A People's History of the Independent Living Movement

by Chava Willig Levy


Fighting the Good Fight

In the 1980s, sit-ins are no longer in vogue. But the fight for dignity and equality has continued quietly. The issues still include housing, employment, attendant care, education, social and sexual equality, health insurance coverage, and media portrayals. But nowhere has the fight been more glorious than on the airplane and on that metaphor for freedom, the bus.

Transportation: One If By Land, Two If By Air

Sharon MistIer, currently Director of Independence Center of Northern Virginia, recalls her attempt to board an airplane bound for Hawaii in 1967. She was off to see her husband who, after serving for 8 months in Vietnam, had been granted a week of R & R. Taking note of Mistler’s wheelchair, the airline agent told her she was not permitted to board unless she traveled with an escort. Mistler tried logic; she tried emotion; nothing worked. She watched as her fellow travelers prepared to board the plane. One was a young man in uniform. MistIer went up to him and quickly explained her absurd predicament. The soldier promptly agreed to be her escort. Together they beat the system.

Twenty years later, the system has changed for the better. Nevertheless, airlines still discriminate against people with disabilities. The National Federation of the Blind is particularly irate about seating and boarding restrictions blind passengers often endure (Jernigan, 1987). Wheelchair users face similar obstacles; they are often told that their motorized vehicles constitute a safety hazard, even when their batteries contain no acid.

In 1986, Congress passed the Air Carrier Access Act, mandating that airlines may not discriminate against disabled people. To get the expertise of all interested parties, the U.S. Department of Transportation decided to conduct regulatory negotiations. In attendance were representatives from government agencies, the airline industry, and disabled organizations. The group as a team was to draft the regulations; without them, as in the case of Section 504, the Air Carrier Access Act would be meaningless.

The group assembled in May 1987. At the end of November, negotiations broke down. The disabled representatives walked out when the Federal Aviation Administration withdrew from consideration issues relating to exit row seating. They considered it a show of bad faith, especially since the group was about to vote on these issues.

As of this writing, the Department of Transportation (DOT) is drafting the regulations in-house, trying to include as many points as possible over which there was consensus. Sharon MistIer, appropriately a negotiations participant, comments, "The problem is: What does DOT perceive as consensus?" She and others are waiting for the imminent release of the regulations. Before they are promulgated, DOT will invite comments from the disabled communty.

Back on the ground, the bus has become, for the second time in American history, the focal point of a civil rights struggle. Idealism, so elusive in the 80s, was never more apparent than in these two heroic incidents:

Big Doings in the Big Apple

On September 30, 1981, Denise McQuade, currently Executive Director of the Brooklyn Center for Independent Living, took a stand -- or one might say a seat -- to force the NYC Transit Authority to operate the wheelchair-accessible buses it had already purchased. For months, these buses were riding the streets of New York. The lifts, however, were motionless, because the Transit Authority wanted to wait until a larger proportion of the buses could accommodate commuters with disabilities. McQuade, in collaboration with the Eastern Paralyzed Veterans Association's Mobility Through Access, insisted that specific routes be chosen on which the lifts would operate. She feared that if these delays continued, winter would come, and when the lifts were finally put in service, very few people would be waiting in the streets to use them.

An Action Day was planned. McQuade approached a Manhattan bus at 12:30 p.m. and asked to board. The driver said, "I can't operate the lift. I don't have the key." Instantly, she transferred from her wheelchair and sat on the bus step. She responded calmly, "Then please call your supervisor and get one."

Passengers were furious. Keeping her cool, she told them, "This is a one-time inconvenience for you; it is happening because of a major and persistent denial of rights for us." A crowd gathered, including CBS TV reporter Arnold Diaz. Finally, the police arrived. "What are you doing?" they asked. "I want to get on the bus." There was an awkward pause. Then McQuade said, "If you want to arrest me, go ahead. But I am not moving."

Hours later, Transit Authority officials came by with a special vehicle. "Here," they said, "we'll take you wherever you want to go." "You're missing the point," McQuade replied. "I want to ride this bus, just like anyone else." As daylight faded, someone offered her a soda. She took a sip and then stopped. Turning to her associate, she said, "If this doesn't get resolved soon, we're going to have to buy a bedpan!"

Finally, at 7:00 p.m., the authorities showed up with a key. As the crowd cheered, McQuade boarded the bus. It took 2 minutes. McQuade's thoughts at that historic moment? "I remember thinking, 'I must have the GM logo imprinted on my behind!"' As the bus proceeded along Broadway, "I felt ecstatic. I never expected this to happen in my lifetime. It was an act of desperation, and it made a difference."

Making a Difference in Denver

When disability rights activist Mark Johnson got married in 1981, he and his wife moved to Denver. Soon thereafter, he and his van were in an accident. Johnson was forced to use public transportation. He discovered that accessible buses comprised only a fraction of Denver's transit system.

This sequence of events coincided with two others: Reagan's move to the White House and Johnson's acquaintance with Denver's Atlantis Community, a radical ILC founded in 1975 by Reverend Wade Blank and Barry Rosenberg. Over the next 2 years, Johnson became increasingly committed to the struggle for wheelchair-accessible buses. He learned that 2 years after the 504 regulations were signed, DOT mandated that all new public buses had to be accessible; 51% had to be accessible by 1990. But in 1979, the Supreme Court ruled (Davis v. Southeast Community College) that admitting a deaf practical nurse to a registered nurse program constituted "undue hardship" for the college. Using that ruling as a precedent, the American Public Transit Association (APTA) promptly sued DOT, claiming total access was an undue hardship ("That means," Johnson says, "'We're all for equality but it costs too much.").

APTA lost the trial but won on appeal. "Then came the Reagan Administration and the 'local option' concept," says Johnson. "Suddenly, each transportation authority could choose the form of transportation it deemed best that is, what it could get away with."

James J. Weisman, Program Counsel, Eastern Paralyzed Veterans Association (EPVA), an expert on the fight for accessible transportation, explains what happened next:

DOT's new regulations, issued in 1981, simply said that transit operators receiving federal funds had to make "special efforts" to serve elderly and disabled people. All you had to do to get those funds was state in writing that the transit authority did and would continue to make special efforts for these constituencies. In theory, the operators were supposed to follow through. In practice, merely filing the piece of paper satisfied the regulation. Most operators opted for [segregated] paratransit. The cost was minimal but service was so ineffective; its effect on the disabled population was so insignificant as to be meaningless.

In Denver, members of the Atlantis Community discussed civil disobedience. Johnson recalls, "I was asked, 'Are you in, Mark?' I was." The group disrupted the Denver Transit Authority's administrative offices. Johnson chained himself to a railing and got arrested. Ultimately, Denver responded to the Atlantis Community's pressure. In 1983, Bob Conrad coined a name for the group: ADAPT (American Disabled for Accessible Public Transportation). Johnson and his colleagues began coaching others nation-wide to stage similar protests. "We saw APTA as one of our major problems. We wondered where their next convention might be. Lo and behold, it was Denver!"

Seventy-five ADAPT activists presented a statement and introduced a resolution at the APTA convention. It included a stirring role play (ADAPT, 1983):

NARRATOR: We are going to take you back in time to prove that history does indeed repeat itself. [Holds up sign: MONTGOMERY, ALABAMA 1955]

BLACK MAN: Does this bus stop at Fifth and Lincoln?

BUS DRIVER: It sure does, but you ride in the back, boy.

NARRATOR: [Holds up sign: CHICAGO, ILLINOIS 1983]

DISABLED PERSON: Does this bus stop at Fifth and Lincoln?

BUS DRIVER: It sure does, but we don't take cripples.

APTA demonstrations became an annual event. A near-coup came in 1986 when civil rights heroine Rosa Parks accepted and then declined ADAPT's invitation to lead its Detroit march. According to Johnson, Mayor Coleman Young put pressure on Parks to withdraw her support. Her letter explained that the march would embarrass the city and disrupt bus service. ("And what, pray tell, did the freedom riders do?!" Johnson asks.)

Some disagree with ADAPT's radical approach. Still, by 1987, ADAPT could draw a crowd of 600 demonstrators in San Francisco. Johnson sums up his colleagues' sentiments this way: "Blacks were tired of riding in the back of the bus; disabled people are tired of not riding the bus at all."

Fellow Travelers

The struggle for disability rights is a journey still in progress. And the bus ride is only one aspect of that journey. Along the road toward equality, many have joined the march who appear not to belong. They are the non-disabled.

History is loaded with tales of people who championed the cause of people with disabilities. But, by and large, these individuals assumed a caretaker role (Gini Laurie and Mary Switzer are rare exceptions). No matter how well-meaning, they were fighting for those with disabilities, not with them.

Two who Have Joined the Fight

The newcomers to the fight see themselves as partners in, not leaders of, the IL movement. Dr. Gerben Dejong, Director of Research, Economic, and Public Policy at Washington, D.C.'s National Rehabilitation Hospital and a seminal thinker for the movement, was drawn to it, because he, "as an immigrant who struggled since childhood to assimilate, could relate to disabled people as a disenfranchised group." In 1976, when he was project director of an attendant care study at Brandeis University, Dejong's research was supervised by the Interagency Council on Independent Living, an amalgam of consumers and agencies in Massachusetts. "Comprising 40 - 50% of that council," he recalls, "were people with disabilities. They were my overseers, not my clients or patients."

"Then in 1977, the 504 regulations were promulgated. I was looking for a dissertation topic; I settled on a history of the Independent Living movement." Ever since, while chronicling the movement from political and sociological points of view, Dejong found himself "taking my cue from disabled constituents. I never presume to speak for the IL movement. I integrate -- not parrot -- what others say, using an academic filter."

Mary Johnson is another non-disabled chronicler of the IL movement. Her filter is perhaps less academic than Dejong's, but her message is equally cogent. It appears in The Disability Rag, a bimonthly magazine that has enchanted and enraged its readers, sometimes simultaneously, since Johnson founded it in 1980. The Rag elicits many reactions, but boredom is not among them. A public relations professional, Johnson knew nothing about disability or disability rights when a chance encounter in the mid-70s changed her life. Attending a party in Louisville, Kentucky, she met a woman who had a disability. "I actually had never met a disabled person before. Before the party was over, she had opened my eyes to the discrimination those with disabilities face their lack of access to housing, transportation, employment, and so much more. This was news to me; and I considered myself well-educated and liberal!"

Johnson learned that her new acquaintance was starting a group in Louisville called ALPHA (Action League for Physically Handicapped Adults). When asked to serve on its board, Johnson agreed. "I wanted to educate the public, not the disabled. That's what led me to establish and edit The Rag."

Here's how I see it: Very few things are certain in life. Death is inevitable; and almost as certain is that everyone will experience disability. Men aren't going to become women; whites aren't going to become black. But chances are everyone at some point will know disability first-hand.

Johnson's concern is that society refuses to acknowledge this. "Society has a huge defense mechanism protecting it from what it sees as an uncomfortable, terrifying reality. Dealing with that terror is vital to the future of America and the world, second only to fighting the threat of nuclear annihilation."

Like Dejong, Johnson maintains it is not her job to present solutions to or for the IL movement. "My job is to expose the issues. Solutions are in the hands of the disabled community."

Not everyone likes what The Rag exposes. When disabled readers accuse her magazine of being too bitter, Johnson comes to its defense. "Some of our critics are missing the point. They think, "We’ve got hand controls; we've got it made.' But they forget how many people in their forties are still trapped in nursing homes or living with their parents, when that need not be the case. It's a tragedy for strong passions to go unrecorded; there has to be a medium through which the public can learn what those passions are."

The Controversy Over Consumer Control

Few would deny the contribution made to the IL movement by non-disabled activists and intellectuals. Still, many are keeping a watchful eye on their role for fear that the fine line between collaborating and caretaking will be crossed. Judy Heumann put it this way: "We are looking to take away power from non-disabled leaders and put it into disabled people's hands. Otherwise, the myth of the hopeless, helpless cripple will persist. In Germany, in fact, the disability rights movement does not permit non-disabled people to join. I, for one, support this principle. We should stop apologizing for wanting power."

That power is ensured through consumer control, achieved when over 51% of an ILC's board of directors and staff have disabilities (Frieden, 1983; Kailes, 1985). Based on the ILRU Research and Training Center on Independent Living's 1986 survey of independent living programs, Director of Research Margaret Nosek estimates that over 70% of the approximately 350 programs providing IL services are consumer-controlled.

Separate Caravans

The struggle for power has resulted in factions within the disability rights movement. Most see differences of opinion as a sign of the movement's growth. But differences based on disability affiliation are a source of great concern. Zola (1982) asserts that:

Groups organized along a single disease or disability [have] a long history but they [are] a mistake both therapeutically and politically. Therapeutically ... it has led [people] down a no-win game of trying to find someone with exactly the same experience. Since no one really is the same, it has led to an emphasis on differences rather than similarities.

Politically, it has led each disease group... to fight for its own piece of the pie, to make them pit their disease as more tragic, more deserving than some other, to have them gain a specific privilege for one group, and to thus ignore their common disenfranchisement and their common oppression. (pp.4-5)

The National Federation of the Blind's fight for equal access to air travel has perpetuated the kind of schism Zola deplores. Kenneth Jernigan (1987), NFB's executive director, has espoused a separatist viewpoint that concerns many who are otherwise supportive of his organization's struggle with the airlines. His assertions, featured in a two-page ad in the Wall Street Journal, illustrate that separatism:

Prior to the 1970s, blind people almost never experienced problems in air travel ... Then, something happened. Ironically, it was caused by the increasing emphasis on affirmative action for the handicapped. One would have thought this would have been a positive step, but it wasn’t -- at least not for the blind ... (The airlines) began by lumping all of what they perceived to be handicapped together -- wheelchair users, the blind, the deaf, the quadriplegic, the cerebral palsied, and everybody else they could think of...

In the mid-1970s there was talk of limiting the number of handicapped people who could ride on the same plane at the same time and whether it made sense for anybody at all, it certainly didn't for the blind. Nevertheless, just because we were perceived as part of the "handicapped," we were caught in the net and included. (p.20)

Discussing the airlines' affirmative action policies at the 1987 National Conference on Independent Living's "Flying the Friendly Skies" session, Jim Gashel, National Federation of the Blind's director of communications, said it more succinctly: "Include us out." Possibly because the room was filled with wheelchair-users, audience reaction was decidedly cool.

Emerging Issues

NFB's separatist viewpoint notwithstanding, the 1980s have brought the IL movement a sense of unity that crosses disability lines. A new culture has emerged, one in which people with disabilities no longer avoid each other for fear of being lumped together by the non-disabled world. Most recently, the movement has embraced those with cognitive and psychiatric disabilities. It is intent on demolishing barriers within and beyond the disabled community.

Gerben DeJong thinks the 1990s will bring these questions to the fore:

How to get these and other questions on the national agenda is the movement's constant challenge. For activists like Marca Bristo and Michael Winters, the political process is the only way to go.

Bristo, executive director of Chicago's Access Living and president of the National Council on Independent Living (NCIL), sees the formation of a strong political base as the IL movement's #1 priority. "The disabled community must become more galvanized, more organized. We need to broker just as other groups broker. We're not a group needing services; we're a constituency demanding rights."

Winters, director of Berkeley's Center for Independent Living (CIL), serves on the platform committee of California's Democratic Party. As chair of the health committee, he is fighting to create a national health insurance program that would cover treatment, equipment, and services. "The situation is getting pathetic; we've become a society of have's and have not's. Using the political process is the only way for people with disabilities to become part of the power structure."

When asked what other issues cry out for legislative attention, Bristo replies, "Let me count the ways!" Topping Winter's list is:

These are only a few of the issues the IL movement will tackle as the 1990s get under way.

EPILOGUE: Isn't This a Time?

I went for a jog in the city air.
I met a woman in a wheelchair.
I said, "I'm sorry to see you're handicapped."
She says, "What makes you think a thing like that?"
And she looks at me real steady
And she says, "You want to drag?"

"Talking Wheelchair Blues," Fred Small

Precisely 11 years ago as of this writing, the San Francisco 504 sit-in was in its seventeenth day. Across the country, disability rights activists were drunk with euphoria; they had become a force to be reckoned with.

Wasn't that a time? The movement was in its glorious heyday. Everything seemed possible, the sky was the limit, "We Shall Overcome" was the theme.

Since the victories of 1977, the journey toward independent living turned into a rollercoaster ride, proceeding in a predominantly downward spiral. After making so many gains, disability rights activists watched the Reagan Administration slash federal spending for social service programs that had made their movement viable. The door had been shut, and one might have thought that the disability rights movement would have shut down with a whimper.

But as this conservative decade comes to a close, we see a rekindling of the pluck with which the IL Movement began. One no longer needs to look wistfully to the past to gain hope and renewal. The present has generated enough energy to propel us into the new decade with great expectations. In the last 10 months alone, a series of startling events, ranging from the ridiculous to the sublime, prove that this is so.

Playboy and Liberation: Strange Bedfellows

When it hit the stands, the July 1987 Playboy Magazine may have raised a few more than the usual number of eyebrows. But throughout the disability rights network, it caused an uproar. The issue's centerfold featured semi-nude photographs of Ellen Stohl, a California college student who gets around in a wheelchair. She was the first disabled woman to be accorded an honor considered dubious by feminists, controversial by most others.

The New York Times covered the story under a stirring headline: "Disabled Model Defies Sexual Stereotypes" (Cummings, 1987). The Disability Rag featured articles and letters about this phenomenon for three consecutive Issues. Both periodicals alluded to ironies in this Playboy "breakthrough."

Many believed Ms. Stohl had received a left-handed compliment. When asked why she posed for Playboy, she replied, "I realized I was. . .a woman. But the world didn't accept me as that" (Cummings, 1987, p.12). Many saw her letter to Playboy's publisher Hugh Hefner, requesting that she be featured in a photo layout, as an odd plea: "Please don't treat me as an asexual object; treat me as a sexual object!"

Playboy's associate editor Kate Nolan was quick to point out that the feature was not such an earth-shattering advance for the emancipation of people with disabilities, since Ms. Stohl "looks like everybody else. We're still saying, if you don't look like everybody else we're not putting you in the magazine" (Cummings, 1987, p.1).

Looking on the bright side, one could conclude that Ms. Stohl's feature shattered the myth that disability and deformity must go hand-in-hand. The next step, which hopefully will occur in life rather than Playboy, is to demonstrate that deformity, like disability, has no devaluing effect on sexual appeal.

Mr. Dart Goes to Washington

Thirty-five years earlier, another disabled undergraduate broke with the conventions of his time. His name was Justin Dart. While fellow students at the racially segregated University of Houston concentrated on panty raids, Dart established the campus's first Integration Group. The numbers were against him; 5 out of 15,000 students became members. Dart was unperturbed; his goal was social justice, not popularity.

As 1987 drew to a close, Dart took another stand that countered the protocol of his surroundings. This time, the setting was not the college campus but the Congress of the United States (Connell, 1987).

Appointed Commissioner of the Rehabilitation Services Administration (RSA) by President Reagan in 1986, Dart believed his mission was "to execute America's statutory and moral obligations toward citizens with disabilities." But when he tried to implement that mission, he met with resistance. He felt frustrated, for example, when his efforts to fill RSA vacancies with disabled professionals proved unsuccessful. His request to organize public forums on the proposed Rehabilitation Act amendments was overruled. "Influenced by Jefferson, I believe in participatory democracy," Dart explains. "But my boss, Assistant Secretary of Education Madeleine Will, a passionate, tenacious advocate for citizens with disabilities, has a more centralized management style."

Testifying at a House oversight hearing on November 18, 1987, he chose to scrap his prepared text, approved by his superiors, and to make a statement of conscience:

We are confronted by a vast, inflexible federal system which, like the society it represents, still contains a significant proportion of individuals who have not yet overcome obsolete, paternalistic attitudes about disability ... There is a resistance to any sharing of their centralized authority with people with disabilities, their families, advocates and professional service providers. Good management is too often subordinated to the protection of power... At issue here are... the civil and basic human rights of people with disabilities to have more than rubber-stamp figurehead representation in government.

Within a week, after consulting with appropriate government officials, Dart decided to resign. He left his post on December 15.

As in the Ellen Stohl controversy, Dart's gesture was applauded by many and condemned by others. Call it courage, call it irresponsible nonconformity. The question of who was right or wrong seems less relevant than the fact that Americans with and without disabilities witnessed an event, recorded for posterity in the Congressional Record, that shattered myths about the correlation between weakness and disability.

The Civil Rights Restoration Act

In March of 1988, Congress was again the scene for disability rights history in the making. After a 4-year struggle, the House and Senate reversed the effects of a Supreme Court ruling that had weakened civil rights enforcement. They passed the Civil Rights Restoration Act, overriding President Reagan's veto by large margins. The new law ensures that "Federal anti-discrimination statutes apply to an institution in its entirety if it accepts Federal aid for as little as one program (Molotsky, 1988, p.1)." Before this victory, a university, for example, could receive government funds for its science department, make its science facilities accessible, but keep its library, cafeteria, and dormitory inaccessible.

Disability rights activists condemned that inequity as an intolerable travesty of justice. Under Marca Bristo's leadership, the National Council on Independent Living (NCIL) conducted a national letter-writing campaign in 1987 to urge passage of the Civil Rights Restoration Act. In May of that year, Senator Edward Kennedy, the bill's co-author, captured the urgency of this fight, when he made an informal appearance at NCIL's legislative reception. He told his audience how the day before, till well past midnight, his committee had "marked up" the bill so that the full Senate could vote on its passage. An opponent had complained, "We've been waiting for hours. It's late; can't this wait till tomorrow?" Kennedy stood up and said, "There are people with disabilities right outside our door who've been waiting almost 4 years for this bill!''

Ten months later, the waiting was over. During that same victorious March of 1988, others who had known prejudice firsthand decided they had waited for justice long enough.

The Gallaudet Uprising

Robert Ruffner (1988), President of the American Association of Disability Communicators, reports that it began as a local story buried in the Metro section of February 23rd's Washington Post. Noting that Gallaudet University, the nation's only liberal arts college for the deaf, was about to select a new president, columnist Dorothy Gilliam wrote:

Hiring a hearing-impaired president would make a great statement to people who are handicapped... that disability will in no way disable them from attaining their goals and that our democracy is rich enough to afford the diversity. My own view is that from great institutions great things are expected. Wouldn't it be great if Gallaudet rises to the occasion?

The University let the opportunity slip through its fingers. On March 6, its board of directors selected a hearing president, Dr. Elisabeth Ann Zinser, the only finalist who was not deaf (Williams, 1988). The next day, over 500 students and alumni protested, shutting down the Washington campus. By March 9, half of Gallaudet's faculty had sided with the students, voting to demand Dr. Zinser's resignation (Ayres, 1988). By March 11, Dr. Zinser resigned, stating, "I have responded to this extraordinary social movement of deaf people" (cited by Ruffner, 1988). Two days later, Dr. I. King Jordan, the deaf dean of Gallaudet's college of arts and sciences, was selected to replace her (Ayres, 1988b), and Jane Bassett Spilman, the chairwoman of Gallaudet's board who was quoted as saying that "deaf people are not ready to function in a hearing world," relinquished her position.

The Gallaudet uprising electrified the American people. On its first day, students asked passing motorists to blow their horns to demonstrate solidarity with the cause at hand. Response was "spotty," but by day three, "the blare of car horns was constant" (The Washington Post, quoted by Ruffner, 1988). The New York Times and Washington Post carried daily and prominently positioned updates. ABC News anchor Peter Jennings named student organizer Greg Hlibok as "Person of the Week."

Most important, the Gallaudet victory forced America to see the irony of a "place that boasted of a special ability to train deaf people for the working world but itself refused to hire a deaf person for its top job" (Ayres, 1988c, p. 2). It forced us to examine the painful reality that there exists in the world, as Judy Heumann puts it, "a systemic, deep-seated discrimination against people with disabilities." It allowed us to discover in just 7 days that it doesn't have to be that way.

Today, Heumann is co-director (with Ed Roberts) of the World Institute on Disability. Its mission is to take the revolutionary ideas of Berkeley and Gallaudet to all the inhabitants of our planet. Some say it can't be done. But others beg -- no, demand -- to differ.

Our faith cries out: We have no fear!
We dare to reach our hand
To other neighbors far and near,
To friends in every land.
Isn't this a time?
Isn't this a time,
A time to free the soul of man?
Isn't this a wonderful time?

"Wasn't That a Time," The Weavers


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