Regional Oral History Office University of California The Bancroft Library Berkeley, California Disability Rights and Independent Living Movement Oral History Project Thomas K. Gilhool LEGAL ADVOCATE FOR DEINSTITUTIONALIZATION AND THE RIGHT TO EDUCATION FOR PEOPLE WITH DEVELOPMENTAL DISABILITIES Interviews conducted by Fred Pelka 2004-2008 Copyright © 2010 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. ********************************* All uses of this manuscript are covered by a legal agreement between The Regents of the University of California and Thomas K. Gilhool, dated April 6, 2005. 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. Excerpts up to 1000 words from this interview may be quoted for publication without seeking permission as long as the use is non-commercial and properly cited. Requests for permission to quote for publication should be addressed to The Bancroft Library, Head of Public Services, Mail Code 6000, University of California, Berkeley, 94720-6000, and should follow instructions available online at http://bancroft.berkeley.edu/ROHO/collections/cite.html It is recommended that this oral history be cited as follows: Thomas K. Gilhool, “Legal Advocate for Deinstitutionalization and the Right to Education for People with Developmental Disabilities” conducted by Fred Pelka between 2004 and 2008, Regional Oral History Office, The Bancroft Library, University of California, Berkeley, 2010. iii Thomas K. Gilhool Fortieth Anniversary Symposium of the Public Interest Law Center of Philadelphia, October 1, 2009. Photo by Lauren R. Mirowitz iv ACKNOWLEDGMENTS The Bancroft Library’s Disability Rights and Independent Living Movement project was launched with 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. Funding from DBTAC-Pacific ADA, as part of a study of “Antecedents, Implementation, and Impact of the Americans with Disabilities Act,” supported the continuation of the disability history program and the completion of the Thomas K. Gilhool oral history. Thanks are also due to other donors to this program over the years: Dr. Henry Bruyn, June A. Cheit, Claire Louise Englander, Raymond Lifchez, Raelynne Rein, Judith Stronach, the Prytanean Society, and the Sol Waxman and Tina P. Waxman Family Foundation. Any of the views expressed in the oral history interviews or accompanying materials are not endorsed by the sponsoring agencies or individuals. v Table of Contents—Thomas K. Gilhool Series History xi Interview History by Fred Pelka xvii Interview 1: September 23, 2004 Audiofile 1 1 Birth in Ardmore, Pennsylvania in 1938, grandparents’ and parents’ background—Grandfather and uncle killed in a mining accident, father also in the coal industry, working in a wholesaling office—Bus trip south in 1953, first exposure to discrimination when the bus driver enforces racial segregation as the bus crosses into the South—First experiences with black people, a black housekeeper who worked for his mother, the small black neighborhood in Ardmore, playing with housekeeper’s son—Birth of his younger brother— Discovery that his brother had a disability, brother is labeled mentally retarded— Encountering the attitude that his brother’s disability was his parents’ fault— Father has a “nervous breakdown” in 1947, in part as a result of harassment at work due to being the father of a disabled child—Brother is sent to “special class” in public school—Family moves to Sauquoit, New York—More on father’s breakdown, hospitalization and electric shock treatments—No discrimination against Bob among his classmates or peers—Two children on his block contract polio in 1950—Visits the Bryn Mawr polio wing—Memories of childhood friends and family occasions when Bob was included—Influence of Catholicism and the preaching of Bishop Sheen and Norman Vincent Peale—Never personally experienced guilt or shame about his brothers’ disability, never blamed his family—Medical explanation for Bob’s disability—Discussion of the eugenics movement—Bob institutionalized at Pennhurst State School in 1954, following father’s death—Getting Bob admitted to Pennhurst—Discussion of the backgrounds of some of the judges in what would become the Pennhurst case— Ray Broderick, Milt Shapp, Arlen Adams—His role in having Bob institutionalized—Visiting Pennhurst “campus” with his mother—Family not allowed to visit when Bob first institutionalized, but then visited him quite often—Learning more about Bob’s life later, during the Pennhurst trials—Bob’s friends at Pennhurst, and the symbolism of “Jailhouse Rock”—“They talked a lot about restraints...and how lazy the attendants were...” Audiofile 2 24 Bob transferred to White Haven, a former tuberculosis sanitarium—Bob’s current medical problems—White Haven a better place than Pennhurst, Bob able to come home for visits much more frequently—Discussion of staff at White Haven, Bob’s relationships there—More details about Pennhurst: number of residents, description of the physical plant—History of Pennhurst, how it was founded after lobbying by the eugenics movement—Quotes from The Menace of the Feebleminded (eugenics pamphlet published in early 1900s)—Reads from the vi appendix to the Olmstead case on history of Pennhurst—Gilhool’s first involvement with poverty rights/minority rights law—Goes to his first law firm and then to Community Legal Services—Reasons for going to law school—Time at Yale Law School—Involvement with the National Student Association, gathering support for southern civil rights student activism in early 1960s— Growth of northern student movement—Helping to pull together the Law Students Civil Rights Research Council—Doing legal advocacy on poverty issues as part of the Yale Law School Tutorial Project—Writing about the similarities between poverty law and the framing of the protection and advocacy systems— Graduating law school, going to England as a Fulbright scholar—Working in Philadelphia finding plaintiffs for the Girard College civil rights case—Other civil rights work in Philadelphia—Helping to found the Community Law Service (CLS)—Work trying to save poor peoples’ homes from being destroyed by “urban renewal” and beating back plans for an eight lane expressway through Philadelphia—Fighting residency requirements for public assistance and fighting for legal services for poor people—Organizing the Philadelphia Welfare Rights Organization—Getting the first call from PARC about taking their case (PARC v. Pennsylvania)—Meeting Jim Wilson and Dennis Haggerty from PARC—Gunnar Dybwad, and his son Peter Dybwad—Learning about the ARCs, and the parents movement—The objective of the suit was to close down Pennhurst. Audiofile 3 45 Framing PARC v. Pennsylvania—Unease and controversy within PARC and ARC about the wisdom of bringing a lawsuit, of trying to shut down the institution— Role of Gunnar Dybwad in that decision—Gilhool “disappears” for nine months to research the law and develop a strategy—Meetings with Dybwad, Jim Gallagher and Donald Steadman—Gunnar and Gilhool become “intellectual companions”—Dybwad’s immediate recognition of the importance of Brown v. Board of Education to disability rights—Dybwad’s special relationship with PARC—“Right to treatment” and PARC—Mental health law as cutting-edge civil rights law—Decision to frame PARC v. Penn. as a right to education lawsuit— Secret tape recordings of arguments before the Supreme Court—Discussion of a 2004 conference in New York City of Pacific Rim legislators, rehabilitation professionals and disability rights activists from Japan and South Korea. Interview 2: April 11, 2005 Audiofile 4 59 Decision by Eleanor Kephart to resign from ARC because of the PARC decision to litigate—Others in the ARC reluctant to sue the state—Tension in ARC between providing services and doing advocacy, similar tensions evident in Japanese movement today—The development of the legal strategy for PARC v. Pennsylvania, five possible strategies were considered: the right to education, the right to treatment, due process, et cetera—Some strategies rejected for fear a victory would strengthen institutions, rather than close them—Development of vii treatment in the community as a right—Development