A Matter of Dignity

by Andrew Potok

  “We've been extraordinarily successful in this country focusing on civil rights,” she says, “certainly more successful than anywhere else in the world. But we've been extremely unsuccessful dealing with social rights, which is done much better elsewhere. Twenty years ago, in order to make our case for civil rights, we put a high fence between them and social welfare, and now we're realizing that you can't separate the two.”

  Integrating institutionalized people into communities, for instance, and thus assuring their civil rights, can't happen without a lot of help. To make equal opportunity and free choice a reality, you need money and programs. “We used to insist that we weren't sick and thus didn't need social or medical services,” she says. “ ‘It's not about medicine, it's about civil rights,’ we said. Well, we need both.”

  As we talk more about the movement, I begin to hear a deep sadness in her voice. “I'm as ill-informed now as I've ever been,” she says. “I guess that's a function of working at something for a long time, having felt intellectually in control, and suddenly realizing that maybe the world isn't where I thought it was. It feels like I have to start over again. I feel now the way I did when I first started in the movement. I've been going through some theoretical transformations during the last couple of years and I'm worried that whatever worldview I come up with will not make sense for the future. But, you know, a lot of other people are thinking about all this as well. I hope we can come up with a sufficiently meaningful vision.”

  After our dinner, I follow Mary Lou out into the parking lot where, with a remote control, she lets down a ramp in her van. “Go have a look inside,” she says and Tobias and I prowl around the interior. The space behind the driver's controls is empty. “Feel the floor,” she yells up and, on my knees, I finger the metal sockets onto which she will lock her wheelchair. “Pretty spiffy, don't you think?” she asks, laughing. When Tobias and I go back down, Mary Lou scoots in and locks her fabulous wheelchair into place. With her one good hand working the sensitive hand controls, she starts the van and, shouting goodbye, zips out into Berkeley traffic.

  Chai Feldblum's work on changing the world one word at a time was in full swing in 1988, with two major acts, the Civil Rights Restoration Act and the Fair Housing Amendments Act, which linked not only the AIDS and disability communities but the disability and civil rights communities. This took some doing. People in the civil rights world had to become educated to understand that disability was a civil rights issue.

  “That seems instinctive to me now,” Chai Feldblum says, “but it wasn't instinctive then, not to me and not to others. I saw that change happen, and once that coalition was formed, we realized that it was essential for the passage of ADA.

  “The civil rights leadership put ADA as one of its legislative priorities,” she says. “That was key. Another key was a Democratic Senate and House and George Bush as president. This brings in the old AIDS story again, because when Bush was a candidate, the Reagan commission on HIV came out with its recommendation that Congress should pass a general disability-antidiscrimination law, an interesting recommendation coming out of an HIV-specific commission.”

  At that point Chai had been working on an AIDS-specific antidiscrimination bill, but a couple of people from the larger disability community thought that it made sense to be more inclusive. Since there is no law to protect everyone with disabilities, why, they asked, would it make sense to have a law to protect only people with AIDS? “Politically it wasn't so clear which was the better way to go,” she says. “If you included all the other disabilities, you had cost issues, but if you did AIDS alone you didn't have the power of the full coalition. We came to the conclusion that from both an ethical and a political level we should not try to go AIDS-specific. Candidate Bush went on the record saying that there should be no discrimination about this, and his word on the record turned out to be incredibly important.”

  The first draft of the ADA was a great piece of legislation, fixing all the problems of 504, problems such as limits to the concept of reasonable accommodation, business having claimed that it was too great an expense, an undue hardship and burden. Under 504, retrofitting existing buildings or vehicles was not part of the statute, but this first draft required significant retrofitting. It turned out that the first draft was unrealistic politically, and four people—a staff member from Tom Harkin's office, one from Ted Kennedy's office, Chai and a lawyer from DREDF—worked for months to redraft that version of the ADA, still using 504 as a template. They introduced it in May 1989 and hoped that the Bush people would endorse it, but there were still a few unresolved issues.

  After enjoying great bipartisan fanfare, the bill moved into hearings, where John Wodatch in Attorney General Richard Thornberg's office was a key player, negotiating on behalf of the Bush administration. Wodatch had begun his career in 1973 in HEW's Civil Rights office, when it got the job of writing regulations to implement Section 504. Like Chai, he had had no connection to disability before, but it was he who came up with the innovative and crucial idea of “reasonable accommodation.”

  Richard Thornberg, who himself had a child with a developmental disability, said he supported the bill in concept but was concerned about twelve or so minor issues that the business community objected to. Some bizarre negotiations then ensued in which people from the Bush White House and staff people from both parties in the Senate sat in a room together to carve out an ADA that the president would endorse. They hammered it out around the clock, producing reams of paper stating White House positions, then responses to each of these issues. Chai would then send these to a core group of litigation lawyers. This back-and-forth negotiation went on for about a month. As the process neared its coda, the two sides traded and traded big.

  “We gave up getting money damages in employment and in public accommodation,” Chai says, “in return for a broader definition of what a public accommodation is.” In 1964, when the Civil Rights Act was passed, public accommodations only covered hotels, restaurants and recreation facilities. It did not include the corner grocery store, which they now wanted to include.

  So their argument in this new draft of the ADA was based on two very simple messages: one, extending 504 to the private sector, and two, asking for equivalence, namely, the same protections for disability as already existed for race and sex. Their feeling was: “Whatever they have we should have.”

  Chai's group felt pretty sure that they would eventually get damages. They wanted the enforcement section in the ADA to simply be cross-referenced to Title 7 of the Civil Rights Act of 1964, which prohibited discrimination on the basis of race or sex in employment, and to Title 2, which dealt with public accommodation. They hoped it would happen and it actually did, in the Civil Rights Act of 1991, a year after passage of the ADA.

  Late one afternoon, they thought they had a deal, but Bush's chief of staff John Sununu had a problem with elevators. “Can you believe it?” Chai asks. “Anyway, we cut an elevator deal at three A.M.Then they went to recess and, exhausted, I went to Hawaii.”

  When in the fall of 1989 the bill finally went to the Senate floor, there were fights about excluding people who used drugs, but not much else, because of the magic imprimatur of Bush having signed off on it. “It passed in the Senate,” Chai says, “and it would have been nice had there been only one house of Congress, for unlike the Senate, where ADA had to make it through one committee, in the House there were four: Labor and Employment, Energy and Commerce because of railroads, Judiciary because of civil rights, and Transportation, which involved Amtrak. It was a bit like four different episodes of a sitcom,” Chai says, “each with its own personality, with four different climaxes to the story.”

  In Labor and Employment, the business community was relentless, adding issue upon issue. Negotiating produced around twenty changes in the committee report and twelve more changes in the bill itself. For the next four months, the group moved into Transportation. Energy and Commerce followed and there Amtrak, which turned out
to be everybody's client, produced endless wrangling. “We did horrific rewrites upon rewrites,” she says. In April 1990, the last gasp of the business community was heard in the Judiciary Committee. The bill got to the House floor in May, where several amendments were offered. They beat down all of them except one that wanted to exclude people who engaged in food handling and had contagious diseases. That started two months of very intense lobbying, forcing the disability community to get together even more with the AIDS community. “It was wonderful,” Chai says. “We stood strong, but what ultimately saved us was legislative lawyering, because we would not have won on a straight up-and-down vote without compromising.”

  A list now had to be issued about specific diseases that could be transmitted through the food supply so that only people with those diseases could be fired, which was consistent with the old Arline case and protected the people with HIV. That deal finally came through at the end of June. The bill passed overwhelmingly in the House and Senate and the president signed it on July 26, 1990. The only significant opposition to the ADA came from ultra-rightists led by Jesse Helms, who mustered only seven other Senate votes. “And I have never been so happy in my life!” Chai says.

  When I talked about the wonders of the ADA and Chai's breathless voyage through it to a disabled friend involved with the Independent Living movement, he made a dour face. “It's better than nothing,” he said, “but it's a law with no teeth. It's like the Montana speeding law. You can drive as fast as you like as long as you drive safely. What the hell does that mean?” He laughs. “Look, I'm an ex-cop and I know that the only kind of law that matters is: ‘If you don't make your business accessible, we put a padlock on your door.’ End of story.”

  Just as civil rights laws make little difference to blacks trapped in ghettos, large numbers of the severely disabled will not be helped by civil rights legislation. They need a lot more but there are many paradoxes. A person takes a job and is threatened with losing attendant care, health care, food stamps and housing subsidies. Some simply can't work. The homeless schizophrenic needs more than civil rights. He needs meals, a roof overhead, dignity and treatment.

  The Americans with Disabilities Act is a great piece of legislation. It has also produced a backlash of hatred toward the disabled, a phenomenon that accompanies any constituency's struggle for civil rights. In spite of 70 percent unemployment in the disability community, those who do work are often resented for taking jobs away from the ablebodied. Scapegoating knows no bounds.

  The law itself, though seen by some as toothless, by others as significant primarily to the upwardly mobile middle class, is constantly being probed, often narrowly interpreted by the courts reflecting reactionary attitudes, by states pleading poverty and by the unashamed entitlements of business. In February 2001, the Rehnquist Supreme Court continued whittling away at the ADA, saying that state employees who suffered discrimination on the job because of their disabilities could not sue their employers for damages in federal court. This court held that Congress has no constitutional authority to subject states to such lawsuits under the Act.

  The case arose out of the specific job-discrimination claims of Patricia Garrett, a nurse at a state university hospital who was assigned a lower-paying job after returning from breast cancer treatment, and Milton Ash, a security guard with asthma who claimed that he was treated adversely on the job after demanding accommodations for his condition.

  The Supreme Court overruled Congress by holding that state governments can arbitrarily deny jobs to disabled people without violating the equal protection clause of the Constitution, even though a federal court of appeals had previously decided that the ADA prohibited such discrimination. The Supreme Court majority put cost accounting above the right to access when they wrote that it would be “entirely rational and therefore constitutional for a state employer to conserve scarce financial resources by hiring employees who are able to use existing facilities. If one is denied a state job solely because he or she must use a wheelchair, it seems a clear violation of the equal protection of the laws called for in the Fourteenth Amendment which extends universal civil rights to all Americans regardless of the state in which they reside.”

  The pendulum swings. At times, the words of the law seem lost in a din of markets, profits and greed. There are other moments, however, when one detects progress, an upward spiral, times when changing the world one word at a time actually seems possible.

  BODIES

  DAVE LONEY

  prosthetist

  JOHN FAGOM

  photographer, teacher, prosthetist

  PROLOGUE

  Appearance—how I look, how I present myself in public, what immediate gut reaction I provoke—matters. Even though I have been able to effect certain attitudinal changes, some because of the exigencies of the aging process, I can't entirely shake the earlier influences that are hardwired into my brain. Coming from the family I come from, all my behavior, all my dreams and desires were pointed toward a charmed life.

  My family's business, in America as it had been in Warsaw, was producing beautifully crafted, exorbitantly priced furs that they sold to kings and queens, presidents and their wives, Hollywood stars, the fabulously wealthy. If I were looking for metaphors representing the distance between surface and substance, I wouldn't have to go far beyond the skins and pelts of their trade. Everything in that business depended on beauty and glamour. The only deviation from the norm that was tolerated was the egregious behavior of the rich and famous. But good manners were sanctioned and rewarded. Good looks and charm got you what you wanted. It didn't take a genius to extrapolate that disability was ugly, a pitiful state, worthy of invisibility. As a disability scholar has suggested, “Corporeal departures from dominant expectations never go uninterpreted or unpunished, whereas conformities are almost always rewarded.”

  Though pursuit of the beautiful, however defined, is not necessarily corrupt or exclusionary, it is often disturbing to the disability community. Americans cherish youth, virility, activity and physical beauty, not often associated with disabled people. Because of the addiction to such attributes, disabled people find themselves on the periphery, often feeling like supplicants to the fortunate mainstream.

  As recently as the 1960s, statutes in some American municipalities known as “ugly laws” stated that the sight of disabled people was offensive. Such laws proclaimed that “no person who is diseased, maimed, mutilated or in any way deformed, so as to be an unsightly or disgusting object, is to be allowed in or on the public ways or other public places.” How many generations does it take for sentiments such as these to be cleansed from consciousness? How many to find acceptance and even beauty in aberrance and deformity? In the mid-nineteenth century, Oliver Wendell Holmes, ST.,a physician and poet among other talents, felt that “for polite society the sight of the odious pegleg is simply intolerable.” The man knew how not to pull punches. “Misfortunes of a certain ob-trusiveness may be pitied,” he wrote, “but are never tolerated under chandeliers.”

  When I talk to nondisabled people, they mostly identify me according to their learned and largely unthought-about attitudes and definitions. My physical disability, blindness, dominates and skews the ablebodied person's process of sorting out perceptions and forming a reaction. The relationship is often strained because of fear, pity, fascination, revulsion or merely surprise, none of which is easily expressed within the constraints of social protocol. Should the nondisabled person offer assistance? Acknowledge the disability? What language or expectation should he use or avoid? For my part, am I only or mostly my disability? Are other attributes worth checking out? Should I attempt charm or deference or humor? It's a stressful situation for both parties. Still, disability happens. It is not an aberration, it's a reality, not an anomaly or abnormality, and it is always complicated to face others with these masks, pretenses, repressions and blurs that influence if not totally define communication between us.

  The human body is seen as a visib
le expression of human virtue. Different bodies, ugly bodies still signify unhealthy spirits, but now there are ever more possibilities for bodily transformations, including decircumcision and the creation of more appropriate genitalia. Passing from one group into another, from unacceptable racial origins or unacceptable disease into “normalcy,” from the blatant vanity of nose jobs and tummy tucks to lifesaving grafts, the transformation of human bodies from bad to good, sick to healthy, unwanted to prized, is more deftly accomplished than ever before.

  The philosopher Isaiah Berlin liked telling the story of Charles Steinmetz, the hunchback inventor, walking past Temple Emanu-El on Fifth Avenue with Otto Kahn, the assimilated Jewish financier. Kahn said, “I used to attend services there.” Steinmetz replied, “I used to be a hunchback.” Being a Jew was like being a hunchback, Berlin would say, with each Jew reacting differently to his hump, some pretending they had no hump, others glorying in theirs, while a third group, the timid ones, wore cloaks to conceal their contours.

  In reminiscing about old times, a friend who had been connected to the original 1960s movers and shakers in the independent living movement in Berkeley remarked that most of them, having been paralyzed by polio only, were very attractive people. “I wonder,” she said, “if the movement would have been as successful as it was if folks with gross deformities had tried to organize and to attract outside attention.” Beauty is treated preferentially. Having it and flaunting it makes it easier to find sex partners, employment, more lenient sentences, helping not only to propagate the species but to ensure an easier life.