Disability Rights and Independent Living Movement Oral History Project

New York Activists and Leaders in the Disability Rights and Independent Living Movement: Vol II

  • Denise Figueroa
  •     Early Activist in Disabled in Action, President of National Council on Independent Living, 1991-1995
  • Patricio Figueroa
  •     Early Activist in Disabled in Action, First Director of Center for Independence of the Disabled in New York, 1978

Interviews conducted by
Sharon Bonney
in 2001

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

Acknowledgements

The Disability Rights and Independent Living Movement Oral History Series was funded primarily by a three-year field-initiated research grant awarded in 2000 by the National Institute on Disability and Rehabilitation Research (NIDRR), an agency of the United States Department of Education, Office of Special Education and Rehabilitative Services. Any of the views expressed in the oral history interviews or accompanying materials are not endorsed by the sponsoring agency.

Special thanks are due to other donors to this project over the years: the Prytanean Society; Raymond Lifchez, Judith Stronach, Dr. Henry Bruyn, June A. Cheit, Claire Louise Englander, and the Sol Waxman and Tina P. Waxman Family Foundation.

Series History

by Ann Lage

Disability Rights and Independent Living Movement Oral History Project

Historical Framework

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

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

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

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

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

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

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

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

Project Design, Interviewees

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

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

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

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

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

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

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

Interview Themes and Topics

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

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

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

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

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

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

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

Project Staff and Advisors

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

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

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

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

Oral History and the Oral History Process

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

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

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

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

Print volumes can be read in the Bancroft Library and at the University of California, Los Angeles, Department of Special Collections. They are made available to other libraries and to organizations and individuals for cost of printing and binding. Many of the oral histories are supplemented by a videotaped interview session. Video and audiotapes are available at the Bancroft Library.

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

The Bancroft Library's Disability Rights and Independent Living Movement Project, of which these oral histories are a part, was funded by field-initiated research grants in 1996 and 2000 from the National Institute on Disability and Rehabilitation Research [NIDRR], Office of Special Education and Rehabilitative Services, U.S. Department of Education. Any of the views expressed in the oral history interviews or accompanying materials are not endorsed by the sponsoring agency.

Special thanks are due to other donors to this effort over the years: Dr. Henry Bruyn, June A. Cheit, Claire Louise Englander, Raymond Lifchez, Judith Stronach, the Prytanean Society, and the Sol Waxman and Tina P. Waxman Family Foundation.

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

Disability Rights and Independent Living Movement Oral History Project

Denise Figueroa

Blind Services and Advocacy and the Independent Living Movement in Berkeley

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

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

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 Figueroa, dated June 26, 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 Figueroa, Early Activist in Disabled in Action, President of National Council on Independent Living, 1991-1995, an oral history conducted by Sharon Bonney in 2001, in New York Activists and Leaders in the Disability Rights and Independent Living Movement, Volume II, Regional Oral History Office, The Bancroft Library, University of California, Berkeley, 2004.

Tape Guide

  • Tape 1, Side A 9
  • Tape 1, Side B 17
  • Tape 2, Side A 25
  • Tape 2, Side B 33
  • Tape 3, Side A 41
  • Tape 3, Side B 49

Interview History--Denise Figueroa

Denise Figueroa is one of the early disability activists from New York, who became a leader in the national disability rights movement. As a child in school, she felt very isolated and resentful attending separate classes for people with disabilities. Within a month of attending Brooklyn College, she had joined SOFEDUP [Student Organization for Every Disability United for Progress] and was demonstrating with Disabled in Action against President Richard Nixon's veto of the Rehabilitation Act of 1972. She has continued her advocacy for more than thirty years; a recent endeavor was working on health care issues under President William Clinton's administration.

In her interview, Ms. Figueroa explains that New York had state access laws as early as 1968 and people with disabilities were able to acquire personal attendants, so New York activists, from the start, had a national and not a local services focus. Disabled in Action, started by Judy Heumann, always had an equal rights/civil rights perspective for people with disabilities on the state and national level. Ms. Figueroa states that the activities of Disabled in Action prepared her for everything that was to come her way in the disability movement. She recognized in 1972 that she was part of a disability rights movement and was greatly influenced by the Vietnam antiwar movement and the women's movement.

Ms. Figueroa worked at Long Island University in the disabled students' program and then for the Mayor's Office for the Handicapped in New York City. She was employed by the Eastern Paralyzed Veterans Association and advocated for multimodal transportation. In 1985 she moved to Albany, New York, and soon became the director of the Troy Resource Center for Independent Living. She became a member of the board of the National Council on Independent Living (NCIL) in 1987 and ultimately was president.

Ms. Figueroa's interview offers insight into the struggle in the 1980s to define an independent living center. There were originally three types of centers, the transitional living model which was set up in Houston, the Center for Independent Living, Berkeley, model, and the Vocational Rehabilitation model. The Berkeley model, which was consumer managed, was ultimately adopted and no organization using a different type of model could be a member of NCIL.

Perhaps Ms. Figueroa's proudest achievement was establishing a national presence for NCIL by opening an office in Washington, DC. She discusses in detail how they used training grant money to establish the office, hire an executive director, and build an organization which, according to Washington's inner circles, must be at the table when national disability policy is discussed.

Ms. Figueroa talks about fighting and organizing for passage of Section 504 of the Rehabilitation Act and for passage of the Americans with Disabilities Act. She says that working on different movement issues has always energized, excited, and moved her. Testimony given at one of Justin Dart's state tour meetings in New York brought her to tears when a woman labeled as mentally retarded had the opportunity to speak about her institutionalization for the first time. Ms. Figueroa says that people in the movement must remember their history, band together, and be ever vigilant.

The interview was held on June 26, 2001, in the conference room at the Troy Resource Center for Independent Living. Two sessions, one in the morning and one in the afternoon, were held with a lunch break in-between. The transcript was lightly edited by the interviewer and by Ms. Figueroa.

Sharon Bonney
Interviewer/Editor
February, 2004

Emeryville, California


9

I. Family, Segregated and Mainstream Education, and Disability Activism at Brooklyn College

Family and childhood education in Connecticut and New York


[Interview 1: June 26, 2001] [Tape 1, Side A]
A guide to the tapes follows the table of contents. Bonney

Denise, we usually start with just getting some early background and family history. Can you tell me when and where you were born, and a little bit about your mom and your dad, and if you have brothers and sisters.


Figueroa

I was born in Brooklyn, New York in 1954. I was raised in Brooklyn most of my life with my parents and four sisters. I have one older sister and three younger sisters. We lived in Connecticut for about five years while I was very young, from about two until seven. A lot of people say that I don't have a Brooklyn accent and I think that's probably why.

I contracted polio when I was nine months old, so I grew up as a person with a disability, pretty much; I don't recall not being disabled. That was in 1955, the last epidemic in the Northeast, that I contracted polio. With such a large family you've got friends around you all the time; you don't really need to be out and about much for friends. I had pretty good socializing experiences while I was young which, of course, changed as I got older and my sisters went off with their friends and stuff; that was a whole different story.

My young years I went mostly to schools that didn't have people with disabilities. What happened was, when we were in Connecticut, I started school and I was the only kid with a disability in the town. They didn't have special education, and, of course, that was prior to IDEA [Individuals with Disabilities Education Act] anyway, so they really didn't have many accommodations for kids with disabilities. In my case, it actually was a positive, because what they did was instead of me climbing the steps for the school bus--because I used braces and crutches--they just sent a cab for me. They sent me to school everyday by cab, and I went to school with all the rest of the kids.


10

When we left Connecticut, I was in the second grade, moved back to New York City, and was introduced to what they called health conservation classes. That was my first experience with being segregated as a result of having a disability. I was very unhappy, very uncomfortable with it, went to a different school than my sisters did. It was four grades in one classroom, a very poor education.

I complained a lot to my mother about the fact that I already had this material in school, that I was familiar with it. We stuck it out for a couple of years. When I was leaving the fourth grade, going into fifth, finishing up a third-grade math book coming out of fourth grade, over the summer, she finally realized that something was wrong. So she took me over to the Catholic school and they accepted me. I went into Catholic school and again was one of two kids with disabilities. I was mainstreamed, had to do all the same as anybody else, academically.


Bonney

At the time, was it required in the state of New York that you go to those health conservation classes? Could you not have gone through a regular classroom?


Figueroa

You couldn't. If you had a disability, at least in New York City--I don't know what happened in upstate New York, but I know in New York City you were required to go to the health conservation classes. Or they had you on homebound instruction if you were not able to go to school. That was just for kids with physical disabilities; I don't know what they did with the kids with mental retardation or other cognitive disabilities. They probably weren't going to school, or they were even more segregated than we were. We were in a self-contained classroom within a public school. They probably sent them to separate facilities some place. These were kids that were just separated because of physical disabilities. Then the blind students were in another place; they weren't with us either. We're talking about people with CP [cerebral palsy], people with polio, other types of birth defects that were just strictly physical involvement.


Bonney

Why were the Catholic schools so welcoming?


Figueroa

You paid a tuition; it was a private school. Although in this case my family didn't have a lot of money. My mother went and spoke to the mother superior and explained the situation and they accepted us without paying tuition to go. If it wasn't for them I know my education would have been very poor, if I had to rely on the public school education.

I did for high school. I ended up going back into public school for high school, but that set up was a little different. You had a home room that was all the disabled kids, but then you went out to class with everybody else. So I was functioning at the same level as everyone else, or needed to, in order to do well.

For high school, although it was isolating, it was still academically the same that everyone else was getting. You didn't feel part of the school because all the disabled kids went to one classroom--ninth through twelfth all had the same homeroom, same homeroom teacher. From there we went out to other classes, and for those kids that needed additional support they would stay in the classroom for support from the teachers.


Bonney

Being in the health conservation class with other disabled kids, did it give you a sense of community, or were you just fed up because it was so slow and you were ahead? How did it effect you?



11
Figueroa

It's interesting that you ask that question because while I was in school I resented the fact that I had to be with other kids with disabilities because I had experienced school differently than the other kids, meaning that I was just part of the crowd at one point. Then having to be isolated again with just the kids with disabilities, I was embarrassed by it. I was resentful. I certainly didn't identify in a positive way with being a person with a disability.

Yet some of those people that I went to high school with are people that I met once I moved on to college, or that I stayed friends with. As I became more aware of myself as a person with a disability, more accepting, those were the friendships that I maintained. I guess it was the roots of a community, or a sense of a community, but at the time I wasn't really aware of it because I was feeling so isolated. I was a teenager, so naturally you are resentful anyway as a teenager, feeling uncomfortable about yourself.

I did make some really good friends there, and one in particular that I still talk to, to this day. She lives in Florida. We don't get to see each other much, but we do correspond. Thank God for email; you can send email to each other these days. We have kept in touch. We definitely went our separate ways in terms of career choices and other things, but there was a connection there that I haven't had with anybody else, or that I never had an opportunity to have with anybody else.

We experienced similar things in terms of discrimination. Ironically, she was probably more aware of it then than I was in high school, and as I got more involved with disability rights stuff as I went to college, she was less involved with that. We did take different paths. Those were my beginning roots. That and also having gone to camp with kids with disabilities.

There were kids later on that I would come across, or meet also through rehab. I went to Saint Charles Hospital in Brooklyn. It was an orthopedic hospital. It's where I had several surgeries for straightening out tendons and things like that. It was there that I met kids who later on in life I would connect back with. There there was a comradery because you were all experiencing this kind of wacky medical stuff.


Bonney

What years were you in the hospital?


Figueroa

The first time I remember very little of it, and that was in Connecticut in Newington Hospital. I had gone in when I was six for tendon releases. I had been using braces and crutches all of my life, of course, up to that point from a year-and-a-half old when I started walking on them, when I got out of the hospital the first time, to that point. I was bent over a lot so they did some hip releases--tendon releases in my hips. I was in the hospital for nine months at the time. It's like a different world altogether after a while. I made friends there, went to school in my bed. They had classrooms in Newington Hospital so you actually were taken to your classroom and went to school.

After that I had a dislocated hip in '64. We were back in New York, went to Saint Charles Hospital, and had surgery in '64, and in '66 for tendon releases again. That was the last time I was actually in the hospital. The time in '64 I was there for about three months, and then two months two years later. I did the home instruction stuff, and had a teacher come to the bed. In Saint Charles that was how they did it: a teacher came and spent


12
some time with you from the school system. I was in Catholic school so they were using my books from there and just keeping me up on my math, and English, et cetera.


Bonney

You talked a little bit about your siblings. How did they relate to you as a disabled child?


Figueroa

My older sister was extremely protective of me. She was two-and-a-half years older than me, and I guess my parents kind of instilled in her that she had to take care of me on some level. If anybody teased me she was there fighting them off. I had a pretty good relationship with my sisters. My younger sisters--because they were my younger sisters and I was home a lot, I would help out with the cooking and things like that--I think they kind of looked up to me a little bit. I was like an older sister to them. I eventually kind of assumed the role of the oldest sister, I think, in the family because my sister, as she was trying to be independent and go out with her friends, I was the one there who was always being supportive. So we always had a good relationship.

I think with having a disability one of the things though that is different is that I didn't get the discipline that my sisters got. I probably played the angel role as opposed to being too rebellious to begin with, at least as a kid, which is probably why I became so rebellious later on. I was always the good one, always the role model here, that they all hated after a while. I think it was kind of hard to live up to that. Early on I was like an older sister, but after a while I think they kind of resented the fact that I was always the good one, the perfect one. We haven't had any problems as siblings really; there's been no terrible thing, but I'm sure there was some sense of resentment there. Also just because I would go into the hospital and get gifts, and be treated differently, and get visits--you would get more attention. I think that that takes away from the other kids in the family. None of them have ever really expressed that to me, but you know, I guess I was kind of aware of it.


High school years in Brooklyn, 1968-1972

Bonney

Tell me more what life was like in high school. Was it accessible?


Figueroa

I went to one of two accessible high schools in Brooklyn. They had an elevator, and the reason that I had to go to that high school was because it was accessible. I had no choice. I couldn't go to my neighborhood high school, because even though they had elevators, there were stairs everywhere to get in and out of the place. Erasmus Hall High School was my neighborhood school. My sisters had gone there, but I wasn't able to go. Again, I was feeling resentful, as I said, going to high school. I went to Sheepshead Bay High School, which was a newer high school; it was only ten years old at the time. I went in '68, so it was built in '58. It had an elevator, and it was level; they had a level entrance.

It was a big high school, very nice. It was certainly more modern and nicer looking, and cleaner than some of the other schools. But I wasn't part of the community; I didn't know anybody from my neighborhood. Particularly in Brooklyn--you grow up, your neighborhood is like your block, or a couple of blocks, because there were so many people concentrated.



13
Bonney

It's your city.


Figueroa

It's your city, so you get to know all of those kids. The good thing about going to Catholic school was that I was going to school with most of the kids from my neighborhood. The school was two blocks away, so I knew a lot of the kids there. When I had to go to Sheepshead Bay, not even the local public high school, it meant that I didn't know anybody.

I got bussed in for school in the morning and bussed out in the afternoon, so you didn't have time for extracurricular activities. You couldn't control your schedule. I was the class representative for my homeroom, I guess it was in my senior year, so I got to meet a few of the students that were involved in student government, but I couldn't hang out with anybody. They weren't near by and I couldn't get to Sheepshead Bay because it was about twenty miles from the house. It was a good distance. At least twenty minutes--whether that's twenty miles in Brooklyn--it was probably less than that, but it was a good ride.

I couldn't take the busses or anything to get there because obviously nothing was accessible yet. Although I used braces and crutches and could climb the bus stairs I wasn't that comfortable trying to do that alone.

It was a very isolating time for me. It was a time I felt very much apart. I did have a few friends from the homeroom, but we couldn't see each other either because we were all scattered around Brooklyn. It wasn't like any of us lived near each other. We would talk on the telephone. My friend Audrey and I, we would talk on the phone--she's the one who I still keep in touch with. But that was it. I didn't go to school dances, didn't go to any extracurricular activities, was never asked on a date.

We've had a lot of conversations in this office about that--how when you grow up with a disability, or just being on the fringe, even if you don't have a disability--going through the high school experience and never being asked out, it's very hard. It was a rough time for me.

I think that's probably why when I got to college and I realized I could control my schedule, which was the key--the transportation was the key for me--I just felt free. I just felt so free and I started participating in anything and everything I could. High school was tough.


Bonney

How did your teachers treat you in high school? Did they think you were college material? Did they give you aspirations to go on?


Figueroa

Yes, they did. I have to say that I was a good student, so academically I knew that I could do well. I was encouraged by many of the teachers to go on to college. I was in the academic tract; there were different tracts in high school, and I was in the academic tract.

In high school, in my senior year, we had representatives from the state Voc Rehab [Vocational Rehabilitation] agency come and speak to the classroom about VR services, and about going on to college. I guess it was kind of always something that I knew I would probably do, or at least I thought I would do it, and yet none of my sisters ever had that aspiration, or expectation, even by my parents. We came from a working-class


14
family and my parents expected you to go to school, get a job, get married, and have kids, and that was the plan for the five girls.

For me, though, I was always told you can always rely on your brain to get you where you need to go. Although my mother hoped that somebody would marry me, I don't think there was ever a real expectation that I would get married, or at least not very soon. They put a lot of stock in the fact that academically I had a lot going for me and should pursue that.


Bonney

It was your only hope.


Figueroa

It was my only hope. [laughing] I was just a kid. I used to say that I wanted to be a doctor, because of course what was I exposed to? The medical profession. I quickly learned in high school that chemistry and biology were not my strong suits, and so I dropped that desire quickly. I did do well in accounting, in bookkeeping. I took accelerated bookkeeping, and actually started out as a college major to go into accounting. My parents knew that that was what I wanted to do, and that seemed like a really steady, sure thing.

My mother made sure I had two things: one was that I did well in school, and the other thing was that I knew how to cook. That was the other thing she said to me: "If you know how to cook you can take care of yourself." Those were her things, so I learned how to do both: the academics and the cooking. Dating was not anything that was in my mind, or at least not in their mind. Me, I just assumed that it was never going to happen.

I did, in high school, have one teacher who had polio. She was an English professor that I had in my junior year, I think, in high school. Because polio had been around for so long, there were certainly adults I knew with polio who had been successful working, and even some that were married and had families. This teacher was married, had children. She was very stern though; she wasn't someone you could warm up to very much. [laughter] But I had some role models, so I knew that there was a future for me.

Of course having had polio, and everybody talked about FDR [President Franklin Delano Roosevelt]--he was the president while my mother was growing up. For the twelve years that she was growing up, he was the only president she ever knew, so she would always talk about him and talk about how he could be president even with polio, and you can do anything.

There was always a very positive sense I got of my abilities as a result of that--maybe overstated in terms of the expectations, and I suppose in some sense it made me feel like I had to be perfect in everything that I did. That certainly hampered me as I learned I can't be perfect in everything that I do. That's been a hard lesson because that's actually the expectation that I had growing up, was that everything would be perfect, that I could excel--always get straight-A's, always this, always that. The pretty one, and the this, and the that, so it was a lot to live up to.



15

Challenging a vocational rehabilitation counselor

Bonney

I have a quote from something that I read about you. You're talking about a high school teacher. I'm assuming it's an accounting teacher, although maybe not. The quote says, "You have to be smart to be an accountant, you know." Someone said that to you, even though you had already been accepted into a four-year college.


Figueroa

That was actually my VR [Vocational Rehabilitation] counselor who said that to me. That was not a professor at school at all. That was my Voc Rehab counselor.

The first time I went to OVR, which is Office of Vocational Rehabilitation, it was the spring before I was going to college. It was in my senior year, and it was my first encounter with Mr. Greenberg. I will always remember his name: Saul Greenberg. My friend Audrey, the one that I am still friends with, had him as a counselor as well. She went to him first. Audrey had been accepted as an accounting major into a private four-year college, and he talked her out of it and suggested to her that she should go for bookkeeping in a two-year college. Even though she had been accepted and had a scholarship to go, she went to the two-year college because she was intimidated by him.

When she told me about it I got so angry--I was really, really very angry, and when I found out that he was my counselor, and I had to go him, I went with my mother. I had already told my mother what had happened to Audrey. My mother and I always talked, and I would kind of pump her up and let her know how things were.

We went to that appointment, and he started immediately. He said, "Well, you know, you have to be smart to be an accountant." I said, "I know I have to be smart to be an accountant. I am smart. I've been accepted to college. There's no reason that I can't do this." "Well, why don't you try a two-year college first? Let's see how that goes, and then you can always go on to a four-year college. So I said to him, "I already know what you did to my friend. You're not going to talk me out of going. The only reason that I'm here is I need help with transportation and books."

The tuition for City University, which is where I was going, was a $58 matriculation fee. I knew somehow I would get that money, even though my parents didn't have the money. I said, "I need help with transportation and books. If you don't want to do it, I'll figure out a way to get there. I am not going to go to a two-year college. I want to be an accountant, and that's what I want to do." He said, "You've got a chip on your shoulder." I said, "It's because I know what you've already done to somebody else, and you're not going to do it to me." My mother supported me; she said, "She's very smart; there's no reason that she can't go on to be an accountant if that's what she wants to do. We'll figure out a way."

So I left figuring that was the end of it. I was never going to see this man again, I hoped, and I also was never going to hear from him again. I guess I was determined enough that I must have sold him, I don't know, but I got a phone call from the transportation company saying that I was authorized for transportation for college in the fall, and what was my schedule? I was like, "Oh, that's interesting." I never heard from him again. I got the authorization for that, I got my book thing, and he had a heart attack the next year. Unfortunately, sadly, I have to say that I was not very generous when I heard that, and Audrey wasn't either.


16

She got sidetracked; she never did pursue her four-year degree. She did very, very well. We were from working class families and getting a job was the focus, and so for her, and her family, I guess that that was--she did her two years, and she got out, and got a job as a bookkeeper.

I changed my major after I was in school and discovered disability stuff, and politics, and disability rights, and all the rest of it, but I never was sorry that I stood up to him. That was the first time that I had really stood up to anybody, probably. I was so angry at what he had done to her. She was better academically than I was, so I knew that she could do better than even me as an accountant. I was just so outraged by it that I wasn't going to let him do that to me.


Bonney

Did VR pay for your entire four years of school?


Figueroa

Yes, they did. Again, it was a matriculation fee. The fee was so minimal that they barely had to pay anything. For that it was City University. New York City had a very good university system that actually was better than the state university system. Very competitive. It's not because my grades were so tremendous that I got into Brooklyn College, but it happened to be one of the best academic schools in the city university system. It was because it was accessible that they were going to accept grades that were just a little lower.

They had also started what they called open enrollment in City University at the time. Up until that point you had to have a ninety-some-odd average to get into Brooklyn College. They started taking students with B-averages to get in and providing supports to them so they could open it up to minority students and other people who hadn't had the academic opportunities. I was definitely a beneficiary of open enrollment, and got into Brooklyn College because it was an accessible campus as opposed to some of the others that weren't.


Introduction to disability activism at Brooklyn College: SOFEDUP

Bonney

When you got into Brooklyn your major area of study was going to be accounting. Then what happened?


Figueroa

About a month--not even a month--probably two to three weeks into school starting, a couple of the students that I knew from Sheepshead Bay High School who had disabilities, approached me at campus and said, "There's a meeting of an organization of disabled students here on campus coming up on Wednesday. Would you like to come?" I said, "Sure." It was, like I said, all new to me, and I was excited to get involved in anything. They made it possible because it was from your twelve-to-two lunch period; on Mondays and Wednesdays they had club hours so you could go to anything.

I went to the meeting of SOFEDUP [Student Organization for Every Disability United for Progress]. If you learned how to say the name you could become an officer. [laughter] It was my first exposure to disability from a political perspective. I was choosing to go, first of all, so I felt like I had some control over it, and I didn't mind being there.



17

[Tape 1, Side B]
Figueroa

There were some students running for the different officer positions of SOFEDUP. One of them was Pat, my husband, Pat Figueroa, who was running for vice president. He had just transferred to the college. That was in '72. Another guy, Arthur Lefkin, who was running for president. Arthur had already been at the college for two years, maybe three--this might have been his third year at the college. He was an older student returning, but who had acquired a disability. Frankly, it was a spinal cord injury of some kind, but it wasn't actually a severance of his spinal cord; I think he had a tumor or something on his spine that was causing him to be a quad. He was one of the founding members of SOFEDUP, he and a guy named Fred Francis.

Fred had already left the school, but they started this organization in 1970. Fred was the president of it in the beginning, and then Arthur took over as president when Fred left. Pat was running for vice president. Pat was already on the board of Disabled in Action in New York City. He was talking about the fact that the organization had accomplished a lot, and how accessible the campus was. Brooklyn College was one of the most accessible city university campuses, and that had only happened in a couple of years from the student activism.

It was only four students that started SOFEDUP, but they got the student government to support demonstrations, went to the president's office, and took over the president's office of the university to get their attention, and embarrassed him, basically, into making the campus accessible.

Fred was a double-amputee who used to bounce up the steps to get to class. There were a couple of other students who had people carry them upstairs. So they banded together with the other students and got ramps into these buildings when, as I said, it was prior to any mandate for it. It was 1970 when they did it.

By September of '72, when I started there, most of the main buildings were accessible, and they were already putting new buildings in that were being built as accessible at the time. It was an old campus, and had been around for a long time, and had beautiful old buildings but awful access. They had wooden ramps in and out of the places.

Pat had talked about how you could spend your college life just enjoying what you have here, and the access that you have here. But when you leave you have to live in this world; you have to be able to get around and the rest of this world is not like the college campus. You can't stay isolated. He was talking about a demonstration that was going to take place at Federal Plaza the next week, and would any of the students want to go? He would be willing to provide transportation to get them there, et cetera. He had a car, which was like the big thing; anybody who had a car, that was great. Of course I thought he was pretty cute, too. It didn't hurt.

I volunteered to go. I thought this sounded pretty exciting. This sounded pretty exciting to get to go to a demonstration. My parents were horrified when they heard that I was talked into a demonstration; that was their worse nightmare about me going to college, particularly Brooklyn College that had been one of the really active campuses, the antiwar movement. They had heard about demonstrations around all the college


18
campuses at the time. Everything was really heated up, and we were all feeding off of that energy, certainly.

That's what happened--I went to the SOFEDUP meeting, and it kind of spiraled right from there. I kind of went in feet first and just leaped into everything possible.


Disabled in Action demonstration, 1972, at Nixon headquarters: Judy Heumann, ringleader

Bonney

The demonstration was about what?


Figueroa

That was a demonstration at Federal Plaza to protest President Nixon's veto of the '72 Rehab Act [Rehabilitation Act of 1972].


Bonney

Did you even know what that was when you signed up?


Figueroa

Not until I signed up, no. I learned very quickly what it was all about. That demonstration was an amazing experience for me. I was still using my braces and crutches, and we started out at 26 Federal Plaza, which was downtown Manhattan, down near Wall Street, that area. We marched from 26 Federal Plaza up to 52nd Street, 54th Street, I can't remember--the Hilton Hotel, where President Nixon had his re-election headquarters. That was a really long walk, and I walked the entire way because I was stubborn and determined to do that.

It was just tremendous. The cops escorted us through the whole thing. We had these mounted police, basically, keeping traffic aside. This large group of people with disabilities--I can't remember how many were there--it had to be at least 100 people, probably 150. It was a lot. There were a lot of us.


Bonney

So obviously people came from other than Brooklyn College.


Figueroa

Absolutely. This was a DIA action--this was a Disabled in Action activity that was going on. Because Pat was on the board of DIA he was trying to recruit students from the college to go and participate. I think I was the only other one who went. That was usually how it went for the outside actions, because most of the students there were already comfortable. The new ones were already like, "Oh well, things are accessible. I've got my school work to do."


Bonney

Apathy.


Figueroa

Apathy, yes, there's the word for it. There were some that were certainly interested, but for me it was just so exciting to be involved in this.

That's where I met Judy Heumann. That was the first time I met Judy Heumann was there at the demonstration, and Bobby Linn, who I think you might be interviewing; Denise McQuade, all the people who were involved in Disabled in Action, that's where I met them. We had disabled Vietnam veterans: Bobby Mueller, who was part of that


19
demonstration, and Ron Kovic. It was just amazing. Like I said, it was my first experience with any of this.

We marched up to the Hilton and went inside the building. They never expected us to try to take over the headquarters, and we did. We got in the elevators, went upstairs, and just sat in the offices there and asked to have a meeting set up. We were there until about one o'clock in the morning, and this demonstration had started in the afternoon. We were there for the long haul, pretty much. We had these attorneys that were involved. I think the attorneys were there for that, I'm not sure. I can't really remember that.


Bonney

What did you see Judy doing?


Figueroa

Judy was definitely the ringleader at that point. She was calling the shots, talking to the press, and trying to encourage people to stay together. Good question. I'm trying to remember. She was busy caucusing, I guess, is all I can--that's what I always think about Judy doing: caucusing on the side, trying to figure out next strategies.


Bonney

Was she caucusing with the other DIA members as a collaborative thing, or what?


Figueroa

Collaborative? Yes, for the most part. She was definitely the person in charge. You knew who was in charge; there was no question about it. She took recommendations and worked with everybody. It wasn't like she was just bossing people around. It was just really neat to get to see somebody who was so sure, so confidant, so in control of everything, or at least it felt that way. It was pretty neat. I can't describe it any other way.


Politically savvy students with disabilities: the New York milieu

Bonney

How did these young college students in New York City get so politically savvy?


Figueroa

I'm not really sure how. I do think it really had so much to do with the fact that the women's movement and the civil right's movement were--I mean we were just right on the edge of all of that stuff. You had the '64 Civil Rights Acts, you had the seventies women's rights--you know the seventies was the women's rights actions and movement, and here we were, it was '72. You had the antiwar movement in there. The college campuses were really active. Everybody was very political at the time. We were just all fired up.

I remember when we failed to override that veto of the Rehab Act. I remember feeling so devastated, like the world was coming to an end. Those issues just felt so important. We were all just really passionate, and I guess we just fed off of each other. All of these different things. You had those role models to follow, and to see how successful they could be. We had successes, and so it helped to fire you up more. Those successes in terms of accessibility on the campus.

New York City was a really active place. It was just a great place to be. I always say I was just in the right place at the right time, just happened to meet the right people. Otherwise, I don't know--I probably would have never gotten connected to the


20
movement, not as a movement; not learning about myself and having those conversations about how I felt about being a person with a disability. None of it was in a formal peer counseling type of a group; it was just they were your peers and you were talking and it just happened, it evolved.


Bonney

Usually groups that were forming and formed at that point in time, in the early seventies, were focusing on services for themselves: attendant care or medical services. How did this group get so, sort of national in their view point? Or how did you even find out about the Rehab Act in the first place?


Figueroa

It's really hard to say. It was certainly people like Judy Heumann that helped us to have that bigger picture. There were efforts to get services and accessibility locally, and things like that. I can't even tell you how we knew. It was just that there was already an informal network of people. We knew Ed Roberts out in California. Judy knew Ed, and Pat knew Ed, and people were already starting somehow to get connected with each other.

You're right, it was kind of amazing that we were that aware of all the national stuff. We really were; it was our focus. We had already, in 1968, managed to pass a building code in New York. There were activists earlier who had gotten changes to the New York City building code that were very progressive, and in '72 the state building code was already revised.

I think on a state level we were already kind of advanced and so we weren't fighting for some of the basics that people needed, and we were able to focus on the more national issues. We already had attendant care.


Bonney

How did you get that? How was that provided?


Figueroa

At least in New York City, and it was probably very different up state, but in New York City there was the Human Resources Administration is who administered home care. I, not having been a recipient of it, I can't really tell you all the details of it. I can't tell you how good it was. I'm sure it needed major improvement.

At the time you could still, if I remember correctly, at that time you could send people to get certified and hire people that you knew--not necessarily family, or relatives--but you were able to try to recruit your own home attendants. That was paid for through Medicaid. New York state always included home care as one of the Title XIX services, you know the federal medicaid program. I'm more fuzzy on that stuff. I truly don't know the details of it. But it seemed like you could get those services even then.

I remember people having attendants and having them paid for. It was not widespread, it wasn't readily available, and there were not a lot of people who were coming out of nursing homes at the time. There were still people living in Goldwater Memorial Hospital out in Manhattan. It was an island, literally, that had this rehab hospital on it, that people lived in.

One of the people that became very active in DIA in those early days was a woman named Marilyn Saviola. Marilyn was a quad, a ventilator-dependenondisablednt post-polio, who moved out of Goldwater Hospital. She was a rehab counselor. She moved out of Goldwater, and her whole focus was attendant care and learning how to use the local


21
system in order to be able to get her attendants. She had attendants that were drivers and who lived with her. I know that it was around--because, as a matter of fact, I had even interviewed to be one of her attendants when I was using my braces and crutches. I was about 18, so that was still in '72, or '73 maybe it was. So I know that there was attendant care available that was being paid for by Medicaid.

They had a spend-down provision and you had to spend down to poverty to do it if you were working, so not many people figured out how to manipulate that system, but Marilyn was amazing at it, and still is to this day; she's one of the people that certainly knows the medicaid system inside and out, and was really very involved in advocating for that.

I guess because some of the basics at least were there, that it allowed people to focus on those bigger issues. We just had some incredible people in New York too; you can't deny that part of it. Judy fought for her teacher's license--had to fight the board of education. Maybe because things were so bad there were people who were just fired up and fighting all the time for things. Once she got her teacher's license she just had that global perspective. We had people who were able to--I can't even explain it completely, but you know a lot of the people were either middle class or working class people who at least had their basic functions of survival taken care of, so I think could participate in the bigger picture. With the advent of television and seeing so much else going on I think it just fired you up to be more involved and be more aware.


Bonney

You said when you marched to Nixon's headquarters you had about 100 people, and you were all sort of spurred on by the Vietnam war movement and all the other movements. Did nondisabled students join in your efforts? I know you guys joined in the Vietnam effort, or the free speech movement, or the women's movement, but did nondisabled joined the disabled movement?


Figueroa

Not really. I mean there were a few that did who were friends of individuals who would come along for the ride, basically come along and participate. But I can't say that there were that many nondisabled people, not from the college campuses. That demonstration was hardly college, it was mostly DIA and other people who were working in the community who participated in that. There were nondisabled people who were part of it, but they were friends and relatives of the people with disabilities; they weren't people who just took an interest for the most part, as I recall.


Bonney

Another thing I wanted to follow up: you said that you knew Ed Roberts, some of the people knew Ed Roberts existed and that he was out in Berkeley. Were you at all aware of any of the other CILs like Boston, Kansas, Chicago? Were you connected with them at all?


Figueroa

Boston, I think, had some activity going on, but I don't think we were that connected there. I don't think Chicago--I don't think Access Living was even open, were they?


Bonney

I'm not sure.


Figueroa

I don't think they were at the time. Most of the activity that we were familiar with was what was going on in California and New York. New York always has this attitude anyway, that there's more going on here than there is most other places. California and


22

New York, I think, specialize in that. A lot of people that are in California came from New York, so I think it kind of carried over. [laughter]

We knew California was like the mecca; it was the place to be--Berkeley. Not only for the antiwar movement, but also the disability rights movement that was developing rapidly out there; so we were familiar with that. But I can't say that it was a tremendous--I mean it was an influence, but it was not the driving influence in New York; it just seemed to be happening simultaneously. I think that the elements were there in New York, like they were in California, for people to organize and get active.


SOFEDUP activities

Bonney

What were the specific issues of SOFEDUP? What were they working on?


Figueroa

SOFEDUP worked on making the college campuses accessible.


Bonney

All of them?


Figueroa

Brooklyn College was what our focus was, but just as we had done with other issues outside of the college, at SOFEDUP we also were involved with trying to change the city university system. We weren't satisfied with just focusing on Brooklyn College; we wanted to make the other campuses accessible.

We got involved--there was a city university committee on the disabled that was formed with the pushing from our college campus. There were representatives of the other city universities. I think there were twenty-three city universities between the two-year colleges and the four-year colleges; it was a very large system. So they met regularly, and we went around. I remember being part of a group that went around and did surveys of the other campuses to give them feedback on accessibility. Then we went on to do presentations for the state university system. We tried, on all levels, to have an impact, and that had a lot to do with Fred Francis who was still working in higher education at the time. He was pushing, and we were pushing from the Brooklyn College level, and were showing the colleges an example of how you could make your college accessible.


Bonney

What were the focus issues for DIA? Were they different?


Figueroa

I should say also that SOFEDUP not only got into physical access but also accommodation for students: test taking, and we would braille stuff for people in the disabled students office. We had a disabled students office at the time, and we would put books on tape.


Bonney

Who ran that office?


Figueroa

Eduardo Dogue, Professor Dogue. He was from Panama, a spinal cord injured professor. He was already a professor, I believe, when he became spinal cord injured. A really neat guy, and actually somebody that Pat and I still keep in touch with. He's living now in Staten Island. He's a retired deacon. Ed was a neat guy. He was very interested, for


23
somebody who was from another country originally. His exposure was mostly people with spinal cord injury. He had a friend who was blind who was a priest, Father Pat, who Ed really got into braille and access for blind students. It was really neat. He was somebody who definitely wasn't only focused on the physical access issues; he really focused on making sure that the materials were available to blind students on the campus, and he learned braille himself and really promoted access for blind students. We had a pretty good, strong group of blind students on the campus as well.


Bonney

What was the emphasis for starting this disabled students program? How did it come about?


Figueroa

That was SOFEDUP. SOFEDUP was students who came together and said we demand that we have an office that can help facilitate disabled students being on campus, that can be a place for students to find out what's accessible, what's not accessible, that coordinates services, et cetera. Like I said, it's amazing: those students started--it was in 1970 that SOFEDUP was founded, and when I started in 1972 that office had already been established. Some of the ramps and stuff were already in the buildings. They had really accomplished a lot in a very short period of time, and it was strictly from embarrassing the president of the university. They just embarrassed him: they brought in TV cameras and took over his office and he was mortified, so it worked.


Disabled in Action's focus on civil rights

Bonney

How was DIA different?


Figueroa

Well, DIA--obviously it wasn't focused on colleges, it was focused on disability rights. It was a much broader perspective because of the Rehab Act--that was the first year that independent living was even going to be funded through the Rehab Act. Of course, it was vetoed, and that was the piece that was taken out in order to get this thing passed. It had Section 504 and 503 in it, that for the first time would provide some civil rights language.

DIA's focus was much more oriented towards civil rights as opposed to even access. They weren't doing stuff on architectural barriers removal or any of that; they were really focused on equal rights, or civil rights, of people with disabilities on the state level, on the federal level; they had actively fought for changes in the state's human rights laws. That was really their focus, was equality and civil rights as opposed to even architectural barriers.

It was an organization called the Architectural Barriers Corporation, ABC, that was run by people mostly with mobility impairments that had done a lot of the previous work on accessibility in New York City. They were really responsible for removal of a lot of the architectural barriers, and even if it wasn't removable, changing the building codes and stuff. They were the people that were key to that, and focused on that, so that that kind of freed DIA up to have that bigger picture too, because again we weren't fighting to get the building codes changed, we didn't need to; somebody else had already done that work.


Bonney

Did you work with DIA in getting passage of 504.



24
Figueroa

Oh yes, absolutely.


Bonney

Tell me about that.


Figueroa

Aside from the demonstrations in New York City, I was part of the bus trip down to Washington during the override vote, for the override of the veto in early '73. The New York City Mayor's Office on the Handicapped at the time had actually rented busses and took people down to Washington on busses for this trip. We went to congress, we went to the offices, and I remember being in Senator [Robert] Dole's office when we found out that they didn't have the votes to override the veto.

That was when I was just so devastated. It was my first trip to Washington. I had this idealistic view of life and thought we were going to do this. We're here, we're going to do it--and discovered it wasn't going to happen. It eventually did that year, later on that year, but not at that time. That was just devastating.

But yes, I did. I wrote letters, I went down to Washington, met with congress people, with other groups of people. I was so new at this stuff. I was just part of what was going on, but was happy to be part of it, and learned so much from everybody that was there. It was just such a tremendous experience for me. It's something that's carried me through many years, and even as being NCIL [National Council on Independent Living] president it was foundation for me to be able to do all of those things: to be able to meet with the president, and meet with other people because of the experiences I had in DIA. I always say here, at the Independant Living Center, I'm always trying to encourage people to bring consumers along to meetings just as Judy would always encourage people to do that, bring somebody new along so that they would learn. It was the only way.


Bonney

Did you work at all on the passage of the regulations in '77?


Figueroa

Oh yes, we were--let's see, in '77 where was I? I'll have to remember where I was even working. I was working at Long Island University, I guess the Disabled Student's Office there. It wasn't through LIU that I did that, it was mostly through--at that point--I have to think of where I was. I graduated in '76 from Brooklyn College.


Bonney

What was your major?


Figueroa

Psych[ology] and sociology. Real general. I really went for the broad liberal arts degree is what I ended up with. I started working, believe it or not, for Xerox Corporation when I left Brooklyn College.



25

II. Career in Disability, Establishment of National Council on Independent Living [NCIL] in Washington, DC, Systems Advocacy, and Importance of Disability History

Career in disability


[Tape 2, Side A]
Bonney

Denise, you were talking about graduating from Brooklyn College, going to Xerox to work, and then how you got into the 504 stuff.


Figueroa

I was just saying that they were looking to recruit people as college graduates and I happened to again be in the right place at the right time. [I] got a job there, but realized that I didn't want to work in the corporate world. I was so energized by working with disability stuff, and while I was at Brooklyn College I was at the disabled student's office. I had a work study job there for three of the four years that I went to school there.

I wanted to be involved, and I wanted to do it for a living. I realized that that was what I wanted to do. I left my job at Xerox after being there for about nine months or so, and took a job at Long Island University in the disabled students office. That was kind of how I decided to stay in disability. That was a service office, obviously, but it helped me keep in touch with everything that was going on.

In addition to that, my husband at the time was involved in getting the first independent living center off the ground in Manhattan, so I was keeping in touch through that. It was through CIDNY, the Center for Independence for the Disabled in New York, and my contacts through DIA, that I maintained awareness of what was going on with Section 504 of the Rehab Act and the regulations. Of course we were all thrilled when the legislation passed. I had been involved in the campaign to elect President Carter. Politically I had gotten involved in things--Pat, my husband, was working at the mayor's office for the handicapped at the time when Carter was running for office--I think that's where he was. At any rate, we were all excited when Carter was elected.

We all expected, of course, that the regulations were going to be passed immediately after that, or signed into law. We knew that they had been drafted for a while and they were


26
just sitting around, and that basically they were being stonewalled. Nixon had been forced into getting the Rehab Act, compromising on the Rehab Act, and getting it into law; but there was no way that those agencies were really prepared to implement it, or willing to implement it, and so the regulations were just being sat on. When Carter took office he had made a commitment that those regulations would be signed into law by that April, and when they weren't our community was ready to just go and blast them.

I wasn't free to be able to go to Washington and sit in at the Health and Human Services offices down there--or at the time it was not Health and Human Services. I wasn't able to go down to the demonstration, but I was involved in all of the stuff: the preparation for it beforehand, and the planning folks in New York City who were going to go down.


Bonney

Who were the people in New York City who worked on it?


Figueroa

Oh boy. I'm having a hard time remembering who those people were at the time. Judy had already gone on to California; she left in '73, '74. At that point I think it would have been Carr Massi, I think, and Marcie Goldstein, Anna Fay probably, Phyllis Rubenfeld. Phyllis just passed away recently. Freida Zames; I believe Freida was already involved with DIA at the time. My recollection's pretty vague on that one at this point.

As I said, I didn't get to go down to Washington, but I was involved in the demonstrations that we had in New York City.


Bonney

Where were those?


Figueroa

We held those at Federal Plaza. Again, you know that was kind of the place for anything that was related to the federal government that we tried to hold the demonstrations. So we had demonstrations down at Federal Plaza.


Bonney

Did you take over the building?


Figueroa

I was not part of a takeover of the building, and I think there was a take over of the building though, I'm trying to remember. Yes, I think there was a takeover of the building at the time, but I wasn't able to participate again. That was when I was working and then couldn't. That was my restriction.


Bonney

This is all while you were at Xerox?


Figueroa

Yes, I guess it had to be. It must have been while I was at Xerox. I truly can't remember now whether it was while I was at Xerox or Long Island University, but either way they weren't going to allow me to take off for taking over buildings. But I did take off to go to the demonstration. I knew I just couldn't get arrested. [laughter]


Disabled in Action and the deinstitutionalization movement

Bonney

A little bit more about DIA. Would you tell me how it defined its community?



27
Figueroa

DIA had a very broad perspective of who the disability community was. We had coalesced with folks from Willowbrook [Willowbrook State School]. Willowbrook was, of course, the institution that had housed people with developmental disabilities for years, warehoused them, more accurately, until they were exposed in the early 1970's. I guess it was around '73, because I know Judy was still in town and I was still--that was my early days that we were involved with them and there was a parent coalition of people who lived in Willowbrook, as well as attorneys and doctors, and people like Bernard Carabello. Bernard was the person who had befriended Geraldo Rivera and helped to expose what was going on in Willowbrook.

We were part of that coalition; it was called PAC, Parent and Advocacy Coalition, I think, or Parent and Advocate Coalition, and that was all about deinstitutionalization. So we were very involved with promoting the deinstitutionalization movement of people with developmental disabilities. DIA probably had mostly people with physical disabilities in it, mobility impairments, but there were also people who were blind who were involved in DIA. The blind movement had already been around for a long time, so there were other organizations.

We always had a very broad, I think, perspective in terms of disability in that we needed to be as inclusive as we could be, try to include as many people as possible. We knew alone we weren't going to accomplish anything, and so our effort was always to reach out as much as we could.

I can't say that we were very cognizant of the mental health community at the time; I don't think we were as open there. I'm sure a lot of it had to do with our own narrow-mindedness, or lack of knowledge, I should say, about what it meant to have a mental health disability. People with mental health disabilities weren't organized themselves, obviously. Certainly there was no such thing as a mental health pride movement. Many were locked away or embarrassed to even talk about it.

But we also were very aware of people with epilepsy and other hidden disabilities. We talked about that a lot and tried to include people with other types of disabilities. That was true on the college campuses as well, that we were pretty open. But I would say that the community that we really left behind would be the mental health community at that point in time. I don't think we were aware enough.


Bonney

How was the DIA successful in getting these groups to work together, because historically they don't work together that well on issues, because they have sometimes conflicting needs, wants, or whatever?


Figueroa

I don't know if they were successful in sustaining the coalitions, but, again, I'm going to say a lot of it had to do with personalities. Judy Heumann's involvement with parent organizations, because her mother was so involved with parent organizations, she had a connection that a lot of us didn't have. She had a different perspective: she was a teacher, she was meeting people on different levels and I think that that really helped to bring different groups of people in. Because I'm not sure that we would have been as open if it wasn't for that, quite frankly. I just don't know that we would have been. I don't think we would have made those connections to do that.


28

After Judy left DIA, and after some of the original people left DIA, it certainly changed its perspective. I think that because of its reputation there were already connections made and some people still stayed involved. But it became less of a broad coalition than it was at one point, at least not when I was involved.

We had Wolf Wolfensberger at a conference that DIA helped to organize and sponsor through this PAC, through this Parent and Advocacy Coalition. That was in 1973. That was really early on that those types of activities were going on with DIA.

I don't think you can take away the impact of the certain personalities, personas, that were there like Judy Heumann who just was a fireball. She was just out there. She was aware of everything that was going on, it seemed like. She still is; she's this wealth of information always. She just was on top of it. She had pulled in some really tremendous people including these attorneys that were very interested in deinstitutionalization and the Willowbrook lawsuit, et cetera, who were involved in that.

Bill Bronston, Doctor Bronston who was--it was at Willowbrook and who was very active in this PAC. We used to meet in an attorney's office of this guy Michael Levy who was an attorney in Manhattan. That was where these meetings took place. It was just a really progressive group of folks.


Awareness of disability rights

Bonney

We know now that we've lived through an independent living movement, or a disability rights movement. When did you realize there was a movement?


Figueroa

Probably all around this time in '72 when I first got exposed to it. Prior to that, as I said, when I was in high school I resented like hell having to be with other peoples with disabilities and saw it only as a negative. It wasn't until I got to college and realized the impact that people could have by coalescing, by working together, that I realized that we were part of a bigger picture, and that we could have this tremendous impact on the world. So it was in '72, I guess, when I started in college. It was this amazing enlightening experience for me. I could never regret my college days even if I never became an accountant or anything. It was something that really opened my eyes to what was going on around me.


Bonney

What does independent living mean to you?


Figueroa

I guess it means being able to participate fully in the community and in society, in every way possible. Not just being able to work or live in a community, but to actually be part of the fabric, to be part of the government, to be part of the activities that happen; not to feel like you're an add-on, or something, sitting on the sidelines watching, but to actually be part of all of it. That's what it means to me.


Bonney

How is it different from disability rights? Or is it?



29
Figueroa

I don't think they should be different; I think they should be the same. I think they're different in the sense that independent living gets defined by services that it provides, and disability rights is not about services at all. In that sense I suppose they're different, but I don't see them as different.

I think independent living is part of the big disability rights movement. It's all--it's just one more thing. I guess it is somewhat the service component, but shouldn't only be service. I just see it as part of that whole big picture of disability rights, and that we need to continue to promote people with disabilities as being equal to other people, and not second-class citizens; not having to sit on the sidelines and watch the world go by.


Job at Mayor's Office for the Handicapped

Bonney

Let's move on to your involvement in NCIL because that's a big part of your life. So you went to college, you graduated, you went to Xerox, then you went to LIU and worked in the disabled students program.


Figueroa

I was there. I went to NYU and worked at the New York University's disabled student's office, and from there to the Mayor's Office for the Handicapped--at the time that's what it was called--and I was their first 504 compliance officer. I provided technical assistance to the other city agencies on 504.


Bonney

How was that?


Figueroa

That was quite an experience. We had some people who were willing and open to hearing what I had to say, and there were many who wanted nothing to do with disability access, or rights for that matter. I provided training to all of the personnel officers and the human rights people within the city on how to comply with 504. It was quite a challenge.

Probably the biggest challenge though was when our mayor decided to do a complete 180-degree turn on an issue related to transportation. The ADA promoted a multi-modal transportation system, and when our mayor at the time, Mayor [Ed] Koch, was a congressman he promoted that concept in congress--did I say ADA? I meant 504, I'm sorry. That shows you it's been so long. He had supported the regulations for Section 504 of the Rehab Act for transportation and had made public statements about multi-modal being the best way to provide transportation: that you can't just rely on a para-transit system, that the busses and the subways needed to be accessible, et cetera, et cetera.

Well, when he became mayor, and he realized he might actually have to implement that, he changed his mind a lot about it. Here I was, the 504 coordinator for the city, or for the mayor's office, and I had to provide information on accessibility and the mayor's position sometimes on these things.

I found myself having to walk such a fine line, quoting him when he was in congress, but not trying to state how he didn't really want to promote the city's responsibility. He wanted the MTA [Metropolitan Transportation Authority] to have to provide para-transit


30
and that was it. He did not want the New York City Transit Authority, who did all the busses and stuff, to have to buy accessible busses.

I remember being interviewed on public television. I don't even know how the interview came about. I guess my boss was asked to do it, and he asked me to do it instead. This was my first attempt at having to be extremely political, or do this really fine line, and they kind of teased me afterwards and said that I sounded like I was running for office because I kind of never answered the question about the mayor's position on accessibility.

The MTA was, of course, fighting having to do any accessibility at all, and said it was all the city's responsibility; and the city was saying it was all the MTA. When the interviewer asked me about the mayor's position on this, or, "How do you feel about the fact that the chairman of the MTA says that the city should do this?" I was like, "Well, although the mayor has supported in the past a multi-modal system," I said, "The mayor has always supported a multi-modal system of transportation." I said, "Para-transit might be able to provide some accessibility for some people, but that doesn't negate the MTA's responsibility to comply with the law." I just kind of skirted the issue as much as I could.

I realized I was walking this fine line all the time and just wasn't comfortable with it anymore. I was very much pro-multi-modal transportation, full accessibility, and didn't want to be sitting there trying to explain the mayor's position on anything, for that matter, or at least now that he had taken such a different position, or was in the process of doing that. I never got into trouble for saying it because I kind of threw it back on the MTA and their responsibility, and never really committed him to anything; but I could have gotten myself into plenty of trouble there. People did watch the public television. People in the city did watch it. Like I said, I knew I was walking a fine line.

I was approached by the Eastern Paralyzed Veterans Association to work for them. They were in the process of suing the city and the MTA for accessibility, to purchase busses, and to make the subways accessible. When they asked me to come on board as an advocate I said, "Sure," even though it was a pay cut. I was notorious for leaving jobs for a pay cut because it was something that I wanted to do, so I did. I worked for them for the next three years until we moved up here to Albany because Pat took a job with the state.


Mobility Through Access and the MTA

Bonney

This is what year now?


Figueroa

That was in '85. He came up in '84 and I came up in January of '85. I worked for EPVA, and probably would have still been working for EPVA if I stayed in New York City because I just loved it. I was an associate advocate. I worked with Terry Moakley and Jim Weisman. Jim was the attorney on the lawsuit against the MTA, and I was involved in helping to organize the community on the transportation issue.

We had organized a group called Mobility Through Access, ironically MTA; that wasn't just a coincidence, obviously, but our MTA was a group that monitored the accessible busses and filed complaints about the bus system not working. We were the grassroots,


31
basically, on this issue, and so it was Mobility Through Access that had demonstrations and that would sit on busses that weren't working, you know, the lifts. They had a few busses in New York City that had lifts on them, but they weren't maintaining them; they weren't cycling the lifts; they were doing everything they could to sabotage it.

They were supposed to have these busses running on a specific day. It was supposed to start at a certain time, and one of the people who was the director of an independent living center in Brooklyn who was part of this MTA, Denise McQuade--actually she was the assistant director at the time--she actually sat on the steps of the bus and stopped a bus all day. We got the press there.

I was able to do a lot of the behind-the-scenes organizing, and getting people out there, getting information to people. EPVA never held the demonstrations because they were the ones negotiating and doing whatever, but I got to do the organizing so it was just lots of fun, and it was great. We tracked complaints. Because I was working for EPVA I got to participate in the discussions with the governor about transportation, about changing the law and promoting access.

You may or may not know, but in New York state we passed a law, prior to the ADA [Americans with Disabilities Act] being passed, that mandated accessible busses be purchased in New York state. We did that as a settlement to the EPVA lawsuit based on Section 504 of the Rehab Act, and based on state building codes which required that facilities be accessible when they're renovated, and the subways were designated as a facility in the public building code. The state was going to lose on that lawsuit, and if they didn't negotiate a new thing, a new settlement on that, they were going to lose big time on the subway part of it.

Not on the busses, the busses we got added on. We got a law passed in New York state that every bus purchased after a certain year--and I can't remember what year that was--that every bus had to be accessible. So we got that passed prior to the ADA being approved.

I had moved to EPVA, and like I said, I probably still would have been there if it wasn't for the fact that we moved up to Albany. But that gave me an opportunity to work in an independent living center, which I was certainly very personally familiar with because Pat ran one for five years.


Opens Troy Resource Center for Independent Living

Bonney

This was the Troy--?


Figueroa

No, the first one was the Capital District Center for Independence, which is across the river in Albany. I was hired as a project person; they were going to put on a conference. I had literally just moved up in January. They were doing a technology conference and needed somebody to coordinate it, and had done no work yet in March for this thing that was going to happen in June. I came on to do that project, and then the director at the time, Debbie Hamilton, she was already planning on leaving. They had hired an assistant


32
director, Michael Sullivan, who honestly had no familiarity with independent living. He was a person with a disability, but the board had hired him as assistant director and offered him the job as director. We managed to work together, but that was pretty much it. I'm sure he saw me as this radical from New York City who took over buildings and whatever--which we did in New York City. It was a big contrast for me, moving up here and working for them. But he did hire me as the manager of programs and services when he took over as director.

I worked at the Albany Center until '87, I'm sorry '86, when there was funding that came out for an independent living center in Troy. Mike was already gone at that point. There was a new director at the Albany Center, Todd Eggert, and Todd and I talked about it, and he knew I was interested in running a center at that point. I guess I was aware that I was perfectly capable of doing it by then. I had enough confidence in myself. He agreed to have the Albany center apply for the funding to start up the Troy office, but it was with the understanding, because it was part of the agreement, that it went for the money, it was state money for this, that you had to spin it off within eighteen months, so we knew it would be a free-standing organization.

So that's what we did. I wrote the grant proposal with Pat's assistance. We wrote the grant proposal. We got it funded. We started. The doors opened here in November of '87, and that's when I started as the director of this center.


Bonney

And this was called the Troy--?


Figueroa

It was the Troy Resource Center for Independent Living. It was focused mostly on Rensselaer County, Troy, being the city here in Rensselaer County here, the main one. We had also included in it some services in Columbia County which is south of us, about forty miles south, because there were people who were needing services there.

We started with four people. I took one of the people from the Albany Center with me; Todd wasn't very happy about that. Karen Garofallou at the time she was Karen Trombley. Karen was just tremendous because she had these great communication skills. Both of her parents are deaf. She's not a person with a disability, but both of her parents are deaf, and so she's fluent in ASL [American Sign Language], and was a certified sign language interpreter. She had been working at the independent living center in Albany doing three things: one was providing services to deaf consumers, housing, and independent living skills. So they were all just these really key things that were great for us to start with somebody with that much knowledge.

She was born and raised in Schenectady so she had knowledge of the community, although she didn't know Troy really well. She had consumers over here already. So she was a great asset. She wanted to leave there and we clicked, and we have been working together ever since. She is now our director of programs and services. She's just really a neat person. It's been great.

Then I hired a secretary who is still here, Barbara LaFontaine, who was our secretary when we opened. We had an advocate. That's how we started, with the four of us. Sue Meineker was our advocate, and she left only three years ago for health reasons.



33

President of National Council on Independent Living, 1991-1995: gender issues in leadership, initial funding


[Tape 2, Side B]
Bonney

We want to launch into a discussion now about NCIL. Could you tell me what NCIL stands for, and what is NCIL?


Figueroa

NCIL is the National Council on Independent Living. It is a membership organization of independent living centers. They also have individuals as members and supporting organizations, but it's primarily independent living centers that belong to NCIL; kind of like a national association, if you will, of independent living centers.

Its purpose is to fight for, or to promote, independent living as organizations; to promote the funding of independent living centers, as well as to promote disability rights.


Bonney

When did NCIL come into being?


Figueroa

NCIL, I believe, was formed in 1985. I joined the NCIL board in 1988, so it had been around for about three years. Maybe it was a couple years before that, actually. It probably was 1982. It was '82 when NCIL was formed.


Bonney

Why was it formed? How did that come about?


Figueroa

There had been a bunch of directors that had been at a meeting together back in 1978. I guess periodically they were pulled together with federal money for different training programs. There was a recognition that there was a need to coalesce together, to work together, for funding for the independent living centers.

The first funding for IL came out in '78, and that was really when the first national meeting was formed of independent living centers that I recall, that I attended in Houston. Some of the directors, Marca Bristo, who was from Access Living in Chicago; Max Starkloff, from Paraquad; June Kailes, I think may have been the director out in Los Angeles at the time. There were a variety of people: Marcie Goldstein, actually, who now lives down in Washington, but Marcie was on the first board of NCIL. There were people like Eric Griffin--I forget names. I don't think Fred Fay was involved at that point. John Chapel, that's who it was, John Chapel out in Massachusetts. They all had joined forces. They had been meeting at different places around the country, informally, or at formal training sessions.

At the informal times they would sit down and talk about the need for a national organization so that we could promote independent living nationally, that we needed to be able to make changes, and those changes needed to come through independent living and through some formal type of organization. That's how NCIL was born.

I was not one of the founding members of NCIL. I don't even know if Michael Winter was a founding member. He was the president just prior to me. I was the forth president of NCIL, prior to me Max Starkloff was the first; I think he served for two years. Marca


34

Bristo served for three. Michael Winter served for two. Then I became president of NCIL.

I joined NCIL in 1988 as a regional rep. I was a regional representative, which meant that my assignment was to try to organize people in the New York, New Jersey region, keep them aware of what NCIL's activities were, to try to disseminate information about legislation that was pending that we thought was of interest to the disability community, and to obviously try to develop membership--that was the other part of my job.

I was asked to be the regional rep when someone couldn't serve from New York. I had just become the director of the center here in Troy. Actually, it was probably '87; I probably wasn't even the director yet. We were just opening up this office; we were setting this up. That's when I became the regional rep, and then the following year became the chair of the regional rep's committee.

There were ten regions NCIL broke up in terms of structure. They had a president, two vice presidents--one internal, one external--a secretary, and treasurer. Then they had the regional representatives. That was supposed to be their link to the community to make sure that they stayed on task in terms of what the needs of the regions were. So they broke it up into the ten federal regions.

We're in region two, so we cover New York, New Jersey, Puerto Rico, and the Virgin Islands. I never got to go the Puerto Rico and the Virgin Islands, unfortunately, but I did go to New Jersey. [laughter]

Like I said, I joined in '87. NCIL was still a forming organization. Marca Bristo was the president at the time that I joined NCIL. She had been part of basically the women's push within the organization to kind of take over leadership the year that she became president. Prior to that it had all been run by the men, so the women got together and decided it was time for the women to run NCIL. They put Marca up as a candidate, and Marca won, and quite a few other women won.

The only male that was on the board at that time, on the executive committee, was Michael Winter. He got to be the token male. Duane French may have been on for one year too, at that point, but it was mostly being run by the women. Then Michael ran for president when Marca had done three years as president.


Bonney

Let's talk about this. Was NCIL a male-dominated organization? Was there friction between the men and the women? What was going on there?


Figueroa

Yes, I think it was a male-dominated organization.


Bonney

Because the IL directors were male, mostly?


Figueroa

A lot of the IL directors were male. A lot of IL directors were male at that time. Most of the people who worked at the centers were women, but a lot of the directors were men. There were women who were leaders, certainly, and who had been leaders in the disability community prior to that: people like Judy, people like Marca, and others who in their own right had been leaders. I think they just weren't going to sit by and just kind of watch the men take over an organization that they felt that they could just as easily lead.


35

Not being around I can't really say exactly what was going on, but there were some very strong women in NCIL, and I think they just didn't want to see another good-old-boy network get set up where they weren't part of it.


Bonney

What are the funding sources for NCIL? How did it get its money to form?


Figueroa

When NCIL started they got some money from the Mott Foundation. The Mott Foundation funded NCIL for, I believe it was for three years, or at least that's when Marca Bristo had taken over. I know they had their funding from Mott. Prior to that there wasn't any real organization, other than people belonging and maybe paying membership dues, but there was no office, no set-up at all. The president pretty much ran everything out of their office, and the board met periodically in person at their own expense.

The Mott Foundation came in with a grant, seed money for NCIL and for the New York State Association of Independent Living Centers, and they funded both of them at the same time for three years. That was to provide the seed money for developing the organization, getting set-up, and to help them get other grants and other funding sources.

When I joined NCIL in '87 they were in their second year of the Mott Foundation grant, I think. They had an administrative director, Maggie Shreeve, who worked for Marca Bristo out of Access Living in Chicago. So Maggie was there to write grants, she was there to keep people informed, get minutes out to people, really kind of run the administrative piece of it, answer questions, doing a lot of I&R [information and referral] to the centers. They were trying to develop mentorships for directors, creating opportunities for other center directors to learn from previous directors. I think they had gotten a small minor grant or something for that, to do that, RSA [Rehabilitation Services Agency], or NIDRR [National Institute on Disability Rehabilitation and Research], and I truly don't know which one it was. Maggie and Marca could explain that stuff better than I could.

But that was pretty much how they were funded: it was membership dues, it was that [grants]; they really didn't do a lot of fund-raising at the time. Like every struggling organization you're just trying to keep it all together.

They had already been successful in the sense that they were already being recognized as an organization that was representative of some of the independent living centers at least. There, at the time, NIDRR used to fund a national conference on independent living that NCIL, National Council on Independent Living, helped to give some advice for, but it was run by the University of Kansas; we didn't have any control over the conference.

That was a place where NCIL had time on the agenda of that conference to do workshops and things. What would happen is the NIDRR-funded piece of it, the University of Kansas would do their conference, their training workshops, and, you know, they would get people in to talk about fund-raising, and management, and all the blah, blah, blah issues.

Then NCIL was running all the advocacy stuff, the piece of it that was all the advocacy workshops. What would happen is our stuff would be overflowing. People were really, really interested in the advocacy, and not quite so interested in the other day-to-day stuff.


36

You had the people who were interested, but those were the very people that we were trying to get to change their ways.


Three independent living models

Figueroa

You have to remember that when independent living centers started there were three different models for independent living. They weren't all the Berkeley model where they were consumer run, community based.


Bonney

What were those three models?


Figueroa

Those models--the pilot projects that were funded for independent living included a transitional living facility, which was the Houston model.


Bonney

That was ILRU [Independent Living Research Unit]?


Figueroa

That was ILRU's model. That was the transitional living model. There was this Berkeley model, and then there was the state VR [Vocational Rehabilitation] model.


Bonney

What was the Berkeley model?


Figueroa

The Berkeley model was what we traditionally look at as independent living now. That's the one that survived, which is that it's run by consumers; the board of directors are consumers; that it's community based; there's no housing provided; it's not segregated; and it has the core services of peer counseling, advocacy, IL skills, and information and referral. That's what we, at least, view as the Berkeley model. I'm not even sure they had all four of those as the core services at the time; I think it was only two of them.


Bonney

And then the third one was?


Figueroa

The third one was a state VR-run model where the independent living money was used by the Voc Rehab agency to purchase independent living services.

A lot of those people who would attend that conference were people that came from those models. They had no clue what the disability rights movement was about; they didn't know what advocacy was about. That's why we still have centers today that have no foundation, no roots in independent living. When we got the Rehab Act to be changed, in--.


Bonney

Seventy-eight?


Figueroa

No, that wasn't the '78--the '78 Amendments is when they were funded for the first time, right. I think it was in '87, or '88 I want to say, that the amendments got passed that required consumer control and required the--it wasn't until pretty late in the game that we got those things changed--and required those state VR-run programs to become independent if they were going to continue to get IL money.


37

As a result we have people who have been doing independent living for years but don't know what independent living is. The name independent living has just been used to describe everything from housing to whatever, and it's because it really did start out in some places like that, as anything. But at any rate, there were those three models, and a lot of those people that attended the conference were from there.

NCIL tried to use that conference to energize people, to get them pulled in on the issues, do a lot of caucusing on the side, and meetings on the side. When the University of Kansas, or when NIDRR no longer decided to fund that conference, there were a lot of people who figured that's the end of that, that's not going to happen. We [NCIL] took a risk. We said, "We really need to continue this, but we're going to do it our way." We started off with just a couple of days of workshops but they were all around advocacy.

It has now grown back to this huge conference now, almost 650, or close to 700 people who were at the last NCIL conference. It's strictly run by NCIL. They apply for foundation support, or whatever to get underwriting of the conference, but it's strictly run by NCIL and we control the program, we control the agenda.

I'm no longer on the NCIL board but still definitely identify with that, and that whole conversation about what to do with that conference. We were really struggling with the University of Kansas at the time, and trying to take charge of that agenda.


Bonney

Why did the University of Kansas have that conference?


Figueroa

There were people with disabilities that they had hired. Jim Budde had hired Glenn White. Although Glenn's a good guy, you know, I can't say anything bad about him, their focus was research, you know. Their focus was research and they had the R&T Center, the Research and Training from NIDRR, so that was how it happened that they had the money from the conference, so that was part of their IL. I never get it straight. ILRU had one of the research and training centers on independent living management and University of Kansas had another one, and then there was a third one out there that I don't remember. Oh, I guess it was WID, the World Institute on Disability, had some piece of independent living, the R&T center, PAS. Their's was focused on PAS [personal assistant services]. Now it's all consolidated into one. There aren't three different projects out there, but at the time there were three.


Bonney

These three different types of ILC's that we were talking about, the ILRU still survives today.


Figueroa

Yes, but the Independent Living Research Utilization Project, which they are now, doesn't do independent living. Their program for independent living was called New Options for Independent Living. That still exists, not as a housing--


Bonney

And that was a transitional living center?


Figueroa

Not any longer. I don't believe it's a transitional living program anymore. I don't know for sure, but I'm pretty sure they're not transitional living because I think they are a full-blown independent living center now, so they can't have a transitional living component of it, that I know of. At least not a residential component.


38

Their thing was that people with disabilities, particularly for newly disabled people, that they needed a transition from the nursing home or the rehab center out into the community, and they wanted to keep their transition program. There's definitely merit to it, keeping it, you know, I think no more than six months to a year. It was a limited amount of time.

The fear for many of us who were out in the disability rights community was that the focus would get put on building transitional living, and that there was still no focus on getting accessible housing for people. The transitional living would end up having to become the de facto place that you lived because there was no alternate places to go, and that we would end up creating our own ghettos. That was what the objection was of many of us in New York and in California, probably primarily in New York and California [laughter], that we objected to that, and fought that pretty hard.

What won out was the Berkeley model, and that was what NCIL promoted. NCIL adopted that as their model for independent living when they were formed, which also created controversy because it meant then that those other organizations that were doing these other things couldn't belong to NCIL.

NCIL had a very rigid admission policy at the time. To become a member of NCIL you had to really prove that you were consumer run, consumer directed, and not residential. You had to show your bylaws; you had to go through all of it. And to this day you still either have to present your bylaws or show that you are federally funded as an independent living center because now you have to meet those standards on the federal level, but you didn't at the time. NCIL was a driving force in changing those regulations for independent living centers, and changing the law.


Bonney

What are the requirements, again, to be an independent living center?


Figueroa

To be an independent living center you have to be a free-standing, not-for-profit organization, with a majority of your board of directors, or at least 50 percent--I think the federal law says 50 percent of your board; no they changed that, it's 51 percent of your board--has to be people with disabilities. The majority of your staff has to be people with disabilities, and the majority of your upper-management has to be people with disabilities.

You have to provide four core services, which is: systems and individual advocacy, peer counseling, independent living skills, and information and referral. Those are your four core services. And non-residential--you have to be non-residential in order to be eligible for funding under independent living.


Moving NCIL headquarters in Washington, DC

Bonney

My understanding is up until you got the presidency of NCIL that the NCIL home base was the president's home. Whoever was president, that's where NCIL was for that length of time. But under you, you got it moved to Washington. How did you do that?



39
Figueroa

There was an RFP, request for proposal, that was coming out in--that came out in 1990, right after ADA [Americans with Disabilities Act] was passed--1991. I guess, early '91 it probably came out to compete for ADA technical assistance training grants. NCIL had put together a team--and that was under the leadership of Michael Winter, just before me--had put together a team to compete for this grant. We knew we needed to make that a goal. I'm pretty sure that was--or was I there? Maybe I was president, actually. I think I--yes. Because ADA passed in '90, July 26, 1990, so those RFP's couldn't come out that fast; it had to be the next year. It was the next summer that they came out and I was already NCIL president. I was trying to remember. Bad memory here.


Bonney

You were NCIL president from '91--


Figueroa

From '91 to '95, right. I was four years, and actually the first person to serve four years in that office. I wasn't sure I even belonged there. The first year I ran. I must have been completely out of my mind running again, but by the time I got around to my second term I actually knew what I was doing, so I felt like I needed to stay.

What happened was just before I became NCIL president we had already had a plan in place; we wanted to move to Washington. We were trying to scrape up whatever resources we had, money left over from membership dues, and what little we had left of--I guess the Mott Foundation grant had already just run out at that point. We were looking for dollars to try to open up an office in Washington and had gone through a search process.

I offered the job to somebody to become the NCIL executive director--this was all just before I was to take over as president--and the person backed out of the thing knowing that they were going to have to spend most of their time doing fund-raising in order to maintain their job. We said, "Okay, let's take what resources we have, try to put it into putting together a good grant, let's get this ADA Technical Assistance grant off the ground, and see where we go from there." We went for that and competed successfully. We got the ADA Technical Assistance grant to do trainings around the country along with DREDF, Disability Rights Education and Defense Fund.

We hired a person in Philadelphia. The person was living in Philadelphia, so we decided, "Okay, she can work from there. We don't need to necessarily have her move any place." We started up with that, but then I was very interested and another board member too, Kathleen Kleinmann. I mean, we were all very interested. Every time we did a strategic planning session we talked about wanting to move NCIL to Washington. We sat down at a strategic planning session in Massachusetts, held at the Independent Living Center of the North Shore. Laura Lee Stewart was on the board of directors at the time; she was the external vice president. Her role was to do the advocacy piece, you know to work with the committees, to do advocacy out in the community, or out nationally. Laura Lee hosted us that day and Gina McDonald, who was on the NCIL board, agreed to serve as a facilitator.

Out of this strategic planning session, I think it was Kathleen Kleinmann who said, "How can we use this grant that we have now to make this happen?" The two of us decided, really, I mean we really said, "You know, what we think we need to do is to take this person and instead of having them coordinate the training, what we need to do is see how


40
we can evolve that position into an executive director and use the money from this grant to help pay for that."

That's really how it happened. It was just out of this strategic planning session, we floated it to the board members who weren't there. We got a little squawking because we had, instead of going through a normal process of hiring an ED, we were picking a person who we had hired for something else to do it. There was still a level of trust, I think, that hadn't been built up yet. But Anne Marie Hughey, who is the current executive director, and who I knew because she had been the director in Batavia, here in New York, so I knew her from New York. Kathleen knew her from Pennsylvania because she was working at the independent living center in Philadelphia there. We just thought that she could really grow into the job, and frankly I think that she has. I'm sure there will be criticisms no matter what. There are of all of us and the way we do things. I've never regretted that decision. We did that by the next year and we decided we would just open the office in Washington and that's what we did, and from there did fund-raising to try to support it. We had already taken over the NCIL conference which was starting to become an actual moneymaker for us, and grew the membership.

When I started as NCIL president I think we had 87 member organizations, and by the time I left there were about 120, 130 member organizations; so we had grown quite a bit in that period of time, and NCIL has grown even more since then.


Bonney

What is it now? How many members now?


Figueroa

You know, I don't know. I really don't know how many there are because with the increase in federal funds to independent living, and the changes that have finally taken hold in terms of requiring consumer-controlled organizations, I think that it has grown more, but I would have to go look at my NCIL roster to even know. I have no clue, but it is certainly much larger than what it was when I left.

We used that time and took advantage of the opportunity that was there, with the grant, to just grow from there. What NCIL did, at that point we put together a development committee. We were all committed to seeing it grow. It certainly wasn't me alone. Everyone was committed to seeing this organization really develop. So we put together a good development committee and we held NCIL fund-raisers, annual dinners we held, and made some money off of them for a few years. After I was president, I think we did it only one more time. We had only done them probably three or four times altogether, you know, before I was president and then after. Then NCIL has moved on to doing other types of fund-raising activities which I can't really speak to because I'm not on the fund-raising committee. I'm on the finance committee still for NCIL. I do serve on the finance committee.


NCIL budget and fund-raising

Bonney

What kind of budget does NCIL have now? How big of an organization is it?



41
Figueroa

Oh boy, you would ask me that question of course. I want to say about 1.2 million. They're probably about 1.2 million. It's a good size organization now. We've diversified the grants is what has happened. It started out with ADA technical assistance which now no longer even exists, but there have been other training grants that have come in, other funding opportunities that NCIL has pursued so they have created other positions. Then the membership dues can focus on the advocacy efforts that NCIL engages in. Their regional representative system has truly grown.

Kathleen Kleinmann became the regional rep chair eventually there, and she did a great job with organizing people in the regions and that has obviously moved on to other people since then, but--



[Tape 3, Side A]
Bonney

You mentioned fund-raising a couple times, and I was reading a little bit about NCIL and it said it was able to raise $10,000 in the year 2000 for its fund-raising activity. That doesn't sound like a lot of money. Is it really hard to fund-raise for these kinds of organizations?


Figueroa

It's extremely difficult to raise funds for these organizations because people who will donate to you generally want to donate for a program or a service; and particularly for an organization like NCIL that doesn't provide direct services, it's very difficult to raise money. You're asking people to give you money to do stuff that they don't necessarily see the impact of.

You're right, $10,000 is not an awful lot of money to raise for a national organization. They probably got a lot of that from donations from people who either work in independent living centers, or from directors of independent living centers who were able to make an extra donation to NCIL from their organization for the advocacy efforts. They have an advocacy fund and that's essentially how they pay for it, is just asking centers to commit funding to do the advocacy.

They have gotten some grants, or foundation money, but most of the foundation money is to either put on a conference, or to run training programs--technical assistance management type training programs--for directors. That's what people are willing to pay for; they don't want to pay for the advocacy. That's really hard.


Bonney

Or the supplies, or the expenses.


Figueroa

Or the supplies, or the expenses, the administrative stuff, that's right, that's right. The tactic most of us used, even as just center directors, is that you end up being put in a situation where you have to raise money, mostly by going after grants and contracts to do specific tasks, and then you hope that you can build in enough administrative costs there to cover all of your expenses so that then whatever other resources you get you can devote to advocacy. But it's certainly not the majority of money that comes in that gets to go to that.



42

More on presidency of NCIL

Bonney

So how did you become president?


Figueroa

[laughter] I had already served on the board practically from the time that I joined. I said I was involved with NCIL as a regional rep in 1987. That was the first time that the regional reps served as members of the board of directors. I was elected in the region, more or less, because no one else would do it. It wasn't because I was so popular; [laughter] I was the only fool who said yes. So I became the regional rep, joined the board.

I knew a lot of these people for many years. For me, I guess the advantage I've had is that even though I wasn't the director of the center from very early on--I've been here for fourteen years now, but I have been here since the centers were started--I have been around all the leaders of the independent living and disability rights movement for so long that I'm a familiar face and a familiar name, even when I wasn't leading the pack. It was a very easy transition for me to get involved. I didn't know Marca, but I knew Michael Winter; I knew Judy Heumann; I knew all the people that were in some way involved with NCIL. Denise McQuade was on the board. She was, I believe, the external vice president for NCIL at the time. She was one of the people leading the charge on the ADA when the ADA was being advocated for, at that point.

It was a relatively easy transition for me to get involved with NCIL, and of course this stuff is my passion; I enjoy doing this kind of stuff. Michael Winter had been president. When Marca left, after the third year, I guess you could only do two terms as NCIL president. The first year she did a two-year term, or maybe they were three one year terms and at the time then the by-laws were changed and you could do two two-year terms as maximum NCIL president, so she had already two terms. She was going off the board, and Eric Griffin at the time, I guess he was one of the vice presidents. I'm not sure what role Denise McQuade was playing at the time, but she might have been the other vice president, but Eric was definitely one of the vice presidents and Michael Winter was on the board. They were competing for the job of president and Michael had approached me and asked me to support him. All of us from New York supported the California guy, you know [laughter] against the Massachusetts more conservative guy, so we ended up electing Michael as president of NCIL at that point. That was in '89. I served on the board. I was an original rep chair for that whole time.

When he was leaving the board after two years, he decided not to run. I don't know whether he had the energy, or support or whatever to do it, to continue it, but there was an automatic assumption that this other guy was going to run for the board again, you know. I had, at that point, been working with Judy Heumann and Marca on the search committee to hire a new director. I had been very involved in doing all these things, and you know it was starting to aggravate me, I guess, is what happened. I started thinking, "Wait a minute now, all the guys are going to take over. We are going to put all of this energy into getting somebody and doing all this and then--you know." It was kind of a, I guess, a competitive thing is what happened on my part.

So I talked to a few of the women and they all said that they would support me. It wasn't my intention to run; I wanted to get one of them to run, but none of them wanted to do it,


43
and once again I was the fool who said yes, so I ran for president and won by a very slim margin. It was a pretty close vote, but I'm friends with the person that I ran against, Duane French. He was very supportive, actually, after that. He's a good guy. I just had said to everybody: I knew that I was a hard worker and I would work to make sure that we got to Washington. Of course at the time I knew we were hiring somebody, so I thought, so I didn't expect the job to be the intense thing that it was either. I had no idea that it was going to be at least a year and a half of running it out of this office and trying to be the director of two organizations at the same time, so it was a lot of work. It was a lot of work.


Bonney

How did you get it to Washington? I mean, you've got this person.


Figueroa

We got this person. We just made this decision that instead of renting space that we were going to use some of the grant money to pay for rent, is what we were going to do. We used the grant money to pay for the rent, and we were going to do it out of Washington and look for other resources at the same time.


Bonney

So this person had to move to Washington?


Figueroa

Yes, she helped us find space because we already had her hired in Philadelphia. She was willing to move to Washington, and had family near by, so it was an easy transition for her. That was basically how we did it.

Once again, I say this all the time: I think a lot of it just has to do with being in the right place at the right time, having things kind of gel. We always had the plan. The NCIL board always had the plan to open up an office in Washington. We were very determined about that. That didn't come without controversy because there was also the fear of becoming so absorbed in the Washington scene that you lose track of what went on out in the rest of the country. It was our hope that through this regional representative system that we would always be able to maintain that kind of connection.


Bonney

Does that work?


Figueroa

I think it has to some degree. It's hard for me to say because I'm not as intimately involved in the NCIL board. From the outside I would say that they have done a great job in organizing, at least in our region; we have a great regional rep and so he has kept everybody well informed. With the age of e-mail and all the rest of it--the world wide web, although NCIL is kind of behind on that one. At least with e-mails, and things like that, it's a lot faster; the information comes fast out to the community, and that's a real positive thing I think.

NCIL has been really successful in getting more funding for IL which has helped to develop new centers and new growth. I think we have over 600 independent living centers in the country now. It's a lot.



44

Involvement in White House politics

Bonney

What were your successes when you were president of NCIL? Other than getting to Washington, that was one.


Figueroa

That was a biggie. That was definitely a biggie.


Bonney

What other things were you working on?


Figueroa

We were working on health care, health care reform, because of, when I was president we had a new president come in in '92--or win in '92, and take office in '93. Many of us, not through NCIL, of course, but on our own had been involved in that campaign in our own way, in our own states, and we knew we had a president that was going to be open to hearing about our issues. We made sure, by calling people, and writing letters. Actually, I got invited to a meeting in Arkansas in December of '92, just before he took office. There was a meeting of disability leaders down in Arkansas with his staff, with President [William Jefferson] Clinton's staff, to talk about what our major issues were, and of course ADA enforcement was a big one. ADA enforcement was a huge issue that we talked about as well as, if there was going to be health care reform, we wanted to make sure we were part of it and didn't get excluded.

So, of course, when he came out with health care reform as one of his major things when he first started, when they came out that September with their proposal, NCIL had a committee already organized and ready to start working with the administration on health care reform. Of course, we were very interested in more of a single-payer plan than what the administration ended up proposing. But I have to say that I think the fact that we were able to get the recognition from the White House that we should be a player, and that we were very much a part of that process, said a lot for NCIL as an organization. That's something that I felt really proud of, that we weren't that established yet in Washington; we certainly had just opened up an office. It's not like we had years of experience there. But we managed to get in at the table just like all the rest of the inside Washington people, you know, and that was a real accomplishment.

It had a lot to do with the players in NCIL who had been part of that campaign and made sure that they were in touch with Bobby Simpson who used to run an independent living center in--I think he ran one in Little Rock. Bobby was really close to the president, and we actually expected that he was going to be RSA commissioner at one point, but I guess he either withdrew, or turned it down, or whatever, they took too long; I'm not sure what the deal was there.


Bonney

What was he?


Figueroa

Bobby Simpson still is in Arkansas, but he was one of the people that was a major contact for Marca, for Judy, for Lex. Well, not Lex; Lex was a different party. He was a person who made sure we had those connections, or helped us maintain the connections. I got to know Bobby during that time because I was NCIL president. He was a great resource to us, and I don't think we would have had the access to the White House that we had if it hadn't have been for his initial push.



45

Independent living, community change, accessible building codes

Bonney

Why is NCIL important?


Figueroa

I think NCIL's important because we need to have that bigger picture. If every independent living center operates like they're their own world, which happens--it can happen very easily--and you don't understand the bigger picture that you belong to, you can just get caught up in worrying about your funding, and worrying about your existence, and not looking at having an impact on changing the world. I just think that we need to always have that bigger picture.


Bonney

Is that the point of NCIL?


Figueroa

I think so. I think it is. I don't know whether the NCIL board thinks so, but it's certainly my view of what NCIL is. I think we have to have an organization like that where we all can join forces to make changes on a broader level, and I'm sure that's what most of the people in NCIL believe.


Bonney

We were talking at lunch about ILs, and how they have sort of changed, some of them have changed over the years, and they have become fewer service organizations. But that's not really what an IL is, in your opinion, right?


Figueroa

No, it's not. It's very easy to fall into that trap because in order to survive most independent living centers do end up pursuing contracts, and grants, and funding from government. What government wants to fund is services. They certainly are not interested in funding advocacy for the most part. It's very simple to fall into that trap, and that's why I think it's important to know your history, and know what you're supposed to be about, and that is community change.

The other tension you have is that the people that come through the door are looking for services. They're not looking for you to tell them about how to write a letter to their congressman, or about changing the law. They need a place to live and they're looking for benefits, and they're looking for a job, and they're looking for somebody to help them because somebody just treated them poorly. They're looking for services, and you do always--it's a balancing act.

I think independent living centers, though, in order to not get--you could never meet all the needs of every individual who comes through your door--so if you don't keep in mind that you also have to change the system while you're helping people, you'll never stop that flow of people that comes through the door. Maybe some people want the security for the rest of their lives if they know that they'll have a job for forever, but I don't think we have to worry about that. I think there will be jobs out there for most of us because you're always having to deal with changing attitudes, and changing laws, and when we forget--.

We have a situation in New York state right now. When I worked for the Eastern Paralyzed Veterans Association back in 1984, or in 1983, we were advocating for modifications of the building code. We adopted this very progressive building code in New York state. That was modeled after California legislation, I will say, that called for


46

100 percent adaptability in all residential buildings--new construction of apartment buildings.


Bonney

Would you just, for posterity, say what 100 percent adaptability means?


Figueroa

Yes. I'm sure it's a term that's going to disappear rather rapidly, especially now. Adaptability meant that every doorway was accessible, it met the minimum accessibility requirements, that you had a clearance of thirty-two inches to get into all the doorways within an apartment unit. That there were reinforcements in the walls in the kitchen and in the bathroom so that you didn't necessarily need to put the grab-bars in now, but if somebody moved in later that needed to put in a set of grab-bars in the bathroom they could do it and the reinforcement would be behind the walls. The work was done during the construction to make this place adaptable for a person with a disability to move into it. In the kitchen, the cabinets were capable of being lowered or removed easily without having to do structural changes. The whole point was to minimize the cost of making a place accessible when you moved in. It was a great idea, and I still think it's a great idea.

In 1984, 1983 I should say, there had been a major fire in Westchester county, which is one of the counties just north of New York City, at a discotheque. The backlash of this awful fire was that there was no uniform fire prevention and building code in this state; every locality had its own code which got enforced or didn't get enforced based on the building inspector. There were hundreds of people who died in this fire; it was just a horrendous discotheque fire. There weren't enough fire exits and the whole bit.

There was a push to get a uniform fire prevention and building code. That was our opportunity as the disability community, if they were going to institute a statewide code, that we make sure that the accessibility provisions were good in that code.

So EPVA, Eastern Paralyzed Veterans Association, who I worked for at the time, advocated to be part of that process. There was a committee set up in 1983 to develop the accessibility portion of that code, which did get adopted, and which ultimately required that in every newly constructed residence in this state--apartment dwelling with an elevator, that 100 percent of the units had to be adaptable; and that in garden-styled apartments where there was going to be no elevator that 25 percent of the units had to be adaptable.

My reason for talking about this is that here we are, twenty years later, or almost twenty years later, and the New York Department of State, that oversees the building code implementation, is in the process of adopting an international BOCA [Building Officials Code of Accessibility], the international building code, which supposedly has some wonderful advantages in terms of uniformity, in terms of fire prevention, et cetera, et cetera. But when it comes to housing, requires that only 2 percent of the units be fully accessible, and that the other 98 percent be--there's another term: meet a lower standard of accessibility. So they, in theory, are creating these "accessible" [quotes indicated] units. They're saying they're 100 percent accessible, but only 2 percent of them meet real accessibility requirements and the other 98 percent meet some lower standard, a lot lower standard. The lower standard is that yes, you can get through the doors, but you don't have clearance spaces for turning; you don't have the turning radius in bathrooms or in kitchens; you don't have the adaptability behind the walls, or the ability to remove the cabinets.


47

Our community, the disability community, hasn't had to deal with this in so long that they don't even know what to do. We got caught off guard. EPVA was on this committee to make recommendations and thought, for sure, they were going to be able to convince the codes council to retain that part of the building code when they adopted the international BOCA. The builders had organized to fight it, and we weren't prepared as a community to fight it. So we just had a building code council meet this past month and voted not to include the lower standard, as far as we're concerned.

Now we have to go to public hearings, now we have to go to regulatory review and we have a governor whose attitude, and his regulatory review committee's attitude is, "Why should we do more than any other state? We should only do what we have to do." Their attitude is, "We don't have to do this higher standard, and the builders are claiming"--which is totally outrageous--"that it's costing them so much more money to have to do this." But we all know that that's not true in construction, but we've been caught off guard. This is what happens if you don't have an organization out there, or if you're not organized enough, and you don't remember your history, and you're not involved with doing systems advocacy. We're all off doing our services and referring people to housing, but that housing's not going to exist when they change the building code! Twenty years from now there will be no housing for people with disabilities. The few that are available are going to be occupied by people, and you're not going to be able to find housing.

It's just a horrible situation, and I guess that's why I strongly see the need for centers to maintain that systems advocacy, maintain their history, understand where they came from, and understand we could lose at any time if we're not careful, and depending on an administration that isn't friendly.


Advocacy versus lobbying

Bonney

Something else we talked about at lunch was this fine line between advocacy and lobbying. Federal dollars don't allow you to lobby with their money, but, yet, that is what the ILCs are doing, hopefully with strong advocacy. How is that possible? How can they do that?


Figueroa

It is a fine line that the centers have to draw, and I'm sure a lot of us have stepped over it a few times--hopefully haven't been caught doing it.

What happens is, as an organization we're required under the federal law to do systems advocacy, and I don't know how you can ever define systems advocacy without including lobbying as part of it. In order to change the system, change the laws, change the regulations, you have to write letters to your congressmen, your senators, to your local legislators. You've got to go talk to them, and meet with them, and explain why this needs to happen. We call it educating them. We say that we're going and educating our legislators. There have been moves on the federal level to change the lobbying legislation, to define what we do as lobbying and require us to file as lobbyists for that purpose.


48

Even a not-for-profit can do some lobbying as long as they don't use federal money to do it. You, hopefully, use your person who is state-funded to do that stuff, although even on the state level they make you sign lobbying certifications if you get over a certain amount. You try to raise money to use your private funds for those purposes--do fund-raisers, and that sort of thing. Most of us aren't extremely successful at fund-raisers. There's a handful of independent living centers, I think, across the country that have developed the networks and have been able to do the fund-raising that they need to do, but a lot of us haven't figured out how to do that yet, and that's just because we're still trying to survive.

We also can't allow ourselves to be stopped from doing the advocacy, because we're afraid of being called on for having lobbied. We had a situation in this state where one of the centers had rented a bus to bus people to Albany for lobbying, basically. When they had the feds come in and review--RSA came in and reviewed--they wrote them up on it. They're still arguing it, and asking, in writing, from RSA why it is that this is not allowed to be done when they're supposed to do systems advocacy. They still haven't gotten anything in writing.

I really think that if the centers are strong and we stay together--and that's another reason we need organizations like NCIL--we need to band together and make sure that we're not split apart and picked off one at a time for doing activities that are technically lobbying, when that's what it says in our state law and our federal law that we have to do.


Bonney

I have a question that's not exactly related, but it is sort of related to NCIL. I was reading somewhere that Atlantis, which I believe was an old, early-on advocacy group in Denver, that they contacted NCIL to coordinate and sponsor a national effort to promote transportation accessibility through public protest, to have a demonstration. NCIL stated it supported the accessible transportation but was unwilling to advocate nationwide civil disobedience. Do you know why?


Figueroa

No. And I can't say that I recall that as an actual event that occurred. I know that NCIL did join ADAPT [Formerly American Disabled for Accessible Public Transit: now American Disabled for Attendant Programs Today] in several of their demonstrations around the country. We even planned NCIL board meetings at the ADAPT demonstration sites so that we could have people there for demonstrations.


Bonney

ADAPT is the successor of Atlantis?


Figueroa

Well, it's Atlantis/ADAPT. They are an independent living center, and Bob Kafka runs that. No, Mike Auberger, what am I talking about? Bob's in Texas. Mike Auberger and Wade Blank, they were the founding members, I believe, of Atlantis.

That may very well be the case. There's always been, certainly on the ADAPT side of things, a lot of people very critical of the independent living centers because they feel that they look, you know, people look too professional; they've kind of sold out; they're not grass roots; they're working; they forgot where they came from. I think, to some degree, a lot of people have forgotten where they came from.

Not everybody came from demonstrating though anyway, so we all have different backgrounds, and when people make those statements it makes me a little crazy. I think


49
we need to acknowledge that we all have something different to offer, and that the same people who are chaining themselves to busses are generally not going to be the people who end up going in and negotiating the change anyway. We all have to play a part, and we need to work together to do that. To criticize me because I like to dress nicely, and I don't mind wearing a suit, and I would like to look decent! Well, that's the way I like to look. It's what I'm comfortable in. I'm not comfortable in jeans; I never have been and I never will be. Just because I don't wear jeans to work doesn't mean that I don't know where I came from and what my priorities are. I think that stereotyping isn't good either way, and that's where a lot of that stuff comes from.

I truly can't say that that was an outright statement made by NCIL; not while I was there. I know that one of my first board meetings was in San Francisco so we could participate in the ADAPT demonstration in San Francisco.


Passage of the Americans with Disabilities Act


[Tape 3, Side B]
Bonney

Let's change our focus now and talk a little bit about the ADA. You were involved in working towards its passage, right?


Figueroa

Yes.


Bonney

Did you do it as an individual? Were you doing it as an IL director? Did you do it as a NCIL president? What was your involvement?


Figueroa

I was not the NCIL president, yet, when the ADA was being fought for. I took over the leadership of NCIL in April of '91, so ADA had already passed the previous year. I had been involved in advocating for the ADA, in going to congress, going on the marches. As a matter of fact, the first march that I remember doing for the ADA was when my daughter was only four months old. I was carrying her in the rain, in the march to the White House with Justin Dart and Marca Bristo, leading the pack to advocate for the ADA. That was in '89.

I was on the NCIL board at the time, and I was the executive director of the independent living center, so yes, I was advocating as an independent living center director, as an individual, as all of it, and as a NCIL board member.

We wrote letters and met with our congressman. I was already up here in Albany. We had some pretty positive congress people who were supportive of the ADA. New York was an important state, I think, in, you know, having so many representatives in Washington. It was important to get the New York state delegation on board with it.

At the time we had Senator [Patrick] Moynihan and Senator [Al] D'Amato, I think was our senator if I remember correctly. He was a character, and not somebody who was on board so easily. That was a fight. He was from Long Island, and I know the folks from


50

Long Island really had to go after him to get him to sign on. I think he voted for the ADA. I'm fairly certain he did, but he was kicking and screaming all along the way.


Bonney

D'Amato?


Figueroa

Yes, I'm pretty sure that was the case with him.

Again, 504 had been a time where it was just so exciting. I was so young, and it was all so new. I guess a lot of years had gone by by the time the ADA came around. It was exciting, but I guess I was jaded by all of the previous experiences, and wasn't so sure that we were ever really going to accomplish this. I wanted it to happen, but at the same time we had been through so much in terms of the Reagan years, and all the rest of it. I wasn't sure how successful we were going to be, and I have to say that I was pleasantly surprised that we really--. I was amazed at how we had grown as a community to be able to organize the marches in Washington, and the recognition that we had gotten by that point was impressive to me.

That's what impressed me, was that we actually were being listened to. When we fought for the Rehab Act, we were such a small community, we were so splintered all over the place, and I think the really neat thing was just to see how many people we got out for that march in the rain, and the impression that we made in the White House.

Of course, the neat thing about the disability community is that we've always had people who were either Republicans or Democrats involved as leaders in our community, and so we've always had a connection to one of the presidents, one way or the other. During that time, of course, it was Justin Dart, and it was Lex Frieden, and Evan Kemp who knew the president, and knew C. Boyden Gray.

I was impressed by the high level of negotiations that NCIL had, the access NCIL had to the White House. It was with C. Boyden Gray and Evan Kemp that, you know, really--. He was on the EEOC [Equal Employment Opportunity Commission] at the time, chairman of the EEOC if I remember correctly. That was the thing that impressed me.

I felt like I was re-energized by it because up until that point I was starting to feel like, "Aw man, things are getting really bad here." So it was very exciting. It was once again a time to kind of feel renewed when all of that started happening, so it was easy to write the letters, and it was easy to make the phone calls at that point because it was just, you know, wow! This could really happen.


Bonney

Did you work with Lex in the NCD [National Council on Disability] during this time period?


Figueroa

I was not involved with working with him, no. Marca would have been, you know, more involved in it at that point.



51

Justin Dart and his state tours

Bonney

In my readings to prepare for this interview I did come across something that was talking about Justin Dart and the fifty different--what's the word I want?--meetings that he organized.


Figueroa

The state tour.


Bonney

Yes, the state tour. Meetings that he organized to promote the passage. In one of these readings you're quoted as saying that "Attending the public forum was extraordinarily empowering. When someone has a disability one tends to tolerate the discrimination because it's how you survive. Hearing people talk about their experiences could be a consciousness raising experience and charge one with a desire to fight for human rights. It was empowering because one realized you weren't alone."


Figueroa

Yes, it was. I guess I was up here and Justin came. We had a meeting at the Marriott Hotel and there were people--we brought consumers.

I think, even though I was already somebody who was identifying as a person as a disability, it was energizing again, and just kind of reaffirmed my feelings to hear other people talk about their experiences, the discrimination that they had faced, and reinforced why we had to be doing this. It was just so moving: one of our consumers who was there, Roberta Duke. She's a woman labeled as mentally retarded, grew up in institutions, talked about her experience as a person in institutions. She came to this to do her testimony, and I cried. I just cried because it was just like listening to this; and it wasn't that I cried feeling sorry for her, I was just connecting so much. She was very aware of how much she had been discriminated against, and how poorly she had been treated, and it was the first time she was getting to put into words, I think, for her that this wasn't fair, and that this wasn't the right way to be treated. It was just--it was a tremendously moving experience. Even to think about it now, it's moving.

Again, I think that whole process re-energized me. I had just started the center only in the last three years, and you get bogged down in all the administrative mumbo-jumbo stuff, and even being on the NCIL board was, you know, more stuff to bog you down, dealing with their by-laws and anything else that you had to deal with. But this was the stuff that you realized you were in it for, and that just gives you energy.


Bonney

Talk a little bit about Justin Dart. What's he like?


Figueroa

Justin is an amazing man. I met him the first time he decided to go across the country and visit independent living centers, when he first really started getting involved in the disability community, and that was when Reagan first became president. Justin visited CIDNY, the Center for Independence for the Disabled in New York, and that was when Pat was still the director. He wanted to meet with people, and we were all really suspicious of who this Republican was from Texas with a disability, and what he was up to. [laughter] We were all like, "Wait a minute! Who does this guy think he is, coming in?" He truly just wanted to hear. He wanted to learn as much as he could about what had been going on, and about the disability rights movement. He didn't really have much


52
of a clue, it seemed like, at the time. We all wondered what he was all about, and what he was going to end up becoming as part of this.

I was just very impressed though, with the fact that he would take his own resources and go around the country and try to learn; but very skeptical--typical New Yorker, I was extremely skeptical of what his purpose was. Over time I have just become so amazed by him and his dedication to the disability community, and how he really follows through with what he says he's going to do, that he's very genuine and passionate about civil rights, passionate about disability rights, and that we have been oppressed. To hear this from a Republican from Texas was just, you know, too much for this New Yorker [laughter] to handle. Just unbelievable.

In 1992, I guess, I went to a conference in Vancouver. Independence '92 Conference, and it was the Disabled Peoples' International, DPI, had a meeting out there. Because I was NCIL president, they got some funding for me. Justin and Judy had managed to get some funding for a contingent of U.S. folks to go out there. For all I know Justin paid for it; I'm not even sure, quite frankly, but I know that the government, they did manage to get some money to cover my expenses to go.

We flew back home together, and that was there I had a chance to really just sit down with him and we talked the whole way about his experiences in Japan. The things that they had done to assist young women who were homeless or poor; not with disabilities, necessarily, but to take them in and give them new lives, and give them jobs, and in exchange for that they worked for him. How he had kind of transferred that to the United States when he moved back to the United States. He has this army of young women, mostly young girls, who might have ended up in, you know, prostitution or whatever, and some of them were, you know, in the early days young women they literally took off the streets, who have served as his attendants, have done work for him with the Justice for All, and do all the faxing, and the phone calls, and just kind of dedicate themselves in exchange for room and board, and assistance with college.

I just thought, "Wow! What a great thing. He's had an impact on so many people's lives." He could have chosen to live the life of a wealthy person who didn't have to be affected by any of this stuff because he had more than enough money with his trust fund; he lives off of his trust fund. Now I think he's probably dipping into it to pay for the things. He has to be careful because he certainly doesn't have any other income coming in. He's just taking his money and using it. But he could have just been set for life, you know.

He'll tell you, he was not a nice person. There was a time when he was just really somebody whose whole focus was making money, and taking care of himself, and his own needs. He's just an amazing person. I'm sure Yoshiko Dart had a tremendous influence on him too, and he'll tell you that she has.

But I'm just so impressed with him. I just can't say anything bad about Justin. For all the skepticism I had in the beginning, he is just an amazing man who has been willing to dedicate his life and his resources to the disability rights community. I don't think you can ask for better than that.



53
Bonney

I've asked you everything I want to ask. Have I not covered something that you wanted to talk about? Or do you want to go back and expand on something, or add anything?


Figueroa

I can't think of anything at this point. I feel like I've told you--[laughter] I think I've told you more than you probably even wanted to know.

I didn't know what to expect from these interviews, and this has been kind of interesting for me. Very moving, actually, because it's just bringing back all sorts of great memories and good experiences.


Bonney

It's been a wonderful interview, and I really do thank you a lot.


Figueroa

Thank you.


Disability Rights and Independent Living Movement Oral History Project

Patricio Figueroa

Early Activist in Disabled in Action, First Director of Center for Independence of the Disabled

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

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

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 Patricio Figueroa, dated June 25, 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:

Patricio Figueroa, Early Activist in Disabled in Action, First Director of Center for Independence of the Disabled in New York, 1978, an oral history conducted by Sharon Bonney in 2001, in New York Activists and Leaders in the Disability Rights and Independent Living Movement, Volume II, Regional Oral History Office, The Bancroft Library, University of California, Berkeley, 2004.

Tape Guide

  • Tape 1, Side A 61
  • Tape 1, Side B 68
  • Tape 2, Side A 79
  • Tape 2, Side B 87
  • Tape 3, Side A 95

Interview History--Patricio Figueroa

Patricio Figueroa, a native of Puerto Rico, has been described as the Che Guevera of the disability community in New York because of his tenacity in dealing with politicians around disability issues. He attended Brooklyn College; became an organizer in SOFEDUP [Student Organization for Every Disability United for Progress] and Disabled in Action; participated in local and national marches; was the first executive director for the Center for Independence of the Disabled in New York, CIDNY; and became a recognized state leader in the independent living and civil rights movement in New York.

Mr. Figueroa's interview is rich in details about Judy Heumann as the recognized leader of Disabled in Action and about the organizing, decision-making processes, and activities of DIA and the early New York activists. He also provides his unique minority perspective on the independent living and disability rights movement and the parallels he saw with black organizations, as well as with the women's movement and the Vietnam antiwar movement. Figueroa gives detailed accounts of how the Center for Independence of the Disabled in New York was founded, of the stress on him as director, of the constant struggle to meet operating budget, and of his decision to leave. The transcript also gives the reader a history of the development of independent living centers in New York State and the political struggles to keep them open.

Figueroa, born in 1948 with spina bifida, moved to New York City in 1958, lived in a walk-up flat without an elevator and got around as a child without a wheelchair, using his hands and his stumps. Home schooled, he was encouraged to attend an arts and design school during his high school years. Following a year at Parsons School of Design, he attended Brooklyn College and there began his activism when he attended a meeting in Judy Heumann's home and became a DIA member. He organized the demonstrations and political activities to get disabled access to the New York City subway system and city buses, taking on the Metropolitan Transit Authority and winning. Figueroa worked in Mayor Koch's office, was the first director of CIDNY, and helped establish the New York State Institute on Disability, which helps people with disabilities establish their own businesses.

The interview took place on June 25, 2001, around the dining table in Figueroa's home in Cohoes, New York. The interview was conducted in two sittings, one in the morning and one after lunch. Mr. Figueroa was home sick the day of the interview, and there were numerous phone calls from his office which he needed to take. The Figueroa's dog was present also and can be heard barking on occasions when someone walked past the house or entered. Early in the interview, there was a gap of approximately twenty minutes on the tape. Mr. Figueroa provided written material to be added to the transcript to fill in the information that was not recorded. The transcript was edited by the interviewer and then heavily edited by Figueroa.

Sharon Bonney
Interviewer/Editor
February, 2004


61

Born with spina bifida in Puerto Rico, 1948; childhood and schooling in New York City


[Interview 1: June 25, 2001] [Tape 1, Side A]
A guide to the tapes follows the table of contents. Bonney

Pat, what I usually do in my interviews is start out by just asking you some background on who you are and where you were born and that sort of thing. Could you tell me when you were born and where, and a little bit about your family?


Figueroa

I was born in Cataño, Puerto Rico, April 20, 1948. I'm the fourth son of a family of ten siblings, seven boys and three girls. Currently my mother is deceased. My father is still alive and lives in Puerto Rico with one of my brothers.

I work for the state of New York. I was born with spina bifida. In fact, I was told recently the fact that when I was born the doctor told my mother that I had three days to live because I had spina bifida and a duodenal blockage. It's fifty-three years later and I'm still around. It's been interesting how medicine has advanced since then.


Bonney

How did you get from Puerto Rico to the United States? Did you come to New York directly?


Figueroa

My father had family in California. My father was a very gifted manager, a business manager. He had his own successful bakery in Puerto Rico. And his sister had a huge farm in California, she needed somebody to help manage the farm for her. She asked my father to come and help her with the farm. The plan was for my father to come to New York City and bring the family and once we were all here, to move to California. During that period my father took a job and he got injured on the job, so when we eventually came to New York, the last three members of the family--actually four members of the family were left in Puerto Rico: my mother, my oldest brother Fernando, myself, and one of my younger brothers--my father was out of work and recovering from surgery. We came to the United States in December of 1958. It was a cold, cold day, a snowy day.

We were basically very poor. My father was not able to work and he was miserable. We lived in a converted store front which had two rooms. It was horrible. We ended up on welfare and my father was totally demoralized and humiliated. So that's how we started. If it wasn't for the support of the family, uncles, aunts, cousins, et cetera, we would be in the streets.


Bonney

Was it at ground floor? Did it have access for you?



62
Figueroa

Access was a word that wasn't in the vocabulary, or anything of that nature. It was just barely getting by. It was a walk up tenement building. Even the store front itself was a walk-up. We were cramped into a space. It was technically two bedrooms. One room was the front of the store, our bedroom, the other was the back of the store, or our living room, and then there was a kitchen and a bathroom.


Bonney

How did you handle that? How did you get up and down?


Figueroa

I didn't get up and down. I think we spent about a year in there. When the weather got warm we used to go out to the stoop, the stair in the front of the building, and sit there maybe for a just a few minutes, enough to catch a look at the neighborhood.

I think by the end of the first summer we had an apartment upstairs on the fourth or fifth floor of the building. It was a much bigger apartment, very much more suitable for the size of my family. It was not a building with an elevator, so I spent most of my time looking out the window on the fire escape. I had home schooling. Actually, it was home schooling in the sense that the City of New York Board of Education sent a teacher to my house for me to be taught.


Bonney

How many hours a day?


Figueroa

About three or four hours. After home schooling I went to public school. They were called Health Conservation classes--handicapped kids segregated from the rest of the other kids. It was as if we had the plague or some dreadful disease. Health Conservation was a misnomer. It was neither healthy or conserved your health. Pretty much like special education: It is neither special and it is barely education. I think the school was PS 59, I think. It was on East 51st Street in Manhattan. It was an old building. Inaccessible too. They used to put out a wooden ramp and pull us up in our wheelchairs.

There were about thirty-five of us in half a dozen rooms on the ground floor. The classrooms ranged from first grade to eighth grade. I know eventually we moved from that building to a new one in the westside of Manhattan. On West 71st Street. This school was accessible except the "normal" kids were upstairs and the "gimps" were downstairs.

Every morning we were bused to the school in these noisy and smelly lift-equipped buses. Some of us, like me, were on the bus for over two hours one way. It was horrible. I don't know how I survived.

I was well liked and considered pretty smart in school. Soon they discovered I had artistic talent and that I was very good. Several teachers felt strongly that I should go to an art high school, and not the designated high school for disabled students who lived in Manhattan. So they starting talking to me about the possibility of going to an art school. This was great since I wanted to be an artist, but this meant no special services, except for being bused to school. One of my teachers knew the principal of the grade school that is attached to the High School of Art and Design and she began to make inquiries as to how I could get into the high school via the accessible grade school. After that was settled, they started working on getting me bused to the high school and back since there is no school buses for high schools they did a lot of arm twisting. Or at least this one did not have any.


63

These three wonderful teachers not only set my future direction, but they gave me encouragement, and confidence. They were my idols. The three people who changed my life most. They voted me valedictorian of my class in the eighth grade, and I got so scared that I lost my voice. That's how shy I was.

[Phone rings. Tape is turned off and is blank for a significant amount of time]


Bonney

So you went to the high school--


Figueroa

High School of Art and Design. Going to A and D was being mainstreamed. I had no special help or assistance. I had to hustle like the rest of the students. Typically, they scheduled a shop class for usually two periods; some of them are three periods. So that means that--I had a packaging art, package and design class for two and a half hours straight. It was an advanced art school; only one of five people got in. Transportation by school bus was arranged and they would drop me off at 8 am, and pick me up at 3:35 p.m. However, one of my classes went till 4 o'clock. So every day I missed about twenty minutes of class. Packaging was one of those classes. They teach you how to make packages--you know labels and different boxes, et cetera. I would typically miss the last half-hour of that class, and that wouldn't be a problem because I could finish the work at home. That wasn't always necessarily possible, but it pretty much worked out.

Let me just add a footnote to this: there was a grand reunion of my high school and a dozen of my high-school buddies have contacted me wondering whatever happened to me. I was registered with Classmates.com, and when they saw my email address--they started sending me email messages--and the woman who was heading the whole campaign was very interested because I was told that I was the first physically disabled student to go to Art and Design. She said she understood that somebody else was there before me. We started emailing back and forth. The long and the short of it is that I've had a lot of contact with my high school colleagues. They've all been wondering, "What did you do? To us you were such a--" they didn't want to say I was an inspiration, but it was like, "This guy is really set an example for all." I had to do everything they did, including carrying a portfolio and art supplies around. So it's been kind of interesting and it was fresh on my mind, some of the things from high school because some of my friends recently calling me and asking me, "Remember this? Remember that?" It was a nice feeling to hear from them. My life's most memorable experience was the High School of Art and Design.


Encouragement to attend college, a year at Parsons School of Design

Bonney

So then you moved down to Pratt Institute, is that correct?


Figueroa

When I finished at the High School of Art and Design I applied for--well, let me tell what happened. I wanted to just finish my school and I knew my folks wanted to go back to Puerto Rico. So I took a general diploma curriculum--what we call the general education course, not a Regents. But I made the honor roll and I was on the honor roll for three consecutive years. During the second year of being on the honor roll, my guidance counselor came down and said to me, "You should go to college." I was like,


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[sarcastically] "Yeah, I'm going to go to college. My parents don't have money to feed us, and you want me to go to college." And she said, "No, you don't have to pay. The state, they will fund your college education. You've got good grades, both academic and in art." She told me to start applying to colleges I wanted to go to.

That became another challenge. They gave me a book where all of the colleges were listed that had art. I applied to Pratt; I applied to Cooper Union, MIT, Parsons. I wanted to go, though, to the University of Illinois at Champaign because the campus was supposedly completely accessible. As a young man I was like, "Well, you know, it would be an interesting experience. At least if I move out of the house I know I'm going to be in an environment where other people have made it," as opposed to going to MIT, which I had no idea what awaited me. Remember, this is prior to Section 504.


Bonney

This is what year now?


Figueroa

This is 1967, '68. Actually '67 because that's when I--


Bonney

Did you get into Illinois?


Figueroa

The state would not fund my out-of-state education.


Bonney

You're talking the Department of Rehabilitation?


Figueroa

The Department of Rehabilitation. They had made the decision that they would not fund out-of-state students. Somebody told me I could have challenged it, but--I got into MIT. I got into every school that I applied, because like I said, I was on the honor roll. The guidance counselor also forced me to take the Regents exam even though I had not taken all the Regents-bound courses. I took the Regents; I did very well. With the regent's I was going to take the SAT [Scholastic Aptitude Test]. I did okay with the SAT. I did about a 900 SAT score. I had a friend who got a perfect score.

I had decided what school I wanted to go to. I picked Parsons School of Design. Pratt was too inaccessible, even though there was a young woman who was attending who was in a wheelchair. She had a whole bunch of people who would carry her up and down. I didn't think that was something I wanted to experience on a daily basis.


Bonney

Was Pratt unwilling to make accommodations? Or to move classes?


Figueroa

This was so early on. 1967 sounds like a time in which there was a lot of new consciousness coming in, people realizing that the war was immoral, and that this was bad about it, and so on. But disability was being overshadowed by the civil rights era for black people when this issue had come into light. Nobody quite understood this whole thing with disability. Pratt Institute was like an old castle in appearance. I don't know how they would have made it accessible.

Anyway, the long and the short I decided not to go there. It came down to Parsons. There were some very close friends of mine who were going there, so I felt comfortable with the group. It was a pretty busy school, but between the problems at home, not having money to really--well, that's not true--the equipment was being bought by the state. Because art can be very expensive. You need a camera; you need this; you need


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that; you have to take all these courses. My father was eager to go back to Puerto Rico. He had already extended the deadline one year because I wanted to go to college for one year. So he said, "No, we're going back to Puerto Rico." I said, "Well, I'm staying." His position was "everybody's going." I said, "No, I'm staying." That was it. I stayed with my older sister. She was living in the Bronx. She was married. She had a little girl. I stayed and eventually I got an apartment. My getting that apartment was a result of an advocacy action taken by a disability organization.


Bonney

DIA? Disabled in Action?


Figueroa

DIA.


Bonney

We'll get to that. I just want to follow up just a little bit on Parsons and then how you got to Brooklyn College, because that's where your activities really started. Was Parsons accessible, or did they accommodate, or how--?


Figueroa

Parsons was pretty accessible. There were two steps in the front but there was a ramp into the lobby. There were two elevators. It was kind of strange. I think one elevator you needed a key, the other one was a service elevator, but there was a maintenance man and he was willing to come and take me upstairs in the service elevator. Were the bathrooms accessible? Well, now. No. You learn to urinate by remote control; that's the way you went about it.


Bonney

How long were you there?


Figueroa

I stayed one year. Even though I liked my friends and I had a good peer group of people that were around me in the social circle, I just thought I needed to have money and wheels, as my only means, to stay and to survive in New York City. You have to have transportation in New York City. So I started saving money and when my father decided they were leaving I said, "I have enough money for a down payment on a car." In order to pay for the car I had to eventually leave school, get a job. There was a placement service that was part of the Rusk Institute [NYU Medical Center at 34th Street] Rehabilitation facility. They helped me find a job. Then I had a car. I had a place to live, at least temporarily, and I had some income. I lived with my sister for three years. I went to Parsons for one year and then I went on to work and do evening classes in art.

The experience at Parsons was very easy. I think the only thing that I tell people about it was that I liked doing fashions. My friends all started kidding me, saying, "You know, all the guys in fashions are gay. You know that right?" I said, "What are you guys trying to tell me?" They said, "Well, you know, you're Latino; you can't be gay." Eventually I gave up fashion. I used to tell them that the reason I was in fashion was because that's where all the women were. It turned out to be something that I really felt wasn't going to get me where I wanted to be, and it was not satisfying me.


First involvement in Disabled in Action [DIA], attending Brooklyn College, 1972

Bonney

So you went to Brooklyn College when? What year did you get into that?



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Figueroa

That's an interesting question. I'd say, I think it was '72.


Bonney

That's where you got involved with the Disabled in Action?


Figueroa

No, actually, at Brooklyn College I was already involved with Disabled in Action, because Disabled in Action--let me see if I can recapture the sequence of events. I was living with my sister. I wanted my own apartment. I had applied for the New York City Public Housing Authority, for my own apartment. My older sister, Josephine, was--it was her apartment, and she brought up my sister Carmen to come up and live in New York City. Carmen didn't want to stay in Puerto Rico. She was already eighteen and she wanted to come to New York City. She came to live with Josie, her husband Miguel, and her daughter Michele. Josie's husband Mike passed away many years ago at age forty-three around December of 1984.

Anyway, I wanted to get my own apartment. I had written letters; I had made phone calls; I tried going to social workers, and I wasn't getting any reaction. I had befriended this woman--I don't know how I got to know her--her name was Pat Payne. She was in a wheelchair. She told me about Disabled in Action, that she had been at a meeting in Brooklyn in Judy Heumann's apartment. She told me if I wanted to go that she would pick me up. I already had a car, but I ended up at one of these meetings at Judy's house.


Bonney

Judy Heumann's house?


Figueroa

At Judy Heumann's house, yes.


Bonney

What happens at this meeting?


Figueroa

If I remember correctly, I think there were three men. There were two Larrys. One of them is now married to Denise McQuade, who was one of Judy's right-hand persons. There's Bobby Linn, currently director of the Bronx Independent Living Services, Inc., New York City. A couple of other people who got rides to the meeting. At least two people who are no longer with us. I think there was a guy by the name of Larry Allison also there.

I think it was Pat who said to Judy that I was having problems getting an apartment, even though Pat didn't have such a great apartment either; she lived in a ground floor, but it was kind of a walk-in kind of an apartment on the ground floor. This was an apartment on the Lower East Side. But she was happy there. She had a lot of people that liked her. The community was very close to her.

Judy said, "So why don't we send a letter to Commissioner Christiansen--" that was the guy's name at the New York City Housing Authority--" and let us say, 'What's wrong? Why can't Patricio Figueroa get an apartment?' If he can't get Patricio Figueroa an apartment within thirty days, we're demonstrating in front of the New York City Housing Authority." I remember Judy saying this.


Bonney

Same old Judy. [laughs]


Figueroa

Same old Judy. Anyway, they wrote the letter. Within a couple of weeks I got contacted. They said, "Well, they didn't have any apartments suitable in the Bronx, but they have


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one in Brooklyn." "Okay." At that point I had already began to apply to Brooklyn College so I said, at least that will be fine because I won't have to drive from the Bronx to Brooklyn to go to Brooklyn College. So I got an apartment, a little apartment on the third floor of a public housing development in the north side of Brooklyn. It's on the north side between Greepoint, Bushwick, and--you know, the north side. It's a really unique but nice little community there.

My sister Carmen came to live with me in the apartment. Everything worked well except for when the elevator broke down and it became a hassle to come up. Soon we were joined by a couple of my other brothers who were trying to leave Puerto Rico--my brother Francisco came out. He lives in the community up here now.


Bonney

Tell me about what you saw DIA doing and what your involvement was with DIA. Tell me what kind of an organization it was?


Figueroa

I wasn't sure. I knew it was an advocacy organization. A couple months later, I was going to be exposed to the same kind of mentality at Brooklyn College. I had never seen people with disabilities with the commitment, the drive to say, "We're going to change this. To hell with the damn system." I think what caught me about it was that it became almost consistent with something that I had thought about when I was going through my rehabilitation. After my surgery, I was going to rehab three times a week, learning how to walk with my new prostheses. You had to go up a flight of stairs and then you'd go down a flight of stairs, learning how to go up a sidewalk, how to get into a car, and, you know, how to carry something with your crutches. I'm sitting there saying, "It would be a lot easier if the world didn't have all these God damn stairs." Ironically, in high school one of the things I was interested in was architecture. The reason I was interested in architecture was because I wanted to design buildings without stairs and steps.

At the DIA meeting I thought, here I was, and a bunch of people with disability, mostly women--I don't think the two men that were in the room had disabilities, or at least not obvious ones. I don't know who else was involved. There were other people, students from Long Island University that were involved. I can't tell you all the names. They took an interest in me and said, "Yeah, let's help out." In a way, Judy looked at me was like--well, the disability rights movement can't be about what middle-class white people want, necessarily. This is the most basic thing--somebody wants housing. I guess for her it was like, "Yeah, this is something that will make a nice publicity campaign, media event, if we can pull this off."


Bonney

What were the issues that they were involved in?


Figueroa

One of the primary issues was obviously Judy's suit against the Board of Education on the basis of discrimination. So education was definitely up there. Transportation, policy, accessible and affordable housing was a priority as was civil rights. Then there was another organization called ABC (Architectural Barriers Corporation), and they were primarily interested in transportation. They would advocate for parking spaces near where you work, so special parking identification tags and things like that--architectural barriers, building codes.


Bonney

Did they collaborate, DIA and ABC?



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Figueroa

Eventually, yes. The ABC people were older--an older group who had less radical views, less radical approaches. They wrote letters, et cetera, et cetera. I doubt they had had demonstrations. It was the 1970s and the war was still going on, and people were now more determined than ever. Government had better listen, otherwise they were going to have to change.


Bonney

Did the war in Vietnam have a big effect on what Judy and what people in DIA were doing?


Figueroa

Yes.


Bonney

Talk about that.


Figueroa

Well, case in point, we had a--in 1972, Nixon vetoed the Rehab Act.



[Tape 1, Side B]
Bonney

You were talking about the--


Figueroa

Nixon vetoed the Rehab Act, and DIA and a couple of the organizations--some veterans organizations--decided that we were going to have a demonstration. We were going to have a march starting from lower Manhattan all the way up Madison Avenue at the peak of rush hour. I brought some people to the starting point of the demonstration but then I decided to drive my car to the end of the march. This was Nixon campaign headquarters near Madison and 52nd Street--the rally and the demonstration was going to occur here.

I remember pulling up and parking and getting out, and I had--I used to wear this army fatigue that belonged to my brother; my brother was in the military, was in the army--and it said Figueroa on the name tag. When all these reporters with their news cameras saw me, and it was, "Look! It's a disabled veteran getting out of the car!" I got out of my car and of course I was in the army fatigues. They started talking, "He's young enough to be a veteran." You know what I'm saying? "He's got to be a veteran; look, he's got an army jacket." So they ask me, "What is your name?" And I said, "Figueroa." Nobody ever asked me if I was a veteran, but I could hear them talking about, "Disabled veterans are coming." They're doing these live feeds. Now, this was a new thing. I must have had an entourage of like ten camera people walking backwards in front of me. I caught up with the demonstration--the march. We blocked--I think it was Madison Avenue that day at the height of rush hour. We had rush hour traffic messed up unbelievably.


Bonney

And you were demonstrating against what?


Figueroa

The fact that Nixon vetoed the Rehab Act and in general just showing that people with disabilities were not going to be written off by the federal government or the local governments.


Bonney

Why was the Rehab Act important?



69
Figueroa

Because the Rehab Act for the first time introduced the provisions that were of a non-vocational nature. It's the first time they introduced independent living and a couple of other funding sources for non-vocational purposes. Also, it contained Title V and Section 504 of the Rehab Act of 1972. That's why Nixon vetoed it, because it had become a social welfare program and he didn't want social welfare programs.


Politically savvy DIA membership: protests regarding Rehab Act veto and gas crisis

Bonney

How did this group, DIA and whoever else was involved, how did they get so politically savvy at such a young age? Most people who were disabled didn't even know about the Rehab Act of '72.


Figueroa

Let me see, politically savvy. We learned the guerilla-warfare tactics from the antiwar movement, the black civil rights movement. Women were already throwing their bras, okay. In New York City, gay people were having riots with the police. We also had great leaders like the late Eunice Fiorito, and others at the colleges.

We knew we had an advantage in that many of the people around us were veterans. These men went out and they gave up their bodies for their country. The country is always told that nobody is held in higher esteem than the veterans. Whenever we could collaborate with a veterans group--there was a fellow by the name of Bobby Mueller--he has a group in Washington. Back then he could generate some of the young vets, the Vietnam vets, because they felt the same thing, "I want to be able to use the subway; I want to be able to park in downtown Manhattan; I want to be able to have an apartment that's accessible." These guys identify more so than the veterans of the Korea era and the veterans from World War II. The reason for that was obvious: "You send me to a war that was for economic reasons only; I came back all messed up and I can't find a job; I can't find a house! You want to give me $1900 a month and this is not enough!"

I think that whole thing--there were a lot of people who were just like, "Just screw people with disabilities. Just screw veterans." They just realized that that couldn't be, because what is this country but military might? And that for all intents and purposes gets its way because of military might. Yes, we have a slight economic domination of the world in terms of money, but so do Japanese, so do Germans. It's just that whenever we see something in our best interest we find a way to use our military to make sure we can secure it. The Japanese pay five-dollars-a-gallon of gasoline. We still pay under two dollars. How do we do that? We have a military that will go into the Gulf and protect whatever interests we desire, or are in our best interest at that time.

We were feeling like this too because we knew this left-wing radical literature and could see the coalition. We could see how history was being taught at the grade school and high school level and see books that described events not in the way they really happened. You put two and two together and say, "We're just like other people in America." We were part of the sixties movement group. "We're not going to buy the government line. We can do better than this." It was all there, look, you know. What's


70
interesting is that we could get enough people out to demonstrations and actions with the limited vehicles that we had.


Bonney

What happened at the demonstration? Did you get what you wanted?


Figueroa

No, the demonstration was really to send a signal to Richard Nixon that we were going to fight this. I remember that we blocked traffic. I was photographed laying in front of a taxi cab. I think my sister said, "You've got to be crazy if you do that. That stupid taxi driver could have just ran you over."

We eventually organized a lobbying trip to Washington to lobby for the Rehab Act. We got buses and volunteers to bring us up and down the steps. The thing about it was that we had already began to develop the connections to some of the schools and some of the universities and draw some of the progressive people from different groups in to kind of give us a hand. We couldn't get into the buses by ourselves, but two strong guys that were involved in progressive college groups could lift up somebody, put him in a seat, and so on. So we had a people like the director of the Mayor's Office for the Handicapped in New York City that was lead by Eunice Fiorito, and she was not afraid to be involved in organizing stuff such as this trip to Washington to rally, to try to get the Rehab Act veto overwritten.


Bonney

Was this activity part of PCEH [President's Committee on Employment of the Handicapped] or was it independent?


Figueroa

No, it was independent.


Bonney

They just went there.


Figueroa

Then after that we started going with PCEH and holding demonstrations in Washington, DC, just like ADAPT does now.


Bonney

I want to go back to a couple of things that you said. Did DIA collaborate or bring in different kinds of people with different disabilities? If so, how did it coalition-build and what was the philosophy behind that?


Figueroa

The DIA attracted almost all kinds of disabilities, okay. People with limited hearing--not necessarily deaf--the deaf and the blind had their own organizations, but we knew a lot of the leadership; in fact, one of the leaders of one of the biggest blind-run organizations lived in the same building as Judy Heumann. So all she had to do was go down a couple of flights and talk to this fellow.


Bonney

Who was that?


Figueroa

Harvey Honig, professor.


Bonney

Harvey?


Figueroa

Harvey Honig. He was involved with--I would say NFB [National Federation of the Blind]. At this point, I don't know, they had some issues with the city in that there were blind people who were falling between train cars onto the tracks because the cars did


71
not have like a pantograph gate to protect a blind person, until they got to the other car. There's an empty space there and the person would fall between the train and the tracks. This is while the train was at a station. So they had issues about that. They had issues about getting ballots--braille ballots or accessible ballots, and on, and on, and on. When something like this comes around some people say, "Yes, this is big. We have to get the veterans out and so on."

There were other things that were happening at that time. There was a gas crisis. We also got together on the gas crisis. For the gas crisis, not only did we bring out--


Bonney

This is in '76?


Figueroa

'73, '74.


Bonney

The gas crisis was 1974?


Figueroa

DIA was not the leader on the gas crisis; it was the ABC group. The main thing was we need our cars to get to work every day. We demonstrated against then-Governor Wilson, because Governor Rockefeller had resigned the governorship and become vice president of the United States--the Nixon, Ford, Rockefeller shift.

We were now on the street, and organized a huge rally in front of the governor's office on 6th Avenue and Columbus Circle. The DIA was in there; the veterans were in there, even special education people. It drew a whole group of nondisabled people that realized that you've got to do something for people who cannot use the subways or cannot use the buses, because what are they going to do? Are they going to go and walk there? That seems absurd. They came out in support, and so the city and the state developed this odd-even gas thing where you got gas based on your license plate number. On even number days, even number plates got gas, et cetera. To people with disabilities we could get gas everyday, any day. It made sense; they can get gas any day.


Bonney

It worked.


Figueroa

It worked, yes.


Bonney

What was the importance of coalition to the DIA?


Figueroa

I think the success of this small, but very radical group was something that some of the other groups had not been able to duplicate--they needed money first, but their success, they hadn't been able to equal that. DIA was Judy, all about Judy and what she wanted for people with disabilities. Other groups did not have a young woman that was quite bright, attractive, and a great spokesperson. She was talented. She knew what she wanted to be, which was a school teacher. Very humble, very all-giving kind of a profession. To be denied because of some stupid bureaucratic thing that says that there's got to be a physical--and she's got to pass a physical, which is--you know, so the public was saying, "Oh God, this is the dumbest idea, someone had to stick his nose in this." We needed teachers, there was already a teacher shortage. So you see the Judy Heumann lawsuit against the Board of Education issue on the front cover of the New York Times and the Daily News and on television. Everybody knows that anything she says is going to be heard by other people with disabilities and they're going to say,


72

"Yeah, yeah, let's do it. This is the time to change things." That was part of what she did.


Takeover of the Metropolitan Transit Authority headquarters

Figueroa

There were other people that were quite radical at the time--I think more radical than Judy to some degree. I was more radical than Judy, although I spent most of my time getting the City University to become more accessible. I also became one of the people who became one of Judy's organizers, like logistical kind of guy: how are we going to do this? How are we going to pull this off? I learned from Judy and others to become the planner, an organizer. Until it came time to lead a really huge demonstration against the city and I pulled it off.


Bonney

What were you demonstrating against?


Figueroa

The demonstration I organized and the thing that I take credit for was when we took over the Metropolitan Transit Authority headquarters. We were negotiating with them to make the subway system accessible and getting accessible buses. The chairman of that group did not want to do this--not with federal funds, not with state funds, not with anything. So there was an advisory committee that was meeting regularly up at his offices, and that group was reporting to a larger group of activists. I was one of the co-chairs of the larger groups and I said, "I think it's time we take action. Okay. We have to tell this guy, the chairman of the MTA where to get off." I said, "Let's organize a takeover of his office."

I was the one that scripted the whole thing out. "We're going to show up there. We're going to go up to his floor. We're going to have x-number of people go up at the same time, et cetera." We planned every detail. I was the director, the planner. We had one demonstration in Brooklyn College, but this was bigger. We had now more people since we had independent living centers, and I was the director of the largest one in NYC, and more people who followed us because we were showing them how we would eventually live independently; we were showing them how to be. They were saying, "These people are the ones who are going to help me be what I want to be." The biggest issue in New York City for everybody, not just for people with disabilities, had been, of course, housing--housing being super expensive. But for people with disabilities, transportation was a close second.

I organized this demonstration at MTA headquarters. We took over the MTA headquarters. We barricaded the elevators; we barricaded the stairwells. The head of the MTA went into his office with his security people. They had guns too; they thought we were going to kill them. We sat there and we got national/international publicity. We had one reporter running up and down the stairs. He was a double agent. He brought us information on what the police were planning to do, and he would give them information through his reports for the radio station and all the other outlets. In fact, I keep saying to myself, "If it wasn't for that demonstration, John Tesh would still be a little reporter on a local CBS station."



73
Bonney

Because he was there?


Figueroa

He was there. John Tesh was the only reporter I let come in. It was interesting. I don't know how this will play out in the record. But he would tell me, during an interview, what was going on with the police tactical squad. "Are you aware that they put a tactical police force and they're downstairs trying to figure out how they're going to get you out of the building? Do you know that they were going to come make an attempt to come back down the rear staircase but they found that you guys had it blocked? Are you aware that they also called the Rusk Institute because they need technical assistance on how to pick up somebody who's got a disability and what to do with them? Are you aware that they're going to send you guys to Bellevue because the court building is inaccessible?" It was funny. His inquiring interviewing questions to me was giving me information. He would bring in sometimes four or five different radio stations and national feeds tape recorders and microphones. He wanted to bring a cameraman in and we said, "No," because we couldn't open the door too wide because somebody else can force their way in.

But yes, I had scripted this whole thing, where we went up to the floor where the chairman had his office. I would tell the guy who was the receptionist, "We're here to have a meeting with the chair." The guy says, "You're from the advisory council?" And I said, "Yes." He would say "I thought there was a meeting with the advisory council yesterday?" There's about two hundred of us that are waiting to meet with the chairman. So this guy was like looking through all the papers. He gets up and he goes into the back and he talks to the chairman. Meanwhile, we're bringing people up on the elevators and just like that--I mean it was a mad rush. We had people downstairs take elevators, and once we had enough people upstairs, we jammed the elevator doors rendering them inoperative. Okay, and then it was like two staircases, we blocked them. Those people in the office staff who wanted to leave were told, "You want to leave? Get out now." But we are not going to let the chairman out. That was the way we did it.


Bonney

And what happened? Did you get public transportation?


Figueroa

Yes, that's true. We got public transportation. I remember being finally carried out of the building by four policemen, and I was yelling to the television camera crews, "We're going to beat you (the MTA) at the polling place; we'll beat you politically; we're going to beat you in the streets; we're going to beat you in the media; we're going to beat you. We're going to get accessible mass transit in New York City." This gentleman, who was in charge of--the chairman--his name eludes me right now--oh God! Why did I forget his name? I just had it in the tip of my mouth. Anyway, he had said to me one time at a meeting, that this would not happen in his lifetime, while he was alive. So I said, "I think you're going to die very soon." And he almost literally jumped over the desk and wanted to strangle me. Why can't I remember his name?


Bonney

It will come to you.


Figueroa

It will come to me. Well, this guy in particular went on to be the representative for the baseball owners when the baseball players went on strike. He's always played the bad guy. Richard Ravitch was his name.


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Anyway, we won the whole thing--politically. I took a position that we were going to help Mario Cuomo get elected if he promised he would get rid of the chairman of the MTA and appointment somebody who was not going to resist making subways accessible. I said we were going to beat them in the polling places, in the court, in the streets. That was my quote when I was being dragged down--and the media. And we did. After the demonstration all the New York City media stations went sour on the MTA. Every night, every station was doing something, you know, bad. Stations started doing negative reports on the MTA. Typically they would start with, "Look at this bus. This bus is filthy. Look at this--the pull cord doesn't work. This bus is like a half an hour late. This subway train is filthy. This subway train is not safe. There's not an MTA policeman." The kneeling buses, which were supposed to be in place at that time, didn't kneel. So John Tesh, Arnold Diaz, and even John Stossel, both of them are on 20/20. They did a lot of reports on the MTA. A lot of MTA stuff, and anti-MTA stuff. They all were doing stuff against the MTA. The media was bashing the MTA.

What happened, just to make matters clearer--to show you how things kind of snowballed--anytime there was a problem and the MTA was going to meet I would get a phone call in my office. About a week and a half after our demonstration, the chairman of the MTA, Richard Ravitch. He's an attorney and a politician. You always know that there are certain attorneys that always pick these bad cases or they're always representing the bad guy that you really hate. Some people say like Johnny Cochran, you know, who's like, "Why doesn't he pick somebody who's very--people are sympathetic to?"

Anyway, Richard Ravitch--there was an attempt on Richard Ravitch's life. The young man that I had to basically fool to get the demonstration started in his office--that young man took the bullet for Richard Ravitch. He lived but it was what happened after the incident that bothered me.

What bothered me was I got a phone call from the stations, TV stations, reporters and asking, "Was it one of your people who tried to kill him?" You sit back and you say, "Oh, my God!" Who do these people think we are? What kind of monster do you think I am? That started bothering me. That was the beginning of my self-examination saying, you know, this has gotten too big.

Some mornings I would get out of the van or the car and there's people waiting down the street like high-fiving you and they're saying, "That's the way to go." You say to yourself, "Wait a minute, I'm just a private citizen." It's like you no longer are really a private citizen. You're not a private citizen anymore. I was getting tired because I'm really very private. I'm saying to you I enjoy staying in my house because I can listen to music that I love; I can do my art work, and I can watch baseball, listen to the news. To me this is--we're inside a house; it isn't anything strange. Although I'm not agoraphobic.

Anyway, I began to realize that one, this media thing was like too much. This thing brought it all home. The minute there's violence they just--just a correlation. I had six or seven reporters call me and ask me, "Was it one of your people who shot him?" And I was like, "No."



75

Brooklyn College and SOFEDUP, 1972

Bonney

Let's go back just a minute to Brooklyn College. You became active in a disabled students group there. What was that group?


Figueroa

I went back to college, after I had bought a car, a Mustang, and had worked for two and a half years doing labels, designing labels, logos, and other things for a garment district company, which was a very nice group of people, a family-owned business. It gave me work experience. I went back to the school; I knew that I needed to finish my education. I took my car, the Mustang, and I basically traded it for a Chevy Impala from this guy. He took over the payments; I took his 1964 Impala. Okay, signed a contract everything was formalized. It was done. I didn't have to make it too complicated. Then that meant I could afford to go back on benefits and get my education underwritten by the state Rehab agency. I applied to Brooklyn College. They accepted me as an evening, open enrollment student. Then I had to take a couple of remedial courses, which I did, and passed them.

There was a group called SOFEDUP [Student Organization for Every Disability United for Progress]. The founder of that organization was a fellow by the name of Fred Francis. Let me just make a point here for the record, okay. I don't think there was a brighter person, more articulate person, and a more gifted leader in the community--not in New York State, but across this country--than this guy, and nobody noticed him. He and Judy were my mentors. I really--I mean intellectually, Fred is up there. He was a double amputee--had become disabled as the result of an automobile accident. He was very, very, very well-spoken. I mean, this guy can talk. He can speak in such a way that it was like mesmerizing, you know? Unlike Judy, he was very rapid and very spontaneous. He was more abstract on a political point. It reminded me a little bit of the things that John Kennedy used to say. They were abstract and kind of make you think.

Anyway, Fred Francis was the founder of this organization. He had just graduated and gone on to NYU [New York University]. There was another fellow who had been vice president. He invited me to the meeting and immediately asked me to become vice president. These two guys, with a bunch of other disabled students, had fought to make Brooklyn College accessible. Still there was fighting that needed to be done. Fighting, there was negotiating, and hitting people over the head and saying, "How can you be so stupid?"


Bonney

What year was this now?


Figueroa

1972 I get into Brooklyn College--'72 to '74 I was there. I remember becoming the leader of SOFEDUP because Arthur [Lefkin], the fellow who was the president, became ill and had to drop out that year. I met my wife Denise through SOFEDUP. Already I knew what Disabled in Action could do--that is, they had gotten me my apartment. I wanted to encourage all the new people, the young people to continue, to become involved. That was my point, to develop new leadership.

It's ridiculous how you go back. We always tell stories about the experiences we had in this school. I remember sitting with an architect, one of the engineering architects, about making a building accessible. We said, "We want a ramp to compensate for those four


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steps," because he wanted to do something around the back of the building which was totally ridiculous because in case you went from the quad to that building you would have to go all around the building that's almost a block wide. I said, "No, you're going to put a ramp." I think his most disturbing idea was another ramp that's going to take away from the quad that is beautiful. You had the fountains and you had the green area and all the paths crisscrossing. Brooklyn College is a pretty campus. He was like, "Another wooden ramp that's going to interfere with the aesthetics." And this was going to be a long wooden ramp. So he says, "Look, I have an idea. Why don't we compromise? Instead of making this forty-four-foot-long ramp we could make a twenty-eight-foot ramp. We will ramp the first two steps." I was sitting there and looked at him and said "And what the heck am I supposed to do with the next two steps?" He just couldn't understand it. The aesthetics came first. The practicality was something that they couldn't comprehend.

So those were the people that we were up against. People like Fred Francis and the gentleman I mentioned before, Professor Harvey Honig, who also taught in City University--these guys were determined to make the City University accessible even before Section 504 became the law, and they did. They had three university administrations saying, "Okay, that's what we need to do." It started at Brooklyn College and it moved to the different campuses: Hunter, Brooklyn Technical, Brooklyn Community College, Queens College, Queens Community College. All the New York City University Colleges, CUNY, eventually had a disabled student coordinator, and we had policies in place. "You know, the lab in a building doesn't have an elevator; it's got to be moved; move it; find another lab. We need to build another building with another lab but in the interim, that student needed to take that lab in another facility, another campus, but eventually city universities have got to be accessible." We have people in these positions who knew they had all this political group behind them, and ultimately if somebody said no it was like, "We'll just demonstrate."

What was also interesting is the reputation you got as a student leader. In Brooklyn College, there were white students and black students and Jewish students, Italian students, and Puerto Rican students, and there were all kinds of conflicts there. Because of this—you know, it was a time when minority people said, "We want a piece of the action too. We decided we're not going to stay behind." The Latino community in particular was, "We're not staying behind for anybody. We are not slaves; we're American citizens. We have the same rights as everybody else."

Whenever there was a problem at Brooklyn College the administration wanted me to be involved. Everybody said I was "a radical constructionist" because I was a positive force. I didn't just say things were bad. I say, "This is the way we have to go and resolve this." Somebody asked me to sit on some of these panels and I was like, "Wouldn't that be interesting?"

This was the beginning of myself getting out of the shell, myself being recognized as a leader. Not necessarily things I wanted to do because I was very shy. I hated to do public speaking. It was just what I admired most about Judy and Fred--people who don't have to script anything. If I'm going to make a five-minute presentation I have to script it because it's like I can't talk and think at the same time. I've gotten a lot better, but Fred was very gifted in this respect. I love the guy. We had a falling out eventually, but I think he's somebody that very little could actually get to him. He also was somebody


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that when Judy wanted to have a demonstration or something she would call on. He would usually say to her, "You know, Judy, instead of doing it this way, why don't you try it this way?" We were the strategists. Not to take anything away from Judy and all the women that were in these organizations, but we helped in a lot of respects.


SOFEDUP, DIA, and the disability rights movement

Bonney

During this time were you and/or the group the DIA and the SOFEDUP groups--were they aware that there were other disabled student programs across the country? And if so, were you influenced by them at all?


Figueroa

Actually, yes, we were aware. In fact, Fred knew about the situation in Illinois, the Illinois University campus and how advanced they were. He was aware of what was beginning to happen in Berkeley. I think there was another college, and I'm not sure whether I should say Boston or some other college that their disabled students were demanding access and services. I can't remember all the specifics, but there were several colleges that we would call attention to. Maybe it was like the University of Chicago or something. Whenever we would meet with the administration of the university [CUNY], this is not something new--most of them required this [accessibility] after a couple of years. I'll tell you, you talk about the progressive people in New York City. You know, maybe this was part of the reason this happened. It was just right, you know. That encouraged a lot of young people with disabilities to come into college.

City University, was once free--all you did was pay a registration fee. Cool. You had some of the best professors in the country teaching at these institutions that were free. Eventually, it came to be that there was a tuition, the same as the state university, but you were getting a great education for the money that you were paying.

Brooklyn College, the students--this was a cultivating area, a place where you cultivate new leaders and you focus on your school; you focus on your issues; you focus, if necessary, on a teacher who's not very accommodating for whatever reasons. You have those. You have teachers--even now. Most of the teachers were good. But there were a few who were just not willing to do anything. You'll ask a teacher, "Can I record the class?" "No, you cannot record the class." "Okay, I'm going to have somebody come in. They're going to take my notes for me." "Oh no, that's not--that's like tape recording." They'll give you grief. You say, "I'll tell you what, I'll bring my lawyer tomorrow and you bring your lawyer and we'll see." So City University became like, "This is the way it's going to be done: if a student needs this we're going to ask you, but if you don't have another way of doing it, it's going to be that way." So that was good. People like Fred were wonderful at conflict resolution.


Bonney

Are you talking about Fred Fay?


Figueroa

No, Fred Francis. He now lives in Arizona.



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Bonney

Fred Francis, okay. Did the SOFEDUP group and the DIA group interact with these other student groups?


Figueroa

Yes.


Bonney

You knew the leaders of them?


Figueroa

I had become a leader of SOFEDUP, so yes, whatever they needed and we could help, we did. What was funny about SOFEDUP was because we were a disabled student organization we got money from the student government. Whenever we needed to pull people in we'd use our money for transportation. DIA didn't have that kind of funding support. We were able to do that. Whenever we established another group on another campus we'd say, "Get money from student government and use it for organizing in the community." God knows, it maybe was against the law.


Bonney

What was the name of the student disability group at city university? Does it have a name?


Figueroa

I can't remember the name of the groups. We wanted them all to be SOFEDUP chapters, but no, that was not the case.


Bonney

DIA, now it had a couple other offices or branches. One was in Baltimore and one in Philadelphia. Who was part of that?


Figueroa

DIA began to have different chapters start in different cities. There was even one in Syracuse, New York. There was one, I understand, in Philadelphia.


Bonney

Do you know who ran that?


Figueroa

No. I met some of these people who were involved with these organizations at the president's committee later on. But no, I was not familiar with them, because remember, I did not become an officer in DIA; I became an officer in SOFEDUP. I used to go with Judy and Denise McQuade and other people but I had my own things that I had to take care of.


Bonney

At what point in your life did you realize that there was a disability rights movement?


Figueroa

I think when my friend Pat Payne called me and said, "There's this organization [DIA]." And I went there and I said, "Wow!" I was old enough to know that it was black people fighting for their civil rights. Okay, I was old enough to know that there were women who were saying, "We are being exploited by the beauty pageants, and the sexist commercials and television." In my mind, they get exploited more now than they did before but that's another matter. I think the thing with women wasn't so much the exploitation, but the body beautiful image, which I having been in advertising at one time I know a little about this. We knew that this was never going to go away. It is the right for women to control their own bodies, reproductive freedom and the freedom to say "No,".

The disability rights movement was something that brought a little bit of relief, or I should say benefits, for everybody. I remember during an internship for the City of New


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York Transportation Department, and we were working on trying to design a bathroom that's a cubicle and a half bigger because it would allow pregnant women to be in there more comfortably than the standard twenty-eight inch cubicle. You know, everybody was like, "Whoa, you can't have a cubicle that's forty inches wide." I said, "Well, if you're a parent with a child in a carriage, where are they supposed to leave the carriage, outside? Suppose somebody takes the baby and walks off? Pregnant women, and women with babies, can and do have to go to the bathroom. What am I supposed to do, leave my door open because--my baby is sitting outside?" Other people began to say, "I guess so." The kneeling bus became a benefit to people who also had baby carriages. The original Roher bus which was the real first accessible bus model. It was wonderful because mothers could roll their baby carriages in. It was fantastic. That's the way we wanted to go. [phone rings, tape stopped]



[Tape 2, Side A]
Bonney

Pat, when we left off before lunch we were talking about your early days in college and your activities with DIA and other organizations. Could you tell me how you observed decisions being made in the DIA organization?


Figueroa

It was done pretty democratically. In other words, there was charismatic leadership in Judy and some of the people around her. She had good advisers. She had people who had no history in disability, disabled and nondisabled. Her parents were incredible supportive. Her mother was quite an advocate and I was proud to have met and have known her father, also a very good supportive father. Judy had a sense of community. I always felt that she needed to know that her friends were with her. She was one of those people who would always look for everybody to have a voice in decision making.


Bonney

How did DIA define its community?


Figueroa

I think at the beginning it was those people who wanted to join with us and fight for our rights.


Bonney

Could they be nondisabled people?


Figueroa

They could be nondisabled people. Then I think it got broader, it was all people with disabilities, their families, and their friends. They were all progressive. Thinking back, I remember literature that said that "progressive-thinking peoples."

We had a huge following of people that could not come out and participate in demonstrations or do some of the things that we were involved in doing. They did a lot of calling and registrations and writing the newsletters and things like that. There was a woman named Ronnie Steier who had--I believe it was muscular dystrophy. She had a long-time effort trying to sue the MTA for not making the subways accessible.

There was a fellow by the name of Jimmy Lynch, muscular dystrophy. He was one of the first people to introduce me to the get-Jerry-Lewis-out-of-town mentality--Jerry Lewis is not a positive force--and from there framed some of the philosophy that--why does this clown think that pity is going to be helpful for people with disabilities? Jimmy brought up philosophical questions and things that even to this day they need to be answered. I can tell you, things like the conflict between the right of a disabled child to


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be born and the right of a woman to make a decision not to have that child; the right to die with dignity. How do we really help mentally disabled people? How do we accommodate them in the movement? That's a good question that's still being decided. So he was one of the real good thinkers. Unfortunately, he left us a little too early.


The role of independent living centers

Bonney

What do you think the independent living--what does that concept mean to you? What's included in independent living?


Figueroa

I define independent living in the brochure that we did for CIDNY (Center for Independence of the Disabled in New York) as basically all those things that nondisabled people take for granted and disabled people have to struggle for everyday: getting up, getting dressed, going to work, getting to work, having a job, having an apartment or a house, having an income, having a family, choices. At first, I'd say some people would say it was corny--they thought it was corny--but then it's like this is the bottom line. It was. I don't want to take full credit for that because my coordinator of services, Ann Marie Tully, who was a "wordmeister"--she was very good in English and articulating her views. At first she thought it was kind of simplistic, mainly because we were both so close to Fred Francis who was so eloquent in how he put things. Then she said--she was the one who started saying, "I actually go and say this to rehab counselors and they're like, 'This is really simple.' You know, it sells." When you have a product, if you can tell the people that the product is good: "Just try it; it's good." And if the product is good it will sell itself.


Bonney

Is the independent living movement different than the disability rights movement?


Figueroa

Yes, I've always had this discussion with my friends and I do believe that there was a disability rights movement way before independent living. I studied planning in school. As you know, the planning profession became very prevalent, particularly social planning, during the War on Poverty. There was a concept called advocacy planning and so on. Some of the advocacy planners, they looked at how some of the anti-poverty monies were being used. Particularly some black groups, they were being used for self-help centers and employment agencies and for community organizing. I think one of the most successful example was something called HARYOU, in Harlem. It was an organization that basically organized the black community in Harlem to take control of the community, to elect their representatives, fight for the things they wanted.

A lot of what independent living centers did was to provide a place where the organizers can come together, meet, do the planning, do the organizing, reach out to the community, bringing other elements to the community, and define the war zone. You need a base or a fort, is what I used to tell people. You need a fort where the troops can come, get their ammunition, get their orders, and then go out into the community and fight. That's what independent living provided.


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I think that independent living had a lot of roots in the disability rights movement. But don't get me wrong, there's a lot of independent living leaders who don't have any idea why independent living came about--independent living centers came about.


Bonney

Why did they come about?


Figueroa

Well, Jimmy Lynch, as I mentioned before how he paved the way when he discussed the whole concept that we couldn't take over all of the voluntary agencies; we couldn't take all of Muscular Dystrophy Association or UCP [United Cerebral Palsy] or March of Dimes--we couldn't. They were only co-actors. We needed to have our own places, our own things, our own organizations. I agree with him on that, because the same thing happened with Harlem. There were progressive organizations that were being funded by benevolent white folks and other sectors. This organization's approach was, we're going to do it with the federal money and do it our own way.

By the way, HARYOU was like a community development agency. It's basically the generic term they use for these organizations: community action. In many states some of them are being called community action, and in other states they're called something else like CAP programs.

Independent living centers are supposed to be that alternative to UCP, or MDAA [Muscular Dystrophy Association of America]. Okay, a lot of the new directors, the second-generation directors, lost that concept entirely. Then there are many nondisabled directors who just bought into that whole notion. We have several centers in this state that are as patronizing and as nonproductive as United Cerebral Palsy or Muscular Dystrophy--the more conservative of the two.

In fact, I know some UCP's that are more progressive than some of the centers.

I think the centers, by the nature of the beast--when we started, "We were constantly biting the hand the feeds us." [quotes indicated by Figueroa] That was the state and the federal government. Some centers are now more acquiescent; they want to do those 704 reports more than anything else. I couldn't give a damn for reports, statistics. My idea was these people have to give us this money. This is the right thing to do. The reports come whenever they're finished, and you get them in my format. In fact, we'd have big fights when we organized the New York State Association.


Bonney

Organized the what?


Figueroa

The New York State Association of Independent Living Centers. I was one of the founders. First of all, I didn't want an association. I want to go on record as saying that. But the reason we brought that about was that we wanted to tell the state collectively--at that point it was nine centers--that we weren't going to take orders from them. I was one that had already a big fight with the state--when my center started it was the first year. The issue was finances. At the end of the first year I had a fight with the state that congressional people had to get involved, because they decided that--first of all, there was a state education department and no one could question what they did. Their attitude was, "Nobody tells the education department what to do." It was like, "You're a small contractor; we can squash you like a fly."



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Bonney

Were you funded by the state education department?


Figueroa

Yes, CIDNY got funded by an anonymous donation and a grant from the state.


Bonney

Could you, for posterity, tell us what CIDNY stands for?


Figueroa

Center for Independence of the Disabled in New York.

I knew management, so we had started on this contract on a cash basis. All the expenses and the employment was being done on a cash basis. At the end of the contract year this guy comes in and he says, "No, we're now switching to a accrual basis." I said, "No you're not," because there's about $15--$20,000 that's not going to come back to me for another six, seven, or eight months, and that means the cash flow would be very low; it will threaten the project. He says, "You've got no say in this matter." Well, I didn't know what this was worth it or not, but he certainly didn't stay long at the State Department of Education. I called everybody under the sun, my congressman, the RSA [Rehabilitation Services Administrator], my representative in Washington, my assemblyman, my senator. The next thing I know, the commissioner of the VR agency gets me directly on the phone and says, "Okay, okay, you're going to get your money. Forget about this."


Bonney

The commissioner of what?


Figueroa

The person who was then commissioner of the vocational rehabilitation agency got on the phone and apologized for the stupidity of this guy. From then on it was like, "Okay, now that I've got your guys' attention, let me tell the rest of my list. I will not take orders from you," and that was it. That was my entire thing with the state. My policy was, "You guys tell me if you want this. Okay, I'll see if I can get it to you, otherwise, no."


First executive director of CIDNY, Center for Independence of the Disabled in New York, 1978

Bonney

Can we back up for just a minute and would you tell me how you got to be the executive director of CIDNY. Was CIDNY in existence when you got--?


Figueroa

No.


Bonney

So how did all of that happen and what were the dates?


Figueroa

Nineteen--oh my god, seventy-eight, I was working for the mayor's office for the handicapped in New York City and I ran into a friend of mine who actually was the coordinator of disabled student services at Brooklyn College.


Bonney

And who was that?



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Figueroa

His name was Eduardo Dogué. He lives out in New York City, by the way. Jokingly he said, "Why don't you apply for this job? We're looking for somebody to be a director of our center." He was on the board of directors of the New York State chapter of the National Paraplegic Foundation, which was another advocacy group that was national and had--a New York City Chapter had developed. They were more interested in the issues of people in wheelchairs, paraplegics and so on, transportation, home care services, and architectural barriers.

Anyway, I looked at the application. I was interested--I had just completed my master's in public administration--that's not true--completed my course work for my master's. I was working for the city of New York and I was not very happy where I was. There's something about working in government that just doesn't necessarily bring the best out in me.

I applied for the job and I was interviewed. Several members of that board, people like Marcie Goldstein--I think I mentioned before--Carr Massi, Ed Dogué. I believe Anna Fay was on the board. A couple of others liked the fact that I had a great administration role and I worked with the mayor's office, and I had a lot of versatility and was also somebody who had learned from Fred Francis and Judy Heumann. I think that was two things, and philosophically speaking you can't get better than somebody like that.

One of the people that helped get the anonymous grant and also wrote the proposal for CIDNY was on the board, and she had an interest on getting the job--a woman by the name of Julia Schecter. She was a quadriplegic, former nurse. Of course she had a good number of people on the board that were sentimentally attached to her, including somebody that I thought really supported me because she was a former member of SOFEDUP. She had been actually the president of SOFEDUP at one time, and she was also a graduate of Brooklyn College and knew me very well. The long and the short was that I understand they had two votes; they were tied. Eventually, the president had to break the tie. I believe the person at that time was Anna Fay. I don't--I kind of vaguely--because I know Carr Massi became president shortly after that.

Okay, so that's how CIDNY came about. That was the beginning, and then it was--what was almost self-destruction. Every month we would have a board meeting and if the people who voted for me were in the majority, almost anything I'd tell them would go forward. If the people that voted for me were in the minority, everything that had been done before was completely reversed. Even though some of these people are aligned, I got together with the people who had voted for me and said, "This cannot go on. We're not going to make any progress." Of course, the other group was just trying to see how long I would put up with it and jump, leave the position and say, "Forget it." I said, "No, I'm not going to give this up."

The elections were to occur for the board of NPF, as we called it, and they were the board of CIDNY. We organized a whole bunch of people to come out and vote for a new slate and essentially diminished the number of people that were on the other side. The organization went forward and within four years we had $4 million.


Bonney

CIDNY, did the center--was it one of the original ten that got funded by the Rehab Amendments of--?



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Figueroa

CIDNY got funded under the research and demonstration money. Under the Rehab Act there used to be research and demonstration money. That was the $75,000 initial grant. When we opened the organization we were just a resource center to provide home attendant referral services or PAS [personal assistant services] referral for individuals, because in New York City, at that time, that was a mess. That was an absolute, total mess. Then we started getting calls for other things, so I instructed my coordinator of services, Miss Ann Marie Tully--I think I mentioned her before--to log all the calls for different things we were being asked.

As luck would have it, my friend Fred Francis became part of the new administration in the rehab agency. In fact, some people say that the fact that I had had this incredible fight with the rehab agency, ended up that the commissioner of education decided that they needed a new group of people in there. I wasn't the only one having fights; all providers were having fights with SED.

Lo and behold, a new administration comes in. A gentleman by the name of Basil Scott was the commissioner and he was the first black man to hold a management position in that agency. Fred Francis was like an associate deputy. He became basically the second man in command. He was my school buddy, basically, my idol. Other people that came in were also probably more progressive people. Fred developed an idea that when the research money ran out that he would give me what we called "services money," Section 101 money. This is the money that they use to provide all the services--to purchase all the services under the Rehab Act. So he made an argument that it was legitimate to use this money to buy services from independent living centers.

Okay, so he and I drafted the first performance-based contract. You give us x-number of units, we give you this kind of money, dah, dah, dah, with milestones, and checks and balances. Some people on my board thought I was crazy. I said, "Look, this is the way to go. This is the way we will keep going." I had been in the administration school; I knew that it was a short time before performance-based contracts would be the way things would go with everybody.

We got our money even though the regional rehabilitation services deputy director objected to it. She objected to it all the way to Washington. We got our money. It was basically services money.


Bonney

How much money was it?


Figueroa

It came out to about $120,000, and then the second year it was practically double. Then came the Reagan years. By this time there were all the centers that got off the ground with Title VII money, but we didn't have any Title VII money.


Bonney

You couldn't get it once--?


Figueroa

Well, kind of you couldn't get it. When Reagan came in and budgetary recessions started, there was a center in Brooklyn that needed to stay open, so Fred came to me and said, "This is my problem: I either have to close the Brooklyn center forever or I can ask you to subcontract $75,000 to them--keep them open until we can do something." I said, "Yeah, I'll do that." So we kept the Brooklyn center open. The demand for services


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was humongous. My staff couldn't handle it all. So I laid off some three, four people, and I subcontracted $75,000 to them to keep them open.

The director of that center, by the way, for your information was Sue Fonfa. Her husband is a real great guy. And the deputy was Denise McQuade, who was Judy Heumann's deputy in DIA. For all intents and purposes, Denise was the front person. Obviously for me, for the movement's sake, that was the only decisions to be made. I was very pleased when Fred came to me and said, "What do you think?" And I said, "It's the only thing to do. Keep them open."


Push for state funding of independent living centers

Figueroa

Having done that we decided--I heard that California centers were getting state money. I think there was a local law AB [Assembly Bill] 204 which was passed in California. I called up either the people in either the Westside Center for Independent Living in Los Angeles or some place, one of the directors I used to keep in touch with.


Bonney

Was it Doug Martin?


Figueroa

Doug Martin, I think it was. And I said, "Can you send me a copy of this law?" We got a copy of the law. I came up to the state, and had a meeting among the six, seven, or eight directors at that point. They agreed, "This is the only way we're going to stay open."

Okay, so we started lobbying the state for state money. Basically, we wrote the law for New York State. We went to a legislator who headed the assembly committee on the handicapped. [phone rings, tape off, then on]. I don't remember what we were talking about.


Bonney

You were talking about getting money from the states with 204, and you went to a legislator who you did not name yet.


Figueroa

Andrew something. But he headed the task force on the handicapped, which he eventually renamed the task force on people with disabilities. Anyway, he took the legislation and he introduced it in the assembly, and it went to a senator, in the senate. We had a very strong senator who was a senate leader. CIDNY was in his district. He was a minority leader though, but he was very powerful. And there were some very progressive senators, particularly from downstate.

You have to remember that the Republican Party in New York--this was very important history--was very progressive because of Nelson Rockefeller. Some people across the country often refer to moderate Republicans as Rockefeller liberals. Well, that was the case, "Oh, they're Rockefeller Republicans. They're very progressive." And they're very good, towards people with disabilities. So yes, we had a lot of Republicans who said, "Yeah, we'll fund this."


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Well, the guy who replaced Rockefeller was a very more conservative Republican, and he didn't want to fund it, but we got Hugh Carey elected into the governorship, and he was willing to see it go through, except that the Senate didn't want to see it go through because they felt that what we were doing was replacing the federal money with the state money. And they didn't want it to take on any federal responsibility. Well, it's a long, long, long, long, long history on that subject alone.

Let me just say, I ran into a guy who was on the senate committee on the budget who was determined to hold this bill back. We mounted an incredible campaign: letters, phone calls, postcards. It got so bad that we actually got calls from the Vocational Rehab Agency, state officials, asking us to stop. "You've got to cut this out. If you don't cut back we won't work on the bill--this is ridiculous. Everybody's swamped." I said, "No, I'm not going to stop it. This is democracy in action." So this guy, committee aide was determined to screw me.


Bonney

Who was this guy?


Figueroa

I can't mention his name. But I got him eventually.


Bonney

You can and seal it.


Figueroa

I can't even remember his name anymore. The other day I remembered; I said it to somebody. Let me just tell you how things happened. This guy worked for the senator who was in charge of the senate budget and finance committee, who happened to be John Marchi from Staten Island. Not a bad man in many of respects, then again a little bit more conservative than most Republican senators in New York City. His aide was sitting on the legislation.

I had this young man in my office whose name was John Brenan, who was a student intern. Ann Marie was talking to him one day, and Ann Marie Tully learned that his father was very close with John Marchi. I called John into my office and said, "Ann Marie just told me that--" He said, "My father is very close to him. My father raises money for him. I've had calls for him on the phone. My father knows him well." I said, "You know John, Christmas is coming soon and I don't know how often you get to see your family." He's like, "Oh, you know, we eat Thanksgiving dinner in like two weeks." I said, "Would it be possible for you to talk to your father about the situation we're in?" And he did. His father said, "This is a good place for you," because his father knew. "My son is working at this place as a student, and these people are helping him, training him eventually, for a job that he can do." He put in the call to John Marchi and the stranglehold was removed from the legislation and the legislation went forward.

All right, now you say, "How did you get this guy? [committee aide]" I think we got twelve centers eventually funded under this legislation. But not one for Staten Island, so the borough of Staten Island did not have a center, even though every borough in New York City did. That was the only borough that didn't have one.


Bonney

And why didn't Staten Island?


Figueroa

Because the guy who worked for Senator Marchi was a big jerk, didn't care for the centers, so when he was told, "Let the legislation move and send it forward," he thought


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it was dead forever. It didn't occur to him to read it. So when the legislation was signed, I called the advocates in Staten Island, and I said, "You guys ought to have a meeting with Senator Marchi. Find out why is it that every borough has an independent center but your borough doesn't. And I'll tell you the guy's name who screwed it up."

My friend Gerry Teehan--



[Tape 2, Side B]
Figueroa

--is a blind veteran from Staten Island, and a well-known advocate and connected both on the Republican side as well as the Democrat. I told him, "You guys didn't get a center on Staten Island, and I'll tell you why." So he calls a whole bunch of people together and they have a meeting with the senator, and they said, "Is the guy so stupid to let the legislation go through and we didn't get a center?" And that was the end of that committee guy.


Bonney

Did you get a center?


Figueroa

They got their center.


Bonney

You got the center in Staten Island.


Figueroa

Yes. And Gerry said "I love doing your dirty work." [laughter]. So that's how centers came about. There was a lot of effort, a lot of people. It caused a lot of strain. There was some people from upstate New York, some more people from the Albany center, some of them from the Rochester center who thought that I was overdoing it. That I was on some power trip. I said, "No, I'm not overdoing it." It was like they thought I became the crazy-New-York Puerto Rican just looking to do whatever. In fact, some of them claimed the reason the legislation didn't go through the first time it had an opportunity to was because--this guy kept saying--"It's Pat Figueroa's attitude." It wasn't my attitude; the aide didn't want the legislation to go through. Politicians are there to lie. So I found a way to skin this guy alive, and I was happy. Anytime I can get a politician, it's great."


The Che Guevera of the disability community

Bonney

Now I heard you've been called the Che Guevera of the disabled world. How did you get that name?


Figueroa

Like I said, we were the ones who did a lot of the logistical stuff, people like Fred and myself. If we're going to have a demonstration, rally, we did a lot of the planning, et cetera. You know when we did the demonstrations in Washington and we did the marches we were the ones who kept stretching out the march. We used to go for the President's Committee, and have marches from the hotel to capitol hill or somewhere. Usually there were fifty or sixty of us. And we would make it look like 70,000 people long, because we'd stretch them out. We would make sure--like we wanted to have


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some press, somebody would fall out of the chair and that would get in the pressed. You know, this was the seventies.

So I set up this entire agenda to defeat Ed Koch. There were a couple of his people, from the transportation committee I mentioned earlier--we got together, and well, the first thing we did was send David Gortz a message, because he wouldn't get on the phone with me. I left him a message, "Ed Koch is not going to win the Democratic primary for governor, because we have over a million people with disabilities registered and we're going to mobilize them against him. No way this guy wins." This guy and his people were so arrogant. They said, "Who do you think you are?" dah dah. We're saying, "Cuomo's going to win." Cuomo wins. I had a strong dislike for Mayor Koch, maybe because when he ran against Mario Cuomo people with disabilities went to him and said, "We would like to put together a committee called Disabled Friends of Ed Koch for Governor," and obviously in exchange for some of the things that people with disabilities wanted. And he and David Gortz--I think that was the guy's name--one of the media guru--they were called New Age Political Campaigners. They pretty much laughed at the disabled community. The people who went to see these guys, some of them were veterans. I said, [slyly] "Really, is that what happened?" I said, "Well, I worked for Ed Koch for a month." I said, "We'll see what we can do to defeat him."

By the way, remember I had worked for the city of New York so some of the people in the city government knew me. They say, "You can't take this guy on, fight with this guy. He knows how to organize and knows how to plan and how to embarrass politicians--" I was going for a master's degree in planning, I better know how to plan. Think about it, you have to know a little bit about what you're going for a living.

A couple of Koch's aides who had met me said, "This guy is not somebody to mess around with. He just sued a restaurant and he won, and he's done this and he's done that. This guy is determined to see people with disabilities on subways and buses." And Ed Koch was against that. That was one of the positions we wouldn't compromise on, and we want it from Governor Cuomo. We had just had this demonstration at the MTA building where we had gotten thrown out. Remember what I said as I was being carried out of the the MTA, and I said, "We're going to beat you at the polling places." Well, that's the way we did it. We sat down with Mario Cuomo and said, "We want you to fire Dick Ravitch. We want somebody friendly to the concept that people with disabilities have the right to ride subways and buses." "Cool." He got our support. We got what we wanted. At the end of that primary campaign after Cuomo won, he had zero money to continue his campaign, and he had a disability committee (Disabled Friends of Mario Cuomo). We went out and got money from people like Helen Hayes and other people with disabilities. And so all the regular Democrats came in to support him.

Ed Koch decides he's going to have all these hearings on whether they're going to have a new office for the handicapped, and what it is going to do? They want to move towards paratransit. We're saying, "They want paratransit in New York City, we're not having paratransit. Not until the subways are accessible." So the one time he decides he's going to have this open forum meeting, I called one of his aides and I said, "I'm coming down with 200 people because we don't want paratransit." The mayor didn't show up. Then every time the mayor was going to be at a place that I didn't want him to be I would just call them and say, "I'm showing up with my people." The mayor didn't


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show up. People say he had just literally had gotten to the point where he really just was afraid of this hype.

The irony of the whole thing is that when Ed Koch ran for Congress I helped; I worked for him. I volunteered my time to get him elected because I was living in the Lower East Side of Manhattan. So this guy goes from being a super-progressive Democrat to being a conservative god-knows-what. Everybody decided to put him in his place. I was one of those people. A couple of his aides starting calling me the Che Guevera of the disability community. "This guy can do things, and he'd embarrass any politician." Cool. I said, "That's fine with me."


Leaving CIDNY

Bonney

Why did you leave CIDNY?


Figueroa

I knew you'd ask me that question. It was tough. It was tough. It was a pleasure, but it was tough. First of all, the biggest thing was the financial headaches: we couldn't borrow money; we couldn't solicit money if our lives depended on it. We had an enormous cash-flow problem: the bigger you grew the more the cash-flow balance. So keeping the money flowing was a headache, et cetera--


Bonney

Why couldn't you solicit money?


Figueroa

We could solicit money but independent living programs did not have enough assets to borrow. With the kinds of things we were doing: demonstrations, rallies, lawsuits....no way.


Bonney

Nobody would fund it?


Figueroa

Yeah, a lot of people don't give money to radical causes. [phone interruption] We couldn't get money. We had people who donated money here and there, don't get me wrong--churches and some other religious groups. But the bigger the budget--as the budget grew the more the cash flow--the more critical the cash flow became. Sometimes I had to tell my staff, "We're not going to be able to make payroll this Friday or next Friday." We used to give them two-weeks notice and it was hard, and they'd say, "Okay." They were determined to work for us.

Eventually we got a home-care contract. The home-care part of this whole thing is long, long-winded. As of two weeks ago I got vindicated, okay? My friend called me, he said, "You've been vindicated. You were right." The long and the short is that we went for a home-care contract because our original service was to find home-care providers, home attendants, PCAs, and screen them in and send them to people with disabilities. So we went for this contract. So we were able to use some of the money the city gave us to help float salaries for all people in the centers. My staff was--we had about twenty-six staff members in the center, and there were 400 people in the field who provided home care. It was a demand. I wanted to reorganize the agency to have two deputy directors to ease my load.


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I was burned out. I mean I had no private life. I would leave the office, get home around six, seven. To eat, we had to put the answering machine on because the phone didn't stop. It didn't stop. Some of them were the people on the board, others were people who knew me. It was the media. It was like this every night. And I mean [groans]. What's the point? To get away we bought a house in the Catskill Mountains, just south of here, but north of New York City, and we used to go away on the weekends because it was like, you know, I like peace and quiet. You never begin to appreciate stuff like this until you're going through it.

Then I had the experience with the guy getting shot, and somebody calling me and saying, "Did one of your people do that?" I said to myself, "This is bizarre." Then we won our lawsuit against a restaurant who refused to serve us, and they did this entire piece on television. I would drive up and park the van; when I'm getting out of the van it was like four, five, seven, eight people, a reception committee, wanting to shake my hand and talk to me, "That was really cool, really great. You really gave it to them. I saw the television last night. Checked out the program on Sunday." And I didn't want to deal with this.

What was ironic--I knew some things had gotten really bad. I lived on 13th Street and former Attorney General Ramsey Lewis Clark lived down the street, and almost every day when I pulled in he was either going down to buy the newspaper or coming back from buying the newspaper. I knew who he was and just kind of nodded and respected his privacy. I guess after a while he knew who I was. One day, when people were waiting for me to park my van, he goes by and waves, and the next day he says, "It's hard getting your privacy back." I said, "This is it." I mean I did not want to be there. I didn't want to be a person who everybody knew.

William Kunstler, the attorney who defended radicals, had an office in our building, so that was the other problem. You came into this building, and there were typically reporters and cameras downstairs waiting for the attorney. If I came into the building it was like, "We know this guy so let's take footage of this guy." "Leave me alone, I'm just going to work."


Bonney

I'm just here. [laughs]


Figueroa

I just work here.


Americans with Disabilities Act and Willowbrook

Bonney

Did you work at all on passage of the Americans with Disabilities Act?


Figueroa

I, at that point, was a soldier. My wife was now the person who was known, who had taken on the leadership in New York State and even nationally. Whereas I remember the first step towards the ADA--there was a book called Toward Independence that came out and I had some feedback on it that because I was working in the state agency. We had had some meetings in Washington, and I dealt with Justin Dart. At that time he was a RSA Commissioner. We had a lot of input and we had a lot of private discussions with


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Justin about what should be in there and how. No, I can't say I was like a principal that sat down and thought about the ADA. We were part of the people who contributed, who had input, et cetera.

Did I make calls to senators and congressional people? Yes, definitely. Were there issues where there was transportation or anything like that? Oh yeah. We knew--we had won our transportation issue in New York State, okay, and we knew that the people who were opposed to the ADA were primarily transportation providers. Remember we had said, "We're going to beat you." We had already beat the transportation providers in New York State so when ADAPT [American Disabled for Accessible Public Transit] starting hounding these providers it was great. "Go ADAPT!"

I wish I could have just left my job and gone with these guys because I said, "That's exactly what we need. These are the other guys that you really have to pound. If you beat these guys the ADA gets passed." That's pretty much what happened. When the--I think they were called APTA [American Public Transit Association]--a name for the association of transportation providers. Like I say, APTA, wherever they had to have the meetings, ADAPT was there. Those are the people you have to get.

Sure enough. Eventually they couldn't hide; there's no place they could hide. I think the political climate had switched--changed in this country. Justin and Evan Kemp and others who had had close working relations with President Bush were able to say, "This could be one of the most important parts of your legacy." For an administration that everybody saw as a caretaker, after the Reagan administration. The media always said, "Well, they're just post-Reagan."

Quite frankly, in my existence the person I have hated the most has been Ronald Reagan. I'm sorry. I think he let AIDS get out of hand. He ruined the economy entirely and he just was the anti-Christ for me--I see no reason why this man should get any kind of memorials. But anyway, that's another subject.

I think Bush wanted to do something big, magnanimous, and he did, and helped the ADA come about.


Bonney

Did you attend any of Justin Dart's--I don't know what you call them--seminars or whatever that he held across the country?


Figueroa

Yes, I did.


Bonney

What were those like?


Figueroa

We had one here in Albany. I was involved with the community. I knew all the stories. I knew there was this young woman who was developmentally disabled. Her name is Roberta, and I had met her in the capacity that I was in my job. She made one of the more moving statements at our hearings. The media caught on. Those were the kinds of things that you kind of sit back and say, "I remember when I started out. I remember when I went to Judy Heumann's apartment; there were maybe eight people there, nine people. Now you look around this room and there's almost 300 people trying to get into this room."


92

You have a woman who went from a developmental center to another developmental center. You know the way she proved she wasn't mentally retarded? Well, one day she got dressed, she walked out of the place [the developmental center], she walked about three-quarters of a mile to a mall, went shopping, got the exact change and everything. Meanwhile, everybody in the place is saying, "She's missing! She's missing! She's missing!" calling the police. Then she got back on the bus and went back to her place. After that they said, "This woman can't be mentally retarded." She was slow but she wasn't mentally retarded. Just little things like that--little occurrences that happen that people can sit back and say, "Wow, that really changed my life. It changed the way I looked at that whole area, that whole perspective." Yeah, it's always like that. She was one of the celebrities.

I didn't need to testify because it was for the people that don't have the opportunity to say these things. What was I going to say? I was the director of a center, now I worked for the state. And give what? Credence to things that I'd seen. I was a victim of bad education too when I first started. Poor transportation. Maybe I would change some of that. There's still people that were struggling.

We did one of those forums. We were very proud of that. It was very nice.


Bonney

Did you help organize it at the local level?


Figueroa

Yes, I did. I was working for the state, and we got people involved from different organizations to come out and provide transportation to their consumers.


Bonney

What department were you working on for the state?


Figueroa

I was working for the Commission on Quality of Care, which is kind of an unique agency at the state of New York. It monitors the mental hygiene system, that is the agency that provides services to people with psychiatric disabilities and people who provide services to developmentally disabled individuals. It came out of the Willowbrook decree. I don't know if you ever heard of it.


Bonney

Oh, yes.


Figueroa

So we had the P and A [Protection and Advocacy Program]; we had the CAP [Client Assistance Program]. I was director of the CAP program.


Bonney

Did you participate in any of the Willowbrook stuff in New York?


Figueroa

Yes. We were in college when the whole thing took place. I visited Willowbrook with a group from Brooklyn College. The buildings were almost all inaccessible. There wasn't really much I could do in terms of being a volunteer at a facility. We had a group that was called Policy in Action. Actually, we provided services and advocated for developmentally disabled people, parents, policymakers, and people who were in the struggle closing down institutions. We developed this entire thing which eventually ended up being housed--if I understand the history correctly--at the Center of Human Policy and Services, in Syracuse University.


Bonney

Wolf Wolfensberger's organization?



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Figueroa

Wolfensberger was also involved with that. There was some criticism of Wolfensberger's ideas in some respect--on his normalization theories. I don't know whether they were already in Syracuse, but I know eventually the whole Center on Human Policy was a big thing in Syracuse and still is.


The New York State Institute on Disability

Bonney

Could you tell me what the New York State Institute on Disability is?


Figueroa

Well, it's strange that you ask that because one of the things that has happened in New York State is we have lost some of our best leaders in independent living.


Bonney

Because of death?


Figueroa

No, no. They've moved on. In fact, we have one director who has been around twenty years--that's Joseph Bravo--the Westchester center. He was one of the directors that we trained. He's in White Plains. Just for your information, it probably has the best web site of any independent living center. There's a woman named Pat Moore in Nassau County, even though she's very low key. Everybody else--I mean every center has had several changes.

There's a gentleman in Utica by the name of Burt Donovich. He's a PhD in rehab, and he's not disabled. He's been around awhile. Rather controversial, and on a personal level I don't get along with him. He's one of those people that--if you asked Judy Heumann, "What is the role of nondisabled people in independent living?" She replies, "To be home attendants." I give them a lot more credit than that, okay. But I don't think Burt understands that when we say that people with disabilities have to be the leaders, he doesn't understand that. That has caused a lot of problems since he came on the scene, years ago and to this day.

In fact, the problems are so big that we have two associations. One is called the Association for Independent Living Centers in New York State. The other one is called COIL, Coalition on Independent Living. Almost all the directors in COIL were directors who had disabilities. This is very crucial to survival of the movement, that people with disabilities continue to be the leaders. The spokes-agent and the people who are seen as leaders. That doesn't mean that the nondisabled person doesn't have a role. I don't think they have to be home attendants. I love what Judy said, just to get a kick out of it. But you have to understand that we're the ones who sit in the wheelchair; we're the ones who experience life from here. For all intents and purposes this gentleman may have a disability, but if he doesn't go around and tell the public about it, then he's not a legitimate spokes-agent for me.

New York State Institute was set up to help harness some of the ideas and the direction where the movement should be going and bring about projects that are progressive in thinking, but that did not fit necessarily appropriately in independent living centers or that were things that parents needed to do or the advocates wanted to do. A think tank, eventually.


94

We funded a computer rehabilitation program in New York City with a technical school. Now a group of parents got together and they developed this computer program, where the computers are reconditioned and refurbished and they were given then to a disabled individual with developmental disabilities.

We also have a center now where we are going to be training youngsters to run computer technology. We're talking developmentally disabled kids from seven or eight just bring them down and teach them to understand computers. Ironically, it's in the Willowbrook development center.

The Willowbrook Developmental Center is now about twenty-six buildings where not-for-profits have set up new ventures to be better serve the developmentally disabled people who were warehoused there until the exposé of Geraldo Rivera in 1972. Interesting how history turns things around.

We did the ILUSA.com [Independent Living USA] web site, okay, and the web site was a first attempt to develop into something called a Virtual Incubator. A friend of mine--his name is Tim--and I basically had the same idea: we wanted to create a way for people with disabilities to create businesses online. Obviously a web site involves a lot of people: a web designer, an ISP [Internet service provider] provider, a graphic designer, somebody who should know marketing, and then you had people who were involved with content. So we got a grant from Bell Atlantic, which is now Verizon, to start the web site and we did. We started this web site which is a directory of resources for independent living. It is a very big web site.

We decided that at first the best thing to do was to create a directory of some of the best resources on the Internet for people with disabilities, because if you ever go to a search engine and you put in the word "disabled" or "disability" you can get now almost three, four million pages. At that time it was like 84,000. We said, "Nah, we can reduce to about a third."

We started out by finding some of the best sites, evaluating them, and putting them into this directory--a disability version of Yahoo. This is the way we started the web site, and we had a calendar of events and things. But we needed more money to do content, which we never got. But the woman who started out as my web master became very involved in W3C and she was very good. She was very proficient.


Bonney

She got very involved in what?


Figueroa

I'm going to tell you. The W3C, the World-wide Consortium on Accessibility of the Internet. They're the ones who developed the criteria for accessible web designs, et cetera.


Bonney

Did they design Bobby [a service which tests web pages for accessibility]?


Figueroa

No. Bobby was a separate thing. Bobby has now adopted most of their standards but it was different. Anyway, Kathy became very popular in those list groups. She's wonderful. She became a sensation overnight. She wanted to work from home designing web sites, so we started getting her accounts and she's doing very well. She developed her own business at home.


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Tim wanted to be an ISP provider. He's doing that. Unfortunately, we could not meet his needs through the institute because he made a deal with a private provider that we could not necessarily accommodate because we're not for profit.

So there's a bunch of little projects. There's also a project that now trains developmentally disabled individuals to be on boards of directors. It's part of them having a voice in the making of policy on boards in their own organizations. So we do all these little things.


Bonney

And where do you get your funding?


Figueroa

Government, foundations, corporations. If somebody has an idea we will help them get started, and then we spin off the projects. Most of the time, and say, "Now that you're up, you can carry on yourself." They become separate non-for-profit entities.



[Tape 3, Side A]
Bonney

Pat, were you basically finished with what you wanted to say about the Institute on Disability?


Figueroa

The only thing I wanted to say was that we don't try to go for monies that the centers are going to be in line to get, all the parent organizations can get on their own. We might be able to help them with restructuring a project or an idea, but we're not into competing for much money. For example, Olmstead is going to be a big thing in this state. We know that all the centers already are thinking of how they're going to partake in the development of the Olmstead policies in this state, which is great. So the institute is not interested.


Early interactions between independent living centers

Bonney

We've talked a little bit about some of these issues, but I wanted to go back and ask a few questions. When you were working with the independent living centers, and you were the executive director, were you in contact with other groups across the country, other centers?


Figueroa

Yes. Not only in New York, but across the country.


Bonney

How did you all interact?


Figueroa

Well, I like to study organizations. I studied many of the organizations I was frequently in touch with. Especially the successful ones. I would ask questions and based on the answers I knew and concluded certain things. I always find that the best organizations have a person that stays home and keeps the place going, and a front person. Since I was the shy, quiet type I used to let my staff do all the community work: public speaking, organizing, et cetera. Ann Marie Tully was one; Bobbi Linn was another one. There's a woman named Paula Nesoff; she was my housing person. They would go out. They were tremendous speakers. Because we were so effective and successful people like


96

Fred Francis often spoke about us, and the commissioner of rehab loved us even though half his staff couldn't deal with us.

In fact, whenever there was a request for me to speak at a conference, my staff would look at it and say, "You're not going to speak at this conference." They would call up and say, "He's not ready for prime time." That was exactly what they would say. Of course, Saturday Night Live was big during that time and that was the name of their group--the "Not Ready for Prime Time Players". They used to call me the "not ready for prime time director." Inevitably, they would insist and win over my objections.

I was known for going to a conference and pissing off half the people there. I went to a rehab conference and half of those people didn't believe in independent living, rehab professionals. I said, "I'm not going to sit here and try to convince you that this is what we do because let me tell you something, you guys can't do your jobs. You cannot do vocational counseling, for starters. You know why you guys can't do vocational counseling? Because if you knew anything about vocational counseling, you wouldn't be vocational rehab counselors." Boy, did those people want to lynch me; they wanted to charge the stage and hang me. But I'm sorry, I'm not the kind of guy that was just going to sit there and be diplomatic. I was not trying to be mean for the sake of being mean, but I wasn't going to make them think that this was going to be something, they we're going to force the movement back. They used to call peer-counseling, "coping strategies." Can you imagine?


Bonney

Did your work have any contact with the Center for Independent Living at Berkeley?


Figueroa

Yes, I did. The late Phil Draper was somebody I spoke to many times, and Neil Jacobson. I have so many other people that I forget some of them; people on staff that I knew also.


Bonney

Why were you contacting them? What were the issues?


Figueroa

Just trying to find out how they approach certain things--whether it was financial record keeping or whether it was fund-raising or whether it was this issue versus that issue. I have to say, we also used to get called from Boston and Worcester, Massachusetts, and New Jersey. The thing that was great about CIDNY was that once we were up and running and we had our year-and-a-half, whatever, people would say, "We don't have to call Berkeley anymore; we can call you guys." I said, "Well, I still call Boston and other places. They were light-years ahead of us." I believe the Minneapolis center was also one of the centers I called often.

But anyway, no, we became instrumental in helping people in New Jersey, Connecticut, upstate New York, Vermont, and some in Massachusetts. So yeah, we were in touch with many centers. It was inevitable. In fact, I remember getting a call from Justin Dart when Justin Dart did a visit of all the independent living centers. He called it some kind of freedom trail or something. I can't remember what the goal was. But he got sick before he got to New York City, so he missed our center.

It was nice. Those of us--we used to go to the President's Committee before the NCIL [National Council on Independent Living] was established. Or the Coalition of Citizens with Disabilities before that. We'd known many people since 1972 when we did our


97
first March on Washington. I think one of the greatest experiences I had, I would say, was the 1981 conference in East Lansing, Michigan. Very few people actually know about this.


Bonney

Conference of what?


Figueroa

Well, they took--the education department [U.S. Department of Education] got a grant, and they took the leadership of the independent movement, brought them to East Lansing at the University of Michigan, and we kind of brainstormed about all the aspects of the movement. I said I was the shy, quiet type, but I ended up finding myself speaking up more than anything. People like Marca Bristo--that was her first introduction to the whole thing, Michael Winter, Charlie Carr, and Chris Palames, from Starvos CIL. Barry Bernstein, he was from Vermont. Tony Serra, who came out of Berkeley, ended up in Buffalo. Ray Zanella and the other fellow from San Diego--I believe it was the people from DREDF [Disability Rights Education and Defense Fund] who coordinated the whole thing. There was--I can't remember the director of Paraquad. And Bob Funk, from DREDF.

Here I was, among the best. It was like, "Oh, this is quite a badge of courage." We had some very heated discussions, but it was all for the better. At the same time, while this was going on, some of the people like Ray Zanella and--God, why can't I remember his name?--I have a terrible mind today. He's from St. Louis. I know he's going to hate me for this--he has this thing. Anyway, these guys were developing the bylaws for NCIL, and we sat next to them. It was great. It was a fantastic experience. At one time I went to one of the other participants and said, "Am I speaking too much?" And he said, "No, you are making very astute points." He said, "I'm from New York City, so--"


Bonney

Max Starkloff.


Figueroa

Max, that's right. Thank you. Wonderful guy and wife too. Max.


Discussion of surgery, use of prostheses, medical treatment for spina bifida

Bonney

I have really just one more question and it's a follow-up question. When we first started talking about your disability, you said that you opted for surgery, to have prostheses, and then to get up and walk and use your crutches and get out of your wheelchair. Did that happen? You're not using crutches now, so what happened?


Figueroa

I decided that the world should change. Why should I change? The world needed to change. It wasn't just me who couldn't get up those steps, and up and down the sidewalk without a curb-cut. There are a lot of old people these days. There will be even more old people and mothers with their baby carriages, and pregnant women, and people with diabetes and oversized people and people who are challenged in many other respects. The world needed to change.


Bonney

Did you actually try to get around for a while on crutches?



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Figueroa

Yes, but I realized it was like a struggle.


Bonney

How long did you do that?


Figueroa

About a year. I was able to get around on crutches even up to maybe ten years ago. It's just that after a while, actually, crutches really destroy your arms--your shoulders and your rotator cuff. I was lucky that I gave them up early because I was able to do so many more things. A person in a wheelchair also does harm to their arms, rotator cuffs, elbows, et cetera.


Bonney

What's your impression of the medical profession in relation to people with disabilities?


Figueroa

I think there's a lot to be done in the medical field about people with disabilities. I'm talking about the mainstream person with disabilities, talking about the typical paraplegic or quadriplegic.


Bonney

You and me.


Figueroa

I'm a spina bifida--we're weird. The doctors just discovered--the doctor was reading an MRI report the other day that was three years old. The report says, "The images reveal that his spinal chord has been crushed at a C2 and C3 level above the vertebrae." This guy's looking at this report and saying, "It can't be. It's impossible. You would be a C3; 4 quadriplegic." He says, "Well, I guess you lied." He says, "I want to see these images. This is impossible. Look at your arms. I checked your arms. At one time you had twice the muscle power you have now." So he sends me to have my neck tested with the nerve impulses--the electrical nerve impulses. He's like talking to himself. He says, "I'm glad you're going to see a specialist in spina bifida because," he wants to know, "I want them to tell me how you're wired. If this is true, how can you have use of your legs?"

There are medicines that I get that have terrible side effects on me. When I was younger it probably didn't do anything to me. It wouldn't bother me. I take it now, and it does affect me. Unfortunately, it's not just the age; it's the fact that your enzymes and your chemical levels are different, and your autonomic system is different. Doctors don't have any understanding of that. Even if you go to a urologist who makes every effort to find out things before he does something.

I had surgery, three years ago, because my urologist thought I had cancer in my testicle. He went in there and found out there was no cancer. He went looking for answers, and somebody said, "That guy has Spina bifida. All his chemicals are off." He felt like a fool. I said, "Well, you did the right thing." It actually gave me relief of the pain I was having anyway.

You have to be careful because if you're fragile, if you're of a small size, all the chemicals--all the measurements for pretest medicines are for people 6'10"; I'm 5'10" and seventy pounds. You go to have a CT Scan done and they want you to drink a large portion of dye. "We want you to drink six cups of this." You say, "How much would somebody of ninety pounds drink?" "Uhhhh?" They're lost. "I'm sorry, I want to know how many of these." I would repeat: "Well, bring me to the doctor. Bring me the manual." I went to one place and I just threw a fit. The guy came out and says,


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"Actually, you don't drink six of those. You drink one and a half." I said, "That's all I want to know." If you have consequences as a result of an overdose, its your problem. And we have fairly good medical care around here. Maybe not as good as New York City, or at least in the nice places in New York City, but above average, and people are well read on different things. But you have to be careful.

My thing about the medical profession--there is a need, a massive need, to get information, whether it's via the Internet or whether it is through some hookups to some kind of clearinghouse where doctors can go in and say, "This is what I'm up against when I'm treating these patients for this purpose." We've heard of the tragic things that have happened--the wrong medicine that was administered to somebody who was quadriplegic, put him in a coma. Never came out of it. Doctors tell somebody, "We're going to do surgery," and, you know, somebody with a disability typically has bad lungs. I have asthma. Right away I go to my asthma doctor and say, "What do I need?" He says, "I'm going to put you on Prednisone, two, three, four days before surgery." My allergist told me anybody over fifty who was not in great shape, should avoid having general anesthesia. It's better to--if it's a knee problem, localize it. If you don't have to go under for anything, don't do it. That was a general rule. You see these elderly people being put under on general anesthesia, and you hope they have good lungs.


Bonney

One other question. You said that you all looked up to the independent living centers in Boston as being light-years ahead of you. How were they ahead of all of you?


Figueroa

Well, all the centers had good funding. They had a lot of literature out. Not only Boston. There was a center in Worcester, Massachusetts. There was one in the east part of Massachusetts--I can't remember if it was North Adams or one of those areas. They really had already gone through a lot of things.

There were a lot of things we also looked at centers for and we rejected some of the things that they were doing. For example, just before we went for home care--we were fighting for the home-care issue in New York City--we realized that in Massachusetts a lot of the centers are involved in certifying the client, that is to determine how much or the extent of the client's needs and how many hours they're going to get. I said, "That's a conflict of interest. We don't want to do that." All we want to do is provide the client with service once they are certified for services.

Will we help the client maximize the amount of hours he or she should get? Yes, all the time. These people come in here with six hours, and we'd say, "We can get you up to twelve hours. This is what you have to do." Do I regret it? No. I didn't want to be the person sitting there saying, "According to this, you're only entitled to four hours a day." And the person goes, "No, I need eight hours a day." I mean, I don't want to deal with that. That puts you in an adversary position with the people you're trying to help. So in some respects we saw centers doing that and we said, "We don't want to do that." Some centers do and some centers don't.

There are things that are going on around New York State right now. There's a center that's for mental health services. There was a center closed because they wanted to set up housing for senior citizens and people with disability. New York State law prohibits this, even though the center was going to do it through a subsidiary, not as a direct service. There are people doing stuff that is just not within the realm of disability. There


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was a problem in Rochester. There was a big fight there with the established center to the point that a new center had to be created. Now they have two centers in Rochester.

Once you have strong advocacy groups and you're not doing it right, somebody's going to come down your throat. I'm on the SILC [State Independent Living Council] now and I have no sympathy for centers who are not doing what they're supposed to do. I'm also on SILC monitoring committee and I say, "No, you're not doing it according to this." If you want to be a UCP just change your name to UCP. Don't destroy everybody else's reputation by saying you're an ILC, but with the philosophy of a UCP.


Family relationships, attitudes in Puerto Rican culture about disability

Bonney

I have asked you all the questions I want to ask you. Have I not asked you something that you wanted to talk about?


Figueroa

No. I mean you started to ask me things about my family. It wasn't I did not want to talk about my family, but you always look back and say, "Okay, we all live in one family, okay, and we all have ways of comparing how everybody else lives. Part of people's makeup comes from their family." I can say my family's always been very supportive, but they also have had some hardships.

I had a brother who took my wheelchair to be repaired in the dead of winter in New York City and took a taxi to the place, 14th Street--we used to live at 106th. On the way back not one cab would stop for him so he walked all the way back over 100 city blocks. Now what can I say, you know, how do I make that up to my brother?


Bonney

Because he had the wheelchair with him, you mean, cabs wouldn't stop?


Figueroa

Yes. These are the ideas. My sister used to go and buy me my art supplies when I was in Art and Design high school. The school bus would bring me to school and back but wouldn't stop for me to buy my art supplies. So you say, my family's been very supportive. I wouldn't be here if it wasn't for my older sister. She's the one who said, "I'll put you up. You can find your own place later." Her husband was great. He passed away too young because he was a little reckless; he didn't take good care of himself. Now we're all getting old.

I miss my brother who's in Arizona; I haven't seen him in a while. He had a little medical scare last year. My oldest brother, who I see quite often, but now I haven't see him in two years. He's in New York City. My sister I've seen more often. They just recently moved out to the Pocono Mountains, in Pennsylvania. Then I have two brothers in Florida. One of them I haven't seen in four years. He used to be a jockey, a very successful jockey. I've spoke to him maybe two years ago. He's fine. It's not that we weren't close--my brother, we are all close--it's just that life has consumed us from each other. It's kind of difficult.


Bonney

Let me ask this: you came from sort of a third world country--not exactly, but a Hispanic background and all of that--which notoriously has the reputation of not being


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real supportive of a disabled member, maybe hiding them at home, keeping them out of sight, having not very many expectations for them. Was that the way it was with you in Puerto Rico and when you came here? If not, why was your family so different?


Figueroa

My family was not like that. I was not hidden. I don't know. My father was a very, I would just say, strict man. He was very much into the macho, machismo system. But I carried his name. For some reason he gave me his name. I wasn't supposed to last more than two days. I don't know if it was a badge of honor, or a blessing, or something. He put up with a lot from me in many respects, even now. I mean I'm the toughest one on him in his grumpy old age. He's made some horrible decisions in his life. I tell him, and the point is made, the consequences are spelled out, and what's going to happen. Then when it happens he sits on the phone and he says he's depressed, he wants to die, I say, "Don't give me this. You don't want to die." So I'm tough on him. It's like the song, The Cat's in the Cradle, by Harry Chapin--"My son, he's just like me...an S.O.B. I'm so proud of him."

My mother tried to teach me how to write, okay. My mother was right-handed so I'd pick up the pen with my right hand. My father tried to teach me math. My father was left-handed--I'd pick up the pen with the left hand. For a while I was so confused. I didn't know which hand was supposed to be the one you used. I was ambidexterous.In Puerto Rico, yeah, I think there was a tendency to want to keep at home people who had birth defects or deformities. But my parents were different. They didn't think of me as deformed. I think my mother's Catholic interests and her faith, her involvement with religion--even though my father was pretty much an agnostic, my mother was very involved in religion. She followed it closely. She didn't go to church every Sunday but she's the kind of person, if you needed money, go to church, so you say a prayer and God will respond. She was a sweet lady. She was the person who kept an eye on me and tried to teach me how to read and write.


Bonney

So which are you, right- or left-handed?


Figueroa

Actually, I became a right-handed. I resent it because I use my left hand; it has more power. But my right hand was my drawing and writing hand. I had carpal tunnel surgery five years ago on my right side. Never been the same since. But you know, I like being home. After all, I like drawing and painting, and fixing things. When I was a teenager I became a day dreamer. So when I was not writing, drawing, or painting, I was day dreaming. Mostly about my future what I was going to do when I got out of high school.

But, you know, my mother is the one who gave us a lot of discipline and stuff. She was not strict, she used common sense. My father made us lunatics. My father made us all overachievers. It was all my brothers, all my sisters also. My sisters all tend to be more religion based. My brothers hard workers.

I think in Puerto Rico you saw families who had a lot of faith and they would bring their children out--disabled or not. To be honest with you, when I was born there were no wheelchairs. Don't get me wrong, but it wasn't like I think that it dawned on my father to buy me a wheelchair. When he realized how well I got along without a wheelchair, so it was like, "What the hell for? He can't walk but he can get around on his two arms and his stumps better than anybody else." To him it was, "Yeah, I know he's disabled but he can do everything everybody else does."



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Bonney

To you, as a child, how was that?


Figueroa

I don't know. I think the only time you begin to feel self-conscious is when you start saying stuff, "Oh, wait a minute. What, you're supposed to do is be attractive to the opposite sex?" Then it was like, "Okay, so I'm not attractive to the opposite sex because I have a disability. Tough shit." That was it. Fortunately, I did not have a problem with the opposite sex. But there's more to life than the opposite sex.


Bonney

Just write it off.


Figueroa

Write it off. Ironically, once I came to the United States and I had my self-esteem lifted, I had luck with women, sometimes I wanted to just kick them away. But I was never one of these people who was like, "I'm not good looking, therefore...." It was funny that you asked that because it's the only time you say to yourself, "What is life about? About being attractive to the opposite sex, getting married, having a family, and then re-doing all the mistakes your parents did?"


Bonney

Pat, thank you very much. It's been a great interview.


Figueroa

Okay, it was my pleasure.


Sharon Bonney

Research Interviewer/Editor
Regional Oral History Office
Disability Movement History

Sharon Bonney received a B.S. in Communication and Journalism from the University of Illinois and an M.A. in Public Affairs from the University of Iowa. After working as a reporter and freelance writer, she Established the Services for handicapped Students Office at Iowa before working in the Department of Rehabilitation as a client advocate in Tennessee.

In 1979, Ms. Bonney became director of the Physically Disabled Students' Program at UC Berkeley for nine years. She later was the assistant director for the World Institute on Disability. Since 1996, she has been an interviewer/editor for the Regional Oral History Office at UC Berkeley for the Disability Rights and Independent Living Project.

Her professional activities include numerous publications on disability issues; founding member, president, treasurer, and conference chair of the Association on Handicapped Student Service Programs in Post Secondary Education (now known as AHEAD); participant in the White House Conference on Handicapped Individuals; and current member of the Society for Disability Studies.

Ms. Bonney has muscular dystrophy and is a wheelchair user.

About this text
Courtesy of Regional Oral History Office. The Bancroft Library. University of California, Berkeley. Berkeley, Calif., 94720-6000; http://bancroft.berkeley.edu
http://content.cdlib.org/view?docId=hb2q2n990w&brand=oac4
Title: New York Activists and Leaders in the Disability Rights and Independent Living Movement: Vol II
By:  Bonney, Sharon, 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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