A People's History of the Independent Living Movement

Chava Willig Levy relates stories from the IL Movement to create a people's history. This mongraph explores human rather than social forces. It looks at who rather than what shaped the IL movement. Internet publication URL: www.independentliving.org/docs5/ILhistory.html

Table of Contents


RTC/IL Monographs in Independent Living is published by the Research and Training Center on Independent Living (RTC/lL), The University of Kansas.
Copyright 1988 by Research and Training Center on Independent Living (RTC/IL). University of Kansas, Lawrence, KS 66045.

"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 #G008006928.


Dedicated to the Memory of Edmee Rodriguez, 1947 - 1988
President of the Board of Directors,
Brooklyn Center for Independence of the Disabled


A People’s History of the Independent Living Movement

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 Mistler
Margaret Nosek
Mary Jane Owen
Ed Roberts
Maggie Shreve
Jim Weisman
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 the Author

Chava Willig Levy is a New York-based writer, editor, lecturer, trainer and communications consultant. As founder and president of Lucidity Unlimited, she creates brochures, public relations materials, film scripts, speeches, and proposals, enabling corporate and nonprofit clients to communicate with clarity. She has over 12 years of experience designing and conducting management and communications training programs. Her 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.

Ms. Levy can be contacted at 255 West End Avenue, New York, NY 10023.


A People’s History of the Independent Living Movement

Table of Contents

INTRODUCTION: Wasn't That a Time?

IN THE BEGINNING
Mary Switzer: Pioneering Government Leadership
Gini Laurie: Powerful Grassroots Leadership

A METAMORPHOSIS THAT MADE HISTORY (Ed Roberts' Early Years)

"WE'VE TRIED CRIPPLES AND IT DIDN'T WORK" (The Berkeley Experience)
Just in Time for the Revolution

THE RIPPLE EFFECT

SIMULTANEOUS STRUGGLES
A Voice for Advocacy

THE REHABILITATION ACT OF 1973

TAKING A STAND BY SITTING IN

THE INDEPENDENT LIVING CENTER AS A SOCIAL AND ECONOMIC MODEL

A NEW WIND FROM WASHINGTON

FIGHTING THE GOOD FIGHT
Transportation: One If by Land, Two If by Air
Big Doings in the Big Apple
Making a Difference in Denver

FELLOW TRAVELERS
Two Who Have Joined the Fight
The Controversy Over Consumer Control
Separate Caravans

EMERGING ISSUES

EPILOGUE:
Isn't This a Time?
Playboy and Liberation: Strange Bedfellows
Mr. Dart Goes to Washington
The Civil Rights Restoration Act
The Gallaudet Uprising

REFERENCES


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.

     

  • 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 socialforces. 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 their 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.)

A People’s History of the Independent Living Movement

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, "just for fun," 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

Robert’s' 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 5 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 2 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.)

A History of the Independent Living Movement


"We've Tried Cripples and It Didn't Work"

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.

Just in Time for the Revolution

In his book The Hidden Minority (1979), Sonny KIeinfield 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 firsthand, 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 motorised 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.

A History of the Independent Living Movement


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 nation-wide disability rights network was springing up.

Over on the East Coast, a conference at a smaller university campus spawned an organization called Disabled in Action in 1970. DIA's co-founder, a graduate of Brooklyn's Long Island University, was Judy Heumann.

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 4 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 home room class. Then came college, where "everybody liked me, but still a barrier existed. Dates were unheard of. While feeling separate from non-disabled 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, coinciding with the establishment of DIA. Heumann won the case and began teaching at her former elementary school.

A History of the Independent Living Movement

A Voice for Advocacy

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; 3 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 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 eighty 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 currently 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)

A History of the Independent Living Movement


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: that 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 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 traditional 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 CIL 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, reports Dr. Margaret Nosek, Director of Research, 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.

continued..."Fighting the Good Fight"

English