Disability Rights and Independent Living Movement Oral History Project

Judith Heumann

Pioneering Disability Rights Advocate and Leader in Disabled in Action, New York; Center for Independent Living, Berkeley; World Institute on Disability; and the US Department of Education, 1960s-2000

Interviews conducted by
Susan Brown, David Landes, and Jonathan Young,
in 1998-2001

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 Judith Heumann, dated January 2, 1998. 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:

Judith Heumann, Pioneering Disability Rights Advocate and Leader in Disabled in Action, New York: Center for Independent Living, Berkeley; World Institute on Disability; and the US Department of Education 1960s-2000, an oral history conducted by Susan Brown, David Landes, Jonathan Young in 1998-2001, Regional Oral History Office, The Bancroft Library, University of California, Berkeley, 2004.

Tape Guide

  • Interview 1: January 2, 1998
    • Tape 1, Side A 1
    • Tape 1, Side B 9
  • Interview 2: March 3, 1998
    • Tape 2, Side A 19
    • Tape 2, Side B 27
  • Interview 3: May 4, 1998
    • Tape 3, Side A 31
    • Tape 3, Side B 39
    • Tape 4, Side A 48
  • Interview 4: May 8, 1998
    • Tape 4, Side B 51
    • Tape 5, Side A 61
    • Tape 5, Side B 74
  • Interview 5: July 21, 1998
    • Tape 6, Side A 81
    • Tape 6, Side B 90
    • Tape 7, Side A 100
    • Tape 7, Side B not recorded
  • Interview 6: October 28, 1998
    • Tape 8-1, Side A 103
    • Tape 8-1, Side B 110
    • Tape 8-2, Side A 114
    • Tape 8-2, Side B not recorded
  • Interview 7: November 11, 1998
    • Tape 9, Side A 119
    • Tape 9, Side B 127
    • Tape 10, Side A 134
    • Tape 10, Side B not recorded
  • Interview 8: January 30, 1999
    • Tape 11, Side A 145
    • Tape 11, Side B 154
    • Tape 12, Side A 162
    • Tape 12, Side B 171
  • Interview 9: February 15, 1999
    • Tape 13, Side A 173
    • Tape 13, Side B 182
    • Tape 14, Side A 191
    • Tape 14, Side B 200
  • Interview 10: March 13, 1999
    • Tape 15, Side A 211
    • Tape 15, Side B 219
    • Tape 16, Side A 228
    • Tape 16, Side B 239
    • Tape 17, Side A 249
    • Tape 17, Side B 260
  • Interview 11: March 22, 1999
    • Tape 18, Side A 263
    • Tape 18, Side B 273
    • Tape 19, Side A 281
    • Tape 19, Side B not recorded
  • Interview 12: April 20, 1999
    • Tape 20, Side A 285
    • Tape 20, Side B 295
    • Tape 21, Side A 304
    • Tape 21, Side B 313
  • Interview 13: May 5, 1999
    • Tape 22, Side A 323
    • Tape 22, Side B 331
  • Interview 14: May 20, 1999
    • Tape 23, Side A 341
    • Tape 23, Side B 349
    • Tape 24, Side A 356
    • Tape 24, Side B not recorded
  • Interview 15: May 24, 1999
    • Tape 25, Side A 363
    • Tape 25, Side B 369
    • Tape 26, Side A 375
    • Tape 26, Side B not recorded
  • Interview 16: December 20, 1999
    • Tape 27, Side A 379
    • Tape 27, Side B 387
    • Tape 28, Side A 396
    • Tape 28, Side B 404
  • Interview 17: June 21, 2001
    • Tape 29, Side A 415
    • Tape 29, Side B 421
    • Tape 30, Side A 427
    • Tape 30, Side B 434
    • Tape 31, Side A 440
    • Tape 31, Side B 446
    • Tape 32, Side A 452
    • Tape 32, Side B 459

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

Interview History--Judith E. Heumann

Judy (Judith E.) Heumann has been a prominent figure in the history and evolution of the disability rights and independent living movement, nationally and worldwide, for more than thirty years. Her vision of equal rights and access for all people with disabilities was shaped in early childhood by her experiences of discrimination after the onset of polio. Throughout her elementary and high school education, before disability rights even existed as a concept, Ms. Heumann questioned the practice of segregation-based special education. In 1970, after being denied a teaching credential by the New York City's Board of Education, Ms. Heumann's successful fight for the right to teach in public school led to the grassroots mobilization of disability activism in New York and the founding of Disabled In Action [DIA].

Later in the decade, Ms. Heumann moved to Berkeley to become deputy director of the Center for Independent Living [CIL]. In 1983, she cofounded and codirected the World Institute on Disability [WID] with Ed [Edward V.] Roberts and Joan Leon. Ms. Heumann received an appointment to the post of assistant secretary of education for the Office of Special Education and Rehabilitative Services during the Clinton White House years. Since 2003, she's held the position of advisor on disability and development for the World Bank.

Due to geographical logistics, staffing changes, and scheduling challenges--not only because of the narrator's long work hours and frequent travel, but also her notoriety as a telephone fanatic (addressed in her transcript as a compensation for lack of mobility)--Ms. Heumann was interviewed for the Disability Rights and Independent Living Movement [DRILM] project by three interviewers: Jonathan Young and Susan Brown, who lived in the Washington, D.C., area, and David Landes, a resident of the Bay Area. Mr. Young, at the time a PhD candidate in American history and a scholar of the disability rights movement, was not personally acquainted with Ms. Heumann but did extensive research in preparation for the interview by conducting phone interviews with Ms. Heumann's mother and numerous long-time friends and colleagues. He completed five interview sessions with Ms. Heumann from January through May 1998 before he was appointed to the Clinton administration as associate director for disability outreach, White House Office of Public Liaison.

After a several-month interim, the interview sessions resumed with Ms. Brown, formally Ms. Heumann's personal service assistant in Berkeley and later an employee of WID working in the area of disability policy. Ms. Brown conducted ten interview sessions, from October 1998 through May 1999, and left the project when she was accepted as a Peace Corps volunteer. David Landes, a member of the DRILM project team completed this volume of Ms. Heumann's interview, conducting two interviews in 1999 and 2001. Mr. Landes' acquaintance with Ms. Heumann dates back to the mid-1970s when they both worked at CIL in Berkeley.

The first and second segments of the interview, conducted by Mr. Young and Ms. Brown, took place in the dining room of Ms. Heumann's three-bedroom apartment in the prestigious Kennedy-Warren building located next to the National Zoo in Washington D.C. Ms. Heumann has resided there since 1993 with her husband, Jorge Pineda, and two personal service assistants. The common rooms of the apartment, as well as the couple's bedroom, are decorated with a blend of artwork and family heirlooms from Jewish/ American and Mexican cultures, the result of couple's marriage of more than ten years, and a collection of mementos from countries Ms. Heumann has visited to promote her work for disability rights. Myriads of photographs of friends and family pepper walls, dressers, and desks throughout their living space.

The third segment of Ms. Heumann's oral history with Mr. Landes occurred during two of Ms. Heumann's visits to the Bay Area, which coincided with one of many work-related trips for the U.S. Department of

Education. One session was held at Ms. Heumann's hotel and the second at the Computer Technologies Program--a project which had originated at CIL during Ms. Heumann's tenure as deputy director.

Considered to be one of the most dynamic leaders and originators of the disability rights movement, Ms. Heumann's 400-page oral history includes her recollections of her personal development in relation to political and social awareness, which in turn birthed her own disability rights activism. Ms. Heumann also discusses her experiences with special education and rehabilitation services, first as a recipient from elementary school through graduate school, and later as the country's top administrator of those services. Other interview highlights include Ms. Heumann's accounts of working at CIL during its most groundbreaking period, her broadening awareness of disability issues brought on by foreign travel, and her numerous experiences of confronting discriminatory practices, from fighting the New York City Board of Education to leading protest demonstrations for access to public buildings, transportation, and civil rights.

Because of time constraints and logistical difficulties, Ms. Heumann's work after she left the Center for Independent Living is less fully discussed; in the future, we hope to add a second volume to Ms. Heumann's oral history to explore in greater detail her activities as cofounder and codirector of WID, as assistant secretary of education, and in her present position at the World Bank.

Ms. Heumann's transcript was lightly edited by Sharon Bonney of the DRILM project and reviewed by Denise Sherer Jacobson, also of the project. Because of Ms. Heumann's disinclination to read through the 400-page oral history, Ms. Sherer Jacobson--a longtime friend of Ms. Heumann's--noted parts of the transcript that needed clarification or further inquiry to jog the narrator's memory. (Throughout interview, Ms. Heumann often responded by telling the interviewer to call 'so-and-so,' if she couldn't remember details.) During a visit to Washington D.C., Ms. Sherer Jacobson spent four days with Ms. Heumann to complete the review of the transcript.

Denise Sherer Jacobson
Interviewer/Editor
March 16, 2004

Oakland, California


1

I. Family Background and Early Childhood

Family background


[Interview 1: January 2, 1998] [Tape 1, Side A]
A guide to the tapes can be found following the table of contents. Young

Judy, thanks for taking the time to sit down and begin our series of interviews. For this first interview, I'd like to go through some basic factual information, so I have a bit of an outline here. I'll let you take the lead.


Heumann

Okay. My full name is Judith Ellen Heumann, H-e-u-m-a-n-n. My date of birth is 12/18/47, and I was born in Philadelphia, Pennsylvania. My grandparents were all killed in concentration camps.


Young

Do you know when they were born, roughly?


Heumann

Actually, what you could do is call my uncle, Leon. I'll give you his number when we're finished. He could talk to you about his grandparents, and my mother can talk to you about her grandparents. I don't know when they were born. They're all from Germany, and we're all Jewish. My grandparents. I know they were butchers and let's see. I think my father's parents did their slaughtering, I think, behind the house, and then sold their meat from the house or from a store. I'm not really sure, actually.

My mother was an only child. My father--there were six children; two died before one year of age. There is my Uncle Leon, who's alive; Werner, my father, Alfred, Karl, and Leopold.


Young

That was your--


Heumann

Father's side of the family.


Young

Your father's mother had two kids that died.



2
Heumann

I think so. I think a boy and a girl. My uncle would love it if you interviewed him, actually. That would be great.

Let's see. My father I think was born December 7, 1919, and my mother September 29, 1922.


Young

How about your spouse?


Heumann

My mother and father were born in Germany. But, again, I don't know what town. I assume my father was born in Uffenheim, and I don't know where my mother was born. Jorge [Judy's husband] was born August 11, 1955, in Mexico City. My brother Joseph, September 27th, 1949; and my brother Rickie--hmm. He was born June 11th, 1954.


Young

I think she told me a year's difference, so I can put it together.


Heumann

Right. He's six years younger than me. Rickie is six years younger than me, and Joey is a year and a half. So Joey was definitely born in '49, and Rickie, I think--yes. He's forty-six now. He was born--you'll have to ask my mother. [chuckling] No one's ever asked me my brother's date, the year he was born.


Young

Where did you say you were born? In Philadelphia?


Heumann

Yes.


Young

Go ahead and review for me--


Heumann

Where I've lived?


Young

Speak about those places where you've lived.


Cities of residence

Heumann

Well, my parents moved to Brooklyn [New York] when I was about three months old. We lived in the same house my entire life in Brooklyn. Well, I don't know if that's exactly right. My parents lived at 657 East 38th Street until my dad died.


Young

What year was that?


Heumann

My dad died in March, 1991, but my mother didn't move right away. She didn't move for a couple of years. She moved, I think, in 1993 or 1994, then she moved to Ocean Parkway.


Young

Your parents lived in that house for--


Heumann

Forty-five years or something, yes. Now, when I went to college I lived in the dorms. I went to Long Island University in Brooklyn, so I lived in the dorms for the four years that I went to school.



3
Young

When did you start school? I know you graduated in--


Heumann

1969. I started in 1965. Then in 1969 I moved across the street from the dorms to 190 Willoughby Street, and I lived there until I went to Berkeley, which I think was in, like, August of 1993.


Young

1973.


Heumann

I'm sorry, 1973, exactly. Then I lived on Haste Street in Berkeley until 1974.


Young

But that wasn't all you were doing--


Heumann

I'm sorry. I was getting my master's degree at Berkeley.


Young

In public health?


Heumann

Yes.


Young

That was a one- or a two-year degree?


Heumann

It was a two-year degree, but I did it differently. We can talk about that later, but it was a two-year degree. I was supposed to do a six-month residency and then come back to school, but I didn't do a six-month residency. I did a longer residency, and they let me because I had had sufficient number of credits. What was going on at Berkeley, at that time, was if you didn't have a science background, they wanted you to take two years, and I had to do a six-month placement.


Young

Two years. Was that all course work? Or a year and a half of course work and then a six-month residency?


Heumann

Exactly. But they waived the additional six-month course work because I was back here in Washington, working for the Senate.


Young

The Senate was your residency?


Heumann

Right. I had enough credits for the one-year degree, and so they basically said that if I could pass the comprehensives, I could do a residency for a year, which is what I did.


Young

You were only there for one academic year.


Heumann

I was there for one academic year.


Young

And then came back here--


Heumann

Then I came back to Washington for my residency.


Young

For one year.


Heumann

A year and a half, actually.



4
Young

And then went back to Berkeley.


Heumann

And then I went back to Berkeley, right.


Young

So you would have gone back to Berkeley at the end of 1975?


Heumann

I went back to Berkeley, December 1975. I guess Lisa Walker is somebody that maybe you should talk to.


Young

Who was she?


Heumann

She was the person I worked with when I was working in the Senate.


Early life in Brooklyn

Young

Tell me a little bit about your home in Brooklyn.


Heumann

Like about the house or the neighborhood?


Young

Yes. What was the town like?


Heumann

The town [laughing].


Young

Neighborhood.


Heumann

Brooklyn a town, hmm. Four million people in this town [chuckling]. We moved into the neighborhood, and I think a lot of the families were moving in around that time, after the war. The block that we lived on was mainly private homes, detached and semi-detached. It was a primarily Christian neighborhood. We were very close with a lot of the families on the block, and I'm still friends with a number of the people I grew up with. It was a pretty, you know, working-class, lower middle-income neighborhood. It was a close neighborhood. We called some of the neighbors aunts and uncles.

Women were mainly housewives. The women were all housewives. Really none of the women worked outside their homes; they all did their work in their homes. There was a guy who was a poet and a man who was a police officer and a person who was a high school teacher and a firefighter, and my father was a butcher.

It was a very friendly neighborhood. We used to do a lot of things together.


Young

Games?


Heumann

Yes, kids played together a lot and were in each other's homes a lot.


Young

I haven't been to Brooklyn.


Heumann

I could tell when you called it a town [chuckling].



5
Young

That was a mistake. I didn't know that Brooklyn was a city. Did you stay there for the most part, or did you travel to other parts of New York a lot as a child? Were your surroundings primarily that neighborhood is what I'm asking?


Heumann

Well, I mean, we went to the theater in Manhattan. We would go to the ballet, and we would go to the opera, and we'd go to light opera and things like that. But mainly speaking, when you're a kid, except when you visit friends and family and do things like that, you're mainly in your neighborhood. So I spent a lot of my time in Brooklyn because most of my relatives lived in Brooklyn. Some of them lived in Queens, and some lived in Manhattan. I'd go to Long Island. But I didn't frequently travel outside of the New York surrounding area, like Philadelphia, New Jersey, New York and upstate New York. I didn't travel on an airplane until I was in college.


Young

Why did your parents move to Brooklyn?


Heumann

Because my father's family was mainly in Brooklyn, and my dad was going to open up a--I'm not sure he moved because he was opening up a store or wanted to open up a store. I don't know. I think that was basically--his brother lived in Philadelphia, but his brother died in 1947, before I was born, so I'm not exactly sure whether his brother dying had anything to do with him coming to Brooklyn. But my mother and uncle would be able to tell you that.


Young

I did get this from your mother, but we'll make sure we have it right by doing it a second time. Tell me the different schools you attended prior to college.


Heumann

It was home instruction and P.S. [Public School] 219, then Sheepshead Bay High School.


Young

What was the high school name again?


Heumann

Sheepshead Bay.


Young

What did you study in college?


Heumann

Speech and theater, with an emphasis in pathology. Two degrees: a BA and a master's in public health, MPH.


Assistant Secretary at Rehabilitation Services Administration

Young

Tell me about your current job.


Heumann

My current job. I'm an assistant secretary who has responsibility over the Office of Special Education and Rehabilitative Services. I have a staff of about 370, a budget of a little more than $7 billion, and I have responsibility over special education, rehabilitation, and the National Institute on Disability and Rehabilitation Research [NIDRR]. All three components have a political appointee over them who reports to me.


Young

Kate Seelman is with NIDRR. Who are the other two?



6
Heumann

Fred Schroeder, who is the commissioner of the Rehabilitation Services Administration, and Tom Hehir, H-e-h-i-r, who is the director of the Office of Special Education programs. I have responsibility over those programs: working on budgets and legislation, development of legislation, working with Congress, the development of regulations; once legislation is passed, implementation and appropriations issues; and then working within the department on the overall education agenda of the department and helping to assure that disability is integrated throughout the department's agenda.


Young

Is that something that you wanted to do for a long time, to be in a big government position, or is that somewhat serendipitous?


Heumann

Probably a little of both. I had worked for a short period of time with Ed Roberts in Sacramento in the state Department of Rehabilitation and had decided at that time that if I ever would work for government, it would have to be a position which had a broad reach of responsibility. So after the campaign, when the President [Clinton] was elected, I was asked if there were any positions I would be interested in, that was the one that seemed a more natural position because it was over, you know, major areas.


Working with political appointees

Young

What are your daily responsibilities like? If you have three political appointees for each of the three divisions, how do you spend your days?


Heumann

I try to be as knowledgeable as possible about the work going on in all three components. My work really varies, depending on what's going on. So when we were working on the development of the IDEA [Individuals with Disabilities Education Act] statute, I spent large amounts of time working with the director and his staff on policy issues around the legislation. And it depended. Sometimes I would meet with staff who had done work and were reporting in on what their recommendations were. Sometimes I would meet with them to help design what I wanted them to be thinking about.

With the IDEA reauthorization, I spent a lot of time, a lot of time on policy issues, a lot of time working with the House and Senate staff people, a lot of time working with constituency groups. I guess more time on the development of the IDEA reauthorization because it was such a huge task. Now I've been spending a lot of time on regulations. Again, there's a core group of staff that do the bulk of the work and work with me on policy issues, when there are disagreements, or when decisions have to be made about what direction to go in.

I work on budget issues, I work on setting priorities for discretionary grant programs. Basically this job is kind of a unique job because there are three political appointees. If I were to do it, I'm not exactly sure how I think about this, as to whether or not it's the best thing to have three political appointees or not.


Young

There's a lot of changeover every administration?



7
Heumann

Yes. I mean, they're deputies, and the deputies don't change, but the nature of government is such that when you're the director of a program and you're a political appointee, your goal is not necessarily to work on a team. You know, most people come to D.C. to advance themselves; some people come to D.C. to advance an agenda; some people come to D.C. to do both. But this job, I think, is mired in the fact that I came to this job with the goal of having people work together, all three of the components working together. Historically, that never had happened.


Young

So having four political appointees makes things work somewhat at odds.


Heumann

There's actually more than that because I have a political deputy, and then we have one, two, three, four, five lower-level political appointees. But I just think that if the place had run in a more collaborative way before I came there, it wouldn't have been as difficult as it can be sometimes because that environment would already exist, but that environment hasn't existed, so it's creating it. I think, you know, it's got its bumps. But it moves slowly forward. The question will be when I leave, how things continue to move forward.


Young

I understand you like to sleep in in the mornings and show up to work around ten, eleven o'clock?


Heumann

Yeah, right [laughter]. I get up about--well, it depends. I get up at a quarter to six. Sometimes I get up earlier. Sometimes I start working in bed around four; it depends. I get home somewhere between seven and eight or later.


Young

You're in the office for a good twelve hours.


Heumann

I get to the office about eight-thirty and so I leave the office--depending on the time of year, I leave the office different times, and depending on what's going on. But I really never leave before six-thirty or seven. So I'm usually in the office, you know, ten to eleven hours a day. But then I started working before, and I'd come home and sometimes I have a meeting; sometimes I have dinner with my husband, and then I do more work. So I usually go to bed between eleven and twelve. I'm on the phone a lot [chuckling].


Young

People tell me about your one, two, three, four o'clock in the morning phone calls.


Heumann

[chuckling] Well, see, now it's different. When I lived in California, what I used to do more was to get up in the morning and then be able to call back East, so now it's a little bit more difficult with the time change. So it's more likely that I'm making the calls at twelve or one in the morning to them back in the West Coast. Yes, I'm up a lot.


Social interests

Young

I get the impression from a number of sources that your work and your vision and your commitment to people with disabilities are a huge part of your life. Time, emotional commitment, energy. Tell me about some of the things that interest you besides your work in the government and your business calls. What else do you like to do?



8
Heumann

I wouldn't define my work as work in the government because this is only a temporary job, so I've always worked like this. What else do I do? Well, I try to go to the movies. I like to go to the theater. I like ballet, but I haven't been in years. I like the opera, but I haven't been in years. I like to go to museums. Things happen in spurts. My brother was here this summer, so I did a bunch of museums. I guess since December we've gone to the MCI [D.C. cultural place, MCI Center, which is a center for basketball, concerts, etc.]. Did it twice. I like ice skating. There are few things that I will drop my work for, but if ice skating is on, I'll try and watch ice skating on TV.

I like spending time with my friends, talking to my family. I like spending time with some of the older relatives and trying to find out about the history of the family, my family.


Young

Has anybody tried to do a genealogy?


Heumann

I don't think so, really.


Young

Do you still sing?


Heumann

Yes, but I don't study any more. I haven't studied since I was twenty-five, so I don't do anything professionally or amateur. I just kind of sing at the synagogue and in the house. I think about it, but I don't have the time right now.


Young

Neil [Jacobson] tells me the synagogue has been an important part of your life.


Heumann

Yes. You know, more so in California than here. Here in D.C. the synagogue in the neighborhood is a very big place, and I really don't know a lot of the people, and it's not what I'm used to. I'm used to smaller synagogues. But the synagogue in California, [Congregation] Netivat Shalom--whenever I go back on business, I always go to shul. I'm a member out there. Yes, my religion is a big part of my life.


Young

We'll come back to that. We're going to take you back in time again momentarily. Anything else you'd like to add about what you do currently?


Heumann

I assume we'll talk about more of this later, right?


Young

Yes, we'll do that.


Heumann

I think a big part of what I do now, actually, is try to work on getting a bigger agenda, not just in the area of education but working with people in other agencies to look at the entire picture of what disabled people need and what we get and what we're not getting, and trying to help advance a broader agenda. It's happening somewhat. I think there's a real advantage of understanding government. When you're working in a job like I am, you have only so much time to do other things because I spend so much time, you know, in this job specifically.

It's really been, I think, one of the dilemmas for me of when do I delegate, when don't I delegate. I think part of it probably, really, is a trust factor. When you come to this kind of a job, everybody that I brought in were people that I'd never worked with before. So while this administration was really very good, in our department at least, in letting the assistant secretaries interview and make our recommendations to the secretary, all of which he


9
honored, I still, nonetheless, didn't know them. I knew Fred a little bit, but a little teeny bit from California, I had met Kate a couple of times, and I had met Howard Moses, who's my deputy. Howard is somebody you might want to talk to, actually.

But I hadn't worked with them before, and so, you know, you come into these jobs not knowing how the jobs run and everybody is coming in together, not knowing what you're doing. You start running; you don't start slowly [chuckling]. You get dropped down, and it's full speed ahead.

I don't remember what your question was.


Young

I want to stop the tape.


Early childhood and family relationships


[Tape 1, Side B]
Young

Judy, how would you describe yourself as a little girl? What were you like as a child?


Heumann

I never really thought about that. Probably inquisitive. I think I liked to play. I liked my friends. I liked to play dolls. I loved dolls.


Young

What kind of dolls?


Heumann

Ginny dolls. I think we had ballet dolls.


Young

No Barbies?


Heumann

No, Barbie wasn't out yet. Ginny dolls were in then. We used to do that a lot. I liked the phone pretty early on because it was a way for me to talk to people when I couldn't get to their places. I was a happy kid.

[added by Ms. Heumann during the editorial process: I would sit on the steps of my house, or a friend's house, and we would play with the dolls using a different voice and doing children's make-believe talk. I loved to put the shoes on my fingers--the third and fourth fingers--and walk with them. I learned to dance this way. I still walk and dance with my fingers--always my left hand. Arlene Mayerson's daughter Emma and Diane Lipton's daughter Daria recently gave me shoes for my fingers so I could dance.]


Young

How did you and your brothers get along?


Heumann

I think like brothers and sisters get along. We got along basically well. We had our fights. When my parents bought the house, I didn't have my disability, so they bought a house that had two floors. So when I had polio they then built an extension onto the first floor. My brothers slept upstairs, but I slept downstairs. I didn't start sleeping downstairs until I was about eight or nine years old. I think before that my father would carry me up and my mother would carry me down, but as I was getting bigger it was too much for my mom to


10
carry me down, so that's when I moved downstairs. So I think from that perspective our relationship was somewhat different because if I didn't have a disability, my brothers would have shared a room upstairs and I would have been upstairs. So we didn't have that level of interaction.

I had a lot of friends. I used to go to my friends' houses a lot. I participated in everything that we did in the neighborhood. I was in Brownies. I went to Hebrew school. Took piano lessons. Later I was in Girl Scouts. I liked dancing; always liked dancing. I used to be in plays, at the synagogue first and then in elementary school, only with disabled children, then when I went to camp. Camp was a very big part of my life. I guess I started going when I was about nine. First, I went to a place called Camp Oakhurst.


Young

How do you spell that?


Heumann

O-a-k-h-u-r-s-t, in New Jersey. Then I went to a camp called Camp Jened, J-e-n-e-d, in Hunter, New York.


Young

I want to come back to those. Tell me about your parents.


Father and mother

Heumann

My parents were loving parents. They were very driven. Driven. They worked very hard. My father and my uncle opened the store, L&W Heumann Meats, Inc., in the fifties, and they worked six days a week. My dad used to leave the house at, like, three-thirty in the morning and got home at probably seven-thirty, eight, eight-thirty at night. My mom worked half-time for my father, and my aunt worked half-time.


Young

Do you remember seeing your father much?


Heumann

Oh, sure. When he came home every day. I saw him every day. That may be one of the reasons why I started getting up early in the morning because--


Young

Stayed up late and got up early.


Heumann

That's right. He was up late. He read a lot. He wouldn't sleep through the night. We always laughed at my dad because he would fall asleep [chuckling] obviously because he didn't get a lot of it, so he'd fall asleep at the table after he had eaten or he'd fall asleep reading. He read a lot when he was home, and he and my mom were family people inasmuch as--we did a lot with his relatives and my mother's relatives. Well, my mother didn't have as many of them as my father. There was, like, a family circle, so we used to get together with people, like, once a month. But we used to see my relatives, like, on Sundays. Visit my uncle Alfred or my uncle Leon or my cousins on 7th Street or different places.

My father was into theater, museums. I think it's amazing all the things we did, given the number of hours my father worked, because on Sunday we would get up and I would go to Hebrew school; my brothers would go to Hebrew school; and then when we came back


11
we would frequently go to the theater, go to a museum, go do something. We ate together on Sunday; tried to eat together Friday night or Saturday night.


Young

Your dad didn't eat with you, then, during the week.


Heumann

No, because we'd eat earlier--by the time he came home--but my mother would eat with him. My mother took care of everything else, you know? She took care of us, and she chauffeured us around during the day. She made sure we were doing our homework. My father was very involved in that stuff, too. My father didn't graduate high school, and my mother went to a little bit of college. But school was something that was very important for all of us. We had to go to school.


Young

Why didn't your mom finish college?


Heumann

I assume because she met my dad. Got married. She never went to school full-time. I mean, they were both trying to raise money to try to get their parents out of Germany. Well, my dad went into the war, and my mom worked for the War Department, I guess. I'm not sure if she was in school--I don't know when she was taking some college classes--and I don't know how much college she did, but she wasn't a full-time student.


Young

When did your dad go into the war?


Heumann

Pretty early. You have to ask my mother the dates.


Young

Okay. What did they tell you about your grandparents?


Knowledge of grandparents and anti-Semitism

Heumann

That was kind of interesting because of the way my grandparents died. You learned things kind of along the way, but because we didn't know them--my mom didn't know my dad's parents; my dad didn't know my mom's parents--there were no shared experiences. So I don't really recall a lot of--there were pictures around. We knew they had been killed, and my parents would talk about them from time to time.

We didn't buy anything German-made. We didn't buy anything Japanese-made. My father and my uncle, in particular, had very, well, my mother too, of course, strong feelings. They didn't teach us German. They didn't want us to learn German. It was very apparent. They would talk German amongst themselves if they didn't want us to understand something. They didn't talk a lot. We would have to raise the discussion, ask things.


Young

Did you know how they died in the beginning?


Heumann

Yes.


Young

When would you have found that out? How old would you have been?



12
Heumann

As early as I would have remembered it. There was nothing that was ever held back about that.


Young

How did that strike you? I would think that would be devastating.


Heumann

But, you know, you have to really realize this in the context of being Jewish and just the whole issue of anti-Semitism historically. I mean, I think it was something that, as I got older, I thought more about because they were never there, so it wasn't like I had them and then I lost them.


Young

No real sense of loss in the sense of missing something--.


Heumann

Well, there's a sense of loss inasmuch as if friends of mine had grandparents, and usually people didn't have four grandparents, you know, so if people would talk about their grandparents, then it would feel, then I would realize differently, you know, that I didn't have them and I never had them. It's the kind of subject where, you know, you have to be of a certain age and intellect, I think, to be able to start really comprehending what all of this really meant. We studied about it. It was certainly nothing that was ever hidden in my family about it. And remembered stories which still today I don't know all the answers to.


Thoughts on being Jewish

Young

You mentioned a moment ago that you had to view it in the context of anti-Semitism. What types of racism did you sense as a child?


Heumann

Racism?


Young

Right. A lot of hostility toward you and your family? You said it was a predominantly Christian neighborhood.


Heumann

No. No, I really didn't at all. We were different. You know, Christmas time we didn't have a Christmas tree and we didn't have a wreath and we didn't do any of that, but we went into our neighbors' houses, and we got Christmas presents from them. The biggest difference was how, as Christians, they were raised to believe that you had to be baptized and if you weren't baptized you couldn't go to heaven. I remember worrying about that. On Sunday nights, when I listened to the radio while I was going to sleep, there were no music programs at the time because all they had was religious programming. So they had these heavy Christian programs about Christ. At that time, there was, I didn't feel this from my neighbors, but you knew it was going on, this belief that Christ had been killed by the Jews. Christ wasn't anything to us. I mean, I learned about this figure, Christ.

My parents were very respectful of other people's religions, which I think was also very important. I found that the people that we lived with were very respectful of us. I don't ever remember anybody pushing us, pushing me to be anything but myself. We didn't dwell on it a lot. A bunch of my friends went to Catholic schools. But my mother was very active in the neighborhood always. My brothers were in Little League. I think it was


13
sponsored by the Catholic Church, so they were friends with the priests, and it just kind of was.


Young

How are you a different person because of your grandparents' having been killed in the Holocaust?


Heumann

I think it's broader than that. I don't know if I'm a different person, but how am I as a person whose family grew up in Germany and then left or didn't leave because of that? I mean, I hope it's made me more sensitive to discrimination. Over the course of the years I've been to Germany a number of times. What strikes me about what happened there is very much how there was so much denial and still is so much denial about what actually happened. I think that, to me, is something that on some level I think about a lot, which is how can you be in a situation where you can deny things that are going on to such strong degrees?

Which in a very real way happens here in the United States. Well, the magnitude of the problem is clearly different because, you know, in Germany you had concentration camps a few miles away from major urban areas, with people denying that they knew anything was going on, although people were disappearing from their neighborhoods, never to be seen again. This belching smoke was coming out in the stories. So that incongruity, if there's such a word--.

But here I think it's also whether or not you want to pay attention to what's going on in communities that middle-class and above people don't live in and can avoid and can just deny the existence of poverty in the United States.


Young

So that's a really powerful metaphor of the whole idea of being aware.


Different responsibilities as a Jewish person

Heumann

I think for me, being Jewish, has always meant that I have a different responsibility.


Young

A different responsibility to yourself or other people?


Heumann

Other people.


Young

And what is that responsibility?


Heumann

I just think it's needing to take responsibility for more than myself and needing to take responsibility for what does go on in my environment and not just cavalierly saying it's somebody else's responsibility other than my own.


Young

Why wouldn't it be the opposite? If you have ancestors who were brutally murdered, why not have a sense of "I'm just going to look out for me because other people weren't looking out for my family, so I'm going to make sure that I look out for me"?



14
Heumann

Well, because I've never felt that looking after oneself--I mean, I'm always looking out for myself. I think you just always do look after yourself. But I've never felt that just looking out for yourself can fix a problem. If it's a large problem, it's not one that affects just one person, and so I've always felt that it's better to work with more people rather than with fewer people.


Young

Anything else you'd like to add about your grandparents?


Heumann

We can talk about it another time. I'll think about it.


Young

Okay.


More on mother

Heumann

About my mother. I think my mother, when we were growing up, she had a lot of responsibility because she was raising three kids, and there was so much problem with my getting into school. She really had to start doing work to get me in school. They were never prepared for any of this. I think for both my parents, on a certain level, it was probably, you know, a rude awakening to what they probably thought would happen here. You know, it's, like, my mom takes me to school and I don't get to go to school, and I don't get to go to school because I'm in a wheelchair. So that wasn't in their plan.


Young

You mean they had thoughts that America was a better place than that?


Heumann

I don't know if they would ever say America wasn't a good place or a better place. I don't think they'd use those words. But I think probably that they were surprised. Did you talk to my mother at all about this?


Young

[no audible reply, but obviously affirmative]


Heumann

What did she say? I never talked to her about it, really.


Young

What did she say about the problems of you getting into school?


Heumann

Yes. Did she talk at all about what--


Young

I want to keep my voice at a minimum on the tape, but I think for her she never thought differently of you for having a disability in the sense that that didn't entitle you to anything less than anybody else.


Heumann

Right.


Young

So she talks about not having reflected on a lot of things relating to that process because she sounded very pragmatic. What good is reflection going to do? You've just got to do it.


Heumann

[chuckling] That's my mother.



15
Young

She didn't spend a lot of time thinking about what led up to this, why is this the case? It was more the fact of, I want my daughter to have a good education, and I'm going to do darn well whatever I can--


Heumann

Now.


Young

--to make sure she does.


Heumann

Now. Exactly.


Young

That's the sense that I got from her.


Heumann

Yes. I think, you know, that's exactly the way my mother was, and is. It's don't look back; always look forward. What's the problem, and what do we have to do to deal with it? So I think it's very funny when you think about all the things that she did, given her background, and how she [chuckling] certainly--she didn't come from a political family in Germany or the family that she lived with here in the States. I think they were just kind of--you know, they lived in their community. They did what they did in their community.


Young

It sounds like she has incredible perseverance.


Heumann

Right, she does. She learned as she went. I think what I learned from my mother and my father around this individual approach, my mother never just approached things for me. I mean, she did in the beginning because her first experience was me not getting to school, so the first thing she had to do was get me into a school. But once I started going to P.S. 219, she started working with other parents. When they found out that if kids were in wheelchairs they were going back onto home instruction, she worked with other parents to work with the Board of Education.

I mean, I very much believe there's strength in numbers, and I think my mother believes very much there's strength in numbers. There's also something about protection [chuckling] in numbers when you're not out there by yourself. It's a reassuring factor, I think, to have other people who share similar goals, to reassure you that what you're trying to do is a good thing to do, or at least the right thing to do, not necessarily the good thing, but the right thing.


Effects of polio on Ms. Heumann's life

Young

Judy, you obviously, having polio at the age of eighteen months, have never known not having a disability. How did that make a difference in your life in the earliest years, having a disability?


Heumann

I can't say how it made a difference because I didn't have one and then the other. For me, it just was a part of who I was. Obviously, I knew that I was different from the other kids. I didn't do things the way other kids did them. As I got older, that was a bigger issue in my life than when I was younger. Because when I was younger, I think I did know that I was doing things differently. By and large, I did them anyway. Or my family helped me


16
do them, or my friends or their parents helped me do things. I don't remember thinking a lot that I was prevented from doing things that other kids did.

I mean, even in the neighborhood, when kids went roller skating, sometimes I would just watch them roller skate, but other times I put skates on and moved forward in my wheelchair, and my friends would push my chair, so I would play skating.

I didn't have an electric wheelchair, and I think that would have been a helpful thing. They didn't exist when I was younger, but then, when I was older, my father said when I could afford to buy one, I could buy one. But he didn't think they were necessarily good.


Financial support

Young

Tell me a little bit about the disability in terms of functional impact. I know you use a wheelchair now. Had that condition been pretty consistent over time? Was it more severe when you were first having polio?


Heumann

No. Well, yes and no, but I don't remember because I was so young. I was in an iron lung for a couple of months, and then, I think, my mom took me for treatment on a regular basis. I think I was in and out of the hospital for about a year. What did she say? How long was I in and out of the hospital? Do you remember?


Young

I don't remember.


Heumann

Yes. I think I was in and out of the hospital for about a year, and then I went for treatments, and then we had a therapist who came to the house, and then I went to Rusk Institute for three months. So, you know, I did things differently than my brother. I don't know, but my brother was born just at the time that I had polio, so I think there were issues there because my mother would be at the hospital a lot, and so he would be taken care of by other neighbors. The neighbors were very good because they helped my mom a lot.

I remember once in Brownies--or Girl Scouts; I can't remember--they went to an ice skating rink and they said my wheelchair couldn't go in the ice skating rink. That was the only time I ever remember not participating in an activity. [ringing telephone]


Young

Were you ever able to walk?


Heumann

I used to use crutches and braces, and I stood a lot, and I walked, but I never walked very well. I would walk in my house. I didn't use the wheelchair a lot in the house, although I did for my homework. But the doctors were always saying I needed to stand as much as possible. I stood in the car; I stood at the house. I used to walk, as I said, in the house, and then sometimes I would walk outside, but never very far, and I walked very slowly. So once I had my spinal fusion in 1968, I didn't use braces again after that.


Young

What was the purpose of the spinal fusion?



17
Heumann

To straighten my back so it would stop curving.


Young

And you weren't able to walk after that?


Heumann

No. I mean, my walking was with crutches and braces, and what happened after I had my spinal fusion was I had to get a new pair of braces. They went to order me a set of braces that weren't the right kind, and I told them that I didn't think they were ordering me the right kind of braces. They insisted that they were. So when I got them, they weren't, so I just never got another pair.


Young

Shall we stop for now?


Heumann

Sure.



18

19

II. More on Onset of Polio and Early Experiences

Onset of polio and early recovery


[Interview 2: March 3, 1998] [Tape 2, Side A]
Heumann

--because I was less than five years old. So a child at that age doesn't really have an analysis of what was going on.


Young

So did you only undergo any type of physical therapy or rehabilitation when you were five and younger, or go on at all later in life?


Heumann

I had therapy at home, I guess, for a few years when I was younger, and I had physical therapy when I was in school until I was eight years old--until I graduated from the eighth grade. But therapy was never an overpowering part of my life.


Young

So was it just sort of strengthening exercises, that type of therapy?


Heumann

Yes. I mean, you know, keeping my tendons not tight. I was different than a lot of other people. My parents weren't into surgery. I also wasn't in the hospital a lot. I mean, I was when I first had polio. When I first had polio, I was probably in the hospital--I'm not sure--maybe up to a year. I don't really know the answer to that. Like, most of the time. Then, when I came out, I think they took me for Sister Kenny treatments.


Young

What do you mean by Sister Kenny treatments?


Heumann

Sister Kenny was a program for polio, and they had a certain type of medical treatment or therapy treatment, but I don't really know what it was. I was just, like, three.


Young

Okay.


Heumann

So I don't remember it. When I was four, I think is when I went to the Rusk Institute, and that was for three months. My parents would pick me up on Fridays and bring me back on Monday morning. What I remember about that was I didn't like going, and my parents visited me on Wednesday afternoons. They [the Rusk Institute] wanted you to come back


20
on Sunday nights, and my parents didn't feel that there was a reason for me to come back on Sunday night because they didn't do anything on Sunday night. So I kind of have this vague recollection of them saying that I should be coming back earlier and my parents not, but I don't really know how involved that was. But I remember those kinds of discussions.

We stopped going to Rusk Institute, even on an outpatient basis, when I was a little more than five years old, I think. One of the doctors had given some kind of a prognosis about what I would and wouldn't be able to do. My parents just thought they had no ability to make these kinds of prognoses at this age, so we stopped going there. I became a private patient of one of the doctors that we met at the rehab hospital.

We had an Israeli guy who came over to the house and did therapy once a week, and I want to say, like, I don't know--I really don't know for how long--but I think I was four or five when that started. My father used to do some therapy with me, stretching and things like that. Then when I was six I had tendon releases. I had surgery. I was in the hospital for about two weeks. What I remember most about it was that I was in the hospital for two weeks and certainly didn't like that, but then I was home.

I remember the day that they were supposed to pick me up, there was this big hurricane, and a nurse came and asked me if it would be okay if my parents picked me up the next day, and I said no, so someone came and picked me up that day.

I don't remember if it was Dr. [Meyer] who recommended that I have some kind of thumb surgery. It's one thing that polios could do is you transplant muscles. I can't use my right thumb; I can't cross my right thumb over to my pinkie, so someone had suggested that they do a muscle transplant. I remember my parents taking me to see another doctor, and the other doctor saying, "Well, if it were my child, I wouldn't do it." That was the end of that.


Curvature of the spine and surgery

Heumann

So then I had another surgery when I was in college, when I was a junior. I had a spinal cord injury. I had a spinal--


Young

Fusion.


Heumann

Fusion. But I made that decision myself.


Young

That, as I recall, was to prevent curvature of the spine?


Heumann

I already had curvature of the spine. It was to prevent further curvature of the spine and to help correct as much of it as possible. I had good bracing, and the bracing basically had prevented the curvature from getting as significant as it would have gotten if I didn't have good bracing. But I was having pain, and it was also getting to a point where you needed to have it within a certain age range, and I was on the upper end of the age range, so I just decided to do it.



21

Impact of medical professionals

Young

You speak about all of this very matter-of-factly.


Heumann

I've talked about this to people before, so--


Young

You've got it down.


Heumann

Yes, but, I mean, it didn't impinge on my life like I think it did on other friends of mine who were in rehab facilities for months and for years and were sent away from their families for long periods of time. So they didn't really know their family the same way. You know, other friends of mine--it seems like they allowed--their families allowed the medical profession to rule over the lives of the kids. There was also, I think, much more of a feeling that the surgeries that my friends went through were also to make them better. Whereas we had our own things. So I had the tendon releases and then the doctors would say, "Well, if you sit too much, you'll get the contractions again." I remember standing at meals and standing in the car and standing lots of places. It still is in the context of being within the family.

So I think the biggest thing that my parents bought into with the medical community was when the doctors said that I needed to walk, and there was this sense that walking--that I could continue to improve and get better--although I never had the sense from my parents that getting better meant being cured. But, you know, the Germanic approach of exercising and health was definitely part of that. So there was always making sure you didn't eat too much so that you didn't gain weight, because, if you gained weight, it would be too difficult for you to get around. My mother actually told me once that if there was one thing that she could do differently as a mom, it would be not to have worried so much about what we ate, weight stuff.


Controversy about power wheelchair

Heumann

But when I was twelve, I think somebody wanted to give us a free electric wheelchair, which in those days--that was pretty early because at twelve it would have been 1958 or 1959--(I'm just crossing my foot, so when you listen to this tape in the future, you know why all the clicking is going on, because I'm moving my wheelchair back and forth)--but my father wouldn't take the chair.


Young

Why?


Heumann

Because he didn't want me to become too dependent on it, because he felt that if I got it I wouldn't exercise. I think therein lied the problem of the therapies and the therapists. They didn't teach families that, you know, for some people therapy could result in really a greater degree of independence, autonomy, or the ability to walk more normally. In my case, that was never a realistic expectation because I had a certain level of strength that I had regained, and I was never going to get much more.


22

But he had said that when I was old enough to be able to buy one myself, I could have one, but that he wasn't going to get me one. It was really out of this sense that it wasn't a good thing for me to have.


Young

Did you agree with him?


Heumann

It didn't matter [laughing]. Did I agree with him!


Young

Did you really want that?


Heumann

No. You know, was I angry? I'm sure I was. In 1958 or '59 I didn't know people in motorized wheelchairs. There weren't many of them. So if I would have gotten one, I would have been the first on my block, the first [chuckling] in my neighborhood. The first in my town. If it would have been in 1969, it would have been very different because by 1969 already there were many people who were getting chairs. I think "Ironsides" had been on TV and all these different things.

So no, I remember thinking that I was going to get one and when I was, like, twenty or twenty-one, I bought my own. Now, that was very interesting, when I did get my first motorized wheelchair.


Young

Let's hold that for a moment, before we get to that. How are you getting around?


Heumann

I don't want to hold it. I just want to tell you something?


Young

Okay.


Heumann

Because I think it flows from it. I got around in a manual wheelchair, and I had to be pushed, and I could push myself a little bit. But I couldn't push myself up and down a block; I couldn't push myself across the street; and I was never able--I used crutches and braces--but I was never able to ambulate up and down steps at all. I couldn't go up and down steep hills. I had very bad balance; if I fell, I couldn't get up. I couldn't sit down by myself; I couldn't stand up by myself; I couldn't do any of those things.

But, you know, your family helped you. The professionals didn't help me or my family look at what normal transitions should have been and didn't help look at when exercising would have been a good thing because exercise is good for everyone and what type of exercising would have been okay for me or good for me. Like practicing my walking. That wasn't really discussed.

So what basically happened over all of these years was that I wasn't able to build up my strength to do the things that the doctors implied--I don't think they ever said it--but there was this implication. It was an implication not just of getting weak, but an implication of not getting stronger if you didn't do certain things.


Young

It sounds like they felt you should do these things, you should be getting better.


Heumann

No, I don't think it was a "should be getting better." I never felt a "should be getting better." But you needed to do these things so that you wouldn't lose your strength, and maybe if you did these things maybe you'd get stronger. But I was very young when I


23
realized that the "if you got stronger" routine wasn't going to happen to me. I think for certain people, kids, it maybe did a little bit, for kids who had different types of disabilities.


Independence with power wheelchair

Heumann

But I think that what people didn't talk about then either was what are the normal stages that children go through in obtaining levels of independence? What do they do? If you're not able to do those things, what kind of an impact does it have? So, you know, whereas at the age of eight or nine people started leaving their block and starting going places more independently, whether it was to the stores or wherever. I wasn't able to do that, so I always had to have somebody with me because I couldn't literally get off the block and go across the street.

So when I was twenty-one years old and I first got a motorized wheelchair, it was the first time in my life that I was ever out on a street by myself. I don't remember when I first got the chair, but I remember one of the first incidences I had. An argument with my roommate. I left the apartment. I wasn't really angry enough to warrant leaving the apartment, but it was the first time in my life that I could leave the apartment, and I remember [chuckling] leaving the apartment.

I lived in a bad neighborhood in Brooklyn because I wasn't living at home anymore. It was down near Long Island University. Going outside and saying, "Okay, now that you're outside, you can't go right back in." So I went around the block. I remember going around the block, and it was such a liberating experience to be able to leave a place and not have to ask somebody to leave it with you, which of course you wouldn't do. If you're angry at somebody, you're not going to say, "I'm angry now. Would you please push me around the block?" You know, since I had never been down a street by myself, it took me years to learn to do that because I always had somebody to talk to.


Young

What did you have to learn?


Heumann

How to be by yourself.


Young

What was hard about being by yourself?


Heumann

I had never been by myself. I mean, when I went outside, I was never by myself for more than a couple of seconds. You know, I'd go outside my parents' house and roll two doors, and a friend would come out; we would play. But I never went for walks by myself. There never was anything I could do, you know.


Young

Did you think about that at all before you had the wheelchair, that you weren't getting out on your own? Or was it more once you got the chair, you looked back and you thought, "Boy, I've never been out on my own like this!"?


Young

I don't think those are inconsistent. I think it would have been possible for me to think, "What would it be like if I could do these things?" and a whole different experience to


24
say, "Oh, I am doing these things." It's one thing to anticipate what might happen; it's another thing to actually be in the moment when it is happening, and they're very different experiences.


Delayed first-time experiences

Heumann

When I think about those kinds of feelings, it was like when I taught the second grade. I know we're not there yet, but when I taught [chuckling] the second grade, I realized the day the kids were coming into class that it was the first time in my entire life that I had ever been in a second-grade classroom. It was a very bizarre experience because I had never done student teaching. I was in home instruction in the first, second, third--I didn't go to school until the middle of the fourth grade. So here I was with a group of nondisabled children coming into my classroom, never having student taught. But more importantly, having absolutely no experience what it would be like to be in a classroom with seven-year-olds, because I had never been there.

I think they're kind of unique feelings. For me, they really just stick out as something that most people don't experience the same way.


Young

Most people don't experience the same sense of what, exactly?


Heumann

A twenty-five-year-old person, or twenty-three-year-old person, doesn't enter a second-grade classroom thinking, "I've never been here." In any way [chuckling], shape or form. You could certainly think, "Oh, I've never taught this class before." But not "I've never been in a room" because you were in most cases, at the age of seven, in school. So my fantasy is you think back, well, do I remember what it was like? Or I do remember what it was like. And be able to envision what it was like being in school when you were seven years old. For me, being in school when I was seven years old was, I think, in my bedroom with a table.


Young

It sounds almost like it was teaching in a foreign country, just a totally foreign experience.


Heumann

Well, yes. It was creating my own because since--which I know we'll get into later, but--because I had never student taught. I had no classroom experience. I had no classroom experience professionally or personally because I had never been in classes with nondisabled kids till high school. At all. That's a big gap, you know, never having been in regular classes. I mean, I was in school with disabled children from the middle of the fourth grade till the end of the eighth grade, but there the classes were small and the age range of the kids went up to twenty-one. So in my fifth grade class I had seventeen-, eighteen-, nineteen-year-old kids. It was just no parallel.


Young

You talked about things that you couldn't do: that you couldn't push yourself, you couldn't go up steps, you couldn't go up the hills. From my own experience, those were things that were often very difficult for me to say. Is that something that's developed over time, or even as a child could you speak very straightforward to someone? I can't do that.



25
Heumann

No, no. No, because at that time in my life, not being able to do that meant that I couldn't participate, so it was a very different experience, and it was typically a more painful experience that I would probably try not to replicate. You know, it was feeling like why are people making me do some of these things? It doesn't make any sense to me. Which probably was the way I felt when my father said I couldn't have the electric wheelchair.


Pre-Teen life with a disability

Heumann

I mean, I think I was very lucky that I had a lot of good friends in the neighborhood; it was a very close neighborhood. But the older I got, the more problematic it became.


Young

How so?


Heumann

Well, because as long as you lived in the neighborhood and as long as we were young, my friends could physically do things that I couldn't do, but it didn't really matter as much. It started to matter when the kids could go out of our natural environment more.


Young

They could also do things on their own.


Heumann

Could do things on their own, could go off the block, could go in a car and go visit a friend. To go visit friends off the block, because when we were younger we didn't really visit friends off the block that much. We went to family. I'm sure this happened, but I don't remember my friends going to parties for kids in their class. Of course they did, but I don't remember feeling badly about it because there were enough kids on our block that if one person would have been doing something--.

The other thing in my neighborhood is everybody didn't go to the same school. So I think one of the reasons why it had a different impact on me is because the Voehls went to parochial school and the Almskogs went to public school and these were my neighbors.

But, you know, one family went to Catholic school, one family went to the public school, and it was very mixed. So you had about a 50 percent; 50 [percent] went to Catholic school, and 50 [percent] didn't. But so there the kids who went to Catholic school didn't go to the same parties as the kids who went to public school, and vice versa. So you didn't feel badly about it.


Young

Because nobody was part of everything.


Heumann

Exactly. I was a part of everything on the block. So any birthday party on the block, any activity on the block, I went to. I mean, I was in Brownies, and I was in Girl Scouts, and in Brownies, the Brownie troop was not accessible. There were three or four steps to get in. The troop had their meetings in the chapel. My mother would pull the wheelchair up the steps. Then anything that went on inside, I participated equally. We played games. We just did things together.

So I remember things like pick up. You'd stand in two rows facing each other. You'd each be given a number, and they'd put something in the middle. You know, your Brownie


26
beanie or something. And call three, and the three's would have to run out together and pick up the Brownie beanie and whoever got back first won. Well, I couldn't do that by myself. But that was never an issue because somebody did it. So they pushed my chair out, and picked it up. I did everything.

It didn't feel like I wasn't doing it because it was just very natural. One year they went ice skating and said that I couldn't come because they took a bus and the wheelchair couldn't go on the ice skating rink. I remember feeling so badly because it was the first time that I had ever not participated in an activity in Brownies or Girl Scouts, whichever it was.

I definitely remember having to call my friends to come out, to come to the end of their steps and scream inside to see if anybody could come out and play. I remember not liking that. Or feeling a little bit weird, you know? Being out on the street screaming when everybody else would go up the steps and ring the doorbell. At that age, you know, you didn't use the telephone. You weren't calling up and saying, "Arlene, you want to come out?" No one suggested it. It was just go outside and see if so-and-so is home.

But I did go into my friends' houses, and either my family or their family would carry me up and bring me in the house. Because everybody had moved into this neighborhood pretty much around the same time, and the people who were living in the block had known me before I had polio, so it was just kind of a different experience.


Attendance in public schools and distancing from neighborhood friends

Young

Did you ever--or maybe a better question is--at what point did you channel energies differently because of disability? I think, from my own experience, my experience--


Heumann

You're too old. You were old enough when you got your disability that you were A) old enough and B) still young enough to be able to think about these things. But the truth is--


Young

But in the absence of sports, I did a lot more school than I had ever done before. I mean, did you do more with school than, say, your siblings did?


Heumann

No. I mean, really, there were things that went on in part because I was a girl, more at certain points than because of my disability. So for example, my brothers went to Hebrew school four days a week: Sunday, Monday, Tuesday--no, five--five days a week. The girls only went three. But that wasn't disability-related. My brothers worked in my father's store, but my female cousin didn't work in the store. Her brother did. The boys did; the girls didn't.

I mean, everything starts when you're older. I really do not remember much of anything until I went to public school as far as what I did during the daytime. I remember what I did when the kids came home: I went outside. I wasn't studying more because I had been just studying at home with my mother for, like, six, six and a half hours. There was nothing more to study. I didn't have any homework. I did my homework during the day. I read, but everybody in my family read.


27

I didn't watch a lot of television. We weren't allowed to. But it wasn't my brothers any more than me. We weren't allowed to watch television during the week. We had to get permission during the week. We had to get permission to watch television. So that was kind of all uniform.

Now, when I went to high school, that's when things really began to become different because in high school everyone went to a high school via a bus or somebody driving them. Now, it's true that I got driven to school also, but I knew that--I was adult at that point--and I knew that things that were going on were really wrong. So I didn't get to go to the high schools.


Young

What do you mean you didn't get to go to the high schools?


Heumann

Of the kids in my neighborhood.


Young

Oh, you went to a high school--


Heumann

Out of my neighborhood.


Young

I didn't know that.


Uncomfortable in high school


[Tape 2, Side B]
Young

Okay. You were talking about public high school.


Heumann

I always had a long way to go to school. Those were things that I didn't like. I mean, I always had friends on the bus, so it was, like, you just learned different ways of socializing. When I started going to school in the middle of the fourth grade, I was spending up to four hours a day on the bus. It was a minimum of three hours a day, but you could spend three to four hours a day on a bus. That's when things really were also different. When I was in home instruction, I wasn't with anybody during the day, then I was with my friends.

When I went to the public schools, I was making different friends, but none of the people in my neighborhood knew the people that I was meeting because whereas we had a neighborhood where you had 50 percent in parochial schools and 50 percent in public schools, the kids who went to public schools went to the same school, except for me.


Feeling different

Heumann

The experiences when I got older, when I went to high school, were much more difficult because I felt different. I think teenagers feel different in any circumstance, but I very


28
much felt it. Actually, as we talk about it, not having a motorized wheelchair was a very big problem because I had to have people push me in school, and they had aides who would push you. In elementary school they would have the aides, but it was just the classes for disabled kids, and it was also a hallway. I could push myself up and down the hallway. It was a flat surface. That I could do.


Young

It's hard to feel cool if you've got a personal aide pushing you around.


Heumann

Exactly. You know, my fantasy is some people push themselves really smoothly and easily, so it didn't matter, but I couldn't do that, so I never felt comfortable in the high school, ever. I think I can honestly say I never felt comfortable in the high school. I always felt different. I always felt like I didn't really belong because I went from this segregated environment where what I had in common at least the classes with kids who had disabilities or who were being bused in. We all had kind of like a similar identity of sorts. Not personalities, but identity.

Then, in high school, it was you were going from classes of eight to ten to classes of thirty to thirty-five. Now, the only time that I felt comfortable in high school was the first year I was there. There was tracking in the schools in New York then. There was academic, commercial and general courses. I was taking academic courses.


Young

Can you say a bit about what the three were?


Heumann

Academic meant you were on college track. Commercial meant that you were vocational track. You know, secretaries, bookkeepers. You could go to community college and things like that. You weren't going to go to college because you weren't taking the same courses. The general track was for the dummies.

I was in the academic track. For the first year in high school, the special ed kids in the general course, you took all your classes in the homeroom, together, I believe. Factually, I know for myself if you were on the academic track, you took three courses with disabled students only, and two classes out. The two classes I took out were language and math. I took algebra and I took about one day of Spanish because when I went to the Spanish class, there were no disabled students in the class. The other two students who were on the academic track in my class, my freshman class, disabled students took French, so I un-enrolled in Spanish and went into French because I was afraid of being in the class by myself.

Now, there were thirty-some children. I clearly was not in a class by myself, but I clearly felt like I was by myself amongst all these kids. I didn't know any of them. I had no opportunity to meet them because at the end of our classes we left. The only class time that's nonstructured is homeroom, and homeroom we had with all the disabled kids. So the truth is in high school I would feel reasonably comfortable in the classes with the disabled students. I knew them; we were on the bus together; dah-dah-dah-dah-dah. I didn't feel comfortable in the regular classes.

Which isn't to say, at all, that the special classes are better than the regular classes, but it is to say that for me it was very difficult making those transitions. I think I felt very different when I was out of the environment I grew up in. My disability when I was younger, I don't want to say it didn't mean anything, because obviously it meant a lot to me and I


29
realize that my family was doing a lot more for me and my brothers maybe resented things that they had to do for me, or I felt that way.

When I was younger, I was already beginning to measure when to ask for what because I had to ask for so many things that, you know, I would be able to feel people not wanting to do certain things. So you kind of learn early on. Okay, there are three things you want, three things you need. What do you need now? What can you maybe give up on? What do you need of those three later? You began to think a lot about how to work your environment or manipulate your environment to be able to kind of ferret out who was into doing what and who wasn't into doing what.

So the high school was always uncomfortable, except for the homeroom time. I never dated in high school. I went to summer camp. That's something we can talk about another time. My experience of being in the disability community is that it's an emotionally qualitative different experience.


Young

Being in the disability community meaning having a disability or when being among people with disabilities?


Heumann

For me, having a disability, being amongst others who have disabilities.


Young

You have identified a whole bunch of stuff. Shall we stop for now?


Heumann

I think so. I'm tired.



30

31

III. Education, Summer Camp, and Early Activism

Relationship with siblings


[Interview 3: May 4, 1998] [Tape 3, Side A]
Young

Let me come back to a couple of things from last time. The first one is you mentioned really briefly that your brothers resented things about you. What kinds of things?


Heumann

Well, my brothers and I have never had this discussion, but I've gotten the feeling that as we got older, since I was the oldest, when I, for example, was taking voice lessons, and my father brought me into the city a lot, but if he couldn't do it, he would have one of my brothers do it. I've talked to a lot of my friends, and we all have--not all--but many of us have a similar experience about siblings who buy places that are not accessible and how we feel really badly about--

[tape interruption]


Heumann

You feel really badly about how--you know, why? What is the statement that is being made when a brother or sister buys a house that you can't get into?


Young

If anybody would think to, you'd think that your siblings would.


Heumann

Yes.

[tape interruption]


Heumann

So there just has sometimes been that feeling, like that they had responsibilities to do things for me that they wouldn't have had if I didn't have a disability. That's just been a feeling I've had.

Then my one brother has a place that is pretty accessible. They built the house. My other brother had a house that wasn't accessible, another house that was accessible, and the newest house is very inaccessible, so that's--



32
Young

It kind of went from bad to worse.


Heumann

Yes, when I had polio, my mother was nine months pregnant with my brother, so I was in and out of the hospital for a year and a half right at the time he was born. So I'm sure that while my parents always did their best to divide their attention, my mom was still in the hospital visiting me a lot after he was born. Even when I came home, I needed a lot more help. So I'm sure all that's there.


Continued dependency on family

Young

You said that you had to think about what you could ask for, what you should ask for in ranking things of importance. Can you give some examples or talk a little bit about what kind of impact that had on you?


Heumann

Well, I think my mother was the provider for myself and my two brothers as far as what the mother's role is: the cooking, the cleaning, driving you here and there, and doing all these different things. But as each one of us got older, my brothers were able to assume more responsibilities. I still needed help with getting dressed, going to the bathroom, everything, and my mother had three of us to get out the door.

For example, sometimes she would just take out the clothes that she wanted me to wear, which would really annoy me, because I couldn't get to the closet myself. They'd been given bad advice by the contractor. When I had polio, they decided to expand the house out, and they put a bedroom and a bathroom on, but the bedroom was too small so that there wasn't enough room for the wheelchair to go to the closet. So my mother would just go in and take out what she wanted. If I didn't want to wear what she wanted me to wear, well, that turned out to be a fight, because, "I don't want to wear that." Well, you're separating yourself at that age when you're in high school, and, you know, kids can go into the closet and get their own clothes. I couldn't do that.

If I wanted to go someplace, if I wanted to go outside or just whatever it was, if I needed help to do it, it meant that I had to ask somebody to do something. Of course, they were most of the time doing their own thing, no matter what it was, and so they would have to stop what they were doing in order to help me with what I was doing. So that has always felt like an intrusion.

When I'm paying people, it's a lot better; although, even there, if people are resistant to doing what they're being paid for, it still means that I have to be more assertive, but at least I feel like I'm paying somebody for the service and so--


Young

It's not a favor.


Heumann

Exactly. It's not a favor, which is a whole other set of issues about when is a friend a friend, and, you know.

But, so I think those were some of the issues. You know, feeling badly when people would say no to things that I knew that I--if I didn't have my disability or if the


33
environment was accessible--I could do without asking. Even the ability to get into trouble was limited because I couldn't. [laughs] Clearly, there were a lot of things I could get into trouble with, but there were things that I couldn't do, couldn't do the same kind of exploring or--


Young

I hadn't thought about the trouble part, the separation part, that even to do something like wearing clothes to kind of get in your parents' face in some respect, they still had to kind of help you to do it. That kind of really undermines the whole idea that you do something--


Heumann

My mother never wanted me to wear pants. She used to say, "They're too hard to put on with your braces," but the truth is my mother doesn't like pants on girls and women. I don't think she really minds it anymore, but she never wears them, and she only wore them once in a while for really, really casual things. So if I would have been able to go out by myself, I could have gone out and bought my own pants and put them on. So we would have had a fight about it, but that's kind of a normal thing to do.


Young

Did you ever win the fights over clothes or whatever?


Heumann

Oh, sure, sometimes, but it was an unfortunate tension, I felt, that went on. I mean, it wasn't like an overall, pervasive tension, but it did make me realize that there were different things that I had to balance.


Young

Did this--your need to kind of think of this thing or that thing--did that mean that needs went without being met, that things that you maybe really did need, you still felt like--


Heumann

Essential things never went undone--you know, going to bed, getting up, going to the bathroom, eating, doing all those kinds of things--that never went undone. But, you know, what is essential to a teenager? It goes beyond that. So it's really why I encourage families to start using personal assistants, if they can afford it or get money for it, as early as possible, because you really want to be able to have a way of having some natural divisions. One of the things that you want to be able to do is also learn a level of independence and autonomy, that you're really learning if you don't have a disability like mine.


Young

I hadn't thought about that, but that makes a whole lot of sense--it gives a person that tool to learn independence.


Heumann

You do learn earlier to be a manager. It also enables the parents to begin to separate, because that's the other thing that goes on. Because when a parent has to continue to provide support of a type that they wouldn't be providing if their child didn't have a disability, then I think it also causes some of the issues around separation and overprotection.



34

Life in special education classes

Young

I'm going to make a little bit of a jump and go over to some of the experiences in school. I talked to Neil Jacobson for quite some time.


Heumann

Oh, really?


Young

He told me some good stories about you and PS 219.


Heumann

He's got a good memory.


Young

He described you as "a political dynamo."


Heumann

He was five! [laughter]


Early activism

Young

Talking about you organizing from the earliest days that he remembers. He described you getting people together to talk about ways that you could better get what you all needed, and he was telling me about some really early examples of activism.


Heumann

I mean, I think I remember that in the program that we were in, after lunch period we had a rest hour. It didn't matter how old we were--and these kids went up to twenty-one in our program--there had to be a rest period. [laughter] I do remember talking about how ridiculous it was, and talking with the kids about it. Of course, there was nothing that you could do when you're ten, eleven, and twelve, but we were talking about it.

We also were talking, even at that point, about how we felt, having disabilities: how we felt different, how we didn't understand why we were being treated differently. I remember my mother did organizing, you know, working with parents and trying to improve what was going on in the classes and getting the board of ed to open up some schools so that we could go to high school if we were in wheelchairs. I used to feed a bunch of kids at once. I was always hyperactive--not hyperactive--I needed to do a lot of things.


Young

He said you were a very rowdy kid.


Heumann

[laughs] Uh huh? Maybe he was very passive. [laughter] I mean, I was never a passive kid. I think when I was in an environment with other disabled kids, I definitely felt more comfortable. I think we went to camp together, Neil and I, too. You know, I was always more outgoing in those environments.


Young

Now, you said you got together and you would talk about how you felt about disabilities or about your experiences. Did you find that your experiences were quite similar, that you felt like you shared things in common? You know, because normally there are a variety of disabilities represented.



35
Heumann

Oh, yes. No, we definitely--I definitely did. The fact that we were all in the same program meant that we shared something, because none of us were going to our neighborhood schools, and all of us were driving these ridiculous amounts of time to get to school. I think I felt more valued than the kids who were older in the program. Clearly, when I was ten/eleven, there were kids in the program who were seventeen, eighteen, and nineteen, and they were kids, particularly, who had cerebral palsy and speech disabilities. Neil was another generation, really, when he came into the program, because, had he been ten or twelve years older, he wouldn't be where he is today.


Young

Because they weren't taking the time to work with speech or to do classwork?


Heumann

No, because there was no expectation for kids to graduate. I mean, this was a public school where everybody left in the sixth grade, except if you were disabled, and then kids stayed there until they were twenty-one, and then they went to shelter workshops.


Young

Oh, so it was just sort of a holding ground, not really a progressive, developmental ground?


Heumann

[laughs] "A progressive, developmental ground." You're cute. [laughs] No, I don't think so! Nope. No, there was no expectation.


Creating a disabled movement

Young

Neil said, quote, "I grew up with the disabled movement mentality, even though there was no disabled movement." What exactly do you think he meant by that, and would you say the same for yourself?


Heumann

No, Neil was always more of an outsider. He kind of didn't really blend. So I think I could see him feeling like he grew up feeling that way, because the movement evolved. I mean, given the fact that we didn't know anything about the history of what was going on in the disability community across the world when we were growing up, we were kind of not even knowing, but we were creating as we were going. So we were the movement. Do you know what I'm saying? We weren't waiting for somebody else to create the movement that we would be a part of; we were creating. We knew it. I mean, I knew it, and my friends who were active in what was going on--we knew that we were creating something different.


Young

Well, I'm thinking there may have been a time when you didn't think in movement terms, but you were doing movement type things. Would you say that that idea of creating something came pretty early?


Heumann

Yes, I think it's true. You have to realize the time that we were living in. I mean, in the time that we were living in, there were a lot of movements. So it's true that when I was six years old I had no idea, when I was nine years old I had no idea, but when I was in college--well, we knew that we were doing something different because people were giving us a response, either yes or no. There were things that were going on. I think we really started doing a lot more work toward the end of the sixties when some of my


36
friends and I were searching out that we weren't satisfied with what was going on. That we were at a point in our lives when we were realizing that we weren't going to have the same opportunities that other people were. That the environment around us was both physically inaccessible and the people around us didn't seem to share our ideals and our vision of what needed to happen, because they were talking about why what we wanted couldn't happen or was too expensive or we had to wait or whatever it was. Even at an early age we knew that we were doing something different, and maybe we didn't call it a movement in the sixties, but we definitely knew that we were change agents, because people responded to us: disabled people responded to us in positive ways and nondisabled people responded to us in negative ways.

So, you know, with the women's movement, with the African American movement, with the antiwar movement, there were very similar parallels: people who agreed with you supported you, people who didn't agree with you, didn't support you. You began to see that authority figures were more likely not to support us, and family members and disabled people were more likely to support us.

I think part of the issue was, since we were creating it as we were going, it was as much for us to overcome our own personal limitations about what was right and wrong, because I grew up in a community where demonstrating wasn't something that really happened. My parents had questioned authority, but it was something that didn't come naturally. I mean, it did, over time, become natural because my mother and father learned that if you didn't challenge, you didn't get. So, for me, that was something that I had learned when I was younger. You know, I wouldn't have gone to high school if my mother hadn't organized the parents. That's the only way we got to go to high school. But I always felt like I couldn't be an observer; I had to be in the middle of it, just because of who I was.


Young

That rowdy kid that you are.


Heumann

Yes. [laughs]


Importance of education to parents

Young

Your mother really took education seriously, and--


Heumann

My father, too.


Young

--wanted to find as many educational opportunities as possible, and one of the examples that she described was vacation bible school, that she wanted you, since you weren't getting the classroom experience in--


Heumann

Oh, is that why she set that up?


Young

That she wanted you with nondisabled kids and the classroom experience.


Heumann

Right.



37
Young

A lot of kids just think school is the worst thing. I mean, were you ticked off at your mom because she kept trying to put you into school or were you really with her, thinking that this was a good idea?


Vacation Bible school

Heumann

Vacation Bible school was not school. It was a summer program.


Young

Right.


Heumann

There was a lot of singing and recreational stuff, and kids like being with kids. I mean, I enjoyed it. Otherwise, what do you do? You stayed at home. I was young. I probably was less than nine.


Young

Well, she described a really interesting experience in that case, that this minister sort of went out of his way to do everything that he could. And your mom described one instance where--I'm forgetting the detail now--but there was some portion of a day that--


Heumann

And she told him I didn't need to go there, and he--


Young

And he kind of--


Heumann

And that was her way of also setting limitations.


Young

She said, "If Judy's going to be a part, she's going to be a burden."


Heumann

Mother might have been saying that carrying me would have been unnecessary. [added during editing: My recollection was that my mother wanted me to be included in the Bible school program and felt it was not important for me to be carried downstairs as only a brief activity occurred in the basement. She worried that if it was too difficult, people wouldn't want me back. Pastor Topper (I believe) understood that I needed to be a part of the group the entire time. Parents straddled a fine line--always worrying about exclusion, pushing for inclusion, few role models or peers they could talk with.

My mother told the minister he did NOT have to carry me up and down the stairs. He felt it wasn't a problem. I know my mother was happy that he did carry me even though she said he didn't need to. She would speak about the minister and how nice he was.]

She said I was a burden, so I thought of things as burdens, too. You know what I'm saying? You kind of accept. Even though she definitely pushed on things, there were certainly areas where she didn't push beyond.

So it was inconvenient for him to do it, or he didn't have to do it, and they weren't down there a long time and it would have been all right, but he was a very nice guy, because he understood that everybody is going, and if I don't go, that's very weird.


38

So I think there is this feeling amongst parents that you don't want to be a burden and your kids will adjust.

There was, I think, a feeling based on the program that I had been in, the special ed program, that from the very minute you got into the program you were screened. The parent had to go to school with you for a week, you had all these assessments, and they actually voted on whether they would accept you in the program. I don't think there was anybody who was ever necessarily not taken, but there was always the sense that they didn't have to take you, and if they wanted to get rid of you, they could. There was no reason to believe that wasn't true.


Young

I presume that you began to guess that's the way it works everywhere, so he must have surprised you with his eagerness.


Heumann

I think I was too young to--I mean--


Young

That's true.


Heumann

The truth is, it wasn't a big deal for him to carry me up and down the stairs. My father carried me up and down the stairs all the time, so I didn't think anything of it. I think if it would have been a woman I would have felt differently, but it didn't seem like any big deal to me.


Young

The experience at Hebrew school, also, seemed interesting, because maybe the argument in the public school system was that you couldn't integrate these people with disabilities into the rest of the classroom, and yet it seemed to work quite well at the Hebrew school.


Denied Yeshiva experience

Heumann

It was an after-school religious program, so it was like we went there three times a week. Yes, you never thought anything about it. But when they tried to get me into an all-day Yeshiva, I didn't get accepted.


Young

Oh, she didn't tell me that.


Heumann

Oh, yes. What happened was my parents decided that since I wasn't getting into public school, they would try to get me into a Jewish day school, which is not what their first choice had been for us. They wanted us to go to public school. So my mother found this one program. When I was going into the first grade, I was going to be six, and the principal told my mother that I didn't speak enough Hebrew, and that I couldn't come into the program because I didn't speak enough Hebrew. So my mother had me tutored, like almost every day, by this native-born Israeli woman. And then--


Young

You spoke better than him.


Heumann

But they didn't accept me into the program. When my mom called back and said, "You know, you wanted her to learn Hebrew," then he said, "Oh, it's just not going to work."


39

So, but then there was another Jewish day school that was opening up, but I was in the second grade, and they were adding on a year at a time, so I was going to have to go back into the first grade. My parents decided that they didn't want me to go back to the first grade because I was doing work above second grade, and they thought that it would be holding me back too much. So I didn't go there either.


Entrance to Hebrew school

Heumann

But, no, there wasn't any difficulty in that. The first Hebrew school that I went to was in a synagogue that we went to, and it was all relatives, so no one would deny me coming in. It was all family. Then the other one we went to was in the neighborhood where my father's store was. So, you know, you paid your money, and my mother brought me there and picked me up, and that was that.


Young

With the Hebrew education, the classes--was that very important in sort of developing who you are?


Heumann

It's funny, I didn't feel uncomfortable in those classes, because, in part, they didn't feel as competitive. I mean, you got a grade, but it wasn't the same thing.


Young

You did get grades?


Heumann

I think we got grades.


Young

I was thinking it was like the Christian Sunday school where it's just kind of, you know, you talk about stuff. So there were actually--


Heumann

We took Hebrew classes. I mean, you learned Hebrew. We didn't learn Hebrew that much, because it was only a short period of time, but that's where I learned to read Hebrew, was in Hebrew school.



[Tape 3, Side B]
Young

Not just in regards to disability, but in terms of your religious identity, I know you talked about synagogue at least at varying points in your life playing a pretty important role. Were these Hebrew schools--was that a pretty good thing for you as far as--


Heumann

Oh, yes. I liked my religious experience. I mean, I think it was very clear that Judaism, well, I mean, religion is people, so there certainly are some Jewish people who discriminate against disabled people, just like everybody else. But in the environments that I was in, because they were so closely knit to my immediate family, I always found it to be an important experience for me, a social experience. You know, I'd go to synagogue, I'd see my cousins and my friends, and so more often than not I liked it.

I think, as an adult, being Jewish is an important part of my life because I think of what happened to my grandparents, and the customs and the traditions are important to me.


40

[tape interruption]


Attendance at summer camps

Young

You talked about camp as being really important in terms of your childhood. Tell me about the camps you went to.


Heumann

I went to two. Well, actually, I went to more than two camps. I went to two overnight camps: Camp Oakhurst and Camp Jened. Then I remember I went to some summer camp run by a community center once, I think, which was with disabled and nondisabled kids, but the other sleep-away camps that I went to, the campers were all disabled.


Young

Was this like a week-long camp?


Heumann

No.


Young

Or a whole summer?


Heumann

Camp Oakhurst was three weeks, Camp Jened, you could go four weeks or eight weeks. I did both over the course of the years. I guess when I was a junior in high school I didn't go to camp because I failed chemistry. You know, I'm not sure about that. Maybe it was when I was in college that I didn't go to camp. But I went to camp from the time I was nine until, I think, I was a freshman in college.


Young

Wow. Did they group age ranges, or was it kind of like a public school, with everybody together, all the ages?


Heumann

No, the bunks were age consistent.


Work at camp

Heumann

I'm trying to think. I worked at the camp one summer, and I think it might have been in 1969 or 1970, after I was out of college, I think.


Young

That you worked there?


Heumann

Yes, and that was unusual, because the camps usually didn't have disabled people working there. The counselors were nondisabled, and the campers were disabled.


Young

What kind of dynamic did that create?


Heumann

Well, when you were younger, you really didn't see it as much because there were counselors and campers, but when you began to get a little bit older and you were fifteen and sixteen years old and were a camper, and the people working in the kitchen were


41
fifteen and sixteen years old, then you did begin to say, "Hmm, how come we don't have those jobs?" I don't think we said it all that much out loud, but there was definitely this feeling that there were these spoken and unspoken rules.


Freedom at camp

Heumann

I think why I liked the camp a lot and why friends talked about liking the camp a lot was, one, we were away from home, and you know that was true for most kids. They like being away from home. But, in addition to that, I think, we weren't as restricted because we were away from home. We didn't have the same rules--which, again, I think, is typical for any kid. Also, our friends were all in the same place. If you were home and you wanted to go visit a friend, someone needed to give you a ride to get there, and that would make it more difficult to get there. Or, maybe a friend that you wanted to go visit--their house wasn't accessible, so you couldn't get in. But here it was like everything was just there, it was just easier to get to. Also, dating was something that started pretty early on, and a lot of us didn't date when we were home. So people had relationships when they were in camp, but when they went home they didn't have relationships, I mean, dating kinds of relationships.


Young

Did staff encourage that or discourage that? Or were they kind of indifferent?


Heumann

I went to two camps that were not repressive around things like that. So it wasn't like they encouraged or didn't encourage, it just was there and people accepted it. You know, depending on the counselors, I'm sure they encouraged it about the same level you would have seen going on in other camps that allowed that type of stuff to go on. But I know for some--I think a lot of us--it was really a very important part of our lives. We talked favorably about it. I think camp was more important to me, probably, than to my brothers, because I don't recall them talking about it that much, and they didn't go as long as I did because they started working.


Young

It sounds like it would almost give a rival vision of social order that you could envision that life could be better by the accessibility and the openness to dating and other examples that maybe gave you a little bit of a charge for wanting to change the world out there.


Heumann

Yes, and I think there was also an opportunity, again, for us as we got older to talk about, because you were together with people for at least three weeks, four weeks, eight weeks, so you really did get to talk about things in a more in-depth way. Just regular teenage things, as well as personal and feelings and things like that. So I think that was always very helpful.


Young

What was the daily life of camp structured like?


Heumann

Did you ever go to camp?


Young

Well, I kind of had some bad experiences in camp because I went to a religious camp.



42
Heumann

Well, you know, you got up to somebody making a noise of some kind, usually, and got dressed and went to breakfast and came back and cleaned up your room--or bed because we were in a shared room--then you had different activities. Sometimes you had swimming, you'd have sports, you'd have, whatever, arts and crafts, drama. It was camp. We had lunch and rest period, [laughter] and then activities again, and dinner and activities at night.


Young

Were the people at camp pretty progressive? The staff? Or did you experience a lot of paternalism there as well?


Heumann

No, the camps that I went to, the staffs were college students, and they were, as a rule, pretty cool. I don't really remember feeling that the counselors treated us much differently because we had our disabilities. They were the camp counselors. It didn't feel oppressive at all.


Cross-Disability camp attendance

Young

Did these camps have representation from the whole variety of disabilities?


Heumann

One of the camps that I went to did. Camp Jened did. They had mainly physically disabled individuals, but they did have some blind people, and some deaf people, and multiply disabled people, and some people with mental retardation. That Camp Oakhurst that I went to was primarily physical disabilities.


Young

There or in school, did you feel more naturally drawn or attracted to people with certain types of disabilities than others, or did they all seem kind of the same to you in some way?


Heumann

What do you mean, "attracted to?"


Young

Were you more likely to become friends with people who had polio, or just as likely to hang out with people who were blind or had cerebral palsy, whatever?


Heumann

I didn't know that many blind people because in the school I went to there weren't any blind people. In the camp that I went to there were a few blind people. You know, I was drawn towards people that I could talk with, but for that, for me, it didn't matter if people had speech disabilities because when I went to elementary school, I went to school with kids who had cerebral palsy and so it was just like kind of normal for me. No, it didn't seem unusual, any more unusual than the whole thing was unusual.


Awareness of hierarchy of disability

Young

A lot of people talk about the hierarchy of disability. Is that something that you, if not felt, witnessed or experienced?



43
Heumann

Yes, I mean, I think I definitely remember feeling it when I was in elementary school. In the fifth and sixth grades they would select a certain number of students who were good students, and they would be able to come down and help us get our coats off and do different things like that. That's when I would realize that the nondisabled kids saw us differently in the class. So the kids who had cerebral palsy were treated differently by them. I was definitely aware of that. We didn't see them very long, they would be there for fifteen, thirty minutes at the most, but those of us who had disabilities like polio or muscular dystrophy were more likely to be the ones that they conversed with than the kids with cerebral palsy. So that was something that I definitely noticed.

I think the more nondisabled you are, the more opportunities you have, just because you can get around and do things. On the other hand, I've also felt that people whose disabilities appear to be less significant sometimes have more significant emotional problems than people who have more significant disabilities.


Young

How so?


Heumann

Well, not being one of them, this is just my speculation.


Young

That's okay.


Heumann

My speculation being that you're almost there, but not quite, and that people with more significant disabilities don't necessarily accept you either because you can do so many more things than we can do, and nondisabled people don't accept you because you're not nondisabled. So you're kind of neither in one world or the other and trying to figure out an identity. My feeling was that people who had less significant disabilities couldn't easily decide, "I want to be here," or, "I want to be there." Because they really wanted to be with the nondisabled world.


Young

Good perception, speculation. You said you never dated in high school. How about at camp?


Interracial dating at camp

Heumann

Oh, I dated at camp all the time, but I never had a date in high school.


Young

Any stories you want to share with the public?


Heumann

About my dating? Oh, well, you know, just the general. You know, at camp you were kind of not "in" if you didn't have a boyfriend, and I had a boyfriend from the first year I was at camp.

The thing about the camps was they were also racially integrated, just like our schools, which was, of course, very different than what was going on. I mean, our special ed classes were racially integrated in a school that was basically almost 100 percent white. While my brothers went to camps that were white, I went to camps where we were everything.



44
Young

Was there a lot of interracial dating?


Heumann

There definitely was. I mean, my first boyfriend was a Puerto Rican guy. My friend Carol actually wound up marrying a guy who was an African American. Yes, people had relationships based more on who they liked.


Young

Do you think maybe because people with disabilities, by experience, learn more to look past the skin, the sort of bodily differences, that they were more adept at race issues?


Heumann

To a degree. I mean, we went back and lived in our communities that were pretty segregated, and so we had different experiences than our family members, positive experiences that family members didn't necessarily have, because they didn't necessarily have any experience. But I think you learned on the face of it that your friends were your friends, but you also learned that there were some subtle divisions that went on.


More on hierarchy of disability

Heumann

I want to say one other thing. I forgot that one of the camps that I didn't go to was a camp called Camp Corolla. Camp Corolla had summer camp, but then they also had weekend activities all year round. The woman who ran the camp was a woman who had a mild disability. I used to go sometimes to their Saturday programs, but there you saw the hierarchy was very much in place there at that camp.


Young

More so?


Heumann

I felt very much like I was not a part of the hierarchy. Of course I think it was in part because the kids who went to camp in the summer and went to programs over the year knew each other more than those of us who came from the outside and only came in on the weekends. I think, well, it wasn't just those with less significant disabilities because some of the people who were in the in-crowd had less significant disabilities.

But, yes, for me, whenever I was around disabled people, it felt and feels more comfortable. You know, being attracted to other people was just something that I assumed is more like what nondisabled people do, because you didn't have all these questions, you know, disability/nondisability-related questions. There were more, What's he or she like? Would I like them? Would I not like them? Are they too disabled, could they help me with what I really needed? You know, those. It did get into disability stuff sometimes, too, but it wasn't as much, I think an aversion as a practicality kind of an issue.


Young

In regards to dating, you talked about the power chair when you were twenty or eighteen or nineteen. When did you get the chair?


Heumann

I think I was a senior. I either got it at twenty or twenty-one.


Young

Okay. That would be the first time that you were able to get out and be about by yourself. What was dating like in camp?



45
Heumann

You mean without having the motorized chair?


Young

Or not necessarily the chair, but--


More on dating in high school

Heumann

Dating in camp is different. You know, it's like you sit next to somebody at the movies, you dance with them at a dance, you kind of go hang out with them on their porch during rest period. [laughter] I mean, it's different. The environment, the area in which you have to deal with is a much smaller geographical area.

One summer I had this nondisabled guy as a boyfriend. He worked in the kitchen. What is his name? Then I remember he went into the navy, and he came back and visited me one summer, one time. Bob Skirmack or something like that. I did have a crush on my counselor who wasn't disabled. I remember thinking, "No, he's not disabled. He wouldn't be attracted to us." But, you know, then of course we were campers and he was a counselor, and campers and counselors didn't go out together. But my friend Carol did start going out with one of the counselors.


Young

That must have made quite a story around camp.


Heumann

I'm trying to think. It might have been while we were at camp when she was older--sixteen, seventeen. [laughs] But I never dated in high school.


Young

Why not?


Heumann

Why not in high school? I don't know. I didn't live in the same neighborhood as the school because we were bussed. So we didn't get an opportunity to really meet people the same way, and I never felt very comfortable, you know. But I think one of the big issues was there really wasn't an opportunity to really socialize, because the only non-structured time during the day was in homeroom, and homeroom was just with the disabled kids. I never felt really interested in any of the disabled guys.


Young

So did your bus pick you up right after school ended?


Heumann

Right.


Young

So you didn't have the option to get involved in any of the extracurricular activities?


Heumann

No, I did for two years get involved and sing for a class production, and then my mother would pick me up after school and take me home.


Young

That really does impinge upon the social life. And the clubs, the different clubs, those are really the primary way, often, that you get to know people.


Heumann

Nope.



46

Feeling uncomfortable in high school

Young

What sort of accommodations were necessary in high school? Did you have an attendant at that point while you were in school?


Heumann

I think then there was an aide there who would help us. I'm trying to remember. I don't really remember that much, but I know that there was. I don't remember the name of the person, though. Sometimes my friends would help me.

But in high school I just remember mainly not feeling that comfortable. I don't think it was an all-out consuming feeling because when I came home on the bus I was with my friends, and I certainly had friends who were part of the special ed class, and we socialized after school and talked on the phone a lot. Then I had my friends who I'd made in elementary school, and I was still friends with them throughout high school, and I had my friends in my neighborhood and my family. I had a lot of friends. I always had a lot of friends.


Young

It sounds like most of your best friends were people with disabilities.


Heumann

No, and friends from my neighborhood--none of them had disabilities. So, my friends in my neighborhood--none of them had disabilities--my cousins didn't have disabilities, the kids that I met through religious school didn't have disabilities, and then there were my disabled friends.


Young

Do you think there was a reason besides just not being involved in the extracurricular activities that you didn't feel more comfortable with nondisabled people in high school?


Heumann

Yes, because we never had time just to be. I think if there would have been time just to kind of hang out, a neighborhood. I mean, everybody in my neighborhood was nondisabled.


Young

You were feeling comfortable in other nondisabled environments.


Heumann

Exactly.


Competitiveness of regular classes

Heumann

I think one of the things that went on in high school, one of the very big issues, was that it was competitive. I had been on home instruction until I was in the middle of the fourth grade, and then I went into these separate classes which were non-structured and not a lot of academics going on. I was smart. You know, I have no idea how I learned, because I wasn't really given much instruction, but when I was doing testing in the fourth and fifth grade, I was reading at a twelfth-grade reading level and things of that nature. So I did a lot of reading at that time. But when I got to high school, when I took the classes with the disabled kids, then I didn't feel nervous, the classes were small. We had the regular


47
curriculum and were being tested on it, but I didn't feel as nervous as I did in the regular classes.


Young

How did you do in high school with grades?


Heumann

My grades were in the eighties, I think, right between, depending on the course, but my average was probably something like eighty-six to eighty-eight overall. Then there were a couple of courses that I took--

[tape interruption]


Heumann

I took stenography, typing, and business law. I loved those courses. They were great. I got, like, ninety-sevens, ninety-eights, ninety-nines.


Young

Did you use any aids to type?


Heumann

No, I was a good typer. I never felt uncomfortable in those classes. Those three classes. Again, I don't know what it was. Maybe the typing and stenography were different types of courses. There you learned to do it, and it was very tangible, we could do it. You could type, you could type accurately, you could type fast. You could do your stenography, you did it well, you did it fast, you did it accurately. It was kind of very clear, but when it got into the more abstract, I think it was both the issue of abstract and, you know, like in English and math I hadn't had a lot of the framework for it. So I remember being in classes as they were reviewing what people had learned.


Young

You said, "Wait a minute! I never got that."


Heumann

Well, no, but that was right. Then I would get really nervous.


Young

And you don't want to admit it.


Heumann

Right, what was I going to say? Exactly. So I always felt like I was struggling to learn it.


Test-Taking nerves

Young

Did the teachers treat you much differently?


Heumann

I don't feel like the teachers treated me much differently, no, but I remember my parents came home from open school night once and said to me that almost to a teacher had said, "Judy comes to school, she does her homework very well, she participates in class very well, but when she has to take an exam she always looks very nervous." I selected graduate schools based on schools that didn't require me to take a graduate exam.


Young

But it doesn't sound like you, somehow. Why the nervousness with the tests?


Heumann

I don't know. It's the grading, it's the competitiveness, it's feeling very insecure about getting a wrong answer. But I think it really is because I wasn't prepared to do it. I mean,


48

I was in such an unstructured environment for so long. My family, you know, we had a very verbal family where we talked a lot, we interacted a lot, we were pretty aggressive in expressing our views. Definitely we had lots of debates, and that I didn't feel insecure with, but there's just something about the final analysis of, you know, taking these tests that I've never done well on.


Thoughts on cutting slack

Young

Feel free to roam off your personal experience here on this question. In talking with other people--you know, I'm talking with a lot of people now--you get the sense that in different school environments people will "cut slack" for people with disabilities. [pause] They'll try to pave the way a little bit, but then end up doing a real disservice down the road because then you don't learn some of the skills that you need to be out in the competitive business world. Do you have any thoughts about that?


Heumann

Oh, I mean, I think it's definitely true that--speaking for myself--there wasn't any slack to cut in elementary school. [laughs] I mean, there wasn't much there.



[Tape 4, Side A]
Heumann

I mean, I think the other thing that was also going on in high school was the fact that I didn't--you know, we said this earlier--but I think the fact that I didn't have a motorized wheelchair had a very big impact on my ability not to feel independent and to feel self-conscious. I'm trying to remember about the aides that they had there, because I remember, you know, going to the bathroom was a problem. So there were always all these other things that were going on that never made things exactly right.

But I don't ever remember any of my teachers grading me higher. No, I don't. I don't ever remember feeling that way. I do think it's very true that sometimes teachers pass kids on--it's not just disabled kids--for whatever the reason. At that particular time it's not a good idea to hold kids back because holding kids back is considered to be a stigma.

But I think to me it's more the issue of watering things down. So if you were in special programs, it was much more likely that your program was not equivalent to the program that the nondisabled kids were learning from. I think it's more problematic when you're in those programs. When kids maybe are being graded differently and people don't know it. I mean, families have told me, "I thought my kid was on the honor roll. Well, it turned out they had a special ed honor roll." The family wasn't told that it wasn't the regular honor roll. But I think, as I said, when I was in school, it was more the issue of kids not being given opportunities, rather than cutting them inappropriate slack. It is a different time now. But the kids that I went to school with who went to shelter workshops--nobody cut them any slack.


Young

That's kind of what I meant, maybe cutting slack as to not giving them the opportunities.


Heumann

No, "cutting slack" is the right word. I think not giving opportunities and cutting slack--they're different--but I think they are both things that can happen.


49

When I taught the eighth grade class, the first year that I taught, I was in special ed classes, the same ones that I had gone to school in. Now, when I went back to teach there, kids no longer were kept there until they were twenty-one years old. That had ended. But I remember saying to the kids that it did feel like the teachers were, again, not cutting them slack, but not doing them justice, because nobody was requiring that they teach to the same standard that was being taught for nondisabled kids. I very much remember talking to the disabled kids in the eighth grade and saying to them, "You know, you're not doing yourself a favor by not pushing yourself and challenging yourself and working as hard as you can, because when you get out of this program and go into--" because then everybody went to regular high school, and so--


Young

The rules changed.


Heumann

The rules changed very dramatically.


Expectations after high school

Young

Did you have strong aspirations about what you wanted to do in high school when you grew up?


Heumann

No.


Young

Do you think that was different than your nondisabled peers?


Heumann

Ah--


Young

Were people not encouraging you as much?


Heumann

You know, when I think about my friends, I mean, when I was growing up in the sixties, I went to college. From my close friends in my neighborhood--my friends Arlene and Mary--they didn't go to college and they weren't disabled. There were a couple of kids in my high school that I was closer friends with who were in the special ed program, but one had a heart condition, and one--. No one ever exactly understood why Mimi--Mary Coyle her name was--why Mimi was in the special ed program except that somebody might have felt that she was a bit fragile. My mom would always say, "Why is Mimi in this program?" But she was a good friend of mine. She used to do Irish dancing and she came from a really big family. I went to a few practices with her and her friends. What was your question again?


Young

What kinds of messages you were getting about career opportunities--


Heumann

Oh, career. So, yes, so--


Young

--that maybe your nondisabled peers were thinking about it more because they were encouraged, whereas you were not.



50
Heumann

I mean, actually, really, as I look at myself and my nondisabled peers, as I was saying, my male cousins, all of them went on to college, but my female cousins didn't all go on to college, and in my neighborhood not all of my girlfriends went on to college. So, on a certain level, I was going on to college more than my peers were in part because the message that I was getting is, "Don't expect to be able to get married and have a husband who is going to take care of you. You need to be able to support yourself, and you aren't going to be able to support yourself on a high school degree. So you have to go to college." That was just something that always was expected. I mean, I think education was something that was very important to my parents. Their job was to work and take of us, and our job was to go to school and get good grades. I remember in the neighborhood kids would get money if they did good on their report cards. We never got money on our report cards. It was expected that we get good grades. If we didn't get good grades, it was like, "Why didn't you get a good grade?" The teacher was always right unless you could prove the teacher was wrong. You had to work really hard to prove that the teacher was wrong. But that was true.



51

IV. Reflections on the Disability Experience

Encouragement to attend college


[Interview 4: May 8, 1998] [Tape 4, Side B]
Young

Judy, when we were talking on Monday, toward the end you mentioned that people--it may have been your parents--communicated to you the idea that you shouldn't expect to get married and have somebody to take care of you, that you were going to need to get a decent job to take care of yourself.


Heumann

I don't know if it was expected that I shouldn't. It was changing, but it hadn't changed yet when we were in high school. Two of my closest friends didn't go to college. They graduated from high school, and they got married pretty much after high school. One of them never had a paid job to this day; they volunteer, and the other one didn't start working until she got divorced. So my parents' comments were, "You can't assume that you're going to--"


Young

Right.


Heumann

I know that it was related to disability, but I've never even asked my mom about it, even if she'd remember it. But it also probably really had to do with the fact that my mother also wanted me to go to college. So I don't know. But definitely it was somewhat disability related.


Young

Did they say that explicitly?


Heumann

It was--


Young

I mean not that it was disability--


Heumann

What they said explicitly was that I shouldn't assume that somebody else was going to be able to financially take care of me, and that I needed to be able to pursue employment that would pay me sufficient money to be able to cover my costs, which were more extreme


52
than other people's. So you had to go to college in order to be able to get a degree that could earn you a salary that was enough.


Young

Did you take offense at that?


Heumann

No, I didn't take offense at it. No, because there certainly were women around me that were going to college. I did have friends who were going to college, and the guys were all going to college, all of them. All of the guys went on to higher education of one sort or another. It was just that the women, the young women didn't do it as frequently as the men at that time.


Attempts at driving

Young

We talked a bit about the independence associated with getting a power chair. How about driving? Did you ever start to drive?


Heumann

A couple times, but I'm not strong enough to drive. I took a driving lesson or two when I was in college or right out of college, but my arms are really weak, so I wasn't able to turn the wheel. I couldn't turn the wheel to steer it and hold my balance. Then when I went to Berkeley, to graduate school, Rehab [Department of Rehabilitation] had sent me to Texas to be evaluated. That was in like 1978 or something.


Young

Was that TIRR [Texas Institute of Rehabilitation and Research] in Texas, in Houston?


Heumann

I believe it was at Baylor, not TIRR. They told me that what I needed hadn't been designed yet and that probably in about ten years what I needed would be designed, which is, in fact, about when it came out. I needed a potentiometer.


Young

What is that?


Heumann

That's like the joystick on a wheelchair.


Young

The hand controls?


Heumann

Exactly, right. Instead of driving with a steering wheel, I would use a joystick.


Young

Is it more the hands or the upper arms that's the issue?


Heumann

Both.


Young

Okay.


Heumann

So, now they've got the technology, but these vehicles are about $50,000. So they're outrageously expensive. They'll train one other person to drive the vehicle. They're very technical. Quite frankly, I don't know if I have the physical stamina to drive. They design the car for you, and once the car is designed for you, it's your car. So, at this point, no.



53
Young

If something goes wrong, you can't exactly sell it.


Heumann

Exactly. My husband drives, so the truth is, right now, he does the driving.


Young

How was that over the years? I mean, through college, and graduate school, and Berkeley?


Heumann

Not driving?


Young

Yes.


Heumann

That was just another thing I couldn't do. I mean, it's a problem to the extent that I can't get in and out of people's cars. I mean, it's another that you can't do what a lot of people do. In Berkeley, it wasn't as bad, because I had a lot of friends who had vans. Before I knew my husband, well, I had a van since 1979, so either my roommates or my friends would drive the van, and then I had friends who had vans.


Young

Oh, so you had your own van with a lift?


Heumann

Oh, yes. I just didn't drive it.


Young

Oh, okay.


Heumann

I mean, it's not the same as being able to get into your own car and driving.


Young

But it enables you to get around.


Heumann

Oh, for sure, yes. I've always lived in cities, so the problem was really, you know, when I was growing up there was no BART [Bay Area Rapid Transit], no metro, no trains that were accessible, the buses weren't accessible. But now, at least in the urban areas, there's a lot more accessible transportation, plus the fact that I have a van.


Young

You mentioned that in high school you weren't able to participate in a lot of the extracurricular activities because of the bussing situation to go home after school. How about working? Did you work during high school, during the summers? How did you spend your summers?


Jobs while attending school

Heumann

In summers I went to camp. I didn't work in high school.


Young

We talked about that for like three or six or eight weeks, so what about the rest of the time?


Heumann

I was in camp most of the summer, and when I wasn't in camp I was at home.


Young

Oh, so you could do multiple sessions of those three or six weeks?



54
Heumann

Yes. When I was in high school I went to Camp Jened, and that was for four weeks. I think one summer I went for eight weeks, one summer I went for four weeks, and then I went to a day camp kind of a program that I went to for a bunch of weeks. I was always busy in the summer. My girlfriends didn't work.


Young

Oh, really? Okay. Maybe I'm projecting back a perspective of my high school days.


Heumann

Yes, no. My brothers worked when they weren't in camp. They worked for my father. I think they were in college then when they worked for other family members.

I worked in college every summer, and I worked in college. When I was in college I worked also some years. I did work study and one year I worked in the president's office, one year I worked for the disabled students program, two summers I worked at a senior center as a social worker--you know, like a summer social worker intern for two summers--one summer I worked at the camp, and I don't remember what I did the fourth summer.


Young

We'll talk about college more fully in a moment. Anything else about high school that you think is important to add?


Difficult transitions from segregated to integrated classrooms

Heumann

I've talked to people about these transitions, that it was difficult for me to transition from a segregated school environment into an integrated school environment. I think that there are these assumptions that you can just move people from one environment to another without talking about it, without looking at what's going on, and I think that's a mistake. There are differences between segregated and integrated environments, and while the integrated environment is a better environment--when people have been separated--there are messages that are being given, that were given to me as a disabled person.

Who was I talking to today? I was talking to somebody on the phone today. Who was I talking to? Oh, a parent. They were talking about how these kids were being included in school, but during lunch period and social times, the nondisabled kids didn't socialize with them. So they had somebody who was working on helping the two get together--the disabled and nondisabled people get together.

Well, you know, that was something that went on in those days also. Only, there wasn't anybody there to bring people together, and I always felt it. I mean, I had some nondisabled friends in school, but, as a rule, I didn't feel like I really belonged there, because in a certain way, I didn't. I didn't belong in the segregated environment. You know, it's not to say that if you don't belong one place, you do belong to some place else, at all. But I certainly didn't belong in the segregated environment. But I think going from very small classes to large classes--everyone had difficulty moving from elementary school and middle school to high school--those are traumatic transitions for anyone.



55

Health professionals and socialization needs

Heumann

But I also think not having a motorized wheelchair was a really big problem. I think if I would have had a motorized wheelchair it would have made a really big difference, because I still wouldn't have been able to do things like go to the bathroom by myself, but I would have been able to get around in the hallways by myself, and I think that would have just made 100 percent difference.


Young

It lets you be a lot more assertive, in control.


Heumann

In charge of myself, right. But that was the other thing, that, you know, health professionals and social workers and others never looked at. You needed to be able to walk because of whatever walking is supposed to bring you. They didn't look at what happened if you couldn't walk and you couldn't also independently get around.

There wasn't any real thinking about what facilitates good socialization and what doesn't, and I think that's something that I try to talk to parents about a lot. It's, you know, look at what are age-appropriate activities and help kids, however they do it, to be able to participate in age-appropriate activities as independently as possible. But, at the very least, to be in charge.

So it's not like independence at the cost of, because you go to these situations where it takes somebody so long to do something independently, that that's no longer appropriate, either. You know, if it takes you five minutes to do something that it takes somebody else four minutes to do, well, that's not a big deal. Maybe. Unless you're exerting a lot more energy than that person. But if it takes you thirty minutes to do something that it takes somebody five minutes to do, that's a very big deal. You can make the choice, ultimately, to do it, but--


Young

Independence can be its own form of dependence.


Heumann

Exactly. Yes, absolutely.


High school graduation fiasco

Heumann

I think for me, graduating high school just kind of allowed what I was feeling to be graphically displayed. We were graduating at Brooklyn College, which, of course, had a stage that wasn't accessible.


Young

Did they always have it at Brooklyn College?


Heumann

I don't know. That year they were held at Brooklyn College. I don't think they were usually held at the high school because their classes were too big. I don't know. Sixteen hundred kids in my class--a large class. Maybe it wasn't that large, but it was a large class. However many kids there were, we graduated at Brooklyn College.


56

I was getting an award, and everyone who was getting an award sat on stage. We had rehearsed it at the high school, and when we got to the college, my father went to take me up on stage--tipped my wheelchair back and pulled my chair up so that I--not to stand on stage, but to get me on stage--and the principal came over and said I couldn't stand on stage.


Young

Because?


Heumann

Because he didn't want me to be carried up the steps. I was mortified, and I wanted to leave. I was so furious that I started to cry. First of all, I was so completely surprised by it. I mean, on the one hand I was completely surprised by it, and the other thing, I think it was waiting for something to go on for four years. You know, you feel uncomfortable the whole time that you're here, and on graduation day they tell you, "You're absolutely right. You should have been feeling uncomfortable for four years. We don't want your butt around here." You know?

So I told my father that I wanted to go home. My father said, "Forget it." I guess we had this thing with the principal, so the principal let me sit on stage.


Young

This is the day of graduation?


Heumann

This is the night of graduation.


Young

Right.


Heumann

This is like people coming into the whole auditorium.


Young

It's not like a dress rehearsal.


Heumann

No, we did the dress rehearsal at the high school, and there was no problem. So the principal made me sit in the back of the stage, last row, and wouldn't let me come to the front when the award was given.


Young

Because he didn't want people to see you in a wheelchair? What was the deal?


Heumann

How do I know? Believe me, I didn't interview the guy afterwards, you know? That was it. I graduated high school, finished. But that was my last day in high school.


Young

That kind of captures it.


Heumann

Yes. It really did.


Empowerment gained by motorized wheelchair

Young

I don't suspect you identify much with your high school friends.



57
Heumann

You know, there are things I enjoyed about high school, but I actually don't really have any friends from high school. Even the people I knew who were disabled. I know one person from the high school who I actually went to college with, and that's the reason why I still know her. But I don't have a single friend from high school. That's a pretty strong statement. Because I have friends from elementary school and friends from college.


Young

What were some of the best highlights of high school? I mean, it's pretty clear that there were some pretty bad experiences.


Heumann

Oh, I was in this honors English class. I liked it because it was a smaller class. There was more discussion. I liked my history classes. I was in Sing for two years; that was okay.


Young

That was the name of a choir?


Heumann

Oh, the freshman class, sophomore class, junior class, and senior class did a production every year. It was called the Sing. But I knew that I would never get cast in any role--it was very clear--because I was in a wheelchair.

I think, really, the fact that I didn't feel empowered--I mean, I felt empowered at certain times--but having to be pushed or pushing myself very slowly and awkwardly always made me feel different. Now, I don't go any place, as a rule, I mean, I never travel if I can't take my motorized chair. Any place I go, I take my motorized chair. I don't care where it is, I take it. I take my manual chair if I go to another country, and I'm going some place where there are a lot of steps, I get out of my motorized wheelchair and go into the manual chair, but I'll never leave my motorized chair at home.


Young

A lot hangs on the chair. That's a pretty powerful statement about the importance of technology.


Heumann

Oh, yes. Yes, the chair's the most important thing for me. Yes. It's kind of my personality, you know?


Young

How does it shape your personality?


Heumann

Because I'm a very active person, and I move a lot. I feel a lot of times like I'm still making up for the first twenty-one years of my life where I couldn't easily move around.

People who speak on the phone, some of them stand in one place. They'll stand on their left foot, they'll stand on their right foot, they'll go back and forth or lean against a wall. Some of them will sit down on the floor. Some people will sit on a chair. Some people will pace. I'm a total pacer. [laughter] I'm back and forth. My husband will come over sometimes and shut the chair off and say, "Stop moving. You're making me crazy!" [laughter] I won't even know that I've been moving. But I like the feeling of movement. In my office and every place, I like to be doing, so the motorized chair lets me do a lot of stuff.


Young

That makes a ton of sense to me. I'm smiling because I told you that I just started to use a chair. I'm always the kind of person who, if I'm standing, is looking for a place to sit or a


58
place to lean. But, in the chair, [laughter] you know, I was down in Denver, and I found myself just moving, just little turns.


Heumann

Exactly.


Young

Just to be in motion. There's something really neat about that, as opposed to feeling like you always either want to or need to be still, to have that freedom to move is really liberating.


Crutches and braces for therapeutic exercise versus walking

Heumann

Well, I used to use crutches and braces. I mean, I used them until I was twenty-one. But I never was independent, and I was always afraid of falling.


Young

There's a huge stamina issue, I would think, too.


Heumann

Well, I mean, the stamina was different because my arms are not strong, so I used to have crutches that went under my arms and braces that came up to my chest, and my knees were locked and my hips were locked. So I would basically be able to do little steps, but it would take me about half an hour. It would take me a long time. I couldn't walk up steps, I couldn't walk down steps. I mean, I couldn't walk up inclines, really. I couldn't break my fall. So it was not really an issue of my getting really tired, it was just that it took me so very long. I never could walk across the street by myself unless there were no cars coming for five minutes, ten minutes. I would never get across the street. A big street would take me thirty minutes to get across the street. It was very impractical.

I think I've said this before, but I think it's so unfortunate that there wasn't an effective mix of standing and walking for legitimate reasons, not walking for a functional purpose, but for weight bearing and for exercising. So when I finally had the opportunity not to wear my braces anymore--I don't know, did I tell you this--then I had my spinal fusion.


Young

You told me about the issue of weight bearing, that that presents a problem.


Heumann

After I had my spinal fusion, when I went back to get braces, the doctor prescribed the wrong braces. Did I tell you this?


Young

You referred to it.


Heumann

They prescribed braces that were only to my waist. So when they went to order the braces, I said, "Those braces aren't going to work." They said, "That's what the doctor ordered." I said, "They did a spinal fusion. They didn't do a trunk fusion, and I don't have any stomach muscles. So it doesn't make any sense to me that they're giving me a brace to my hip."


Young

Was it a new doctor that you hadn't seen?


Heumann

It was the doctor who did my spinal fusion.



59
Young

So he had no experience?


Heumann

But he wasn't my doctor before. Exactly. I thought, "Well, I've done my best. I've been as honest as I could about what I need, and I know when they give me these braces that they're not going to work." But, you know, my parents really wanted me to have those braces. So we got the braces. I think I wore them three times.


Young

They just didn't work?


Heumann

I couldn't walk. I couldn't even stand, because, while they'd fused my back, I had no upper trunk muscles. I had to have something to hold me up straight, you know. So I put the braces and the crutches in the closet and I never walked again. That was that.


Young

How do you feel about that?


Heumann

Well, I do wish that I had braces today.


Young

Is that still an option?


Heumann

Well, sure. I mean, I could go back and try to get a set of braces, but it's kind of ridiculously impractical. Again, it wouldn't be for the purpose of walking, it would be for the purpose of standing and bearing weight and just getting your organs in place.


Young

That's not possible without the braces and--with a walker or other types of things?


Heumann

No, I can't stand at all. A walker is nothing for me. I was never good with a walker. They have got these standing tables and stuff, but I haven't borne weight for so long that I don't even know what I would have to do to start doing that.


Young

They're actually doing some pretty wild things with chairs these days. I don't know if you've seen these golfing chairs where it's a motorized chair, and you're sitting and you move along, but when you want--


Heumann

You can stand up.


Young

--it will raise you up and stand you up.


Heumann

Yes, right.


Young

So you can swing your golf ball and then get back down.


Heumann

Right. Those are the people who can bear weight. I mean, I don't have the time, but it is something that I'd like to do. Because first I'd have to see whether or not bearing weight would be a problem at this point. But I like standing. I've never felt badly about standing. But it was just this extreme--you have to do this. This is the way to do it. You have to be able to walk. Very ridiculous.


Young

Did you feel much different when you were standing?


Heumann

Versus being in a motorized chair?



60
Young

Or a manual chair.


Heumann

Well, sometimes I would feel very stuck because I couldn't walk quickly by myself. Or sometimes it would just feel good. In many ways, it depended on the situation.


Young

How about the identity level, in terms of--


Heumann

Standing--


Young

Did you feel like a different person?


Heumann

From an identity perspective? No, I didn't feel like a different person, because, again, you know, I couldn't walk well by myself. I couldn't pass standing, you know? You saw my braces, you saw my crutches. I couldn't just pick up and go walk down the street with you. So, actually, being in the wheelchair was more independent, because even if I couldn't push myself, somebody could push me. So the wheelchair was always more practical.


Young

Pushing you while you were standing wasn't too practical. [laughter]


To be or not be disabled

Heumann

That's right. Although, when I was younger, my friends knew how to walk with me with my braces.


Young

On the NPR [National Public Radio] program on Monday--this is getting a little off-subject--I heard a caller refer to how you had said that if you were able to have some miracle pill that would enable you to walk--


Heumann

To be nondisabled.


Young

To be nondisabled--that you wouldn't do so. That's kind of a part of the identity issue that I'm thinking of, because part of what you were saying about the chair, and from my own experience, it goes far beyond a functional thing. I mean, it becomes a part of who you are. Will you say a little bit more about your feelings about that?


Heumann

People think that what disabled people want to be is nondisabled, or what I want to be is nondisabled, and the truth of the matter is that if somebody came up to me today and said, "I absolutely have something that unequivocally would enable you to walk, would you take it?" I don't know what I'd say.

But I don't ever say that out loud to people, because the message there would be the wrong message. The message is, "I don't want to be you." You know, "you" meaning a nondisabled person. But do I want to be able to have a life which is not hampered by my disability? You know, I definitely believe that it's the social environment, et cetera, et cetera, but if somebody came to me and said tomorrow, "I definitely can give you this so you can go out and drive. You don't need an attendant anymore. You don't need to do all


61
these things. You can go buy a house and you don't need to worry about whether you're living near a metro, because you can drive," and all that stuff. That's, of course, what I thought on Monday when this guy said this to me, but I wasn't going to say that.

It's totally the wrong message to say to people, because the truth is it is very possible to create a society where being in a wheelchair and needing the level of help that I need is practical and feasible, but it's the system around that makes it so difficult. So, when you get to be fifty years old and you've been doing this as long as I've been doing it, I really thought, "Well--"


Viewpoint on Christopher Reeve

Heumann

I mean, the Christopher Reeve thing--you know, I feel badly for the guy. I don't say that publicly either.


Young

Why would you feel badly for him?


Heumann

The guy is very, very seriously disabled. He is a C1 quad. He's like living on a broken rubber band. I mean, that little bit that's left could pop at any minute. He was a completely independent guy who did everything by himself.


Young

Superman!


Heumann

Right. Well, he was a person. He wasn't Superman. He was just an average person. Now he can do very little for himself. What I feel badly about for him is that I don't believe a trillion billion dollars that guy is ever going to walk again. His wife knows that. Did you see that piece about him last week on Friday with Barbara Walters?


Young

Yes.


Heumann

First of all, I think the good things that he's doing--



[Tape 5, Side A]
Heumann

--and so many relationships break up when someone acquires that level of injury, and who knows what would have happened if they didn't have the money they had. But they seem to be a pretty strong couple. She seems to be pretty grounded. She's not talking about him walking. She's talking about him getting one arm and getting off a respirator, which, in and of itself, is probably not going to happen, but it's a lot more in the realm of practical and feasible than getting him up in those things and getting him moving. Except for that, I also think the guy, on a very real other level, has gone on with his life.


Young

He's now directing. It's phenomenal.


Heumann

Yes, it's great. I'm not in the camp of being critical of who he is. I mean, I understand very much that we don't want the message out there that my life is a tragedy if I can't walk.



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Young

And that society has no responsibility but to cure the people so we don't have to deal with them.


Heumann

Exactly. I don't think he's exactly saying that either. I think he's saying, "My life's pretty tough right now, and if I could walk, my life wouldn't be like this anymore." That's not a lie, you know? What can you say? The guy probably has more people helping him than he needs to have helping him because he's got the money that he's got, but the reality is that he needs a lot of help, and it's pretty expensive. If he wasn't who he is, he probably would be dead. You know, so there are all those real things that go on all the time.


Young

I wonder how many C1 quads there are.


Heumann

Oh, there are others. Definitely there are others out there.


Young

I was just thinking about what you said, that it would take a lot of dollars to sustain that.


Heumann

Yes, but he's certainly living a decent life. I mean, he had enough money to renovate his house. He lives in a beautiful house in a beautiful place. But I do think that the other message there is that he is directing, he is out there, he is flying, he is getting around. He is showing people that here you have somebody who has got a very significant disability who really is breaking a lot of fantasies about what people can do.

So I don't think any of this is in a neat package. We'd like everything to be neatly packaged. I don't think there is any such thing as a neat package.

He could be out there just raising money for the cure and not doing anything. That would be a terrible message, but, you know, he's basically, "Well, I'm waiting for the cure, but while I'm waiting, I'm getting on with my life." So I think in the next couple years he's going to have to make a decision that the cure isn't going to happen, and his life is going to be different, and he's going to continue to go out there and direct and maybe have another kid.

That I didn't like. That is something that I didn't like on the program last Friday where he said he didn't want to have another kid because he couldn't do the things for his kid. That bothered me. That bothered me more than the curing.


Young

Why did that strike such a strong chord?


Heumann

Because, on the one hand, well, this is great that he's a man and he wants to take these kinds of responsibilities and he feels like he's physically not going to be able to do it so he doesn't want that to happen. On the other hand, he has many people working for him who can pick the kid up and put the kid on his lap, and he can take his share of responsibility. His wife can go out. He can use the attendants that he's got to direct them on what to do that he can't physically do himself. So, that did bother me more than this thing on wanting to be cured. But, I don't know.



63

Society versus the individual

Young

I want to follow up a little bit on this issue of society versus the individual. You talked about how you could imagine a society where being in a wheelchair isn't a problem, that it's not the disability that's hampering you, it's the society. Have your ideas about that changed over time? At what point did you come to that kind of perspective?


Heumann

I always felt that.


Young

All the way back into high school and college.


Heumann

To me, all this has been very logical. The types of things that I need--ramps--they're not really high, high tech--a good motorized wheelchair that can be repaired, good seating system, and the availability to have people around me to help me do the things that I need to do that I can't do by myself, an accessible house, a roll-in shower, things that I still don't have. But it's not because they're not obtainable. I mean, as long as I can remember, I think, or as long as I've been thinking about it, these are artificial, human-made barriers that don't get removed because we don't have, yet, the political muscle to allow people to understand, one, that this would be good for us, and, two, it would be good for them as nondisabled people.

I don't know if it will ever change in our lifetime, even in your lifetime, which will be longer than my lifetime. I wonder at what point nondisabled people are going to say, "Okay, I'm seventy-five years old, but I still want to be able to live in my own home. I'm going to need assistance, but I want to be able to get it in my home. I want an environment that I'm living in which I can use. I don't want to go off to a nursing home." Or, "I don't want to go off to a senior living community," you know, "where I don't know anybody, and there's no reason for me to have to be able to do that."


Young

We'll come back to that on a couple of occasions.


Heumann

Okay.


Disability overshadows all aspects of personal life

Young

A couple of final things before we head on to college. I feel like we'll actually get into the twenties.

You think about issues, parts of identity formation, race, class, gender, ethnicity, age--where do you see disability fitting into these other categories? Is it kind of one of equal footing among all of those, or does disability stand forward?


Heumann

Do you mean for me personally in my life?


Young

Yes.



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Heumann

Oh, I thought you were going to ask me how it fits into each one of those categories from other people's perspectives.

In my life, disability kind of overshadows almost everything almost all the time.


Young

But?


Heumann

Not all the time.


Young

It sounded like a "but" was coming.


Heumann

No, not all the time, almost all the time. You never really forget that you have a disability. Well, people would say to me, "Oh, I didn't even remember you were in a wheelchair." That's like the biggest crock. [laughs] Because, since I can't forget that I'm in a wheelchair, how can they forget I'm in a wheelchair? I mean, I can't forget that I'm in a wheelchair because there isn't a complete day that can go by where I can, from the time I wake up till the time I go to bed at night, do everything in a free and easy way. Because if I want to be able to have the world as my opportunity, to be able to go out and about and do whatever I want, I can't just pick up and say, "Oh, let's just open the map and go there." I have to think, "Okay, where is there? Is it accessible? Is the bathroom accessible? Do I need somebody to come with me?"

Also, I think, the other reality is that this job has been helpful on a certain level, because I have spent the most time I ever have in my entire life with nondisabled people--outside of before I was five years old--or nine years old when I went to special ed classes, I guess, before I was nine. But, no, then there was high school, which was a very uncomfortable period. I guess I could relate the beginning of this job to the feelings that I had when I was in high school, [laughs] because I knew I needed to be there, it was uncomfortable being there, and I knew that I had to complete it. When I first was in this job, I felt uncomfortable, and I knew the people working with me felt uncomfortable.


Young

Because they were all career people who--


Heumann

No, they weren't all career people. The people that I spent more time with in the beginning were not career, actually, they were political, but they were all nondisabled. So it's like you could just tell.


Need for accessibility features at RSA

Heumann

When I first came into this job, the disability stuff was there immediately--bathrooms not being accessible and my saying they had to be. Some of the things that went on. But when I first came here, the bathroom in the building that I was in was very narrow, and the only way that I could go to the bathroom was my attendant had to literally put one foot on the toilet, because it was so narrow. So they were going to make one of the bathrooms accessible for me; they weren't going to make the men's bathroom accessible, because I didn't need the men's bathroom. I said, "Forget it. We have to make the bathrooms accessible."


65

Then I was told that the bathroom that was "accessible," met GSA [General Services Administration] standards for the time that the building had been built. I said that I didn't care if it met GSA standards, it didn't meet today's standards. So I remember making a phone call to the Architectural Barriers Board [Architecture and Transportation Barriers Compliance Board], and asking them if they would send somebody over to look at these bathrooms, and GSA calling up, being furious that I had invited another agency to come in and look at this.

I got called in by the deputy chief of staff who was upset.


Young

From the White House?


Heumann

No, in the Department of Ed. I should have kept a diary. I know I'll rue the day I didn't. But I wound up having a conversation with this person. She was African American. Today she is the chief of staff. She basically had this discussion with me which clearly indicated that she not only knew nothing about disability, but she really knew nothing about disability, and she was asking me some of the most inane questions, like how did I move this, how did I move that. I just remember sitting there and going, "Okay, you have to listen to this, and you have to respond to it, but I can't believe I'm doing this." It was just so wacko.

But I learned in the very beginning of the job that you just hold your ground, and I held my ground, and eventually the point was made that this building that we were in not only had to have a bathroom for me that had to meet current standards, but there had to be one for men and one for women, and there had to be one on every floor. And there had to be an electric door at each one of those bathrooms so that people could get in and out. So that eventually happened.


Young

How long did it take?


Heumann

Not too long. It was probably within six months to a year that that happened.


Young

That's not bad.


Heumann

They had carpeting in my office that had just been laid down before the previous director left.


Young

Nice fluffy carpet?


Heumann

It wasn't fluffy, but it didn't meet code, and it was hard for anybody in a wheelchair to get over it, so I told them to rip it out. They told me it was new. I said I didn't care. Get it out. So they got it out.


Relationship with Assistant Secretaries, U.S. Department of Education

Heumann

So I began to learn, "You are the assistant secretary, you have authority over here. Use it." So that's the way some of the changes have been made over there. But what continued to


66
go on was that I felt people were--people had made friends at this level--you know, the assistant secretaries, and I feel friendly with all of the people.


Young

Wait. You lost me a bit. People make friends?


Heumann

The assistant secretaries.


Young

Oh, the assistant secretaries make friends together.


Heumann

Yes. Well, we're not all social buddies, but there are social relationships, I think, that have developed.


Young

I didn't know if you were talking about other people outside.


Heumann

No, in the department. No. These things that are going on are not just disability/ nondisability, but also male/female, because some of the men have known each other for longer periods of time. I didn't know anybody when I came into this job. I didn't know any of the political people. Some of the other political people didn't either. I think some of the political people don't socialize with the other political people, but we're all friendly towards each other, and some of them do socialize.


Prejudice and lack of trust

Heumann

Then I had another experience in this job. Once a month, the department holds satellite town hall meetings where we have the secretary, and there's a topic, and there's an audience, and they do downlinks from 150, 200, 300 downlinks around the country. The chamber of commerce donates their space.


Young

I didn't go to the first one. I might not have gone to the first one or two. Then I went. I thought, "I've really got to go." So I went to one, to be in the audience. When I got there, there was a flight of stairs. The entrance that I had to go into was on the side through the garbage entrance. So I was furious. I was so pissed.

Nobody had checked that out, evidently.


Heumann

So that Monday morning at our senior staff meeting I raised the issue. I said, "We need to move this. We can't do this. It's not appropriate. It's not appropriate for me to have to go through a garbage entrance. It's not appropriate for any other disabled person to have to go through a garbage entrance."

I was told that this was free space and we weren't going to be able to move it and that they would deal with it. So they got this very big ramp, and every Tuesday I'm sure, still--I haven't been there in ages--I was there in January. No, we did one in January. They moved it to some place else for this particular show.

But, at any rate, this was still a couple years ago, it was the first year I was there--1993. There was an article in the newspaper. Some disabled people--I don't know who they


67
were--picketed the chamber of commerce for lack of access. There was a picture and a heading underneath it. I remember either seeing it or somebody telling me about it and then looking at it. Then, that same week, the chief of staff asks me to come in to talk with him, and he shows me this picture. He says to me, "I don't believe in coincidences." I thought, "What is he saying?"


Young

He thought you set it up?


Heumann

I mean, it was like one of these, "I want to have a party at my house, and I don't want you to come" kind of things, that I'm trying to fix it. It was the exact same kind of a feeling.

I'm, like, "What?"

"I don't believe in coincidences."

I said, "You think I did this?" I said, "I don't even know who these people are." Which is the god's honest truth. I have no idea who these people were.

It was this issue of was I a team player. In point of fact, I knew that with this job, and I know that with this job there are certain things that I want to accomplish, and if I'm not trusted by the people that I have to work with, I'm not going to be able to accomplish it. I'm not going to compromise my principles on what I want to have accomplished, so I will learn how to play their game. If it means not saying what I think about somebody not inviting me to tell me they're having a party in their inaccessible house, okay.

But I remember saying to this guy--we had a whole discussion around it--and I said in the end, "Well, I hope you believe in coincidences."

But I remember those three. Those are at least three of the incidences that were so stark and, to me, really speak of prejudice and lack of trust. They were also in the beginning, in the first year, I think. Things slowly have gotten better as people have gotten to know me more and to trust me more.


Disability agenda misunderstood

Heumann

But the people who came into the administration all were people who had an agenda. They were advocates of one sort or another. Certainly in the department, I was brought in for my qualifications. I was also brought in because I was a disabled person with the qualifications. You know, there were a number of African Americans and Latin Americans. The secretary was very conscious because the president said he wanted a diverse work force, which was great. But I felt--and I've talked to people like Bob Williams, who have said the same thing--that all of these people, within their own constituency, would be considered to be an advocate. But when the word "advocate" was used for me and the word "advocate" was used for Bob, it was used in a way that meant that you were a different type of advocate, and one that didn't necessarily belong to the same team. So you had five advocates in a cluster and an advocate over here.



68
Young

Because you're not a part of the system?


Heumann

Because I--no--I wasn't a part of their group. I wasn't trusted. They didn't know me. They saw us disabled people as having a different agenda. We played to a different drummer. I think the analogy would be Kennedy running for president in 1960 and being controlled by the Pope. They couldn't say we were controlled by a pope, right? But, because they didn't get our agenda, more importantly, they didn't agree with our agenda. I think they basically agreed with the agenda of the other minorities within the group, but they didn't understand our agenda, and what they understood they didn't necessarily agree with.


Young

So gender and race and class issues are kind of all sort of equally respected but somehow disability--


Heumann

Class wasn't an issue because there were no poor people in this group. Class was not an issue.


Young

So race and gender at least.


Heumann

Well, race and gender--


Young

Disability was kind of on the outside.


Heumann

They were all middle- and upper-middle-class people or more. So, while people had different racial backgrounds, race wasn't an issue because they weren't poor blacks or poor Latinos. One of the guys in the group was an African American guy who actually had been poor when he was younger and actually had had all kinds of problems until he kind of got it together. He's not there anymore, although he reaches out and does some very good work.

I don't have disparaging feelings about the people, but it was very clear in the beginning, this level of discomfort and distrust.


Nondisabled people's discomfort

Heumann

It reminded me of when I worked on a campaign in California--and friends of mine--you know, we clearly felt like we weren't wanted. Or, they were glad that we were there, but they didn't really know how to be with us. It was like a basic not knowing how to be. You know, it's not like you can just be. So the campaign was finished--


Young

Whose campaign was this?


Heumann

I don't even remember. Just some campaign. Whoever's campaign it was, we had won. So we had gone to somebody's backyard for a party. We were standing--I was sitting, and everybody else was standing in a little group--and people started talking about going to the movies that night and nobody asked me to go. It was like, "Oh, would you like to go to a movie tonight? Would you like to go to a movie tonight? Oh, what kind of movie would you like to go to?" I was, like, there. It goes here and here and here, and I just sat


69
there thinking, "How totally bizarre that these people have now set up--" They were all talking about how great it was that we had won the election and blah, blah, blah, and now they were moving on to the next activity.

I actually went home and called Kitty Cone up. I said, "Kitty, am I a Martian?" [laughter]

[phone interruption]


Heumann

But, no, this feeling of being a Martian. One of the things that I started to do in this job is I have accepted the fact that people are uncomfortable with me sometimes, and I have begun to make fun of people about it in a very New York, sarcastic, sardonic way.

So, one day, we were at another one of these senior staff meetings. Every Monday morning is a senior staff meeting. So every Monday morning I'm the only disabled person sitting around the main table. Sometimes there will be another disabled person in the room who's on my staff, one of my politicals. Now, actually, there's a disabled person who's working in another office, and he comes to these meetings sometimes, so he's the only other person in a wheelchair in the secretary's building who is at a higher level, not political, though.

So, the discussion was about education. People were talking about things that they were doing. This one guy who clearly is uncomfortable around me made some kind of a comment about, "If this happens, we'll be cut off at the knees."

I said out loud, "Oh, and then you'll send them over to us for services." [laughter]

Well, the room was like [gasps].


Young

A little bit too dark of humor.


Heumann

The deputy secretary, who also was not comfortable with me, said, "I'm really sorry. I'm really sorry. He didn't mean it."

I was laughing. I leaned over, this guy was sitting next to me who was another assistant secretary, a Hispanic Latino guy, and said, "You know, I was only joking." So I said, "You guys, it's a joke. It's a joke. Just relax. I'm only joking with you."

I don't think that anybody would remember that, but I think it was kind of important. When I keep feeling this, that they don't exactly know what to do, and they still are playing cutesy about my wheelchair and the speed of my wheelchair. I hate when people say to me, when you're with another person in a wheelchair, "Are you having a race?" I hate that. That will even happen in the building.


Young

Patronizing.


Heumann

Yes. Well, you know, it's people's way of saying something friendly. Because, you know, they're really retarded--I mean, [laughs] in the real sense of what the word should mean--they just don't know how to do the basics, and it just really does surprise me, still. I mean, doing a study on this, I think there would be some sociological value in it.


70

But I think, for me--however we got into this discussion--for me, this job has really taught me different things, because I had to stay in it. It was important for me to be able to do my job, and in order for me to do my job, I'm a very strong networker. I have to be able to work with people outside of my office. So I had to be able to get people to begin to trust me without compromising. Just trying to find that balance. It just takes time. I mean, everybody that I was working with at that level, they're all in their forties and fifties. I mean, these are people who were civil rights leaders, activists, union leaders. So the problem is pretty overwhelming.


Language issues and disability

Young

We are a little far afield from college, but you've mentioned a whole bunch of themes.


Heumann

No, but it's all relevant. I can get back to college.


Young

I want to touch on some of these themes now, but I'm going to come back to them later, so don't accuse me of saying, "You've already done this."


Heumann

I won't.


Young

Because they are big themes that we come to on other occasions.

I'll ask the most recent one you touched on, this issue of language, the joke of being cut off at the knees, all sorts of idiomatic expressions. You know, saying to a blind person, "I'll see you later." Or, one that always bugs me, you hear the traffic reports and there is a "disabled" vehicle.


Heumann

I hate that.


Young

The implication is that it is utterly incapacitated and an obstruction.


Heumann

And the people--


Young

People always use the expression, "This is going to paralyze" this or that, or you talked earlier about how somebody said something to the effect of "I didn't even notice your wheelchair." You'll hear oftentimes--I've heard it oftentimes--"Well, I've never thought of you as disabled." What do you think about some of these language issues associated with disability?


Heumann

I think I separate the "I didn't think of you as disabled" from the use of the words of "disabled car" and things like that. I think that they may be similar, but I think of them differently.

I think, "I don't think of you as being disabled," or, "I don't remember your wheelchair," I don't know if it's not really being genuine, or maybe what they're saying when they say to me, "I didn't see your wheelchair," is that they really did finally get to know who I was, and I'm not my wheelchair. But, on the other hand, the wheelchair is part of me. So,


71
sometimes my fantasy is that when I'm dealing with people, if I could draw it, I would draw it like this. Here is the page, and here would be the wheelchair, and here would be me. When they're first dealing with me, all they see is the wheelchair, and so there's this little voice that they probably can't even really listen to, because they're overwhelmed by the wheelchair.


Young

They're looking around and all distracted.


Heumann

So maybe over time I get to be like this, and maybe it's when I get to be like this that they're seeing me sitting in the wheelchair, and that is a different image. But if they can't combine the two, because it is a part of me--it isn't me, but it is a part of me--to me, what it means is that people don't understand a number of things. One is they are likely not to think about inviting me to go some place that's not accessible.


Dinner at pre-Beijing conference

Heumann

It's like when I was at the pre-Beijing conference for the U.N. meeting on women, and we had all been working late at night, and women were going out to dinner. A group of women went out first and called us to tell us where to join them. This was like another perfect example. I was just being me, I was doing my work, I was having a really good time, dah, dah, dah, dah, dah, and a bunch of us go walk down the street. There were curb cuts, I knew I could get across the street, and, there, we get to the restaurant, and there was a step.

So everybody looks at me, we look at the step, and nobody says, "Oh, let's find another place." It was very clear that everybody wanted to go into that restaurant, and that it was for me to say either, "Lift me up," which you can't do with this wheelchair because of the tip bars on the back, and which I didn't really want to do anyway, or for me to say, "Oh, I have a meeting," which I did have, "and it's no big deal. I'll just go back and eat in the hotel."

The truth of the matter is, I would have liked those people to say, "Let's go find another place to eat," and not for me to have to say either, "I'm going to go to the hotel," or I could have said, "Let's all go out some place to eat." But the truth was I didn't really know these women. It just became this group of women leaders. Here were all these women, and I was kind of over here, but, a week ago, I would have felt like I was over here. So I was feeling a little bit like a part of the group, but I very quickly went back over here.


Young

You could even have said, "I will go back and have something to eat at the hotel," if they had at least shown the respect to say, "Let's move."


Heumann

Oh, yes, I wouldn't have, because the truth of the matter is I was going to dinner with them. I had a meeting, but the meeting was an hour later. I had planned it because we had agreed we were all going to dinner. So it was completely disingenuine on my part to say it's not a problem, because it was. I find it amazing.


Young

So what did you do?



72
Heumann

I went back to the hotel, and I had dinner at the hotel, and I had my meeting an hour later. But I didn't stay at the same hotel as the women in Beijing because the hotel they went to wasn't accessible for somebody in a wheelchair. They had a separate bus that wasn't accessible, so I was in a separate vehicle. You know, it's like the message was very clear.


"I didn't see your wheelchair"

Heumann

But, on the other hand, I had an agenda, and my agenda was to integrate disability into their agenda. But, you know, they were continually uncomfortable, they saw my wheelchair.

But when you don't see my wheelchair, when you tell me you don't see my wheelchair, I have no level of confidence that you know who I am. You don't understand the political issues, you don't understand the civil rights issues, and you probably don't understand--skipping those things--the most basic issues of access, because you basically can't combine the two. It's like saying to a man, "Oh, I didn't see that you were a man." [laughter] It's illogical, right? I mean, how can you say, "I didn't notice you were a man"? Of course you notice you're a man. You notice your skin color. When racial minorities get the same kind of comment, "I didn't realize you were black," it's like, "Well, if you were blind you wouldn't realize I was black, but if you're not blind, of course you see I'm black." What does it mean to say, "I don't even see your color anymore"? What do people mean by that?


Young

Well, it's sort of a backhanded compliment.


Heumann

They think.


Young

Right. I mean, to use the expression of, "I didn't see you as disabled," it's meant to be a compliment like--


Heumann

You're just like me.


Young

Yes, "You're just kind of one of the guys."


Heumann

Right.


Young

But what it's implying is that disability is this horrible, dreadful thing that you somehow have managed to escape, rather than to see that you can be disabled and be accomplished or active or whatever. They kind of separate that if you're active, that's not part of what disabled means.


Heumann

Exactly. It's striking to me. Right. But it's alive and well. To me, because it is so extreme, the barriers and the problems that we have to overcome are tremendous. I mean, they're just tremendous.



73

Politically correct language

Young

Now, how about the uses of speech, saying to a blind person, "I'll see you later," or making a reference to breaking a leg.


Heumann

You know, my feeling about that is that if the blind person would say to me, "I don't like for you to say, 'I'll see you later'" I respect that, but outside of that, I don't think about that as an issue. I don't like the word "disabled car" because--

[phone interruption]


Heumann

People say, "You know, we shouldn't use the word 'disabled.' It means you're not able." I have felt that the word disabled is a political term. It's like black or African American or Latino or woman. It's a word that we use. These words do get changed, but it's a word that we have adopted. To take it and use it for an inanimate object when what we--. Remember Easter Seals? Maybe you don't remember, but Easter Seals had put out this set of pamphlets on correct terminology.


Young

No.


Heumann

Oh, get it. You've got to get it. Not that long ago, in the last ten years. They mailed it to all the media, you know, why you shouldn't use "cripple" and dah, dah, dah, dah, dah. In the last few years, all the words have continued to go back into the "crippled car", the "paralyzed car", the "disabled car". No, but actually the word cripple is now being used all the time in relationship to disability.


Young

By people with disabilities?


Heumann

No, in the media. Take the Washington Post. Read it. I see "crippled" all the time. There was a while where you didn't see it that often, but I see it at least once a week. You even hear it on TV in newscasts sometimes. So it's our word. Some disabled people say, use the word crippled because that is what people think we are. Put it in their face. "Disabled" is a word that we want to use to describe ourselves, and the media has chosen not to use our terminology and to use it in a completely inappropriate way. I feel like some people would argue that therefore we should change what we call ourselves because the media use it the wrong way or others use it the wrong way, and I feel like it's symbolic of people not listening to us, and I don't want to start going out looking for a euphemism of what we should be calling ourselves.

[added during editing: In the 1970s when the disability movement emerged, we stopped using "handicapped" and began using "disabled." Then nondisabled people got involved and started to influence people-first language. While I understand why some people have discussed not being treated like a human being but rather like an object, I object to changing our language and do not subscribe to people-first language.]


Young

The physically challenged.


Heumann

The able disabled. Whatever the words are, I hate them. I think, you know, Paul Longmore's all broken up about this. [laughs]



74
Young

He wants a new term.


Heumann

He does want to change the word?


Young

In part for the ableism idea, to have a way to talk about racism, but also a way to talk about, say, body studies or something. This way, when you talk about race, everybody has a race, you know, whether you're white, yellow, or black.


Heumann

Yellow people--don't ever call them yellow.


Young

Gender. Everybody has a gender, male or female. If you use the expression "disability", arguably not everybody has a disability, so it's somewhat exclusive. So he wants a way to talk about the experience of what disability--


Heumann

What do you mean, not everybody has a disability?


Young

Well, there are nondisabled and disabled.


Heumann

Right, but there are blacks and there are nonblacks.


Young

Right, but when you use the word "race", you can apply race to everybody.


Heumann

Sex--


Young

--disability--sex, gender--


Heumann

--religion--


Young

--class, you can apply all of these things to everybody, whereas, if you talk disability, it doesn't apply. You can talk "body." There's all this stuff now about body theory. Everybody has a body, but then that doesn't catch the mental element, so that's not all-inclusive either. I suggested, you know, maybe function, but he thought that gets more negative connotations. I'm not sure it's any worse than disabled. But, so he's kind of searching for a term.


Heumann

He's searching for a term that encompasses everybody?


Young

Well, that's an analytical tool that would be applied.


Invisible people with disabilities


[Tape 5, Side B]
Young

When we talked a bit about how people just don't know how to act, they don't know what to say, they're uncomfortable, it raises a bit of an issue of intentions, that there are people who want to assist people with disabilities or open doors or do things. I'm trying to think of good examples.



75
Heumann

I don't even necessarily feel that that's where people feel they have to go. I don't feel like the people that I'm talking about feel like they don't want me in their house but they'll open a door for me. I feel more invisible at times than like somebody wants to do a charitable deed.


Young

Yes, I see that, but not so much in the examples that you were saying. You talk about people who don't know what to do. That there are people who are trying to do what they think is the right thing, but are doing things that are kind of half--


Heumann

Maybe they necessarily aren't trying to do the right thing. That incident--she clearly knew she wasn't doing the right thing. I think there was a very strong statement that was going on there: "I'm not going to do the right thing." They may feel like crying, and they don't know why they're crying about it, but that was, I felt, a pretty intense statement, you know, from a woman who was African American, who deals with discrimination as her job. I will never ask her. I should never say never. But it is unlikely that I will ever sit down and have a discussion with her to ask her from where she was coming.


Identity and discrimination, gender and disability

Young

Let's talk about that a little bit, because these issues of identity and different types of identity, different experiences of discrimination are really fascinating to me.

You knew Peg Nosek down in Houston?


Heumann

Yes.


Young

I had a fascinating discussion with her. She's now running this institute on disabilities, women with disabilities. She made the comment that in working on this issue, that she's come to the realization that all along in her life when she's felt as if there has been disability discrimination and disability's been an issue, that, really, gender is the bigger issue.


Heumann

[sniffs/snorts] Uh huh? Okay.


Young

Well, that's a pretty strong reaction. I just wanted to see what you thought about it. I've never heard anybody say that. I mean, it caught me off guard. How do you weigh the experiences of discrimination--you're shaking your head vehemently--between your experience as a woman versus being a person with a disability?


Heumann

I absolutely know that in this job I am discriminated against because I am a woman. There is no doubt. I could have a very serious discussion about the sexism that exists in the workforce that is perpetrated by women.

I was at a conference that we had a couple of weeks ago, and there was this wonderful African American woman speaker. She was tremendous. She was talking about diversity. She says there are things that we have in common that are unspoken but are there. She looked at this black person--there's a group of like three hundred people there--and she


76
looks at this black guy, and she said, "I bet that you and I would agree that we had experiences growing up that are in common."

He said, "Absolutely, yes."

They didn't know each other. He wasn't just saying that. She actually knew that there was a common link because of their color.

Then she said, "And now I'll talk to all of you in the audience who are women." She didn't break it up by race. She said, "How many of you have had the experience where you put out an idea and nobody says anything. And a little bit later--"

I was sitting on the dais, and I just interrupted her and said, [shouting] "And a little bit later a man has the same idea, and he says it, and everybody says it's brilliant." She starts laughing.

I had just had this conversation with some friends of mine like a couple of days ago. [laughter] I've had the conversation a number of times since I've been in this job, because it is so striking. I mean, I can be in a room--I'm the boss, right--I have people under me who are not at my level. I'm not into this elitist hierarchical thing, but I sit there. For the first year or so that I was there, I was just dumbfounded. You know, "Is this because I'm disabled? Is this because I'm a woman? Is this because I'm a disabled woman? But I'll put out an idea and thirty minutes later I'll direct somebody: [pounding with each word] "Go-do-this!" They will go implement it, and it will be their idea. I'm like, "This is bizarre."

But, you know, when I heard this nondisabled black woman say this to this audience of women, and everybody is like laughing and shaking their heads--. There are things that we have in common as women, and the men didn't get it. I mean, they were in there, and they were like truly, [laughter] "What were they talking about?" But it was right, because we all knew it. We didn't know each other, and the women in the room--most of us didn't know each other--but we absolutely knew that. Because most of the women there were in positions of power and authority. They might not have been on top, but they were in a high enough position that they had people who worked for them. Okay. There I felt a very strong link to the women in the room.

But the truth of the matter is that if I ever said that I felt the reason I was discriminated against was because I was a woman, I would laugh. I mean, there are times where, clearly, being a woman adds an additional discriminatory factor, and if I wasn't disabled, I would be discriminated against because I am a woman. I am a woman, and I am disabled, so I am discriminated against because I'm a woman. Do you know what I'm saying?


Young

Yes.


Heumann

But there is not a prayer that I believe it. If I did a study, a scientific study to ask, you know, to talk about discrimination and to look at why I've been denied what I've been denied, and why I will continue to be denied what I will continue to be denied. But the reason it's happening is because I'm a woman in more cases than not? No way.


Young

So if you were--



77
Heumann

I think Peg's too immersed in women's studies. [laughter] I don't know.


Young

So if you were to change one factor versus the other--if you were a nondisabled woman or a man with the same kind of disability, you feel that you would experience--


Heumann

If I was a disabled man, I would feel less discrimination than a disabled woman, but if I was a disabled man, I would be discriminated against in ways that a nondisabled woman wouldn't. She really believes that? Why did she say that? Did you ask her?


Young

I'd have to go back and listen to the tape. One of the things that we'll get to later is I'm talking about the relative ways in which the disability rights movement is a movement analogous to or in the same camp as black civil rights, women's rights, gay rights, trying to situate where disability fits in that. I think it came up in that context. Of course, she also felt that disability really wasn't as much of a movement.


Heumann

As much of a movement? Or had as much potential to be a movement? I mean, it's one thing to be--


Young

Not as legitimate of a movement. It's not a movement in the same right as these others. It's really a fascinating discussion. When I get it transcribed, I'll run it by you. But I think it came up in that context where she was talking about how, you know, when she reflects the discrimination--


Heumann

Ask her the following question: A women's shelter that denies a disabled woman entrance and services is denying it to her because she's a woman or because she's disabled? There is only one answer. It ain't because she's a woman, because everybody in there is a woman.


Acceptance of the disability rights movement

Young

That's exactly what I was going to talk about next. I'll come back to this when we get to Berkeley. But the receptivity of other movements accepting the disability rights movement or people in minority roles. Do you see a relative difference between, say, African American--and I know it's inappropriate to generalize--but African American responses to disability versus women's groups response to disability? Is either one or the other more receptive? Or equally receptive?


Heumann

It's a little hard for me to answer that, in part because I don't want to be judgmental. I mean, an answer like that is a judgmental answer, but my immediate answer is they're all the same. I think when you look at them as a movement, as a whole they're all the same. No one of those movements jumped out to me that says, "We're really reaching out to our black disabled brothers and sisters," or, "to our women sisters," or, "to our Latin American brothers and sisters," or, "our Asian brothers and sisters." It's not there.

I think there are people within those movements who are understanding more about our movement and are willing to learn and to be more inclusive. I definitely feel that there are those people there, and they're more there than they were before. I think that's positive. I


78
think that those people understand that this is a movement that is equivalent to their movements.

I think you have to be incredibly persistent and explicit, vivid, stark, to allow people to understand the kinds of discrimination that disabled, let's say women, face, and how that discrimination parallels and where it deviates from them. Because, the way I basically view everybody is they're not disabled. So to me their religion, their race, their ethnicity is irrelevant to me. No group of people has made me feel that I am welcomed into their group like I feel I'm welcomed into the disability group.

You know, when I first came into the department, I felt like I did in college and high school, which is, I would feel uncomfortable going into a room of people that I didn't know. I don't feel as uncomfortable with that anymore. I have a stronger sense of myself, and I clearly feel that difference. I think I felt insecure. Now I feel more secure about myself. There is a qualitatively different feeling for me around that, and it's a better feeling. I don't care as much about certain things as I did before.


Young

Such as?


Heumann

I wouldn't go some place where I didn't know people. I just felt too uncomfortable. Now, I'll do that more. I may not stay, but--it's hard to explain. I just don't have that same feeling of discomfort, like a real visceral high school feeling. I can relate it as a high school feeling. Like going some place where I really didn't want to be, where I didn't really feel comfortable, but I had to go there. I don't have that feeling anymore as much.

But one of the accomplishments that I've really wanted to try to achieve in this job is to try to work more effectively with the race groups, because they don't accept disability. They see disability as a weakness, as a vulnerability. They also believe, correctly so, looking at the African American community, that you have African American teenagers who are being identified as having disabilities, like emotional disabilities, being removed from regular classes, being placed in separate classes where instruction is barely going on, feeling as though overidentification is a problem, and it's racist. Overidentification is partially racist. Or, let's even say it's completely racist.


Young

You mean overidentifying--


Heumann

African Americans.


Young

--with disabilities.


Heumann

Right. Or overidentifying them in a disability they don't have.

Okay. Any place you feel you've overidentified, fine. I'll accept it's wrong, and I'll accept it's racist. But the basic premise behind that argument is that if you really are disabled, it's okay that you go to a crappy program, because we don't really have a belief that you can benefit anyway. So if you're really disabled and dumb and incompetent and can't do for yourself, no problem, you can go over there. But we really don't like it if you're not dumb and incompetent that we put you in a crappy program.


79

My feeling is, when they get the issue, they'll get it and say--like the disability movement is saying--crappy programs are bad for anybody, whether they have a disability or not. Our people should be getting good services whether they're black or Latin American or white and/or have a disability. To make them understand that and be arguing for quality services for all people, then they can accept the fact that one of the things that we're fighting for is not having overrepresentation or underrepresentation, which is another problem that goes on. That people that have disabilities can get the appropriate services they need, and they deserve them, and that they see as part of their responsibility as a civil rights movement to help their people get what they deserve with disabilities. We are not there. We may not be there because people are very angry about it.

It's a difficult thing, you know, because I'm white, but, on the other hand, I feel very strongly about it. When I say to people--and I say it everywhere--when I say to people that my concern is that people believe that if you're not really disabled you shouldn't be in a crappy program, but if you are really disabled, it's fine to be in a crappy program. I have not heard anybody challenge me on that. I've had people kind of go {silence}, which makes--and I might be wrong on this--but it has made me feel like people have stopped and thought, "Maybe there's something in what she's saying."


Young

Do you think another barrier to the acceptance of the collaboration is that taking groups that have struggled publicly for civil rights and for an image of strength and vitality and self-determination, that disability represents a lack of those things or compromises--


Heumann

I'd separate your words out. I'd use the word vitality and what was the other word?


Young

I think I used strength and self-determination.


Heumann

Okay, so let's take the words strength and vitality and separate self-determination out. I think that people see strength and vitality as something that they don't necessarily envision disabled people having. So to be physically strong and to have vitality, it's the same thing that you get, regardless of your color. I think there are cultural differences. I mean, I do believe that basically there really aren't societies that accept disabled people, but disability is seen differently in the U.S. and in a poor Latin American country, a poor Asian country, a poor African country. But in all of our countries, to be seen as vulnerable or to be seen as weak or not vital is something that people--they don't want to be seen that way--themselves. They want to see themselves as being strong and vital. If you don't believe that a disabled person, a truly disabled person--you know, really weak, really unable to make decisions, really needing to be taken care of by the church or by somebody--you ultimately don't believe that those people can really contribute, so maybe you don't believe that it's worth the money or the time or the energy, and that it sucks off from the legitimate movements. You know what I'm saying?


Young

Yes.


Heumann

It's deviating, it's detracting. So I think the unions and the civil rights movements and the women's movement have a better understanding today than ten or twenty years ago, but I feel like they have not yet been integrated with disabled people becoming a part of their movements. When disabled people are really in the leadership roles of those movements--African American men and women, Latin American men and women, women of different colors and different socioeconomic backgrounds, et cetera--then we'll see


80
something different. I mean, it is fair to say that the disability rights movement is still too dominated by white middle-class individuals so that our movement does not appropriately reflect the diversity that it should reflect. But I do think it's also fair to say that this movement is probably willing to struggle more at recognizing that and making changes than the other movements are on including people into their groups who have the same color and have the same religion and have the same sex, because there is something different that divides us, and it isn't religion, and it isn't sex, it's disability.

I have to call Peg Nosek. I think that's fascinating.



81

V. College Life at Long Island University and Thoughts on Disability and Civil Rights

College aspirations


[Interview 5: July 21, 1998] [Tape 6, Side A]
Young

This is an interview with Judy Heumann on July 21, 1998. The interviewer is Jonathan Young. We are meeting in Judy's office in the Department of Education in Washington, D.C.

Okay. When you finished high school, at what point did you know you were going to go to college?


Heumann

Before I finished high school.


Young

So that was something you had been planning on for some time.


Heumann

It was always expected that I would go to college.


Young

Did you have particular aspirations of specific colleges you wanted to go to?


Heumann

I think I had applied to Julliard. I was interested in going to Julliard and applied there. I guess I did my audition when I was seventeen. I think I must have been a senior in high school when I did my audition. They told me that I should come back the following year to do another audition. I think that would have meant that I would have not started college right after high school.

My parents weren't convinced that studying music would be the best way for me to support myself, so that was kind of the end of that.


Young

From a financial standpoint, they just did not think music would be a prominent thing, supporting?



82
Heumann

Right. I mean, I think music and theater--a lot of people struggled in it--and I think that my having a disability would make it a lot more difficult. I continued to study voice and majored in speech and theater in college, but I think I was always looking at going to college. Were there any schools in particular? I think Long Island University, where I ultimately went to, was the school that I had thought about going to because some of the students in my high school had gone there. They said it was a small campus and it was easy to get around.


Fear of test-taking

Young

Did you want to live close to home?


Heumann

Yes. My brother had gone away to college, but it really wasn't something that I thought about. I think living away from home in the same city was a challenge because of attendant services that I needed, and no systems really being set up, and programs that I had heard a little bit about seemed to be more for people who were physically independent, which I wasn't. I applied to a couple of other schools. I was rejected by a couple of the schools. My SAT scores were not good. I did really poorly on competitive tests.


Young

That seems surprising to me.


Heumann

Oh, no. I did terribly on competitive tests.


Young

You're a very competitive person, though, I would think.


Heumann

I'm competitive in certain ways.


Young

Maybe it's more drive than it is competition.


Heumann

Right. But I think the testing issue for me was that having been on home instruction, we had no tests at all and certainly nothing competitive. When I was in special ed, we had no [competitive tests]. By the time I got to high school and was--I think we talked a little bit about this--in high school itself, tests were always a difficult thing for me. I always performed less on written tests than I did verbally. I think I told you I had failed chemistry. Got 100 on a test in the summer. Did I tell you this?


Young

No, you didn't tell me about that particular test.


Heumann

When I was in high school, I had, like, an 80-something average in chemistry. When I took the Regent[s examination], I got 40-something on the Regent. When I went to summer school, I went to a small Catholic girls' school around the corner from my house. There were two or three other girls in the class with me. The nun really liked me. I used to go there early every day. They used to give us both review of the chemistry course and a lot of tests. I did really well on the tests. Once I had gotten 100 on a test and the nun told me--Sister Mary Bourgia--the nun told me that that was the test that I had gotten 43 on.



83
Young

The very same test.


Heumann

I had no recollection of ever having taken the test. It wasn't at all familiar to me. She said to me, "You realize that if you don't get above an 80 in the Regent's [exam] in summer school, I will not be able to give you the grade that you need, that you deserve because they'll say that you went to a Catholic school and they just gave you a grade not based on what your achievement was." Really, all my test scores were over 90, and I got a 70-something on the Regent. I am so nervous about taking tests like that, that I decided my graduate school, based on a school that didn't require a GRE [Graduate Record Examination].

When I applied to Columbia, to graduate school, they didn't require a GRE, and I got into Berkeley, although they required a GRE, because of the way I got into graduate school, they didn't. So I never took the GREs. Never will take the GREs [chuckling].


Young

So did this affect your policies as Department of Education for approaching standardized testing? This is off the subject, I know.


Heumann

No. I don't think it affects my view of standardized testing as much as it affects my view of what happens for kids who are not taught how to take tests. Some kids, even being taught how to take tests, do poorly on tests. Tests don't necessarily measure the progress. But they do, in a more than significant percentage of the cases, measure kids' progress. But I really think that my problem was that I didn't take tests for so long that when I first went into high school to take a test, it just freaked me out. I had never been in a classroom with so many kids, let alone taken a test with so many kids.

I started thinking about college, I think the same time everybody else did. My rehab counselor talked to me when I was a junior in high school about going to college. As I said, I never thought about going to college out of the area. My father hadn't graduated from high school, and my mother had had very, very, very little college.

My cousins went to either Brooklyn College or Long Island University. That was kind of where we went. But I think most of my relatives went to college, at my age.


Young

Did it take on greater significance for you because your parents hadn't finished college?


Heumann

Finished college. My father hadn't finished high school. I doubt my mother finished first year. I don't think my mother finished a semester. I think she was working. I don't know, actually. To me, it was just something that was always expected, so it was expected of me and my brothers. Although my father would say it didn't matter to him if we went to college; everybody shouldn't go to college; only people who could do the work should go to college.

Nonetheless, I never thought of doing anything else. Thinking about a job without college was kind of impossible because I had taken academic [track]. I mean, in New York City at that time, you went into an academic track, a commercial track, or a general track. If you were in an academic track, it was assumed you went to college, and I was in an academic track, so it was just assumed I'd go to college.



84

Non-access at Long Island University

Young

When you applied, did you make it known that you were a person with a disability? Or did that just not enter into the application process?


Heumann

It certainly didn't enter into the application process. Where I went to school had no disabled students program, and the other schools that I applied to--I think Hofstra [University]--might have had a disabled students program, maybe. But Brooklyn College, I don't think did. No, at that time it was early sixties, no--mid-sixties. As I say, where I ultimately went to school, they didn't have a disabled students program.


Young

You talked about the difficulty of managing the attendant services. Were you pretty scared about going to college or basically excited? How did you feel?


Heumann

[pausing] I think I was excited about going to college, but I was also nervous about going to college because, again, the whole issue of access. Where I ultimately went to school, there was a lot of inaccessibility. The dorms that I stayed in had two steps, no ramp, and a step into the bathroom.


Young

What did you do?


Heumann

I always had to ask somebody to help me.


Young

Every day, every time to go to the bathroom, every time to get into the dorm. A pain in the...


Heumann

Yep. They didn't make the dorm accessible. They didn't build the ramp into the dorm, I want to say, until--I'm not sure whether it was after I graduated--but it certainly wasn't in the first three years. Things were just so inaccessible at that time. There wasn't a world of accessibility.


Young

There really wasn't a point of comparison. It didn't seem all that out of the ordinary.


Heumann

Not that I'm aware of. It was more inaccessible than the high school I had gone to because the high school I had gone to had a ramp, and the dorm had only two steps, so it wasn't like it was a big deal. One of the reasons why we started the disabled students program was to get things like this taken care of.


Young

What did that mean on a daily basis? Did you generally travel around the campus with a friend?


Heumann

I always had to ask someone to push me.


Young

I guess what I'm asking is did you go with people everywhere or did you just call on whoever was around when you wanted to get up the steps?


Heumann

Well, it was more likely than not that I was with somebody who was helping me get--it was a small campus. One of the reasons why I looked at the campus was because it was a small campus. It meant that the lack of access was confined [chuckling] to a small area.



85
Young

[chuckling] There's a good "half full" approach.


Heumann

There was the dorm, and there was, I think, two buildings--three buildings, maybe--no, maybe just two. I can't remember. No, I definitely always had someone push me. Usually I tried to get somebody that I knew to push me, but sometimes I would just ask somebody to push me.


Young

Was that something new in college at that time?


Heumann

You mean to get somebody to push me?


Young

Somebody that you didn't know. Or is that something that you had grown accustomed to?


Heumann

Well, in high school, the area was even smaller [chuckling], just one building. There, I pushed myself a little. Friends would help me get from class to class, or I would be going from one class to another and somebody in my class would help me get there. I also think there was an aide in the school, in high school.


Young

Not for you individually, just as a general function for the school?


Heumann

Yes, I think so. I can't swear to it, though. I don't think so. I remember aides in elementary school. I couldn't possibly tell you who they were in high school. In college, I had a friend who I had gone to camp with who went to the university before me. She was in a sorority, and she knew this one woman who lived in the dorm who would be willing to help me out, so I roomed with her the first year. Then, after that, I would in a modest way interview people. It was really more like trying to find somebody. I paid them a little bit of money. Of course, I made friends in the dorm. That was the advantage of living in the dorm, was that you really knew people since they lived so close. I joined a sorority.


Joins sorority

Heumann

The other thing was that when I was in camp the last year of high school, I met a woman named Judy W. I think she had graduated from Syracuse [University], or she was at Syracuse. There was this sorority at Syracuse, and a chapter of that sorority on the campus that I was going to go to. She had recommended me to that sorority. I never would have gone out for a sorority otherwise.


Young

Why?


Heumann

Because I just wasn't very outgoing like that. Not having a motorized wheelchair really was very inhibiting because I couldn't push myself well, and I was always very self-conscious of needing to ask for help or feeling like I wasn't pushing myself well. So, being a pledge in a sorority meant that I had to go out because there were things I had to do. I had to be at the table a certain number of hours a day, and I had to do a certain number of things. So I think actually that was probably a good thing.


86

Then it turned out that the sororities and fraternities controlled the student government for the first two years that I was at campus. Then, in the junior year, the more politically oriented people began to take more control of the student government.


Young

What do you mean, the more politically oriented people?


Heumann

Students were more politically involved in the antiwar movement and were involved in organizing some strikes on campus around tuition and other issues.


Young

So they weren't student government officers. They just took over the functions of--


Heumann

They ran for student government positions when I was in my junior year.


Young

Previously only people from the sororities and fraternities would run?


Heumann

I'm not sure only that would run, but they were the ones who won the seats.


Young

I see.


Runs for junior class secretary

Heumann

When I ran for junior class secretary, I lost by nine votes.


Young

Out of how many? What kind of numbers are we talking about?


Heumann

It was a couple of hundred votes. I don't know. But at any rate, I lost. Then, when I was going into my second semester, junior year, the woman who I had lost to quit [chuckling]. So I ran again, and then I was elected, so I was junior class secretary for half a year, one semester, and senior class secretary for one year.

What do you want to know about college?


Small campus setting

Young

Well, I was letting you finish with that. You talked about it being a real small campus, with a dorm and two buildings. How many students in a class?


Heumann

There were, like, sixty-five hundred students on the whole campus.


Young

Sixty-five hundred?


Heumann

Undergraduate and graduate.


Young

Pretty big, then.



87
Heumann

Not for a New York school. Well, it was mainly a commuter campus. The majority of students didn't live in the dorms.


Young

But all the academics fit in just those two buildings.


Heumann

Yes. I'm trying to remember. There might have been three buildings. But there were no more than three buildings.


Young

What was the ethnic or religious or gender or any other type of diversity on campus?


Heumann

It was mainly a white campus. It had a significant population of Jewish students. But there were also African American students; they had a sorority and a fraternity. Some Hispanics.


Young

How about people with disabilities?


Heumann

Yes, there were disabled people there.


Young

Mostly physical; i.e., wheelchairs? Or what types of disabilities were represented?


Heumann

Well, over the course of my being there, there were students who had more types of disabilities who came there. But my recollection in the beginning was it was primarily physically disabled students.


Use of attendants and support from DVR

Young

You made allusions to attendants. What was that like? You haven't really mentioned any attendants so far in terms of getting around the campus.


Heumann

I had different people who helped me in the dorm.


Young

Just fellow students? Nobody who was a professional attendant?


Heumann

No, students that I paid. I never used professional attendants in my life.


Young

What is involved with that decision?


Heumann

With the professional attendant?


Young

I guess I'm thinking of somebody that's--


Heumann

Paid?


Young

At least that's what they commit their life to, as opposed to, say, a student who is a full-time student and doing a little bit of work on the side.



88
Heumann

I think there are lots of reasons. One is that the cost was prohibitive, and there was no way of getting any money for covering it. But I think the other issue is they were so medically oriented. You know, they didn't see themselves as an extension of me. That was never an issue.


Young

You've talked about finances. How did you support yourself through college?


Heumann

I was supported by DVR [Department of Vocational Rehabilitation].


Young

Did that pay the entirety of tuition, books, room and board?


Heumann

Yes. I can't remember. It paid for my tuition; it paid for my books. I don't remember whether my parents paid for the dorm. I can ask my mom.


Young

But they wouldn't have provided any money for attendant care. That was something that came later on. Because your parents helped you out there. You weren't working to pay for the others.


Heumann

I did work, actually. I worked in the summers, and I worked as a work-study student, so I worked one year in the president's office and got paid for that, and I volunteered in the reading clinic, and I volunteered in a community clinic. As I said, I worked in the summers and got paid in the summers. I'm trying to think. Then I worked for Dr. [Theodore] Childs, when the Disabled Students Program started. I might have gotten paid doing some work there. I didn't earn a whole heck of a lot off of work-study.


Young

I don't think that has changed.


Heumann

Right.


High school versus college

Young

How about your courses? Was it more challenging than high school or more of the same? What was your impression of the academic side of college?


Heumann

It was more challenging than high school. I took speech and language classes and the basic history and sociology and language and math and all those sciences. Majored in speech and minored in education. I think I enjoyed a lot of college. I liked graduate school the best, from an academic perspective, by far.


Young

What didn't you like about college that you did like more in graduate school?


Heumann

In graduate school it was the field that I was in that I really liked. I liked public health, and I liked the courses I was taking. They made sense to me, and they were valuable for me to do the work I wanted to do. I really did learn from them. In college, you know, some of the courses were of interest to me. Some of them you just had to take. But a fair number of them were of interest.


89

But I think when I did finally go to California to go to graduate school, I also had a motorized wheelchair and at that point, then, I was on SSI [Supplemental Security Insurance], and I had IHSS in California, In-Home Supportive Services, so I had money to hire somebody for six or seven hours a day, which made it very different because I could have somebody in the morning and somebody at night.


More on attendant needs

Heumann

But at UC Berkeley at that time, also, the campus wasn't very accessible, and the bathroom in the building that I mainly went to school in didn't have an accessible bathroom, so I had to go to the [Physically] Disabled Students' Program every time I had to go to the bathroom and ask somebody there if they would be willing to help me.


Young

Where was the Disabled Students' Program at the time?


Heumann

It was behind Top Dog.


Young

On the north side of campus?


Heumann

You know where Bancroft is?


Young

Okay, Bancroft, okay.


Heumann

Towards the hills, on the other side of Telegraph, going toward the hills. Across the university.


Young

So you had a fair bit of traveling, then, just to go to the bathroom.


Heumann

Oh, yes. Definitely.


Young

Gee! We'll get back to that a little bit more. In college, I know you got involved politically. Was that where your heart was? Or was your heart more in the job that you did and the people you were with? What really drove you in college? What was your priority?


Heumann

I studied, definitely. My priority was school. But then I also did numbers of things that were related to school. I worked in the Reading Clinic, and I worked with some friends in setting up a community after-school program, and I liked both of those things a lot. But they were relevant because I was interested in being a teacher, and that gave me an opportunity to get work experience. Working in the Reading Clinic was something I needed to do for part of my coursework. I had to work in a clinic or someplace like that, a community program.



90

Teaching as a career goal

Heumann

I did that also. I worked in a hospital, I think.


Young

When did you become interested in teaching?


Heumann

Before college.


Young

Why teaching?


Heumann

I don't know why teaching. I was interested in it. I thought that I liked kids, and a lot of my family were teachers, my cousins. Most of them who went to college--not all of them, but most of them--became teachers.


Young

Of course, there was the big lawsuit toward the end. Did you have any sort of forewarning about that when you entered the program of education?


Contacts ACLU

Heumann

Sure. There hadn't been any teachers that had been hired who used a wheelchair, so I had actually called the ACLU [American Civil Liberties Union] before anything had happened and said, "I'm interested in being a teacher, but I know there are no people who have been hired as teachers. What do you suggest I do?" They said, "Well, just go ahead and take the courses that you need, and if you have a problem, call us." [sneezes] So when I [sneezes]--excuse me--[sneezes]--excuse me!


Young

Bless you.


Heumann

So when I did have a problem--what actually happened was I was interested in studying education, but friends of mine in high school had told me--



[Tape 6, Side B]
Young

So you had high school friends who told you not to tell Voc-Rehab you were interested in teaching.


Heumann

Right.


Young

Because they knew that Voc-Rehab wouldn't support it?


Heumann

Because at that time, whether fact or fiction, it was believed to be fact that you had to be able to show rehab that there was someone who had a disability similar to yours working in a profession like the one you wanted to study for.


Young

You're kidding.



91
Heumann

You're a baby [chuckling]. You don't know all these things [laughing].


Young

I admit naivete. Literally, you needed to point to an example.


Heumann

That's what people told me. So they said, "Don't tell anyone you want to be a teacher because if you tell them you want to be a teacher, they'll tell you you can't be a teacher because--"


Young

Nobody else is.


Heumann

"--nobody else is a teacher who's in a wheelchair."


Young

So much for the visionary notion of "be what you can be," huh?


Heumann

That was kind of an inherent conflict with what we were told. That's why I think a lot of the work that I began to get more involved in around the politics of things was because it was becoming clearer and clearer that this concept of an American dream really was not true for myself or for other people that I knew. There were lots of barriers and limited expectations and limited opportunities.


Career counseling in high school

Young

You talked about high school. I asked you something about reaction of teachers in your high school, and your high school teachers didn't really seem to give any particular message like that. They did support you.


Heumann

Yes, but there never was a high school teacher who had a disability. We never discussed what I wanted.


Young

Okay. Well, I guess, the topic of a career...


Heumann

I didn't have any career counseling.


Young

Right.


Heumann

I joke about the only career counseling I ever had was the speech therapist, Mrs. Malakoff, who told me when I was in the fifth grade that I would be a good speech therapist because I understood the kids who had cerebral palsy and I could get an MRS degree and work in a hospital. That was really kind of the extent of the counseling I got. I asked what an MRS degree was and she said I could find myself a husband and get married.

In high school, I did know a high school student who had a disability, who wanted to be a Spanish teacher, but she had a heart problem. She didn't use a wheelchair. Not all the kids in my class used a wheelchair, in my homeroom, especially at homeroom. Actually, more of the kids didn't. More of the kids had very minor disabilities. You weren't quite sure why they were really there.


92

There was a guy named Barry Foster. He had arthritis. There was a guy named Steve Goldman. He had polio. Linda Slone; she had polio, was in a wheelchair. Karen Rose; she had polio. But then there was my friend[s]--like Nancy and Mimi. We never knew what Mimi's disability was, except she was always nervous. But, in her neighborhood, she didn't look as if she had a disability. There were no such things as IEPs or anything at that time.


Young

IEP?


Heumann

Individualized Educational Program, what you get now under IDEA [Individuals with Disabilities Educational Act]. There was no such thing then. It was somewhat arbitrary about how you got into special ed. Nancy had a heart problem.


Young

Nothing that was really an impingement on--


Heumann

Right.


Young

--their being a teacher?


Heumann

Yes. So the students who had more significant disabilities were looking more at social work or speech therapy.


More on DVR support

Young

Did the VR [Vocational Rehabilitation] dollars have to be approved on a semester basis by the courses you took, or did you have a free rein?


Heumann

You had to submit what you were taking. I mean, VR dollars were much better then as far as what I was able to get, because I went to a private school and they paid the tuition.


Young

The courses you were taking: were they the courses you needed to take to be a teacher?


Heumann

To be a speech pathologist and to minor in education. I had two minors. I had the minor in education. I don't remember what my other minor was. But my basic degree was in speech and theater, with an emphasis on pathology. A minor in education, and a minor in--I mean a minor was four courses. Almost two years of what you took were required courses, and then you took the specialty courses.

What was very ironic was when I applied to Rehab for services, you had to take a psychological test. That's one of the things that has been changed over the years. But you had to take a psychological test.


Young

What was the purpose?


Heumann

To test your IQ and test your areas of interest. I had said I was interested in being a speech pathologist, and they said I tested better to be a social worker. So my parents said, "If she wants to be a speech pathologist, you'll pay for her to be a speech pathologist." In point of


93
fact, you know, it's kind of funny because I really am more social-work-oriented, but there really isn't a very big difference between speech pathology and social work as far as helping professions. One has got more science than the other.


Attempt to bar from dorm

Heumann

I did well in my speech courses in college and did well in my college classes. What I liked about college was when I was involved in some of these extra programs, when I was involved with the Reading Clinic, when I was involved in setting up the after school community program. [whispering to herself] What was it called? It was the Fort Greene Community Center, I think is what it was called.

Tony Mellie was the guy who did a lot of the work on getting this after school program set up. I had met him--I'm not sure if it was through student government--through classes. Anyway, he was a nice guy, and he was very community oriented, and so I did work with him. I was involved with that, the Reading Clinic, I was involved in student government, I was involved in sorority, I was involved in working with other disabled students and getting the Disabled Students Program together.

But I was also having some ongoing problems that were there. The first year I lived in the dorm, I had my friend Tony, who is still one of my good friends, who helped me out. I was also able to do more in those days, for myself.


Young

In what sorts of ways?


Heumann

I used to wear braces at that time. I could get from the wheelchair onto the bed, but I couldn't get my braces back on, myself, and so I needed help putting them on. I couldn't get up the step, but once I had gotten up the step, I couldn't get down the step by myself, but I could help myself more in the bathroom than I can now. It might have been because I was wearing braces at that time.

But the second year I was to come back to the dorm, I had this woman who was from Egypt who was going to help me out. I got a call from the head of the dorm, like a week before school was supposed to start, telling me that the woman who was going to help me out was no longer willing to help me out, and so I couldn't move back in the dorms.

I called the president of the board of the school and told him what had happened. I did go into the dorm. The dean brought me to the dorm, and I got another attendant. But I was the first student in a wheelchair to live in the dorm.


Young

All the others had lived with families?


Heumann

They lived in Brooklyn, and they just went home.


Young

Did you have to get a special concession to do that the first time around?


Heumann

No, I mean, I don't know what happened.



94
Young

It wasn't prohibited; it was elective that people hadn't done that before?


Heumann

Yes, yes. I mean, it cost more money to live in the dorm. The other people that I knew who went there could drive, so they drove home. But I couldn't drive, so it was convenient also to live in the dorms. It was both socialization and convenience. But I went home every weekend because I felt very uncomfortable staying in the dorms on the weekend.


College dating

Young

What went on on campus on the weekends?


Heumann

Nothing I ever really participated in. Some people went home because it was more a commuter campus. People dated and did things like that, but I was never included in that.


Young

Was it a party atmosphere?


Heumann

Yes. As I said, I usually left on Friday and came back Sunday. One weekend I was there, and I remember some guy. It was kind of a liberal school because we allowed guys on the floors between certain hours. I remember some guy knocking on the door and asking me if I knew somebody. They had an extra guy downstairs and did I know somebody who was looking for a date. That's kind of what my vision of college was like as far as dating was concerned.


Young

So sex, drugs, and rock and roll you just kept an arm's length from?


Heumann

Well, as far as with the college kids. I mean, I had boyfriends and stuff from outside of college.

[tape interruption]


Heumann

I dated other guys but not from school. I went out with guys that I had met through camp or other disabled friends.


Young

Was it a different experience than in high school?


Heumann

Well, I was older, so [chuckling] yes, it was. Living on the campus was different. The first two years, the way our dorm was--


Young

I was thinking of dating in particular, but go ahead.


Heumann

I dated more than I did in high school. In high school, I only dated when I went to camp, at camp. When I went to college, I didn't do a lot of dating there either, but I did more. The first two years, we lived on floors where we had a room, so it was two of us; but then the next two years they had apartments. There were three or four of us who lived in the apartments, but we had two bedrooms and a kitchen, so it was more social. Then I moved


95
into my own apartment with some other friends. I never dated anyone from the nondisabled community at the university.


Young

To what extent did your relationship with your parents change? You didn't have a complete break in the sense of being gone for months on end. Being there only on weekends would make it different, still.


Heumann

Yes. I mean, I talked with them frequently, and I went home on the weekends. My father used to pick me up during the week and take me to the city for voice lessons. I didn't sleep home during the week, like, four or five nights a week, but I did on weekends and most holidays.

[tape interruption]


Young

Do you think that the disability experience affected your separation process? You talked about the typical separation process. Was that delayed in any sort of way?


Heumann

Certainly, my options--or what I considered my options--I felt were more limited because of my disability. I needed my family, both emotionally, which I think in good family relationships you need that. But physically I needed them because there were just things that I couldn't do without them.


Initial foray into politics at Long Island University

Young

You have alluded a couple of times to your getting involved in politics and the DSP as being your first big issue. Tell me a bit about how you--


Heumann

Disabled Students' Program?


Young

Right.


Heumann

The first political step I got involved in was the student government.


Young

Okay. I was under the impression that DSP came earlier.


Heumann

No.


Young

Tell me the narrative history of your political involvement.


Heumann

When I think of when I first got involved in something that I would call really more political, that would be when I ran for office, for student government, because there I was a disabled person, but I was running for class secretary. I was definitely doing work with the Disabled Students' Program. But I think in college, I was involved with the student council, I was involved with more of the political work that was going on on campus.

There was a strike that had been organized, where the campus was shut down because of a tuition increase, and I was involved with that. There were antiwar activities that were


96
going on, and I was involved with that. I wasn't ever the front-line person in those activities, but I was definitely involved. I still didn't have my motorized wheelchair. I had a discussion with the guy who had been the senior class president, I guess toward the end of my senior year. He had said to me that he really had thought that because of my disability, I wouldn't have been able to do the job, but that he realized he was wrong and I had done a great job.

So it was always something that I always knew was a part of what was happening.


Young

That the disability was part of what was happening?


Heumann

Yes, the disability was still always being looked at and I wasn't just the junior or senior class secretary. They were wondering what I was going to be able to do. But within a short period of time, that, I think, was dealt with. But still people had those thoughts.

I was never convinced that the reason that I lost didn't have something to do with the fact that I had a disability because I had lost by such few votes. Of course, there were slates and I wasn't on one slate and this woman was on another slate, so that certainly was part of it.


Young

What were some of the principal issues that you addressed--not necessarily you personally--but as secretary, what things were you involved with?


Heumann

Oh, God, that was so many years [chuckling] ago! That was thirty years ago. Just the general activities that were going on. As I said, there was the strike that was going on because of the tuition issues, so I was very involved with what was going on with that. Just the general operation. I also was at that time working in the president's office and was a receptionist in the president's office. But I had a good relation with President [Alexander] Aldridge.


Importance of technology

Heumann

I mean, I was gradually moving up, getting to feel a little bit more secure about myself. I think not having a motorized wheelchair and being in such an inaccessible environment really continued to be problematic. The public transit systems weren't accessible. I couldn't drive. All of these opportunities to break out and do other things were more difficult for me to do, so, while I was feeling like I was moving ahead, I also was feeling like I was continuing to be limited in what I was able to do.


Young

The importance of technology just keeps coming up over and over and over again, especially with respect to the motorized wheelchair but then also the access. It really underscores the whole idea of it's not just the individual but it's a social phenomenon. There need to be things to enable the person to--


Heumann

The way people saw me was impacted significantly by what I couldn't do, and I really couldn't do it. I couldn't get up. That's why I hate this stuff of disabled but able. I hate those plays on the word. To me, disability is an inability to do something, and I have an


97
inability to walk. The inability to walk wasn't a problem or wouldn't have been a problem if there were ramps and not steps, and doors that were wide enough. But even with those barriers not being there, I still would have needed additional assistance because of the significance of my disability.

So because personal assistant services were something not typical, because the access was not good, I was continuing to have to rely on people to do things that other people didn't need to rely on people for. It continues to put you in this position of appearing as if you're unable to do things that in fact I was able to do. That's why this issue for me of having a handicap versus a disability, or being handicapped by--because I certainly was handicapped at that university. Probably less handicapped at that university than many other universities because the size, the smallness of that university, was very helpful. UC Berkeley without a motorized wheelchair would have been impossible.


Young

I realized that.


Access a societal problem

Heumann

A lot of people do that, but it certainly would have been more psychologically traumatizing. When I was at the university, in my junior and senior year I was more comfortable; I was becoming friends with more people. I was friends with some of the people who worked at the paper. The newspaper was a good newspaper. It was, I think, probably an atypical college newspaper. A lot of the people who worked at the newspaper when I was there actually are reporters now in Newsday and set up their own publications and things in New York.

One of the people did a series on the problems of access on campus and how that needed to be dealt with. They interviewed the dean of the School of Psychology, who said that he felt it would be better for disabled students not to be going to school at the university because the access was so bad that it caused psychological problems for the students.


Young

He said that it would be better because it was traumatizing on the other students?


Heumann

No, disabled students, that we had all these difficulties. Instead of saying the university should have had an obligation to make itself accessible, his solution was have us not be there. We said this is ludicrous; the solution is we need to be here, and they need to take care of the problems.


Economic supports for people with disabilities

Young

It points up an interesting tension that I know we've talked about before, not in the course of the interview, and that is in the history of the disability rights movement, there is the discussion about moving away from the medical model, that it's not the individual but it's


98
a society problem. But what you were saying before is that there is a functional basis to disability.


Heumann

But it still is a societal problem. In this society, if you're a veteran and you become injured in the line of the military, it is accepted that you'll be compensated. The compensations are based on your level of injury. Now, what a veteran doesn't get is the barriers removed from the general society. What the veteran did get and does get are economic supports to compensate for the loss of certain parts of their body.


Young

Right.


Heumann

So if I lived in an environment where there were no physical barriers, the economics would be there for me to be able to assist me in performing those tasks that I can't perform by myself. If I were to become disabled today, as a veteran, I would be existing in a society where there were significant barriers that had been removed, and I would have the financial wherewithal to be able to purchase the assistance that I need and do all these other kinds of things so that the needs that I had would be more invisible. My needs become more visible when I have to ask people for [help]. We're in a society here where asking people for help, as a rule, is something that is not really considered appropriate.


Young

What you're describing, though, in the case of the veteran, it's not enough simply to have the barriers removed; there needs to be financial compensation?


Heumann

For certain levels of injury.


Young

For the levels of injury, then, that are rooted in the body. I think that's a tension that some people want to push it to an extreme where it has nothing to do with the individual body; it's only society.


Heumann

I understand, but what I'm saying to you is that a fair-haired person, a fair-skinned person who has to be outside all the time puts sunblock on and a hat. Nobody thinks anything of it.


Young

Sure.


Heumann

But a person who has a more extensive need, it is seen as being different because it's more atypical. I think equally important is that we haven't built into the system the kinds of various supports that you need to make these needs invisible. I'm not talking about not acknowledging them in a very public way, because I think having a disability isn't being part of a movement; it's to acknowledge it. But it doesn't have to become a handicap if the supports are there and barriers are removed.

But you're still thinking that there is, for you--


Young

That there's what?



99

Disability issues and civil rights

Heumann

A tension between--what's your perspective on this?


Young

My perspective is based on a research experience of looking at, in part, supporting the ADA [Americans with Disabilities Act] and in explaining why the ADA is necessary, pointing to the need for greater Social Security payments and more healthcare benefits which, as you know, didn't really have anything to do with the ADA, but there's emphasis on things that are provided on the basis of a physical or mental impairment. The rights model pushes in the direction of saying removing physical or whatever barriers in society and give people an equal chance to just go out and make it on their own, so to speak.

I think some critics would like to say, well, which is it? Which do you want? Do you want to have the equal opportunity in society or do you want to have health benefits or income payments because of your disability? My position is not that they're exclusive but that I don't think people have really put them together.


Heumann

I try to put them together all the time.


Young

People talk in some ways about one or the other but not together. So that's kind of what I'm getting at.


Civil rights model

Heumann

Let me see if this is in part what you're also talking about. See, I think that the traditional civil rights model talks about removing barriers, and the removal of barriers--you know, Brown v. The Board of Education--the barrier you're removing is denying the person an opportunity to go to a school and all of the supports that need to take place to facilitate that integration happening.

But when we're talking about individuals where the discrimination is more than just what discrimination has been in the area of race--


Young

A willful denial.


Heumann

Well, there's willful denial in both cases, but removal of the willful denial does not enable all individuals to have equal opportunity. So the issue of the bus is a perfect example. We did agree that you could not honestly say to somebody, "You have the opportunity to get on the bus. You can crawl up the steps." We didn't consider that to be equal access. But I think that what really happens is that as the needs that we're talking about impact a smaller and smaller percentage of people, that we don't necessarily have the full base of disabled people there either, really supporting the argument because in part I think what's happening is people are trying to pass. So it's like, well, if you remove the step and you put a ramp there, a lot of people have access that didn't have access before. Of those people who need the ramp, most of--



100

[Tape 7, Side A]
Young

You were using the bus as an example of the process of making--


Personal assistance services

Heumann

See, what goes on here right now is we have a civil rights perspective, which is civil rights doesn't cost money. I don't have difficulty with that. Well, I think we need to have further discussion about the different needs that disabled people have, and is it a civil right to get on a bus but not a civil right to get personal assistant services? The reason why we don't equate them the same is because we believe that we can pass the cost of one off to an entity called the Department of Transportation because we compute it out and we say it really only costs this much money over the course of a lifetime of a bus; it's insignificant and therefore--

But in the case of a person who needs personal assistant services, we don't call it a civil right, as a rule, because we don't feel comfortable assigning that responsibility to an entity. You know 504 and ADA really better than I do, on a substantive level. But personal assistant services is not equivalent to interpreter services. Why? I mean, to me it's not equivalent because of the personal nature of the service. An interpreter service--it's not that it's less expensive because, quite frankly, interpreter services are more expensive.


Young

Sure, it's forty dollars an hour.


Heumann

Right. But we say that a reader service, an interpreter service is a service that has to be provided, but we explicitly say that there is no requirement to help feed a person, to help a person go to the bathroom. That's explicit, right? Why is that? It's illogical.


Definition of a civil right

Young

What does it mean to you to say something is a civil right? If you say that getting on a bus is a civil right, what does that mean?


Heumann

It means that the average person in this country--if there is a bus that comes into their neighborhood or they go into a neighborhood where there is a bus--cannot be denied the opportunity to get on that bus because of race, sex or disability, or class or whatever. We have moved by saying that in order to enable a disabled person to get on the bus you cannot just say that we have removed the barrier, which says you are not allowed on the bus, verbally.

We've acknowledged that it's meaningless if, in fact, you don't provide a remedy. But we've said that if the remedies cost too much, you don't have to provide them. If it's an undue hardship, you don't have to provide it. We say, well, we really don't invoke undue


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hardship because how often has undue hardship really been invoked? Very infrequently. But I think this is an area that desperately needs significant discussion. Look at IDEA as an example. IDEA came about because states said that they didn't have the same responsibility to disabled children as they did for nondisabled children in the area of education. The kids cost more money, and the federal government will provide additional funds to help you provide disabled kids with a comparable education.

We never did that in transportation. So we have these kinds of holes in the policy.


Young

I think part of the trapping, too, is that we get tangled up about the definition of disability, confusing natural right versus civil right. Is it our potential as a society to declare anything that we want to to be a right? I think certain things strike people as being illogical because that's what they're accustomed to and certain things are more of a right than others.


Heumann

Nondisabled people think that it is a right to be able to go to the bathroom. They think that it is completely a right that there should be bathrooms, they should be easy to use, they should as a rule be free.


Young

It's a good point. You never think about it. There would be protests at restaurants.


Heumann

I do, and I've used it. I was on a committee dealing with the issue of making toilets accessible on airplanes. When I said it was fine with me if there were no toilets on the airplanes, people laughed.


Young

Good point, good point.


Heumann

I said to them, "Look, it is not a problem for me if you are denied what I am denied. If I can't use the bathroom and you can't use the bathroom, hey, that's equality." But they laughed at it because going to the bathroom is something, which is absolutely taken as a right. I don't know if you call it a civil right, a natural right, a human right. Whatever it is, it is something that people accept. Harlan Hahn said he wants to go into a meeting where there are no chairs in the room. When people say, "We need a chair," to say, "We didn't have the money for it."


Young

[chuckling]


Heumann

But it's those types of things that people just take for granted because the vast majority of people use it and can use it. Now, if we put the same number of bathrooms in the facility and we made the doorway three inches wide, people would protest. They would see the lack of logic in putting a toilet that they couldn't use, that would be symbolic and unusable, and stupid. But they don't see anything wrong or didn't see anything wrong--I think more people see things wrong now because--but still, it's still a very good analogy. They don't see a comparableness to saying, Well, you need to be making things which are usable and available. For me, part of it is making sure that there is a bathroom I can get into. But the other part is making sure that I can use it when I get there. I can't use it by myself.


Young

So should PAS [Personal Assistance Services] be a civil right?



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Heumann

I personally think so. I mean, is education a civil right? I don't know. What do you call it? Do you call education a civil right?


Young

That's why I put the question to you because the ADA comes through and some people were saying this isn't a civil rights issue. But part of the success of the ADA was that it was presented as a civil rights issue. I think sometimes we presume civil rights are more absolute than they really are, and people don't realize--this is what I'm saying: people that are opponents think that civil rights are somehow natural and set in stone before the age of time, and don't see the way in which a civil right is something that we have socially agreed upon, whether tacitly or assertively.

So when you talk about something like PAS being made a civil right, people kind of recoil because it's somehow unnatural, but don't realize that all these other ones have been constructed to be a right. That's the idea I was getting at.


Heumann

People, I think with the interpreter issue, don't necessarily believe that it should be a service that people can get, whatever we call it.


Young

Right.


Role of society

Heumann

Now, on a certain level we can skip the terminology. The question is: What role do we believe society should play, and which corners of the society should be involved in helping to facilitate certain things happening? In this country, because we so much have this philosophy of independence and "pull yourself up by the bootstrap" that anybody who needs above what some mythical group out there says you have a need for--

[to another] Is that Michael?--and because we don't deal with this issue of who pays, it constantly puts the person who needs the money in a compromising position. We keep passing the buck to somebody else. It's this one's responsibility; it's that one's responsibility. Someone's got to be given responsibility, make the school responsible. When you make the school responsible, then people are annoyed because it's taking funds away from other kids. You can get into a whole discussion is there a certain level--

[tape interruption]


Heumann

[back to microphone]--and above that level that someone else should be stepping in? Absolutely up front and direct. There are in other countries--and here in the U.S.--skip other countries. If you're a veteran, you get your first car and the accommodations for free. Your second car, you get your accommodations for free. Because the accommodations are something that they recognize. Maybe it's illogical; maybe every time you need a car, if you get it once, you should be able to get it twice and a third time. But there is some logic in saying that we're looking at covering the additional costs. What are the additional costs? We should cover the additional costs. Make it less painful.



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VI. Vocational Rehabilitation Support Through Graduate School; Growing Awareness of Disability as a Societal and Environmental Barrier Issue

Experience with vocational rehabilitation


[Interview 6: October 28, 1998] [Tape 8-1, Side A]
Brown

This is an interview with Judy Heumann. The interviewer is Susan Brown. We're meeting at her house on Connecticut Avenue in Washington, D.C., on October 28th, 1998.

In earlier interviews, you mentioned talking with a Rehab counselor when you were a junior in high school and that Rehab paid for at least part of your schooling--tuition and books is what I remember you saying. When did you first become involved with the Rehab system?


Heumann

It was either in my junior or senior year. I think it was my junior year. I had at least one meeting with them in my junior year, where they came in to tell me what Rehab was, and then I applied to Rehab, I think, in my senior year.


Brown

So did they come and get you out of high school and said, "This is a program that everybody needs to know about"? How did you really find out about it?


Heumann

I didn't. They come to you. I was in a regular high school but in a special homeroom for disabled kids. I know I didn't contact them. I don't exactly remember, but I definitely remember meeting with them. It was a man, and I remember him telling me what Rehab was, and I guess what the process was.

Then, when I was a senior and was applying for school, at some point in the senior year I applied to Rehab and had to take a psychological test and had to meet with them to talk about what I was interested in. After I took the battery of psychological tests, I had told them I was interested in being a speech pathologist. They said that the tests showed that I should be a social worker. My parents basically said, "If she's interested in being a speech pathologist, you should support her to be a speech pathologist."


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But they paid. I went to a private school. They paid for private school tuition. I think they paid for everything, actually--my dorm, my books.


Brown

What were your initial expectations of the system? When that man presented it to you, what did he tell you you could expect them to do?


Heumann

I don't remember at all.


Brown

Were you surprised that they paid for your tuition and your books?


Heumann

No. At that point, there wasn't a controversy around Rehab like there has been over the years, at least nothing that I was aware of. Basically, those of us who were Rehab clients did better than most other people because at that point they weren't as restrictive. The law was moving in the direction of serving individuals who had more significant disabilities. I had one of those. So I think that was probably good for them.

I guess one of my recollections was when I went to take the psychological exam, I had this psychologist who--I remember one part of the exam I had to do something timed, like rearrange blocks or something, to copy the design off a picture, and I started before he pushed the watch--he freaked out. I remember thinking, "This is too bizarre."


Friend of the court request

Heumann

But anyway, I studied to be a speech pathologist, I was interested in being a teacher. I had to send my grades in every year, and I talked to my counselor, like, once a year on the phone, and never told them that the reason I was taking courses in education was because I was interested in being a teacher. They never knew that until I took my exams and was failed on my medical. I guess they started reading it in the paper the same time as everybody else did.

When I had that lawsuit, I asked Rehab if they would come in as a friend of the court, and they wouldn't.


Brown

Who did you ask, your counselor?


Heumann

Yes.


Brown

Did you have the same counselor the whole time you were living in New York, do you remember?


Graduate School Support

Heumann

To the best of my knowledge, yes. But Rehab paid for me to go to graduate school, so I personally did very well by Rehab. They paid for graduate school--California paid me--and they paid for my internship, and I did it in Washington.


Brown

Who paid for that, California?



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Heumann

California. When I was in New York, New York Rehab. When I went to California, California Rehab picked me up, and they paid for my tuition, my books, and I had a stipend. Rehab had a stipend as a rehab agency, and so I was eligible for a stipend.


Brown

This was the whole time or just in New York, when you were in school?


Heumann

No, this was just California.


Brown

New York didn't have a stipend.


Heumann

No. But New York paid for my books. I don't think I got an allowance in New York. They paid for my tuition, my books, my room and board. And then, when--I think--when I became a junior in undergraduate school in Brooklyn, I moved into an apartment in the dormitories, but I don't believe I got a stipend for food.

Then in California, I had a stipend for a while.


Brown

How much was it? Could you live on it?


Heumann

I was on benefits also.


Brown

Could you live on the combination of benefits and the stipend?


Heumann

Right, because I had SSI [Supplemental Security Income] and attendant services and a stipend.

Then, when I went to do my internship, the state agency in California paid for my airfare back and forth, and they paid for the rental of a van, the rental or purchase of ramps for the van, and they paid for a driver who took me to and from work.


Brown

While you were here in D.C.?


Payment for driving evaluation

Heumann

Yes. They paid for me to get a driving--actually, New York paid for me to get a driving evaluation--and California paid for a driving evaluation.


Brown

So you had two different evaluations?


Heumann

Years apart. The one that I did in New York was just to teach me how to drive a regular car with hand controls. That was useless.


Brown

Why?


Heumann

Because I'm a quad, and I couldn't transfer in and out of a car and I wasn't strong enough to use the hand controls.



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Brown

Was the balance a problem as well? There wasn't anything to hold onto in a car?


Heumann

Right, yes. Actually, I may have been using my braces when I took my driving in New York. My balance wouldn't have been as much a problem. I think I was, actually. My driving wouldn't have been as much a problem. When I was in California, I went for my driving evaluation, like, in '77 or '78, in Texas, because they had a program in Texas to evaluate people who had more of my level of disability. They paid for me and a personal assistant to go to Texas. But the guy said what I needed wasn't available yet, that I needed to wait for about ten more years.

Actually, Rehab did start to evaluate me again for driving in the 1990s. Now, that time I had more problems getting evaluated. They finally agreed to do the evaluation, and they had the type of vehicle that I could have learned to drive from, but there was only, like, one in northern California. By the time I had gone through an appeal to get them to pay for it, and tried to work out a schedule with the company that canceled a couple of times because--and there was one guy, and things happened--actually, nothing ever worked out. Then I came to D.C. That was the end of that.


Expectations from Rehab

Brown

Going back to your earlier experiences with Rehab, what expectations did you feel that the Rehab professionals you worked with had for you?


Heumann

That you go to college and get a job.


Brown

You felt that seemed completely fine with you, that that was what everybody just expected of you in the Rehab reality?


Heumann

Yes. They would not have paid for me if they didn't think I could get a job.


Brown

Do you know how your family felt about your experiences with Rehab?


Heumann

Except for that one incident, where they had to tell the counselor that I should be able to study what I was interested in, I think everybody felt very lucky that they were putting so much money into my schooling, because it was a lot of money.


Brown

Did you have higher expectations of yourself, then? Was there any sort of pressure on you that you had to go and you had to succeed, or do you think you would have had all that sort of feeling for yourself anyway?


Heumann

I don't feel--


Brown

If you or your family were paying for it.


Heumann

Well, in my family there was always the expectation that you got good grades. You had to keep a certain level of grade in order to get the money from the state, but that never really


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was a concern to me because I was more concerned about my parents if I didn't keep my grades up than I was about Rehab. I never thought about it, really.


Lack of job development

Brown

From your current vantage point, how do you overall assess the professional rehabilitation that you received in your early and college years?


Heumann

Rehab for me was not a place that gave me either a lot of job counseling or helped me find a job. I found my jobs all by myself.


Brown

Was that something you had expected them to do for you, or something that you expect in your position now? Is that something you would expect Rehab to do for people?


Heumann

I always knew that one of Rehab's purposes was to help people find jobs, but even at that point, people were complaining that the agency couldn't really help people find jobs. It wasn't known within the disability community as really helping you find a job. But it was known as helping you be able to get different things that you needed. Certainly, from my vantage point the agency might not have given me everything that I needed help with, but they certainly made it possible for me to do things that would have been much more difficult for me to do by myself. It would have been a lot of money for my parents to have to pay.

I actually also qualified for student aid. I had a student aid job in the summers. But that was difficult. I had to kind of fight to get that program.


Brown

You had to fight to get that program, or Rehab did?


Heumann

No, I got that on my own.


Brown

And that wasn't Rehab related?


Heumann

No.


Brown

That was through your college?


Heumann

Right.


Brown

We'll come back to that. Is there anything else you'd like to say about early experiences with Rehab before we move on?


Heumann

It was unfortunate that they were not more advocacy oriented and that the agency didn't really work with you on helping you to look for the kinds of jobs that you'd be interested in. But the bottom line is if I hadn't gotten their money along the way, I don't know what I would have done. I was lucky that I was able to make the system work for myself and that Rehab gave me the money to get the credentials I needed.


108

I think it was better then than it is today. Rehab in most states doesn't pay for you to go to a private school. In many cases, it doesn't necessarily pay if you're going to higher education, although in my current job that's one thing that we're working on changing because it's such an important thing, going on to higher education.

But it served me well. With all its problems, it served me well.


Thoughts on disability as a child

Brown

Did you think much about disability as a child? How did you think about it?


Heumann

What do you define as a child?


Brown

I would say up to high school, but you can define it however you want.


Heumann

I probably started thinking about disability when I was very young because how could I not have thought about it in some, at the very least, abstract way? You know, getting sick and leaving home and being in the hospital. Certainly, that, in and of itself, you know, what's wrong? Why can't I be home? Then when I came out of the hospital, I couldn't do the same things as I had done before, and now I had a brother. So I had to be thinking about it, however you think about things when you're two and three.

But I remember when I was four, my parents had me go to the Rusk Institute. I think it was for three months. I would stay there from Monday through Friday. They would bring me back Monday morning and visit me on Wednesday and take me home Friday night. That was the first time I was ever around other disabled people. Actually, I frequently say the first time was when I was in special ed class, but I realize that's not true. It was when I was in the rehab hospital.

I remember a little bit of, like, flirting with the guys in the wheelchairs. But I was younger. Most of the people were older.


Brown

Were they all polio?


Heumann

I have no idea. I don't think so. No, that would have been through the early fifties, so I assume they had some spinal cord injured people there, and others. I don't remember per se. But there were big guys in wheelchairs. Rusk, I think, was known for doing more than polio.

So I remember that. I remember falling out of my wheelchair.


Brown

At Rusk?


Heumann

At Rusk, because they didn't tie me in, and I didn't have good balance. I remember my parents being upset that I had fallen.


Brown

Did you get hurt?



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Heumann

I hurt my chin. I didn't like having to come back on Monday mornings. I used to cry a lot. That's about all I remember about that.

You know, again, when I was supposed to go to school when I was five, I couldn't go to school because I was in a wheelchair. That clearly had an effect on me, even though, again, it really feels to me like it was more not understanding what was happening, just that things happened and that other things didn't happen.


Reactions towards people's view of her

Heumann

It wasn't until I was eight or nine years old that I remember reacting to people's views of me. I had gone with a friend who was pushing my wheelchair up the block to go to the stores, and some kid came over and said, "What's the matter with you? Are you sick?" I remember, like, wanting to cry. I think that was, like, the first time that I remember having some kind of an emotional reaction around my disability because of how people were reacting to me.

It was kind of curious because years later I had met this woman named Karen Paulsen, who was a researcher in Stockholm. She had done some studies which showed that disabled children started realizing that they had a disability around the ages of eight or nine. I remember thinking about that and going, "Oh, wow, that's when it happened to me also."

The older I got, the more the issues were around disability because the more I was aware of needing help and not necessarily getting it or not necessarily getting it in a way that people wanted to be giving it--so a more conscious feeling because, again, I'm sure it was going on earlier--but a more conscious feeling of having to weigh and measure what I asked for, when I asked for it, how I asked for it, how needing assistance had to be measured up.

I define it as--there are five things that you would like, and you can't do them all by yourself--so having to prioritize things that others wouldn't need to prioritize at all. You would just do it, because they're not big things.


Peer acceptance harder with teen years

Brown

You were saying that it got harder as you got older and there were things like birthday parties, and you mentioned people carrying you into their houses. Did people stop inviting you to birthday parties?


Heumann

Oh, no.


Brown

Or as soon as you got there, it would be awkward because there were other kids who didn't know you that would treat you differently?



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Heumann

Right. I mean, I'm still friends with people I grew up with in that neighborhood, so no one didn't invite me because of my disability.


Brown

What did you mean when you said it got harder when you got older?


Heumann

Well, because there would be kids other than from the neighborhood who would come to the parties. They didn't treat me the same way, so I felt more uncomfortable being, like, the only disabled person in the group and was obviously self-conscious. Then, when we would play games like spin the tail on the donkey or--not spin the tail on the donkey.


Brown

Spin the bottle?


Heumann

Spin the bottle and post office. That was always very uncomfortable for me. I mean, it probably would have been uncomfortable for me even if I didn't have a disability because I didn't know all the guys in the group. But I definitely felt like the guys were not, like, looking at me as someone they wanted to spin the bottle with or wanted to do post office with. It was kind of like this obligation. The bottle came to me, so okay. Or we had to go out into the other room. Okay. I never felt in any way, shape, or form threatened by what was going on because it always felt like they were out of here [chuckling].

When I went to religious school that wasn't a problem, in the beginning, because it was made up mainly of my cousins. So when I was in the neighborhood, it was my family. I mean, there were times when relatives--you got a feeling that people were saying things. But it was different.

[whispering] [tape interruption]


Telephone compensates for lack of mobility


[Tape 8-1, Side B]
Heumann

I stayed friends with people from elementary school. I'm trying to think about friends that I would visit. I have friends from elementary school, who went to another high school or were younger than I was so didn't go to high school when I went there. But, like, my friend Frieda, who was my best friend. She didn't go to the high school I went to. She was younger than I was. But she also didn't go to the same high school. But Frieda I was very good friends with. I would talk with her a lot on the phone.

That was the other thing that I started saying earlier, that the phone became a more important part of my life. Everybody kind of always laughs about it, but because I couldn't travel and my friends couldn't get to me, it was the only way that we could communicate with each other. We were kind of isolated in the middle of what was going on as we got older because we couldn't go in the car and we couldn't go in the bus and we couldn't as easily just go visit our friends any longer because their houses weren't accessible, and you were bigger, so it wasn't easy just to pick me up and bring me inside. It was a bigger ordeal of needing to have more people around who could help me get the wheelchair up.


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[tape interruption]


Society's reactions

Heumann

When we went to camp, where we had more time because we would be there for weeks at a time, was when I also started talking with kids about how we felt about being isolated and how we felt about people treating us differently, looking at us differently, not talking to us but talking--

I mean, I'm going to divert for a second. This not talking to you is like--I'm fifty-one years old. Today, I'm going to a meeting at the Blair House, with another assistant secretary. They had two doors and they opened one and they needed to open the other one, and they were having difficulty. First the guy looked at me, and then he looked to Norma, and he said, "Can you help her get to where she has to be going?" I said, "She can help herself get to where she has to be going. Just tell her where to go."


Brown

[chuckling]


Heumann

It will never stop. It is that kind of thing which will never stop. But in earlier years, it was really, like, processing it and recognizing that it wasn't just me. It was that other people felt the same thing. As we slowly recognized that we each had similar feelings around issues. Some of those feelings were also that it made us sad, it made us angry, and so it was what do you do about it? Or feeling angry at not being able to get the help that you needed. Sometimes feeling that because I needed to ask for a lot of things, that there would be tension between my brothers and myself. Or my brothers would be expected to do things for me that I would have been able to do by myself, and they didn't necessarily want to do it. That's something that still goes on, even when I'm an adult. There's always a combination, like, with family, of sibling rivalry and those normal things, but then there are the additional things that go on.


Smoking an equalizer

Heumann

I started smoking when I was twelve or thirteen. I started smoking because one of my girlfriends from the neighborhood was older than I was, a year or two older, and so I would hang out with her friends because she would push me up to the avenue. I mean, "hang out" was too much of a term. I didn't hang out with her friends. I hung out with her friends if she pushed me to where they were going.

So in high school I would smoke in the bathroom sometimes, even though you clearly weren't supposed to be smoking.


Brown

Did your parents know you were smoking?


Heumann

No. My father smoked, so he wouldn't have smelled it.



112
Brown

Did your mother?


Heumann

No, because my father smoked. My mother used to smoke. They never asked me if I was smoking that I recall, in high school. So I kind of don't think they did.


Brown

Was it a cool thing to do? Is that why you were doing it?


Heumann

Yes. It was to be accepted by the group, to show that I could do what they did. To me, it was really, like, I needed to show them that I could do the same things they could do. It was a different kind of peer pressure. I mean, it was, of course, in the end, peer pressure. But it wasn't feeling like somebody would say to me I was a wuss if I didn't do it. It was more like I wanted to show them that I could do it because there were so many other things I couldn't show them I could do.

I think I felt cool when I was smoking. You could think about being one of the ads and blowing rings and doing different things like that. A lot of it really did have to do with this, showing them that you really could do things and maybe blow a better ring than they could blow.


Parents fight for school admissions

Heumann

My mother was definitely not into conflict around certain things. She definitely was into conflict around things like my not getting into school. She didn't mind the conflict on that. But other things, like bathrooms aren't accessible, you just don't drink. The bathroom is upstairs? You just don't do it. So it was this kind of repress yourself.

But, on the other hand, then, as I began to talk more about the problems, that's kind of the next level because my parents were involved on the issues of getting me in school and trying to get me a good education, and I needed to finish high school, I needed to go to college. Those were all things that were always expected of me. You should do another interview with my mother. Did she talk about what her expectations were for me?


Brown

Not that I remember.


Heumann

See, what I would really like to know from her is what her expectations were, how the family reacted to me, and how she reacted to me, and how she worked with other parents. That was very much a part of what let me go on to high school. If my mother hadn't organized with these parents, I would have been on home instruction because that's what was happening at that time.


Questioning environmental barriers in early years

Brown

You've talked some about how you felt about the level of assistance that you needed and the sort of prioritizing of needs and manipulation and how to get your needs met in the


113
best way and what can you not get done. How did you feel about strangers helping you? I guess my question is being carried up steps to go to a birthday party.


Heumann

It didn't bother me if it was people in my neighborhood or my father or family because it just was. I think when I began to really think about it as a problem was when it became more of a problem to do it. In other words, when I was young, it wasn't a big deal for somebody to pick me up and bring me inside. When I became older, it isolated me--didn't let me get into somebody's house, didn't let me do things--then, of course, I began to slowly start asking questions. Well, why do we need these steps, and why can't I get across the street easily?


Brown

When did that start? Do you have any sense of it? Or was this a process?


Heumann

A process that happened. As I got older and began to be able to, I think, make judgments and look at things and define what a problem was and start analyzing it. I began to look at issues of authority--I think to be somewhat comparative of where--my peers were becoming more independent as they got older, I wasn't becoming more independent. But I was, of course, psychologically becoming more independent. That's why things like camp were so very important, because that was the time when I could be away with my friends and do more exploring and be less limited by my disability because the camp was designed for disabled kids.

My first boyfriend was from elementary school. My first boyfriend in elementary school actually was a nondisabled kid from upstairs, Barry Foster. There's something very weird happened. I can't remember, but it was strange.

In the beginning, when Barry was my boyfriend, I remember being very proud: I had a nondisabled boyfriend.


Brown

How old were you then?


Heumann

Fifth grade. Yes, fifth grade. I started going to school there in the fourth grade, the middle of the fourth grade. The school went through the sixth grade, but the disabled kids there stayed up to twenty-one years old.


Repressing anger

Heumann

I learned also, through all these years, to kind of repress my different types of anger. I think over time repressing my anger about how I felt when I couldn't do certain things, or I couldn't get what I needed from somebody else to do it. It was like you didn't want people to be angry at you, in addition to everything else that you were having to balance.

But, over time, I was able to get angry at the environment and how people responded to me and other friends of mine. I think the more I was in high school--even though high school itself was--I think most people remember a lot about high school.


Brown

Most people do?



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Heumann

I think so. I don't remember. I do, certainly, remember; but when I think about high school, I think about being afraid of being in the classes with the nondisabled kids. Always feeling uncomfortable. Having to go to the bathroom and not being able to get help to go to the bathroom. I remember once I had to go to the bathroom really badly, and there was no one who could help me, and I wet my pants. I remember sitting in the classroom totally freaked out because it had gone onto the floor, and hoping that nobody would notice what had happened until I was gone and the next class was there, and then nobody would know who it was from. Those kinds of things.

In high school at a certain point I began to become, like, class president for my homeroom. It was always these strange things. Like, it was coming back into the homeroom and feeling comfortable with the kids there; going out into the regular hallway and into the regular classrooms and not feeling comfortable with people there.

Well, every year there was a performance [a Sing]. I did it for a couple of years. Now, I began when I was fifteen to take singing classes. When I was at camp, I always had big roles, depending on my age. The older I got, the more of a lead I had in program[s]. When I was at religious school, I had leads, and when I was in elementary school I would play the lead. But when I was in high school, I'd be in chorus. I don't ever remember auditioning for a part. I was so horrified to even audition for sing, just to be in the chorus.

It had to do with my emotions and my feelings through childhood.


Brown

I was asking how you felt about assistants, getting carried up the steps.


Heumann

Yes. As I said, I just began to realize that it began to become a problem. That's how things kind of formulated themselves, as a problem. It wasn't a problem before; it was a problem now.


Descriptive terminology

Brown

I know you use the term "disabled" to describe yourself now. When you were growing up, how did you think of yourself? What word did you use, or words did you use to describe yourself--either in your own mind or to other people?



[Tape 8-2, Side A]
Heumann

Well, I used the word "handicapped" until the seventies, early seventies. Then in the early seventies I was reading maybe this magazine Accent on Living, because my father got that for years. They still get it. My mom still gets it. I read someplace--as I said, maybe there--that people in Scandinavia were using the word "disabled." I thought that was a great idea-this was as I was getting older--in part because disabled people were deciding what they were going to call themselves. It didn't matter if it was "antelope" or "shoehorn" or [chuckling] something. It was an expression of something. There was a whole handicapped--hand in cap, a beggar's term--it was analytical. There were all kinds of things going on, and I thought this is very interesting.


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In college I had gotten much more political, over time.

[tape interruption]


Brown

So basically you called yourself "handicapped" until college.


Heumann

But I knew other people who were using the word "cripple." "Cripple" is definitely a word that some people used.


Brown

About themselves?


Heumann

I don't remember that as much as other people calling us cripples, or crippled by. The same old words there: crippled, crippled by--I guess other words--bound to. But I used handicapped.


Concept of inclusiveness

Brown

Who is meant by the term "disabled" I think has changed a lot or at least in theory it has changed, who is included in that terminology. In your early adult years--and by that I mean high school and college--when you used or heard the term "disabled," who did you think of? People with what types of disabilities did you think of as being included in that term?


Heumann

People I knew. Like, when I was in camp I met some blind people and deaf people. I didn't meet them in elementary school or high school. So they were part of that group. People who were mentally retarded were part of that group, because I went to school with people who were mentally retarded, in elementary school. People with spinal cord injuries, because I knew veterans, and people with muscular dystrophy, people I knew. I never felt that one group was not a part of it. I didn't know people at that time who were defined as having emotional disabilities.

But for me it was never a difficult thing to include more people. My concept always was--as I got older and began to get exposed to more and more people--it was clear that we had similar problems. It was who did I feel comfortable with, outside of family and friends. Usually, I'd feel comfortable with anybody I felt had a disability, whether I knew them or not. That wasn't true for nondisabled people. There I had to figure out how to feel comfortable with them.

So that's who.


Brown

Do you think the movement as a whole felt that?


Heumann

It wasn't a movement at that time.


Brown

Well, not movement, but people in the seventies in Sweden--


Heumann

Oh, in the seventies.



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Brown

--who were nondisabled. I'm thinking particularly of programs that were called physically disabled students programs, so obviously people were thinking primarily of physical disability. I haven't been clear if people included deaf and blind in that or not. It seems that sometimes they do and sometimes they don't.


Heumann

In Berkeley, they definitely included the blind because they were always, from the beginning, part of things.


Brown

But it seems from what I've read that it has been pretty much wheelchair users and blind people are who were generally thought of to be meant by that term.


Heumann

Well, but when we started our groups in New York City in the seventies, the deaf were involved. I started working with the deaf groups before '75, '73. As I said, for me it was because I had this experience. I went to this camp where there were three deaf young women in our bunks. I don't know how that happened. There were a couple of blind people there.

In my elementary school and high school, no. There were no deaf people; there were no blind people. As I said, in high school, I don't remember anyone you would define as mentally retarded people. In elementary school, if they had multiple disabilities, then there would be some mentally retarded people there.

As we started getting together in the sixties, kind of organizing, then it was pretty clear that the more the merrier, on a certain level. The discussion that we had was more around how disabled you really were. If you had a less significant disability, you could do more than if you had a more significant disability. It wasn't that you didn't belong, but you could do more.


Awareness of disability hierarchy

Brown

Their issues would be different. A disability hierarchy.

[tape interruption]


Heumann

I think it gets defined sometimes as the disabled community's hierarchy, but the truth of the matter is it's the nondisabled world's hierarchy that we get sucked into, for various reasons. You're more acceptable, I think, to nondisabled people if they can easily understand your language. If they can easily understand your language but you're a quad, you have the problem that you're a quad but they can understand you. But if you have cerebral palsy and you're a quad, then people have difficulty understanding you, and you're a quad. I think we have maybe accepted that because of our interest in being acceptable, but I don't think it's a hierarchy generated by disabled people.


Brown

It's internalized.


Heumann

Yes.



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Brown

When you're out in the world and you see somebody you don't know who has an apparent disability, I've noticed that you almost always say hello or stop and talk to them. Is that something that you've always done?


Heumann

As long as I can remember.


Brown

What's that about for you?


Heumann

Just because I feel more of an affinity, and I think it's making eye contact. I'm always curious to see how people respond--not to me as Judy--but sometimes people feel really happy that you said hello to them. They may never think of themselves as a disabled person. There are, like, different reactions. People who are like myself, where you say hello, it's like hi. It's just a nice thing to do. People who you say hello to and ignore you and are not deaf. People who you say hello to who have a disability and are generally excited about the fact that you said hello to them or made eye contact with them. I kind of get this feeling like there's a connection that maybe the person they're with doesn't get at all. But there's just this connection, or non-connection, depending. But there's much more connection than disconnection. I would say out of every hundred people I say hello to, most of them will say hello back. Only a few of them will completely ignore me.


Brown

Do you feel that you have a stronger connection with other people who had polio? Is that true for you? I know for some people it's true for them.


Heumann

I don't know. I mean, I joke about it, but the truth was I didn't know a lot of polios when I was younger. I was the first polio kid in my elementary school. I don't think I really knew polios, really, until I was in camp in high school. In high school there were more polios, at camp. But polios are the best, of course!

Again, it's an area that you understand, so you can talk. I mean, I can't talk to all polios the same way. Most polios had polio when they were younger, so they don't really remember much about it. Then, when you meet a polio who was disabled when they were older, that's very interesting because they can tell you things that you had no idea about.


Brown

Like what?


Heumann

Experiences in the hospital. I heard from someone that there was a lot of crying and screaming that went on because it was painful in the beginning, for some people. I'm sure because kids were away from their families. It was something that happened very quickly, and we were in isolation, and so families couldn't necessarily come and see the kids, for whatever reason. But I definitely joke about polios' being the best, and every opportunity I can, I do it. Because we are. [laughter]



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VII. College Experiences: Developing Self-Confidence and Political Awareness; Preparing for Teaching Career

Developing political awareness and activism


[Interview 7: November 11, 1998] [Tape 9, Side A]
Brown

This is an interview with Judith Heumann on November 11, 1998. The interviewer is Susan Brown. We're having the interview in her home on Connecticut Avenue in Washington, D.C.

When and how did your political interests develop?


Heumann

Okay. When and how did my political interests develop? I think my political interests developed over the course of my life. My family was politically knowledgeable, not so much politically active, as in being involved in any kind of political parties, but we read lots of newspapers and magazines and watched the news and always had discussions about things that were going on. It was just part of the environment that I grew up in.


Brown

What newspapers and magazines?


Heumann

New York Times, Daily News, New York Post and other papers that I don't remember because they're since defunct. Just lots of different types of magazines. You know, the more moderate political magazines. So we got Newsweek and Time magazine and National Geographic and Reader's Digest, magazines like that. We didn't watch a lot of television when we were growing up. My father and mother read. My father read more of the military-type things. He was always very interested in Second World War, and my brother does a lot of reading in that area.

My political development was also grounded in the fact that my parents were immigrants from Germany, and the impact of growing up in Germany at the end of the First World War--you know, merging into the [Adolf] Hitler regime--definitely influenced my political thinking. My father was very into remembering the past and very critical of the lack of historical knowledge that people have in the United States. His feeling was that


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history repeats itself, and so one's failure to know what has happened in the past because you believe that it's not going to happen in the future is naive and stupid [chuckling].

I think for myself, I started getting involved in kind of electoral politics of sorts when I was in elementary school--class president in my special ed class--and in high school, for my homeroom I was elected to some position. Then, when I went to college, there was a big change for me because I lived away from home, although it was in Brooklyn.

When I went to college, because it was this transition, it wasn't just going from high school to college; it was, like, really changing environments as a disabled person. It was leaving my family's home where, although I didn't have any personal assistant services or anything like that formally, I had my mother. I didn't have a motorized wheelchair, but I lived in an environment where I could get around in because it was small.


Membership in sorority and political campaign

Heumann

But I was going to college, and the last summer that I was at camp, which was my senior year of college, I met a woman who was a member of a sorority.


Brown

Your senior year of college?


Heumann

My senior year of high school, sorry. My senior year of high school. Who was a member of a sorority, the same sorority that we had on my campus, Delta Phi Epsilon. She encouraged me to go out for the sorority. Now, I was the first in my immediate family to go to college, so I didn't know really what a sorority was. She wrote a letter of support for me, so they rushed me. It was a good thing that I did it, skipping what you think about sororities and fraternities.

What was good for me was that it made me leave my dorm room when I wasn't in classes because there were obligations that I had. As a pledge, I had to go to meetings, I had to sit in the cafeteria and do things for the members of the sorority. So it allowed me to be out and start talking to people and meeting people, even though I was still--this is before I had my motorized wheelchair, and I was much more shy because I couldn't do a lot of things by myself--feeling good about the way I looked and the way I was moving. I always felt different.

The sororities and the fraternities on the campus that I went to ran the student government for the first two years that I was there, although they had run it before, but in my sophomore year I decided I was going to run for junior class secretary. It was in the middle of this transition that was going on on campus between the sororities and fraternities and more of the political activists taking over control of the student government. It was the Vietnam War era, and my college campus was involved in the Vietnam War activities.

Everything for me was new because everything was, like, run by nondisabled people, so any kind of meetings or anything I did I was never just, like, really going there for a political purpose. I couldn't just be there for that. I was always somewhat conscious of


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being with all these people I didn't know, and being the only disabled person or maybe one other disabled person.

Anyway, I ran for student government, and I was supported by the sororities and the fraternities. I ran against this woman, Janet somebody. God, I don't why I can't remember her name. She won. She beat me by, like, seven or eight votes. I remember going around and talking to people, "Did you vote? Did you vote?" There were more than seven people that I knew who hadn't voted, so I was very upset [chuckling].

She quit after the first semester of our junior year. She quit the position. She didn't want to do it. I was going in the hospital at that time to get my spinal fusion, but I ran for student government anyway. My friends ran my campaign, the special election, and I won. I participated in all the Student Council meetings through something called an Executone, which is how I went to class. It's from the phone company. It's like an intercom system.


Brown

How you went to your classes in college?


Heumann

When I had my surgery.


Brown

Oh, okay. But generally, when you weren't in the hospital or getting surgery, you went--


Heumann

Yes. So when I ran for student government, friends ran the election for me. I wasn't there. When I served my first term, I wasn't physically in school. I was doing meetings over the Executone. Then people would come to my house for extra meetings. I was involved with a lot of different things: people from the sorority and fraternity, some of the people in the antiwar movement. We also had other activities going on on campus. God, I'm trying to remember when this was. We had a student strike.


Involvement in tuition strike

Brown

The tuition strike?


Heumann

Yes.


Brown

I was going to get into that a little bit more later.


Heumann

Well, it's all part of the political--


Brown

The same stuff. Yes, I understand. Was it regarding tuition increases?


Heumann

Yes.


Brown

Were there other kinds of actions that went on? Were there antiwar demonstrations? Tell me a little bit about what the context was as far as you were concerned.


Heumann

This was '65 to '69. Yes, there were some antiwar activities that were going on.



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Brown

What about civil rights stuff?


Heumann

Not a lot that I remember.


Brown

Did people know about it? Were they aware of issues?


Heumann

Oh, sure. People were aware of what was going on in other parts of the country. Now remember, when Dr. [Martin Luther] King [Jr.] was killed and when Bobby [Robert F.] Kennedy was killed, I was at home, recuperating from the surgeries, so I don't exactly know if anything went on on campus. But I don't really recall. The school was mainly a white school. There were minority students there, but at that point it was mainly a white school.


Brown

In terms of antiwar demonstrations?


Heumann

There were antiwar activities going on, but this one particular strike that went on was a very big deal at the campus. There were strikes going on at Columbia [University]. Was there a tuition strike at Columbia also? I can't remember all the details, to be honest. But I remember that LIU [Long Island University] was a less well-known school than Columbia. There were activities going on at our school that preceded activities going on at some of the more prestigious universities, but the other universities have gotten more coverage because they were more well-known schools.

But I was very involved with the strike with the tuition.


Brown

Was it led by the student government?


Heumann

Yes, it was led by the student government, I believe, yes.


Brown

Did you have faculty support?


Heumann

A lot of faculty support.


Brown

So basically just no one went to class, professors didn't have classes? Tell me what happened.


Heumann

There were classes that were canceled. I'm trying to remember if it was my senior year that we had this strike. You know, I can't remember now. I was out of school from January till September. It must have been my junior year. No, it must have been my sophomore year. I'm sorry. I can't remember. We have to look up the year. But I remember that it was a strike that had a lot of support from the cross-section of students at the university, both the students who were left, politically leaning, and the students who were involved in the sorority and fraternity. It was a commuter campus, so a lot of the students weren't necessarily very involved in any of the politics. But it was a very big deal to be having this strike around the tuition.

I guess that was the first time that I was involved in blocking entrances to doors and trying to keep people out of the building. We had a march across the Brooklyn Bridge to City Hall to protest the tuition raise. The Brooklyn Bridge at that time wasn't accessible.


123

There were lots of people who went on that march. My friends were pushing me, and I would just get lifted up when we got to the stairs.


Participant in political organizations

Heumann

I went to some SDS meetings. They were kind of weird to me. Not the Society for Disability Studies!


Brown

The Students for a Democratic Society.


Heumann

Students for a Democratic Society, right. I could never quite get into the meetings.


Brown

Because?


Heumann

I don't know. Like I said, it was the weirder students on campus who participated in the meetings. I was interested in the discussions. Some of it was a little bit too vitriolic and too dogmatic. I didn't feel comfortable in speaking. It kind of felt more like a cell meeting, where I was being told what I was supposed to be thinking. But anyway, it was a good experience to do it.


Antiwar demonstrations and conflict with father

Heumann

I was involved in some of the antiwar activities. There, I was as a participant. I certainly was involved in letting people know about things that were happening. But it was more as a participant in activities. It was difficult for me to participate in antiwar activities because of my father.


Brown

I was wondering about that. Was he a supporter of the war? Where would you characterize his stand on it?


Heumann

He was a supporter of the United States, and he was very angry with the antiwar movement. He also was angry at the military because he felt that they weren't going in and doing the job the right way. He felt that the criticisms that were going on were hindering the ability of the military to go in and just do what they had to do. So that was a problem.

I remember when I participated in any of the antiwar activities, feeling guilty that I was doing it, that I was somehow betraying my father. On the other hand, feeling like--not that I completely disagreed with everything that he was saying--but that I felt that what was going on was wrong. I didn't feel like I was getting enough information about why we were doing what we were doing, so I was feeling very divided.

I think also the backdrop of what had gone on in the 1930s and my father's continually talking about--and my uncles and others--how people ignored what was happening and


124
were influenced by the wrong side and being influenced the wrong way, so it was a confusing time for me.

I had a pen pal who was a soldier for a while because I thought I had to, for myself, say I didn't have anything against the guys who were in the military because they had no choice, by and large, so why would I be disrespectful of the men? It was the war and the machine of the war that I disapproved of.

So I guess in college what I would say about my politics is that it was the first time that I was really ferreting out for myself what politics was all about, and the different types of politics that there were. There was the college campus student government, the antiwar movement, and then, at the same time, there was my moving through school with an interest in being a teacher, knowing that I probably wasn't going to be able to become a teacher. I would define that as politics also because that's when I started realizing that I had to make some decisions myself about things that I wanted in my life. To start planning for, strategically, what I was going to do if this happened or that happened.

So it was while I was in college, I guess, in my sophomore year that I called the ACLU [American Civil Liberties Union] to tell them that I was interested in becoming a teacher and that I knew of no people who had been hired as teachers who used wheelchairs, and it was my assumption that I wasn't going to get the job because of that. They told me that if a problem occurred, I should call them then, that there wasn't anything to do about it now.

Then I was involved with some people on getting the Disabled Students Program together at Long Island University. I was involved in trying to get the campus more accessible, although not very successfully while I was there.


Establishment of the Disabled Students Program-LIU, 1968-69

Brown

When did the DSP get started?


Heumann

The Disabled Students Program? I would say '68 or '69.


Brown

What happened? Were you a big part of that?


Heumann

God, some of these things I just don't remember well enough. To me, some of these things are just kind of like a stream of things that just happened. Marilyn Saviola and a bunch of us were involved in basically, I think, talking with the administrators there about how we needed to have some kind of a program. Ted [Theodore] Childs was--you could call him if you want to get more--I mean, the two people I would think would be interesting to talk to would be Theodore Childs. He was the first director of the Disabled Students Program.


Brown

He was already at Long Island University?


Heumann

I think so, yes.


Brown

Do you know what he was doing?



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Heumann

He was a professor there.


Brown

In what department?


Heumann

Phys Ed. He has been very active in the NAACP [National Association for the Advancement of Colored People]. I think so. He was a physical therapist by training. I can't remember if he was working with the sports people, which might make sense that he was doing some of that. He eventually went on to get his doctorate in special ed. But he was the first director of the Disabled Students Program.


Brown

Was it something that he was instrumental in creating?


Heumann

I think he was involved in it, too. It really started taking off more after I was out of school, but it was being developed while I was in school.


Brown

So was it an actual physical place?


Heumann

Yes.


Brown

Your last year that you were there?


Heumann

I believe it was, yes. I worked there. God, I'm never going to remember all these little time lines. Yes, and had a small staff. He and Gay somebody or other [Harvin]. I think I worked there part-time for a while. One vivid event that I remember with Dr. Childs was that there was an incident where a student was told by one of the professors that he didn't want [the student] in his class because [he] needed a tape recorder, and he didn't want his classes taped because those were his words, and he didn't want them used inappropriately.

Childs said basically, he was a professor on campus, and if he didn't feel comfortable in letting somebody use a tape recorder who had been accepted to the university, then he shouldn't be teaching at the school. I remember that. It was, like, kind of a very powerful thing for me to hear him say that.


Brown

Why was it such a powerful thing?


Heumann

Because he was making his statement, saying that people make choices in their life and you can't discriminate against somebody because you don't want them to have a tape recorder in your classroom. It was a stand against discrimination. He was strong on issues around discrimination, as a black man. At any rate, politically I think all those things were going on for me.

On a certain level, college was like high school for me in my being able to develop in ways that I think high school students were able to do more of. Politics for me also means the ability to be self-expressive and to express a view. Actually, there was a series of events that went on when I was at school. When I was entering my second year of school, there was an incident with the woman in charge of the dormitory who decided that she didn't want me to be there. Did we talk about this already? So you don't need it again.


Brown

Getting back to DSP for a minute, what kinds of services did they provide when you were there? Did you use their services?



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Heumann

They helped students with getting classes. It wasn't anything like the program in California. It still isn't. They don't have a wheelchair repair program now; they never did. It was kind of a more traditional program as far as how they went through recruitment and helping do orientation and helping students get books and if they were having problems dealing with those kinds of problems. I assume over time they've got more testing and extended time and things like that, which weren't really an issue at that time.


Brown

So it wasn't attendant services or anything like that?


Heumann

Oh, no, no. I was the only one at the university, that I was aware of, living on campus, who used attendant services. Actually, I think it was Dr. Childs that really got that program going, the Executone program. There were students from Goldwater Memorial Hospital who were coming to school at LIU. It was because of the Executone program.


Weekend at Howard University

Brown

In college, did you study any political theorists or theory?


Heumann

I was reading some of King's work, I think. Yes, you know what? I answered you wrong before. Remember you asked me if there were any civil rights activities that were going on? Yes. I mean, there were different things that were happening that I don't think looked like what was going on in schools in the eighties and the nineties. Things were developing then. But actually, now that I think about it, there were a number of things that were happening.

One is some of us had started an after-school program in the neighborhood. The neighborhood that we lived in was a poor neighborhood, and there had been a lot of criticism by students on the campus that we were kind of a fenced-in school and didn't do any work in the community. So a group of three or four of us--Tony Melli, myself, a couple of other students--started an after-school program, where we worked at the Fort Greene Community Center, doing tutoring and other kinds of mentoring work.

After the riots in D.C., Howard University set up weekend programs. You had to apply and be selected, and you had to read a whole bunch of books: Malcolm X and I don't remember the others. There might have been a King book, an X book. We went down for a weekend, basically to have an intensive on racism. It was at Howard. Lots of discussions in this small group of eight or ten people.


Brown

The eight or ten people were all from Long Island University?


Heumann

I don't remember that.


Brown

But there were about that many from Long Island University? I mean, you said there were a certain number of people that got selected.


Heumann

There were some students from Long Island University. I can't say they were all from Long Island University. I don't remember.



127
Brown

Was it a regional meeting or people from all over the country? You don't remember.


Heumann

I don't know. All I remember was the weekend and that it was the first time that I had ever been involved in a weekend discussion on racism. I remember we drove through the parts of D.C. that had been burned down. They were talking with us about oppression and how the fires had started and ended, basically still within the confines of the poor neighborhoods. I think all of that was important for me because it just kept expanding my horizon and issues to be looking at and ways to be viewing things, discussions that I hadn't had before.



[Tape 9, Side B]
Heumann

We have Tony Melli. Liked him a lot. I haven't seen him practically since I graduated, but I think we did a lot of our own work on our view of racism and our view of oppression and basic inequities by trying to get involved with the different programs that we set up, that others were setting up. Dr. Childs at that time was beginning to get involved with the TRIO [U.S. Department of Education outreach education grants] program. I think we got a TRIO grant pretty early on.


DSP a Political Entity

Heumann

I left New York in '73. After I left the dorm, I went across the street. The university owned three apartment buildings, and I rented an apartment, so I continued to be involved. I know you want to get into questions about work, but all of this did relate because at some point--I guess, one summer when I was in college--two summers when I was in college, I worked at the William Reed Day Center for Senior Citizens, which was in Bedford-Stuyvesant, I think, in Brooklyn. A lot of my work was really gravitating towards working with minority children and adults. It wasn't possible for me at that point to be working with disabled kids or adults. They weren't kind of like there.

But, on the other hand, I mean, I was friends with disabled students on campus. We were getting involved in lots of different things--the Disabled Students Program and other activities.


Brown

About how many people with disabilities were there on campus? Do you have an estimate?


Heumann

I'd say fifty, but it could have been more.


Brown

What kinds of disabilities?


Heumann

I don't remember there being any deaf students. I don't even remember there being any blind students. Physically disabled students. One of the reasons why I had applied there was because the school was literally on one block. You didn't have to cross the street. So there were students who used wheelchairs, crutches and braces, had mobility disabilities. I'm sure there were students with learning disabilities and things, but there wasn't anything at that time.



128
Brown

Were you primarily a social group? Did you spend social time together? Did you see yourselves as a political entity at all?


Heumann

Oh, the Disabled Students Program saw itself as a political entity.


Brown

Were most of these people with disabilities involved in the DSP?


Heumann

A number of them were, yes. Linda Slone was another one who was involved. God, I'm trying to remember. Marilyn Saviola. She came to school, and she also was at Goldwater Memorial Hospital. Linda Slone lived in the dorms. She came in after I did.

I was the only disabled person in my sorority. I was the only disabled person on the student government.


Brown

In terms of socializing, did you primarily socialize with other disabled people or not mostly, and could you make any generalizations about them?


Heumann

No, I socialized with disabled and nondisabled people. But socializing was kind of restricted because I didn't have a motorized wheelchair, and I couldn't really get around a lot of places. I had a variety of friends, disabled and nondisabled. I guess it would be fair to say I had more nondisabled friends than I had disabled friends on the university campus, but I also continued to have my friends from off campus, so there I had a number of friends who were disabled, from elementary school.


Brown

In terms of dating, did you date much in college--and mostly disabled, nondisabled?


Heumann

I never dated in college.


Brown

Not at all.


Heumann

Not anybody on the college campus. I never dated anybody in high school. I dated. I didn't date a lot. I still was in camp, when I worked at camp. Was it my first year that I worked at camp? Then my second and third year I worked--that couldn't be right. Yes, it could be. My second and third year I worked at the William Reed Day Center. The fourth year I was out, right? You have three summers: four years, three summers. Yes.


Membership in a disability community

Brown

So in college did you feel you were part of a disability movement or even a disability community?


Heumann

Yes, certainly. Once I was in elementary school, I always felt a part of a movement. Movement is not a word that really applied at that point: group, an affinity. I think those would be more appropriate words at that point. But it evolved into having growing importance.


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I guess also when I was in school I was getting involved with going to meetings in the city, '68, '69, I guess. When did I meet Denise McQuade? God, I've known Denise since the sixties. I don't remember where I met her. Not at college, not in high school. I met her.


Brown

What were the meetings you were going to in the city?


Heumann

Paralyzed Veterans of America. [whispering to herself] '69, '70. Some of us were trying to find our place with an organization because we were recognizing that we needed to have our own group. All these charitable groups weren't cutting it, because we didn't identify with them, nor they with us. We were going to some meetings in the city, working on architectural barriers issues. Eastern Paralyzed Veterans Association was doing work on barrier issues.


Brown

This was while you were still in college, with college friends?


Heumann

It could have been my senior year, somewhere. We started DIA [Disabled In Action] in the spring of--


Brown

May of 1970.


Heumann

Okay. You looked that up?


Brown

I have that.


Heumann

Oh, good. Well, then, this was in '69.


Brown

So you were still in school.


Heumann

My lawsuit was in '70 because we started DIA at the same time.


Brown

In the fall of 1970, when you got your license for teaching?


Heumann

I went to California in '73, right.


Brown

How strong was the sense of community among people with disabilities in college? What was your perception of that?


Heumann

The community wasn't big, but the community was important. We felt the bond, I think very similarly to the way I had felt bonds over the course of years when there were problems and issues. It was important to be able to talk to people about feelings of isolation and anger and frustration and the need to resolve problems, so it was important.

I think really, though, for me, in college, while definitely the disabled students were an important part of my life, I think it's for the first time in my life that I can think of more nondisabled people that I knew and was friends with, outside of my neighborhood. I can't really think in high school about nondisabled people who were really my friends, but in college--I think in part because of the dorm--there are lots of people I'd like to see, even if I haven't seen them in thirty years.


Brown

Who were your closest friends in college?



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Heumann

Linda Slone was a close friend, Lori Bradshaw; Toni Savage; Angela Thompson, who's dead; Lois Finkelstein, Phil, Eli Frazer, Reva Shulman. Oh, there were other people. College roommates. Mimi Kimmel her name was.


Brown

What kinds of things did you--


Heumann

Tonya. You know, that's funny. We studied, we talked, we'd go to restaurant--Junior's--Tony Melli was the guy I really liked a lot. I said that already. What did we do? Well, nothing was very accessible, so we didn't do a lot of stuff. I don't really think about doing it, even going to the movies, because I went home on the weekends, so a lot of what we did was eat our meals together, talk, do extracurricular activities, work on student government, work on the reading program, work on different things like that.

Oh, went to basketball games. Liked basketball games. Went to a lot of basketball games. Wasn't a formal part of the boosters, but would sit with the boosters. [Albie], the basketball player. I was friends with some of the basketball players. My cousin went to school there the same time I did, Herbie. Some of the guys from Tech. You know, I'm trying to remember if there was a black sorority and fraternity. There might have been, on campus. People came to my parents' home for dinner. Yes, I had a lot of friends. Phil Tygiel, that was his name. And Elaine, his wife. I actually saw them again a couple of years ago.


Brown

When did you become aware of activities of disabled students in other parts of the country? Were you still in college?


Heumann

You know, I can't say exactly when I was hearing about disabled students programs. It probably was when I was in college, reading Accent [on Living] or something. But the first ones that I was aware of were Southern Illinois University and University of Missouri at Columbia. There were more formulations of disabled student programs happening in different places: Brooklyn College, NYU [New York University]. I think those are more in the seventies, though. Didn't really start opening up till after college. Then things opened up more.


Attendant services in college

Brown

Tell me a little bit about your attendant services arrangements? Who provided them? Was it usually your actual roommates?


Heumann

The first year I was in school, Toni Savage--who I didn't mention earlier--Toni was my first roommate. She was a friend of Angela Thompson, and Angela Thompson was a friend of mine from before I went to college. She and Toni were in the same sorority, I think. Anyway, Toni was my first attendant. God, I'm trying to remember, she also went to LIU for one year and then she transferred to Barnard, and I think the semester that she helped me out, she might have been attending Barnard and going back and forth between LIU and Barnard.


131

My roommates were not the only ones who provided me with assistance, because the dorm had a step into it, for the bathroom. I didn't need as much help at that point. But Lois and Ilene helped me out, I recall, and Reva.


Brown

So did you usually have only one person actually working for you at a time?


Heumann

My roommate, yes.


Brown

How many hours a week? Do you have any memory?


Heumann

Well, they helped me up in the morning. I could get myself into bed at night, if I had to, so probably no more than two hours a day.


Brown

Any idea what you paid?


Heumann

No, not a clue.


Brown

So basically they helped you get up in the morning and then go to the bathroom and then maneuvering steps?


Heumann

They didn't help me go to the bathroom during the day. They helped me get up in the morning, get dressed and go to the bathroom, do all that stuff; but they didn't help me go to the bathroom during the day.


Brown

How did you do that?


Heumann

Whoever, whatever.


Brown

So you just found someone you could find to help?


Heumann

Right.


Brown

Were your roommates reliable in terms of helping you get up and the services they did provide?


Heumann

Yes.


Brown

The people you paid were pretty reliable?


Heumann

Yes, pretty much. Yes, pretty much.


Brown

So no attendant catastrophes that you can remember.


Heumann

No. There wasn't very much there in the first place, so it was always trying to work around other people, too.



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More on attitudes of nondisabled people

Brown

Did you feel that people treated you differently because of your disability?


Heumann

Yes, sometimes. I had a guy who was on the council with me after we graduated say to me one day that he--it was kind of classic--in the beginning, he didn't think I should have been elected because he didn't think I could do the job. But then, having worked with me, he realized that I could, like anybody else. I remember listening to that and thinking, "God, he's like a book."


Brown

What about professors? Were they ever patronizing or not willing to do what you needed to do? Did you have any resistance, for example, to using the Executone when you needed to do that?


Heumann

No, because the Disabled Students Program was already set up then, as I remember things. Yes, the program was already set up in my junior year. They would have wanted to arrange for people to pick it up and take it to one class and move it to another class. The Executone program was probably one-of-a-kind in the country, and it was great because it really did let the students at Goldwater, who were primarily post-polio, using respirators, go to college.


Brown

You mean unique in terms of going to college? I thought that was how Ed went to high school. You don't remember that story?


Heumann

I thought a teacher came to him.


Brown

I remembered something about him doing something by--it sounded like an intercom system. He didn't use that term.


Heumann

Maybe.


Brown

Were professors ever patronizing because of your disability? Did you have professors who didn't seem to think you could do the work?


Heumann

I--nice music [referring to cuckoo clock]. From our wedding clock.

I don't recall. Nothing stands out.


Brown

What kinds of grades did you get in college? Did you do well in your classes?


Heumann

My cum[ulative average] went up over--I think I graduated with, like, a 3.4 or 3.5. I did reasonably well. I did better in graduate school. For some reason, in graduate school I didn't feel the same kind of fear around tests that I did, but I was always a little overwhelmed in college, trying to do a lot of things. I think I felt much more comfortable than I had on a certain level in high school. But then again, I always had other issues that were going on. Things like how do I get from one place to another because I couldn't push myself, and how was I going to the bathroom. Those are kind of things that were always there.


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Trying to be a part of things. That was more the problem. I don't really recall feeling professors treated me inappropriately, but I recall just never fitting in.

I did go with Toni sometimes to Barnard, actually. Then there was another woman that I had met at the camp that I had gone to, Ann Owens. She was a student a Barnard, so I went up to see Ann sometimes, too.


Brown

Besides your wheelchair, did you use any other assistive devices when you were in college?


Heumann

Maybe a picker-upper sometimes. I used crutches and braces until I had my surgery, but I never walked on campus.


Brown

Did you type papers? You've always been able to type fine, right?


Heumann

Yes. You didn't type papers too much. Did some typing, I guess. But stuff was still done manually. We wrote them. I guess my mom typed papers for me. I don't recall having a typewriter in the dorm. I don't recall a typing place. Some students definitely did have typewriters. I had a typewriter that I had gotten from IBM [International Business Machines]. They had a special program if you had a disability. You could get a refurbished typewriter. But I think it was at my mom's.


More on motorized wheelchair

Brown

You talked in earlier interviews about the incredible impact of getting your first power chair. When exactly did you get it? Do you remember when?


Heumann

I think I was out of college. Because I remember being pushed at graduation. It was just a very important time for me because the motorized wheelchair just gave me a mobility that I'd never had before. Again, it's like this developmental delay [chuckling]: on a certain level, experiencing college as high school. The motorized wheelchair is like experiencing--


Brown

College in some ways.


Heumann

No, much earlier than that. No, the motorized wheelchair let me experience being a kid because it was like me first needing to learn how to use it. Then it was learning how to use it meant not just in the apartment but that I could go out, and I could go out by myself, which I had never done in my life. I could go across the street, and I could begin to make independent decisions--if the environment around me--if I could open the door and close the door, and if I could get to the elevator button and all those different things. But it was still, you know, just learning how to do things that people take totally and completely for granted.

I remember having a fight with my roommate and thinking, "This isn't really a fight, that is of a magnitude for how I'm going to respond. But it's the first time that I can leave my apartment and say that I'm angry and leave in a huff." I remember doing that. I was angry


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about something. I left, slamming the door. I went outside. Now, remember this neighborhood that we lived in was not a very good neighborhood, not one that one should be walking alone at night in.

So here I am, outside, not exactly sure why I was there except that I could be there, and going around the block, saying, "Maybe this isn't the wisest thought." But I remember that was like my first fight. It was great.


Brown

Who paid for the chair?


Heumann

I did.


Brown

The money came from summer jobs?


Heumann

The money came from my work. My father had said--I don't know if they put some money into it--I can't remember that. But definitely some of my money was in it.


Brown

But not Rehab.


Heumann

Not that I remember. I don't think so.


Jobs while a student at Long Island University

Brown

I'd like to move on to some of your jobs that you had while you were in school. What can you remember about your on-campus jobs?


Heumann

You want to do internships and jobs? I had an internship working in the Reading Clinic for part of my requirements for school. Didn't get paid, but it was a job. I had to be there at a certain time and do certain things.


Brown

What did you do at the Reading Clinic?



[Tape 10, Side A]
Heumann

We were assigned children that we worked with, basically around speech pathology issues. Actually, I guess I did one where I had to go do an internship in New York, which is where I worked specifically in speech pathology. At the Reading Clinic, I worked with some young kids on reading issues. Started this after-school program with Tony Melli. We didn't get paid for it, but it was definitely a job because it was a couple of times a week.


Brown

This was at the Fort Greene Community Center?



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Job in LIU president's office

Heumann

Yes. I worked at the president's office. I loved that job.


Brown

Was that the receptionist position that you mentioned?


Heumann

Yes.


Brown

How did you get that position?


Heumann

It was work-study.


Brown

So it was just random that you were assigned to it?


Heumann

I don't know that it was random. I can't remember. It might have been that there were jobs you could look for. I don't think you were completely assigned. It was a job I was interested in.


Brown

What did you do, just standard greeting people who came in?


Heumann

I did phones, I did typing. I think I was also on some committee for him then. It was just a way for me to get exposed. The president was Alexander Aldrich at that time. I was on the student government. That's how I might have gotten it, too. I was in student government then.


Brown

Do you have any idea what your on-campus jobs paid?


Heumann

Minimum wage.


Brown

Any concept of what that was?


Heumann

Probably three-something an hour. Geri Costanza. She was one of the women in the office. She was his personal secretary. There was another woman, an African American woman. I can't remember her name. I loved that job.


Brown

Did that lead into the student liaison position that you had? Or it wasn't the same thing?


Heumann

I guess that's what I was doing. That's when I was on some committees and things like that. Oh, that's what it was called, yes.


Brown

Did you get to meet with the president regularly?


Heumann

Oh, yes. I mean, it wasn't a huge--there were two outer offices and his office, so you saw him all the time. I remember there was a bomb threat on campus, and the FBI [Federal Bureau of Investigation] came. That was a riot. It's funny you remember certain things like as if it was yesterday? These three guys come in in trenchcoats. I'm, like, this is so classic! This is really the FBI. They look like what you expect the FBI to look like.


Brown

This was while you were working in the president's office?



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Heumann

Yes. No, it was a nice office. Again, those were good experiences for me because I was learning and I was able to come into myself a little bit more. Disability was always something that I was interested in and pushing, at the same time that I was also just being able to develop my skills. Not that I was going to be a secretary, but it was like information, which is why I really like doing those kinds of jobs because you knew all the calls that were coming in. That was good. That was a good job.

I worked at the Disabled Students Program, again, kind of receptionist kinds of things.

I graduated in '69. I worked for the Alumni Association.


Brown

Why don't we hold off on when you graduated and just finish up college.


Heumann

I think those were my jobs in college.


Brown

So during college breaks, did you mostly--


Heumann

I'm sorry. During college breaks--


Brown

What did you do?


Heumann

One summer I had this, yes, I think I had said this already. One summer, the first summer I worked at the camp.


Brown

Camp Jened.


Senior citizen center

Heumann

The next two summers I worked at the William Reed Day Center for Senior Citizens. There I was kind of like a social worker.


Brown

Was that a drop-in center, a community center?


Heumann

It was a senior center. It was actually in a building that was a residential building for seniors, in a housing project, in a low-income housing project, which was basically black. There I ran programs, I did intakes. I was a social worker, basically. Also made friends with kids in the neighborhood. There was this one family. They had, like, sixteen kids. My mom would drive me every day and pick me up, and I remember becoming friends with Joey and his brothers and sisters. Actually, I think they came to our house once, a picnic or barbecue or something.

I was always the networker because I was friends with the younger kids. I wanted them to come up to the senior center. Some of the seniors wanted nothing to do with the younger kids, and some of the seniors did. So I was always trying to figure out how we could get the seniors to recognize that if they were feeling vulnerable in the community (which was what was going on), they needed to have allies. To the extent that they didn't want to deal


137
with the kids, that was a problem because then the kids didn't feel connected to them. That was two summers.

Then I graduated and did the Alumni Association work.


Graduation from Long Island University

Brown

What was graduation like?


Heumann

Oh, you know, not great [chuckling]. I had fallen and sprained my knee and my ankle. I didn't like when I didn't have a motorized wheelchair because I was so dependent on people. You know, marching down the aisle and doing all this stuff. I don't remember who the college speaker was. I mean, it was fine. Not a momentous occasion in my life. Not like high school graduation, which was a real bummer.

I remember feeling sad about the fact that I was maybe not going to see some of my friends because there were people that I really liked. But the graduation itself, in spite of my sprained knee and ankle--


Brown

It was at least accessible?


Heumann

It was outside, on the lawn, yes.


Challenges in college

Brown

What would you say were your greatest challenges in college?


Heumann

Balancing all these things, knowing that you're there to study, but also trying to develop myself and having these restrictions. So it was like being able to be doing more than I was able to do before, but not that much more. Again, it was a contained environment, the floor of the dorm. Freshman and sophomore year we lived in rooms; junior and senior year we lived in apartments. I liked the rooms a little bit more because they opened up onto a floor of other rooms. The apartments were already more restricted, you know?

But college--unlike high school where I feel like I kind of held my breath--college at least feels like I began to breathe. In spite of the fact that there--I mean, obviously, the thing of not dating--was always an issue because I just never felt completely the same. I think the other thing about college was that other people were thinking about employment, and that was a real uncertainty for me. So on the one hand, I was studying to be a speech pathologist, knowing that I didn't want to be one.

I guess the other thing that was going on while I was in school is that I was continuing to study voice. My father took me to the city at least once a week, for me to study voice--or


138
my brother. That was something that I was toying around with. People said I had a good voice; I should do more with it.

I was involved in a volunteer hospital group where we would do performances.


Brown

Was that with Cyrus Abbey?


Heumann

Yes. Was that after '69 now?


Brown

I think it might have been after college. I'm not sure when you actually got involved.


Heumann

Right. How did you know that?


Brown

An article.


Heumann

Yes. So that was going on. Then I was having to prepare for taking the teaching exams.


Brown

You were studying for those already your last year of school?


Heumann

We didn't study for that. At that time, you only needed twelve credits, and then there were these three requirements: the medical, the oral, and the physical. No, the medical, the written, and the oral.


Brown

But you didn't study for the written and the oral tests?


Heumann

No. I never knew there was anything you could study from. It was just basically you went and took the test. So I did. But that was after college. Again, no one was really talking to me about career. People thought I was going to be a speech pathologist, although Childs knew that I wanted to be a teacher.


Regrets about college experience

Brown

Do you have any regrets?


Heumann

Of what?


Brown

Of college?


Heumann

Regrets. [pausing a long time] I mean, it would have been good if college would have been more normal for me, like for other students. You know, had I had a motorized wheelchair, I think it would have been a big difference. Had the city been more accessible, it would have made a big difference. So I regret, yet again, not having a more, quote-unquote, "normal" time, normal developmental period.

Sometimes I regret not studying hard enough. Not taking different classes. But basically, no, not a lot.



139
Brown

Anything else you want to say about college before we move on?


Heumann

Well, it was interesting that when I was in college no one ever understood why I was taking the classes I was in teaching. I think one of the other things that did happen in college was because I was so active in the strike and other activities that I did have a level of respect and recognition from teachers on campus who were of that persuasion [chuckling]. That was good. I think it also was an opportunity for me, as I've been saying, to begin to do work in a more integrated setting, although it was still confined.

I liked a number of my classes. I liked good exchanges with the professors. I never felt completely comfortable with my writing. Papers were always difficult for me because I never felt like I got the right instruction in how to write papers.

I guess one thing that changed for me was before I had my surgery, I used to be able to read in bed. I could lay on my stomach and work in bed and read in bed. Once I had my surgery, my spinal surgery, I couldn't do that anymore.

Going to school from January till August, through the Executone, was a very interesting experience because it really paralleled more home instruction--although I was in class but I wasn't. I could speak if I clicked. My grades were better then. It was kind of like when I wasn't in the middle of the competition, my grades were better.


Brown

But wouldn't you also have had more time to study because you weren't doing so many more social or political activities.


Heumann

Yes. On the one hand, that's true; on the other hand, it wasn't, because I had a lot of company all the time. I slept in my parents' dining room, so my mother was home all the time, so she was there; her friends were coming and going, so I had less privacy. I did on the one hand have more concentrated time for studying, but I don't think that was it.

I think one of the reasons graduate school was easier for me was because the classes were smaller. The bigger the classes, I just have more of a problem. The smaller the classes, the more intimate it feels. The more intimate it feels, the less competitive it feels.


Brown

So was it competition? Or did you feel intimidated by the professors? I mean, what about the smaller setting made it easier for you?


Heumann

It was more normal, more casual. To me, I think of competitiveness, grades--the bigger the group, the more you have to be--every time you open your mouth you have to make clear your points more than if it's in a smaller group, when it's more dialogue.


Brown

You're speaking in the present tense now. Is that something that still holds true for you?


Heumann

No. No, it definitely was from then that I'm speaking of, not using the right tense. But it was curious that when I did this, it was basically three semesters because I did two summer school semesters and a full semester, and I did better and I felt better and I think in my senior year I did better. It could also be just that I was--


Brown

Become more accustomed--



140
Heumann

Right, that could be true, right.


Brown

Any last thoughts on college before we move on?


Participates in play

Heumann

I was in a play. Did we talk about that?


Brown

What play?


Heumann

Oh, my goodness gracious. [pausing for quite a while] [Eugene] O'Neill? [whispering] I can't remember the name.


Brown

So now you're going to recite all your lines for me.


Heumann

No. I played an old woman. It was very funny. When I came to audition, Dr. Edwards was the teacher. Eugene O'Neill was the playwright. I came, of course, in my wheelchair. She was thrilled because there was a part for an old lady in a wheelchair, so guess what I was: the old lady in the wheelchair. When the newspaper did the review, they said I didn't seem like an old lady; I seemed too young. I was nineteen or something. Yes, I guess I'm not seventy, and I didn't act seventy. That I definitely remember feeling like I was glad that I was doing it.

I didn't have a lot of lines. But I was not happy about the fact that I was never sure would they have given me this part had I not shown up in a wheelchair [laughing]? I used an old wheelchair for the part, a wicker chair.

But, on the other hand, it felt much more comfortable to me than when I was in high school. We did those high school things. Those felt large, and I felt very invisible. Here, while I felt stupid [chuckling], I felt more a part of the group because it was smaller, a small cast.

I loved working in the after-school program. It was a great experience for me.


Brown

What did you love about it?


Heumann

I loved working with the children and I just liked being with the kids. It was good. I liked being with the kids because I also felt like I was helping them learn. But for me, I was also learning. I really enjoyed that experience a lot.


More on college jobs

Brown

What did you do the first summer after graduation?



141
Heumann

I'm not sure. I did some work at the Alumni Association. I know it's not on my résumé. Maybe I thought it was so irrelevant I skipped it! But I think I was doing some minimal work. I got paid for it.

Then, in the fall, I was working for the university on this issue of whether or not the university was going to be purchasing a building in the community.


Brown

What was the purpose of that building? Was that sort of an extension of your after-school community involvement?


Heumann

You know, I have to say I can't talk a lot about this. It's weird. But it was definitely an extension of--what we had been trying to do was to make the university go beyond--you know, it's a small little area--and reach out into the community. The first summer I could have also worked for the Disabled Students Program. I could have done that. [whispering] I don't remember. I have to think about this.

One year, actually, as I think about it, I worked at a hospital in the neighborhood.


Brown

After college, or during college?


Social work at Cumberland Hospital

Heumann

I don't remember when, but I definitely worked at this Cumberland Hospital.


Brown

What were you doing?


Heumann

Intakes. Basic social work. I don't remember for how long or when, but I do remember it because I had a guy come up to me once and tell me--talked to me in Spanish--couldn't answer him. Said, "I'm sorry, I don't speak Spanish." He got very upset because he told me I couldn't speak Spanish. He was clearly Puerto Rican, and I wasn't speaking to him in his language. I was very apologetic and said--that happened to me once before. I told him I was very sorry. I didn't speak Spanish but couldn't even say I didn't speak it in Spanish [chuckling].


Brown

How long was--


Heumann

I don't remember. I feel badly. I don't remember these things.


Brown

What about some of these other positions?


Remedial reading program

Heumann

I did adult ed. That was evening. My friend, Toni, ran the program. I taught vocabulary and it might have been what we call today English as a Second Language, but I definitely


142
remember teaching a vocabulary course. I taught two semesters, yes. But that was in the evening.


Brown

What about a remedial reading program?


Heumann

That was the Board of Education in New York--


Brown

New York State?


Heumann

City. Wait. Which one are you talking about? Yes. No, New York State. They had a program that was really for black young men. They called them students with CRMD, Children with Retarded Mental Development. There were kids that came to my house, and I tutored them. Basically, they were second-, third-, fourth-grade reading level kids who weren't being served right.


Brown

They were age sixteen to twenty-five?


Heumann

Whatever, yes. Yes, that was before New York was doing even a worse job than it's doing today [chuckling].


Brown

The remedial reading program was part-time? The adult ed instructor was an evening position?


Heumann

They were both part-time.


Brown

Okay. Was this also part-time, the research assistant?


Heumann

No, that was during the day. I don't remember whether it was full-time or part-time, but I know that the reading program and the--yes, so from '69 to '70, I did work for the university; from '69 to '70, I did the remedial reading, which was part-time.


Brown

Did you enjoy those jobs?


Heumann

Yes, both of them were fine. I liked working with the kids. I always liked working with kids and I at least was trying to do something for kids who clearly hadn't gotten what they needed. They weren't bad kids. They clearly came to my house. They didn't have to come, so they wanted to be learning. It's very unfortunate.


Upward Bound program

Heumann

Then the Upward Bound program, which was in July and August of '70. I really liked that program. That was junior high school students.


Brown

What were you doing with them?


Heumann

Tutoring and counseling and just working with them. It was out of the Disabled Students Program.



143
Brown

So those were disabled students?


Heumann

No, it was run at--Dr. Childs was expanding the program. I can't remember if the name of the program had already been changed, but he was the one who had organized it. It was a TRIO grant, I believe. I became good friends with some of the kids. One of the articles that was written after I had gotten my job, Good Housekeeping, had a couple of those students in the article; they were brothers.


Brown

What about working at the Fort Greene Community tutorial program in the summer?


Heumann

It's just a volunteer program that we got money for that summer [chuckling].


Brown

So that was a paid job.


Heumann

Yes. That's what it says [laughing].


Brown

The résumé must be right.


Heumann

Right. Didn't lie on the résumé. Just don't remember it now.


Brown

We need to wrap up soon. Is there anything else you want to say about any of these jobs?


Heumann

These jobs were important jobs for me because this was when I was definitely moving forward to get my teaching position. What I had been trying to do in my last couple of years of school and during this time period was to get myself more teaching experience because I had none. So it was all me teaching myself how to do these things, which of course isn't the best thing, except that it at least allowed me to develop rapport with students, even though I taught young kids and my experience really was with junior high school and high school and above--college kids, and adults in adult ed. At least it let me know that I liked to teach.

They were good jobs. I particularly remember the teaching ones as being enjoyable. Most of the kids that I worked with were minority kids. There were some disabled students in the Upward Bound program, but there were also a number of minority kids who were at risk, which is why they were in the program.



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VIII. Preparation for Teaching; Denial of Teacher Certification and Lawsuit; Teaching Experiences in P.S. 219

Preparing to teach and get teacher's credential


[Interview 8: January 30, 1999] [Tape 11, Side A]
Brown

We're going to start with your struggle to get your teacher's license. Go ahead and just tell me about that.


Heumann

Okay. I guess when I was in high school I thought, when I began to think about careers, which no one really focused on with me, I thought about teaching because I like children. I actually was interested in a theater career, but that was something that seemed pretty unattainable, and my parents were definitely focused on my pursuing a traditional career. Did we talk about my applying to Julliard?


Brown

Yes.


Heumann

So when I went to college, I had been told by friends that I should--didn't we talk about this, too?


Brown

Yes.


Heumann

Okay. Where do you want me to go?


Brown

I guess just start at after you finished college. Actually, I would be interested in knowing how you found out what the process was, because it's my understanding that you didn't really tell anybody that you wanted to be a teacher--anyone official--because you felt that they wouldn't pay for you to do that. So kind of how you led into that and then taking the exams and what happened from there.


Heumann

Well, you know, at any university, you major and minor. In the 1960s, during the baby boom era, there were too few teachers, so they began to bring teachers in that didn't have


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to have as many credits as they previously had to have. That was kind of a stroke of luck. Did we talk about the ACLU [American Civil Liberties Union] stuff, too?


Brown

No. I was hoping we would get to that.


Heumann

Okay. So friends of mine had told me that if you go to the Department of Rehabilitation, you can't ask to major in anything where you can't also say so-and-so, who has such-and-such a disability which was similar to mine, has the kind of job that I'm interested in getting. So just tell anyone that I'm majoring in a traditional field. I think we talked about going to Rehab and my experiences.


Brown

I think so. Would you like to talk about it a little bit more?


Heumann

It's just that when I went to Rehab, I definitely didn't talk to them about being a teacher, but did talk to them about wanting to be a speech therapist.


Brown

Right. So you were pushing that aspect of it, because you knew people that were speech therapists that had similar disabilities.


Heumann

Exactly. They gave me this battery of tests which said I should be a social worker. That's what they told me that I should be. My parents just said, "Look, she wants to be a speech therapist. Let her be a speech therapist." So they did. When I went to college, I majored in speech and theater, and I minored in education, which meant I needed twelve credits for a minor. In the sixties, as I said, you didn't need to have a full credential in education. I took four courses and, at the same time, I also was trying to create opportunities so I could get some teaching experience.


Brown

I know you did a number of tutoring jobs.


Begins process to get teacher credential

Heumann

So I took my courses, and then, when I graduated, applied for a teacher credential at the Board of Education. They tell you what you had to do. I had to take a written exam and an oral exam and a medical exam.


Brown

The written and oral--did you take those right after college?


Heumann

You take it all after college.


Brown

But I mean right afterwards?


Heumann

Let's see. I graduated in '69. I took it in--yes--I can't remember if I took them in the fall of '69 or '70, but I took it.


Brown

Did you have to study for it or was it that kind of a test, or it was just that basically you should just know?



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Heumann

I just took the test.


Brown

It wasn't like an SAT [Scholastic Aptitude Test], where you can take practice exams?


Heumann

I don't know. Maybe. But I didn't.


Brown

You didn't. Okay.


Heumann

Because I wasn't majoring in it. But I mean I passed all the tests. There was a written test and an oral test. I passed the tests. I didn't have a clue what was going to be on any of the tests; I just [chuckling] did them, which actually is interesting, given my phobia on tests. But all three of the exams were offered in inaccessible facilities, so I had friends who carried me up the stairs for the written exam and the oral exam and the medical exam.

Do you want me to talk about the exams?


Brown

Sure.


Heumann

Well, the written exam was uneventful, except that I had to get carried into it. The oral exam, I remember, no one said anything to me about my wheelchair, but because it was in an inaccessible building, I couldn't use my motorized wheelchair, so it was, like, I had to be pushed in. I remember feeling like they were really looking at me, the evaluation team. But nonetheless, I passed it.


Brown

Were the evaluation team just teachers, principals? Do you know who they were?


Heumann

I have no idea.


Brown

Just people sitting there.


Heumann

You go in there, you take the test--whoever. I have no idea.


Brown

Wait for your results.


Heumann

It actually really is interesting, because I was always so nervous about tests. But I don't remember being nervous about this.


Brown

Were you nervous about oral tests, too, or did you not have any of those that you could judge?


Heumann

I didn't have oral tests. But I wasn't nervous, really. I was a little nervous about the written exam, especially since it was going into the unknown. When I think about it, I was surprisingly un-nervous about it. So those were uneventful, except for the sense that these people kind of were looking at me a little strange[ly], but they didn't fail me on the test.



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Experience of medical exam

Heumann

Then I took the medical exam, where I had an old woman as the doctor. She was just not into it from the very beginning. It was almost like she was a little bit, I don't know. It was very strange. The types of questions. She didn't follow, like, the format because I know that she didn't ask everyone she evaluated to show her how they went to the bathroom, which she did. First, I remember being completely blown away by the question. Then I remember saying to her that I could assure her that if my job was to teach children how to go to the bathroom, I'd be able to do that.


Brown

[chuckling]


Heumann

Then, in taking my medical history, she found out that I used to use crutches and braces. I told her I didn't use them anymore because it was after my spinal fusion, and she said I had to bring them in. I had to come back for a second medical exam and I had to bring them in and I had to wear my braces because I had to show her how I walked. I remember explaining to her that I would never be safe in a classroom as an instructor using my crutches and braces because I couldn't stand up by myself, I couldn't sit up by myself, it took me a very long time to walk, and I was completely unstable, so it wouldn't be appropriate for me to be teaching using them. But she insisted on it.

So we came back for another medical exam. This time I brought the director of the Disabled Students Program at Long Island University, Theodore Childs. He's an African American man and was very active in the NAACP. I said, okay, I'll bring him and he'll come into the interview with me, and at least I won't feel so vulnerable, like I did the first time. But they wouldn't let him in. They made him wait outside. This time she had two other doctors with her. I didn't bring in my crutches and my braces, and so they wrote down--I remember reading upside down on the form--that I was insubordinate.

At one point, this doctor--the woman--said to these other two men, "She wets her pants sometimes." I remember sitting there, thinking this is not really happening. It was like she had this fixation on bathrooms because the previous time she had asked me to show her how I went to the bathroom. I'm like, I really am not hearing this. I said, "What are you talking about?" But the truth is I was ready to cry throughout this whole thing because I was only twenty-one or twenty-two years old. I was trying to get a teaching credential, and I knew there were going to be problems with it, but the truth of the matter [is] you can't really prepare. Had I been trained by the best of people, which of course I hadn't been, no one would have said to me, "Be prepared for personal, invasive questions."

Anyway, I left that interview not with a very big sense of this is going to be a positive result. I guess it was in February, I graduated in '69, and I started teaching in February of '70.


Brown

You got your license in June of '70.


Heumann

Right, but I got my notification of denial in February, so I did take the test, by the way, right after school because I graduated in June. So by February I had been denied the job.



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Brown

Were you expecting that? Did you get a piece of paper in the mail that said you failed, and you were expecting that?


Heumann

I wasn't expecting to be passed, ever. Because when I had called the ACLU in my second year of school, it was totally expecting that I wouldn't get the job because I didn't know anybody who had been teaching in a wheelchair. I figured out of 70,000 people, it's not that I knew the 70,000 people, but I would talk to people--nobody knew anybody who was teaching in a wheelchair. I did find out later that there were a few people that were, people who had gotten their credentials prior to having their disability and had MS [multiple sclerosis] or something like that, but no one with it.

So I wasn't--you know, you could expect something and then it happens, and it's not that you're surprised by it, but it still hurts you.


Brown

Sure.


Heumann

So I remember when I got it and it said I had been denied my license, I think I called or wrote back to ask why. They then sent the letter which said that paralysis of both lower extremities, sequela, poliomyelitis--


Events leading to lawsuit

Heumann

So after I got the official letter of rejection, then I had to start figuring out what I was going to do. I remember I talked to my parents, talked to my friends, and was trying to decide what to do and how to do it. Things just kind of fell into place because there was a guy named--I think his name was Sam--a disabled guy, who was a journalism major in school. He worked as a stringer for The New York Times. I talked to him, and he got a writer named Malcolm. Do you have the article there?


Brown

No, not about that. Those are all still at my house.


Heumann

Okay. We can look up his name. Anyway, he wrote an article on a Wednesday about my being denied the teaching credential. Then the next day, on a Thursday, there was an editorial in The New York Times supporting my getting a job. That same day, that Thursday, I also got a call from a man named Roy Lucas, who was working with an organization, a small organization that was doing constitutional law work. He was writing a book and had read the article in the paper, and so called to talk to me about what was happening. While he was interviewing me for the book, I was interviewing him. At the end of it, I asked him if he would be willing to represent me, and he said he would.

Then, the next day, we got another attorney, Mr. [Schwartzbart], who was a customer of my parents. Then, on Thursday, I got a call from NBC, the "Today Show," asking me if I would come on. They set up a debate between me and a guy named Bob Herman, who was, like, the deputy--I don't know what his title was--but he worked for the Office of Special Ed in D.C.


Brown

Like what you're in charge of now?



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Heumann

What at that time was the equivalent.


Brown

Oh, from Office of Special Ed Programs. So this guy was debating--he was basically--you were pro, you should get your license; and he was con?


Heumann

He wasn't really con, but they kind of set it up as a debate. He was a nice guy, but I didn't know him from a hole in the wall, and so I just basically was ready for--what is it? A dog all revved up for the rabbit? What do they say?


Brown

I don't know.


Heumann

It was some saying. Anyway, I was all revved up. I was whatever it is. Then a number of things happened. I don't remember the dates that we finally filed. I'm sure that Roy called the Board of Ed and was told that yes, this is why I hadn't gotten the license, or that it was true. We went to court and got a date.

But at the same time that was going on, there were all these other things happening in the media, because once The New York Times did an editorial, then the Daily News did an editorial, and the New York Post did an editorial. Actually, there were all these letters that were being written. Some congressional women in Washington were writing letters to City Hall--I don't know who they were--basically saying, why isn't she getting a job?


Wins in court

Heumann

We went to court. Had a woman named Constance Baker Motley, who was the first African American woman judge in a federal district. I guess they change benches. I don't exactly know how it goes, but she was making a change in her assignments, and she told the Board of Ed that she fully intended on keeping this case, and so she encouraged them to revisit it. They did, and I went down for another medical exam, which was completely inconsequential. A younger woman sat at her desk, had some forms, said, "I'm sorry. This never should have happened." I got my license.


Brown

You did actually sue them, but did the suit ever go to court?


Heumann

Yes, we went to court.


Brown

So why did you have to have the medical exam?


Heumann

Because the court ordered it.


Brown

Oh, okay, a real medical exam.


Heumann

No. The judge said, "I'm not letting this case go. I suggest that you do what you need to do to resolve the problem," which was that I had failed the medical exam, so they gave me another medical exam. But it was nothing. I mean, it was less than a doctor's visit. So then, when I got my teaching credential, I couldn't find a job because there weren't any


151
principals that wanted to hire me. Again, I had not yet exhausted the world of principals, but--


Hunting for a teaching job

Brown

But wasn't it also partly an issue of the timing of when you got your license, and so it was June and the jobs were available in September, that there wasn't necessarily a lot of time--I mean, wouldn't a lot of principals already have filled a lot of slots? That's one of the things I read in one of the articles.


Heumann

Is that what it said?


Brown

Something that a lot of people said, "Well, I would have given you this job a few months ago, if you had come when you should have had you not failed the medical exam, and I would have had a job for you then, but given that there's such short time, I couldn't keep the position open for you."


Heumann

It didn't feel like that was an honest answer. In fact, teachers do leave at the end of school years, who didn't necessarily give notice that they were leaving. But nonetheless, the principal of the school I had been a student in offered me a job, so that's where I went to teach.


Brown

Going back a little bit, at what point did you decide you wanted to sue the board?


Heumann

It was something that I had obviously been thinking about since I was in school in my second year. I think I made the final decision the day that I found a lawyer. One of the obvious barriers in trying to decide whether I was going to sue the Board of Ed was finding a lawyer. It's not like today, where you've got disability rights programs that you can just call and say, "Oh, by the way, I've just been discriminated against. Have a lawyer for me." There was no such thing as have a lawyer.

I had a cousin who was a lawyer. I don't know if I ever spoke to him. I don't remember. But I didn't really know any lawyers. So it just all was meant to be because somebody calling me that I didn't even know, who could represent me well.


Brown

I also understand, obviously--from the things that I've read and from things that you've said and things your mother said in the interview with her--that public opinion was absolutely behind you, pretty much all the way. Was there anybody on the other side, saying, "Well, she shouldn't be a teacher, and here's why," or was it just a matter of the Board of Ed digging in their heels and saying, "Well, that's just what we've decided"?


Heumann

You know, in something like that you don't really know who's saying what. There were, I think, a few letters or something that were kind of in the paper, although I'm not 100 percent sure, that were somewhat questioning. But as a rule, opinion was very high for my getting a license and teaching, because of the shortage and because people felt that I would be a great role model for kids. Yes, the Board of Ed is a bureaucracy, and there are rules.


152

There had been a law passed in the forties, I think, under [then-Mayor Fiorello] La Guardia, which had basically said disabled people couldn't work if you had certain types of disabilities, so the history was there, yes. I think I may have spoken to some people on the phone who didn't feel good about it. Had I not gone to court, I wouldn't have got my teaching license. Bottom line.


Contacts ACLU and gets rejected

Brown

Now, when was it that you called the ACLU? Did you call the ACLU when you were thinking about suing? Did you call and ask for their support?


Heumann

I called in my sophomore year and said, "I'm interested in being a teacher. I'm about to start taking classes. What should I do?" They said, "Don't worry. If you have a problem, call us and we'll talk to you then." So after I was denied the teaching license, I called them again and explained that I had previously called them and explained what the situation was and that I wanted to come in to talk with them. They didn't want me to come in and talk to them. Give them the information, send them whatever there was, which I did. Then they contacted me and said that it wasn't a case of discrimination because they had denied me on medical reasons, on medical grounds.

I said, "Let me please come in and talk with you and explain to you how denying me my job on the grounds of medical condition is in fact discriminatory, and you can't write it off as I failed the medical exam." But they wouldn't set up an appointment for me to come in and talk to them.


Brown

How did you feel about that?


Heumann

I was very angry. I didn't know anything about the ACLU, really, at that point. Of course, now I know more about them. I had a problem with them later on. I was at CIL, so this was in the seventies. My friend's father had nominated me for the board of the ACLU. When I told them that they'd have to pay for an attendant, they called me back and said they didn't pay for childcare, so they wouldn't pay for an attendant.


Brown

This was in the seventies?


Heumann

Yes. I explained to them again that, whether or not they should pay for childcare wasn't the issue, although clearly it might be something to consider if they were looking for somebody who couldn't be on a board. But in the case of disability, it clearly wasn't the same as childcare. They wouldn't do it.


Brown

Do they have any more of a clue now?


Heumann

I don't know. Mary Lou [Breslin] was on the board locally for ACLU. I don't know of anybody who's on their national board who has a disability.


Brown

Did you get damages from your suit?



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Heumann

No, no, I didn't get any money.


Brown

But you did sue for damages, seventy-five thousand dollars.


Heumann

Yes. We didn't get anything.


Brown

For hardship.


Heumann

Once I got the license--


Brown

That was all you really wanted.


Heumann

Yes. Once I got the license and the job, we dropped everything. Silly. Probably shouldn't have. But that's history.


More on lawsuit

Brown

Actually, that's one of the questions that I was going ask in a minute, but I'll go ahead and ask it now. From the vantage point of these many years later, is there anything you would have done differently in that fight?


Heumann

No, not really. I won [chuckling]. I got much more publicity than anybody ever thought. We didn't plan any of it. There were articles--between newspapers articles, magazine articles, radio and TV interviews--there was something at least, even towards the end of the year--something at least once a month. So over the course of a year, there were some weeks where there were all types of newspapers articles and TV or radio interviews going on.

So no, I think now, looking at the issue of letting the $75,000 go, it would have been better to try to do something and stick it to them. Then I was getting ready to start teaching, so there wasn't time for that.


Brown

Right. So did people stop you on the street?


Heumann

During the whole thing, during that whole year, it was pretty amazing the number of people who stopped me on the street. People would be in their car, driving down the street, honk their horns for me to go over and say hello. People would stop me in stores and on the street. Some of them would just say, "Congratulations. Keep it up." But there were others who talked about people they knew who had disabilities who were having problems of discrimination.

I and some of my friends had decided, when it was apparent that we were getting a lot of publicity out of this, to not just talk about the discrimination against me in my looking for a job. We decided that we would really focus it on the kinds of discrimination that disabled people face, which also made it a more interesting story, I think.



154
Brown

It seems like it was obviously a pivotal point in your life, winning your license. How do you think that has affected the course of your life since then, particularly in those earlier years?


Heumann

I think it was just another step, so to speak, in my life because it was a major hurdle. There's no doubt about that. It was a very publicly displayed issue. But it still was just something in the continuum. It sticks out as obviously an important part of my life, but it doesn't feel that it takes a higher place than some other things. I think it helped me with my resolve that if you stick to something you can really win. Not to give up and to kind of pursue it any way you can.


Brown

Did it have much of an impact on how you felt about yourself?


Heumann

Yes, I do say in speeches that I think if I hadn't done it, it would have had a very negative effect on myself. I really had to make a decision that not only would I go ahead with the lawsuit, but in going ahead with the lawsuit it meant that--



[Tape 11, Side B]
Heumann

I think had I not gone ahead with the lawsuit, it would have been a big problem because I would have basically never known whether I was able to teach. It would have meant that I was accepting what the system was saying to me and to other people. So, by going forward with this one, even if I had lost, at least I would have been fighting for what I believed in. But the fact that I won just really reinforced to me that there were a lot of issues of discrimination that we were facing, and if we in fact pursued a remedy, that we could get them, in many cases.


Brown

Is there anything else you want to say about the lawsuit?


Heumann

The lawsuit itself?


Brown

Any of it.


Press and TV interviews

Heumann

I remember the day of being in court. It was kind of awesome. Here I am in this court, with this judge. It did feel like I was fine because for some reason, when I think back about the judge on the bench, it does feel kind of godlike. She was kind of all-consuming in the room. Of course, she wasn't, but I just remember that, sitting there and thinking, "Wow, this is pretty amazing, that this is happening." It didn't take very long. But everything felt very serendipitous: the newspaper articles, getting an African American woman as the judge. The symbolisms were very powerful for me.

Once the interviews started, I had never done that before. I had no public speaking training or classes to take about how to present yourself to the media. It was, like, get a call on a Wednesday, do an interview for a newspaper, have an editorial, and then get a


155
call to go do the "Today Show." It was, like, Well, do the best you can do. I really got into it [chuckling].

I remember thinking it was good, what I had learned from my father. Really, our dining room discussions were definitely preparing me for debates and definitely prepared me not to be a quiet, unassuming person but, rather, to be a New Yorker and go for it and interrupt and do whatever you needed to do to get your point across.

After I did this interview with Bob Herman--who I didn't know from a hole in the wall--when I met him years later because of other work I was doing--he kind of characterized it as, he supported my position, but he had to get out there and not oppose my position but debate it. He was a Jewish guy also, from New York, so it was kind of funny, really. We did laugh about it a number of times.

But it was very good. It really allowed me to realize that I had different qualities that I could use. I mean, I knew I had the ability to speak before, but I didn't know that I could do television. So that was all very good.


Brown

Were you nervous about speaking to the press or being on TV?


Heumann

I think I probably was nervous. You're always nervous a little bit, but I guess the other thing for me is I had studied voice for so many years, and I had done performances, and I've been through my nervousness, where I would cry on stage at the synagogue or when I did my bat mitzvah--oh, gosh! When I did my bat mitzvah--did we discuss this?


Brown

I don't remember. I don't think so.


Heumann

Well, I went to Hebrew school for years. I was born in '47, so it would have been the late sixties, no, late fifties. At thirteen, boys have their bar mitzvahs, but girls didn't have Bar Mitzvahs, or Bat Mitzvahs, at that time. I was in a class of women from the Ocean Parkway Jewish Center who were preparing to do kind of like a confirmation. We all got to get up on stage together and some of us each sang, like, one line of something. I remember that I was nervous about this. Definitely not the do that the boys got. No way. This was very liberal because most places weren't doing anything at that point.

I remember being up on stage--carried up the stairs--and I felt like I made a mistake in one of the notes I was singing, and I started crying. My father had to take me offstage. I remember this. Take me offstage, take me out of the shul, take me off someplace. I was mortified. I was crying, I was sobbing. It was, like, "What are you talking about? We didn't hear any mistake." I remember it was with a note, key, the word key [singing as one does when reading the Torah]: kee-ee--ee-ee-ee. I thought I went flat. I died. It was terrible!

They used to call me Sarah Bernhardt when I was younger. You know, sometimes now I start crying when I'm on stage? Now I get a little weepy, but I can keep going forward. I could cry [chuckling]. I could do much more. I don't know where it came from, but it would just, like, be there. I think it was this whole thing of vulnerability and being different. It was more when I was at my family's synagogue, but the breaking up on the key-ee was not at that synagogue; it was at the Ocean Parkway Jewish Center.


156

When it actually came time--I mean, I think there was this coming--anything for me personally was more difficult. But I wasn't arguing for me. I was affected by it, but the way we had designed it, so that it was talking about discrimination and its impact on people, using myself as an example but also being able to give other examples, made me as a rule not feel nervous. I felt I had a conviction, and it was easy for me to fight for that conviction. And I did feel like I was entering into battle, just a change in my physical being. So nervous? Sometimes. But not overwhelmingly so.


Brown

You didn't have to get carried off the set of the "Today Show," sobbing.


Heumann

God, I remember having to be taken down the steps. Oy.


Brown

It's a wonderful story.


Heumann

Yes.


Brown

All right. Do you have any other things you'd like to say about the lawsuit or about that time in your life when you were facing that struggle?


Heumann

I think in the office we have the telegram framed when I got the job.


Brown

The telegram from?


Heumann

The Board of Ed.


Brown

They sent you a telegram.


Heumann

Yes, right. And my father framed it.


Brown

You think it's in the office at work?


Heumann

Yes, hanging on the wall.


Brown

Good. So do you want to move on to when you were a teacher?


Heumann

Sure.


Teaching job in public school 219

Brown

A little bit about teaching? As I understand it, the first year that you were teaching, you were teaching disabled kids?


Heumann

Right.


Brown

Just that first year?


Heumann

Right.



157
Brown

What grades were you teaching?


Heumann

I'm an itinerant teacher.


Brown

Which means?


Heumann

Which means I didn't have my own class. The school that I taught in was not accessible.


Brown

This was [Public School] 219, where you went to school.


Heumann

Right. So the basement was accessible, but the rest of the school wasn't. The only classes in the basement were the classes for disabled children. I taught in every grade, and it felt like I taught any subject that the teacher didn't want to teach. I taught language arts, I taught history, I taught music.


Brown

So did you stay in a room and the kids would come to you?


Heumann

No, I would go from room to room.


Brown

You would go, like, for different parts of the day?


Heumann

For periods. For one period here, one period there. But while I was there, here I was, back in the school that I had gone to school to. Most of the teachers were teachers who had been there when I was a student. I had been quite critical of the educational system [chuckling], so this is the old "what goes around comes around." Of course, it didn't deter me.

I have to say, I started talking to some of the parents about my concerns about what was going on with classes, to try to get them a little organized. I remember there was this one kid--father or mother told me that she was going into a certain teacher's room for the next year--and I said, "Oh, don't. Don't let her go into that room." There weren't a lot of choices here. There were only--what were there?--five or six classes. Yes, that's all there were: five or six classes.

I explained the reason why I thought the kid shouldn't go in there. I didn't think the teacher was a very good teacher. But anyway, the kid went in there. Years later, my mother met them in the neighborhood, and they said that I had been right; they shouldn't have let the kid go there [chuckling], into that classroom. I mean, in the realm of life, it didn't destroy the kid's life, but it did waste a year of it.


Breaks leg

Heumann

I broke my leg in the middle of all this.


Brown

While you were teaching?


Heumann

My first year. I would take a shower by sitting on a beach chair.



158
Brown

Just a regular beach chair?


Heumann

Yes, a little beach chair. You'd check to make sure the beach chair was not about to fold.


Brown

Stable.


Heumann

Right. So Harry, my friend Arlene's boyfriend, was lifting me. It was very bizarre. I had said, "Harry, check the chair to make sure it's okay." He did. He leaned on it. But he must have leaned on it and, whereas it was probably sturdy in the beginning, however he leaned on it probably made it start folding because he sat me on the chair and the chair folded, and I broke my femur. We had to call the ambulance, and they took me to the city, and I was in the hospital--this is the old days--two weeks. But then I was in a cast for a total of eight.


Brown

Eight weeks?


Heumann

So I was out of work for two months. But as far as my job was concerned, I didn't have my own class anyway, so they just got a substitute. I'm trying to think. When I came back, there was a new principal. His name was Mr. Frank. Mr. Greenwald was the one who had hired me. He retired. Mr. Frank came in. There was one pre-k [pre-kindergarten] class on the floor, and they moved it to a trailer where they had other kids and gave me a class. So the second year I had my own class.


Kept out of evaluation process

Brown

These were disabled kids or nondisabled kids?


Heumann

The second year? Nondisabled kids. The first year other things that happened--because I wasn't a special ed teacher--they wouldn't let me participate in evaluations of kids. What was still going on at that time was that kids were screened. They had to come to school, and they spent a couple of days there, up to a week. They would take the information to this team that had a social worker, an OT [occupational therapist], a PT [physical therapist], speech therapist, a doctor, and they reviewed the kid's record and made a decision as to whether or not the kid could come into school.

I remember being told that I wasn't allowed in because the room wasn't big enough.


Brown

[chuckling]


Heumann

This is what I hate about the system.


Brown

Do you think they actually didn't want you there because they felt that you would advocate to have these kids come to school, whether they thought they should be there or not?


Heumann

I have no idea. They didn't tell me. But they obviously didn't want me there because the room was not too small for my wheelchair. But I remember thinking--I think it was


159
because of the critical nature that I had spoken about the program. The woman who was supervisor--there was no love lost between the two of us, at all.


Importance of a role model

Heumann

But there was a teacher there, Mrs. Edwards. I really liked her. She was good. It was very interesting to be with these kids who had never--probably, it's fair to say that almost never--had met an adult with a disability in an employed position. So we spent time talking about working.


Brown

These are the disabled kids?


Heumann

Yes. I remember in one of my classes, the older class, I was talking to the kids and talking with them about how it was really important for them to study hard and that even though they weren't being pushed hard in this program, if they expected to be able to do anything, they needed to become a little bit more self-motivated. I don't know what happened to most of the kids. I think one of the kids in my class, Fred Miles, went on to go to college. His father was a doctor; his mother was a teacher.

I met a kid who's no longer a kid. He's now working at an independent living center in upstate New York. He told me that his mother had met me at a meeting of the President's Committee. We had talked about the fact that he lived on Long Island, and they wanted to send him to a program called BOCES, which is a segregated program for disabled kids. I told her not to do that, and she didn't. She was ever thankful that I had really encouraged her not to do that, and he had done very well in school, not having gone to that segregated program.

I felt, as I said, like it was important not just for the children but for the parents, that they had not only someone who was an adult with a disability, but I wasn't the average teacher in the school because of how I had gotten my license, and most of the parents knew about it.


Brown

So do you think that helped the parents with disabled children, sort of watching you through the media go through that?


Heumann

I hope so. I think from people I spoke to, it did. I think it's what parents talk about, ever since I've known parents of disabled kids and I have been an adult, the parents benefit from seeing adults, especially if they're more inclined towards what it is we're supporting. If they don't support integration, then I think they think it's a nice thing but it's not for their kid, so it's good that we're doing it.


Brown

[inaudible]


Heumann

No, it's not that even, but it's just that they see what we're doing as being beneficial to someone other than their children.



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Objections of student's parents

Brown

When you had your own class, with the nondisabled kids, you were teaching just all subjects, right?


Heumann

Right. I taught second grade, so I taught the full array of math and science and social studies and reading.


Brown

Did the children react at all to your disability? Did you talk about that, really, with the nondisabled kids? What impact did it have on them?


Heumann

I think I talked about it to the extent that kids asked me questions, which they certainly did. I talked about it to the extent that maybe they would say something, just in the course of conversation, about something related to disability, if it was, like, PC [politically correct]--I wouldn't talk about that. But we didn't really do lessons on disability. Kids always asked questions. They didn't ask them in a scheduled way.

The first year that I was teaching the nondisabled kids, one of the girls came up to me and said, "My mother said to say, 'Merry Christmas' to my sick teacher." I remember saying to her, "Thanks a lot, honey. You can tell your mom that I'm not sick, though."

I had one incident. Well, actually, what I found out was that there were some parents who didn't want me teaching in the school. I'm trying to remember how I was told that. It might have been by another teacher in the school. But I was never officially told it. But there were some kids' parents who had gone to the principal, I was told, who said that they didn't want their kids in my class.


Brown

Parents of nondisabled kids, or disabled kids, or both?


Heumann

No, the parents of disabled kids didn't know the parents of nondisabled kids. They didn't live in the same neighborhoods.


Brown

No. I mean, this happened when you were teaching nondisabled kids?


Heumann

This was not parents of disabled kids. The parents of disabled kids had nothing to do, usually, with the principal of the school. They were in the school, but they were like squatters on a certain level, because whenever they wanted them out of the school, they got them out.


Brown

So the parents probably didn't cause problems or say--


Heumann

Parents of disabled kids. My mother and some of the parents then at that time did because they were unhappy with things that were going on, but as a rule the parents were pretty compliant. The principal usually had very little to do with what was going on. They maybe observed, but there were no consequences for the special ed teachers because they weren't evaluated, really, by the regular principal.



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Life in the classroom

Heumann

The second year, I had an aide in my classroom. Most of the other teachers didn't. But I had an aide in my classroom. For the first year I taught nondisabled children, when it was time for me to start teaching, I had gone in and set up my classroom. I think Mrs. Graham was the teacher's aide. She's very good, very nice, and very experienced, and very efficient, and very take-charge. Unfortunately, I think she got sick in the middle of the year, and she was gone. Then I got a Mrs. Washington, who actually was the mother of one of the kids in my class. She had another job. She worked in a bar at night. So she was quite the contrary to my first aide.

When I got my first class, regular class, they lost all my records. Couldn't find them. Told me not to worry, just take whoever came in the room. There was a union contract: you couldn't have more than thirty-two kids. It would all work itself out. So thirty-six kids came into my classroom. I taught in a very big school in Brooklyn. It was a K [kindergarten] through six school, and there were ten classes at each grade level. There were seventy classes. The kindergarten classes maybe had between twenty and twenty-two kids, the first-grade classes had between twenty-five and thirty kids, and the second-grade classes had between twenty-eight and thirty-six kids.

The classes at that time were based on the level of intelligence of the kids, so a two-one was the smartest class. I had a two-six.


Brown

Is that the bottom?


Heumann

To ten. Remember, there were ten classes. So two-ten was the bottom. I didn't have a two-ten; I had two-six. But I had about seven kids in my class who had distinguishable problems. I had a kid named Leroy and a kid named Leonard, a kid named David and a kid named Richard and a girl named Deborah. God, I could see every one of these kids. How many was that? There were a couple of others, but those--Richard, David, Leroy, Leonard, and Deborah--there was Anthony, another one or two. But the five had, like, A-plus issues.

[tape interruption]

Leonard tried to tip my wheelchair over one day. He was a big boy. Leroy was kind of like a baby, and Leonard was like a big bully. He was a child who was seven, but he was a big kid. Leroy was tall also. Leroy was kind of a stringbean, and Leonard was kind of a fighter type, you know [ringing phone].


Heumann

If both of the kids were being bad and you paid attention to one, it made the other kid have more problems. So after Leonard tried to tip me out of the chair, we gave Leonard to another teacher, who had taught more. She had more experience.

I mean, what I wanted to say was that the first day, not only had they lost my records, which I knew before that day, because you came in a couple of days early--like, the week before to put the class together--but as the kids were coming into the room, I remember thinking, I've never in my life been in a regular second-grade classroom, for anybody. So now I was teaching a second-grade classroom, where not only had I never had any


162
training in how to be a teacher, in a conventional set[ting]--since I had trained myself with other college students--but I had never even been in a classroom with kids who were seven years old, or any years old, because I had never been in a regular classroom in elementary school. I didn't go to a regular class until I was in high school. For a split second, I was, like, Oh, God, this is very interesting. I do remember feeling like this lightning bolt had struck my brain on that.

My experience with those kids, like my experiences with the Upward Bound students and my experiences at the Fort Greene youth center, were that the kids were all inner-city kids. The kids were great, as a rule. To the extent that disability became an issue, it was usually something that they were both understanding of and supportive of and just helped me deal with things. I think that would have been true for most programs, but I think in particular for kids who had experienced--I mean, at that age, they didn't know what they were experiencing, but just the kids who had some difficult times. It wasn't a big deal.

Actually, the young girl whose mother said, "Say 'Merry Christmas' to the sick teacher" was a white kid. I never had any stuff from a black parent. No. Actually, I took kids to my house. I had two kids who came to my house. It was fine. The kids were fine. The parents were fine. I had sent a letter home the first day of my first year of teaching regular classes, with my home phone number on it. I remember some of the teachers being appalled that I was sending a letter to the parents with my phone number on it.

I had an after-school program. I was the only teacher in the school. There was no after-school program. But, you know, I can't remember if one of the reasons I thought about it was because they had difficulty with transportation, but I thought what do these kids do after school? If we could run something after school, that would be a good thing for them. Not being out on the street and getting them to do their homework or do some reading. Now, of course, they put millions and millions of dollars, and they have all kinds of names for these programs. But I did that for a year.

Then I had a problem with the principal because what was going on in the school. New York City was divided by districts, and this was District 18. In the seventies, as more whites were leaving and there were more minority kids in the public schools, there had been some fight in the district between the whites and the blacks. One part of the district was more black, and the other part of the district was more white. There were definitely Puerto Ricans.


Issues of racism and children with disabilities as pawns


[Tape 12, Side A]
Heumann

So, as I had said earlier, the disabled children in the school didn't have a right to be in that school. It wasn't their neighborhood school. They were part of the special ed program through the Board of Education. There was this conflict going on in the district between the white part and the black part. When I went to school there--I left in 1961--the school was a white school. I mean, there were a few black kids, but the special ed classes were


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racially integrated classes. But in the regular classes, there were a few, but basically all white.

By 1971 the school was basically all non-white. I had one white kid in my class, a kid named Shavonne McGurk. She came in late. I'll never forget this. She came in late. She was, like, a day or two late. She was like a pipe cleaner, kind of like a very thin kid, and little. I mean, seven-year-olds aren't that big, but she was spunky and it was clear she had grown up in this neighborhood, and she knew how to take care of herself. She was a good student, but feisty.

Anyway, so that was the makeup of my class. I had one white kid, and I had a couple of Puerto Rican kids--Diane Rodriguez--God, I remember all these kids. Diane Rodriguez. You would never call her a bad kid, but one day she seemed to be acting out a little bit. I said something to her mom, like, "Could you talk to Diane tonight. She seemed to have a little rough day." The mother comes in the next day and tells me--the mother's first language was Spanish--the mother was very focused on school. She said to me, "Don't worry. There will be no more problems. I had Diane kneel on rice for" I don't know how many hours, "saying Hail Marys."

That's when I realized no one taught me about any of this cultural diversity stuff [chuckling]. I mean, I knew some stuff from where I had worked before, in the African American community. I had friends who were Puerto Ricans. But I had never interacted with families around discipline. So that was--okay--unless a kid was, like, really being bad, skip telling the parent, to sit down and say, "Now, all I wanted was, 'Diane, I hear you didn't have a good day in school,'" not three hours of Hail Marys.

But back to the original story, which is that the race issue was very important. The school was getting larger, and so it was at the point where they couldn't take any more kids in the school. They were busing in New York. The plan was to bus kids from our part of town into the white part of town, and they didn't want that. What they decided to do was to take the disabled kids out of the school and bus them to this other school.


Taking on the Board of Education

Heumann

I, by myself [chuckling], decided that I was going to take on the Board of Education [chuckling] and the principal of the school and District 18 and the teachers union. I can make this short. I'll tell you the story. But I lost. But it wasn't because I didn't really try. I talked to the parents, and I remember I talked to Mrs. Miles. Mrs. Miles was African American. Her husband was a doctor; she was a teacher. She was president of the PTA [Parent Teacher Association] for the disabled classes. They didn't have the same PTA [chuckling].

I said to her, "Look, Mrs. Miles, you really need to understand what's going on. Your kids are being used in a racist situation. You really can't let this happen. It is really setting a terrible precedent to allow these kids to be bused to this other school. You need to say you don't want the kids to be bused out." I talked to some of the teachers. There was one African American teacher in the special ed classes, Mrs. Edwards. I remember--God!--I


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spoke to the Board of Ed, I spoke to people from the school district. "You can't do this." I had meetings.

But, of course, I was kind of an island unto myself because I didn't know any of the people. It's not like I could get into my car and go drive around and meet people and stuff, because I couldn't do any of that. All these places were inaccessible anyway. I just thought ultimately right would prevail. The teachers union never met on the floor that I could go to meetings. I didn't even know what was going on because they always met someplace else. Okay. This is the AFT [American Federation of Teachers]. This is a liberal teachers union. So I'm going to ask that they have one meeting on my floor and that we talk about this. So we did.

I explained to them how I thought--because all the teachers were white--how I thought this was completely racist and we had to make sure that this didn't happen, that there were thousands of kids on waiting lists who had disabilities, and if this wasn't being used as a racist thing, then they could put disabled kids in this other school because they weren't expanding the number of classes that kids had to go to school. They voted against me.

So I said, "Okay, I want to talk to the entire teacher body." There were a lot of teachers in that school, right? So we had this reasonably large auditorium, and we had an all-staff meeting one day. I asked to speak. Mr. Frank, the principal, introduced me by saying that Miss Heumann alleged that there were thousands of disabled children on waiting lists. But he had just gotten off the phone with the Board of Education, who said there were no kids on waiting lists. Now she would like to address you.

This one guy got up in the back of the room, who said, "I can't speak to what's going on in New York, but I just came here from Philadelphia, and I know in Philadelphia that is a problem, that there are thousands of kids on waiting lists." That was the only positive thing in all of the months that I was trying to work on this.


Backlash for activism

Heumann

So I got up there, and I explained how I felt this was a racist activity and kids shouldn't be put in the middle of this, and I really would hope they would, in fact, support and say that this was a bad thing to happen. PS: They didn't. But what did happen was Mr. Frank came into my class in May--this was around April, May this was happening--and gave me a very poor evaluation. I was really upset by it because it was very clear that it was totally linked to what had happened, because it was May. It's not like all of a sudden I woke up one day.

I mean, I will never say I was the best teacher in the world, having never student-taught, having had very little support in my classroom. Teachers have burnout in classes today, a lot of teachers leave after the first three years. I was doing a pretty damn good job, and I was doing more than most of those other teachers did. I remember not only the after-school programs that I was running, but you had two open-school times. The first time we had them was one in the afternoon and one in the evening. The second time it was just in the afternoon. I remember I had a big deal with the principal because I said, "We can't just


165
have it in the afternoon." He says, "Well, nobody is going to come, anyway." I said, "Well, nobody is going to come, for sure, if they're working. They're not going to come. I at least need to be able to give people the opportunity to be able to come."

So they opened the school. They did not want to do that, either, but they did. I was the only teacher in the whole frigging school that had the second time, an open-school. Two parents came. So it was probably two parents that probably wouldn't have come otherwise. I couldn't go to kids' homes and visit their homes and do a lot of the things that would have been good things to do, but neither did the other teachers.

So he wrote me this letter, bad evaluation letter. I went and I talked to Mrs. Edwards, who was the African American teacher. She said to me, "You know why this is happening, and you need to respond to it." So I wrote this scathing letter. I said, "If I'm the bad teacher that you're saying I am, then you certainly shouldn't have been waiting till May to tell me that I was doing such a poor job. You should have been in my classroom much earlier, telling me what I was doing wrong and getting me some support."

But the next year they didn't give me my own class again.


Brown

So your third year of teaching you didn't have your own class?


Heumann

I was itinerant again.


Brown

With disabled kids?


Heumann

No. They moved the disabled kids out.


Brown

Oh, that's right. So you were still on the basement--


Heumann

The whole floor was now second grade, because they moved all the disabled kids out, and they moved all second grade on that floor. Here you had classes that had been set up for eight to twelve kids that had twenty-eight to thirty-two kids in them. I mean, it was completely inappropriate. But they were gone, and they went to this other school. A nicer school, but totally and completely inappropriate.


Experiences prepare Ms. Heumann for future work

Heumann

I didn't get a bad evaluation the next year. I don't know how it went in my record. I have no idea. I mean, they didn't put me on warning or notice or anything like that. It was just a critical letter. That was the kind of thing where, as all this was going on, I didn't intend to leave teaching, really, when I went to graduate school. You had to go to graduate school. You had to have a graduate degree within five years. It could be in anything you wanted.


Brown

This was to maintain your teaching certificate?



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Heumann

Right, for everybody in New York, which was good, that you had to have a master's degree. It probably would have been good if they told you to get a master's degree in some subject related to education, but you didn't have to. Horticulture, well, astrology, horticulture would have been potentially relevant. So I was looking at getting my degree in social work, which was kind of funny, given rehab, to be a social worker. But a lot of what I was doing was social work. I wasn't going into social work. I was looking at getting a master's in community organizing from Columbia.

I had actually taken one course at Columbia in community organizing while I was teaching. It was just too much. I had a friend. He drove me up to school, I think it was once a week for a class. I did really well in it. I really loved it. I aced the class. It was great. Which is why I applied to graduate school, and I actually was accepted.


Brown

To that program.


Heumann

To Columbia, which was interesting. I got into Berkeley, got into Columbia. I wasn't afraid in graduate school. It was just something where I finally was taking courses that felt right to me. They were in my areas of expertise, and I felt that I could be competitive, where in a lot of other programs, I didn't feel competitive. I always felt behind because of the lack of appropriate education. I can't compare it to how other people felt, but I never had appropriate instruction until I got into the ninth grade. It was all these years of not having appropriate instruction and then really in the ninth grade, a lot of it was review, but very, very fast review.

If you've had it before, one could argue that it's stupid to teach courses where you're reviewing again because it should be instructed in a different way, but I remember language was hard because I hadn't learned grammar appropriately. English was hard. It's not that I did poorly. I probably graduated with, like, an 88 average from high school. But it was the type of thing where I always felt like if I just had had some appropriate instruction earlier on, high school wouldn't have been something where I was always trying to get through, and praying that it was over, and worrying about tests all the time.

Any time there were lectures or discussion, I always did well. I remember my parents coming back from open-school night one year, being told that I did really well in class, my homework was good, but when I took a test it was, like, all these teachers individually said, "She looks like another person when she comes in to take tests." So when I was teaching the disabled kids, it was really partly based on those experiences, that I was trying to get the kids to focus on school.

You couldn't fault part of what was going on there. The small classes. You couldn't say small classes were bad. They weren't all on one grade, either. But the instruction. I mean, the teachers just weren't prepared. They, in part, weren't prepared because they weren't taught. They didn't have the same books, for example. The year that I taught second grade, had my own class, I remember that I offered to share my books with them. I offered to have kids come into my class. Nothing ever happened like that. They never got any integration.

The classes, the special ed classes. They had some kids who had mild mental retardation, but mainly they were physically disabled kids who at most had mild mental retardation. The truth is, a lot of the kids in my class were socially disadvantaged, and so there was no


167
discrepancy between these kids, and to the extent that there was, it didn't matter anyway, because the kids could all benefit each other.

I think all of that was very helpful for me in a lot of the work that I was doing--the DIA work that I did and the work that I did at CIL [Center for Independent Living] and the work I did at WID [World Institute on Disability] and now, certainly, in this job. While things change, unfortunately they haven't changed that much.


Expectations for students

Brown

Part of the problem was low expectations? Is that something that you tried to--


Heumann

I didn't have low expectations. I didn't have low expectations for any of my kids. I mean, I always felt that all these kids could achieve if they could get what they needed. In part, that's why I ran the after-school program. I thought, okay, if I can give them another hour and a half to two hours in school and we can be reading and we can--as I said, all the things--everybody is, like, "Oh, we need to do after-school programs" and blah-blah-blah.

It would have been great had the school really had an after-school program where we would have brought tutors in. The reading levels of a lot of the kids were below second grade. I did have some kids that were on grade level, but certainly not many who were above grade level, if any.

There was abusiveness that went on between the regular teachers and the nondisabled kids. The kids were having problems who didn't conform. The classes were too big, and we were lucky at that point. We did have a school psychologist.


Brown

You did?


Heumann

We did. A lot of schools don't have them anymore. She was helpful. But there was just a lot of problems. I felt very early on that these aren't the fault of the kids, and there are ways of getting to these kids to make them feel valued. A lot of the parents were very nice. They wanted to do right by their kids. It was a very good experience.

The next year, when I had an itinerant program, it was okay. It allowed me to do more of my DIA work. Having your own class was harder work, on a certain level. Again, you taught a bunch of subjects. I wasn't, like, the math teacher or the reading teacher. I taught a bunch of different classes.


Brown

Did you always teach the same group of kids the same things? Do you know what I mean?


Heumann

Yes. I had, like, black history or I had social studies--whatever it was.


Brown

You changed every day what you were going to be--


Heumann

You know, I can't--



168
Brown

--teaching to which class.


Heumann

No, I don't think so, no, no. I had five or six classes, so you just went from class to class. I had no attendant.


Brown

What did you do?


Heumann

Going to the bathroom?


Brown

Yes.


Heumann

I don't think I went, as a rule. I'm trying to remember. They did have the accessible bathrooms, actually, in the rooms. I was able to go myself. I mean, I can't now, but I could then. But I think there were definitely days when I didn't go at all, and there wasn't anybody that could really help me. The woman who was the aide that one year, she never helped me. I wouldn't even ask. I was afraid to ask. Certainly, with everything going on at that point, the last thing I thought about was asking for help in the classroom, to personally help me. I didn't know anybody who did it, number one. But I just thought this was beyond--they'd go crazy.


Impact on children in classroom

Brown

I wanted to go back to something that I asked about before, which was the impact that you think you had on the disabled kids that you taught. If you have maybe concrete examples of what kind of an impact or effect you think you had.


Heumann

Yes. It was what I was saying earlier. You know, it's something that I don't know for sure because I didn't see most of them again. I did hear that some kid--there was some article in the paper about me--and the kid did have it hanging up. The story of the parent who had met my mother on the street, who had said that I had been right, that she's sorry she hadn't listened to me and put her kid in another classroom because it was a wasted year for her kid. This other young man, who I met when I was on this job, who told me that his mother talked about me and how she was glad that she had listened to what I had to say. Stories like that. But, as a rule, I can just surmise that I'm sure it was certainly not a bad experience for the kids.

To the extent that anybody ever asked them about it, I'm sure they thought it was kind of neat to have a disabled teacher. But I guess there was this one class, older class, where I had asked them, towards the end of the year, what they wanted to do when they grew up, and most of them said that they wanted to be teachers. I remember I was upset. I said, "There are many more opportunities out there than to be teachers." Then I thought it's probably the first time most of them wanted to be in a professional position, so, hey.


Brown

Let it go.


Heumann

Try to get this job. See what happens, you know.



169
Brown

Right, right. I'm realizing, as well, when I ask the question I think I'm looking for something different, but I realize that there's no way that you would be able to see it because you don't see what happens with disabled kids when they're with you because you don't see them when you're not there.


Heumann

Exactly.


Brown

Whereas I do see the difference. As soon as they see you, when we've done site visits together, just the way that they look at you and they know who you are, or they have some inkling that you work for the President, and just the amazing difference in how they look to me. I can imagine it probably had a much larger impact than you can obviously even imagine.


Heumann

I'd love to know what happened to some of those kids. Some of them, I'm sure, are dead because they had muscular dystrophy. I had one kid in my class whose brother I had gone to school with. The brother was dead of muscular dystrophy. I can't remember if I had one or two of them, but there were seven brothers who had muscular dystrophy.


Brown

In one family, you're saying?


Heumann

Yes. The mother--there were nine kids that the mother had had, but her family, her brothers and sisters--there were eleven kids. I don't know. Eight, nine of the kids--all of the boys, with the exception of one, who became a priest--


Brown

Does that seems somehow connected?


Heumann

Well, I thought it was kind of interesting, actually. But none of the girls had it. But all the boys except this one guy that became a priest. The Rinaldis. I remember the Rinaldis. It's amazing how I remember these names.


Brown

It is amazing that you do. It doesn't seem that you could have remembered the names of the kids when you were an itinerant teacher as well as the ones when you were with them all the time.


Heumann

No, I don't.


Brown

I have two more questions.


Heumann

Okay.


Comments on teaching

Brown

I think that I know the answer, but I'd like you to talk about it a little. Did you like teaching?


Heumann

I did like teaching. It was a little frustrating for me. There were a couple of things going on. One, I was the president of DIA at the same time, so that was a lot of work. One of the


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criticisms that still goes on in the school about education is how teachers don't work together, don't collaborate together. For me, as a new teacher, I really had no support. The only thing I thought about when another principal, a vice principal, came in the classroom, was not that anybody was coming in to sit down and observe me and then have a meeting with me to talk about "try this, try that." But they were going to write me up. I didn't think, except when this one incident happened, I mean, I had been evaluated before, but it wasn't constructive.

I think the kids did well by me. I think I taught in a grade level that I really enjoyed teaching. I liked the second grade because the kids were old enough and not too old. I really felt that I learned a lot from my father. I mean, I felt in that classroom that there was more of what my father had taught me being taught than anything else. I would go back and think about what my father required of us, and it was always a lot.

So the kids ragged on me for the amount of homework they got. We were required to give homework every night, and I did give homework every night. It wasn't anything uniform. We all didn't give the same kind of homework. It was, okay, so what am I going to do for homework? I tried to do some innovative things, outside of giving the kids math problems. I remember I had the kids watch--what was it called?--not "Sesame Street" but the program that came on after that.


Brown

"The Electric Company"?


Heumann

"The Electric Company," so they had to watch "The Electric Company," and they'd have to pick out five words from "The Electric Company" and either write five sentences or a story or different things like that. At least then, I figured, okay, they're watching TV, which is what they're going to do anyway. But at least get them to watch something which they'll learn something from. I really enjoyed working with the kids.

I always liked the kids who had the most problems. Those were the kids that I was always most challenged by because I felt if I could help those kids, then I was really going to make a difference. The kid who had the most difficulty in my class--I don't know what happened to him, but I know that--I actually got a friend of mine, Jack Geckelman, who was a teacher, to take David home on a couple of weekends. Did I tell you this?


Brown

[no audible response]


Heumann

David had stolen money in school once. He had seen the school psychologist, and after his visit with the school psychologist, there was an announcement on the intercom system that her wallet was missing and that anybody who found her wallet she would take out for ice cream. She came to me and told me she thought it was David because she said, "Because I've looked"--and then the wallet appeared. She came back to me and said, "I thought it was David because it was after he left that the wallet was gone, and I tore the place apart, and I looked in the closet" and blah--blah-blah. Then she found it in the closet. But she took him out for ice cream.

Jack took him home a couple of weekends. One weekend he stole fifty or a hundred dollars, and Jack never brought him back again. I said, "Jack, you know, talk to him. Confront him directly on it because he needs to know that you think he did it and that you can't trust him." But he never did. Never talked to him again. I mean, I talked to him, but


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I also felt like what had happened between Jack and David was between Jack and David, and that Jack needed to say something to him. But, you know, of course, he did something bad, and he wasn't confronted on it. It was fifty, a hundred, but it was a lot of money for a seven-year-old kid to take.

Then I heard that he was arrested in the fourth grade for stealing a car. He wasn't any taller than me, sitting in my wheelchair. I remember people saying they don't know how he stole the car because he had to be, like, way down. But God knows, he was a smart kid. It's really a shame. Mrs. Graham and I liked David the most because he really was a smart kid. There was no father in the family. His mother was a prostitute. His grandmother was an alcoholic. His aunt was a drug addict. His brother was mentally retarded. The older sister was frequently truant, taking care of the kid.

I remember thinking, God, this is like out of a social-work book. He was known, obviously, throughout the school for his problems. He always stayed in the after-school program. One day he hid in a closet, and he said he wanted to sleep there overnight. I remember thinking, I can't believe I'm having to send this kid home. Let him sleep in the frigging closet. We had a bathroom there, you know. He could sleep there, as far as I was concerned. It had been a preschool class, so they had a bathroom there. I'll give him food, stick a TV in there.



[Tape 12, Side B]
Heumann

He had measles or chicken pox. He had spots all over his face. I remember I had to tell the nurse about it, and so they sent him home. One of his relatives came to pick him up. I remember him running around the hall, like he was climbing the walls. He didn't want to go home. I wasn't allowed to keep him in school because he was contagious, but apparently he wasn't contagious anymore because once it comes out, he's not contagious, but it's dangerous for the kids to be out; they need to be home. Kids would come in and tell me they'd seen David outside. He didn't come to school, but he was outside. I don't know what happened to him. I would have liked to find out about him, though, if he's still alive. How old would he be now? It was '72 that I had him in my class, and he was seven, so he'd be pretty old, actually.


Brown

My age.


Heumann

Yes. I don't know how to find him. All right.


Heading to graduate school

Brown

So the reason that you stopped teaching was to go to graduate school?


Heumann

Right.


Brown

Did you intend to go back to teaching at that point, or were you already thinking in terms of working--



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Heumann

I didn't intend not to go back. I don't think I could answer affirmatively that I intended to go back, but I clearly hadn't thought of not going back. I think, had I stayed in New York and gotten my degree at Columbia, especially in what I got it in--was accepted in community organizing. I may well have gone back. I think it would have given me some additional skills. Who knows? This is all speculation. I could have gone back in that kind of position, you know.

But in California, once I was there, I didn't look to go back to New York. I didn't have a credential in California, and I would have had to get another credential.


Brown

With more stringent requirements?


Heumann

No, I doubt it. New York City probably had the most stringent requirements in the country.


Brown

But your New York credential wouldn't transfer to California?


Heumann

No. Most states didn't transfer.


Brown

So you would have had to take tests again?


Heumann

Yes, I'm sure. I don't know what they were, but at that point I didn't think about it any more, because I came out to D.C. I did my work there, and then I came to D.C. At that point, it was, like, gone. No one calls you. No one from the Board of Ed called to say, "What's up? What's going on? Two years are up. Almost finished? Ready to come back?" Right. You were another number! They didn't care. I'm sure it just happened to anybody. You took a leave--because I was on leave.


Brown

You said there's a lot of burnout in the first few years, so probably people would say they were leaving to go to graduate school, and maybe they did. Probably a lot of people didn't come back after that.


Heumann

Right. That's still true today. You should be a teacher. They're having so much difficulty recruiting teachers.


Brown

Well, I'll have a lot more experience when I come back from the Peace Corps.


Heumann

Yes, yes.


Brown

Anything else you want to say about your teaching job? Then we can call it an interview.


Heumann

No, we only talked about adult ed. We didn't talk about any of my college instruction. We didn't talk about the course I taught at Berkeley.


Brown

Oh, no, no, no. I'm sorry. I misunderstood. I thought you meant teaching that you did while you were in college.


Heumann

No.


Brown

So that's that. See you next time.



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IX. Disabled in Action, New York City, 1970-1973

Disabled in Action forms in New York City


[Interview 9: February 15, 1999] [Tape 13, Side A]
Brown

So tell me how Disabled in Action in New York got started.


Heumann

During my lawsuit for the teaching position in New York, as we had talked about, there were lots of people who were interested in what was happening. I was getting a lot of phone calls and a lot of letters, just people expressing interest. A number of my friends and I had--I think for the years previous, for three or four years--had been going to different meetings for different organizations, trying to find a place that we felt represented what our interests were in a political organization.

We had been involved in a couple of different groups, but they, from my recollection, tended to focus on issues--an issue, an architectural barriers issue--they weren't organizations that really spanned cross-disability and cross-issues. We were really interested in an organization that did that: crossed over disability lines and crossed over issue lines.

So as we were moving forward with this lawsuit, I think Denise McQuade and I and a couple of other people decided that maybe what we ought to do was to try to start an organization. The way we would do it would be to gather up all the names of the people that had been writing to us, plus friends and other people that we knew, and invite them to a meeting, which happened at Long Island University, and see, basically, if there was an interest in starting an organization.

So we did that. We had about eighty-some people who came to the meeting.


Brown

That was the one in May?


Heumann

No, I think it was in February or March.


Brown

Because there was a meeting in May in 1970.



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Heumann

It was earlier, I believe. It was when we formed the organization, which for one week was called Handicapped in Action.


Brown

For one week?


Heumann

Oh, I hated the name, so I lobbied everybody on the phone to change it.


Brown

And it worked?


Heumann

We had a democratic election, which we democratically changed [chuckling]. Yes, I thought Handicapped in Action was much to retro. At that point, in the seventies, "disabled" was not a word that was being used a lot here in the States, but it was a word that was being used in Scandinavia. They had already done their analysis of what was wrong with "handicapped," so it seemed that if we were supposed to be starting a progressive organization, starting it with the word "handicapped" was not exactly on the right track. So we changed the name. I really do think it was a week that the name existed as Handicapped in Action.


Brown

How did you know what the Scandinavians were doing? Were you already in touch with people internationally at that point?


Heumann

No, just from reading I got a lot of newsletters. Accent on Living might have had a piece in it. I hadn't been to Europe yet, and I hadn't really, to the best of my recollection, met any people. It must have been from readings because I do definitely remember that I knew what the issue was around "handicapped" versus "disabled."


Brown

And you were already using "disabled" to define yourself?


Heumann

Yes, I believe I was. It was maybe in transition, but I can't remember whether I was. I have to go back and look at the articles to see how I defined myself, but I probably was. At any rate, so that's how Disabled in Action started. We had a meeting, which was cross-disability and was intended to deal with cross-disability issues.

Have you talked to Frieda Zames? You should talk to Frieda because she'd have all the original documents. We worked on our bylaws and our board of directors in the very beginning, obviously, and I assume if anybody has got the documents, it would be she.


Female-dominant Board of Directors

Heumann

At any rate, the board primarily was made up of women. I believe we had two men on the board, Jimmy Lynch and Larry Weissberger. Larry was a social worker, and Jimmy had muscular dystrophy. He passed away. I believe it was Frieda Tankus and Bobbi Linn--but I'm not sure whether Bobbi was on the original board--Roni Stier, Denise McQuade, Susan Marcus. I don't remember everyone. It wasn't that big a board. Same names?


Brown

Pretty much. Frieda had a brother named Martin.



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Heumann

No, Morton. Morton Tankus.


Brown

What about Pat?


Heumann

Figueroa.


Brown

Denise Figueroa?


Heumann

Denise wouldn't have been involved. Pat wasn't on the original board. I don't think there were more than two men, really. It was kind of a joke that we put these guys on, so that it would be integrated. Kind of like WID used to be called the Women's Institute on Disability.

At any rate, we over time structured ourselves in a way that we had committees, and the committees focused on a wide variety of issues. God, I wish somebody had all of that. I think we had a transportation committee, we were dealing with physical access issues, we had a committee on sheltered workshops, we were dealing with the Jerry Lewis telethon.


Committee structure

Brown

Did you have one on education?


Heumann

I don't believe we had one on education per se. We were dealing with issues that were most pressing in relationship to what was actually going on in the community, so workshops were definitely a big deal, physical access was a big deal.


Brown

Transportation.


Heumann

Transportation was a big deal. Housing, maybe. We had one on [housing], too. But we were very active. The board met pretty regularly. We had meetings, I believe, a couple of times a year for the bigger part of the organization, and I think we were reasonably democratic. We tried to move our meetings around to different people's houses, for some of those people, like Roni and myself and Jimmy, who couldn't drive. Then there were people like Denise and Susan, who could.

We might have been dealing with some benefit issues. God, it would be helpful if Frieda had any of that stuff, because if I saw it, I could really remember it better. But basically I think our method overall was we identified an issue that we were concerned about, and we would figure out a plan of what we wanted to do in order to be able to deal with it. It usually would be anything from letter-writing campaigns to meetings with officials, to testifying.



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Organized demonstrations

Heumann

We had numbers of demonstrations. As a rule, we didn't start with demonstrations. As a rule, we wanted always for people to not be able to say that we were hot-headed. We wanted to be able to lay out and say, This is what we saw about the problem; this is what we tried to do with the problem; and the reason why we were doing this was because people wouldn't meet with us or wouldn't talk to us or didn't listen to us or wouldn't make changes.

We were the first group, I think, that organized demonstrations against the Jerry Lewis telethon. That was way before anybody was doing that. We actually had some of the members who went to the telethon and sat outside the telethon and fasted, so there were hunger strikes that were going on for a day, with people with muscular dystrophy. We tried to get people who were affected by issues to be the ones to take a primary position because it seemed like if people with muscular dystrophy didn't oppose the Jerry Lewis telethon, was it right for those of us who didn't have muscular dystrophy to oppose the Jerry Lewis telethon? People like Jimmy Lynch hated the Jerry Lewis telethon.

The things that I remember, we were always working. We were doing newsletters, we were doing mailings, we got my mother involved, I think Denise's mother involved. We were always answering letters because we were getting lots of letters, and I did dictations over the phone to Denise McQuade, who would take these letters down and answer these letters. But there was a lot of stuff going on because we definitely were the more radical organization in the city at that time and, from what I could tell, really, around the United States.

CIL was an absolute nonentity on the national level. The Disabled Students' Program [Physically Disabled Students' Program at UC Berkeley]--nobody ever heard of them.


Brown

Had you heard of them at this point?


Heumann

Never, never. We knew it was going on in parts of the country. There was stuff going on in Boston, there was stuff going on in Illinois.


Brown

"Stuff" meaning protests and demonstrations?


Heumann

There were organizations that were developing. We'd get calls from people, like Nancy Kennedy. I remember Nancy Kennedy calling me. I believe I was still in New York, and I think she was at SIU [Southern Illinois University]. People like Nancy calling and just "read about you, heard about this, we're working on this." But didn't really hear much about the West, nothing.


Brown

So the letters you got were not just from people in New York.


Heumann

They were letters from different people. New York or other places. They were typically more personal letters. The people were having a problem with this, that, or the other thing, and they wanted help: what to do, where to go. I don't know if we have any of those. Does Denise have any of that stuff?



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Brown

I don't think she said she did, but--


Heumann

Well--


Brown

Now, what would you do with it? I'm assuming it's the same kind of letters we used to get at WID all the time, the same sorts of calls to the information and referral department. "My kid has a disability, and they're not let[ting] them into school" or "I have spinal cord injury and I can't get out of the nursing home" or whatever. How did you refer these people? What did you do with a letter like that?


Heumann

We just answered it to the best of our ability, referring them to people that we thought maybe could help them, or just giving them information about what we thought they might want to do. We had no staff. We all were working full time. But I don't know where the stuff is. I had a whole file cabinet with all the stuff, all the letters. Everything was filed and organized at my Willoughby Street address. I have no idea what happened to that stuff. Too bad. It would be very interesting, too. The newsletters would be interesting to look at. Frieda might have some of those. Denise didn't have any?


Brown

I didn't ask her if she did. I don't know.


Heumann

Those would be interesting because there would be a column from the president, things like that.


Governor Rockefeller's office sit-in

Heumann

I remember we had a demonstration outside of [then Governor Nelson] Rockefeller's office. It had to do with some work that was being done on some architectural barriers law. I can't remember if it was a matter of enforcement or a piece of legislation. But I remember we wanted to have a meeting with him, and they wouldn't let us in. We had this big demonstration--big in my mind, not big in relationship to any other regular demonstration--but big for us.

I remember it was the first time that we ever tried to break our way into a place. I remember somebody pushing our wheelchairs in, trying to push in the door and trying to force our way in because they wouldn't let us in for a meeting.


Brown

This was whose office?


Heumann

The governor's office. But it was in New York City.


Brown

So did you get in?


Heumann

No, we never got in. They never let us in. But we had a great demonstration.



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Involvement with Willowbrook State School for the Mentally Retarded

Heumann

I remember we got involved with the group from Willowbrook State School for the Mentally Retarded. We knew about it, but we didn't know how to get involved with them. Then one day there was a little article in The New York Times about a meeting that was going to be held around the Willowbrook situation, so we sent some people to that meeting. I went, and some other people went. We started getting involved with them.

That was a whole different group of people. They were politically really on the left. I mean, they were kind of not like us, who were just stumbling through and moving along and doing. We didn't have political ideology. We weren't based in any political organization. We were just setting up DIA, and we had progressive views. But we met there. Bill Bronston was there. He was one of the doctors. He's in Sacramento now. He was one of the doctors who had actually gotten Geraldo Rivera to come in and do the exposé.

There was a guy there named Richard Levy, who was their attorney. I believe Diane McCourt was there, Malachy McCourt's wife--you know, the guy whose brother wrote the book--ashes--current.


Brown

Angela's Ashes?


Heumann

Angela's Ashes. Malachy's wife, Diane. They had a developmentally disabled daughter. I actually knew Malachy from this group. We got involved with them. I was involved with them for a couple of years. Actually went out with Richard Levy for a while.


Brown

Ooh, ooh. Do tell. Tell the interesting part, if you want to. [laughing]


Heumann

I'll get back to that. But that was very good for us because it A) got us into another issue, institutionalization issue, which got us involved with things like [Wolf] Wolfensberger's normalization activities and some of the stuff going on at Syracuse. I think that's when I met Doug Biklen. I also visited Willowbrook with a reporter and a nun. I remember going out there and visiting it. They weren't going to let me in because I was in a wheelchair.


Brown

What was their reasoning?


Heumann

I could get hurt. Something could happen to me. Me, I was afraid they weren't going to let me out. That was my fear once I got there. They wanted me to sign a piece of paper to say that if anything happened to me, they weren't responsible. I don't believe I signed it. I believe I said to them, "You're not asking these people to sign a paper like that. I'm not going to sign any paper like that." So I don't believe I did.


Warehousing of people with disabilities

Heumann

But we did go in and visit. Of course, at that point it was better than it had been because this whole exposé had occurred. It was a pretty bizarre place. I remember they had a room


179
for babies, like below three. There was this big room, and they had these mats laid out all on the floor, and they had these kids laying on the mats, laying off the mats. They had televisions that were mounted on the wall, and the staff was sitting around, doing nothing with the kids, really.

Then there was a wall. I asked what was behind the wall. It had a door, you know? So they took us in there, and there were all these babies in these cribs, tied in the cribs. Kids with hydrocephalic conditions and just all kinds of kids either tied in the bed or just in the bed. But there was nothing going on. I remember when we left that unit, they said it was very important to wash your hands because disease was caught here, and you had to wash your hands really well so you didn't have to worry about contracting any diseases. But I remember this starkness of nothingness going on there.

Then we went and visited another room, where people were older. There was basically nothing going on anywhere. We visited this other big unit, where there were more adults. They were dressed. There were no people sitting around undressed like you'd seen in the exposé, but there were lots of people, nothing really happening, people kind of sitting in corners, rocking, standing, sitting on the floor.

Then we went to this other room--big, room--where there were primarily people laying in what I called Eliza Doolittle flower carts. They were like wagons made out of, I think, wood. They literally were like a wagon. They had wheels on them. There were people just laying in these, all contracted. I went over and tried to talk to some of the people there, and it was like they were dead. They were not dead, but they were dead. They hadn't had any interaction for so long that they didn't track fingers, they didn't respond to snaps, they didn't respond to anything. They were just lining this room, like in rows. But there were a couple of people there in that room who could walk. I remember this one woman--or woman maybe not so young--was sitting in a rocking chair. But, again, it was this lifelessness everywhere, this kind of insanity.


"Beautiful building" and functional people with disabilities

Heumann

Then they took us to this other place. It was so bizarre. It was another building, not very large and not many people in it. Very active. They had a garden. Disabled people. Had a garden. They had a fish tank. They were this group of living, disabled people who were given a lot of support and nurturing and were dressed well. The room was decorated well. It was like so totally bizarre. In the middle of this hellhole was this beautiful--I mean, "beautiful" is definitely an exaggeration of what "beautiful" is--but relative to that place, it was the beautiful part of the place.

I remember just thinking how totally crazy this was. That was very important for me because I had worked with some people with cognitive disabilities. When I had gone to elementary school, there were some kids who had cognitive disabilities, and then, when I was teaching the first year I taught, and when I went to camp--so it's not that I didn't know any people with cognitive disabilities--but the people I knew were primarily still living with their families. Although the system didn't have high expectations for them, they


180
were with their families. They were more than less doing well with their families, sisters, brothers, things like that.

This was just people who maybe had been abandoned. You didn't know the story behind why everybody was there, but it was very compelling. When I think about things that I remember, that visit is like it happened yesterday. So we did a lot of work with them, with that group. I can't remember its name. I don't remember. [Policy in Action Coalition (PAC)]. But Adrienne Asch was involved with them, too. I think we must have gotten her involved somehow.


Brown

You already knew Adrienne?


Heumann

Yes. I think I did. I don't remember.


Brown

Was Joe Shapiro involved with Willowbrook at that time?


Heumann

Joe Shapiro, no. Nobody knew anything about Joe Shapiro. Joe Shapiro didn't get involved until the eighties.

But the thing in New York was that everything was big, so it was huge. There were thousands of people there, and I hadn't seen the whole place, for sure. I definitely think it was two to three thousand people there. Maybe I'm wrong, but I don't think so.


Brown

What was their explanation for why the people that had the, quote, "better treatment" were in such a different situation?


Heumann

I don't know that they had an explanation. It was just these were people who were clearly more articulate. These were not people who had significant cognitive disabilities. These were people that you could see the staff and others could relate to easily, without a lot of services. My recollection was some of them might have been mildly retarded, but not all of them. They were just regular kind of people who might have been put there for who knows what reason. Because lots of people were put there.


Brown

Were a lot of those people people who just had physical disabilities and their families didn't want to deal with them?


Heumann

I wasn't there long enough to find out why they were there. But it was typical in those days, where people would just suggest to families that they put the kids in an institution, or the families couldn't take care of the person, for whatever the reason was, and they wound up in these different [institutions]--I mean, Willowbrook was just one.


Brown

So it wasn't just for people with mental retardation?


Heumann

It was significantly for people who had cognitive disabilities, really. Most of the people that I saw there. Of course, you know, when you see people who have been in a place like this for so long, they might have been slow, just because of economic situations--not having the appropriate stimulus or support at home--but clearly not everyone in that place had significant cognitive disabilities. They were much more engaging, much more alert. You could interact with them. But you could also tell that many of these people, with a little bit of support, were right there to be able to interact.


181

I met Bernard, this guy there named Bernard--whom Bill would know--I can't remember his last name now. [Carabello] But he's still active, I want to say with UCP [United Cerebral Palsy]. He became friends with Geraldo Rivera.


Brown

He was an inmate?


Heumann

Yes. Right. He actually, I believe, was on Geraldo's show a number of times. He was an example of a young person who had been there a long time and--you know, might at that point have some mild cognitive disability--had cerebral palsy. But I think for many of us in DIA, the Willowbrook situation really epitomized what could be happening to people. It also, for us, was the fact that we really did want to be a cross-disability organization, and so it really did enable us to do work with that group.


DIA sheltered workshop committee

Heumann

Neil Jacobson was on the sheltered workshop committee. I mean, here you had this group of young people. We were in our twenties. But we hated sheltered workshops because they had tried to get so many of us into a sheltered workshop. Stevie Hofmann was somebody who was also very actively involved. He's in California now. But Steve, I believe--and Carol Camarata. I think Carol actually was sent for an evaluation at a sheltered workshop. I think she was a quad polio. They wanted her to do something like stuff envelopes, and she couldn't use her hands. I mean, these bizarre stories. I think it was Neil and myself and Steve.

Neil Jacobson and Stevie Hofmann. Steve Hofmann had cerebral palsy. He was significantly involved, motorically, speech-wise, with his legs. I think he also was sent to a sheltered workshop for an assessment. Well, first of all, nobody should have been there, period. But the lunacy of it was that they were asking people to do things that there would be no way they could do, and so then you would be evaluated and paid below minimum wage because you couldn't produce the number of pieces that you needed to produce to be competitive. Well, of course not. If they couldn't use their hands, how could they be stuffing envelopes and doing ridiculous things like that?

So that was one of the reasons why we were involved in that issue, because some of the people in the organization just felt strongly about it. I remember one day we went to visit a sheltered workshop. We had a meeting with one of the executives at the sheltered workshop. I don't remember which one. In Manhattan, though. I remember this guy telling me that people had a choice. No one forced people to come to a sheltered workshop. If they really didn't like it there, they didn't have to come. I remember saying to him I didn't think people were really being given a choice if their choice was staying at home or coming out, at least being here. It didn't seem to me that was a choice.

We were dealing with issues around minimum wage.



182

DIA on the national scene


[Tape 13, Side B]
Heumann

We were involved in many different activities. I was there three years. I remember broad things. One of our first activities was going down to the President's Committee [President's Committee on Employment of the Handicapped]. Did we talk about this?


Brown

This was the first time that you went?


Heumann

Yes.


Brown

Was it a big struggle with the letters?


Heumann

Right. Yes, you did hear something about it.


Brown

No, I studied. I just did my research on it and read some articles on it.


Heumann

Okay. We were kind of candy-store approach and worldly approach or kamikaze approach. It was just, like, okay, there are a hundred issues. Some people would say, "Focus on two," but myself and others were kind of more into focus on many. I think in part it was because we wanted to get exposure. We kept searching, and it was really searching for where is the power? Who are the power brokers, and how can we influence them? I think you kind of naturally--I don't know about for anybody else, but for me and some of us that were working on this--it was a natural evolution to move out of just dealing with city issues. When you looked at things they were impacted on by the state and the federal level.


DIA meeting at the President's Committee on Employment of the Handicapped

Heumann

We had heard about this President's Committee, probably was from Accent on Living. At that time, Accent on Living, which is still around, was the main publication. A lot of us got it. Ray Cheever is a nice guy. He never was like what you would call a progressive. Ray is still alive; he'd be an interesting one to talk to because he definitely knew me.

But at any rate, we contacted the President's Committee and asked for a room to hold a meeting. They told us that we were too late and we couldn't have a room. I remember we were outraged. This is a government-run event. How can they not give us a room? They don't want to give us a room because they were afraid of what we were going to do. We hadn't even thought of doing anything, but just the fact that they didn't want us there made us feel like, Oh, well, we've got to think about doing something.

So we contacted Congressman Badillo, Herman Badillo. I don't remember whether we called him or wrote a letter, but next thing we knew, we had a room because Badillo's office had contacted the President's Committee and told them to give us a room. So we


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got down there. We held a meeting (we always were holding meetings). We had fliers. We invited people to come and talk with us and meet with us. This would have been, I think, in '71.


Brown

So you didn't know anybody on the President's Committee and you hadn't been to any of their meetings before?


Heumann

No.


Brown

Did you have an agenda? Did you want to be on their agenda? Were you on their program?


Heumann

I don't remember if we had a workshop.


Brown

It was a Disabled in Action meeting, and you were inviting people to come find out about what you were doing? What was the function of--


Heumann

That's what I'm saying. Looking at some of the newsletters would be helpful. We were down there, I think, because [President Richard M.] Nixon--it was the President's committee. You know, you thought the President would come. I'm trying to remember if it was the first year or the second year that we organized a walk-out.


Brown

It was the next year.


Heumann

Second year, right? Seventy-two?


Brown

Seventy-three.


Heumann

No, we had two actions, '72 and '73. There were two walk-outs. The one that was in '73, with Julie Eisenhower?


Brown

That was '73.


Heumann

I believe we did something in '72 also.


Brown

You know, that's interesting because Denise said that in '72 you organized the disruption of Julie Eisenhower's speech.


Heumann

That's right.


Brown

But the press--I mean, what I found, the actual article--it said it was in '73. Did she speak twice?


Heumann

It's possible, but I definitely remember doing two things. '73 was the time when there was also a Lincoln Memorial march, right? We did something the year before, in '72. That's when we had a march to the Capitol.


Brown

There was a march to Capitol Hill in '73 as well.


Heumann

Right.



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Brown

A candlelight vigil. That all happened in '73.


Heumann

Right. But there was also something that happened in '72. And Denise remembers that, too, right?


Brown

She remembered '72. She thought it was a rally, maybe, or a march? She couldn't really remember. In '73, she said, there was a march and candlelight vigil.


Heumann

Right, right. We stayed all night at the--yes, we did something in '72 and '73.


Brown

She said something about a parallel conference of sorts that was more activism-oriented, which she thought was in '71 but, again, she wasn't sure. It might have been in '72.


Heumann

Yes, that's why we've got to get the newsletters because we would have stuff in the newsletters, I think. She doesn't have any of the minutes?


Brown

Didn't ask.


Heumann

Okay. She's probably the best one to ask. At any rate, we began to get to talk to people. You had disabled people there who were, as a rule, the more conventional types.


Brown

This was at the President's Committee?


Heumann

At the President's Committee meeting.


Brown

Are we talking about the first one?


Heumann

In general, but in '72 and '73 we used it more as a place to get people to come. Like the demonstrations in '77, anything where there was a place made it much easier for us because we didn't have to deal with transportation. So we rented rooms in the hotel, we put twenty-nine thousand people in the rooms, [and] that was that. We had our headquarters there. Ralf Hotchkiss was there. When did Ralf come? I started teaching in September of '70, right? I think I met Ralf in spring of '71. So he might have even been there with us for the first President's Committee meeting, because he lived in D.C.


Brown

Had you been to D.C. before you came down for the President's Committee?


Heumann

I don't think so. I dated Ralf for a while.


Brown

Ooh, ooh. Dish.


Heumann

I'm trying to remember if I had been down there before the meeting or then went back to see Ralf a couple of times. At any rate, we were learning the lay of the land. There were a lot of meetings. We went to those meetings and some of their workshops. Things cost money so we as a rule didn't go to the dinner. It was a time to organize, learn, try to have some influence, but just, basically, get on the national scene. I don't remember if we went over to the Hill the first year.

But the second year would have been '72, in May. The election was in November of '72, right? Yes. I think some of the people from PRIDE might have come down.



185
Brown

What was PRIDE?


Heumann

I don't remember what it stood for, but was run by a guy [Kurt Shamberg]. Ann Cupold would remember his name--and Ronnie, Ron Pagano, Ann's first husband. They were in Queens. They were smaller than we were. The guy who was the president wasn't disabled, but we did some stuff with them.


Brown

They weren't just a general disability organization?


Heumann

Yes, yes. We did work with EPVA [Eastern Paralyzed Veterans of America], Joe Mandela. Joe was great. He died. He was a very nice guy. We had meetings up there. There was another organization we belonged to. We were doing work with Eunice Fiorito because Eunice was the head of the Mayor's Committee. She had come in from Chicago. [pauses] I'm trying to remember these dates. In '72 something had gone on with Nixon already. I think he had already vetoed the bill once. That's when we went--and my parents with us. Did Jonathan talk to my mother about any of this stuff?


Participation of Heumann parents in Washington marches

Brown

About action? I don't recall. I don't think so.


Heumann

Too bad, because my mom and my dad drove down and helped us get around. Yes, they drove down. Yes, I'm pretty sure they did, both in '72 and '73.


Brown

Sorry, in New York?


Heumann

No, in Washington.


Brown

How did your parents feel about protesting and rallies and demonstrations?


Heumann

They were fine. They were not big on antiwar activities, but I don't think they really felt foreign about it because in their own right, that's what they had been doing years earlier. Just didn't have demonstrations. They had meetings. I don't ever remember there being any conflict. You were always supposed to be nice. Be nice. Which was my motto, be nice. Be nice until you couldn't be nice, but I figured I was nice, and I did that all the time.


Brown

Don't run over their feet.


Heumann

Exactly. You only do it if it warrants it. If being nice made them open a door, then you said, "Thank you." If it didn't, you slammed into 'em! With a smile, "Sorry."


Brown

[chuckling]


Heumann

What didn't I say that was clear? No, but that was always my--really, be nice.


Brown

Until that stops working, and then ram 'em.



186
Heumann

No, my parents were involved--I actually think in '72 we were definitely followed. I remember my father even saying something about how somebody was out there, taking pictures of the demonstrators. I've never looked up my FBI file. Maybe I don't have one, but I remember when my father said that. "There's people there taking pictures, not just newspaper reporters." I thought, well, that's kind of amazing; my father acknowledged that something like that could be going on.


1972 and 1973 Washington rallies

Heumann

When we had the demonstration in '72, where we had the rally to the Capitol, that was organized by us and a few other people. The one in '73 was a very big action. United Cerebral Palsy, Nancy Wesselman I want to say. Denise Jacobson would know her. I think Denise was actually doing work with Nancy then. They were very helpful. They put time and money into organizing that. Eunice's office was very involved.

I had met, through the President's Committee, people from different parts of the country and D.C. organizations, and so we were getting those organizations involved. People like Eunice were involved with groups like the American Council of the Blind. She was involved with some of the national groups. But in '72 it was a smaller group of us. I think the march that we had might have been a hundred people. It was us getting not just our people, but we were getting sympathizers from the President's Committee. There were thousands of people there, so you could pull off a few people.


Brown

Where was--the march went--


Heumann

From the Hilton, Connecticut Avenue, to the Capitol.


Brown

In '72.


Heumann

Yes, and '73. Seventy-two was the first one.


Brown

What did you do when you got to the Capitol?


Heumann

We had a press conference, and Senator [Harrison] Williams spoke. Ralf was helping us. Ralf was here. I think Ralf knew Lisa Walker, and I think that's how we first met. I'm pretty sure it was '72.


Brown

Did you speak at this press conference?


Heumann

At the rally? Probably.


Brown

I mean, you were president. You must have.


Heumann

Yes, I was president the whole time.


Brown

You were already speaking quite a bit and were very comfortable speaking in public?



187
Heumann

Oh, yes.


Brown

Did you prepare your speeches ahead of time at that point, or those were mostly off-the-cuff comments?


Heumann

I don't remember. Probably notes, but no, I didn't do written speeches, for sure. Kitty [Cone] was always the written speech person. I could never hold the paper up high enough to my face to be able to keep my eyes up, and I always thought it was terrible to keep your head down. That's from my singing. You never keep your head down. You always look out. My voice lessons really helped me a lot. My theater work that I did helped me a lot in everything I did because I was used to presenting.


Brown

And projecting.


Heumann

And projecting. I did plays since I was eight years old, and so that's really where I learned how to do that. I guess when I was younger, I'd be nervous looking out across a crowd and I cried [chuckling]. They used to call me Sarah Bernhardt. I did tell you that.

No, with DIA, we were definitely considered a militant organization. We were called, by some, communists, literally, which we used to laugh at.


Brown

Why?


Heumann

Because we were very strong in our actions, because we disrupted things, because we were not status quo people. We didn't just come to meetings. We yelled out at meetings, we spoke at meetings, we challenged people, and because they didn't know anybody like us before--at least in our generation.


Brown

Was that also a way of saying that they disagreed with you?


Heumann

It was a way of trying to discredit people.


Brown

Because if your communist--


Heumann

Because if you were a communist--. Right, and also people would say, Well, the system couldn't be so bad; look where you are now. You wouldn't have gotten here without the system. Of course, there was truth to that--not that the system was so good--but there was truth to the fact that there was something in the system that did let us go to college and various things. There was a system to work with, against, push, which is what we would say. But I remember hearing people say things like that. Basically, it was always a way of trying to minimize us.

On the other hand, I think I was asked to be on the board of the National Rehabilitation Association in '72 or '73, and it was in '72 that I met people from Rehab International, when I was at the President's Committee. That was a great place for networking. I think the traditional organizations were clearly seeing, from our activities and other groups, that they had to start looking at doing something differently.



188

Using the media

Heumann

The lawsuit really was the backdrop around much of this. There had been so much publicity around it that we were able to continue to get and we learned also how to use publicity. We weren't experts at it, but we did reasonably well for the time, to get coverage. Really, a lot of the coverage in the sixties and seventies was much more on the health page and the socialite page. We actually had a demonstration once outside The New York Times. We had a demonstration outside The New York Times around the time of the Nixon demonstrations, I believe, because they weren't giving us appropriate coverage, and people said, "You never demonstrate outside of a newspaper because then they'll never cover you."

We said, "Well, it didn't matter. They weren't covering us anyway. So the worst thing that would happen is they wouldn't cover us any more." But actually I think we had a meeting with them inside, as a result of the demonstration. It didn't make a dramatic change, but it did allow us to get in there and talk with them and explain what our concern was, that they weren't taking our issues seriously, like a civil rights issue, and that's what this was.


Roots of the civil rights model

Heumann

A lot of what we were talking about all the time was trying to elevate our effort from a medical model, charitable model to a civil rights model. Those of us who were activists had always been active in the disability rights movement. That's not what it was called years ago, but those of us who started--at least in these organizations--there were really no people who had become disabled later on in life. We were all people who had been disabled from birth or early on. That was a different type of person from us, a Kitty Cone or Paul Longmore or a Harlan Hahn or an Irv Zola, all of whom had been brought up in the nondisabled world. In some ways they had avoided--because they didn't see it--you could say, well, they didn't avoid it, but they did avoid it because there were things going on they didn't participate in.


Brown

Like?


"Born-again cripples"

Heumann

Well, they weren't, I don't think, involved with disability rights organizations. I don't think so--until like the seventies, eighties. As Kitty got more disabled, then she got more involved. That's not a criticism. I just think it's a statement of fact that they had disabilities that really allowed them, for various reasons, to be mingling more in the nondisabled world. They had a consciousness, I think, about stuff going on for them personally, but I don't call Kitty this, but I definitely call Paul and Irv and Harlan "born-again cripples."


189

I remember last year, when I was doing a lecture with Paul, and I called him a born-again cripple, he said, "What?!" I said, "It's true, you know." Again, it's not a bad thing. It's just that they were very well established in their professions and for whatever the reason was, now they took a more personal interest in it, and they were well established and they could do that.

The first time I ever remember really feeling that was when I was at one of the post-polio conferences in St. Louis. We had organized, with Ginny [Laurie], like, a discussion group. They had come to the meeting, and they were talking about a philosophy around disability. I remember sitting and talking to somebody next to me, going, They feel like they have invented all of this. This is stuff we had talked about ten years, twelve years, fifteen years earlier. But, because they were academicians--they had PhDs and they were men--but at any rate, yes, that was something we felt numbers of times. It's kind of the same level of things that still goes on today. It was, like, the women didn't have the same advantages.

So some of this stuff was very obvious. To talk about some of the more obvious forms of discrimination that were going on, those were things we definitely had talked about in DIA. That was really a time for us in DIA to really get together amongst ourselves, with an organization, that was supposed to be politically focused, as opposed to being in school or in camp, where you weren't there for that reason, although we did talk about those things. Here, it was an opportunity to talk about problems and reasons for problems. Really to begin to also look more at economic issues and the amount of money that was being spent in certain places and not here.

But then in '72 that's when I met people. I don't remember if I met Barbara Duncan in '71 or '72. The first time I traveled outside the United States was in '72. We used to have some of our DIA meetings, I think, at Bulova Watch School. Bulova Watch in Queens had a basketball team, wheelchair basketball team. We used to go out there sometimes for the wheelchair basketball games.


Foreign travel sparks awareness

Heumann

Then there was a group of them that were going over for the Para-Olympics. The Olympics were held in Munich, but the Para-Olympics were held in Heidelberg. They were held after the Olympics. I went with my brother Rickie and my friend, Pat Ford, and Teddy Mosier. Pat Ford is in Michigan now. We went to Germany, and then we went to Sweden, and then I came back on a Friday, and on a Saturday I left for Australia, to go to Rehabilitation International's World Assembly meeting.


Brown

In '72?


Heumann

Yes, because I left in '73, so it was definitely '72. I think so. But then I also had a six-week trip--


Brown

That was in '73, when you went to Norway and Sweden.



190
Heumann

Yes, before I went to Berkeley, yes. Anyway, in '72 going to Germany and going to Sweden--we haven't talked about that? Germany and Sweden were very important times for me. One, because going to Germany, I also visited my father's town and met some people who knew my father and actually visited outside the house that he had been born in and grown up in. I don't know where the pictures are from that.

At the games is when I first got to see lots of disabled people from all around the world. There were people there from eastern Europe, who came in wheelchairs that were just terrible. The European wheelchair companies and the U.S. wheelchair companies, I remember, were giving people wheelchairs, just so they had better equipment. But the games were great. I mean, it was very exciting. I do like sports, and I love wheelchair racing, and I love wheelchair basketball and activities like that. So it was a great opportunity to see all kinds of games going on with people from around the world but also, then, to talk to people about what it was like living in their country and what it was like living in the United States, and got talking about benefits.

Not that I went over there at all with an agenda to talk about what people got, but it was kind of a natural discussion. You start talking, "What's it like living in your country?" There were lots of people who spoke English, so we could talk to people from different countries who spoke English.

That's when I really began to see that there were other ways of doing business. We still, already, had a more civil rights approach, even though in '72 we didn't really have many pieces of civil rights legislation. But at the state level--in New York, for example--we did have pieces of legislation that dealt with architectural barriers. We did have the 1967 federal legislation on curb cuts and buildings. We were working on legislation. We were working at that point on the Rehab Act. Not so much, though.

But we were talking about what the problems were that we were facing and how we didn't have enough money for certain things and about how things were accessible and how we couldn't do things that we wanted to do. In our discussions about what we felt we needed, going into another two countries and seeing that while people were in similar situations, there were interesting differences. While one could define some of the differences being motivated around what some might call paternalism, they still had basic--I remember thinking they've still got a basic structure--where if the people were more aggressive, you could do more with what they had.

We had aggressive people without a lot to do with. Sweden in particular--I don't know how, but I started talking to people. We were there for a week, and they may have even had some places that we could visit to look at some programs.


Fokus Society

Brown

Like accessible housing?


Heumann

Yes, they had housing already then. They had Fokus. It's called the Fokus Society. The Fokus Society, I believe, they did it through a telethon and government money, and they


191
had accessible, somewhat integrated apartments, where people could live in their own apartments, and they had a unit where people would get their attendants from. Well, of course, that wasn't where we are today, but at that time there wasn't anything like that in the United States.


Brown

And those attendants were paid for?


Heumann

Yes.


Brown

And everyone in Sweden and Germany that needed it could get help?


Heumann

Now I'm just talking about Sweden, and I'm not talking about everybody. I don't know what they had overall, but I know they had some programs. Wolfensberger, who was big in the United States, actually, the Scandinavians say ripped off their ideas. There was stuff going on there in the fifties and sixties and seventies. So they were already, with their deinstitutionalization movement, and they did have services in the community. I don't know the full scope of the services, and they weren't like they are today, where they are more consumer controlled.



[Tape 14, Side A]
Heumann

I think--I'm not 100 percent sure--that the people were involved in the hiring in the Fokus units, but I believe they were involved. You could see that there were problems because people had to share attendants, and just having to share things meant that you couldn't do everything you wanted whenever you wanted to. But still, for me, who had nothing and had to use either my parents or people I had to rely on at school or my apartment, it was an interesting approach. I didn't feel completely comfortable with it, but I remember talking to people there and some of the social workers, and just thinking, Oh, my goodness, this is just amazing. Very different approach. Sweden economically at that point was better than it is today, so they were open to ideas. They had national organizations of disabled people, more than we did, and they were being supported by the government, which we, except for PVA, weren't--Paralyzed Veterans of America. And so it was all these different things.


National health care

Heumann

They had national health care, which they had in Germany. I knew a little bit about that. You heard about it, but you certainly didn't read articles in the newspaper on a regular basis, Let's look at the European health care system because maybe they provide better services. So it was coming back, and then I went to Australia. So within two months, I visited three countries. That was kind of an amazing experience. They were each different in their own right, even though two were European.

The Australian visit was--they were more [United States] U.S., Germany and Sweden--but nonetheless, they had a form of national health insurance also. So it really allowed me to begin to question and come back and talk to people in DIA and other places more about


192
the similarities and differences, and also to begin to see that there was this international movement.


More on DIA committee structure

Heumann

Anyway, so I think it was very helpful for me as I was doing my work in DIA. A lot of my work--I learn things and come back and try to do things with it. We were doing everything by the seat of our pants, as we still somewhat are--not as much--because now we've got laws and things. But as I was saying earlier, people have different interests. I think on a certain level it's see what different people are interested in and try to get people who might not have come out for A but would come out for B.

I think health care was one of the issues that we were dealing with. I think we had a health care committee. I think we had an employment committee, too. We had many more committees than people [chuckling]. We had lots of committees, and some people were involved a lot and some people were involved a little, as [in] any organization. But I think it was always incredible because we never had a lot of money. We didn't do fund-raising. I think we had dues but not a lot of money.


Brown

So who paid for you to go to D.C., when you all went to D.C. together?


Heumann

I think we paid ourselves, with our own money.


Brown

And registration?


Heumann

I don't think it cost anything to register to go to the President's Committee. It cost if you went to meals, if you went to the luncheon, if you went to the dinner. I don't remember when I started going to a couple of those, but people would just give me tickets.


Brown

Did you have an attendant that you paid? Or how did you deal with attendant stuff? Were there DIA members who could do attendant work for you?


Heumann

I was stronger at that time and thus able to be more independent. I would ask different people to help me. We shared hotel rooms at that time so getting help wasn't too hard. It might have just been whoever was there helping me out, without anybody in particular. Actually, Jan Balter--she's dead. She probably helped me on a number of occasions.


Brown

I was just curious if you had someone that was living with you and went on trips with you or if you found volunteers catch as catch can. Because your brother didn't help you when you went to Germany to the Para-Olympics.


Heumann

No, Teddy helped me then. When I went to Para-Olympics, Teddy helped me. My brother did help me, but not with the personal stuff, but he helped with pushing my wheelchair and all that kind of stuff.


Brown

You took your manual, too?



193
Heumann

Yes. Well, I'm not sure, but I think I only took my manual chair.


Brown

Do you remember having any problems on the plane?


Heumann

Oh, no, we had no problems because, remember, we went with the wheelchair team.


Brown

Oh, right.


Heumann

We had no problems because they were a-scared of us. They had all these strong guys that carried us on and off the plane. We didn't even use aisle chairs because it was the trainers and staff that put us on and off. I do remember that. That was fun. That was great, being around all these disabled men. It was so exciting. It was great. I had never--well--I had, when I was at basketball games and things like that, and at camp. But this was, like, amazing. This was like a candy store. They were everywhere. I had never been at a place where there were so many disabled people.


DIA chapters in Baltimore and Philadelphia

Heumann

DIA, I think, for me was a very important part of my life. Again, it was something that a group of us created. It was similar to what CIL was doing, although they grew out of DSP. I left college in '69, and we were just starting the Disabled Students Program at LIU [Long Island University], and at PDSP they clearly were thinking about what they needed to do to make life easier for the students. It probably was a combination of them moving from Cowell Hospital into the community and needing different types of supports.

But we weren't there yet. Because we weren't looking at money. We hadn't been involved with any organizations that really did fund-raising. We kind of knew that it was something that you did, but when we thought about fund-raising, it was more what we knew, it was dues. Grant writing wasn't something that we knew about at that point, because all of us who worked had regular jobs. Like, Denise worked in a law firm; they didn't do fund-raising. I worked for a school system; they didn't do fund-raising. So we didn't know about it.

I think we did a lot with a little. There were a couple of other chapters of DIA that were forming. There was one in Baltimore, Bob Ardinger, who lives down here now, whose wife is the deaf woman at HUD, whose name I'm forgetting, Cheryl. But Bob started DIA down here. I actually remember coming down here to talk at a meeting they were holding to start the DIA chapter down here.


Brown

In D.C.


Heumann

Baltimore area, I think. Not in D.C. I don't know if Philadelphia started after I left. But it is interesting to see that DIA hasn't really gotten much bigger, but it's still there. Can't say that about a lot of other organizations, so there was something good about it. A lot of the people who worked in it at the beginning aren't really involved. There's a whole new group of people. But they're involved in lawsuits, and they're involved in many different activities in a similar vein to what we were doing at that time.


194

The core people at DIA went to work in independent living centers, a lot. Denise did, I did, Bobbi Linn did, Pat Figueroa did. When did Pat go on the board? Do you remember? Seventy-two, '73 maybe. So many of us moved there. DIA continued to do its community--and there were some struggles that went on over time between DIA and some of those organizations. I don't know if the personalities of the people involved were copasetic--would that be the right word? But there were tensions, styles of people.

But nonetheless, I think Frieda [Tankus] has been involved with them for many years now. We did so many different things. I think the Nixon demonstrations--we haven't talked about those?


DIA Nixon demonstrations in Manhattan

Brown

No, we could talk about specific demonstrations, if you want.


Heumann

Well, the Nixon demonstration was great.


Brown

Which ones in particular?


Heumann

All of them. They were kind of a package deal. We didn't plan two and three; we planned one. God, I thought I discussed this. I've been talking to too many people lately. But the demonstration on the second, I guess it was, Thursday?

[going through papers]


Brown

That one?


Heumann

Yes, these two. Okay. This is how these came about. The first article is "Disabled Tie Up Traffic Here to Protest Nixon Aid, Hill Vote Friday, November 3rd."


Brown

And that's from The Times.


Heumann

The New York Times. What actually happened here is PRIDE and DIA organized a demonstration. I believe Nixon had vetoed the act--


Brown

The Rehab [Rehabilitation Act of 1973] Act.


Heumann

The Rehab Act. There were many provisions in there that we felt were important. There was an independent living provision. We hadn't been involved really in the development of much of this stuff, but we heard about what was going on through contacts that we had in D.C. There is Jim Ford, Pat Payne's husband. And there's Ronnie Pagano. At any rate, Ronnie was a pretty creative guy, from PRIDE. I think the way we looked at doing a lot of our activities was we wanted them to be informational. We didn't want to just have demonstrations. If we were going to have them, we wanted fliers, we wanted things that you could give to people that they could understand. We were convinced that if people understood what the issues are, they'd be more supportive of the issues.


195

We decided that we would have this demonstration outside of the federal building in Manhattan. We never, I think, sent anybody up there to actually scout out where the federal building was. We decided that we would get a coffin, and we would dress and act as though we were having a funeral. We had fliers, thousands of fliers, that were actually [shaped like a] tombstone, and talked about Nixon killing the Rehab Act and writing on the tombstone what the specific provisions were that were not going to be enacted.

So we get up to the federal building, and it turns out that the federal building is the only building in all of New York City which is on a little island, where no traffic ever comes. It was totally bizarre. I don't remember where it was, but it was totally bizarre. We had this demonstration outside, on the sidewalk. Nobody really cared, you know. They sent somebody outside. We talked to the people.


Brown

There weren't any cars going by.


Heumann

Well, we were on the sidewalk. There were cars, but very few cars. I don't know if we were asked to go inside. Whatever, we had a little bit of press, but it was kind of a non-event. I thought we worked so hard on this, we cannot have this be a non-event, so we went in the street. The cops came. The cops had been there. What happened? Well, they didn't want us to be there, even though it was on the sidewalk, at first. Someone came out and asked who was in charge, and people said I was, and they came over, and "You're in charge. You have to move." I said, "We're not going to move." They said, "Okay." They left.


Brown

[laughing]


Heumann

There we were. We looked great, sounded great, had all the right stuff, and nobody cared that we were there. So then we went into the street. Nobody really cared much more that we were there because I think people could either go to another street or whatever, but it was having zero effect on anything. So we're sitting around. My God, what are we going to do now? The police were there, and they helped us. They said, "You should leave." We're, like, can't leave.

So then we asked one of the cops, "Where is Nixon headquarters?" So they called in and asked. I think they were told, "Get 'em out of my precinct!" So where's Nixon headquarters? They come back and tell us. So we all got in whatever we had gotten to get there, and we decide we're going to go up to Nixon headquarters, and there we are, and decide, okay, we'll take over the street. It was totally unorganized. But we still had our fliers. We had more fliers printed. We had thousands of fliers. This [showing] is it.


Madison Avenue takeover

Heumann

Actually, we were also working with the Willowbrook people. Of course, there were now real communists in the group, and they had a lot more experience than we did. But I think everybody was blown away. I'm, like, "Let's go in the street." So we actually took over Madison Avenue, and the two other streets, so we actually had shut down three streets. But some of the trucks were not happy having three streets shut down on them, so we


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decided we'd go back to one street because we thought it could be pretty bloody, so we just went across Madison Avenue. We stayed there. It was, like 4:45 in the afternoon by the time we got there, 4:30. Yes, Madison and 45th Street.

No one knew we were coming, so no one knew why we were there. Someone came out and said, "What do you want?" We said, "We want to talk to somebody from Nixon headquarters." So they sent somebody out from Nixon headquarters. "What do you want?" "We want a public debate with the President on why he vetoed the Rehabilitation Act on MacNeil Lehrer" [News Hour on PBS] or something like that. They're, like, "You're crazy." I said, "That's what we want. That's why we're here."

We must have stayed there an hour. We really did shut the city down. But we had hardly any press. It was really terrible. If it would have been any other group, A) they wouldn't have let them sit there for an hour in the afternoon, and B) it would have been all over the media. Anyway, after we stayed there for about an hour and had done what we wanted to do, we went into Nixon headquarters. We went in, and we took over the floor. It was kind of like cripples threw the Nixon people off guard. They didn't know what to do.

We were there, and we were chanting, and we were having these demonstrations, and it's four days before the election, and it's at Nixon headquarters. The police were there, but it turned out we had these really nice cops, who were not into doing anything to us because in this particular precinct, there had been a couple of cops who had been shot in the last year, and so some of the guys that we were dealing with had actually been involved in helping to get their friends to therapy at different places, and they totally understood what we were talking about: lack of transportation, dah-dah-dah-dah-dah-dah. About midnight, we left. A little after midnight.


Second demonstration with Vietnam vets in Times Square

Heumann

We were upset. We didn't get the coverage that we wanted to get. Some people said we didn't get coverage because we didn't have any Vietnam vets with us. So I called a woman named Nancy Amaday. I didn't know Nancy Amaday from a hole in the wall. I called [George] McGovern headquarters and said--their position, of course, was the right position--and we were supporting McGovern. Not really active in the campaign, but I explained what had happened, and I said, "We want to have another demonstration on Monday. We need some vets."

That's how Bobby Muller got involved.


Brown

Who?


Heumann

Bobby Muller. He runs Vietnam Vets of America. He's one of the guys who won or, I think, was a co-winner of the Nobel Peace Prize with this woman from Vermont, two years ago, on the land mine issue. Anyway, he was a big Vietnam vet, very well, known in the Vietnam vet community. She sent him. Bobby Muller and I think one or two other guys. I don't know who they were. I never saw them again.


197

We had decided that this time, we were going to meet on Times Square and we were going to march against traffic up Times Square. I remember Bobby, if you talk to him, he will talk to you about how he thought this was the craziest thing he'd ever seen or done in his entire life, and he talked to people about how crazy I was, how I was more out there than he was, and Pat Figueroa and all of us. Pat Figueroa said he was a Vietnam vet. Sure, who knew the difference? So he said he lost his legs in Vietnam. Nobody ever asked him, "Where did you see combat? What division were you in?" So he was our artificial Vietnam vet until Bobby and the others came along.

So then we marched up Times Square, shut down traffic again. It was earlier in the day this time. This time we had a lot of press, so there are more articles [leafing through them]. Do you have them? There are definitely more articles because we had the vets. This [showing] was Monday. This was Thursday; this was the next Monday.


Brown

November 6.


Heumann

Right. Sorry, this was bupkes [Yiddish word meaning nothing, peanuts] coverage that we got in The New York Times, but it was page three. No, this was the New York Post. This was the New York Post, page three, November 7th. It was a good picture. No, this was another time. But now we had more people. The first one, on that Thursday, I think we had fifty people, and a lot of them were from whatever the group was called from Willowbrook. That was very helpful.

Then, again, you know, we went into Nixon headquarters. This time, we did shut Nixon headquarters down the day before the election. They called in a bomb threat. God, I remember all these things happening. We still wanted to debate the President--


Brown

Who called in a bomb threat?


Heumann

I have no idea, but there was a bomb threat called in. We thought, "Nobody's leaving, so if nobody's leaving, why are we going to leave? It's probably not a real bomb threat." So we said, "Thanks, but we're not going to go." A little nervous for a couple of minutes, waiting for the bomb to go off. But there was stuff that was going on, things that were happening.

I think this is Jan Balter, actually, right there. This is Neil Jacobson, I think. Is this Neil? No. Kip Watson. That's Kip Watson. Where's Bobby? Was that me with the megaphone in front of my face? That's Bobby Muller right there, yes.

At any rate, they were pretty amazing. Those demonstrations were the first big ones before we had the all-night vigil--this was '72, I guess, right? In November. Then it was '73 in the spring that we had this much bigger demonstration in D.C., which I think had more like five hundred people. That's the one that UCP [United Cerebral Palsy] and all the others worked on. There, there were busloads of people that were brought in because people had money to do something. Here, for these demonstrations, we even got the van services to donate. We'd call and say, "Look, If you get us there, maybe it will mean we'll get more money, and that'll help you out." We did everything. We had no money.

But the demonstrations against Nixon were very exciting. We gave out thousands and thousands of fliers. What I really remembered about the fliers was that you didn't see a lot of them on the ground. People took them with them because they were interesting and


198
because the people that were giving them out were trying to explain--although in New York, you know, you can't give much of an explanation on Madison and Times Square as things are coming and going--but there wasn't a lot of hostility. A little bit. There was one or two cars that did scream against us and stuff, but as a rule, we had a lot more coverage the second time, as I recall, radio and TV coverage. It was a very exciting time because we realized that we really could do more and more things to get the messages out. So that was very exciting.

Then, when we organized the '73 demonstration, the big '73 demonstration with those other organizations, did a lot of work on that. We got a lot of people down there, but there were a lot more people from other organizations. There was the march again.


Disrupting Julie Nixon Eisenhower's speech, 1973

Brown

Can you say a little bit about just what actually happened?


Heumann

At the '73 demonstration?


Brown

Is that the one that started with disrupting Julie [Nixon] Eisenhower's speech?


Heumann

I guess so.


Brown

Do you remember that?


Heumann

I remember disrupting Julie Eisenhower's speech, and I remember that it was before a march. I don't remember that it was before this particular one. For some reason, I want to say that it was in '72 that we disrupted her speech. At that one, she was saying garbage.


Brown

Was it pre-planned?


Heumann

The disruption? Probably, because we had posters hidden.


Brown

I guess it would have been pre-planned!


Heumann

I don't know how much we were intending on disrupting it. We probably were intending on walking out against her.


Brown

Was it because--


Heumann

Because Nixon wasn't doing stuff that we needed, and it was a forum. I mean, again, it was our stage. We didn't have the money to organize something like that that we could make a protest at.


Brown

Was she on the President's Committee?


Heumann

Her father was in charge of it. It's all titular, you know?



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Brown

Right, right.


Heumann

It's the President's Committee, but how involved is the President in the President's Committee?


Brown

Right. So she was giving comments, and she was saying garbage. Then what happened?


Heumann

We started yelling out. People went, "Shhh! Shhh!" We were yelling out stuff about her father and why he vetoed the act. You know, different things like that. Then we picked up our posters and left, chanting.


Brown

What were you chanting?


Heumann

I don't remember what we were chanting, but whatever it was, they had never seen anything like that before at the President's Committee meeting [chuckling], and never again. Really, after we stopped doing it, it went back to its regular meeting kind of stuff. So we gave them three years of a little bit of excitement [chuckling].


Brown

So you left chanting, and then you went--


Heumann

As I said, I can't remember whether the Julie Eisenhower walk-out. If I were to bet, I'd bet it was in '72 because in '73 there was this other very organized demonstration, and we probably wouldn't have done that. But, of course, I could be wrong. Does it say we did that?


Brown

It does.


Heumann

In '73?


Brown

[reading]: "On May 4th, '73, there was an annual gathering of about thirty-five hundred people at the Hilton. About thirty persons, many in wheelchairs, left the room during remarks by Julie Nixon Eisenhower, who presented awards on behalf of the President's Committee."


Heumann

Okay. So maybe we only did it in '73.


Brown

Maybe the paper is wrong.


Heumann

No, the paper wouldn't be wrong.


Brown

So then you left her speech and went--you marched right from the Hilton?


Vigil at the Lincoln Memorial

Heumann

That's where the marchers went from.


Brown

And you went to?



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Heumann

I'm looking at the article.


Brown

I mean, did you go right to the vigil?


Heumann

I don't remember the timing. The vigil was in the evening, so we would have done the march, gone to the Hill, and then gone to the vigil.


Brown

The vigil, you're saying, was the one that was organized with other groups and was quite large?


Heumann

Right, right. That's the one that United Cerebral Palsy--see, they are listed here, too. [Reading]: "The group, comprised mainly of persons attending the annual meetings here of the President's Committee and United Cerebral Palsy--" I don't know that United Cerebral Palsy had their annual meeting at that time. I don't remember.



[Tape 14, Side B]
Heumann

I believe what these articles show--you know, the demonstrations against Nixon headquarters in '72 and the articles of May '73, with the protests at the Hilton during the President's Committee meeting, and the vigil at the Lincoln Memorial, and subsequent march from the Lincoln Memorial to the Capitol--we were getting better coverage. We were not on the front section of the Post; it was C-2, so that must have been Metro [the metropolitan section], when it wasn't a metro story; it was a national story.


Learning about Center for Independent Living at Berkeley

Heumann

But we also were coming into our own. The articles weren't exactly right because DIA organized it, though, as I say, we weren't the only organizers. It was our way of beginning to work more on the national level. It was the Lincoln Memorial vigil which was the first time that I met any people from CIL [Center for Independent Living] and Berkeley. Larry Biscamp and Dick Santos were there. That was the first time I ever heard of CIL.


Brown

You met them and they said they worked for CIL in Berkeley, and you said, "What's that?"


Heumann

Oh, yes. No one knew what it was.


Brown

Did it sound impressive? Interesting? Just was another program?


Heumann

It sounded interesting.


Brown

Different?


Heumann

It was different because it was doing political activism linked with services, which we hadn't done.


Brown

Had anybody been doing that, that you know of?



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Heumann

No, no. Except for programs like U of I [University of Illinois at Champaign-Urbana], University of Missouri at Columbia, where they did have some services, but the U of I's was very sports-oriented. They didn't have real support services as I knew it, from what I heard from friends. It was more you had to kind of do it on your own. What they were talking about--Larry and Dick were talking about--was interesting. But none of us had ever heard about it, and God knows when we would have ever heard about CIL again had Ed [Edward V. Roberts] not called for me to get involved because they were not at all seen as national players, no.


Multiple group sponsorship

Brown

Do you want to talk any more about your personal experience of any of these events? I'd be very interested in hearing how the vigil went for you. What you thought about it, what happened.


Heumann

I think all these events to me were very powerful events. They were fun events because there were a lot of us together. We got to talk to each other and meet new people. We got to see how our organizing really could pay off because people did come. We got to talk to some media, which always was important. I think we always kind of joked about how much work we had to do to get such few people, and that was something that we thought a lot about. See, we always were under-counted, but still, I really thought we had about five hundred people between the vigil and the march, but I don't know. Nancy would remember, probably better. As I said, I think Denise knows where to reach her.


Brown

Do you remember the structure of the vigil? What happened? What your role in it was?


Heumann

We had singing. I was one of the organizers of it.


Brown

Were people giving little political speeches?


Heumann

Yes, there were speeches that were given. We stayed out all night. People slept outside. I had to get permits and there was all that stuff, because you had to do that. I think Eunice's office and Nancy and others--I mean, there was a good group of people that had organized this. That's why Durwood McDaniel, who was with the American Council of the Blind--in this article--because Eunice was very active with them. There were mainly people in wheelchairs at the demonstrations, but there were lots of other people, too, which was the first time that, to our knowledge, that that had happened. There were some deaf people, and there were blind people and physically disabled people and civilians and veterans and some parents. It was a broader cross-section of people than had existed before. So we were [sound of screeching brakes outside, then a honking horn]--Oh, God. That's Connecticut Avenue.

We were beginning to see that the message had an interest, and members of the Hill were interested. I believe we did do some lobbying. This other article that I read--was that around this one, or the other one? Yes. Was this around--what's the date of that?


Brown

I think this is in April of '73.



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Heumann

Okay.


Brown

It sounds like you made a special trip at some point.


Heumann

To go down there.


Brown

To visit Congress in '73, in April.


Heumann

Yes. At any rate, we didn't like Nixon. He was a great target. We were slowly getting the message out and slowly having an impact on some of the traditional organizations. I mean, UCP putting time and money into organizing this vigil, was pretty momentous. They definitely were not involved in the walk-out. No doubt about that. But they did give time and money and personnel. I do believe they paid Denise to work on this, and I do believe that Nancy from UCP, who wasn't disabled--I think she ran a youth program--and she was very involved in this. They gave a lot of her time to this. She was out of the New York office. So I think that was all very important.

Anything else?


Brown

Well, I was just wondering what your experience was at any of these events. It's interesting to hear the anecdotes that pop out. Did anybody catch on fire?


Heumann

No, no.


Cross-disability component

Brown

But you said that the vigil was the first one you could remember having a real strong cross-disability component?


Heumann

Well, yes, because that was the first demonstration that was organized to do that. I think both PRIDE and DIA in New York were more cross-disability than most other groups, and because we were working with this group around Willowbrook, we had parents involved that hadn't been involved before. There weren't really individuals who themselves had cognitive disabilities who were very involved, but there were some. DIA was primarily an organization of physically disabled people. But even on that it was cross because usually it was the UCP group and the muscular dystrophy group and the March of Dimes group. So even though people looked like they had similar disabilities, it was the beginning of a cross-disability because we had different types of disabilities. That, in and of itself, was different still, at that time.

But anecdotes. I mean, I just remember that it was a real high, being at the Memorial, being in the marches, meeting with people, seeing people there. That it was a good feeling for us to be talking proactively about not just the problems but what we wanted. It was a time that we began to meet with some of the staff on the Hill who, of course, were working on these things, and we weren't really working on it. It was the paid lobbyists that were working on this stuff. We weren't very involved in it. But I think we also helped


203
what was going on with the Rehab Act. We didn't really get involved in IDEA [Individuals with Disabilities Education Act]. We didn't really know about it.

Of course, one of the reasons why we were very much in support of the '72 act was because of the civil rights provisions. It wasn't just the independent living provisions. It was Title V. That was a very big deal for us because we really saw that as a critical part of the legislation, to help deal with discrimination issues. Yes, I'm sure the fact that the Lincoln Memorial was a federal building meant that this would have an impact on it. So there was a lot of symbolism going on, a lot of first times for people to be at a national demonstration. For some, it was the first time they had ever been in a demonstration.

The thirty people who walked out on Julie Nixon--that was a big deal. You don't demonstrate against the President's daughter. So it was all these things that were happening, that we were trying and doing, and the world didn't fall apart, and we made a point. I think we felt good about what we were doing. As I said, there were some who thought what we were doing was terrible, and others who were very happy that we were doing it. Some who joined us, and some who were afraid to join us and kind of looked on the sideline.

But that was really, I think, in those periods of time that we began to push an agenda that said, "Where are the disabled people? Why are these organizations not hiring disabled people, using disabled people in positions of responsibility?" It was from those activities that I actually got my job working in D.C.


Brown

The internship?


Heumann

Well, it wasn't really an internship. It was a full-time, paid position. I wasn't considered an intern. I went there to do a residency.


Brown

That's what I meant, residency.


Heumann

Right. But it wasn't a special job. In other words, they had a job opening for an L.A., legislative assistant. They had, like, 130-some applicants, and I got the job, so I did it for my university requirement, but I was a regular employee, paid a regular salary.


Brown

That's what I meant by intern. That's all I meant, was that you were getting school credit for it.


Heumann

Right.


Background on President's Committee

Brown

I have some questions I just wanted to go back to or ask. Was the President's Committee at this point, when you were attending, was it primarily nondisabled people that were involved? Or just they were all more conservative or traditional people?



204
Heumann

It was and is still primarily nondisabled people, although there were numbers of disabled people who went there. The President's Committee started in '47 or '49, as a result of the Second World War. They had affiliates in many states. The affiliates were Governor's Committees. The Governor's Committees had disabled people on them. So that's where some of the disabled people came from. They were either executive directors of the Governor's Committees or they were on the Governor's Committees. There were some disabled people that were on the President's Committee, advisory committee, but I don't think that many, really. People from D.C. came, from different organizations, but it was primarily nondisabled people from business and provider organizations.


The "militant" label

Brown

Then I wanted to go back to the issue of "militant" because I did see it in a number of the articles that I read. Was that another way that people were trying to minimize what it was that you were doing? I mean, what was the issue?


Heumann

If the word "militant" turns you off, it did; if the word "militant" didn't--you know what I mean? It just depended on what the reader thought about the word "militant." "Militant" was, I assume, because we were very vocal in our opposition, and we weren't traditional in our opposition. We were vocal about it, we had posters about it, we gave out fliers about it, we broke up meetings about it, we demonstrated about it. Really, remember the time. It was during the Vietnam War, and there were a lot of activities going on. They were not as militant as some of the other activities, but for the way people had thought about disabled people, they were very militant.

They were. We were doing the most kind of aggressive activities. There was nobody else doing what we were doing at that time. They were much more like things are now.


Brown

In one of the articles, I remember specifically it was an interview situation, and someone brought up the word "militant," and your answer seemed a little bit defensive, and I was wondering if that was just because--


Heumann

What was the answer?


Brown

I think you were saying basically these issues are really, really important, and we see ourselves more as being assertive and saying, "This really has to change."


Heumann

Right.


Brown

I thought that was a fine answer, but there were elements of defensiveness, and I was wondering if that just came from feeling that that was an attempt to dismiss, based on using that term.


Heumann

I don't know that it would have been defensive. I don't know that I would have felt defensive about it. Rather, it would have been an explanation, why are you? My response probably would have been using the word "militant," whoever was using it was trying to discredit what we were doing, so it was to try to say, "Don't discredit what we're doing


205
because we're not following the kind of mentality of being thankful for whatever we were getting."

Because that's what this was all about, was really saying that we weren't thankful for what we weren't getting. We wanted people to have a better understanding that we were doing these things in the way we were doing them because in the traditional way, nobody had listened to us. So it really was a way of getting people's attention, was one of the reasons why we were doing these things. You know, you tried to get a meeting, you tried to have a regular discussion, and nothing seemed to change. This was a way of at least getting some people to look at these issues in a way that they weren't willing to look at before. That was, for some people, militant, communist, whatever they wanted to call it.


Using demonstrations as a message medium

Heumann

We definitely talked about DIA and what was going on as a civil rights movement. We did not use terms like independent living because that just was something that came out of CIL. We didn't know about CIL. I think the term "independent living movement" was not used really in '72, '73. I think it was more '74, '75, '76, '77 that those words began to be more popular. But we definitely talked about the charitable model versus the civil rights. I don't think we used the word "model." It was more like charity versus civil rights, human rights, civil rights. I think we probably used those phrases, from charity to civil rights, more.

I think also, for me, the DIA days--there were apparently demonstrations that took place in the thirties, and there were other activities that had gone on earlier, like the formation of the National Association of the Deaf, and guilds as early as the 1500s that I read about--but at that age and without any historians really involved with us, it felt very much like we were creating something new, which I do believe is true. It was something new. But the demonstrations that went on in the thirties were also probably something new for the time.

I think what's important about what's going on now is that there is more of a documentation of what's happening and hopefully that we can talk and reflect about the history so that every time we do something it doesn't feel new. The model that we started--well, the model that we used, I don't want to say started--the model that we used in DIA was later on something I learned about that was going on in California with CIL. Although they were using the courts more than we were, because they were aligned with more of the civil rights groups.

There were definitely court actions that were going on in New York and the area that we were involved with directly, like my education case--also the Willowbrook case--Joe Mandela and the guys from EPVA were probably involved in some litigation dealing with accessibility-related issues. But DIA as a rule, to the best of my recollection, was not named during the three years that I was there in any litigation, although it certainly has been since then--numbers of pieces of litigation.


206

I think in the seventies when I went out to CIL--and I know we're not discussing CIL now--but, again, we used demonstrations as a mechanism for getting a message out and organizing, community organizing. Then when ADAPT [American Disabled for Accessible Public Transit; American Disabled for Attendant Programs Today] came out in the eighties--I think that came about in the early eighties--they also were building on that model and I think were more aggressive in what they were doing, which was appropriate, and is appropriate.


Brown

You said "and is appropriate," right?


Heumann

Yes. That model is one that hasn't been abandoned; it has just been built on. In many ways, the disability community has been continuing to use that model, I think, in a more aggressive way than at least you read about for other groups, others have big marches, with thousands and thousands of people. We never have been able yet to get to the thousands and thousands of people march, so maybe the way to get attention when you've only got a couple of hundred people is to have to be more aggressive in your approach. I don't know, but anyway, I think it's a very effective tool and one that does sometimes get some attention.


UN Plaza Rally

Brown

I was wondering if you wanted to talk at all, to say anything else about the UN Plaza rally or protest that you had. I think there were actually two different protests that you had.


Heumann

What were they about? I remember one because I remember--well, I think--who knows what I remember.


Brown

[going through papers] This was just a demand for equal rights. It was part of the national civil rights groups for the disabled. This was in 1972, Monday, May 8th. This article was from the Daily News.


Heumann

Let me see it.


Brown

That was the one that Eleanor Holmes Norton and all of them were at.


Heumann

[silently reading the article] I remember going to this. I remember that--what's the date?


Brown

May 8 of '72.


Heumann

And when was the demonstrations at the President's Committee?


Brown

That was--


Heumann

In '72.


Brown

I didn't have any articles about '72. I wasn't even sure that you went to the President's Committee in '72 because I didn't have anything written down.



207
Heumann

But, see, I think if you look in '73, I believe that this demonstration came about--it was organized--I mean, it wasn't one that just happened. But we did bring people from the President's Committee up because I do remember Charlie somebody or other, who came from New Mexico [whispers something inaudible]--


Brown

[chuckling]


Heumann

--and came up to New York. I remember a group of us sleeping in my mother's living room before we went to the rally. I'm trying to remember who organized it. We were involved. I don't know. Maybe the newsletter would--but clearly, it was a more organized one because all these people spoke.


Brown

Politicians.


Heumann

Right. Again, looking at the picture, it was one of our large but not overwhelming demonstrations. I do remember it, though. I remember it happening, and I remember--that's Jimmy there. I have to look at the newsletter and talk to somebody.


Brown

Okay, that's fine.


Demonstrations as communication

Heumann

But, again, it was in that time also a mode of communication. Demonstrations were not uncommon. I think Adrienne Asch--I don't remember if she was on the Human Rights Commission that filed a complaint. I don't remember. But she was involved with some stuff around that.


Brown

All right. Well, two other things. What role did your experiences with DIA have on your approach to the world of activism later on?


Heumann

It definitely is something that I think I continued to use. As I said earlier, it was a combination of trying to be analytical about what the problem was, what the solution was. We weren't as locked into the legislative mode as we are now, although we did work on bills in the city and at the state level. Then did work progressively--as the years went by--we worked more on federal legislation so that demonstrations against the Nixon vetoing, while we weren't very involved in the writing of it, we were involved with at least making statements about the importance of it.

So I think it's something that to this day is very important. You need a comprehensive approach, and I think it is important to have people who are willing--I don't know why demonstrations in and of themselves sometimes make people very nervous. From my perspective, maybe it's because I believe in them and have done so many of them that I just see them as part of a continuum.

I don't think it's a good idea in demonstrations to be violent or unduly disruptive. Some things that I hear about sometimes, I don't necessarily think is the best way of doing things. But I think civil disobedience is important. I think there also is an issue of


208
personal commitment. If someone is involved in a demonstration and the demonstration leads more to the possibility of people being arrested, I think there is something--if it's not being done in a cavalier way and a stupid way--that's important because you're making a political statement. It's a personal statement, even before it's a political statement, that you're willing to risk in order to fight for something you believe in.

Do I believe that that's what people should do the first thing is go out and block traffic? No. But do I believe that it's an important part of what goes on? Yes.


Final thoughts on DIA

Brown

My last question is, given that hindsight is often 20:20 vision, is there anything that you would do differently or that you wished DIA had done differently regarding those years and the activism that you did?


Heumann

No, I don't think about it. There are other things that I've done that I think about that way, but we didn't really know a lot. If everything was as it was, could we have done things much differently? No, I don't really think so. We were a new group of people that didn't know each other, that were coming together, that didn't have a lot of community organizing background. We weren't, as I said, a part of, as a rule, other political organizations, where we could have learned things. I think we worked full-time, dealing with our disabilities, and dealing with this organization, so I think, given everything, we did kind of a phenomenal job.

Really, we were kind of out there. It was like looking and learning from what other people seemed to be doing, and expanding on it from our perspective of disability. I think our intent was to educate people, the general populous, and to educate disabled people and to educate policy makers and legislators. I think, given the size of who we were, there was a lot of smoke and mirrors going on. But people really believed it, and so we definitely put the smoke in the mirror, as many mirrors and as much smoke as we could. I mean, considering everything, we did a pretty good job.

When I left and I came to California because I was in graduate school, I didn't have a lot of contact with the organization anymore. It was kind of an abrupt, almost, ending. Of course, I was still friends with people like Bobbi Linn and Denise McQuade and Pat Figueroa and Pat Ford. But numbers of people then started moving on and out to other organizations, so the new leadership I didn't really know. I mean, I know some of them now because they invited us back, which I think was to the credit of the people that were and are still working on DIA, that they see it from a historical perspective, and people felt it was important who the founders were.

I think that was good, but I don't think--I could look at things at CIL and say, Well, too bad we didn't do things this way or that way, but I think then I didn't know a lot of other options. We didn't know a lot of other options.


Brown

Anything else you want to say about DIA before we close?



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Heumann

I just think it was a very important organization, not just for us but for others. I also think that it gave a lot of us opportunities to learn and then to move into more structured organizations. Yes.


Brown

Okay.

[tape interruption]


Brown

Do you want to say a little bit about what your duties were as president?


Heumann

It was a very significantly women-oriented organization, we tended to do everything in groups. I guess I would chair meetings. My job was to be one of the leaders of the organization, to try to make sure that things were getting done in a timely way. But people like Denise Figueroa and our mothers--my mother, Denise's mother, Frieda Tankus, Jimmy, Larry--all these people--there wouldn't have been a DIA without all these people.

I think that I was one of the people who felt comfortable as a spokesperson, so I, in this capacity, would more often than not be seen as the person to send people to at rallies and demonstrations, to make statements. I'd be a person who would make statements at rallies.


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Judy Heumann, circa 1980 Photo by Betty Medsger

Judy Heumann, circa 1980 Photo by Betty Medsger

Ed Roberts, Joan Leon, and Judy Heumann, founders of the World Institute on Disability, 1984 Photo by Andrew Ritchie

Bill Clinton and Judy Heumann, December 1998



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X. A Summer of International Travel and a Year as a Graduate Student in Public Health, 1973-1974

Travel in Europe for Rehabilitation International


[Interview 10: March 13, 1999] [Tape 15, Side A]
Brown

In the summer of 1973 you traveled in Europe as a consultant for the International Society for the Rehabilitation of the Disabled. If you could tell me just a little bit more about the organization, where they're based, and what they do.


Heumann

It's now called Rehabilitation International. It's based in New York City, Manhattan. You've been there. They're an international organization. They have chapters all over the world. They had been a mainly nondisabled organization, and in the seventies, as the disability movement was getting stronger, they began to look at ways that they could get more influence by disabled younger people.

I had met Norman Acton and Barbara Duncan, I guess it was in 1972 or so. There was this youth program being held in Finland. You had to be twenty-five or younger, and I was just twenty-five. I guess I was twenty-five and a half. They asked me if I would be interested in going, and I went with another friend of mine, Jan Balter.


Brown

When was this?


Heumann

Seventy-three. We were away for six weeks. We were in Norway, Sweden, Scotland, and England.


Brown

You already knew about them before you were a consultant for them.


Heumann

Right, yes, I had met them before.


Brown

So they basically asked, "Do you want to go to Europe?" So what was the purpose of your trip? I mean, were you working for them? Were you getting paid?


Heumann

I didn't get a salary, but they paid for the trip.



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Brown

They paid for your expenses. Did you take an attendant with you?


Heumann

Jan Balter.


Brown

Oh, she was your attendant.


Heumann

She was disabled also.


Brown

So they paid both of you.


Heumann

I think so, yes.


Brown

What was the purpose of the trip?


Heumann

It was basically to--and I really remember the Norwegian part, the Swedish [sic; Scotland] part, and the English part. I don't remember that much about the Swedish--I guess because I've been in Sweden so many times and I've only been to Scotland and Norway once, so I remember that more. The English trip was bizarre.

The Norway trip, which was the primary reason to go, was that there was an International Red Cross youth camp in Norway, so Jan and I were the two U.S. representatives. There were people there from Africa, Europe, Scandinavia. There was a woman there from Spain and a guy there from Denmark. That's where I met Kalle Konkkola.


Brown

I was going to ask that. I'll cross that question off.


Heumann

Yes. I think we were there for about ten days.


Brown

At the camp.


Heumann

Yes.


Brown

You said you were gone for six weeks. So ten days was in Norway, and the rest of it was going to these other countries.


Heumann

Right. I think we were away six weeks. In Scotland we went to a youth program also. In Sweden we were just doing more visiting programs, as I recall. In England we were visiting programs.


Brown

So they were basically paying for you to go. What was their angle on it? Just to have more input from a disabled person?


Heumann

Yes, and they wanted that representation at the meetings.


Brown

So you were representing them?


Heumann

Right, at the camp programs.


Brown

Did they do all the organization in terms of where you would go and where you would stay? Who did all the logistics? You didn't, obviously.



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Heumann

No. I'm sure that I was involved in helping with it, but two of the programs you went to a place, and then they took care of everything.


Brown

The camp.


Heumann

Right. I think that the affiliates helped, their affiliates help, and they probably did the ticket bookings. But why don't you ask the questions.


Brown

Okay. I wanted to know where exactly you went, how long you stayed, if you can remember. A little of that you've already touched on. Then what you did, if you can kind of go place to place, as much as you can remember.


Visit to Norway

Heumann

Yes, sure. Twenty-five years ago. The Norwegian trip was very interesting because it was really an international meeting. The Scottish program that we went to was mainly Scottish people and Jan and I. The only activity that I recall that we participated in which had people from around the world was the program in Norway. I remember in Norway we did some sightseeing. I remember we went to the Statue Gardens. That was very pretty. But the camp program itself, there was a camp, but there was a focus on learning from each other, opportunities to be together, to talk with each other, to learn from each other. Kalle and I became very good friends at that point. There was a woman named Mercedes from Spain, and a guy, Theo, who was blind, from Denmark, I believe. I don't remember who else was there. We spent a lot of time together. There were discussion groups and just general activities of boating and outdoor activities, you know, just camp.


Brown

Was it focused on disability?


Heumann

Yes, it focused on disability. About half to two-thirds had different disabilities. It was people from around the world. It wasn't that big a program. I probably want to say fifty people. We had discussion groups.


Brown

Do you remember what you discussed, the topics?


Heumann

The topics? Not specifically, but generally. I'm doing your interview in twenty-five years. "Do you remember where you went on the second?"


Brown

[chuckling]


Heumann

It really was learning about what was going on in people's countries and sharing information and general discussions about people's perceptions. Again, we weren't talking about movements per se because that language wasn't really used that much then. But they really did focus on the environment: what problems were, what governments were and weren't doing, what we were interested in achieving, what we saw as barriers to that, successes. It was good because it was a good atmosphere. It was very pretty. I don't remember the name of that. I want to say it started with a "T" or an "L." I'd like to see a map.


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I remember one funny incident. We were having dinner, and I was eating this meat, and I thought it was beef, but it was a little soft for beef. I asked what it was, and it was whale. One of those international experiences where you're sorry you asked but you have to keep eating? Then I remember they didn't like the Swedes.


Brown

Who didn't like them?


Heumann

The Norwegians. Because of the war. I thought they were joking. I was saying we were going on to Sweden after this, and they were, like, negative. But I figured these countries aren't very big at that point. How could people not like each other? They were definitely not fans of the Swedes. They considered them profiteers because they had made money off of the war. They hadn't gotten involved, but they had sold arms. They were supposedly neutral, but--. The Norwegians, of course, had been in the war and were affected by the war, so there was hostility. I don't want to exaggerate it, but I remember.


Need for civil rights and benefits

Heumann

But for me it was a good atmosphere. We were talking to people from different communities, all of whom were doing some work in their community on disability issues. Kalle, of course, because at that point--let's see. Did I go to Berkeley right after that? Yes, I did. I went right after that. But I didn't really know what CIL was. I mean, I had a quick vision of it. So it was very interesting to me that the program that Kalle had set up, was setting up, was very similar and basically the same as the CIL program.


Brown

Was that Threshold [an independent living center--the first in Finland]?


Heumann

Right. Other questions?


Brown

I was just wondering if there was anything else you wanted to say about that, that you can remember.


Heumann

About Norway?


Brown

Were you surprised by anything that you learned about the disabled people in other countries?


Heumann

No, because I had been in Germany and Sweden and Australia the year before. I don't recall being surprised. There was this general, common problem that everybody was facing. Again, it was a reinforcing for me of learning about what the Scandinavian countries and European countries were doing, but I wasn't any longer surprised, really, because I already had a broader understanding of what we were doing and what others were doing, so it was just continuing to add on to what I knew.

But it reinforced the same types of discrimination. At that point, I think Kalle was also involved in civil disobedience. The others weren't, really, as I recall. But we certainly had been because I was still involved with DIA at that point.


215

I remember being on a boat. It was a nice boat. I remember staying up for hours and hours, talking. You know, just long conversations. I think it continued to reinforce an understanding of the bigness of the world. The person who was there from Africa was from Botswana. She was a white nondisabled woman. She was from Botswana and had lived there, I think, her whole life, but she wasn't black. I'm trying to remember [pausing]. What I have thought a lot about--not in the last few years--when I was at CIL and what I liked about that place and I thought would be good was it was a year-round camp. The Norwegians used it to bring people together to spend a week or more and discuss issues. I always thought I'd love to be able to have a place like that in the United States, where we could bring disabled people together or disabled people and nondisabled people together, just in a loose but structured environment, to really have opportunities to talk to each other and learn from each other and share information together.

Those kinds of environments are very important for people, just to get a better understanding of who each other is and what makes you tick and what your goals and aspirations are, especially because it was a similar kind of group of people. But definitely I left there once again feeling--that was true for the whole trip--like at that point already the civil rights approach to what was going on in the United States was beneficial. It was at that point, really, in '72, '73 that I really did start saying that I thought that we need a combination of systems. Because I saw value in each, and that independently it didn't seem that we could get where we wanted to go.


Brown

With just?


Heumann

Just the U.S. type of model, or the European or Scandinavian.


Brown

Civil rights or just benefits.


Heumann

Right, that it needed a combination of both. Certainly, the whole empowerment aspect of what people were involved in was central. But you needed an ability to have something in place, particularly for individuals who had more significant disabilities--could be covering costs that were beyond what the typical person had to pay for things.


Visit to Sweden

Heumann

Then we went to Sweden. I wrote to the people that I met in Norway for a number of years, I think, including the woman that Kalle came with, whose name I can't remember, but the attendant that he had. She was very nice. I don't know if I saw her again when I went to visit Kalle years later. But it left a good impression on me.

Sweden, when I was there, I was visiting programs, and it was similar to what I had done the first year, but it was learning more about their housing systems and more about their benefit programs. I think we stayed in a hotel, did a little bit of sightseeing.



216

Fokus housing in Sweden

Brown

So you were going to housing programs? What sort of programs?


Heumann

Well, they had--I think I did mention it to you before. What's it called?


Brown

The Fokus houses?


Heumann

Fokus housing. Other types of supported living model programs that they had. I think I met with a social worker, and I met with some disabled people while I was there. I think I visited some of their organizations. They did have more disability involvement in some of their traditional organizations.


Brown

More than in the U.S.?


Heumann

Yes.


Brown

Or more than the other countries, like Norway?


Heumann

I have no idea about Norway. More than here. They got support from the state to run those organizations. I remember laughing all the time because we had so much difficulty getting money to do anything, and you never really saw the government easily giving out money to people to advocate for things. So Sweden just kept reinforcing things that we didn't have. I know that there has been a lot of criticism later on in the years about Fokus.

For its time, in comparison to what we had here, there was nothing because they had a certain number of units in a building. Everybody was not on one floor. They were on one area of the building, but they weren't segregated off. They had two apartments on each floor. Then there was a room downstairs where they had the personal assistants. They would call, and people would come up, and they would schedule when they needed their help, and they were involved in the hiring and scheduling.

But, of course, the problem with the program was that because you didn't have your own person, even though you had a lot more latitude than if you had nobody, it still didn't give you the latitude that you could have if it was a program where you could hire based on your interests, your needs, and when you needed somebody.


Brown

Was that a problem that you saw when you were there, or that was something that occurred to you later? I mean, did the residents themselves point that out as a problem?


Heumann

No. Remember, this was a regular apartment complex. They were just tenants in a building. No one saw it as anything different because the Swedes were very into percentages. They were closing down their institutions. They had--and still have, I think, I'm sure, rather--benefit programs that provide a much broader array of support than we do here. I don't remember the disabled people that I met there, but I think I met some people from the sports clubs that they had there.


Brown

You didn't meet Adolf Ratzka?



217
Heumann

Adolf wasn't there then. I don't think so. I didn't meet Adolf until the eighties. I don't think I met him then. I think he maybe was just going there, from L.A. [Los Angeles] or Berkeley, but I don't think so. I should ask him, but I think the first time I met Adolf was in St. Louis. I think so. Shall we call and ask? Too late.


Brown

Anything else that you can remember about that particular Sweden trip? I know you went there a lot, so they all might kind of run together.


Tech center's new program

Heumann

No. Again, I think it was visiting different kinds of programs, different associations, getting a better sense of what was going on there. I did realize at that point, too, that although they had many different programs, they had a very high unemployment rate. I think I visited one of their tech centers, which I was very impressed with because you could go to one place and look at all different kinds of medical equipment, and you could take things home and try it out. Nobody was there selling anything. Manufacturers didn't give for display; the government purchased. What that meant was that you weren't getting any hard selling for anything. It was like they would have five different types of picker-uppers. They were doing work on bathrooms and kitchens and all types of other things. That very much struck me, also, that they were--from what I knew here--they were doing a lot more in trying to get things into the hands of people. We still don't have these tech centers at all.

I want to say they had eighty-some in Sweden, in your communities. You could drive and visit them. They had OTs [occupational therapists] on staff who could help you look at what you needed or thought you might need, and then the government would pretty much pay for it if you needed it. That was foreign.

I remember Jan and I going outside, down the street at the hotel we were at.


Experiences in Scotland

Heumann

Then we went to Scotland. In Scotland, gosh, I want to say that was more fifty-fifty disabled and nondisabled people.


Brown

In terms of who you were meeting with?


Heumann

There was a program.


Brown

Oh, this was the other camp.


Heumann

You know, I remember in Scotland we stayed at, like, a bed and breakfast. You had to put money to get heat. I remember being shocked by that. It was cold there, and it was the summer. I remember--oh, goodness--so cold for the summer. What I remember about that


218
the most is that we were taking an improv class, and somebody had a seizure, and nobody knew how to take care of it, how to help the person while they were having the seizure. I was telling them verbally what to do and worried that I wasn't doing the right thing because, of course, I really didn't know what to do if somebody had epilepsy, when they were having a seizure. I think I had heard something, so I was saying, "Turn them over and put something in the person's mouth and move stuff away." It turned out later that it wasn't a real seizure. The teacher had just wanted to do it for the acting class.


Brown

Wow.


Heumann

I remember being very upset, although it was a great exercise because no one knew that it wasn't real.


Brown

It was a student, but the teacher had set it up with the student?


Heumann

Right.


Brown

Wow. Was it mostly disabled people or this was the group--


Heumann

This was a mixed group. I remember thinking, Oh, my God. I was so worried about something bad happening to this person. But it was really to demonstrate, I guess, being able to work together. So, from that perspective, it was a good exercise. Did a good job. But I remember thinking, Oh, my goodness. Because I was so worried that something wasn't right.


Brown

So you kind of took charge.


Heumann

Exactly. I did.


Brown

But weren't really sure you were doing the right thing?


Heumann

I mean, it's not that I just jumped in. The guy started having a seizure. Nobody did anything. So it was, like, somebody had to do something, but I couldn't do it myself, so I had to--


Brown

Direct.


Heumann

--direct people on what to do.

Would you cross my foot, please?


Brown

I'm just thinking that might just be a metaphor for many parts of your life.


Heumann

Right. But I do remember that.



219

Bad durable medical equipment

Heumann

Now, this was interesting because the quality of what people got in Sweden and Norway--Sweden in particular, because I didn't really visit systems in Norway, so I couldn't really speak to what they did or didn't get, from a DME [durable medical equipment] perspective--but in Norway they have very similar types of services to Sweden and Finland. The Scandinavians--their systems are different--I mean, Finland is different; they're each different. But there's more of a thread.

But I remember when I was in Scotland, somebody was sitting in a wheelchair, a decrepit wheelchair, like if I were to have thought of it, I would have thought of the Poles when I saw them at the wheelchair games in Germany, whether they really used those chairs in Poland or not. The manufacturers and everybody felt so badly for their equipment, they gave them new wheelchairs.

One day, this person was sitting in the wheelchair. It had cloth seating and cloth back. The chair just collapsed. I remember laughing and thinking, What a piece of garbage. You would hear people in Britain talk about, Yes, they got stuff, but what they got was really poor quality. It really wasn't meant to help you and get you around. I mean, I remember I had a wheelchair in the States around that time, a manual chair, and it had broken. The wheelchair company had told me that I had gone up and down too many curb cuts.


Brown

Curb cuts?


Heumann

I mean, up and down too many curbs. That the chair wasn't an outdoor chair. I'm like, get a life. It was a regular EJ [Everest & Jennings] chair, but their equipment was really bad.

I think it was in Scotland that someone donated time in a small airplane to take all the students up? I think that's where it was. I sat in the car the whole time because I was not--



[Tape 15, Side B]
Heumann

I was not at all interested in going up in this small plane, so I sat the entire time, reading a book in this car.


Brown

But the whole rest of the group went up in the plane?


Heumann

Everybody.


Brown

But you.


Heumann

It was one or two people at a time. It's a little plane.


Brown

Didn't want to go.


Heumann

No. Had no interest. I remember my friend Tony had said little planes are fun and safer and dah-dah-dah-dah. Not me.



220
Brown

Do you remember anything specific about the group in Scotland, or you did things differently from the group activities that you did in Norway? I mean, I'm assuming, because it was a mixed disabled-nondisabled group, that it would have had different dynamics and different topics.


Heumann

Yes. I don't remember how long I was there. I had been there less than six weeks? Scotland's a pretty country. I don't remember any of the people I met.


Horrible experience in England

Heumann

Now, England--that was an experience. What was the name of the town we stayed in? We stayed in a little town. First of all, the trip was organized by a woman I later found out hated Americans. Her sister had married an American soldier who had taken her back to the United States, and she hated the United States. Of course, no one realized that when she was setting up my itinerary.

We stayed in this little community, where they had a longterm rehab unit. The warden, which was what they called them, was on vacation. I had flipped that place up in the air by the time that warden got back. They had staff wearing white coats, they had restricted hours. I remember Jan and I talking--


Brown

This is where you were staying?


Heumann

Right. This is where they put us up--not in a hotel, not in London, but in this place outside of London, where they didn't allow you, in a wheelchair, to go to the movies by yourself. She never had anything planned in the evenings for us, so we'd have to go back to this place at night, and we didn't know anybody. We didn't have a car. Jan didn't drive. It was--


Brown

Rolled eyes [describing H.'s expression].


Heumann

But I visited numbers of programs. I did go into London, but no sightseeing. The whole time we were there, she had no sightseeing for us. I mean zip. We visited a place called Loughshire, an ergonomics program. A man named Terry and his wife, who I had met in Australia. They were very nice people. They went to visit the program so they could show us what they were doing. They were testing equipment to see not just about the stability of the equipment but also to be able to look at things like people have different types of disabilities. How could the various forms of technology--vacuum cleaners, whatever--be utilized by disabled people, and which types of disabled people could use which types of things more readily? Vacuum cleaners for a one-armed person or different types of--

Let me talk about Loughborough, and then talk about the train ride we took.


Brown

Did you say Loughborough? Or Loughshire? Are those two different things?


Heumann

Loughborough.


Brown

Okay, so talk about Loughborough.



221
Heumann

I think we had a barbecue. We sat outside. We were talking. We got into talking about the different--how did this go? They had all these clubs, like the disabled horseback riding club and the disabled this and the disabled that. I think while I was there I did actually visit one of these horse riding--I did. We've got them here, too. They look very nice. I don't remember if it was the person who came to pick me up or somebody came to pick somebody else up, but I went over to the driver of this vehicle and said, "Do you have any clubs for disabled people and sex?" I remember Terry and his wife laughing. I said, "You've got horseback riding clubs, disabled swimming, dah-dah-dah-dah. So I just was wondering if you have a club for disabled people and sex." Terry and his wife were, like, funny people, so they just laughed because it was me. But the guy who was picking this person up just was dumbfounded.


Ride in guard's van

Heumann

We went on a train one day to go visit some programs. We had to sit in a place called the guard's van. Do you know what the guard's van is?


Brown

[no audible response]


Heumann

We didn't, either. But the guard's van is where they ship the cattle.


Brown

[laughing]


Heumann

Newspapers. It had no insulation for sound or heat. So there are Jan and I, in a cage, literally. Freezing because it was cold, even though it was the summer. We didn't have any cattle with us, thank goodness.


Brown

It would have been warmer.


Heumann

It at least would have been more interesting. Because we couldn't get on the regular part of the train. Then this guy Chris came to pick us up at the end. I had been talking with the people living there, "You need to take more control over your lives. Do you really like living in a place where these people are wearing these stupid white coats? This is your home." Oh, and they had this bus. I mean, it wasn't a van. It was a bus, a bus. It was kind of on the Trailways version. Had a lift on it, and they would take people out on outings. But it was a bus. You have to understand proportionally this was like a town. This bus was bigger than anything they had in the town, and it had--whatever the name of the--Jan died. Jan was murdered in Berkeley. But anyway, Jan Balter. When Chris came to meet us, he had his white coat on. I said, "I am not leaving with you in a white coat. You either go back there and take that stupid white coat off and come back and get me. I am not going with you."


Brown

Was this the driver? Chris was the driver of the bus that came to pick you up?


Heumann

Yes. I'm not sure if he was driving or just came to pick us up. He worked for the facility. Then we went to some program.



222
Brown

Well, did he take it off?


Heumann

Yes, he went back and took it off. I wasn't joking. I'm like, this whole thing is mortifying enough. I mean the stupid guard's van. I can't go to the movies because they won't let a disabled person go by themselves. At this point, we just didn't understand why--because every day we'd ask, "So when are we going to London?" I think in Sweden we had gone to see a museum. We had done some sightseeing in all these other places, but literally the only sightseeing we were doing outside of London was driving from one facility to the other.

I did meet disabled people there, definitely. In one of the programs we visited, I met somebody from Rochester, New York, who had a boyfriend there, not a disabled person. They wanted to come over one night because I was saying we get home at six, seven o'clock at night, and there is nothing to do there. We'd talk to the people there and watch television, but we're near London! So she and her boyfriend came over one night. We were in the cafeteria, but at ten o'clock they wouldn't let us stay there. Everybody who didn't live there had to leave at ten o'clock at night.

I remember going outside. We were crouching--I was in my wheelchair--but they were crouching in between the cars because we were outside talking. The warden was back at this point, and sticks her head out--I think it was a woman--of her house, telling us that we're making too much noise. Which we weren't, of course.


Studies programs and talks with officials

Heumann

So London. I did learn many different things. I learned more about their systems, more about their benefit programs, lots of different organizations that I visited--government, nonprofit--was impressed with what I had seen in Sweden in comparison to what I was seeing there, although they had benefits beyond what we had here. There you could see the differences in countries. The Swedes had better than--


Brown

Everybody.


Heumann

Than everybody.


Brown

You said you met with government people in London? Did you meet with government people anywhere else?


Heumann

Yes.


Brown

What kinds of people were you meeting?


Heumann

I met with government people in Sweden--social workers and--


Brown

They were explaining to you the benefit systems in their countries?



223
Heumann

Exactly. I always wanted to learn more about programs, so I really made a point of doing that. I wish I knew where my books were. I took notes at all these places. I don't know where they are. I wonder if my mother has them.


Brown

Berkeley?


Heumann

You mean, my mother gave them to Berkeley?


Brown

No, I was thinking maybe you would have had them in Berkeley.


Heumann

No. Too bad, because I really did take lots of notes. Anyway, so that, overall, was a very good trip, but England was unimpressive. I could never understand why--and then the one day that they had--the last day we were there, they were supposed to take us sightseeing, and the bus broke.


Brown

Were they going to take a whole bunch of people?


Heumann

No, that's all they had. I don't know if they were taking a bunch of people. I don't remember. All I know is the bus broke, and we didn't go, so I saw nothing of London, nothing outside of visiting meetings. They weren't all government; there were nonprofits also. It was combinations of things.

So that was the trip overall. A good experience for me.

[tape interruption]


Different political structures

Heumann

I mean, the trip allowed me to continue to learn--I think as I've said a number of times--about different political structures. Even such things as different parties in the United States, where there are two parties. You learn about in school different parties, but there's just something different about actually being in other countries and hearing people talk differently about different parties. I think the Greens were--I'm trying to remember. Were the Greens just starting in the seventies, or was that the eighties? I was meeting younger European people, who were free thinkers.

Also the ability to see the differences of benefit programs, being able to put ours in comparison to other programs and to do the comparisons and contrasting. Just to be able to meet people from other countries where I've always been interested in, seeing people with diverse backgrounds.


Brown

Were you always interested in doing international work? Or was this sort of a generic interest in people from other countries?


Heumann

I was young. I was twenty-five. I hadn't really thought about doing work in other countries, but that in part was disability-related, too. I mean, I wouldn't have thought about it because it would have seemed pretty impossible to do. Different weather,


224
different sun, just learning about differences, and seeing how the needs or the desires of disabled people in my age range were very similar--for some. They had kind of the broad range--those who were more political and those who were not. Even on that trip, I really got the extremes. You know, Kalle and myself on one end and the people living in this residential program, which had been a nursing home, which now is supposedly no longer a nursing home. I mean, people had their own rooms, but it was still very much a nursing home because they didn't have control. Although people tried to say they did, they didn't.


Brown

Okay. Did you know much about disabled people in other countries? I mean, obviously, you went to Germany and Australia and was it Sweden before? But was a lot of what you were hearing from Norway and the people from other countries new information to you?


Heumann

Yes. I think at the President's Committee sometimes I would meet some people from other countries. Certainly, my family was all from other countries, so on one level everyone my parents' age, on both sides of the family, hadn't grown up in this country, so you learned about other systems because people talked about their past, although, of course, what they talked about was a lot about prior to the war and what was going on.

It was mainly new. You'd read things in the paper about international activities, but disability was certainly never discussed. That was very new, meeting disabled people from other countries.


Brown

Had you traveled a lot in the U.S. before you were on these trips?


Heumann

No, we never traveled a lot. I mean, in the summers we would go to camp. I went to camp from when I was nine until I was about--oh, probably eighteen.


Brown

Did you drive? How did you get there, driving or by train?


Heumann

Drive.


Fear of flying

Brown

But you didn't take a plane.


Heumann

I didn't take a plane till I was in college.


Brown

Where was that to?


Heumann

Champaign-Urbana. That was the first plane ride I ever took, to visit a woman named Karen Rose at the University of Illinois. Or was it SIU, Southern Illinois University? Anyway, that was the first time I ever flew.


Brown

Do you want to talk about that, that trip, that flight? What was it like?


Heumann

I was a little scared, but I was excited, too, because it was the first time I had ever flown. I think I had to change planes. They helped me. They were very nice.


225

The second flight I took was eventful. I think I went down, actually, to visit the same person, who was now in Alabama. Her husband was in the military. Coming back, the flight was terrible. It was very turbulent. I remember being totally freaked out. I was reading. At one point, I had the book upside down, and people were throwing up. It was amazing. There was a woman, diagonal to me, who was sitting with her feet curled up under her and reading a book, as if she was totally oblivious to this storm and turbulence and, literally, people upchucking. She was a stewardess. Now it's called flight attendant; in those days, stewardess. No big deal to her. I remember that. I was trying to talk to her to kind of figure out [whispering] why is she so calm and everybody is so freaked out? [Resuming normal volume] I did ask her, "What do you do?" "I'm a flight attendant." "Oh, okay."

So these are the first two times that I flew. Of course, then when I went to California, then I started flying.


Brown

A lot.


Heumann

But my parents didn't fly. I don't know when they first flew. They didn't fly to the United States. They took boats. My father probably flew in the military, but he was also on boats.


Brown

Now, I know from traveling with you that you are not always the most calm person about flying. When did that happen, your fear of flying?


Heumann

My fear of flying was more in the beginning. I'm a much better flyer than I was then. Then I was, like, really--


Brown

That's what I would like to hear about. Would you talk about what it was like for you when you first started flying and you were more afraid?


Heumann

You know what? I don't recall in the very beginning being that afraid. I don't know exactly what happened. It could have been that flight. The time that I was arrested on the plane--what was so comical about it was I was reading this book called Fear of Flying. In the beginning of Fear of Flying, it does talk about her fear of flying. I was in that section of the book when this incident happened. I remember thinking, This is too bizarre.


Southern Comfort in a flask

Heumann

My father had gotten me a flask, and I would drink Southern Comfort before I would get on the plane, on the plane. Years later, I would take Valium; then I took Xanax. I stopped taking anything when I started flying with Gaby Brinkman [Hunter]. I thought she's kind of like my goddaughter and it wasn't going to be a good example for me passing out. I drank, but I didn't get drunk at all. That was just to calm me down. But I would take the Valium or the Xanax and I'd fall asleep. She was also afraid of flying. I thought, I can't be falling asleep and I can't let her take what I'm taking. She was supposed to be able to help me if I needed help.


Brown

So what would happen?



226
Heumann

When I flew?


Brown

Yes.


Heumann

Oh, I would grab onto your arm. It would really depend. I could almost cry. Michael Winter--we were once in Hawaii. We were flying, and he said something, teased me, "The plane is going to crash," and I was almost ready to cry. "Michael, stop it! Stop it!" I don't like to think about it because I've been trying to get myself calm around flying, so I actually don't talk about it a lot.


Brown

Well, this is for history, though, so we can briefly address it and then you can go back to a person who's not afraid to fly anymore.


Heumann

Right. That's because I kind of mask it over.


Brown

Blank it out.


Heumann

You know, at some point you make a decision that you're going to fly. If I didn't fly, I didn't get to do what I wanted to do. I've flown so much that after a while, it's just a way of viewing it. I've never been like a friend of mine, Carol Jenkinson, who actually doesn't fly. She's totally freaked out about flying.


Giving up control

Brown

Were you afraid that it would crash?


Heumann

Oh, sure. It's being out of control for me because then you have to depend on other people if anything happened, so it wasn't just that the plane could crash, it was that I had to depend on somebody else. Flight attendants would always make it very clear to me that in the event of an emergency, I would be the last one off the plane if I was lucky.


Brown

If you were lucky, they'd get you out.


Heumann

One flight, this very nice woman comes over, kneels down next to me, and says, "I just want to go through the procedures with you. If there's an emergency, you'll be the last one off the plane, and we'll do our best to get to you." I think it was even in first class this time. I remember a little bit later I said to her, "You know, I have a real fear of flying, and I just want to tell you that coming over and telling me that you may get to me and you may not, is not exactly a great thing to tell somebody who is afraid of flying. Actually, I bring my own person with me, just so I don't have to depend on any of you."

But the truth of the matter is it's like giving up control. I'm not in my own chair; I can't do anything for myself. Now, theoretically, everyone is in the same position. But unless they get significantly injured in the crash, they can try to get up and try to help people, which I would be less than useful. So I think that's all part of it. You get older. I have different reactions to it.



227
Brown

I remember being on a plane with you. They were showing a video about what to do in the event of--


Heumann

An evacuation?


Brown

Then the little slide would inflate, and you should jump straight out with your--


Heumann

Legs.


Brown

Straight out in front of you. I just remember we both cackled hysterically because it was the funniest thing.


Heumann

I'm going to get all broken. What in the world is going to happen to me? I'm going to be, like, "Please, you've got to hold my legs out in front of me, and you've got to do it carefully." American Airlines at one point wanted people to sit on blankets. I think it was for a couple of reasons. Some people said it was because if you couldn't go the bathroom and you had an accident. So people were very against using the blankets, so, of course, I never used the blanket. But I did think that there was a value to the blanket because in the event of an emergency and the plane wasn't completely destroyed, two people could pull you on it, and your legs would be in front of you. But politically incorrect people say that because people hated it. I was the last one that was going to say, "It's okay, I'll use the blanket." I hated American Airlines anyway, so I definitely didn't say that.


Brown

When I fly with you, Jude, I'll get you off the plane.


Heumann

Now I pull bra straps. I don't know what it is. I like to put my hand behind somebody. Don't ask me. I have no idea.


Brown

And grab them and squeeze very, very, very hard.


Heumann

No, I don't squeeze hard anymore. I just grab the bra strap.


Brown

Well, you were still squeezing a year ago [chuckling]. Very hard when we hit turbulence. Very hard.


Heumann

With turbulence, yes, probably.


Brown

Since not all of your attendants need to wear bras and therefore don't--


Heumann

Grab his shirt.


Brown

Just grab whatever they're wearing.


Heumann

That's right.


Brown

And clench it very, very hard.


Heumann

That's exactly right.



228
Brown

Well, I did want to know a little bit more. I also heard a rumor about you traveling with a blanket over your head. Was that a false rumor? You never did that when you were afraid?


Heumann

No, I'm afraid of the dark.

[cross-talk]


International travel issues

Brown

So more on the subject on traveling and flying with a disability. Did you find that it was complicated to travel? Particularly, I'm wondering internationally. Did you have problems with people not wanting to help you or not knowing what to do with you? Not getting into the incident where they arrested you because we'll talk about that later.


Heumann

You know, the international flights in the beginning, I don't remember a lot of difficulty with them. I wasn't locked into U.S. carriers, and I think I might have even taken European flights. Now, the first trip I took to Germany, as I said, I flew with this big group of guys, so there was no problem, any of those trips.

Actually, I remember going to Australia. It was great. We had this really nice guy, who was the steward. He actually picked me up and took me into the bathroom. He was so nice. The trip was great, even though it was a crazy trip because we had to stop in San Francisco and Hawaii because the weather was bad. It was terrible. It took us so long to get there. But this guy was great.

Coming back, which is boring, I don't recall, which doesn't mean there wasn't a problem. I think I traveled with my motorized chairs. Yes, I definitely think I did.



[Tape 16, Side A]
Brown

So it wasn't a problem getting the airlines to bring your chairs?


Heumann

I'm thinking of the international travel. I don't remember. In the States, certainly, it was. But internationally, I don't remember in the beginning. Certainly later on, there were times when it was difficult to get them to bring the chairs up. In the very beginning, I may have just let them put me in a chair and take me down. That's probably what I did.


Brown

To baggage claim?


Heumann

To baggage claim. I remember in the beginning I would go a lot to baggage claim.


Brown

So in the beginning you did let them.


Heumann

In the beginning I would let them take me down to [crinkling sound].


Brown

That's the chocolate chip cookie wrapper being wrinkled. You'd let them take you down to baggage claim and claim your wheelchair there?



229
Heumann

I had less difficulty in those days getting lifted. The older I've gotten, the more cautious I've been about being lifted.


Brown

Because if you were lifted wrong, it wouldn't have affected you as badly then?


Heumann

I was just younger. I was stronger. I could help more. I weighed about ninety-five pounds then. I'm about ten, fifteen pounds more. Oh, to be back there, but no. The thing is, when you're first doing something, if there weren't terrible incidents, they don't really make much of an impression. It's the accumulation of things.


Brown

So you didn't notice at the time that it was significantly better or worse to be traveling internationally, but it doesn't sound as though you had done much domestic travel at that time.


Heumann

Right.


U.S. versus international travel

Brown

At this point now, though, do you think there is a big difference between traveling internationally and domestically?


Heumann

I think it also depends on the airline. Lufthansa I had trouble with. Since I've been working for the government, I can only take U.S. carriers. Everything is hit and miss. Sometimes it's a disaster; sometimes it's okay. I mean, in Germany they have this, or had--I don't know if they do anymore--I haven't been through Frankfurt in a number of years. When I was through Frankfurt, they had this separate health clinic, and they made you go to this health clinic. The first time I was there, I had no idea what was going on. If you don't know what's happening and you're in a foreign country altogether, they'd pick you up off the plane.

One of the differences in many of the European carriers--but it's not just European carriers--because once you get to the other country, you use the in-country people. They're more likely to use ambulance-kinds of people. On the other hand, the people they use are much more likely, really, to be able to lift you. So you may not like certain aspects, but part of the problem here with these jobs is they're low-paying jobs, and so you tend to get people who are the more recent immigrants in the country. Like, in San Francisco, I don't know how it is, but they've got a lot of Filipinos who do lifting. Generally, these guys are very short.


Brown

Little.


Heumann

And little. They've got bad aisle chairs in many cases; they don't even have the new ones. They're not trained anywhere like, typically, the Europeans have been. Now, Japan--I don't get the sense of feeling as vulnerable when I am traveling internationally, at least the airlines I've used, even though they may have bad attitudes and everything else. They're typically stronger.



230

Goods and bads of trips

Brown

I think you already addressed this, but how did you feel about the trip to Europe before you went?


Heumann

Before I went? I was really glad I was going. It was exciting. I was going to be going to four countries, and I was just going with a friend. I thought, Oh, this is great. I was very interested in what I was going to learn.


Brown

Did you learn any phrases? "Where's the bathroom?"


Heumann

Oh. I didn't need them in Scotland and England, and in Sweden everybody spoke English, and in Norway everybody spoke English.


Brown

So you were fine. What were some of the best things? I know you already said some of the things, but just off the top of your head.


Heumann

Making friends with Kalle. I think that was the most important of that trip. He's a good friend. He's kind of a soul mate, even though I haven't spoken to him in about three or four months.


Brown

He had a strong influence on your thinking, did he? And you on he?


Heumann

I don't know. I think to the extent that we had similar ideas and we reaffirmed each other, he definitely did for me. It was a short time that I was with him. Over the years, he certainly has. I also admire a lot of his skills. He's a man, so he's got that part of him, too, even though he's got all these other things, and be a little macho guy. But I like him a lot, respect him a lot. Learned a lot from him.


Brown

What would you say about the worst things you remember about the trip?


Heumann

Oh, just this part in England. I mean, that was just anti-Americanism when you didn't even know it. I kept thinking, "Look, honey, I'm sorry that your sister went off to the United States, marrying a guy from the States, but if you were like this then, she probably was smart."


Brown

To get away from you? [laughing]


Heumann

Of course, in England I felt very oppressed based on disability. Rehab International, as primarily a nondisabled organization, certainly then, it kind of, in the back of my mind, just reinforced that if Rehab International would have sent a nondisabled person over there, I really didn't get the feeling that they would have been so disrespectful, which is what I really kept thinking. This is so disrespectful. I thought, Well, if she didn't want to host the trip, she didn't have to. Hardly ever saw her.


Brown

Was she a Rehab International employee?


Heumann

No, no, no. The chapters were volunteers.



231
Brown

Oh, so she was just a volunteer.


Heumann

Yes, yes.


Brown

Anything else you want to say about your trip, the exciting summer of travels?


Heumann

No. Nice scenery.


Brown

Nice scenery! Fun to be in a train car with the cows.


Heumann

The boat. I think I went on a boat ride in Sweden. The fjords. It was all pretty. Yes.

Okay, next.


Applications to graduate schools

Brown

All right, we're moving into graduate school. I'd like to start by asking you just a bunch of general questions about your decision to go to Berkeley. How did you decide?


Heumann

To go to Berkeley? Well, did I tell you that I had been accepted to Columbia?


Brown

I knew that, but you could talk some more about that.


Heumann

I think we talked already about how I had to have a master's degree in five years.


Brown

For your teaching.


Heumann

For my teaching. I had taken this one course at Columbia in community organizing and had really liked it and thought, Oh, I'll apply to Columbia and get a degree in social work with an emphasis on community organizing. So I had applied, and I got in. That, of course, was interesting to me because undergraduate school was so complicated for me--getting into undergraduate school--my grades weren't bad; I had, like, an 88, 89 average. But I got rejected from a number of schools. So I didn't know what was going to happen in graduate school. But in graduate school--I got accepted to really good schools.


Brown

Where else did you apply besides Columbia and Berkeley?


Heumann

No place.


Brown

But you got into them.


Tries for Oberlin Law School

Heumann

I got in. Nothing. No, I actually applied to law school.



232
Brown

I was going to ask you about that. That was in New York, right?


Heumann

No, that was here. That was in D.C. I applied to Oberlin Law School. That was in the seventies. I knew Ralf Hotchkiss. He went with me to the interview. We never talked about this?


Brown

No, we did not talk about this. I found a reference letter from someone, saying you would be a good candidate for law school. But I thought it was dated earlier.


Heumann

Well, it was somewhere between '71 and '73, because I needed to go back to school, so I was thinking about law school. I actually took the LSATs [Law School Aptitude Test]. Those tests were the worst for me.


Brown

Were you thinking of law school? Was that partly your experience with the lawsuit?


Heumann

Probably. The lawsuit. Plus all the work I was doing in DIA. I thought, Well, being a lawyer; that would be good.


Brown

Why did you decide not to?


Heumann

I didn't get accepted to Oberlin. I was interested in Oberlin because it was supposed to be this kind of alternative program, where you were involved in clinics and other things very early on and you weren't just in school the whole time. I remember coming in for this interview with Ralf and myself, and Ralf and I leaving this interview, thinking, forget this. They were totally freaked out at my wheelchair.

We had to live with a family for a period of time. I don't remember how long it was.


Brown

Where was this?


Heumann

Oberlin.


Brown

In Ohio?


Heumann

No, they had an Oberlin law program. It's closed now. I think it only lasted six years. But anyway, I don't know why I didn't get accepted. I don't remember. But Ralf and I knew when we left that interview that I wasn't going to be accepted.


Contact from Ed Roberts

Heumann

So I had been accepted into Columbia. I got a call from Ed Roberts, who I didn't know, who told me that he was involved with this organization called the Center for Independent Living, and they were looking to bring a few disabled activists from different parts of the country out to Berkeley to go to school and to get involved with the center. He had gotten my name from a lot of different people around the country. Would I be interested in coming out to school there?


233

I remember continuing to ask him questions because I couldn't imagine how I could not be living in New York because I had such a system here. He explained about himself and what he did physically, how he used personal assistants and how they had an IHSS [In-Home Supportive Services] program and how I could probably get Social Security. I figured how was I going to get any money? I don't know. I guess Rehab was going to pay for me to go to school here, in New York. I wasn't worrying about money.


Brown

Money for school.


Heumann

Yes, and just living. I spoke to him.


Brown

Had you ever heard of Ed before he called you?


Heumann

No, he was an unknown person. I never heard of CIL.


Brown

I thought you--


Heumann

No, no. I had heard of CIL. I had just heard of CIL at the last demonstration, with Dick Santos and Larry Biscamp.


Brown

But you didn't know much about it.


Heumann

It was an unknown organization.


Brown

It didn't sound to you like something, oh, I'm going to drop everything and move out there.


Heumann

When I first met Larry and Dick? No, no. But they had told me a little bit about it, so when I spoke to Ed, I guess I had a little, little, little bit of information about it. So I applied to City and Regional Planning at Berkeley. That didn't require me to take the Graduate Record [Examination], GREs. Oh, that was another thing. I had sworn to myself that I was never in a million years taking one of those tests again.


Brown

After the LSAT?


Heumann

First it was the SAT [Scholastic Aptitude Test] disaster and the LSAT. I just do not test well, and I thought to myself, if I'm going to go to school, which I would like to do, I will not deal with these tests anymore. Too old. Been there, done that. Doesn't demonstrate what I can do. They didn't even ask me to take it. So it wasn't like I had to say I didn't want to take it. Columbia didn't require it, which is why I didn't take it for Columbia.


Acceptance at UC Berkeley

Heumann

I got accepted to City and Regional Planning, and a couple of weeks later--what had happened was that there were two professors--Fred Collignon and Henrik Blum--Fred Collignon from City and Regional Planning at Berkeley, and Henrik Blum from the School of Public Health. They, I guess, decided that they wanted to try to get some


234
disabled students onto the campus. I mean, they had some, but in these programs. So they were involved with Ed--or Ed and they were working together--on trying to find some students.

What ultimately happened was after I had been accepted, a couple of weeks later, I got a call and said, "What would I think about the School of Public Health because they had accepted too many disabled students into City and Regional Planning?" Quite frankly, it was a blessing because I would not have lasted in City and Regional Planning but thirty seconds.


Brown

Because?


Heumann

It wasn't my thing. I mean, I'm sure there are courses there I would have liked, but some of the courses they had to take I was not interested in. So I kind of joked about it and said, "Yeah, okay." I didn't know what City and Regional Planning was. I didn't know what Public Health was, so it didn't really matter to me. If I was going to go out there, whatever. But Public Health was really a much better fit for me.


Brown

Did you find out more about it when they asked you that? Were you conscious that it was a better fit for you? Did it make more sense? Or was it you had these two options?


Heumann

Well, they told me to go [to] this one first. There were two places you could go. It was one of these things. Again, I mean, on a certain level there's something funny about this. When I went to Rehab, wanting to be a teacher, and not saying that and knowing that they were paying for women to become speech therapists and social workers, and saying I wanted to be a speech therapist and then say I should be a social worker, so here it was again, two choices, and I made the wrong choice. Here it was City and Regional Planning, and Public Health. Picked City and Regional--well, I didn't pick it. They asked me, "Do you want to apply for that?"

Funny. Limited options and still get it wrong most of the time! It's like should I go left? I go right. Should I go right? I go left. But I was terrified being in Berkeley. I think Zona [Roberts], no, Carol Fewell met me at the airport, I believe. I did not fly out there by myself. I got my friend Nancy D'Angelo, who later died--the two people that came out from New York, who I was friends with--both died. Both got heavily involved in drugs.


Brown

Nancy moved out to Berkeley.


Heumann

With me. We flew out together. We rented an apartment together. I was not going alone. She had a disability, so it was not that we were going to help each other out physically. But it was just that we could be moral supports to each other.


Brown

I'd like to come back to that after I ask some more before you went to Berkeley questions. Do you remember when the decision that you were actually going to go to Berkeley, when that was? Did you start school in the fall of '73?


Heumann

Yes.


Brown

But that summer you were traveling, did you know you were going to go to Berkeley before you went to Europe?



235
Heumann

Yes.


Brown

So you didn't visit the campus. You didn't visit at all before you decided? It was just, like, "Oh, I'll go."? Did you try and do any research to find out what it was like, or you just figured it's just for a couple of years; I can handle it?


Heumann

I didn't do any research. I didn't know who to research with. There were no computers you could pick up and say, "Show me Berkeley." I mean, I had heard of Berkeley, of course. It was a very good school, and it was a hotbed of political activism, at least in the sixties.


Brown

So you knew about that.


Heumann

Oh, sure. I knew about Berkeley. I just didn't know anything about CIL.


Brown

Or the city of Berkeley. I mean, the community.


Heumann

Well, you know, it's a small place, so you kind of assumed it was one and the same. No, I didn't do a whole lot of anything. I just did go. You know, you're right. It was like I was going to be there two years; I needed a degree; if I could get a degree at a good school, that would be great.


Indecisive about continuation of teaching

Brown

So that was your plan. You were going to go to graduate school, get your degree--


Heumann

And leave.


Brown

--and then go back to New York and teach?


Heumann

Well, I didn't know for sure if I was going to go back to New York and teach, but that certainly was a possibility. Honestly, I was burning out on teaching. The fact that I didn't go to get a teaching credential, to me, probably meant that I wasn't going back. But I hadn't closed the door on it.


Brown

Did you assume you'd be moving back to New York?


Heumann

Yes.


Brown

I was going to ask how did you hope to use your degree in public health, but it sounds as though you were just getting the degree.

[cross-talk]


Heumann

I was getting a degree--no, I was getting a degree in public health.



236
Brown

But, I mean, it's not you were getting a degree in public health so that you could then become a public health educator.


Heumann

No.


Brown

You were getting a degree, and it happened to be in public health.


Heumann

I needed a master's. They didn't care what your master's was in. The master's in community organizing made sense to me and actually even felt that if I stayed in teaching would be beneficial because it was the sociology of poverty and things of that nature, so I thought that could be helpful. But, no, really, it's kind of funny to think that I left and went completely to another part of the country. I didn't know anybody, but I did believe what Ed had said about the programs there. I did also feel like, well, you know, if it doesn't work out, you go back.


Brown

Right.


Heumann

Going with Nancy was important because I really would not have gone by myself. That was like having somebody there who I knew, came from similar communities, and so it kind of felt like there wasn't much to lose.


Brown

It sounds like there were two things that would make me ask this next question, and they're opposed to each other. The question is was it hard for you to leave the East Coast? You were very close with your family, but you also sort of thought you were probably going back.


Heumann

Exactly.


Brown

You'd only be gone for a little while. How was it, thinking about that?


Heumann

Again, it wasn't that I saw myself living there.


Brown

But you were to be gone for a few years.


Heumann

Right, but I knew I'd see my parents. I mean, I came home at Christmas. I didn't see them anywhere near as often as I did, but at this point I was twenty-five. I had a cousin who had gone to graduate school in Michigan. Actually, he was in Michigan when I was in California. My brother Joseph, I guess, was in Iowa. He had gone to undergraduate school. So when he had left to go to school, okay, I can do the same thing.


Contact with Center for Independent Living

Heumann

My parents visited. I think they visited. They did later on. I don't even know if they went there when I was first there, actually. I can't find out.


Brown

So you went to Berkeley for the school and for the community?


237

[cross-talk]


Heumann

No. It was clear that when I went out there, I was going out there to get involved in CIL and to go to graduate school. I was interested in seeing what was going on at CIL because of the work that I was doing in DIA, so it wasn't really just to go out to graduate school. It was going to graduate school, but I got elected to the board almost right away and got very active in the organization. I was kind of a second round of people. You know, I wasn't part of the founders, but I was pretty early on. It was September, October that I got onto the board.


Brown

When did you arrive at Berkeley, right before classes?


Heumann

Yes, pretty soon before.


Brown

August, September of '73?


Heumann

It wouldn't have been August. The schools usually started later there, I think. Whenever it was--


Brown

But it was only a month or two before you were on the board.


Heumann

Oh, yes. I actually lived in an apartment building on Haste Street, where CIL had an office.


Brown

Right next door, or really close?


Heumann

I don't remember if it was on the other side of the floor. The building that I was in had a courtyard in the middle. The building was built around the courtyard. There was a terrace around it. I don't remember if I was on the same floor or they were a floor below or something, but I could see them from my apartment.


First impressions of city of Berkeley and campus

Brown

What were your first impressions of campus? I'd also like to know your first impressions of the city of Berkeley. Pick and choose how you want to answer that.


Heumann

Hmm.