Introductory Materials

Legal Information

Since 1954 the Regional Oral History Office has been interviewing leading participants in or well-placed witnesses to major events in the development of Northern California, the West, and the Nation. Oral history is a method of collecting historical information through tape-recorded interviews between a narrator with firsthand knowledge of historically significant events and a well-informed interviewer, with the goal of preserving substantive additions to the historical record. The tape recording is transcribed, lightly edited for continuity and clarity, and reviewed by the interviewee. The corrected manuscript is indexed, bound with photographs and illustrative materials, and placed in The Bancroft Library at the University of California, Berkeley, and in other research collections for scholarly use. Because it is primary material, oral history is not intended to present the final, verified, or complete narrative of events. It is a spoken account, offered by the interviewee in response to questioning, and as such it is reflective, partisan, deeply involved, and irreplaceable.

All uses of this manuscript are covered by a legal agreement between The Regents of the University of California and Kitty Cone dated July 14, 1996. The manuscript is thereby made available for research purposes. All literary rights in the manuscript, including the right to publish, are reserved to The Bancroft Library of the University of California, Berkeley. No part of the manuscript may be quoted for publication without the written permission of the Director of The Bancroft Library of the University of California, Berkeley.

Requests for permission to quote for publication should be addressed to the Regional Oral History Office, 486 Library, University of California, Berkeley 94720, and should include identification of the specific passages to be quoted, anticipated use of the passages, and identification of the user. The legal agreement with Kitty Cone requires that she be notified of the request and allowed thirty days in which to respond.

It is recommended that this oral history be cited as follows:

Kitty Cone, "Political Organizer for Disability Rights, 1970s-1990s, and Strategist for Section 504 Demonstrations, 1977," an oral history conducted in 1996-1998 by David Landes, Regional Oral History Office, The Bancroft Library, University of California, Berkeley, 2000.

Cataloging Information

CONE, Kitty (b. 1944)
Disability rights activist

Political Organizer for Disability Rights, 1970s-1990s, and Strategist for Section 504 Demonstrations, 1977, 2000, xxi, 335 pp.

Family background in Champaign, IL; education in the South, Japan, and Washington, D.C.; muscular dystrophy diagnosis, health care, family support; University of Illinois, 1962-1967: Rehabilitation Center, civil rights activism, Students for a Democratic Society; political organizing for Socialist Workers Party, 1967-1974, in Chicago, Atlanta, Washington, D.C., Berkeley; political organizing for Center for Independent Living, including issues of curb ramps, attendant care, access to transportation (BART, AC Transit, SF Muni), architectural access; lesbian life in the United States and Mexico; HEW's 504 regulations: importance, sit-in to guarantee signature, implementation, 1977-1979; adoption of and raising of son, Jorge; working for disability civil rights at World Institute on Disability, CIL, Disability Rights Education and Defense Fund (DREDF); reflections on feminism, racism, paternalism, medical insurance; reflections on Mary Lou Breslin, Judy Heumann, Ed Roberts, Hale Zukas, Brad Seligman; passage of American with Disabilities Act (ADA), 1990; comments on substance abuse, environmental and mental disabilities, HIV-AIDS.

Interviewed 1996-1998 by David Landes for the Disability Rights Independent Living Movement Oral History Series. The Regional Oral History Office, The Bancroft Library, University of California, Berkeley.

Acknowledgments

The Disability Rights and Independent Living Movement Oral History Series was funded primarily by a three-year field-initiated research grant awarded in 1996 by the National Institute on Disability and Rehabilitation Research (NIDRR), an agency of the United States Department of Education, Office of Special Education and Rehabilitative Services. Any of the views expressed in the oral history interviews or accompanying materials are not endorsed by the sponsoring agency.

Special thanks are due to other donors to this project over the years: the Prytanean Society; Raymond Lifchez, Judith Stronach, and Dr. Henry Bruyn; and June A. Cheit, whose generous donation in memory of her sister, Rev. Barbara Andrews, allowed the Regional Oral History Office to develop the grant project.

Series Introduction--The Disability Rights and Independent Living Movement

by Simi Linton

When I was asked to write the introduction to the Bancroft Library's oral histories on the disability rights movement in Berkeley, it reminded me of the summer of 1975, when I left New York City and headed out to Berkeley, California. For Berkeley was the place to be I told my friends, filled with hippies and free love. I would spend the summer, take courses at the university. I had been disabled just a few years and this was my first trip on my own, away from the tight circle of family and friends I had relied on in those early years.

Someone had told me that Berkeley was a center of disability activism, but I didn't tally that in my list of reasons to go there. I was a naive young woman in my twenties, and still new to disability. I "managed" my disability by keeping its profile low, and its needs in check. I use a wheelchair, and did then, and decided I would need to call the disabled students' office at the university to get help finding an accessible apartment near the campus, but also decided this would be the only concession I would make to my disabled state. I was fine, I told myself and my family, and by that I meant I could go anywhere, I could do everything. Disability would not bog me down and it would not mark me.

While bold on the outside, I harbored the deep fear that I might fail in my ability to keep disability in its place, that it would come crashing in around me and swallow me up. I, therefore, was completely unprepared for the headlong leap I made that summer toward disability, toward the people and the territory that I had shunned. I never imagined that I would move toward disability with interest and gusto. It didn't happen all at once in that brief summer, but I call that time in Berkeley my coming out.

I had arrived in a place where disability seemed more ordinary than it was where I had come from, where accommodations were apparent, where the curbcuts on every corner made it possible for me to go to the supermarket, to the bookstore and up to campus without having to stop someone at each corner, explain to them how to tilt my wheelchair back, take it down the curb, and lift it back up on the other side. Although Berkeley may not have had significantly more disabled people than other places, it seemed to. Maybe it was because I was out on the streets more than I was in New York. I saw people acting out the daily routines of life--going to the supermarket, school or their jobs--using wheelchairs or crutches, brandishing white canes, using sign language and all of the other indicators of membership.

And life started to become easier and more flavorful, not by avoiding disability but by living with it in a different way. The lure of the other disabled people I saw was great, and I learned that it was those people, most I never got to meet, who were responsible for the curb cuts, accessible bathrooms, the independent living center where I went for help, and the disabled students office that had found an apartment for me. I had never seen any place where disabled people were in charge and it thrilled me and made me optimistic about my life in a way that no other experience could.

I learned back then that it was not some benevolent church group that carved out those curb cuts, or a member of the town council trying to get votes who mandated accessible facilities, they were due to the deliberate actions and painstaking labor of members of the disability community who fought for the changes that were made. Their work set the stage for the ongoing struggle for rights and liberties that has engaged a nation of activists. Today, while discrimination remains a constant in disabled people's lives, the right to an accessible environment, to housing, employment, and transportation is governed by laws that are increasingly exerting influence on those who discriminate. Further, the idea of integration, in education, in public accommodations and in transportation, pervades the informed discourse on disability rights and is supported, again, by legislation that mandates desegregating society.

The Bancroft Library's Regional Oral History Office project, "The Disability Rights and Independent Living Movement: The Formative Years in Berkeley, California, 1960s-1980s," exposes the brick and mortar of these victories. Present in the narratives are major players and significant events, as well as the vital auxiliary figures and contributing influences that form the connective tissue of the Berkeley portion of these movements. The histories also reveal the dilemmas and roadblocks that halted progress and interfered with the integrated and equitable society that the framers of this political agenda envisioned.

It is a critical time to look closely at the progress that has occurred, and to study the impairments and deficits that remain in our not yet fully integrated and equitable society. Researchers, activists and those who write policy need, of course, to examine the present moment, and evaluate the necessary steps to take to move forward. Yet, just as important, is an examination of what led us here. How are present problems connected to past struggles? How do ideas that we act on today, relate to those formulated in past eras?

The oral history project provides detailed answers to those research questions. The material they have assembled will be of value to researchers, artists of all kinds, activists and policy makers. This endeavor is made possible now by opportunities afforded by the present moment that were not readily available before. The early activities and ideas have had the opportunity to grow and take root. There has been time to evaluate their impact and to see the shifts in ideas, policy, and human interactions spurred by what at first glance might seem to be a random set of activities undertaken in reaction to specific concrete problems.

In addition, there have been a number of developments over the last three decades that have created both the need and the impetus for this work. I've grouped these into four sections that outline some of the cultural, scholarly and political activity that informs this work.

The Social Construction of Disability and the Significance of Community

What I witnessed in the summer of 1975 when I came to Berkeley from New York was that disability could mean something different just by moving to a new location. I wouldn't learn the term "social construction" for another fifteen years, but I did learn through direct experience that disability is not fixed. I also learned that the disability community is a powerful and meaningful entity.

Fundamental to the Regional Oral History Office project is an understanding of the social construction of disability. The efforts begun in the sixties by the people interviewed here to reframe disability as a social designation and to conceptualize obstacles to employment, education and integrated living as a civil rights issue, rather than an individual problem of impairments and deficits, made it possible to understand disability that way. Further, an essential prerequisite for the progress of the disability rights movement was the organization of the disability community, a coalition formed by the discovery of each other and the recognition of our common social status. Although medical and educational institutions continue to categorize and divide people by impairment status, the formation and the formulation of the "disability community" has had a major impact in the social/political arena.

For all my early learning, and my ongoing study of disability, it is in reading these histories that I have begun to understand how profound and original the ideas are that drove the early activists. The voices that are heard here demonstrate the purposefulness of the activists and their comprehensive vision of an equitable society. If this research platform were to reveal nothing else, it would be invaluable as a means to contradict the stereotypes of disabled people, and of the disability rights movement as merely riding the coattails and mimicking the agendas of the civil rights and feminist movements.

Yet, not only does this collection of histories serve as an exemplar of social construction and the significance of community, it demonstrates the unique nature of the construction of disability and illustrates the struggle to define and assert rights as a minority group in the face of powerful efforts to confine disability within the province of medical discourse.

The Value of First-Person Narratives

A second domain that informs this project is the increased attention to the active voice of previously marginalized peoples. First person narratives, long discredited in academic circles, are now accepted by a wide variety of scholars and public historians as not only valid, but necessary research tools. ROHO's intent to bring disabled people's perspective to the forefront is consistent with that approach, and the nuanced and detailed data they obtained demonstrates again the value of the methodology. Disability has traditionally been studied as the effect of war or violence, the failures of medicine, or other causes. In these narratives, we see that what brought disability to the individual becomes much less important than what the presence of disability causes to happen. Significantly, the narrators show the ways that disability sets in motion certain social and institutional responses. As these histories reveal, a disabled person's presence in a school, a restaurant, a job interview, a social gathering, or other venue often caused events to unfold in particular ways.

While scholars outside of disability studies have rarely paid attention to disability narratives, this project provides compelling documentation of the place of disability within the larger social arena, and also demonstrates the ways that disability plays a role in shaping an historic moment. I believe that the rich insights of the narrators and their ability to reveal the complex consequences of disability oppression will engage scholars within disability studies as well as those outside the field. For instance, researchers might want to look at what the histories reveal about the parallels between the place of women in other early civil rights struggles and in the disability rights movement. They may want to examine disabled people's perspective on their exclusion from other social justice platforms or consider the obstacles that the disability community itself may have erected to coalition building with other disenfranchised groups.

Complex Representations of Disability and the Social Milieu

The oral histories provide detailed descriptions of the lives of the narrators and others in their circles. These materials will be useful not only to researchers and activists but to writers and artists interested in portraying the lives of the people interviewed, or developing fictional representations using these figures as stimuli. For instance, writers can turn to these histories for background information for projects that dramatize events of the sixties. The projects might relate specifically to the events or the people described in the oral histories, or the research might be aimed at gaining more accurate information about secondary characters or events. A writer might want to learn more about what the Cowell Residence really looked like, who lived there, what were the attendants like, some of whom were conscientious objectors doing alternative service during the Vietnam War, or what kinds of wheelchairs and other adaptive equipment were people using then. These histories are about disabled people and the genesis of the disability rights movement, but they are also histories of the period and will be useful in providing more accurate representations of both.

While mainstream cultural products continue to depict disabled people and disabled characters in inaccurate and narrow ways, a growing number of writers, artists, actors, and performance artists who are disabled or are insiders in the disability community are providing more realistic, interesting and complex representations of disability to a wider audience than the arts ever have before. Although the numbers are still small and the venues marginal, I expect that over the next decade, as increasing numbers of disabled people gain access to higher education and training in the arts, their ranks will grow and as they do, this material will continue to grow in value.

A Resource for Disability Studies Scholars

Finally, this project will be an invaluable resource to the growing ranks of disability studies scholars. Disability studies began to take shape as an organized area of inquiry in the early 1980s. Prior to that time, although there were isolated pockets of transformative scholarship in some liberal arts fields, the study of disability was housed almost exclusively in the specialized applied fields (rehabilitation, special education, health, et cetera). Disability studies came along and provided a place to organize and circumscribe a knowledge base that explains the social and political nature of the ascribed category, disability. The field has grown enormously, particularly since the early 1990s, as has the Society for Disability Studies, the organization that supports the work of scholars and activists interested in the development of new approaches that can be used to understand disability as a social, political and cultural phenomenon.

Certain ideas pervade disability studies. For instance, a number of authors have examined such ideas as autonomy and independence. The perspectives employed in a disability studies analysis of such phenomena afford a complex look at these hitherto rarely examined ideas. Scholars interested in the theoretical implications of these ideas will benefit from examining the ROHO histories. They will learn, as I did in a recent reading, how the early activists discovered that the surest route to gaining independence was to have access to attendant care. These young people, many just out of institutions, or living away from home for the first time in their lives, were creating a new type of community, one in which it was clearly understood that support and services are necessary for individual autonomous functioning. They recognized the irony that what is typically thought of as "total dependence" was instead the ticket to the greatest freedom and autonomy they'd ever known. Rather than wait for the nurse or orderly in their institution to "decide" if it was time to get out of bed, have a shower, eat dinner or watch television, with personal attendants available and under their direction they could make these decisions on their own. Rather than wait at home for their mother or other relative or friend to bring them food or take them somewhere, they could lobby the university for a lift-equipped van that would be at their disposal and provide them with access to the kinds of leisure activities non-disabled students take for granted. They learned by setting up their own wheelchair repair services, and hiring qualified mechanics, they could keep their manual chairs, and the power wheelchairs that they also had lobbied for, in working order.

Through their lived experience they had the occasion to formulate a new way of thinking about such accepted ideas as what constitutes independence; what is freedom, equity, and integration; the ways that physical dependence and psychological independence are two separate and potentially unrelated variables. Disability studies, while dominated by theoretical formulations, social science research methodology, and modes of analysis employed in various areas of the humanities, will benefit enormously from the concrete examples given here of the abstract principles our work depends on.

The value of this project will ultimately be revealed as future research, creative endeavors, and policy initiatives are developed that have utilized this primary source material. Over the decades to come, researchers in all areas of inquiry will find within these documents numerous variables to be tested, relationships among people, events, and trends to be examined, cultural phenomena to be studied and dramatized, and ideas to be woven into theory or literature. The most exciting research opportunity that this work affords is the examination of the beliefs and behaviors of people whose demands for equity and justice upped the ante in the fight for an inclusive society.

The Regional Oral History Office staff are to be commended for their vision. They have brought us a vital piece of history, one that would be lost and forgotten if it were not for them. They have captured in these individual histories, a history. And a legacy.

Hunter College
New York, New York

SERIES HISTORY--The Disability Rights and Independent Living Movement Oral History Project

by Ann Lage and Susan O'Hara

Historical Framework

The movement by persons with disabilities for legally defined civil rights and control over their own lives took on its present framework in the 1960s and 1970s. Virtually simultaneously in several cities nationwide, small groups of people with significant disabilities joined together to change the rules of living with a disability. No longer content with limited life opportunities, nor willing to be defined solely as medical patients, they shared the willingness to challenge authority, discard received wisdom, and effect societal change that was the hallmark of the era. Not surprisingly, the disability movement paralleled other movements for equity and civil rights by and for racial minorities, women, and gay people. From our vantage at the close of the century, it is apparent that these movements, taken together, have changed the social, cultural, and legal landscape of the nation.

Berkeley, California, was one of the key cities where models for independent living were developed. A small group of young people, all wheelchair users, had one by one enrolled at the University of California in the 1960s. In an era prior to accessible dormitories or private housing, they were given living quarters in the campus's Cowell Hospital. In the midst of the campus maelstrom of free speech, civil rights, and anti-war protests, they experimented with radical changes in their daily lives, articulated a new philosophy of independence, and raised their experience to a political cause on campus and in the community.

By 1972, these students had created new institutions, run by and for people with disabilities, which soon attracted national attention. The first two of these organizations, the Physically Disabled Students' Program on the campus and the Center for Independent Living in the community, drew several hundred people with disabilities to Berkeley from across the United States. This early migration became the nucleus and the strength of the community that, for many, came to symbolize the independent living movement.

Political action kept pace with the developing awareness and institutional growth. In the early seventies, the Berkeley group successfully lobbied the city of Berkeley for curb cuts and the state legislature for attendant care funding. In 1977, scores of persons with disabilities sat in for twenty-six days at the offices of the federal Department of Health, Education, and Welfare in San Francisco, as part of a nationwide protest that eventually forced implementation of Section 504 of the Rehabilitation Act of 1973, often called the Bill of Rights for Americans with Disabilities. Many participants trace their awareness of disability as a civil rights issue and their sense of membership in a disability community to the 1977 sit-in.

By the 1980s, a number of other important organizations had evolved from the Berkeley experience: the Disability Rights Education and Defense Fund (DREDF), the World Institute on Disability (WID), Computer Training Program (later, the Computer Technologies Program [CTP]), the Bay Area Outreach Recreation Program (BORP), and others. All of these organizations shared the original philosophy of the Berkeley movement. Their example and their leaders have had national and even international impact on the quality of life and civil rights of persons with disabilities.

Genesis of the Project

The idea for a project to document these historic events germinated for nearly fifteen years before funding was secured to make possible the current effort. In 1982, Susan O'Hara, then director of the Disabled Students' Residence Program at the University of California, Berkeley, contacted Willa Baum, director of the Regional Oral History Office (ROHO) of The Bancroft Library, suggesting that the genesis of the Berkeley movement be recorded in oral histories with participants in the campus's Cowell Hospital Residence Program. Mrs. Baum and Ms. O'Hara began planning, enlarged the project scope, gathered faculty support, and initiated the search for funding. Their efforts produced three grant applications, the final one in cooperation with Professor Raymond Lifchez of the UC College of Environmental Design, to the National Endowment for the Humanities, none successful.

ROHO then secured funding from the Prytanean Society, a Berkeley campus women's service group, to produce oral histories with Arleigh Williams and Betty Neely, both campus administrators who oversaw the establishment of the early disabled students' programs. Herb Wiseman, a former staff member of the disabled students' program, conducted these two interviews in 1984-1985. Later, the California State Archives State Government Oral History Project funded an oral history with Edward Roberts, the first student in the Cowell program and later the director of the California State Department of Rehabilitation. This initial support proved essential; all three individuals were to die before the current project was funded.

By 1995, as the historical importance of the events in Berkeley and beyond grew increasingly evident, the fragility of the historical record became ever more apparent. The archival records of key institutions that grew out of the movement and shaped nationwide events were not collected and preserved in a publicly accessible library. The personal papers of key leaders of the movement were scattered in basements and attics. Moreover, the urgency of preserving the memories of participants through oral history interviews was underscored by the death of five pioneer disabled activists in the previous several years.

When Susan O'Hara and Mary Lou Breslin outlined the scope of the problem to The Bancroft Library, the then-curator of Bancroft Collections, Bonnie Hardwick, joined Willa Baum in support of the idea of developing a comprehensive disability collection at Bancroft. Baum, Hardwick, and Ann Lage, associate director of ROHO, worked with leaders of the disability community to design a plan for an archival collection at The Bancroft Library, to include both in-depth oral history interviews and written and photographic records of major organizations and activists. The Disabled Persons' Independence Movement collection was envisioned as "a primary historical resource of national significance, a research platform for future scholars, for persons with disabilities, and for public education." The National Institute on Disability and Rehabilitation Research generously funded the three-year project in 1996.

Project Staff and Advisors

The collaborative nature of the project--among the disability community, academic advisors, oral historians, and archivists--has strengthened it in every respect. The advisory board included three Berkeley professors: Frederick Collignon of the Department of City and Regional Planning, who has worked on disability issues since 1970; Raymond Lifchez, Department of Architecture, who has conducted research on environmental design for independent living since 1972; and William K. Muir, Department of Political Science, who has chaired campus committees on disability issues, and is a scholar of U.S. and state government and public policy. Paul Longmore, professor of history from San Francisco State University and a specialist in disability history, was crucial in defining themes and topics to explore in oral history interviews. Mary Lou Breslin, president and co-founder of the Disability Rights Education and Defense Fund, represented the perspective of the organizations to be documented as well as her personal experiences as an activist for disability rights.

Knowing that oral history is most often successfully carried out by persons who combine a compelling personal interest in the project with an ability to bring a historical perspective to their task, the Regional Oral History Office turned to the Bay Area disability community itself to staff the project's team of interviewers. Susan O'Hara became the historical consultant for the project and conducted a number of interviews as well as informing all of the project activities. All of the project interviewers had personal experience with disability. A majority had significant disabilities, several had participated in or observed the historical events to be documented and knew many of the key players and organizations. Interviewers included Sharon Bonney, former director of the Disabled Students' Program at UC Berkeley and former assistant director of the World Institute on Disability; Mary Lou Breslin, who crossed over from the advisory board; Kathy Cowan, librarian for a public-interest nonprofit organization; Denise Sherer Jacobson, a writer and educator on disability issues; David Landes, a college instructor of economics and coordinator of student affairs for the Computer Technologies Program.

Joining the team to interview narrators in Washington, D.C., was Jonathan Young, a Ph.D. candidate in American history at the University of North Carolina who had conducted oral histories on the history of the Americans with Disabilities Act. When Mr. Young resigned to accept a White House appointment, Susan Brown, long familiar with disability issues and other civil rights/social movements, became the project's Washington connection. Ann Lage coordinated the interviewing team for the Regional Oral History Office, and the office's regular staff, coordinated by production manager Shannon Page, provided transcription and other clerical support.

Bancroft Library project personnel included Bonnie Hardwick, curator; Lauren Lassleben, supervising archivist; and Jane Bassett, the project archivist whose job it was to contact the disability organizations, project interviewees, and other activists and survey their records to identify historical material. Once records and personal papers were donated to the Library--more than 300 linear feet before the project's conclusion--it was Jane and her student assistant, Amber Smock, who preserved, organized, and made the papers accessible to scholars with detailed finding aids. The archival and oral history projects, though separately administered, were in close cooperation, with the interviewing team providing contacts with the disability community and leads on papers to collect and the archivists assisting interviewers in their research in the growing collection of written records.

Interviewees and Themes

An overarching question for the project was to explore and document how this social movement developed in time, place, and context: how the movement in Berkeley was built, how it became effective, how individual life experiences contributed to and were changed by the movement. Lines of inquiry included identity issues and personal life experiences; social/economic/political backgrounds of individual activists; the roles of women and minorities in the movement; development of leadership; institution building and management; development of a disability community group identity; media, mythology, public image and the political process; impact of technology; the range of efforts to influence disability law and policy and to embed disability rights into the canon of civil rights.

Interviewees (narrators) were selected for one of several reasons: the individual was a founder or recognized leader of one of the key institutions, made a unique contribution to the movement, was a particularly keen observer and articulate reporter, or was a sustainer of the movement who provided a unique perspective. We attempted to choose narrators who had a range of disabilities and to interview nondisabled persons who contributed significantly to events or institutions.

Interviewees fell primarily into two categories: either they were involved in the residence program of Cowell Hospital on the Berkeley campus in the sixties or they participated in the building of early organizations in the 1970s.

Group One--UC Berkeley's Cowell Hospital Residence Program

A wing on the third floor of Cowell Hospital was the site of the first housing for students with significant disabilities on the Berkeley campus. This cluster became a breeding ground for the Berkeley phase of the independent living movement. About a dozen students--mostly men, mostly white, mainly in their twenties, with more and more autonomy within their grasp--spent several years in this benign but nonetheless isolated hospital residence, in the middle of a campus exploding with student protest movements. Six of these students were interviewed, including Ed Roberts, who narrated several hours of 1960s memories before he died with the oral history still in process. The former students all refer to their sense of community, intense camaraderie, the thrill of independence, an atmosphere of an-idea-a-minute, and the politics of their involvement.

Also included in this first group were certain early university and State Department of Rehabilitation officials--the hospital director, the nurse/coordinator, counselors--who might be called traditional gatekeepers but nonetheless allowed the unorthodox residence program to happen and in some cases encouraged it.

The majority of the narrators in the first group stayed involved in disability-related activities for many more years. Their recorded histories include these later activities, overlapping with the events documented in the second group of narrators.

Group Two--Builders of the Movement

The second group of interviewees are primarily founders and leaders who participated in the expansive phase which began in 1970 with the start of the Physically Disabled Students' Program (PDSP) at the university, followed by the founding of the Center for Independent Living (CIL) in 1972. These interviews reveal the grassroots politics, high energy, occasional chaos, unstinting belief in "the cause", seat-of-the-pants management, funding sources and crises, successes and failures of individuals and organizations. In the next few years a whole constellation of organizations evolved to sustain the independent living movement, including DREDF, CTP, KIDS, BORP, WID, Center for Accessible Technology (CAT), and Through the Looking Glass. This group of interviewees provide insight into the politics, leadership, and organization-building of both their own organizations and CIL.

Many key interviewees in this group are still in leadership positions and have had national and international impact on disability policy development. Also included in this second group are persons who were not in the top ranks of leadership but who were keen observers of the scene, could augment the basic history, and offer further points of view.

Oral History Process

All of the project interviewers received formal and informal training in archival oral history procedures and met monthly as a group to plan and evaluate interviews and review progress. Interviewers prepared a preliminary outline before each interview session, based on background research in relevant papers, consultation with the interviewee's colleagues, and mutual planning with the interviewee. In-depth tape-recorded interview session were from one to two hours in length; interviewees required from one to fifteen sessions to complete their oral histories, depending on the length and complexity of their involvement in the movement.

Tapes were transcribed verbatim and lightly edited for accuracy of transcription and clarity. During their review of the transcripts, interviewees were asked to clarify unclear passages and give additional information when needed. The final stage added subject headings, a table of contents, and an index. Shorter transcripts were bound with related interviews into volumes; longer transcripts constitute individual memoirs.

More than forty oral histories are included in this first phase of the Disabled Persons' Independent Movement project. Volumes can be read in the Bancroft Library and at the University of California, Los Angeles, Department of Special Collections. They are made available to other libraries and to individuals for cost of printing and binding. Many of the oral histories are accompanied by a videotaped interview session to document visual elements of the interview and the setting in which the interviewee lives or works. Video and audiotapes are available at The Bancroft Library. If funding for a second phase of the project is secured, many of the oral history transcripts as well as a representative collection of documents and photographs will be available on the Internet as part of the Online Archive of California.

The Regional Oral History Office was established in 1954 to augment through tape-recorded memoirs the Library's materials on the history of California and the West. The office is under the direction of Willa K. Baum, Division Head, and the administrative direction of Charles B. Faulhaber, James D. Hart Director of The Bancroft Library, University of California, Berkeley. The catalogues of the Regional Oral History Office and many oral histories on line can be accessed at http://library.berkeley.edu/BANC/ROHO/.

Special thanks are due to donors to this effort over the years: the Prytanean Society; Raymond Lifchez and Judith Stronach; and June A. Cheit, whose generous donation in memory of her sister, Rev. Barbara Andrews, allowed the Regional Oral History Office to develop the grant project. The Bancroft Library's three-year Disabled Persons' Independence Movement Project, of which these oral histories are a part, was funded by a field-initiated research grant from the National Institute on Disability and Rehabilitation Research (NIDRR), U.S. Department of Education.

Regional Oral History Office
The Bancroft Library
University of California, Berkeley

Disability Rights and Independent Living Movement Oral History Series
The Formative Years in Berkeley, California

August 2000

Single-interview volumes

Single-interview volumes
• Mary Lou Breslin
•     Cofounder and Director of the Disability Rights Education and Defense Fund, Movement Strategist, 2000.
• Joel Bryan
•     Founder and Director of Disabled Students' Services, UC Riverside and UC Davis, 2000.
• Kitty Cone
•     Political Organizer for Disability Rights, 1970s-1990s, and Strategist for Section 504 Demonstrations, 1977, 2000.
• Charles Grimes,
•     Attendant in the Cowell Residence Program, Wheelchair Technologist, and Participant/Observer of Berkeley's Disability Community, 1967-1990s, 2000.
• Deborah Kaplan
•     National Policy Advocate and Leader of Disability Rights Organizations, 1976-1990s, 2000.
• Johnnie Lacy
•     Director, Community Resources for Independent Living: An African-American Woman's Perspective on the Independent Living Movement in the Bay Area, 1960s-1980s, 2000.
• Joan Leon
•     Administrator at Berkeley's Center for Independent Living and the California Department of Rehabilitation, Cofounder of the World Institute on Disability, 2000.
• Susan O'Hara
•     Director of the UC Berkeley Disabled Students' Program, 1988-1992, Coordinator of the Residence Program, 1975-1988, and Community Historian, 2000.
• Corbett O'Toole
•     Advocate for Disabled Women's Rights and Health Issues, 2000.
• Zona Roberts
•     Counselor for UC Berkeley's Physically Disabled Students' Program and the Center for Independent Living, Mother of Ed Roberts. Appended: Jean Wirth, Counselor at the College of San Mateo and Early Mentor to Ed Roberts, 2000.
• Susan Sygall
•     Cofounder and Director of Berkeley Outreach Recreation Program and Mobility International USA, Advocate for Women's Issues, 2000.

In Process, single-interview volumes:

In Process, single-interview volumes:
• Judy Heumann
•     Deputy director of the Center for Independent Living, cofounder of the World Institute on Disability, assistant secretary of the U.S. Department of Education. (in process)
• Arlene Mayerson
•     Directing attorney, Disability Rights Education and Defense Fund. (in process)
• Pat Wright
•     Director, Governmental Affairs Office of the Disability Rights Education and Defense Fund, strategist for the Americans with Disabilities Act. (in process)

Multi-interview volumes:

Multi-interview volumes:
• UNIVERSITY OF CALIFORNIA'S COWELL HOSPITAL RESIDENCE PROGRAM FOR PHYSICALLY DISABLED STUDENTS, 1962-1975: CATALYST FOR BERKELEY'S INDEPENDENT LIVING MOVEMENT, 2000.
  • Edward V. Roberts
  •     The UC Berkeley Years: First Student Resident at Cowell Hospital, 1962.
  • James Donald
  •     Student Resident at Cowell, 1967-1968, Attorney and Deputy Director of the California Department of Rehabilitation, 1975-1982.
  • Cathrine Caulfield
  •     First Woman Student in the Cowell Program, 1968.
  • Herbert R. Willsmore
  •     Student Resident at Cowell, 1969-1970,Business Enterprises Manager at the Center For Independent Living,1975-1977.
  • Billy Charles Barner
  •     First African American Student in the Cowell Program, 1969-1973, Administrator in Disability Programs in Los Angeles.
  • John "Jack" Rowan
  •     Student Resident at Cowell, 1971-1973, and Chair of CIL's Board of Directors, 1976-1982.
  • Peter Trier
  •     Student at Berkeley: Transition from the Cowell Hospital Program to the Residence Halls, 1975.
• UC BERKELEY'S COWELL HOSPITAL RESIDENCE PROGRAM: KEY ADMINISTRATORS AND CALIFORNIA DEPARTMENT OF REHABILITATION COUNSELORS, 2000.
  • Henry Bruyn
  •     Director, Student Health Services, 1959-1972.
  • Edna Brean
  •     Nurse Coordinator, Cowell Residence Program, 1969-1975.
  • Lucile Withington
  •     Department of Rehabilitation Counselor, Cowell Residence Program, 1969-1971.
  • Karen Topp Goodwyn
  •     Department of Rehabilitation Counselor in Berkeley, 1972-1983.
  • Gerald Belchick
  •     Department of Rehabilitation Counselor, Liaison to the Cowell Program, 1970s.
  • John Velton
  •     Department of Rehabilitation Administrator: Providing Oversight for the Residence Program, Fostering Career Placement and Computer Training, 1970s-1980s.
• BUILDERS AND SUSTAINERS OF THE INDEPENDENT LIVING MOVEMENT IN BERKELEY
  • VOLUME I, 2000.
    • Herbert Leibowitz
    •     Research and Training Specialist for the Rehabilitation Services Administration, 1971-1990.
    • Mary Lester
    •     Grant Writer for the Early Center for Independent Living in Berkeley, 1974-1981.
    • Bette McMuldren
    •     Assistant to Judy Heumann and Grant Writer at the Center for Independent Living, 1975-1980.
    • Kenneth Stein
    •     Public Information Coordinator for the Center for Independent Living and Participant/Observer of the Disability Movement.
  • VOLUME II, 2000.
    • Carol Fewell Billings
    •     Attendant and Observer in the Early Days of the Physically Disabled Students' Program and the Center for Independent Living, 1969-1977.
    • Michael Fuss
    •     Attendant for Cowell Residents, Assistant Director of the Physically Disabled Students' Program, 1966-1972.
    • Linda Perotti
    •     An Employee Perspective on the Early Days of the Cowell Residence Program, Physically Disabled Students' Program, and the Center for Independent Living.
  • VOLUME III, 2000.
    • Eric Dibner
    •     Advocate and Specialist in Architectural Accessibility.
    • Hale Zukas
    •     National Disability Activist: Architectural and Transit Accessibility, Personal Assistance Services.
  • VOLUME IV, 2000.
    • Janet Brown
    •     Student Member of the National Federation of the Blind and First Newsletter Editor for the Center for Independent Living, 1972-1976.
    • Phil Chavez
    •     Peer Counselor at the Center for Independent Living, 1970s-1990s.
    • Frederick C. Collignon
    •     UC Professor of City and Regional Planning: Policy Research and Funding Advocacy.
    • Hal Kirshbaum
    •     Director of Peer Counseling at the Center for Independent Living.
    • Michael Pachovas
    •     Berkeley Political Activist, Founder of the Disabled Prisoners' Program.
    • Raymond "Ray" Uzeta
    •     Independent Living Centers in Berkeley, San Francisco, and San Diego: Perspective on Disability in Minority Communities.
  • VOLUME V, 2000.
    • Jacquelyn Brand
    •     Parent Advocate for Independent Living, Founder of the Disabled Children's Computer Group and the Alliance for Technology Access.
    • Doreen Pam Steneberg
    •     Parent Advocate for Educational Rights for Children with Disabilities.
• MAINSTREAM MAGAZINE: CHRONICLING NATIONAL DISABILITY POLITICS, 2000.
  • Cynthia Jones
  •     Mainstream Magazine Editor and Publisher.
  • William Stothers
  •     Journalist and Managing Editor of Mainstream Magazine.
• UNIVERSITY ADMINISTRATORS RECALL ORIGIN OF THE PHYSICALLY DISABLED STUDENTS' RESIDENCE PROGRAM, 1987.
  • Arleigh Williams
  •     Recollections of the Dean of Students.
  • Betty H. Neely
  •     Recollections of the Director of Student Activities and Programs.

In Process, multi-interview volumes

In Process, multi-interview volumes
• Neil Jacobson
•     Cofounder of the Computer Training Project and Cochair of the President's Committee on Employment of People with Disabilities.
• Scott Luebking
•     Cofounder of the Computer Training Project, Specialist in Accessible Technology.
• Maureen Fitzgerald
•     Early Deaf Services Programs at the Center for Independent Living.
• Anita Baldwin
•     Deputy Director and Head of Blind Services for the Center for Independent Living, Early 1980s
• Joanne Jauregui
•     Activist in the Deaf Community: Deaf Services at Center for Independent Living.
• Raymond Lifchez
•     Professor of Architecture, UC Berkeley.

Videotaped Interviews

Videotaped Interviews
• Mary Lou Breslin, Kitty Cone, Charles Grimes and Larry Biscamp, Neil Jacobson, Joanne Jauregui, Deborah Kaplan, Johnnie Lacy, Joan Leon, Susan O'Hara, Zona Roberts, Ken Stein, Herb Willsmore, Hale Zukas.

Interview History--Kitty Cone

by David Landes

Kitty [Curtis] Cone was invited to be interviewed as part of the Disability Rights and Independent Living Movement Oral History Series because of the seminal role she has played in the disability rights movement since her arrival in the Bay Area in 1972. She was a key political strategist and organizer in several important actions including the 1977 one-month 504 sit-in at the HEW offices in the federal building in San Francisco. She had developed her political organizing skills as an activist during the 1960s and early 1970s in the civil rights, antiwar, and women's movement and as an organizer for the Socialist Workers' Party.

Ms. Cone's interview is also important because her story traces the development of her understanding of disability rights as a civil rights issue. Diagnosed with muscular dystrophy at age five, Ms. Cone's story reflects the social attitudes toward disability in the 1950s and 1960s and her own adjustment to and internalization of those attitudes. She attended the University of Illinois as part of a program sponsored by the Rehabilitation Center at the university. She immediately became a political leader in the civil rights and antiwar movements but like many other disabled people did not make the connections to the discrimination and attitudinal barriers faced by people with disabilities. Her response to discovering the independent living movement upon her arrival in Berkeley in 1972 reflects the enormous impact that the fledging movement had on her own thinking; in turn she immediately put her considerable political skills to work for the movement with significant impact. Her reflections on the difference in attitudes between the Rehab Center's program at the University of Illinois and the independent living philosophy she encountered in the Bay Area provide valuable insight into the ability of the latter to empower people with disabilities.

Ms. Cone was not only intimately involved in almost every important organizing event and demonstration in the Bay Area for rights for disabled people since 1972, she has also worked in several vital organizations: the Center for Independent Living, the Disability Law Resource Center (DLRC), Disability Rights Education and Defense Fund (DREDF), and the World Institute on Disability (WID). She was able to provide valuable observations and insights into the history, functioning, and leaders of these organizations. She also discussed her views of the relationship of the disability rights and independent living movements to the broader movements for peace and economic and social justice in the United States.

The interviews were conducted in twelve sessions from July 1996 through April 1998 in Ms. Cone's home in Albany, California. Interviews were difficult to schedule regularly due to conflicting work schedules of interviewee and interviewer. Both Ms. Cone and the interviewer faced important family issues during this period which slowed the process. Interviews were occasionally interrupted by the telephone, Ms. Cone's teenage son, Jorge, or her attendants who live with her. Ms. Cone spoke without notes and displayed excellent recall of feelings, attitudes and events. The interviews were transcribed in the Regional Oral History Office, and lightly edited by the interviewer and then by project editor Sharon Bonney. They were then reviewed by Ms. Cone who made some corrections and light editing. A one-hour video interview was also conducted on March 9, 1998; it is available at the Bancroft Library as part of its Disabled Persons' Independence Movement collection.

The Regional Oral History Office was established in 1954 to augment through tape-recorded memoirs the Library's materials on the history of California and the West. Copies of all interviews are available for research use in The Bancroft Library and in the UCLA Department of Special Collections. The office is under the direction of Willa K. Baum, Division Head, and the administrative direction of Charles B. Faulhaber, James D. Hart Director of The Bancroft Library, University of California, Berkeley.

January 1999

Regional Oral History Office
The Bancroft Library
University of California, Berkeley

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I Childhood and High School Years, 1944-1962

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## This symbol indicates that a tape or a segment of a tape has begun or ended. A guide to the tapes follows the transcript.

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Family Background

Landes

This is David Landes interviewing Kitty Cone on August 10, 1996, in Albany, California.

Kitty, tell me about your parents. What was their background, how did they meet, and circumstances of your birth?

Cone

Okay. My mother [Molly Mattis Cone] came from an upper-class family in Champaign, Illinois. Her father was a banker, and his father was a banker. She had a typical upper-class upbringing. She went to Emma Willard boarding school, and she went to Sarah Lawrence. She loved sports, won a lot of golf trophies, and traveled a whole lot.

They say that my father's father [Hutchinson Ingham Cone] was the youngest admiral in the history of the U.S. Navy other than John Paul Jones. He was evidently quite a charming character. He came up from north Florida, which is like Georgia in terms of how people think. He beat his way into the Naval Academy. And then he had this meteoric rise in the navy. His wife--my grandmother--Patty Selden, came from this old, old Virginia family which actually owned slaves on a plantation on the James River. I think that my grandmother really inculcated this Southern attitude in my father [Hutchinson Ingham Cone, Jr.] that the Yankees were bad people [laughs]. I think that my grandfather was much more cosmopolitan.

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Anyway, my grandmother--my father's mother--died when he was quite young, and he was sent off to boarding school. He was sent to St. Alban's, then to Lawrenceville, and then he went on--

Landes

Where were those schools? In the south, I take it?

Cone

No. St. Alban's is a boarding school in Washington. I think it's where Al Gore's son goes, [chuckles], or Al Gore went, actually. It's a very upper-class, Episcopal boarding school. And then he ran away. I think he missed his mother and was unhappy. Then they sent him to Lawrenceville, which is in New Jersey. Then he went to Princeton. He wanted to be an ornithologist, but I guess his father said to him, "You can't support a family being an ornithologist," you know, being a bird watcher. So he went to Harvard Law School and got a degree from Harvard Law School. I don't think he really enjoyed the law; I don't think my father was ever really happy in his professions.

The way my mother and father met is rather incestuous. My grandfather--my father's father--was living in Washington, and my mother's father's sister was in Washington being the hostess for her uncle, who was a United States Senator, because he was not married. In that context, Aunt Jule on my mother's side met my grandfather [laughs] on my father's side, and they got married--late. She was around fifty, and he was a little older. And that's how my mother and father met; they were step-first-cousins.

My father went into the army because World War II had broken out. They got married, and in their wedding photos he's in his uniform, and immediately they went off to live in Oklahoma where he was stationed.

Landes

Were they married in Washington?

Cone

No, they got married in Champaign in my grandfather's house, and then they went off to Oklahoma. To Fort Sill, maybe? My mother got pregnant, and my father was shipped overseas. He was in the campaign in Africa, and then went up through Italy. Anyway, my mother went back to live with my grandfather--

Landes

In Champaign?

Cone

In Champaign. And so did her sister, who was married and pregnant also, and whose husband was in the navy. So my aunt and my mother lived with my grandfather for a number of years. My uncle came back sooner, but my father didn't come back from the war until I was about two and a half. So I never met my father until I was about two and a half.

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Landes

When were you born?

Cone

I was born April 7, 1944.

Landes

So he came back from the war in approximately 1947?

Cone

I think so, yes. When he came back, he collected my mother and moved to Jacksonville, Florida, where he entered a law firm.

Landes

Because of his old connections from that area?

Cone

Yes. There were a lot of Cones in Florida. Anyway, it was a very good law firm. According to my mother--who knows what the true story is--my father discovered that the law firm, over the next few years, was carrying out double billing or doing some bilking of the federal government. It was some New Deal type of program. He just really objected to that; he was an honorable person in that respect. I guess he just got disgusted, and he went to the partners, and they said, "If you want to work here, you keep your mouth shut."

So he left, and then he didn't know what to do. So he went back into the army, which completely flipped my mother out [laughs]. She had not thought of herself as being an army wife.

Landes

When did he go back into the army?

Cone

As soon as he went back into the army, he was sent to Fort Gordon, in Augusta, Georgia, and I was in second grade. So that would have been, what, '51? I guess I was six.

Landes

So when you were six you moved to Augusta, Georgia. Do you remember Jacksonville?

Cone

Yes. Actually, we lived in a suburb called Ponte Vedra Beach. It was really a nice place to live. There was a lagoon in the backyard that had all kinds of fish, and you could go boating in it. It did one time have an alligator, and it had water moccasins and that sort of stuff. And it was right on the Atlantic Ocean--across the street, on the front.

Disability Diagnosed: Family Response

Cone

That's where they figured out that something was problematic about my walking. When I was in first grade, the teacher told my mother that she thought something was wrong because I was walking on my

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toes all the time. My family just sort of--everybody on my mother's side, if there's something going on with the body they just ignore it [laughs].

Landes

Like pain?

Cone

Well, they don't make a big deal out of stuff. And something has to be really serious before they deal with it. [tape interruption]

So anyway, my mother took me to the doctor.

Landes

When you were about five or six?

Cone

I was six, I guess. I think the first diagnosis was cerebral palsy. They said just leave it alone. This was when we were in Jacksonville. They didn't do much about it. Should I continue with this theme, or should I talk more about what went on in Jacksonville? Because that's where Helen and I ran into our racist stuff.

Landes

I would like to continue with discovering that you were disabled, and how you felt about it in particular.

Cone

I didn't even take it in at all.

Landes

Do you have a memory of going to the doctor?

Cone

Oh, yes. One of the things about the military is that they guarantee you free medical coverage for the rest of your life. What they don't tell you is that it is frequently not good. It's like an HMO only it's worse [laughs].

Landes

So you were going to a VA [Veterans Administration] hospital, or an army hospital?

Cone

Actual army hospitals. And so I went to the army hospital in Augusta, at Fort Gordon. I have a memory of being stripped naked in front of a whole classroom of medical personnel. I just hated it; it was utterly humiliating. They didn't know what my disability was, and the doctors discussed my unusual symptoms, turning me around in different directions as though I were a specimen.

The first thing that they did was put casts on my legs because my heel cords were getting tight. That's one of the first things that happens with muscular dystrophy. In order to stretch them out, they pulled the heel cords down, set my feet in casts, and I had to wear walking casts all the time. If it was raining

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my mother would have to carry me because I couldn't get my casts in the water. Then at another point they put braces on my legs to do the same thing: to stretch my legs out.

Landes

Could you play with these casts on your feet?

Cone

I had a really good friend whom I played with. So yes, I did play.

Landes

Did you feel different? Did you think of yourself as being different? I take it that you were unable to run as fast as the other kids or play exactly in the same way.

Cone

I knew I was different but I don't think I felt bad about it. Possibly I did feel bad about it, but as I said, the ethic in my mother's family is if something is considered painful, sad, something that would make you angry, you don't get into those emotions. You think positively, you ignore it. You ignore things that are "bad." So there was always just this sort of casual acceptance of the disability as it was progressing.

My mother was a wonderful mother. She was very, very kind, and she did her best to make sure I had all kinds of experiences and opportunities, but she never said, "Oh, this is too bad," or "I hope this doesn't hurt," or anything like that.

Landes

In no way was your mother expressing any feeling that this is a horrible thing that had happened to you and that you were a burden to the family?

Cone

Oh, never. No, no, never. When I finally did get diagnosed with muscular dystrophy, it was about the time of my fifteenth birthday. I was living with my aunt [Elsie Mattis Springer] in Washington, D.C., and my family was in Japan. My father kept all the letters that my aunt wrote to him over the years, or any correspondence regarding me. My aunt, I think, had exactly the same kind of philosophy that my mother had, which they got from their mother. She's writing to my parents to tell them that I've got this diagnosis. At the time, what the doctors told her, and the materials that she read, she thought--and my aunt is a very smart woman, and she wouldn't write a letter like this if she hadn't really thoroughly investigated and believed it--that I would probably die, say, before I was twenty or something like that.

So she has to write a letter to my parents to tell them that I've got this diagnosis and how to deal with it. I mean, can you imagine my poor parents? My mother--I can't even imagine what she must have thought. My aunt writes this letter and she says, "I'm

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so sorry that I have to write you this letter and tell you this," and she lays it out. And then she says, "This is how I propose that we deal with it. We don't tell Kit what it is because it might upset her; if she knows what the diagnosis is, she's going to hear something about it on television." Probably the muscular dystrophy telethon [chuckles]. "And that's just going to depress her. We just tell her that the doctors are doing their best, and she seems to be getting a little weaker, and we treat her exactly the same. She'll still have the same personality and the same sense of humor and the same intellect. Do not write her about this at all."

I don't know what my mother wrote back, and then my aunt wrote again saying, "Well, the doctor says we should tell her what it is, so I have talked to her, and she seemed a little subdued for a day or two, and then now she's back to normal and trying to figure out how to get out of doing her algebra homework." [laughs]

Landes

So it sounds like it didn't have a huge impact, at least immediately.

Cone

Right. But that sort of sums up the way my family dealt with raising us. We didn't get a whole lot of bad information.

Landes

Do you have any memory of your father's attitudes regarding the disability?

Cone

Not at all. Not until I was much, much older, and we were involved in various feuds around money and where I was going to live, and I think he tried to use it to control me--which he was unsuccessful at.

Landes

We'll come back to this issue of your disability as we go on through your childhood--ways in which it changes, the way that your perception changes.

Let's go back to Jacksonville. You were talking about living in Jacksonville.

Cone

Well, I had friends in Jacksonville, but the person I really wanted to hang out with was this young woman, Helen [Newsome], who was our live-in maid. My mother had been raised with a nanny, and she had had a nanny for me when I was first born. In fact, she took off and went on a trip when I was a baby. So Helen was really the person who got my lunch, and my mother would send me off to do things with Helen. I would sit in the backyard, and Helen and I would fish for catfish. I was very, very attached to Helen.

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I remember one time my mother sent us--I think Helen must have been driving--to see Elsie, the Borden cow. Another time she sent us to the county fair or something, and they wouldn't let Helen get on the ride because she was black. They told Helen that she could put me on the ride, and I said, "Why can't you go on the ride? I'm not going on this ride if they won't let you go on the ride." Evidently I said something to them about "Why won't you let Helen on the ride?" I think that because my mother was from the north, she was just completely ignorant about segregation. I mean, she wasn't ignorant about segregation, but she just didn't absorb it. And then when we lived in Augusta, and we would be traveling, Helen would travel with us.

Landes

The incident that you were just referring to in Jacksonville was when you were maybe five or six years old?

Cone

Yes, five or six.

Landes

And then Helen moved with you to Augusta?

Cone

Yes. She lived with us in Augusta, and then later when we moved to Maryland, she lived with us in Maryland. Then she got married, and her mother Mamie [Newsome] came and lived with us.

Landes

That's Helen's mother?

Cone

Yes.

Landes

So Helen's mother lived with you also?

Cone

Yes.

I was always pretty smart and never had any academic problems in school. I seemed to make friends easily, which was good because I moved around a huge amount--both because of the military and because of the disability.

Landes

But Helen was moving with you all this time?

Cone

Yes, until we went to Japan.

Reacting to Racism and Segregation in the South

Landes

Were there any other experiences that you remember or incidents that you remember with Helen regarding the issue of segregation and racism?

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Cone

Well, every time we would travel in the car to visit up north, we would go to a gas station and Helen wouldn't be able to go to the bathroom. Or we would go to a motel or a hotel, and we would have to take Helen across town to her own motel. I remember it made a big impact on me, and it made my mother really mad. My mother and father obviously did not agree. She came from the north and he from the south, and so that was the topic of some discussion--I'm sure not in front of Helen.

Landes

What's your memory of your own perception of that? Were you angry? Did you not understand it? Were you confused?

Cone

Yes, at that age I didn't understand it, and I was mad when they wouldn't let Helen--I don't even remember what ride it was, actually.

Landes

So I take it that Helen lived with you until you were maybe ten? Until you went to Japan?

Cone

Well, Helen got married. Actually, I forgot--we moved to Illinois, and Helen's mother, Mamie, was living with us until I was about ten. Then we moved back to Illinois for one year because my father had gone to Japan, and my mother went back to live in Champaign. At that point, my mother and my brother, George [Hutchinson Cone], and I were just living alone in an apartment. We spent a lot of time at my grandfather's house. They probably didn't have the money to sustain two households at that point.

Landes

Any other memories of your perception of racism or your relationship with Helen?

Cone

Just that Helen was absolutely my best friend for several years. My family tells me that I preferred to be with Helen than to play with other kids. Helen was not that old; I think she couldn't have been more than eighteen. She would want to go and talk to the other maids and people along the street, and I would want to tag along, and I'm sure that she didn't appreciate that. They probably wanted to talk about who was dating whom, and here I was in the midst of it all. But I just glued myself to Helen's side; that's who I wanted to be with rather than play with other kids. You know, she took me to the beach, she took me fishing. My mother told her to take me places.

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― 9 ―

Living in Japan, and Surgeries, 1955-1957

Landes

So you moved around in your early years, and then you moved to Tokyo. When was that?

Cone

The summer before I went into seventh grade. My father was stationed there for four years, but I only lived there for two years because they sent me back to go to school in Washington when I was in ninth grade.

Landes

Do you have any memories that you would like to share about living in Tokyo? Were you able to get around easily in Tokyo? Any exciting experiences there?

Cone

Some definite issues on the disability front. By this time I was beginning to limp, and--

Landes

You walked with a limp?

Cone

Yes. And my mother took me to the Tokyo army hospital, and they decided at that point that I had had polio, that that was the diagnosis, not cerebral palsy. They proposed doing some surgeries on me. I had had surgeries at Walter Reed [army hospital near Bethesda, Maryland] when I was about eight. I had four surgeries on my heel cords and the backs of my knees, and I was in the hospital for about a month, I think. At that point, the surgeries made me worse because I think the worst thing you can do for a kid with muscular dystrophy is lay him up in bed for a long time; they lose muscles, and they don't ever get them back. So I was limping by the time the surgeries were over instead of just walking on my toes.

I was sort of feeble, but I remember that I participated in everything. I played kickball; that's the sport I remember. I just couldn't run as fast as the other kids. I think I hated P.E. [physical education], to tell you the truth. I hated it because everybody in the family and the school, I guess, thought that I should participate, but I was no good at it.

So when we got to Japan, they were going to do this surgery on my hip. I was laid up for a long time, and I was really significantly weaker after it was over. That was when I was eleven. Then they wanted to do the other hip, and I begged my mother--I said, "Please, it's making me worse. Please, please." But a parent generally will listen to a doctor; I mean, who's going to think that their kid knows more than their doctor--which it turned out I did, instinctively, know that they were messing me up.

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They went ahead and did the other hip, and I was weaker. And I remember saying to them, "You have to let me walk afterwards. I have to be able to walk because lying around is not good for me." I really, actually knew that at that young an age. When I came out of the anaesthesia I was saying, "They promised me I would be able to get up and walk around," and I'm lying in the bed, and I'm screaming, "Let me out of this bed!" [laughs] You know how you're out of it when you're coming out of anaesthesia.

And then my mother--this is typical of my mother--arranged for my grandfather to send a bunch of money; so my mother took my best friend (Gia, Virginia Hemphill) and her mother and me to this fabulous luxury hotel called the Fujiya Hotel, which had many swimming pools and restaurants and gave us carte blanche. Gia and I would go all over and have hamburgers and Coca-Colas and--a beautiful place at the foot of Mount Fuji. My mother arranged for me to have a massage every day. That was what I did after I had my surgery.

Friends, Sports, Dances, Dates, and Disability: Preteen and Teen Years

Cone

Actually, when I was in Japan I was going to junior high school, and I had a crush on my best friend's brother. I was really a smart girl, and I was of average appearance; I mean, I wasn't really beautiful, and I wasn't ugly--what guys consider ugly or pretty. And I had lots of friends, and everybody liked me, but I remember it was down to the wire before I got asked to go to the prom in seventh grade. The guy who asked me was somebody who was considered sort of a racy guy, and I really didn't want to go with him, and my mom says, "You know, if you want to go to this dance, you're going to have to say yes."

So I went, and I remember not dancing very much, which was fine with me, because it was very hard for me to balance. So dances were kind of a tortuous experience for me.

Then in eighth grade nobody asked me to the dance. I went with Gia's brother--I don't remember if I asked him or our families arranged it.

##

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Landes

Kitty, you were talking about going to school in Japan and the prom. What kind of school was it?

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Cone

It was an American school on the military base. Again, I wasn't cut any slack. I can remember having to do jumping jacks and all kinds of calisthenics [laughs] in between these two different surgeries. It was a good school; academically, I think it was quite a good school.

I had a lot of friends. I organized a group of girls into something; we called ourselves "The Eight-Ball Eights," and we made ourselves little patches and made up a language only we could understand.

One of the things that I did was to take riding lessons at the Imperial Stables. I was always a horse nut. You know how girls are frequently in love with horses when they're young? Well, I was like that, and I knew how to ride Western saddle. In fact, this is a good illustration of my mother's way of dealing with things. Did I tell you this story about getting bucked off the horse?

Landes

No.

Cone

When we were living in Illinois, my grandfather owned this farm outside of town, and there was this ornery horse named Beauty that nobody rode. I don't even know what she was for. I really wanted to ride. I knew how to ride Western saddle from having gone to camp. My mother took me out to the farm so that I could ride Beauty. They got a truck--Beauty didn't even have a saddle; nobody rode her--I mean, this is so ludicrous. My mom says, "Just climb on her from the truck," because I didn't have the strength to mount bareback. So I get on, and I grab the mane, and Beauty takes off like a bat out of hell, bucking me into a barbed wire fence. I had my good coat on, and my coat was ripped, my mouth was cut and bleeding slightly, and I chipped my tooth. And my mom is, "Get back on the horse. She's going to know you're afraid." I said, "I'm not getting back on the horse, I am afraid! Look at my coat!" And I did not get back on the horse.

So when I was riding at this stable in Tokyo--this is how I marked my steps in my disability progression. Riding Western saddle is a lot easier if you don't have very good leg muscles than English saddle because you have to post if you're riding English saddle.

Landes

Describe Western style.

Cone

It's got a big saddle with a horn, and you just sit. And English saddle, you have to post; you stand up in the stirrups and go up and down.

---

Landes

And the saddle is much, much smaller?

Cone

Much smaller, and it requires more leg strength. I had this horse that was just stone crazy named Akizuki. First of all, I couldn't guide the horse very well because I didn't have enough strength in my legs. But secondly, they always gave me the worst horses because I was the disabled person. Isn't that a weird story? You would think they would have given me the best horse.

Landes

The worst horses were the ones that acted up the most?

Cone

Yes. Later they put Akizuki down because he was crazy. He used to run with me sideways into the wall and smash my leg [laughs]. So I gave up riding at that point.

The other thing that I gave up was ice skating. I think the biggest present I ever got--kids are raised differently today, but my family did not believe in showering gifts on you--was in sixth grade. I ice-skated a whole lot, and my mother gave me a pair of ice skates for Christmas. I just loved skating. I think when I got to Japan--it must have been the winter of seventh grade--they found an ice skating rink, and I went out on the rink, and I couldn't skate. I just fell down and fell down; I didn't have the strength. I remember being extremely demoralized by that because these were my two things: horseback riding and ice skating, and I lost them.

Landes

You lost both the horseback riding and the ice skating. How did you react to that? When you say "demoralized," what do you remember about that?

Cone

I never knew--oh, the other thing was [laughs] my mom had me involved in all these traditional things. When I was in fifth grade I remember I was taking tap dancing lessons and ballet lessons. And of course I was not as good as the other girls. I can remember doing my stretch exercises and all the positions and all of that sort of stuff. I also took piano lessons. So they were raising me in the typical fashion. I just was not very good at it because--I could stand on my toes; that I could do [laughs], but I couldn't do much of the other stuff. I think that I just never consciously processed it, because for years after that when I would watch ice skating or ballet on television, I would cry. And I never knew why I was crying. I assume it was because it was a big loss to me. Certainly I would have given it up at some point. They weren't raising me to be an ice skater or a ballet dancer, but it was a loss, and you didn't acknowledge loss like that in my family. You just moved on.

---

Landes

It was a subconscious feeling, this loss of your ability to do the tap dancing and to do the ice skating and other sports?

Cone

Yes, I think so.

Landes

Do you remember if you were consciously feeling that, or were you angry?

Cone

I remember being very sad and surprised about the ice skating. And humiliated.

Landes

Did other children say anything about it?

Cone

No, no one ever really made fun of me. I always had really nice, supportive friends.

Landes

By this age, did you have any perception that people were treating you differently?

Cone

No.

Landes

Or not letting you do things because you were disabled?

Cone

When I lived in Champaign, my best friend was this girl who came from another upper-class family in Champaign [laughs], and--

Landes

What age is this now? You lived in Champaign a couple of times.

Cone

Oh, this is when I was ten, when I was in sixth grade. We lived there during the first year my father was in Japan.

We walked home from school for lunch, and I lived quite a good distance from the school. So every morning I would go pick up my best friend, and we would walk to school together, and every single day at lunchtime her family had these very formal sit-down lunches with servants serving them lunch and everything. Every single day, her mother, Helen Bess, would say to me, "Kitty, why don't you have lunch with us today? Let me call your mother and see if that would be okay." It was this routine: I knew I was going to have lunch there, Helen Bess knew I was going to have lunch there, and my mother knew I was going to have lunch there. But they went through this routine, and I think Helen Bess thought it wasn't good for me to be walking all that distance. And I think she was right; I mean, she was much more realistic about it than my mother, for me to go tottering all the way home and then all the way back [laughs]. I wasn't tottering, but I was too weak to walk that far.

---

Clearly, people--adults at least--were treating me differently. And my grandfather sent me a bunch of money for my mother to take me on vacation. Actually, I must have been kind of manipulative. When I was in Japan, and after I had had the second surgery, and my mother had taken me on this vacation with my grandfather's money, there was some money left. I wrote my grandfather a letter and said, "Dear Papa, I am working very hard to earn money to buy a tape recorder because when I go to parties everyone else is dancing, and because I'm weak, I'm not very good at dancing. So I thought if I could get a tape recorder--" now we're talking a great big old reel-to-reel; I think this thing must have cost a hundred dollars, which was a lot of money in those days, "I could have something to do at the parties. There is a little bit of money left from what you sent, about fifty dollars. If I can earn the fifty dollars--" which was an enormous amount of money, and my mother made me work; they were very, you know, Scottish or something [laughs], "then I could get the tape recorder. Mother says I have to write to you and ask you."

Evidently Papa said yes, because I got this reel-to-reel, and it was my treasure for about five years.

Landes

And what did you do with it?

Cone

Well, I taped music on it. I would tape an Elvis song and a Pat Boone song and stuff and then take it around to parties, because you could carry it. It was a great big thing and I--

Landes

So you would tape it at home from the radio, and then you would take it to parties?

Cone

Or off of record players. I think that the only time I ever felt consciously--and the only thing where I think I was really getting unequal treatment was in the whole area of dating. All of my friends were dating, and I did not get asked out. I was going to a girls' boarding school a lot, and I was also moving a lot, but I never had a boyfriend until I was--I think I didn't get kissed until the summer that I graduated from high school.

Landes

Did you feel rejected or angry about this? Was it something that you were conscious of?

Cone

No. I just created this fantasy life for myself. Here's a mean story: my best friend's brother, I had a complete and utter crush on him from the time we lived in Japan. He was in eighth grade, I was in seventh grade, and I adored him. He was very, very smart. Then his family moved to Virginia, and I saw them; I would go visit them, and she would come visit me. Then he went to the Air Force Academy when I was a senior in high school. That summer,

---

the freshman class at the Air Force Academy traveled around, and they came to Fort Benning, Georgia. So Bobby wrote me a letter and said, "Why don't you get a bunch of girls and come up here, and you can be my date," blah blah blah. So I got this fancy dress and all these girls, and we went up there. Bobby just completely ignored me; I don't think he realized how far my disability had progressed. His best friend, whom I had met before and who went with him to the Air Force Academy, was really nice to me, and Bobby would ditch me. We went on a picnic one day, and he went all the way down to the river and left me sitting up all by myself. So his best friend would just come and sit with me. He said something to me like, "He's really an ass, isn't he?" [laughs] I remember feeling shot down and wanting to escape and go home.

Landes

Did you connect it to the disability?

Cone

Yes, at that point I did.

Landes

And by this time we're talking about late in high school?

Cone

I think that was after I had graduated from high school.

Landes

Let's go back a little earlier. You're moving around, you talked about living in Tokyo. Is there anything else about Tokyo that you would like to say? Did you have Japanese friends?

Cone

Yes, the family did. My father's roommate at Princeton had been a Japanese prince, and they were both very interested in ornithology. So when my father got there, he linked up with Dr. Yamashina. My father was the only Westerner that they ever took into the Royal Birdwatching Society [laughs] who got to visit the Imperial Cemetery and birdwatch. He had to walk backwards so he wouldn't disturb the spirits by his presence.

So he met all of these interesting Japanese people through being in this ornithological society. They would invite us to fancy dinners, and they would invite my mother to tea, and my mother understood not a word [laughs]. And they didn't understand her. We would get invited off to these wonderful places. These people had gorgeous homes with what we would call hot tubs up in the mountains. I have a lot of photographs of us off on trips with our Japanese friends. We had a number of particularly close Japanese friends, but I was in seventh and eighth grade, and what I really wanted to do was to be hanging out with my friends, and they would always go Saturday and spend Saturday night and come back late Sunday. I wanted to go to church on the base because that was the big social thing for teenagers, to go to Sunday school. I was very into the church, and I wanted to light the

---

candles at church and that sort of stuff. So my family often left me with my best friend's family so I didn't have to go on these trips.

Landes

So did you have friends among Japanese children?

Cone

I had a couple of friends who were daughters of my father's friends, but there was not really a whole lot of interaction between the military kids and the society outside.

Landes

Were you divorced from Japanese society and Japanese children?

Cone

Except that I wasn't--

Landes

With the exception of these visits and your father's continued interest in ornithology.

Cone

Yes. And one of my--what was her name? Yukiko, I think. One of my father's friends had a daughter about my age whom I used to invite over to spend the night and stuff.

Landes

She spoke English?

Cone

Yes. And ultimately my father, after my mother died, ended up marrying a Japanese woman who was the younger sister of one of his friends.

Landes

Anything else you would like to say about your time in Japan? It was approximately two years?

Cone

Yes. It was just a very--I remember once getting caught in a "Yankee, go home!" type of situation where--I'm not sure it was directed at us. Yes, actually, it was. Somehow or other I ended up joining the Rainbow Girls, and there was this--I don't even quite know what the Rainbow Girls are, but a bunch of us were coming out of a meeting. We got picked up in a car that must have had military license plates on it. There was something going on, like a demonstration or something, and people were yelling, "Yankee, go home! Yankee, go home!" I remember that. I don't know if it was directed at us, though.

Boarding School in Washington, D.C.

Landes

So after leaving Japan, you went to ninth grade in Washington? Was that a public school or a boarding school?

---

Cone

I kind of jumped around. It's a boarding school, and I boarded part of the time. I was going to live with my aunt--my mother's sister--and uncle, and my uncle was a congressman [William Lee Springer]. He was back in Illinois running for Congress. Then once he was reelected, he came back to Chevy Chase, Maryland. So as soon as the election was over--I think my cousins were also boarding. Two of my cousins were boarding at the same school.

Landes

Your uncle won the election?

Cone

Yes, he always won [laughs]. Then I went back to live with them in Chevy Chase and continued going to that school. I found correspondence between my aunt and my father. This school had a lot of stairs--

Landes

What was the name of the school?

Cone

Holton Arms. It was the same type of school--it's where Al Gore's girls go [laughs]. It's where Jackie Kennedy went at one point; I mean, it's one of those types of schools. Very, very good education. But I could not continue to go there because--they were big brownstone type of buildings--and by this time they had the diagnosis when I was in ninth grade. So my mother started applying to different boarding schools for me in the area. They applied to Sidwell Friends, which accepted me; they probably wouldn't have kicked me out. They were theoretically a Quaker school.

Landes

This is ninth grade--1958 or 1959?

Cone

Yes. And so I really, really liked that school. And then my family came back. They wanted to send me to school in Washington, but they couldn't kind of get it together. So they decided that I would go back and live with the family. My father was sent to Richmond, Kentucky.

Reacting Strongly to Racism in Kentucky High School

Landes

So you went to Richmond, Kentucky, for the tenth grade?

Cone

For the tenth grade. And I went to Model High School, Eastern Kentucky State College's university high school. It was a private school. I wanted to continue taking Latin; I had started Latin at Holton Arms, and I think the Latin at Model was on the second floor, and so I was taking Latin through a correspondence course

---

or something. And my mother arranged for them to move classes around.

I hated Richmond, Kentucky. First of all, I had come from this really, really academically good prep school. And in this school everybody cheated; I mean, it was really weird. In my class everybody cheated, and I was horrified. I can remember talking to my father about it, "What shall I do? They're going to get mad at me if I don't give them the answers." And he said, "Well, you know you're going to have to make that decision yourself, but you know you're not just cheating yourself but you're cheating them, too." But the big thing was--this was where I started getting into the fights about racism. And boy, I was unrelenting in bringing the issue up.

Landes

This is 1959 and 1960.

Cone

Yes. And of course Holton Arms was not integrated, but the army school had been integrated. At Holton Arms, the whole issue of race just wasn't shoved in your face. But in Kentucky, people were racist. They used racist terms.

Landes

They were openly racist?

Cone

Yes.

Landes

The students, the teachers, pretty much everybody?

Cone

Well, I remember interacting with my social group, and I had a lot of friends, and I can remember talking about it all the time. I didn't know how to fight it. I remember one time being at a slumber party, and there was some old movie on TV where they accused the black butler of having murdered someone, and in the end it turned out that it was the rich, white man or something. So I proceeded to give a lecture to everybody: "You see, this is what happens. This is why Negroes get blamed for things that they don't do." I really didn't know how to fight it, but I just knew that it was completely wrong.

The next slumber party, we were playing this game called truth and consequences or something, where everybody tells one person what they think about them. I was like the second person, and everybody said, "We really like you a lot, Kitty, you're really fun and a great girl, but could you just shut up about the niggers? You just talk about the niggers all the time." I remember just thinking, "I want to get out of here. I hate this game." [laughs]

---

Being in Richmond, Kentucky, was a real pivotal thing for me and just being horrified by the racism. That was my strongest memory of Richmond.

Landes

Do you have any understanding now of why you reacted so strongly on the issue of race or racism there?

Cone

My father came from this southern Democratic Party tradition and was a Southerner. His mother was from the southern aristocracy, and it never would have occurred to him to use a racist term--not until later when he began to bait me. My mother was from the north where things were integrated, and I was just totally shocked. And I don't know why--I had also been living in Japan, where people are of a different race.

Landes

So you're in the tenth grade in Richmond, Kentucky. Had you been aware, to your memory, of the Montgomery bus boycott or the integration of the Little Rock schools in 1956? Do you really have any memories of that?

Cone

Oh, absolutely. I remember thinking that it was just horrible what the racists were doing. I was very clearly on one side.

Landes

You spoke of your father baiting you. Was this later or do you remember?

Cone

No, it was later. It was like when I--

Landes

During this period, what was your memory of your father's attitude on Montgomery or Little Rock, for example?

Cone

I don't remember him saying anything about it.

Landes

But you had a very strong opinion in favor of the integration of the schools in Little Rock and a strong reaction against the way in which white people were treating black people?

Cone

Oh, yes. I had been to integrated schools, and I guess I kind of didn't realize--I mean, I had not been around southern racism since I was a little child, and I just was horrified.

Landes

Did you have any relationships with black children, black students, in Richmond?

Cone

No. It was a completely, completely segregated society. I wouldn't have even known--I tried to integrate myself in Augusta in twelfth grade and got absolutely nowhere [laughs], if you can do something like that.

---

Landes

So the other students your age liked you, but they were sick and tired of you talking about the issue of race?

Cone

Yes.

Landes

How did they treat the issue of disability? Do you have any memory of that?

Cone

They just accommodated to it. Again, I was always really popular, I was very smart--I was always sort of the smartest kid in the class, that kind of thing. Again, other people were dating, and I wasn't dating. I got into the debate club; I was the only girl in the debate club, I think. I was popular with girls, I was popular with boys; I was probably the only person who really was not dating. My best friend wasn't really dating, either.

Landes

Did you perceive it as being due to your disability?

Cone

Yes, but I didn't dwell on it. I don't think I was very hormonal or something [chuckles]; it didn't seem to be upsetting me.

Landes

Any other incidents or anything else about Richmond, Kentucky, that you remember being important to you?

Cone

My family had decided to send me to boarding school in Gulfport, in Biloxi, Mississippi. It was like Gulfport Prep School and Junior College. They were going to send me there because of the weather, and we had gone down there, and we had looked at it and stuff. Then my best friend was going to go in her junior year to this prep school in Washington where one of my first cousins had gone--Mount Vernon Seminary. It's another one of those really upper-class boarding schools. My family decided to send me to Mount Vernon, because that way I could go with Jessie.

Landes

Was that where you went in the eleventh grade?

Cone

Yes. It's where I got kicked out of.

D.C. Boarding School: Limitations, Expulsion and Humiliation

##

Landes

Kitty, you were just beginning to talk about leaving Richmond, Kentucky, and going to a boarding school in Washington, D.C., about 1960, when you were entering the eleventh grade. What boarding school was that?

---

Cone

Mount Vernon Seminary on Foxhole Road in Washington. It was another one of these upper-class girls' boarding schools, and I think they might have taken me because my older cousin had gone there years before. In any case, when I first got there the headmistress called me in and said, "Now you have great academic talent, so I'm putting you with this girl, Penny, who is very social. Maybe she'll be able to help you socially, and you can help her academically." It was kind of a setup. In any case, Penny and I got along okay. The disability was always a big factor.

Landes

In what way was it a factor?

Cone

They imposed these limits on me. They said I had to take a bath in the housemother's bathroom, but I couldn't get out of her bathtub. So I used to take my bath--we were in a suite: two girls on either side of a bathroom, so four girls sharing a bathroom. So I would take my bath in there, and Penny would watch out and make sure I was okay getting out of the bathtub. And I was fine. So that was considered disobedience.

Landes

But why did they insist on your taking your bath elsewhere?

Cone

I think their big issue was liability.

Landes

They wanted an adult around when you were bathing?

Cone

Yes.

Landes

And how did that make you feel?

Cone

The only thing I remember was that the first time I tried to get out of her bathtub--it was a great big bathtub, and I couldn't get out. So I just stopped taking my baths there immediately and took them in my own suite, which worked fine.

And then they told me not to walk down to the hockey field. You know, field hockey is the big thing. I'm trying to remember--there was some election for like--they had the yellow team and the white team. I think I was on the yellow team; I don't remember.

Landes

So you actually played field hockey?

Cone

Oh, no, no, no, no. I was walking with a cane at this point. But there was some big election that was going to take place down at the hockey field, and so I walked down to the hockey field--

Landes

So they had the whole school divided into the yellow and the white teams?

---

Cone

Yes, and there was some really big deal that was taking place, and I thought I was going to win it. I can't remember how it came out, but I went down there, and the headmistress found out about it--I mean, it's just ridiculous to prohibit a kid from participating. Nothing happened; I wasn't falling or anything like that.

Anyway, one day she calls me into her office and she said, "I am very disappointed in you, Kitty." I was just so shocked; I was this kid who always played by the rules, and academically I was doing very well at the school. I was getting really good grades. She said, "You haven't been taking your baths where you are supposed to, and you went down to the hockey field." I remember leaving there feeling that it was utterly, utterly unfair. She said something about, "And Penny's not doing real well at school," or something [laughs]. I remember that everything that she accused me of was so utterly unfair. I went back to the art room where I was painting and I was just mortified.

Landes

Did you connect this unfairness with disability?

Cone

Well, it had to do with the disability, but--

Landes

But did you connect it with disability? Or did you feel like you were being discriminated against?

Cone

No. I just felt like she was being completely unreasonable, even though the issue was the disability.

Then at Christmastime my aunt was going to drive me to Illinois because all the family from Washington was going to drive to Illinois. So my aunt sat me down, and she said, "I'm really sorry, but Mrs. Lloyd feels that you cannot go back to board at Mount Vernon, that things just haven't been working out very well there. I want you to know that if you want to continue to be a day student at the school that you can live with me." I didn't even hear anything about the disability. I just knew that Mrs. Lloyd thought that I had broken the rules that she had set down for me, and I just felt utterly, utterly humiliated. I just didn't want anything more to do with them.

Landes

Because they were being so unfair.

Cone

Well, they had kicked me out of the boarding school. They said I could continue to be a day student, but she had such a bad attitude towards me. Can you imagine getting on an eleventh grader and just really coming down hard because they walked down to the hockey field?

---

I just felt like my tail was between my legs, and I really was furious. I was just furious. I remember we had just gotten--you know how you take the PSAT [Preliminary Scholastic Aptitude Test]? In your junior year you take the SAT [Scholastic Aptitude Test], but these are like a trial run or something. This is a bunch of smart girls, you know, who have had the best education. I had the highest PSAT in the junior class, and they still kicked me out [laughs]. I felt really humiliated, and like I had disgraced my family. I didn't think of it as discrimination; I just thought that they were being unfair to me, that because I had broken the rules--and I felt that the rules were arbitrary, but I did not see it as discrimination, and I didn't even get it that it was because of the disability. My aunt says to me that she is sure that she must have said something to me about it. How would she have explained it?

Landes

What was your aunt's reaction?

Cone

Her reaction was to try to work it out for me and to keep me in that school. And I just didn't want to; I wanted to go back to my family.

Landes

And what was your parents' reaction?

Cone

Well, I don't know. See, my family does not--later, my father said they were just outraged at what the school had done. My cousin, Patty, who was the one who had gone there, and who I think was probably a contributor and stuff, she was furious. So my family was mad at the school. Again, it was one of those things where you just pass over.

Landes

They didn't make an issue of it?

Cone

No. Later, when I was doing technical assistance at DREDF [Disability Rights and Education Defense Fund], I got a call from the parent of a girl who had a learning disability and who was not being accommodated at Mount Vernon, and I was like, "Great, I'll take this one!" [laughs]

Landes

DREDF is the Disability Rights Education and Defense Fund, where you worked?

Cone

Yes.

Landes

So you went back to live with your family after you got booted out of Mount Vernon School?

Cone

Yes.

---

Joining Family in Augusta, Georgia: Observing Civil Rights Movement

Landes

And where was that?

Cone

They were back in Augusta, Georgia. I ended up going from this very academically excellent small school with just girls to an integrated high school that was--there must have been 3,000 students there, I don't know.

Landes

By "integrated" you mean boys and girls?

Cone

Boys and girls. It was definitely not integrated black and white; it's Augusta, Georgia, in 1961. I hated the school. For the first time, I had to use a wheelchair because the school was so big. They were just afraid I would fall walking around. So they had this wheelchair at the school.

Landes

Did the school buy the wheelchair?

Cone

No, no, no, my parents. Actually, I didn't use the wheelchair. I didn't use the wheelchair until I went to Aquinas. My mother hired a driver to drive me to and from school, and I think I only went to school in the morning. I think they arranged my schedule so I just went in the morning, because I can remember coming home and eating lunch with my mother. So it probably went like from eight-thirty to one or something. Nothing matched up, you know? I was right in the middle of the school year, the whole curriculum changed; I had been reading Virgil and I was switched to Cicero. Also I was very snobbish. I was very contemptuous of the teachers. I had an English teacher who I thought mispronounced words.

I didn't really make friends. I made good friends with the girl across the street who had been my friend before, and I made good friends with this boy who lived next door who was Mexican-American. And another friend on the street. But kids from the actual school--I remember things that just horrified me. I didn't want to be friends with anybody. By this time, the race issue was very, very much on my mind. Augusta, Georgia, is probably one of the most viciously segregated places you could find in those days. It was so bad. I can remember a group of boys talking about how they went to Niggertown on the weekend and shot it up with BB guns. It was just beyond the pale, and I got into fights with everybody, and I provoked fights. I don't think I was popular at all [laughs]. It's like, "Where did this person come from?"

---

By that time, the civil rights movement had begun, and we were watching it on TV at home. My mother thought that it was a good thing; my father thought it was a bad thing. There were a lot of arguments about it. The first real fight that I had with my father about any action that I took, it seems to me it was--okay, I think Mamie Eisenhower came from Augusta, and her brother lived in Augusta, and some completely innocent black people went into his church by accident and were told to leave. I don't remember the details of this; I would like to go find the newspaper articles, actually. So there was this big thing in the paper about these black people going into a white church.

So I wrote a letter to the Augusta Chronicle--which I showed to my father, thinking that he would think it was a good thing--saying that when we're in church--because I was very religious--we are supposed to be thinking about our souls and things of the spirit and not things of the body. So why should we be paying attention to the color of someone else's skin? The story of the Good Samaritan, and God says we're supposed to love everybody--it was a very religiously-oriented letter which the Augusta Chronicle did not print. But it definitely got me in hot water with my father, who thought I should not send the letter.

So then the next year, my father arranged for me to go to this girls' Catholic school--it was boys and girls but the girls were educated separately.

Landes

In Augusta?

Cone

In Augusta. Aquinas. I am now on my fifth high school, and I said to my father--after I hated Richmond Academy so much--"I'm not going to go back to school; I've had it with high school," [laughs] and they were not pleased. Here they have this academically gifted daughter who the only thing she's got going for her is her brains, and she's saying she's not going to go to school. I just thought, I can't face another school.

Well, Aquinas actually was a very nice school. It was nuns and priests, and I was the odd duck as always because I was the only Protestant [laughs]. I was an Episcopalian in this Catholic school. I wanted very much to be a Catholic because everyone else was Catholic, and so I started going to catechism classes, but I just could not believe in the infallibility of the Pope. The Episcopal church is very much like the Catholic church, except for this.

Anyway, I got to know the monsignor of the area as a result of that. I was teaching Sunday school in the Episcopal church at

---

that time, and I wanted to join the NAACP [National Association for the Advancement of Colored People].

Landes

In Augusta?

Cone

Right [laughs]. I'm trying to think if I've got the right year. It might have been--yes, this is the right year. Actually, this happened when I was nineteen because this was after my mother died. I had gone to college, and I had come back. I had been one year to college, and I had come back, and I was teaching Sunday school in the Episcopal church. Because I took a semester off of school.

Landes

This is in 1963 after your mother died?

Cone

Yes. So I decided I wanted to join the NAACP, and I asked the priest at our church how I could join the NAACP or how I could send clothes to civil rights workers. I wanted to do something. He was the only person I knew who thought like I did because he had come from the north. And I was getting into a little bit of trouble because I was teaching race relations in the Sunday school class [laughs]. So Father Waldron told me to call St. Mary's. And I thought he was talking about the Catholic church, so I called up Monsignor Burke from the Catholic church, but he was talking about the black Episcopal church, and I called [laughs] Monsignor Burke, and I said, "Do you remember me, Kitty Cone, from Aquinas? I want to find out about the NAACP." "Why on earth would you want to do that?" I mean, the Catholic church was not progressive at all, I think, on that.

That year at Aquinas, I--

Landes

You were there one year or a year and a half?

Cone

Just one year. I went to the public school, and then I went to this Catholic school.

Landes

So your senior year was at Aquinas?

Cone

I was very conservative except for the race issue. I remember that there was a girl in the class whose dad had been a labor organizer--she had an Irish last name. A very smart girl. She would always speak favorably of unions--I guess we were studying American History--and so I would just attack unions. So the nun decided to organize a debate, and I was a fierce debater, having had experience being on the debate team [laughs]. We each got to pick our debate partner, so I picked the girl that was the most popular [laughs], and the one who was pro-union picked someone who was real smart. We just beat the pants off them. We got quotes

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from popes talking about labor unions being the devil's tool or something--I was touting Section 14b of the Taft-Hartley Act, the Right to Work clause.

I was just really conservative. I entered this American Legion essay contest on what I can do to help fight communism and won for the city for Augusta. Now you have to be really conservative to win in the city of Augusta, Georgia, [laughs] on how to fight communism. And it's very interesting because what I said was what I ultimately turned around and did. I said that the way the Communists work and recruit and spread their ideas is through front organizations that are in favor of peace or are in favor of civil rights or in favor of things that people think are really good, but then the Communists get to you in there. So what you have to do is you have to expose this kind of stuff [laughs], you know, something like that. I wrote away to the FBI and got them to send me information and really worked at it.

That year I won the Betty Crocker Homemaker of the Year Award for my school.

Landes

How did you do that? Was it a project or an essay?

Cone

No, it was a test. I don't know how I won it, because I had never--I guess I took home ec for that year because I had already had enough English classes. I was like completely out of whack in terms of classes. It was like, "If you're sewing and you do X, Y, and Z," you know, it was multiple choice and writing an essay, and "How do you bake a cake" and stuff like that. I'm a terrible cook, and I couldn't sew a stitch if you paid me a million dollars.

One other thing that is sort of an interesting little anecdote is when I was in Richmond, Kentucky, we were asked to write a paper about what we wanted to be when we grew up--when we got out of high school, what were our career plans, and I think most girls wrote that they wanted to get married and have children--so I wrote that I wanted to be a lawyer, and I described all about why I wanted to be a lawyer. And this is a kid who was getting straight A's, and I got a really bad grade on it. The guy said, "Your writing is fine, but you're completely wrong: women can't be lawyers." Now that seems completely unreasonable, but at the time, women were not going to law school, and women were not lawyers. I'm sure there were some women lawyers, but this teacher had never heard of them. It's kind of astonishing if you look back on it.

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II College Years at the University of Illinois

U of I's Rehab Center: "Controlling" Attitude

Cone

I graduated from Aquinas, and then I looked at a number of schools. I looked at Emory University. I really wanted to go to one of the Seven Sisters; I was very oriented to going to Vassar or Wellesley or something, but it just wasn't feasible. I think I went and looked at Sophie Newcomb--you know, the female half of Tulane at the time. They were thinking that I would do better in the South because there was no snow and ice.

Then, lo and behold, the University of Illinois in Champaign has this rehab program. Mary Lou Breslin was telling me that she had to go through some kind of interview process--they really did take the cream of the crop of disabled students from all around the country. I think the U of I basically was it. You could go to Southern Illinois University--there were some accommodations, but the U of I was really the only place you could go in those days.

I don't recall going through an interview. I think probably my uncle pulled some strings, looking back at it [laughs], to get me into the program.

Landes

Your uncle the congressman?

Cone

Right. The school was in his district. Although I'm sure I would have qualified; I had good SATs and grades.

Landes

We were talking about your choosing to go to the University of Illinois, and that that university was the only one with accommodations for severely disabled people. Did you resist going there for that reason, or--

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Cone

Not for that reason. I wanted to go to an Ivy League school. I really wanted to go to a women's college. I had tried a couple of places, and I just realized that I needed to be using a wheelchair although I could still walk. I was falling down a lot, and I needed--my family made the decision for me; I didn't make the decision.

Landes

So your parents, probably with the assistance of your uncle?

Cone

Yes. My aunt and uncle. They probably said, "This is the perfect place for her." The University of Illinois is a good school. They had, I think, between 100 and 200--I'm not sure--students in wheelchairs. That was really the focus. And you had to be physically fit enough to do everything for yourself in order to go there, which I was at the time.

Landes

Does that mean that there were no quadriplegics?

Cone

There were a few.

Landes

Did they have attendants?

Cone

No. Actually, they let this one guy in, Jon Wilkins, who I think they allowed somebody to help just a little bit. But there was a woman who was a quad in my dormitory, and she was not allowed to get help sitting up. It used to take her about an hour to sit up because she would try to get up, try to get up, sit up, sit up, and she would fall. All the quads had those quad-type wheelchairs with the little prongs that stick out. They wheeled themselves--you know, there was snow in the winter. It was cold. But there were buses. I just was back at Champaign, and the same old buses are still there. There is no safety flap on those lifts. They had four buses that traveled around the campus on a fixed route. So you would go out and catch it; it would pick up at the different dorms at scheduled times and drop off--you would say where along the route you wanted to get off, and the driver would let you off. Every building either had a ramp and an elevator which they had arranged for. Or if it didn't have an elevator, and you wanted to take the class, they would move the class for you. So you really could take anything.

The program had started out with Korean War veterans living in quonset huts in hammocks. It was real bootstraps: a real do-it-yourself kind of program.

Landes

So the program was founded right after the Korean War?

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Cone

Yes. And the problem was that their concept of independence was that you had to be able to do everything physically for yourself-not that you could manage things to do everything independently with the assistance of an attendant or a motorized chair.

I believe that this guy, Jon Wilkins, was the only person in a motorized chair--this guy who was a quad. And I don't know how he got in. He was living in a nursing home off campus, if I recall correctly. Then later on, they let a couple more people in to live in that nursing home. But if you couldn't do stuff for yourself, you were not allowed to live in the dorms.

Landes

What's your first memory when you enrolled at University of Illinois?

Cone

Well, I had to get a wheelchair, and I ended up getting a used wheelchair. It was hard for me to push it. I got right into what was called the rehab program. All the disabled students went through the rehab program. They were like the personal property of the director, Tim Nugent. You had to do what Nugent said or you were out on your ass.

Landes

You're talking about physical rehab?

Cone

No. It was called the University of Illinois Rehabilitation Program, but it meant the whole business. It meant if you used a wheelchair, you were part of the rehab program. Instead of taking P.E., you went over to the building and did exercises. Or you could take swimming and stuff. You rode the buses; they kept tabs on you. I mean, you were part of their program, although you were an integrated student.

The first thing I had to do, because I had not been experienced with a wheelchair, was go through what was called Functional Training Week, which was where you proved whether or not you could do everything for yourself. I could still walk, but I didn't know how to transfer from a wheelchair to the bed. I had a high bed during Functional Training Week, so I could hold on it, and stand up, and then get in it. But I didn't know how to transfer.

Then the students in wheelchairs moved into the dorms several days before the able-bodied students. I remember I had a low bed, and I didn't know what to do. So the first day, I went down and met Mary Lou, and I said, "I don't know how to get in my bed." [laughs] She said, "Let me show you how to transfer." [laughs] It was just weird. And I was kind of freaked out by the newness of operating out of a wheelchair. I walked up and down

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the halls, but in terms of actually going to classes or something, there's no way I could have walked it.

Mary Lou took me under her wing in the beginning. I hung out in her room for a few days and shared her care packages. Then my roommate arrived. They tended to put all the students in wheelchairs on the same couple of floors in the same dorms. So my roommate was a young woman in a wheelchair who had gone to a segregated--you know, disability-segregated--school in Chicago. She had been a straight-A-plus star student at Spaulding High School for students with disabilities in Chicago. And she didn't have a clue; she immediately floundered academically. It was a real illustration--looking back on it--to me of how bad those special schools were. Jeannie just was completely unprepared academically, and she had been like their star student.

Landes

So Spaulding, among others, wasn't taking the education of disabled people seriously?

Cone

Right [laughs]. I mean, it was a typical special school, I suppose. I didn't even know that such things existed before I got to U of I.

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Life in the U of I Rehab Center

Landes

Kitty, we've been talking about your first semester at the University of Illinois. How were you feeling about being in college? In what ways was it different from high school? What was your take on college? It was brand new to you.

Cone

Well, one of my more positive personality characteristics, I guess, is that I tend to be pretty enthusiastic and to throw myself into situations that I'm in. For whatever reason, I've always tried to put a positive spin on where I was at. On the one hand, I threw myself into the college experience. I went through sorority rush, and I pledged a sorority, and I threw myself into the activities that were run by the Rehabilitation Center--which we called the Rehab Center. For example, I tried out for and became a University of Illinois Gizz Kids Wheelchair Cheerleader.

Landes

Gizz Kids?

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Cone

Yes. That stood for Gizmo, which stood for catheter bag. But no one on the outside ever knew that, supposedly. Anyway, there was a big emphasis on wheelchair sports at the U of I. The Gizz Kids team played against other wheelchair basketball teams, and they were very, very good. So if you wanted to fit in to the Rehab Center culture, you got involved in wheelchair sports. Or if you were a girl, you became a wheelchair square dancer; Mary Lou Breslin became a wheelchair square dancer. I became a Gizz Kids cheerleader.

I picked out my classes, and I had decided early on that I was going to major in English literature. But one of the things that happened to me that in some ways was kind of ironic--because it combined my snobbishness with what later became my rebellious streak--was that I was just disgusted by the quality of the education at the U of I. You know, when you're a freshman or a sophomore you have to take a lot of--what do you call those courses?--you have to take Rhetoric 101, and--

Landes

Basic courses?

Cone

Yes, prerequisites or whatever. And I had come, in spite of the fact that I had had this very checkered high school career [laughs] because I had gone to five high schools--I had gone to really, really good high schools, and I had become accustomed to quality teaching and small classes and a lot of attention towards real intellectual striving. And I thought when I went off to college that I was going to be surrounded by ivy and people talking about lofty ideas.

Instead, I was really shocked that I would take--I can't even remember the classes I took--like Psychology 101, and you would go into this huge auditorium, and the professor would be lecturing. Then you would go and have a discussion session one time a week with a teaching assistant, and the tests were sometimes multiple choice tests, and I was just very disappointed. I did have some great teachers in college, but they were the exception. So I was very critical of, I think, just the fact that I was at a big university--probably that was part of it. I had wanted to go to one of the Seven Sisters or someplace that I felt had a more--I don't think it was prestige; I think it was really, you know, where it would be more academically challenging.

So I got into this mode of just skipping my classes and borrowing other people's notes and then just going in and taking my final exams [laughs], which was my absolute modus operandi by the time I got to be a senior.

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Getting Involved in Politics: Civil Rights

Landes

Early on, when you first started to do this, what did you do with your extra time?

Cone

Politics. That's what I did--

Landes

The first semester?

Cone

No. The first semester I was getting involved in my sorority, and I was doing stuff with the Gizz Kids cheerleading. I think I probably did attend that first semester, and I was just learning my way around the school. But one of the absolute seminal events --well, that's kind of a double entendre [laughs]--in my life was that I met this guy who was in the rehab program named Rudy Frank. Rudy sort of targeted me, and I don't know why.

Landes

Rudy was disabled?

Cone

Yes. Rudy was quite severely disabled from polio, and he walked very slowly--and I wonder, if in any kind of rational scheme of things if Rudy shouldn't have been in a motorized wheelchair. But this was the U of I [laughs], and they would never have suggested that to him. An interesting thing about many people who went to the U of I is that they got this ethic that they had to do things for themselves and they never changed. A lot of people who went to U of I didn't give up their push chairs until it was absolutely, absolutely necessary. They would just exhaust themselves because we had this idea that you had to do everything physically for yourself that you possibly could.

Anyway, Rudy was pretty severely paralyzed on one side; he had one arm that just sort of dangled, and he wore a brace on that side. He was such a brave, brilliant man. Rudy was probably four feet tall? I'm not good at heights, but he was very, very small and very, very frail. You could knock Rudy over with a finger. And Rudy marched in Selma. He was just that kind of a guy.

Landes

In the Selma, Alabama, march of 1965?

Cone

Yes. So anyhow, Rudy was very active in the Young Democrats, and he was active in the NAACP--you know, the civil rights activities that were going on. And he just targeted me and baited me about the fact that I considered myself to be a Republican--not in a mean way, but he would try to always engage me and talk to me about politics. Then when he realized that I was interested in issues of race discrimination, then he really targeted me. But he

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was also interested in me as a girlfriend, so then we started dating. We went out off and on for a few years. I think actually I got involved in politics through Rudy and then started dating him.

Landes

Now you had already had a strong interest in the issue of race and civil rights. When you say "getting involved in politics," what types of political issues were you now getting involved in as you went through your first semester at the University of Illinois?

Cone

There were things happening to build the civil rights movement in the South, and there were also activities that were local like--I guess it was a year later--gee, what were we supporting? The Fair Housing Act? Something to do with housing.

Landes

Housing discrimination?

Cone

Housing discrimination against--yes, well, it was part of a coordinated effort around housing discrimination. There was something happening in Congress. The Board of Realtors in Illinois had taken a position--I think it was the Fair Housing Act--I would have to look at the newspaper clipping that I dug up to find out exactly what the issue was--they had taken a position against banning discrimination in housing. And there was an issue on the political agenda that was hot. A group of black ministers in Champaign called a demonstration for the Board of Realtors, and they knew that it was going to be a sit-in. They did know that. But they basically left that part of it to the students, I think, because--I don't know why.

In any case, we made very much of a local link, because Champaign at that time was extremely segregated. I'm not sure I have the details right, but we used as an example what was called the North End, which was the ghetto in Champaign; it was impossible to buy a house outside the North End if you were black. It seems to me that the university had recruited a guy to the political science department, a professor, who had been the head of the poli sci department at Stanford or something. Very distinguished man. He was black, and he tried to buy a house in Champaign and couldn't find a house that was the kind of house that somebody of that stature would be living in, and so he didn't take the job. There were just horror stories about Champaign's segregation. We were also talking about segregation in Champaign itself, but those were the kinds of issues.

I remember campus NAACP meetings which were very integrated --black and white. People would come and give reports on what was going on in the South, and we would try to raise money to send to

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civil rights workers in the South. I remember that we sang freedom songs. People would come up from the South, and we would all sing freedom songs, and then we'd pass the hat, and then we'd talk about what kind of organizing we needed to do to draw attention to what was going on with them. So it was that kind of thing.

Landes

You spoke of Rudy Frank. Was he also talking to you about disability politics? Politics having to do with you and him being disabled?

Cone

Not at all. Rudy went on ultimately to work in the Rehab Services Administration, but before he did that he was working in poverty programs--he went on to a career in the federal government. He worked in different poverty programs. I know that one of the things [laughs] he did--it was some experimental thing--was to fund the Blackstone Rangers, which was this gang in Chicago, to try to help them. I don't think it was a successful effort. I just remember that because it sticks in my mind.

The thing that we thought about disability--the prevailing ethic at the University of Illinois was that the world is the way it is. That's kind of ironic because everything was accessible at U of I: there were ramps; they would get you a class anywhere you wanted; they had buses, the dorms, everything. But the prevailing ethic was that the world is the way it is; you need to be prepared to deal with whatever you encounter, and you just go out there and deal with it. For example, we were not ever supposed to get pushed in our wheelchairs even though sometimes there was a lot of snow, and it was fifteen below zero with the wind chill factor. We weren't supposed to get our wheelchairs pushed because, "If somebody saw you getting a push across campus, and they were a prospective employer, they might think that a person in a wheelchair could not work independently." And you could get called on the carpet for that.

Landes

Was there any sense of advocacy? Were any of you advocating with the administration of the rehab center for changes in policy?

Cone

Not really. I heard later that Susan Shapiro once went to the city council to advocate for some position and that the guy who was the head of the Rehab Center actively opposed her and demeaned her.

The Rehab Center had absolute power over who got in to the University of Illinois. If you had a disability, you had to go through the Rehab Center. They could let you in or they could keep you out. If you were considered too severely disabled, you

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couldn't get in. The only advocacy that I ever engaged in with the Rehab Center involved myself. When I was in my junior or senior year, I wanted to move out of the dorms because in those days women had to get permission--they couldn't live outside the dormitories, I think, until they had graduated or reached twenty-one or something. I'm not sure what the rule was, but you had to live in the dormitories. If you lived in the dormitories, you had to be in by ten o'clock at night--unless you were a senior; I think you got to be in at eleven, and you could stay out until one on weekends. The men were allowed to stay out all night every night [laughs]; they didn't have any curfew, but women did.

I was getting weaker, and I wanted to live on my own; cook and--this is later, obviously. I went to the dean of women and asked her if I could get an exemption to move into an apartment. She asked why, and I said, "While I still am able to stand up, I want to have my own apartment and cook and live on my own. And I have someone who will be my roommate." She said, "It sounds good to me," and she was approving it, and then she said, "Well, let me just check with Tim Nugent," the head of the Rehab Center.

I thought, Oh, Lord. Tim did not like the fact that Rudy and I--and by this time Mary Lou Breslin--were involved in political activities, because we were campus organizers on the left. So he asked me to come and to bring my aunt, Elsie Springer. She went with me to advocate on my behalf to let me out.

Landes

Which aunt?

Cone

Elsie Springer. My mother's sister, who always sort of took the place of my mother.

Two things that he said stick in my mind. One was, "You know, Kitty, they don't really know that much about muscular dystrophy. They don't necessarily know that you're going to get weaker. You could be getting weaker from all these extracurricular activities like all these protests." Which is an absolutely absurd thing to say. I said, "I really want to have a chance to cook and to have my own apartment and to live on my own." And he says, "Are you sure you don't want to just play house?" Which was just completely mortifying to me in front of my aunt. I mean, it sort of meant, "Are you sure you don't want to just go out there and have sex?" [laughs]

Anyway, by that time I was trying to push away from the Rehab Center; I perceived it as a very controlling kind of operation because they wanted to maintain the image of everybody

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in the program. They also were so oriented towards wheelchair sports which I had begun to think was just a replication of the whole sports ethic of "top dog wins." So I had pretty much pushed off from the Rehab Center and was no longer participating in their activities.

Landes

Are you still now talking about your first year?

Cone

No. That happened in the third year, probably. Second or third year.

Friendship with Mary Lou Breslin

Landes

Let's go back and talk more about the first year. You've talked several times already about Mary Lou Breslin, who later becomes a colleague of yours at the Disability Rights Education Defense Fund. Would you say a little bit more about your early relationship with Mary Lou?

Cone

Mary Lou and I became friends my very first day in the dormitory. She had polio, she was very used to her wheelchair, and a very, very smart and independent person and knew how to operate. She knew how to transfer from her wheelchair into her car and into her bed and was just very confident in how to operate as a disabled person. I didn't really have a clue. So we became friends and--

Landes

Was she also a freshman?

Cone

She was also a freshman. I became friends with numbers of the freshman class who were wheelchair students. That really was who was in the rehab program: wheelchair students. Or students in wheelchairs, as we would say now.

Mary Lou and I were friends. We went on tour together with the Gizz Kids. Mary Lou was a wheelchair square dancer.

Landes

So you traveled around Illinois or the Midwest?

Cone

We traveled around the whole Midwest during spring break doing demonstrations of wheelchair basketball. The Gizz Kids would play--I don't know--the local disc jockeys would get into wheelchairs and would play the Gizz Kids, or we would play the local high school basketball team or something like that, and of course they always lost. They were trying to figure out how to roll the wheelchairs, and the Gizz Kids cheerleaders would cheer,

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and then we'd go into the next town. There was a lot of drinking and making out, and it was a fun thing except there was no heat in the buses, and it was freezing cold.

Landes

So you and Mary Lou were on these trips together?

Cone

Yes, and we were friends. We weren't best friends, which we are now. We remained friends--Mary Lou moved to Chicago, and I stayed in Champaign, and then I visited her and her roommate in Chicago one time when I was having surgery on my face, and they took care of me. After I left the U of I, I moved to Chicago, and I saw Mary Lou. She was doing different things than me; I was completely involved in politics at that time, and Mary Lou was working and hanging out with a hippie crowd, I'd say. She did a little bit of politics. We were friends, and then over time I got out here, and I ran into somebody at a demonstration. He said, "I'm staying with Mary Lou Breslin." I got in touch with her right away, and then she ended up coming over and staying at my house for a while. Then she moved to an apartment just several blocks from where I lived.

Landes

This is much later.

Cone

Yes. Then we really were colleagues together at CIL [Center for Independent Living], and we worked together in the movement. She became very involved in the movement and became, I think, one of the most important leaders in the country as the executive director of DREDF, during the whole period that the ADA [Americans with Disabilities Act] was being debated. Now Mary Lou and I go to the opera together [laughs].

Landes

Let's go back to that first year at the University of Illinois. Did you all talk politics much at that time?

Cone

Mary Lou and I?

Landes

Yes. Did you work in politics together?

Cone

She got involved in it later. Rudy and I were the only people with disabilities who were actively involved in politics my first semester--or second. Probably I got really involved in my second semester.

Landes

And what were some of the things that you did that first year? Political involvements.

Cone

It was all civil rights stuff. All of it was through the NAACP. I still considered myself a Republican. I remember the guy who

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was head of the campus Democratic club, a professor. He said to me one time, "You may be a Republican now, but when you get going you are really, really going to be something else." [laughs] I didn't make any connections between race and anything else--class, anything.

Politics: Elected to Student Senate and Civil Rights

Landes

Is there anything else that you'd want to say about that first year at the University of Illinois?

Cone

I ran for the student senate, and I ran against three other people and got elected. It was an odd combination. I was leading two lives; my sorority sisters had no idea that I was very involved in--when you're in a sorority you usually live in the sorority house. But I had to live in the dorm because the sorority house was inaccessible. I had this other life apart from them [laughs]. So my sorority sisters thought it was absolutely fabulous that I was running for student senate, and they were campaigning for me. Girlfriends in the dorm were campaigning for me. Stupid signs, you know: "Vote for Kitty" with a cat on it or something like that [laughs]. The liberal students on campus threw their weight behind--there was a small group of us that ran for student senate. I kind of think Rennie Davis might have been running that time. His girlfriend, Liz Krohne, was running.

Landes

Rennie Davis was later active in the antiwar movement?

Cone

Yes. He left, I think, after my first year. But I'm not sure about that.

Landes

So did you win that election?

Cone

I did win, yes.

Landes

And that was an election in the spring of 1963 for the following year?

Cone

Yes. And that was quite an impressive thing to be elected to the student senate. It all came very easy to me; I'm not sure I was up for it. I do remember one debate that absolutely disgusted me. Liz Krohne managed to get a proposal before the student senate that condemned what was going on in Birmingham. Now when would

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that have been when they were using the firehoses and the dogs to attack the demonstrators? Would that have been '63?

Landes

My guess is May or June '63.

Cone

I guess I had been seated by that time, and there was this big debate over whether fire hoses were actually--you know, the wording was "brutal" or something like that. How anyone could doubt that being shot down with a fire hose is brutal, I don't know. So I guess I was actually seated, and then that summer my mother died.

Mother Dies; Kitty Drops out of College

Landes

Your mother died in the summer of 1963?

Cone

And I was going to summer school.

Landes

That must have been a complete shock to you.

Cone

Actually, it was a complete shock to me. I believe I mentioned earlier that my family tends to not emphasize what they consider--I consider this a real problem in my family--that they don't talk about things that are considered unpleasant or difficult. You just deal with them. My mother--I think this is partly military medical care--had very advanced throat cancer and was literally not able to swallow.

Landes

Did you know she had cancer?

Cone

No. I knew she had something, but she had gone from Augusta up to Washington to visit my aunt, who immediately took her to Georgetown Hospital, and they hospitalized her and operated on her. And she died on the operating table. I had been talking to her on the phone, and she was writing to me, and I was writing to her. She never said she had cancer; nobody ever told me she had cancer, nobody ever said to come and be with her--I'm sure they didn't expect her to die on the operating table, but she was quite weak from the cancer. I was sitting in the lounge in my dormitory with somebody else, and this older cousin--my mother's first cousin--had driven over from Danville, Illinois, and she said, "Kitty, can we go to your room? I need to talk to you." So I said, "Sure. Can I just finish up what I'm doing here?" And she said, "Sure." Then we went down to my room and she said, "I'm so sorry I have to tell you this, but your mother died today."

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Cone

I was completely shocked and disoriented and didn't even believe it for like the first few hours. I did believe it, but I just kept saying, "I don't believe it. How could she be gone?" So I dropped out of school for about a week or so and went over and stayed with my aunt and my grandfather. My grandfather lived in Champaign.

Landes

So you were going to summer school?

Cone

I was in summer school. I went to the funeral and then went back to school. One of the things that I think is kind of interesting about--it doesn't have anything to do with my mother, but it has to do with the rehab program and how outrageous it was. There was a young woman who had come into the rehab program that summer, and she had that kind of birth disability where you have really short arms and legs, and she pushed her chair--there was another guy in the university who had this same thing--with her arms very, very slowly. And she was not able to transfer on and off the toilet. But they didn't find out about it because before the summer semester they didn't have functional training week--which is where they weeded out the people who could not do everything for themselves.

So she got in and somehow or other I ended up volunteering, I guess, to take her to the bathroom a couple of times a day. She was a little immature, and there were issues that somehow or other there should have been some way of resolving this--but I would help her in the morning because I could still stand up. So I would stand up and hold her wheelchair and then help her slide onto the toilet. Then I would meet her at five o'clock before dinner or something and help her go to the bathroom again.

She probably had some other people that she asked occasionally, but I did remember that this was my responsibility to help her--not through the Rehab Center; it was completely undercover. I remember going to her and saying, "I'm going to be away for a week. What are you going to do?" And she was just really upset, really upset. I remember saying, "I'm sorry, I can't deal with this right now; my mother just died." And I think when I came back she was gone. I think she had just fallen through the cracks. She didn't have any way to go to the bathroom. She didn't come back the next semester. It was so stupid. They could have hired some non-disabled person to help her go to the bathroom.

Anyway, my mother died, and so after--

---

Landes

Did you go back to the funeral?

Cone

Oh, the funeral was in Champaign; that's where my mother's family is from.

Landes

So the family gathered in Champaign. So you took about a week off of summer school?

Cone

Yes, well, while they were shipping her casket--my aunt was there with me, and I was writing letters to people who wrote sympathy letters. Then I went back to summer school. After summer school was out--

Landes

That must have been hard to go right back to summer school.

Cone

I don't think--let's see, it was July 11, so probably summer school ended not too long after that. I'm sure that everybody in the family got together--you know, my father and my aunt--and just decided the best thing for her is to finish up. You know, she's doing two courses or whatever. So I did.

Then I went to Washington and stayed with my aunt after the semester ended. My father came to Washington and got me and my brother, who was staying with a first cousin on my father's side. He drove us back to Augusta. He had given housing to this young military couple who were supposed to be housekeeping, but the wife did not know how to cook. So I decided I was going to take care of my father for that semester, and so I dropped out of school for that first--

Landes

So this is the fall semester of 1963?

Cone

Yes. I dropped out of school, and I stayed in Augusta. My best girlfriend in Augusta had gotten involved in the USO. So I got involved in the USO--

Landes

The USO stands for what?

Cone

I think it's United Servicemen's Organization. But it basically was a place that young women went and danced with GIs. That kind of thing. We played cards, and we danced, and we went on picnics, and we went to the movies. So I was doing that and dealing with my father. Oh, and I was teaching Sunday school; I was still a faithful Episcopalian. Then I went back to school.

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Home in Augusta, Georgia: Racism and Civil Rights

Landes

So you spent the fall semester teaching Sunday school, cooking, taking care of your father, back in Augusta?

Cone

Yes.

Landes

Did you get involved in any aspect of politics, civil rights, while you were there?

Cone

I think this was the period when I tried to join the NAACP in Augusta. Remember I told you that?

Landes

Yes, you mentioned that before.

Cone

And I think I told you before that it might have been during my senior year. It was during this period. And I asked the priest at our church, the Episcopal church, and he said, "Call so-and-so at St. Mary's." I thought he meant the Catholic church, but what he meant was the black Episcopal church. And I got this horrified reaction from Monsignor Burke over at St. Mary's Catholic Church.

I also got into a little bit of hot water because I used to use the Sunday school class as a propaganda class [laughs]. I think I was teaching first-graders, and I would talk about the Good Samaritan or I would talk about "Jesus wants us to love everybody, and that means we don't just love white people but we love Negroes and people of all different colors." Some of the parents complained, I think, and the priest at our church was from the North so he tended to defend me.

Then I had this incident at the USO where I think I probably did more harm than good. There were two USOs: there was the white USO and the black USO. I was of course working in the white USO--I wasn't working, it was volunteer. And a lot of times I liked to sit at the front desk: when guys came in they would check their coats, and we would tell them what kind of activities there were and stuff. So I was sitting at the front, and a couple of black GIs came in, and I just could not get the words out of my mouth that you're supposed to go somewhere else and that you're not welcome here--that kind of thing. You were supposed to say it in a nice way: "Oh, there's another USO--" I don't even know [laughs] how you can say it--"for people like you." I couldn't say it. So they came in, and of course here were all these white people, and then there was like this very uncomfortable period of time, and then someone told them, "You're in the wrong place; you need to go down the street."

---

Augusta of course was completely segregated at that time. Everything was completely segregated.

Returning to College and Politics--Friends of SNCC, 1964

Landes

So you went back to the University of Illinois for the spring of 1964?

Cone

Yes, '64. At that time--was that the year of the [Barry] Goldwater election campaign?

Landes

That spring would have been primaries, and then he was nominated that following summer.

Cone

Right. Well, at that point I became a liberal Democrat. There were some women on our floor in the dormitory who were good friends of mine--two of them--who were "Goldwater Girls" at the convention--

Landes

Disabled women?

Cone

No. I became notorious at this time because I would take people into my room and play Joan Baez songs for them, and Bob Dylan--things like "What Have They Done to the Rain?"

By this time, I was--when did SDS [Students for a Democratic Society] start? When was the Port Huron Statement [published]?

Landes

Early sixties.

Cone

By this time, I had fit my displeasure with the way the university ran--you know, the quality of the education--into the SDS analysis of the big campus and how meaningless a lot of what we were learning was. I had moved significantly to the left, and I was in the left wing of the Democratic party. I guess I was in the Young Democrats. I must have been in the Young Democrats. And I remember that in that election--after that election--that was the last election I ever voted for a Democrat. I voted for Lyndon Johnson.

[tape interruption]

Cone

I voted for Lyndon Johnson because I thought that he was--we were all very scared of Barry Goldwater, and Lyndon Johnson had--what was his famous quote about not sending American boys into--anyway,

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the big thing with Barry Goldwater was that he was going to bomb North Vietnam, that he was going to bomb Vietnam. And immediately after the election Lyndon Johnson started to bomb and escalated the war and sent lots of troops in. That was, as I said, the last time I voted for the Democratic party.

I was very involved in Friends of SNCC [Student Non-violent Coordinating Committee] in '64, and we did things like sponsor the SNCC Freedom Singers to come and sing on campus. We arranged social things and housing for them. We raised money for bail.

Landes

Bail for the people being arrested in the South?

Cone

Yes. We had a demonstration in May 1964 in support of national civil rights legislation that--evidently the National Board of Realtors was opposing the civil rights bill. So we had a picket at their local office, and we also were focusing on the terrific segregation in Champaign. A number of us got arrested. I ended up getting a whole lot of news coverage because my grandfather had been the president of a bank there, and the family was very well known in Champaign.

Landes

And your uncle was a congressperson, right?

Cone

From that area. And so I ended up getting on the front page of the papers then, going out over the UPI/AP. The Augusta Chronicle called up my father and wanted him to make some sort of statement. My aunt thought it was kind of amusing. I don't know that she really thought it was amusing, but what happened was that everyone else got bailed out by the NAACP lawyer, and my family machine went into operation and bailed me out the night before and took me back to my grandfather's house. So my grandfather was there, and he had a nurse, and he had servants who were black and whom I had known all my life--Ruth and Louis. Louis brought me breakfast in bed the next day. The nurse gave me a tranquilizer, which I never had a tranquilizer before in my life. And Louis brought my breakfast up the next day, and he said, "No matter what they say to you, you did a good thing." So that was my clue that there was something going on with the family.

My aunt called and said, "We're going to get the family lawyer to represent you--"

Landes

Your aunt is--

Cone

Elsie Springer. "Don't worry about it. Your uncle Bill and I just want to know if you're okay." Well, the family lawyer at one point--I don't know if he had been drinking or what--when I was

---

back in the dorm, he just insulted me. He swore at me. He said, "You keep your goddamn little opinions to yourself," or something like that [chuckles]. Nobody ever talked to me like that. I was completely outraged that he was talking to me like that. So I called up my aunt and said, "You know what Mr. Wheat said to me?" [laughs] So she called the lawyer and said, "Don't talk to her like that. You be polite to her."

As far as I know, the NAACP got everybody else off, but I ended up getting some misdemeanor or--the family lawyer pled me guilty [laughs] while everyone else got off. How they got off I don't know.

Estrangement from Her Father

Cone

At that point my father became--this was the initial point of the rupture between me and my father--my father was very, very upset with me and said that I had disgraced the family and that as far as he was concerned I was no longer his daughter, I was disinherited, and just yelled at me and yelled at me and then hung up the phone. Then he called me back and would yell at me--this was back at the dormitory--and hang up on me again. He was just outraged. My father came from this very Southern tradition; he was a Southerner. He thought this was the worst thing. My uncle, who was the only one who was directly affected by it, thought it might get him a few liberal votes--because he was a conservative Republican.

That began my estrangement from my father. He just could not put my politics aside. The absolute final blow came when I went to this antiwar demonstration on April 15, 1967. I actually organized it at the U of I. My father called up my apartment and didn't get me, so he called my grandfather's secretary who said, "Oh, I think she's gone to an antiwar demonstration." [laughs] My father also completely believed in the military. He was in the military, his father had been in the military, and he thought I was just absolutely trying to destroy the fabric of the United States and everything he stood for and believed in. And he called me up after that and just disinherited me again and said--

Landes

So over this three-year period from 1964 to 1967 the rupture became increasingly permanent between you and your father?

Cone

Yes. And it never got resolved.

---

Landes

To this day?

Cone

Well, my father died about ten years ago. The last time I went to see him my son, Jorge, was one--that would have been about thirteen years ago. I wanted him to know Jorge, and so I arranged to go and stay with him. He had a perfectly beautiful accessible room that he built on the back of the house with an accessible bathroom; he thought I was going to come back and live there after I got out of college.

Landes

This is in Augusta?

Cone

No, this is in Florida now.

Landes

Where in Florida?

Cone

It's a strip between Jacksonville Beach and Ponte Vedra Beach. It's on the beach. He comes running out to the car before I ever even get out of the car, and he says, "I don't know if you should stay here. Our heater isn't working." I said, "Dad, it's okay. I live in a much colder place, and I don't even have a heater." This is when I was living in Tijuana, Mexico. And he said, "I don't know, I don't know; maybe you should go to a motel." I just said, "I'm coming in. We've come to visit you, and we're going to stay with you." And I had visited him--my father never ever visited me after 1964. Occasionally I went to visit him, and there was always some hideous thing that happened. We would get into fights about politics, and I would try my absolute hardest not to fight with him about politics, and he would always provoke something. And I'm sure I played my part in it, but it was--

Landes

How did this make you feel, being separated from your father?

Cone

I didn't realize what a sad thing it was until I became a parent myself. I did not realize the profundity of it until I saw these letters that my aunt Elsie--my mother's sister--had written to my father over the years. One of the things that my father did in 1964 was--my mother had inherited quite a good deal of money from her father. Not inherited--he had just given it to her; he was still alive. So when my mother died, she left it to me and my brother. That's how her will was, that it went to me and my brother. My father challenged the will--it was all money from her father--with the cooperation of my mother's side of the family. He talked to my aunt and uncle and my great-aunt who was on my mother's side and who was also his stepmother on his side. They all said that was fine, because he told them he was doing it for tax reasons, to avoid inheritance taxes. A lot of it was actually farmland and then some part of it was stocks and bonds. So he

---

took like half of it, I think, leaving the farmland, and then he gave my brother--who was not disabled--this farm that was worth like a quarter of a million dollars, and he never gave me anything.

And so my aunt started writing him these letters about 1968 --because at this point I was needing money. First, I wanted to buy a house, and then I needed money for attendant care, and then I needed it for all sorts of things. So my aunt was writing letters to my father first and foremost about--very nice letters; she's very diplomatic. Her letters said things like, "I've just been visiting Kit up in Chicago, and she has the nicest friends, and she's very happy in the work that she's doing." This was all political organizing. "She seems quite healthy, but she is getting weaker. She told me that you had said you were coming up, you were going to go to a Princeton reunion and that you might drop by and see her. I understand that you didn't go, and I know she was disappointed; she wanted to see you. Of course, all kids like their parents to check in on them now and then." You know, this kind of thing. Then my father would always ask for her advice. Then it got into the money stuff because my aunt was mad that my father didn't give me back any of the inheritance. She knew I needed it to live off of. I was getting some stipend from the SWP--

Landes

That's the Socialist Workers Party?

Cone

Yes. And I had some trust money coming after my grandfather died the year after my mother died. So I was getting trust money from him. But it's more expensive if you're disabled; you have to live in an elevatored building, you have to take taxis, and all the expenses.

There's this very interesting chronology of letters from my aunt to my father saying--

Landes

Were you aware of any of this?

Cone

No. I didn't know it was going on.

Landes

But how did you feel at the time?

Cone

I remember about 1966 or 1967 thinking--this is a sick attitude--but I remember thinking, Well, here I am. I still thought I was going to die pretty early. I thought I was going to die about thirty. Here I am, I have this fatal disease, my mother's dead, my father hates me--I've got all these notches on my belt, and I am one tough cookie. I remember thinking that that was my

---

defense: to think that I've got these lousy things that I've experienced--but I don't even dwell on them.

Landes

That you had persevered.

Cone

Yes. It was my family ethic.

SDS and Radical Politics

Landes

After the civil rights demonstration in Champaign in May of '64, what were additional political activities that you were engaged in for the next year or two?

Cone

I became very involved in SDS.

Landes

Students for a Democratic Society?

Cone

Yes. I was really one of the leaders of SDS, but at the time leadership--the male leaders of SDS tended to orate and lead the meetings, and the female leaders of SDS tended to organize things behind the scenes and run the mimeograph machine and service the men. And cooked the dinners for the visiting radical dignitaries who came through. I can't remember if we sponsored it or we got the--I think it was called the Institute on Industrial Relations; it was a department on campus--to sponsor radical leaders from the thirties and forties to come speak. One woman who had been Trotsky's secretary, Raya Dunyevskaya, came; Max Schactman came. Who would have been a famous Communist party person? Earl Browder? Could it be that Norman Thomas was still alive? I think Norman Thomas came. Very important radical leaders. Then we would cook dinners for them afterwards.

I became the editor of this newsletter called The Spark, which was a newsletter for all the campus left organizations: SDS, Friends of SNCC, the Young Democrats, Student Committee on Political Expression, and the NAACP. That was a lot of work. We got letters from different--it was a lot easier with a computer [laughs]. We were laying it out and running it off on a mimeo and hand-addressing all this stuff.

Then I got very involved in organizing against the war. I remember that we had a demonstration in 1966--it was an International Days of Protest--in October, I believe. We organized something outside the armory at the university; there was a missile there. Some non-functional missile that was outside

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the armory. So we had a demonstration and an all-night vigil, and the next day was homecoming. We were passing out these very milquetoast leaflets saying, "Please consider negotiating to end the war," or something like that. People just reviled us. I mean, I think people spit and stuff.

Landes

At the football game.

Cone

Yes. They were going into the homecoming game--thousands and thousands of people. We were just this very small, little grouping of people. And then--when was the moratorium? That was 1969, wasn't it? It also coincided with homecoming, and by that time the Block I--you know, where they turn the colors over and make designs--made peace signs, and some of the fraternities and sororities even had peace themes on their floats, and decorations. And the whole campus was antiwar at that point, in just such a short period of time.

---

---

##

Cone

The left was growing during those years. Mostly we operated through SDS, and we did a whole variety of things. We published a fairly classy magazine called The Illinois Political, and I was working on circulation for that. It carried a liberal analysis of society. We sponsored a congress on the role of the university in American life.

Landes

This is in the mid-sixties?

Cone

Yes, exactly. I worked on building that and maybe helped on some papers for that. We did a little work on getting hours eliminated for women, but to me that didn't seem really important compared to the other issues that we were working on.

Landes

You mean your curfew hours on campus?

Cone

Right. SCOPE--Student Committee on Political Expression--was working more on that.

One of the big things that happened was that the Free Speech Movement had happened at Berkeley, and--did I go into the Clabaugh Act with you?

Landes

No.

Cone

Okay. There was an anti-Communist act that had been passed by the state legislature in Illinois called the Clabaugh Act, which prevented any Communist or Communist organization from being

---

recognized or being on the campus. I guess it must have been during the '66 elections, because my uncle was running for Congress. There was a real effort to challenge the Clabaugh Act. It was inspired by the Berkeley Free Speech Movement.

So within SDS--actually, the first thing that happened was that the W.E.B. DuBois Club--there was an organizer from the DuBois Club who was on campus, and he wanted to organize a DuBois Club. He was trying to get the requisite eight people necessary to sign up for the club in order to submit for its recognition from the university which would entitle it to hold meetings and be a recognized campus organization.

SDS took a very, very hands-off attitude. So all of the people within SDS who were the more radical ones of us gathered to discuss what to do about the DuBois Club, and we decided that the best thing we could do was we would all join the DuBois Club. That didn't mean we had to participate or anything, but that way they could submit for recognition, and then they could carry out their activities, and anybody who wanted to be in the DuBois Club would have the ability to be in it.

Landes

So for you it was a civil liberties issue.

Cone

Oh, absolutely. The DuBois Club was what I would call a Stalinist organization. It was the youth group of the Communist party. I was beginning to veer in the direction of Trotskyism. Well, not quite at that point, but I certainly didn't consider myself any adherent to the Communist party although I didn't really think there were a whole lot of politics associated with DuBois. I just wanted them to be able to get recognized on the campus, and I knew that people wanted to use it as a way of challenging the Clabaugh Act, which I thought was a good thing. So we're all sitting in this room, and everybody is coming up with reasons why they can't join the DuBois Club. One person said, "Well, I'm concerned about my draft status." Another said, "My father was in the Communist party in the thirties, and he has a weak heart, and he would be very upset." Everybody was coming up with reasons why they couldn't do it. So I said, "Okay, I will join."

We finally got eight people who said they would join. And then there was just this terrible ruckus within SDS. I mean, we were Red-baited fiercely. This person who I very much esteemed as an intellectual wrote this really nasty play about us called The Tolono Six. The only person who really got any flak from joining the DuBois Club was me, which was that the Democratic party--well, my uncle was campaigning around the state with Clabaugh. I don't know if--Clabaugh must have been from our area. But I know that

---

my uncle was appearing on platforms with Senator Clabaugh. And so the Democrats Red-baited my uncle and wrote a letter to the editor of the paper saying, "Congressman Springer should look in his own backyard; his niece is a member of the DuBois Club, and here he is supporting the Clabaugh Act."

The DuBois Club got denied recognition, and then there broke out this big debate with the faculty senate and the AAUP [American Association of University Professors]. Then it became a big issue. The ball started rolling, and at that point SDS and the big SDS leaders decided to invite--I think they invited Gus Hall. They invited some big leader of--no, they invited Herbert Aptheker to come and speak. He spoke on the steps of the student union in order to show that the Clabaugh Act could not stop free speech. Ultimately, I think the Clabaugh Act got repealed.

I was involved in all of these different activities, and by --I would say--1966 and 1967, all I was doing was politics. I was taking the minimal number of courses. I guess I took a regular load in '66, but in the spring of '67, I should have been about graduating by now [laughs]. I only took a couple of courses just to enable myself to remain a student so that I could continue to organize. One of the courses that I took was "Theory and Practice of Communism." It was taught by some liberal who was anti-Communist. I read the stuff--we read Socialism: Utopian and Scientific--it was a survey course of Socialist and Communist works. We were supposed to write a paper, and I was good friends and very impressed by this guy who was a member of the Young Socialist Alliance who encouraged me to write about Trotsky for my paper for that class. So I read The Third International After Lenin, which is a basic Trotskyist analysis of the development of the Soviet bureaucracy and how they used the Communist parties in other countries for the foreign policy and diplomatic needs of the Soviet Union rather than for supporting revolutionary politics in other countries.

So I just became a Trotskyist. And I became an utter Communist, and I was completely convinced. I think I was out of my mind; I got a bad grade on my midterm because I wrote this glowing, glowing thing about primitive communism and how it then advanced to "from each according to his abilities, to each according to his needs." I was just sold, and I never really got bad grades, and then by the time it came time to take the final exam I was just like, "Screw it. I know this; I don't have to go take the final exam." [laughs] I think I flunked communism.

I really had no interest in school at this point except for staying in enough to organize.

---

Landes

You've talked a lot about organizing civil rights and then the anti-Vietnam war movement, and then now you've just been talking about your budding interest in communism and Trotskyism. Had any of your ideas about disability politics changed during this time? Had your disability changed? Were you using a wheelchair much more?

Cone

To answer the first question, no. I didn't associate the disability issues with politics at all. But my disability definitely was changing. I now was really, really dependent on the wheelchair. I still wheeled myself everywhere, but my friends helped a lot.

Landes

Were you still part of the rehab program at this time?

Cone

Yes and no. I was really basically off on my own. I had my apartment by this time. They thought I was really an embarrassment because I was a very obvious person in a wheelchair, and I was just out there in the public eye because I was one of the major campus organizers. So they didn't like me, and I didn't like them, basically. I still was friends with a number of people in wheelchairs--you know, friendships that I had made through living in the dorms and through the rehab program.

Landes

You still did political work with Rudy Frank?

Cone

Rudy Frank had left; he had graduated and gone on to--I guess he was in Washington by that time. Mary Lou had graduated. Remember, I had lost a semester. Then I had just completely dedicated myself to politics for the last two years I was on campus. I left campus in the summer of '67. I had eight hours to go to get my B.A. I never got a B.A.

Landes

At that time it was just not important to you?

Cone

No. I figured I wanted to do politics--that was all I wanted to do. By this time I had this trust fund from my grandfather which was more than enough to meet my needs at that point, because I didn't require a lot of medical equipment or attendant care. I could still do everything for myself--I was still driving.

The one thing my father did do--I completely forgot about this--is that in 1965 I went to Europe for the whole summer. I had gotten this money from my grandfather, and I went to Europe and bought a car. Two friends of mine who were at Carleton College came, and we traveled all over Europe. And then my father came, and we spent some time in Italy. That was the last positive thing--I paid for my father [laughs]. And then in 1966 I went to

---

Europe again, with two of the people from our radical circle--Jim St. John, who spoke Russian and who--this was my way of dealing with attendant care issues because it was just beginning to arise. I said, "I'll pay for all your transportation and hotel and give you some money." Then this friend of mine, Jackie Chase, who was very active in SDS and the whole left community at U of I--we went to Russia. We were in Russia for about a month, and we went to different Eastern European countries, and then we came back and went to France and Ireland.

Doctors' Negative Attitude toward Sex and Pregnancy

Cone

One of the things that did sort of screw me up--I don't know what it was due to, but I still had this idea that I was going to die. Well, this is important. I had a boyfriend that I was sleeping with, and I wanted to have a baby. This is like '66 or '65 maybe. But I didn't want to get married. I went to my doctor, and they had me taking testosterone, I think, or some kind of steroid. That was an experimental cure; they did a number of experimental cures. One was with Digitoxin, another was with Vitamin E, and this one was with steroids, and I was the only female in the control group. It got completely out of control at one point. I started growing a beard, and my voice got really low, and I stopped having periods.

I remember asking my doctor if these pills were going to get in the way of my getting pregnant. I wanted to get pregnant. And the doctor just flipped out. This doctor was the head of the muscular dystrophy clinic in Chicago at the--I cannot remember the name of the hospital. I and two other guys--Kerry Behman and Louie somebody-or-other from South Africa--all used to go up to Chicago to this clinic, and so I asked Dr. Miller if this was going to prevent me from getting pregnant. He was just horrified. I was still walking at this time. He said, "How are you going to take care of a baby? First of all, you might die in five years. You may be dead in five years. If you have a baby, if you get pregnant, you might never get out of bed again. What are you going to do? Are you going to drag this child around in a wagon?"

Now, if you stop and think about it, now I'm fifty-two. And I was twenty or something at the time. People much more disabled than I was at that time have had babies. And what is wrong with the idea of dragging your child around in a wagon, you know? But I was mortified. I kind of idolized this doctor, and I just thought I can never have a baby, and I didn't ever stop to think

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that it was a genetic disability, and that might have something to do with it. Well, it's probably a combination of things; they didn't think a person who had a disability could be a good parent. Also I'm sure the fact that I was single didn't help.

But the doctor fed this information to my aunt, whom I did not even know he was in communication with. So I had this idea that my life was going to be fairly short. Nobody ever said to me anything different. I mean, I just kept living and living and living, and then I began to realize that, "They don't know what they're talking about." But I don't know if it was that or what it was, but I just had this attitude that I didn't want anybody to get committed to me, I didn't want anybody staying with me and feeling sorry for me.

I had this very warped attitude about relationships, the result being that I lived with several men who wanted to marry me and were really in love with me--I didn't live with them; I had relationships with them, and they wanted to live with me, and I did not want to be monogamous. I really broke a couple of hearts. Jim, this guy that went to Russia with us, and I immediately started sleeping together. Then we got back from Russia, and it was like, "Okay. Bye, Jim." [chuckles] He was just completely devastated. Remember how sex was in the sixties? It was like eating or drinking; it was something that you had to have, but it didn't necessarily have to have romantic connotations. Well, I had that attitude to the extreme, but I also combined it with this attitude that I didn't want anybody hanging around while I got all weak and pathetic and having to take care of me.

Landes

So your disability certainly impacted your romantic relationships in quite an important way.

Cone

Yes. One thing that happened was that about that time Kerry Behman, who was one of the people who was in my group, died after months in the hospital. Kerry Behman, my God, the man had Duchenne muscular dystrophy, and he would push himself around the campus in his pushchair inch by painful inch! I mean, if that wasn't ludicrous, wasting his strength that he needed to be studying and everything else, just wheeling around that huge campus--it just makes me furious to think about it.

My disability was definitely progressing. I was pretty much in the wheelchair now all the time, although I could still walk. I walked around in my apartment. I still was very independent; I cooked, and I got everywhere by myself.

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One of the things that I was doing was teaching nursery school at the Birch Village Nursery School in the north end of Champaign, which was the ghetto in Champaign. The Quakers ran this cooperative nursery school, and I was going to Quaker meetings. It was very interesting; they were developing this new system of teaching, which I think has since been discredited, called the Breiter Method. It was being developed at the university, and the idea was that you taught kids--well, I don't want to try to articulate the theory because I was not an education major or anything like that; I was just trying to do my best to work with these three- and four-year-olds. I had the oldest group. Mostly it was like a nursery school but then we would have little breakout times of fifteen minutes where we would say "Bat, like Batman. B-A-T, bat, B-A-T, bat." Repetition, repetition, and trying to teach the kids phonics through this rapid-fire repetitive method. I'm sure I'm completely misrepresenting the method. That was a little bit earlier.

Joining Young Socialist Alliance

Cone

In 1967 I organized this group called The Committee to End the War in Vietnam. If you organized something you undoubtedly got elected to be the chairperson of it.

Landes

This was a campuswide organization?

Cone

Yes. There was going to be this big demonstration in New York in April. So we had meetings where we talked about transportation; we formed subcommittees to reach out to professors, reach out to the community, to students, organize people. The goal was to fill twenty-five buses from the U of I or whatever. So that's really basically what I was doing. And I was just very impressed. The first meeting we had we invited this guy, Dan Styron, who was a member of the SWP and who was working in the Student Mobilization Committee and the National Mobilization Committee in Chicago, to come down and talk. He came down, and he gave an absolutely fabulous talk about the war in Vietnam and the necessity for mass action. Afterwards we must have gone back to my apartment and talked. He and I started talking about socialism, and I was really, really impressed with him. Shortly after the demonstration--

Landes

In New York?

Cone

In New York. It was huge; it was half a million people!

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Landes

How did you get to New York?

Cone

I don't remember if I went on the buses. I may have flown and linked up with a friend of mine who lived in New York. Or I may have gone on the buses. I don't really remember.

Landes

Did any other disabled people go that you know of?

Cone

I'm sure people went, and I don't know who they were. I don't remember any other people from the U of I going.

So I called up Dan Styron in Chicago, and I said, "I'm just really impressed with you all. I would like to join the YSA." The Young Socialist Alliance. "I don't know if I agree with everything that you stand for, but I would like you to send me some materials, and I would like to become a member-at-large. And then I'm going to go to South America for a month with my cousin, Ann Springer. And when I get back, I want to move to Chicago and get active doing antiwar work and being active in the Socialist Workers Party." So that's what I did.

One other thing that I just recall, thinking about Dan Styron, is that I had become quite a heavy drinker. I never drank during the day, but my routine was I would get up in the morning, at like nine o'clock I would go take my one class or whatever it was, and then I would go over to the Student Union and just work with the antiwar committee or whatever activities I was working on. I was doing full-time political organizing. And then I would have dinner, and then we would maybe have some meeting. As the meeting was winding down, we would all drink. But I drank to excess. I would just drink until I got drunk, and then I would fall in bed. So that was another thing that was happening to me, that I was evolving into a heavy alcoholic, but I was not aware of it at all.

Landes

When did this start? Do you remember?

Cone

I think it's just in my genes [chuckles]; I never ever drank just to have a beer. I started drinking when I was a freshman, and you know how college students go out and drink pitchers of beer and play games where you throw things at the ceiling and if they don't stick you have to chug your glass and things like that. Well, other people would be able to stop, but when I drank I just drank to get drunk; that was my objective. If I didn't get drunk, what was the point of drinking?

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III Traveling in Latin America

Cone

I did go to Latin America. I went to visit my father that summer.

Landes

Which did you do first?

Cone

Oh, I went to visit him. Then my cousin Ann came down to Florida, and I think we flew out of Miami. We flew to Venezuela, and we went all around. We went to Argentina, we went to Chile, we visited a girl who had gone to the same boarding school that we both had gone to when I was in ninth grade. She lived in this mansion-like place, it seemed to me at the time.

Landes

In Chile?

Cone

Yes, in Santiago. She was married. And then we went to Peru, and that was when we went to visit Hugo Blanco. I think I'm losing my voice. I have to stop.

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III Developing Political Organizing Skills in the Young Socialist Alliance and Socialist Workers Party

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Trip to Latin America, 1967

Landes

Kitty, you were talking about your trip to Latin America. What impact did that trip have on you, your life, and your politics?

Cone

That trip was a real contradiction in experiences because on the one hand, my uncle had arranged through his office for the embassies to meet us everywhere, in all the countries that we went to. So we were taken to fancy restaurants and museums and operas and so on and so forth. Then when we got to Peru, I wanted to look up Hugo Blanco's mother.

Landes

Who was Hugo Blanco?

Cone

Hugo Blanco was a Trotskyist. He was a peasant organizer in the area around Cuzco, who had led the peasants in a successful effort to hold on to their pieces of land. I believe their slogan was "Land or Death." It was very much of a mass mobilization. It wasn't a small group of people with guns motivated by an ideology; it was a large group of peasants. Hugo Blanco had been their leader. Then the right-wing government had captured him and had imprisoned him on this island prison called El Frontón, outside of Lima. I think at one point he had been condemned to death, but no one knew how long he was going to have to be there, and there was an international campaign to try to free him and save his life.

When my cousin and I got to Cuzco, we found Hugo's mother and gave her a bouquet of roses. She was very, very thrilled that people from another country were supporting her son. It was kind of interesting, because the person who had taken us under his wing in Cuzco was the police chief, and he had great admiration for Hugo Blanco. That to me was astonishing. He took us to find

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Hugo's mother. Anyway, she gave us the name of his cousin in Lima. When we got to Lima we looked him up, and at first he was very dubious about having anything to do with two Americans, but when he realized that Hugo's mother had sent us and that we were innocent radicals, he invited us into his home and gave us gifts, pieces of art that Hugo had made. He arranged for me to go and visit Hugo.

The other contradiction, of course, was that even though we didn't have that much money, we were certainly living in the high style compared to the vast majority of people. We were seeing terrific poverty everywhere. It was the kind of thing that makes you feel guilty, because here you are, this privileged American tourist, and the vast majority of people around you are living in very small homes or shacks.

Landes

So even though you had seen some poverty in the United States, this trip was important in that you saw a lot of new things that you hadn't experienced before?

Cone

Yes. We went to Brazil--the favelas, I think they're called--the slums in Brazil are just horrendous. Children wander the streets and they beg and they don't have anyplace to go. We traveled to a number of countries, and we saw an awful lot of poverty. So I was of course completely in sympathy with what Hugo Blanco had been attempting to do.

We traveled out to El Frontón, and there had never been any Americans--according to Hugo--to visit the island before. I had taken him some books. I was reading Deutscher's biography--it's a three-volume biography of Trotsky. All these books were in English. And I had a number of different books that I gave to him. As I understand it, the prisoners there had to sustain themselves, and so their wives or families would bring them food and things to keep them going. Many of them worked and produced little items--crafts or baskets or things like that. Hugo was an artist. He gave us these really funny little carved wooden, Andean dressed cartoon caricatures of birds that he had made, and he gave each of us a wooden turtle that was a jewelry box. We both still treasure those boxes.

We went in this boat that seemed a little perilous. It was all the wives; it was women's day to go out on this boat. Anyway, he and I had formed a friendship that has lasted to this day, and he is now a senator in Peru. He represents a district that has a lot of Indians--an indigenous area. He was exiled from country to country. He went to Argentina, and there was a right-wing coup, and he fled to Chile and lived there under [Salvador] Allende, and there was a right-wing coup, and he barely managed to get out by

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hiding in an embassy. Then he went to Sweden. He's had an incredible life. He's always written to me, and when he comes to the United States he looks me up. He's a wonderful man.

I think that was probably the beginning of my real serious interest in Latin America: getting to know Hugo and reading more about what had gone on in other Latin American countries, like the role of the United States in overthrowing the democratically elected government in Guatemala and installing a dictatorship to protect the interests of the United Fruit Company.

Anti-War Organizing in Chicago, 1967-1970

Cone

When we got back from that trip, I moved to Chicago and joined the Young Socialist Alliance (YSA) branch there. I was assigned to do anti-war work in the Student Mobilization Committee office, which was in the same office building as the Students for a Democratic Society [SDS]. It was on skid row.

Landes

The same building or the same office?

Cone

It was in the same building. We didn't get along real well, as I recall. I think it was on Madison Street. One interesting memory I have is that in 1968, when the election campaign was going on, they literally scooped all of the people off the street. There were a lot of people who would just hang out on the street and a lot of people who were drunk on the street. It was skid row. They scooped them up and then had a presidential candidate's procession down the middle of the street, and it looked like a really, really nice street!

In 1967 I was just thrown into a whole higher level of community organizing.

Landes

How long did you stay in Chicago doing that?

Cone

From '67 to '70, and then I moved to Atlanta in the summer of 1970.

Landes

What was important to you about this three-year period that you did political work in Chicago? In what ways did you grow and develop?

Cone

The YSA and the SWP, the "adult" organization, considered themselves a revolutionary party, and the function of that is to recruit and train and develop people to be leaders. So there is a

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tremendous focus--in addition to building the various movements--on developing the comrades.

Landes

Such as yourself.

Cone

Such as myself. And I had had a certain amount of experience at the U of I, and the issue that really motivated me personally was the war in Vietnam. I did anti-war work literally seven days a week, fifty-two weeks a year. I learned a lot more about coalition politics. For example, I talked about my experiences in SDS, where the women were sort of behind the scenes.

One of the first things I was given to do was in 1967. There was going to be a march on the Pentagon, so there was a rally in Hyde Park, Chicago, to build interest in the march and get people to sign up to go and build it. They were choosing speakers from each group, and I was chosen from the SMC, and Studs Terkel was chosen, and maybe Jesse Jackson--I can't remember who all spoke. I had never spoken publicly to a big, large group of people. I was like, "Oh, Lord, I can't do this. I will make a fool of myself." They said, "Of course you can do it. Just develop some ideas, make it sound like it's representing young people," because I was representing the SMC and I was a young person. I wrote a speech, and I was so terrified I memorized the entire thing, and it was a very good speech.

I would be given responsibilities; over the years I took responsibility for organizing all the high school students in Chicago and all the environs. So that was like over a hundred high schools. I worked with them, but I wasn't organizing by myself; it was the high schoolers who were doing the organizing. They had formed this organization called High School Students Against the War. But I was the person in the SMC office with whom they were in touch, and if they wanted leaflets and they wanted them left under the bushes [chuckles] outside a neighbor's house because of their parents, then I would organize that. I helped them organize several very successful rallies oriented toward youth with bands, young speakers, anti-war films, et cetera. Some of them became movement leaders.

Landes

And the SMC is the Student Mobilization Committee?

Cone

Yes.

Landes

So you're really doing community organizing at a much higher level now in Chicago than you had been in Champaign.

Cone

Yes. In Champaign, with the exception of the sit-in around the housing issue, it was all at the university. But this was all

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over the big city of Chicago, and it involved going to conferences and debating issues with political opponents, and that was something that again I had never done: to go into a large conference with hundreds of people and get up on the floor and debate with people. You were really encouraged to do that. You were given an assignment of representing the SMC.

Landes

So you were developing a wide new range of political skills.

Cone

One of the skills that I developed, that I was taught--and I believe it to the depths of my soul--is that the broader you build something, the better chance you have of success.

Landes

You mean broader in the sense of being more inclusive and more elements within the community?

Cone

Yes. So for instance, in April 1968 we built a demonstration prior to the demonstrations that were organized by the Yippies [Youth International Party] and that were attacked by the police so wildly outside the Democratic party convention. We organized a demonstration that I think we only got 10,000 to in Chicago, but we attempted to involve every single possible organization: organizations from the black community, organizations from Uptown, even groups like the Young Lords--which was a Puerto Rican organization--any women's groups, any labor that we could draw in, and veterans' groups. There are some organizations at that time like Youth Against War and Fascism, that would just call demonstrations in their own name, and they were never--as far as I can remember--as broad.

Developing a Feminist Consciousness

Landes

You mentioned women's organizations. That's in the late sixties, when the feminist movement was taking hold. Do you have memories of those years in terms of any development in your own feminist politics?

Cone

Oh, absolutely. There was a lot of ferment going on over at the University of Chicago. I cannot remember the people's names. I think it was the first August 26th demonstration--I think it might have been in 1969. There was a huge demonstration in New York with a variety of demands. I began to look back on things that had happened to me and realized that I had sort of been oppressed, not just in my own personal life and the direction that I had been oriented as a girl, but even within the movement, within SDS, which I hadn't thought of before the women's movement began to

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mention it. So I started going to different--I don't even remember where--I think I was in some sort of a rap group.

Landes

By "rap group" you mean a women's discussion group?

Cone

Yes. That wasn't what I saw as the political answer. I still saw the political answer being mass action and demands that could change society for women, not necessarily changing ourselves, but I did think it was important to feel support from other women.

Different groups of women got together and decided that we were going to have a demonstration called the "Women March For Women" in Chicago. I was chosen to be the coordinator of this group, which was a coalition of different groups called the Women's Day Coalition, which had an office in downtown Chicago. Our demands looked pretty radical, if you look at them today. It was free abortion on demand--this was before abortion was legal, which I really believed in; I had never been pregnant, and I was sure I was never going to be pregnant, but we had had to help a high school student who had been raped by a cop. It sounds hard to believe, but the Chicago cops were pretty unbelievable at that time. It involved all of this undercover stuff and talking to people and never mentioning their names, and then taking her to another state. It was astonishing to me. Anyway, other demands were free twenty-four-hour child care and equal pay for equal work. And boy, do I ever believe in those things more now than I even did then [laughs].

Landes

So that was a formative period in terms of your thinking on issues as a woman.

Cone

Yes. And one of the things that happened was that there were some very experienced, competent gay women who had been in the women's movement for a long time, with whom I became friends, like Margaret Sloan, who just recently published a book of poetry called Black and Lavender, I think. She was one of the founders of Ms. magazine, and she was a very active member of the Women's Day Coalition. I can't remember all the different groups that women came from, but I think the Meat Cutters might have supported us. It was a very fun demonstration. We had a suffragist who had been involved in the suffragist movement come and march with us and give a speech. Her name was Florence Luscombe. I remember we were all so thrilled that we got her as a speaker.

We got jeered at by men on the street. That surprised me. I made personal changes in my life at that time. I stopped wearing a bra and shaving my legs for a while [laughs]. At that time, I realized that my whole life had been oriented towards getting married rather than having a real profession--having

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majored in English literature. I don't think I really had a concept that I was going to have a career. Our generation of women was the first large group of women, I think, who then went on to have careers. There was a lot of struggle. There just were not women in any significant numbers in law, in medicine, or in all kinds of professions in which today women are taken for granted: of course there were some women lawyers and women doctors. As I told you earlier, I had wanted to be a lawyer and had gotten a really bad grade on a paper because I said I wanted to be a lawyer, and the teacher said that women cannot be lawyers. I understood at that point--it was a whole revolution in my thinking.

Perceptions of Being Disabled: Still Not a Civil Rights Issue

Landes

So you had a growing awareness of discrimination that you had experienced as a woman, and oppression because of being a woman. What about the issue of disability? Were you beginning by this point to draw connections to your being a disabled person?

Cone

Not at all. At one point I lived in downtown Chicago, and I had gotten a lot weaker and I could no longer walk. I got my first motorized wheelchair. There wasn't a single curb ramp. And I was used to curb ramps, because in Champaign, Illinois, there were curb ramps all over the campus because it was part of the rehab program. I used to drive my wheelchair down State Street and dodge traffic. State Street and Wacker Avenue, I must have worked about ten blocks away from where I lived, and I would go to work to and from, and there would be buses and there wasn't even any sympathy about the whole issue. I was just in danger in doing this. I remember thinking, "Why couldn't they put ramps in?"

And then somebody told me that there was this other guy in the apartment building where I lived who was disabled. That was another thing: there was no place to live. Try to find an accessible place. There were all of these apartments and houses that were--what do you call them?--English basements or something, where they're halfway up a flight, so you had to live in expensive high-rise apartment buildings. Anyway, there was this guy in my apartment building who was a businessman in a wheelchair and extremely conservative. But he was thinking of bombing corners because he was so frustrated about the fact that he [laughs]--and I thought, What's the matter with that guy, anyway? That's not the way you go about it. I wanted to have some curb ramps, but it didn't occur to me that it was a political issue.

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Landes

And it sounds like you didn't even have the anger that this neighbor had.

Cone

Right. I didn't. I was frustrated, but I drew absolutely no connection between the civil rights movements that I was supporting and involved in and disability civil rights. I was shielded from the rough realities of being a person with a severe disability in the big city because the SWP was always committed to assisting their members, particularly their members who were working very hard and productively with whatever needs they have, like older comrades who maybe were working on their memoirs or maybe were not even able to be productive. Younger comrades were assigned to work with them, because they had contributed their lives to trying to change society and to working in the party. It was just understood that they didn't have money; they had been working in the movement.

So I lived with this man for a number of years, and when I stopped living with him, the SWP just sent out an organizer and said, "Where would you like to live and what do you need?" and then assigned comrades to live with me. I paid for the house, but the comrades put me to bed and did all my attendant work. I always got driven to where I was going. If a meeting was up a flight of stairs, they'd take me up the stairs. So I didn't really feel the impact because I was either with this man I was living with--Lynn--or I was with other comrades who were with me all the time in the SMC office or the Women's Day Coalition office. Or if it wasn't comrades, it was just other activists who would take me to the bathroom. I'd be down there at the office, and I didn't have anything organized, but there's always somebody around like Dorothy Dillon, for example, and Dorothy used to take me to the bathroom. We worked in the Women's Day Coalition office together. Whoever was around would help me. If I wanted lunch, they'd push my chair up curbs and we'd go get lunch. By this time I had my motorized chair.

Landes

It sounds like a lot of your needs as a disabled person were met within the context of the Socialist Workers Party, but disability was not a political issue for them or for you. Is that correct?

Cone

That's correct, yes. It wasn't until I got to Berkeley and had my first contact with CIL that I began to perceive it as a movement. I had experiences--like the undercover cops in Chicago were just notorious. There later was a grand jury investigation into the cops, because they were working hand in glove with the right-wing Legion of Justice that was a very racist, violent group that was attacking the different radical organizations. I firmly believe they were involved in the murder of Fred Hampton and Mark Clark. The SWP was under constant harassment by this right-wing group and

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by the cops as well. They all knew me, the undercover cops, and would provoke me. I remember one time--I think Hubert Humphrey was at a hotel when he was running for president--did Hubert Humphrey run for president?

Landes

In 1968. In fact, he was nominated at--

Cone

At that Chicago convention. Boy, my mind is going. Anyway, we were picketing Hubert Humphrey when he came for a campaign visit, and one of the undercover cops--well, plainclothes; he wasn't one of the ones that had infiltrated--I had a sign, something about boycotting grapes--

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Cone

One of the undercover cops says, "Well, Kitty, if you'd eat some grapes, maybe you'd be a little stronger. You're getting a little weaker, aren't you?" Then to the person who was pushing my wheelchair they said, "Why don't you just push her out into the traffic? What good is she, anyway?" This was deliberate provocation to try to get us to respond. The guy who was pushing my chair was a fiery Italian and could have easily--I mean, that's a pretty obnoxious thing to say--had he not been in a disciplined organization [chuckles], he could have just hurled himself at the guy for saying something so obnoxious. I was getting harassed by the cops around the issue of my disability, but I didn't even take it as a disability issue; I just took it as they're just trying to harass us and try to provoke us into doing something violent.

Organizing Lessons from the Chicago Experience

Landes

So Chicago was an important period for the development of your political and organizing skills. Is there anything else that you want to say about that period in Chicago?

Cone

Well, let me think what I learned there. I learned a lot about the left, because I studied a lot. I read a lot about women's history, African-American history, the history of social movements in the United States, because we had classes in the SWP, and summers we would have summer school where we would go two or three nights a week. I learned a lot about social movements. I was already committed to the concept of coalition, but it was absolutely reinforced by the SWP that coalition was very important and that you could get different kinds of people who had different political agendas to be involved around a particular issue. They didn't have to agree on everything else.

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One thing that I learned which I think stood me in good stead at the time of the 504 sit-in was that the SWP does not support the Democratic party, but would only support a working-class candidate; and this is something that the SWP is criticized for very much. One of the things that they maintained was that it was very important for social movements not to get derailed during times of elections and not to be used as a vehicle to support a particular candidate. I absolutely firmly believe that to this day, that it would be wrong, say, for DREDF--where I work now--to endorse Republicans or Democrats. That was a real important lesson to me, and I probably will never change.

The other thing that I learned that I think made me a good organizer is that it's important to develop other people. I feel like I haven't been in a situation where I could really do that for a long time, but I think that that was one of my strengths during the sit-in.

Landes

You're talking now about the sit-in of 1977?

Cone

The 504 sit-in, yes. If you have confidence in people and you try to look at what their strengths are, then give them a task that is commensurate with what they can handle and gradually increase their responsibilities. Then you have a much more effective organization than if you try to do everything yourself.

Landes

You mentioned you moved to Berkeley later. When did you move to Berkeley?

Cone

I moved to Berkeley in the summer of '72.

Landes

Before we get into your move to the East Bay, what did you do in the period between your leaving Chicago and, a couple of years later, arriving in the East Bay?

Political Organizing in Atlanta and Tampa, 1970-1972

Cone

In 1970, I moved with the man that I was living with, Lynn Henderson, to Atlanta. I was immediately assigned into doing anti-war work there and became the coordinator of an organization called the Atlanta Peace Action Coalition. Boy, Atlanta was a wide-open city in those days. The city was changing, leaving its old Southern character behind and becoming more cosmopolitan. There weren't a lot of organized political tendencies fighting each other over tactics and organizations and individuals who were approached were open to talking about the war.

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It was so much fun to organize there, because we got support from the AFL-CIO, and there was the Teamsters and the United Auto Workers, I think--I can't remember what it was called--I think it was called the ALA, Alliance for Labor Action. All of the unions, all of the black churches--I mean, not all of them--a very, very wide representation from unions, the black community, the women's organizations. It was that period when Andy Young was just coming up and--

Landes

So it's about two or three years after Martin Luther King had been assassinated?

Cone

Yes.

Landes

And so there's some new leadership emerging within the black community?

Cone

Yes. I threw myself into organizing, and it was just such a rewarding experience. We'd have a conference to plan what we were going to do. It was a southeastern demonstration, and how the different organizations were going to get buses to come in from other areas representing their constituencies and how we could build it larger. It had been my experience in the past that you'd get representation from a union or you'd get representation from, say, an organization like the NAACP or something, but you wouldn't get their top person. In this case it was their top people who came, and it was extremely rewarding work.

Landes

How long did you stay in Atlanta?

Cone

About a year and a half. The reason I left was because I was sent to Tampa, Florida, at one point to organize this one-month effort to get the SWP on the ballot in Florida. People were sent in from around the country, and we went to Tampa and rented a house and mapped out the city and figured out where we were going to get tens of thousands of signatures. So we had to organize the feeding and the transport and checking the signatures at the end of the day. Actually, it was fun. But during the time I was there, the man I was living with got together with somebody else, and when I got back to Georgia it was obvious to me that something was terribly wrong, and we ended up breaking up. I was just miserable because at meetings he was there and she was there; and it was extremely uncomfortable.

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Sojourn in Washington, D.C., 1972

Cone

I moved to Washington, D.C., and I lived with my cousin, Georgia Springer. This was amazing. Georgia is a very, very smart person. She had lived in Washington all of her life, with the exception of when she went off to college in North Carolina. She and I looked for two solid weeks straight for a place for us to live. I found a letter from my aunt to my father, explaining, "I have never seen two people work so hard on such a fruitless project in my life." New buildings were built with doorways that were so narrow that even if you took the door off you couldn't get a wheelchair through. These are the elevator buildings. The old buildings had stairs getting into the lobbies. It was an absolute impossibility. Finally my uncle pulled some strings and managed to get this real estate agent to rent this house to us, and some comrades built a ramp into the house. I lived in the little study downstairs, and Georgia and these two comrades who were assigned to be my attendants lived upstairs.

Landes

You were doing Socialist Workers Party work there in Washington?

Cone

Yes. I worked in this national abortion coalition office doing press, I think. Then they started bombing North Vietnam, bombing Hanoi really heavily. This was in '72. I went to work in a national office, and there was a group of us who were fairly glib talkers, I guess, because we were assigned to do fundraising, and we did fundraise all day long, late into the night, because there was such a sense of urgency. I remember that we heard that John Lennon was going to give flowers to everybody in the demonstration, and we were so disgusted because we needed that money so badly to build the demonstration [chuckles]. I don't know if that was a true rumor or not.

Anyway, I was very unhappy in Washington. By this time, I had sort of come out of the closet, and I just felt miserable because I knew only one other gay person, Dee Mosbacher, who was my only friend; and then she came out to California for the summer, and there I was. I was really miserable. I think I had sort of a nervous breakdown, just because I was feeling very lonely. My cousin was very good to me, and my aunt was very good to me, but it wasn't the same thing as having friends.

Landes

Were you "out" to them?

Cone

To my family?

Landes

Your cousin and your aunt.

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Cone

To my cousin, yes; but to my aunt, no. I'm still not, although I think she knows. It was just that I had always been the "black sheep" of the family in terms of my politics, and I had lived with this man, and my father was just outraged when I was living with this man, and called up everybody in the family and said, "Can you believe she's living with a man?" One of my first cousins who was about ten years older than I am said, "She can't come in my house again. I can't have her in my house." That was on my father's side.

My aunt--my mother's sister--my faithful aunt went to bat for me and just said, "We like Lynn. He's very good to her. Probably no one's ever going to marry her, and we should be grateful to him for providing her companionship and affection." I was already out there on the outer limits, and they thought I was just out of my mind, and I thought, "I can't add this into the mix." [laughs] In those days, it was very different from how it is now. Being gay was seen as a complete horrid aberration and perversion and all of this sort of stuff. My relatives who were my age all knew about it, but I tried to keep it from the older generation.

Move to Oakland/Berkeley Area, 1972

Landes

So this was a very difficult period for you emotionally in Washington.

Cone

Oh, it was horrible. I still was able--because I was a dependent of a military person--to go to Walter Reed [Army Hospital]. My cousin took me out to Walter Reed to see a psychiatrist, because I said I wanted to see a psychiatrist. This was my idea of therapy. So I went to this military psychiatrist, and he was a Cuban right-winger, a gusano [laughter]. I said to him, "Look. I'm a Socialist, I'm gay, and this is what I'm doing. And I'm very, very unhappy, but those are not the reasons that I'm unhappy." He said, "Okay," and he met with me once or twice and he said--and it was really pretty impressive--"The problem is you're in the wrong city. You ought to move someplace where you have more friends. It's situational." Get out of here, essentially [chuckles].

And he was right. I came out to California because I had friends out here. I said to the guy who was the secretary of the SWP at the time, "I'm miserable, I'm having a nervous breakdown." This was at a conference. He said, "Where would you like to go?" I said, "Someplace where I know people." He said, "Do you want to go back to Georgia?" I said, "Well, Lynn's there." He said, "We

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can move Lynn." I said, "What about California? I have a lot of friends out there." Dorothy Dillon was out here by that time, and some other friends.

Landes

So you're talking about the East Bay?

Cone

Yes. And they said to me, "Move out here, and you'll just love it. The movement is great and the weather is great." So I came out, and I stayed for a while with a comrade.

Landes

When did you move?

Cone

I came out in late August--

Landes

Of 1972.

Cone

Of 1972. They said, "It's beautiful here. It never rains, it's always sunny." I stayed for a month, and it was beautiful and sunny and never rained. I finally made the decision to move, and I bought a house. I moved out here, and it rained nonstop for six months [laughs].

Again I ran into this terrible problem of not being able to find a place to live.

Landes

When you arrived in the East Bay?

Cone

Yes. So I stayed with my friend Paul Montauk. He and other comrades did everything you could do to find a place to live. We read all of the "For Rent" ads in the newspaper. We joined up with Homefinders. We looked and looked and I could not find a place that was accessible. Finally, Paul said, "Why don't you buy a house?" I said, "I don't think I have enough money." He said, "My sister is a real estate agent. She'll find you a place."

I went in and met with Arlene Slaughter--that was his sister--and she was very committed to fighting red-lining and to helping single women. She managed to find me this house in North Oakland that cost $23,500--a three-bedroom, two-bath house. This was the olden days, right? Lynn gave me some money, and I got that house, put a ramp in it, and it was perfect. At that point, that was a lot of money, and not everybody can do that. I still didn't think of it as a civil rights issue, but I was very upset with the fact that there simply was no place that I could find to live. Part of it was that apartments that might have been accessible were being used by students. The other part of it was that the housing stock that was accessible was very minimal.

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Then I was the assistant organizer of the Oakland/Berkeley branch for a number of years.

Landes

The Oakland/Berkeley branch of the Socialist Workers Party?

Cone

Yes. I worked in this office on Telegraph Avenue that had one room downstairs. I got this super wheelchair, an Advanced wheelchair. It was the best wheelchair they ever made, I'm convinced of it. I think the guy who designed it was a quad and he may have died. Anyway, so I had this super chugger wheelchair that I loved, and I guess I must have lived about a mile away from the branch, straight down Telegraph Avenue. I would leave my chair at the bottom of the stairs--I had a pushchair there--and the organizer, who was a very strong guy, would transfer me into my pushchair and haul me up this little flight of stairs into the regular branch, and that's how I dealt with that. I remember that I was very upset that there were no curb ramps on Telegraph Avenue. As I said, it rained the whole time, so I would drive my chair home in the street, and a comrade would follow me home in the car to make sure I didn't get run over.

Sometime in that period I was asked to go on the Jerry Lewis Telethon, and I didn't have any feelings about the telethon pro or con at that time, but I thought, "The Muscular Dystrophy Association has helped me pay for this chair so I'll do it." So I got on the TV, and they said--

Landes

At a local station?

Cone

Yes. They said, "This is Kitty Cone, and we bought her this wheelchair. Kitty, do you have anything to say?" I said, "I love my wheelchair. It's really strong, and it'll go anywhere. But the problem is there are no curb ramps [laughs] from where I work to where I live. So I have this great chair, and even though it's so wonderful, I need curb ramps. We need curb ramps in Oakland." I was off and running about curb ramps.

Landes

So you started doing political organizing on disability issues on the Jerry Lewis Telethon.

Cone

Yes. I don't think I realized that I was--I don't even think I was talking about the government doing it, but I guess I understood that it was government funds.

Anyway, I did a variety of activities. One of the things that I did just before I got really involved in disability politics was that I became the coordinator of the Committee for Democratic Election Laws, which was trying to open up the California ballot--I think the beginning of 1974. We had five

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plaintiff parties. I think it was La Raza Unida party, the Libertarian party--talk about a broad range in coalition--I think the Socialist Workers Party, and then two other parties. And Vince Hallinan was our attorney. He was doing it out of the kindness of his heart, but he was not writing the briefs. There were three of us who were putting together the legal documents--we weren't lawyers, so we would get all the arguments and look up things in the law books, and then Vince would shape it up and file it.

Discovering the Center for Independent Living, 1974

Cone

I was doing that work about the time of the election; Jerry Brown was elected in 1974. I had this incident where my wheelchair kept having problems. It kept breaking down, and I had bought it through Thrifty Rents. The guy at Thrifty Rents said, "You know, you shouldn't have to wait while we send this piece back to the factory every time," because then I wouldn't be able to use my wheelchair; I'd have to use the pushchair. He said, "Why don't you call up the Center for Independent Living?"

To make a long story short, I did. I had this problem when I was stuck in the street. So I called Gary Rowan, and Gary came down and jacked my chair up and replaced the part. I thought I had gone to heaven. I thought, "This is the most wonderful thing. This is the way it ought to be." Then I started going into CIL for wheelchair repair. They had a wonderful wheelchair repair shop in those days.

Landes

Who do you remember from the wheelchair shop?

Cone

They hired some more people after I started working at CIL, but Gary Rowan, Earl Jacobson, and Tom Fussy. They were really, really good repair people. When I was in there, I saw that there were people who had attendants. At this time, I was still having my personal assistance care provided by comrades who were assigned--they weren't forced into it, but they were told, "You can have a place to live, and then will you help Kitty get dressed, take a bath, drive her, cook for her, wash the dishes, clean up the house, et cetera." The people I lived with were always very, very nice people. But I was very conscious of accommodating myself to their schedules and their needs. If they were not available to give me a bath in the morning then I wouldn't take one even though I always liked to take a bath in the morning.

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IV Political Organizing at the Center for Independent Living

Cone

I started doing volunteer work at CIL because I was so appreciative of the wheelchair repair shop. That's how I got in touch with the issue of attendant care. I was helping Janice Krones schedule rides in this little red Volkswagen van that had been donated, and that was the CIL transportation system at that time. One little old VW van [laughs].

Landes

You and Janice Krones were organizing transportation?

Cone

No. Janice was organizing the schedules, and I just helped her as a volunteer. So I decided, number one, that I wanted to be involved with this organization, because I thought they were doing good services. Number two, I wanted to earn money--the SWP was paying me like forty-five dollars a week or something, and then I had trust funds from my family, which were not enough to pay for attendant care. I wanted a paying job at CIL. I went to Ed Roberts, who was the executive director at that time, and said, "I really am impressed with your organization, and I would like to work here. Do you think that you have a place for me?" He said, "What do you like to do?" I said, "The only thing I know how to do is political organizing." He said, "Well, then you can be a political organizer. Go work with Hale Zukas." And that was about it.

Working with Hale Zukas

Cone

I reported in for work, and Hale was at that time handling everything for CIL from benefits, SSI, cost of living increases, the Homemaker Chore program--which was attendant care or personal assistance services; that's what it was called in those days--architectural barriers, mobility barriers, anything like that. Hale dealt with all of it. My job in the beginning was to interpret for Hale, and the first assignment I was given was to do

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his timesheets for about the past six months, and it was tortuous because I couldn't understand him. We finally managed to get them all together, and then I lost them, and Hale was furious. I'll never forget, because Hale is just the most good-natured person in the world. I think Hale soon realized that having me do timesheets was not a reasonable use of my time. He would take me to meetings with him, and I would translate for him, but I also was learning the issues and then I began to speak on the issues. So I was involved in everything from Homemaker Chore to SSI to AC Transit to BART. Whatever Hale was doing, I started doing. And then I became sort of a spokesperson in my own right.

Organizing for Curb Ramps in Oakland

Cone

As I mentioned, I was very upset about the curb issue in Oakland so the first thing that I did on my own was to try to get Oakland to put in curb ramps. I started, I think, by going to the Public Works Department and getting nowhere. Public Works departments are notorious cement-builders--you know, they're not social activist types, generally [laughs]. So I got nowhere.

Then I organized this thing called the Committee for an Accessible Oakland, utilizing my past coalition approach. We got Easter Seals and CIL and CAPH--which was the--what was it?

Landes

The California Association of Physically Handicapped.

Cone

United Cerebral Palsy--I didn't even know what the organizations were--I just sat down with Hale and said, "Who can I ask to this?" So we printed up a letterhead and then developed strategy. Since I was obviously a paid organizer and willing to do the work, they chose me to be the coordinator or something.

At that time, community development money was just coming into Oakland, so I would go around to the different community development neighborhood committees and speak about the need for curb ramps and why it was so important and how disabled people couldn't be expected to participate in society if they couldn't get off the curb once they were trying to go out in society. Then we decided that downtown was the most important, so I started attending the downtown Chinatown Community Development Committee meetings, and was elected to the board.

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Cone

The board was a very collaborative group of people, and when it came time to vote on priorities, I think the number one priority was curb ramps in downtown Oakland. I can't remember how the process worked--I think the whole committee made recommendations and then we went to the city council and whatever. They ended up voting $100,000 the first year, and then I started meeting with the Public Works Department because we were trying to address concerns of interest to blind people.

Actually CIL had led the way on this, and I think that we actually had made a big mistake. There was something called the Disabled and Blind Action Committee that was a ghost organization, just a paper organization, that we would pull into action when we needed to make it look like there was another organization involved in something. Dick Santos and Hale [Zukas] were the prime movers. Dick Santos is a blind guy.

When CIL got the City of Berkeley--the City of Berkeley was involved in an ongoing ramping program that had been spearheaded by Hale, I believe.

Landes

Berkeley had started earlier?

Cone

Yes, they had. I mean, I can remember seeing Hale before I got involved at city council meetings--earlier, like in '72 or '73. Anyway, they had made the decision that it was not good to have the curb ramps on the corners of the curbs; it was better to have them way off to the side because they thought that blind people would be walking off the curbs because their canes would not detect even textures or lines in the curb ramp when they were walking off the sidewalk and into traffic.

You'll remember that, for example, all the curb ramps on San Pablo Avenue, some of them were just plain downright dangerous--like at San Pablo and University. You'd go around the corner to go down the curb ramp, and there would just be one curb ramp per corner. So say you were trying to cross San Pablo. You'd go off the corner on University, and you'd be right in the path of traffic that was turning right off of San Pablo. I think that it was not very good, but I bought into it because that was sort of "the line." Being a good "democratic centralist," when Hale told me, I said, "Okay." So we had a lot of arguments with the Public Works Committee which fortunately I think they didn't listen to, because they did go ahead and put them into the corners.

Landes

In Oakland.

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Cone

Yes. And I don't think it's proven to be any sort of danger to blind people. I've never heard anything about it. I've maintained that stance for a while.

Anyway, we had some problems with the Public Works Department because they said some of the curb ramps were going to be very, very costly on Broadway because there were basements underneath and that they would have to do all this reinforcement of the street around where the curb ramps were, which I think wasn't exactly accurate. So I had to learn about things that I had never known anything about: cement and angles and that sort of stuff. And I tended to rely on Hale a great deal for that sort of thing.

The Homemaker Chore Funding Issue, Fall 1975

Cone

So that was very victorious. And then immediately on the heels of that, I think in early fall of '75--there tended to be this problem that every--I don't know if it was every two years or every year--the money allocated for the Homemaker Chore program would run out. This is a little bit complex, but it was funded through Title XX money, which is social service money, and it came, I believe, 75 percent from the federal government and 25 percent from the state government.

Landes

So that was the money that was paying for homemaker chores and attendant care and personal assistants?

Cone

That's what the personal assistance services was called--Homemaker Chore--and it is now called In-Home Supportive Services. It is a very, very important program, and California clearly had the vanguard program in the country. It served many, many more people than any other state's program, and it did not follow the medical model that required you to have people from nursing agencies. People were allowed to choose their own attendants in many counties using what's called the independent provider mode; you interview and hire your own attendant if you're receiving a lot of personal care, so that you're not stuck with somebody that you don't get along with that comes from an agency, for example.

Landes

Had that independent provider model been established before you arrived in California?

Cone

Yes.

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Landes

Do you know secondhand how that model was established in California? What is its history?

Cone

Well, I do know that it varied from county to county. There were three different modes of providing attendants. In Alameda County --and I'm sure a lot of it had to do with the fact that there was such a vocal group of activists in Alameda County--they had just the independent provider mode. In some counties they had what's called the contract mode, where they'd contract with some big company like Upjohn or Eli Lilly or whoever runs those agencies. There were some advantages: the workers, I think, got more benefits and job security, but people didn't have control over who came into their home. They also got a lot less hours because there was a cap on the amount of money you could get.

So if the agency wasn't making a profit off of it, the person with the disability or the elderly person would get many more hours because in those days--God knows what it was--$3.75 an hour versus $10 an hour. You'd get three times as much service. And then in some counties, like in Yolo County, I think the service was provided through the county. There were county workers who did the service.

The independent living activists had real problems with the contract mode and the county provider mode unless you had the alternative of the independent provider mode as well. I can remember being in meetings with Mario Obledo, who was the--what the heck was he? Was he the head of DSS [Department of Social Services]? And the people who ran the Homemaker Chore program, and Ralph Abascal from CRLA [California Rural Legal Assistance], and Phil Neumark from CRLA, and Greg Sanders and Hale and I from CIL, talked quite frankly about the problem of compensation for attendants. It was very difficult because attendants were considered state workers; they didn't get any benefits. They were almost working below the minimum wage if you figured how many hours people really needed. It was an issue that we always tiptoed around because we just didn't know what to do about it. If attendants were given benefits and paid vacations--or even unpaid vacation--and a health plan, then the ramifications were so enormous in terms of the cost that nobody would even actually talk about it. It was just something that you talked around.

Landes

So you were involved in this issue around 1974 and 1975?

Cone

Yes.

Landes

How did you become involved with the issue of homemaker chores?

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Cone

I just did whatever political issue came to the fore. I worked with Hale on it. Hale and I were CIL's organizing political unit. Then later Greg Sanders got sucked into it as well. And when Judy came back from Washington she was involved. Our unit was called the Community Affairs Department.

Landes

Is that Judy Heumann?

Cone

Yes. The Community Affairs Department consisted of--I believe it was Hale and me and I think Eric Dibner at one point and Jerry Wolf. But then they went off and did access--more actual construction and helping to construct ramps. So it was mostly Hale and I--it was Hale and I who did it. He was the director, and I was the assistant director, and that was the department.

I think in the summer or early fall of '75 the money--it was a closed-end program; you only got so much from the federal government. You got 75 percent of the projected costs for the whole year, and then the state made up the other 25 percent. But once the federal part ran out, it all fell upon the state and the counties, and the program would cut back in different counties when the money ran out. They would start cutting people back on their attendant care services.

Landes

At the end of the fiscal year.

Cone

Whenever the money ran out. There would have to be an emergency appropriation, and I remember the first demonstration that I was involved in organizing for CIL was a demonstration sort of directed against [Governor Edmund G. Brown, Jr.] Jerry Brown, because the money was running out and we wanted to get an emergency appropriation.

Landes

So you suspect this may have been in the late spring of '75? End of the fiscal year?

Cone

It doesn't make sense. Yes, it might have been then. I guess that that must have been when it was.

Landes

And what was the demonstration organized around?

Cone

It was around getting the funding back in the program, that the state needed to make up the short fall because people were getting cut off. There was a short rally, and I remember that I was sitting up on the top of some steps of the Capitol in Sacramento. There was this picket line with Jerry Wolf and Mary Lou Breslin and all these people from the Disabled Students Program and CIL and people in the community. At that time it seemed like a lot of people had vans, and we organized transportation and everybody

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would take several extra wheelchairs--you know, extra people who used wheelchairs--in their vans. We got this big group of people up to Sacramento, and I can remember giving a speech on the steps of the Capitol; I knew the issue real well because I had been organizing. I don't remember how, but they did get the money. There was a lot of press, I think there was a lot of attention drawn to the matter. And CRLA might have been doing something with lawsuits as well, but I don't remember that they were in that instance.

Comparing Berkeley with the University of Illinois

Landes

Could we go back a bit--unless you wanted to talk more about this specific issue. I'd like to go back to your initial impressions of CIL and the disabled community in Berkeley. You had been at the University of Illinois Rehabilitation Center, which had been an important institution for disabled people in the early sixties. Now you're coming to the East Bay--Alameda County, Berkeley--in 1972 and '73, which were the formative years of the independent living movement in Berkeley. What were your impressions? How did you feel about this contrast and approach to issues of disability?

Cone

Well, by the time I had left U of I, I had felt totally controlled and manipulated by the Rehabilitation Center. It was run by able-bodied people for people with disabilities. CIL was run by people with disabilities for people with disabilities because of needs that had been identified by people with disabilities.

Landes

How did you feel when you first saw that?

Cone

I loved it from the minute I got in there. I was very accustomed to being around other people in wheelchairs; but, first of all, I felt like I had a whole new thing to learn. There were all of these people; I liked everybody a lot and I felt like they all had a lot to teach me.

Landes

For what reason?

Cone

Because they really had been living what I considered independently, in a way that I hadn't, because I had had this built-in support system through the SWP. I was definitely out there in the world doing my thing and making changes, in my opinion; but I didn't have full control over when I was going to take a bath, when I was going to do whatever. And here were these people hiring people and completely choosing who the people were

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who were going to be assisting them and really, really managing their own lives.

Landes

Who were some of the first people that you remember that you saw at CIL? You mentioned Ed--

Cone

Yes. Let me just say a little bit more about the differences because that got me thinking about the differences between U of I and CIL.

The other thing was that it was a coalition. It ultimately developed into a broader thing, but it was definitely people in wheelchairs, people who walked, who used canes, crutches, and people who were blind or vision impaired--so it was not just all people in wheelchairs. And there were people who were severely disabled like Ed Roberts or Greg Sanders, not just people who could push their own wheelchairs. And there were people who depended on personal assistant services, not people who would spend an hour trying to sit up in bed because they were being watched over by the Rehab Center. The big difference of course was that people thought of it as a cause--not just a service. People really did think of it as a cause, and I think some of the friendships that got forged in those early days, even though people were very, very different, had a great deal of meaning because it was a cause.

Remembering People at CIL, mid-1970s

Landes

Who were some of the people that you remember first?

Cone

Many of them have passed away. Ed Roberts, of course, was the executive director, and Ed was so charismatic and the kind of person who could inspire people and draw people around him, and just by sheer force of personality could impress anyone from bigwigs to peers to whatever. He wasn't real focused--I mean, he was focused on the ultimate goal, but he surrounded himself with people who I think were very competent. I can't remember if she came before or after I started working at CIL, but Joan Leon--who now is at the World Institute on Disability--came to work at CIL in those days. Joan's daughter had cancer at the time--I think leukemia.

Landes

Joan's daughter had leukemia?

Cone

Yes. Joan was an incredible grant writer, an incredible sparkling personality who could just wow people and bring them in and say,

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This is the most exciting group of people. Then she became the grant writer or person who was Ed's right-hand man, so to speak.

I'm sure I'm going to leave people out. Greg Sanders was doing the benefits counseling--Greg was a pretty high-level quad. At that time he was helping people not lose their social security benefits if they wanted to work. Or if they wanted to get Homemaker Chore money, help them go through the process. Or if they had been denied some benefit, help them do an appeal. In his early work, he developed such a body of experience that it has had important ramifications around the country, I think. Ultimately, Greg went on to become exclusively involved in the policy aspect of social security and SSI and the disincentives involved in the benefits system to people with disabilities going out and getting a job--like losing their medical coverage or losing their attendant care. He worked on policy issues at the local, state, and federal level.

And then there was Nancy DiAngelo, who had muscular dystrophy. Who was the other person who worked with Nancy in attendant referral? Alice McKennan. Nancy was a very jolly, fun-loving, partying, poker-playing type of person who was running attendant referral. People were into being attendants in those days. It's like if you worked in a rock band you'd get a job as an attendant, and you'd find really responsible people who became friends with the person that they worked with. It was a different era than it is now. It was considered a--not an alternative lifestyle--but a very good kind of thing to be doing.

Landes

The job had some status that it doesn't today?

Cone

Yes, exactly. I believe Phil Chavez might have also been working at that time in attendant referral. Then the person who did the billing for the wheelchair repair was Lynn Tijerina, who later went back to her maiden name, Lynn Kidder. She stayed at CIL for years. Lynn was a powerful influence in my life. She just died a few months ago of breast cancer. At the time she died she was the speechwriter and article writer for [UC Berkeley] Chancellor [Chang-Lin] Tien at the university.

Then Mary Lester came to work. Mary Lester runs the--I can't remember. She runs or is something high up in the--Disabled Children's Computer Group? I'm not exactly sure. I just fell in love with Mary Lester; she had the greatest sense of humor. Really smart. All of the people who were there were really, really smart people. I've got to say that about Ed; he found really good people. Eric Dibner, who was doing architectural barrier stuff. Linda Perotti. Bill McGregor was the accountant. Hal Kirschbaum. Don Galloway was running blind services. Susanne

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Scott. A lot of people with disabilities, and the people who didn't have disabilities were just outstanding people.

I'm sure I'm forgetting people, but my overwhelming--oh, Janice Krones was running the transportation department. Janet McEwen-Brown, a blind woman, who edited The Independent, which was the--now there's a concept: the blind woman was editing The Independent--I'm pretty sure. Oh, and Ken Okuna, who was the photographer for The Independent.

CIL's Loose Structure

Cone

We all did a lot of crossover stuff; I remember going and helping do fundraising or coming in to meet with people. The staff was so small that we could all fit into this fairly small conference room. Oh, God, when we had staff meetings! I had come from an organization that was so structured and had these very, very structured meetings--which I really prefer--where you have a proposed agenda. People would give reports on their work, and then you'd discuss it and decide where you were going, and then you'd vote to carry it out or whatever. Ed would call these staff meetings--oh, and Phil Draper. Phil Draper was the assistant director. And Phil Draper had been, I think, a sort of motorcycle guy before he broke his neck.

So here you had this bunch of people, none of whom I think necessarily would have been running the services and political organization had they not been thrown together by virtue of our disabilities. Oh, those meetings were just horrible. Ed would just get up and start talking, and he would just roam all over. I would always come to those meetings with a little report on what we were doing, and half the time I never got to give my reports [laughs]. So I would just butt in and say, We're having a demonstration. Will people please come? See me later [laughs].

Landes

Did you feel frustrated by the lack of structure in these staff meetings?

Cone

I did, and I think that some of the things that happened to CIL later on down the line were a function of the fact--you know, CIL, organizationally, went through some pretty rocky times, which I think happened to a lot of nonprofit organizations that started out in the late sixties or early seventies and then maybe got infusions of federal funds--like Legal Services Corporation funds --different kinds of organizations that grew really rapidly. They went from being movements--I'm jumping over time here.

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I think that CIL grew very, very fast over a period of a few years and got a lot of money; and you had this group of people, as I say, who--I mean, I don't think Phil Draper would have ever conceived of being a director of a big organization. Some of the people had gone to segregated schools or had never even gone to school until they were in fourth grade or something because of their disability. We didn't necessarily have the organizational skills to develop personnel policies much less run a whole big organization. I don't think I'm explaining it very well, but I think we grew so fast--

Landes

That the lack of structure created some real problems down the line?

Cone

Yes. Lack of experience too. But on the other hand, we also went from being a movement that did provide services--and really was a movement--to being very big and hiring people who were not necessarily coming to work there because they wanted to be involved in the movement but because they needed a job. So sometime in the eighties CIL was ripped by internal contradictions, I guess you could say. Anyway, in those early days it was a most rewarding experience to work there. We really were having a huge impact, I think. There wasn't any other independent living center in the country.

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Why the Independent Living Movement Took Hold in Berkeley

Landes

Kitty, we've been talking about the Center for Independent Living and the first couple of years that you were working there in the mid-seventies. Kitty, why do you think that the independent living movement took hold in Berkeley?

Cone

I've been asked this question many times. I think there's a variety of reasons and that they all sort of came together. One of them is that the weather is just good here; it's easy for people, particularly people with mobility problems, to live here because they don't have to deal with real cold and they don't have to deal with snow and ice and that sort of thing.

I definitely think that the early leaders of the movement who were at Cowell Hospital at Cal--people like Ed Roberts and John Hessler and the group that was called the Rolling Quads up at Cowell--were very influenced by the political radicalism of the Berkeley campus. There was an example of other people using mass

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action or political means to win gains. I think that they were very influenced by that.

I also think that over time there were better social services in California for people with disabilities. I'm speaking a lot about people with severe disabilities, particularly people in wheelchairs. There was a higher SSI payment than in other states. There was a much better attendant care program than anywhere else in the country. And, this is important to talk about later, the attendant care program gave people a lot more independence and authority over their own attendant care than ones that were based on the medical model. Besides, it was a lot easier to qualify, and you could hire and fire your own attendant, and you didn't have to have a lot of medical people around. So there were better social services and people were able to live in the community independently.

So then when CIL first got started, it was offering services that weren't provided by the traditional agencies and that were necessary to complement the existing social services, like attendant referral or really efficient wheelchair repair or benefits counseling. Those kinds of direct services just attracted more and more people to Berkeley. The people who tended to come were the people who really had a desire to be independent, and they came from all over the country because they wanted to get out of living with their family or living in the nursing home or something. Word got around and so more people came to Berkeley; so there were more people to become involved in activism.

Also, Berkeley is a really easy community to traverse, unless you're up in the hills, but there's not really anything in the hills except fancy houses. It's small; you can travel around Berkeley in a wheelchair very easily, and the campus, in spite of the fact that it's got an awful lot of students, is fairly small compared to, say, the University of Illinois, which just ranges over fields.

Also, the fact that BART [Bay Area Rapid Transit] was accessible. And then you had CIL offering paratransit services so people could get around, and that made it a lot easier to organize. So a combination of the fact that people could travel; they could come to meetings, they could form friendships and congregate. Word got around fast. Also, CIL's client base also became the troops of the movement at a certain point.

So when there was an issue, like when the federal portion of the Homemaker Chore money had run out and the states and counties were not willing to pay the whole amount--. The federal money and the state money had both run out, and the counties were beginning

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to cut people off because they didn't want to pay the whole 100 percent for people to have attendant care money. People were very threatened, and CIL always took the leadership on that issue because they could say to clients, "Your attendant care money is going to run out. We're going to organize a demonstration. We will provide transportation, we'll help you get to Sacramento." Then a lot of people had gotten vans from the Department of Rehabilitation. They were in the rehabilitation process, and everybody knew each other, and there were just lists of people who had vans.

Landes

Now you're talking mid- or early seventies?

Cone

Yes, early seventies. This demonstration in '75 around--

Landes

Which we talked about earlier.

Cone

Yes. People could get to CIL--they could ride BART to CIL. They had vans that they had gotten from Rehab. And they had attendants who were their friends and part of the movement as well. So we would just organize caravans. Nowadays people who get vans from Rehab--things are very different--nowadays people are working regular jobs. Young people [laughs] get rehabilitated and go out in the world and take advantage of all the gains that we've made; that's my impression. They're not around and available to take their van off to demonstrate in Sacramento, and the will doesn't seem to be there either.

Landes

And they probably didn't get their vans until after they got their jobs, whereas you're saying that previously people could get vans before they had jobs.

Cone

As part of the rehabilitation process, yes.

California's Attendant Care Program

Landes

That raises a question for me. You spoke about a lot of people having vans, which suggests that the Department of Rehabilitation was providing them. Also, you mentioned that California's attendant care program was better than other states. Let's take the attendant care issue first. Do you know why the California program was better? What led to the changes in the California program?

Cone

I can speak about it from 1974 on, but it started before that. And there were a series of lawsuits by the California Rural Legal

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Assistance, which were involved with shaping the nature of the program. But one of the things about the California program, which in '74-'75 was called the Homemaker Chore Program and later became In-Home Supportive Services, was that it was funded through federal Title XX money. That money is social services money; it's not medical money, and it goes through the Department of Social Services. There was a financial problem for the state doing it that way because I believe it was 75 percent federally funded and 25 percent state and county funded. But it was a closed-ended program, so the federal government would give x amount of dollars based on clients the year before or some such formula. Then the state and counties would give the 25 percent to match.

And I think almost every year the federal money ran out. Other states funded their programs--and no state had a program as comprehensive as the California program because they were medical --through Medicaid funds, Title XIX funds, which are open-ended funds; it's 50 percent federal government, 50 percent state, but whatever is being spent is matched by the federal government. So I know that periodically there were discussions about trying to transfer the program onto Title XIX funding, and the consumers always were very opposed to it because it entails a great deal--at least it was our impression, and I think it's accurate--that it entails a great deal more involvement from medical professionals, nurses and doctors and so on.

In the Homemaker Chore Program, people could qualify for it who represented a whole spectrum of disabilities. It served elderly people who are frail, for example, and could not do their grocery shopping or could not clean their house because they were too frail. Obviously, because they were getting someone to do their grocery shopping, they were getting better nourishment. Or because someone was cleaning their house they were healthier than if they weren't. It really made a great deal more sense than to just serve people who had serious medical conditions, although the program always has served people who are very, very severely disabled.

One problem with the program has always been that people who require a great deal of care--say twenty-four-hour care--there has never really been enough money to provide that because there was always a capped amount that a person could receive per month. Really I think the state knew and the social workers who were dealing with clients on the local level one-to-one knew when they had somebody--the cap on the amount that you could receive in those days was probably about $800 a month. And I'm sure everybody knew that you couldn't really hire people for twenty-four-hour care for that amount, and people would just cobble together systems utilizing their spouses, their friends, their

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whatever, to supplement the amount that they were getting in order to have that care.

That leads me into another issue, which is almost the untouchable issue, and that is that the program--during the time that I was dealing with it--was growing very, very rapidly. It's probably 150,000--I don't know; it's very big. Many people are on the system. And I haven't dealt with it in decades, so I'm not speaking really knowledgeably about what is happening today. The unspoken issue was the rights of the attendants or the personal assistants. It affects the quality of service that people get--much more today than it did in the olden days when you could buy more for less amount of money, because the amount of pay has gone up very, very slowly. I mean, it's hooked to minimum wage. Attendants in the independent provider mode, at least, do not get any benefits--they get social security and FICA and that is taken out, but they don't get any paid vacations, they don't get any sick leave, they're earning minimum wage. Well, now the minimum wage has just gone up, but for $4.25 an hour people just couldn't live.

I can remember sitting at meetings with Mario Obledo, who I think was the head of the Department of Social Services, and Hale and Ralph Abascal, where we would skirt around this issue and never really deal with it because the people with disabilities knew that if we pushed for better benefits and conditions for the workers it was going to send the cost of the program right out the door. For a long time--and this is, I think, beginning to be addressed today; I think there's a real dialogue going on between the unions and--the union that I think represents people today is SEIU [Service Employees International Union]. In those days, it was an organization called California Homemakers Association. It was very much a small, left-wing kind of organization that was made up of--as I recall--a lot of people who were working in the county provider mode, who worked for the county. I think people who worked for contractors like--well, the big drug companies and the companies that--

Landes

Such as Upjohn, which you had mentioned in the last interview.

Cone

Right. I think those workers did get more benefits, but people from CIL at least, most of the people that we represented did not want contract employees because they would have this very regular schedule that didn't allow you to make any sort of changes in your--the employee would go serve one person from ten to twelve [o'clock] and another person from twelve to two. And although most attendants who were hired independently by a person in a wheelchair had a schedule like that, they were able to be more

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flexible. And the person didn't get a choice of who worked for them oftentimes.

The other thing is that the benefits were taken out, so you got less hours. If a contracting agency was paying--

Landes

Yes, we've talked about this in the last interview. More what I was interested in today was what made the California program different. Apparently a lot of this happened prior to your involvement.

Cone

I think there was very good, positive political pressure exerted at the right times. Sometime in the sixties, the Aid to the Totally Disabled, a federal program supplemented by the state, was ending. It covered both a basic stipend to live on, like SSI, which would replace it, and attendant care. So the legislature and the governor, Ronald Reagan, were attempting to develop a new program for attendant care. People with disabilities worked very hard to shape the program, the Homemaker Chore Program, and then Reagan tried to axe it. Ralph Abascal filed a lawsuit and the program was implemented against his wishes.

Ralph Abascal and Phil Neumark from CRLA were the two lawyers, but Ralph was just a strategic genius who could figure out when to do a lawsuit and when to threaten to do a lawsuit. I think Hale Zukas is a good person--.

Landes

You were Hale's assistant at CIL, correct?

Cone

Yes.

Hale Zukas, "An Unsung Hero": Public Transportation Issues

Landes

What impact did Hale have on you when you first met him and then began working with him?

Cone

Hale is one of those unsung heroes, I think, in some respects because of his disability, because it's hard for him to communicate his immense wealth of knowledge. My job was to translate for Hale and to accompany him and speak for him. When you work with Hale you get to know what his thoughts are and you get to know his material. Hale can start a thought, and you can help him finish it after you've been working together long enough. Hale was working on a variety of issues: he was working on architectural barriers, he was working on transportation issues, and he was working on health and welfare issues. So I would

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travel to Sacramento with Hale and whether we were lobbying or just meeting with agency officials or developing testimony or whatever, I learned a great deal. Hale knew more than anybody about all of those issues. As a result of working with him, I learned them as well.

Hale was just a genius on transportation. I remember once going to an APTA [American Public Transit Association] conference with him. I believe it was in 1979. And we were going around to the different open houses that were being hosted by different vendors there. And we went to one that was General Electric, I think. Hale got into this technical discussion with somebody who at first probably wasn't going to pay any attention to him. Then they got totally entranced by him because they got into this discussion about what kind of glass there is in the Amtrak train windows and why that particular type, the history of that type of glass and why they chose to use that [laughs]. I was trying to translate, and I didn't have a clue what the next word that was coming would be. Hale just loves vehicles [chuckles]. I can remember one time Hale and I were writing a report that had a deadline, and he dragged me--this was years later--and Joan Leon down to sit on the railroad tracks down by Second Street or something.

Landes

In Berkeley?

Cone

Yes, waiting for the steam engine to go by. And there were a couple of other train buffs out there. Joan and I were really pissed at Hale [laughs] because we had this report to get out. Joan and I said, "We're going to leave you here, Hale. You're just going to have to do this by yourself. We're sorry, we're not going to be here." He said, "Okay." And we found some other train fanatic who said he would stay there with Hale and assist if there were a need for any assistance. The steam train was only going to go through once in his lifetime, and he was going to be there for it. He loves studying transportation systems, particularly public transportation.

BART Handicapped Task Force

Cone

I remember--I think it was in 1974, when I first started working at CIL. I was taking the CIL paratransit vehicle, which was this old Volkswagen van that had been donated to CIL. Hale said, "Why don't you ride the BART? Your home isn't that far from the BART." I said, "I'm scared of the BART; I'm scared I'm going to fall off onto the tracks." [laughs] So Hale took me and gave me mobility

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lessons on the BART. I thought he had ulterior motives, because I think at this time Hale was on the BART Handicapped Task Force and he was writing this document called "Why Disabled People Aren't Riding BART." I thought, Why is he writing this? Later I realized how important it is to show ridership statistics so that when you're advocating for accessible public transportation you can make the case that accessible mainline transit is much more cost effective and more user friendly than paratransit, where you have to pay for every single ride and the costs are greater.

Hale totally understood this issue and I'm thinking, Why is he writing "Why Disabled People Aren't Riding BART." He was collecting statistics. I'm sure that that was a very important document because he was talking about how there were not feeder services that people in wheelchairs could utilize to get to and from the BART stations and that historically people in wheelchairs, for example, had not had experience riding public transportation, so there was a fear factor like there was with me; they were not familiar with how to use or even just read the timetables and things like that. It all sounds ridiculous at this point, but it was brand new. The ridership was pretty low then; now you just see wheelchairs on BART all the time.

Landes

So Hale was instrumental in getting you interested in transportation issues.

Cone

Oh, absolutely. That's how I started dealing with transportation issues--going with Hale to BART Handicapped Task Force meetings and--

Landes

When would that have been?

Cone

I think that was in '74.

Landes

And where were those meetings held?

Cone

They were held in the BART offices.

Landes

In downtown Oakland?

Cone

Yes.

Landes

What issues came up in those meetings?

Cone

I remember one issue was that seniors were going to get discount cards where they would pay 10 percent of the cost of the ticket and disabled people were going to pay 25 percent of the cost of the ticket. Hale brought in statistics to show that disabled people as a group were more impoverished than seniors and that

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disabled people should have the same discount as seniors. But everything came up from--

Landes

Excuse me--do you know where he got this information? Did he do his own surveys? Did he rely on other surveys?

Cone

I'm sure he utilized other surveys. He probably got information from social security. I don't know where he got his statistics.

Landes

So you're telling me that Hale knew where tremendous amounts of information was available and then knew how to use it?

Cone

Absolutely.

Landes

To advocate for disabled people.

Cone

Yes. Hale collaborated extensively with Dennis Cannon, who I would say is like the transportation guru of wheelchair users. Dennis at that time was in southern California. Dennis now, I think, has some position with the Architectural and Transportation Barriers Compliance Board. Dennis did a great deal of research around comparative costs of paratransit versus being able to use the regular transit services. He did a lot of work trying to impact the Southern California Rapid Transit District, but he wrote a number of documents which were very influential nationally in the movement. And Hale and Dennis were very good friends and close collaborators, so I became friends with Dennis and relied on Dennis. We called Dennis a lot for information and assistance and there was a great relationship that existed there. I'm sure Hale worked with Dennis on that.

Pressuring AC Transit

Landes

In addition to your work with Hale on BART issues, what other transportation issues were you involved in very early on--1974, 1975?

Cone

I'm trying to remember when CIL got involved in trying to pressure AC [Alameda-Contra Costa] Transit. There was a state law that had been passed--I don't remember when it was passed, but it said when there was more than one manufacturer of accessible equipment--and that meant lifts--that transit authorities in the state who utilize state funds were required to purchase that equipment. Nobody was doing it. At that time, I think the only transit authority in the country that had bought accessible buses was the St. Louis--for some reason I'm thinking it's called Tri-City or

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Tri-State or whatever, but it was the St. Louis Transit Authority. They started off with great promise and then ran into all kinds of problems because nobody else was buying the equipment. It's a problem when you've just got a few transit authorities who are using the equipment because there's no real R&D, and it's hard to get replacement parts and there's no incentive to develop collaborative relationships about how to train your drivers and what the best maintenance program is and all this kind of stuff. CIL, I think, initiated this effort to impact AC Transit, and we went to a lot of AC Transit board meetings.

##

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Cone

The general manager of AC Transit at that time was renowned throughout the country for being a really good general manager.

Landes

Who was that?

[note: tape begins skipping portions of the interview]

Cone

Al Bingham. Boy, you know, I hated that man so badly. It was really weird. He was really, really just a bus driver's and transit person's dream of a general manager; the system ran very smoothly and was nationally respected. The story goes, he said, "I'll drop dead before I'll put wheelchair lifts on my buses." Then he had a heart attack and died, and we felt guilty because we all spoke so evilly of him and we were so mad at him, and then when he died it was like, Oh, my goodness, what have we done?

There was such significant resistance that Alameda County Legal Aid assigned two lawyers to work on the issue, one of whom was Evelyn Frank, who died a couple of years ago. Evelyn was an extremely experienced and competent litigator; she just was beloved in legal aid circles around the country for her brilliance. I consider it such a great privilege to have been able to work with her. We used to sit in the AC Transit meetings and take notes. Evelyn was always collecting information for the suit. Anyway, the suit got initiated, and I think this is like mid-seventies, like '76 perhaps. There was a variety of plaintiffs. I think the California Association of Physically Handicapped was involved or provided leadership.

Hale was the CIL person. Kathleen Lankowski was a brilliant woman from UCP [United Cerebral Palsy]. We held periodic meetings to discuss strategy and public relations and so on. We won. It was just historic because it set the stage for other California systems having to follow the law.

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I learned a huge amount about transportation from Hale. I learned about architectural barriers from Hale, although I was never as interested in architectural barriers as I was in transportation.

Landes

Why was that?

Cone

Well, I don't know. Probably because transportation was a much more hotly-debated political issue, and it was something that I could get my political organizing teeth into. But I worked on architectural barriers issues with him because at various points he was commenting on proposed state regulations from the State Architect's office around accessibility, which were very important. And Hale was writing comments, and he was asking my opinion or asking me to translate for him. I was tangentially involved in that sort of thing. Or I would frequently present testimony for Hale on issues. He would write up the testimony, and I would just read his statement. I would translate his answers in hearings. So I learned about it. That's really what I started with, the program in Oakland. But I was personally motivated by that.

Role as Political Organizer at CIL

Cone

One of the odd features to my job history at CIL was that it started with Ed saying to me, "What do you want to do?" I told him that political organizing was the only thing I knew how to do, and he said, "Okay, you can do political organizing. Work with Hale." So part of it was working with Hale on what his issues were. Over time I became the organizer in residence whenever there was an issue to be dealt with, and things came up quite frequently. At that time--and I'm talking, say, from '74 to 1980 --it was a very politically active period.

A whole variety of issues would emerge, some of which I knew very well because I was working on them regularly and others which I didn't have any knowledge of, like the 504 regulations. I would be told, "Take this on as a project. Organize around it." This has been a positive thing and a negative thing for me. With the exception of the transportation issue, I didn't have a very consistent job. I'm a fast learner, and I can articulate issues well if they're explained to me. So I would be told, Okay, this is happening; we need to organize around it, we need to have a demonstration. They're going to cut the county funds, or they're going to take the agents out of the BART stations or whatever. Go

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do something. And I would collaborate with Hale or with Judy [Heumann] or with Greg [Sanders] or whoever.

I was like an organizer person, so I would learn the issue in collaboration with somebody else. I would help develop press releases; I would organize a coalition whether it was with the transit union or other groups in the community and then would help organize the rally; I would speak at the rally. I would talk to the press and then move on to another issue. In one sense it was bad for me because I never developed any area where I felt completely at ease and comfortable with the material I was dealing with, except for transportation.

Landes

It sounds like what you were doing is using the skills that you had learned in the antiwar movement, and the women's movement, and the civil rights movement and putting those skills to use in the independent living movement. Were you aware that that's what you were doing at the time?

Cone

Sometimes I was aware of it. But it just came second nature to me. We'll get into the 504 sit-in at a certain point, and that's how I ended up working on that. Judy Heumann, who was on the ACCD [American Coalition of Citizens with Disabilities] board, said to me that if these regulations are not signed by April 5, we're going to have sit-ins because ACCD is going to call for them. Will you take this on as an assignment? I was taken off my job and sent in to another place to organize [chuckles].

Landes

So this is early 1977.

Cone

Yes.

Landes

We'll take that up later.

More on Hale's Impact on Kitty and the Movement

Landes

Is there anything else you want to say about Hale? His impact on you?

Cone

I learned a tremendous amount from Hale. Sometimes I wasn't even aware that I was learning it. I learned substantive things. He taught me issues. He taught me attendant care; he taught me SSI; he taught me transportation and architectural barriers. I think probably I taught Hale something about community organizing. So I always felt that we were a very effective team. We were very fond of each other, and we always had a lot of fun together. I was a

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lot stronger when Hale and I first started working together, so we would go to Sacramento--I don't know how we got there--someone must have been driving the car.

Oh, I've got a great story. I would feed Hale, and there we would be, the two of us, and I would sort of be crawling up his chest with a sandwich in my hand and Hale would be snapping at it. Hale's eating habits are, you know--one time Hale tried to get Eric Dibner to feed him a sandwich that he'd had in the refrigerator at CIL for weeks. The meat had turned green and I remember Eric saying, "I'm not giving you that." Hale is known for being parsimonious; he really guards every penny, and he will not take an extra cent of attendant care money that he doesn't think he deserves, so he's never gotten the maximum amount of attendant care money because he feels that he doesn't need it. Yet who is more disabled than Hale Zukas? [laughs]

Hale, I believe, was writing some document about the overpasses over freeways and how to make them accessible, how to ramp them so that it wasn't just a staircase going up and then you walk over. I think he was doing this for the Federal Highway Administration. I don't know if that's why he was doing it, but I remember one time someone was driving us to Sacramento, and we were in the car with Dick Santos, who's blind. Hale and I were in the back of the car, and Dick was sitting in the front passenger seat. Hale had given Dick his camera. Whenever we would go under an overpass, Hale would say to Dick, "Okay, point to the right. No, no, more to the left." And you know, he's very hard to understand, so he would start this process, and Dick would be poking around with the camera and Hale would say, "Up, up!" And then he'd poke with his stick into Dick's shoulder, "No, no! Up, up! Click!" [laughs] and Dick would take the picture.

It was fun working with Hale. Hale has a great appreciation for people too.

Landes

So you had a blind man taking pictures for Hale.

Cone

Yes, Dick Santos.

Landes

While you're traveling to Sacramento for a demonstration.

Cone

Well, we were going to lobby or to do something. We had this front group [laughs] that was called the Disabled and Blind Action Committee--DBAC--that when the issue was too hot for CIL to deal with itself, we would pull out the DBAC letterhead and call an action in the name of the Disabled and Blind Action Committee [laughs]. I think that Dick and Hale were the nominal leaders of this nonexistent organization.

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Landes

Do you have anything else to add about Hale's impact on your own development within the movement and your political development?

Cone

I learned that the issues were political from Hale. I knew they were political, I knew that we needed to engage in political action in order to get what we wanted. One of the things that was very different for me was that I had never been someone who believed in lobbying up to that point. I really believed in attempting to change the whole system. Hale and I had innumerable discussions about Democratic party candidates, because I still to this day do not support the Democratic party. Hale and I would have arguments and we would tease each other because Hale--I think Hale's family was in the Communist party, and I don't know if Hale ever was in the CP, but he sort of had those CP type of politics. I used to call Hale a Stalinist and tease him; it was all very friendly, you know.

I had not had any experience lobbying prior to working with Hale, because I had always been doing stuff absolutely from the outside, not trying to work the corridors of the legislature. I learned that from Hale.

Greg Sanders' Benefits Counseling

Landes

Greg Sanders was another person that was working with you and Hale. Tell me something about what Greg did and what your relationship was with him.

Cone

At a certain point, Greg and Hale and I were the staff of what was called the Community Affairs Department [for CIL]. I think at one point Hale was the director, another point Greg was the director. I think I might have been the director at one point. It was just a title that we passed around. This is like probably '76, '77, '78, and further on.

Greg was doing benefits advocacy at CIL. He was advising people how to get on SSI, how to stay on SSI, how to get on SSDI [Social Security Disability Insurance], what happened if you went to work, how you could lose your benefits, how you could try to keep your benefits. He was a very, very good individual advocate for people. In the course of helping people, he realized that there were these basic contradictions or basic disincentives built into the social security and SSI systems. If a person who was on SSI went to work, got any kind of a job--even if they got enough to make up for losing their SSI--they could lose their attendant care money. Eligibility for attendant care money was based on

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qualifying for SSI, or if you were on SSDI and were getting SSI you could lose your Medi-Cal money, or you could endanger it. You might still be poor enough to qualify for some Medi-Cal. If you were on SSDI and you engaged in what was called "substantial gainful activity," which at that point was like earning over about $200 a month, you could lose your SSDI and therefore your Medicare. At that point it was absolutely ironclad; if you had a serious disability you could not get health insurance anywhere else, even with your employer if you got a job many times.

Greg, in addition to helping people work it out on a local level, had an impact on the Berkeley office of Social Security. If his clients were earning $300, Greg convinced them that--say that person was working at CIL--the support that they were getting at CIL was sort of a subsidy and that they were not really working in the sense that they couldn't be working in an outside job. They couldn't really do that kind of work in, say, a banking situation --because at CIL people were getting taken to the bathroom, they were getting transportation, they had what would be called reasonable accommodations today--much more than reasonable accommodations. So he was helping impact the Berkeley Social Security Office.

But then he began to deal with SSI, the disincentives issue, on a state level and then on a national level--also the SSDI disincentives issue, and he became one of, I would say, two national leaders on the disincentives issue and had a big influence, I think, on legislation. He had a big influence on [Senator Robert J.] Bob Dole, I believe.

Landes

What do you know about his impact on Bob Dole?

Cone

I think he met with Dole and convinced him of the necessity to try to do away with some of the disincentives.

Landes

When was this?

Cone

I think this was probably '77, '78, or '79. He and Doug Martin from southern California were very important working on that issue. And the issues did not get resolved by a long shot. They made some serious steps forward in helping people on SSI keep attendant care. I think they made some changes in the SSDI thing, but there still are big problems.

Landes

What did you learn from Greg?

Cone

Greg was so different from me. Greg was so very, very well versed in his subject. He was absolutely, profoundly informed. I envied his trajectory of going from local to state to national and just

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having an issue that was completely under his belt. I think I learned respect for having a huge amount of information and facts at your disposal. I learned some about the issues. I was working the issues with Hale before I think Greg got involved in it because Greg then began to deal with all the health and welfare issues and took on SSI cost of living increase issues and dealing with IHSS [In-Home Supportive Services] issues--political issues that had to do with the benefits that he'd been counseling people about prior.

Greg was a very independent operator. It was fun working with Greg. He was not a gregarious person; he was a very private person. He and Hale and I in an office together was most interesting [laughs] because we were all so very different.

Landes

But you liked him?

Cone

Oh, yes, I did. He became sort of a hermit in his old age, I think. He was just not out and around very much--not in his later years; he wasn't that old when he died.

Landes

Is there more that you'd like to say about that period in which the three of you were working? And this would be 1974, 1975--before you go to Mexico.

Cone

Other people began dealing with architectural barriers. Jerry Wolf and Eric Dibner--and I'm not exactly sure what they did, but they dealt much more with impacting the City of Oakland, and I think they dealt more with helping individuals, and we dealt more with trying to just make changes in communities as a whole or within the state.

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V Sojourn in Mexico, 1975-1976

Falling in Love with Alma Noriega

Landes

Sometime in the fall of 1975 you moved to Mexico. Tell me the circumstances of that and why you went.

Cone

I was involved with this woman who was Mexican, who had grown up in the United States from the time she was about eleven and had gone back to Mexico for a couple of years. She and her daughter and I were living together and she--

Landes

What was her name?

Cone

Alma Noriega. Her daughter's name was Claudia. She really missed Mexico, and I was just fascinated by everything she told me about Mexico. She really wanted to move, and so I decided that this would be an adventure, that I would go with her to Mexico. I was in love with her, so I wanted to go--

Landes

So you quit your job at CIL?

Cone

I quit my job at CIL. I didn't really have a clue what I wanted to do. I guess you could say I was mesmerized by her, because her life story was so interesting. In gay terms she was very "butch," and she came from this family with many beautiful sisters. They had all gotten married and Alma was just absolutely out there; she refused to dress in feminine clothes. She wore boots, she wore big, tough-looking belt buckles and jeans all the time. I really admired her for being who she was. It was hard for everybody--it was triply hard for her because anybody who looked at her knew she was a lesbian, and she was not about to hide it, and she had suffered within her family and wherever she had been. She was a very charming person, and she was a very engaging person, so she

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had a lot of friends. People accepted her after a while. But at one point one of her brothers--

Landes

How did you first meet her? How did you become involved with her?

Cone

I met her at a bar. Then she was my attendant for a while. Then I think we just fell in love as a result of being around each other.

Coming Out as Lesbian

Landes

We haven't yet talked about your coming out as a lesbian. When did you first become involved with women?

Cone

I guess it was early 1971. I was working in this women's coalition called the Women's Day Coalition in Chicago. I really didn't have a clue about anything [chuckles], and I got involved with this group of women, one of whom was Margaret Sloan, who was one of the founding members of Ms., and she's the author of a book of poetry called Black and Lavender. Margaret and her crew of friends sort of took me under their wing and took me around to gay bars and stuff and I--

Landes

In Chicago in the early seventies?

Cone

That was an interesting scene. It was still very butch-femme. On the one hand, people were coming out and being very radical. On the other hand there were people who you would see in a bar who were completely--they would ignore you if they saw you on the street. It was like you didn't talk to each other. So it was an interesting time; it was a transition time, I think.

Landes

When you went around to these bars did you see other disabled women?

Cone

Never.

Landes

So you were going to these lesbian bars as a disabled person--

Cone

I think maybe one or two.

Landes

--and rarely saw other gay disabled women.

Cone

Yes. And I think that was true when I came out here too. I had this whole crowd of women--see, this woman Dorothy Dillon--I had been head of the high school fraction of the Young Socialist

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Alliance, and Dorothy was a high school student in Chicago. Dorothy and I were both in the SWP [Socialist Workers Party] out here in the Oakland-Berkeley branch. Then Dorothy got involved in a relationship with Joni Breves, who is now the head of the Computer Technologies Program. I sort of brought Dorothy and Joni along on my coattails [laughs] into the disabled movement because I got them involved in a sit-in by saying, "Here--bring picket signs and come demonstrate."

Landes

So that's much later.

Cone

Yes.

##

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Landes

We were talking about your going to Mexico with Alma Noriega in late 1975.

Cone

We wanted to live on the ocean. At this point, I had a van that made up into a bed in the back and had a toilet in it and all kinds of stuff. We decided that what we were going to do was drive down the coast, then we were going to pass through the city where her mother lived--Culiacán, in the state of Sinaloa. Then we would go to Mazatlán and Puerto Vallarta. We would just look at places and see where we wanted to live.

We started with Guaymas, and it seemed too spread out and it just didn't seem right. So then we went on to Culiacán, which we knew we didn't want to live there. Then we went to Mazatlán, and we stayed for about a month between Culiacán and Mazatlán. Mazatlán was too touristy. Then we went to Puerto Vallarta and we liked the Mexican section of Puerto Vallarta--what we called the non-tourist section [chuckles]--but it was all cobblestones, and everything had steps.

Settling in Manzanillo

Cone

So then we drove down to San Blas, and that was just too many mosquitoes and too tropical. It just wasn't a city. Then we got to Manzanillo, which was just perfect. Manzanillo had tourism in those days, but for the most part it was very, very rich tourists and they all went to this elegant resort called Las Hadas, and they never went down into the little city of Manzanillo. Manzanillo is, I believe, the biggest port on the west coast of Mexico. The city itself hadn't been very influenced by tourism. It was just a very nice little town with a jardín--garden--you

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know, where you go in the evening and you take a stroll--it's really like the town square. There're people selling popcorn and tacos and couples go and hold hands, and guys flirt with young women, and children play.

So we found this house, and we found a person to do my attendant work who had a daughter the same age as Claudia. Alma found a job as a mechanic. I think she must have probably been the only woman mechanic in the entire country at the time [laughs]. The good thing is that I learned to speak Spanish; I learned so much about Mexican culture, which I really, really love. For some reason I had taken the collected works of Alexander Dumas [laughs], and I was reading all of that. I was ordering books from the states, and I was buying every book I could find that was in English. So I had this rather unusual life of going from being a super activist to being a sort of housewife. The house was really a nice house; we were right on the beach. There was a house on one side of us, but on the other side of us there was this vacant palmetto area. We had this beach wall with steps going up and then down onto the beach. But the beach was only about three yards wide and then there was the ocean. There were coconut trees in the yard.

So my life was get up in the morning; and we hired this guy to drive me to the grocery store--it wasn't a grocery store, it was the mercado, where you go around from stall to stall and you pick out your meat. Lots of different people bring in their produce or their meat and you go from stand to stand and try to pick out the best bargains and the best quality. So I learned about Mexican food. The woman who was my attendant was the best cook--oh, my God, I learned to love Mexican food. So I would go to the mercado and pick out the food and then come back and play with the kids and read and study. Then Alma would come home, and in Mexico you eat the big meal in the middle of the day, like from two [o'clock] to four. Then she would go back to work and I would usually take a nap. When she got off work we always, almost every single day, went out to party. I look back on it and I feel guilty about Claudia, although Claudia was at home with Ceci [Molina] and Fabiola [Molina], her daughter, having a really good time. Ceci was a wonderful mother and was playing lots of games with them. But I think it was a very unusual few years for Claudia, who's doing great now.

One of the things that we did was drink. I think that people can have a genetic predisposition to alcoholism, and I'm sure I had it because my mother was a drinker--I mean, she was an alcoholic. I was never the type of alcoholic that just got outrageously drunken and drove a car into a tree--probably because I wasn't driving a car--although I did have a series of accidents.

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I had a couple of very serious accidents where both Alma and I were drunk and where I fell out of my chair and got black eyes. Once I fell off of the top of my lift, out of my chair, splat on the concrete, and I think had I not been so drunk I probably would have really hurt myself. This freaked Alma out, who immediately sobered up and picked me up in her arms and went running up the stairs--we had a ramp--and laid me on the bed. I had black eyes and bruises and scrapes and stuff. It never dawned on me that there was anything at all unusual about the way we were acting, that we were drinking every single night. I think I probably would have been an alcoholic whether or not I had been involved with a woman, but one of the things about gay culture in those days is that there was no place to go except bars. You met in bars and you socialized in bars.

Landes

Was that true in Mexico also?

Cone

Yes.

Lesbian Life in Mexico

Landes

So you were going to a gay bar with her?

Cone

No. We were going to the Zona Rosa, which is where men go to get women, and respectable women just do not go there. Respectable men all go there. That's where we met other gay women. We would go and stay out every night until two-thirty or something.

Landes

What impact did your being gay have on your lives in Mexico? Did you face harassment?

Cone

Alma did. As I said, Alma was extremely friendly. We arrived in Manzanillo probably in late November, and Alma's birthday was the middle of December. We decided to have a birthday party, and I'm telling you--well, one thing is that Mexican parties are much more open and friendly. You just say, "I'm having a party," and you invite ten people, and twenty-five people show up because everybody brings their friends and family and whatever. So you always prepare a great deal more food than the actual number of people that you've invited. But Alma had made friends all over town, and somebody got mariachis to come play for her birthday party like at six o'clock in the morning. She had met people in the fabric store when she was getting fabric for something. She invited the people from the garage where she was working; she knew people from the mercado where she went to get groceries. I don't

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know how she met these people; she just was an incredibly gregarious person.

So we had this birthday party, and maybe there were a hundred people there. We had a whole roasted goat, and people were cooking and cooking all day long, making all these cakes and stuff. Alma somehow or other knew how many people were going to come, but I didn't have a clue.

Everybody knew that we were gay. We were real out about it. Alma, if a woman would dance with her--I remember one time we were in this very nice club, and people were dancing the cumbia. Alma asked Ceci's sister, Elizabeth, if she wanted to dance. Elizabeth was married. Elizabeth said, "Sure." I have pictures of them, and there's all of these couples dancing, and there's Alma in her jeans and her boots and her shirt with her sleeves rolled up dancing with Elizabeth. Nobody said anything. But there were times, there were certain people who would call her a marimacho--which is like "bull-dyke" or something in Spanish--and say things about it.

But also we were leading this lifestyle that was not discreet at all--I mean, there was this whole other layer of running around in the Zona Rosa that was adding to it. I am sure that Ceci's sister was a lesbian. One of Ceci's sisters, who had this very important job at Las Hadas--I think in the business office or something; a very smart woman--Xotchil [Molina], she had this "friend" who came to live with her at her family's house. Xotchil was probably thirty-two or something, and this woman worked in a pharmacy, and they slept in the same bed. You can't convince me that there wasn't something going on there. And when we left Manzanillo, we threw a party and it was an all-women's party, and people came and we realized that Xotchil had this whole group of friends that were completely undercover. They were completely in the closet. One of them was Miss Manzanillo. I remember her because she was making passes at Alma [laughs].

On Being Disabled in Mexico

Landes

What about you being a disabled person? How were you received in that town? Did you see other disabled people?

Cone

Never. Well, I saw people--occasionally you'd see somebody begging on the street corner or somebody on a skateboard-type operation, pushing along with their hands. I pretty much knew people in that town, and people would come up to me and say,

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"Where did you get your wheelchair? My mother can't walk and she's been living in this hammock for the past five years." People would tell me their stories. All the time people came up to me and asked me about my wheelchair. It was such a weird feeling; I felt so privileged. I didn't feel like an ugly American, but I felt amazed and kind of uncomfortable that I had this motorized wheelchair and this van with a lift and all this stuff, and I knew there were all these people in the city who never got out of their houses. And that was true all over Mexico.

Landes

Did you attempt to make contact with these people?

Cone

There wasn't anything going on. As far as I know there wasn't even any sort of organization of charity through the churches or anything like that. It just did not exist. It does exist today; things are happening in Mexico today.

Landes

It sounds like that this period that you were in Mexico was a hiatus from your political activism on disabled issues.

Cone

Yes, it absolutely was.

Returning to the East Bay, Late 1976

Cone

The one political act that I engaged in was to write a letter to Judy Heumann, whom I think I had never met but about whom I had heard much. Judy had been in Berkeley in the early seventies getting her master's in health administration, I think. Then she went back to Washington, D.C., to work in the office of Harrison Williams, who was a senator from New Jersey, I think. He later left the Senate in disgrace. He was one of the two main authors of the Rehabilitation Act of 1973--he and [Senator] Alan Cranston. He was very good on disability issues, I'm sure because Judy influenced him.

People spoke of Judy, and I believe I knew that she was coming back to Berkeley to work at CIL. Then lots of people came to visit me in Manzanillo: Maureen Fitzgerald--who I had met in the early days at CIL--and different people. So I knew that Judy was at CIL, and I wrote her a letter--I think this is accurate--about my ideas about the movement, where things were going. Maybe I wrote it to Phil Draper and Phil gave it to Judy. That might be what happened. I was basically not doing anything political at all except talking to people about socialism [laughs]. I mean, I was really being a housewife. I organized the staff, which was basically my attendant care, and made sure that the kids had

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clothes and food and that our life was organized and that we went on vacation occasionally. I just wasn't ready for it. I had a wonderful time until about the last month, and then I just had it; I was ready to go back.

Landes

Tell me about why you decided to come back to Berkeley.

Cone

It was a variety of reasons. I think I didn't like being a housewife; that was the main reason. I had this dichotomy in my life between this gay, personal social scene, and my politics. At various points they converged, but at this point I was only living one half of them, and I missed politics. I felt like Alma was getting plenty of self-expression and was really enjoying her job and who she was. She was running around a lot, and I was sort of the housewife left at home; I was not happy about it [chuckles].

We decided that we would go back to Oakland, actually. The house was in Oakland. I remember we had many vicissitudes with immigration and broken wheelchairs. The combination of the immigration and the disability scene--we had a trip on the way back that is not to be believed. We had to get to the border on a certain date, and the lift broke in the car, and the wheelchair broke, and Alma was carrying me in and out of places. Ceci had another little baby, and he got dehydrated and Fabiola got diarrhea. It was just incredible. And we had two cats in the car. It was really wild.

Landes

Tell me about your arrival back in the East Bay.

Cone

We got back and settled into the house, and I went down to CIL. I guess Phil Draper was the director by this time. Yes, because Ed [Roberts] had become the director of the Department of Rehabilitation. I said that I'd like to come back to work at CIL. They didn't have any funding for community affairs, at that point. So Phil said, "The directorship of attendant referral is open. Would you like to do that?" I said, "Sure."

One thing I know very well now is that I am not good at direct services. I don't really like doing direct services. I did this lawyer referral job at DREDF in 1990, '91. In '92 I did technical assistance for people, answering their questions about whether they had been discriminated against and where they could get services and referring people to attorneys. I ran the lawyer referral service there. I really don't like doing direct services. I tend to get very caught up in individual stories and I have trouble cutting off. I think I'm much more oriented towards making global change than trying to help people work their way through the problems of the system, although I completely believe those services are necessary. I'm not really good at it; it

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doesn't utilize my strengths, and I don't think I'm as good at it as a lot of other people are.

Judy Heumann's Impact on Kitty

Landes

Soon after you come back to the East Bay, you meet Judy Heumann, correct?

Cone

Right, immediately.

Landes

Tell me about that.

Cone

I don't really remember when I met her because my memory's so bad. But I know that we established instant rapport because we were both very political. Judy had a long history of political activism in the disability rights movement on the East Coast--more around disability and civil rights issues. We realized that we were kindred spirits and forged a very quick and strong friendship. Judy and I liked each other personally as well. We liked each other because we were dealing--we were both quite severely disabled and required a lot of attendant care. We could share personal experiences.

To this day Judy and I call each other whenever one of us is having an attendant crisis. When she's having one, she calls me; when I'm having one, I call her. It's just something that we do. That was a special bond between us. She had disability civil rights politics more under her belt than I did. I had come from a much broader political perspective than Judy, I think. I think Judy got political--she probably would have been a Democrat just because of who she was--as a result of her disability, I think. I may be wrong, but I think that that's true. I'm sure she supported the civil rights movement and the women's movement. I don't think she was an activist in those movements. I think it would have been almost impossible for her, actually, given transportation and all the constraints. She's a few years younger than I am, too. I think that we were two people who could talk politics all the time and be happy.

Landes

What were some of the first specific issues that you talked about?

Cone

The first issue that came up was the section 504 regulations.

Landes

Did you learn about section 504 from Judy or had you known about it previously?

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Cone

No, I don't think I had. Judy was on the board of ACCD [American Coalition of Citizens with Disabilities], and the board members--and I guess organization members as well--had made the decision to have these demonstrations if the regulations weren't--I'll go into detail about that next time, I guess.

Landes

So the chronology is that you arrived back in the East Bay perhaps August or September of 1976--

Cone

And immediately take a job in attendant referral.

Landes

Soon after that the 504 call and the planning begins to take place, correct?

Cone

Yes.

Landes

Before we get into that, tell me more about the impact Judy had on you. What is it that you think you learned from her?

Cone

Over the years Judy always pushed the envelope. I remember one time Judy and Mary Lou [Breslin] and I were sitting in her bedroom in her apartment on Blake Street, and we were talking about what we would do if the cure came along. Mary Lou and I said we'd take it in a flash. And Judy said, "How could you? That would diminish the ranks. We couldn't have leaders taking the cure."

Years later when the women's movement--Judy became very involved as a woman leader with a disability. So when they had the international year of women--I think that might have been when I was in Mexico. In any case, Judy went to a conference. She would go to different women's conferences, and when they would debate how they were going to present the position of whatever women's organization on abortion, they would include, Well, of course if you have amniocentesis and you see that the fetus is deformed--and Judy was absolutely--she would go so far because she just really believes that every human being has worth no matter what their disability is.

Sometimes I would say, What about Tay-Sachs, or what about this, or what about that? And Judy would said, "If you start getting into this, then you're going to say, 'What about Down's Syndrome? What about muscular dystrophy?' What if they had said that about muscular dystrophy? What if your parents had said that? You wouldn't be here today." I just learned a great deal from her about how people with disabilities are devalued. I think she provided real moral leadership; the disability issues just came from her gut. She instinctively, always, took the position that every life has value.

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[A brief passage has been withheld from on-line publication.

One thing about Judy and I together is that she does not back down. She has a lot more guts than I have in terms of sticking to her guns, because she's so absolutely convinced she's right, and that's one of the things that makes her such a good leader.

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VI Organizing the Struggle to Sign the 504 Regulations, 1977

The Importance of the 504 Regulations

Landes

Kitty, we've begun to talk about the effort to get the 504 regulation signed in 1977. Why was it so important that the 504 regulations be signed?

Cone

The legislation had been passed in 1973, and an inordinate amount of time had passed and no final regulations implementing section 504 had been issued. Section 504 of the Rehabilitation Act of 1973 essentially said that no recipient of federal financial assistance could discriminate against an otherwise qualified handicapped individual. This was an extremely important piece of civil rights protection for people with disabilities, the first federal law. There had been the usual process involved when regulations are promulgated; there had been a set of regulations issued for comment and people from the disability community made comments. The entities that would be affected, which were educational institutions, universities, colleges, hospitals--any recipients of money that came through HEW, the Department of Health, Education and Welfare.

I'm not being real coherent here. This first set of regulations that was going to be issued by the Department of what was then Health, Education and Welfare--HEW--were going to serve as the guidelines for other federal agencies which also had to develop 504 regulations. Any concepts or principles that were embodied in this first set of 504 regulations would be presumably carried out in the regulations developed by the other federal agencies.

Landes

So the key to getting effective regulations throughout the federal departments lay in getting good guidelines out of HEW.

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Cone

Yes. The HEW regulations were the most important. So concepts of integration, coverage--

Landes

Integration as opposed to separate but equal facilities?

Cone

Right. And that was an issue that actually came up. These regulations would set the standard. So if you ended up with some sort of concept of separate but equal in the HEW regulations that would apply to institutions of education, you could then see them being embodied in, say, a Department of Transportation 504 regulation, which would say that you don't have the right to ride the mainline transit but you will have your separate little transit system--your paratransit system. Everybody knew that "separate" for people with disabilities is not "equal." That's one of the reasons why it was very important.

As I said, the regulations had been in the process of development for a very long period of time. Around--I think it might have been in 1976, the Secretary of HEW under President [Gerald] Ford sent the regulations to Congress because he felt that the congressional intent in this single phrase [of the 1973 Rehab Act] was not really clear. This was his justification: he wanted them to sign off or make clear what their intention was when they passed section 504. Well, Congress said that this is not the role of Congress.

Landes

Who was the secretary of HEW under President Ford?

Cone

[David] Mathews was his name. So Congress sent them back to him. The disability community had gone to court to try to get the regulations issued, because they said that it was just way too long a delay. That effort didn't result in anything initially, as I recall.

Landes

Were you involved at that point?

Cone

I wasn't involved in this whole period leading up to the Carter administration coming into office, because I was in Mexico. I guess I got back into town like October, so that effort was being carried out by ACCD.

Landes

And ACCD is what?

Cone

The American Coalition of Citizens with Disabilities, which was a large umbrella-like coalition of people with all types of disabilities--many, many organizations belonged to ACCD, and I believe, if I recall correctly, that in order for an organization to be a member of ACCD their leadership needed to be people with disabilities or parents of children with disabilities, so that it

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was definitely representative of the constituencies that the organizations claimed to represent. They had board members from all around the country. Judy Heumann was a member of the board.

The executive director was a deaf man named Frank Bowe [spells], who was an extremely eloquent person--I would say a little more conservative, in some ways, than the California disability community. Frank was the lobbyist for ACCD and was the person who worked the Hill and found out what was going on with legislation pertaining to disability. That was a big part of his role, to be the lobbyist and to bring issues that were current--usually national issues--to the board or the board would bring them to him. So ACCD at this point and throughout--up until the signing of the regulations--was the official leader of the disability community. Where was I going with this?

The Carter Administration's Position

Landes

How did the transition from the Ford administration to the Carter administration affect the effort to get these regulations signed?

Cone

Jimmy Carter was confronted by disabled activists about what he would do with the 504 regulations. He had made a commitment--actually he made it at Warm Springs, in Georgia, which is the rehabilitation center that was initially started by [President] Franklin Roosevelt for therapy, and many, many people with polio went to Warm Springs for rehabilitation. It was a very historic place for him to have said that he would make sure that the regulations were signed.

Landes

So Carter had made a commitment to sign the regulations.

Cone

Yes.

Landes

During the campaign.

Cone

Yes. And people expected that that was what would happen. Then during the transition period--I guess when a new administration is coming into office the period between the election and leading up to the inauguration they do a lot of consulting with different constituencies and people and groups that they want to be represented in the administration and whose issues they will take up. As I understand it, there really wasn't any of that going on with the Carter transition team, and I think that that gave ACCD pause. They were concerned about that.

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Landes

That they were seeking no input from the disabled community?

Cone

Right. Frank Bowe had access, and then after the new administration was sworn in the new secretary of HEW, Joseph Califano, who was a very high-powered attorney--I think Califano had some interest in the Washington Post. This is how I remember it. Anyway, Califano came into office and they fairly quickly looked over the regs. It's hard to know what happened, but I think that probably interests representing the hospitals, the schools, the universities, and all of the recipients [of federal funds]--these regulations weren't going to just apply to the great big institutions; it was also going to apply to medium-sized institutions getting HEW money, say, through Medicaid or education funds. There was pressure coming from the other side, but it was sort of covert, and I think they decided that this was going to be a very, very expensive proposition.

Landes

So opponents of the proposed 504 regulations did not want to publicly oppose them. You think that they were operating covertly behind the scenes to put pressure on Califano to institute some changes?

Cone

I think that that was going on, and I also think that the administration just thought if everything had to be accessible, if the regulations went as far as they did, that it was going to cost millions and millions of dollars. They thought that they just went too far. So they set up a task force which was to yet again review the regulations, but there was nobody from the disability community represented on that task force.

Landes

Do you know who was represented on the task force?

Cone

No, I don't. That's an interesting project to find out. I think there were people from different government agencies on it. Judy would know.

Landes

Perhaps some private sector representatives?

Cone

I'm not sure; I think it was a governmental task force. But in any case, they were going to revise the regulations, and that became clear very fast--because there were friends on the inside who were letting ACCD know what changes were being considered.

Landes

Do you know who those friends were?

Cone

Yes. I think it's kind of a secret [laughs].

Landes

Okay.

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Cone

It probably isn't anymore. I think one of them was Peter Libassi, who was in contact with Judy.

American Coalition of Citizens with Disabilities Develops a Strategy

Cone

It became clear that the task force was watering down the regulations. So ACCD, I think, developed a very, very good strategy: instead of waiting until the task force finished its work with no input from the [disabled] community and HEW then issued a set of regulations that was considerably watered down, ACCD took this very proactive stance that if the regulations were not issued unchanged as they had been when the Carter administration took office, when Califano took his office, there would be demonstrations.

Landes

Was there a date set for them to be signed?

Cone

Yes, the date was April 5. That book Randy Shaw, The Activist's Handbook: A Primer for the 1990s and Beyond. Berkeley: University of California Press, 1996. is wrong.

Landes

April 5, 1977?

Cone

Yes. I think that this ultimatum was issued in March. ACCD said, "If you do not issue the regulations unchanged, we're giving you until April 5, then we're going to take action." That was really rather brilliant, because it meant that ACCD wasn't going to allow the whole process to drag out and lose the initiative, that they were going to mobilize people and that they weren't going to be at the mercy of the administration, and that they weren't going to allow the administration to just drag out and drag out the process and then present them with a fait accompli.

Landes

Were you at all involved in developing this strategy?

Cone

No, this strategy was developed by the ACCD board.

Landes

Were you talking with Judy during this period from mid-January to early March?

Cone

Yes, somewhat, but I don't think that I had any sort of influence in developing that strategy; that was really ACCD, people from all around the country who were the elected leadership. I believe

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that they physically got together and they were also talking on the phone, and there was a great deal of--I'm sure it would be interesting to know what the discussions were that went on within the ACCD board. I'm sure that I knew at one point because Judy used to tell me about all the different things that went on at ACCD. I afterwards attended a number of conferences, and it wasn't always very smooth.

Landes

What was the level of your involvement then, between mid-January and early March?

Cone

Practically none. I'm not sure when ACCD issued the ultimatum, but as soon as they did, as soon as they said you have until this date--and probably before that--we knew that there were going to be sit-ins organized. The tactic that was chosen was sit-ins at all of the regional headquarters of HEW. So that included New York, Washington, D.C., Philadelphia, maybe Chicago. Something happened in Pasadena.

Landes

And this decision to have sit-ins was made by ACCD?

Cone

Yes.

Landes

How did you find out about it? Do you remember when Judy or somebody else told you that this was going to be--

Cone

It would have been Judy. Judy came to me as soon as we knew we were going to do it.

Landes

How did you feel?

Cone

I thought it was a great tactic for a variety of reasons. One is that organizing people with disabilities can be very difficult, more difficult in other communities than it was in the Bay Area because of transportation and attendant care--just being able to go to the bathroom. Organizing people to get together to plan an action is sometimes very difficult, and you've got all kinds of issues involved in notifying people through TTYs [teletypewriters] and producing materials in Braille and getting the word out to all the people. Also, with people with severe disabilities, you've got transportation problems. I mean, can you imagine how difficult in New York City--remember, there was no accessible transit; there wasn't paratransit, there was nothing in those days. In some communities, people were still living in the nursing homes--people with severe disabilities.

A sit-in, in some ways, was much better than a one-day action where you've got people out, there was no response, you lost the momentum, and then you had to try to do it again.

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Because if you've got people there, with all the support systems necessary--as much as possible--then you had a sustained action, you put the administration into a very difficult position public relations-wise. You had people together and you didn't have to keep bringing them back and forth [laughs].

The other thing, which is very obvious, is that a sit-in was a tactic of the civil rights movement, and it was a way of drawing the parallels between this issue and the civil rights movement of the sixties. People all over the country were not thinking of people with disabilities as an oppressed minority or a group deserving of civil rights; they were thinking of people with disabilities as a group--whatever, Jerry Lewis [laughs]--of people who were objects of charity, objects of pity, probably a group of people who were very weak. It just was not part of the public consciousness. So a sit-in was a really good tactic to show that we were a civil rights movement and part of the whole history of struggling for progress for our community.

Organizing the San Francisco Sit-in: The Role of the Disability Rights Center at CIL

Landes

So once the word went out to the local areas to organize sit-ins at the district HEW offices, what happened here in the Bay Area? Were you initially involved in the effort to organize the sit-in?

Cone

Yes. Leading up to my leaving for Mexico, I had this role of resident organizer at CIL, and following the sit-in I continued to have that role. When I came back from Mexico I took a job in the attendant referral department at CIL, and I was doing volunteer fundraising for CIL. Judy Heumann came to me right from the very, very beginning and said to me, "Will you work on organizing this?" At some point I said to her, "Yes, but I can't do my job too." And she said, "What I want you to do is take this on as your job. You will be working and paid by CIL, but you're going to go organize and work on organizing this."

Landes

Is this in early March?

Cone

I think that's when it was--and then I'll go back more to how we built the coalition. CIL had what was called the paralegal program; it was called Disability Rights Center, which was run by this Vietnam veteran named Jim Peachum. There were people with different disabilities working in the paralegal program as paralegals. Gary Gill, who's blind, was one. Guy Guber, who's blind, was one. Olin Fortney, who's deaf, was one. Mary Jane

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Owen, who was blind, was one. Connie Souci, who was a wheelchair user--I know I'm forgetting critical people. They were a group of really sharp and capable people who were working in this paralegal program, and interestingly enough, Ann Rosewater, who at that time was working for Children's Defense Fund in Washington--Children's Defense Fund was involved a lot in special education at that time --had come out to train the paralegals about special education.

I guess this happened later, when we got actual information about the specific changes that were being proposed. Ann came out here--and I think probably canceled her trainings about special education--and basically trained every one of those paralegals and me and other people and Judy about what the ten changes that were being proposed were, what the ramifications of them were, and how to explain them, and what the pros and cons were. So you had this core group of people who were the organizers for the demonstration who really, really understood the issues. Oh, and Bob Allemand, who is a wheelchair user.

My role was to take what was decided in the big, broad coalition meetings--and I'll talk about how we built that coalition--to take those decisions, like to do outreach to community organizations, or to get sponsors, or to get particular people to speak at the rally that was going to be held on April 5, and organize this group of paralegals to carry out the decisions. So I was sort of the organizer--and they were all organizers as well--and took responsibility for particular areas of work.

We held the big coalition, the 504 Emergency Coalition meetings at CIL, and initially we called a meeting of every single organization that we could think of that might be interested. The different independent living centers, different organizations serving people with vision impairments, hearing impairments, what was then called Aid Retarded Citizens, and built like a little ACCD in the Bay Area and even reaching beyond the immediate area.

At those meetings we never talked publicly about the fact that we were going to have a sit-in. We told people individually to bring their sleeping bags, that there was going to be a sit-in, but when we were planning outreach, or the rally, or getting medics or getting monitors, or whatever, we--

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Landes

Say more about the role of the Disability Rights Center and the organizers within that group.

Cone

All the paralegals took on a particular responsibility. We used to have--you wouldn't call them staff meetings; they were more

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like organizational meetings, once a day, and people would report what was going on with their particular area of activity. We had a press committee, we had a food committee, we had a medics committee, we had a monitors or security committee, we had an outreach committee and a publicity committee.

Landes

Do you remember who was in charge of each of those committees?

Cone

I remember some of it. Connie Souci was in charge of getting medics. Judy always feels we should not emphasize this, because she doesn't want it to have any sort of medical taint to it. But for any big demonstration you always have medics; you don't know

what's going to happen--if somebody's going to faint or if the cops are going to hit you on the head or what's going to happen. So it's normal operating procedure to have medics for a demonstration. But we also involved people who were rehab docs and who were part of the movement.

Landes

Such as the--

Cone

I think Shelley Berrol, who has passed away. I think Edna Breen, as a matter of fact, who is a rehab nurse. We knew that if we did stay there any length of time there were going to be issues that we were going to have to deal with--people there were going to be using catheters and needing particular drugs and that sort of thing. But mostly the medics would just deal with regular stuff. Connie organized the medics.

Building the Bay Area's Coalition of Disability Organizations

Cone

Mary Jane Owens, I think, did outreach. I think she was contacting disability organizations. I'm pretty sure this is right, because I think that we brailled her up a list of organizations, and then she was calling them to see if they would endorse--if they would bring people out, if they wanted leaflets.

Oh, I remember making the leaflet. This was back before the days of computers. I made the leaflet for the demonstration using those little plastic letters that you cut out with an Exacto knife. I remember being at Judy Heumann's house, and we were trying to think of what would be a good slogan. How could you possibly encompass this complex issue in a leaflet to get people to come out. We came up with a slogan. "People with disabilities: the federal government is trying to steal our civil rights." [laughs] If you stop and think about it, what the heck does it mean? But then we have a little paragraph explaining that

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section 504 defends our civil rights, and the federal government is trying to weaken it. Then it said, "Demonstrate April 5," and the time and date, and the time of the rally.

So we had bundles of these leaflets that we were taking around. And Mary Jane was calling groups and saying, "Would you take some leaflets? Would you notify your membership?" I'm pretty sure that was her job. I believe Steve McClelland, another deaf guy, was one of the paralegals. They were lining up interpreters, and they were lining up sound equipment. There was a particular group of people who worked on the rally. The speakers, I believe, were decided at the big meetings--who we wanted. Then people would contact them. All the information basically came back through the DRC telephone number.

Landes

When you're saying "the big group" you mean you and these other paralegals that--

Cone

No, I mean the big larger coalition. In the large coalition meetings which were happening I think once a week or once every--

Landes

This is the larger Bay Area analogy of the coalition of disabled organizations?

Cone

Yes, and it wasn't a formal coalition. I think we called ourselves the Emergency 504 Coalition. But it wasn't something where you pay dues and had official membership; it was something where you came and represented yourself and your constituency. It was like a "one person, one vote" kind of thing. In those meetings we decided who would speak at the rally and who we would try to do outreach to.

Landes

What do you remember about those meetings?

Cone

That they were pretty unified. I think we only had a few.

Landes

Were there disagreements in the course of the meetings?

Cone

I don't remember any. But that doesn't mean there weren't.

Landes

Were there disagreements within the group of paralegals from DRC that you were working with?

Cone

Not at all.

Landes

So there was a consensus of what to do both within the smaller group and the larger coalition?

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Cone

I think so. We were so focused on building--we had the call, we knew what we were doing, we knew the date, we knew where we were supposed to do it. It really was an issue of going out there and building it--up until we got into the building and then there were real tactical decisions that had to be made every single hour.

Expanding the Coalition to Include Other Constituencies

Landes

How did you build the coalition beyond disabled organizations?

Cone

That, I think, was one of the great strengths of the sit-in. We knew that we wanted to bring in other civil rights organizations, other constituencies, trade unions, and churches--that we wanted to build the broadest community support that we possibly could. I think a lot of people in the big, broad coalition meetings had that perspective. I had a lot of contacts at that time because I was not too many years away from my work that I had done for the SWP, organizing for CoDel [Committee for Democratic Election Laws], or the women's movement or whatever. I knew some people to call, and I think actually--I'm trying to remember if she was doing this in advance--no, she wasn't. I was thinking of Dorothy Dillon, who also had been in the SWP. I think she still was in the SWP at that time. Dorothy also had a lot of contacts, but that might have been once the sit-in got going.

Kitty's Perspective as a Community Organizer

Cone

It was pretty obvious to us who you contacted. The black organizations were the NAACP, the Black Panther party, different church groups. We contacted the San Francisco Council of Churches and Glide Memorial Church. Of course [Reverend] Cecil Williams and Glide are an entire force in the city themselves. Also Delancey Street, which is a program for ex-prisoners and a recovery program for people who had been addicted to drugs or alcohol, and which was one of the groups that was affected by the 504 regulations and was the subject of great controversy. Should I say something about that?

Landes

Absolutely.

Cone

Here's an example. If alcoholics and drug addicts don't have coverage under 504--say somebody who is a recovering alcoholic who hasn't had anything to drink in ten years, but has a history, and

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is known for having been an alcoholic and is being a coach, say. And his program is getting federal funds, and then some parent says, "This guy used to be a drunk; I don't want him coaching my child." He has no protection if alcoholics and drug addicts were eliminated. That's an example of the protections of Section 504. So we felt like it was really important. It was quite controversial; a lot of people who agreed with everything else we were fighting about did not agree with that one. Was that clear?

Landes

Yes. In doing your organizing, you were doing education in these other constituencies about 504 and civil rights for disabled people.

Cone

Yes.

Landes

Were these other organizations and people involved in them receptive to what you were saying or did it take a lot of work to convince them of the--

Cone

No, they were very receptive. The people that we got to come, representing their organizations to the rally initially and who then went back to their organizations and their constituency and built the rallies that took place outside the building while the sit-in was going on--a lot of them were people who were quite political and had been involved--I mean, a lot of them were people that I knew already.

Landes

Who for example?

Cone

Sylvia Weinstein from NOW [National Organization for Women]. People knew Cecil Williams from Glide. Some of the union people Ed Roberts was in touch with, like Tom Hayden. Ed was in Sacramento at the time, but we knew who was who.

Landes

What unions were especially supportive?

Cone

Ultimately we got the San Francisco and Oakland Central Labor Councils, but I think we got the whole California Central Labor Council to endorse after a period of time. The union that was the most outstanding was the machinists--the International Association of Machinists [IAM], who--I don't even remember how we got them involved in the beginning, but they became so very deeply involved that when a contingent of people left San Francisco from the sit-in to Washington, D.C., they arranged for the plane, they rented a giant U-Haul truck that they carted us around in from place to place. One of the international vice presidents went around with us in Washington the entire time; it's like they got religion. It was just the most amazing thing. They turned over their international headquarters to us.

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Landes

Were they involved in the Bay Area early on?

Cone

Yes, they were. And the Bay Area people who were involved got the national people involved.

Landes

Do you remember the names of any of the Bay Area machinists that were involved?

Cone

I remember Robbie Robinson was one of the Washington people. There was a guy named Willie--an African-American guy. I cannot remember his last name. It will come to me.

Landes

Were you a key person--you and then Dorothy Dillon--in reaching beyond the disabled community to broaden the support for the demonstration?

Cone

Yes. My whole adult history, my whole adult life [chuckles] up to that point--with the exception of the period that I worked at CIL --had been as a community organizer or a political organizer. When I first left the University of Illinois and went to Chicago, I worked in the antiwar movement, building antiwar demonstrations. The thing that we tried the most to do was to build broad community support to show the depth of opposition to the war. If there was anything that I had learned from being in the SWP, it was that you always build the broadest support for your issue-- whether it's abortion rights, or ending the war, or equal pay for equal work, or ballot access--that you go to the organizations in the community that represent women and minorities and unions and churches and just go for the broadest support. I think that I brought that perspective, but I think other people probably shared it--of course they shared it. I'm sure Judy had the same perspective.

We knew that we were going to need some food, for example. That's not the reason that we got--well, the Black Panther party got involved because--

Landes

Why did you know you needed food? Why was food so important?

Cone

Because we were going to be living in this building and we didn't want to starve [laughs]. We knew we were going to be sitting in, and we knew we were going to want food, but I don't think any of us thought that we were going to be in there for twenty-six days when the thing started.

Landes

When you tried organizing for food support, you were initially just thinking in terms of a few days?

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Cone

Yes. And the organizations that initially gave us food were organizations that we wanted their support anyway, like Glide Memorial Church or Delancey Street or the Black Panther party. Those were the three organizations that gave us the most support in terms of food.

Landes

And were they providing food the first day, or after you had been in a while?

Cone

I think it started after we had been in for a day or so.

Landes

But the groundwork had already been established for their support.

Cone

Yes, yes. And that was one of the things that allowed us to continue.

Landes

What were some of the other efforts that you were undertaking during March, in the weeks leading up to the sit-in? At DRC, what all were you involved in?

Cone

Outreach was one thing. The logistics for the rally was another, which involved stage, ramp, sound, speakers, permits, all of that kind of stuff.

Landes

Were you getting help from unions for things like sound and stage?

Cone

I think we did; I don't remember specifically, but I imagine that we did. We had other union support, which I cannot remember all of it. But we had SEIU [Service Employees International Union], I believe. We had AFSCME [American Federation of State, County and Municipal Employees], and once we got inside the building we had AFGE--the American Federation of Government Employees. They decided, after seeing us in the building, to support us and took a vote and sent a letter to their national, saying that we were worthy of the support.

Working with the Media

Cone

We were doing a certain amount of presswork. We sent out a news release and tried to get press to come and cover the demonstration, which they did.

Landes

Who was involved in establishing contacts with the press?

Cone

I believe that we did that out of DRC.

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Landes

Was that one of your responsibilities?

Cone

Well, yes--actually it was. I think I was sort of the chair--I might not have been the chair, but I had had a lot of experience dealing with the press. Once we got inside the building--one of the things that was neat was that these committees that had been started, or this initial structure of Connie and the medics, and somebody else and the food, and somebody else doing outreach--this sort of skeletal structure moved somewhat intact into the building so that the same committees continued to function, only with a lot more people on them. I think it's one of the things that made it successful--not to say that there were not dissatisfactions within the building; there were dissatisfactions with the leadership, and people were completely exhausted and zonked by the end of the thing [chuckles]. But most people had something to do. There was a certain amount of card playing and eating donuts and drinking coffee that went on, but people were involved in committees, and then the committees had people who were represented on something like a steering committee. Then there was informal leadership above and beyond that.

But the press committee, for example, we used to get together every night and try to review--this is in the building.

Landes

What about before the building? We'll talk more later about what happens inside the building. Prior to the demonstration, how are you building support within the mass media?

Cone

I don't think we did a whole lot. I don't think we got any advance coverage.

Landes

Did you establish key contacts within the media?

Cone

That happened immediately, as soon as we went into the building. Some of those contacts had their lives turned around as a result of covering the sit-in.

Landes

Is there more that you want to say about that period leading up to the sit-in and creating the support that seems to have been critical once the sit-in begins?

Cone

I wish I had a list of who all the speakers were. I remember Judy spoke, and I remember Sylvia Weinstein spoke, and someone from the NAACP spoke. I think Cecil Williams might have spoken, and I remember I spoke. There were speakers representing different disability constituencies, but there were speakers from community organizations that were supporting it and who came out and gave speeches and brought people from their organizations to the demonstration. And I think that they may have had no idea how

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profound the thing was going to be when they first got involved in it.

Landes

You're talking about speeches that happened on April 5?

Cone

Yes.

The Sit-in Begins, April 5, 1977

Landes

Let's go to April 5. What do you remember about getting up that morning? [chuckles] Were you nervous? How did you feel as you were leaving home to go to San Francisco?

Cone

I have dead memory. I remember being nervous about what was going to happen. How were we really going to get in the building? Were they going to close the doors on us as we were going in? And having a sort of unclear feeling about--I had no idea what it looked like inside the building; I'm sure we had sent people over there to look at it, but I just didn't have any idea what it was like. I remember being up on the stage and looking out and thinking that it was a very good size crowd and that it was very broad in terms of disability and race and that it was a broad group of people. And then I remember that we all raced for the door. I think we all went in one door, but that can't be right. All the wheelchairs went up this ramp on the side of the building.

Landes

Did somebody say, "Let's go inside!"? How did--

Cone

Yes, Judy--

Landes

Tell me something about Judy's speech.

Cone

I don't remember a thing about it except that it was decided that she was going to say, "Let's go up there and ask them what's happening with the 504 regulations! Let's go up there and demand to know why they haven't issued them! Everybody, let's go!" Something like that.

Landes

That was the signal.

Cone

That was the signal, and we all just went in [laughs]. We went up to the director's office--his name was Joseph Maldonado, poor man. Judy was acting as the spokesperson, and she said--and the press, of course, was there taking pictures of every bit of it--"We want to know what's happening with the regulations." And this man knew nothing; he didn't even have a clue. He didn't even know what 504

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was, as I recall [laughs]. He was just made mincemeat out of. He couldn't answer a single question about why they were watering down the regulations or when the regulations were coming out. We wanted assurances, and Judy said, "We're not leaving until we get assurances." So as many as we could, we got into his office and just took it over.

Landes

What were your feeling at that point, when you were inside his office?

Cone

See, this is the difference between me and Judy. This really is the difference. I totally admired Judy's ability to take this man who knew nothing and cream him. But I was feeling slightly sorry for him, actually, [laughs] because he didn't have a clue. But for public relations purposes, it was perfect. It was absolutely perfect. What do you mean you don't know? That kind of thing. It was great.

Landes

You're saying Judy was relentless.

Cone

Oh, always. Yes, fearless.

Landes

Were you relieved to be inside? Earlier you said you were worried that morning as to whether or not they would shut the doors. Once you arrived inside the building and you had a large number of disabled people inside, did you feel that you had taken the next giant step?

Cone

Well, we were in there. There were people inside the building who had no idea that there was going to be a sit-in [laughs]. So it was a process of educating and convincing them that they should stay.

Landes

Some people did not have sleeping bags and had made no preparations to stay more than a few hours.

Cone

Right. But a lot of people had come with a sleeping bag. I remember I brought a couple of pillows out of my van. My attendant stayed for a few days and then left. Some attendants stayed for the entire time; they were absolutely incredible--like Avril Harris, who ended up doing attendant work for the entire--she was just fabulous. Avril had a schedule: every morning she came and brought me two cups of coffee, and she would say, "Here, drink your coffee. I'll go get Judy up and then I'll be back for you." Then she'd go get Judy up--didn't take too long because there was nowhere to take a bath or anything [laughs]. Then she'd come get me up, and then she'd get up a few more people. Nancy Di Angelo was the person that she had come in with.

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One thing that amazes me is the physical stamina--I think we were all operating on adrenalin overload for a month. We were going to bed--we would have these mass meetings of everybody in the building, every evening, to discuss how we should respond strategically, and sometimes they didn't end until one or two in the morning, and we'd go to bed and then we'd get up at five thirty in the morning so we could clean up and be prepared for when the workers came into the office the next day.

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Landes

Kitty, we're talking about the first day--April 5--that you all were sitting in at the old federal building in San Francisco. Describe that first afternoon and evening. Where were you staying?

Cone

There was one very large conference room that we occupied the entire time. The director's office we occupied that evening. The assistant director was named--I want to say his name was Bruce Lee, and I think that really was his name [chuckles]. He was very sympathetic to us. The director, I think, was not.

Landes

That's the assistant regional director?

Cone

Yes. The first night there was a great deal of people calling all over the country on the telephones because the phones were still on.

Landes

So you had access to the HEW phones.

Cone

Yes. And we were contacting ACCD, we were contacting--I think we were trying to talk to the demonstrators in the other buildings, but we basically ended up talking to people in the other cities. And we were calling the press. There was this buoyant, exuberant, victorious feeling shared by everybody. People didn't know what was going to happen, but we knew that we were there, and we had seized the building [laughs]. I think everybody was feeling extremely positive and powerful at that time. That evening, and for the next several evenings after that, Judy, Joni Breves, Jim Peachum, and the people who were the monitors--Bob Allemand; Mary Lou Breslin, who became ill and had to leave after the first few days; Jim Peachum, who was the head of the monitors; and Joni Breves. There was this sort of group--oh, and Ann Rosewater also went into the building with us and was there for the first few days. There was this sort of informal leadership, and I can't remember who else was involved. I need to think about it a little bit, at what point Ralph Abascal and Phil Neumark came from CRLA, at what point we had a more formal sort of elected leadership--but that was the group that went to Washington.

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So there was this informal group that consisted of Judy and me and more of the monitors, and we would meet and discuss how we were going to react if the police came in. Were we going to engage in passive resistance? Were we going to just go out? Looking back on it, it's hard to imagine what all we were discussing, but we spent a lot of time discussing how we would organize people when the police came in. In the beginning, we were sure that the police were going to come in. So that was one of our major concerns.

Settling In and Building a Community

Landes

Were you negotiating with people from the federal government regarding staying in that first night?

Cone

Yes.

Landes

What were the issues that were being negotiated with the federal government?

Cone

That they wanted us out and we weren't going to leave. That was basically it. Later there were other issues: whether people could leave, whether they could get back in, whether they were going to let the food in.

Landes

What food came in the first day?

Cone

I think people pretty much brought candy bars and things like that. I think the food didn't really start arriving until--maybe Delancey Street brought food; I don't remember.

Landes

So where did you sleep that first night?

Cone

I slept the same place every night. I slept in this closet off the main room--

Landes

Off that conference room?

Cone

Off that conference room. I'm trying to remember who I slept with. It was me and--I had to be turned over at night, so I think--my attendant was turning me the first few nights, and then somebody else was doing it. Debbie Stanley, this blind woman, began to do it at a certain point, and I was sleeping on those cushions that I had brought out of my van. I was actually probably more comfortable than a lot of people [laughs]. I

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remember I was wolfing down sleeping pills to get through the pain.

Landes

The pain from sleeping on a hard surface?

Cone

The pain from sleeping on the floor and from just sitting from five-thirty in the morning until sometimes three o'clock at night and getting like two and a half hours of lie-down sleep time. It just amazes me, the stamina that everybody had. Most people were sleeping on the floor in the big conference room, and then some people were sleeping in different offices--somebody would climb up over the transoms and go inside and unlock the door. Then people would go in and sleep in the offices. Judy was sleeping in the elevator. She had her own little private bedroom, and so did I. I remember there was a lot of card playing that went on. During down times, people would play cards. I don't recall ever having one minute of down time myself, personally. And there was a lot of singing. I've gotten off the track of what we did the first day.

Landes

What songs?

Cone

We sang a lot of freedom songs, like "This Little Light of Mine," and "Oh, Freedom," and "We Shall Overcome." A couple of people had brought their guitars: Jeff Moyers and Debbie Stanley. Debbie Stanley had a voice like an angel--a very, very powerful voice. We sang "Amazing Grace." Judy has a nice voice. Debbie had a nice voice. There were a couple of other people who had nice voices, but when we sang "Amazing Grace" we really sounded like a caterwauling batch, I must say [chuckles]. But the singing was something that kept up our morale and reminded us incessantly that we were a civil rights movement. There was always singing going on in the halls, and whenever the press came we began to sing too. We were real press animals; we were very attuned to what the press was thinking.

Educating the Press

Cone

Oh, I started to tell you--the press room, we took over this little side room of the assistant director's, and that was the press room. I think we used the xerox machine in there, as I recall. So every day we would watch the news--we had televisions. We would watch the news and listen to the news on the radio. We would go through the newspapers and we would see what kind of coverage we had gotten. In the beginning, it was "an army of crippled and deaf and dumb people went into the federal building."

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So we decided that we were going to have to educate the press about terminology. On day two we held a news conference and talked about terminology. I remember that we didn't like the term "crippled." We didn't like the term "deaf and dumb." We didn't single out particular reporters, although I can remember which ones used them, to this day. We would say, Well, we got coverage on this but it's focusing too much on the state of the demonstrators, so we want to make sure that the issues get out, and we would pick a particular issue.

Here's a concrete example. One day we were going to focus on why you need to have interpreters in hospitals. So we organized a news conference, and the press was just hungry for anything that they could use to add information to the story other than just the fact that we were there. So Dale Dahl spoke to the press about his personal experience when he broke his neck, that he was deaf, he broke his neck, he was in the hospital, there were no interpreters, he had no idea what was happening to himself, no one could communicate with him. There he was in the hospital, he didn't know whether he was going to get well, he didn't know why he couldn't feel, he couldn't communicate with his nurses.

Dale talked about this, and it was very compelling. We put out a news release that sort of explained the issue, so sometimes the press would pick up on what we were trying to get across, and other times something would happen like when Julian Bond came to visit us in the building. Julian Bond had been a leader in the civil rights movement, a young leader; he had been a leader in SNCC [Student Non-Violent Coordinating Committee] and SCLC [Southern Conference Leadership Council], and then had gone on to become a Georgia state legislator. He came to the building and met with us.

At one point Jesse Jackson came through and hailed what we were doing.

Landes

You mentioned earlier that some people in the press became involved very early on in covering and became very fascinated and connected to the story. Who were they?

Cone

The main one was Evan White, who at that time was working for Channel 7. I believe that Evan was assigned to the story the first day. He decided to create interest, and for his own personal purposes, I guess, he would spend the day in a wheelchair. He spent a day in a wheelchair, and he had this one cameraman that was with him the entire time, and he went around and he tried to navigate San Francisco. There weren't curb ramps, there was no accessible transit. He just experienced all the frustrations of being in a wheelchair when things are not

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accessible, and segregated. So he did a show on that, and then he kept covering the demonstration. Every day he covered the demonstration. Then when the decision was made to go to Washington, Evan convinced Channel 7 to send him. What is Channel 7? It must be ABC?

Landes

Yes.

Cone

One of the problems had been that the issue was not getting coverage in Washington. I think one of the reasons is that Califano had ties to The Washington Post; first of all, they did a very bad editorial about it, and then they just didn't cover it. One of our goals was to try to break into the Washington press, to try to put pressure on Carter and Califano. We were getting national press coverage, we were getting on the network news--not every day, but frequently enough we were making The New York Times.

Anyway, Evan and his cameraman went to Washington and they covered every single thing that happened.

Landes

Who were other people in the press?

Cone

I remember David Louie covered it. There was a woman, Linda Schacht. Carlton Goodlett covered it. I remember setting up an interview for Ron Washington with the Sun Reporter. The Black Panther party paper covered it. All the papers covered it; it was in the Chronicle and the Examiner every day, as far as I can remember, and it was on the network news every day. I don't know that any other reporter was as profoundly affected by it as Evan White.

I ran into Evan--I don't think he even remembered me [laughs]. I ran into him in 1984 or 1985 after I got back from another trip to Mexico, and I went up to him to say hello. I ran into him at Max's Opera Cafe. I said, "I don't know if you remember me from the sit-in." He said, "Of course. The sit-in was the most important story I ever covered in my life." I thought that was totally incredible.

Landes

And he's remained active as a supporter of the disability rights movement.

Cone

Yes. He's now at Channel 4 and Bay News. We're having this celebration of the twentieth anniversary of the 504 victory this year, and Evan has said that anything we want him to do he will do. He's written up a very compelling piece for the commemoration book. I'm sure he will cover it, and I'm sure he will speak if he's asked to, and he will give us ideas about how to attract

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other press coverage. He has remained a completely dedicated follower and supporter of the movement.

The Leadership Structure and Meetings

Landes

I'd like to talk some about the meetings that occurred inside the building during the sit-in. What were the issues that would get discussed? Were these larger meetings that would include all of the protestors or were they smaller committee meetings or both?

Cone

There was a whole set of levels of meetings. There were different types of meetings that took place. Whenever a big, major decision had to be made, like if we were going to send a contingent to Washington, D.C., or the fact that [Congressman] Philip Burton and [Congressman] George Miller, who were two powerful local congresspeople, were going to hold a congressional hearing in the building. What did we want to do outside? Or that there had been a bomb scare, and the FBI and the federal government was telling us to get out of the building because someone had said that they had planted a bomb, and how did we want to deal with it? We would discuss those issues in big meetings with everybody involved.

But the reality was that Judy and I and then this group of people like Joni Breves and Jim Peachum and Mary Jane Owens, we usually discussed issues before we presented them to the larger meetings. And Judy ran the big meetings. We would hammer out what we wanted our approach to be, and then Judy would present it. After meetings where we weren't sure if we had done the right thing or where Judy was afraid she'd come on too strong or something, she would like clutch on me and say, "Did I do okay? Was I too dictatorial?" Then I'd say, "No, no, you were fine. But open it up a little bit more." [laughs] So I was sort of like her manager or something in terms of style [laughs]. This is just basically my approach to democracy: everybody needs to be involved in making decisions, but usually genuine leadership will sort of float to the top. It usually represents different points of view that need to be talking to each other and present organized alternatives, or you can just have free-for-alls.

Landes

The smaller group was developing what you thought was a desirable strategy, and perhaps a couple of alternatives, and then presenting them to the larger group?

Cone

Yes, and I'm sure there was some dissatisfaction.

Landes

Were there disagreements that existed within your smaller group?

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Cone

No, not really. I think Judy and I may have had very, very minor differences over style that I thought she tended to not open the meetings up as much as I felt that they should have been. It was just a matter of--good Lord, we were all totally exhausted.

Landes

So in terms of strategy and tactics, there was not much disagreement within the--

Cone

No. We were very much in agreement.

Somebody who played an important role, and a very much behind-the-scenes role, was Pat Wright. Pat was running the Antioch program at CIL. She was there the whole time, and she is just a brilliant strategist. When there were issues going on, she would take Judy aside or take me aside and sort of get us away--particularly Judy--away from the whole group and offer suggestions and we could come in with a fresh approach.

I remember in Washington, D.C., one member of the S.F. contingent that went just sort of lost his mind. He just got wild. It was Larry Montoya. He decided he wanted to run out in the street and stop traffic. Remember, everybody was completely zonked, and people were on different medications and whatever. It was completely counterproductive ultra-leftist tactics that didn't have any relationship to what the objectives of the movement were. I mean, running out and stopping traffic in the middle of Connecticut Avenue doesn't do anything. What would be the point? And he would try to do it by himself.

We realized he was getting completely out of control, and we were trying to have a meeting to figure out how to deal with it. Pat took Judy aside and presented a very reasoned--we were all very tired--We need Larry to go back, and he can talk to the other demonstrators back in the building. So they worked out a way of getting him out of the way without making him feel bad and everybody feel like we were isolating this one individual.

Within the leadership itself, I don't think we ever had any really serious disagreements. We would talk things out--should we do this, should we do that, why don't we do this as well--that kind of thing. We tended to work very well together. Then there was this formal steering committee that was elected and that was the head of all the different committees. It met and made recommendations to the big meeting, as I recall.

Landes

Do you remember who the heads of some of these other committees were?

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Cone

I think Karen Parker and Kathy Smith were heading the fundraising committee, which became very important because we had to raise like $25,000 to get ourselves to Washington. It seemed like a huge amount of money in those days. There was the food committee --I don't remember who was the head of that. Connie Souci was still the head of the medics committee, I think.

Decisions on the Delegation to Washington, D.C.

Cone

One of the things that we did that I feel kind of ambivalent about was that when we decided that we were going to send a contingent to Washington, we had this election to elect a committee to choose the delegation. And the reason was that we wanted it to be representative, and we felt like if we voted just on the delegation itself we didn't know what we were going to get. We might not get a racially representative group, not all the different disabilities represented--we wanted a representative group. Of course Judy was elected to that committee, I was elected to the committee. Different people were elected to this committee, and we met and we chose a delegation which was a very good delegation.

It was Debbie Stanley, Denise [Darensbourg] from ARC, Joyce Jackson, Owen Fortney, Steve McClelland, Dennis Billups, Judy, me, Larry Montoya, and then there were some other people who went because they--Mary Jane Owen, I think. Then Lynette Taylor and Jadine Morello went to interpret. Hale Zukas. Bobbi LaNoue went to do attendant work. Hollynn Fuller was writing an article about it for Ms., so Hollynn went. Ron Washington was going for some other reason that had to do with--he was going to go testify before a committee or something, so he went by himself. Ralph Abascal and Phil and Jim Donald went; they were the lawyer contingent, and I remember they stayed in a hotel and we used to rib them mercilessly because we were sleeping in this uncomfortable church, in the pews, as I recall.

Anyway, what I started to say was that I feel like in some ways we took too much of the leadership with us to Washington.

Landes

You feel you left a vacuum back in San Francisco?

Cone

Yes and no. There was definitely a secondary layer of leadership, but we just kind of plopped it on them. It wasn't people who had been developed in the process, although a lot of people got very good experience.

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Landes

Who were some of the people in the secondary--

Cone

I remember that we very specifically took Ceci Weeks and Ray Uzeta aside and said, "You are now responsible for leading the sit-in here in the building." I think it was very, very hard because number one, they were removed from the scene of the action. The action moved to Washington essentially. They did a good job, but I think that Ceci particularly might have felt like this responsibility was just dumped on them. Ceci was quite young, and very smart and very articulate. Ray was quite competent too. They were good leaders, but I don't think they felt like they had been part of the organic process of being developed into leaders; they were just told, "It's now your responsibility. Here are all the committees. Run it." [laughs]

So not only had practically everybody who had been in the main leadership gone, but also the people who were left in the building were very tired. At least we got out of the building--those of us who went to Washington. We got some fresh air, rode on an airplane [laughs], went picketing all over town and carried out a whole series of very inspiring activities. But the people who were left back there were getting tireder and tireder and more and more strung-out. I think it wasn't so easy. And there were some people in the building who were left there who I think were real difficult and who caused unrest or something.

Landes

I'd like to go back a bit to the issue of how the decision was made to go to Washington in the first place. How did that come about?

Cone

I think we felt like--I don't remember. I don't know who originally thought of it. Probably Judy talking to people in Washington.

Landes

Was there concern that the sit-in was stalling, that there was no progress, that it needed a jumpstart, that it needed an infusion of new--

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Cone

For one thing, the activities of the task force were being reported to us as they were meeting. New issues were being addressed and developed by this task force that was reworking the regs. It seemed to us that the situation was going from bad to worse. That was one thing.

Landes

In what way was it going from bad to worse?

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Cone

There would be new issues. As I said, we were getting reports from the inside about what was going on. I guess we thought it was going from bad to worse when this representative of HEW came out to testify at the congressional hearing in the building that was run by Congressman Miller and Congressman Burton.

Landes

This congressional hearing was prior to your trip to Washington?

Cone

Yes.

Landes

Do you want to talk a bit about the congressional hearing?

Cone

Sure, I can, but I'll keep going with Washington. At one point, the representative from HEW talked about education for children. He actually said the words "separate but equal." That just lit a fire under everybody. Then he got up and just left the hearing, and it made Phil Burton so mad that Phil Burton chased him down the hall, and the guy locked himself in the room and Burton was kicking on the door saying, "Get out of there! Come out of there!" It was very emotional.

I think our feeling was that things weren't changing in Washington, that we needed to add some West Coast pressure. And the situation--

Landes

That you needed to add some West Coast pressure to the East Coast?

Cone

Yes. I think Frank and Eunice Fiorito--who was another one of the major leaders of ACCD--were doing the best that they could. But they had not been able to break into The Washington Post, they weren't getting any coverage, and we felt like if we came in as a contingent that we could bring a fresh force that could demand--with the moral authority of the sit-in behind us--to meet with the president, to meet with Califano, to meet with congressional leaders who had been involved in writing section 504, which is

exactly what we did. I would imagine that it was Judy who was the primary person involved in making that decision, but I can't remember, honestly.

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Pressuring the Administration in Washington

Landes

Kitty, we've been talking about the delegation that went to Washington, D.C., to create more pressure in Washington. Do you want to talk about the trip to Washington and how that went?

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Cone

I have some recollection that the guys from the Machinists' Union in some way helped to facilitate our travel arrangements; they might have helped us get some kind of discount on the air fare, although I'm not clear on that. I remember that these two guys from the machinists went with us on the airplane, and they were invaluable because it was a haul. There were a lot of us in wheelchairs, and we didn't have all that many people who were doing the attendant work, and everybody was helping each other. The person who was helping me, I still maintain that it's a woman named Debbie Stanley, but everyone tells me her name is really Debbie Norling. A blind woman, who just had a gorgeous, gorgeous voice, and she brought her guitar and used to sing to us when we were in the church in Washington. Anyway, we went on a plane, and when we got to Washington the machinists had hired a giant Ryder truck or U-Haul truck that had a lift on it.

One funny thing that happened to me is that I kept running into my family during the course of the sit-in.

Landes

In Washington?

Cone

Both in Washington and in San Francisco. My cousin and her family came out to visit me. Evidently I had been so caught up in the sit-in, they must have told me they were coming to visit me, [laughs] but I didn't call them and say, "Don't come; I'm in this building." I'm in the building, and of course there was very little communication, because there was only one pay phone that we got to use. One day my cousin shows up with her kids in the building. She had come from Washington, D.C. Well, she didn't get to spend very much time with me, needless to say; I was busy organizing. But I guess she must have told my aunt that I was in this sit-in. Then when we got to Dulles Airport, we were all sitting in a mobile lounge. They put us in our own mobile lounge --those are those lounges on wheels that go from the airplane over to the terminal. We had pulled up at the terminal, we were sitting there waiting for them to get our wheelchairs and stuff, and out comes my whole family. It was my aunt and uncle--this is the older generation--and various cousins who had been in St. Croix for some family business meeting.

Landes

It was purely accidental?

Cone

Purely accidental. How on earth could the entire older generation of my family show up at Dulles Airport and come traipsing out onto the mobile lounge? How they even knew we were out there on that mobile lounge is beyond me [laughs]. We were all pretty filthy dirty and exhausted, and they were all dressed up in their fancy traveling clothes. I was embarrassed that we were all so dirty, and I was embarrassed of my family that they looked like such

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fancy people [laughs]. They said, "Oh, Kitten Mitten, it's so nice that you've come to Washington," or something like that. I thought, "Well, that's the last I'll see of them." Which it wasn't.

Anyway, the machinists had hired this truck, so all of us got in the truck, and there were no windows in the truck. It was a hauling truck. The machinists and Ralph Abascal and Phil Neumark would do a lot of the loading in and out of the truck. And Olin Fortney, who was one of the deaf members of the contingent.

Landes

There were about fourteen people in the contingent?

Cone

I think there were about fourteen people who were chosen, but then some other people went along as well, so it was actually larger then fourteen. I was looking at a picture of it, and I had forgotten that Bruce Oka from San Francisco went. Ron Washington was going to Washington, D.C., for some other purpose, and he was there. Denise Darensbourg, who came from ARC, went. Two sign language interpreters went. Anyway, I don't recall that we had any other vehicle, so I think everybody was in the back of that truck. Everybody in wheelchairs and all the blind people and deaf people and the interpreters and the attendants. It was pitch dark in there.

Landes

It must have been very claustrophobic.

Cone

Well, it was funny. We never knew when we were going to be turning a corner or anything [chuckle]. We would turn a corner, and there were no tie-downs or anything, and we'd all kind of go "Whoa!" [laughs] But it was very effective. It was an effective way of getting us all around. We traveled as kind of a mobile wedge or something.

Landes

What did you do that first evening that you got to Washington?

Cone

As I recall, we really didn't sleep that night on the airplane. I think we went overnight on the airplane. We got into Washington, we got settled, and we had a meeting in the church.

Landes

What church is that?

Cone

I'll find out the name of it, but it was a church near Dupont Circle.

Landes

This was a church that was supporting the sit-in?

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Cone

Yes, and I don't remember who arranged for the church. In any case, they allowed us to stay there. So some of the people slept in the pews, and some of us slept where they have the coffee receptions after church services. We slept in a big room, again on the floor. At this point, Debbie Stanley began to be my attendant. It was kind of neat because I would guide her, and she would take me to the bathroom and help me get dressed and get me up and down off the floor. Actually, I think it took a couple of people to get us up and down off the floors.

We had this meeting, and I always thought this was Frank Bowe's idea until I read an article where he said that he was distressed that we had gone and picketed Califano's house. So I guess it was actually Ralph Abascal's idea. Ralph says, "Why don't we go picket Califano's house?" And so we say, "Great idea," so they get out the phone book and they look up the address, and it's 25-something-something Springland Lane. And I go, "Oh, my God," because I know that Springland Lane is a street that's one block long--it's a cul-de-sac--and I have, living on that street, my great aunt, who was like my grandmother--I told you about that earlier: she had married my grandfather. Actually she had died, and her house--my cousin, Jimmy, and his wife and kids lived on that street. Jimmy had just retired from being a general in the army. I think he still thought like a general. Then my great-aunt, his mother and father--who was also a general in the army [chuckles]--lived up the street. It turned out that they lived literally directly in front of Califano's house. To get to Califano's house, you had to kind of go around Aunt Mary's house.

We go out, and we sat there with our candles, and we very softly sang hymns and freedom songs or something, and just sat there with our candles. Then it was very early in the morning, and what happens but there goes my cousin Jimmy jogging past--the younger one. He sees us there, and he sees me, and he says, "A prayer service. I will join you," or something like that [laughs]. He comes over and he says, "This is really lovely. You're having a prayer service." [laughs] So I just keep my mouth shut and pray for him to go away. He left, and--

Landes

So you really did literally continue to run into your family.

Cone

The next time we went out to have a vigil in front of Califano's house it was in the evening. My cousin was out there, and when they open the truck I see my cousin Jimmy out there talking to the news reporters, and he's saying, "This is not Califano's house; this is my mother's house, and she's ninety years old and she's in a wheelchair, and she hasn't had a wink of sleep all night! What are these people doing?" I was so freaked out I sat in the truck

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with a blanket over my head while the other people got out [laughs].

Landes

Did you ever meet Califano out there?

Cone

No. He always slipped out the back door. This was a tactic of ours: the Carter administration was calling itself the Open Door Administration. We attempted to utilize tactics that would either force them to come out the front door and meet with us and be confronted by us, or else would force them to go out the back door. Numbers of times when we were talking to the press we would say, "This is not an Open Door Administration; they keep going out the back door."

Landes

I've read that you picketed Carter's church, and he slipped out the back door that Sunday.

Cone

That's right, he did. He didn't even look at the line of picketers as he went by; he just turned his head, but Rosalyn Carter made a little wave. We also went to the Press Club, because Califano was giving a talk. We were picketing outside in the front. Mostly we were just sitting there with big signs saying, "Sign 504 now, Califano." So Califano gave his talk, and Evan White, who was at that time working at Channel 7, went in because he had press credentials. I believe he asked Califano some question about the 504 regs, and I think Califano bristled. But Evan White and his cameraman stayed with the demonstrators the entire time that we were in Washington. After Califano was finished, I think he ended up in the same elevator with Evan going down, and he went down into the basement and then went out the back basement door of the Press Club so he wouldn't have to be confronted by us. Also, by this time we were beginning to get news coverage.

The Organizing Strategy of the Washington Delegation

Landes

Kitty, once you got to Washington, what was your strategy for mobilizing support for the signing of the 504 regulations?

Cone

One of the first things that we did was to make contact with Sigi Shapiro and this other woman whose name I can't remember from the Philadelphia Disabled in Action--I think that was the name of their group--they were very active. I don't remember if they got to Washington at the same time we did or if we contacted them and said to come down here. They might have been down there working with Frank Bowe and Eunice Fiorito before we got there.

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We had these meetings in the church every evening, and we continued to have our regular mass meetings where we would decide things. We had a number of different tactics that we were utilizing. One was that the contingent--primarily the California contingent but sometimes with the addition of Frank and Eunice and the people from Philadelphia and sometimes pretty much by itself--were just tagging around trying to get press coverage. We were also attempting to set up meetings with people in the Congress who we thought were important to the process, and we were attempting to get a meeting with Carter or somebody high up in the White House to try to get him to force Califano to sign the regs as we wanted them and to get rid of all these issues that had been surfacing.

And another thing that we were doing was organizing larger demonstrations. I can't remember if we had one or two. We organized one at Lafayette Park across from the White House. A stage was built, and I remember that congressmen came and spoke.

Landes

What congresspeople?

Cone

I'm sure George Miller. I remember that Judy spoke, Debbie Kaplan spoke, Eunice Fiorito spoke, and I think Brad Lomax from the Black Panthers spoke. I think Joyce Jackson might have spoken. I think Debbie Stanley sang. I know I spoke. Ron Kovic, the Vietnam vet --spoke. He was staying in the church with us by this time. Some other people were staying in the church too. That demonstration we organized out of Machinists International Headquarters.

Landes

Let's talk about the demonstration, and then we can talk about the machinists.

Cone

Okay. I remember being dispatched over to the machinists to work on organizing the demonstration, and I was working with this woman from Philadelphia. We were contacting all these different organizations and telling them to come and bring as many people as they could to this demonstration.

Landes

Organizations in Washington?

Cone

All around the area, from Virginia, Maryland, Pennsylvania.

Landes

And who was doing this? You?

Cone

I was doing it along with this woman from Philadelphia.

Landes

And how did you go about targeting specific organizations?

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Cone

Well, ACCD of course had lists, and somehow or other we were just given lists, I'm sure. I think that we called the congressional offices to line up the speakers. I don't remember what Judy was doing, but I don't think she was there. I think she was probably up on the Hill talking to congressional people. But I'm sure that she and I and Frank Bowe and Eunice and all of us were collaborating about who was going to be speaking at the demonstration.

There was a certain amount of friction between Frank Bowe and us, because I think that he considered us sort of a raggle-taggle batch of pretty wild-eyed people. I think he felt that they did things in Washington differently than we did them in California, that Washington had a certain protocol of how you brought about change. I was recently talking to John Wodatch from the Department of Justice, and he was saying--of course, he was very involved on the inside and I think was involved in feeding us information.

Landes

When you say "from the inside," because he was with the Department of Justice at that time?

Cone

I think he was working within the Office for Civil Rights of HEW at the time, and I think he probably had worked on the original regulations. Anyway, this is not too long ago. And we started talking about how we were building this anniversary of the 504 sit-in, and he was reminiscing about how Eunice Fiorito staged what he considered to have been one of the most ladylike protests he had ever seen. Eunice is blind, and Eunice looks like the Greek goddess Hera or Juno or whatever you call her. I mean, that's how I imagine the Greek goddess Juno looking. Very tall, very imposing, and she speaks very clearly and enunciates perfectly and wore suits. She was a lady. Evidently, Eunice went in to have tea with, I think, Califano. She said, "Mr. Secretary, I won't be able to leave until you give me some kind of assurance that you're going to sign the regulations." And she sat there and sat there and sat there. At some point, somehow or other, they got Eunice out of the office [laughs]. I can just imagine that.

Lobbying Senators Williams and Cranston, and White House Staffer Stuart Eizenstat

Cone

We were trying to line up congressional support, and in particular we were trying to line up [Senators] Harrison Williams and Alan Cranston, who had been two of the original sponsors of the legislation to say that they were in agreement with the

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regulations that we wanted to be signed--the ones that had been on Califano's desk when he came into office--and that they did not agree with all of these changes.

We met with Harrison Williams, and Harrison Williams was fine. Judy had worked in his office for about a year, and I think that she had indoctrinated him and his staff too, probably. But that meeting happened very fast after we got to Washington, and I remember that we were so tired that Hale fell asleep during the meeting. Then we also had a meeting with Alan Cranston. I've read somewhere that Cranston was supporting the demonstration, but Cranston was a very, very political person, and he was very powerful at the time. I always thought that he was about the most powerful person in the Senate at that time. What was he? What is the chief honcho, the whip, in the Senate?

Landes

I think he was the whip, which would have been probably second in command.

Cone

Yes. He wasn't majority leader. Anyway, he was a good Democrat. So we had this meeting with Alan Cranston with our contingent and Frank Bowe. There were just banks of television cameras. Cranston had the list of changes that were being proposed by HEW at that point. The list was growing, but there were like ten or eleven main points, and I think I've already gone over them. One of them was consortium of universities, so that in a particular area they didn't all have to become accessible. Another one was how far they had to go on making new construction accessible. Another one was renovation of existing buildings. And another one was whether or not drug addicts and alcoholics would be included in the definition of people with disabilities. They were all very critical issues.

Cranston was going over the issues one by one. One by one, a different person in the contingent responded to him and answered the objections. He would say, "What about this problem, that if you include drug addicts and alcoholics, then x, y, and z will happen." Different people in the contingent answered every single one of his issues that he raised, and answered it very thoroughly and very persuasively. Then he would go on to the next one. All of it was being taped by the national media. Then at the end of it, Frank Bowe--Frank Bowe was so eloquent--made a little wrap-up speech, and he said, "Senator, we're not even second-class citizens. We're third-class citizens." And we all started to cry [laughs]. I don't know if we started to cry because Frank was so eloquent, or all of a sudden it hit us we're third-class citizens. Mostly, I think we were just completely exhausted. We were just wrung out. We hadn't gotten any sleep. And Cranston got behind

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us. Now I thought that we were changing his mind at that time, and I think that my recollection is correct.

Landes

Your sense is that he was wavering on a lot of the key issues, and that it was your meeting that really firmed up his support?

Cone

That was my impression. I think he undoubtedly was saying, "These are my people from California, and they need a hearing," or something like that. But I don't think he was convinced to come out and take a public stand in our favor until that meeting.

Landes

So that was a critical meeting when you got his public support.

Cone

I think it was. Then finally we were trying and trying to get a meeting at the White House, and there were a lot of people on the inside--staffers and congressional representatives and people in power--who were on our side and were attempting to get us a meeting at the White House. We finally got a meeting at the White House with Stu [Stuart] Eizenstat, who must have been Carter's chief of staff or general counsel. I don't remember who he was; he was very powerful. I'm going to look that up and fill it in.

After we had that meeting we were fairly certain that the regulations were going to get signed as close to how we wanted them as possible.

Landes

Were you involved in that meeting with Stuart Eizenstat?

Cone

Yes.

Landes

What happened at that meeting? How did he respond to you?

Cone

I think mostly he just listened.

Landes

Did you get a sense that he was supportive? Or was he simply a political animal reporting to his superiors, including the President?

Cone

That's how I felt. But we all talked again. I don't remember the meeting very well at all. But I think we thought it went so well that we were fairly certain that we were going to win.

Landes

Was this late in your trip to Washington?

Cone

Yes. I don't remember how long we were there actually, but I think it was. And I think after it was over, after that meeting, was when most of the contingent went back too. Everybody in the contingent went back to San Francisco except Judy. And she wanted to stay and be there for the signing, and she was concerned about

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implementation. I know she says that she was sitting in a bar and she was watching something on television. I think she said she saw the victory march on television--the victory march that took place in San Francisco--and she felt separate from the group, because it probably was a week later.

Landes

Yes. We'll talk about that later. Is there more you'd like to say about the meetings that you had with key people? You've talked about Harrison Williams and Alan Cranston and Stuart Eizenstat at the White House.

Cone

Those were the main meetings.

The Demonstration in Lafayette Park

Landes

Earlier you were talking about the demonstration at Lafayette Park and the organizing of that demonstration. Is there more you'd like to say about the organizing of that demonstration?

Cone

I remember that I was surprised that the constituency that showed up at the demonstration in Washington was very different from the composition of the people in the sit-in.

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Cone

I remember realizing that it was much harder to organize in that area because there wasn't transportation. A lot of people arrived in vans from group homes, I think. There weren't a lot of people in motorized wheelchairs who lived close to a transportation area, who had services, who were living independently in the community--people with physical disabilities--like we had in the Bay Area. When we were calling around to the different organizations, and I was asking somebody, "What's this group? And what's that group?" I realized that there was something akin to an independent living center--but it wasn't anything like the CIL in Berkeley--and that we weren't going to find a whole lot of people like ourselves. It was a very different group of people. I know that a lot of the demonstrators were deaf students from Gallaudet at this Washington, D.C., demonstration and at the [earlier] sit-in that had been starved out at the HEW building. So I think they must have come out to the demonstration as well. It was real different.

Landes

In what other ways?

Cone

A lot of our contingent spoke at the rally, if that says anything.

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Landes

Earlier you mentioned that there were a lot of developmentally disabled people that attended the rally. Did that surprise you?

Cone

Yes. I thought it was really neat. A number of people came in groups, and they had been organized by somebody who arranged the transportation and made sure they got there. To a certain extent we did that here, but it was like "Let's get a van of people and get over there" or "Let's get on the BART and go over there." So it was a very different kind of thing. I don't think the Metro [the Washington subway system] was accessible in those days; I'm pretty sure it was not. That whole Washington metropolitan area is very, very spread out; it's a metropolis, that area, but it's very hard to get in front of the White House if you had a disability--or it was in those days.

Landes

Is there anything else you want to say about the trip to Washington?

Cone

Well, I didn't mention that the machinists gave a banquet for us.

Landes

At the end of your trip?

Cone

No, sort of towards the beginning, and it was very nice. They had this dinner, and I remember it seemed like one of the best meals that we had had for a while. We went up in the front of the meeting, and I think we must have been singing. I've seen a picture that appeared in their magazine, and we all have our mouths kind of open, so we must have been singing freedom songs or something. Afterwards, they gave us a meeting room upstairs, and we strategized. I remember that Bobbi LaNoue fell asleep--we were all so tired. Anyway, Bobbi fell asleep, and Hale--who she was interpreting for--started poking her with his wand, trying to wake her up, and she was snoring softly. People just were falling asleep all over the place because we were getting very little sleep.

Oh, this is something about Judy Heumann I'd like to say. One of the things about Judy that astonished me: the woman has the stamina of a bulldog. She really, really has got incredible physical drive that nobody else had. There were times when I just simply could not function, and Judy not only could get up and participate and lead, but she didn't even appear fatigued. It just amazed me. I couldn't understand how she could keep going. She's still like that today.

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Returning to San Francisco, Leaving the Federal Building, and the Victory Celebration

Landes

What prompted your return to San Francisco? Was it that you felt that you had completed your mission in Washington?

Cone

We had some assurance that the regs were going to be signed, and they were going to be signed as we wanted them, for the most part --or we probably would not have gone back.

Landes

What do you remember about the return trip to San Francisco?

Cone

I remember only two things. I remember that the pressure in the cabin was so bad that Bobbi LaNoue started to cry because her ears hurt so badly, and that when we got to the airport I did interviews with the press about what we had accomplished. Then we came back to the building. When we got back to the building, I realized that the people in the building were very glad to have us back because I think that they had been feeling a little bit cut off, although we were calling them from Washington every day and giving them a report. They would report to the larger group what was going on. But some people were really getting kind of stir crazy. It was very shortly thereafter that the regulations were signed--very shortly after we got back.

Landes

Do you have any other memories of the period inside the building prior to the signing of the regulations?

Cone

Not really. After the regulations were signed, everyone was absolutely jubilant. We got a call, and we held a news conference, and we talked about how happy and proud we were that for the first time there was a federal civil rights law that was going to be implemented covering people with disabilities and that we felt that we had been victorious.

And then afterwards, we had one of our meetings to talk about how we were going to leave the building, and at that meeting there was a group of people who said that they did not want to leave the building. It's kind of like they felt the building was their home. They said they wanted to stay there to make sure that the regulations were going to be implemented and enforced. This was something of a public relations disaster. The press never knew about it, but we had, I think, several meetings where we talked about this. It was a small group of people.

Landes

Do you remember who was involved?

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Cone

Yes, but I don't want to say [laughs]. The vast majority of people wanted to have a victory rally and get out of there. I think the way we resolved it was we decided that it would be better to have a victory rally--I think our victory rally might have been on a Saturday. But the thing that we said to the press while we were carrying out these discussions and trying to bring people around--it couldn't have been more than eight people maximum out of the whole group in the building--but everyone was very, very tired and didn't want to have any more discussions. So it was hard to figure out a strategy where we could get everybody out of the building. I mean, if we left eight people in, they would have been arrested. There would have been no reason to be sitting in the building at that point.

So the way we worked it out was we told the press that we had made a mess, not intending to, but because we had been in there so long, and we wanted to really clean up after ourselves and get everything cleaned so we could leave the HEW building as it had been. We went to HEW, and we asked for a small room, to have an office, and they gave it to us. We said that that was going to be like an organizing office. I remember that Linda Gill wanted to staff the office. Linda Gill and a couple of other people. And so they did. We knew that that would fizzle out, and it did fizzle out.

Landes

You mean they staffed the office after everybody left?

Cone

Yes. It was a little tiny office.

Landes

So they would leave and come back?

Cone

Yes. I don't think it lasted for more than a week or so. We planned this victory rally, and it was something else. All the media was there, all our supporters came out, and we marched out of the rally and down through the U.N. Plaza--I think just to the end of U.N. Plaza; it wasn't very far--and held a rally. It was just the most spirited, victorious--

Landes

This was on a Saturday noon?

Cone

I think it was a Saturday. You can see tapes of people coming out of the building, and they are so happy, and everybody's carrying their sleeping bag. It was probably one of the highest moments in many of our lives.

Landes

Is that true for you?

Cone

Oh, yes. I had been involved in many demonstrations, but they had never effected such concrete, positive results.

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Kitty's View of the Meaning of the 504 Victory

Landes

You were elated.

Cone

Yes. I would say that there were victories on many levels that came out of the sit-in. For one thing, we say it was the public birth of the disability civil rights movement. It was. There had been actions in particular parts of the country, but this was a nationwide event. It was federal civil rights coverage for people all over the country. The eyes of the nation had been on the people in the sit-in and then the contingent in Washington, so there had been a lot of national news coverage. So for the first time, disability really was looked at as an issue of civil rights rather than as an issue of charity and rehabilitation at the best, pity at the worst. At that time, the prevailing image of disability was the telethon image.

Landes

The Jerry Lewis Telethon?

Cone

The Jerry Lewis Telethon, where you feel sorry for these people, and you're just on the verge of tears, and you give more money and more money, and it's all hyped up. People are either about to get cured or else they're about to die. There had been some pretty positive coverage of activities in the Bay Area, probably also in the New York area, but in general people around the country--including people with disabilities--didn't think of themselves--ourselves--as a disenfranchised minority with a legitimate claim to civil rights protection. I think that also many of us came to understand that problems we had faced individually and that we had perceived as our own personal problems--such as inability to get into inaccessible buildings, or go to the university of our choice, or get around because of no transportation, or get a job-weren't our personal problems, they were societal ones.

We now believed there was a societal responsibility to ensure our ability to participate equally--that society had a responsibility to provide transportation that we could use, to provide interpreters in health care settings so that a deaf person could understand what was happening to himself in the hospital, to provide materials for blind students so that they could go to school and have access to the same materials anybody else had.

So once people began absorbing that--and people absorbed it very intensely because they were in the building surrounded by this community of people and reinforcing each other--people's image of themselves changed, and people felt so proud of themselves. I'm trying to remember who it was--I think it was Hollynn Fuller--Hollynn must be slightly younger than I am, and

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she still looks like she could be a cheerleader. She's sort of the traditional beautiful woman who wears high heels and has a lovely face and is so ladylike. I think Hollynn Fuller said to me, "That was such a pivotal time in my life. For the first time I felt okay about myself as a disabled person." Many people said exactly the same kind of thing. People who were involved in the sit-in really were transformed. We did a good job, I think, also of linking up with the other civil rights constituencies--with the women's groups, with the NAACP, with the gay groups. That was something that was then carried on in the future as other laws were introduced and debated and passed in Congress, that the disability community was part of the overall civil rights community and a lobbying force in Washington.

The critical thing about Section 504 and the victory, of course, was that for the first time we had real civil rights protection. It was never enforced the way that it should have been, and I think that a lot of the requirements of Section 504 never became a reality until the Americans with Disabilities Act.

Landes

Which was passed later in--

Cone

In 1990. But the key principles that were embodied in Section 504, like reasonable accommodation, undue hardship, definition of disability--those kinds of concepts that were laid out in the regulations and most basically the concept of people with disabilities as a group deserving of civil rights protection, deserving of protection against discrimination, was the basis for all the legislation that followed over the next couple of decades.

Landes

Any memories of the victory celebration itself that you haven't mentioned? Were you on the program?

Cone

Yes. One of the things that happened to me during the sit-in that went away afterwards and didn't exist before, was that I've always been a fairly good public speaker, a speechgiver, so to speak. I can remember that once I was at a very big rally that I think Daniel Ellsberg and Joan Baez and a whole bunch of people spoke--it was around the Iraq war. I had been preparing my speech by reading the newspaper for a week in advance. I had written it out and fine-tuned it and practiced it, and I remember looking back and I was the only person who talked about the Kurdish refugees and then that became the big issue after the war. Afterwards, somebody came up to me and said, "You were the only person who really moved me." So I think I am a good speechmaker--or I was. I'm too tired and old for it now.

I learned that in the SWP; I don't know how you learn it, but it's the lessons of where we go from here and also something

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that's sort of human and tugs at your heartstrings--that kind of thing. But I've always, always, written my speeches out beforehand--both before and after the sit-in. During the sit-in, I was so juiced on adrenalin that I would just get up and make speeches that were completely straight from the heart. I remember that I gave a speech that everybody loved--

Landes

At the victory rally?

Cone

Yes. And I heard bits of it at that 504 anniversary where I was just screaming, "We won! We won!" or something like that [chuckles]. It wasn't something that I prepared in advance; it was just something that I got out there--well, I prepared part of it in advance--I got out there, and you know, you're so interactive with your people at that point that--it must have been an incredibly good speech or else it was symbolic to people, because a lot of people remembered it. Somebody told me later that Steven Klein, who I think really sacrificed his health--he had MS--I think that the stress of being in the building caused both him and Brad Lomax to have pretty severe exacerbations of their MS. Somebody told me later, "Steven Klein plays your speech; he recorded your speech and plays it every single day." I thought, "Good Lord."

I remember that it was tremendously--this sounds very egotistical--it was such a beautiful sight, because there was just a rainbow of all kinds of people of every race and disability. Everybody felt such feelings of love for each other for the most part. There were some antagonisms that had developed, but for the most part people just loved their comrades from the building and didn't want to be separated. It was so nice to be outside in the sunlight. I had been outside, because I had been to Washington, but a lot of these people hadn't been outside the building for almost a month. Everybody was so happy. The pictures I've seen of the march coming out of the building are so moving.

Landes

Who else was in the program?

Cone

I don't remember. I think Erika Huggins from the Black Panther party. That's all I can remember.

The Congressional Hearing During the Sit-in

Landes

Kitty, some time ago you mentioned the congressional hearing inside the building prior to the trip to Washington. We haven't talked about that much. How did that get arranged? What was the

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thinking behind having a congressional hearing inside the building?

Cone

Somebody contacted George Miller, who was the congressman from Contra Costa County and who was very interested. He was always very interested in children's issues, and he was involved in P.L. 94-142, which was the Education for Handicapped Children Act that was passed in 1975. George was very interested in disability. I can't remember who contacted him. I'm thinking that it might have been Ed Roberts or Phil Neumark. I think George contacted Phil Burton, who was the congressman from San Francisco. It was showmanship on one hand, but it also was a very effective way to get the issues out and into the Congressional Record and get HEW to respond and to get the voice of the disability community.

Landes

That was an official congressional hearing?

Cone

Yes. I think it might have been an oversight hearing. I don't know. The regulations had gone through all these permutations. There had been a suit filed to try to get them issued, they had been sent to Congress and sent back. I guess the focus of the congressional hearing was, "What is HEW considering doing, and why are they not issuing those regulations?" There were a whole number of speakers. Debbie Kaplan, who I think at that time was working with Nader's group in Washington, D.C., came out for it. Ed Roberts, who was the head of the Department of Rehabilitation, testified. And I think the focus of his remarks probably was, "If we don't have nondiscrimination laws, rehabilitation cannot really be effective." But he also talked about the dehumanization of not having protections.

Judy Heumann spoke, and there had been this original list of issues that HEW was considering, that I've talked about. The list of issues was growing. At one point, the man HEW sent out, some sacrificial lamb [laughs] named Gene Eidenberg, suggested separate but equal classes for students with disabilities. I don't know what his position in HEW was, if he was an undersecretary of some sort, or if he was just a small, low-level bureaucrat. I was at the beginning of the congressional hearing, but there was a rally outside at the same time the congressional hearing was going on that I was sent out to speak at. The guards would let me go in and out--they would let some people go in and out of the building. By this time, the guards had sort of been won over, I think. But I was there when the guy said "separate but equal," because I remember talking about it in my speech at the rally. He was responding to some question from Judy Heumann, I think, and he said something about, "Well, it might have to be separate, but we'll make sure it's equal." Something like that. It was just so bad, that everyone was astonished.

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Landes

It was like a bombshell?

Cone

Yes. It electrified the room. And Judy said something to the effect of "You cannot imagine how horrible it makes us feel to hear you say 'separate but equal'." She talked about Brown v. Board of Education and just made mincemeat out of this man, who then got up and ran away. I believe I talked about that earlier.

So the congressional hearing got a lot of play. The thing that got the most play in the media was Phil Burton crying. Phil Burton was very overcome emotionally, and he was so mad at this guy from HEW that he ran down the hall and kicked on the door, trying to make him come out. So the congressional hearing got a lot of play in the media; it was very good.

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VII Organizing to Implement 504

Working to Make Public Transit More Accessible

Landes

Kitty, after the 504 sit-in ended in San Francisco, what was it like going back to the Center for Independent Living? What did you get involved in? What was the spirit there?

Cone

Everyone of course was feeling extremely empowered by the sit-in, and it certainly gave new juice to the Community Affairs Department. I did not, of course, go back to the Attendant Referral Department; someone had taken my job. So I went back into the Community Affairs Department and worked primarily with Hale Zukas.

The hot issue of the day was transit. As I mentioned before, there was a suit that had been filed against AC Transit. One of the things that I got involved in was going to AC Transit board meetings, being involved in the negotiations for the settlement. The board finally adopted a policy of accessibility which of course they had to do, because the suit was going on, and they lost. So AC began to implement a policy of accessibility, and they were purchasing accessible buses. I worked, as did Hale, on an advisory committee that was actually an extremely effective committee.

Landes

What was the name of the advisory committee?

Cone

I think it was called AC Transit Accessible Services Advisory Committee. We were involved in reviewing policies and procedures regarding accessibility from the training program for the drivers to the amount of maintenance that would be done. On paper it all looked very good.

One of the things that was fun was that we developed a training film for the drivers; I was in charge of casting, because

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we had a lot of people around CIL. There were also seniors on the committee. This film won the equivalent of an Oscar for industrial films; it was really, really a good film. It showed how you were supposed to get on the bus, what the driver was supposed to do--

Landes

Did the film have a name?

Cone

"Riding Together."

Landes

What was the time period? Are we talking prior to the 504 sit-in or afterwards?

Cone

By the time the film was being made, the 504 Department of Transportation regulations had come out.

Landes

They came out when?

Cone

In 1978. So this went on over a long period of time, and I'll just finish up with AC Transit.

Unfortunately, the whole agency was having managerial problems, and they had numbers of general managers who were hired and fired. The woman who ran the accessible services component was let go when one of the general managers was fired, and we had a big protest at the board meeting.

Landes

What was her name?

Cone

Her name was Carol Weinstein. She was very good. She was very committed to the community and was very good at working with people and incorporating their ideas and enthusiastically embraced the whole thing and later went on to do some consulting when the Portland light rail system was being put in, and she began to do independent transit consulting, I think. She's still around the community today; I think she's one of the chairs of the Friends of CIL.

In any case, after Carol was let go, Carol wrote up a report, a scathing analysis of their failure to hire enough mechanics. She did an analysis of how many mechanics would be required--special mechanics who knew about the lifts, who could maintain the lifts and repair them. I think the report called for sixteen, and they had one [laughs]. So that was a very big problem, that the system never really worked very well after the lifts had been out on the road for a while, because they didn't have a good maintenance program.

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Because there was so much high-level turnover, the agency as a whole was demoralized, and there was never serious commitment to making all parts of the program work. They didn't cycle the lifts in the yard before taking the buses out to know they were running; they didn't have the parts; they didn't train the new drivers well or reward the ones who were courteous to passengers with disabilities.

It's been touch and go over the years as a result of that. That actually was very good experience for me, having hands-on involvement in the development of a program.

Landes

Who else was on the advisory committee with you?

Cone

Kathleen Lankowski from United Cerebral Palsy. Harry--I can't remember his name; I think he was a longshoreman who was representing a senior group. A wonderful lady named Mary, who was from the Volunteer Bureau of Alameda County, but she was a senior. Hale. I can't remember who else. It wasn't a real big committee, but it was very effective.

Landes

So this was an important step for you?

Cone

Yes, because later when I went on to lobby in Washington, I was familiar with what components are necessary to make an accessibility program work. I really understood the importance of training the drivers. I really understood that if you removed a national mandate for accessibility, there would not be the appropriate research and development into making the lifts better, that there wouldn't be the kind of collaboration between transit authorities that goes on around any other aspect of transit. They get together in their conferences, and they have special workshops.

I had to sit in meetings when I was later lobbying. When there was an effort to really tear the guts out of the Department of Transportation 504 regulations, I was able to sit in meetings and actually know what I was talking about, which was helpful because at that time you had people who came from the transit world who were like these crew-cutted guys in suits who were transit people, and the people from the disability side who understood rehabilitation and disability rights. These were two worlds that had never come up against each other or attempted to talk to each other. I'm not saying I was any great lobbyist; I don't think I was.

Landes

You knew the issue well.

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Cone

I knew the issue inside and out.

About this time Proposition 13 was passed [in California], and that was the proposition that drastically cut back the property taxes. Its effects have sort of trickled down, but in the first couple of years there were real cuts in the services that were being delivered by Alameda County. I was asked to get involved in a coalition to put pressure on the Board of Supervisors. I believe I said before that one of my problems is because I'm a quick learner, that I would be given an issue, then asked to go and speak at a hearing or speak to a board meeting or give a speech at a rally or organize people around it. It would be over and done with, and I would move on to something else. That's why I loved dealing with transportation. In the meantime I was also doing other things that came up.

Landes

Was there a name for the Proposition 13 coalition?

Cone

There was. I'll have to try to dig that up.

The Department of Transportation Regulations: Backlash from the Transit Agencies

Cone

In 1978 two things happened that were kind of important in the transportation field. One was that the DOT 504 regs came out.

Landes

How did you feel about them when you read them? Did you feel that they were adequate?

Cone

We didn't. We thought there were some problems, but we also thought it was the best we were going to get. We felt like we needed to point out the problems, because we knew that the other side--the American Public Transit Association, APTA, which is the trade association for all the transit agencies--was going to be howling to the rooftops that this was absolutely impossible and so costly and that they couldn't do it. They did indeed do all of that. We had a news conference, I think, and made some remarks about the regs.

But then we hunkered down to start defending them. They provided a lot of what actually was accomplished by the Americans with Disabilities Act, because they ended up getting overturned in court, ultimately. But they provided for accessibility on buses, and the way that was to be accomplished was that transit operators were to purchase only accessible buses starting from the date of

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issue of the regs. If they didn't have 50 percent of their peak fleet accessible after three years had passed, I believe it was, then they were to start providing paratransit. They had ten years to have the whole fleet be accessible. For rapid rail systems like BART and the Washington, D.C., Metro, there was a phase-in period of time for putting in elevators in the stations.

One of the things that was very difficult, which there was a lot of debate around, was old systems like the New York subway and the Chicago El--they absolutely swore they could not do that. The 504 regulations required that over a twenty-five-year period--it was a very long period of time--that key stations be identified, at the end of a line or at a transfer point, and that those be made accessible by elevators. Then there would be parallel bus service between those key stations that would drop people off. It was a big deal because New York is so enormous, and there was so little way to get around.

Light rail systems, as they were constructed, were to be made accessible, and I think there was some provision for retrofit. But I think later on there was some provision that there needed to be two manufacturers of lifts for trolleys. This comes to mind because I also became involved, after the 504 regs were out, in trying to pressure Muni. That was interesting, because--

Landes

Municipal Railway of San Francisco?

Cone

Yes. There really weren't very many activists in San Francisco. The Muni, of course, is the hub for many systems that go into San Francisco: BART, SamTrans, Golden Gate [Transit] and AC [Transit]. The Public Utilities Commission, which was responsible for Muni operations--

Landes

The San Francisco Public Utilities Commission?

Cone

Yes. They tended to just rubberstamp anything that the general manager, Richard Sklar, would ask for. Muni was going to purchase some more trolley buses. You know, Muni has those electric trolley buses. I can remember being at a Public Utilities Commission meeting, where Pat Piras, who at the time was working for the Metropolitan Transportation Commission, was feeding me this information. She said, "You can have authority, because you can say that Muni is the hub," because there really were not any San Francisco activists who were interested in taking on this issue with the exception of Paul Goodlataw, who was the head of the Indoor Sports Club. He was very actively involved in American

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Indian activities. I don't think he really wanted to tackle Dick Sklar--I mean, this was complex transit stuff.

Anyway, your average bus lasts about ten years--or fifteen years if it was AC Transit; their buses lasted longer because they had really good maintenance. But those trolley buses last twenty-five years. We were trying to get Muni to retrofit some of their trolley buses because they weren't going to be purchasing any buses for a long time because they had these buses that they had just purchased and they were going to be lasting for a long time. Dick Sklar said, "Well, there's this provision in the mass transit bill that says that if there aren't more than two manufacturers--until the technology is developed for effective trolley lifts, then no retrofitting is required." But these were not trolleys; these were rubber-tire buses.

Landes

They were run by electricity?

Cone

They were run by electricity. So he was absolutely twisting and lying [laughs]. I can remember getting up and saying that lift equipment absolutely was available, that they were buses, and that you absolutely could put a lift on them. It wasn't like they were running on tracks on the ground and that they were smaller or stranger or different from any other bus. They just didn't pay any attention [chuckle]; they went right on. So we ended up filing a civil rights complaint with the Urban Mass Transportation Administration in San Francisco and holding a news conference and trying to get some attention on the issue.

Landes

Do you remember roughly when this was?

Cone

I think this might have been going on in 1979.

The Fight for the Transbus Prototype

Cone

The other big thing that happened in 1978 was regarding Transbus. Several years earlier, the Secretary of Transportation, Brock Adams, had mandated that all the transit agencies begin purchasing--this is an oversimplification--what was called Transbus. Transbus had certain specifications that made it accessible. It was a low-floor, wide-door bus with a ramp that came out from the front that would accommodate two streams of passengers getting on and off. When it knelt, it got down very low, so the ramp wasn't a steep incline. The disability community

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embraced Transbus--and this is even before the 504 regulations came out--and was really supporting this.

But something had gone on with the bus manufacturers. There were two major bus manufacturers in the United States producing buses for public transit at that time, and one of them was called Flexible, I think, and it had just been purchased by Grumman Aircraft--the Grumman buses. The other was General Motors, and they had just retooled their factory to produce more of their high-floor buses. There were other bus manufacturers, like I think Gilliam, which produces school buses and later produced buses that are used in regular public transportation. AC bought some Flyers from Canada. But the two main manufacturers in the United States were not interested in producing Transbus.

So the date came and went, and nobody enforced anything. The transit operators said they can't purchase the buses; they're not being manufactured. The only person who wanted to produce Transbus was John DeLorean of sports car fame. He did produce a low-floor--I think it might have been ramped--bus that he was testing in Florida. But John DeLorean had his own problems, and nothing much came of that.

We made a big campaign of trying to put pressure on the Department of Transportation to enforce the Transbus mandate because, for one thing, it was a much more integrated solution. The bus didn't have to stop and a lift come down and hold up everybody else. The person in the wheelchair just got on the bus along with everybody else. The other thing was that we knew that they would maintain it, because everyone was going on and off the ramp; it wasn't a special particular piece of equipment that you could attribute the extra cost of to people with mobility impairments.

Landes

It sounds like a very integrated entry and exit system for buses.

Cone

Yes, that was the concept. We did everything we could think of to try to draw attention to the problem. There were things going on around the country. The Public Interest Law Center of Philadelphia, PILCOP, was doing things. They were distributing a lot of material, and they were sending us information and keeping us informed. At one point, the new Secretary of Transportation, Neil Goldschmidt, came to give an address to the community at the Veterans Building in Berkeley. I wrote up a press release saying "Disabled activists to confront Secretary Goldschmidt at community meeting on issue of Transbus" and explained Transbus and had a little quote.

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We went to the meeting, and we got seated in the front, and I mobilized a bunch of people to go to this meeting. He wouldn't call on us. I remember finally he called on somebody else who said, "You know, the lady in the wheelchair in the front has had her hand up the whole time. Will you let her ask a question?" So then I asked the question about Transbus. He said, "Well, nobody's producing Transbus," and moved on to someone else. Well, the press thought that was dandy, so then they interviewed us in the hall after it was over and tried to interview him, and we got some publicity around it.

The Demonstration at the San Francisco Transbay Terminal, 1978

Cone

Then we organized a demonstration basically to draw attention to the issue. We said that we wanted AC Transit--actually, we hadn't made any demands. We had, I believe, sent a letter to the AC board and the Muni board requesting them to send a resolution to the Department of Transportation that they would like to purchase Transbus. They hadn't done anything, of course. We organized this demonstration. It was another one of those ones where not everybody knew what kind of civil disobedience was going to go down. In fact, neither did we. We organized this demonstration at Justin Herman Plaza, and many people came. Then afterwards, we called on people to march--there were a variety of speakers--over to the Transbay Terminal. So we're marching to the Transbay Terminal, and this is not too long after we had had the sit-in at the Federal Building. You would have thought that someone would have gotten the idea, but here we go marching down the street. We had had people scouting the Transbay Terminal, and they said, "It won't work. There's all these concrete sidewalks in between the different lanes that the buses go down, with curbs. There's no way to get over those." So what we had decided to do was to sit on the Muni tracks outside the Transbay Terminal.

Landes

Who made that decision and when?

Cone

I think that Mary Lou and Judy and I made that decision in Judy's bedroom [laughs].

Landes

So at least three of you knew ahead of time.

Cone

Yes, and other people knew we were going to sit in. We told people we were going to sit in. We told people in advance, but we also said--I think I may have said it, because I think I gave the final speech about, "They said what's good for General Motors is

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good for the USA. Well, we know that what's good for General Motors is not good--." Something like that. "Let's go over and take the Muni tracks."

So we go over, and we're sitting there, and we realized that this is causing nobody any real problem.

Landes

Where were you sitting at the time?

Cone

On the Muni tracks outside the Transbay Terminal. So at that point, some smart person said, "Let's go take the terminal." We said okay. I think Ron Washington's sister, Georgette, might have been one of the people--I remember she was incredible. We had a lot of non-disabled supporters, like Joan Leon, and probably Lynn Kidder and Mary Lester. A lot of people were there who were not in wheelchairs, but the people in wheelchairs were the ones who needed to take this action. So we get in there and the non-disabled people or the people who have some strength are bouncing our wheelchairs up, and we just shot into all three of those lanes where all of the buses--we had every single lane for the AC Transit Transbay buses to pass through, and it was rush hour. By the time we had been sitting there for about forty-five minutes, there were thousands of angry commuters who were unable to get on a bus to go home.

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Cone

I have a picture of the backs of the demonstrators sitting there, and we're all right up close next to each other. This was the lane that I happened to be in. Judy Heumann and I are sitting next to each other, and I think the two of us were absolutely quaking in our boots. We were so nervous. Periodically we'd grab hold of each other's hands and say, "Can we stay here?" Delancey Street came out, and I think they came and brought us some coffee and sandwiches or something [laughs], which sort of helped. The commuters, most of them, were really upset.

I remember Ron Washington's sister, Georgette, going up and down and talking to the commuters and saying, "Of course we understand this is an inconvenience for you, but these people have to face this every single day of their lives. They cannot use public transportation, so they can't even go to work. They can't go to church or take their kids out or whatever." She was actually very effective. At a certain point there was almost like a roar. It sounded like a roar to me, of just the buzz of all the people that were standing there. At a certain point they came and informed us that we were going to be arrested, but it took them a very long time to arrest us because there were no accessible paddy

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wagons. And we were praying for them to arrest us by this time [chuckles]. It was horrible--all these angry commuters.

Landes

Was the press there?

Cone

Oh, boy, yes. They were definitely there. It was a huge deal.

Landes

Did it take them a while to get there, or did they come along with the demonstration?

Cone

I don't remember. But they were there. I'm sure we notified them.

Landes

So you got a lot of press coverage.

Cone

Yes. At one point immediately after that, I was interviewed for the Sunday Examiner/Chronicle. The headline said, "The Woman Who Leads the Wheelchair Militants." You know how I said I could never hide anything from my family? Well, my aunt was out visiting--

Landes

She just happened to be in San Francisco?

Cone

No, she came after the demonstration was over. She was staying at the Claremont Hotel, and she said, "Let's go down to the gift shop and get a newspaper." I was like, "Oh, my God." I mean, I didn't know it was going to be on the front page. I said, "I'll go down and get you a newspaper." I remember going down there and thinking, I am not going to get her the San Francisco newspaper. I got her the New York Times or something instead, and narrowly averted getting found out. It was always very coincidental. I think now she would think it was kind of neat.

We got a lot of news coverage. I remember they took us to jail and immediately released us. Whoever was the city attorney or the district attorney or whoever was supposed to prosecute us said that he was dropping all charges, that it was in the finest traditions of civil disobedience [laughs]. We thought that was great.

Landes

Did the sit-in at the Transbay Terminal have any impact on public policy?

Cone

It didn't. Actually, I think Carol Weinstein came down and was saying, "Oh, we're trying to do everything you want. What's the matter?" [laughs] I think we actually maybe did get AC Transit to take some sort of emergency vote or something, and that they

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may have said that they would be delighted to have Transbus or something like that. But Transbus was just a dead issue.

Landes

Because nobody was making them?

Cone

Yes. But maybe it will come back, eventually. There was some concern that the terrain in the United States is different. There are low-floor buses in Europe, and I think there are now some in the United States. But they've been used in Europe for a while. The terrain in the United States was not conducive; the low floors would get caught on the crowns of--

Landes

Of the San Francisco hills?

Cone

Yes, that kind of thing. Anyway, so Transbus went down; we lost on that.

The Disability Law Resource Center, 1978

Cone

By this time, the Community Affairs Department of CIL had been moved over--well, we moved with the establishment of the Disability Law Resource Center, which we called DLRC. DLRC, I believe, was the brainchild of Bob Funk, who was the director, and Judy Heumann and Mary Lou Breslin, who was lured away from her job at the university to carry out this huge training project--a million or two million or some enormous amount of money--to train consumers all over the country in their rights under Section 504 and also in advocacy and negotiating techniques.

That project, I think, was one of the most impressive--it was fully funded by the federal government, but it established a network of activists around the country that is still functioning to this day. These trainings were really, really high quality. Mary Lou was just a consummate professional, and she put together a team of people that was fabulous. They developed the curriculum, they did interviews--it was almost like going to an audition, to choose the trainers. Then the trainers were trained in these very intensive sessions to both speak about the substance of 504 to however many people were gathered--sometimes hundreds, I think--and then they would have breakout groups where they would problem-solve and lead. All the trainers had disabilities. They were blind or deaf or had mobility impairments. I think there were some parents. They had a special parent training, I think. Anyway, Mary Lou had this great big project that was housed at DLRC.

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Landes

And who were some of the key people there in addition to Mary Lou and Bob Funk?

Cone

Gary Gill and Guy Guber, both of whom have vision impairments. Gary Gill was a brilliant man. Gary was one of the trainers, but the two of them, I believe, did technical assistance over the telephone about 504 when people called in. DLRC got a big grant from the Community Services Administration to assess rehab or something. I'm not sure. There was a parent project that had some parent advocates. They had the KIDS [Keys to Introducing Disability in the Schools] project where they worked to bring the concept of disability into the schools. There were a couple of lawyers--Arlene Mayerson, who is now the directing attorney at DREDF and has made disability her career, and Shirley Nakao. Bob Funk was an attorney. I think Bob had in the back of his mind all this time that there was a need for a disability legal defense fund like the Mexican-American Legal Defense Fund or NAACP Legal Defense Fund, because now that there were civil rights laws there was a need for that. And the community affairs unit was housed there.

Landes

So you continued to work in the Community Affairs Department of CIL, but you were housed at DLRC.

Cone

DLRC was part of CIL. DLRC was on the other side of the street, housed in what's called the "Old Garage." Construction was carried out to make the whole thing accessible and to build offices. We were physically quite separate from CIL. CIL was very huge at that time. It took up the whole block almost. The direct services operated out of the regular CIL offices, and the more policy-oriented work was coming out of DLRC. Judy, who was the deputy director, tended to come over to DLRC when we were discussing big policy issues. She wanted to be involved in all aspects of CIL, but at a certain point around 1980, DLRC transformed itself into a separate organization called the Disability Rights Education and Defense Fund--DREDF. Judy was still on the board of directors, but I think that she felt that it was getting very much out of her control, and she was very concerned.

There was a certain amount of bad feeling when DREDF broke off from CIL. But of course it was the right thing to do. Later, Judy and Ed went on to set up the World Institute on Disability. An independent living center that has as its focus serving local clients really doesn't have the capacity to house national and international organizations that have a very specific focus. I think it was good, but I think that the birth of DREDF was a little difficult.

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The Department of Transportation Regulations: APTA Fights Back

Cone

Going back to my role, the 504 regulations immediately came under attack by the American Public Transportation Association.

Landes

Meaning in 1977?

Cone

They [the DOT regulations] came out in 1978, and the first thing that happened was that there was a study done by the Congressional Budget Office of the costs of implementing the DOT 504 regs. What they concluded was that paratransit was a much more efficient and effective way of providing transportation to people with disabilities. One of the things that they said, I think, in the Congressional Budget Office report was that it would be cheaper to buy every person who was going to benefit from this program a Cadillac than to try to implement the regulations [laughs]. There was a great deal of publicity. They got it out to the New York Times and the Washington Post and other important newspapers. There was this big national focus on why we have these costly regulations that are going to be so hard to implement, and they always focused on the New York subway.

Then they talked about paratransit and how cheap paratransit would be. Of course, we all know that paratransit that's at all equivalent is not cheaper than having a system that everybody's riding, because in general you can't have more than a couple or three people on a paratransit vehicle without driving people all over town to places they don't want to go. So you've got one driver and one vehicle with just a few passengers in it.

The reason that they came out with this finding was that they utilized existing paratransit service statistics as their basis for comparison. But the flaw there, which was very obvious to us, was that existing paratransit services tended to be very restricted. In some cities, there was a great big long waiting list, so they didn't have any idea of the actual demand, because the ridership was much less than the actual number of people who really needed transportation.

Then they prioritized types of trips: if you were going to work you were number two, if you were going to the doctor you were number one, if you were going to church you were number three, if you were going to a rec center you were number four. So even people who were on the list for service weren't taking anywhere near the number of rides that they would have taken, could they have actually used the system when they wanted to. We attempted to try to combat the CBO report, and Dennis Cannon--who now sits

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on the Architectural and Transportation Barriers Compliance Board, the ATBCB--did a study and wrote an excellent response to the CBO report. We used Dennis's information. We would call Dennis whenever we had a question, if we were going to be speaking to the press or whatever.

The major players in the transportation arena at the time around the country were Jim Weissman, who was an attorney with Paralyzed Veterans of America [PVA] and who specialized in transportation; John Lancaster, who I think might have been the director of PVA--he was a wheelchair user; Reese Robahm, who I think had become the director of ACCD--he's blind; Dennis Cannon, who by this time tended to play a behind-the-scenes role, because I think he had already gotten a position with ATBCB; and Jim Raggio, an attorney from PILCOP.

The Cleveland Amendment: Kitty Lobbies in Washington, 1980

Cone

In 1980, an amendment was added to the Surface Transportation Act --that's the bill that authorizes all the spending for public transit--called the Cleveland Amendment. It was introduced by a lame duck congressman from Pennsylvania. It had the support of the majority of the Public Works and Transportation Committee, I think.

There were some California people who were very good and who took our side and tried to defend the 504 reg in the committee, but there was a Democrat who was the head of the committee--I think his name was [Harold T.] Bizz Johnson from Sacramento--who supported the Cleveland Amendment. These were people who were used to talking to APTA on a regular basis. APTA absolutely had their ear and convinced them that the 504 regs were completely unreasonable. So the Cleveland Amendment provided for paratransit services. Basically any transit authority that didn't want to comply with the 504 regs had to supply paratransit services.

There were places that already required paratransit services, and they offered inferior service. They were unreliable. We knew that there wasn't going to be any kind of equivalency in the service. Dennis Cannon developed an equivalency standard for paratransit at one point, and it was beyond the pale to think that they were actually going to have equal time or costs to riders equivalent to the fixed-route buses or the rapid-rail systems. They would have to have a vehicle and driver for every few people.

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DLRC--and I think this was Bob and Mary Lou and Judy and Pat Wright--decided that I should go to Washington and lobby against the Cleveland Amendment. I believe this was the first big lobbying effort that was carried out, out of CIL or DLRC or what then became DREDF. We felt that it was very, very important, because if you didn't have the transportation component the people were going to be really hamstrung. They wouldn't be able to function freely in their communities, they wouldn't be able to get to their jobs, education and services. It was absolutely critical to have transportation. The transportation issue was always the hardest fought issue. It was always the issue where money was raised, where the opposition got the most support. It was sort of ironic, because we thought it was so similar to--we weren't sitting in the back of the bus; we weren't even sitting on the bus. It was very easy to present the issue.

Landes

When did they send you back to Washington?

Cone

I think I was there all spring and summer of 1980. I came back and forth a little bit. First I stayed in the Sheraton Hotel, and then I stayed in this Holiday Inn across from the Watergate. Then DLRC got an apartment which was used by DREDF for lobbying when Pat Wright used to go back--or anybody went back--for lobbying. There was this nice little one-bedroom apartment right near Dupont Circle, near the Metro, and you could get up to Capitol Hill by riding the Metro. So I was there for months and months, and the person I worked with most closely was John Lancaster. He's a very impressive guy. Our base of operations on the Hill was Senator Paul Simon's office. We worked with his legislative assistant, Judy Wagner. We would go to meetings with people from the committees, we would do private one-on-one lobbying where we would talk to congressmen or talk to their assistants. The staff were having meetings, and as I said, it was very strange coming together, staff who ordinarily did not work together at all.

Landes

For example?

Cone

It was Judy Wagner from Paul Simon's office, from the Rehabilitation and whatever committee that is--I'll find out the name of it. These people who were used to dealing with transit and trying to get more funding for public transportation services --they were completely different worlds and they did not understand what each other was talking about [chuckles].

Landes

How did Judy Wagner and Senator Paul Simon's office get involved in this?

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Cone

Because Section 504 was part of the Rehabilitation Act, it fell under their jurisdiction.

Landes

His committee's?

Cone

His committee's jurisdiction, yes. I was also trying to organize people around the country. I was working out of the--I guess it was the Disability Rights Center office--

Landes

In Washington?

Cone

In Washington. Which must have also been the ACCD office. I can remember meeting with Reese Robahm there and with Evan Kemp. There were never very many people around, and Brenda Farmer went back as my attendant--Brenda Farmer from the Disabled Students Program. I gave Brenda some sort of organizing tasks, and we tried to keep people aware of what was going on on a day-to-day basis. So anyway, the bill got out of committee--

Landes

The Cleveland Amendment got out of committee.

Cone

Yes. Then somehow or other, what happened is that it came up on the floor--this is what I've been told later. The Cleveland Amendment came up for a vote, and evidently--I mean, this sounds kind of bogus; I find it hard to believe--the congressmen from New York were told that if they didn't vote for the Cleveland Amendment there was going to be a cap put on the funding for transit services for New York City. Whether this is true or not I don't know. They had led the charge in favor of the Cleveland Amendment. By the time the thing actually came up, it was a complete rout, and I don't think they could even get enough votes to call for a roll call vote. So the Cleveland Amendment passed.

Then in the Senate, I worked with somebody--I can't remember her name: a woman who was Alan Cranston's aide. I guess I must have been in the gallery or I must have been outside the Senate chambers. They voted a compromise, and the compromise was that a transit agency only ever had to make 50 percent of its buses accessible. I can remember walking back with her to their office in tears. She was saying, "Why are you crying? This is a victory. We've salvaged something." I said, "It will never work. They will have no incentive to maintain their buses. The people in wheelchairs who are waiting for the bus are going to have half as much service, so the ridership will never be what it would be." There are so many problems inherent in this. It's not like you cut the service in half; you really--excuse the expression--cripple the service [chuckles].

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APTA Fights in the Courts

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Cone

The ironic thing is that the mass transit bill didn't pass that year. I guess it got put off. So the Cleveland Amendment didn't go into effect because they didn't pass the whole bill.

Landes

The mass transit bill did not pass?

Cone

No. They didn't have a funding bill that year, I guess. At the same time, APTA had filed a suit that was passing through the courts.

Landes

So this is a second way that APTA was fighting the Department of Transportation 504 regulations? Through the courts?

Cone

Yes. Ultimately they won.

Landes

What was the name of that case?

Cone

It was probably American Public Transit Association v. Goldschmidt. I don't know who was the Secretary of Transportation. It wasn't him.

But in any case, it went to a three-judge panel. I remember Abner Mikva, who was a big liberal in Chicago when I lived there. The SWP always ran a candidate against him, but he was considered quite liberal. I think he sort of kicked up his heels with the Daley machine a little bit. He was known as a real liberal. So here he had been appointed to the federal bench. So all these judges decided--I think it was unanimous--that it was an undue financial hardship for the DOT to implement these regulations, and they sent it back and told them to write some new regulations. It was a total defeat. It did not get turned around until the ADA.

Taking Leadership in a Struggle with BART

Cone

One of the other things I did, having to do with transportation, was that BART at one point was developing a plan that they called Remotely Staffed Stations. The concept was that they would have this bank of television cameras, and then they would have the monitors down in the Lake Merritt station with people watching them. They would have a few roaming agents going around, but they would just not have agents in the BART stations. So the union approached CIL and asked us what we thought of that.

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We immediately began to mobilize support for the position that they should not take the agents out of the BART stations. We played a leading role. There was a lot of support, from the League of Women Voters to other community groups. We pointed out what if somebody had a seizure, what if somebody got stuck in the elevators, what if somebody needed help? There were just too many reasons for having a human being around--that it was necessary to have a human being. It was another example where CIL took sort of the leadership of a community issue.

Landes

And when was this?

Cone

I believe this was '78 or '79. It was fairly early on, because it was before we moved over to DLRC.

Landes

Is there anything else that you'd like to say about your transportation work?

Cone

No. After I came back from Mexico, when Jorge was about five--I guess that would have been about 1986, I worked on a contract with Hale Zukas and Pat Piras to train the AC Transit drivers because the AC service at that point was really terrible. So we started interviewing the drivers, and then we realized that they had major, major problems. What good did it do to train them if they didn't even have room--or it wasn't even part of the procedure, even though it was something that they were supposed to be doing--to cycle the lift before they took it out of the yard in the morning? There wasn't time allotted for it, and there wasn't the space to do it. There just was no planning for it. There was nobody doing maintenance on the lifts.

There was one really good wheelchair mechanic who had risen to the top of his position. He could go no further without becoming a supervisor, and he wanted to be in the union. Instead of waiving the requirement that he move on to a supervisorial position, he went back to being a regular mechanic, so there was going to be nobody repairing the lifts. We went out and we checked out whether or not they had the right parts for repairing the lifts, and it sort of didn't even matter. The end result was that we ended up writing a report saying that there was no point in training the drivers, that they had so many systemic problems that training the drivers without having the policies in place really supported by the administration would just make the drivers cynical--more cynical than they already were about the program. That was the last time I really did anything in the area of transportation.

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Organizing Disabled People's Civil Rights Day, October 1979

Landes

Let's go back to the implementation of 504 regulations. There was resistance to the implementation of 504 regulations. What were some of the court cases or some of the issues that arose in resistance to 504 regulations?

Cone

A lot of entities that were supposed to implement 504 never did any kind of self-evaluation plan--which they were required to do within a certain period of time--that would assess what steps they needed to take to be in compliance, and then carry it out. Many, many places didn't do it. A lot of cities and counties and universities and all kinds of agencies that got public funds were covered by 504 and they never carried out their responsibilities. Really it's only now, with the implementation of the Americans with Disabilities Act, that some of the requirements of 504 are being fulfilled. In some areas, people were using 504 to try to protect themselves.

There were lawsuits that were going on, and the first one to get to the Supreme Court was a really bad decision. It was called Davis v. Southeastern Community College, I believe. The case involved a deaf woman who was studying nursing. She needed sign language interpreters, and the university contended that it would be an undue burden. There were issues that I don't remember. I wasn't paying much attention to the legal issues, although at the time I knew them. It got to the Supreme Court, and I don't think people felt it was the best case to have gone to the Supreme Court. It got there, the decision came down, and she lost. The case was a defeat.

Landes

The court decided that it would be an undue burden for the college.

Cone

Yes. And so they established a very low threshold for what would be an undue burden. That was, I think, the only 504 case that went to the Supreme Court that DREDF wasn't involved in. I think for the other cases that went to the Supreme Court Arlene Mayerson wrote amicus briefs or collaborated with plaintiff's counsel, and the court's thinking turned around over the period of a decade. They really did not get the civil rights issue; they really did not get it in the beginning [chuckles]. So we were very concerned.

Landes

You were very concerned by the Davis case [Southeastern Community College v. Davis].

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Cone

Yes, by the Davis case, and also later there was a task force set up by President Reagan that was headed up by George Bush on deregulation, and 504 was one of the issues that was targeted. But that came later. We thought that this was another salvo in the efforts to weaken 504. It directly related to money, as I recall.

ACCD called a national disability community meeting, and I believe that Pat Wright and Judy and I--and I think Mary Lou too--went back to Washington and participated. There were two different discussions that were going on. One was how legally to combat, how to choose cases that would get appealed up to the Supreme Court, how to collaborate, that kind of thing. It was more lawyer stuff. Jim Weissman was involved in that, and other people.

And then we also needed to do something to focus attention that it was indeed a civil rights issue. ACCD called for a day of reaffirming 504 that was called Disabled People's Civil Rights Day. People in different communities did different things. I remember that Debbie Kaplan was developing a disabled people's bill of rights, which was really wonderful, and it went far beyond what 504 had tackled up to that point, although people in the community were working on the different issues. This was in conjunction with the Disabled People's Civil Rights Day. It was the right to live freely and independently in the community, the right to travel, the right to participate in the civic process and vote, et cetera. It had the right to bear, adopt, and raise children, because there had been some ugly custody cases that people with disabilities had lost.

One was a father who was a quad. He and his wife were getting divorced, and he was denied any visitation because the judge thought he couldn't throw a football or something like that [chuckles]. So we sort of organized around that bill of rights. Out here in San Francisco we set up a little office that we used to organize for several months, leading up to Disabled People's Civil Rights Day.

Landes

Where was the office?

Cone

The office was on 1950 Addison Street, and it was fun.

Landes

In Berkeley?

Cone

Yes. We had to build the office. It was inside an office building. We were offered free space, and it was nothing but wide open space. So anybody walking in the front door, which was wide

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open, could have come in and stolen our typewriters if we had not built an office. This carpenter who worked on the ramp program at CIL--Ray Churchfield--came over. Ray, Lorrie Beth Slonsky, Gary Gill, Olin Fortney, Joyce Jackson, Mack--Mack was a paramedic, and I don't know how he got involved with us, but he was wonderful. We just had the best group of people over there.

Anyway, we built the office, and there was this really nice Vietnamese woman, Lillie, who was around the movement. She was Al Kalmanoff's girlfriend. Kalmanoff was supporting this effort. Lillie called one day, and she ran a program for Vietnamese refugees. She had some people who were literally fresh off the boat who were carpenters and didn't have employment. She sent them over to help us. We were all blown away by each other, because these people would come and bring big boxes of Vietnamese food that they would pass out and we would all eat it. That was before it got to be popular. So this was really wonderful.

Landes

And this was mid-1979?

Cone

Yes. It was summer. Let me finish about the carpenters. They would come over, and I remember Gary Gill--Gary was a big drinker --Gary would be drinking a bunch of beers. Gary was hammering nails, and he had two hammers--one in each hand. Gary's blind. This just blew them away. He's a great big burly sort of guy. Anyway, it was really neat because there were deaf people and there were interpreters, and they were just this great group of people. We built this office, which was like a big box inside of the building [laughs]. Shelley [Bergum] solicited some desks.

Shelley was one of the 504 trainees from Billings, Montana. Kalmanoff believed that she had real potential, and he came to me and said, "I have got this live one who I think will be a real addition to the movement. She was a schoolteacher, and she broke her back, and she would like to come out and be involved in the movement here, but she doesn't have any place to live. Could you put her up?" My attendant had gone to England for a month or so, so Shelley moved in. I said, "Sure, if she's really going to work." Shelley came and worked in that office. She just developed incredible strengths. She's a very, very smart person. She went on to become very active with CIL and DREDF and became a general leader in the community.

We did a lot of presswork, we did a lot of interviews and we did a lot of outreach to different organizations. Sometimes organizing a demonstration is more a vehicle for just getting the word out than it is for the actual pressure. Sometimes you're really putting pressure on the government; you're marching right

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up the Capitol steps and you've got hundreds of thousands of people. It puts pressure on. I think that this [the demonstration] put pressure too, because it did get coverage in the newspapers and stuff.

The day of the demonstration, it started out as a beautiful day, and we marched from Justin Herman Park down to the federal building. We were having this demonstration, and the next thing I know it starts to pour down rain, and we all race for our cars and the bus and the BART and what have you. It was over. But the people who worked on that, many of them just loved it. They developed friendships, and they learned a lot more about organizing and they also learned about the different disability issues.

Landes

What role did you play in organizing this demonstration?

Cone

I was sort of the coordinator. One of the things I was very much attempting to do was develop Shelley as an organizer. Shelley was very smart. It was kind of neat to have my own little situation where we could actually have meetings where we had a proposed agenda and where people gave reports on the activities that they were doing. It was nice to be in a situation where it wasn't just chaos. I mean, it was chaos in the office a lot of times, because there would be six things going on at the same time. I guess I was kind of a behind-the-scenes organizer and sometimes an in-front-of-the-scenes organizer.

Landes

This was for the Disabled People's Civil Rights Day in October 1979?

Cone

Yes. And things also happened in Washington, D.C. Things happened all around the country.

Landes

So the San Francisco demonstration, as in 1977, was one of several around the country.

Cone

I think quite a few, actually.

Landes

Do you remember anything else about the demonstration itself?

Cone

Well, this is embarrassing. I think Russell Means spoke. It was either Dennis Banks or Russell Means. I believe Jack McCloskey spoke, from Swords to Plowshares. There was a big contingent of children with disabilities and their parents. They were carrying signs like "State Institutions Are No Places For Children!" The whole array of disability rights issues was covered. We were defending 504, but we were basically saying, "These are the myriad

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ways that people with disabilities are oppressed. We don't have transportation, we're dependent, we're shut up in institutions. This is all the oppression that we face. This is to say that we have the right to live in the community like anybody else, and we deserve dignity and we deserve all those things--the right to have children, all of it."

Landes

What impact do you think that demonstration had?

Cone

I think it probably had more impact on the people who worked on organizing it, in some ways.

Landes

In the sense of developing new and more involved leadership?

Cone

Yes. Kathy Martinez came around as a result of that. Joyce Jackson got more developed. Joy Smith and Lorrie Slonsky were really brilliant. I don't think anybody had any bad feelings about it. In some ways it was kind of like this work [in 1997] that we did with the 504 twentieth anniversary celebration, except that not everybody who was working on it had a full-time professional job which was the case with the 1997 event. We didn't have a hired event planner; we had me and Shelley in the office. I believe Shelley was working for free, and I think I was getting paid $200 a month. We had a fundraising committee, and we had a logistics committee, and we had an outreach committee and a speakers committee and a transportation committee and all these kinds of committees and we got experience doing it.

But we were all there in the office. There were usually people there morning, noon, and night up until quite late at night. So it was a very compatible group of people, and we all just loved what we were doing. We were under pressure, but we weren't trying to do a high-pressure regular job and then do that on top of it. I mean, some people had jobs, but they didn't have the same level of responsibilities--we were younger then.

I think that around the country the activities got noticed by the press. I think it was another one of those times when you try to get the country to focus on disability rights as civil rights.

Trip to Nicaragua, December 1980

Landes

Kitty, in December of 1980 you went on a trip to Nicaragua sponsored by the Disabled International Support Effort [DISE],

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which had been formed that fall in the Bay Area. Why is it that you wanted to go to Nicaragua?

Cone

I was very inspired by the Nicaraguan revolution, and I was very excited by what was going on with disabled people in Nicaragua. There had been two trips to Nicaragua, small groups from our community. They reported a number of things. One was that there were quite a few newly disabled people as a result of the revolution and [President Anastacio] Somoza's Guardia just shooting people down. This group had been formed there in Managua called the ORD [Organización de Revolucionarios Deshabilitados de Ernesto "Che" Guevara]. They were going to attempt to establish a wheelchair manufacturing component to their program. They were going to be doing a lot of work with blind people, because prior to the revolution there was horrendous poverty and oppression in Nicaragua before the Sandinistas came to power.

I remember people telling us that blind people sold lottery tickets, but a lot of blind people lived in chicken coops. It just seemed so amazing to me. I think there was one leader of the revolution who was almost blind, Gaspar Garcia Laviana. Or maybe that was the name of the group. Anyway, I felt like the steps that they were taking in Nicaragua were really exciting. At that time, I believe the literacy campaign was about to start, and the campaign that they were carrying out at the time was for rural health. Well, it was for health care clinics all over the country. It was just a feeling that the people had an immense amount of power.

This trip was going, and I got involved. I wanted to go. I did speak Spanish somewhat; I'm now pretty fluent in Spanish, but I spoke enough to have conversations with people. I and my partner Kathy Martinez went. It was over Christmas. It was really neat to be spending Christmas there. Karen Parker and David Landes and Marilyn Golden--and I think Steve Diaz--no, not Steve Diaz--I can't remember all the people who went. We went in two shifts, and I went in the earlier shift. We got there, and we spent all of our time with the people from the ORD. They arranged for us to go to many places--we spent a lot of time at the [Aldo Chavarria] rehabilitation hospital.

There were a lot of young people there, mostly men. One of the things that we did was talk about sex; I think we took films about sexuality and disability with us. Most of these people were brand-new, spinal-cord injured, as I recall. It was the same as in the United States, you know: nobody was talking about whether or not they would ever be able to have sex again, whether they would be able to have a baby, whether they could satisfy a woman.

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So we had a couple of meetings where we talked about sex. That was one of the things that they really wanted to learn about. Also, I think it was helpful to them to hear people talk about the fact that they could be out in the community and having a life.

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Cone

We talked about our jobs, we talked about the movement with them, and we talked about their experiences. They taught us a lot about the Nicaraguan revolution. I think people were very inspired also by the Nicaraguans from ORD, who were bringing people down to Nicaragua and had set up this organization.

One of the things that was happening at that time--Carter was still president, but he was about to go out--was that there were beginning to be rumblings of a chill towards Nicaragua. I think that United States foreign policy was getting ready to shift to be virulently anti-Sandinista. The Sandinistas were making a big emphasis on what they called "People to People Solidarity and Aid." At the time that we were there, there were two groups there that sort of fell into this category: us, and a boatload of aid had arrived that was sent from Italian longshoremen.

In the beginning, the United States government, of course, had been sending aid. That was going to dry up, and there were rumors that the CIA was becoming very anti-Nicaragua and anti-Sandinista. And Nicaragua was getting aid from Cuba, but they were also getting aid from all over the world. What they were doing was so impressive, and it was so wide open. I can remember one meeting that we had that some Sandinista officials came to. We attempted to be in the background, because we didn't feel like it was our place as Americans to be talking about what the ORD and people in Nicaragua would need. But because of our presence it gave the ORD the opportunity to have this discussion with whatever level of Sandinista leadership came to this meeting.

There was practically no construction in downtown Managua because after the big earthquake that leveled everything, so much had not been rebuilt. Somoza had just stolen all the money that was sent from around the world. They wanted to build new housing, so we were talking about how when new housing was built, it could be built accessible--that there was no reason to build new housing with steps, that the housing could be flat. The entryways could be flat. Or little ramps instead of steps. There could be wide enough doors. It just seemed magical. At that time in Nicaragua there was such a spirit of building, of constructing a new society. That was certainly true with the disabled people.

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I believe it was for Christmas Eve, we went out to the rehab hospital. There were actually two hospitals: there was a military hospital, and there was a rehab hospital. I can't remember a thing about the military hospital. We went out to the rehab hospital for Christmas Eve, and Jaime Wheelock, who was one of the commandantes, came out and we had a big dinner and we sang, and there was one guy who had a guitar. One of the things that was interesting was that there were people who had come from different sides of the political spectrum who were in this hospital together, and they were learning to live together and get along and be brought together as a result of their disabilities.

We were treated to some pretty wonderful experiences. We went to Estelí, we went to the market--and then there's this little town right by Estelí called Monimbó, which--I remember this: it was all cobblestones, and getting around was kind of wild. In Monimbó, the Somoza Guardia went through this town and just rounded up people and shot and killed them. The people fought back with everything that they had. The women would pour hot oil out the window on the guardia. They were very, very brave people. The other thing I remember was the music. Wonderful, wonderful music out of the revolution.

After we came back, DISE sent groups down to the ORD for a number of years after that. They always sent groups down to the ORD. But as Reagan began his anti-Sandinista campaign and began funding the Contras, the dreams began to be shattered because the country was completely mobilized to defend itself against these destroyers who were armed by money from the United States drug laundering or whatever. It was so horrible and so frustrating, because there had been so much hope and there was so much potential and possibility. A revolution just has--it's like being in a mass movement multiplied by a million times. There's this huge energy that's generated in people. If that energy can be harnessed--and here disability was part of the revolution, and they were going to go for it.

It was really sad; a lot of good work was done by DISE over the years. They sent a lot of material down, and the wheelchair shop really got going and developed some real leaders who then went on to carry the lessons that they learned to other countries in Southeast Asia. It was absolutely beautiful. Now the country is very, very poor again. So many innocent people died. To me that was one of the hardest chapters to watch. Vietnam probably was the most compelling thing in my life, but having been in Nicaragua and seeing what a small country it was and known the people and seen what they were doing, I consider it to have been a

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great gift to have been able to lend whatever I did to that situation.

Landes

Any other favorite memories of Nicaragua or your time in Managua with the Organization of Disabled Revolutionaries?

Cone

Well, we ate a lot of gallo pinto, which is black beans and rice or red beans and rice, which I developed a great fondness for. And fried bananas. The people from the ORD would take us out and feed us and they would cook in their little headquarters.

One time, Karen Parker rented a car and took Kathy Martinez and me out to the countryside so we could just go see scenes that we had heard about. You know, cities and the hot springs and whatever. I remember that the police were so different than what you think of as police, say, in Mexico or El Salvador or something. They were young Sandinistas and they were enthusiastically helpful. They wanted to show us scenes of where this or that revolutionary activity had occurred.

We had a big party--I'm thinking it was New Year's Eve. It was a lot of fun; we were all dancing to salsa music. There was a great deal of drinking going on, and I had not been sober that long. New Year's Eve actually was the last time I had drunk, in 1978. So this was two years later. I wasn't drinking, and I was doing okay; I was having a good time. Then I said, "Could I have a Coke?" and someone gave me a drink. It was just loaded with rum. I just grabbed it and took a big chug, and then I realized I had drunk this big gulp of a Cuba Libre. I was very depressed by it and started to cry. I don't know why; it probably just made me want to drink or something.

Somehow or other one of the people from the ORD helped me the next day find Alcohólicos Anónimos. They said, "Oh, yes, there's a meeting right here, down around the corner." One of the guys in the ORD who was an amputee was also a member of AA. So we went to an AA meeting together in Managua. It was a neat meeting, a small meeting. Everyone was very friendly to me, and I spoke in the meeting. Afterwards they gave me the "serenity prayer" in Spanish. I still have it. It's a little wooden thing, and it says "Alcohólicos Anónimos, Managua, Nicaragua," on it. The people were enormously friendly and kind. It was wonderful.

Landes

So it was a good trip?

Cone

It was a good trip.

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VIII Adopting a Child in Mexico and Becoming a Parent

Making the Decision to Become a Mother

Landes

Kitty, in the period 1979 to 1980, you're thinking through the possibility of becoming a parent. How is it that you made the decision to become a mother?

Cone

I had wanted to have a child when I was in my early twenties, and I had been very discouraged by the doctor in the muscular dystrophy clinic. Then when I was living in Georgia, and I was in my late twenties, I got sterilized because I was living with this guy and I had been on "the pill" forever and ever. A couple of my friends had gotten tubal ligations from this doctor in Atlanta who was one of the pioneers--it was just beginning to be an accepted procedure. They were talking about it, and so I thought that makes total sense. It's a very simple procedure; they can do it on an outpatient basis.

I had been thoroughly convinced by the doctor in Chicago that if I had a child I was going to be bedridden and that it was an immoral thing to consider and so on and so forth.

Landes

Was the decision to be sterilized a difficult one?

Cone

At the time it wasn't, because I was really convinced that I shouldn't have a child, physically. I think that may very well have been bad information. I think what was going on with the doctor in Chicago with whom I discussed it was his fear that I would have a child with muscular dystrophy or that I would be laid up and that I would become too weak, but probably more than anything that I wouldn't be a good parent because of the disability.

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Landes

When you were hearing all of that back in Chicago--the potential physical difficulties and also that you wouldn't be a good parent --how did you feel about that?

Cone

I was in this experimental program where I was taking male sex hormones. I was taking testosterone along with digitoxin. It was this experimental program to try to slow the progression of the dystrophy. I was the only female in the test group [laughs], and everyone else in the group had Duchenne Muscular Dystrophy, and I had Limb Girdle. A variety of things started happening to me: I stopped having periods, and I grew some hair, and at a certain point my voice became what I thought was a booming bass. I was going through male puberty or something, I think [laughs], and my face broke out.

I went to the doctor and said, "I'm thinking about having a child. What about these pills? Is it going to make it impossible for me to get pregnant?" And the doctor said something to the effect of, "How could you possibly think about having a child? First of all, you may end up never walking again--" I was still walking--"You may end up in bed and never get out of bed. Furthermore, how are you going to take care of the child? What are you going to do? Drag it around in a wagon?" I adored this doctor. A lot of times women sort of get dependent-type crushes on their doctor, particularly if you think they're trying to cure you. I was mortified, and I felt guilty. How could I have ever thought that I could have a child? Of course I hadn't thought this out at all. I wouldn't be able to take care of it. Looking back on it, what's wrong about dragging a child around in a wagon? That's a perfectly acceptable thing to do. Whatever means you can work out for getting your kid around is fine. Nowadays they have "Snugglies" and bicycle seats and all of that. Anyway, I just thought, "Of course I'm wrong; forget it."

Then when I was in Atlanta--I did not think very seriously about it, but I was not encouraged to think about it. Actually, there were three women that I knew who decided to get sterilized. One of them had three children and another one had two children, and they were both married, and they both had to get the consent of their husbands, and they had to wait for a waiting period. This was not because of any regulation or anything, but they had to think about it for a month or so, and then the doctor would do it. Another woman was a single woman who was gay, and they wouldn't give her the sterilization, I think.

Then I went in and the doctor asked me why I was in the wheelchair, and I told him, and he said, "Why do you want to get sterilized?" I said, "Because I don't think I could have a baby." I don't even think he asked me that--I think he just said, "Why

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are you in the wheelchair?" and I said, "Muscular dystrophy." And he said, "And you want sterilization?" I said, "Yes," and he said, "Great. But you'll have to see a specialist to determine the anesthesia."

Landes

How did that make you feel when he said "Great"?

Cone

I thought, Of course he's right. But afterwards, when I look back on it, I think it was amazing. Here I am, a single person in their twenties with no kids--well, obviously I was with somebody--but these other two people who had finished having their families had to get their husbands' permission and had to wait. Clearly there was such a double standard and I was meant to be sterilized.

Landes

When did you come to this realization?

Cone

I would say in the late seventies when friends of mine, women with disabilities as severe as mine, started having children and raising them. Then I was just very, very disappointed, because I thought that there was no way that I could have a child.

Landes

In the early seventies when you were sterilized, did you at that time know of any women with disabilities that had children after they were disabled?

Cone

I had a friend who had adopted a child. She was married. But no, I think I did not, although I'm sure that they existed. I think there were a number of contributing factors. One was that after Alma and I broke up, Alma went to live with her mother--Claudia's grandmother--in Mexico. I had been living with this child and parenting her, really, for about three and a half years. I was very, very attached to her. I realized at that time that as Alma was moving further and further away from our family, Claudia and I were doing fine together in terms of me arranging to get her after school. Even though I was very active, I used to take her to meetings with me and she would go to sleep on the floor and stuff like that [chuckles]. I'd take her to parties, and she would go to sleep on the couch. I could have been raising her by myself. I realized then that that would have been a possibility.

Landes

How old was Claudia at this time?

Cone

She was eight. She was four when she first came to live with me and Alma. I felt very cut off from her when Alma sent her back to Mexico. I really wanted to have a child of my own so that that couldn't happen, that someone could take my child away and I have no rights at all.

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The other thing that was very convincing to me was that there were a number of women who were quite severely disabled who were having children.

Landes

People that you knew here in Berkeley?

Cone

Yes.

Landes

Or people that you knew elsewhere?

Cone

People in Berkeley: Judy Dadak, who had very, very little physical mobility. She was living with this guy, she got pregnant and had a little girl, and she managed to take care of the little girl. She had her in some kind of apparatus like a box in the back of her chair and took her everywhere.

Landes

What was Judy's disability?

Cone

You're born with it. She had really short arms and legs--very, very small--that you couldn't walk on. I think she just managed to drive her wheelchair with her hand, but she didn't have much mobility at all. Her daughter was not disabled. Then Terri Tanaka--I think she had Friedreich's Ataxia, which is also a progressive disability--had a baby, and she was carrying it in a Snuggly. Terri Tanaka had been in the sit-in.

Well, these two women were around CIL with their babies all the time, and I was so turned on by it. It just made me realize that I could certainly do it if they could do it. People who want to have children and are infertile or trying and trying to have children will tell you that when you really, really want to be a mother, you get this maternal fever and you think about it all the time, and it just grows and grows and you think you've got to find a way. I was in such a way that I didn't like to go to baby showers, and I was jealous when other people told me they were pregnant. When people told me that they had had abortions I would try to be sympathetic, but I didn't want to hear about it. I was personally very oriented towards having a child.

What happened is this old friend of mine, Kathy Condon, who I had known at the U of I, who used a wheelchair--she and her husband had adopted a child. She had moved out here to California for a period of time, and she came down to visit me. I was talking to her about how much I wanted to have a child, and she says, "Well, why don't you adopt a child?" I said, "Kathy, they would never approve me." She said, "You know, Kitty, anything you've ever wanted to do in your life, you've been able to do it. I'm sure you can do this if you really try. Now you just dedicate yourself to it. You can raise the child. I know you can raise

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the child, and I know you'll figure out a way of doing it." She gave me this big pep talk. I was with Kathy Martinez at this time, and I thought, "Well, maybe Kathy and I together could raise a child. Kathy Condon, she's right--I just have to try hard enough and I'll be able to do it."

Roadblocks at the U.S. Adoption Agencies

Cone

I started investigating the adoption networks around the country to find out if any people with disabilities that were anywhere near like mine were passing home studies. An adoption home study is where the social worker or an agency evaluates whether you would be an appropriate parent, and they look at everything from finances to health to age to whether you're married to what kind of neighborhood you live in to what kind of a family you grew up in. They look at everything. At first I thought I was going to try to adopt in this country.

People who have adopted are extremely, extremely helpful to other people who are looking to adopt, because they've been there, they know how hard it is when you want to have a child, and you're struggling through this process. They usually are very, very willing to help. So I got connected up and passed around, and I talked to people all over the country.

Landes

So that was a very important source of support and information for you?

Cone

Information that was very discouraging, because I found out about one guy who was a Vietnam veteran who was a para, and he and his wife who was not disabled had not passed their home study. I was told to talk to a woman in Washington, D.C., who was on dialysis and going through the home study process--she would be able to give me some tips. By the time I tracked her down, she had not passed the home study.

I found out later that Max and Colleen Starkloff--a great couple--Max is the executive director of Paraquad in St. Louis--adopted three kids. Max is a quad. But they did it through Catholic social services, and they're Catholic. I think that they may have pulled some strings or something, because they did manage to adopt three kids. I think they adopted their first one shortly after I started my investigation. I wasn't aware they were trying or how they were doing it or anything like that. Everybody that I talked to said, "If there's anything I can do to help, try calling

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this person." Everybody was very supportive, but all the information I got was very negative.

So then I decided to try an international adoption. There's this hierarchy in adoption, which I think works completely backwards. Anyway, I started the process with Children's Home Society in Oakland, because at that time there weren't anywhere near--

Landes

For an American adoption?

Cone

For whatever. I just started going to their informational meetings. The reason I did that was that Phil Neumark, who I think might have been working at the Department of Rehab under Ed --Phil did some investigating at the Department of Social Services and said that it would be about a year before I could even begin a home study.

Landes

He was directly helping you?

Cone

He was directly helping me as a personal friend. He actually went with me to the meetings at Children's Home Society, because I was going as a single person. Everybody else who was going were couples, and I just felt too uncomfortable. The way it works is you attend a series of meetings. The first meeting they tell you about all different types of adoptions. They say there are adoptions that they do, there are domestic adoptions, and then there are international adoptions. And if you are wanting to adopt in the United States, if you are white and you want an infant, you could only adopt a white infant because at that time there was a policy, which has since been changed by Congress. They didn't think that it was good for children--

Landes

That's in 1979?

Cone

Yes. Then they had the black social worker come and explain that it's better for children who are black or who are non-white to be raised in families of their own race, where there is more understanding of the racism that they'll face and all of the cultural issues--it's just healthier for them. There was a big push among the black social workers to try to find more adoptive families in the black and Latino communities. They said if you are an interracial family, we can help place a child with you immediately. Of course I was in an interracial family, but it was two women, so forget it [laughs]. That was absolutely verboten in those days. If they had figured out I was gay it would have been out the door. So then they said if you want to do an international adoption, and you want us to find and place the child with you it will take a longer period of time, and we want

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you to come back for another meeting about international adoptions.

Landes

They were willing to work with you.

Cone

No, this was the whole group of people.

Landes

This is not Children's Home Society?

Cone

Yes, but it's a whole group of potential parents sitting there--people who were wanting to adopt.

Landes

So they didn't say that specifically.

Cone

No, no, this was for everybody. There were couples in the room who raised their hands and said, "If there are children who are waiting for homes, and they're not white, and they're just getting older and therefore becoming less desirable as adoptive children, wouldn't it be better for a family like us to adopt them than to have them not be adopted at all?" And they said, "No, we are looking for families, and we are not doing any transracial adoptions." So people were very disappointed by that.

Then they started talking about, "If you're white and if you want a healthy white infant, you will probably have to wait three or four years before we do your home study." That can't be right. They just had so few infants. "And then we'll do your home study, and then you will wait until we place the child with you." So it was a very long period of time, if you pass the home study. The home study can go on for up to a year. "And if you are willing to take a child who has a correctable disability like cleft palate or they have some kind of disability that requires a surgery or something like that, then probably we could arrange for something to start within a year or two. And if you're willing to take a child who has a medium-range disability like a deaf child, then maybe it would be a year. If you're willing to take a child with mental retardation, we can place a child with you right now."

It was very clear that if you were single or older or somehow perceived as "less desirable" in terms of what they considered as desirable parents that you were more likely to get a child that might be more difficult to raise--one that was older or one that had a disability. Others got rewarded for being a "stronger" family unit with a "healthy" infant.

Landes

In traditional terms.

Cone

Yes, in traditional terms. Probably if I had tried to adopt a disabled child they would have given me one. I don't know. But I

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didn't think that that was a good idea, because I thought I'm just too weak to have handled a child with a disability. Judy Heumann was just adamant that I should adopt a child with a disability, that I would be a great role model and all of this kind of thing. I thought, a child that can't walk, I'm not going to be able to deal with him.

Landes

Was that hard talking to Judy about this issue?

Cone

Not at all. I thought she was very unrealistic.

Landes

You felt very confident in your own thinking?.

Cone

Yes. I felt like I needed a child who was going to be safe with me. So anyway, I decided this obviously is not going to work. So I went to the series on international adoption, and they had two options: one was that they would find a child and they would do the whole thing, and you would go through their home study process. I knew I wasn't going to pass the home study to get one of their children placed with me. I just knew from all this research I had done.

But they said, "We have this thing which is the $500 special, where we'll come and do a home study for you, and then you find your own child and you bring them into the United States with an adoption visa. And you do everything." Well, you have to do a lot of stuff anyway: you have to go through the FBI, fingerprints, and you have to prepare all your financial information and all of that.

So I got the papers, and I started doing it, and I just thought that this isn't going to work. They're never going to approve me. I was working on it, and at the same time I was also looking to adopt independently, which is where you locate a pregnant woman who is not able to keep her child. You make arrangements that you'll adopt the child. I was working through this adoption attorney, and there were two times while I was working with him that a young woman was about to give up her child for adoption, and there was such competition.

I remember one child, the mother was from Alabama, and she was a white cheerleader and the father was a black football player. There was such a competition for this child. I knew who some of the other people were, because the lawyer told me "I don't think that this is realistic." You write up a thing about yourself, and I stretched the truth wildly. "I come from an interracial family--" because my stepmother's Japanese. "And I live in a predominantly black neighborhood." I'm sure that the child got placed with a person that it was much better suited to

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than me. In any case, I began to realize that this wasn't going to work out, that it was very, very competitive, and it was almost like submitting yourself as a résumé, and you had to submit a picture of yourself. And I just anguished--do I show the wheelchair or do I not? It will completely knock me out of the running.

At this point, Phil Neumark had been studying the adoption laws, and he had discovered that if you adopt a child in another country, and you stay in the country and you live in that country for over two years, you can bring that child in as a family member. It's not an adoption visa that you get; it's a family member visa. It's as if you had a child overseas, almost. I think it was undoubtedly not designed for people who were wanting to adopt; it was designed for people who adopted while they were in another country as Peace Corps or missionaries or U.S Army or whatever.

So Phil said, "You know, you love Mexico. You love Mexican culture. Why don't you just move to Mexico and live there for two years, find a child, adopt him, and live there?" I thought that this was a great idea. So I talked it over with Kathy, and I drove down to Manzanillo where I had lived before. Actually, prior to this I had gotten a couple of books--one was called How to Adopt in Latin America, and the other was called How to Adopt in Mexico. It was more of a research book, and it had every single Mexican state and what its laws were--they varied tremendously from state to state. In some states you cannot adopt at all. In other states you have to be a Catholic couple and in other states you can be anybody; you just have to be financially able to take care of a child.

I looked at the information about the state of Colima, which is where Manzanillo is and where I knew people and knew I could get attendants and I could find a house, because I had lived there for a year. So I went down to Manzanillo for a month and did some investigation. People said that they were willing to help me find a child, but that I would have to go through this agency called DIF [Desarrollo Integral de la Familia]. I wasn't sure about going through DIF. I finally decided I didn't want to do it in Manzanillo. I convinced my friend Ceci down in Manzanillo to move to Tijuana, because the laws in the state Tijuana's in--Baja California Norte--are much more liberal and don't require you to go through a social service agency. You just go before a judge in an adoption proceeding. So I convinced Ceci to move to Tijuana, that I would find a house, and arrange everything, and then she would come and be my attendant.

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Moving to Tijuana, Mexico, to Adopt a Child, 1981-1984 ##

Cone

Often people say to me, "What an incredible thing!" They can't believe that anybody that's as disabled as I am could possibly move to Mexico, live there for two and a half years, carry out an adoption, and then come back to this country. I didn't think anything of it at the time that I was doing it, and the reason why is that I had enormous support and help from my friends. First of all, how did it begin? Well, two different friends drove me down to Manzanillo and back from Manzanillo.

Landes

When was this?

Cone

This was in late winter of 1981. It might have been like February of '81.

Landes

Who drove you down?

Cone

My dear old friend Julie Roberts, who I knew from the SWP. Kathy went with us and then she flew back to the United States. I stayed there with Ceci--this was while I was investigating--and then Lorrie Beth Slonsky, who's a sign language interpreter, flew down to Manzanillo and drove me back. Then when I got ready to go look for a house--I should say at this point that I was still in this alcoholism recovery group at the Pacific Center that I had been in for several years. There was Phase I, which was the first year, and then Phase II and Phase III. It was like a therapy group; it was run by a therapist. Two of the women in the group offered to have a child for me. But I just thought that I would find it very difficult to explain to the child. One of them was a very good friend of mine, and I thought it might have been very complicated: she might have wanted to become involved in the raising of the child as the years went by.

Then someone made an offer to me through the grapevine that they would have a child for me for $10,000. I just thought I couldn't explain it, I couldn't explain it. I understand why people do have surrogate mothers, but for me it just didn't feel like the right thing to do, although I don't know--if I hadn't been able to do this Mexico trip--if I would have not done it. And another one was a Unitarian minister who was running the group, and which I think was just an incredibly generous offer. But I think by this time--

Landes

What was the offer?

Cone

Just to have a baby and let me adopt it. But I think that this was easier. This was easier for me. I think I had already put

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the process in place, and everybody in the group realized I was going to do what they considered to be this drastic action, and that's when these offers began. But I already had things in motion. I had already gone to Mexico, I had already made the decision.

Landes

So you made an exploratory trip in February or March of 1981.

Cone

Yes. And at that point I convinced Ceci to move to Tijuana with me to be my attendant when I moved and help me set up my house, and then I would find another attendant, and we would begin the process of looking.

Then I had to find a place to live, so my friend Charlotte Rubens, who is still my beloved friend today, drove me down. She was working at Stanford. She had a two-week vacation for the year. She took one week of it and drove me down. We stayed in San Diego, and every day we went to Tijuana and looked and looked for a place to rent. I couldn't find a place to rent, so then I got a real estate agent and I started looking for a place to buy. We ended up out at Playas de Tijuana, which is Tijuana Beaches, and we were looking around at places, and the real estate agent located this contractor who had built a little house for his mother-in-law in the midst of all these fancier houses [chuckles]. There was this little house that looked like other people's garage.

We went in to look at it and it was on one floor, more or less--it had stairs in the bedrooms, but I convinced him to ramp them. There were a few little stairs, but it was a one-story house with three very small bedrooms, a dining room, living room, kitchen and a bathroom. It had a huge backyard, which was nothing but mounds of rocks and dirt and broken glass and whatever. I said, "I'll take it." He said, "It's $30,000." I said, "Okay, and I sat down to write out the check and Charlotte's shaking her head at me like "What's the matter with you? You're supposed to negotiate!" I had completely forgotten; I was so excited that I now had a place, particularly for $30,000 [laughs]--even if it did need a lot of work--that I just forgot that you're supposed to make a counteroffer [laughter]. So I paid the down payment on the house and arranged to get a Mexican mortgage.

Boy, did that ever turn into a nightmare, because the peso at that point was strong, and after I got the house and was living there the peso got devalued, and all the mortgages that had been arranged fell apart. So there I was, having paid the first down payment without the loan. But in any case, I put it in the name of the real estate agent because it was close to the beach and you're not allowed to own land close to the water in Mexico.

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Landes

You're not allowed to own land?

Cone

If you're not a Mexican citizen. I think it's to keep foreigners from coming in and buying up all the prime land on the beach. So I told the guy that he would have to ramp the three bedrooms and put a ramp from the living room down into the dining room so that I could get in the living room, and that I wanted carpet on the floor and some kind of tile on the dining room floor, because it really was very barren, and that he had to fix some stuff. So that was the house.

Then when I was ready to move I arranged with Mayflower to move a bunch of my stuff like my hospital bed, an old couch and a number of items. I had enough stuff that I was moving that I needed Mayflower, but I didn't move a lot of my stuff; I put it into storage. Kathy got an apartment in San Diego, so I put all this stuff in Kathy's apartment and then I arranged for a Mexican moving company to move the stuff to the house at Playas. That Mexican moving man turned out to be a really, really good friend of ours for the whole time we were there, and he died the week we were moving back. He was going to move our stuff back. He had a heart attack and died. But the whole two and a half years he looked after me; he kind of decided that we were these innocent women embarking on this adventure, and he had better take care of us--Arturo--he would come by on Sundays. He was just wonderful.

I got down there, and Ceci came right up and we met her. Joy Smith, who was a sign language interpreter, went down with me during this period. Joy and I were driving around Tijuana picking up Ceci and getting her set up in the house and making curtains and getting the house put together, and Joy and I are going back and forth across the border to Goodwill to get a dining room table and some chairs. Kathy's mother bought a stove for twenty-five dollars at some yard sale, and I bought a freezer. I bought a lot of stuff over at the military base in San Diego. I would go shopping once every two weeks or something.

Anyway, then Ceci arranged for me to get this other attendant, and she did it through this family that she knew.

Landes

As a second attendant or to replace Ceci?

Cone

As a second attendant. In the end she did end up replacing Ceci because Ceci, unbeknownst to her or me, was pregnant. She had left this guy she had been living with in Manzanillo, and she didn't realize she was pregnant, and she was having a very bad pregnancy. I guess I moved there in September, and by the beginning of December Ceci was bedridden. I was having to put her

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in the clinic and stuff, and then we ended up flying her back to Manzanillo with her kids. It was very sad.

In the meantime she found this woman Elsa [Toscano Fletes]. Ceci said, "Now you need to understand that Kitty and Kathy are a couple." And Elsa said, "Oh, no, I'm not going to do that. I'm not going to work for that kind of person. She'll probably attack me." And Ceci said, "Oh, no, I've known her for years, and she's very safe. You'll be perfectly fine. Don't worry." Elsa said, "I'm coming out there for a weekend just to try it." So Elsa ended up working for me for years and is my dear beloved friend to this day and comes to visit me all the time.

We fixed up the house and fixed up the yard, and I started looking for a baby. At first I had How to Adopt in Mexico, and I had a list of orphanages. I rapidly discovered that most children in orphanages are not adoptable, because to adopt a child in that state and bring it into the United States you had to have both the birth mother and father sign. And a lot of kids who are abandoned are therefore not adoptable.

Landes

For that technical reason.

Cone

Yes. So there are orphanages filled with children. And then there are other people who just leave their children in an orphanage and go to visit them periodically because they cannot sustain them. There's incredible, incredible poverty in that area. Well, there is all over Mexico. There are hills and hills of little cardboard and aluminum shacks. Ceci said, "Let's ask this couple, Rubén and Ramona," who adopted their two daughters what I'll call "Mexican style," which is where you register the child as your own and never tell them that they're adopted. But everyone else knows [laughs]. So everyone sort of knew that Rubén and Ramona's two daughters were adopted, but the daughters did not know. And they were teenagers. We asked them if they could help me find a baby. They said, "We're helping our niece right now, because she's been married for six years and hasn't been able to have a baby. So we're going to try to help her adopt one. And then we'll try to help you."

In the meantime, realizing that all of these agencies that had orphans in them were not going to work, I remembered something from an adoption book that I had read, and I put a notice in the newspaper and started getting calls. One call came from this woman who was in a dreadful, dreadful condition. She was sleeping on a mat, and she was working for this household of guys who were all mechanics. She was able to do less and less because she was just about to have her baby. I got her some clothes and sent her

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some money for food and stuff, and we worked out that I was going to adopt the baby.

I had a lawyer by this time who was a very, very clean lawyer, which I think was very good because there are some times that there are real scandals about adoptions in Mexico. This lawyer was squeaky clean in terms of absolutely doing it to the letter of the law. He said, "You can't adopt her baby, because you will not be able to get the signature of the father." This was disappointing but then I remembered "Wow, Rubén and Ramona's niece."

Arturo the moving man had linked us up with this young guy, Manuel Rodriquez, who had been raised in the United States but he was Mexican. He was taking classes over in San Diego, and so he had become our driver. I paid him on a weekly basis, and he came after school every day and drove us to the grocery store or to the doctor or wherever I needed to go. I went over and talked to them, and so we linked this young Mexican couple up with this woman and they adopted the baby "Mexican style," where they got the baby and they went and registered it as their baby. I saw the little girl when she turned one and when she turned two. She was about a month older than Jorge. That was just heartbreaking for me [chuckles] but it was wonderful for them. Then a month later I got a call that Jorge had been born.

[A brief passage has been withheld from on-line publication.

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Adopting Jorge and Two Years in Tijuana

[A brief passage has been withheld from on-line publication.

Cone

He was a day and a half. He was a tiny guy. He was basically a very easy baby.

Landes

How was the remainder of the visit with the birth parents?

Cone

I didn't ever meet them.

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Landes

So it was Kathy and Manuel--

Cone

And Ceci who arrived with him, yes. And Kathy and Manuel went to the Palacio the next day to register him. They took him so that his birth parents could register him, because they had to register him. So I have this very lovely picture of Jorge's birth father holding him, and the birth mother standing right there, and they're registering him as their child--his birth. Then a month later they went to court, and Elisa Espana the real estate agent went as my power of attorney so that I did not have to show up in court.

In the meantime, I had submitted papers from Cecil Williams at Glide [Memorial] Church about my moral character, papers about my financial worth and my ability to take care of a child, papers about the ownership of the house and all this kind of stuff to the judge. There was a lot of money that was paid to the judge, which is the way things work in Mexico. You wait for the right judge, you wait for the right time. But it was absolutely legal, and the birth parents went to court for the proceedings. I think that they always thought that Kathy was going to be his adoptive mother. They must have realized that she was blind, so I don't think that disability would have been as big an issue as I was worrying it would be.

Landes

So how were the first few months there with Jorge?

Cone

Well, he had colic, and I didn't have a clue about what I was doing. All I had to go on was Dr. Spock [laughs]. Dr. Spock is so strict about you feeding every four hours: at two, at six, and poor Jorge was hungry all the time, and Ceci would say, "Why don't you feed that baby? He's hungry." And I'd say, "Dr. Spock says--" She says, "Throw away that book; he's hungry!" [laughs]

He had thrush pretty badly, and I had to keep taking him to this clinic that was around the corner--Clínica Quintana--and Dr. Quintana was a jolly doctor. Jorge had something wrong with his toe, where the skin was growing up over his toenail, and Dr. Quintana took out a pair of scissors and just snipped off the end of his toe without any anaesthetic or anything. I almost fainted, and Jorge let out a howl like you wouldn't believe. And I took him to get his shots there.

Then I really wanted him to be able to see an American pediatrician. When he was about three months old I started trying to get the American consulate in Tijuana--I got him a Mexican passport. I went to the American consulate and just had a hell of a time. Of course there were stairs, and I was in my motorized chair. All these Mexican people were very friendly and carried me

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up half the flight of stairs--there was a huge flight of stairs with a landing, and we got up to the landing, and then Elsa--my attendant--and Manuel stood in line and they finally convinced the person who was processing papers to come down to the landing to talk to me. He came down and he said, "Now what is it that you want?"

I said, "I want to get a visa for my son so I can take him to the United States for visiting." He said, "Well, where are his parents?" I said, "You will see here I have the adoption papers, and they're translated, and this is a completely legal adoption, and I'm his parent." And he said, "Well, where are his real parents?" I said, "I'm his parent. He's adopted." He said, "I want to know where those real parents are." I said, "I don't know where they are. This is an adopted child. He's been living with me for months. He's been adopted for months. I'm trying to get him a visa. I'm an American citizen, and I want to take him to the United States."

He said, "Why do you want to take him to the United States?" I said, "Because I want to see a pediatrician over there, I want to take him to the rest of our family so his cousins and his grandparents can see him. I want to be able to take him to the United States." He says, "Well, I'm sorry. I'm going to have to deny this." I said, "Why?" He said, "We can't have babies running around here and there." Babies running around here and there. It was the most absurd thing I ever heard of. I was so demoralized.

The first thing was I decided that I was going to write a letter to [Congressman] Ron Dellums. But before I sent it, they had this thing called a local passport, which allows you to go across the border within a certain number of miles of the border for twenty-four hours, I think. The purpose of it is to encourage Mexican people to go shopping in the United States. So I thought I'd try to get him a local passport. It's called a crossing card. You get those at the border. So I go down to the border and go upstairs to the immigration unit upstairs--

Landes

You got carried upstairs?

Cone

No, this is at the border. They had an elevator there. It's all INS [Immigration and Naturalization Service] agents, and I've hidden his passport in my underpants because I'm afraid they're going to see it and know that he's been rejected for a visa--because they stamped on there "rejected." Just out of total luck, the woman who waits on me is an adopted child, and her mother has adopted like seven children, and she thinks adoption is the

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greatest thing. She is outraged that they have not let me get this visa.

Landes

Was this an American woman?

Cone

An American woman, yes. She says, "That's outrageous! That's wonderful that you've adopted this baby. I'm adopted myself, and I have all these adopted brothers and sisters. This is just discrimination, and this is the international year of disabled persons, and they shouldn't have done that. I'm going to call over there right now." So she calls over and she says, "Why did you deny this woman the right to bring her child into the United States? She wants to take him to the pediatrician." [laughs] She gave them the business.

At that point, I've pulled out the passport from my underpants because I'm all dressed up in a stockings and a dress trying to look very respectable. So I go back over there and they grudgingly give me a visa, which I renewed every six months until we came back to the United States. But I think Jorge was almost five months old before he got to come to the United States, and by that time he had gotten big enough that when I was feeding him, I didn't have enough arm strength to hold him on my lap and feed him, so I got this ball-bearing feeder. I was going over to Children's Hospital in San Diego where they were working with me in the Occupational Therapy Department, but I needed a real baby, so they were borrowing people's babies because I couldn't take Jorge with me [laughs].

That's when my real true hatred of the immigration service began--or the American consulate or whatever. And I had a couple of really scuzzy incidents with INS agents that just were outrageous. As I said, my friends were really wonderful, and they kept coming down to visit me.

##

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Landes

Who were some of the friends that visited you in Tijuana?

Cone

Joni Breves came down and visited in San Diego, and we went over there and saw her. Georgeanna Segelken and Carol Jenkinson from CTP, Bobbi LaNoue, Anne Valliant. Anne brought her son, Loren, who was one month older than Jorge, when they were both about two, and the two little boys played naked in the backyard. They stayed for a week; we had a great time. My friend Faith Dewick brought her daughter down, and we went to the San Diego Zoo and all these different places in San Diego that you take kids. Bappy--Mary Shea was called Bappy--and my friend Constance Mahoney and Charlotte Rubens and Emily Bergmann came down. Every time friends

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would come they would spend the night and stay with us--we had a pull-out couch which was just horrible. My family came too. My aunt came twice, I believe.

Landes

Which aunt?

Cone

My beloved aunt "Comat,"--Elsie Springer--who is like my mother, and who agreed the day I got Jorge to be his grandmother if my uncle could be his grandfather.

Landes

So you had support from within your own family?.

Cone

Oh, totally. My aunt came down when Jorge was just a tiny baby and bought him a stroller. It's a tradition in our family that you give a child a pewter cup or silver cup with their initials on it, so she brought that. She was wonderful. She took Jorge and got baby pictures taken and got him some little clothes. She was just great with him. Then she came later, when he was a little older--I guess he must have been about one and a half--and bought him a slide and a sandbox and stuff and stayed with us. She was in her seventies then. Elsa felt so bad about my aunt who slept on Elsa's bed, because she thought my aunt shouldn't have to sleep on her bed. But my aunt is a total trooper. But anyway, she came, and my cousin Ann [Springer McKnight] with her husband Paul and their three kids--Jorge's cousins.

When Jorge was about six months old I took him to get christened at Glide Memorial Church.

Landes

So you brought him to the United States specifically to do that?

Cone

Well, for a week. But that was one of the things. Henry Hurlburt and his wife Dorothy had written this play about me and Kathy, which had to do with me pulling Kathy on the roller skates and all kinds of stuff. They performed it that day at Glide Church, and then we had this little private ceremony. I don't think Cecil's christened another child, but I just wanted Jorge welcomed into the world in some kind of fashion. So we had this little service, and Cecil said these wonderful words like "We welcome you into the world, and we know that you will be part of the social responsibility community." It was a very nice thing. He held him up, and Jorge pulled on his beard. It was real nice, so then afterwards we had this party with lots of people.

Landes

There at Glide?

Cone

Yes. All kinds of people came and gave Jorge presents, which was really nice because Jorge never had any new clothes until then [laughs]. My cousins kept sending boxloads of used clothes, and

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Kathy's mother too, and he had a few outfits. Karen Parker had given him his outfit that he wore for that christening which was a very fancy little suit with little yellow pants--it was very fancy. He just looked adorable. But he didn't ever have very many new clothes, because I thought what's the point of buying new clothes if people are giving him all these used clothes? But he got some nice little overalls and toys and things.

Joy Smith came and drove, and Jorge was always easy. He would fall asleep in his car seat, so we'd usually plan to drive at night. I had this portacrib that folded up into nothing, so I put him to bed in his portacrib. He'd sleep in that. Usually I'd stay with Avril Harris and Ticia Casanova when I came up to Berkeley. One time I think I stayed with Judy Heumann and Joni Breves. So I managed to maintain contact.

In a way, it was lucky for me that it did not work out for me to live in Manzanillo, because I was able to have contact with my friends. People say to me, "How could you stand to live in Tijuana?" Well, they don't know Tijuana. It's a really, really big city, and it's got different kinds of communities. It's got very poor neighborhoods; it's got really rich neighborhoods; it's got the downtown tourist strip with the painted burros to look like zebras; and it's got middle-class neighborhoods, which is what we lived in. We lived in a middle-class neighborhood in a very, very peaceful area. I was very much taken in by our neighbors. Some of our neighbors didn't speak to each other, but they all were very, very nice to me.

One next-door neighbor and I were in the same dilemma because both of our mortgages had fallen through because of the devaluation of the peso. The banks closed down all the loans that had been issued before the devaluation. She had an incident going on in her family. She had a big fancy house, and she and her husband had just moved there about the same time I moved there. Her husband had to travel to different states for his job; he was a businessman. She had two daughters and one remaining living son, and one of the daughters was pregnant. Theoretically, she had slept with her boyfriend once while they were still living in Mexico City, and the mother and daughter went back to Mexico and the mother of the boy demanded that the girl take a blood test. She was so offended, she said, "Forget it, I don't want to marry him anyway," and came back. I really liked this girl; she had a lot of spunk.

Her mother, Eva, wanted Miriam to have her baby registered in her name, and then she was going to raise the child as her own. But Miriam wouldn't do that. I think that Eva felt a little uncomfortable around the other neighbors about the fact that her

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daughter was having this illegitimate baby. She was used to a big family. Her husband was gone, and one of her sons had just been killed in an accident.

I think she was lonely. She realized that Elsa wasn't a very good cook. There we were, Elsa and I and baby Jorge, and she used to invite us over every single day for the afternoon comida, which is the big meal. She would make these big meals, and every day Miriam would come over and say, "Mother wants to know if you would like to come over and eat." We would say, "Gee, we were just over there yesterday." She'd say, "She really, really wants you to come. She's made carne asada and she really thinks you'll like it." I'd say, "Well, I don't know." And she'd say, "And she wants to see the baby." So we'd say okay.

Landes

So you went through this charade every day [laughs].

Cone

Yes, every day. We usually ate sandwiches for lunch, so we just would stop having lunch because we knew that around two o'clock Miriam would be over to invite us for the comida.

A couple of times the engineer, who was the owner of both of our houses, came around to try to collect his money [laughs] because neither one of us was paying off our loan. We would just hide and pretend like we weren't in the house. Then I cashed in this insurance policy that I had gotten when my grandfather died, and I paid off the house. And Eva's family moved after a while--the husband got transferred someplace else.

Landes

Prior to cashing in this check, how had you been supporting yourself to that point?

Cone

I have a number of trust funds, and they've grown over the years. I'm very privileged; I acknowledge it. I have had a trust fund from my grandfather from the time I was about twenty. It hasn't changed much; it's paid me about $20,000 a year since that time. Now it pays me about $24,000. My mother had left me some money in her will which my father had challenged and taken a lot of it away, but part of it was a farm which I sold. I sold it at the time that farm prices were at their absolute peak, so I had some investments that I got money from. But it was basically enough to pay attendant care in the United States, and I got a little bit of money from Social Security because my father was getting Social Security, and I had never held a job that paid enough for me not to be considered a disabled adult child of my father. So I had these various trust funds. But I sure didn't have enough money to just hand over $30,000.

Landes

That enabled you to pay off the house in Tijuana.

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Cone

Yes. I hired another attendant, so I was paying two attendants and a driver. Between the two of us, Jorge and I got really good care. Arturo found us this other person. We were looking and looking for another person, and Arturo would come by, and he kept telling us about this woman he knew in another state whose name was Graciela [Rubio]. He said, "She's very strong, and I've known her family forever and ever, and I'm going to bring her here." But then he never brought her, and so we were getting a little bit desperate.

And then when Jorge was about one, he brought her mother and her aunt. They're Mormons, and they wanted to know if she would be able to go to temple on Sundays and if I would watch over her and make sure that she didn't get into any trouble. They didn't care so much about how much she was paid, but they wanted to make sure that she wasn't going to be living in a wild house. They talked with Elsa and with me, and Arturo interpreted.

Graciela arrived, and Graciela was the most amazing person. Elsa and Graciela were two of the best attendants I've ever had in my life. Graciela was very, very strong and very creative. She's one of these people that can sew anything or repair anything. In Mexico you don't have all these newfangled gadgets, so you have to know how to repair things and put things together from scratch. When you make a birthday party you make your piñata yourself. She and Elsa, both of them, had great senses of humor. Lovely, lovely people.

Graciela's family was pretty middle class, and Elsa's family was poor. Elsa had grown up absolutely impoverished, many times not having anything to eat. Elsa started working for me when she was about twenty-one, and it was so interesting to watch her transform. She was kind of a pudgy and rather unattractive person in a certain sense--she didn't have any confidence in herself, and her hair stuck straight up, and she never wore any makeup. Then she and Graciela together went on a diet, and Elsa got fancy haircuts after she got this job and she could afford it, and she started getting snazzy clothes, and she went out and won a contest for dancing the cumbia. Anyway, both of them are great people.

Landes

So you had wonderful help in Mexico.

Cone

I did. And we all cried fiercely when we left. Elsa and Graciela moved to the United States with me. I fixed their papers for them. And Manuel stayed down in Mexico, and my brother George came to drive us back--this was about two and a half years later. We had all been together for a long time--Manuel since the beginning and Elsa since the beginning--and we just cried and cried, all of us, Manuel included. Big macho Manuel [laughs].

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But he was just a wonderful guy. He was completely committed to making sure that we were all right. He also was brought to me by Arturo. Arturo said, "You need someone who can drive you. You can't be without a driver." He said, "I've got this friend, he can use the money."

Manuel, I think, worked six days a week and took one day off. But if I ever needed him he would come through. One day Jorge had an accident: he was almost one, and he fell off of my bed onto the stereo speaker and cut his face from the nostril down into his lip, and it split wide open. Graciela took him over to the clinic, and she said that the doctor wasn't in, and the nurse didn't even know how to do a butterfly thing--it was a mess.

Manuel just happened to call, and I said, "Manuel, we have this terrible crisis. Can you drive us to San Diego?" He said, "Yes, I'm in San Diego right now; I'll get there as fast as I can." So I called the border INS office--when you cross the border you have to wait sometimes an hour and a half--I was crying, and I said, "I'm an American citizen, and my son has just fallen and hurt himself--he's cut his face open--I have to take him to a pediatrician. What shall I do?" They said, "Just drive between the lines, go to the middle booth." There are around fifteen booths, I guess. "We will know that you're coming, give us your license number." As soon as we went there, they just waved us through. I thought, "Boy, if we had had a truckload of illegal aliens we could have gone right through with that story [laughs]." They just waved us through and we sped to the hospital.

When we got to the hospital, boy, did they question me. They said, "Why did you wait so long before bringing him in? Tell us how it happened." I thought, "Boy, they really do check for child abuse here." I mean, I was sort of embarrassed. I explained the whole story, and then they put Jorge to sleep and sewed him up and fixed him up. And Manuel was just completely committed to our family.

Landes

So you had a lot of adventures.

Cone

Well, we did have the adventure when Avril came. I'll have to tell you that one off the record. Avril and Ticia came to visit.

Landes

You were in Mexico for two to two and a half years.

Cone

We moved there in September of '81 and moved back in March of '84.

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Landes

Is there anything else, any highlights of that period in Mexico that you want to talk about before we talk about your transition back to the United States?

Cone

The thing about it that was so wonderful was that we were very integrated into our community. So I learned about many Mexican customs. I got invited to weddings and quinciñeras and piñatas. I learned to speak Spanish, and I learned new Mexican foods and more about Mexican politics. I never did get into watching Mexican novelas [soap operas] or Spanish novelas.

There are some funny stories. I was fixing up my house. Bobbi LaNoue came to visit me twice, and the first time she came it was very cold. I lived near the beach, and I don't know why but the house was very cold, and we didn't have any sort of heating system. So I decided I was going to put in a fireplace. I got a contractor who built a brick fireplace, and then I bought one of those glass screen things so that Jorge wouldn't crawl into it.

Anyway, Bobbi was sleeping on the couch in the living room the day that they started to tear the hole in the wall to put the fireplace in. She was sound asleep, it was like seven o'clock in the morning, and she comes racing in and says, "Kitty, Kitty, my God, there's something that's knocking on your house, it's going to knock the house down! They're tearing open the wall of your house!" [laughs] "It's okay, Bobbi; they're just putting in the fireplace."

The next time she came to visit, there's this custom on Mother's Day where you hire mariachis to come and play "las mañanitas" for your wife or your mother. They play las mañanitas at like three o'clock in the morning at dawn. So Bobbi's out there sleeping on the couch and all of a sudden--they couldn't get right in front of the other house, so they got right next to my living room, and these trumpets begin to blare, and Bobbi comes running into my room, "Kitty, Kitty, there's something going on outside!" [laughs]

It was a good experience for me because I was absolutely forced not to be a workaholic, which I sort of am. It got me into a whole much more relaxed pace, and I really got to spend time with Jorge when he was a baby. I mean, for the first two and a half years I was with him, I think, every single day.

Landes

So you were a full-time mom, which is a full-time occupation.

Cone

Yes. I could have left him with Elsa or Graciela, but I took him with me everywhere. I took him with me to San Diego, and we went

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to the zoo a lot. We went to the beach. There weren't any parks that I could find in Tijuana that had sand, so I used to take him over to the parks in San Diego so he could play. And he went to piñatas in Mexico, and he had piñatas for his birthdays. He was around enough Spanish so that he can speak Spanish to this day. His Spanish isn't that great: his accent is slightly American, and his vocabulary isn't all that great, but I keep trying to have experiences for him and try to have attendants that speak Spanish, and he speaks Spanish. So he's managed to keep that. He was just in this quinciñera this summer where he was the main escort; that was very neat.

Preparing to Leave Tijuana and Return to the East Bay

Landes

Not only did you adopt a child successfully, but it sounds like you had a very positive experience for the entire two or two and a half years that you were there.

Cone

I did. When I left it was hideously stressful because I went for a mammogram the week before we were leaving, and the doctor scheduled me for surgery the week that we were leaving. I had to go into the hospital and have surgery--

Landes

You had a positive mammogram?

Cone

Yes, but it turned out not to be cancer. My breasts were just so fibrous that you couldn't see. I went into the hospital and I stayed overnight in the hospital. They cut out a third of my breast, so I had stitches. I got out of the hospital, we're trying to pack up all our stuff, we have all of our arrangements made, and that week Arturo died. We couldn't find any other moving company that had a permit to go to the United States, because there's a real rivalry between the Mexican and American moving companies. They won't let the Mexican movers come into the United States. It's hard for a Mexican mover to get an American permit, and Arturo somehow or other wangled one.

Arturo's death was very traumatic emotionally, because Manuel was very close to Arturo, and Arturo had been our dear friend and helped us in all kinds of situations during the whole time we were there. And then we didn't have a mover. So Manuel had to go back and forth across the border taking those things that I was going to take back to the United States, like my hospital bed and Jorge's bookcases and what have you. It's hard to go across the border with things in your car anyway, because they want to look at it. It's a whole process twice a day, for an

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entire week, moving everything. Some stuff I just gave away or sold, like the freezer.

Then, in addition, I had been trying to get this real estate agent to sell the house, and he kept saying he was trying, and he brought a person here and a person there. And the house was in Elisa España's name, and I was not comfortable about leaving the house in her name and moving out of the country. I had no idea what was going to be happening. I had put the house on the market like three or four months before, and nothing was happening. The house had totally changed. I was asking less for it than what I had paid for it. I had made all these improvements; I had put a big window and a fireplace in, and I had a gorgeous garden, and I had put up a fence and those charming bars with a design on the windows. It looked like a totally charming house at this point. But it was not selling.

So I put an ad in the Los Angeles Times and managed to get this guy who not only bought my house but also bought Elsa's car--I had given Elsa driving lessons, and Elsa now had a car.

So the night before we're moving out there's no furniture left in the house--not even my hospital bed; I was sleeping on the couch, because we decided to leave the couch there. We moved it all into the garage of a friend of mine who lived in San Diego because we didn't have a mover. Then Mayflower came and picked it up from her garage. The guy who was buying the house came over and paid me $21,000 in cash the night before we moved, which was just amazing to me. There was a huge amount of stress between worrying about breast cancer, having surgery, having Arturo die, having to move everything piece by piece across the border into my friend's garage, and then getting $21,000 in cash the night before we move, thinking it's not going to come through. But it all came together in the end.

We moved up to Berkeley, and the house we were moving into was not finished.

Landes

This was not your old house on 61st Street?

Cone

No. I had bought a house in Berkeley, because I didn't think that house was big enough. There was me and Jorge and two attendants. So I bought this house in Berkeley and made an addition onto it. Oh, and that was also traumatic that I bought the house. The real estate agent--who was also my friend, Arlene Slaughter--was murdered in the middle of buying the house.

Landes

All of this is in March '84?

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Cone

Yes.

Landes

What happened the first day that you arrived back in Berkeley? Where did you stay?

Cone

We stayed with Avril and Ticia. The Mayflower arrived with all the furniture, and the floors weren't finished. But fortunately the hardwood floors did not cover the whole house, so they could go through the back and take things through Jorge's room which had a linoleum floor, and out into the hallway had carpet, and take it upstairs. They took all the furniture upstairs, and then after everything was dry we moved it back down again [laughs].

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IX Returning to Struggle for Disabled Civil Rights, 1984

Working at the World Institute on Disability, 1984

Landes

Kitty, in our last session we finished--you were talking about your stay in Mexico, and then you said you returned to the United States in March of 1984. What did you do when you returned to the Bay Area?

Cone

I arranged for some child care for Jorge, and I began to work at the World Institute on Disability--WID. At that time WID was operating out of Judy Heumann's home. There was a very small skeletal staff. I think Ed was the president, and Judy had sort of an equal position to Ed, but it wasn't as highly titled, and Joan Leon. It was a triumvirate leadership. Then Hale Zukas was working. I was working. Anita Baldwin. Janet Mack was the secretary. I know I'm leaving out people. This was the original crew, I think.

Landes

And as late as March of '84 they were operating out of Judy's home?

Cone

Yes. Judy had called me up in Mexico and said, "You're coming home. Would you come to work at WID? We're starting this organization that is going to be doing international work and is also going to be carrying out this research project gathering and evaluating data about the different personal assistance services programs (PAS) around the country." It's a research project. I said, "Judy, I think that's a great idea."

At that time we were still very hopeful about the possibilities for some sort of national PAS bill that would combine the various pots of money and develop some principles upon which to operate. It would be a federal program, and we knew that it was going to be necessary to have statistics and to be able to bring examples of what was going on in different states to show

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what worked and what didn't work as the program was being designed. I think that Judy believed--and I certainly believed--that the purpose of the research was to lay the basis for legislative efforts further down the line.

Anyway, when she called I said, "Judy, I know nothing about research. I dropped sociology as my major so I wouldn't have to take statistics in college." [laughs] "I don't think I could run a research project." She was considering me as running the project. She said, "You've got the right politics. That's really the most important thing. The rest of it is easy," or something like that. Well, it was not easy for me.

Landes

So did you take the job?

Cone

I took the job, but fortunately for me--or else I would have really fallen on my face--I don't think I was heading it up; I think it was being headed up realistically by Joan Leon. Hale and I were two of the--we were the researchers, I guess. One of the very first things that we did was to do a study of the In-Home Supportive Services [IHSS] program in California. Hale did that report, and I worked with Hale on it. I think Hale and Joan may have been credited as being the authors. I think Hale did actually most of the writing and analysis, and he gathered the statistics.

At that time, the two really important things that WID was doing were going to other countries and meeting with people from those countries and interacting with them, supporting them as they built their movement, spreading the concept of independent living, helping them in whatever ways they could to get something going in their countries. In the beginning I think there was a real focus on Europe--Spain and Italy and also the Scandinavian countries. Ed and Judy did most of that traveling.

Landes

And this is in the period of the mid-eighties, while you were working there at WID?

Cone

Yes. At the same time, the attendant care project was floundering and I can't remember exactly how it happened, but I went to Joan and said, "I am just not equipped to do it; I don't have any idea how to design a project." I think Joan was playing her usual development role, where she was picking up most of the administrative responsibilities, because Ed and Judy were not consistently in the office.

So Joan was writing grants and searching for money and keeping things going day-to-day. Judy was being very much the

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activist, out in other parts of the world. And Ed was doing some international work. Shortly before that, Ed had just won the MacArthur Genius Award and had gotten $400,000 or whatever.

Landes

Do you remember what year that was?

Cone

I think it might have been in '84. Ed is very, very charismatic. He was able to convey the ideals of the independent living movement and disability rights to people in a way that could just move them powerfully. He wasn't a detail man, and he certainly wasn't an administrator, although he had been the head of the Department of Rehabilitation for the State of California. I don't think at that time Judy was a very good administrator either. When our little staff would have staff meetings, and there would be disgruntlement about anything--I'm thinking in particular of Janet Mack, who was the receptionist, secretary, and all-around gofer person. She was very, very smart. When she would raise ideas, she would kind of get pounded. There wasn't really room for a lot of "What are we doing here?"

Landes

Did you feel that Ed and Judy were being defensive or did--

Cone

I think Judy was being defensive. She was doing wonderful work.

Yes. That year Ms. chose fifty women to keep your eyes on and Judy was one of them. Fifty women who will have an impact on the world or the country or something. So Ed and Judy were getting a lot of attention for their leadership roles. At that time there never was, I feel like, any kind of structure that made it possible to function easily or comfortably [chuckles] as a staff person. I also feel that they had trouble from the beginning defining their mission, and whatever came down the road that seemed like they wanted to do it or there was a source of money to go after, they would do that whether the project fit within any defined mission.

Landes

What was your sense of the mission at that time?

Cone

My sense of the mission was that it was to reach out and form links with disabled people around the world and spread the ideals of the independent living movement. Also it was very important to do this attendant care research and that hopefully it wouldn't just be a think tank--that it would go on to be a political force, which it never did in terms of advocating for personal assistance service legislation.

Landes

I understood you to say earlier that the focus of that research was domestic--that is, the United States.

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Cone

Yes.

Landes

Did you investigate personal care assistance in European countries, for example?

Cone

There was a lot of knowledge because of the travels and because a lot of international visitors came. We knew about what was going on in some of the Scandinavian countries. I think we knew on a more superficial level than what we were finding out about in the United States. Even there you have two prongs. It was doing domestic research, but it also had this other prong of doing international work, which was okay; it would have been possible under one roof, but when I was there the staff was very small.

Landes

How long did the staff operate out of Judy's house?

Cone

Well, we very quickly moved into an office over on Oregon Street. Joan hustled up some desks and got her now-husband, Ramon [Jimenez], to come in and put up some dividers. We got some computers hooked up. It was kind of a funky little office, but it was perfectly acceptable. It was okay. I think it was 1720 Oregon Street. When we moved in there, we hired Simi Litvak to head up the personal assistance services research program. And Simi is a Ph.D. in sociology and has research experience.

Landes

So Simi headed up the project you were working on?

Cone

Yes. She had a great deal of experience and as I recall she designed the research project. Then I fell back into doing just really basic phone calls. Nancy Ferreyra and I both were making phone calls to different agencies in different states. I think Nancy Ferreyra, who was quite young at the time, was actually a lot better at it than I was, because I really didn't enjoy doing it. You'd call bureaucrats and you'd find out how many people were receiving attendant care services under Title III of the Older Americans Act. Then you'd call another agency and ask how many people were receiving services under Title XIX, Medicaid, and what were the restrictions. There was a whole series of questions that you went through. Then were there any other services that were funded through Title XX of the Social Security Act.

Anyway, there were numbers of different programs that we needed to look at. So the data did begin to come in, and Simi was the person who was analyzing it. I wasn't unhappy doing the work; I just did not feel like it was a valuable use of my talents for me to be making these phone calls. It was a way for me to bring home a paycheck. I didn't feel like I was making a big contribution--or I was making as big a contribution as I could

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have made doing anything else, probably [chuckles]. But that's what my job was, so I was doing it.

Then I kept getting sick, and looking back on it, I think I was getting sick from something in the building. I think I may have had allergies all along, but I was running a fever a lot. I just was continually getting sick and having colds and stuff. What I started to say about how WID will chase the money--I think the difference between WID and DREDF, one of the differences, is that DREDF has this very clearly defined mission of just doing disability civil rights. It'll do all kinds of activities--technical assistance, litigation, lobbying or whatever, but it is for civil rights activities, for nondiscrimination. It was very clear what its mission was, but that comes later. I think that Ed and Judy and Joan all tended to lean in the direction of if there was a pot of money available for a study of importance of inoculations, we would write a grant for it. And Joan is an excellent grant writer. They began to get grants. A lot of this happened after I left. One of the things that I remember going on while I was there was that Ed made contact with Carl Lewis.

Landes

The Olympic sprinter?

Cone

Yes. He was the biggest thing going that year. He was winning the gold in all kinds of stuff. They expected him to. This was after the Olympics. I don't even remember what the focus of it was, but Reagan's home was at San Clemente [sic] and Ed and Bob Gnaizda from Public Advocates got some money from Werner Erhard, I think, and they were going to go and meet up with Carl Lewis, and they were going to carry something like an Olympic torch and present Ronald Reagan with this Olympic torch and this document with some twist on it that had to do with the Olympics, that we're celebrating this perfection in athleticism, meanwhile this is what's happening to disabled people around the country. They brought in Marian Blackwell Stratton, who was at that time working at DREDF to write the document. And I can't remember what the document was. Marian is very smart, and she was doing research and collecting statistics about the state of the population of disabled people in the United States. That was just something that occurred, and so they did it.

Landes

You feel that that whole project was a tangent to what WID's mission was?

Cone

Yes.

Landes

Did he do it in order to bring in more money?

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Cone

I don't know. They just got this idea and they did it.

Landes

You feel that sapped the energy of WID?

Cone

So-and-so was working on this, so-and-so was working on that.

Landes

Are you saying you didn't think there was a coherent strategy as to how to carry out WID's mission?

Cone

I don't think they were really clear what their mission was. Another example was that Ed was going to do a series of trainings in the Episcopal church. Fine. But it was frustrating that there were little projects springing up here and there that didn't seem to have any relationshop to each other or to a central mission. Anita Baldwin was training city workers in San Francisco. I wasn't the only person that felt this way; there was considerable "What are we doing here?" from certain members of the staff.

Landes

Which other members were feeling this way?

Cone

I think Anita Baldwin, and I think Nancy Ferreyra to a certain extent.

Landes

What about Simi?

Cone

Simi was ensconced in her project, which was a very valuable project, and she was going forward. At one point I think Joan got some money from the San Francisco Foundation and they brought in a consultant. They went around and they asked everybody what they thought the goals of the organization were--what was the mission and what were the problems, and then they went and evaluated it. Sort of an organizational consultant to help you get yourselves on track. Then they presented it, and I just remember looking around the room and people at the staff level were going "Uh huh..." [in a skeptical tone] because we knew that there was no way that you could tame the genius of these three people.

Landes

The three being Ed, Judy, and Joan?

Cone

Yes. And I think that there was a certain amount of Judy working really, really hard, and Ed working in a much more relaxed fashion--partially because his disability was more severe, but partially because of his style. I think there was a feeling that Ed got credit for everything--that WID was Ed. Joan was working very hard, but Joan tended also not to be straight on in her functioning, which may have been a function of the fact that WID's mission wasn't real clear.

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Landes

What do you mean by "straight on"?

Cone

She would vacillate on things.

Landes

Vacillate on whether or not to take money for something or how to carry out projects?

Cone

How to carry out projects. And that may just be a personal characteristic of hers. I think that her charm and her absolute commitment to the disability cause really enhanced WID's ability to grow in the beginning. Here you have these two very charismatic leaders with severe disabilities--I'm not supposed to say that; what are we supposed to say? There's a new word. Significant disabilities. This woman who has been Ed's right-hand man, so to speak, for years. Since the early days of CIL she was with Ed as his assistant, whatever he did--whether he was at CIL, the Department of Rehabilitation or at WID. She really knew how to package and market, but she didn't have a clear picture of where we were going either, I don't think.

Landes

You seem to be saying that WID had a significant problem with administration of the organization.

Cone

I think so, yes.

Landes

It had visionaries at the head but problems carrying the administrative functions of the organization?

Cone

I think so, and I don't think that that's unique to WID by a long shot. From what I've heard WID is suffering terrible problems right now, and I think that they may very well have grown out of some of its early lack of clarity. And the fact that they went after all kinds of money. I mean, at one point they were doing an AIDS project, and they were doing--this is later--workshops with people with AIDS, locally, and at the same time they were doing a national research project on personal assistance services, and at the same time they were doing this international work. I just don't think it's healthy for an organization to chase the money and to contort yourself to fit what grant makers want. Joan articulated to me that when she realized I was doing development at DREDF, she said, "How's it going?" and I said, "Well, you know, in some ways it's a little hard because DREDF is very specific about its mission and doesn't go after a lot of the money that maybe we could get if we would say we would do other stuff, and she said, "We just write what they want to hear." That's right; that's what they do [laughs].

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I certainly think there's a place for an international organization. It's really an important thing. I hope they can pull out of whatever is going on over there now. I wish that at some point they had taken their attendant care stuff--maybe they have--and utilized it in a legislative effort.

Landes

To get a national personal assistance service?

Cone

When Hillary Clinton was developing her health care plan, she had all these committees and subcommittees and I know that Simi sat on one of them. I think she represented PAS [personal assistance services] issues. But the people who are really pushing for personal assistance services are ADAPT [American Disabled for Attendant Programs Today]. They're the ones who have raised the issue. ADAPT used to stand for American Disabled for Accessible Public Transit or something like that. They changed their name but kept the same acronym. It's about getting people out of nursing homes and developing a national attendant care program.

I think that they are aware of what the critical issues are, but I don't know that there's a collaboration between them and WID or that they're able to utilize the research that has been done over there. I don't know if the research is up to date. But it is an absolutely critical step forward for people who need personal assistance services to be able to take advantage of all the rights that we have won through, say, the Americans with Disabilities Act. I don't know that they ever actually did anything; they may have just felt that the political atmosphere under Reagan and Bush was too difficult.

Landes

By "they" you're talking about WID?

Cone

Yes.

##

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Landes

We've been talking about your work with the attendant care research project at WID in the period of roughly 1984 to 1986. Is there more you want to say? How long did you work on that project?

Cone

For a couple of years, I guess. Beginning, I think, maybe at the end of '86--this is an example of "what is your mission?" I just was very miserable, and an RFP [Request for Proposal] came out from AC Transit.

Landes

You were miserable because of the problems with administration?

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Cone

No, mostly because I was doing something that I shouldn't have been doing. It was not my strength.

Landes

The research?

Cone

Yes. I was just on the phone gathering data, which anybody could do. As I said, Nancy Ferreyra, who was very smart but much less experienced in the movement than I was, I think was doing a much better job than I was. It was not something I was good at.

Developing a Program for AC Transit Accessibility

Cone

Around the fall of '86, I guess, an RFP came out from AC Transit to do driver training for the accessible services. I'm pretty sure an RFP came out. The reason I think that an RFP came out was because we had to get special status as a minority organization because WID was disabled-run, and it wasn't considered a minority organization, and you didn't get extra points for it. But in any case, we submitted a proposal which got funded to do this consulting contract on training the drivers. It was Hale Zukas and Pat Piras, who had been at the Metropolitan Transportation Commission for years prior to that and was now doing consulting privately, and me. She's now on the AC Transit board. And each one of us brought strengths to the project. I think it was a very good team of people, actually.

Landes

What were the strengths of the three of you?

Cone

Pat knew transportation systems very, very thoroughly. Hale had a particular understanding about the mechanical side, and I think I had a real understanding of the consumer point of view. And we all worked well together. So it was a good group of people. We just went to Joan or whoever and said, "We want to do this project." It really was not at all within WID's bailiwick, but it was money, it was going to keep paying us, so we were going to do it. And we wanted to do it, because AC Transit was having miserable problems at that point.

Landes

Problems serving disabled people?

Cone

Yes. They had gotten some of their accessible buses. By this time, the mandate for accessible transit was gone. The DOT 504 regulations had been overturned in court, so all the transit agencies around the country no longer had to be purchasing accessible buses. So the R&D [research and development] and all

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of the collaboration between transit agencies had slowed down. Transit agencies talk with each other about maintenance programs, driver trainings, specifications and all sorts of stuff. There just wasn't collaboration on the issue of accessible transit.

So all the things necessary to make the program go forward were falling apart at AC Transit. They decided that they were going to do this training program. What happened was we started interviewing drivers, and they were identifying problems that were so basic that it didn't make any sense to train the drivers. Because if we had trained the drivers, we would have just raised their level of cynicism about the program.

Landes

What were these basic problems that they told you about?

Cone

For one thing, there were severe mechanical problems with the lifts. A lot of the lifts didn't work. Way back earlier on AC had adopted a policy that they were going to have sixteen lift mechanics, but as it turned out they only had one. And they didn't have all the parts stocked. Furthermore, a driver did not know until they got on the street whether or not their lift worked because they were supposed to cycle the lift in the yard, but the buses had to be lined up in what's called a herringbone fashion in order for them to cycle their lift, and there needed to be time for them to cycle their lift, and if their lift didn't work, for them to get another bus. It just wasn't happening. It just wasn't happening because there was a lack of will coming from the top down.

At that time AC Transit had gone through a series of managers. There had been tremendous managerial changes, and I'm sure the accessible services program was the last issue on their mind.

Landes

So as you're in the process of beginning to train these drivers, they're telling you of all these systemic problems. Did that change the nature of your project?

Cone

Absolutely. We just said "We're not going to train the drivers." We're not going to go in and talk to the drivers about all of the policies and procedures that need to be followed such as what to do if someone cannot tie themselves down, what to do if someone cannot speak, what to do if someone is deaf, what to do if someone cannot hand you their fare--all these kinds of issues.

The most basic question was "Why do you stop when there's a person in a wheelchair sitting at a bus stop?" At this point people were being passed by by drivers; they just didn't want to

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stop because they were afraid their whole bus would be put out of service because of a malfunctioning lift. Drivers were sometimes being discourteous, and the lifts were breaking all the time. There was a series of problems that were pretty profound. We actually knew that those problems existed, and we really wanted to get in there and try to stir it up a little bit, and I think that we did. We didn't really expect that we weren't going to be able to train the drivers, though. The problems were much worse than we ever anticipated.

Landes

What do you think that project accomplished?

Cone

We submitted the report, and it got a certain amount of publicity, and they did begin to hire more mechanics. They did begin to order more parts. I believe that they began to implement some of the suggestions that were made in the final report.

Landes

Was this because of your final report or was there pressure coming from consumers also?

Cone

Oh, always there was pressure coming from consumers. We used to go and sit in the advisory committee--it was called the Accessible Services Advisory Committee. There was a guy running it who was a wheelchair user himself, and he was very frustrated. He ended up leaving and some new person came in, and problems continued. One of the things that happened was that they began to order a different kind of lift that was much easier to maintain. I think we may have made a recommendation about the lifts. They had a number of different types of lifts; I think they had three different types of lifts, as a matter of fact, and on different types of buses, and that was a problem as well from a maintenance point of view.

Landes

How long did that project go on?

Cone

It lasted about a year.

Landes

So you were working on this during most of 1987.

Cone

Yes. I guess it started at the end of '86, and then two things happened: the SAAT demonstrations happened, and then--

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Organizing the September Alliance for Accessible Transit, September 1987

Landes

What does SAAT stand for?

Cone

September Alliance for Accessible Transit. SAAT/ADAPT demonstrations. The other thing that happened was immediately following that, my son Jorge got really sick. I simply dropped off of the project and was not involved in the finishing parts of it.

Landes

But prior to his getting sick you did become quite involved in the SAAT demonstrations, correct?

Cone

Yes.

Landes

How did you get involved in that?

Cone

ADAPT [American Disabled for Accessible Public Transit], which was then focusing on trying to get the American Public Transit Association, which is the trade agency for all the transit operators around the country, to change their position opposing accessibility--both organizations were coming to San Francisco.

Landes

ADAPT and APTA [American Public Transit Association]?

Cone

Yes. Wherever APTA had a national conference or even a regional conference, ADAPT would go and demonstrate, using civil disobedience tactics and they always got a great deal of attention. I think the name of their newsletter is Incite!. I would call them a sort of flying wedge of demonstrators that went from place to place. Some of them were very experienced community leaders in their own communities, like Mike Auberger and a guy from Atlanta and some people from Texas. There were some experienced leaders, but a lot of the people were just people who were committed to the cause, and I think that they were not even working; they were just demonstrating. It was a very important cause to them.

Landes

So they were a group of very committed activists.

Cone

Yes. The leader at that point--which I think was a problem for some people--was Wade Blank, who was a minister from Denver. People thought of Wade like Martin Luther King or Jesus or something. Wade was absolutely committed, but he wasn't disabled. At some point I think he and his wife adopted a disabled daughter. He tended to be a main organizer and fundraiser. He played that

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role. I think some people had an objection to that. I kind of thought it was a little strange myself.

Landes

Just that he took this rather individualistic role as leader of that organization?

Cone

Yes. There were definitely very competent spokespeople and leaders within the organization, because Wade unfortunately drowned a few years ago in Mexico, and ADAPT has kept going with disabled leadership.

They were going to be coming to San Francisco. APTA was going to be having a national conference at the Moscone Center. The delegates and members were mostly staying at the Hilton Hotel downtown at Union Square. One of the things that ADAPT frequently did was to go and storm into the hotels that the APTA people were staying at. Another thing that ADAPT would do was block the buses. They would block whatever form of transportation existed in the community, and they would get arrested. They would go into a community in advance and do a training for the local people. In a number of places they had, I think, turned off the locals because they weren't sensitive to what the local concerns were. In other places, I think the local people thought it was fine. But there had been divisions that occurred. We were aware of that.

So they brought in a movie and some people to talk about what their plans were for the days that the convention was going to be going on. All the clips of the coverage that they had gotten, it seemed to us, focused more on the fact that they were getting arrested and the conditions in jail, and how long they were staying in jail, than it did on what the issues were. Why are these people so committed to the issue? They had t-shirts that said "We will Ride!" and it was clearly linked to APTA.

I think the local disability leadership was afraid; we had really good relationships with the press in the area--the media tended to take us very seriously. If we wanted coverage on something we could get it. We had done a lot of work on transit; we had done demonstrations on transit where we had gotten coverage, and it tended to be about the issue of transit. I mean, if we got arrested they showed people getting hauled off to jail or sitting in front of the buses, but they did write about the issue because we gave knowledgeable interviews about the issue. We were very concerned that ADAPT was going to come in and that the issue wouldn't get clearly explained to the media.

Landes

Leaders of organizations of people with disabilities or the transit agencies?

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Cone

Oh, no--the organizations of people with disabilities. I think Judy Heumann and Mary Lou Breslin and I--because I had a long history of doing transit work--and Hale and Richard Olcese and a number of people decided that we would organize a local organization called the September Alliance for Accessible Transit to be a local force. We had our own t-shirts and everything [laughs].

Landes

As a type of buffer between ADAPT and the convention?

Cone

Not as a buffer, but as somewhat of an alternative leadership because we wanted to make sure that we got good media coverage. That really was the issue. We didn't want to completely alienate. At the time, Muni [San Francisco Municipal Railway] was doing a fairly decent job at implementing their accessible services; they were really making an effort. We didn't want to have complete alienation between the community and the transit authority in San Francisco. But the main issue was we figured if this is going to take place, we want to be there so that it doesn't look like the local community isn't supporting it. But we don't want to just go in, get arrested, and follow ADAPT's leadership. That was how SAAT came about. There were real undercurrents. I mean, we were collaborating with ADAPT, but there were real undercurrents.

Landes

In what ways were you collaborating with ADAPT prior to their arriving in San Francisco?

Cone

I think we were talking to them. Marilyn Golden was chosen as the coordinator. Marilyn at that time was very interested in becoming a political organizer. She was younger than everybody else. We all thought she was very competent and very smart and would be a good person to get trained in this cauldron [chuckles]. So Marilyn took on this organizing job, and she had very good relationships with the ADAPT people, I believe.

We were organizing SAAT meetings prior to when the thing happened, and then I think that the leadership of SAAT moved into not the Hilton Hotel but into some hotel downtown because we figured there was no way we could be going back and forth and still keep on top of what was going on. We moved into the hotel where ADAPT was staying, so we participated in all the big ADAPT meetings. We were not functioning really as a separate organization; we were a caucus within.

Landes

You were collaborating with ADAPT.

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Cone

Yes. If we couldn't convince them of our strategy--which on a number of occasions we couldn't--then we did whatever their strategy was and tried to get the press to talk to us, which they tended to do because they knew us.

Landes

So what did ADAPT attempt to do?

Cone

One area where we really disagreed with them was they wanted to block the cable cars. I think it turned out that they were right in the long run, but I didn't think it was the best thing to focus on.

Here's an issue where we didn't agree. We thought that that makes us look frivolous. People in other parts of the country have no transportation whatsoever. Here we have BART and we have AC Transit and Muni and some paratransit, but most communities in the United States didn't have any accessible transit. So we thought that focusing on the cable cars--it is a way to get from one place to another, but it's a complete pleasure thing, a tourist thing. To focus on the cable cars was not viable. People had supposedly come in and looked at it and said there wasn't a way to put lifts on and they were protected by the Historical Preservation Exemption, so they weren't required to put lifts on the cable cars. Well, now there are lifts on the cable cars, so they clearly were able to do it. But we thought, "Is this really the best target?"

But we went in front of the cable cars, and I got arrested in front of the cable cars. Whenever we got arrested, instead of saying, "I have my rights! What are you doing? Why are you taking me away?" [laughs] or something like this, we would just say "We need transportation." It was just like a mantra. "We need transportation to go to work, to go to school, to go to places of worship, to take our children out, to go grocery shopping. We have a right to ride the buses like everybody else. And that's what this demonstration is about." So we'd be being hauled into paddy wagons, but we'd be screaming about transportation [laughs]. Sometimes that was all that happened, but it also generated a lot of interviews. Marilyn did a lot of interviews, Judy and I did a lot of interviews, and the ADAPT people did some interviews, but we definitely got more coverage than they did [chuckles] just because we were the local people.

The way the thing was organized, we had a rally with a variety of speakers from Ellie [Eleanor] Smeal, who was the executive director of NOW [National Organization for Women] at the time, to Cecil Williams of Glide Memorial Church. State Senator Leo McCarthy spoke, I think. There was this big rally at Union

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Square with speakers and the platform and all that jazz. There were ADAPT speakers, and then we were going to march past the Hilton Hotel and down to the Civic Center where APTA officials were being hosted by, I guess, the mayor. I think there was some kind of big reception inside City Hall.

So we marched down there--this is the first day--and we're blocking the APTA people from getting in. I've seen some incredible photographs of that time, and all the SAAT people I think are wearing blue t-shirts, all the ADAPT people are wearing green t-shirts, and we had monitors. I remember bringing a lot of my own friends personally who were disabled and non-disabled, and Carol Weinstein, who had worked with AC Transit. A lot of people were there, and a lot of protesters in wheelchairs. They were holding on to each other's wheelchairs, and the APTA people were just determined to get through, and they were like rocking the wheelchairs back and forth.

And the next thing the cops are there and they're arresting people. I think I must have been the first person to get arrested, although I don't understand [laughs], because I was the one who ended up on TV. Or it may just be because they knew me. But I think I was the first person to get arrested, and I wasn't provoking or anything; I was just there. Then Mary Lou, who was just [laughs]--Mary Lou did not want to be arrested. She considered it an indignity and a waste of time. Mary Lou was sitting to the side [laughs], and they came and got her and she said, "What are you doing? I'm not even doing anything?" A bunch of people got arrested, and they basically let everybody out that first night.

Then the next morning Tom Rickert from Muni had organized a meeting because he just couldn't believe that APTA officials would not be amenable to understanding how good access was. I think he had come out of some Peace Corps background or something, and he was doing a very enthusiastic good job at making accessible services work at Muni. He convinced the Muni general manager, I believe, to call this meeting at the Hilton Hotel that started at some godawful hour in the early morning. Actually, we were not staying in the hotel yet, because I remember driving over to this meeting with Mary Lou and Pat Wright. Mary Lou, Pat Wright, Judy Heumann, Marilyn, I, I think Michael Pachovas, Jane Jackson, and a bunch of people from ADAPT went to this meeting.

Landes

Which was held where?

Cone

It was held in the Hilton Hotel.

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##

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Landes

So there was a meeting in the Hilton Hotel.

Cone

Yes, with us and Muni and APTA.

Landes

That had been facilitated by Tom Rickert?

Cone

Yes, he had pulled it together. We get to the hotel, and it's Pat and Mary Lou and I, and we agree that our little contingent will meet Tom Rickert at the accessible entrance. There was only one accessible entrance into the hotel at that time, and it was a corner door.

Landes

There's a main entrance to the Hilton Hotel.

Cone

Now there is, but in those days there wasn't. It was just one door. And it was locked. And they had deliberately locked it. The reason they locked it is they were worried about ADAPT, but it is completely against the law for them to have locked the only accessible entrance. So Tom says, "Let's go through the garage." And I'm like, "Wait a minute, Tom. We don't have to go through the garage. This is an accessible entrance. They need to open this door." He says, "We're going to be late for the meeting."

I said, "Tom," and I'm complaining the whole way; I was very upset. I thought it was totally insulting that they had locked the door. Tom later apologized to me. He said, "I knew you were upset. I didn't think you were right, and now I realize you were right." So we go to the basement, and I think that they practically frisked us--I can't remember. They have some sort of security thing, and they take us to one floor, and then they put us on some elevators and they take us to another floor and we get off, and the meeting is happening.

The guy who was the head of APTA--Jack Gilstrap--the general counsel for APTA, and some other APTA higher ups--vice presidents and what have you--are in this meeting. I was charged with a certain amount of responsibility for articulating our issues, I guess because I was experienced in transit. We said, "We're here because we want you to make a commitment to accessibility of mainline transit services and to drop your opposition with the Congress and in the courts and to adopt a policy that you will work for accessibility."

They said, "Well, we're willing to take a look at it, and we're willing to do a study." We said, "We want your guarantee that you will." It was a completely ineffectual and unsuccessful

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meeting, which we knew it was going to be. We didn't have any illusions going into it that it was going to be effective. I think that I might have been introduced as someone who was working on a contract for AC Transit, because I was at the time.

Then we go out of the meeting and the APTA general counsel says to us, "Okay, get out of the building now." Like that. And we said, "What?" Because the meeting was like at six-thirty in the morning or something, and we knew we had a full day's worth of demonstrating left [laughs]. They had had some coffee and tea, but that wasn't--. As soon as they said to get out of the building, we were determined we weren't going to leave the building, so we said, "Who are you to tell us to get out of the building?" and they said, "We were told that if you came to this meeting you weren't going to stay here; now get out of the building." They were afraid we were going to take over the building, us eight people or something.

So we said, "We have no intention of leaving the building. We're going to the coffeeshop to have breakfast, and you can't stop us." [laughs] It was completely outrageous.

So we went to the coffeeshop and had breakfast and went to the bathroom and started to go out the accessible door, and you know that yellow tape that you put up in front of construction or a hole.

Landes

It may also say "Police Line. Do Not Cross."

Cone

Yes, something like that. It was across the door. That hadn't been there in the morning when we came. At that point we were like "What the hell is this?" So we said, "Okay, we're not leaving until you take down that tape." And we got the security. And all these APTA people are going up and down the escalators and they're looking at us like we're complete freaks. They clearly are so turned off by people in wheelchairs [laughs]. Actually Judy and I were all dressed up because we were supposed to go on these panels.

Landes

You were to participate in the APTA program?

Cone

Yes, which we agreed to do in order to get ourselves inside the building [chuckles]. I was presenting on how if you have collaboration with the community you can develop a system that works, and what the lack of a national mandate does to a transit authority that really wants to go forward with accessibility, and I was using AC Transit as an example. I had worked very hard on the paper; I was looking forward to being in there and being a

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rational person, a disabled person who had some experience from the inside as well as the outside about how it can work well and what things make it work poorly, and how if you have 50 percent accessible buses you'll never have an accessible system and you'll never get ridership up, and all these things. I think Judy never even prepared anything, because I think she knew we weren't going to get to give our papers.

Then Pat Wright went and got Cecil Williams, who came over and spoke to the security people and said, "I'm Reverend Williams." You know how Cecil's a power man in San Francisco. So there was no way they weren't going to pay attention to Cecil. He said, "These people are speaking at my church in the next fifteen minutes. You'd better let them out of the hotel." They took down the yellow tape and let us out.

Then we all went over to Glide Memorial Church where Cecil was having a special service about the transit thing, about what was going on. Judy gave a talk, and we all went to the service--did you go to that service? So we all went to that service, and then Judy and I had to register and pick up our delegate kits. We weren't delegates; we were participants. So we went back to the Hilton and back to the accessible entrance, and at that point the Hilton had erected a fake construction set. It was so bogus that there was no way that it could have been considered real construction. I mean, we had just gone out that door, right? So we knew there was not construction going on. I think there was like a wheelbarrow and a shovel and some big machine and a sawhorse and stuff. Then it said "Closed for construction" or something. This was a Sunday, mind you. So then we all got outside the door and just made a fuss and got some press coverage --the Hilton Hotel has lost their minds and they've just set up this fake construction thing [chuckles].

At that point I think Arlene decided this is outrageous and they need to be sued. Arlene Mayerson and Diane Lipton from DREDF and some other people--I think Leslie Levy, a very nice woman--were acting as legal observers, so they got photographs of us sitting outside trying to get in to get our registration packets. I think Pat Piras brought out our packets to us from inside. So we got our packets. We had badges so we could get into the conference.

That night we decided--we knew that ADAPT was going to be demonstrating outside, and we decided that it was wrong to participate in the conference after what had happened, that they were just treating people like shit and that we weren't going to go in and dialogue with them when they had made absolutely no

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commitment to even think about accessibility in this meeting. They clearly put the Hilton up to erecting this barricade and stuff.

Judy and I wrote this statement saying that Pat [Piras], who was also on our panel, would read to the participants and then she read my remarks, which was like ten pages long. It was a presentation. Judy and I essentially said in our statement that we're outraged by the humiliating treatment that we've received and this trampling upon our civil rights, and we're not going to participate in the conference, and we're very sorry; we were looking forward to a fruitful dialogue. But given your continued articulation of your refusal to even consider a national accessibility mandate we feel we cannot participate.

That night there were strategy meetings in some big room in the hotel.

Landes

In the hotel where you were staying.

Cone

Yes. I don't remember where it was. It was not a fancy hotel like the Hilton, though.

There were a whole series of demonstrations. There were demonstrations blocking the Muni buses outside the Moscone Center. There was one big demonstration at night, which might have been outside the jail. That was maybe a couple of nights later on. I believe the next day Judy, Hale and I and our attendants--I think that's all there were--went into the APTA conference--because we had badges we could get in--and we went to the plenary session, and when it was just ending we went up to the front. It was huge in the Moscone Center; fortunately Judy has a good voice, so we started to sing "We Shall Overcome" right there, and they just all got up and walked out for the most part [laughs]. But the press was there.

So then we went to look at the different buses that they had. That also gave us an opportunity to talk to the press. I remember not remembering all of the coverage that we got, and later when I was deposed for this lawsuit against the Hilton and APTA for having completely blocked the doors and excluded people from going in and out, APTA's lawyer, who later became a DREDF supporter, said to me, "Yes, I saw that coverage, and you made some very good points about equipment and maintenance." He basically complimented me on this one interview that was the calmest interview I did, because it was downstairs with the different buses, and I talked about the advantage of the low-floor ramped TransBus and the need for some sort of universal tie-down

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and the need for the wheelchair companies to work with the bus companies. I was just rapping about different stuff.

Landes

He appreciated your technical knowledge.

Cone

Yes. But for the most part we didn't have a real opportunity to do that. Although one of the things that happened was there were interviews in the paper, and Marilyn did a really good job on Jack Gilstrap, who was the head of APTA. He was at the meeting we were at, and he also appeared on People Are Talking. It was a popular morning talk show--with Marilyn. Michael Landwehr and Mary Lou and I and other people went to that show. Marilyn did an excellent job; Gilstrap looked like a boob.

They called on all of us in the audience who were in wheelchairs, and we all made very good points about, like, the problems of living in Chicago. I think I talked about the problems of Chicago, and so did Michael Landwehr, and we talked about the difference between living in San Francisco where there's BART and where the Muni was becoming accessible, and how hard it was in Chicago where there were no buses and people are spread out all over, and how could paratransit possibly function on any kind of cost-effective basis? Why didn't they make the El accessible? I think Ross McGowan or Ann Fraser, one of them, was from Chicago, and they really got into it. They started questioning Gilstrap about Chicago [laughs]. We got good publicity out of it. It didn't come across as really wildly antagonistic; it just came across as "these people need to be able to ride the buses, and this is what's happening."

Landes

What's your assessment of the SAAT and ADAPT collaboration?

Cone

I think we were too afraid of ADAPT. I think that they are a valuable force, because they do keep demonstrating, they keep the pressure on, and they sure are keeping the pressure on around attendant care. I think that they were probably too inconsiderate of the local leadership's wishes about how to handle issues--not just in the Bay Area, but in other areas also. But I think they conceived of it as a national issue, and they were the national response to APTA, so they had the right to go in anywhere and act as they did.

There were some pretty intense meetings. I remember one meeting that somebody from ADAPT and I co-chaired. I think it was one of the few meetings where Wade Blank didn't just get up in front of the room and say, "Here, we're going to do this." There were proposals from the floor and there was discussion and votes. At that point, I think Mary Lou and Marilyn possibly and Judy were

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all in jail. For some reason we all got arrested at the same time, and they let me out [laughs] but kept Mary Lou and some of the other ones overnight.

Landes

Do you feel that the SAAT/ADAPT demonstrations were successful in getting the issues out to the public?

Cone

Yes, at least in San Francisco. People understood--if they were watching TV and reading the paper and listening to the radio--that there wasn't transportation that people who are mobility impaired can use all over the country, and that this was a big national civil rights issue. I'm sure they understood that.

Landes

Do you think there was significant national coverage that you know of?

Cone

No, I don't think so.

Landes

Is there anything else you'd like to say about those demonstrations or the collaboration with ADAPT?

Cone

I wish there hadn't been such distrust on both sides, but there was. But I don't think it actually got in the way; I think it probably in some ways made it better [laughs]. Who knows?

Landes

In the sense of realizing that these two groups could work with one another?

Cone

Yes, and I think that had they come in without our organizing something as well, they wouldn't have gotten anywhere near as many people to participate. Had they come in without our participation I don't think that the actual issues would have been articulated as well. There certainly was more lively stuff going on as a result of the fact that we--there was just continual action of different types going on. I think it didn't hurt to say that Judy and I were presenters at the conference, and how dare they treat us like we were less than human.

Landes

In the fall of 1987 your son Jorge becomes sick. What happened?

Cone

I'll never know. It happened the beginning of December. He started spiking fevers of like 104 [degrees Fahrenheit].

Landes

How old was Jorge at that time?

Cone

He was six. He went from being this robust little soccer player to being a limp, yellow, stiff disabled child. They couldn't figure out what was wrong with him, and it went on for two months,

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and every single day he would spike a fever about every three hours and he would have to have Tylenol. So I took him to his homeopathic regular clinic, and they tried treating him, and they couldn't do anything, and at one point his fever went up so high I took him to the emergency room, and they acted like "you're giving him homeopathic remedies, you've giving him [belladonna] what is this?" and they gave him a huge dose of Tylenol. Then I told the clinic that nothing is working, so they said I've got to take him to a pediatrician. So I got a pediatrician, and they started doing all these blood tests and put him in the hospital. By this time, he was having real problems walking. Really bad pain in his legs and arms and he wasn't eating. He didn't eat anything for two whole months.

Landes

What impact did this have on your working life?

Cone

I just stopped working.

Landes

You stopped working at WID?

Cone

Completely. I was with him morning, noon, and night.

Landes

In December of 1987?

Cone

December and January and the beginning of February. Then I took him to this old Chinese healer who gave him herbs and cured him. After they had said they thought he had leukemia, and they thought he had juvenile rheumatoid arthritis. All of the diagnoses that they were coming up with were really scary to me.

Landes

So this caused you to drop your work.

Cone

Yes. I was at the hospital all the time, and I was with him all the time. I needed to be monitoring his fevers and stuff; it took him a while to get well. The AC Transit contract finished up while Jorge was sick.

Landes

So you did not participate in finishing up [inaudible]?

Cone

No. There was just no way I could work.

Landes

Who was supporting you in helping with Jorge? Were you doing this alone?

Cone

Pretty much, yes. The person who was really incredible was my attendant, Chela [Graciela Rubio]. She had been my attendant ever since 1982. She went down and stayed with me in the hospital. I stayed with Jorge, which was really necessary because one nurse in

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particular was not tuned in to when he was beginning to spike a fever, and I could tell because his body would begin to shake and he would begin to babble hysterically--just mumble and stuff. So anyway, Chela went down and stayed with me and she would sleep on the couch and I would sleep on this window bed. I went down every night. I stayed there, I bathed there--I had a big fight with them about my right to take a bath. They were worried about liability, but I just muscled up.

I remember that Christmas was very depressing. I asked the pediatrician if there was any reason for him to stay in the hospital over Christmas, because they weren't doing anything except taking tests. She said no. So we came home--we didn't have a turkey [chuckles]. A friend brought some rolls and some stuffing, and my brother flew out. My other attendant got this little tree. I've got these pictures of Jorge, and he's this teeny, skinny stick that's yellow-colored. The poor little guy--it was just awful. Anyway, this Chinese doctor gave him herbs, and basically pulled him together.

Working at CIL Once Again

Landes

So you were then able to go back to work?

Cone

I didn't for a while, because he was very frightened and angry. So then I guess after about a month I went and got a job at CIL. I just went in to Michael Winter and said that I need some sort of job, that I need to earn some money. He said, "Do you want to work on this Jobs Partnership Training Act [JPTA] grant? Will you recruit some disabled people who are looking for training on how to get a job?" So I was doing outreach. I was particularly trying to do outreach into minority communities--you know, through churches and that kind of thing.

Landes

You started that in spring of 1988?

Cone

Yes. The job was a couple of months. I think that's when I did it. Then I left in June. Jorge and I went to Mexico.

Landes

Tell me more about the job at CIL. You were doing outreach for JPTA?

Cone

That's all it was. It was three hours a day, I think. I think they paid me twenty-five bucks an hour or something.

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Landes

Did you feel that you were doing a successful job at that?

Cone

Oh, yes. It was no big deal.

Landes

And how was it working at CIL at that time?

Cone

I believe that Michael Winter, who was the executive director at that time, really tended to want people who were very loyal to him working there. That was about the end of a period of tension at CIL, where Michael was slowly getting rid of people who he felt were not on the same wavelength as he was. I want to say he was a jolly presence, because Michael has got a personality that is very ebullient. Also, I think he inspires a lot of confidence just because of his own confidence in himself. But I also think he was somewhat dictatorial. It was okay for me.

[A brief passage has been withheld from on-line publication.

Landes

So you felt that morale was good at CIL?

Cone

I think better than it is now, possibly.

Landes

Do you feel that they were being effective in serving the disabled community?

Cone

More effective than they were a few years later, yes.

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Landes

Kitty, you finished the job at CIL in spring of 1988. Then that summer you went to Mexico with Jorge. Why did you go to Mexico then?

Cone

I wanted to do something really, really nice for Jorge. I love Mexico, and Jorge is from Mexico--it's his heritage. I decided that I would drive down, and I organized this series of drivers to the border and then from the border. We went down to Manzanillo, where I had friends, and my friend Ceci [Garcia Molina] had found a house, which I bought. A little teeny house with two bedrooms right near the ocean. We had an absolutely wonderful summer.

Landes

How old was Jorge?

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Cone

Jorge was six. He had such a different experience. Where we lived in Berkeley, he couldn't run around freely. In Mexico we lived in this neighborhood where cars were not allowed. There were posts that kept cars from coming in. The kids would get together in a little group and play soccer together. Then Jorge started going over to the big soccer field and playing soccer with kids over there. He went swimming. He made really good friends with the son of one of my friends from when I had lived there before--Rogelio. So he and this boy who was exactly his age spent every day together.

Actually, he had a group of about three other boys that he hung out with. If they were hanging out and it was lunchtime, somebody would feed them. This is Mexican culture. Somebody was always watching out for them. I don't mean to say that I was not paying any attention to where he was; there was always some oversight. But he learned to love things like going to somebody's house where the mother makes homemade popsicles and sells them for a nickel. Or every evening the man would come around selling pan dulce--sweet bread--and Jorge would always go running out with me to pick out the pan dulce. He went to a lot of piñatas and he got mangos off the tree.

He loved it, and we haven't been back since then, and he's asked me over the years, "When can we go back? Why don't we ever go back to Mexico?" I just haven't been able to do it again because of my work situation. But we had an absolutely idyllic summer. I dedicated myself to getting this house in order. Different people came and visited us. One of Jorge's schoolteachers came and visited us with his family.

Landes

One of his teachers from Berkeley?

Cone

From Berkwood Hedge, yes. I remember one time we caught this gigantic toad. It was the biggest thing I'd ever seen. We put like a little leash around its neck and hopped it off to the swamps. We'd pull loofahs off the trees and dry them. We went on a lot of picnics to the beach where we would cook out. I had a lot of friends that I had known there before, and they had kids by this time. It was very, very nice. Then we had a party before we left. It was a birthday party for my attendant. It was a typical big Mexican party where you invite everybody, and then they bring everybody else, and so we had lots and lots of food, and we hung lights outside, and the kids put on performances and stuff. Jorge got totally into Spanish rock and roll. When we came back I used to go to the Mission and get cassettes for him by the Spanish groups that he liked. That lasted for a few years. Anyway, it

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was an idyllic summer. Then we came back when it was time for him to go back into school.

Medical Problems Delay Return to Work, Winter 1988-1989

Landes

Did you go back to work?

Cone

What happened is I got back and I went to the doctor for a checkup before going back to work. They couldn't get my blood pressure. They said that it was too faint. The nurse couldn't get it. So the doctor said to me--I think this is almost malpractice, looking back on it--"Well, we can't get your blood pressure here. Why don't you get one of those home kits and keep track of your blood pressure and then just call it in?" So I went out, bought a kit, and it was one of the digital ones. First I tried one of those ones that you use on your finger, and my blood pressure was too faint. It was not registering correctly. I don't know if it was because my blood pressure is so faint or if it was because there was something wrong with this machine, although it was new and it had batteries in it. But it was recording my blood pressure higher than it actually was.

I called in and she said, "Gee, that's way too high. You should increase the dosage of this medication that you're on." So she had me double the medication. She said, "Keep track of your blood pressure." So I was keeping track of it, and it was still high. I called in again, and at this point I think she should have said, "Come into the office. We're going to really do some serious testing" or something, because this is like a fairly short period of time--maybe three weeks later.

Landes

You had had no history of high blood pressure?

Cone

I was on medication, but it was a low dose. I was on twenty milligrams, she got me up to forty, and then she got me up to sixty, all within a very short period of time. I just had a horrible, horrible reaction to it. I reacted to it so badly that I couldn't even realize that I was having a reaction. My brain biochemistry just couldn't handle it. I was nauseated, I was very confused mentally, and I became extremely depressed. I was just crying like four or five times a day. I couldn't get out of bed. I've never been a really depressed or unhappy person, and I was just so sad about everything.

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Landes

You were overwhelmed by this additional medical problem, or was there a physical basis for the--

Cone

No. I was having a physical reaction to the medication.

Landes

And that was causing the depression?

Cone

Yes. Absolutely.

Landes

Do you have any recollection of how you felt at the time about the fact that you had this new complication?

Cone

I was just so out of it that I couldn't figure out what was the matter. This went on for a couple of months, and I knew I couldn't work. I felt physically like I was just being dragged down. I would call up my friends and I would say, "I'm so depressed, I'm so depressed," and I would just start crying. I didn't have anything really that was depressing me. Then I became more depressed because Jorge was reacting to my depression. I started seeing a therapist and she said it's normal for a kid; they will try to mobilize the parent out of the depression by acting out or something. He had lost me for all practical purposes. I was just a mess.

So finally one day, I was supposed to take him to a Big Brothers' picnic. When you were waiting for a Big Brother, they had these different activities that they would have for the waiting children. It was a picnic or something, and Jorge had been somewhere with Kathy and she brought him in and I said, "Can you please take him to the Big Brothers' picnic? I can't go. I just can't function." I was crying hysterically, and she said, "You know, you are not right. This is not you. I have never seen you like this before. I think it's this medication you're on. Call the doctor right now." It was a Saturday, so I called and said, "I'm feeling really miserable, and my friend thinks it's the medication."

So this doctor who was not my doctor asked me what had happened, and I told this doctor on the phone. The doctor said, "Cut back to your original dosage and go to your doctor on Monday." So I go in to the doctor, and she took me off of that and put me on another one. I don't know what happened, but I think it just ruined me in terms of my ability to handle these different types of medications. Then I went on this almost ten-month period where I was trying to take different types of blood pressure medications. I don't know whether it was the disability, I don't know whether it was because I was a woman or what, but I ended up going to a specialist, a nephrologist, a kidney

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specialist. He thought I was just depressed and that I had focused on the blood pressure medication.

Finally I realized that I needed to keep track of the meds, because I had--I don't know how many medications I was on. For a while I was off of all meds, and I was okay. Then I went on Inderol, which is a beta blocker, I think. There are these different categories of blood pressure medications. I was fine in between, but I had to get on something because my blood pressure was high. So they put me on Inderol, and I gradually sort of sunk into this almost passive, suicidal attitude like there's nothing of any--there is no joy in life, there's no meaning, and what's it all for?

Landes

And this is fall of '88 and winter and spring of '89?

Cone

Yes.

Landes

What pulled you out of all of this?

Cone

I finally ended up going to a different doctor who developed a combination of drugs. One, to sort of counteract the effects of the medication I had to take, and I also started having acupuncture every three weeks. The acupuncture was really, really good at controlling the side effects of the meds. I know that it was the meds because every time the doctor would take me off of one, after a couple of days I would get back to normal. I would be like, "Oh, yeah, the sun is shining again. I love my kid. I have friends. Life is good." And then he put me on another medication and I would have--sometimes it was much more physical. Sometimes it was like I would just literally not be able to get out of bed; it was like I couldn't watch television because my head was swirling around so much [laughs].

Landes

What role did your friends play during this period?

Cone

They were so important to me. The role that they played greatly influenced my desire to live with a group of friends or in some kind of close setting with my friends when I get older in case I become senile. At one point my really good friend Charlotte [Rubens], the one who had taken me to Mexico to look for a house when I was getting ready to adopt Jorge, started going with me to the doctor and she said to the doctor, "She is not a depressed person. You need to understand that when she tells you she's having side effects, she's having side effects. Furthermore, she's got this list of side effects from eight different medications, and if you put them in categories you will see that every time you give her a calcium channel blocker she gets the

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same kind of reaction." He said, "Well, that's because it's the same drug."

At that point I said, "Well, why are you doing this?" So Charlotte acted as my patient advocate or whatever you call it. But she also organized my friends to call me up and make sure that I was okay and to come over and see me, because I was really, really a mess.

Landes

But the depression that you were feeling was due to the side effects of the medication.

Cone

It was chemically induced, because as soon as they took me off those drugs I would be fine. In fact, at one point the drug of last resort was going to be diuretics. That was going to be the last drug that we tried, because I said, "I can't go on diuretics. I have to be taken to the bathroom by an attendant." Finally we decided we would try the diuretics because they don't have the same kind of side effects except making you have to go to the bathroom all the time. I felt great on the diuretics but my blood pressure just shot straight up; it was higher than it had ever been.

My body and my mind just were having a real hard time. I did indeed become depressed about the situation. I thought, How am I ever going to deal with this? I don't want to have a stroke or a heart attack, but I also can't be on these meds. I consulted a doctor--a specialist--about different pharmacology, who told me that his own father had come to visit him just after beginning to take Inderol. He was an elderly man, and he had taken off his clothes and was prowling around in the bushes outside. He said, "Dad, get the doctor to give you another medication." Drugs are powerful. People go off their blood pressure medication and boy, do I understand why. It also messes with your sex drive, but that's a whole other issue. So I didn't feel like I was in any position to take any kind of job that required much mental acuity at all.

Reflecting on CIL: From Political Activism to Social Service Provider

Landes

When did you go back to work? Or when did you begin to do political work again?

Cone

I started working at CIL, I believe, in January of 1989.

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Landes

During this period in which you are depressed and experiencing the side effects?

Cone

Yes. With the right kind of job I wouldn't really have to rely on my wits as much. So I called up Michael [Winter] and said, "Michael, I have to work, but I'm having a real hard time physically. Have you got any jobs?" He said, "Do you want to run the attendant referral department?" I don't think I was the director; I think Karyl Eckels, who was the head of all the services, was the director. I thought I could run attendant referral in my sleep, so I said sure. I went in and I was interviewed and got the job. CIL was very good about accommodating me at that point. They hired this young woman to work with me, to help me with all the typing. I did the interviewing of the attendants, and I took orders for attendants over the telephone and placed them in the book and helped people when they came in and were having attendant problems, or helped attendants who came in who felt that they had been abused. It wasn't a particularly taxing job.

Landes

Did you feel you were being effective at it?

Cone

I thought I did a reasonably good job. I think had I had all of my wits about me I would have been better.

Landes

Did you think that the attendant referral department as a whole was doing an effective job recruiting and referring attendants?

Cone

Yes and no. I did a fairly good amount of recruitment. I think we put ads in the Oakland Tribune, we put ads in the East Bay Express, we put ads in the Daily Californian, and we got a lot of people who came in who wanted to be attendants. The problem was that it was just plain difficult because minimum wage was $4.25 an hour. That's what the attendants got paid. It was very, very hard to find people who were good people and who were able to work in that kind of situation with that kind of pay.

So the same old situation was going on where people weren't getting enough hours, and we had a lot of people who were not legal to work. We had to see people's social security card and we had to have their picture ID. We checked their references and stuff, but sometimes people slipped through, and there were a number of people who were really bad eggs who got into the system. I don't know what's going on over there now, but I haven't found anybody--every time I've tried to use the list I have not been able to find anybody that was helpful to me. But I also require a--

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Landes

Have you sensed a change in who was answering those ads at that time that you were working there in 1989 compared to say fifteen or sixteen years ago, previous to that, when you first started working there?

Cone

Yes. I think I might have talked about this with you before.

Landes

It seemed as though there were more people from the counterculture or more people that were doing it for political reasons rather than simply for the money.

Cone

Absolutely. In the early seventies, it was still a period of radicalism in Berkeley to a certain extent. Being an attendant was a way of sustaining yourself financially and also playing in a band or doing political work or just bringing in enough income to do your own thing. I think that economic conditions today--well, first of all, a lot of really smart people, really wonderful people, started out as attendants, like Lynn Kidder. This is in the olden days--then they became involved with the people that they worked for, and they got sort of absorbed into CIL and the movement from there. There isn't anything to get absorbed into anymore, really.

Landes

What do you mean by that?

Cone

CIL was a whole cultural center at that time.

Landes

You're talking about the mid-seventies.

Cone

Yes. There was this group of people who were real pioneers or leaders and considered ourselves a movement. We hung out and socialized together a lot--we were younger--we were in our twenties. It was just so much looser; you went into CIL, you got your wheelchair repaired, you talked to people, you found out what was happening in the community--like maybe there was going to be a demonstration around attendant care or so-and-so was having a poker party at their house--so the attendants wanted to be a part of it. It was a happening thing. I know that that kind of ambience doesn't exist in CIL anymore.

Landes

And you're saying that it didn't exist in 1989 when you were working there?

Cone

No, it didn't.

Landes

How did you feel about that? How did it feel for you to be working at CIL again fifteen or sixteen years after you first arrived?

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Cone

I looked on it as a paycheck. Most of my jobs--this sounds very cold to say, but my absolute first priority was my son. I cared about the disability rights movement. At this time I was on the DREDF board. I had been recruited to the DREDF board by Mary Lou, I think, in maybe '87.

Landes

You had been on the DREDF board since 1987?

Cone

I think it was '87. So I felt like I was making a contribution to the community in that respect. But I think occasionally I went to a meeting or I did an interview or I talked to somebody from D.C. Or I just did a little teeny thing. But I was not being active at all. So I didn't consider working at CIL the same way I had in the past. I didn't consider it a contribution to the movement; I considered it a paycheck and not a place to have a friendship group or a place that I really wanted to pour a lot of energy into building. I did try to do my best--you know, anybody that I saw with promise, to work with them--but it was not something that I considered anything I really wanted to dedicate myself to.

Landes

So you really perceived CIL differently in 1989. How do you think it was perceived by the broader disabled community in 1989? Had that perception changed significantly?

Cone

From the seventies?

Landes

Yes.

Cone

Totally.

Landes

What's your perception of that change?

Cone

I think people of my generation at least did not see it as performing any really vital functions. Didn't need it anymore.

Landes

Do you think that's true for people who were newly disabled in 1989?

Cone

I think the housing division was important, when it was really helping people find housing; but I don't know how effective it was. But that is an essential thing. I've heard stories of people who came to CIL for help in finding housing and turned around and went back to their home state because they couldn't find a place. So I don't know.

Landes

So CIL wasn't doing such a good job?

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Cone

Well, I don't know. I think they were really trying, but the housing situation is so terrible in terms of accessible housing, at least for people who use wheelchairs, people with mobility impairments. I think that their youth program was a neat thing where they would--

Landes

And the youth program was run by whom?

Cone

It was run by Sandy Feinbaum. I think that they would match up young people with disabilities with mentors, they would work with the kids on different types of job opportunities that might be available to them when they got out. I think they still had some sort of job development department at that point. The one service that I have always felt was just critical that CIL has offered is benefits advocacy, because people get just lost in the maze if they get cut off of SSI or they can't get their SSI, or there's something happening and they're losing their attendant care money. They had a really good guy in there--Gonzalo "Gonzo" Manza. I think Gonzo was running the benefits department when I was there.

So my feeling is that probably the two most important departments were benefits advocacy and the youth component, and I think attendant referral was very helpful to some people but not helpful to others because they had found alternative ways of finding better attendants.

Landes

Are those departments still doing those jobs well, do you think?

Cone

As I understand it, Sandy just moved and Tricia Leetz has taken her place. Tricia seems to me to be a very vibrant, conscientious person, so I think that's good.

Landes

That's the youth program?

Cone

Yes. They've got an absolutely gung-ho advocate in the housing department--I can't remember her name. She seems to really want to go forward with fighting systemically. She's in DRAC--I can't remember what DRAC stands for, but it's a national organization for accessible housing. I think they address issues other than just physical access. I think they address issues of discrimination in other ways. But the attendant referral, as I say, my impression is--I see names on the list when I get it that are people that I recruited when I was there [chuckles].

This is just an impression I have. I don't rely on CIL for any services at all. So I'm not really in a fair position to judge. I do not think it's viewed in the disability community as the organization is still perceived outside the disability

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community--as the great one and only founder of the disability rights movement. People in the disability community certainly don't see it that way anymore.

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Landes

Kitty, do you think that the change that you perceived occurred at CIL is inevitable? That is, a change from a central headquarters for a social and political movement to a social service agency is inevitable?

Cone

I don't know, but I definitely think that's what happened. I don't think they do anything much political at all anymore. There is of course a statewide coalition of independent living centers and a national coalition. They presumably are doing some of the political work, but as a center for organizing people and having a client base that's ready to move on issues, the issues are not there--people in general in the movement are not moving--because we're just in a different phase of our movement. Some people are, but they're doing it through, say, ADAPT or small groups here and there. They're not doing it through CIL.

I'm not in any way involved in NCIL [National Coalition for Independent Living] nor am I very aware of what the different independent living centers are doing. But it's my impression from talking to people that there are a lot of independent living centers that are being run by people who don't have disabilities. If anything would convince me that they've moved into the social services arena and away from the movement model, that's one thing that would do it [chuckles]. In some ways a lot of the movement tasks that we were focused on in those days have been accomplished. There is civil rights legislation, there's public transit here that's accessible, there's a great deal more acceptance of disability as a civil rights issue. There are still big issues to be tackled, but they seem to be being tackled by other organizations, both local and national.

"Big Issues" Facing the Movement: Personal Assistance and Medical Insurance

Landes

What are some of those big issues that you see?

Cone

I think one of the biggest issues is a national personal assistance services program. I think WID is dealing with it, I think ADAPT has really forced the issue publicly. Really, how can

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people live independently across the country if they don't have the attendant care they need?

Landes

So you're talking about the need for a national program.

Cone

Yes. It ties in very much with the Social Security/SSI disincentives issue, that people who do have some attendant care that's tied to Medicaid or tied to a certain poverty income level are frightened of taking jobs where they're just going to earn a little bit more than that level and losing the entire medical benefits and attendant care. So I think there needs to be a real serious discussion of what happens when people go to work who have been on SSI or who have been on SSDI and endanger their benefits.

That is something that has to get dealt with. I think they're beginning to talk about it. How do you get people out of the welfare or disability insurance mode and into the workforce? Or how do you take the disincentives out of the workers' comp system, the Social Security system, the private insurance system, to enable people to go back to work after they've become disabled? I think that's an important issue. I think health care benefits is a big one that hopefully will rise again. There's a lot of discrimination in all insurance programs, but health insurance is a big one.

Landes

Towards people with disabilities?

Cone

Yes, particularly people with mental, psychiatric disabilities.

Landes

Do you experience that discrimination first-hand?

Cone

I did up until a few years ago. I think California now has a law. I haven't had to make use of it. At one point I was without medical insurance a few months ago, and I joined the California Association of Nonprofits as an individual member in order to get covered by an HMO, and then I battled Blue Cross into the ground and was victorious. So I got back on Blue Cross. I got coverage through Blue Cross, which is DREDF's health insurance policy. Prior to that I had been very, very conscious not to engage in Substantial Gainful Activity [SGA] because I have been on Social Security Disability since I was in my late twenties. The limit has always been very, very low, and now it's about $500. You are allowed to deduct from any salary that you earn--any earned income--any work-related medical expenses to reach that limit.

So for instance I can deduct my attendant care for the five days that I work. I can deduct medical equipment that I paid for like my wheelchair that enabled me to work. Things like that.

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I've never been determined to have engaged in SGA, although Social Security challenged me about a year ago, and I spent months making charts. I had to balance my earnings against my work-related medical expenses, which included attendant care and acupuncture and certain types of medical prescriptions and not others, and durable medical equipment.

I came out in the hole, which kind of astounded Social Security because they couldn't figure it out. I am a very determined advocate on my own behalf, and I was completely flummoxed by this situation. If it hadn't been for Marian Blackwell Stratton, who sort of started me on the right track, and then Mary Lou Breslin, who was fighting the same fight and who sat at the computer with me for perhaps six weekends where we just worked nonstop doing these spreadsheets to try to show Social Security--. I ended up with an entire large notebook with about forty categories because I had to do ninety-six months. It was unbelievable. I perceive that to be a really bad problem [chuckles]. I think those are some very important issues that are facing the movement.

Landes

And those battles are being fought by agencies other than independent living centers by and large. Is that correct?

Cone

I think there are people within independent living centers who support these struggles, but I don't know that NCIL is leading any of this. I think it's very possible that NCIL plays a role that is much more political than any of the independent living centers themselves. I doubt that the clients and even the staffs of the independent living centers have a real feel for the political issues that NCIL is involved in, although I'm speaking completely off the top of my head here.

Landes

But also from some experience and having worked relatively recently at CIL. You're speaking about the period where you were working there?

Cone

Yes. And my perception is that there has been a great deal of dissatisfaction within the staff of CIL over the past few years about lack of direction and lack of real commitment to strong service delivery and lack of political involvement. But this is just grumbling I've heard from staff members. I think that there may be changes afoot. I don't know. They're getting some real good new people in.

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Leaving CIL because of Environmental Disability, 1990

Landes

How long did you continue to work there during that period that we're talking about?

Cone

I worked there until May of '90. The reason that I left was that --I can't remember when it was, but CIL got flooded, and I mean really seriously flooded. The water was a couple of feet up inside the building. They had to take out the old carpet and install new carpeting. They did it in two phases. The first phase, they did the back area, which was not where my office was located. I was feeling very poor. This was during the time when I was having the problems with the blood pressure medication, so I thought that that was what my problem was. I had headaches all the time, particularly when I would go into the back rooms, which was where I conducted interviews of potential attendants usually several times a day. Or to attend a staff meeting or to talk with clients. I would really feel low-key and unhealthy. As I said, I attributed it to the blood pressure medication problems.

But then they carpeted the other half of the building. My office was an enclosed office, and I went in the first day and there was an overwhelming odor of new carpet glue. I sort of thought, "Great. This is going to be much nicer." [chuckles] After a couple of hours I had lost my voice and I was having trouble breathing. I had a terrific headache, and I was completely spaced out. I couldn't figure it out.

But after a couple of days in the office I realized that it was the carpet. It was the only thing it could be, and my office was very enclosed. It was so bad that my eyes got crusted over, and the lymph nodes in my armpits swelled up. I told my supervisor that I was having problems and that I was not going to come in there. I wasn't the only person who was having problems, but I didn't realize it at the time. There were several people who were having a reaction to that carpet. I don't think I had ever even paid any attention to the issue of environmental illness or multiple chemical sensitivity--call it whatever you wish--but boy oh boy, I could definitely see what it was doing to me. And then I guess I worked in there maybe a couple of weeks, but then I began to react to all kinds of other stuff.

So they accommodated me and moved me into the independent living skills office, which was down the street, and I did my work under the staircase [chuckles]. Anybody who wanted an attendant or wanted to be interviewed got sent down to this other office to meet with me. I had a phone line down there.

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Landes

Kitty, at that time did you understand that you had an environmental illness?

Cone

I guess in a vague way I did, but I didn't have any idea of the ramifications of it or what it really meant until later when I had clients at DREDF who had environmental illness and when I happened to link up with Susan Malloy from the Environmental Access Network, I guess it's called. She was living in Marin at the time. She was doing real political organizing around the issue of Multiple Chemical Sensitivity. She gave me--this was probably '91 or '92--a great deal of information because I wanted to write an article for the DREDF newsletter about it and about the kinds of clients we were getting and the barriers that people faced and the discrimination that they faced and just the absolute ridicule that they face when they were in work situations where there was something toxic to them or they were forced to work around people who were wearing perfume, which is one of the most difficult things for people to tolerate.

Just the absolute lack of knowledge about it in society as a whole, and then the real dismissal--even within the disability rights and independent living movements--of people with that disability, which I think is becoming much more widespread as everybody's immune systems are getting battered down so much more. But I sure didn't have a clue at that time. I was like, "Oh, no! What's happening to me now?"

Landes

How did you see the reaction within the community of people with disabilities towards this rise in awareness and the rising political movement of people with chemical sensitivity? It was another issue of yet another disability that had not traditionally been part of what was considered to be the disability rights movement.

Cone

I think initially people within the disability movement considered it to be a nuisance. One of the things is that it can affect you emotionally. It can cause you to become very overly emotional. You can seem hysterical anyway, because if you go into someplace and you say, "Oh, I've got to get out of here. This place is going to poison me." People will look at you with sort of a [pause] "Yeah?" type of expression.

Landes

Did people look at you that way?

Cone

Some of my friends thought it was kind of weird and didn't take it very seriously, I think. One of the problems is that the medical profession is so absolutely dead set against acknowledging it. The chemical industry, if you will, is so enormously powerful that

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it is very difficult--when you have no professionals on your side --to tackle the issue. Everybody knows that indoor air quality is a more serious pollution issue than outdoor air quality--that all these sealed buildings, the fact that an awful lot of new furniture is made with pressed wood loaded with formaldehyde that's offgassing into these places that have no fresh air coming in, or where you can't open the windows.

I learned so much as a result of all these materials that Susan Malloy gave me, including this great disaster at the Environmental Protection Agency headquarters in Washington, where they laid down probably miles of carpet, and as the carpet went down the workers were getting sick. Depending on the individuals, they either just got headaches or they got so sick they had to go work in another building or they got so sick they ended up having to stay at home. Ultimately they yanked all of the carpet out. I think had it not been for the professional union which was headed by some toxics specialist guy, they never would have gotten that carpet out of there. But that's my own opinion.

Landes

You mean the government workers' union?

Cone

Yes. There were two. There was like a clerical union, and then there was a professional union. But I read so much stuff about carpets that I realized that it was absolutely indisputable that I had been made sick by this carpet.

Landes

Did you play any role in forcing the issue of chemical sensitivity within the disability rights movement?

Cone

I tried to advance the agenda by encouraging DREDF to take cases and by writing this article. DREDF has a big database, and I wrote a very big article about it for the DREDF newsletter. But then all these people started calling me, and there really is very, very little protection, because it's not included--as far as I can tell it's very hard to get people any kind of protection under any of the civil rights laws--because how do you measure that kind of thing? So much of it depends on the individual's immune system.

I think actually, interestingly enough, there are profiles: there are blue-collar men and women who work around toxics, and there are pink-collar secretaries who are working with all of this stuff--like non-carbon repeating paper; you work around too much of that and--it's banned in Sweden, it's so toxic. Message pads of NCR paper. This is my own theory, but I think it has some basis in scientific fact: people who have had to activate their "fight-or-flight" mechanism too often in their lives have just

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overused their adrenaline. And there's some relationship between adrenaline and wearing out your immune system. They say that people who are overstressed, their immune system goes down.

I was at definite high-risk; I had been around pesticides all my life, I had taken a whole lot of antibiotics, I came from an alcoholic family, I had been an alcoholic myself, and I had been a kid with a disability who had gone into the hospital and had been left in the hospital. All of those things contribute to having a compromised immune system. I think that the barrel was full, and the last drop of water went in at CIL and that's when it started to overflow. I think a lot of people who have physical disabilities are more at risk because they have had to have their adrenaline on alert a lot of the time to avoid being dropped on the floor. Or continual awareness about what's going on in the physical environment around them. I think I'm really rambling on, but this is--

Views on Substance Abuse, HIV-AIDS and Mental Disability as Disabilities

Landes

I wanted to shift slightly and talk about your alcoholism. You've talked previously about having been an alcoholic. At what point did you decide that you wanted to become sober? How did that change?

Cone

In 1979 I got into a support group for partners of alcoholics and drug addicts. We talked about ourselves in this group. It was run by the Pacific Center for Human Growth. It's a gay organization that runs a lot of counseling groups. At one point I was saying, "I got drunk the last three nights, and I'm not feeling too good today." She said, "You what?" I had been a real party girl. I had been the person who threw the best wild parties that went on until five o'clock in the morning, where a hundred women would come and have dinner and then dance until dawn. One of the things about me was that I pretty much could choose when I was going to drink except that I drank every single night or I smoked a lot of dope every single night. One of the things about my partying style was that I could not party unless I was completely loaded. It wasn't impacting my work, and with some exceptions, it wasn't impacting my friendships. I didn't drink around my family.

Landes

Are you sure it didn't impact on your work or your friends?

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Cone

It did on some of my friends. Some of my friends told me later that they didn't enjoy my parties. They were really glad that I cleaned up my act, because I was really clearly to them an alcoholic or a problem drinker.

Landes

So you began to deal with this issue in 1979?

Cone

Yes, and then I got into this alcoholism recovery group, phase one, at the Pacific Center, and I thought I would just do it that way. Then I had a really big bad slip around New Year's, and then I decided I needed to go to A.A. [Alcoholics Anonymous]. I went to A.A. fairly regularly, up until I moved to Mexico. I went to a few meetings in Mexico. They were all men, they were in Spanish, and they were completely welcoming. I was probably the first person in my circle of friends who decided to try to get sober. There were a bunch of us who hung out together, all wonderful creative people, but all of us with serious substance abuse problems. I remember I was kind of irritated when--wasn't Hal Kirschbaum the head of that program over at CIL? I was kind of irritated that they chose somebody who was not a substance abuser, who didn't have a history of substance abuse to run that program. Maybe he just administered it, but that was one of the--

Landes

You're talking about the substance abuse program at CIL?

Cone

At CIL. That's when CIL was in its heyday and had all kinds of programs.

Landes

That was in early 1979.

Cone

You worked there, didn't you?

Landes

Yes.

Cone

I was actually glad that you and Randi Hepner were over there [chuckles], because it seemed to me that a lot of people did not have the experience of substance abuse in their backgrounds. I think they were very competent counselors, but I thought that since CIL was a peer model that that was kind of problematic.

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Landes

Earlier we were talking about the issue of environmental illness, of chemical sensitivity, as being a new disability--or perceived as a new disability. Now we're talking about substance abuse. What's your perception of the way in which the disability rights community saw substance abuse? Was it seen as a disability?

Cone

Yes.

Landes

How early on? Was that an issue that got discussed among your circles or within the movement?

Cone

It was hammered out in the '77 HEW regulations. The disability community nationally stuck pretty strongly together on defending alcohol and substance abusers as people with disabilities. I think there's such stigma attached to it that it's hard. I don't know that other organizations are dealing with it a whole lot. Some organizations are dealing with it, like PRTA--the Pacific Research and Training Alliance. They have done some studies I think that that's one of the things that they do research on and that they're trying to reach out to people with disabilities who are also alcoholics and substance abusers. I don't think the paths crossed. I don't think that there's a lot of focus on civil rights protection, for example, if you go to a conference of people who are dealing with the issue of alcoholism.

Landes

Or a relationship to the disability--

Cone

Or a relationship with the overall disability rights movement. The disability rights movement, I mean, I know that DREDF will become involved in doing advocacy for or talking to the newspapers about issues of civil rights protection and will take it pretty far and doesn't hesitate. But I don't think there's very much overlap in consciousness that the two communities are interrelated. I think that that was true for the AIDS community for a while, except when it got down to legislation.

Landes

I wanted to ask you about HIV and AIDS. In what way did that change? What were some of the struggles within the disability rights movement around the issue of HIV infection and AIDS?

Cone

The issue really came to the fore around the ADA and some of the provisions of the ADA that were being debated. There was one issue I'm not real familiar with because I'm not someone who can speak--

Landes

I'm asking about your perception of this.

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Cone

I think at the time that the ADA was being debated in Congress, and DREDF was really playing a major, major leadership role in working the Hill, that when issues like food handlers who are HIV-positive, can they be employed in the industry? Or are they going to contaminate the food? Issues like this that were very hot-button issues. There was a coalition--there was more of an awareness on the part of the AIDS community that this was a movement--and a community that was a strong ally and could be relied upon. Then I think it sort of fell apart for a while, that there wasn't a whole lot of--

Landes

When is this?

Cone

I think after the passage of the ADA there wasn't a whole lot of interrelationship.

Landes

So there was a coalescence around the issue of the ADA, and then that weakened afterwards?

Cone

Well, different organizations ran projects, like WID ran a project. And I think there were projects here and there. But I think now what's happening--this is what I've heard--is that because of the new drug combination therapies, there are now issues of employment discrimination and housing discrimination and other issues of discrimination that weren't taken so seriously by the broader population. They are being considered more seriously because people are living so much longer and are having to deal with the prejudice and discrimination--not that they weren't dealing with it before.

Landes

But they're dealing with it over a longer period of time.

Cone

Over a longer period of time. And issues of getting back to work after being on disability, and all the issues that the movement and the AIDS community has had to deal with. I think that there will be more of a coming together.

Landes

Do you see that happening now?

Cone

I think it's beginning to happen, yes. As I say, I think it's because of these new drug therapies. But really I'm speaking out of 90 percent ignorance here.

Landes

So over the history of the disability rights movement there have been several instances in which there have been new disabilities that hadn't been included within the movement but then that resistance has been overcome?

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Cone

Yes. And I think we've been talking about some of them.

Landes

So we're talking about substance abuse, environmental illness, HIV, mental disability.

Cone

Really I think the stigma against people with psychiatric disabilities is so profound. There is such fear and ignorance.

Landes

Even within the disability community still?

Cone

Yes. I think if we're all honest we all continue to say, "So-and-so is crazy," or to have a certain amount of fear. I've been watching the coverage about the Unabomber case, and there's part of me that is like, "There's something really wrong here." It's like anybody who has this diagnosis could be doing this. And that's not true.

Landes

So you feel that that case is engendering more fear about people with psychiatric disabilities.

Cone

I don't know, but there are these legal commentators--and now the big hot issue is whether he is competent to decide whether or not he should be tried as mentally competent. Some of the commentators' remarks just make me cringe.

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X Beginning to Work at DREDF, 1990

Working in Lawyer Referral and Technical Assistance

Landes

We've been talking about these broader issues for some time now. I'd like to go back to mid-1990. You've left CIL because of your environmental illness in the spring of 1990. What did you do after you left CIL?

Cone

I went to work immediately for DREDF, working half-time, running DREDF's lawyer referral service which was a California Bar Association certified lawyer referral service. So I would receive calls and do intakes with people. If I thought that they had a legal case, I would refer them to an employment discrimination attorney or a personal injury attorney or a family law attorney. Things that DREDF wasn't dealing with at that time. I also was doing technical assistance with clients who had been discriminated against.

Landes

What was technical assistance at DREDF?

Cone

People who were experiencing problems of discrimination or what they perceived to be discrimination would call DREDF and be referred to me. I would try to determine--this was pre-ADA--whether they had a case under either the state law, the Fair Employment and Housing Act, or Section 501 or 503 or 504, or the Fair Housing Act. Then I would tell them how to file a complaint. I would send the written materials. If I thought that they really had some egregious case I would then say, "I think maybe you have a legal case here." I would take it through the LRS, the Lawyer Referral Service, and refer it out to an attorney.

Sometimes I would refer it to DREDF attorneys. It was the last substantive work I've done, and it was enjoyable, but I'm not good at working with clients because I get too caught up in their stories. And I'm too sympathetic on anything that seems outrageous or discriminatory whether or not it's covered by the

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law. It outrages me so much that I want to have long conversations with them.

Landes

And how long did you do this work at DREDF?

Cone

I did it until 1993. I stopped doing the technical assistance at some point because I wanted to spend more time at home. Also I wanted to put more energy into building the Lawyer Referral Service because it was potentially a moneymaker for DREDF, because we got a percentage of fees from the cases that we referred that got taken and litigated or settled.

Landes

So you were actually recruiting lawyers to take these cases?

Cone

Yes. I was recruiting lawyers, I was running trainings for the lawyers.

Landes

So you were educating the legal profession.

Cone

Yes. We would get DREDF lawyers, we would get EEOC lawyers, and we would get employment discrimination lawyers to talk about class action and changes in the law. And then when the ADA came along we did a big series of trainings around the ADA. So we were recruiting attorneys and training them. I had to read all the list of attorneys who had been disciplined by the Bar. I had to apply for recertification every year. There was a great deal of paperwork involved in it.

I was really disappointed when the decision was made to shut the LRS down, because it was just beginning to generate funds. We had just gotten some big referral fees back for a couple of employment discrimination cases that I had referred out. I was particularly enjoying working with the employment discrimination attorneys. I felt like it was really neat to see a deaf person who had been hired in a situation where she should have been accommodated and who didn't have any TDD or interpreters or anything, or somebody with diabetes who just needed to be able to lie down for a little while and have a snack and who was fired after years of good service because they wouldn't accommodate her in that way, win their cases and either go back to work or get a good settlement.

It was satisfying work, and I learned as a result of running the LRS how important lawyers are in defending people's rights. I understood that you need the laws, but I didn't understand the mechanisms real well, and I began to learn that. One of the other real pleasures in it was working with Brad Seligman, who is one of my favorite people on the earth. Brad was the chair of the LRS Advisory Committee. Brad at the time was still an attorney with

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Seligman and Saperstein, and then it became Seligman and Saperstein et al.

Brad, I think, was one of the top employment discrimination attorneys, class action attorneys, in the country. I had known him since Jorge was just a little boy because his daughter and Jorge had gone to Centro Vida together, and then they went to Berkwood Hedge together. Brad used to drive Jorge to school every day. I used to take Jorge and Corinna [Seligman] iceskating and have them over for dinner once a week. So I had known Brad fairly well, and we were good friends, but I sort of didn't have any concept that he was like this world-class lawyer. He was such a help and so competent.

When I hear people make comments about lawyers as sharks it really irritates me because Brad was forty, I think, when he cashed out of his firm after winning this huge employment discrimination case against Lucky's, which he must have made millions and millions off of. He set up a foundation for funding class-action litigation called the Impact Fund, and he immediately began to give away his money to immigrant rights organizations and DREDF and equal rights advocates. He is to me an example of somebody who made it out there in the real world but kept his morals and his ideals intact. I loved working with Brad.

I continued to work with him after I began doing development work at DREDF. Just at the time that I started doing it--and I'll get into how that happened--something called the DREDF Development Partnership Board was formed, which included people from around the country from different spheres of society--the legal community, both the plaintiffs' bar and the defense bar, and corporations and academia and Hollywood--to do fundraising for DREDF. Basically try to tap into their contacts to get them to help us build our events, introduce us to their communities so that we could go for grants and stuff. Brad became the chair of the Partnership Board. He is just the easiest person to work with. He has no ego involved. He doesn't care if he ever gets an ounce of credit for anything. He's happy to do everything behind the scenes. Everybody on the people's side of the bench loves Brad because he is so incredibly generous both with his time, talent and money. He has a brother with Tourette's Syndrome; that is, I believe, part of why he is so committed to DREDF's work.

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Perception of DREDF's Role in Disability Rights Movement

Landes

What's your perception of the role of DREDF in the wider scheme of disability rights?

Cone

I feel totally at home at DREDF. I don't have any doubt that we would not have the ADA the way we have it today were it not for DREDF, both in terms of mobilizing people in the community and educating them, the work that Liz Savage did, the work that Pat Wright did on the Hill--Pat is just brash and a bulldog and brilliant. She is just strategically brilliant. And then Mary Lou's absolute genius at keeping an organization together. Mary Lou understands the issues to the nth degree. She will deny that she has any kind of original thought in her head, but that's Mary Lou's sort of weird humility.

Mary Lou and Arlene Mayerson are just incredible together in terms of thinking out how to push the envelope. DREDF is the legal defense fund for disability. It's like the NAACP Legal Defense Fund or MALDEF [Mexican-American Legal Defense Fund] or the NOW [National Organization of Women] Legal Defense Fund, and it does all the same things that those organizations do with no recognition from the funding community. It is carrying this huge, huge load. After the ADA was passed, DREDF developed comments for 500 disability organizations nationwide on the proposed regulations. When the 504 cases began to go up to the Supreme Court, DREDF came in and wrote amicus briefs representing members of Congress or representing disability groups. On one case they co-counseled, I think, before the Supreme Court, along with the NAACP Legal Defense Fund, and really helped to shape the Supreme Court's thinking about disability, which was really off the mark in understanding that it was a civil rights issue. Arlene Mayerson gets an incredible amount of credit for that. To me it's just an incredible small number of very dedicated people who are very sharp and who are all stone characters.

Landes

What do you mean by that?

Cone

Look at them. Arlene has like got her head in the clouds, she doesn't even know when you're talking to her, she's deaf, and she doesn't wear a hearing aid. She is absolutely, utterly brilliant. The woman is utterly brilliant about disability rights law. She trains federal judges all over. They throw these difficult questions at her about the definition of disability, and she is so smart. And yet Arlene can barely remember to lock her car. She is just like a scatterbrain. Diane Lipton, who went to law school and became a special ed lawyer because she had fought these tremendous battles on behalf of her daughter Chloe [Lipton], who

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is now litigating these cutting-edge cases around inclusion of kids with disabilities, kids with mental retardation, in the public schools. Pat Wright, who is an utter character.

Landes

In what way?

Cone

As I said, she's just brash. She goes on the Hill in her Birkenstocks and her worn-out pants or her bright yellow high-top tennis shoes, and I think she bullies the senators, myself. But they respect and listen to her. She knows when to back off, and she knows when to negotiate, and she can just irritate people terribly. Yet strategically she knows who needs to be aligned with whom. When she sees that fissures are happening in the movement she sort of figures out how to patch them up. I think I told you that there were times during the 504 sit-in when Pat was just in there being an attendant and all-around gofer when she would just take Judy off and talk to her, and Judy would come back with a clear head. Pat has a incredibly brilliant mind in terms of strategy. But she is a character.

Mary Lou, who is so utterly brilliant and committed, and is to my way of thinking one of the great thinkers about disability policy, and who keeps her candle hidden under the barrel. She will accept no credit, and sometimes I get so mad at her and I say, "Stop that! Stop that! You know that without you the world would be a different place." And she says, "How can you talk such nonsense?" On the one hand, I think that social forces have a momentum of their own, but they throw up leadership at a critical time that reflects the needs of the population.

I think Mary Lou is one of those really exceptional people that a lot of people don't know about. Although she has trained many, many people all over the country, she has written all kinds of articles--she loves to share her knowledge with other people--and it gets passed on and passed on and passed on, and then way back at the root there was Mary Lou. She kept DREDF going on a shoestring, she kept people working for free during the time leading up to the passage of the ADA. At certain times people didn't take salaries because none of the big foundations understood that disability was a civil rights issue, and they still don't. They're totally prejudiced. They're back in the rehab medical model.

Mary Lou is a curmudgeon. She can be a real grouch. She also is a completely compassionate person. Marilyn Golden. Marilyn is like her own little entity unto herself. She comes into DREDF--work, work, work, work, work. Very unsocial, but she has also impacted many people. It's sort of a matriarchy over there. We've now got some new young lawyers in: Linda Kilb, who

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has a hearing disability. She's hearing-impaired. Jan Garrett, who's a quadruple amputee. There are times when I find the DREDF process to be very difficult. I'm just rambling all over here.

Landes

Why do you find the DREDF process difficult?

Cone

You put a batch of brilliant characters together and not that they're prima donnas, but it's very difficult to manage a group like that. Mary Lou was the executive director. It was founded by Bob Funk, who organizationally had tremendous vision of the need for a disability legal defense fund. Mary Lou, who had the organizational ability to carry it out and also had the vision--and Pat, who had the strategic stamina, and Arlene, who had the legal brilliance--.

I should say what it is that DREDF does. DREDF's appellate work, the work impacting the Supreme Court, is very important. And Arlene, in addition to writing amicus briefs that have been very, very influential, also works with lawyers who are considering bringing cases and tries to influence their choice of cases, the way they structure their case, particularly in terms of certain issues. There have been a number of bad decisions about the ADA. Arlene does a lot of work with attorneys around the country. She teaches disability law at Boalt, and runs a legal clinic that used to include six law schools: UC Berkeley Boalt Hall; Santa Clara; Stanford; and other law schools. But the Department of Ed stopped funding legal education, so we just have a much more truncated version of our clinic now. But we train new lawyers in disability law, which is important because there aren't enough lawyers doing it. We do the best legislative policy work specifically on civil rights issues. It's very focused. DREDF does not tackle issues that don't have to do with civil rights. Some organizations, like WID, sort of chase the money.

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DREDF Takes on Controversial Issues and Pushes the Envelope

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Landes

You were talking about DREDF's legislative work, Kitty.

Cone

DREDF is extremely focused in terms of the work it does. It does public policy development, it does appellate work, it does litigation, it does national training and technical assistance, it does research, all on disability civil rights laws. It represents people with all types of disabilities. Right now we just filed a case in San Diego challenging their disability insurance benefits for the City of San Diego employees, because if you become physically disabled you get disability benefits, I think, until

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you're eligible for Social Security and Medicare. If you become mentally disabled, you only get benefits for two years, which is clear discrimination. We take cases of people with all different types of disabilities.

DREDF really takes issues that are controversial. We poured a huge amount of energy into defending disabled immigrants after Congress passed the Welfare Reform Act, which cut all legal immigrants who were not citizens off of SSI, which meant that all these elderly and disabled immigrants lost their SSI unless they became citizens. So DREDF did this huge lawsuit forcing the INS to issue some sort of regulations explaining how people with certain types of disabilities could get by the different components of the citizenship test like the English and the civics and then the oath. And we're still working on that. Dealing with immigrants, that's not the most popular thing to embrace at this time. But DREDF decided that this was just an absolute criminal--

Landes

Was that a unanimous decision within DREDF? Was there consensus immediately?

Cone

Well, there was a big discussion about it. Pat Wright brought the issue to the management team. A lot of the decisions are made at the management level rather than the board level.

Landes

So you're talking about the management within the staff of DREDF.

Cone

Yes.

Landes

And who does that consist of?

Cone

It's basically the lawyers and Pat, who's the director of governmental affairs, the director of administration, myself, and I think Mary Lou floats in and out of it.

Landes

Mary Lou is no longer executive director?

Cone

No. She is directing this research project looking at the effectiveness of the enforcement of four key civil rights laws: the ADA, IDEA [Individuals with Disabilities Education Act], Air Carrier Access Act, and the Fair Housing Amendments Act.

But anyway, Pat Wright brought the issue to the management committee, and people were like, "What are you talking about? We don't deal with immigration issues." And Pat kept saying, "These people are going to lose their benefits if they don't become citizens. And they can't become citizens because they have disabilities." And people said, "We don't deal with benefits."

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Because DREDF does not deal with benefits. That's a whole other area which could just dilute our mission.

Pat said, "But the reason it's a civil rights issue is because the INS is not following 504. They're not modifying their practices, they're not accommodating people with, say, cognitive disabilities." I mean, we had clients who had been in the United States for years who were on Medicaid and SSI who had Alzheimer's. They were going to get cut off. They needed an exclusion or a waiver of these requirements. They needed to become citizens so they wouldn't lose their benefits, if that was the only way they could keep their benefits. So DREDF embraced this issue. It wasn't exactly popular at the time, although it gathered a lot of steam as it--

Landes

It wasn't popular within DREDF?

Cone

No, no, it wasn't popular--I mean, hey, we're in California [chuckles]. [Governor] Pete Wilson. I know that when I was wanting to write fundraising letters I thought this was one of the most compelling issues. We're talking hundreds of thousands of people. Our ex-director of administration was saying, "If you feature immigrants as the first sentence in your fundraising letter you're going to turn people off."

Landes

How did you react to that?

Cone

I thought she was probably right, but I thought that it was important that we make the point. So I wrote it in a way that--

Landes

--made the point.

Cone

Made the point. That these were people who had been working and contributing, many of them, or who were family members and who were going to be essentially stateless if they couldn't become citizens because their families had moved here from wherever and they were an adult child. If they couldn't stay with their family and become a citizen, what were they to do?

Landes

So this is an example of the way in which the disability rights movement constantly intersects broader issues of social justice.

Cone

Really. Here's another one. A lot of the people who are in the juvenile justice system have disabilities. Emotional or learning disabilities that have basically resulted in their failure in school and subsequently getting into trouble. Had they been diagnosed properly, had they been evaluated properly within the school system and given the kind of support services that they deserve, that they are entitled to under the IDEA, they probably

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would have been much more successful. The percentages are extremely high.

Landes

The percentage of people who--

Cone

People who are incarcerated who have disabilities. DREDF is the only organization who says, "Hey, these kids in the California Youth Authority deserve to have special ed services." We did a big suit against the California prison system because there was such blatant abuse and discrimination against prisoners with disabilities. This is pushing the envelope to a certain extent [chuckles].

Landes

Have you had to fight within the disability rights community on these issues or is this pretty much strictly a legal issue that it's within the legal community that you're dealing?

Cone

It isn't even within the legal community. I think it's just cases that other people are not taking. DREDF took this case of this young girl who I believe was in kindergarten at the time--she's now in high school--who has mental retardation. She was going to school in the Sacramento public school system, and they would not let her go out on the playground during lunch because they thought that she was not going to be a good influence on the other kids. This child is so gleeful and has the most wonderful personality and is so well-liked by other children. DREDF took her case and got her fully integrated. The case went all the way up to the Supreme Court. Nobody else would take her case. Her parents were just desperate.

The thing about DREDF that I love is that it goes for legislation and policy that is national and covers everybody. Not that necessarily the laws are going to be enforced without vigilance, and that's another one of DREDF's roles: to try to set the example for enforcement.

Landes

So litigation is just one of three areas in which you find DREDF being very effective.

Cone

Yes. I think in some ways our public policy work is really the most critical. We were doing a huge amount of work around the reauthorization of IDEA, where we were working very closely with the Department of Education and with Judy Heumann over the past several years. Children with disabilities were being scapegoated for discipline problems in the schools. If a kid has trouble sitting still, or tics or makes utterances or whatever, they need appropriate support and aid. But they shouldn't be segregated out of the classroom or they shouldn't be kicked out of school. There were people in the Senate who absolutely wanted any kid who was

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disruptive because they were being "inappropriate," to take away the procedural safeguards that would prevent them from being kicked out of school. That was a very hard-fought issue. It took us up against the teachers' union--I think the AFT [American Federation of Teachers].

Landes

And when were you fighting this battle?

Cone

The IDEA Amendments Act passed this summer and had been going on for two years.

Landes

So DREDF was working on this issue from '95 to '97?

Cone

Yes. And Diane Lipton, who heads up our special ed work, was honored by the White House for her work on it. Sometimes you wonder what the impact is going to be of all of this. Some of the court decisions that are coming out are not so good.

Landes

Can you give an example?

Cone

A lot of the employment discrimination cases are not being--the person is being found not to have a disability because they have some kind of mental disability. I think that's one of the big issues. I would need to go talk to Arlene, but I know that we've been concerned about some of the decisions. The definition of disability has been being narrowed by the courts.

The one thing that I think is absolutely carved in stone literally that we have accomplished is that what we call the "built" environment--the concrete and mortar changes, the elevators, the ramps, the curb cuts--are there to stay. People now accept that you have curb ramps, that buildings should be built accessible. I think that people accept that, and you see it all over. As a result of it, you see people in wheelchairs and people with other types of mobility aids out in society so much more than you ever did before. The more we're out and mixing and on the bus and in the buildings and the restaurants and so on and so forth, the more we're understood to be part of the population and not some sickly pitiful charity cases off in the nursing home.

Feelings Regarding Paternalistic and Patronizing Attitudes

Landes

When you're out and about, do you sense a difference now than say twenty years ago in the way that people perceive you as a disabled person?

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Cone

As I get older I have less tolerance for being infantilized, for being treated as a child. It happens so often to me when I go out.

Landes

Still?

Cone

Oh, every day. People say the most ludicrous--you know, they don't mean it. One day Mary Lou and I were going through the Embarcadero Center, we were late, and we were going kind of fast. This businessman wearing a suit came up behind us and said, "I'm going to tell you just what I told my son, no racing with those skateboards." Mary Lou just looked at him. She's usually the one who makes a sharp remark. I looked at him and said, "You really shouldn't say something like that to us. We're fifty-year-old women." And he said, "I did something bad, didn't I?" And I said, "Yeah, you did," kind of in a nice way. He said, "I apologize."

Landes

It does illustrate the perception that people continue to have.

Cone

All the time. If there's two wheelchairs together, it's worse. You can't go down the street without people saying, "Oh, are you two sisters? Are you twins?" I had this conversation with this African-American man on the bus who was telling me he always says to his neighbor in a wheelchair--this was a really nice man--"I say to her every time I see her, 'Now you get yourself a driver's license.'" I said to him, "Now you're her neighbor, so it's probably fine because you're just joking around with her."

But I hate it when people say that to me. I drive my chair fast because I can't drive a car. So if I want to get to the BART station I can't go in a car, so I go fast in my chair and that's how I get there. I hate it when people say to me, "Don't speed" or, "Do you have a driver's license?" or, "Are you going to run over me?" or things like that. Not even when I'm going fast; even when I'm just lolling along, strolling. I feel it's like somebody comes to me based on my physical appearance alone and feels they have the right to invade my personal space and say some ludicrous comment to me about me having a driver's license. To me it's almost like going up to somebody who's black and saying, "Gee, you're lucky you're black. You're probably not going to get sunburned today." People come up to me and say, "Gee, I wish I had one of those things. I'm really tired of walking around today." And it's like, who do they think they are that they can come up to me and make a comment? It's just pervasive.

Landes

Do you feel that there's more of that now? Do people feel more comfortable saying something like that, as ignorant as it may be?

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Cone

I think so, because I think they're trying to be friendly and out there. But they don't understand that it's perceiving the person with a disability as a child-like being. And if you perceive someone as a child-like being, they can't take care of themselves. To me there are so many analogies with race, particularly with how African-Americans were seen as this child-like group of people who needed some kind of paternalistic system to take care of them. And then there is this whole paternalistic system historically in place that's dealt with people with disabilities from the telethons to the rehabilitation systems that didn't really deal with independent living but just dealt with the physical side of things.

Landes

With the medical model.

Cone

With the medical model, that I think reinforced the whole system.

Foundations Fail to Support Disability Rights as a Civil Rights Issue

Landes

Does that make you pessimistic or optimistic? How do you weigh those?

Cone

I'm optimistic. Mary Lou says I'm an eternal optimist because I always think that DREDF is going to get funded by the Ford Foundation, and we never do. But I understand that it took women years to get funded by Ford, and that it took the NAACP Legal Defense Fund going to bat for MALDEF to get them funded. But the legal defense funds for race and gender get millions and millions of dollars from Ford, and we can't get one nickel from them. They just don't get it. The Congress gets it, on some level most people in the United States get it because they know that there are laws, and the big foundations that deal with funding civil rights are still thinking that it's an issue of funding a special center for blind children or something like that.

Landes

You're saying that the foundations don't get the fact that it's a civil rights issue.

Cone

Yes. We're in a critical stage where you've got this constellation of very new civil rights laws that need to be enforced, that need to be monitored, that are not going to be implemented well without serious vigilance on the part of the disability rights community and particularly the legal defense fund, and they won't give us money.

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Landes

We were talking about some of your frustrations with the Ford Foundation and other funding agencies. Would you speak more about your experience with the Ford Foundation?

Cone

Sure. Evidently, long before I began doing development work at DREDF, there had been many attempts to go to Ford--that's what we call it: "go to Ford"--for funding because they were the logical place to be receiving large grants from, to be funding the kind of work that we were doing.

Landes

What was it about the Ford Foundation that made them the logical place to go?

Cone

They have a social justice category that funds all the legal defense funds very well. They're making some changes right now, but historically they've given millions of dollars to the NAACP Legal Defense and Educational Fund--otherwise known as the Inc. Fund; MALDEF, Mexican-American Legal Defense and Educational Fund; the NOW Legal Defense Fund; Puerto Rican Legal Defense Fund. And they've given them money for specific projects. But also they give them large grants just for operating purposes, to do civil rights, anti-discrimination activities. Millions of dollars. And so for that reason it was logical.

There are other foundations, like Rockefeller Foundation, that also we've had the same experience with. American Express Foundation, when it existed. But anyway, Ford is the biggie. Ford is huge, enormous. In the early days--well, there's a famous story. Mary Lou went to New York along with--I believe she met up with Itzhak Perlman--and they went together to meet with Franklin Thomas, who was the director at that time. I can't remember if they met with him or they met with Susan Berresford, who was his assistant and is now the director of the Foundation. But I think they actually met with Susan Berresford. Itzhak was trying to--Itzhak's child went to this school with Berresford's child or something. I don't remember all the details, but there was familiarity there.

And Itzhak, in this meeting, talked about his own, personal frustrations with concert halls that were inaccessible and how it taxed him so to have to get up into places where there were stairs, when he had to travel around to do concerts. You know, the problems of lack of access. But also Mary Lou and whoever else was there were presenting why--this was before the passage of the ADA--why it was so critical to fund DREDF to carry out and further the civil rights agenda. At that time, of course, what we had was Section 504 covering federally funded programs. In order

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to get coverage extended to the public accommodations area and private businesses, which would have made the disability coverage equal to race and gender, there needed to be new legislation, which ended up happening with the ADA.

But in any case, the story is that after all of this discussion and laying out the issues and so on, they basically said, "Well, this is all very interesting, but we don't do disability. We don't want to open up for everybody and his brother kind of thing." And the only money Mary Lou got was while she was sitting in Grand Central Station having a cup of coffee, someone came along and dropped a quarter in her cup [chuckling].

Landes

And spoiled her coffee.

Cone

Oh, God! To me, that just captures the spirit of the problem, that people with disabilities are perceived as charity cases, as pathetic.

Landes

Even when we're talking about civil rights for disabilities.

Cone

Well, you know, they sure don't get it. I believe that Tony Coelho [former Congressman] went to Ford for us; I believe Ted Kennedy may have done something; and the most recent effort that we made with the Ford Foundation was a couple of years ago, after Franklin Thomas stepped down and Susan Berresford was in the process of becoming the new director. She was doing this whole review of what programs Ford funded and sort of figuring out what direction she thought the Foundation should go and assessing priorities and so on.

[A brief passage has been withheld from on-line publication.

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Landes

So you wrote the letter to Berresford.

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Cone

Well, it was more like a little manifesto of several pages. She didn't want anything long, but I called it "Tasks and Perspectives of the Disability Rights Movement" or something like that, and I basically said here's where the movement is at today, after having absorbed every bit of information I could from Mary Lou's head. What I essentially said to you earlier--we have this constellation of civil rights laws. We're sort of where the civil rights movement was after voting rights, the Fair Housing Act, and the Civil Rights Act.

The new civil rights laws had been passed--the Voting Rights Act--but if they were going to be enforced, you needed to have a strong legal defense fund that could take the cases forward, that could be monitoring, that could choose the right cases to take to the Supreme Court. All of that stuff, that there were tremendous similarities there. And how there had been advances for children in terms of services and integration but that we were a long way from where we needed to be.

We sent her that. We also sent her a copy of No Pity by Joseph Shapiro, which talked about the role DREDF had played in getting the ADA passed. Then she came out and met with all of our substantive people. She met our whole staff. She could see that we were in the ramshackle office with very small staff. She met with Arlene [Mayerson], who was our directing attorney, who is absolutely brilliant and can just knock your socks off when she is on; Pat [Wright], director of governmental affairs; Mary Lou Breslin, who was the chair of the board; and I think a couple of other people. Oh, and Ed Cooke, who is an African-American attorney who is on our development board; and Barbara Bode, who is now a consultant on philanthropy but who at the time was the head of the Council of Better Business Bureaus Foundation.

Everybody came away from the meeting saying that if Susan Berresford didn't fund us, it would be amazing. Except for Mary Lou, who came away and said, "I'll believe it when I see it." So then Susan Berresford asked us to continue to communicate with her, so periodically I would write a letter and sign Mary Lou's name and say "enclosed is a copy of our latest docket" or "here's our latest newsletter, and we hope you are proceeding well in making your determination about what organizations and issues you'll be funding."

And then, about a year later, we got a letter that was signed by the director of the social justice division, saying, "We are sorry. We are unable to fund your request at this time. Your priorities are just not within our boundaries." It was signed by him and cc'ed to Susan Berresford. She didn't even have the courtesy to write us herself and say, "I've decided not to fund

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disability." This, to me, was utterly outrageous. I thought, "Hey, the woman may have gone to Smith, but she is rude." She should have written Mary Lou a letter directly and said, "I'm very sorry. I was very impressed by your presentations, but this is the direction the Foundation is going." Instead, it was like your stock letter, signed by somebody else, with a cc to her, and we never heard directly from her. And this is after we're having all these communications with her executive secretary and all this kind of stuff. I was astonished. I really was astonished that it was handled in such a rude way.

Landes

Other than being astonished, how did it make you feel?

Cone

Oh, I had fantasies about things I would like to do to these people [snickering]. I would like them to try to go all day long without going to the bathroom for a few weeks and see how it does them. Well, you know, I want to write a really fierce letter, but I don't do that. Mary Lou says, "Go ahead and do it. What have we got to lose?" But I say, "No, no, Mary Lou. We have to hope that someday they'll see the light."

But it's not just disability civil rights issues that they don't fund. I've heard that Ed Roberts, who could snow anybody, went to Ford to try to get funding for international disability independent living work, and they said essentially, "We don't do disability." They just didn't want to open up a whole new area. I think--I really do believe that they see it as rehabilitation and--

Landes

Charity?

Cone

--charity. You know, I just had this experience this week, where the National Association for Public Interest Law has awarded a number of what they call partner fellowships, based on their choosing your project for funding. But you have to get matching funds from no more than two corporations or law firms. And so I started with the local ones because our project is a local fair housing enforcement project, where we're going to be doing a lot of intake with people with disabilities of all types of disabilities--psychiatric, developmental, physical, people who are on benefits, people who are on Section VIII--

[tape interruption]

Cone

The project will do intakes with people who have experienced housing discrimination and then provide them with assistance and advocacy. It will have a testing component similar to the way testing is done in race cases.

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Landes

Explain what you mean by "testing."

Cone

Well, it's where a person without a disability goes to rent an apartment and is told, Yes, it's still available, and a person with a disability--say, uses a guide dog or is on benefits--goes to rent an apartment and is told it's not available, and then another person without a disability goes to rent the apartment and is told it's still available. So people from the target group--if it's African-Americans or interracial couples or people with disabilities--are trained in how to do the applications. And then, based on patterns of discrimination, lawsuits can be filed.

And DREDF will file lawsuits in cases where--and we're working with Protection and Advocacy [Inc.] and with Independent Living Centers. It's a big project. The hope is that everybody from apartment owners to cities and other governmental agencies which approve building permits and builders and communities that have the final say in whether or not, say, a halfway house for people with disabilities is constructed in a neighborhood when the neighbors get all riled up about it--that all different types of issues will be able to be addressed that will actually make both governmental agencies and landlords and builders aware that they cannot ignore the Fair Housing Act as it applies to people with disabilities, with impunity.

So anyway, this is clearly an issue of civil rights and discrimination. Our fellow would be a young attorney coming out of law school. So I've been trying to get the matching funds from different corporations and law firms. So I call up Levi Strauss, and I have faxed over a little synopsis of the project and how their money is going to be maximized because it's going to be matched by some other corporation and how it's going to be matched with funds from the Open Society Institute and that the fellow will receive further training through NAPIL [National Association for Public Interest Law] and that it's going to train a young attorney in disability civil rights law, and it's going to bring tremendous benefit to people with disabilities in the Bay Area.

The person from Levi Strauss is very nice and says, "Well, you know, I think this sounds like a great program, but it doesn't fit into any of our categories." And I said, "Well, what are your categories?" He said, "Well, let's see. We have arts and culture and blah-blah-blah and blah-blah-blah and social justice." So I said, "What does social justice consist of?" I mean, I know the guy is not going to even consider it, but, you know, sometimes you just can't control yourself. He says, "Well, social justice goes toward civil rights issues, minority communities, discrimination, that kind of thing."

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So I said, "Well, I know that you don't write these guidelines all by yourself. This is not directed at you personally, but there's a real crisis for people with disabilities, in housing, because, first of all, it's a very poor population. The housing market around here is very tight, and there are laws. The Fair Housing Act covers people with disabilities, and nobody is abiding by it. Now, this is to me a civil rights discrimination issue. And I can tell you as someone who has personally looked sometimes for months to find a place to live. It is really a big problem."

And he says, "Oh, I'm sure it is. I'm sure it is. It seems like a really good project. But, you know, it just doesn't--." I said, "I know, I know."

Landes

How do you feel--I mean, in your job. Not only are you attempting to raise money, but you're being forced to attempt to educate people on the other end. How do you feel about that?

Cone

I don't think you can educate them by having these conversations.

Landes

Do you not feel that you're at all effective in potentially changing some of these guidelines down the road?

Cone

Well, it isn't just me. I mean, other organizations have tried to do it, too. At one point, Pat Wright went to the National Council of Foundations meeting and gave a talk, and a couple of foundations actually picked up on it. Small ones. The Norman Foundation and one other, I think. But for the most part it just went right over their heads. I think that the Dole Foundation and the people involved in the Dole Foundation have attempted to educate funders about the issue somewhat, although the Dole Foundation--because it focused exclusively on employment and not really very much on even laws affecting employment but on actual employment projects--tended to get a lot of money from different foundations who then felt like they had already given their disability quota, and so that made it even more difficult to get funding for other organizations.

But, yes, it's very frustrating. At some point, I am sure they have to recognize it. Congress has recognized it's a civil rights issue; states have recognized it; it's part of the legal fabric of the country. But, again, you know, these are foundations that do fund what I have to call segregated programs. Not that they're bad. You know, like special recreation programs for the disabled or the Orientation Center for the Blind. I mean, they have historically funded these kinds of agencies, and so they just see it as a services thing.

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The thing that really makes me mad is if you call up some of these foundations that do really, really big projects on education or education research, and they literally say the words, "We don't do disability." And so you say, Well, there is a whole large component of education that is publicly funded in the United States that is for people with disabilities, and that's part of the education system, but is very difficult for parents and the students themselves to work their way through this system and to get what they're entitled to, which is a free and appropriate education in the least restrictive environment. And we're trying to help parents work their way through this maze, and you fund parent education programs; why won't you fund this? "We don't do disability." It's just like a mantra or something, and it's really frustrating.

Landes

Who is working on the strategy to change the attitudes of these foundations?

Cone

Well, I think early on, people at the Dole Foundation tried to get some sort of consortium of funders together where disability organizations would come and present, and the foundations would be educated. But I don't think that it was very successful, but I'm not really sure.

Here's an example. I mean, these are just anecdotes, but the--gee, I have such a bad memory. There's this organization called Independent Sector. It is made up of both funders and fundees. I believe that development people from universities, from all different types of organizations sit on its board. And disability as well. And also from the foundation world. And they try to analyze trends, like what's going to be the effect of legislation, what are the trends in philanthropy, etc., etc. They have a big conference every year.

A couple of years ago, they had--Justin Dart received their man of the year award or something like that. And so I felt very strongly that DREDF should be represented because they were going to have a panel on the ADA. Marilyn Golden and Pat Wright went from DREDF. And you're not allowed to do any sort of networking or try to influence funders at this conference; it's just for exchange of information. So Pat and Marilyn, I believe, sat on the ADA panel, which was not well attended. How strange [chuckling]. And then Justin gave his speech.

Later, the Independent Sector was having a meeting out here, to which I went with our director of administration, Sue Stevenson. I said, "I can't go to these things by myself. Everyone is standing up, and they're going to have, like, a buffet

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and stuff, and I just need help going because I can tell you how I'm going to be treated."

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Cone

And so the woman who I think was the new director of Independent Sector, who was a Latina, gave a very excellent talk. Afterwards I went up to her and said that I was so glad that they had honored Justin Dart because I felt that it was some expression--and hopefully the funders were taking note of it--of disability rights as a civil rights issue, because Justin had been campaigning very, very heavily for the ADA and spoke about the ADA, and when Justin speaks, he is a militant rights advocate. Anyway, I didn't say that, but I said I thought that was very good that they had honored him because it showed that they were conscious of blah-blah-blah, and I hoped it had had an impact on the people who were attending.

She said, "Oh, yes," she said, "we were all so moved by him. We were all crying at the end. We all stood up and cried, to hear such powerful words coming out of such a little, frail body." Well, you could have knocked me over with a feather. I was so outraged! I mean, what the hell kind of comment is that?

[A brief passage has been withheld from on-line publication.

Landes

Sue Stevenson got an education.

Cone

She couldn't believe it.

Landes

Again, how do you--do you see a strategy? Are you and others consciously working on a strategy to attempt to overcome this?

Cone

Well, I think we're just hammering away, in our conversations and our written materials. I mean, I've written things to both Ford and Rockefeller saying, unfortunately, funding for the work that DREDF has to carry out has never been commensurate with the tasks we have to perform. But periodically, some of them will say,

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Well, why don't we have a disability panel at the Northern California Grant Makers Association, or why don't we--but it never seems to materialize.

Probably, it would be a good idea to get everybody together, all the different disability organizations together and send some sort of letter to the National Council of Foundations, saying we want to make a presentation about disability and why it's not an issue of charity and rehabilitation only, why it's a civil rights issue, why it's an independent living issue, why a legislative agenda needs to be advanced on these fronts, because I don't think anybody is really getting what they need.

Look at WID. I think WID has had to contort itself doing different projects--I've talked about this before--in order to get funding, when they do have a couple of issues that they have as their main focus.

Landes

When you say "contort themselves," do you mean that they wind up shaping a program to fit an RFP [request for proposal]?

Cone

Exactly. I think right now technology is very hot, so if you have some project that has to do with technology, you're more likely to get it funded, and everybody knows that technology is great for people with disabilities. I mean, all these people with carpal tunnel syndrome and they're developing new technology to deal with that. I think that there's probably more chance of getting funded if you're sort of out on that edge.

But if you're just trying to help people get out of their apartment or find an apartment and get a decent education and have an equal shot at a job through some kind of effort that will have a large impact for many people, you're not sexy to the funders. They don't get it.

Landes

To what extent do you feel hope on this issue?

Cone

Well, I've been told that the only way that MALDEF got funding from Ford was that the Inc. Fund went to bat for them. I hope that someday--you know, it took a long time for MALDEF to get funded, and I heard that it took a long time for women's issues to get funded by Ford, in particular. So I hope that our continued work within the civil rights community--DREDF is absolutely recognized, within the broad civil rights movement, as a representative, a leader of a legitimate civil rights population-- so I hope that somehow or other the funders come to realize that it has been decades now. It's time.

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Because this is the big problem for DREDF. DREDF should be five times its present size. DREDF needs more lawyers; DREDF needs more people in Washington; it needs to be able to take more cases. Everybody that works at DREDF is completely strapped. And to really pay attention to all the lawsuits that are coming up around the country, and which ones should go forward and which ones should be encouraged to deviate [chuckling] from where they're going takes much more than poor Arlene Mayerson trying to do it herself.

Landes

This is where we came in to this issue, that Mary Lou said you were the eternal optimist.

Cone

Yes.

Becoming DREDF's Development Director, 1993

Landes

I'd like to back up. We started talking about funding because of your comment about the Ford Foundation. I want to back up. How did you become the development director at DREDF, and when?

[A brief passage has been withheld from on-line publication.

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Cone

Well...Mary Lou had left I believe in 1989 as the executive director, and she became the chair--I believe she became the chair--no, Al Kalmanoff was still the chair of the board. There was a national search for a new director, and it boiled down to Paul Miller, who went off to serve on the EEOC, I think, or a position in the Department of Labor, anyway. He was with the Western Center on Law and Disability, whatever its title is.

This guy, Jim Gleich, who was running a Massachusetts department of disability, which was a fairly big bureaucracy, and I think we should have realized that someone who's running a bureaucracy is probably not the right person. But this guy came to be the executive director--

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Landes

Jim Gleich?

Cone

Yes, of DREDF. We were excited because he was a man and he had a disability! I think he might have been post-polio, but he walked with a cane and he had--it was not a significant mobility impairment, but he did have a disability. God, that was the worst period.

Landes

And this is still the late eighties, or is this later, the early nineties?

Cone

This is, like, around 1990, I think.

Landes

So you are now working there in technical--

Cone

I was working there in LRS [Lawyer Referral Service]. Jim just stayed in his office and didn't do much of anything, and he fired the development director. We had had really successful fundraising events, one with Ted Kennedy and Evan Kemp and another one with Matilde Krim and Tony Coelho and [U.S. Senator] Tom Harkin. They had been very elegant events, evening dinners. It's good to have a track record and a tradition of having an event every year, but that year there was no event. The ADA passed--and I don't remember if Jim was in his position at that time--but I remember that we didn't even have a news conference in Berkeley. Michael Winter called a news conference, as if CIL got credit for it or something.

But Jim Gleich fired the development director, and I was a little irritated because I had always--I had forgotten about this. But I was going through my personnel papers recently because I needed to look at them because of something to do with Social Security, and I had written a letter to Jim saying that as a reasonable accommodation I had always had a person who supported me as my secretary because at that time I didn't have a computer, a voice-activated computer, and that that person helped me get my lunch and do my correspondence, etc., etc., and that I needed to know that person was going to be there when I was there. Because he was setting up some kind of secretarial pool.

Well, he fired people and hired people, and there was like no rhyme or reason. It was just really bad. And there was so much bad feeling. There was demoralization. At that point I guess Shelley Bergum had become the chair of the board. Shelley called the board together, and they made the decision to fire Jim, but they also made the decision to have Linda Kilb, who was this very junior attorney, take over as the executive director.

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I really was very impressed with Linda, and I think she's very conscientious and very smart. But they didn't consult with any of the senior staff--they didn't consult with Pat or Mary Lou; they didn't consult with Diane or Arlene. And the next thing you know, Linda is the executive director. Well, the shit hit the fan. I mean, the attorneys stopped coming to work. I mean, they were just outraged that this huge change had been made. I mean, Linda had been mentored by Arlene, and no one--evidently, Shelley hadn't talked to anybody. Shelley had talked to me, and I said, Oh, yes, I thought Linda was fine. But I had not really worked with her. I thought that she was quite competent and very conscientious and so on and so forth, but--

So people were very upset. There was just kind of a bloodbath with the board, where Shelley and Kalmanoff and Mike Torpey--who was at Orrick, Herrington, Sutcliffe, which is a major, big, downtown law firm in San Francisco, who I really like --were asked to leave the board. And so Torpey, I think, just stopped doing disability volunteer or legal work. Kal and Shelley--Kal is Kalmanoff's nickname--went over and got on the board of DRA at some point. There was bad blood around that.

I was off the board by this time, thank God!

Landes

And so DREDF had a series of crises. How is it that you became the development director?

Cone

Well, the development director was fired under Jim Gleich. There was no fundraising going on whatsoever. So then Linda ended up being the--oh, God, she was the--managing director. That was the title they decided to give her so that she wasn't seen as the executive director, because I think people felt like she was not executive director material in terms of being able to handle both administration and speak with the voice of the years of knowledge and experience that you get for being in a movement. She just wasn't at that level. So a management team was set up to sort of oversee this new position, managing director.

DREDF went into sort of a financial nosedive because we had gotten a number of really large federal contracts to do ADA work that were running out. One was to do a very ambitious training program. I mean, these were millions of dollars of contracts. To run a hotline, to produce different ADA materials. And these contracts were ending. Jim had just been funding everything, I think, through this, and hadn't really done any grant writing or tried to raise money through individual donations or any of the array of things they used to do to raise money.

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So Mary Lou came to me and said, "We are going to lay off a number of staff, and we are going to discontinue some projects, and we're going to discontinue the Lawyer Referral Service." I was disappointed because the Lawyer Referral Service was at that point beginning to bring back money into the organization. It had taken me a while to get it up and running because you refer out a case; it takes a little while for it to be settled; and, you know, it's a couple of years before you see any money. It was just beginning to come back.

But she said that DREDF couldn't sustain it and that she would like me and somebody else--Maud; I can't remember her name, but she went off to Harvard Divinity School, anyway--to do grant-writing. Well, I don't think Maud got into it, but I just took to it and enjoyed it thoroughly.

Landes

When did you go into the development part?

Cone

I think maybe May of '93? Sounds right. Prior to my going to work on development, there had been some pretty serious discussions about developing a whole institutional development strategy or series of tasks for DREDF.

Landes

So it sounds like--because there had been no fundraising going on, no development work--that you essentially really had to develop that job and develop the work at DREDF.

Developing DREDF's Development Partnership Board

Cone

Well, I did, but I did it in collaboration with Mary Lou, who was working for free. And then Mary Lou and I started splitting my salary. I would just pay her [chuckling] mortgage payment.

It started out that I was going to be just the grant writer, and so I was writing grants. I actually was quite good at it because I'm a fairly fast learner. One of the things about me is that I sort of absorb other people's ideas and words and can just move them around. I wouldn't say that I'm particularly original in terms of developing concepts of work, and I don't think that that's the job of a grant writer anyway. But I got to be pretty good at taking existing stuff and writing up materials about DREDF.

At this time, a development board was being established. It was a separate corporation, but it was a board, the DREDF Development Partnership Board. It's a national board.

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Landes

Could you explain the purpose of this board?

Cone

It doesn't have any policy-making authority whatsoever, so it has no ability to direct the substantive work of DREDF. In fact, it can't really even direct its own work, if you look at the fine print. Its purpose is to raise money for DREDF and to enhance DREDF's profile and to establish contacts for DREDF in those arenas where money can be raised or DREDF can become better known. So the initial members of the board were from academia, Hollywood, both sides of the legal fence--both the defense bar and the plaintiffs bar--the foundation world. Who else?

Landes

Who were some of the early people on this board?

Cone

Well, Brad Seligman--I think I've talked about Brad before.

Landes

Yes.

Cone

Jeannette Harvey from University of San Francisco. Craig Safan and his wife, Linda, who are the parents of a child with Down's syndrome. Craig is a musician. He wrote the music for "Stand and Deliver" and for Ellen's movie. He is well known and well liked in Hollywood. And he got Danny DeVito to send us $2,000. Linda organized an event in 1994 called Circle of Friends.

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Cone

This event was at the Maple Drive Restaurant, which is the kind of place where post-Oscar parties are held by Elton John; it's that kind of place. They put together entertainment, and Linda made a film about her son and his circle of friends who were helping him in school. A few of us from DREDF went down there. There weren't too many famous actors there. Gene Barry was there. But the very top producers of "Top Gun" and the Bill Cosby Show were. There were important Hollywood people there. We made some contacts who did come through with money and have become regular contributors. But--.

Here's another example of where we had a problem. You know, I don't want to malign poor Barbra Streisand, who I think really is a very philanthropic person, but Craig knew a number of members of the board of the Barbra Streisand Foundation. We knew the executive director of the Streisand Foundation, and she had previously funded us. Barbra Streisand's Foundation funds nothing but civil rights. Right now, they're particularly focusing on trying to establish understanding between the African-American community and the Jewish community. But her stuff is all civil rights.

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And so Craig really worked to get them to give us funding. Again, it just--they didn't get it, or she didn't get it. You know, it's a five-person board. The director liked us, two members of the board were Craig's personal friends, and we couldn't get money out of them. It's usually who you know. I think it was because it was Streisand's personal bent.

After that I saw her give this speech at the Kennedy School of Government at Harvard, which was Barbra Streisand on Everything. She gave what I thought was really an excellent political speech. At the end of it, people were asking her questions. And she managed to answer all of them very, very well until somebody asked her about the Americans With Disabilities Act, and she was really, really weak on it. She did not get it.

But in any case, this is me complaining again. The Safans did a lot of really good work for DREDF.

I quickly went from being the grant writer to being the development assistant. I was working with Mary Lou. It entailed hurriedly putting together a luncheon, a downtown luncheon, which would then become the format for our events for the next two years, with [U.S. Attorney General] Janet Reno, who was fairly recently made the attorney general. She was still considered very much a hero because she had taken responsibility for Waco. We got a lot of lawyers to come, and it was a very, very successful event.

One of the things that was really interesting was that at this same luncheon we gave an award for advocacy to this group of young people from Bakersfield that called themselves Friends Together Forever. They had formed the group to try to enable this disabled girl who had been in their classes through elementary school to move on to junior high and high school with them because she was going to be moved into a segregated school across town. This group of kids--they were all Latino--and they did such a fantastic organizing job. They did car washes to raise money, they made a video, they sold t-shirts.

And the way that Louise [Fuller] ended up going back into an integrated situation was they raised money to go to a conference on special ed, and they met Diane Lipton there from DREDF. And Diane took the case and won it. And this group of kids was so great. After they won it, they rented a limousine and went over to the other school and picked up Louise and brought her back to the school, and they had a huge party.

Louise and her mother and her friends got up on stage, and the entire audience was crying. These men in business suits were

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crying. I mean, I'm almost crying. And Mary Lou says to me, "Did we do something right or something wrong that we had all these men in business suits crying at our luncheon?" These were kids who could have been doing something else, and they were really building a campaign that meant something to them. That was a total high. It was really fun to work on that. It is all-consuming work, though, working on an event.

Landes

Do you remember what year that was?

Cone

Yes, it was '93. By this time, I was doing grant writing, and I was working with the Development Partnership Board members to encourage them to sell their own tables, because they had contacts. Like, one of them had contacts with the National Football League; another one had contacts with the Bells, the telephone companies; another one could get foundations to kick in money. I was working with--we were having regular monthly meetings over the telephone.

The agenda would usually be the events and what people were doing for that, and foundations and corporations and who did they know. I would send out a list of things that I was investigating and did they know anybody on the board of any of these foundations. Sometimes it paid off, and sometimes it didn't. But it was a lot of work. I mean, the care and feeding of the Development Partnership Board is almost a half-time job in itself because they're all important people in their own worlds, and they need to be responded to immediately with the absolutely finest-quality materials that can be produced. You can't just put them on your list of fifty things that you have to do.

You know, my sort of worker bee tenaciousness was very good in this job because, for instance, I brought up that we were having this event in my book club, and one of my friends said, "Oh, ask my girlfriend--she's the vice president at Novell--if they'll buy a table." So Novell bought a table. And another one said, "Oh, why don't you ask the university if they'll buy a table? Direct it to this." And somebody else said, "Oh, I'll do volunteer work." And so I would just talk about it all the time. I also am dogged in terms of following up on these things. So we did very well on table sales.

Anyway, it was a very good job for me. It sort of tapped into my organizational strengths and allowed me to write, which I love to do. And then I got to become a client of the Department of Rehabilitation, and I got a voice-activated computer, which was just like liberation. I had never been able to use a computer before. I was much freer than I had been because up until then I had a secretary--I would dictate and the secretary would do a

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draft; then I would hand-write all my changes and they would make the changes. It was a very laborious process.

Landes

Can you give an example of some of the things that you now did with the voice-activated computer? Specific ways in which you felt that it changed your life, your working life?

Cone

Oh, yes. Well, it's just so much easier to do your own cutting and pasting and see what it looks like right there in front of you on the computer than it is to handwrite it out and see how it looks after somebody types it up, and then go back and redo it, and shift the paragraphs around. I was so much faster at grant-writing, at writing articles for the newsletter, at writing personal letters to people, soliciting money. I mean, all of the--.

I had a huge number of big tasks, looking back on it, which I think any development director does. But I was responsible for putting out the newsletter and the lawyers would never really take responsibility for writing their own articles, so it usually involved interviewing them and writing their articles. I was responsible for organizing the agenda and getting everybody to at least two or three--at first it was three and then it was two--Development Partnership Board meetings a year.

I was responsible ultimately for the success of our events. Although we always hired an event planner, you have to sell your own tables. They can take care of printing the invitations and that sort of thing, but you have to do a huge amount of work. It's very all-consuming.

I was responsible for developing and running our major gifts campaign. It was starting from scratch. Basically, we had a very, very old, horrendous database. I would go through this database and develop forms and then get the different Partnership Board members and staff members and board members who would agree to write letters, and I'd have to draft all the letters for them. And there were different letters, depending on what the circumstances were. And do research on the potential donor and then encourage the solicitor to be sure and do their work, and then follow up and write thank-you letters from DREDF and thank-you letters from the solicitor. It's a huge amount of work.

Also, any direct mail. If we'd win a case, I'd send out a letter saying, We just won this case, and enclose an envelope. Then I also was trying to court people for the Partnership board. So it was--I actually managed to sustain that level of work for about three years. And then--

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Landes

From 1993 to 1996?

Cone

Well, let's see. I guess it was in the fall of '96 when I said I just can't do this anymore. After we had our event. And so I convinced the management team that we should hire another development director. Unfortunately, we put out this job announcement and we hired the absolutely wrong person and wasted a whole lot of money, and then we didn't have enough money to hire someone. And so I ended up--

I just wanted to go back to grant-writing, which--number one, I just didn't have the stamina to carry out all these tasks anymore. And they were beginning to unravel. Like, the newsletter wasn't coming out regularly. I felt like the Partnership Board members--there wasn't any recruitment going on. They had all been on the Board for a long time, and they needed to be replaced or nourished or whatever.

There was some weird internal stuff that was going on, too. But I decided I just wanted to be the grant-writer. I did not want the pressure. It's really a high-pressure job, particularly when you're building an event. It's just too much. So we hired this person who didn't do anything. She was sucking down a huge salary for several months, and finally my boss said to me, "What do you think of how she's doing?" And I said, "Well, what is she doing?" We both looked at each other and said, "Yeah, we both think the same thing. This isn't working."

So she was asked to leave. Then I tried to say I'm not going to do it anymore. We then got a new director of administration. We had made the decision to have Tipper Gore, to ask Tipper Gore to be our keynote speaker, and we were honoring some different organizations and individuals. At Pat Wright's suggestion, we hired this events planner from Washington, D.C.--over my objections. I wanted to hire Jill Davies, the person we hired to do the 504 event. This was before the 504 anniversary in 1997. We had interviewed her, and I thought she was great, which was why [chuckling] I recommended her for the 504 thing.

The person who was supposed to be building the Tipper Gore dinner just didn't do anything. I mean, she did less than anything. She didn't even have any kind of a program for filling in who was buying tables and how much they had paid and who had been contacted. She would just take off for days at a time. So she says, "Well, send out a mail merge to your database." Well, by this time our database is like 15,000 people. A mail merge? I mean, you've got to be able to check a mail merge. You just can't send it to some mail house. It was like, What?

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And then it was going to be a leaflet, so it ended up with my boss and I doing all the work on this event.

Landes

For the Tipper Gore event?

Cone

Yes. I mean, designing the--

Landes

So what is your status--what's your job now at DREDF?

Cone

What happened is I'm still the development director, but I am very, very much trying to only do grant-writing, and I decided at the beginning of this school year to work half-time, because Jorge was really struggling in school, and I just was very concerned about him. And I also--you know, he's a very popular kid, and he has lots of friends who come over after school, and I didn't want a lot of kids hanging out in the house without any supervision, particularly girls and boys together [smiling].

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XI Reflections on Family Life and Pondering the Future

Devoting More Time and Energy to Family

Landes

So you were devoting much more time to your family life.

Cone

Yes.

Landes

And this had an impact on your work, the time and energy that you could devote to your work.

Cone

Yes. And actually, I would say then my work was having an impact on my family life. There was a period of time when before Jorge really hit adolescence--I mean, he hit adolescence, but before he turned sixteen, when it sort of was okay for me to be working full time. But I realized that he was really struggling on a number of levels and that I needed to be--number one, I needed to be here in the afternoons to be--you know, just to see what was going on in the house and where he was going, and to make sure he was getting his homework done, which he wasn't.

But also I needed to not be--one of the things that was happening was that the work was sapping so much of my energy that I was very tired and irritable. And I wanted to be more upbeat and not just in a state of collapse [chuckling] by the time I saw him at the end of the day. And so I talked to our director and said, "My family comes first."

The other thing that was happening was that my aunt--who I believe I said had been raising me since I was a teenager; well, had been for all intents and purposes my mother--was dying. She had been dying for--well, she had been diagnosed with lymphoma several years before, and she had outlived her prognosis by a year. But it was clear that she was going to die at some point fairly soon.

Landes

So this is in 1997 that we're speaking of?

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Cone

Yes.

Landes

Both the intensifying of issues with Jorge and then your aunt's dying.

Cone

Yes. She had asked me, I guess about a year before, if I would take her place on this--I don't know if I've talked about these family committees. But our family on my mother's side has a number of committees that manage the family property. The way this property sort of evolved is that my great-grandfather had purchased a number of farms around the Champaign-Urbana area. I guess he had worked his way up from stock boy, and then he became the head of the bank, and he bought all these farms, and then my grandfather managed them and was also the head of a bank.

The farms were located right outside of Champaign, and Champaign grew right over them, so that they went from being farmland to being real estate land. The family traded them for real estate in other areas, like a little shopping center in Austin, Texas, and a shopping center in St. Louis and an office building here and a Steak and Shake there, and this sort of thing. There are three families that are involved in this, of my grandfather's generation, and then their children and then the grandchildren. And I'm on the grandchildren level. So there is a fairly hefty amount of property, but it's split up many, many, many times.

But the decisions about what to do with this property are made by some committees. So my aunt asked me if I would take her place on these committees. Now, my aunt was just this wonderful force. She felt like the most important thing was family. Sometimes there were disagreements in these committees, and her prevailing philosophy was to try to find a middle ground so that there was not any acrimony. You know, if people wanted to get something out, that it was possible for them to do that without harming the interests of the other people.

Landes

So you had these three major things going on last year that were certainly affecting the time that you could put into work: your aunt's impending death and then Jorge and then your aunt's request that you sit on this family committee?

Cone

Yes. Actually, last year I made, I think it was five visits to see my aunt. Well, the last was after she died, to go back to her memorial service. This committee meets three times a year. It meets in St. Louis, which is where one of the big properties is, in Champaign, Illinois, and in Naples, Florida. And I have to spend a lot of time studying these documents. You know, I'm not a business person. I'm absolutely in favor of it going forward in

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the best possible manner because it pays for my attendant care [chuckling], you know? I want it to be successful. But it takes time for me to study different options. You know, you get these packets of information: we can do a ground lease, we can sell, we can trade, we can go into a REIT [real estate investment trust] (which I never heard of). So that also was taking my time.

And the other thing that I felt was particularly important with my aunt dying was that--and this has been true ever since I became a mother--is that, to me, family has become much, much more important. Both my brother and my three cousins, who are really like my sisters, and I make a point of trying to visit them, and they come to visit me, and I don't like to be working when that is happening.

I have always had to juggle it around, and I just made the decision this year that those family ties are very important to me and need to be nurtured because I really, really love my cousins and my brother, and I depend on them, and they help me, and they depend on me, and I help them. For example, this coming spring I have--in February I have to go to this meeting in Naples, Florida. In March my cousin--she calls herself my sister, Georgia--is coming to visit me and bringing her daughter, and they're coming to visit for about ten days. And then in April, my other cousin, Annie, is coming to visit me. She just decided to do that. And then in May I have to go get Jorge out of his program that he has gone to. He's in a wilderness academic program, and I have to go to North Carolina and get him, and I'll spend some time with my cousin Georgia then.

And then, I'm sure, in the summer our family always goes away to the Outer Banks of North Carolina for a week in the summer, and I'm sure we'll do that, or something else. It's particularly important now that my aunt is gone. She was always the linchpin of our vacations, that we maintain our vacations.

Relationship with Jorge

Landes

Let's talk a little bit about your relationship with Jorge. You've gone through recent transition with him.

Cone

Boy, have I!

Landes

Would you speak to that? And how you feel about that?

Cone

Sure.

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Landes

You've had primary responsibility for him.

Cone

Oh, absolutely. I mean, you know, I have been his parent. I'm a single parent for all practical purposes--in terms of where he goes to school and parent-teachers and testing and social life and, well, everything--I mean, I've been a single parent from the get-go. I think that what Jorge is going through--Jorge was diagnosed with learning disabilities late, unfortunately. They really did not classify him for special ed until he was in seventh grade.

And I think that by that time, he had solidified some survival strategies that were very self-defeating and that are very common for kids with learning disabilities, such as just not trying and saying, "I don't have to do this work because I'm never going to use it" or, "I know this material. I have read the book. Therefore, I don't have to do the journal" or, "I don't have to take the test because I don't have to prove to anybody. It's only me that's going to benefit from it, and I know it." This kind of thing.

So he was in resource at Albany High School and was just really having a terrible time in English and in science. There was a lot of written note-taking work, which is very, very difficult for him. So this year, when he was a sophomore, I enrolled him in Arrowsmith Academy, which is this really neat little school in downtown Berkeley that is very, very small compared to Albany High, which is not that big but has got hundreds of students. And Jorge hated the social life at Arrowsmith, although academically he was being successful with the exception of English and World Civilization, which also required a lot of writing and reading.

They didn't have any learning specialists there, although I think that they really did try to accommodate each child's learning style much more than even the resource room at Albany High. So he was doing very well in math, in algebra, and biology and art, and he was great at P.E.; but he was flunking these two classes. And then he just started cutting them. Then he started cutting school altogether.

Landes

Were you aware of this quickly?

Cone

Yes. And so I would ground him, and he didn't care. And then, shortly before my aunt died, I started investigating boarding schools because I really felt like I could not find a place around here that was equipped to deal with the fact that he had sort of hardened into his position or his behaviors. I was very concerned that he was--

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Landes

What impact did it have on you emotionally and physically, if any?

Cone

Well, emotionally it was just a real roller coaster because he was sort of lying--I mean, he wasn't sort of lying. He'd get up and get dressed as if he were going to go to school, and then I'd get a call from the school that he hadn't gone. I'd get home at the end of the day, and he would have been here all day. I'd ask my attendants, and they said, "Yes, he didn't go." So he'd act like he was going to go.

You know, one thing about having a kid who is different from you--and I think this is particularly true with adoptive parents--is that you need to learn that they can be very different from you. They may not be real motivated academically; they may not be--I mean, certainly Jorge is not interested in books--and I love books. He's much smarter in--he's got great spatial intelligence; he's got good mathematics skills. Just the areas that I'm weak in, we're really different.

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Cone

So at this point I decided I was really going to have to research some boarding schools. I got an educational consultant, and we started looking at different boarding schools. And then my aunt died. So we went back East. It was around Thanksgiving time. This really made me appreciate my family. All the grandchildren came together, and it was a very good mourning process because we celebrated her life; people could cry and be supportive, and it was a good memorial service. We had a little private family circle, where we could tell stories about her and whatever.

One of the things Jorge did was to write this absolutely loving poem about her that he just went downstairs at my cousin Ann's house and got on the computer and composed this beautiful poem about her that his cousin read at the memorial service.

Landes

Why did his cousin read it?

Cone

Well, because Jorge was crying so hard. I mean, this was his grandmother.

Landes

So she had been a very important person in his life as well.

Cone

Oh, totally. I had asked her when Jorge was born if she would be his grandmother, and she said yes; but only if my uncle could be his grandfather; and so they were totally wonderful to him. I can't help getting a little emotional here. She treated him absolutely equally. When she gave money for every grandkid's tuition for college, she gave him money. She paid his tuition for

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school. She always remembered his birthday and Christmas. I mean, she just absolutely included him--in vacations--and I think that--you know, there was something about him that was very special to her. She thought he was very, very sensitive.

Sometimes I'd say, "Oh, my God, he's driving me nuts." And [chuckling] she'd say, "Well, there was a year that Georgia didn't speak to me for a whole year." And she would always say, "And he is such a good boy." She really, really was completely fond of him and always invited him and thought of him. And always said, "I have six grandchildren." Publicly. She ended up in the newspapers periodically because of who she was, and there was Jorge, listed among the grandchildren.

So it was a big blow for Jorge. I felt ever since she died that he seemed very depressed.

Landes

She died in the fall of 1997?

Cone

Yes. Jorge went back to see this boarding school for kids with learning disabilities that his cousin Cora [Finger], Georgia's daughter, goes to. Immediately after the funeral. He left from Washington, D.C. He went back with Cora. He went to visit the school. He spent two days in the school. He told the headmaster that he liked the school and he would like to go there, and he came back here and immediately started cutting at Arrowsmith again. At that point, by the time you added up all the days he had missed, he was going to flunk, get F's in everything for the first semester. So I withdrew him from school, and I said, "You have to go to Brehm." That's the boarding school that Cora goes to.

At which point, he ran away from home for two days. Well, this was probably one of the worst experiences I have ever gone through except that I knew where he was because his friends were taking him in and telling their parents that he was just going to spend the night. So I was trying to track him down. We had started family therapy earlier because of just some troubling behavior, with the cutting and stuff.

So he came back at the end of the second day to have family therapy. And the family therapist and I thought she was going to have to pick him up on the doorstep and take him out for hamburgers or something, but he came back, and we sat around and had a reasonable discussion. There was part of me that was so relieved he was back, but there was part of me that wanted to shake him and say, "You little shit! You don't know how worried I've been about you." It made me completely distraught.

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So he came back, and at that point I made the decision to send him for the semester in the Southwest, where he's going to go camping and do all this great stuff, from snorkeling to white-water rafting to mountain biking, and also study. He's been gone for about nine days, and I miss him, but I feel like this program is going to be so good for him. They say that kids who have been experiencing exactly what Jorge has been going through make tremendous gains in self-esteem and self-reliance as well as learning academic and outdoor skills. It's a program for kids with learning disabilities who have got these negative survival skills, just as a way of, like, keeping their little shreds of self-esteem together in the face of failure.

Landes

What's the name of the program?

Cone

It's called SOAR, Success Oriented Achievement Realized. They're going to go to Mexico, and they're going to go probably to New Mexico. So I spent a lot of time off work. Fortunately, my new boss has got two boys of her own, and she's completely understanding and is just a really wonderful person. But there's part of me that feels like--one of the things I realized over the past period, working half-time or working not at all and working on these things for Jorge--because I had to deal with everything, from getting him tetanus shots to getting him an I.D. card to filling out all these applications and getting him all his gear at REI--is that I feel so much better when I'm not working full time. The stress level was really affecting me.

I'm working full time now to try to catch up for all the time I missed while I was getting him ready, but I'm glad that I'm officially at half time. I think I'm capable of working full time, but it sure does suck the juice out of me and leaves me so depleted that I feel like I'm not a very effective parent, and I don't have any energy for friends and fun and just don't enjoy life very much. Well, that's not true. I do enjoy life, even when I'm working full time. But I become a big whiner, and I don't like that. So I definitely intend to keep going half time, and at some point I really want to retire.

Musing about the Future: Fears, Plans and Dreams

Landes

How do you see yourself in another ten to fifteen years? When you say you want to retire, how do you see your life as a senior citizen, as a retired person?

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Cone

I've had this dream, which is shared with a number of other people, to live in some type of co-housing arrangement with friends. The people who I think are really the most interested in it are Joni Breves and Nancy Bailey. Jeannette Harvey and her husband have talked about it. Nancy Bailey has got some friends, very close friends, who are interested. Mary Lou periodically talks about it. And then there's a few other friends who are not as serious about it.

One of my problems is that I love my house. I love where I live [chuckling]. But I don't know if I'll ever be involved in another relationship again. I don't seem to be of interest [chuckling] to anybody, so that's part of it, but I want--more than anything, I want after Jorge has grown up and gone out on his own, I want companionship. I want people that I can have dinner with and watch movies with, play cards with, that kind of thing.

I want people that I can look after and who will look after me in the event that any sort of issues arise. When my father got into his late sixties and early seventies, before he died, he had a terrible problem reacting to drugs, prescription drugs, and I think that--I already know that I'm really wired sensitively in terms of reaction to, like, the blood pressure medications and stuff. And I want people around me who know that if I get acting bizarre and firing my attendants or in a situation where my attendants are abusing me or something, are going to intervene. And I want to be able to do that for my friends, as well. I want us to look out for each other so if one person doesn't have enough money to make it, that there are others there who are paying attention to them and making sure they're okay and that they're getting enough to eat and that sort of thing.

I know that frequently in co-housing arrangements you start out with friends and you end up with strangers.

Landes

What do you mean?

Cone

Well, that you go into the arrangement--if you really go through with it--with a group of friends, and some of them fall away, and then you end up doing it with more strangers than you thought you would. And maybe that's what will happen, and maybe I'll change my mind and decide I want to stay in this house.

Landes

Do you have fears about growing older?

Cone

My big fear is that I will lose my marbles and not be able to manage my attendant care. That's my only fear because of this episode I had with the blood pressure medication, where I was just bats. You know, I got into a fight with one of my ex-attendants,

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who was a completely lovely person, and told her if she didn't get her stuff out of my house [chuckling], I was going to call the police.

I don't want to be isolated in any way because one of the things that I did when I got in that state was to isolate myself. Fortunately, my friend Charlotte intervened and pulled me back. She kept tabs on me and got other friends to do so. I don't want Jorge to be saddled with this kind of thing.

There's part of me that feels like I know myself well enough at this point, but, you know, if you're given a medication for something and it's affecting your brain, it doesn't matter how well you know yourself if your brains are, like, getting scrambled [chuckling].

So that's my big fear, not being able to manage my attendant care. You know, that I would drive off an attendant or I wouldn't be able to pull together the hiring process. And I would want my friends to help me do that. I've be collecting a lot of durable medical equipment [chuckling]--lifts and sliding boards and all kinds of stuff [chuckling]--to prepare for the future. Which is one of the reasons why I think I don't want to leave this house, because I've got such a good setup in terms of my sling lift and that sort of thing.

I think you can have a great time as an older person--and I learned a lot about it from watching my aunt, who even though she was in the final stages of her lymphoma was going off on these vacations and having a wonderful time. She was surrounded by people, family and friends, and she'd get out of the hospital and get them to give her some extra transfusions, and off she would go on a boat trip down the Danube.

I expect to enjoy myself in my older years. Here's the huge thing that I want to do that I'm afraid that my memory is too bad for me to be able to even take a stab at it, but I would really like to write a novel about the sixties. This is my great desire in life, and it has been for a long time.

Landes

Have you started any work on that?

Cone

No. I have a concept of what I want to do, which is to have, like, five people and how their lives are intertwined, sort of in the movement. It will be about the movement.

Landes

The movement in the sixties? Civil rights, anti-war?

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Cone

Yes, and women's liberation. Sixties, early seventies. And then maybe bring it up a few decades, where people are today. I don't know. I need to take some classes. I've never taken a creative writing class. But I have this idea, that there be one person of each type. There'll be a disabled woman; there'll be an Italian guy whose family is sort of typically Italian; there'll be this black printer. These are all people I know.

Landes

So you actually have done some thinking about this.

Cone

I've thought about it, but, you know, it's going to involve incredible research. If I had done it ten years ago, it would have been so much easier because I could then--before I lost my mind--I could remember dates and stuff. And it'll be in Chicago. I mean, a lot of it will be autobiographical, or at least it will be based on things that I saw. I'll probably scramble around my own stuff and spread it out among the five characters or something. If I do it.

There's part of me that thinks, Who knows what will happen with this family business? If it actually generates a little more money, then I would actually be able to leave my job and work on it. I mean, take the classes and really start writing. And I don't know if I have any talent for it or not. But I want to try [chuckling].

Landes

It's a nice plan and a nice dream.

Cone

Well, I don't like the things that have been written about the sixties. I don't like people's treatises because everybody has a perspective, and I have a perspective, too. But there have been very few novels about the sixties that I thought fairly treated the idealism that people had and the sacrifices that they made. Fairly often, the sixties is portrayed in movies and in books with the people as caricatures. You know, they all have giant hair and flower bell bottoms. Maybe that was true. But they were the clothes that people wore.

The people that I knew were very, very talented people who were serious and idealistic and really cared about making society a better place and who could have gone into jobs in corporate America and made a big bundle of money, but they lived on a pittance in order to do what they felt was the right thing. And I don't think you ever get that perspective, really, in the media.

Landes

What role will disability play in this story?

Cone

Well, you know, one of the characters is going to have a disability, who is going to become involved in the disability

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movement. And that will be based on my experience. Whether it will be a man or a woman or what, I don't know. One of them will be a lesbian. One of them will get involved with something to do with Mexico--you know, I'm going to take the stuff I know and weave it in.

But it's the historical stuff that I really, really want to get across. Like how hard it was to be against the war in the early days and to be just spat upon and stuff. And now, here you have [Robert] McNamara and all these people coming forth and saying, "Oh, we didn't like the war, and LBJ didn't like the war, and JFK didn't like the war." Right. They didn't like the war. So why did they keep doing it? Don't try to act like you were the ones with the morality, puh-lease.

Landes

So do you feel, looking back, you made a lot of sacrifices?

Cone

Oh, I loved what I did with my life. I feel that I was so privileged to have lived at the time I lived because our generation really had some important social issues that we could sink our teeth into and make a contribution to in whatever small measure we did. I wish I could have had a decent relationship with somebody somewhere along the line that lasted for any period of time. But other than that, I have no regrets.

I think--who knows? Had I not gotten involved in the--well, you know, had I not had a disability, I would probably have gone to one of the Seven Sisters. I would never have gone to the University of Illinois. I might not have gotten involved in politics because the real spearhead on our campus was Rudy Frank, who had a disability. Rudy went after me with a vengeance both because he wanted me involved in politics and he wanted me as his girlfriend.

Once I got involved in the civil rights movement, I was off and running, and I just went from that issue to looking at the issue of the war because the civil rights leaders, from Stokely Carmichael to Martin Luther King, were all looking at the war and coming out against it. Then I looked at the system as a whole, and I loved my years in the Socialist movement; I feel like it trained me in ways that I never would have been trained had I not been involved there. I was transferred by the SWP to Berkeley. If that wasn't lucky--and by sheer luck I ended up right in the heart of the independent living movement and was able to transfer my skills, so I feel like--

I don't know what I would have done. I probably would have gotten a degree in English and maybe been a teacher and maybe gotten married. But I think I've had a great life.

Transcriber: Shannon Page

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More on Relationship with Jorge

Landes

Kitty, we've talked about what having a son has meant to you and what your family has meant to you. Talk more about--more broadly --just what it's meant to have a child, as a disabled person.

Cone

Well, I've talked about the fact that when I started the adoption process, that I realized that there was a significant barrier to my adopting because of my disability. And I've talked about how readily I got sterilized. I think things have changed for disabled people. I think that someone going to an adoption agency today might have an easier time of it. Certainly I know of people with disabilities who have done independent adoptions where it's gone smoothly. It's on TV now, families with disabilities raising children.

But I think there's still a significant amount of prejudice. A number of years back, I guess it's maybe nine years ago, a woman named Tiffany Callo, who had cerebral palsy, had her child taken away. The issue was that she couldn't do all the care, and she needed her attendants to help her. The state came in and absolutely said, "Your attendants cannot put any of their hours into helping you take care of your baby," and they took the baby away.

Landes

What state?

Cone

Here in California. And so for people who are poor, and most disabled people are poor, parenting is still a right that I don't feel is totally secure. I think somebody who is blind or deaf, who is going through, say, the Child Protective Service system because somebody reports them or thinks they're not going to be able to do it right, I think they probably face a much harder time in resolving their situation than somebody who is not disabled. Even if they are providing the same quality of love and the same quality of--you know, the same amount of food on the table and getting their kid to school. I think that they probably are immediately suspect. And I think that that's [laughs] why you have these movies on TV about "the successful parents," because it's kind of catchy. But I'm not sure that that's the attitude that exists out there in the general public.

So anyway, about myself, I had sort of resigned myself to not being a mother until I was around other people--well, there were a number of factors that went into my decision to go forward, and one of them was the sit-in and being around other people who

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had significant disabilities and who had kids and were raising them fine. Another one was raising Claudia [Noriega] for four years, Alma's [Noriega] daughter, and realizing that I could do fine with her, and that in fact, in some ways, she became very mature around disability stuff as a result of being around me. She's just got it. And if Alma and I hadn't broken up, and Alma hadn't taken Claudia back to Mexico, I think that probably it would have impacted how I related to the movement.

But in any case, after I adopted Jorge, of course, there was a total hiatus in my political life because I was in Mexico for two and a half years, and the only thing I did was to correspond with Judy a couple of times. Then when I came back, I was very conscious of working part time while we made this transition. I worked part time up until Jorge was about eleven, I guess, and then I started working full time. But that was a wonderful period in my life. Well, I mean, ever since he's been my son, it's been wonderful. For one thing, it's brought me a lot closer to my family, because I and they want to connect up so our kids can know each other and can know the broader family, and it just--it's made me a less judgmental person. I used to think, looking at people with their kids who had problems, Boy, why are they doing that? Why are they letting their kid get away with that?

Landes

So having a child humbles you.

Cone

It does. You know, you realize that you can't pull the strings and expect things to turn out exactly as you wish. You're not God, you can't create this child in your own image. I don't think anybody knows exactly what they're getting into when they become a parent until they're in the middle of it.

So it's presented me with personal struggles that have forced me to look at myself in a way that the movement allowed me not to look at myself. That's been good for me. It's also presented me with total joy and pleasure and new experiences. I mean, I don't know--I used to play poker before I adopted Jorge, but to have an evening where you got together for dinner and then played Monopoly after dinner, I don't think I'd done that since my drinking days when I used to try to beat people at Risk.

So I just learned--well, you can't work full time and be a workaholic for the movement when you've got a child, and do a very good job. I believe that. And so going on trips into nature, and going to the zoo, and going to the circus, and all of these things that you do with a child, it just opened up whole new things for me which I hadn't done since I was a child myself. I mean, most people I think go to Point Reyes and all these different places that you would take a child, and I never did any of that. I moved

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to California and worked nonstop and never did very much fun stuff.

Landes

So it sounds like having a child put your political work in perspective, and while you continued your political work, your life was much more complex, and it sounds like there was a lot more joy as well.

Cone

Oh, definitely, definitely. And I changed somewhat the people that I hung out with. I hung out with Jorge's friends' mothers. Fortunately, Jorge had the good sense to pick out interesting friends who had interesting parents. Something in your question touched off something I wanted to say, and I've lost it.

I don't know who said it, maybe it was Lenin, maybe it was somebody else, but there's a saying that revolutions are made by the young. I've always admired people who could keep up their political activity at the same time that they had a family. Looking at it now, I realize that they may have been providing--say in the Socialist movement, or in the women's movement--that they provide leadership, theoretically they attend meetings, they do their particular projects that they're working on, but they don't work full time for the movement--I mean, we're talking nine in the morning until midnight--when they have families.

And I think that that's partly what happened to me. I don't know if I could have kept up that pace anyway, so--and the movement changed also. It didn't really require that.

Landes

In what way did the movement change?

Cone

Well, in the movement--

Landes

And you're speaking of the independent living movement?

Cone

Well, the disability independent living movement, yes. If you look at the movement in the seventies and you look at the movement at the end of the nineties, there are not meetings happening all the time. There are not demonstrations happening all the time. There's a lot of action going on on the Internet. There are people who are just demonstrators, and who--there are demonstrations going on. ADAPT is doing a lot of demonstrating. I think--but there isn't the high level of activism that existed in the seventies. So even if I had the energy for it, I would probably be doing something else.

I suppose I could, if I were so inclined, find something to do in the movement that really required me to devote a lot more time to it. I'm continually asked to go on international trips,

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to go to Cuba, to go to China, to go to Europe, to go to Africa, and I always say no, because I have--well, first of all, I think it doesn't fit with my job. I like doing a good job on my job. But I also don't want to take off and leave Jorge. And I also feel like I don't have the level of experience. I mean, I have been doing fundraising for the past five years and before that I was doing lawyer referral and technical assistance on disability civil rights laws. So I don't feel like I would necessarily be a good person. I'm such a perfectionist; I wouldn't want to go off and do something like that. Although I'm sure I could pull it together and pull it off if I had to.

So it's made me much more of a homebody. I don't want to eat out in restaurants all the time. I want to eat dinner in my own house. I want to have people--you know, I celebrate holidays that I never celebrated before, and I enjoy it. I think having a child, you want to create warmth around the child. And you create warmth around yourself as well. So in nurturing Jorge, I've been nurturing myself.

Landes

What has it meant for you that Jorge is away at school now, in the spring of 1998?

Cone

Actually, I've been doing a lot of work, trying to figure out what's going to be the right setting for him when he comes back, and I have actually been resting and spending a lot of time with family members. I think they think I'm having empty nest syndrome, and they're coming out to visit me, which Jorge is disgusted about that, because he says, "Why don't they come when I'm there?" His feelings are hurt. But one of the things it's meant is I talked to him yesterday, and I had to tell him that his cat of sixteen years, that he slept with all the time and carried around on his shoulder, that he loved dearly, that I had to put her to sleep. The main--well, the director of the program flew out to spend a week with the boys and said he was going to tell Jorge because he had had to put a dog to sleep and he's an animal lover. I had written Jorge a letter explaining all the circumstances and why it was the kindest thing to do, and I was really worried about him. I thought, He's going to think if he goes away, the cat's going to die, and I think he worries that I"m going to die.

When my aunt died, my little niece Molly--she's not little, she's seventeen--she asked Georgia, "Well, is Kitty going to die? What kind of condition is Kitty in? Is she doing okay?" And Georgia talked to her about it, "Well, she is getting weaker, and so on." So I think that that's an issue for Jorge.

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But the main thing it's meant for me is that he is changing. He's started to read. He never read for pleasure before. I've been sending him books that he's been requesting in his care packages. He has become someone who loves hiking and loves rock climbing, and talks about how beautiful the desert is. He is just so much more confident. He is--this was just the best thing. I think I really did well on this, I am so happy.

You know, it's made me think a lot about how hard it is for parents of kids who have learning disabilities or who are falling off the track for whatever reason--I mean, I think there's many issues for Jorge. You deal with adoption, I'm sure, on some subconscious level even if you don't talk about it when you become a teenager, because you're thinking about your identity. He's got all these oddball issues. His mom's a lesbian and has a disability and it's an interracial family and all of that stuff. And I was thinking what a great kid he is. I mean, the people in the program say, "You have got a gem of a boy. He is so kind, he is so thoughtful, he works so hard," and they say all these great things about him. "He's so smart." "He's been cooking quesadillas for the other boys and they really like his cooking," and it just makes me feel good.

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XII Reflections on the Disability Rights Movement

Disability Rights and the Movement for Social Justice

Cone

But I was thinking about how incredibly privileged I am that my aunt gave me money for his college account and I can afford to do this, and how horribly hard it is for other parents who don't have resources. I think that that's true about any kind of disability, learning disability--you know, what the schools do for kids with learning disabilities, I'm pretty fed up, I have to say. I don't think so many of them would end up in the Youth Authority if it weren't for the fact that the schools just don't do right by them. They don't test them early enough, they don't give them what they need. I'm just very lucky.

And I think that that is how I feel about disability in general, that if you have resources, you can work your way around it. But so many people don't have resources, so many people are poor, and if they don't start out poor, they end up poor, if they are spending their money on what they need. You know, all the inequalities of the society really impact people with disabilities--I mean, all the unfairness, profoundly.

Landes

Talk about how you see the relationship of the disability rights movement to broader movements for social justice.

Cone

Well--

Landes

How do you assess that now, that relationship?

Cone

You know, recently I was reflecting on where are we as a group, where are we as a people, an oppressed group in this society? And I think that one of the things I haven't really talked about or haven't reflected upon very profoundly is that I still believe--I still am a Socialist, and I still believe in "From each according to his abilities, to each according to his or her needs." And I think we're nowhere near that.

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Landes

As a whole society?

Cone

As a whole society. And that disabled people as an oppressed minority are--you know, we pose the question probably more clearly than any other group, because if you look at the African-American community, it's racism and the ravages of racism that make the unemployment and the bad schools and the poor housing and--I mean, it is the economic system ultimately that's responsible for it. But I don't know that people would say, "Well, how on earth is so-and-so going to work when they're blind and in a wheelchair? What do they really have to offer? What do they really deserve, other than a pittance or some minor amount of welfare?"

Well, I believe that what a person who's blind and in a wheelchair deserves is everything they need to live a quality life, and this society is capable of doing that. There's probably more blaming when people think about the unemployment rate in the African-American community, or why people are having to raise their children in horrible housing projects that are not safe for a variety of reasons. There's probably more blame; they're responsible for that, somehow or other.

I think there is not blame in terms of disability, but there certainly is no sense of everybody's entitled for their child--I'm really sort of rambling, but I feel that everybody is entitled for their child to go to a good school, everybody is entitled to have a family, everybody is entitled to good, comfortable housing, and security, and the knowledge that they're going to be able to have a good nutritious meal. And everybody is entitled to a job, at whatever level they're able to perform. They are entitled to creative outlets.

Sometimes I think about the movement and I get very caught up in what is happening today, what are the actual issues today, and I haven't really thought about it in the context of socialism, that we're really not going to get there until we have changed the institutions in this society. I don't think we as a group, I don't think racial minorities as a group, I don't think women as a group are really going to attain equality and have access to--well, I don't even think working people as a whole are going to lead the kinds of lives that it's possible for us to lead in this country until you have a different social and economic organization of society.

Because what is happening now is sure, the stock market--there are more people in the stock market than ever before, but the rich truly are getting richer and the poor truly are getting poorer, and the differences are becoming much more profound.

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Landes

And you see disabled people as being negatively impacted by all of this? As a class?

Cone

Absolutely. I sometimes say that disabled people are a class. I don't think they're a class in terms of an economic class; they're a class sort of in the legal term. Because I think people with disabilities come from all classes, although they certainly end up in the working class or just even--I wouldn't even say lumpenproletariat; they end up just in a situation where many times they're not able to work, and they're on benefits, and they end up down at the bottom rung of the ladder. We end up.

So I think the issues of a broader social movement are really highlighted by the disability rights movement, because the disability rights movement says that every human being has value and has worth and is entitled to live a life that is not one of dependence--and I think the leaders would say this for sure--of dependence and poverty and lack of--just inability to engage in the activities of life that everybody else engages in. And we pose that question really clearly.

Landes

Do you think that the movement for rights of people with disabilities has pushed forward these other struggles?

Cone

I do. Well, you know, in the national coalitions, like the National Civil Rights Coalition, disability is perceived on an equal footing as other minority groups. And leaders who are really tuned in to the national civil rights issues and agenda and what's going on in Congress, and leaders like Jesse Jackson, they always mention disability. But very often, on the other hand, disability is left out. I think that--

Landes

Can you give examples?

Cone

Well, there was a news conference of different legal organizations after Prop. 209 was passed, and all these different organizations representing race and gender came, and there was no spokesperson to talk about disability. Now, I don't think it had the same direct impact, but it's certainly part of the civil rights movement, and it makes it stronger.

Landes

You're talking about Proposition 209 which outlawed race and color as a criterion in state institutions.

Cone

Right. And which has had devastating results in the California university system. So I think that the broader the movement, the stronger it is. I mean, just on that level we are stronger. We are stronger when we're allied with the broader movement, and the broader movement is stronger when we are part of it.

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The Grove City decision [Grove City College v. Bell, 1984 Supreme Court decision], which basically undid significant federal civil rights protections, after that decision came down from the Supreme Court, many civil rights organizations fought very hard for several years to get the Civil Rights Restoration Act passed, which basically restored things to pre-Grove City level. And DREDF--Disability Rights Education and Defense Fund--played a critical part in organizing people around the country and educating people and lobbying on the issue. We brought a lot of--we added a lot of strength to that effort.

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Cone

We were still talking about the relationship of the disability rights movement to the broader movement. I think that down on the local level, in the actual day-to-day issues that are being dealt with, that the disability rights movement doesn't necessarily--it is not necessarily as linked with the immigrants' movement, or the race and gender movements as we should be. I think you still see, for instance from the women's movement, pro-choice advocates still say some pretty outrageous things about disability when they're talking about the right to abortion. Now, I think that it's an issue that is absolutely up to an individual woman, but every now and then I'll hear something, and it will just make me cringe.

Landes

Can you give an example?

Cone

Well, it's one of the first lines of defense, I think, when abortion rights advocates are talking about why women would want to have an abortion. Well, they might have a child with Down's syndrome. I can't give a specific example right now, but it still is one of the things that is considered legitimate to bring up. I have friends who have been around the movement--I mean, I have a friend who had an abortion because she was carrying a fetus with Down's syndrome. She'd been around the movement for years.

Landes

How did that make you feel?

Cone

I couldn't talk to her about it. Just couldn't talk to her.

Landes

How did you feel, though?

Cone

Very disappointed. Very disappointed. But you know, I thought, it's her decision. It is her body, it's her life. I am pro-choice, but I'll tell you that that kind of thing really--it's hard for me to swallow.

I think that there is not--well, I think the lack of representation in the leadership of the disability rights

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movement--not just the disability rights movement, the whole independent living movement--of people of color is a reflection of just the institutional racism. And I think that there is some consciousness and desire to reach out and develop nonwhite leadership. And I think it is very difficult, because people are so separated, and--

Landes

So you still see that as a major problem?

Cone

Yes.

Landes

Within the movement.

Cone

Yes. I think that in the minority communities, that perhaps (and you can't lump all communities together) each community has its own way of dealing, and there's variations within each community. But churches in some communities, say in the black community or in the Latino community, play a very big role in caring for people, shall we say. But I have had a number of times where people have come to me and said--actually, this has happened to me three times in about the past year, where there is some young Latino guy who has broken his neck. One got shot in a drive-by, and I think one got in a car accident, and I don't know what the deal was with the other one. And they were thinking about suicide. I was asked if I would talk to them, and I didn't think I was the right person. I thought Phil Chavez over at CIL. You know, he's a quad, he's married. He would need to take a translator with him, but you know, he's somebody who could actually reach them. So I've tried to make those link-ups.

But I think that people come to me because they know I speak Spanish and they know I'm around a bunch of people who are Latinos. And it's very frustrating, because every time we hire some--well, we did just hire a Latina for our parent advocate at DREDF--but every time there's a position open, it's just--we do all kinds of outreach, and we're not getting to people. It's real hard, and I think that one part of it may be that just because white people in general are more privileged, we have been able to access the services, from Rehab--the Department of Rehabilitation --to services in the schools to community services, that it's been more available and therefore, people are more likely to come to the movement.

I don't really know that I have any sort of--I don't even have an analysis of the problem, much less an answer. But I sure know that it is a big problem.

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Contradictions within the Disability Rights Movement

Landes

Let's talk about some of the contradictions within the movement. To what extent do you think that the issue of racism and sexism and homophobia play themselves out within the disability rights movement?

Cone

In its heyday--[laughs] I shouldn't say that--in the days of more activism, when--

Landes

You're talking about the mid- to late seventies?

Cone

Yes. Or early to late seventies.

Landes

Throughout the seventies.

Cone

Yes. And even in the early eighties, my feeling was that women were playing a very prominent role in the movement. Judy Heumann, Eunice Fiorito, I was very involved in playing a national role in the transportation issue. I think that recently, Judy is now in a very high government position, and Marca Bristo was head of the National Council on Disability, but I think that--has any woman with a disability gotten a MacArthur?

Landes

We don't think so.

Cone

I find that kind of astonishing that someone like Mary Lou Breslin has never won one of these honors, you know, a Betts Award or a MacArthur. Now, that may be because she's more radical. It may be because she's involved in the civil rights policy end of things, and that it's less controversial to provide services that do not so directly attempt to change the system. But I think there's a tendency right now to sort of turn Ed Roberts into our Martin Luther King, and to attribute things to him that were actually the result of a collective effort.

Landes

Including the enormously important role of women within the civil rights movement in building the base.

Cone

Absolutely, and in that way, it's sort of similar to what happened in SDS [Students for a Democratic Society]. But the feminist movement has changed things so much that that couldn't possibly be the case today.

Landes

Say what you mean by that.

Cone

Well, within SDS, there were many women who were very competent organizers, who had great organizational skills but also great

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theoretical skills. But this is the early days, the late--well, the mid- to late sixties, before SDS split into its three factions. And at some point, I think that the more radical wing of the feminist movement just exploded right out of SDS, because I was in SDS, and the women really were expected to do--I mean, I was the editor of this newsletter. It was sort of a campus radical newsletter. I spent hours and hours collecting the articles and editing them and typing them out and justifying the margins because we didn't have computers in those days, and organizing all kinds of activities, from fundraisers to showing of movies about Vietnam to whatever. And the men would get up and give all the speeches, and they would dominate the meetings, and there was not an effort to develop women.

Now, it's certainly not comparable to that, but there is still, I think, a tendency for women to not seek recognition--

Landes

For them not to seek it, or that it's not afforded to them as a result of the sexism?

Cone

I think it's probably both. But you know, Judy was absolutely out there. When Judy and Ed and Joan Leon were the triumvirate that was leading the World Institute on Disability, Ed was the person who always got asked to do interviews. Now, he was very charismatic, and he was definitely a leader. He was a true leader. And he could give a great interview, because of who he was and what his personal situation was. But Judy was much more incisive, and she was also much more carrying the load of leadership at WID on a day-to-day, month-to-month basis. She was the juice that kept the place running. So that kind of thing still exists.

The Crucial Role of Mary Lou Breslin at DREDF

Landes

You mentioned Mary Lou Breslin. Can you sum up how you see her role in the movement, historically?

Cone

I believe she has played an enormous, enormous, profound role, and that very few people are aware of it. Part of that is Mary Lou's character. She does not like people to take note of her. But Mary Lou co-founded--well, Mary Lou was responsible for the original project to train people about their rights under Section 504 after the HEW 504 regulations had been signed. It was a very large project which used a peer trainer model, so Mary Lou recruited an absolutely dynamite staff and took care of all kinds of logistical issues, and they trained people all over the United

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States, both parents and people with disabilities. To do the training, they recruited people with disabilities and gave them a very intensive trainer training.

And then, they trained thousands of people in different states, and they had just this incredible, incredible operation where they would make sure that everything was accessible--they set the standard for finding accessible hotels to bring people in, and to provide them with attendant care, and to have wheelchair mechanics on hand, and sign language interpreters, and all the materials were in alternative formats for people with vision impairments. The training materials and manual were just excellent.

But in any case, the people who were trained in that initial effort--over those several years--formed a real grassroots network. They felt absolutely empowered, they had what was called a rights-bearing attitude, and they trained them in negotiation skills, and they trained them in strategies for--they didn't just train them in the content of Section 504. They also trained them in how to try to implement it in your community, when to negotiate, how to negotiate, when to consider filing a complaint--all the different approaches that you could take. So they really helped energize activism, those trainings.

Then after those trainings were finished, Mary Lou, along with Bob Funk and some of the other people at the Disability Law Resource Center--they saw the need for a disability legal defense fund--and they founded DREDF, the Disability Rights Education and Defense Fund. Mary Lou played every kind of part that you can play in the building of DREDF. She knew who would be good at what. She was the deputy director of the organization--and Bob was the executive director, in the beginning. And Bob had the broad vision of a legal defense fund. And Mary Lou had it also, but Bob was sort of an organizational genius, not in terms of day-to-day organization, but in terms of where the disability civil rights movement should be going and how it should be organized.

Mary Lou theoretically--I think she's as good as anybody in the country, and at many times, she absolutely--DREDF was founded in 1979, and Mary Lou, I think, is still the spiritual but also day-to-day leader of DREDF. And DREDF has many significant civil rights victories under its belt. At this time, we have got three briefs at the Supreme Court. One is an amicus brief on behalf of Congress about whether or not non-symptomatic HIV status is a disability. I mean, we're talking major here.

Another one where we are on the pleadings representing the plaintiff--it's a prison case, that is--on the other side, there

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are aligned against us all of the attorneys general, whatever the national council on mayors, the national governors' association--all these organizations of public officials who don't like the Americans with Disabilities Act and who don't want to see. Basically it challenges--it's about prisons, but the underlying issue is, can the federal government force states, counties, and municipalities to do all the things that are required by the ADA? So it's very important.

Landes

And you see Mary Lou as continuing to play a pivotal role in developing the political strategies for this legal work?

Cone

Absolutely, absolutely. I think she has carried DREDF on her shoulders for years. At one point, Bob Funk was still the executive director, but the reality was that Mary Lou was performing all the functions. He was moving away, and then physically moved off and took a job in the Bush administration. And Mary Lou, she's very good at knowing who would be good in what type of position and in supporting them in that. She's very good in knowing what the tasks are that need to be accomplished. She's very good at collaborating, and I think that she has collaborated theoretically with the lawyers, with the lobbyists, with--I mean, she is a theoretical leader.

And so the Fair Housing Amendments Act, which got the Fair Housing Act to cover people with disabilities, the Civil Rights Restoration Act, the Handicapped Children's Protection Act, of course the Americans with Disabilities Act--DREDF played the leadership role in all of this legislation. With the Civil Rights Restoration Act, it was very much an equal partner with other civil rights constituencies.

And Mary Lou is very, very involved in a behind-the-scenes role. And I think more than anybody, she deserves credit for what DREDF has accomplished. I think that the legislative map of the United States would be totally different if it weren't for DREDF. I think the whole world would be totally different if it weren't for the ADA. The ADA is a huge success legislatively. It's a tremendous example.

And now, DREDF is faced with the task of trying to defend the gains. There is this backlash which was represented by those cases that I was talking about. There's a terrific backlash in the media. They highlight--they'll find the most ludicrous case they can find and highlight it. There is lack of enforcement. The EEOC [Equal Employment Opportunity Commission] is backlogged. The Department of Justice does some very good stuff, but it doesn't go as far as it should. There is a long way to go in

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terms of implementation and making sure that things are being enforced.

Mary Lou is working now on this project, just this huge task. She's heading up this project which basically has no full-time staff, and it's got like four people working on it. A researcher--

Landes

What's the task?

Cone

It's basically to look at the enforcement of four key civil rights laws. Oh, I forgot to mention that DREDF has been instrumental in defending strong provisions in the Individuals with Disabilities Education Act, IDEA, the special education act. Year after year, the DREDF attorneys and lobbyist just fend off these things that are very punitive in terms of children with disabilities. They work closely with Judy on that, and the congresspersons who support the right to a free appropriate education for kids with disabilities really rely on DREDF for analysis and bringing in parents to testify and all of that kind of thing. Anyway.

Landes

Who are the other three people that work with Mary Lou on this issue?

Cone

Jane West, who is a--she used to work on--I believe she worked on [U.S. Senator] Lowell Weicker's staff on the disability policy subcommittee. Jane is just a brilliant woman. She's in Washington, D.C. And then there's a woman, Nancy Mudrick I think, who's at the University of Syracuse, who is doing the statistical analysis, and a woman who has some disabilities--I don't know what they are--who works out of the Washington office collecting a lot of materials.

But it is just enormous. They started with the Air Carrier Access Act and basically found out that there's just no enforcement mechanism. There is really no way for people who have been discriminated against to get any kind of action, that the place you file the complaint is with the airline itself, and what are they going to do with it? You know, the Department of Transportation has not taken responsibility.

Then they're going to look at the ADA, IDEA, and the Fair Housing Act. It entails looking at every piece of material that's been published by the federal agencies about implementation, it entails looking at all the complaints that have been filed and what has been the disposition of them, what are the programs for training and technical assistance that exist all over the country. It is so immense, and Mary Lou is such a perfectionist, I don't know how she's going to come out of this project sane, because it

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is seriously underfunded and underresourced for what it's looking at. But I think it will produce some results that will be very, very important. And we need to know where we are.

Pat Wright's Role at DREDF

Landes

You've been talking about the role of Mary Lou Breslin and also Bob Funk at DREDF. What's your assessment of the role of Pat Wright, both at DREDF and with the passing of the ADA?

Cone

I think Pat is just a strategic genius. I think she is a hardcore character. She is a piece of work. But when she is on Capitol Hill, she accomplishes things that I don't think anybody else could do. During the period leading up to the ADA, she was called the General by--I don't know who started it, some congressman or senator called her the General. And she is very, very respected on Capitol Hill. They know that she's going to fight hard, but she also knows how the game is played. She strategically knows when you push hard and when you pull back and how to push hard again.

I think that DREDF was very important in resolving all sorts of issues and pushing the agenda when the ADA was being debated. I remember one time we were sitting around watching C-SPAN when Congress was debating the issue of whether or not they should exempt food handlers with AIDS from--whether they should be covered. Which is stupid. People with AIDS--you can't get AIDS because your waiter has AIDS.

Anyway, so I think Pat just has an incredible ability to assess people and forces in the movement, and to understand how they can come together and work together, and where they should go, and what are the next tasks. I first saw that in the 504 sit-in, when she was sort of--she had been running the Antioch program, and so she came to the sit-in in that capacity, because she was teaching some class that had to do with disabilities at CIL. She ended up doing attendant work, but she was really strategizing a lot with Judy and me, and particularly with Judy. When things would get to the point where we'd be stuck, she would take Judy to the bathroom, and Judy would come back and she would have resolved the problem, because Pat would have talked to her.

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Assessment of Key Issues Facing the Movement

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Landes

Kitty, let's turn and look at how you assess the state of the movement today in the late 1990s. Are you generally optimistic or pessimistic, or both?

Cone

I think both. [laughs] I think that the movement, as with any movement--the women's movement, the civil rights movement--went through a period of great upsurge and activism and super-commitment on the part of large numbers of people to be leaders and to be in the streets and to work very hard for legislative gain. And I think we're in sort of a--at least on the civil rights front--we're in sort of a consolidation phase, where the people who were once leading the demonstrations now hold high government positions, and people who were running the little law centers are very prominent in the administration. I think that if you look at the independent living centers today, many of them are run by people who don't have disabilities. There has been some conservatism that has set in.

I also used to worry that we weren't developing a younger generation to take our place, and that in fact, the younger generation felt an entitlement to what we had struggled so hard for, which of course, is right that they should feel that entitlement. That's what we were doing it for. But that there wasn't an interest on the part of young people to become involved in the movement, that they took its gains for granted and didn't understand its history or its relevance.

I think that's changing. I see young people now beginning to--I do think there is a great ignorance on the part of a lot of disabled people about the actual history of the movement, and I think that that's why, for instance, the work done around the twentieth anniversary of the 504 sit-in was important, because it sort of illustrates one example of the struggle in its early stages.

I feel like not only are more younger people beginning to get involved, but I feel like the movement is beginning to tackle some new issues which for one reason or another have been lying dormant as part of the national agenda.

Landes

What issues?

Cone

One of them is the issue of attendant care, personal assistance services, that ADAPT has for the past several years focused very heavily on the issue of attendant care and trying to get people out of nursing homes, and to get some kind of federal legislation

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to provide for people to have personal assistance services. They have, in their usual civil disobedience, action-oriented approach, raised the issue at conferences of the nursing home industry, meetings of the Health and Human Services Agency [HSS], with HHS Secretary Donna Shalala, and with the Congress. They were really going after Newt Gingrich to get him to sponsor a bill, and there now is a bill--there's a couple of bills, but one of them is called MiCASA [Medicaid Community Attendant Services Act], which is an attendant care bill. I don't know how far it will go, but it's definitely caught people's attention.

I should say that one of the interesting developments in the movement is the contribution that technology has made to it, because a lot of people are on these--feel that they are tied to, for example, the Justice For All Coalition, because they receive all of their communications. And Justice For All, which Becky Ogle and Fred Fay and Justin Dart pretty much ran by putting out an informational sort of newsletter on the Internet, follows a lot of different issues in Washington and around the country. So they've been informing people, and a lot of disabled people who may not be able to be involved, because they are in a situation that just doesn't allow them to, can and do hook up and go on line, and they find out what's happening through Justice For All, and there are a lot of disability home pages and a lot of information out there.

Landes

So that's a way in which you feel that technology has made it easier for disabled people to congregate in cyberspace or somewhere out there.

Cone

Exactly, and to try to have an impact where they will--it's very easy to fire off an email about the issue that you're concerned about. So people feel that they are informed and aware and involved when they're able to be active on that level. So attendant care is an issue that's getting taken up.

Another issue that there's a lot of discussion about, and I think there's dangers involved, but is the issue of Social Security disincentives. There's some new language that's being used about it now, but it's that whole--it's work disincentives in general, but Social Security itself, the Social Security Administration, is very interested in why, now that the ADA has passed, why are people not getting off the disability rolls and going to work? So I think there is going to be an attempt to seriously address the fact that people are frightened if they take a job that they will lose their Medicare, or their Medicaid. They're afraid of losing their attendant care, if they have it, that goes along with being Medicaid-eligible. It's a very important issue, and it's I think one of the big things that has

---

kept people--well, it's been a contributing factor to keeping people on the rolls.

Landes

So what do you see as the positive aspect of this issue?

Cone

That if there's discussion about it, and policy makers actually understand that people are not going to be willing to go to work if it means that they are not going to have any health care coverage and not have any attendant care, that maybe there will be some attempt to pass some legislation that says, "People can keep their Medicare, or they can keep their Medicaid, and still take a job, if their employer doesn't have something comparable, and they can get it back if they lose their job." Because you can't get health care coverage most places if you have a disability. It's been a big factor for many people who could have gone out and taken jobs. I mean, people have committed suicide over the issue of losing their Medicare.

Landes

And what's the down side of this issue? What's your concern about it?

Cone

Well, I think there's a danger that somehow or other, people will be forced into employment situations that they may not want. I have this concept that there's a big conspiracy with the Department of Rehabilitation and Social Security and some giant computer that's just following every move that we make [laughing], which I don't think is too far off the mark. You know, I think Social Security is very concerned about their statistics and getting people off the rolls, and I think we have to be conscientious that--.

Landes

So you have a concern that people will be coerced from the rolls?

Cone

Yes.

Landes

What are some of your other concerns about the shape of the movement and the movement's future?

Cone

Well, as I said before, I think that we're experiencing a big backlash around the ADA. The ADA has not even begun to do what it needs to do, and the backlash is already pretty severe on the part of the state and local governments, and certainly there are many employers who don't like it. The definition of disability is being narrowed down.

I think there is a long way to go in the education field. We've had this mandate for the least restrictive environment and appropriate education, but I don't think that any state really is in compliance with IDEA. I think every single state is out of

---

compliance. I mean, that's pretty damning information. On the other hand, I think school kids with disabilities are doing a whole lot better than they were when Judy Heumann didn't get to go to school until she was however old, nine, and then went to a segregated school.

I think that we've made significant--I think there's been significant change in the built environment, that you can go to most places in the United States and find an accessible bathroom where you can go to the bathroom--that you can use. There are changes, particularly the big chains, you know, McDonald's and Taco Bells and places like that, in hotels and motels and government buildings and restaurants, that yes, they are complying with the ADA, and I think litigation and negotiations with the Department of Justice have helped. But that that is an area where there's been very big movement forward.

On the other hand, in the employment area, I think that there is still discrimination and that the EEOC is--oh, I think that it's attempting to deal with it, but it's just--it's immense.

More on Public Attitudes towards People with Disabilities

Landes

What about the issue of attitudes?

Cone

Well, that was where I was going to say I think that the problem is the greatest. The other day, yesterday, I was in Home Depot, and a saleswoman was taking me from one department to another. She was walking fast, and I was following right behind her. This man said to me, "Oh, no, you're speeding, you're speeding. Stop speeding." I went a little further, and he said, "Hey, stop speeding, stop speeding." And he was saying it, you know, in like a joking and attempting to be friendly fashion, and I just thought, What on earth is in his mind? I said to the salesperson, "Why does somebody think because of the way you look, they can just start calling out at you in front of everybody else and giving you orders and making a joke out of you?"

Landes

And what did the salesperson say?

Cone

She said, "You're absolutely right. I don't know what he thought he was doing." But I encounter that every time I go out. But this was a little more intense, because he kept yelling it right through the Home Depot store.

---

Landes

What are other ways that you continue to experience prejudice and discrimination as a disabled person?

Cone

I think I'm treated with a great deal of paternalism by all kinds of people. I certainly experience it in my job. I think that in some ways, the philanthropic world is almost the worst, and maybe it's because they're used to being in the care-giver role, "We're giving out the money so you can help these people." But I have been to conferences where people from the foundation world and corporate community relations people and grantees have gathered together to talk about what's happening in the world of grantmaking, or at conferences, or just even in meetings with people who have control of the pocketbook, where the paternalism about disability was so incredibly profound that I couldn't believe it. I thought, This is why they don't understand that disability is a civil rights issue.

Landes

Can you give a specific example?

Cone

Well, okay. I went to a regional meeting of The Independent Sector, which is an organization which brings together people from nonprofits, philanthropic organizations, foundations, corporations, and gets them talking to each other. An Independent Sector national conference had been held shortly before. So the person who was the incoming chair of Independent Sector, or the incoming executive director, who was an incredibly sharp woman, Latina, totally liked her when she was talking about the problems that were being faced by nonprofits, in terms of lobbying restrictions that were being proposed in Congress, and she gave a good talk.

And then, I went over to talk to her afterwards to tell her that I was very pleased that--I didn't go to the national conference because I don't like to travel for these things, but Marilyn Golden and Pat Wright had gone from DREDF. I told her I was glad that they had held a workshop on the ADA (which wasn't really well attended, which tells you something about where people are at) and that I was glad that they had honored Justin Dart. He received their--whatever their most important award was. And Justin gave a talk.

Now, anyone who has ever heard Justin give a talk knows that he gives an extremely articulate and militant and inspiring speech. And he talks--he speaks in a way that is almost like, I think Justin is actually a Republican, but he talks as if he's some old Socialist agitator or something. [laughs] When he sends out greetings, or he writes a thank-you letter, or whatever, or he buys a page in somebody's dinner booklet or something, he writes,

---

"Dear Brothers and Sisters in the Great Struggle for Humanity." That's the way he talks.

But anyway, he had given a speech in accepting his award. I said to her, "I'm so glad you honored Justin Dart," and she said, "Oh, yes, after he finished speaking, it was so wonderful." She said something to the effect of, "We were all so inspired that out of such a frail little body could come such a courageous and inspirational voice, and that everybody had tears in their eyes." And I just thought, Good God. She said exactly the wrong thing. It was like, Wait a minute. Why are you talking about his body? "Out of his frail body." It was like, uh-uh.

[A brief passage has been withheld from on-line publication.

Landes

As if she might--

Cone

I was childlike.

Landes

As she might do with a small child.

Cone

Yes. It was as if I were childlike. And our director of administration, Sue Stevenson, who was with me, just rolled her eyes, and she said to me afterwards, "Shall we leave?" and I said, "Let's get the hell out of here."

But I've had that same experience with many, many people. It's very frustrating. I think it is very much--in some ways, it's worse with foundation officers, and I don't know why.

Landes

Can you give some examples of how you think--examples of ways in which you've been treated that really speak to how far we've come in terms of people's attitudes? Ways in which you are seen as a vital, strong, independent person? Do you feel that people also, that many people have learned that lesson?

---

Cone

I think, if I were going to get a job today and I were young, that I probably would have a much easier time of it than I would have at the time that I left college in the sixties. This is very interesting, but I have always--I have led a very privileged and sheltered life. I went to very, very good schools, and I got tremendous training in the SWP, so that when I was in my early twenties, I was giving a speech--you know, I recently went to hear Howard Zinn and Studs Terkel talk. I remembered that in 1967, in the fall of '67 I think it was, I spoke on a platform against the war with Studs Terkel. I've spoken to huge crowds of hundreds of thousands of people. When the war against Iraq broke out, I was immediately asked to go and give a speech. Daniel Ellsberg was speaking, and Joan Baez was speaking, and [Reverend] Cecil Williams was speaking, and all sorts of people were speaking, and I was speaking.

Because I was perceived as a leader in the movement, the disability rights movement, when there was an antiwar rally, or if there was a gay rally, or if there was a women's rally, I would be asked to come and speak. A lot of times I'd turn it down, but I think that I haven't experienced in the movement--which is where I get a lot of my feelings about myself from--I have been considered an equal, or a competent person.

So in some ways, I've been considered an irritant by the transit authorities and the various agencies that I have worked with or on or against to try to get equal services for people with disabilities. But it is in the foundation world where I really feel it. It's just so interesting.

I'm around numbers of lawyers. I don't have a lot of social contacts with people. I feel it in the street, I feel it in the grocery store. I feel it when people yell at me and call out to me.

Landes

To slow down?

Cone

Or, "Do you have a driver's license," or--you know, people say things, just because they see you and they want to say something to you.

Landes

And they feel they have a right to.

Cone

Yes. Oh, there was something I wanted to say: I think that the way that Hollywood has dealt with disability has been pretty damn bad, with outstanding exceptions.

Landes

Such as?

---

Cone

Such as "The Men," with Marlon Brando, which was made forty years ago or something. [laughs] Or Geri Jewel was on "Facts of Life." Although I think that Geri Jewel would be the first to tell you that once that role in that sitcom ended, that she could not get a job anywhere else in Hollywood without fighting tooth and nail. Even when they needed an actor with a disability, they'd rather use somebody who didn't have a disability. And I think an awful lot of the images that are portrayed of disability are--there are the--you can break it out into different categories, and I don't think it's changed so much. There's the blind person who's being stalked. There's the evil, embittered person in a wheelchair who is planning to kill someone. There is the helpless person in a wheelchair whom someone is planning to kill. There is the true story, like "Elephant Man." And then there are the made-for-TV movies which take stories of great courage and overcoming of great obstacles, and stories are made about them.

But what you don't see very much of is disability integrated into a show the way it is in life.

---

Reflections on Living with a Disability

##

Landes

We've been talking about how other people define you. How do you define yourself as a person with a disability, Kitty?

Cone

You know, I actually have three disabilities. I'm a recovering alcoholic, and I have multiple chemical sensitivities, which I don't talk about those very much. But I--if someone came to me and said, "You can have the cure," I would probably say, "What I'd really like is a lot of money so that I can have someone drive me any time I want to get driven, or I can afford to go places and have enough attendant care." Whether it's go to the beach and have a really strong attendant that could get me out on the beach, or whatever. Rather than I would want to be able to go and walk on the beach. Because my whole identity is as a person with a disability. My entire history, everything in my life, from where I live, to who my child is, to the people I know and love--everything, my entire course in life was profoundly affected by having a disability. The school, the university I went to. The fact that I moved to the Bay Area because of its good climate. It all had to do with my disability.

So I am thankful for my disability. I feel like the constraints and the choices that it has given me have made me who I am, and you know, I like who I am. My disability is such a--it is so much--everything I do is impacted by my disability, and

---

sometimes I think that I'm very unusual, because I came from such a privileged background. I came from a family that was totally--my immediate family was totally dysfunctional, but my larger family was so nurturing and so warm and dealt so well with the disability, just absolutely incorporated it into how everybody functioned, and that I had the material resources to do a lot more than very many people, probably is one of the reasons why I don't find it to be something that just absolutely constricts me. Like somebody who is living on SSI and has really lousy attendant care and can't get out and be out in the world.

This isn't about how I define myself as a disabled person, but I think one of the areas where prejudice is very deep is in the area of partnerships. I think--and maybe I'm wrong--but I think that had I not had a disability, I think I probably would have appealed to more people as a potential partner than I do, or have. That's been hard to take. It's been hard to know people and be friends with them and know that if I were walking around, that they would consider me a potential partner, and that they don't.

Ask me again what you mean by how do I define myself?

Landes

I think you've been answering that. It's very clear that you're proud of who you are.

Cone

[laughs] Well, I like who I am, yes. I feel like I've had tremendous opportunities in life. How many people get the kinds of opportunities that I've had to participate in such important social movements, the civil rights movement and the antiwar movement? Maybe I wouldn't have done what I did if I hadn't gone to the University of Illinois.

Landes

But it's also clear from the course of these interviews that you've worked very hard to make those opportunities.

Cone

Well, I don't know. I don't feel like I've worked very hard. I feel like I've done what opportunity presented me with--what fate presented me the opportunity to do.

Landes

Kitty, it's been a marvelous process interviewing you.

Cone

Well, I sure have enjoyed every minute of it. You're a wonderful interviewer, and I've loved our sandwiches.

Landes

It's been a lot of fun, and thank you very much.

Cone

Well, thank you, David.

---

---

Transcribed by Gary Varney, Mim Eisenberg, and Shannon Page

Final Typed by Shannon Page

Appendix

Tape Guide

Interview 1: August 10, 1996

Interview 1: August 10, 1996
• Tape 1, Side A *
• Tape 1, Side B *
• Tape 2, Side A *
• Tape 2, Side B not recorded

Interview 2: August 24, 1996

Interview 2: August 24, 1996
• Tape 3, Side A *
• Tape 3, Side B *
• Tape 4, Side A *
• Tape 4, Side B not recorded

Interview 3: October 5, 1996

Interview 3: October 5, 1996
• Tape 5, Side A *
• Tape 5, Side B *
• Tape 6, Side A *
• Tape 6, Side B not recorded

Interview 4: January 26, 1997

Interview 4: January 26, 1997
• Tape 7, Side A *
• Tape 7, Side B *
• Tape 8, Side A *
• Tape 8, Side B not recorded

Interview 5: February 15, 1997

Interview 5: February 15, 1997
• Tape 9, Side A *
• Tape 9, Side B *
• Tape 10, Side A *
• Tape 10, Side B *

Interview 6: June 14, 1997

Interview 6: June 14, 1997
• Tape 11, Side A *
• Tape 11, Side B *

Interview 7: June 21, 1997

Interview 7: June 21, 1997
• Tape 12, Side A *
• Tape 12, Side B *
• Tape 13, Side A *
• Tape 13, Side B *

Interview 8: September 21, 1997

Interview 8: September 21, 1997
• Tape 14, Side A *
• Tape 14, Side B *
• Tape 15, Side A *
• Tape 15, Side B not recorded

Interview 9: September 28, 1997

Interview 9: September 28, 1997
• Tape 16, Side A *
• Tape 16, Side B *
• Tape 17, Side A *
• Tape 17, Side B not recorded

Interview 10: January 11, 1998

Interview 10: January 11, 1998
• Tape 18, Side A *
• Tape 18, Side B *
• Tape 19, Side A *
• Tape 19, Side B *

Interview 11: January 18, 1998

Interview 11: January 18, 1998
• Tape 20, Side A *
• Tape 20, Side B *
• Tape 21, Side A *
• Tape 21, Side B *

Interview 12: April 11, 1998

Interview 12: April 11, 1998
• Tape 22, Side A *
• Tape 22, Side B *
• Tape 23, Side A *
• Tape 23, Side B *

Index

• Abascal, Ralph, 79, 89, 90, 129, 136, 140, 141
• abortion, and disability, 307
• ACCD. See American Coalition of Citizens with Disabilities
• Accessible Services Advisory Committee, 220
• acquired immune deficiency syndrome, and disability rights movement, 252-254, 314
• Activist Handbook: A Primer for the 1990s and Beyond, The, 116
• AC Transit. See Alameda-Contra Costa Transit
• ADA. See Americans with Disabilities Act
• Adams, Brock, 161
• ADAPT. See American Disabled for Accessible Public Transit; American Disabled for Attendant Programs Today
• adoption, disability and, 187-190
• adoption, personal experience, 183-197
• advocacy, financial benefits, at CIL, 98-100
• AFGE. See American Federation of Government Employees
• AFSCME. See American Federation of State, County and Municipal Employees
• AFT. See American Federation of Teachers
• Aid to the Totally Disabled, 90
• AIDS. See Acquired Immune Deficiency Syndrome
• Air Carrier Access Act, 261, 313
• Alameda-Contra Costa Transit, 93-95, 156, 164, 173, 217-220
• Alameda-Contra Costa Transit Accessible Services Advisory Committee, 156-159, 161, 220
• Alameda County Legal Aid, 94
• Alcoholics Anonymous, 182, 251
• alcoholism, 57, 104-105, 182, 192, 250-252, 322
• Allemand, Bob, 119, 139
• American Coalition of Citizens with Disabilities, role in organizing for 504 demonstration, 96, 110, 113-114, 116-118, 129, 144, 171, 174-175
• American Disabled for Accessible Public Transit, 221-231
• American Disabled for Attendant Programs Today, 217, 244, 301, 315
• American Express Foundation, 267
• American Federation of Government Employees, 125
• American Federation of State, County and Municipal Employees, 125
• American Federation of Teachers, 264
• American Public Transportation Association, 91, 159, 168-169, 172, 221-228
• American Public Transportation Association v. Goldschmidt, 172
• Americans with Disabilities Act, 38, 152, 259, 261, 267-268, 270, 275, 312, 313;
  • backlash against, 317;
  • and substance abuse and Human Immunodeficiency Virus, 252-254, 314;
• APTA. See American Public Transit Association
• Architectural and Transportation Barriers Compliance Board, 169
• assisted suicide, 111
• assistive devices, voice activated computer, 284-285
• Atlanta Peace Action Committee, 68-69
• ATD. See Aid to the Totally Disabled
• Auberger, Mike, 221
• Bailey, Nancy, 295
• Baldwin, Anita, 210, 215
• Banks, Dennis, 177
• Barbra Streisand Foundation, 282
• BART. See Bay Area Rapid Transit
• BART Handicapped Task Force, 91-93
• Bay Area Rapid Transit, 86-87, 91-93, 172-173
• Bergman, Emily, 200
• Bergum, Shelley, 176-177, 178, 279-280
• Berkeley, California, first impressions, 74-75,
  • and independent living movement, 85-87.
  • See also University of California, Berkeley
• Berresford, Susan, 267-271
• Berrol, Shelley, 120
• Billups, Dennis, 136
• Bingham, Al, 94
• Black Panthers, 504 demonstration, 122, 124-125, 133, 153
• Blanco, Hugo, 58, 59-61
• Blank, Wade, 230
• Bode, Barbara, 270
• Bond, Julian, 132
• Bowe, Frank, 114, 115, 141, 142, 144, 145-145
• Brean, Edna, 120
• Breslin, Mary Lou, 80, 110, 163, 175, 246, 265, 309;
  • Disability Law Resource Center, 166-167, 170;
  • Disability Rights Education and Defense Fund, 242, 258-261, 265, 267, 268, 270-271, 277, 278, 280, 281, 283, 295, 310-314;
  • 504 demonstration, 129;
  • at the University of Illinois Rehabilitation Center, 28, 30, 32, 36, 37-38, 53;
  • September Alliance for Accessible Transit, 223, 225, 230
• Breves, Joni, 103, 129, 134, 200, 202, 251, 295
• Bristo, Marca, 309
• Brown, Jerry, 80
• Brown v. Board of Education, 155
• "built" environment, 266, 318
• Burton, Phil, 134, 138, 154-155
• Bush, George, 175
• By Trust Betrayed, 111
• Califano, Joseph, 115, 133, 138, 141-141
• California Association of the Physically Handicapped, 76, 94
• California Homemakers Association, 89
• California Rural Legal Assistance, 79, 81, 87-88, 129
• California Youth Authority, 263
• Cannon, Dennis M., 93, 168-169
• CAPH. See California Association of the Physically Handicapped
• Carter, Jimmy, 114, 180
• Casanova, Ticia, 202, 209
• CBO. See Congressional Budget Office
• Center for Independent Living, Inc., 38, 66, 147, 176, 279;
  • Community Affairs Department, 80-81, 95-96, 98, 156, 166-167;
  • Disability Rights Center, 118-120, 121;
  • dissatisfaction with, 246;
  • first impressions, 74-75;
  • Jobs Partnership Training Act grant, 233-234;
  • lack of structure, 84-85;
  • Kitty's role as organizer, 95-98;
  • reflections on (1989), 239-240, 241-244.
  • See also Computer Training Program
• Central Labor Council, 123
• Chavez, Phil, 83, 308
• Children's Defense Fund, 119
• Children's Home Society, 188-189
• Chinatown Community Development Committee (Oakland), 76-77
• Churchfield, Ray, 176
• CIL. See Center for Independent Living, Inc.
• civil disobedience, 116-118
• Civil Rights Act (1964), 270
• civil rights movement, 25-26, 298;
  • Friends of SNCC, 45;
  • NAACP, 26, 33-35, 38, 43-44, 45, 126;
  • parallels with disability rights, 118
• Civil Rights Restoration Act, 307, 312
• Clabaugh Act, 50-52
• Cleveland Amendment, 169, 171-172
• Clinton, Hillary, 217
• Coehlo, Tony, 268, 279
• Committee for an Accessible Oakland, 76
• Committee for Democratic Election Laws, 73, 122
• Community Services Administration, 167
• Computer Training Program; Computer Technologies Program, 103, 200
• Condon, Kathy, 186
• Cone, George Hutchinson, 8
• Cone, Hutchinson Ingram Jr., 1-3, 53-54;
  • estrangement from, 45-49
• Cone, Jorge, 197-207, 221, 231-233, 288-289, 290-294, 299-303
• Cone, Molly Mattis, 1-2, 5-6, 10, 12, 40-42
• Congressional Budget Office, 168
• Cooke, Ed, 270
• Cowell Hospital residence program. See University of California, Berkeley
• Cranston, Alan, 107, 144-147, 171
• CRLA. See California Rural Legal Assistance
• curb-cuts/curb ramps, 76-78
• Dadak, Judy, 186
• Dahl, Dale, 132
• Darensbourg, Denise, 136, 140
• Dart, Justin, Jr., 274, 275, 316, 319
• Davies, Jill, 286
• Delancy Street Foundation, 122, 125, 130, 164
• DeLorean, John, 162
• Dellums, Ronald, 199
• Department of Education, U.S., 263
• Department of Health, Education and Welfare (HEW), U.S., 112, 136
• Department of Health and Human Services, U.S., 316
• Department of Justice, U.S., 312, 318
• Department of Rehabilitation, California, 87, 284, 308
• Department of Transportation, U.S., 113, 313
  • 504 Regulations, 158, 159-160, 168-169, 172, 218
• Department of Vocational Rehabilitation. See Department of Rehabilitation, California.
• Dewick, Faith, 200
• DIA. See Disabled in Action
• DiAngelo, Nancy, 83, 128
• Diaz, Steve, 179
• Dibner, Eric, 80, 83, 97, 100
• Dillon, Dorothy, 66, 72, 102-103, 122, 124
• D'Lil, HolLynn. See Fuller, HolLynn
• DLRC. See Disability Law Resource Center
• disability, attitudes toward, 12- 13, 35-36, 53, 65-66
• disability, childhood experiences with, 3-6, 9-15
• disability, diagnosis and progression, 3-6, 9, 11-15, 55
• disability, experiences with discrimination, 13-14 21-23, 54, 183-185, 245-246;
  • experiences with paternalism, 265-266, 318-320
• disability, family reaction, 3-6, 23
• Disability Law Resource Center, 166-167, 169, 170, 173, 311
• disability, and parenting, 185-187
• disability, reflections on, 322-323
• disability and race, gender, and poverty, 307-310
• disability rights, as a civil rights issue, 53, 65-67, 118
• disability rights movement, Berkeley's advantages, 85-87;
  • comparing Berkeley and University of Illinois Rehabilitation Program, 81-82;
  • contradictions, 309-310;
  • and foundations, 266-277;
  • and immigrants' rights, 261-262;
  • and juvenile justice, 262-263;
  • reflections on "big issues," 244-245, 301-302;
  • reflections on future, 304, 315-318
• Disability Rights Center, 171
• Disability Rights Education and Defense Fund, 23, 38, 108, 167, 170, 174, 176, 228, 214, 228, 229, 242, 249, 252-253, 307;
  • Development Partnership Board, 257, 281-287;
  • and foundations, 266-277;
  • Kitty's assessment of, 257-264;
  • Lawyer Referral Service, 255-256, 279, 281;
  • Lawyer Referral Service Advisory Committee, 256-257
• Disabled in Action, 142
• Disabled and Blind Action Committee, 77, 97
• Disabled Children's Computer Group, 83
• Disabled International Support Effort, 178, 181;
  • trip to Nicaragua, 178-182
• Disabled Peoples' Civil Rights Day, 174-178
• DISE. See Disabled International Support Effort
• DLRC. See Disability Law Resource Center
• Dole Foundation, 273-74
• Dole, Robert Joseph, 99
• Donald, James, 136
• DOT. See Department of Transportation, U.S.
• DR. See Department of Rehabilitation, California
• Draper, Phil, 84-85, 107, 108
• DREDF. See Disability Rights Education and Defense Fund
• Easter Seals, 76
• Eckels, Karyl, 240
• Education for All Handicapped Children Act, 154, 269;
  • See also Individuals with Disabilities Education Act
• education, high school, 17-20, 21, 24
• education, university, 32
• EEOC. See Equal Employment Opportunity Commission
• Eidenberg, Gene, 154
• Eizenstat, Stuart, 146, 147
• Environmental Access Network, 248
• environmental disability. See multiple chemical sensitivity
• Equal Employment Opportunity Commission, 256, 278, 312, 318
• Fair Housing Act, 270, 273, 312, 313
• Fair Housing Amendments Act, 261, 312
• Farmer, Brenda, 171
• Fay, Fred, 316
• FDR's Splendid Deception, 111
• Feinbaum, Sandy, 243
• feminism, 63-65, 309-310
• Ferreyra, Nancy, 213, 215, 218
• Fiorito, Eunice K., 138, 142, 144, 309
• Fiorito, Frank, 138
• Fitzgerald, Maureen, 107
• 504 demonstrations. See Rehabilitation Act of 1973
• 504 Emergency Coalition. See Rehabilitation Act of 1973
• Ford Foundation, 266-271, 275, 276, 277
• Ford, Gerald, 113
• Fortney, Olin, 118, 136, 140, 176
• Frank Evelyn, 94
• Frank, Rudy, 33-35, 38-39, 53, 298
• Friends of SNCC, 45
• Friends Together Forever, 283
• Fuller, HolLynn, (HolLynn D'Lil), 136, 151
• Fuller, Louise, 283-284
• Funk, Robert J., 166-167, 170, 260, 311
• Fussy, Tom, 74
• Gallagher, Hugh, 111
• Galloway, Don, 83
• Garrett, Jan, 260
• gay issues. See sexual orientation
• General Motors, 162
• Gill, Gary, 118, 167, 176
• Gill, Linda, 150
• Gilstrap, Jack, 226-227, 230
• Gingrich, Congressman Newt, 316
• Gizz Kids, University of Illinois, 31-32, 37-38
• Gleich, Jim, 278-279, 280
• Glide Memorial Church, 122, 125, 201, 228
• Gnaizda, Bob, 214
• Golden, Marilyn, 179, 223-225, 230, 259, 274, 319
• Goldschmidt, Neil, 162
• Goodlataw, Paul, 160
• Goodlet, Carlton, 133
• Gore, Tipper, 286
• Grove City College v. Bell, 307
• Grumman Aircraft, 162
• Guber, Guy, 118, 167
• Handicapped Children's Protection Act, 312
• Harkin, Tom, 279
• Harris, Avril, 128, 202, 208, 251
• Harvey, Jeannette, 282, 295
• Hayden, Tom, 123
• Hepner, Randi, 251
• Hessler, John, 85
• Heumann, Judith E., 80, 107, 163, 175, 202, 309, 318;
  • at Department of Education, 263, 313;
  • and Disability Law Resource Center, 166, 167, 170;
  • 504 demonstration, 96, 110, 114, 116-117, 118, 127-128, 135, 136, 143-144, 148, 154-155, 314;
  • impact on Kitty, 109-111, 190;
  • September Alliance for Accessible Transit, 223-224, 229;
  • at World Institute on Disability, 210-212, 310
• HEW. See Department of Health, Education, and Welfare, U.S.
• Hilton Hotel, 222, 225-229
• HIV. See Human Immunodeficiency Virus
• Homemaker Chore Program, 75, 87-90;
  • funding crisis (1975), 78-81, 86-87;
  • three modes, 78-79;
  • rights of attendants, 89-90
• Huggins, Erika, 153
• human immunodeficiency virus, and disability rights movement, 252-254, 314
• Hurlburt, Dorothy, 201
• Hurlburt, Henry, 201
• IDEA. See Individuals with Disabilities Education Act
• IHSS. See In-Home Supportive Services
• Immigration and Naturalization Service, 199-200, 205, 262
• Impact Fund, 257
• Inc. Fund, 267, 276.
  • See also NAACP Legal Defense Fund
• Independent, The, 84
• independent living movement, why Berkeley, 85-87.
  • See also Disability Rights Movement
• Independent Sector, 274, 319
• Individuals with Disabilities Education Act, 261, 262, 263, 269, 313, 318;
  • Amendments Act, 264
• In-Home Supportive Services, 78, 88, 100;
  • study at World Institute on Disability, 211
• INS. See Immigration and Naturalization Service
• International Association of Machinists and Aerospace Workers, AFL-CIO, 123-124, 139, 140, 143, 148
• Jackson, Jane, 225
• Jackson, Jesse, 132, 306
• Jackson, Joyce, 136, 143, 176, 178
• Jacobson, Earl, 74
• Japan, 9-16;
  • school in, 10-11
• Jenkinson, Carol, 200
• Jerry Lewis Telethon, 73, 118, 151
• Jewel, Geri, 322
• Jimenez, Ramon, 213
• Johnson, Harold T. (Bizz), 169
• Jordan, Vernon E. Jr., 268-269
• Justice for All Coalition, 316
• Kalmanoff, Alan, 176, 278, 280
• Kaplan, Deborah, 143, 154
• Kemp, Evan, Jr., 171, 279
• Kennedy, Ted, 268, 279
• Keys to Introducing Disabilities in Schools Project, 167
• Kidder, Lynn, 83, 164, 241
• K.I.D.S. Project. See Keys to Introducing Disabilities in Schools
• Kilb, Linda, 259, 279-280
• Kirshbaum, Hal, 83, 251
• Klein, Steven, 153
• Kovic, Ron, 143
• Krim, Matilde, 279
• Krones, Janice, 75, 84
• Lancaster, John, 169, 170
• Landes, David, 179
• Landowski, Kathleen, 94, 158
• Landwehr, Michael, 230
• LaNoue, Bobbi, 136, 148-149, 200, 206
• Latin America, traveling in, 58-61
• Lawyer Referral Service. See Disability Rights Education and Defense Fund
• leadership skills, development of, 38-39, 61-63, 75-82, 95-98
• League of Women Voters, 172
• Lee, Bruce, 129
• Leetz, Tricia, 243
• Leon, Joan, 82, 91, 164, 210, 214, 215, 218, 310
• lesbian issues. See sexual orientation
• Lester, Mary, 83, 164
• Levi Strauss, 275
• Levy, Leslie, 228
• Libassi, Peter, 116
• Lipton, Chloe, 258
• Lipton, Diane J., 228, 258, 264, 280, 283
• Litvak, Simi, 213, 215, 217
• Lomax, Brad, 143, 153
• LRS. See Lawyer Referral Service, Disability Rights Education and Defense Fund
• MacArthur Fellowship Foundation, John D. and Catherine T., 212, 309
• McCarthy, Leo, Lt. Governor, 224
• McEwen-Brown, Janet, 84
• McGregor, Bill, 83
• Mack, Janet, 210, 212
• Mahoney, Constance, 200
• MALDEF. See Mexican-American Legal Defense and Educational Fund
• Maldonado, Joseph, 127-128
• Malloy, Susan, 248
• Manza, Gonzalo, 243
• Mathews, David, 113
• Martin Doug, 99
• Martinez, Kathy, 178, 179, 182, 187, 191, 198, 201, 237, 291
• Mayerson, Arlene B., 167, 174, 228, 258, 260, 264, 270, 277, 280
• McClelland, Steve, 121, 136
• McKennan, Alica, 83
• McKloskey, Jack, 177
• Means, Russell, 177
• media, 504 demonstration, 125, 126, 131-134, 142;
  • Ms. magazine, 136, 212;
  • New York Times, 133, 168;
  • representation of disability by Hollywood, 321-322;
  • Sun-Reporter (San Francisco), 133;
  • Washington Post, 115, 133, 138, 168;
  • White, Evan, 132-134, 142
• Medicaid Community Attendant Services Act, 316
• medical problems, 236-239;
  • multiple chemical sensitivity, 247-250
• medical profession, attitude toward pregnancy (Chicago), 54-55, 183-185;
  • feelings about, 4, 54
• "Men, The," 322
• Metropolitan Transportation Commission, 160, 218
• Mexican-American Legal Defense and Educational Fund, 167, 258, 266, 267, 276
• Mexico, living in, 103-107;
  • lesbian culture, 105-106;
  • disability and, 106-107;
  • trip with Jorge, 234-236
• MiCASA. See Medicaid Community Attendant Services Act
• Mikva, Abner, 172
• Miller, George, 134, 138, 143, 154, 269
• Miller, Paul, 278
• Montoya, Larry, 135, 136
• Morello, Jadine, 136
• Moyer, Jeff, 130
• Ms. Magazine, 136, 212
• MTC. See Metropolitan Transit Commission
• Mudrick, Nancy, 313
• multiple chemical sensitivity, 247-250, 252, 322
• Muni. See Municipal Railway of San Francisco
• Municipal Railway of San Francisco, 160, 161, 223
• muscular dystrophy, 5
• NACCP. See National Association for the Adancement of Colored People
• NAACP Legal Defense Fund, 167, 258, 266,
• Nakao, Shirley, 167
• NAPIL. See National Association for Public Interest Law
• National Association for the Adancement of Colored People, 26, 33-35, 38, 43-44, 45, 122, 126
• National Association for Public Interest Law, 271, 272
• National Civil Rights Coalition, 306
• National Council on Disability, 309
• National Council on Foundations, 273, 276
• National Council on Independent Living, 244, 246
• National Organization of Women, 123, 224, 258
• NCIL. See National Council on Independent Living
• Neumark Phil, 79, 90, 129, 136, 140, 154, 188, 191
• New York Times, 133, 168
• No Pity, 270
• Noriega, Alma, 101-102, 103, 185
• Noriega, Claudia, 101, 103, 185
• Norman Foundation, 273
• Northern California Grantmakers Association, 276
• Not Dead Yet, 111
• NOW. See National Organization of Women
• Nugent, Timothy J., 30, 36
• Obledo, Mario, 79, 89
• Ogle, Becky, 316
• Oka, Bruce, 140
• Okuna, Ken, 84
• Olcese, Richard, 223
• Older Americans Act, 213
• Open Society Institute, 272
• ORD. See Organizacion de Revolucionarios Deshabilitados de Ernesto "Che" Guevara
• Organizacion de Revolucionarios Deshabilitados de Ernesto "Che" Guevara, 179-182
• Orientation Center for the Blind, 273
• Owens, Mary Jane, 118-119, 120-121, 134, 136
• Pachovas, Michael, 225
• Pacific Research and Training Alliance, 252
• Pacific Center for Human Growth, 250, 251
• Paralyzed Veterans of America, 169
• paratransit, 168
• Parker, Karen, 136, 179, 182, 202
• PAS. See Personal Assistance Services
• Pechen, James, 118, 129, 134
• Perlman, Itzhak, 267
• Perotti, Linda, 83
• Personal Assistance Services, 217, 244-245;
  • funding issues, 75, 78;
  • models of, 78-79;
  • research project at World Institute on Disability, 210-211, 212-214
• philanthropy, attitude toward disability rights issues, 266-277
• Physically Disabled Students' Program, UC Berkeley, 80, 85
• PILCOP. See Public Interest Law Center of Philadelphia
• Piras, Pat, 160, 173, 218, 228, 229
• political evolution, conservative, 26-27;
  • college, 33-35, 38-39;
  • disability rights movement, 75-82, 95-98;
  • election to University of Illinois Student Senate, 39-40;
  • feminism, 63-65;
  • organizer for Socialist Workers Party, 61-63, 66-69;
  • Trotskyism, 51-52
• Proposition 13, 159
• Protection and Advocacy, Inc., 272
• PRTA. See Pacific Research and Training Alliance
• Public Advocates, 214,
• Public Interest Law Center of Philadelphia, 162
• Puerto Rican Legal Defense Fund, 267
• PVA. See Paralyzed Veterans of America
• psychiatric disability, stigma, 254
• race issues, segregation, and prejudice, experience with, 24;
  • Augusta, Georgia, 24, 42-44;
  • Jacksonville, Florida, 6-8;
  • Richmond, Kentucky, 18-20
• racism, reaction to, 6-8, 17-20, 24, 42-44
• Raggio, Jim, 169
• Reagan, Ronald W., 90, 174
• Rehabilitation Act of 1973, Section 504, 107, 109, 171;
  • alcoholism and drug addition, 122-123;
  • demonstrations, San Francisco Sit-In, 68, 95, 109-111, 127-155;
  • 504 Emergency Coalition, 119, 121;
  • building the coalition, 120-122;
  • Congressional hearings, 153-155;
  • importance, 151-153;
  • media, 125-126, 131-134;
  • Washington 504 delegation, 136, 138-148;
  • regulations, 252;
  • importance of, 112-113;
  • resistance to, 174;
  • trainings, 310-311
• Reno, Janet, 283
• retirement, 294-298
• Rickert, Tom, 225
• Riding Together, 157
• Roberts, Edward V., 75, 82, 84, 95, 108, 123, 154, 167, 210-212, 214, 215, 271, 309, 310
• Roberts, Julie, 192
• Robinson, Robbie, 124
• Robrahn, Reese, 169, 171
• Rockefeller Foundation, 267, 275
• Rolling Quads, 85
• Rosewater, Ann, 119
• Rowan, Gary, 74
• Rubens, Charlotte, 193, 200, 238, 296
• SAAT. See September Alliance for Accessible Transit
• Safan, Craig, 282, 283
• Safan, Linda, 282
• Sanders, Greg, 79, 80, 82, 83, 96, 98-100
• San Francisco Public Utilities Commission, 160
• Santos, Richard (Dick), 77, 97
• Savage, Liz, 258
• SCLC. See Southern Conference Leadership Council
• Scott, Suzanne, 83-84
• SDS. See Students for a Democratic Party
• Section 504. See Rehabilitation Act of 1973
• Segelken, Georgeanna, 200
• SEIU. See Service Employees International Union
• Seligman, Brad, 256-257, 282
• September Alliance for Accessible Transit, 220-231
• Service Employees International Union, 89, 125
• sexist attitudes, experience with, 27, 63-65
• sexual orientation, 64-65;
  • coming out, 70-71, 102;
  • lesbian life in Mexico, 105-106
• sexuality, disability and, in Nicaragua, 179-180
• Shalala, Donna, 316
• Shapiro, Joseph, 270
• Shapiro, Sigi, 142
• Shapiro, Susan, 35
• Shaw, Randy, 116
• Shea, Mary, 200
• Simon, Paul, 170
• Sklar, Richard, 160-161
• Slaughter, Arlene, 72
• Slonsky, Lorrie Beth, 176, 178, 192
• Smeal, Eleanor, 224
• SMC. See Student Mobilization Committee
• Smith, Joy, 178, 194
• Smith, Kathy, 136
• SNCC. See Student Non-violent Coordinating Committee
• Social Security Act, Title XX, 213
• Social Security/SSI, disincentives issues, 245, 316-317
• Socialist Workers Party, 48, 56, 61, 66-69, 73, 82, 102, 122, 152, 172, 298, 321
• Somoza, President Anastacio, 179, 180
• Souci, Connie, 119, 120, 136
• Southern Conference Leadership Council, 132
• Southeastern Community College v. Davis, 174
• Spaulding High School (Chicago), 31
• Springer, Ann, 58-61, 201, 290
• Springer, Elsie Mattis, 5-6, 17, 36, 45, 47-48, 71, 201, 288-290
• Springer, Georgia, 70, 290, 293, 302
• Springer, William Lee, 17
• Stanley, Debbie, 130, 131, 136, 139, 141, 143
• Starkloff, Colleen, 187
• Starkloff, Max J., 187
• sterilization, 183
• Stevenson, Sue, 274-275, 320
• Stratton, Marian Blackwell, 214, 246
• Streisand, Barbra, 282, 283.
  • See also Barbra Streisand Foundation
• Student Mobilization Committee, 61
• Student Non-violent Coordinating Committee, 132. See also Friends of SNCC
• Students for a Democratic Society, 44, 49-51, 61, 310
• substance abuse and disability right movement, 252-253
• Surface Transportation Act, 169
• SWP. See Socialist Workers Party
• Tanaka, Terri, 186
• "Tasks and Perspectives of the Disability Rights Movement," 270
• Taylor, Lynette, 136
• Thomas, Franklin, 267-268
• Torpey, Mike, 280
• Transbay Terminal, demonstration at, 163-166
• Transbus, 161-163, 229
• Transportation, U.S. Department of. See Department of Transportation, U.S.
• travel, Mexico, 103-107, 192-208, 234-236;
  • Nicaragua, 178-182;
  • South America, 59-61
• trust funds, 203-204
• United Cerebral Palsy, 76, 94
• University of California, Berkeley. See Physically Disabled Students' Program, UC Berkeley
• University of Illinois, Rehabilitation Program, 28-32, 298;
  • attitude toward disability and independence, 30, 33, 35;
  • compared to Berkeley, 81-82;
  • early history, 29-30
• Urban League, 268
• Urban Mass Transportation Administration, 161
• Uzeta, Raymond, 137
• Valliant, Anne, 200
• Vocational Rehabilitation. See California State Department of Rehabilitation
• Voting Rights Act, 270
• Wagner, Judy, 170
• Washington, Georgette, 164
• Washington Post, 115, 133, 138, 168
• Washington, Ron, 133, 136, 140, 164
• W.E.B. DuBois Club, 51-52
• Weeks, Ceci, 137
• Weicker, Lowell, 313
• Weinstein, Sylvia, 123, 126, 157, 165, 225
• Weissman, Jim, 169, 174
• West, Jane, 313
• Western Center on Law and Disability, 278
• wheelchair, 30;
  • first use, 24
• Wheelock, Jaime, 181
• White, Evan, 132-134, 142
• WID. See World Institute on Disability
• Williams, Cecil, 122, 123, 126, 198, 201, 224, 228, 321
• Williams, Harrison, 141- 145, 147, 197
• Wilson, Pete, 262
• Winter, Michael, 233, 234, 240, 279
• Wodatch, John, 144
• Wolf, Jerry, 80, 100
• World Institute on Disability, 82, 167, 210-220, 244, 253, 276, 310;
  • administrative problems, 212, 214-217
• Wright, Patrisha, 135, 170, 175;
  • Disability Rights Education and Defense Fund, 258-262, 270, 273, 274, 280, 286, 314, 319;
  • September Alliance for Accessible Transit, 225, 228
• Young Socialist Alliance, 52, 56-57, 61, 102
• YSA. See Young Socialist Alliance
• Zinn, Howard, 321
• Zukas, Hale, 75-76, 77-78, 80, 90-91, 94, 136, 145, 148, 156, 158, 173, 210, 211, 218, 223, 229;
  • impact on Kitty, 95, 96-98

CV: David Landes

Received a B.A. in Economics from Antioch College and an M.A. and Ph.D. from Washington University. He has taught economics in Bay Area state universities and community colleges since 1970. He currently teaches economics as adjunct faculty at Foothill College in Los Altos Hills and City College of San Francisco.

As a result of an auto accident, Dr. Landes has been a quadriplegic since 1962. He became active in the disability rights movement in San Jose, California, in 1977. He subsequently worked in the Counseling Department at Berkeley's Center for Independent Living, 1979-81. He was active in the Disabled International Support Effort (DISE) 1980-89. With DISE he worked with disabled organizations in Nicaragua, El Salvador and Cuba as part of the effort to provide technical and material support.

Dr. Landes became interested in oral history while working with his mother on her memoirs. He has been an interviewer/editor with the Regional Oral History Office since 1996, conducting oral histories for the Disability Rights and Independent Living Movement oral history series.