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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

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 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

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

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?

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. But when I was growing up there was no assistive technology, there were no support groups for parents, there was no laws that provided accommodations—and it was a time when parents didn’t really question doctors in a holistic way, so I did a lot of things that in retrospect I shouldn’t have done like contact sports, which for people with low vision have the potential to destabilize your vision by causing a detached retina. So I grew up in a time that was radically different than the life that kids with low vision or other disabilities experience today.

01-00:04:28 Lage: Did it affect your schoolwork? Did your low vision impede school progress?

01-00:04:33 Savage: You know, there were some things where in retrospect I look at why I was never that good in math, and it could be that I could never see the blackboard very well. I did fairly well in school because I worked hard, and I think I developed—when you have low vision as well as a lot of other disabilities you learn how to self-accommodate, and I did that and became very good at it, and to some degree as my vision has deteriorated as I’ve gotten older I’ve realized that in some ways I accommodated too much. My visual habits did not work in my best interest as I’ve aged.

01-00:05:13 Lage: What kind of self-accommodating strategies?

01-00:05:17 Savage: Like a lot of other people I function on memory and repetition and doing things in a similar way.

01-00:05:33 Lage: Today what would schools have provided you? How would it be different?

01-00:05:42 Savage: Oh, I think, well, first of all there are technologies, and I wear assistive technology glasses that allow you to—fortunately for me I can use glasses that have a lens in them that use the vision in the periphery of my retina to see distance, and that wasn’t available when I was growing up. And computers have really opened up a vast array of information. I would think for a child of low vision today the ability to use a Kurzweil screen reader would

significantly enhance their academic performance. That kind of technology has really transformed life for people with low vision. And on the other hand, there’s much more of an expectation in terms of how we function as a society in terms of speed, and when you deal with low vision you realize that it requires a lot of time and a lot of energy. But anyway—

01-00:06:51 Lage: Did you—

01-00:06:51 Savage: —so that’s how I grew up, and one of the things I did in high school is I started volunteering in political campaigns and became very interested in politics.

01-00:07:01 Lage: Was your family political?

01-00:07:03 Savage: No. I just—friends of mine had done it, and it was a way to—it was a social thing and growing up in a small town it was one of the things that provided social structure. So I did that in high school and in college and worked on President Carter’s campaign in 1976 and had the opportunity to work for his pollster, Patrick Caddell, where I learned a lot about public opinion and met a lot of influential people in the Democratic Party and in the Carter administration and when I graduated college—I went to Tufts University in Boston.

01-00:07:49 Lage: What did you major in?

01-00:07:51 Savage: Political science; I was fortunate enough that my first job after college was working in the White House doing scheduling in the events office working for the appointments secretary to the president, and I did that for a couple of years until I became convinced that I was going to become a political hack and needed some credibility other than what I had developed in campaigns and didn’t want to do that for the rest of my life and be dependent on political consultants and going from one campaign to another. So I applied to law school and started law school in 1979 at Hastings—

01-00:08:38 Lage: At Hastings?

01-00:08:38 Savage: In San Francisco.

01-00:08:39 Lage: How did you happen to go out to San Francisco?

01-00:08:42 Savage: Well I applied to like nineteen schools, and I had to live in a place with good mass transit, and Hastings was frankly the best school academically that I got into. I didn’t get into—I wasn’t Harvard material; I don’t even think I got into BU or Georgetown. And so for academic reasons and because I had never lived in San Francisco and the climate was good—it was just new. I have no regrets about that; San Francisco is a great place to go to law school. And then when I graduated in 1982, I took the California Bar [exam], and prior to taking it I had asked—in 1982 my vision had deteriorated significantly, but I wasn’t legally blind. And I inquired with the California Bar whether I could have, now we know it as accommodation.

01-00:09:50 Lage: The word wasn’t—

01-00:09:51 Savage: Well, it wasn’t as mainstreamed as it is now and I asked, and I was told that because I wasn’t legally blind and a doctor couldn’t certify the degree of my vision impairment that I was not entitled to anything. So the California Bar at that time was two sections; it was two days of essays, for which I used—I always used a correcting selector typewriter in law school. And that was not an accommodation specific to my vision impairment; a lot of people typed their exams. And then it was one day—part of the test is called the Multi- State; it’s given all across the country. It’s 200 objective questions in six subject areas, and the problem for me is that it was printed on very cheap newsprint with really small fonts and poor quality printing, and you had to fill in your answers on a computer card with bubbles. And like other standardized tests, that was very stressful for me, and the first time I took the test I flunked it by four questions, and had passed the essay. And at that time they allowed you to take just the Multi-State again. And the second time I flunked it by two questions, and the third time I passed, and that was kind of the first time I realized my vision was a barrier for me, because I had succeeded in everything I had tried to do, with the exception of driving. I drove for a very limited period of time.

01-00:11:42 Lage: Did you have trouble in law school with all the reading and—?

01-00:11:46 Savage: No; because I figured out how to do shortcuts, and I think typing my exams helped a lot, because I graduated in the top third of my class; so—.

01-00:11:58 Lage: But you didn’t get any special accommodation in school?

01-00:12:01 Savage: No, but you know I just figured out how to work it.

01-00:12:07 Lage: So this exam was kind of the first time you might think of the term discrimination, or did you even think of it that way?

01-00:12:15 Savage: I don’t think I thought of—I don’t know; in retrospect I do. It was a clear failure to accommodate, which the purpose of accommodation is to let you compete on a level playing field, and I certainly wasn’t doing that, but at the time in the early eighties, I had not been familiar with the disability rights movement. And during that whole period I was clerking and working for a law firm that specialized in plaintiff’s product liability litigation and represented victims of airplane crashes. A few of the clients I worked with had acquired disabilities as a result of airplane crashes—paraplegics—and so I learned a lot about that and their needs and access in the context of working on cases that would compensate them for their injuries.

And then in 1984 the Democratic convention was in San Francisco, and Gerry [Geraldine] Ferraro was nominated to be vice president, and many of my former colleagues and friends were in San Francisco, and I had the opportunity to come back to Washington and be one of her schedulers on the campaign, which I did, and after that I realized I didn’t—I knew I had never wanted to be a litigator, that I never went to law school to be a litigator and that wasn’t really my forte, and I decided that I wanted to come back to Washington and do policy work. It seemed to me that because I had this personal interest in disability that that would be the most fruitful avenue to pursue. And through people in the Ferraro Campaign I met Anne Rosewater, who worked for Congressman George Miller on the Select Committee on Children who had worked very closely with DREDF [Disability Rights Education and Defense Fund], with Pat Wright, and Arlene Mayerson, and Mary Lou Breslin. I kind of hung out with Pat and learned a lot from her and shadowed her and did some project for DREDF, which I can't remember the specifics of, and then an opening came up at the Epilepsy Foundation.

01-00:14:48 Lage: Uh-hm; now let me just—

01-00:14:49 Savage: A lobbyist opening.

01-00:14:51 Lage: Can we just back up one minute?

01-00:14:53 Savage: Sure.

01-00:14:54 Lage: A little bit more about what you did as scheduler; what does scheduler involve for the Ferraro campaign?

01-00:15:01 Savage: Oh, I mean, there were four of us, and it’s a lot of organizational work and interactive work. You’re organizing campaign events. I mean, I guess—

01-00:15:16 Lage: Did you do it mainly for Ferraro or for both—?

01-00:15:19 Savage: Well, we did it for Ferraro, but we were part of a massive campaign. The one thing that distinguishes me from a lot of people in the disability movement is I had a lot of campaign experience before I came to the disability community, and most of my friends were political, and I view the world in political ways, which is different from a lot of people and from other people in the community.

01-00:15:45 Lage: And then you met Anne Rosewater, who worked for George Miller and—

01-00:15:50 Savage: Who is very close to DREDF—did a lot of work with DREDF—and she introduced me to Pat Wright and Arlene Mayerson, and this was in the early winter of ’85 or spring of ’85, and then—

01-00:16:07 Lage: So did that attract you as an issue that you wanted to work on?

01-00:16:11 Savage: Well, I wanted to work on disability issues and I had three friends in the Ferraro campaign who were hooked up with Pat and with DREDF, and there were no openings with DREDF. I was a lawyer and because I had a legal background I was kind of interested in civil rights, but also I had a political background, so lobbying seemed like it would be an appropriate avenue to pursue. And in the summer of ’85 there was an opening at the Epilepsy Foundation for an assistant director of Government Affairs to do lobbying on education and civil rights issues, and—

01-00:17:04 Lage: So the foundation was interested in civil rights issues when you came to it? I mean, was that your charge?

01-00:17:11 Savage: Well, like other nonprofits, they focused on a variety of issues affecting people with disabilities. Both programmatically and from a legal perspective, you know, healthcare was a huge issue. One of the lobbyists focused on healthcare; I focused on special ed, and employment discrimination was a huge issue.

01-00:17:38 Lage: Right; was that maybe their main civil rights issue?

01-00:17:40 Savage: Yeah; uh-hm. And I did other issues as well, which at the time, now I can't remember. I mean most of what I did at the time were special ed and employment discrimination work. Tony Coelho was on their board, and I had met him in July of 1980. It was my first summer off, between the first and second year of law school, and President Carter was going to his congressional district in Merced to do a town meeting for the 4th of July, and my former colleagues from the White House asked me to come help organize that. And it was a big coup for Tony, because he was a first-term congressman, to get the president of the United States in his district, and I met him in the context of doing that trip. So he knew me, and we had a lot of mutual colleagues and friends. So when that opening came up I went to talk to his staff, and he wrote a letter of recommendation for me and made it in his way clear that he would like to have me hired there, so I was hired.

01-00:19:06 Lage: Had you developed a close relationship with him in that—?

01-00:19:10 Savage: No; I met him once or twice.

01-00:19:11 Lage: Connected with him on disability issues at all or just on—

01-00:19:15 Savage: Political.

01-00:19:17 Lage: —political campaigning? Yeah, interesting; so you—

01-00:19:21 Savage: Yeah; but you know, I had enormous respect for him, as a politician.

01-00:19:28 Lage: Uh-hm; he seems to have real skills along that line.

01-00:19:32 Savage: Yeah.

01-00:19:32 Lage: So did you work with him in those early years? I’m thinking of pre-ADA; there were other [disability] issues going on and—

01-00:19:40 Savage: Somewhat, I mean the Civil Rights Restoration Act, somewhat, but he was very involved and for years he was and still is the spokesperson for epilepsy on the Capitol floor.

01-00:19:58 Lage: I mentioned to you before I turned the tape on that I am interviewing him but we covered just up to his congressional career, and everything I’ve read seems

to skip right to the ADA, and I wondered how involved he was in some of these other issues.

01-00:20:14 Savage: He wasn’t on any of the committees.

01-00:20:15 Lage: Fair Housing and—.

01-00:20:16 Savage: See, he represented an agricultural district so he was on the Ag Committee and was very involved in the Democratic Congressional Campaign Committee, so he wasn’t on any of the committees that considered the Civil Rights Restoration Act or the Fair Housing bill, but he would do floor statements. I mean the beauty of Tony Coelho that a lot of people don’t see is that he did a lot of his work behind the scenes, and you know, will never be—. The ADA in a lot of respects is due to his savvy and expertise and calling in a lot of chits.

01-00:21:02 Lage: Well, maybe we can talk about that along the way. It’s hard to balance these two aspects, what goes on behind the scenes in Congress—not to balance but to see what’s the key thing—and what the movement lobbying, grass-roots advocacy, how they work together to make something happen.

01-00:21:21 Savage: Uh-hm.

01-00:21:25 Lage: Anyway what was the Epilepsy Foundation like? I just know from what Tony said—he described it as dominated by drug companies and doctors.

01-00:21:38 Savage: Yeah; I remember when I first got hired there, I went into thank him and he said, [laughs] “Well, I want you to raise hell because they’re much too conservative and we really need to change that.” And I said, “Thanks a lot, you really shoved me down”—they didn’t really want to hire me, I don’t think, at the time, and he really shoved me down their throats. And so I really had to prove myself, in a way.

01-00:22:06 Lage: So you were in an institution that maybe wasn’t quite ready for you.

01-00:22:11 Savage: You know, I can accommodate fairly well and I’ve always done that, but yeah, it was dominated by doctors.

01-00:22:24 Lage: And were they more interested in the medical issues than in these advocacy issues?

01-00:22:27 Savage: Historically, they had been interested in research and put a lot of effort into that, but I think, like others in the disability community, the ADA offered them an opportunity to—the interesting thing about the ADA is that it was the first time that consumers and parents were really in the forefront of presenting the message of what was needed.

01-00:22:51 Lage: Right.

01-00:22:52 Savage: You know and he took the lead on that as a consumer.

01-00:22:56 Lage: Tony?

01-00:22:57 Savage: Yeah.

01-00:22:58 Lage: And did the foundation adapt to that? They weren't an organization that had been consumer driven.

01-00:23:06 Savage: You know, when you have the most prominent spokesperson for the cause— they adapted to it in that they enormously were indebted to him, not only for the fact that he was the face of epilepsy in the United States Congress but raised millions of dollars for them. That doesn’t mean that the average affiliate at the grass-roots level totally transformed and became advocates for it.

01-00:23:43 Lage: Right. So the Epilepsy Foundation is centered here [in Washington, DC] but has affiliates across the country?

01-00:23:52 Savage: Affiliates, yeah, all around the country. And I think over the years they’ve become much more advocacy oriented, and the ADA was probably the first. Now they have advocacy-specific seminars just for advocacy where they bring people here.

01-00:24:09 Lage: Right; well, tell me a little bit about how you first became involved with the ADA and when did it first come to your attention and—.

01-00:24:22 Savage: Well, all the coalition who worked on civil rights issues for people with disabilities were focused on enacting the Civil Rights Restoration Act.

01-00:24:37 Lage: And what was that?

01-00:24:37 Savage: Which would have overturned the Supreme Court’s decision in Grove City College versus Bell [1984], which limited the scope of—I can't recall the specifics, but federal financial assistance under a variety of civil rights laws— Title VI, Title IX, Section 504—and the disability community worked—and Mary Lou and Pat and others are far more eloquent on this topic than I am—it was the first time the disability community worked in coalition effectively with other civil rights groups under the umbrella of the Leadership Conference on Civil Rights, and it was the first time where other civil rights groups began to learn about disability.

I think that passed in 1987 or ’88, and then we worked together on the Fair Housing Act, and that wasn’t an issue of specific importance to people with epilepsy, because there weren't a lot of stories, as I recall, of people with epilepsy being denied access to housing based on the stereotypes about epilepsy or seizures, and we didn’t have many stories at the time with people with epilepsy using wheelchairs who needed accessible housing. Although now people with dual-diagnoses of developmental disabilities who have epilepsy are benefiting from the law. But it was part of the recognition that you work in a coalition and that this was a law that was an important stepping stone to the ADA in that it was the first time that Congress enacted a law that imposed requirements for access in the private sector.

01-00:26:51 Lage: And was there a formal coalition then?

01-00:26:54 Savage: Yeah; well, the Fair Housing Amendments Act was a major housing civil rights bill, and the disability community worked in the context of the Consortium for Citizens with Disabilities civil rights task force. The consortium has been around since 1974, and it’s divided into task forces, and there’s one on civil rights, and we worked in concert with other civil rights coalitions.

01-00:27:31 Lage: So there was sort of a framework available to latch onto?

01-00:27:37 Savage: Yeah.

01-00:27:37 Lage: Did you have freedom of action in your job, or did you have to defend working on the Fair Housing amendment?

01-00:27:49 Savage: You know, I worked for Tony Coelho. [Laughs] There were often times where I was questioned about, why is this important for people with epilepsy, and the concern that we were spending much too much time on coalition work and

not enough time on work that would benefit the foundation or people with epilepsy.

01-00:28:17 Lage: Uh-hm; but you had the—

01-00:28:19 Savage: I mean I think that people in a lot of non-profits face that.

01-00:28:22 Lage: Sure; you were assistant director for Government Affairs. Who was director?

01-00:28:26 Savage: Richard Nugent, who is now a Unitarian minister and focused on health insurance and healthcare.

01-00:28:33 Lage: And did he get involved in this or did he leave this to you and—?

01-00:28:37 Savage: Well, I did the ADA; yeah, you know our work was segmented by issues.

01-00:28:44 Lage: And what were his issues?

01-00:28:47 Savage: Research, healthcare, which are huge issues—employment, more programmatic.

01-00:29:01 Lage: Okay; so let’s see, we were talking about—

01-00:29:05 Savage: And then Julie Ward was there who is kind of our—

01-00:29:09 Lage: She was at the Epilepsy Foundation too?

01-00:29:11 Savage: Yeah; we hired her in ’86 and not as a lobbyist; I can't remember what her title was but maybe she was a junior—I can't remember her title. She works here now [The Arc and UCP Public Policy Collaboration], but she’s not here now.

01-00:29:22 Lage: I saw her name tag there when I came in—so how do we get from the Fair Housing Amendment Act to ADA? When did you first hear about the ADA?

01-00:29:35 Savage: Well the Fair Housing Amendment Act passed in ’88, and the ADA was developed by the National Council on Disability as a result of their work towards independence and town meetings they held.

01-00:29:50 Lage: And was this group following that—following the progress of the NCD?

01-00:29:56 Savage: No, that’s—you know, the Council had no legislative expertise and came up with the proposal, and I don’t think that’s appropriate. You know, when you work in Washington you’re aware of what’s going on.

01-00:30:23 Lage: But it wasn’t an effort that was integrated into what your consortium was doing?

01-00:30:29 Savage: No, no; and they developed this bill—Bob Burgdorf wrote it, who is now a lawyer. And we called it—it was introduced in 1988 and Tony was the lead sponsor in the House, and it was introduced as a vehicle for discussion—and we called it the Flatten the World Bill. It was widely—you know, it had no potential for enactment.

01-00:31:03 Lage: I don’t get that—Flatten the World Bill.

01-00:31:05 Savage: Well, it required for example that the barrier removal requirements for existing buildings were significant, and a barbershop would have had to install an elevator to a second floor—it was just woefully unrealistic.

01-00:31:23 Lage: So those of you who had been on the lobbying scene knew better what would work?

01-00:31:28 Savage: Sure, but what was compelling about it was that this council that was appointed by President Reagan of very conservative Republicans, who had done all this investigation in all these town meetings believed that the problem of discrimination and exclusion and segregation was so significant that it demanded radical solutions and so they endorsed this radical bill. So what we did initially, a number of us in the consortium did this co-sponsor drive. The Congress in 1988 was radically different than what it is today; it was much more liberal, and I think we got a hundred members of the House to co- sponsor that 1988 version and about twenty-five members of the Senate approximately—I don’t remember, and there were some Republicans but mostly Democrat, but the Congress was Democratic.

01-00:32:50 Lage: But it was [Lowell] Weicker in the Senate who was the—

01-00:32:52 Savage: Yeah; but Weicker was a very—not a conservative Republican.

01-00:32:57 Lage: And was Coelho instrumental in getting these co-sponsors, or did your group—?

01-00:33:05 Savage: Well, we did a lot and he was very well liked and so people wanted to be on his bill. So members—the goal then was to show support, and it was a presidential [election] year, and to have it on the radar screen for the presidential candidates.

01-00:33:28 Lage: And was that bill—the Flatten the World bill—is that the one that was actually sponsored or were there changes made before ’88?

01-00:33:37 Savage: No; that was the bill that was introduced in 1988.

01-00:33:38 Lage: Okay; so that really was—

01-00:33:40 Savage: Yeah; and so there were about a hundred co-sponsors in the House and about twenty-five in the Senate and then President Bush in his acceptance speech at the Republican convention talked about the importance of integrating people into the mainstream, which was significant and that was the first time that a presidential candidate had talked about disability issues. And then following that, in September of ’88 there was a joint hearing between the House and Senate committees that had jurisdiction, the Senate Labor and Human Resources Committee and the House Subcommittee on Special Education.

Tony actually testified as the lead sponsor of the bill and told his story. It was held in this huge room in the Hart Building, and it was the first time that all of the witnesses with the exception of the chair of the President’s Commission on AIDS either had disabilities or were parents of kids with disabilities, and the whole point of the hearing was to educate members of Congress and the public about the extent of disability discrimination.

The other thing that was significant about it—C-Span covered it and what we did was we took the C-Span tape and with Tony’s help, I believe it was the film studio of the Democratic National Committee, we got the tape edited down from four hours to a half an hour, and we used it. We had hundreds reproduced and Justin Dart was very involved in this, in funding it, and it was used to educate people with disabilities about discrimination, because they themselves—you know, when you take it for granted you don’t see barriers; it becomes part of your life; you don’t see it as discrimination. And the point of doing that was we had people write—we called them discrimination diaries, which were their own personal stories about barriers they face, and they were very, very compelling.

01-00:36:11 Lage: And how did that idea develop—first of all, the idea that you would have people with disabilities or their parents testify for the first time—do you remember?

01-00:36:22 Savage: Well, it was—DREDF and others realized that you can't—the whole essence of the disabilities rights movement is people speaking for themselves. You should really get the tape of Tony’s testimony because that was the essence of his message.

01-00:36:45 Lage: Were you there when he gave that testimony or—?

01-00:36:48 Savage: Uh-hm; I mean I’ve heard the story like eighty-five times. It was one of the most compelling renditions though.

01-00:36:55 Lage: Had his colleagues heard the story?

01-00:36:59 Savage: Yeah, I’m sure. You ought to ask him when you talk to him about that hearing because the gestalt of that hearing was very different. The room was filled with people with disabilities, and—I mean I’d be interested in what he says about it. I mean the way he conveyed it there was different—you know, you get vibes from the audience that are different from the vibes he probably got when he talked to an audience of non-disabled people.

01-00:37:30 Lage: Or maybe the vibes for this cross-disability audience versus—

01-00:37:34 Savage: Yeah; it would be interesting. You should talk to him about that.

01-00:37:38 Lage: Yeah; I will.

01-00:37:40 Savage: Because I’m sure he remembers it; it was in the Hart Building and in this huge room.

01-00:37:46 Lage: But you must have had quite an impression of it because it’s vivid in your memory.

01-00:37:51 Savage: That hearing?

01-00:37:53 Lage: Yeah; and—

01-00:37:54 Savage: That hearing was, you know, a turning point in the disability lobby.

01-00:38:04 Lage: And just say why it was a turning point.

01-00:38:07 Savage: Well, I mean historically you’d have organizations who’d had, you know, either their executive directors or their non-disabled board members talking about what people with disabilities needed.

01-00:38:20 Lage: Right.

01-00:38:20 Savage: So this was a dramatic shift, people speaking for themselves, which for them was very empowering, and you should ask Tony about this as well; it’s the first time that members of Congress heard directly from people with disabilities.

01-00:38:40 Lage: It’s interesting to me, as I’ve told you before we went on the tape, that the mother project of this is about the independent living movement, so the story we’ve heard from the beginning is people speaking for themselves as being the core of the disability rights movement, but this seems to be a point where—

01-00:38:58 Savage: Well it’s the same—I mean the independent living movement was an integral part of the ADA.

01-00:39:01 Lage: Right; I know, I know but I mean this seems to be a point where that aspect— the speak-for-themselves people came to the fore on the national legislative scene.

01-00:39:16 Savage: Yeah; it was just kind of a natural, it was inevitable that that would happen.

01-00:39:28 Lage: Was there feedback to the Epilepsy Foundation from this? Did these experiences change how they thought about advocacy or their roles?

01-00:39:39 Savage: Well, I think the one person who is responsible for transforming the Epilepsy Foundation’s view of advocacy is Tony Coelho. So, you know people really— and it’s not only because of the role he played in Congress—because the commitment he made to people with epilepsy by traveling and talking to them. He spent a lot of time, and I believe probably still does, counseling people and that’s a role that they’re lucky to have.

01-00:40:24 Lage: Okay; well let’s talk about what happened next in terms of how the legislation was changed and what—.

01-00:40:34 Savage: Well, what happened in 1989 is that it was rewritten to be much more reasonable and was reintroduced in the spring, and then we went around and got co-sponsors, and our basic message was if you were on this bill before this new version is far more reasonable so there’s no reason for you not to be on it again. And that was really—I believe—I don’t remember exactly—I think it was early spring and then he [Coelho] resigned from Congress in June.

01-00:41:15 Lage: Was that a blow or had you seen it coming or—?

01-00:41:20 Savage: I think it was fairly sudden but I think a lot of people in Congress—Steny Hoyer who took over for him was a terrific legislator and really had skills that Tony [didn’t have]—as a lawyer—Tony wasn’t a lawyer, and they just presented different skills. And Tony was still very involved, having a credible relationship with members, and was able to do a lot behind the scenes.

01-00:42:04 Lage: When you talk about a more reasonable bill, at some point health insurance, the idea of health insurance was dropped. Was that earlier on or was that in this re-write?

01-00:42:15 Savage: No; that was from the beginning when Lowell Weicker people realized what—you know, Hartford, Connecticut was dominated by health insurance.

01-00:42:21 Lage: And Lowell Weicker was from Connecticut. Now, since that was a big issue in the epilepsy world were they upset that that was dropped or—?

01-00:42:35 Savage: You have to look at reality. It was not realistic that this was going to solve all the problems that people with epilepsy faced.

01-00:42:46 Lage: Right.

01-00:42:48 Savage: Part of politics is, you know, you have to—those of us who believe in incremental change think that it’s important to get what you came for. And that would have been a total—it was like a non-starter.

01-00:43:06 Lage: Right; so that was not controversial? Dropping health insurance—was it a controversial—

01-00:43:15 Savage: Well, the Epilepsy Foundation or people with epilepsy—I don’t mean to be flip but they didn’t have the grass-roots wherewithal to turn around—the insurance lobby is, you know, the most powerful lobby in this country.

01-00:43:28 Lage: Did the NCD resent it being weakened, or did they also realize—?

01-00:43:33 Savage: Whether they resent it or not—see, this is where I get kind of crass. I’m a realist and a pragmatist in part because that’s how I function as a disabled person, and whether they resented it or they didn’t, it doesn’t matter; you know, it’s like reality. Your chief sponsor is from Hartford, Connecticut, he’s beholden to the insurance company for legitimate reasons, and that’s—you know, it wasn’t going to happen. It was just that’s the reality of life; whether they resent it I don’t know. The bill was ambitious as it was, even apart from—very ambitious, and the whole reason it passed is because it didn’t get any press scrutiny because people thought it was like Alice in Wonderland—it would never pass.

01-00:44:20 Lage: That’s interesting. It wasn’t seen as a bill that would go through; is that—?

01-00:44:24 Savage: Well, because it was so revolutionary in so many ways.

01-00:44:28 Lage: Now why did Bush endorse it—the first Bush?

01-00:44:33 Savage: Well, Tony was really very instrumental in that.

01-00:44:38 Lage: And here he is a Democrat.

01-00:44:41 Savage: Yeah; but I think—I mean you should talk to him about that. Well, Boyden Gray—there were a lot of people who were very involved. Evan Kemp, who became the chair of the Equal Employment Opportunity Commission and was a quadriplegic, was very close to Bush’s counsel, Boyden Gray, socially, and Evan really understood that discrimination, especially in employment and access, was a barrier that kept people dependent. You know, independent living and the whole essence of the disability rights movement is very consistent with Republican philosophy.

01-00:45:28 Lage: Equal opportunity and—?

01-00:45:31 Savage: Yeah; working and becoming tax-paying citizens instead of dependent on government programs.

01-00:45:36 Lage: So it wasn’t hard to talk to Republicans about this?

01-00:45:39 Savage: No; I mean, the other thing about the ADA, unlike what we face today is that, with the exception of requirements for enforcement, it was not a drain on the federal budget because the financial obligations were all on state or local government and private businesses. At the time it just wasn’t—given that the stories were so egregious and you know the ADA was based on two fundamental principles—one that people with disabilities deserved the same civil rights protections that other minorities enjoyed—that it makes no sense for a person with epilepsy who has a seizure in a coffee shop to be thrown out of the coffee shop because of his disability and an African American because is protected by the Civil Rights Act of 1964 to have rights, so there was that— that people with disabilities they should have the same civil rights protection, no more and no less than other minorities enjoy.

And then the parallel message was that the point we just discussed that society benefits, all of society benefits, when people are independent and have the ability to join the social and economic mainstream, and can live, work, and play side-by-side their non-disabled peers and be taxpaying citizens rather than dependent on federal or state or local benefit programs. So that was the essential message, and that’s a very difficult message to oppose. So the business groups who had real concerns about the bill and the obligations and burdens it would impose on business; they called themselves the Disability Rights Working Group. It’s not in a business’s best interest even today to oppose people with disabilities; it’s not, because they’re viewed as, historically—you know, Mary Lou and others have told you this—as objects of pity or charity or—so it’s just not—.

01-00:47:58 Lage: So that could be played on in part, at the same time that the group itself rejected that image?

01-00:48:04 Savage: Yeah, I mean it’s just reality; you know, it’s human nature that people feel that way.

01-00:48:13 Lage: Could you talk a little bit about the coalition that developed and how it functioned and particularly the decision that was made to sort of stand together and not give in on particular issues, not omit a subgroup of the community?

01-00:48:32 Savage: Well, it was a large coalition. Pat Wright of DREDF and Ralph Neas of the Leadership Conference for Civil Rights were kind of the leaders and then I— the best most accurate history on the ADA is from a DREDF fundraiser. There is a book that was put together, a program book, that lists everybody and

pictures of people who were involved, and that’s the most accurate description of what happened on the ADA.

01-00:49:08 Lage: More than Jonathan Young’s book [Equality of Opportunity: the Making of the Americans with Disabilities Act (National Council on Disability, 1997)]?

01-00:49:11 Savage: I think Jonathan used it. But it has all the players and the structure of how everything worked. I’m not suggesting that Jonathan’s was inaccurate. And eventually it got to be the point where everyone realized—the beauty of the ADA was that there was something in it for everyone and no one group had the power to pull it off on their own. It was not a funding bill that people were fighting over their own piece of the pie, to get federal money. [Background Noise]

01-00:50:03 Lage: We’re getting some competition here from the drilling but I’m sure it—.

01-00:50:08 Savage: So we made a concerted effort to make people feel like they were involved and had a role to play.

01-00:50:21 Lage: But there were times when—this is skipping way ahead but I’m thinking about the Chapman amendment, where the coalition could have broken down but people stood together. Can you talk about that a little bit? Was this an agreement—?

01-00:50:41 Savage: No, I think it was a recognition that you know, the one thing about discrimination is that it’s an experience that all people with disabilities share, and it doesn’t matter how the discrimination is manifested, whether it’s in the context of HIV or—and I think the one thing about the ADA that was most impressive is that people stood up for each other based on their share of experience of discrimination. Way before the Chapman Amendment there were efforts to exclude people with HIV or mental illness, and the folks who beat back those amendments were not the HIV community or mental health community. It was people—I did a lot of lobbying visits with people from Paralyzed Veterans of America—quadriplegics and—who talked about the kind of discrimination that veterans faced when they came back from World War I or World War II, whether it was either attitudinal or in architecture, and you know, they were incredibly eloquent about how discrimination is discrimination and it’s just wrong. And members of Congress responded to that, and that was what saved, you know, gave protections to people with HIV and other less fashionable or popular disabilities. And the same thing happened with the Chapman amendment. It was just an issue of conscience, and it wasn’t the AIDS groups; it was people like Bob Williams, who had cerebral palsy, who was incredibly eloquent talking about the experiences he

had, in a meeting with Boyden Gray at the White House, and you know, there is no comeback to that.

There wasn’t—you know, once people speak their [conscience], once people—I don’t even know if it was a conscious decision that we’re all going to stick together, but once people articulate a compelling message about why this is wrong it’s very difficult to articulate a message that conflicts with that. I mean because it’s an issue of morality; it’s not an issue—

01-00:53:09 Lage: Yeah; but the extraordinary thing that your story takes for granted is that the Paralyzed Veterans would see the correspondence with the HIV—

01-00:53:21 Savage: Well, the lobbyists did; I don’t know if their boards did. I mean a lot of people did a lot of gutsy things, which if their boards knew about it they probably would have been fired.

01-00:53:28 Lage: Oh interesting. [Laughs] Can you talk more about that? That to me seems like—

01-00:53:35 Savage: I mean, I don’t know because I don’t know what they told their boards. You know, I had the protection of Tony Coelho; I don’t know what other people had.

01-00:53:40 Lage: Did you report back to your board on the course of what was going on and—?

01-00:53:47 Savage: Well, we had a committee.

01-00:53:48 Lage: How did that structure work?

01-00:53:50 Savage: Well, everybody has their boards and their committees, and their committees meet, and I think Government Affairs Committee or whatever, the Public Policy Committee, and on the Epilepsy board it was either Tony—I think he probably sent a staff person, and the foundation looked up to him.

01-00:54:08 Lage: So would the board committee be like volunteers for the [foundation]?

01-00:54:13 Savage: Yeah; the committees were members of the board.

01-00:54:16 Lage: And would they traditionally be doctors and—?

01-00:54:19 Savage: Some were doctors, and some were employment program people, a couple of people with epilepsy.

01-00:54:28 Lage: So did you not have to explain what you were doing? You kind of left that to Tony’s staff person, or was there—?

01-00:54:38 Savage: You know, a lot of things you explain—the reality of Washington is you don’t explain what’s going on behind the scenes. I mean, there’s a public message and there’s what’s actually happening. I know for academics it’s hard; you know, you just don’t—you know, you report as necessary.

01-00:54:55 Lage: So you’re saying it was actually this group of the lobbyists themselves, who represented the various organizations, but it took on a life of its own?

01-00:55:07 Savage: I think that’s an overstatement. You come up with a problem like an amendment that excludes people with HIV, and you get a letter that groups can sign onto, and the reality is you get—the way you get a coalition letter is you get a couple of mainstream groups who have conservative boards, and if they agree to it then it’s easier to get other groups to sign on; it gives you cover, and you know, that’s how you form a cohesive message from a cross- section of the disability community. I mean that’s the reality of how it happens.

01-00:55:51 Lage: Yeah; was there a lead conservative group that was able to get their board to agree?

01-00:55:57 Savage: Well, I don’t remember how we did; The Arc, Paul Marchand of the The Arc, was like the dean of the disability community, and he was enormously well respected, and you know if you got the The Arc and United Cerebral Palsy and Epilepsy and PVA or Easter Seals on a letter then others would—yeah.

01-00:56:20 Lage: Others would come; hmm.

01-00:56:24 Savage: So—

01-00:56:26 Lage: Well, that seems like one of the extraordinary things to me and maybe— [Laughs]—

01-00:56:31 Savage: I mean, we take it for granted because we do it everyday; that’s how business is done. I think a lot of things were probably said in lobbying meetings to staff that were never put in writing but were very compelling.01-00:56:46

Lage: Now give me an example.

01-00:56:48 Savage: Well, what I just told you about people telling stories of discrimination, and conservative members of some of these groups, who knows whether they would have shared the view that people with HIV should be covered, you know. Then the other thing on the HIV issue was there was a lot of cover because the President’s Commission on AIDS supported this bill, so you have a very conservative president—their own commission recognizing that discrimination was a huge problem, and so that gave cover to the conservative groups. You know, it was all—

01-00:57:24 Lage: Many things came together.

01-00:57:25 Savage: Yeah.

01-00:57:29 Lage: Tell me more about the lobbying teams. Did you make a conscious decision to get people with different disabilities coming together to visit—?

01-00:57:42 Savage: We tried to, and we tried to integrate people who were in from out of town. A lot of people came in from out of town, and one of the things we tried to do was really make them think that they were—not make them think, but incorporate them in as part of the process. I mean we had these meetings on Mondays in the Methodist Building on the Hill, and everybody was welcome even if you’re in from out of town for just the day, and we used to spend a lot of time meeting with people in the cafeterias of the House and Senate to brief them on what was going on so that there was a cohesive effort.

01-00:58:24 Lage: And would they be then deputized to go—?

01-00:58:27 Savage: Well, they had their own—not that we were controlling at all; I mean, they had their own visits, and people from Texas would visit the Texas delegation and—.

01-00:58:37 Lage: But you kind of brought them up to date on the message and the issues and—?

01-00:58:42 Savage: Yeah; so that they would, we would all—I mean there was an effort to try to speak with one voice; whether it was successful is, you know, who knows.

01-00:58:51 Lage: Now, you mentioned how different it was before the days of the Internet. Would you talk more about that?

01-00:59:00 Savage: Well, in those days, I remember members telling me and staff saying that if they got thirty letters on an issue that was incredibly overwhelming, and that would be sufficient to get them on a bill. And today I don’t think that is nearly sufficient.

The other thing is that in those days one of the reasons the ADA passed the way it did was because a lot of interest groups just did not pay attention to it. State and local government entities didn’t pay—you know, the major group that was against it was Greyhound, and it was hard for other groups to be against it because the Bush administration was for it, and it was bipartisan.

01-00:59:53 Lage: Did it fly under the radar of some of these groups?

01-00:59:58 Savage: You’d have to ask them; I mean, but one of the reasons that we were fortunate that it didn’t—we didn’t seek out press attention.

01-01:00:06 Lage: And that was a conscious decision?

01-01:00:10 Savage: I don’t recall whether it was conscious or we just never—I mean in retrospect it was the right decision; the law never would have been enacted. I mean there’s a divergence of opinion on this; some people think there would have been a lot less backlash if the public was educated on it and if there was a lot more press before it was enacted, but it would have been a totally different bill.

01-01:00:38 Lage: Uh-hm; what kinds of things would you have had to accommodate to—?

01-01:00:42 Savage: Barrier removal requirements would have been far less comprehensive, if there had been press attention. So you know other—

01-01:00:54 Lage: People would have realized the potential costs and—?

01-01:01:00 Savage: Uh-hm.

01-01:01:02 Lage: Surprising that the Congress themselves, members of Congress didn’t think about that.

01-01:01:07 Savage: Well, see, at the time there was no real cost data. And we talked about it and focused on new construction, which is really cost effective, and on readily achievable barrier removal, talking about how you could install a paper cup dispenser at a water fountain or a one-step ramp. You know, it seemed reasonable, and that it was. And the degree of isolation was so significant that it seemed a reasonable solution.

01-01:01:48 Lage: That leadership video interview we talked about that you took part in—you don’t seem to remember it too well, the group interview. [Interview with Liz Savage, Bob Williams, Katy Beh Neas, Tom Sheridan, Curt Decker for the Disability Rights Leadership Video Collection, available in the Bancroft Library.]

01-01:01:57 Savage: No; I remember it—I don’t remember what we said but I remember doing it.

01-01:02:01 Lage: Well, one thing, they described you as being constantly on the phone to the grass roots.

01-01:02:06 Savage: Me?

01-01:02:09 Lage: Yeah.

01-01:02:10 Savage: I spent a lot of time, yeah.

01-01:02:13 Lage: And what were you doing on the phone to the grass roots?

01-01:02:19 Savage: A lot of people had fabulous ideas that I didn’t originate, but I was kind of like a conduit. The whole idea of the discrimination diaries was from a guy in ADAPT named Mark Johnson. And I would talk to them about—that was before the Internet so you spent a lot of time on the phone, which was probably better; I’m a big believer in not documenting—I mean, I think the danger of email is that too many people write down things that they should never write down. So, we’d talk, and I’d give them updates, and it was a part of involving people in the process.

01-01:03:01 Lage: But what—

01-01:03:04 Savage: Historically in the disability community, and it’s still a problem today to some extent, is the schism between the Washington lobbyists and the grass roots, and it was really important to make people in the grass roots feel that they were a part of it, because they were, and they were really doing a lot of the work that bore fruit and votes. It wasn’t the lobbyists; I mean it was a combination of a lot of things, but they played a really key role.

01-01:03:37 Lage: Now we use this term “the grass roots”; who were the grass roots that you worked with?

01-01:03:39 Savage: No, I mean I did the lobbying. Marilyn Golden from DREDF set up this regional structure; we had like ten people, I think, from around the country who did a lot of grass roots stuff, conveyed information.

01-01:03:55 Lage: Tell me about the role of people with epilepsy in this lobbying effort.

01-01:04:03 Savage: Well, we worked with the affiliates and tried to generate stories of people with epilepsy and tried to get them to share their stories with members of Congress.

01-01:04:16 Lage: To do the discrimination diaries?

01-01:04:19 Savage: Uh-hm.

01-01:04:19 Lage: And did that work?

01-01:04:21 Savage: Well, the stories are very compelling.

01-01:04:24 Lage: Had people with epilepsy traditionally seen themselves as part of a civil rights and broader disability rights movement?

01-01:04:36 Savage: Probably not; you’d have to ask them. The ADA was the first time where I think people with epilepsy—you know at the grass roots level I don’t think they necessarily got involved with independent living. They didn’t—you should really talk to people with epilepsy, because when you have a hidden disability it’s really an issue of choice of whether you want to disclose and become involved with people with disabilities who view their disability in a different light, for understandable reasons.

01-01:05:16 Lage: Right; so there was some of that?

01-01:05:21 Savage: Yeah; I mean you’d really have to—. Tony would be a much better person to speak on that.

01-01:05:30 Lage: Yes, I will bring all this up with him. I hope to talk with him again before long. You talked about Tony and how important he was even after he left Congress; can you talk more about what you know about what he did after he left Congress?

01-01:05:46 Savage: Well, he had a lot of relationships with key members. You know the House was still—he was very close to Steny Hoyer, and he was very close to other committee chairmen; the House was still controlled by Democrats. Congressman Mineta, who was the chair of the Transportation Committee, he was very close to and had done a lot for him on the Japanese reparations bill, and Congressman Mineta was indebted to him.

01-01:06:14 Lage: So this is one of the chits that he was—?

01-01:06:16 Savage: Oh yeah; he—yeah.

01-01:06:20 Lage: [Laughs] Anything else you’d suggest I ask him specifically about?

01-01:06:34 Savage: Well, one of the most brilliant things he did that nobody knows about—and this should definitely not be disclosed for a long time—is when, the day he left Congress, he did interviews with the press, and he had talked to President Bush, and in his interview with the Washington Post, he told the Washington Post that he had thanked the president for continuing to support the ADA. And at the point there had been no official articulation of the president supporting the ADA. So it was really—it was a brilliant move that definitely boxed them in. You know, they wouldn’t acknowledge that.

01-01:07:24 Lage: Oh that’s very interesting.

01-01:07:26 Savage: And I don’t even know if he did it consciously; he probably did.

01-01:07:30 Lage: But Bush had come out at the Republican Convention and—

01-01:07:33 Savage: Yeah, but not in specifics of a bill, on the issue of this vanilla concept of integrating people into the mainstream, which is far different than supporting a specific piece of legislation.

01-01:07:47 Lage: Well, that’s very interesting. Did he continue to work with the Bush White House, do you think?

01-01:07:52 Savage: Well, he’s close to many of the Bush people because his—but this was after the ADA; one of his staff people—this was several years I think after the ADA—Bobby Koch married Dora Bush [in 1992], and one of Tony’s staff people was responsible for introducing them. I think that was way after the ADA; I don’t remember.

01-01:08:26 Lage: Now which Bush is Dora Bush?

01-01:08:30 Savage: Forty-one’s daughter—W’s sister.

01-01:08:35 Lage: Hmm; you don’t hear about her in the news much.

01-01:08:39 Savage: Uh-um.

01-01:08:39 Lage: She married a Democrat. Well, I feel like we really kind of skipped over the roots of the ADA, but it’s been documented as you say in a number of interviews. Is there anything in particular in relation to people with epilepsy that we should say—the role of the Epilepsy Foundation or of epilepsy advocacy?

01-01:09:09 Savage: Well, the foundation had resources, and what’s good about using them was— we did a lot of the structural work for the whole coalition that wasn’t really related to people with epilepsy. I had an assistant, Donna Lederer [?], who now is married, Donna Meltzer, and works at the Association of the University Centers on Disability, who did a lot of interaction with the grass roots. We sent out a lot of mailings, and the Epilepsy Foundation really committed a lot of resources, for which they should be commended, and not necessarily just to their affiliates but to the whole coalition.

01-01:09:56 Lage: So they helped fund some of the—

01-01:09:59 Savage: Oh, a lot, yeah—it was thousands of dollars in phone calls and long distance charges and mailings and yeah, absolutely.

01-01:10:07 Lage: Who were some of the other people that worked with you as part of the foundation staff? You mentioned a few names and I didn’t get them.

01-01:10:14 Savage: Richard Nugent in government affairs; Bill Macklin was their executive director.

01-01:10:21 Lage: And was he supportive as executive director?

01-01:10:27 Savage: Uh-hm; yeah. I think he had concerns about—I think in retrospect they viewed it as a good thing for them to do. At the time they were, like other— you know, they stepped up to the plate and committed a lot of financial resources.

01-01:10:54 Lage: Was there ever a time when you were reined in or asked to pullback or—?

01-01:11:01 Savage: I worked for Tony Coelho.

01-01:11:03 Lage: Okay; that’s a good point. Okay, now when it was all over you didn’t stay too much longer at the Epilepsy Foundation, it seems. Did—?

01-01:11:17 Savage: Well, after coordinating the lobbying effort on the ADA it was kind of hard to think about going back and doing lobbying on smaller bills. And Mary Lou [Breslin] asked—DREDF was starting a training program, and she presented me with this great opportunity.

01-01:11:37 Lage: And what was the training program on?

01-01:11:39 Savage: On the ADA. DREDF had a history of being the leader in training people with disabilities and covered entities on Section 504, which is really how—you know, the success of 504 was really based on the recognition that people really had to understand their rights.

01-01:12:00 Lage: Right; and that seems to have been important in the road to ADA, that kind of training.

01-01:12:05 Savage: Oh yeah, it developed a lot of grass-roots leaders and the whole infrastructure.

01-01:12:09 Lage: Hold on one minute; I want to—

[End Audiofile 1]

[Begin Audiofile 2]

02-00:00:00 Lage: Okay, we’re back on, with some roar in the background. We were talking about post-ADA and your becoming—what, you became national training director, right, for DREDF?

02-00:00:25 Savage: Uh-hm.

02-00:00:28 Lage: What did that involve?

02-00:00:30 Savage: That involved working in collaboration with Mary Lou and others at DREDF and developing training programs on the ADA for people with disabilities, and we did a lot of public speaking. Some of the trainings were five-day trainings. Some of them were funded by NIDRR [National Institute for Disability Rehabilitation Research], others by a joint project. DREDF had a huge contract with the Department of Justice and the EOC to train 400 trainers who were then responsible for training 400 people with disabilities each, and we did these trainings in like five-day sessions. We did different types of trainings. We did five-day sessions with people; then we did two-day sessions and different, depending on people’s needs.

02-00:01:18 Lage: Was that part of the legislation that funding or—?

02-00:01:21 Savage: No; there is part of the legislation that required the government agencies with enforcement responsibilities to do technical assistance and training for people with disabilities and covered entities on their rights and responsibilities, but it didn’t appropriate funding. Civil rights legislation doesn’t appropriate funding.

02-00:01:48 Lage: So that had to be—

02-00:01:51 Savage: Well, they did it within their existing budgets, and subsequently agencies, the Justice Department and the Department of Transportation, incorporated needs for funding for technical assistance and training in their budgets that were submitted in the early nineties.

02-00:02:14 Lage: Was that satisfying work? It seems like a long way from Congress.

02-00:02:17 Savage: It was very satisfying work because, you know, the law is just words on a piece of paper. It was really about making people understand and trying to—

the ADA is really in many respects self-implementing legislation; you really need to know your rights; especially for people with epilepsy in the employment context you really need to know what you’re entitled to and how an interview should legally be conducted before you can make judgments about whether you want to disclose and your need to seek accommodations. And for people with mobility impairments in the public accommodations context, for example, the law was not going to implement itself. It really required people to educate businesses and try to seek volunteer compliance.

02-00:03:22 Lage: So was any of the training with the non-disabled community, the business community?

02-00:03:28 Savage: Yeah, we did a lot with the Better Business Bureau, and the DREDF staff really developed a lot of expertise and because of the work that DREDF had done in leading the coalition was viewed as the experts, and so we did a lot of speeches for state and local government entities, the League of Cities and—.

02-00:03:56 Lage: Is there where you saw these entities begin to see what was involved with the ADA?

02-00:04:03 Savage: Yeah. Well, in the development of the regulations they—you know they’re—

02-00:04:10 Lage: They got more interested?

02-00:04:11 Savage: Well, yeah; you know they had lawyers who submitted comments and—yeah. And I think as—the unfortunate thing about the ADA was after it passed, a whole consulting business developed where people preyed on the fears of businesses and local government entities, and in my view in very slimy ways, and did trainings and really spewed a lot of misinformation about what the law requires and the financial obligations of businesses and really manipulated people’s fears about litigation, and that was the beginning of the backlash.

02-00:05:08 Lage: I see, now what kinds of people were doing that—not part of the disability community?

02-00:05:12 Savage: No; but some people with disabilities were co-opted by these scam artists who—in my view they were scam artists. In other people’s views, you know this is America and that’s a mark of success when legislation passes that demands a cottage industry to address it.

02-00:05:33 Lage: So they raised the fears among restaurant owners and transportation providers and the—?

02-00:05:39 Savage: Yeah, unless you buy our product or unless you come to our training you’re going to be—yeah. Well, there was a lot—and the Better Business Bureau, worked with them because of their reputation, to really fight a lot of that.

02-00:05:55 Lage: So what different message were you giving from these—?

02-00:05:58 Savage: Well, we were telling people what the law required—not what they feared it would require. Because the law in essence is very flexible, and the scam artists were taking worst-case scenarios that were never intended to be required under the law and making it reality for people, making people think that they would have to expend enormous sums of money to comply, rather than what the law really required, [which] was flexible approaches looking at the resources of the business, the economy. With respect to barrier removal in existing facilities, it’s not required, you know—it was based on looking at the resources available to a business.

02-00:06:56 Lage: That was actually written into the law?

02-00:06:59 Savage: Yeah; that with respect to barrier removal in existing facilities, you’re supposed to do what’s readily achievable and what’s readily achievable for a small restaurant is vastly different than what’s readily achievable for a chain like Starbuck’s that’s all corporately owned.

02-00:07:15 Lage: Or McDonald’s.

02-00:07:17 Savage: Yeah, but a lot of—in an effort to make money this cottage industry of scam artists ignored that.

02-00:07:25 Lage: Do some of the cottage industry go under the rubric of disability advocacy or legal—?

02-00:07:34 Savage: Well, some of them hired disabled people to give them credibility.

02-00:07:39 Lage: So you see that as part of the backlash?

02-00:07:42 Savage: Oh yeah; that was the worst thing that happened to the law.

02-00:07:45 Lage: Well, that’s too bad.

02-00:07:46 Savage: And a lot of lawyers in the private bar took cases which were horrible cases and were never intended to be brought, and the lawyers in my view committed malpractice by not even reading the basic regulations and the text. Half—a lot of the cases—I wouldn’t want to quantify—that were brought, if the lawyer had ever read the Technical Assistance Manual they would have realized it was a lousy case. And I mean, you know, totally irresponsible and unethical.

02-00:08:15 Lage: But did those cases succeed?

02-00:08:17 Savage: No.

02-00:08:19 Lage: But they got publicity?

02-00:08:21 Savage: Yeah.

02-00:08:22 Lage: And cost people money to defend themselves?

02-00:08:24 Savage: Right, right, which is the problem. It’s unfortunate but it’s America, what can I say?

02-00:08:33 Lage: That’s right. [Laughs] As you said before we turned this on—

02-00:08:35 Savage: I have like ten more minutes; I’m sorry.

02-00:08:37 Lage: Okay; let’s go on. Then you went to the Clinton Administration.

02-00:08:42 Savage: Uh-hm.

02-00:08:44 Lage: Tell me about that. We’ll just briefly talk about what you’ve done since ADA and then we’ll—.

02-00:08:48 Savage: Yeah; I was enormously fortunate in that I started as a special assistant to the assistant attorney general for civil rights, Deval Patrick, and then eventually was promoted to the position of counsel to the assistant attorney general for civil rights at the Justice Department. The ADA was new, and the department had a lot of emphasis on building an enforcement program that was

comprehensive and that incorporated both public education and technical assistance with litigation, and I worked on putting that together. I also had the opportunity of working with Janet Reno. I became her disability person, and she was very involved from the outset and very interested in ADA implementation, because she saw it as a huge opportunity, a new law that had potential to dramatically affect social change in this country.

02-00:09:56 Lage: Hmm; so she got it, sort of, from the beginning? I mean, she understood the importance?

02-00:10:01 Savage: Yeah; she had had a lot of experience in working with the disability community in Miami when she was Dade County prosecutor. And Florida had some of the most progressive disability laws—barrier removal laws. She saw the potential of this and the fact that the Justice Department was the lead agency in charge of enforcement, so that coupled with her ability to use the bully pulpit—one of the first things we did is she taped a public service announcement with a group of people with disabilities about the law that was on both radio and TV. Which was, for the Attorney General saying this is the law, it was, you know—and she put a lot of resources, the Disability Rights Section of the Justice Department is now either the largest or the second largest section in the Civil Rights Division.

02-00:11:02 Lage: And that’s a result of her decisions?

02-00:11:07 Savage: Well, it was collectively; I mean people within the department knew that this was important and the decision that—a variety of things, but certainly she deserves a lot of credit for that, as do Deval Patrick and Bill Lee, who were the assistant attorney generals of the Civil Rights Division.

02-00:11:25 Lage: And John Wodatch, was he also—?

02-00:11:26 Savage: He’s a career—he’s incredible; he is really the brains behind disability law in this country.

02-00:11:34 Lage: Tell me more about that. He was—

02-00:11:38 Savage: Yeah; he started at HEW and wrote the 504 regs in 1977, and he is now the chief, has been the chief of the Disability Rights Section since after the ADA. He was the one who negotiated the law on behalf of the Bush Administration, and he was responsible for getting the regs written and overseeing enforcement. But career staff respond to the leader—you know he worked really closely with Janet Reno. She has enormous respect for him.

02-00:12:19 Lage: Uh-hm; and did you work under him or—?

02-00:12:22

Savage: No, I worked for Deval Patrick. I worked really closely with him, but the way it works is the political leadership, non-career staff, direct the career staff.

02-00:12:35 Lage: I see; hmm even though—

02-00:12:38 Savage: Now, with him, the Clinton Administration was much more collegial; it wasn’t hierarchical, and especially with people like John—everyone had enormous respect for him.

02-00:12:55 Lage: Probably not that many people get to be as active as you were in making a law happen and then being on the enforcement side.

02-00:13:03 Savage: Yeah; I was enormously fortunate. I don’t think many people—you know, I had the opportunity of working on this from when the law was words and a theory, to seeing it enacted, and then educating people about what was required, and then really being an integral part of directing the enforcement at the inception. And it was an enormous privilege to be able to do that. I mean I had experiences at the Justice Department; I can remember reviewing amicus briefs; I would be responsible for reading all briefs that we would submit and some of the legislative history that we quoted were statements that I had written for members of Congress.

02-00:13:56 Lage: That’s extraordinary.

02-00:13:57 Savage: Yeah.

02-00:13:58 Lage: Was there anything that you were dissatisfied about the level of enforcement or the priorities that the Department of Justice set?

02-00:14:07 Savage: Well, I think in retrospect you always have regrets that you would do things differently because no one is perfect and everyone is a human being and circumstances are different and change and—.

02-00:14:17 Lage: But were there political things within the Clinton Administration that you were objecting to, or felt objection to?

02-00:14:24 Savage: No, the Clinton Administration was—you know, if we had our druthers with the benefit of 20/20 hindsight we would have done certain things differently but there was an incredible—. In the Supreme Court, for example, the administration supported, was on the side of people with disabilities in every single case that came before the court. And in the appellate courts as well; I mean there were a couple of cases that we didn’t participate in, but it was a very aggressive effort to try to shape the law.

02-00:14:57 Lage: Did the Justice Department take on cases of individual—?

02-00:15:03 Savage: Yeah; we did. The department can investigate complaints and then, if there’s no resolution via settlement or consent decree, file lawsuits. And we filed a number of lawsuits that had dramatic change, one requiring the State of Hawaii to totally revise its policy on allowing guide dogs into the state and leaving the state, a lot on barrier removal, which really with respect to new construction opened new frontiers. There’s a huge boom in stadium construction, and one of the issues that the Justice Department took the lead on was insuring that people would have line of sight over standing spectators in stadiums, so that in new stadiums people who use wheelchairs could have the same line of vision that other people have, which may seem like a minor issue but to them was pretty critical.

02-00:16:22 Lage: Yeah; absolutely.

02-00:16:23 Savage: There were a variety of issues. We tried to have an enforcement program that was balanced with respect to addressing issues of the various constituencies within the disability community.

02-00:16:37 Lage: The various different disabilities.

02-00:16:40 Savage: Yeah; you know, from the perspective of people with epilepsy I think most of the work was done by the Equal Employment Opportunity Commission.

02-00:16:47 Lage: Because that was really the part that affected them the most, the employment?

02-00:16:51 Savage: Because of employment, they had the main responsibility for employment cases.

02-00:16:58 Lage: Okay, well, what have I missed asking you about?

02-00:17:01 Savage: I think you’ve been pretty—.

02-00:17:04 Lage: I know we could have gone into many more things but given the time is there anything else that you want to put on here, either for the record or not for the record?

02-00:17:15 Savage: No, I think the one thing that’s important is that the ADA, I think for people with epilepsy as well as other disabilities, is it gave them a forum to be much more open about articulating the barriers and the discrimination they’ve faced and it eliminated a lot of the stigma. That’s not to say that the stigma, especially in an employment context, doesn’t exist but it gave people with epilepsy the opportunity to learn that the discrimination and the stigma they face is no different than that other people with disabilities face, and I think if you talk to many people with epilepsy they would say that was in many ways a liberating experience for them.

02-00:18:04 Lage: Uh-hm; so even though they might not have been front and center—

02-00:18:07 Savage: Directly involved—yeah; and one of the positive things about the ADA is that it spawned more of a discussion about addressing disability. You see people with disabilities in advertisements now and more public awareness about people with disabilities, which is not the be all and end all, but there’s been much more focus on people with disabilities and acceptance of people with disabilities as a political force and a constituency than there was before the ADA.

02-00:18:47 Lage: And this has some effect on the hidden disabilities as well?

02-00:18:51 Savage: I think it had to; I mean people with hidden disabilities are much more articulate spokespeople than I am on that issue but yeah. That’s my perception, but I think Tony can speak to that more articulately.

02-00:19:03 Lage: We’ll get him to do so. Thank you very much Liz; I really appreciate it.

02-00:19:07 Savage: Sure.

[End of interview]