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Regional Oral History Office University of California The Bancroft Library Berkeley, California Social and Political Advocacy in the Epilepsy Community Elizabeth Savage LOBBYIST FOR THE EPILEPSY FOUNDATION: THE PASSAGE OF THE AMERICANS WITH DISABILITIES ACT Interview conducted by Ann Lage in 2004 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 Elizabeth Savage, dated November 9, 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. 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: Elizabeth Savage, “Lobbyist for the Epilepsy Foundation: The Passage of the Americans with Disabilities Act” conducted by Ann Lage, 2004, Regional Oral History Office, The Bancroft Library, University of California, Berkeley, 2010. iii Liz Savage, 2009 photo courtesy of Governor’s Council for People with Disabilities, Indiana iv v Table of Contents—Elizabeth Savage Interview History vi Interview 1: November 9, 2004 Audiofile 1 1 Personal background, vision impairment, family attitude toward her disability, independence and self-accommodation—Interest in politics in high school and college—Working on Carter campaign and in the White House—Hastings Law School in San Francisco, no accommodation in taking bar exam—Work on Geraldine Ferraro campaign, growing interest in disability issues—Taking job as lobbyist for Epilepsy Foundation, 1985, conservative nature of the foundation in mid-1980s, Tony Coelho’s role in changing foundation—Background to the ADA coalition, disability legislation in late 1980s—National Council on Disability initial proposal for ADA in 1988, unrealistically radical—Joint legislative hearing with testimony by Coelho and others with disabilities, a turning point in disability law—1989 rewrite of the act, getting cosponsors—Reasons for success of bill: lack of press scrutiny, Coelho’s influence, bipartisan appeal, multi-disability lobbying teams, difficult message to oppose—Functioning of the coalition as bill was going through Congress, decision to hold firm on compromises— Distinctions between lobbyists and their sometimes conservative boards, between public message and what actually happens—Involving the grass-roots activists in the process—Role of people with epilepsy in ADA effort—Coelho’s role after he left Congress—More on role of Epilepsy Foundation: resources, structural work for the coalition, Coelho’s support—Leaving EF for DREDF, training program on disability rights. Audiofile 2 29 National training director for DREDF—Comments on scam-artist consulting businesses distorting readily achievable requirements of ADA—Working in civil rights division of Justice Department: helping to build a comprehensive enforcement program, Janet’s Reno’s support for disability issues, Deval Patrick, John Wodatch—Meaning of ADA for people with epilepsy. [End of interview] vi Interview History—Elizabeth Savage Liz Savage was interviewed for the Social and Political Advocacy in the Epilepsy Community project. As assistant director of Government Affairs for the Epilepsy Foundation of America, she was one of several key lobbyists for the Americans with Disabilities Act of 1990. Savage was interviewed on November 9, 2004, in Washington DC, where she was working as director of health and housing policy for the Disability Policy Collaboration, a partnership of The Arc and United Cerebral Palsy. During the audiotaped session, she discussed her experience with disability as a person with low vision, her background in law and politics, and her involvement in the passage of the ADA. She talks briefly about her subsequent work with the Disability Rights and Education Defense Fund and as special assistant attorney general for civil rights during the Clinton Administration. Despite an evident reluctance to discuss behind-the-scenes events, her perspective and reflections contribute to an understanding of the road to the ADA and the role of the Epilepsy Foundation in the passage of this landmark legislation. Savage was sent the verbatim transcript of the interview session and made no changes. The Social and Political Advocacy in the Epilepsy Community project includes the perspectives of self-advocates, parents, and representatives of epilepsy organizations. Interviews explore the development of grassroots political activism, changes in the social and political climate surrounding epilepsy, and the role of the epilepsy community in the disability rights movement. Funded by a Rennie Grant from the University of California, Berkeley, it includes interviews with key figures in disability politics like Tony Coelho and Liz Savage and with others who have worked for education, employment, medical research, and civil rights for people with epilepsy. The epilepsy community project is an outgrowth of the Regional Oral History Office’s ongoing series of oral histories on the disability rights and independent living movements, and all of the interviews in the project are archived online at http://bancroft.berkeley.edu/collections/drilm/. 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. Most of the collection of Regional Oral History Office can be accessed at http://bancroft.berkeley.edu/ROHO. The audiotape of this interview session is available in the Bancroft Library. Ann Lage, Interviewer Berkeley, California October 2010 1 Oral History with Elizabeth Savage Interview: November 9, 2004 [Begin Audiofile 1] 01-00:00:00 Lage: Now we’re recording and today is November 9, 2004, and I’m interviewing Liz Savage for the Epilepsy Advocacy Project. Liz, like it or not, we always start out with personal background—just to get a sense of where you came from. Tell me where you were born and raised and—. 01-00:00:28 Savage: I was born in 1955 in Norwich, Connecticut, which is a small town in southeastern Connecticut, and when I was about two years old my parents realized that I had poor vision and I was taken to Boston to eye specialists and began wearing glasses at a very young age. My vision continually deteriorated as I grew up, and in high school I had two detached retinas, but from a disability perspective, growing up in the late fifties and the sixties I was taught to ignore my disability. My parents considered me to not have a disability, and the same expectations were made of me as were of other, non-disabled children. Part of that is because my family was very familiar with stigmas surrounding disabilities since my mother had bipolar disorder, which was never discussed in those days. 01-00:01:50 Lage: Was it discussed in your family? 01-00:01:51 Savage: No. 01-00:01:52 Lage: I see. So the idea was, don’t acknowledge it. Don’t acknowledge having a disability? 01-00:02:03 Savage: Well, the idea was you can succeed and the disability does not have to get in your way. And the positive part of that is that I was encouraged to be incredibly independent, for which I’m very grateful. I was not patronized or coddled. I did not grow up with a sense of dependency in any way, and I was fortunate in that my parents had the resources and the moxie and the wherewithal to insure that I had the best medical treatment that modern medicine had to offer. So because I had such incredible medical treatment a lot of my vision was saved. If I hadn't had the access to the specialists I did, I probably would have been blind at age fifteen. 01-00:02:55 Lage: Were these surgical interventions? 2 01-00:02:59 Savage: I had two detached retinas that were surgically repaired, and others were—I was, you know, my glasses kept getting thicker. In my mid-twenties I went to a contact lens specialist, and I wear one contact lens in my functioning eye, so that often people don’t view me as having a vision impairment because a lot of my low vision is corrected through contact lenses. 01-00:03:37 Lage: So technology has helped? 01-00:03:39 Savage: Yeah, considerably.