Disability Rights and Independent Living Movement Oral History ProjectNew York Activists and Leaders in the Disability Rights and Independent Living Movement, Volume III
Interviews conducted by
|
Acknowledgments
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.
Regional Oral History Office
The Bancroft Library
University of California
Berkeley
Disability Rights and Independent Living Movement Oral History ProjectAnna FayEarly Disability Activist: Organizer with National Paraplegia Foundation, American Coalition of Citizens with Disabilities, and Center for Independence of the Disabled in New YorkInterviews conducted by
|
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 Anna Fay, dated September 9, 2002. The manuscript is thereby made available for research purposes. All literary rights in the manuscript, including the right to publish, are reserved to The Bancroft Library of the University of California, Berkeley. No part of the manuscript may be quoted for publication without the written permission of the Director of The Bancroft Library of the University of California, Berkeley.
Requests for permission to quote for publication should be addressed to the Regional Oral History Office, The Bancroft Library, Mail Code 6000, University of California, Berkeley, 94720-6000, and should include identification of the specific passages to be quoted, anticipated use of the passages, and identification of the user.
Citation
It is recommended that this oral history be cited as follows:
Anna Fay, Early Disability Activist: Organizer with National Paraplegia Foundation, American Coalition of Citizens with Disabilities, and Center for Independence of the Disabled in New York, an oral history conducted by Harilyn Rousso in 2002, in New York Activists and Leaders in the Disability Rights and Independent Living Movement, Volume III, Regional Oral History Office, The Bancroft Library, University of California, Berkeley, 2004.
Tape Guide
- Tape 1, Side A 9
- Tape 1, Side B 19
- Tape 2, Side A 30
- Tape 2, Side B 39
- Interview 4: October 16, 2002
- Tape 6, Side A 49
- Tape 6, Side B 59
- Interview 2: September 25, 2002
- Tape 3, Side A 66
- Tape 3, Side B 75
- Tape 4, Side A 83
- Tape 4, Side B 92
- Interview 3: October 9, 2002
- Tape 4, Side B continued 93
- Tape 5, Side A 102
- Tape 5, Side B 110
- Interview 4: October 16, 2002 continued
- Tape 6, Side B continued 117
- Tape 7, Side A 119
Interview History--Anna Fay
Anna Fay was invited to participate in the oral history project because of her leadership in disability rights and independent living activities in New York City during the 1970's. She founded the Metro New York chapter of the National Paraplegia Foundation, was a key player in major advocacy victories on the local level, and was involved in the start-up of the Center for Independence of the Disabled in New York (CIDNY), the first independent living center in New York City. In addition to these contributions, Anna Fay played a significant role in the work and history of the American Coalition for Citizens with Disabilities (ACCD), a major national disability rights organization in the 1970's and 1980's.
The interviewer had a collegial relationship with Anna Fay at the time of the interview. The two had met at numerous disability-related events over the past two decades, and Anna, when she was director of the Yonkers Independent Living Center, had replicated the mentoring program for adolescent girls with disabilities that the interviewer had started in New York City.
Ms. Fay's four-session interview took place on September 9, September 25, October 9, and October 16, 2002. The first three sessions took place at Premier HealthCare, a health care facility for people with disabilities where the interviewer serves as a consultant, located at 34th Street and 10th Avenue in Manhattan, New York. The fourth session took place at the Westchester Independent Living Center in White Plains, New York, where Anna Fay works as the coordinator of their Consumer-Directed Personal Assistance Program. A fourth session had not originally been planned, but was made necessary when the interviewer inadvertently recorded over side A of one of the early audiotapes (Tape 3), thereby erasing the last twenty minutes of the first session and the first ten minutes of the second session. The fourth session, covered by the last two audiotapes (6 and 7), sought to recover the erased material but then went beyond that to include some new material. We have inserted the text from the fourth session into the transcript where it fits most logically. We have indicated these insertions with an "editor's note."
Highlights in the interview include what Anna describes as "watershed moments" for herself, and, by implication, for the larger disability community, such as when she became aware that people with disabilities had power, that they were entitled to rights, not just services and charity, and that disability could be a source of positive identity and culture that cut across disability types. The interview also documents the evolution of the disability rights movement in New York City, as well as the birth and early politics of CIDNY, which has now has been in existence for more than twenty-five years and has served as a model for independent living centers throughout New York State and beyond. Finally, the interview provides useful information on the conception, achievements, and decline of ACCD, as well as some background on one of its founders and leaders, Phyllis Rubenfeld, who, until her untimely death in the late 1990's, had been a lifelong friend and colleague of Anna Fay's.
Interviewer
I. Childhood, Education, and Early Activism
Polio onset and hospital experience, family interactions
This is an interview with Anna Fay.
Tell us when you were born.
Fay
I was born in 1938, October, in--well, we were living in the Bronx at the time. My parents had moved from Manhattan to the Bronx when my mother became pregnant.
[tape interruption]
Rousso
Tell me a little bit about your parents' background.
Fay
My father was one of I guess six children, five children, actually, of European parents. They came from Italy. Only one of the children was born there. They came here, actually, quite early in their marriage. My mother's mother was born in this country, but her father was born in Italy. They essentially met in the neighborhood. You know, it was East Harlem, and there were social things. My father actually liked to say that my mother hit him with a bean bag, so he had no--they were at some sort of a social--[Laughter.] They were at a social event of the union settlement. I guess they both went for recreation and stuff. There was some sort of recreational activity, and you went around and with a beanbag selected the boy that you wanted to dance with or something like that. So my mother hit my father in the head with a beanbag. So, of course, we heard this forever.
So that's how they met. They courted for about five years before they got married.
Rousso
When did they get married?
They got married in the early thirties. My mother worked for the New York phone company, and my father worked since he was about eleven years old, at the time they got married. He quit school. He never finished school. My mother did, but he didn't, because the family--they lost his mother when he was eleven, and so he went out to work, basically, after that, carrying ice for people--you know, those kinds of things.
He ended up being a cabdriver, and that's what he did--a New York City cabdriver.
Rousso
That's quite a story.
Fay
Yes, so he's got stories. I'm sorry that he's gone now. He wrote a lot of them over the years.
Rousso
He did?
Fay
Yes, and I can't find that document. I don't know where it is. They were really wonderful. They should be part of history, too. They really were wonderful.
Rousso
I know what you mean.
Fay
They were basically very family--extremely family oriented and valued family tremendously. My grandmother, my mother's mother, actually lived with us, and so I grew up with that. I grew up with it, and so when the time came for my parents--my mom and dad moved to Florida, and then when my mom passed away, my dad moved back up with me. So it was almost--you know, it wasn't anything unique about that. That was just a given.
Rousso
It was natural, a natural progression.
Fay
Exactly. Exactly.
Rousso
Do you have brothers and sisters?
Fay
I have one sister, yes. She's younger. She's seven years younger than I am, yes. We're very close, although she lives in Texas. She relocated after she got married. But we're still really very close. Phone contact many times a week.
Rousso
Does she have children?
Fay
She has four. Yes, four children.
Rousso
Does she work?
Fay
Yes, she does. She's a nurse, so she works part time in a--right now it's an adolescent psych center, but she also works at home for the archdiocese in Texas. She's developing a--what do they call it now? Basically it's a respite program for the archdiocese, and she's doing a lot of the training of volunteers who would be able to relieve caregivers.
Rousso
Important work.
Yes, yes, definitely.
Rousso
All right. Tell me a little bit about how old you were when you became disabled, when you got polio.
Fay
I was seven when I got polio.
Rousso
Do you remember what year?
Fay
In 1946. I had just begun school. Actually, it was September ten. I had gone back to school Monday and found out that I had actually skipped a grade in those years. I don't think they still do that.
Rousso
What grade?
Fay
I had skipped the second grade, and they had placed me in the third grade. So we were all excited, and I came home and told my mom and whatever. But I wasn't feeling very well. I remember I had pains in my feet, and I basically didn't feel right. So this kind of progressed over the week until I couldn't walk, by Thursday, I guess, or Friday. Then I was taken to the hospital. In those days, there were infectious disease hospitals that people went into.
Rousso
Where did you go?
Fay
I went initially--for the diagnosis and an overnight stint, I went to a hospital in the Bronx called Morrisania. That doesn't exist any more. And then from there I went to this infectious disease hospital, which was in Manhattan, Willard Parker, which doesn't exist anymore either. That was torn down a long time ago. I stayed there until I was able to be transferred, and then I went to what is now Helen Hayes, then--get this, Harilyn: you know what it was called?
Rousso
No.
Fay
You don't want to know? [Laughs.]
Rousso
The Institute for the Crippled?
Fay
Just about. It was called the New York Reconstruction Home. Oh, God, is that awful? [Sirens in the background.] That's where I was. I was there for over a year.
Rousso
Did they have any idea how you got polio? Had you been doing anything, swimming or anything?
Fay
No.
Rousso
Anything before you went to school?
Fay
Not really, no. They didn't know. I mean, I had been up actually at my aunt's in Connecticut, which was almost--it was rural. It was really, really in the country. My mother thought--for a while, they, my parents, were speculating that it might have been
Rousso
This was before your sister was born?
Fay
No, my sister was just born. My sister was born in '45, so this would have been--she was under a year. She was less than a year old.
Rousso
And so your mother had her hands full.
Fay
She really did. She really did. And she was nursing my sister, so she was really having to go back and forth. Haverstraw [New York] then was quite a distance, even from the Bronx. To get there was not easy.
Rousso
Did your parents have a car?
Fay
Yes, we had a car, but during the week, my mother took the bus. She wanted to be there--they both wanted to be at the hospital as much as they could, so what they did was volunteered to work there. My mother worked in the kitchen, in the dining room, the physicians' dining room, and so she would serve them on Wednesdays. That way, she was able to see me. And my father actually ran the movies for the kids on Friday nights.
Rousso
Oh, really?
Fay
Right. So he would come up. He and other parents would come up, and they would run the movies, and that way also we'd get to see them.
Rousso
Now, tell me, how long were you in the hospital?
Fay
I was in Haverstraw for over a year. I left probably--it was probably, like, thirteen or fourteen months that I was there.
Rousso
Do you remember what they did to you?
Fay
I do. It was overall not a very--how can I put this? There are some horrible memories from there, really bad ones. Things like, you know, being--there were horrible memories from the beginning of it all the way. Very unpleasant. I remember being at Willard Parker--no, we'll go to Haverstraw, the Reconstruction Home. They didn't know what to do with my hair. I had very long hair. My mother used to braid it and put it up, and it was like the crowning glory, I didn't cut it. So it was really quite long, and it was difficult to manage because I wasn't sitting up; I wasn't doing much of anything.
So when I got to Haverstraw, they decided, since it was hard to comb it out and stuff, that--it was braided, was what it was. So what they decided was that my hair should be cut, so they took both braids and they cut them.
Rousso
Huh!
Fay
Just cut them off.
Oh, how dreadful.
Fay
It was horrible.
Rousso
How dreadful.
Fay
Horrible.
Rousso
Poor you.
Fay
It was just--you know. And my mother was livid. She was furious when she came and saw it. Not only was this a terrible thing to do, but of course what it looked like afterwards was this chopped-up hair. So there are many memories that, in retrospect, when I think back, it's difficult to know--I mean, they were abusive. They were truly abusive.
Rousso
Sounds like it.
Fay
Yes. You know, you're a child, so there's no frame of reference to put any of this in.
Rousso
No.
Fay
So you're just the recipient of these terrible things.
Rousso
Over which you had no control.
Fay
Exactly. Over which you had no control, exactly. Putting you over a barrel to stretch out your spine. It was bizarre! Like torture chambers. I mean, I would talk to my friends afterwards who had been there with me, being adults now. We are, like, incredulous that we got through this, you know--
Rousso
Yes.
Fay
--with a modicum of mental health. I don't know. [Laughs.] It's really quite amazing, quite amazing.
Rousso
Did you make friends? Did you have a group of other young girls?
Fay
Yes. As a matter of fact, they were friends that I ultimately, all those years later, saw and worked with with the disability rights stuff.
Rousso
Really?
Fay
Of course, Phyllis Rubenfeld being one of them.
Rousso
Is that where you met Phyllis?
Fay
Oh, yes. We knew each other from way back, yes.
Rousso
Heavens.
Yes. And Eileen Healy was another person that I was at Haverstraw with.
Rousso
How do you spell Haverstraw?
Fay
It's H-a-v-e-r-s-t-r-a-w, Haverstraw. It's where Helen Hayes is. We called it Haverstraw. At the time, it was, for the most part, it was really kids with polio or young adults who had polio.
Rousso
Right. The whole thing?
Fay
Yes, just about the whole thing was, yes.
Rousso
And were you more significantly disabled when you first got polio? Were you ever able to use your arms or your legs?
Fay
When I first got polio, I was pretty much totally paralyzed. I wasn't able to move anything. That was really before I went to Haverstraw. And then when the disease I guess stabilized, when I stabilized, I was left virtually--I had use of my arms, but my trunk muscles and back muscles and things like that were extremely weak, so I had to learn to sit and to really start pretty much from scratch again. But pretty quickly, it was clear that the paralysis had been pretty much from the waist down, so I couldn't walk.
Rousso
How did your parents react? What is your sense of how they dealt with this big change?
Fay
It's hard to say. Well, they dealt with it by just about dedicating themselves to finding people or someone who was going--at least initially, someone who was going to make it all better. We were going to go places, we were going to do things, we were going to--you know, and I did go to many--even when I left Haverstraw--I left Haverstraw still not independent, really, walking with--I believe--yes, I had braces, but I didn't use them. They weren't functional, really.
Rousso
Were you in a wheelchair?
Fay
So I was in a wheelchair when I left Haverstraw, exactly. But my parents still took me places, my father being a New York City cabdriver. For example, he had a passenger, and at one point this woman--I guess they got to talking, and he mentioned to her that he had a daughter with polio and whatever, and she said, "Oh, I have this wonderful doctor," you know, "and let me just arrange for you to see him. I know he'll be able to help." He was an orthopedist and was a very kind man, as I remember him. But, of course, he couldn't do anything much more than what had already been done.
And we went to chiropractors--I mean, you know, every day was--
Rousso
Looking for the cure.
Fay
Exactly.
Rousso
Looking for the cure.
Fay
Looking for the cure. And I guess that in my heart of hearts, I knew there wasn't a cure.
Right.
Fay
Yes. It was, like, "Okay, Mom and Dad, you can do this, but I don't think anything is really going to work." So eventually they realized that. Then they dedicated--then the focus was providing me with what I needed to be independent, whatever that was. And the expectations were not very high.
Rousso
By your parents?
Fay
Yes, because they didn't know, Harilyn, you know? They really didn't. There was special education. I was on home instruction for--
Rousso
We're going to get to that, your education. I'm sure that's a whole story.
Fay
Yes, yes. So they really didn't have, there were no role models.
Rousso
No.
Fay
So their concern--it was a realistic concern--was that if I was not able to earn money or do something to be self-supporting, I was going to be in an institution. And that was the reality. So for them, it was very important that I learn something, learn how to be independent. And getting out of the house, I wasn't coming and going independently. There were stairs to the house. I don't think they even thought about getting--
Rousso
They didn't think about moving.
Fay
Right. At that point, they could have moved. I took music lessons, and that's how a lot of--I was going to teach music. That, I could do at home. Children could come to me, or people could come to me.
Rousso
What kind of music, piano?
Fay
I took accordion lessons and then some piano lessons afterwards. That became important to me for a lot of other reasons, but that was the primary reason, was to do something that would give me--
Rousso
Independence.
Fay
Right, that would give me independence, so that was their goal for me, but it wasn't go to college or any of those things. I don't think they really could see beyond the obvious. You know, how am I going to get out of the house to go to college? That kind of thing.
Rousso
Right. When you were in the hospital, did you go to school? Was there a school at the hospital?
Fay
I had to have gone to school, but I don't have any memory of that, Harilyn. I know that there were classes, I know that I got some sort of a--I can't even tell you what this was for. They called it a scholarship. It was, like, twenty dollars or something, for something. It had to do with school. I have no idea what it was for. I don't know. I know I went to a ceremony. They had to go find a dress for me to wear to go to--you know, a
It's funny, because that's the only thing. I don't have too many memories blocked. A lot of my friends do. Like, they still don't remember the whole experience. But quite to the contrary, I remember a lot about getting polio, that whole year. But what I don't remember is anything having to do with school.
Rousso
You said that you have some friends there, that you made friends. Was that a support in the hospital? Were you really friends? I know you were young and that makes it hard.
Fay
Right. I think it was, but certainly not as it would be if I were older. The biggest support while I was in the hospital was my family, and through that whole period. It was really the most important--but yes, there were--you know, the girls that I was with--there was some level of peer support, yes.
Rousso
Was it on a ward?
Fay
Yes, it was a ward. That's exactly what it was.
Rousso
With lots of kids?
Fay
With cubicles and there were, like, two people in a cubicle, and there were glass things separating us, so we could sort of see one another because of the glass. We could see where we were, but there was also some sense of privacy or, like, a room. But basically we saw each other at therapy or when we were able to eat in the dining room or swimming. There was a pool, and that was part of the therapy, so we would see each other there.
Our parents--you know, a lot of us--this is an important point because my parents became friendly with other parents, like, from the Bronx and from Manhattan, so we became--the girls of those parents became....
Rousso
Became friends.
Fay
Right. Became friendly.
Rousso
Because the parents kept meeting.
Fay
Exactly. Right, right, exactly. So we had some of that even after I left the hospital.
Rousso
Did those parents continue to stay connected after the hospital?
Fay
Not really.
Rousso
Just when you were in the hospital?
Fay
Yes, that was mostly where they connected.
Rousso
Were you very homesick while you were there?
Oh, terribly, terribly.
Rousso
You were living there all by yourself.
Fay
Terribly. And the first day that I was actually admitted to Haverstraw--I can't call it the Reconstruction Home; I guess that's why I've always referred to it at Haverstraw. [Laughs.]
Rousso
It's in Haverstraw.
Fay
It's in Haverstraw, right. [Laughs.] Yes, the first day I was admitted, I was admitted to a private room. It was a room off the ward, so I was alone.
Rousso
Oh, how terrible!
Fay
Oh, when my parents left, I remember, Harilyn, like it was yesterday. I remember screaming, just terrible. When I think about my poor parents, my poor mother--oh, God! But I was just terrified.
Rousso
I can just imagine.
Fay
Yes, it was pretty awful. I was very homesick. I wanted to go home. I did not like the whole institutional--I didn't like the nurses, I didn't like the therapists--I mean, none of these people.There was one physician, and that was it, who I guess I felt cared. There may have been more, Harilyn, but--
Rousso
A man?
Fay
A man, yes. He was a really--I remember his name, Dr. Fletcher. And again, that probably has a lot to do with my parents' influence as well, because he was very, very good with parents. He would meet with them and talk with them. He supported them, helped them understand just what was happening physically, what to expect--you know, those kinds of things.
But polio was a terrible, terrible disease. It really was. It was every parent's worst nightmare.
Rousso
Had you heard about it before?
Fay
Oh, yes. My mother was very, very protective before I got polio and didn't allow me to play with other children in the summer. I couldn't go to the park. I remember a lot of the playgrounds had these sprays. I wasn't allowed to go there. Please! Germs are all over the place. Or the beaches or any of that. Ironically.
Rousso
Right. She really made the effort--
Fay
Right.
Rousso
--to protect you and it really didn't work.
Right, right.
Rousso
Did she feel guilty?
Fay
I'm not sure if she felt guilty, but she did mention--on a lot of occasions, she would say to me--she would say that perhaps if she had let me play with other kids, whatever, I would have built up an immunity, that I didn't have an immunity to the disease.
Rousso
Oh, poor her.
Fay
Yes. Right. Yes. So she--you know, I guess she did have pangs of guilt. Probably all parents do, to some extent.
Hospital and in-home schooling and quality of education
RoussoHow about when you got home? Tell me about your schooling. I know you were on home instruction. How did that happen?
Fay
I'm not sure how it happened. I think once I got home, there was probably some communication between whoever the teachers were, whatever education I was getting in the hospital. There may have been some referral to the New York City Board of Education, but somehow I managed to--or my parents were involved, my mother. I really don't know how it was arranged, but I ended up having the teachers come to my house. That's how I got started.
Rousso
How often did they come? For how long? Do you remember?
Fay
Yes. The sessions, Harilyn, were, like, an hour and a half, and depending on their schedule and how many kids they had to see in a week, it could be maybe three hour-and-a-half sessions a week or, if you were lucky, it might be up to nine a week. Like, you might get two sessions a day, three days a week, something like that.
Rousso
With the same teacher?
Fay
With the same teacher.
Rousso
One teacher.
Fay
One teacher, yes. Yes. Again, it's interesting that the pieces of stuff that I don't remember have to do with my education, but I don't remember too much of my education until I got to high school, the home instruction.
Rousso
Did you have the same teacher until you got to high school?
Fay
Yes, it was the same teacher, Miss Gilbert--where did that name come from?
Rousso
Oh! Wow!
God! Where did that come from?
Rousso
That's really something, that you remember.
Fay
[Laughs.] And then, once I got to high school, it was also the same teacher.
Rousso
Oh, really?
Fay
Not the same woman, no, no, no. I meant the same teacher through high school. Gilbert was before high school, and Kovinow--I remember him, K-o-v-i-n-o-w. He was, again, a very warm person. So was Miss Gilbert. They really both were. But he was more--let's see, how can I put this. I think he saw beyond my teaching music as something I would do for the rest of my life. He helped my parents, my mother in particular, again, to see beyond that as well. And so college then became something to think about.
Also, another friend of mine, a friend I made, actually, at Haverstraw, and my parents knew her parents--she had gone to college, the same college that I ultimately went to, so it was like--you know, there may be something more out there. And she provided--because she was older than I am--so she provided that--
Rousso
Possibility.
Fay
The possibility. Exactly, exactly.
Rousso
Did they teach you every subject or did he focus on just a few?
Fay
Well, you can't do them all. You can imagine. I mean, they were supposed to, right, but we would end up, particularly with Mr. Kovinow, because he and I had very similar interests. I was interested in the sciences, and so was he, so I did very well in biology, but I did not do well in history; I didn't do well in math. I did relatively well in languages, but language was--that was a special teacher, a separate person that came in to teach the languages, right. But he--you know, we enjoyed each other's sessions, but they were wholly inadequate.
Rousso
How did they teach you science labs? Most high school science has labs and things. Did he come and do labs?
Fay
No, there was none of that, Harilyn. It was all, you know, hit the books and read the books, and then he would sort of quiz me. And then we would discuss things. We would talk about whatever it was. But it was not, again, a very good experience. I always felt inadequate, always felt inadequate because I knew what my friends, nondisabled friends were doing, and I knew I wasn't doing anything nearly like that.
Okay, go ahead
Fay
In terms of my education, I think I knew all along that I was not really learning what my friends were learning. I knew that. This didn't take much.
You mentioned your friends, your nondisabled friends. Did you have a community of nondisabled friends?
Fay
I wouldn't call it a community, but I did have maybe two friends in particular that I can think of now, who were friends after I got polio. Instead of going from--
Rousso
Had they been your friends before you got polio?
Fay
Before, yes.
Rousso
They stayed with you?
Fay
They stuck with me, right. The two of them--we were of the same age; they may have been a little bit older than I was, but basically--I mean, they were talking about what they were reading and what they were doing in math, and maybe just referred to it. I didn't even let them know that I didn't know what they were talking about, so I always had a sense of inadequacy. Really. And that somebody was going to find out how really--you know, unsophisticated I was or how little I really knew, how little I really knew. And I was fooling everybody.
Rousso
That must have been so hard, because you were a very good student until you got polio.
Fay
Yes.
Rousso
You were going to skip a grade.
Fay
That's true. That's true. You're right.
Rousso
Had you seen yourself as smart until that point, or didn't you think about it?
Fay
I don't know that I thought about it, but I certainly didn't think about it then, Harilyn. It wasn't anything--I did not externalize any of that. I internalized it all. I did. It wasn't that I thought: "I don't know anything because this is a system that discriminates" or any of that.
Rousso
No, of course not.
Fay
I wasn't outside of me at all. It was all inside of me.
Rousso
You saw it as something wrong with you.
Fay
Right. So now there is something wrong with me, exactly. The music was very important to me. I just actually made that connection. There was an annual concert that my music teacher gave, and I participated in that, and I knew I was as good, if not better, than some of his other students. And I know that, while I resented it on one hand, I knew that it felt good on the other hand, that people were, wherever we went, it was like--
Rousso
People appreciated your talent.
Right. They'd say, "Play the accordion. You can play the accordion." It was kind of like, on the one hand they didn't want me without the accordion, which did not make me feel very good, but then there was something that people really acknowledged that I did well, so it was a good thing, by and large. But school was--never. It was terrible.
To the last year in high school, when we had to take Regents--
Rousso
Yes. Did you take them? Did you pass them?
Fay
I took them, and I passed all of them except the history Regents, and I cried, Harilyn, and carried on. Ohh! It was just awful. I wanted to repeat it because I wanted to get that awful blemish off my record, that failure, that terrible failure. All I could think of was, "Let me do it again. Let me do it again. Let me do it again. I've got to pass it." My teacher said, "What is it going to do for you? Why do you want to do it again? What are you thinking?" And he was wonderful. He really and truly was. He said, "You can do it again, but this will mean another six months, and--"
Rousso
You didn't need it to graduate?
Fay
I didn't need it to graduate, but I didn't graduate with a Regents diploma. I had the subject credit, but I didn't have the Regents credit. But did that matter in the long run? No, of course not. But then it was the end of the world. It was just awful. And then going to college took about everything I--. That's where they were really going to find out what I didn't know.
Rousso
When did you graduate high school? Do you remember?
Fay
In 1957, I guess. I skipped again, by the way.
Rousso
Oh?
Fay
This was strange. I was admitted to Bellevue Hospital when I was eleven. I guess it was 1951, something like that, '50 or '51, for rehabilitation, and since I was going to be there for several months and I was in school, my mother and the doctor, both, wanted me on the adult service; they didn't want me in pediatrics. They had to falsify my age. I was eleven. So they had to say I was thirteen in order to be eligible to be on the adult service. So I was, they thought, thirteen, and when I went to school there, I guess they tested me again--I don't know; I really don't remember--and decided that I shouldn't be a grade behind because they thought I was thirteen. So what they did was push me up to my grade level, which then put me ahead yet again, so I was a year ahead. So I graduated high school at sixteen. That's the bottom line. I was sixteen when I graduated.
Rousso
Do you remember anything about the hospital school, in Bellevue, what that was like?
Fay
Just a vague memory of having to take the elevator to go to this room. Again, just a very vague memory of a teacher and maybe one or two other students. That's it. Not of learning anything, no.
Rousso
Tell me a little bit, before we go to college, about your social life during high school or even younger. I know you had nondisabled friends.
Right.
Develops fantasy life as a child
RoussoDid you have disabled friends as well that you'd hang out with?
Fay
Let's see, take it I guess up until I was twelve. Basically the friends that I had were the friends I mentioned to you. They would come into the house because I didn't get out. We would talk and do, I guess, the usual preteen kinds of--make up stories. I made up a lot of stories, Harilyn.
Rousso
Did you?
Fay
Yes. Oh, yes. I made up a lot of stories. Basically--I don't know what they were telling me, but I can tell you, boy, I had the richest life. [Laughs.]
Rousso
You mean you told them stories about what you were doing?
Fay
I told them stories that were not true. That's it. My uncle used to take me swimming, the Catholic Youth Organization every Saturday at the high school there. That was one thing that--
Rousso
Was that a group of--
Fay
A group of disabled kids.
Rousso
Disabled kids?
Fay
Right. They opened a pool on Saturdays for kids, so my uncle would take me, because my father worked. So there I got, again, to meet other disabled kids, but it was like for a couple of hours. But I could make up stories about how little Johnny just thought I looked wonderful, or this one thought I was so smart, whatever. But I would embellish on--I would take one small little thing and make up this big story about it. So it was like a fantasy life. It was really like verbalizing a fantasy. That's exactly what it was.
Rousso
It probably helped you survive during your very isolated life.
Fay
That's probably true. That's probably true.
Rousso
Did you join any of the other disability groups? I know there was the Carolians, and there were camps and things. Did you do any of those things?
Fay
I did. I was twelve the first time I got to the Carolians, when I went to camp, and I loved it. I just loved it. It was really the first really fun experience with other disabled kids, doing, "normal" things, you know? Not hospital related or disability related or anything. It was just kids together having fun--you know, swimming, arts and crafts, dramatics, music, all those things.
Was it a camp for Carolians?
Fay
Yes.
Rousso
Was it something during the year, too?
Fay
It was. It was during the year as well. But I didn't participate in those things because I couldn't get out.
Rousso
I see.
Fay
The Carolians--and Phyllis and I met up again during the Carolians. You know, it's funny, because we talked about this. Even at camp, I was the only camper in a wheelchair.
Rousso
Really!
Fay
Yes, yes. The rest of the kids were ambulatory and able to walk and stuff, but I was the only one. And it is interesting because during the year, once in a while the Red Cross would--I remember going to maybe two Saturday programs. They used to have Saturday programs.
Rousso
That's right.
Fay
I may have gone once or twice, and at that time, the Red Cross transported me. I remember that. But it was getting me out of the house, down the stairs, into the car--you know. So no, for all intents and purposes, I didn't participate in the city program, in the Carolians. It bothered me. Again, I resented that, that I couldn't do what the other kids did during the year, because they would be talking about a whole bunch of things that--
Rousso
Did you resent it because you couldn't get out of the house, or did you resent being in a wheelchair? Or was it not that specific?
Fay
It was probably not that specific, Harilyn. I think it was more I resented not being able to be with them and have fun. They were doing things--
Rousso
They were enjoying themselves.
Fay
Right. They were enjoying themselves, and I resented not being able to be there.
Rousso
And the summer camp--was that sleep-away?
Fay
Oh, yes. It was one month, actually. It was four weeks. They had two sessions in July and August. I was very, very ambivalent about going. I didn't really want to go. But my mother, who had had a very positive experience with camp when she was a kid--she decided that this was going to be good for me, and so she really pushed me. My father was--he didn't want me to go, and he was very--I guess his little girl--you know, letting go his little girl.
Right.
Fay
But it ended up being just--I mean, I didn't want to come home. I was independent. I had a wonderful time when I was there.
Rousso
Was the camp totally accessible?
Fay
Totally accessible.
Rousso
But you were still the only kid in a wheelchair?
Fay
I was still the only kid in a wheelchair, yes.
Rousso
Where was the camp?
Fay
It was up in Nanuet. Again, that was like, whoa, up in the country. Now it's gone, by the way. I did go back a few years ago, through my own memory, trying to remember how we got there and everything. There were condominiums there now. [Laughs.]
Rousso
Oh, dear.
Fay
Too bad. Really too bad. But I have lots of pictures and wonderful memories.
Rousso
Did you make some good friends there?
Fay
There again, Harilyn, because there was no continuity, I can't say that I did, no. There were kids I probably talked to on the phone during the year, but--
Rousso
How many years did you go?
Fay
I went five years, from when I was twelve to when I was sixteen. That was the oldest. I couldn't go after that. And then I was in school after that. I was in college when I was seventeen. So it was definitely one of those things that I can say balanced or helped to balance a little all the other stuff, all the bad stuff. It was a very, very important experience. I think it's a great experience for kids, for disabled kids to get away like that. And I'm not so sure even at this point that it's not important to do that with other disabled kids. Obviously, I don't believe that it should be exclusively that way, but I think that an experience with other kids who are disabled is very, very important. There is a sense of--what's the word? There isn't the tension; there isn't the difference. There is the peer connection, so you're able to relate on a different level than with nondisabled kids, and I think that's important.
Rousso
You didn't have any resistance to identifying as disabled? You know how sometimes, some kids say "not me!"
Fay
No, I didn't. No, I didn't have any resistance to that, Harilyn. Right. Although I didn't want to be--it's interesting. I didn't have any problem identifying, but at the same time, I didn't want to be viewed as disabled by others, by nondisabled people. There was a kind of conflict. You know, there was a conflict. On one hand, I felt accepted and I accepted my peers. On the other hand, I wanted acceptance from the nondisabled world
Rousso
That's true, the struggle continues even today.
Fay
Right.
Rousso
How about social things, romantic social things? Did that exist for you?
Fay
Romantic. Those were the stories I made up, Harilyn! [Laughs.]
Rousso
Ah, yes. It was alive and well in your fantasy life.
Fay
Right.
Rousso
I see.
Fay
Actually, there was the young man who lived next door, and he had a terrible family history. His mother was an alcoholic. He was actually in a home for boys. He was away from home, wasn't living with his parents, until he was eighteen. And then he came out of the home. So of course, he had--I was always like the one--you could come--I then set myself up this way, to be the one, the person that people could come and ask for advice and be--
Rousso
The good listener.
Fay
The good listener, right, the good listener. So that is what I became to him. And then it graduated a little bit into more the romantic stuff. We would neck. He was probably the first relationship I could think of that had any sexuality attached to it. And he married my best friend. [Laughs.] That was all right. That was all right.
Rousso
Oh, by the time he did it--
Fay
Yes, we were beyond that. We were beyond that. Really it was okay.
Rousso
He was not disabled?
Fay
He was not disabled, right.
Rousso
How about at camp? Were there any little romances, any opportunities?
Fay
Oh, sure. I had this huge crush on one of the counselors. See, the boys were younger. They didn't have boys the same age. The boys went up to age twelve. They didn't want to deal with all that other stuff, I'm sure. Right now, looking back, I'm sure that's why they did that.
Rousso
Right.
So, of course, we had these crushes on the counselors, and we always talked amongst each other, how cute this one was and whatever. Yes, I had crushes on the counselors. That was it. Nothing beyond that. Nothing beyond that, no.
Rousso
That was as far as it went.
Fay
Yes.
Rousso
How about in terms of learning about sex and sexuality? Were you on your own?
Fay
I probably did it on my own. I think my parents weren't comfortable--when I got my period, my first period, menstrual period, my mother gave me this book that Kotex puts out, Now You Are a Woman. [Laughs.]
Rousso
Yes. I remember, I still have it.
Fay
Oh, God, Harilyn! How funny! [Laughs.] So that's how I learned.
Rousso
I see.
Fay
That was the extent of my mother's ability to deal with that. But I guess I learned from the kids who came over to the house. A lot came from them. And camp, I'm sure.
Rousso
Do you think--I know your parents wanted you to be self-sufficient, but do you think they expected you to find a husband or date or any of that stuff?
Fay
No, I don't think so. I don't think so. No, I really don't think that was an expectation at all. In fact, their concern, I think, was--and this is probably more my father's concern, of course, than my mother's, was that I would somehow be exploited. That I was going to be--
Rousso
Taken advantage of--
Fay
Advantage of, right.
Rousso
By some man.
Fay
Exactly.
Rousso
Did he say that, or did you just pick that up?
Fay
No, I think I picked up on it. He never said that. He never said that, not that I can remember. I don't recall. But it was certainly part of--I know he felt that way. So no, there was no--I mean, I don't know--as I said, a lot of my stuff was fantasy.
Rousso
I think that's particular to most of us who don't have opportunity, we use fantasy.
Fay
Right. Yes.
Obtains medical assisting associate degree, 1957
RoussoTell me a little about junior college or community college. You said that your teacher helped move you along.
Fay
Yes, he really did. He knew about vocational rehab, and he referred me, my mother to them for assistance in college, and he essentially--he believed that I should go to college, even though I failed the history Regents (oh, God!). And Marsha, my friend, Marsha--I had initially wanted to go to a four-year school. I wanted to be a social worker. That's really what I wanted to do.
Rousso
Really?
Fay
Yes, that's what I wanted to do. I wanted to--
Rousso
How did you come to pick that?
Fay
I'm not sure except that I felt, I guess in my experience, that social workers were the people who did, who helped in ways that I wanted to be able to help other people, you know? But my friend, Marsha, who was the one who went to community college--she was the one who went there, went to the community college, and so when I called, or Mom called, and we spoke to Marsha, that was what she had done. The other thing I considered was doing something in the medical area somewhere, somehow, doing something medically related.
Marsha was taking this course in what they call medical assisting. Basically you learned how to be an assistant to a physician in his or her office, so you learn certain procedures and you also learned the office: stenography, typing, medical terminology, all of those things--anatomy and physiology. So you learned those things which could be applied also in a hospital setting.
So we decided that I would go that route, and part of it was that I really wanted to work, and that was the shortest amount of time. It was two years as opposed to four years. That was part of it. The other part of it is that the role model I had was someone who went to the community college, not the four-year college.
So that's what I did, and I got money from Voc Rehab, whatever it was called then.
Rousso
Right. OVR [Office of Vocational Rehabilitation]?
Fay
OVR, DVR [Division of Vocational Rehabilitation] or God knows what. They sponsored--they paid for me through school. They also paid for the transportation from the Bronx to Brooklyn, which was--
Rousso
Is that where the school was?
Fay
Yes. It's actually New York City Tech, right over the Brooklyn Bridge now. Well, it was then too.
Right. Right.
Fay
That's when I learned how to drive.
Rousso
You chose that school because Marsha had gone there?
Fay
It was the only community college. There was one in Westchester, but that one was totally inaccessible. There was--and it still is, actually. It's still there, is what I mean, yes, Westchester Community College. I did go there with my father to check it out, but it was completely inaccessible. I mean, just stairs to get to every--I would be up and down stairs, having to go up and down stairs for everything, so that was out of the question.
But the Brooklyn community college was accessible, except to get in. It had a very high step. It was a converted factory, really, and it had a very high step to get into the building, which they did provide a portable wooden ramp for me to use. And then the rest of it was elevators except for the bathrooms, which had also this huge step, so I couldn't use the bathrooms independently at all. I had to go to the nurse to get the nurse to take me to the bathroom, until I got to know the students, and then--
Rousso
They helped?
Fay
They helped, right, right.
Rousso
Was there any problem getting into the school?
Fay
Academically? No, I had no problem at all getting into the school, and I did very well there. I really did. It was a wonderful--it was good for my self-confidence academically. It helped.
Rousso
Was the degree in medical something?
Fay
It was an associate degree in medical assisting.
Rousso
I see.
Fay
There were liberal arts courses that you had to take, the math and the English and so forth, and I actually made the dean's list each semester--
Rousso
Oh!
Fay
--so that was kind of nice, right.
Rousso
Was it a big transition? It must have been, from home instruction to college.
Fay
It was.
Rousso
Was it a big school?
It was a small school, and that's what was really good, Harilyn. It was a small school. It was made even smaller by the fact that each program had just a certain number of students in that year who were graduating, and so you really got to know all of your fellow students. In retrospect, it was probably the perfect setting for me. If I had to go from home instruction to school, that was probably the best setting to do that in.
I became friendly with the other young women, and guys. We sort of hung together, to some degree.
Rousso
Were there other disabled students?
Fay
No. I was the only disabled student at that time. I was the only student in a wheelchair at that time, in that school.
Rousso
Did that create a barrier?
Fay
No. I don't think I was aware of--I mean, I know--Harilyn, socially I did a lot of denying. I mean, I did a lot of denying. I would have never been able to go into a room if I had focused on the fact that I was the only person in a wheelchair going into this room. I just did a number--God knows--it went away somewhere. I just threw it in the back of my head and plowed through. I mean, of course I was anxious, and I was all those things, but I just kept sort of rolling.
Rousso
Just plow ahead.
Fay
That's right, just plow ahead, exactly, just keep plowing ahead. And so that's what I did in school.
Rousso
That's great.
Fay
That's what I did, just plowed ahead.
Rousso
You did have a community of students.
Fay
Yes. And, oh, let me tell you a funny story. Oh, my God, Harilyn! I decided that I was going to go to school using my braces and crutches. Don't ask me why. Probably because I thought being vertical was going to be better for me in terms of being accepted and whatever. So I had these braces that actually should have been repaired. There was a weak spot in one of the joints. But anyway, the first day I went with my lunch, and a screwdriver because I was afraid that the brace screw thing was going to come loose, and so I had this screwdriver in a paper bag with my sandwich and an apple.
Rousso
A good combination.
Fay
Right, a good combination. So it's lunch break, and, of course, I'm on my own. It's the first day of school. I don't know anybody. I proceed to the lunchroom, and I stand in the doors, looking around, and all of a sudden the stupid bag breaks. And so splattered on the floor now is an apple, a sandwich, and a screwdriver. [Laughs.] Doesn't everybody [bring those things]?
What a conversation piece!
Fay
Oh, I stood there wishing that I could die. I mean, I was so mortified. And a young woman from God knows where she was sitting--she sort of came over and, you know, "Can I help you?" blah, blah, blah. And she was very sweet. We became friendly. We had lunch together that day, and--we never became close friends, but we were friendly, so that was kind of nice.
I stopped going, after the second day, on crutches and braces, it was too much. It was just too much. So I went with the wheelchair. That was that from then on.
Rousso
You needed transportation back and forth? How did that work out for you?
Gains freedom by learning to drive
We were talking about transportation and the difficulties.
Fay
Yes. The transportation--obviously, you weren't the only one being transported, so, you know, you had to adhere to a schedule that suited the transportation company, not you. So I would end up being picked up at something like seven-thirty in the morning, whether I had a class at eight or nine or eleven. It didn't matter. I was picked up at actually earlier than seven-thirty; it was seven. And I would then be picked up from the school at any time. I mean, usually, not any time before five-thirty or six. So it was a very, very long day, and they were always late. I would be waiting forever at the school doorway, waiting.
On cold winter nights, I'd be sitting there waiting for the transportation, just inside the door. I would do my homework, and I'd watch the students come and go. One night, I remember, the president of the school, Dr. [Otto] Klitgord--he came down to leave. Got off the elevator, and he saw me, and he said, "What are you doing here?" And I said, "Well, I'm waiting for my transportation." So he said, "What do you mean?" So I explained to him what that meant. He very nicely, very generously said, "When you're here at this hour," he said, "please feel free to use my office." It was lovely. Wow.
Did I think there was anything unusual about the president of the school saying I could use his office? No. I mean, I guess the fact that I was waiting for transportation, it was probably eight o'clock, and there were very few students left in the school. Of course he would say something like that, but I didn't put all of that together. I thought, in my mind, he was being very nice because it was cold, with the door opening and closing, not that holy shit, I had to go through all that, just to go to school, for Chrissake! You know? I mean, God!
I was--you know, my consciousness--
Well, you were young and it was before the [Disability Rights] Movement
Fay
Right. [Laughs.]
Rousso
So you eventually got a car.
Fay
I eventually, thank God, got a car, yes.
Rousso
Was it hard to learn to drive?
Fay
Oh, no. I couldn't wait to learn to drive, Harilyn. I knew that was my ticket. That was my ticket.
Rousso
Your parents had no hesitation?
Fay
None at all. The moment I turned seventeen and I was old enough to get a junior permit, I got it. I got--Voc Rehab paid for my driving lessons, and I passed on the first go-around. It was more my parents, my father, who had to sort of control his anxiety about my driving from the Bronx to Brooklyn, you know, right off the bat. [Laughs.]
Rousso
Quite a distance.
Fay
Right. But we did okay, and it was fine. That opened up the world. I was then able to stay with the students after class, for example, if they did things or went places--you know, go shopping with the girls. I remember going on a picnic, because I picked up--I ended up picking up one of the students on my way down to--you know, we were in the same classes. I used to pick her up on the way down to school as well. So I had a companion going to school, and it was great. It was like, you know, freedom.
And, of course, in other ways it was, too. Even non-school related. My parents had built a ramp to the house.
Rousso
Thank God.
Fay
Yes, thank God.
Rousso
Thank God! How long did it take them to do it?
Fay
Let's see, they built it just when I started driving, so I was, like, sixteen or seventeen, something like that. Once I started driving--that was, like, the last piece of independence, being able to get in and out of the house.
Rousso
It's hard to believe that it took them so long.
Fay
Yes, I know.
Rousso
You lived in the same house all the time?
Fay
No. I lived in a house that ultimately got the ramp built from when I was probably eleven.
That was a pretty long time.
Fay
Yes, it was a pretty long time. It was a pretty long time. But, you know. So then I was doing things on weekends. I just got in the car and drove.
Rousso
Were you doing it with college friends?
Fay
I was doing it with college friends. I had also become friendly with the woman next door, the young woman next door, and so we would do things on weekends--you know, movies and stuff. There was also a group in the Bronx that--there was a group of disabled people. It was run by this woman whose name is Ruth Curtain. I don't know whatever happened to her.
Rousso
Curtain, like--
Fay
Like curtain, yes, yes. She used to raise money. She was disabled, but she used to raise money for transportation, and she would organize, like, trips to the city [Manhattan] to have dinner out and things like that.
[tape interruption]
Rousso
Did you need any special arrangements to drive?
Fay
I needed hand controls.
Rousso
Were they hard to get?
Fay
The first time Voc Rehab paid to have them installed, so they had a contract, I guess, with somebody out in Long Island someplace, Brakes Inc. [Someone knocks on door.]
[tape interruption]
Fay
Where was I?
Rousso
The hand controls.
Fay
Hand controls, right. And so Voc Rehab had contracted with this Brakes Inc. in Queens somewhere, so that was the first time. Then after that, there was one person, a disabled man, Walter Kroepke, who was out on City Island. Actually, the place still exists. Walter died several years ago. But he had just about cornered the market on hand controls. So I had gone to him to get them from that point on.
So that was pretty much--so it wasn't really an issue of getting the hand controls. The car--the only thing I needed was to be certain that it was a two-door car so I could get my wheelchair in the back of it. Otherwise--that was that.
Rousso
I see.
Fay
Yes.
All right, so you're in community college, you're in New York Community College and you do very well. You said you did very well in all your courses.
Fay
Yes.
Begins employment at Rusk Institute of Physical Medicine and Rehabilitation
RoussoSo when you graduated, what happened next? When did you graduate, first of all?
Fay
I graduated in '57 from there. I actually had a job before graduation.
Rousso
You did?
Fay
Yes.
Rousso
How did that happen?
Fay
I called, and I heard--I know. I went through the placement office at the college. They used to get people who were looking for medical assistants or whatever--you know, whatever the program was. And they used to get these advertisements and stuff, or announcements. There was one for the Rusk Institute, which was then the Institute of Physical Medicine and Rehabilitation. I knew it. I knew of it. I knew where it was. It was rehab, and I thought, "Oh, that sounds pretty good."
So I called, and I arranged for an interview. Oddly enough, when I had this person on the phone, so there would be no surprises, I said, "By the way, I use a wheelchair," I said, "but I certainly hope that that doesn't influence you in terms of my ability to do the job." And so the person on the other end of the phone said, "Oh, no, that won't be an issue." So I said, "Fine." Now, those weren't the exact words, but that was pretty much the sentiment.
Rousso
That was the gist.
Fay
Right. And so I show up for the interview, and here's this woman, sitting in a wheelchair! [Laughs.]
Rousso
Oh, how terrific!
Fay
So that was pretty neat.
Rousso
Who was she?
Fay
Her name was Maggie Cunningham. She was the administrator at the time. She's gone now. Anyway, we went through the interview process and application and whatever, and I got the job, so I really got the first job that I interviewed for, so I was very, very lucky. Of course, I had chosen an area that would be more accepting or less--certainly would
Rousso
What exactly was the job?
Fay
I worked in the department that then combined all of the services--the vocational services, the psychological services, social services for the entire rehab, for the institute. So I really worked for all of those disciplines while I worked in that department.
Rousso
Were you doing mainly clerical?
Fay
I was doing clerical stuff. I was taking dictation, I was typing reports, I was typing patient reports, correspondence. I did different things, depending on who I worked for in the department.
Rousso
Were they doctors? Were you working for doctors?
Fay
No, I was working for social workers, psychologists, and vocational counselors. Basically those were the three disciplines. That was a big adjustment for me as well, going to work, leaving college--you know, graduating from college and now going into work.
Rousso
Tell me again the date.
Fay
Nineteen fifty-seven. Actually, when I got the job, I asked for the day off to graduate, because I hadn't graduated yet, so they knew I was going to. But when I started to work, I felt extremely isolated and again--I mean, I wasn't a patient there; I was a staff member, and there weren't [other disabled staff]--except for Maggie Cunningham, who wasn't the most friendly person, I gotta tell you--she really wasn't. And I did not end up liking her very much, and she probably didn't end up liking me very much, either. But, Harilyn, I ate lunch in the bathroom.
Rousso
Why?
Fay
The first few days.
Rousso
Why?
Fay
I was terrified. I just felt extremely vulnerable.
Rousso
I know that feeling.
Fay
Yes. And lunch was a candy bar. I mean, I would get a candy bar, and I would go into the bathroom and eat it. Oy, God!
Rousso
Where did most people eat?
Fay
There was a cafeteria, a lunchroom.
Rousso
But it was too hard psychologically.
I couldn't do it. Yes, I couldn't do it. It was like going there, get on line, order food--I mean, this all sounds ridiculous--
Rousso
Oh, no, it doesn't!
Fay
All of this Harilyn--I mean--
Rousso
Well, you never had done it.
Fay
That's right. I'd never done it, exactly.
Rousso
How would you carry the tray? All of that you never had done.
Fay
All of that, all of the above, right. So it just--I just went into--I mean, I didn't want to not eat or not leave for lunch, so I'd leave and get a candy bar and eat in the bathroom. Oh, God. So that lasted for a while, until I got to know the other secretaries better. And then we started eating together. Of course, I ended up working at Rusk for twenty-six years or something, so obviously it was a good experience. But I worked my way from that to working as an administrative assistant to the clinical director. I often refer to that whole period of my life as growing up. I grew up at the institute, literally.
Rousso
All your positions--you were in administrative positions?
Fay
Right, right. Yes. And each of them was--it was progressively--you know, had more responsibility and more responsibility until I got, in 1962, when I started to work for the clinical director, who was a physician. That was a high visibility position. It was in the executive suite.
Rousso
Who was he?
Fay
Edward Lowman, L-o-w-m-a-n. He was just incredible. He was a very tough taskmaster in the sense that his expectations were high. I mean, he was not one to ignore errors. Socially, he was very adept. He's southern and had all of the charm of a southerner, but also had the--he was very compulsive about things. You had to look right. He dressed beautifully, and he expected that from the people who worked with him.
Rousso
So you had to buy a new wardrobe.
Fay
I had to buy a new wardrobe, exactly. I had to buy a new wardrobe. But he was a very generous person. I learned a tremendous amount from him, administratively. He was an excellent administrator as well as a very, very good physician. So I learned a lot from him. Once he began to trust me and I guess I lived up to his expectations, which was also part of his personality, he became steadfastly loyal. I mean, if you were in his team, so to speak, you had his loyalty forever: right, wrong or indifferent. I mean, you had to earn it, but you had it once you earned it. There was never any question about that, so that was very nice. It was a nice feeling.
Rousso
How long did you continue to work with him until you left?
I worked with him--no, he became ill, and he actually retired. We became friends, and I still saw him afterwards. He would periodically come into the institute, but I worked then for his associate--
[tape interruption]
Rousso
We're continuing to talk about your job, and you were saying that the man you worked for was very loyal.
Fay
Right, right. And I ended up working for his assistant or his associate, who was younger. He was my age. He was a contemporary, and it was a completely different relationship with him, which was also very important because it was more of a--how can I put this? He gave me much more independence in terms of my working for him. I ended up managing the secretarial staff. I handled things that he would turn over to me, independent of him. So it was kind of like the basis--I learned all of this, having worked for Ed Lowman, but now that Ed Lowman had retired and Heiner Sell took over this responsibility, I was able to do a lot of it on my own.
Rousso
You had a lot of autonomy.
Fay
Right, so I had a lot of autonomy, and that was, again, another level of learning and feeling good about what I was able to do.
Rousso
When did Ed leave?
Fay
He left in about '78. After 1978 he wasn't there very often, and he was practically--you know, he'd come in but more as sort of consultant with Heiner and whatever.
Then a very tragic and unexpected event: Heiner developed cancer at forty-two.
Rousso
Heiner was the one you worked for?
Fay
The physician who was--right. And he really was--he had an incredible career in front of him. He really did. We worked very well together, and I was sure that I was going to be going wherever he went. We were going to be a team. He ended up dying, actually, in 1981.
Rousso
How sad.
Fay
Terrible. So that was kind of the end of my--although I worked for another probably year and a half, two years at the institute, it was really a big turning point for me. I was ready to leave there at that point.
Rousso
Right.
Fay
In 1983, the City of Yonkers--
Rousso
You're going to talk about the independent living center there?
Fay
Right.
Before you go there, we need to backtrack and talk more about how you got in that direction.
Fay
Okay.
Early activist roots with National Paraplegia Foundation, 1970
RoussoWe've kind of been talking about your work, but I was wondering about the transformation of you into an activist.
Fay
Right, okay. I suppose it was while I was working at the institute. I really did have a lot of--I don't know how to say it. Well, it wasn't exactly autonomy, but I was there for so many years, and I knew a lot of people, and I guess I had a certain amount of credibility, maybe, with people there. In 1972--I don't remember--think it was 1972, we applied for--the man I mentioned earlier, Ed Lowman, wrote the grant for the New York Model Spinal Cord Injury Program, Regional Model Spinal Cord Injury Program. This was when the federal government had decided to allocate funds for spinal cord injury, for regions to develop a program from the moment of injury until death. This was to look at how to move people along and have the best outcomes.
We were invited--that is, the institute was invited to apply for the grant, almost with the understanding that we would get it if we applied for it. And so it was a very last-minute thing. I remember working all weekend with Ed Lowman on putting it together. We did, got it out, and we got the grant.
Part of that grant had to do with advocacy. It had to do with the community. It was one of the first ones that anything related to rehab really dealt with what happens to people when they leave that institution. I had been involved, through friends, with something called the Architectural Barriers Committee, earlier than that, in the early seventies.
Rousso
Where? In New York City?
Fay
In New York City, yes. The meetings were held at the Bulova School in Queens. It was something I went to--I went to a meeting every month or maybe a little more frequently than that. We talked about just that. It was architectural barriers, and things like curb cuts or whatever else. It was Julie Goldberg and Julie Shaw who were in that organization. I don't recall any others. There may have been, but I don't recall any others. It would be almost like a social thing, when we'd meet--oh, and Bobbi Wailes was also there. I'm sorry.
When we met, it would be a little bit social, a little bit business. Their wives would be there. We would get together and have dinner, whatever. Lou [her husband] would come with me as well. So it was partially social as well as business. But I enjoyed it. I enjoyed learning about whatever the laws or regulations or whatever was out there that required the city to do certain things, to make buildings accessible, et cetera. It was like--this is a pretty good thing.
So when we got into the spinal cord regional center, I was already thinking in terms of advocacy. I also was invited to be on the board of the National Rehabilitation Association, as their--I don't know what they called it then, but it was a consumer representative or something like that.
Rousso
How did they find you?
Fay
Again, I worked at the institute, and it was a high profile position, so people saw me and knew I was there and asked me to be--they met there as well. That chapter met at Rusk. And so I ended up going on their board. As a result of that, I would be involved in presenting testimony on behalf of NRA, National Rehab Association, not the [National] Rifle [Association]. I would end up--like, I would write the testimony for certain things. I'm trying to remember now. Well, they actually paid for me to go to Washington one time for airline accessibility. We prepared the testimony, and I went down there on their behalf and gave it. It was sort of the seedlings, if you will, of what was to come.
So I had those experiences when we got the spinal cord grant.
Rousso
Do you remember when you were on the board of NRA?
Fay
Yes.
Rousso
And when you were on the Architectural Barriers? Just to give it a context.
Fay
I'll try. I don't know if I know this specifically, but the NRA board--I have to find an old résumé. The NRA board, I think was--I would say probably 1972.
Rousso
Okay.
Fay
Okay? The Architectural [Barriers Committee]--I would say around the same time, '71, ABC, something like that, '72.
Rousso
The same.
Fay
Yes, '71, '72. Seventy-one. Okay, it was '70, '71, and I'll tell you--in my mind now, I remember. I remember conversations, and we lived in the apartment then. We bought the house. We moved into the house in '71, so I would say late '70, '71.
Rousso
When did you get the grant?
Fay
The grant was [pause] '73, maybe, something like that. So there were a few years before that. When we got the grant, one of the positions of the grant was community liaison. That position was filled by Roxanne Brody, who is now Roxanne Offner, who you may remember.
Rousso
Yes, sure.
Fay
So Roxanne and I became friendly. We decided to--because Roxanne was a community person, a community organizer and stuff. She decided that it might be a good idea--we both decided it might be a good idea to establish--and this was still really under the
Rousso
Had you had any contact with the National Paraplegia Foundation to then?
Fay
No. No, I hadn't. So we got the information. I sent away to Chicago, to the national office, got information about developing a chapter, creating a chapter, and we obviously used the people who had been spinal cord injured patients, people who were part of the project, people we knew, whatever, and friends I had, to create this organization.
Rousso
Was there any particular reason you chose NPF, as opposed to some other organization?
Fay
Only that it was there and I was being asked to participate in this now by the staff of the project, especially Roxanne. Obviously, her job was to work on the spinal cord injury piece of it.
Rousso
Oh, okay.
Fay
That's how I got involved in that, as opposed to maybe DIA [Disabled in Action] or somewhere else. That experience gave me a lot of information as well, because it was an education. I learned how to get people together around a common issue and then the nitty-gritty things, like how to incorporate, how to set up a group, bylaws, the whole business of the structure of an organization.
Rousso
You did all that?
Fay
Right.
Rousso
You were involved--
Fay
For the chapter, right, for the NPF chapter.
You learned a lot about how to organize.
Fay
I did, about the whole organizational beast. And then I also got--which was the bonus piece, is that I got to go to the national meetings. There I learned even more and was ultimately elected to the national board. That was also kind of nice. It was a different perspective.
Interestingly enough, that organization tried to combine goals that were almost--
Rousso
Incompatible.
Fay
Incompatible, exactly. You remember that.
Rousso
I read about it.
Curing, there's a big research component for curing, raise money for the cure for spinal cord injury. Caring, which had to do, really, with the treatment of spinal cord injury, the interventions and stuff. Caring, cure--whatever the other one was.
Rousso
Research?
Fay
Cure was the research. I forgot what the third C was, but there was one. Anyway, then there was the advocacy. Care, Cure, Community, I think, which was the advocacy piece of it. That was the barriers, the airlines, all kinds of things that people then were considering part of what changes needed to be made out there for people who had spinal cord injuries to be integrated into the community.
We were constantly trying to integrate these goals, which were difficult. We had a national board. It wasn't so difficult in the local chapters because the local chapters were much more--at least most of them; some of them weren't, but most of them were much more concerned about local issues of access, basically.
Rousso
It was more focused on the community.
Fay
Right.
Rousso
The advocacy.
Fay
Exactly. But the national was not. The national was really more focused on the research because I think that was the easiest way to raise money.
Rousso
Good for fund-raising.
Fay
Exactly, exactly. There were parents of spinal cord injured people on the board, there were providers on the board, and then there were people like me, who were presidents of chapters. So there would be some lively board discussions.
Rousso
Even then, you felt that contradiction between cure and advocacy.
Fay
Yes.
Rousso
When I read it, I had that reaction, but, you know, I didn't know how it would feel in the 1970s, whether it would be so striking.
Fay
It was. It was. It was difficult. I mean, it was very clear to me that on one hand, I'm sort of identifying issues that are discriminatory, you know, matters; and on the other hand, I'm saying, "Really the only way to be is cure this and have it be all right, have everybody not have a disability." But, "Huh?" Well, so, yes, it was a striking--
Rousso
Contradiction.
Fay
Contradiction, definitely, definitely. But nevertheless, it offered the opportunity locally to do stuff.
Rousso
Can you paint the picture in terms of locally, what else was in the disability landscape?
Yes. Okay, there was the chapter. There was DIA, Disabled in Action, and Judy, Judy Heumann, and Denise McQuade, I guess, in those days.
Rousso
Did you know much about DIA at that time?
Fay
Yes.
Rousso
How did you learn about it?
Fay
I learned about it because they were very--the first time I recall learning about it was they had come actually to speak to the ABC, the Architectural Barriers Committee, about--what the hell was it now? It was some position that we had taken that was--or we didn't take that we should have taken, and it was like--you know, just as today, Harilyn, then as well, there were people who were identified with different organizations, but it was the same people. So while Judy was perhaps president then of DIA or she was involved in DIA, she was also the president of SDS, Students or the Society of Students--something Disability [Society of Disabled Students?]. I know it was SDS, the militant piece of the school, the disabled young people in the schools.
Anyway, so she came to speak to us basically about not being aggressive enough and we need to be doing this and need to be doing that, and making us all feel like we were 200 years old and whatever, you know, and so conservative. And so for me, that was sort of--okay, that's another part of the spectrum. I wasn't there. I'm not going to tell you that I was there because I wasn't. But okay--
Rousso
Did it sound too radical to you, or a little too demanding?
Fay
It was a little on the radical side to me, but I respected it. The thing is that I really saw Judy and whoever it was she came with that night as important. I wasn't connected to it personally at that point, but I certainly saw it as, "Wow, that is important. It's important for people to be out there and saying things like that and not trying to please and change at the same time." So that was kind of--
All right. Then there was DIA, the student groups, So Fed Up, which was another student group that Pat Figueroa and Denise--
Rousso
I had heard about that.
Fay
--were involved with.
Rousso
Was it at Brooklyn College?
Fay
Yes, that's right, it was Brooklyn. There was EPVA [Eastern Paralyzed Veterans of America]. While they were really outside of the coalition piece, they were still a force to be reckoned with. And then there were parent groups. There was a spina bifida parent group. And basically they were the ones that were involved with us, mostly, parents of kids with spina bifida.
Rousso
They were involved when you started the--
They were involved when we did things in coalition--you know, like all these groups?
Rousso
Was that later when you did that?
Fay
Yes, it was a little later. It was a little later, yes.
Rousso
When you first started--
Fay
When I first started the chapter--forget parent groups for the moment. Basically, that was pretty much it.
Rousso
But later on, when you started to build a coalition, the parent groups were very involved with it.
Fay
Not very. It was one semi-involved. Because there was a group--oh, God; it might be in the stuff that I sent to you, Harilyn, but it was Kurt Shamberg and Sol Wieder. Both of these men were involved in organizations that existed--oh, God, it was probably fifties and sixties. Well, Kurt Shamberg was involved in something called PRIDE. It was an acronym, but I don't remember the acronym now.
Sol Wieder was involved in a group of people who were older--then, older--and their primary role was to address employment discrimination. That's what they did, by and large. So there was representation from groups that had gone before us. There was the acknowledgement that these people had done stuff that made it possible for us, even, to--
Rousso
Had you known about them before you started?
Fay
No.
Rousso
It was after. So when--
Fay
It just kind of started to happen. Perhaps it was Julie Goldberg or Julie Shaw who knew Sol Wieder and somebody in DIA knew Kurt Shamberg.
Rousso
Right, right. It was the networks.
Fay
Yes, the network stuff. Right, exactly. I was always, from the very beginning, always saw the value of working with other people, with other groups. I always felt there was value in working together. First of all, I liked it. It felt good. It felt better. I always felt supported if I could find somebody who believed what I believed. I wanted to be able to garner as much strength as possible from numbers and other people's ideas and thinking and whatever. So organizing was something I enjoyed doing.
Gasoline crisis demonstration a watershed, 1973
RoussoHow do you think you got that vision, the value of coalitions? Not everyone has it.
I'm not sure. You know, I know, Harilyn, there are what they call--what do they call them, watershed moments?
Rousso
Yes.
Fay
One of them was when we demonstrated for the gasoline crisis, which of course was a major, major event.
Rousso
When was that?
Fay
That was in 1974, I believe. And that brought every group in the city together, and it was a major demonstration, the first one that I was aware of, and probably the largest up to that point, certainly disability related. It included the ambulette people. I'm talking now other than the disabled people.
Rousso
Right.
Fay
It included ambulette people, because they were not getting the gasoline--not waivers--exemptions. Ambulances did, but they didn't. Also the providers, like the UCPs [United Cerebral Palsy agencies] that have vans. So it brought in a lot of people that ordinarily would not be working together.
Rousso
How did it get organized?
Fay
It got organized because of the gasoline crisis.
Rousso
For the record, talk a little bit about that.
Fay
Okay. There was a gasoline crisis. The way in which it was being handled by the state was that various groups, like salesmen and physicians, were being exempt from any restrictions, and the restrictions were that you could buy gas depending on your license plate, on even days or whatever, and then you had to be in a carpool. There were other kinds of restrictions, which we believed were totally discriminatory from our point of view because we had no option, no alternative to automobiles at that point. To be putting restrictions on us was outrageous.
Everyone--because it literally affected every disabled person in one way or another--people started to come together for one cause, so they started really to coalesce. I'm not sure whether it was even thought about in terms of this is a coalition, but it ended up definitely being just that, because this issue affected various people, in different ways, maybe, but it got to everybody.
Rousso
Do you remember who organized this meeting, or where it was held?
Fay
I do. I remember calling a meeting or having a meeting with DIA. I remember Julie Goldberg and Julie Shaw and myself, and Judy and I actually even remember Eunice Fiorito was the director, I'm pretty sure, of the Mayor's Office [for the Handicapped] at that point.
Rousso
Right.
I think there were representatives from her office at the meeting. So we pulled together a meeting at Rusk. I remember where.
Rousso
So you did it.
Fay
Yes. Right.
Rousso
Bravo!
Fay
Right. It was me with Julie and all these people.
Rousso
Right.
Fay
We pulled this together and started to plan for how we were going to address this. We had various strategies. We were going to appeal to the governor with telegrams and letters and phone calls, to get a meeting with him, and if that didn't work, obviously we were going to take to the streets. We were going to demonstrate.
So we did do all those things first and got nowhere, just promises of, "Yeah, we'll look into it" kind of things, and nothing was happening, and people were still really having difficulty with travel. So we came together again, at the institute. This was all--it's amazing. Little did Howard Rusk know what was being organized under his roof!
Rousso
He didn't know all that was happening.
Fay
Right. We got together, and we planned out this demonstration: where, who would be involved, how we would recruit. People were there to get the permits and all of that.
Rousso
Were there any models for that in New York City, as far as you know?
Fay
That's the first time I can remember anything, Harilyn. I don't know that there were models for it. No, I don't think so. I really don't. We had the signs, we knew where we were going. We were going to block traffic on Sixth Avenue because it was at the governor's office--you know, New York [City] office, and so we were going to block traffic on Sixth Avenue. We had these signs. We were going to march in the streets and on the sidewalks.
It was--when I started talking about watershed stuff--it was when I was at that demonstration and I recall somebody who worked at the institute and that I worked with for a while, and I met him. He was there. He came to support. He was the vocational rehab guy. He came to support the demonstration. I met him on the street, on the sidewalk, and he said, "This is quite a crowd." And he said, "I haven't don't anything like this in such a long time."
Something clicked in me, and I thought, "This is so incredibly exciting." I mean, I was on such a high, such a high. It was wonderful. I mean, I felt part of something that was electrical, something that was just--
Rousso
Wonderful.
--wonderful. It was just--yes. I never felt anything like that before. I was very, very taken with that, for the whole day. And we ended up getting an appointment--we ended up going to the governor's office. Not with him but with somebody else. Five of us, spokespeople.
Rousso
Do you remember who else?
Fay
Yes, I think I do.
Rousso
Tell me when it was.
Fay
We got a meeting that day. We went up there, because we weren't leaving until they gave us a meeting.
Rousso
So this was 1973?
Fay
Right, right. And we went to the governor's office, and it was, let's see, Julie Goldberg, Julie Shaw, Fred Francis was the other person, and myself, and there may have been one other person, and I can't remember, can't recall. We basically said that we wanted these exemptions and we wanted to meet with the governor or whoever he designates, and this has got to happen soon, and blah, blah.
So we got a meeting in Albany. And then--
Rousso
Did you go to Albany?
Fay
We went to Albany. We took a van full of us, and it was a couple of vans, I guess. It was probably around the same number, the same people who were in the governor's office that day, maybe one or two others that went. Yes, there were one or two others. Ambulette people were represented. I remember that. That was very exciting. That was my first time. But, Harilyn, another thing I remember about that day was having an enormous migraine. I had a migraine headache that was incredible. I think that the tension of that and all of a sudden somebody was--I mean, actually the power.
Rousso
The power.
Fay
I made something happen. I was part of making something happen? You know, whoa! My, God. What was that all about. It was just--so that was the beginning for me. That was a watershed.
Rousso
Did it have an impact?
Fay
It did. We got the exemptions, yes. So it was successful, which was that much more exhilarating. Yes, it was successful.
Rousso
In the New York City demonstrations, do you remember how many people approximately were there?
Fay
That was the largest one that I can recall. I'd say there were probably upwards of five hundred.
Really?
Fay
Oh, yes, Harilyn, it was a lot of people. Harilyn, Sixth Avenue was blocked for blocks, and several of the cross streets were as well. There were lots of people there, lots of people. And it was all day.
Rousso
It was all day.
Fay
It was, like, the better part of the day, until we got that meeting.
Rousso
Wow! Fantastic!
Fay
Yes.
Rousso
So that did it for you, huh?
Fay
That was a part of it.
Identifies as a person with a disability, 1974
FayThe other watershed piece had to do with really identifying as a person with a disability. I mean, making that step, taking that step, totally, and not be on this side for this and that side for that, where it became more important for me to be seen as a person with a disability and to now fight to create the equality of opportunity for me and others that I felt was discriminatory in the past. In the past, I didn't have that frame of reference. Things were not in that context. It became more important for me to do that, to be that and do that, than it was to have the acceptance of the nondisabled world, and the approval.
Rousso
Was it through that event?
Fay
It was through another event. The Mayor's Office for People with Disabilities was being threatened--it's always being threatened--you know, with cutting, whatever. The best director of that office ever was Eunice Fiorito. I mean, she just got it. You knew Eunice.
Rousso
Yes.
Fay
We, the community, got together and testified at hearings on behalf of the office. I remember the testimony I wrote, which really--it's probably somewhere in what I sent it to you. But it really had to do with--and I remember saying this. It was very simple for me then, but when I got up in front of people and read it, there was suddenly--it was an acknowledgement on my part. Now, it didn't happen suddenly, but it was that moment of--Aha! An aha moment. And it really was this whole consciousness, growth of consciousness.
I remember comparing the office and the staffing of the office with the consciousness of people with disability at the time the office was developed, but that was no longer
Rousso
Uh-huh.
Fay
There was a sense of total freedom. This is who I am, and I'm proud of who I am, and I want to be there. (I have goose bumps.)
Rousso
Wonderful.
Fay
That was the turning point. That was the turning point.
Rousso
Was that after--
Fay
It was after the gasoline crisis.
Rousso
Where were you speaking?
Fay
Oh, it was actually--the hearings were in city hall, but city hall was inaccessible.
Rousso
Right.
Fay
And so they set up this alternate site for us to present testimony, using a microphone and I think maybe a video hookup of some kind, so that they could hear us in city hall.
Rousso
Was the issue whether or not the office should exist--
Fay
It was--
Rousso
--or whether it should have a disabled person as its director?
Fay
The issue was to support funding for it. They were going to be cutting the funding, and so we were there to--yes, symbolically, they were doing this to the office, but symbolically they were also doing this to us. They were saying that we were not important enough. So that's why we were there.
Then there was this huge party back at the office. Eunice ordered pizza and I don't know what all else. And we all had a great time. We just came back and had this wonderful time
But that was definitely a watershed moment. From that point on, there was no doubt in my mind where I wanted to be and almost needed to be, really. And so it was nonstop eat, sleep, everything else. You know, whatever was out there, whatever the issues were.
Rousso
Do you remember writing that speech? Was it very hard or meaningful to craft it?
Fay
To craft the what?
The speech.
Fay
No. I didn't know it would quite have the impact that it had, though.
Rousso
I see.
Fay
Yes. It was one page. I remember vaguely remember writing it, but it wasn't until I actually said it in that setting with everybody that I felt it.Yes, it's interesting. But it was just such an exciting time, Harilyn.
Rousso
It sounds it. Was this still 1973?
Fay
This might have been '74. This was probably around '74.
Rousso
Who had organized the disabled people? Was that again something that you had organized?
Fay
No, I think we were all invited to present testimony. I think that's how that came about. On behalf of the [mayor's] office. So those of us who--most people responded.
Rousso
Do you remember who else spoke?
Fay
I hate to say it. No, I don't. I actually don't remember.
Rousso
You know those powerful moments in our lives, the most important thing is our own experience.
Fay
Yes, I know. I don't remember anyone else who spoke. I can remember a few people there. I remember some people there, but I don't remember who else spoke.
Rousso
And, again, it had its desired impact?
Fay
Yes.
Rousso
They didn't cut the office.
Fay
They didn't cut the office, so, again, it had its desired effect. Yes, all of those things were important. Having success on top of success was very important. The seventies was quite a decade for us. It really, really was.
Rousso
Tell me a little bit about some of the--you mentioned some of the key activities. I know another key activity had to do with the human rights law, adding the disability piece. I know the governor, I believe was Governor [Malcolm] Wilson had not signed it.
Fay
That's right.
Rousso
Tell me more about that incident, as much as you can recall.
Fay
Okay. Yes. All of these things in a sense evolved for me in the seventies, in terms of going from having a perception of myself and in general having a perception of people
It meant in some ways that anger was not condoned, anger was not a good thing. Anger was a bad thing. You always did what others asked you to do. And there was never a sense of outrage at not having the same opportunities as other people. I think the moments that I discussed or talked about before--the demonstration, the gasoline demonstration, and the speech for the mayor's office--for me, those were kind of moments that remained in my consciousness in relation to my personal evolution from that person who did something with her anger but certainly didn't channel it or direct it anywhere, to the person who felt that I did have a right to more than what society has deemed me eligible for. It wasn't a question of services; it was a question of living, of working, of enjoying my life--
More on watershed moments and anger
[Editor's note: The following section is from a fourth interview session conducted on October 16, 2002 in order to recapture material lost due to inadvertent tape erasure.]
RoussoWhat we were talking about were some watershed moments [noise due to movement near microphone]; one was the gas--
Fay
The gasoline crisis?
Rousso
The gas crisis, and then you were describing to me the experience with the Mayor's Office for People with Disabilities, and you talked about giving that speech and then all at once you had a sense--you knew which camp you were in and what your identity was.
Fay
Right, right. Yes, that's always a very good memory for me. We were presenting testimony for what was then the New York City Office for the Handicapped, I guess--Mayor's Office for the Handicapped. It was to advocate for them to have more staff or to just exist, because they were thinking of cutting it. We were presenting testimony to the city council. We could not get into city hall, and so we were in another location with a hookup to city hall.
There was a group of us in this very small space, and it was kind of dark, and we were, each of us, presenting testimony on behalf of whatever organization, and so it came my time, and I had written the testimony, and I got up and started to present this. And as I was talking, I really, for the first time, when I said--and somewhere, I think, Harilyn, I did give you a copy of that--
Rousso
Right.
--of that testimony. But it was really--it spoke to self-determination, and it would no longer be acceptable for others to speak for us, that we knew what was best for us. As I kept saying "us" and talking about making decisions for ourselves and et cetera, I really, for the first time, actually--it was like taking a step over a line for me. It was like, "Okay, I am a person with a disability, and that identity, right now, feels real good." There was a sense of--there was a sense of pride, a sense of pride in what we were doing, not just at that moment but what we had been able to accomplish as individuals and as a community.
It went a long way for me, in terms of my own consciousness. It really, really did. Everything else fell into place after that. Things fell into place after that, in relation to my personal growth.
Rousso
One of the things you had started to mention when you were telling the story was about anger. For much of your life until then, anger was really very contained.
Fay
Right.
Rousso
Or not--
Fay
Right. Very, very contained. As a matter of fact--well, I was female, disabled, from an Italian background. And the times, the time that I grew up, anger was not something that you expressed, that a woman particularly didn't express, and a disabled person certainly didn't because we were--as a disabled kid, I was--if anything, the message was: Be grateful for all of this whatever you're getting: services, the teacher coming to your house. You know, whatever it was, just say, "Thank you, thank you, thank you."
Phyllis [Rubenfeld] and I used to later on kind of laugh about that. It was, like, "Please, please. Thank you, thank you. Please, please. Thank you, thank you." Anger--whether I felt it or not; of course I felt it--was never anything that I felt entitled to have, let alone express. But after that watershed moment and even-well, that was a gradual thing, the anger-but certainly at that watershed moment, I suddenly--I mean, from that point on, entitlement was part of my being and the realization that I never had a level playing field, and that this was discrimination.
And it was outside of me. It wasn't inside of me, it was outside of me. That had a very big impact on me. I found a place for the anger, and it was an okay place. It was an expected place. You know what I mean? If I was in a demonstration, anger was part of what was expected.
Rousso
Right.
Fay
And on an individual basis, I would begin to, in public places, where there was no access, or restaurants that would look to shove me in a corner--those things were not acceptable anymore. I was able to express that wherever I was.
Rousso
Right, so the norm kind of changed.
Fay
Exactly. Yes, that's a very good way to put it. The norm did change, whereas prior to that, so I'd sit in the corner. I'd feel like shit, but I would sit in the corner anyway. Well,
Rousso
Yes.
Fay
It really, really made a big difference.
Rousso
Activism was good for your health.
Fay
Absolutely.
Rousso
We could make a bumper sticker.
Fay
I recommend it! I recommend it. [Laughs.]
Human rights law advocacy and civil rights
RoussoAll right. Another thing we had started to talk about was the New York State Human Rights Law, which I know, again, you played an important role in.
Fay
Yes. That law was in danger of not being signed by the then Governor Wilson.We were--when I say "we," the community in the city was basically Disabled in Action, Eastern Paralyzed Veterans of America [PVA], the disabled students--you know, So Fed Up, the disabled student groups, and NPF obviously, the chapter--were meeting over how to move this thing along.
There were all kinds of attempts at getting a meeting with the Governor or anybody in his office. Of course, it wasn't working.
Rousso
Now, the legislature had passed it.
Fay
The legislature had passed it, exactly.
Rousso
The issue was that he was not signing it.
Fay
Exactly.
Rousso
And there was a deadline.
Fay
Right. If he didn't sign it within--I can't remember now--two weeks or something like that, it would have been pocket vetoed, which essentially it's dead, you know. So we were moved to do something. Once again, we decided to take to the streets. We organized a demonstration to get a meeting with the governor. This was in his New York office. That was Sixth Avenue, I guess, and 50-something Street. And so we did. We blocked the traffic on Sixth Avenue.
There was a group of us who were pre-selected to be spokespeople. We hung around, more or less, by the building so that if there was any communication, we would be there, but--and the news media was there, TV, Channel 7 news. It was great. We got a lot of coverage on that. And sure enough, one of the governor's aides eventually came down and said, "All right, you can have a meeting with Blah-blah." It wasn't the governor, but it was someone in his office.
So five of us went up there, and we spoke to him and told this person what we were there for, what we expected, et cetera, et cetera, and all kinds of assurances, and--
Rousso
Now, the human rights law was going to include disability.
Fay
That's exactly right. It had already--the categories, whatever age, religion, color, blah, blah. And what it was was the existing New York State Human Rights Law. All that we did--I mean, all that we did; it was a lot--was to include people with disabilities in that law, so that we would be protected.
Rousso
It was an extension of an existing law.
Fay
Exactly, so that we would be covered in terms of discrimination. And that got passed. He signed it. That was another real accomplishment. And with each of these accomplishments, there was such an incredible sense of empowerment. It's like nothing succeeds like success, you know? It gave us the impetus to keep going. It was fantastic. It really was.
Rousso
Did you have a sense of why he had resisted signing it, what the issues were?
Fay
It's hard for me to go back--
Rousso
Was it money?
Fay
I think, if I recall correctly, the Chamber of Commerce was the strongest group opposing this. Businesses felt that they were going to have to do God knows what to accommodate people with disabilities. It boils down to money. I mean, that's what it always comes down to, sooner or later. But I think that was the major opposition. And I frankly don't think that he thought that this would--that we were either organized enough or aggressive or assertive enough to publicize the issue as we did and to make it an issue, period.
Rousso
Had you been involved in lobbying the legislature to get it passed?
Fay
Yes, yes, yes. Yes, exactly. We did lobby the legislature, although I must say that there were a couple of people--I don't remember them--I know Senator [John] Flynn was one of them because he was up where I lived. But there was a lot of support in the legislature.
Rousso
So you didn't have to work too hard.
Fay
No, it was not as big a job as getting the governor to sign it. That was the big push. But we did it.
You did it.
Fay
Yep. We did it.
Rousso
You mentioned a million accomplishments during this period. What stands out was the gasoline crisis, the Mayor's Office--pushing for money, the human rights law. Was there anything else that jumps out at you as things that you were involved with during this time?
Fay
I'm trying to think. You know, there were things that I was involved in at work. I think there was just a general sense of growth of consciousness, just in general, in terms of people with disabilities and civil rights, kind of looking at the issues that had been seen forever, never in the context of civil rights. They were always looked at in terms of services. You may have advocated for more services for somebody or a better system for getting them--whatever, the medical model, and look, and still is, to a large degree. But I think that time was the beginning of us seeing ourselves differently and society at large viewing us differently.
So there were things that, so this affected things kind of everywhere. I was working at the Rusk Institute for Rehab Medicine, so certainly my involvement there also changed. I had a professional position there, an employment position, but at the same time, I was a person with a disability. I was being asked to almost be a resource, a community resource for the patients who were going through their rehab there, inpatients, outpatients.
Staff began to ask me to make presentations. So certainly it was a combination of my own growth as well as what was going on in general. I was in a position, as I said, at a rehab center, a prominent rehab center that was clearly also beginning to look at things a little differently. Suddenly we have to be concerned about what happens when a person leaves the rehab center, so they're starting to incorporate that into a rehabilitation perspective for giving patients.
Also--again, the issue of anger and entitlement and whatever. A group of us who were disabled were given parking at a certain location that was accessible to us, and that was threatened to be taken away.
Rousso
At Rusk?
Fay
At Rusk, yes. That was threatened to be taken away, and they were going to put something else there or whatever. I remember being livid, and there was one other person, Carr Massi, who worked there also. The two of us got together, and given what we were involved with in terms of disability rights, we couldn't just say: Okay, it was okay for them to take these parking spaces away, even though these were our employers.
So we organized the five people throughout the medical center who parked there--five or six; I don't remember now. We met with the director of human resources, and we did a whole whatever, up to--I came across this also when I was looking for the materials I sent to you--up to the president of NYU, Brademas, at the time. I mean, we sent memos
Rousso
So that's another victory.
Fay
Another victory. So those were things that were certainly on a lesser scale, but they were there, kind of like an example of what was happening not just with me but with others who were involved with the movement in terms of their lives.
Rousso
In terms of your work with NPF, I know you were also involved on the national level for a while.
Fay
Yes.Yes. That was an interesting experience. I was on the board of the National Paraplegia Foundation, and much more than the chapters, the national organization really had three focuses. One was Cure, Care--CCC. I always forget the other one.
Rousso
Community?
Fay
No. I wish it were. But it was sort of like treatment, research, and advocacy. The chapters really were the ones that did the advocacy, on the local level. The national organization--it was almost being a little schizophrenic, because I would be so involved in the chapter, the New York chapter, and then I'd go to national meetings, and I'd be sitting on the board that was talking about raising money for research to cure spinal cord injury. That was really, I would say, 75 percent of what we dealt with on the national level.
Rousso
Raising money?
Fay
Was raising money for cure. There were people on the board who were both spinal cord injured and there were a couple of parents of young people with spinal cord injuries on the board, and then there were the one or two--there was one other person on the board that I know that we supported one another in whatever--how can I put it--in the 25 percent that was left of advocacy or disability rights stuff.
Rousso
How big was the board? Do you remember?
Fay
The board was about eighteen people, something like that. It was a pretty large board, and almost everybody attended meetings and so forth. But I had to learn to somehow work alongside of people who were giving the opposite message to what I was passionate about, at least for the while that I was on the board. So that was interesting.
Rousso
Did you choose to go off it?
Fay
Yes, I chose to go off of it, yes. When I was no longer the president of the chapter, the chapter really became CIDNY (Center for Independence of the Disabled in New York). It really did. It was kind of like it existed to sort of galvanize the energy that was around, and then got this contribution, and then directed itself into CIDNY, and then it lasted a while longer, but not much longer.
Rousso
When you left the presidency, was it already kind of petering out?
No, I was the president at the point at which the grant was approved or--I know it was submitted; I'm not sure that it had been awarded.
Rousso
You were still president? Because I thought you said Carr was.
Fay
Right. Carr was the next president.
Rousso
So you had already submitted the grant under your--
Fay
It was either under my name or Carr's. I can't remember now. I know I was president when we--
Rousso
Talked about it?
Fay
--talked about it. I may not have been president when it was submitted; it might have been Carr at that point. Right, because--you're right, because I was the chairperson of that committee, and so I was not president at that time. No, Carr was.
Rousso
Did you choose to step down from the presidency?
Fay
Yes. I was involved in the Coalition, and I really was more in the local coalition, as well as, then, ACCD [American Coalition of Citizens with Disabilities]. That's really where I wanted to be.
Rousso
Coalition work.
Fay
In the coalition work, right. So yes, I did step down. But I didn't step out. I stepped down.
Rousso
That's an important distinction.
Fay
Yes.
II. The Development of The American Coalition of Citizens with Disabilities [ACCD] and Center for the Independence of the Disabled in New York [CIDNY]
Formation of the America Coalition of Citizens with Disability
RoussoAll right. Well, let's talk a little bit about ACCD [American Coalition of Citizens with Disability]. Tell me a little bit--we have a lot of this already, but tell me a little bit about the early days, how it got started.
Fay
ACCD got started as--it was almost--well, there was an annual meeting, the President's Committee on Employ[ment of] the Handicapped. Of course, it's now not that, but it used to meet annually. It was sort of a rehab meeting, voc rehab meeting, and a lot of people with disabilities worked in those areas and so got together, as well with people in Washington, who lived there, worked there. It became a meeting really for us to get together as a group, in general, and to socialize for the most part, initially.
But we would also kind of brainstorm and talk about stuff after the meeting, and so ACCD actually got started at one of those meetings, probably at one or two in the morning. There was a group of people who talked about the need for a national coalition. "Wouldn't it be great if we had a coalition of organizations of people with disabilities, nationally?"
Of course, there was the Rehab Act 504 issues; there were transportation is[sues]. I mean, there was a whole host of things that were coast to coast being addressed on various levels by disabled people at that point. So the five or six people who started the group--I don't know if I can give you all of their names, but--
Rousso
As many as you can.
Fay
Eunice Fiorito, Fred Fay, probably Roger Peterson, who's a blind man; Fred Schreiber maybe. He was from the National Association of the Deaf.
Rousso
What's the name?
Fred Schreiber. He's passed away, but--
Rousso
Judy?
Fay
Judy. I'm sorry. Of course, Judy Heumann.
Rousso
How about Phyllis?
Fay
Phyllis was there. I'm pretty sure Phyllis was there. I was not there. I was not at that meeting.
Rousso
Oh, you were not at that first meeting.
Fay
I was not at that first meeting.
Rousso
Do you remember when it was?
Fay
What year it was. Let's see. Let me think. It might have been about '75. The sit-ins were--
Rousso
Seventy-seven.
Fay
--'77. So this may have been '75?
Rousso
Sounds right.
Fay
Yes, around then.
Rousso
Somewhere, yes.
Fay
Yes. Anyway, that's how the seeds got planted.
Rousso
You weren't there because you didn't go to that meeting?
Fay
I didn't go to that meeting. But I do recall being at an early planning meeting. I don't think I was at the very first one, though. Anyhow, that was, as I said, the seed. And then from there, there were other meetings. There were meetings on local and state levels, just organizing meetings, and then there were people who came together to talk about--and I was at those meetings--to talk about the structure, how we would operate. There were various levels of membership that had different numbers of votes in the assembly, national organizations, of course, having the most votes; state coalitions were probably next, or state organizations, and then local organizations.
Rousso
Can you define what ACCD was and what its mission was?
Fay
ACCD, for the first time in the history of people with disabilities, brought together the entire community that was out there, community of organizations of disability, of people with disabilities, most importantly, organizations of people with disabilities, across disability. National membership was the National Organization of the Deaf, American Council of the Blind, the Paralyzed Veterans of America, the National Spinal
Cord Injury Association, or NPF, National Paraplegia Foundation. What were some of the others? At least that, I can't remember--. NASH, was the other one, I think, National Association of Something Handicapped.
Rousso
So it was really cross-disability.
Fay
Totally cross-disability.
Rousso
Did it include parent groups, too?
Fay
No.
Rousso
No parent groups.
Fay
Parent groups were not considered active members. They could be associate members, as the provider organizations were. It was a coalition of organizations; it was not a coalition of individuals. That made it, I think, also extremely--I think it made it unique.
Rousso
Right.
Fay
Individuals did not have any real--I mean, you could be an individual member, but there was nothing attached to that other than you were an individual support[er] of what the coalition was doing.
Rousso
What was their vision of what the coalition was going to do?
Fay
The coalition was going to address, as a community, issues that related to discrimination, on a global basis, to prevent things like--for example, a curb cut. Curb cuts are great for people who use wheelchairs or have mobility problems. However, if you're blind, the curb is a disadvantage.
Rousso
Right.
Fay
So what do we do about that? Well, we texture the incline, the ramp, so if it's textured, then somebody who is blind knows that it's there, and it works for everybody. Again, on a very simplistic basis, it was so that no one person or no one group of people with disabilities would be excluded from any achievement, so we didn't--one group did not overlook another group.
Are we on?
Rousso
We're on.
Fay
Okay. Its focus was disability rights, totally and completely. It started with 504, which was obviously the antidiscrimination legislation up until that point, and that's where it was all along. We did support issues that related to, say, one group, like the transportation issue. People who were deaf were not really--
Affected.
Fay
--affected by it, exactly. But there was certainly support for it. And we did support other things, like--I can't remember now, but people who were blind and the vendor thing. I can't recall now what the issue was. But I remember that was also part of what we did, is support each other's issues. Again, it was the first time that I, and all of us, really, had worked very closely together, and even known one another. We learned from one another. It was a wonderful experience. To the point--we finally got to the point where we were so comfortable that we could actually make jokes about each other's [disability]. It was a subculture. When we were together, we worked hard. We had board meetings that went from Friday night until Sunday afternoons, and I mean Friday nights until Sunday afternoon.
But after the meetings, in the middle of the night, we partied as well. We had fun. We would go out to dinner in between meetings and just take over a city and a restaurant.
Rousso
What a sense of power!
Fay
Oh, my God! It was unbelievable! [Laughs.] You know, going down the streets of Mil--I remember Milwaukee [laughs], a board meeting in Milwaukee, and we--oh, God!--came out of this restaurant, all of us, like, en masse, in the middle of this street, and people looking at us: "Oh, my God, what have we got here?" You know? It was a wonderful feeling. It always was.
Rousso
Were there controversies when it was starting in terms of--was there disagreement?
Fay
There weren't really disagreements, I don't think. Well, there was controversy, yes. I mean, of course. A lot of it had to do with turf. I mean, that's the biggest thing in coalition. You've got to give up a little bit. A lot of the larger organizations had a lot of power. They had a lot of turf. I mean, PVA, not so much NPF, but the American Council of the Blind, NAD [National Association of the Deaf]--I mean, these organizations had staffs. These were well known. And so to be now in a coalition where you're giving up some of your identity when you do that, and you don't exactly know whether there's going to be any impingement on your [turf]--but at the same time, you know you've got to be there because everybody else is there, so you've got to be there, if nothing else, than to protect your interests.
But I think there developed a trust, certainly among the people who were on the board and the people who were representing the organizations. I think that trickled down. I mean, there really developed a trust that nobody was really out there to take anything away from anybody. I mean, you could disagree on an issue. That happened, of course. But we'd work it out.
Rousso
Did you have any hesitation when you first got involved, or did it sound like--
Fay
It sounded so right to me, Harilyn, because the whole notion of coalition and how we had been separated by the providers for so many years because there was this group for this--you know, UCP [United Cerebral Palsy], the National Foundation for Infantile Paralysis, the ARCs [Association of Retarded Citizens] of the world. There were so many organizations competing for money. We incorporated that model, if you will, as
Rousso
"We"?
Fay
We, people with disabilities. I mean, I think that we organized, when we began to organize as a community, along the same lines as the providers. Each was disability specific.
Rousso
By disability type.
Fay
Right. So we're going to organize, and we're going to fight for this. It relates only to deaf people or only to blind people or only to developmentally disabled. Whatever. You know, only to us. This was the first time that those barriers began to break down. So for me, it sounded right, and it was very exciting, very exciting. That was new.
But I have to tell you, Harilyn, ACCD actually disbanded in the middle eighties, and there hasn't been a coalition, not since then. Two weeks ago--right now in New York State, and across the country, but I'm involved in the one in New York State--a coalition to implement Olmstead. But Olmstead is a Supreme Court decision, as you know.
Need for coalitions
RoussoRight.
Fay
Okay. It was a Supreme Court decision that came down in 1999 that essentially states that people with disabilities have the right to live in the most integrated setting in their communities. It was brought about by two women in Georgia, who were in an institution and sued the state of Georgia, using the ADA [Americans with Disabilities Act], to have those services provided in their community so they could leave the institution. And it was opposed all the way up to the Supreme Court by the state of Georgia. Olmstead was the commissioner or the deputy commission of health in Georgia.
Rousso
I'm going to stop [the tape recorder] for a minute.
Fay
So I was at a meeting of this coalition to implement Olmstead in New York--CTIONY [Coalition To Implement Olmstead in New York], everything is now letters--about two weeks ago, and there was this very heated discussion about--actually, the group that was raising the issues was the psychiatrically disabled, the mental health advocates. There had been a letter that was written to--there had been an action taken, without getting into the specifics, that overlooked an important issue that related to people with psychiatric disabilities. When the groups brought to the attention of the steering committee that had decided to write the letter and send it, it was corrected in that another letter was written, sort of clarifying our position and including theirs.
However, there was a lot of discussion at this meeting about how do we not let this happen again? I can't tell you how it was going back and forth and back and forth. It was one of these things, like, we have to have representation by everybody, and so I began to see this entire group of sixty people now having to decide on everything. There is no structure to this group, and it was purposely left with no structure. But if you leave it with no structure, it's very difficult to take any kind of action.
I was thinking, "This is coalition again." These people are talking about this as though it never existed, you know? You talk about feeling like you've been around a while, oh, boy. It's almost like coming to see the cycle starting [again]. You know what I mean? Coming all over again. I was sitting with somebody, Denise Figueroa, who was involved back then, and her husband, Pat, and I was just looking at her and I'm saying, "Oy, ACCD, where are you?" You know?
Rousso
There is still a need, clearly.
Fay
Oh, absolutely, absolutely. And so I tried--I kept trying to say to these--I wanted to say, "Look, this is not new. Let me tell you a story," you know? And it just--so it hasn't gone away. The need for it certainly has not gone away. And I think we will probably come to--.
Rousso
It's so much easier now with email.
Fay
Yes. To communicate. You don't have to have these huge meetings and everybody traveling. Right. Oh, yes, absolutely.
Rousso
Let me ask you. As a result of your involvement with ACCD, did you do--I know you did some coalition work in New York City.
Fay
Yes.
Rousso
Did that come out of that, or did it start before?
Fay
That, I think, started before. The Congress of People with Disabilities started either before or around the same time.
Rousso
So it wasn't like you were inspired by it [ACCD]?
Fay
No, no. That just came out of the success of the gasoline crisis, which included everybody, and then--
Rousso
That's right. That was unusual,--
Fay
Right.
Rousso
--from what you're saying.
Fay
Right. And the human rights law. Both of those issues really had impact on the whole community, just about. Certainly the human rights law did. That was the whole
Rousso
You were on the board for many years, for a number of years.
Fay
On the ACCD board?
Rousso
Yes.
Fay
Yes, yes, for quite a few years. I was vice president when Phyllis Rubenfeld was president.
Rousso
This was 19--. It was before '86?
Fay
Right, right.
Rousso
And you were secretary.
Fay
I was secretary. Good Lord. That was a full-time job, let me tell you.
Rousso
You were on the board, and you were also on the nominating committee.
Fay
Right, right, right. Yes.
Rousso
So it seems like your first official role was in 1976, on the nominating committee.
Fay
Okay.
Rousso
Is that true?
Fay
That's right. Right. The committee was before I was on the board. I was on the board after I served on the committee.
Rousso
And the nominating committee was to nominate board members?
Fay
Nominate board members, exactly, yes. Then there was a membership committee for membership, organizational or otherwise. Yes. The interesting thing, though, also is that we were not ever able in New York, and I don't know exactly why, but we were never able to pull off organizing a state coalition. We tried, but it never really worked.
Rousso
How did you try? Do you remember?
Fay
Yes. We tried by contacting activists, disabled activists upstate. And they're there. I mean, there was a group, Disabled in Action in Syracuse, and elsewhere. But it just didn't happen. There weren't a whole lot of organizations really upstate, but we couldn't really even pull those that existed together.
Rousso
Do you know what their resistance was?
No, I truly don't. I really don't. I think maybe coalition building--it's important to have the direct kind of face-to-face contact--you know, meeting in those rooms and pounding out the bylaws or whatever it is, building, feeling like you have ownership in it. And I guess we couldn't do that because we weren't getting together. We tried to do this by telephone and mail.
Rousso
You didn't have money to get together.
Fay
No. Exactly, right, right. It would have been nice to be able to do that, but with the ILCs [independent living centers] now, having thirty-six of them all over New York State, it would appear to be--well, I don't know. Now the ILCs--the state Association of Independent Living Centers. There are several state committees, organizations of ILCs. There's more than one.
Relation between independent living centers and disability rights movement
RoussoIs that the equivalent of a coalition?
Fay
I think that may be. I think it's going to be very difficult to build any kind of coalition without the ILCs. I mean, the ILCs are the coalitions right now. Even in that room where I was talking about the Olmstead, most of the people in that room were people from independent living centers, most of them. I think the ILCs, in a very big way, became--when I say became the disability rights movement, don't misunderstand me; I think they're very different. But I think independent living is very different from disability rights.
Rousso
Because?
Fay
Because it's a service model. It's very difficult to receive money without being beholden to the people who are giving you the money. It's the government. I think that certain states, certain ILCs are better at it than others, but I think that the disability rights community was co-opted. Look, I'm one of the people that directed an ILC, and I said that then and I say it now and I hold to it, that a lot of the leadership in the disability rights community went to independent living. If you hear the current people, people who are in leadership in the independent living movement now talk about 504 or whatever, they don't even relate to ACCD. That makes me angry.
Rousso
Is it kind of forgotten?
Fay
They forgot it or--Berkeley is what's talked about, Berkeley. And the CIL and the sit-in and Berkeley and the CIL. Well, yeah, Berkeley and the CIL were responsible for hanging in there the longest. There's no question about that. But Berkeley and the CIL were part of ACCD.
Rousso
Why do you think that piece of the picture has been forgotten?
Because I think the people who were in leadership then at the CIL, like Judy Heumann, Ed Roberts, or whoever--I think they became the independent living movement. And so ACCD kind of like went into the background. For those of that that wasn't true for, like Phyllis and myself and Eunice Fiorito and, to some extent, Fred Fay--those of us who were involved in the early ACCD, who did not become independent living, just kept the perspective, really, and I just don't think others did.
Rousso
It's interesting, what you're saying. Do you think there is a disability rights movement now apart from the ILCs?
Fay
No.
Rousso
You don't think there are people doing disability rights?
Fay
I'm sorry, there is a disability rights movement. There is one group, and that's ADAPT [American Disabled for Attendant Programs Today, now, formerly American Disabled for Accessible Public Transit], that is truly disability rights, I think, the only one that's around now. That really is.
Rousso
You're defining disability rights as not having a service component, as mainly focused on rights, on advocacy, on activism.
Fay
Exactly. Exactly. On discrimination, on oppression. And I'm not putting down the ILCs, because I think the ILCs are crucial. All I'm saying is that--and some of them do a really good job at the advocacy, but they can't be disability rights groups because they're funded. They can't go out there and demonstrate against the state, the governor. They can be involved, as we were in New York, with an ADAPT action, but when I was involved in an ADAPT action, ADAPT is the one that's up front. ADAPT takes all the credit for it, even though I'm there because I work at the Westchester ILC. So there is one--ADAPT is definitely a disability rights group.
Rousso
But other than that, there's none.
Fay
Other than that, I don't know.
Rousso
So much of the activism just got channeled--
Fay
Right.
Rousso
--kind of like it happened in New York City.
Fay
Yes.
Rousso
With NPF turning into CIDNY and folding.
Fay
Exactly, exactly. Yes.
Rousso
So there's a piece of work missing.
Fay
Right, right. But I must say that ADAPT is doing a good job at bringing them together.
Why do you think there aren't more [disability rights organizations]? Is there a need for more?
Fay
I don't know why. I think--I think that disability rights is probably, in many ways, the same as civil rights, women's rights, blah, blah. And it reflects the climate of the culture. We haven't had that kind of--you know, that kind of--
Rousso
Support for activism.
Fay
Support, right, at all over the last twenty-some-odd, fifteen years. I mean, people aren't--you don't hear that; you don't see it anymore. There's no antiwar, anti-this. There's little pieces of it somewhere, but there's no big push for any of it. But I think it's gradually coming around to it. I think for disabled people as well. I think ADAPT is now a lot more visible than it has been, and out there.
But that definitely upsets me. ACCD was so big for ten years in the disabled community, and yet the references to it either are not there or they're somehow distorted in a way that just minimizes the impact that coalition had. It's kind of interesting. The folks who were involved the strongest--well, Judy was. Judy could talk to ACCD. And Fred Fay can. But there are not that many out there anymore, I guess, too. That's a whole other thing.
Rousso
ACCD was clearly a disability rights organization.
Fay
Clearly, yes.
Rousso
Were ILCs members?
Fay
Yes, ILCs were members. They were organizations of disabled people, because every board of an ILC has to be more than 50 percent disabled, so it's controlled by people with disabilities, so the ILCs were considered active organizations, yes. Definitely.
Rousso
All right. I think we've covered everything, 504 and so forth.
More on ACCD
[Editor's note: This tape begins about ten minutes into the second interview session due to inadvertent tape erasure. The topic is Fay's involvement with ACCD and what she remembers about its early years.]
FayI'm trying to remember all the people who were there. Unfortunately, I don't remember all of them, but I know that Eunice Fiorito was certainly one of them; Fred Fay was another; Judy Heumann, and I'm sure there were others.
Rousso
Was it a particular year that you're thinking about?
Seventy-three maybe? Seventy-two, '73. I'm not exactly sure of this, either.
Rousso
Okay.
Fay
But those folks were--it was talks about galvanizing this energy and organizing across the country and how we could think of the power and the impact we could have if we could do something like that, right? So out of a small group of people who had a vision--really, who just had the vision to do this and who had the contacts and who knew other people in other states who could manage to organize in their location--this whole thing happened. Again, it was an incredible accomplishment, the first time anything like this, any organization like this for disabled people had ever been organized, and the last time. It was a unique phenomenon, almost.
Again, to have been part of that was--you asked me whether there were any other times a little while ago that come out at me, and I think that I would have to say being as involved as I was--I was on the board of ACCD.
Rousso
From--
Fay
Not from the beginning, no. It was about probably a year or two into the organization that I ran for the board and was elected to the board. I did serve on committees. I chaired the nominating committee--
Rousso
You were on the nominating committee.
Fay
Right. I was on the nominating committee, right. I was on the Coalition Development committee. So I had been--and I went to every delegate assembly meeting, and every board meeting that was held in New York I was at, and some of them that weren't. And I went to all these annual--as I said, with the annual DCA [Delegate Council Assembly], so I was involved, but I wasn't actually on the board until I guess maybe two years or so into the group's existence.
For me personally, again, it was another level of growth, another level of development for me in terms of viewing all people with disabilities as peers, not just people with physical disabilities but people with learning disabilities, people who are deaf, people who are blind. There was such a--oh, God--there was such a respect for everyone and everyone's difference and really wanting to understand, so that people were learning sign language who didn't need to know sign language.
There developed almost a culture, a disability culture, which I believe there is, but talking about--we would make jokes. Blind people would talk about having to run into and bump into all these people in wheelchairs.
Rousso
[Laughs.]
Fay
People who were walking--I mean, there was a kind of camaraderie among us, with our differences, that was wonderful.
Rousso
What do you think enabled that to happen?
God.
Rousso
Was it just the right time, or--
Fay
I don't know, because it doesn't exist now.
Rousso
Right.
Fay
I think it was the right time. I think it was--it had to be more. The right time, what made it the right time? Again, I think it was a kind of new consciousness, so I think that the issues were critical. There was an intensity about everything we did, basically, in the seventies that certainly hasn't been duplicated since then.
Rousso
Right.
Fay
So I think that was a part of it. It was the broader picture. We were in this together, all of us. Yes, we were different on some level, but that wasn't what was important; what was important was that we, as--we were all disabled; we all had disabilities; we were all viewed by society in very much the same ways: as kind of subhuman, not worthy, not able to--not productive, not sexual, not--you name it. We were not all the things that we knew damn well we were. That cut across all disabilities. Those feelings cut across everyone.
Rousso
How about the passing of the Rehab Act [Rehabilitation Act of 1973], the fact it had been passed. Was that a mobilizing factor at all? Do you know if there was much awareness of it yet?
Fay
Obviously, 504 came out of that.
Rousso
That's right, but it was still a few years before it was going to be more regulations.
Fay
Right, it was still a few years before we did anything with the regulations.
Rousso
Right.
Fay
Do I think that it had any effect?
Rousso
Or was it a mobilizing thing, or not really?
Fay
I don't think so. I don't think so. I don't think so. I think 504 was, but I don't think the Rehab Act per se was.
Rousso
Okay.
Fay
Not in my judgment. No, I don't think so.
Rousso
Who were some of the key players in the startup, in the early leadership, that you remember?
Fay
I mentioned Eunice and Judy.
Right.
Fay
Fred Fay. Roger Peterson. Fred Schreiber. The people from PVA Mansfield. I cannot think of his first name. But that's enough? Okay.
Rousso
Fine, whatever.
Fay
Certainly Phyllis Rubenfeld was involved in the beginning.
Rousso
Were you already friends? I know you knew her, but had you become friends?
Fay
Yes. We had come actually back to being friends, and actually our friendship grew with the disability rights stuff. I would say from the early seventies, from the gasoline crisis, the demonstration for that. All the organizations on the local level, Phyllis and I were in together. We worked together on almost everything. So our friendship--definitely we were friends then.
Rousso
Also, we'll talk more about that later. In terms of the first... I know they had picked an executive director for ACCD.
Fay
Yes.
Rousso
Frank Bowe. Tell me a little about that.
Fay
Well, Frank Bowe was the first executive director who was hired for ACCD. He was in--I have to say the board of the American Coalition was a truly active board. That board made the policy, made the decisions, was not a board that met quarterly and nothing happened in between. People were in touch with one another; committees functioned; reports were written; board meetings were three days long. You'd get there on a Friday night and you'd leave on a Sunday night, and let me tell you--I was the secretary for years--I had tapes that I had to transcribe from board meetings that would take me weeks before I could get it all.
We worked. We truly worked. And we functioned pretty formally in that we followed Robert's Rules at meetings.
Rousso
How big was the board? How large?
Fay
The board was--oh, God--fourteen, fifteen? Something like that. And we had pretty good attendance at board meetings. There were not many people who didn't show up. There may have been one or two people at a meeting that wouldn't show up. But by and large, people came to every single meeting. And worked until the wee hours of the morning, whether it was a committee report or meetings or whatever it was.
But you also had fun. I don't mean it was all work and no fun. We would finish a meeting at eleven o'clock and end up in somebody's room, getting complaints from others because of the noise. We would kind of hang out and then have a couple of drinks or have food sent up, and just laugh a lot and sing a lot. So we also had a lot of fun.
[tape interruption]
Sorry. What was I talking about?
Rousso
We were talking about the meetings being rather intense and--
Fay
Right. And then there was this release of the tension of the meeting.
Rousso
Was there a lot of agreement or was there a lot of difference of opinion or controversy?
Fay
There was controversy at the board meetings. Mostly it was on how to approach an issue, and the conflict might be among people who were very conservative and those who weren't, those who wanted to work with politicians, for example, and those who wanted to sit and stand outside their office and demand that something be done. So there were those points of conflict. But they were philosophical. They weren't really issue-related. You know what I mean? They were really in how to--
Rousso
Strategy.
Fay
Strategy.
Rousso
Tactics.
Fay
Exactly. Tactics and strategy, right. That's right.
Rousso
Were all the members [of the board] people with disabilities?
Fay
Yes, we had--well, let me back up--no. There was a parent, as I recall, of a deaf person, who was on the board; there was also--oh, God, the woman who, the polio--Gini Laurie was on the board very early on. She was not disabled. So no, there were people who did not have a disability who were on the board. But most of us were disabled, yes.
Rousso
Was there a philosophy that organizations that belonged were led by people with disabilities?
Fay
Yes. Yes.
Rousso
Was that a requirement?
Fay
That was a requirement for active membership. There was a level of membership which did not have a vote. Basically, they were supporting members, associate members, I think we called them. Those were groups of--like, for example, the National Rehabilitation Association. You know, providers, basically.
Rousso
Right.
Fay
They didn't make policy; they were just that, they were associate members, they were supporters.
Rousso
What was your recollection of some of the kinds of work that the Coalition did?
Frank was instrumental in writing grants to obtain money for a lot of the technical assistance. We did a lot of traveling. We took these models, we developed the models.
Rousso
What kind of models?
Fay
Training models, I'm sorry.
Rousso
Was this was before 504?
Fay
No, it was after 504. It was after 504. We didn't get a whole lot of money until after 504. We didn't get contracts or anything.
Rousso
Was 504, the project to get the regulations of 504 kind of the first major project?
Fay
Yes.
Rousso
It was.
Fay
Yes. Absolutely, absolutely. The structure was there. The organizational structure was there. It [the ACCD board] probably met--I'm trying to remember--I would say it probably did have meetings prior to the 504 thing. Frank was in place. Frank was hired. But in terms of the money and activity of the organization, that came after 504, after the passage of the writing of the regulations.
ACCD and New York efforts to pass Section 504 regulations
RoussoSo tell me your recollection of how that whole 504 campaign got started, and then we will focus on the New York piece.
Fay
Okay. There was, again, a lot of activity around these fourteen words, which is, like, "no otherwise qualified person or handicapped person shall be discriminated against by any program or entity receiving federal financial assistance" or something like that. Now, that was, that is Section 504, that's it, just those words. But nobody really knew what the hell to do with these words. And so the law was there from 1972, and nothing was happening.
The Department of Health, Education and Welfare, then HEW, was designated to be the lead agency for the implementation of this, so it was up to them to write the regulations that would implement Section 504. ACCD worked on trying to get them to write these regulations, through the secretary of HEW.
Rousso
So ACCD was very aware of 504--
Fay
Yes.
Rousso
--right from the beginning.
From the beginning, the membership of the coalition--I mean, that was a big part of what I think galvanized the development of ACCD--
Rousso
Right.
Fay
--was to get this important piece of legislation implemented. This was the first civil rights law for people with disabilities, nationally, and whatever. And so that was probably the issue that galvanized the coalition. So there was a lot of, like, meetings that went with how are we going to get this to happen, what do we do, what kinds of actions should we take? And there were things done. I can't tell you--I don't know if I was that closely involved at that point with ACCD. I don't think I really was. It wasn't until after 504 that I was. I don't exactly know what activities led up to the organization of the simultaneous sit-ins, but I remember myself coming into this with the discussions of the simultaneous sit-ins, even though I knew ACCD was doing stuff before that, but I wasn't too sure what.
Rousso
Okay, why don't you begin when you came in.
Fay
I was here in New York, doing my thing with the Metro chapter of NPF, the Congress of People with Disabilities--
Rousso
The Congress was not directly an offshoot of ACCD.
Fay
No. We ultimately were members.
Rousso
But it existed before.
Fay
It existed before, right, right. And it existed to address issues locally, in coalition. Okay. So through just knowing Judy Heumann, knowing Eunice Fiorito, and of course, Phyllis and I being friends, there was always--the communication and the loop of the information flow was always there. It was, "What is ACCD going to do?" and, "How are we going to be involved" or, "We should do this and we should do that," and people were getting--there seemed to be a ground swell of urgency about getting these regulations signed.
So the board of ACCD, with Frank Bowe, together planned out the strategy for how we were going to do this. They decided to do it on a regional basis, actually the federal regions, so there would be simultaneous demonstrations in each of the federal regions, and sit-ins. And so material was then prepared that went out to everybody. All the material was the same thing, went out to everybody.
Key people in key states were being asked to organize the people around them. Some states had no--I mean, some places had no organizations; some had one; some had many. So key people were contacted, the organizational reps were contacted, to organize the groups and the people in their particular area or state, whatever. So it went really local-state or state-local, depending on what resources were already there. You know what I mean? Like, sometimes it was the state. It might have been a state organization that existed without local stuff.
But whatever was there, the resources that were known were contacted, were given organizing information: call a meeting of this, do this, give this information, this flier on 504.
Rousso
So it was not just cities where those regional offices were? It was the whole state or even surrounding states?
Fay
No, there were specific locations where the demonstrations were going to be. Basically it was going to be at the federal offices of HEW.
Rousso
Right.
Fay
But for people who couldn't get, maybe, to where this was, if you were up in, I don't know, Albany and you couldn't come down to New York, then you could do something locally. But every effort was made to get people down. So money, volunteers, everything, every bit of resources that we could possibly gather was used to get people organized to that location.The time was selected, the date, the time. The strategies were shared. We were told, we knew that the Washington folks were going to take over the office, and that was supposed to be the focus, obviously, the Washington office--because that's where [HEW Secretary Joseph A.] Califano [Jr.] was. So that was going to be the focus. We were all going to do as much as we could. If we could sit in as long as they did, fine. We needed to do as much as we possibly could do.
New York sit-in
RoussoDid you organize the New York sit-in?
Fay
So the people in New York--that is, me--you've got all the folders [laughs], folders with all my notes--oh, people like, oh, let's see, who else was involved in New York? Phyllis and Eunice were really involved in Washington, so from New York--
Rousso
They weren't in New York.
Fay
They were not in New York; they were in Washington, right. So it was me, it was Denise McQuade, Carr Massi, Julie Shaw--other people--
Rousso
Was Adrienne Asch involved?
Fay
Adrienne was involved, but not in New York. I don't know where Adrienne was.
Rousso
Okay.
Fay
Who else? Others. I can't remember. You know, the memberships of DIA, the memberships of the local chapter. Whoever we could get to be there to support us were there. People were given--if they couldn't get out, they were given assignments, like, "Call Califano's office. Barrage them with phone calls, telegrams. Everything you can throw at them, throw at them." And so this took weeks of preparation. It was not
We had planned in advance, obviously, the group that was going to go inside and the group that would stay outside. So those of us who went there that day went prepared not to come out for a while. And we didn't know how long, I mean, we really didn't. It depended, obviously, on how we were treated and what came out of--what the response would be.
But we were sort of taking a lead from the Washington group, which of course later turned out to be the California group that stayed out the longest, whatever. So we, a group of four or five of us went into the building, up to the office to meet with the folks that were there. Now, by that time, they already knew that this was happening in other places, so they were just one of the federal regions that was having to put up with these disabled people that day.
I must say, they weren't--I mean, they were not--how can I put this? They were pretty accommodating. I mean, they tried to be accommodating. I can't say that we had horror stories that others did.
Rousso
Had you chose to have a relatively small group inside and a larger group outside?
Fay
Yes.
Rousso
Was that your strategy? You didn't want a whole crowd of people inside.
Fay
No, what we wanted was enough people inside--first of all, when you're dealing with disabled people, there's always strategies in terms of disability. So it was who could actually go there and be there overnight. That's not everybody.
Rousso
No.
Fay
We had to take that into consideration. So those of us who went in, went in knowing that we would have to stay there for as long as it took. And so we had to be able to be there those number of hours without, like, medication. We didn't know what we were going to have there. We didn't know if we could eat. We didn't know what they were going to be doing with us.
Rousso
So did you bring food?
Fay
We brought some food, yes. I brought a toothbrush and other stuff with me.
Rousso
That's good.
Fay
Right. That's always good. You know, just basic kinds of stuff. We were given a telephone, which was really good, because we were given a telephone, and we had numbers to call to find out what was going on, like, it was certain people's responsibility to coordinate communication. So we would know who to call, to find out what was going on and find out what we should be doing. Like a central command, so to speak.
My God, we were organized. While I'm telling you this, I can't believe it. I mean, we pulled this stuff off. God!
Rousso
Were you calling Washington?
Fay
It was Washington.
Rousso
Who was coordinating it.
Fay
Right, right, and we were told what was happening there, basically what was happening there, what was happening in California, and Colorado was the other place that comes to my mind. I don't remember anywhere else, but those three--four: New York, Washington, California, and Colorado. And there were horror stories. There were people in Washington particularly, who were not allowed to take their medication; they weren't given water. The most people at that point were in Washington. Lots and lots of people took over Califano's office in Washington.
He, interestingly enough, refers to that--it was his first week in office, and he always said this was like his nightmare. All of a sudden [laughs], there were all these people on his door step, literally, because in Washington they actually went to his home as well; then stayed outside his house, wanting to get him to sign.
Rousso
How did you feel inside? Were you nervous?
Fay
I was a little nervous. I do remember being a little nervous, but overriding my being nervous was my resolve to stay there. I mean, I was not going to leave. And as I--
Was Julia Schecter there? No?
Fay
Julia might have been outside. Truthfully, I don't remember. She wasn't inside.
Rousso
There was another woman's name on the sheet of paper, a contact person.
Fay
On my sheet of paper? [Refers to the material Anna had given Harilyn as background]
Rousso
We'll discuss it again.
Fay
Okay. I don't know--
Rousso
But you think Frieda [Zames] was--
Fay
Frieda was certainly involved, yes. I think Elaine Pomerantz was another person who was inside. I'm pretty sure. I'm thinking of the photograph, the newspaper photograph. So we were there until--let's see, we started out in the morning, and we left the following night, so, I don't know, thirty-six hours, something like that, forty-eight hours, I don't know. But they were still sitting in in Washington. We stayed out, we were in longer than Colorado or the other regions, but California stayed out the longest. It was
Rousso
How did you decide when to leave?
Fay
It was clear that we were not going to get--well, there were two things. One, again, we were taking our lead actually from Washington and from this command post, and I was periodically calling there. By the next day, they weren't throwing us out. Their orders were: Don't throw them out. Make them comfortable, I mean, short of putting us up in a hotel or something, but we were, I mean, comfortable.
Rousso
Were you literally sitting in someone's office?
Fay
We were in a room about this size, with a table in the middle, chairs on the side, and a telephone. At night we slept in our chairs. I remember I put two chairs together and sort of tried to curl up on that, but we didn't really sleep. We really didn't. We told stories, we told jokes, whatever we did to get through that. But we had a bathroom at our disposal.
Rousso
Was it accessible?
Fay
Not really.
Rousso
No?
Fay
No. But it was usable. It wasn't really accessible. It was usable. I'm trying to think--so I was calling Washington, and we were given two--and I remember finding that--I didn't remember that until I looked through that folder [on the sit-in]. There were two press releases.
Rousso
One yes and one no.
Fay
Right. One was yes and one was no. So we left with the "no." We didn't get what we wanted, but we did let them know we wanted it or something. I can't remember exactly what it said, but we didn't consider this a failure, however it was worded. But, again, this was coming from the command post, so everybody was getting the same messages out. The people in Washington stayed, but I remember leaving. It was about eleven o'clock. It was nighttime. I remember that. So it was from the morning of the previous day.
Rousso
How did you feel, leaving? Did you feel okay?
Fay
I think, as I remember, I felt an enormous let-down. I always felt a let-down after a huge activity with a lot of excitement and work that went into it. It was always a let-down. It was a let-down after every ACCD board meeting. So I would say for a whole day I just wanted to curl up in bed and just sleep, get through that.
So I felt that, but I also felt pretty good about sitting in and not leaving a federal office. Again, this is Anna, who sat until ten o'clock at night in college, right?
Rousso
I remember.
With the college president wondering what the hell is going on here, and I don't even compute it, you know? So yes, I felt pretty good about that. So I guess [it was] a mixed bag. I would have loved to have left, knowing that he signed, and also to be part of the group in California and Washington, but we did the best that we could, and I knew that. It was good. We certainly did a good job, did a good job.
Rousso
After you came out, and went home and crashed--
Fay
Right, and crashed.
Rousso
--were there any other things that you were doing while the California group was sitting in?
Fay
I'm trying to remember. I think most of that--yes, there were things that had to do with the media. There were things like we would have press releases; we would call press conferences; we would--you know, to keep attention on it.
Rousso
Right. You did get some press coverage.
Fay
Yes.
Rousso
Talk a little about that.
Fay
We got press coverage actually while we were sitting in. Part of what we did was send out enormous numbers of press releases. That was part of the preparation so that the press knew that we were sitting in and where and all that. And so there was coverage. There was a photographer and a reporter who came up into--and they let them in--they came up into where we were sitting in, and then there were others that obviously were outside, who were talking with people outside. They interviewed us, and there wasn't a whole lot of publicity in New York after that, after we actually sat in. Most of the publicity was in California and Washington. From that point on, they kept it going. They really were incredible.
They had the numbers. They really did. They had the numbers of people. They were really able to pull it off. And they did. They did.
Rousso
The numbers of the people who were able to stay.
Fay
Right.
Rousso
To sit in.
Fay
Right. Right. Right. So that was quite a feat. To be involved with something like that is--what a unique experience, a once in a lifetime.
Rousso
Did it somehow feel different than the things you had done before or was it simply an extension. I mean, you had done many things.
Fay
It seems like an extension. I don't think I was actually aware of the enormity of that undertaking at the time--you know, to think of what we actually pulled off. No, I don't
Rousso
It was terrific.
Fay
Yes.
Rousso
Do you think that that demonstration in New York had any particular impact on the disability community in New York?
Fay
Yes, I do. I think those demonstrations had an impact on the disability community everywhere. I really do, Harilyn. I think it was a shot in the arms of all of us. Suddenly we were a group to be reckoned with. We weren't playing around. We were very serious about the fact that we had been oppressed and discriminated against forever and that this was not acceptable, that at every turn, we were going to have to be reckoned with. This was not going to continue. And I think that disabled people really got that, sort of got that message and felt it. And I think that it had an enormous impact. I don't think there would be an ADA today if that had not happened when it did. I really don't. It set the groundwork for it.
Rousso
Even in New York City--
Fay
Yes.
Rousso
--it had an impact on the local disability groups?
Fay
Yes. I think that people suddenly had something to hang their hats on. There was a law now, and so there was more--not enough, but there was more of a--what am I trying to say? You know, the transportation--every issue was viewed somewhat differently. It was no longer like we were saying, "Please, please, please give us accessible transportation." No, it was "Inaccessible transportation is not acceptable. We are a group that--" There was almost a demand, as opposed to a "please, please," you know, like a request, right. It wasn't a request anymore. And I think that the fact that there was a law and also the fact that it was such a huge demonstration of strength and solidarity that I think it definitely had an impact, yes.
Rousso
Do you know whether more people with disabilities in New York City got involved in disability groups, as far as you recall?
Fay
You know, I think students did, because 504 made certainly a big difference to them. The universities, the colleges had to be accessible so now disabled students had a voice in their school that went beyond--well, they had a voice, which they didn't have up to that point. They had something to refer back to when their classes were in inaccessible buildings or whatever it was. So they organized--there were disabled student organizations that popped up, more of them.
I don't know whether there was more organizing that went on, aside from--because then you've got the independent living movement coming into this, which gradually--I mean, obviously that wasn't overnight, either.
Rousso
No.
Fay
But that kind of came in and had an impact on organizing, on the organizations.
Rousso
In some ways, that overlapped so it's hard to sort out which is which.
Fay
Right. Right.
Demise of ACCD
RoussoIn terms of ACCD, what impact did this victory have on its work, focus?
Fay
It was recognition, obviously. It was recognized now as the leading disability group. There wasn't anything that happened on the national level that related to disability that ACCD was not engaged in in some way. You know, anything that was--I'm trying to think of--well, the money for the training. That was a big piece of it. We had grants to develop the models for training and then to actually go out and do it everywhere. We did it all over the country, including Puerto Rico. I remember being involved in one.
Rousso
Who are the people who actually developed the model?
Fay
It was Frank Bowe along with certain members of the board of directors. It was, how do we want to do this? What do we feel will be the most effective? And so there was the "train the trainers," basically, model. So you've got people who were involved and active. You train them, and then the notion was to go back and they would train, wherever they came from. But the money was there to transport people and to pay for people's accommodations, whether they needed--whatever--I mean, interpreters, attendants. The money was there to do those things.
Rousso
Where did the money come from?
Fay
It was federal money. It was RSA [Rehab Services Administration] money. It was Department of Education, HEW, demonstration grants, things like that. So yes, there were a lot of mostly those activities that ACCD was involved with afterwards, after the 504. Well, there was PL. 94-142 [Public Law 94-142]. There were a lot of things. Whatever issue there was, ACCD was there. It was in the forefront, after the 504 thing.
Rousso
And you were on the board?
Fay
Then I was on the board, yes. I was the secretary for a while, and when ACCD dissolved, I was the first vice president. Phyllis was president at that time, yes, and I was first vice president. That was in 1986?
That sounds about right.
Fay
Yes, it was 1986.
Rousso
Right.
Fay
Yes.
Rousso
Tell me a little about your take on why it dissolved given that great success? I know it was many years afterwards, but what's your sense?
Fay
I think that the climate in general changed. I think that there was a conservative administration; I think that the money, certainly for the kinds of things we were doing, dried up, so we couldn't pay the staff we had. We didn't have the grants. We couldn't do enough fund-raising to get the money together to keep it going. I think there was also less of an urgency. We had 94-142, we had 504, we had 502, 503. So we did have laws, we had the antidiscrimination laws. I guess that the work was going on at the local levels, and then there was the independent living movement, which I keep saying, keep coming up with! But I did think it had a lot to do with it.
Rousso
Was that involved in the demise of ACCD?
Fay
Yes, I think the leadership, the disability rights leadership in the seventies and early eighties were definitely involved in ACCD, and I think that leadership, after a while, was direct--well, they went into directing independent living centers. That led, I believe, not only to the demise of ACCD but also to the demise, actually, of grass-roots organizing, of grass-roots organizations that existed in the seventies. Well, DIA is still around, but not--just in general the kind of organizing efforts that were successful in the seventies were just not there anymore. Existing groups, maybe they continued to exist, not with the same numbers, not with the same strength, but maybe still there. Because, again, they went on the staffs and boards of independent living centers. It was probably--historically, I guess, it will be interesting fifty years from now to look back on where we go next and what will happen with the independent living centers and how that movement will evolve into something, because it's not going to stay.
I mean, it's all a natural evolution. It's hard to accept that. When it was clear that ACCD was not going to make it, there were those of us, die-hards, who hung in there until the last absolute second, hoping that there would be a spark that would just ignite and it would all come back again. But obviously it wasn't going to.
Rousso
So when you're saying that, you're talking about more than just money.
Fay
Yes.
Rousso
You are talking about the energy.
Fay
Right, exactly.
Rousso
The energy was no longer there.
The energy wasn't there. The energy was not there anymore. It was hard. It was hard to give that up, for a lot of reasons. I mean, many, many reasons. Personally, because of what it gave to--well, speaking just for myself, what it gave to me personally--you know, the sense of accomplishment, the being with other disabled people, differently disabled than myself.
Rousso
You got a lot more from ACCD than you did on the local level.
Fay
Absolutely. Yes, absolutely.
Rousso
Even though you said that in those local demonstrations, there were many groups represented--
Fay
Yes.
Rousso
But now on the national level there was more interaction.
Fay
Yes, more interaction, more intensity, more--yes. It was different.
Rousso
I see.
Fay
We were thrown together, twelve to fifteen people on the board of ACCD. We were thrown together, practically locked up in a room for four times a year for board meetings that went from Friday night to Sunday afternoon. There was an enormous amount of intensity in all of that. The relationships were different, our relationships to one another. It wasn't like New York, where you would meet locally for a couple of hours. Not that certainly there wasn't an energy there as well, but it wasn't the same. It was not the same.
There are people now who were on the board of ACCD or members of ACCD, not on the board, just remember the delegate council assemblies and the annual meetings and stuff, who keep talking about a reunion, a reunion. I feel it as well. It's like a need to or a desire to have some of that back again. Of course, it's gone, but--
Rousso
It's hard to let go.
Fay
Very hard, very hard. It was hard to let go. Definitely. But you do.
Rousso
It sounds like it meant a lot to many people--
Fay
Many people.
Rousso
--who were there.
Fay
Yes. I think to probably everyone who was involved, I think it meant a lot.
Rousso
How did the final decision get made?
Fay
By the board. It was finally clear we were bankrupt. We couldn't pay bills. We just were not able to function, and people were sort of not--as you said, the energy was
Formation of Center for Independence of the Disabled in New York [CIDNY] with grant proposal
FaySo are we going to get to CIDNY [Center for Independence of the Disabled in New York]? Yes?
Rousso
Well, yes. We'll move right along to CIDNY. Tell me what you remember about how it--now we are kind of shifting gears here.
Fay
Yes, we're shifting a little bit, shifting back to the chapter, the metropolitan chapter of NPF. The membership of the chapter, the board were, interestingly enough, mostly women. Actually, the disability rights movement in general--I think there were--I would guess at least locally, in New York, there were more women than men. In New York. I don't know about the rest of the country, but it was like that here.
Rousso
Did that mean, though, that there was no sexism in the movement because women were in the majority, or could you not say?
Fay
No, I don't think it meant there was no sexism. I think it meant that, for whatever reason, women with disabilities were more likely to direct their energy to changing something, whereas the men--I don't know, the men--not all, obviously, there were some men involved--but they were not as ready to identify, I think, with a movement of disabled people. Look, the people who were involved in the movement were those people who had, for the most part, accomplished. It wasn't the people who were still--and it's true till today. It wasn't the people who were in their rooms at home or institutions, staring at a television set that made this work. It was those of us who had been, who were able, however we were able to do it, to make it in a society that put blocks and walls in front of us attitudinally--sometimes literally and figuratively, certainly, every step of the way.
So we were the people who really made up the guts of the movement. I think that disabled men were more or less--they were working, and they were not--they had their lives, their families, their jobs, their whatever, and for whatever reason, they were not as willing to move into an identity that--
Rousso
It's interesting.
Fay
Yes, I'm not sure I know why. I'm really not sure.
Rousso
Are you saying women were quicker to identify with the movement and the disability identity than the men, that you know?
Fay
I think so. I think so, yes.
It's a very interesting observation.
Fay
I mean, I'm sure there are lots of reasons, Harilyn. This is just an anecdotal kind of thing. But it was true, I know that there were more women.
Anyway, so there was the chapter. One of our members, Julia Schecter, was very active in the chapter. Julia's issue--we were all pretty much involved in lots of the local stuff. I mean, sometimes some housing issues, attendant care issues, curb cut issues, barriers, transportation issues, whatever around the city. Through Julia's efforts, the chapter received a substantial contribution of $25,000. That was a lot of money. It's a lot of money today. It was really a lot of money then.
When we got the money, we were, like, okay, what is the best way to use this money? We spent many hours in many meetings, the board did, reporting back to the membership on what we were going to do with this money. It was finally decided that we would apply for a grant from the federal government to establish an information and referral center for attendant care.
Basically, it was an independent living center, but we called it an I & R, an information and referral center for attendant care. The issue we decided to focus on was attendant care, because that, we felt, was in keeping with what our membership deemed--what was important to them, and also, in general that it was a very, very important issue for people, just--it was a basic issue.
So the issue of attendant care was the one we decided that we were going to focus on. So a group of us--I believe we were called the project development committee--got together. Actually, we were six women.
Rousso
You were no longer president.
Fay
Carr Massi was president at that point. Right, I was no longer president. So six women: Roxanne Offner, Elaine Pomerantz, Julia Schecter, Fran Barish, Carr Massi, and myself. That's six, I think.
Rousso
Yes.
Fay
Okay. And so the six of us got together and took parts of this proposal. We got the grant application, and we took parts of it and worked on it, got together, shared it. We met over weeks to put it together and to get the information.
Rousso
Who was giving the money?
Fay
It was the Department of Education, the federal money, RSA.
Okay. So we got together, we wrote the grant, we submitted the proposal, and we got it.
Rousso
Had you ever written a proposal? Oh, you had written proposals before.
I had done this as part of my job. Yes, I hadn't actually written a proposal, but I certainly knew--I had been part of many proposals that were written, so I did have some background in it. Actually, the rest of us had not, though Roxanne probably did. I mean, none of us were grant writers. None of us were. So we really put this together--we read the directions very carefully. We had some help. We did call the people in Washington who were going to get [give] the grant, and whatever questions we had, we asked. We got good documentation, justification.
Rousso
And you decided on attendant care because that seemed like a big need in the community?
Fay
Absolutely. It was a big need in the community, a big need certainly in our membership, the NPF membership, and one that was near and dear to our hearts. So that's what we wanted to focus on.
Rousso
Okay.
Fay
So we got the money. Now, the name, CIDNY, we just threw it around. We went probably to all the other grants [laughs], "Okay, what do we name this thing?" You know, it was we can't call it CIL [Center for Independent Living]. Well, CIL was the one in California. We worked with them as well on this, back and forth.
Rousso
So you did have a vision that this was going to be an independent living center?
Fay
Yes. Yes.
Rousso
That was your reason.
Fay
Yes. Yes. Yes. And so the name was chosen when we sent in the proposal. CIDNY. So it was the Center for Independence of the Disabled in New York. So it was an independent living center. We were pretty clear about that.
So when we got the money--I think it's important to document some of the angst that went along with this, too, and not everything being hunky-dory. It was a painful time because there were six of us, as I said, who wrote the grant, and the money came through Julia's efforts.
Rousso
Julia--
Fay
Julia Schecter. Someone she knew, someone in her family, actually, who gave the contribution of the $25,000 that made it possible for us to even go for the grant.
Controversy selecting first director
RoussoOh, I see. I see. Was it a matching grant? You needed to have $25,000 to start?
No, but we needed to have something. We needed to be able to show them that we had the basis of some [cross-talk; ...]. We asked for $63,000, the total amount being eighty-something thousand, something like that, for the first year. So it was through Julia's efforts that we were able to even submit the proposal and get the money.
There were those people who felt that Julia should have been--and that's not an unreasonable expectation, because this happens--it happens in a lot of places, that Julia should have been the director of the center, without question or whatever.
Rousso
Wasn't she working at that time?
Fay
That's a good question. I think she was. I think she was, Harilyn.
Rousso
But she wanted the job.
Fay
She wanted the job. And then there were those of us who felt that the job of director of the center should go to somebody more connected to the disability rights movement than Julia was, with--well, just more connected to the disability rights movement.
Rousso
She was not very connected?
Fay
Not really. No, not really. She was involved in NPF, that's for sure. And then later on, Julia obviously was with the advocate's office for a number of years and did some really important things. But she was--
Rousso
Should I move that? [Refers to placement of the microphone]
Fay
No, this is fine. I wasn't going to say that Julia shouldn't get--I didn't say that Julia shouldn't get the job, but I didn't think it should be an automatic shoo-in.
Rousso
Right. Right.
Fay
I really felt that it should be opened up to anybody in the community who wanted it. The board of NPF were the ones responsible for selecting the, hiring the director. The memo that I think I sent you that went along with the draft of the proposal--I left that in there because I wanted it to stand as documentation of controversy. More than just controversy; there was some real schisms in the organization at that point. When Pat Figueroa applied for the job, I frankly believe that Frank should get--not Frank, Pat. Did I say Pat?
Rousso
Right.
Fay
Pat Figueroa. I believed that Pat should get it.
Rousso
Was he well known?
Fay
Oh, yes. Pat was very involved in disability rights stuff in New York. He was. He was with So Fed Up, which was a student organization. Yes, Pat was involved. You know, I tell you something interesting, Harilyn, how this broke down, and I don't think this is unusual. Those of us who grew up disabled fell on one side of this, and those who were
It was Carr, myself, to some degree Elaine Pomerantz who believed that Pat should have the job. Fran, Roxanne, Julia and others felt that Julia should have it. So it created, where there were very sort of--comfortable relationships became--you know, people just didn't talk to one another.
Rousso
Okay. That's pretty heavy.
Fay
Right.
Rousso
Now, Pat had been disabled since childhood, too?
Fay
Yes.
Rousso
Julia was disabled as an adult?
Fay
As an adult, yes. And Fran was disabled as an adult. And Roxanne, of course, wasn't disabled, but people who are not disabled identify more with people who are disabled as adults.
Rousso
Right. So how did you handle it?
Fay
Well, I handled it by being very honest and above board. I really was. The memo I gave you I think documents what I did and why I did it.
Rousso
For the record--
Fay
For the record.
Rousso
Why don't you say what you did for the record.
Fay
I wanted to make my position clear, and I wrote this memo to the board of NPF, which basically stated that I felt that the process for hiring the director should be an open one, that it shouldn't--not these words; I'm paraphrasing it--but that it shouldn't be a shoo-in for anybody, that it should be open to anybody in the disability rights movement, and that people who were involved in the movement should certainly be given the priority. I said that I had looked into hiring practices from the point of view of the Equal Employment Opportunity Office [sic; Commission], EEO--
Rousso
C.
Fay
Right. That one. I had called them and I had gotten their advice and recommendations, which supported my feelings. At the time, they wanted to continue the project development committee and have that committee be responsible for hiring and--oh. I'm not sure where Elaine was, frankly, but certainly the three people I mentioned were
Rousso
Distinction.
Fay
Or distinction. And so I also said, which interestingly enough, ended up being a requirement for all the ILCs anyway, that CIDNY, when it was able to, should incorporate on its own and be totally separate from the chapter and have its own board and everything else.
So the memo, I felt, was important to set straight what my position was.
Rousso
Were you the chair?
Fay
I think I was chair of the committee. In any event, I had been a previous president of the chapter, so for whatever influence I had, I felt that it was important for me to be clear about what my position was. Wherever it fell, it fell. I knew that there were going to be people who were not going to be happy with me, and indeed that was true. There were lots of feelings hurt on both sides. People didn't really talk--I think ultimately we did. I mean, I know we did. I certainly spoke to Julia and Fran and Roxanne, but it took years. It took quite a few years before that would happen.
Rousso
How did the issue get resolved?
Fay
It got resolved by--well, there was more support for Pat, and he ultimately got hired.
Rousso
Whose decision was it, the board?
Fay
It was the board's decision. Yes, it was the board's decision. I can't recall everybody who was on the board at the time, but it definitely was the board's decision. And I really do believe it was the right decision at the time. And that was the beginning of CIDNY. And it's now celebrating its twenty-fifth--
Rousso
Right. So I've heard.
Fay
--anniversary.
Local groups disband with formation of CIDNY
RoussoWhat do you remember about the early work of CIDNY, how it started? Pat got hired pretty quickly?
Fay
Well, it was several months.
In the interim, did anything happen or did it only start when he--
Fay
It started pretty much when he came on board and started the attendant care piece. Obviously, that was an important part of the grant. And then it developed from there, the whole peer support concept of IL [independent living]. And then he hired others, eventually. It's funny: The beginning years, it was like--CIDNY got started, and that was kind of it. I wasn't involved in the chapter, which ultimately disappeared because CIDNY took over--
Rousso
Talk about what happened with the chapter.
Fay
The chapter disappeared because the activity of CIDNY, the board of CIDNY were a lot of the same people.
Rousso
How quickly did CIDNY separate? Pretty quickly?
Fay
Yes, within a year, I think. Within a year.
Rousso
And many of the board members--
Fay
Became board members of CIDNY.
Rousso
I see.
Fay
The chapter wasn't--there was no energy for it; there was no real--it was kind of like it had lived its purpose. It kind of accomplished its purpose and went away, like ACCD in a way, good-bye. And then there were other centers. CIDNY was the first center in New York. Then other centers began to be funded.
Rousso
Let me ask you: Did Julia and Roxanne and--
Fay
Fran.
Rousso
--and Fran--did they continue to stay in CIDNY, in the board, or did they disappear?
Fay
I think they disappeared. They disappeared, pretty much. They did their own--they went off. I know Fran ultimately wrote a book on traveling in Europe, I think.
Rousso
Right.
Fay
Of course, Julia worked for the New York State Advocate's Office for many years. She staffed the office in the city. And Roxanne worked for the advocate's office, so they worked together for a very long time.
Rousso
I see.
Fay
And Elaine Pomerantz worked--she ultimately left New York, but not until years later, and I think moved to Israel. And Carr stayed involved in CIDNY. Carr, I believe, was on the board.
You didn't go on the board.
Fay
No, I didn't go on the board of CIDNY.
Rousso
Why?
Fay
I'm not sure what I was doing at that time. Things were happening, I think, at work for me, and--I'm not sure. There was still ACCD.
Rousso
Right.
Fay
I was very involved in the coalition. So I went in other directions.
Rousso
In terms of NPF, when do you recall it disappeared? Do you recall?
Fay
The chapter? Probably about a year after CIDNY.
Rousso
CIDNY started in 1977.
Fay
Right. I think it actually started in '78.
Rousso
Right. The real start.
Fay
I would say the chapter disappeared by '79. There was no chapter. It was pretty much gone. I know that I got involved also in an organization with Carr and Phyllis and Shirley Morgenstein and Cynthia Goode and Joan Heitner and a few others, called People with--PDNYC, just like the Police Department! People with Disabilities in New York City. That organization really worked mostly on developing position papers and sort of training--educating, not training, but education of younger people with disabilities. Or it did outreach to groups of disabled people not connected to--
Rousso
To the movement.
Fay
To the movement, right, or to anything else.
Rousso
When did that start?
Fay
It started right around the same time that I was not--in about '79, '80, something like that. We spent a lot of time developing position papers, which we felt was important. I think I gave some of them to you.
Rousso
Right.
Fay
We did a workshop. I know we did one workshop, anyway, for people who were residing in long-term care facilities, on 504 and the human rights law. So I was involved in that for several years, along with ACCD.
Rousso
Right. How about the Congress?
That disappeared. I think that disappeared around, again, the beginning of the eighties, about '81, '82. Basically, it existed on paper, but it didn't exist any other way. People paid dues, and that was it. It wasn't doing very much other than be a member of ACCD and have three votes, which was important, because you wanted as many votes as you could when you went down there, and so you didn't want to disband the organization. But for all intents and purposes, it wasn't really functioning on the local level anymore.
Rousso
Was this something you had started?
Fay
Yes, me and others: Phyllis and Julie Goldberg. Who else? I remember Phyllis, Julie, Denise McQuade--
Rousso
Did it start in the early seventies?
Fay
No, that started after. I would say that started around '75, '76, something like that. It wasn't long lived. It was, again, a few years.
Rousso
That's right. It was an attempt to build a coalition.
Fay
It was an attempt to build a coalition. There were local members that were involved, local groups that were members. It never made it to the state level, even though we said we were a state organization. We weren't successful except for, I think, one group in Syracuse and another group somewhere else. But we weren't really successful at organizing the state.
Rousso
Tell me again the name.
Fay
Congress of People with Disabilities.
Rousso
Anyhow, by the time CIDNY came along, the Congress--
Fay
Kind of not there anymore, right, right, right. Yes.
The vision for CIDNY: services and advocacy
RoussoIn terms of CIDNY, before we move on, could you talk about, did you have a vision--did your group have a vision of what it might do?
Fay
Yes. The vision--it's interesting to me now, but the vision that I certainly had, and I think the group had when writing the grant was to have a center where people could come in and receive peer advice, benefit advisement, basically the services of an ILC, but specifically where they could get assistance with attendant care, where we would be able to help them find attendants, work with the local human---it's not human resources--HRA, no--
Rousso
Human Resources Administration.
Human Resources Administration, right, to get hours approved for people who needed the care. I'm talking about really early on, before home health services were developed to any extent. So really it was just to develop the whole program of attendant care for people with disabilities. To the extent that it was successful, and it wasn't easy--I know it's not easy to do; it's a difficult program--it did that. It still is. I mean, it still has that component.
Rousso
It's interesting. I never hear too much about that piece.
Fay
I know, I know, but they still have it. They still do the attendant piece. But obviously they focus on a lot of other things as well. They became a full-fledged ILC, which is fine. That was--we had that. But we didn't have in mind that the attendant piece would disappear somewhere in the woodwork, but now everything is sort of coming full circle because of the Olmstead decision. Independent living centers are now going back to square one, which is where they started out and took off, which is their main purpose, which was to ensure that people remained in their communities. That's really what independent living was all about, was to give people choices so that they would not end up in institutions.
Now people are sort of coming back to that, but for some people it's not coming back to it, it's going there for the first time. But obviously, for those of us who were there twenty-five years ago, it's coming back to it.
Rousso
I know you weren't so involved in CIDNY once it got off the ground. Did you have a sense of how--and you talked a lot--about how it affected the disability community in New York City?
Fay
It became, I think--you know, what comes to my mind as a landmark, but I don't know if it's a landmark, but I think it will always be sort of associated historically--whatever happens to CIDNY in the future, it has lived through many iterations, many different kinds of directions, but the perception of it has always been a basic advocacy center, I think, unlike some of the other centers, which are perceived as very service oriented.
CIDNY has not been. CIDNY has really been much more, has been viewed much more the advocacy program. I think good, bad or indifferent, people in the disabled community in New York City relate to that program, sometimes by bashing it because it's not doing what it needs to be doing, but it is there. Everybody who is sort of involved in anything in the community knows about CIDNY.
Rousso
Like a guidepost.
Fay
It's like a guidepost, yes. That would be probably a better description of it, yes, exactly. It's kind of like DIA in a way, because DIA had been through all these--has stuck around for all these years, to its credit. And so I think that CIDNY is the same thing. Marilyn [Saviola] was there for, what, thirteen or fourteen years? It had one--Pat was there. I don't even know if there was anybody between Pat and Marilyn.
Rousso
How long was Pat there?
Well, let's see. Marilyn was there fourteen years. She left, say, three years ago. So say seventeen years. Seventeen and twenty-five. He was there probably about six or seven years.
Rousso
Were there particular characteristics of him that made him very well suited for the job? You were such a strong advocate for him.
Fay
His philosophy about disability rights. None of us really had, or very few of us really had any management experience, managerial experience or administrative experience, so you're talking about running an agency--I mean, we didn't have that background, and Pat didn't, either. He went into it--
Okay. You were saying he had no administrative experience.
Fay
Right, and really, none of the directors did. Very few of the beginning directors had any of that experience. But Pat did have a history in the disability rights movement. Pat had presented testimony that people had heard. Pat spoke out. Pat was very vocal in his positions.
Rousso
A strong advocate.
Fay
He was a strong advocate, exactly. He was a strong advocate. He wasn't hesitant about saying what he thought to a politician. He didn't hold people, like politicians or service providers or whatever, in any reverent--you know.
Rousso
Right. He was not afraid to speak.
Fay
Exactly. He was not afraid of telling people the way it was. And so I certainly felt that he was more suited for that kind of an agency, for that kind of a program. And I still think he was.
III. Later Career, Husband's Illness, Phyllis Rubenfeld
Director of Yonkers Independent Living Center, 1983-1986
Okay. So let's talk a little bit about how CIDNY served as a model for other independent living centers in New York.
Fay
I think probably the way that Berkeley or CIL in Berkeley was the model for CIDNY, which it was, I think that CIDNY served--and I think in a way, it still does. I'm not sure whether it still does, but certainly I think that it was a model for other centers to follow, initially. I'm not sure that that's true now. I don't know if it was true five years ago or ten years ago, but initially it was. Then, independent living centers developed pretty much at the whim of a particular legislator. It was kind of like--John Brown in such-and-such a part of the state has an independent living center, so I should have one, too. So legislators were really going to get the money for centers in their particular areas.
Rousso
Is that how it happened in New York State?
Fay
That's how we ended up with thirty-six of them, which we have now.
Rousso
In New York State?
Fay
In New York State, right. Thirty-six or thirty-seven. I'm not sure which.
Rousso
So it was political.
Fay
It was political. It was politicized, they were politicized, in a way. The one, actually, in Yonkers, which is the one that I was first director and got the program developed and separated from the parent agency, was actually--the money was--let me put it this way. John Flynn was the senator in the area in Yonkers that I lived in and still live in. He very much wanted to have an independent living center in his district. He was very disability friendly. I'm not sure what his background is or why he was sensitive in this area, but he was. He pushed for a center.
Did you know him, or did he know you?
Fay
I met him. I had talked with him about different issues. I didn't know him well. That wasn't the reason that I actually interviewed for this job as the first director. Somebody just told me it was available. I wasn't looking at the time. I was working for the World Rehab[ilitation] Fund. I just did it. I just went. The grant was actually awarded to the Yonkers Office--at that time, the Yonkers Office for the Handicapped, and so I interviewed with the director of that office, who was doing hiring and she was managing the grant to establish this center.
Rousso
Do you know who wrote the grant?
Fay
Yes, her name was Felicia Volkman. She was the parent of two disabled boys and the director of the office in Yonkers.
Rousso
Director of the Yonkers office--
Fay
For the Handicapped, right, in Yonkers. And she was the one who actually wrote the grant and worked with John Flynn to get it, to get the funding.
Rousso
What was the funding source?
Fay
The state. This was New York State Voc[ational] Rehab, Department of Education, Voc Rehab. We didn't have any federal funds. The first center--I mean CIDNY was federal funds. The first five centers were actually all RSA funding, Rehab[ilitation] Services Administration funding. I think all of them still do have a portion of their budgets, a portion of their funding from the federal--you know, from the feds. But the rest of the centers are state funded.
Rousso
I see.
Fay
And the rest of the funding for those original centers are state.
Rousso
State funded.
Fay
Yes, state funding.
Rousso
So she wrote the proposal for the grant.
Fay
Exactly. She wrote the proposal, and it got funded, and then she was the one who did the hiring, the recruiting and the hiring. As I said, I interviewed for the position, but it was not something I sought; it was something that a friend of mine said, "This is happening," so I thought, "All right." I thought of it then as a way of bringing the various pieces together under one umbrella. I was working for the World Rehab Fund at the time, which was really different from--it's different from anything else that I had done career-wise.
Rousso
Let's take a little time and talk a little about how you got there, because you had been in Rusk.
Right. The interesting thing is that it was a program that actually was housed in Rusk, and Dr. Rusk--
Rousso
Oh, it was?
Fay
Yes. And Dr. Rusk was the president of it, of the World Rehab Fund. He started it. So it was still connected to Rusk. Essentially, it was a program to provide training for people in basically third-world countries, training, some of it in rehabilitation medicine, disciplines, occupational therapy, physical therapy, and medicine, physical medicine (doctor stuff).
They had a very large prosthetic component to their program, so they taught people to make prosthetic limbs in these countries. That was a really large population of people with missing limbs. I guess land mines, stuff. I'm not sure. And they raised money, so basically a foundation that fund-raised and worked with many of the UN [United Nations] programs as well as government. [Sirens approach, getting increasingly loud.] You know, the AID. I can't remember what that stands for.
Rousso
The Agency for International Development.
Fay
Development. Right, exactly.
Rousso
Right.
Fay
At that particular time at Rusk, I had been working for the clinical director. It was really all medicine. I had worked for physicians. I had a lot of patient contact. And I liked it. But things were changing at Rusk, and my position really didn't exist anymore.
Rousso
Oh, I see. Well, you said you were working for someone who passed away. Did they replace him?
Fay
Not really.
Rousso
I see.
Fay
Not really.
Rousso
They changed the structure.
Fay
Right. You know what was happening? It was kind of like the sands were shifting. The sand dunes were cropping up in different places, you know? So I wasn't in the same position that I had been. I think people were trying to figure out what to do with me.
Rousso
I see.
Fay
So I needed to think about what I wanted to do as well. The World Rehab Fund--Howard Rusk, Jr., Dr. Rusk's son, had just taken over as its, I think, president. I had always gotten along rather well with him. I don't recall whether I had asked him or he asked me, whatever. I interviewed with him, and I got the position as his executive assistant. It was an interesting year, a very interesting year. I met different--
Do you recall was this 1982?
Fay
This was just before I left, so I would say it was 1982. I left in '83. Yes, so I worked for about a year for World Rehab Fund. There were some things I learned. I learned about the U.N. and some of the international programs. I also developed skills during that one year. Unlike other people I worked with, he wanted me to be part of just about every meeting that he had with anybody. And so I would make notes. But at the same time, I was also part of the discussions, and so it was interesting. It was a way for me to learn.
He and I didn't get along super well, at least not in those roles. I was not terribly happy after a year or so. So when my friend said, "This came up. Why don't you--?" As I said, I hadn't been looking, but I thought, "Well, there's nothing to lose."
Rousso
Right.
Fay
And so I interviewed, and that's how I got this position. But the other interesting thing is, Harilyn, that when I worked and changed my job to World Rehab Fund, that program moved into the executive suite, which was where my office was, and I never even--I mean, I went from one job to the other without moving my desk.
Rousso
I see. That was handy!
Fay
Yes! It was a transition, but it really wasn't a transition, you know? I was doing a different job, but I was with the same people basically and in the same place, so it really didn't take a whole lot of--but this was moving out of Rusk at that point and taking a position very different than any that I'd had up to that point.
Rousso
That must have been a big transition.
Fay
That was a big transition, and that was a big risk, for me. It was taking a big risk. Rusk had always been--Rusk was my first job. I mean, I worked there for over twenty-five years, so it was really--I still say that I kind of grew up there, but I did. I really learned an awful lot from the people there in terms of administrative skills and whatever.
So when I took over the Yonkers center or got that position to develop the center, it really brought together kind of all of the skills that I had acquired over time, not the least of which were the organizational skills that I acquired from the disability rights movement and the information, the knowledge that I had.
So it was a very logical thing for me to do, rational thing for me to do at that time.
Rousso
Were you the only staff when you started?
Fay
There was one other person, who was the program director. Her name was Susan Turner. You know Susan.
Rousso
Right, I know Susan. So she started from the beginning, too.
Yes, she started from the beginning as well. So Susan and I basically brought our interests to the program, and so there were a lot of disabled women's issues that we focused on.
Rousso
I remember.
Fay
You remember that? Yes.
Rousso
Did you hire Susan, or was she also hired by the person who hired you?
Fay
Felicia Volkman had interviewed both of us, and she had to make the decision which one of us would be the director and which would be the program director. She wanted both of us, so essentially she hired Susan. I mean, Susan and I met, but I think it was pretty much perfunctory at that time.
Rousso
Right. So maybe talk about some of the major accomplishments when you were in that position, the way you see it.
Fay
The real major accomplishment was moving the center away from under the auspices of the Office for the Handicapped and getting our own space. I mean, all the things that creating and developing a program, that go into doing that, which I must say I do enjoy: recruiting board members, getting the center incorporated.
Rousso
Had that always been the plan, to have it separate?
Fay
Yes. It's a requirement, actually. All the centers in New York have to be autonomous within a year. They have to be independent of sort of the parent agency within a year.
Rousso
Within a year.
Fay
Yes.
Rousso
So it was quick timing.
Fay
Yes, yes, it is quick timing. It really is. At the same time, you need to be providing the services, as well. Susan was very helpful. She's a social worker, and she kind of developed a lot of the service pieces. And I did the administrative, advocacy, all the new stuff.
So the biggest accomplishment, Harilyn, was really getting it incorporated, getting the board of directors, getting the space, moving out. And I would say also we got additional funding beyond the money from the state for housing projects, which at that time was about $25,000, to establish a housing database for consumers of IL services.
Rousso
Was this the first independent living center in Westchester?
Fay
No, the Westchester Independent Living Center was there prior to the Yonkers. It was about a year--that's what I mean about politicizing--it was about a year before the Yonkers center was established. They had funding, and they're in White Plains, so--they have to be in White Plains, by virtue of their contract.
Is that very far from Yonkers?
Fay
No, and that, too, was--you know, it was tricky because you have another independent living center. It's called the Westchester Independent Living Center, and the center that I was directing was the Yonkers Independent Living Center, but I had no intention of restricting programs to just Yonkers. So Joe and I, who had contact--Joe Bravo, who's the director of the Westchester center, still is--he and I had known each other briefly, very superficially, from some of the National Paraplegia Foundation days.
So I met with Joe, and I remember clearly, I really do. I knew that I needed to meet with him, and I knew I needed to establish boundaries and a tone for working together, because this could make or break--for both of us, really. So I met with him. We had lunch. I basically said that I needed him to know that I was not restricting services to just Yonkers, that I would be certainly providing IL services to the county, just as he was, but that what I hoped we would be able to do would be to complement our programs, so that he wouldn't be doing the same things or competing, which would have been silly because we didn't have a whole lot of money.
Joe was fine with that. It was like "Don't step on my toes." I said, "It's fine with me." So we really, really worked very well together. We worked very well together. We supported each other's programs, and we were friendly. We really were. And we are to this day. He asked me, when I left the center--he waited about a year when I resigned as director. He waited about a year, and then asked me if I would be on his board. [Laughs.]
Rousso
Well, that's a compliment--
Fay
Yes.
Rousso
--to the working relationship.
Fay
Absolutely.
Rousso
Were there ways that you were very different in terms of the kind of services?
Fay
Yes, I think. I mean, I think that--as I said, Susan and I did a lot of workshop kinds of activities. Like, we did a workshop on issue things, like "Alcoholism and Disabled Women," or--I'm trying to think of some of the others. A lot of it was disabled-women focused, because that's who we were.
We also did--and Joe did things like wheelchair repair and a lot of the peer stuff, which we did, too, but he was--you know, the basic independent living services. He hadn't developed a particular niche that I recall, all right. But we sort of developed the housing piece, because I thought that was important. And we got a consultant. Joe never did that. He didn't go into that aspect of it.
So his center now has grown tremendously, but he was very supportive of me. I appreciated that. So that was good.
Rousso
You stayed there for two or three years?
Three years, about, roughly, give or take.
Rousso
And then what made you decide to--
Fay
To leave? It's interesting. It was the first time that I had worked out of Manhattan, and it was also the first small agency that I'd been involved in.
Rousso
That's right.
Fay
I had always worked for major institutions. That part of it I didn't like. I missed the interactions with a varied group of people, I missed the big cafeteria, where you could just go and see this one, that one, the other one, or call somebody up in another building and say, "Do you want to have lunch?" That was totally not there.
I also missed being able to pick up a phone and call another department if I had a question. For example, like human resources. If I had a question about an employee at the medical center, I could pick up the phone and ask somebody at human resources, "How would you handle this?" "What is the regulation on that?"
At the independent living center, you were chief cook and bottle washer, and you're it. You're all the departments. You're everything.
Rousso
That's a lot, a big burden.
Fay
It's a big burden. And I had a lot of sleepless nights as a result of that. Every time they took the van out--we had a van at the center--so every time we took the van out on a trip and picked up consumers to go somewhere, I was a wreck until I knew that van was back in the parking lot. I was thinking, "What if it breaks down? What if this? What if that?" Oy, oy, oy, oy, oy.
Also the center was established. It was in space. It was autonomous. It was independent of the Office for the Handicapped, and this job at Mt. Sinai sort of came up.
Rehab administrator at Mt. Sinai, 1986-2000
RoussoHow did that happen?
Fay
I had actually--I was out, actually. I had taken a leave from the center because I fell, and I fractured my legs, so I was out for a while. During that period, I was at NYU [New York University] [Medical Center] for some of the rehab after that fall. I found out that one of the physicians I knew was actually leaving Rusk to go to Mt. Sinai to develop their rehab program. So I talked to some people who were going with him. One thing led to another.
I ended up going with him. We weren't quite sure as what, so he kind of said, "Assistant." I ended up within a year being the administrator for the department at Mt.
Sinai. And so I was back doing rehab. I was also back doing what I liked in terms of developing the programs sort of from scratch. It was good.
Rousso
What kind of programs?
Fay
They did not have an inpatient rehab program. Actually, the only thing Sinai had was a physical therapy and occupational therapy outpatient service. I'm sorry, they had therapists that went into the hospital for people as well, but they didn't have--they had services, but they didn't have a program. It wasn't all put together.
Rousso
So you literally helped to develop all that stuff.
Fay
Right, to a 75-bed program, inpatient program, the spinal cord injury program, TBI (traumatic brain injury) programs, the accreditations, all that stuff. So yes, I was involved in hiring all the staff and developing the policies and procedures. You know, all that.
Rousso
Wow. It sounds very responsible.
Fay
Yes, it was a very, very responsible position. It really was. I was sort of like, "Am I really doing this?" Yes. So it was a very responsible position, and I loved it. I loved it. I must say I've been fortunate in terms of my employment. I have really been kind of in the right places at the right times for me. It's worked out so that I have had a progressive career, and one that made sense as well, with my interests, with the rest of my life, kind of.
When I started working at Sinai, I pulled back from a lot of the disability rights stuff. I was still involved, but not to the degree that I had been before. The coalition, the ACCD had dissolved at that point.
Rousso
You went to Mt. Sinai--when was that, in '86?
Fay
Eighty-six, right.
Rousso
And you stayed there till?
Fay
Till 2000. That was two years, actually, that I had left. I was there for fourteen years, which is a long time in the history of jobs in this day and age. [Laughs.] Yes, I never could understand keeping a job for two years and then moving on to another one. It's kind of like--you know--I don't know. You just get started in two years, and then you're off to something else.
Rousso
That's right, that's very true.
Fay
But it's a different--
Marriage and husband's illness
RoussoSo you were not so involved in disability activism during this period?
Fay
Not to the degree that I had been.
Rousso
Was that just a practical matter, that you had a lot to do?
Fay
I felt that I wanted a different focus. My husband was, at that time, also--his disability had progressed quite a bit because he had MS [multiple sclerosis].
Rousso
When was that diagnosed?
Fay
That was diagnosed quite a while before, but he was not--but his disability didn't really become an issue for us until we were married, I suppose, about ten years, something like that. But at that particular time, in 1986, he was beginning to require more help. He was getting help in the house, and I guess my need to be--just to be more available. The disability rights stuff, for many, many years, between that and a job--you know, it had been almost a super twice--I can't even say full-time. It had been my life.
Rousso
Over full-time--
Fay
Right, right.
Rousso
--totally consuming.
Fay
Totally consuming. Totally consuming. In the beginning, it was difficult because Lou, he didn't, I mean, I didn't even understand it. It was the first time in my life that I had been so involved in something, and passionate about what I was involved with, and the intensity of it was just incredible. It was almost--I was going to say it was almost addicting, and it was. It was a total--you said all-consuming, and that's what it was: it was all-consuming. It was a commitment. It was a total commitment.
Rousso
You had a lot of passion.
Fay
Right. There was a passion; there was an excitement. I couldn't think of not doing it. I had to keep doing [it]. As a result, Lou knew what I was doing and certainly supported it, but over those years--in the beginning, it was problematic because I was not available. I was constantly--every night of the week, there was something to do. There was a meeting or something to do, practically every night of the week except maybe weekends. And even then, we socialized with people who were in the movement.
We bought a house. One of our first parties was to bring everybody in. We talked about developing this big coalition. This was, like, '72 or something, you know?
Rousso
When had you gotten married?
Fay
Sixty-five, 1965.
You had met him how?
You met him [her husband Lou] at a friend's wedding?
Fay
Right. In 1960. A mutual friend's wedding. And we were friends, really, he and I and this friend, and another friend. This was a group of us who'd get together periodically and hang out on a Sunday afternoon, that kind of thing.
Rousso
And he was not disabled.
Fay
He was not disabled, no. He was a podiatrist. We had sort of a medical background kind of thing in common. He would come over to the house and spend time with my family and have dinner with us. He absolutely adored my family, and they loved him, as well.
[Phone beeps.] Oh, that's my phone. I'm sorry.
[tape interruption]
Rousso
Lou, he was a friend of your family.
Fay
Right, he loved my family, and it was a big part of our relationship, was his relationship with my family. My grandmother lived with us, so there were always a lot of people over, friends and my mother was one of five siblings, and so there were a lot of people, and Lou did not have that in his family, so he was very enamored. I always used to say that he basically married me more for my family than he did for me. Certainly, it had a lot to do with it. [Laughs.]
Anyway, we were married quite a number of years before his disability, his MS became evident. And then, as I said, by 1986, I guess it was, about '85, '86, he had to give up his practice. He was not working anymore, and our roles were beginning to be reversed. He was at home. He was actually a house-husband, and it was fine. He didn't resent this. It didn't bother him. He accepted it, and he was fine with it.
So he managed all of the marketing and whatever had to be done with the house, you know, the dry cleaning and all that stuff, which was great because it really made it possible for me to work and still do a lot of the disability rights stuff as well.
Rousso
This was in the early eighties that he quit his practice?
Fay
He quit his practice in the late seventies. It was more in the seventies. And he tried some other things right after that, but really it didn't work. It didn't work.
Rousso
Before that, when you were very involved in the disability rights movement--
Fay
Right.
Rousso
--was that an issue?
It was an issue. It was an issue. It ended up not being an issue through just communication. I was in therapy, and we were just--I think when the realization for both of us--you know, we both realized that this was enhancing my life and Lou's life as well, since I was happier, obviously. And it wasn't taking anything away from our marriage; it was adding to it. So it was not--it was no longer threatening for him, and it was wonderful for me because I had his total support. And there were things--I'd come home, and he would be--some of the demonstrations that actually got coverage--he had seen me on the news or something, and he was actually proud of being a part of it, sort of the backseat driver kind of thing, you know? But without his support, obviously I wouldn't have been able to do this either. So he was very supportive.
He liked to tell me repeatedly, every time he'd see a curb-cut--I mean, this was Lou's associations. He'd see a curb-cut, and he'd think of me. These were the things that were--
Rousso
These were part of your work?
Fay
Right. Right. And he was really proud of being a part of it, through me. And that was great.
Rousso
Let me ask you, and if it's too personal, you can stop us: Was the fact that you had a disability at all an issue for his family?
Fay
Yeah! It was a big issue for his family. The fact that I was disabled and I think secondarily that I was not Jewish (Lou is Jewish, and I was Catholic)--but yes, the disability was a huge issue. They did not come to our wedding. They absolutely made it very clear that they did not approve of his marrying me. They didn't approve of our relationship; they didn't approve of him marrying me. As a result, I didn't meet his family for about two years after we were married, when I met them.
Rousso
Uh huh.
Fay
I was angry. I can honestly say that it had nothing to do with me. I was angry because I couldn't understand how they could treat him that way. I mean, how could they hurt--I still don't understand it! How could they hurt their son like that? That was alien to me. My family--I mean, Lord knows, my parents didn't approve of everything I did, but I never had the sense that they would totally reject me like that. So I never, never understood that.
So even when I met them afterwards, like in two years or whatever, we never--how can I put it? We never really had a--what? There was always a piece of resentment on my part, and I think they were uncomfortable. They were uncomfortable with past behavior. They were uncomfortable, so they really didn't understand disability. It was that something they were ashamed of, and consequently they were ashamed of their son, who became disabled.
They moved to Florida to get away. They moved to Florida to get away. And so they did. But Lou had an incredible way of--unlike me, who can't let go of anything [laughs]--he had an incredible way of accepting people where they were.
That's amazing.
Fay
And so he did that with his parents. He really did. That was fine. That was wonderful.
Rousso
Was he the only child?
Fay
No, he had a brother. He had a brother, but he and his brother were sort of estranged. Very, very different people. Extremely.
Rousso
Anyhow--
Fay
Anyhow.
Rousso
You said that when you went to Sinai, you needed to give more and more care to Lou--
Fay
Right.
Access issues at Mt. Sinai
Rousso--so that the disability movement would have been more of a distraction.
Fay
Right. Exactly. And in truth, in the eighties there wasn't the same energy. It was a very different time. The seventies was, I think, the peak of all of this. To some degree now, there's a lot of energy again, but the eighties were very quiet years, and the nineties too, for that matter. A little bit more in the nineties, but the eighties were really quiet. I think that in general, there was very little movement anywhere.
So consequently, I was involved with certain local things. Phyllis and I were involved with local mostly education, special ed stuff, and the idea of public law, P.L. 94-142, which was the 1975 thing, but then later, of course, it became IDEA [Individuals with Disabilities Education Act]. And other kinds of--but local.
I also became--I think I was the only disabled person in a wheelchair, who used a wheelchair, at Mt. Sinai, out of something like 11,000 employees.
Rousso
Oy, yoy, yoy.
Fay
No small wonder, because that campus was totally--
Rousso
Inaccessible?
Fay
Oh, it was terribly, very inaccessible. Awful.
Rousso
How did people react to you as a co-worker or as an administrator who was hiring?
Fay
Interesting. Well, it was sort of like--Well, that's okay because she's the administrator of the Department of Rehab Medicine. If I were the administrator of Oncology, that
Rousso
Perfect.
Fay
Perfect! So you wonder why there were no disabled people working at Mt. Sinai.
Rousso
Right.
Fay
So of course, one of the first things I did was to get to know the person in the human resources department who was responsible for implementing 504 and making sure that the institution was in compliance. I don't think I gave any of that stuff to you, but, you know, memos to them about--there were turnstiles in the cafeteria. You know, things like that that were just totally outrageous.
Rousso
Right.
Fay
So we hacked away at it, a little bit, a little bit, a little bit. Of course, their big answer to everything was, "We're building the new hospital, and that will be accessible." Well, yes, it ended up being accessible, except for the bathrooms that were not totally accessible, and little things. But basically, with the new hospital and the reconstruction, most of the institution is accessible now.
I was on their ADA subcommittee before I left, with some issues that the hospital was facing, noncompliance.
Rousso
Was the man who you went to work with--what was his name?
Fay
Ragnarsson, Kristjan Ragnarsson. He's still there, the chair.
Rousso
Was he supportive of all your efforts to make the hospital accessible?
Fay
Well, he was supportive. [Laughs] I can say that he--he was supportive, but I can't say that he did everything that I thought he should do. (Is that diplomatic?)
Rousso
That was very diplomatic, very good. Okay, I won't ask any more questions about that.
Struggle to keep husband out of a nursing home
RoussoSo what made you decide to leave there?
Fay
Well, again, a lot of it had to do with Lou. My father had moved. My mother had died in '88. My dad moved up with me, to live with us. His health was failing. You know, he had bypass surgery. At that time he was about eighty-eight. And so I found myself, between Lou and my father, needing more time, so I decided to leave Sinai, because
I just felt like I wasn't giving anything the time it needed. I wasn't happy with the job that I was doing; I wasn't happy with what I wasn't able to do at home, and so I just never felt satisfied with anything. I decided to leave and work part time in Westchester. Joe Bravo, who was the director of the Westchester center, asked me if I wanted to take on a position that they had just--they had just signed a contract.
Rousso
A contract?
Fay
Right, with the county to administer or be a liaison with the Concepts Program here, in consumer-directed personal assistance. They needed somebody to be that liaison and do outreach to the community and the providers in Westchester to make the program grow, or at least to make it have a presence in Westchester, because the vendor agency, Concepts, was in Manhattan, and there was really nothing going on in Westchester.
So I said yes, and that's how I started working for the center. I resigned from the board and became a staff person.
Rousso
So is that still your job?
Fay
That's still my job, yes. Now, of course, it's gone also to coordinating the Olmstead, activities around Olmstead or the nursing home transition, working with people in nursing homes and institutions, to come out, and also trying to divert people in hospitals or in the community from going in. That's a whole systems change thing. It's a big challenge, but, again, it's really bringing the disabled community together again, I think, in a big way. I enjoy it. I love what I'm doing, I really do. And I'm very passionate about that. I feel that Lou, who lived the last ten years of his life on a ventilator, at home, with 24/7 help until last October--but he kind of exemplified what can happen and what can be. But the struggle and the financial disaster that we had to--
Rousso
How did you manage that?
Fay
By going into debt. I mean, over my head. It was the only way. And fighting every single day with either insurance companies. I sued Oxford [Health Care]. Lost, appealed. Lost. Nobody gets it. I found the most incredible attorney, who took this on, an insurance attorney who took this on and ended up doing it pro bono, for almost $100,000 worth of services.
Rousso
Wow.
Fay
Yes. Yes, Harilyn. I mean, that's how committed he was to what we were trying to do. But it was still David and Goliath. Oxford would show up with these huge law firms. And also these judges, who would come out of their chambers, and I knew immediately that he was not going to see this, he was not going to get this. And he didn't. And they didn't.
Rousso
So ultimately you lost?
We lost. Ultimately we lost. And it's over now, believe it or not. It was from 1995 until just this past--about a month ago, it finally was over. What's that--seven years. And what was over is you have a certain amount of time to appeal. The only other place we could have appealed was the Supreme Court, and my lawyer didn't have the resources to put something like that together. Chances are, we wouldn't even have been accepted anyway. So that was the end of that.
Rousso
Wow. That's a lot to go through.
Fay
That was such angst all the way. I mean, really.
Rousso
You were suing Oxford to get home attendants?
Fay
I was suing Oxford--Oxford paid for part of Lou's care initially, in the very, very beginning, and then they said that it was not part of the contract; it was not a covered benefit. And it was a covered benefit, and then they would say it was not a covered benefit; it was that Lou needed a different level of care, and he should have been in a nursing home.
We fought this on every single level you can possibly think of, Harilyn, and the most frustrating thing in the world about this was that it was clearly about money, and nobody said that, so you knew what you were fighting, but you couldn't fight that because it was never--
Rousso
Spoken.
Fay
--spoken. I mean, my attorneys brought copies of an e-mail referring to--an inter-office e-mail in Oxford, referring to Lou as the six million dollar man. And yet even that didn't do it. So that was the most agonizing part of it, is that I couldn't get at them. Couldn't get at them. So you can only--
But it was like I couldn't not keep going with it. I just couldn't. Lou was not going to be in an institution. No matter what. If both of us ended up literally on the sidewalk, that's what it would have taken. But he was not going into an institution.
So what I'm doing right now is very important to me.
Rousso
Yes. I can see that.
Fay
Yes.
I guess that brings me up to where I am.
Reflections on changes through the years
RoussoYes. Well, we will talk a little bit about Phyllis [Rubenfeld], but before we do that, maybe you can reflect a little bit on--since you've been at this for thirty years, maybe
Fay
I think things have changed. Obviously, things have changed. I think in terms of thirty years ago, just the things that reflect the change: you see access symbols; you see push-button, automatic doors; you see telephones with the amplifier symbol; you see textured curb cuts for people who use wheelchairs and who are blind, so they know it's a curb cut. There's just an enormous awareness, I think, that there are people with disabilities living in our community.
There is certainly more accessibility. I mean for people with all kinds of disabilities. There are more people out there. There are more disabled people out there. Schools. I mean, I go into any of the colleges now, and I see young people in wheelchairs, with guide dogs, all over the place. I mean, I was the only one in my school, and I would say that thirty years ago that probably was still the case.
So I think that we certainly have made enormous progress. I think the things that haven't changed are attitudes. Well, I shouldn't say that. Attitudes have changed, but I think what's interesting is that people now, because there are laws that require the people to do certain things and not discriminate against people with disabilities, there's a certain backlash.
I think that people thirty years ago, who had ramps in their establishment, if they put in a ramp, they did it because they were basically decent people, or they may have thought this is a good economic investment, but they didn't have to do it. They did it out of some other motivation. That's a very different attitude on the part of that person, when you then go to their establishment, than the person who did it because the law said they had to do it.
Rousso
Right.
Fay
So there is a certain backlash. And I can feel that. I know that from going into some place that's friendly or that would have had the ramp there anyway, there's one kind of feeling. But if I'm going there, into a place that's accessible but accessible because they had to be accessible and there's a certain attitude about "I had to spend all this money for you?"--you know, that kind of thing. "Like you really needed to be here?" You know, "You have to be everywhere?" That kind of thing. It's subtle, but it's there.
I remember once going to a meeting with Phyllis, with the--I'm going to have trouble with his name. But he was head of the Urban League at the time, an African-American man. Anyway, I'll eventually get his name. It'll come from wherever that [brain] cell is. Anyway, Phyllis and I went to talk with him about basically the disability rights movement in relation to the civil rights movement and maybe getting some suggestions from him or insights from him, whatever.
He said, about attitudes, that he had to develop a kind of "I don't care whether you like me or not, as long as you give me the job the law says you have to give me." In other words, "Treat me equally. The law says you have to treat me equally. Treat me equally. I don't care whether you're my friend or whether you think I should or shouldn't marry your daughter, or whatever the issue is."
That really stayed with me, because I think that in order to--I guess in order to feel really, really as though you accomplished something, that's an important concept. Because if you think that everybody's going to love you just because you're now out there or whatever, it isn't going to happen. Yes, there will be more positive experiences because you're out there, but there also will be more negative experiences. That's just the nature of being more exposed.
Rousso
More out there.
Fay
Out there, exactly, exactly. But it's not all going to go away. The laws don't make it all go away. And so I think that disabled people need to support one another. I think it's very important that disabled people have a community that they know, and I think that's a large role an independent living center should play, providing that kind of catalyst or that core, that place where people with disabilities can come together, for whatever reason, for whatever reason. In some instances, it's socialization; in other instances, it might be advocacy or whatever, whatever it is.
What other ways? I think disabled people--it's interesting. I mean, young disabled people now have a sense of entitlement that it took me a lifetime to come up with, but they've got it. And that's really good. That's really good. Now, what they need to know, and this is important: They need to know that there's a history to it, though. They need to know it didn't just happen. I think that's an important thing because they need to know that there's something they need to carry on, that it's not there and it doesn't end here.
Rousso
It's not done, the work is not done.
Fay
The work is not done. Exactly. I like the fact that they're angry if they can't use the library in college or can't fly an airplane to wherever they want to go, or whatever it is, that by law they have to be able to do. That's good. But they also need to know that that they need to use those laws, and they need to keep working at it.
Rousso
You mentioned community, the importance of community, so that is a nice transition to Phyllis, who I know was part of your community.
Fay
Yes.
Relationship with Phyllis Rubenfeld
RoussoSo maybe we could talk a little bit about Phyllis Rubenfeld. First of all, for the sake of the record, talk a little about who she was.
Fay
Oh, God. Who she was is hard for me to answer.
Rousso
I know. I agree with you.
Okay. Well, apart from me, I suppose, in our relationship, Phyllis was a woman with polio in 1946 and was educated in special ed, on home instruction for a brief period of time and then went to school, graduated high school, went on to college and graduate school. Her first graduate degree was in social work. Her second graduate degree was in public administration. And her third degree, eventually her doctorate, was in special education. So suffice to say, she was academically incredibly credentialed and a very smart woman.
Her politics were always clear. Phyllis was very committed to changing and ridding any society of injustice, wherever she saw it. I mean, disability rights was a very natural outgrowth for Phyllis because her family was political. Her parents came from Europe, and she was Jewish, and so the whole World War II and Naziism and Holocaust, all those things--
Rousso
Were they part--were they Holocaust survivors?
Fay
No, they were not Holocaust survivors. They were out. They got out before that. But certainly they had relatives who were. Phyllis's dad was a tailor. He was a tailor. They were very involved initially--
Phyllis' involvement and commitment to disability rights was a very natural progression for her in terms of where--she was very active in the welfare rights movement.
Rousso
Before?
Fay
Before disability rights, yes.
Rousso
You met her in camp?
Fay
No, we were in the hospital together, actually, when we first got polio.
Rousso
Oh, yes, sorry, in the hospital.
Fay
When we first got polio. We got polio the same year. Phyllis and I were at Helen Hayes, which is now Helen Hayes, then the New York State Reconstruction Home. So we were there together for a year. Our parents kind of knew each other a little bit. I can't say that we were actually friends because Phyllis lived in Brooklyn; I lived in the Bronx. For one thing, there was no way to get together, and so we really didn't have any contact with one another after we got out of the hospital.
Our paths crossed again when we both went to the same camp. It was a camp for disabled kids, Camp Carolian. We spent at least a month out of the year together, and this program had also a Saturday component, which I didn't get to because I needed transportation. I didn't have the transportation. Once in a while, my uncle could take me. My father was always working. So I got there maybe, maybe a couple of times a year.
But Phyllis spent every Saturday, so she kept up with the Carolians during the year. But I saw her during camp time, and periodically we would see one another at different, I guess different functions. I'm remembering a time I met her. She was at Rusk for something and met her in the snack bar and we talked awhile, sort of catching up on what we were doing and where we were.
Phyllis was always in school. I mean, she was always doing something related to school, and working. I guess we got together again in the very beginning of--my first recollection was the first demonstration, the gasoline crisis demonstration. Phyllis was at a lot of the meetings. She was then a member of Disabled in Action.
We started to become friends. We knew each other before that, but I don't know that we were really friends. We started to become friends. A lot of our friendship was obviously, at that point anyway, around a common experience with where we were, the days that we were hospitalized, the people there, the experiences there. We were the same age.
Phyllis and I, after a while, until she died--we were able to--she would start a sentence, and I could finish it. I mean, we were really that close. We didn't always agree. We had very different styles, very different styles, but we recognized that and used it when we did stuff together. Phyllis was not intimidated by confrontation. While I will certainly confront, it's not something I do easily.
It was very hard for Phyllis to start. If we were going to a meeting with somebody, it was hard for her to get started and to be assertive in terms of making an introduction and getting why we're here and all of that, so I would do that. But we used each other's styles, I think to our advantage.
Rousso
The friendship really grew and solidified when you had that gasoline demonstration?
Fay
Yes. I think it picked up then, and I learned a tremendous amount from her in terms of organization, because she was involved in so much before that, not related to disability but related to everything else: the civil rights movement, the antiwar movement. I mean, Phyllis was political. I was not. Phyllis was out there in the sixties. I was not.
My first involvement, really, was the disability rights movement, but Phyllis was in there with all of them. That was an enormous help for me. I learned from her all the organizational stuff. Phyllis was a woman who had incredible drive. She had incredible expectations from her friends as well as her students, whoever. She always had high standards, always. I couldn't always--and sometimes there was a problem for me, you know? It was a problem.
Rousso
I could imagine it would be a burden sometimes.
Fay
Yes. "Give me a break," that kind of thing. "I'm going to be late with this, Phyllis." "Ughhhh." The worst thing in the world is you miss a deadline. If you need to get something in on January ninth, well then, it better be in on January ninth. But I didn't always feel as strongly about that as she did.
We actually didn't speak for a number of years, after--well, interestingly enough, when I first started to work at Sinai and ACCD dissolved.
Did you have a disagreement?
Fay
It wasn't exactly a disagreement; it was more of a--I guess it was a disagreement. The last meeting of the Coalition, of ACCD, was a non-meeting. The coalition had dissolved. I knew it was over. Everybody knew it was over, and I believe Phyllis knew it was over. But there was a meeting that was called, and there were, like, two people who were going to show up. It was sort of to put the final whatever, you know?
Rousso
In Washington?
Fay
In Washington. It was going to be in Washington. Now, in retrospect--and Phyllis and I were able to talk about this, obviously--what I think each of us was doing was handling that, that loss, in a way, in whatever way we were able to do that, because for both of us it was a significant loss. For me, I chose to go to a party that my boss, my soon-to-be boss was having at his house for the new people who were going to Sinai.
Rousso
Instead of going to Washington.
Fay
Instead of going to Washington.
Rousso
I see.
Fay
Well, I don't need to tell you--
Rousso
She never forgave you?
Fay
Oh, my God! It was terrible. It was just terrible. Of course, we said some not very nice things to one another. It was more about us in relation to ACCD than it was us in relation to one another. But it was significant enough so that I guess we needed to step back in our own ways for a while, and we did that. As I mentioned earlier, I don't let go of things easily, and that's not a good trait. I'm working on it. I'm a little better than I was. But I'm like my mother in that respect. It's sort of like things are black and white. They're all one way or another way, and that's just not true. So it was difficult for me. Phyllis was ready, I believe, before I was to pick up in our relationship. I thank God that she pursued that because we had wonderful years after that. You know, we really, really did.
Rousso
What was the period of time?
Fay
That we didn't speak?
Rousso
Yes.
Fay
You know, I'd say about five or six years, about five years.
Rousso
A long time.
Fay
It was a long time. It was a long time. And mutual friends would [say], "What is with you two? What is wrong with you two? You're like sisters, and you're not talking. What
Rousso
Did a lot of bad words pass between you?
Fay
No. Over the years?
Rousso
No.
Fay
At that time. It was one phone call. Did a lot of bad words [pass]? Well, hurtful things.
Rousso
I see.
Fay
Yes, hurtful things.
Rousso
Hard to get past them.
Fay
Yes, it is, but we were able to certainly get beyond it.
Accomplishments of Phyllis Rubenfeld
RoussoTalk a little bit about your sense of her accomplishments over her lifetime. I know this is impossible, but just some of the major things she did, her role in ACCD or any other things.
Fay
I think that Phyllis'--and I'll talk about the contributions, but for me, if I think about Phyllis just in general, her major contribution was her belief that whatever we set out to do, we can do, if we just stay with it. And she was certainly an example of that, in her whole life. I mean, she accomplished academically an enormous amount of--I mean, three postgraduate degrees, or three graduate degrees. So, you know, that alone, for anybody, let alone a woman with a disability, is an enormous accomplishment.
Phyllis and I always had--one thing that we did for one another is we--I always had--I think I've mentioned this earlier. I always had, to this day, an intimidation about school, as a result of the crappy education I got. I managed somehow to socially, in spite of the fact that I was isolated and all those things, I somehow managed socially, I guess to achieve. Like, you achieve academically; you achieve socially.
Rousso
Yes.
Fay
So I managed somehow for that not to be an enormous obstacle. Phyllis and I were just opposites with it. We would talk about it. Academically, sure, there were obstacles, and sure, she had to do whatever she had to do to push through them, and I did this on the social side, and she was not able to do it. And so she always had the same intimidation about going into a room with a lot of people for a social--you know--as I did going into a classroom with a lot of people.
We talked a lot about that and helped one another with it. We really did. Phyllis always believed--and she said just the most incredible things, and when Phyllis said them, it meant so much to me that she would say to me, "You really need to get your degree. I can't begin to tell you," she said. She would say to me over and over again, "You will not have difficulty doing this. You're already functioning."
One of the last things she said to me--I never forgot this. She said, "You're already functioning at a doctoral level: the stuff that you write, the things that you do." I couldn't believe she actually said that. "I am? I am?" You know? So she was enormously supportive of me and always helpful. And helped everybody. I'm not unique. The fact that we were very close friends was--it was a big fringe benefit for me. But she was enormously supportive of all disabled people and all people.
Never stopped. The other thing is that she was relentless. There was never, "Hey, I'm taking a hiatus" or "I'm burned out." Phyllis didn't know from burnout. She didn't know from burnout. She really never did. Every single Access-A-Ride that didn't work out got a letter, got a phone call. A bus driver who was rude or didn't do what needed to be done got a letter. I mean, Phyllis addressed every--
Rousso
Injustice.
Fay
--injustice. Every one of them. And addressed them. It would always make me feel like, "Oh, my God! Uh-h-h-h-h!" I could never match her level of energy and commitment. Never, ever. I don't know anybody else who could. Ever.
We vacationed together. We spent many holidays together. Phyllis always did Christmas with my family. So we were very, very much a part of each other's lives, for which I am eternally grateful. I also had the privilege--no, the pain and the privilege of being with her the last weeks of her life. I was with her when she died.
Rousso
You spent a lot of time with her?
Fay
Every day.
Rousso
Was she in the hospital at that time, or was she home?
Fay
She was in the hospital for part of the time, but I was with her when she got her diagnosis, when she was given her diagnosis.
Rousso
What was that? What was the diagnosis?
Fay
She had pancreatic cancer. I was with her when the doctor gave her the diagnosis, and I was with her three months later, when she died. And every day in between. Every day in between.
Rousso
Wow.
Fay
I know that she would have--I'm positive she would have done the same thing. I know she would have done the same thing. But I miss her. I miss her tremendously. I really do. Oh, my God.
Sure.
Fay
I really do. And I think about her every time I do something--
Rousso
Really?
Fay
Oh, yes. I think about her a lot. If I'm in Albany, if I'm in a demonstration or even if I'm just working on something, she'll come to my mind, and it's like, "Okay, now, what would Phyllis do with this?" Or "She'd like this." She's very much a part, definitely very much a part of what I do.
Rousso
That's great.
Fay
Yes. Oh, yes.
Rousso
You hold onto her.
Fay
Yes.
Rousso
So, to hassle you again, just to see if you can talk about some of her accomplishments.
Fay
Her accomplishments, okay. It's interesting, because initially--well, of course, her academic accomplishments.
Rousso
Right. And then her involvement in the disability rights movement.
Fay
Right. In the beginning, Phyllis did not want to be up front. She was uncomfortable with taking on the leadership positions. This was also part, again, of our styles, I guess. I was the president of the local coalition, and Phyllis was on the board, or maybe she was vice president or whatever. But she did not want to be the president of anything. So we worked together, but I was the one who took the leadership--
Rousso
You were on the front line.
Fay
I was on the front line. Her accomplishments, I would say, really began with ACCD. Phyllis was the president of ACCD during the 504 sit-ins and was very much involved in leading that. Phyllis was--
Rousso
She had been involved in the planning meetings to form ACCD, right?
Fay
Yes. Yes. Yes. And very involved in, yes, I would say just about anything--yes, she was very involved in the meetings to develop ACCD and was on the board and then became the president.
Rousso
She didn't resist becoming that president?
Fay
Not at that point, although I'm not sure whether that might have been because--I'm not sure. That may have been her growth. I think that may have just been the progression of her development.
Right, right.
Fay
I can't say it was when school was over, because she was still--I can recall--Phyllis used to suffer from enormous migraines, and during the whole ACCD 504 stuff, she was actually in the hospital on medication for a migraine. She was getting her doctorate, and she was in the middle of the 504 thing, right? I remember I went to the hospital to visit her on Saturday, and she had to focus--with the pain in the head--she had to focus on her dissertation, like something was happening that week. I don't know what it was. The next two weeks or whatever it was. And so she would say to me, "Okay, this is what has to be done for ACCD." Doo-duh-duh, doo-duh-duh, doo-duh-duh, dah. And I would be there, taking down--sort of helping her with that. But it was never "I can't do it; therefore it won't get done." You know what I mean? Phyllis was, as I said, just totally dedicated. So she led the 504 thing. It was under her leadership that that occurred.
She was, I would say, responsible for--and these are things that I can't measure, but I know that she was responsible for encouraging and changing the lives of disabled students. She gave them a way to believe that they could accomplish, and she did that by believing in them. She believed it, and so they believed it. Many of them, I'm sure, went on because of Phyllis. Of that, I'm sure. I know she affected my life, and I know that she was able to do this for them.
Towards the end--you know her from SDS [Society for Disability Studies], so--some of what she contributed were articles that were published on disability. She was--what? Her awards were numerous. I mean, she was recognized for achievement at Hunter [College] for what she was able to do for access and 504 compliance throughout CUNY [City University of New York]. It wasn't just Hunter, but throughout CUNY.
Rousso
Wow.
Fay
So she really had a very significant presence locally towards the end of her life, and then with ACCD, on a national level. I'm sure I'm missing stuff. I know I'm missing stuff.
Rousso
You'll track down her resume. That will help.
Fay
Yes, I'm going to really try to get it--right.
Rousso
Right.
Fay
And I'll be glad to answer anything related to the resume. But I have to look for it. I know I've got it.
Rousso
Okay. Is there anything else? Not with Phyllis. Let's go back to Anna Fay. Is there anything else you can think of that we didn't cover that you wanted to note?
Fay
Harilyn, I can't think of anything right now. I really can't. If I do, I'll certainly call you.
Rousso
Okay. You had mentioned Phyllis had encouraged you to go back to school. Was this--.
Did I ever do it? No.
Rousso
You said you had attempted it, but it didn't happen.
Fay
I did. Well, I had attempted it, actually, before that. Once, with Phyllis. No, I didn't do it. It's something I still think about. Believe it or not, I do.
Rousso
Well, it's not to late. [Laughter.] Here's your chance.
Fay
I still think about it, right. I don't know. Who knows? Maybe one day I will do it.
Rousso
Do you still have a sense of yourself as somehow not the student? Has that stayed with you?
Fay
It stayed with me to some extent, yes. It has. I just see it as this enormous feat or challenge. I've had other challenges. Other things have occupied my time and my energy. But now, I don't know. It may be something I will do. I don't know. Who knows?
Growing up disabled versus acquired disability
[Editor's note: This final section is from a fourth interview session conducted on October 16, 2002.]
FayAll right. There is one thing, Harilyn, if it's okay.
Rousso
Yes.
Fay
You had asked me about--we were talking about Phyllis also last time. There was something else that I came across that really I guess had more to do with Phyllis's later involvement with the Society for Disability Studies, SDS.
Rousso
Right.
Fay
Another area of interest for her, as well as for me--I was looking through--trying to look for I guess her résumé or CV [curriculum vitae]; I still haven't found it. But I came across a folder of a lot of work, again, that we had done in the area of age of onset of disability. Oh, God, there is research that we've done; there is a proposal, an outline of a proposal that I had--
Rousso
Really?
Fay
Yes. There's a lot of stuff. And it's something that I'm still interested in pursuing somewhere, somehow. I don't know. I'm not sure whether SDS--since Phyllis died, I don't know where that--
Do you think that's important?
Fay
I think it's incredibly important.
Rousso
Talk a little, too, about that.
Fay
I think that people who grew up disabled, either disabled from birth or from very early on, like, five, six, have a very different disability perspective and experience than people who acquire a disability as an adult, or young adult and on; young adult being, I don't know, eighteen, seventeen. I think that from, let's say, age seven to age eighteen, that there's a continuum. There is a progression. But I think that we have not looked at this issue enough or at all, really. I don't know whether anything has been done with it now. But my sense of the differences are--well, one very clear one, to me, is that people who grow up disabled grow up with a certain consciousness of being disabled, having all the messages that society gives you about that, and somehow incorporating that into what you do and what you don't do and what you're expected to do and et cetera.
People who acquire a disability as adults already have an ego. They already have who they are.
Rousso
Right. A sense of sense.
Fay
A sense of sense, exactly. I'm not making this easier, harder, better--
Rousso
Different.
Fay
Different, different. We were talking about ACCD. If we look at the people who were involved on that board, and the people who were involved initially, they were people who were disabled from--almost exclusively people who grew up disabled. I think the rage and the anger is much more prevalent there. I think that there's a sense of entitlement on the part of people who acquired disabilities later in life, that someone who grew up with a disability just doesn't have, or needs to acquire, needs to develop.
Rousso
Right.
Fay
And in order for it to be there--if you want to just look at--I would love to just look at employment. What are the statistics among people who were disabled as kids, grew up disabled, and people who acquired disability?
Rousso
You have a theory?
Fay
Yes. My theory is that those who acquired the disability--more of them are employed and at a higher level of employment. Now, I could be wrong on all of this, but I would like us to look at the research and find out if I'm wrong. You know what I mean? I think the culture, the disability culture that we talk about is really a culture that people who grew up disabled belong to. I don't think that that whole set of experiences--that somebody at adult onset can relate to that whole business of--what am I trying to say?--of experiences.
An example: Okay. There were three women. All right. You may know them. You may have known them. Ruth Begun--these were people at NPF that I worked with. Ruth Begun, Fran Barish, and myself. Ruth Begun was a woman who had polio. She was para. She [had a] very similar disability to mine. Fran Barish was spinal cord injured, paraplegia. The three of us had very similar disabilities, wheelchair users, et cetera.
Fran and Ruth both acquired their disabilities. They were different disabilities, but they both acquired their disabilities as adults. We were talking about this issue once, and I said to Ruth, because Ruth had polio and Fran was spinal cord injured, and I said to Ruth, "Okay, which one of us, Fran or me, do you identify with more?" She said, "Fran." So it's not necessarily disability related.
Rousso
So it's not specific to the disability.
Fay
Right.
Rousso
It's the experience.
Fay
Exactly. It's to the experience, right. So Phyllis and I were always very, very interested in this area, and I do have some stuff that we wrote. I don't know, I'd like to--
Rousso
It would be great to dig it up and perhaps this--. You know, near the end of the last interview, I said "Are there areas of research that interest you?"
Fay
This one really does, big time, always, because it relates to organization, too, Harilyn. It relates to how do we galvanize this community, the disabled community, so that we are fighting for and struggling to address the same issues, all of us? How do we galvanize this community, all of it, the whole community, to feel empowered, to feel entitled, to be angry about being oppressed?
Rousso
I'm wondering, then, that there might be different methods, or different issues for those who were born--
Fay
Right.
Rousso
You know, [disabled] from childhood.
Fay
Exactly. That's exactly what I'm saying.
Rousso
So organizing strategies have to take that into account.
Fay
That would be why I would like the information, but it doesn't mean--it would certainly serve other purposes as well. What kind of methods would you use for teaching? I mean, forget an education. Just a whole list of things.
Rousso
Tell why you think there are [differences]--
-mainly for people who were disabled from childhood.
Because I think that there is an anger, almost a rage. And there may be a rage, that can only be--that it's there only from experiencing exclusion and rejection and oppression from childhood. Or there is a profound oppression. Or both. Whatever. I think on a more superficial basis, there is a common experience. I can't say that, no. The common experience of people--I mean, there are common experiences, but you're looking at--their experience is looking back as a child, so how you would do the research, which is what we found difficult, because it kept going--it was just much too big: What groups do you look at? How do you do it? You would really need to identify groups of adults who were disabled, and then we'd have to set those parameters. You're talking about only from birth? Because it is different. If you were not disabled--I mean, I think that I'm different, because I had polio at age seven, from somebody who was born with a disability.
Rousso
You think so? You think there are those kinds of variations?
Fay
Yes, I do. I really do. And I think I'm different from somebody who became disabled at thirteen. So from seven to thirteen I think is a jump.
Rousso
And birth to seven, do you think that is a matter of negative messages?
Fay
Yes. I think there are several things, Harilyn. We look different. Most of us have visibly not symmetrical--I mean, if you think about people, for example, with spinal cord injury, people with spinal cord injury really look very much like anybody else, except that they sit usually in a wheelchair or whatever, but their disability doesn't make them look that different. The rest of us do.
Rousso
But you were saying you think that someone who was born with a disability is different than someone who--
Fay
Than the person who was seven?
Rousso
Yes.
Fay
Yes, I do. I do. I think that just those seven years of being perceived as a child with--I think the biggest thing is expectations. I really do. I think that no one expects a disabled kid to do anything. They're not expected to achieve; they're not expected to achieve socially, academically, any other way.
Rousso
That's true.
Fay
And I think when you're not expected to do anything, it's very difficult to be motivated and to believe--never mind motivated--to believe that you can.
Rousso
What is interesting, though, in your experience, what you described, is that you were a really good student until age seven--
Fay
Right.
Rousso
And I'm sure your parents had expectations. And then, once you became disabled, your parents' expectations changed drastically.
Right, right.
Rousso
But perhaps yours didn't.
Fay
Right.
Rousso
They were still intact.
Fay
Right. My parents' expectations--my parents were part of society.
Rousso
Yes, right, sure.
Fay
But they were incredibly supportive. If I didn't have the parents that I had--
Rousso
Yes, definitely.
Fay
Right? I mean, you know, I think all of us--I think we have to look at family, because I think families make the difference. I really do. I mean my parents--yes, they didn't--well, I'm not so sure my parents would have expected me to go on to college, even if I had not become disabled, because they were working class--
Rousso
Gender?
Fay
And gender, right. But--
Rousso
They didn't go?
Fay
No.
Rousso
Did they go to college?
Fay
They didn't finish high school.
Rousso
That's right.
Fay
That probably wasn't going to be an expectation for me. But they did expect me to be self-supporting, and that's what they pushed: to be able to earn money so you can take care of yourself. But yes, I think that expectation is a huge, huge, huge thing. And special ed? Kids are still not expected to achieve. I mean, it's a joke.
Rousso
Well--
Fay
Anyway, that's a whole other--that's an area that Phyllis and I--
Rousso
But that would be a very good area to research, and I think that it has not been well studied.
Fay
Right. So you and I will do it, Harilyn.
Rousso
Okay.
[Laughs.]
Rousso
Is there anything else?
Fay
No, that was my biggie. I was thinking about it last night.
Rousso
Well, it's good.
Disability Rights and Independent Living Movement Oral History ProjectBobbi LinnActivist with Disabled in Action, Counselor at Center for Independence of the Disabled in New York, and Director of Bronx Independent Living ServicesInterviews conducted by
|
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 Bobbi Linn, dated July 7, 2001. 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:
Bobbi Linn, Activist with Disabled in Action, Counselor at Center for Independence of the Disabled in New York, and Director of Bronx Independent Living Services, an oral history conducted by Denise Sherer Jacobson in New York Activists and Leaders in the Disability Rights and Independent Living Movement, Volume III, Regional Oral History Office, The Bancroft Library, University of California, Berkeley, 2004.
Tape Guide
- Interview 1: July 7, 2001
- Tape 1, Side A 131
- Tape 1, Side B 137
- Tape 2, Side A 144
- Tape 2, Side B 150
- Interview 2: July 8, 2001
- Tape 3, Side A 153
- Tape 3, Side B 159
- Tape 4, Side A 164
- Tape 4, Side B 171
- Interview 3: July 13, 2001
- Tape 5, Side A 177
- Tape 5, Side B 182
- Tape 6, Side A 188
- Tape 6, Side B 193
Interview History--Bobbi Linn
Bobbi (Barbara) Linn was invited to participate in the oral history project because of her ongoing leadership role as an activist and advocate in the development of the New York City's disability rights movement beginning in the early 1970s.
The first two sessions of the three-session interview took place on July 7 and 8, 2001, at Ms. Linn's Bronx co-op apartment located in Amalgamated Housing, the oldest cooperative community for middle income housing in the United States. Fortunately, Ms. Linn's apartment had partial wheelchair access and provided weekend accommodations to the interviewer for the first segment of the week-long interview series in New York. The concluding session of Ms. Linn's interview was held in the sitting area of the interviewer's midtown Manhattan hotel room on July 13, 2001. Bobbi and the interviewer have been close friends since high school.
Highlights of the interview include Ms. Linn's recollections of the founding of Disabled in Action, Inc., one of the first grassroots-based political movements of disability activism of its time. Ms. Linn was able to offer a unique and personal account of DIA's growth because of her friendship with Judith Heumann, who spearheaded creation of the organization. In addition, Bobbi detailed her own work as advocacy counselor for the Center for the Independence of the Disabled in New York, and as executive director of Bronx Independent Living Service. Ms. Linn also candidly discussed having the dual disabilities of cerebral palsy and a psychiatric disability, relating lifelong frustrations that the effects of discrimination and prejudice have had upon her education, employment, and personal and professional relationships.
Both Ms. Linn and the interviewer have speech disabilities due to cerebral palsy, as well as evident New York accents, requiring more attentive consideration in transcribing and editing the interview. The tapes were transcribed by Sharon Bonney, a member of the Disability Rights and Independent Living Project team, whose ear was attuned to the narrator's and interviewer's speech patterns. Ms. Bonney then reviewed difficult portions with the interviewer to complete the transcription. This joint effort produced an accurate transcript.
Due to a physical illness requiring a lengthy hospitalization, Ms. Linn's review of her transcript was delayed. When she returned home, she made minor changes and additions to the transcript.
Interviewer
I. Early Years with Multiple Disabilities; Camp Jened; Activist with Disabled In Action, 1950-1968
Early years and family background
Okay, Bobbi, could you tell me when and where you were born?
Linn
I was born in the French Hospital in New York City on October 15, 1950.
Jacobson
And is that in Manhattan?
Linn
That's in Manhattan.
Jacobson
Tell me a little bit about your family.
Linn
Well, before we go to that, perhaps you want to know how I got CP [cerebral palsy].
Jacobson
I was going to ask that later but we can start with that now.
Linn
According to my mother, her doctor didn't get to the hospital, and the resident was very busy talking about what he did the prior evening. And he said to give my mother an enema. My mother said to him, "I'm going to have the baby. It's too late," she insisted. I came out with the shit, which is the way I kind of think of how I entered the world.
Jacobson
You came into the world with the shit. That's quite a beginning. So, did they know right away that there was something wrong?
Linn
She expected something also, because when I was a day old I went into a coma. I came out forty-eight hours later, but they weren't sure what caused the coma or anything. The pediatrician that my mother used was a schmoe. I don't know how to spell it. But they never told my mother--never put a name on what this was until I was almost two. My mother had taken me to the pediatrician and she says, "You know Bobbi's throat is always red," and the nurse replied, "Well, children like that often get red throats."
Wait, wait. Go back. The nurse responded with, "Children like that often get red throats."
Linn
Right. My mother said, "What do you mean, children like that?" And she said, "Barbara has cerebral palsy."
Jacobson
Did they even know, did the pediatrician know right away?
Linn
I'm not sure. I think my mother--I'm not sure. I think my mother... My mother tells me a story, that when I was four months old my uncle kept trying to give me a rattle in my hand and could see that I was having trouble with my fingers. But he didn't say anything to my mother. Then when I was eight months old, another aunt said to my mother, "If you're worried about Barbara mentally, you don't have to worry." Because she has a son who was brain damaged. She could call his name all day, and he wouldn't turn around. Whereas at eight months, I knew my name and I would respond to it. But it wasn't until the nurse said the name that my mother put everything together.
Jacobson
We're going to talk more about this, but can you tell me who was in your family? Your immediate family?
Linn
Well, I have one brother and my parents.
Jacobson
And your parents' names?
Linn
Esther and David Linn.
Jacobson
And your brother?
Linn
Norman.
Jacobson
And you were how much younger than him?
Linn
Three years and ten days.
Jacobson
And where did you grow up?
Linn
I grew up in about the center of the Bronx--the West Bronx. It was an apartment building on the third floor. It was a walk-up.
Jacobson
I know at some point your grandmother was living with you. Was that early on?
Linn
No. My grandmother didn't live with us, she had an apartment in the same building.
Jacobson
Oh, okay. I'm sorry.
Linn
No problem.
Jacobson
It's been quite awhile.
Linn
You can say that again.
What's the date of your birth?
Linn
October 15, 1950.
Jacobson
Okay. What did your father and mother do for a living?
Linn
My father owned a series of luncheonettes. He worked long hours. My mother was a stay at home mother for about the first twelve years of my life.
Jacobson
And then what?
Linn
I was very attached to my mother. The doctor kind of told her to get a job and I would come less attached.
Jacobson
What did she do when she got a job?
Linn
She did clerical work and light bookkeeping.
Jacobson
Did your parents, how high did they go in school?
Linn
My mother graduated high school, I think. My father got up to his senior year, but I don't think he got a diploma.
Jacobson
They were both born in New York?
Linn
My mother was born in Chicago and moved to New York when she was about six. My father was born in Manhattan.
Jacobson
Were their parents born--
Linn
No. All my grandparents were born in the area of Poland and Russia. They kept switching...
Jacobson
My grandmother and grandfather were born in that area, too. Do you know when they came to this country?
Linn
Well, my maternal grandmother, whom I was very close to, she came when she was eighteen. I think she was born in 1898. And it would have been 1916. I'm not sure about the rest of them.
Jacobson
I'm sorry, what about the rest?
Linn
I'm not sure which year they came.
Disability identified as cerebral palsy, treatment
JacobsonOkay. Let's talk about your having a disability. You said you were two when your mother first had a name for what it was, were you walking at the time?
Linn
I believe I was. I know that when I was nine months I was using a walker like regular kids and I believe by the time I was two I was walking, but I'm not positive.
Jacobson
What about your verbal development?
Linn
That's interesting. I don't know.
Jacobson
Okay. So other than that, you really don't know what your parents saw. So when your mother learned you had CP, what did she do?
Linn
She took me to the medical center in Columbia Presbyterian Hospital in New York. We would go to the cerebral palsy clinic for an evaluation. Following the evaluation, we used to go three times a week. I took lessons for speech, and physical therapy and occupational therapy.
Jacobson
Okay. Do you remember much about that experience?
Linn
I remember that I couldn't understand why I had to do it and why my brother didn't have to do it. I can remember not being too happy with the other kids that I saw at the clinic. Just not being happy with the situation at all. I also remember, and this really gives me a lot of shame now, there was a PT [physical therapist] who herself had cerebral palsy. And I knew it, and I didn't want to work with the woman at all.
Jacobson
Can you remember her name?
Linn
No.
Jacobson
How about the other therapies?
Linn
I don't remember a lot. I remember that my speech therapist was in a wheelchair, but she was not like the PT in that she didn't have CP. She had another type of disability.
Jacobson
That was rare that there were at least two therapists who had disabilities.
Linn
When I think about the woman who had CP, I think about all the obstacles in my life to getting an education. And we go back fifty years almost, she had to be remarkable.
Jacobson
Did she walk? How did she talk? What type of cerebral palsy did she have?
Linn
It was similar to mine. Like she could walk and she could do a lot of stuff but with jerky motions.
Jacobson
But, what about her speech?
She also had a speech disability.
Jacobson
Wow. Wow, that was [inaudible].
Linn
From my reactions to these things, the people at the clinic thought that I might need psychiatric intervention. So I also started seeing a psychiatrist at Columbia Presbyterian.
Jacobson
How old were you?
Linn
I think about six by this time.
Jacobson
You said you knew you were different.
Linn
And I didn't like it a bit!
Jacobson
How do you and your family think you were treated by the medical profession?
Linn
I think my mother had very good feelings about the care that I got at the CP clinic at the hospital. She thinks that the original pediatrician was a moron for not telling her. And she, of course, hated the hospital where I was born because she thinks the disability could have been prevented.
Jacobson
Was your brother born at the same hospital?
Linn
The same hospital. The same doctor. In fact, my mother was telling me a story that she said to my father that it would be cheaper in the Bronx. He said to her, "Everything turned out good last time so we're going the same way this time."
Jacobson
How long did you go to Columbia Presbyterian?
Linn
I think I went up until I was six to the clinic. Then I swore off all kinds of therapy. But I kept being checked out at the psychiatric clinic.
Jacobson
So you just refused to go.
Linn
Right. My will was very strong, even then.
Jacobson
Do you have any memories about psychiatric therapy?
Refuses to attend school, 1956
LinnVague. I remember that it started almost at the same time that I refused to go to school.
Jacobson
Let's talk about school. Talk about how old were you when you started school?
I think I was about to go when I was six to first grade. And I was about to go to a segregated classroom. And I remember going into the school and seeing the other children and saying... [door bell interruption]
Jacobson
We were talking about you beginning school and you didn't want to be in the segregated school with disabled kids. Do you remember where that school was?
Linn
I'm embarrassed, Denise. That was PS [public school] 85. [Laughter]
Jacobson
I was one of those kids you didn't want to be with. At that time, I think PS 85 was the only school with a health conservation [HC] class in the Bronx.
Linn
There was another something. It was behind the YWHA [Young Women's Hebrew Association], on the [Grand] Concourse, on McClelland Avenue, because I remember that after I turned down 85, then they took me to this other school that wasn't in my district.
Jacobson
Was that a school or just a program?
Linn
It was a public school.
Jacobson
Oh, okay. I had no idea. Tell me what happened.
Linn
Well, I didn't want to go there either. So one day my mother and father took me there and they took me one way and I went out the other door. So here I am a six-year-old kid, in this strange neighborhood, who is trying to walk home. My mother was out of her mind.
Jacobson
Did they find you?
Linn
No, I walked home and got home. When they found me, I was right outside. I remember that, because I was supposed to have somebody to cross me. I would go up to people and ask them to cross me. I remember one person saying, "Why can't you cross yourself?" So after that I began crossing by myself, but I don't remember how I got across the Concourse. I have no memory of that.
Jacobson
Where were you living at the time?
Linn
On Tremont Avenue and Grand Avenue.
Jacobson
So what did you do about school?
Linn
Well, my line was that I wanted to go to the school that my brother went to and my friends went. The principal, who would never hear of it, something happened to her, and she was out for the semester, and the vice principal decided to let me try it.
Jacobson
What year was this?
Linn
'56 or '57.
Did you have friends in your neighborhood?
Linn
Yes. People would go out and hang out like there was our building and the next building. And like I remember I had a girlfriend, Edith, was in the next building. I had Johnny, the guy upstairs.
Jacobson
And they all went to that school.
Linn
Yes.
Jacobson
How did that work?
Linn
It didn't work out that well. First of all, I wouldn't stay in school unless I could see my mother in the glass. So for three months my mother was outside in the hall. I think if I was the mother I would have killed me by then! And then, testing became more standardized. I was lagging behind because I always needed more time and I couldn't write as well as other people. Then, as we got older, it wasn't just friends, it was people deciding boyfriend and girlfriend. And I was of course left out on my own.
Jacobson
You think you were around twelve or thirteen?
Linn
I think it was around eleven, twelve.
Jacobson
They started early. What happened? Did you graduate?
Linn
I graduated. I graduated. But I was supposed to go to a different junior high school than everybody else, PS 26, because junior high school 82 was a pretty rough school.
Jacobson
So where did you go?
Linn
I was supposed to go to Elizabeth Barrett Browning School for junior high.
Emotional disability and home schooling
You went to Elizabeth Barrett Browning Junior High? What was it like?
Linn
Well, I actually went for only about six weeks. And then I decided I wanted to stay home and not go to school.
Jacobson
Why?
Linn
I think I was feeling my differences from everybody. I think I felt like I didn't belong in that structure. Or I felt that I didn't belong with disabled kids.
Jacobson
Why didn't you feel you belonged with disabled kids?
Maybe if I knew the answer to that, I would be able to understand my life more than I do at this point. I don't know now, looking back over it. I don't know whether it was my always feeling like an outsider, which doesn't really have to do with my physical disability, but has more to do with my emotional disability. Because I had so much physically going wrong, everybody paid more attention to my outward disability than to my emotional disability.
Jacobson
What was it like in your family at that time that you were going through this?
Linn
Well, my mother, of course, kept wanting me to go to school. As did my dad, but he was like a quiet figure. Like everything was done through my mother. And my brother, I don't know, it was similar to every sibling situation.
Jacobson
Tell me more.
Linn
I don't know what he thought. I don't know if he thought that it was a good thing that I was getting out of going to school or whether he thought that, what would happen to me if I didn't get an education.
Jacobson
Were you close? Did you fight?
Linn
We fought a lot. But that doesn't mean we weren't close.
Jacobson
Okay. So what did you end up doing about school?
Linn
I went on home instruction for about two and a half years.
Jacobson
What kind of education did you receive on home instruction?
Linn
Well I think I missed out on getting to know people and how to deal with different relationships.
Jacobson
What about academically? Were you a kid who liked learning?
Linn
Yes, I was. And so I did the homework and I read the books.
Jacobson
And what about the teacher? What kind of--
Linn
Some I liked and some of them were just okay.
Jacobson
How many different teachers?
Linn
I think I remember two. But I haven't thought about it in years.
Jacobson
Okay. And was there two because there were different subjects?
Linn
I think it was different years.
Attends Camp Jened, 1965
JacobsonSo you liked home instruction. You graduated. And then what happened?
Linn
I think the summer before I went into high school--
Jacobson
What year?
Linn
I went to this place called Camp Jened.
Jacobson
So what year?
Linn
Okay, that would have been 1965.
Jacobson
And how did you get there? Why did you go?
Linn
Well, we were still seeing a psychiatrist. She suggested to my mother that a summer camp might make me more independent.
Jacobson
What was the psychiatrist's name?
Linn
It's funny, I can remember it. Doctor Mountsponin. And she was--
Jacobson
Can you spell that?
Linn
I can't spell. M-o-u-n-t-s-p-o-n-i-n? Or e-n?
Jacobson
That is one word?
Linn
Right. And she was an older woman. And I think she was on the faculty of Vassar and came down once a week to do clinic in Columbia Presbyterian.
Jacobson
So she recommended you go to a camp?
Linn
A camp for people for disabilities.
Jacobson
Okay. And how did you find Jened?
Linn
Well, my mother found it from her cousin. Her cousin said, "The camp where I met my husband was sold and became a camp for disabled people. And it was so lucky for me, why don't you send Bobbi there?"
Jacobson
And you agreed to go?
Linn
I don't remember what the ride up there was like, but there must have been some struggle going on, because I remember the ride up was full of all these fears.
Jacobson
Okay. Did your parents drive you?
Yes.
Jacobson
So tell me about Camp Jened.
Linn
Camp Jened is on a beautiful mountain. It was on a beautiful mountain. Part of the Green Mountains in Hunter, New York.
Jacobson
About how far is it from home?
Linn
I think it's about ninety miles from the city.
Jacobson
It's like a two and a half hour ride.
Linn
But what's confusing to me, it's like a two and a half hour ride to Albany and I know Jened is before Albany, but I guess I'm forgetting how long it took to really get up on the mountain.
Jacobson
I know it took a long time.
Linn
Let me tell you, we pull into the campground and we're getting out of the car, and I spot this disabled woman from my block at home who I can't stand. And all of a sudden, my parents are out of the car and I'm in the car with all the buttons down.
Jacobson
So you locked the car doors.
Linn
Right.
Jacobson
Do you remember who was the director?
Linn
Jack Birnbaum, the director in '65.
Jacobson
And I take it that you had a camp interview.
Linn
Yes. I did. I remember it was downtown on Broadway. And I liked Jack. I may not have liked the idea of going to camp, but I liked Jack. He was a nice man.
Jacobson
What did you like about him?
Linn
He was a warm person and seemed like... He just seemed like a nice person.
Jacobson
I guess what I am trying to get at is how people treated disabled people, you know? I think that Jack Birnbaum treated disabled people like regular people.
Linn
You're right.
Jacobson
You know what I mean? Will you tell me a little bit about how other adults treated you in contrast. Do you remember?
I don't remember from that period. All I can remember is when I was at PS 26 and there was like an old teacher who once pushed me in the line. But I really don't know whether that had to do with my disability or the fact that she was an old bitch.
Jacobson
Did you feel like the teachers you had in regular public school treated you like they treated other kids?
Linn
I'm either blocking it or I don't remember.
Jacobson
So you are back in camp and you locked the car doors. How did they get you out?
Linn
I think Jack coaxed me out, and I can't remember what he said, but I think he said something like, "Try it. You can always go home. Try it." And even for a nut like me, that seemed pretty reasonable.
Jacobson
So what happened?
Linn
Well--
Jacobson
How was it structured?
Linn
Well, there were eight to ten campers in every group, I guess. I was put in a teenage camp. And my counselors were Marilyn Hausman, Ann Owens, and Maxine, I can't remember her name. Even though the camp was very nice, with friends like Frieda Tankus and Chris, I don't remember her last name.
Jacobson
Eckfeld.
Linn
I, again, felt different. It came out more that I wanted to go home rather than I don't want to be with these people.
Jacobson
How were you treated?
Linn
Very well for someone who behaved the way I did. The counselors were very patient and gave me a lot of one to one. The unit head, Larry Allison, also gave me a lot of one to one.
Jacobson
If I remember correctly, Judy Heumann was there that year.
Linn
She wasn't in that group. We were in the same cabin. The groups were separated by a bathroom in the middle.
Jacobson
So, just to elaborate a little bit, they called the groups by number. So the girl's bunks were G5 and G6. What bunk were you in?
Linn
G5.
Jacobson
And Judy Heumann was in what?
Linn
G6.
What do you remember about camp?
Linn
I remember crying a lot.
Jacobson
What do you remember about Judy [Heumann].
Linn
Judy was a teen and wanted to be more like, what did they call the junior counselors?
Jacobson
CITs [Counselor in Training].
Linn
She was supposed to work in the office and I don't think that everything panned out. But I remember that Judy was just a normal person who happened to sit in a wheelchair.
Jacobson
Did that awareness about Judy--you said she was a normal person who happened to sit in a wheelchair. Was that the first time that idea really hit you?
Linn
I guess it was because I guess from the time I left school and I ran home, I really had not been with disabled people.
Jacobson
Did you feel that way about other campers?
Linn
Sure. Like Frieda and Chris and Katz, they were like...
Jacobson
That's Linda Katz.
Linn
They were just like ordinary people. They wanted to, like, live.
Perceives a disability hierarchy
JacobsonTell me more about that if you can. Was it like a light bulb went on in your head that disabled people were not like you thought they were?
Linn
There was that light bulb, but there were still circles. They were in one circle, and maybe because it was my disability was so much different than theirs, and maybe because I was given such a poor profile of myself--
Jacobson
What were their disabilities?
Linn
Okay. Judy had polio. Frieda Tankus and Linda Katz had some type of muscular dystrophy, Chris was either a double amputee or a triple, I don't quite remember.
Jacobson
And so, how did they treat you? Were they friendly?
Linn
I got the idea that there was a hierarchy. [Inaudible]. That was the first place I realized that there was a hierarchy.
Jacobson
What were you realizing?
That the more normal you looked, the more normal you spoke, and the more normal you acted, the more accepted into the crowd you were.
Jacobson
What about the counselors?
Linn
I happened to have three of the best counselors. They were really--I don't have the words. They were very open, very caring. Each would go the extra mile.
Jacobson
They didn't treat you like you were lower in the hierarchy, but you felt--
Linn
No. It's really funny, when I look back at it, even though I didn't know if I wanted to be considered as part of the hierarchy, I know that if I was, I would be only in the lower range.
Jacobson
That's a very interesting perception. So did you--I don't know how well you got to know Judy at that time, but do you have any sense of her own awareness of her own disability issues or--
Linn
No. I don't think so. I think that was the point where even Judy wanted to meet boys, and have fun, rather than organizing marches--
Jacobson
But she wanted to be--she didn't want to be a camper.
Linn
But she kind of adjusted to the role very easily. She and Frieda were very, very close.
Jacobson
So you don't remember talking with her about any--
Linn
No.
Jacobson
The rights aspect of feeling like disabled people were treated differently?
Linn
No. The only thing that I could somewhat relate to that is I can remember that it used to be a big treat.
Jacobson
A truck was rumbling by and I missed what you said.
Linn
What I remember is that it used to be a big treat to go into town to the soda shop and get ice cream and malteds and all that. I remember the scene, I'm not positive if it was the first year, but I remember these people staring at us like we were from outer space. And the counselors would say to us like, "What was your average score? And we would say, "Ninety-five." I think that's the first time that I realized that we were going to have to show people that we were capable.
Jacobson
The town was about half a mile from the camp.
Linn
I think so.
Jacobson
How did you get there?
Linn
I walked it.
What happened? Did you stay at camp for the whole--
Linn
For the whole month, I did.
Jacobson
You didn't want to go home?
Linn
I always wanted to go home.
Friends with people with disabilities
It was at that time that you started to gain some awareness about--
Linn
Yes, about people with disabilities. Because of the experience, and even though we weren't close at camp, I got people's phone numbers, and we would talk when they got back from camp. And I would go visit... Frieda and I would visit. And we really got to be close friends.
Jacobson
Where did Frieda live?
Linn
Frieda lived in Brooklyn, like in a public housing project. It was a long, long ride. I can remember the first time I went there and I was telling my grandmother that I was going by train and she said to me, "What are you crazy, going to Brooklyn?" I said, "Well, I have good directions and the girl's mother is going to meet me by the train station."
Jacobson
And you were pretty mobile.
Linn
Yes.
Jacobson
Had you been traveling by yourself before camp?
Linn
Yes. Yes. I was able to go down and go to the 53rd Street Library. I don't remember the first place I went independently. But I remember the fact that I was probably traveling on buses before my friends from Girl Scouts were doing that.
Jacobson
You were a Girl Scout?
Linn
Yes.
Jacobson
When did you become a Girl Scout?
Linn
I think somewhere in the fourth grade. They were a troop that met in my school.
Jacobson
How was that, Bobbi?
I think basically it was a good experience. Some of the girls weren't that friendly, others were. Which is also a good experience.
Jacobson
Did you have any friendships before camp during that time in your life as a young girl?
Linn
No, not really.
Jacobson
So Frieda was really your first friendship.
Linn
Well, there was a girl from my Girl Scout troop. But in a way, Frieda was my first friendship. I also kept in regular contact with Ann Owens who was one of my counselors from camp.
Jacobson
Was she in the city?
Linn
Yes. She went to Barnard College.
Jacobson
What was she studying at Barnard?
Linn
I think she was studying French.
Jacobson
She wasn't doing any disability-related--
Linn
No.
Jacobson
Do you know how she started working at camp?
Linn
No.
Jacobson
I know that Marilyn had been studying to teach deaf children. But I wondered about Ann.
Linn
But Ann went to Africa for a couple of years, came back and got a degree in ministry, and became a minister.
Excels in high school health conservation classes
JacobsonInteresting. And so, at the time, the summer, I mean, the September after camp, you were in what grade?
Linn
I was in ninth grade. A Freshman. But I didn't want to go to school.
Jacobson
What happened?
Linn
I was about to go to Walton.
Jacobson
Walton High School.
My same--my same--Why am I blocking the word? I would have temper tantrums. Well, I could figure out why I was blocking the word. So they said, "Well, why don't you try going to Roosevelt High School. They have the health conservation class." So in December, that's kind of where I showed up.
Jacobson
What was a health conservation class?
Linn
The way it was explained to me, in high school, people were semi-mainstreamed. But also came back to the room when they needed help taking tests or stuff. And there were teachers and aides in the health conservation classes.
Jacobson
Was that like a home resource?
Linn
Exactly. Exactly.
Jacobson
Which was different than it was in elementary school.
Linn
Right.
Jacobson
What was it in elementary?
Linn
Well, I never really went to one. I think it was called desegregated from what I've been told. And then they had people studying at various levels with the same teacher going back and forth and people didn't get very good schooling.
Jacobson
When we talked about you being segregated, it was concerning disability and not by ethnicity, right?
Linn
Right.
Jacobson
It was different than segregation in the South, right?
Linn
Right.
Jacobson
Okay, what happened?
Linn
Well, I had a lot of doubts, as usual. I went to the class the first day and I met some of the people. I've got to say that I met this wonderful woman who I wasn't--I wasn't certain at first meeting you, Denise, that you had [inaudible] because according to the hierarchy, you, too, would fall in the low bottom.
Jacobson
Why?
Linn
Because you had CP, and plus you had a speech disability. But what really told me you were cool--It was about a week later. I was taking some subjects in the health conservation class. Since I had arrived very late in the semester and I couldn't go mainstream until the new semester started in January, I was really into it and I did my homework. It was science with Mrs. Stone. You were sitting in the back of the class, and you were making jokes like she would ask what you would call something in space. I had all the answers because I really had done the homework. But you were coming up
Jacobson
I can't remember if you came in October or November.
Linn
I think it was December.
Jacobson
December. And I was a sophomore. Right.
Linn
But I thought you were a junior because you weren't there very long.
Jacobson
I was a junior. You've got a better memory than I do. Okay. So what happened?
Linn
Okay, now I was going to school. I didn't want to go on the school bus, so they let me go on my own. I was taking two buses to go to school. Believe it or not, I found some people that I already knew who were going to my public school. I felt like I was, I was like a typical, well, I was never typical, I was going to school like everybody else. I also had another friend in the conservation class and her name was Judy Beasley.
Jacobson
I remember Judy.
Linn
I started doing really well in my academics. I remember that when I had gone to algebra, when I came in and they knew I would have to repeat it. So when I started it in February, the teacher said to the class, "Okay, none of you can ask questions, only Barbara, because she really never took it before." And I got into honors English class that I was in, and honors history.I eventually made the honor roll. I continued talking to Frieda, and I knew that Frieda wanted to go to college. Judy and Frieda told me about the Office of Vocational Rehabilitation sending people with disabilities to college.
Jacobson
The Office of Voc Rehab is now called the Department of Rehabilitation.
Linn
Not in New York.
Jacobson
No? What's it called?
Linn
It's called Vocational and Educational Services for Individuals with Disabilities [VESID].
Jacobson
Okay, so what help did you get?
Linn
I was lucky. Because I knew so much by talking with Frieda and Judy [Heumann] and other people that I called them in my junior year. I was assigned a counselor. Whereas the people who waited for the counselor to come in their senior year, they got a bitchy counselor. I got a wonderful counselor. And her name was Thelma Kaufman.
Jacobson
And what happened?
I wanted to major in journalism. I was making a choice between LIU [Long Island University] and NYU [New York University]. I decided to go to NYU basically because Frieda was there.
Selects New York University, 1969
JacobsonAt this point, you started to hang out with more people with disabilities? You went to NYU. Had there been a disabled program at NYU?
Linn
No. I [inaudible]. You know, before I got accepted, I had to go see the health services. So it was real, it was like where you could look at it like a really discriminated interview.
Jacobson
Did they make all incoming students with disabilities come through that interview with health services?
Linn
That's what I believe.
Jacobson
What was the point? Do you know?
Linn
I couldn't figure that out. But I knew that everybody else didn't have to go through that process.
Jacobson
What was the interview like?
Linn
I don't remember it. I don't remember that interview. I remember after that having to meet with a counselor in Admissions. I remember he said, "Well, you're great, we're very glad--what happened on your SATs?" I said, "I don't take tests real good." But there was no disabled office at NYU at the time. There wasn't even a ramp to get into Frieda's dorm.
Jacobson
So Frieda lived in the dorm?
Linn
Right.
Jacobson
How did Frieda get into the dorm if there was no ramp?
Linn
The way I remember it is that it was just a couple of steps, and she would get people to lift her, if I'm remembering that correctly. I also remember, the funny thing, when students were moving in or out, they would put up a portable ramp. But they would take it down during the year. When Frieda asked, they said that it wasn't secure enough. But Frieda really was determined and later, after she got there, like she was making sure that when they built the new library that it would be totally accessible. At that time, we're talking about 1969, 1970, even the Loeb Student Center wasn't at all accessible.
Jacobson
So Frieda was quite an activist.
Right.
Jacobson
What we have to say is that simultaneously with Frieda going to college and everything, DIA [Disabled in Action] was started.
Jacobson
I think that is where we are going to go next. Do you want to talk about that or should we stop?
Linn
I think we probably should stop.
Jacobson
OK, Bobbi, let's stop. Is there anything you want to add about what we talked about?
Linn
Well I don't want to forget to say that at NYU I got so involved in organizing, that the semester that Frieda wasn't there, I even got elected vice president of the student group.
Jacobson
Wow. You really were working in politics.
Linn
Yes.
Jacobson
Do you remember what caused you to become an activist?
Linn
It became like a natural funnel for all my anger and all my fury that I never had a place to put appropriately before.
Jacobson
What was going on at your campus at the time? We are talking about '69.
Linn
I remember that Kent State was happening at that time. I remember sitting in Frieda's dorm room and watching the scene from Ohio. It was like a very, it was a time that people really took large stands on things. At NYU people were not listening to [inaudible] and the first example that I gave--
Jacobson
About the ramp?
Linn
Right. Right.
Becomes activist through Disabled In Action
JacobsonAnd then you became an activist.
Linn
But I think it started on the outside. Then I was able to transfer it--it started with DIA, and then I was able to transfer it into what I was doing in NYU.
Jacobson
Okay. Do you think that it had anything to do with your being more involved with people with disabilities?
Linn
Definitely. Because knowing Judy, and if you wanted to stay with Judy, you really have to put your ass on the picket line.
Were you friendly with Judy before DIA?
Linn
Everybody was friendly with Judy. I mean, that's the way she is. I mean, when DIA meetings started to meet at her mother's house, when she broke her leg one spring, I remember having more of a personal relationship.
Jacobson
You said everybody was friendly with Judy. What was it about her that made that happen?
Linn
She seemed to be the center of a lot of things. And she really was an organizer. She made people want to become involved.
Jacobson
Do you have any idea where she got that from?
Linn
Oh, yes. I had the great honor of knowing both of her parents and they were people that always had a social conscience. Always went the extra mile. And they never, they never let status quo happen. My favorite of the Heumann stories is when Judy was about to enter high school and at that point the high school philosophy was, people with disabilities didn't go to high school. They stayed on home instruction. And that, of course, Mrs. Heumann wouldn't let that go.
Jacobson
What year was that?
Linn
I'm not sure. But after--
So people on the board of education said to Mrs. Heumann, "If you stop making all this noise, we'll make sure Judy gets into a high school."She looked at them and said, "Judy and every other kid."
Jacobson
I wonder when that was because I know when I was in public school, they kept the disabled kids until they were twenty-one. And so a lot of the older kids went to high school about 1960 or so.
Linn
If Judy graduated college in 1968, I think--
Jacobson
Did she take a semester or two off when she had the back surgery?
Linn
Wait a minute. In '65, the first summer I met her she was supposed to begin college. Four years before '65.
Jacobson
1961.
Linn
Yes.
Jacobson
Now I wonder if that happened just in Brooklyn?
Linn
It could be that Mrs. Heumann was a good planner and she started a couple of years prior to when Judy was supposed to go to high school.
That's an interesting research point because of the different boroughs in New York. Every borough had a board of education, didn't they?
Linn
I don't remember that.
Jacobson
Okay. So why don't we stop at that point unless you want to say something?
Linn
No. No.
Jacobson
Okay. Let's take a break and we'll come back and talk about DIA.
II. Disabled In Action; and Advocacy Counselor Job, 1969-1983
Disabled In Action established, 1969
Bobbi, I wanted to ask you about DIA. Why was it started? When was it started? And what was your role in it?
Linn
Well, I remember it starting in the spring of 1969. I remember that it started as an outgrowth of Judy Heumann's lawsuit against the board of education. Judy sued them because they denied her a teaching license. She got some good publicity around it. One day--all during the publicity, she would get various calls from various people that said, "I've been discriminated in this way, and I was discriminated, I didn't get a job over there." One of the reporters said, "What are you going to do about these issues?" Right off the top of her head, Judy responded, "We're going to start a group that deals with people's discrimination against people with disabilities." They asked her, "Well, when are you starting it?" Off the top of her head she said, "At the end of the month."
Jacobson
That sounds a lot like Judy.
Linn
I remember the first meeting. It was pretty much the group at LIU and the group, PUSH [People United in Support of the Handicapped] from Hofstra University and some other people who may have gone to Camp Jened.
Jacobson
You mean the disabled student group at LIU?
Linn
Right.
Jacobson
And you remember what that was called?
Linn
No, I don't.
Jacobson
It was the Handicapped Integration Movement. They called it HIM. What did PUSH stand for?
People United in Support of the Handicapped.
Jacobson
So these groups were operating before DIA?
Linn
Yes. These two universities had large populations of disabled people. But with New York's large population, that could mean fifteen disabled students or so.
Jacobson
How many people were at that first DIA meeting?
Linn
We don't know. It's hard to judge because I don't know. It always seems like more. But I'm betting that about fifty people were at the original meeting.
Jacobson
At that time that was a large group.
Linn
Right.
Jacobson
And so what happened?
Linn
Well, they elected a steering committee, I mean, to make bylaws and begin to consolidate into one organization. Or not consolidate, because each individual group was still going to be out on their own right on their own college campus. But for off the campus, they wanted a unified umbrella group.
Jacobson
It seemed like it was the right time and people were ripe for organizing.
Linn
Well, I think it was the right time in that everybody was excited by Judy getting her teacher's license. And it was, the people were ripe because sometimes I think of Camp Jened as the training ground where people learned that they had the same rights as everybody else and a lot of the original people were people from Jened.
Jacobson
You said they started to get the idea at Camp Jened. Why do you think that was so?
Linn
Jened allowed a lot of disabled people to just be people, to learn about each other, and not be considered as a separate group of people. And I think that was a very important head set for the people who came after that and were then going to college and were then facing obstacles.
Jacobson
Okay. Do you remember Judy at that first DIA meeting?
Linn
I believe so, because Judy was being Judy.
Jacobson
How?
Linn
When she had a lot of ideas, she had, seemed to have a lot of experience talking the points. And she did have a way of mobilizing people.
Jacobson
Do you happen to remember any of the things she said at that meeting that were able to strike a nerve in the group?
No. That kind of detail, I don't remember it. I only remember a feeling, there was a great feeling of solidarity.
Jacobson
Then what?
Linn
Well, I believe at that first meeting, the group picked a name which was Handicapped in Action, HIA. And it was really funny. Judy was on some kind of television show right about that time. And she was introduced as somebody from DIA. I was going bananas wondering how the name got changed since we all agreed upon a name. But there was a steering committee of some very strong people. And some very strong personalities. There was Judy and Denise McQuade. There was Frieda Tankus. There was Jimmy Lynch. And there was Ronnie Stiers. Susan Marcus also. But Susan was the treasurer. She had the smarts to control the money--she was someone who worked for the income tax division.
Jacobson
Why did HIA become DIA?
Linn
If I remember correctly, they were trying to get publicity. And that year, Danny Kaye was on Broadway. Danny Kaye had broken his leg, but he was performing the role on crutches, and we were going to give him an award. When he heard it was Handicapped in Action, he thought it was a war veterans group, and you have to realize that was the year of the Vietnam controversy. A lot of people looked at the veteran's associations with different eyes.
Jacobson
So who decided to change the name?
Linn
As I say, I wasn't in on that discussion. And I just heard about it on the television show.
Jacobson
So this was a local television show?
Linn
I guess it must have been.
Jacobson
So I want to know about the structure, and the funding, and how often did the DIA meet?
Linn
Well, there was a board of directors, the people that I've already mentioned--
Jacobson
So the steering committee became the board of directors.
Linn
Right. There were various committees. I remember strongly that there was a transportation committee because that seemed like one of the biggest problems affecting disabled people. And that was headed by Ronnie Stiers. Sometimes I think back at what she was working on in 1970, and I see it implemented, like, in the last ten years under the ADA [Americans with Disabilities Act], and Ronnie died early and wasn't around to see any of it materialize. She was really a very bright woman.
Jacobson
Do you remember what her background was?
Linn
No. All I really remember was that she was so severely disabled that she kind of, she didn't leave her house. We would have meetings at her house to get her input.
What was her disability?
Linn
Actually, it was muscular dystrophy.
Jacobson
And she was in a wheelchair?
Linn
Yes. She was severely disabled.
Jacobson
Where did she live?
Linn
She lived on Ocean Parkway in Brooklyn.
Jacobson
How did, was she at Camp Jened?
Linn
No. I don't know how she got involved. I would think that she was probably having college through the telephone. I don't remember what they used to call that. So a bunch of people told her about it. And that's how she got involved.
Jacobson
And do you remember when she died? What year?
Linn
No. No. I don't.
Jacobson
Is there, what other committees?
Linn
I think that there was an education committee. And there was an administrative group committee.
Jacobson
Like a publicity--?
Linn
Well, it was getting the word out. And that's for--
Jacobson
You mean them getting their news out to their membership?
Linn
Right.
Judy Heumann's influence in DIA
JacobsonHow did you become a member of it? How did anybody become a member?
Linn
You would call Judy, and Judy would tell you you've got to come to this meeting and you've got to do this and that. I also, I used it as a way to meet people. And it's really funny. I have these memories that as DIA got more established, the phone would ring at seven o'clock in the morning and it would be Judy. Judy--I was a college kid, so I had more time than she would because she was a school teacher with a set schedule. And she would ask me to do something that day and I would say, "No." And her comeback was usually, "Bobbi, are you saying no because you really can't do it? Or are you saying no because you're pissed at me because I woke you up?"
What was your answer?
Linn
Most of the time I said, "Judy, let me go back to sleep!" But the funny thing is when she became the Assistant Secretary of the U.S. Department of Education, often I would get early morning phone calls from her. Not because she needed me to do things, but it was a time when she made phone calls. And it always cracked me up that Judy was still waking me up.
Jacobson
The people in DIA were from all over New York.
Linn
Yes.
Jacobson
All the five boroughs.
Linn
All the five boroughs plus Long Island. Susan Marcus and Jimmy Lynch lived in Nassau County.
Jacobson
Had they been part of PUSH?
Linn
I don't know.
Jacobson
Okay. Well, first of all, I take it that Judy won the lawsuit and became a teacher.
Linn
Well, the interesting part of that is that on the books, she didn't win.
Jacobson
On the what?
Linn
On the books. Because the board of education did not want to set a precedent, so they agreed to settle with her, but it was an out of court settlement.
Jacobson
And they did hire her?
Linn
Yes.
Jacobson
And that was what year?
Linn
I remember it to be about 1970.
Jacobson
Tell me more about what would happen in DIA.
Linn
Well I think I want to go back to the composition of the board because that made me a little, feeling a little out of it. Now I admit that I wasn't very together during that period. It also seemed to me that they didn't have anybody with cerebral palsy or anybody with a developmental disability on the board for a while. And that didn't feel so good to me. I remember talking to Judy about it and she offered me her seat. That would have been really ridiculous because she was the shining star that everybody followed. But other people told me, there was a guy named Fred Francis. He used to tell me, I don't know why he did this, but he called me a go-fer. You know what a go-fer is? And he said that they were using me as a go-fer. It didn't feel good at all and I don't understand why he was telling me that.
Who decided how many people would be on the board?
Linn
I don't remember details like that.
Jacobson
Okay. But there was this board with no one who had CP or a developmental disability? Okay, so what happened?
Linn
I remember meeting two friends at a meeting at Judy's house one night. Pat [Patricio] Figueroa and Pat Payne. And the minute I found out that Figueroa had a car and was coming from the Bronx, I figured I wanted him to be a good friend of mine because I was using the subways to get all over.
Jacobson
At this point, you were still at NYU, but you were living in the Bronx?
Linn
Right. Right.
Jacobson
Do you remember how Pat Figueroa got involved?
Linn
Pat Figueroa and Pat Payne were friends. Pat Payne needed a ramp into her city housing. She was living in the projects and they were giving her problems in getting a ramp. And so she called Judy and said, "What do you know about--?" And she said, "Why don't you come over Sunday, we're having a meeting."
Jacobson
How often did they have meetings?
Linn
I think it was monthly. But you would have committee meetings between the monthly meetings.
Jacobson
Tell me about the meetings that were held at Judy's house.
Linn
There were people sitting on the floor, sitting on couches, people in wheelchairs. There would always be coffee and cake and stuff.
Jacobson
Where was Judy living?
Linn
Judy was living at Willoughby Street which was in downtown Brooklyn, at the time, in a residence owned by Long Island University.
Jacobson
Okay. Were there just disabled people at the meetings?
Linn
There were several nondisabled people who were interested in what we were doing and came also.
Jacobson
So what would happen?
Linn
It was like an organization. It was like 95 percent bullshit and 5 percent business.
Jacobson
I'm going to turn the tape over.
What kind of business?
Linn
How to get the word out what our goals were. What our bylaws really should say.
Jacobson
And what were the goals?
Linn
To get equal rights for people with disabilities across the board.
Jacobson
Can you elaborate on that sentence?
Linn
OK. So--
Jacobson
Were you talking about jobs and education? And transportation? What were the needs at that time?
Linn
And affordable housing. Those were the main issues. And they are still the main issues.
Life as a disabled person in New York in the 1960s
JacobsonOkay. I want to know what was it like in New York for a disabled person at that time?
Linn
Well, the only way people could get around if they didn't drive and if their parents didn't take them was by ambulette which cost an enormous amount of money. Most of the schools in New York City like most of the City Colleges were inaccessible. I already said how the New York City Housing Authority wouldn't put up a ramp for a woman who used a wheelchair and [inaudible] fought it. There was no way that a disabled person could get into city hall.
Jacobson
You said there were access issues across the board.
Linn
There was also a feeling of discrimination. Like I remember more than a feeling, I needed to take my test at NYU separately. I had something pre-arranged with one of the counselors where I would take the test or they would be dropped off at a counselor's office. I would use an electric typewriter. One of the professors didn't want to hear that his test would get out and that everybody would see it and he refused to go along with it. I decided that the guy was so stupid that it would probably affect my grade if I fought it. So I decided not to fight it. I changed my major because you needed American history to become a journalism major.
Jacobson
What did you change your major to?
Linn
Sociology. I can't tell you why, but that was like, I know that the courses weren't as hard as psychology, but I guess that was what it was.
Jacobson
So that situation really affected your whole goal of your college activity.
Yes, when I look back on it, I don't think I would have been such a terrific journalist anyway.
Jacobson
Well, there is always hindsight and it's easier to see it afterwards. But, really what you're saying, I think, is that the discrimination really affected people's lives.
Linn
Right. I remember being a junior in college and thinking that I might want to be a social worker. Why I would have thought that, I have no idea. But I decided to call the NYU School of Social Work and talk to them about it. So I was granted--which was a real bad idea--but I was granted an interview with this really bitchy professor who said to me, "If you want to work with people, why don't you become a receptionist?"
Jacobson
She didn't have a clue.
Linn
But I remember going back to Judy's apartment and it was one of the few nights that Judy and I were pretty much loaded, I was telling her this. She just said nothing and then she just wanted to make orange juice and she couldn't reach the ice cubes in the refrigerator. And I said, "But I could." She said to me, "Oh, I thought your speech would get in the way."
Jacobson
She really got her point across. [Laughs] I just wanted to go back a little bit. You were telling me something before the interview about dinners at Judy's parents' house.
Linn
Yes. After Judy moved out of the city in '72, and every time she would come home, her mom would get dinner and the same regulars were invited. So if you didn't know the people when the dinners first started, after a few years everybody knew everybody. And it was a wonderful exchange. Usually, there always was an argument going on between Judy and her father. They both had such passionate viewpoints. And most of the time they were on opposite ends of the field.
Jacobson
What would they argue?
Linn
I'm bringing you such tidbits and you're wanting--I can't remember.
Jacobson
What was the nature of the arguments?
Linn
Political. Like I know that it wasn't one of the arguments, but what remains clear to my mind is, I think it was in the eighties when Jesse Jackson was making a run for the White House. And he was going across the country and staying in people's houses. He asked Judy if he could stay in her house. And she thought that this was really interesting because of his viewpoint and what he had said about Jewish people. Her father said to her, "No way. You can't let that man sleep at our house."
DIA activities
JacobsonTell me some more about DIA. Tell me some more activities of DIA.
I remember going with Judy to meet, like, political candidates running for city council. And I remember passing out leaflets about laws in front of A&S [department store] in Brooklyn.
Jacobson
About what?
Linn
Laws. I remember--this is embarrassing. I remember going to a demonstration in front of the New York Times because they had such a shitty policy on writing on disabled issues. And a group of us got hungry and we went to lunch in the middle of this picket line. Judy told us you never go to lunch when you're on a picket line.
Jacobson
Where did DIA get its funding?
Linn
Well, that's a difficult question. It never had real funding. I think membership dues.
Jacobson
And how much for members?
Linn
I think it was five dollars for a nonworking person and twenty-five dollars for a working person.
Jacobson
Per year?
Linn
Yes.
Jacobson
Did you ever have any idea what the size of membership was?
Linn
Less than a hundred. Like a year or two after the beginning, but less than a hundred.
Jacobson
You said there were demonstrations against the New York Times. What other kinds of demonstrations?
Linn
Well, I remember a sit-in in 1972 in the reelection offices of Richard Nixon. And that was exciting. I mean, they didn't know what to do with us.
Jacobson
And this is in New York?
Linn
Yes.
Jacobson
So it wasn't just local [issues].
Linn
I don't think so. I think DIA was the impetus for a lot of things across the country. One of the things that we did every year was go down for the annual meeting of the President's Committee on the Employment of the Handicapped. We were the ones who started asking questions about the reality of what they were predicting to the reality of what the life as a disabled person really was. And then we, we were influencing the minds of people who were disabled people, but not activists, until they met us and looked at things in a different light. I think as a result of this there were other DIA chapters forming. There was one in Pennsylvania and one in New Jersey. And I think there was one upstate in Syracuse.
Was there one in Boston?
Linn
I don't know. I don't think I ever heard of one.
Jacobson
This would have been '73 or '74? Can you remember what year this happened?
Linn
It would have been '73, I think.
Jacobson
There were other groups around at the time for people with disabilities. But they weren't activists.
Linn
Right.
Jacobson
Could you tell me about some of them?
Linn
Well, could I go back to the fact that I'm not sure that DIA should be considered a local organization which sort of ties into your last question. One of the people that Judy met with and who had an understanding of disability politics was Nancy Wesselman-Deibler of United Cerebral Palsy [Associations, UCPA, Inc.]. And in 1973, there was a, why can't I think? There was an all night vigil outside the Lincoln Memorial because the Lincoln Memorial was inaccessible to any person with a mobility disability.
Jacobson
I guess I want to clarify that this was UCPA national. Right?
Linn
Right.
Jacobson
Because UCP has local affiliates and then they have a national office. At this time, Judy was where? Was she in New York?
Linn
Judy had left in the fall of 1972 to get a master's in Berkeley, California [University of California at Berkeley]. 1972 was a year of change. Frieda Tankus had died in July of '72. Judy was going to school and was leaving New York. And I'm not sure whether Denise McQuade or Angela Thompson became the new president of DIA.
Jacobson
How did DIA hook up with Nancy?
Linn
I think it was that Judy--that maybe Nancy read something about Judy or they met at some kind of meeting or something.
DIA and United Cerebral Palsy Association march in Washington, DC
JacobsonOkay. And they decided that--
Linn
Well, it was a question of, "Well, what do you think UCP can do for us?" And Nancy was like walking a real tightrope in that the people who ran UCP were basically a conservative group of people. Not really ready to deal with this bunch of kids who were radicals who all had disabilities.
Okay. So how did this come about?
Linn
Well, there was a demonstration in front of the Lincoln Memorial.
Jacobson
How did people get down to Washington if transportation was so difficult? How did all these disabled people get down to Washington?
Linn
Well, I don't remember. But certain of the people drove. I remember you and I were in a car with Susan Marcus, and some people took the train.
Jacobson
Most people who used wheelchairs at that time used manual wheelchairs. They would fold them up and put them in the trunk of the car. So you all got down there. What role did UCP play in it?
Linn
UCP had gotten the park permit and got the food donated and wanted to keep it very simple and very nonthreatening.
Jacobson
Was this also coinciding with the annual meeting of the President's Committee. How many people do you think got out there?
Linn
Yes. I would say between sixty and eighty people, individuals, I don't know how many stayed the whole time. I know that I didn't. But I remember that Denise McQuade did.
Jacobson
And then what happened?
Linn
Several years later, I came back and there was an elevator put into the Lincoln Memorial. And that felt so wonderful that we could really see some substantial changes.
Jacobson
Okay. So that sounded like a very successful event.
Linn
It was. Because we also had a march to Congress. It was successful in the eyes of us people with disabilities. I don't think that the powers that be from UCP were that thrilled with the whole event.
Jacobson
When did you march on the Capitol?
Linn
Well, there were several, but I'm talking about the march right after the vigil at the Lincoln Memorial.
Jacobson
In the morning?
Linn
Yes.
DIA and the Mayor's Office of the Handicapped
JacobsonSo that was involvement with UCP. What about--Let's go back to New York. There was some involvement with the Mayor's Office of the Handicapped?
Yes, I think that was '71 or '70.
Jacobson
Can you tell me a little bit about that office and how it came to be--
Linn
I'm not exactly sure how it came to be. I know that it was supposed to do things for disabled people but there was only one individual, Eunice Fiorito, a blind woman, who was on staff at the time. And I remember this real funny situation about how Judy and I went to a meeting with--
So you and Judy Heumann meet with Eunice Fiorito and her supervisor.
Linn
Right. It was a late afternoon meeting. And at some point we found out that none of the elevators were working. And we're up at the fifth or the sixth floor.
Jacobson
Was the office at city hall?
Linn
No. It was one of the buildings around city hall.
Jacobson
Okay.
Linn
Eunice's supervisor decides that he was going to go--He walks down the steps and leaves a person in a wheelchair, a blind woman and a woman with cerebral palsy on the seventh floor with no way to get down. And we were, like, appalled. We couldn't figure out how to get out of there. And suddenly, of course, Judy had her mother on the phone and Mrs. Heumann called the Daily News. They were interested in this story. That's how we got them to come back and work on the elevator. The funny thing is, I was supposed to go to a birthday party that night, and I kept calling them back, "I'll be later. I'll be later."
Jacobson
I want to know what went on in that meeting.
Linn
Denise, I have a good memory, but I don't have memory for details like--
Jacobson
What were the meetings about between DIA and the mayor's office? Was the mayor's office sensitive to the issues?
Linn
Well, let's put it this way. Eunice was very sensitive. The rest of the city administration didn't give a damn. And they didn't understand why they should give a damn.
Jacobson
So, do you think that they just created that office as a way to placate people or were there some issues that they tried to resolve?
Linn
They probably didn't at first. They created the office to placate. But Eunice--and later there was more staff, and they were interested in doing a lot more than placating.
Jacobson
Okay. One more question. Do you think that DIA was the force behind the creation of the office?
Yes, because DIA was the most vocal kid on the block.
Jacobson
Who were the other kids on the block?
Linn
I knew you were going to say that. I think all along there were organizations for the blind. I know--
Jacobson
What was the organization Anna Fay was in?
Linn
NPF [National Paraplegia Foundation]. The National Association--
Jacobson
National Paraplegia Foundation [NPF].
Linn
Yes.
Jacobson
What about ABC [Architectural Barriers Committee]?
Linn
ABC, my recollection was that they were operating on the Island.
Jacobson
What did ABC stand for?
Linn
Architectural Barriers Committee.
Jacobson
That was working on Long Island. Did you have any idea what NPF was doing?
Linn
In the early '70s, I know that they worked on a survey of accessible sites in New York.
Jacobson
What was that?
Linn
They did a survey and--
Jacobson
A survey. Okay. They weren't coming out and demonstrating?
Linn
For the most part, I don't remember them doing that.
Jacobson
It was DIA. DIA also demonstrated against telethons. Right?
Linn
Right.
Jacobson
Against muscular dystrophy?
Linn
I remember that there was a line, a picket line around the muscular dystrophy telethon.
Jacobson
And UCP?
Linn
I don't remember a picket line, I remember that we were forming a committee to somewhat change it, which I don't know--
Jacobson
To what?
To look at the telethon and to maybe recommend some changes.
Jacobson
Okay. What did DIA have against telethons?
Linn
Well, the whole image of pity. Pity the poor person, pity the parents whose child has MD. And this still sucks.
Jacobson
Okay. So the mayor's office grew in staff. How big a staff?
Linn
I remember that there were about ten or twelve people at the height of it.
Jacobson
Okay. But at first it was only--
Linn
Only Eunice.
Jacobson
No secretary.
Linn
I don't remember. I would imagine she had to have a secretary.
Jacobson
And where did she come from? What was her background?
Linn
She was a social worker.
Jacobson
Okay. She was appointed?
Linn
Yes.
Jacobson
Who was mayor at the time?
Linn
I'm not, I think it could have been the person before [Edward] Koch whether that was [John V.] Lindsay or [Abraham] Beame, I'm not sure.
Jacobson
How did you see DIA develop? I know Judy left in '72. What happened when she left?
Linn
Well, there were more people coming in and new blood. Some of the people were more radical than even we, we thought that we were radical but--This was a time when--Well, Frieda Zames came on the scene and other people, Kip Watson and Angela Thompson.
Jacobson
So the meetings were no longer held in Judy's apartment?
Linn
No. We used to meet at the Rusk Institute [a.k.a. IRM--Institute of Rehabilitation Medicine].
Jacobson
But how many people came to meetings?
Linn
It depended on the meeting, there might have been fifteen or there might have been five.
Jacobson
Fifteen or fifty?
Fifteen.
Disabled Students Program at New York University
JacobsonOkay. So, there were new people and there was new blood. What were some of the key actions?
Linn
I'm having trouble focusing between 1974 and '77, and part of that is because I kind of withdrew from the movement during that time.
Jacobson
Okay. And at that time, were you in grad school?
Linn
Well, I had dropped out of grad school at one point. And I got back in slowly. And I'd started back in January of '75.
Jacobson
Okay. And that was still at NYU?
Linn
Right.
Jacobson
Did things change at NYU? NYU started a disabled students union. When did that happen?
Linn
That was in the spring of '71, '72.
Jacobson
Okay. And was it still going on when you were in--
Linn
I don't think so, because I think that there was a disabled student coordinator. And I think, actually there was a group of students, now that I think about it. Because when we left, I think Pat Figueroa came on campus for his master's, and he might have gotten more involved. Because I remember, by the autumn of 1977, I had even interviewed for the job as the coordinator of the disabled students.
Jacobson
So things did change.
Linn
Yes.
Jacobson
And what would that coordinator do?
Linn
Well, the coordinator helped disabled students with campus, like he would be the intermediate between me and the history teacher that I talked about before. He would have helped me take my test. He might argue with the administration for more accessibility.
Jacobson
When you were back in grad school, did you still have to deal with having an interview with health services?
Linn
No.
Did they abolish that?
Linn
I think so.
Jacobson
We're up to around '77?
Linn
What I do want to say is, in my graduate years is when I was still having problems with my emotional disability. And I spent like a year and a half at home doing nothing before I went back to graduate school.
Jacobson
Do you happen to have any memory of the issues around 504? The Rehabilitation Act [Rehabilitation Act of 1973]?
Linn
Well, I know that in '72, Nixon had vetoed the act.
Jacobson
The what?
Linn
The act. I know that we had gone down to the Capitol to lobby and I'll never forget this. This was really funny. I was put in a lobbying group with my good friend Pat Figueroa, and every different senator we saw, he had us coming from a different state. And I thought that was really funny.
American Coalition of Citizens with Disabilities, 1977
JacobsonBut the act was still vetoed.
Linn
Right. But I think it was signed in 1973. But the regulations for the implementation were not signed. And I think it was in '77, the spring of '77, that the American Coalition of Citizens with Disabilities [ACCD] decided that enough was enough, and decided that there had to be some sit-ins in the HEW [State Department of Health Education and Welfare] offices. I remember that that spring, I was supposed, I was graduating with my master's. And I didn't take part in any of the actions. But I remember hearing something on the radio three weeks later about the folks in California still being there. I thought, "Oh, my God," because I had no idea this was going on.
Jacobson
You didn't know about the action taking place in New York?
Linn
I did. I did. But I had to make a decision if I was going to be a radical or if I was going to get my master's, and I chose to get my master's.
Jacobson
Okay. You mentioned something about ACCD. Do you have any knowledge of how that organization came about?
Linn
My assumption is that people continued to gather at the President's Committee on the Employment of the Handicapped.
Jacobson
They would meet every April.
Right. And people from other parts of the country were saying that there was a need for a national group.
Jacobson
Okay. Do you remember what year it came about?
Linn
No.
Jacobson
Okay. Does DIA still exist?
Linn
Yes. DIA still exists today.
Jacobson
And who's running it?
Linn
Frieda Zames is still there. And there are other people.
Jacobson
How does it interface with the independent living movement?
Linn
That's usually a little rough because they see us as the paid people who only go to things because we're getting paid for it, and who won't come out radically because if we vote, our budgets will be cut or they will be audited.
Jacobson
So it sounds like there is friction.
Linn
There's friction and, but, there is always friction among groups. And I don't know that they're getting any more friction.
Jacobson
Okay. What are their activities? Do you know?
Linn
Well, they were very active with WID [World Institute on Disability].
Jacobson
With WID?
Linn
WID worked with the assisted suicide decision. And I think that they will be very active in how Olmstead [Olmstead v. L. C., 1999] gets instituted in New York.
Jacobson
Okay. What about the Americans with Disabilities Act? Were they instrumental in drafting or--
Linn
I'm not sure. In this city, I know that a lot of the transportation parts of that were written by the Eastern Paralyzed Veterans of America [EPVA].
Jacobson
They're still around?
Linn
And better than ever. They're really cool.
Jacobson
EPA?
Linn
EPVA.
Jacobson
Well, what are they doing now that is so cool?
They have this lawyer, Jim Weisman, who did parts of the ADA. And they did work on the accessible taxi campaign, and, like, they are a group that has some real money. They don't appear radical, but they pull off their actions well, and they usually get things done in a more logical fashion.
Jacobson
It sounds really strategic. Did DIA have a strategy or was it really issue focused?
Linn
I think it went from issue to issue focused.
Jacobson
Okay. In the Eastern Paralyzed Veterans are they just made up of veterans?
Linn
No. There are non-vets that work there. What I should say is that in 1980, they were the people that sued the state of New York. And as a result of that suit, they brought about accessible buses in the city, and the agreement called for a number of subway stations to be accessible also. And it's interesting, they don't go in for demonstrations. So what's interesting, the community had a sit-in at the Metropolitan Transportation Authority [MTA] and they didn't come but it was like we were working on the same issue but from various sides of it.
Beginnings of the Center for Independence of the Disabled in New York, 1978
JacobsonAt that time, who were you with?
Linn
I was with the Center for Independence of the Disabled in New York. Better known as CIDNY.
Jacobson
Okay. So maybe we could move on and keep talking about that. Could you tell me something about how CIDNY began?
Linn
Well, the NPF [National Paraplegia Foundation] wrote a grant for a research and demonstration project.
Jacobson
Now NPF, the National Paraplegia Foundation--
Linn
Yes.
Jacobson
Is made up of whom?
Linn
It was made up of people with disabilities. The board, part of their mission was research to find cures for paraplegia. And CIDNY opened its doors in February, 1978.
Jacobson
They got a grant. A federal grant?
Linn
Right. I think it was state, but I'm not sure.
Jacobson
Who were the people involved in it?
Well, the people who wrote it were like people from NPF. But at that point or right after it came in, Elaine Pomrantz--
Elaine Pomrantz and Julia Schecter. Were they part of a group?
Linn
They were part of, they were part of NPF, and I guess at some point, CIDNY was incorporated as its own 503 corporation.
Jacobson
Okay.
Linn
Pat Figueroa was interviewed and got the job as executive director. One of my funny memories is I remember talking to Mrs. Heumann, at this point. She said, "There is this job. Why don't you apply for it?" I looked at the job descriptions for the executive director and there was a job for a coordinator for attendant care. I decided that I would be more a coordinator than an executive director. I was interviewed for the coordinator, but I didn't get it. My friend, who I had gone to graduate school with, Ann Marie Tully got that job.
Jacobson
Where was this set up?
Linn
The first office was in the EPVA building on, they don't, they didn't own the building. They rented space. And there was an office on the high floor. So that was on Park Avenue South. And when I joined the firm, they then relocated to Fourteenth Street and Broadway.
Jacobson
And were they serving just Manhattan?
Linn
At that point, we were serving everybody except for Brooklyn because there was a center developing in Brooklyn.
Jacobson
Okay. Can you tell me a little bit about what CIDNY did?
Linn
Well, CIDNY began as a place where people who needed personal care attendants could call, and the attendant was someone screened by the coordinator.
Jacobson
They were screened?
Linn
The coordinator would meet with each attendant. And it would be either yes or no. This person might be called. This person I wouldn't send to anybody's home. After a year and a half they got another grant. This second one was a federal grant for independent living. So that is how we were able to hire a housing counselor and an advocacy counselor.
Jacobson
At the beginning, was it just for attendant care?
Linn
Yes. But they were getting a lot more calls. So they were keeping a log of what type of calls was coming in. So when they wrote for a new grant, they knew what the needs in the community were.
How did word get out that there was this new organization?
Linn
Well, pretty much word of mouth. Pretty much we would go on speaking engagements. I remember going on my first outreach. And every time Pat Figueroa would tell me, "Don't worry, if you say anything I don't agree with, I can always tell them you lied."
Jacobson
Where were you doing outreach?
Linn
We did some outreach at the Rusk Institute. We did some outreach at ICD. We went to public--
Jacobson
ICD?
Linn
The International Center on Disability.
Jacobson
Okay. Where else?
Linn
Various places where disabled people went.
Jacobson
Like hospitals.
Linn
Right.
Jacobson
Who was on the board of directors?
Linn
Elaine Pomrantz.
Jacobson
Who was Elaine Pomrantz?
Linn
Elaine was somebody that we knew from Camp Jened. But she was, she was also a graduate of Brooklyn College, and had her master's degree in rehabilitation and lived in Brooklyn.
Jacobson
Where did she work?
Linn
She worked for the Brooklyn Developmental Center.
Jacobson
How about Julia Schecter?
Linn
Julia Schecter was also a person with a Masters in rehabilitation. When she was a young woman, she became disabled as a result of a car accident, I think, in her late 20s or early 30s.
Jacobson
And Elaine had polio.
Linn
Right.
Jacobson
And used a wheelchair.
Linn
Julia also used a wheelchair.
Who else worked?
Linn
There was Carr Massi. She worked as a secretary at the Rusk Institute. She was a small woman. I think she might have had spinal bifida.
Jacobson
Okay. Briefly, in one sentence, tell me what the Rusk Institute is?
Linn
The Rusk Institute is a rehabilitation center that ran some neat programs and they had a work study summer program for disabled students.
Jacobson
When?
Linn
Beginning in the 1960s, late sixties.
Jacobson
Wow. So, they were doing that so that disabled students could get work experience?
Linn
Yes.
Jacobson
Okay. We talked a little bit about this, but was there any interaction between DIA and CIDNY?
Linn
Well, we sometimes worked with them like we did when we had the sit-in at the MTA. That was so funny how we got so many people up to the floor just by saying, "Don't you have the letter? Don't you have the letter." The guards didn't know what was going on, and we got about twenty people up there.
Jacobson
What was the population that CIDNY served?
Linn
It's amazing. We served people, at first, primarily, we served people who were physically disabled. Most of them were in wheelchairs. We were limited in our own thinking that we thought that people with retardation and people with, I don't want to get in trouble here, and I don't want to misdirect what CIDNY was about. But CIDNY, at the beginning, focused primarily on people with physical disabilities.
Jacobson
Okay. What about cross-culture?
Linn
Well, in New York City, you open your doors and you have a very cross-cultural population.
Jacobson
It's very diverse, yes. The staff was also very diverse. What was the mix?
Linn
I'm thinking that there were three counselors who were white, and there was Pat, who was Puerto Rican and black and disabled. So we covered three with Pat, and then we had different secretaries.
Jacobson
Was all the staff disabled?
Linn
No. We had some nondisabled staff, but the majority were.
Hired as advocacy counselor
JacobsonYou were the advocacy counselor. What did you advocate?
Linn
Love, peace, and rock and roll. Now, I always wanted to say that. We worked on problems people had with, with Medicaid and Social Security. My colleague and good buddy, Ann Marie Tully, and I wrote like the first self-support plan for the state. We worked with Social Security to get the work incentives implemented because like we would read about them in the red book. We would send the consumers to the local Social Security office in New York City. No such program. And so we did a lot of educating.
Jacobson
What was the red book?
Linn
Well, Social Security always has a book that they can dig into to update the work incentives. And it is usually red. My staff did a new training with Social Security. I was amazed, twenty years later they're still here using the same red book.
Jacobson
Bobbi, during your first few years, did you have any contact, or did the organization have any contact, with the Center for Independent Living in Berkeley?
Linn
Yes. Yes, we did. As I said we worked on the first plans for self-support. We were really on the phone with Berkeley, and they were coaching us all the way across the board. Every time Judy came back to New York, one of the places that she stopped was our office. Pat Figueroa went to a meeting, I believe it was in Michigan, that was the beginning of the formation of NCIL [National Council on Independent Living].
Jacobson
Do you remember what year?
Linn
I think it might have been '82, but I'm not sure.
Jacobson
Did Judy and Phil Draper come out and do a training?
Linn
Yes. But that was before I started. Pat and Ann Marie had gone to Albany for a week for that training.
Jacobson
Let's see. I am wondering about the attendant care. You would interview attendants and screen them, and then, what would happen?
Linn
When a consumer called who wanted an attendant, we gave them three names and told them, "These are people who said they could work these hours. You choose if you want any of them."
Jacobson
How was that attendant paid?
Linn
I believe that they were paid directly from Medicaid.
Jacobson
They would be employed by the consumer?
No. But the consumer could tell Medicaid, I think.
Jacobson
Are you saying the consumer had the power to--
Linn
No. And I'm missing a point here. I don't remember. As I said, I didn't get that job. Ann Marie got that job. And something's missing here that I'm not sure of. But right after that, instead of the city Medicaid paying the attendants directly, there became a system of vendors who hired and trained and paid home attendants. But the consumer really was still the employer.
Jacobson
But did they have the authority to choose who worked for them?
Linn
The way I remember it, it depended on what vendor agency they were part of. And that really hasn't changed that much today.
Jacobson
How can someone get vendorized?
Linn
Well--
Jacobson
Did CIDNY have anything to do with--
Linn
Yes. Yes. CIDNY was part of the discussion and then CIDNY became a vendor, as did another program called Concepts for Independence. It was even more flexible and had less rules than CIDNY. Marilyn Saviola will be able to explain this.
Jacobson
Okay. I want to get into the Bronx independent living center. Do you want me to stop here for now?
Linn
I'd like to. I'm a little tired.
Jacobson
So am I. So we'll continue next time.
III. Bronx Independent Living Services, 1983; Independent Living Concepts; and Questioning Efficacy of Independent Living Movement
Bronx Independent Living Services [BILS] grant, 1983
Tell me a little bit about how the Bronx Independent Living [Services] Center [BILS] began.
Linn
Well, it began with CIDNY writing a grant to open a center in the Bronx because there was legislation in 1982 that said like eight, nine more centers could open up in some specific counties. And the Bronx was one of the counties.
Jacobson
Are these counties in New York State?
Linn
Yes. The original grant was written for a specialized program and not having all the services of a CIL. There was supposed to be a legal component and a training department. I was supposed to be the part time program manager that was the link between CIDNY and CIDNY--BILS [Bronx Independent Living Services]. Basically because I was the one on staff who came from the Bronx. The first test I was given was to find a site in the Bronx, and so, for three months I walked around the Bronx trying to find a location.
Jacobson
And where did you establish--?
Linn
Well, finally I got an administrative assistant who was given a Bronx phone book and told to call every realtor in the Bronx and see if they had something appropriate. We found a location on Stratford Avenue in the east Bronx. What I didn't realize, at the time, was that the block we were on was the crack capital of the Bronx. We were well protected because right next to us, not that we knew it when we moved in, but everybody around us had something to do with drugs. At the same time, the people from the Department of Rehabilitation or whatever they were calling it that time, was telling CIDNY that they never realized that CIDNY meant to hold on to the Bronx. They
Jacobson
Can you clarify something? You said that you were well protected in the location.
Linn
I was being funny. I think that the guy next door to us was a drug dealer. That we were protected because it was his turf. But I have no proof of that and I probably shouldn't say that.
Jacobson
Okay. Okay. So go on about--
Linn
Okay. That was in the year 1983. That was exactly at the point that Pat Figueroa left CIDNY and Marilyn Saviola came in as director. Pat became a consultant to the Bronx program who also helped to look for a site.
Jacobson
Why did Pat leave?
Linn
I think that was a very stressful thing. He, along with running the center, he had also started a home care vendor program.
Jacobson
What was that called?
Linn
It was called CIDNY ILS [Independent Living Skills] and it's still in operation.
Jacobson
I mean that home care program.
Linn
The home care program was called CIDNY Independent Living Skills [ILS].
Jacobson
It was separate from the basic center?
Linn
Yes. It was separate. But it wasn't separate in that they had their own board because they were all under one board. So I don't think it was a separately incorporated thing. But I'm not sure. Pat, I love him, but he always, we didn't get a lot of information when we worked there. Like I know at other centers, Denise McQuade always knew what was going on because Sue Fonfa [head of the Brooklyn independent living program] would tell her. Pat would always not tell us unless we needed to know things.
Jacobson
You're talking about when Pat was director of CIDNY.
Linn
That's right. That's going to look horrible.
Jacobson
It's not uncommon in a group environment for there to be difficulty with communication between administration and staff. So, I'm just trying to get it clear in my own mind.
Linn
Okay.
Jacobson
So Pat left the director job and started CIDNY ILS.
Linn
No.
Okay.
Linn
You asked me why Pat left CIDNY. I said I didn't know but that he was carrying a lot on his shoulders because while he worked at CIDNY, he also opened CIDNY ILS, which was a separate home care program.
Jacobson
I understand. Okay. Is that before there was this ILS home care program? What were the services provided by CIDNY?
Linn
Well, we had peer counseling, advocacy counseling, housing information and referral.
Jacobson
Now, advocacy counseling, was that, like, benefits?
Linn
Yes. It was benefits. It was also helping, sitting on various committees to make changes systematically.
Jacobson
Committees outside the organization.
Linn
CIDNY, you're meeting with a committee outside the organization. Yes. There was a citywide committee to improve Medicaid. There were other committees.
Jacobson
Do you remember some of--?
Linn
I know one of the things that Ann Marie really started, Ann Marie Tully, and I was there, was a home care committee to work on the issue of personal care.
Jacobson
Okay. And did you also work with the Mayor's Office for the Physically Handicapped?
Linn
Yes. I don't think it was called the Mayor's Office for the Physically Handicapped. It was simply the Mayor's Office of the Handicapped. We went through various directors there. Some of them were very active and some of them were not.
Jacobson
When did Eunice Fiorito leave that office?
Linn
I think it was even prior to when I started at CIDNY. I think it was the end of 1979.
Jacobson
Okay. And she moved to Washington [DC] and became president of ACCD.
Linn
I'm not sure. I think that ACCD was formulated here in New York. Eunice played a large role getting it started from New York, but I'm not positive.
Jacobson
When she moved to Washington, did she work just for ACCD or did she have other employment?
Linn
I think that she was working for the Department of Rehabilitation Services, which was in the Department of Education. I'm not sure when the Department of Education became a separate department.
Okay. Anyway, let's get back to the Bronx. You said that it was the intention of, that it was the intention of Vocational Rehabilitation that the Bronx Center would always be an independent entity.
Linn
Right.
Jacobson
So what happened?
Linn
Well, there were various meetings. There were various discussions. Then the final decision made by the head of VESID was that it had to become, had to spin off and become its own not-for-profit entity.
Jacobson
Why?
Linn
Because they said that independent living centers are supposed to be community-based. Having the CIDNY board wasn't really a community base. And not having a total array of services in the Bronx wasn't what they intended.
Jacobson
Okay. What happened next?
Linn
From the CIDNY board, some people volunteered to come onto the BILS board at the beginning so that BILS could start the process of becoming an independent organization.
Appointed director of Bronx Independent Living Services
JacobsonIs that when you became director?
Linn
Yes. Yes.
Jacobson
Tell me a little bit about how or what the process was.
Linn
Well, I was written into the original grant as the part time program manager. So when the concept changed to having BILS as a separate entity, I came up to the bat and I was going to be the program director and then the executive director. I really--it's like nobody really interviewed me for the job. It was just a part of the proposal that Pat Figueroa had written, and it just came naturally.
Jacobson
Okay. So how did you establish the center as a separate entity?
Linn
Well, we filed papers to become a nonprofit. We had a lawyer who worked on the bylaws. We established an office. The woman who was starting to put together the Queens Independent Living Center, Susan Jouard, was very helpful to me...
Jacobson
So Susan--
Linn
Susan J-o-u-a-r-d.
Susan J-o-u-a-r-d.
Linn
She had help from Pat and Ann Marie.
Jacobson
So Susan Jouard was from Queens?
Linn
She was the executive director of the Queens Independent Living Center. Pat became, he was the first president of the Queens board after he left CIDNY.
Jacobson
Okay. Denise McQuade and Sue Fonfa were in Brooklyn?
Linn
Yes, because that center started in 1979. Brooklyn was one of the six original centers.
Jacobson
Where were the others?
Linn
There was one in Brooklyn, there was one in Albany, one in Utica, one in Rochester, and one in Buffalo.
Jacobson
So tell me about the Bronx center. What services did you provide? What was the population?
Linn
The majority of the consumers that come to BILS are minority people. The largest population is Hispanic, then African American, and the third being Caucasian.
Jacobson
Okay.
Linn
After being an original site for three or four years, we were able to find a bigger site in the east Bronx on Decatur Avenue where the center is located now.
Jacobson
How big is the staff?
Linn
Well, I don't believe it, but we have eighteen employees. When you think about something that started with a part time program manager and a full time administrative assistant, it's really something to be very proud of. Our second grant, after VESID, was from the Crime Victims Board to deal with people who were disabled and were crime victims and people who became disabled as a result of being victims of crime.
Jacobson
How do the consumers find out about the Bronx center?
Linn
Well, we try to get our name out and we try to write press releases, and get our literature out. But I don't think we've done enough, and yet, we have a lot of people coming to the center.
Jacobson
How many people do you serve?
Linn
Well, if you're asking how many people had case files, that's lower than how many people call the center and get information. That's about 2,000 individuals a year.
Jacobson
Who just call up. And how big is the caseload?
We have about 700 people that we really work closely with.
Services provided
JacobsonThat's quite a lot. What services do you provide?
Linn
We still provide peer counseling and housing information and advisement. We have crime victims services [services included individual and group counseling and help with claims registration, housing relocation, and applying for public assistance].
Jacobson
What was that?
Linn
Housing information and advisement.
Jacobson
Advisement?
Linn
Well, because there's such a vast housing shortage, if people come and say they want to move because a service is not being what they need in their building, we tell them how to work with them and work on possibly getting what they need so they won't have to move.
Jacobson
Okay. So, it's basically is largely about access.
Linn
Right.
Jacobson
Okay. What else?
Linn
We now have a program where we're seeing people who are on public assistance and helping them through the application for Social Security.
Jacobson
Okay. You said you now have the program. Did you not have it previously?
Linn
No. As I said our beginning program was from VESID, then we got the Crime Victims Program. Then we got federal money that came from the education, U.S. Department of Education. Then we had some short foundation grants for a while to do some services for high school students. And then we got Pride 2000, which is a result of the legislation.
Jacobson
I'm sorry, Pride 2000?
Linn
Yes, which was a result of the legislation that gave a limit of five years--
You were talking about the Pride 2000 grant that you got from--
We got it through the city, and the money came from the Department of Social Services and the Department of Labor to work with people who have been on public assistance who were disabled, but for various reasons they never got on SSI [Supplemental Security Income]. They want to get these people to have SSI. We also got in the program to tell people and to publicize the work incentives, the federal work incentives.
Jacobson
Like the self-support plan?
Linn
Yes. Did I ever tell you that you taught me something about a self support plan before my interview at CIDNY a long time ago. So when Pat Figueroa asked me about what it was, I knew a little bit about it. It may have helped my chances of getting the job. So I wanted to say thank you for this.
Jacobson
Well, I'm glad that it may have helped out. You're welcome. So did you work with other agencies in the Bronx? How interconnected are you?
Linn
We're not as interconnected as we should be. We have worked with the Bronx Housing Core Committee, and we have worked with the Bronx Asian community. And we have done some stuff with Bronx Community College and Hostos Community College.
Jacobson
And what community college?
Linn
Hostos. It's a Hispanic--H-o-s-t-o-s.
Jacobson
Okay. And what have you done with the community colleges?
Linn
We provide information sessions for their students. We had a whole program about their rights under the ADA. We had another program about the ADA where we had Howie the Harp talk. And as you know, he was one of the early people who survived psychiatric services.
Jacobson
Yes, he was out in Brooklyn for a time. So he ended up in New York. Is he still around?
Linn
No. Howie died.
Jacobson
When?
Linn
Howie died about five or six years ago.
Jacobson
From what?
Linn
I think it was a heart attack.
Jacobson
When you talk about doing that kind of work with the community colleges, are you talking about work with the students with disabilities?
Linn
Yes.
Jacobson
Okay. What about, I've been hearing about the NORC [Naturally Occurring Retirement Community] program.
Okay.
Jacobson
What is that?
Linn
I think it stands for Naturally Aging Community.
Jacobson
Naturally Occurring Retirement Community.
Linn
We worked with that when we had our Future Care Clearinghouse. I forgot our home program. We started a program for the elderly and individuals with developmental disabilities and people with severe psychiatric histories. I wish I knew what the proper terminology is, but I know that some people don't like "psychiatric" and I know that Howie the Harp used the word "crazy people" but that seems disrespectful.
Jacobson
Howie would say what?
Linn
Use the term "crazy people."
Jacobson
That may not be politically correct right nowadays.
Future Care Clearinghouse funded
LinnThat's what I'm thinking. So we did a lot of workshops for older people because there are some parents who are getting very old and had no plans or their adult children have no plans for what will happen. We got a grant from the Office of Mental Retardation and Developmental Disabilities and the Office of Mental Health, to run a clearinghouse.
Jacobson
Were they state or federal agencies?
Linn
State. State.
Jacobson
A clearinghouse?
Linn
Yes.
Jacobson
For--?
Linn
For information like lawyers, group homes. We had lists that people would call up and ask for attendants. Unfortunately, the funding didn't last. That turned out to be a very political grant and obviously we didn't play the politics right.
Jacobson
How much does politics play in the running of a center?
Linn
I think it's a lot of politics.
Jacobson
We're talking about local politics or city or state?
I think it's all those. If you have federal money...but I don't feel it so much on the federal level. The statewide and with the different agencies. Like when we got the clearinghouse, that was supposed to go to a mental health association. People were so mad at us because we view people with disabilities, as people first. That we didn't stand a chance.
Jacobson
And is that why you think you lost it?
Linn
Yes. Because I went to meetings and it was incredible, the people were coming in to talk, they didn't want to hear from me because they wanted to hear from my staff.
Jacobson
Am I getting they wouldn't let you talk?
Linn
They didn't want to take the patience to listen to somebody with a speech disability. Because they were working with different disability populations, I was like somebody from Mars.
Jacobson
And who were these people?
Linn
They were people that had ties to some state senator.
Jacobson
Were they from an agency--
Linn
They were like...One of the people was the president of the mental health associations. I wonder about the lady's mental health.
Jacobson
I don't blame you. But what did you do in those instances?
Linn
Well, my staff was like amazed because I tried to be pleasant. I let them do the talking. But I was trying to hold the place together. I didn't want to lose it because of my making a response about my own issues.
Jacobson
Did you want to add anything about that? You looked like you were about to say something.
Linn
I think I talked about people with cerebral palsy being viewed differently from the rest of the population. And it was just really freaky because these people were supposed to be people who worked with disability and should be more sensitive to it. They weren't. And it was crazy. The state gave a lot of money. And then they started giving grants to other organizations. But if you start making a big contribution and you don't support it, then it doesn't work.
Jacobson
If you start making a big contribution?
Linn
If you give a big grant one year, and you give nothing the third year, the program isn't going to go. If you do that continually to other programs, it doesn't make sense. And it isn't fiscally responsible.
Jacobson
I was thinking that you would have had the statistics to back you up.
Yes. But it just seemed like we really pissed somebody off.
Jacobson
Okay. I want you to talk about the home care program. Do you call it a home care program or attendant referral? Or what do you call it?
Linn
Well, CIDNY originally started as a home care referral program. And then the city changed concepts where nonprofit vendor organizations were hiring and training persons to be home attendants.
Jacobson
So did BILS have--?
Linn
No. No. We did, we don't--
Jacobson
So there's no attendant referral--
Linn
At BILS? No.
Jacobson
So that if a person needs help with activities of daily living, where would they go?
Linn
We would talk to them about what the choices were in the community. Like the Independence Care System. Like Concepts for Independence which is a program where the individual with the disability hires and trains their home care person. And the only thing that Concepts really does is the financial part of it.
Jacobson
So they wouldn't necessarily find an attendant, right?
Linn
Right. What we also do is, although we don't handle referrals, we do help consumers when problems arise with home care agencies.
Jacobson
So what type of help do you provide?
Linn
Okay. I can only think of this latest incident where a home care agency was telling the client that she couldn't have anybody sleep over her home because she had a twenty-four hour attendant. And it turns out that the person was having a sexual life, which is the right of anybody. But the home attendant didn't want to deal with it.
Jacobson
What happened?
Linn
Well, we're still dealing with it.
Jacobson
How?
Linn
Our peer counselor is working on it. For instance, this home care agency, even though they are inaccessible they wanted a meeting with the client at their offices. They were going to carry the client up steps and we said, "No way, no how." And they then agreed to meet at the consumer's home. We researched that there is no regulation about not being sexually active and not having people stay over at your house. But informally we were told that what really works is when you negotiate the issue. But I think agencies think that if they can get over by telling people that the regulations don't permit it, then they try to do that.
How did the incident come to your attention?
Linn
The peer counselor has started a peer group and a lot of people come. And I guess one of the consumers told her that she was having a problem.
Jacobson
And did you provide transportation?
Linn
We provided transportation to and from the center. We have a part time driver.
Jacobson
Bobbi, one of the questions I thought I'd ask you because we go way, way back.
Linn
Way, way, way, way.
Jacobson
I remember, when I lived in New York, the focus was on getting a person with a disability employed. Would you say that that was a correct perception?
Linn
I'm not sure. I think when you left New York, we were in our twenties and that might have been our priority. I'm not sure that it was everybody's priority.
Discussion of independent living concepts
JacobsonOkay. What I really want to get at is that concept of independent living. Was it in the people's consciousness early on? I know people were very issue-oriented in changing laws and fighting for accessible transportation and fighting for jobs. When did the independent living philosophy start to creep in?
Linn
For me, I guess, it was when I started working at CIDNY. Maybe I really had it before that. I can remember something happening in graduate school that Ann Marie always talked about. Ann Marie Tully. We were being shown a film about Abilities School on Long island. And the focus of the film was how great and how free the kids were at the school.
Jacobson
How old were these kids?
Linn
High school kids. And yet when the movie finished and the discussion started, this was a room full of graduate students who were to become rehab counselors, the discussion focused on how great the facilities were and how happy the kids were.
Jacobson
I take it, it was a residential--?
Linn
I think it's just a school on Long Island.
Jacobson
A segregated school?
Linn
Right. Henry Viscardi was the headmaster. And I remember being the one who sat up in class and said, "But wait a minute! Don't you see that this center is a segregated society and these kids aren't interacting with the able-bodied world? What's going to happen
Jacobson
Do you remember, remind me again what year that was?
Linn
This was about '95. No, wait a minute. I mean 1975.
Jacobson
Okay.
Linn
My friend, Ann Marie, said that suddenly she heard the voice of reason and she turned around in her seat to see who it was because she figured she had to get to know me because I was thinking. I was, like, on her wave of thought. So I had independent living concepts even before CIDNY.
Jacobson
How did you get them?
Linn
Because--
I was asking about how this idea popped into your head. You were saying because of Judy and because of the DIA, and you start saying something before we got cut off.
Linn
Again, from DIA, I started to think of myself as a person having rights. And yet I was encountering a lot of things that were wrong. Then, when I got the job at CIDNY and I learned the philosophy, it all fitted together.
Jacobson
How did you learn the philosophy?
Linn
Well, there was a reading by Gerben DeJong.
Jacobson
Gerben DeJong or Gunnar Dybwad?
Linn
Gerben DeJong. I not sure about the first name, but I'm pretty sure. It talked about the different medical--the different models of service. And it talked about--
Jacobson
Wait, it talked about what different models?
Linn
It talked about the different models.
Jacobson
Oh, he talked about it.
Linn
I remember that was the first thing that Ann Marie gave to me to read about independent living, the different models, the medical model and the independent living model. Then there were various trainings. Just being with Ann Marie and Pat who did have the benefit of Judy's training. I think it was Phil Draper who also came into New York State to train them.
Jacobson
That was before you got--
Yes.
Jacobson
I'm sorry, did we talk about before you got to CIDNY, about what you were doing?
Linn
I think we might have, but I'm not sure. I got a job working with the State Office of Mental Retardation and Developmental Disabilities. They had a program where they helped developmentally disabled people live on their own in private apartments.
Jacobson
Let's talk about your vision of the New York independent living movement. Where do you see it going?
Linn
That's a good question. But don't you remember, Denise, that whenever you ask me questions like, "Where are you going, what's your goal for this," I always sit there and scratch my head. I'm not sure.
Jacobson
You can take a moment if you want to think about it. We have plenty of time.
Linn
From what aspect? From the center's point of view, I think we're getting co-opted. I think that we're so into providing direct services that we're really not changing systems. And until we really change systems, nothing is really going to change.
Jacobson
This goes back, I guess, to disability rights. Is that what we're talking about?
Linn
Yes. And I guess that that's the clearer distinction. That's the distinction between an independent living program, which is a service program, and disability rights as the civil rights activists' map of what to get accomplished in the future.
Jacobson
Do you think that there's a way for the two to be interwoven?
Linn
The funny thing is that I think everybody sees them as interwoven. And I just had the realization that they're separate things.
Sits on state independent living council, 1993-2000
JacobsonI know you've been on the NCIL [National Council of Independent Living] Board.
Linn
No, the state's independent living council.
Jacobson
And what did they do? What is that like?
Linn
Well, like every nonprofit organization, we had our growth problems. Now just as I was leaving, we hired a good, qualified director who's really looking at the disability rights advocacy.
Jacobson
I'm really unfamiliar with the state's council on independent living. What does it do? Or what was it set up to do?
It was part of the 1993 Rehab amendment. Prior to that, every state had to have a state advisory council. But the new rehab amendment changed that and took the word "advisory" out of that. And it gave it equal power with the state designated unit VESID and CBV, the Commission for Blind and Visually Handicapped. We had to sign off on the state independent living plan. The council is to promote independent living in New York to support the centers in any way it can. And maybe it has some oversight responsibility with the federal funded centers.
Jacobson
So are there people on it from other IL [independent living] programs?
Linn
Well, the legislation said that it had to be a mix of consumers, people from IL centers, people from the community, providers. Actually 51 percent of the people had to be people with disabilities.
Jacobson
And where does it meet?
Linn
Because Albany is the capital of New York, it usually meets in Albany. And for the years that I was on the council, the people at the Albany train station really got to know me. And people from VESID said, "Maybe you should think about getting an apartment here."
Jacobson
You were going up often.
Linn
Right.
Jacobson
How often did you meet?
Linn
It met quarterly. But every month, it feels like, there was an executive committee meeting. And at the beginning, there were reasons for us to meet more often and stuff.
Jacobson
What reasons?
Linn
Well, first were holding director interviews. Then, after about four months, we had to let the first director go. Then we came up with director number two and we had some personal issues.
Jacobson
Who wanted the directors to leave?
Linn
Well, according to the legislation, VESID and CBVH had to give us some money to do that.
Jacobson
CBVH is?
Linn
The Commission for the Blind and Visually Handicapped. But we were lucky in that we were able to get it to become its own nonprofit. In other states, the government had tossed in making the nominations and there weren't a lot of activists on the council.
Jacobson
But in New York it's a nonprofit?
Linn
Right. Right.
Where does the money come from?
Linn
It still comes from the federal money that VESID gets.
Jacobson
But it's incorporated.
Linn
Right. And that was one of my real victories. Like they told me what they could do and I really opened my mouth and I really got a lot accomplished. I'm not saying I did it all, because I didn't. And there were a lot of others among us. Like Judy who would call up disabled people who realized that we really had a powerful thing if we could get together.
Jacobson
Who were these disabled people?
Linn
Well, the other director of the council was Doug Uziac, the director of the Buffalo Center.
Jacobson
Doug Uziac. I spoke with him at length.
Linn
There was somebody from the Suffolk Independent Living Center. And there was, what's his name? There was Mary Ann Williams, who really, she worked for Albany Medical Center, and I'm not sure that she ever really identified with the disabled before this. But she was really knowledgeable and really did a lot. And there was Ralph Shields, a disability rights advocate who does things in Albany who also really worked. And then there was Chris Rosa, who was a disabled student director at Queens College.
Jacobson
How long were you on the council?
Linn
I think it was eight years. It was a really good experience for me.
Jacobson
So you were on from 19 what?
Linn
I was on it before it became...'93, until the fall of 2000. So seven years.
Does independent living and disability rights movement meet needs of people with disabilities?
JacobsonThat was a long time. Is there anything more you want to say about the council? We're almost at the end of the interview. I wonder if you wanted to add any words.
Linn
Yes. I wanted to talk about the fact that I'm a person with a multiple handicap.
Jacobson
Okay.
Linn
But I'm not sure where to go with that.
Jacobson
Well, maybe just explain that.
Okay. Along with my physical disability, which is cerebral palsy, I have had psychological problems for most of my life. I described to you earlier about how I didn't want to go to this special school. And all my life it's been a struggle, where do I belong, and the feeling that I don't belong anywhere.
Jacobson
What makes you say that?
Linn
I don't feel like I belong anywhere. I feel like that I've always been an appendage to my mother and my mother's eighty-six years old. And even though I was the person who put together the Future Care Clearinghouse, I don't really have a very clear plan of what would happen to me when my mother dies.
Jacobson
So I guess what I want to ask to tie it to what we have been talking about, it sounds like in some ways that existing civil rights activism and the independent living system have not given you what you really need. So maybe we could talk about what is it you think you need in terms of independent living? What is it that--
Linn
You ask good questions, Denise.
Jacobson
I meant what is it that you--
Linn
It's funny, I cannot fully answer that because only answering the question on one level is integrated in the intellectual but the it's the emotional that I have problems with. I always knew all the answers, I just--
Jacobson
Well, why don't you start by explaining on the intellectual end?
Linn
Okay. I need to develop stronger bonds to my friends. I need to develop a life outside of BILS.
Jacobson
Okay. If you were a consumer and you came to your center or any of the independent living centers, how would a counselor help you?
Linn
The counselor would talk about options, so what are my options?
Jacobson
You don't need to answer them right now before you go on. But I'm thinking if you are aware of an area where you think there needs to be more work done.
Linn
An area of my life?
Jacobson
No, an area in terms of the issues around disability because part of what we're doing in this oral history is getting down the information so people can do research. In a lot of instances that I have seen, centers provide a service. But the question is, do they provide the emotional support?
Jacobson
Well, good centers provide emotional support. But that's still different from empowering people to become activists. And I'm not sure how people do that.
Jacobson
People become--?
I don't know how to have people become disability activists.
Jacobson
Is that a goal?
Linn
I think if we have enough people doing independent living, we won't have people doing civil rights activism.
Jacobson
But does every person with a disability need to become a civil rights activist?
Linn
Not everyone. But it hurts me when I see the younger students who just don't understand the struggles that were faced in the seventies and stuff. And who have no concept of what we worked for.
Jacobson
Are there still struggles, what are these struggles?
Linn
Well, on a personal level--
Jacobson
Let me turn the tape over.
You were about to--
Linn
On a personal level, people still don't see me as a person because of my cerebral palsy, some people. And I get really upset about things like that. But there's no way to legislate attitude. I tried to file an ADA complaint against Amtrak because one of the attendants was really lousy to me. It doesn't wash. It doesn't wash because the ADA doesn't have anything to do with people's personal attitudes toward each other.
Jacobson
Okay.
Linn
I also think that the stuff that ADAPT [American Disabled for Attendant Programs Today] is doing, trying to get people out of nursing homes, that there's still a lot to do.
Jacobson
Okay. Is there any recourse? Or any resolution?
Linn
I guess I'm beginning to believe that it's up to me to not let these things enrage me and stop me from doing things.
Jacobson
And so what you're basically saying is about empowering yourself to handle certain...?
Linn
Right.
Jacobson
Well, to go back to what we started talking about before is, if a client came into your center with your issues, how would the counselor deal with it?
Linn
On the intellectual, developing options, maybe doing some role playing on how to react to people's negativity. Try to help the person find support in other ways. Because the more supported you are in other parts of your life, the less things from the general public upset you.
I would think that building a support system is, for some people, a skill to learn.
Linn
Exactly.
Jacobson
Some people take to it automatically and some people need to learn.
Linn
I was looking at my parents' lives, and I'm not a joiner, but I don't think my parents were either.
Jacobson
Did they have people in their lives--
Linn
For my mother, it was her family.
Jacobson
And your father?
Linn
My father had friends that he had from when he was fifteen years old. So it was like the family and then the extended family.
Jacobson
Your friends were part of the extended family. That brings to mind something else that I also wonder about because I have cerebral palsy, too. Do you think, how is it different with our disability as opposed to somebody else or other people with other disabilities?
Linn
Our disability is very visible and isn't attractive. I always thought that it was because people were in wheelchairs and didn't walk, but the personal fact is that even having CP in a wheelchair is different. It's harder for the general public to acknowledge that we're thinking people. To understand rather than acknowledge.
Jacobson
Because of the appearance?
Linn
Because of the appearance and because of the stereotype idea. Like the more normal you act, the more normal you are.
Jacobson
Do you always find it difficult or hard, I mean, obviously you are an executive director of a center. You're really making your way. And you said that you feel you are fighting against the odds. What made you be so successful?
Linn
I didn't understand.
Jacobson
What made you be so successful?
Linn
I think that when I can put the emotions away, I really am a logical thinker. I really can get to the core of issues. When I do that, I feel like I'm alive. I was lucky because wherever I went, there were always people in support of me. Whether it was in high school or IRM [Institute of Rehabilitation Medicine, also known as the Rusk Institute] or NYU or CIDNY, I ended up succeeding, but it was like I always would try to get out of stuff. Like something would go wrong and I would say, "I quit." Which is something that I've done most of my life. And Ann Marie would go and get the resignation from Pat's box and say to me, "Linn, if you want to do this at this time tomorrow, I will let you put it back. But I ain't doing it today."
What happened during that time?
Linn
I would cool down. I'm not talking about one time. I'm talking about a habit of doing things like this.
Jacobson
What keeps you from you wanting to throw in the towel?
Linn
This is the scary thing. My mother always is trying to kick me in the ass. I always thought my brother would be there after my mother. I mean, my brother couldn't have given me everything my mother did, but I was sure that he could give me a good kick in the ass when I would need it.
Jacobson
I'm wondering, is that what many people, meaning the people with disabilities, are there people that need a good kick in the ass? I mean, once in a while?
Linn
I think I've said enough.
Jacobson
Okay. Well this brings the interview to a close. Thank you for agreeing to be interviewed. I think you gave me some valuable information.
Linn
You're welcome, Denise.
Disability Rights and Independent Living Movement Oral History ProjectHarilyn RoussoAdvocate for Disabled Girls and Young Women, Researcher on Gender Issues and DisabilityInterviews conducted by
|
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 Harilyn Rousso, dated July 10, 2001. 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:
Harilyn Rousso, Advocate for Disabled Girls and Young Women, Researcher on Gender Issues and Disability, an oral history conducted by Denise Sherer Jacobson in 2001, in New York Activists and Leaders in the Disability Rights and Independent Living Movement, Volume III, Regional Oral History Office, The Bancroft Library, University of California, Berkeley, 2004.
Tape Guide
- Interview 1: July 10, 2001
- Tape 1, Side A 205
- Tape 1, Side B 213
- Tape 2, Side A 220
- Tape 2, Side B 227
- Interview 2: July 14, 2001
- Tape 3, Side A 229
- Tape 3, Side B 236
- Tape 4, Side A 241
- Tape 4, Side B 248
Interview History--Harilyn Rousso
Harilyn Rousso was invited to participate in the Disability Rights and Independent Living Movement project because of her leadership role in identifying and addressing issues specific to girls and women with disabilities. Most notably, in 1983, Ms. Rousso developed the Networking Project for Disabled Women and Girls of the YWCA/NYC to promote the independence of disabled adolescent girls by fostering mentoring relationships with women with disabilities.
Ms. Rousso's two-session interview took place on the mornings of July 10 and 14, 2001. The interviewer had met Ms. Rousso through a mutual friend over twenty-five years before and had occasional contact with her at disability conferences and events.
Since Ms. Rousso lived in lower Manhattan in a "walk-up" (no elevator) apartment building and the interviewer used a motorized wheelchair, the first interview was scheduled to be held at the wheelchair accessible offices of Independence Care Systems, Inc. Unfortunately, the elevator at the interviewer's midtown Manhattan hotel was out of service. The venue for the interview was changed to the sitting area of the interviewer's hotel room. Ms. Rousso, who has cerebral palsy, climbed five flights of stairs for the first two-hour session. She returned the following Saturday to complete the interview at the hotel, but that time she was able to ride the elevator.
Highlights of the interview include Ms. Rousso's reflection on her self-identification with people with disabilities in her late twenties and early thirties, which, in 1979, became the impetus for her to create Disabilities Unlimited, Inc., and in 1982, to cofound the Association of Mental Health Practitioners with Disabilities. Ms. Rousso's work has led to her recognition as a National Women's History Project honoree for National Women's History Month in March, 2003.
The transcript was lightly edited by the interviewer and reviewed by Ms. Rousso, who added some brief comments to clarify and elaborate portions of the interview.
Interviewer/Editor
Oakland, California
I. Early Years, Education, Discrimination, Identification with Disability Movement, 1946-1979
Family background
Harilyn, let's begin with you telling me something of your family background and when you were born.
Rousso
I was born on May 21, 1946. I was born in Brooklyn, New York--in the hospital, I've been told. I'm the youngest of three children. I have an older brother, Eli, who is nine years older than I am, and an older sister, Sandy, who is five years older than I am. Now both married with three children apiece, who are all grown.
My father, David E. Rousso, was born at a place called Monastir, which was part of the Ottoman Empire when he was born. It now--well, for a long time it was--became part of Yugoslavia. I'm not quite sure what it is these days. He was a Sephardic Jew in origin, and Monastir was a small Sephardic community, where he grew up. Actually, he lived there until he was about seven. He came to this country when he was thirteen, in 1919.
My mother--Evelyn Rubenstein was her maiden name--Evelyn Rousso, she was a city girl. She was born in Manhattan, on the Lower East Side. Both my mother and father had many siblings. My father, I believe, had five. My mother had six siblings--big families. My mother was not Sephardic, she was an Ashkenazi Jew, and if you know anything about it, those two are considered very different cultures, and tend to be very suspicious of one another.
So my parents had a lot of barriers to overcome in getting together. Neither of their families, of course, trusted each other. But I think for my dad--my dad was very
Jacobson
When did your father come to New York?
Rousso
He came in 1919. He went through Ellis Island. He came through with his mother and most of his siblings. His oldest brother had come here first and had raised enough money to bring the family along. The family would have come earlier but World War I was going on and there was no way to get to this country. So they kind of wandered around for a while with different relatives, and stayed in different places until they could come. My father's father had died when my dad was young, I think seven or so. He had some kind of lung condition, I believe. So he passed away.
Jacobson
When did your parents meet?
Rousso
I think they met in the late twenties, 1928 or around there. They didn't--they got married twice, actually. They got married first in secret in 1933. Then they--my father tells the charming story of how they got married the first time. One day, it was my mother's birthday, and he went to her law office. She was working as a legal stenographer. He picked her up for lunch, and they had agreed to take the afternoon off, both of them. They were near Borough Hall, which was the Municipal Building for the borough of Brooklyn, and they just kind of decided, "Well, why don't we get married, then?" So they went to Borough Hall and they got married.
Then they went to some outdoor opera. They told this funny story of how they got into this opera, and saw this very big, heavy set woman who was supposed to be playing a romantic figure singing in it--it made them both laugh, and they were laughing hysterically and got thrown out of the opera. But, anyhow, that was kind of their unofficial marriage.
I mean, they didn't tell anyone for a year because they knew their parents wouldn't approve. So a year later, they got married officially with a rabbi and all that. They lived together from then on.
Jacobson
When they were first married, they weren't living together?
Rousso
No, nobody knew. The only person who knew was my mother's sister, Sarah. They just kind of figured that their parents would freak out and so on. They never even spent the night together, but of course, those were the days when you didn't do such things. My parents--my mother was living with her family, and my father was living with his, and there would have been no way.
Jacobson
What did your father do for a living?
Rousso
He basically--his story, and the story of his family, is really one of these Horatio Alger stories, you know, coming here poor. He recently passed away, actually. He died not even six months ago, just this past February. He'd tell us stories of how he and his siblings shined shoes, and how they would wake up at three o'clock in the morning to
Eventually he got into the garment industry. At first he was a sewer. He would sew garments together, and he learned to be a pattern maker. His brothers were also in the garment business. It's kind of like the Sephardic community was into it so he was part of the pack. They all proceeded to own their own businesses and do very well. He was very successful. He had a business called Rousso Sportswear, where he owned--it was women's clothing. He was quite successful.
I think for him it was a wonderful thrill to go from such dire poverty--he had such a difficult time when he first came here, lots of siblings, a mother and no father, and really struggling--and to become such a great success. I think his greatest thrill was to buy his first house in Queens, and have a sense of ownership. Really a charming and very touching story. For him, the idea that you could pull yourself up by your bootstraps was really his experience. I think he had that image, that you could do anything in this country.
Family lore about birth and delayed development
JacobsonLet's go back to when you were born.
Rousso
Okay. I was born in 1946. I was the third child. My sister and brother were already born. I think my parents were expecting a boy--the first one was a boy, the second a girl. I suppose there was an expectation of another boy because they had in mind to call me Harry, after my mother's father who had passed away a couple of years before I was born. So, when I didn't turn out to be a boy, my mother was very creative. She kind of cooked up this name, Harilyn.
Jacobson
So that's the origin of your name?
Rousso
Yes. That's the origin of the name.
Jacobson
I always wondered.
Rousso
It was a creative act.
Jacobson
So you were born in a hospital?
Rousso
Right. In the family lore about my birth--it's always good to talk about family lore--was that I was in a hurry. I was in a hurry to be born when I was--my mother had a sense I was coming quickly and she rushed to the hospital. She says that they couldn't find the doctor. You know, my fantasy was that he was playing golf, or he was somewhere. So they couldn't reach him. She says that she wanted to give birth, and I was on the verge of coming out, but the nurses were not going to let her give birth until this doctor showed up. So she describes how the nurse told her to close her legs to keep
Although she was quite concerned, at the moment that I was born, it appeared that I was perfectly okay--whatever that means. So things proceeded. But she kind of noticed fairly soon that I seemed to be slower in developing. I was having a little more trouble sitting than she might have expected. I was having a little more trouble with balance. Although I was apparently quite an active and curious kid, I was not grasping and getting around the way her previous two children had done. I suppose it helped her that she had some comparisons to make. So she kind of dragged me around to doctors to try to get some sense of what was wrong, if anything was wrong. Her family doctor, her pediatrician though she was a hypochondriac because he couldn't find anything. She tells these stories of going to a doctor who said I had a hole in my head and I should be institutionalized--she tells that story and she--
Jacobson
How old were you?
Rousso
I think she said it was around nine months when that particular incident happened. But she kind of knew that that was not right. She didn't pay attention to him, thank goodness. My mother was always a very feisty, energetic woman who didn't take too much crap from anyone. So she was very skeptical of what anyone would say about anything, lucky for me.
A "mild case" of cerebral palsy
JacobsonSo when did they finally--
Rousso
When did they finally get the diagnosis? I was about three, I think. I think what really was disturbing to her was that I was not walking. I was three years old and I was not walking. That, to her, seemed like a real sign of something wrong. So she finally took me to some place where they knew about cerebral palsy. They told her that I had a quote "mild case" of cerebral palsy.
Jacobson
And you don't know where--?
Rousso
It was somewhere in Brooklyn. It was somewhere in some specialty hospital in Brooklyn. She said that her pediatrician was in this panel of doctors who were finally assessing me at age three. His colleagues identified me as having cerebral palsy. She said he was very shocked because he didn't, until that moment, really realize that there was anything wrong. So he was quite apologetic to her at having missed this. Who knows? Who knows if whether it was better or worse? In terms of those days--so little was known about CP in those days.
Impact of disability on family
JacobsonSo what affect did the diagnosis have on your family?
Rousso
It's hard to say. I don't think they did much that was all that different. It was not--when I was given the diagnosis, it was not that they [the doctors] recommended a whole bunch of stuff. I don't think that they recommended--maybe they recommended some physical therapy. But even that, I'm not so sure of. They seemed to emphasize to her that it was relatively mild, that they perceived me as a smart kid. My mother tells me that they said, quote, "Raise her like a normal child"--that is what they recommended.
Jacobson
And what about your speech?
Rousso
My speech--I think it was probably, it was always problematic but, perhaps, I think it has gotten worse with age, is the truth of it. Although now it's actually better because I've been doing some procedure that I'll tell you about at some point. [The procedure is botox injections that relax my vocal cords and enable me to speak more clearly.] But, in recent years my speech has gotten quite incomprehensible. At that time, I think it was clearer--definitely not clear, but it was clear enough that people understood me. Speech was never the thing my mother was most concerned about.
Walking was very important to her [my mother], and walking straight. I, during my whole childhood, had this battle of walking straight. She wanted desperately for me to practice walking straight so that I would, quote, "look normal." And I resisted her continuously like the plague. We had these endless battles. She would drag me to physical therapy. I would be a good girl in physical therapy. The physical therapist would give me all these exercises to do afterward, and then I would do nothing. I would never behave myself. She used to pull her hair out.
Jacobson
Did you have any idea what made you so resistant?
Rousso
Yes, because I thought I was okay. I felt perfectly normal for who I was, and it was not a big inconvenience--I wasn't suffering. I mean, my mother had always encouraged me to do whatever I could, and do everything. So, although I didn't do everything wonderfully, I did everything I wanted to do. It's not like I had this absolute desire to do something I couldn't--there was no motivation. I didn't want to be normal because I felt normal enough, you know? It kind of pissed me off that she didn't just accept me for who I was, you know, like, "Here I am, take it or leave it!" It just didn't speak to me.
Jacobson
What about your sister and brother?
Rousso
In terms of their reactions?
Jacobson
Yes.
Rousso
I really don't know. I can't say. They were always kind of supportive of me. I'm sure it detracted from the attention that they got--particularly my sister. My brother was sufficiently older. He had a more independent life.
How did it detract from your sister?
Rousso
For her--just probably from the attention. I'm sure my mother spent a lot of time dragging me from hospital to doctor to--and I'm sure she didn't get as much attention as I did. I can't really say--you know, you would have to interview her because, in a way, I think she doesn't always tell me honestly what it was like for her. The thing that I remember most was that I was very smart in school, I was a very good student, and she was not a very good student. My mother would often make these comparisons for her, telling her, you know, "Look what your sister can do." I'm sure she hated it! You know, I think--
Jacobson
Your sister?
Rousso
My sister. Yes, she must have hated it. It would have killed me if I was her. I think in hindsight she might have had a learning disability, because she had--reading did not come easy to her. She was not such a good reader. She was not such--didn't have an easy time writing. But, this was the days before learning disabilities were diagnosed. So she kind of suffered. She had built this perception of herself as stupid, that she wasn't smart.
In contrast, however, she was very handy. She could do everything with her hands. She was very good in art. I, of course, was jealous of her capacity to do all that stuff. It's kind of a trade-off. I don't really think of it so much in disability terms because it was not--that was not central stage.
Jacobson
Where was your father during all this?
Rousso
That, too, I can't tell you. I have two minds about that. In hindsight, I think he was probably very distressed by it. I think he is a very proper man. He liked everything proper, and normal, and traditional, and right. I'm sure to have a daughter who couldn't walk right--and his family, his mother was, I think, quite critical, you know, demanding to know, "What's wrong with her? Go find out what's wrong with her," I think. But I don't remember this first-hand. I don't have that experience with him because, to me, he was a supportive man, a supportive father. I was very identified with him because I looked a lot like him. I looked more like him than my mother. I kind of idealized him through much of my life.
So I didn't have that sense of his turmoil. He was also a very quiet man so he didn't talk about his feelings. So it's hard to know--my guess is that he kind of got my mother a little crazy with his concern about what was wrong with me, but that it didn't come out directly to me. It's also true, I have to say, though, we [my family] never directly talked about my disability when I was growing up. It's not like this was a common discussion. I mean, we kind of knew I had it, but we didn't call it cerebral--I mean, I knew it was cerebral palsy but we didn't use that term. We didn't say it, or talk about me as the disabled child. The language was not part of the family conversations. So a lot of the discussion was underground.
Attends regular school, avoids children with disabilities
JacobsonWhat about school?
Rousso
School. Well, I--again, I'm speaking a little in ignorance here because I think my mother kind of paved the way for that. I don't know quite how she did it, but she simply insisted that I go to the local school and I did. It was never, I don't remember, a struggle. But my guess is she must have had some kind of struggle with the school.
Jacobson
You went to a regular--?
Rousso
Right. For my entire school career. From kindergarten, I remember I went to the local public school down the street. I had this image of myself, the first day of school--
Jacobson
Did the other kids accept you?
Rousso
Well, I was lucky that I always had friends. I mean, there were kids--occasionally I would have these rare incidents of kids staring or imitating. But that was not the predominant experience. My more predominant experience was that I always had a couple of good friends in school and in the neighborhood. So I was not all that isolated except, again, that there was kind of this agreement that we never talked about my disability. It was just not a spoken topic. It didn't come up. But I was lucky in that respect. I had some sense of community.
Jacobson
Did you ever have contact with other disabled kids?
Rousso
No, very little. I avoided it. I mean, it's very ridiculous, because half the time my mother was--as soon as I started school--this is something I'm writing about now because it is so interesting to me--my mother got involved in an organization called The Cunningham Women's League for Handicapped Children. The work of this organization was to raise money for children with cerebral palsy. They got involved with the forming of the CP Center in Queens, when it was just getting founded. She worked there. She was--it was a very important experience for her.
Jacobson
What year was it?
Rousso
Well, I'm actually--I'm having so much fun interviewing all her friends because I want to get the history. But I think she joined around 1952. The organization itself had started a couple of years before and it's a very wonderful piece--an interesting piece of history about what happened to middle-class women at that time who have children. There is a social requirement that they no longer work and so they're at home, and they need to do something for their community. That was kind of how this group evolved.
My mother was ripe for it because as soon as I went to school she had time on her hands. She was quite a smart woman so it became a way for her to get involved in good work, or what she considered good work, for the community. But the most interesting thing is that part of what she did, and many of them, there was a--this was before these kids would be entitled by law to go to school--these were kids who had more significant disabilities than I did, and they were not allowed to go to school. And so the
CP Center had a school program. The UCP [United Cerebral Palsy] of Queens formed the school. The women in this organization [the Cunningham Women's League] would drive these kids from the neighborhoods all over Queens to the center. So my mother was like a volunteer driver for many years. I mean, she had a lot of contact with disabled children all the time.
But I had a very bad reaction to kids with disabilities. I was very, I think, invested in the, quote, "normal life." You know, I was mainstreamed and my friends were nondisabled. I was getting along and I didn't want to have that [disability] identity in particular, because it was such a stigmatized identity at that time. You know, my mother would come home after driving these kids and she would be crying because for her it was very traumatic. Then she would yell at me for not practicing walking so I could look normal, because compared to them--[laughter]--you know, it was one of those weird scenes.
Jacobson
How about kids with other disabilities?
Rousso
They were pretty invisible. There was one kid who had a mental retardation who lived in my neighborhood. She was pretty much--she didn't go to school. She was in the house. In my public school, maybe they were there, but I tell you, I have no memory of any of the children with disabilities in that school. Maybe there weren't any. I mean, I don't know. But I sure didn't see any.
Jacobson
You said you went on and graduated to junior high, and then high--?
Rousso
Junior high was maybe a little trickier because I think there was--I faced a few more barriers here and there from the kids. I remember there was a kid in my class who used to imitate me. Every day he would imitate how I walked or imitate my facial gestures. So there was some harassment. Particularly at first, the school was very protective of me. Like I remember--protective, or--protective is not the right word, stupid [chuckles] is a more--probably closer.
I remember when we had fire drills, the assistant principal would come for me, take me out of my class, and not let me go down with the rest of the class because, I don't know, she thought I couldn't walk fast enough or I'd burn up the other children, who knows? But I was more stigmatized, at least initially until they finally got used to me. There was a little more stigma there. But, nonetheless, I kind of got through it. I still had my friends. Although, it's also true there were--kids were getting a little more into dating. I mean, the dating scene kind of starts at the end of junior high, and I didn't have any of those experiences. I had the fantasies, God knows, but I didn't really have any experiences or any expectation of experiences. You know, I didn't envision that for myself.
Jacobson
Let me turn the tape over.
Rousso
Okay.
No expectations of dating, minimal sex education
What made you aware of the idea that there weren't those kinds of expectations for you around dating?
Rousso
I can't say, except that I just knew it. I just got the message. I can't even tell you how I got it. I mean, I had these conversations with my mother [later on, when I was an adult], who insisted she always expected me to get married. Although, with qualification--she expected me to marry--her fantasy for me was interesting. She said she expected me to marry a man who worked with disabled children and so he would be more accepting. That was her fantasy. But I didn't know about it--she should have whispered it in my ear [laughter], because I didn't get it--I mean, I--it was partly because we never discussed dating, but then again, she never discussed it with my sister either.
My father--I think I might have gotten it more from my father than anyone, not that he said anything. But, in much later conversations, my father, when I was in my twenties, he really communicated to me the sense that he didn't expect that any man would ever want a disabled woman in general, and me in particular. He didn't say that unkindly, I think. That's essentially what he believed, Dad. He was, as I said, quite proper. He had a sense of how things go in the world and some of his images were very traditional. His image of a woman had to do with the traditional, I guess, images of beauty and perfection, and being able to do everything. He just didn't think I could do it. And I got it. I got the message.
Jacobson
Did you have any kind of sex education?
Rousso
Sex education--well, of course at hygiene [class] in junior high school, I suppose I learned about Tampax--no, not Tampax. My experience predated Tampax, you know--sanitary pads, and menstruation, and that stuff. I don't think it went too much beyond that.
I have this very funny memory--I mean, I have an older sister, so certainly that's where some of my sex education--I have this funny memory. I guess I used the word 'fuck' at some point. I was a young teenager and my sister said to me, "Do you know what that word means?" And I said, "No." [laughter] She said, "Well, it has to do with how babies--" I knew nothing when we had this discussion. And so she told me, "Well, a man takes his penis and puts it in a woman's vagina." And I was totally freaked! [laughter] I thought, "Yuck! That's disgusting!" I couldn't quite express, you know--it seemed like such a disgusting notion. I mean, I was not a young--I'm sure I was in my early teens when--ten, eleven, twelve, somewhere around there. I was freaked.
So I think what little I knew, I must have learned from her. You know, I mean, I remember when I got my period, she kind of told me what I was to do. I don't remember explicit conversations, you know. In school definitely not. I just don't think it happened [sex education]. I mean, I was mainstreamed, and I don't think it happened. I mean, we must have learned how babies--you know, that stuff. But I just don't recall much, and certainly was not the emotional side of it.
Did the subject ever come up in your peer group, among your friends?
Rousso
It must have come up, but--I don't--certainly the subject of boys came up and dating, and which boys are cute, and stuff like that. I can't really remember explicit conversations about what sex means and how it feels. I don't know, maybe it passed me by--we also knew, in junior high school, or high school, in particular, there were girls who were very sexual who seemed like quote, "sluts." And we would kind of laugh at them more--
Jacobson
Bad girls!
Rousso
Bad girls--and make derogatory comments because they were easy with boys and stuff. But I'm not even sure I knew exactly what that meant, you know, or how I felt about it. It just--it seemed like such a--in some ways a very foreign idea to me.
Jacobson
What year was high school?
Rousso
I guess it was 1961 to '64. Certainly kids, friends, dated and stuff. I mean, even my best friend told me much later that she dated when we were in high school. But, you know, it's weird; she never mentioned that part of her life with me. That's why I--I must have either--either I was communicating to the world or the world was communicating to me, or both, that sexuality and boys and dating were not part of my world, and I didn't want to hear about it, and I couldn't have it, or something. I mean, that was shocking to me when she told me that she dated--she was my best friend, how can she not have told me that? It seemed very strange, you know.
Channels energy into academic arena; attends Brandeis, 1964
JacobsonSo you finished high school, and you were a good student--
Rousso
I was a very good student. A lot of my--I think a lot of my sense of myself was very much wrapped up in my school achievements, you know. And I kind of, maybe, channeled some of that social and sexual energy into the academic arena because that was where I really felt the best about myself, and felt very successful. And I did very well in college.
Jacobson
Where did you apply to college?
Rousso
I applied to Smith and Wellesley, and Brandeis, and Queens College. And there was a big part of me that wanted to go to Queens College because I had never been away from home and the few times I had ever tried to go away from home, like to go to camp or to go visit friends or relatives for a weekend, I was deathly homesick, deathly homesick. So I couldn't--part of me couldn't imagine going away to college, because I just didn't think I was going to survive without my mother. I mean, not that she literally did stuff for me physically, but emotionally, she was a very strong influence. She was like a presence, a defender, a protector--so it was--I couldn't imagine just leaving. She said
So, that's where I applied.
Jacobson
It sounded like she had a lot of confidence in you--
Rousso
I guess she had more than I had in myself, sure.
Jacobson
Yes, and she expected you to go out into the world--
Rousso
She did. I think we had an interdependence, in a way. I think there was a way in which she depended on me, and that she fostered some of my dependence on her, and then, wisely, she knew that that was not smart. I wish we had had more preparation for the separation because it was hard, very hard for me to just go away that abruptly. But it is probably always hard.
Jacobson
Tell me about Brandeis.
Rousso
Well, I picked it fairly irrationally, like I suppose most people pick colleges, for who knows what reason. My brother had gone to MIT more than maybe a decade before. I remember when he was there we visited him and Brandeis had just opened its doors a short time ago. And we went to visit, and my parents were very impressed that this Jewish institution, or Jewish-based--and I think that image stayed in my mind somehow, that there was something positive about it, so--
I mean, it was a very good school, there's no question about it. I had a very hard first year, mainly because of the separation. I was kind of like ripped out of the roots--you know, I was so dead. It was just like death, temporary death, not to have the support there. I spent a lot of time crying for a couple of months. Then I just got over it or I decided that it was enough. I actually think I kind of put a real blanket on my emotions. I felt like I had to stop crying and I had to stop feeling because I just needed to get through it.
My father was very strategic. At some points I used to make these hysterical phone calls. You know, I would call, "Oh, I'm going to die, I have to come home!" And at one point I said to my father, "I need to come home, I can't stand it!" He said, "All right, so come home and I'll get you a job." And the thought sounded so kind of dreary that I decided, "Well, I guess I'll stay--" [laughter] I don't think he was using psychology but it worked very well.
Jacobson
What about your relationships with--how did your professors react to you?
Rousso
It didn't seem to be a major barrier at any real point. I never asked for any--you know, I was into kind of not acknowledging that I had any needs. And so I was not asking for anything special ever.
Jacobson
Did you have some difficulty taking tests?
I might have, but I never owned up to it. I didn't ask for more time, ever. In fact, it was not until graduate school that--I didn't want to even propose that I would take extra--maybe I would like more time. I mean, I just--it would not have occurred to me to do that. I would have been too mortified to even ask. My faculty advisor never--we never even discussed it. Can you imagine? Well, it was 1964. People didn't discuss those things.
Jacobson
What was your major?
Rousso
Well, for two minutes I was a math major, and after that I went to economics, and that was my major. And for me, it was actually a very good major. I was, and I actually continue to be, fairly analytical. I like things that involve analysis, and I did like math. I maybe could have survived in math with a little encouragement. But math, in a way, was a bit too theoretical and not very personal. Economics was a little more grounded in the real world, a little.
Jacobson
Were there any people with disabilities on campus?
Rousso
Sure. Irv [Irving] Zola. We were both in the closet together, Irv Zola and I.
Jacobson
[chuckles] Tell me, who was Irv Zola?
Rousso
Oh, he later became a big disability rights activist. But when I knew him--I don't remember, I think he was a sociologist, or--wasn't he? I mean, he was just a member of the sociology faculty. And we would kind of occasionally look at each other, kind of with a glimmer of some recognition, but--I never had him for a teacher, in fairness, and maybe if I had, it would have been different. We were more like ships passing in the night, and occasionally we would do things in the same--
Jacobson
He was disabled?
Rousso
Oh, yes. He had polio as a kid. He had these big, heavy braces. He tells this very sad and funny story about how he drove to work and they gave him a parking space a zillion miles away from where his office was. And he couldn't bring himself to tell them, "Would you please give me a parking spot behind my building." So--because he was, until--he was like me! [chuckles] "We're not disabled!" So he parked his car all the way down the other end of the campus, across the road. He went there everyday, I'm sure [he saw it] as a sign of his achievement that he could survive. Brandeis was a very hilly campus and probably still is. It's full of hills, beautiful hills and trees, but not easy to walk around. But, we were both into it. And we met later and had these conversations. There probably were other students, but I, again, have no recollection. I certainly had no community with them.
Jacobson
And so, did you notice any ramps or accommodations?
Rousso
Nothing. There was--I think at that time there was probably nothing. Maybe--I don't know. There might have been. There was a--in its favor, there were many buildings that were relatively new. So my guess is many of them had elevators to get up. But there were also some very old buildings from previous incarnations of the school--like the administration was a big old building called Ford Hall. I guess it might have had
Jacobson
When you graduated from Brandeis, did you go right to grad school?
Rousso
Yes, I did. It was one of my many mistakes in life. I was still in economics, and I went on for a year.
Jacobson
Were you, in any way, funded by the Department of Rehabilitation?
Rousso
By my father. I was funded by my father. Of course, in those days, college was $3,000 as opposed to $37,000. I'm sure it was a lot of money at that time, but it was not outrageous, as it is now. No, I never would have asked any of those--and, in fairness, I think my father probably was earning too much for me to qualify anyhow. But it wouldn't have occurred to me.
Becomes involved in the women's movement
JacobsonLet's move on. You talk about wanting to appear normal, not like anybody who had disabilities? When did that change?
Rousso
It might have changed a little bit in the seventies. I had left graduate school and I decided--I went to economics for one year at Harvard University. Then I decided I couldn't cope so I left and I moved to Washington and I got involved in the women's movement. It was kind of the years of consciousness raising groups. You know, I got into a CR group and it was kind of the beginning of budding feminism, I guess, or well--it was the beginning of my feeling like I had a female identity. I had that experience with being in these groups. And suddenly I began to see a lot of similarities with nondisabled women and somehow feeling some connection.
It was through that that I actually decided to go become a therapist, because I had always wanted to do that, and decided I probably couldn't do it because of my disability--you know, I didn't acknowledge my disability, but it was in my head, it's not like I didn't know I had it.
Jacobson
When you moved to Washington, did you get a job?
Rousso
I moved there because I had a job. I moved there just for the summer, I thought, because I had a job working in, well--maybe I didn't exactly have--one of my professors at Brandeis had moved to Washington to do something and I told him I was looking for a job. He kind of invited me to come down. I wandered around and I eventually I found a job for the summer in the OEO, the Office of Economic Opportunity. So I came for the summer and I thought I would go back to graduate school in economics in the fall. But come the fall, I knew I really didn't want to go back there and I was kind of liking my job. I kind of got into the women's movement. It was kind of--
When you decided not to go back, was it because of your lack of interest in economics or--?
Rousso
I think it was probably multi-determined. It was partly because economics in graduate school is very theoretical and mathematical and not very humanistic, at least at Harvard, where I was. So, it was hard for me to kind of relate on an emotional level to the content. Plus there were almost no women students. There were forty graduate students, and maybe four women. It was a very male--at that time, it was a very male dominated field. It was not an easy--and a very competitive, aggressive environment. It was not an easy environment to be--on top of that I think I had schooled myself out. I had been a compulsive student since high school, compulsive big time, and had achieved a lot, but I was really burned out on studying. I needed something different. I couldn't sustain that intensity. I didn't have it in me. So it was kind of multi-determined.
I liked being in Washington because I was beginning to have a life. School had been my life and I had no other, really. I was kind of beginning to have something. So anyhow, I wound up going to social work school as a direct result of this women's CR group and stuff, and I ultimately went to New York University. I came back to New York to do that.
Jacobson
Did you live at home?
Rousso
No. I never lived at home after I--well, once I went to college I lived at home during the summers but after I left, graduated college, I never went back home. So I had an apartment. When I was in Washington I had an apartment. Then I got another degree in Adult Education at BU [Boston University], kind of in transition to social work. I went to BU and I had an apartment. Then I came back to New York and it was never really a question of I should live at home. I mean, it didn't occur to me or to my mother, for that matter, for me to do that.
Jacobson
Then you were all grown up.
Rousso
Right. I was all grown up. I don't think I'm all grown up now, Denise, so let's not exaggerate. I don't know. [laughter]
Jacobson
Okay, tell me--
Rousso
Oh, you asked a question about something--
From total denial to total immersion--before the disability rights laws, 1976
JacobsonHow did you go from--?
Rousso
--total denial to total immersion?
Jacobson
Yes.
It's an interesting process. I think I was kind of on the verge, but something jump-started me. When I was in social work school, I started to meet some--there was another disabled woman who was a student and we kind of became friends. I was kind of--you know, I don't remember her name. She didn't finish. She went out to Kentucky. She couldn't manage it; it was too much for her physically. But she was my first real disabled person friend. It was very important because we liked each other.
Then somewhere along the line I met Bobbi Linn. That was really--she was really important to me because she not only had a speech disability--she had CP, and it was like it was--you know, it was wonderful, again, to have a friend who had a disability, who had a disability I had learned to hate--and to be able to connect.
But it was also, at that point, I was kind of thinking that I'd become a therapist, and wouldn't it be good to specialize and deal with disabled people since I am one? I kind of had this fantasy I was going to carve a niche out for myself. It started as a very pragmatic thing. "I'm going to make my money!"--[laughter]--because I had no idea how poor we all are! But that's another story.
But anyhow, what really kind of finished me off or started me off on it, depending on how you look at it, was that I wanted, after I graduated social work school, I wanted to go to an advanced institute in psychotherapy. I started one and after a year, they kicked me out. They kicked me out--their reason was my disability. They decided that a person with my disability should not, could not, become a therapist--
Jacobson
Where was this?
Rousso
It was a place called the Washington Square Institute for Mental Health. I kind of picked it out of convenience. I decided at the last--probably I would have gotten kicked out of others, because that was kind of the attitude at the time.
Jacobson
What year?
Rousso
I think it was 1976, or somewhere around there. It was before they--you know, before most of the laws there are now. It was even before the New York State Human Rights Laws. So, there was really nothing to protect me--
Jacobson
Do you remember what year the New York State rights laws were--?
Rousso
No, but I just thought of who else you should interview--Adrienne Asch, yes--because she was one of the founders of that law. She worked on that law.
Jacobson
She's on the list (of potential interviewees).
Rousso
Okay. She's at Wellesley. That's why I thought of her. Anyhow, I don't know, but I think it [when the law was passed] was after that. I think it was around maybe a year or two after, in the late seventies maybe. I don't think that that law was in place. I could be wrong, but I don't think it was in place at that time. So, in fairness to the institute, I think what precipitated their--do you need to stop it?
Jacobson
I think I'll change the tape.
Okay.
So you were telling me about your internship--
Rousso
Right. I was telling you about the psychotherapy institute. I think in fairness, I have to say part of the reason--the precipitating factor that got me thrown out was that I--part of the training is that you get patients. They had assigned me a number of patients and one by one they all left therapy with me, which was true. I mean, they did leave. But what happened was that they [the institute] interpreted--their interpretation of why they left was that my disability was too traumatic for the patients. They went from that to conclude that I could never be a therapist. They didn't--
Jacobson
What was your view?
Rousso
I don't know why they--I mean, I'm sure they [my patients] left for a lot of different reasons. Maybe my--I was nervous, my personality--I mean, you know what I mean? I'm sure there were many reasons. I just--to me it sounded a little off to make that conclusion but partly, I have to say that from the moment I came there, they expressed a lot of anxiety about my disability.
When it first came up in our conversations before this happened, I kind of poo-pooed it because, in my mind, it really felt to me like disability could be like any difference between the therapist and the patient, and something you work on. So it kind of surprised me that they were so--seeing that as a negative necessarily. I really thought it could have had more to do with something I was doing, my inexperience, or my personal anxiety, rather than the disability, per se. The disability per se didn't--it didn't seem to make sense to me, and it seemed like a wrong and prejudiced conclusion to make.
And it was also, of course, a very shocking experience. I mean, here I am, I'm this hot-shot student. My whole identity has been focused on achievement, and now I'm getting thrown out of the school. I mean, that was quite a trip for me. But I was lucky that I knew that it was wrong, or at least I thought I knew it was wrong, their analysis was wrong.
Jacobson
You said personal anxiety. Could you talk about that a little bit?
Rousso
Well, I'm not even sure of what I'm meaning. I can't even say. I'm just assuming that I must have been uncertain, or maybe I was concerned on some level that my disability was an issue so I was overcompensating. I don't think there was one reason for every patient. I think people leave--come and go for a lot of reasons. Some, maybe one--some were disability-related, but to make a conclusion like that seems totally nuts to me.
Tracks down therapists with disabilities
JacobsonWhat happened after you got kicked out?
Rousso
Well, part of what I did is I started to dig up other therapists with disabilities. I kind of wanted to see whether it [i.e. whether what I believed, that this was a case of discrimination] was true. I guess I was testing my theory or trying to see whether there were therapists out there with disabilities who survived, or something like that. So I kind of rounded up this group of therapists who had disabilities. You have to, again, understand who is this person who is doing this, someone who's not had any experience, contact with disabled people, no experience organizing. Be that as it may, it was actually very empowering. It was great. I just wound up tracking them down, person by person. Each person would tell me someone else--and [I wound up] meeting some wonderful people who I really liked.
Jacobson
How did you start to track them--where did you find them?
Rousso
I think I--I found them in various and sundry places. I think Adrienne [Asch], actually I found through this process, that's how I got to know her. I have--I was working at the time in a therapeutic nursery, and one of my colleagues was going for some advanced training himself. He was going to school with Adrienne so he said, "Why don't you go talk to Adrienne?"
Jacobson
Where was he going to school?
Rousso
Oh, I was in one of these psychoanalytic institutes called ICP, the Institute for Contemporary Psychotherapy. It was in New York City. And she was living in New York at that time. She's from there [actually, I think] she's from New Jersey, but she lived in New York a lot of the time.
Jacobson
And this was '77--?
Rousso
This was probably '76, '77. It was the late seventies. And it was a whole process. I think, in truth, before they literally kicked me out, they kind of told me they were going to kick me out, things seemed kind of uncertain for a while. So I started networking like mad to see who I could track down, to see what their experiences had been.
I didn't know how I found them all but I found quite--and I was not just limiting it to therapists. It was also rehab counselors and anyone who was kind of in the mental health field. So it was really kind of a--you know, it was really thrilling, I was really into it and it was a good way to channel [my anxiety and anger]--I didn't stay very anxious too long from this experience [with the institute]. I fairly quickly got into this organizing stuff and it kind of took over my life, actually. [laughs]
Jacobson
And during that time you had a job, right?
Rousso
I had a job. I was doing this training part time, which is usually how people do it--this psychoanalytic--I was, because I wanted to start a practice, that was the plan, so I had a full-time job. I was just kind of doing this on the side.
Where were you working?
Rousso
I was working at a place called Spence Chapin--it started out as an adoption agency and then it went into foster care, and a whole bunch of other things. They had a new program called the Children's House, which was a therapeutic nursery for children who had emotional and developmental disabilities. They [The Children's House] also had a--what they called the Mother-Infant Program for mothers who were at risk for parenting issues. It was a program to teach parenting to young mothers.
Jacobson
How did you get that job?
Rousso
Boy, I was lucky! I got it through the New York Times. I have to tell you. Before that, I had worked at an outpatient children's department at a mental health clinic. Before I graduated social work school, I was very industrious and I worked really hard to get a job, and I had a job by the time I graduated from social work school. It [my first job] was at this mental health clinic and I worked there two years, and then I saw this ad in the paper. That was how I got the first one, too. I applied, and it was a new program, and for whatever reason the woman hired me. So that was what I was doing. That was an interesting job, and I stayed there, you know, six or seven years. Anyhow, it was certainly good to have a job when all this craziness was going on.
Jacobson
So you got this group of therapists with disabilities together.
Rousso
Right. So I got this group of therapists with disabilities together. Of course, we all started to share war stories, and it became very clear that I was not the first person who had had this kind of experience. A lot of these people had been thrown out of all kinds of places, at various and sundry parts of their career, and that they had had a lot of barriers.
So I kind of formed this organization, the Association of Mental Health Practitioners with Disabilities, and we would meet. Our real focus, fairly quickly, became organizing some kind of conference, public arena, to talk about the barriers and so forth. So that was a focus--kind of as a result or in connection with this I decided to do a lawsuit against this institute. That took forever, and I didn't even win it.
But, nonetheless, it was still like a--I felt--you know, it was interesting. They told me in person that I was going to get kicked out, so I didn't know--I said I wanted it in writing, is what I said. They hemmed and hawed and it took them a long time but when they finally put it in writing, they didn't exactly kick me out. They decided they would give me a different supervisor and give me all these provisions and conditions and so forth. That was what they were going to do. But I knew that was bullshit.
Jacobson
Who are they?
Rousso
Oh, it was the institute. It was the Washington Institute, the head of--
Jacobson
Yes, but who were the people?
Rousso
Well, I mean, they were like psychologists and social workers--
I mean was it a panel?
Rousso
I don't even know who 'they' were. I mean, it was like the person who I talked to on the phone. I guess I had a supervisor there, but he didn't have a whole lot of power, in fact. In fact, when he told me they had asked me to leave, I said to him that that seemed really ridiculous to say someone with a disability can't do it. And he said, "You know, I kind of agree with you. Maybe you ought to go look for some other institute." So he didn't--he clearly didn't have total control there.
But the head of the institute was probably the one who I had the conversation with. And it was weird because he was someone who I had had as a teacher, and I did really wonderfully in his class. So I really felt like it was such a betrayal that he would kick me out.
Jacobson
What was his name?
Rousso
I have to tell you, I'm not withholding it, I honestly no longer remember. At the time I would have known it inside and out, but I just don't recall who he was anymore. Twenty-five years can do a lot of healing, I guess. [laughter] So--
Jacobson
Getting back to the group you formed. Did you have that conference?
Rousso
We did. We had this conference in 1982. It took us a while to get it together.
Jacobson
What was the name of that group?
Rousso
The group? The Association of Mental Health Practitioners with Disabilities, and the conference was something like, "Therapists with Disabilities: Theoretical and Clinical Issues."
Jacobson
Who came to that conference?
Rousso
Not enough people. [chuckles] It was a rather--oh, I guess, maybe seventy people there. It was a fairly small turn out.
Jacobson
Where did you have it?
Rousso
We had it at Fordham University. They had there a disability committee as part of their social work school and I had been working with them over the years, as a social worker--you know, my degree is in social work, and so I knew the person who was the head of this committee. She kind of helped me to arrange to have it at Fordham.
Jacobson
Was it only for people with disabilities?
Rousso
No, it was really intended to introduce the mental health community to the issues of therapists with disabilities. But, as is usually the case with these things, people who are nondisabled who have their own anxiety about disabilities don't tend to show up unless you make them. So it was disappointing. Adrienne and I wrote a paper together, a keynote address for this conference, which she delivered. Then we got it published so that was--I thought that was a good way to spread the word.
Where did you get it published?
Rousso
A journal called Psychiatry. It was published a few years after that. I think it was a good piece. It talked about attitudes to people with disabilities and how it relates to therapists. I think it was a good event. It was good for all of us who participated and it felt like a source of power, of strength--
Jacobson
That was 1982?
Rousso
The conference was in 1982.
Seeks community
JacobsonHarilyn, when did you meet Phyllis Rubenfeld?
Rousso
You know, I can't even tell you that. I'm not entirely sure how that happened or when it happened. You know, when I was going through this transition, trying to meet more people with disabilities and stuff, I went to a few DIA [Disabled In Action] meetings and I might have met her there. That's where I met Frieda Zames and a few other people. I never knew her, Phyllis, all that well. We were kind of these casual acquaintances. We would run into each other here and there.
Jacobson
What was your view of DIA?
Rousso
My view?
Jacobson
I meant, you went to a few meetings but you didn't really become--?
Rousso
I didn't really become a member. When I went there I met a woman who became one of my best friends in life, but she was also--a woman named Roberta Geller, who was also kind of visiting. She was a disabled woman who was kind of not so in touch with her disability identity either, so she was trying to use this as a way--I don't know, I think I couldn't really relate to the people who were there. There were no--it was kind of loud and overwhelming, and I couldn't quite cope with--not my style, and I couldn't figure out a place for myself there, to be honest. I think that they have done amazing work over the years, it's just not me, or not the way I would find my way there.
Jacobson
I wanted to ask you--it seemed like there was a period where people like you and people like Roberta Geller, and other people with disabilities who didn't really have previous contact, suddenly started to realize that disability was an issue to look at and to identify--do you have any thoughts about why that was happening at that point?
Rousso
Not exactly. For me, it was certainly personal need. Most of the work I've ever done in the world has evolved out of personal need. I have a strong need for a community and a foundation--I was kind of, as I said, little by little kind of evolving, and maybe the disability rights movement helped make it more okay to do that.
But you also talked about becoming affiliated the women's community.
Rousso
Yes, you're right about that. I think that that actually was an important factor in becoming involved in the disability community. In a way it helped to politicize me some and it also--I think in a way it was when I started to feel a little more solid as a woman, then I could feel more solid as a particular kind of woman, a disabled woman. Once I felt a little bit more grounded, then I was able to somehow consider my variation as an asset, and I begun to wonder where the other women with disabilities were in that movement.
It's interesting. Simultaneously with that group of disabled therapists, I decided I needed to put together a disabled women's group for myself that was like--I needed, since I was interested in women's issues, I needed to kind of share some of the experiences of having a disability.
Jacobson
Those were the years of consciousness-raising.
Rousso
Right. It was kind of on the tail end of it. It was more in the earlier part of the seventies that CRs were going--but I was looking for a CR group of disabled women.
Jacobson
What about disabled men?
Rousso
What about disabled men--?
Jacobson
Did disabled men come to that--?
Rousso
That group of disabled therapists? Oh, yes there were a lot, a number of men, who I liked a lot--not sure any of them have names that are known in the disability community. There was a man named Dennis Shulman, who was a therapist who's blind, a psychologist who's blind; a guy named Philip Wilson who had polio and was a social worker. There were a number of men, but I don't know that any of them became disability activists. I think Phyllis might have been involved with that. I don't know. I have to say I don't exactly recall--
Jacobson
With what?
Rousso
With that group of therapists with disabilities, I'm not sure--the group was defined so broadly that she might have been--because she did a lot of counseling, at the time, in her work. She might have come. I just don't exactly recall.
Addresses the oppression: the formation of Disabilities Unlimited, Inc., 1979
JacobsonLet's talk about how you formed your own consulting group, I think, in 1979. Disabilities Unlimited, is that right? How did that come about?
Rousso
Yes. I think it was more a vision. Disability issues and women's issues have always been essentially me. It's [Disabilities Unlimited] more a label than it is a description of
Jacobson
So Disabilities Unlimited was a vision?
Rousso
And a vehicle to do many of the things I was already doing--but to give it some credibility, I think.
Jacobson
What was that vision?
Rousso
Well, I guess it was a vision of people with disabilities doing training, consulting, speaking, educating on disability issues. To me it felt like a really--suddenly it became very important to--I was out of the closet after God knows how many years, and I felt like, we're all going to be out there now. I mean, a lot of people were out there before I was, but it was the sense that finally to have the kind of freedom to speak about disability from your own perspective, to get more people to do that.
Jacobson
Why did you think that was so important coming from where you came from? I mean, you did okay as a child and as a young adult. Why did you now think it was so important?
Rousso
I guess that experience at the institute was a real awakening. It's like, once you let it out of the box you can't put it back. I suddenly had a real clear sense of disability discrimination. I mean I had it my whole life but I never saw it quite as clearly as I saw it then. So, it kind of--I felt inspired to address the oppression in a very direct way. Plus, I'm sure it was really freeing to be out there as a disabled person to not have to be somehow passing. Although, I can't say I'm entirely free of it. I still get caught up in that fantasy of passing, but I--
Jacobson
I think we all do at some point.
Rousso
Yes. I'm sort of socialized to do that; I just do fall into it quite naturally. But, it was, nonetheless, wonderful to not have to pass and to find such a rich community of people, to have all these wonderful new friends who I liked so much and had so much respect for, who all had disabilities like, I just didn't know they were out there, and there they were, and they've become my best friends, and suddenly it's like a whole world. It somehow made me feel like--I felt very expansive. I felt very hopeful, and optimistic, and free, and there was just something wonderful about the whole experience of coming out and having an impact. I saw the work have an impact and I was organizing, doing all these weird things. It was so--I loved it. I loved doing that kind of stuff.
Jacobson
Did you still maintain friendships with nondisabled--?
Rousso
Oh, sure. I kept--I didn't give up any of the friendships, it was more, just, I needed--
What did they think of your sudden activism?
Rousso
Well, they were basically supportive. They were fairly outraged by my experience in the institute, I think. I didn't feel like they were resisting, in any way, my--I think, in an odd way, the guy who I was seeing as a therapist was--he wasn't resisting, he was, I think impressed with all the stuff I was doing, but I think at the point that I was trying to see my disability and frame my disability as a positive part of my identity, he kind of went off the deep end. I mean, he kind of saw that as pathological, that there was something wrong with that, that I was kind of taking it too far, I think. But no one really freaked out. I think it was also because it didn't happen--although it seemed immediate, I was kind of little by little by little heading in that direction, and things did take time to happen. So I was kind of evolving.
Parents' perception of career
JacobsonWhat about your parents?
Rousso
My parents--well, my mother was very proud of me, I think. I remember--I mean, she was proud of me. But she had a very different attitude toward disability.
Jacobson
Okay, I'm going to turn the tape over.
I think my mother was always very supportive and encouraging of me to do everything and anything, but she also had some limiting images of disability. There was a part of her that did not see me as disabled despite all of our discussions, and so--but she also had, it appeared to me, somewhat of a patronizing attitude toward disability. I think she--because she had done so much work in disability herself, she, in a way, she identified with what I was doing. She thought it was wonderful, but there was also a way in which she felt a little bit--she was more in the charity model in her head, to some degree, and occasionally I would see it in her comments about--later on when I would have her come and help me do stuff [with the disabled kids I worked with], like barbecues and stuff, she would make comments about the kids that suggested that she still had a lot of, in a way, a kind of pity for people who have serious disabilities. She had pride at their achievement, but there was an underlying quality of pity. I mean, that's the way she was brought up. But, she also had enormous pride. When I did that conference--she was in Florida, and she came home from her trip to Florida to come to the conference because she just wanted to be there.
Jacobson
And your father--?
Rousso
I don't know what he made of it. Because he's not a--his goal in life for me was to be, he wanted me to be an independent businesswoman. He wanted me to own my own business and he saw that therapy and consulting was a way to do it. So he was happy that I was doing that. But I don't know what he made--he, too, had rather provincial
But, nonetheless, it didn't stop him from kind of encouraging me. At some point I quit my job--this job at the therapeutic nursery, because I wanted to try and go on my own. He didn't hesitate to say, "Yes. Do it. I'll support--I'll give you money for--to help you get started." He was really supportive. He never discouraged anything but, he also didn't quite understand what I was doing. It was just a generational issue for him.
Jacobson
Well, do you want to stop?
Rousso
I think we should stop so we both don't die during the interview. [laughter] We'll have to figure out some other time to do this.
Jacobson
End of Side B.
Rousso
Okay.
II. Mentoring Project, Women's Gender Issues, and Personal Perspective on Disability Identity and Culture
Disabled women become priority at Women's Educational Equity Act program; Judy Heumann's influence, 1979
When we left off last time, we were about to talk about the work you had done with disabled women and girls. I believe it was mentoring project. Can you tell me how you got that started and what you did?
Rousso
Okay. It kind of happened by one of those wonderful accidents that sometimes happen. I was working at Spence Chapin in this therapeutic nursery, and one of my colleagues--in the agency, with whom I was sharing an office--her name is Linda Nessel--and I was talking with her. I had just gone to some conference, and I was kind of bitching and moaning about the fact that it had nothing on disabled women. And I guess it was a women's conference that I had gone to, and there was nothing on disabled women and girls, and I was kind of spinning my wheels there.
She, in addition to working at Spence Chapin, also worked at the YWCA of New York City. She is a very creative woman and does a lot of program development. So she said, "Well, why don't you think about developing some kind of program for disabled women and girls at the Y? I am sure they would go for it." Because the Y, at that time, was doing a lot of community work for women, a lot of programming for different groups of women.
Jacobson
This was what year?
Rousso
This was probably 1983 that we had this conversation, or maybe the end of '82. So we talked a little bit, and then she was kind of the mediator for me at the Y. She had a conversation with the executive director of the Y, this woman--she was quite friendly--and told her that she had this friend who was interested in doing something.
So in the course of my conversation with Linda, my friend, we were talking about what would be most strategic to do. And I supposed part of what I had told her--since we were sharing the office, I was telling her a lot of my background, and how I never knew any--as I've told you--I never knew any disabled people when I was a child. I had very little contact, and it might have made a difference to have had that kind of contact. So she said, "Well, why don't you think about some kind of mentoring program, or some kind of program for girls that could link them to older women who were doing interesting things?" And so I had one of those, "A-ha!" experiences in a way. Then we kind of cooked it up together, just in conversation.
So I went to the Y. She arranged an interview with me with the executive director. I told her what I was thinking, and she said, "Great! Let's see if we can get any money."
At that time there was a program called the Women's Educational Equity Act [WEEA] program. That was a godsend to a lot of women's programs because it was focused on programming for women, to ensure even more equal opportunities, educationally, and in general. And lucky for me, or lucky for disabled women, there had been a woman who directed that agency, the director of WEEA, named Leslie Wolfe--maybe you know her--who had met Judy Heumann.
When Leslie first started her job as director of WEEA, she met Judy Heumann, who said, "So what are you doing for doing for disabled women?" And Leslie said, "Well, to tell you the truth, I just started this job, and I don't have a clue. I am going to go look."
Jacobson
And this was out of Washington?
Rousso
This is in Washington, and I think she and Judy met a few years before my experience at the Y was going to happen--I think it was in the late seventies maybe, '79. I should know, but I don't have the exact year down. But it was around that. It was when Leslie was just taking the position. Leslie Wolfe was already working, I believe for the government, and once she heard about this position at WEEA, she decided to apply and got the job.
Her vision for WEEA was to make it a very inclusive program. She felt like until she got there it was focused on white women. So her original notion was to expand the scope of the program to include women of color. But after her conversation with Judy, she realized that she really needed to be even more inclusive than that. So what she did was kind of freaky in a way. Usually, you know, every law has regulations about what one must do to set priorities, and the regulation said something like, "If you want to change the priorities, you have to have some evidence from the public that there is a need for change." And Leslie didn't get any evidence from--I mean, she didn't have any testimonies, she didn't have anything, all she had was Judy Heumann telling her she had better think about this. You know, Judy Heumann is a powerful advocate; she [Leslie] didn't need a whole lot more than that.
Jacobson
Yes.
Rousso
So what she first did was that when she got to this job at WEEA, she found that some of the things that had been funded, in her opinion, were not very good. So she managed to
Jacobson
Do you remember what some of those programs were?
Rousso
At WEEA? The disabled women's programs?
Jacobson
The ones that got de-funded.
Rousso
No, I actually don't know exactly. It may have been not exactly that they got de-funded, but they hadn't been totally signed off on yet. And when Leslie got there, she hesitated because she saw that it was the same old same old, it was kind of not very inclusive program targeting, I mean, truthfully, white, nondisabled women needed programming too. Every--all women needed it, but she felt like she wanted to spread the resources around and make her program, as I said, more inclusive.
Jacobson
So she told Judy to write--
Rousso
She commissioned Judy to write a paper on the educational equity issues of disabled women and girls. And so Judy did, and made a very compelling argument, she [Leslie] thought. So she used Judy's paper to kind of finagle things to make disabled women and girls a priority in WEEA funding. She will tell you herself, it was not quite legitimate how she did it. She kind of did it without the usual public testimony required, but she figured no one would catch her. No one caught her.
So what that meant was that there was a certain percentage of money put aside for the different priority areas--then disabled women was one--and also that all the programs had to have some acknowledgement of the issues of the priority groups, including disabled women. So that was a wonderful gift, because it led to the development of many programs for disabled women and girls.
At that time, it was like in the late seventies, early eighties. Corbett O'Toole developed some programs--I believe it was with DREDF [Disability Rights, Education, and Defense Fund]. There was a first national conference on education and life equity for disabled women and girls that was held in Baltimore in 1981.
Impetus for the mentoring project, 1983
JacobsonI forget if I've already asked you--how did you meet Judy Heumann?
Rousso
How did I meet Judy Heumann? That is a good question. Well, I was supposed to meet her when I went to Berkeley in the late seventies, but I think something happened then. She was not around, or she was not available. What had happened was that we had kind of corresponded until that point. I don't even know when I met her. I guess what happened was that we were in communication, and as a result we kind of got to know each other.
Okay.
Rousso
And then I probably ran into her in one of these conferences, and there was this conference in Baltimore where she probably--I know she spoke--we kind of introduced, I introduced myself. So that is kind of how it came about.
Anyhow, the long and short of it is that a lot of programs were developed around that time. Then [President] Ronald Reagan came in and decided he was not too thrilled with women's educational equity, period. And so he fired, he had Leslie Wolfe fired, and the WEEA program was very much de-funded. But nobody bothered to change disabled women and girls as one of the priority areas. So although it was a lot less money, whatever money there was, there was still some interest in disabled women's issues. So that was kind of the impetus to develop this program. The thought was, well, we'll write a WEEA proposal, and if we're lucky we'll get a grant and start this mentoring program.
So the Y was really receptive, and collectively we wrote this proposal and sent it in. And it didn't get funding. It turns out in truth, usually, to get a WEEA grant you need to submit the proposal more than one year. That is just how it goes. But the Y was kind of interested in it even without the [WEEA] funding, and so their development department started to shop it around to local funders. And it was funded by something called the New York Community Trust, and the JM [Jeremiah Milbank] Foundation, both of which had some interest in disability.
Jacobson
The JM Foundation?
Rousso
Oh, it was the New York Community Trust was one, and the JM Foundation. JM has a whole track record of funding disability programs. So, anyhow they became interested, both of those foundations, because they tend--when one likes a project, they kind of get their colleagues to jump in. So those two foundations kind of jumped in with--not an enormous amount of money, as I recall--it might have been $25,000 each. So we started with a modest amount of money.
But the upshot was that I got to go to the Y and start this program. It was really a wonderful experience. I mean, first of all, it was wonderful to somehow think about offering girls something that I and many of my contemporaries never had, to get a group of interesting women together who they could meet, and feel better about themselves as disabled young women, and not have to do that kind of denial and cover-up that I had lived my life doing as a younger person.
Jacobson
Where did you find the participants?
Rousso
Well, in truth, it was a lot easier to find the women than to find the girls. I mean, to find the women I did a lot of networking in everywhere I could think of--from my own friends and contacts--I had over those past few years developed a group of friends and disabled women. And I sent letters to lots of companies, like Fortune 500 companies. And that was not terrifically successful, because this was before the ADA [Americans with Disabilities Act], and a lot of employees didn't identify as disabled, and there were lots of issues around confidentiality, and--employers either didn't know who was disabled, or weren't going to tell who was disabled in their organization.
Similarly, I sent information out to a lot of women's professional organizations, you know, Women In Journalism, Women In the Legal Profession, lots of groups. There too, there was often a sense they didn't know who was disabled among their membership, so--well, you know, it [the way I went about looking for disabled women] went from the ridiculous to the sublime. I met a woman in the elevator of the Y, a woman, a wheelchair user, who was taking a jewelry making course, and so I [laughter] recruited her. And it turned out she had her own jewelry business, she was quite a successful entrepreneur. So it was like everyone I could find--even on the streets.--But once women heard, they were really excited, particularly the women who had been disabled since childhood, because they had had the same experience that I had, you know. They didn't know anyone [any adult women with disabilities], they wished they had. So it seemed like a way to help the next generation.
Jacobson
How many women did you end up recruiting?
Rousso
Well, I had a--I can't tell you the exact number, but I am sure I had a good 100, who were on this master list, you know. I mean, like anything of this nature, a lot of people start out with great enthusiasm, and then they kind of disappear. So I can't say I had 100 active participants--you know, maybe I had twenty-five to thirty, ultimately, who kept participating. But it was a pretty impressive group, I have to say.
One of the things I realized later on was that most of the women were like super-achievers, you know, being--they had, despite the barriers, done this and that, this and that. And in truth, girls needed more of a range-We didn't want to set up for them the super-crip model as a way of life, so that it would have been better [to have offered them a broader range of women]. And ultimately we did find women who didn't necessarily go to college, but had gotten a high school degree, and then had gone on to do something satisfying. And then the goal was ultimately to find women who considered themselves having satisfying lives, but to use a broad definition of what that meant, not to define success in terms of degrees or money.
Now the girls, on the other hand, were not nearly as easy to recruit. What I did there was go to a lot of high schools that served girls with disabilities. In those days it was somewhat easier because they were more segregated. It was the eighties; there were a lot of classes of kids, even with girls and boys--it was not sex segregated, but it was segregated by disability, so that they tended to be in separate classes, or have separate schedules. So they were easier to track down.
But there were a couple of barriers that came up. First is that, you know, in adolescence, young people want to be like everyone else, and so they were not so eager to be selected for a program based on their disability status, because that to them was a stigma. And they didn't want to own up to that stigma, and I certainly could understand it. They hadn't had a positive experience of disability. They didn't see it as a source of pride. They saw it as something to disregard. So that was one issue.
The other was that some of the girls--in some ways the boys were more interested in the program than the girls, because they understood the importance of "old boys'" networks to get into the world of work, and they were more focused on their vocational futures. Many of the girls hadn't thought that far ahead and didn't necessarily see themselves as pursuing careers, or, not that they--they didn't quite know what the
Double discrimination for girls and women
JacobsonOkay. And that brings up a question of why did you focus on girls?
Rousso
I focused on girls really because of what we know, which is that girls and women with disabilities face double discrimination. They face more barriers in the world of work and on the road to independence. So it seemed to me that it would be good for them to have the strategies to deal with the multiple barriers that they were going to face. It is not that boys had a picnic--I knew that boys face barriers too.
Jacobson
I know you've written about this, and I read your article that you sent me. I forget what it was called--
Rousso
It was a long title.
Jacobson
What was--?
Rousso
I'm trying to think of it. It was something like, "What Do Frida Kahlo, Wilma Mankiller and Harriet Tubman Have in Common?" You know, Wilma Mankiller, I can't remember the name of her tribe, she's Native American, she is a woman who is the chief of her tribe--And Frida Kahlo, the artist. [ The full title is: "What do Frida Kahlo, Wilma Mankiller and Harriet Tubman have in common? Providing role models for girls with and without disabilities."]
Jacobson
I read that article. Where was it published?
Rousso
Well, it is going to be published in this book that I am co-editing on gender issues in special education, a book which hopefully will come out by SUNY Press next month.
Jacobson
Okay. I thought that that article was published already.
Rousso
No. It--I did publish other shorter pieces on the project.
Challenges of the mentoring project
JacobsonBut tell me about some of the key--one or two key issues that you found out as a result of that project and experience.
Okay. One thing I learned, which is no news, really, is how--first of all, how hard it is to engage girls with disabilities in programs, partly because they face so many barriers. Not only the resistance to coming to my program because it was all girls, and it was disability focused, but they just face a lot of barriers getting out of their house, you know, parental concerns, like parental over-protectiveness, lack of transportation, lack of experience--not enough experience to know that this kind of program can be helpful. So that--it certainly educated me on the need to be very creative in reaching out to girls and figuring out good ways to engage them, and good ways to engage their parents. And unlike other [nondisabled] adolescents, who often can declare their independence, and do more of what they want without parental involvement--certainly not everything they want, but they have more freedom--these girls, you really have to work with the parents well. So that was one thing that struck me.
Jacobson
How creative were you? What were some of the things--?
Rousso
Well, some of the things were simply going to the girls' houses and hanging out with the parents, and really convincing them first that I was not going to kidnap their kids, or bring them any harm, you know. And also to do a sell-job. I mean, all girls face some degree of parental over-protectiveness. I mean, I have rarely worked or talked with groups of girls, regardless of disability status, who don't tell me that their parents don't want to let them out of the house. So it is not totally unique, but I think the barriers are just ten-fold.
And it is true that the girls have it really difficult getting out of the house without their parents' approval, because they depend on parents for transportation, and sometimes parents help with physical needs. But anyhow, one strategy really was to literally engage the parents in their environment. And sometimes the exposure by the parents to adult women with disabilities who were out there living independent lives helped them to get a vision. Part of the problem is that parents often don't have a vision of who their daughters can become. They have a very restricted vision. They somehow imagine she is not going to go out in the world, she is going to need to be at home with us until we can't take care of her. And so to give them a more expansive vision, to give some greater motivation to let them participate--
Jacobson
I am going to interject something, if I may?
Rousso
Okay.
Jacobson
I remember a conversation I had with Judy Heumann one time. And of all the things, we were talking about crossing the street. Both of us, because we were in wheelchairs--and growing up we didn't have motorized wheelchairs--we had to actually learned how to cross the street, how to look both ways, and get used to traffic, because we never did it when we were young. It was a basic issue.
Rousso
I have a vivid memory of a friend of mine whose name is Carol Ann Roberson, I don't know if you have met her, she lives in New York City--she tells a story about how when she got her chair--
Jacobson
Okay, I'm going to turn the tape--
You were going to tell me about Carol Ann Roberson.
Rousso
Right. I'll just tell the story quickly, so we don't get too--she tells a story of how when she first got--I don't know what it was, a motorized wheelchair, or just a wheelchair--and her mother would not let her go out with anyone except her mother or her father. And she was a very social creature and was really eager to go out with friends. So one day she went out when they were paving the streets, and there was wet cement in the sidewalk. And her friend took her out, and they went back and forth on the wet cement, back and forth across the street, just to kind of give her mother concrete evidence that she could do it without her mother. Now, during this process, she unfortunately fell out of her wheelchair and got this little boo-boo on her head--which her mother was a little curious about how that happened and she [Carol Ann] simply said that someone threw a ball and had hit her in the head. So her mother never knew the whole story. But it was a good example of how kids had to be creative to get permission to go out, you know.
Jacobson
Yes.
Rousso
Anyhow, in terms of getting back to your notion of lessons--one of the lessons had to do with engaging girls. Another lesson had to do with what we already probably know, that mentoring--well, first of all, mentoring is not easy. It is probably one of the most difficult things. It sounds like, you know, a natural concept, you just mix the girls and adult women, and it just [claps hands], everything is wonderful. But in truth it is a complicated matter to get people to connect, and help them to communicate. And to deal with the age gap is not so easy. And in truth, it is probably one of the most difficult undertakings. Mentoring really requires a lot of thinking and care, in terms of how you go about it. And it is pretty labor intensive, so it is nothing to be done quickly.
But I did find that not all women with disabilities, or any women, are necessarily able to do it [mentoring], you know, because we have grown up with so many negative attitudes about disability--often we internalize some of those as adult women, and it is very challenging or tricky to make sure that women don't pass down negative baggage to the next generation. We are trying to instill in these young women a sense of pride in being female and disabled. And if the mentors are struggling with those issues themselves, as we invariably are--the question is what is coming out of their mouths? What are they communicating? Are they communicating, "It is not okay to ask for help? It is not okay to get your needs met? You should kind of minimize your own needs?" That was not the message I wanted the mentors to communicate.
Jacobson
How did you deal with that issue?
Rousso
Well, I can't say I entirely dealt with it successfully. I mean, part of what we did was a lot of training of the women on some of these issues--like we had a whole session with the women on the issue of help, and how they had learned to think about asking for help, and the barriers that they faced, with the hope that if you raised their consciousness about how hard it has been for them to ask for help, they might try to give a different message to the girls.
You held workshops with both the mentors and the girls and the parents. Tell me a little about that.
Rousso
Well, we held workshops for the girls--sometimes we would invite the parents to participate as well--on the key issues of life, like lifestyles: what does it mean to chose to be single, to have a partner, to have children, to adopt children, to be a lesbian? We tried to present the girls with really a range of lifestyles that they could choose in terms of intimate relationships and sexuality. It was tricky, to say the least, to be dealing with choices that we suspected their parents might not be thrilled that they were hearing about, or that they might be of two minds about it. But we decided that the girls were smart enough to know what they would and wouldn't tell their parents, and by and large that was true.
Jacobson
Were these girls physically disabled or did they have developmental disabilities or learning disabilities?
Rousso
By and large we focused on girls with physical disabilities, and some sensory disabilities. There were some girls who also had learning disabilities, but no girls who had developmental disabilities. That was kind of a choice that was a source of ambivalence for me. I mean, ideally you would want a totally inclusive program, or I would want a totally inclusive program. But my feeling was that, starting a program from scratch, it was probably hard enough to start it up, and that it might be better to focus on one segment of the disability community and see what happened with it. And my own expertise was much more with people with physical disabilities, so that became pretty much the primary focus.
Another issue was, we really wanted to build a sense of community around the group for the girls. And girls, like everybody, internalized a hierarchy of disabilities, and they had a sense that some are more socially acceptable than others, and on that hierarchy, girls and boys with developmental disabilities were kind of on the lower rung. So the question is, how to build those bridges, at a time when we were just trying to deal with the basic stigma of disability, period. I mean, it was a choice done out of pragmatism. I'm not sure I would do it again. I mean, in the best of possible worlds, I would want a more inclusive program, but that is where we started.
Jacobson
How many years did that program go on?
Rousso
Well, some transformed version of the program continues to this day. I was there until 1990, and it really got off the ground in 1984, so I was there for six years. And then when I left I hired someone, a woman named Angela Perez, to take over. She had already been working in the program. Fairly quickly, however, she transformed the program into a coed program. I think she did that partly for funding purposes. You know, we were starting at that point to get city funding, and it is easier to get funding for programs that don't sex segregate. So I think for that reason she decided to make it more of a coed program. I should say another piece of the program in addition--the mentoring piece was for girls from thirteen to nineteen. We also, by the time I had left, had started a program for the older girls, you know, young women, certainly, twenty, twenty-one to twenty-nine, who often wound up doing nothing after they finished school, you know, there was no future for them. They weren't placed in--they didn't go on to post-secondary school, they didn't have jobs, they were kind of just hanging out.
So that part of the program was kind of evolving. Not so much mentoring, but more--kind of a support group, and a problem-solving group.
Jacobson
What would you say about the success of the program?
Rousso
Well, I think it was mixed. I think for some girls it was fabulous, and they got a real connection to disabled women, and it gave them a bigger vision of who they could be and become. And for some girls, they never really fully got engaged, and so it didn't, I'm sure, have much of an impact. And then the research that we did, and it wasn't heavy-duty scientific, although we did have an outside evaluator--Dr. Patricia Campbell--said that at least some girls became more successful, became more independent; some girls began to make more expansive career choices--I mean, the goal was really to get the girls to expand their range of their own expectations for themselves vocationally, educationally, and socially, and to make different--to have more expansive choices. So for some girls I have to say it worked. For others, it didn't.
My sense about it, though, is that these things take time. These are not one-shot deals. You know, you really--to really have an impact on a young person, and a young woman, you have to hang in with her for lots of years, and be a force--a force, and help her form her vision. And also mentoring means helping a young person form her vision, not imposing your vision on her. And that is always the temptation when you think when you have got it together, you want to say, "Here! I did it! And why should you have to go through all of those struggles when I have figured it out? Here is how you should do it." But the truth is, part of growing up is figuring out your own struggles.
Jacobson
And it is more difficult for a young girl or a young woman with a disability because she's entrenched in her family and her family's values, and society's values about her disability, so you have your work cut out for yourself. [laughs]
Rousso
[laughs] You certainly do. You have to be a counterforce to a lot of values and a lot of people [like parents, peers, teachers] who truthfully mean well, but they have very limiting visions for their children, for their friends, for their--you know, they don't get it, they don't see the bigger picture, they don't see the possibilities, and there you are, a lone counterforce trying to say, "Well, think about it, you probably could try this." It is a struggle.
Jacobson
And I also think that you need to get the parents on your side.
Rousso
Which can also be tricky, when sometimes, some parents have a--or a mother has a daughter with a disability and the daughter's needs are so time consuming that the mother can become very involved in her life, and in a way a lot of the mother's identity becomes hooked up in being there for her daughter, and being the one who can anticipate what she needs, meet her needs, and assist her. And someone--you have another person entering the scene, you know, a mentor, or anyone who is threatening that bond--it can be pretty threatening for the mother, who has carved out her identity in a helping role. I don't think it is pathological, I think it just kind of happens. And particularly if you have a strong advocate mother who has been doing that for, you know, years and years and years. It is kind of hard for her to give up that role and to kind of reformulate her life in terms of her--the mother's--own needs. It is quite a shift.
Need for disability community to formalize mentoring for youth
JacobsonDo you want to say anything else about that program?
Rousso
Well, the only thing that I would want to say is that it was, and remains a very good idea, much needed, but for some reason it hasn't really taken off. My fantasy about it was that I would develop this program, and then see it replicated in other places. And to some degree that's started, but it hasn't--unfortunately, disability activism in the disability community, with a big "D," hasn't really incorporated the youth. Maybe it is starting to do it now, but there hasn't been enough, you know. It is probably like any civil rights group, the primary focus is kind of on the adults who are out there and really need to advocate for themselves, and we haven't quite gotten to the kids. And so it disturbs me that we are not putting more of our energy into the next generations.
Jacobson
What about the independent living programs?
Rousso
Well, there, my sense of it is that they are doing some things now with the younger people, and that is great--I just don't know how formalized it has been in terms of mentoring. I mean, they may be focusing on services, and--and that is important. I mean, connecting with young people, getting them to know their rights, and the exposure to the leadership in independent living centers is great, I think.
I think we need more, something more formalized, something really focused on some kind of mentoring process. And, you know, most of the independent living centers don't have gender-specific kinds of programming. I really do think girls need separate programs--and probably boys need their own programs too. There are issues around being women, and issues about being men, that are hard to address in a coed group, and that this really--somehow girls with disabilities have not gotten on the radar screen of--this is not just in the disability community, it is also in the women's community. I mean, there has been, over the past ten years, more, a lot of interest in girls--girls' development, girls' programming, the strength and resilience of girls in general--there is a huge amount of research out there, but none of it includes disabled girls. They [disabled girls] have been--they continue to be invisible, and they need to be incorporated. Their issues need to be incorporated, and their strengths. I mean, I have to tell you, many of the girls that I have met are really tough cookies--they are strong, they are resilient, they have led amazing lives--they have figured out a lot of their ways through a lot of issues, and the whole sisterhood--their nondisabled sisters could learn from them. I mean, they have a lot of stories to tell. We need more stories about them. But it is not out there yet.
Jacobson
That sounds like a good area for further research.
Rousso
Definitely. Definitely.
Seeks disability identity in Berkeley
JacobsonI would like to go back, you said that you came out to Berkeley--
Rousso
Right.
Jacobson
--in the late seventies, early eighties. What was that like?
Rousso
What was it like to be out there?
Jacobson
Why did you come out, and what did you think of Berkeley at that time?
Rousso
I think I came out because I was looking--this sounds so silly--I was looking for my disability identity, I guess, you know. After being closeted for so long, I was kind of now out of the closet. I had kind of filed this lawsuit, and I had started this group for therapists with disabilities, and I felt like there was a whole world out in Berkeley that had been doing activism, and--
Jacobson
And that was the lawsuit against--?
Rousso
Oh, against the institute, the psychotherapy institute that had kicked me out. So I was doing--I was starting my own activism. You know, I had started to form a community for myself, but--when I was in New York, part of my networking involved some contact with people like Frieda Zames, who had been so active for a million years, and Carol Ann Roberson, who was doing interesting work at Rusk [Institute]. So I had begun to meet these disability activists--and Bobbi Linn, I met her at a DIA meeting--I begun to meet these people, and they kind of asked me, "Do you know this one, do you know that one, do you know about this, do you know about that?" And I realized I didn't know nothing! [laughs] So it was like, "Aha!" That I had kind of--I, my primary involvement had been through the women's movement and not the disability movement, and I realized I really needed some education and exposure. And so I guess I went to Berkeley because that was the seat of activism at that time, and [they] had done a lot of stuff, and I wanted to meet some of the leaders, and kind of learn--I thought I could kind of take more stuff in through osmosis, I guess, you know. So--
Jacobson
You visited the Center for Independent Living. What did you see? What was your impression?
Rousso
You know, I think I had a very superficial impression. I came out to Berkeley totally by myself, and I was kind of wandering around there [laughs]. I mean, it seemed like there were a lot of strong people. One thing that struck me was that there were a lot of strong people with disabilities there who were very articulate, who knew the issues, who were also very welcoming. That was my impression.
Jacobson
Like who?
Rousso
I can't tell you because I, you know--what happened is, I wound up there, I was supposed to meet Judy Heumann, who didn't have time to meet, or was somewhere else or something, but she said, "Why don't you just go over there?" So I just went over
Jacobson
[laughs]
Rousso
I don't know what I was doing. I was just trying to get exposure, you know, and I didn't quite--it would have helped to have more of a guide, you know. But short of that, I just kind of fumbled my way around. I mean, I do remember, although you don't, having lunch with you. I guess Bobbi Linn must have given me your number, and we had lunch somewhere in Berkeley. And I remember wandering around and being struck by how many people there were out there who were disabled, and in wheelchairs, and all the curb cuts, and how accessible, and how when we went in to the restaurant nobody did the usual, you know, gawking kind of thing that was so typical of New York--that it was a much easier place to be disabled. That was kind of what struck me.
Jacobson
I am going to get a new tape.
Rousso
Do you think we need a--? Okay.
Jacobson
Yes.
Did Berkeley, or coming to Berkeley, have any effect on you?
Rousso
Well, I am sure--I suspect it just confirmed my sense that there is a community out there of disabled people, of disability rights activists. I don't know, I guess it was the sense that maybe there was some kind of a home, or something like that. I mean, in a way I had been at a disadvantage by the fact that I had been so mainstreamed for so many years, you know. When I first started to get into disability stuff I was already close to thirty years old. So until then--and the one thing I neglected to mention is that when I graduated college I had a summer job in which I worked for a woman who was an economist, who totally coincidentally had CP. So it was very shocking to see her when I went to my job interview. But she was a powerful influence.
Jacobson
I think that we talked about that.
Rousso
We either talked about it, or I certainly wrote it in an article.
Jacobson
What was her name?
Rousso
Her name was Betty Bock, and she worked at the National Industrial Conference Board--now it's the Conference Board. That was in the days when I still was an economist, and I had just graduated college. I was going to go to graduate school in the
Jacobson
I think in that article you wrote about how you never talked about disability with her?
Rousso
Well, you know, we talked a little bit, but she was not really out of the closet much more than I was. I mean, talk about mainstreamed lives, she certainly had a totally mainstreamed life. She had told me she had never talked about it. She never even knew what her disability was until her twenties, when she went for a government job, and one of the questions on the application was, "What is your disability?", and she had no clue. So she went to the doctor and got the diagnosis. So she has lived her life as a disabled/ nondisabled, or nondisabled/disabled person, so--with me, she talked--we talked some, because, I mean, first of all, it was so shocking to be sitting across from each other. It was like amazing, I think, for both of us to see each other unexpectedly. And I think one of the first things she said to me was, "You have what I have, or I have what you have," or something like that. We didn't talk a whole lot about it because that was just not part of the way she was in the world, and certainly was not part of who I was at that time. But it was kind of there. I was taking in the fact that she had a husband, and she had a life in ways that I didn't expect [that contradicted my stereotypes about disabled women].
Destigmatizing disability
JacobsonYou brought up a point I wanted you to talk a little more about. Today with the ADA and with the focus on inclusion, or mainstreaming, or integration, what effect do you think that will have on young people with disabilities?
Rousso
Well, I think it partly depends on how they are included or integrated. I mean, I think the one compelling thing about inclusion is that usually you get a higher quality education when you go into inclusive or mainstream settings. I mean, at least that was my experience I got. And experiences--like kids who are in separate classes tend to get inferior educations, and that is a big problem when you go out in the world. On the other hand, it partly depends on whether--how isolated they are. My experience was very--I was the only one, and I don't have a whole lot of sense that people are doing this inclusion or mainstreaming with the eye to the notion that being the only one is not wonderful. It is a very isolating experience, and you need some critical mass so that you can feel like you are part of both groups, and--
Jacobson
I don't remember if I talked about this with you or with Bobbi [Linn]--when you were growing up, what did you think, what did you feel when you saw other kids with CP? I know your mother worked for the Cunningham League--
Rousso
I felt repulsion, and disgust, and discomfort, and I couldn't wait to run away to the farthest corner of the universe.
Jacobson
So it seems like--I get this impression from other people I know with disabilities that on the one hand, disabled people when they are young don't want anything to do with
Rousso
Yes, it is. It is. I mean, I don't know, I think it is an issue in terms of how to get kids who are disabled to want to bond to other kids who are disabled when they have other choices, less stigmatized choices. I mean, my fantasy is always that when disability becomes less stigmatized, then there will be an easier way for kids who share this disability status to connect. And that a lot depends on the attitudes in the environment, and how the kid is presented, and--I mean, I don't know. It might have been that how I met the kids that I saw with CP was in this rehabilitation center where I perceived them as very limited and not out in the world, and not leading very interesting, very good lives, and I sure didn't want to be like them. But maybe if I had met--maybe not kids, but even, you know, adults who were economists and neuroscientists, who were something [appealing], or--that I would have a vision--I mean, you need to de-stigmatize the vision, [that] is what is needed. I don't know how to do that, but that would be my guess, is that if--I suppose how you do it is you integrate disability into the curriculum, and you include disabled adults, and when you have all these events bringing community people in, you have disabled adults who are doing interesting things. Then you kind of make disability a part of life, in a way. Then it is easier to accept yourself and to make those bonds with disabled people. But we are not there yet.
Jacobson
How far away? [laughter]
Rousso
I don't know. Well, I don't think disability is in the curriculum at all. I mean, part of what I would like to see, and something I believe strongly, is that disability is not just a deficit, it is an asset, that it affects in a positive way one's perception and experience of the world. And so it is a positive aspect of diversity to have kids with disabilities in your class, and the trick is to have teachers figure out how to use that as an asset, not as a headache, which is kind of how they see it now.
Discussion of disability culture
JacobsonThat leads me into my next question. Is there a disability culture?
Rousso
Say it again, is there a disability--?
Jacobson
Culture.
Rousso
Culture.
Jacobson
People are now talking about disability culture. What are your thoughts?
Rousso
I don't know exactly what the word culture means, but I do feel like there are certain--the experience of having a disability influences people's values and their attitudes, and their ways of being and exploring the world, if that is what we define as culture. I think of culture in terms of anthropology and--I am not sure, and I know there are all these formal definitions of culture.
But I think of it more in terms of the disability experience, the experience of living with a disability. Being in the world with a disability affects your sensibilities, and how you perceive the world, in a positive way. I mean, I am sure--there is no question, there are also limitations that it imposes on you. But it expands your vision. I think it fosters creativity, it fosters creative problem solving, it affects how you view difference. You have a different take on difference, you have a different take on time, you have a different take on interdependence. I mean, there are lots of ways in which the disability experience affects your experience of the world in ways that I think could be helpful to the entire world--if it could be seen in that way, and not as the deficit model, which we still get hung up on, I think.
Jacobson
I think you put that so well.
Rousso
Well, that's good.
Jacobson
It's something that's really hard to articulate. I think you really said it well.
Rousso
Well, you know, I've been trying to do some work with this in terms of science, science education, in terms of getting science educators to see that when you have kids with disabilities in your classroom, you can mine their experiences, and--
Jacobson
Science?
Rousso
Yes, science, in math and science. You know, I just liken it to gender. When you are--women, they have a different take on certain things that affect the flow of science. I think if you have a disability it influences--it can influence how you go about solving problems or defining problems, or the kinds of problems you choose to work on, and that it is affecting or stimulating scientific experience of inquiry, you know.
Develops educational materials
JacobsonLet's talk about the work you are doing now?
Rousso
Okay. I mean, a lot of the work that I have done since leaving the Networking Project has involved developing--writing, I have done quite a bit of writing, and I have been working on developing materials that are designed to educate, often educators, on the issues of girls and women with disabilities.
Some of the things I have done have been, like, very basic. Like I was telling you, we don't know enough about disabled girls, so I have been working on this literature search, like, "What is it that we know about disabled girls?" The truth is, we might know more than we realize, but the research is scattered around the universe. So I've been trying to cull what we know and bring it together. I have been working for WID [World Institute on Disability] and RI [Rehabilitation International]. I was developing this paper on the status of disabled women and girls internationally. It is more to get the--I am really eager in terms of--to get this information included in mainstream papers on girls and women. And the way to do that is to show what we know.
How have you been able to get funding?
Rousso
It is very difficult. [chuckles] I mean, I have been--sometimes I have been fortunate, like I have been involved in some--coediting this book on gender issues in special education [The title is Double Jeopardy: Addressing Gender Equity in Special Education, published in 2001 by SUNY Press]. That was through what was started as a WEEA grant. WEEA was still alive. It is on its last legs, I am sorry to say. But I was involved in a grant that enabled me to work on that.
Jacobson
Who are your co-editors?
Rousso
My co-editor is a man named Michael Wehmeyer. He was formally an assistant director of the ARC [Association of Retarded Citizens], the headquarters in Texas. The ARC is an organization that focused on people with developmental disabilities. [Now he is at the University of Kansas, where he teaches and is Director of the Beach Center on Families and Disability there.]
Jacobson
How do you spell Wehmeyer?
Rousso
It is W-e-h-m-e-y-e-r. We kind of met by chance. He had gotten a WEEA grant, unrelated to me, and I was presenting at a conference that he was attending. And we kind of met, and then he got this idea to develop some materials, and so he recruited me to kind of work with him. And it has been--I mean, you wouldn't think--what is very nice about this collaboration is that here I am working with a nondisabled man on disabled women's issues. It is an unlikely marriage, but actually worked quite well.
Jacobson
Have you been involved in the independent living centers?
Rousso
You know, relatively little--I was on the board of directors of BCID for awhile, Brooklyn Center for Independence of the Disabled. I really could not, I didn't get engaged with those, I can't exactly tell you why, but I didn't. Other than that, I was much more involved in women's organizations, trying to bring a disability perspective to them.
Jacobson
In women's organizations--
Rousso
Right.
Appointed to the New York City Commission on Human Rights
JacobsonYou were also involved in the New York City Council on Human Rights.
Rousso
Actually it was New York City Commission on Human Rights, that is right. That was something I got into through Carol Ann Roberson. She was the head of what was then called the Mayor's Office for the Handicapped, now the Mayor's Office for People with Disabilities. And Mayor Koch was kind of reforming the Human Rights Commission and wanted a very diverse group of people. I was selected to have a disability
Jacobson
The Human Rights Commission included people who were nondisabled and from ethnically diverse--?
Rousso
Yes, it administers the Human Rights Law, the New York City Human Rights Law which prohibits discrimination based on race/ethnicity, gender, religion, disability and a host of other factors. It is actually a very strong human rights law, I think probably one of the strongest in the country, so that it is not focused by any means on disability.
Jacobson
And it deals with what?
Rousso
Well, it deals with the implementation of the Human Rights Law, which is that we have this law, and when cases come up that involve the law--although the--the Human Rights Commission--I was like a commissioner--it is more a policy making body, but it also reviews all of the cases reported to the Human Rights Commission--
Jacobson
Discrimination--?
Rousso
Discrimination cases, right.
Jacobson
In housing, or employment?
Rousso
Both. It is a very comprehensive law. It included housing, it included employment, I believe it included public accommodations, quite a comprehensive law against discrimination--for businesses, and--it is actually in some ways stronger than the ADA, because the number of employees you have to have to qualify [i.e. to be required to comply with the law] is like three [as opposed to a larger number in the ADA]. So if you have three or more employees, you are covered by--I think, whatever the number is--you are covered by the law. So the agency both implements the law, and also tries to address human rights issues in the city that come up.
So the Commission has developed strategies to prevent discrimination, and to kind of promote community relations; this is what has been a lot of the work. It has involved kind of going to different parts of the community, holding hearings. For example, when I was there we held hearings on discrimination in the construction industry. We had a set of hearings on that, and a whole host of other human rights issues. What I very much like is when disability gets included in human rights rather than having a very segregated approach, which--I mean, sometimes you need separate things [strategies] to highlight it [disability], but often the most--for me, ultimately I think it is really important to have it included as one of the civil rights, and not have it out there someplace on its own.
Work with women's funding movement
JacobsonWe covered a lot of ground. Is there anything we didn't talk about that you would like to talk about, or anything you want to add?
Rousso
Probably the only other thing that I have been involved in is that there has been a whole women's funding movement in the past ten or fifteen years, which is the recognition that, in terms of philanthropy, most of the money--very little of the money from private [or public] sources gets directed at women. And so there is now a women's funding movement in New York, in this country, and actually around the world. And one of things I have been involved with is both sitting on boards of women's foundations like the Ms. Foundation for Women and the Sister Fund, and doing some training with something called the Women's Funding Network, which is the collaborative body, you know, the collective body of all the women's funds in the country and Canada.
Beijing Conference; struggle between two worlds
JacobsonBy the way, did you go to the Beijing (women's) conference?
Rousso
I did go to the Beijing conference. I went as one of the delegates of the Ms. Foundation for Women. The Ms. Foundation funded thirty-five community activists from around the country to go to Beijing, and so I went as part of their delegation. As you know, it was a very hard place for disabled women to be because there were so many accessibility issues, and because in China attitudes toward disability are pretty horrendous. And so it was a difficult experience. But in a way it was, for me, also an experience of getting torn between disabled and nondisabled worlds--I was there in a delegation of largely nondisabled women. There was a whole disability community group there, and I was constantly struggling with my loyalty, it's where--should I go with this group, should I go with that group? In a way, that is part of my lifetime struggle that has resulted from growing up, for the first thirty years of my life, in a nondisabled world. I feel like I am always on the border, you know. I put my foot in one, and my foot in the other, and I can't, I never 100 percent feel on solid ground, because neither community fully encompasses who I am somehow, or my life experience. It is a confusing place.
Jacobson
Don't you think that's normal for most people?
Rousso
Don't I think that is normal for most people? It probably is. It probably is. And somehow it feels more accentuated for me, somehow. But that is probably right. I think a lot of people kind of sit on the border, and don't, like, feel fully connected--but my fantasy is always that I'll find some place--
Jacobson
[laughs]
Rousso
--to be fully welcome, connected, and--you know--
Do you not feel fully welcome in the disabled rights community?
Rousso
I do. I don't think--I don't feel not fully welcome--instead I have created this barrier for myself based on my life experiences that I don't feel 100 percent at home, you know?
Jacobson
A barrier?
Rousso
Well, yes. The barrier of my life experience. You know, I--those thirty years of not acknowledging that part of myself, I have kind of paid a price for that. I don't somehow fully feel at home in that world. I mean, there are some times when I feel wonderfully at home. But maybe you are right. Maybe that is true for everybody. There are times when I really feel a sense of community, and then other times when I feel really isolated. So it is a struggle. I guess life is a struggle to find your identity. Because there are so many identities, you know? I mean, I am disabled, and I am Jewish, and a woman, and a Sephardic Jew, and I--you know, I like painting, and I like this, and I don't like that--and it's like there are zillions of identities one has, and to find a place that kind of accommodates them all or appreciates them all, where I feel safe with all of who I am, with what I bring, is hard to do.
Jacobson
What did you mean by safe? Wait, I'm going to turn the tape over.
Rousso
Okay. Good, that is good.
What do you mean by safe?
Rousso
I am not sure how exactly to articulate it. It is just--I think it is part of my history of hiding parts of myself. It is--the kind of model I use is having hid my disability status for so long, and behind that was having grown up where--growing up when I did, there was often a sense that behind--it was not so only that I was hiding my disability, but the assumption that to be disabled meant you were a freak, or some kind of monster, or some kind of terrible thing. I was very invested in hiding that part of myself; I didn't want it to come up--I was often afraid. I think I have kind of--I haven't fully resolved--I think that is the kind of thing you kind of live with--the freak and I have made some peace. [laughter] In fact, I kind of see her as an asset from time to time. But it is kind of that model, that there are different parts of myself that I feel like they are acceptable in some places and not acceptable in others, and there is a fear that if you let all of it hang out, that there will be a lot of judgment. So safety has to do with not so much physical harm as judgment, you know, fear of judgment. It also feels like being by myself is the safest place, although I have to say, I am also my worst judge.
Jacobson
[laughs]
Rousso
But one never knows what will come up, you know, I never know who--different parts of myself will emerge, and where it will and won't be acceptable, that is kind of the sense in which I talk about safety.
Relationship with partner
JacobsonIs there anything else you want to add?
Rousso
No, I suppose the only thing I want to add is maybe a little bit about my partner, Gene Brown, who has been my partner for fifteen years, who is a freelance writer, and certainly the love of my life. And given that I grew up not expecting to have a partner or a love of my life, it is a kind of great gift that we found each other. And you know, I think we struggle with each other's secret parts, and I think working on a relationship is never easy, you know?
Jacobson
How did you meet Gene?
Rousso
We met through an ad that I wrote in the New York Review of Books. That is quite a confession, we often tell a different version of the truth. But that is the truth.
Jacobson
What kind of ad?
Rousso
It was a personal ad. You know, I said--I described myself--and I did include the fact that I have a disability. That is always a question, a controversy among disabled women, and probably men, about whether to come out about that. But I kind of figured I didn't want to be with anyone who couldn't deal with that fact, even in print. I mean, other people would say that it's much better to deal with the person rather than the stereotype, but I didn't want to get rejected immediately.
Jacobson
Do you remember how you worded that part of the ad?
Rousso
I think I just said I had a--I might have copped out a little bit and said I had a mild disability, which I suppose was a word that a doctor used 1,000 years ago. I think that is all I said, I didn't even give the specific diagnosis, you know, the specific diagnostic category or whatever, I just used that. And it is interesting--Gene said that when he first saw that word he was hesitant, you know, that in a way it was an initial barrier for him, but that there was enough in the ad, enough other things in the ad that interested him, that he decided to proceed. So I don't know, for me I guess it was important to be up front about it.
Jacobson
I take it he doesn't have a disability?
Rousso
No. He is nondisabled. And he had had very little contact with people with disabilities until--although he had an uncle who was quite seriously hearing impaired. But he didn't really have any firsthand experience. You know, it was--I mean it was a barrier in the sense that any difference, any significant stigmatized difference between two people can be a barrier. But I think we just kind of worked on it. And it kind of worked. But I had done ads for a number of years on and off, and I had met some interesting people, and some people who had real pathological problems around disability. But it worked for me.
Jacobson
Great. Well, I think I've worn you out enough.
Okay.
Jacobson
So, thank you. It was really--I've wanted to get to know you for a long time. And this was a great reason to do it. And I think it's been a valuable interview. So thank you.
Rousso
Oh thank you, it was actually a good experience to revisit my life.
Denise Sherer Jacobson
Interviewer/Editor
Regional Oral History Office
Disability Rights and Independent Living Movement Oral History Series
Denise Sherer Jacobson, M.A., is the author of the memoir, THE QUESTION OF DAVID: A Disabled Mother's Journey Through Adoption, Family, Life (1999). Her personal essays based, in part, on her lifelong experiences of having cerebral palsy, have appeared in numerous newspapers, magazines, college texts, and anthologies such as Bigger than the Sky (The Women's Press, 1999), Prejudice (Hyperion, 1995), and The Adoption Reader (Seal Press, 1995).
She received a B.A. in Sociology with a background in Journalism from Long Island University in Brooklyn, New York, and an M.A. in Human Sexuality, Marriage and Family Life Education from New York University. In 1978, she entered a yearlong certificate program in Sexuality and Disability Peer Education/Counseling through the University of California Medical Center in San Francisco.
In the late 1970s and early 1980s, Ms. Sherer Jacobson worked at Berkeley's Center for Independent Living as a counselor and project manager. She later became coordinator of the Sex and Disability Information and Referral Project at the United Cerebral Palsy Association's San Francisco affiliate.
Ms. Sherer Jacobson continues working to promote education and awareness of the social and political rights of people with disabilities.
Harilyn Rousso
Research Interviewer/Editor
Regional Oral History Office
Disability Movement History
Harilyn Rousso is Executive Director of Disabilities Unlimited Consulting Services, an organization that provides consultation, training and research on disability equity issues to promote equal opportunity for people with disabilities.
A woman with a disability, cerebral palsy, she is an educator, social worker, psychotherapist and advocate who has worked in the disability rights field, with a particular emphasis on issues of women and girls with disabilities, for more than twenty years. Ms. Rousso is the founder of the Networking Project for Disabled Women and Girls of the YWCA/NYC, a unique mentoring program that has been replicated widely, the executive producer of the documentary Positive Images: Portraits of Women with
Disabilities, and author of numerous publications on gender and disability, including Double Jeopardy. Addressing Gender Equity in Special Education (2001, SUNY Press) and Strong Proud Sisters: Girls and Young Women with Disabilities (2001, CWPS). Her work has also included extensive research and interviewing activities; for example, she conducted landmark research on the sexual harassment in school of girls with disabilities involving extensive interviewing of more than forty youth, and has been an interviewer for the Regional Oral History Office of the Bancroft Library.
In addition, Ms. Rousso is a member of the board of directors of the National Women's Hall of Fame and the Center for Women Policy Studies, a former board member of the Ms. Foundation for Women, the Sister Fund and Educational Equity Concepts, and a former commissioner with the New York City Commission on Human Rights.
Courtesy of Regional Oral History Office. The Bancroft Library. University of California, Berkeley. Berkeley, Calif., 94720-6000; http://bancroft.berkeley.edu
http://content.cdlib.org/view?docId=hb5n39n7m6&brand=oac4
Title: New York Activists and Leaders in the Disability Rights and Independent Living Movement, Volume III
By: Rousso, Harilyn, editor
Date: 2004 (issued)
Contributing Institution: Regional Oral History Office. The Bancroft Library. University of California, Berkeley. Berkeley, Calif., 94720-6000; http://bancroft.berkeley.edu
Copyright Note: Copyright status unknown. Some materials in these collections may be - protected by the U.S. Copyright Law (Title 17, U.S.C.). In addition, the - reproduction, and/or commercial use, of some materials may be restricted - by gift or purchase agreements, donor restrictions, privacy and - publicity rights, licensing agreements, and/or trademark rights. - Distribution or reproduction of materials protected by copyright beyond - that allowed by fair use requires the written permission of the - copyright owners. To the extent that restrictions other than copyright - apply, permission for distribution or reproduction from the applicable - rights holder is also required. Responsibility for obtaining - permissions, and for any use rests exclusively with the user.