Welcome to Post-ADA America. We hope you’ve enjoyed your flight. Before leaving, please be sure to check the area around your seat for any civil rights or scraps of human dignity you may have managed to keep us from stealing. Thank you for flying with us — and remember, if you feel your rights have been violated, you’re required by law to wait 90 days before suing us. Have a nice day.
The death of the Americans with Disabilities Act–if it is in fact dead–did not occur suddenly. Rather, the Supreme Court has subjected it to the judicial equivalent of the Death of a Thousand Cuts. No single ruling by the high court could be considered fatal, but cumulatively they–especially in the sections of the ADA pertaining to employment–have narrowed the scope of the act so drastically that only a small number of the estimated 54 million disabled Americans remain covered. As Sarah Triano, an advocate with Access Living Chicago and a person with an immune-system disorder, says, “I’m not even protected by the ADA anymore.”
So far, Title III of the ADA–which requires access to public accommodations such as restaurants, stores and movie theaters–has escaped the Supreme Court’s attention. Here, however, it’s the United States Congress that seems eager to put on the executioner’s hood. In February 2000 the so-called “ADA Notification Act” was tossed into the congressional hopper, and it has been reintroduced in the current session. Under the Notification Act, a person with a disability wishing to file suit against an inaccessible business will have to wait an additional 90 days to do so–presumably to give the ghosts of Christmases Past, Present and Future enough time to visit the business owner and shame him or her into rushing to comply with a law that has already been on the books for 13 years.
“I don’t think we dare let any more [ADA] cases come before this Supreme Court,” says Lucy Gwin, editor of Mouth magazine. For over 10 years Gwin’s rousing, in-your-face style has typified the magazine she calls “The Voice of the Disability Nation”–yet when asked if the ADA is dead, she answers with an unqualified yes. “It’s unenforceable. … That’s no law at all.”
When I think about what has happened to the ADA, I feel angry. And dejected. And betrayed.
Like a lot of people with disabilities on July 26, 1990, I felt a huge sense of triumph when I heard the act had been signed. I was too young to have taken part in the disability rights struggles of the preceding two decades, but each of the movement’s victories had affected me profoundly. After sixth grade, thanks to the Individuals with Disabilities Education Act, I had the right to graduate from a segregated “special” elementary school into the same junior high that my brothers and sister had attended. My parents bought me a membership in the California Association of the Physically Handicapped (now known as Californians for Disability Rights), and when the organization’s monthly newsletter arrived in the mail, I’d devour every word of it. I wrote letters to my city councilman demanding curb cuts in my neighborhood so I could wheel to the corner store. When disability activists occupied the San Francisco offices of the U.S. Department of Health Education and Welfare to demand implementation of Section 504 of the Rehabilitation Act, I cheered them on–and when a 1979 Newsweek article described disability as America’s next great civil rights movement, I spent an entire lunch period in the school library looking for a copy of it. Times were changing, and even my pimply 14-year-old self felt like a part of it.
In high school and college my interest in disability rights waned (replaced by sex, beer, science fiction and punk rock, in no particular order) but it never completely faded. When deaf students at Gallaudet University took over the campus in 1988 to protest the appointment of a non-hearing-impaired chancellor, I felt a certain amount of pride even though I’m not deaf. And in July 1990 that pride all came rushing back. To this day, I still can’t look at that photo of Justin Dart looking over President Bush’s shoulder without getting goose bumps.
When I think about the years since that photo was taken, however, I end up asking: What the hell happened?
And then: Where the hell was the disability movement while it was happening?
Anger is like fire. Unchecked, it can burn you up from the inside and then destroy everything around you. But, channeled and controlled, it can become a useful tool–or a powerful weapon. I’ve decided to channel my anger into finding out why the disability movement never achieved the critical mass expected back in the 1970s. There’s no way a single magazine article can provide an in-depth historical analysis of the disability rights movement–and no one without a Ph.D. in history would want to read it anyway –but it can ask some important, outside-the-party-line questions:
Could the disability rights movement have done more to protect the ADA?
Are we up to the task of salvaging what’s left?
Do we need to start thinking beyond the ADA and finding new ways to bring about equality and inclusion for people with disabilities?
In these post-ADA, post-Sept. 11, civil-rights-averse times, is it all our movement can do simply to keep from becoming irrelevant?
The Media Miss the Message
“The biggest problem,” says Cyndi Jones, “is that the movement isn’t moving.”
I’m sitting with Jones and her husband, Bill Stothers, at a cafe next door to the San Diego offices of the Center for an Accessible Society–a national organization designed to focus public attention on disability and independent living issues. It’s in a quaint old part of town, whose Victorian and Craftsman houses are largely inaccessible but whose sidewalks–most of them, anyway–have curb cuts.
If anyone can help me find some answers, these two can. It was they–as the editors of Mainstream–who gave me some of my first assignments as a freelance writer, when no one else was buying stories about disabled people who weren’t climbing El Capitan or pimping for Jerry’s Kids.
I start the interview with the question of the day, the same one I asked Lucy Gwin: Is the ADA dead?
“No,” Stothers says. “I don’t think it’s dead. Everybody focuses on the court rulings, but the fact is that access is happening.” Although disability rights laws from the ADA on down remain underenforced, equality and integration for people with disabilities have slowly percolated through the larger culture–particularly when it comes to public facilities. In the United States, a disabled person will encounter many more ramps, accessible restrooms, Braille signage and closed-captioned television broadcasts in an average day than they would in comparably wealthy countries such as France, Germany, the United Kingdom or Canada–no matter how much more socially progressive those nations may otherwise be. “There’s this change of attitude that’s more powerful than the law itself,” says Jones, “and that … is what causes things to happen.”
Signs of this attitudinal shift have also appeared even in organizations usually viewed with suspicion by disability rights activists. While the Jerry Lewis MDA Telethon still draws protests, and MDA itself has come under fire for alleged discrimination (see News, August 2003), groups like United Cerebral Palsy, the National Multiple Sclerosis Society and the American Diabetes Association have quietly included civil rights issues among their traditionally medical, research-and-treatment-oriented concerns. Says UC San Francisco historian Paul Longmore, Ph.D., “If you go to their Web sites, you’ll find sections that address issues of public policy that don’t have to do with medical research, but have to do with civil rights, [as well as] information about individuals confronting prejudice and discrimination.” What’s more, he adds, the last 13 years have seen a marked change in the American people’s expectations for the role people with disabilities play in society. “They expect to see people with disabilities participating. … They’re shocked and appalled when they learn about work disincentives. They support us, and when things are reported to them, they agree with us.”
The problem is, so many of the issues facing us–the reasons that we need an ADA in the first place–have gone unreported. We haven’t insisted that they be reported. The campaign for the ADA’s passage is notable for its lack of any attempt by the disability movement to engage the media or public in the debate surrounding it, or in any broader discussion of disability rights and what they might mean for American society. You’d think that a movement so grounded in the ideals of previous civil rights struggles would have recognized the crucial importance of public support and sympathy; yet in our case, disability activists preferred to work behind the scenes with elected officials and did not seek the attention of the voters who elected them. “Most other civil rights legislation has come with broad, deep public support,” Stothers says. “People demanded that it happen–they saw those police dogs chasing [civil rights workers] in Alabama and there was outrage. That’s never happened with disability.”
According to Mary Johnson–editor of Ragged Edge, co-director (with Jones and Stothers) of the Center for an Accessible Society, and author of Make Them Go Away: Clint Eastwood, Christopher Reeve and the Case Against Disability Rights–the lobbyists working on Capitol Hill perceived, correctly, that it would be easier to sell the ADA directly to Congress without getting bogged down in lengthy public debate or dealing with the media. “As a short-range ‘get a law passed’ strategy it was very good,” Johnson says. “But … in the long term you create a backlash when you don’t get the public on board with you. The epigram that begins my book says it all for me: ‘A law cannot guarantee what a culture will not give.'”
If a Congressperson submitted a bill in the House requiring African-Americans to wait 90 days before suing a business for race discrimination, the airwaves and op-ed pages of the nation would instantly be filled with calls for his or her political head. Earlier this year, gay and lesbian activists were highly vocal in their denunciations of Sen. Rick Santorum for remarks that they perceived as anti-gay. So why hasn’t the disability community mounted a similar response to attacks on the ADA? In the words of Bob Dole, where’s the outrage?
“We don’t publicize our programs, our ideas,” Johnson says. “Over and over again, I come back to that as our essential problem. The public only knows about the disability rights movement from the high-profile stories by the likes of John Stossel–they think it’s a bunch of whiny opportunists complaining about every little thing and refusing to take responsibility. … We [could] show them that disability rights is about helping everyone to get the access and accommodation they need to live a decent life. But we don’t frame things like this. We could, we should. But we don’t.”
We don’t connect with other crips, either. For me, the idea of my disability as a political and not just a medical issue took hold early on–but my experience is the exception that proves the rule. According to Longmore, the majority of disabled Americans “never got politicized about disability.” That would certainly explain why, more often than not, when I first meet other people with disabilities and use names or concepts that folks in the movement take for granted–Section 504, IDEA, ADAPT, even New Mobility–they’ll give me the blankest of blank stares.
Says Johnson, “Wade Blank [the founder of ADAPT] many many years ago made a point about how the way to get new people into a movement was to do things publicly that would draw people to you.” If more disability rights groups took this approach–filing high-profile suits against inaccessible businesses, holding press conferences constantly, engaging in the sort of confrontational street theater for which ADAPT is well-known–“folks would start knowing about disability rights and … some young folks–the ones who have an activist bent–would start coming forward.”
In Gwin’s opinion, the disability community should replicate the consciousness-raising sessions that formed the foundation for the modern-day feminist movement. “The women’s movement jumped on those–there was this huge buzz around the country because women were running off to meet other women … talking to each other about their civil rights for the first time in history. This is the kind of person-to-person organizing that we have to do now.”
It sounds good in theory. But it also makes us sound as if we’re stuck in the ’60s. The leadership of the disability movement is not getting any younger–either it brings in some new blood, or it eventually becomes extinct. If we shut out everyone not old enough to remember Woodstock, how do we expect to attract the Warped Tour crowd?
People like Sarah Triano are just the type of up-and-coming leaders that the disability movement needs. As one of the founders of the National Disabled Students Union, Triano has worked to mobilize young people with disabilities on college campuses around the country. She, too, sees a desperate need for consciousness raising within the disability community: “The greatest obstacle [we] face today is our own sense of internalized oppression and shame. What good is an ADA, an IDEA or a Section 504 if people with disabilities are too ashamed to even admit they have a disability?” Socialized by nondisabled society to think of themselves as worthless, many disabled Americans are too demoralized to lay claim to the legislated rights they already have. “I call it cultural terrorism–that’s what’s been inflicted on us.”
However, any outreach to young people with disabilities is going to have to come from young activists. Within the disability movement there persists a wide–and often unacknowledged–generation gap. “The first centers for independent living … were started by very young activists,” Triano says. “But they’ve aged. And the view is that as you age you get more conservative . … A lot of the students in the NDSU don’t see [older] leaders with disabilities as very radical.”
vOn the other side, movement veterans often view younger generations–X, Y, Z, whatever–as either unaware or unappreciative of the effort and risk that went into earlier disability rights battles. “A lot of young people seem to assume that they will have the same kinds of life opportunities as their nondisabled peers,” Longmore says. “I think they will, at some point, hit a glass ceiling, and I hope that that will politicize them.” As someone who falls in the middle of this generational divide (either a young Boomer or an old GenXer, depending on where you draw the line), I suspect that the mistrust on both sides is at least partially justified. But when it comes to the issue of consciousness raising–or lack thereof–the argument is also irrelevant. By definition, the disability community is cross-generational, and no one age group holds a monopoly on apathy and ignorance. If we truly want the disability movement to be more than a historical flash-in-the-pan, we ultimately must set aside these kinds of differences and figure out how to mobilize our people across the board–with new perspectives, new ideas, and a renewed sense of our own unity.
Lights, Camera …
It’s also no longer enough to confine our activities to the courts, the CILs, and the marble-lined corridors of policy wonkdom Disabled people “have too long relied on courts to provide fundamental human justice, and not enough on popular action to demand it,” says Marta Russell. The author of Beyond Ramps: Disability at the End of the Social Contract, Russell has written extensively not just on disability rights, but on labor issues, radical politics and the impact of economic globalization. “After the Supreme Court showed its colors regarding employment, for instance, we should have [demonstrated] against Toyota, Chevron, every corporation that displaced a disabled worker instead of making reasonable accommodations.”
That kind of high-visibility, in-your-face action requires media savvy and the ability to mobilize large numbers of people–qualities that the disability rights movement has sorely lacked. Of the established disability organizations, only ADAPT has made street protest a regular part of its modus operandi–and while it typically stages at least two demonstrations a year, the number of attendees seems to have plateaued and the actions rarely make more than a brief blip on the media’s radar screen.
Of course, part of the problem with mobilizing the disabled masses is a logistical one. It can be just plain hard for a person with a disability to travel from one city to another. Finding accessible transportation and lodging, arranging for attendant services on the road, dealing with broken wheelchair parts or sudden medical emergencies–all of these things can frustrate the hell out of just one disabled individual. Multiply them by seven figures–for a “Million Crip March” on Washington, D.C., say–and you have a logistical nightmare of apocalyptic proportions.
For this reason, some in the disability movement have begun to emphasize smaller-scale action at the local level over big, splashy–and overly ambitious–national spectacles. “You have to mobilize people locally–this is how democracy works,” Gwin says. “You can’t do it from a sitting position at home in front of the television. … People have to see the faces of their organizers.”
Johnson agrees. “Our real strength is in the grass roots. We need to do local stuff, constantly and consistently, that gets ordinary people to understand that they have [rights]. If we can do that consistently … getting ourselves into the public eye as a local movement that benefits everyone, we will be doing a heck of a lot.”
Whether it’s local or national, mobilizing effectively is going to require each of us to recognize the common ground we share with those whose disabilities are different from ours–in other words, no more griping from us wheelchair users about how people with hidden disabilities aren’t “really disabled”–and with other communities working to achieve their own civil rights goals. During the 504 protests, the people occupying HEW received active support from African-Americans, gays and lesbians, organized labor–all of whom recognized that they were fighting the same basic battle. But now, after two decades’ worth of “identity politics” (also known as “multiculturalism,” “political correctness” and “I’m a bigger victim than you are”), the civil rights landscape is as fragmented as a map of the former Yugoslavia. “Identity politics means that groups compete for ‘our’ agenda or ‘our’ piece of a reduced pie, whether economic, social or political,” Russell says. “What we need to do is demand a transformation that delivers a different pie–one big enough for all of us. … We do not need to abandon ‘our issues’ but we do need to integrate our struggles with other struggles.”
That’s not easy to do, though–not when “progressive” organizers shut out people with disabilities by holding events at inaccessible venues, or disability activists pepper their discussions with racist or homophobic jokes that drive away interested people from other communities. “The disability rights movement can’t be insular,” Triano says. “We have African-Americans, we have women, we have gays and lesbians already in our movement … [but] I don’t think there’s enough coalition building.”
British folk singer Johnny Crescendo–a polio survivor active in the disability movement in the United Kingdom–once said that there can be no integration without power; once we have power, we can choose to integrate with whomever we want. However, doesn’t it also work the other way? If we separate ourselves from the larger community, how can we possibly attain the power?
History Never Ends
A few years after the ADA became law, I attended a disability event in Los Angeles. Billed as a “Chautaqua,” the event was designed to bring disabled writers, artists and activists together to exchange ideas and educate ourselves about the experience and culture we had in common. One of the projects was a detailed timeline of important events in the history of disability. Some–such as the 504 protests–were well-known to me, while others–such as the turn-of-the-century “Ugly Laws” in Chicago, which barred people with visible physical deformities from going out in public–came as a shock. The timeline began in Biblical times and continued across the millennia to July 26, 1990–where it abruptly stopped. As if getting the President to sign his name to a piece of paper were the pinnacle of what we could hope to achieve.
At the time I thought to myself, “What self-congratulatory bullshit! Yeah, we got a law passed, and that’s great, but that’s not the end of it. We’re sitting here patting each other on the ass like football players who’ve just scored a touchdown, and meanwhile the rest of the game is being rigged against us.”
In retrospect, I probably overreacted. But then 1994 came around–the year of the Gingrich Revolution, the “Contract on America,” and the first of many vocal attacks on the ADA from the media and the halls of Congress. The ensuing backlash against disability rights did not come as a shock to everyone. Says Longmore, “I had expected it long before it finally did occur”–but the movement as a whole was utterly gobsmacked by it, and it has never regained its momentum.
So maybe I wasn’t overreacting after all.
On the other hand, the African-American civil rights movement didn’t end with Martin Luther King Jr.’s “I Have a Dream” speech. It didn’t begin there, either–nor did it begin with Rosa Parks, who had received intensive training as a civil rights organizer long before she refused to give up her seat on that bus. There’s something to be said for the old saying about what happens when the going gets tough.
“This is the best time [for the disability movement] to be relevant,” Jones says. “When things are easy, you get complacent. When things get difficult, that’s when you need to come out and fight. … But that means you have to go out and do the organizing. It’s not going to get any easier in 50 years.”
Nor is the battle going to go away–not in 50 years or a century. That’s the tragic burden accepted by anyone who believes in civil rights: Whatever your vision of equality looks like, chances are that you won’t live to see it. Sometimes change happens with surprising swiftness, sometimes it becomes glacial, stops or even moves backwards–but one human lifespan is never long enough. True success, then, comes in taking a view that transcends generations and laying the foundation for a movement that will outlive all of us.
The timeline never ends. Not unless the world ends with it.
The Paradox of Activism
By Tim Gilmer
There was a time, not so long ago, when it seemed that disability activism was as simple as, “Ask, and you shall receive.”
I had been using a wheelchair since 1965. After 10 years of not being able to enter public buildings in cities as large as Los Angeles or towns the size of Ashland, Ore., not being able to enjoy the luxury of accessible restrooms nor park within easy rolling distances of public events, my repressed anger was ready to channel into activism. When I saw the TV news report of disabled activists occupying the Health, Education and Welfare building in San Francisco, I realized it was our turn.
In 1975, getting around the campus of Southern Oregon State College–built on the side of a mountain–was next to impossible. Students using wheelchairs drove from one class to another. There was no handicapped parking, no disabled students office, no elevators in older buildings, zero awareness.
As an older returning student (30 years old), I felt I could talk to faculty and administration bigwigs as an equal, sensibly. I knew, for instance, that the cost of putting elevators in every older building on campus was prohibitive, but there was no reason why they couldn’t handle one or two elevators per year. In the meantime they could reschedule classes when a student lacked access. Now we call it “reasonable accommodation.” Then it was simply the right thing to do, and few opposed it, knowing that to do so would be considered the wrong thing to do. Now, since the battlefield is the courtroom instead of the civil arena of everyday behavior, the name of the game is to seek legal loopholes to escape doing the right thing. Legal means have a way of being considered legitimate, no matter how uncivil.
The hillside terrain on campus couldn’t be changed, but disabled parking spaces could be put behind each building, and certainly a disabled student services office could be established to legitimize our needs, including dispensing elevator keys so disabled students could use existing elevators not intended for public use. But the biggest problem, then as now, was lack of awareness, which, as I came to realize, stemmed from a form of negligence: Many people were simply unable or unwilling to consider the disability-based point of view.
To make our needs known, a number of us organized and held a conference on campus. SOSC was small, and our gimp club was perfectly representative–one from each disability group. We invited the local press, the college radio station, administration officials, faculty and other interested people. To our surprise, more people came than we expected. Soon our mini-movement spread from the campus to the city. Before we knew it, we were lobbying for parking spaces, better access and increased awareness throughout Ashland. Next we formed a chapter of the Architectural Barriers Council and linked with other chapters throughout the state. As leader of the group, I decided to film a documentary to capture it all, which I hoped would be a powerful statement in itself.
It was exciting, making demands that had been too long in coming and seeing immediate, mostly positive results. Local newspapers became interested in my personal story as well as the larger story for which I had become a symbol. When the phone rang, it might be someone wanting to interview me or someone wanting to join our cause. All it took to gain attention was to speak out–everything else seemed to fall into place automatically.
In the mid-1970s people knew in their hearts that those of us with disabilities were the neglected minority, and they seemed almost eager to admit it. There was little opposition because we were not viewed as a political force. We were not powerful enough to cause problems. But a lot of people in positions of power were beginning to check their budgets and question how doing the right thing could be economically feasible.
In those early days of disability activism, I began to realize I had something to lose as well as something to gain. Increasingly, I was becoming known only as someone who had an agenda. I was the guy who had been denied for too long. I was the one in the news who was complaining about unmet needs. I was the wheelchair guy, the guy who was beginning to fit neatly into the latest stereotype. I began to feel a little like the stick figure guy on the parking signs that were going up everywhere.
Complete strangers would come up to me and offer to push me or open a door or tell me how wonderful it was to see me “out,” as if I had been chained in a dark dungeon for decades like a shameful family secret. Increasingly, I began to feel that who I was and what I really wanted in life had somehow been pushed into the background. I was busy–going to school, working as a graduate teaching assistant for the English department, organizing and speaking out–too busy even to finish my documentary film project. Before I knew it I had earned my master’s. It was time to take my place in society as a working, taxpaying citizen. I landed a job teaching writing classes at a community college, and my brief sojourn in the world of disability activism ended.
Now I had what I wanted–a chance to participate in society on an equal basis–or so it seemed. I was assigned to a campus that was almost entirely accessible, that had an active disabled student services office. They even paid me to counsel disabled students as well as teach writing classes.
One day, while counseling a newly injured 18-year-old para who reminded me of myself as a young man, tears sprang to my eyes. There I was, sitting with a young man who needed encouragement and help, who was struggling with his new body, his new life that he had no choice but to accept, and I, his counselor, was the one who was about to break down and cry.
The next day I told my supervisor that I wasn’t prepared to be a counselor. They had made me a counselor of disabled students because I was easily identifiable by my own disability–and because of my recent history: I was the wheelchair guy. And because I had taken a couple of counseling classes, they figured I was qualified. But I had never intended to be a counselor. I was a writer who intended to make a living as a writing instructor, not a counselor.
In seeking to influence public awareness, I had crossed over an invisible line. On one side of the line I could be my private self, but once I crossed into the public domain I became a symbolic figure, and people automatically assigned me to the compartment that society reserves for us: the disability shelf. Any and all matters relating to disability–that was where I belonged. It didn’t matter what my personal goals were or what I was qualified to do.
I had discovered the cost of activism, the paradox. Those of us who call attention to our disabilities in order to publicize the needs of the group to which we belong must pay a price. In seeking societal independence and freedom from restrictive stereotyping, we unavoidably sacrifice personal independence and individuality. The more we seek to break free from an outdated stereotype, the wider the stereotypical net stretches. At first we were seen as meek, polite, unfortunate cripples seeking what was rightfully ours. After activism became radicalized, the stereotype grew to include pushy, rude, ungrateful cripples demanding more than they were entitled to. It seems we are either one or the other.
In truth, we are neither. And that image is almost impossible to project. Who we really are is not an image at all. The general public must be made to understand that each type of disability is different, and that each person within each disability type expresses who he or she is differently. We are individuals who share certain needs. Maybe the best way to get that idea across is to invite people, organizations and businesses into our lives, to let them roll a mile in our chairs, rather than put them on the defensive with demands and threats. If activist groups can figure out how to do this, people may just start doing the right thing again.
And if they don’t? Sue the bastards.