A Matter of Dignity

by Andrew Potok

  In the early 1980s, the Disability Rights Education and Defense Fund, Mary Lou's organization, was in a pitched battle with the Reagan administration, which was advocating for major revisions to the regulations of Section 504 of the 1973 Rehabilitation Act. DREDF was sending out press releases, engaged in a major effort to make alliances with the Leadership Conference on Civil Rights. It had trained lobbyists to go around and talk to various members of Congress to try to get them to pay attention. This turned out to be crucial, as Section 504 eventually formed the basis for the Americans with Disabilities Act. It was impossible to see the formation of ADA down the road but the idea was to keep Section 504 alive. DREDF had also made a good connection with the Washington Post.

  In this 1981 deregulation fever of the Reagan administration, Mary Lou, in her wheelchair, waited for a Washington Post reporter who wanted to do a piece on disability issues. The office DREDF was subletting in Washington, D.C., was so tiny that she wondered where the reporter was going to sit.

  “We're in the old cramped office,” Mary Lou says, “and Chuck Babcock comes in. Before he sits down on the corner of one of the desks, we eye each other up and down. I know him from somewhere, I tell myself, and before we get going, we go through our where-are-you-froms. Well, it turns out we're both from Louisville, went to the same high school at the same time and then there's this ‘aha’ moment as we realize that he was one of the group of boys who carried me and my wheelchair up and down three flights of stairs every single day of school. It was a pretty profound moment,” she says, “a little epiphany. His memory of hauling me and my chair gave him a deep, graphic understanding of our disability issues, of why these regulations were so critical. Without our shared experience, he might have written a good piece, but it wouldn't have had that personal component, his very own hands-on experience. In any case, he got it, he really got it. ‘Why didn't we think ofthat then?’ he asked. ‘We were all smart people. What was the matter with all of us?’ Anyway, it was a real parallax view for him, a light bulb that went off in his head. ‘If these regulations had been in place when we were in high school,’ he said, ‘we wouldn't have had to carry you.’ ‘That's the idea,’ I said. ‘There would have been alternatives.’ ‘Yeah,’ he said, ‘like putting your classes on the first floor, not a big-money item.’ ‘And an interesting solution to the problem,’ I said.

  “This of course is the kind of impact that regulations have on people's lives,” she says. “It was very useful to have this story on the front page of the Washington Post and to have it construed as a civil rights issue, rather than in charitable or health or entitlement terms. That was the goal.”

  In terms of legislation, it took a couple of years but, eventually, during the Reagan presidency, the Regulatory Relief Committee was set up to review deregulation and found that the disability regulations were not overly burdensome and kept them in place.

  “I came to the disability movement through the back door,” Mary Lou tells me. “School and family didn't help head me in the right direction. I grew up in urban Kentucky, and after my polio my family had to figure out what to do with me, especially in terms of school. By the time I was ready for high school, I was using a wheelchair. If you needed any kind of accommodation, you were out of luck. Everything was inaccessible everywhere. My parents intuitively understood that home tutoring was the wrong thing for me, so they dredged up this high school in the suburbs, three stories up to the classrooms, no elevator at all. They talked them into letting me go there without any preparation, any real thought.

  “I remember sitting just inside the front doors and the home room teacher gets the principal and they confab out in the hallway, beyond earshot, trying to figure out what to do with me. It's hard to recollect what I was thinking then, what any of them were thinking. I would so much love to get back to that moment, to recall what I thought as all this was happening.”

  She was thirteen, getting to the point when it was important to fit in, important to be out and about. After talking about it, the administration decided that older students would carry her up and down the stairs, wheelchair and all. During all the years she was there, about five minutes before classes, she would truck to that little hallway where her designated carriers, the four biggest boys in school, Chuck Babcock among them, would show up, and with everyone's books on her lap, they would haul her up and down the stairs. “I mean we flew up and down, unsupervised, unthought about, a nightmare of liability. I was terrified,” she says, “but not humiliated I was scared of being dropped, my attitude about all of it muffled, and unexpressed. On top of everything, I had my little girlish crushes on those guys.”

  Another horror of her school days was the lack of an accessible bathroom, which would have meant a door wide enough to get her chair inside. “Nobody thought about it,” she says, “and no one even thought of asking. Honest to God, I was in my thirties before I could figure out what that was all about. I had no insight about it at the time and none of those smart adults even knew how to conceptualize the situation.”

  “A whole day without peeing? How did you do it?”

  “I didn't drink anything for the whole day,” she says. “The upside of it was that I got uncanny control of my bladder as well as getting a pretty good public-school education. The carrying part never got figured out. It really took getting involved with the disability movement to analyze it, to understand it as a response to the dominant social policy at the time. It had a tremendous influence on the way I think about the issues now. At the time, I never even came close to thinking about disability in civil rights terms, in individual rights terms. As a matter of fact, it pushed me the other way.”

  “Pushed you into hating yourself?” I ask.

  “I wanted to squash myself into the ‘I'm like everybody else’ mold. The word accommodation was not in my vocabulary. I was feeling ‘get out of my face, I don't want anything from anyone. I can do it, leave me alone.’ “

  In her Berkeley home office, Mary Lou, who spends most of her time thinking and writing about public policy, relaxes into reminiscing about those early days. “I got polio when I was eleven, almost twelve, and spent a year in rehab. Until then, I was doing everything upper-class kids get to do, playing piano, going to cotillions, all that junk. My father was a wealthy contractor. Home was privileged and racist. Black women helped raise me and became my best friends. Those early relationships got me involved with the civil rights movement at a time when my family's attitudes just about killed me.”

  She went to the Georgia Warm Springs Polio Foundation, which transformed her life. “This was rehab at its best,” she says. “Their position was that you have no reason or excuse for not doing anything you want to do. Their approach was to enlist the family and everyone who cared into a model of cooperation. Philosophically, they wouldn't accept any kind of isolation or segregation. That place was the most influential in establishing in me the notion that I could do whatever I wanted to do. Between the age of twelve and eighteen, I went back there every summer for various rehabilitative fine-tunings.”

  When the Warm Springs staff asked where Mary Lou was going to college, she told them that she'd been accepted by several colleges that couldn't deal with her wheelchair so she had decided on the relatively accessible University of Illinois. The Warm Springs people urged her not to make any decisions based on accessibility. Nevertheless, she took the easier path. “Not many people at that time gripped the revolutionary notion of architectural accessibility,” she says. “The folks at Warm Springs instilled in me the understanding that disability had little to do with whatever the outcome of my life would be. Everyone I know who went there went on to careers and family. All of them learned to support themselves.

  “So Warm Springs, black women and my feelings of ‘I can do it, get out of my face’ in high school gave me the basis for whatever I was able to accomplish. It was a mix of stubbornness and social consciousness. What I really didn't get for a long time, though, and it was there
in front of me, was the connection between my place in the world and my inalienable rights as a citizen. Can you believe it?”

  At college she was with a bunch of people in wheelchairs and was involved in every social issue, including the civil rights of just about everyone on earth except her own. The program at the University of Illinois was developed only for those who weren't severely disabled, those who were seen as capable enough to join the workforce. Students had to do everything for themselves. The only ones who fit that bill were young people with polio. “This made me feel I was the elite,” she says. “Imagine, the disability elite. I had a bad attitude.”

  In this huge but very straight, engineering-oriented university, there were perhaps fifteen radicals, three of whom were disabled. “It was not your basic hotbed of radicalism,” she says. The big political issues were about race. She hung out with political people and tried to understand what the options were. “I hadn't yet formulated the right concepts, the relationships between labor and economics, politics and activism and class. I didn't get it. It took me another ten years to understand the basic concepts in context. Maybe that's a maturation thing, maybe a result of growing up naive and protected. A crippled girl with privileges is not necessarily going to figure this stuff out.”

  All the disabled students were housed on the first floor of a dorm where the one adaptation was the accessibility of the bathrooms. Most of them had nondisabled roommates, primarily because it would have been impossible to have two wheelchairs in one small room. They had to enter buildings through back doors, take a series of three service elevators, find circuitous ways around the largely inaccessible campus. The college provided a lift-equipped bus that ran between all the buildings on a regular schedule, but the hydraulic lifts for the buses had no rails or flaps, no protection of any kind. “Getting ourselves on the platform just right was considered very cool, disability-cool,” she says. “Even when, much later, I got a job helping disabled people find work, my reaction was, ‘What am I doing with all those crips?’ I didn't like it. I still can't believe I felt that way but I did. Until the light went on in my brain.

  “Everybody thinks I'd give anything to not be disabled, but I never think that. Especially because I've been disabled since I was a kid, my entire existence has turned on these influences and relationships.” She chuckles. “If I hadn't been disabled,” she says, “I might have ended up married to a Kentucky dentist, taking Valium, drinking mint juleps, looking out over my sprawling estate. And utterly miserable. How could that begin to compare with the interesting life I have now?”

  Mary Lou teaches at the Graduate School of Business at the University of San Francisco. Her students will go on to work with workmen's compensation, medical rehab, the insurance industry or corporate disability services.

  In 1979, together with a couple of socially concerned lawyers, she co-founded the Disability Rights Education and Defense Fund. “At one time, we thought that empowering people to feel good about themselves could solve all their problems. I believed that for a long time. I don't believe it anymore. That simplistic approach was good twenty years ago but it's all gotten a lot more complicated now.

  “One of the main things DREDF did was to teach people about the new laws, which at the time were Section 504 of the Rehabilitation Act and what was then called the Education of All Handicapped Children Act, the law that guaranteed public education for all kids with disabilities, kids who until then were either out of school or warehoused in segregated programs. We were able to shift understanding from ourselves and our problems to the role that discrimination has played in our lives. It doesn't matter what the medical diagnosis is. It's the same level of isolation and discrimination even for those who have coped with jobs and families. This analysis helped to liberate people. It made people realize that disability is the problem of the guys who design and build the steps, not the problem of the person in a wheelchair for not being able to walk. Once you shift the burden of responsibility to where it should be, it's a revelation.”

  Mary Lou had a hand in all the civil rights issues and legislation of the 1980s that led to the Americans with Disabilities Act, and the paradigm shift she talks about was involved in identifying the ways in which people were prevented from exercising their constitutional civil rights.

  Disability is no longer defined as an insular entity but as it relates to the social, political and economic environment. It is no longer defined by the binary model, not on or off, but as a process that varies depending on what's going on in the culture, the society at large.

  During the period of my conversations with Mary Lou, I was also talking with Chai Feldblum, a lawyer and teacher who was intimately involved in many disability issues of the 1980s and 1990s, including the actual crafting of the Americans with Disabilities Act.

  Often, people who enter disability work are either themselves disabled or have someone close to them who is dealing with these or very similar issues. Mary Lou, in her wheelchair, resisted entering the field until relatively late in her life, while Chai Feldblum was drawn into it in spite of being a nondisabled woman. “For me,” Chai says, “it was my involvement with the AIDS community and my passion for justice.”

  In 1986, when she was a law clerk to Justice Harry Black-mun, the Supreme Court heard the case of Nassau County v. Arline. Until then, the court had heard only two or three other cases under Section 504 of the Rehabilitation Act. The Arline case involved a teacher with tuberculosis who was told she would not be allowed to return to teaching, even though she was no longer contagious. The lower court had ruled that it could not believe that Congress intended to cover people with contagious diseases and thus 504 didn't apply. The Eleventh Circuit reversed that decision and the Supreme Court took it upon itself to decide whether or not the woman was handicapped.

  “As a clerk,” Chai says, “I pulled this case, asking for it specifically for two reasons. One, I had done a fair amount of health-policy work on Capitol Hill in the three or so years between college and law school, and, secondly, more importantly for me, it was clear that this decision would affect people with AIDS. Being a lesbian, I felt very close to the AIDS issues. I knew nothing about disability law but I became very involved in this case.”

  The Reagan Justice Department argued that if someone was fired because of fear of contagion, no matter how unwarranted that fear, this was not discrimination based on handicap but discrimination based on reasonable fear.

  “You don't usually lobby cases in the Supreme Court,” Chai, a small, slim dynamo of a woman, says. “It's just not done. But I talked very deliberately to every clerk in every chamber, presenting my point of view, which was, of course, that Jean Arline should be covered. It ended up being a seven-two decision in our favor and I was very active in drafting the opinion, even though it came out of Justice Brennan's chambers, not Justice Blackmun's.”

  I ask Chai how she got into law in the first place, where her passion for justice came from. “I grew up in an orthodox Jewish home with a strong commitment to social justice,” she says. “My father was an orthodox rabbi who taught Talmud, first in a rabbinical, then a graduate school. In spite of taboos regarding teaching Bible and Mishnah and Talmud to women, it was my father who instructed me. He is a Holocaust survivor who, during the war, lived in the forests of Poland. I grew up thinking about the extent to which injustice can be taken. He taught what was called the scientific study of Talmud, which uses tools like language and history, and uses the Palestinian version of the Talmud as well as the Babylonian. His work was very textual and very analytical.”

  Chai planned to get a Ph.D. in Jewish history and teach. She knew Hebrew, ancient Greek and some Aramaic, and spent the second year of college in a very religious seminary in Israel. While there, however, she decided that she no longer believed in God, and stopped being an observant Jew.

  After college she went to Washington, D.C., where she discovered an outlet for her passion for justice and her desire to do interesting, intell
ectually stimulating work.

  “Though I lost my religion when I was eighteen, my commitment to justice remained. When I discovered law five years later, it was like coming back home. I loved it, I loved figuring stuff out, I loved complicated textual problems. I wanted to do something with my life that made the world better. That didn't feel corny at all.”

  After her clerkship with Justice Blackmun, all she was sure of was that she wanted to do public-interest work, and unlike her own students today, who are graduating $100,000 in debt, she graduated owing little and could manage this. She started working on disability legislation because two days after the Nassau County v. Arline decision, Senators Robert Dole and Bill Armstrong put a bill into the Senate that would amend Section 504 to exclude all people with contagious diseases. Ordinarily that kind of legislation wouldn't have gotten anywhere in a Senate controlled by Democrats, as it was then, but that spring, the Senate was passing a bill called the Civil Rights Restoration Act (of 1988), which was meant to overturn a Supreme Court decision that had narrowly interpreted the terms program and activity, restoring their original broad meaning. Under Section 504, any program or activity that received federal funds couldn't discriminate based on handicap, so how those two words are defined is important.