Disability Rights and Independent Living Movement Oral History ProjectNew York Activists and Leaders in the Disability Rights and Independent Living Movement: Vol I
Interviews conducted by
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Acknowledgements
The Disability Rights and Independent Living Movement Oral History Series was funded primarily by a three-year field-initiated research grant awarded in 2000 by the National Institute on Disability and Rehabilitation Research (NIDRR), an agency of the United States Department of Education, Office of Special Education and Rehabilitative Services. Any of the views expressed in the oral history interviews or accompanying materials are not endorsed by the sponsoring agency.
Special thanks are due to other donors to this project over the years: the Prytanean Society; Raymond Lifchez, Judith Stronach, Dr. Henry Bruyn, June A. Cheit, Claire Louise Englander, and the Sol Waxman and Tina P. Waxman Family Foundation.
Series History
by Ann Lage
Disability Rights and Independent Living Movement Oral History Project
Historical Framework
The latter half of the twentieth century witnessed a revolutionary shift in the worldview and legal status of people with disabilities. In major cities across the United States, people with disabilities began in the 1960s and 1970s to assert their rights to autonomy and self-determination and to reject the prejudices and practices that kept them stigmatized, isolated, and often confined to institutions or inaccessible homes under the care of family members.
Within a few years of each other, groups of people--usually young, often with a university connection, and frequently wheelchair users with significant physical disabilities--formed organizations in Berkeley, New York, Boston, Denver, St. Louis, Houston and elsewhere to foster independent living in the community and to advocate for laws and policies to remove barriers to autonomy. Characterizing these groups, which formed relatively independently of each other, was the evolution of a new core set of beliefs that gave a distinctive character to this emerging disability rights and independent living movement. Their members came to insist on self-determination and control over their organizations. They resolved to make changes in their own lives and in society. And as they engaged in political actions, they began to recognize the shared experience of discrimination and oppression among groups with diverse disabilities.
Very quickly, informal regional and national networks of activists developed, often including people with a range of disabilities, who shared information about the nuts and bolts of funding, peer counseling, and service delivery. They joined together to advocate for essential personal assistance services and for the removal of architectural and transportation barriers. These networks were formalized in national organizations, such as the American Coalition of Citizens with Disabilities (founded in 1975), and national gatherings, such as the 1977 White House Conference on Handicapped Individuals, which served in turn as catalysts for national and grassroots organizing on a cross-disability basis.
From the beginning, the movement was a part of the activist and countercultural climate of the times, evolving within the context of civil rights demonstrations, antiwar protests, and the emerging women's and gay rights movements. Early leaders such as Judith Heumann, Fred Fay, Ed Roberts, Lex Frieden, and a host of others conceptualized their issues as a political movement, a struggle for the civil rights of people with disabilities. A wide-ranging group of activists absorbed this civil rights consciousness and cross-disability awareness during a series of defining political actions, such as the nationwide sit-ins and demonstrations in 1977, organized to demand the issuance of regulations for section 504 of the Rehabilitation Act, and during the subsequent peer trainings on the rights of people with disabilities, which were carried out nationwide.
As the political movement grew, the new cadre of activists made connections with the emerging parents' movement and its efforts to free people with developmental disabilities from the massive and dehumanizing state institutions of the time. A series of landmark federal lawsuits, most notably PARC v. Pennsylvania (1972) and Mills v. Board of Education (1972), established for the first time a right to a public school education for children with disabilities. Alliances and coalitions also developed with a number of traditional, disability-specific organizations, which were themselves undergoing changes during this period.
New organizations devoted to pursuing legal and legislative reforms, such as the Disability Rights Education and Defense Fund (1979), ADAPT, a grassroots direct-action organization (1983), and a growing number of other local, state, and national disability organizations and alliances, profoundly influenced national policy in education, transportation, employment, and social services. Their best known legislative victory was the passage of the Americans with Disabilities Act in 1990, which, although compromised by subsequent court decisions, offered broad civil rights protection for disabled Americans and has served as a beacon for the creation of disability rights legislation in fifty other countries.
Less concrete than the legislative accomplishments and legal cases, and still evolving, is the shift in attitudes and consciousness that was driven by, and has transformed the lives of, people with a wide variety of physical and mental disabilities, challenging the notion of disability as stigma and instead embracing disability as a normal facet of human diversity. Theoreticians and artists with disabilities play a prominent role in defining and communicating concepts of disability community and disability culture, and academicians are promoting disability as a category of cultural and historical analysis.
These achievements, as significant as they are, have not ended the discrimination or the prejudice. Indeed, the first years of the twenty-first century have seen several Supreme Court decisions which have limited the expected scope and effectiveness of disability rights law, and many disabled Americans remain economically and socially marginalized. While the need for change continues, the tremendous accomplishments of the disability rights and independent living movement cannot be denied. American society has been profoundly transformed, and any accurate account of the social and political landscape of the late twentieth century will acknowledge the contributions of disability rights and independent living activists.
Project Design, Interviewees
The Disability Rights and Independent Living Movement Project at the Regional Oral History Office, the Bancroft Library, UC Berkeley, preserves, through oral history interviews, the firsthand accounts of the activists who have made significant contributions to the origins and achievements of this movement. The Bancroft Library also collects, preserves, and provides access to the papers of organizations and individuals who have been a part of the struggles for disability rights and independent living. All of the oral history texts, finding aids to the archival records, and selections from the archival papers and images are available on the Internet, as part of the Online Archive of California, California Digital Library.
The first phase of the project, completed in 2000, documented the movement during its formative years in Berkeley, California. Berkeley was the site where the concept of independent living was most clearly articulated and institutional models developed, originally by and for students on the Berkeley campus and soon after in the community, with the founding of the nation's first independent living center in 1972. These organizations and their dynamic leaders, together with the activist tradition in the Bay Area and a disability-friendly climate, made Berkeley an important center of the disability movement and a natural focus for Phase I of the project.
During Phase I, Regional Oral History Office interviewers recorded forty-six oral histories with Berkeley leaders, many of whom have also been figures on the national scene. The Bancroft Library collected personal papers of interviewees and others in the disability community and archival records of key disability organizations, such as the Center for Independent Living, the World Institute on Disability, the Disability Rights Education and Defense Fund and the Center for Accessible Technology.
Phase II of the Disability Rights and Independent Living Movement Project (2000-2004) expanded the oral history research and the collection of archival material to document the growth of the movement nationwide. The project again focused on those leaders whose activism began in the 1960s and 1970s. The forty-seven Phase II interviewees include founders and organizers of disability rights groups and early independent living centers in New York, Boston, Chicago, Texas, and California. Of these, many have also been national leaders in the movement and founders of national organizations. Many in this group, like the Berkeley interviewees, were among those who helped to conceptualize disability rights as a political movement and shaped the programs and philosophy of independent living. Others have been key figures in the development of disability rights law and policy, as organizers, strategists, and lobbyists behind the scenes.
A number of interviewees have held positions in state and federal government agencies and commissions, helping formulate government law and policy on transportation access, social security and health benefits, and personal assistance, education, and rehabilitation services. Several have worked to free disabled people from institutions, and others reflect on their own experiences living in institutions. Some interviewees were deeply involved with the parents' movement.
The international disability movement is represented by Yoshihiko Kawauchi, a leading proponent of universal design and disability rights in Japan; many American activists interviewed for the project also have connections to the international movement. Two interviewees are pioneering artists with disabilities, who discuss their careers as artists and the relationship of art and advocacy. Several have taught disability studies at colleges and universities, contributing to the concept of disability as a category of analysis analogous in many ways to class, race, gender, and sexual orientation.
A series list of project interviews follows the transcripts in each printed volume. The project Web site (http://bancroft.berkeley.edu/collections/drilm/) offers the researcher four points of access to the collection: by geographic location, by organizational affiliation, by research themes addressed, and by name of interviewees. There is no claim to completeness in the collection; further interviews are planned pending additional funding for the project.
Interview Themes and Topics
An overarching research goal for both phases of the Disability Rights and Independent Living Movement Project was to explore and document how a broad group of people with disabilities, in key cities across the country, initiated and built this social movement, and how it evolved nationally, within the context of the social and political fabric of the times. Lines of inquiry include social/economic/political backgrounds of interviewees and family attitudes toward disability; experiences with medical and rehabilitation professionals and with educational systems; identity issues and personal life experiences; involvement in civil rights or other social movements of the era; and developing consciousness of disability as a civil rights issue.
Interviews record how people with disabilities built effective organizations, with information about leadership, organizational structure and style, organizational turning points, stumbling blocks, achievements, and failures. Challenges particular to the disability community are addressed; for example, leaders of independent living centers point out the difficulties of providing much-needed services to clients and answering to government funding agencies for their service mandate, while still maintaining the essential advocacy roots of the independent living movement.
Interviews explore the building of national alliances and coalitions, investigating networking among groups from different locales and among groups accustomed to aligning on the basis of a single disability. Indeed, the issue of inclusiveness within the movement--the nature and meaning, and sometimes tenuousness, of cross-disability alliances and the inclusion of newly recognized disabilities--is a complex and significant theme in many project interviews, and offers an area for future oral history research.
Interviews document the range of efforts--from protest demonstrations, to legislative lobbying, to litigation in state and federal courts--to influence disability law and policy, to embed disability rights into the canon of civil rights, and to alter and expand the very definition of disability. Several interviews also reflect on a recent philosophical shift of some movement thinkers, who draw on a human rights framework and acknowledge the disability community's need for social supports along with equality of opportunity and civil rights.
Also examined by many narrators are race, gender, and sexual identity issues: the role of women (large) and minorities (limited) in the movement; the development of programs for women and girls with disabilities; questions of sexuality and disability; and the disability movement's relationship over the years with the women's, gay and lesbian, and African-American civil rights movements. The involvement of able-bodied advocates, including parents of children with disabilities, is examined by many interviewees, both disabled and able-bodied, with telling accounts of often awkward and sometimes painful struggle over their place in the movement. (For instance, one organization toyed with the idea of granting able-bodied members only three-fifths of a vote.)
Another important theme running through these interviews is the question of equal access. This includes the impact of technological advances--from motorized wheelchairs in the early days of the movement to adaptive computer technologies more recently, all of which have profoundly extended opportunities for people with disabilities. And it includes the campaigns, legislation, and lobbying--on campuses, in communities, and in Congress--for removal of architectural barriers to people with disabilities, for access to public transportation, and for access to personal assistance services, all essential requirements for independent living.
Many interviewees reflect on the process of developing a disability identity and a sense of belonging to a disability community. Several explore the concept of disability culture and its expression in the arts and in media, and theoretical explorations of disability by scholars and educators. Interviewees who have pioneered the fields of disability scholarship, arts, and ethics point out the contributions of disability studies to the broader society in fostering new and more complex ways of thinking about the body, about normality, about crucial ethical issues relating to abortion, euthanasia, and physician-assisted suicide; and in contributing a unique disability perspective to scholarship in history, literature, and cultural studies.
Project Staff and Advisors
Since its inception the project has been collaborative, with staff members and advisors drawn from the disability community, from academia, and from the Bancroft Library and its Regional Oral History Office. The national advisory board for Phase II includes disability rights leaders Fred Fay, from Boston, and Lex Frieden, from Houston; scholars Frederick Collignon and Sue Schweik from UC Berkeley, Paul Longmore, historian from San Francisco State University, and Karen Hirsch, disability scholar from St. Louis.
Ann Lage directed the project for the Regional Oral History Office, providing years of experience in oral history and leadership for the interviewing team. Interviewers for the project had a unique set of qualifications, combining historical perspective, training and experience in oral history methods, personal experience with disability, and, frequently, activism and participation in disability organizations. Oral history interviews were conducted by Sharon Bonney, former director of the Disabled Students' Program at UC Berkeley and former assistant director of the World Institute on Disability; Mary Lou Breslin, cofounder and former president of the Disability Rights Education and Defense Fund, policy consultant and lecturer on disability civil rights topics, and Henry Betts Award winner; Kathy Cowan, librarian for a public interest law firm; Esther Ehrlich, oral history interviewer and editor in the areas of disability arts and community history (who also took on myriad project management responsibilities); and Denise Sherer Jacobson, writer and educator on disability issues (The Question of David, A Disabled Mother's Journey through Adoption, Family, and Life, 1999). David Landes, former coordinator of student affairs for the Computer Technologies Program in Berkeley, took a less active role in Phase II when he was appointed to a full-time faculty position in economics. Susan O'Hara, former director of the Disabled Students' Program at UC Berkeley and the initiator of the original idea for this project, again served as consulting historian, occasional interviewer, and convenor of monthly project meetings.
Conducting interviews in Massachusetts and Washington DC was Fred Pelka, a writer specializing in disability rights politics and history, author of The ABC-CLIO Companion to the Disability Rights Movement, and a recipient of a 2004 Guggenheim Fellowship for his proposed book, "An Oral History of the Disability Rights Movement." Harilyn Rousso, educator and consultant on issues of women and girls with disabilities, moved from project interviewee to interviewer, conducting one New York oral history and then organizing and moderating a videotaped group discussion with four New York advocates. The Regional Oral History Office production staff, coordinated by Megan Andres, transcribed interviews and carried out other production tasks.
Bancroft Library project personnel in the Technical Services unit collected, arranged, and catalogued personal papers and organizational records and prepared detailed finding aids. They included Jane Rosario, supervising archivist, and project archivists Susan Storch and Lori Hines, all under the supervision of David DeLorenzo, head of Bancroft Technical Services. The staff of the Berkeley Library's Digital Publishing Group, headed by Lynne Grigsby-Standfill, prepared the oral histories and other texts, photographs, and finding aids for digital archiving in the Online Archive of California. Brooke Dykman designed the Disability Rights and Independent Living Movement Web site. Theresa Salazar as curator of the Bancroft Collection, provided curatorial oversight for the project.
Oral History and the Oral History Process
Oral history provides unique and irreplaceable sources for historical study. It preserves the reflections and perspectives of those who have participated in historical events, documenting with firsthand accounts how events happened, how decisions were made, and the behind-the-scenes interplay that underlies the public face of an organization or social movement. Beyond documenting what happened and how, the words of participants reveal the personal and social contexts and the institutional and political constraints which profoundly shape events but may not be apparent in the written record. Most significantly for this project, oral histories offer an opportunity to elicit reflections on often elusive matters of identity, changes in perception and consciousness, and the personal experience of living with a disability. Finally, they provide a record of how people remember and understand their past, often a indication of personal values and cultural meanings.
The DRILM project team, primarily based in Berkeley, all contributed to the original design of the project and assisted in developing interview protocols. Bay Area interviewers were joined by Fred Pelka from Massachusetts for a two-day orientation session in December 2000 and by telephone during regular monthly meetings, held to plan and evaluate interviews and review progress. Interviewers assigned to document the movement in a particular location conducted research to choose potential interviewees and interview topics. Once narrators were selected and arrangements made, they prepared a preliminary outline before each interview session, based on interview protocols, background research in relevant papers, consultation with the interviewee's colleagues, and mutual planning with the interviewee. The length of each oral history varied according to the length and complexity of the narrator's involvement in the movement, but also was dictated by scheduling and availability limitations.
Tapes were transcribed verbatim and lightly edited for accuracy of transcription and clarity. During their review of the transcripts, interviewees were asked to clarify unclear passages and to give additional information when needed, but to preserve the transcript as much as possible as a faithful record of the interview session. The final stage added subject headings, a table of contents, and an index (for the print versions). Shorter transcripts were bound with related interviews into volumes; longer transcripts constitute individual memoirs. Interviewees were offered the opportunity to seal sensitive portions of their transcripts, or omit them from the Internet versions.
There are nearly one hundred oral histories in the Disability Rights and Independent Living Movement series. Nearly all of them are available via the Internet in the Online Archive of California (http://www.oac.cdlib.org/texts/); they also can be accessed through the project Web site at http://bancroft.berkeley.edu/collections/drilm/. Print volumes can be read in the Bancroft Library and at the University of California, Los Angeles, Department of Special Collections. They are made available to other libraries and to organizations and individuals for cost of printing and binding. Many of the oral histories are supplemented by a videotaped interview session. Video and audiotapes are available at the Bancroft Library.
The Regional Oral History Office was established in 1954 to augment through tape-recorded memoirs the Library's materials on the history of California and the West. The office is under the direction of Richard Cándida Smith and the administrative direction of Charles B. Faulhaber, James D. Hart Director of The Bancroft Library, University of California, Berkeley. The catalogues of the Regional Oral History Office and many oral histories on line can be accessed at http://bancroft.berkeley.edu/ROHO/.
The Bancroft Library's Disability Rights and Independent Living Movement Project, of which these oral histories are a part, was funded by field-initiated research grants in 1996 and 2000 from the National Institute on Disability and Rehabilitation Research [NIDRR], Office of Special Education and Rehabilitative Services, U.S. Department of Education. Any of the views expressed in the oral history interviews or accompanying materials are not endorsed by the sponsoring agency.
Special thanks are due to other donors to this effort over the years: Dr. Henry Bruyn, June A. Cheit, Claire Louise Englander, Raymond Lifchez, Judith Stronach, the Prytanean Society, and the Sol Waxman and Tina P. Waxman Family Foundation.
Regional Oral History Office
The Bancroft Library
University of California
Berkeley
Disability Rights and Independent Living Movement Oral History ProjectLarry AllisonCamp Jened Administrator, Deputy Director at New York City Mayor's Office for People with Disabilities, 1973-1991Interviews conducted by
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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 Larry Allison, dated July 14, 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:
Larry Allison, Camp Jened Administrator, Deputy Director at New York City Mayor's Office for People with Disabilities, 1973-1991, 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 I, Regional Oral History Office, The Bancroft Library, University of California, Berkeley, 2004.
Tape Guide
- Interview: July 14, 2001
Interview History--Larry Allison
Larry Allison was invited to participate in the project because of his role as administrator at Camp Jened and his perspective regarding the significance of the camp in the development of several campers who became disability rights leaders and activists during the late 1960s and early 1970s. He later served as deputy director to Eunice Fiorito, the first director of New York City's Mayor's Office for the Handicapped (since renamed the Mayor's Office for People with Disabilities).
The three-hour interview session took place in midtown Manhattan in the sitting area of the interviewer's hotel room on July 14, 2001. The interviewer and interviewee originally met over thirty-five years ago at Camp Jened, where the interviewer had spent several summers as a camper and, later, as a counselor under the supervision of Mr. Allison. Both individuals had not seen each other in almost twenty-five years. The most striking change in Mr. Allison's appearance was his snow-white beard and mane. Still intact, as evident in the interview, was his sharp, wry sense of humor. At times, he would talk into the tape recorder as if assuming that the people he was speaking about would one day listen to the interview. On other occasions, he would punctuate his remarks by thumping on the desk, the sounds of which are recorded on the audio tape.
Highlights of the interview include Mr. Allison's recollections of an adolescent Judy Heumann, one of the foremost leaders of the disability rights and independent living movement, and his former boss Eunice Fiorito, who went on to become president of the American Coalition of Citizens with Disabilities. Also of significance is Larry's recounting of the New York City political climate throughout the 1970s, 1980s, and early 1990s, which became fertile breeding ground for the rise and development of organizations instrumental in disability activism, most noteworthy, Disabled in Action, Inc., and indviduals who played key roles in the local and national movement for disability rights and independent living. Several of these early leaders are no longer living.
The transcript was lightly edited by the interviewer and reviewed for accuracy and clarification by the interviewee. The tape recorder did not record the last few minutes of the interview and Mr. Allison was invited to add a briefly written closing remark.
A videotape of a group interview with Mr. Allison and several other New York activists supplements this interview. The vidoetape is available for viewing at the Bancroft Libary, at the University of California, Berkeley.
Interviewer/Editor
Oakland, California
I. Personal Background and the Camp Jened Years, 1965-1973
Life in Corning, New York, 1943-1963
Larry, let's start with some family background, like where you were born and what kind of neighborhood you grew up in.
Allison
Okay, I was born in Corning, New York, which is upstate New York. It's between Binghamton and--actually, it's between Elmira and Jamestown. It's just past Elmira, New York. Corning was and still is--but at the time I was growing up, they actually made glass products there. They do more research there now. In 1943, September 11th. My mother used to tell me that I was born at nine o'clock at night, during a blackout, because they used to have--this was during the war, and so the civilian population throughout the country would do blackouts. I don't know whether--there was fear that the Germans or the Japanese would somehow bomb the country.
Jacobson
What did your parents do?
Allison
My father was a glass worker. He had come over with his two brothers and my grandmother in 1914, and his aunt. And my grandfather, Gustav had come over in 1912, and they were from a region of Sweden called--well, the town was Idesjö and the region was Smallanol and it's a region that is basically depopulated now, but they made glass there. So Corning Glass would go to different parts of Europe, and they would recruit trained glass workers and bring them over. This is how my father's side of the family got here.
My mother worked at a number of jobs. She worked at a time when women didn't work. She worked in an insurance company. She was a cashier at the--there were three movie houses in Corning, and she worked, actually worked at one time or another in all of them as the ticket seller. In fact, all the women in my family, my aunts and everything,
I had two brothers, who were younger brothers, who were twins, fraternal twins. We all went to grammar school and high school. I graduated high school in 1961, from Corning Free Academy, which doesn't exist anymore.
Jacobson
How old when you when your brothers were born?
Allison
I was three years old? Yes, they are three years younger. I think they frankly look a lot older than I do, but that's--[laughter]--but that's just my opinion.
Jacobson
You said you graduated from high school--
Allison
In 1961, Corning Free Academy, which as I said, is no longer a high school. And I went to Corning Community College for two years. I was president of the student body my second year, and received what they called an associate arts, an AA degree. I transferred to New York University in 1963, sometime in the fall of 1963. I went from this very small school to the largest private--I think it was larger than--well, Berkeley is part of the University of California system, but this was the largest private university, I think at the time in the world. I went from the smallest to the largest.
Jacobson
How small was it?
Allison
Well, it was a community college. It was two years. If there were 250 people there, that was a lot. And they were basically people from the area: Elmira, Corning, surrounding counties. We got the most exotic people. I think we had--I had one friend from Westchester County who somehow discovered this school, and three guys from Rochester, which is in Monroe County, which is ninety miles away, but they're essentially from Chemung County and Steuben County, Corning, Elmira.
From aspiring actor to pre-law at New York University, 1963
JacobsonWhat made you go to NYU?
Allison
I wanted to escape. From the time I was small, I think. My mother working in a movie theater sort of promoted this thing. I was very interested in acting. I actually wanted to come to New York to be an actor. I got to see every movie ever made, not because my mother worked in the theater. I could go and I could see--I think I saw "On the Waterfront," like, five times. That was my plan. My plan was to come to New York. NYU was sort of like a convenient way to do that. But I wanted to become an actor.
Just to fast forward, I wasn't willing to make the sacrifice, after all is said and done. But what I have is a lifelong passion for the theater, for film, for acting, which my kids share. But that was my plan. And I didn't major in drama when I went to NYU. I majored in political science and history. I had a dual major. Pre-law. So there was
I even took the exam for the foreign service when I was at NYU and could have pursued that. They wanted me to take the exam a second time. That could have been a career path. You know, I really wanted acting. I wasn't willing to make the sacrifice, the tremendous sacrifice. If you're going to do that, you have to be able to take a lot of humiliation, a lot of rejection; you have to be very tough, and you have to live with the thought that you may never ever see your name in lights.
It was also during the war.
Vietnam era, working with people with disabilities at Camp Oakhurst, 1964
JacobsonWhat war?
Allison
The War of 1812 [laughter]; you know how old I am. The start of the Vietnam War. They were drafting people right and left. I had a student deferment, but I had been called for my physical. Actually, at one point in time, when I was at (Camp) Jened, I was called before my draft board. But that was later. That was after I was out of college and I was teaching. But I remember going to Whitehall Street for my physical, which was sort of like a rite of passage for young men during that era. You would stand around in your underwear, in lines with your possessions in a little bag, and you would go from--there's, like, twelve or thirteen or fourteen, fifteen stations, each representing a body part or a functional part.
I had the dubious distinction--after each one, they say, "If there's anything else you want us to know, step aside." Well, I stepped aside fourteen times because I think I was slightly--what's the word I'm looking for? It'll come to me. But by the time I got to the end, they were looking at me and saying, "I don't think this kid wants to join the armed services."
Jacobson
Do you remember what year that was?
Allison
I think it was--I'll tell you. I can put it in the context that Alan Winters was--or was it Jack Birnbaum running the camp? It may have been when Jack Birnbaum was running the camp, because I was working in the office part time and going to school, working the Camp Jened office, the foundation office. Their offices were at 32 Broadway, and Whitehall Street was literally down the block. So I remember going back to the office after this physical, totally traumatized, convinced I was on the next transport out and I would be in-country very quickly.
The end of the story, though. The doctor at the end--he says, "You know, son, you think you have a lot of things wrong with you." I said, "Well, yes. I have a problem here, I have a problem there." And he said, "Where are you from?" And I said, "Corning, New York." He said, "Do you know Dr. Thomas McNamara?" I said, "That's the guy who delivered me." He says, "Well, we served in World War I together." And he says, "Don't
But the reason I bring that up is that the war changed a lot of plans that a lot of people had. I don't know if it was conscious or unconscious and everything. Sometimes I don't even know if it's worth it to dwell on it, but it sort of dovetailed with how I got into the disability field, which was when I came to New York, I needed a summer job. I applied for a camp position in Oakhurst, New Jersey, at Camp Oakhurst, run by Jack Birnbaum, one of the most important people in my life, and that was my first contact, conscious contact with people with disabilities.
I came late, so I had no orientation. He said, "Listen, I can't give you an orientation. You're here. Orientation is over. I'm just going to send you down to New York, and you're going to meet the bus and you'll ride up with the campers." I said, "Fine. That's pretty good." I'm trying to remember whether it was 23rd Street off of Seventh Avenue. It was--
Jacobson
The Federation of the Handicapped.
Allison
Yes, yes, yes, that's exactly right. I rode down on the empty bus there, and the first disabled person I ever saw in a conscious, professional kind of way was this little kid. He was fourteen, but he was very small for his age. Who came running out of the facility and started to climb the sign pole. So of course my old--I said, "Okay, this is gonna be cool."
I had my job. I was the swing counselor, between two bunks of boys. I looked at it--whenever anybody was on his day off, I filled in. And I think there were, like--I don't know--thirteen, fourteen kids, boys to a bunk. So I just said, I don't have fourteen kids to tuck in; I have twenty-eight. It was a great--it was in Oakhurst, New Jersey, close to Asbury Park, a beautiful part of New Jersey. On nights off we would go down to Asbury Park, and smoked my first marijuana at that camp. It was 1964. It was a wonderful, wonderful experience.
When Jack left and went to Camp Jened, he called me the next year, and he said, "Look, I'd like you to come. I'd like you to be the unit head." And that's how I ended up at Jened. That was the start of--
Jacobson
If I remember at Oakhurst, because I went there for one summer in'64--
Allison
Alan Kee was there?
Jacobson
Yes. And Frieda Tankus was there.
Allison
That's right.
Jacobson
Frieda was in my cabin.
Allison
And Marvin Raps, who may still be running the place, was a counselor.
I remember the name. But that was my first and last year. Oakhurst, if I remember, took campers only up to fourteen years old. They had a few sessions during the summer.
Allison
They had an adult session at the end.
Jacobson
The sessions were only three weeks long--
Allison
Yes.
Jacobson
You could go there until you were fourteen, and then you could go back when you were eighteen, but there was no program for anyone in between those ages.
Allison
Yes, right.
Jacobson
Do you remember questioning why that was? What was the philosophy behind that?
Allison
Well, like I said, this was my first year, and I was new to the whole thing. The philosophy--well, it's a very structured camp, and we did reports and we did evaluations. I remember things were designed to make sure that there was relatively little unstructured time. I mean, you could have unstructured time, but it was scheduled unstructured time. It didn't ever happen sort of accidentally.
Jacobson
Yes.
Allison
One of the things that I recall from that time happened during the adult session, was going into Asbury Park, I believe, with an adult camper who wanted to go to a bar and have a drink. The guy was, like, thirty years old, or even older. And being refused when we went into the bar, I and another counselor--against all the rules--and being refused by the bartender. The bartender not refusing the guy to his face, refusing us because of him. We finally found a bar that served him.
I recall--and I may have gotten this wrong, but he had I believe--I don't remember what his disability was specifically, but I remember when he drank he spoke a lot more clearly, and he was calmer. I went back and said, "You know, he's never going to be a pain in the ass again. This is all you have to do." But it struck me. It struck me that here was an adult man who was way past the age of--who was being turned down for no good reasons but the fact that he was different or looked different, was in a wheelchair, did not speak clearly. It really made a lasting impression on me.
Camp Jened: choices in the era of experimentation
JacobsonWhat about at Camp Jened?
Allison
So when I got to Jened and I was with Jack and then Alan Winters was there, Jened was an opportunity to try to do some different kinds of things. As you remember, that era was an era of a lot of experimentation. I mean, we were moving into the flower--you know, the hippie era, the flower power era, antiwar, love, peace--and the camp really
One of the things--remember, Jened served simultaneously adults, teenagers, and smaller kids, and I think we stopped with the smaller kids and it was teenagers and adults at some point later on, but initially--and they went for four weeks or eight weeks. So it was an opportunity for particularly the teenagers, and I was the head of the teen unit, to experience, to do things that teenagers were doing, albeit in a cloistered kind of way but at least there was an opportunity, including dating. You know, having--we had a lot of dances, I remember, but having the ability to lead--to the extent, again, in a cloistered kind of situation, and I hate to use the word--but quote-unquote "normal" kind of teenage existence, experiencing those things that nondisabled teenagers took as a matter of--you know.
Jacobson
Was that because of Jack doing that?
Allison
It was a kind of evolutionary kind of thing. I think Jack was still kind of from the old school in terms of the program and schedules and stuff like that, but I do believe that Jened loosened him up a little bit. But the program evolved. It really evolved over--Alan was not a social worker; Alan came from a totally different kind of perspective. There was sort of not a professional kind of discipline he brought to it. He just had worked at Oakhurst for a very long time, and sort of knew how to do this, knew how to--
Alan was very comfortable and was always much more comfortable in dealing with the physical plant. I was the program director under him, so I was, like, the number two. He was more concerned with the physical plant: making sure that the water was on, the electricity was on, that the bunks were kept in repair. You know, overseeing---I think we built the infirmary, we built--I'm trying to remember--I don't remember if the swimming pool was built when he was there or I was there, but--
Jacobson
Wasn't the swimming pool installed in 1969, after the fire?
Allison
Yes. That's the year camp didn't open.
Jacobson
Okay.
Allison
Yes.
Jacobson
Was Jack a social worker?
Allison
Yes, Jack was a social worker. He was trained in the discipline, and he brought that kind of perspective to camping, to camping for people with disabilities.
Jacobson
Tell me about the Jened Foundation?
Allison
The Jened Foundation was comprised of basically parents, and they had a couple of people on the board who were not parents. There was a guy named William Miller, who was an attorney, who raised a lot of money. I'm trying to remember. There was one particular patron who also gave a lot of money to NYU, and I'm trying to remember--his bust was in the dining hall--trying to remember who that was. The name is escaping
So this was not a high-powered kind of board of directors with people who are socially prominent and very wealthy. Bernard Abrashkin, who was the president, had a daughter, Ellie [Eleanor] Abrashkin, who was a camper, and Barney was the general counsel for the non-uniformed sanitation workers. He recruited some friends. I remember there was a guy named Jack Slatkin, who was the treasurer. I don't think Jack had children there. Bill Miller, who was a guy who raised a lot of money. Ida Levine, who was also on the board of directors for United Cerebral Palsy, New York State, New York City--I think Ida was--Ida on our board. I'm drawing blanks after that, but they ran the bingo game. What we took in from fees and whatever we raised from foundations really was--that was it. That was the budget.
Money was a constant struggle. It was not a wealthy organization by any stretch of the imagination. I think the counselors got paid $250 for the summer. I think that was the whole thing. That was a lot of money in those days. "Do you want it weekly, or do you want it at the end?" I just remember struggling. The money, the money, the money, the money.
Jacobson
Where did you get staff?
Allison
We recruited from college kids essentially. What we would try to do--and high school kids, who started out as waiters and waitresses. We had a lot of recidivism. We would have people that would come back, and sometimes they would come back in the same capacity, and sometimes they would come back in a different capacity. Joan Lazar started as a counselor; came back as the chief nurse.
There was a good reason for it. It was a wonderful--I can't think of anybody who had a bad experience up there. If there were, they kept it from me. And all of us felt like it was a very special time and we could not wait for the winter to be over, for the summer to begin so we could do it again. There was a sense of purpose. There was a sense of freedom up there. It really was different from anything I'd ever known, ever done in my life, and I have never done since. We made friends. I mean, this relationship between camper and counselor blurred, and there were friendships that developed. People could see each other as human beings.
Toward the end, that was the whole purpose. The whole purpose was to get rid of the labels and to look at people as human beings because otherwise you can't possibly understand if you were going into the so-called helping professions--you couldn't possibly help this person if you were relating to him or her through the confines of a label, that--you know, you were doomed to failure.
What happened is that the whole relationship--it broke down into much more human kind of friendships and so on and so forth, and that led directly to hiring disabled people as counselors.
Jacobson
Okay. Let me turn the tape over.
Okay. I've talked that much. God, I am a long-winded--
Were you aware of other programs for the handicapped at other camps, and what were the differences?
Allison
I was vaguely aware. I had some relationships with like Sue Samuels and people like that, and I think that the difference was-largely because it was the teen camp and there was adult camp--I think the difference was we were much more, initially, I guess you'd call it experimental in terms of what was it we were trying to accomplish. We saw it as--first of all, adults were coming up there to have a vacation. I mean, adults don't need--at that time--okay, you had your resorts, and you do at these resorts--you have these structured activities during the day. And that was a vacation.
But the option was you could do it or you--yes, you could learn ballroom dancing and take calisthenics and learn yoga, or you could just go for a walk or go swimming. These are adults, largely people--many of them who lived in hospitals, many of them who were literally confined to their homes, did not get out, did not participate in the general life in any significant way. So you wanted to offer them activities and everything so they would have a good time, but you also wanted to respect the fact that they were adults and this was their vacation. While families would talk about "you don't know what it's like to have a disabled child" and "he's a disabled--" whatever, you know--so it was kind of a vacation in their minds for them when this person would go away. But it was also a vacation for the person--it was a two-way street.
Jacobson
Was that just a sign of the times, or was that something that just came with the territory? And then with teen camp there was just a sense of, like, of wanting--I'm not putting it very eloquently--but wanting to provide a kind of environment where teenagers could be teenagers, without having to deal with all of the stereotypes and the labels and stuff.
Allison
It was a combination. I think it was something that the times--again, to put it in the context of people questioning the established order, how things were done and why they were done, so that certainly had a role in it; and I think that the part in terms of people becoming close to one another, the rules of counselor and camper were blurring, and people simply being friends led inevitably to--you know, "We got to re-think this," and the need for the experience to be as ultimately--to give people enough freedom so the experience is what they make it, not what you try to push down their throats, but the experience is what they make it. They have the choice. They make the choice. And treat people with--ultimately with respect so that they can make that choice. Then they have the right to make that choice.
I remember very, very distinctly--and this is in adult camp--a couple who wanted to have sex, and the counselor came to me and said, "So-and-so and So-and-so want to have sex, and they can't do it themselves; they want me to help them." I said, "So why are you telling me? It's none of my business. They're adults." Now, I said that, and I meant that, and in the back of my head, as the director of the camp, I thought, "Oh, my God, I'm gonna get sued on this. I don't want the lawyers to even know about this."
But it was--I mean, it was kind of like, "Man, you talk the talk; you better walk the walk." This was one of these moments of truth. You know, here are two adults. They are both severely physically disabled in terms of their range of motion, their ability, they were in love and ultimately got married and they wanted to have sex but needed the help of a surrogate. And so, the counselor was coming to me for instructions. I just--you know, I--it's none of my business.
I think with anybody under eighteen--because we were acting in loco parentis--that would have been a different--I would have not said that. That would have been a different situation. But we also had to live with if you're going to let teenagers be teenagers, then give them a certain degree of freedom. It wasn't rampant freedom. I mean, everybody had to be in bed at a certain hour, you know.
Jacobson
Yes, I know. I remember.
Allison
So the rest of us could go out to play. But there was opportunity. There was opportunity if people wanted to be creative. And that was part of--you had to live with that. I mean, you know, teenagers are going to be teenagers, and this is something that it goes with the territory.
Jacobson
Jened was one of the few camps that was open to teenagers.
Allison
Yes.
Jacobson
Oakhurst cut them off at fourteen. Camp Carolla's cut off age was fourteen for boys and sixteen for girls.
Allison
Literally, what did kids do? What did severely disabled kids do in the summertime? I have no idea what they did.
Recruitment far and wide
JacobsonThere were very few places those kids could go. For most non-disabled kids at that age there were C.I.T. [counselor-in-training] positions or working at McDonald's, but disabled kids didn't have those opportunities.
Tell me about the campers. Where did they come from?
Allison
They came from all over. Remember Alan Caplan? He came from Toronto or Montreal Basically it was the eastern seaboard. The majority I think were from New York City and the outlying boundaries, but we had campers from Canada, Ohio.
There weren't many options, and there was no Internet back then, but there were journals that people subscribed to, directories that had camp listings. I remember the Community Council of Greater New York used to put out a Red Book every year with all of the social services agencies listed and subdivided under "Recreation, Camping" and so on and so forth. So people had ways. And then there was word of mouth. Parents
Today, with the Internet, it would be a relatively easy thing. You set up a web site, you're deluged with people. And people were repeaters. Just like the counselors were repeaters, the campers were repeaters. We could expect a certain number, a certain percentage--it was a very high percentage of people coming back every year.
Jacobson
How many campers were there at one time?
Allison
Oh, God. I'm trying to think. There were bunks of boys, bunks of girls, and there were, like, ten or eleven or twelve in a bunk or something?
Jacobson
Less.
Allison
Less? Nine, ten?
Jacobson
Eight or nine.
Allison
So I think there were maybe altogether there were maybe 120 campers. No, no, that's too much. That's too much. No, forty, forty, forty--about 120, yes.
Jacobson
Did some pay?
Allison
Yes, most paid. Most paid. We got scholarships for some. There was some money--money--I'm trying to remember--we had a lot of kids from Coler. Nellie Franco, remember?
Jacobson
Bird S. Coler?
Allison
Yes. There was money through the hospitals for the camping.
Jacobson
And Bird S. Coler was a hospital.
Allison
On what's now called Roosevelt Island. It used to be called Welfare Island. We had adults from Goldwater and kids from Coler. They were long-term care rehabilitation hospitals, Coler basically being for children and Goldwater for adults.
Recollections of Judy Heumann: a seminal figure
JacobsonOkay. I want to talk about the campers. They were many campers at Jened who went on to become activists and leaders in the disability rights' movement. One of them was Judy Heumann. Do you remember what she was like in those days?
Allison
I gave Judy her first job.
Jacobson
Tell me, what were your impressions of her?
Judy [Heumann] was an extraordinary human being, and still is an extraordinary human being. Judy was in a lot of ways one of those people who come along at a moment in time and actually cause things to change, because she simply refuses to accept the status quo. Her battle with the Board of Ed. [Education] to become a teacher, and her subsequent things that she's done--
Jacobson
Do you remember her as a kid?
Allison
Yes. Judy [speaking into tape recorder], you were a total pain in the ass, but I loved you anyway.
Jacobson
I thought you would say that. Why was she?
Allison
Because Judy demanded--and she was right, and what happened if you were at all logical, which I sometimes was, in relatively rational moments that I would have--you could not argue with what she was asking for. She was merely asking to be treated like you would treat anybody else. She was asking for equality; she was asking for the oldest thing on earth: Give me respect. Give me equal opportunity so that I can live the kind of life--you know, be independent.
She was a seminal figure. There were a number, but Judy is right there at the top, I think the top five of really seminal figures in terms of the disability rights movement and the independent living movement, which came out--they go hand in glove. No, she was just a feisty, very bright, very verbal kid.
Jacobson
What kind of things do you remember--issues that came up when she was a teenager?
Allison
I don't remember. I'm trying to think specifically, and I don't--I can't think of specific things. I'll just give you impressions. Judy was just somebody you could not ignore. She was, even as a child, a very interesting, intelligent, smart person, very attractive from that standpoint. You didn't want to ignore her, because she was also fun, you know?
Jacobson
How old was she when you first met her?
Allison
I don't remember. She was a teenager.
Shattering stereotypes; discussion of disability hierarchy
JacobsonOne thing I remember about the camps I went to when I was young, not so much Oakhurst, but at Carolla and its Saturday rec program, the Carollians, there was this hierarchy of disability. In other words, the more disabled you were, the more unacceptable you were. Do you know what I'm talking about?
Allison
Yes. You know, it's interesting. You find similar things with--now I guess it's called people of color--but you find in many cultures that it's still like the lighter-skinned people where you have basically a brown people but on one side of the scale they're
There would be a lot of discussions about that: the post-polios versus the people with cerebral palsy, and the ambulatory versus the non-ambulatory. It was broken down--it really--and there were some people that were sort of difficult to fit into--and that was largely, I thought, a self-imposed kind of thing, and a totally natural human thing. What we human beings do is whenever we get a chance and we have a group is that we start classifying everybody. It seems to be--it doesn't matter what culture you come from, what gender you are, it's what we tend to do.
You look at the program "Survivor" and you'll see that very dramatically. There's got to be, like a food chain, and somebody's got to be at the top of the food chain, and somebody's got to be at the bottom of the food chain.
Jacobson
Now, I remember it being less prevalent at Camp Jened. That somehow the lines blurred so that the hierarchy wasn't as defined as it was elsewhere. Do you have any thoughts on why that was?
Allison
I think that that was probably, then, whatever we were trying to do, we were doing it right because that was happening. Because by sort of taking away, loosening up--you know, being not so rigid--and trying to develop an environment where people could not just be experiencing the classical kind of camping curriculum and then by hiring right people, I think you break down a lot of stereotypes. Again, these stereotypes, this pecking order, this food chain, however you want to characterize it, was largely self-created. Not totally, but largely.
Jacobson
What do you mean self-created?
Allison
I think you put people in a group and they will classify themselves, and they will--look, there will be people at the low end and people at the high end, and I think that all people do this, and I think that what you saw--I mean, what we tried to do was to give people an opportunity--and I don't know if it was conscious, but--was to get out of that. You know, you don't have to look at--you're in an environment with people your own age, and you don't have to classify. Things were going on between the counselors and the campers; there were things going on between the campers and the campers. Those dynamics were set to, like, get beyond the stereotypes. I mean, the non-disabled people had stereotypes in their minds about disabled people when they came there. Hopefully after they had spent a summer there, those stereotypes were shattered, were irrevocably changed.
The same thing had to be happening between campers, who had different kinds of disabilities and there was this tendency to put the more verbal, the post-polios, on one kind of level and then proceed downward as people got more severely disabled, and I say that it's largely self-imposed, not totally self-imposed, because the society does that, too. But kids with disabilities--what we're trying to do is give them the opportunity to reject that. "I won't buy into that. That's a lot of garbage. Don't buy into that."
Jacobson
Where you aware that was going on?
Yes. After about a couple of years into--yes, I was aware. We talked--we used to talk about this--the staff--we used to talk about it in terms of--and there were--I mean, I think that the counselor part came into play more for really being aware of kids that were up there--adults who were, for whatever reason, being left out. There still was room while this other stuff--but there still was room for the traditional kind of camp experience to go on, because some people wanted that; some people needed that. Some people needed that as a vehicle to sort of break out. Or they came for that. That's what they came for.
But the trick was--what we tried to do was even though the camp program was our basic kind of product--we also want to give the opportunity to say, "The hell with that. I want to have a different kind of experience," and be able to have that. And that was a byproduct, again, of the times, of the great social--not only social unrest but social experimentation, and people rejecting labels, people looking at black people and saying, "I refuse to continue to buy into the fact that society has said you're inferior to me because of the color of your skin" and women--the feminist movement--"We refuse to be second-class citizens anymore." In this instance, it was people with disabilities saying--
And even the nomenclature changed. I mean, it used to be--it went from crippled kids to handicapped kids to kids with disabilities. The nomenclature got--you know--but emphasizing getting back to the people. This may sound utopian, but I really--I still, at my advanced age, I still believe it. I still believe that from an evolutionary standpoint, for social evolution, that you can get to the point where these things simply don't matter anymore, where they're incidental.
"You know so-and-so? She's the"--just like you would describe somebody--she's the one with the red hair--"Oh, yeah, I know who she is," kind of thing. It's not a point of classification, it's a point of identification. So you're always dealing with the human being. You're not dealing with the stereotype. You're not dealing with--yes, I mean, you know better than I do. You grew up where somebody would be wheeling you, and someone would be asking them if you were hungry, did you want something. You know, that crap you had to put up with.
Things could change. I think Jened played a role in fostering that idea. And I think--you know, the large part of it, Denise, is the problem did not exist with people with disabilities; the problem existed with people that didn't have disabilities. It was our problem that you guys were having to put up with. So it was important for us to change.
The reason it was such a great experience for the counselors was that it made everyone confront the stereotypes in their lives and learn to live beyond them.
Jacobson
Let me change the tape.
As I was saying, essentially a lot of us saw it as a problem that the nondisabled majority had which needed to be--and I honestly believe the racism and all the rest of this stuff, and I don't want to get tedious, politically correct because I really am so tired of political correctness I could vomit, but--it was our problem, and insofar as you let us get
Jacobson
Yes.
Allison
And these are very important people who contributed critical things at a critical moment and really changed the face of the world. You look at things in a historic perspective, and there has been tremendous, tremendous change, and the biggest change has been--I believe it's not only the physical environment but also in the acceptance. I think we have a ways to go yet, but I think it's dramatically different than 1963, when I started in disability.
The fact there's even an oral history project on this alone is I think symbolic of the fact that something historic has happened.
The work-camp experience: proof of employability
JacobsonBefore we move on, and I have to admit that I could talk about Camp Jened all day, and it's interesting that when people I know who've gone to Jened get together and start talking about it, their eyes light up and they get so excited--whether they had gone as campers, counselors, staff. It's clear that their whole experience at Jened has meant a lot to them.
I remember, I believe in 1968 either Alan Winters or you came up with the idea of work-camp. How did that come about? And tell me a little about what that was?
Allison
I'm trying to think. There were some campers involved, and our friend who has passed away--
Jacobson
Frieda?
Allison
No--we were talking about the glass eye in his hamburger.
Jacobson
Alec?
Allison
Yes. Alec Levy may well have been one of the people. And there was another. He worked for the City of New York for a long time and still may be, Howard Silverman. There were people that--you know, the idea was thrown out. Somebody--it may have been Alec, it may have been Howard--that one of the things that we could do is allow campers to run a little business, and so we did that. And it just got into, like, a work-camp kind of thing.
See, work-camp in traditional camping is not a novel kind of thing.
Jacobson
No?
No. It's really kind of--I mean, at least now it's not, from what I can gather. My daughter, my younger daughter is at camp right now.
Jacobson
They called it CIT.
Allison
Yes, counselor-in-training.
Jacobson
Yes.
Allison
Yes. And that was--it's kind of inevitable--and then there was this other camp store kind of piece of it. It's just one thing just sort of leads to another. It just sort of progresses. It's kind of logical. Once you let the logic take over, it just sort of flows by itself.
Jacobson
What was the idea of it?
Allison
To give kids a work experience, you know? That's part of the real world. Work is fundamental to independence.
Jacobson
And--
Allison
And that it's another thing to say that disability historically has been--was at that time defined as inability to work, disabled, unable to work. Your government programs at that point in time were based on that premise: couldn't work, could no longer work, what have you. Had nothing to do with rehabilitation or anything. And there were obviously people--I mean, who is to say when your mind is perfectly functioning, when you're smarter than I am, you can't work? I mean, that's crazy.
We may have been ahead of the curve with regards to technology--I mean, if we'd had the technology back then that we have now, it would be almost like--you know, totally illogical. But again, you know better than I, we were in an environment that was unfriendly and hostile from a sociological standpoint, cultural standpoint, from a physical standpoint. And those were really the things that were preventing people from working and living independently, not a particular disability or a particular condition that they had. Those were things that could be overcome. In fact, wasn't that the purpose of rehabilitation?
I could never understand the illogic of we have this huge vocational rehabilitation program that really didn't pay any attention to anybody until they were out of school, instead of dealing with kids while they were in school and having some sort of linkage. There was no linkage until they were out of school, at which point in time, if their education sucked, it was probably too late to rehabilitate them because the issue then was an educational issue and not an vocational rehabilitation issue. So you're vocationally rehabilitating an illiterate when you should be vocationally rehabilitating someone who can read, kind of thing. The whole system just didn't make any sense to me.
It's oversimplifying it, and I apologize for that, but I think what happens in government programs, the helping programs: they take on a life of their own, and they become turf, and they become, like, somebody's property, okay? And once that happens, then it's very hard to do intelligent things with them, and you get this kind of dysfunctional thing
What was the object of vocational rehabilitation? It was to get people to work. But all the other policies were preventing them from working. In fact, all the other policies were telling them not to work. There were work disincentives under SSI and so on and so forth. Classic stuff.
A civil rights perspective; involvement in the 504 Democratic Club and presidential campaign, 1975-1981
AllisonLike I said earlier on, before the tape was running, I remember how--this was later, when I was at the Mayor's Office for the Handicapped--The New York Times--I mean, I used to get--I first learned to despise The New York Times because of the editorial stance they would take on issues of disability. It really was--I mean, this is a paper I revered, and it came as quite a shock to me when they would not look at the issues of disability from a human rights or civil rights perspective. They only saw it as a medical rehabilitative kind of issue.
Jacobson
Can you give me an example?
Allison
Yes. When there was the big--remember when there was the--I don't know whether it was the gas crisis--
Jacobson
Yes.
Allison
--or whether it was some of the demonstrations that went on over the buses having lifts, and you could not get the goddamn New York Times to understand what this was about. This was people--this was a civil rights, human rights issues. And they did not want to deal with it. They refused. I think today it's very different, but it was a moment of great disillusionment to me. Yes, life is growing up and being disillusioned. That's how you learn. So I have a much more healthier skepticism of the press--national, local, what have you--than I did when I was a lot younger. This wasn't a case of them getting it wrong; this was a case of them not getting it at all!
To me, it was just indefensible that they would take this position, that they would be so myopic. But that was part of the problem. You had "the old gray lady," as they called The Times, not recognizing your humanity. That it's very, very difficult to get the so-called establishment--whether it's political establishment or, you know, the social establishment or--you know, the opinion makers--it's very difficult to get them motivated to understand.
So one of the things I think happened with the disability rights movement which is unique is that I think a lot of it happened--unlike with the black civil rights movement and the feminist movement--a lot of it happened without the assistance of those elements in society which supported the other groups. I think that it's only relatively
Jacobson
Are you saying that disability rights was never seen as a political issue?
Allison
It wasn't seen as a political issue for a long time. That became another step on the road. I remember being at MOPD--
Jacobson
Mayor's--
Allison
--Office for People with Disabilities, formerly MOH [Mayor's Office for the Handicapped], and I and a couple of friends started the 504 Democratic Club, which later Frieda Zames and a number of other people--Marvin--I can't remember Marvin's last name now--have really run it since then. I mean, I was involved for maybe the first two years. The purpose of that--
Jacobson
What years?
Allison
1980-81. The purpose of that was you need to engage politicians at a high level that they understand, which is votes. And you need to engage them dramatically, and you need to engage them on a continuous basis to make them understand that you're not going away. You need them to understand you represent a far larger group of people than the numbers that they see when they come to your meetings and that your endorsement means something. Then and only then do you start to get a change in attitude on the part of the political people because now you've got something they want. Up until then, you had nothing that they wanted.
In a number of political campaigns that I did--I did Jimmy Carter [presidential], I did three of Ed [Edward I.] Koch's and I did Abe [Abraham] Beame--[both mayoral]. I did a number of them--anyway, one of the things I was always given to do was to take part in some sort of, like, citizens with disabilities forum and come out with a cogent kind of campaign piece that made sense, which would be the policy of the candidate and whatever.
One of the things we tried to do was to look at this and say, Look, your constituency--disability as a political issue transcends, goes beyond the person with the disability, who has the disability. The whole family: the wife, the husband, the children, the mother, the father, the aunts, the uncles. For many, the disability of that person is a central issue in their life. Therefore there's a huge amount of votes out there. It's never been addressed through political context, and once it is, there will be, I think, a positive response.
The biggest thing we did was in the Jimmy Carter campaign, which--oh, I fought with Judy [Heumann]. Judy and I had such fights in that campaign.
Jacobson
Tell me about those.
Allison
I used to remember screaming at her. I was in New York, screaming at her because she was cutting deals on the West Coast, okay? As only Judy can. And I'm the guy with the responsibility. I'm not even operating out of Atlanta, which was the headquarters; I'm operating out of New York, and we're trying to put together, like, coordinators in every
Jacobson
The Carter campaign was nineteen--
Allison
Nineteen seventy-five. In '80, he ran for reelection and was beaten by Reagan.
II. Mayor's Office for People with Disabilities, Civil Service Employment, and Reflections, 1973-2001
Eunice Fiorito and the Mayor's Office for People with Disabilities [MOPD], 1973
JacobsonLet's go back and talk about the Mayor's Office.
Allison
I was at the Camp Jened, and I had had a meeting with Eunice Fiorito sometime prior to that year.
Jacobson
Who was she?
Allison
Eunice Fiorito was director of social work at Bellevue [Hospital]. She was blind. Big woman, with red, red hair, big round face, a very, very dynamic woman--another person that made a huge impact in my life. She had been hounding John [V.] Lindsay, who was the mayor of the City of New York, and--I'm trying to think who the deputy major was a guy they got from the Liberal Party, Ed Somebody, and I can't think of his name.
She wanted to start--there was something called the Mayor's Advisory Committee on Mental Retardation, and she wanted to take that and change that to a much broader advocacy thing within city government, within the mayor's office. Required an executive order to set it up. She fought for two or three years. She had been the chair on this Advisory Committee on Mental Retardation, or Mental Disability--it was one or the other.
They did a report; they did some hearings, I think, and out of it came a feeling that "we need this new entity." This entity will reach out throughout government and make government responsive to people with disabilities. She finally got it, and I think it was, like, in June of 1973 it became real. And she recruited me sometime around September of that year, and in October of that year I went to work for the city.
Jacobson
Do you know if she was working with Judy or DIA [Disabled In Action]?
She was. She and Judy were close. There were a number of different--there were a lot of different, smaller organizations. There was PRIDE with Kurt Shamberg. There was the Co-Op City disabled organization.
Jacobson
What was PRIDE?
Allison
The acronym was Persons--I don't remember the acronym right now. It was run by a guy named Kurt Shamberg, who spoke with a heavy sort of Yiddish-Germanic accent, and Kurt was--it was basically a Queens-based organization. Kurt has passed away. Kurt liked to say, "I don't raise money, I raise hell." And he did. He would make outrageous accusations of people. What he understood intuitively was the symbolic power of a person in a wheelchair making a public accusation particularly against a politician. They didn't know how to deal with him. He would, I think almost orchestrate, like, confrontational kinds of things.
Jacobson
Was he in a wheelchair?
Allison
No, Kurt walked with a cane. There was the Parents' Association for the Handicapped, Molly Polanski. Molly also is not with us anymore. Molly was the foster mother for a number of disabled kids throughout the years. I mean, every major disability group had its own--you know, there was the National Association of the Blind; there was the American Federation of the Blind. Very different organizations. Very different philosophies. And then there was other entities of blind people and for blind people. Same thing for the deaf.
People were more or less grouped around their disabilities, so there was an additional problem here, which is, when you start talking about disability or handicapped condition or whatever in a generic sense, what do you mean? What are you talking about? Are you talking about mental retardation? Are you talking about developmental disabilities?--as it became known as. Are you talking about physical disability? Are you talking about auditory? Are you talking about visual? What are you talking about?
Each group had their own tale to tell, so what were you looking for? What you were looking for was the common denominator. You were looking for: Well, society treats us all like shit, was the common denominator. And so you sort of start there. Because this is not a rehabilitation movement; that's a different thing. Whatever issues you have with rehabilitation--which can be political issues; don't get me wrong--but, you know, there's a different kind of rehabilitation kind of need and regime for people with visual impairments than there are for people with hearing impairments, and so on and so forth.
But there was this commonality: we're all looked upon as second-class citizens. We're all looked upon as being less than human. You can phrase it starkly or not so starkly. Because what we are--this is a civil rights movement, and that's our common denominator. That's what we had.
And out of that, the cross-disability movement, came a tremendous amount--you know, we were talking about the pecking order in the food chain. A lot of that, I think, disappeared or was suppressed or was diminished by the cross-disability movement because--I remember Judy learning sign language, and I remember that she used to do sign language--we'd be at these big meetings. Yeah, more Judy stories. She would, like,
So there was--and then what you brought into this melange of groups was the veterans' groups, which were very standoffish. Disabled veterans' groups are distinct and different, unique. These were guys who grew up not as disabled people, not as people with disabilities, who became disabled largely through war and who look upon themselves and see themselves as people without disabilities, by and large, even though they have them, they live with them. They, in their minds' eye, see themselves not as a person with a disability.
All the groups out there--these guys were funded, because the government was funding them, and these guys had prestige; there was less of a stigma with this kind of disability than there was with any other kind of disability. The trick was to bring--to somehow align the veterans' groups with what I used to call the civilian disabled. It was very difficult because there, the hierarchy really, really stood out. They were funded, and they didn't want to use their funds for stuff that didn't affect their membership.
Precarious funding for MOPD
JacobsonGo back a little. So, you met Eunice Fiorito at one of these meeting?
Allison
I may have met her at a meeting, and then she asked me to come in. She knew who I was because I was running Jened. She knew who I was, and she had a series of meetings with people--Nick Pagano, people in the field--and called us in just to pick our brain. I remember that's my first conscious recollection. And then she hired me, and I ran the outreach unit, the advocacy unit, and then I became the deputy within three months.
The whole place--we were all on borrowed [budget] lines. Everybody--there wasn't one--you know, what they did is they played games. They didn't really fund it; they took existing lines that were empty, which were already in the budget, and they transferred the line to the mayor's office, so the person you're working next to is on an HPD [Housing Preservation and Development] line, and you're on a Mental Health and Mental Retardation line, and somebody else is on a DOT [Department of Transportation] line, and somebody else is on another line, so there is no budget for this. The budget is Eunice Fiorito, her salary, and maybe a secretary.
That's the only--that's the way it shows up in the budget. It's an old trick. Part of the time--what you do is you avoid criticism because he [the mayor] doesn't want her spending a lot of money. You have to be cautious because at any point in time the commissioner of DOT can say, "I really need that line back," and that line goes back to that agency, and then what happens to the person that's on it? So there's a little bit of--it's very precarious.
I was on a line from the Department of Mental Health and Mental Retardation. I didn't get paid for nine months, I remember. I don't know how--
She asked me to come over and the money was--it was, like, $14,000, big money. But I never saw it for nine months. It's a good thing I didn't have a mortgage. I would have been homeless. But that's the way the city did things. I mean, everything moved at a glacial pace.
Jacobson
When did that office really become established?
Allison
It was around June or July of '73, the executive order was signed. That's my recollection. I came on shortly after it was established.
Jacobson
But when did it get its own budget?
Allison
Well, that took a long time. I remember when Abe Beame became mayor, the first year he was mayor we were locked out of the budget. We were not in the budget at all. To this day, I don't know whether that was deliberate or not. Stanley Friedman was--no, Stanley was not the deputy mayor. I'm trying to remember. Larry Casanova was the deputy mayor at the time, and Eunice had a demonstration in front of Tweed Courthouse, where--was it Tweed Courthouse or was it on the steps of City Hall? Because we weren't in the budget.
They claimed it was an oversight, that the mayor--Abe Beame--he called her You-Niece. "You-Niece, don't be upset, You-Niece."
Jacobson
He was a short man.
Allison
He was a man of--he was horizontally challenged [laughter]. But he was a nice man. He was a very nice man.
Jacobson
That was '74?.
Allison
Yes. No, the election was in the odd year. It was '75. If you recall--you were still here--
Jacobson
Yes.
Allison
You recall the Beame administration. He had the fiscal crisis, he had the blackout, the second blackout. Lindsay had the first, and they caught the Son of Sam.
Jacobson
Right.
Allison
Hugh Carey was the governor, and they put together the Financial Control Board to oversee the financial dealings of the city because the city was bankrupt.
Works for Eunice Fiorito
JacobsonTell me, what was it like to work for Eunice?
Allison
To work for Eunice was to give up sleep. Eunice, God rest her soul, was a very, very, very unique person. She was extremely high energy level, and was in a terribly difficult position. I don't know if the community truly understood how difficult that role was. We were an advocacy agency. Politically, if you publicly did things against, in opposition to the policy established by the major, it was a suicide trip. And so when you're working in government, there are tremendous restrictions on what you can do and what you can say. And Eunice--I think she went constantly to the edge of the envelope and I don't think was ever fully appreciated for what she did, because I don't think people understood. They heard "advocacy agency" and felt that, Well, it's your job to rock the boat. Well, it doesn't work that way. The boat rocks you.
Jacobson
What were some of the things she did?
Allison
Okay. The best one that comes to mind is the gasoline-rationing embargo. The Arabs embargoed the oil, not gasoline, and we had a very significant number of disabled people who drove their own cars or who were driven. That's the way they got around. And there was no provision for them. It was an odd-even gasoline rationing. Malcolm Wilson was the governor. [Nelson] Rockefeller had become the vice president. [Richard M.] Nixon resigned. [Gerald] Ford became president. Rockefeller became vice president. Malcolm Wilson became the governor--1974.
We put together a plan for disabled people who drive their own vehicles or who were driven, which I probably still have a copy of somewhere, that was--actually the President's Committee on Employment of the Handicapped picked it up and used it as a national model. We were getting nowhere. There was a general who was, I think, the head of the state National Guard--I don't remember his name; I remember what he looks like, but I don't remember his name. He was the gasoline czar of the state for Malcolm Wilson.
Eunice and I planned and executed a massive demonstration which we could not take part in, in front of the governor's office, which led directly to a day-long meeting in Albany with the general with our plan. We went up there and said, "We have a plan." We gave them the plan. They adopted the plan. And we got through--and it was--
Jacobson
Tell me how you organized that.
Allison
We worked with people. I mean, we had a lot of people--I'm trying to remember. Eunice had advisory committees or something. It seems to me that she did, actually. So we were in contact with a lot of people. We had quite a big network. If you get forty or fifty people in wheelchairs out in the middle of the road, blocking traffic, it causes a tremendous--it has an impact. And it was--that was not--she could not let the mayor know she was doing it. This was against the governor. They were of different parties and everything. And maybe it's not a good example.
But she would do things within city government also in terms of fighting with people. We were not popular. That office has never been popular with any mayor. I don't care--I tell you ironically, I think the best mayor with regard to this issue was Ed Koch, and he never got credit for it. I think that he was in some ways more sensitive to the issue than any of the other mayors, including David Dinkins, who everybody thought was so pro-disability and everything. I think Ed Koch was more sensitive. Ed Koch did a lot more.
Jacobson
In what way do you feel he supported you?
Allison
He didn't fire us. That's number one. Eunice was gone by then. Eunice and Ed did not get along.
Jacobson
Where did Eunice go?
Allison
She went to Washington. She went to the Department of Education, Vocational Rehabilitation Services.
Jacobson
Did she get appointed?
Allison
She was appointed by Jimmy Carter, but I can't remember what her title was. We did a lot of work for Jimmy Carter, so--I mean, the Carter administration--remember, we had the big national conference on disability, which was with all the state committees that they set up, so there was an elevation of the issues going on during the Carter administration, which sort of came hand in glove with the fact that that was, like, the first real presidential campaign with a significant kind of campaign plank on disability issues.
I think he saw us--being an ex-serviceman, he saw issues of disability in a very different way than--it was not academic to him. I think he had lived and known people with disabilities and they functioned. You leave people alone, they function. Just leave them alone. Let them do it.Senators are real open to a lot of things. I know it's a real generalization, but I found it true more often than not. Jimmy Carter was a relatively simple guy. I mean, not simple that he was not complex; he was complex. But he grew up in very rural circumstances and everything, and life was very fundamental. Just like white Southerners had to deal with race, they also had to deal with all the other issues, and there wasn't the luxury of psychoanalysis or whatever.
So Eunice left. She and Ed Koch were--I remember we went to--Ed was at Congress, and we were in Washington doing God knows what, and we stopped in Ed's--Ed was her congressman, and she was, like, rude to him. I said, "Jesus." And I knew he was going to run for mayor. She was, like, really nasty, and Ed was nobody to be nasty with because he could be twice as nasty as you were. She was not afraid of Ed. Ed wasn't afraid of her.
Afterwards, I said--
Jacobson
How was she demanding--
Allison
She was just demanding things. I mean, you didn't demand things from Ed Koch. I mean, you didn't do it in kind of, "Why aren't you doing that?" kind of stuff. He didn't
She was lucky because she had the position from Carter. She took it, and I went--I delivered the message, and I said that "Eunice has a position offered to her by the Carter administration, but if the mayor wants her to stay, she will stay." It took about a day, and they came back and said, "Tell Eunice to take advantage of the fine offer she has." That was it. She left.
Julie Shaw became the second director. Julie used to send out Christmas cards that said, "Commissioner and Mrs. Shaw." He was very into titles.
Jacobson
How was that different?
Allison
Well, Julie was very different guy. They were just totally different people. Julie was a very articulate, very bright man, very articulate. He was not formally educated. He didn't have degrees or anything. He'd been in city government forty years in the comptroller's office, I think. So he knew city government. And he'd been an activist in disability issues for a long time. It was kind of like a natural--you know, sort of the moment. You had a man--and then--I don't know--it sort of--I'm trying to remember. I was gone for a portion of the time because I did a twelve-month stint at DOT, the first time they tried to set up a paratransit system. I was assigned over there. So I missed part of Julie's regime toward the end.
But, you know, Julie had a tendency--I think his energy level was not as great as Eunice's. Eunice could keep going all night, and Julie would sort of fade out after a while. That was the fundamental difference. There was other stuff, but not really relevant.
Profound impact of independent living movement
JacobsonLarry, you were with that office until 19--
Allison
Ninety-one, I think.
Jacobson
Ninety-one. So you saw the philosophy of independent living movement start to take hold. Can you comment on what that was like? How did that relate to the disability rights philosophy?
Allison
The independent living movement was profound. It made a profound difference. One of the differences I think was it was totally a movement by people with disabilities for people with disabilities, and there was an elimination of the non-disabled service provider in that relationship. And I think that was of profound significance.
It was also the beginning of a phase in the movement, which I think every movement goes through, which is the movement is a liberation movement; the movement is for inclusion, and then the movement withdraws into itself and doesn't let anybody in. There's I think a normal historical pattern for all liberation struggles that you can chart. You'll see at some point.
At this point, which is relatively a mild one, there was, I think, a conscious effort on the part of disabled activists to eliminate the non-disabled. "If we're going to do this, we're going to do this on our own" kind of thing. I remember at the time--and the independent living movement was I think the institutional manifestation. At the time, it sort of dawned on me that I was a little bit hurt. Those of us that had sort of put our time in and everything were sort of like being told, "Look, we can do it ourselves" kind of thing. In a way, it prepared me for parenthood.
The politics became a little grim because of this. There was, like, a kind of anger and hostility toward nondisabled people in the area. I think it ultimately led me to say, "Look, I put twenty-five years in, and I think it's time for me to exit." Because intellectually I understood that there is this historical evolution, and it's a phase. It passes. Ultimately people realize: hey, we need solutions; it doesn't matter where they come from kind of thing, as long as it adheres to the principles that we set down.
But the independent living movement put flesh on the bone and not only provided substitute, substantial services--I mean, services that were directly relevant--not that voc rehab is not, but housing, job training, employment--you know, direct help with medical benefits and stuff like that--all of the things that the independent living centers had done for people and had gotten into, housing being a very significant one.
This was stuff the other service agencies should have been doing and were not doing because they were captive of the government grants program. They were doing what the government allowed them to do instead of what was needed. This was the rise of independent living. California led the way. It was a major victory and a giant step forward in seeing political leaders, anyway, look at this thing as this is a civil rights issue, it's a human rights issue, and getting out from under that past, like, just cutting people down.
I was never really that involved with the independent living movement. I think from time to time there was--well, always with the office, because with the restrictions we had on us, there was a kind of--what grew was kind of suspicion of "What are you doing? You're not doing anything." You hear that today. "What is the office doing? It really doesn't do anything."
Jacobson
When I read your resume, and I read everything you were involved in--getting polling places accessible, transportation access, employment and government accessibility---I was amazed at how much MOPD had accomplished.
Allison
We did a lot that never--and I always say "we" because it was always a team effort. It's very rare to have just one person.
Jacobson
Who was the team?
Who else was there? We had a lot of turnover. We had almost like 100 percent turnover every year, so it changed.
Jacobson
Was it headed by Eunice?
Allison
It was Eunice, then Julie; it was Tony Santiago, and then there was--after Tony--oh, God, what's her name?
Jacobson
Carol.
Allison
Carol Ann Roberson. And after Carol Ann, Ann Emmerman.
Jacobson
Who decided what issues to tackle?
Allison
It was kind of like a consensus agreement. There was really nothing formal. Issues would be brought forward, laid on our doorstep, and we always felt a tremendous obligation to respond.
Jacobson
Who would lay them at your doorstep?
Allison
Disability groups, individuals. It would come through the advocacy workers trying to help people. Sometimes it would come through government. There was always tremendous--EPVA, for example, Eastern Paralyzed Veterans Association, was always tremendously involved in transportation.
Jacobson
What about DIA?
Allison
DIA would bring accessibility issues, housing--each group served a specialty, although most of them did more than that specialty. When I think of EPVA, I think of transportation; when I think of DIA, I think of accessibility; and other groups, I think of employment. So you had these issues thrust upon you, and the trick was you tried to deal with them. I think by and large, over the long run, we were successful. We laid groundwork if nothing else. But we had our failures, too. I mean, we had limited resources. We had CETA people who were basically unemployed people who the government was paying to work.
Jacobson
CETA was?
Allison
Comprehensive Employment Training Act.
Jacobson
Okay.
Allison
Okay, which is no longer--it's defunct. A lot of our CETA people in the early eighties stayed on in city government and became permanent provisionals, and retired with a pension. We didn't have people necessarily that knew anything about the area, and you were pretty much--we dealt with who they gave us. And we had to pick from--we interviewed them, and then we were always looking to hire as many people with disabilities as we could, so that was another element.
But even that was--you always run the risk, whenever you--if you have an issue area and you want someone to handle the issue area, and you start putting--don't get me wrong--you start putting--I'm not going to say extraneous, but you start putting criteria on who you're going to hire that is not directly relevant to [hits table for emphasis as he says the following words] can the person get that job done. That's the bottom line. You run a risk. There were people, disabled and non-disabled, we would hire who we would have to let go because they couldn't do the job, and the bottom line was you got to solve--
I always thought this is an agency that should put itself out of business. The goal here is that it doesn't perpetuate itself, ad infinitum, till the end of time. That there comes a point in time when there's no longer the need for this agency because government is functioning and dealing with people with disabilities in the same way they deal with everybody else, and that there is no longer any need--
And in point of fact, the agency now is down to about four people. It is run by a nurse, who I don't know very well.
Jacobson
Let me put a new tape in.
Eunice Fiorito and Judy Heumann, similarities and differences
JacobsonDo you have anything to add about the Mayor's Office or about Eunice?
Allison
As I said before, Eunice was a very significant person in my life personally. She was I think a very significant person in the lives of--she affected the lives of a lot of people, I think. I think we're all very fortunate to have Judy on the West Coast and Eunice on the East Coast. They were really very alike in a lot of ways and very different in a lot of ways, but they were both people with inexhaustible energy.
Jacobson
How were they alike, and how were they different?
Allison
Well, they were alike in that they were focused and they were driven and they were issue oriented, and they were different in that I think they approached things somewhat differently, Judy coming ultimately from the independent living movement and Eunice being in government. It was only natural that that should be that way. Plus I think there's a way of doing things in California, and there's a New York way of doing things that Eunice was more comfortable with.
I always thought there were times when there were tensions between them, but it was never anything I thought that was tremendously serious. You're in a movement. I think tensions arise. I think it happens when people are passionate about what they're doing.
Jacobson
Go on.
Eunice let me do a lot of things on my own, which I'll always be grateful for because it was a good education. We got to work with almost every city agency in city government, which gave me a lot of understanding about how city government works, which I've used in every job I've done since. Eunice did a lot of the policy and the high-visibility work. She did a lot of traveling. She was, like, the urban--like, we always said the mayor of the city of New York is sort of the national voice for urban America.
Well, Eunice was sort of the national voice for urban disabilities America and she did a lot of networking and a lot of traveling and a lot of, like, setting up mayors' offices around the country. We tried to network--actually, we had a couple of conventions, tried to set up a national organization, too, so that we could exchange information and sort of support one another.
So she was an innovator in that respect. Eunice took no prisoners. If she wanted to do something, she went out and did it. She really was not one--"no" was not an answer that she accepted.
ACCD, the jockeying for power
JacobsonDo you remember when she became president of--
Allison
ACCD [American Coalition of Citizens with Disabilities]?
Jacobson
Yes.
Allison
Yes, I do. And I remember after Jimmy Carter won, Joe [Joseph A.] Califano [Jr.]--the signing of the Rehab Act amendments [Section 504] and demonstrations outside Califano's house, and then the sit-ins and the whole thing. That was a very painful time because Eunice was put in a very difficult situation, where she had in essence invited Califano to speak at the ACCD and he had accepted, and she had to dis-invite him because of this, and it was--and I remember telling her--I remember telling her--I said, "Eunice, this is a moment in time where if you feel strongly about the fact that anybody once invited should not be dis-invited, you should resign. You should not have to do this." She chose not to resign, and she dis-invited the guy.
Oh, there was a lot of anger. That was a very bad period. There was a lot of warfare going on and a lot of jockeying for power. It was a relatively ugly time, in my recollection.
Jacobson
What do you mean "jockeying for power"?
Allison
I think that people understood that something was happening on the national level and there was, like, a power base to be built, and I think whenever you have something like that, this is, again, people being people. If they sense there's a vacuum even if there isn't, they want to rush in and fill it. I think there was a lot of political jockeying for power.
By whom?
Allison
There were a lot of people from D.C., who had been on the national scene for a long time, okay? So dealing with the Hill was something that was not strange to them. Now you had people coming in from the [West] Coast; you had people coming in from New York; you had folks from Chicago to create this national thing. I think that there was tremendous tension for a while between different elements. I don't remember exactly who it was. I just remember there being--you could almost, like--there were groups within groups within groups.
Energy was spent on political survival which should have been spent on issues, but that's what happens when you form political groups. It is inevitable. You have to expect, particularly when you're in a leadership position, that not everybody is going to be thrilled with the fact you're the leader, and that the first thing they're going to try to do--and we're watching it right now with a president [George W. Bush] that did not get the popular vote but won the election nevertheless, who is being sort of like--you know, sliced off like sushi. They won't appoint his people; they won't do this; they won't do that. That stuff goes on. That's part of politics.
The ACCD was a political organization. I mean, you got to deal with that fact. It was a political organization, and there's going to be factions within it, there's going to be people taking dramatically different positions on issues, and there's going to be jockeying for power, and people are going to try to move on up and to move people out, and that's what was going on.
I don't think people were necessarily prepared for it at the time, but it was happening. It's not pleasant. It's not nice. People basically don't want to--if you're a person that loves adversarial conflict, you have a problem. I mean, you need to see somebody, because most of us are fairly reasonable people; we want to talk things through, arrive at a consensus through the democratic thing and move on with our lives.
That's my memory, anyway. I remember being angry at a lot of people. I was just as crazy and pissed off as anybody. I was always pissed off then.
Poll accessibility; board of elections; leaves city government, 1991-1997
JacobsonTell me briefly what you've been up to from the time you left the Mayor's Office.
Allison
Okay. I'll give you a little bit of prehistory. David Dinkins became mayor, and Ann Emmerman became the director. I was deputy director. She brought in another woman as an assistant director. I had been doing for Ed Koch, while I was--I had been reporting also to his general counsel, counsel to the mayor, and I had been doing a project to eliminate architectural barriers to polling places. And it was under court order. The state had passed a law. The law was never honored. Lawsuit. City loses. Judge orders--and I was given a shot at--"Okay, 25 percent of the city's polling sites are accessible; the other 75 percent are not. You're job is to make them accessible."
So I was doing that on a half-time basis. I was spending a great deal of time on that. Ann came in, and I continued to work on that. In fact, it was taking up more and more of my time. I was also seeing--I was living with somebody who was running an office called the Voter Assistance Commission, which was a new office to assist people that had problems in voting: immigrants, people with disabilities were among them. She was fired by the next administration. She subsequently was appointed to the Board of Education by the Bronx borough president almost as a slap in the face to the mayor. There became a point in time when the president of the board decided to resign after one year, and she was going to become the new president. She had the votes, counting her own.
Jacobson
What was her name?
Allison
Ninfa Segarra. Actually, she's the present president of the Board of Ed. I was still in the mayor's office, and she announced that she was a candidate for the presidency. That was a Monday. David Dinkins announced that Carl McCall would be his new candidate for appointment to the Board of Ed and that he expected Carl McCall to be made the new president. That was a Tuesday. Wednesday I was let go. And they said it was for budget reasons, okay?
So I was out of work for about a month, and I went to the Board of Elections, and I said, "There's nobody to do this project now." But they couldn't afford to pay me what I'd been making, so I took a $17,000 pay cut.
Jacobson
Wow.
Allison
And I finished up the job working out of the Board of Elections. Look, I'm glad I did that, and I got good advice, because jobs were scarce at that particular time. "You'll get over this." But it was hard. It was really hard. I was in debt for the next fifteen years as a result. I was really behind the eight ball.
So I went to the Board of Elections. I did that. By the time I left in 1994, over 99 percent of all polling sites were accessible.
Jacobson
That's incredible.
Allison
There was only one or two left. We had the highest rate, I think, in the state, so we did a good job on that. Then I went to Off-Track Betting. I went from handicapped to handicapping. I was the press guy, the government relations guy, the community affairs guy. We did some interesting things. We put racing on television, on the government access channel, because it's a government-sponsored deal here, which increased telephone betting, which--we got some new tele-theaters built. The agency was in the red. Rudy [Rudolph] Giuliani campaigned saying, "New York City Off-Track Betting is the only bookie losing money in the United States." And it was true.
We turned it around in a year. And then I left there and I went to--
Department of Information Technology and Telecommunications
JacobsonWho was mayor?
Allison
Giuliani. I was very, very active in the Giuliani campaign. I was active in the'93 campaign, and I ran the Bronx operation for the'97 reelection. And then I went to Department of Information Technology and Telecommunications (DOITT) where I was given the job of regulating all the public pay telephones on the city streets, which is probably the worst job I've ever had. I say that. I really mean that. It was a very frustrating job.
Jacobson
What do you mean by--
Allison
Regulating?
Jacobson
Yes.
Allison
Well, they have to be clean; they have to be operational. We don't regulate them in terms of what they charge. The federal government has taken that away from everybody. They can charge whatever they want. But they have to be operational, and they have to be clean. We already had 33,000 phones on the streets to begin with when the law went into effect, so in effect we were taking illegal funds and making them legal.
And then we were offering franchises to the various companies, which then put them into a business relationship, contractual relationship with the City of New York, where the City of New York would get a certain percentage of the money that they made, and that for phones on the curb they could put up advertising and we would get a percentage of that money.
It became incredibly--very political, highly controversial. There are community [planning] boards in the city that don't want any telephones. The community boards in the city don't want anything. There is a high degree of "not in my backyard" here, which I think if left unchecked is going to just strangle the city. It's just going to strangle--
It was a hard five years. So when I had the opportunity to retire, largely because they changed some laws and I was able to take advantage of the fact that I had been a certain pension level, tier, when I started teaching back in 1968, that--
Retires from city government
JacobsonYou taught?
I taught CRMD. I taught one year in a private school in Bed-Stuy [the Bedford-Stuyvesant section of Brooklyn], and I taught then that summer at the center in Brooklyn, and then I taught for two years in the public school system.
Jacobson
CRMD?
Allison
Children with Retarded Mental Development. That was the nomenclature at the time. I fit under this thing. I was able to get all the time in city government back, so I just said, "I'm crazy, because I can make a lot more money by getting a job in the private sector, having my pension. I got a kid in college. I've got another one that's going to go to college." I needed to be able to--because when I tell you that I never fully recovered from the layoff in 1991, it is not until very recently that I can say that I fully recovered.
Jacobson
Really?
Allison
It had profound financial implications.
Jacobson
I bet it was also an emotional--
Allison
Yes. I've worked since I was, like, eleven years old. It was a paper route or something. I've never not worked. To wake up suddenly one day in July and the only place you have to go is the unemployment office was devastating. I currently am working for an advertising company that has a contract with the USPS.
Reflections: strong impressions of Camp Jened
JacobsonWhen you worked at Oakhurst, I can't remember if we covered this--how did you get that job?
Allison
I think I--how did I get the job? I don't know whether--maybe I went to the NYU employment services and I was referred? That might have been--I don't remember exactly. That might have been--the college--you know, the university always had a section where you went and you said, "I want to get a summer job" and--you know.
Jacobson
What was it about that job that attracted you?
Allison
At the time, I just needed a job. I just needed to work. I had no idea what I was getting into. I had no idea it was going to change my life. It changed my life in profound ways.
Jacobson
What do you think about all these people who were campers who are now out in the world--many of them now live in California--but looking at it from your perspective, what do you think?
Allison
I am very proud of everybody. That's the way I feel. I think that in some way, in a small way, maybe not so small a way, Jened was a catalyst for what happened in the lives of people. It makes me feel very good. It makes me feel--you know, you want your life to be meaningful. You want things you do to be meaningful, and there's nothing more
Jacobson
Not even that many years.
Allison
We were almost the same generation, you know? It was really a magical kind of thing. I'm proud of people. I feel good about what we did. That's a part of my life--it's the kind of thing, "Well, what did you do?" "I don't really know yet. Ask me in ten years and I'll tell you" kind of thing. Now it's coming back to say, "This is what you helped to do." Whether it's true or not, it's nice to hear it. I'm just happy for people.
One of the things that happens in this field is that you lose a lot of people early, and that always was hard for me. I went to too many goddamn funerals at an early age and everything, to the point where I'm so funeral-phobic at this point that I can barely--I mean, unless it's a relative or somebody close, I don't go to them anymore. I went to too many as a young man.
That's one part of, like, working in this field and getting close to--I think if you're detached, it's another thing; but if you get close to people, you're losing a friend. You lose a lot of friends. And I've lost a lot of friends to AIDS. I mean, there's a lot of [camp] counselors that are gone. Jack Geckelman. Dennis--I don't know where Dennis is, but the last word is he was HIV-positive, and he went to Europe, and I never heard from him again.
Jacobson
Dennis?
Allison
Sgambelluri Jack. That was horrible. That's the last time I saw Shelley and Dave Arnou and--
Jacobson
Shelley Koy.
Allison
Yes. Between the campers that have gone far too early in age and--so it's--that was always hard. That was always hard.
Jacobson
But I think if you talk to a lot of staff and campers from that period, you find that Jened was a significant part of their lives.
Allison
It's nice to know. That was the intention. It's nice to know. You know, it's a good feeling.
Jacobson
Larry, is there anything else you would like to say?
Allison
It's great to see it, kiddo. You know, since I retired it's been a time of retrospection. They had a party for me. One of the guys who works for me arranged this. They had a bagpiper pipe me in. They put together a slide show and everything. It was quite touching. You're sort of forced to confront your life, you know, and sort of dwell on things that you did, think about them with the luxury of distance and time. This has been part of that almost. We touched on it during that party, but this is--I mean, you made me think about things that--you sort of drilled down deeper. I just remember there was
Jacobson
Oh, we knew.
Allison
But you knew.
Jacobson
Yes, we knew.
Allison
I mean, how many women did I marry from that place? At least two. It was a very romantic place.
Jacobson
Yes.
Allison
It was tremendously romantic. You worked hard. You believed in what you were doing. You were young. You had energy. You worked hard, you partied hard, and it was just a romantic place, and you couldn't wait--it said something about maybe our life in that there was a real thirst and hunger to do something that made you feel that this is something worthwhile, that this is worthwhile, that this is not just a selfish whatever. It has its own reward as a result.
Jacobson
Yes.
Allison
And people really wanted to--I mean, it's almost like you can get addicted to that.
Jacobson
I think you said it before. It was a utopia. It was a beautiful spot with mountains all around the camp, even though all the buildings in it were falling apart. The roofs leaked--
Allison
Remember that goddamn rec hall? Jesus! I mean, I was sure they were going to condemn it. The rec hall, and then we used the dining hall for a lot of stuff. But it was so hard to keep that place going. I mean, the physical plant--in the wintertime--I used to go up in the wintertime. You couldn't--you had to put on snowshoes to get to the director's cabin. I think that's the reason Al Winters built that above ground. Everybody always used to say, "Al doesn't want any disabled people to visit him. That's why he built stairs." But I think he also had a thing in terms of, like, if he wanted to use it in the wintertime, you had to elevate it because the snow would literally be this deep.
Jacobson
You're talking on tape.
Allison
Yeah, this deep. Can you see? Yeah, about three feet. You had to put on snowshoes to get to it.
Disability Rights and Independent Living Movement Oral History ProjectDenise McQuadeEarly Activist in Disabled in Action, Advocate for Independent Living and Transit IssuesInterviews conducted by
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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 Denise McQuade, 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:
Denise McQuade, Early Activist in Disabled in Action, Advocate for Independent Living and Transit Issues, 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 I, Regional Oral History Office, The Bancroft Library, University of California, Berkeley, 2004.
Tape Guide
- Interview 1: July 9, 2001
- Interview 2: July 10, 2001
- Interview 3: July 12, 2001
Interview History--Denise McQuade
Ms. Denise McQuade was selected as a narrator in the project because of her leadership role in the cofounding and development of New York City's Disabled in Action, Inc. [DIA] in the early 1970s. Along with the efforts of a group of committed activists with disabilities--which included cofounder Judy Heumann, who became one of the foremost leaders in the disability rights and indpendent living movement--Ms. McQuade helped establish DIA as one of the first organizations committed to disability rights activism. By developing a strong grassroots base which encompassed the five New York City boroughs, DIA lead demonstrations in New York City, and Washington D.C. to fight for access to public transportation, public buildings, housing, education, and employment. Ms McQuade is also the former executive director of the Brooklyn Center for Independence of the Disabled, Inc.
Since Ms. McQuade is employed full-time, the three-session interview took place on the evenings of July 9, 10, and 12, 2001, in New York City, for a total of eight hours (although a portion of Tape 5, Side B, was incomprehensible due to a mechanical difficulty). The interview reacquainted Ms. McQuade with the interviwer; they had worked together as activists during the first six years of DIA. The initial interview session was conducted in one of the counseling offices of Independence Care Systems, Inc., located in midtown Manhattan near to Ms. McQuade's place of work. The remaining two sessions occurred in the cozier sitting area of the interviewer's Manhattan hotel room. Though Ms. McQuade lives in Brooklyn, the Manhattan locations were more convenient because of issues of transportation and tight scheduling.
The interview sessions were characterized by Ms. McQuade's articulate and lively narration, even though they lasted late into the evening. Concerned that Ms. McQuade would be tired after a full workday, the interviewer prepared for, at the most, and initial two-hour session and had brought only two one-hour tapes. However, at the conclusion of the first interview, Ms. McQuade continued to verbally complete her thought several minutes after the tape recorder stopped recording. From that evening on, the interviewer kept an ample number of tapes on hand!
Highlights of the interview include Ms. McQuade's vivid memories of the beginning of DIA--late evenings at Judy Heumann's family home stuffing hundreds of envelopes with the organization's newsletter. Her narration offers perspectives from various viewpoints as one-time grassroots activist, former director of an independent living center, and, presently, an administrator of the Metropolitan Transportation Authority--positions which she has negotiated within the highly political framework of New York City.
Ms. McQuade's transcript was lightly edited by Esther Ehrlich and sent to Ms. McQuade for content review. She made minor changes. The interviwer read through parts of the transcript to add clarification to specific questions that were asked during the interview.
A videotape of a group interview with Ms. McQuade and several other New York activists supplements this interview. The videotape is available for viewing at the Bancroft Library, at the University of California, Berkeley.
Interviewer
Oakland, California
I. Early Years; A Burgeoning Activist Identity; The Creation of Disabled in Action [DIA]
Family background, neighborhood as child, parents' employment
Why don't you start off by you telling where and when you were born and giving me a little bit of your background?
McQuade
I was born February 18, 1948. I was born in Brooklyn, and I lived most of my life in Greenpoint, Brooklyn. I have two sisters, both younger than me. My parents are James McQuade and Mary Bynon McQuade. Dad was born in Greenpoint. My mother was born in Sayville, Long Island, but moved to Greenpoint when she was very young.
Jacobson
What type of neighborhood?
McQuade
The ethnic composition, it was largely Irish-Catholic and Polish-Catholic. We had a synagogue, so there was a Jewish population. There were some Italians, but the big ethnic group was Irish and then Polish. Now it's very much Polish. There's a new wave of immigrants that came in and they're basically, I would say, revitalizing the neighborhood. Our claim to fame in Greenpoint was the [USS] Monitor was built there in the Civil War. It was settled by the Dutch, so it was probably a neighborhood that's been there for three hundred years or more.
Jacobson
What kind of work did your parents do?
McQuade
Before I was born my dad worked for Western Electric. He was an internal investigator. They would come in and check books and all different things for Western Electric. My mother worked first as what they called a soda jerk.
My mother comes from a family of seven. Her parents were immigrants from Ireland. My father, it's a family of two, he and his older sister, and his parents were born here. His grandparents were from Ireland. During the Depression, my mother's family was very badly affected. My father's family--my grandfather worked for Con Edison, I believe, and my grandmother was a teacher in the parochial school, so they weren't directly impacted by the Depression. My mother's family was, so my mother, being the oldest, had to leave high school when she was in her last year, I believe. She worked as a soda jerk to help supplement the family's income. They eventually had to go on public assistance, welfare, whatever they called it at that time. Then when she went to work after that job, she worked for Eberhard Faber; they made pencils. I don't know if she did clerical work or if she actually made pencils.
They married in February of '43, during the war, and my dad and other people were about to be drafted, but my dad had, from childhood, I guess from fourteen or so, very severe asthma. When he was checked out, they felt he couldn't be accepted into the army, so he was 4F during the war. He worked in Western Electric, continued working there, and mom worked at Eberhard Faber. When they married, there was a shortage of housing, so they moved in with his mother and father, and they lived there, I guess, the first four or five years of their marriage. I was born after the war, and I'm the first child, then my sister, Virginia, and my sister, Maureen. They're about seventeen months apart, so one is '51 and one is '52--their dates of birth.
Contracting polio, surgeries and hospitalizations, readjusting to life at home
McQuadeI contracted polio when I was three and a half, so that would be 1951, but I got it in the off-season. I got it in November, not in the summer when most people contracted polio. The doctor, our family physician, didn't realize I had polio. I was susceptible to sore throats and running fevers, so at first they just thought it was a bad sore throat. I still remember this part. I remember saying to my father, "My legs hurt," and he was picking me up. We wore--I'm sure you did the same--the pajamas with the feet and legs and everything. I remember I was holding my sister in the bed. I was in my parent's bed. All my cousins--everybody lived next door, of my mother's family. Our grandmother on my father's side was around the corner, but my mother's family--she had three sisters all living next door, and two brother-in-laws, and then another brother was living, I think, in Jackson Heights, at that point, with his wife. My grandparents died six months apart in '48 when I was born. I know of them, but I never met them. I knew my grandparents on my father's side.
So really, when I contracted polio, I was three and a half. I was taken to Kings County Hospital. I was in an oxygen tent, but I never was in an iron lung. I'm assuming that the muscles in my diaphragm were not so weak that I couldn't breathe, but I needed the oxygen. When I was first taken to the hospital, they told my parents I was going to die, so that was quite traumatic for them. Then I obviously didn't die. I went to St. Charles Hospital. It doesn't exist anymore. It was a Catholic hospital for children with orthopedic disabilities. I was sent there--
Jacobson
Where?
In Brooklyn Heights, Hicks Street in Brooklyn Heights. It's now an apartment, but growing up that was my hospital. There was a clinic next to it, so I went there. We didn't have a great deal of money. My dad--
Jacobson
It was what kind of a clinic?
McQuade
Just a clinic for kids with orthopedic--a lot of kids had polio, but other people had other kinds of things. I had surgery on my legs there. I had spinal fusion done there. In those days, they were doing a surgery on your legs, something about if they didn't take out tendons your legs would go apart rather than staying together. Who knows? The spinal surgery--it was needed--a lot of people who had polio, the muscles on one side of your spine are stronger than on the other side, and it pulls the spine out of alignment. So, when I was about nine going on ten, the doctor said if I didn't have the surgery I would die before I was twenty-one because my spine would crush my lungs. Again, who knows? But a lot of us had spinal surgery, including Judy [Heumann] and all of that.
I was in the hospital from the time I was--I turned ten, and I was in the hospital until about November of that year. I was sent home in a half-cast. In those days they didn't use the halos. They had a cast from your head--from back here--down to your knees, or both knees. They would open up the back and fuse your spine using bones from a bone bank. I went home for about three months, then I went back to the--go ahead.
Jacobson
From the back--
McQuade
From the back of your head--it's a body cast--down to the knee, to keep you from moving around. When they did the surgery then, they start from the base of your spine, your sacroiliac, and work their way up. It's excruciatingly painful. Back then they were using bones to support the spine, but bones from a bone bank. The only reason this is significant--when I went back in the following year, I went back in January, I was supposed to have the cast taken off and start rehabilitation. When they x-rayed my spine, part of the fusion didn't work, the bone had disintegrated, so they had to take bone from me. They used some of my bone on one part of my fusion, I think as you got higher up, and then they used another part, so I think my scar looks like an arrow pointing to my rear end. At any rate, I was fused from my neck down. I still have severe scoliosis. I expected a very straight spine, but that's not what happened.
Jacobson
Denise, what's a bone bank?
McQuade
All I know is they had bones. [laughter] From where? We assume from human beings. But they would use them to support the spine. I haven't a clue. You know, you're too young to really understand exactly how this worked.
I would say, for my childhood, I was in and out of the hospital quite a bit. I went in--like, when I went to Saint Charles, I was paralyzed from my neck down, so I had to stay until I was rehabilitated. Eventually I was able to move my hands and move my arms. They did physical therapy, and then they fitted you for a brace and everything. When I first came home, I was about five, and I had a full body brace because my back isn't strong enough to support walking on just leg braces. I was brought home. Then I went back in when I around six for the surgery. They did one leg, then they did the other. Then I went in for rehabilitation again. I had a dizzy spell. I fell out of the bed, and I
I made my Holy Communion in the hospital with this little boy. I was in a wheelchair, with a leg board, because I couldn't bend my knee, and had to go through rehabilitation again, and he was on a stretcher. I spent a lot of my childhood away. There would be periods when I was home, and then I would go into the hospital, and then I would come back. In terms of the impact on family, it was getting used to having siblings again, because my sisters were--Ginny was an infant when I first went into the hospital. When I came home--she was just three and a half years younger than me--she was around two. Maureen was an infant. They were used to me being in and out of the hospital, so it would be learning to share. Because though you're in the hospital, the focus of your parents is on you. There's no sibling rivalry or anything. It would be like getting used to being part of a group of siblings every time I came home. That would be some of the things I remember.
I remember one year--these are like highlights that you remember--I came home from the hospital around the holidays. This was like after one of those surgeries and I was going to go back in, or else I was home for good, I forget which. People used to come to hospitals around holiday times, and they would give you dolls and different things, and I had a cache of five dolls. When I came home, my sisters were more excited about the dolls than to see me. I was less excited to see them than to be told that I had to share the dolls. That's one of the things I remember. My mother said, "You have to share. You have five. You just have to share with your sisters." It would be relearning things like that.
Experiences with doctors
JacobsonDo you remember anything about the doctors?
McQuade
Sure, we all have our war stories. I guess the stuff that I remember--in some ways, there was a lot of comraderie, because you--in the hospital I was in when you were under six you were in the little children's ward, then you went to the big girls' ward. Where I broke my leg I was still in a crib, but it was a big crib because I wasn't that big. There were other girls my age, and then there were big girls. Funny moments were, Lassie came to visit, and they wanted to do PR--
Jacobson
Who?
McQuade
Lassie's manager and entourage [laughter]. We were all excited. The teenagers were thinking it was Fabian. That was a big thing. Then we found out it was Lassie. I remember they were talking to me, and I think they wanted to use me for the picture with the dog. I was all excited to see Lassie. But Lassie jumped up and put his front paws on the bed and barked, and I got hysterical, so I was not chosen for Lassie to push my little wheelchair [laughter]. That was kind of a funny thing.
With doctors and all--I think I hated being in the hospital. You made friends, and there would be funny things. What we used to do, you had night tables, and one of the girls that was in--there were three of us in a row that were of an age, and one had a radio, so we used to crawl across, or slide across the night tables and sit in her bed and listen to the radio because we had to go to bed earlier than the bigger girls. There would be stuff like that. My early schooling, first grade, second grade, was really in the hospital. We had nursing sisters and some lay nurses. So some of the stuff I remember. We had this one sister who we used to swear must have been at a women's prison, Sister Aman. She scared the hell out of all of us.
Jacobson
What was her name?
McQuade
I remember Aman, but maybe it was a different name.
Jacobson
Aman?
McQuade
I don't know if it was like A-R-M-A-N-D, Armand, something like that. Maybe there was a saint. I don't know. But she was scary. In terms of the doctors--some of the things that were really hard, like when I had to have physical therapy, your tendons and everything get tight, so it would be very painful. I remember one particular time I was being stretched. I was too young to really know a lot of curse words, but I must have heard people curse at some point, but I think I cursed this PT [physical therapist]. The bad times with the doctors, I think, is similar to everyone's experience. When you went to the clinic, or in the hospital there are rounds, and people come and they discuss you as a case, not as a person. That used to be disconcerting, I guess, is the word. You don't feel comfortable in a setting like that, because they're discussing you like you were a specimen. I understand the purposes of teaching, but in those days, I think especially, they had very little--some doctors were extremely nice and kind people, but during rounds and all, you're a diagnosis, you're a condition, and that's how it was presented, so that would be difficult.
Whenever I went to clinic I was always a wreck that they would want to put me back in the hospital, and I didn't like being in the hospital. You adjust and you make friends and everything. It's very boring in the hospital. At any rate, I would always be nervous if we had to go to the clinic. I was a wreck. When they were deciding--I went in once for a two-week period to see if I needed spinal fusion, and they put a cast on me, and I guess they felt I didn't need it then. Then I went home. The next year they said I needed it.
I guess some of the worst experiences for me--they were going to make a decision, I guess, what they needed to do. There was this one very big Texan, a doctor. When I went in I had my underpants on. He didn't say anything to me. He grabbed me by the throat, and he just held me, suspended me in the air, and he's pointing out my scoliosis. That was a pretty horrible experience. He had the bedside manner of Attila the Hun. So when I went back in to have the surgery, the way they did it when I was having my cast put on, they put a piece of leather that went around your head, and it would hold you, and they hung you, but they really didn't explain all of this.
I was very close to my mom, so that was always wrenching to me, having to be separated and everything. Every day I was supposed to have the cast put on. So what day do they decide they're doing it? The day that the visiting hours are held, so I didn't
Jacobson
Wow!
McQuade
Yes, it was quite an experience. And then when you get your cast put on--I don't know if you've ever had a cast--
Jacobson
I have.
McQuade
This was plaster. First it's warm, and then it gets very, very cold and damp and until it dries you really are in this yucky cold sort of semi-wet thing. The first night with that, and really for a couple of days afterwards, it hurts because you can't move your leg. So until your leg gets used to being immobile, your hip is hurting you.You know, if you're laying in bed, you want to move and you couldn't move. So that was pretty awful. I had some very nice doctors though. I had Doctor Branigan, I remember. He--when the surgery had to be redone--when you tell a child you're coming home, this is what's going to happen, it's like, "That's what you said. That's what should happen." There's no, "Well, it didn't quite work out," to a child. [laughter] You're not interested. It's, "You promised. Now you're telling me something different," and it's not happy news. I remember him drawing the spinal column and explaining what happened, and I was crying away and I said, "But you said--" and he clearly felt bad.
There were doctors that were really nice. I think the nursing staff generally was extremely nice to us all. I'm better about going to see doctors now, but for a very long time I really didn't like going to see doctors. It always made me nervous. I guess that would be it, because it always meant being separated from your family and all.
Parents' attitude toward disability, home instruction
JacobsonWhat about your parents?
McQuade
My parents? What was good is that they had expectations for me. I think if they had fears, or what was going to happen to me and everything--it wasn't that it was said to me, "Oh, you can't do this." They were clearly--and I'm sure you met them--people who in their families it's like, "You're disabled. You have enough to deal with. You shouldn't have to do anything else because you're disabled." I would say with my parents, when I was very little, it was more like my mom, because my mom was a homemaker, so she was with all of us. There were some unhappy moments, but it was like, I played on the street. I couldn't do stairs, not because physically I wouldn't have been unable to do it. When you're wearing a full body brace, they taught you to do what they call a jackknife: you put your hand on the railing, you put your crutch, and you lift your body and you pivot your hips back and you swing your legs back, because you can't bend your knees. Some people learn to go up forward. I couldn't go forward. But I have a fear of being on the edge of something. It was pre-becoming disabled, because I remember being down in the subway and never having to be told, "Don't stand near the edge." I was always
I was on home instruction when I first came home. Some of the funny things. When I left the hospital, I was in the second grade. When I got home, they [The Board of Education] provided home instruction, and the teacher felt I wasn't advanced enough to be in the second grade, so she had me pasting pictures, cutting things out of magazines, and my parents would argue. My father would say, "What is she doing? Why is this kid cutting things out of magazines? What is she learning?" My mother would say, "Well, she's the teacher. She should know better." So there would be those kinds of arguments. Though that first year, I didn't learn very much.
Then I was fortunate. I got really good teachers, and I really learned a lot. You're getting five hours of schooling a week. I remember I had one teacher--I liked history. I liked stories and all of that. But when I first started reading, I would throw in articles of different words, and one of my teachers taught at a yeshiva at night. He scared me, because when I would read something that wasn't there, like add an article, he would yell at me, and I was terrified of the guy, but I think he frightened me into reading better. Some of this is funny stuff. Of course, he's working in the day and at night and he'd sometimes fall asleep during a lesson, and I'd say to my mother, [whisper] "Don't wake him!" [laughter] when she would walk into the kitchen where I had my lessons.
Then I had a teacher--one was a daughter of the American Revolution and she loved history. I liked history. She didn't like the public school books; she'd have my mother get Catholic school history books. So we had history. Then I had art. I have no art abilities, but I learned to make little things. I was terrible. I still am terrible at math. But I had a teacher, and she did flash cards, so I learned my multiplication tables and all of that.
Jacobson
The teachers were provided--
McQuade
By the public school system, yes.
Jacobson
Okay.
Attending public school and issues of accessibility
McQuadeThere was one point where they wanted to put me in public school. Wherever this neighborhood was my parents didn't like it and the school to me it was reminiscent of the hospital and I didn't want to go there. They had the kids taking naps in the afternoon on cots. When I actually went to school, it was high school--it was a health conservation class. If you couldn't go out to the rest of the classes like everyone else, if you couldn't leave your homeroom, all of your education was in this room. If you could go out to the classes like all the other high school students, that was your homeroom, and you just went to class.
Jacobson
What did you mean by if you couldn't go out?
Some of the kids, whether it was that they physically were unable to go to the other classes, or there were intellectual issues that they needed the one-to-one, some of us got all our education in the homeroom class, and some of us went out to classes. I'm going back. Like on home instruction, I did all of grade school on home instruction. That was an issue for me. I wanted to go to high school. I wanted to go to school. You're asking about my parents: this was a debate between my parents. My mother was supportive of me going to high school. My father--Catholic school was where everybody went. Public school was if you were failing in Catholic school, and it was not considered a good thing to be going to public school. My father was afraid people would maltreat me. Public school had a bad reputation. My mother was very supportive. And what had been happening physically, the Visiting Nurses Service sent PTs to give me physical therapy. My mother learned to do physical therapy and put my brace on, and then as I got older I did it myself.
But, they [the PTs] were trying to teach me how to do the stairs, and they were trying for years. This was in the hospital in rehab. They used to teach you to fall on a mat, and then pick yourself up. Because I had this fear of being on the edge and falling, they had to kick the crutches from underneath me. I couldn't let go and just fall. I just couldn't do it. We'd spend hours on the stairs with my hand taped to the stairs, trying to get me to swing off the step, and I was afraid of falling. So what one visiting physical therapist got the bright idea to do, was, we call it desensitization in psychology. We bumped down and we worked our way up. Now, I had fourteen steps, this was the first flight, then another fourteen steps. So if you're afraid of being on the edge of something and afraid of falling--it's not heights, I don't get dizzy, it's fear of falling down I guess--this is really tough stuff. So we worked our way up, and finally I went and could swing off the top. Every once in a while this fear would come back, even years later, and I'd be like standing there, and I'd have to like talk myself to swing off that first top step.
But when I was able to do the stairs, then I could go to the bus. The bus had a lift for the wheelchair, but you had to be outside; they didn't come upstairs to take you down.
Jacobson
Why couldn't you go to parochial school?
McQuade
Inaccessible, inaccessible. That's basically it. The church was inaccessible. The school was inaccessible. As you know, the public schools were not accessible. You had certain schools with segregated classes. Especially grade school, it was all segregated. There was no such thing as integration or mainstream or whatever you want to call it. High school--this is also interesting--you had to be self-sufficient. You had to be able to take care of yourself in the bathroom and so forth. You were about fourteen when you're going into--I was about fourteen because I was held back that one year--and you had to be interviewed by the principal to see if they would accept you. There were very few schools, and they still have the right at this point to refuse to accept you.
Jacobson
Which schools?
McQuade
I went to--it doesn't exist under this name anymore--it was Eli Whitney Vocational High School. I knew I wanted to go to college, but there were only certain schools that you could go to in your area, and they still could refuse to take you. So when I went, I remember being mortified when the principal asked me if I could take care of myself in the toilet. At that time, you didn't have these discussions with older men. That was kind
My high school experience was basically integrated. The interesting thing, like when we talk integration and mainstream--I equate this with integration of black people--it's sort of if you could put them in the same school, but the kids in your homeroom are basically the kids you socialize with, so even though you could have sat with anyone, all the disabled kids sat together, not because people wouldn't sit with you, but because these were your friends; you got to know each other.
I was in other classes, and I made friends with other people, but my closest friends were all disabled because those are the ones you got together with in the morning, and some of you are on the same bus, so we all ate together. Even though we were in an integrated lunch room and all, we all ate together.
I'm going to go back for a second with my parents. The really good thing, I think, is that they rarely treated me differently than my sisters. Every once in a while they would try to give me preferential treatment. We were always fighting. When you have three, it tends to be two against one, and sometimes you're the one, and sometimes you're part of the two. So, I remember one occasion we were fighting about a TV program, and my mother said, "Oh, let your sister watch what she wants; she's handicapped." All of us turned in unison and said, "What does that have to do with anything?" But in general--and "handicapped" was the preferred term to "crippled" back then. In general though, what things I could do, we did as a family. Now there would be activities where I would be left out. If you had to travel by subway--my parents didn't drive--then I wouldn't be able to do it.
But I remember one time, and I think this is a good thing to relate to people, I played on the street. You grew up in the Bronx; I grew up in Brooklyn. You went down; you played on the street. You sat on your stoop; you played on the street. Other places don't understand stoops, if you're not from the city. So, we would play on the street with the other kids. Sometimes the kids would take turns riding in my wheelchair. Sometimes we played hide-and-seek. We basically played on our block, until my sisters reached a certain age. They weren't allowed to cross the street by themselves. So you stayed on one block, and maybe you'd go to the other side of the block, but you basically didn't cross the street.
So there was a party. Some of the girls that we played with, they were having a birthday party, and I knew this, but I wasn't invited. The night of the party I kept waiting to see if I was going to get invited, and the night of the party--the party rolls around, no invitation. So I'm upstairs--I was about eight years old--and I'm crying. My mother said, "Well, I'll take you to the movies." "I don't want to go to the movies. I wanted to go to a party. Why wasn't I invited?" and I'm crying. My mother said to me, "Denise, you have to make your own way in this world. People are not going to not do things because you can't do it. You have to find your own way. The world won't stop for you." I wasn't happy to be told this [laughter], but it was a good lesson, especially in the time when she was saying this. This was the 1950s.
Now I know my mother--she would never admit this--but I know she went to the mother of the child who was having the party and asked that I be invited, because my mother came up and she said, "Oh, you were invited. You just have to put your dress on and we'll go." We put little dresses on then, if you remember the fluffy slips and everything. I said, "No, you went and asked her. I don't want to go. You asked her," and she said, "No, I didn't. They did want you to come," so the desire to be at this party won out over pride.
I went to the party. But it wasn't meanness on the part of the kids, because we played on the street. But it was like, because everyone else was in a certain circle, these would be kids, they all went to the same school. Everybody went to Saint Anthony's; that was our parish. Kids played together, and you wouldn't be part of their consciousness to be invited to this party. Again, they're up a flight of stairs--two flights of stairs--so I had to be carried. So people--it's like, if you're not totally in the circle like on the street, it didn't matter--you were just running around on the street and everything. So there were things like that where you weren't part of everything.
Deciding to attend church, constraints on social life, personal expectations for the future, influential teachers
McQuadeFor example, there would be the Catholic Youth Organizations. Synagogues probably have the same thing. They had dances then, so kids, they would reach a certain age, they would go to dances. There would be parish activities or sports or something. All inaccessible. Even the church was inaccessible, because I would receive communion and all of that at home. I didn't really go to church unless I was in the hospital, which was a Catholic hospital or until I could do stairs, because there were tons of stairs at this church.
Jacobson
Were you just using a wheelchair?
McQuade
Always used a wheelchair. Even with my braces, I never could walk that far. What finally I decided, with the church, I said, "I really want to go to church. I'm able to do stairs. I should be able to walk those stairs, too." And then there were some steps without a railing, which my sisters and my mother would pull me up. I started to go to church somewhere when I went to high school. I said, "You know, if I'm able to do these stairs, I can do that," and then I started to go to church. Prior to that, we made--you know how you have bar mitzvahs? We have confirmation around the same time. So I was confirmed and all of that. That's where having a disability--you were part of things where you could be, but you're also separated from some things.
Some of the things that I noticed when I learned to drive: I have a lousy sense of direction, and all of my sisters and myself, we have this problem with our lefts and rights. Like we say, "Go right," and we're pointing left. We all do it. Your husband will say to you, "Do you really mean left? Or do you mean right?" Something is not wired properly. But my sisters actually have pretty good senses of direction, except for the left and right thing. So one of the things I learned--I was being pushed everywhere, no curb cuts; they did not exist in our neighborhood. Everything had to be walked to.
With my girlfriends, movies were a big thing. That was what you did on afternoons, like Sunday afternoon or Saturdays or whatever when it wasn't a school night. We would go up to the movies or you'd go to the local greasy spoon. I would participate in those things, but I didn't go to dances. Again, this constrains your social life because going to dances, aside from being on the stoop and talking to boys, you meet boys at dances or went to school with them. In that sense, your social life--you would be doing those things at a later stage than your peers in many cases. I mean, you're interested in boys, but your ability to meet boys was constrained. When I went to high school, I met some boys. But, of course, who do you like when you're in high school? You like the seniors. The freshmen are geeks. You're probably a geek too, but you just don't see yourself that way.
In high school, I would talk to some of the boys, like the senior boys. This is both a pathetic story and a funny story, in retrospect. Some of these people, you remember the names? Angela Thompson. When I went to high school, Angela Thompson was a senior; that's where I first met Angela. A woman by the name of Edmee Rodriguez, who I later on connected with, she later on became president of our board of directors at the center. She was a senior. We were not as friendly. I became really friendly with Angela, and we maintained our relationship after she graduated. There were two boys that I was friendly with. One of them I kept up with after he graduated. They were all seniors. And one, we lost contact. Then there are the girls that were my peers that we stayed friendly for a time. But I went to college; they didn't. After, I don't know what happened to them, but this was the thing about in terms of my parents having some--I never got the sense from my parents that I wasn't going to have to go out and earn a living and make my way in the world. Other kids, that wasn't communicated.
There was a girl that I knew from the hospital who was in our class who was bright. She had juvenile arthritis. She should have gone to college. She graduated high school; she was home. That was her life. That was going to be her life. Some of these other girls, I don't know what happened to them, but there wasn't an expectation to go on.
Jacobson
What did you think about it at the time?
McQuade
About them not going on?
Jacobson
Yes.
McQuade
I thought it was a terrible waste. I thought, this is really horrible that this is going to be your life, and this is what you think your life should be. For me, I didn't have big dreams. I didn't think I was going to run a major corporation. In my social milieu, girls either graduate from high school and went to work, or you went on to college and then you went to work. The expectation was you would work; you would get married; you would have children.
For my personal expectation, I figured I would stay home for a time until the children--daycare was not a known thing. There was kindergarten; there wasn't daycare. I figured when they were old enough to go to school, I would probably go back to work and whether I'd work full-time or part-time, I had no idea. But I had my life sort of planned out. Around twenty-five, I would meet Mr. Right and then I would get married and have children and the whole nine yards.
So at any rate, I think where I was very fortunate is that if my parents had doubts or questions, they didn't share those negative concerns with me. My mother was very practical. Because we were women, you more or less talked things over with your mother. Some things you talked over with your father. But, if I had ideas--like, I used to be interested in Egypt, so I thought I wanted to be an archaeologist. This is not exactly a practical career choice. [laughter] Wheelchairs on sand is not too cool. Even though they have the big tires now. So at any rate, my mother would say, "Well Denise, archaeologists have to be able to travel. They have to be able to go on digs. How would you do all these things?" She wouldn't say, "You can't do it." She would just say, "How would you do this? This is what this requires you to do." Then another time I thought I wanted to be a reporter, and she said, "Yes, but you have to go to all these places. They have stairs." I mean, access was just a pipe dream in many cases.
So, in a sense, it made me think about things, and I knew--it's like, some of my career choices, some might not have been the wisest choice, but at the moment, I also knew I needed a car. Transportation is--it's ironic in some ways that I ended up working in transit, but transit was one of the major, major issues for those of us with physical disabilities. And that for me, it made me make certain decisions. Because when I was graduating from high school, I surprisingly--this is really funny--not funny "haha," but like a concern. I was on home instruction. I wanted to go high school, but I was afraid I would be laughed at. I was afraid I was going to be stupid, that the other kids would be more advanced than I was because they went to school. When I went to school, that wasn't the case. I'm not a genius by any means. I know you get tested by DVR [Division Vocational Rehabilitation now known as VESID] if you want to go to college and all of that. I have no idea how high I tested, but I tested well enough that they would fund me for college.
So at any rate, I was really nervous. When I went to school, I was fine. On home instruction, I had a really very fine teacher. This guy--in high school one of the teacher's was named Greenberg. On home instruction I had Mr. Greenfield. It was really interesting, because my parents are conservative. He was a liberal. So there would be interesting discussions. I'm a moderate to this day, but in comparison to my parents, I'm like a Red. So we would have interesting discussions. He was a definite liberal. He tried to teach me algebra. It just didn't get through to me. My question was, "But why do you do the same to this side as you do to the other?" It just didn't compute. When I got to high school, of course, I had to take algebra, and I was like, "Oh God," but somehow it clicked. I met him one day. He was coming to the school. I guess there must have been another student he was visiting and I met him and I said, "Mr. Greenfield, you'll never believe this, but I'm doing good in algebra." He was laughing. I said, "It just clicked."
The other thing that was good--I know I'm jumping all over the place--but there were good experiences with the teachers I had, because they were so dedicated. If he had a cancellation, he would come. I wouldn't say I always appreciated him coming, because it was just like, "Oh no, I already had the school. I don't need another hour!" But it was like he was really dedicated. I had a number of teachers that were like that. So he would give me extra time. When I did get the good teachers, I guess I had enough [of them] that I wasn't behind when I got to school. Of course, it's a vocational school, so the academic standards in public school were lower--sixty-five was passing; in Catholic school it was seventy-five.
Class president, the prom, class valedictorian
McQuadeSo at any rate, with the whole high school experience, they didn't have dances. They were kind of unique in that seniors, they had one day. It was like Senior Day, and they got dressed up in costumes. I got elected. I knew people in school, because I was in the regular classes, and I was asked to run, I think, for school president. The school is largely black and Hispanic, so I ran against somebody whose last name--a black guy whose last name was Washington, and I think it was Jesus something--I think that was his first name, a Spanish guy and a black guy. I really got into the campaign, so I made flowers. My sisters and I made paper flowers out of--they even taught me one time how to make flowers out of tissue, so I came in. I had little flowers with "Vote for Denise" and paper tags on them. I just went all over the school. I think the flowers probably did it. I won the election for president of the student body.
Jacobson
How big was the school?
McQuade
It was pretty big. There were several hundred of us that graduated. The auditorium seemed pretty full when we were there, but of course, that would be the parents and everybody. At any rate, here we are, and they decide this year--there's a student body. I couldn't participate in any kind of--not that I was a sportsperson--but I couldn't go to anything after hours, like any of the clubs, the extracurricular, that required transportation, because the bus came, you had to leave. I believe they still do that. So I was on the school newspaper, because I could do that on my lunch hour, if I had to interview somebody or write an article or whatever. That was the extracurricular activity.
They decided they wanted to have a school dance, a prom. I said, "But the kids in this school are not that well-to-do; it's going to be very expensive." But also, to be totally honest, I really felt like, "Oh my God, I'm going to have to get a date." I wasn't dating anybody. So part of it--there was an ulterior thing, but democracy ruled; we were going to have a dance. I had a choice. Many of the guys I knew had graduated, and the guys who were in our school you didn't want to date; I didn't want to date them. I'm not saying they wanted to date me, but these were not guys that you would want to date. Everybody in my homeroom, all my peers, girls, everybody had a date. I'm the only one without a date, so I wasn't going to go. Then I'm told because I'm president of the class, I'm expected to go, and I have to give a speech. Well, I'm terrified of giving a speech, and I'm mortified to have to go to a dance without a boy. My mother's saying, "Well, you can ask one of your cousins." I said, "I am not going with my cousin. If I don't have a date, I'm not going to fake it and drag a cousin along," so I begged my sister Ginny to come with me. I just couldn't face it alone. I said, "I just can't be there all on my own. The only girl at a table. The only wallflower. Everybody else with a date."
Well, it turned out worse than this. We get to the prom. No one's date shows up. It is a table of disabled girls, no dates. This is more mortifying to me than if I was the only girl without a date there with my sister! I'm sitting there thinking, oh my God, I can't believe this. Everybody was dressed really nicely. We didn't wear long gowns. They wore shorter dresses then. This was like '66. So the moment comes for me to give my big speech. I had written a paragraph. I'm shaking. I couldn't stop shaking. So they throw the mic, and I'm going to give the speech, and the principal says, "Thank you
Jacobson
Why didn't the mic work?
McQuade
Something went wrong with the mic. It was just some kind of foul up; I don't know. I said to my sister, "I can't believe this. I can't believe my luck that I have to sit here mortified with a table of girls. Nobody's date has shown up. We're all disabled, and everybody has to think, oh those poor disabled girls who couldn't get dates. This was my prom experience. [laughing]
I had the highest grades. We had regents, which they're bringing back now. I was valedictorian of my class. If I was in Catholic school, I would have been in the top ten, but I wouldn't have been valedictorian, because you had to have higher grades. But I was valedictorian. So that was another agonizing experience, having to work on speeches. I seem to have a big mouth for everything other than giving speeches, because it was like the woman was saying, "You have to speak louder." They went over your speech. You had to make sure you were writing so that the people in the audience would understand. I had something like, "The phoenix rising," some crap like that. They took that out, because no one else was going to know "phoenixes rising" in our school. It went better. The mic worked, but I was very nervous. At that age, you're a wreck anyway. It's just nerve-racking to have to speak in front of people. That was some of the high school experiences. Generally it was good. I had friends. I really had very good friends in my homeroom. But it was sad to think--not every one of those girls would--because we were mainly girls graduating in my year. I don't know if we had any boys graduating.
Jacobson
What year?
McQuade
Sixty-six. Some of the girls probably, if they weren't disabled, wouldn't have gone to college, but they would have gone to work. They would have done something. That was kind of the sad thing to me, that so many of these girls, it was like there wasn't going to be anything else for them. That was the highlight of your life rather than the beginning of your life. That was kind of sad. I wasn't at that point where I thought about changing the world. I thought about making my way in the world, but not changing the world.
Jacobson
What college?
McQuade
My first college, this is where the transportation comes in. Usually people had a lot of fights with what was then DVR. It's VESID in our state, but then it was DVR.
Jacobson
DVR?
McQuade
DVR, Division of Vocational Rehabilitation, which they changed to Office of Vocational Rehabilitation, OVR. Senior year, or the junior year, you met with a counselor, and they would talk with you about what you wanted to do. I said I wanted to go to college. My counselor wanted me to go for four years. I wanted to go for two years, because I wanted to get a car. We were talking about--I think if my counselor
Attending New York City Community College
McQuadeI went to what was then called New York City Community College, Jay and Pearl Streets, downtown Brooklyn. It's now called New York City Technical College; it's a four-year college now. When I went, you got your liberal arts kinds of things, and you had your major which for me was legal secretarial. Angela Thompson was at LIU [Long Island University]. Judy may have been at the same time. Professor Childs--actually, when Angela was there, it wasn't that accessible. I think maybe Judy came after Angela graduated or as she was graduating, because Angela had to have her wheelchair carried upstairs, and she would walk up those stairs.
Jacobson
What was her disability?
McQuade
She had cerebral palsy, no speech impediment, but she had cerebral palsy and walking was very difficult. But she walked those stairs, or people carried her up. She was a communications major. I don't know if you remember her? She was very, very nice.
Jacobson
I do.
McQuade
She was very nice. We kept in touch. So she was going to college. I forget if she went out to California then. She ended up--I shouldn't say she ended up--she worked for a time for, I think it was Fairchild. She was in marketing. Then, for a time, she worked for NBC. Or it was the reverse. But she was usually in communications and marketing, and that had been her major. She was a very good speaker and very personable. I remember the difficulties of getting around that campus, so I expect Professor Childs--he may have been there, but I suspect his big effort to make that campus more accessible was the tail end of her schooling, and when Judy was there.
How I got involved with the movement, it's really through Angela. I went to my college, which was basically accessible. Not totally, but basically. We were in this dumpy building that had holes in the floors. The building we went to, it was on Flatbush Avenue Extension. I think it was an old factory, maybe a clothes factory. I went into the building through the service elevator, as we all have used service elevators. They would take garbage off, and the rats would run off, and I would go on. I was being transported. Again, it's like why we have the requirements we have on paratransits, is everyone's experience with these private companies, these ambulettes. That's glorifying them to call them ambulettes. They put you on--they had two doors tied together, or with a hinge. That was your ramp. They tied you with ropes, and you were packed in. So you'd
I went for one year; I think it was there, and then they moved us to the new campus, which was on Jay and Pearl Streets. You registered over there, but our whole department, I think, was over in that school for a time, and then they moved us over. Maybe it was our last year or whatever, because I graduated in '68. It was great. I met really good friends. Not everybody you kept in touch with, but one friend I kept in touch with to this day. She lives in Montana now. She married a cowboy. It was fun. You met new people, learned things. It was also a lot harder than high school. Let's put it that way. That was a good experience.
Confronting prejudice, a high school incident with lack of accessible transportation
McQuadeThe transportation part of it was not so good, because you would sometimes be waiting there for two hours, and the vehicle wouldn't come and you'd be calling. That was less than thrilling. Graduating, that was fine. Looking for a job was not so fine. This is pre any laws that protected people with disabilities in our city or in our state. It was an eye-opening experience, because you're basically raised with this idea we're all equal, and democracy, and everybody gets--if you work hard, and you have the skills and abilities, then you get the job. I mean, I knew certainly there was racism, because the civil rights movement was really flourishing then, through the sixties and all. I still believed as long as I had the skills that was the other reason too for wanting to go to college I knew I needed an edge. The disability was going to be a reality that some people were going to have difficulties with. I just didn't know how difficult their difficulties would be.
Jacobson
When did you become aware of that?
McQuade
Growing up--it's funny because it's different from Judy's [Heumann] experience. Judy went to Camp Gened. That has certain advantages. You know how there are mountain people and there are shore people? We were shore people. I had an aunt who had a house in Sag Harbor, so we went out to my aunt's house. My father had two weeks vacation. We all went out for two weeks to the country, and we went swimming and all.
I never wanted to go to disabled camp. I always felt like I want to be with people I know. Not just that I'm disabled, and I go to this special camp. It never appealed to me. I kind of felt like I should be able to go with whomever I want to go. The advantage, though, of Judy's experience as opposed to mine is that you got to do maybe in some ways more things, because they made things accessible, in a constrained environment, but you got to do more activities than maybe I would have done. We went clamming. We went fishing. We went swimming. That kind of stuff. But you had to be carried because things weren't accessible. I knew there were times when I would be left out of some things, because, like for example--my mother didn't drive, so if you wanted to go to the beach, you had to walk to the beach. It was too long a walk to do it in a wheelchair, except for this local little beach, which we didn't like as much. It was more
But, when I went to high school, I felt it was unfair that the transportation didn't allow me to do the extracurricular activities that I might have chosen if I had more choices. One time, the bus operators went on strike, well, they were doing slowdowns, and we had been kept waiting for hours this one time. I just felt it was really unfair that we, who didn't have choices--like we couldn't just say, "I'll go take the bus home." So when the bus came, I remember Mr. Greenberg was waiting, and I said, "I'm not going. They kept us waiting; they can wait for me." [laughter] He said, "Denise, please, you have to go to the bus." So he went to pull my wheelchair, and I had my braces, so I locked my knees and I just stood up and I said, "I'm not going," and he says--
On a highly developed sense of fairness, hierarchy of disability, first job hunting experience
McQuadeI think the shortest way of saying it is I always had a highly developed sense of fairness, what's just, what's unjust. That's the kind of thing that will make me do something if I really feel something is horribly unfair.
Jacobson
Where did you pick it up?
McQuade
God knows. I don't know. I've always had that. It's one of those things. I mean, there's how active I became. There's a lot of different things that happened and influences, and I guess meeting other people, seeing that it wasn't just me. If it's just me, I'll do a certain amount if it means something to me. But when you see that it's a group, you realize that there's power in that group if you all work together on something. What happened in terms of seeing it as--it's a conscious-raising thing, and what happened was part of it was my job-hunting experience, and for me, it wasn't any way near as bad it was for many people, because I was able to communicate. Let's face it, if you have a severe physical disability, a speech impediment, a lot of times people presumed back then--some people presume it now--the expectations for you are low. So if you come in, and you surprise the person by sounding semi-intelligent, you've already established something that they weren't expecting necessarily. So, I was able to verbalize.
When you study things about what disabilities are the most frightening to people, blindness is like right up there. That's a biggie. I didn't know until I talked one time to Bobbi Linn that there was a hierarchy within the disability community of disability. You know what I mean? It's like it never mattered to me. You might see somebody like--two of my classmates were congenital amputees. The first time I saw them it threw me, because it's like the gestalt that you expect isn't there. At first it's like, "Oh my God, I don't want to stare," you know, and then once you got to know the person you forgot that they didn't have long arms. I never realized there was some kind of hierarchy. I didn't know that paras were at the top of the physical disability hierarchy, and you go down. I guess in a way when I encountered people who had speech impediments, I felt
Jacobson
I think it was me.
McQuade
Do you think so? I couldn't remember who, but I remember from that moment on, then I would just say, "You'll have to repeat it." Or if it was so difficult I'd say, "Okay, let's try this." Because sometimes I talked to people when I worked at the center [Brooklyn Center for Independent living formerly Independent Living for the Handicapped], I couldn't decipher the speech. Whether it's a combination of me and them or them, who knows. But I would say, "Alright, what I'm going to say, we're going to do yes or no, and you're going to indicate the things." Especially when you're trying to find out like "What do you want to do? Why are you here? What do you really want out of this?" So at any rate, I really didn't realize that when I went out looking for a job, some places I didn't get beyond the reception area.
I remember one man came out and he said to me--he walked out. My sister had come with me, because I had to take taxis. I had to pay ten dollars, which was a huge amount of money back then, especially when you're not working. I showed him my resume. You would bring your folder with some of the legal documents you did. Everyone's out looking for a job. All the nondisabled students and those of us with disabilities. He said, "This is very nice, but you really wouldn't work out here. There's not enough room." I was too shy, too nonassertive to say, "Show me. Let me see what we could work out." I was like a marshmallow. I was biting back the tears. It was all I could do not to just start blubbering in the office.
I went on another interview, and they tested you. You could be very nervous. You have to take a typing test and a steno test, and they said I would hear within a certain amount of time. Two of my classmates--I was a solid B student in the secretarial stuff--the legal secretarial--they were like C students. English was not their first language. I'm not saying they were unintelligent, but it was like it was just where we were falling out. We took the test, didn't hear anything. Finally I just called. I said, "You know, I was supposed to hear from you as to how I did." She said, "Oh, we hired two other people." I said, "Oh." I figured that I was too nervous.I didn't do well, whatever. She said, "But I don't want you to think it's because you're disabled." Maybe it wasn't. Maybe she just felt she needed to say that so that I wouldn't feel bad, but it sort of struck me that I wonder if it is because I'm disabled.
I was depressed, and I started to feel, "Oh my God, what's going to happen if they won't even give me a chance because I'm using a wheelchair?" That was the other thing. I wheeled into one office down in the Wall Street area. They had two-inch carpets, so I'm leaving tracks. You can see by their faces that they've never seen anyone in a wheelchair, never in their life. They're looking at the tracks, and I'm pushing down the carpeting. I encountered things like that, so I finally went to our student advisor.
They didn't have a disabled--I know that's a question--they didn't have a disabled students' office there that I remember. I went to our student advisor, and I said, "Look,
Working as a secretary, 1968, story about job search with CIA
McQuadeI started working summer, 1968. I had to pay for my transportation, so that cost me--I came home with eighty-five, thirty-five of it went to transportation. I was living at home, and that's the only place I could have lived, because I couldn't have eaten if I had to pay rent [laughter]. I was taking the car service, and I was saving money to get a down payment on a second-hand car, and OVR, DVR--whatever it was called then--was giving me driving lessons. This was kind of interesting. I started to work. You know, first you're very nervous and you make some mistakes and everything. But every mistake is like, "Oh my God, they're going to fire me." It's things that happen. You have no sense of what to expect. I made friends and everything. The secretaries on Fridays, we would go out. There was a Schrafts, so we would all go out for burgers. That was our payday. We got paid every two weeks. On Fridays, that was our day to party, so we would go out for burgers and all of us would eat together and everything. There were secretaries from other places, and we would get together.
I remember one time--I forget if I was working there six months or a year or what--but after you're working a while, then you start to gripe. There's always something that people are unhappy about, and lawyers are not the best people to work for. There were definite roles and sexism. I don't mean like people manhandling you or anything.
Jacobson
It was private?
McQuade
Oh yes, a private law firm, yes. It was like clients would come in, we got them tea or coffee. I would get it ready, but I couldn't carry a tray, so another secretary would carry the tray, but I would set up the coffee tray and get them coffee. We're secretaries, but we're also coffee-getters. It was like that. We all sat outside our boss' doors. We were coming back from lunch this one day, and I forget what we were talking about, and this one secretary who I was friendly with said, "No matter how bad they are, I'll always think well of them for hiring you," and I said, "What am I, chopped liver?" I said, "I do my job. I do appreciate that they gave me a chance, but I'm not a charity case. I'm doing the same work everybody else is doing here." I felt really insulted. It's like--you know my husband is nondisabled. I always say to him, "I'm telling you, you're like Saint Larry. Look at that guy. He married that poor wretch in a wheelchair." [laughter]
Jacobson
There was that mentality.
People, they really felt like, what a wonderful thing to do. On the other side of the coin, there were so many places that wouldn't give me the chance. They took a chance. They were more liberal. But I felt that once I proved myself then I'm like everybody else.
Jacobson
What year was this?
McQuade
This would have been 1968. I was hired by them in the midsummer. We graduated in May. It might have been June. I forget if it was June or July. I have another funny story to tell you. This is what an idiot I was, too. People would come to the school who wanted to hire people. There was a guy there from the CIA, and he was talking about opportunities with the government and all of this. I said, "Do they hire people with disabilities?" He said, "Yes, we have people who are blind. We do hire people with disabilities," so when things are going so disastrously on my job hunting, I sent my resume and indicated that I was interested in having an interview.
I have an interview. In fact, we were looking for jobs as we were about to graduate. You didn't just wait until you graduated. We were looking for jobs in the spring before May, so I had sent my resume. The work seemed exciting. James Bond was probably big then or something. There were a lot of spy things in the movies and all, so it seemed like adventure.
At any rate, I had this interview. I had graduated and I started thinking about--I wasn't against the war in Vietnam yet. I was still believing, you know, the domino theory, and we were helping people to defend themselves. But I was starting to have questions, and I'm thinking he told us if you betrayed anything it was a ten thousand dollar fine and prison. I'm thinking to myself, knowing how I am, what if I start to feel something's wrong? So I thought, maybe this isn't the best place for me to look for a job in case I was in a position where I felt something was wrong and felt I should do something about it.
I called to cancel my interview. They had things called tie lines, and it was like you dialed a regular number and it would connect you somewhere else. Somehow, I didn't understand. Maybe I didn't dial an area code, something I did wrong. I'm calling, and I get connected to some place that says they're a shoe factory in New Jersey. I'm thinking, CIA, this is ridiculous. Shoe factory in New Jersey, what a cover. So I'm saying, "No, no, no. I said my name is Denise McQuade. I have an interview with Mr. So-and-so." He says, "Miss, this is a shoe factory in New Jersey." I hang up. I dial again. I get the shoe factory in New Jersey. He says, "Miss, this is a shoe factory." I say, "Come on, it's really okay to tell me." [laughter] "I'm supposed to come there for an interview, it's all right." I call back a third time. "I told you, this is a shoe factory in New Jersey! Stop calling!" So I write this incensed letter to the CIA basically criticizing them for having this ridiculous cover. I get this letter back. I'm lucky I wasn't thrown in prison. It's like, "I'm sorry about your experience." I realize what a buffy I was that I had totally--I should have done something with the number. I still don't remember what I did wrong, but it really was a shoe factory in New Jersey. They must have laughed their heads off. "What a buffoon this woman is!" That was how desperate I was at that point. Then I went on that interview and did get the job.
Two conferences on disability at Long Island University, meeting with Judy Heumann, the beginning of Disabled in Action [DIA]
McQuadeThat sort of clued me in to [the fact that] all wasn't fair in the world if you had a disability. Then there was an urban conference at LIU [Long Island University]. Angela Thompson said "Why don't you come, because one of the topics they're discussing"--they would have been discussing racism, maybe--I don't know if the women's movement was like a topic then--"and they're discussing disability." Long Island University, urban studies.
Jacobson
That was the same year?
McQuade
That was in '69, so I was working a year, or almost a year. It was the wintertime, but I don't know if it was winter in the new year. It had to be the new year. It may have been before you hit spring. At any rate, I went to that conference, and I just listened, didn't say anything, just listened. There was another conference in 1970. Judy was there.
Jacobson
What were they saying at the urban--?
McQuade
People were talking about discrimination. People were sharing their experiences. They were talking about some of the inequities in education and employment, in transportation and housing. I think they were just talking about all the different things that were barriers to people with disabilities.
I was at the one that just dealt with disability, and I was listening. We went back in 1970. There was another conference. Professor Childs, I think, had organized this part of it. Judy was one of the--either a speaker or a moderator--I think she was speaker. People were talking. Again, I'm listening, and I'm realizing everyone said this last year. I spoke up and I said, "You know, I was here last year and people basically said the same things. There's a lot of us--." These may not be the exact words, but I remember saying some--I know I said this. I said, "We need to get more militant. We need to take action rather than just talking about it."
Before I did this stuff, one of the things I had found was a problem in terms of having a disability was we couldn't use mass transit--this was an individual thing--I felt we should get a tax credit for the cost of our transportation, all of us, because either we had to provide our own or we had to pay for it. If you were using an ambulette or something, you were talking like forty dollars, thirty-five dollars a trip, twenty-five dollars a trip, depending on where you were going. I went to see my congressman. He was an old-time congressman who had a lot of seniority but was pretty disinterested in what I was saying. I had a petition. I was standing out in front of my church with a petition to get people to sign that people with disabilities should get a tax credit. I was beginning to take some decisive steps to do something about some of the issues.
After I spoke up at the meeting, Judy came over to me, and she said, "I was interested in what you said," or "I agreed with what you said. Come back to my apartment with me." So we started talking. I forget if it was later on that year, she had taken the test to become a teacher and then they were discriminating against her. They said because she
The students at Long Island University sponsored a conference, not just for students. They sponsored a conference for people with disabilities. I forget if Angela told me about it or Judy told me about it, but a lot of different people went to the conference. Because of Judy's notoriety, celebrity, whatever you want to call it, there was going to be press. As it turned out, there was going to be press coverage that afternoon. We met and people talked about different issues. Then they asked the group to break up into groups, to pick what you wanted to work on, and you were to discuss how you wanted to approach these problems and come back with a report. This is just the irony of life.
Jacobson
Who said to come?
McQuade
It was sponsored by the disabled students organization on LIU's campus. I believe Judy was the moderator. I think it was Judy. There were other people. I'm trying to remember. Handicap--
Jacobson
Handicap Integration Movement.
McQuade
That might have been it. I don't know if that was the students. The first name for DIA [Disabled in Action] was Handicapped--
Jacobson
--In Action.
McQuade
Handicapped in Action, that's right. At any rate, we go break off into groups. I went with the legislative group. There was a woman--I think she was there with her husband. He was nondisabled, at least, physically nondisabled, and he was kind of a dominant personality, and because I took shorthand, I was taking the notes. When we came back in to the meeting and we were supposed to give our report, I was the only one who read the notes, so I became co-chair of the legislative committee. It's simply because I took the notes. This guy was leading, sort of, the group.
Jacobson
Do you remember [his name]?
McQuade
His last name was [Cotheintz?] His wife was Miriam [Cotheintz?] I don't think I could spell it. We came back in, and we gave our presentation. Everybody gave--there was an education committee. There was a housing committee. There was the legislation committee. I forget if there was a communication committee. There were various committees. We decided to form a group, Handicapped in Action. Two weeks later, I get a call from Judy and she said, "You know, someone mentioned that we shouldn't call ourselves handicapped. Anyone could have a handicap, but if you're disabled, it's a stronger word, and not everybody can be disabled." Like everybody wants to join the club, right? At any rate, she said, 'Dia' in Spanish means day and we could use it as a fund-raising thing." I swear to God. [laughter] I said, "That sounds fine. That's fine with me," so with that we became Disabled in Action. Well, Mr. Cotheintz said--I don't remember the first name, I remember the wife--calls me up and he says--
Jacobson
Was it [Al?]
God, it might [be], it might. He calls me up, and he's incensed. He wasn't called. I said, "I was called, but I really didn't come up with the idea. I think it's fine. It does make sense to me." But he was upset. I said, "You would have to speak to Judy, because everyone else seems to have liked this, but I didn't come up with this idea." They didn't stay involved.
Early agenda of DIA, early participants in DIA
McQuadeAnyway, from the LIU conference people with disabilities started meeting to discuss working and changing our world. People had heard about Judy's situation. Like Larry, my husband, had read about Judy's situation and was really incensed that somebody who was obviously qualified should be denied a job. He got in touch with Judy. A lot of it was people getting in touch with Judy over that lawsuit. It was a catalyst. So we started meeting. We were taking on the world. We were going to deal with transportation, education, employment, housing--
Jacobson
Who was meeting?
McQuade
Okay. Bobbi Linn. There was a woman who was our treasurer, Susan Marcus. She's now Susan Hays. She was from Long Island. Larry was the only nondisabled member.
Jacobson
Larry?
McQuade
Weissberger, that's my husband. I'm a second wife. He was married to somebody else back then. I met him--I don't know if you remember Ronnie Stier. There was no transportation, so those of us who had vehicles would pick up somebody if they needed a lift. We were meeting, basically in Brooklyn at anybody's house that was accessible. You must remember when we were trying to have borough DIA's to deal with the lack of transportation, we met at your house. Whoever had an accessible apartment or a house, people would go and meet. First, a lot of our meetings were in Brooklyn, then we went into Manhattan. When we did the borough thing, that was really Pat Figueroa's idea, and that was after Judy had gone to California. We tried to have little borough groups. A lot of the DIA people who are currently in DIA from Manhattan, they were the Manhattan borough group. I remember being president at the time when that came about. Then we went to the Bronx. A lot of our meetings were at Ronnie Stier's house or Judy Heumann's house, or wherever else we could meet in Brooklyn. Then a lot of the meetings took place at Judy's apartment at 175 Willoughby Street.
We were meeting. We were making plans. We would have worked on, at that time, the Flynn--no, that was 1975, that might have been later--but we wanted state legislation to protect people with disabilities. I know we worked on city legislation, because first the City Human Rights Law protected people with physical disabilities, then it was expanded to incorporate people with emotional disabilities, but first it was just protecting people with physical disabilities.
On housing, we always wanted to have accessible housing built. I can't tell you the different bills. Back then, housing, it was like a certain percentage of new construction
Jacobson
EPVA?
McQuade
Eastern Paralyzed Veteran's Association did a lot of work on the state building code. For some reason New York City has its own building code. So the state modified its building code, calling for adaptable housing. You would have reinforcements in the walls for grab bars in the shower or in the tub, to put grab bars behind the toilets. Doors would have to be thirty-two inches wide. Reinforcements for cabinets could be lowered. It wouldn't be that expensive to make the modifications if the tenant was disabled.
Working for accessible housing, the Mayor's Office for the Handicapped, a demonstration to make gasoline available for people with disabilities
McQuadeAs I was saying to you, Denise, the issues were those issues. The specific bills and things, I don't honestly remember. I know we worked on different types of legislation. We pushed to have something very concrete. We pushed to have a mayor's office for people with disabilities. It was originally called MOH, Mayor's Office for the Handicapped. The first director of that office was the late Eunice Fiorito. What that office worked on originally--Larry Allison was in that office. One of the big things they worked on, we were having the first gasoline crisis in the early seventies, and they actually overstepped their bounds because then they were restricted--they were not to participate in demonstrations and all. But Eunice was in the demonstration. Pat Figueroa was involved. DIA--I forget if--on Long Island there was ABC. I can't remember--
Jacobson
Architectural--
McQuade
Architectural Barriers Committee. So different groups had come together to work on having gas available everyday for people who were disabled and had to drive themselves or for those transporting them. So what happened with this one, I have the feeling it was '73, '74, it could have been '75, but we had a very successful demonstration. There must have been about seven hundred people walking up the Avenue of the Americas, Sixth Avenue. The transporters, the ambulette services, wanted the gas, so they transported people for free. Those of us who had transportation were transporting ourselves. We needed the gas, and we couldn't do the alternate days because you might run out of gas and it wasn't your day to get gas. As I've always maintained, if it's a bread and butter issue, people show up. If it doesn't have enough
Jacobson
ABC TV?
McQuade
ABC TV. There were loads of people there. We just marched up Sixth Avenue and then we picketed. Wherever we were picketing--I know it was near ABC, the television station--they eventually agreed to negotiate with us, the governor's people. Pat Figueroa, Julie Shore--I forget who the other people were--were the negotiating team. Eunice Fiorito was in that. The office was fairly new then. I know from that point on they were banned from being in demonstrations.
Demonstrating for the Rehab Act of 1973, picketing Jerry Lewis' telethon, a "hodgepodge" of activism
JacobsonDo you remember what year?
McQuade
I hope Pat can remember it. Somehow I think it was like '72, '73. I think it was then. I can't remember if it was after the passage of the Rehab Act of '73 or before. That was the other very big effort. DIA was involved actively in that. We went to the demonstration in '72. We were in the demonstration in the park by the Lincoln Memorial for the demonstration in '73. That was after Nixon vetoed it.
Jacobson
Were you involved in organizing it?
McQuade
I was involved in--not in the organizing of it. I was the grassroots representation. Judy was really actively involved in Washington with the people organizing the demonstration. We were involved bringing the warm bodies, and then when we got there, we were given different assignments, or we were going to be part of the march. Bobbi Linn and I--Nixon vetoed it in '72. Bobbi Linn and my job was--Julie Nixon, I think, was speaking, so Bobbi Linn's job and my job in '72 was to create a ruckus during her speech. So we got up in the middle of her speech and screamed, "No Rehab Act!" and walked out to the boos and jeers of the crowd. I would say a large Republican crowd. We got up in the middle. I'm telling you that had to be hard for both of us, because we were alone. I don't know if there was anybody else in that room. I just remember Bobbi Linn and I had to do that; that was our job.
Jacobson
You came a long way--
McQuade
Yes, so it was like I think the two of us were wrecks. It's easy to do it when there's a large group. It's harder to do it when there's a handful of you and you know you're not going to be well-received in what you're doing. Some of the other things we did in DIA--like every Labor Day, Jerry Lewis has his telethon. Back then, we were trying to change attitudes and make people realize that certain types of fund-raising, certain types of efforts, while the intention is good that you're trying to accomplish, you want to do
I remember there was a couple walking by, and I'm handing out the leaflet, and this guy was incensed. It's sort of like when you have an impression that somebody's a good person and they're doing good things, and somebody says, "No, they're not," and it makes you angry. So this man is screaming at me, the girlfriend is trying to pull him away, and I said, "If you're in a wheelchair and you're trying to look for a job after one of these things, then tell me about this method." But he was clearly--it was like you were attacking motherhood and apple pie. [laughter] I guess you can't attack apple pie or motherhood. It was interesting because we really were--when I look back, there was really a handful of us. Maybe several hundred people belong to the organization but of the activists who go out and do this stuff, maybe twenty or thirty of you at different times.
The newsletters--Judy, her mother, me and my mother, and my sister Maureen sometimes would come--somebody would make a promise that they would mail out the newsletter and they wouldn't follow through and there we would be, at Judy's house, mailing out the newsletter. Or people would promise to write something and if they didn't, you would have to do filler or whatever. But there was a lot of enthusiasm, a lot of volunteerism, and people made things happen.
Judy also was working with the board of education, I think, to make improvements there. The Willowbrook deinstitutionalization started at that time. We got involved with--there was a conference down in the lower eastside, and there was a man, Wolf Wolfensburger was one of the people. One of the people--what's his name? This Irish guy, Malachi McCourt, married a woman who had a child who had Down's syndrome, I believe. He was active; she was active in it. There's a conference--The newsletters--Judy, her mother, me and my mother, and my sister Maureen sometimes would come--somebody would make a promise that they would mail out the newsletter and they wouldn't follow through and there we would be, at Judy's house, mailing out the newsletter. Or people would promise to write something and if they didn't, you would have to do filler or whatever. But there was a lot of enthusiasm, a lot of volunteerism, and people made things happen.
Jacobson
Is that the Malachi McCourt--
McQuade
Yes, his [brother] Frank McCourt wrote the book, Angela's Ashes, yes. He also had a bar in the Village; Bells of Hell, I think it was called. We used to have some kind of events there sometimes for DIA. Most of this was in the early seventies, because I left the board in the fall of '75 when I went back to school. But it was like, we were involved in supporting the least restrictive environments for people, home care. We worked with--it was the National Paraplegic Foundation. There was also consciousness-raising women groups at IRM. Carr Massi was there.
Jacobson
IRM?
Institute of Rehabilitation Medicine, Rusk Institute [Rusk Institute of Rehabilitation Medicine, New York University Medical Center]. Some of it had to do with changing attitudes, people with disabilities talking about their own attitudes, their own feelings, and sort of like coming to terms with themselves and their experiences. Some of it had to do with going around and talking to parents of disabled kids, participating in different events that hopefully would improve the life of people with disabilities. There was the School for Exceptional Children. So you met tons of different people. When I think back, it's like such a hodgepodge of all different things that we were trying to accomplish.
Frieda Zames and earlier disability rights activists and the push toward a united movement inclusive of people with all types of disabilities, disability rights as civil rights
JacobsonDo you have any thoughts about why it happened at that time?
McQuade
I really think it happened towards the end of the sixties, but some of that sixties--challenging the system, questioning what people took as "this is just the natural order of things." I think that spirit was still there. I think for my generation--it's not like there was never anything done by people with disabilities before. Frieda Zames--I haven't read the book or anything, but Frieda Zames was writing a history of the disability movement. There were people who were involved back in the thirties; that was like the New Deal and people were trying to change the world and improve everything, get us out of the Depression and all of that. There were people with disabilities back then who were basically fighting for jobs. It wasn't, in my view, from what I know of it at least, it wasn't a total full-fledged disability rights movement. It was really people with disabilities seeking employment.
I think that part of the movement--if you remember with ABC [Architectural Barriers Committee], one of the things that was interesting, we were like the young whippersnappers, to use an old-time term, because there was some friction with some of the ABC members. There were people in New York City who belonged to ABC. It was like they had been working for things and here we were coming along, and we were seen as radicals. Almost like we were questioning what they had done. We didn't really see it that way. We were respectful of what they had done.
First of all, it wasn't just physically disabled, even though largely the physically disabled--to be historically accurate, the leadership had physical disabilities. There is no question about that. It was people with physical disabilities who were the leadership and who really pushed the idea that we shouldn't be separate anymore. There shouldn't be the blind working for the blind. The people with cerebral palsy in their own corner. I don't think until a little bit later on into the seventies, we weren't that aware of people who were deaf, and largely the problem there was the communication problem. But as we became more cognizant of the different types of disabilities, we were pushing for a whole change for the whole group. We really saw it as counterproductive that you would have the Epilepsy Foundation working for epilepsy; this foundation working for that, that if we banded together, the issues really were the same. How you solved the
Communication access really has an on-going cost to it, but it's still a barrier. I realize with deafness, because it's a different language, deaf people generally see themselves as a culture. They don't see themselves as disabled; they're deaf. Leadership will join with disabilities rights people. Like in NCIL [National Council on Independent Living] and all, there were directors who were deaf and all of that. I think it's largely because, unless you become skilled in sign language, or if you have interpreters all the time, it's a real barrier. It's like they were speaking French, and you can't speak French. But it really was the beginning of seeing there should be one united movement. You can work on individual things that maybe have a very specific interest to a particular group, but you needed to unite as people with disabilities.
That was what I think was truly unique, that we saw ourselves as a social movement, as people who needed to unite to work for the common good of all of us. The answer simply wasn't a ramp, and the answer wasn't simply--when we became aware of an interpreter--the answer was that people with disabilities want to be equal participants in their society, and that's the really unique part: That society needs to change, and that it's not all on us. When you think about the rehab movement, the rehab movement was helping us to fit into the otherwise inaccessible society. If you wanted to be an artist--"No, no, no, you can't be an artist. You have to do this, because this is where you'll be able to get a job." I'm not criticizing. For the time it started, that was new, that was not just putting people to make watches or sheltered employment or whatever, but the concept of finding a skill or an employment, that the disability isn't a barrier. You can go to work. But ours went beyond that. Ours was that we questioned, "Why does it have to be inaccessible in the first place?" If we build it accessible, then everybody can use it.
There's some things as we get on later that I think we should take another look at, but I think that what has proven itself to be absolutely true is that when you make things accessible, everybody benefits. No one take the stairs when there's an elevator--I shouldn't say no one. But you go into our subways, more nondisabled are on those elevators than you will ever see a person with a disability. Mothers with strollers. And what we always argued: If you're pushing a baby carriage, if you're carrying groceries, if you're walking, it's easier to use a curb cut. You'll see ramps, nondisabled will be on those ramps. People walk down the curb cut. So, the barriers that we remove--and just the whole idea of communication access. Now you go into a theater, they have assistive listening devices. Lots of people become deaf with old age--my father is a perfect example, profound hearing loss. They have signed performances, too.
All of that was, I think, really unique. If you think about like Sweden and places like that, they've been advanced in making their society physically more accessible, but I don't think anyplace else saw it as like a civil rights movement. I think that is really from America. As we started to see, "We're citizens, yet we can't get into voting booths. We can't get the same education as anybody else. Even though we pay taxes, we can't get into our municipal buildings." That, I think, is what grew out of that, but I think it came out of that whole questioning of the way our society was, and realizing that, "No, no, no, women should have equal rights, people of color--there's no reason that they should have to drink from separate fountains or have an inferior education." It grew out of that.
DIA's involvement with Willowbrook and deinstitutionalization
JacobsonI wanted to get back to something you brought up a while ago. You brought up Willowbrook and deinstitutionalization. How did DIA get involved?
McQuade
When the story broke, certainly we were supportive, because we believed that--
Jacobson
Tell a little bit about it.
McQuade
As far as I remember, and I can't remember whether Judy was contacted, or contacted someone, but what we did was, we reached out to groups working with persons who had mental retardation. I think it was the School for Exceptional Children. It was a private school. That may not be the full name. I remember they came to meetings, and I think we gave a talk.
Our basic position was that--we didn't use the term "least restrictive environment,"--but our basic position was that the resources should be there so that people can live in the community; that the answer isn't putting people into these massive institutions, many of whom, had they had home care, accessible environments, support, would have been able to live at home. Also, I remember the Wolf Wolfensburger conference, the thing that Malachi McCourt was at. Judy had made that connection. That was really about normalization, was Wolf Wolfensburger's point. We were supportive of that idea. If you put people in an institutional setting, and you don't have expectations for them, and you don't treat them as you treat other people in your society, they're not going to fit into that society. It was the whole argument of you need to be part of the society rather than separated from it, as much as you can participate.
It was such a horrible, horrible story, about the conditions and everything. I think in a way when Geraldo Rivera broke that story, he also became, for a time, interested in general disability issues, because he did a story one time. I remember when I was with DIA, we were talking about architectural barriers, employment barriers. I was one of the people talking about those issues with him. I remember we were walking through Central Park and he was showing some different types of barriers and things, and we were talking about physical barriers, attitudinal barriers, things like that. This was shown on the evening news, ABC TV, I think. I don' t remember the specifics.
We were also talking about just generally recognizing the value of people, and that people should have as much choice--I think that was the other thing--as much choice as they're capable of having. I remember we would give talks sometimes on disability and sexuality, and that's always a big thing in terms of people with mental retardation. If people are in group homes and all, like how much choice do they have? Parents are always afraid of the women becoming pregnant and not being able to take care of the child, not recognizing that people, even if they don't have precisely normal intelligence, that they still have the human need to love and be loved. Sort of like finding ways to deal with these topics, not to be punishing people for a natural human reaction, while recognizing that there's also responsibility there.
I'm sorry for being so vague. Some of this stuff--Judy was our president, and she was the one going to a lot of these meetings and she would bring back to the group different
Jacobson
That's fine, Denise, it was a long, long time ago.
McQuade
Yes, I'm lucky if I remember what happened yesterday.
Consciousness-raising among parents
JacobsonBut I have another question. What about--DIA was promoting several disability rights which were very often in contrast or conflict with the medical model. Do you know what I mean?
McQuade
Say the word. The what model?
Jacobson
The medical model.
McQuade
Medical. Yes, yes, definitely.
Jacobson
Okay, where were parents in all of this?
McQuade
We were very interested in talking with parents. We would go out to libraries where parents were gathering. We would attend meetings of parents of disabled students. I think we went to some UCPs [United Cerebral Palsy centers] and all of that. As I remember it, a lot of our time was spent in consciousness-raising among parents.
Jacobson
How would--?
McQuade
We would give talks. We would really give talks and talk about maybe our experience growing up, what we hoped to change. I guess try to encourage parents to dream a little for their kids, and to see that things could be changed.
Jacobson
How was that received?
McQuade
I think some parents were very open to change, or it made them think. I think other parents felt like, depending on their child's disability sometimes, "Well, that's okay for you, but my child isn't like you."
This is with a lot more life experience than I had then in my twenties--some of the things I think we really need to look at a little bit more is that every individual has to be looked at as a person, a unique human being. I think sometimes we don't always, as people with disabilities who have made it in the world. You're a wife; you're a mother, and I mean that in a positive way. It's a big thing to take on the responsibility of raising a child. You know that better than I do. You're doing work; Neil [Jacobson, Denise's husband] does work. You're doing it having disabilities. That's not an easy thing. You've
I'm going to give you a very specific example. It was maybe a year or two ago. With my current job, one of the things I do is I go out and talk about an accessible mass transit. One of the places that I had gone several times to is a UCP center in Staten Island. Most of the people there either have cerebral palsy and some kind of psychiatric involvement or mental retardation. That's just this center. I realize that one of the myths about people with cerebral palsy is that everyone is mentally retarded. It's a smaller group. But this particular group does have mental retardation. This was also an eye-opener for me. Because when you're trying to dispel myths, sometimes you may gloss over some of the harsher elements of the disability. Everybody I knew who had cerebral palsy was highly intelligent. You, Bobbi Linn, Angela Thompson. Everybody was very bright, very capable. You didn't have a doubt that--and you can get really worked up and say, "How can people not understand this?" But as I've lived longer and experienced more settings, I've met people who have a lot of--this isn't--I don't see the disability as the biggest problem, but some people, their socialization has left them with major kinds of deficits that just won't be counteracted by a movement. Some people won't have the same abilities. What happens sometimes--
I'll tell you the story as quickly as I can. I was giving my talk, and one of the things that was going on, there was a young woman, and they were talking about--very severely involved speech--when they were talking to her, it was like the feeling I had, because I didn't know this person, so I don't know if I talked with her individually or longer whether I'd have a different impression, but my impression was: here's this young woman, and she's very involved, and I don't know how mature--
II. More on Dia, Promoting Accessible Mass Transit
An incident with a young woman at a United Cerebral Palsy Center, the loss that accompanies having a disability, the stages of disability
Before we go on, last night you were telling me a story, and you were cut off. We were talking about parents. [You said] you went places and you spoke about disability. You went to this one center and people were talking about--.
McQuade
That was more recently; that was several years back. I'm a public information coordinator for MTA New York City Paratransit Service [Access-A-Ride], so part of my job is to go out and give presentations. I don't go and do as many presentations as some of the other people in my office. One of my colleagues who also does this is a wheelchair user. He does more presentations than I do, because he'll do the ones where people are applying for paratransit. We call those "application sessions." They'll review the applications that people have and take their pictures, things like that. The kinds of presentations I usually do will be about Access-A-Ride, which is what we call our paratransit service, and mass transit. We really try to push the mass transit. We have a very extensive mass transit bus system. We have like 4300 buses, and they're all accessible, so we're encouraging people where they can to use it, and we're encouraging people where they can to use the subways that are accessible.
I was there, really, to give a talk about mass transit. There was a lot of interest, questions, problems, about Access-a-Ride. This is a United Cerebral Palsy center, but this is in very modern times. This was about a year or so ago. There were some professionals that work at the UCP. It's a rehab center. They have a variety of programs. Some are rehabilitation; some might be sheltered employment, and many of the people also go out to work. I shouldn't say many, a number of the people.
One of the things that was being talked about, there was a young woman there, and they were talking about--I think it was a presentation, it was a day when a lot of people were invited from the community, different kinds of speakers. This young woman--I think they were videotaping, if I remember correctly. I don't remember her name, probably in
It just struck me like--she was like a--I'm trying to think of the right word, in one way a poster girl for what everybody should strive for. I just really wondered how much was she really able to direct her own life. I'm not saying they were forcing her to marry the person, but it just struck me like, "Oh, you meet this boy and this is what you do." I'm assuming they didn't talk about her working. As far as I remember, I don't remember them talking about him working. That's not the only thing to do. It just struck me like, you set her up in this apartment, you set up her life, she's going to get married, she's going to have a husband, they'll have aides, attendants, PCAs [ Personal Care Attendant] and all, and isn't this wonderful? Here's this severely disabled young woman, and isn't it wonderful she's going to live independently? It didn't strike me as real. It didn't strike me like these are probably two people who met, liked each other, and so, of course, you're boyfriend and girlfriend.
What I said to you last night was it reminds me of parents who have young, young children, and they dress them like little adults. If they have a friend who's a boy, it's like, "Oh, that's her boyfriend." It just struck me like this person could not have had enough experience of life to be making a decision to get married. I have no idea how long they knew each other, but it seemed like it was just like, this is what normal people do and see, she's having a normal life.
I found it kind of offensive, I guess, in a way, because it seemed to be that it's fine if she meets somebody and she gets to know this person and they want to make a life together, but it just struck me like she was a project. She was the project for these well-intentioned, nondisabled individuals and they were going to set everything up, and it's like Cinderella meets her prince, and they all live happily ever after
Jacobson
They're putting their own baggage on--
McQuade
As I said, you and I are both married. There's nothing wrong with getting married, but it just struck me like, "This is what normal people do, and we're going to make your life like everyone else's life." It just didn't strike me as a lot of thought had gone into it on the part of the individual who was getting married, on the part of this girl. I had no sense of her--she was excited, but I just found myself wondering, is she excited because everybody tells her this is a wonderful thing, and your life is going to be set up? I just had this feeling--and it's a feeling, because I really didn't get to talk to her--that it's like everybody had made nice and had made this perfect little world for these two people.
Jacobson
Well, it's like trying to prove a point that disabled people are--
McQuade
Are like anybody else.
Right.
McQuade
In terms of our feelings and emotions and everything else, some of us are like everybody else, in terms of internal feelings and everything, and some of us aren't. It was sort of what I was saying to you about when I was reading the article about mentally retarded couples who had married and then had children who were not mentally retarded, and some of the problems that arose in terms of how they handled the situations. Children frustrate--as you know--I'm only an aunt, I've only babysat, so I can go home and say someone else can take it from here--but children don't do exactly what you want them to do, and they can be upset and frustrated. How you handle that, it's really a test of your perseverance, your frustration tolerance, everything. Some of the issues that were arising was some of these parents were making very poor judgements about how to handle their anger with their child. Locking them outside, was how a couple handled an unruly child, which is not a good idea to do with very young children.
Again, there's nothing wrong with getting married. There's nothing wrong with having a family if you're really able to deal with it, or there's enough support to help you on the things, with which you may need somebody giving you a little guidance and advice. It just strikes me. We've had such negative images of disability. Let me say it differently. I'm not one of the people in the movement who say, "Disability is just on a continuum. It's just like being--" I'm trying to think of the way this is. I've talked with different people in the movement, and some people feel like disability is just a continuum of how life is. I'm going to use the word "normal." It's just a normal occurrence, yes, it occurs, but to me, having a disability, you've lost something. There's a functioning that other people have that you don't have. It doesn't change your humanity. It doesn't mean that you can't have as fulfilling a life, or more fulfilling a life than someone else, but I don't feel like--I can't say, "Disability is beautiful." You can say, "Black is beautiful." You can say "Gay is beautiful." You don't lose something.
But I remember walking, and I know that there were things I--and even though I was very young, and it wasn't like the--I don't know if your experience was the same, but I found that when we would have groups of people with disabilities, and we would talk about our feelings about disability, I used to think it was much worse becoming disabled later, because you had so much experience functioning in a particular way. Then I met people who had been disabled later in life, and people who been disabled as long as I had been disabled, and it's a very individual thing.
When I studied to be a rehab counselor, there's a woman by the name of Beatrice Wright and she talks about the stages of disability. Part of that is true, but it's not as nice and neat as you would think in terms of when you go through stages, or you may skip stages. I know people who are less disabled than either one of us who have more anger, more bitterness, more self-rejection than I know I've ever experienced. It's such an individual experience for you, and so much of it is your own personality, your own values, how you look at life, and what you want to make out of your life. But I can't go around saying, "Gee, it's great to be disabled!" It's a pain in the ass from my perspective.
Disability culture, remembering the signing of the Americans with Disabilities Act [ADA], not minimizing the difficulties of having a disability
JacobsonWhat that brings up is another question about the term, "disability culture."
McQuade
Disability--?
Jacobson
Culture.
McQuade
Culture.
Jacobson
Where are you on that?
McQuade
I don't think there's a disability culture. I think there's a set of shared experiences. That when we all talk together, we all have our war stories. We've all experienced a certain amount of rejection. Some of us have experienced some self-rejection to a greater or lesser extent, depending upon the individual. But it's not a culture. It's not like we sing the same songs; we like the same things. We both use wheelchairs, and therefore both of us are going to love wheelchair square dancing. You know? I don't find that. In my experience, I have very dear friends who have disabilities, but what makes them my friends is there's something in common that we had. We went to school together. We laughed at the same jokes. We had some shared experiences, or we like some of the same things.
It's not different than what makes you a friend with a nondisabled person, but that shared experience, there's a bond that comes from that. It's like women who have given birth naturally. They have a shared experience. People who have had trauma, emotional trauma of some kind, you know, people who went through the Holocaust. People like us. We have a shared experience of not only disability, but in a movement, and when we get together we have old times to talk about. We have things to laugh about. We have things to maybe cry about, because some of our friends that were there with us at the beginning of the movement didn't make it to see ADA pass. Sometimes I think of those people and I get very--as I'm getting now--I get teary-eyed. I guess for myself, I didn't expect ADA to come about. You're getting emotional too! We're both blubbering. [laughter]
I didn't expect ADA to come in my lifetime. I figured we'd be the generation that fought the civil rights that somebody else would benefit from. So when ADA passed--a friend of mine, Judy Goldberg, we both went to NYU together. We've been friends for almost thirty years. We both were at the signing of the ADA, and we went to this hotel together. Denise Figueroa was there. I'm telling you, I was saying to them this was more of an emotional moment than getting married. It was such a kick. It was such a wonderful, wonderful day. It's hard to believe how you felt. I didn't feel like crying. I felt like singing, dancing. In some ways it was just such an unbelievable--It was like surreal in some ways, because you couldn't believe it had actually passed in basically two years time. What am I saying? '89, '90, it passed in '90. We couldn't believe it. I couldn't believe it. It was such a thrill, such a kick to see how far we had come in approximately thirty years. I started in the seventies, like you, and that was just an unbelievably happy, happy moment. You knew it was going to be an uphill struggle to implement it, which it
Jacobson
Yes.
McQuade
I know there's disabled people working, teaching disability culture, but it's not a culture to me. I understand in the deaf community how that can be a culture, partially, because you have a common language. I don't know. My signing stinks, so I haven't communicated enough sign to know how many things are unique in the cultural sense. Certainly a language is something that binds people together, and that is definitely a part of culture. But I don't know if in deaf circles it's all that different, other than how the communication takes place, from everyone else. I haven't been in deaf circles that much. I had professors when I was studying sign language who are deaf. I know people in the movement who are deaf. I know that they don' t see themselves as disabled.
One time, someone came to our center for assistance, and we were going over some things, and my sign was enough to know that she said she would pray for me, and I said back to her in sign that I would pray for her, too. This went over her head. I don't think it translated well, but I didn't feel angry. It was wasn't said nastily. It was said sort of ironically, like, "Though you don't see it that way. We really both have disabilities." For deaf people that I've encountered, it's like there's a great deal of pride in being deaf parents of deaf children. Deaf deaf is what they call it, at least here in the east coast. To me, I wouldn't feel proud if I had a child who had a disability. I wouldn't be suicidal, but I'm sure for yourself too, everybody wants a kid that's not going to have problems if they don't have to.
Jacobson
Except that there are disabled people I know who adopt--
McQuade
Right, I think that's fine. You can identify. You can really be there and know from personal experience some of the things they're going to encounter. I guess for me, whenever I was in a hospital when I was in as an adult and there were young disabled kids, I felt such sadness. I'd have to restrain myself from crying, because they're happy little kids, like any other kid, and you think to yourself, "There's going to be some tough times for you, kiddie." Because you know, until people get to know you, they're first reaction is, "Oh my God, I'd kill myself if I was in a wheelchair." People will say to me sometimes, "You know, I admire you so much. I don't know how you do it." I drive a car. There's a hand control. I learned how to drive. I don' t get the medal of honor for doing this. I use a wheelchair. It's not like--
As I was saying to you last night, I don't want to minimize some of the difficulties, because there are things that I can't do for myself at home, and I need help with. Like the higher parts of the closet. My apartment is not technically an accessible apartment. I can manage in it. But when I was living on my own, I had things on lower shelves. This is not designed for a person using a wheelchair. My wheelchair--this one doesn't actually fit into the bathroom, I have to transfer into a decrepit old thing that I have that's a little narrower. The thing is, it's like on my own, I had to put things in different places. When Larry and I started living together, he could put things up because he could take it down. But if I was on my own, things would be differently organized in the house, because it would be organized just to my particular needs.
There are frustrating things. This is also as we were talking about as you grow older and some of your functioning ceases to function as well. There's things that I used to be able to, like if I had to--I used to be able to crawl very easily. I can't do it like that. You should see me, I'm like a shaky old horse. You see that happening to you. Everyone loses functioning to a certain extent as they grow older, but to us you're starting out with diminished functioning. To us, it means more. If I injure my arms, I'm a basket case, because it's like I know I'm so dependent on using my arms for everything, this could totally change the way I live my life, totally change it. I think, granted the person who has full functioning and loses something feels that way too, but I'm just saying it's a more frightening thing.
If I fall, I'm afraid. I took a fall. I had my wheel come off, the front wheel. I got off the bus, I went down a curb cut and I felt myself tipping, and I didn't know what the heck happened. So I had to move, I couldn't just stand there. I was like four blocks away from the office. I'm wheeling along, and I see somebody--I wheeled up this curb cut, and I see somebody that has "Department of Buses" on his jacket. So I said, "Excuse me, I work for the Department of Buses, could you help me? Could you look to see what's wrong with this wheel?" He said, "It seems to be coming--it snapped." I never had this happen before, but it was like this piece that holds this to there--I'm so technical, "this piece"--[points to her wheelchair]
Jacobson
The front caster.
McQuade
It wasn't exactly the caster, it's the piece that holds the caster to the wheel, this piece here. So at any rate, it was coming off. I said, "Do you mind walking me to my office?" We take two steps. The wheel comes off. I fall. I go right out of the chair. Luckily, I must have been fairly relaxed because I didn't expect to go, I didn't break anything. My shoulder was hurting a little bit, whatever I did. This poor man--I was like a chimp holding onto its mother, because he was a very big man. When I talked to him, I had to like shout up. I'm hanging onto his jacket. I'm like a chimp holding onto the fur of its mother. He picks me up, and this other man had picked up my chair, and then we very, very slowly go to the office. That kind of stuff is really frightening.
What did I do? Earlier the year before, in a transfer, I injured my ligament. What the hell was it? I tore a bicep, so my arm--my doctor said it's like a baseball player, you injure your arms a lot. That sort of stuff is a little frightening and all.
I know I'm sort of digressing, but I don't see it as a culture. I really see it's like any group of people who have a common shared experience. I'm talking now about bad experiences, but it could be a good experience. People who went to college together; they have something that connects them. People who go through--they climb Mount Everest together; they have a shared bonding. For me at least, I don't see that makes us a culture. A shared experience, yes. I definitely think when you sit down and talk, you find there are emotions, there are connections that--it's almost like you don't have to use that many words, and people feel it.
It's like that in the same way I talk to my friend, Judy Goldberg. She has osteogenesis imperfecta, so she walks with a cane. In snow, if she falls, her bones break, so the two of us are like really sisters in the snow. We always call each other, and we commiserate with each other. But the feeling, you don't have to say a lot and we just know, yes, I
Jacobson
I get a lot of pain and get very stiff.
McQuade
Stiff, yes, yes. I know most women our age have some arthritis on their spines, disabled or not disabled.
Jacobson
[Right here?]
McQuade
Yes. You know, I think that. I hope I answered that thoroughly. That's the other thing too. You made me think of something. I was talking with Denise Figueroa, and I think maybe this perhaps makes some difference in your perspective on things. Denise Figueroa was an infant when she became disabled. Judy Heumann was an infant when she became disabled. So there's no recollection of being anything but having a disability. When I was talking with Denise, she didn't have this sense of loss that I've had at different times of remembering back.
Jacobson
When you were--
McQuade
She had polio also.
Jacobson
When you were--
McQuade
Three and a half when I became disabled.
Jacobson
What year?
McQuade
I became disabled in '51. I remember being totally paralyzed, unable to move anything but my head. Before that--my mother especially would tell the story--I ran a lot. I liked to run. I would run away from my mother. I would run away from my grandmother. I just liked to run. My mother said other women sat in the park knitting, and she was jumping fences because I would bolt, just take off and run. I remember running. I miss that freedom of movement.
Jacobson
Yes.
McQuade
To me, I miss that. I don't feel tragic about it anymore. We were talking about being teenagers. When I was becoming a teenager, I think I had a couple of really bad months, because I remember crying buckets full of tears. "Why couldn't I walk?" Sort of like I was mad at God, I was mad at everybody. I snapped out of it, but it was like I couldn't dance. I probably would have two left feet. I don't think I have a lot of coordination, but I wanted to be able to dance. There was one fashion that was out when I was thirteen or fourteen. It was called the Queen Ann heel; it was a little tiny heel. Of course, I'm wearing the horrible old shoes that you--orthopedic shoes. They really were like saddle shoes, but they were with laces. I couldn't wear really nice shoes, and you had the braces, and it just was upsetting.
Jacobson
Ugly.
It was ugly, and it was upsetting, but I somehow got over that, "My life is tragic."
Board member and steering committee of DIA, Student Organization for Every Disability for Progress, President's Committee on Employment of the Handicapped, fighting for civil rights
JacobsonI want to go back to DIA. You were president at one time?
McQuade
Right.
Jacobson
Do you remember what year?
McQuade
This is the horrible part. When I left DIA, which was the fall of '75, I was on the board, but I wasn't president anymore. I can't remember if Angela Thompson was president or who was president.
Jacobson
I remember that Angela was president, and I can't remember if you were before her.
McQuade
From the formation, I was the secretary. When we formed the corporation, I was the secretary. Larry Weissberger, now my husband, was the first vice-president. He was the only nondisabled person on the board. Judy Heumann was president.
Jacobson
What did Larry do?
McQuade
Larry was and is a social worker. He read Judy's story, and he was so incensed that it seemed so irrational and so discriminatory to him that here a perfectly qualified person would be denied the right to teach simply because she used a wheelchair that he got in touch with Judy. He was with DIA, I'm pretty sure, I know '70 and '71. I think he left maybe in the fall of '71 or the beginning of '72.
Jacobson
Who was--
McQuade
Susan Marcus who's now Susan Hayes was the treasurer. I believe she was an accountant.
Jacobson
And I think there was a steering committee.
McQuade
Yes.
Jacobson
Who else was on it?
McQuade
This is funny, because there were so many people like Pat Figueroa, Fred Francis. They formed SOFEDUP [Student Organization for Every Disability United for Progress] at Brooklyn College and they got involved at DIA.
Yes.
McQuade
Jimmy Lynch. Remember the late Jimmy Lynch? He was at LIU. There would be meetings. This is what I don't remember. What I don't remember was whether the steering committee was the executive committee. There was the executive committee, and then I think there were people who attended the meetings regularly, who either chaired a committee--I know at one point I was chairing the legislation committee. But the people--go ahead.
Jacobson
Let me clarify. SOFEDUP, did that group or DIA ever have--
McQuade
I don't know. Pat could answer that, because what they were doing, Fred and Pat were students at Brooklyn College, and they were working to make the whole city university, all the city colleges, accessible. They were working at Brooklyn College, but it was broader than Brooklyn College. I don't know if there was SOFEDUP in all the other colleges or whether in the work they were doing at Brooklyn College it was to be expanded to all the other college campuses, but they were activists and somehow got connected to Judy, and they would come to meetings. You remember the President's Committee on Employment of--I think it used to be the Handicapped.
Jacobson
The Handicapped.
McQuade
Right. One of the things we wanted to do, we wanted our movement to be a national movement, and we went to the President's Committee meeting. Judy knew about that, and we went to that committee. The first time I remember us going, I think it was around '70. We used to go every year. I remember every year we went. The first year we went, we were critical of the committee. We felt there weren't enough people with disabilities involved. A lot of people from the rehab community were involved in the President's Committee, but we felt that it needed more representation of people with disabilities, that the efforts needed to be directed not just to employment, that employment would not be achieved unless the issues of transportation, education, housing, things like that were also dealt with.
Jacobson
What I remember is that committee was started right after World War II, when there were all these disabled veterans that came out and couldn't find--
McQuade
Jobs, yes, after the war.
Jacobson
They started that committee.
McQuade
A lot of the early legislation, like rehabilitation legislation, really grew out of first, the first World War, dealing with veterans, and then the second World War and Korea. It was really what voc. rehabilitation was really meant for, the other legislation that was out there or programs were from Helen Keller with the blind community, and that's always been separate. One of the things with the President's Committee, the Rehab Act comes up for re-authorization every five years, and the Rehab Act was coming up in--first it was '72. Activist groups were pushing, and I don't know who came up with all of the modifications that they wanted for what became the Rehab Act of 1973, but we were certainly involved locally supporting the Rehab Act.
Judy was going to Washington a lot. I forget if she went out to California for a visit in '72. But Judy was doing a lot of traveling and she would bring back or get the information back to us locally, and we would support the bill. When it was vetoed in '72--the thing that I told you about yesterday with Bobbi and I running out saying, "No Rehab Act"--I'm pretty sure that was '72, when we were at the President's Committee meeting. I'm pretty sure, because the Rehab Act had just been vetoed, and everybody was really upset, and we had the first march protesting the Rehab Act not being signed by the president. Then the next part of the year was working for the Rehab Act to be passed in '73, so we tried letters. I don't think we were calling as much because we had a limited budget at DIA. It would be sending out letters, getting grassroots to come down to Washington, people who were interested. Usually it was the people who attended the meetings, and then we would work out strategies, like Judy would report on what was planned, and then we would work out strategies as to what we were going to do, before going there. Then there would be further meetings and information shared, to know what we were doing, what especially we had to do in Washington.
I shared a room with Bobbi, and this woman is dead now, Kathy, and I can't remember her last name. She had spina bifida. She worked. Most of us, if we weren't students we were working, of the small group. It was like a lot of your efforts were to get that bill passed and to explain--and also if there was going to be modifications that were opposed to, amendments that were opposed, to oppose it. That was a lot of the work. Going to the annual meeting of the Presidents' Committee on Employment of the Handicapped [PCEH] in Washington every year was a big focus of DIA's efforts. We would raise issues. We'd try to visit legislators when we went. We would give presentations. The first year DIA members attended PCEH, when we were highly critical of the committee and we got a room at the hotel and spoke about the need for the PCEH to expand its focus and involve more people with disabilities in planning the annual meeting. We felt PCEH needed greater relevancy and PCEH took us seriously and offered us a place on the program. DIA would present at the conference each year.
Jacobson
Who did you talk to?
McQuade
Whoever attended presentations. We were talking, I think, about disability rights. It was just people being, I don't think we used the term "self-directing," but people with disabilities taking charge of their own lives and working together for civil rights for people with disabilities. The themes were basically everyone should work together, not just approach it as single groups, but we needed to be united in the cause of disability rights, and really pushing the civil rights theme, training us to go to work when you couldn't get transportation.
Later on, I think we became more aware of the communication access issues for people who were deaf, but at this point, we were talking about--even if you have the skills, how do you get to the job if you're severely disabled and you can't drive? How do you live if the housing is inaccessible? How do you get to places--ADA called them places of public accommodation--when everything is closed to you. We need to change the world. That sounds so grandiose! It's like one of those old Judy Garland, Mickey Rooney movies, "Hey! Let's go out and change the world! We'll just do it in the barn!" We were very young, and we were very enthusiastic. [laughter]
For all real intents and purposes, we did change the world. People still have not been able to take full advantage of the changes that are out there. In many ways, attitudes have changed. Not nearly as much as they need to.
I think one of the problems with this is that here's this wonderful law that we have--not a perfect law, but a very far-reaching civil rights law. Most people haven't a clue about what it means. They ascribe to the ADA powers that it doesn't have. "Oh, it means my apartment has to be accessible." It has nothing to do with housing rights? They have no idea of the rights that it does give them, and they think it protects them in ways that it doesn't protect them. Then the other problem as I see it--this is sort of--what's the old adage, "The path to hell is paved with good intentions"--we've gotten more people with various kinds of disabilities into the educational system than ever were there before. But, along with getting assistance for people who need PCAs or need writers, what we've done is we've emasculated the next generation of people with disabilities, because they're not encouraged to do for themselves what they can do. I was doing more of this--do you want to ask me a question?
Jacobson
No, go on.
Promoting access to mass transit, ADA compliance in transportation, fostering dependence in children with disabilities
McQuadeIn promoting access to mass transit, one of the things we do is we work with the travel training program at the New York City Department of Education. It's a really unique program because it works with people with physical or cognitive disabilities other than blindness. That's a separate thing. One of the things we do is we'll bring a bus. We'll have kids. It could be grade school. They could be high school. They may be in an integrated setting. The travel training program really focuses on, I think, kids in the special ed. This false dichotomy between special ed. and mainstream is just wacky. It should be based on what are your needs, and what do you need to do to facilitate you becoming educated. Not this, "You're special ed. You're not special ed," because you may be able to be mainstream, but need special services. I know they have resource rules, but there are some things that don't work as smoothly as it should.
At any rate, when we go out and give talks, most of the teachers in the city public schools are totally ignorant of the fact that we have accessible mass transit. This says several things to me. It says to me, "They're driving to work," because otherwise they would know that our buses are accessible, or maybe they're taking the subway. The subways--we only have about forty some odd of our key stations done. We were going to have like fifty-four, and then there was a local settlement. In actuality, we had a state building code and transportation law that required any public building where a major renovation takes place--undefined major renovation--had to be made accessible. The MTA [Metropolitan Transportation Authority] did not want to have to make every station that they do a major renovation, and nobody agreed on the definition of "major accessible." So the local disability community, EPVA, Disabled in Action, all of that, agreed that they would add on more key stations, so that a hundred of them had to be done by the year 2020.
Of course, anything that is touched that there's an ADA spec has to come into compliance. Anything built new would have to be made [to be ADA compliant]. But they felt that this would be a planned accessibility, rather than a station here that doesn't connect to any other station. At any rate, that was what we did locally. But we go around; we want to encourage people to use the buses, if they can, also, the subways, to be aware of what's out there and to get a chance to try it.
One of the things I found in giving presentations is a lot of the families, a lot of the kids don't know about this. I've seen kids with PCAs--aides--they call them paras, right? Paras, and it's like, "Kid, you should be pushing yourself. You can push yourself." There's paras walking along, and you have kids, they don't know their room numbers because the para takes them there. They could learn their room number. I didn't know what streets were down streets, what streets were up streets until I had to drive a car. I could get to the avenue. Somebody had to push me. But I didn't pay close attention to this, because it was irrelevant to my life. When I have to go on a subway, I have to look at a map and ask, "Where does this let me off?" Just like you go to a different city, and you have to do that. At any rate, what I found is a lot of the kids, not all, because there are some kids that are really enthusiastic, but a lot of the kids, obviously their parents aren't taking them on the bus. They still get transported to and from school. I'm not saying that they shouldn't because until you learn it--and some of the children that we do see, they have multiple disabilities. So it's not simply saying to Denise Jacobson and Denise McQuade, "Okay, you go to this corner. The B51 comes here. You can take it to there." It's not simple like that. It's really learning how to safely cross the street, what to do if you get lost, how to recognize where to get on and off a bus or subway. It's really learning travel instruction, mobility instruction.
These are kids who maybe never in their lives has anybody bothered to do this, because somebody's always taking them, so they don't have to pay attention. That part is disconcerting, because it's like, from my understanding, talking to teachers, once something's on your plan, it's hard to get it off unless your parents insist. And these parents are very afraid for their children. They like the idea of having a para because they're concerned about their children being hurt, and the school's concerned about being sued.
There's a big difference to me between saying, "Okay, I need somebody to carry my tray. I need somebody to help me in the bathroom. I can't take notes." The other thing you have to look at with some of the stuff, we have all this technology, right, do you really need somebody to write notes for you? You may need something written down. It's sort of like, why can't the teacher, since you have a plan--we used to have, do you remember mimeographs? It's like why can't notes be handed out? It would save money. You have to write it anyway. I mean, the teacher doesn't commit this to memory and write it on the board.
Jacobson
A lot of high schools in our area in California have websites.
McQuade
Websites, right, and you can pull it up.
Jacobson
Homework is on the website. If someone is absent from school, he can get it--
Here's one of the things that you see is problematic. In school they'll get some of the technology for the kids. When they go home, they may not have a house where they can take the technology with them, or the parents don't know how to use it. So the kid doesn't get to use it at home. It's like, there's a lot of areas where--I firmly believe this--the reason why these things are not done is because you don't have enough--I'm not saying everybody with a disability has the smarts or the interest or does what they should do, because a lot of times you see people with disabilities in the school system--I shouldn't say a lot, sometimes you see--and some of the people you meet, they don't do anything. They don't have any more knowledge than a nondisabled person. But if you hire people with disabilities who understand technology and know how to apply it, you could really have a more independent person. I think that's one of the real tragedies here, that they throw people at it. You get a person to do it for you. But when you go out on your own as you know, and I know, it's not going to be paid for. ADA doesn't require PCAs.
The trend to mainstream children, the role of the paraprofessional, the misuse of SSI, attitudes about the potential of children with disabilities
JacobsonOne thing I wonder about, and maybe you could comment on it, because you go out and you do the same things. Are you seeing more kids who are more mainstreamed?
McQuade
There are more. The positive side is these are kids who are getting out who might have been kept on home instruction. That's a positive thing.
Jacobson
But are you seeing kids like you were or kids who are more severely--
McQuade
Both. Some of the kids I've seen have severe physical disabilities and probably have some mental retardation. Other kids may just have learning disabilities. Now, they could be very severe, or they could be moderate. Then you see some kids, it's just a physical disability. They're using a chair. I believe every child, whatever you can do--I'm not talking about if it takes you an hour to tie the lace on your shoe, that this is how the hour should be spent. Get velcro. But in terms of doing the things--because, the reality of life is, if you're very, very bright, and you have wonderful skills, you could be very severely disabled, and you will get hired, and the technology will be provided for you, because you're going to offer something. If you're average, and you're going to have average skills, and most people are average, disabled or nondisabled, when you go out, there's no law that says you have to hire the most disabled interviewee that comes into your office for the job. It's not affirmative action.
It seems to me what we want to do--and people have different interests and different skills--that you want to make sure that the person is as independent as they can be, so that what they can do for themselves they do. It's sort of like, to me, you want the person for their personal life not to have to always be paying for people to help you in things that you could have done for yourself. I think what's happening, what I see out there, especially for kids where you see somebody pushing them: get a power chair! What do you need somebody to push you?! You don't get privacy. You get these symbiotic relationships where for the para, they have got employment. Usually they're
We had a woman, when I was in high school, there was one class I had to go to where there were stairs. It was an old school with a new building connected to it. I had my braces and crutches, but I needed somebody to pull the wheelchair up. I walked up the stairs so I could go to this class. We had a para. The para did that. If you're at lunch, and you couldn't carry your tray--and I can't carry trays most times--the para would carry the tray.
Jacobson
We didn't call them "paras." We called them aides.
McQuade
We probably did, too. Now they're called paraprofessionals, but they were called aides. So there was this one woman, and there were about three of us who might need some help on something like that. What I see is that the kids--here you're in an integrated environment and you should be having all the things we talked about [in terms of ] why we wanted integration. You interact with other kids your own age. How much do you interact with this person there, with these kids your own age? How much do you get to socialize with the kids, you know, the social aspects of school. You still don't get the extracurricular activities.
Jacobson
I remember when I went to school, and I couldn't write that well. So, I would have the teacher ask a student to make a carbon copy. That's how you not only got the notes, but you got to interact. It was an icebreaker.
McQuade
Yes, because the person gets to know you. I question how much these kids get to interact who could. When you meet the spunky kids who are ready to go out there--I'll tell you another--this is a very disheartening story.
As I started to tell the story: A colleague of mine, he uses a wheelchair, and he was doing a bus demonstration. This one girl, she was saying something like, "Well, I don't need to do this." He said to her--I believe it was him talking--he says--they were talking about what are you going to do when you get out of school. She says, "I'm going to watch TV. I'm going to stay on SSI and watch TV." This is the goal. This is like, to me, it's like the intention was to supplement. When they took the aged, disabled, and blind off welfare and they gave SSI--if you had never worked, you aren't entitled to social security--
Jacobson
That was--
McQuade
It was '72. We worked on stuff like that in DIA. Here's the downside. It's no different than what happened with the welfare program, which at first was meant for people as a temporary thing, like in the Depression, and then later on for people who came upon hard times or something. It wasn't supposed to be a way of life. What I'm seeing, and I hear this from some of the teachers I know because you can get SSI for your disabled child, what happens is a lot of times a parent wants them to get their education, to be in
Jacobson
Why?
McQuade
Because they know that they will eventually lose their SSI check, and the family becomes dependent upon the money. For the person, what often happens is it's like a welfare--it's a dependency mentality. "Why do I have to work?" In our society, somehow it's not getting communicated to these kids through school, or anything else, that people who are capable of supporting themselves do so in our society, and it's not like anyone is saying to them, "Hey, you know, what do you mean you're going to stay on SSI? There's no reason for you to be on SSI." No one's saying, "Your SSI will be cut off at this particular point." So, their view is--
Jacobson
But they also get Medicaid and in-home support.
McQuade
Right. The Medicaid part is really important unless--and I know there's been some changes to how people, when they go to work, the insurance of the company won't cover pre-existing conditions. The Medicaid part is really important, but the downside of what's happening is that the family, first of all, wants all the programs, but they don't really believe that their child, in many cases, can or should work. They get used to having that income.
When you go to work, you may not get that same income; you may lose your job. There's all of these concerns and worries. Not all of this is because the family is a bad family. It's your attitude about what your disabled child should be expected to do and what they can do. It's also--most of society still doesn't see that we should have the same responsibilities as anyone else. It hasn't permeated enough of the levels in our society. It really hasn't. If you sat home and collected a check, no one's going to say, "Hey, that Denise sure is a bum. See we should be out working." If you weren't in the wheelchair, and you're just sitting on welfare, people would want you burnt at the stake. "She's not working, and I have to go to work each day?" I really think the intention was good to get the Medicaid to the people, but I really think that giving money is not a good--other than giving money for things that are disability-related that the family can't afford.
I basically believe in national health for everybody; that nobody should be without their basic health needs met, but I think what happens, the family sort of in many cases--I think in a lot of cases, the family doesn't think about the future. When you're not there, what's going to happen. They don't think about you could earn more money. You have to (1) believe that the person is capable of doing these things and (2) believe that they should do these things, and then see to it that they do whatever they can. I'm not talking about the person who would never be able to earn a living wage. And SSI will allow you to keep SSI until your income, including deductions for a disability related work expense, until you are no longer eligible for one dollar of SSI, that is how the program worked when I was working for BCID [Brooklyn Center for Independent Living]. You can argue about how much SSI there should be and what should be the level of income before you lose anything.
But it's a problem. I'm not saying all the students, because I've certainly encountered over the years when I worked in independent living and otherwise, kids that have the same expectations they're going to go out and do. You also have people, a lot of times, who are from other cultures, where there's nothing for the disabled person to do. There may not be enough employment for nondisabled people, and so those expectations aren't there. It's not getting communicated enough, I think, at least from what I'm seeing.
A need for role models for children with disabilities
McQuadeI don't want to paint too bleak a picture, but I really do think that there needs to be more emphasis. You know how they have Black History Month? There probably needs to be more emphasis on people with disabilities who have made contributions in history, because there are. I know, you know, Thomas Edison was deaf.
I like history, so I watch Black History Month, because you learn much more than you ever learn at school. There was a woman who had been a slave. I don't remember her name. During Reconstruction, she became a newspaper writer. She had a disabled sister. She took care of her sister. I don't know everybody with a disability who's done extraordinary things, but I know based on seeing black history, there have to be a heck of a lot more people who didn't necessarily identify by their disability. We know Franklin Delano Roosevelt--I guarantee you the average high school student in the public schools probably doesn't know that he had polio. He, again, because of the attitudes of the time, he didn't show himself with a wheelchair being carried off of trains, because people wouldn't have seen him as a strong leader.
Jacobson
He tried to--
McQuade
Hide it, yes. I understand why because in his time people felt very negatively about themselves if they were disabled. Their families felt that way. A woman I work with, our first director, she was nondisabled. She had an older cousin, Cousin Jewel. We used to talk about it. Cousin Jewel had a very minor disability. Whether she had had polio as a child and it affected one leg, she limped a little. Cousin Jewel's entire life was colored by this fact. I don't know whether she went to work or not; I can't remember. We were talking about it, how the difference between that old generation when having any kind of disability made you like the untouchables in India. "Cousin Jewel couldn't marry. She was disabled." Not that I mean to go back on what I was saying before. It wasn't expected that you could have kind of a regular life if you had a disabling condition. People saw it as a shame or a curse from God, or whatever. Most, not all.
So, it seems to me that one of the things that we really have to push for is that the accomplishments of people with disabilities would be part of everyone's schooling, not just for kids with disabilities. Minor or major disabilities so that everybody--you dispel the negative stereotypes about people with disabilities so that people with disabilities, kids, do have role models to identity with. You don't only have to identify with a person with a disability, but I certainly think there are so many people out there with
I think from when we go out and give talks, some of the kids really relate. They like trying the buses; they try things. There's some kids that--we give talks to everybody--kids with severe autism and everything else. They're not going to be on the bus by themselves, but their families could take them on the bus.
Jacobson
Yes.
McQuade
Everything isn't to me that you'll do everything totally on your own, but it opens up so many more avenues. It's like if your family knows that there's a bus, and the school--you have an after school activity or a weekend activity, you can do it. If you can't do it all by yourself, your family could come with you.
The goal of expanding DIA nationally, Judy Heumann's decision to go to California and her role as a leader
JacobsonI do want to get back to DIA. You said that there was a goal of having DIA spread across the country.
McQuade
There were, and there are other DIAs, yes.
Jacobson
In your mind, was that successful or not?
McQuade
Was it successful? I was going to say "sexist." No, women were leading it. I think DIA itself, they call it the metropolitan DIA, for like the New York group. I went over to give a talk in Newark to establish a chapter there. I went over to Maryland, to establish a chapter of DIA. I think the Maryland one exists. Frieda would probably--Frieda Zames--would probably keep track of that. I know we gave talks in those places. I forget if there was one in Pennsylvania. I think there was, but I don't know that it's functioning now. So we would try to have--
Jacobson
How about New Jersey?
McQuade
I don't remember. I don't know if DIA still exists in New Jersey. It may have changed into something else. I really do think, both from the CIL [Center for Independent Living] in Berkeley, from the students who formed the independent living center in Berkeley, really the independent living center on the campus on the Berkeley campus, and from DIA. The concept starting getting out. The idea of disabled people--I have to stop and tell you this.
I spent my life correcting people saying "disabled people" in our literature and everything. "People with disabilities," to emphasize for the nondisabled, the person, not the disability. When I talk with people with disabilities, I won't say "disabled people." It's funny, it's a thing that I really try to get across, because people who aren't disabled see the disability. It's obvious, with us you're going to see it first. But disability is the
At any rate, going back, I think the idea of what DIA was trying to do very much came into vogue. There still are individual organizations representing specific disability groups, but they come together--not that they didn't come together before if necessary, but I think this whole idea of all different people with different kinds of disabilities working together, that idea was adopted. The National Council on Independent Living, the state associations, that there are independent living centers, I think the idea of that spread. I think the people in Berkeley, and the people--certainly for the idea of a center--but I think the DIA concept, the concept of people with disabilities uniting together to work for, first there's civil rights, but then to really change the world that we lived in so that we could be integral parts of that world as much as we want to be.
Jacobson
Do you know anything or have any knowledge about when Judy went out to California? Do you have a sense of why she went there?
McQuade
I think she had heard about it, and she wanted to find out more about it.
Jacobson
Was part of it to promote this idea of Disabled in Action?
McQuade
This is funny. I know we talked about when she was going out. I know she had heard about the center and she wanted to find out more about it. It might have been to promote the civil rights movement. Because that really--that wasn't a movement per se beyond Berkeley, that was to really provide, as best as I understand it, the idea was to provide supportive services so people with severe disabilities could participate in the Berkeley campus. So I think it probably did have to do something with that. What I was going to say to you, when she went out, I felt a void. Judy was and is a very strong--she has a very strong persona. You know when Judy's there. [laughter] In the movement, even at that time, people either adored her or were critical of her.
Jacobson
What were they critical of?
McQuade
I was going to say this happens to divas in other places. Judy is a diva. Some people felt--talked to me, because I was very close to Judy and I didn't feel the way some of these people felt, because I think you have to have the kind of drive that she has to take on what she took on. She has immense energy, she has a good memory for people, she remembers people, and she just did a lot. I think I consider her as the mother of the modern disabilities rights movement. I don't feel any qualms about saying that.
Judy would go to Australia. Judy would go here. I mean, I think some people felt that she--it was too much. This is going to sound like, "Marcia, Marcia, Marcia" on the Brady Bunch, too much "Judy, Judy," but people identified DIA with Judy. DIA in many ways was Judy, at a point in its history. The subsequent leaders in DIA didn't have that kind of baggage with them. I was the president of DIA. As I said, talk with Pat and Denise, because I can't remember who won the election the first time after Judy left. But there was a big void for us, because first of all, her job allowed her--because she finished at three o'clock, her job allowed her to attend loads of meetings that the rest of
Jacobson
What kind of meetings?
McQuade
Oh, God. It's really hard for me to remember. She would go to meetings; it might be with other disability organizations. Say with the Wolf--with the conference at that school, Judy was involved with the meetings planning for that conference. She attended planning meetings.
Jacobson
Is that the Policy in Action conference?
McQuade
Is that the policy in--?
Jacobson
Action.
McQuade
I think that might have been that. I think that's what it was. That's really interesting that you remember that. She did that. She was the spokesperson. She was able to attend the meetings, so Judy was the one that everybody met and knew. The rest of us, we would be at meetings--as God is my judge, I would never have gone out to speak any place, only when she couldn't make something. I used to say to her, "How come I get to go to Newark, and you're going to Australia?" as a joke. But it's like she also, without us thinking about it, she mentored you in way, because I had to go on Malachi McCourt's radio show to promote the conference. I almost choked to death I was so nervous. [laughter] The first time I spoke to a parent group, I was so nervous I felt myself choking. I said, "Could somebody get me water?" Parents are running all over. We're at a library. I thought, "I'm going to just die in front of these people," because my throat started to constrict. I just was like a nervous wreck. [telephone rings] Sorry.
Jacobson
We just took a break.
McQuade
While we were on break, something came to me about your husband Neil, that I remembered. We went out to Hofstra [University]. I took Judy. Judy was then either able to be lifted or somehow transferred with some help into my little car. We were running out to Hofstra and we were there for, I think, the day. We must have been talking to disabled students on the campus. I believe we were talking to them, encouraging them to organize or to get involved with DIA, something like that. I think one of the things I was saying to you is that what's so frustrating is that you remember doing something, but you don't remember why you were doing it.[laughter] I remember Neil; that Neil always pushed himself backwards with one foot.
Jacobson
Neil--
McQuade
Jacobson, your husband. I was saying to you as we were talking before. I know I met Neil out there, and I know we were going out there one Saturday to give a talk. Judy was going to be--I was driving. I was coming with her, but thank God I didn't have to talk. Judy was giving a talk.
Jacobson
Did you go with an attendant?
This is the funny part. I can't remember who was with us. I can't remember whether Larry came with us--my husband, Larry Weissberger--or somebody helped her to get in the car, and when we got there somebody was going to help her out. I can't remember that. I think there was somebody else with us. I don't remember if it was Susan Marcus. I can't remember that part of it. But I know we were out in Hofstra to organize people and to talk about disability rights. Do you remember Frieda Tankus?
Jacobson
Yes.
McQuade
She was one of the sweetest, just kindest, most loving human being. Do you remember her brother Morty and everything?
Jacobson
Yes.
McQuade
She was a student at NYU. We were at NYU one time; we were doing something. I know that Judy was there and Frieda. But this is the stuff--we were always going someplace, and whether it was we were talking with students or we were helping meetings. Somebody could get us a location, and we were meeting at that location because somebody had a connection. I always remember us running around here and there.
When we turned off the tape, I was talking more about Judy and when she went out to California. She was so, so vital to the functioning of DIA. It wasn't that Judy did everything alone. That certainly wasn't the case. But when she was going away, or going to meetings where she was going to be away for a time, there was in some ways a void. Things still went on. We still held meetings and all, but it was--you felt--I felt--I can't speak for every single person, but I felt kind of a loss, if not direction, not as much of a--I'm trying to think of the right word--a boat without its rudder I guess is the best way. She was such a strong leader. We had different roles, and we continued. It wasn't like she was totally gone and therefore we knew we had to establish a new president. There was a void. That's really the right way to say it. We were still working on things, but she would come back and we would catch her up, and she would tell us some of the things that were going on.
That's another thing too--DIA, I think it was after Judy;s time in DIA, in terms of being an officer and everything--we worked on the Flynn, Bloom, Koppell Bill which was New York state's civil rights law for people with disabilities. That was the first human rights law in the state. I know we worked on the local city human rights law, to have a city human rights law. That's been amended at different times. But I think the state one came first and then the city one.
Jacobson
What year?
McQuade
State one, I do remember. I think that was 1975. The city code, in terms of that--I may be saying it wrong--I don't remember exactly when we did it, because we did spend a lot of time working on the state human rights law. We were probably working on it like--it doesn't always pass in one session. Probably '74, '73, '74, and then '74 or '75, something like that. But I'm pretty sure it went into effect in '75. But the thing I was saying also about in terms of Judy's presence, no one since that time--Frieda Zames was president for quite a while in DIA; a lot of times, the person who was the president of
What I was saying to you about some people, I think for some individuals they felt bulldozed by her. I didn't feel that. People knew we were close, and people would talk to me. I didn't feel like there wasn't a free exchange of ideas. There were disagreements at times on different things. I don't remember what people would--
Judy and I, our disagreement was when we were first working together. Judy felt disabled people always got form letters, and she didn't want anybody to get a form letter. I was the secretary. I had to do all the letters, and I knew we had sacks of mail! I remember, this was one thing, it's kind of an amusing anecdote. I said, "Judy, when I come and work, either I come at night or I come on the weekends." She would dictate, and I would take the dictation, type the letters. "Maybe we're getting ten letters done." I said, "We can't respond to all these people doing it this way. There's just too much mail." She said, "I don't want to do that to them." So we would continue on. I guarantee you there is mail--I don't know where it is--that has never been answered back from like 1970 and '71, because just hundreds and hundreds of people wrote letters to her.
Jacobson
To where?
McQuade
To 175 Willoughby Street.
Jacobson
From where?
McQuade
Some letters were from official people and we were responding. It could be on legislation. It could be about a meeting. Some were just individuals telling her about a problem or a concern. But that was one of the things where we--and I still believe she was wrong on this one--I said, "Better to get some kind of a response and acknowledge that there's so many letters that we just can't answer each one individually, than none."
Jacobson
Were they local or state?
McQuade
Some were local. Some of them I don't think we ever even got through all to look at where they came from. As I said, some would be from officials, some would be from people from other organizations, some were individuals writing about a concern or whatever. But that was one thing I remember. She wanted so much to respond personally to everyone.
The thing I was going to say is that no group of people can work together where they agree on every strategy, where they agree on every emphasis that eventually is worked out. But I also think for some individuals--I think sometimes some of it might be a little bit of jealousy. I mean, you know Judy. She is a force, sort of like that movie, "A Force of Nature." [laughter] She has such capacity for--some of it is ridiculous. I got stuck staying over with her once. She told me--this is another funny story--she says, "Come over after work. We'll eat, and we'll do some more letters." So I come over and I said, "Judy--"
I started to tell one of my Judy Heumann stories. This is probably either late '70 or early '71. I was working as a legal secretary. I come home from work in Manhattan, come to Willoughby Street. I said, "Judy, I can't always find parking and curb cuts are not that plentiful and I need to be on your block." She says, "Don't worry about it. Just pull into an empty space in the parking lot." This is designated parking for the residents of the building. I said, "Judy, are you sure somebody's not going to be upset?" She said, "Don't worry about it. They'll ring the bell, and you'll just come down and move the car." So we're working. It's like ten thirty, eleven o'clock at night. I said, "Judy, I have to go home. I'm exhausted," so I go downstairs, somebody's blocked the car. An irate person whose space I have taken.
So now I come back up, and I say, "Judy," I said, "I can't leave. I have to go to work in the morning. I don't even have clothing." I think she lent me a nightgown or something. Judy's smaller than I am, so she says, "I'll lend you a dress." I said, "Judy, I don't know that I'm going to fit into your dresses." So here we are. I take a shower. I borrow a nightgown. She's getting calls at two o'clock in the morning, and she's talking to people. I said, "Judy, I'm telling you, I would hate to be your roommate. Who called?" When somebody calls me at two o'clock in the morning, I think somebody's died. I don't view this as this is a time to chat with your friends. [laughter] At any rate, there are constantly these calls. I get up in the morning. I have to borrow her dress. Thank God she had one dress that fit me, and I have to go to work. I'm just praying to God that my car is not going to have like window broken because I've taken this person's space. That was Judy, "Don't worry." Another Judy story--
Jacobson
Let me add a little bit about that. Willoughby Street is right across from LIU.
McQuade
Right, right.
Jacobson
--and it's a rough neighborhood.
McQuade
Right, I can't speak for today, but it was--
Jacobson
It was not like an upper middle-class neighborhood.
McQuade
No, no. The building I think probably had some people from the University in it. But yes. When I think of Judy, I always think, her poor parents. Judy met everyone in the world, and coming over, Mr and Mrs Heumann's house was like the waystation: "Oh, you could stay with my parents." One time, this is post-DIA, I was working at our center. We changed our name. We were Brooklyn Center for Independence of the Disabled.
Judy says, "Listen, we have these German visitors coming over." They were Green Party people and they were involved in disability rights in Germany. "Could you take them around?" I said, "I guess. I don't know exactly what they would want to do."
There was one person who used a wheelchair and other people who are ambulatory. Where did they want to go? They want to see the Indian Museum. The Indian Museum now is down where I work. It's in the Smithsonian. It used to be the Customs House. It's
There's a person that--do you know the expression, "the person had a face that would stop an eight day clock?" This is an angry looking person coming along, and I'm thinking--because we had to ask a question where's the entrance or find it exactly. Who do these Germans go up to but the last person in the world any native New Yorker would go to ask for anything. And the person was very nice. I'm thinking, oh my God, this is probably some kind of a drug addict or a person who's going to see all these white people and just be furious that what are we doing up here. We go to the museum; that all works out fine.
Then they want to go and eat, so I take them to a Cuban restaurant, Victor's on 52nd Street, because I figure I know it's got a flat entrance. I told them the bathrooms are not accessible, but it's a flat entrance, and I figure Germans don't want to eat German food if they come to the United States, so let's give them something different. We had a nice meal and everything and now we're going home, two wheelchairs in the car. We're driving back to Mr. and Mrs. Heumann's. When we get home, I forget where the hell we put my wheelchair. Maybe my wheelchair was in the backseat, and they sort of sat around it. I think that's how they did it. And the other wheelchair was in the trunk. We get to Judy's parents' block, all the houses look very similar, and I couldn't quite remember which is Mrs Heumann's. [laughter]
This is like ten o'clock at night. We rang one bell. They said, "No, the Heumanns are over there." So we find Mrs Heumann. The way they closed the trunk, it broke the lock, so now we're there, this German person's wheelchair is locked in my trunk. Luckily mine wasn't, because this really would have been terrible. So here I am. I'm living by myself. I said, "Look, I'll go home, I'll call a locksmith tomorrow." Eighty-nine dollars later--this is a Sunday trying to get a locksmith--eighty-nine dollars later, I've got the wheelchair out of the trunk. He had to break the lock, put a new lock on it. Whatever. It was just so expensive. I called the guy and said, "Look, the person who this chair belongs to has to fly out early tomorrow morning, can you please come today?" So he came, but it was expensive. So then I drive over to Mrs. Heumann's, drop off the wheelchair. The next time I spoke to Judy I said, "Judy, you owe me big-time. This was eighty-nine dollars to get this damn wheelchair out of the trunk."
Jacobson
Where was Judy?
McQuade
I believe in Washington or California. She just called me up. I mean, it's a typical Judy story. I said, "If I were your parents I would kill you." "All these Latvians are coming in from the weekend, Ma. Could you put them up?" I said to Judy, "How do your parents stand this? You're not even there. They don't know these people. You have all these people traipsing through your home. They're doing research or visiting." I said, "Listen, the next time you have a group of people, Estonians coming in, don't call me. I don't want to go through this again." They were very nice, but it was like, "Oh my God, I can't believe it, that the trunk is jammed." Unbelievable [laughter].
At any rate, going back to the days with DIA, we had subcommittees that would meet, and more than anything else, I think we were supporting pieces of legislation in our state or attending meetings to deal with specific issues, or make sure other people in the community were aware of the issues, and we agreed to function on them. Ronni Stier was doing some kind of research on transportation, and we used to go to her house.
Jacobson
She was on the board.
McQuade
Yes, she was. We used to meet at her house a lot, because she couldn't get around that easily, and so we met at her house. I met Larry, my husband, at her house. It was really funny. Of course, he was married to somebody else then.
Jacobson
What year?
McQuade
That was probably '97--it was before we incorporated. We may have had two vice presidents. You'll have to ask Bobbi Linn. I kind of remember Bobbi Linn being a vice president also. I think Larry was vice president of communications or something.
Jacobson
I do remember that, but I remember you and Angela as vice presidents.
McQuade
See, Angela might have been--as I said, I think I was president once, but it may have been that she was a vice president. I have this recollection sort of of Pat [Figueroa] being vice president and me being president once. Then maybe he became president, or else he was president and I was vice president. I don't remember. I just know that both of us said whoever was elected we would support. In other words, if he was elected I would support him, and if I was elected he would me. He came up with that plan of borough DIAs, to deal with the fact that there were transportation problems.
Diversity in DIA, conflicts, and romantic involvements
JacobsonOne of the things I wanted to ask was how diverse of a group was DIA?
McQuade
I would say its leadership was largely white, middle-class, what would be considered middle middle class, or even, I don't think lower middle-class today. But women. That was the unique thing, I think, about the movement also. Women were in positions of authority. Women were the dominant group. When we talk about disability, there were Hispanics. I don't remember very many black women, except Angela Thompson. There were people who were--Pat Figueroa. I think of Pat as Hispanic, Puerto Rican. I identify him more with being Hispanic. Fred Francis. Jimmy Lynch, I believe he was on the board at one time. Pat and Fred Francis. There were people who sort of came for a time and left. But largely--and I would say--a lot of Jewish women. Bobbi was Jewish. Judy was Jewish. Susan Marcus was Jewish. Larry was a man on the board, only nondisabled man, Jewish.
There were men involved, but the men who were leaders in DIA would have been Pat, and Fred Francis, Jimmy Lynch. There were some other fellows that sort of came and went.
This you may have to take off the tape, I don't know, because I don't want to embarrass anybody. But also some of the conflicts that happened as I remember it, were the guys who Judy got involved with romantically. As the romance went south, the disagreements got stronger I think. I really didn't date anybody; I wasn't romantically involved with anybody in DIA. Judy and I, we used to talk sometimes, because sometimes there would be like--you would be at a meeting, and there would be a discussion and people would get very heated. You could get heated without any romance, but if it was a male and Judy and them disagreeing, we would talk sometimes. Judy may have a very different recollection of this. I would say to Judy, "I think part of the problem here is that the two of you are dating. Not that you can't date people that you work closely with, but I think sometimes that that gets in the way with these guys." I think Judy could do it and not personalize it, but I think it was harder for the men not to let their personal feelings sometimes color. It had a negative impact, sometimes. I don't mean it destroyed anything, but it would sometimes color how the disagreements went on things.
That's my recollection, because I remember we would talk sometimes. "What's going on?" It would seem to me that people would sometimes allow their personal feelings, pro or con Judy, to affect some of their--
Jacobson
Do you remember any of those types of conflicts? What were they about?
McQuade
I don't know if it was earth shattering things, but it might have even been petty things, and the person would get annoyed over something. I don't know that Judy would remember. Ask Bobbi what she remembers of some of this, because I just remembered. I don't mean that she was dating every man in the movement. She and Pat Figueroa disagreed at times, and they did not date. But I know there were some guys that she was romantically involved with for a period of time. Probably a short period of time. Sometimes, you would see like they would disagree on some things and I said to her that I thought the disagreement was simply because they were not dating anymore or whatever. That I kind of remember. This was a few men very early on in the development of DIA. This was noteworthy because Judy was able to separate personal feelings from philosophical, political, or strategic planning concerns that were debated in DIA and some of the men who became romantically involved with Judy. As I said, this may be something that should get heard twenty years from now.
The difficulty also is that I think I know somebody that she was dating, but there was some other people who--I don't remember their names that there was somewhat of a romance for a short period of time. But, I think with most things, it would be more along the lines of discussions or strategies, or how do we approach an issue.
A march to the United Nations on behalf of civil rights for people with disabilities
McQuadeI'll tell you something else that we did when Judy was still there. We had a march to the UN [United Nations]. This was probably '72. It was the summertime. I remember Larry came, and his wife, and I think one or two children in a stroller. We were marching to the UN, and we were going to present a declaration of civil rights for all people with
Jacobson
What was his--?
McQuade
People who were activists and all of that. I think Pat knew him pretty well.
Jacobson
What type of disability?
McQuade
I think he was post-polio. You're asking about disabilities. Pat, I think, had spina bifida. I think, I'm not one hundred percent sure. Denise Figueroa, post-polio. Denise and Pat met at Brooklyn College. She was like a year or a couple of years behind him, and she roomed with Judy, because Judy always had roommates. I was going to say extra space. At any rate, Pat was there. I think Fred Francis; I'm not one hundred percent sure. I was there. I'm assuming Bobbi Linn was there. There was just a crowd of people. There had to be a couple hundred of us.
Julie--the police are following along--starts yelling at the police about them being pigs. It's like, this is is not a rally against the police. The police are walking along. They're not stopping us or anything else. I'm thinking, this is really stupid. First of all, you might need police protection at a certain point. Why is this nitwit--I didn't know him that well. It was like I'm thinking, what is he yelling at the police for? It's not like the police have beaten us senseless, and we're protesting the police.
We're marching along and the UN guards--we stopped at one gate, and we were sent by the guard to this other gate. We get to this gate, and you know it's hot, and we're all walking along and everything. We get to this other gate; the guard won't let us in. A pushing match--I don't know if Judy will remember this--a pushing match started between the guards and the men, like Pat Figueroa and some of the other men, because we had been told this is where we're supposed to come in. A pushing match starts.
Somehow the crowd of people that were there--I remember getting my hands caught against my wheel, my rim, so I couldn't move forward; I couldn't move backwards. I'm thinking, we're going to get our heads beaten in. These guys are not going to care. They are UN police. They are not going to care if they hit us. I'm trying to get Judy's attention, because it's very easy for things to get out of control. I'm yelling to Judy, "Judy, you got to get control. Things are getting out of hand." A captain of the guard came out. I think he was a captain; maybe he was a lieutenant. I don't know military things. I started yelling to him, "Look, we were told by the guard at the other gate to come here. That's why we're here. We were told to come here." Then Judy was talking with him.
My car had broken down that day, and a guy from my neighborhood, Billy Quinn, had given me a lift. All of a sudden I heard this voice behind me saying "You know,
McQuade, you always have your mouth open." This was the neighbor, Billy, speaking. I looked and I said, "Let's get the hell out of here before we're beaten up, because--" I'm saying to Judy, "You know there are people here with baby carriages and children." Once you're crowding in on each other--we just left. I don't know what happened after it. I said, "Nope, this is where I'm getting off." It's like falling apart. Maybe it didn't completely fall apart after I left, but I thought, this is it. This is not for me. To be beaten up for a real reason, that I could understand. But it was so scary for that moment.
Usually police don't hit people with disabilities that are obviously disabled. They usually don't. In my experience I have not--I've had some shoving matches, but I haven't ever thought they were going to hit me with their club. But this one, with the U.N. police, it's their property. They looked so angry, I thought, oh my God, we're going to really get hurt. And for what? It was like, what a moment! It would be interesting, if you interview Judy or Pat, if any of them remember this, because I'm thinking to myself, what is happening? It was the guard's fault at the first gate we went to to send us to this gate, because we thought we were perfectly right to be at this gate and everything. That was another thing we were doing.
DIA strategies, funding
JacobsonI want to ask, was there a strategy in DIA or did things just come up and you said, "Okay, we're going to decide to--?"
McQuade
I think there was a philosophy and a mission. I think strategies were for specific kinds of events or legislation. I don't think there was like a five-year plan at all. Not that I remember. I think at times, I think Pat tried--and I think it was after Judy left. I think he tried to deal with the transportation problems by having borough meetings. There used to be complaints also from some of the members about why does everything have to be centered in Brooklyn. I think we were trying to respond to that, and he came up with that plan. I forget if we ever came up with an overall plan for the year.
My sense, and this is a sense, it's not like I have a complete memory of this, was that we were more reactive to issues. Yes, we had a policy that we would picket the telethon. I think there was also picketing of the cerebral palsy telethon in the winter months. At least we picketed the telethon that Jerry Lewis had for muscular distrophy once, that I remember. That was always held on Labor Day, and I remember cutting my Labor Day weekend short to come in and picket the telethon.
But our strategies, as I remember it, had really more to do with specific goals that we were trying to achieve in the sense of--for example, say we were trying to get more curb cuts, and I know we worked on that. If we could find some of these old newsletters, that would sort of help us to reconstruct some of these things. I remember we had, for example, if we had meetings, it wasn't like it was total chaos. We would have a meeting, we would go over what are we currently working on on legislation, or anything new that's come up that we have to deal with, plans for the President's Committee on Employment for People with Disabilities. If there was a conference that either we wanted to participate in or--usually, people would ask us to cosponsor something
Jacobson
How did you get money to go--?
McQuade
We paid for ourselves; we paid for ourselves. DIA--I think there were dues after a while. I think we had dues. But anything we went to--Judy, if she was asked to go someplace, she would probably get the expenses from an organization. If it was an organization that really had money to pay for her--especially like going to Australia and all of that--she would get that paid for, but we were not a wealthy organization. I believe we had dues sometimes, and maybe people made donations, but I remember us basically paying--having the bus fare, renting the room. You would save for it, and you would do that.
People with spinal cord injuries in DIA, people with other disabilities
JacobsonThe other thing that I want to bring up was in California they got started because disabled people, mostly men, were living on campus. Many of them had spinal cord injuries. Were there people with spinal cord injuries ever active in DIA?
McQuade
I think there must have been. I'm pretty sure there was. The disabilities that I remember specifically were cerebral palsy, muscular dystrophy, like Jimmy Lynch. I don't know what Ronni's disability was. It was some kind of a unique thing. I just don't remember. I remember being--maybe it was one of the dystrophies or MS [multiple sclerosis], something like that. Frieda Tankus had--
Jacobson
I think it was muscular dystrophy. A form of it.
McQuade
Muscular dystrophy, a form of it. There were people who were amputees. Like Fred Francis was a double amputee, I think, below the knee. Some MS, some people had MS. Polio, there were a lot of us with polio; there really were.
Jacobson
Do you have a sense of why the make-up was the way it was? Why there weren't that many spinal cord injured people?
McQuade
I think the vast majority of us in the organization at the very beginning were people who had been disabled--and this isn't all, because Fred Francis was newly disabled--who had been disabled in childhood.
We were changing the tape as I was saying to you, it's a question I never ever thought about. It's very interesting, and one of the things that I started thinking about as you were asking that question and I was trying to come up a response, is I think in many cases, at least at that point, a lot of people with spinal cord injury, it's usually in adulthood or young adulthood. Depending on where you are, the ones who are veterans
Jacobson
Bob Muller.
McQuade
Bobby Muller, okay. I remember he got in touch with Judy. I believe probably at that point he was anti the war. I remember he was over at Judy's house, and Mr. Heumann, Judy's dad, had been a marine in the Second World War at Guadalcanal, and they were sort of swapping stories. Mr. Heumann was showing him some of the pictures from the Second World War. Again, how people found out about us, maybe they read something in an article in a magazine, or in a newspaper, or someone mentioned her. He came over, and he was interested in disability rights, not just veterans' rights. I think that's part of the reason a lot of persons who were spinal cord injured, they were veterans, at least at that time.
Later on--this also happened--usually, it's young men who were in diving accidents, swimming accidents. Depending upon the socio-economic group, like Goldwater, lots of black and Hispanic young men, who have been victims of gunshot wounds. Whether they were perpetrators of crimes and were shot, or they were shot by somebody, you can ask Marilyn [Saviola], depending on the social strata. It could have been through gunshots. Car accidents are big, a lot of male amputees, motorcycle accidents.
For women too, in our area, a lot of people were coming through IRM, Institute of Rehabilitation Medicine, the Rusk Institute. I think, too, they identified more with each other as people with spinal cords injury, and they didn't identify really with other people with disabilities. I think probably your experience, my experience in the hospital and everything, post-polio, cerebral palsy, other kinds of physical disabilities, your experiences were with people with more than one type of disability, mostly physical, of course. A lot of polio, but not just polio.
Jacobson
You went to the clinic and school--
McQuade
It could be kids with clubbed feet. Right, school definitely. School was congenital amputation, arthritis. That was the other thing: juvenile arthritis, different kinds of physical disabilities. I think for the spinal cord injured, you were usually a teenager or older. You tended to identify with the people you were rehabbed with, but you weren't identifying with a larger world of disabled.
I think that's the other thing, too, when you're newly disabled, you don't think of yourself as "I'm a person with a disability." You probably are very much hoping to walk again. You're in denial what's really going to happen. In your own head, you want to go back to the world that you came from. You don't want to associate with the crips, to use the old term. You really are aghast that you're in the wheelchair, and people usually come to terms with that, but they still may not want to identify with other people with disabilities. Especially disabilities that are so foreign to them. They're not going to identify with a person who's blind, not initially.
Sometimes, depending upon your life experience, you may be the only para on your block, so to speak, and that's it. People get to know you. They realize, well, this is Joe,
DIA during Judy Heumann's absence, working at Independent Living for the Handicapped
JacobsonWhat do you remember of the time when Judy left to go to California? Do you remember talking about her interests in--
McQuade
I'll just say how I think of it at this moment. My mother has Alzheimer's. It's so scary to not be able to remember more of this.
Jacobson
Well, it was a long time ago.
McQuade
I know. I have snatches. I know we did talk about it. I know that we must have talked about that we would miss each other. This is the other thing--we became friends, so you were talking about men; you were talking about religion sometimes; you were talking about your upbringing. You became friends, so everything wasn't the movement all the time. I think probably knowing that I felt a little scared, like were we going to be able to go on. I probably talked about that. Knowing Judy she probably was like, "Sure, you'll go on." You know how Judy is. She would buck you up.
Jacobson
Were you--?
McQuade
I also think Judy had decided to go back to school. That was the other thing. She was going to work on her master's degree. I think that was the other part of it in going out there. She had decided that she wanted to get a master's degree. I don't remember if it was in--
Jacobson
It was public--
McQuade
--administration. Yes, I was going to say some kind of administration, but it was public administration, because she felt that she could do more with that kind of a background. I know she didn't think everything was just going to fall apart in terms of DIA and all. That was the other piece, that she didn't want to teach any longer, and she felt that if she had a degree in public administration, she could do more things in terms of the movement. That's the best I can put together.
Jacobson
What happened to DIA?
McQuade
I know we formed a DIA in the Bronx. That never flourished. We formed a DIA in Manhattan. What I remember--and I think was when I was president--what I remember was constantly hearing about the elitist people in Brooklyn from the Manhattan group,
Jacobson
Who was in the Manhattan group?
McQuade
I believe Phyllis Rubenfeld, Shirley Morganstein, Frieda Zames, as far as I remember. Those are the people that stand out most. There were other people, but it's like, I don't remember. Those were people that I remember the most out of that. There were people who would come to meetings--this is another digression--but this will give you an example of how things really were, because a lot of time people came, and you wouldn't know them all. They wouldn't be on the board, but they would be members. Susan Fonfa, she's now the executive director of Fed Cap.
Jacobson
Of what?
McQuade
Fed Cap, it's a rehabilitation. She was the director who hired me at the center. It had another name. They shortened it to Fed Cap. What was it? Federation of the Handicapped. You understand why it's now Fed Cap: Federation of the Handicapped. You would remember that. They had decent rehabilitation programs, because they went in for--one of the things that they tried for was homebound typing, where if you wanted to earn a real living, you actually could have. This is one of those disappointing moments in your life. When I went to work for the center, I was like the staff person. It was Sue and me, and we had a part-time secretary. We had Edmeé Rodriguez, who was our intern and board member.
Jacobson
This is the Center for Independent Living?
McQuade
Right, we were called Independent Living for that Handicapped, that was the name.
Jacobson
In Brooklyn?
McQuade
In Brooklyn, right. That had gotten one of the contracts from Office of Vocational Rehabilitation. This was not the Part B money. VESID [Vocational and Educational Service for Individuals with Disabilities] was OVR then, Office of Vocational Rehabilitation. This is '79. I came to work there in '79, but the processing of the contracts, or the work to get the contracts probably started, was probably all '79. So at any rate, they were one of the places funded. CIDNY was funded. The Center for Independence of the Disabled in New York, was really the idea--I think it was the idea--what is that woman's name? I think Anna Fay was one of the people. It was the National Paraplegic Foundation. Even though there was some post-polios involved in it, like Carr Massi, Anna Fay--I forget if Julia Schecter was involved, the late Julia Schecter, was involved in that, too. Basically, people knew that there was a real need for attendants for independent--let me not be prejudicial on this one. You could be independent but not want to spend a lot of time hiring, training, finding your own PCA. You may choose to be with a home care agency that will do all that for you and all that you would have to do is--through your Medicaid, they'll provide it. Then there were people like Marilyn Saviola who have a lot of resources and prefer to find, train, hire, fire their own personal care attendants. They have the resources, and they have the resources in the sense of connections; they know where to go. There were a group of people like that.
So this was a pilot project. Center for Independence of the Disabled in Manhattan, really was a home care referral program. It wasn't really an Independent Living Center, starting out, as I recollect it. National Paraplegic Foundation, people worked on getting a grant, and the grant was to establish this attendant program, attendant referral. They would screen; they would get a list of people; you would hire, train, pay, hire, whatever. Or maybe they dealt with the fiscal part of it, but I'm not sure. Eventually what happened is there were some scandals with the home care program that the city was running. Also, the unions were trying to organize the workers. So, what they decided to do--the city, not to have them working directly for them--was to offer contracts to non-profit agencies to run home care programs.
Rivalry between Brooklyn and Manhattan, leaving DIA
McQuadeWhere the hell was I? What was the last thing I was talking about? I'm losing my train of thought. We weren't back to why there weren't so many paraplegics in DIA. Then the next thing, you asked me a question about when Judy left.
Jacobson
DIA.
McQuade
DIA. Right, when Judy left, and we had the borough DIAs. I don't know if there was a Staten Island DIA that ever got off the ground, or a Queens DIA. But I remember the Bronx had one, Manhattan had one, and we had one in Brooklyn. All right. One of the things that had happened was there was this jealousy. I don't know any other way to explain it. Or this sense of paranoia about Brooklyn as opposed to Manhattan. My sense is it has to do with the personality of some of the people rather than any basis in reality. That would be my take on it. I spent time meeting, going over, and making sure everybody felt decisions were not being made just unilaterally. I think we started to hold some of the meetings in Manhattan. Then more--
Jacobson
At the Institute for Rehabilitation Medicine at New York City Medical Center?
McQuade
Right, right. Then Manhattan was where we met. The feeling was that most people, if they could travel on their own, it didn't matter where you went, and if you couldn't travel on your own, Manhattan was an easier location to get to. People had connections to IRM.
Jacobson
I just want to interject that from what I remember growing up in New York in the Bronx, there was always some type of rivalry that was not related to the disability movement. Between the residents of the borough, there was this rivalry.
McQuade
I think there was always like when you were going to Manhattan or going into the city, it was sort of like the boroughs did not identify with Manhattan. That was true in Brooklyn. But I think there was like--
Jacobson
And the Bronx, nobody wanted to go to the Bronx.
Right, right, that's true. The thing I was going to say though was that we then started meeting in Manhattan. There were also, on occasion, meetings I think at 175 Willoughby Street. Those are the two places I remember where we met the most. Newer people came in. From Manhattan, Kip Watson came in. I'm blanking on his wife's name. They weren't married then.
Jacobson
Emily.
McQuade
Emily. Emily came in. So there was new membership that came in. He had a hearing impairment, and I think was post-polio. Emily, I think, was cerebral palsy. Phyllis, post-polio. Shirley Morganstein, post-polio. Carr Massi, I remember her with National Paraplegic Foundation, and Anna Fay and all of that. This is one of the things that happened. There was another organization that was formed, and I remember being a part of that too. I forget what the heck we called it, but I think they were trying to have more of a coalition where other people in groups could come in.
Jacobson
Was it [inaudible]?
McQuade
No, that was national. That was an attempt--they did, they did form the American Coalition of Citizens with Disabilities [ACCD]. That was national, and that was probably--
Jacobson
But I think it was Policy in Action.
McQuade
Maybe, I'm not sure. Maybe it was. I think I was always taking minutes of things, as I remember. But I just remembered we were working on some things. I know when I left DIA, I left to go back to school. I'm going to be very candid. School gave me a pleasant way of leaving without questions being asked as to why I was leaving. I knew you couldn't do that and do DIA, but in reality, I found it totally draining.
The meetings, there were always conflicts. I mean, I felt like after a while we just spent hours and hours and hours debating things. We make an agreement, we come to terms, and then--not that you can't do it according to Robert's Rules [of Order], and I don't know how well we were following Robert's Rules, but we had these endless meetings. We would come to an agreement on something, and then the next meeting we would be back at it again. I just felt like I don't want to spend my life spinning my wheels, pardon the expression [chuckle].
Sometimes, there are negative forces at work. I don't even know if people realize what negative forces they are. There was too much turmoil. Not that the organization was falling apart; it wasn't. But for me, I don't like constantly rehashing the same things. You make a decision, maybe once you could reconsider something, but it just seemed we kept going back to things, and things just wouldn't get laid to rest, and you wouldn't move forward on it. It really, for me, it was the time to move on.
Strategizing for accessible mass transit, participating in 504 demonstrations to force Secretary Califano to promulgate the regulations
McQuadeThe organization obviously went on. The organization brought--along with Eastern Paralyzed Veterans Association, but EPVA's lawsuit was the one that won on the state law--they brought the lawsuit against the MTA. They did it under 504--the DOT [Department of Transportation] regs.
There was also a big demonstration in the end of the summer of '78 for a thing called Transbus, which was a low floor bus. Now, low floor buses have been bought by the Transit authorities, started to be used in Munich. What we wanted, way back when, and they said it couldn't be done, was that Ford, General Motors, all these places--not so much Ford, General Motors--they didn't want to retool, bottom line. Then there were debates about later on when we were--there was a transportation disabled committee formed out of the--the lawsuit that was won in '83. There was a coalition called Mobility Through Access, and individuals and DIA and EPVA and any other groups that wanted to push for accessible mass transit, we worked together.
There, there was a strategy, and we basically worked to lobby the state legislature to create an accessible transportation system. What happened was EPVA won the lawsuit under the state building code, that they had to make subways accessible when they renovated them. Immediately the MTA went to the state legislature to get exempted from that, and we all opposed it. They combined DIA's lawsuit with EPVA's lawsuit.
Jacobson
What year was this? I believe 1988 was the year the lawsuit was won.
McQuade
Jim Weissman would have to answer this, or Denise Figueroa, because part of the time she was working for the Mayor's Office for People with Disabilities, and part of the time she would have been working for EPVA. As far as I remember, that probably was from--let me just backtrack a little bit. From the time I started working for the center in '79, transportation was one of the big, big issues in the city. It was a 504 committee that came up with a 504 plan, because 504 required that buses and things--if you purchased new it had to be accessible.
Jacobson
Were you involved in the 504?
McQuade
No, I wasn't. We supported it, but there were other people on the committee that had been working on it, like some people from our board. Muriel Zardowski was on that; she was on our board. She had MD [musclar dystrophy], I believe, and her husband Vinny Zardowski.
Jacobson
What board?
McQuade
The center's board. I worked for the independent living center from the fall of '79 until December 14, 1992. [Editor's note: In the eighties, the name was changed to Brooklyn Center for Independence of the Disabled.]
Jacobson
But that 504 demonstrations--
Okay, the 504 demonstrations--we're talking about two different things. The demonstrations in '77, to force Secretary [Joseph A.] Califano to implement, to promulgate the regulations?
Jacobson
Yes.
McQuade
I was in college. I wasn't sitting-in. There were people who were sitting-in. They didn't sit-in for a month like you did out at Berkeley. I went and demonstrated outside. Those people who could demonstrate outside, demonstrated outside, and then there were the people who agreed to sit-in. I think Pat Figueroa and some other people--I don't know if Denise sat-in--but there were people who were sitting in on that. It was a coordinated national effort, I guess, but I don't know if Berkeley took the title for the longest sit-in. A guy who came to work for us at the center afterwards, Ben Welton--he became a Lubavitcher.
Jacobson
A what?
McQuade
One of the Hasidic sects.
Jacobson
Lubavitcher.
McQuade
Lubavitcher. They support Israel, and they believe--they're like Chabad house.
Jacobson
Okay.
McQuade
So he came to work for us, but he had been in that sit-in. He knew Judy Heumann and all of that. He had been in that sit-in out in California. When he moved east--he was from the Midwest somewhere--and he came to work for us, we discovered he had been in that sit-in. He knew Judy, and he knew different people I knew.
At any rate, I was one of the outside demonstrators, but I wasn't part of the sit-in. There were other people taking the lead on that, because I wasn't involved with DIA at that time.
Jacobson
You weren't?
McQuade
No. I left DIA. I think I kept up my dues--
Jacobson
Where were you?
McQuade
I was at NYU; I was studying to be a rehab counselor. During that time at New York University, there were access issues. We formed--this was Pat who came up with the name. There was a signer of the Declaration of Independence, Stephen Hopkins, who had some kind of a disabling condition. I forget what it was. Pat found that out, so we called--Pat got his Master's Degree from NYU School of Public Administration. He came up with the idea of having--
Pat--I know--I forget if Marilyn Saviola was involved. I'm going back for one second in terms of the sit-in at the local--it was HEW [Health, Education and Welfare] then, HEW offices, at 26 Federal Plaza, I think, is where the sit-in was. Pat, I'm positive, was one of the people involved in that. He would probably be able to tell you who else were the prime organizers, but I know that there were people who demonstrated outside for a bit, and then there are the people who were going to stay the night, or however long it was until Califano promulgated the regulations. So, I know I went to the outside demonstration. But during that time also--Pat will have to tell you this--I can't remember when I went to NYU, which was the fall of '75--I don't remember if Pat was still finishing off, and I believe he was. I think he was finishing off his Master's Degree. He was working on that. There was a fellow who--I don't want to mix these two things up. Several things were going on. There was a 504 committee at the college; an implementation committee for 504 regulations were implemented. Once they were implemented, then the university had to have disabled students on this committee. There was a law student, Michael Schwartz,
[Portions of the tape inaudible through the end of Tape 5B. Some text added by interviewee after interview.]
He became a lawyer. He was deaf. He was on the committee. When we went to school, Pat came up with the idea of us calling the disabled students organization the Stephen Hopkins Society. That was our disabled students' organization. Pat was involved, and I was involved. At some point, Denise Figueroa came to work at the college in the disabled students' office, as I remember it.
That was the other thing: we were involved in hiring the disabled student advisor. It was the student's office, and we were involved in hiring a disabled student advisor. The man in charge of the student activities office spoke with disabled students.
Marcie Goldstein was at NYU, and she was in the rec program. I think Denise came to work there, as I remember it now. I think I had graduated when she came to work. I think she was working with the disabled student advisor that we hired. He was not my first choice. At any rate, Bobbi came from the rehabilitation counseling program. I think she was--she graduated--because she was working at the Institute for Rehabilitation Medicine at New York University Medical Center.
Jacobson
How did this come about?
McQuade
Okay, when I went there, we were over in the East Village, the rehabilitation counseling program was in the East--and there was a ramp to get into the program--the kinds of things we were looking over when we were there were program accommodations for students. I felt there should be a disabled student advisor. Several things happened. In '78, there was this big demonstration in support of transbus. It was by the UN, it was on First Avenue. Participants blocked First Avenue at rush hour traffic. The point was that we wanted the New York City Transit Authority to buy this bus. So, the strategy that was worked out was that people who were willing to be arrested would not leave when the police told us to leave.
Who was--?
McQuade
The late Phyllis Rubenfeld, as I remember it, was one of the people who were organizing the demonstration because she was a board member of the American Coalition of Citizens with Disabilities. I used to go to those meetings when I was a borad member of DIA--I used to go to those meetings. I don't recall being a board member. Judy was on the board. [I knew] a variety of people who were on the board. But I remember attending the meetings as one of the delegates from New York, I was in DIA then. I think that was an effort on the part of ACCD to enforce some section 504 requirements for proper access in the transit industry by requiring transit providers to purchase this accessible bus. DIA people were involved in it. Bobbi was in that demonstration, I was in that demonstration. It was a non-violent protest, of course, with civil disobedience. When the police arrived they dragged us from the street and those willing to be arrested kept going back into the street. I asked the cop who pulled me out of the street, "Are you going to arrest me, or what?" I went back into the street. He said to me, "Don't worry. You're getting arrested." He put his foot--wedging it in the front wheel of my chair--I couldn't move my wheelchair. So I couldn't go forward. When reinforcements arrived he told two cops to arrest me--one was a black cop and the other was a white cop. So they're walking away, pushing my chair and they're apologizing all the way to the police car. I was about to get into the police car, when Phyllis yelled to me to refuse to get in the police car and so I was lifted into a "paddy wagon." I was taken to an accessible police station on 51st Street and issued a summons for disorderly conduct and released. But there was TV and newspaper coverage of the incident.
III. The Development of the First Independent Living Center in New York, Working for New York City Transit
American Coalition of Citizens with Disabilities [ACCD]
Okay. Let's just briefly go over, what do you remember about ACCD?
McQuade
We were in Washington. I suspect that we were there around the time of the President's Committee. I don't know that we went there for a separate meeting the first time. We were discussing having a national organization.
Jacobson
What year?
McQuade
I'm suspecting that this is like '74? The only reason I'm saying that is like '72, we were focusing on the Rehab Act, and '73, again, all the efforts were really to mount the demonstration to put the pressure on to get President Nixon to sign the Rehabilitation Act of 1973. So I'm suspecting it was the next year, '74. I think it was in the spring. Various people were gathered and there was discussion about the need for the organization, the structure, things like that.
In some ways it struck me as kind of funny. There was one discussion, since it was cross-disability, about people with mental retardation, what if somebody who was mentally retarded was elected to the board. I remember people were talking about it, and I remember one of the things was--I was talking to someone, or else I was talking in the group, I can't remember, and I said, "Look, it's democratic. People can vote for whomever they wish. If they wish to vote for somebody who has mental retardation, so be it. People are going to make judgments on who they think is the best person for the job. It's not something that we have to be fearful of." It's the democratic rule, basically. I remember Judy was there. Phyllis Rubenfeld was there. I mean, I would tend to think most of the disability rights leaders of the time were there. I didn't know everybody. I knew the New York people. Judy knew more of the people, because she had been traveling all over the place around the country, attending different conferences and everything.
I think the structure ended up being that there would be two delegates, I think, from each--I don't know if it was region or each state. I forget how that was organized. I tend to think region, like using the federal regions, because otherwise, you would have like a hundred people. I have a feeling we went by the federal region, but I know there were delegates from the localities. In some ways NCIL was sort of like that. I wasn't involved in the ACCD board, so anything else about that--I was involved when we were getting it together, and I certainly supported having a national organization. I don't know if I was president then of DIA. As I say, I can't remember. I ran for president, the '73-'74 year, because I think we held elections every year. Or it was the '74-'75. I know I left DIA the fall of '75.
Jacobson
I don't remember Pat Figueroa as president.
McQuade
I don't know--
Jacobson
But I remember you as president and--
McQuade
And Angela, right?
Jacobson
Angela.
McQuade
I think when I was president, I think Angela was one of the vice presidents and I don't know if I ran--maybe I ran for two years. Maybe it was '73-'74 and '74--
Jacobson
I went back to grad school in '76, and I dropped out--
McQuade
I went back to college. You went back to grad school.
Jacobson
Then in late '77, '78, I moved--
McQuade
To California. Yes, because I remember we had lunch around that time, before you were moving. Were you going to be getting married when you were moving, or did that happen after?
Jacobson
No.
McQuade
Had you met Neil then?
Jacobson
I knew Neil from camp. It was one of those things where you knew everybody. When you met, you knew who they were. There was already an idea, but we didn't hook up until much later. But I want to get back to you. Were you more involved in ACCD?
McQuade
In ACCD?
Jacobson
Yes.
McQuade
Not terribly. I remember being there one year, and we were trying--I think ACCD now had been formed, and there was some issue that ACCD wanted the support of the membership on, as I remember it. I know Marcie Goldstein was there. I think Marcie and I were sharing a room, I'm not sure. I don't remember if Denise Figueroa and Pat
Figueroa were there. I remember I was there, and Marcie was there. We were from DIA. I believe that's what we were representing. There had also been this group--as I said, there was a group that we formed back in New York. Carr Massi was involved in it, Anna Fay. A lot of people that were at IRM [Institute for Rehabilitative Medicine], and we used to meet there. Again, I think a local coalition, but I think it was relatively short-lived. We were trying to get the people to support a position on something, and for the life of me, I don't remember what it was.
There was a dinner; we were at that. I remember I was supposed to stay back in the room for a time, different ones of us had agreed to do that in case anybody came around with questions or wanting information on something. Somehow, we met with this group of people in a room. I think it was our room; I'm not sure. I know Phyllis was there. Somehow--which I didn't know until I guess it was after dinner--somehow I had annoyed Phyllis over something that I had said. I guess what it was is that at the meeting, whatever we were trying to do to get these people to support it, I kind of felt like people weren't ready yet to say "yes" or "no." They wanted to think about it. My feeling was Phyllis was pushing too hard. I remember saying something like, "Look, I can stay back here in the room, and if people want to think it over and then come back and tell us, they can do that." Something like that. That was it.
The group broke up. We were going down later to a dinner. We went to the dinner. Phyllis said she had a headache. I don't know, I was saying something supportive, or commiserating with her, and the next thing I know, she's lashing out at me not to pull my New York shit there. To this day, I do not know what the heck she was talking about; I really don't. I just know I was annoyed enough that I felt like slugging her, because I'm sitting there, thinking to myself, I'm sitting in a room, waiting for people to come by if they want to. If she felt I did something that I shouldn't have done, talk to me then. She said something like, "Well, I talked to other people, and they agree with me." I said, "Enough." I just walked away. I was talking to Marcie Goldstein later, and she sort of didn't want to be embroiled in it at all. I met somebody else from DIA later on, and I said, "Do you know what the heck this is about?" The person said to me that Phyllis had talked to him, and he was surprised at what I had said in the room, but that was all that he had said. That's a very personal, unhappy recollection of that time there.
Then really, I wasn't involved with that. I know Phyllis was involved, and Judy, and whoever. I'm sure there's names of other people that I would know, but I don't recall them. There were lots of national kinds of issues. What those issues were, I can only guess. Phyllis organized the transportation demonstration well after that, because I was back in school. It was like '78, towards the end of the summer. She did that whole organization of that--I'm not saying all by herself, but she was the prime person, and I believe that had the support of ACCD.
Jacobson
Now Eunice Fiorito was president of ACCD. Was she doing that and the mayor's office?
McQuade
I don't think so. I could be wrong. I kind of think--and Larry [Allison] would probably be able to tell you this--Eunice, I think, went to Washington and got a job somewhere in Washington when she was doing that. I don't think she was at the mayor's office anymore, but I can't be absolutely sure because I wasn't intimately involved with that. In fact, I remember seeing her one time in Washington at one of those meetings. By that
Jacobson
Larry Allison?
McQuade
Larry Allison, sorry. When Eunice became the director of that office, they were really trying to be more activist. After participating in the gasoline demonstrations, they were basically told, "No more. You cannot lead demonstrations." Because they were very active in that. People had to learn some of the restrictions of when you're in government. There are certain restrictions on the kinds of things as a government person you could participate in. But they were active in that. Eunice, I think, was a good leader in that office. Later years--people will probably have different opinions on this--but in later years, some of the people--it was like a reward for your work in the Democratic Party, because we're a pretty democratic city, party-wise.
I guess my sense of the office, and this could be wrong, you're seeing it from the outside, I don't know that the impact was that great. I think Carol Roberson, I don't know if you'll be interviewing her, she's a friend of Judy's. Way back when, I think she came to a few meetings at Judy's house, but she wasn't very involved at that point, but she was a very strong director of that office. Ann Emerman was a strong director. Things were happening, and there were some years where you didn't really feel a strong impact. That doesn't mean nothing was happening, but they may have been working on more internal things. Parking permits were an issue, like expanding who could be covered. I'm sure they were supportive of that. There may have been more things done in terms of employing persons with disabilities within the government. But in terms of big broad issues, I don't have a very strong recollection. I know we worked with the office, okay, but I'm not remembering--because definitely there were things that we worked on with the office. But I don't have a-- [Interviewee Note: Carol Roberson and Ann Emerman were directors of MDPD in the late eighties and involvement with their office was as executive director of BCID.]
Jacobson
Who do you mean by "we"?
McQuade
When I say, "we," DIA. When I'm saying "we" in this instance, it would be DIA, there would be legislation or something. If the city human right's law, first it was passed some time in the seventies. Whether that was during Eunice Fiorito's time, or it was one of the later directors--I'm not remembering the names of all the directors. I know later on Julie Shaw became a director. There was an Anthony Santiago. I can't remember if he was before or after.
Jacobson
When you say human rights laws were they particularly focused on people with disabilities?
McQuade
Say that one more time. Say the beginning part.
Jacobson
When you talk about human rights, would it primarily--
McQuade
Disabilities. People with disabilities. The first law that passed that protected people with disabilities, protected people with physical disabilities. I'm sure blindness was included.
In what aspect?
McQuade
It would be illegal to discriminate against somebody in employment, in housing, places of public accommodation. A civil rights law. Then they added on--
Jacobson
Was that before--?
McQuade
Before the ADA, yes. What I don't know--whether 504 was '73 when the law passed, so whether it was after that or before that, I'm not sure. It might have been after. I know that when the ADA passed, Carol Roberson was--I believe she was still in office, and the city human rights law was amended to be closer to the ADA [Americans with Disabilities Act], or to incorporate some of the ADA. One of the differences when it comes to employment is in New York City, if you have four or more employees, you are covered by this for employment discrimination, whereas the federal law is fifteen employees, it goes down to fifteen. It started with ADA at twenty-five and dropped down to fifteen. Fifteen is the more the norm in federal laws. The human rights law, I don't know the exact date. I can't remember the Flynn, Bloom, Koppell bill that I mentioned to you, which was the state law. I have a feeling that passed first, because I know we worked on that, and then later on the seventies maybe the city human rights law, but I can't recall the date on that one. Larry might remember the dates on some of this, and it would be in the city code and all of that.
The formation of an independent living center in New York, the impact of Willowbrook
JacobsonI want to move along to the independent living center. How did that come about?
McQuade
In our state it came about I believe through the efforts of Fred Francis. Fred was from SOFEDUP. He worked with DIA, a good friend of Pat Figueroa's. They really are responsible for a lot of the access, if not all of the access, that came about in the city university system because they organized disabled students there.
Jacobson
Is--?
McQuade
Fred lives upstate. Fred is retired, I believe from OVR/VESID. He became a rehab counselor, and he went into the state vocational agency, and he moved up into administration. There was also a fellow, O'Connor was his last name, and I'm blanking on his first name [Greg], but Denise Figueroa or Pat would remember him. They really worked to get the federal money into our state--I believe it's the part B centers--and to get some state--it was a pilot project, let me put it that way. They used some state money, and I think they also went for some of the part B money. I think it was around then. From the federal government. The independent living money from the voc rehab act for independent living. Some of the centers only had state money, no federal money, and some centers had both. What they did was, they went around to organizations, grass root organizations around the state to encourage people to apply to become a center. It was different than in California where you had these activists pushing this.
The disability activists, we weren't working to have this happen; I found out about this happening. We knew about Berkeley CIL [Center for Independent Living] and all of that. But in terms of our state, I don't know that there was this big grass roots movement here pushing for--Fred knew about it, he went, and they got different organizations in various locales in the state. I think originally there were nine centers. CIDNY [Center for Independent Living of the Disabled of New York] had the home attendant referral program, that was really what CIDNY was doing, and it was Pat Figueroa and the late Annemarie Tully--they were working on that. I don't know that Pat had any other staff.
Jacobson
What about Bobbi?
McQuade
Bobbi came on later, though. I don't mean it was a huge amount later. I think Bobbi came on when he got the independent living money.
At any rate, what you had was these different organizations who were approached to see did they want to become an independent living center. The program I worked for was Independent Living for the Handicapped. It grew out of the Muscular Dystrophy Recreation League. These were parents of children, very young children in most cases, who had muscular dystrophy, who broke basically with Jerry Lewis in that they wanted to raise money to do things for their children now. Research was great, they were not opposed to research. But they saw a need for things to be there for their kids at the moment. From that, as the adults grew up, there was more involvement of these disabled adults, and new people came in who weren't necessarily there from the very beginning.
Jacobson
I want to stop for a minute. You touched on before that the grassroots activists weren't--
McQuade
Remember, I'm just graduating from college with my master's. I'm involved with the disability students' organization and with the section 504 advisory group at NYU, but--
Jacobson
Okay. Now, my question is that CIL in California began in 1972. Were the disabled activists in New York aware that this was happening?
McQuade
Yes. In fact, some of these people came to New York. Judy had some of these people come over.
Jacobson
Did they talk about DIA?
McQuade
Anything that happened in DIA after I left, I really wouldn't have kept close tabs on. What I was dealing on that particular point was more related to access at the college or issues at the college. The big push was Califano signing the 504 regs. The issues that I really was aware of: Califano, getting him to sign the 504 regs. That was '77. The other big thing was that demonstration on transportation that Phyllis organized, I believe, for ACCD. Definitely, I knew 503; I knew 504. That was from when I was involved with DIA, I had copies of the regs on that. Basically that's what I recall. It doesn't mean there weren't more things going on, but those were the two things that I really recall there was a lot of activity around.
Ask your question, because maybe you're going in a different direction.
I was just wondering where people put their energy. It seems like in New York people focused on issues as compared with California in Berkeley, where the reason that CIL began was that the people organized on campus. Then when they graduated they realized that unless they got their act together they were asked to go back home or back to institutions. So, I'm just wondering what happened here.
McQuade
I think here there was the whole Willowbrook thing. The scandal with Willowbrook, what that did was, it created a whole protection and advocacy system. If you were in an institution, there were programs to get you out. There was work being done. That's something else, you just spurred a memory in my mind. When we were involved with DIA, the early years with Judy and everything, we met parents who had kids who had mental retardation or severe learning disabilities or autism or whatever, who needed respite care. That Wolf Wolfsenburger's conference--the Policy in Action conference--some of the issues that were in there had to do with respite care, support services in the communities so people didn't get institutionalized, and services out there for people coming out. But Willowbrook, that was a big issue in terms of people involved with developmental disabilities.
DIA's position always supported independence and people making their own decisions, and as much support services as they would need. Things aren't going on in a vacuum; there's a lot of different things. Where people put their energy kind of depended upon what meant the most to you or to your organization. Since DIA is a multi-disability organization, I don't think it focused necessarily just on one thing, but certainly on things with physical access, a lot at that time. That's some of the major things that were going on. Home care was certainly--attendant care was an issue. It became even a hotter issue when the city decided to contract out the service. Then there was a whole big thing about who would provide the service to--the "self-directing" was the term that was used--disabled. I think it's a misnomer, and I think I said that earlier on, because you could be self-directing but not have the time or the connections to do all the research, to do all the groundwork to get your attendant, and you might want to call an agency and have an attendant sent to you, but you're capable and will be directing that attendant. Or you could be totally self-directing in the sense that you want to advertise for the person, hire the person, train the person, do the whole thing. That caused a little bit of a division in the community, because Pat was doing the referral service, and many of these people used it, but now that the city was going to give contracts out, his agency was one of the places that was going to seek the contract. Now, the city had different requirements.
So what happened was there were two hundred people--Marilyn Saviola could detail this for you--who wanted to be doing what they were always doing and just wanted a financial conduit. They didn't want to keep the payroll records, they didn't want to run the agency. They would have a board. They wanted a fiscal conduit to give them the money to do it, and somebody would write the checks and keep the records and everything, but they would register their people with the agency and take responsibility for finding replacements and all the other things, and there would just be a list of people.
The point I did want to make on this is the growth of independent living in our state really came out of the efforts of Fred Francis, Greg O'Connor. Later on, there were
Jacobson
Attendant referral.
McQuade
It could be attendant referral. That didn't go that way in the city because of the whole effort on the part of the city to contract out the service. New York City, I have to say, is one of the few places even in our state where you could get twenty-hour care. There's been limits put on it. It's grown tremendously, and there's been tightening and limits put on it, but upstate a lot of people were going into, and I assume still have to go into institutions because they can't get the level of care that they need in the community.
Independent Living for the Handicapped, Brooklyn: the office, staff, funding, agenda
JacobsonDenise, let's get back to the Brooklyn CIL. What was it called?
McQuade
It was called Independent Living for the Handicapped. When that center got the grant, there was money to hire a director, a full-time staff person, I think a part-time secretary. You could get a van because you needed to transport people where they needed to go. I think there was money for a second person, but what I can't remember was that the first year's budget or the second year's budget. They had had this little space in Flatbush, just a very small office. Meetings used to be held there.
Jacobson
How big?
McQuade
This was not separate space. Our director's office was a desk over here, there was my desk, there was a desk for our board member, who was the late Edmeé Rodriguez. She was going to NYU for a master's in rehab, and she did a practicum with us, which is usually like a day a week, and then her internship, which is three days a week with us. We had a secretarial desk. I forget if we had a spare desk where our driver could sit if he wasn't driving. We eventually purchased the van. Money was slow-coming as I remember it, so we were really working on a shoestring. We had all these requirements, so many people to serve. We had to come up with everything, our forms. Since our director and myself were both rehab counselors--and Edmee was studying to be one--we basically knew how to do intakes, get information that you would need, and I wrote up the original forms for us based on what people would be coming to us for.
Jacobson
Who was the director?
McQuade
Sue Fonfa was the director. Her husband Allen had been a volunteer--nondisabled--but a volunteer with the Muscular Dystrophy Recreation League, which then became Independent Living for the Handicapped. As I said to you previously, they had really
Jacobson
Was that before the center or after?
McQuade
That was before the center. I think that's why Fred knew about the program, why he approached them to apply for the money, because they were doing some of the things that a center would do. The difference--When I was hired by Sue, Sue had actually come to DIA meetings, only I didn't remember her.
Jacobson
Who was she?
McQuade
Sue Fonfa was a rehab counselor, and her husband was a rehab counselor. They were involved in working with the deinstitutionalization of Willowbrook, like getting people who were coming out into a vocational program. That was the people that they worked with. They volunteered at Independent Living for the Handicapped.
Independent Living for the Handicapped raised money by running bingo. That's how they raised money to do whatever they were doing in terms of recreational programs, or helping out and everything. They had a board that had disabled people on it, but the disabled people generally were not able to be active in the bingo thing, because you had to run around with cards. I went there a couple of times when I was a staff member. It was not something that I found particularly pleasant.
Jacobson
Sue was not disabled?
McQuade
No. This is another thing. Many of the organizations that went for these contracts, they had disabled people. They were organizations with disabled individuals involved, and they may have had nondisabled people also, disabled and nondisabled. DIA had to be a majority of people who were disabled. I don't know if we had it in our bylaws or it was just by the sheer nature of the people who joined the organization. I think it had to be that the majority on the board had to be people with disabilities. But you could be nondisabled and involved, and there were nondisabled people. What Bobbi Linn told us--this was years later--this goes back to 1973--was that Sue and I shared a room in Washington, but I didn't know it. I guess it was Sue had come with Bobbi, and Bobbi and I, and I think it was Sue, that we all shared this room, except I didn't sleep in the room; I was sleeping in the park. We had this all night vigil. So, I must have met Sue. She did remember me from DIA meetings. This is one of those funny moments in your life when the third person tells you. Sue said, "I met Denise at a DIA meeting." She said, "No, you two shared a room." We're looking at Bobbi like, "You're nuts." Then
The issue of nondisabled directors, recruiting activists to be board members
McQuadeAt any rate, that was a funny thing. An issue that came up, and I think it's important to mention this. When we were all together, when all the contracts had been given out and all the groups had applied, they hired Judy Heumann. There was another woman that came from Berkeley to do a training for us, how to organize things, how to set things up. For many organizations, this was the first time they were to have a contract that handles substantial money and set things up, and to know how to do it and what you should do and all of that. What I know was shocking to Judy, she mentioned it at the meeting. I think the first time it was mentioned was this nondisabled person who was with Judy--the fact that there were so many nondisabled directors. When Susan hired me, she knew I was an activist, and she was hiring an activist. She wanted somebody like me to be the second person there. This became a very uncomfortable time for the nondisabled directors, and I think for some of the disabled program directors or assistant directors or whatever the other people were called. In some places it was just a nondisabled director who was there at this meeting. The board had to have people with disabilities; I think it was a majority of people with disabilities. For me too, I looked at the movement as being an integration movement. I wasn't working to have an elitist disabled group of people. My concept of what we had been fighting for was that we could all work together.
I remember saying to Judy, and Judy, I know, was totally pissed, but it was a conflict thing. This woman who was with Judy was basically saying to the nondisabled directors that they shouldn't be where they were, and she knew her place. She, to them, seemed like Uncle Tom, because she's a nondisabled person, and they were well aware why the nondisabled person was making this statement. Judy wasn't making it, this, "I'm one of you, and you shouldn't be doing this" sort of thing. The training was good, but this was a horrible kind of thing, because in point of fact, these were the directors and the organizations that chose them as the directors were organizations of disabled people. I was in the position of, if disabled people choose a nondisabled director, isn't that their choice?
We were at dinner one night, and Fred was saying--he probably won't remember this, because you'll remember the things that hit you rather than the person that says them--he was talking about how some disabled people just don't have enough confidence and since I was the second in command, I'm assuming he meant that for me. I didn't want to be director. I'm fresh out of school, right? I don't know how you felt when you first graduated, but I'd never dealt with a budget; I didn't want to deal with budgets. That's why I became a counselor. I didn't want to have to deal with money. [laughter] Not the only one, but one of the reasons, but I felt my skills laid in something else. At any rate, it was tough. I'm speaking very earnestly here, as the person with the disability, you don't know whether the movement has gone someplace else that you have no idea it went, and should you be in this role if the movement--. I tell you honestly, I thought
Jacobson
What year?
McQuade
This would have been '79. I graduated in '79. This would have been the fall of '79, or maybe it was '80, because I can't remember whether the training was in the spring. I got hired in '79, and I guess it was October, so this might have already been 1980, and the training was being put on.
Jacobson
Who hired the director?
McQuade
The organization. Now, granted, here are people--Susan and Allen had been volunteers at the organization.
Jacobson
What was the name?
McQuade
Independent Living for the Handicapped. Now, how that came about, whether the board interviewed her and hired her--. She had done some volunteer work, and the fact that her husband was a major volunteer there, I'm sure they felt comfortable with somebody they knew. Whether that decision--I know the board had a majority--I can't remember if the state required a majority of disabled, but I think they did. There were disabled people on it. Again, here's the difference: in many ways this organization--and it did very good work--but the disabled people on it were not totally directing it. From the way we ran DIA there was no doubt that people with disabilities were the force behind it, and they were making the choices. Looking at how it was--. We worked very hard, Sue and I, to get more activists on the board.
Jacobson
Were these people from the community?
McQuade
These were people who had connections. They were people with disabilities who had connections to the organization. How long, I don't know. They would get services. When I say "services" they might have been some of the people who were helped to set up in their apartment and everything. I would have to ask Allen all of this. They had been on the board a long time, and some of them had been there for a very long time. Some came on as adults later on. The board member who told me about the job, and who was our intern, was self-directing and was committed to that. What actually happened is we worked to get more people like--for a time, Marilyn [Saviola] was on our board if I remember it correctly. I forget if we got Angela on our board, I don't remember if she had come on our board.
Jacobson
Who?
McQuade
Angela Thompson. I have to ask Marilyn. But Marilyn, as I remember it, and I don't think I'm wrong on this--maybe I am wrong, I may be confusing it--but I thought for a time Marilyn was on our board. Some of this stuff I will ask my friends, and I'll try to remember who it was. What eventually happened was it became what it was supposed to be. Not only majority disabled in numbers, but in philosophy. You know what I mean? We brought people on who were activists in the community. I want to go back for a minute.
What happened was, different from Berkeley, again, a person who had a vision that there could be this whole community of centers throughout the state doing what Berkeley was doing, went to different groups that were disability activist groups. But it wasn't like they said, "Hey, we need a center," and went actively to the state and said, "We want money for these centers." It was really Fred, knowing about this, coming to established groups to see which group wanted to apply, and then to judge which were the best groups to give this to. Some groups--like there was the Poughkeepsie group, I think, that was fairly new, and it had a lot of connections to DIA, and they formed, and they got some money and all. Some groups made it and some groups didn't. It all did become what the vision was eventually.
But what's interesting is it wasn't a totally correct model of what CIL was or totally adherent to the CIL model. So you'll find around our state now--I'm away from it now--most times, you will a get disabled director. Now, there are some directors that have never left their centers. Sue left, and I became director. The board had to approve it, but Sue had certainly felt that I should--I wasn't sure that I wanted to become the director, but then I decided if somebody else comes in, and I have to work for somebody else, and their ways or their vision for the organization is very different from mine, I'm going to hate it, so I'll give it a try, and if I fail, I fail.
I'm saying, going back, it was almost like putting the cart before the horse in one way because it wasn't these grassroots organizations saying, "We want this," it was somebody coming to them and saying, "You could have this. This could be something that you could be doing. Do you want to do it?" That's what I mean [by] it's different. Then there's this whole controversy over how many nondisabled directors there were.
What I think also is that one of the problems for all of these groups, running a center, when you are dealing with a lot of money, you have to know what the hell you're doing. CIL sort of worked. I know CIL had different problems and all of that. I don't know the specifics, but no center comes away without problems. It's really important to have management skills. If you're bright and have a sense of how to organize and how to run things you can learn it, or you could take a course, or something. It's really important that you have fiscal integrity, because centers have gotten into trouble with unethical behavior, people stealing, all kinds of things. One of the problems is that, when you're established too, then there are more contracts, more responsibilities. When you're starting out a lot of times, you're learning as you go along.
Finding qualified staff
McQuadeI think the other thing that's--this is my take and I'm just going to say it, and it still is my belief--I think you do your damnedest and we held positions open longer than if we didn't have the philosophy of looking for a qualified disabled person, that I would have done--but if eventually you've done everything you humanly can do, either you have to think of the overall, do you let your organization go to hell in a handbasket for this principle, or do you say, "We've searched--?" I'm not talking about the perfect candidate; I'm talking about that you have not found a candidate that you feel can take on the job, then I think it's okay to hire somebody nondisabled. You have to have your
Sometimes the person who is nondisabled is more of a firebrand. They feel this need to be more of a firebrand than the person who's disabled. For me that's kind of where I've always come down. I think you have to make a really good and honest search, and you have to really try to find a way to make it work. Certain things you can hire somebody else to do if there's certain skills that are missing. I can't speak how the movement is nationally. I also think that--and I said this to Judy way back when we were first starting out in independent living, the movement, the center and everything--what becomes a problem is, not everybody is an activist; not everybody wants to be an activist. What ends up happening is, the downside of our success, as people have more opportunities and get the skills that they need and can get jobs elsewhere, they don't need this; they don't necessarily want it. They just want to go out and be a painter or go out and be a computer expert. While they'll fight for their rights if they need to do it, they don't want to spend their life in professional "disabilityism." That becomes a real problem, because then your salaries are always so low in comparison to other human service agencies who also don't have high salaries. You need to attract a really high caliber person, and the centers did this.
As long as you have enough people with very good skills, you can train somebody who needs to work their way up; you can do that. But if everybody is poorly skilled, you're just going to have your programs fall to pieces. I think in some areas they'll make it, but I really see that there is a major problem facing these organizations. If we don't find a way--we're not near the point where you can say, "We don't need centers anymore," because you need the advocacy and you need places for people to go and see other people with disabilities--I don't want to overstate the role model, but seeing them doing, they can share their experiences. Women talk to women, right? I've learned from other disabled people. I still learn. We talk to each other, and you say, "I'm having trouble with this," "Well, I tried this, or this got through." There's a wealth of information, just life kind of information. But it concerns me a lot that if we can't pay decent salaries, we're not going to attract people to this. They may go into regular human--
The challenges of getting the center started, the population served and services provided
JacobsonI think that's a very good point. What did you do at the center?
McQuade
This I remember. Starting out, I was the sole staff person. I did housing advisement, benefits advisement; I did presentations; I kept case notes; I did advocacy. I went out into the community. Susan ran the fiscal stuff, and she did community stuff too. She did some work with the--what do you call them?--we didn't call them constituents. What the hell did we call them?
Jacobson
Consumers.
Consumers, yes. I should never forget that word. Some places are using "constituents" now. At any rate, she did some of that. She had to do the fiscal, get the reports in. I would get the reports that I would be responsible for, like how many people we saw, what were the issues. The first year we were developing the forms and everything. We were interviewing people together. We had a part-time staff person. We just had disasters. We had to fire our first person. I'm telling you, we both went out for a drink. We went to an Italian restaurant. We both had a glass of wine, and we both looked at each other and said if we had to do this again we were going to be alcoholics, because we were so upset. We knew we had to fire this person, but we had never fired anybody. We would be the people getting fired rather than firing somebody! [laughter]
It was awful, but it was exciting, too. We'd go out. You'd hear about a new building going up, either Section 8, or it was going to be accessible, and you'd go out and look at it. We started meeting with other agencies. Say, for example they weren't complying with what was then 504. The first year we were getting in touch with people. A lot of people thought, especially from the name, we were residents. We had a hospital call and say to us, "We have this person. He's disabled. We're discharging him. Where are you located?" I said, "No, no, no, wait a minute. Let me explain this to you. We are not a residence. What we do is we tell people how to apply for Section 8." There was 202 housing, elderly handicapped housing. We believed, you make the choice. you might choose to be in segregated housing, that's your choice, as long as you know your options.
Jacobson
What was your population?
McQuade
Okay. With Brooklyn it would be mostly people either on or eligible for SSI, some SSI Social Security Disability, some welfare. The population was every disability: ambulatory, disabled, persons who use wheelchairs, persons with cerebral palsy, spinal cord injury, psychiatric; that wasn't a huge part, but it was definitely part.
The people who were members of the organization, they were also your consumers. We would get issues like they would want a ramp into their building or something, and you would have to see what does the law say on this. Largely also, transportation. We were big into transportation. Mobility through Access, that coalition was there. DIA had the lawsuit, EPVA. We were very active in that. We went to those meetings religiously. Some of our board members were on the 504 committee, so they would report on that. We worked on other things.
We would be helping people to get their social security disability or their SSI. We would advise people like--I'm blanking on the letters, but it's basically a self-support plan, so we would explain about self-support plans. We would explain to people who were in sheltered employment how working affected their benefits, how much they could earn. We would get people referred. If they needed vocational stuff, we would get them referred to OVR/VESID If they needed legal services, South Brooklyn legal services worked along with us. Say for instance they were going for a housing interview with HPD, Housing Preservation and Development, or the city housing, and they were deaf. We would work with them to get an interpreter for them or make them aware that the city agent have to provide an interpreter.
Working with the Center for Independence of the Disabled of New York [CIDNY], the self-help model, moving the office to a safer location
McQuadeLater on--Marilyn I think was now director of CIDNY--but we worked together with the center. There were first two centers, CIDNY and us. We met with CIDNY, and we talked about how we were dividing up the city, because CIDNY was located in Manhattan. We were located in Brooklyn, but we were it. We did Brooklyn and Queens, and they did Manhattan and the Bronx. I forget if we both handled Staten Island or they handled Manhattan and the Bronx, and we handled Staten Island, but we divided it up. Susan and I met with Pat and Annemarie Tully and we basically divided up the city so we wouldn't have conflicts.
You were telling me about--
McQuade
What we would do, CIDNY and us, we would give presentations to rehab facilities, local OVR offices. It wasn't called VESID then, it was OVR; that was later when they changed the name to VESID. We would make them aware of what we were doing and what we could do, and also how we worked, because we were working very differently from most social service agencies. It was a self-help model. So, if you came in and wanted to apply for Social Security we didn't fill out the form for you necessarily. We talked with you about what Social Security requires, what you needed to do, made sure you understood it, made sure you could do it on your own, or if you couldn't do it on your own, we reviewed the application or we would assist you with the things you couldn't do. But, the whole philosophy was simply not to do it for you, but for you to understand how it works and how to do things. If you called and you were having trouble, and you couldn't get any satisfaction, then we would call the agency you were dealing with, and talk about the problem and try to resolve it for you. That was a new thing to people.
A lot of times, people who came to us would say, "Well, what do I need you for?" You need us to explain to you what you need to know to live independently in the community. Some of the stuff that we did was peer, for me, pure peer counseling. You would be talking to a person and he/she would be defining for themself what they wanted to do in terms of independent life. Sometimes it would be just dealing with their fears and concerns. Sometimes it would be getting them to be aware, "It's going to take a long time for this apartment to come through. There's a lot of things that you have to work on in-between." Getting people to follow up. Defining roles and responsibility. Most people who came to us were very used to coming to have their problems handled.
The social worker took care of it, or they didn't know what their benefits were, or they didn't know--really, really didn't know. They didn't have bank accounts. They wouldn't know necessarily all the things that went into being on your own. We ran groups sometimes--at our center, when I was there, even when I was leaving, the groups never--they worked a little for a little while. Then they wouldn't work. We always had trouble getting the groups to really keep functioning. But when I left, other people, they had other groups, and the groups seemed to take hold and everything.
We would have presentations, or we might invite somebody to speak. A lot of it was on very practical things, knowing benefits, or understanding Medicaid. Most people on Medicaid--"How do you handle this problem?" "What do you do with this?" We also--this is later on, as we grew--we hired an information person. My job became other people's jobs. Of course, they could take on more. I think when I left, we were doing anywhere between 1,200 to 1,600 people per year. Along with that we would give--when ADA passed--we went to the trainings that DREDF [Disability Rights Education and Defense Fund] did with the Department of Justice and all of that, and other staff went after me. Part of your obligation was to do ADA presentations, so we did that. I worked with EPVA, because Terry had gone for the training. And Harilyn--one year, Harilyn and I and Terry, we had all been at the same--. [interviewee note: DREDF trainings on the ADA and we committed to train others in our community.]
Jacobson
Terry?
McQuade
Terry Moakley, he's from Eastern Paralyzed Veterans Association. So we worked together to do ADA training in all the boroughs. It was a good experience. I want to backtrack for a minute.
The other stuff that we were doing is we didn't have a budget for interpreters so we worked out these barter agreements. Catholic Charities at that point had interpreters; they had a deafness program. They needed housing counseling. So we took their clients--on certain days, it was "Deaf Day," or "Housing Day;" it wasn't just housing--we took their clients who needed housing advisement and assistance, and we provided that, and they provided interpreters. We got a certain amount of interpreting for our clients, our consumers who were deaf. So, we worked out unique things like that. We also did something with South Brooklyn Legal Services, where they could refer certain people to us for housing and services they didn't provide and if there were certain things that we needed, they would do it for us. You know, you did creative things to try and cover what you didn't have. Or you just put in for it. We need this; this is a service we need to be able to provide.
Jacobson
How ethnically diverse was the population?
McQuade
How diverse? Ethnically?
Jacobson
Yes.
McQuade
I would say our population was a majority black and Hispanic.
Jacobson
Okay.
McQuade
Everybody. We had everybody, but that would be largely that. What we did also, we went from being lily-white--it wasn't a plan; it was just Sue Fonfa was Jewish and white, and I'm Irish and Catholic. I was disabled. Edmeé Rodriguez was Hispanic, Puerto Rican, she was our Spanish-speaking counselor. Our drivers generally were African-American. So what we did, we made it a concerted effort to start getting more staff who were ethnically diverse. We didn't have a large Asian population. Every once in a while we had some Haitians, but what we would do is, we also got a contract to run a home-care program, the city's home-care program like CIDNY did. And Allen was
We were moving [our first move was in '80 I believe, from Winthrop Street to Jay Street], and it was so funny when I think of some of this stuff. We moved our office. We were in this really awful place. Someone got murdered on the corner. It was like a bunker. Someone got murdered on the corner, and we made a concerted effort to move our center. It was too tiny. It was really very, very tiny. You would be talking to someone, and mice would be running back and forth.
Jacobson
Mice?
McQuade
We had mice; we had roaches. It was a great place. We would come in in the morning. We had this secretary that if she saw a mouse became hysterical, so one of the driver's jobs was to get to the office before she got in to remove the corpses of the dead mice, because we had traps. We had that gluey stuff. So it was quite a place. Sometimes you'd be siting there and your eyes would roll back and forth with the person you were talking to you because you would hear [makes a scampering noise with fingers]--scamper, scamper, scamper.
At any rate, we moved to Jay Street. One, we wanted to be more centrally located. That's downtown Brooklyn. For those who would get there on mass transit, it was an easier place to get to, and we had the van to transport other people in. We were near Borough Hall. We were near the colleges. We thought that it would be easier to go out and give presentations and recruit. We also had to go into Manhattan for meetings, so we could get to Manhattan easier.
Definition of and issues in home care, concepts for independent living
JacobsonCould you talk a little bit about home care?
McQuade
Because it was connected to an independent living center, there had to be a lot of choice. We did a--it wasn't a video; it was stills. We did slides of a sensitivity kind of slide presentation with board members and staff showing accessible doorways, talking about how people function, different types of disabilities, that the person is a person. Emphasizing all these things. Basically this. The contract restricted you to certain things. If people wanted to refer somebody to us, they had to go through a course. That was required by the contract. It wasn't like concepts for independent living. That was separated from the rest of us.
Jacobson
Let's define home care, because different people call it different things.
McQuade
Right. Home care in New York City is provided by, not a home health aide, but a home attendant, personal care attendant. These are the individuals who can wash you, go
Jacobson
How about a bowel program?
McQuade
No. As far as I remember, I'm thinking that they can--I'm trying to think if they're allowed to give you suppositories. I'm not sure that they're allowed to irrigate your catheter. I shouldn't say "catheter." Irrigate your bladder. I'm not sure on that. But the way that's worked out is the visiting nurse--I don't think that's done every single day. I don't think they're allowed to do that kind of stuff. So either you would have to have a family member who does it, or the visiting nurse has to come and do that.
Home care, in this state, follows very much a medical model. That's not something that we support, in the sense that, we basically--for CIDNY, for all the centers that took home care programs, really CIDNY and our center wanted to divide the disabled community between the two centers, but the group--this is not said as a criticism, it's just the way things worked--the group that Marilyn, Concepts for Independent Living, Marilyn Saviola and a variety of people who wanted to be more self-directing but didn't want to deal with the fiscal stuff, they advocated--there were about two hundred people on their caseload--they advocated to have this kind of center, this kind of set-up. But what they had their attendants do could be beyond what the state allows because they are hiring the person; they are training the person; they are making all those decisions.
Jacobson
"The group?"
McQuade
When I say "the group," it's Concepts for Independent Living, the home care agency for people who want to and are able to recruit their own attendants, train them, supervise them, and get their replacements.
Jacobson
I thought it was Independent Care Systems.
McQuade
No, Marilyn works for a different [group]. Marilyn's home care used to come through Concepts for Independent Living. It gets the city money for home care, but it handles the fiscal operation. It does the checks, keeps the time cards. The person who gets their home care paid for through that agency has to sign the time sheets and all, but all the fiscal stuff is managed by the program. They have a board of directors of people who used to service severely disabled individuals.
Jacobson
And that's--?
Marilyn, the agency she works for--this is very funny--provides a variety of services as far as I know. They may provide home care, and maybe today she gets her care through that. But before she went to work there--
Jacobson
Wasn't was she working at CIDNY?
McQuade
CIDNY. She got her home care through Concepts for Independent Living.
Jacobson
Okay.
McQuade
Pat [Figueroa] was the director when the contract came out. That agency also had its own home care program, as our agency did. But that was following the Medicaid and the state health code rules and regulations. I didn't run the home care program, and I've been away from this. I know what it did and what it could do and couldn't do. But some of this, I'm not remembering every single thing, because I've been away from it for a long time.
Jacobson
Okay.
McQuade
But basically, this is what I wanted to say. To not totally compromise our principles, what we did was, we made sure that the people who were working for us received sensitivity training, were made aware that the peope that they work with, they are the people to make decisions for themselves. That's if they were mentally competent. If they were not, they might be supervised by a daughter. Largely your caseload was senior citizens. That's largely who's in the programs, and then you'll have some younger people. But we wanted to be sure--
Jacobson
In the home care--
McQuade
The home care part of the programs, most of the people who get the home care are senior citizens. Not all, but most. Then you have some younger, disabled people as we did. But we worked to make sure that they understood that if the person was capable of directing them that they followed--aside from something that they strictly are not allowed to do. For example, the person wants to go out to a bar and drink, you go with them. Now, if they come home drunk, and they're vomiting all over the place and you have to clean this up, you might have to have a talk to them saying, "It's your right to do this, but I don't want to work for you." Then you might have to spend time talking to the person explaining, if you keep doing this, eventually, we're not going to be able to find an attendant who will stay with you. There's a reality. People are not prisoners in the job. I mean, we had some people that pulled guns on attendants, and believe me, that attendant was not going back to work with them.
What we would work with, if we were talking with people who were having problems with an attendant, and it might be an attendant from our program, it might not be, because some people who are members, they got their home care through Concepts [for Independent Living], not through us. We would talk about the uniqueness of the relationship, the balances; it's a give and take thing. If you do things that the attendant is not going to want to deal with all the time, you may lose that attendant. That's your choice. We're obligated to find you another attendant. It's like we wanted the attendants to understand, you're not there to be the moral judge of the person you're assisting.
You're there to assist them, but for both sides, you're both human beings, and an attendant may choose not to go back to a particular case. Just as you can have someody who starts to need more care than that particular attendant--say a big man, doesn't want to use a Hoyer lift, that attendant might not be able to remain. We might have to get somebody who's stronger. If the attendant says to you, "I can't lift somebody, and there's no Hoyer, and they won't get a Hoyer," that's not the attendant to send to that particular person.
Jacobson
Now, did that consumer have the right to say they don't want this?
McQuade
Absolutely, absolutely. That was something that we had to be sure that that was there, because otherwise you couldn't take the program. Now, if no attendant is acceptable, there could be a point where we don't have somebody for you. We did pretty well, because where our old program was located was the mecca for attendants. CIDNY had a tougher time filling their caseload because where their caseload was, there weren't a huge number of people who wanted to do that work, so that was sometimes--. Their agency is in Manhattan, but as far as I remember they accepted clients from all over the city. We accepted clients within a catchment area. We would try to help them. People tried to help each other out if they could.
Jacobson
What I wonder is where did you find home care attendants?
McQuade
They advertised, word of mouth. Largely, in our home care program, you had--the city expanded our caseload. If you were doing a really good job, they would ask you to take on more cases. CIDNY got their caseload expanded. I think our caseload was larger. We had Russian-speaking people who were getting attendant care, so we had Russian case workers. We had people from the islands, Jamaicans, Haitians. Largely your home care workers will be people from the islands. In Brooklyn. Brooklyn and Queens are two of the most diverse places in the United States, ethnically diverse. So, you would have some Hispanics. We had Russians. We had a lot of people from various islands. You name it--Jamaica, Grenada, all over the place.
Jacobson
Did they get benefits?
McQuade
Yes, yes, they got benefits. Allen and other directors of the city home care agencies formed an association, so they would advocate for more money, if they felt they need it, or benefits and things. They had a health care program; they got vacation, paid into Social Security and all of that.
Personnel probelms, potential fraud, screening and training home care attendants
McQuadeJust to digress for one second, it's a tough business. You really have to watch out for people pulling things, for people doing dishonest things. You had people, sometimes, where they would tell the attendants if they gave them money--especially when you have different languages going, and you don't speak that language. Sometimes it's like, say the Jamaican case worker, his word of mouth goes out to a community, "Oh, they have jobs here." Maybe the worker says, "You pay me this much, and I'll see that you
You have the director, like Allen was, and then you have the director of nursing. So you have the case where the person is approved for so many hours, you get the M-11-Q and then you have to see if you agree with the hours, or do you think this person needs more? Because sometimes when you go out there and what the form says and what you're seeing, there may be a need for more hours or more services than what we can do. You had to fill a case, I think, within--I'm pretty sure it was--seventy-two hours of getting it. It's one of those businesses where--and there's been different places where the fiscal director absconded with a lot of funds. There's been cases where people--Allen and the nurse [Ledora Walker] who was in charge when I was there and then she died and another nurse took over, they were very, very observant, very careful. It's not to say even being as careful as you should be something couldn't go wrong, but you'd have to watch.
If you got a complaint, only certain people are getting jobs. All these people register with you, but only certain people are getting jobs, you have to investigate that. Make sure that nobody's getting paid under the table, and this group of people are working and this group of people don't get jobs. There's a lot of room for fraud in these things; there really is.
Jacobson
How would they screen?
McQuade
They eventually got a--I forget if it was a fingerprinting program--but eventually what they did was, there's a way to check if there's a criminal record or something. I'll ask Allen. Anything that you would actually need later on, you'll tell me, and I'll get more information. They set up a bank of information where if somebody had done something terrible or something, you would try to weed them out. Then, the normal process, the person would be interviewed. There's a training program that they had to go through. They have to have a basic understanding of English, because the forms have to be filled out. Unless you're dealing with a Russian caseload or somebody Spanish-speaking, people mostly will be speaking English. They did scenarios, how would you handle this, how would you handle that? There wasn't just training on proper lifting, what you can do, what you can't do, all of that. It was a very thorough training. In the sense of, as I said, the sensitivity training, and all of that, which they emphasized. I have to say, the home care program it was very well run, and we didn't have--you always get a complaint, but we usually were able to resolve it. Knock wood, we didn't have any kind of big scandal or something.
Secretary of the Board of the National Council on Independent Living [NCIL], working to pass a new state building code, External Vice President of NCIL, overseeing the legislative committee
JacobsonOkay. Are you ready to move on?
From what I'm doing now? Or move on in your questions?
Jacobson
In the questions.
McQuade
Sure.
Jacobson
If you think of anything, you could throw it in at the end. Can you talk about what you're doing now?
McQuade
Sure. First of all, when ADA passed, I was on the NCIL board, as I told you. I was first the secretary of the NCIL board.
Jacobson
What does NCIL stand for?
McQuade
National Council on Independent Living. What we did was, for our center either a board member would come with me, and maybe another staff person sometimes, we went to the NCIL meetings. We went to our state association meetings. We would have a legislative day. A lot of our efforts, it's either for particular pieces of legislation like polling access, or having accessible mass transit statewide, the requirements that, you know, we had in the city. Issues like that. Or building codes. We worked on changing the city.
The state building code was changed in '84, and it was a very good building code. It required adaptability rather than that two percent of the apartments are accessible. Then we worked on--the lead was taken by Ann Emerman, who was with DIA, and Terry Moakley, from Eastern Paralyzed Veterans Association. But in 1987, we passed a new building code. All of us did the support work. The centers, we were all working together for the same thing. Then, our building code was in compliance with the state building code. New York City has its own building code, and that meant that universal design would be used in apartments and all.
So, I worked as a secretary for NCIL. The external vice president resigned, I think it was. We had two vice presidents, external and internal. One of them oversaw the legislative committee.
Jacobson
That was?
McQuade
That was--
Jacobson
External?
McQuade
I believe that was external. When this person resigned, I was asked to become the external vice president, I think. I think that's what happened. So I oversaw the legislative committee. One of the major functions of that committee during the time I was on NCIL was to pass the ADA. NCIL also worked on the Air Carrier Access Act, the Fair Housing Act, and our center being a member of NCIL supported all this and worked on it locally.
We would get legislative alerts and you would follow through on what the legislative alerts were. For ADA--Fair Housing, and also Air Carrier Access Act, you would be responsible--like, once I was overseeing the legislation. I would have to see that the alerts got out all over the country, and see that the alerts got out in our state.
Executive Director of Brooklyn Center for Independence of the Disabled, Inc., 1984-1992, the challenge of Expo '91 and learning to delegate responsibilities, the drawbacks of having numerous centers in New York and the need for one corporate structure, pros and cons of working "inside" the system
McQuadeNow, when ADA was being worked on there was a state coalition through the Independent Living. I think it was called AILCNY, Association of Independent Living Centers in New York. There are two associations now. There was a conflict, and now there are two state associations. At any rate, I worked on this. I loved advocacy work. I did the administrative work of our center. After awhile, when ADA was passed, I started to really burn out from being the executive director.
Jacobson
You became--
McQuade
Right. I'll go back a little bit. First, I was the only staff person, so I was a program coordinator. Then I became a program director or manager--one of those titles--as I had staff to supervise, rather than it being all my job. Then I was the program director after a while. Then we had more staff. We had a housing counselor; we had a benefits counselor; we had a clients assistance program. At any rate, when our director left, I think I became director in '84--when she left, to have her baby, she talked to me about becoming the director.
I wasn't sure at first, and then as I was explaining to you, I just felt--. When I worked there, Susan handled the fiscal stuff, and I did the program stuff. It's not that we didn't--and Susan wrote the grants, and I would supply certain parts of the grants, but I was really afraid of the fiscal stuff. So, what we decided was that we were going to get a part-time, either a part-time or we were getting a bookkeeper type of person. What I did was, I decided, "I'm going to try it," for the very reason I said to you. I had my idea of where I wanted things to go, and I would hate to be under somebody who had a different idea, and be kicking myself saying, "I could have done this." So I felt it was time, give it a shot, it's scary, but give it a shot. If you can't do it, then they'll get somebody else, but at least you tried.
What Susan did to me was really for my first year as director, she mentored me in the fiscal stuff. I'd come over--now, we had somebody to do the payroll. That was biweekly. We had somebody doing that. What we found out, we always had audits done. It was required by the state, but we had it done anyway. [Interviewee Note: I think we did quarterly audits, but the state only required annual reports from an auditor.] What we found out was--this guy had said to me--he was a student, and when you're a student, you get exemptions as a student. So, what we found out when our auditor came in was that he was not a student. He was giving himself exemption, and we had underpaid FICA, because he had underpaid FICA, and we matched FICA. We had
You are just much more careful, or making very sure that you're legitimately doing something. At any rate, from '84--sort of like the summer of '84 to 1992, I was director. Our program continued, not in leaps in bounds, continued to grow. I was a lousy fundraiser. I wrote some grants, and one of our other staff members wrote grants. We got some monies here and there. I'm just not a great fundraiser. We tried, for a short period of time, we tried having one. We did a really nice job on the expo, because we really brought to the fore ADA.
Jacobson
What expo?
McQuade
It's in my resumé, the expo that I sent you, the year. I believe it was Expo '91. ADA passed in 1990, I believe it was Expo '91. We had a marketing person. We got a grant from the Brooklyn in Touch and from United Way. It ended up costing the board like $7,000 which we hadn't planned on, but they were so pleased. Everything else, it almost sounds like a pyramid thing, but money came in for this, you went the next step. Money came in for that, you went the next step.
It was a terrible year though, because the state was--our person who oversaw us and her boss were very nervous about us being able to carry this out, so they would always be calling me, and it would be like you were always under the gun worried that they were going to tell you, "Stop!" We did it at the Marriott. It came off really well. Ann Emerman got us Mayor Dinkins, and he came. He gave a speech. Justin Dart came in. He was a keynote speaker.
I forget the exact number, but we had eighteen or twenty exhibitors, and we did presentations on--the idea, what we hoped to have happen was, we would be seen as an agency for small businesses to come to for ADA advisement, and we would eventually have a fee-for-service. There was a plan; it wasn't just to do a one-time thing. We were going to do this, hoped to do this again. But this took so much out of me personally, and out of our staff, because we had to keep everything else going while all this was added onto us. I said to the board, "I can't do this again. I will be divorced if I take this kind of thing on again, and the staff is exhausted."
Part of it was my fault, because I feel I didn't devote enough of my time to--we hired a fundraising person who--she didn't stay long, and she wrote boiler plate stuff for us, but we got nothing. I'm not knocking her. The problem was that I was so involved in day-to-day administrative and personnel stuff and doing community stuff, that I wasn't giving enough time to really get across to the person the uniqueness of what we were doing.
At that time, you were married?
McQuade
Once the expo was over--I normally worked very long hours, but I wasn't doing like two o'clock in the morning. What happened was that I learned more about delegating from the woman who was my second-in-command. It was like I had two codirectors; one who handled the day to day program stuff, but I still had a lot of involvement in that, and one who handled the administrative, Gil Yildiz. She's the director for the Albuquerque center, and for a time, she was the assistant director in Queens. First, she became director in Brooklyn--and no one who knows Independent Living will be surprised at what I'm saying--she just found it too draining dealing with our board. Not all the boardmembers. Boards sometimes involve themselves too much in day to day stuff, and very rarely do--. If you talk to most of the directors, I think you would hear the same thing. Very rarely do they do the thing which you really want boards to do, which is do fundraising. They'll do policy, but they don't do fundraising. It's very hard to get the kind of people on your board--we can have fifty-one percent disabled, not everybody has to be disabled. But to get the kind of people that you need, who are committed to what you're trying to do, and have connections, it's just been desperate.
I've said this before, and I was saying this to the director at the Staten Island Center--she's on paratransit's advisory committee--I said, "The issue is, in New York City"--Gil came up with this concept, and she's right. I used to feel after awhile, we should be buying our supplies together to get better deals and all of that, but in reality, in New York City, you cannot have all these separate boards. Six centers in New York City. You've got Staten Island Center, Brooklyn Center, Queens Center, Manhattan Center, and a Harlem Center, and the Bronx Center. You've got six centers all vying for the same pot of money in New York City. It is a disaster.
You need centers in these areas, because it's a big city, but what you really need is one board, an executive director for all of these, and each center has a--not a program director, a borough director, or a center director, with an executive director for overall--. Now, they tried different things. They tried coalescing. But not having one board, coalescing on activities. Like they did the torch ceremony. It was wonderful, a wonderful day.
Jacobson
On the anniversary of--
McQuade
Yes, of the ADA. It was a wonderful event, wonderful. Whether they made money out of it, I don't know, and I would doubt it. But what I'm saying is that I do not see a future for our centers in New York City--I'm not talking about the state--if they don't come to terms with the fact that they need to be under one corporate structure, get a really terrific board. Then you get the cream of the crop of disabled people on your board, because it's not like, "Oh, I'm in Manhattan. I don't want to be on a board in Brooklyn." The board represents all of them, but I don't see that happening.
Jacobson
What that brings to mind, is what I remember Judy saying at the first DIA meeting, although it was about disabled activism. She always says that we better pull together, because if we don't everybody gets a small piece--
McQuade
Of the pie, yes.
--of the pie. When you band together you get more money and then you can keep--
McQuade
I think what you have is--I'm not knocking anyone, but I'm saying that I think what's gotten in the way is turfism. I think people--and these are people who are struggling. The Staten Island Center director said to me, we had a closed meeting of the advisory committee yesterday, and she was saying, "Do you miss being a director?" I said, "No." I said, "I miss the ability to take on issues and fight for them." You think this is an important issue; you go to your board; your board agrees with it; you can just go with it. You're not in a governmental structure where there are certains things that you as a governmental worker cannot do. You can say things internally, but some things that you can say internally cannot be said publicly, right? Whereas when you're a center director, you can say what you think. As long as your board supports the position, you basically can take a position and you can oppose people that you maybe--Not everything is in opposition, but you have more freedom of picking the issues and going with them in the way that you think they need to be dealt with. Whereas, when you're inside, there's advantages in one way--I'm going to go back before I end, like how I ended up working here.
The advantage is you really get to learn how things actually work, and all of the different forces that have an effect on things, because things don't happen in a vacuum. Internally, you can say things because you're not the outsider, but again, if what you're saying, there are other reasons for people to be opposed to it or not do what you want, that's it. So you need both; you need people inside, and you need people outside. What I don't have to deal with anymore is, I don't stay awake at night worrying about whom am I going to have to lay off? What am I going to have to cut out? Because they just got a cut. Not just that they didn't get a raise this year in Independent Living, they got cut. So that kind of stuff is always agonizing, and when you're a smaller group, you know the people pretty well. These are not some cogs in a wheel that you're firing. This is somebody that you may have been working with for years and years and years. Not that this doesn't happen in other places. It's easier to fire strangers.
The only thing that I was saying is, I don't miss the personnel stuff. It's draining to anybody in any entity, but it is especially draining in a center. The personnel stuff is difficult. And you always hate having to hire new, because it's always so hard to find somebody. That's really difficult. Then you've got more work than what everybody can handle, and yet you're responsible for meeting goals that you set up. I'm going to backtrack for a second.
Appointment to the transportation disabled committeee, developing paratransit service and making mass transit accessible, the issue of securement on the buses
McQuadeHow I came to work for New York City Transit, that's another experience in my life that if somebody said to me, "You will end up working for New York City Transit," I would have said, "You're insane. I will walk before I'll be working for New York City Transit."
Jacobson
I was very surprised when I found out.
Right. You were not any more surprised than I was. We spent so many years really in opposition to the transit authority and to the mayor a lot of the time, during Mayor Koch's time, over this whole issue of an accessible system. Before ADA, and before I left the center, when the lawsuit that EPVA brought, which was combined with DIA's lawsuit, won, under the state law, the state building code, there was an agreement worked out to create a small paratransit service, to make sixty-five percent of the buses accessible, purchase new vehicles and all of that, and to spend forty million on subway access. An advisory group was formed. It was called "The Transportation Disabled Committee." Myself, Terry Moakley, were asked to be members of the committee. The way that was structured, the state got to appoint certain people with the agreement of the mayor, and the mayor got to appoint certain people with the agreement of the state. Then there were ad hoc members like from the Department for the Aging, both state and city, the Department of Transportation, state and city. I forget who else.
When this committee was formed, and the director for Mayor's Office of People with Disabilities was on that committee, that was Carol Roberson, she was very good. There were a few people who would not have been my choice to be on the committee, but we basically had a very good working group. I don't know if you knew Julia Schecter. She died about a year ago or so ago, maybe two years now. She was with the state advocate's office. She was very good. She was ex officio. We had a really good group of people. We had to develop a paratransit service, a plan for a paratransit service, oversee the buses becoming accessible, oversee the subways, choose the subway stations out of a list.
Jim Weissman always says, "It was late at night and everybody threw in a station in their district." It wasn't necessarily that this is the best station to do. We worked on that; that plan was finished for the paratransit in 1990. The funding was basically out of a mortage filing tax, so there was very little money to go into paratransit. I think you had twelve million dollars for a year to service New York City. [laughter] It was very interesting, very fulfiling, very exciting times. I found it very fulfilling to work on that.
So, at any rate, and then work on ADA--
Jacobson
By the way, do you have any estimate as to how many disabled people there are in New York City?
McQuade
The old census, the one previous to this, the 1990, I think using their percentage, it went anywhere from sixteen million to seventeen million in the country. We had about one million in the city, and something like two million in the state. The new census, I don't know. I would doubt that that number went down because of the aging population. These may be individuals who don't identify themselves as disabled, but rather elderly, but in point of fact, I would say those numbers went up.
Jacobson
I was just curious. Go on.
McQuade
With systems advocacy issues, we [BCID] were very big on the transportation. We worked on national health, whatever the bill was at the time for national health. We were supportive of access to polling places in our city or state and all of that. Different people sometimes took the lead and then you followed. You did what was necessary; you went to hearings and all of that. We supported, as I said, the Fair Housing Act of
1988, I think it was. What was the other one? Fair Housing Act, Air Carrier Access Act, and all of that. My years on the NCIL board were very fulfulling, very challenging, because there was so much work; there really was. It was great to meet people from other parts of the country, kind of share what everybody was doing. Some places were more sucessful than others, obviously. June Isaacs Kailes?
Jacobson
June Isaacson Kailes.
McQuade
When she worked at the Los Angeles center she just had a fabulous ability to raise funds and everything. We met very good people. Gil got involved in NCIL also. Marca Bristo, I got to know Marca. There were a lot of different people.
Jacobson
Do you know Max?
McQuade
Yes, Max Starkloff.
I was in St. Louis to do a presentation on safe securement of wheelchairs and scooters on buses and paratransit with my immediate supervisor, and we had the pleasure of riding on the accessible train from the airport to the Union Station hotel. It was great. It was very inexpensive. I carried one bag. My supervisor, when we were going back, we had one more thing, and she carried it until I jumped on the train and got off. I have to say they were some of the friendliest people, the St. Louis residents. They were very friendly on the subways and everything.
We went to the St. Louis zoo. The access there is very good. The hills are a little--it's hilly--pushing yourself, there's spots where you need some help, but someplaces where you can just go along. On that little accessible train. If it gets past all of our editors. I do the newsletter for paratransit and ADA stuff, so we took some pictures of showing how I was secured and the train, and I got the names of the people, so we're going to try to get that article published in our next newsletter.
But what I was saying is that the buses, there, the disabled community wants to be secured. They weren't good at securing. I spent a lot of time on securement on the major buses and our fixed route buses and our paratransit. It's an issue all over the place. We had probably approximately thirty people in our workshop, which is a good number of people. We brought the videos that we did, we made with some of our customers, how to be secured on the fixed route bus, how to be secured on paratransit. We brought those and we were talking about that whole issue. And it is an issue. People, the drivers--in different places, the disabled community wants different things. The issue of being secured for me, you need to be secured.
I've been on the bus where somebody pulled out--this was just a year ago--and I sprained my foot, because my chair was secured, but you don't have to wear the seatbelt shoulder harness on the fixed route bus. You can choose to or not; that's in the ADA regs. I didn't have it on, and the bus driver had to jam on the brakes. My cushion slid, I slid, and what I did, my foot was down here, and it pushed my foot all the way up. I knew it was sprained. They offered to take me to the hospital, but what are they going to do?
Jacobson
What are they going to do?
It's sprained. I've had sprains before, there's nothing that a doctor can do except tell you what to do and you follow the instructions and eventually the sprain heals. Sitting around with ice bags on my ankle at work is what I did.
At any rate, it's important, because also we have new buses that are front loaders, and there's some difficulty with that for some people's chairs. We're having a new thing in our city. We wanted to come on the front of the bus when we were first advocating. The front loaders, they were Grumman, there was a problem with their design and they didn't work well. So, we have what we call "rear loaders." They're at the side door.
Receiving training in implementing the ADA and training others, a complaint from the state, experiencing burn-out
McQuadeWhat I was saying was I really wanted to work on ADA implementation. I had burnt out on doing the administrative stuff, and personally I wanted to focus on ADA implementation. It was hysterical.
Jacobson
Let's--
McQuade
--stop the tape. Okay.
As I was saying, I had been doing, as was required by our training that was provided by DREDF and the Department of Justice, and EEOC, there was training number one and training number two. I was at both of them.
Jacobson
EEOC?
McQuade
Right. Equal Employment Opportunities Commission, and Disability Rights and Education Defense Fund. They had gotten a grant, a contract, to provide ADA training. I think the first training, they covered everything, but it was like Title One and Transportation, and the second year--I think they covered everything, but the second year they went into greater depth on it, and the focus was probably on some of the changes as the regulations were coming out and everything. But it was part one and part two, and I had the opportunity to go to both of them. Your obligation for being trained was to train others. Trainers to train people back home. So, I worked with Terry Moakley and Harilyn Rousso to do ADA trainings. We each took a section or sections, and we did ADA trainings throughout the boroughs. I think we had a pretty good turnout.
The second year was like '92. This is where I'm blanking for a minute. I'm trying to remember if I worked with Harilyn and Terry both years, or if it was the first year I just did it with Terry, and then the second year it was with Harilyn and Terry. I'll have to ask Terry Moakley; it's really awful.
At any rate, I was doing that, and I was over at Eastern Paralyzed Veterans Associations. We were meeting on something--this is how life is--and I get this call, and it's from the state. Some judge from family court had complained to the state about our agency's, about our handling--of this case. I was just livid, because this judge, it was sort of like shifting the responsibility. We don't have housing. We tell you how to apply for things. This consumer who had been referred to the center, I guess by some social worker with the court or something, missed two appointments. There were a number of things. It wasn't really that we weren't doing what we were supposed to do. Here's what we do, here's what happened, and she's blaming us because everything hasn't been resolved for this person and she's calling the state.
So I said, "Look, I'm not at the office. When I get back"--I wrote a letter. You know how you draft letters? The first draft, it should have set the paper on fire. I was really furious. Then I had Michael Levy--he actually works with me now--we work together, he's the director of travel training. He's blind, and he had been our assistant director for the programs, the services part of it. Gil was handling the administrative part of it, the stuff that I wasn't doing. What I made sure, really, was that I wanted to be sure that there would be someone in the center that knew the fiscal stuff backwards and forwards, who would not have my nerve-wracking experience of having to learn it while I did it. So, Gil was the one that really wanted to do that, and she was the most knowledgeable on the computers and stuff. She had it all down pat. She knew how to do the reports. She knew how to look over the reports on our different grants, and how to do the budgets and all that stuff.
At any rate, I got this thing [phone call] and I said to Terry Moakley, "Terry, I have had it. If you know of any job, any job whatsoever, let me know, because I cannot do this any longer." He said, "You know, I think they're still looking for an ADA person at New York City Transit." The irony was the ADA compliance person--we were on the same side of the street as the Transit Authority, our old center, which I moved further out in Brooklyn to save jobs. We used to be on the same street. Before we moved, the year I left the center, I had moved it a few months before I left. When we were next to the Transit, he had come over one day and said, "We're looking for people with disabilities," and he gave us each the job description. Mike and I said, "Okay, we'll share this with our community," but I wasn't thinking then about leaving the center.
With moving the center, Gil and I had found other space. What we did was, with our home care program, we had to stay within their catchment area, but we moved out to--you don't know Brooklyn, so this won't matter to you--we moved out into their catchment area, found space that we could share with our home care program. We shared a conference room and we shared a lunch room, so we got bigger space for less money. We had been paying twenty-five dollars per square foot. We got it for thirteen dollars per square foot. I didn't have to--
Jacobson
Where?
McQuade
We went from downtown Brooklyn to Avenue P in the Midwood section of Brooklyn. Nice area. It had one elevator. We had been looking for two elevators, because every time our elevator went out, we ended up being carted down four flights of stairs by the Fire Department. Or, I was working outside the building because I couldn't get up, and they would be running up and down--those who were ambulatory or nondisabled would
We found space. You split it on your contract. The things that you're sharing, you split the cost. The way we did it is we loaded--we didn't have money to pay for the renovation, so what we worked out with the landlord--I think we had either a five- or a ten-year lease--we worked it out that he would share--the cost would be amortized, I guess is the word, over the ten years. So, each year the rent would go up a certain percentage. That's how we did it.
At any rate, I had just gone through this big move. There are things that happen, and you know you're burnt out. When we moved, it was such nice space in comparison to what we had. We're on one level. We only had one elevator, which did break down the first week we were there, but it was three steps to come up rather than four flights. It's easier to get help for that. At any rate, the first day we move in, someone's complaining about the paint is affecting them. Honestly to God, I had to close my door. I said to Gil, "I can't fucking believe these people!" It wasn't everyone. [laughter] I said, "We've saved their jobs, and everybody now has bigger space!" You know when you move what it's like. I was down measuring. Of course, we had a person design the space, and some things didn't fit when we got there. Who wants to measure? There were people who volunteered with me, and we spent until eleven o'clock at night, from eight thirty in the morning to eleven o'clock at night moving this, getting the phones set up, when things went wrong, "It'll go here instead of there." It was clean. It was nice. It was new, and I said, "I don't believe this! What, in God's name, can you do about the smell of new paint? It's paint, there's a paint smell." If this was a person who had a respiratory condition I would say, "All right, go home, or whatever," but this was just "The paint smell is annoying me," or the fluff from the rug. It was like I wanted to just beat my head against the wall until I became unconscious. It was things like that.
You know you're burning out, because people are people, and this kind of stuff will happen, and I was just finding myself getting so frustrated dealing with this. And saying, "This is my life?" At any rate, this one complaint that we got, the stuff that was happening, and I said to myself, "I'm burning out. I have to look for another job." Terry mentioned this job, and I'm saying, "Okay." The guy who ended up hiring me--
Jacobson
Where was Terry?
McQuade
Eastern Paralyzed Veterans Association is in Queens. It's at the Bulova Center. That's what this office is called. They moved from Park Avenue South to Queens.
Jacobson
Was that like a recreation--?
McQuade
They have a gym in there for the peole who work there, but it's an office building. They have parking around it. They lucked out with finding this space. I think there was a Bulova bowling team or something. I don't know. There was something.
Jacobson
I think that there was a sheltered woodshop or--?
Yes, I think there was. Because there was even a fine finger dexterity test when I was in rehab school, that was like a Bulova test. I couldn't do it. That's why I'm not a watchmaker.
Working for New York City Transit in the ADA Compliance Office, conflicts between the transit and the disability commmunity regarding issues of compliance
McQuadeSo, here I was, burning out, and feeling it's time to move on. Terry mentioned that job, and I said, "I think that's the job--this person came over from Transit to have us disseminate information on it when we were next to the Transit Authority." Sure enough, it was. I called up, I submitted my resumé, I got interviewed, and I got the job. Almost nine years later, here I am. I started working for the ADA compliance office. There were things that I knew, like about communication access. It's funny--that was the other funny thing, we were doing a presentation on ADA at the Bulova center, and I had just been hired, but I hadn't started yet, and my new bosses came to see the presentation. I was so nervous. It was like, "Oh my God, this is going to be so difficult." You haven't even started the job yet, what if you blow it now. It's been a trip. No one could have told me I would have worked for Transit.
The point I was making before in talking about the Transportation Disabled Committee from working on that committee with Transit people, we had really formed a good working relationship. That sort of continued on. With ADA we really tried to--one of the reasons I was hired, obviously, is I've been an activist. My boss, I think I told him that I had been in a sit-in at the MTA, and I had held up a bus. I think I told him that. I think on the interview, when we were talking, I didn't want him to be surprised, because there would be people at the Transit Authority who actually knew my history. It was very funny. So I got hired.
Somehow The [New York] Times was doing a story on disability rights back then and where it is now, so I got interviewed by The Times. The then president of the Transit Authority asked me to come up and see him. I certainly noted that I never expected to work for the Transit Authoriy, but over the years, we had developed a working--Terry, all these people that were major activists, EPVA had sued the Transit Authority--we had developed a working relationship. It was coming into a huge bureaucracy. You go from a center of twelve people to a 48,000-employee employer. It was a change in a lot of ways. But it was good. I got to do ADA complaince from almost square one. They had done the transitional plan before I got there, but I started working on a brochure to inform the employees of their rights as disabled employees, and make the nondisabled employees aware of ADA responsibilities.
It was interesting, because we were reaching out to the community. We started a newsletter. I also really had information to share with them, because they understood what needed to be done physically with the subway stations and all that, because they had engineering backgrounds and all that. We had an architect, several engineers in the ADA group. What I brought to the office was the employment responsibilities, the
It's been a very interesting time. I've enjoyed working there. I've also been frustrated working there, because sometimes things happened that we ended up in a conflict with the disabled community. One example--this people know, so I'm not speaking out of school--we had purchased buses, and we kept hearing from people in DIA really, that the buses were not compliant. So my boss brought a bus; we had a meeting. We used to have these quarterly meetings with the community, but we also had these internal ADA meetings to make sure everybody was doing what they were supposed to do in all the departments and all. So, they brought the bus; I tried the lift. This woman who was talking to me, it wasn't clear exactly what the problem was, because they have to be compliant. The company had said they were compliant. I think they were our TMC buses, or the Nova bus. At any rate, when I tried the lift, I said to my boss, "This is very steep." I said, "I think she's right. I'm coming down too fast, and it's hard going up."
So we were out in East New York, that's one of our depots. We've got lawyers. We've got engineers. We've got systems safety, and we're trying out--I'm like the crash test dummy--we're trying out the lifts and everything. Everybody's looking at it and all. They were right. We had to get that company to retrofit several hundred buses. One of the things that happened was we had been meeting with the disabled community. A lot of this was DIA people. We had met, and what we had worked out was we were going to have to retrofit the buses. We asked the community to basically have patience, because we needed a certain amount of time to do this, but what was happening was the retrofitting wasn't happening that fast. We're getting towards the winter.
We had also gotten a promise from the Department of Buses--we were ADA; I wasn't in Department of Buses then--that, if anybody had to wait more than thirty minutes for a bus--the buses come with certain headways between them--that they would adjust that, and then we're getting complaints as the weather is getting bad. People are waiting more than thirty minutes, and they're upset. We kept saying--myself and this other disabled person who worked there--some of this may have to wait for ten years to come out. The community needs to be told about what we're doing to correct this. Basically, they were writing letters to the disabled community from our group. We weren't asked to do the letters, I knew and this other disabled person knew, these letters would not satisfy anybody, because what they [the community] were asking for was time frames. The Transit people were feeling that they're trying to trap us into something that we couldn't commit to. What our people were really saying was, what the disabled people were really saying was, "We were told this, but this is what's happening. Now this much time has gone by. We want to know when this is going to be done."
We wrote memos to our people in our unit saying what we thought. These are not bad people, but they didn't take our advice. We're hearing that there's going to be a TV [laughter]--Arnold Diaz was going to take this up. Sure enough it ends up on TV. Unhappy people complaining about--. Really, that was the other thing; they [disabled advocates] wanted to do something nice about transit, because our boss, Walter Noonan, was a very nice and decent guy. He made the commitment in good faith, but the headways--it was getting colder and people are waiting longer. We said, "This is going to escalate." Buses were held up in Brooklyn. There was more TV coverage. Everything
So that kind of stuff is extremely frustrating, because we work for you. You hired us because of our expertise in this area, that we know people in the community, that people will tell us things that maybe they won't tell you. That was a frustrating moment. It all did get worked out. They were repairing it. Our office needed to light a fire under the Department of Buses, and once it was given a greater priority the repairs were made more quickly. But it took that.
Jacobson
When you talk about the disabled community, who does that consist of?
McQuade
It varies. A lot of times, it's DIA members. I mean, what's been kind of disappointing to me over the years, that the centers weren't as active as I felt they should have been in some of these issues. But then, a couple of years back, people from DIA, people from the Brooklyn Center, the Queens Center came aboard, I think, eventually, Bobbi's Center, I forget about the Manhattan Center. This is current, but I just have to see who came on. Basically what happened, there was some reports by the public advocate about some of the problems with Access-A-Ride. There was an advisory committee, paratransit disabled committee.
This again is my opinion; people might see this differently. I felt that the advisory--this is not everyone on the committee, but when you would raise issues, it's your job to make sure that the things that you're raising are followed up on. By that, I don't mean that you wait until the next committee meeting. You write a letter. You ask for time frames. Some of the information that people would ask for wasn't provided, but it's up to you. This is not a course in Advocacy 101. You are in the advanced course, as far as I'm concerned, for many of these people. I think what happened was--what did happen, that's an opinion that sometimes the community has not followed up the way it used to follow up or needed to follow up. The squeaky wheel does get the oil. There's so much going on and so many different issues, that things can get lost in the shuffle without people intending that to happen.
The accessibility of the buses, improvements implemented by New York City Transit
McQuadeThat's basically some of the difficulties, but what I have to say is that you'll never satisfy everybody on the service, because there's just too many things that can go wrong in it. Customers don't come down on time. Drivers don't go to the right spot. There are so many factors that can cause problems. You can make it better, but you'll never totally make it--because it's not your own private car service.
Jacobson
I would imagine that most of the buses, the public buses, are accessible.
McQuade
They're all accessible. All over. They're all accessible.
In every borough?
McQuade
Every borough.
Jacobson
Every?--
McQuade
Every single bus in our system is wheelchair accessible, two wheelchair positions. Every single bus.
Jacobson
How about the express buses?
McQuade
All accessible. You may not recognize it, because it's not like a door, it has to open up. This is where we are. They've been putting the express--my express bus has not been this new, over the road bus yet, and it's going to be a disaster for me when it happens, because it's a different system; it's a bigger, higher bus. So it's a different operational system for the lift and the seats.
Jacobson
Could you tell me what the express bus is?
McQuade
Okay. You'll see a bus, and it will say something, "29," "b29." What it means is, this bus usually doesn't have all the stops on a route. It has certain stops, and the bus is inter-borough, usually. It's usually an inter-borough bus. You'll have Bronx buses that are express buses, and they'll pick up people at certain stops, and they'll make certain stops in Manhattan. Some of them may duplicate a subway line. They usually have more comfortable seats. They're more expensive. It's a three dollar trip. Transit workers get free transit on regular buses and subways, not on express. We have to pay for the bus.
There are express buses that are not over-the-road. Over-the-road will look like your Greyhound or your Trail Ways. It's a higher bus. The lift is not in the front door where the pasengers walk on. It's a little bit down from that, but it's not what we call the rear of the bus, and it operates differently; the seats have to fold over. Anytime we have new equipment that is a different operation, a different way of doing it, the drivers, we get more complaints, because the drivers have to learn a new thing. Until they get it down pat, and they do get trained and everything, and if you complain about a driver, they will retrain. Just from talking, I know this from--anytime they get a new system--it's like when the buses became ADA compliant, there was some trouble, because they have fail safe devices in them. On some of the buses, there was a sensor, if the driver leaned forward to do something, it triggered the sensor, which stopped the lift. It's a learning curve. This is not trying to cover up anything or make excuses; it's just that as we get more of these new express buses on, there are going to be more problems for the rider until they really get operating that particular bus down pat. Because it's a different operation.
Ours, you come on, you flip up the seat. You've been on them, so you know how they operate. This--it's like the door--you wouldn't recognize it's a door, because when they were first putting them on in Staten Island, someone I know in our office who's disabled was saying, "Those buses are inaccessible," and I said, "They can't be. They can't purchase them inaccessible." So I called up, and I found out that it's because you don't see a door. The driver gets out, he has to pull a thing, it opens up, he has to fold these chairs back. It's more complicated, and until they learn it, it'll take a little longer.
What I wanted to finish saying is that, we are in--from where we were three years ago when people were justly critical of some of the things in paratransit, we are light years away from that. Zero denial rate, we added on more buses. Every complaint that--they wanted better air-conditioning. They wanted better heat. They wanted grab rails--they wanted a grab rail here. Everything that we could do. They wanted more leg room for the ambulatory. I went on the paratransit bus purchases. They incorporated anything that they could do that the passengers ask for. Then we had the paratransit committee try it and everything. It doesn't mean on our rides these won't get bumpy, because people were complaining about bumpy rides, and some of the roads were horrible.
They put in a brand new--what is it called? It's called a granny. It's a brand new--you know the springs we have in our cars? What are they called? Shocks. Brand new. They were used on ambulances. We tried it. The new people who came on in paratransit are new--we put a vice president in charge of paratransit--and she, Pat O'Brien, and this other general manager, Jimmy Wilson, who came with her, they really reorganized things. We contract the service out, but they got better vehicles. We have more staff to go out and look at--. If we get a complaint--maybe not one, depending on what the complaint is--but if they're complaining about a particular driver, we'll send staff out to observe. We have staff that can go undercover. The carriers that we hire, they also have staff. They really, really are trying to follow up on everything that they can follow up on. It's not going to be perfect, because we have areas where, with the Nextels the driver can't hear the dispatcher, and he can't hear the drivers that won't answer it. They're calling for--in the trade--say you miss your pick up; we won't strand you, but it may take us hours to get to you. We're trying to add you on. It's called an "add on." Drivers don't want add ons. They don't want to take anybody more than what's theirs, so some of them won't answer the Nextel. We don't have a way of knowing you're deliberately not answering it. The future--what they hope to do, but it's down the road, is get interactive voice response. One is global positioning, so that they know where you are. It's through the satellite technology and all of that. The other is interactive voice response.
Customers now--we will do outside door to outside door, even though ADA says curb to curb. We have a thirty minute window. Customers don't like the fact that they may have to wait for thirty minutes, and we still don't come. Then they go up to call us, and then they come, and we miss each other. We don't have a resolution for that. So, with an interactive voice response, it'll be real time in terms of the information. You can call and say, "My ID number is blah, blah, blah. How far away is the vehicle?" and they'll tell you, "Ten minutes." You don't have to wait there for thirty minutes. You can come down in five minutes or something. That's stuff for the future. We don't know if it will get purchased, because first they usually pilot test something. There's been a big improvement. There are still a lot of complaints.
Reflections on changes in accessibility, portrayal of people with disabilities in popular culture, progress in attitudes toward people with disabilities
JacobsonI wonder, now that we have done the interview, looking back, have things changed? Have they stayed the same? What's your position?
There's more access. When you go out on the street here in the city, there's more curb cuts. Many of them are not perfect; there's not as many as there should be. You go to a restaurant, you can get into more places. You go to the theater, and they'll have a space for you to go. Some of the theaters have put in bathrooms, or they've made arrangements with the restaurants across the street for you to go to the bathroom if you want to. They have assistive listening devices. I think there is, without a doubt, there's much more--when you're going around and you're tryng to find a hotel room, you can get into a bathroom. If you're deaf, there will be a fire alarm that will be visual. For physically disabled, and for people with communication disabilities, you'll have plays that may be signed, tours of the museum that are sign tours. You can go on either/or, but they will have sign tours. There will be wheelchairs for people if they can't walk the distance. There's a lot more access. In terms of attitudes, I think there's been an improvement. When you look at when we're portrayed--I know people wrote critical things, like in WE Magazine, but when I saw Something About Mary, that was not--I don't know if you saw it?
Jacobson
No.
McQuade
If you get a chance to see it, see it. You may have a different take. But in this story, some people felt it was making fun of people with disabilities. I felt it's--when you can make fun of us, like you can make fun of anybody. If you and I were wheeling along, and we slipped on a banana peel and that was in a movie, I would laugh at that. It would just be funny to me. But in this movie, the woman who this guy is in love with, or these different guys are in love with, she has a disabled brother. He has probably mental retardation. I think that's what his disability was. It was something if you say something or do something, he gets all hysterical and screaming.
She loves her brother. He's with his family. There's one guy who's trying to date her. He's a really sleazy guy. He's talking about being with "the retards." He's being nice to get to her. They're playing a game of touch football, and he's crashing into them. It was showing a family and a person who really loves her brother, who has an absolute disability that is--it's not a hidden disability. She loves him. She wants him with her. She participates in the games and stuff. It's not condescending. But, people talk how they really are--this one guy who's faking that he's disabled, because she's so kind-hearted and so open to all this. This is the pizza delivery guy. This is a guy who's faking he's an architect with an English accent, and he walks on crutches. He's not really disabled, but he figures that's the way to get to her. That's unique.
This guy who wrote this article felt it was making fun of disabled people. I have a dark sense of humor, but what I always used to find horrible was when--you may have seen this movie. Natalie Wood did a movie, TV movie. She plays a woman who has polio. She's Natalie Wood. She's beautiful. She writes music. She's talented. She drives a car. She walks with crutches. She's Natalie Wood! It's like Marilyn Monroe with crutches and she's this self-loathing, neurotic person.
Jacobson
Right.
McQuade
Now, yes, there are self-loathing, neurotic disabled people. That offended me. I'm sitting there saying, "Why can't they show, for a change, just a person who's a normal disabled person? Who's not totally having her whole life controlled by the fact that she
I don't mind if nondisabled people play disabled people. I think that you want to have--because to me, acting is make-believe. You playing somebody with cerebral palsy is not an acting job. Me playing somebody who is in a wheelchair is not an acting job. Granted, if you're an actress, and you can do the character, terrific. It can't always be--you may not get the character right. I guess what I'm saying is I think there's more opportunities there. You do see people, like in commercials, just going by wheeling their wheelchair, or playing ball or doing something. That we never saw before; it would have to be a telethon. So I think there's more opportunities. I think the golfer--I was really so happy when he won that Supreme Court case.
Jacobson
Yes.
McQuade
I was talking about it with people, and I said, "Is golf about walking or is it about hitting a ball into a hole?" If it's about walking, then yes, we would have an advantage using the cart. But walking and not getting that ball in the hole is not going to make him a champion. I think that's a really good thing.
When those two women tried to be covered the ADA because they wore glasses, and one company would not hire them, I would have been appalled if they won that lawsuit. Not that something can't go broader than how you envision it, but when I was being trained on the ADA, it's not that you and I can't be a baseball player if something's wrong with our arm; it's that a whole class of jobs is closed to us with our disability without an accomodation. The cases where the fellow had high blood pressure and it was under control, that, by the training I received, he was disabled. I use a wheelchair. It doesn't mean I walk. It doesn't mean that. It ameliorates the condition. I don't have to crawl along the ground, but I'm not able to walk, and I'm not going to be mountain-climbing, though there may be some who do. I think those kinds of things.
Theres's one guy here in New York. He actually went to NYU and graduated before I did. He's a newscaster on Channel 9. He uses a wheelchair. There was a fellow who's also a newscaster, [John] Hockenberry; he uses a wheelchair. To me, there has been progress. What frustrates me is that, I really think where the emphasis should be now, and the negative side of the ADA, is, I think, some of the accomodations, that should be the government's responsibility. I think it would make the entry of people into jobs easier if a company--they can hire you, or they can hire--. I'm not talking about having an accessible building per se, but I think, when you have to come in, you don't discuss it in the interview, but people look at you and say--even though they don't say it, even though they don't ask you the wrong questions--they look at you and think, "Oh my God, I'm going to have to do this. Oh my God, I'm going to have to do that." When you don't have a hidden disability.
Looking toward the future: more governmental responsibility for ADA compliance
McQuadeIt seems to me the better way of doing this is with the concept of vocational rehabilitation, these are things that are disability related. These are where you want the rehab engineers, the communications people. You want that stuff to be: You come in. You get the job. These people come in, and they can do it fast for the person. The person doesn't have to sit around for months, not doing anything, while some company--and then this person negotiates with the VR agencies about who will pay for what. I'm not saying it doesn't get done, because certainly for Michael, they made accomodations. But if you have an agency that's responsible, and they have the experts there, and you know you're going on the interview, or say you're going on the interview and you're going to have to do something with the computer, and you need certain technology. Wouldn't it be better to have people that could come in and supply you with something that you could do it, rather than having to negotiate some of these things?
I think what I would like to see for the future, I would like to see some of this really techy sort of thing dealt with by the government. Employers, they can--they could lower this, they could lower that, but when you're talking about equipment, and you want the person to--frankly, in my opinion, have their own equipment. If I go to a different job, I should be able to take it with me, whereas if the agency buys it for you, that's theirs.
I also think, I realize it's not done differently in other civil rights laws, but I also think what we should be pushing for is a--we should be pushing for ADA compliance people. With this law, one of the difficulties is that it's very time consuming to fight every single--bring up every single empoyer--not employer, place of accomodation who hasn't ramped their step. We really do need--and this, in a way, it could be the role of the centers, if they had the right training, and they had technology people and all of that, to police--we need an ADA police force. I realize in every civil rights law, including the ADA, [we are it], but the truth of the matter is there is not enough time in the day to follow through on every place that you see that isn't in compliance.
I really believe it would also be good--I see this as an excellent place where centers could really be the focal point. Where they go out and do it. The place is made aware if there is any tax deduction. A lot of places are small mom-and-pop. The big places can do it. It's really hard for these people. They may not have the money to lay out initially and wait for the tax deduction. If there were ways of doing it--. I'm not going to try to solve this tonight, but I think that these are some of the things that we need to be looking at, how could we do this better, because we're missing opportunities. Things are not getting done that could be done.
It's not only physical things, but communication stuff. The technology is out there to make things much better, but it's got to be done with governmental help. It really does. It's going to take much toò long to do it otherwise. I guess I'm hopeful. I also think that this could open up areas of employment for people who have more severe disabilities, because the technology eliminates a lot of problems if you have the intellectual capacity. Often times, people do. I just think we need that momentum. We need to say, "This was our first shot at it. This was the best we could do at that time, but we think there's a better way of doing this." I think those are some of the things for us to focus in
Jacobson
We covered a lot of ground. Is there anything you want to add at this point?
McQuade
I'll probably think of it later.
Jacobson
Thank you.
McQuade
You're very welcome. I did think of one thing; it's been great seeing you again.
Jacobson
Thank you.
McQuade
It really has. That's the nice thing when you meet people from the movement that you knew at one point in your life, and you haven't seen each other in a while, and you see each other again; it's very nice.
Jacobson
That's why I volunteered to do it.
McQuade
It's been fun.
Jacobson
Okay.
Disability Rights and Independent Living Movement Oral History ProjectMarilyn SaviolaThe Move to Personal Independence and Activism, Director of the Center for the Independence of the Disabled in New York, 1983-1998Interviews conducted by
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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 Marilyn Saviola, dated July 9, 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:
Marilyn Saviola, The Move to Personal Independence and Activism, Director of the Center for the Independence of the Disabled in New York, 1983-1998, 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 I, Regional Oral History Office, The Bancroft Library, University of California, Berkeley, 2004.
Tape Guide
- Interview 1: July 9, 2001
- Interview 2: July 11, 2001
Interview History--Marilyn Saviola
Marilyn Saviola was invited to participate in the oral history project because of her leadership role in the development of disability activism and advocacy in New York City starting in the late 1960s and continuing through to the present day.
The two interview sessions on July 9 and July 11, 2001, totalled three hours and reunited Ms. Saviola with the interviewer. They had been friends during college but had only intermittent contact over the years. The sessions took place in one of the sparsely furnished (small round table, swivel chair, bookcase, and telephone) counseling rooms of Independence Care Systems, Inc., where Marilyn is employed as director of advocacy. Though she lives in Brooklyn, her office is located in midtown Manhattan, a convient meeting place for both Marilyn and the interviewer. The audio tape picked up the sound of Marilyn's portable respirator, which she paused to use at regular intervals. There were also a few brief interruptions by staff regarding office matters.
Most noteworthy in the interview is the parallel Marilyn draws between the development of her personal independence and her activism in the early disability rights movement. A fourteen-year resident of Goldwater Memorial Hospital, by choice, Ms. Saviola transitioned into independent living after her years of involvement with the grassroots disability rights movement, first as an undergraduate on her college campus and then as an activist in Disabled in Action, of New York City. Ms. Saviola also chronicles her experiences as a graduate student using a wheelchair in a physically inaccessible rehabilitation counseling program, her previous work as executive director of the Center for Independence of the Disabled of New York, and her present position as director of advocacy for Independence Care Systems, Inc.
The transcript was lightly edited by the interviewer and then reviewed for clarity and content by Ms. Saviola. She made minor changes and additions.
A videotape of a group interview with Ms. Saviola and several other New York activists supplements this interview. The videotape is available for viewing at the Bancroft Library at the University of California, Berkeley.
Interviewer/Editor
Oakland, California
I. Early Years, Goldwater Memorial Hospital, Education, Activism, 1945-1973
Family background
Marilyn, let's start out with something simple. Tell me where and when you were born and about your family.
Saviola
I was born in 1945, in New York City. I was born in New York Hospital, which is in Manhattan, but grew up in the Bronx--the only child of my parents. My parents are first generation Italians and we lived, up until I was five or six--in an apartment house in the Bronx with my grandparents, my maternal grandparents. Then when I was about five years old, six years old, we moved to our home. We bought a home, one of these mother-daughter houses. And I lived upstairs with my mother and father and my grandparents lived downstairs. And I lived there--until I was a teenager at about 17.
Jacobson
Where?
Saviola
In the Bronx, in the North East Bronx , around East 233rd Street, around there. And when I was ten years old, I became disabled. But up until then, I had lived in this little suburban area. And actually after that, when I wasn't living in an institution, that's where I was living.
Jacobson
Okay. What were your parents names?
Saviola
My father's name was Peter, and my mother's name was Camilla, but they called her Millie.
Jacobson
And what type of work did they do?
My father owned his own business. He had a candy store/luncheonette. And lots of times my mom was between a stay-home mom and helping out in the store. She would go in several days a week to help out. One, she would do the bookkeeping for him and stuff like that. She had a little cigar box that she kept all the bills in. She actually worked at the store helping my father out behind the counter several days a week for a few hours.
Onset of polio, 1955
JacobsonCan you talk a little bit about when you became disabled?
Saviola
I was ten years old, it was August of 1955. It was during when they had all the big polio epidemics. And the Salk vaccine had just come out a year or so ago, but I hadn't been vaccinated yet. I was supposed to do it when I went back to school in September. We were away in Connecticut with some family, my mom's family, my mother's cousins or something. And I got sick there.
I woke up one morning with a horrendous headache and stiff neck. We didn't know what was wrong, and that day I kind of just went through the day, but really feeling horrible. That night I had a high fever and my mom called my father to come and get us. Because apparently, as a kid, even with all the childhood diseases like measles, mumps, I never ran a fever. So when I had a fever, she thought something was wrong.
They took me home to the Bronx, and the doctor came to the house and said I had to be admitted to the hospital. They didn't know what was going on. At the time, they didn't know if I had polio or meningitis. The doctor didn't want to scare me so he spelled out polio so that I wouldn't understand they took me to this place called Willard Parker Hospital, which had a contagious disease unit on it. So they put me there.
Jacobson
In the Bronx?
Saviola
No, in Manhattan. It was right off the FDR [Franklin Delano Roosevelt/East River] Drive, by the old Con Edison Plant.
Jacobson
Is it still there?
Saviola
No, they condemned it many, many, many years ago. [laughter] And I remember lying in the bed, and I remember getting better. I mean, waking up in the next day and everything is fine. Then all of the sudden getting very sick again. I don't remember anything except lying in bed, and being on my side and not able to turn back onto my back and the next thing I knew I was in this iron lung.
I was in this huge room where I guess there were maybe four or five other people, and they would always die--apparently I was one of the few people who ever survived in that room. And since I was a kid, and they wouldn't tell me they died. They told me they went to rehab. [laughter] You know, it's--whatever. So I stayed there until I got over the contagious stage and was weaned from an iron lung and was able to use a chest
Impact of disability on home life
JacobsonHow was that?
Saviola
It wasn't bad when I was young and "carryable." Because my parents would, you know, carry me downstairs. Someone was always around. But as I got older, and it was harder to get out, and as I wanted more freedom, it became a real issue. My father would either have to come home from work to carry me downstairs, or the kids in the neighborhood, would do it. As I grew older the kids in the neighborhood, would come around to hang out if they were around, but they weren't always around anymore because they were at an age now where their horizon expanded beyond the block. This meant that I was stuck inside. My independence, the ability to get outside, depended on either my father coming home or getting help from the guys in the neighborhood
Jacobson
What did you do about school?
Saviola
I received home instruction, three days a week for an hour and a half a day
Jacobson
How was that?
Saviola
I think I had some very psychotic teachers. [laughter] I mean, I had teachers who would spend the whole time talking to my mother. This one woman would spend her time telling my mother all her troubles. I had a math teacher who was very nice, and an art teacher. But I don't know how I learned anything. I really don't. All I remember the teachers doing was assigning homework and reviewing it. I have no recall on ever having actual classes, although this was supposed to happen.
Jacobson
You had an art teacher?
Saviola
Yes, I got an extra hour a week if I took art. But I had no talent, absolutely no talent, but he came once a week. But he was a nice man, Mr. Gershowitz and it was someone else coming into my home who was not part my family that I could talk to.
Jacobson
What did he teach you?
Saviola
He taught me how to use a felt tip pen, and I remember, we would dye egg shells and then he would have me put them on like a picture, like it was a mosaic, it was called. And he taught me how to make ashtrays. It was art--therapy. It was like you did in an institution, the arts and craftsy type stuff. I learned nothing about art or artists or anything about art history.
Were you that coordinated?
Saviola
I didn't get you.
Jacobson
Were you coordinated enough to do that?
Saviola
It wasn't so much the coordination, it was that I had very had limited space that I was able to reach. I didn't have enough movement in my hand to move my hands much So, as long as it was in a certain space, I could do it. Then someone would have to move my hand to another space and I would be able to move my hand to cover the new area , so it would take forever.
Jacobson
Was there a wheelchair in the house?
Saviola
Yes, I used a wheelchair in the house, or I sat on a chair in the living room, like a wing chair.
Jacobson
And they carried you?
Saviola
Up and down like a sack of potatoes or as I got bigger two people would carry me in my wheelchair, bouncing me on each step. We had thirteen steps, and they would carry me up and down.
Jacobson
So, how do you think the disability impacted on your parents and friends?
Saviola
I don't think my friends really saw me as an equal. I was someone whose life was a tragedy. I know my family never accepted it, totally didn't, and always thought of it as if I prayed enough, and they were good enough, they said enough novenas or whatever, and if I believed enough, I would be cured. So this was never seen as a permanent situation. So, they never accepted it. At that point, I honestly don't think I did, either. Because, I never thought about the future. My only thinking and planning was for the present. I guess that I didn't think I had much of a future either. I never saw myself beyond today. I never thought about the future or anything like that.
Jacobson
What about high school?
Saviola
Same way, until I was about sixteen, going on into my junior year. Until I was going on sixteen or seventeen, where at that point I would go into Goldwater for check ups. Besides going into Goldwater for checkups my parents, especially my mother really, really thought that if I used the respirator less, then I would get stronger and would need it less. So they were constantly weaning me off it. And I began to have problems because of that. I wasn't getting properly ventilated, so what they call your CO1, your carbon dioxide level, would go up so high that I almost died a couple of times. So that I would wind up in Goldwater, back in an iron lung, I almost went into heart failure twice because of this. Because of this I missed a lot of school. I was always very envious of the kids in my neighborhood because they would talk about their school activities, the social activities that is, I felt left out. Not only wasn't I getting the education that the kids were getting I was not getting a social life.
At that point, I began to realize that I was much happier not being home but being in an institution. You know, because there were other activities, I was able to get in and out without being carried, and I saw other people there. Then I began to think about wanting to do something with my life.
Decision to live at Goldwater Memorial Hospital
JacobsonWhat was the staff like?
Saviola
The staff was either the greatest or the worst. There were very few people who were just regular people. You had some people who were really, really not good people, and a lot of great, great people who really took an interest in what you were doing, talked to you, became friends with you, stuff like that. And they became friends. However there was always this boundary that you weren't supposed to be friends with the staff. I can tell you how actively this was discouraged and how hurtful this was.
Jacobson
Okay, and by staff, who do you mean?
Saviola
Anyone from the nurse's aide, to the recreational therapist, physical therapist respiratory therapist nurses, that type of thing.
Jacobson
What about the doctors?
Saviola
The doctors were, mostly residents in training and from other countries who were not very good. Then there was Dr. Alba, who was the director of the respiratory care service at the time.
Jacobson
Alba, what was his first name?
Saviola
Her first name, was Augusta, is Augusta.
Jacobson
Oh, Augusta.
Saviola
Yes, Gussie. And she's quite a dynamic woman. She really kind of helped me in a lot of ways, in terms of--once I decided I wanted to do something with my life other than being the invalid living at home, she backed me on it, and helped get me accepted into LIU [Long Island University].
Jacobson
Oh, yes. When did you decide, or your parents decide, to go to the institution?
Saviola
I kind of decided, my parents never did. Just because I was miserable at home. I had a lot of friends, but when you're getting to like sixteen and seventeen, they all would go out and I would be stuck alone. So I had nothing. At least in Goldwater I had a peer group, you know, and I got out. So, they became my peer group and my family of choice. I would go into Goldwater for an evaluation and for a respite and there was another friend of mine who was in a similar situation and every summer they would
You know, if there was something wrong, if I had one of the episodes and I wasn't breathing properly, we'd stretch it out for months sometimes. And Dr. Alba knew it. She knew that I was very unhappy at home and although it was never a stated thing, it was kind of worked into it and never discussed that I would stay there. And I finished high school in Goldwater.
Jacobson
Tell me about the peer group.
Saviola
On the unit that I in was at the time, most of the people had had polio, and had either never left Goldwater, or had gone home and had not good experiences and came back in. Plus a couple people who weren't with us at Goldwater And we were--oh, there was Virginia, Mary, myself, Bibi, and Bruce. I guess we had eight or ten people. We were all in our teens and early twenties.
Jacobson
What were their disabilities?
Saviola
Mostly polio, some spinal cord injuries, some cerebral palsy. Muscular dystrophy, too.
Jacobson
And then you all got together?
Saviola
We were--. Some of us were in the same room, because they tried to keep the younger people together. This was early on before they had a special unit for us, but this was like when I first went back to Goldwater.
Jacobson
What kind of place was Goldwater?
Saviola
It was a long term care rehab facility in the middle of an island in the East River, between Queens and Manhattan and the wards at the time were these huge wards--where they would have one, two, three, four-patients of different sexes and ages sleeping in living in the same cubicle. They had three large rooms and four beds or five beds in each area. So you had a cubicle about the size--maybe this width--maybe a little wider, which was your space with a curtain.
Jacobson
So something like, about six feet square?
Saviola
Yes, not even square, it was more long. A length of a hospital bed plus maybe six, or 12 inches. Longer and maybe an additional foot or two on either side of the bed.
Jacobson
Okay.
Saviola
And sometimes you had someone right next to you. On one side of the curtain, on the other side you had the whole area to yourself.
Jacobson
Okay.
So we would see people there, and then they would have all these volunteers who were also teenagers--like the candy stripers, Red Cross volunteers--we all became friends with them. So you developed peer groups that way.
Jacobson
Okay. What did you think about disability at that time?
Saviola
I thought it was unfortunate. I thought--I couldn't understand--I couldn't understand why this happened to me. What I had more trouble reconciling was why I was happier living in an institution than at home. And that, to me, was a really--something that I did not think anyone would understand. I had more trouble, I think, adjusting to that or coming to terms with that, rather than what I thought of disability. At that time, I thought my life could be quite happy just living in Goldwater with all these other people. But as I had more and more outside influence with these other kids coming in and doing things, I realized that I wanted to do something, too.
Jacobson
Did your parents come to visit?
Saviola
Yes, regularly. My father would come several nights a week and my mother twice a week. Everyone would come on Sundays, grandparents, aunts, uncles, cousins, the whole bit.
Jacobson
Wow. What happened--you were seventeen when you were finished with high school?
Saviola
Right, I think I graduated high school when I was like, eighteen and a half because I missed so much time because I'd been sick.
Jacobson
And did they have, like, a classroom?
Saviola
They had a one room schoolhouse where everyone was in it. Plus the home instruction teachers came, so we had both. But the teachers there were actually a much better quality than the ones I had at home.
Inadequate education supplemented by volunteer tutors
JacobsonWhat kind of education do you feel you received?
Saviola
Very, very inadequate. I think the only thing that carried me initially was that I had been in a parochial school. So I was a little advanced of where the kids were prior to my disability. And when I got back into Goldwater--you know, I had tutors, a couple of the volunteers would help and tutor. That's, you know, how I got through high school, and took the regents.
Jacobson
Where did the tutors come from?
Saviola
Local high schools in the area. A couple of them came through the recreation department, they had a tutorial program. The National Council of Jewish Women had a program where they would come in on Wednesdays and Fridays and help us. Not so
Jacobson
Okay, now most places in the country don't have regents exams, can you explain what they were?
Saviola
The regents exams were competency exams that you needed to take if you wanted to go to college and get an academic diploma, as opposed to a regular or commercial diploma. So, if you wanted to go to college, you had to take regents. There were required regents, math and English. And then you could take other exams, like if you wanted to--. If you excelled and wanted to go into science or math--history, I guess, or language, you could take them. But I only took the math and the English. And I guess--I guessed my way through them. And I swear that I didn't know the stuff, I just guessed.
Struggles for admission to Long Island University, 1965
JacobsonWow! So tell me how you got into college?
Saviola
My friend Bruce, who was also with me at Goldwater, really wanted to be a lawyer, and he wanted to go to school. His mom was someone who was really in his corner, pushing for him. Between her and Dr. Alba, they found LIU [Long Island University]. And he was expected at LIU, and actually went on to classes from Goldwater each day. Bruce was one of my role models, my hero, so I applied to LIU, thinking that if they accepted him they may accept me. Never giving any thought to how I would get there, would pay for my education, and how I would function in the classroom and get my work done and all that. So I then had to--
Jacobson
How did Bruce get to--
Saviola
He finally got OVR [Office of Vocational Rehabilitation] at the time, DVR [Department of Vocational Rehabilitation], I guess, at the time, the state vocation rehab agency, to pay. And he got a scholarship also, so since he had the scholarship, they [OVR] paid the transportation. So I applied for sponsorship to OVR and they turned me down. They told me that my disability was too significant, and I could never work. I wrote a letter to at the time Senator Jacob Javitz, saying, this wasn't fair, they're not giving me a chance, et cetera.
The thing was that OVR said that if I could get accepted into a school, they would sponsor me on a one year trial. So I got accepted into LIU. But the first semester or two, they wanted me only to--you can classes via a telecommunications device called Executone, which was a speaker phone, so that I could hear what was going on in the classroom, and by clicking a switch I could ask questions and they could hear me. So I did that. And it was horrible--all I had was the work and none of the fun of going to college.
Then I decided I wanted to try going out to classes on campus. So I started going out to class two days a week, and getting the Executone three days a week. I gradually worked it up to full time at LIU. At first I would never go out alone. I always had someone who would go out with me. Until I met you who would feed me lunch at school [laughter], and a couple other friends. I started making friends.
Jacobson
[laughs] It turned out to be good practice.
Saviola
Yes, yes.
Jacobson
But you, how did OVR, or DVR, support you?
Saviola
They provided my transportation, and paid the tuition and books.
Jacobson
And how did you get connected with DVR?
Saviola
At the time, Goldwater had had a vocational rehabilitation counseling program. The rehab counselor was the one who referred me to OVR.
Inadequate accessibility on campus
JacobsonOkay, tell me a little bit about LIU, it's Long Island University.
Saviola
Well, even though it was Long Island University, it was located in Brooklyn, in the heart of downtown Brooklyn, which is a very, very urban area. And the campus wasn't a campus. I think, at the time, it was two or three buildings with a little concrete area between the dormitory and the other buildings. The main building actually was in the building of a movie theater, the famous--at that time--Brooklyn Paramount Theater. They had it converted and made into the university. The reason we went there was it had the first college at the time to have a disabled students program. So the thinking was if you went there you would get all this great support, like in dealing with the professors and taking exams. As we all found out later, that wasn't so. But maybe that was to the betterment of us, because we had to come up with our own solution. So, I would go to LIU and--also because Bruce went there and had a good experience.
Jacobson
Who handled these things?
Saviola
A man by the name of Theodore, or Ted, Childs, who was a physical therapist by occupation, who actually had worked at Goldwater. So that's part of where that connection for me came down, too. So he knew that for people with disabilities to attend classes at colleges they needed reasonable accommodations, therefore, he set up the program, him and--what was that woman's name?
Jacobson
Gay Harvin
Saviola
Yes, Mrs. Harvin. Oh! We would do that, and I would go to class. Since I couldn't write, I couldn't take notes in class. What I would do is bring carbon paper with me and
Jacobson
How accessible was LIU?
Saviola
At the time, I thought it was phenomenally accessible. But it really, in reality, wasn't. Most of the school was inaccessible, but what they would do is put our classes in a classroom that you can get to in a wheelchair either by an elevator or ramp. After I was there around about a year or two, they opened a new building which is much more accessible, the H building, the humanities building. Stuff like that--. I mean, going to the library was a joke because it really wasn't at all accessible nor could you get any help unless you brought an able-bodied person with you or a person whose disability was less than yours with you. I mean, the staff never offered to be of any help.
Jacobson
You probably were one of the first people there in a motorized wheelchair.
Saviola
Right, just me and Bruce. At first I didn't take my motorized wheelchair with me, so I would have to get pushed by an able-bodied person from point A to point B.
Jacobson
How did you get a motorized wheelchair?
Saviola
I don't know, I don't remember. I got it while I was in Goldwater. I don't know if they got a donation to get some, I don't really recall.
Jacobson
Because it wasn't that common.
Saviola
No.
Jacobson
What year was this?
Saviola
I graduated in '70, so this had to be '65, because I was there about five years, at least five years.
Jacobson
Do you have any recollections of--how did people treat you?
Saviola
I remember that I knew no one and being very scared. And Bruce, at lunchtime going into the cafeteria and sitting with Bruce and his friends and having lunch, and stuff like that. I used to be terrified of going in the classroom for the first time. I hadn't been in the classroom since before I was disabled at age 10, so I always got very uptight. I didn't know where to sit. I would have to try to hope someone would say hi so I could ask them to take notes. And hoped that I knew somebody in the class. And at that time, I never ran into another person with a disability in the classroom. I was always the only one, up until you were in my class with me, we did the sociology.
Jacobson
I remember two classes.
Saviola
Well, Haynes' is the one I remember--
Recalls Judy Heumann
JacobsonWhat about Judy [Heumann]?
Saviola
Judy was great. I mean, Judy always seemed to fit in so perfectly. That had never even been an issue for her. I know she had a motorized chair, but I always visualize her as zooming around, when I think about it now. But in reality she probably didn't have one, either.
Jacobson
How did you meet her?
Saviola
She came up to me. She was very political. She said, "You've got to join us, we're organizing!" Or something to that effect. And she knew some of the people from Goldwater, and Sharon Stern and all, so that's how I got to meet her.
Jacobson
What were you organizing?
Saviola
It's embarrassing, we were organizing a disabled students' organization on campus, a club, because we wanted a club like other groups. And when I think about the name, and when I reminded Judy of this, it's very embarrassing. Do you remember what the name was?
Jacobson
What name?
Saviola
The Handicapped Integration Movement, HIM.
Jacobson
Yes, but I remember that happening after she graduated.
Saviola
I thought it was happening about at the same time that Judy was there.
Jacobson
What I remember is Judy was already gone, she was fighting--.
Saviola
--the Board of Ed[ucation]. Okay, it could be. But I remember you, I remember me, I remember, a guy, and I can't think of his name. Two guys. One had red hair.
Jacobson
Jon Charnik.
Saviola
Yes, Jon Charnik.
Jacobson
And Michael Masters.
Saviola
Right. I remember them. And I remember working with them. I remember the other person from Goldwater who was attending classes that Long Island University didn't want to have anything to do with forming the group. Sharon was there.
Jacobson
Why?
Saviola
She never saw herself as doing anything except going to the classes.
Becomes an activist
JacobsonWhy did you join?
Saviola
Because I was beginning to become an activist. I had started to get involved in Goldwater at trying to make the environment at Goldwater better. Getting us a new special unit where the younger patients with goals of obtaining an education or getting vocational training would be in the same area. The younger people in Goldwater were patients were scattered throughout a hospital in an environment which was designed for frail elderly people. Therefore the whole emphasis of living in Goldwater was designed to meet that population's needs . But the whole emphasis that we needed was different. It was on vocation and education and getting people out. And my friends who had worked at the hospital were all involved in antiwar stuff and things like that.
So it kind of all got swept up into it. It all kind of made sense. You know, we were all involved in Vietnam antiwar, activities on campus but we were also about we need our civil rights too," and I remember, we had one goal, it was to make the campus accessible. It had nothing to do about anything outside of the university. We never thought about what happened when we left. At that point, we're just making the campus accessible. And that's when we met some of the people who would form DIA, Disabled in Action. Some of those characters, who weren't on campus. Like Pat and Denise Figueroa, Denise McQuade, people who never went to LIU.
I remember trying--wanting to organize to help Judy with the Board of Ed stuff and things like that. And I remember ABC, which was the group that kind of started me as an activist and the disability rights movement in New York City. At that same time, you remember the Architectural Barriers Committee?
Jacobson
Yes.
Saviola
With Julie Shaw and Anna Fay and all those people?
Jacobson
Yes.
Saviola
And that kind of concurrently was going on while we were doing this stuff at LIU. Maybe it even preceded it a little, I think. So, we didn't like the way in which our needs were being ignored by the City. So we organized and began to see that we were powerful when we joined together. This was empowering. For the first time in my life I actually felt that I was part of a social movement that would be changing the way in which people with a disability participated in society. One of the people involved in your movement was Julius Goldberg. Do you remember him? I heard that his wife died recently.
Jacobson
Oh, really?
Saviola
Yes, someone had told me that a couple of months ago. But I remember, we felt that they were very conservative, that all they were looking at were very narrow issues.
That all they were interested in was removing physical barriers. We were much more interested in fighting for equality and our place in society. They weren't very militant, and we wanted to be more militant.
Jacobson
Well, weren't they older?
Saviola
They were, they were about ten years older than us, I think. And then people like Phyllis and Anna kind of agreed with our broader goals.
Jacobson
Phyllis?
Saviola
--Rubenfield, and Anna Fay kind of broke away from them, too. And they formed NPF, the National Paraplegic Foundation.
And there were all these groups kind of loosely floating around. I don't remember the order, because we were forming so many things. There was ACCD [American Coalition of Citizens With Disabilities] that came out of a group of activists including us who were participating in meetings of the President's Committee on Employment of the Handicapped.
Jacobson
That came later.
Saviola
I remember meeting in my house, in my apartment. We used to have lots of meetings in my apartment.
Jacobson
Yes. Where is it?
Saviola
Downtown Brooklyn, right across the street from Long Island University.
Jacobson
So you were living in the same building as Judy?
Saviola
Yes. Even though I saw much less of Judy after I moved in. Because, she was then in a graduate program and getting ready to move. I graduated LIU in '70, went to NYU, New York University, for my master's, but didn't move into my apartment until 1973. So, I was kind of out of it a little bit, or just tangentially involved for that two year period, when I was in graduate school.
And I think what kind of happened is when DIA started, Judy came to me and said, "Can we have the meetings in your apartment," or something like that, because my apartment was larger than hers and she had roommates. She was always having different roommates.
Disability in a sociological context: getting more militant
JacobsonYes. First of all, what happened on campus?
On campus we formed an organization. We had to get a faculty sponsor, and we got one. Al [Alphonso] Haynes became our faculty sponsor, he was our sociology teacher.
Jacobson
Now, why did they pick him instead of Ted Childs?
Saviola
Because Ted Childs wasn't doing anything. Part of our issues were against that office, and the fact that the office wasn't responsive to our needs. So we could not very well have picked him as a faculty advisor. So what we did is approached Professor Haynes because we knew he would be an activist and also because we knew that he shared our beliefs. I guess that he was the person you and I knew best and admired best as a teacher. At that time he was our sociology professor. Al Haynes challenged us to look at our disability as a sociological concept. You know, as a minority group and with all its ramifications, which I had never done before.
Jacobson
What would he do?
Saviola
He made us think. He would challenge us to look at what was happening, why we were--why people were not aware of our issues. Why people discriminated against us but never really thought they were discriminating, or it was anything. Why society attributed certain characteristics to us. And he got us to look at it, and he said, then why are you different than people of color? Why are you different from gay or lesbian people? Why are you different than any other minority group person. And he would challenge you.
Jacobson
So he put a name on--
Saviola
--yes, he put a name on it. He said, yes, these things are going on, but these are sociological concepts. These are things--so he gave it a fresh--.
Jacobson
You never thought--
Saviola
I just thought this was the way my life was, I never had analyzed it any way academically or looked at why. It was just, this is the way it is, not why.
Jacobson
And he gave it a framework?
Saviola
Yes, and at the time we were beginning to get much more militant about our movement. Wanting for change to occur through the goodness of well-meaning--this wasn't enough. We would demonstrate, we would do things, you know. I remember at the same time in those early years--I had briefly mentioned that at the same time I'd got very involved with the politics of Goldwater with my peer group. Since Goldwater was 99 percent, 98 percent frail elderly, many times very disoriented, people, we felt that all the programming activities had been geared to that population and not ours. So what we did was ask for a special unit with special services, which we got, that had hand selected people to work with us, people who didn't wear uniforms. We had our own social workers, psychologists, recreation therapists, and activities were geared to helping you get out. So that if I had a nine o'clock class, the night shift would get me ready. Where if you were in a regular institutional part of the hospital, no one would think of getting you ready on time so you can go to school. That had no priority.
Marilyn, how did they start it? What were the steps?
Saviola
A group of us really started saying we need to do this, we can't survive, we want to get out of here. But we're going to have to be here until we can get out, so we can get an education, get some training, whatever. We need the supports.
We got Dr. Alba, actually, who was then the assistant director of rehab, to listen to what our concept was. And she backed it, and then we got some of the other professional staff to go with it, and they decided to do this as a research project. So they created a young adult unit, which really was-an amazing feat considering the bureaucracy and lack of insensitivity and understanding of the hospital administration. The whole emphasis was that you had to have a vocational, educational, or independent living goal to be on that unit, and everything was geared to helping you get out of the hospital and into the community.
Independent living without key elements
JacobsonSo, was there, at the time, a real concept of independent living?
Saviola
Yes, it didn't have a name, but it was the concept.
Jacobson
And was it the same concept?
Saviola
No, it was getting people to live in their own apartment in the community, but it wasn't empowering people so that they could do it on our home. It wasn't a concept that reached the importance of peer involvement in the process. You worked with professionals to help you do this. So there wasn't the empowerment or the peer element of independent living. The only peer element was the support you got in the process from other people who were going through it at the same time. Not mentoring.
Jacobson
Okay. Dr. Alba, tell me what she was like.
Saviola
Right now, she's about in her late seventies. When she first came to Goldwater she was a resident physician in rehabilitation. We met in her when she was a resident. She then went on to becoming a neurologist as well. And she had seven children, and worked full time, and she really believed that people with disabilities don't have to spend the rest of their lives in institutions. Given the supports and proper services you could do anything, and she really fought for that.
Jacobson
Did you have any feeling about where she got that?
Saviola
I have no idea.
Jacobson
Because there were so many people in that profession who didn't have that idea.
Saviola
Definitely.
So what made her more aware?
Saviola
I don't know. Except that, I think--that when she was in medical school and into residency, that she was either the only woman or one of the few women. What she said, she felt at the time when she was in her residency and in medical school that she was the only woman in her program, and she was constantly told, "You can't do this, you shouldn't do that." I think she had no way to direct her feelings about this and channeled them to helping people with disabilities to live independently. Maybe we got some of the fallout from it.
Jacobson
Or maybe she became aware through--
Saviola
Right, and she always said, "Well, why not? Why should someone spend their lives in an institution just because they were disabled. Why?"
Demonstrations against Office of Vocational Rehabilitation and Goldwater Memorial Hospital
JacobsonOkay. Tell me about LIU, I mean NYU.
Saviola
--one of the last, one of the first significant--two of the most significant things that happened at that time were my involvement with DIA and the disability rights movement at LIU. There were two demonstrations that stand out in my mind. The first demonstration I ever went on was one against OVR. They were going to limit college sponsorship for people with disabilities. We protested outside of the governor's office demanding our rights I was living in Goldwater at the time with the two other people, Roberto and Mary, who were also living there who went on the demonstration.
Jacobson
Mary who?
Saviola
Mary Ruth. No, it wasn't Mary Ruth. Mary Ruth was already go--right. Who was the third person that was with me? Maybe it was Mary, I can't remember.
Jacobson
And Roberto?
Saviola
Roberto Goldberg, who subsequently went to LIU later on.
Jacobson
I remembered the name. I can't--.
Saviola
Yes, I was going out with him at the time, that's probably why you remembered him.
Jacobson
I can't remember why.
Saviola
So, we wanted to go on the demonstration and if you were in Goldwater you needed to get a pass if you were going out. And the doctor refused to give us a pass, so we had to sign out against medical advice.
And, I remember as we were signing ourselves out, they were taking our stuff. You know, your clothes, your possessions, and putting them off the ward. And we were gone something like five hours, and when we came back, we had been discharged and they had to re-admit us. And they put us on different wards, in a different part of the hospital. That lasted for about two days until Dr. Alba could get us back together on the young adult unit. So that was the first demo I went on.
Jacobson
How did you get there?
Saviola
We used the van service that OVR was paying for us to go to school. I had a couple trips that I hadn't used from OVR. And I just said I needed to go there, it was a field trip. It definitely enhanced my education
Jacobson
What was that system at OVR? Did you--
Saviola
You get x amount of trips for school based on how many classes you have. If you didn't use them, you could use them for other school related things. So I said it was a field trip. In a sense it was, a great education and learning experience for me.
Jacobson
Then what happened?
Saviola
So, for the next night we were all separated and by the end of the next day, we were all back to our regular area. The other thing I remember is when they were going to be closing the young adult ward because they felt that the hospital administration felt that we were getting too militant--that we had gotten too many privileges and too many things--we had a demonstration to take over the main lobby of the hospital and DIA came in with us. And we took over the whole administration suite, and we blocked the entrance and we had the state senator coming in and all that. And we won the that fight, too. We had taken over the whole lobby, wouldn't let people in. You were there, I think.
Jacobson
Yes. You won the fight against OVR?
Saviola
Yes. OVR did not cut back school programs that year. We were able to go to college in the summer in graduate school and graduate school as well .
Jacobson
What were you thinking at this time?
Saviola
How powerful we were. It was the first recognition I had that we could be powerful as a force. The fact that--. Look, OVR was one thing, but the fact that my home had been protected and we had been listened to in this institution was incredible.
Jacobson
Do you remember what year that happened?
Saviola
It had to be '70, or '71. It had to be '70 or '71.
Jacobson
Okay. You were there during grad school?
Saviola
Yes.
Jacobson
What was grad school like?
He was a sheer administrator. The only thing that happened with him that was helpful was his--.
Jacobson
Who?
Saviola
You asked--
Jacobson
I said "grad school."
Saviola
Oh, grad school, I thought you said Grascow because he was the administrator. Yes, I was there--.
Jacobson
Grascow was--
Saviola
--the administrator. And one of the reasons we were able to get to him was we become friends with his niece who was doing a summer internship there.
Jacobson
At Goldwater?
Saviola
Yes, but I did graduate school there as well, which was actually much easier.
Jacobson
What was Grascow's first name?
Saviola
I don't remember. His niece's name was Marlene.
Jacobson
Was he a doctor?
Saviola
No, I think he was a business type person.
Jacobson
Okay. Anyway, could we go on?
Saviola
Yes. For about ten more minutes, is that okay?
Jacobson
Yes. Is there anything else about LIU?
Saviola
No, no.
The ordeal of graduate school, 1970
JacobsonYou said you went to NYU [New York University]?
Saviola
Well, NYU was interesting. I decided that I wanted to be a rehab counselor because I wanted to work with people with disabilities. And I worked very hard to get OVR to sponsor this, but I really fought hard.
Jacobson
Why did they not want to?
Because at that time graduate school was something they didn't readily sponsor. You were supposed to be able to do something after you had your bachelor's degree.
Jacobson
What did you major in at LIU?
Saviola
Psych. So, I wanted to go to NYU, I had always wanted to go to NYU, I don't know why. So I applied for admission into the program, I completed the application. And I was very up-front about my disability. I went for the interview, and the building where the program was housed was off-campus. NYU had all these buildings all through the village that were not necessarily on the main campus. And the building that I would have classes in was called the Barney Building. And it was on Stuyvesant and Ninth Street.
So I went there, and we pulled up, and there were steps going into the building. So I said to the driver, "There must be an accessible entrance around the corner--maybe on the other side." He went and comes back and said there's more steps! So I said, "this must be a mistake." He said, "Well, who are you supposed to see?" So I gave him the name, the woman's name was Dr. Patricia Livingston, she was the chair of the department. She came into the van, "Oh, I am so sorry! I didn't know you would have trouble with the steps!" I said, "But I told you I was in a wheelchair." She said, "Yes, yes, yes, but we've had other students in wheelchairs, we had one last year as a matter of fact in a wheelchair." I said, "Well, how did she manage?" She said, "She would get out of the chair and we would carry the chair up and then she would walk up the steps." I said, "I can't do that." [laughter] So she said, "I'm so embarrassed, da, da, da, da, da."
Anyway, so she conducted the interview there with the proviso that if I got accepted, they would make it accessible. So this was in the spring of '70. [interruption] There was this whole thing back forth about NYU and the city, about getting a waiver to put the ramp on, they wanted to put a wheelchair lift, but they didn't think it would be safe from vandalism because of the area. They wanted to put a concrete ramp but they couldn't get permission from the city because it would extend into the public sidewalk. So what they come up with is a wooden ramp.
The first day I went to school, graduate school, the driver got out and he had to go in and tell the doorman that I was there. Then maintenance man would come out and assemble the three platforms of the ramp. At the time, motorized wheelchairs were not very powerful, and the wheelchair wasn't powerful enough to go up the ramp, because it was steep, with just the driver. But maintenance had been told that they couldn't touch the wheelchair because of liability issues. And we were told, that my driver, couldn't touch the ramp because of liability issues.
So what he had to do was go in the classroom, ask one of my fellow students--who I had never met--to come out and help me. And this would happen every time I would go in and leave the building. That lasted a few weeks until people got to know each other. Then everybody just kind of helped out. Students got the ramp, maintenance would push me up. Anyway, but permanent ramp was never built until after I graduated. It took them that long, it was a two year graduate program.
Jacobson
Was there a disabled students program?
No, no, no.
Jacobson
Not at that time, that was '70, when you--
Saviola
Yes, thirty one years ago.
Jacobson
That's the way you made it through grad school?
Saviola
Yes, yes.
Jacobson
Did you ever try to argue it?
Saviola
I tried arguing, we threatened litigation. But I was always promised next semester, next semester. And they literally started building it after I graduated. Again, at that time it was the only way of my of going to graduate school. I had a way of getting in and out of the building in getting to classes. My conscience, at the point I wasn't at the stage of being fully comfortable fighting for my own rights. I don't know what word do I want to use, consciousness, or whatever--where I would have challenged why isn't this happening faster? I had a way to get in.
Moves from Goldwater Memorial Hospital, 1973
JacobsonYes. When did you decide to move?
Saviola
I decided to move when I was finishing up at LIU. And at that time I was involved with Bruce, the man who went to LIU from Goldwater and who moved out of Goldwater first. And he moved into the Towers, which is the housing across the street from Long Island University. That's why I moved in, it was accessible and I wanted to be near Bruce.
Jacobson
Did he have polio?
Saviola
Yes, yes. He had a very similar experience as me, being at home and not being able to handle it at home, and coming back to Goldwater.
Jacobson
Okay. Now, what happened? How did you get out?
Saviola
Well, it took me, I would guess about a year in and a half or two. I didn't want to get out until after I graduated. I wanted to go to graduate school first, because I just thought it would be too much getting used to living on my own and completing school at the same time. So, I graduated in May of, I guess, '72, and I started working at Goldwater as a rehab counselor in July of that year. It took me until January of the following year, '73, to get my own apartment.
Jacobson
How did it happen?
I knew I wanted to live there, because Bruce lived in the complex. I knew it was accessible, and I knew I'd like the apartment because I'd been to Judy's apartment. So, we kept calling them and calling them. There was a great social worker at Goldwater who really helped me.
Jacobson
What was that person's name?
Saviola
Beverly Diamond.
Jacobson
Okay.
Saviola
I need to stop now.
Jacobson
Okay.
II. Independent Living, Disability Politics, CIDNY, and ICS
Consciousness of rights and options, limits of life at Goldwater Memorial Hospital
Is there anything you want to add about what we talked about last time?
Saviola
I think I want to talk a little bit about what happened in Goldwater and at LIU in terms of it developing my consciousness as a person with a disability. You know, when I came back to Goldwater and they'd created this special unit, I had, for the first time, a peer group at Goldwater rather than one or two other people. But like a whole, maybe ten or fifteen people, who had similar aspirations who were beginning to become comfortable with our bodies Our consciousness was being raised about what our options and rights were. At the same time--.
Jacobson
Because of?
Saviola
I think many things. One, to strengthen the peer group, and having some small successes within the institution. I think the times--. It was the mid and late--it was the late sixties, and it was going on for all people at that time. And also, the militar--. You know, being militant on campus in terms of disability rights. I think all those factors kind of combine to help start giving me an identity as an activist, as someone who is powerful, as someone with others who could effectuate change. As opposed to being lucky enough, or entitled enough to get a change.
So I think at that point my whole thinking about what it was like and all, became very different. Who I was became identified. "I am a person with a disability," rather than, you know, "I'm not--." So that all came to help build my consciousness. Before, I never incorporated into my persona that I am a person with disability. The disability was something that happened to me, within the--even though I now let it define me, in part, it was the first time I didn't deny it as part of me, or pretend it wasn't there.
Jacobson
I see.
I think that was something significant. I also think that that's the time when I was leaving Goldwater, when I was trying to get into my own apartment, live independently, start a job, and begin my life in the community as an independent person and--[tape interruption] So, that all became part of it.
And a thought that occurred to me when I was thinking about our interview, something that always floored me was I remember at the time when I was ready to go to school, when I started to go to college and going out to school rather than using the telecommunication device. And when I was moving into my own apartment, people both in Goldwater--staff, some of the other residents, a lot of family and a lot of friends and acquaintances--all kept telling me how brave I was to be leaving and going out on my own. The thing was that I wasn't--scared--and the thing that floored me was, was that it was much scarier for me thinking about remaining the rest of my life in Goldwater than leaving the institution and living on my own. That to me, was the scary thing. Even though it was scary in the sense that it was something new and everything, it was terrifying for me to think of spending the rest of my life in Goldwater. People couldn't understand that.
Jacobson
Marilyn, when did it start to become scary? Because when you decided to live at Goldwater, it was where you wanted to be.
Saviola
I think it started to become scary when I realized I could do things I wanted to. That living in an accessible environment was not enough knowing that I could get an education, that I could potentially work, that I could have relationships and friends. And that I could say when I wanted what done.
Jacobson
Okay.
Saviola
You know, so--. You can decide when you want to get up, when you want to go to bed, what you want to eat and when you want to eat and will provide you with your personal care.
Jacobson
And you couldn't do that as a patient at Goldwater.
Saviola
No, not at Goldwater.
Jacobson
--as a resident?
Saviola
No. I mean, I could have only worked for a short period of time, I couldn't have earned a living, you know, a salary and stayed there. Getting back and forth, when I didn't have OVR to pay was an issue.
Jacobson
What about your relationship with your boyfriend. How was that seen by the staff?
Saviola
Well, most of the time when I was in Goldwater, the two people I was involved with, Bruce and then Roberto, a couple of other people--. I think they, you know--. Two of them, because of the severity of our disability, it wasn't a physical relationship. And then I had a couple other people who we would fool around with, and we had special areas in the hospital where we could go, you know, to have sex. And everyone knew it,
Jacobson
Everyone knew--.
Saviola
All of us who were going there to use it knew it.
Jacobson
What about the staff?
Saviola
Some of them knew. The administration didn't know. I mean, we had two areas in particular. One was the back area of one of the porches, so it was fine in the summer, but you couldn't see in. It got to the point where we would have to book time. Okay, well it's Sunday, you can have the three to four, and in the summer it was very funny. So everybody knew where you were going, what you had done, and whatever, and when your schedule was. And then we had keys to a couple of the offices. When there was more inclement weather, we would go inside. And, I don't think they knew about the keys to the office.
Everybody kind of knew about the C-11 porch, and that's what we were doing in our own time, one of the women fell out of the wheelchair, and then we had a big problem getting staff to help get her back in. Well, how did you fall? [laughter] So, I mean there were problems. But, I mean, you couldn't just decide to close your curtain and have someone--go to bed with someone right there. You had to be discreet. You have to comply with the schedule. Doesn't say much for spontaneity.
Jacobson
Did you get any type of sex education?
Saviola
No, no. Just what you got from each other.
Jacobson
Okay.
Saviola
And you were a great teacher.
Jacobson
Was?!
Saviola
[laughter]
Jacobson
Is there anything else?
Saviola
No, it was just that--. I think that was really the most defining time for me as an activist.
Mayor's Office of the Handicapped, 1971
JacobsonYou were involved in DIA, and we talked it about it last time--do you recollect if there was interaction between DIA and the Mayor's Office?
Yes, at that time, yes. At the initial time, DIA had been--I guess a relatively new organization--when Eunice Fiorito was appointed director of that office. And Eunice was an activist, and very involved in the disability rights movement in New York.
Jacobson
How did that office get started?
Saviola
It started under [Mayor John V.] Lindsay, if I remember correctly.
Jacobson
Okay.
Saviola
And it started--I'm not sure why, how or why. We were kind of all shocked that it came about. I remember that. And I remember thinking, "Now we've got it made, we're never going to have a problem again within the city." [laughter] And it actually was very good when Eunice was there.
Jacobson
It was 1971?
Saviola
Right. I think so, yes. So, she was great. I mean, she would--we would know about things that were going on before they happened, so that we would know where to apply pressure, what to do. And it worked very well. Unfortunately, most of the directors since Eunice have not been advocates in any way, shape, or form.
Jacobson
Is it still in operation?
Saviola
At the present time, under this administration, the director is an able-bodied woman who has no people working with her who are disabled that we know of, or maybe a few, who are totally unresponsive to the community.
Jacobson
What was the purpose of that office?
Saviola
It was started at first to advise the mayor and other city agencies on issues that were going on in the city--decisions, regulations, programs, services that would affect people with disabilities so that things could be that would include people with disabilities into the activities of the city. It was also supposed to do some stuff in terms of--it ran a housing information bank, was supposed to help with housing placement, plus it was supposed to do information and referral, and some constituent services. But it spun all the way from that. God only knows what it does now.
Jacobson
You doubt now it does--
Saviola
Yes, it does nothing. [laughter]
Jacobson
Who is the director?
Saviola
Kathryn Paradiso, I think, or something like that. And she's an able bodied woman who was a nurse. Prior to her was Mark Leeds, and I don't know if you know Mark?
Jacobson
No.
--who was not much better. And he had been director for a while, and then when Ann Emerman came in, she took over. She .
Jacobson
Ann Emerman?
Saviola
Yes, she used to be--did you know Ann? She was an activist from the community. Before her was Carol Roberson.
Jacobson
No.
Saviola
She's a woman with a disability who was director--it was then called MOH, Mayor's Office of the Handicapped. When [David] Dinkins became mayor, Ann Emerman was the director and it became the Mayor's Office of People with Disabilities [MOPD]. And it took on a huge responsibility. We were in the process of trying to get legislation that would amend the New York City building codes. This was called Local Law 58, was passed. New York City building code demanded accessibility in all new construction. And, if there was significant renovation, it had to be accessible. So the building code was stronger than the federal standards.
So, it was the Mayor's Office, the MOPD's job in part to oversee any requests for a waiver to the buildings code to see if it really needed to be granted. And Carol Roberson had a lot to do with making sure that the Department of Building complied with the law and only gave waivers when they were absolutely necessary. She was the director, previous to that was Mark Leeds. And they both had a lot to do in getting Local Law 58 passed. Because when I look back on it, over the last three or four administrations, that's the only significant thing that I can point to that that office did--is the passage of Local Law 58.
Jacobson
And you feel that when Eunice was director it was more active?
Saviola
Yes, I think it was a better administration. I think that that was the most powerful time of the office.
Jacobson
What were some of the things that she was able to do?
Saviola
Well, one of the things, if I remember correctly, was that's when the oil embargo was on, and people with disabilities needed to get gasoline when they needed it because there was no public transportation that was accessible. When they were rationing gas, you could only get gas every other day--depending if you had an even or odd last number on your license plate. We were able to work with her, so that people were exempt who were disabled. So you could get gas, and also ambulettes [accessible transport vans]--because we were concerned that so many people with disabilities require ambulettes for medical services and for educational and vocational training programs. So that they needed access to gas all the time, so her office helped in doing that.
Involvement with Disabled In Action
JacobsonWhat about DIA, were you always involved with DIA?
Saviola
To different extents, in different times. At one point I was president, you know.
Jacobson
When were you president?
Saviola
In the eighties, in the late seventies or early eighties, I really don't remember. I think it was the late seventies, middle-late seventies.
Jacobson
I never knew that. What was it like at that time?
Saviola
It had a lot of people who were really activists who were involved in a lot of issues and it also broadened the thing for civil rights, not just to include disability rights but other things. Also, it was something with gay and lesbian groups, sometimes we'd coalesce, and we worked with them. It was right after Angela had been president, that I became president--Angela Thompson.
Jacobson
Really? I thought Angela was president early on.
Saviola
Well, it was something like that. I was right around her and Denise [McQuade], I think I came right after Denise. Between--I think the three of us were in some sequence, but I don't remember the exact sequence.
Jacobson
I remember I was still living in New York when Angela died.
Saviola
Yes. By the way, her son and husband came to visit me last year.
Jacobson
Really!
Saviola
Yes, I'll tell about that after.
Jacobson
Okay. So, who were some of the activists at that point?
Saviola
Kip Watson. Remember Wiggy? Yavina?
Jacobson
I remember the name.
Saviola
She was an activist. Emily? I forgot Emily's last name, Kip's wife--Emily. Carolyn Bethka. Carr Massi, Anna Fay, Phyllis Rubenfeld, Michael and Frieda [Zames].
Jacobson
Michael--.
Saviola
--Imperiali, Michael Dickman, Howard Silverman, Jerry and Ellen Nuzzi. It was Ellen Kaufman then.
Jacobson
At one point DIA tried to have chapters in the boroughs, and I heard that it was not that successful.
It never went, but there were other chapters. One in [New] Jersey, and one still in Rochester.
Jacobson
Really?
Saviola
Syracuse, sorry, Syracuse, that is still active. A woman by the name of Sally Johnston is the head of the DIA group there. And then they have a group in Jersey. Do you remember Ina [White?] and Sandy Pinkerton?
Jacobson
I remember Sandy.
Saviola
And Albert, I forgot Albert's last name.
Jacobson
What ever happened to Sandy?
Saviola
Sandy Pinkerton worked for the state education department for a couple years. And then developed all these medical problems with pain and stuff so she stopped working.
Jacobson
In New Jersey?
Saviola
Yes, so she hasn't worked in, I would say, fifteen or twenty years easy. I actually ran into her at the disability expo this year. She got her PhD, and she does some consulting.
Jacobson
Wow! I would love to see her.
Saviola
We should have called her. She would have come in because she has a van.
Jacobson
Is the DIA still operating?
Saviola
Yes, yes. And their biggest problem has been getting new young blood in. The guy who's president right now, a guy by the name of Anthony Trocchia, who's in, I think, his mid- to late thirties. So they finally got a few younger people. Nadina is very involved, she's involved in Adaptive New York.
Jacobson
Nadina?
Saviola
Nadina LaSpina, yes.
Jacobson
What's their focus now?
Saviola
Okay, it's what? Their focus now is--I don't know, I think there's some Olmstead stuff and de-institutionalization stuff. They're doing some lawsuits. One with, I think, the Dwayne Reeds [chain pharmacies] or the Rite Aids, one of those stores, because they put so much stock in the aisles, even though the stores are accessible you can't get through if you use a wheelchair or scooter. We worked together on some issues with the subway and transit access. But, you remember DIA and EPVA [East Paralyzed Veterans Association] were the entities that sued New York City to get the accessible buses.
Jacobson
Yes, yes. What--. Do you know anything about ACCD?
Not--. I remember when we formed it. I remember when we were in Washington in that room in the hotel.
Jacobson
American Coalition--
Saviola
--of Citizens with Disabilities.
Jacobson
Yes.
Saviola
When Eunice was there it was great. And then Frank Bowe and everything--. Phyllis took over and there was all kinds of political stuff. Remember when Phyllis Rubenfeld took over?
Jacobson
Yes.
Saviola
And then it kind of just crumbled.
Move to independent living
JacobsonOkay. I want to go back to when you moved out of Goldwater, how did that happen?
Saviola
Well, it really was a whole team effort, actually. I worked with an OT, a social worker, a rehab counselor, and Dr. Alba to pull everything together. People came out, we checked the apartment, they got our home care stuff in place, they let me work at Goldwater for six months and keep my salary, so I had money to buy furniture and pay security and rent.
Jacobson
Denise McQuade said you took over Judy's apartment.
Saviola
No, no, no. Judy was on a lower floor, I live on the 11th floor. We both lived there at the same time.
Jacobson
How did you manage finding attendants?
Saviola
Well, it was crazy at first, it was an absolute disaster.
Jacobson
Tell me.
Saviola
It was, at that time, the way they paid for it was they gave a two-part check to me and whoever was the attendant. Then I would have to cash the checks and pay the person. And the checks never came on time, they would be weeks and weeks late.
Jacobson
Were you under Medicaid?
Saviola
It was a Medicaid program under DAB, Disabled Aged and Blind services, which was part of public assistance . This was pre SSI [Suplemental Security Income]. I received survivors benefits from my father's Social Security until I started working.
Okay.
Saviola
So that's how people were paid, that's independent contractors.
Jacobson
And this was seventy three--
Saviola
--three, until about '80, until it kicked over to the current system of the city contracting with not-for-profit organization to provide personal care services.
Jacobson
When did SSI--
Saviola
--SSI must have come in the mid seventies, in the mid to late seventies.
Jacobson
I feel like it was either seventy-three or four.
Saviola
It could have been '74, but when I started, this was all pre SSI. So, I had this employment agency who would send people, which turned out to be a disaster. The one thing I had done, is I had gotten to work for me a woman who was a nurse's aide at Goldwater, who had left Goldwater. So she was working for me. Remember Mary?
Jacobson
Mary.
Saviola
Yes, so Mary--. Fortunately for me, Mary was always able to cover for me when the workers from the agency didn't show up.
Jacobson
Did you need full-time--
Saviola
--yes, but at the time they weren't paying for two split shifts. So they would only pay for twenty-four hour care (sleep-in), which isn't fair. A person gets paid for like fourteen, fifteen, hours--as opposed to twenty-four hours--but has to work the twenty-four. Then, after about a year or so I found Muriel. Do you remember Muriel?
Jacobson
Yes.
Saviola
And I got her through an employment agency. And what she did, is she moved in, actually. So I gave her rent plus the salary she was getting. So, she stayed with me for twenty-one years until she died.
Jacobson
She died?
Saviola
She died in '95. She had cancer. She was almost seventy seven years old at that point. But she was still working nights, because it wasn't that strenuous for her. We became so close that we were family. It was, you know--. Until I got a secure thing, it was like days that no one would show up and I'd have to call Mary and Mary would come. Until Muriel moved in, and when Muriel came in things stabilized. What I would also do, since I had a large apartment and I had a van to get back and forth to work, I'd offer free rent in exchange for driving. So I have had some very good drivers and some very sick drivers, and some dishonest drivers.
Jacobson
Did they pay minimum wage?
At that time?
Jacobson
Yes.
Saviola
I don't remember what it was, because it wasn't consistent. We never did time sheets, all I knew is that you got x amount of money per week and you had to use it to pay for your personal care needs. But I don't remember what the minimum wage was, but I think they barely did.
Jacobson
You said that you called up an agency, what agency?
Saviola
It was an unemployment agency that did domestics. So, I figured that if they could do babysitting and domestic placements they may know someone who could do the job I needed. And I don't remember how I got the name, who gave me the name.
Jacobson
What was the name?
Saviola
I don't remember.
Jacobson
Okay. So that was in the early seventies?
Saviola
Yes, '73, '74.
Jacobson
Were you the only one you knew at the time that had to have twenty-four hour--
Saviola
I was the only one, I think, I knew at the time who had to have paid for twenty-four hours, as opposed to someone like Angie, who needed it but whose mom was there for the other time, and grandmother. And I got people like Bruce who needed it, but instead of using the money to have someone, at night he would pay roommates to do it. So I knew people who needed it but didn't work it through a paid PA [personal assistant]. They used informal supports or family.
Center for the Independence of the Disabled of New York, 1978-79
JacobsonOkay. Let's talk about CIDNY [Center for the Independence of the Disabled of New York]. When and how did that come into being?
Saviola
CIDNY. How I got there or how CIDNY developed?
Jacobson
How CIDNY first developed.
Saviola
I guess it was in 1978 and '79 when, after the CIL in Berkeley was up and running and ready to be replicated our local VR [vocational rehabilitation] agency under the Rehab Act, under Title VII, of the '73 Rehab Act, were going to start ILCs [independent living centers]. And in New York State, they decided to fund CIDNY. It was the first, actually, to fund it through I&D money, innovation and development money. At the time, Fred Francis worked for VESID, which was then OVR. So, he knew about the
Jacobson
Why did they call it VESID?
Saviola
Vocational, Educational Services for Individuals with Disabilities.
Jacobson
That's a mouthful. [laughter]
Saviola
Definitely. But, so--
Jacobson
Let me change the tape.
Okay, now Fred Francis--.
Saviola
He was a friend of Pat Figueroa's, and they both went to Brooklyn College. So, when he knew that VESID was getting this RFP [request for proposal] together, he talked to Pat, "Okay, let's do this." And they went to NPF, National Paraplegic Foundation, or whatever it was called--you know which one I mean.
Jacobson
Yes.
Saviola
And they had to be the not-for-profit that sponsored it. Okay, so they did an RFP and CIDNY was given the grant. Anne Marie Tully worked there and then Bobbi [Linn] at first, and at first it was supposed to do home attendant referral, it had one specific task.
Jacobson
Who was the head of it?
Saviola
Pat Figueroa.
Jacobson
Okay.
Saviola
Yes, he was the head until he left in '83, and that's when I came in.
Jacobson
Now before CIDNY got started, what had you heard about CIL?
Saviola
That there was this program in California that was having people with disabilities control all the services they need so that people can live independently. Without having professionals administer the services.
Jacobson
So, was CIDNY trying to follow in their footsteps?
Saviola
Unfortunately, no.
Jacobson
Why not?
Saviola
Because I think that when CIDNY started, based on the funding source, they had so little money they could only do one or two things. So they identified home attendant
Jacobson
Did you know anything about the board of CIDNY?
Saviola
Not at that time, no.
Jacobson
Okay. You got money for the Brooklyn Center from the state?
Saviola
We didn't. CIDNY did it as an entity. But it was only at one time when some of the state funds were cut, CIDNY helped fund the Brooklyn Center for a very short period until the funding was restored.
From empowerment-based to crisis intervention
JacobsonSo, I'm thinking that CIDNY expanded its services.
Saviola
CIDNY expanded, you know, through the early eighties, and became a full service ILC. When I came in 1983, what I had done, is that a lot of the services were done by the phone. Very few were done in person. And I kind of said, "No, you've got to bring people in, you've got to do this ."
And I think that every ILC kind of develops an expertise or a niche, and I think that what developed while I was at CIDNY and under my leadership, was the expertise in community based home care services and health care. Which is something that ILCs hadn't touched. You know, inroads into the health care system.
We were so weary of the medical model and didn't want to be identified with it, that we didn't really start addressing access issues in health care until the mid or late eighties, because we didn't want that identification. It was much purer to fight for accessible transit or building codes than to talk about "Hey, how can woman in a wheelchair get a mammogram?" It became a different type of issue.
Jacobson
What was the population?
Saviola
The initial population was people with mobility and physical disabilities.
Jacobson
And it was cross-cultural?
Cross-cultural and cross-disability, we had people who--. Some people who were deaf, some people who were visually impaired, but the vast majority were people with physical disabilities.
Jacobson
Okay.
Saviola
--which changed drastically in the last eight to ten years. The population--we had more and more hearing impaired people, more and more people with mental health issues, and DD [developmentally disabled] issues, and learning disabilities, attention deficit, all kinds of mixed disabilities. And fewer and fewer people with physical disabilities.
And the people we had seen initially were people who came for a concrete service, "I need help getting my SSI, I need help getting an apartment, I need help winning a hearing." As opposed to people who then came in because they were homeless and had no place to live, or had no money, or were living in a four flight inaccessible apartment and their spouse or lover had left them. So, the Center became less about empowerment and more about crisis intervention, just because that's what was coming in, and that's what you had to respond to. And when we talk--.
This was not only a problem of New York, when we talked to directors all over the country, everyone was seeing the same thing. The population had changed, the needs had changed, it became more of a drop-in center, unfortunately.
Inability to sustain coalitions
JacobsonHow were you received by the disabled groups that already existed?
Saviola
When CIDNY came in?
Jacobson
Yes.
Saviola
Well, before I got there, we were all really excited about it--me included. Because finally we were going to have an ILC who was going to be responsive to community needs. But the centers were never supported in that way. In New York State, the centers had two very strong mandates, legislative mandates, to do direct services and systems advocacy. But they never funded you enough to do the systems advocacy. The vast majority of resources were directed into direct services.
So, I think CIDNY was very actively involved when we took over the transit authority, and so was the Brooklyn Center. They became the operational hubs, the people who organized it did the clerical support, the phones, the mailing, and stuff like that. But it wasn't sustained much after that. It was more episodic and need driven. So there wasn't a consistent coalition that the centers controlled and gave resources to. They had the resources that were able to support the grassroots groups like DIA. Unfortunately, that never came about.
What about the groups that weren't grassroots, like United Cerebral Palsy and the Muscular Dystrophy Association?
Saviola
I think they saw us as, those groups, "People with disabilities, we'll let them survive." But they didn't give us the recognition of another professional organization, even though we were providing the same types of services they were. One of the things that CIDNY was most successful at doing when I was there was forming coalitions based on issues.
For instance, in the late eighties and early nineties, into the mid-nineties, actually, New York State has been seen as tremendously overspending on home care services. Many times the governor would propose cutbacks, that would cut the hours of home care people needed. So that they were going to cut down and cap the hours of services of people with disabilities. So you couldn't get continuous twelve hour or twenty-four hour care. And we formed coalitions between the activists, family members, providers, legal service lawyers, and labor unions to fight this, and effectively stopped it. I think that was one of the strongest things I was able to do when I was at CIDNY, was trying to form these coalitions.
But the disability rights movement in New York--I don't know how it is in the rest of the country--cannot sustain itself as an entity on a coalition basis. It can form, and react, and handle an issue like the oil embargo, or the gas prices, accessible transit, the cutbacks in home care. But you can't say that the ABC coalition has an office, regular members, a board of directors, and is in place to respond immediately.
Jacobson
The ABC, Architectural Barriers Committee?
Saviola
Yes, like that, you remember we had that organization.
Jacobson
Why can't disability rights groups do that?
Saviola
One reason is it's a very small group of people doing it. And anyone in the coalition who is not a member of that small group is already into ten other things and other groups they represent that may not be disability related. So you don't have the funding. There's no funding to keep that going. If you were able to fund an office, clerical support, and a program administrator, you may be able to do it. But you can't just, you know, keep it going. Now the ILCs, for the first time, this year, in New York State, tacked on monies to hire systems advocates, so let's see what happens with that.
Jacobson
To do what?
Saviola
To hire a systems advocate at each center.
Jacobson
Which is supposed to do--?
Saviola
Systems advocacy, systems change.
Jacobson
Okay. In the legal area?
In regulation, like, for example, Olmstead implementation. So you would have someone there whose job it was to work with New York city and state building codes. Now they're trying to water them down, and go to a national standard which is less than what the state has. Because the state requires 100 percent accessibility and adaptability in new construction. The federal code, or whatever it is, only requires 2 percent, so they're trying to get that passed. So these systems advocates could devote almost all these times to these issues. They don't have to do individual work with people.
Jacobson
So, before this, whenever something like that came up, it would be that you had to drop what you were doing?
Saviola
Yes.
Jacobson
And work on the crisis?
Saviola
Right.
Jacobson
It sounded like the ILCs operated in crisis mode most of the time.
Saviola
Yes, definitely, definitely.
Jacobson
You talked about the Brooklyn ILC, what about the Bronx?
Saviola
The Bronx? CIDNY was the actual sponsor, which had all been kind of done when I came in, and when I came in, Bobbi was transitioning out and going into the ILC. So we just kind of--our board was their board until they got set up. I was executive director of both, before Bobbi took over for us.
Jacobson
They were supposed to do what you did?
Saviola
Yes, originally they had thought about only doing different things. Like they were going to have a kitchen in a mock apartment where they would train people that had to live in the community. But that didn't work, the state said, "No, you have to provide a full range of IL services."
Jacobson
In CIDNY, for example, were there any training programs? Like at CIL in California there was the Independent Living Project, and what we did there was take people who were living in institutions and board and care facilities, and bring them in and teach them the whole gamut of how to live independently.
Saviola
We've always thought that one of the things I wanted to do at CIDNY is--we have a really strong consumer directed home care program in New York--to teach consumers how to hire, fire, and manage, and recruit their own workers. We were never able to get funding for it. It's one of the things we're going to be doing here.
Jacobson
Why do you think that was the problem?
Saviola
Because everything was reactive rather than proactive. You couldn't get funding. Most of the ILCs were not really good at getting funding for other projects. And the core funding was so bad that you didn't have the resources to get a developer or someone, or
Connection with Ed Roberts
JacobsonAt that time, Judy Heumann left for California. Did she from time to time come back and advise?
Saviola
Judy, no.
Jacobson
There was no connection?
Saviola
Well, I would guess in about 1985--maybe mid-eighties--I developed a relationship with Ed Roberts. And Ed would come in and do some stuff periodically.
Jacobson
What did he do?
Saviola
He put us on to some developers who did help us get a Robert Wood Johnson grant. We spoke at a couple of conferences together. I did some visits with him to foundations for WID. We had talked about setting up an east coast WID, where it would operate out of CIDNY. But we just could never get it off the ground. Ed was spread too thin, and so was I, to do it.
Executive Director of Services at CIDNY, 1983-1998
JacobsonWhen did you leave CIDNY?
Saviola
I left--okay, this is very interesting. I actually resigned from CIDNY in September of '98, and I started working January 4th of '99, here. We didn't have an office.
Jacobson
At the time you left, how big was your staff?
Saviola
Without the home attendant program, the personal assistant program, we had about--oh god, me, Glenda, Sylvia, Nat, Anthony, Gayle, Don, Matt, Phillip, Rhonda--about fourteen or fifteen people.
Jacobson
At that time, what were the services being--.
Saviola
We had a benefits advocate who did advocacy, we'd help with social security and Medicaid, Medicare, public assistance. We had a housing person, we had a deaf
Jacobson
What was the client assistance program?
Saviola
It was a program that was part of--what do you call it--a protection and advocacy program--where they would mediate and advocate between clients and applicants to VESID, and with the state vocational rehab agencies.
Jacobson
So, if they had problems--
Saviola
Right, if you couldn't get what you wanted, you were denied something or if you couldn't get along with your counselor. You know, trying to get a grad degree and they said they didn't do it, we could represent you through a fair hearing.
We also had several programs up where we were doing a thing on training different women with different types of disability to do breast self-exams. We developed a program with people who were visually impaired, using tactile boobs with little bumps, and you could train people how to do it on themselves. So we did it with deaf and hard of hearing people. We did a--running a program on the local community health center where we would do the access, bringing people in and knowing what they needed for disability related issues. So we were running that program as well. We were surveying sites for accessible mammography. So we were doing a lot on health care. We were also writing curriculums for working with--trying to work with hospitals to teach them how to work with people with disabilities when they're admitted. So we did a lot of stuff like that.
Jacobson
Did you get any help from any other professionals?
Saviola
Yes, we had excellent--. We had a professional advisory committee, it was quite awesome. It was set up for the thing. We got funded through United Hospital Fund to do that program. We had someone sitting on the--. We had--Debbie [Debra] Shabas was the neurologist who founded the IWD and who is now at Premier [The Women's Center at Premier HealthCare].
Jacobson
IWD?
Saviola
It's the Initiative for Women with Disabilities. It's now--. She's now at Premier. And Susan Wol, who--the gynecologist who worked there, who worked with us. She was--already had a woman, another doctor, who was a physiatrist with a disability who worked with kids. We had people who worked for the health and hospital--
Jacobson
What was her name?
Saviola
It'll come to me, she was at Rusk [Institute]. I can see her, it'll take me a minute but I'll think of her name. It'll come, it'll come--.
Jacobson
What about any input from UCP?
Saviola
UCP was involved in some of the housing coalitions we did.
So, you left and--
Saviola
--I left, I formally ended my employment in December of '98, but I stayed in a physical space at CIDNY until April of '99, because our office space wasn't ready. I did mostly ICS work, but I ran the TBI program out of CIDNY in exchange for rent.
Jacobson
TBI?
Saviola
Yes, Traumatic Brain Injury program. I had gotten quite an expertise in working, in running groups, and we became a waiver provider. So I continued to do that while I was there.
Jacobson
What did you actually do? You ran groups for-?
Saviola
People who survived [brain injury]--I ran support and therapy counseling groups, which was very interesting. Because many of the people, particularly in our group, were people of very high functioning level, but gd severe memory deficits. And like for the first, I guess, two months, when everyone wanted to get know each other, every week they would have to tell their stories over again, until they learned each other. To learn and remember, it was very interesting, but it was a good support group.
Start of Independence Care System, 1995-96
JacobsonNow when the Independence Care System came into being--can you describe it?
Saviola
ICS, Independence Care System--it really started, I would guess, in 1996, '95, around there. They got a Robert Wood Johnson grant.
Jacobson
What is a Robert Wood--?
Saviola
--Robert Wood Johnson Foundation gave a wad of money to different groups, and they got interested in disability issues, right? One of the things they did--. They funded the program that we did for influencing systems' change. That's where we worked with a community-based health center to try to make it accessible.
So, Rick Surpin, who was the founder and president of ICS, who I had worked with in many coalitions, came up with the idea of ICS, which would be care, coordination, and management for people with severe physical disabilities--on Medicaid, over twenty-one, living at first, initially, in the Bronx and Manhattan. The purpose would be two-fold. He had found a workers owned cooperative for home health aides, and wanted to find a source of jobs for workers. So that was one thing. The other thing was to help people coordinate care. The fact that people with disabilities-especially in a fee-for-service Medicaid system--did very little, had very little coordination of services. You got personal care, but you may not have medical care.
Jacobson
Where did they have to live independently?
In that community you could live with a family, you could live with a total of twenty-four hour personal assistance service, but you had to live in a non-institutional setting. We worked with several people to help get them out of nursing homes.
Jacobson
Okay. I'm going to put in a new tape.
You were telling me about ICS.
Saviola
So, ICS came about--. The people with disabilities, especially if they had lots of different services, had no coordination or management so that usually you got health care, maybe here, maybe there, very little if any preventative health care. Most people were seen at hospital-based clinics where there wasn't any continuity of care because you would have a resident at that clinic for only six months, who was your doctor, and you rarely saw an attending [physician].
Also, if you had more than one doctor and they didn't talk to each other let alone you, you had problems getting wheelchair repair and proper equipment ordered. Equipment was ordered for people that couldn't use it because no one talked about what their lifestyle was in the community. Since Medicaid was moving to managed care, and eventually long-term managed care, we thought, let us come up with a model of service delivery that could do care management. So it helped foster independence, using as much consumer direction as possible.
So we had care teams, usually consisting of a social worker and a nurse, maybe just two social workers, or eventually maybe just a nurse, depending on a person's needs. And we would be assigned to people, and we would get to know them so that a person could use as much or as little support as--. We had people who were extremely medically fragile, who had huge decubiti, contractions, needed IV medication and antibiotics several times of day, nursing visits, and stuff, who had no equipment, no home care.
So we had to put all that in place. We have other people who work and don't need anything except periodically. If something goes wrong, they know that could call here and we could see that it gets done. "My wheelchair's not working." We have a wheelchair tech who'll go out and fix it. We have other people who have lots of social issues. We have one woman who has MS who has thirteen kids. You know, so she needs lots of support. We have other--younger people who are mothers and are disabled, and are getting very little help dealing with their children. We had one man who was a single father, who's raising his child, who is a brain injury survivor himself, whose kids has ADHD, you know.
Jacobson
AD--
Saviola
ADHD [Attention Deficit Hyperactivity Disorder]. And so we were able to put some home care services, some homemakers services in so that the kid could get the support he needed. You know, the father used to have to get up early in the morning to take the kid to the bus, and then was so exhausted he went back to sleep and until his kid came home, because he was doing everything. You know, so we have lots of people who
We become the payer for Medicaid. We contract out and pay for the home care services, the therapies in the home, the durable medical equipment, the supplies and transportation. You don't pay for the medical services and stuff. People are allowed to bring their own networks in. If you have doctors you like, we'll work with them, if you have a home care worker that you want to work with, we'll work with that agency to work with you. So you have choice.
Jacobson
It sounds like an ideal program.
Saviola
I was, you know, the thing is--. People said, "Well, how can you leave an ILC and come to work for managed care?" And the reason I really did it was that I know it's going to happen, like it or not, so I wanted to have some input in how it would look. And also, I think that the people here are really open minded enough, and astute enough to know that people with disabilities are collaborating. You collaborate with rather than "do for." And they really struggle for that sometimes, but on the whole, you know, the--. Rick is a--I'm sorry, you'll meet Rick tomorrow-
Director of advocacy
Jacobson--Rick is the president, and you are?
Saviola
The director of advocacy.
Jacobson
So, what exactly is your role?
Saviola
Well, I'm responsible for all member orientation. Whenever we get a new member, talking to him or her about the program, explaining to them what goes on, what their rights are, find out if there are any issues that are not being addressed. I do a lot of--if there's a problem or a complaint, I have to solve it, or I refer it and do it through a grievance procedure. And I work with them to try to resolve it, or see it through the process.
Jacobson
And this is a state funded--
Saviola
--Medicaid fund, it's a capitated program through Medicaid funds. But we also have a lot of grant money.
Jacobson
A "capitated"--
Saviola
--In other words, we get x amount of money per person, per month, to provide services for them.
Jacobson
Okay. Is it adequately--
No, but we've gotten more. It's still not what we should get. You know, we're trying to--. We just negotiated a better rate, but it's still not great, but it's going to--. Hopefully, as we show experientially that it costs more, we'll get more.
Jacobson
And you have foundation funding?
Saviola
Yes, Rick has been very good at getting foundation money, grant monies, investment money on top of that.
Jacobson
Okay.
Saviola
And, you know, one of the things that, for me, and I talk to people about this. I've talked to Anna and--. When I was at CIDNY, it was extremely difficult to get consumers to do advocacy, to get involved in the organization, to get involved in working on projects or whatever. And here, there's been a group--. We have about two hundred members right now. And I have a group, it started with one or two, maybe, now about twenty or so or more people who all want to be advocates, who I've gotten to go to meetings, served on different coalitions, come in and do stuff, make phone calls. We had someone meet with our new head of the city council committee on disability. And it's phenomenal, because to me, I don't understand why it would happen here, and not at an ILC. And I don't understand that.
Jacobson
Do you have any thought about that?
Saviola
I thought that maybe it's a--. I'm not sure, maybe because when people came to an ILC they were coming to a person with a disability who was a professional advocate, and that was their job to do advocacy. As opposed to here, our broader job is to care--care management. So maybe it's easier to assume the role of advocacy when you don't have to be an advocate with a--with a professional advocate, for lack of a better term, I don't know.
Jacobson
Well, I would also think that here, at ICS, the needs are addressed on all levels--home care, health care, wheelchair repair, and so they don't have to worry about how are they going to get their needs met to survive.
Saviola
Yes, that makes sense, the other--. I wanted to show you the newsletter. If you look at our newsletter, which is totally a member activity, you'll see a lot of articles which talk a little bit about, you know, "With the help of God," and with this, and a cure that comes with this--and then you see intermingled with this, a story about disability etiquette and how come we don't have curb cuts, or why is it such a problem that doctors don't talk to you, and we need to begin to do this.
So you start seeing the seeds of some real activism starting. It's very interesting, one of the articles one of the people wrote, and she was supposed to be talking about disability rights compared to someone who is "stricken" or is "suffering from." I said, "Hey you've got to--if you're really talking about how people refer to us, you have to look at how you refer to us." And people catching that and being able to grow. So that I look at a newsletter like this, and I see where a group of people are just burgeoning--activism is starting, it's really exciting to watch. You know, we've had a group of people come in who wanted to learn how to deal with elected officials. What do you do when you write
Jacobson
Where are the people coming from?
Saviola
We thought we would get our biggest referrals from the ILC's and that has not happened. We get a majority of people--. We got some from the home care vendor agencies, some from hospitals, and a large number of people from word of mouth. People who know someone who is in the program and stuff like that. And we've done a lot of outreach. You saw the Abled newspaper, I gave you a copy, we advertise in that regularly. And, like, we're going to have this series, a rec series, in the next couple of-.
Jacobson
Who puts out the Abled newspaper?
Saviola
It's an independent newspaper, it's not agency based.
Jacobson
Oh, really.
Saviola
Yes, it's quite a good paper.
Jacobson
And who funds it?
Saviola
I don't know where they got their core funding, but they have a lot of ads now. They get some private money, but I'm not sure where.
Jacobson
Okay, going back, what type of classes, you said that you're having a series?
Saviola
We're having a lecture series. The first three lecture series are going to be--one this month is going to be on disability culture. Nadina, who teaches down at the New School, is going to do that. In August, Frieda's going to come in and give a reading and talk about her book on the disability rights movement.
Jacobson
Frieda Zames?
Saviola
Yes, she published a book called The Disability Rights Movement, Charity to Confrontation, and in September Dr. Debbie Shabas and Susan Wolfe, who's a gynecologist, are going to talk on access to women's health care. We'll use that as a marketing and PR, as well as an information thing for our members.
Jacobson
Marilyn, it seem to me that ICS is getting a real reception from the people in the disability rights community, is that true?
Saviola
I think we were leery. I think my coming here helped, in the sense that, you know, I was here so it must be something. We have several members on our board who are real activists, Anna Fay is on our board, James [Billy] used to be on our board. He was the director of the Harlem Independent Living Center, now works for an RFA under the independent living coordinator. And Susan [Doowau] who works for Gay Men's Health Center, who is a real activist in managed care issues. So, people with disabilities are on our board. So, we have, you know, strong advocates on the board.
Do you have criteria of who can be a client?
Saviola
Yes, there are state mandated criteria, you have to be Medicaid eligible, right now living in the Bronx or Manhattan. We're going to be expanding into Brooklyn next year and then Queens. And you have to score on a screened--high enough needs to be eligible for nursing home care if you didn't get what you needed. So that if you didn't get what you needed in the community, you would score high enough to be placed in a nursing home. And you have to be somewhat self-directing or have someone there who can, you know, help you direct what's going on. We have one woman who has a boa constrictor and two pit bulls.
Jacobson
Okay.
Saviola
It's amazing, the--. Since I work more with the members, you really forget as an activist, what the real issues are for people. We had a meeting a couple weeks ago with Margarita Lopez who is the city council member who chairs the committee on disability, and we were--. Tracy, who is the editor of the paper and one of my advocates, was working on an interview with me and we were talking about issues-
Jacobson
What's Tracy's last name?
Saviola
Mitchell. And we were talking about different issues and Ms. Lopez said to me, "Let me ask you a question, since you work with people directly who I may not hear from, who are non-activists--when I talk to activists in the community they identify one thing as the most important issue, but you talk a lot about housing. If you had to say, for your members, what was the most important issue, what would you say?" I had to say housing. So she said that was very interesting that activists identify it as transportation.
Jacobson
But aren't most of the buses accessible?
Saviola
All the buses, we have 100 percent bus accessibility.
Jacobson
So why is the--
Saviola
You don't have inter-borough transportation regularly, that's subway, basically.
Jacobson
Okay. But the buses also go to the boroughs?
Saviola
Yes, but there's limited city buses that are inter-borough, most of them are contract, and they're not all accessible.
Jacobson
Okay.
Saviola
The bus, the B-51 which connects downtown Brooklyn to City Hall only runs during the week, it doesn't run weekends.
Jacobson
What about employment?
Saviola
Interesting thing, we've had about six or seven people become employed since they've become members.
And what happens once they get employed?
Saviola
Nothing, really, because they still meet the eligibility. With the 16-19 programs, they are on SSI anyway, they could still, with their work-related disability expenses, still qualify for Medicaid.
Jacobson
Tell me what's the "16-19" programs.
Saviola
They're the work incentive programs for SSI.
Jacobson
Okay.
Saviola
Which is a way of letting you keep your Medicaid and still continue to work.
Jacobson
Are they local?
Saviola
No, those are federal programs.
Jacobson
Is that happening in every state?
Saviola
It should be, because it's a federal program, yes.
III. Discussion of ADA, Societal Attitudes, and Disability Culture
Impact of Americans with Disabilities Act
JacobsonWere you active--to go onto another topic--were you active in the ADA [Americans with Disabilities Act] passage?
Saviola
Yes, somewhat. We worked with trying to pass it, a letter writing--that kind of activity.
Jacobson
But--
Saviola
I didn't go to Washington, no.
Jacobson
Has the ADA made a big difference in New York?
Saviola
Yes and no. It's made a difference in that sometimes you can use it to fight for things that you didn't think you could get otherwise. And I think on a very practical level, pre ADA and pre other civil rights laws for the disabled--. One example I always use. Ten, fifteen years ago, if I wanted to go to a movie, the way I would go is find out what movie is playing at the theater I could get into, as opposed to what movie is it that I want to see. Now, it's so much easier, because so many of the theaters are accessible.
Jacobson
Yes
Saviola
With transportation, it's made it much easier for accessible transit. But on employment, I still think it's just barely scratched, you know, scratched the surface.
Jacobson
You said that in the disability rights movement, transportation is the big issue?
Saviola
It's one of the big issues. Some of the--. They've identified it as a city council issue.
Jacobson
What are some of the other issues?
Saviola
We still have problems in New York with curb cuts. Did you--I'm sure you--.
[laughter] Yes, I find that.
Saviola
You can get out one side of the curb and get to the next corner and you can't get down, or there's an inch or two gap or lip on the curb.
Jacobson
Yes, yes.
Saviola
There's a curb on the corner of University Place and 14th Street, which is around the corner from CIDNY. It has a lamppost in the middle of it.
Jacobson
What-
Saviola
--good planning, right!
Jacobson
Yes, great. Marilyn, have things changed for people with disabilities?
Saviola
Oh, yes, most definitely. I mean, it's no longer unusual to see people with disabilities on the street, people in offices, stuff like that. Just, whenever you--wherever you go, you usually see someone else with a disability, people you don't know. Where before, you used to go out, you would never see anybody else. Or, if you did, you would know the person. I think there are more--. Jim Weissman, one of the attorneys who worked for Eastern Paralyzed Veterans Association, who was one of the attorneys who litigated the original suit for accessible transit, said one of the problems for younger people with disabilities is that they take things as givens. Successful transit, integrated schools, and stuff--they don't have a conscience for civil rights because they've never had to fight for things, they've always had it.
Jacobson
And how can they get it?
Saviola
I think they have to get it by being exposed to adults, older people with disabilities. And I think that by publishing stuff as to what our movement was, what it was like before, is important. Very much like the civil rights movement had to give a history to younger people, we have to do it to our people, to our younger people.
Jacobson
What are the things that haven't changed?
Saviola
A lot of the attitudes. You know, we had an incident a couple months ago, two incidents, of--. Two of our members are a couple, both of them with cerebral palsy. The guy, his chair broke down--the two of them are out on the street, they both use motorized chairs--and when he was in the street and his chair broke, his wife had nothing else to do but call 911. The cops came, and their first response was, "Well, why are you out? Why are you on the street? Why do you have to go out?" Then they were going to take them to the hospital, they called an ambulance. And they tried to explain that "We're not sick, why are you taking us to a hospital? We ought to go home." And having to fight for an hour and a half until that got done. You know, why must you go out? If you didn't go out, your chair wouldn't break!
Need for research; rights versus independent living; disability culture
JacobsonWhat are the areas that you feel need research and further resolving?
Saviola
I think, first of all, we need to stop the erosion of the rights we've already had. You know, I think we have to really be very vigilant about that. And I think research-wise, people really need to look at the difference in where we were ten years ago, fifteen years ago, and where we are now, and where we want to be in another ten years. Look at it broadly.
Jacobson
Is there anything you want to add?
Saviola
Not at the moment, but I'll probably tell you something by tomorrow.
Jacobson
Yes, I know. Let me get out my tape recorder and go, no, wait let me get that on tape.
I have one more question. It seems that there's a very defined line between the disability rights movement and the independent living movement.
Saviola
I think it's very defined sometimes but when it's issue driven, where there's an issue it's not that defined. I think that if there is a crisis that everyone has to rally on and get behind, they'll work together and whatever. I think that the line is blurry at times like that, and doesn't exist. I think it just goes--. Again, it's reflective of why we can't keep a sustained coalition or a structure for the disability rights.
Jacobson
People talk now, there are disability studies courses at university, and people are talking about disability culture. What's your view on that? Is there a culture?
Saviola
I think there is. It think there's a disability culture by just a common experience. I think that the disability culture, by the way we call and refer to each other, you know. We use words to describe each other that no one else, that if someone able-bodied would say, we'd be offended. I think that we've gotten some art, some very--. Poetry, plays, dance, whatever. There's really become a body of artistic--paintings, whatever--that respect who people with disabilities are. So I think that's true in that sense. I think that any movement has a history to it. And that translates into a culture, because of common experience and stuff like that.
What comes for me is that when I've been talking to other people with disabilities, and they talk about when they were younger, they didn't want to be around anybody, they weren't like "those people."
Jacobson
Is that a stage of development or is that something that can be resolved?
Saviola
I think many people who acquire a disability as a young adult or something else go through--that phase becomes much more pronounced for them than for someone who grows up with a disability, who's been around other people with disabilities forever. I think a lot of people who are going through their own adjustment process to a new disability don't see it as anything permanent. Or don't want to believe that it's anything
Jacobson
Let me turn the tape over, I've got one more question.
Saviola
Okay.
Disability movement and the hierarchy
I have one more question, because it has come up in other interviews I've been doing. The question is about a disability hierarchy, and some people feel that there is a definite hierarchy.
Saviola
Based on different disabilities?
Jacobson
Yes.
Saviola
I remember when I was in graduate school that was a whole big thing. This guy, Jerome Siller, I think, was a research psychologist at NYU had done these studies where they had people who had physical disabilities, people who are blind, and people who had--I forgot what other--. They asked people who were physically disabled would they rather be physically disabled or blind. And the people who were blind always said blind and the people who were physically disabled always said physically disabled. And they asked you to also rank, of these disabilities, which would you prefer least to have. It's always cosmetic disabilities, like if you had a facial disfigurement or something, that was always high. If you had a speech problem, that was very high. If you had a severe mobility impairment, that was fine, less so if you were blind or deaf, I remember that. I remember reading--there was a whole lot of research on that.
Jacobson
What has been your experience?
Saviola
My experience has been this. Outside of disability, you ready to go to dinner with three or four people who are all disabled, and there is no person who is able bodied, the person waiting the table most often asks the person with the least significant disability what do they want, or whatever. So, that was it. You know, it's kind of like if you were black and light skinned, you were treated better than if you were light skinned. I think that's true in our movement as well. I think a lot of times we don't have patience for other people with other types of disabilities. You know that if a meeting is wheelchair accessible, do we really have to pay money for an interpreter? Or if you're deaf, you know, we speak a different language, we're not disabled. So yes, there's a lot of that. And there's so many hierarchical things with disability if you look at the tax structure. If you're blind, you can deduct a hell of a lot more money and get more money back on your taxes, because you're blind, as opposed to someone who has a different type of disability. So yes, it exists on all different levels. But, I think that in our movement, like people who had mental health issues--we've treated them differently. We never
Jacobson
How does that affect the movement?
Saviola
By not being open and embracing the differences. I mean, I think if you look at the movement, even groups like DIA, it's still predominantly people with physical disabilities who are involved. They don't even have interpreters at regular meetings unless you ask for an interpreter.
Jacobson
Really?
Saviola
Yes.
Jacobson
Is that--
Saviola
ILCs, they don't usually have interpreters on staff. They may have one person who signs, and that person does everything for the deaf consumer, rather than have someone with a different disability to go to different people on the staff for different services. But, if you're deaf, you go to one person who provides them all.
Jacobson
Is that part of the problem of getting people together?
Saviola
I think so.
Jacobson
And how do you resolve that, how do we as--
Saviola
I think it's by exposure, I know probably one of the most enlightening experiences I had was when I first came to CIDNY, the person I hired as my assistant director was a woman who was very hard of hearing, but could verbalize, and could lip read and sign. And just learning what it was that she needed, how certain things that made it easier for me did not make it better for her. And how sometimes I would even get impatient with her. Oh my God, everyone's got to get an interpreter, how much money is that going to cost? You know, and I think the only way you get beyond that is by working with people who are different. And then you kind of--.
Then it's not that alien anymore. But when Mary started working at CIDNY was, like, we didn't have enough funding so that the person who was my administrative assistant was always her, was also her interpreter. And she needed an interpreter. But I need my administrative assistant. I can't write. She can't hear. You know, I think that was a good learning experience for me.
Jacobson
Well, is there anything else you want to add.
Saviola
No, I don't think so.
Then we're done. Thank you.
Saviola
It was fun.
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.
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=hb5c60042m&brand=oac4
Title: New York Activists and Leaders in the Disability Rights and Independent Living Movement: Vol 1
By: Sherer Jacobson, Denise, editor
Date: 2004 (issued)
Contributing Institution: Regional Oral History Office. The Bancroft Library. University of California, Berkeley. Berkeley, Calif., 94720-6000; http://bancroft.berkeley.edu
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