Regional Oral History Office University of California The Bancroft Library Berkeley, California

Disability Rights and Independent Living Movement Oral History Project

June Kailes

DISABILITY RIGHTS ADVOCATE AND POLICY CONSULTANT: DIRECTOR OF WESTSIDE CENTER FOR INDEPENDENT LIVING, LOS ANGELES, 1981-1989

Interviews conducted by Kathy Cowan in 2002

Copyright © 2007 by The Regents of the University of California ii

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 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.

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All uses of this manuscript are covered by a legal agreement between The Regents of the University of California and June Kailes, dated February 4, 2004. 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.

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

June Kailes, “Disability Rights Advocate and Policy Consultant: Director of Westside Center for Independent Living, Los Angeles, 1981-1989,” conducted by Kathy Cowan in 2002, Regional Oral History Office, The Bancroft Library, University of California, Berkeley, 2007. iii

June Kailes, mid 1980s iv v

ACKNOWLEDGEMENTS

The Bancroft Library's Disability Rights and Independent Living Movement Project 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. Additional interviews on “Antecedents, Implementation, and Impact of the Americans with Disabilities Act” were completed for the project under a 2006 contract funded by DBTAC-Pacific ADA. Any of the views expressed in the oral history interviews or accompanying materials are not endorsed by the sponsoring agencies.

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. Special thanks go to Professor Raymond Lifchez for his generous donation in 2006 in honor of Susan O’Hara.

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Table of Contents—June Kailes

SERIES HISTORY ix

INTERVIEW HISTORY xvii

Interview #1: July 18, 2002

[Tape 1] 1

Childhood and family in New York 1

Disability, special school in early years 2

Mainstream school in middle years 4

Hofstra University: early activism in PUSH and DIA 8

Decision to attend USC graduate school in Social Welfare 14

Internship at Rancho Los Amigos Hospital and graduate thesis on sexual counseling 18

[Tape 2] 19

Accessibility changes at USC 22

Hired at Rancho Los Amigos Hospital, 1973; Sexual Attitude Reassessment 23

Lessons learned from Rancho Los Amigos, CIL Berkeley, and Olive View Community

Mental Health Center 25

Beginnings of Westside Center for Independent Living, Los Angeles, 1976 27

Goals and visions of WCIL 31

Peer Counseling and services at WCIL 32

Bringing growth and change as director of WCIL, 1981-1989 36

Services, the philosophy of independent living, and the importance of advocacy 37

[Tape 3] 38

Work on the national and state levels, NCIL 39

Battles and complex issues at WCIL 42 viii

Thoughts on disability community, the ADA, and independent living 44

Focusing on health issues as advocate and consultant 50

Clinton appointee to the Access Board 52

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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. x

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 xi

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. xii

The project Web site (http://bancroft.berkeley.edu/collections/drilm/) includes the full- text of most of the completed oral histories. It 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 phases I and II 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, xiii 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 xiv

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 xv 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 more than 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. Additional interviews on “Antecedents, Implementation, and Impact of the Americans with Disabilities Act” were completed for the project under a 2006 contract funded by DBTAC-Pacific ADA. Any of the views expressed in the oral history interviews or accompanying materials are not endorsed by the sponsoring agencies. xvi

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. Special thanks go to Professor Raymond Lifchez for his generous donation in 2006 in honor of Susan O’Hara.

Ann Lage, Project Director Regional Oral History Office The Bancroft Library University of California, Berkeley August 2007 xvii

INTERVIEW HISTORY—June Kailes

June Kailes was invited to participate in the Disability Rights and Independent Living Movement oral history project because of her activities as a disability rights advocate and consultant, and for her leadership in the independent living movement as executive director of the Westside Center for Independent Living in West Los Angeles in the 1980s.

Ms. Kailes recalls her early days as an activist, beginning at Hofstra University. She describes her growing awareness of the need for disability rights and independent living skills after moving to California to achieve her MSW at the University of Southern California. She speaks of the early days of the Westside Center for Independent Living, her work in the peer counseling program there, and her years as the WCIL executive director. In the interview, Ms. Kailes offers insight on the disability community, independent living, and the Americans with Disabilities Act.

The interview took place in Ms. Kailes’s room at the Marriott Hotel in Oakland, California, on July 18, 2002. Ms. Kailes was in Oakland to participate in a meeting of the World Institute on Disability. She has been on the WID board since 2000. It was a first time meeting between the interviewer and Ms. Kailes. The room was quiet and there were few interruptions.

The transcript was lightly edited by the interviewer and reviewed by Ms. Kailes, who added a few corrections but no substantive changes. Most of the more than one hundred oral histories conducted for the Disability Rights and Independent Living Movement project are on line at http://bancroft.berkeley.edu/collections/drilm/. Audio and/or videotapes of most interviews are available for listening in the Bancroft Library.

The Regional Oral History Office was established in 1954 to augment through tape- recorded memoirs the Bancroft 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, The James D. Hart Director of the Bancroft Library, University of California, Berkeley. The catalogues of the Regional Oral History Office and most of the collection of oral histories can be accessed at http://bancroft.berkeley.edu/ROHO. Kathy Cowan Interviewer

Berkeley, California February 2004

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Interview 1: 7-18-02 Tape 1, Side A

Childhood and Family in New York

Cowan: June, let’s begin with your early childhood and your earlier years. Where were you born?

Kailes: I was born in Rochester, New York, and I lived there until I went to college.

Cowan: Oh, in one house the whole time?

Kailes: Two houses.

Cowan: Two houses?

Kailes: I just saw that old house a couple weeks ago when I was up there, both houses actually.

Cowan: How about your parents- what were their names and what did they do?

Kailes: My parents still live in Rochester, and my father was a dentist, a general practitioner dentist. My mother wasn’t working until we were in probably junior high or high school. She worked in the area of mental health and worked with kids in schools that were targeted as kids who could have problems unless they had someone to assist with some early intervention. It was a Primary Mental Health Project at the University of Rochester. It was experimental at that time, but it grew into a large national program.

Cowan: Oh.

Kailes: So my father, it was interesting, I never knew this but before I was born he used to volunteer or work one day a week with kids with disabilities, at UCP [United Cerebral Palsy]. He would help provide dental care long before I was around.

Cowan: Both of my parents worked in fields that are connected.

Kailes: Yes.

Cowan: What about siblings—did you have brothers and sisters?

Kailes: I have one sister, two years younger than I am. 2

Cowan: You were born with your disability?

Kailes: Right.

Cowan: What was the effect on your family? What was the reaction—well, of course you don’t remember when you were born, but as a young child?

Kailes: That was not in focus for me until I was older. I guess they struggled, and my mother must have been the primary person to pay attention to all the issues about who to go to for what kind of assistance. She was the one who would run interference or advocate on my behalf when I wasn’t able to, willing to, wanting to, or knew how to. I think she was often the primary person who would get information and talk to people. I think she got involved early on with UCP in Rochester and got involved in the state UCP organization and the local center there.

Cowan: What kind of kid were you?

Kailes: They say that I usually said what I felt and that there weren’t any secrets about what I wanted. I was a kid who felt that I needed to be a boy and not a girl, and I actually told people that I wasn’t going to respond to my name and that I was changing my name to Jimmy. I think that had to do with the fact that I perceived that boys had it easier and they had a better life, and so I wanted their life. I liked their toys. I liked their interests. I liked their things better. And their clothes were certainly better, more comfortable. My mother liked to dress me in these awful frilly things that I couldn’t stand; plus there were dress codes about girls wearing dresses and skirts. I just hated all that stuff so I would rebel in that way. They tell me that I refused to do certain things. I was a collector. I would collect everything. I loved cowboys and Indians and I would spend hours playing with them, and soldiers. I liked to play with the boys next door because I always felt they had more interesting play things, you know, than girls had. That was kind of fun. [laughter]

Disability, Special School in Early Years

Cowan: Did anybody try to restrict your activity or did you have any difficulties?

Kailes: My disability affected my balance, my walking, my writing and my coordination. Early on I did go to a nursery school that had other kids that had disabilities. I wasn’t integrated into a regular school until the third grade. They put me in braces for a while. I thought that kind of 3

restricted my activities because walking wasn’t as easy. I didn’t think the braces helped much, but what did I know. They got in my way so I would try to not wear them whenever I could. They were restricting. I think my mother always had the attitude that if you want to do it then go do it, and my father’s attitude was always more, “Be careful, be cautious, don’t take any risks,” that kind of thing.

Cowan: That’s the opposite of what it usually is, I think. It’s usually mothers who—

Kailes: Is it? I don’t know. A lot of my friends with disabilities have very, very strong mothers, very strong advocate type mothers. I can see some patterns, but maybe you will see this differently from the other interviews you have done.

Cowan: Did you think of yourself as a child with a disability?

Kailes: No, I didn’t. I had no clue! Even though I was in a nursery school with other kids with disabilities, it never occurred to me that I had a disability. Until one day I was in a department store and some woman said to me, “You know, if you keep walking that way, you’re going to walk that way for the rest of your life.” I thought, “What is she talking about?” I had no clue, I had no awareness. I don’t know. I must have lived in some fog land or something. I had braces when I was a little kid and I don’t even remember that part. But I do remember the special education from kindergarten through second grade. I remember having a lot of friends there and they all had disabilities. I wasn’t going to the school my sister went to, and it wasn’t until the second grade teacher said to my parents that, “She doesn’t belong here. You could send her to the other school.” Of course, nobody asked me what I wanted, not that I would know. So they sent me to the regular school for third grade. I do remember missing all those kids with disabilities. But I didn’t really identify having a disability.

There was a guy who lived in the first neighborhood that we lived in who had CP [cerebral palsy]and who walked around the neighborhood selling pencils. I thought to myself that that was nothing that I was interested in doing and if that’s what they had those kinds of people doing then I needed to not be anywhere near them. When somebody would say something about my disability and I’d go, “What disability? Not me!” [laughs]

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Mainstream School in Middle Years

Cowan: As school went along, when you got into mainstream school, did you encounter more people pointing it out to you?

Kailes: My mother sent me to an OT [occupational therapist] to learn how to type because my writing was so slow. In second grade, I was typing, which was really a good thing because I was kind of precocious. I would send away for things that usually you wouldn’t want a kid to be looking at or knowing about until they were in late high school.

Cowan: What kinds of things were those, for example?

Kailes: The first thing I sent away for was a muscle building program because I thought I could carry my electric typewriter if I had stronger muscles.

Cowan: Charles Atlas?

Kailes: Exactly. Now what could I have possibly been thinking? That was the first thing. From there it went to, I found a book that said, “A Thousand Things You Can Get For Free in the Mail.” So I would get more mail than anybody else, because nobody knew there was a kid sending away for this material— Then I got really clever and I started getting things in brown envelopes.

Cowan: Oh! [laughs]

Kailes: I had the best sex education very early on. I had things you would not believe.

Cowan: Did your mother and parents become aware?

Kailes: I don’t think they ever knew about that stuff early on. They just thought I was getting it from that little book, “A Thousand Things You Can Get For Free.” And since I collected everything they just figured it was the usual stuff I was getting..

So the typing was significant because at the regular school they said, “Well why don’t you bring your typewriter to school because then you’d be able to write better and faster?” I didn’t want to do that because that would indicate that I was different and I didn’t want to be different. If I was different they wouldn’t let me do what everybody else was doing, therefore I couldn’t possibly admit to needing any kind of help because then I would be classified as “Can’t do” and “we won’t allow you to do.” So I wasn’t going to accept any kind of accommodation. 5

Cowan: So you were aware so early that that would be the result.

Kailes: I got that message subconsciously. I’m sure I could have never ever verbalized it in this way. But it’s like the boys had more fun and it was like “those people” had no fun, ever, and I wasn’t going to go there. So it was unconscious kinds of messages that you get, or preconscious. In the essay that I gave you to read, it says that I found a spelling test from the sixth grade that said “F. You haven’t passed a spelling test in at least six weeks.” I thought well, that’s because for me it wasn’t a spelling test, it was a memory test because I was writing word one and the teacher was on word six. I was just trying to keep up with getting the word written down. That was how bad it was.

Cowan: You mean, she spoke faster than you could write so you were trying to remember everything she said from the time—

Kailes: Right. I couldn’t write very fast but I wasn’t going to bring in a typewriter. The thing I agree to was a second set of books so that I wouldn’t have to carry the books back and forth to school all the time, especially in the winter, in the snow and the ice. Then they thought I would do better in private school. They were going to send me to a private school because some of the teachers were good with me and some weren’t. I said, “I don’t want to do that. I have friends here and I’m not doing it.” So I was that kind of kid, too.

Cowan: Determined and individualistic.

Kailes: Yes.

Cowan: So how was high school? Did that continue on the same pattern—you chose your own path?

Kailes: I had friends and none of them had disabilities. I really did miss not having any friends with disabilities. I knew there was something missing, the peer thing. I really knew that. High school was okay. I had a group of friends and I tried to do everything they did. I had a boyfriend. I don’t think we really cared for each other that much, but it was like a ticket to do everything that everybody else was doing. High school was okay. The differences came around physical education where they really didn’t cope that well. You could sit around and they’d let you play golf or Ping-Pong, or things like that. They could have been a lot more creative, but I was glad to get away with what I did. I tried to get away with as much as I could, but I didn’t have any disability identity.

Cowan: None. 6

Kailes: No, none.

Cowan: And you weren’t encountering discrimination or—?

Kailes: Yes, I did. One instance that I know of. Now, I’m sure there were more times. I’m sure that my mother ran interference for me more than I know or wanted to know or cared to know. [laughs] But there was one time where I did know it was discrimination. I applied for a job in the library when I was sixteen. They said I couldn’t have the job, though I knew I could do this silly job, you know, there was nothing to it. They said I couldn’t have it because I couldn’t carry the books up the steps and I couldn’t shelve the books on the higher shelves because you had to climb a ladder. I thought to myself, “Why can’t they carry the books to the second floor and why can’t somebody else shelve the higher books,” but I never would say anything because that would admit that I was different and I didn’t want to not fit in. I thought that was discrimination, but way back then it was hard to finger it, classify it. And I certainly didn’t have any skills to disagree with or to assertively say, “I can do that. I can do that.” I had no self-esteem to do any of that stuff.

Cowan: What kind of experiences were you having with the medical community?

Kailes: Well, I wasn’t one of those people who had to encounter all those unnecessary surgeries. I didn’t have any of that stuff. All I had was physical therapy while I was in the special education.

Cowan: Early on, but not when you were in high school?

Kailes: Early on. After I left the special ed I didn’t have anything. Nothing, nothing at all. They left me alone.

Cowan: So you weren’t being treated as a sick person when you saw your family doctor?

Kailes: No. I was just trying to pass on through.

Cowan: Well, when you got toward late high school and began to look on toward college, what was going on with you then?

Kailes: I still was missing people with disabilities. I knew that I missed those kids that I once knew, so I looked for a school that would have some people with disabilities.

Cowan: How do you remember that you knew you were missing those kids? 7

Kailes: I remembered. I just had feelings like, you know, boyfriends from way back in the second grade and things. It was just intuitive. It just would come to me. Unfortunately I never had any more contact with any of those people from the special education experience.

Cowan: So something was brewing in your brain.

Kailes: In the back of my mind, yes. I was very aware of that, I think, because I went to regular camp and all that.

Cowan: And didn’t see children or teenagers with disabilities ever?

Kailes: Never, none, zero. Zero! I once had a Sunday school teacher who was post-polio, but I hated Sunday school so much that I couldn’t even relate with him. I didn’t even think we had anything in common. Now I think that was strange. But I just hated everything about Sunday School. I just didn’t want to be there.

And of course there was nothing on TV about disability, so that was an ominous sign to me that they lock those people away and you better not be one. I remember in camp, this was another asking for help issue, that there were steps that were very hard to get up into the cabin. I always had to get help going up the steps because there was no railing. It never occurred to me to ask them to put in a railing, I mean, what was that about? I think about that now and ask, “What was wrong with you?”

Cowan: Well, children didn’t ask—

Kailes: I wasn’t a child. I was either sixth grade or seventh grade. I was always on the older side of young.

Cowan: I wonder if it’s different today. I wonder if young people feel more empowered to say, “Would you put a rail in here?”

Kailes: Oh they do, oh they do. The ones I met, oh yes. It’s a different world.

Cowan: That’s good.

Kailes: Well, I just hated it, I mean, it would have been simple. Why that never occurred to me to just—ask for a railing.

Cowan: Well, do you think you would have had to be thinking that you deserved to have a rail or you had a right to have a rail, or—? 8

Kailes: I don’t think it would have been thought about in a rights context. It would have been thought about in a practical context, nothing about rights. Who knew about rights? No one I knew knew about rights.

Cowan: Nobody. Yes. Then toward late high school you were thinking of going on to college for what reason?

Kailes: Oh, it was just what people did.

Cowan: It was. [laughter]

Kailes: It didn’t seem like there was a choice. Besides it meant I could get away. I really did want to get away because my sister and I never really got along that well. She thought I got all the attention because of my disability, so she actually always had more going on than I would to get the attention. She was always a pill to live with and it was kind of misery, misery.

Cowan: Did you have a complete choice? Were your parents able to send you anywhere you wanted to go?

Kailes: I had some help from Vocational Rehabilitation.

Cowan: How were you connected with them?

Kailes: In late high school somebody mentioned that I would be eligible. So I went for testing and they told me what I should do, that I should be a teacher. Well, nobody even back then told me what I should do. So that was the last thing I was ever going to do. “No, I’m not doing that!” [laughs] “No way am I doing that!” But they did pay for some of college and they did pay for books.

Cowan: So that was New York State Vocational Rehab that helped to pay and helped to encourage you to go?

Kailes: No, they didn’t encourage. I was going to go anyway, but they were an added nice benefit assist.

Hofstra University: Early Activism in PUSH and DIA

Cowan: How did you pick Hofstra?

Kailes: Well, that was a school that got an early Ford Foundation grant to improve access. I thought there must be people with disabilities there if there’s access. 9

Cowan: How did you hear about that?

Kailes: My mother and I went to visit the schools that I was interested in. I liked New York City. I’d been there once before and I thought that that would be a really cool place to be near. We visited the schools Adelphi and Hofstra and Stonybrook. All Long Island schools. And Buffalo.

Cowan: Where’s Hofstra?

Kailes: On Long Island.

Cowan: On Long Island?

Kailes: Yes. I liked it. I saw it. I talked to people there. It seemed like a nice place.

Cowan: And you noticed that it was accessible more than other campuses?

Kailes: I noticed it was compact, and I noticed that Stonybrook was hilly and spread out. Adelphi looked pretty compact too, and Buffalo was doable as well. But the location I liked. Somehow I got the message that there were people with disabilities there. So they accepted me and that was where I went.

Cowan: What did you study? What was your plan? Did you have a plan?

Kailes: I had no plan. [laughter] I majored in psychology because I thought I wanted to work with people. I really liked it there a lot. I lived on campus and I got really involved in student government in the dorms and really led the fight. It was the late sixties. The first battle was—I got there and the policy was no boys in the dorms except on Sunday and something about “Keep the door open and your feet on the floor.” There was a curfew and I thought, “Well, this isn’t right.” So by the end of that year we had twenty-four hour visitation and no curfew.

Cowan: Whose fight did you join or who joined you in the fight?

Kailes: We all fought for it and we won.

Cowan: Everyone in the dorms?

Kailes: Well, a core group. So that was very empowering, early. It was ’67.

Cowan: How did you connect with that group?

Kailes: I don’t know. It was a dorm. I was appalled by the policy. I thought, “That’s not the way it should be. This is college!” I got really involved 10

and became the president of the dorm, and just had a good time. I ran into all kinds of opportunities. I liked New York City so I wanted to go into New York City a lot. I found out that a lot of people there never went into the city. I thought, “There’s something wrong with this.” So I organized bus trips into the city on Friday and Saturday night with theater tickets. I think I saw every play there was. Here was this kid, I must have been eighteen or nineteen, and I was signing contracts with this bus company for forty dollars a round trip, renting a school bus, renting a driver. Nobody ever saw what I was doing. Nobody ever said anything. I would go to the student union and have signs printed out. I would have the money collected at the student union desk and I would just run these trips.

Cowan: Completely on your own?

Kailes: As I remember, nobody ever said anything. A kid would never get away with that today.

Cowan: Oh no, liability.

Kailes: It’s incredible that I did that then, just because I wanted to go to the city!

Cowan: It says a lot about you as well as about the time.

Kailes: Yes. I thought, “Well, look what I can get away with here!”

Tape 1, Side B

Cowan: After organizing the bus trips, which sounds like an amazing thing and a leadership thing to do, what was your next big—?

Kailes: I also saw there was a disability group and I kind of didn’t want to associate at first, but did. So I would kind of dab my toes in and knock and say yes and no. But eventually I did get involved with the group of students with disabilities, because there was a lot on the campus that wasn’t working access-wise for people. Even though the school promoted itself as a fairly accessible place, it really wasn’t that accessible. But I didn’t have a lot of those issues because I was a “walky” so I could pretty much get around.

Cowan: What were some of the big issues?

Kailes: Oh, people just couldn’t get into buildings because there were just steps and no elevators. They had the testing thing down though, and I did take advantage. By the time I got to college I knew I needed to type those essay tests so I did. Finally I gave into that. I don’t know if 11

that was late high school or early college but—. And there was no problem doing it, you know, they had that all set up and that made life easy. There were a lot of issues that students were dealing with about accessible transportation. I got to be friends with a lot of people with disabilities and people without. I went back and forth between both worlds of friends all the time. I always did that whereas a lot of people don’t. They stick with one group or another. The students with disabilities would have weekly meetings, and I would go even though I was ambivalent. I didn’t want to associate, but I really did want to associate. I even went out with somebody with a disability, and I had a real hard time with that.

That’s when I began to realize that this wasn’t about my problem with people with disabilities this was about my problem with me. So that was a revelation. I took a course on psychology of disability and that really helped me sort some things out for myself, figure out things. I became really good friends with a lot of people with disabilities, and without.

Cowan: Was there a group formed?

Kailes: There was a group, a political group—PUSH. An awful name: “People United—something—for the Handicapped.”

Cowan: “Support” of people—?

Kailes: “People United”—maybe for services or something?

Cowan: Denise Jacobson wrote, “People United in Support of the Handicapped,” and she said, “Be sure you ask June about PUSH.”

Kailes: Yes, it was called PUSH. We would get together once in a while with people from other campuses. This was a group called DIA—Disabled in Action. There were transportation issues. Transportation was the prime issue, the buses and— I just sat there intrigued by the whole thing because it wasn’t totally affecting me personally but I understood the issues.

Cowan: Do you remember people that you met from those groups?

Kailes: I remember Judy.

Cowan: Was that the first time you met Judy, Judy Heumann?

Kailes: Yes, that’s right. I met Judy and also Neil.

Cowan: Neil Jacobson. 12

Kailes: Neil was at Hofstra so we became good friends.

Cowan: What was Judy like in those days?

Kailes: The same, absolutely the same. She was articulate. She was driven. She was passionate. She was very open to, you know, like you were her best friend no matter what. Just the way she is now. I swear, just like that. Nothing has changed.

Cowan: And nothing was too much to take on, probably, either.

Kailes: I didn’t have daily contact with her but I had enough to know her. There were other people too. There were some other leaders but Judy’s one, I guess, that lasted in my mind because I used to see her all the time and talk to her, work on things together.

Cowan: Can you recall some of the issues you took on in either PUSH or DIA? Some of the battles you fought?

Kailes: I think some of the things were: making classrooms accessible, moving them so that you could use them, and the transportation was the major, major, major issue. [thinking] Now who else was involved? Connie Panzarino. Remember? She later wrote that book The Looking Glass Self. My husband always thinks I know every person with disability in the world, so in Monday’s newspaper, he covered up the name and he said, “Who is this?”

Cowan: This Monday’s paper?

Kailes: This Monday. All he said was “Who is this?” I said, “I have no idea. I don’t know every wheelchair user there is.” And he took his hand off the paper and it was Ron Kovic. I looked at the picture and I said, “I can’t possibly be that old,” because he had a white mustache and no hair. Ron Kovic. He wrote “Born on the Fourth of July” and he was involved with all this at Hofstra, so I knew him.

Cowan: Was he?

Kailes: Yes. He was just back from Vietnam, and he went to Hofstra. So he was part of the wide circle of people. There were other people also.

Cowan: Well, now do you think you were thinking of yourself as a person with a disability? Were you identifying that way?

Kailes: I was beginning to, yes. It felt comfortable and it felt like, “Oh yeah, this is a part of who I really am and we have a lot in common, naturally in common,” so yes. 13

Cowan: In terms of thinking about disability rights or independent living, were either of those terms around?

Kailes: I didn’t conceptualize the “rights” thing until I got to California. I knew things were wrong and I knew there were problems, but I didn’t get the rights-bearing attitude, exactly, until I got to California. There was a basketball team, a wheelchair basketball team, and I would go to those sometimes and hang out with people.

Cowan: What years were these?

Kailes: This was ‘67-’71. The Vietnam thing, that was a major thing and a strike on campus. That was very empowering, too.

Cowan: Were you active in the antiwar movement?

Kailes: Yes.

Cowan: How about the civil rights movements and the women’s movement? Were those campus activities?

Kailes: Actually, now that you mention it, the women’s movement wasn’t, I mean, I must have been there with my thing with the campus about twenty-four hour visitation. I mean I knew that—I think I always had this women’s rights thing in the back of my mind because I was really very angry that I couldn’t be a Boy Scout. I felt it was a real inequality there and it just pissed me off.

But I worked hard to get through college so I wasn’t always attending really well to what was going on in the world. But the antiwar movement I was involved with and we did close down the campus and there was a big to-do. We did go to Washington and that was a lot of involvement there. It was empowering.

Cowan: Did you go as a member of DIA or PUSH or just as an antiwar demonstrator?

Kailes: Both. I think it was more of a PUSH thing then a DIA thing. Well, it was both. The boundaries are vague. But I remember we once went to a President’s Committee on Employment of the Handicapped meeting. All together we went to Washington. Somehow the antiwar thing was combined with that as well. I remember being appalled by the president’s committee. I thought it was paternalistic and placative. It was just so condescending. I went away with such a bad feeling. It was just awful. 14

Cowan: Would you think of that as a turning point or a really significant moment in your life?

Kailes: What?

Cowan: That feeling that you got at that president’s committee meeting.

Kailes: I never did think about that again until you just brought it up. [laughter]

Cowan: It might have been, though.

Kailes: It might have been, you know, just one more thing that enters the consciousness. I think it was too early yet for me to be integrating all of that, but I knew something was wrong.

Cowan: Who would you say were major influences on you in college? Did you have particular teachers, or was it friends like Judy, or was it nobody at all?

Kailes: I think that I would watch Judy and see her. I think she was a role model, and I think I did take in a lot of clues and messages from her behavior, as well as others. I think I took clues from a lot of people, but Judy does stand out. There were a lot of people there pushing for different things and I would just take it all in. It took a lot of time to consolidate, come together. I don’t think it came together until I got to California. That’s when I really started to get the picture really clearly, not until then.

Decision to Attend USC Graduate School in Social Welfare

Cowan: Before we move then to that, there were other things going on in those years. The Rehabilitation Act was passed in 1973. Do you recall any activities about that?

Kailes: No. I didn’t have a lot of awareness of that. By my senior year I had a lot of time on my hands. I liked Hofstra and so I made up that I needed to go to summer school. I really probably didn’t, but I said I need to carry a lighter load during the academic year. Anyway, I went to summer school so that I got to stay there longer and I got ahead of myself in classes.

I had a lot of fun because that was the training camp for the New York Jets and those were interesting summers. By the time my senior year came along, I had all this time on my hands because I had finished 15

more difficult courses during the summer. So I took painting, pottery, jewelry making, all the arts things that I liked. But I also took some graduate courses in rehab counseling because I thought, “Maybe I want to do this.” I took this really excellent course where you went around the New York City area visiting community services and interviewing them and learning about them. I learned a lot about vocational rehabilitation and I learned that that was not anything that I was interested in doing, even though I thought I was. It was much too narrow a scope for my interest in working with people.

I decided I was going to apply for social work, and there was one teacher who, he liked me and he said, “You should do that.” I took a social work course from him. So I applied to a couple of schools. I applied to Adelphi and I applied to NYU(New York University), and I applied to UCLA(University of California at Los Angeles) and USC(University of Southern California). Adelphi wrote me a letter and said that I was too young and not experienced enough to go to graduate school. This teacher went to bat for me and he lost.

Cowan: You mean he tried to stop you from going?

Kailes: No, he tried to say, “What do you mean? She’s old enough to do this. She’s mature enough. What are you talking about?” I applied to the University of Illinois, Urbana-Champaign. I figured that was an interesting place. They sent me a letter and said that before they could even consider my application, they would need a letter from my doctor saying that I had the ability and capacity to go to graduate school. I thought, “Screw you! I’m not going to any place that needs a letter from a doctor! What is wrong with you?” I forgot about that and years later I heard about that place and I heard about the people in charge. I put two and two together and I—I was just appalled by that. I thought, “Talk about discrimination! What is going on?”

Cowan: So while you had all this time on your hands before you—

Kailes: This voc rehab thing was very helpful because I realized that I was not interested in that field. It was too narrow and I wanted something broader. I thought social work would be broad enough for me.

Cowan: And other activism sorts of things going on that senior year? Or advocacy groups?

Kailes: ’69 was the war protest and then ‘69-’70, that was a real activist year. Or was it ‘68-’69? Yes. Then things calmed down a bit. I had to decide which graduate school. I applied to NYU and I went for an interview. By that time I was thinking that there was a problem with the quality of life in the Northeast mostly related to the weather.. 16

One of the hard things in grammar school and high school was that you had to walk on the ice. I would be falling all the time and hitting my head on the ice. It was hard walking to the bus stop in the wind and the snow. In the beginning it never occurred to me that there was any other life. Then I remember going to a dressmaker once. She was hemming my dress and she started telling me about California. It’s not like I never heard of it, but I never heard of what she was talking to me about. That must have stuck in my mind because when I applied to graduate school I was very clear about my need for a better quality of life and the weather. I did think about Florida. I automatically deleted it from my list because of the civil rights issues, because I had family down there. I remember my mother telling me that my uncle and his family wouldn’t let their maid or cleaning lady eat at the same table that they ate at. I thought, “Why?” and they told me. I thought, “I’m not going to a place like that! My God, I want to go forward, not backward.” So I did have some of the civil rights issues, I guess again unconsciously. Living in Rochester, New York where there were riots early on. Saul Alinsky was there early on. So I think I did get some of that, never putting all this together in any way but they were all milestones of news events that were closer to me.

So NYU, okay. I get a call to go to an interview. So I get dressed up, and I had a car. I get all dressed and I get up real early to get there and I go outside and the entire world is iced over, one giant sheet of ice. So I cling to the wall, trying to get to my car, and I get to my car. Walking on that stuff, it was just terrible, awful. I finally get to the car, and I get to the Long Island Railroad. I park the car, but the railroad station is across the street and it’s sheer ice. It’s like six o’clock in the morning and no one is there. I think, “How am I going to get across the street? I can’t even stand up on this ice.” I find this homeless person and I ask him to walk me across the street.

So I finally get to New York City. I get down to Greenwich Village where the interview is. I’m at the corner waiting to cross the street, and this bus comes along and hits the slush puddle. I was head to foot covered in this muddy, crappy slush. I think, “What am I doing here? I don’t want to be here! I hate this place! I can’t stand it!” [laughter] “What is wrong with people who live here?” So I went, I had the interview and I did well. They offered me a scholarship, but I really wanted to get out of there. I wanted something new and different, and I did think I wanted a better quality of life, weather wise. So USC did accept me, sight unseen. No interview, just the paperwork, which is pretty incredible because it turned out to be a more difficult school to get into. I wanted to go to UCLA because I thought they had the better name, but they really didn’t. The other school, USC, had the better name and I got in. 17

I had a friend in college who went out the year before, to California, and she would write me letters about how nice it was there. She had a disability and she went out there for some surgery and to stay with her brother. She said that if I came out we could be roommates. I had another friend I convinced to go to California. I said, “We should go there. You can find a school. I can find a school. It would be fun, nice weather.” And she did. She got in before I did, and she had all kinds of scholarships. When I didn’t hear anything I got kind of nervous I’d have to go to NYU. So I finally did get in and went out there, sight unseen, and shared an apartment with my friend who had left the year before and wrote me letters about how nice California was.

In the meantime, in February of ’71, there were these news reports about this terrible earthquake in L.A. I would see it on TV and I’d go, “Oh. I wonder what that’s about?” [laughs] But I just blocked it out I guess. I just didn’t realize what it was. It was a foreign concept, the ground moving.

Cowan: So you came out in September of ’71?

Kailes: Yes, and just before that I went to Europe with some friends for about six weeks. I had a service drive my car out to California. The car did not arrive on time. It’s the first day and my roommate is sick and she can’t drive me. So I ended up taking a cab to USC the first day.

Cowan: You were there to work for a graduate degree in social work.

Kailes: Social work.

Cowan: Social work. That was a school and a campus that had no disability consciousness at all. Nothing. By that time I did advocate for myself and I would say, “I need to type these essay exams,” and they would go, “What?” I’d say, “So well, where’s the typewriter?” “The typewriter’s in the library.” (This makes me feel very old.) I needed an electric typewriter. They said, “Well, go to the library and take the test.” The problem with these typewriters at the library was that you needed to put a quarter in every ten minutes. So that’s how I did it at graduate school. I’d go to the library and use those typewriters to take those essay tests, for a couple classes that had essay tests, not too many. But there was no access, no elevators, nothing.

Cowan: Were there other students with disabilities?

Kailes: No. There was nothing I could see.

Cowan: Amazing. 18

Kailes: Back to the same old thing again, nothing, nothing.

Cowan: So what did you think?

Kailes: I was trying to get through graduate school. You’ve got to work, an internship, twice a week, and you are in school the other three days a week so I didn’t have much time to think about any of this.

Internship at Rancho Los Amigos Hospital and Graduate Thesis

Cowan: Were you involved in any groups or any outside disability-related activities at this time?

Kailes: In my first year, the school tells me my internship is at Rancho and I’m thinking “A ranch? What the hell do I want to go to a ranch for?” Well, it was Rancho Los Amigos Hospital, which is a rehab center. So there I was in the middle of medical rehab, and it was disability- related. That had a lasting effect on me because I did see many people being forced to go into nursing homes because there weren’t community services available to help them move to an accessible apartment after they acquired a disability. Community services that could have just prevented them from going to nursing homes weren’t in place.

Cowan: Like what little things?

Kailes: Like nobody to help a single person find an accessible apartment instead of returning to an apartment that was on the third floor of a non-elevator building. Or a family that lived in a walk-up where the father was now a wheelchair user. Just appalling kinds of issues that really struck me like, “What is wrong with this?” Working at Rancho was rather an atypical experience in the medical model because it was a team approach to rehab, so there was kind of an equality in the health care team. There wasn’t that hierarchy of doctor, nurse and social worker. It was an even playing field, so I didn’t get all those awful hierarchy medical model messages in that setting. I got those second- hand and third-hand.

Cowan: And what do you mean when you say those medical model messages?

Kailes: Well, what the doctor says goes, the doctor dictates who’s disabled and who’s not, that people with disabilities are sick patients, therefore they can’t do what one could do if they weren’t sick. I didn’t always get that. The doctor wasn’t God. The doctor was just one more 19

member of the rehab team. It was a very atypical experience from what, I learned, most other people got from working in health care.

Cowan: And you got this right away?

Kailes: Right away. I worked there as a student. I worked with families with kids with head injuries and I worked on the amputee fracture service. Then I was hired there after I finished graduate school.

Tape 2, Side A

Cowan: Continue with the influence that Rancho Los Amigo Hospital had on your direction in life.

Kailes: Backing up for a minute, all through college and graduate school I was exploring my disability identity, and so I was writing papers about it and really trying to understand it. It helped a lot. By the time I got to Rancho, I was fairly involved in thinking about disability rights in kind of a change-the-system way. I would see everything that was wrong with the system and I felt helpless. I felt, “This is wrong!” I wanted to work in disability, I knew I did. I didn’t see it as a second-class thing to do. I saw it as a good thing to do. I did my thesis on sexual counseling for people with spinal cord injuries.

Cowan: Your college thesis or your graduate school thesis?

Kailes: Graduate school. I did that because at Rancho I saw that nobody ever talked about sex, and having really benefited from living in the sexual revolution in college, I thought that was a very important part of people’s lives and how come nobody was talking about it? I thought, “What is wrong here?” So I pursued that. The second year of graduate school, I was placed in a child guidance clinic which didn’t have a whole lot to do with physical disability but more mental health kinds of issues with kids.

I did write the thesis on that with a colleague I convinced to do it with me, and I had a very supportive professor who was really interested in it because he had a friend, a colleague I think, who was a quadriplegic. So he was interested in finding out what’s going on too. And I was actually curious myself, having been in college and never totally clear about what’s doable for people with spinal cord injuries and what’s not. I needed to find out. So it was a great thing to do back then because it was on the cutting edge. It was kind of off-putting to many people like, “Why are you doing this?” I liked to do things on the edge and so I enjoyed it. 20

I remember once in college I was taking world history at Hofstra, a very, very, very boring class. It was taught by a Jesuit priest. I never understood what he was talking about. Then we had to do this big paper, so I decided I was going to do the paper on the sex lives of ancient Greeks. [laughs] Don’t ask me why I did that. It just seemed apropos for the time. I knew I was really interested in sex.

Cowan: [laughs] How did your teacher like that paper?

Kailes: I guess I thought it would blow him away. I saved that paper. His comments were very objective and very helpful. He wasn’t blown away. He would say things like, “How did you get to this conclusion? I’m not sure how you got there.” Everything he said made sense. It was very helpful. I think I got an “A” too. I was on this sex track and I pursued it in graduate school, because at Rancho I was just amazed by how it never came up.

Cowan: How did you gather the information for your thesis?

Kailes: I went through what probably back then was the equivalent of an IRB (Institutional Review Board) now and got approval to do the research at Rancho. I got thirty people to interview with spinal cord injuries, did the literature research, and that’s how we did it. It was good. The professor wanted us to publish it afterwards, and it did get published.

Cowan: Good.

Kailes: And then I did pursue it through the seventies. I was really active in sexual counseling in the seventies and then I let it go. I got a job at Rancho when I finished graduate school.

Cowan: While you were still in graduate school, were you active on that campus? Were you politically active?

Kailes: No, I didn’t have time to do anything but get through the program.

Cowan: So you weren’t affiliated with organizations like DIA or—?

Kailes: There was nothing. Those were the times of cultural groupings, the ethnic groupings. We had the Black Student this and the Asian Student this and the Minority this but there were no students with disabilities. There was no access!

Cowan: It was only you.

Kailes: I was the only one. There was no access. There was nothing, but I was at Rancho so I was surrounded by a lot of issues, major issues. I got 21

my fill at Rancho. I didn’t have to do anything at the campus. I was intrigued by the issues. I saw how disability was seen, what things weren’t talked about, how people got forced and warehoused into institutions because there were no services.

Cowan: So you were really becoming focused and aware.

Kailes: Yes.

Cowan: But through your work at Rancho, not through your work at USC so much.

Kailes: Right. Well, the first-year placement was at Rancho through USC.

Cowan: Right. But, I mean, it wasn’t the campus or a teacher that was so influential for you. It was this job.

Kailes: Yes. I thought the education—the classroom experience—was mediocre.

Cowan: You were taking psychology classes and counseling classes, that kind of class work?

Kailes: Well, there was a curriculum, you know, social welfare, history. But the things that really turned me on and the good professor was in community organizing and political activity. It was called COPA: Community Organizing and Public Administration—

Cowan: Do you remember the teacher?

Kailes: Oh yes, Sam Taylor. [phone rings] He was very animated, he was very clear, he was very understandable, and he was very motivating. I liked him. I was so influenced by him that I switched professors so I could be in his research class. He was the one that helped us through the thesis and motivated us to get it published. I always stayed in contact with him afterwards. Whenever I would run into something that I needed help with, something that I thought he would know about, I would call him and go see him. He spent time with us, getting this article in shape. He spent time with me when I had questions with WCIL and what to do. I can’t even remember what I would go there with, but he was always there, always available, always had time. He was very exceptional. You could understand what he was saying, which was not true with many of the other instructors in the program.

Cowan: He sounds like a wonderful teacher and a major influence for you then. Did you give any consideration to organizing or becoming an organizer? 22

Kailes: No. I should have, I mean I just got there anyway but—

Cowan: You already were an organizer.

Kailes: There was a value system in the graduate school that valued clinical work over everything else, including community organizing and public administration. Strong, strong values about clinical practice that I guess I must have bought into for a while.

Cowan: So that’s the direction you went.

Kailes: Yes.

Accessibility Changes at USC

Cowan: How about your experiences at USC?

Kailes: Later—and I don’t know how this happened—when they finally decided they had to do something about students with disabilities, I became a part of some advisory group on that campus that was helping them to make change.

Cowan: I wonder what motivated that? Was it because laws had been passed or—?

Kailes: Yes, I think so, laws, complaints. They were so far behind in regards to 504, and it was a private school.

Cowan: Right. So they didn’t have to move along as quickly as—

Kailes: They got plenty of public moneys, so I’m sure they knew the writing was on the wall and that they had to make some access-related improvements.

Cowan: So you went on—

Kailes: Let me just say something. This is really important.

Cowan: Yes, please.

Kailes: I had a cathartic experience there a couple weeks ago. I was asked to do a commencement talk at the school of OT, occupational therapy, at USC. I hadn’t been back there for many, many years. I went the day before because there was going to be a horrendous traffic problem that morning. So unless you were there early you’d never get in, so I stayed 23

with a friend, the dean, the night before. I had time to explore the campus on my scooter, and I was just amazed. It was like I had died and come back thirty years later. All the things that I’d worked for were in place. There were ramps. There were curb cuts. I even went by the old school of social work, and I really got pissed because the railing I had fought for was gone. “What happened to the railing?” Well, they didn’t need a railing. There was a ramp. I thought, “This is really impressive.” It’s like “your work made visible.”

Cowan: Was this USC or Hofstra?

Kailes: This is USC. I’ve gone back to Hofstra too, and that place is gorgeous and accessible like you wouldn’t believe.

Cowan: Well, when you say the things you worked for and the railing that you asked for, tell me about that, because you said you didn’t really engage in activities at USC.

Kailes: Oh well, one railing. One railing so I could get up the steps into the school.

Cowan: It wasn’t part of a demonstration or a plan to make the campus more accessible?

Kailes: No, I didn’t have time. I just had to get through school at that point, you know, “Put a railing here so I can get up the steps!”

Cowan: And you were a group of one, anyway.

Kailes: Yes, exactly. [And this was what I did work on from the mid-1970s and on.—jk]

Hired at Rancho Los Amigos Hospital, 1973; Sexual Attitude Reassessment

Cowan: So you were hired then at Rancho Los Amigo. You were a medical social worker there in 1973.

Kailes: Yes. I never got along very well with the director of social work. We didn’t always see eye-to-eye on things.

Cowan: You were already very familiar with the programs they offered, though.

Kailes: Yes, and I had heard that some of the people I had worked with went to bat for me in terms of helping me get hired there, that there was 24

some resistance. There might have been some disability discrimination, I’m sure, but some people whom I had worked with at Rancho had good influence, so I did get hired. I enjoyed it. I learned a lot, but I got into a lot of trouble. I would never do things by the book. I remember I was just infuriated with the social work director because I was running a group with a psychologist, and she said, “I just don’t do that.” There were these silly profession-turf-jealousy rules. And I was pursuing the sexuality counseling, and that was not very comfortable or acceptable for a lot of people. Addressing sexuality in rehab was gaining momentum and people were beginning to talk about how important sexuality was, and there were outside things happening in San Francisco and Minnesota, and we offered to bring those programs in to train rehab people on how important it was to talk about sexuality. I think that made the social work director uncomfortable too, that I was involved heavily in this movement.

Cowan: Do you recall the names of the programs going on in San Francisco and Minneapolis?

Kailes: Well, UCSF had a big program and Ted Cole in Minnesota. These were the beginning of what we would affectionately refer to as fuckaramas. They were called SARs—Sexual Attitude Reassessment. I was involved with this and involved with sexual counseling. I was more off the edge again, and this was not really endorsed by the social work director.

Cowan: What did they want you to be doing?

Kailes: Just following the rules and doing the job, which meant not going outside the lines. This is who I was though, and this is amusing. I went to the social work director early on and said, “You know, I don’t really care for my supervisor. I’d like “so and so” as a supervisor because I think I could learn more from her.” [laughter] She looks at me like, “What?” I go, “Well, I’m here to learn, aren’t I?” Anyway, it ended up that I did get that supervisor. I don’t remember how but it all worked out. It worked out well. I mean, naïve, very naïve, but heck, don’t ask, don’t get.

Cowan: That’s true. On your resume it says you were doing some psychosocial aspects of disability training for USC’s medical students. Were medical students coming to the hospital for training?

Kailes: Yes, of course. Rancho was a teaching hospital.

Cowan: Oh. Affiliated with USC? 25

Kailes: Yes, a huge rehab hospital. So there were interns and residents there all the time, but that wasn’t how that happened. That was later. I was at Rancho for three years and I was getting a little antsy because I wasn’t getting along well with the director. I was getting concerned about probably never getting promoted and feeling like I wanted more clinical experience in terms of psychotherapy, and wanting to try mental health. So I competed for another civil service slot and went to Olive View (Olive View Community Mental Health Center) in mental health. I worked in an inpatient psych unit in detox, alcohol and drug detox, and did some outpatient work.

Cowan: Before we totally leave Rancho, were you working with outpatients there? Where did your clients come from?

Kailes: I worked in a neurology service, inpatient. I did see a few people ongoing who would come back to see me once a week, just ongoing.

Cowan: Counseling basis, yes.

Kailes: Yes. It was neurology. Everything from people with MS [multiple sclerosis], or muscular dystrophy or Guillain-Barre, and everything that wasn’t a stroke or head injury was part of that particular neurology service.

Lessons Learned from Rancho Los Amigos, CIL Berkeley and Olive View Community Health Center

Cowan: What would you say was the biggest thing that you got from Rancho before you moved on?

Kailes: I learned a tremendous amount about health services. I learned a tremendous amount about what was missing in the community for people with significant disabilities. I learned a lot about who does what professionally. I learned a lot about how hospitals work, how drug companies work, how rehab works. I learned a lot about different disabilities. I learned a lot about medical education, health education. It was a great education. You could avail yourself with all kinds of grand rounds and learning, seminars and workshops. It was a good well-rounded kind of disability clinical education.

Cowan: Did it change your way of thinking at all, or did it help to involve the kinds of things you were doing?

Kailes: Yes, totally. 26

Cowan: In what ways did it do that?

Kailes: Totally it did. When I was in the second year of graduate school working in this child guidance clinic I asked for time off. Neil Jacobson came up to visit me. He was thinking about going to school out here as well. He was going to drive up to Berkeley, and I wanted to go with him. I asked for permission to go and they said no, so I just made up something like my uncle died and I went anyway. I went with him up to Berkeley, with some other people, in 1970 or ’71, and CIL [Center for Independent Living] was in an apartment then, right?

Cowan: Yes.

Kailes: That had a real impact on me. It blew me away. I thought, “Oh my God, this is perfect.” It’s like coming home, I mean, you could feel it, you could touch it, you could smell it, you could see it. It was like a whole different approach. It was like, “That’s the answer. This is what’s missing.”

Cowan: An epiphany.

Kailes: Yes, it was like “Oh, this is it!” I knew that it was something really different and really, really unique. Then I don’t know what happened. I guess I just tucked it away.

Cowan: Tucked it away and went back to—

Kailes: Doing what I was doing.

Cowan: To Rancho or Olive View?

Kailes: I went to work at Olive View in ’76 or ’77. That was another real learning experience because I realized that people with emotional disabilities and mental disabilities actually in many ways seemed to have a more significant disability than people with physical disabilities. It was hard to understand because I just never thought in those terms before, that you could have a regular functioning body with no functional limitations and yet have a greater impact in terms of life functioning. So that was an incredible thing. Other than that I liked doing outpatient work and seeing people in counseling, but I missed the disability work, the other work. Primarily the job was inpatient, and I worked with a team of people that were so burned out.

I had always been a militant non-smoker, and that got worse and worse. The older I got, the more militant and unforgiving and intolerant of any smoking. In detox they let people smoke in the hospital. I was not happy there. The staff would sit in the nursing 27

station reading the newspaper half the day, and I was scared I was going to catch their, what I labeled, terminal burnout. On the other hand the outpatient experience was really good, a great group of people. I really enjoyed them and made some good friends there too. But I wasn’t happy,

Cowan: I think I didn’t get that before. You went to Berkeley in ’71 and saw the Center for Independent Living. Then you came back and worked at Rancho and then Olive View.

Kailes: So Berkeley came before I worked at Rancho.

Cowan: It sounds like it. You were internally putting two and two together here.

Kailes: So I did the mental health thing and I wasn’t happy there.

Beginnings of Westside Center for Independent Living, Los Angeles, 1976

Kailes: During that time I had a group of friends, including my roommate, who went to USC’s School of Occupational Therapy. She had some friends with disabilities and they had some friends. One day at Thanksgiving they called and said, “Why don’t you come over here. We want to talk about doing something here like they did in Berkeley.” So I went and I brought a friend with me. It was kind of rude to just leave Thanksgiving but hey, it sounded important. We went over there, and from then on we met for about six months in Sherman Clarke’s den. He was a man with a significant disability— arthritis, wheelchair user, who lived there with his wife, Sue Clarke, who was another OT [occupational therapist]. This was the OT connection down there.

Cowan: Yes.

Kailes: So we met, a group of us with disabilities, for a while.

Cowan: Any other names you want to mention?

Kailes: Sandy Burnett, Sue Clarke, Nancy Becker Kennedy. She was in and out for a while. Doug Martin.

Cowan: You were discussing CIL? 28

Kailes: What we could do. Then everything converged because that was when Ed Roberts became director of the California State Department of Rehabilitation. That started the first CILs in California. He chose to spend money on CIL’s even though the bureaucrats said you can’t do that. So it all came together then. I guess I was still at Rancho when that happened. We got funding, got the grant written. Sherman Clarke was not working. He was at home, so he could do a lot of the grant writing. And we got it funded. It was funded in ‘76.

Cowan: What was funded was the Westside [Center for Independent Living]—

Kailes: We wrote this grant. I have this grant somewhere which I recently reread. It was like we were going to do everything to everybody, anywhere and everywhere. It was the most unrealistic thing that I have ever seen. It sounded fine to us at the time but to read it now. It would never pass now. It would be laughed at now. But it got funded.

Cowan: That’s great. Funded by whom? By the state again or—?

Kailes: It was innovation and expansion money, it was federal money, it was HEW (Department of Health, Education, and Welfare, U.S.). It would flow through the state of California. That was the original money, I think. All I remember is that’s how we got it started.

Cowan: Where did you start it?

Kailes: In Sherman Clarke’s living room. We got the money and then we had to look for space. I remember looking for space on my own and finding a storefront that I thought was a nice location.

Cowan: Where was it?

Kailes: It was Barrington and National.

Cowan: Where was it?

Kailes: It was in L.A., in West Los Angeles, Barrington and National.

Tape 2, Side B

Cowan: So you found this storefront.

Kailes: Yes, in West L.A., a little strip shopping center with four or five stores. I went in, not realizing what I looked like. I had jeans and a sweatshirt on—I never looked my age—so I probably looked about eighteen or nineteen. I said that I was interested in renting the storefront. [laughs] And he said, “Oh yeah, for what?” I told him and 29

he said “Oh.” Turns out he was not very happy about this, and he thought, “I don’t want those disabled people around here.” But for some reason he did agree, and we did rent the place. It was a nice location, very nice. I think he owned the property and I think he learned a lot from us being there over the years. Eventually we rented two storefronts and not one. Years later when we left he said to me, “I didn’t want you here. I thought this was going to be a disaster and for some reason I did not say no, but I was really worried. But you changed the attitudes of many people around here.”

Cowan: Do you remember his name?

Kailes: Foster, Mr. Foster.

Cowan: So you rented this storefront but you were still working at Rancho or Olive View?

Kailes: I believe I was still working at Rancho and probably took the day off and happened to be in the neighborhood. It intrigued me to be able to look for property. I always liked looking at property.

Cowan: So you got Westside [Center for Independent Living] off the ground.

Kailes: Well, not exactly. We finally get the money, we finally get the grant, we finally get the space. We are going to open it up in a day or two. Bob and I were on our way to Sherman’s house, and I say, “Well, let’s go by this property,” because we had to get a volunteer to widen the doorways because it wasn’t accessible. We went by and I see all this crap in the parking lot, and I see these burn marks around the door, and the whole thing had burnt down. It was gone, just that one store!

Cowan: Oh, you’re kidding!

Kailes: It was burnt down!

Cowan: The one you were going to go into?

Kailes: Yes, yes, yes, yes. It was right before we were going to move in, burnt down. They determined it was some kind of electrical fire.

Cowan: So what did you do? Find another place?

Kailes: I was working. I had a job so they had to look for other places. Now, Bob, my husband, who was planning on changing jobs around that time anyway, decided to take time off and help out.

Cowan: You were married? 30

Kailes: Yes, Bob.

Cowan: You didn’t mention that part.

Kailes: Well, we skipped over that part. We have to go back. Were we married or living together? We might have just been living together, but I think we were married by then. Anyway, Bob got involved. The first executive director was Sherman Clarke, but before that fire he got very sick. He went into the hospital, and he went into intensive care, and he passed away.

Cowan: A fire and the director dies—an inauspicious start.

Kailes: I said, “We’ve got to do something here” and so my husband did help, along with Doug Martin. I don’t know what Doug was doing. I guess he wasn’t working, and so Doug became the director of WCIL then. So they went out looking for space and they got UCP, United Cerebral Palsy, who had a kid’s program, to agree to rent a space every day after they left at three o’clock in the afternoon.

Cowan: You could go in then.

Kailes: I think they did that for about six months. We had to hire people, I mean, it was horrendous. It was this place on Venice Boulevard, and I guess that’s where they operated it for about six months.

Cowan: Oh. At UCP?

Kailes: Yes, from three o’clock on, until they reconstructed the storefront. So then what happened was another storefront became available next to the one that had burned. They let us move in there temporarily until they finished, but that was months later. It took a while.

Cowan: So Mr. Foster let you back in, in a new place until they finished the other.

Kailes: He never went back on his word. Yes, the fire wasn’t our fault.

Cowan: No. So you were there from the very earliest part, not just from when you got hired there.

Kailes: Yes, day one. We met for months to get the center started.

31

Goals and Vision of WCIL

Cowan: What were the goals? What kinds of things did you have as goals or what was the vision of Westside?

Kailes: The vision was to offer peer support services just like CIL was doing and to begin to work on the community access issues, problems, and barriers. In my mind it was very clear—none of those Rancho people were going to have to go into a nursing home ever again. I was very clear about the whole thing. I knew that was what it was also about. Plus peer connections and peer support.

Cowan: It was about independent living.

Kailes: Right. And transportation. We were going to offer transportation. And finding housing and finding attendants, you know, Information and Referral.

Cowan: Why do you look back now and say, “We’d never get by with that today?”

Kailes: The grant proposal was pretty unsophisticated.

Cowan: But those were the things that you said in the grant proposal you wanted to do.

Kailes: Yes, but we said them in very global ways. We wanted to help everybody do everything to make everything better, no objectives or timelines like we have to do now. We only received $80,000, and we had to match it by the end of the first year with another $10,000. We took fundraising very seriously because we didn’t want to close after the first year. It’s hard to raise $10,000 from scratch but we did, and I met some very influential people. I was still at Rancho, and the social work staff would go to the psychiatrist once every couple of months for some training. He was a quadriplegic, a quadriplegic who was a psychiatrist. One day he says in a meeting with all these social workers, “Does anyone know anything about independent living or CIL?” I said, “I know a little bit.” So he and I became friends.

Cowan: And what was his name?

Kailes: His name was Arnold Bisser. He ran a community mental health training center in West L.A. We became friends and he introduced me to a woman who was interested in getting involved, who happened to be a post-polio quadriplegic and who turned out to be wealthy. She volunteered to help. I had all the Information and Referral stuff in my living room, all unorganized, so I took it to her and said, “Organize 32

this. You want something to do? Organize this.” I got the idea that there was something different about her. When I rang the door—first of all I had to drive up into the Bel Air hills of L.A. and a maid answered the door, and another maid wanted to know what I wanted to drink, and a third maid wanted to know something else. I thought, “Oooh, okay.” [laughs]

Cowan: Who was this person?

Kailes: Her name was Helen Lavin, and she was actually related to Dear Abby. She was very intrigued by what we were doing and wanted to help. Well, she got all her friends to help. She had a whole group, these people with polio who had all been hospitalized together in the fifties in Santa Monica. They all knew each other. So she got all of them and from these boxes of stuff I left in her living room, she had a whole group of people with disabilities, working on this Information and Referral. She helped us raise money too. She was in the kind of circles that introduced us to people that gave us the ability to really do very well with fundraising. And because we took it seriously from the beginning, we were always very much ahead of all the other centers, when it came to fundraising. I remember that in the first couple of weeks we would bring our address books and write letters to our uncles, “Dear Uncle Max, I’m involved in this new project and we need to raise this money to keep going.” We did this from day one. We took it very seriously. So we did raise money. We must have raised three or four thousand, which was a lot then. But then Helen helped us match the rest. We were off and running after that. But I was bored being on the board of directors. I was really bored.

Cowan: So you were still at Olive View perhaps or Rancho?

Kailes: From Rancho to Olive View. I was still on the board and I was very bored about that. I’m a doer. I don’t like to talk about it. I want to do it. I told Helen I wasn’t happy, and I was bored and she said, “Well, what do you want to do?” I told her I wanted to start a peer-counseling program there, that I had those skills and I could do that. She said, “Write a grant and I know where to submit it.” [laughs] Some family foundation of hers, little did I know, and that got funded. So that’s how I left Olive View and went to work at WCIL. I wanted to be there so badly that I could taste it.

Peer Counseling and Services at WCIL

Cowan: So you became the services director or whatever, peer counseling— 33

Kailes: Peer counselor person, services person, yes.

Cowan: So what all were your duties then?

Kailes: The first grant I had to train people to be peer counselors. I had to put together a training program and pair people up, and continue to give them what they needed to be helpful to other people with disabilities.

Cowan: What do you mean when you say peer counseling?

Kailes: People with disabilities helping other people with disabilities to problem solve, to maintain or improve their ability to live independently, to get what they need to survive, to be advocates, to talk through problems, somebody who knew how to listen. And somebody who came from a disability experience and had that under their belt, so that part didn’t have to be explained. You knew it, you were from that culture, you had been there. You didn’t have to have the same disability but you had to have the experience.

Cowan: I see. So a peer counselor would help not only with the practical day- to-day living but also with emotional or family problems.

Kailes: Yes, the whole gamut.

Cowan: Did you have to train peer counselors?

Kailes: Yes. I developed this whole training program and modeled it a little bit after the Santa Monica peer-counseling program, which was for seniors. And I also modeled it after what I’d learned from CIL in Berkeley, a combination of those two models. Then I just kept adding things to the training as I learned more. We started to grow by adding other programs and services.

Cowan: Grow?

Kailes: Employment

Cowan: And housing?

Kailes: And the I and R part of the information referral. Things just started to grow.

Cowan: How did people know you were there?

Kailes: Word of mouth, newsletters, you know, what every beginning nonprofit does. Radio. The word spreads. 34

Cowan: So you had a clientele right away.

Kailes: Yes.

Cowan: And you served the West L.A. geographical area?

Kailes: Right.

Cowan: What kinds of people would come in?

Kailes: Well, I wasn’t there in the very beginning but all kinds of people. A diverse group of people with disabilities who needed basic kinds of things “I can’t get on the bus, I can’t find an attendant, I need to find accessible housing.” Pretty simple problems that weren’t so simple back then.

Cowan: Was there diversity in terms of racial and ethnic groups and socioeconomic status? Was it pretty broad across the board?

Kailes: Yes, pretty diverse. Wealthy people, poor people, black, Asian. A lot of old people. WCIL, I think, was one of the centers where over half of the people they served were over sixty. None of the other centers really had that. There was something about that area and the needs.

Cowan: The Berkeley CIL was so connected to the campus in Berkeley, but you didn’t draw so much of a student population?

Kailes: No, not really. Not like Berkeley.

Cowan: And when you got there and working on site?

Kailes: When I first came to work there on site, as a job, I was there for a week and I thought, “If I never set foot in this place again, what I’ve seen in this one week would have made it all worthwhile.” In one week, if I never saw any of this again, it would have all been worth it.

Cowan: You mean all the work to get it going?

Kailes: Yes. You could see people benefiting. You could see what was going on. You could see it. It was very tangible if you looked for it and listened.

Cowan: What was going on outside of Westside now? Were you still thinking of yourself as an activist, or were there other movements going on that you watched or cared about? 35

Kailes: I knew there was stuff going on in the disability movement, but I was so wound up in services that I wasn’t really concentrating a lot on the bigger issues. I really had tunnel vision then because I was so focused on building services. Plus I still had that leftover social work focus on what you were supposed to do. So I had a private practice on the side, seeing people with disabilities. I was plenty busy.

So what happened was, Doug Martin left, the director. I think he thought it was too much work, too hard and given his health issues and other issues. Neil Jacobson became the director for a year, and then he left. Then the job was open again, and the person who was supposed to become the director, who wanted the job, her name was Jane Small. I wasn’t really thrilled about that, and I thought that if she became the director I didn’t know if I could tolerate working there. She had a very strong personality. A good advocate but terrible people skills and very difficult to work with. So I had to then decide whether I was going to let that happen or whether I was going to bite the bullet and think about applying to be the director, which I was not really interested in doing. But I was not interested in leaving either. I put too much into the place to just leave. So I went to see a friend who was a therapist for several weeks to figure out what to do. It’s funny, I just saw him the other day.

Cowan: What is his name?

Kailes: His name is Dale Garrell. He ran California Children’s Services and had a counseling practice. Anyway, we talked for a long time and I decided to apply for the job.

Cowan: Of director.

Kailes: “Bite the bullet and apply for the job.” So I got the job, in 1981, and I competed against Jane. She was not happy! She threatened lawsuits and it was not pretty.

Cowan: On what basis could she threaten lawsuit?

Kailes: She said, “The process wasn’t fair” or “The references they checked weren’t right.” I don’t remember exactly, but I think someone on the interview committee leaked some negative information about her. She made things difficult there for a while.

36

Bringing Growth and Changes as Director of WCIL, 1981-1989

Kailes: Anyway, there I was, director. I didn’t know anything. I had no clue how to do the job but I was director.

Cowan: Did you have some ideas?

Kailes: Oh, plenty of ideas.

Cowan: A new direction or new goals?

Kailes: Plenty of ideas. I never was hard up for ideas.

Cowan: So what did you have in mind?

Kailes: I had in mind surviving first. [laughter] Figuring out how to do the job.

Cowan: How did you do that?

Kailes: I would go to the meetings of the executive directors and ask every one of them a million questions so I could figure out what the heck I was doing. Then I would take courses all the time to figure out what I was supposed to be doing. I just made my own education up to figure out what to do.

Cowan: When you say other directors, other directors of other CILs, you mean?

Kailes: Yes.

Cowan: And where would you take classes?

Kailes: Well, the Center for Nonprofit Management offered classes. Arnold Bisser, the person I mentioned before, he had a whole mental health center that offered classes on different management issues. So I just took many classes. I became the technical assistance person for the state coalition. We called it the California Coalition of Independent Living Centers. So, at that time, whatever I didn’t know I figured other people didn’t know, too. I would bring in trainers every meeting.

Cowan: So trainers came from other centers.

Kailes: No.

Cowan: Well, what’s an example? Where did you get them from? 37

Kailes: If we needed a training in personnel management, I’d find someone to do that, maybe from the University of San Francisco. If we needed training on other ways to do peer counseling or—. People from all over. We had a little budget.

Cowan: That’s a brilliant idea.

Kailes: We got some money from the RCEP Region 9, because they were suppose to help centers train, too. So I would do it that way. And I had some good organizational skills so I knew the fundraising had to be organized and there had to be personnel files, there had to be personnel evaluations, and there had to be a salary plan. I knew what had to be done. There had to be a better infrastructure. Nothing was in place and I could do all that clean up kind of work.

Cowan: That’s a lot to do.

Kailes: It was and I learned a lot.

Cowan: Did you intend to expand the services at the same time?

Kailes: Oh yes. I always thought bigger was better, which was something I learned later is not the case.

Services, Philosophy of Independent Living, and the Importance of Advocacy

Cowan: What kinds of expanded services did you innovate?

Kailes: There was money in the California Department of Aging for Linkages programs. Those were programs that would offer independent living services for people who were threatened with a nursing home placement unless they got good service coordination. That to me was a great chance to influence the Department of Aging’s thinking about services, because by that time I had been involved in state long-term care programs and had been involved in working with some of those committees.

Cowan: How did you get involved with them?

Kailes: Through the California Coalition of Independent Living centers. They must have said who’s interested, and I was always interested.

Cowan: And by linkages you mean that the services they needed were linked? 38

Kailes: It was the name of a program. There was a MSSP program—Multi Senior Services Program. But then the Linkages program was supposed to be another part of a continuum of services that worked with people who were threatened with nursing home placements unless they got an array of community services.

Cowan: Is this a federal program, state, county, city?

Kailes: It was state money. We were the only ILC that applied for this money. Every other funded project was a senior project. My idea was that we were going to turn around the thinking in the Department of Aging in regard to the way they thought about disability within senior services. It was fun while it lasted. [laughter]

Cowan: What made it stop?

Kailes: It continued long after I left, and then the state decimated the program, and they cut the budget. When I left, some of the philosophy that I had worked so hard to infuse in that program and the state weakened, as nobody else took that on.

Cowan: What philosophy?

Kailes: Independent living philosophy. The way you view disability as not a problem and not a negative thing, and just something else to deal with. And if you had the right to services and the right attitudes, people could go on and do what they wanted to do. Not provide services in a paternalistic, placative, childlike way, the way that I saw a lot of geriatric services being delivered.

Cowan: Consumer-directed, in a way.

Kailes: Infusing the whole independent living philosophy into another service system. I thought that was a real challenge. It seemed to be working while I was there but when I left no one continued the battle. It was always a battle. One thing that I learned about being director was that I needed to put a lot more time into staff training and the IL philosophy and values than I did. People didn’t get it. A few people got it intuitively, other people really needed education to get it, and some people never got it. There were people in the Linkages staff who never really got the philosophy. You can recite it, but it doesn’t mean you are practicing it.

Tape 3, Side A

Kailes: In terms of programs, we had a computer training program that was different, that trained people to become mainframe programmers 39

within the computer industry. The only other program was in Berkeley. This program gave us introductions into corporate America, which was very helpful. I always wanted to see us do more innovative kinds of things. I was always restless about that.

Cowan: What kinds of innovative things?

Kailes: I wasn’t sure exactly, but one of the turning points for me was that I realized, after coming out of a decade of providing individual services for people and groups, that that wasn’t enough. I think when I became director and I let go of providing direct service, I realized how important advocacy was, and that nothing was ever going to change person by person, that we had to affect the big picture or we’re going to get nowhere fast. Gradually I became more and more interested in the advocacy and less interested in the services, and I think people could tell. I really wanted to put emphasis and more resources into the bigger picture. That was a battle because a lot of the people there were service delivery people and they weren’t interested in the big picture. They didn’t want to be part of actions and demonstrations and work in Sacramento. They just wanted to provide services. So I really felt a tension about that.

Work on the National and State Levels, NCIL

Cowan: Did you have any allies?

Kailes: A few, not enough. The board early on in the eighties told me to get involved in the national issues, and I didn’t really know what that meant. But Ray Zanella at the San Diego center kept telling me about this new organization called NCIL [National Council on Independent Living] and that I needed to get involved in that. He kept pushing me and pushing me to do it. So I did. The first time he met me he wanted to hire me and I thought, “Who is this guy?” He and I always had this love-hate relationship. “Well, okay.” So I did. I got involved. The board said, “Get involved,” and I got involved. It was a real education about the big issues and the Rehab Act, and about how Washington worked and how policy was made. I learned a lot.

Cowan: What were the big issues?

Kailes: Well, certainly changing the Rehab Act, changing the way independent living was dealt with in Title VII, changing some of the ways people funded by Title I got services, the whole appeals process, the waiting periods, and funding for independent living. 40

Cowan: These were issues the NCIL was working on?

Kailes: Yes. Healthcare wasn’t a major issue, until the nineties. Housing was a major issue. I got really involved in NCIL for a long time. We worked on a lot of legislation, Air Carriers Access Act, Fair Housing Act Amendment and the reauthorization of the Rehab Act which also helped to increase Independent Living funding.

Cowan: Were you an officer, I mean, did you have a position there?

Kailes: I was every office on the board. I was the acting president when Marca Bristo was pregnant, for a while. I must have been involved for about five or six years. I learned a lot and it took a lot of time, a lot of effort. I had some good people at the center, but it was hard to balance both. It was hard to do both and do them well. But I had some good people at the center. The board wanted more of a national presence and so that’s what I did.

Cowan: So Westside got a national presence through your work with NCIL.

Kailes: Yes. Plus I got involved in all their training activities, IRU (Independent Living Research Utilization). They had all kinds of federal funding for training for centers. I got involved with them first as a trainee and later as a trainer, and took advantage of everything they offered for directors.

Cowan: Did you ever work with politicians?

Kailes: Oh yes, constantly.

Cowan: In California or national?

Kailes: Yes, both, because I was very involved with the California Coalition of Independent Living Centers too, and held offices there. I always did their training programs because that’s how I got my training, kind of like those bus trips, you know. [laughter] Oh yes, politicians. I had files on them. I had contact sheets on them. We invited them to the center, and they come to know who we were. I felt that those were very important relationships. I would be where they were to get face time and name recognition and so I could get the attention when we needed it.

Cowan: Do you have an example of some legislation that you were promoting and using your contacts to get passed? 41

Kailes: Well, during that time independent living became part of the state budget, became a line item in the budget. In the original ten centers, that was federal money passed down to California.

Cowan: There were originally ten?

Kailes: There were originally ten centers funded.

Cowan: Throughout California?

Kailes: Yes.

Cowan: I see, that were federally funded?

Kailes: Yes, through that first federal innovation and expansion money.

Cowan: Okay. So when that ran out?

Kailes: The whole push was to get the California budget to absorb and fund the centers. That was the push by the California Coalition of Independent Living Centers. And then there was a push to increase the money.

Cowan: It became a line item budget?

Kailes: Yes.

Cowan: And who was governor when that happened, if you remember?

Kailes: Was it Governor Jerry Brown? When did Brown leave? Brown was during Roberts’ era. Then we increased the budget, and then we worked on a program, we called it Seymour money. Senator John Seymour sponsored a bill where we were able to match money that the centers raised dollar for dollar, as incentive moneys to raise money from the community. It was pretty innovative at the time. I don’t know where that is now.

I remember once California State Assemblyman Tom Hayden was sponsoring a bill, fingerprinting bill for attendants. We thought that was very detrimental because at the time we couldn’t even find enough attendants as it was. So I had a relationship with him, and I went over there, and I said, “Tom, where did you get this idea from? You never talked to us. We don’t want this. Don’t do this. It’s not good.” And he wiped it out. That kind of thing became a precedent. We were always inviting the mayor or the city council to visit. It was very important because that’s how we got local city money. That’s how we got county money. I remember I got mental health money that way, playing the 42

political game. Very important, I mean, for survival. People didn’t realize how important that is in so many ways.

Cowan: It sounds like it, and it sounds like you made everyone on your board do it.

Kailes: Well, not everybody would do it, but I would do it. I made the staff who I could make do it, do it. We had receptions for the politicians in Sacramento at the coalition every year. We tried to always get them to visit the center, have lunch, would take a picture, whatever it took. Congratulate them on their reelection. Tell them we were here for them, and they could use us for assistance with their constituents.

Cowan: When I was looking at other people’s resumes, people like Diane Coleman and Carol Gill were on your board. So you had national figures on your board.

Kailes: Yes. We were not all national figures. We were just people. Carol was on the board. Carol helped me initially to think through the peer- counseling program. I even think I had her as a trainer a few times.

And Diane was on the board. I like Diane a lot, and I said to her, “Diane, I don’t want to do this job forever. I want to move on, and I’ve been looking around for who I think could do this job, and I think that you could do this job really well. Would you be interested?” She said, “No way! No way do I want to do that job!” And I said, “Oh well. You were one of the people I picked out. I’m really disappointed.” But yes, she was on the board. She was very, very savvy and very helpful.

Battles and Complex Issues at WCIL

Cowan: Did things change when administrations changed, when Brown and the Democrats went out and the Republicans came in? Was it harder?

Kailes: It was harder. Life at the center was harder too. Those simple problems that people came in with disappeared. People came in with much more complex problems. It wasn’t just needing accessible housing anymore. People came in with much more complex issues. They needed housing, they had employment discrimination going on, they couldn’t get health benefits. Everything got much more complex. The simple things people learned how to do by themselves because there were now more community supports in place. So we felt that the whole picture at the center changed in a decade from simple, easy kinds of 43

things in the seventies to harder, much more complex and in need of coordination of multiple services for people.

Cowan: How did the center change to meet those more complex needs?

Kailes: Well, sometimes it did and sometimes it didn’t. People needed to be more involved in helping people connect with other community resources and not just pass the buck, which was always a problem. Not compartmentalize things but look at the whole person and staying with the whole picture, not just say, “I’m I and R, and she’s housing, and over there they can get some help with their low vision from the other organization.” It had to help people stay connected and help them with coordination of pretty complex kinds of issues.

Cowan: Was staff burnout a problem there too?

Kailes: Yes, staff burnout was a big problem. I hated losing good people. I could never get used to that. I put a lot into hiring people. It took a lot of time to do that. I got tired of that after a while. It took a lot out of you. I was very committed to offering competitive salaries. That was a major battle with the board but we did do that. We did get salaries significantly raised. I was proud of that. But after I left that fell back too. I didn’t want to be offering second-class services by offering low salaries. We needed to be as competitive as whoever else was in the community, and people didn’t understand that. They thought center people should work for low salaries, and I didn’t believe that. I thought that was very second-class and this wasn’t about being second class, it was about first class, and having a good location and the roof not falling in and looking the part. It was hard.

Cowan: It sounds like you were getting a little burned out.

Kailes: I was. I had to master a lot of new skills but it began to get repetitive for me. If I had to do it again I would have concentrated much more on advocacy earlier on and set things up so they weren’t quite as one-to- one oriented, much more advocacy oriented. I did those changes incrementally where I could, but it was never enough for me. It was never fast enough, quick enough. There were only a few people really focusing on big picture items, and I wanted that to be more because I knew how important that was. Now, looking back, I would have relied much more heavily on outside consultants to bring in the missing expertise. I never realized I could do that. It never occurred to me to do that.

Cowan: You thought you had to think of it all yourself. 44

Kailes: Or hire the right people. I didn’t ever think I had to think of it all myself. It seemed like consultants were so expensive when actually they were probably cheaper because you didn’t have to pay all the benefits. And if you didn’t like them you could just let them go in a minute. So I never thought we did enough of that. The board was very split about, even though they said, “You’re not out there enough. You’re not involved nationally enough,” over the years there was a split on the board about whether I should be an in-house director or an out-house director. I liked the out-house work a lot more than the in- house work. So the board were battling among themselves about what they wanted. I was clear about what I wanted. I was really very interested in all the national issues and not that attentive any more to the service issues.

Cowan: So you were beginning to feel like moving on.

Kailes: Restless, losing interest, and looking around for someone to take over. I never found the person.

Cowan: So did you leave?

Kailes: I left. The board, they were battling with each other about this, and I said, “You know, I don’t want to do this any more. I’m not going to fight this any more. I think it needs to be done this way, and some of you think it needs to be done that way, and I don’t want to do it that way so I’m not going to do it.”

Cowan: So you left in 1989. You’d been director for eight years?

Kailes: Yes.

Thoughts on Disability Community, the ADA, and Independent Living

Cowan: Well, before we move on to what you went to, looking back then, from that vantage point, how had things changed in the disability community in terms of, you know, recognition of the movement?

Kailes: I think the movement became much more ingrained in the system. I think there was a recognition of the value of centers. Communities started to treat the center as more of an equal service provider, counting on them to do things. I think we became more sophisticated in our advocacy and more sophisticated in working in Sacramento and Washington, and building a national organization and the importance of a statewide organization. 45

Cowan: Were the threads of ADA [Americans with Disabilities Act] forming up by then?

Kailes: Yes, we were very involved and were involved in the beginning formulation of “What should be in this ADA?” I remember going to meetings in Washington sponsored by the National Council on Disability, beginning formulation meetings of what this should be like and what it should look like. Yes, that was all really mushrooming in ’88 and ’89.

Cowan: Was that exciting?

Kailes: It was. And when I left the center I actually went to Washington for a time and just stayed there and lobbied.

Cowan: Did you?

Kailes: For the passage of the ADA, for a good two or three weeks. That was great. That was exciting and fun. I could have done that forever. I loved that stuff.

Cowan: You’re probably a born lobbyist. [laughs]

Kailes: I loved doing that. I had some free time and I could do it. I thought it was very important and meaningful and every day was different. It was a great time.

Cowan: Sounds like it. Do you recall just thinking back at that time in your own life and saying, “Boy, here we are about to pass this kind of thing. Whoever would have dreamed of this happening when I was young?” Any inklings?

Kailes: No. I was kind of slow on the uptake. It didn’t occur to me until later. But later I thought, “Oh my God, if I would have had that then!” Like the library job, “Oh please, give me a reasonable accommodation. What’s the problem here?” Now when I interview people like you do and hear about their struggles in terms of putting together their own accommodations, we talk a lot about if we would have had then what we have now we would have all been Einsteins because we would have had what we needed. I mean, just think, the computer has made all the difference in the world.

Cowan: Think of your clunky typewriter.

Kailes: Really, or a little laptop. The accommodations, it’s just incredible. 46

Cowan: Can you think of when you recognized this as a movement, like the civil rights movement and gay rights movement? Do you recall when that was?

Kailes: I think I recognized it as a movement after I saw CIL [Berkeley]. After that first trip I realized there was something big here and I realized this was the beginning of something major. That’s when I think I realized it. Now, did I get every nuance of it? I think I got that incrementally over the years. It kind of seeped in. I didn’t get it all at once. It took time to assimilate it all and connect all the dots. There was not one “aha” experience, there were many. There were many and they were slow in coming.

Cowan: Do you think of it as the same thing, disability rights and independent living, or do you think of one as being separate from the other?

Kailes: I think of them as combined movements that support each other. Independent living has more of the service part to it, but otherwise it’s part of the same movement, I think. Sometimes independent living has too much tunnel vision in terms of looking at only their own funding as being first, but hey, that’s understandable.

Independent living has stayed away from health care for the most part, and it’s because of the philosophy about how detrimental the medical model was to the negative perception of disability. It’s only, I think, in the last several years that people have become aware that health issues can’t be ignored, that people are aging, and that some people with disabilities have to use the medical system all the time, and it’s not very good, and it’s getting worse. Something needs to be done if we don’t want people to die off on us. Gradually, I think, more people are coming around, but health has never been a major commitment of NCIL’s.

Cowan: That’s interesting.

Kailes: The anti-medical model’s value system was so strong about doctors telling us what to do and what we couldn’t do, and certifying if we are disabled or not. How ludicrous that is. The whole patient model, you have to patiently wait for someone to do something to you. And the whole thing about getting cured versus being accepted for who you are. And not looking at your capacity and your capability, and the fact that we’re going to have you learn how to tie your shoes even if it takes you the rest of your life, when that’s not productive. I think that those experiences have a lot to do with people still not crossing the line in terms of understanding the value of getting involved in health advocacy. 47

Cowan: That’s a good explanation.

Kailes: In a movement, when it starts out, everything is black and white, nothing is gray. Consumer control, or everything. It’s either yes or no, so “No.” “Medical, no, we don’t do that.” It’s only when the movement matures and begins to see the gray that people start to go deeper in their understanding of what’s involved. There are many people who have to interact with the health care system weekly and we can’t ignore those people.

Cowan: Is a major issue now?

Kailes: It seems to be a much more major issue because of how badly the system has handled care, with ten-minute visits and health-care providers who know little to none about disability. So you have to look and look and look for someone who has a remote clue about how your disability impacts your health or doesn’t, someone who can give you good advice.

Cowan: So doctors aren’t trained any better than they ever were in regard to disability.

Kailes: Right.

Cowan: I was asking you about your reflections on how things have improved for people who are living more independently. If health care is a piece of that now that housing is more accessible and schools are more accessible.

Kailes: Housing is still a problem. People have some better skills in terms of how to get things they need.

[Begin Tape 3, Side B]

Kailes: I’m reminded of how things have changed when I meet people in college now with disabilities. They are so much more sophisticated regarding what their rights are. They understand what their rights are, and they’re much more able to articulate a sense of disability identity and disability pride, and that’s really cool. I just saw that a couple days ago when I interviewed some people at NCIL. I did a series of interviews of community organizers for a training DVD and one of them was a youth representing the college movement. They are just so much more politically savvy and sophisticated and had the rights- bearing attitude down to a tee. I was really impressed. She talked about the importance of affiliating with people with disabilities and the power that comes from that. I think she represents a whole generation that will get further and faster because they get it. That was very 48

comforting. It felt like a sense of achievement. Like going through USC thirty years later and, “Oh that’s really cool that you get this and you can run with it, and you don’t have to get it incrementally like I did. You get it when you were eighteen or nineteen or twenty-two. That’s really good.” It doesn’t represent everybody, but it’s the group of us that will be the next leaders.

Cowan: And do you see leaders coming from the young people that you see?

Kailes: I haven’t been really connected with the youth movement, but she was a leader in the movement. If that’s what they’re like, then I’m impressed. I think people expect more. They take some of the rights for granted now and will take the bar to a higher level, I hope.

Cowan: I hope so too.

Kailes: To me it’s a game of chutes and ladders.

Cowan: I know that game.

Kailes: You kind of make progress and then you slide back down, and then you make a little more progress and you slide back down. It’s always been like that. Working in Sacramento and Washington, we think we won this, we got this, and now we’re trying to defend it and protect it from the backlash. I think technology makes life a lot better and that’s been, I think, what has had the biggest impact of all.

Cowan: In what way?

Kailes: In every way. In people’s productivity as someone with a disability, in their mobility, I mean, my productivity, my mobility, and our ability to communicate together. Within the disability community everyone is on the same page often because they are all reading the same emails. It’s like we all read the same newspaper. So, you don’t have that knowledge gap any more. Everybody gets the information. So we cover and share much more information together, nationally and internationally, than we’ve ever done before, and I think that’s made a tremendous difference. And it’s helped with the isolation factor. There are all these support groups that you don’t always have to go to, you can just get them online. There are hundreds and hundreds of those peer-counseling online networks. You don’t have to go to a center.

What I’d like to see is independent living taken to the next step, which is integrated very heavily into the whole assisted-living movement and whole corporate movement. They’re making billions of dollars in that industry, and I worry about the core values. We should take our values and infuse them, and profit from that business as well. That’s been one 49

of my frustrations with independent living. It might not be fair, and I don’t have all my fingers on all the pulses, but I always wanted to go further faster and be more at the cutting edge of what can be done. Be involved in that industry of assisted living and mold it into what it needs to be to reflect our values.

Cowan: And by assisted living you mean—?

Kailes: Everything from retirement living to group living, or people who choose not to live in their own single home any more but choose to live with a group.

Cowan: Shared housing, co-op.

Kailes: Shared housing, co-op housing, apartments.

Cowan: And how would you like to see that incorporated into the corporate mentality that we have already there?

Kailes: I think it’s an industry that’s growing as America ages, and I think that many more people will be taking advantage of it. I worry that it will take on a geriatric look instead of an independent living look. I think that we have an opportunity to impact and influence it now.

Cowan: Who’s doing that?

Kailes: I don’t know. I don’t think anyone’s doing it. It’s just one more thing that needs to get done. I don’t think we look enough at infusing what we are doing outside the independent living system enough. I don’t think we carry it and transplant it like we need to. It might not be fair, but I’ve always been one that, what’s the saying, “I was born too soon.” I’d like to be in college now with all of this technology and these accommodations, and understanding of what people need. And I think that’s going to continue to change quickly. The things that we know now we would laugh at. It takes an hour to get to Oakland from L.A. We’ll look back and think, “What a waste of my years, flying. It took an hour.” It’s like thinking about using erasable bond paper.

Cowan: I know.

Kailes: I think, with disabilities, voice input systems for computers and all this stuff is so critical, so important.

Cowan: Yes, think of that.

Kailes: I think that will change incredibly. Are people going to be able to access it and afford it? That’s another battleground. 50

Cowan: That is a battleground. You worry that it could become the property of the wealthy, the elite.

Kailes: Yes, and I think it’s getting more and more that way. People can afford it or people who have what I call the health literacy skills to go after what they need within that system, which is knowing and really understanding how that works. That’s one more set of assertiveness and survival skills that maybe we are ignoring, and need to hone up because we may be defending the value of our life soon, in terms of healthcare. Are we worth saving?

Cowan: Are you speaking of the Not Dead Yet movement?

Kailes: Well, yes, and broader health care rationing. Who gets it and who doesn’t? It’s much bigger than Not Dead Yet, I think.

Cowan: I think that’s a subsurface issue. People aren’t really aware of it yet, the rationing of health care.

Kailes: And it’s happening all around us. It’s very clear to some of us.

Cowan: Are you working on that at all?

Kailes: To a degree, I mean, parts of it, yes.

Focusing on Health Issues as Advocate and Consultant

Cowan: Do you want to say a few words about what you’re doing now in your own business? Or do you feel complete to just stop as you leave Westside Center?

Kailes: I continue to work in the field and have contracts that relate to working with groups that are focused on disability issues.

Cowan: Who hires you?

Kailes: I’ve done a lot of work with research and training centers on independent living, on managed care, on aging with disability, on health and wellness. I’ve been working with the new Western University, the Center for Disability Issues and Health Professions, in Pomona, California.

Cowan: What was that? 51

Kailes: CDIHP, the Center for Disability Issues and Health Professions. I’ve been doing a lot of writing. I’ve done a lot of training over the years. I’m trying to focus now more on health issues because I’ve been a generalist for a long time, and I’d like to be able to focus a little more on health. I still do a little bit of independent living and training, philosophy, and online kinds of courses, but I really want to go deeper in a narrower way.

Cowan: Will you work on the health issues on a legislative level or on an organizational level?

Kailes: Both all policy, regulation, training and consumer education related to being savvy.

Cowan: What do you think of the universal, single-payer kinds of health care?

Kailes: That’s the goal. That’s the objective. I don’t know if we’ll ever get there or what it will look like if we ever do. The system is a mess, and it’s more of a mess for people with disabilities because it’s a lot of energy to put together services for yourself from a system that doesn’t know much about disability. There are a lot of people suffering because of that in terms of their health.

Cowan: In looking back, it just dawns on me to ask you, do you feel that the average person is more aware of the issues of the disabled community—? [phone rings]

Kailes: The average person? I think in a very surface way, i.e., accessible parking spaces, those spaces, those ramps, those bars in the bathroom. The awareness seeps in that way, but if you want to integrate any of the deeper needs in terms of their own future needs or health or wellbeing, people are quite clueless, for the most part. Although, there is a portion of the population, I think, who has benefited from our movement. I do see some people who, when they acquire a temporary disability, instead of staying home they will go out and get themselves a chair or get themselves a scooter, rent a scooter, just to carry on with their business. I’ve been impressed by those people that say, “Screw what anyone else thinks. I’m not intimidated. I’m not oppressed by needing to use something that’s going to help me do what I need to be doing. I’m just doing it.”

I wish more people would get that kind of message. I’m not sure if people are really there or making those connections about all our issues that they actually will someday have much more in common with. It’s probably still way too threatening. We always say that we are the canary in the mine when it comes to health care, and I don’t think people understand or get that either. Or when it comes to living long or 52

aging. I don’t know. I don’t think so. Not yet. It’s going to take a long time to connect those dots.

Cowan: I think so.

Clinton Appointee to the Access Board

Kailes: You know we haven’t talked about the Access Board. Is that even on your list?

Cowan: No, I do not even have that on my list, so tell me about the Access Board.

Kailes: I’ve been a Bill Clinton appointee, and I was appointed to the Access Board about seven years ago. That’s the agency that does all of the guidelines connected with ADA, the access guidelines, has done the 508 guidelines in terms of electronic technology, and has done the 255 guidelines in terms of telecommunications equipment. The board has a staff of forty and is made up of twelve federal agencies and thirteen public members that are appointed by the president and serve for a term and can be reappointed. I really enjoyed that work in terms of understanding and creating public policy, and having to work with other government agencies like Justice, Commerce, Veterans Affairs and the Post Office, and HHS [U.S Department of Health and Security]. It’s been a real education in terms of the way policy is made and how government works, and what the timing is like to do things like that. Also the reality of what it takes to get those guidelines into a rule and on the streets.

Cowan: Sounds like you’d like to do more of that.

Kailes: I would, but my time is almost up on this board. The education has been very valuable in terms of perspective on how things get done and who does what to who, and what doesn’t get done and why.

Cowan: Were there accomplishments over the time you served that you can point to?

Kailes: Hopefully I can say that we revised the access guidelines for ADA, after ten years, and that we’ve done access to play areas. We have access guidelines for play areas, play equipment, and will eventually for all of the recreation issues around golf, amusement rides, some fitness centers, tennis, and all of the recreational venues. We started in on passenger vessels. 53

Cowan: That would be good.

Kailes: Yes. We are just starting those guidelines. Parks and trails will be soon to follow. We’ve actually done a lot. It’s not all complete and it takes a long time, a long time. And it’s hard to sit there and know that as you deliberate and compromise and cajole and do the analytical studies on the cost analysis, things are being built all around you that could be being built better and more accessibly. I think, if this rule was on the streets now instead of us still tinkering with it to get it right and to get it passed, what a difference it would make.

Cowan: Any chance you’ll get reappointed to the board?

Kailes: I already was reappointed, so it’s my second year term, and I would never be appointed in this administration [George W. Bush].

Cowan: Do you think the work that’s going to be done now is going to be equal to what you’ve done, or do you think the commitment on the part of the government to work on these issues has changed?

Kailes: Good question, good question. The Clinton administration appointed really excellent people to the board. When I came on the board there were a lot of old appointees from the Bush administration.

Cowan: George Bush, senior.

Kailes: Yes. There is a qualitative difference between the appointments that Bush made and the ones that Clinton made. Clinton’s appointments for the most part were very enmeshed in the issues and very knowledgeable about access, and could really contribute a great deal to the success and the depth of what we were doing. I fear that there will be some changes that will decrease that expertise for a while on the board.

Cowan: Does the whole board change when the administration changes?

Kailes: No. You change when your term is over; however, the government appointees change. Then they can re-appoint you. So my term is over in December, and it depends how quickly they move. There’s a lot on the plate right now so they might move quickly because they want their people in there voting for their issues.

[End of interview]

54

KATHRYN COWAN

Research Interviewer/Editor Regional Oral History Office Disability Rights and Independent Living Movement Oral History Series

In the 1980s, Kathryn Cowan was a job developer for a disadvantaged youth organization. She developed a program that brought youth together with senior citizens who served as mentors by sharing their personal and work histories. She subsequently served as librarian for HomeBase, the Center for Common Concerns, a public interest law firm that develops and supports policies and programs to reduce and eliminate homelessness.

She has a long-standing interest in political and social change and has followed closely the civil rights, antiwar, and women's movements, as well as the disability rights movement. In 1995 she was diagnosed with multiple sclerosis.

In 1997 she joined the staff of the Regional Oral History Office, The Bancroft Library, University of California, Berkeley, as an interviewer and editor for the Disability Rights and Independent Living Movement oral history series.

Kathryn Cowan has a B.A. in Communications from California State University Hayward.