A People's History of the Independent Living Movement
This information is available in PDF format upon request.
Levy, C. W. (1988). A people’s history of the independent living movement. Lawrence, KS: The Research and Training Center on Independent Living, University of Kansas.
Abstract
The start of the independent living movement may have been when Mary Switzer was appointed director of the Office of Vocational Rehabilitation that typically provided rehabilitative services to 10,000 persons with disabilities a year. Switzer set a goal to provide services to 250,000 citizens a year, and her philosophy shaped the Vocational Rehabilitation Act of 1954, which poured funds into research and direct services. Around the same time, Gini Laurie started as a home-grown newsletter that became the Rehabilitation Gazette or, as Laurie called it, "independent living by mail.” One of its readers was Ed Roberts who advocated for disability rights at University of California at Berkeley and helped establish the Disabled Students' Program on campus. In 1973, at Roberts' urging, Judy Heumann, who had been active for disability rights on her campus, came to Berkeley to help lead the new center for independent living there. The 1970s also was the decade when disabled activists held sit-ins at federal buildings in 10 cities across the country to demand that the 504 regulations be signed into law.
The regulations were signed, but in the conservative atmosphere of the 1980s, many thought the battles that marked the early days of the IL movement were a thing of the past Then, on September 30, 1981, Denise McQuade, executive director of the Brooklyn Center for Independent Living, protested in New York City to force the NYC Transit Authority to operate the wheelchair-accessible buses it had already purchased. Mark Johnson and others protested the Denver Transit Authority and coached others nationwide to state similar protests. In 1983, Bob Conrad coined a name for the Denver group: ADAPT (American Disabled for Accessible Public Transportation). Observing from academia, Gerben DeJong found himself using an academic filter to chronicle the goals of the independent living movement in the 1980s. Mary Johnson, nondisabled chronicler of the independent living movement, founded The Disability Rag, a bi- monthly activist magazine, in 1980. Marca Bristo and Michael Winters, Berkeley Center for Independent Living, believed the political process is the best way to accomplish independent living goals. Said Bristo, executive director of Chicago's Access Living and president of the National Council on Independent Living: “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.” Other stand outs include Ellen Stohl, Playboy Magazines first centerfold with a disability (July 1987), Justin Dart, Rehabilitation Services Administration protester, and Gallaudet University students who rejected a non-deaf president.
RTC/IL Monographs in Independent living is published by the Research and Training Center on Independent Living (RTC/IL), The University of Kansas. Copyright 1988 by Research & Training Center on Independent Living, Dole Human Development Center, 1000 Sunnyside Avenue Room 4089, University of Kansas, Lawrence, KS 66045-7555, Voice: (785) 864-4095, TTY:
(785) 864-0706, Fax: (785) 864-5063.
“Wasn't That a Time,” by Lee Hays. Quoted with permission. “Talking Wheelchair Blues,” by Fred Small. Quoted with permission. Funds for publication of RTC/IL Monographs in Independent Living were provided, in part, by a grant to the RTC/IL at the University of Kansas from the National Institute of Disability and Rehabilitation Research (NIDRR), grant #GO08006928.
Dedicated to the memory of Edmee Rodriguez, President of the Board of Directors, Brooklyn Center for Independence of the Disabled, 1947-1988. Rodriguez, pictured to the left, was a gentle warrior in the struggle for independence and dignity, whose goodness, grace, and glow will endure in the hearts of all who were privileged to know her.
Acknowledgements: First and foremost, my thanks go to Susan Elkins, Publications Coordinator at the Research and Training Center on Independent Living at the University of Kansas, for offering me the opportunity to research and write this people's history of the independent living movement. It was a privilege to create this document, and it was a privilege to work with her. This monograph could never have come to fruition without the anecdotes and insights willingly offered by luminaries in the independent living movement, including Marca Bristo, Justin Dart, Diedre Davis, Gerben DeJong, Judy Heumann, Mark Johnson, Mary Johnson, June Kailes, Gini Laurie, Denise McQuade, Sharon Mistier, Margaret Nosek, Mary Jane Owen, Ed Roberts, Maggie Shreve, Jim Weisman, and Michael Winters
I also wish to thank Marie Shear for acquainting me with Fred Small's Talking Wheelchair Blues. And many thanks to my wonderful parents for encouraging me to write and for teaching me from the beginning that disability is not tragedy. Last, but certainly not least, I extend deepest gratitude to my husband Michael Levy, whose support during this project was indispensable.
About myself: I, Chava Willig Levy, am a New York-based writer, editor, lecturer, trainer and communications consultant, founded Lucidity Unlimited, a communications productions company. My published works have appeared in several books (including The Complete Guide to Employing Persons With Disabilities) as well as The Ladies' Home Journal, Savvy, Family Circle, and McCall's.
Introduction: Wasn't That a Time?
Our fathers bled at Valley Forge. The snow was red with blood;
Their faith was warm at Valley Forge.
Their faith was Brotherhood.
Wasn't that a time? Wasn't that a time,
A time to try the soul of man? Wasn't that a terrible time?
“Wasn't That a Time,” The Weavers
Part of what keeps America alive is her ability to recall. Even though we were not there, we all know stories about Valley Forge, Gettysburg, and Selma. When we hear or relate these stories, both listener and teller are enlightened, even energized by them. Without those stories, American history — and American pride — wouldn't be the same. America needs her stories.
This monograph contains stories that should make America proud. They are stories of the independent living (IL) movement and its leaders, dedicated to the notion that people with disabilities: belong in the community, not the convalescent home; are neither patients to be cured, children to be taken care of, nor brave souls to be admired; should be in charge of the assistance they may require, that is, free to be independently dependent; and are victimized by a prejudiced society, not the disabilities they happen to have.
Like all stories, these stories have heroes. (A hero in this context is someone who fights for equal rights and, in the process, makes a dent in history. The word is not used, as it often is in print and on film, to connote a “courageous cripple who threw away his wheelchair” or a “sightless wonder who actually graduated at the top of her class.”) Some of these heroes — Ed Roberts, Judy Heumann, Justin Dart and others — have appeared in newspapers nationwide.
Others are less famous. All of them made a dent in history.
A quick word about what this monograph is not: It is not an academic, all-encompassing history of the social forces (e.g., civil rights, self-help, and consumerism) that shaped the IL movement. Outstanding documents of this nature already exist, notably Gerben DeJong's ‘Defining and Implementing the Independent Living Concept” (1983).
In contrast, this is a people's history. Far from comprehensive, it explores human — rather than social— forces. It looks at who — rather than what — shaped the IL movement. It looks at a time when, in the words of Mary Jane Owen (1987):
People placed their lives and health on the line and believed the potential gains were worth the risks. That time must be remembered. The stories must be told.
Here are some of those stories. When you have read them, I hope you will say, “Wasn't that a time?”
In the Beginning
It's hard to fix an exact date to the birth of the IL movement. Many say the movement began on a day in 1962 when a man named Ed Roberts enrolled at the University of California at Berkeley. For reasons that will soon become obvious, Roberts is universally acknowledged as the father of the IL movement. Some are quick to point out, however, that if Roberts is the father of the movement, Mary Switzer and Gini Laurie are its grandmothers.
Mary Switzer: Pioneering Government Leadership
Mary Switzer began a distinguished career in federal civil service after graduating from Radcliffe in 1921. Disability awareness did not play a significant role in her early life. However, soon after arriving in Washington, she met Tracy Copp, an early advocate for people with disabilities. Their friendship prompted Switzer to say, “I'd like to get into this work if the chance ever comes” (Current Biography, January 1962, p. 42).
That chance did not materialize for quite some time. The first opportunity to become remotely involved in rehabilitation arose in 1934 when Switzer was appointed assistant to the Assistant Secretary of the Treasury in charge of the Public Health Service. Her expertise in health and welfare concerns grew during World War II when she worked closely with medical professionals.
Perhaps more than others, those in government service know that all things come to those who wait. In 1950, over 20 years after her first encounter with Tracy Copp, Switzer was appointed director of the Office of Vocational Rehabilitation (OVR). Established in 1920, OVR's results were modest in its first quarter century; on average, it rehabilitated 10,000 persons with disabilities a year. And its programs were limited to clients most likely to succeed; those with severe disabilities usually were denied services.
Switzer was the pioneer who saw injustice where others saw the status quo. Upon taking office, she commissioned a study that resulted in plans to expand the national rehabilitation program. The result: the unprecedented goal to rehabilitate 250,000 citizens a year.
Switzer’s philosophy shaped the Vocational Rehabilitation Act of 1954, which poured funds into research and direct services. Under her leadership, those services began to reach people with severe physical and mental disabilities, once considered "infeasible for rehabilitation.” What's more, Switzer refused to define the goal of rehabilitation as busywork or menial labor. She insisted that work meant “bringing the person to the highest and most productive place he can achieve” (Current Biography, January 1962, p. 43).
Accordingly, the Vocational Rehabilitation Act of 1954 stated that disabled persons were not considered rehabilitated until they were employed to their own satisfaction, not just their employers'. That policy was revolutionary, empowering people with disabilities to be partners in the decision making affecting their lives.
In 1967, Switzer became commissioner of vocational rehabilitation. When she retired in 1970, then the highest ranking woman in the federal government, she had taught millions that the community has a “moral responsibility to ensure that the opportunities our country gives generally to all of us be available, too, for those among us whose lives would otherwise be limited by physical disability” (Current Biography, January 1962, p. 44).
Gini Laurie: Powerful Grassroots Leadership
For Gini Laurie, unlike Switzer, disability was commonplace from the moment her life began. In 1913, one year before she was born, four of her siblings contracted polio. Two sisters died within months; one brother died of pneumonia at 21, years before iron lungs were available to combat pulmonary weakness.
Laurie remembers 1949 as the year polio began hitting adults. When the Red Cross called for volunteers to apply hot packs to patients in iron lungs, she offered her services. She got to know many polio survivors who expected, as their relatives and doctors predicted, to spend the rest of their lives in the hospital. There, it was assumed, the March of Dimes would pay for their attendant care. That assumption was only partly correct. There were 400 iron lung users nationwide, and the March of Dimes could not afford to serve them if they remained in dispersed locations. In 1950, it established 16 centers to serve 242 of these hard-hit polio survivors.
The remaining 158 lived at Rancho Los Amigos Medical Center in Southern California. Pressed for funds, the March of Dimes turned its care over to Los Angeles County. Then in 1953, the County conducted an attendant care survey. It learned that the 158 iron lung users could get attendant care and equipment maintenance at home for $10 a day; it cost the County $37 a day to provide identical services in the hospital. “This discovery,” says Laurie, “was the start of the independent living movement.” See Kailes (1985) for a slightly different account of this turning point.
Ultimately, until 1959 when they could no longer fund attendant care, local
March of Dimes centers also gave monthly stipends of $300 to polio survivors, enabling them to live outside the hospital. Meanwhile, the Salk Vaccine was perfected in 1955. Many forgot about those who had contracted polio. But Laurie, married and living in Cleveland, had maintained the link she had established as a child with this population. She determined that polio survivors needed two things: people and information. She then launched two projects: a newsletter (written in her dining room) and a lift-equipped swimming pool (built in her back yard). Both provided opportunities for networking.
“Someone would ask, ‘How will I ever get an attendant?’” Laurie remembers." And the answers would come pouring in, either around my swimming pool or in our newsletter: Go to a mental hospital to find a helper who needs help, too; move into a duplex house and offer free room and board in exchange for assistance; find an illegal alien; start a letter-writing campaign to your congressman.”
What started as a home-grown newsletter became the Rehabilitation Gazette or, as Laurie calls it, "independent living by mail.” The Gazette's writers were its readers, sharing tips with an audience that would soon become international. A subscriber in Michigan could confront the local Office of Vocational Rehabilitation (OVR) and say, “I read that so-and-so in Texas was sent for computer training. Why not me?” Laurie sums it up this way: "The Rehabilitation Gazette distributed knowledge, and knowledge is power.”
One of the Rehabilitation Gazette's earliest subscribers was a young Californian named Ed Roberts. Like Laurie, he contended that knowledge led to power. He became one of the most powerful forces in the IL movement. But in 1953, at the age of 14, power was a commodity Roberts never expected to possess.
A Metamorphosis That Made History
Roberts' earliest recollection of disability takes him to a day in 1946 when, like many 6- year-olds, he heard his father say, “Don't stare,” when a woman with cerebral palsy came into view. At 13, his prejudices against people with disabilities were well entrenched. At 14, he contracted polio.
Roberts reminisces, “I was a very independent kid; suddenly I became a patient. My mother was told I'd become a vegetable because of my high fever. The doctors told her it would be better if I died.
“Meanwhile, I was experiencing lots of self-hatred and powerlessness. I was a helpless cripple, dependent on an iron lung. I absorbed all the stereotypes: I would never marry, have a job, or be a whole person. I tried to starve myself the only way to commit suicide. In 7 months my weight dropped from 120 to 50 pounds.”
Fortunately, when the last home nurse quit, Roberts started eating again. Still, he stayed home for five years, afraid to be seen by those who had no disability, ashamed to be seen around those who did.
The turning point came when, after years of high school by telephone, Roberts completed his senior year. There was nothing left to do but get out of the house. “My worst fear came true,” he recalls. “Everyone stared. But that experience created a shift in my own perception: I could be a star, different in a positive way, not a helpless cripple. I decided if people wanted to stare, it was their problem, not mine.”
A mediocre student before the onset of polio, Roberts excelled over the telephone wires. “I began to realize that the key to power was education.” Ironically, his high school principal thought ignition was the key that mattered. He maintained Roberts couldn't graduate because he had not taken driver education. “You wouldn't want a cheap diploma,” he intoned. Roberts and his mother threw the principal out of the house.
With the help of a family friend on the community school board, Roberts got his diploma. “It was a very important fight for me because I won. I learned that you must fight for your own rights, no matter what people say. And I learned it's important to win when you fight, to find a way to make it happen, to turn to the media if necessary.”
Turning to the media became necessary two years after the diploma victory. California's Department of Rehabilitation, rejecting Roberts as “too disabled to work,” refused to sponsor his university education.
Roberts contacted the press. Within a week, the Department of Rehabilitation caved in. “Public bureaucracies have a lot of trouble with negative PR,” says Roberts. (Fifteen years later, he was appointed head of that very system.” Better watch out when you reject people; it may come back to haunt you," he remarks in retrospect.)
After earning an associate degree at the College of San Mateo, Roberts applied to the University of California at Berkeley. His application was accepted, but he was not. “We've tried cripples and it didn't work,” said the dean of students, explaining that there was no place on campus for a student with an iron lung to live.
Roberts spent much of his time on his back, but he did not take this verdict lying down. Finally, Berkeley's student health center director said Roberts could treat the campus's Cowell Hospital like a dormitory, coming and going as he pleased. John Hessler, Berkeley's second Cowell resident, joined Roberts shortly thereafter. Through California's Aid to the Totally Disabled program, they hired, trained, and fired their own attendants. They were independently dependent.
In his book The Hidden Minority (1979), Sonny Kleinfield writes, “They make revolutions in Berkeley.” As Roberts sees it, “I arrived just in time for the revolution.”
The revolution he was referring to, however, was not his own. Having known discrimination first-hand, Roberts became a civil rights activist. As the sixties progressed and Cowell opened its doors to more students with severe disabilities, it occurred to Roberts that blacks and other racial minorities were not the only groups that could fight the system. He and his peers at Cowell formed a group called the Rolling Quads. They began discussing ways to break the segregated, caretaker quality of life on campus.
One reflection of that quality affected Roberts' opportunities for romance. For years, he had been told he couldn't operate a motorized wheelchair; in Berkeley, he was pushed everywhere. Then he fell in love. It became inconvenient to have a pusher. In a day and a half, Roberts learned to navigate his own wheelchair. “It taught me the power of motivation,” he says. “She jumped on my lap and we rode off into the sunset.”
For less romantic pursuits, Roberts found there was strength in numbers. He and the other Cowell residents “began to entertain the selfish, ambitious hope that they could get out of the hospital and live like the able- bodied” (Kleinfield, 1979). They submitted a proposal for federal funding to establish a Disabled Students' Program on campus. In 1970, the program — and the revolution — got under way.
At the time, the program's philosophical underpinnings were revolutionary. Among them was a rejection of the medical model: If anything needed to “get better,” it was American society; if anybody should be in charge, it was not the doctor. People with disabilities, said the Berkeley group, were consumers, not patients. Like all consumers, they needed to select rather than settle.
The Program office was bombarded with consumers who wanted, among other things, to eliminate segregation from their lives. By 1971, off-campus consumers were a sizable proportion of those seeking services. The realization that nothing existed out there beyond the university walls prompted Roberts and his associates to establish a Center for Independent Living (CIL) for the community at large.
The particulars were hammered out for more than a year. The group was officially formed in 1972. A roach-infested two-bedroom apartment was found.............................. Dollars were dug
out of personal pockets, some benefit poker games were arranged, but not until July 1972 was the financial squeeze settled. The Rehabilitation Administration produced a grant for $50,000, enough to tide them over while other funds were secured. (Kleinfield, 1979)
The rest is history.
The Ripple Effect
Etymology (the study of word origins) can often supply us with profound insights. Take the word problem, for example. Funk and Wagnall's defines it as "a perplexing question or situation, especially when difficult or uncertain of solution," adding that its etymological root is problema, Greek for "something thrown forward (for discussion)."
When people are grappling with a problem, what they throw forward for discussion are possible solutions. Just as a stone thrown into a pool of water sends ripples outward from its point of impact, a successful solution triggers a ripple effect that ultimately has influence beyond its initial target (Levy, 1988).
It didn't take long for word of CIL's solutions to spread beyond Berkeley. By the mid- 1970s, Independent Living Centers (ILCs) had sprung up throughout California and in cities including Houston, Boston, New York, and Chicago. Finally, the motto of the sixties, "Power to the people," was beginning to apply to those who, according to most, were the epitome of physical, financial, and political powerlessness.
Simultaneous Struggles
It would be simplistic to attribute an entire movement to the goings-on in one college town. As Berkeley's ripple effect spread, news of similar and simultaneous struggles for equality and dignity reached the West Coast. A nationwide disability rights network was springing up.
Disabled Students' Program on campus. In 1970, Judy Heumann's final shift toward political activism took place at age 25. But by that time, the struggle for equality had been a part of her life for 20 years. Denied admission to public school because her wheelchair was "a fire hazard," she saw her parents fight that injustice for four years (Margold, 1981). Her first "victory" was switching from home instruction to a segregated health conservation class. She was the first "polio kid" in a class where the others, students with cerebral palsy, were not accorded great expectations. When she saw how little her teachers were
doing, Heumann began to teach reading skills to her classmates. She soon became her speech teacher's unofficial assistant. Years later, not surprisingly, she decided to pursue a teaching career.
Like Ed Roberts, Heumann knew education was the key to power. The first in her class to go to high school, she honed her leadership skills as president of her homeroom class. Then came college, where "everybody liked me, but still a barrier existed. Dates were unheard of. While feeling separate from nondisabled students, I felt a link with those who had disabilities. That feeling of community kept getting stronger. I realized that unity was essential, that we could accomplish more through group efforts."
There was a lot to accomplish at Long Island University. When Heumann made arrangements to live on campus, the dormitory director pressured Heumann's attendant-to-be to turn down her job. The attendant was told she'd be held responsible if Heumann fell. Incensed, Heumann called LIU's president and was admitted to the dorm. In the face of obstacles like these, Heumann and several others pressured LIU to establish its Disabled Students Program.
At 22, diploma in hand, Heumann applied for a New York City Board of Education teaching license. She passed the oral and written exams, but the Board declared her unqualified, because she failed the teachers' physical. The reason: She could not walk. A lawsuit followed; Heumann won the case and began teaching at her former elementary school.
All along, Heumann was studying voice and dreaming of a singing career. At 25, heavily involved in DIA, she had to choose between voice and disability rights. That choice created Heumann's final shift toward political activism. In September 1973, at Ed Roberts' urging, she came to Berkeley. She immediately joined CIL's board of directors; three years later she was hired as CIL's deputy director. She had chosen to become a passionate voice for disability rights.
In New York, California, and elsewhere, this grassroots phenomenon coincided with ground-breaking activity in the halls of Congress. Were it not for this juxtaposition of events, the IL movement might never have become a force to reckon with.
The Rehabilitation Act of 1973
In October 1972, Congress passed a rehabilitation bill that sparked jubilation among disability rights activists. That jubilation was short-lived, however, because President Richard Nixon promptly vetoed the bill.
Ten years earlier, the disabled community might have swallowed this bitter pill of defeat stoically. But revolution was in the air. Protests were staged across the country. In New York City, Heumann and 80 comrades held a sit-in on Madison Avenue, bringing traffic to a standstill (Ingram, 1981). Angry letters and demonstrators flooded Washington. Finally, Congress overrode Nixon's veto. On September 23, 1973, the Rehabilitation Act of 1973 became law.
Once again, jubilation was tempered with certainty that the battle had just begun. The new law was a meaningless piece of paper without federal regulations through which it — and particularly Section 504 of the law — would be enforced. Section 504 states:
No otherwise qualified handicapped individual in the United States shall, solely by reason of his handicap, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving federal financial assistance.
Eunice Fiorito, former director of New York City's Mayor's Office for the Handicapped, first president of the American Coalition of Citizens With Disabilities and special assistant to the Commissioner of the Rehabilitation Services Administration, recalls:
It was 1975 and there were no regulations. We proceeded then to come into 1976 and there were still no regulations, and therefore the law was not being implemented. [In 1977,] within two days after the Carter Administration was put into place, about 15 of us came to see Secretary [of Health, Education and Welfare] Califano, expressing our desire to work with him and his staff to get [the regulations] out in a reasonable period of time. We went back and forth to meeting after meeting in good faith. And we finally said to them, “Look, we have had enough. If you cannot come up with a decision, then we must take action.”
We gave them until the fourth of April. And on the fourth of April, they did not have the regulations ready for issuance. So we developed an alternate plan: to bring our plight to the attention of the [American] people. (Ingram, 1981)
Taking a Stand by Sitting In
On the fifth of April, disabled activists took action in 10 cities across the country. With reason to fear that the 504 regulations were to be rescinded, they staged sit-ins in federal office buildings. Their demand: the 504 regulations be signed into law. In most cities, the demonstrations were over by day's end. In the nation's capital, officials would not allow food and drink into the building, starving the demonstrators out. "But in San Francisco, [over 150] demonstrators stayed and stayed. They were not going to go away" (Ingram, 1981).
Mary Jane Owen (seen in photograph here) was there.
After sleeping the first night on the hard floors, mattresses were delivered from the supplies of the State Health Department. Food arrived from McDonald's, Delancy House's drug programs, the Black Panthers and Safeway. The Mayor himself scolded the federal officials for ignoring the needs of the uninvited guests and brought in shower attachments to be used in the tiled restrooms.
Some of us decided to call a hunger strike to confirm to ourselves and others our commitment to stay at any cost. There were so many [heroes] — Steve, who lay day after day and night upon night, [recording] events — because he knew what was happening was important enough to risk his health; Jeff, who . . . wrote new words for old civil rights songs with which we loudly greeted federal employees [each] morning; the deaf woman who entered the building to teach a class in sign language and stayed; the mentally retarded woman who always injected a note of realism into our too-abstract deliberations. (Owens, 1987, p. 9).
On April 28, the demonstrators learned that Secretary Califano had signed the 504 regulations. They continued to occupy the building, however, until they had reviewed the final regulations and were satisfied with their content. On May 1st, the motley crew — representing virtually every disability — disbanded, knowing that this experience would unite them forever.
The Independent Living Center as a Social and Economic Model
This victory enabled ILCs to grow in number and strength. While innovation and expansion monies available under the Rehabilitation Act of 1973 supported this expansion, the Rehabilitation Act of 1978 caused ILCs to proliferate. Considered "the single most far-reaching piece of legislation ever offered to the disabled community" (Varela, 1983, p. 45), it ensured that people with disabilities would be key players in the establishment and provision of IL services. Under Title VII of the new act, a national independent living program finally became law. It mandated that citizens with disabilities "be substantially involved in policy direction and management" of ILCs; it also charged that those citizens be among those staffing ILCs (Laurie, 1979). Title VII also extended program assistance to people whose severe disabilities might have made them ineligible for tradition- al vocational rehabilitation services (Varela, 1983).
Still influenced by Berkeley's CIL, ILCs generally divided their responsibilities between social service and advocacy. Services included peer counseling, attendant care referral, civil rights and benefits education, job and housing referral, assertiveness training, and self- management training. Advocacy included community education, legislative lobbying, and media relations.
Service and advocacy were and are critical elements of the IL movement. Ed Roberts, however, had envisioned the ILC as an economic model as well. As CIL's director, he had seen the Center's wheelchair repair shop gross over $400,000 a year. Roberts wanted to launch other businesses so CILs could be self-supporting. That self-generated income, he asserts, would have gone toward social and legal advocacy, “the first thing to shrivel up when the government tightens its purse strings.”
Before he could implement his economic dream, Roberts left CIL in 1976 to become director of the California Department of Rehabilitation. We may never know whether he was right about making ILCs economically self-sufficient. But Roberts was right on the money when he predicted what would happen when the government tightened its purse strings.
A New Wind from Washington
By 1977, reported Margaret Nosek, ILRU Research and Training Center on Independent Living, there were 52 independent living programs in the United States. The IL movement was thriving as the decade drew to a close, transforming accessibility and attitudes in communities nationwide. People with and without disabilities were changing their opinions of what life could offer all Americans.
But in 1981, a new president — and a new philosophy — moved to Washington. Ronald Reagan maintained that as a nation we had lived beyond our means for too long. He promised budget cuts and, at the same time, lower taxes and strong defense. It didn't take much imagination to figure out that his formula could work only if America's social programs were slashed.
On May 7, Congress was due to vote on President Reagan's budget proposal. Citizens with disabilities poured into Washington, demonstrated on Capitol Hill, and visited their elected officials. In an outstanding documentary, We Won't Go Away (Ingram, 1981), reporter Rosalie Wilkins stated, “Not only money, but the hard-won legislation, was at stake.” She asked Republican Senator Lowell Weicker, who had voted against Reagan's proposed local-option block grants (whereby each state could weaken disability rights by spending its block of social service funds any way it chose), “Do you think there is a backlash amongst the American public against the demands being made by handicapped people?” He replied:
I think there is a backlash in this country at anything that doesn't fit into a majority status, whether we're talking about the minority which is racial, the minority which is sex, the minority which is disabled and retarded. All of this means trouble. And the majority doesn't want to be troubled right now.
In the conservative atmosphere of the 1980s, many thought the glorious battles that marked the early days of the IL movement were a thing of the past. They were wrong.
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, director of Endependence 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 eight months in Vietnam, had been granted a week of rest and recreation. Taking note of Mistier's wheelchair, the airline agent told her she was not permitted to board unless she traveled with an escort. Mistier 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 (Uernigan, 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) was drafting the regulations in-house, trying to include as many points as possible over which there was consensus. Sharon Mistier, appropriately a negotiations participant, commented, "The problem is: What does DOT perceive as consensus?"
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, 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 pm. 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 p.m., the authorities showed up with a key. As the crowd cheered, McQuade boarded the bus. It took two minutes. McQuade's thought 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 two years, Johnson became increasingly committed to the struggle for wheelchair-accessible buses. He learned that two 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 (APT A) 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, explained 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] Para transit. 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 nationwide 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 nondisabled.
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. 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 nondisabled chronicler of the IL movement. Her filter is perhaps less academic than DeJong's, but her message is equally cogent. It appeared in The Disability Rag, a bi-monthly magazine that 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 was 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 maintained 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 I 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 nondisabled 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 nondisabled 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 nondisabled 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, Margaret Nosek estimated that over 70% of the approximately 350 programs providing IL services were 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, illustrated that separatism:
Prior to the 19705, 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 nondisabled 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 thought the 1990s would bring these questions to the fore:
- How can concepts of independent living be extended to persons traditionally not viewed as self-directed (i.e., those with cognitive or psychiatric impairments)?
- How can the primary health care system in the United States begin to serve the needs of disabled people who live in the community?
- How can various reimbursement systems (e.g., health insurance) accommodate the health and attendant service needs of people with disabilities?
- How can a unified national policy be developed to accommodate the in-home personal care needs of working-aged people with disabilities, not only those of the elderly population?
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), served on the platform committee of California's Democratic Party. As chair of the health committee, he fought 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 replied, “Let me count the ways!” Topping Winter's list was:
- Housing. A major problem, especially for the growing homeless population. Berkeley CIL runs a special project to tackle the problem of homeless people with disabilities; a counselor works with 30-40 homeless disabled people each month, helping them find shelter and permanent housing. The program has an 80% success rate.
- Attendant Services. A challenge that can be met by emulating Canada's national insurance program, which includes attendant services. Based on ability to pay, it has had excellent results, including better preventive care and cost savings of 8%.
- Employment. An overwhelming obstacle. Judy Heumann is quick to point out that unemployment figures, commonly used to track the upward mobility of women, blacks, and Hispanics, don't even exist for disabled people. And citizens with disabilities who are also members of other minority groups face a double and sometimes triple challenge, asserts attorney Deidre Davis, Rehabilitation Services Administration (RSA). An initiative called supported employment, through which people who are retarded learn their job over 3-6 months with the help of a coach, Winter said, could have great potential for those with head injuries as well as psychiatric disabilities.
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
When 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 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 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 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; five 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 professionals who had disabilities 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 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 four-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 ensured 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 four years for this bill!”
Ten months later, the waiting was over. During that same victorious March of 1988, others who had known prejudice first-hand decided they had waited for justice long enough.
The Gallaudet Uprising. Robert Ruffner (1988), president of the American Association of Disability Communicators, reported 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, 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 Zinser's resignation (Ayres, 1988). By March 11, Zinser resigned, stating, “I have responded to this extraordinary social movement of deaf people” (cited by Ruffner, 1988). Two days later, 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 seven days that it doesn't have to be that way.
Some say independent living 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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