Disability Rights and Independent Living Movement Oral History Project

Blind Services and Advocacy and the Independent Living Movement in Berkeley

  • Anita Baldwin
  •     Deputy Director and Head of Blind Services for the Center for Independent Living in Berkeley, 1980-1984
  • Donald Galloway
  •     The Independent Living Movement in Berkeley and Colorado: Blind Advocacy and Minority Inclusion
  • David Konkel
  •     First Blind Services Coordinator at the Physically Disabled Students' Program, UC Berkeley, 1970; Founding Member of the Center for Independent Living in Berkeley

Interviews conducted by
Sharon Bonney and
Fred Pelka
in 2000, 2001, and 2002

Regional Oral History Office
The Bancroft Library
University of California, Berkeley
Copyright © 2004 by The Regents of the University of California

Acknowledgements

The Disability Rights and Independent Living Movement Oral History Series was funded primarily by a three-year field-initiated research grant awarded in 2000 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, Dr. Henry Bruyn, June A. Cheit, Claire Louise Englander, and the Sol Waxman and Tina P. Waxman Family Foundation.

Series History

by Ann Lage

Disability Rights and Independent Living Movement Oral History Project

Historical Framework

The latter half of the twentieth century witnessed a revolutionary shift in the worldview and legal status of people with disabilities. In major cities across the United States, people with disabilities began in the 1960s and 1970s to assert their rights to autonomy and self-determination and to reject the prejudices and practices that kept them stigmatized, isolated, and often confined to institutions or inaccessible homes under the care of family members.

Within a few years of each other, groups of people--usually young, often with a university connection, and frequently wheelchair users with significant physical disabilities--formed organizations in Berkeley, New York, Boston, Denver, St. Louis, Houston and elsewhere to foster independent living in the community and to advocate for laws and policies to remove barriers to autonomy. Characterizing these groups, which formed relatively independently of each other, was the evolution of a new core set of beliefs that gave a distinctive character to this emerging disability rights and independent living movement. Their members came to insist on self-determination and control over their organizations. They resolved to make changes in their own lives and in society. And as they engaged in political actions, they began to recognize the shared experience of discrimination and oppression among groups with diverse disabilities.

Very quickly, informal regional and national networks of activists developed, often including people with a range of disabilities, who shared information about the nuts and bolts of funding, peer counseling, and service delivery. They joined together to advocate for essential personal assistance services and for the removal of architectural and transportation barriers. These networks were formalized in national organizations, such as the American Coalition of Citizens with Disabilities (founded in 1975), and national gatherings, such as the 1977 White House Conference on Handicapped Individuals, which served in turn as catalysts for national and grassroots organizing on a cross-disability basis.

From the beginning, the movement was a part of the activist and countercultural climate of the times, evolving within the context of civil rights demonstrations, antiwar protests, and the emerging women's and gay rights movements. Early leaders such as Judith Heumann, Fred Fay, Ed Roberts, Lex Frieden, and a host of others conceptualized their issues as a political movement, a struggle for the civil rights of people with disabilities. A wide-ranging group of activists absorbed this civil rights consciousness and cross-disability awareness during a series of defining political actions, such as the nationwide sit-ins and demonstrations in 1977, organized to demand the issuance of regulations for section 504 of the Rehabilitation Act, and during the subsequent peer trainings on the rights of people with disabilities, which were carried out nationwide.

As the political movement grew, the new cadre of activists made connections with the emerging parents' movement and its efforts to free people with developmental disabilities from the massive and dehumanizing state institutions of the time. A series of landmark federal lawsuits, most notably PARC v. Pennsylvania (1972) and Mills v. Board of Education (1972), established for the first time a right to a public school education for children with disabilities. Alliances and coalitions also developed with a number of traditional, disability-specific organizations, which were themselves undergoing changes during this period.

New organizations devoted to pursuing legal and legislative reforms, such as the Disability Rights Education and Defense Fund (1979), ADAPT, a grassroots direct-action organization (1983), and a growing number of other local, state, and national disability organizations and alliances, profoundly influenced national policy in education, transportation, employment, and social services. Their best known legislative victory was the passage of the Americans with Disabilities Act in 1990, which, although compromised by subsequent court decisions, offered broad civil rights protection for disabled Americans and has served as a beacon for the creation of disability rights legislation in fifty other countries.

Less concrete than the legislative accomplishments and legal cases, and still evolving, is the shift in attitudes and consciousness that was driven by, and has transformed the lives of, people with a wide variety of physical and mental disabilities, challenging the notion of disability as stigma and instead embracing disability as a normal facet of human diversity. Theoreticians and artists with disabilities play a prominent role in defining and communicating concepts of disability community and disability culture, and academicians are promoting disability as a category of cultural and historical analysis.

These achievements, as significant as they are, have not ended the discrimination or the prejudice. Indeed, the first years of the twenty-first century have seen several Supreme Court decisions which have limited the expected scope and effectiveness of disability rights law, and many disabled Americans remain economically and socially marginalized. While the need for change continues, the tremendous accomplishments of the disability rights and independent living movement cannot be denied. American society has been profoundly transformed, and any accurate account of the social and political landscape of the late twentieth century will acknowledge the contributions of disability rights and independent living activists.

Project Design, Interviewees

The Disability Rights and Independent Living Movement Project at the Regional Oral History Office, the Bancroft Library, UC Berkeley, preserves, through oral history interviews, the firsthand accounts of the activists who have made significant contributions to the origins and achievements of this movement. The Bancroft Library also collects, preserves, and provides access to the papers of organizations and individuals who have been a part of the struggles for disability rights and independent living. All of the oral history texts, finding aids to the archival records, and selections from the archival papers and images are available on the Internet, as part of the Online Archive of California, California Digital Library.

The first phase of the project, completed in 2000, documented the movement during its formative years in Berkeley, California. Berkeley was the site where the concept of independent living was most clearly articulated and institutional models developed, originally by and for students on the Berkeley campus and soon after in the community, with the founding of the nation's first independent living center in 1972. These organizations and their dynamic leaders, together with the activist tradition in the Bay Area and a disability-friendly climate, made Berkeley an important center of the disability movement and a natural focus for Phase I of the project.

During Phase I, Regional Oral History Office interviewers recorded forty-six oral histories with Berkeley leaders, many of whom have also been figures on the national scene. The Bancroft Library collected personal papers of interviewees and others in the disability community and archival records of key disability organizations, such as the Center for Independent Living, the World Institute on Disability, the Disability Rights Education and Defense Fund and the Center for Accessible Technology.

Phase II of the Disability Rights and Independent Living Movement Project (2000-2004) expanded the oral history research and the collection of archival material to document the growth of the movement nationwide. The project again focused on those leaders whose activism began in the 1960s and 1970s. The forty-seven Phase II interviewees include founders and organizers of disability rights groups and early independent living centers in New York, Boston, Chicago, Texas, and California. Of these, many have also been national leaders in the movement and founders of national organizations. Many in this group, like the Berkeley interviewees, were among those who helped to conceptualize disability rights as a political movement and shaped the programs and philosophy of independent living. Others have been key figures in the development of disability rights law and policy, as organizers, strategists, and lobbyists behind the scenes.

A number of interviewees have held positions in state and federal government agencies and commissions, helping formulate government law and policy on transportation access, social security and health benefits, and personal assistance, education, and rehabilitation services. Several have worked to free disabled people from institutions, and others reflect on their own experiences living in institutions. Some interviewees were deeply involved with the parents' movement.

The international disability movement is represented by Yoshihiko Kawauchi, a leading proponent of universal design and disability rights in Japan; many American activists interviewed for the project also have connections to the international movement. Two interviewees are pioneering artists with disabilities, who discuss their careers as artists and the relationship of art and advocacy. Several have taught disability studies at colleges and universities, contributing to the concept of disability as a category of analysis analogous in many ways to class, race, gender, and sexual orientation.

A series list of project interviews follows the transcripts in each printed volume. The project Web site (http://bancroft.berkeley.edu/collections/drilm/) offers the researcher four points of access to the collection: by geographic location, by organizational affiliation, by research themes addressed, and by name of interviewees. There is no claim to completeness in the collection; further interviews are planned pending additional funding for the project.

Interview Themes and Topics

An overarching research goal for both phases of the Disability Rights and Independent Living Movement Project was to explore and document how a broad group of people with disabilities, in key cities across the country, initiated and built this social movement, and how it evolved nationally, within the context of the social and political fabric of the times. Lines of inquiry include social/economic/political backgrounds of interviewees and family attitudes toward disability; experiences with medical and rehabilitation professionals and with educational systems; identity issues and personal life experiences; involvement in civil rights or other social movements of the era; and developing consciousness of disability as a civil rights issue.

Interviews record how people with disabilities built effective organizations, with information about leadership, organizational structure and style, organizational turning points, stumbling blocks, achievements, and failures. Challenges particular to the disability community are addressed; for example, leaders of independent living centers point out the difficulties of providing much-needed services to clients and answering to government funding agencies for their service mandate, while still maintaining the essential advocacy roots of the independent living movement.

Interviews explore the building of national alliances and coalitions, investigating networking among groups from different locales and among groups accustomed to aligning on the basis of a single disability. Indeed, the issue of inclusiveness within the movement--the nature and meaning, and sometimes tenuousness, of cross-disability alliances and the inclusion of newly recognized disabilities--is a complex and significant theme in many project interviews, and offers an area for future oral history research.

Interviews document the range of efforts--from protest demonstrations, to legislative lobbying, to litigation in state and federal courts--to influence disability law and policy, to embed disability rights into the canon of civil rights, and to alter and expand the very definition of disability. Several interviews also reflect on a recent philosophical shift of some movement thinkers, who draw on a human rights framework and acknowledge the disability community's need for social supports along with equality of opportunity and civil rights.

Also examined by many narrators are race, gender, and sexual identity issues: the role of women (large) and minorities (limited) in the movement; the development of programs for women and girls with disabilities; questions of sexuality and disability; and the disability movement's relationship over the years with the women's, gay and lesbian, and African-American civil rights movements. The involvement of able-bodied advocates, including parents of children with disabilities, is examined by many interviewees, both disabled and able-bodied, with telling accounts of often awkward and sometimes painful struggle over their place in the movement. (For instance, one organization toyed with the idea of granting able-bodied members only three-fifths of a vote.)

Another important theme running through these interviews is the question of equal access. This includes the impact of technological advances--from motorized wheelchairs in the early days of the movement to adaptive computer technologies more recently, all of which have profoundly extended opportunities for people with disabilities. And it includes the campaigns, legislation, and lobbying--on campuses, in communities, and in Congress--for removal of architectural barriers to people with disabilities, for access to public transportation, and for access to personal assistance services, all essential requirements for independent living.

Many interviewees reflect on the process of developing a disability identity and a sense of belonging to a disability community. Several explore the concept of disability culture and its expression in the arts and in media, and theoretical explorations of disability by scholars and educators. Interviewees who have pioneered the fields of disability scholarship, arts, and ethics point out the contributions of disability studies to the broader society in fostering new and more complex ways of thinking about the body, about normality, about crucial ethical issues relating to abortion, euthanasia, and physician-assisted suicide; and in contributing a unique disability perspective to scholarship in history, literature, and cultural studies.

Project Staff and Advisors

Since its inception the project has been collaborative, with staff members and advisors drawn from the disability community, from academia, and from the Bancroft Library and its Regional Oral History Office. The national advisory board for Phase II includes disability rights leaders Fred Fay, from Boston, and Lex Frieden, from Houston; scholars Frederick Collignon and Sue Schweik from UC Berkeley, Paul Longmore, historian from San Francisco State University, and Karen Hirsch, disability scholar from St. Louis.

Ann Lage directed the project for the Regional Oral History Office, providing years of experience in oral history and leadership for the interviewing team. Interviewers for the project had a unique set of qualifications, combining historical perspective, training and experience in oral history methods, personal experience with disability, and, frequently, activism and participation in disability organizations. Oral history interviews were conducted by 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, cofounder and former president of the Disability Rights Education and Defense Fund, policy consultant and lecturer on disability civil rights topics, and Henry Betts Award winner; Kathy Cowan, librarian for a public interest law firm; Esther Ehrlich, oral history interviewer and editor in the areas of disability arts and community history (who also took on myriad project management responsibilities); and Denise Sherer Jacobson, writer and educator on disability issues (The Question of David, A Disabled Mother's Journey through Adoption, Family, and Life, 1999). David Landes, former coordinator of student affairs for the Computer Technologies Program in Berkeley, took a less active role in Phase II when he was appointed to a full-time faculty position in economics. Susan O'Hara, former director of the Disabled Students' Program at UC Berkeley and the initiator of the original idea for this project, again served as consulting historian, occasional interviewer, and convenor of monthly project meetings.

Conducting interviews in Massachusetts and Washington DC was Fred Pelka, a writer specializing in disability rights politics and history, author of The ABC-CLIO Companion to the Disability Rights Movement, and a recipient of a 2004 Guggenheim Fellowship for his proposed book, "An Oral History of the Disability Rights Movement." Harilyn Rousso, educator and consultant on issues of women and girls with disabilities, moved from project interviewee to interviewer, conducting one New York oral history and then organizing and moderating a videotaped group discussion with four New York advocates. The Regional Oral History Office production staff, coordinated by Megan Andres, transcribed interviews and carried out other production tasks.

Bancroft Library project personnel in the Technical Services unit collected, arranged, and catalogued personal papers and organizational records and prepared detailed finding aids. They included Jane Rosario, supervising archivist, and project archivists Susan Storch and Lori Hines, all under the supervision of David DeLorenzo, head of Bancroft Technical Services. The staff of the Berkeley Library's Digital Publishing Group, headed by Lynne Grigsby-Standfill, prepared the oral histories and other texts, photographs, and finding aids for digital archiving in the Online Archive of California. Brooke Dykman designed the Disability Rights and Independent Living Movement Web site. Theresa Salazar as curator of the Bancroft Collection, provided curatorial oversight for the project.

Oral History and the Oral History Process

Oral history provides unique and irreplaceable sources for historical study. It preserves the reflections and perspectives of those who have participated in historical events, documenting with firsthand accounts how events happened, how decisions were made, and the behind-the-scenes interplay that underlies the public face of an organization or social movement. Beyond documenting what happened and how, the words of participants reveal the personal and social contexts and the institutional and political constraints which profoundly shape events but may not be apparent in the written record. Most significantly for this project, oral histories offer an opportunity to elicit reflections on often elusive matters of identity, changes in perception and consciousness, and the personal experience of living with a disability. Finally, they provide a record of how people remember and understand their past, often a indication of personal values and cultural meanings.

The DRILM project team, primarily based in Berkeley, all contributed to the original design of the project and assisted in developing interview protocols. Bay Area interviewers were joined by Fred Pelka from Massachusetts for a two-day orientation session in December 2000 and by telephone during regular monthly meetings, held to plan and evaluate interviews and review progress. Interviewers assigned to document the movement in a particular location conducted research to choose potential interviewees and interview topics. Once narrators were selected and arrangements made, they prepared a preliminary outline before each interview session, based on interview protocols, background research in relevant papers, consultation with the interviewee's colleagues, and mutual planning with the interviewee. The length of each oral history varied according to the length and complexity of the narrator's involvement in the movement, but also was dictated by scheduling and availability limitations.

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 to give additional information when needed, but to preserve the transcript as much as possible as a faithful record of the interview session. The final stage added subject headings, a table of contents, and an index (for the print versions). Shorter transcripts were bound with related interviews into volumes; longer transcripts constitute individual memoirs. Interviewees were offered the opportunity to seal sensitive portions of their transcripts, or omit them from the Internet versions.

There are nearly one hundred oral histories in the Disability Rights and Independent Living Movement series. Nearly all of them are available via the Internet in the Online Archive of California (http://www.oac.cdlib.org/texts/); they also can be accessed through the project Web site at http://bancroft.berkeley.edu/collections/drilm/

Print 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 organizations and individuals for cost of printing and binding. Many of the oral histories are supplemented by a videotaped interview session. Video and audiotapes are available at the Bancroft Library.

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 Richard Cándida Smith 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://bancroft.berkeley.edu/ROHO/.

The Bancroft Library's Disability Rights and Independent Living Movement Project, of which these oral histories are a part, was funded by field-initiated research grants in 1996 and 2000 from the National Institute on Disability and Rehabilitation Research [NIDRR], Office of Special Education and Rehabilitative Services, U.S. Department of Education. 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 effort over the years: Dr. Henry Bruyn, June A. Cheit, Claire Louise Englander, Raymond Lifchez, Judith Stronach, the Prytanean Society, and the Sol Waxman and Tina P. Waxman Family Foundation.

Ann Lage, Project Director
Regional Oral History Office
The Bancroft Library
University of California
Berkeley
April 2004

Disability Rights and Independent Living Movement Oral History Project

Anita Baldwin

Deputy Director and Head of Blind Services for the Center for Independent Living in Berkeley, 1980-1984

Interview conducted by Sharon Bonney in 2000

Regional Oral History Office
The Bancroft Library
University of California, Berkeley
Copyright © 2004 by The Regents of the University of California

Foreword

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.

Copyright and Use Restrictions

All uses of this manuscript are covered by a legal agreement between The Regents of the University of California and Anita Baldwin, dated March 21, 2000. 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, The Bancroft Library, Mail Code 6000, University of California, Berkeley, 94720-6000, and should include identification of the specific passages to be quoted, anticipated use of the passages, and identification of the user.

Citation

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

Anita Baldwin, Deputy Director and Head of Blind Services for the Center for Independent Living in Berkeley, 1980-1984, an oral history conducted by Sharon Bonney in 2000, in Blind Service and Advocacy and the Independent Living Movement in Berkeley, Regional Oral History Office, The Bancroft Library, University of California, Berkeley, 2004.

Tape Guide

  • Interview 1: March 21, 2000
    • Tape 1, Side A 7
    • Tape 1, Side B 16
    • Tape 2, Side A 24
  • Interview 2: March 24, 2000
    • Tape 3, Side A 28
    • Tape 3, Side B 36
    • Tape 4, Side A 44

Interview History--Anita Baldwin

Anita Baldwin, born in Kansas in 1950, grew up in a small town as a child with a progressively worsening vision problem. Her disability shaped her future and her identity. She became a leader in the disability movement, an administrator at the Center for Independent Living in Berkeley, a program manager at the World Institute on Disability, and the executive director of the Rose Resnick Lighthouse for the Blind.

Like most children with disabilities growing up in the 1950s and 1960s, Anita Baldwin did not receive academic accommodations in high school even though she was unable to read the writing on the blackboard in class or her textbooks at home. She talks about her strategies for completing school assignments, how she did most of her high school work from memory and took tests by random selection of a, b, c, d. In college, she received financial help from Vocational Rehabilitation and received a Selectric typewriter and a reel-to-reel tape recorder her last two years.

At college in Kansas and Oklahoma, Ms. Baldwin attended demonstrations against the Vietnam war and was greatly influenced by the civil rights movement and by strong women role models. She changed her academic focus from math and computers to social work and public policy.

Ms. Baldwin arrived in the San Francisco Bay Area in 1978 and took a job in the blind services department at the Center for Independent Living [CIL] in Berkeley in 1980. Her story is rich in descriptions of CIL and the internal turmoil and dedication she found there. She talks about her interview with Michael Winter and others; about the staff strike and the underlying causes; about the chaotic and "magical" workplace that it was; and about the problems faced by CIL as a result of a drastically shrinking budget.

She moved to the World Institute on Disability in 1984 and talks about the visions of and relationships between WID cofounders Ed Roberts, Judy Heumann, and Joan Leon. She worked with the City of San Francisco and WID for three years before leaving to administer the independent living center in Pleasant Hill, California. Ultimately, she took the job of executive director of the Rose Resnick Lighthouse for the Blind in San Francisco, which she continues to direct.

The interviews were held on March 21 and March 24, 2000, in Ms. Baldwin's office at the Lighthouse in San Francisco. The transcript was lightly edited by the editor and then by Ms. Baldwin. Although she changed her last name to Aaron after the interview was completed, she preferred to retain Baldwin for this transcript.

Sharon Bonney
Interviewer/editor
February, 2004

Emeryville, California


7

I. Life with a Visual Disability, Lack of Accommodation in Schools, and Influence of Antiwar and Women's Movements

Onset of visual disability as a child


[Interview 1: March 21, 2000] [Tape 1, Side A]
A guide to the tapes follows the table of contents. Bonney

This is an interview with Anita Baldwin at the Lighthouse for the Blind in San Francisco in Anita's office.

Anita, let's start by talking a little bit about your early background. Tell me where and when you were born and a little bit about your family.


Baldwin

My birthdate is November 22, 1950. I was born in Winfield, Kansas, which is in the south-central part of Kansas almost at the Oklahoma border. Most of my extended family live in that general area. A few of us have moved--people of my generation or our children--away from that part of the country, but a lot of my parents' family still live close at hand there.


Bonney

Do you have brothers and sisters?


Baldwin

I do. I have a sister and a brother. My brother, who is ten years younger than me, actually lives with me right now, which has been very nice because I left home when he was eight years old to go to college. So I actually feel like I'm getting to know my brother as an adult for the first time, and it's a very nice thing. My sister lives in Germany and teaches school with the Department of Defense.


Bonney

What about your mom and dad? What did they do when you were--are they still alive?


Baldwin

Yes. They both are seventy this year. My father was a fireman and then an engineer for the Santa Fe Railroad. My mother was a homemaker and began taking on part-time odd


8
jobs to help supplement the income of the family. Then as we were beginning college, in order to be able to help with that, she began to work full-time outside the home in various jobs--clerking. She ended up in the last ten or fifteen years of her employment life working in the cafeteria at the local high school.


Bonney

Have you always been visually impaired?


Baldwin

No. I have a particular type of macular degeneration that's called Stargardt's Disease. The onset for me was around the age of nine or ten. It usually happens for people when they're children, but actually the onset can be as late as their early twenties. My onset actually came on fairly rapidly, the initial onset. I was in third grade, about to go into fourth grade.


Bonney

How did it manifest itself? What happened?


Baldwin

The first signs of it--because I was a tall child, in our school they sat you according to height, I always sat at the back of the room. I just have this memory in the third grade of looking up and not being able to see the chalkboard. I'm assuming I have that memory because I could see the chalkboard before. I just kind of have this freeze-frame in my mind of not being able to read it. From that point I started to notice more and more a loss of distance vision first and then more of my reading vision and color distinction and things like that, that all come along with macular degeneration being that it focuses on the center part of the eye and you lose the detailed vision that goes along with that. However, most people have said it wouldn't have changed that rapidly, most likely, so I cannot tell you why all at once I noticed this as opposed to having it seem gradually more difficult to do certain things.

It happened about the same time that there was an eclipse of the sun. The first eye doctor we went to actually diagnosed my vision loss as the result of my retinas having been burned as a result of looking at the eclipse of the sun. It was many years before the diagnosis was changed.


No accommodations in public schools in Kansas

Bonney

If you were in school and couldn't read the board, et cetera, how did you get through school?


Baldwin

I think it was an interesting combination. It depended on the individual teachers and how they chose to deal with the situation all the way through high school--through the rest of elementary, junior, and senior high school. So if there was a teacher who had some good ideas on how to accommodate my disability--of course, a phrase that I certainly had never heard at the time, nor had any of them--then I did well. But mostly what happened was I would memorize what I heard in the classroom because by the time I was in early junior high I was unable to read textbooks anymore. So there was a lot of memory. Many times on exams I would simply put an answer down--true, false, a-b-c-d--without being able to read the question being asked. So I guess I was also fairly lucky in my guessing, considering I kept being passed along from grade to grade [laughs].


9

It wasn't until high school that I stumbled upon a guidance counselor who really began to help me look at how he and I both could be proactive to get access to materials.


Bonney

Let me go back to this test-taking [laughter]. You literally couldn't read the questions and you just put down a, b, c, or d as a guess as to what the right answer was?


Baldwin

Yes. If it was an essay question I could write large enough to read my own writing back. If it was an essay question many times an instructor would tell me what the essay question was and I would respond to it. I could do quite well in those areas. But if it was a true/false test, many times I would simply arbitrarily go down the page going true, false, true, false.

I had two sets of experiences around that. Some instructors were very accommodating. They would either have me come and sit near them while they were giving the test and they would read me the questions and make sure I was filling it out correctly, or they would have me come after school and there would be an aide, some way I could take the test and take it on equal footing. Other teachers were exactly the opposite. I either filled it out or I couldn't take the test, and there was no continuity within the school district to give them support or backup or for me to work with in terms of what to do with it. I had no idea. There was no one else in our school district with a visual impairment. So there was no precedent for how to work things out.

The thing that amazes me most is that being unable to read the textbooks that I was able to gain so much through listening and being part of discussions. I'm probably more fortunate in that regard than whatever happened with the tests themselves.


Bonney

In high school then you got a guidance counselor who started working with you.


Baldwin

Right. He was one of the basketball coaches, and people kind of thought, "Oh, I see. They give him the job of guidance counselor so he can really focus on basketball," and yet he was the first person who said, "No, I think we can get some of this stuff in large print." He really decided to take this on and try to help problem-solve it, which I think may have surprised him and me and the entire district [laughs]. He was underestimated in what he would do for a student who needed assistance.


Bonney

What years are we talking? When were you in high school?


Baldwin

That would have been '66 through '68.


Bonney

You started high school in '66?


Baldwin

Yes. He did not intercede with my specific instructors until my junior and senior year, which would have been--those years, I'm giving you ending years, I just realized. So '67 and '68 would have been the end of my junior and senior years. It's been so long ago I don't remember [laughs] much about this, actually.

As he began to understand what I was dealing with--and I don't think I understood it either. I think that in my mind this was just what you had to do. If you couldn't have a conversation with a teacher about it then you just got along the best way you could. As he began to realize what I was doing then he was able to be my help.


10

There were also, I think, a lot of people within the school system who thought that because I could do some things unassisted that I was faking or I was using it as an excuse or whatever they wanted to think.


Bonney

So did you get large-print books in high school?


Baldwin

No. You couldn't get large-print textbooks. So what he set up was you could get the standardized achievement exams in large print, so when it came to the exams--the SAT and different types of testing--he could get those in large print. Also by that time they had removed the time limits if you used the large print copy. So there were those two accommodations. As far as the classes themselves, I had to work out other options. Sometimes it was having a fellow student work with me after class and read through the materials. Sometimes it was the instructor themselves. But frankly there were a lot of times that I just didn't read all the information that was there.

One of the interesting stories that my brother remembers, actually, is that I taught him to read numbers when he was three years old, I think, so that he could read me the exponents in the algebra book. At that time I could read the regular size numbers but I couldn't read the exponents [chuckles]. I have a memory of him, three years old, running around the kitchen table playing cowboy and I would put my finger on the exponent, and as he ran by he would look over his shoulder and go, "Three!", and then he'd run around [laughter] again while I did that problem.


Bonney

Accommodation comes in really interesting ways, doesn't it?


Baldwin

Yes [laughter].


Bonney

In some material that you gave me earlier, you commented that you were passed along from grade to grade. You kind of said that just now. What do you think about the quality of the education that you got? Has it kept you in good stead?


Baldwin

I really think I was poorly educated. I think much of it had to do with--to me, education is reading and thinking. If you remove the ability to read from that equation, it's just a major hole in your education, but also in what you've been exposed to in terms of life and thought about life. I think that in that school system at that time they did what they could do based on what they knew. But I think for me, even through the first couple of years of college, I lost much ground by not being able to just go and read even basic assignments. But then I'm the type of person that I would read one thing and that would lead to wanting to read something else. The interesting thing is obviously the Library of Congress had been doing books on flexible disc and, by the sixties, cassette tape. This had been happening for many years and yet no one put that together for me. I didn't know that that existed until I graduated high school.


College education and graduation from University of Tulsa, 1974

Bonney

Where did you go to college?



11
Baldwin

I went for the first two years to a local junior college in a town about thirty miles from where I had been living and going to high school. That was probably the good choice for me because it was more like a high school extension than a university. I was able to have more of a one-on-one relationship with instructors so I could go in and explain what I could see and what I could not see. But frankly I tried to come up with classes that didn't require a lot of reading. Instead of going with what I wanted to do, I went with what I thought I'd be able to access. So in many ways I took classes that filled a category on the transcript that didn't have to do with things I was interested in.

In my third year I went to a teachers' college in Kansas: Emporia State Teachers' College, which is now something else. Ultimately I graduated from the University of Tulsa.


Bonney

You went to the junior college from '68 to '70?


Baldwin

Yes.


Bonney

And then Emporia State for how long?


Baldwin

About a year and a half or so.


Bonney

'70 or '71?


Baldwin

Yes. When I went to the University of Tulsa I only went to school part-time, so I actually graduated in '74.


Bonney

Why were you part-time?


Baldwin

I got married in 1972 and was working, which is how I ended up at the University of Tulsa. I met my husband and we got married and his job was in Tulsa, and so I relocated there. I worked and then went to school part-time because I was working. It took me another two and a half years to finish out. I also changed majors at that time.


Bonney

What were you majoring in and what did you go to?


Baldwin

When I left the teachers' college in Emporia, Kansas, I was majoring in mathematics and computer science. I was just in the introductory stages and was beginning to realize someone with a visual impairment couldn't graduate in computer science in the early seventies. There was nothing accessible about it. I loved math and had a good aptitude for it and was very interested in computers and how the whole system worked, but they didn't talk then [laughs]. I began to realize how limited that field would be to me at that point. When I transferred to the University of Tulsa I began to look at where my interests were and what I could do to end up with a degree that was more in tune with my interests, and I changed my major to social work--sociology--which is a sign of having gone to school in the early seventies [laughs].


Bonney

Did Voc Rehab ever assist you through school?


Baldwin

When I graduated from high school this guidance counselor that I mentioned, when he had first applied for the large-print standardized tests, there was apparently a trigger


12
mechanism that then sent my name to the Department of Rehabilitation in the state of Kansas--or maybe that's where he had to apply for the exams too, I'm not sure.

I had a counselor actually contact me, who worked with the Department of Rehabilitation out of Wichita, Kansas. He came down to my house and did a series of testing in order to make it possible for me to receive financial assistance in going to college. So the rehab counselor came down and did this. I had to memorize strings of numbers forward and backwards and repeat them back to him--you know, it was one of those types of tests [chuckles].

What it turned into was that they paid my tuition through college but not until my junior year did they give me any equipment or assistance in that regard. At the time they were giving out reel-to-reel tapecorders and Selectric typewriters [laughs]. Those were the two pieces of equipment that I received. I'll never forget wondering how I was supposed to take this reel-to-reel tape recorder that could barely be lifted off the table [laughs]. Nowhere along the way did anybody talk with me about learning Braille, about mobility training--none of that.


Bonney

Why wouldn't they give you any equipment the first two years?


Baldwin

I'm not sure. My sense about it is that it had to do with my family and I not understanding what might be available, and that you had to push for it, and that in a change of counselors or whatever that someone else was more into saying "Here's what we can give you. Here's how we can assist you. We can buy your books. We can give you a living allowance. We can do these things."

Part of it had to do with when I transferred from the junior college where there were no disability student programs--when I went to Emporia State Teachers' College it was, at that time, in Kansas one of the more wheelchair-accessible campuses in the state, so a lot of disabled veterans were attending there, because now we're talking about '70 and '71. Therefore they had a very active disabled student's program. I think they were just more able to deal with students and what services were available, what rights students had, and I think that was the difference.

By that time when I transferred to the University of Tulsa again there was more of a disabled student's program in place. So I was just kind of coming in on the cusp of all that.


Bonney

So in the course of your college career did you ever get readers?


Baldwin

Yes. By the time I got to the University of Tulsa I was becoming an old pro at finding readers [chuckles].


Bonney

Did you pay for that or VR pay for them?


Baldwin

The department paid for them, but you had to find them. So what generally would happen is that you'd find someone in your class that already had to read the stuff anyway and pay them to read it aloud, and usually in front of the reel-to-reel tape recorder so that there was some sort of ability to access it later. As you can imagine, trying to skim a reel-to-reel tape to find high points when you're trying to study for an exam was difficult. So what I would try to do is also pay students both as readers and as tutors. At the time, the Department of


13

Rehab would reimburse a dollar an hour for readers and two dollars an hour for tutors. So once students found that out they were more willing to sit down and kind of study with me and get me prepared for exams because you could get two dollars an hour and justify that as being a tutor.

But yes, I had to find the people myself. I have some tapes I kept for a while and then I think in one of our moves I finally threw them away. It was a person who read to me when I was at the University of Tulsa and I was taking some psychology classes. She spelled as many words as she pronounced [laughs]. I would play that tape every now and then just to remind myself how difficult it could be.


Bonney

You mean she spelled because she couldn't--


Baldwin

She didn't know how to pronounce the words. She was the only person I could find, and she was willing--I mean, she would give me sometimes six hours of tape a week. She was wonderful in terms of the time she had available and her dedication to it. But the material was just so, so difficult for her because it was not where she came from, not what she was working on. That's a lot of what went on with readers: who you could find might not be at all qualified to read what you ask them to read.


Bonney

You mentioned that no one ever mentioned to you that you should learn Braille or anything. Did you ultimately learn Braille at some point?


Baldwin

Yes, I did. The beginning of learning Braille was actually when I began working with the Center for Independent Living in Berkeley, which would probably have been about 1980 or '81, when I wanted to somehow have more control over being able to access file folders and that kind of information. No one at CIL at that time used Braille, but I started out by putting staples in the corner of one file folder and a hole punch in another and something else on the other so I could differentiate them so that at least I could get the file folder out. And then if I needed somebody to read me the contents at least I could narrow it down to which file folder. Then I began to teach myself Grade One Braille so that I could label some of these things. I ran out of little tricks; I ran out of staples and hole punch ideas [laughter].

I taught myself the alphabet and how to number in Braille. When I came to work at the Lighthouse in 1990 there was Braille going on all around me. And the impetus to learn was just--you know, you had people to communicate with. There were reasons--there was ready access. We had Braille printers here. The receptionist was blind and she took notes in Braille, and therefore would give me my voice-mail messages in Braille--or my calls that came in from the switchboard. So there was a reason. There was information to be exchanged because of Braille. So for the last ten years I've become a dedicated Braille user.


Antiwar activities

Bonney

What did you do in college that was fun or different other than just studying?



14
Baldwin

I probably studied less than anything else I did in college [laughter]. In the early years of college, the junior college level, I think it was a lot of going out with friends. It was a small town, pretty much like high school, but you could drink because you were over eighteen. So a lot of just gathering and hanging out with other people. It was also the first time I was around people who were using drugs. So for me it was this whole--I had been fairly protected in the high school environment. It was a whole new thing for me to see what was going on.

There were a lot of things happening on a national level, particularly around the war in Vietnam, and civil rights having to do predominantly with African Americans. So slowly I became involved in study groups on political issues and spending a lot of time in discussions with people having to do with antiwar sentiment, that kind of thing. By the time I got to the University of Tulsa I was pretty heavily involved in political issues, and that's probably how I moved into more of a social work line of study than a math line. Computers weren't accessible to me, but also my political interests were more in the area of social work--and organizations, providing services to people or having political opinion.


Bonney

Were you involved in any of the antiwar demonstrations or movements in the area?


Baldwin

The demonstrations that I was involved in for the most part were peaceful. You gather on kind of almost on the rock-concert level of where people gathered around a cause and supported each other and the antiwar issues. A couple of times there were marches on the school administration buildings both at the Emporia State Teachers' College and the University of Tulsa. My involvement was fairly benign. I went through phases like hearing that the taxes on your phone bill were funding the war efforts and therefore thinking that we could all just stop paying the tax portion of our phone bill [laughs].


Bonney

Did you do that?


Baldwin

Yes. Thinking that would have some big--.


Bonney

Did anything happen?


Baldwin

They disconnected our phones [laughter]. My involvement at that level was more of being part of a support system where we all agreed. I think that when the veterans from Vietnam started coming home and coming to the campus with physical disabilities, it was almost my first awareness that there really was a war out there. These guys were coming back not just because they had been injured but because of what they had seen, feeling like this was a waste of human life--there was no reason for this war to go on. They sort of molded my feelings about the war, that sort of first-hand experience of, you know, having a boyfriend who would wake up in the middle of the night with nightmares of what he had experienced. That kind of molded my feelings about how could war ever be good? It was part of formulating my movement from the mathematics world to the social work world.



15

Influence of women's movement role models

Bonney

Did you ever work in social work?


Baldwin

Yes. I started out my internships at the University of Tulsa with the welfare department where I had a caseload. The professor at the University of Tulsa who dealt with the social work students was a person who had a master's in social work and she was a revolutionary in my eyes, too. She really helped open my mind to thinking about what were rights and what were freedoms, what people had a right to. She was a mom with two children and was raising them on her own because she had chosen to get out of a marriage that she thought was very confining. Just listening to her talk about where she was at was a major revelation in my life, to meet someone like her at the time that many of those other things were coming together too as well. She got me a placement with the welfare department. Nobody really wanted to have to take me on as an intern placement because of my vision loss. She knew who, of the people that she had used before in internships, was going to be the most open to providing a reasonable experience for me and she found that person and it worked very well.

They gave me a caseload all in one set of projects in Tulsa, Oklahoma, so that once I knew how to get there I was just within that complex. The people in the complex got to know me. It was a very positive experience in my life. You come on to the property and there would be these gangs of young adults--and the projects were predominantly black. There were very few whites or Hispanics in the projects at that time. So when I came in I stuck out like a sore thumb [laughter]. The people in the projects took care of me. They got to know who I was, they got to associate me with social work eligibility, and the guys who were hanging out on the basketball court would come and find out where I needed to go that day and deliver me to that apartment [laughter]. It was a very positive experience. I had very fond memories of that experience and of those folks and how we worked it out together.

I didn't use a cane at the time, and so there was a lot of--all of us figuring out who the other one was and what that meant. It was one of those very reaffirming opportunities and one of those times in my life when people were just fine people. The projects themselves were very crime ridden, and yet I never felt vulnerable there. I always felt very cared about and watched over by the residents.


Bonney

Let's talk a little bit about your professional background. You worked in an abortion clinic in Tulsa. Tell me a little bit about that.


Baldwin

Well, part of the experience with the professor that I mentioned--whose name is Marian Jackson--Marian was the only instructor at the University of Tulsa in social work. I didn't know anything about colleges and universities, and I didn't know that if you wanted to go into social work that you should pick a school that really focused on social work. I had no knowledge of this, so I enrolled in a series of classes, and unbeknownst to me Marian kept being my instructor because she was the only one [laughs]. After you've taken a series of classes with one instructor there's something really good that comes out of that for someone like me. I needed that kind of relationship--a woman older than me that had to make her own way in the world and who was very interested in focusing on what my


16
particular set of problems were. She really helped me identify things that I could do or challenged me on why I couldn't do them.



[Tape 1, Side B]
Baldwin

Marian became a personal friend. She took an interest in what I was going to be able to do with this career in social work, in the community of Tulsa, Oklahoma. The year was 1972, and that's when the Roe v. Wade opinion came down from the Supreme Court, which meant abortion was legal. The Planned Parenthood organization in Tulsa was actually very connected to the national movement, and Jackie Longacre, who was the director of that Planned Parenthood knew Marian Jackson very well and they were going to start an abortion clinic in Tulsa, Oklahoma, and they were looking for staff. They knew that it had to be staff that were pretty strong-minded because Tulsa is a conservative place.

Marian put me in touch with Jackie. Jackie said, "Well, we'd love to have you work with us and you can come through the training, but I don't know with your visual impairment whether you're going to be able to do this job or not." But they hired a clinic director whose name was Betty Bode, and Betty Bode said, "Oh yes, she'll do it because we'll make it possible for her to do it."

So I've had the fortune of having run into in my life some of the strongest-minded women that anybody could ever want to know [laughs], who in some ways were just as opinionated when they thought it wouldn't work. But there was always a woman on the other side who said, "I can make it work." I would just sit here and these women would decide what was going to happen in my life [laughter]. At the same time they were very able to see that it wasn't going to be too long before I was going to be sitting right there at the table with them in equal discussion [chuckles].

They started the abortion clinic and I was hired as one of the counselors. I feel like it was a very important part of my life, not only in me determining how I felt about abortion as a political issue, but also it was in Tulsa where the women's movement was happening. It was one of the central focuses of that movement. It was certainly a kickoff to how I defined myself in later years.


Discrimination in employment

Bonney

Did you experience discrimination along the way in hiring or in any of the jobs you had?


Baldwin

It's interesting: the answer is yes, in that I would turn in applications that I never heard anything about again. Obviously they were not interested in who I was once they found out I couldn't see. I didn't know what to do with myself, so I would go to job interviews and there would be this application that needed to be filled out and I would say, "I'm going to need to take this home with me because I can't see it to fill it out here, and I'll mail it back to you." What can you say when someone walks in and says that to you? So they would give over the application and I would take it home and either in conjunction with my husband or someone else would fill it out and send it back in, and I never heard anything.


17

The job with the abortion clinic came in another way, and that was because my social work professor knew the clinic director--you know, the contact was made on a more personal level and so what I found out was that if I could do this personally, if I could get a contact in, then that person was going to be more willing to entertain the possibility of hiring. So yes, I was discriminated against, and then I learned the way you got in the door was by who you knew, and who you knew would help you get in the door. And that's what I began to do.


Bonney

You also worked as a suicide crisis hotline coordinator. Was that part of the abortion clinic?


Baldwin

No, but the connection came as a result. The job in the abortion clinic was part-time. It was during clinic hours, and at that time the clinic ran Tuesday and Thursday afternoons and Saturdays. As I was graduating from college and wanting a job that was more full-time, again my social work professor hooked me up with people interviewing for the directorship of the suicide prevention service.

They interviewed me, and what I really think happened there was they were looking for someone--it was only a part-time job--with a college degree, with the experience in social work. But it was paying $6,000 a year for thirty hours a week. So a lot of people got ruled out just because they couldn't live on that even in 1972. I had another part-time job and I had a partner. So there were ways I could survive on less money. I don't think they wanted to hire me. I think they were concerned about whether I could do the job, but I think it came down to they didn't have a lot of choice [chuckles]. Who was going to be willing to take responsibility for a twenty-four-hour-a-day, seven-day-a-week service? [laughs] My social work professor kept saying, "She can do this. She'll figure it out. Just give her the job. She will figure it out. You won't have to worry about her disability; she worries about her disability." [laughs]

So it was kind of being in that little niche where you have a couple of people advocating for you and a situation where at that time in the employment realm I didn't have a lot of choice, and it kind of just clicked together.


Bonney

What years was it that you were at the hotline?


Baldwin

I think '74 through '77 or '78. I'd have to look at my own résumé from those days to know that [chuckles]. But those are roughly the years that I was there.


Graduate student at John F. Kennedy University, 1979

Bonney

At some point you left Tulsa.


Baldwin

Yes.


Bonney

When did you leave?


Baldwin

In 1978.



18
Bonney

Why did you leave?


Baldwin

In 1977 I gave birth to my daughter, and for the first time in my life I was not working full-time. After she was born I part-time worked with the abortion clinic but had let go of my more full-time job with the suicide prevention line. At the same time, my husband lost his job in Tulsa and began to look for a job in other places. He began to interview around the country. He got three job offers. One was in Springfield, Massachusetts, one was in Shreveport, Louisiana, and one was in San Francisco. We chose to come to the Bay Area. I was at a time in my life where my career was sort of secondary to his.

We came here and I went to graduate school here. It was probably the strong influence--of the three places I liked the thought of San Francisco, the Bay Area, more than the thought of Springfield, Massachusetts, or Shreveport, Louisiana.


Bonney

What graduate school did you go to?


Baldwin

John F. Kennedy University in Orinda. We moved to Concord--we had no idea about the Bay Area. The relocators associated with the job that he had taken kind of said, "Oh, you work in San Francisco and everybody kind of lives in Walnut Creek or Lafayette--in "CoCo County" [Contra Costa County], right? So we just kind of blindly listened to them and wound up in Concord.

The graduate school that I could find that sort of would work around his work schedule and the fact that we had a really small child, John F. Kennedy, again it was one of those unformed lucky choices for me because it really was a school that was very flexible around disability and around children. All those things worked to my advantage.


Bonney

You went there from '78--


Baldwin

Yes. I took a few classes. I never became a full-time graduate student. I was working it around being a mom and looking for work. Work has always been so much of my identity that it's very hard for me to just not work and go to school, or not work and be a parent.


Bonney

Did you graduate from JFK?


Baldwin

No, I didn't.


Bonney

What were you studying?


Baldwin

Clinical psychology. I think I used it as a focus point to relocate to the Bay Area, to find out through classes--meet people and the degree--the classes I took and some of the counseling work I did was certainly very important and I learned a lot from it. But as time went on I got focused with the disability movement and that's where my interests went.



19

II. Discovery of Disability Movement, Observations on Bay Area Disability Organizations

Interview with Center for Independent Living [CIL], 1980

Bonney

You say you became interested in the disability movement. Tell me how that happened.


Baldwin

I went to Kennedy in '79 and was taking classes in 1980 and at the same time was applying for jobs. By then I knew that what you do is you find out about what's going on with the Department of Rehabilitation and where the job leads were, and I started hooking up with every job developer in the Bay Area. I was certainly amazed at how service-rich it seemed to be here in comparison to Tulsa, Oklahoma.

One of the job developers that I met with was Jessica Weld at UC [University of California] Berkeley. I wasn't an alumni, I don't know why she--she had a disability herself which is why I assume she agreed to see me [chuckles]. She's looking through her list of placements and she said, "You need to go talk to CIL [Center for Independent Living]. They've got an opening in the blind services department, you've got background in some program coordination that they really need, and you just need to get yourself over there and talk to them." She just assured me that that's what I needed to do [laughter]. I believed her and I ran to them. It happened again despite the fact that there are people out there networking. I don't remember who referred me to her, whether it was the Department of Rehab or the fact that I went to other placement places who said I ought to talk to Jessica. But I wound up in her office and she sent me to CIL and I went there. And I got a job interview.


Bonney

So tell me what happened at CIL. Who interviewed you?


Baldwin

I was interviewed by the entire blind services department and Michael Winter, who was the deputy director at that time over blind services. Blind services at that time was housed under the stairway at CIL in this dark, little corner, which I thought was bizarre [laughter]. You didn't need light, did you? [laughter]


20

I came in and for the first half of the interview there were only three people. Then this voice comes from the back, and I realized there are more people in this room than I think [laughs].


Bonney

Who did you think was in there?


Baldwin

I thought that it was Michael Winter and two other people, and I don't remember which two at that time. There were really Michael and four people; I just couldn't see them. When I came in to the interview, Michael sort of comes out of this dark hole that was the blind services department and comes to get me, and I'm sitting up front by the receptionist. I follow him back there and he moves from his wheelchair to what as far as I could see was the only available seat in the room, and he sits in that seat. So I didn't know where to sit, and nobody provided me with any information. So I sat in Michael's wheelchair [laughs] because I didn't know what else to do.


Bonney

This was a test [laughs].


Baldwin

Well, it was a test--for Michael these things are unimportant [laughs].

We began to have this conversation, and when I realized that there were more people in the room--Gerald Baptiste being the voice from the dark, and there was another person sitting with him--we began to talk about things like--at one point I asked a question of why the blind services department was in such a dark place? Certainly those four people shared that--I had no idea that they were going to share; it was just me asking a question. We got into a discussion about Michael telling me it used to be upstairs in the attic because blind people were the only ones who could get up the stairs [laughs]. So we just got into this very hysterical conversation about how we're all trying to make this work, and we're all just stumbling through this.

The beauty about CIL at the time was there was some staff who thought, "Why wasn't the management solving this problem of why was blind services in the dark?" What I saw from that group of people was that they were willing to solve that for themselves if the management would move out of the way. I thought, "Ah, I get with these people."

So the interview itself let me know that it was a group of people that I could work with.


Bonney

Michael was the director at the time?


Baldwin

He was the deputy director, and blind services was one of the programs he directed and that he was responsible for. At that time, Phil Draper was the executive director. I don't remember, but I think Marilyn Thornton was already there as the administrative director. Judy [Heumann] was the senior deputy and Michael was, as he said, Judy's apprentice, working at the feet of Judy Heumann [laughs]. That's how he saw it.

It was a high time. I think people coming still out of the seventies--it was 1980 but it was really the seventies held over. CIL had a lot of money. They were trying to do a lot of progressive things but in a totally chaotic, unorganized way.


Bonney

What kind of progressive things?



21
Baldwin

One of the things that blind services was working on at the time was a grant from the San Francisco Foundation to look at access and what pressure points CIL could bring on services to the blind. They were looking at some of the same things that we're still dealing with twenty years later--the beginnings of "how do you provide access to people who are blind? What do older people who are losing their vision need?"

They were trying to look at small things like putting together a shopping service so that on Fridays there was a van and a driver available, and that driver would take a group of blind people shopping--grocery shopping, for the most part. They would help them select things, go through the grocery store, read the labels--the precursor to what the grocery stores needed to provide themselves, but the first step was CIL providing it.

Other things that program did was put together services at a senior center, North Berkeley Senior Center, for people that were blind--if they don't have access to the services provided in the senior center itself, at least provide services at the senior center in separate but equal space [chuckles].


Bonney

Now what was your role? You were hired as the director of blind services?


Baldwin

Yes, I was. As one of the staff of that department said, I was immediately pulled into the bigger picture of CIL politics. So it was not long before Michael left and went to Hawaii and became director of the Hawaii Independent Living Center. CIL had no money at the time, so what they did was interview me and sort of pull me into being the deputy director while also directing blind services [chuckles]. Blind services probably was not given a fair shake by me or CIL once that transition happened. I got certainly pulled away into the bigger picture of politics within the organization--than just blind services. It was at a time when Phil was not able to come into the office. He was working from home because of his own physical situation. It was very attractive, very alluring to be a part of what Judy Heumann and Ed Roberts and some of those folks were doing as opposed to staying at home and coordinating this little blind services department. It was very alluring to do that.


Bonney

So you were the deputy director under Phil Draper.


Baldwin

Right.


Bonney

And this was about '81 to--


Baldwin

Yes, from '81 to early '84.


Chaotic atmosphere at CIL

Bonney

You used two words: CIL was "chaotic" and "broke" [laughter].


Baldwin

Which I'm certain you've heard before in your discussions with people [laughter].


Bonney

Tell me why it was chaotic. What were the reasons for that?



22
Baldwin

I can presume the reasons. I think that in the seventies there was a lot of money available--well, more money available than there had been earlier--to disability organizations. CIL was mecca. It seemed magical. CIL would write a grant and the grant would get funded. So when I came in '80 there were just all these services being provided by CIL. But there was no general ledger, for example [laughs]. So there were thirty-three funding sources but the way that they were accounted for was, you know, receipts in shoe boxes, almost. CIL grew faster than its infrastructure could account for it. We were all working hard at trying to do what we thought needed to be done, but there was no central spine of the organization to pull it all back together. The agency sort of outgrew its accountability.

At the same time, you're in Berkeley where there's a lot of focus on civil rights. In my way of looking at it there was a clash between the civil rights/disability rights and the labor movement in Berkeley. Nobody quite knew how to make all that work. You had some services at CIL--van modification, wheelchair repair, transportation--that were predominantly staffed by nondisabled people and who were very much part of a civil rights movement, kind of an antiwar group, kind of growing out of all that. Then you had another group of people that were the disability rights people--the Judy Heumanns, the Michael Winters, the Phil Drapers--who had not ever been necessarily part of that sort of people's rights, but were part of it because of the disability rights focus.

So it was two or three groups that came together in CIL and were there together but didn't necessarily have the same belief system as to what the most important thing was. Part of us felt like disability rights was the most important thing. Another part felt like people's rights in general were the most important. The managers at CIL working on disability rights were not attuned to what the worker needed. It all came together in a clash that ended up in a labor strike. I had been at CIL for seven or eight months when there was a labor strike and a picket line in front of the door. I was amazed that this group of people felt that the management at CIL was not addressing their concerns. It was one of those shocking things to me that these folks felt that their issues needed to be addressed and that CIL was not addressing them as an employer.


Bonney

Now what were their issues? You said workers' rights, but what do you mean by that?


Baldwin

The striking workers felt, from my perspective, that CIL was not sensitive to their issues as workers, that as the money dried up--there was all this money that CIL had, grants that ended, and there was no more money and there was no way to pay the van modification people and the wheelchair repair people and the transportation service people. But because CIL had no general ledger the money was gone before CIL knew it was gone. So some of the things that happened was no money to make payroll, and yet there were these people that were employees that needed to be paid. CIL had no mechanism for knowing that they didn't have any money. So you would have Michael and Phil Draper and Marilyn Thornton and the others of us that were brought into the administration to help figure this out. As soon as money came in the door from any source it would go back out in payroll. Grants would end, but no one at CIL knew the grants were over.

So they would keep the people on or they would keep paying--the money from a particular foundation for blind services programs would come in the door that was supposed to fund the blind services program, but that money would get used to make the next payroll because it was cash in the bank. Then when the time came to respond to a particular


23
foundation about how that money was used there was no reporting. Nobody knew how the money had gotten used because it came in the door and it was used to feed the people [chuckles], to make the payroll.

It was very difficult. So the disillusionment of employees who felt that--I think that people began to believe that the fact that there was no money was being used as a way to get rid of them--those folks who were outspoken and not necessarily part of the disability rights movement--when the truth was there was no money and there was chaos. There was no one accounting for the money. Chaos reigned, and the disability--you know, Judy went on going off and doing what she thought was important, which was being away from the organization a lot, but representing the organization and the disability rights movement in Washington.


Strike and picket line at CIL, 1980-1981

Baldwin

There was no one minding the farm. Phil was off because of pressure sores and stuff and couldn't work. When the strike happened, Marilyn, who had diabetes along with her CP [cerebral palsy], her diabetes went out of control. There were times when the highest ranking person in the organization was me [laughs]. There were those of us who crossed the picket line every day to try to hold the place together, which infuriated the picketers because they were trying to make a statement that nobody's listening to us. You can't just not pay people--you can't just lay people off, from their perspective, because there's no money. You can't do this. From the perspective of the managers, well, there's no money so we have no way to pay you. Therefore, we have to cut programs because there's no money to pay for it.

So it was one of those things where I think the people on the picket line felt that somehow, if they protested, the money would get reallocated as opposed to the fact that there just wasn't any money.


Bonney

Was it a matter of workers not believing management?


Baldwin

Absolutely. Feeling that if they protested and picketed, they could get the organization to become more responsive to the needs of those particular service areas. The reality was I don't think the management knew there was no money either in some ways. They were being told there's no money, but it was kind of like, "Well, we just need to find out where the money is," [laughs] more than that there is no money. It took some people like Kari Eels, who was brought in as the controller to really begin to try to figure out what money is here, what money CIL has. CIL didn't know what money it had. There was no money to support some of those programs, but it took a long time to come to terms with them.


Bonney

Was it just nondisabled people picketing?


Baldwin

No. It was one of those things where the majority--it's also a very confusing--it's one of those looking back at "Well, what did happen?" For the most part, there were more people with disabilities crossing the picket line than nondisabled people, and there were more


24
people on the picket line who were nondisabled than were disabled. But there were some of each on both sides.

Some of the things that were going on was that when the press would come to cover the picketing of the organization, you'd have people in wheelchairs that didn't normally use wheelchairs--for the purposes of the press. On the other hand, I could see that those were people whose disabilities were kind of hidden and probably did need to be in a wheelchair, because it was certainly much more stressful to be walking a picket line than sitting at your desk providing a service from CIL. So there were allegations that people who weren't really physically disabled were in wheelchairs when they thought it was going to get them attention. I think it was a little of that and a lot of trying to accommodate their own disabilities on that picket line. So I think it was some of each.

I crossed the picket line every day for six weeks, which I had never done before, and my father was part of the labor for the Santa Fe Railroad and he and I would have conversations about my feelings about whether I should be crossing that picket line or not. He would say to me, "Well, where do you think you're the most use? On the picket line or inside the organization?" I said, "Inside the organization." He said, "Well, I think you have to do what you have to do." So I crossed the picket line, and those people were my friends and my colleagues, and I would go inside an organization that kind of felt held hostage by the people who were picketing because that's where I really felt I needed to be. But I understood that I was crossing a line, that this was a demarcation line. The people who were protesting outside would have seen it a small victory had I not gone in.


Bonney

When you crossed the picket line--and you said at one point the highest ranking person in the office was you--what did you do?


Baldwin

[chuckles] What would happen is there was this strike going on, and no one in the management of CIL had any idea what to do about that. There was not an understanding of workers' rights and what people have a right to do. When the actual walkout happened, we--"we" being the management at CIL, and I think it was Phil Draper from home and Marilyn Thornton and I from the building itself, saying, "What do we do with this?" We were advised by an attorney, "You go tell those people they have to come back to work. They can't picket; they need to come back to work." So we wrote this memo and went out and handed it to the picket line saying, "If you don't come to work we're going to fire you."

So while we were doing that, Marilyn, Judy, Phil, and I were also from various points trying to find out what we really should be doing as managers. We stumbled onto Moe Orenstein, who was an attorney who could advise management on what our obligations and our rights were.



[Tape 2, Side A]
Bonney

When we left off you were just starting to talk about Moe Orenstein, who came in to offer management assistance. What did he do?


Baldwin

Moe was an attorney who worked on the management side of the house as opposed to the labor side of the house. I don't know how we were given his name, but we certainly hadn't been given--when people walk out of an organization to go on strike they have rights, and


25

I don't think Marilyn or Judy or Phil or I had any idea, having never been associated in that kind of a movement. We had always seen ourselves as the labor side of the house even though somehow we were managers in all of this. Moe told us that people had a right to strike and they had a right to be represented collectively even if there was not a labor union in the organization. We needed to rescind those memos that we had put out saying either to come back or be fired, because we didn't have a right to fire people that were striking. They had a right to strike under the law.

So for six weeks a certain percentage of the organization was on strike and a certain percentage of the organization went to work. The people who were crossing the picket line and coming to work had a right to do that, and the people on the picket line had a right to that. So it was an organization that was kind of split apart, and for the most part had not totally--as I said just a minute ago--they were mostly people with disabilities who were crossing the picket line, but some people with disabilities were not crossing the picket line, and a few nondisabled people were crossing the line and then the majority of the nondisabled people weren't. So it kind of fell in a very jagged way into two camps.

It was symptomatic of the fact that CIL had grown so quickly in the late seventies and the beginning of the eighties, but there had not been a management structure put in place to be able to handle all that. It kind of always reminded me of the Winchester House. The first time I ever saw the Winchester House, where little rooms had just been added on, but there was no real organization at its core. There was no real planning and analysis; it was just things happening as they could happen but with no overriding organization or principles for how that would happen.

About the time I came to CIL, they were experiencing some real financial problems where the money wasn't coming in to support the staff that they had hired. There was no way to pay the staff. What was leading towards the strike was that there was not enough money coming in the door to pay people for their work, so payrolls were late. You know, when you don't pay people [laughs], one of the major things that would be hard for people about it is not getting a paycheck. So when I was hired initially as the director of blind services I was hired in a full-time position, but the reality was there was no money in the bank so they couldn't make that. So they reduced people's time and salaries with what they thought that they would be able to pay. So what started out as a full-time job came in as a 60 percent-time job, but there was not enough money for that because the money was going out to pay for the salaries of the full-time people whose grants had ended. There was just nobody accounting for all that.

When we began to try to come to terms with how much money there was or wasn't and what funding was available, it was really a drastic difference between what we thought we could do and what we actually had money for. That whole process, I think it was the final straw for employees who had been wanting to be a part of creating this organization that was a cutting-edge organization but had way stepped over what it had the money to do.

The strike, I think, was sort of the split--the eruption, that things weren't happening in the way that everybody hoped it was going to. The dream was falling apart--that's how it felt. I think the CIL that was before the strike and after the strike was the organization trying to come to terms with the reality of what money it had as opposed to what it really wanted to be able to accomplish. Out of it came a much smaller organization without all the mini-departments that were there before, but with the same disability rights focus.


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I think the budget probably went from somewhere in the neighborhood of $3 million down to about a million in a really short amount of time and with no way to know that was happening and to plan for it and to restructure the organization to be able to function as a much smaller organization. There were well over 200 employees at one time, and that had to be pulled back down into an organization of what should have been less than thirty employees--sort of all at once.


Lack of infrastructure

Bonney

Now when this was going on Michael Winter had already left, is that correct?


Baldwin

Yes. Michael had left to go to Hawaii as the director of the independent living center there. It's my memory that he left in the late summer and that the actual labor strike happened in the fall and moving into the winter.


Bonney

The fall of which year?


Baldwin

Of '80 or '81--I don't remember for sure. All those things happened in whatever year that was [chuckles]. He left, the labor strike happened. Judy left not long after that and went to work at the Department of Rehab with Ed Roberts. Ed had left before all that as well, so it was all kind of happening in this time frame of '80 to '81.


Bonney

So essentially, and you said earlier, Judy was also gone doing a lot of the broader disability rights issues across the country. She traveled a lot. Michael was gone and Ed was gone, and Phil was home trying to manage from home. So it left you and Marilyn.


Baldwin

Marilyn went off on disability leave when the strike--I mean, none of us knew what to do. None of us had any--I think we had these managers who were really people with disabilities who were trying to run this organization without any experience or any management skills and no lay-in of staff to really run it. You had these workers who were really feeling like they were being stranded. They were stranded out there thinking that this management was--I think that what happened was that the labor organizing piece felt like, if they could somehow shock the management into realizing that they were out there and that they needed to be heard, that the management would somehow turn around and begin to listen to them.

But we didn't even know we were management [chuckles]. They didn't realize the level of what it takes to run an organization and didn't know how to restructure an organization that had no money in it and look at what they can support. How many people can we employ? What kinds of services can we provide? How do we remove ourselves? How do you really restructure your workforce? How do you reduce it when you go from a $3 million budget to a $1 million budget and you go from doing a whole lot of everything with lots of money from the Department of Labor and the Department of Education and other federal money to no federal money? It's gone. Nobody has been accounting for this, and nobody has been structuring this.


27

The layoffs would come because there was no money, and as a complete surprise to the people that were doing the work because nobody knew when the money was going to run out. It was an amazing process, when CIL began to come to terms with the fact that the money just wasn't coming in anymore and wasn't there, it just was an eruption. Nobody was expecting it, everybody was pointing their fingers at other people. I didn't even know what funding sources there were in the organization, what grants they had and what grants they didn't. There was nobody that could tell you that information. It was just an amazing thing.

So it created a lot of a sense of--from some perspectives--that a few of the leaders had come in and when times got tough they just fled to the four corners of the earth and left this organization as kind of holding the bag for itself. But that's really not what happened. Nobody knew. There was nobody that was really in charge of the funding and the allocation of funding. I suppose it happens in a lot of movements where the people who are the visionaries and are actually running the movements do not put in an infrastructure to manage it. In a way, I've seen it happen several times over. I think now, twenty years later, I'm sitting in an organization where I am so fiscally conservative [chuckles]. My colleagues will sometimes feel very restrained under the accountability that I require before we sign a check, and it comes from having learned the hard way what can go on in an organization if you don't do that.


Bonney

How did this six-week strike get resolved?


Baldwin

At one point [Congressman] Ron Dellums' office provided us with their staff to look at how we could arbitrate this. I think that the way it got resolved was people beginning to realize that there was no money. There wasn't this management at CIL that was trying to get rid of them--another certain element--by just cutting off the money supply; there really just wasn't any money. When Dellums' office got involved and helped both sides start to sort through this, it became clear to all of us that there just really was no money. This was not about anything other than that.

I think that in many ways the strike was about people trying to keep their jobs, and yet when they began to realize there really were no jobs there then the interest began to dissipate, and people began to look for other options, for things they could do.

There began to be a bunch of small spinoffs that came out of that. I think that CIL is at the hub of many organizations that--I don't know if people realize--all kind of started from that hub. DREDF [Disability Rights Education and Defense Fund] is a spinoff of CIL. The KIDS Project, the Computer Technologies Program--many programs would not have started but for the fact that CIL had that initial funding. So it all kind of spun off from there.

There was no wheelchair-accessible transportation service in Berkeley before CIL. That was the beginning of that. CIL provided it because nobody else did. There was no wheelchair repair, there was no van modification. All those had their starts at CIL and then when the money dried up other small businesses or other services popped up as a result. So it was the catalyst for all that to begin from. I guess it had to self-destruct, in a sense, for the community to pick up those services on their own and go from there.


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Then it went into another phase, of a much smaller--still a pretty chaotic [laughs] organization, but more manageable.


A "magical" period at CIL


[Interview 2: March 24, 2000] [Tape 3, Side A]
Bonney

We were talking about the big strike at CIL and what had happened around that. Before you talked about that you said something about how CIL had been growing very quickly and getting lots of grant money and all of that. You said that it was "magical"--your word--the way CIL got money. They would write a grant, they would get the money. Why was it magical? What did you mean?


Baldwin

Well, when I look back on it, it felt like it was in a magical period. I think that probably it was. It was such a new--it was still in the area of new, innovative areas. It was the early eighties and even though the idea of independent living had been around for a few years it was still a relatively new area. There were federal grants to be had and state and local money. Private foundations were really intrigued about this concept--words like "deinstitutionalization" were heavily tossed around in proposal writing. CIL was the leader. They were the first, they were really seen as the place that was cutting edge. If you were going to fund a place to look at issues around disability rights then it ought to be CIL you funded.

So it resulted in a budget that grew from, you know, in the early days when it was a couple of people in an apartment and $30,000 or $60,000 for a first grant to $3 million with basically no infrastructure to support that amount of money. It takes a lot of accounting time to account for that kind of money. I'm just now figuring that out twenty years later [laughs] how much accounting time it can take.

I think that the focus for CIL was the more money they had, the more advocacy and the more services you could provide. Every penny spent on administrative things felt somehow like the community was not getting its due. So it was very difficult for the leaders to make decisions to put money into accounting and personnel policies and those kinds of things. It was almost as if to do that was to become part of the establishment which is--the whole premise of CIL was sort of antiestablishment.


Bonney

What kinds of things did they get money for?


Baldwin

They had core services because by that time there was a piece of state legislation referred to as AB [Assembly Bill] 204 that had been initiated--Tom Bates, who was the assemblyman from the Berkeley district had led the fight to get it at the state level. That money funded core services, and those core services were information and referral, attendant referral, housing referral, counseling and advocacy. Within those five, as you can imagine, you could define those in a lot of ways to encompass a lot of services. But that was the core state money.


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In addition to that they had a large federal grant doing deinstitutionalization work, and what it was about was anything that you could basically justify as removing somebody from a restrictive environment to a less restrictive environment. There was a ton of work to be done.

The moneys on these grants, I think, were very well spent in that the services end of things were provided very well. It was the accounting end that was the problem. The services themselves were provided by a group of people who were for the most part disabled themselves and very, very strong believers in what they were doing.

There was money for the Disability Law Resource Center that looked at development of legislation, doing 504 training, and just doing all sorts of advocacy types of things and counseling things. There was money for job development. There was money to set up a transportation service, a wheelchair-accessible van service. Probably much more, but that's what comes to mind at the moment.


Bonney

I want to follow up on one other thing that you said, and that was when the money crunch hit and the funding began to go away, and CIL had no accountability for how they could use the money, that it hadn't been kept track of very well, you mentioned that the San Francisco Foundation, for instance, would come to CIL and want an accounting of the money that had been given and CIL couldn't do that because they hadn't kept track of it. What did they tell people like the San Francisco Foundation?


Baldwin

Well, I think with the foundations, and particularly the San Francisco Foundation--it's maybe a unique example but a good one--the San Francisco Foundation was awfully supportive of CIL and seemed in many ways to understand that this was a growing pains type of situation. In fact, they came back after the strike and helped CIL develop a grant to just put some structures in place. I think that the foundation in and of itself was quite supportive. They helped us conduct a couple of trainings or workshops or whatever you want to call them with the board and staff to look at how things could work better now that they don't have all the federal money.


Trouble with the Internal Revenue Service

Baldwin

What happened was it was more the federal money--certain things started to happen such as you'd have the accounting people who were desperately trying to keep up with just paying the bills but had no understanding of an accounting system from a controller or director of finance perspective. They were accounting clerks, and they were trying to pay the bills. So if they didn't have money to pay the payroll taxes they just didn't pay the payroll taxes. There was nobody overseeing it that to not pay the payroll taxes was a major problem [chuckles].

The first problem they got into was with the IRS [Internal Revenue Service] because they were missing payments, the tax kind of stuff. To me that was a more significant issue for CIL than the labor strike. As the things they couldn't pay came due, what they really had to begin to do to make those payments was lay off staff, constrict the budget into the confines of what they had money for, and figure out a way to pay past debts. You can't pay


30
past debts out of restricted fundraising dollars such as from a foundation or from federal grants, that kind of stuff. About the only way you can pay past debts would be to do unrestricted direct-mail campaigns, that kind of thing, where the money comes in without being attached to some specific funding source. So the agency had to go through that tunnel that began with the labor strike but certainly didn't end with that.


Bonney

How did they pay back the IRS? What did they do? Did the IRS come and threaten to close them down?


Baldwin

Yes, they did. Basically they came in and said, "We'll put a lock on this door unless you can come up with a plan." So the organization and the IRS representatives sat down and worked out a plan of how CIL could pay the back payroll taxes. Part of that was where the San Francisco Foundation and a few institutions did step in and try to help work it out in terms of reallocating some of the funds to cover it.

The other thing that happened was that CIL sold part of the property that it was sitting in. In the old days the whole strip where CIL is currently located--there was the building CIL was in and there was a huge--it was a big parking lot. Now there's almost no parking and all of that's built up. They were able to get some revenue from selling off that piece and paying off debts with that.

What it showed to me was--and some of this happened after I left--we were going through a learning curve. There was a group of people that, as administrators, began to realize what needed to be done to keep the doors open and through trial and error went about doing that.


Public policy work

Bonney

I'm going to focus a little bit on you and your years at CIL. In your résumé you say that you administered programs and that you worked on public policy. What programs did you administer?


Baldwin

I started out there as the coordinator of the blind services program. Then after a few months, as they were trying to consolidate and eliminate some positions--particularly in the supervision level because that's where they felt that they had the--there was a goal to not lay off any more services staff than was absolutely required to get back within budget constraints. So the first thing they tried to do was lay off management. So they consolidated my blind services position with a deputy director position.

When I became the deputy director I became a supervisor of all the services programs except, as I recall, a counseling unit. It kind of happened slowly. It was an evolution, and when Michael Winter left to go to Hawaii then a few more programs came my way. It was kind of one of those things--by the time he came back I was supervising basically all the programs. I supervised I think about twenty or twenty-two individuals.

I mean, it was kind of chaos. You can't supervise twenty or twenty-two individuals [chuckles]. So basically we all did the best we could do within the structure.


31

One thing I can say about it for me was I really got to learn a lot about so many core services that there had been no way, had I worked in just one department or just one area, that I would never have been exposed to. So for me it was a marvelous experience. As far as just trying to make sure people got the kind of feedback that they wanted to be able to do their jobs, I'm sure people did not feel like they had particularly enough of my time, but, therefore, enough administrative support from CIL. There just was so many people.

The legislative work I did was whatever pieces--CIL was always looked to at that time when any sort of disability rights issue came up. So whatever the issue was, once Judy Heumann had moved on, then it became imperative that someone like myself represent the organization on these issues--primarily state and local. I didn't do a lot of national.


Bonney

What state issues? You mentioned public policy, and you also said that you gave testimony. But what did you work on?


Baldwin

For example, there was a piece of legislation about preexisting heart conditions and firefighters. This had come after people began to look at 504 and that the burden of proof around whether you had to provide reasonable accommodation or not fell onto the employer. The employer had to prove the disabled person could not do the job. What the state wanted was an exemption for firefighters, that there were some employees of the state government--that there should be some sort of preexisting barriers. Their example was firefighters and heart disease. If you had a firefighter who had heart disease there should not have to be the burden of proof on the employer; it should be a bona fide exemption.

It did exist in other areas, for example bus drivers and blindness. If you were blind you were automatically exempted from driving a bus. Nobody contested that. So it was an attempt to look at some other things and to impose restrictions--to sort of, I suppose, put disclaimers on reasonable accommodation. Some were successful, some were not. It just depended on what the issue was.

Also when CIL began working with the Employment Law Center it was about the time that DLRC [Disability Law Resource Center] was spinning off, so they were working on the issues too. In many ways it felt like the beginnings of more of a consortium rather than just being one agency--CIL--that there were a number of agencies in the Bay Area that could look at disability rights issues. Then I was one of those. Thank goodness, because I certainly didn't have the experience of an Ed Roberts or a Judy Heumann or a Michael Winter on these issues. It was nice to not end up representing the organization, so I was sort of out there by myself. Who knows what our laws would look like now if that had been the case [laughter]?


Bonney

What is the Employment Law Center?


Baldwin

I'm trying to remember if they were a part of the ACLU [American Civil Liberties Union] and were a spinoff, or if they were a part of--I don't remember. They still exist, and they are a part of--it's a nonprofit organization that looks at consumer legal issues. I don't remember if it's part of the Legal Aid Society. But they specialized, and still specialize, on disability-related issues and employment. Right now a lot of their focus is on mental disabilities and employment.


32

It's interesting because they were around long before either DREDF or Disability Rights Advocates [DRA]. Yet it seems to me that over time DREDF and Disability Rights Advocates actually have gotten more involved in some of those issues. I would assume that that's funding driven--whoever got the money.


Bonney

We talked about Ed Roberts and Judy Heumann and Marilyn Thornton and Michael Winter. Did you work with Joan Leon?


Baldwin

Only tangentially. By the time that I came to CIL in 1980, Joan was working with Ed as his assistant at the Department of Rehabilitation. I met her and we did certainly begin to get to know each other, but we did not work together directly.


Bonney

Why did you leave CIL?


Baldwin

For me, there was always such a sense of chaos in that there always seemed to be a lot of employee dissatisfaction, always seemed to be trying to do far more than what the funding would allow. There just seemed to be always this angst between management and staff, and since I was sort of new to the Bay Area and new to Berkeley when I took that job it didn't fit for who I was. It's very difficult to cross a picket line to go to work. It's very difficult to be typecast as "management" when I was thirty years old and just coming to do this great job for disability rights [chuckles]. It seemed like not a fit for me. I felt very much caught in the middle. I was kind of middle management, so therefore caught between what the board and the director felt was the right thing to do and what the staff wanted. It was very wearing. So it was time for me to go.


Bonney

But you stayed for about three years.


Baldwin

Yes.


Bonney

You didn't leave right at the end of the strike.


Baldwin

No. I think that in many ways it was one of the more exciting jobs I've ever had because along with all the stress came wonderful creativity and vision. It was very amazing for me--who was this person born in a small town in Kansas who never thought anything good could come of disability, that it was this shameful and embarrassing thing to have happen to you and you're always going to be the odd person out--to be a part of this movement and to work for an organization that was deemed as something almost mystical by the rest of the country, by the rest of the disability rights community. So for me it was one of those evolutionary things that I can look back on and say it was a very big punctuation mark in my life [chuckles]. Perhaps a colon, at least a semicolon [laughter].


Awareness of the disability movement

Bonney

When you were working at CIL did you realize that you were part of a movement?


Baldwin

It was one of those things that dawned on me as time went on. When I came to California in '79 I really can't say that I knew there was a movement. When I applied for the job at


33

CIL, I knew about rehab services, and I really thought that in a sense what I was going to be doing was in essence providing services. I liked the idea of the peer model. That appealed to me right away. I had worked with the women's movement in Tulsa, Oklahoma, so I was familiar and comfortable with peer organizations. It was slow to grow upon me that this was a civil rights movement that provided services. It was very empowering, and it seemed like absolutely the right way that something should happen, that the services fell out of a really strong belief system about people's rights.

I didn't know how significant CIL was looked at by the rest of the country until I went to some national meetings and found that simply by having CIL on my nametag I was given a sort of attention--I was looked to for answers when I didn't even know what the questions were [laughter] from other parts of the country. So it was one of those slow-going kinds of awarenesses.

Or that if you were in one of these national meetings and Judy Heumann took a stand on a topic like housing, it became the stand of the country on disability. This was the same woman, of course, that I had dinner with in the hospital cafeteria because it was the only place accessible and that my three-year-old daughter could play in. We talked about our love lives [laughter]. It was quite a shock to see that when we would get to this meeting in Chicago or someplace she was looked to as the person with the answers.

It was always so interesting what your slice of the world looks like and then just look at what other people--looking in on you, what they think.


Bonney

How has the movement changed you?


Baldwin

I think it was how I adjusted to having a disability. My time at CIL was the beginning of the acceptance of my own disability--which by that time I had had for twenty years--instead of simply coping with what I had been stuck with in terms of having a disability. I began to look at it from the perspective of I'd rather be disabled. I'm very clear that what I do now in my life I would not be doing but for the fact that I have a vision impairment. I grew up in a small town where I probably would have stayed, or stayed nearby. I don't know if I would have gone to college. There's so many things I don't know that when I look back on, I feel so much more connected to this small world in a way that we live in than I think I would have felt or had been connected to the larger world.

So at the same time I'm aware of all the discrimination that still goes on, and that job opportunities and all those things are still in some ways sort of limited as they were twenty or thirty years ago. My own place in it is that it gave me a real sense of acceptance and importance in the world.


Job at World Institute on Disability [WID], 1984-1987

Bonney

Now, when you left CIL, you went where?


Baldwin

To the World Institute on Disability [WID], in its infancy.



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Bonney

In '84?


Baldwin

Yes.


Bonney

That's when it started, wasn't it?


Baldwin

Yes.


Bonney

What did you do there? First of all, tell me how you got there.


Baldwin

Judy Heumann is an opportunist and [laughs] when she knew that I was leaving CIL she approached me and said that WID was trying to work out a contract with the Department of Social Services in San Francisco to look at reasonable accommodation and employment within that department. The way that contract was working was the head of that department at that time, Ed Sarsfield, was very impressed by the work Ed Roberts and Judy had done. He was actually looking at ways that not only he could support the work of--how do you help get a WID established and what money did he have to make that happen?--but the frustration with his own department within the city and how disability seemed to be this thing that nobody talked about. He was aware there was a large number of people on his staff with disabilities, but it was kind of like you just didn't talk about it. You didn't address head on how somebody with a disability could do their job more efficiently.

They came to me because a lot of what the contract was to entail was trainings for small groups of managers. Judy and Joan felt at that time that because I had done some testimony before the legislature, because I had supervised enough at CIL to kind of know what the ins and outs were about programs, that this might be a job that I could do. They were aware that I really was feeling a need to remove myself from CIL.

So at that point the organization was headquartered out of Judy's kitchen. I began work on a contract where I was in San Francisco and I had a desk and phones some of the time, and in Judy's kitchen other parts of the time [laughter]. That is how I began to get to know Joan Leon--at the WID experience.


Bonney

This Ed Sarsfield--did you say he worked for the Department of Social Services?


Baldwin

He was the general manager for the Department of Social Services for about eleven years, from the mid-seventies to the mid-eighties, as I recall.


Bonney

Was he disabled?


Baldwin

No.


Bonney

How did he come to this realization that--


Baldwin

He had people in his family, like many people do, with disabilities. I think his aunt was blind or something. But I think for Ed it was more that he was intrigued by new things. He was intrigued by things he didn't know about, and I really think Ed Roberts just really impressed Ed Sarsfield. When he heard Ed Roberts speak and then later met Judy--and this was just because Ed was the head of the Department of Rehabilitation at the state--


35
that Ed Sarsfield began to look at what his department--the Department of Social Services--could contribute. He began to look at his own budget and salary savings and what he had control over on a departmental level that could have impact on the whole issue of disability--a lot of it because so many of the clients at the Department of Social Services are people with disabilities. It was both levels: it was just seeing it all around him and thinking, "Gee, if I can help out WID and if they could help out us by looking at how we deal with employment of our staff--" it just felt to him like something that he could do.

He at the time also had a contract with a person who was brought in to look at affirmative action issues within the department even though the city and county of San Francisco certainly had staff in that regard. Ed wanted to pay attention to it in some particular ways, and he brought in an individual to do that. It was just kind of how he was. He was very flamboyant, very risk-taking. He stepped on the toes of--I think the mayor at the time was Dianne Feinstein. He had to step down because, I don't know, he was flying around the world and doing things that didn't seem to be relevant to the Department of Social Services [laughs].

What I believe he offered--once he said the contract money was there and he negotiated the contract, a lot of the work that I was allowed to do was actually with the Civil Service Commission and the broader city and county of San Francisco. So in a way he funded--because he had the money in his budget--the position, but what I really did was work on charter amendments. I did some things for the department, but many things that were really citywide in their impact.


Bonney

Now tell me what the charter amendment was.


Baldwin

The charter amendment was to set up a hiring program. Basically the premise was that people with disabilities were not being given equal advantage to get into city jobs, that there was implicit discrimination going on and maybe some that wasn't so implicit. Part of that was that the testing that was required was not always equally accessible, and that many of the jobs inherently had things in their job descriptions that discriminated with there being no need to.

In looking at how to remedy this, there was a temporary hire criterion much like the federal government had by that time where a supervisor could set aside certain entry-level positions within classifications, and disabled people could be brought into those positions without going through the testing process. You could hold that position for twelve or eighteen months, I don't remember, before testing needed to occur. So in essence they were trying to level the playing field by giving the person time to get in and determine how this job could be made accessible. It was sort of like, "Okay, we don't believe our testing is equitable. Let's give the person a temporary appointment for a period of time to be able to work in the job."

It was a win-win because at the time the city was having a terrible time finding employees. It was just one of those periods in the economy where they had a lot of job openings, they weren't getting qualified applicants, and this got people into the system more quickly. It was a good leverage to go to supervisors and say, "Well, I know you've had this position for a while. If you're willing to put it over here, this rule, whatever it was, we can probably try to get you someone very quickly because you can avoid all the testing and all the waiting period that civil service takes."


36

What happened behind the charter amendment was there needed to be training in many of the departments in the city. So it became--after writing it and working with the Commission on Disability here in the city and some of the other groups--once I wrote the core language I stepped back. I felt like I was a staff member. The disabled community and the civil service commission carried the legislation and got it approved. I just felt like it was my job to sort of get it out there. After that I did a lot of training with different management groups around the city in how to use it.


Bonney

What was the core language? What did the amendment say?


Baldwin

It's Rule 34, and it basically said that certain entry-level positions within certain classifications--and I'm using those words because they were then defined by each department; they weren't defined in the amendment--could be set aside and made available to qualified persons with disabilities without going through the testing process. That's probably so far from what the language actually turned out to be, but [laughs] it's what it meant.


Bonney

It's the amendment to what charter?


Baldwin

The San Francisco city and county charter. They have a charter that governs the city departments and the employees. So any change to the hiring process or to the benefits or to departmental structures, any of that, if it's been defined in the charter for the city and county--



[Tape 3, Side B]
Bonney

You were saying how it got voted on.


Baldwin

Yes. Sometimes depending on how explicit the charter itself is on certain issues, to amend it may have to be an actual citywide vote. Some could be modified by the civil service commission. This particular amendment was actually voted on at the citywide level but was part of a broader thing. I don't even know if most residents of San Francisco who voted would have realized that they voted on this piece or not. It was part of a much bigger reformatting of how hiring and retention and things like that were handled. It had a lot to do with affirmative action at the time.


Bonney

Is it still in effect?


Baldwin

Yes.


Bonney

It's something that lasted for nearly twenty years.


Baldwin

I'm not sure how utilized it is, which was always the problem. I think the federal government hiring policy has the same sort of inherent problem. A department like social services can set aside two eligibility worker positions that they want to set aside for people with disabilities. If no one is brought forward during the time that they need to fill those positions--that have the skills to do the job, the entry-level stuff--there can be a number of positions open, but there may be no applicants who are just in the right place and time to fill them. It was always this matchup situation that was the problem. So I don't know how much it's utilized now.


37

I do know that other things in the city of San Francisco work better for employment than they did twenty years ago. One of the other things we worked on was the whole issue about job accommodations. There was a period of time where if somebody needed a CCTV--a closed-circuit TV magnifier--to read paperwork or whatever, it could take six to eight months to work through the city system for that person to get the piece of equipment. There's a lot of streamlining that's been done about that.

Just recently, San Francisco has now a whole staff in the mayor's office that's focused on disability. It's just so incredible to think about being this one person in the Department of Social Services twenty years ago and now to see this staff of really competent people dealing with programs as well as services from the city as well as employees within the city system, that the whole issue is being dealt with by a really wonderful group of people.


Bonney

What years were you at WID?


Baldwin

From '84 through '87ish.


Bonney

What were the issues at WID at the time? What were they focusing on? What were they trying to do?


Baldwin

They certainly were in their start-up growth mode. After being in Judy's kitchen we moved to an old school administration in Berkeley on Oregon Street. In many ways it was a lot of small contracts wherever we could get them to be able to keep the concept of the organization going. There was some seed money, and I'm trying to remember if it was from the San Francisco Foundation. I think that there was some seed money from there. There was some money from AC Transit to look at some public transit and paratransit issues.

I don't think by that time that Ed Roberts had gotten the [John D. and Catherine T.] MacArthur Fellowship, but at one point that's part of how things were funded. He stepped off any salary at all when he got the MacArthur award, and for five years that's how he was paid. It was just pulling together things in any way that could be pulled together.

The national and international issues--at the time Judy was focusing a lot on the exchange of ideas with disabled people from other countries, a lot of think tank type of work. What does Sweden do versus Germany versus the U.S. versus Japan? From that, what did WID have to offer in all of that? What is it that WID knew that maybe the rest of the world could benefit from knowing, and vice-versa?

There were a few of us who worked on our very focused contracts, mine being within a city/county while others like Judy were international. It was an interesting combination. I was very aware that part of what I was doing was designing something that could be a potential model that could be replicated other places, that it was of that significance. On the other hand what I was doing was helping generate the overhead to be able to fund the dream. Both things were going on simultaneously.


Bonney

What was the concept of the organization?


Baldwin

That in bringing people with disabilities together on a level of analysis and interchange--that there needed to be discourse on what was going on within disability rights and among


38
people with disabilities. From that, programs and services could be generated to meet the need, and education could occur, and advocacy initiatives could be developed. I did see that happen for WID over time. After I left, looking back and seeing that they had funding to look at the personal services issue--attendant issues--and that kind of thing, those were the outgrowth of many, many discussions with people from all over the country and the world in terms of what kinds of services do we need and what kinds of rights do we have and how we make sure that the dialogue changes form from needs to rights. That is, to me, what the big picture was about: to get out from the burden of "we need this" or "we need that", but that we have a right to this or a right to that. If I was going to say what WID was about, I would probably boil it down to that. So it was changing the dialogue, it was changing the conversation.


WID leaders and their interactions

Bonney

What did you see Ed doing at WID?


Baldwin

I think Ed was the inspirational leader type. I used to laugh and say that if I hear that analogy one more time that "I'm invalid," because they use the word "invalid," or that "I'm a vegetable, well, I guess I do kind of look like an artichoke," [laughs]. It's these Ed analogies. On the one hand, because we all worked together you kind of rolled your eyes and go, "Ed!" Then you'd see him in a group and realize that people so desperately needed to hear this that it made you want to cry. People with disabilities all over this country and all over the world had no sense of connection and no sense of power. He would say these things and get cheers from the crowd. The reality that we're very fortunate--those of us who live in places like the Bay Area where in a sense it all kind of began are just ever so fortunate--that we got that sense of who we are while others are still needing it. Again, I traveled with him a few times to different places and was amazed each time at the reaction that people had to what he had to say.

Judy could also be quite charismatic, but Judy could also give a very practical speech. Practicality had nothing to do with what Ed talked about. He talked about big--like I said, a similar point made over and over again. He had a stump speech, as it were, and he delivered it very well. He knew that people needed to hear that. It was very interesting to watch, whereas I would probably not have been as aware of my audience. He said, "I chose to be a star. It's just what I've chosen to do. I could have just chosen to do nothing, but I'm going to be a star," and he did it very well [chuckles].


Bonney

How do you think Ed came to that point where he could give a stump speech and people would jump up and cheer and rally around?


Baldwin

How could he do that?


Bonney

How did he come to the realization that we needed an independent living movement?


Baldwin

Well, I think it's like all things that happen. It's like it just slowly evolves. I think that probably the biggest thing that Ed had going for him was Zona. I think that Ed's mother, Zona Roberts, just wasn't going to take it that her son was not going to have a life. But she


39
didn't do it in a Gloria Steinem mode. Zona just, from a mother's perspective, made sure that Ed had access to things. I think in Ed's case it takes a little bit of arrogance. He got to UC Berkeley and he saw all that was going on around him and he didn't want to be left out of it. He began to discover that it's not going to come to you; you have to create it. If you want to get out of your dorm room, if you want to get out of Cowell Hospital and out of your iron lung, you've got to have attendants to be able to do that. Therefore, I think his desire to just be out in the world prompted him to just take over the organization of his life as his mother had shown him how to do.

One of the most wonderful things I can remember--if you go back to the CIL strike for a moment--is that one day on the picket line I go by and this woman speaks to me and I realize it is Zona Roberts on the picket line [laughs]. She just had--and still has--that impetus as a part of society. She's part of life, and I think she just gave him that and he took it running. His comment that he used to say was he switched to an electric wheelchair when he was in college when he realized a manual wheelchair in no way could keep him up with his girlfriend. It was a very practical, "I'm going to be part of this world."

In many ways I see that as a difference in a lot of people. Maybe they made the decision when they were eighteen months old; I don't know where the mechanism for making the decision comes, but it seems to me the people who are most successful, who have disabilities, in sort of managing their lives are those people who have decided they want to be part of the bigger society.


Bonney

You spoke a little bit about what Judy was doing, traveling across the country and the world at this point. But what did you see her doing as part of WID? What was her role?


Baldwin

I really saw Judy as, at that time at least, the visionary. Judy's driven. She was driven by how much there was to do, how much could be done, and how much she wanted to be a part of that doing. I saw her as the glue, in a sense, and I realize that other people would probably have said exactly the opposite, that Judy was all over the place and always gone and "How could you view her as the glue?" But for me what she did made sense to me in terms of the guiding vision of the organization and her want to have there be a bigger connection of people with disabilities, that there be this way that we were all linked either in ideas or organizations or whatever, that that's where the power lay. The power was in the way we could also come together with our ideas and our energy.

I particularly have always enjoyed working with Judy. I've always felt like she could take a comment I made and turn it into a whole idea, or take an idea that I had and see the inherent flaws and I never felt criticized. It just always felt like it was a dialogue. I just appreciated the way she thought about things.

I didn't know much about where she came from for a long time. It was kind of like I stepped on the people mover one day with everybody else and had no idea of what had gone before me. For example, I didn't know that there had been a sit-in/sleep-in in federal buildings here [chuckles] until ten years after it happened because I came along in '79 and it was old news. Everybody was just marching forward. What I had thought Judy was able to do was pull WID forward to the next funding source, to the next area that funding could be gathered to gain what the goal of the organization was anyway.


Bonney

What was Joan Leon's role?



40
Baldwin

I think that Joan, in those early days, was doing some wonderful grant writing. I always felt that what Joan was so wonderful at doing was embracing what both Ed Roberts and Judy Heumann were and sort of working around and with them--acknowledged that Ed is an inspirational speaker, that that's who he is. Judy has so many ideas and so many visions that she's going to go ninety ways at once, and Joan tried to keep some threads together from all that, of grant writing around Judy's ideas--refocusing, getting things done. She was kind of the delivery person, to try to actually make good on these visions and promises that these two guys--I mean, by the time an idea actually came down the pike with funding Judy was ten miles ahead of that with fifty more ideas. It was kind of Joan that tried to make sure that the funding was actually carried out, that the phones rang [laughs]. At that time she did it with such style and grace.

I can remember being very offended by Joan one time because she rewrote a grant that I wrote, a reapplication for funding. I read it and I thought, "Well, that's just her personal preference. There's nothing wrong with what I wrote." We probably still think that about each other, but what I began to understand was how she saw it as her role to make sure that everything like that flowed through her and had the same kind of language to it and the same kind of--made it fit everything else. I had to learn to appreciate that.


Bonney

Judy and Ed and Joan were the founders of WID. They conceptualized it and founded it. How did the three of them interact, and how did they make decisions?


Baldwin

I think Ed and Judy did what they wanted to do and Joan tried to make it all work [laughs]. I say that--you can probably tell by my voice--with absolute affection and admiration. I think that neither Judy nor Ed were tameable. You were not going to tell them, "This is the direction. This is your job description, this is what you need to do." That is not who they were. They were entrepreneurs. Judy could leave town to go to Washington for a set number of days of meetings, and while there--add a trip to Sweden--because it needed to happen from her perspective. It absolutely needed to happen. So she would call back and say, "I'm not going to be home. I'm not going to be in the office on Friday." Joan would go, "Judy, we have a staff meeting," or whatever.

To Judy it just wasn't relevant. She knew she had to do this other thing. It was Joan's job to sort of make all that work [chuckles]. I thought Joan was a perfect person to work with the likes of Ed and Judy. Had she been like them as well and kind of had her own third direction, and everybody's pulling different ways, there would have been no organizational entity. So I give her a lot of credit for being the focus that could stay in one place and try to put things back through and could actually make sure that there was somebody who was paying the bills and they didn't recreate a kind of a CIL type of organization by not paying attention to what needed to be paid attention to at home.

Judy and Ed reminded me of some of the things we hear now about the "dot coms" where you've got these terribly bright young people who start up some business in their garage, they're multimillionaires before they're thirty, and then all at once they're supervising these people who are twice their age or whatever [laughs]. Ed and Judy are those kinds of people; nothing was going to stop them from doing what they thought needed to be done. Too bad there wasn't money for them attached to it.



41

Director of Pleasant Hill Independent Learning Center, 1987

Bonney

You left WID in '87. Where did you go after that?


Baldwin

Actually the last year of the contract with the Department of Social Services, Ed Sarsfield wanted me in-house and didn't want a contract with WID anymore. It had to do with San Francisco getting more and more careful about contracting with entities outside San Francisco city and county. He felt like he was going to lose the contract with WID if he kept it. So he talked with Ed and Judy and they did a transfer, so although I was still doing the job I was no longer officially with WID. That lasted for about a year or a year and a half. We knew that this was a short-term contract that had a lot to do with Ed's tenure there and a lot of other things. At the end of that contract I took a job as the executive director of the newly-formed Independent Living Center in Contra Costa County. The state had just, through the A.B. 204 funding that I mentioned earlier, augmented that funding, and new centers outside of the original ten or twelve were starting to be set up.

I was not the first director there. They had had a director that had stayed for a little less than a year, so I was the second director.


Bonney

Where was it physically located?


Baldwin

It was in Pleasant Hill at that time.


Bonney

So you had worked at the original Independent Living Center--CIL. What was it like to go to another one and be the director there?


Baldwin

I think that two things happened. I was really surprised how much I learned at CIL, that going into this new center which was much smaller--we had a budget of $250,000, kind of the start-up budget that the state was giving grants for--and we had five staff, and it served a huge area. CIL's service area is northern Alameda County. The organization in Contra Costa served all of Contra Costa and Solano counties. We certainly had to focus more on services and less on advocacy than CIL. So it was a different kind of organization. I was amazed at how much I had learned from what was really a short stint at CIL, how many little pieces of things fell my way that I learned about through fundraising and legislative work and supervising staff and working with boards of directors. It felt like being in rural America--if you can imagine Pleasant Hill, California, as rural America--as compared to CIL, which was such the hub of everything.

The reason I left there had nothing--I really liked the people and very much liked the job--I was absolutely isolated because the transportation system in Contra Costa County was so inadequate. Because I don't drive, I found I couldn't live my life there. I could very much enjoy the job, but there was no transportation after seven P.M. at night, for example. In between communities, even though you wouldn't be able to tell where one city began and another ended, the buses didn't cross those city lines in many cases. So if you couldn't get to BART, you couldn't get anywhere. It just became more a life hassle, but it was a wonderful experience watching the community develop services for itself for people with disabilities.


Bonney

So you actually moved to the Pleasant Hill area to live.



42
Baldwin

Yes. At the time, my daughter was in elementary school and it was very important to me as a single parent that she and I lived and worked and went to school in the same zip code if possible [laughter].


Job at Berkeley Outreach Recreation Program

Bonney

Then you went to work for BORP [Berkeley Outreach Recreation Program, now called Bay Area Outreach Recreation Program]. What did you do there?


Baldwin

I was the director at BORP, and it was clearly a transition job. That's how it was agreed to between the board of directors and I.

When I first began to work at CIL my daughter was three years old. One of the things that quickly became a wonderful experience in my life was being able to take advantage of some of the BORP activities because as an adult with a disability I could take my child camping or skiing or any number of other things through BORP trips. I, as a visually-impaired mom with a very small child, would never have been able to do that on our own. So I had developed this very strong affinity for programs like BORP.

As I began dealing with the fact that the Independent Living Center in Contra Costa was not going to be the end-all job that I had hoped it would be because of the transportation system, I began to talk to people about what my options were. One of the options was coming back to CIL. I looked at that and thought about that. Can you ever go back to where you've been and recreate something? The director of BORP at that time approached me and said that she was going to be moving on, and she wondered if it was a job that I would be interested in at all.


Bonney

Now who was she?


Baldwin

Jill Sager. I didn't know anything about how the program was structured. I had been on the receiving end. I had taken the trips. Then I began to meet with some of the people there and with the board, and I could tell that it probably wasn't a job that I would be best suited for. I don't have a recreation background. I think raising money for recreation programs, no matter how critical I think they are, is really hard. But they were in a real bind, and I agreed that I did want to get back into what I considered the real world by that time, where the buses ran and that kind of thing. I loved the program and certainly wanted to see it survive. I said I would be willing to take the job for a minimum of a year.

It was almost not as just a placeholder but somebody who could come in and help them maybe rethink about how they were doing things, but at least keep it going until they could determine what to do. I ended up staying eighteen months, and in many ways it's the hardest job I've ever had. Yet here we were, five staff, in Eshelman Hall on the UC Berkeley campus with all these students traipsing through our office all the time. On the one hand, it seemed like one of those very grassroots "isn't this all wonderful?" programs, yet on the other hand it was literally one of the hardest jobs that I've ever had.


Bonney

Trying to keep it together financially? What was hard?



43
Baldwin

Yes, right down to things like they would close Eshelman Hall during Christmas break so nobody could come into the building for two weeks or more. But some of the funding we had from the city of Berkeley and the feds, reports were due December 31. At that time there weren't people with computers in their homes. You had to plan way in advance to be able to fit in with the school schedules. Funding was hard. I'd end up running trips on the weekends and then coming and working all week, and then running a trip the next weekend because staffing was hard. It was a very difficult and not very rewarding experience.

Of all the jobs that I had had it's the one that I feel the least--it was that I contributed the least in terms of overall outcome, and that's probably why it seemed unrewarding to me, because I just didn't feel like I ever contributed enough to really help this program stabilize. I had never left a job kind of feeling that way or had that experience while on the job. But I think the program is incredibly valuable.


Bonney

Who was hired behind you?


Baldwin

I think they went through several people. I don't remember in what order and who was actually--a woman off the board of directors, Eve Donlon, actually did a lot of the administrative work right after I left, kind of holding it together, because they had never been able to really have enough funds to hire a fulltime director. Whoever took the job had always--even if they worked full time--it would have been part-time pay. I think that David Lewis may have been the director for a short period of time. There may have been somebody else.

Then most recently is the person who came from the Cal Adventures program, Rick Spitler. He's now the director, and he's been there a while. He's a good match. I hope there's a way to keep funding going through that program. Whenever I see him I just always think, "Yeah." [laughter]


Director of the Rose Resnick Lighthouse for the Blind

Bonney

Then you took the big step and came to the Rose Resnick Lighthouse. How did you get here?


Baldwin

I was sitting in my office at BORP on the sixth floor of Eshelman Hall looking out my window one day, and my phone rang. One of the people that I had worked with for a long time who happened to be blind called me and said, "We're having a rally tonight because we're looking at trying to close down the Lighthouse For the Blind in San Francisco. We're sick of how they treat blind people and we're sick of the services." I thought, "Wow, that's pretty radical." [chuckles]

I began to look into the organization, and within a couple of months their director kind of disappeared off the scene. This guy had been there and then was gone. I didn't really know anybody, and the community was saying, "Oh, yeah, we got rid of him; we got the board to fire him," and stuff. It seemed like this organization was just--I felt in my mind it was like the Titanic. This was an organization going down. But I also was intrigued as to what its problems were and why it was happening. Somehow I found out that before the


44
director left they had been in this hiring-director mode. I figured it was already closed, but I called and they were still interviewing.

I sent my résumé in on a fluke, and they called me for an interview. My interview was at 101 California in San Francisco in the corporate headquarters of a brokerage firm. I had never even been [laughter]--this was not my background. I did have sort of the interview suit and what you wear when you go to meet with corporations and foundation giving programs. I walk in this building and I'm thinking, "There is no way that I am a fit for this organization." The two people that interviewed me were men in their early forties at the time--a few years older than me--who really were, although now very much part of corporate America, old hippies [laughs].



[Tape 4, Side A]
Baldwin

The two gentlemen that interviewed me, we just started talking, and we talked for four or five hours. I left and I thought, "They don't know a single thing about me." We never talked about my administrative skills, what I thought I could do to run an organization, why they should hire me over all these high-powered people that I know have applied. I left thinking, "Well, it was a nice afternoon, but there's no way that they're going to hire me."

I had decided that one of the things I would do is give them many references as opposed to giving them three. I gave them three pages of references from the administrative assistant who first worked at WID with me to Ed Roberts. After each reference I wrote a little sentence about why I thought they might be a good person for them to check with.

Here I thought these two guys were just interested in spending the afternoon hearing themselves talk. But one of them took that three pages and called every single person on it. They called me two days later and said, "We're very interested. We would like you to come for a series of interviews."

There were three interviews after that. What I began to discover about the organization was that they were in some serious financial trouble, that they had been through a really hard time. The community who thought that they had been responsible for ousting the director really were probably only listened to after the board began to realize there were fiscal problems and that there were staff problems and all that. I think that one of the things they thought was, "If we hired a visually impaired female the community might shut up. That person probably wouldn't be able to do anything fiscally," but if they put a good finance person in maybe--you know.

I really believe that I was hired because they thought it would quell the community outrage, but these corporate guys never believed that I could run the organization and that they were going to have to lay in some kind of staff to do that. I can remember the chair of the board six months into the job saying, "You really do understand these financial statements, don't you?" I looked at him and said [incredulously], "Would you have hired someone that didn't?" [laughter]

Those particular people that interviewed me became and still are very good friends of mine. Wonderful guys who didn't know what was going on any more--they knew they were supposed to say things like "accommodate your disability" but they had never had a blind person in management here, so they didn't know what to say. So finally they said,


45

"What could we do so that you could do your job," and they're stumbling around and I said, "You're hiring me to be able to take care of that for you. I will accommodate myself and I will accommodate anybody else who needs accommodation." [laughter] There's this audible sigh of relief. It was an organization pregnant for change. They were just ready to have change.

I had so much I could learn from them about an organization that is--I mean, this organization will be a hundred years old in 2002. It's got a long and very institutional history. It gets large amounts of bequest income that in the eighties were just being spent all the time. I came from the poverty organizations, so I had a different mentality: Shove as much in savings that you can so that you can use it to fund you in a slow year, which fit with sort of their conservative belief systems even though that isn't how they viewed me coming in the door.

So it was one of those unlikely relationships. I've been here ten years; I had never planned to be here ten years, and I have no plans to leave. So it's very much one of those "in process" things. I could decide at the end of this year that this is enough, that they need new blood or whatever. They could decide that same thing. It's been a wonderful relationship of both parties, of both the board and I understanding that we both have the ability to make change when we need to. There's no contract; I'm just at will. Growing with this organization has been a great experience.


Bonney

What does the Lighthouse do?


Baldwin

Let me explain it in two ways. I think what I brought to the Lighthouse is that its service delivery system looks very much like an independent living center dedicated to people who are blind. Not surprising, given that that's where I came from. About 50 percent of our staff are visually impaired. When I took the job there were two people with visual impairments working here. I just don't think visually impaired people thought of applying. I don't think that it was a thing that they weren't wanted; I think people didn't think about a blindness institution--they're just so institutional and so traditional and so distant and removed from the community. In a sense, what we did was we brought the community aspect back into the organization.

We provide rehab services and access services. By that we provide orientation and mobility training. We do a lot of work with newly visually impaired people with how to do things differently in their lives, whether that be cooking, traveling, reading, writing, whatever those things are. We do a lot of work now with assistive technology, obviously, which wouldn't have been done fifteen or twenty years ago.

We have a telephone reader service that makes information available. You can call in and get the newspaper read to you. A lot of what we're looking at is how to communicate now, through learning Braille, through using the computer, through accessing the telephone or the TV or different things. How do you put together accessed information in your life? We have a volunteer program that places volunteer readers--predominantly older people, but not exclusive to older people.

We have things like a store that sells aids and appliances at a much less cost than if somebody needed to make a profit would be able to sell them for. They're not discounted;


46
it's just that we just need to break even, whereas if you and I went out separately and tried to do a store, we would need to make a profit.

We do a lot with seniors because that's where the largest percentage of vision loss is. In most cases it's people who've had normal vision all their lives and while dealing with everything else going on with aging they are "blindsided" by this vision loss thing.


Consumer-based movement at Lighthouse

Baldwin

It's all about the same principles: if you were at an independent living center you'd be talking about empowerment, problem solving. The independent living philosophy that I believed in was that it's the society that needs the attitude adjustment. It's not that the people with the disabilities need therapy. If we remove the barriers and integrate the society, you and I are not going to need counseling to deal with our disabilities. I modified that belief system a little bit in working here particularly with seniors. I think that many people losing their vision late in life do need some emotional support around that adjustment process. Giving them tools and problem solving and just getting them to just spend time with other people with vision loss is incredibly important, but they may also need the support group model. That's a little bit different than what you might see in some independent living centers.

On Saturdays we host many community meetings: the consumer groups, the California Council of the Blind, National Federation of the Blind--we can be fuller on Saturday than on Wednesday. A lot of that was my generation's reign here. That is that we really felt that organizations for the blind needed to be more connected in with the communities that they're related to--not necessarily serve, because there's a lot of blind people who we may only see here because they need to buy a cane or a watch. But they may come to a community meeting here and, therefore, they know we're here, therefore, we can get input from them. It felt like a group that we wanted to include in some way, but we needed to define it by what was relevant. So to have it be a meeting place or a central focus has turned out to be a really good thing. It gives me a vehicle for keeping in touch, and they'll pull me into their meetings and yell at me. It's not the honeymoon days, believe me! [laughs] I'm the one who chooses to sit behind the desk so I'm going to have to accept the fact that people get real annoyed at some of the things we do.

We have two separate programs. One is we run a camp in Napa that is predominantly for blind children. It runs in the summer, and we have a lot of adult sessions. We have a senior seminar. We have a couple of sessions for multidisabled folks who really the only time they got out of the board and care is when they come to our camp facility. It's one of those places that initially I would have wanted to integrate more, coming kind of out of the independent living movement. I really believe now that people need five or ten days out of their lives each year where you can just be blind and it's just okay. The camp is set up like that; it's the reverse of the rest of the world. What do blind kids do when they get together? The same things sighted kids do when they get together, when you remove the barrier of blindness [laughs]. They play pranks on each other, they're obnoxious and wonderful [laughter], the teens get together and try to figure out how to pair off. We, as the staff, try to keep them from doing that [laughter].


47

What I've learned through the history of independent living and then the blindness stuff is not to let my belief systems get too rigid, to stay open to the fact that there are moments that you do things in different ways.


Bonney

What do the blind community organizations scream at you about?


Baldwin

[laughs] I'm trying to think of a latest issue to use to be able to generalize it into more of the issue. I think that in a way similar to what many times we would hear at the Center for Independent Living from the Berkeley disability community, and that is that we're not meeting their needs, we're more focused on seniors than on people who have been blind since birth or whatever. The different groups, the different populations have different reactions.

Some of it for me is simply that we're reachable by them. They can complain because they get heard. They may not like the outcome always. They may come in and say, "You don't do enough of A, B, C, or D," and that doesn't mean that we can turn around and go out and do more of it. It also may mean that they may help set the direction. It's got more to do with--I want the doors open because I want to hear it.

Sometimes I think it's frustrating because they think they're just talking to the air, but they're not. I think the disagreement and the discourse is incredibly important. No one likes to be yelled at by anybody, [laughter] yet sometimes it takes them getting riled up before they--I wish people would just come by before they're really angry. But sometimes it needs to get to that bubbling over stage for people to decide it's important enough to get their input. So I realize that along with that is going to come anger directed at individuals because it needed to get to that level before people would step out of themselves and raise the concerns.

There are a couple of things I like about the blindness biz a little better than the more generic disability rights movement. One of those is we have consumer-based organizations that are political entities that look at philosophy and legislation. It's not coming out of the agencies; it's coming out of the consumer movement, and I like that. I feel like I take my marching orders, in terms of philosophical issues, from those organizations. So if Braille literacy is an issue to those organizations, I believe my organization needs to be looking at Braille literacy--and what are we doing about it? I may have come to that on my own, but it's going to be way more important to me if those groups hold it as an important issue.


Bonney

Who are those groups?


Baldwin

The American Council of the Blind and the National Federation of the Blind are the two nationally organized consumer groups. They're kind of like the Democrats and the Republicans: sometimes they disagree with each other and so then you're like, "So now what do we do?" Sometimes their cross purposes will make no sense, and you do have to then decide whether you're going to--they're just like any other groups of people--we're people, and therefore--.

What they afford for me is communication vehicles nationally. I mean, they do have national conventions, and they do have state and local chapter and convention-type meetings. So there are ways to hook in and get information. I can be a member of those groups and they do not care when I'm at those meetings whether I'm the director of the


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Lighthouse for the Blind in San Francisco. I'm a blind woman participating in that consumer organization. I really like the ability to be a participant. I sure wish we could deal with all our disagreements behind closed doors and come out with a unified front sometimes, but I think the process is very American.

I see people that become part of the consumer groups, and the other undercurrent thing that's going on is the development of a disability culture around blindness and a sense of a broader community that to me is worth whatever it takes.


WID and CIL legacies

Bonney

Let me go back just a little bit to WID for a second. What do you think is WID's legacy?


Baldwin

My people-reaction to that is, "Where were Judy and Ed supposed to go next?" What do you do when you have leaders that are such leaders? They've done the state Department of Rehabilitation [chuckles]. Where do you go with that? Part of what was going on for them was creating the next level for themselves and where they thought--I don't think that they were so arrogant as to assume that this was what the disability biz needed. I think it was much more from the perspective of this is what they could do now. In looking back on it, I think the legacy is that it was a major attempt to pull together disability rights worldwide, and I think that's the legacy.


Bonney

In the same vein, what do you think is CIL's legacy?


Baldwin

When I read the mission of CIL and it said the Center for Independent Living was operated by and for people with disabilities I realized that I had always thought that that's how it ought to be for ethnic minority organizations or religious organizations or women's organizations. But it was the first time I thought about it in relation to disability organizations. So I think the fact that the model is consumer-controlled, that it's by and for people with disabilities, that it's a civil rights movement that provides services, that all those now filter--you know, currently one of the discussions going on on the national scope is what the independent living centers would call segregated services. They would say what the Lighthouse for the Blind provides is segregated services because we serve blind people, or you'd have to have blindness as one of your disabilities.

I smile at that because that to me is just people looking for ways to deflect the funding stream. Even though one of the principles of CIL was cross-disability, for political reasons as well as other reasons, I do not think that the intentions of CIL in the early days was to disavow all of their services. They wanted to have a change, and they made change. I'm in this organization doing what I learned to do at CIL in 1980.

So the legacy is putting people out there in the community that would just kind of slightly turn the way organizations run so that--it could be ever so slight in so many ways. I still have a board that is predominantly corporate, but you know, those corporate people absolutely hang on the words of the program committee, which is almost all people who have personal professional experience with blindness. They would not take a step without that group saying it's the way to go. That to me is something that the outside world never


49
sees, and I know that it means the whole way that the organization functions is different, even though on the surface we could look the same. That to me is what independent living brought to this organization. I wish the independent living centers, if they did nothing else, would just grab people with disabilities and spew them out believing something different [laughter]. Let them go out in the world and just do their thing.


Use of assistive technology

Bonney

Early on you said that when you were growing up you never got large print or anything until you took the SAT in high school. Now you're running the Lighthouse. What kind of assistive technology do you use and what difference has it made in your life?


Baldwin

I use a ton of assistive technology when I think about it. I had talking scales for a while, but it was too depressing so I don't get on those very often [laughs].


Bonney

Weight scales?


Baldwin

Yes [laughter]. I have a computer that has speech output and large print capabilities. I use the speech output. I have some vision, but it's really not useful detailed vision, so I tend to use the kinds of accommodation that a totally blind person might use. So I use speech output on my computer. I use a Braille display on my computer part of the time. So for example, I have a scanner hooked up to my computer, so I would take my mail, potentially, and scan it, take it into my computer system and read it with speech output. If I compose a document where I'm really concerned about formatting and that kind of thing, I'm going to use my Braille display because it shows you which character and you're not having to listen to artificial speech and wonder what's going on.

I use a closed-circuit TV magnifier which lets me sign my name in the right place and do some cursory reading. I have an item that I carry with me these days called the Parrot Plus, which is the closest that we can get to Palm Pilots that are accessible to blind people. It's a bit accessible. You can program in some phone numbers and it'll read them back to you. It's small enough that you can carry it in your bag. I have talking calculators, Braille watches, talking watches. It's amazing to me. When I go on a trip, I will take a combination of Braille, a cassette player with tapes, and a Type and Speak, which is a type of a notetaking device. The various electronic and more typical things like Braille that I will take to go out of town is pretty amazing.

In terms of the workplace I probably process 500 to 1,000 pieces of paper a week that I need to read and have access to. I sign my name about that many times on documents that go out the door here, so I have to figure out ways that I know what those documents are about. Also, my assistant in his job description is "reading as needed." So many times it's the same thing that somebody in my job would have been doing fifty years ago, and that is you're sitting with a sighted person and they're reading you your mail. Sometimes that's still the most efficient.



50

Influence of Judy Heumann and esteem for Greg Sanders

Bonney

I have one last question for you. Who influenced you the most in the disability field and why?


Baldwin

In the disability realm it's probably Judy Heumann. The reason is because I came to know her, as I said earlier, without any regard for who she was. She was just a person I immediately took to. She's also a person who immediately takes to you. It's interesting to know someone who does function on so many different levels in terms of how they interact with people. I think that my appreciation for disability as really an okay thing--it's just how you do life--probably came from my interaction with her.


Bonney

Anything else that you'd like to talk about that we haven't covered? Any final thoughts?


Baldwin

I'm not coming up with anything as if there's anybody in terms of the whole CIL time that might be important to speak of. I would like to say one thing about--we did not talk about Greg Sanders. Greg Sanders was one of those people that was always sort of around CIL mainly because he lived less than a block away and was sort of in and out of the political activity. Greg always felt to me as somebody who was thrown into disability. He really would have liked to have been a ski bum. Had he not become a quadriplegic he probably would have been a ski bum [chuckles]. He was so physical before his disability that he had to really rethink how to be after his accident. My experience with Greg was he was one of the smartest people I knew. He was very bright. He was also different from Judy but another one of those people I spent a lot of time with and I feel like was a major contributor to how I began to be myself as a person with a disability.


Bonney

Did you work with him at CIL?


Baldwin

I think when I first came he might have actually been part-time on the payroll doing some advocacy stuff, but he was in and out of CIL. As we became friends we just spent time together. When he was working at CIL--I think he was acting director for a while--he would call me to talk about how crazy and chaotic it was. We could laugh together about the CIL experience. But we were never really working at the same time.


Bonney

So you weren't at CIL when he was the acting director.


Baldwin

No. But I was one of the people in his constellation that he could call and talk about how hard this was. For a short time he served on the board of directors when I was there. We were friends who helped each other. We tried to support each other. He's just a very smart man. I think it's a loss to the community--there are many people that have died in the last twenty years that I think are just real losses to our community, and he's certainly one.


Disability Rights and Independent Living Movement Oral History Project

Donald Galloway

The Independent Living Movement in Berkeley and Colorado: Blind Advocacy and Minority Inclusion

Interview conducted by
Fred Pelka
in 2001

Regional Oral History Office
The Bancroft Library
University of California, Berkeley
Copyright © 2004 by The Regents of the University of California

Foreword

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.

Copyright and Use Restrictions

All uses of this manuscript are covered by a legal agreement between The Regents of the University of California and Donald Galloway, dated August 6, 2002. 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, The Bancroft Library, Mail Code 6000, University of California, Berkeley, 94720-6000, and should include identification of the specific passages to be quoted, anticipated use of the passages, and identification of the user.

Citation

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

Donald Galloway, The Independent Living Movement in Berkeley and Colorado: Blind Advocacy and Minority Inclusion, an oral history conducted by Fred Pelka in 2001, in Blind Services and Advocacy and the Independent Living Movement in Berkeley, Regional Oral History Office, The Bancroft Library, University of California, Berkeley, 2004.

Tape Guide

  • Tape 1, Side A 59
  • Tape 1, Side B 67
  • Tape 2, Side A 74
  • Tape 2, Side B 81
  • Tape 3, Side A 88
  • Tape 3, Side B 95
  • Tape 4, Side A 102

Interview History--Donald Galloway

Donald Galloway was chosen as an interviewee for the Disability Rights and Independent Living Movement Project because of his role in the early days of the Center for Independent Living in Berkeley, and because of his efforts to open the independent living movement to people of color.

Galloway was born in 1938 in Washington DC and disabled at age thirteen after being struck in the eyes by a friend's bow and arrow. Due to a lack of proper medical care, the wounds became infected and left him totally blind. Galloway subsequently spent three years in a residential, racially segregated school for blind children in Overlea, Maryland.

Galloway's first political involvement came after his family moved to Los Angeles in 1954. In high school he became vice president of the local junior branch of the National Association for the Advancement of Colored People. His first efforts in disability rights activism, understandably, were in the blind community, as a junior member of the National Federation of the Blind. Galloway graduated from high school in 1958, attended college for a short time, and then left school for a career as a folk singer. He returned to school in Los Angeles and San Diego to earn his BA in science and sociology and his masters in social work. From 1969 to 1971 he traveled throughout Latin America, researching the social, political, and economic status of people of African descent.

Galloway's introduction to the independent living movement came in 1974. By this time he was living in Berkeley and was disillusioned with the factionalism inside the NFB. Ed Roberts invited Galloway to work with the Center for Independent Living as its director of services for blind people. It wasn't long before Galloway also began pressing the almost entirely white independent living movement to become more inclusive of people of color. Galloway worked at the CIL from 1974 to 1977, then moved to Colorado to become the executive director of the Colorado Governor's Council on the Handicapped. In 1978 he became director of Peace Corps programs in Jamaica, helping to remove barriers to disabled Americans wishing to volunteer overseas. Returning to the U.S. in 1980, he coordinated Peace Corps efforts worldwide in connection with the United Nations International Year of Disabled Persons. From 1982 to 1987 Galloway was the director of the District of Columbia Center for Independent Living, and since 1987 he has been the manager of the Special and Demonstration Programs Division at the District of Columbia Department of Housing and Community Development.

Galloway has been a founder and vice president of the National Association of Minorities with Disabilities, a founder of the Multi-Cultural Committee of the National Council on Independent Living [NCIL], a member of the NCIL executive board, a member of the Task Force on the Rights and Empowerment of Americans with Disabilities, and the founder and director of Visually Impaired Persons of Color. He has, in addition, returned to the National Federation of the Blind to become one of its leaders in the Washington DC area.

I interviewed Mr. Galloway at his home in Washington on December 9, 2001. We had the house to ourselves, and since it was a Sunday there were no interruptions. Afterwards he very graciously gave me a tour of his collection of African art. Mr. Galloway reviewed the transcript of the oral history interview and made no substantive changes.

Fred Pelka
Interviewer
September 2003

Florence, Massachusetts


59

Personal background and childhood, accident with bow and arrow


[Interview: December 9, 2001] [Tape 1, Side A]
A guide to the tapes follows the table of contents. Pelka

First of all, where and when were you born?


Galloway

I was born in Washington, DC, at a hospital called Gallenger, which is now DC General, and was born in 1938, March 21. At 1:48 in the morning. [Laughs.]


Pelka

Would you give me a little background on your parents? For instance, what did they do for a living, say, your father?


Galloway

Well, my father, it was my stepfather actually. He used to work on contracts and used to build bridges. As a matter of fact, the bridge going over the Chesapeake Bay, he was one of the first to be hired. As you know, initially, they discriminated, and after a couple of bombings of some shacks and what have you, they started to hire black workers, and he was one of the first ones to be hired. He used to sing on the radio every Sunday with a quartet. He worked mostly construction. He helped to build Walter Reed Hospital and worked at Douglas Aircraft there, and Tide shipyard in California. He was a chipper.

My mother was a housewife for a while. Then she started to work in theaters, cleaning up the theaters. As you know, those theaters were segregated, when I was coming up. She was a maid, housekeeper. Then she became, not a nurse, but a nurse's aide at the Orthopedic Hospital in California.


Pelka

What was your childhood like?



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Galloway

I had a wonderful childhood because I came from a large family of ten. Actually, eight brothers and sisters. Five brothers and two sisters and I didn't realize we were poor. We always had food, though it was a restricted diet, because of the largeness of the family, and my father was the main breadwinner. I lived right at the edge of a forest, in a place called Parole, Maryland. I used to play up and down the hills and the forest, and I had a wonderful childhood. It was really fun.


Pelka

I just want to back up for a minute, do you know the spelling of the hospital you were born in?


Galloway

Gallenger, no, I don't.


Pelka

How about Parole?


Galloway

Just like the word, parole. It used to be an old Civil War camp, back in the nineteenth century.


Pelka

You said that you had five brothers and two sisters?


Galloway

Yes. I have two sisters and five brothers. The first were three boys, then two girls, and finally three more boys.


Pelka

Were you born with a disability?


Galloway

No. I got shot playing cowboys and Indians when I was thirteen years old. Those colonial games. I got injured and because of the lack of knowledge, lack of accessible doctors, and racism, I lost my sight.


Pelka

When you say, you got shot, what do you mean?


Galloway

With a home-made bow and arrow. We were playing, shooting at each other in the backyard. Like I said, I was brought up in a very wooded area. All the kids used to get together, the boys, of course, and play war on each other.


Pelka

I want to get back to that in a moment. But before that, was there any other disability in your family?


Galloway

No. Well, there is some now, but at the time I was a kid, we didn't have any. I have a nephew with cerebral palsy, and a little niece with cerebral palsy. But that was it. I was the first blind person that I knew of.


Pelka

Did you have any disabled friends? Were there people with disabilities that you were familiar with before you became disabled?


Galloway

No, because most of the kids that had a disability, if they had a disability, were institutionalized, or away from the community. So I really didn't have a sense of what disability or having a disability really was at that time. I was the first person that I knew that was blind. So I didn't have any attitudes about it.



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Pelka

That was my next question. If you remember having any attitudes or impressions about disability or people with disabilities.


Galloway

Well, in our community, the persons that you would see with disabilities would be older people. I knew of a man who was an amputee. He used to use artificial legs and he used to get around, and he drove a truck and he functioned. The only other person I knew of was an old blind man. He was at least eighty-something years old. He'd just stand around in the house, you didn't see him on the street very much. My recognizing of people with disabilities was very few. You just didn't see them.


Pelka

Do you remember anyone talking about disability in any particular way?


Galloway

No. The only reference, of course, would be the reference to being mentally retarded or crazy. Those are the expressions we used then. There was one woman I remember now that you brought it up, that was put into a mental hospital. It was Crownsville, in Baltimore. Actually, it was Crownsville, Maryland. It was pretty devastating for her. They used to chain them to walls and keep them in locked wards. It was really a terrible place, a terrible place to live.


Pelka

Were you aware of that at the time, or is this something you found out later?


Galloway

I was aware of it at the time because everyone knew about Crownsville. Everyone knew that once you got put into Crownsville, you were out. You were isolated for the rest of your life in society. None of the people that I knew of ever came back to the community. They usually died in the hospital or stayed there.


Ignorance and racism affect degree of disability

Pelka

Getting back to your own disability. How old were you again, when this happened?


Galloway

I was thirteen. I'd just graduated from elementary school, going into junior high school, Bates Junior High School. I got injured that summer, and because of my parents trying to find medical care, we went from here to North Carolina. My uncle had a tobacco farm in North Carolina. When I went down there, they took me to Duke University, and they refused to give me any medical care because I was a resident of Maryland. By the time I got back, it was too far gone. The infection set in, and I started losing my sight.


Pelka

You said before, I think you said, that ignorance and racism had a role in how your disability developed. Maybe you could talk a little bit more about both of those factors.


Galloway

Okay. In our community, we only had white doctors, except for one family, I think. There was a husband and wife who were both doctors, but they didn't specialize in eye care. When I got injured, we went to a white doctor, and he was having dinner with his family. He just didn't feel that he wanted to interrupt his dinner to take care of my eye problem at the time. He basically just patched me up and sent me back home, cleaned me up and sent me home. Then I started having tremendous headaches and didn't realize what it was. When I went back again, infection was setting in and they started


62
giving me eyeglasses instead of penicillin. I was running into doors and things like that. I went back the third time and they realized, hey, this guy really has a tremendous infection, and they started giving me massive doses of penicillin. They had to stop because it was affecting my hearing. I had a ringing in my ears. I used to take, oh, thirteen shots a day. Just a lot of shots of penicillin and other medication.

The ignorance came in, in that we really didn't know where to go for the care other than to go to Johns Hopkins. We went to Johns Hopkins, but that was an all-day trip for us. Taking the bus, going to Johns Hopkins, standing and sitting in the clinic, being seen. So my mother would go with me and we would stay all day in the place. Then I went to North Carolina and connected, like I said, to Duke University, and they wouldn't serve me because of the resident requirement. I had to go back to Maryland to get any kind of treatment. We were just not aware of how serious the injury really was at the time.


Pelka

You were thirteen, this would put it in 1951?


Galloway

That's correct.


Pelka

Up until your disability, what was your education like?


Galloway

We were educated by having each grade in a separate room. We had a fiveroom elementary school, called Parole School. One grade had a small room in back of a church, and that was the third grade. Basically, everybody knew everybody in the community. It was very disciplined. You would have to sit, and you would get whipped if you didn't know your lessons. I hated it, to tell you the truth, [laughs] because it was so restrictive, and it was so hot during the spring and what have you, and in the wintertime it was so cold. The teacher had the right to whip you. If you got a whipping at school, you would get one at home. It was very harsh.


Student at Maryland School for the Blind

Pelka

How did your disability affect your education? Did you go back to the school you had been at?


Galloway

No. I was out for a year, back and forth to doctors and trying to stabilize. When I went back to school, it was to the Maryland School for the Blind. I was so happy to go to school because I was sitting at home all that year. Listening to and looking at TV programs with my mother, Helen Trant and all those programs. It was just boring as hell, because all the kids were in school and I was isolated with my mother. When I went back to school, I was just delighted. I went to Maryland School for the Blind. All the kids were running around and doing activities, and having a ball. They rejected me because I had an ear infection. That summer I went to Boy Scout Camp, and punctured my eardrum. Because it wasn't cleared up, and the infection was still there, the school refused to let me come in the first semester. The second semester, once it cleared up, I went back to the school and enjoyed it for three years.


Pelka

Where is the Maryland School for the Blind?



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Galloway

It was called Overlea, Maryland. Outside of Baltimore. It basically was a residential school on a forty-acre piece of land, on a farm. We just had full-range of the acreage. Except for the farm that was on it, of course. A farmer had his crops all around us. We lived on forty acres, separated black and white, of course, at that time. On one side of the campus was all black, and on the other was all white. On the black side of the campus, we were integrated with the deaf school. Of all disabilities, having the deaf working with the blind, or going to school with the blind, was the most difficult. We were together but separate. Communication was really difficult.


Pelka

Was the Maryland School, was it an oral school at the time, or did they use sign language?


Galloway

They used sign language. I think the oral tradition came in later. They used sign language, and all the kids were totally deaf except for one or two. We had one kid that was obviously white, he was Italian. But because he was a dark-complected Italian, he was on our side of the campus.


Pelka

What month and year did you begin at the Maryland School?


Galloway

I started Maryland School for the Blind, the month was probably something right after Christmas since they didn't accept me the first semester. Probably around January. I started the school in 1951.


Pelka

So you were fourteen at the time?


Galloway

Actually, I was thirteen at that time. I turned fourteen in March.


Pelka

You talked about coming into the school and kids were running around and stuff. Do you remember what your first impression was when you entered the school?


Galloway

Yes. My aunt that lived in Baltimore, and my mother took me, and my father, took me to the campus, and when we stopped on the black side of the campus, all the kids came running to the car and wondering, "who's this new kid." They were touching and wondering who I was, and they were all my peers, and I was very excited. Then I couldn't stay, of course, because of the infection. My impression was, this is not so bad, this is fun. I really enjoyed the period that I was in the Maryland School for the Blind. I never felt the sense of loss as most people go through with some disability. I really enjoyed it because all the teachers were white, all of the kids were black, on our side, and the social adjustment to being in a school with all white teachers was more traumatic to me than me losing my sight.


Pelka

How long were you there?


Galloway

I was there for three years. My family decided to go to California in 1954. We were part of that migration, after World War II, when everyone decided, that opportunities would be greater, going across to California, to the land of milk and honey. We packed our two vehicles. My father had an old Plymouth, and an Oldsmobile, and we packed all of our junk, furniture, refrigerator, what have you, put that on the old 1934 Plymouth, and all ten of us just went across the country. We took a week to go across.



64
Pelka

I want to stay with the Maryland School for a while though. You were there for three years, it was a residential school. Segregated by gender as well, right?


Galloway

Oh yes, oh yes.


Pelka

Did you have individual rooms, was it a dormitory set-up, did you have roommates? What were the living arrangements like?


Galloway

We had dormitories set up based on age. We had the younger kids on the second floor. Interestingly enough, the younger kids were taken care of by a deaf woman--she couldn't speak--an older deaf white woman that took care of the younger black kids. On the third floor, you had a dormitory with all the older boys, from thirteen up to about eighteen. Down the hall, you had the dormitories for the deaf. We shared the common bathrooms, but we were segregated not only by gender, but by disability and by race.


Pelka

How much contact was there between the different groups, for example, between the blind kids and the deaf kids? Was there any kind of socializing at all other than sharing the bathrooms?


Galloway

Not really. We had separate tasks in the dining hall. The blind kids, I was one of the ones who'd wash dishes for fifty cents a week. We would do the cleaning up, washing the dishes. The deaf kids, their labor force was to clean up the dining hall and to bring the dishes into us. But we were very separate in terms of our social interaction. I don't know of any blind kid that was going with a deaf girl, or vice versa, other than one. Very segregated. It would be the same with gender. The boys would be on one side of the plaza, and the girls on the other side, and a building in between, and the principal's building would be there. You would have an open plaza where they could see any kids going across, unless you go around behind the buildings to get to the girls. [laughs]


Pelka

Was there some of that happening?


Galloway

[Laughs] Of course. Of course.


Pelka

How many kids all together?


Galloway

I really don't know. I think there was probably about fifty or sixty, maybe seventy.


Pelka

For the whole school?


Galloway

No, for our side of the school. The white side, I don't know. We only came together with the white kids during gym. We had a gymnasium that was halfway between the black school and the white school and we would have gym together. The white boys would come to our side because we'd just had a new building built, and they would come over to learn cooking. But we didn't have very much contact with the whites.


Pelka

What would a typical day be like? How would it break down?


Galloway

Well, we would get up around six thirty in the morning. We would clean up our dorms. Which meant we would make up our bed and get ready for breakfast. We would line up for breakfast around seven thirty and go over to breakfast from seven thirty to eight


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thirty, more or less. Then from eight thirty to about nine, we would go back to our dorm to get our books and get ready for class. We'd go to class from about nine to about twelve, break out and have lunch about twelve thirty. Go back to school around one thirty, and have classes until four thirty, five. At five thirty, we would have time to get cleaned up for dinner. At six we would go to dinner. No, about five thirty we would go to dinner. Then six, six thirty, we would get ready to go to study hall and we would go to study hall from about seven until about eight thirty or nine. Nine we would be free and then ten we had to be in bed.


Pelka

Was there a chapel or religious services on the weekends?


Galloway

That's interesting that you mention that. The black kids didn't have a chapel. We had a white nun that would come on campus from a Catholic church in the community. We would all line up, and march, line up and go from the school off the campus to a black Baptist church in the neighborhood. Over a bridge, and a little way out, and go to a black church. Then after the church service, this nun would line us up and we'd go back to the campus. It was fun, because you got a chance to talk to kids and play up and down the line. But we were definitely well organized.


Pelka

Did you have a lot of contact with the community? Were you allowed off the campus very often?


Galloway

The white kids were allowed to go to the theaters, because there were theaters they could go to. The black kids were not. We weren't allowed to smoke; we weren't allowed to go off the campus; we weren't allowed to date, any of that. If you did go off of campus, you would have to get permission from your parents. The community around the school was predominantly white. You didn't go to the black community unless you went to church. I don't know if they had any clubs, or any social areas. We weren't really connected to the black community. We would have to go into Baltimore. At that time, there was a train, not a train, a trolley-car, that would go from Overlea, Maryland into Baltimore. Some of the older graduates would allow us to stay at their places. Bethlehem Steel, they had a guy who ran a little store, and he would let us use his apartment. Or a couple of people in the community, who were blind, would let us use their apartments, and we would go in that way.

At the time, we weren't even involved with using canes. So we would go in, without canes. I remember many a night, running up and down Baltimore, singing "Work with me, Annie", and I ran into a telephone pole, and I decided, nope, this is not the way to go. So that's when I got a cane, when I graduated. On the campus, it was a stigma to use a cane, so we didn't use a cane, anywhere on the forty acres. In the community, we would have to go to Baltimore if we wanted any kind of relief from this school environment.


Pelka

I want to get back to that issue in a little bit. What about visitors from the outside coming in. Your parents could come visit from time to time, obviously. But were there groups in the community that were concerned with the school that would come in and organize things, or anything like that?


Galloway

No. There would be one or two graduates that would come back and sit down and play the piano, and things like that. But there were never any organized community groups


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coming in. The only group that I remember coming in would be the Lions Club. The only reason I know that is because I formed a quartet, a singing group, because my father and family were a singing group; we were always singing. When I went to the School for the Blind, I organized a quartet. Because we got really good at it, the Lions Club would bring us out for some of their functions. We would sing, and they would give the school the money. The school would take us shopping for shoes or clothes that we might need. We never received any money directly. That was the only organized effort that I knew of.


Pelka

They didn't offer any kind of mobility training, or did they?


Galloway

No. The natural flow of the day would mean that you would learn to use every aspect of your consciousness to get around. For example, your face, your hands, your hearing. All that was used to get around in the environment. Mostly, you moved around in groups, so you really didn't need a cane. We were supervised very closely and when we were not, we would run and move about. We didn't think about canes and things like that. Mobility, some of the kids were just naturally active you know, being young and all that energy--you would just move around naturally. Of course, me being partially sighted when I first got there, I used to be a great teaser. I would agitate a lot. The kids would track me down, and I would have to learn how to run. Of course, they were running. Mobility was not an issue. All the active kids could get around without canes. We didn't have a lot of obstacles. We just had sidewalks and open fields. It was fairly easy to get around, just by feeling with your feet and hearing and what have you. I think mobility-wise, it was a great way to learn, because today, my mobility is excellent because the cane came later.


Pelka

Was there any discussion or thought about what would happen after you all graduated from the school? Were they preparing you for any kind of vocation or career?


Galloway

I wouldn't say "career". I think they were really involved with educating us to compete. Because after junior high school there, you could go into the high school in the community. Most of our students were very bright. They taught us Braille, history, you know, all your basic classes. We had shop. We could learn how to weave, we could learn how to build things. I built my first skate-mobile at the school. You could learn how to use the saws and the lathes. It was really an excellent education. It was a balance between using your hands and using your mind.


Move to California, 1954

Pelka

Then you left the school after three years, so this would be what year then?


Galloway

1954.


Pelka

Okay, and you moved with your parents to California. What part of California?


Galloway

Compton. My father had five full brothers that moved to California after the world war. One of my uncles was a part of that Tuskegee Airmen that flew airplanes and


67
maintained airplanes and escorted some of your fighter planes. They were involved in that. All of my uncles were a part of World War II, and the younger one was a part of the Korean episode. So after the war, they moved to California. When my father decided to move to California, he had pretty much a base of relatives there.



[Tape 1, Side B]
Pelka

Okay, so you arrived in California with your family. Where did you go to school in California?


Galloway

Well, when I first went to school, I was sixteen at the time. They put me at John Adams Junior High School in Los Angeles. So I would have to take a little yellow bus every morning. I would have to get up at four thirty, get ready for the bus to come at five thirty and from five thirty to about eight thirty, eight o'clock, we would pick up kids all throughout the county, all throughout the city and get to the junior high school in Los Angeles. Then when they found that I was doing well--it was the first time since when I lost my sight--I was fairly integrated into the regular school population with resource rooms.

They were very advanced at that time with educating blind children. I didn't know about the other kids with other disabilities, but blind children they integrated into two high schools, John Marshall and Belmont. Belmont High School was for kids that were going to go into trades. The ones that they thought would be going to college they would put into John Marshall High School, which was at the extreme end of Los Angeles, up near the park, Griffith Park. I went to a junior high school in a fairly integrated setting with Latinos and Asians and blacks and whites. Then John Marshall, it was a pretty upscale high school and most of the kids there were Jewish and Anglos.


Pelka

Do you recall the attitudes of the other kids toward you, toward your disability?


Galloway

Well, a lot of teasing went on, of course, but it wasn't vicious teasing. In junior high school, kids seemed to accept us. We had a resource room we would go back to to get our studies, so it wasn't any burden on the class. We would compete just like any other student. We would play basketball with each other, a form of blind basketball [laughs]. During the lunch period we were totally integrated, and in the class rooms we were integrated. The only time we were separated was when we would have to go back to the resource room to get some of our assignments read, or we would have to take a test and return to that resource room. That's in junior high school. In high school, I really bloomed out. I was a folk singer, and I played the guitar and joined the Foundation for the Junior Blind, and I was very popular. I was like one of six black kids in this high school. These are not just blind kids, I was one out of six... And playing the guitar, I was very popular. I took two girls to the prom, that's how popular I was [laughs], at the same time! One of them was a friend, and one of them was a girl friend.

The Jewish community, the Jewish kids were very receptive. Then I went to summer school in my community at Centennial High School and I did very well. I took some classes and I became the vice president of the junior branch of the NAACP [National Association for the Advancement of Colored People] of Compton, and met a lot of the kids that way. I also became the treasurer for the junior branch of the National Federation of the Blind [NFB] when I was in high school. I was very involved starting


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the Foundation for the Junior Blind, Norm Kaplan, in Los Angeles. I was very instrumental in helping to get funding. It was fun.


Pelka

You said the Foundation for the Junior Blind, Norm Kaplan?


Galloway

He was the founding person of the Foundation for the Junior Blind. Norman and Nadia Kaplan. She's still living, by the way. She's a wonderful lady.


Political involvement with the NAACP and the National Federation of the Blind

Pelka

You've brought up the NAACP and the NFB, so I want to back up a little bit. What do you remember as your earliest political awareness as a kid?


Galloway

Well, my first political awareness was with the NAACP. We met the kids, they were bombed at the school in Alabama, or was it Oklahoma, no Arkansas. Little Rock. The teenage girl that was in that first group came out and talked to us. Mr. Robertson, he was one of our officials in the post office at that time. As you must know, the best jobs that blacks would have at that time could be in the postal system. We went to his home and I met her, this [girl from] Little Rock, Arkansas, about two or three of them, and I was the vice president of the junior branch of the NAACP so I got a chance to meet her. That's how I first got involved in the political area.


Pelka

What year would that be?


Galloway

Oh my! That must have been 1956 or 1957.


Pelka

So your first political activism was in the civil rights movement, as opposed to disability rights.


Galloway

That's correct.


Pelka

What sorts of things did you do as vice president of the NAACP?


Galloway

We were hosting, like I said, we went to meetings and were hosting these people, the black kids that came up from Little Rock. Mostly, I remember going to meetings. We didn't go and do any lobbying or protest or anything like that. That happened later when I was in college.


Pelka

When did your involvement with the National Foundation of the Blind begin?


Galloway

That started when I was in high school. I was in the eleventh and twelfth grade. I got involved with this wonderful woman named Dr. Isabel Grant. She was a Scottish lady with a brogue and all and she was just this little lady who was blind and she was a professor and was very bright. She was our mentor. A guy named Bob Acasta was the president at the time. We would go over to her house and have meetings, and I became the treasurer and started to go to the conventions and started to be aware of some of the issues of our blindness.



69
Pelka

Bob Acasta was NFB...


Galloway

Yes, he was president of our little junior chapter.


Pelka

Do you have a sense as to what year your involvement began?


Galloway

Yes. It was around 1957, 1958 and 1959.


Pelka

Describe that a little bit, your involvement with the NFB, what the NFB was like at that time.


Galloway

The NFB, we used to go to Dr. Isabel, I'm sorry, that's her name, Isabel Grant. She would encourage us to get involved with Braille and to be as active as we want, and to realize--it was mostly psychological--to realize that we could do anything that we put our minds to. She would go, "Now Don, you can do anything that you put your mind to." She was just a fantastic lady. We would get involved with going to the conventions in California. We saw a split. I wasn't real active in terms of the leadership on the state level. Mine was mostly local. We saw the split between the Federation and the American Council of the Blind, they split off from the NFB, and I saw and observed that whole process. That was when I decided that, no, I'm going to drop out for a while because I thought that a lot of it was personal.


Pelka

Do you have any particular recollections of that split? This was probably the late 1950s, early 1960s.


Galloway

Yes. I was at our convention, in California, we were running up and down the halls trying to spy on each other and trying to listen to what was being said. I was a federationist, and we being so young, we didn't know what the hell was going on, we just thought it was very exciting, all of these older people fighting about something. We didn't know exactly what the issues were. We were standing outside of rooms and trying to listen to what was going on. There was a lot of internal problems with the structure, with the people that were running it, and who was going to be appointed to head up the Commission for the Blind in California. It was just real turmoil and excitement, but I didn't really tune into it--I just thought it was fun.


Pelka

Do you recall making a connection at that time, because now you're involved with the NAACP and African American civil rights issues and you're also involved with the NFB and the blindness community, disability rights issues. Do you recall ever making a connection between the two in your own mind?


Galloway

Yes, I did, but interestingly enough, not in those arenas. I made the connection when the Foundation for the Junior Blind used to bring us together after school, on weekends, and on Fridays to have dances and classes and what have you. I was noticing that most of the kids that were a part of that were Jewish kids. Then we start to bring in black kids from Watts and Compton because going every weekend, some of my brothers' and sisters' friends were curious, and we started to go from Compton to these dances, up in Los Angeles. The coming together of the two groups, I started noticing that there was a little apprehension about so many black kids coming to these parties. But Norm was not really discriminatory, and that was the only connection I could find. I didn't make the political connection until later.



70
Pelka

So these were white blind kids who were uncomfortable having a lot of black blind kids coming to these events? Is that it?


Galloway

No, I think the parents were more uncomfortable. These were Jewish kids, and I never really looked on the Jewish kids as being white, I just thought they were Semitic, just another part of the world that we live in. I never looked upon Jews as being white. I know some of them do, but I never did. We didn't really run into a lot of white kids until we went to camp. We went to the summer camps, and you run into a whole different group. But the core group that we were involved with were Jewish kids.


Pelka

How about in the black community, what were the attitudes toward disabled kids, blind kids in, let's say, the NAACP group that you were vice president of?


Galloway

Well, we didn't have a lot of blind kids involved. I was the only blind kid that I knew of that was in it because my brother, I told you that my family is very large, and through my brothers and sisters, I made linkages with the Centennial High School in Compton. Because when I come up, they were in awe, in a way. I guess my education was a little bit better because I was going to the better schools, and I would score A's and B's. Whereas at the high school I was going to, I was getting B's. So I was looked upon as the shining star by the teachers, and the girls were always real friendly. I didn't see any real separation. We didn't go to their schools, other than summer school. We were all shipped out to the special schools. In our community, if you were bold enough and aggressive enough, then you were all right. But if you were shy... They would leave you alone or bring you in, it all depends on your attitude about it.


Pelka

When did you graduate from high school?


Galloway

1958.


Career as a folksinger

Pelka

And what happened then?


Galloway

Well, in 1958, when I graduated, I went to Los Angeles City College [LACC] for a while, and got involved in pledging and that whole social thing on campus. Pledging a fraternity, and stopped going to class. I wasn't doing well in classes; I was just kind of having a ball. Then I got married for about a day or so. That was so traumatic that I dropped out of school for about two years to go and entertain, because I was a folk singer. Then I went and joined a group called the Mississippi Jubilee Singers and traveled all over the United States for about two or three years.


Pelka

You got married for a day? Can you talk a little bit about that?


Galloway

Well, I met this lady, she was a Pennsylvania Dutch woman, very beautiful, tall, statuesque, intelligent, twenty-eight year-old woman, who was the administrative assistant at the Foundation for the Junior Blind. I went to a dance one time at the Foundation for the Junior Blind with another woman. This woman, Lena, decided that I


71
was not going to dance with the woman that I came with. I was so shocked! [Laughs] She just kind of took me over, in a way, and I got involved and she got pregnant. I went to Mexico with my uncle, he took us to Mexico to get married--this is about after a year of courting--and when I came back to my apartment, she called her parents and said, guess what, I married a black man, and he's blind and blah blah blah.

What happened was, her mother had a fake heart attack. They were a very upper-class family in Long Beach, and she had a fake heart attack. Her brother got drunk and went hunting for me with a gun. Her other brother, a medical doctor, arranged with the head of the social services for her to be picked up. They were a good friend of the family, brought her back to Long Beach. They aborted the child, her brother was a doctor. That was basically the last time I saw her. It became so traumatic that I dropped out of school and took a job entertaining, on the road, up and down the road for about two and a half years.


Pelka

How long were you at college that time?


Galloway

The first time, junior college, I went for about a year and a half. Then I dropped out and came back later.


Pelka

You were with the Mississippi Jubilee Singers, and were you involved in politics at that time at all? Any political activism?


Galloway

No, just only our personal experience on the road as four black men in a Cadillac, going up and down Oregon, Washington, all the northwest states. We went into a small town where we weren't served in the restaurant. We made an issue about this on the stage and the kids in the high schools found out about it and they shut the place down. Little incidents like that. Running into road blocks that were set up and being warned that we would be arrested if we said anything negative about the judge or the roadblocks that would give us tickets. I didn't have time to get involved with any political things between twenty-one and twenty-five.


Pelka

Was anybody else in the group disabled?


Galloway

No. I was the only blind person. I auditioned to go on the road as a soloist on the National School Assemblies. However, there was a group under contract that needed a lead singer and so I became the lead singer for this group out of Piney Wood, Mississippi.


College degree in Los Angeles, 1965, and graduate school in San Diego

Pelka

What happened then--you were with this group for a number of years--what happened next?


Galloway

Well, the next phase would be that I decided that that wasn't going to be my life. I didn't see that it was going to take me anywhere. So I decided to go back to school. I came back to LACC [Los Angeles Community College] to get my grade-level up. Then


72

I went to Los Angeles College. I guess it was called State College, at the time--Los Angeles State College, out there in East LA. That's when I got my grades up and got my BA and met my second wife. That's the one, no, I'm sorry, in between I got married again. I got married when I came back off the road. I married a woman named Julia Towns, and we had a boy, Kevin. I was with her for two years. Then I went to state college and I divorced Julia, and June became my reader, interestingly enough. After about a year or so, we became real good friends. One thing led to another, and she moved in with me.


Pelka

What year now would this be?


Galloway

This would be about 1959, 1960. More like, this would be... Junior college was--when I graduated was 1958, 1959 was junior college, 1960 I went on the road... 1961, 1962 I came off the road, got married, went back to school and got my BA degree in 1965. That was the first degree.


Pelka

You said you had a reader, June was your reader--did you pay for this personally?


Galloway

No. The rehabilitation service of the state [State Department of Rehabilitation] picked me up. My counselor's name was Dave Mendelson. He called me a "diamond in the rough," [laughs] and he saw some potential that he managed to pay for, get me into the rehab system. My books and tuition and reading service was paid for by rehab, by the state.


Pelka

What did you study?


Galloway

The first major was psychology. That was an AA. Then I got a BA degree in sociology, and finally, a masters degree in social work.


Pelka

This is California State University in Los Angeles.


Galloway

Yes. That was my BA. Then, it's interesting. The next phase was very interesting with my masters degree. June and I got married on the twenty-fourth of December. We moved and went down to San Diego for graduate school. Of course I was totally involved in the hippie movement. We went down and she got sick, because we used to go to Mexico every year, every summer, spent time all over Mexico. She got hepatitis at the time. I went through graduate school and nursed her, and she got well, and when I graduated, she went back to school. I was going to say something about that period... When I went to graduate school...

When I went to the school, it was interesting. They saw June and I, and I had this huge Afro, and June had long dresses, with the long hair, and the beads and everything. They took us for two hippies. When we went to the orientation classes, people came up to us like, are you two in the right place? They couldn't believe that we could be a part of the graduate class. It was fun.


Pelka

Were you involved with any political activity at this point, in graduate school?


Galloway

Yes. We started getting back involved with the NAACP, mostly. Back to that, and we were involved in a couple of protests, and came to Washington to the March on


73

Washington. They were camping, we stayed overnight on the lawn at the Washington Monument in a tent. Mud City, we used to call it. We got involved with that. One of my buddies I met in high school got really involved in it and he was Jewish. We decided, one summer, we were going to go to Mississippi. Three of us--we were going to go to Mississippi to study film, go and record folk music in Mississippi. Their parents really begged me not to take their kids to Mississippi. So we got a list of all the Jewish synagogues. We ran into some racial problems in Texas--went into a filling station--and got surrounded by a bunch of Texans. They were making racial comments and stuff like that. We decided because of the tension and the danger, we decided to go to Mexico instead. We were referred to an American rabbi in Mexico City. He gave us the address of a small village outside of Mexico City and asked us to deliver several religious items. When we returned home our visit was written up in a local Jewish heritage magazine and we were basically was responsible for introducing this small "secret" Jewish village to the world Jewery.


Pelka

Would you spell that?


Galloway

Venta Prieta. It's fifty miles north of Mexico City.


Getting involved with Berkeley Center for Independent Living, 1973

Pelka

Were you involved in the blindness community at this time? Did you get back into NFB?


Galloway

Well, no. I dropped out of NFB because there was a lot of turmoil at the time. I was totally out of the disability movement during the 1950s and most of the 1960s. I didn't get back involved until I graduated from graduate school.


Pelka

Let's move on to that then. When did you first become aware that there was something called an independent living movement?


Galloway

Well, first I worked with the School of Community Medicine at the University of La Jolla, setting up prepaid health programs in San Diego, and then the neighborhood health movement was happening. I decided to move to get a guide dog up in northern California. I wanted to move to northern California, and I got a job as a Health Department social worker with a masters degree in social work. I started working with pregnant teenage girls and trying to make boys conscious of their roles and responsibilities as a father. That wasn't very appealing to me, to tell you the truth. It's trying to change a whole cultural thing around. I started looking around for other options. I heard of the Center for Independent Living in Berkeley.

I decided I needed to do something that was a little bit more exciting, and involved with the cross-disability movement. I heard of the movement that was being started in Berkeley. In the city I was in. I went over and interviewed with Ed Roberts, and I said, hey, I'm interested in working with the Center [Center for Independent Living]. This was in 1973 and 1974. He said, hey, come on over. We need you to head up the blind component of the center.



74
Pelka

Let's back up just a little. How did you hear about the center? Do you remember?


Galloway

I heard about it because I used to run across a lot of people coming into the city that were in wheelchairs. Also I lived above the Orientation Center for the Blind in Albany. I lived a block away.



[Tape 2, Side A]
Pelka

You were talking about hearing about the independent living movement. You said you were living above the Orientation Center for the Blind in Albany, California.


Galloway

I lived a block away from the Orientation School, and every once in a while I used to go down and visit with the blind kids, the blind adults, actually, being trained to be independent. They told me about another place that was doing similar kinds of activities, but it wasn't a residential facility. They lived at Albany, in the orientation center. I was very intrigued about the community-based approach to independent living. Since I wasn't very happy with what I was doing, I went over to the center, which was located on University Avenue, up on the third floor, this small place, and talked to Ed. All these wheelchair people rolling around, it was exciting, really. Everybody was really turned on to the whole political movement at that time. Ed said, hey, I can give you a part-time job. You're working at the Health Department part time, work with me the other part of the time. You can be director of the blind services. I came in and developed the grant, and got funded for the Independent Living Program for the Blind, within the center for Independent Living, integrating the blind with the rest of the programs that they had there.


Director of blind services and research projects at CIL

Pelka

Specifically, what kinds of things did you do then to begin this integration?


Galloway

One of the things we used to do was integrate the peer counseling approach to independence. We would have blind people coming in. We would go out and do outreach and find where blind people were, and bring them in, and we would have independent living peer counseling programs, that would just be a part of it. It wouldn't be a separate and apart program. It was funded apart from the rest of the programs, but the whole purpose was to integrate all the other services with the blind unit. We would go out and find people and help with mobility and mostly peer counseling.


Pelka

Do you remember any details of your first days on the job? What kind of things happened?


Galloway

Things would happen like, when I first got there, I was fascinated by the repair shops that they used to have. They used to have a wheelchair repair unit, and I used to be very mechanically inclined, I still am. I thought that was a great idea, to have a portable unit that would go anywhere in the community and fix people's wheelchairs that would break down. I had to experience working with people that I couldn't understand initially, like Mr. [Hale] Zukas. I couldn't understand him. Ed would be talking to him,


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and I just couldn't understand, how could Ed be talking to this man, when all I could hear was "mmmm, mmmm".


Pelka

This is Zukas?


Galloway

Yes, Zukas. Then I found out that Zukas had a PhD in Russian history or something. Very bright people. My whole attitude about people with cerebral palsy or speech impediments changed drastically. Before, I had the same attitudes that other people had, that if you didn't speak well, that you were not educated, that you were mentally retarded or whatever. Then I started running into a blind woman named Janet [McEwan Brown]. I forget what Janet's last name was. She ran the newspaper there; she did all the publications; she was totally blind and did all the editing. I started running into people doing all these wonderful things.

This is when my political thing kicked back in. I didn't see very many black people. I was the first black person that I knew of at the center, hired on the staff, full time. Ed was so casual, I don't know if you've ever met Ed, but he's a very casual guy. He's a strategic planner too; he would put people in positions that normally they wouldn't have thought of. He said, "Now that you've got the blind component started, would you be interested in heading up our research team on independent living standards?" So I became the director of the peer counseling research component of the agency.

That was very interesting. I had PhD's working for me, and people that really were very skilled in doing research. That was kind of a bummer period, because I was the only black, and I started bringing black people into the center as drivers and attendants, and bringing in professional types. We didn't have a voice. So I went to the board of directors at the center, and said, we're going to start a black caucus to make sure we get our voice heard. That went over like a lead balloon [laughs], because the attitude was that we were all one, and there's no need for it. I was on the board, some of the staff people were on the board of directors at the same time. I got kicked off the board because of my position.


Attitudes in the blindness community toward CIL and other cross-disability groups

Pelka

Let me back up, let's go way back. You're getting into integrating blind people into the independent living center. What were the main issues, the main problems with bringing blind people into the center, first on the part of the blind people themselves, and then on the part of the center, if you could look at it from both sides?


Galloway

Blind people, it's very difficult to say what blind people felt, but the blind community did not look upon the center as a place that was friendly to them. The blind community were more connected to the blind services, the Lighthouse for the Blind in San Francisco, and the Orientation Center for the Blind, things like that. We didn't have a lot of blind people coming into the center initially. We had a lot of people with partial sight coming in. They didn't identify as being blind, or they didn't identify as being in wheelchairs. There were services available, so they would come in more. They looked


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upon the programs and services of the center as being more wheelchair oriented, people that were more physically disabled. It was very different. [tape interruption]


Pelka

You were talking about integrating the blind people into the CIL and first of all the reaction of folks within the blind community, who at that time didn't really see the CIL as being open or friendly--


Galloway

They still don't--Do you want me to continue with that?


Pelka

Yes, you were kind of in the middle of that thought.


Galloway

Yes. At that time, and still, the blind community didn't look upon the center as being receptive or friendly or meeting their needs. That was the perception. It wasn't terribly accessible in terms of Braille--even today, you go to meetings, and maybe today, you might have Braille agendas. At that time, it wasn't a priority. The priority when I first joined the center was with people with severe physical disabilities. Most of the leadership at the center were quadriplegics and paraplegics. And we didn't feel it was a place to hang out, whereas people who were in wheelchairs, who were severely physically disabled, it was a mecca. They came in from all over the country. I was there, and then they brought in Judy Heumann, people coming in from all over the country. Basically, that was it.

On the center's side of the issue, they were trying to attract and bring in people that were blind, and that's why I got hired, is to try and bridge that gap. That's when I started doing outreach into the community and reaching out to blind people for different types of transportation, different types of services. Even to the point, and the political thing again, was that we started to reach out to the Black Panther Party. I was one of the people that met with the Black Panther leadership through one of their severely disabled members and tried to get them involved in Oakland.


Pelka

I want to come back to that, because the Black Panther Party was involved to some extent with the HEW, the 504 demonstrations, as I recall, that came later on. Before we talk about that, was there a response, first of all in the organized blindness community, for instance the NFB. Was there any kind of official or unofficial response that you recall, from say, the NFB or the ACB toward the Center for Independent Living?


Galloway

I would say, actively, no. It was pretty much ignored by the NFB. It wasn't an issue with the NFB, other than they, the NFB, did not believe in any cross-disability approach to the political approach to advocacy. They believed that the blind should advocate for the blind. The ACB may have had a different approach. They tend to be more prone to collaborate or work with cross-disability groups at that time. I think that's still true. When you find a coalition of citizens with disabilities, traditionally, you have not found NFB members involved. If they got involved, they put themselves at risk of being ostracized from the NFB family. A perfect example of that would be a guy named Roger Peterson, got involved in the American Coalition of Citizens with Disabilities. Because he got really involved with it, to the point of working with them on big issues throughout the Washington area, he got expelled from the national federation.


Pelka

Explicitly because of that, they said, because you're involved with coalition politics...



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Galloway

That's correct. As a matter of fact, he was the president of the NFB affiliate in Washington, DC, and his whole chapter was banned and reorganized and he was kicked out of the federation. He and his wife.


Pelka

What year was this?


Galloway

Oh, it must have been in the 1970s, early 1970s. They reorganized behind that issue. They still do have a strong policy about coalitions. They don't believe in coalitions. You have to be very careful how you get involved in it. As you know, I'm the president of the National Federation for the Blind here, so I have to walk a very interesting line, because of my philosophy.


Pelka

What about the response on the part of the independent living side, from individuals. Do you remember anything about the response toward blind people that you were bringing in?


Galloway

Some blind people were brought in, and as long as you accepted the cross-disability philosophy, you had no problems. But if you started talking about blindness in terms of blindness, you would get a lot of resistence from the leadership of the movement. I kind of walked a double role, in a way. I was involved with the NFB, but I'm also involved with cross-disability issues, because I see the value of both. I see the value of blind people fighting to get what they need as blind people because I do find some of the services being different and some of the needs being different. We're not at the level of survival as the people who are quadriplegic. We started our movement long before the independent living movement. We started our movement in 1940. So just like anything else, you have a vested interest to keep separate and apart. Some of the issues that we work on are very different. I'm not saying that they can't touch base or segue into other kinds of relationships, but we just haven't done that.

When it comes to issues around civil rights, it's a cross-disability issue. Although, it's different in a way because the blind first started the civil rights movement here in DC. I don't know if you know that or not. The White-Cane Law basically talked about all disability groups having the right to use the sidewalks and the public facilities in DC. Although it was specifically for blind, we always included other disabilities, but it would be from the blind perspective. I don't really think that's going to change anytime soon. There are some individuals that are not involved in the blind movement that will join and some individuals that are federationists that will join the cross-disability movement. But organizationally, it won't happen.


Internal politics of CIL Berkeley: starting a black caucus, mid-1970s

Pelka

Staying with the CIL for a bit, how were decisions made at the Center for Independent Living [in Berkeley]. If, for example, there was an issue or controversy, how were things decided?


Galloway

Well, because the structure of the center was built so that staff could also be a part of the board of directors. I don't know if you know it, but staff members could also be a


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voting member of the board of directors of the center. So when issues would come up, it would be discussed on the board level. In my way of thinking, my understanding at the time, the leadership, Ed Roberts, and later on when Judy came in, Phil Draper, people like that, a lot of decisions were made on that level, on the staff level, and the board went along. Or it was made hand-in-hand. A lot of issues, they were the same people, a lot of the board members were staff people. All the leadership were part of the board of directors. It was a coming together of the board and staff on policy issues, but mostly driven by the staff.


Pelka

Was there any sort of tension? Did people see those roles as being different, staff, board?


Galloway

I don't think so. I think that because of the integration of the two forces, it was almost a hand-in-hand, it was a relationship between the board and staff that was very close. I don't think that there was a real friction or tension. Some people thought that Ed was cavalier in his approach to developing programs, because there would be taking out of this program to support that program, and putting it back... That's just a survival thing. When you have a small organization being started and there's funding coming in at different times, of course you're going to adjust budgets around to fit the situation until the end of the fiscal year, and then you would have to balance all that back out. I think people thought Ed was very cavalier in his approach to running the center. I don't think there was any great conflict, that they were going to try to throw him out or anything like that.


Pelka

I want to back up to something you said earlier. You talked about getting kicked off the board because of some stands that you took, or a stand that you took. First of all, when did you become a member of the board?


Galloway

I became a member of the board in 1975, I think it was. Only for about a year. I started a black caucus group, because I wanted to make sure that we would have something to say about how the center was run. It didn't fly too well, because they didn't like the idea of any particular group trying to... That would be like a blind group trying to say that we wanted the blind to be paid attention to more. It was part of the whole attitude that no special group should be dominant. Although the people in wheelchairs, the people that were physically disabled, basically ran the joint. I guess that's why. I don't think it was consciously said, we run things, and we're not going to let you disturb that, but I think we knew that the emphasis was with people that were physically disabled.


Pelka

It was your idea to start the black caucus?


Galloway

Yes.


Pelka

Who else was involved with that at the time?


Galloway

We had one of the drivers who was there, and the guy who ran the parking lot, one of the guys who came in that was quadriplegic, he and his sister came in, he was a part of it. There wasn't a lot of us, like I said before, there was just a handful of us that came in. But we coalesced and came together and decided that we needed some input into this system. So we formed a support group, or a black caucus, and the board didn't like that idea at all.



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Pelka

How often did the group meet?


Galloway

We met maybe once a month.


Pelka

And what sort of issues would come up?


Galloway

Oh, issues like promotions in the system, recognizing that we needed adaptive stuff like Braille agendas at meetings. That was the blindness thing. That we were in a predominantly black community, the city council was predominantly black, the whole area was predominantly black, and we should have more black people involved in it. The movement was predominantly white in the black community, we needed to reach out to the black community in Oakland, get the Black Panthers involved, and any other group that would like to be involved.

It was ironic, you had the center identifying more with the university more than it did with the community. Although it was a community-based organization, most of the funding, most of the openness of allowing funding for the center was because of the black influence on the board, of city council, of the mayor. The whole Berkeley area was predominantly black, and the center was predominantly white. Anyone that came into the center that was black came in on the level of drivers and attendants, not as program directors. That obviously changed later with people like Gerald Baptiste and myself.


Pelka

How were these issues raised? You were the representative of the black caucus and would go to board meetings? What was the process?


Galloway

The process was we would meet as a caucus and then some of the issues would be brought to the board, I would bring it to the board, and it would be shot down. [laughs] That was the process. It would be like a denial. Like, we are not racist, we do not think we need to change our system to accommodate any particular group; basically, be quiet.


Pelka

Can you remember a particular instance, maybe a particular resolution you brought before the board, specific policy change you wanted, and maybe you could take me through the development of the process.


Galloway

A lot of people won't remember the process because we were very weak at the time. We would meet and bring the issues to the board. We didn't bring it in the way of a resolution, we would bring it as a concern. Based on that concern, it wasn't elevated to the level of a resolution, so it was just sort of killed. You bring it in, they pooh-poohed it, and all of a sudden, you find yourself not on the board anymore. I don't know what happened, the dynamics of that, you know. People just got very upset and wouldn't deal with it.


Pelka

How were people selected for the board, how would you get on the board?


Galloway

Hand-picked. I got on the board because I noticed other staff on the board and I asked to be on the board, and I got selected onto the board. I don't know the internal process of that, I don't think they were that organized.



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Pelka

So there wasn't a meeting of the defined membership, there would be a defined membership at the Center for Independent Living and the membership would meet and there would be a list of candidates, nominating committee, any formal process like that?


Galloway

No, I didn't recognize any formal process during that period of time. They may have had it, but we didn't have any big, consumer-based... The workers, the people that worked there, they were the organizers. Because it didn't pay well, and maybe a lot of people were volunteers... So the volunteers and the low-paid staff people made up the community and they made the decision. That's how informally the organization became a consumer-base. The consumers basically volunteered. We had a lot of volunteers. You didn't have any mass meetings of people with disabilities. You had cadres of people coming together and making decisions, mostly just staff and volunteers.


Pelka

How then were you taken off the board? What was the process?


Galloway

All of a sudden, you're told that you're not on the board anymore. They voted you out of the board and you were gone. When my term was up, it was up. It was up for a year, and I didn't get back on the board. I didn't mind terribly, because most of the decisions were not made by the board anyway, they were made by a combination of the workers and the volunteers. The board was just a formality.


Black community reaction to CIL: outreach to Black Panther Party

Pelka

What was your perception at that time? We're talking about the mid 1970s. What was your perception at that time about how people in the black community, the local community, were reacting to the Center for Independent Living?


Galloway

I think that the black community was very receptive to all groups of people. All of Berkeley was very radical at the time. We were involved in a revolution not only with disabilities, but that whole drug culture, that whole hippie thing, it was just open, the city. The city council was controlled by blacks. Everybody was quite open to other groups. If you wanted to start a group in Berkeley, right on. It was a place where new ideas could get a real good start. It was receiving it, it was responsive to the needs, we could go to the city council. For example, there was an effort to restrict people in wheelchairs on one floor of buildings, because of fire dangers. We would go to city council and explain to them that, hey, we take a risk.

In fact, the Center for Independent Living moved from a three or four bedroom apartment to a small unit on the second and fifth floor of a building. The fire department wanted to move us all down to the first floor and the disabled community went and testified and said, "No, we want to take the same risks as everyone else," and they understood it. They said, "You can't restrict people with disabilities on the first floors of buildings." There was a lot of tolerance of our differences in Berkeley. I don't mean to paint a picture that it was a black and white thing in Berkeley. It's just that there was a whole bunch of white people coming into the city that were disabled, and people were kind of like, "That's cool, we'll make space for you." The city opened up.



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Pelka

Did you have a relationship with people on the city council?


Galloway

I didn't. Ed was basically...



[Tape 2, Side B]
Pelka

You were talking about Ed and Zukas being the political folks who would go up to city council when that was necessary.


Galloway

I would go only when my funding was directly affected. If I needed to go and talk to them about our programs or something. You know, I was a manager there, and I would function as a manager. The political stuff was mostly handled by Ed and Zukas and the administration. The only time I would get involved is when I would testify about our programs.


Pelka

Talk about the outreach you did to the Black Panther Party. How did that begin?


Galloway

Well, there was a severely disabled man in the Black Panther Party named Brad, and Brad was our linkage to the Black Panthers. Ed made linkages at the top level with the Black Panthers to get permission to come and be involved with them. We would have Brad, because he had one of these disabilities where his joints would be stiff and his whole body would be rigid. We would go and provide him with attendant care and transportation because we had a small transportation system going. We had a fleet of vans going out to the community. Ed made a decision that he wanted us to get more involved with the Black Panthers and with Oakland. That was our first entry to the black community in Oakland, was through the Black Panther Party. So we would go to some of their meetings and explain our programs. Because Brad, one of their members, had a severe disability, we were quite accepted.


Pelka

Do you remember Brad's last name?


Galloway

No, I don't.


Pelka

What year would this be?


Galloway

This would be in the mid 1970s, 1975, 1976, somewhere around there.


Pelka

Were there formal meetings between Black Panther membership leadership and leadership of CIL, or was it an informal thing?


Galloway

It was kind of an informal kind of thing. It was formal initially, when we would go for the introduction. I suspect it got fairly informal. They accepted our movement as being a part of what they needed to be involved in because they were involved in community support and vice-versa. We would go in and provide specific services to the community. In that way, I don't know if there was a letter of agreement or anything between the two organizations, but we would go in and be a part of some of their meetings. I would go in with Bobby, who was a black woman who was involved with being our driver. Like I said, most of our support staff were black people, driving vans and attendant care, things like that. Although we used a lot of the students for attendant care and drivers too.



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Pelka

How much of a priority do you think outreach to the minority community in Berkeley and Oakland was at the CIL? Was this something that people were very concerned with, or was it sort of a side...?


Galloway

It was a side. The main emphasis was to serve the quadriplegic, paraplegic community. I didn't see a lot of black people being served. I saw a lot of people coming in from Chicago and New York, and all over the country coming in to go to school. You could come into the center, and ninety percent of the people being served were white. I don't think that was deliberate; it's just that a lot of the people that came in were college students. A lot of them who came in, came in looking to increase the quality of their lives. They would come into the community, and there would be accessible places for them to live, and there was a center, the streets were becoming accessible. It was kind of a mecca for all of America, for people to come in, and most of those people that came in were white.

People locally, I don't think there was concerted effort to go and find people with disabilities in the community. They basically came to the center, and we would serve them back into their apartments and what have you. It was almost like a spirit and an intellectual approach to disability issues. You had to be real conscious, and it raised the consciousness of people. I think the consciousness was focused; if you heard about the center, you would come to it. It wasn't that we would go out to the NAACP and talk to them about disability groups or go to the different black groups, churches, and talk to them. That wasn't the emphasis. The emphasis was with the university, with the rehab centers, with the bureaucrats, and with the consumers that were coming into the city.


Pelka

Was there a political linkage that was made? Not political or personal in terms of going out to individuals, but was there a sense, at the center, that disability rights is a liberation movement, or it's a movement of minority peoples much like the African American civil rights movement was a movement. Was there kind of a conscious linkage of that on a theoretical level?


Galloway

Yes. I think because of Ed having a political science background, he understood that the black movement, in terms of black people getting onto the city council, was very similar to what we were trying to accomplish in the disability community. I do think that that was very conscious in his mind. But I don't think that everyone else, most of the people there didn't have that same level of consciousness. I think the consciousness was that we're starting a disability movement, and their main focus was disability. We would draw from the civil rights movement, some of the principles of nonviolence and advocacy and protest. We would borrow some of that, and we would appeal to the black politicians on those levels. For example, the guy who was in charge of HUD [Housing and Urban Development] in the area or the city council, or the mayor, yes, we would do that. But we were not actively, in my opinion, involved in the black movement, in a conscious way, other than to use the similarity to bring about some empathy to our struggle.


Pelka

Do you remember having specific discussions about this, having discussions like this?


Galloway

No. Most of the discussion, most of that kind of thing would come out of the rhetoric that would be made when we made speeches. It would be. Just like the civil rights movement, we're fighting for our rights to become equal and have equal access and


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justice. Our equality would be the ability to get into a building, where with the black community, you were denied based on color, we were being denied based on architectural barriers. That kind of relationship. I don't think it was a conscious effort to connect with the black community.

To be realistic about it, the black community, even now, the organized black community did not really identify with the struggle of people with disabilities in the same way. I think that we, as disabled people, identify with the black movement. But the black movement, in some instance, did not want to include people with disabilities in the movement because they thought it would disperse the power, the emphasis of the culture of black history in the country. In fact, Senator [Hubert Horatio] Humphrey, during the 1973 debate, even back in 1964, when the Civil Rights Act of 1964 came up to be voted on, he wanted to include people with disabilities, and the black organized community said, "No, this is a Civil Rights Bill that is going to have to be limited to the minorities, and at this time, we don't feel that we want to include people with disabilities." So, yes, the emphasis on our side was to try to touch base and identify with the movement. But I don't think the black community at the time, or the black movement across the country identified with the independent living struggle.


Pelka

I'd like to talk a little bit about the role of black women at the center at this time. Specifically, do you have any thoughts on that, or recollections of that?


Galloway

Black women were in the same role as black men. We weren't all terribly involved, other than being an attendant or a driver. Even today, you don't have a lot of black women involved. I think we've gone through a little shift in that, in that most of the leaders, top leaders in our movement are women, but they're not black women, they're white women. Since you brought this up about black, I think the disabled lesbian and gay community identified more with the movement than did blacks, and got more involved in it, and played a tremendous part in the leadership.


Pelka

I was going to ask you about that. You were talking about organizing a black caucus within the CIL, were there other groups that you were aware of at that time in the CIL? Was there a gay and lesbian caucus that people were trying to organize?


Galloway

I'm not familiar with that. I can't really say too much about it. I know there were a lot of lesbian women around, and that's all right, but I didn't see the involvement in a formal way, of the gay community. They may have been, but I didn't see it.


Reflections on Ed Roberts, Judy Heumann, Phil Draper, and Hale Zukas

Pelka

I'd like to talk for a little bit about some individuals. Maybe you could give me some of your early impressions of Ed Roberts. What was it like to work with Ed?


Galloway

Easy. Ed was one of the easiest people to work with because he would listen, and he would understand, and he would act on his understanding. He had a set of belief systems that, if you understood it, he was very easy to work with. He was very, very casual. Ed was not a formal kind of a person. I've never seen Ed in a tie and suit. He


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would wear jeans and T-shirts and his speeches were never formally organized. He would never read a speech, for example. He would speak from his experience. I don't want to romanticize who Ed was. Ed was a strategic planner, he knew how to manipulate, and I don't mean manipulate in a negative way. He knew how to use the resources that he had to bring out the best in you. He would take risks.

I had just graduated with my master's degree, and he appointed me the director of the Research and Demonstration Program, to demonstrate the effectiveness of peer counseling, and it was fairly new to me. He took that risk. I went in, and he put me in charge of a team of people that had a background in research. The guy who headed up the counseling part had a PhD, and it was fairly new to me. But he took the risk to do it because he knew, politically, it would fly, if it had a black person in a responsible position and was doing it. Ed would listen to you, but if he disagreed with you, he made you feel that it wasn't really a disagreement. It was like, let's go this way and check it out, and if it doesn't work then we'll come back and visit it.

I know he was very adamant about cross-disability issues. The only time I've seen him become very adamant about that was when he became the director of rehab for the state. When he had the authority to change programs, and there was a movement in the blind community to set up a Commission for the Blind, and Ed was opposed to it. He believed that the blind should not have a separate unit just for the blind. It should be integrated with all the other services. He took the philosophy of independent living to the state level. That's the only time I've ever seen him very adamant about it. You wouldn't know about it unless you knew... You knew it just by his having the philosophy in the beginning of the independent living movement. Personally, he wouldn't come on strong about it on a personal level. He just assumed that you believed like he believed.


Pelka

When did you first meet Judy Heumann?


Galloway

After I had worked for the center for about a year, Judy was hired to be an administrator, she came as a program administrator for the center, and it was in about 1975. She came out from New York. I think she headed up an action group out there. That's when I first met Judy.


Pelka

Were there major changes when she came in, that you recall?


Galloway

Well, we started to get more organized, and I don't think it was because of Judy, I think it was the nature of our development at the time. We were getting more grants, the center moved from a place up on University Ave. down to Telegraph Avenue. We took over an old British car dealership, where the center is today. We started to expand and get more programs in, more people in, and we needed more organization. That's when she came in, to help pull that together. That's just because of the natural growth of the center. I don't think she was instrumental in being the catalyst for it. I think the catalyst was already started because of the size of the center. It was just getting too confusing and we needed to be more professional in our approach to independent living. Then he brought her in because of her strong advocacy in New York, I'm sure that's the reason. And she's a bright cookie, she's a bright person, a very bright, capable person.


Pelka

How about Phil Draper?



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Galloway

Phil. That's interesting. When Ed became the director of the State Department of Rehabilitation, Phil became director [of the CIL]. Phil didn't have the same level of people skills, I think, as Ed did. He was more... I won't describe him as many people describe him. A lot of people didn't feel that he had the same skill level, let me leave it like that. He was a nice guy, though; I like Phil. He didn't have the charismatic approach to the job as Ed did. He didn't inspire you, as Ed did. He was kind of like a salesman type.


Pelka

You talked earlier about meeting Hale Zukas, can you elaborate a little more on that? What was your relationship with Hale Zukas?


Galloway

I could never understand his speech. I tried, but I always needed an interpreter with Zukas. Ed would be talking to him and understood everything the man said but I couldn't understand him. It was like, we respected and liked each other, and supported each other, but we didn't have any real conversations. I didn't have any deep conversations with Zukas. We would say hello. Is he still living, by the way?


Pelka

I believe so.


Galloway

I really liked him and respected him for his brightness. He was like Ed's right hand person. He was like the strategist with Ed. If you saw Ed, you saw Zukas. They would work hand in hand. The third person that was a very very powerful person in the movement was an able-bodied person, Joan Leon. Joan made up the perfect team because she was the technical person. She was also a strategist. She would be the person that would do the fundraising, I mean, would do the actual writing of the proposal. She knew administration. She's a very strong person in the background for Ed. You never knew it, but it was Joan that was his other side. Zukas was on one hand, and Joan was on the other. Judy would be also there, when she came. That team was almost unbeatable. Then he's got the lawyer guy, John, what's his name? He was his attorney with the State. He was quadriplegic too, I believe he's dead now. Big tall fellow in a wheelchair. The real strategic planners were Joan Leon, Ed Roberts, Zukas. Those are the ones that really stuck out in my mind.


Research and demonstration on the effectiveness of peer counseling

Pelka

I want you to go back to this project you talked about, the research and demonstration program on peer counseling. What was the official name of that?


Galloway

It was called... I could get the papers on that... It was called Research and Demonstration on the Effectiveness of Peer Counseling. It was trying to show how peer counseling from the consumer-based approach worked versus institutional. There's three approaches. One was from a peer counseling approach, one from a professional approach, and one was a private sector approach. They were looking at these three models to see which one would be the most effective. Doing that, we were responsible to demonstrate it and to develop standards around the effectiveness of peer counseling, a person with disabilities counseling someone with a disability.



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Pelka

What had been your experience with peer counseling up until then?


Galloway

Just with the blind. I was involved with that program, but my training for it was heading up the blind program. In that, we integrated the blind with the other peer counseling groups in the center. Before then, my experience was with the Health Department. I worked with pregnant girls, and young fathers and there's a lot of counseling back and forth with that. But mostly, my work was community organizational work. Putting together systems, working with the university and the black community in San Diego and doing research in Latin America. That was mostly my experience. I didn't have a lot of the peer counseling thing other than with the blind component at the center.


Pelka

What did you do in your project, then? What was entailed in your project?


Galloway

Basically, setting up a service delivery program for a model to go and examine everything that we had done. We had a team of counselors headed up by a PhD, a person who headed up counseling and these counselors would work with people with disabilities and we would document everything. Everything would be documented, and we hired a research person to head it up. We had a woman--she was partially-sighted--that worked with the researcher. There was a lot of conflict because they thought they were hot stuff. [Laughs] Then they started moving on me because I wasn't involved in the actual counseling. I was just the administrator for the program, director of the program.

They were on the ground working with it. Two women, again. White women played a very strong role in the movement. They felt that because I was a social worker and I wasn't a researcher, they started to gang up on me. I decided to, what's that expression, "three chairs in the bucket, so I said, fuck it"? So I went on and moved to Colorado and took another job because I was tired of struggling with these two very strong, dominant women.


Pelka

Do you remember their names?


Galloway

I have a mental block on it right now. I like women, don't get me wrong. I'm not putting them down. It's just that I expressed my opinions, and I felt that they needed to consult with me and let me know what's going on and that it wasn't about a male and female thing. It was about me trying to manage the project, and they needed to let me know what was going on, and not keep things between them. They formed a strong bond, and the guy who headed up the program from the federal government, [Herb] Leibowitz, I think that's his name, he didn't like me. I didn't like him, because I thought he was kind of arrogant.

I have a thing about arrogant people that think they're more than what they are. He felt that it was a mistake for Ed to appoint me as the director of the research program. Then he became an ally with these two ladies on the staff, the researcher and the woman who managed the counselors, and it became real heavy. The center developed a position. Too many talented people were coming to Berkeley--they need to return home to build relationships there to expand our movement back home. I took a job with the state of Colorado and moved.



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Pelka

Still talking about the peer counseling research project. Were you aware at that time of peer counseling developments in other parts of the country? Had you looked at what folks in Boston, for instance, were doing, in terms of peer counseling?


Galloway

Yes, I visited Boston Center for Independent Living, to explore what they were doing. We all came together on a quarterly basis, all the grantees came together and shared their programs with each other. Some were using interactive television as an approach to counseling, some were using professional counselors for counseling. Some were using, the private sector, they had a group of them working. I went to Boston and looked at their program. I can't remember all the details of it now. At the time, I was quite involved with learning what was going on across the country in counseling.


Pelka

Did you see a lot... Do you want a glass of water or something? You sound a little bit hoarse.

Okay, we were talking about the peer counseling research program. Was there a lot of influence back and forth between different aspects of the peer counseling movement around the country? Were folks in California pretty aware of what was happening in Boston and vice versa? Or did you see it as kind of separate?


Galloway

No, because of the research projects, we had connections with all of the different centers that were involved with peer counseling. And we had a chance to talk to different people that were doing different approaches to it. We were trying to show the effectiveness of people with disabilities working with others. I think Boston had one that was very similar to what we were doing.


Pelka

Do you remember who you met with in Boston?


Galloway

No, I don't. I did make a trip to the Boston Center for Independent Living.


Pelka

What about the Boston Self Help Center?


Galloway

I think that's the one I went to.


Pelka

Okay. Because the Self Help and the BCIL are two different centers. They interact a lot...


Galloway

I can't remember which one I went to. It was in Boston. It's been so long, I just haven't remembered all those details of it.


Pelka

Sure. Staying with CIL a little bit longer. What was your involvement with the HEW/ 504 [Health, Education and Welfare, Section 504 of the Vocational Rehabilitation Act of 1973] demonstrations?


Galloway

Well, I moved to Colorado as the director of the Governor's Council on the Handicapped. Well, that's how I got involved with it.


Pelka

So that's in Colorado as opposed to Berkeley?



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Galloway

Right. Because when Califano refused to sign the regulations, it was just at the time when I moved to Colorado. Judy Heumann and a lot of those folks organized it in California, I organized it in Colorado.


Pelka

Okay, let's take a break there.


Disabled activism in Colorado: Wade Blank and Atlantis, and the HEW protest in Denver


[Tape 3, Side A]
Pelka

So now you're moving to Colorado in 1977. Do you remember what month you arrived?


Galloway

No, I don't. But I was hired by the governor, Governor [Richard] Lamb was the governor at the time, to head up the Colorado, it was called the Colorado Council on the Handicapped. That was before we started changing names.


Pelka

What did that organization do?


Galloway

They were responsible for developing and recommending policy to the governor and program changes for programs with the disabled throughout the state of Colorado.


Pelka

Was it a large office?


Galloway

It wasn't that large. We had five or six rooms. We had a fairly small staff, there were only about six or seven of us. Janet Dorsey was my deputy. She worked with President [Ronald] Reagan's administration. She's probably still in government as a government official. She was very good about introducing me to the whole disability network that was set up in Colorado.


Pelka

Do you know how to spell her last name?


Galloway

No, I don't. I'm not the world's best speller here. [laughs]


Pelka

What kinds of differences did you see between what was happening in Colorado and what you had been doing in California?


Galloway

California was mostly programs around service delivery, and Colorado was mostly supporting the different components throughout the state around advocacy, mostly architectural barriers and inclusion into the community. Our work was to support the different chapters throughout the state in their advocacy efforts in the community. We would bring information and technical support for them. We would come in and talk to the city council people and to their consumer groups. Colorado was real good because each chapter had different issues, but mostly architectural at the time. Colorado was a very inaccessible place for people with disabilities. Trying to make the city hall accessible, for example, and basic services accessible. Basically to set policy, to help


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them with policy in their local municipalities and then feed that back to the governor so that we could go to the legislators for funding.


Pelka

Where in Colorado were you?


Galloway

I was in Denver, that was my headquarters.


Pelka

Was there major cross-disability emphasis in Colorado?


Galloway

It was all cross-disabilities in Colorado. All the councils were involved in all disabilities. Although the federationists are strong in every state, of course. In Colorado, there was a guy that was a professor over at Boulder, he headed up the Boulder Student Union for the Disabled, was Homer Page. He was very strong with the federationists, but he was also very strong in supporting the efforts of the statewide Council for the Handicapped.


Pelka

Now when you talk about these individual chapters or councils, were these grass-roots organizations, government organizations?


Galloway

It was a combination of both. They had the Councils for the Disabled, at the time, they were called Council for the Handicapped, in each city. Boulder, Greeley, Grand Rapids. All the different cities had their little councils that were set up as a quasi-governmental thing, just like an advisory council, like the Mayor's Council on People with Disabilities. A lot of them were also just consumer groups that would come together and work for the interests of the disabled at their local level and then bring it to the state level. They would share their concerns and issues with our state office.


Pelka

Was there an independent living center at that time in Denver?


Galloway

Yes, there was a group called HAIL [Holistic Approaches to Independent Living]. Now, what does HAIL stand for? It was headed up by some very progressive people, and they had a big center there in Colorado.


Pelka

This is separate from the Atlantis [Community, Inc.]?


Galloway

Yes, HAIL was more of a service delivery group. Atlantis was a transitional living facility. They were, in my opinion, the cutting edge of protest in the state. The fellow who headed that up was a preacher, Wade Blank. We became real good friends, Wade and I, because Wade would be the pusher of issues in the state. When we would take over the legislature for the day, it would be Wade and his group that would come out and be the supporter for it. I would be involved in organizing it, even from the governor's level, I wasn't interfered with in terms of protest. We would go out and do things like take over the legislature around supporting disability funding and issues. Wade would be the one who was there with his crew. He had a captive audience, in a way. Most of the people in his crew, I call it his crew, the Atlantis group, came from the Atlantis home. He took people out of nursing homes and brought them into this group setting where they would have shared attendants and whatever. He also expanded it to advocacy in the community around housing, and access to buildings. He was really very active.



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Pelka

What year would this have been?


Galloway

This would be 1977.


Pelka

Do you remember meeting Reverend Blank, do you remember the first time you met him?


Galloway

Yes. The first time I met him, he came to my office and said, we're going to work together. I'm going to push this group, and you guys can push back, but we're going to do it. It was always the issue, whether an able-bodied person should be leading the political action of the movement. Of course, but he tried to remain in the background. He and his wife, were both involved. He would be the attendant, he would be the administrator, he would be the strategist, and he would bring people together. He would march in with his crew and, like it or not, you had to work with him. I worked with him, I wasn't stupid. I'd come from Berkeley, I knew what he was talking about. In the government, I didn't plan protest, initially, it was always planned by Atlantis.


Pelka

You said a little earlier, something about taking over the legislature, are you talking about civil disobedience?


Galloway

Yes. We would come in and stop all actions at the legislative level because we wanted them to support the Rehabilitation Act [Rehabilitation Act of 1973], the amendments. We wanted them to do more funding. We would bring in loudspeakers and people with disabilities would come in and block up the hallways. We would just give our speeches and what have you. A whole day of protest.


Pelka

This is at the state capital.


Galloway

Yes. The governor never said a word about me being an active part in it. It may have been because he was out of town at the time. The lieutenant governor at the time was a black man and he instantly understood the connections.


Pelka

Are these part of the HEW demonstrations, you're talking about? Would you talk a little bit more about that?


Galloway

We coordinated with Berkeley and the rest of the country to take over HEW. We decided, with Wade Blank and the Atlantis group, to go to the HEW regional office in Denver. We took our sleeping bags, and had food brought in and we took over the building. We started the protest. Now, our protest didn't last as long because it wasn't necessary. They agreed immediately to push to have [Secretary Joseph] Califano sign it. They were very sympathetic to our cause. When we went in with the crew, we had a couple of hundred or so people with wheelchairs and guide dogs and canes and crutches and what have you, coming in. We blocked off the elevators and came in and stayed, I think it was twenty-four hours. After that, they agreed, so we didn't find the need to stay as long. The group in Berkeley probably got more attention in San Francisco than we did. We got media attention, we got the governor to be aware of it, and the city council members and state legislators, we did our part.


Pelka

When you say, we, aside from yourself and Wade Blank, who else do you remember as being involved?



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Galloway

All of the council members, all of the chapters throughout the state that I was involved with sent representatives from Greeley and La Junta, all over the state. We connected with Atlantis, and HAIL, that's the independent living center in Denver, they participated. Mostly it was disabled people involved with that.


Pelka

When you say, HAIL, is it H-A-I-L, or H-A-L-E?


Galloway

Let's go and find that, I think they still function. They still have a center there.


Pelka

I can look that up. Was there a lot of coordination of the HEW demonstrations nationally? Were you in contact with folks in Berkeley and New York?


Galloway

We got the message to do it. Once we did it, we were in contact with San Francisco, but it wasn't a direct line of communication. We just knew that we needed to do the same thing that they were doing across the country.


Work with the American Coalition of Citizens with Disabilities

Pelka

What was your involvement at that time with the American Coalition of Citizens with Disabilities?


Galloway

I was a member of it. With Eunice Fiorito, and Judy Heumann, and all the activists today were a part of that, and I was an active member.


Pelka

What sort of things did you do with that?


Galloway

You know, the first thing that I remember doing with them was the passing of the Rehabilitation Act of 1973 and then the [Education for] All Handicapped Children Act, then of course I got involved with the Federation later. Then the Air [Carrier] Access Act. Those are the things that I got involved with in terms of protest and letter writing and mobilizing people.


Pelka

Okay, let's go back and look at those one at a time, then. What do you recall about the struggle around the 1973 Rehab Act?


Galloway

Well, the 1973 Rehabilitation Act, when that first started, I wasn't totally involved in the movement. I was involved in the coalition, but it wasn't a direct involvement. I was mostly involved in other kinds of health issues and what have you. I started joining the coalition later when we tried to mobilize around the [Education for] All Handicapped Children Act and the promulgation of the rules and regulations. We then talked about independent living funding. A lot of that, a lot of pushing for funding for centers across the country. Then I got involved in the creation of NCIL [National Council for Independent Living].


Pelka

Let's talk then a little bit about the Education for All Handicapped Children Act. What was your involvement with that effort?



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Galloway

Basically testifying, and supporting it through making policy around the act. We would get together and talk about what the act was, and the details of it, and supporting it, and lobbying for it, and educating people around what the act was all about.


Pelka

When you say, we, who do you mean?


Galloway

When I talk about we, I'm talking about people like Eunice Fiorito and the group used to get together on a regular basis to talk about the act. I was just involved with it, I wasn't one of the main actors. I was just one of the members of the coalition.


Influence of Berkeley on the Colorado movement

Pelka

Getting back to Denver for a little bit, what was the impact, or did you see an impact in Denver from what folks were doing in Berkeley? Were people in Denver aware of what was happening in Berkeley, and how was that affecting them?


Galloway

I think the reason I was hired, basically, was because I came from Berkeley. We had a lot of people in the center for independent living in Denver directly linking up to the philosophy in Berkeley, because at that time, Berkeley was the center for us. Also, Lex Frieden in Texas was involved in a lot of the independent living philosophy, with the research and utilization center [Texas Institute for Rehabilitation and Research; now the Institute for Rehabilitation and Research]. He came to it later, but he was also the director of--I think he became the director of rehab for the country at one time. We had linkages with that center because they were doing a lot of the research for the independent living movement, during that period. Back in Berkeley, we would have speakers come and talk to us. Judy was there one time, Ed would come, different people would come through that movement.

It was almost like with a floodgate of water coming through the country. It was like a philosophy that was very compelling. We all looked toward Berkeley as a mecca for that philosophy, although HAIL was very active in getting funding. There was one guy, Barry Rosenberg, that was one of the main funders, writers, leaders of the movement there. He was able-bodied, but he was very talented at finding funding. There was a lot of interaction in terms of, where do we get funding, what's the philosophy, how can we recruit people, how do we do outreach, how do we do peer counseling? So we would always look to the original model.


Pelka

What were the major differences that you saw between how the independent living philosophy movement was developing in Denver and Colorado as opposed to in Berkeley and California?


Galloway

In Berkeley and California, it was more of a mecca, people came in from all over the country. It wasn't a local--Ed was local, but I think it was just a bunch of people coming in from all over the country. Where in Denver, most of the people were from Colorado, were from the community, most of the people lived in nursing homes and places like Atlantis. The difference would be that the real fire in California was Berkeley, the real fire in Colorado was Atlantis and HAIL, which was the center for


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independent living. I think that the movement was more dispersed in Colorado. I think we were more organized on a state level in Colorado than we were in California.

Everybody focused in on Berkeley, in California. I mean, there were centers that developed later in Los Angeles and San Diego and some of those places. The real focus in Colorado was more dispersed, it was all over the state, and we came together as a unit. I know of people coming together in Berkeley from San Diego and Los Angeles, HAIL, the lady that ran the center in West Los Angeles and San Francisco. I don't think Colorado was the same. I think the real fire in Colorado was more cohesive, more together. People felt a part of a unit in Colorado. I think that's because of the governor's council on the disabled working with the center for independent living and working with Atlantis. It was more that kind of a coalition than everybody looking toward Denver. They didn't. The only person that you could say was a real leader in Denver, in terms of protest and things, was Wade Blank, who ran Atlantis. The rest of us worked together to bring all the forces together. It wasn't a charismatic kind of thing going on in Colorado as it was in Berkeley.


Pelka

How about the location itself, between, let's say, Denver and Berkeley, in terms of the geography and climate and things like that. Do you think that made a difference, and how so?


Galloway

Yes. In that in Berkeley, the weather was nice, year-round almost. You didn't have any terrible snows. You didn't have the same level of barriers. I think that the state in Colorado, the people, the attitudes were very similar, if you prove you can do it, they let you do it. But the barriers were greater because there's a lot of mountains, and the weather is much harsher in Colorado than in California. You could get people together inside more. In California, I get the feeling that we were outside more. We were rolling around in the environment more. In Colorado it was people coming together and talking about making their city council accessible, the architectural thing more accessible, making the environment more accessible. Denver was fairly flat, there weren't a lot of hills, but you get outside of Denver, and you have more of a diversity in Colorado. You have the mountains and you have the plains. Going east, you have all the flat areas, then you had a lot of little towns in Colorado. It was more dispersed, but a sense of togetherness when we all got together, we had conventions every year. I didn't see a lot of that in California, it was all focused around Berkeley. And Berkeley had more of a national focus, too. Everyone in the country knew about Berkeley. Where, in Colorado, we knew about Berkeley, but we focused on ourselves more.


Atlantis, HAIL and minorities in Colorado

Pelka

Okay. Let's talk a little bit about Atlantis. Besides Wade Blank, who else do you remember as being significant in that community?


Galloway

Johnson, what's his name, the guy who's heading it now. My mind's gone blank, be he was involved right from the beginning. He was a member of the council, he's a brother that runs the Atlantis group now.



94
Pelka

You don't mean Mark Johnson?


Galloway

Mark was involved, yes. Mark Johnson. And what's the other fellow, there's two or three of them that were quite involved in that movement, that took over the role of Blank. But Blank was the focal point of the movement. He supported and encouraged others to come in and be leaders later, but he was really the catalyst for a lot of the bringing together of people in the state and nationally.


Pelka

What was the relationship between Atlantis and HAIL?


Galloway

I didn't get the feeling that they were that close. I got the feeling that they were two separate entities. There was some question about Atlantis having not an institutional approach to it, but they were second level from it. HAIL was more community-based approach to independent living. Atlantis was a housing and attendent support facility. They lived in one facility. They did community work from that center. But HAIL was all community-based. I don't think that they really believed in having a group home situation. They believed that people should live in their apartments and be served by community-based programs. I think that was basically the difference. I think Atlantis got into buying an apartment and having units in it with people with disabilities in it later. Initially, it was taking people out of nursing homes and putting them into semi-nursing home environments. That's my feeling of it.


Pelka

What was the relationship in Denver and in Colorado between the independent living movement and the minority communities as you saw it?


Galloway

Again, Colorado does not have a large minority community. Well, I guess they do in terms of Mexicans. Like in La Junta, we had Mexicans being a part of that whole group. Most of the people in Colorado that were involved in the movement were white. There was never an issue because there was not any great numbers like Los Angeles, San Francisco and Berkeley. The minority thing wasn't a major issue there. The biggest issue was cross-disabilities. The black community was very small. The Mexican community, they were larger than the black community, the Indian community. You have a couple of reservations there that we used to visit, but it wasn't a really big issue, them being involved. They were already involved with the councils. It was never an issue because the community wasn't that large.


Pelka

Any other thoughts about your experience in Colorado before we move on?


Galloway

I love Colorado because the officials would bend over backwards. Once they got educated to what was needed, they really participated. Every weekend, they would have sports, for example. Colorado is great for outdoor activities like skiing, hiking. They had programs for people with disabilities every weekend. Up at Winter Park, which is a ski resort that was owned by the city. They would have busses that would run up every weekend that would have blind skiers and paraplegic skiers. It was always an experiment. If you had any crutch-users, they would design a crutch for you, a ski-pole that would accommodate you to go skiing. It was all around outdoor activities. I think there was an openness about Colorado, a nice healthy openness. A privacy too, if you didn't outreach to them, they would leave you alone. If you outreach to them, they would help. I like Colorado, it's a very nice place.



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Peace Corps director in Jamaica, 1978-1981


[Tape 3, Side B]
Pelka

I have you down here as leaving Colorado and joining the Peace Corps. Is that right?


Galloway

Yes.


Pelka

How did that happen?


Galloway

Before we get to the Peace Corps, I want to say one thing. Janet Dorsey was very supportive and really did a lot of positive work, she was a disabled woman who was well known throughout Colorado. She was basically scheduled to become the director of the governor's council, but they felt that they wanted someone on the outside, so I got the job. She was very supportive, and I'd really like to thank her for being that way.

Colorado. Two things happened in Colorado that got me in the Peace Corps. One was the director of Action, that's what it was called at the time, the Service to America Program, Action Program, the Peace Corps was part of it. And the treasurer for the state, a guy named Sam Brown, became the director of Action, which the Peace Corps fell under, at the time. The second thing that happened, the director of the Peace Corps at that time was a black woman out of Howard, I think it was, I can't remember her name, so that helped. The most important part, in my opinion, was that the President's Committee on Persons with Disabilities, one of the workers there, it's terrible that I can't remember his name, I met him at a convention under Carter [President Jimmy]. Carter had a big convention around the disabled here in Washington. He came to me and said, you know, you should join, you should apply for the Peace Corps. I said, oh, how come? He said, because they're looking for a person with a disability to become the Peace Corps director in Africa. So he gave me the phone numbers and address of the contact person in Washington, DC. I contacted this lady, and she said, okay, apply, and we will interview you. I applied and went through two or three interviews. They could not understand how a blind man could function, especially in another country.

Then a woman came and became a part of it, and she said, I want you to interview again, and she set up another interview and they hired me. At that time there were no openings for country director. I wanted to go to Africa, and I was scheduled to go to Africa, but when I was waiting, passed the test and waiting for an assignment, the Jamaica and Belize countries became available. They called me and said, would you want to wait for Africa, or would you want to take one of these countries. Since I had lived in Belize during my research time, when I was doing research for two years in Latin America, I knew I didn't want to go to Belize. It was so small, and I'd been there, did that. So I selected Jamaica.


Pelka

Let me back up for two seconds. You talked about being at the White House Conference in 1977. Do you have any specific recollections about that conference?


Galloway

All I know was that it was very massive. It was big. It was the first time I'd been to a national conference where all the major actors in our movement were present. It was big, it was good. I got the feeling that President Carter was very receptive to the idea of


96
inclusion. I liked Carter. That's where I reconnected with a lot of the people that I met throughout the years in the movement. I saw them at the conference and I thought it was a very good conference, by the way.


Pelka

When did you go to Jamaica?


Galloway

I went to Jamaica in 1978, to 1981. I became the first Peace Corps director with a disability, and had the time of my life.


Pelka

Had you been to Jamaica before this?


Galloway

No! When I was in Belize, I heard music coming out of Jamaica, but I'd never been. I have an aunt, that's Jamaican, but I had never been to the Caribbean.


Pelka

And you were the director there of the Peace Corps, what did that involve?


Galloway

That involved doing all the planning for all the volunteers coming onto the island. I had a hundred and twenty volunteers. Their placement, their support, their housing, the training, cultural training of the volunteers coming in, setting up support systems based on problem areas they may have had, in addition to their living allowance and finding places for them to stay and families for them to stay with, and jobs for them to do. It involved being in contact with the different ministry of the country and the prime minister of the country. Being involved with the communities, making sure that the communities support our people, being involved with the media, and then being involved with the embassy.


Pelka

How did your disability affect all this?


Galloway

It didn't in that I had excellent support, excellent Jamaican staff. I had one American, we didn't get along too good, but we had one American. He was the director of programs, a guy named Tim Krieger. Tim was very good with the volunteers. The Jamaican staff, if you know anything about Jamaicans, they're very smart people, skilled people. We had an excellent group of volunteers, and one of the deputy directors came over from the Peace Corps from Belize of all places. He became, the deputy director, and he was good, too. I had an excellent staff.


Pelka

Can you spell Tim Krieger's last name?


Galloway

Oh, he's, where's he from? Not Germany, what's that other country? Krieger would be Dutch, I'm not sure. Tim Krieger, and he was an agricultural specialist and he was good.


The disabled community in Jamaica

Pelka

Did you have contacts with the disability community in Jamaica?



97
Galloway

Oh yes. As a matter of fact, the first thing I did was to include the disabled population, organizations and programs into our planning. We basically worked with the Jamaican Society for the Blind and developed a strategic plan with them. I assigned volunteers to work with them to develop their strategic plan to upgrade their programs, and to move them from a ghetto situation to uptown and to get supported by their government. I got involved with the Jamaican Society for the Disabled, got involved with the Caribbean Council for the Disabled, the Caribbean Society for the Blind, totally involved.


Pelka

What was your perception there on the status of people with disabilities in Jamaica, their relationship to the larger community?


Galloway

They were marginalized in that people with physical disabilities were not terribly involved in organizing themselves. It was done, and also with the blind, was initially done by churches, like the Salvation Army. Then the Society for the Blind pulled away from the Salvation Army and became a separate entity. They were probably the strongest group in Jamaica in terms of organizing and programs for the blind. The other disability groups became stronger later with the support of the Peace Corps and other international development agencies.


Pelka

Had there been contacts, a lot of contacts before this between American disability groups and disability groups in Jamaica?


Galloway

No.


Pelka

Had there been an impact that you could see on the part of the independent living movement in America on what folks were doing in Jamaica?


Galloway

Yes. Because of the linkage, not because of me, but because of my position, I had a chance to get volunteers involved in it. We had volunteers involved with the deaf community as teachers, we had volunteers working with the Society for the Blind, we had volunteers working with the disabled organizations throughout the island. The independent living movement was very strong with the blind population. I was mostly involved with the blind because I wanted to learn how to move around the country without support. The best way to access the society is to work with the people in that society. So I worked with the blind, and let them use my house for parties and things like that, functions. The philosophy came through my office and the Society for the Blind. And I must say that the Society for the Blind was much more progressive than any other disability group in the country.


Pelka

You said you had volunteers working, do you mean American Peace Corps volunteers that you assigned to the different communities?


Galloway

Yes, that's correct.


Pelka

Was there something like a cross-disability rights movement in Jamaica at that time?


Galloway

Not that I know of. It was very loosely organized. The efforts from the cross-disability thing--no, I would say not. I think they were pretty separate. Then employment came in, the Swedish or the Danish supported a workshop for the disabled, and that would be some blind people in there, but a lot of people in wheelchairs, physically disabled would


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be involved. There were not a lot of cross-disability things happening. The blind looked out for the blind and the deaf looked out for the deaf, and physically disabled and mentally ill, god help them, they didn't have a chance, they would be institutionalized instantly.


Pelka

This is the same question that I asked about Denver and Colorado...


Galloway

Can we take one quick break?


Pelka

Sure. [tape interruption]


Galloway

On this cross-pollenization of the independent living movement in Jamaica, I brought a couple of people down. A couple of people visited me from Berkeley that were in wheelchairs, and because of the inaccessibility of Kingston, for example, it was very difficult for them. Some of the upper class people with disabilities had accessible cars and what have you, but the average disabled person in the wheelchair found it very difficult. Especially if they were very poor, they would be in these little shanty towns. They called them corrugated communities and gullies and they would be totally isolated. Later on, we had a representative from Berkeley that talked about sexuality and the disabled, and they came down and did some training with two of the groups. I just wanted to bring that in.


Pelka

Do you remember who it was from Berkeley?


Galloway

Oh, she was the wife of one of the leaders back there. I could find out.


Pelka

Okay. I wanted to ask you, you talked just now about the corrugated communities and gullies and things like that, and I've asked you before about how the geography, the locale in Denver had affected the movement, as opposed to Berkeley, and I want to ask you the same thing about Jamaica. How did the country itself affect how people with disabilities organized and put the movement together?


Galloway

I think that because of the terrain of Jamaica, it's very mountainous, the only region that would be flat would be the coastal region, the tourist area, Montego Bay and Ochorios, and around the perimeter of the island. But the center, the capital, is located at the base of a hill, it's all hilly. Nothing is flat in Kingston. Because of that, the blind community would be the first to organize themselves because of their mobility. The people with physical disabilities could not get around, especially if you were poor. The majority of the people were poor--and the poor people of Jamaica lived in shanty towns and broken sidewalks and holes and gullies and when it rained, the streets became flooded. If they lived in a gully, in fact, I had to take vehicles down to the rim of the gullies. For example, my driver took me to meet some people who lived in the gullies. All of a sudden, we turned off the main road and it was like going straight down the side of a hill. No roads or anything. I was like, oh, my god!

They had to move the corrugated fences away to get one woman out of her dwelling, or "yard" they called it. The yard would be the living space that people had, which would be a corrugated area no bigger than a kitchen. Right outside these little shanty towns, are these gullies which would be a twenty foot drop, down into where the runoff of the rain would go. People would live right on the edge, or the lip of the gullies and would


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travel throughout the city through a network of these gullies. On the rim of these gullies you would have these shanty towns, and sometimes you would have very exclusive communities. You had people living right behind very fabulous houses, on the side of the gullies.


Pelka

You returned to the States in 1981?


Galloway

Yes.


Working for minority community access to disability politics

Pelka

Did you notice any differences when you came back between what was happening in independent living and disability rights from when you left to when you came back?


Galloway

Yes. When I came back, it was the decade of the disabled. The movement spread nationally, and internationally. When I came back, Mary Jane Owen was heading up the International Year for the Disabled for Action and I headed it up for the Peace Corps. I noticed that the centers for independent living were spreading all over the place. It was just mushrooming all over. That's when I got involved again in the independent living movement in that the standards were being set. The national structure was being formulated. The international groups started to happen, Disabled Peoples International started to come about.

The movement was growing in leaps and bounds. When I left, the focal point was Berkeley, and starting to spread nationally. When I got back, it had spread throughout the states, in the communities, in the smaller cities in the states. There were coalitions or associations or groups and centers for independent living in the states supported by the state legislatures. Before, it was mostly supported by the federal government, and then the local governments got involved and started to fund a lot of the projects. I saw the movement really expanding. That's when I got back involved as a director for the Center for Independent Living in DC.


Pelka

It was around this time that you also became involved with the National Association of Minorities with Disabilities?


Galloway

Yes.


Pelka

Okay, talk about that a little bit.


Galloway

We felt, and we still feel this way, but we haven't had the ability to organize it, that because of the lack of involvement of Latinos and blacks and Asians in the movement--this was mostly a middle class white movement, there were not a lot of attempts to include us into the programs in a real meaningful way. I got involved on two levels, in the National Association of Minorities, that was out of Wisconsin, I think it was, as one of the board members. The reason it failed was that an able-bodied black man, in fact, he was a state worker, became the director, and things just came apart. It didn't work too well. Because of the lack of funding, and lack of organization.


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So I took my energy and put it into trying to make NCIL [National Council on Independent Living], the national association of centers for independent living, more responsive. So we first started off with the minority caucus of citizens with disabilities, as minorities with the national office. But we changed it to a cultural thing, caucus for cultural affairs, or caucus for people with different cultures and that was a struggle. They didn't want it, there was a big struggle. And then I had to compromise in the sense of changing the name and changing the content of it. They gave us the right to organize and to appoint our own person onto the board of directors of the national board of NCIL. Now they are trying to change that, of course.


Pelka

Let me pause for a second... Before we get into the NCIL, I want to back up and go back to the National Association of Minorities with Disabilities for a moment. Who were the people involved in that, as you recall?


Galloway

I remember the Texas Association of Latinos were involved in it. I remember there was a big coalition of minorities in Wisconsin that really started it and funded it. Some of us from Berkeley were involved in it. People from Chicago, a guy from Boston was involved with it. All over the country, we had representatives coming in. Again, the biggest problem was funding, and getting people together, communicating on a national level.


Pelka

Now was this a coalition of organizations that came together, or was it a group of individuals that formed the organization? What was it like structurally?


Galloway

Structurally, it was a group of minorities with disabilities, it was organizations, the Indian population, the Latino population, the black population. The Asians were really not terribly involved. They were subgroups of bigger groups throughout the country. For example, the Minority Caucus of Berkeley, the group in Texas, the Latino coalition of Latinos in Texas became a part of it, the tribal groups of the Indians, the local, indigenous people were involved in it. Then you also had individuals that were involved in it.


Pelka

So this is a little different then from say, a group like the American Coalition of Citizens with Disabilities which was pretty much entirely a group of, as I remember, the ACCD, it was representatives of organizations would come together representing those organizations and meeting as a coalition. This was different in the sense that you had some representatives of organizations, but then you also had individuals who were there basically on their own behalf.


Galloway

Right.


Pelka

Was there a board of directors, or how was it?


Galloway

We had a national board, we used to get together every year to try to access these bigger organizations. I, at the time, headed an organization here called the Blind... What was it called? Visually Impaired People of Color, and we were a part of it. It was organized on an organizational or individual basis, coming in. It was headquartered in Wisconsin.


Pelka

This is a cross-disability group?



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Galloway

Yes.


Pelka

How large a group was it?


Galloway

It varied from meeting to meeting. Our group was about, the core group was about twenty to thirty people. Again, it was funded by the group in Wisconsin, and when they defunded it, and put this other guy in charge of it, it just fizzled.


Pelka

Do you remember what the name of the group in Wisconsin was?


Galloway

That would be easy to find, it was the main coalition of the citizens of Wisconsin.


Pelka

Okay, so it was the Wisconsin branch of the ACCD?


Galloway

No, they had a separate group in Wisconsin, it was very strong.


Pelka

Okay. How often did the group meet?


Galloway

I met with them every year for about two years, three years.


Pelka

Do you remember some of the issues that were discussed at meetings?


Galloway

Yes. One of the main issues was the lack of involvement of people of color in the independent living movement and how we could best address that issue, by forming our own group and trying to impact these other groups. That was mostly how we could get involved in the hiring and service delivery programs that were being developed nationally.


Pelka

Was there a professional staff?


Galloway

Initially there was, it was a staff that was hired out of the department of rehab in Wisconsin. And that's why it failed. Once they got defunded--they were able-bodied people that were initially involved in it. Because their interest waned, we didn't have the resources to keep--most of our money came out of Wisconsin.


Pelka

How were decisions made, I mean--how did you all decide which issues to take up and what agenda items to pursue?


Galloway

What happened initially was the two or three people that were staff that were hired by rehab to help coordinate this, would bring the issues to the floor, we'd discuss them, and then on the floor, we'd bring up other issues. Mostly again, the paid staff would be the ones who brought policy to the group. I'm going to take a break.

You're right to say that a lot of our organization was dove-tailed onto other organizations. For example, the minority caucus of the multicultural caucus of the NCIL, we would meet when NCIL had their national conference. The Coalition of Citizens with Disabilities, when they would have their group, we would go off on the side and caucus. It was always a part of a larger picture. We never had enough funding to mobilize and do our separate thing. It was always in connection with another national organization.



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Pelka

The National Association [of Minorities with Disabilities] was started in 1981, was it?


Galloway

More or less, yes.


Pelka

When did it dissolve?


Galloway

About 1985.


Pelka

Okay. What would you say were the major accomplishments?


Galloway

I don't see any major accomplishments because it was never really properly funded. We had Chief Thundercloud or something that was the director of it. He was not a strong leader. We never had the organizational and funding base that was needed to really make it an effective body.


NCIL activism and the minority caucus

Pelka

Moving on to NCIL. How did that begin?


Galloway

When I came back from Jamaica, as I mentioned before, the movement was spreading like wildfire. It was moving all over the country. A group of the same people that were involved in the coalition start to form another organization called NCIL. It evolved from the centers for independent living, addressing the coordinating funtion for all centers.


Pelka

Now when you say involvement in the coalition, you mean ACCD?


Galloway

Yes. ACCD, the independent living movement, all of those people are the same people, like Judy Heumann, those people, all the same people, coming together, and I think Justin started to get involved during, well I first met him in 1981, 1982.


Pelka

Justin Dart?


Galloway

Yes. All those people were at the table throughout the movement. We just kept changing names because of the funding base.



[Tape 4, Side A]
Pelka

You were talking about, basically the same group of people getting together, folks who had been involved in ACCD and on the national level getting together and beginning to pull NCIL together.


Galloway

Yes. They were the same group because I think the funding base was the reason why the movement hung together. During this period, the ACCD [American Coalition of Citizens with Disabilities] was funded by the federal government and when that funding fizzled, the organization fizzled. Many of those same people then transferred over to NCIL. NCIL became the strong base for policy and program direction. They


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organized, got funding... When we first started NCIL, we didn't have a headquarters. We had started with a convention, and bringing all the centers together to talk about their programs and what have you. Then we formed a board of directors, and came together. It is the same process which the statewide independent living council is going through. The main issue was to have funding coming directly to the centers instead of going through the designated state unit from each state. That was one of our main goals, was to control our own funding base. Once that got started, we decided to set up an office and hire a staff and really start doing it in an organized way.


Pelka

When did you begin working on a minority caucus within NCIL?


Galloway

Immediately. I was the director for the Center for Independent Living starting in 1982. I didn't see very many of us, and when we started to get together, we started talking about the lack of concern that inclusion of people with disabilities that were minorities. So I got together with a couple of others, I can't remember who they were, but mostly fought a one-man battle almost, trying to get the NCIL board to accept a minority caucus. They were very opposed to it initially because they felt that it would splinter our organization. They didn't see the logic that it would strengthen, they thought it would weaken. Because they needed my vote on other issues, we parleyed together. They said, okay, you go along with this--this is unofficial now, this is stuff on the side--if you go along with us to support our funding base this way, we will support you having a structure within our structure to address the issues of minorities with disabilities.

I first thought of it as a minority caucus. They made it a multicultural caucus for the purpose of including themselves as another cultural group. We didn't exclude them, we just called them "others", but now the multicultural thing is being changed, now, even again. Initially it was to have a way that we could always have a person on the board of directors, elected, selected by us, to represent us on that board.


Pelka

I'd like to back up just a second. When you said this was on the side, how did you mean that?


Galloway

I meant that when there was some issues that I didn't take strong positions on, a couple of the members pulled me aside and said, hey, you seem to not be very strong about this issue. If you support us on this issue, we'll support you on your issue. And that's how I got support.


Pelka

Do you recall what their issues were?


Galloway

I think the issue was basically state funding. The first one was setting up a network for independent living on the computer. I wasn't that aware of what was going on in that area, the value of web pages and stuff like that. That was one thing. I remember a guy named Roland Sykes from your part of the country, wanting to set up a web site for the disabled, for independent living. The other issue was state funding. Instead of having it directly funded through the designated state unit, RSA [Rehabilitation Services Administration], it would be funded directly through the centers. I had no opposition to it, but they weren't sure of the vote, there was a vote on that kind of thing.


Pelka

Was the computer thing, was that Fred Fay by any chance?



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Galloway

I know Fay, no this guy's name was... I keep flashing on my names. Roland? What's Roland's last name. I used to call him "Rollin'". I think he's from Connecticut. And Carr was another guy.


Pelka

Charlie Carr?


Galloway

Charlie Carr, he was... And the guy who was opposed to it--there were two people that were really opposed to the idea, and that was a woman in Los Angeles, June Kailes, she has a consultant firm now. And the guy that runs the RSA for Alaska, they were really opposed to it.


Pelka

They were opposed to the computer thing?


Galloway

No, opposed to having a minority caucus. You know, racism can cut funny ways. They just couldn't stand the idea of having a minority caucus, having their own budget and having their own representative on the board. They were opposed to it. So I had to go and do some compromising and do some lobbying, and they finally said yes.


Pelka

In a way, this duplicates your experience at Berkeley, in the sense that the initial reaction was to say, this is divisive, we shouldn't be organizing into separate groups like this. Is that how you see it? Did you see parallels?


Galloway

Yes, I did see parallels. Always in the IL movement, they talk about inclusion of minorities, but when minorities get together to create a mechanism to include themselves, with us having some sort of control on it, they seem to be opposed to it. Especially when it comes to funding. The compromise at the time was, we'll allow this to happen, but all the funding must go through the NCIL office, we couldn't have separate funding streams. I can understand it from their point of view, but it really limits us a lot, we can't go after certain funding, it has to go through their mechanism.

It's been consistent. I think it's also fear that we're getting more power than what they really want us to have. This is the other way. Right now, for an example, they're trying to change the way that the minority caucus, the multicultural caucus, multicultural does recruiting. They're saying now that they want the multicultural representative on the board to be selected by the membership at large. We said that the representative should be done by the members of the multicultural caucus and appointed onto the board. They're saying the general membership should do it now. So it's the same issue, twenty years later. It's coming back to the same basic issue. Who's controlling what here.


Pelka

What kind of impact has the NCIL caucus had, do you think, on the development of the independent living movement across the country?


Galloway

The minority caucus? I think it had a tremendous potential for positive change. One major influence it does have, is that, at least, most of the centers now are talking about doing an outreach into the minority community. It's a conscious effort to try to do that. May not be very successful at it, but at least they are consciously talking about it. I think that's because of the minority committees. The other part is to understand the dynamics of disabilities in minority communities. How do you approach that, what are some of the constraints? Why don't you have more Asians involved in this movement? How come the Latinos are not terribly involved? How come blacks are still


105
marginalized? What are the psychology of a minority, with a double kind of a disability, in a way? I think they're real conscious of that now, and trying, sincerely trying, to include everybody into the movement. I think that's a direct response to the minority caucus, or the multi cultural group impact.


Disability rights and other political involvement

Pelka

Kind of flipping it around now, how do you see the impact of the disability rights/ independent living movement on the African American civil rights movement?


Galloway

Interestingly, years ago, there was an effort--you know the Civil Rights Act of 1964 comes up for a vote in the Congress periodically. It's not something that's there and you think it's there for the rest of the life of the country. Every ten years or so, every five years or so, the civil rights bill comes up for review.


Pelka

This is the Civil Rights Act of 1964, you're talking about reauthorization?


Galloway

Right, reauthorization of it. Several years ago it came up and it looked as if they were going to try to gut it. They needed other coalitions to come in to support. So the black community really needed to have the disabled community support the civil rights bill, and we came together. I remember testifying in supporting the civil rights bill from the perspective of the disabled movement. We came in and basically helped them to bail--not to bail--to help them, to help us to--it's hard to call them and us, because I'm a part of both groups, so I'm bouncing back and forth, so you understand when I said them and us. We had to go in and help support the reauthorization of it. It was successful. And now they are beginning to understand that we needed to support each other. So the Urban League, they are now involved in it, the NAACP is now talking about bringing in minorities with disabilities. It's that kind of awareness that's beginning to happen between the different groups. The women's movement went through the same thing. The women with disabilities went to the women's group with their issues and the same process is happening.


Pelka

We're going to move on to something else here, but before we do, are there any questions about what we've been discussing for the last three hours or so, particularly about this interaction between African American minority organizing, independent living disability rights organizing, that interaction and relationship. Are there any aspects of that that we haven't talked about that you think we should bring up?


Galloway

Well, the only aspect that I think we need much more training and awareness of the Americans with Disabilities Act, in the minority communities. I'm not just talking about the officials, government workers and people like that, but the average person with a disability in our community does not understand the dynamics of the Americans with Disabilities Act. We have a misconception of what Title I is all about, for example. We think that they must hire us because we are disabled. That's not the case. There's a lot of education that needs to be done in the minority communities about our rights under the Americans with Disabilities Act and under the [Education for] All


106

Handicapped Children Act, which has been changed to IDEA [Individuals with Disabilities Education Act].

We don't quite get it yet. Our community is still way behind in the understanding, and inclusion, with these two major pieces. The independent living movement, also, we're not involved in that process in a great way. We always get people coming in and want to do for us, you know. Especially the independent living movement. The disabled population here in D.C. for an example, the director of it is an able-bodied guy. They start to hand-pick the boards. They don't get the kinds of people that will really go out and do education in the community about these major civil rights acts of ours.


Pelka

What was your role in advocating for passage of the Americans with Disabilities Act [ADA]?


Galloway

Well, I was involved initially with Senator Owen. He had a subcommittee on ADA and I was involved on that subcommittee and helping to determine the areas that we were going to put into the act, of course. I was involved in the training, I was trained as an ADA expert, I was trained in that by, what's that group called... We called her the General.


Pelka

Patrisha Wright? DREDF. Disability Rights Education and Defense Fund.


Galloway

Patrisha Wright, DREDF trained me to be an ADA technical person. All my jobs for the last fifteen years, and I've had two major jobs like that, has been in providing technical assistance and making agencies accessible to people with disabilities. So I've been involved in the policy end of it and the implementation of the ADA.


Pelka

When you were talking about Congressman Owen, was that the Task Force on Empowerment... I forget the full name of that. [Task Force on the Rights and Empowerment of Americans with Disabilities]


Galloway

Senator Owen, yes, the Task Force. I was a member of that.


Impact of September 11, 2001

Pelka

Again, jumping to a very different topic. I wanted to ask you about your reactions, the impact that the events of September 11 had on you. We had talked earlier and you said you had a very particular story you wanted to tell about that. This would be the place to do that.


Galloway

Yes, well. First of all, I'm appalled to think that Americans are not aware of why September 11, why that happened. We have an enormous amount of power in our military and we have done a hell of a lot of damage to people, including making a whole lot of people disabled, behind our military action in Vietnam, with the CIA [Central Intelligence Agency], all over the world. We have supported groups to take over nations, we have created situations in Africa. Not only we, but with our interests, we have done a lot of damage to create a lot people with disabilities and a lot of ill will,


107
with people that just don't like us because we're not pulling our fair share. In the United Nations, we did not pay our fair share because we wanted to manipulate the body to do our will, and we have held back major funding of some programs within the United Nations. I don't understand why people don't understand that we're not the most loved people. We have the concept that we have given more than anyone in the world. Proportionately, that's not true. But in mere dollars, you might say that. But proportionately, based on our wealth as a nation, we have not given our fair share.

Now when this thing went down, a lot of people were killed, okay. But a lot of people have been killed over the years in other countries. We have always taken our aggression to other countries, it's never touched us here. When it did touch us, it affected us in a very particular way. Americans now want revenge and control of the world. There were a lot of disabled people in that building that got killed because of our evacuation policies. I think we have to really look at our evacuation policies throughout America to include people with disabilities, in a real way. Don't include us by putting us in a room, so-called a "safe room". Some people might say it's all right. But you talk about explosions, going to a room is not going to save you. I think we need to really look at that. There were a lot of people killed because they took them to a safe room and couldn't get to them. The ones that saved themselves were the ones that left the building. That blind guy, he left. But there were other people that were left that were in rooms that were so called "safe rooms" that lost their lives.


Pelka

Okay, this is the World Trade Center you're talking about. You're saying that we have evacuation policies where they designate certain rooms as safe rooms and people with disabilities are supposed to go to a room? Is this is a fairly widespread policy?


Galloway

Yes. Yes, that's the policy. For fire and for explosions. Now for fire, it may be a little bit all right because they will initially go to that room and they will have communications to that room, and the first place they would go is to that room and get you out. But if you are on the ninetieth floor, that may not be the best way to go. They used to have, when I was doing some evacuation planning during the 1980s, they had these vehicles that you could put a person in, and it would be on tracks, and it would go down the stairs. You could just pull it, and it would go down the stairs. You could take a quadriplegic down, on this track-like thing. Or they had these chairs that a man in the front and a man in the back could grab and you could take the person down the stairs.

They have stopped that, basically. I know in D.C. they have stopped that. They've said that that is not safe, and it really will block up the hallways and block up the stairwells. Well, you know, people are not supposed to be running anyway. It's supposed to be an orderly way to get out. You're not supposed to go helter-skelter all over the place. Now what they have done, they have created these so called "safe rooms" and as you know, they cut off the elevators. If you want to come down, the only way you're going to come down is through the stairwells. If they are saying, you're not to use the stairwells if you're in a wheelchair, and using a device, then you need to go to a safe room, you're creating a situation where a lot of people in the future will be killed. If a terrorist wants to blow up a building, you're not going to have time to go to those safe rooms and get those people out. Those rooms are not fire proof. If you have a major fire, that room is going to be like a bakery. So that's my concern about these, when I first heard the explosion and knowing the brothers and sisters were going to be put into these rooms to


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wait for the firemen to come and get them, they're going to be the last people to get out, not the first.


Pelka

Did you have any personal connection with what happened, anyone you knew?


Galloway

One guy that I knew that was blind, that was in that building, he got out. My nephew is vice president of an investment bank. Luckily, he wasn't there. I don't know anybody personally that was in that fire. The other thing, like I was saying, the reason I brought up this thing about our involvement with war is that when we go and drop bombs all over the country, other countries, we are creating disabilities, people with disabilities. We are creating huge numbers of people with disabilities. For every person that dies, there's like two or three people that become disabled. If we are doing that on one end, we should be very conscious of what we're doing and very supportive of any programs internationally for people with disabilities. We haven't been very supportive.

We are now beginning to understand that through the United States International Council on Disabilities that's been created in the last four to six months. Disabled Peoples International, groups like that, WID [World Institute on Disability], Mobility International. We're beginning to mobilize internationally. But we have, I think, a tremendous responsibility to recognize, at least that when we go to war with countries, we're invading countries. I know that people feel we want revenge and all that stuff. But we have to recognize we're creating another kind of a problem. We're adding to our population, and we're not supporting those people after they become disabled. And that bothers me a lot.


Pelka

Do you have any final thoughts about everything we've been talking about? Anything to add at this point?


Galloway

Well, I think the disabled movement can only go forward in a real positive way if we include all peoples with disabilities from every ethnic group and understand the dynamics of what the attitudes and values of those cultures and how to plan a strategy of getting the service that's available to most of the population to the minority groups. In the next twenty years, the dynamics of minorities are going to change. Latinos, Asians, and blacks coming into this country will start to make up the majority, at least forty to fifty percent of the population. If we don't start actively recognizing the fact that disabilities occur proportionately higher in these minority groups, and until all services are equally distributed throughout our society, we really can't truly say we have a disabled movement. I would like to see efforts in the centers for independent living, all of the political groups that we have set up to really actively, truly include people with disabilities, all peoples with disabilities into the movement.


Pelka

Well, thank you very much. I really appreciate you taking the time to talk with me and answer all of these questions. It's been a real pleasure for me...


Galloway

Can I give you a piece of pie or something to eat?


Pelka

Sure. [laughs]


Disability Rights and Independent Living Movement Oral History Project

David Konkel

First Blind Services Coordinator at the Physically Disabled Students' Program, UC Berkeley, 1970; Founding Member of the Center for Independent Living in Berkeley

Interview conducted by
Fred Pelka
in 2002

Regional Oral History Office
The Bancroft Library
University of California, Berkeley
Copyright © 2004 by The Regents of the University of California

Foreword

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.

Copyright and Use Restrictions

All uses of this manuscript are covered by a legal agreement between The Regents of the University of California and David Konkel, dated June 24, 2003. 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, The Bancroft Library, Mail Code 6000, University of California, Berkeley, 94720-6000, and should include identification of the specific passages to be quoted, anticipated use of the passages, and identification of the user.

Citation

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

David Konkel, First Blind Services Coordinator at the Physically Disabled Students' Program, UC Berkeley, 1970; Founding Member of the Center for Independent Living in Berkeley, an oral history conducted by Fred Pelka in 2002, in Blind Services and Advocacy and the Independent Living Movement in Berkeley, Regional Oral History Office, The Bancroft Library, University of California, Berkeley, 2004.

Tape Guide

  • Tape 1, Side A 117
  • Tape 1, Side B 127
  • Tape 2, Side A 135
  • Tape 2, Side B 143
  • Tape 3, Side A 152
  • Tape 3, Side B 160
  • Tape 4, Side A 168

Interview History--David Konkel

David Konkel was selected to be interviewed for the Disability Rights and Independent Living Movement oral history project because he was a staff member at the Physically Disabled Students' Program (PDSP) at the University of California at Berkeley beginning in 1970, and because of his role in the founding of the Center for Independent Living [CIL] in Berkeley. His subsequent involvement with CIL was short-lived, but his contributions as a grant writer and spokesperson at the very beginning of its existence was of crucial importance in getting both the center and the broader independent living movement off the ground.

David Konkel was born in 1949 in Oakland, California. A car crash the summer after he graduated from high school left him totally blind. He became involved with the National Federation of the Blind through the residential rehabilitation program in which he was enrolled after his accident and went on to found the NFB's northern California students' chapter.

Konkel's involvement with the PDSP began when he moved into an apartment building next door to its office. "I ended up going over there and visiting the place and right away met John Hessler." It was Hessler who asked Konkel to join the staff of the PDSP. Konkel, in 1970, "became the first blind person they'd hired," helping blind students at UC Berkeley become oriented to the campus, and finding ways to accommodate their need for readers, accessible textbooks, and so on.

Eventually it became apparent that the concept of people with disabilities taking charge of their own lives--the essence of independent living--had to be broadened to include more than the students at UC Berkeley. It was then, in 1971, that Konkel, along with Ruth Grimes, wrote the first proposal to fund what would become the Center for Independent Living. Proposal in hand, Konkel flew to Washington DC to meet with the head of the federal Rehabilitation Services Administration, convincing him that independent living was both needed and possible. A pivotal actor in founding the CIL, Konkel then became one of its first staff members, broadening his role from working with students to doing outreach to the blind community in the San Francisco area.

Konkel's involvement with independent living ended when he decided to devote his full attention to his graduate studies. Today Konkel is an analyst in international economics for the U.S. State Department.

I interviewed Mr. Konkel at his home in Washington DC on April 21, 2002. Mr. Konkel was sent his oral history transcript for review and returned it promptly with only one slight change to correct a factual inaccuracy.

Fred Pelka
Interviewer
October 2003

Florence, Massachusetts


117

Family background and growing up in California, 1949-1968


[Interview: April 21, 2002 ] [Tape 1, Side A]
A guide to the tapes follows the table of contents. Pelka

This is an interview with David Konkel on April 21, 2002. I'd like to begin by asking where and when were you born.


Konkel

I was born in Berkeley, California. It was actually a hospital in Oakland, but my dad was going to Berkeley [University of California, Berkeley] at the time. I think my parents lived in Richmond, as a matter of fact. It was January 7, 1949.


Pelka

Okay. And what were your parents like? What did your father do, for instance?


Konkel

He was a life insurance salesman, and my mother worked as a secretary.


Pelka

Okay, do you know anything about your family background, about your grandparents, for example?


Konkel

Yes, I remember all of my grandparents. Of course, they're all passed away now. My maternal grandfather was a house builder out in Minnesota. My paternal grandfather, I remember him clearly, but I can't remember what he did for a living. The only interesting thing I can think of is my father was quite a good chess player. My mother's still alive; she said that my father was fifth-ranked in the world when he was a chess player. Actually, I remember with a little bit of irony, he used to play twenty-five people at once and he played blindfolded. He said the blindfold was irrelevant because matches fall into simple patterns. He said what he'd do is very quickly get rid of maybe twenty-three of the people and then he'd just take his blindfold off and play the real serious chess players and finish off the demonstration.



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Pelka

Do you have any particular memory or memories of childhood that stand out in your mind? Something that might be typical of something, or--.


Konkel

Oh, no. Not that I can think of right off-hand. I played a lot of basketball, just typical kid, I guess.


Pelka

And generally a happy childhood?


Konkel

Yes, I think very much so. You know, nice home, very loving parents.


Pelka

Outside of yourself, and we'll get into this in a little bit, were there any people with disabilities in your family or people who were close to you as a small child with disabilities?


Konkel

No, and I guess I should say right off-hand, I wasn't born blind. Obviously, if I was playing basketball, but--. Although I do shoot baskets every now and then. But, no, I can't think of anyone in the family who was disabled.


Pelka

Anyone in school, do you remember?


Konkel

I remember a girl who had a leg brace, a metal leg brace. I don't know if she had had polio or something like that. She was probably, might have been, you know, sort of late grammar school. I can't remember her name, and that's about all I can remember in terms of classmates.


Pelka

Do you remember any thoughts about disability, or any discussion of disability?


Konkel

I suppose I felt a little bit sorry for her. I mean, I think that would be natural. I don't remember ever discussing disability. No, I don't think it ever came up until I became disabled. It was just, sort of, not a subject I connected with or overlapped with.


Pelka

Did people in your family talk about politics at all?


Konkel

Yes, my mother is very much a--still is, a Democrat. Very much a dyed-in-the-wool Democrat, I guess I would say.


Pelka

So did you talk about presidential politics or--?


Konkel

I was very--. I still am very interested in politics. I remember when I was twelve, I think it was, or maybe eleven, getting very interested in the Kennedy-Nixon campaign and the debates, I watched the debates. I remember talking to my buddies out on the street about it. Actually, I remember in 1956 my father was really big on--he was a big Adlai Stevenson fan. I remember watching the convention on television. I was seven years old, I guess, at the time.


Pelka

Did your parents do political--. Did they volunteer? Or--.


Konkel

No, no.


Pelka

As a teenager or young kid, did you do any political activism?



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Konkel

Not that I can think of.


Pelka

Student council stuff or anything like that?


Konkel

I think I ran for boy's vice-president maybe in tenth grade, but it wasn't, it wasn't a big deal. Actually I remember being an advisor to a guy running for student body president when I was a senior in high school. That was a lot of fun. So, as I said, I'm still interested in politics but not a real politician type myself.


Pelka

How do you mean an advisor? He was running and you gave him tips on how to get votes or something?


Konkel

Yes, well, it sounds kind of strange. I wasn't his campaign manager, but I ended up almost being his campaign manager. In fact, I remember when he was elected. This was one of my proud moments. I remember that he gave a talk to the high school student body, and he said something like, "I want to thank someone in the audience who is most responsible for me winning this" or something like that. I thought he was going to say the campaign manager, but he ended up giving my name and everybody turned and applauded and it made me feel good. Actually, he's mayor of Santa Cruz, California right now. He's a neat guy.


Pelka

Did you go to public school?


Konkel

Yes.


Pelka

Let's see, growing up in the fifties and early sixties or in the fifties at any rate, were you aware at all of the civil rights movement? The African American civil rights movement and what was going on there?


Konkel

I don't think I became aware of that, maybe until college. Well, certainly I was aware there was one. It must have been in high school, sure. High school was like '63, yes '63 to '67. So, yes, that's right. Certainly college I remember, but we must have been aware of that in high school, yes.


Pelka

Do you remember talking about it at all? Or having discussions at home about it, or--?


Konkel

Not that I can think of. That's going back a long time. It's just I can't remember very clearly. [laughs]


Pelka

Yes, yes.


Konkel

I'm sure my family wasn't racist at all. I mean, my mother's very--you know very--sort of a welcoming person, so I'm sure there wasn't any sort of using the "N" word or anything like that in the household. But I don't remember specifically talking or any particular conversations on the subject.


Pelka

So, certainly, no one you knew was involved in any of the demonstrations or anything like that? Any of the sit-ins or the--


Konkel

Well, at Berkeley, I mean, I started at Berkeley in '68. And of course there were--



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Pelka

But I mean, before going to college?


Konkel

Before college, no.


Training at the Orientation Center for the Blind, 1968

Pelka

When did you become disabled?


Konkel

The summer after high school. I was racing my sports car and I crashed it. It rolled twice in the air and then landed on its four wheels, and I slammed my jaw down on the steering wheel. I was wearing my seat belt. People didn't have shoulder harnesses at the time, so I slammed my jaw down on the steering wheel and it shattered my--basically my jaw--and compressed my optic nerves.


Pelka

Which means you were totally blind?


Konkel

Yes.


Pelka

This was pretty immediate.


Konkel

[laughs] It was pretty immediate. Also, I was badly injured. I was in the hospital for two months. In fact I was in a coma for a week.


Pelka

This would have been the summer of 1967?


Konkel

'67, exactly.


Pelka

Your "summer of love" experience.


Konkel

[laughs] Yes, it kind of came to a sharp end.


Pelka

How long were you in the hospital?


Konkel

It was two months.


Pelka

Then was there any kind of rehab? Or did you go right out of the hospital to home?


Konkel

Let's see, it was early August when I had my accident and after the two months I went home. We lived in San Jose at the time. I was brought up in San Francisco, and my mother remarried and after sixth grade--. I went to Catholic school up through sixth grade and then public school. Anyway, I was living in San Jose at the time so I went back to my mother's home and basically just recuperated, tried to put weight back on. I got down to 119 which for me is really emaciated. So I put weight back on and tried to get my strength back. Then at the beginning of the year, so January '68, I went to the Orientation Center for the Blind in Albany, California. I stayed there five months and then I started Berkeley in summer school, June '68.



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Pelka

Okay, now, did you find out or seek out the Orientation Center? Or did somebody from the center contact you? Or, how was that arranged?


Konkel

I was at Stanford Hospital those two months. I remember there was a blind guy that I talked to like once a week. He's like some sort of counselor or something like that. I think through him or through the staff there, I ended up being put in touch with the rehabilitation--California State Rehab [California Department of Rehabilitation]. I'm sure it was the idea of my rehab counselor or somebody like that to go to the Orientation Center.


Pelka

Had there been any kind of rehab between the time you got out of the hospital and the time you went to the Orientation Center? Any contact, or--you were in the hospital for two months and then you went home for a while and then, how--?


Konkel

There must have been something. I don't recall it. I just sort of think back and remember being in my mom's house. What did I do? I remember I started taking a college class just on a sit-in, what do you call it?


Pelka

Audit.


Konkel

Yes, audit, that's the word, auditing. I remember knowing that I was going to the Orientation Center, so I must have had regular contact. I don't remember. I remember my rehab counselor, it must have been Joan Easterbrook. She must have been my rehab counselor right away.


Pelka

Do you know how to spell the last name?


Konkel

Yes, I think it's spelled the way it sounds. Easter like Christmas, Easterbrook. Or was she, maybe she was up in Berkeley. It's so far back I don't remember. But I don't remember feeling sort of bewildered or wondering what I was going to do. I remember knowing, "Okay, I'm just getting my health back together so I can go to the Orientation Center." So, it must have been all squared away pretty quickly when I was in the hospital.


Pelka

Okay, what was the impact of your--first, your injury and then your disability on your family? Do you recall?


Konkel

I think they were very good about not displaying a negative reaction. They were very encouraging. It must have been upsetting, I would assume. Not just my disability, but my health situation. They were very worried. I lost a bunch of blood at the accident, like sixteen pints of blood, like I said I went into a coma. I think I had fifty-seven fractures in my jaw. So they had to, they had to take a photograph of me to try to--. I mean, my mother produced a photograph of me so that they could try to reconstruct me so I look vaguely like I did. I don't think I have any particular signs of it now, but--. But the impact on family, nothing really comes to mind except my mother. I don't remember her once being, you know, sort of horrified or upset. I think she was very good at, you know, sort of shielding me.


Pelka

Do you remember having specific discussions about what impact this was going to have, about what your future would be?



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Konkel

I think, yes. I'd planned to go to Berkeley, so the only discussions that come to mind are about my career and I remember thinking I would continue on the same path that I had tentatively chosen. Which was to get interested in, I mean study politics, maybe political science, and maybe be a professor or something like that. I think I remember talking with my mom and basically deciding, yes, I could just go ahead and pursue that same goal. I ended up changing my mind once I studied political science, I started to think maybe this isn't so interesting.


Pelka

At Berkeley, going to Berkeley. you mean UC Berkeley?


Konkel

Yes.


Pelka

University of California at Berkeley. So you went into the Orientation--it's Orientation Center for the Blind?


Konkel

Yes.


Pelka

Okay. In Albany, California, is that right?


Konkel

Right.


Pelka

What was that like?


Konkel

It was fun. Yes, the staff was very competent, it was very practical. It had mobility instruction and, you know, the guys would teach me these lessons like always sweep the--you know, clear the step before you step onto the curb and they sort of drummed in these lessons. It was a very practical period of time.


Pelka

This is a residential center, you went to live there for a while?


Konkel

Yes, yes. It was a campus just north of Berkeley.


Pelka

How many other people were there at the time?


Konkel

It must have been twenty-five or so blind people, twenty-five or thirty.


Pelka

How many staff, do you recall?


Konkel

Maybe a dozen, just taking a guess.


Pelka

Okay, and were most or all of the staff blind themselves?


Konkel

No, I think some were. It was probably half and half, I would think.


Pelka

Do you remember was this a state-run agency or was it a private nonprofit?


Konkel

It was state, state-run.


Pelka

So, they didn't charge tuition or anything like that?



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Konkel

No.


Pelka

What were the other, what were the other students like?


Konkel

It was a mixture. I remember one guy, Dave Wettle, I think his name was, who lost his sight the way I did. Most of the people had been born blind. You know, some older people--. I remember a guy who was an architect. I remember thinking, "Gee, that would be a rough situation." He was like, maybe in his mid to late forties, but--.


Pelka

Were most of these young people, though?


Konkel

I would say two-thirds young, if I remember correctly.


Pelka

Young being teenagers?


Konkel

Yes, nobody under maybe eighteen. But eighteen, twenty, that sort of thing.


Pelka

Pretty even mix of men and women?


Konkel

Yes.


Pelka

Was it like a dormitory type situation? Did you have roommates?


Konkel

Yes, we had roommates in a dorm.


Pelka

Okay, so it was like two people in each room--


Konkel

Yes.


Pelka

--as opposed to, I don't know, ten people in the room or something.


Konkel

Right, it was two per room. It was a nice facility, the rooms were big and everything was very nice.


Pelka

Something like a cafeteria to eat, and stuff like that?


Konkel

Yes.


Pelka

Okay. Were there any--I'm not quite sure how to phrase this, but was there any political discussion at that point? Let me put it this way, did anyone talk about any sort of change of status because you were blind now? I mean, did people talk about interactions with sighted people, any kinds of changes that they'd experienced in people's attitudes? Kind of a vague question.


Konkel

Oh, I have two answers. One is the head of the facility, his name is Mr. Jenkins, was, I think, an activist, you might say, in the National Federation of the Blind [NFB]. And he'd have a--maybe it was a weekly class and kind of instilled a, I don't want to say militance, but sort of a sense that we had rights and we were just like everybody else. He was a very, very bright guy. So he gave us all a certain feeling of, or tried to instill in us a confidence and a feeling of equality. In fact, I remember we learned to walk with white canes rather


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than guide dogs. He explained that that way you're totally independent and you're not, sort of, taking the easy way out. You're your own person.

Yes, the other answer is once I got to Berkeley I started to realize how differently I was treated. At the Orientation Center, my disability was very much physical, I mean I really didn't feel sort of an emotional reaction. It was a physical challenge. Then once I got to Berkeley I started feeling, sort of, the social aspects of it.


Pelka

I want to get back to that, but I want to just stay with these weekly sessions for a bit. This was then pretty much overtly political in the sense that you talked about rights and equality.


Konkel

You know, it might even have been blind law or it might have had the word "law" in it. So it was very much--very explicitly--. I mean, he wasn't pushing the NFB over the other. There was another one, American Council of the Blind [ACB]. He wasn't, you know, sort of recruiting for the NFB. I don't think he ever would have crossed the line. But it was very, very clearly structured as--these are our rights, and he'd go into different aspects of it. I remember the tone; I don't remember the content a lot. But I remember he had this watch that would chime. It was a kind of a cool, like a pocket watch, and in the middle of the class it had this nifty little chime. But he would, yes, he'd have us in the room, and he'd be--. I suppose he was reading Braille. He'd read different passages, maybe he was even reading the law. I'm not sure, but it was all about, sort of, different aspects of rights. I suppose in employment and that sort of the thing. Maybe dealing with the welfare system.


Pelka

Did he use the phrase "civil rights?" Do you recall whether that particular phrase came up?


Konkel

It must have, because of the time. That was '68, so he must have used that phrase. I don't remember particularly having him tie it to, for instance, black people and their rights or women. But, certainly that was the tenor of it.


Pelka

Did he mention the name Jacobus ten Broek at all?


Konkel

Oh, yes.


Pelka

Okay, and how so?


Konkel

I believe he had died very recently. But he apparently was a really powerful head of the NFB. Yes, he definitely had died at the time, by then. I remember a wonderful speech by him that I listened to on tape. Have you ever heard of the "Within the grace of God" speech?


Pelka

I don't think so.


Konkel

Yes, it was sort of his "I have a dream" kind of a thing, where it was apparently the classic speech, at least from back then. It must have been a speech to the Convention of the National Federation of the Blind. He had this wonderful speaking voice. He taught speech. If you thought of his name, you must know he was a speech professor at Berkeley and in the Free Speech Movement which I missed. I'm happy to say I'm too young for that. But he gave a famous speech where a student, I guess, sort of leaned over on his knees and ten Broek read Braille on the guy's back, giving a speech at Sproul Hall. But,


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anyway, in this "Within the Grace of God" speech the basic concept was you see a blind person, maybe he's a beggar or something, and you see him sort of going along next to the wall, or--. He sort of painted this kind of pitiful scene. He said, "You think, there but for the grace of God go I." He was saying that your idea instead should be "Within the grace of God, there go I." The idea being that we're all cut out of the same cloth. You shouldn't define people by a disability. So you're a disabled person rather than a--. I mean, I'm a blind person rather than "the blind," I guess would be the way he put it.


Pelka

Do you recall at that point having thoughts about advocacy or becoming an advocate on behalf of blind people or disabled people?


Konkel

Yes, I pretty quickly--and maybe at the Orientation Center, probably even before that--I'm trying to think of how to phrase this without sounding arrogant even though I probably am arrogant. I decided that I wanted to help blind people. At the time I don't think I was thinking of other disabilities although I certainly knew that they were sort of lumped together in a certain sense. I basically had done well in school and expected to do well in college. I just thought I've got enough going for me so that the best thing I can do for blind people is to proceed without--not sort of become a professional blind person, but live a life where my blindness is just an aspect of my life rather than having it define my career and that sort of thing.

That said, I didn't think it would be emotionally healthy to sort of pretend I wasn't blind and never associate with blind people or anything like that, so I decided instead that I would work directly with blind people in college, then just sort of cut it off, and as an adult, live totally independently from blind people. Not that I wouldn't associate with them, but just--. You know, for instance, this is something that was pretty common. Certain blind people decided that they wouldn't marry a blind person, and I was certainly in that category, even though it would've been easy to. I mean, there were some really nice gals that I met.


Pelka

Were other disabilities ever discussed in these weekly meetings or in any of the discussions that you had at the orientation center?


Konkel

I don't recall specifically and I tend to doubt it. Because he was very much focused on blind people.


Pelka

So then you left the Orientation center, was there a kind of graduation or--? Was it a set period of time? Or did you have to pass a test? How was that brought to closure?


Konkel

First of all, there was no specific graduation because we didn't all come in at the same time and leave at the same time. People sort of came in and left according to their own personal development. I think when I started they roughly thought that I would be there five months. I was hoping to go to Berkeley for the beginning of the summer semester since I'd put off Berkeley for basically an academic year. I think they intended to keep me that whole time. It was a relatively short period. I was considered a relatively quick learner, I suppose. My mobility, I think, was considered good. I guess because I'd been walking as a sighted person, which seemed to me pretty easy to do. But, my Braille is still slow. I use it every day all day long, but I don't read much and it's just like little tiny notes and things. I couldn't make a living if I had to do it reading Braille. I read by computer.



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Pelka

Okay, when did you leave the center?


Konkel

I think it was Memorial Day weekend, '68.


Psychologically difficult transition to University of California, Berkeley

Pelka

Okay, and then did you go right to Berkeley, then? That was the fall semester?


Konkel

It was the summer semester; I mean a summer session.


Pelka

Oh, yes, Memorial Day, right. A summer session, okay. Now earlier you said that when you got to Berkeley you noticed a difference in attitude that people had towards you. How did you mean that?


Konkel

Well, frankly it was psychologically difficult, that first year. I think it took me about a year to really, sort of, get my head together about it. But people, well-meaning people--everybody was well-meaning, really, but they would offer me assistance that I didn't ask for, didn't need, didn't want. Like, I'd be crossing the street and somebody would grab, you know, just take my arm without saying anything. I'm in my own world and all of a sudden somebody's got hold of my arm and I kind of--what do I do? I had difficulty deciding, do I thank them for this help? Sometimes I need help. There have been, you know, some situations where my safety has been at stake and somebody helps me and I'm grateful, obviously.

In fact, I went to a psychologist a couple of times to talk to her about it, and I said basically, I feel like I'm supposed to thank this person for sort of intruding on my personal space when I didn't ask for it. It was a dilemma, I guess. I think she said, "Well, it's normal to feel resentment over something like that. No, you don't have to thank them." But she said, "On the other hand, you don't want to go through life sort of snarling at people, so you have to find a balance." So the balance I came up with was just, if somebody comes up to me and sort of does something unsolicited that I don't need, like I was describing about taking my arm, I don't thank them. I'm just kind of silent. So maybe they think I'm deaf as well as blind, so I don't know quite what goes through their mind, rather than falsely thanking them. So that's the one sort of--once I straightened that out, that made me feel a lot better, then I think I started to become adjusted to my different place in society, if you will.


Pelka

You went to a psychologist while you were at Berkeley?


Konkel

Yes, at Berkeley, maybe five times or something like that. She was up there at the medical--Cowell hospital. Her name was Mrs. Loren, I think, like Sophia Loren. Really, really great lady.


Pelka

What other kinds of things do you remember in terms of people's attitudes? Did anyone say anything to you that you recall?



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Konkel

Well, I remember right after I moved to Berkeley, crossing the street and some guy, an older guy--it's like he had his head out the window or something--and he was saying, "Go to the left, go to the left." I guess he thought I was veering off or something like that. I don't know that I was. It wasn't like a busy street or anything like that. I certainly would have found the other curb. Sometimes I screw things up, but I remember thinking, "Geez, I guess I'm sort of a spectacle now" if somebody's in the middle of their day and they take the trouble to watch me crossing the street. It was something that didn't hit me at the Orientation Center. It wasn't until I got to Berkeley that I really started to get that. I guess at the Orientation Center, when I'd walk around, I'd have a mobility instructor watching me. Maybe the people on the street knew that and kept their distance. So I didn't have that kind of encounter with people until I was truly on my own at Berkeley.


Pelka

Okay, I'm going to pause this for just a moment here.



[Tape 1, Side B]
Pelka

Okay, you were talking about being on campus at Berkeley and the kinds of changes that you've noticed in the attitudes of people. Anything else you want to say about that?


Konkel

It was particularly stark for me because I'd been sighted for eighteen years and then I had this kind of nine month hiatus. I wasn't in the real world, if you will. Then I'm suddenly plunked back into the real world. It was just a very, very stark transition for me.


Founding student chapter of National Federation of the Blind

Pelka

Now, at this time, did you become involved or were you involved in any advocacy groups, for instance, the NFB? Did you go to any meetings once you got out of the orientation center?


Konkel

The short answer is, yes. I'm trying to remember. It was definitely my freshman year, I must have gotten--. It must have been through Jenkins that I became involved in the NFB. Jenkins being the head of the Orientation Center. In fact, I became very close friends with Hazel ten Broek, the widow of Jacobus ten Broek. I remember she had--what was it?--a Firebird. I remember riding around in her Firebird a lot. She had this big house, this house that was an old converted stone quarry up in the Berkeley hills. And she talked about how she'd sometimes find one of his canes leaning against a--you know, leaning in a corner. We're always misplacing our canes, and she talked about how that would bring back thoughts of him and so forth. So, I must have been--. I must have gotten involved already at the Orientation Center because once I got to Berkeley, through the NFB I became close friends with a blind student, Jerry Neufeld, who is a really, really, nifty guy. The reason I know it was my freshman year, because I remember it was my first year in college and it was his last year. He, in fact, was getting his third Ph.D. if you can imagine that! [laughs] I gave him a hard time about that. He said, well, it's very useful in the academic world. But he was a really good, fun-loving guy.


Pelka

Was there a campus chapter, is that how it was organized, or a regional chapter? Do you recall?



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Konkel

You know, I think--I think maybe I founded a student--. Yes, the Northern California--. I think it had two more initials, Student's Division, NCSD, of the California--. Well, the NFB had a California chapter that was a very big part of the NFB. In fact, Chick ten Broek, I guess he was called, had been president of the NFB for years and years. By the time I got involved, Russ Kletzing, a Sacramento attorney had become president of the NFB, but the California chapter was the California Federation of the Blind? I forget. I started a Northern California students' chapter of it.


Pelka

Do you recall, are we talking about weekly meetings, biweekly meetings?


Konkel

Hmm, I don't think it would have been weekly. They were regular meetings, it could conceivably have been weekly, but I tend to doubt it.


Pelka

How many people would show up at a meeting?


Konkel

Gosh, was it twenty? I'm a little vague about it because maybe the meetings were somehow tied in with the statewide organization meetings. I'm trying to think. Yes, I wish I remembered more clearly; it was just a long time ago. [laughs]


Pelka

Do you recall, were the meetings on campus or off campus?


Konkel

I think they were on the Berkeley campus, and I think I was president of this chapter.


Pelka

Besides having meetings, were there actions that you took? Or activities or discussions? What would--let's say in the first year or so, what did the group do?


Konkel

I think the work was in conjunction with the NFB, so it was basically supporting whatever the NFB was interested in. They would focus on different issues related to employment, and access. Access was a big word. Sometimes the issues seemed pretty ridiculous to me. Like, they didn't want--. This might be a more recent issue, but some big deal about whether on an airplane your cane is taken away from you. I just thought, I mean--. First of all, get a folding cane and you don't have to worry about it. But I remember sometimes the NFB seemed a little petty to me, but I was supportive of it. This chapter was clearly in support of the NFB. In fact, they paid me. I remember going to San Diego once, they paid me to go around and give talks trying to generate interest among students in the NFB.


Pelka

They paid you to go to different campuses?


Konkel

Yes, and I think it happened more than once. The only one I remember specifically was San Diego, because I remember Don Galloway, meeting him. He was a black guy who was blind, a very compelling sort of a guy. He was considerably older than I was, but still a student at the time.


Pelka

What were your first impressions of the Berkeley campus? Had you been there before becoming a student?


Konkel

Yes, very much so.



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Pelka

Okay, so it wasn't like you were--. Some students, they go to school but they're also away from home for the first time, and it's the first time they've been in the city and all that. But you'd been living in the area pretty much all your life.


Konkel

Yes, so I had--. For instance, I had a good picture of what the campus looked like in a picturesque kind of sense. I mean, it had the tower and Sproul Plaza, so it was kind of fun to know what the place looked like, if you know what I mean.


Pelka

Were you living at home still? Were you on campus, or off campus?


Konkel

Well, on campus, I guess is the way you'd describe it. In a dormitory a couple blocks from the campus. Because my mother lived in San Jose.


Pelka

What were you taking those first years?


Konkel

The first quarter, that summer session, I took Speech, Speech 1A, which is an alternative to English. What was it? Like cultural anthropology, I'm not sure. But in general, I was a political science major.


Influences of political climate at Berkeley, 1968-73

Pelka

So you must have been very aware of everything that was--of the political climate at Berkeley at the time. We're talking around 1968.


Konkel

Right, oh yes.


Pelka

Talk a little bit about that. Were you involved at all? Or sympathetic with, for instance, the antiwar activism that was going on on campus?


Konkel

Yes, would be a direct way to put it. It permeated everything, it was an absolutely enthralling time intellectually. Berkeley saw itself as really the leader, the epicenter in the world, really of that generation's rethinking of society. They taught you that at Berkeley, just intellectually to challenge everything. Not be negative and sort of attack everything, but to sort of start with a clean slate on every subject and rethink it. Institutions, relationships among classes, among people. I mean, you just breathed it; it was on the campus and in daily life and just was everywhere. Meanwhile, you had over in San Francisco, you had the sort of cultural center of the revolution. Of course, you had the British invasion in terms of rock music, but later on that decade--. That was kind of early and continued--but then sort of mid to late sixties you had Janis Joplin and the Grateful Dead and all this stuff going on across the bay, which was also a lot of fun. We'd go over to Golden Gate Park and Janis Joplin would give a free concert, and really, it's an exciting time.


Pelka

Wow. Were you involved in specific antiwar organizations or activism? Did you participate in demonstrations?



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Konkel

I participated in demonstrations but really--. There were these mass demonstrations where you--. I mean, I wasn't a leader in civil rights or the antiwar movement. Like, I don't remember ever going to a meeting about it or anything like that. But I was sympathetic with it, and I'd be a body out on the street when there was a demonstration. But everybody was, it wasn't like I was different than anybody. There'd just be these huge demonstrations.


Pelka

What about women's politics and the women's movement, what was your awareness at that time of what was happening with feminism?


Konkel

I became aware of it, I probably--. In fact, I remember back when I was sighted and I had a girlfriend and I'd make comments about other girls. I remember, I was probably a senior in high school. My girlfriend ended up having a little talk with me once about how it made her feel bad. I remember realizing that I was really sort of a Neanderthal on relations between the genders. I think that was the beginning of my awareness of the women's movement. It developed later than, say, the civil rights movement for black people or African-Americans, whatever. My guess would be maybe it was more in the early '70s that it really started to become strong with the National Organization for Women, of Women, whatever.


Pelka

You mentioned the Free Speech Movement a while back. You came onto campus sort of on the tail end or after the peak of that. Were there aftershocks, in a way, and did you come in contact with any of the after effects of that?


Konkel

It was over. I believe the Free Speech Movement was '63. As I said, I started on the campus in '68, but some of the people were still around. I think that Mario Savio became famous, or well-known regionally at least, in the Free Speech Movement. He was still very much active in the late '60s. But it was just a wonderful time to be a college student, wonderful place to be a college student. Living in the East, now, I wonder if we were too, sort of, full of ourselves. I suppose we were, I mean of course, pretty much everybody is at that age. But out here, I guess maybe Columbia would be the closest you could come to it. But it was just a really exciting time intellectually, to just feel free to consider everything and challenge everything.


Pelka

You were involved with organizing this NFB chapter on campus. So there were other blind students on campus, then.


Konkel

Yes.


Pelka

Okay, was it a fairly large community? How many? Do you have a sense as to how many?


Konkel

Yes, maybe two dozen.


Pelka

Was it a close-knit community?


Konkel

I wouldn't say so. Really, the only friend I remember is Jerry Neufeld at that time, the first year or two on the campus.



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Pelka

Okay. There were presumably services available for blind students on campus. I mean, when you became a student there, did anyone meet with you or did you seek out any kind of counselor or rehab person or anything like that?


Konkel

I think that it was not provided by the campus but by the state. This Joan Easterbrook was my rehab counselor. So she wouldn't have been on the campus, per se.


Pelka

And were there things like readers, or how--?


Konkel

The state paid for readers, so I had readers on campus. Now, as I mentioned, I read by computer. But at the time, it was all readers and tape recorders and that kind of thing. Also, borrowing the tapes, you probably heard about the Recording for the Blind and--.


Pelka

Yes. This is sort of a left-field question. I was just wondering, are you aware of a film called Rites of Passage? This is a film about blind students at the Berkeley campus in the early 1900s.


Konkel

Really?


Pelka

Yes. And apparently there's some kind of history that I'm trying to track down.


Konkel

It doesn't ring a bell. I would think I would have heard of it, but--. Could I take a time-out?


Pelka

Sure. [break]


Discovers the Physically Disabled Students' Program, 1970

Pelka

I think we were talking about the other blind students and whether or not it was a close-knit community, and you had just said that it really wasn't a very close-knit community on campus. When did you--this may be jumping ahead a little bit--but when did you first become aware of the Physically Disabled Students' Program? How did that happen?


Konkel

Let me tell--go about it indirectly. So, my first year at college, Jerry Neufeld and I were big buddies and were really into the NFB and so forth. I mean, we were basically into getting our degrees. He was married and had a couple kids. Like me, he was married to--. Like I ended up being, he was married to a sighted woman and went on to live a life, he was a professor. He's probably still up there in Canada. But he'd made that decision, like I had, of basically not to become a professional disabled person. But anyway, Jerry and I were big buddies and then in the summer of '69 we went to the--. Maybe Jerry and I together founded that northern California chapter. It's hard to picture me being superior to him in that movement, because he was such a sharp guy. But I think I ended up--. I was president of it. I don't quite remember how that worked, but--.

But in any case, Jerry and I went to the annual convention of the NFB in the summer of '69 in Columbia, South Carolina. Russ Kletzing, the president, who'd gone through a very serious personal situation was extremely vulnerable at that convention. There was another


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faction in the NFB, led by Ken Jernigan, that isolated Kletzing. For instance, he and his wife held a party. Because he'd married a reader, what was his wife's name? It started with "P." I think it was "Paula" or something. She was a neat lady. Anyway, they held a party, hosted a party. Here the guy's president of the organization and this other faction boycotted it. So there's almost nobody at this guy's party, and Jerry and I went to the party. We were so thoroughly disgusted by that behavior that he and I quit the NFB together we wrote a--I think it was a joint letter that just said, we're not interested, forget it.

So that was summer of '69. So then the next year I wasn't involved in anything and summer of 1970, no the fall of 1970, I'd moved into an apartment with a buddy, a guy I'd met in summer school, which is where I met my wife, by the way, too. In the same summer school. Anyway, he and I moved into an apartment building that was right next door to the Physically Disabled Students' Program, PDSP, as we called it. I don't know quite how I knew that they were there. They must have seen me and started talking to me. I ended up going over there and visiting the place and right away met John Hessler, who was head of it. I was really impressed with John, he was a very dynamic guy. I'm tempted to say virile, had this strong speaking style, and this strong intellect to go with it. He was just really an impressive guy. I met him, he was a quadriplegic. I remember being really impressed, just sort of clicking with him and in sort of a very personal sense.

I also remember Judy Taylor, who was a quadriplegic. She'd become a quadriplegic standing in the surf, was hit by a wave in a way that broke her neck, just as a teenage girl. Then Herb Willsmore was also a quadriplegic. He'd become a quad, he was diving into a swimming pool, and a buddy called his name and he turned to look at the buddy and hit the water with his head turned and broke his neck and became a quadriplegic. These three people just blew me away, they were so--.

By then, I felt comfortable with myself that this sort of transition I went through was really pretty much my freshman year. So, by then I was feeling very secure emotionally and psychologically and very solid. So it wasn't like these people were rescuing me from anything, but I just was absolutely blown away by them. I was so impressed by them. They were so, oh what's the word? Calm and serene, and really compelling. Just compelling individuals. Particularly John, but Judy and Herb as well.


Pelka

So prior to moving next door, you really hadn't heard of them or hadn't run into the organization or any of these folks on campus?


Konkel

No. In fact, maybe I'd never spoken to someone in a wheelchair in my life until I talked to John Hessler. That could be the case. I don't remember seeing anybody in a wheelchair when I was sighted, although certainly I've seen a bunch of them, they were just so common. But that might have been the first conversation I'd ever had with somebody that was in a wheelchair. But I got to know them, and John asked me to join the staff of the PDSP, so I got on their payroll part-time.


Pelka

When did that happen?


Konkel

That happened very quickly. So this was probably all September, 1970. So I became the--I was the first blind person that they'd hired.



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Pelka

Now why, maybe you could lay out a little bit of the context. Do you recall why he asked you to join the staff?


Konkel

Because they were the Physically Disabled Students' Program, so it was Berkeley students who were disabled. Blindness was a disability, so they just apparently intended to have--I think they'd intended all along to have, to integrate blind people. I don't think there were any deaf people on the staff, at least not when I was there. But they had a lot of quadriplegics, but they also had other disabilities. Another guy that was really impressive was Hale Zukas who had severe cerebral palsy. He could speak but I just couldn't understand it. I'd try hard. But he'd have this pointer thing on his head, it'd be like a headband with a pointer protruding forward from it, he'd point to a spell board to communicate with people. But he was quite impressive, too, because he was clearly very bright and like Hessler had a masculinity. I don't know what the right word is. It sounds sexist to put it that way, but a power behind him which was really impressive. There was a woman, an older woman, who could understand him. It might have been Zona Roberts, the mother of Ed Roberts, either that or it was Hale's own mother. I forget now. But, in any case, the PDSP was intended to have a variety of disabilities in it, so they sort of put me in charge of the blind wing, if you will.


Pelka

Did you know or were aware of, or become aware of the history of the project? Did people talk about where they'd come from and how they started?


Konkel

A little bit, I remember Ed Roberts was--right away, I learned that he was instrumental in getting the movement going. He wasn't around at the time. He lived, maybe down in Palo Alto or something. So I hadn't even met him. It was a long time before I even met Ed Roberts, so he wasn't physically a presence. But people sort of clearly thought of him as the initial guiding force. For me, it was John Hessler. He was the real, you know, what do they say? The rod that stirs the drink? Or whatever. He was really the intellectual leader of that whole group.


Pelka

You talked a little bit about your first impressions. Maybe you could expand on that some. What were your first days like there? Do you recall? I mean, is there any incident that stands out in your mind?


Konkel

I remember it clearly, it was at the back of the building. So there's like an alley between my apartment building and the entrance. You'd go to the back and there was a wooden ramp you'd go up for wheelchairs. I just, I remember the spirit of the place. It was a very lively place, a lot of humor, bright, bright people. As I said, Berkeley had this energy level that was intoxicating. We saw ourselves as part of that in this movement. It's sort of, we'll handle the disabled part of it, you guys over there, you people worry about black people. You've got women worrying about women, although I said maybe that wasn't quite as active at the time. But we saw ourselves as sort of the caretakers of the disabled part of what was going on in Berkeley. You'd feel that energy in the room. Not everybody there was disabled. There were a few able-bodied people that were part of the movement, but--.


Pelka

Besides being energized, how else would you describe the environment. I mean, was it kind of laid-back as opposed to being rigidly structured, if you're comparing it to your standard office, say?



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Konkel

Yes, very much laid-back in the sense that everybody was equal. You know, there's a term that bureaucrats out here use about round-tabling something, where it's sort of a formal way to have everybody equal to brainstorm something. Well, that was just part of daily life. Although you had the head of it, the director, John Hessler, there was in no sense a hierarchical stiffness or anything like that. It was just constant free-flowing thought and speech and just thinking through different issues and strategies and tactics and so forth. So, it was very much a freewheeling, I guess you'd say an intellectual atmosphere.


Pelka

Was it hectic, or hectic at times? Or always hectic?


Konkel

I think "hectic" might be--it doesn't quite fit because if you have people--. Basically, these people are all in electric wheelchairs and there are typically a few attendants kind of, you know, drifting around the perimeter, if you will. So I don't think you'd call it--. You know, "hectic," I sort of picture a lot of physical movement and I don't think it was really hectic.


Pelka

I mean, like the phone ringing all the time, a lot of crisis management, things like that.


Konkel

Yes, crisis management, that doesn't quite capture it. It was people talking, figuring out about this or that, dealing--. Of course, what we were trying to do was reach out to disabled students, and so I'm just thinking of myself. I would call, maybe call blind students about some issue or another. I mean, I didn't want to pester people or anything like that but you--. But yes, there was quite a bit of telephone work, I would say.


Pelka

Was there a typical day? I mean, what was your day like? When would you show up at the office and what would happen during the course of a day?


Konkel

Well, I was a full-time student and I think I was paid for maybe twenty hours a week, I guess. Was it that much? I was about to say twenty percent, but that wouldn't be enough time, it was probably more like twenty hours. So I don't think I would ever put in a full day, because I would have to fit my time in around the classes, so I would sort of drift in whenever I wanted, I think. I don't know that I ever told them. I don't think I kept a firm schedule. Yes, I would just go in and maybe there'd be some issue that had already arisen that day. Maybe I'd be called into it. There were a couple of rooms, but there was one room in particular where people tended to be a lot, so sometimes I'd come in the middle of a discussion about how to approach this, that, or the other thing. So I'd be in that, or maybe there'd be nothing much going on. So people would greet me, and I'd sit down and pick up where I left off on some sort of a project. I wish I had a clearer answer for you about a typical day, but it wasn't--.


Pelka

What, what sort of projects?


Konkel

The one that I remember most clearly--. I should say, I think in general blind people are more--I guess I'd say independent. I mean, we don't need attendants, for instance, the way a quadriplegic would. So blind people didn't have a lot of needs that I could fill. I sort of had to scratch my head a little bit to try to figure out what to do. Sort of two kinds of activities, one would be to be involved in sort of the politics of the disabled movement. That was part of what I did.


135

The other part was providing services, and like I said, there weren't that many services to provide but for one area. When a blind person walks around, it's a little hard to describe it, but you can hear, for instance, a building by the echo. Or the sound sort of bouncing off of it, just like radar. In fact, blind people call each other bats as just sort of a nickname because of that. You feel like a bat. In fact, I noticed it in my hospital room at Stanford hospital after I lost my sight. I remember standing there by myself, I guess I'd gone to the bathroom or something. I thought, "Gee, I bet that's the wall right there." Then I reached out, and maybe eight inches away was the wall. I reached out and touched it and sure enough, there it was. There wasn't any sound emanating from it, it was just the echo of it. So if I walk down the sidewalk, I can hear the building to the right. I'm sorry, I'm giving you a long-winded answer here.


Pelka

No, no.


Konkel

I can hear a building to my side, and it's a very useful mobility tool. You hear the building end and you know you're coming to the--typically you might be coming to a curb or a driveway or something like that. In fact, I was walking with my wife in my mother-in-law's neighborhood and I said to her, "I bet people don't realize how much I take in of the world around me. It's not like I'm walking around cut off from it." I said, "For instance, the street, the road we're on goes straight and then curves to the left up ahead. She said, "Yes, it does." I said, "It's tree-lined, and she said yes. I don't know if that was just from the sound of the birds, or something really not that impressive. But then I said, "And to the right, is a typical suburban house set back from the street." She said, "Yes, that's right." I could hear it, there was a lawn, I could hear a building there. And then I said, "Now suddenly, there's a much bigger building set well back from the street." She said, "Yes, it's a church with a parking lot in front of it." Well, but anyway, you've got this sound going on all the time. Well, the long-winded answer that I'm getting to is you get on the Berkeley campus and you lose all that. I mean, you can hear where the buildings are, but you don't have sidewalks with buildings next to them; you have this wide-open campus. Boy, I could really get lost on that campus. I mean, you've probably seen the campus. It's a big place. But the big challenge--. One thing that isn't big a challenge--


Pelka

Hold on one second. [tape interruption]



[Tape 2, Side A]
Pelka

You were talking about getting to the Berkeley campus and there not being the sound, the sound echoes that you could use to orient yourself in this open space and all.


Konkel

So you could get really lost on there. I sure as heck got fouled up plenty. What we ended up doing, and I honestly can't remember whose idea it was, I'd like to claim it was my idea, but I simply draw a blank. But, it ended up being quite a big project. We got a company called Architectural Models, Inc., to build a scale model of the Berkeley campus. There was a room in one of the libraries, or a suite, I guess you would say, that blind students used. There were maybe, I don't know, six or eight offices, individual offices, and you could go in there and use a desk or whatever. In kind of the main room, we ended up with this architectural model. Let's see, it was much bigger than a 4 X 8 [foot] piece of plywood. It was maybe 6 X 10 feet, and it was tilted against the wall. So, the bottom part was out a few feet and it had these plastic blocks, and it had all the contours of the hills.


136

The Berkeley campus is perched up in the Berkeley hills, and so you had--and Braille names for the different buildings, and you had pathways, and the whole bit. So, whenever I'd get new classes, I'd spend a lot of time with this scale model to try to figure out, okay, Dwinelle Hall is here, and so forth. Basically, it helped just immeasurably in terms of getting around on that campus.

I know what I was going to say. One big activity for a blind student is getting books recorded on tape. But that was easy to do. You had to do it. You had to contact your professors in advance, and they were very happy to give you a, sort of a notional list of reading, and then you'd hire readers, and have them do it. That was something that you needed to do, but was really pretty easy to do. But this mobility part was a real challenge, and this model helped very much. That's really the only specific thing I remember doing that benefited blind students on the campus.


Pelka

When you say, "we did it," you mean the Physically Disabled Students' Program did it.


Konkel

Yes, that was PDSP.


Pelka

Who else there was involved with that specifically, do you recall?


Konkel

I guess other blind students. I was the only one employed by PDSP so I think I sort of organized it. But certainly I would have wanted input. I wouldn't want to unveil this thing and have everybody hate it, you know. So I must have been consulting the other students about whether it was a good idea and sort of how to do it. Yes, that's all I remember.


Pelka

How, when a decision was made, did you do that? For example, if presumably you came up with this idea about, okay, here's a problem that blind students are having on campus, and here's a possible solution, you'd go to a staff meeting or send a memo? Or how would that get discussed?


Konkel

I'd talk to John Hessler.


Pelka

Okay. Would he talk to other people? Or he'd make the decision right then?


Konkel

Um, something as big as that, maybe he'd talk to other people as well. He had the power to do whatever he wanted, but it was such a wide-open free-flowing sort of atmosphere. He didn't have like a private office, and you'd go in and close the door. It was all this big open room in the very back of this first-story suite of offices. So there would be people there, and so I must have approached him. Maybe, it's starting to come to me, maybe he and I were talking about what we could do for blind students, because it was a challenge trying to think of something constructive to do for blind students, because the NFB had been around for probably decades. The blind were well-established as sort of a political force. Blind students had been going to that campus for a long time, so it was a bit of a challenge coming up with things. So maybe John asked me, you know, "What are your real problems on that campus?" Probably the first thing I would have said is mobility, getting around in the blasted place. Or finding a new class without getting totally lost or being dependent on other people to sort of, lead you around. So, if I had to say, I would say that was the genesis of that. Maybe Hessler and I brainstorming about what PDSP could do for blind students.



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Pelka

You said that you hired this company to construct this, so there would have been a budget to the project. How would you decide how much would be budgeted for this, who would write the check, and all of that? Do you recall?


Konkel

The physical writing of the check, I don't recall. But I remember discussing it with the company, maybe with John involved. The number five thousand dollars comes to mind, which back then would have seemed like quite a bit of money. But it was a big project. But I don't recall. Yes, I don't recall the specifics of administering it, although it must have been a year in the making, I would think.


Pelka

Was there competition among folks who had different projects? You were coming up with a project for blind students, and as you say, five thousand dollars was a lot of money. Presumably, there's a budget and a limited amount of money that you all have to work with. Were there ever instances where people would say, "Well, that's an awful lot of money to spend on this one project. We've got eight other projects that need to be funded." Do you recall any discussions like that?


Konkel

I don't specifically. I had the sense that we were well-funded. As I said, certainly coming up with projects for blind people, I wouldn't have entered into a discussion like that, because if anything, we were not coming up with much to do that was constructive vis-à-vis blind people. So I never had a sense of, gee, we're short of money and that's going to have to wait. I don't recall that sense regarding projects for other disabilities.


Pelka

How were problems resolved? I mean, presumably, there were problems that would come up from time to time. How would people go about managing that?


Konkel

Yes, I think I'm drawing a blank on that. As you've gathered, sort of all roads lead to John Hessler. He was handling problems, but I just, I don't recall interpersonal problems. There must have been some, but I just, I don't--. I'm afraid I can't think of anything of interest to say.


Pelka

Okay. I heard that group lunches were kind of a big institution there. I was wondering if you participated in those and if you had a memory of what those were like?


Konkel

I have a vague recollection, so I must have, to some degree--. I would appear there based on my class schedule and studying, and so probably some--a few times a week maybe I'd be there for lunch and it was just a time of, sort of, banter and various kinds of light-hearted feeling. But I don't remember any specific lunches.


Pelka

You were a student, full time student, working part-time at the center. Is that how most people were set up? Or were there full-time staff? People who were full-time staff and not students or was everyone pretty much oriented around campus?


Konkel

There were definitely full-time staff. I'm having trouble thinking of--. Okay, Bob Metts was a student and he had, I've forgotten the name of it now, but he could walk with sort of a leg brace type thing, and got around on a golf cart. In fact, I used to ride around on the campus. He was a friend, too. He was probably my closest--probably the only person that I socialized with who was disabled rather than a blind person. But we'd go around the campus on this golf cart. It was really fun, because you just whip around and--.



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Pelka

It's Metts?


Konkel

Yes, M-E-T-T-S, maybe--Bob Metts, or T-Z, I just draw a blank on that. But he was really a dynamic fellow. Great personality, very funny. So he was a student, and after that I don't recall. A couple of them must have been students, like Judy Taylor and Herb Willsmore. But I really don't--I don't remember discussing academics with them particularly.


Pelka

You don't recall specific problems or tensions coming up, interpersonal tensions on the staff? Was there discussion about or issues around, let's say, race in the office? We'll begin with that, was there ever discussion about issues of race?


Konkel

I don't remember any specifically. I think, as a matter of fact, that we were all white people.


Pelka

Did that ever come up, did anyone ever say, "Gee, maybe we ought to have some outreach to the African-American community?"


Konkel

I bet it would have, but I don't specifically recall. I may be wrong, there might have been somebody there, I don't remember, that was African American.


Pelka

How about gender, was there any discussion about--? Were any of the women on staff feminists who talked about feminism? Did that come up in any way that you can remember?


Konkel

I don't remember that particularly. A woman that I didn't overlap with, Judy Heumann, might have. She seemed to be somebody who was, who just struck me personality-wise as somebody who might have been in that sort of mold, but I don't recall specifically.


Pelka

You say you didn't overlap with her. You mean she came to the center after you were gone?


Konkel

After me, yes, right.


Pelka

What about class? I mean, you were, you were all on campus, you were all striving to be--[phone rings] Do you want to get that? [pause] Anyway, we were talking about interpersonal relationships in the office and discussion in the office and I asked about class. Can you remember anything that falls into that category. Were there people there who were obviously, kind of, blue-collar instead of white collar?


Konkel

I don't think so. I think it was probably sort of typical of a student population where we're all sort of in this temporary poverty, but nobody that was sort of from the downtrodden or anything like that. I just--I don't remember anybody. I suppose people could say it was elitist or something like that, I don't know, but it was just a bunch of young people, basically.


Pelka

Okay. Was there any tension that you recall or discussion about staff people with disabilities versus nondisabled staff? Was there any tension between the two groups or did they [inaudible]?



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Konkel

The organization was clearly run by the disabled. There were a couple of people in particular, nondisabled people who played a big role. But they were careful not to, not to play the leading role. Chuck Cole, with whom I'm still in contact, I was a very good friend of his. He was a little older than we were, and kind of, I guess you'd say, an intellectual gadfly, providing input and perspective in a lot of discussions, a very sharp guy. He clearly--he would never push a decision in a particular way. He would be careful to defer to disabled people, I guess is the way I would put it. Then Ruth Grimes was also a nondisabled person who was very active in the movement. She was a city planning student and that overlapped a lot, because a lot of the problems, of course, that somebody in a wheelchair would have, would have to do with getting around campus and getting around the city, and curb cuts and accessibility issues.


Pelka

What was Chuck Cole's role? What did he do there?


Konkel

That's a tough question. So much of what we did was intellectual, trying to figure out different ways to bring things about. So he provided a lot of intellectual input, participated in discussions. I realize it sounds pretty vague but it's just hard to describe what the role was because the atmosphere was very much of an intellectual atmosphere of attacking different problems, trying to come up with appropriate solutions in dealing with maybe the campus bureaucracy or the state rehab department. A lot of it, too, was, what would you say, administrative. For instance, Ruth Grimes and I--. You want to talk about the CIL [Center for Independent Living] later? And stay with PDSP?


Pelka

Yes.


Konkel

Okay, it would be things like working with the--maybe writing memos to the faculty, or to the campus administration about this or that. That sort of thing.


Pelka

Was Chuck Cole, was he staff there or a volunteer?


Konkel

I would guess he was a volunteer. He'd come to work in Washington under LBJ [President Lyndon Baines Johnson]. He was in what at the time was called HEW, Health, Education, and Welfare. Then he left the job and went out to Berkeley to get a Ph.D. in city planning. So he was a full-time grad student.


Pelka

Were there a lot of volunteers, I mean a lot of people who weren't staff but who came to the center to do odds and ends?


Konkel

I only think of a few. Ruth Grimes' husband Chuck Grimes, who also I think was an attendant for people like John Hessler--. So those are the three able-bodied people that I remember most clearly, Ruth and Chuck Grimes and Chuck Cole.


Pelka

Okay. Were there people who came to the center to basically hang out? Was it kind of a social center as well as a workplace?


Konkel

Oh, very much, yes. Very much so.


Pelka

They were people who weren't necessarily staff. Let's say, disabled students who just come by to get a cup of coffee, rap with folks?



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Konkel

Yes, I think that's fair to say. The blind person I remember is Dennis Fantin, very nice guy. He wasn't employed, he might have ended up working there later, I don't know. But he wasn't employed there, but he was a good friend of Bob Metts, and I was a friend of Bob Metts. Dennis and I were never, like, big buddies or anything. But I remember him as being a blind student who was involved. Also, Jan McEwen [Brown], a very bright gal.


Pelka

Can you spell that?


Konkel

I think it's M-c-E--w-e-n.


Pelka

Actually I have a list of names I wanted to run down and you could just sort of blurt out your impressions, memories, and anecdotes, whatever comes up. You've already mentioned John Hessler, Herb Willsmore, and Judy Taylor. How about Larry Biscamp?


Konkel

Yes, he ended up becoming director after John Hessler. I think--maybe that was later, maybe it was CIL. Maybe he was--before I left he became director of CIL. He was a good, he was a sharp guy. But, how--. Off-tape, can I ask you something?


Pelka

Sure, okay. So, anyway we were talking about Larry Biscamp to begin with.


Konkel

Yes, he was, I think, head of CIL toward the end of the time I worked there. He wasn't as dynamic as Hessler. But, you know, he was a good enough fellow.


Pelka

Now, Hessler left because he got another job, right?


Konkel

I don't recall. I do remember when Ed Roberts became head of rehabilitation for the state of California under [Governor] Jerry Brown. But I don't recall what happened to Hessler. I think maybe Hessler stayed there but sort of stepped aside. I just don't recall.


Pelka

But you were gone by that time?


Konkel

That was towards the end of the time I worked there, but we've skipped ahead to CIL.


Pelka

How about Zona Roberts, what were your impression? When did you meet her and--?


Konkel

She was there from the outset. She was intellectually sharp and she didn't play a strong role intellectually. I think she hesitated. I thought of her as the older generation. She was Ed Roberts' mother, as you no doubt know. So I think she was there to be helpful, and even though she was very bright, I don't remember her being particularly active in discussions and so forth. I think she was sort of helping on the outskirts. I mean, you've got to realize that these people were seriously disabled and so there'd be a lot of needs physically to be met for them and that sort of thing. So I kind of picture her as being like, maybe Chuck Grimes, watching for places where she could be helpful while the rest of the work was going on. I don't know if I'm being fair to Chuck, but that was just the sense I had.


Pelka

Could you move a little closer?


Konkel

Oh, sorry.


Pelka

How about Mike Fuss?



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Konkel

The name rings a bell, but I draw a blank.


Pelka

Okay. Larry Langdon?


Konkel

Yes, I remember Larry. Very personable guy.


Pelka

Okay, what did he do there?


Konkel

He had the same role, really, I suppose, as I did. I think of him as--tie him in with Herb Willsmore and Judy Taylor, quadriplegic who is active from the outset. There a lot, participating intellectually.


Pelka

Do you remember meeting him? First impressions?


Konkel

Yes, obviously I, sort of, put a lot of, a lot of my reaction is to the person's voice, and he had a very nice, you know, sort of interesting voice. You know, kind of empathetic. Right, I don't just mean his voice, but his speaking style. You felt--you connected with him very quickly. So I remember that feeling.


Pelka

Don Lorence?


Konkel

Yes, I remember him. He was a fun guy. I remember him as being kind of little. I don't know why I thought--. Maybe he had kind of a small voice, but sort of a wry kind of a guy, had a fun sense of humor.


Pelka

And what did he do there?


Konkel

You know, the roles, they all kind of run together in my mind. But he was one of the sort of inner core of people who was intellectually involved. He maybe wasn't a driving force, but in terms of who was running things it was sort of Hessler and then another few people. He was maybe the next level down in terms of contribution.


Pelka

Tina Tonic?


Konkel

Yes, I sort of remember a Tina, but not well. Maybe I don't remember her at all.


Pelka

You mentioned Phil Draper, maybe you can talk a little more about Phil.


Konkel

Yes, he wasn't a particularly sort of dynamic, active participant. But he was a nice enough fellow.


Pelka

Did you have the sense that people were there for a long time? Like a core, a solid core of people who were there for a long, long time?


Konkel

You mean in terms of each day?


Pelka

Well, in terms of long-term commitment, months, years, as opposed to lots of turnover with new faces all the time. Or was there a mix, or how would you describe that?



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Konkel

It was very much in the first category; the, sort of, core people were there and people would be added, but the core were there for the long haul, I guess you'd say.


Pelka

Were there, were there camps or cliques or anything like that. Or even just circles? "Cliques" is kind of a negative, "camps" has a negative connotation, but I mean, you know, so-and-so hung out with so-and-so, and they were good friends even apart from the center, and these trio of people were friends and roommates and lived together apart from the center. Or was everybody kind of, was it all more or less a mix?


Konkel

There were groupings, I guess would be the way to put it. For me it was, as I guess I mentioned, it was Bob Metts--Bob Metts and Chuck Cole--I was very close to socially as well as in terms of the center itself. Then Dennis Fantin, more through Metts than anything. Although actually he ended up dating my sister for a while, Dennis did. He was very strong. He was a weight-lifter and everything, along with being a bright guy he was a real, sort of, macho guy. So, for me, it was that group. Then, of the people in wheelchairs, Hessler was certainly the one I connected with the most. Now, were they socializing? Yes, to some extent their socializing was at that center. In terms of cliques, I would say the inner circle was really John and Herb Willsmore, and Judy Taylor, and maybe Chuck and I, Bob Metts, Chuck Cole. I think that was the real inner core, if I can put it that way.


PDSP's basic role

Pelka

Okay. Now, just staying with the disabled students program a little bit. To begin with, just give me a sense as to what the basic work of the center was. I mean, when you're there at the office you're doing stuff, people are calling. What are they asking for and what are you doing?


Konkel

I'm trying to think. A lot of accessibility problems for the people in wheelchairs. You've got to realize this campus was a very old campus. Gosh, what, a hundred and fifty years old at the time. So there'd be all these buildings and so forth that had not been constructed with people in wheelchairs in mind. Bathrooms that are too small and so on and so forth. So, a great deal of it was just physically getting around. They'd have a class in a building and didn't have sufficient access to it or something. So, a lot of problem-solving in terms of mobility or accessibility.


Pelka

When you say problem solving, how would they go about doing that? Let's say I call, and I say I've got this math class and the building is completely inaccessible, what would happen?


Konkel

Yes, my involvement would have been only indirect here. Our center would have worked with the campus. I mean, the administration of the campus was obstructionist on some issues because--. We would end up having demonstrations against the administration, but on this disability issue I don't have the sense that there was any resistance. I mean, that's a no-brainer, as they say. How are you going to resist some guy wanting to get into his math class? But, I think that the PDSP would work with the campus to solve these problems as they arose. Again, I apologize for having such vague recollections, but a lot's happened since 1968 and '70. I guess this is '70.



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Pelka

You talked a little bit about this, but maybe you could just flesh it out a bit. About the range of disabilities that you saw there. I mean, you were talking about a lot of people, a lot of people who were using wheelchairs. Quads [quadriplegic], paras [paraplegics], post-polio, maybe, folks with CP [cerebral palsy]. What about other disabilities? Did you have an awareness that there were other types of disabilities represented?


Konkel

Those are the only ones that I remember specifically, although Bob Metts was--. He was the one, sort of, walking disabled person besides me, but with a mobility impairment, I guess you would say. So you had primarily quads, Larry Biscamp was a para, if I remember correctly. Hale Zukas, I mentioned, and then I was the one blind person on the staff. It was representative, like I said, with the exception of deaf people. I just--I don't remember a single deaf person being involved and I wonder if we talked about that. I vaguely remember joking with John Hessler about it, about how that'd be my real worst-case scenario in terms of communicating. You know, how do I communicate with a deaf person? But otherwise, I think it was quite representative.


Pelka

How about people with psychiatric disabilities?


Konkel

Oh, I got very quickly, in my dealings with PDSP, I had that first "P" sort of hammered home. These were physical disabilities, and so it was people with purely physical disabilities and absolutely no interest in involving themselves with people with emotional or mentally retarded people. In fact, it was very much the opposite. I think they were trying to make it clear that being disabled, physically disabled, in no sense implied anything about a person's mental acuity. So I think that's why they were so clear about not overlapping with mental disabilities.


Pelka

So there was no, there was no outreach to a group like, for example, Madness Network News or Mental Patients Liberation Front or something like that.


Konkel

No, absolutely none. It was very strict, like I said, to the point that it surprised me because it almost seemed excessive. But I realized that part of the message that they were giving was that "Even though my legs and to a large degree my arms don't work, my brain's just fine" is kind of part of the message.


Pelka

Do you recall any group like that attempting to do outreach to the students' program?


Konkel

No.


Pelka

Let me pause right here because we're getting to the end of the tape.



[Tape 2, Side B]
Pelka

We were talking about this distinction that was made between physically disabled and people with mental or psychiatric disabilities or whatever. You were saying that there really was no--there was a conscious effort on the part of the Physically Disabled Students' Program to not be associated with folks who might have other than physical disabilities. Anything else you want to say about that?


Konkel

No.



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Pelka

Okay.


Konkel

Except just maybe to add that the decision had been made long before I became involved and it was just clearly the direction they'd chosen.


Pelka

You'd said that the administration was by and large open to problem solving around some of the issues that disabled students would have. What about individual professors? What was the attitude like, if you can recall? Do you recall any particular instances that were problems or that stand out in your mind?


Konkel

[laughs] Well, the one I recall most clearly was taking calculus, and we had a Chinese professor, of Chinese extraction. His English was horrible. I don't know why they thought he could speak English, but he'd be up there at the blackboard talking, and it was kind of like his jaw was sort of flapping. He had this kind of strange version of English that was totally indecipherable. So for me, it was just a bust, but it ended up being a problem for the whole class. So we basically went to the math department and said this guy's got to go. So they got us a different professor. He might have been a teaching assistant, but he was the day-to-day teacher in the class. But that was, again, a problem for the whole class. I found the professors to be very cooperative, because, as I said, I would contact them in advance of the class and they all--they were concerned. They didn't want to be pinned down prematurely to a particular reading list. I think there's a term, I forget now. Curriculum, or--.


Pelka

Syllabus?


Konkel

Syllabus, maybe that was it. So they would often be reluctant at first because they hadn't decided on it. I would say, "Look, do whatever you want after you give me this list. I just need it so I can get a head start getting things on tape. If something ends up--if I have something on tape that I don't need because you've dropped it, so what? I'm not paying for it." So once we had that discussion, then they'd be perfectly cooperative.


Pelka

Do you recall any issues along these lines for other students? I mean, were there--


Konkel

No.


Pelka

There wasn't anything--you'd never call anything overtly hostile, or you know--there wasn't anybody who would say, "Well, people with physical disabilities shouldn't be in college." Or, "If you can't get in the building that's just too bad." Nothing like that?


Konkel

I don't remember anything specific on that. I mean, it's the kind of thing you just couldn't say. They might have thought it. God knows what people thought. You know, I mean, so-and-so would have been better off dead. In fact, I remember someone saying that to my mother. She told me that shortly after I lost my eyesight someone at her office--it might have even been her boss, yes, I think it was her boss--told her that I would have been better off if I'd died in that auto accident. She found that distressing but shared it with me. In a light-hearted tone, she shared it with me. But it must have been pretty shocking for her to hear. But on the campus, I don't remember anything like that.

The only other story that I can think of was, you know, one of these sort of pet peeves that I still nurture. I took Speech 1B from a professor, Dale Gronomeyer. I got into the class, and


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I discovered that it had been--that he'd been advertising in the Daily Cal, in the student newspaper, basically saying if you're a radical don't take your second semester of English or speech--. You had a two semester requirement, or two quarters on the quarter system, a two quarter requirement for taking English. He said, "Wait until I have this Speech 1B at such and such a quarter. Take it then." So I got in there, and everybody but me was hard left-wing. I mean, I was a liberal, I think everybody is at that age. But just extreme. It was sort of check your brains in at the door kind of left-wing. I ended up being the sole, sort of, like I say, devil's advocate in the class.

In fact, I remember turning in a paper. In retrospect, it seems pretty crazy, but it was a poem and the title of it was "IZAN." The title I had written on the underside of the paper so you could see it from the other side, but if you turned it over it was "Nazi." The whole thing was about, it was like several pages, basically about their sort of non--well, they weren't open-minded. They were, what I saw as a totally closed-minded approach toward all these different issues. Anyway, I started clashing with this professor, just challenging all this stuff. It was just a bunch of hooey. He was slamming me on the grades. Finally I went to him and I said, you know, "I'm trying to pull good grades. I'm going to go to grad school, for Christ's sake." He said, "Look, find some area where you overlap with me." So I ended up writing something about blind people, or maybe disabled people, by then. That was before PDSP, but anyway I wrote a paper about blind people. I think I called us "The forgotten colony." I thought this "colony" angle might be a way to overlap. But, anyway, I got through the class. But I ended up getting a "B" in the class and that one grade cost me the difference between Summa Cum Laude and Magna Cum Laude. In fact, I even remember the number 3.74329 was my grade point average, and 3.75 was the cutoff for summa, but--


Pelka

How do you spell Gronomeyer?


Konkel

Dale Gronomoyer, Gron-omeyer, I guess phonetic, more or less.


Pelka

Okay.


Konkel

But back to your question, I don't recall any overt instances of professors telling people, you know, we wish you weren't around. I mean, it's just--in that environment, you just couldn't do that.


Pelka

What do you recall of the relationship between the students' program and the administration? Now, you were off campus a couple of blocks, so the administration can't keep an eye on you from minute to minute. It's not like you're in an office in an administration building. But what was the relationship between the program and the administration?


Konkel

I don't have that strong a recollection. I tend to think that they weren't a problem. Although there must have been problems that arose. But let me say something a little--take it at a slightly different angle. It seemed to me that to a great degree PDSP was challenging existing institutions. But it seemed to me it was more the institutions like the state rehab department and basically the state rather than the campus itself. So we were picking battles, basically. Like welfare advocacy, that sort of thing. We were challenging this, that, and the other thing, fighting things. I don't--and maybe private charities, to some degree, that we were tangling with.



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Pelka

In your role there, you probably wouldn't have come into contact with the administration all that frequently, right. Your job was to provide services to blind students, so were there instances where you had to meet with the administration, representatives of the administration, that you recall?


Konkel

I simply don't recall.


Pelka

So you wouldn't know if there were particular administrators who were supportive, or less than supportive, anything like that?


Konkel

No, I tend to think maybe was there a dean that we worked with quite a bit. Maybe a woman--. But that's as much as I can recall, I'm sorry.


Pelka

I've got a group of questions about whether there were issues between, say, the administration and the program over things like office hours, and you know, the office culture, so to speak. But you really wouldn't have been cognizant of those things.


Konkel

No.


Pelka

What about the relationship to the Cowell Hospital? Do you recall?


Konkel

I don't recall any.


Pelka

Now, some of the folks at the program were--how would you put it?--sort of alumni of the hospital, or had been--is that right?--that had been living at the hospital for a while and then--


Konkel

Oh, that's a vague recollection, yes. It's something that I had so little involvement with that I don't have any specific recollections. That sounds vaguely familiar.


Pelka

Okay, so you don't recall being involved in any discussion or activity that was based on advocating around Cowell Hospital or the conditions there or anything like that?


Konkel

I guess I'm starting to recall that Cowell Hospital was mentioned a fair amount, but it was an issue that so clearly was irrelevant to blind people that it didn't--I never got involved in that. As I said, there are really two general categories of activity by PDSP. One would be this sort of challenging institutions and organizing the kind of activist sorts of things and the other would be providing services. And so I would provide services to blind students, or on behalf of blind students. Then I would get into activism, and there join with people with other disabilities. But in the area of other disability services, I simply wasn't involved. So, the Cowell Hospital, I think generally would have fallen into that other category.


PDSP activism

Pelka

Okay. Talking about activism, then. How did you see the relationship between PDSP and the Rolling Quads?



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Konkel

Huh, I'd forgotten about the Rolling Quads, I don't recall the--


Pelka

What did you know about the Rolling Quads?


Konkel

I just remembered being amused by the name, but I don't remember anything else about it.


Pelka

Okay, there weren't--


Konkel

Were we the Rolling Quads? I mean, it--


Pelka

Well, I think there was some overlap between the two groups. I mean, I think--


Konkel

Yes, it kind of sounds familiar.


Pelka

So you didn't go to any Rolling Quad activities that you recall?


Konkel

I don't--there's one story that I love, that I think involves the Rolling Quads, about the We Care Society. Have you heard this story?


Pelka

No.


Konkel

Oh, it was incredible. I showed up one day. Again, this is one where I'd like to take credit but I came in after it'd all been organized. But I discovered that we had planned--there's a private charity called the We Care Society. It was over towards the hills in the east, like in Menlo--not Menlo Park, Walnut Creek maybe it was in. Just from the name of it, the We Care Society, you can tell it would be, just sort of a--I mean, I don't want to sound negative about people who are trying to do things for the disabled. I mean, clearly they're well-intentioned. But what we were trying to do was steer people away from an approach toward the disabled that might be condescending. I mean, it goes back to this "Within the grace of God" speech that ten Broek gave. You know, just try to reorient thinking so that you don't think of disabled as a separate class or a separate--iIt's just a part of society. As you can tell from the stories I've told, the onset of disability can happen to anybody. Anyway, we're trying to reorient the more condescending, I guess you could say, charities and make them more aware. Something called the We Care Society would be a classic target. But, PDSP--. Maybe I'm jumping ahead to CIL now. I honestly don't remember which it was. But I think the Rolling Quads were part of it.

But anyway, we found out what night they were electing the board of directors and we organized this, it was like a convoy of all these quadriplegics in their vans, and your blind people, and just--you know, basically took over the organization, took over the voting. It was democratic voting, so we all just showed up and voted and took over the board of directors. I can't remember what we did to it, but the people who were there were just flabbergasted, horrified! I guess horrified would be another word for it. All these able-bodied people, older people, and all these young radical disabled people just came and took over. Every member of the board and the whole bit became our organization. I wish I had a follow-up story about changing the name, or whatever. I tend to think we did, but--.


Pelka

That's interesting.



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Konkel

Anyway, the Rolling Quads, I tend to think of that as involving the Rolling Quads as well as PDSP or CIL. Basically the same group of people.


Pelka

How about the relationships with other disability related groups. You talked about the We Care Society. What about things like Easter Seals Society? Do you remember any interactions between--?


Konkel

Yes, this is the essence of John Hessler. So we're at an Easter Seals Society convention, where, I don't recall. I remember we didn't have to fly in a plane to get there so it must have been, I don't know, in Oakland or something. Big, large crowd, maybe hundreds of people. Probably not a thousand, but certainly hundreds. The head of it, I believe, gave a talk. Then John Hessler was next as our sort of lead person. Then I gave a talk, and I think Judy Taylor talked. What I recall, though, was the way Hessler started. You had this guy giving this whole talk. You know, the Easter Seals Society, as you may know--back then, at least, was a target because it had this almost patronizing attitude. Again, I feel guilty saying that. Well, I don't feel guilty, but I shouldn't say that about people that are well-intentioned. But they sort of emphasized what people couldn't do rather than what they could do. Anyway, this guy gives this whole talk and probably is bleeding all this concern about the disabled and everything.

Then Hessler took the microphone, and of course it took a while for him to get settled. It was kind of a production for him to get up on the stage and get settled with a microphone. So, finally he's there at this microphone and he leans in, and the first word he said was, "Bullshit." And just--the whole audience, he said it with a big smile, but the whole audience just cracked up. Then he went on and gave a really personable talk, basically giving the, sort of, our view of disability, and what was wrong with the view that the head of the Easter Seals Society had just conveyed. But, that one word sort of characterized this whole attitude that PDSP and CIL and all these--the whole bunch of us--had towards the existing disability institutional structure, I guess you could call it.


Pelka

Do you recall any other relationships or interactions with Easter Seals?


Konkel

There may have been some clashes with them, because, again, it was probably the biggest and most established of the sort of older generation approach towards disability. So, yes, I don't recall specific instances, but I do think they were kind of a whipping boy for PDSP and CIL.


Pelka

How about some of the parents' movement groups. Well, ARC [Association of Retarded Citizens] wouldn't be an issue, but let's say UCP, United Cerebral Palsy, do you recall any kind of interactions?


Konkel

No.


Pelka

Okay, or the Lions Club, I guess. They were doing work on behalf of blind people back then, weren't they?


Konkel

[chuckles] I've got a personal story. My stepfather, I mentioned my mother remarried, that's when we moved to San Jose. So I was in San Jose for junior high and high school and my stepfather, whom my mother divorced right around the time I lost my eyesight, not for reasons having to do with my accident but--my stepfather was active in the Lions Club


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and was active in what they called the White Cane drive, I think it was. I remember these little white canes that you'd wear on the lapel, but they had a curved--I use a straight cane, but they had a curved handle like an umbrella handle or whatever. It was sort of ironic, it wasn't literally my stepfather but my mother's second husband. I guess it was a slight bit of irony that I wound up losing my sight. He looked like Clark Gable, that was the cool thing about him. But he was kind of a jerk in certain ways, and he ended up sort of shamelessly after I lost my eyesight, swooping in and taking over my bicycle. Of course, I had a racing bike with the handles curved down and he switched them. He got new handlebars so he could sit upright on it, being an older guy. My golf clubs, also my binoculars. He decided, "Okay, he's not going to use his binoculars." So he just sort of swooped in and appropriated all these things. Never talked to me about it or anything. Just somehow my mother ended up telling me at some point, "Oh, by the way, Jim has taken over, gone through your possessions." I was probably still at Stanford Hospital when he did all this. Anyway, that's my Lions Club story.


Pelka

No interaction with that organization?


Konkel

I don't remember it up at Berkeley, I really don't.


Pelka

Okay. How about relationships between you or folks at the program and other campus activism? Were there people who were involved in the antiwar movement or people who were involved in feminist groups or civil rights groups?


Konkel

I don't think so. We certainly felt a kinship with all of those groups, that general strain. So we were very much of the time, Berkeley late '60s, when we felt totally connected with all of that. I'm sure to the person we were antiwar and angry about the treatment of black people and so on and so forth. But it was kind of like we had this one wing and other people had other wings of this movement. But we saw ourselves as one with that outlook.


Pelka

Okay. You mentioned Don Galloway before. Were there blind people on campus who were members of other minority groups and what was the interaction there?


Konkel

Blind people were members, yes. There must have been. Certainly an Asian or two. I just, I just don't recall that many blind people, to tell you the truth. Dennis Fantin, Jan McEwen [Brown], Don Galloway down in L.A., of course Jerry Neufeld for that one year before he went to Canada to teach. After that, I don't know that I recall anybody. Well, a few people I was active with that were not students. Maybe people I'd met through the NFB, that sort of thing. But as far as Berkeley students, I just don't recall them. It's ridiculous, since that was my job for two years. I can't even remember the people.


Pelka

Do you recall whether the PDSP had links with any kind of national disability organizations? Were you aware of what folks were doing on the east coast, let's say? Did people talk about that?


Konkel

I had the feeling that, again, it must have been hubris from being there, from the sort of Berkeley attitude, but I have the feeling that the action was in Berkeley, not New York City or Washington D.C., or Philadelphia. I just don't remember anything specific about other organizations although there must have been something going on out there. I mean, I think now that we were probably excessively egocentric.



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Pelka

So you don't recall anyone talking about, like, the Metro fight in Washington, DC, or Fred Fay, or Hugh Gallagher, folks like that?


Konkel

Nope.


Pelka

Okay, okay, Did you all feel like pioneers and making history?


Konkel

Oh yes. Absolutely. Absolutely. Maybe we were idiots, but that was certainly the feeling I had.


Pelka

What was that like?


Konkel

Oh, it's exhilarating.


Pelka

Do you want to elaborate on that?


Konkel

Well, it's something that we just felt in our bones. Because we were disabled, or almost to the person, and we'd lived it in our lives, we had absolute certainty that we were helping disabled people. Not really by opposing, say the California rehab department or the federal version of it, but by supplementing it because it was just this sort of missing element. Joan Easterbrook was blind, she was my rehab counselor, and I don't remember anything negative about her. She seemed like a nice gal. But she was so distant that she didn't play a role in my life except to cover my reader fees and that sort of thing. I don't remember her, sort of, inspiring me in any sense or empowering me in any sense although I suppose she was involved in me going to the rehab, I mean, the Orientation Center. She or her counterpart down in San Jose. But we just--we knew that you needed to have disabled people there fighting battles for the disabled, by so doing, letting disabled people know that the only constraint on what they did was self-imposed, that a disability didn't prevent you from doing pretty much anything. I mean, I wouldn't be much of a truck driver, but there aren't a lot of jobs I can't do.


Pelka

Did people talk about this sense of history? I mean, did you all ever sit back and say, "God, we're doing something. We're the vanguard here."


Konkel

We probably avoided being that absurdly self-congratulatory, but certainly we had that feeling. I mean, I noticed somebody hearing this sort of view for the first time. They must be thinking, what a bunch of arrogant s.o.bs, and I'm sure we were. I still am. But we had that sense because we were, I think the first organization like that. Certainly not the first organization of disabled people, as I said, the NFB was very much militant. But I tend to think that was the forerunner, if anything, of PDSP and CIL. I believe the blind were organized ahead of other disabilities, not to take--. You're much deeper in this right now, probably than I am, so maybe I'm wrong by that, but that's my recollection.


Pelka

But no, what I would call a "Citizen Kane moment." I don't know if you remember the movie?


Konkel

I forget the movie, to tell you the truth.



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Pelka

There's a part where they're founding or buying a newspaper, and they draw up this list of principles. Somebody says, "We ought to save this, this is going to be historic one day." Nothing like that?


Konkel

I don't think we were quite that--quite that full of ourselves.


Pelka

Okay. Let me just look how we are on the tape here. Okay, we've got a little bit more because we're going to get into another big topic. How are you doing?


Konkel

Fine.


Pelka

I know that around this time there was an effort by the California government to cut the attendant program on which a lot of folks on campus were depending. There was a campaign organized by folks to stop that. Do you have any recollection of that? Did you have any involvement in that?


Konkel

Sounds familiar. It's the typical kind of problem that we would have been involved in. Fighting the state for more money in one way or another.


Pelka

But you don't recall that as a particular instance above any of the others that might have occurred?


Konkel

No. Again, I was involved with blind people in terms of services and with sort of the politics of the organization, but I really didn't get involved in doing things on behalf of people in wheelchairs and that sort of thing. So that's the sort of thing where I simply wouldn't have--I might have overheard discussion of it, but I wouldn't have had a role in it. I did have a role, in a sense, of promoting the organization, PDSP, and of helping blind people but not of helping people in wheelchairs.


Discussion of Ed Roberts

Pelka

Okay. I want to talk about this group called the Disabled and Blind Action Committee of Northern California. Do you recall that?


Konkel

No.


Pelka

This isn't anything you were involved with?


Konkel

Does it sound familiar? No, I don't really--. Was it at that time, you think?


Pelka

Well, I'm not sure. I think this was something that Ed Roberts put together in an attempt to demonstrate to people that they were advocating with--that there was something beyond just the CIL and PDSP. You know, if we call ourselves the Disabled and Blind Action Committee of Northern California, maybe these people will think we've got folks all throughout Northern California, is the sense I got. But I was just wondering if you were involved in that effort at all.



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Konkel

No, no.


Pelka

So, I had a bunch of questions on the [DBACNC]. It wouldn't really be very useful.


Konkel

You know, I should throw in something here. If I could get a little down-and-dirty about it. I wasn't a big fan of Ed Roberts. Because he was the forerunner of this, I have to tip my hat to the guy. But I didn't like his personality and I just idolized John Hessler and it was sort of--I don't know if there was any competition between those two guys, but it was almost like there was an Ed Roberts wing and a John Hessler wing to this movement. At least that's the sense I had, and I was fiercely loyal to Hessler. Ed wasn't around very much, so he didn't play a big role except in maybe the early part of this. But I found I resented his presence if I felt like he was being given deference over John Hessler in any sense. I don't know if those guys were--they certainly weren't buddies, but I wonder--. They both passed away now. But if we could bring them into the room right now, I wonder what they'd say about that, if I'm right that there was almost a competition between them.


Pelka

Hang on a second.



[Tape 3, Side A]
Pelka

You were talking about the relationship between Ed Roberts and John Hessler. Do you want to keep going on that? You said that there was almost like an Ed Roberts camp and a John Hessler camp. How did you see this? And what made you think that?


Konkel

I guessed I picked up--Ed was thought of as the leader, in the sense that he was the initial one, apparently, that headed the movement. My sense was when he went to Palo Alto, Hessler took over. Hessler was considerably more dynamic. They were both bright people. Ed had a very different disability. I guess it was polio, severe polio. So he was very small in stature and had kind of a small voice. He had kind of a chuckle that I didn't like where he told jokes that weren't funny and chuckled at them with this kind of a heh heh, that kind of drove me up the wall. So I just had this sense that I didn't like him. He was--you know, he was in Time magazine and all this stuff so he was a very important person in the disability rights movement. But when he was there, it was kind of a question--I think people had to sort of decide who to look at as the leader. I ended up resenting his presence to some degree. I don't want to overplay this, I mean, it wasn't important. It didn't, sort of, keep me awake at night or anything. But I didn't like it when he was looked at as the leader in lieu of John Hessler, I guess would be the clearest way to put it. I have a sense that people sort of fell into one camp or the other. Did you like Ed and see him as the continuing leader of this movement, or was Hessler your guy?


Pelka

Did that have an impact on the program at all? Or on how things unfolded, do you think?


Konkel

I can't think of how it would have directly. I suppose it's just the normal sort of personality conflicts that would arise and interpersonal situation--I don't--I can't think of any particular--.


Pelka

Was there an instance that you can recall where Ed Roberts may have exerted some kind of influence on the center that, you know, even though Hessler was the head, Ed Roberts' presence somehow changed the way something might have happened or the way the center might have behaved in a certain way?



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Konkel

No, I draw a blank on that. They were both aggressive, I mean, in a positive sense. So I don't know that substantively there would have been a difference in the way they approached things. I mean, a typical way to divide people in that sort of an environment would be "how militant" are they. I think you can call them both militant. I mean in a very positive sense. They weren't angry, angry young men or anything. For instance, with blind organizations the NFB is thought of as the militant organization and the other one--


Pelka

ACB [American Council of the Blind].


Konkel

ACB, is thought of as the more "catch more flies with honey" kind of an approach. But I think Hessler and Ed Roberts were both pretty assertive.


Cross-disability activities of PDSP

Pelka

We talked about this a little bit, but I just wanted to see if we can wrap it up or if you have any other thoughts about this, and that is the development of a cross-disability awareness at the students' program. Up until then, and to an extent today as well, people with disabilities are kind of divided into blind people, deaf people--. You know, there are organizations that tailor specifically to folks with cerebral palsy, folks with polio, folks with MS [multiple sclerosis], even though somebody with MS might have very similar problems to somebody who is spinal cord injured. There's a spinal cord injury foundation; there's an MS society. So now we've got this thing called cross-disability awareness. Can you recall that being discussed as a concept?


Konkel

Yes.


Pelka

How, how so?


Konkel

John Hessler, particularly, right at the beginning of my interaction with PDSP said, I recall specifically, that John was saying that an important element of what we're doing is bringing disabilities together more actively and that was one of the reasons that they hired me. So that was a conscious effort, a concept that was discussed and that was important to the essence of PDSP and CIL. Sort of, more power by uniting rather than operating separately. Maybe that wasn't new to that particular point in time, I mean, it's hard for me to believe that that one little suite that I happened to live next door to is the beginning on planet Earth of the sort of disabilities acting together. But I don't recall other organizations. Like the Easter Seals Society, for instance, was, first of all, I think more run by able-bodied people than disabled people. Secondly, I don't know that they have any dealings with blind people. I think of that as more, like you said, spinal column type injuries and polio, that sort of thing. So in terms of bringing disabilities together, I thought of us as pioneers in that sense. Maybe not strictly pioneers, but--. I would say after the, sort of, disabled people doing it themselves, the second most important concept would have been bringing disabilities together to sort of multiply our power.


Pelka

Did you do anything specifically for that goal? I mean, did you ever design an action or a program and say, "The idea--what we want to do is we want to bring in a whole lot of


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disparate groups, different people with disabilities, and the way to do that is do such and such?" Was it ever that overt?


Konkel

Well, in terms of who was on the paid staff, it was overt. It was already in place when I showed up. They consciously didn't want an organization of quadriplegics, they wanted an organization of disabled, even though the quads were the biggest grouping in that organization. So they had about as much diversity in terms of disabilities as you could want, as I said, except for the obvious fact that they had no deaf people on the staff. In fact, maybe they did end up with someone there. I sort of have a vague recollection, but I'm not sure.


Pelka

Was there ever a conscious effort to foster cross-disability awareness among different people either on the staff or in the student population?


Konkel

I can't think of anything in terms of the student population. Except that the organization, by its very nature, was dealing with students and we were all in the same room, sort of working with students. So just by our very existence, we were bringing students into contact with another. So, for instance, you ended up with this friendship, Bob Metts and Dennis Fantin. I don't know that they would have met had it not been for PDSP. So you, I mean, just to pick out one example you had a lot of--the disabilities are working together all the time in that organization. So just by its very existence it's doing what you asked about, integrating the disabilities and making them, therefore, aware of one another.


Pelka

Let's say in terms of the staff, would you be asked to talk on any kind of a formal basis to other people on staff and would someone say, "Dave today is going to give a talk on issues of importance to the blind community. We want everybody to show up so that you get a sense as to what blind students have to deal with as opposed to what students in wheelchairs have to deal with."


Konkel

It would not have been something formal like that, because it was happening all day long, all the time. So you never would have had to structure it, or say, "Let's have a--"


Pelka

--in-house whatever.


Konkel

Yes, yes, it was all informal and happening automatically.


Pelka

I recall a group on the east coast putting together a conference where it was like an overnight, a three day thing. They deliberately had structured it so that, for instance, blind attendees would room with somebody in a wheelchair, where they might never had done that before. Its like, we want to foster this kind of cross-disability awareness, so we're going to have these people live together for a couple of days. Nothing like that, that you can think of where people sat down and said, "We're going to structure this so that"--?


Konkel

No.


Pelka

Okay. You've talked before about the deaf community not being represented. Do you recall any efforts to do any kind of outreach to deaf students or to deaf organizations?


Konkel

I remember that the subject had arose, just being obvious. Maybe, maybe it was a goal that was reached after I left or late in my time there. But it would have been something that was


155
in keeping with the overall goals of the organization. I don't remember specifics beyond that. I kind of remember--no, the deaf person, I remember, was out here. He was in the State Department. I had this recollection--the guy wasn't stone deaf or whatever the correct way to say it is--but was very hard of hearing, but--. So I don't think that there was ever a deaf person that I interacted with out there. But as I think back, it is a curious omission, and I'm sure it's something that we discussed. I wish I recalled specifics for you.


Pelka

Okay, now you had organized this NFB chapter on campus. Then you'd left the NFB after that conference in the Carolinas, was it?


Konkel

Yes, South Carolina, in Columbia.


Pelka

Yes, okay. What kind of interaction was there between the Physically Disabled Students' Program and--. Did this chapter of the NFB survive after you left?


Konkel

I don't know.


Pelka

Okay.


Konkel

I just never--I lost interest in the NFB.


Pelka

So there was no relationship, then, between let's say the NFB in California and the Physically Disabled Students' Program.


Konkel

Not that I recall.


Pelka

Nothing. They never contacted you, or you never contacted them.


Konkel

It would have been me. I was the only blind person paid by that group the whole time I worked for the group. Oh, that's not true, Jan McEwan [Brown] ended up getting involved. She ended up getting paid but I know you don't want to get into the CIL yet, but later on Jan was paid, too. But it wasn't that we refused to deal with the NFB, this is just sort of a different angle on the same subject. As I said, the NFB was so established at the time that we wouldn't really have had a need to work with them. Also, I bet they wouldn't have wanted to work with another group because they had their own. I mean, they'd already achieved a lot of things on their own. They were like the senior disabled group movement, I suppose in the country. So I don't think they would have wanted to dilute their power by letting other people get in and sort of ride their coattails or whatever.


Pelka

How about the ACB?


Konkel

No, I don't remember any activity. But I think we would have--we were much more like the NFB than the ACB, in the sense of being more aggressive, if you will.



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Writing the grant to found the Center for Independent Living

Pelka

Okay. Just going through my list here. Okay, let's move on, then, to the CIL. Do you want to take a break, or is this--?


Konkel

No, I'm fine.


Pelka

Okay, okay. First of all, when did this happen? What period of time are we talking about now, getting into the founding of the CIL?


Konkel

My first year at PDSP was autumn, '70 to, say, '71. I think late in that first year--. [phone rings] [break]


Pelka

You were talking about late '71--.


Konkel

I started to get wind of this concept of broadening it from the student population to the population at large. I think, in fact, we'd been doing that to some degree. I don't remember with blind people particularly. But, in general the people in wheelchairs were interacting with non-students, I guess you would say. Here again, I wish I could take credit for the idea, but I had no role in the idea except to be enthusiastic about it. When I was first told that they were moving in this direction, I thought it was a fine idea. I don't know who to credit for that, but it seemed like a natural evolution.

It was all the same people and it was more than a name change, but to some degree that's what it was, so that the effort began to develop, the idea, and how we would structure it, what we would call it, so on and so forth. So we had a lot of dealings with that. Maybe fairly quickly after I got to PDSP, we started working on that. This I'd forgotten until Chuck Cole told me recently, [he] lives up in Boston, and we have lunch whenever he comes to town. He reminded me that Ruth Grimes and I wrote the proposal to establish PDSP. I'd forgotten that. We'd sort of set ourselves aside and she and I crashed on it and wrote this over the course of a couple of weeks, wrote a proposal to the RSA, Rehabilitation Services Administration, which is the federal organization that oversees the, I guess oversees, the state rehabilitation agencies.


Pelka

You mean the grant for CIL?


Konkel

Yes.


Pelka

Okay.


Konkel

Yes, the grant proposal for the CIL. I think that's correct. I mean, Chuck Cole assured me it that it was correct. I recall working with Ruth Grimes, but I--yes, it must have been for that. So it was a proposal that went to the federal government and then later in 1971, I'm pretty sure it was '71, I flew out to Washington, D.C., and met with Ron [Newman?] who was the commissioner of the Rehabilitation Services Administration. So he was basically the federal, you know, the federal officer--or federal person who was in charge of rehabilitation for the country. I guess he's the main disability guy for the U.S. government. I met with him and he had this great big office. It was like an auditorium kind of thing. It was kind of like a living room area, you know, sofa and stuffed chairs and coffee table and


157
so forth. I sat there with him and gave the presentation about this, about setting up CIL. He asked a lot of questions, very friendly guy. So it wasn't an antagonistic conversation, although I was in no sense sycophantic. I tried to be very careful to explain that the rehabilitation system, while it was performing an important function mainly by paying the bills, paying for my readers, for instance, and, oh, I don't know if they paid for attendants or if that was through Medicare, but anyway, while the rehabilitation institutions of the country were very important, they left this major gap which is the sort of on-the-ground interaction where people who are disabled are challenging institutions to become more open to disabled people. Advocacy, I guess you'd say. Welfare advocacy, direct services, just all the things that PDSP had been doing and that by establishing a pilot program we could demonstrate that the cause of rehabilitation would be furthered by filling that gap. I met with him, for it must have been probably an hour, certainly an hour. Then I flew back to Berkeley and I can't remember if we got the go-ahead while I was in Washington or--maybe I came back with the fifty thousand dollar grant that set up CIL. Certainly not with the money, but I mean, maybe it was approved on the spot or maybe very quickly afterward. It certainly wasn't a long time afterward, because I remember coming back and kind of feeling like a hero because I'd gone off and fought the battle and won.


Pelka

Did you take this trip by yourself or was there somebody else?


Konkel

With a friend.


Pelka

Okay, with a friend. But was the friend connected with--?


Konkel

No.


Pelka

Okay.


Konkel

No, just a friend.


Pelka

So you were the representative of the folks who were coming together to float this idea, the CIL idea.


Konkel

Yes.


Pelka

And when precisely was the trip, do you remember?


Konkel

I think it was spring, 1971. If somebody put a gun to my head and said, "Tell me," I'd say April, '71. Certainly there would've been a long lag in the federal government and with all the rubber stamps and all this nonsense that you need. But, yes, that was, that was absolutely true. I was the lone person interacting with [Newman?] pitching the CIL and that's how CIL got funded. Fifty thousand, I remember clearly. For a year, the first year.


Pelka

I want to go back just a moment to the drafting of the grant proposal, okay? What do you recall of the discussion while you were drafting the proposal?


Konkel

I remember we were interacting with a document, a federal--. All right, the PDSP was funded, I think, under the Department of Education. There was some element of the Department of Education that had three, let's see, upward mobility, outward bound, and special services. There were like three sections of some sort of an office within the


158

Department of Education, so PDSP was funded federally through the education part of HEW. At that time, education was with the other elements, so it was funded through the Special Services branch of the something or other office under education. CIL was funded under the welfare part of HEW, through as I said, the Rehabilitation Services Administration which was the head rehab agency for the country, so there was something, there was some sort of--I just can't pull it up. The Rehabilitation Services Administration had these special projects or something or other. But they had this written material that laid out guidelines for people applying for funding through this particular program. So Ruth and I were addressing it. We were sort of parsing, parsing it out. Figuring out what arguments to make under which elements of this document. I'd be curious what Ruth says about this. Again, I wouldn't be saying all this except Chuck Cole said, "Yes, you're getting Alzheimer's. Konkel, you and Ruth wrote the damn proposal." You know, he remembered--he has a great memory, Chuck Cole.


Pelka

Yes, I think we're going to be looking him up. He's in Boston, right?


Konkel

Yes.


Pelka

Yes, he and I used to be on the BCIL board of trustees together.


Konkel

Oh really, so you've met Chuck?


Pelka

Yes, this is years ago.


Konkel

Oh, okay. I didn't know whether you had any connection with this. Yes, he's a very nice guy. His health has deteriorated somewhat in terms of getting around. You know, mentally, he's a hundred percent. He, sort of, has a little trouble managing my stairs out here and that sort of thing, but--.


Pelka

I'd just like to call him anyway, just to say hi. Okay, you've got this grant proposal. You've been to Washington, you've got the go-ahead. Okay, now you're back in Berkeley. What happens next?


Konkel

I wish that I could answer for you. Certainly we had additional funding so we must have brought on new staff. I think that's when Jan McEwan, I don't know that she--I think Jan McEwan worked for CIL and not for PDSP. So, I'm sure we brought on additional staff with this additional funding.


Pelka

Now, "we" being--I mean you're saying "we" brought on additional staff.


Konkel

PDSP.


Pelka

Okay, so what's happening is that PDSP is kind of the umbrella organization for the establishment of this new thing, the CIL. So were they, like, sharing offices at the time?


Konkel

Yes, I think it was all the same, yes. It was the same group. Now it could even be that PDSP went out of existence the day the CIL opened. That would be my guess. I wouldn't be shocked if PDSP somehow stayed there as sort of a shadow of CIL, but essentially the same people--. Is that true? The same people--? Oh, gee.



159
Pelka

Well, there would still be disabled students that would be--.


Konkel

Yes, there was another facility. Where the heck? Gosh, it's embarrassing that I can't remember that.


Pelka

Well, back up a little bit. There's something called articles of agreement, okay. What was that and what was involved with that?


Konkel

That was, I believe it was the organizational charter that established CIL and I don't recall if that was part of what we had to do for the Rehabilitation Services Administration. I guess if you become a nonprofit corporation, maybe that was it, maybe we became a nonprofit corporation. CIL incorporated, I'm not really sure. But it was a formal legal document that established CIL, and I remember clearly that there were nine of us who signed it and therefore were the cofounders of the CIL. That document was the founding document, as I recall. I'm trying to think, it would have been John Hessler, Herb Willsmore, Judy Taylor, Don Lorence, Larry Langdon, Konkel, Bob Metts--I'm up to seven. I'm tempted to say Chuck Cole and Ruth Grimes as the last two. No, Hale Zukas would have been there, that would have been eight. Maybe Chuck Cole and Ruth Grimes and not Don Lorence, I'm--. Or Phil Draper, maybe, was thrown in there. I'm not exactly sure. But there was definitely nine of us. I remember specifically that I was one of the nine, and so was Bob Metts, because again, we wanted to have the variety of disabilities involved. Yes, it would have been Hale Zukas, Konkel, Metts, certainly Hessler, Willsmore, Taylor, after that I'm not sure. But I assume that document is still somewhere, it must be a legal document filed away in some--.


Pelka

Was it purely a kind of corporate document? Or was there anything in it in terms of principles of independent living or anything like that?


Konkel

It was definitely a formal document and I'm sure reading it would give you a sense of what we were doing. I don't think it--I think it steered clear of sort of purple prose. It wasn't a--what do you call it--a communiqué.


Pelka

A manifesto.


Konkel

Manifesto, exactly, it wasn't like a manifesto-type militant document but clearly would give you the flavor of what we were trying to do.


Pelka

Okay, now at PDSP--I think I'm getting way ahead of myself. You went from working at PDSP to working officially at CIL? Is that right?


Konkel

Yes, yes.


Broader role at the Center for Independent Living

Pelka

How did your job change? Was there a change in your job description and a change in what you were doing?



160
Konkel

The only answer I can give you is that I recall the feeling that maybe my role was broadening. I don't remember being as directly involved with individual blind people, with blind students. When I was at PDSP I had a list, I had a little card catalogue, Braille cards. I remember when I was at Orientation Center they taught us to have our, what are they called, Rolodex type thing. These 3 by 5 inch cards. You do them in Braille and you do them upside-down so you can reach your finger down into the desk drawer and read it with the flat of your finger. So, you know, at work I've got one of these things. But I had one back at PDSP and I had the names and phone numbers of all the blind students and I was interacting regularly with them. At CIL I remember that we were, sort of, broadening our net. So I was doing much less of this person to person interaction. For example, Jan McEwan [Brown], I believe was an English major, very articulate gal. She ended up writing for our newsletter. So we ended up producing a newsletter under CIL. She wrote a column. I think it was called "Write On," W-R-I-T-E, I think was the title of it.



[Tape 3, Side B]
Pelka

Sounds like it's raining.


Konkel

Yes.


Pelka

You were talking about someone writing a column called "Write On" for the CIL newsletter.


Konkel

Right, Jan McEwan [Brown] was the one who wrote that. So that was by way of giving you the flavor of how my work had begun to change. I was still paid on a part-time basis because I was a full-time student. But I just remember the sense that we were more communicating to bigger groups through the newsletter and, I guess, speaking to groups. I must still have been--. I bet initially we were working, still, with the student population. But, again, trying to broaden it.


Pelka

Okay. Who was the director of CIL at that time?


Konkel

I believe John Hessler started as the director, but I distinctly remember Larry [Biscamp] taking over at a certain point. It could even be that [Biscamp] began as director of CIL, but I tend to think that John did. Then for reasons that I simply can't recall, Larry [Biscamp] took over.


Pelka

Did you continue contacts with folks at PDSP at this point? Or did you stop working for PDSP entirely?


Konkel

The second. I hope you've talked with somebody who has a better recollection than I do. I tend to think there was a separate facility.


Pelka

Yes, there were separate offices.


Konkel

Good.


Pelka

So, I'm just wondering, though, if you'd kept kind of in touch with what was happening in PDSP in terms of the changing--the office changing, and the people there changing or new people coming on. Anything like that?



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Konkel

Again, I feel badly my recollection's so poor. But maybe Judy Heumann came into PDSP while I was still--while I was working at CIL. Maybe she became the director of PDSP.


Pelka

What about Dennis Fantin? He came on board at PDSP at about that time?


Konkel

You know, I don't recall him being on the payroll, but certainly he was involved. It could be he ended up taking over my job at PDSP when I started working at CIL.


Pelka

Yes, I think that may be what happened.


Konkel

Yes, that sounds right. I think Jan and I worked at--. So there you get a sense for what CIL did; it brought more money into the game. So you have three blind people instead of one on the payroll. With Jan and I at CIL. Yes, that sounds right.


Pelka

What other people made this move from PDSP to the CIL? I mean, John Hessler would be one, you would be one. My sense is there was this sort of mass migration from the one to the other. Is that what happened and who else came on?


Konkel

Gee. It seemed to me it was pretty much the whole group. Certainly it would have been Bob Metts, I would think, Herb Willsmore, Judy Taylor--. I'm not very good at this, I'm really flabbergasted that I've forgotten so much of this stuff, gee!


Pelka

Larry Langdon?


Konkel

Yes, I would think so. But it was all the same group. I mean, there was certainly no tension between the two or anything like that. It was just all the same group and maybe, maybe we had two different facilities and both to some degree--both in--.


Pelka

So what, what was your job again at CIL now? You weren't now working with individual blind students. You said you kind of expanded, you weren't working with individuals so much. You were doing outreach then?


Konkel

Yes, exactly. Again, organizational things. CIL was an organization that needed to be run and so I was outreach to blind people, but probably more than anything working with Hessler and other people just to run the organization. You know, what exactly that means I can't tell you but we've gone over a couple things already. Like, CIL had this articles of agreement, and that had to be written. The proposal had to be written, and we had to get the funds. Administering it, we'd have to deal with the federal government. Just like running any organization. Basically I was helping to manage it, would be the way I'd describe it.


Pelka

You've talked about working with John Hessler. What was working with Larry [Biscamp] like?


Konkel

Well, he was easy to work with. He was not as sharp as John or as dynamic as John. So, I think that with John I felt like I was dealing with certainly an equal, and probably a superior in the sense of leadership. With [Biscamp] I had the feeling I was pushing more than being led. I don't know if that's being fair to Larry because he was new to the role. But I had that sense. Again, it's a lot--it's decades and decades ago. But that's the recollection I have.



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Pelka

Are there specifics that you can attach to that? Like a proposal you would bring up or something that would happen where you felt like you kind of had to push for something whereas before you might not have?


Konkel

I don't remember the specific substance. But I remember the sense that we would be in a room together, maybe a group of us, and that Larry wouldn't be leading so much as being pulled along by the flow of thought. Again, I might be unfair to Larry in the sense that he was, you know, that was the beginning of his role, of his leadership of CIL.


Life at CIL

Pelka

Was there a change in office culture, office style? You described PDSP as being this kind of laid-back, more or less informal group situation. Was that the case at CIL, or were there differences?


Konkel

I think the facility was bigger. There were more rooms. I remember a hallway, different rooms. So I don't remember it as much being--. At PDSP, there was one room particularly where people interacted. I remember, maybe a little less "B.S."-ing and kibitzing and that sort of thing. You know, maybe it was a more serious place, people separated a little more. More formal. Certainly it wouldn't be bureaucratic with a lot of layering and that sort of business, because that just wasn't the way we operated. But on the spectrum, we definitely moved that direction. Just because it was a bigger operation with more money involved, more people involved. You know, you start a newsletter, you've got a deadline all at once. You just have these things that are--you have to organize.


Pelka

You've got a grant proposal, you've got--. I would assume you're writing reports to the grantors, things like that.


Konkel

Yes, keeping the federales happy.


Pelka

Federales, yes.


Konkel

We federales. [laughs]


Pelka

Now, you said that PDSP had a fairly sizable budget. Sizable isn't the way you put it, but you had money to do what you wanted to do. Was that the case with CIL? Did it feel like you had all the money you needed or was there a sense that you had budget constraints? How did that work?


Konkel

I felt more like we were sufficiently funded. It wasn't sort of a shoestring operation where we were worried about being low on funds. I think it was funded sufficiently. We weren't throwing money around, but I have the sense that if you have two choices, we were in the well-funded category and didn't have to worry about making resources stretch.


Pelka

It wasn't like, "Well, how are we going to make the payroll next month?" or anything like that.



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Konkel

Right, yes, no, I didn't have that sense at all. Maybe somebody else does, but I don't. While I was there, I don't recall that sense.


Pelka

You're in an organization now that is not geared specifically to students. I mean, its still a university town and everything, but you've got this larger community now that you're a part of. Berkeley, Oakland, the surrounding area, maybe. And not everyone is on campus, a student, professor, whatever. What do you recall of the relationship between CIL and the larger community?


Konkel

Larger community of disabled people and organizations?


Pelka

Well, let's begin with that first, then you can move on to just the Berkeley/Oakland community. Let's say, first of all, other disability organizations.


Konkel

Well, again sounding ridiculously egomaniacal, but we felt like we were leading rather than following organizations. In fact, these stories I told you about the We Care Society, the Easter Seals Society, that might have happened under CIL, I don't recall specifically. I recall the incidents specifically, but I don't recall the precise timing of it. Certainly it was after I had been at PDSP quite a while, so it was sort of in that period where the two sort of blended together in a great sense.

But with CIL, I recall us feeling like we were challenging other organizations. It was almost a--what would you say--a message that we were getting out. Just like you'd have for anything like that, anti-Vietnam war movement and so forth. We were the disabled, the sort of pull ourselves up by our bootstraps kind of thing. You know, think of yourselves as people who have a disability but don't define your life by it. You know, focus on what you can do. Just kind of getting this message out to people and other organizations involving the disabled--. Well, if they're organizations of the disabled, that's one thing. But what we're dealing with would be more state rehab, city government, on things like curb cuts. Accessibility was probably the biggest single issue that arose, primarily for people in wheelchairs. As far as the broader community, I don't really think--I don't think we had a direct role, like, I don't remember us giving speeches to the Chamber of Commerce, or that sort of thing.


Pelka

City council?


Konkel

Yes, I don't really recall that.


Pelka

What about other community groups? Let's say, Black Panthers, or Hispanic groups, or union groups, or anything like that? Do you recall?


Konkel

No, I don't think so. Now, I should say, I wasn't at CIL--I don't want to sort of speak about the history of CIL, I was only there at the inception of CIL and I have no clue what they're doing now some thirty, more than thirty years later.


Pelka

How long were you in CIL?


Konkel

I was there a year and a half, would be my recollection. Yes, CIL started in the summer of '72, if I remember correctly. Maybe even July 1, '72, if I had to pick a date out of thin air. So I was in grad school. I started grad school in '72. It was a very difficult program I was


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in. I went through a year of grad school, and I was in, I believe, the first semester of my second year of grad school. I had this very bright graduate advisor, Arnold Meltsner. Really had this kind of high-pitched voice, and talked fast, and was just smart as a whip. He had a meeting with me, and he said, "David, I admire what you're doing. I think this stuff is great, I feel so committed to all this stuff. You've got to choose one. Choose this business you're involved in with the disabled, or choose graduate school." I said, "Okay, I choose graduate school." [laughs]


Pelka

What was the degree you were--?


Konkel

Well, it was the graduate school of public policy. Actually, it was a very difficult school with bright people. But I ended up worrying that--being disabled, I wanted to be sort of well-armed when I got out into the working world, and I started to think, "Well gee, public policy, I don't know that people will know exactly what it is I learned." You know, to go out and say you got a degree in public policy. So I finished the public policy but I wound up switching to the economics department, because I thought that would seem like a harder degree. A little better, sort of, better for the job market. So that this year, 1973 to '74, I was still in the graduate school of public policy, but I was taking--all but one of my classes was economics. So, in fact, it was a little bit funny that Arnold Meltsner focused on what I was doing when I was only taking the one public policy school [course] but I'm pretty sure that was the quarter in which this discussion took place.


Pelka

And it's Meltsner, M-E-L--?


Konkel

M-E-L-T-S-N-E-R. He was also, he was a very nice guy, he also was on my dissertation committee. No, not my dissertation committee. That had to be all Economics professors. But my orals, when I took my orals in economics he was on the panel. He was really funny about it. He said, "I don't know anything about economics. What am I going to do with a bunch of economists on a panel?" I said, "I don't know, but I'm required to get somebody from outside the economics department." And he said, "I tell you what. All right, if you read this book, I can ask you questions about that and then I won't look like an idiot on this panel." So anyway, I go into my orals, and it was just--. The way they set it up was so, what's the word, unsettling, unnerving, where they all sat across from me, all five of these professors, and they weren't allowed to give any feedback. You know, when somebody asks you a question you give an answer to the person that asked the question, they say "Oh, that makes sense," or something. Zero feedback. So about an hour into the orals, I'm just totally worn down. I've used up lines like, "Oh, that's a good question. I've never thought of that before." You know, I'd used them all up and I was just feeling totally disarmed and so forth. Then it was Meltsner's turn and Meltsner started off with something like, "Have you ever read anything on such-and-such a subject?" He was referring to this book that he'd sort of assigned to me. I felt like climbing over the table and hugging the guy, because I had something I could say on the darn orals.

Anyway, that was the end of my deal in CIL, and as I said at the beginning of the interview, I had thought of this whole involvement as being something that I would do temporarily while I was a student. I didn't want to sort of go through life pretending I had no disability. I wanted to do it while I could do it at no sacrifice to my later life. That discussion with Meltsner was the point at which I had to just drop it. I haven't gone back. I'm not involved in any of that sort of thing anymore.



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Pelka

Let me back up, though, before we get to that point. Still at the CIL--.


Konkel

Okay.


Pelka

You talked about access as an issue, you know, and curb cuts and ramps, things like that. Let me mention a few other issues. Employment, did people talk about employment and employment discrimination?


Konkel

Yes, we must have. At the PDSP, of course, we were talking about students and so there really didn't arise a lot--I don't remember a specific discussion of it. Yes, I would say the emphasis was primarily on the practicalities of daily life, particularly for people in wheelchairs, particularly for quadriplegics and enabling them to live as independently as possible, in as normal a situation as possible. Clearly they would need an attendant at various points of the day, that sort of thing, to help them get up in the morning, that sort of thing, so I think our focus was much more on the physical problems or physical challenges of disability than on going out and looking for a job. I don't recall a big campaign threatening lawsuits over discrimination. Maybe that happened, or maybe it happened after I left, but I just don't remember that.


Pelka

Workplace accommodation, were people calling and say, "I got this job or I'm going to get this job but I can't get my wheelchair under the desk." Or if its a blind person, they need certain accommodations to be able to do their work, "How do I go about doing that?"


Konkel

Yes, very much, that exact kind of situation. Or a case where an employer, maybe, is innocently asking, "What the heck do we do?" How does this blind person do this, or this person in a wheelchair? You know, here's the job, how can this happen? So not a case of discrimination but just getting to the practicalities of how you do things, whether, like you said, it's getting under your desk or reading material or whatever.


Pelka

Okay. What about transportation as an issue? How did that come up? You talked about getting out, going to the--


Konkel

We Care Society.


Pelka

We Care Society, yes, and loading everybody into vans. How about mass transit, buses, subways, things like that?


Konkel

Yes, that was definitely part of the substance of what the CIL did. It would be things like getting funding for modification of vans, where you take out the front seat and put in the brackets that hold the wheelchair in place and hand controls. Mass transit, having it--there again, blind people really didn't have that big a problem, because people--I started taking buses as soon as I started at the Orientation Center, as soon as I was able to get around pretty decently, I'd take a bus home to San Jose. It's just not that big a problem. But, for wheelchairs, that's just the sort of day-to-day stuff that was happening all the time. Dealing with mass transit, like you said, curb cuts and articulating buses, I believe they're called, that sort of thing.


Pelka

Okay, were you at the CIL when there was the changeover from Larry [Biscamp] to Ed Roberts?



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Konkel

No.


Pelka

So you left before that happened, okay.


Konkel

Ed was rarely--I was rarely in the same room with Ed. He lived in Palo Alto, and I remember clearly--. Let's see, '76, '72, yes, it must have been when CIL was started Ed got that job as head of rehabilitation for the state of California, which is quite an accomplishment. I mean, that's a big job. So I don't think he lived in Berkeley much while I lived in Berkeley.


Pelka

I have some of the same questions about the CIL that I had about PDSP. Well, actually, let me back up one step. You talked about the kind of migration from PDSP to CIL. Was there ever a point where people thought that the one group was cutting in on the turf of the other group? Or was there any kind of competition for energy, for funds, for attention, anything like that?


Konkel

I don't recall that. It wouldn't surprise me if after I left, that became an issue. Maybe the PDSP felt like it was getting short shrift or something, I don't know. It doesn't ring bells for me.


Pelka

Were there big differences between the work--well, we talked a little bit about that--between the work environment at PDSP and CIL?


Konkel

Yes, just the increase in formality, if you will.


Pelka

Similar sort of question. If there were disagreements among the staff about a direction you were taking or a program you wanted to do, how were those disagreements resolved?


Konkel

I guess it would have been Larry [Biscamp] instead of John Hessler.


Pelka

But it was kind of a decision that would be more or less imposed, as opposed to "Let's get together and thrash out a consensus?"


Konkel

I think that it would have been, certainly would have been an interactive process. Again, Berkeley was so wide open at the time and people were--these people, by their very nature, were so intellectually active that you would have had discussion in the event of a disagreement. But ultimately, the director's the director. I think Larry or John Hessler, either one, would have the power to impose a solution. You wouldn't need to, sort of, form a consensus or a coalition. Ultimately, a decision would be made. You know, just like any job, the boss is the boss.


Pelka

Okay, were you there when the CIL board was established? Or was it established from the beginning?


Konkel

There must have been a board. Let's see, the articles of agreement--we were still at the other facility when the articles of agreement were, I think, written and signed. I remember signing something, I believe. But if it was incorporated, it must have had a board of directors right at the beginning. But I just, I just don't recall the details of it.



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Pelka

[laughs] Well, that was partly leading into my next question. Sometimes you have organizations where a board is very much in charge. The board of directors is kind of involved, probably not in the day-to-day operation, but month to month and quarter to quarter. Then there are other organizations where a board is kind of, like a formality. You have a board because you need a board to get the funding. Having a board kind of comes along with that. Where would CIL at that point have fallen in that spectrum?


Konkel

Again, I wasn't there that long, given the time CIL's been around. But I think the board--. People, the sort of inner core of people were running it, and I don't remember the board playing an important role while I was there. I wouldn't be surprised if it's totally different now.


Pelka

Okay, I have a similar question to one that I asked about when you were at PDSP. Was there an awareness or any interaction between folks at the CIL and any kind of a national movement at this point? Were folks aware, for example, of--. You talk about Judy Heumann coming in, she had been working in New York with DIA, Disabled In Action, a group like that. Was there discussion, awareness, of other stuff happening around the country?


Konkel

I think, on that, I was pretty much out. Judy Heumann came in pretty late in my time in that movement, so I never--I don't think I was involved at all in dealing with other parts of the country. I think it was just--maybe it was happening just as I was about to leave. Maybe that's when we started to interact more with other regions of the country.


Pelka

When did you leave, exactly?


Konkel

Well, I think it was--'70 to '72 is PDSP, maybe it was at the end of '73, late '73. So I think of it as almost four years in that movement starting in the fall of 1970.


Pelka

Now, for some reason, I've got you down as leaving in '74, but--.


Konkel

Maybe that's what I said. Maybe it was '74, I don't know. But if it was, it was probably early in '74.


Pelka

Okay, okay. Were you aware or have any involvement with organizing around the rehabilitation--the veto of the Rehabilitation Act? I didn't phrase that quite well.


Konkel

[sound in the background] Do you want me to get Brandon to turn that off? Is that picking up?


Pelka

I think it'll be okay.


Konkel

Okay.


Pelka

The Rehabilitation Act was being debated in Congress. It was passed in '72, Richard Nixon vetoed it and there was an effort around the country by disability activists to protest the veto. Were you involved with any of that? Were you aware of any of that?


Konkel

I don't recall. Yes, I remember it being discussed. I don't think I had any role in that. Yes, I remember it now. I guess, yes, I remember that. I do remember it. I should say, too, that


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my--I was putting a lot of time into studying and not that much time at any point into this, so I had to choose what I did very carefully. So, like this grant proposal and flying out here, and that's the sort of thing that I would have worked on. Then maybe interacting with people like Hessler and so forth, thinking through the other things. But, I wouldn't have had time to be an activist out there on something as big as the disability rights amendment, or whatever it's called.


Leaving CIL

Pelka

Okay, you actually got into your decisions for leaving the CIL. Is there anything else you wanted to say about that?


Konkel

No, I certainly had zero, nothing negative in my dealings with the CIL. I enjoyed my time there tremendously and was as enthusiastic the day I left as I was when I started, no antagonisms whatsoever.


Pelka

You weren't driven out by office politics?


Konkel

No, absolutely not.


Pelka

You had to kind of choose between--.


Konkel

It was one hundred percent Arnold Meltsner saying to me, "Choose one," and I didn't hesitate a beat. Because I knew that at some point in my life I would do that. That just seemed to be the right time.


Pelka

Do you have any--hang on just a second.



[Tape 4, Side A]
Pelka

You were talking about leaving the CIL. This is a decision you made based on having to focus on your studies and then your career. Do you have any last impressions or--. What were your final days like at the CIL? I mean, you knew at some point that you were going to be leaving. Do you recall anything of the last couple weeks?


Konkel

All I recall is, maybe some discussion of the vacuum, or what it meant for the organization to have me leave. Nobody was, I don't think, surprised or horrified or anything like that, because again, I was part-time; I wasn't a constant presence there. But I do recall some thought about it. Maybe, I remember--. I worked at the State Department. At one point I left, and went to another agency. I remember announcing to the staff that I was leaving, and I thought they'd all be shocked and break into tears. Instead, people stopped me in the hall and said, "What about that blotter you've got. You know, I could use that blotter!" Or my desk, or something like that. So maybe there's a little bit of that sense, you know, people kind of looking at my leaving as an opportunity or something, which I think is natural in any organization. There was certainly no ill will. I felt no ill will from the organization and had none toward it. It was just as simple as I've described it. In fact, I


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believe I used John Hessler as a reference when I first started looking for work out here in Washington. I think we stayed in touch for a while.


Pelka

Do you have any last impressions of PDSP or CIL? Just any general comment you want to make on either of them?


Konkel

I have the sense that CIL has gotten bigger since I left it. I hope that's the case, because I think of that as a time I cherish, even though I've obviously forgotten a large amount of it, just an important period of time in my life. I hope CIL is helping a lot of people live more independently and I wish all those people well, the ones that are still around. I have great admiration--even though I've thrown in a few catty remarks about a few of them, I admire all those people. People that--it's hard to imagine, you know, one minute you're a strapping teenage boy diving in to a swimming pool and as you hit the water you spend the rest of your life unable to move your legs and only able to move your hands very slightly. The only other thing, as I say, I realize I learned early in the game that quadriplegic didn't mean no use of your hands. But they have this culture, and it depends on precisely where the spinal injury is. So, they referred to people as a "C-3" or something, which is the spot in the spine where the break took place. It was almost like a shorthand for the person. Somebody like Hessler would pick up a mug of coffee and drink it, and that sort of thing. But in any case, I have great admiration for those people and really any disabled people who are out doing their best, achieving, succeeding.

I'll be frank; it's a challenge to have a disability. It's not something that's ruined my life or anything, but it has its challenges. I guess what struck me most was, as I think back to my time after I became disabled, that first year I was disabled it was almost kind of fun, in a way, because it was just purely the physical challenge. Learning Braille, mobility, I remember being proud the first time I went off by myself and I bought Hostess cupcakes at a liquor store that was like a block away from the Orientation Center. The next year, when I was at Berkeley and had to deal with the social acceptance and treatment by--not society as a whole--but different individuals in society, that was a, that was a negative year. I didn't enjoy that year. I now have learned how to deal with that, but I think that's the bigger challenge for anybody with a disability. Not the physical act of getting from Place A to Place B, but keeping your self-image intact as you deal with society. I think that's the bigger challenge, and that's what the--the CIL was trying to solve practical problems, but at the same time trying to help people deal with that larger challenge, at least back when I was in it. That was a very conscious goal of the organization.


Pelka

Do you have a sense as to the impact that CIL had on lives of people with disabilities across the country, on the disability rights movement in general, do you think about that? Do you have thoughts on that?


Konkel

I have hopes in that regard. I hope it had an impact on people back then. I know, for sure, it had an impact on we who were part of it, because I know that it played a role in all of us, in our identities, a positive role. Did it transform lives out there? I've never had anyone stop me on the street and say, "You changed my life, David." Nothing like that's ever happened. So I'm only hoping that that's the case.


Pelka

Well, there is this--. I mean, there was one CIL back in the early '70s, and there are now hundreds of them across the country, around the world, so do you have thoughts on that? On being part of something that sparked this development?



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Konkel

I'm proud. I'm proud that I was the guy that talked to Ron [Newman?], just to be, to be honest. If Chuck Cole is right that Ruth Grimes and I wrote that initial proposal--. I suppose I could feel badly that I just bailed on the whole thing, but I knew that I would have to do that, so I have no regrets. I mean, there are plenty of sharp people out there ready to help otherwise you wouldn't have all these CILs. But I'm proud that I was there at the beginning. I contributed to it intellectually, but I think more than anything, I walked in on something that was already--you know, the train was already drawing down the tracks and I managed to climb aboard.


Pelka

Have you kept in touch with a lot of those people, the people you knew back then? We've talked about talking to Chuck Cole.


Konkel

Yes, I guess only Chuck. Chuck, because he comes to Washington. Yes, there's the distance. I'm busy, I don't--I just really don't have the time to--. It's not just, like, I'm trying to shun the disabled. I ended up--my brother lives out in Seattle and he ran into a guy who used to be my best friend when I was in grammar school. This guy lives out in Oregon and wanted to get our friendship all hyped up again. You know, I talked to him a little bit. But I don't see a big--I don't have time. I've got enough things to do in a day to try to maintain a friendship with somebody three thousand miles--rekindle a friendship with somebody three thousand miles away. I guess I feel a little bit defensive about it, but I haven't kept in touch.


Career in economic analysis at the State Department

Pelka

You're with the State Department now.


Konkel

Yes.


Pelka

Can you talk a little bit, just quickly touch on what you've been doing since you left CIL, graduate school?


Konkel

My wife and I moved to Santiago, Chile, in '76 where I wrote my dissertation on the Chilean inflation. Then we came up here to Washington and I wanted to work at the State Department, and got a job at the State Department. With the exception of one year, when I cut over to the International Trade Commission, I've been at the State Department. I love it, people are bright and the subject matter is interesting, basically dealing with economics around the world. My job title, I'm Deputy Director of Economic Analysis at the State Department. So I have, maybe, twenty people that I supervise, or eighteen, something like that. We do economic analysis.

I remember during the Persian Gulf War I was writing a memo, maybe once a week, I guess, to Secretary Baker or one of his--you know they had the Baker Five. It was either to him or one of his deputies on how much damage we were doing to Iraq during the Persian Gulf War. In fact, I ended up talking to Baker about it. I'm not some bigshot that's the right-hand man of the Secretary of State, but I just happened to end up in a conversation with him on it. So that would be a typical subject, economic damage from bombing to a


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country like Lebanon that's screwing up its fiscal policy and ending up heading towards a financial blow-up. That's the sort of thing we follow.

I read--like, I have three computers on my desk at work because of different levels of classification and I do all my reading by computer. I have a scanner, but I hardly ever turn it on, because everything is electronic now. For my first, maybe, ten years at the department, I had readers. In fact, when I came there, the department wouldn't pay for readers. So my first year the California Rehab covered my reader, but then I got the State Department to cover that. But once I saw how useful computers were going to be, I just bailed out on readers because I--. Whenever you get a computer now, it has this speech capacity. I can go through text at maybe 450 words per minute, something like that, 500 words a minute. But if somebody's just reading something aloud, they typically plod along at 150 words a minute. So, I love using my computer.

Oh, one other thing I'll say about the State Department. I'm not involved in NFB or anything like that. But I do get involved somewhat with disability issues at the State Department. The first one I got involved in was whether blind people should be allowed in the Foreign Service. They had this awful situation where they'd let blind people take the written exam to get into the Foreign Service, and then go through their orals. Then after they got over both hurdles, which are highly competitive, then they'd have a medical exam. In the medical exam, they would be ineligible for the Foreign Service. They wouldn't tell the blind people. Not only were they keeping people out for questionable reasons, they were stringing them along because they didn't have the guts to say, "Look, we don't want blind people in the Foreign Service." So I got involved in that a lot. I basically, at different points, people would--I wasn't an activist, but I would just be asked about it by the department. I would say, "Absolutely, blind people should be allowed in the Foreign Service." But, no, I'm personally not interested in being in the Foreign Service. I lived in Chile and enjoyed it, but I thought this is a more challenging situation than I expected.

So I feel more effective--plus I love living in Georgetown here--but I feel more effective in this country. In fact, Don Galloway ended up popping back into my life. I didn't run into him, but he happened to be somebody who took on the State Department over getting into the foreign service. He was the Peace Corps guy in Jamaica and fought them. I think he never ended up in the foreign service. I can't quite remember why. But I think he's the one, really, that broke the door down more than anybody, if I understand the situation correctly.


Pelka

Any final thoughts on what all we've been talking about? Any way to sum it up, or anything we haven't talked about that you think we should? That's three questions there; I should focus on one. How about the last one? Anything we haven't talked about that you think we should?


Konkel

I don't recall, we've covered so much ground. I--and some of it--a lot of what I said probably wasn't worth saying. So I think if I have to scratch my head this long I've probably said all I have.


Pelka

Okay.


Konkel

As far as overall thoughts, I'd really be repeating myself. I'm proud of having been involved in the CIL, and I'm delighted it's expanded, and I hope it has helped people. I hope what we did back then helped people. But I think the essence of what we were doing


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wasn't helping people but developing the concept as a demonstration. That's why we--so much of what I did wasn't face to face with individuals but was more organizational, I guess you would say. But I think once the concept was developed, that I hope these other CILs that are multiplying are directly helping people face to face day in and day out.


Reactions to 9/11 attack

Pelka

What I want to do now is ask you some questions about your reaction to the events of September 11th, and tie that in specifically with the impact of those events on people with disabilities. Were you in Washington on September 11th?


Konkel

I was sitting in my office at Foggy Bottom, which is the headquarters for the State Department. My boss came in and sat on my sofa. He said, "Bill Miller"--who is a fellow who works for me--"Bill Miller was watching CNN [Cable News Network]." Two rooms away we have what we call a reading room, and there was a CNN, I mean cable TV. Normally it's on CNN. He said, "Bill Miller was watching CNN because an airplane hit one of the twin towers, and now a second airplane has hit the other twin tower." I said, "Terrorism," and he said, "You bet." So I got up, I grabbed my cane, and he and I walked into the room. Here again, I sound ridiculously boastful, but I'll just tell you what happened.

We're all watching this, and I said, just maybe ten minutes into this, or five minutes, I said, "Why are they going to stop in New York? Why not Washington, too?" People were basically just stunned. I think the grief for all of us came later. But we were all just in shock watching this. So nobody really said a lot, and then maybe five minutes later or so, I can't remember the exact timing, a CNN journalist said, "I don't want to scare people, but I'm at the Pentagon and I've just heard an explosion." I said aloud, "I'm out of here, folks." Well, Priscilla who also works there, said "If Konkel's out of here, I'm out of here."

So I walked into my office, and I switched off my computers. I didn't log off; I just hit the off button on my computers. I called my wife, we just live a mile from the State Department. I called my wife and asked her if she knew about it. She and her cousin had been on the phone about it. Anyways, I asked her to come and pick me up. I was frightened. I mean, it's just absurd, these people are so crazy. They think of the State Department as run by Jews, a lot of these Muslim fanatics. Now, clearly, U.S. policy leans towards Israel and I'm not surprising anybody with that observation. But if anything, the State Department in Washington is thought of as Arabist, rather than run by Jews. But these fanatics think of it as run by the Jews. So I knew that the State Department was on the target list of Al-Qaida.

So, anyway, I went out the nearest exit and I went out and stood by the curb. They had these Jersey Barriers that would keep terrorists out, and there was like a cut in it maybe two people wide, six feet wide, to get out past the Jersey Barriers. I was standing next to a woman, and I was literally shaking. I'm not exaggerating. I mean, it was kind of a trembling body and there's a woman next to me. She said--I mean I wasn't crying or anything, I was just, you know, afraid. The woman next to me said, "Look, if our number's


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called, it's called. What is there to worry about?" I said, "Well, I don't want it to be called. I've got a wife and a couple of kids, and frankly this is a little earlier than I'd planned on."

Anyway, my wife showed up shortly after that. There still wasn't--I mean, I'd got out early enough so there was no traffic at the time. She pulled up, and I got into the car, and I said, "Get away from the State Department." She said, "Gee, which way do I go." I said, "I don't know, just get away, get away from the department." Meanwhile, she told me that as she was facing--she was going down 21st Street, she was driving toward, say, C Street, the State Department--directly ahead of her was the plume of smoke rising from the Pentagon. So she was pretty darn nervous.

Meanwhile, on the radio, WTOP news radio, they had said that the Supreme Court had been attacked. This is the kind of stuff that's floating around, there are rumors flying around, that it had been attacked, and something about the Capital, no, the White House. Something about the White House that was kind of vague. So, we had no clue when this was going to stop. We didn't know if they had a hundred airplanes up or five hundred. I mean, we just had no clue. Once we got away from the State Department, I started feeling more relaxed. But we started to worry about my son who was up in his high school up north of us by a couple of miles. We decided that my wife would drive up and get him. I called the school and they said, "Well, you can leave him here but school is over. We're not doing any more teaching."

So, my wife decided she'd drive up and get him and that I would stay home. I can't quite remember why we did it that way. Maybe in case he came independently. I guess that was it. Well, the phone started ringing, relatives, my mother, friends and so forth. A friend of ours who works right by the White House called and she said that she and her colleagues couldn't get into the garage. The garage had been sealed so they couldn't get their cars to go home, so they wondered if they could walk across the city to stay with us. So she and her colleagues stayed with us the whole day. My wife ended up back there with my son. Of course, we're all glued to CNN like everybody in the country, in the world. But the city was gridlocked, and there was palpable fear in the city. I remember finally when they said the last airplane is down, that's the point where I really started to relax. But there was just palpable fear throughout this city. In retrospect, you can say, "It's horrible, these three planes plus the one in Pennsylvania." But, at the time, nobody had a clue if in addition, the next wave was going to be some kind of chemical bomb. There was just no clue.


Pelka

There was a report, wasn't there, that a car bomb exploded outside the State Department. Did you hear that report? Where were you when you heard that report?


Konkel

I was at home. It was on CNN, and I had been out of the building about an hour when that report came across CNN. That's why I'm glad I got out of there. I just thought I can't screw around, I'm supporting a family, I can't dick around. I'm glad I got out so early so my wife didn't get caught up in the gridlock. The city was in total gridlock the rest of the day, but--.


Pelka

Not to mention the fact that she wouldn't have had to worry about whether the report was true or not.


Konkel

Yes, yes. But the next day work resumed, they sent everybody home shortly after I left. The next day I talked to a fellow who was there at the time of that. He said he heard the explosion. His first thought was car bomb. Turns out there wasn't any car bomb, but he


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said he understand why the rumor was going around, because that's exactly what he thought happened. I don't know if there was sort of a construction noise, something falling in construction, or what the heck there was. But apparently there was some sort of a sound of an explosion even though, in fact, there wasn't ever a car bomb at the State Department. Okay, that's a lot of words about 9/11 but the other half you're asking is about disability.

I have always had this slight fear, I mean it's not a preoccupation by any means, but I realize that I am more vulnerable than a lot of people because I can't see. I'm cleared, I'm top-secret clearance. I can't think of any value that I would provide to any terrorist. I don't have anything that would interest them, particularly, but it has occurred to me that I have to be careful about my safety, just in the event of something happening. For instance, when I get into a cab, I've been doing this the whole time I'm in Washington, if I'm taking a cab I go down to the corner and stick my arm out. You know, cabs go up and down Wisconsin here, and so I'll get in a cab. What the cabs have is a piece of plastic. I don't want anybody to focus on this. But, they have like a plastic thing that hangs down the back of the passenger's seat. I don't know what's on there, but it talks about the fees per zone or whatever the heck it is. But it's something clearly that cabs are required to have in the district. As I get in, before I leave my feet, as I go in I always reach with my hand to make sure this plastic thing is on the back of the seat before I get in there. Just in the event that somebody's trying to kidnap me. I suppose that fear has been intensified since 9/11. Again, it's not something that I focus on much, but--.


Pelka

You talk about leaving the building and all. I know one of the concerns in New York City was people with disabilities in the World Trade Center having difficulties getting out. That's always been an issue that's been used by some to argue against access. Judy Heumann being an example in her employment discrimination suit, her wheelchair might be a fire hazard or whatever, blocking people from getting out, or how would she get out, how would people get out? How do you see that concern? Is that something that you think about? And if it is, how do you see that in the larger context?


Konkel

It has come up in my career in kind of a goofy way. I cover the same territory all the time at work, so certainly for me to get out the door is nothing. Whether there's a crowd or not a crowd, I'm not going to be a problem. My cane is not--I don't have to stick my cane out there and end up tripping people or--. You know, I know the place inside and out so, in the event of say, a fire, I would not be a problem and I would not have a problem. The only thing that came up once, several years ago, a director, an executive director kind of a guy, misread the regulations and thought that because I have a disability I need to have a designated person to escort me out of the building. So he said, "We have to designate someone to escort you out of the building. You wait here for that person in the event of a fire alarm. Wait till that person gets here and then the two of you go over to the C Street entrance elevators and take those designated elevators out." I finally wound up reading the regulations, just by accident. They were sent as we prepared for a fire drill. It says that's an option for a disabled person. Because what I said back then, I said, "You appoint anybody to do whatever the hell you want. If a fire alarm goes off, I'm going out this door and down those stairs, out of the building. I'm not sitting around waiting for somebody who might be on sick leave. I'm not going all the way across the building to some elevators by the C street entrance. I'm getting out of the damn building and--." I think that somebody in a wheelchair, it seems like a more complicated subject. But, for me, it's just not a relevant--I'd get out of the building, no problem. Conceivably something would happen where I'd need help, because I wouldn't be able to see what it is. You know, part of the building is


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blown up, or something like that, maybe there'd be a problem that I haven't anticipated, but anyway.


Pelka

Any other thoughts on this topic?


Konkel

Well, just to say the obvious. Certainly somebody getting out of the building in an emergency situation is not a reason that they shouldn't be employed. I mean, that's just--that kind of stuff really--that's the kind of stuff that CIL was out to prevent and that sort of stuff is just proving--there are problems to solve when somebody has a disability, but that's different from using a problem as an excuse to keep them from doing something.


Pelka

Okay. Anything else? Does that wrap it up?


Konkel

Can't think of a thing. [laughs]


Pelka

Well, thank you very much for agreeing to sit so long and answer so many questions. I very much appreciated it. I've had a great time doing this.


Konkel

I felt like a fool, some of the stuff I'm saying where I must sound so full of myself, but I hope I didn't get too absurd.


Pelka

No, not at all, thank you very much.


Konkel

It's been a pleasure.


[End Interview]

Sharon Bonney

Research Interviewer/Editor
Regional Oral History Office
Disability Rights and Independent Living Movement Oral History Series

Sharon Bonney received a B.S. in Communication and Journalism from the University of Illinois and an M.A. in Public Affairs from the University of Iowa. After working as a reporter and freelance writer, she Established the Services for handicapped Students Office at Iowa before working in the Department of Rehabilitation as a client advocate in Tennessee.

In 1979, Ms. Bonney became director of the Physically Disabled Students' Program at UC Berkeley for nine years. She later was the assistant director for the World Institute on Disability. Since 1996, she has been an interviewer/editor for the Regional Oral History Office at UC Berkeley for the Disability Rights and Independent Living Project.

Her professional activities include numerous publications on disability issues; founding member, president, treasurer, and conference chair of the Association on Handicapped Student Service Programs in Post Secondary Education (now known as AHEAD); participant in the White House Conference on Handicapped Individuals; and current member of the Society for Disability Studies.

Ms. Bonney has muscular dystrophy and is a wheelchair user.

Fred Pelka

Interviewer/Editor
Regional Oral History Office
Disability Rights and Independent Living Movement Oral History Series

Fred Pelka is a freelance writer specializing in disability rights politics and history. He is a 2004 recipient of a Guggenheim Fellowship to support research and writing of an Oral History of the Disability Rights Movement. His first book, The ABC-CLIO Companion to the Disability Rights Movement was published in 1997, and his book on the Invalid Corps during the Civil War is soon to be published. He has a bachelor's degree in English from the State University of New York at Buffalo and has done graduate work at Boston University (in journalism) and Emerson College (in fine arts).

Mr. Pelka is also the author of numerous articles on disability issues and was a frequent contributor to Mainstream: Magazine of the Able-Disabled and a contributing editor at On the Issues, a women's political quarterly based in New York City, from 1989 to 1995. In 1995, he researched and authored a major study on the problems of blind computer users for the National Council on Disability.

His disability rights activism began in 1983 at the Boston Center for Independent Living, where he served on the editorial board of Rollcall, the BCIL newsletter, from 1983 to 1994, and was elected to two terms on BCIL's board of trustees. He was also a long time member of the Massachusetts Coalition of Citizens with Disabilities (now defunct) and has been a researcher/writer for Justice for All, a disability rights listserve organized by Justin Dart, Fred Fay, and Becky Ogle, since 1997.

Mr. Pelka is an experienced interviewer, having conducted literally hundreds of interviews for use in his articles and book. He has taken the lead on interviews in Massachusetts and Washington DC for the Disability Rights and Independent Living Movement Project.

About this text
Courtesy of Regional Oral History Office. The Bancroft Library. University of California, Berkeley. Berkeley, Calif., 94720-6000; http://bancroft.berkeley.edu
http://content.cdlib.org/view?docId=hb5w1004cj&brand=calisphere
Title: Blind Services and Advocacy and the Independent Living Movement in Berkeley
By:  Bonney, Sharon, editor, Pelka, Fred, editor
Date: 2004 (issued)
Contributing Institution: Regional Oral History Office. The Bancroft Library. University of California, Berkeley. Berkeley, Calif., 94720-6000; http://bancroft.berkeley.edu
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