A Matter of Dignity

by Andrew Potok

  By then, Chai had moved over to the American Civil Liberties Union's AIDS project. “People in the disability community recognized that the proposed amendment was an attack on the disability law itself,” she says, “but there wasn't a real understanding yet in the AIDS community that AIDS was a disability because, like everyone else, they were influenced by the common stereotypes about disability meaning nonability. They were very focused on saying that they were living with AIDS, not that they were victims of AIDS. To the disability community, AIDS was still the new kid on the block. So it was an educational process and I was very active in it. This was the first time I worked with the more general disability community, understanding the wider range of concerns. And we successfully beat that amendment, not only in that Act of 1988 but later that year in the Fair Housing Act. Here was a definite convergence of the two communities.”

  All their legislative efforts were based on the original Civil Rights Act of 1964, whose Title 7 specified that there can be no discrimination in employment on the basis of race or sex. “Initially it was just race,” Chai says, “and some Republicans added sex, figuring that would kill the bill, but it didn't.” Title 2 of the Act covered public accommodation, meaning hotels, restaurants and recreational facilities. Originally it was much broader, covering all types of businesses, but in 1964 that couldn't fly politically. Title 6 of the Act specified that any program or activity that received federal money couldn't discriminate based on race. But housing was not covered under the Act. Then Martin Luther King, Jr., was assassinated, and the Fair Housing Act was voted into law in 1968.

  The Fair Housing Amendment Act, designed to strengthen enforcement of the Fair Housing Act in race, religion and gender, was introduced in 1980 but wasn't passed until 1988. “The civil rights community generally wanted this,” Chai says. “People with disabilities waited to jump on this train, though it wasn't the main focus of the bill but an amazing first step to prohibit discrimination in the private sector, 504 having applied only to programs and activities that got federal funding. And once this passed, nothing else was competing on the civil rights front. There was no other unfinished business. The civil rights community as a whole was ready now to work for all people with disabilities, not just in housing but in employment and elsewhere.

  “I love figuring out legal answers,” she says, “love being involved with the politics of negotiation. From the AIDS project, I went on loan to the disability community for about two years. From 1988 to 1990, I became the lawyer who researched, negotiated and held meetings with litigation lawyers around the country to figure out what they wanted in this new bill, the Americans with Disabilities Act. We had to figure out how to negotiate that in Congress. So instead of working on AIDS stuff, I worked on access problems in Am-trak double-decker dining cars,” she says, laughing. “But the whole thing was a remarkable experience. It shaped what I was going to do for the rest of my life, making me create a new name for what I do in my clinic here at Georgetown Law Center, where I train students.

  “I call what I do legislative lawyering. Litigation lawyers have a special perspective, which needs the law to say X because that's how they have to litigate it. But if the law says X, it may only get five votes. So I am the person who must understand why the litigation lawyers want the term X but also why X drives the senators crazy. You have to get both the law and politics in your gut, and when you do that you can come up with more creative legal and political solutions to political problems. If you're used to an adversarial position in court, the idea that you have to negotiate is tough. But on the Hill, if you don't negotiate, you won't have a law.

  “Looking back on it, I had way more responsibility than I probably should have had, considering the short time I'd been doing it and how little I knew about disability. I do learn quickly. It's one of the things I do well. I'm a sponge. I learned disability politics from the people who'd been doing it for a long time. The law part came easily. It was a remarkable experience in terms of having an impact.

  “So imagine,” she says, “in my first three years on the Hill, I worked on three pieces of legislation, the Civil Rights Restoration Act, the Fair Housing Amendments Act, and the Americans with Disabilities Act, all of which passed. That's very unusual.”

  In 1991 Chai came to Georgetown for two years as a visiting professor, taught disability law and legislation, then decided that she was too much of an activist to just be in the classroom and was about to leave. The school then said it wanted to set up a federal legislation clinic but didn't really know what that would mean. “Oh, I told them, I know exactly what that would mean, and to create the clinic, I used the term legislative lawyer and created a theory to go with it.

  “My clinic in the law school is like a practicum. I have twelve students each semester and four organizational clients. The students work for the various clients on interesting issues, such as trying to stop those localities who attempt amending the Fair Housing Act to get rid of group homes of mentally disabled people in particular neighborhoods. We've been working on medical privacy issues for the working group of the consortium of citizens with disabilities, and on restraint issues in institutions for another client, the National Protection of Advocacy Systems.”

  Usually Chai's students sign up for the clinic because they're interested in social policy, in changing the world. Only a few of them have a prior interest in disability, but by the end, several more are energized by these issues, even if they haven't been personally touched by disability. “When my students are given the opportunity to work with disability rights,” she says, “they understand them, not instinctively but through engagement with the issues. That's the way it happened to me too. That's how we grow and what's so amazing about life.”

  She runs the Federal Legislation Clinic and teaches what she learned in the ADA process in a cozy wing of the larger academic law center. In her office, one wall is devoted to disability mementos, among them the framed first and last pages of the Americans with Disabilities Act and photographs with top ADA lawyers and legislators. Another wall is devoted to Jewish things, including the famous quote from Rabbi Hillel: “If I am not for myself, who is for me? If I am only for myself, what am I? If not now, when?” One whole bookcase is devoted to ADA-related literature, another crammed with books on gay rights. “I'm incredibly proud of the most recent addition to these walls,” she says. It's a calendar on which she has devised a complicated system of colored dots, intended to regulate her unbelievably busy schedule. “When I've accepted a speech out of town, it's a blue dot,” she says. “In town it's half of a blue dot. If I say no to a speech, it's a green dot, no to a writing project, an orange one. It took me a long time to come to this but it's a great visual behavior-modification system.”

  In her teaching, she and her students write and interpret legal texts. Chai made a motto for the program: “Changing the world one word at a time.” “I love the intellectual challenges that I've created for myself here. I like twenty issues at a time. I'm sometimes amazed that they pay me to do this.”

  Mary Lou Breslin, on the other hand, does most of her work at home in the flatlands of Berkeley. Her home office, with its modified computer work station, its tables and bookshelves arranged just so, has enabled her to keep working. She can't stand or walk and she transfers from bed to wheelchair to toilet and shower with some help.

  Outside, she tends a garden with large terra cotta containers at wheelchair level. Her modified minivan is equipped with electronic hand controls and she drives it directly from her wheelchair, an enormous improvement over having to transfer into the seat of a car. “The technology has kept up with my decrepitude,” she says. “Now all it takes is money.”

  She seems to have paralleled her cultural and ideological journey with her geographical one, moving in the late 1960s from Kentucky to Chicago, and then to the eye of the disability movement's storm, Berkeley. “Getting to California was its own little saga,” she recalls. “In Chicago, I was on a job search
which was hideous in its difficulty. I was using a push chair and could transfer in and out of a car. I was pretty mobile— driving even though I had a lot more physical limitations than I was willing to admit. I pretended to be a paraplegic, but I was worse off than that, a lot worse than I looked.”

  Eventually she found a job as a psychiatric social worker, for which she felt completely unqualified. She had no special training or supervision, just her growing sensibility regarding injustice. While she worked in what she refers to as a snake pit of an asylum, she was also getting a graduate degree in sociology from the University of Chicago. It was 1968, and she and her close friends were involved in the radical politics of that tumultuous year. “I'm amazed that something terrible didn't happen to me,” she says. “From my middle age, I look back on it with horror.” A man she was living with was arrested and put in federal prison. She moved to Oklahoma, waiting for him to get out of jail. While there, she went back to graduate school and met another guy, moved with him to South Dakota, then New Mexico. She had a terrible time finding work and finally decided to change her life dramatically by moving all the way west.

  “I remember sitting at a rest stop on the highway with all my belongings in the car, debating whether to return to Norman, Oklahoma, where I knew people and life was fairly easy, or to go on to California where I also had friends but where the access was completely horrible. It was a literal turning point.”

  At that time, she was able to get around fairly well, especially where the terrain was flat. But hills presented a problem, and her California friends lived in the steepest parts of San Francisco. “I knew that I'd constantly have to ask people to drag me up and down stairs,” she says, “but in spite of it, I decided to go on to California. Not only was I in a high emotional state after the breakup of my relationship, but it was the first time I'd done anything like this by myself, where I didn't have someone around to call upon for help if I needed it.” Once she got there, her friends quickly adjusted to her needs, with a flurry of ramp making and widening of bathroom doors. Finally, she got a job at the University of California at Berkeley, working with disabled students, and found herself appalled at being identified with other people in wheelchairs. “It took some doing to crank up my attitude around my job,” she says. “I had this leftover attitude from the University of Illinois, a passive-aggressive notion about disability.”

  By then it was 1975, and the disability movement was already established and flourishing in Berkeley. The Center for Independent Living had been around for three or four years. As soon as Mary Lou found herself employed in a place with even an ancillary role in community politics, she was instantly drawn into all of it, every activity, every meeting. In 1977, she was brought in to administer a federal contract charged with training people with disabilities in their rights and responsibilities under Section 504, which had just been signed into law. “The role of law and communities in changing social policy became apparent for the first time,” she says. “I got my teeth into real legal issues. It was the most interesting professional time of my life because it was expanding so. There was a huge amount of stuff to learn, and it felt a lot better than going to law school.

  “I had a little epiphany when I moved on from the university job to one at the Disability Law Resource Center, a program of the Berkeley Center for Independent Living,” she tells me. “We had begun to realize that we needed to challenge restaurants and movie theaters that were telling us that we couldn't enter in wheelchairs, that no law existed to cover this, and after our people were trained, they ran workshops about the laws and regulations, the basic principles that eventually became the ADA.”

  The Disability Law Resource Center, funded by government money and staffed by young lawyers, grew out of those issues, evolving from zero to forty-five workers in four months. They brought in lawyers with lobbying experience and researchers in community issues. The new center had to be very knowledgeable about every nuance and interpretation of all the various policy issues, for its participants were teaching and litigating, garnering hands-on experience to bolster what they knew theoretically. They taught people how to use law libraries, how to do legal research. “I got an eye-opening jolt of what the opportunities were,” she says. “Our lawyers didn't do disability, they did civil rights, and that spin influenced me in a profound way, and still does.”

  Before all this, if one thought about disability at all, one thought about it in terms of social welfare, rehabilitation and medicine. But the center wouldn't hire anybody who hadn't worked in civil rights. No matter how qualified in other ways, anyone who had an altruistic, paternalistic, medical or volunteer-oriented point of view didn't make it through the door. Theirs was a community law center where a person who was being discriminated against could come and tell his or her story. People became aware that discrimination takes place because of society's attitudes toward disability. They had to find a new language to address it, to understand that discrimination is generated by fear and bias and stereotype, not by anyone's being pushy or demanding. That organization became the Disability Rights Education and Defense Fund, which broke off from the Berkeley Law Center and found its own identity.

  “I've been in that job in one form or another for about twenty years,” Mary Lou says, “doing public policy development and litigation involving lawyers and senior public policy analysts, all of whom are disabled.

  “I keep telling you this, Andy,” she reminds me, “but it's still such a wonder to me that before this time, it didn't occur to me to connect race with disability civil rights. I got it in race but I damn well didn't translate it into disability issues. So thank God that I was in the right place at the right time. And I basically never left that job.”

  She says that it's easy for people to get stuck in old thinking, to lose track of new, relevant, burning issues. “There's not been a good collaboration or synergy,” she says, “between the lawyers that do the rarefied theoretical work and the whole other world of academics who are thinking about disability as a social construct, about the role of technology, about the way we define disability from a social perspective, looking at it from the philosophical rather than the legal point of view. There's not enough cross-fertilization. On the other hand, I love the rigors of the law and the way that these lawyers consider these issues. The academics often don't even recognize that the lawyers exist and are sometimes way ahead of them.”

  When we meet for dinner in a Berkeley restaurant, I wonder where else in the world a quadriplegic could find so much access and feel so confident and comfortable as here. The management of the restaurant is neither shocked nor diffident about her in her mechanized wheelchair or me with my guide dog. They are not only welcoming but free of sentimentality and condescension. “That's true,” Mary Lou says, “but architectural access and attitudes are improving all over the country.”

  Accessibility and attitudes are changing primarily, I am sure, for the more privileged, upwardly mobile middle class. With my first guide dog, I fought with airlines to allow him on with me. Now, attendants and pilots go out of their way to tell me what a privilege it is to have a dog flying on their plane, pulling dog treats out of their pockets. The other day, all the passengers on our flight were held up for ten minutes while a severely disabled man was helped to make the transition from his wheelchair to a seat. No one standing in the jet-way complained, and when we boarded, people seemed to go out of their way to tell the apologetic man that he had discommoded no one.

  At our table, Mary Lou tells me about having recently interviewed C. Boyden Gray, the senior Bush's general counsel when Bush was vice president and president. She was working on a project chronicling the history of the passage of the Americans with Disabilities Act and asked him to list his proudest accomplishments. “Like everyone who had anything to do with the ADA,” Mary Lou says, “Boyden Gray put it at the top of his list. But do you know what the other things on his list were? Helping to get Clarence Thomas to the Supreme Court and pushing
Bush into the Gulf War. I nearly fell out of my wheelchair,” Mary Lou tells me, “but it does remind us that the ADA happened on Bush's watch. The sad thing is that though conservatives allowed it to happen, they are now trying hard to dismantle it, to take away what was given.”

  In fact, in 1982, Vice President Bush wanted to wipe out all of the hard-won disability rights laws of the 1970s. At the time, Reagan and Bush had a mandate for deregulation, and Bush was put at the head of a task force for regulatory relief. Both Section 504 and special education came under severe attack, but Bush not only began to understand that he was dealing with a hidden grass roots constituency, he also believed that it couldn't be that bad or even that costly, if it was true that disabled people merely wanted independence, wanted to make the transition from welfare to jobs, from bureaucratic entanglements to empowerment. Several Republicans who were themselves disabled leaned heavily on Bush, and by 1983 he dropped his objections to 504 and special ed. “I'm going to do whatever it takes to make sure the disabled are included in the mainstream,” Bush said at the Republican convention when he ran for president.

  Mary Lou confides that she is struggling to find new ways to teach. “You have to get it all together in your own mind beforehand. To me it's worth some energy to step out of thinking about public policy, which has been my focus for a hundred years, and try to think about things just theoretically. And one of the things that's clear is that we are in the middle of a new paradigm, and we need to define it and look at it to see what it is and where it's going and what its components might be. It's been an interesting exercise. In my classes, I try to teach the recognition of shifting paradigms because they're all in place at the same time. Some are dominant, and sometimes one is more dominant than the other. For instance, I've been rethinking the civil rights paradigm which I've been devoted to for the last two decades. I'm not abandoning it but acknowledging its limitations. For years I believed that if we could just advance this perspective through the courts and through education and enforcement, this would really solve some basic problems. I now have a better grip on what the limitations of that are, and realize too that there are other things that need to be factored in.