Disability: The Good, The Bad and The Ugly

Marcy Sheiner

In the central building at the condo complex where I live--the place where residents pick up packages and where film screenings, classes and Superbowl parties happen--a wheelchair ramp was just last month installed. The complex has been around for over thirty years, and the Americans With Disabilities Act (ADA) went into effect over ten years ago--yet it took a lawsuit by one individual homeowner before the building association put in the ramp.

Every civil rights movement in America endures a long and arduous struggle; for people with disabilities the issues are more complex than for most marginalized groups. This summer, celebrations of the ADA'S tenth anniversary took place in cities all over the country; here the ADA torch was carried across the bay from San Francisco to Oakland by the Bay Area Association of Disabled Sailors. Mayor Jerry Brown handed the torch to Debra Kaplan, Director of the World Institute on Disability, who relayed it to a lineup of people of all ages, sizes, colors and abilities. Each person briefly held the torch, while in the background the Olympian theme music played and onlookers cheered. It was, as Lily Tomlin would say, a "goosebump experience."

Torch-bearer Victor Aguilar, who was born with cerebral palsy just one year after the ADA went into effect, was excited to be part of the relay, but added, "Why should I celebrate if I'm excluded wherever I go?" His mother echoed the sentiment, pointing out that inaccessibility is still far too often the case--in the notoriously inaccessible Oakland Schools, for instance, and even at the YMCA.

As evidenced by the belated ramp in my own backyard, vast numbers of public and private facilities throughout the country remain inaccessible. And though wheelchair access is the most visible and pervasive issue, it is not the only issue.

The Legal Battle

Disability Rights Advocates (DRA) in Oakland was founded by Sid Wolinsky in 1993; the firm employs ten lawyers and has a sister office in Hungary. DRA filed several lawsuits against the Oakland School District before finally reaching a settlement a year and a half ago; a plan is now in place to make all the schools in the district accessible. Other school districts sued by DRA include Mount Diablo, which responded not only by improving access, but also implementing staff sensitivity trainings and augmented communications systems for those who need them. In May DRA will go to trial with a class action suit filed against San Francisco State University by over 300 students and staff with mobility and vision disabilities. According to Wolinsky, SFSU is one of the worst universities in the country, with pervasive physical barriers to entrances, classrooms and other pathways.

Nationally, DRA represents 17 disability organizations in a movement to get reparations for disabled holocaust survivors. A New York court recently ordered The Swiss Bank to pay a quarter of a million dollars to individual holocaust survivors, including people with disabilities. The case is now in the claims process, and it will be several months before anyone knows just how many disabled survivors even exist. What is known, and has been documented in horrifying detail by DRA, is that the Nazis perpetrated terrible crimes against people with disabilities, the second largest group of holocaust victims. If any money remains after individual claims are settled, DRA is proposing they be used to set up a world foundation for people with disabilities&emdash;not only does no such foundation exist, but many philanthropic organizations, such as the Ford Foundation, do not, as a matter of policy, fund disability groups.

In Sacramento, DRA is suing the city for inadequate curb cuts; nationally they're suing UPS for their failure to accommodate deaf employees; a successful lawsuit against Macy's spawned more suits against retailers, including Mervyn's and JC Penney.

DRA sued Kaiser for not providing quality medical care for people with disabilities and are developing a handbook and trainings for people with disabilities regarding health care rights. They're gearing up for a lawsuit against the California schools regarding standardized testing, which hurts people with learning disabilities.

Historical Perspective

Until about two minutes ago, people born with physical or mental deviations from the norm were viewed as shameful, even sinful. They were frequently locked up in mental asylums or other institutions, or kept hidden in the family attic. Nothing I say here is an exaggeration: throughout history, the lives of people with disabilities have been nightmarish. Think of any social issue and then inject disability into the picture: white slaveowners routinely murdered disabled African-American babies; the Nazis refined the techniques they later used in the Holocaust by first experimenting on institutionalized people with disabilities&emdash;with full cooperation from the German medical community.

Such abuse is, unfortunately, not entirely in the past. Compulsory sterilization of people with disabilities was outlawed in the United States in the 1950s, but is still practiced in Austria and in some parts of Switzerland. Not too many years ago a deaf man in Alabama was shot dead by a man who became alarmed by his unfamiliar hand gestures. In some places autistic students are administered shock treatment and other severe punishments for "acting out," with the result of at least one documented death. In Minnesota, a counselor at an institution for the mentally retarded doused a resident's genitals with industrial cleanser because he found the man "annoying."

More than two-thirds of disabled people who are willing and able to work are unemployed. Twenty-five percent of disabled people and their families live in poverty.

Social Attitudes

It's a truism that social attitudes lag behind legislation; the latter eventually spurs change in the collective consciousness. In my lifetime I've seen the visibility of people with disabilities increase dramatically, due largely to changes in the law. As we become more accustomed to seeing and interacting with people with disabilities, our attitudes will hopefully continue to shift.

Disability Studies covering history, civil rights and other relevant issues are popping up on some college campuses. Such a program has even been developed for middle school classes in Berkeley.

Publications like WE and Ability include articles on fashion, accessible restaurants, hotels and theme parks, disabled sports figures, and book and film reviews. (I was hard-pressed, however, to locate any of these in the East Bay; even Cody's didn't carry them on my last visit.) These magazines aren't altruistic endeavors: corporate America has discovered a lucrative market, one that can only increase as the baby boomers age. The growing number of disabled people, and the improved products available to them, translates into advertising dollars. Thus, these magazines contain ads for sleek new wheelchairs and other specialized products; but they also carry advertising for investment brokers, travel agents and SUVs. Perhaps most significant, a recent issue of the New Yorker carried an ad for New Halls Wheels featuring Franklin Delano Roosevelt, who was rarely photographed in his chair while in office, sitting in one with a dog.

Just as it's no longer acceptable to tell racist jokes, certain words--like the noun form of "retard"--are no longer publicly acceptable. And yet, on a personal level, most "temporarily able-bodied" folks rarely if ever mingle with disabled people. Let's be honest: it's no mean feat to talk to someone with cerebral palsy who appears to be in pain (they're not), whose limbs and head flop around, and whose slow speech is difficult to decipher. Unfortunately, most people don't see any reason to break through their own limitations and communicate with people with disabilities.

As Cheryl Wade, an activist and performance artist notes, "We live in an extremely shallow society in which the thin and hard is revered. But we are weird and flabby and drooly and spazzy. If we embrace our strangeness we have something to offer, but not if we downplay it."

Disability Culture

Wade most certainly does not downplay her own "strangeness." A poet and performance artist who's lived most of her life with rheumatoid arthritis, she's the starring actor in Disability Culture Rap, a video that won first prize in last year's Superfest, an annual festival of films by and about people with disabilities.

"I want my art to be so powerful," says Wade, "that someone who doesn't give a damn about disability comes to see me because I'm good, and goes away with a new consciousness about disabled people."

In fact, it's here in the arena of arts and culture where you'll find the cutting-edge of the Disability Rights Movement. People with disabilities have always been used for entertainment&emdash;but in the not-too-distant past they were exploited as sideshow "freaks." Thankfully, these are a dying breed: one of the most successful sideshow performers, Frieda Pushnik, a limbless woman, recently died at the age of 77. Nowadays performance artists, painters, writers, photographers and filmmakers are producing work about the disabled life that isn't presented for shock value, but is often startling.

Take David Roche, who calls himself "Reverend of the Church of 80% Sincerity. As a result of treatment for childhood cancer, one side of Roche's face is striated with dark purple burn marks, his chin is crooked, his teeth have fallen out, and his mouth is only half there. Rather than hide in shame, Roche has made his face the centerpiece of a comedy routine that's propelled him into places as high up as the White House. One of his projects is an annual appearance at a junior high school, where kids learn that it's not a disaster to look "different."

Neil Marcus, who's had dystonia since the age of eight, scored an acting part on television's "ER" a few years ago, playing a genius with cerebral palsy who is assumed by the staff to be homeless and inarticulate. "As little as ten years ago," he says, "they would have hired a non-disabled actor who would act disabled."

Marcus was "discovered" by ER's Anthony Edwards while performing his show "Storm Reading" under the auspices of Access Theater, which produces plays by and about people with disabilities and on whose board Edwards served. "It satisfies something in my rebellious nature," says Marcus, "to be seen acting in this spastic body."

Ricardo Gil is a photographer who's been documenting the life of his family; he and his wife are both dwarfs who have a normal-sized daughter. His work has been exhibited, along with that of other disabled artists, by Integrated Arts, a Berkeley organization. IA is currently coordinating a mural made up of 500 tiles, each produced by a person with a disability, which will be installed at the in-progress Ed Roberts Campus in Berkeley.

This handful of artists represents only a tiny part of disability culture. Dance troupes, acting companies, travelling exhibitions, anthologies and books that finally tell the truth about disability, have sprung up all over the place. Although Superfest began over thirty years ago, back then the films it showcased tended to be produced by "experts," rather than by the disabled themselves, and revolved around subjects like how to tie your shoes. The 2000 festival, by contrast, included films that dealt with disabled runaway teens, family conflicts, and a documentary about the movement to get names and dates put onto unmarked gravesites of previously institutionalized people.

Superman in a Wheelchair

Just as Rock Hudson raised AIDS awareness to a whole new level, when Christopher Reeve became paralyzed as a result of a riding accident, public awareness about disability issues was heightened. Reeve has done an incredible service to the community by speaking honestly about his condition and funding research into spinal cord injuries. On the other hand, some disabled people see his focus on finding a cure, rather than accepting the validity of life in a wheelchair, as damaging.

Nonetheless, Reeve has demonstrated that people can and do live rich, satisfying lives despite mobility impairments. The entertainment industry, however, still lags behind in portraying such lives: ER's Dr. Kerry Weaver, who uses a crutch that is seldom referred to on the show, is a notable exception. Advocates say the 54 million Americans with disabilities remain television's "invisible minority"&emdash;not even included in the networks' diversity initiatives of the past year, which covered only ethnic minorities.

Technology's Impact

Assistive technology has literally revolutionized the way that people with disabilities communicate, get around, and express themselves. Immobilized artists paint by voice; ditto for writers. The Internet has spawned a vast network of websites, chat groups and listservs where disabled people communicate with one another, obtain information, and organize for civil rights. The everyday lives of ordinary people with disabilities have been improved by technology, which is often subsidized and available even to low-income people.

But technology has also created ethical dilemmas for people with disabilities. Early detection of abnormalities in utero means more terminated pregnancies&emdash;a rarely discussed aspect of the abortion issue: even some anti-abortion people are silent about it. According to Gallup polls, a majority of Americans say abortion should be legal when there's evidence that the fetus is mentally or physically impaired. I know a woman whose son has spina bifida, and who was visited by a pregnant woman who'd just discovered her child would be born with the same condition. After spending a few hours with my friend and her son--a very hip, high-functioning teenager who zips around in his wheelchair--she decided to have an abortion, a decision that devastated my friend.

The right-to-die movement is similarly fraught. Cheryl Wade's response to the attitude that people with certain levels of disabilities be allowed to die is an angry poem called "Not a Reason to Die." "I'll be damned," she says, "if I'll let anyone judge this life as not quality."

Accessible public transportation has improved tremendously in the past two decades, due in part to the efforts of ADAPT, which previously stood for Americans Disabled for Accessible Public Transit. During the early 80s, ADAPT took to the streets and blocked buses in cities across the U.S. to demonstrate the need for access to public transit. Many went to jail for the right to ride.

Once accessible public transportation became a reality, ADAPT shifted its focus and name, becoming Americans Disabled for Attendant Programs Today, which works to keep people out of nursing homes and other institutions, to divert those funds into home attendant care. The group is behind the

Medicaid Community Attendant Services and Supports Act (MiCASSA) introduced to Congress in November 1999.

Berkeley: Mecca for People With Disabilities

It's no accident that Berkeley is the hub of the disabled community. By all accounts, a pivotal figure in the disability rights movement was the late Ed Roberts, who registered at UCLA Berkeley in 1967. Because he required use of an iron lung for many hours a day, Roberts was housed on an empty third floor wing of the college's Cowell Hospital. Word got out about his unique arrangements, and soon a dozen students in wheelchairs were living in the hospital and attending classes. The "Rolling Quads," as they called themselves, demanded access to buildings and classrooms, set up a wheelchair repair shop on campus, lobbied the Berkeley City Council for curb cuts, and founded the Center for Independent Living, the first agency to treat disability as a civil rights issue. CIL was to become the prototype for other agencies around the country, and Ed Roberts was eventually named by then-Governor Jerry Brown as director of the California Rehabilitation Department.

People with disabilities flock to Berkeley. Cheryl Wade came to attend college in 1977; in her one-woman show, "Sassy Girl," she describes the ecstasy of rolling down Telegraph Avenue for the first time and becoming so overwhelmed that she had a full-blown panic attack. She was rescued by an orange-haired, Stetson-hatted woman in a purple wheelchair who handed her a joint and said, "Welcome to the community of crippled women with attitude."

Backlash

You wouldn't think that Americans would be so mean-spirited as to object to improving the lives of people with disabilities, but there's actually been a backlash, particularly towards special education. TV news programs have repeatedly highlighted the "special attention" given to disabled students, slanting their stories to make it look as if non-disabled students suffer at their expense. They'll show, for instance, the rare student who's somehow finagled private jet service, and juxtapose it against a lack of textbooks in the school she attends. Or they'll portray classes where disabled students receive extraordinary one-on-one tutoring while the next-door classroom teems with neglected kids. If such situations actually exist, they're the exception; ask any parent of a student with a disability. Too often "special education" means throwing the learning disabled, wheelchair users and retarded kids into a room for one period a day where one overworked teacher roams around helping them with their homework.

Why then the backlash? Cheryl Wade says it comes down to personal attitudes. "We're still in the stranglehold of the medical model. We're not seen as people with rights but as people with needs."

The Future

With a conservative administration about to take power in the White House, there's reason to fear that some of the gains made by the Disability Rights Movement will be reversed. Wade is not so worried: although Bush's support of privatized Social Security is scary, she doesn't see it getting past a divided Congress. "We won't see significant change," she predicts. "I don't see any progress happening, like implementing legislation such as MiCASSA. I expect the status quo will just creep along for the next four years."

Not that Clinton's reign was so progressive: one of his last acts in office was to bail out the financially strapped nursing home industry. "Liberals aren't always better than conservatives," Wade notes, "but liberals do feel they have to help those they see as less fortunate. Conservatives believe in pulling yourself up by your bootstraps. Well, you can't pull yourself up by your bootstraps if you don't have feet."

Whatever happens in electoral politics, given that people are living longer and will inevitably increase the disabled population, the grassroots movement will continue to grow. Wade envisions a day--not in her own lifetime, but some day-- when people with disabilities will no longer feel ashamed of their conditions. "Older people with disabilities have to help younger ones feel pride," she say. "Pride means accepting your life--not that pain or disability is good, but that it's not shameful. It's just another kind of life experience. That schools are no longer segregated is a big deal, and we haven't seen the fruit of that yet. These days kids have snazzy wheelchairs, sports, art, leaders--they'll feel different than I did growing up."