A Matter of Dignity

by Andrew Potok

  Even among people who are themselves disabled, I've known many who are grateful for whatever crumbs are thrown their way. “Sorry,” they—we—often say, “sorry for being here, for taking up space on the planet. Why make waves? Why put an extra burden on society?” Like the American Jews who didn't want to attract attention to themselves by speaking out about the Holocaust as it was happening, so do many who are disabled feel visible enough—with our canes and crutches and wheelchairs, our differentness—without the spotlight of added attention. The less we are talked about, the easier our passage through life. The less noticed, the less despised.

  Nevertheless, many want not only to be noticed but to be actively recognized and supported as equals among fellow human beings. They want to be seen not as a population that is pitiful or unable to care for itself but, by law and attitude, a population that demands and is entitled to the same rights to health care, housing, education, transportation and communication as everyone else. If the disabled need modified or expanded accessibility in order to level the playing field, then that accessibility is their due, just as it is the due of the able-bodied who are given access via stairs or print or language.

  Some disabled people are demanding, and the manner in which they demand is not always sedate and noiseless. An incident that I knew nothing about at the time took place in 1990, and hearing about it later, I began to question my instinctive lifelong sense of decorum. The action was called the Wheels of Justice march. On that day, 475 people in wheelchairs gathered in front of the White House, and another 250 by the elegant, curving steps at the base of the Capitol. “Access is our civil right,” the crowd began to chant as they slipped out of their wheelchairs to crawl up the eighty-three marble steps to the Capitol, each of them carrying a scroll of the Declaration of Independence.

  It was a chilling action, brave and focused, precisely to the point. But on being told about it, a friend of mine shuddered. “How awful,” he said, “crawling up those steps like snakes.” It would probably be a stretch to translate what evolutionary biologists consider our genetic dread of snakes into a built-in fear of the disabled, but the Wheels incident contrasted my own feelings about propriety with my love of oppositional politics, the sentimentality of romantic struggle, the uphill fight, the underdog. Perhaps this too is born of natural selection, some of us preserving what is, others stretching it, taking risks, skydiving.

  After I learned about the march, I started reading about “the rolling quads” of the University of California at Berkeley, who in 1962—the year that James Meredith made his heroic stand in Mississippi—insisted on being seen, on not being invisible, on being given access to school and home and community. In Berkeley and in Mississippi, they made noise and turned it into music.

  The disability community had to decide, one person at a time, whether their condition reduced them to feeling forever small, unimportant, peripheral, even nonexistent. For how does one dare to make noise from a wheelchair? From blindness? From stammering? From retardation? And who had given permission not to be nice, to break from conservatism, to find the courage to stir up wrath, break the bonds of civility and decorum?

  Thinking about disability required major shifts of consciousness—from charity to civil rights, from sentimentality to a recognition of a wide spectrum of human possibilities— before laws could even be thought about. Moving from parents ending their isolation and mobilizing professionals by organizing around issues of their children's diseases to the creation of the Americans with Disabilities Act in 1990 represented a huge conceptual leap. Collecting money for “cures” or research sometimes helps, but to be considered fully human, with equal opportunity and dignity in every aspect of one's life, helps a lot more.

  Businesses, legislators, courts and the public at large wrangle about the creation of disability laws and regulations not only from fears of getting an insufficient piece of the finite pie but from the fiction of a social contract that considers every citizen an independent productive worker, a competent adult assumed to be free and equal. Provisions for people who aren't part of the bargain—those dealing with disease, old age, accidents at birth or acquired during life—are not part of the basic institutional structure.

  Discrimination began to emerge as a central issue as it became increasingly clear that lack of access to buildings, programs and transportation was more than an oversight. It was discrimination pure and simple, another kind of segregation. But as the disability rights community began to think about laws and legislation, they realized that barring discrimination solely on the basis of disability left several questions unanswered. In previous legislation targeting discrimination pertaining to race, gender, religion or national origin, those characteristics were to be ignored so that an individual could be judged only on merit. But in order to offer equal opportunity, disability required affirmative efforts. Though it borrowed language from race-oriented civil rights legislation, that language would have to change dramatically when its focus became disability. Disability had to be acknowledged rather than ignored. The concept was revolutionary. Before it could be accepted, people had to assume that the disabled were just as much a part of society as the nondisabled, deserving a legal offensive on obstacles such as stairs, inflexible work schedules and the lack of supportive devices. Though the struggle would never be smooth or easy, several factors were in its favor. The public was somewhat sensitive to injustices in society because of the previous successes of the civil rights and women's movements, and most of Congress perceived disability as a motherhood issue, a vote that cost nothing and angered no one, not much different from its sentimental and meaningless hire-the-handicapped resolutions of the past. But they were all to learn that disability rights would not be free, and several administrations fought hard to deny the rights that were to be provided by the proposed legislation.

  In spite of the enormous difficulties ahead, the disability community had begun to coalesce into a powerful group whose ranks included representation from rich and poor, men and women, people of all colors, religions and ethnic backgrounds, as well as members of Congress themselves.

  The sequence of eventual laws and legislation included the Architectural Barriers Act of 1968, which stated that all buildings receiving federal support had to be accessible to the disabled. As was to repeat itself in the future, people tried hard to weasel out of even the cheapest alterations, claiming high costs or the compromise of architectural integrity in spite of Department of Labor figures that stated that half of the legislated architectural accommodations cost little or nothing.

  In 1973, in the second Nixon administration, the first civil rights law for people with disabilities, the Rehabilitation Act, was passed. It was applicable only to programs that received federal funding. Section 504 of the Act, a legislative afterthought, made it illegal for a federal agency, public university, defense or other federal contractor to discriminate against anyone solely by reason of handicap.

  No one knew who had suggested adding civil rights protection. It was buried, seemingly innocuous, but the wording was clearly copied out of the Civil Rights Act of 1964, which had ruled out discrimination on the basis of race, religion or national origin. The powerful language of Section 504 was not subjected to hearings or debate of any kind, but luckily there were people in the nascent disability movement who recognized what had fallen into their laps.

  Interpreting discrimination was an ongoing task in implementing the Rehabilitation Act. In race it meant to take the signs off bathroom doors, to level the playing field. With disability, proactive steps were necessary in order for opportunities to be offered. Things like architectural barriers, which would have to be remedied, didn't exist in race and gender.Words like reasonable accommodation came from this time, words now fairly well known, meaning any modification in access, physical or programmatic, including support such as a reader or interpreter, that enables a disabled employee to perform a job up to the standards required by the employer. In one case, when a perso
n in a wheelchair tried to board a bus but couldn't get on, a judge used the race analogy. “If the bus driver opens the door and says come in, that's enough,” he declared. It took a smarter judge to realize that opening the door is not enough, that means have to be provided for boarding the bus, that the physical barrier served as the vehicle for discrimination. This was a new concept.

  The Ford administration recognized the significance of Section 504, estimating compliance at billions of dollars and effectively stalling the issuance of final regulations. Though President Jimmy Carter had promised to complete what Gerald Ford had begun, his HEW Secretary, Joseph Califano, was so alarmed by the scope of Section 504 that he pleaded for time and effectively blocked its implementation, even claiming that alcoholics, drug addicts and homosexuals would seek protection under this law.

  Demonstrations and front-line barricades, organized to demand that Califano make the law more than a hollow promise, took place in some ten cities in 1977. A quiet candlelight vigil of people in wheelchairs was organized in front of Califano's Washington home. They wanted him to sign the regulations immediately, without weakening them. Other demonstrations followed and three hundred people took over Califano's office overnight. Infuriated, he refused them food and phones, and the demonstrators left, defeated.

  In San Francisco, however, the sit-ins endured, with demonstrators putting their lives on the line. Some two hundred people locked themselves in the Federal Building and, supported by the mayor and several community organizations, they persisted in spite of terribly harsh circumstances for twenty-eight days. This was one of the first times that people with very different disabilities recognized the benefits of working together.

  From Washington, Califano again tried to cut them off but, because word had gotten out and many people outside smuggled in food and services, sabotaging Califano's efforts, he caved in and, in April 1977, signed the regulations without changes.

  He had similarly stalled the implementation of the Education of All Handicapped Children Act of 1975—later renamed and rewritten in 1990 as the Individuals with Disabilities Education Act—but was now forced to activate this law as well. As a result, variously disabled kids began to be mainstreamed into public school classrooms. This act has helped not only to create a generation of people who have learned to live independently and to be active in pursuing the dignity that comes with civil rights but to demonstrate to ablebodied children that the disabled are not objects of fear and strangeness but rather ordinary people like themselves.

  All of these actions required focused activism, a rethinking of the status quo, a reexamination of given ethical points of view. But even the Air Carrier Access Act, which allowed people like me to board planes with their guide dogs, ran afoul of the Supreme Court until it was strengthened by Congress in 1986. The resistance to many of these new laws was based on the perceived difference between disability legislation and the antidiscrimination laws regarding blacks. The latter was a financial saving. This was the opposite. How inclusive any new law had to be, how much money had to be spent, became the new balancing act, defining much of the relevant legal debate of the 1980s.

  Particularly from the mid-1970s on, nationwide demonstrations and disturbances focusing on disability rights took place more and more frequently. There were sit-ins and crawl-ins, and in a 1988 uprising, students at Gallaudet University demanded, and got, a deaf president—which not only marked a great victory but was a television event, the disability movement's equivalent to Selma and Stonewall. Nevertheless, the culminating event of this era was the passage, in 1990, of the amazing Americans with Disabilities Act, unique in the world for its recognition of the rights of disabled people. Even so, many important parts, such as punitive damages for discrimination and making buildings and all transportation accessible, had to be bartered away to satisfy the heavy lobbying demands of business. Still, no business lobbies wanted to be actually seen as bigots, nor did they want to miss out on the huge number of the disabled as a source both of labor and of customers. Reluctantly and slowly, the business community complied, though it and others are constantly testing the scope of these laws.

  Central to the critical legislation and to the politicization of a huge, previously little-heard-from minority of this period were imaginative and brilliant disability activists, academics and lawyers, some disabled, some not. There are times when thinkers are heroes, when self-interest is eclipsed by a drive for justice, when experience and thought join as wisdom, when the law, one word at a time, stumbles ahead and ignites real change. Why some go that less-traveled path and what they do once they find themselves on it was the drive behind my finding and exploring the lives and thoughts of two women, Mary Lou Breslin, an activist and social-policy scholar, and Chai Feldblum, a legislative lawyer.

  RIGHTS

  When I first talk to Mary Lou Breslin, I use the words helper and helping in describing the book I want her to be a part of.

  “Helper?” she all but growls.

  I hadn't given the word much thought and don't get what her problem is.

  “I spent a lot of years trying to change the way people think about disabilities,” she says. “I've put a lot of thought and effort into changing from a helping model to a more integrated holistic one that includes civil rights protections but also includes a postmodern paradigm.” She wants to know how a civil rights component would fit into my “helping mode.” Unmistakable disdain travels the phone connection from California to Vermont. “It's hard to think of helping as the solution,” she says.

  What am I getting myself in for? I wonder. What could be wrong with helping? Still, from the beginning of my contact with Breslin, I was intrigued with her defiance of familiar ways.

  “Look,” she says, “we're all intertwined in complicated networks. In disabilities we're intertwined with those who help but also with communities and our families. The trick is to get the analysis past the notion that helping is the fix. Sure, there is a need for facilitation and support, both integral to our having real choices, but helping as we have known it is not a piece of it. It's part of a model we've spent a lot of time trying to get rid of. It's important to analyze these interrelationships in a way that's contemporary. But another book about people helping people with disabilities? It may clarify motivations for doing one thing or another but it won't add anything to the movement.”

  It took Mary Lou a couple of long phone conversations to begin to trust my motives and, I must admit, it took me that long to feel comfortable with her academic point of view. Though she is indeed a brilliant academic and legal scholar, I came to delight in her thoughtfulness, her warmth, her ardent activism.

  “The public is far from understanding what the movement is, what the real issues are,” she says. “To understand disability in any sophisticated way is beyond most people. So the very notion of helper and helpee serves to reinforce the old models. The disabled can't be defined by their need for help. When you get a dog,” she says to me, “you get trained and you leave. It's a tool on the way to things you have to do, that's all. The same with a car that needs fixing. It doesn't dominate or define your life.”

  I realize that I have to start nudging and replacing some of my ancient received notions about disability—hers, theirs, mine—to make room for all this.

  “Before the civil rights laws were passed,” she tells me, “the paradigm was mainly medical and paternalistic. It's a legacy of a few hundred years of the charity model. The byproduct of industrialization was the marginalization of people with disabilities. Once people are marginalized, there needs to be social policy to deal with this isolated group, so large state institutions developed in the 1910s and ‘20s to isolate people from communities, a kind of eugenics movement to put people away so they don't contaminate the breeding stock. This longtime isolating of people has created the present feelings about disability, the public stereotypes. The government's reaction to this group of people has been to continue to leave them in a marginalized state,
in spite of funding for social work or rehab counseling. Whatever can't be fixed with medicine or rehab then remains the responsibility of the person. No more obligation after that. Thus, until 1975 there was no mainstreaming into public schools, only various segregated facilities. That legacy is powerful in the way people still think about disabilities. The idea of helping triggers in me this whole picture of the pre-civil rights paradigm—and,” she adds, “that may not even be the paradigm we're now living in. We may very well be, and I suspect we are, inside a wholly new paradigm.”

  Though I am the petitioner who knows damn well that I have found the controversies that fascinate me and the right person to take me deeper into the disability movement, I feel as prickly as she seems to be. Paradigms, paradigms, I spit on your stinking paradigms, I want to say.

  “How independent are you?” I ask instead, knowing nothing of her physical condition. “Do you ever need help?”

  “The reality of my own life is that I do need help,” she says. “I'm a quadriplegic and need help even getting out of bed in the morning, but I choose who, where and how. The exercise of these choices is what the movement has enabled. It characterizes the shift from the medical to the sociopolitical model.”

  “Has any of this slowed you down? How are you limited?”

  “You mean in the global existential sense or literally?” she says, laughing. “I've nearly always been a quadriplegic in the diagnostic sense. I use a motorized wheelchair. Polio is completely nondiscriminatory. It can get one arm, one hand, two arms, two legs, only legs, one leg, just the breathing, anything. I'm considered a quad because I have some muscle weakening from the neck down. I have some functioning muscle in my left leg and my right arm is pretty strong, which is really what keeps me functioning with relative independence. I have a very bad back and my stomach muscles are zero. I've had spinal fusion surgery because I was so unstable in my trunk area. I drive in my fabulous modified van. I mostly live alone. Physically, in spite of some pretty heavy joint problems, I fend for myself, though I'm shifting to using more personal assistance. I now have something called post-polio syndrome, pretty universal in folks my age. All my problems are biomechanical, joint things that happen when you have a muscle working on one side only. There's erosion, spurring, that kind ofjunk. The attendant care enables me to keep working. I'll keep that going as long as I can afford it. I'm really happy to have help. I'm not resisting it in the least.”