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CHAPT.ER 2

FROM CHARITY TO INDEPENDENT LIVING

I n the fall of 1962 , James Meredith, escorted to class by U.S. marshals, integrated the University of Mississippi. That same school season, a postpolio quadriplegic named

Ed Roberts entered the University of California at Berkeley. Just as surely as Meredith ushered in an era of access to higher education for blacks and a new chapter in the civil rights move- ment, Roberts was more quietly opening a civil rights move-

ment that would remake the world for disabled people. The disability rights movement was born the day Roberts arrived on the Berkeley campus.

While Roberts's activism would be shaped by Berkeley, it was first formed in the experiences of being disabled as a teen- ager-after growing up with all the promises of a full life that

are the birthright of the nondisabled. In 1953, polio swept

through the modest frame home of Verne Roberts, a second- generation railroad worker, his wife, Zona, and their four sons.

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Health authorities quarantined the Robertses' house in Burlin-

game, a working-class town twenty miles south of San Francisco.

Everyone would recover from the virus except for fourteen-ye~­

old Ed, the oldest child. He had been a playground rat. He had played quarterback on the football team. He had shagged flies

for Billy Martin, the New York Yankees infielder who returned home to northern California in the off-season. Now Roberts,

unable to move more than his head or even breathe on his own; hovered near death in a hospital.

Roberts spent the first year of his illness in a dreary county

hospital, confined to bed, never allowed to sit up in a wheelchair. Because the muscles that worked his lungs had been paralyzed, he could not breathe for long on his own. He spent eighteen

hours a day in an eight-hundred-pound iron lung. It was yellow, alien looking, and as big as a telephone booth. He lay on his back in the tank, which enclosed his entire body except his head. The

lung chamber created positive pressure from a .bellows powered by a small electric motor. The uniform pressure over his ches~. thorax, and abdomen forced Roberts to inhale air through hIS

mouth. The machine became the boundary of his childhood. During the day, he could go up to six hours outside the lung by "frog breathing," swallowing deep gasps of air to fill his lungs.

Roberts saw himself as a "helpless cripple" overwhelmed by depression, powerlessness, and self-hatred. He asked his parents

ifhe would ever go to college, marry, or hold a job. The answer,

based on what doctors, nurses, and counselors had said, was C always no. It would have been more humane, a doctor had told

his mother, if the high fever of the polio had killed him quickly. Instead, the doctor said, Roberts would live as a sickly "vegeta- ble" for the rest of his life. Roberts had no reason to think that

the doctors were wrong. His decision was to attempt suicide by

refusing food, in defiance of his private-duty nurse. His weight

plummeted from 120 pounds to 50 pounds in seven months. The day the nurse left, he started to eat again. It was his first act

FrlJfn Charity to l""'dmt Living 43

of self-empowerment, albeit a subconscious one. No one would tell this "helpless cripple" when and what to eat. He would decide for himself.

After twenty months of hospitals, he moved back to his room in the house in Burlingame. The iron lung moved with him. Roberts attended school, via telephone. His new classmates

(he was now two years behind) sat at attention at their desks at school. Roberts, isolated, listened over the phone, often while lying in the iron lung. When students answered a question, they

would pass around the microphone to speak to the classmate they had never Seen. Before his illness, Roberts had been, at best, an indifferent student. Homework was boring. He had been slow

to learn to read. But from his iron lung, he realized that educa- tion would be his power. His mind, he knew, was the one thing

that had not been weakened by the illness. As he got healthier, there was no reason--other than his own embarrassment-to

keep him from school. He returned, in a wheelchair, for his senior year of high school.

Shy and ashamed of his crippled body, he had rarely ven- tured outside his home. Over time, he had come to accept his disability, which now was central to his identity. Some regarded

him as a freak in a wheelchair, the poor boy in the machine. Yet he had proved wrong all the doomsayers who had thought him

better off dead. He had a different life, but it was an okay life. Disproving all those experts had given Roberts a growing sense of his own power. His first day back at school, too, had been a

revelation. As he was lifted from the car, he had felt the staring eyes of his schoolmates. Staring was what he had most feared.

But the stares that day were not looks of disgust. Those who

were disconifited had averted their eyes. Instead, these were stares of fascination and excitement, as if Elvis Presley had

suddenly descended upon the school. "It was like being a star,"

recalls Roberts. "So I decided to be a star, not a helpless cripple."

Despite his good grades, the school principal, a humorless

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bureaucrat who did everything by the book, refused to give

Roberts his diploma because he had not completed the driver's

education and gym requirements. The principal got backing from the assistant superintendent of schools, but Zona Roberts

fought back. A former labor organizer, she raised hell, complain-

ing all the way up the line to the school board. Finally, at her

insistence, Roberts's physical rehabilitation sessions were

counted as physical education, the driver's education require-'

ment was dropped, and Roberts got his diploma. For a disabled

person growing up, says Roberts, to have "parents willing to

fight for you and include you in that fight" is "the most impor-

tant skill you can learn to be successful." This was an early

example of how only harsh attitudes of others, not his own

physical shortcomings, would threaten to hold him back.

After high school, Roberts spent two happy years at San

Mateo Community College. Thirsting for more education, he

planned on applying to the University of California at Los An- geles, one of four U.S. universities at the time that had special

programs and accessible campuses for students in wheelchairs.

UCLA had set up a disabled students program for disabled

World War II veterans. Roberts, as a disabled man, had been thinking practically-in terms of wheelchair access and a school

ready to admit him despite his disability. But Jean Wirth, his

academic adviser at San Mateo, insisted that he do what any

other student would do and set his sights on the best, not the

least restrictive, school. She talked him into applying to the

University of California at Berkeley, which had a superior repu-

tation in political science, the area Roberts wanted to study.

But California's Department of Rehabilitation refused to pay

for his four-year college education, as it did for other, less

disabled students. Roberts's counselor, who had a slight limp,

ruled that spending money on Roberts would be wasted since it

was "infeasible" that he could ever work. San Mateo's president,

the dean of students, and Wirth appealed, arguing that Roberts

From Charity to Int/4pmdmt Livi"g 4'

had excelled at the community college and deserved the chance

to go on. When they were rebuffed, the school officials took

Roberts's case to the local newspaper, and eventually the state

agency was forced to relent in the onslaught of negative public-

ir: .. Roberts had learned another valuable lesson: the press was'

wIllmg to champion the cause--even if overdramatically-of a worthy "cripple."

Ev~n t~en, .~ob~rts still had to convince officials at Berkeley to admIt hun. Weve tried cripples before and it didn't work"

one Berkeley dean explained matter-of-factly to Roberts. Pract~­ cally speaking, he was correct. The classrooms were not accessi-

~le, and the library and the cafeterias had steps. But Roberts had SIdestepped this problem at San Mateo by relying on attendants

or friends to lift him out of his wheelchair and carry him into

classrooms. The bigger problem at Berkeley was where to live.

~o dormitory had floors strong enough to take the weight of the eIght-hundred-pound iron lung.

But another thing Roberts had learned was not to stop at the

first roadblock. He knew he had to keep searching until he found a sympathetic person who was open to bending the rules. Rob-

erts found one in Dr. Henry Bruyn, the director of student

health services. Bruyn offered a solution: Roberts, with his iron

lung, could move onto the third floor of the university'S Cowell Hospital. Living in the student infirmary makin 't . ' g I a one-man dormItory, was not exactly the college experience Roberts had in

mind. But i.t w~ a way onto what had been a closed campus. As Berkeley tned ItS experiment, a local newspaper wrote about

Roberts in a story with the headline HELPLESS CRIPPLE GOES TO SCHOOL.

At Berkeley, Roberts needed someone to push his wheelchair

a~d . help him get dressed and eat. Sometimes a friend helped wtlltn~ly. But for the most pan, he hired attendants, including sOm~tImes . his brother Ron, also a student at Berkeley. State fundmg paId for the attendants. California had the nation's first

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such program. "It wasn't inexpensive, a couple hundred dollars a month," says Roberts. "But as it turns out, it was a real breakthrough." Money, Roberts suspected, had been the real reason it had been deemed "infeasible" for him co attend Berke- ley. Education at San Mateo had been inexpensive: he had lived at home in Burlingame and tuition at the junior college was cheap. For a quadriplegic like Roberts, joining the nondisabled

world would sometimes require extra spending. Roberts could stay away from the iron lung for up to several

hours at a time. "That was enough time to go to classes a.nd even go out and drink a little," he recalls. Most buildings were

accessible, but he had to find back doors and circuitous paths without steps to the elevators. There were innovations to keep up with classwork. He could move the pages of a book, for example. with a stick that he clenched between his teeth. He read while lying on his back in the iron lung. The book slipped into a reading stand on the mirror one foot above his head.

Getting onto a vibrant college campus was a liberation. He had the typical college experiences of the I960s: he found intel- lectual discussion exciting, and he experimented with drugs and sex. Each typical college experience pushed him farther. By I967, Roberts's mother, Zona, had moved to Berkeley to take classes and be near her son. Judy was her neighbor and a student,

too. Judy, recently abandoned by the husband she had helped through medical school, and Ed would engage in long discus- si~ns of their vulnerability and their feelings of having to fight stereotypes to win opportunities. Soon, their neighborly rela ... tionship turned into a romantic one. Roberts was dependent on someone, often his mother or brother, to push him in his wheel-

chair. A new innovation, a wheelchair powered by a twelve-volt battery, was on the market. But rehabilitation counselors had told Roberts that his weak hands could never manipulate the joystick control. Motivated by love and a need for privacy, however, Roberts learned to navigate one with only an hour and

From Charity to lntkpendent Living 47

a half of practice. The power wheelchair represented indepen- dence. For the first time since the polio, Roberts was free to

mov~ when he wished to move, to go where he wished to go, anytIme he wanted.

Roberts was alone on the empty wing of Cowell, but word of his experiment traveled quickly. Soon the university began admitting other physically disabled applicants. The first, the following year, was John Hessler, who had heard about Roberts from his physical therapist. A lanky six-foot-seven-inch quadri- plegic, Hessler had broken his neck in a diving accident. Rob- erts, Hessler, and the other disabled students who were soon to join them got caught up in the political upheaval of the times, which burned intensely on the Berkeley campus in the Free

Speech Movement, the anti-Vietnam War protests, and other causes. Roberts watched and learned from the civil rights move- ment and the nascent women's movement. Women rejected that "anatomy was destiny" and were struggling to control their bodies. Disabled people, too, were questioning the medicaliza- tion of their lives. Particularly, Roberts noted how feminists used stereotypes about them-as the weaker, milder sex-to their advantage. The women would let their opponents fall into such tired assumptions, then catch them off guard with the force of their anger and the unassailable correctness of their demand for equality. Roberts saw that he, too, could use the charitable and protective instincts of his enemies. When someone saw a severely disabled man and felt compelled to help, Roberts would

use that compassion as an opening to blast away at the low expectations, including the assumption that he would never work or could not get around a campus.

Roberts finished his undergraduate degree, got his master's degree in political science, and began work on his doctorate. By

1967 there were twelve severely disabled students living in Cowell. They called themselves the "Rolling Quads." In late- night bull sessions on the hospital floor, Roberts and his friends,

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in their wheelchairs and iron lungs, would strategize constantly about breaking down the common barriers they faced-from

classrooms they could not get into to their lack of transportation

around town-and dissect the protests for self-determination of

minority students.

In 1968, the dormitory became a formal program run by the state department of rehabilitation. When one counselor tried to

evict two men from Cowell, complaining about their low grades, , the rest of the Rolling Quads rebelled. "She wanted us all to get

A's and to carry a certain number of credits," recalls Roberts.

Some of the .men were moving through Berkeley slowly, either because their disabilities made it hard to study or because they

wanted to delay the inevitable departure from this rarest com- mune of like-minded brothers. But the counselor was threaten- ing to cut off state funding for those who did not follow her

instructions. And to justify the eviction of the two men, she

brandished the bureaucratic label of "infeasible" for work. "No-

body was going to threaten our independence, or the program

itself," says Roberts. So he led a rebellion, petitioning university

administrators and appealing to Berkeley's liberal student body. It was unfair, he argued, for the freewheeling campus to apply

stricter rules of behavior to a pocket of disabled students. Think-

ing back to his own fight to get into Berkeley-and then the

protest movements he had seen on campus--Roberts put in

telephone calls to the local newspapers, radio, and television stations. "We haven't had a villain like this in a long time," one

reporter confided to Roberts. Other students at Berkeley offered

words of encouragement on the street. Within a few weeks, the

counselor was reassigned.

Back in Cowell, the late-night discussion sessions focused on total self-sufficiency. The Rolling Quads wanted to be their own

counselors, or case service managers, so they would never again

have to kowtow to a bureaucrat who controlled their funding.

They needed to know how to get a job on their own, so they

From Charity to Independent Living 49

would not become dependent on any state program. They talked

about whether the know-it-all assumptions of their rehabilita- tion counselors were motivated by a need to control their clients

if for no other reason than to make sure their own jobs did not

become obsolete. The Rolling Quads realized that they would

have to think of themselves as consumers of state services, not as clients.

The next battle would come the following year, when the city of Berkeley was renovating the main shopping street south of campus. Curb cuts, at that time, were not a standard part of street design. Because their wheelchairs could not ride over five-inch curbs, Roberts and his friends rarely left campus. But

eight members of the Rolling Quads showed up at a city council meeting--eight wheelchairs in one room, Rolling Quad Donald

Lorence would explain later, is a dramatic statement in itself-

and won a commitment of $50,000 a year to ramp city streets. From these seemingly small victories emerged a sense of political power.

From Campus Life to Independent Living

It was about this time that the idea of living in Cowell began

to get stale. Residing in a hospital still stigmatized the Rolling

Quads; they were students by day and patients by night. And

that was exactly the image they wanted to erase. Despite their polio or spinal cord injuries, they were as healthy as other

students on campus. The original idea was to find an expansive

communal house off campus, but some members balked. Inde- pendence meant having choices about where to live and not

needing to live always with other wheelchair users. They could

not, after all, spend their entire lives together as part of some SOrt

of disability frat house. Yet, finding apartments that could be

made accessible would be a herculean task. Two students had

already tried to move out of Cowell, but only one had succeeded

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in finding a wheelchair-accessible apartment. The other had

returned to Cowell, discouraged. Nevertheless, with their new sense of collective power, the Ro~ling Quads began planning to set up a support group to help each other live independently.

An important break would come from an old Roberts connec- tion: Jean Wirth, his counselor at San Mateo. Wirth had started a program there to cut down on the high rate of black and Hispanic dropouts. Traditionally, dropping out was seen as an academic problem. But Wirth understood that often, particu- larly with her minority students, it was the problems of evetyday living that led to school failure. So Wirth asked other students· to be peer mentors. If a minority student was about to quit because he or she had no transportation to school, the mentor arranged a carpool. If the student could not afford school, the mentor helped find a job. Wirth's College Readiness Program worked so well that a federal education official asked her to come to Washington to try to replicate the program on a national leveL In 1966, at Wirth's request, Roberts flew to Washington to help her write provisions to include disabled students among the listed minorities.

Wirth and Roberts specified that the disabled students' anti dropout programs were to be run by disabled people when- ever possible. Since this provision was little known and there were only a handful of other schools with special programs for disabled students, the Rolling Quads were virtually assured that their grant proposal to Washington would be received favorably. The Department of Health, Education and Welfare speedily

approved $81,000, and the university kicked in $2,000. By the fall of 1970, the Physically Disabled Students' Program, or PDSP, as it was known, was open for business in a newly ramped

office on campus. Roberts and his colleagues drew on their own experiences to

figure out what was needed to live independently. In essence, PDSP was Wirth's antidropout program for minorities, but it

F1'OfI1. Charity to Indeptndmt Living

was applied to disabled students. The PDSP hired disabled counselors who would scope out available and accessible apart- ments for people in wheelchairs. They put together a pool of. potential attendants, who would help prepare meals, push

wheelchairs, and do whatever else was needed to help the Stu- dents. In Berkeley, where people came for the countercultural life-style, it was easy to find attendants who would work odd hours, even if the job was often difficult.

Wheelchairs were a major obstacle to independence. They had been invented for people living at home or in institutions. They had not been constructed sturdily enough for the vanguard of radicals who were redefining what it meant to be paraplegics and quadriplegics by zipping around the spread-out Berkeley

campus. Consequently, Roberts and his friends found that their wheelchairs broke down frequently, an event that could keep a student out of classes for weeks. So PDSP set up its own wheel- chair workshop, staffed twenty-four hours a day by the self- taught bancl of wheelchair wizards, who were soon tinkering with their own designs for a better, stronger wheelchair. Others would learn the latest designs to modifY cars and vans so that those unable to USe their legs could work the brake and gas pedals with their hands. The Rolling Quads also ran PDSP's advocacy department, walking students through the maze of red tape and bureaucracy that accompanied attendant-care funding and other benefits and services.

The student program was radical. The medical model of disability measured independence by how far one could walk

after an illness or how far one could bend his legs after an accident. But Roberts redefined independence as the control a disabled person had over his life. Independence was measured

not by the tasks one could perform without assistance but by the quality of one's life with help. The health care system offered only custodial help. Roberts rejected this in favor of innovative self-help and group organizing. Disabled people themselves, the

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newly christened' "independent living movement" assumed,

knew better than doctors and professionals what they needed for

daily living. And what disabled people wanted most of all was

to be fully integrated in their communities, from school to work. Independence. Self-sufficiency. Mainstreaming. Disability as

a social problem. These were the principles that guided the PDSP and the disability rights movement of which PDSP was the leading edge. As the program grew, it soon became clear that, the fight for rights had to embrace a wide range of disabilities.

Traditionally, various disability groups worked separately for their own members, with little sense of common purpose. Even, the Berkeley program was for "physically" disabled students and was run by people in wheelchairs. But shortly after it opened, PDSP started getting requests from blind students who saw the similarities in their own struggles for independence. The attend-

ant referral service, for example, was expanded easily to include a pool of readers for the blind. It was not lost on Roberts, who was studying community organizing, that political power ex-

panded with coalition building. When the PDSP started, John Hessler, Berkeley's second

quadriplegic, had gone off to France to study. But Roberts wrote an airmail letter asking him to head the new students' program. Hessler understood that something big was starting and wanted

to be part of it. He returned to Berkeley, even buying a modified van. It was common for paraplegics to drive cars and vans with

brakes and gearshifts they could move with their hands and arms. But even for a grand thinker like Roberts, the sight of a

quadriplegic like Hessler, with his limited arm strength, mov-

ing such levers, was mind-boggling. Hessler's driving was so

impressive that he would show off his van to new disabled . students the program was trying to recruit.

There had been a few other college programs for disabled

students. The University of Illinois had been the first, setting up a similar but less ambitious program in 1950 to help disabled

From Charity to Intkpmdmt Living 53

veterans returning from World War II. By 196r, there were r63 disabled students, IOr in wheelchairs. Students got the campus

ramped, had their own fraternity, and published an annual mag-

azine. A fleet of buses equipped with hydraulic lifts made an hourly route around campus and to shopping spots. There were separate wheelchair sports teams, including softball, as well as a

cheerleader squad of women in wheelchairs. There were even wheelchair square dances. Although people disabled by polio would eventually go to school there, most at Illinois were less disabled than those at Berkeley, and few of the Rolling Quads

would have qualified for the Illinois program, which required students to be able to fend for themselves, without attendants. Nor did the Illinois program-which was run by university

officials-incorporate the self-help approach of the Berkeley students.

The Center for Independent Living

The PDSP in Berkeley was an instant success. A staff of nine full- and part-time workers quickly had a list of one hundred student clients. Disabled students moved out of Cowell quickly

and succeeded in school. But from the beginning there was one problem: the nonstop requests for the same help from disabled

people who were not students. Staffers at PDSP rarely turned anyone away. But by spring, they found they could not keep up with the needs of the students and others as well. That May, Roberts, Hessler, and the other PDSP leaders got together to

discuss how to set up a parallel program for nonstudents. The idea for the Center for Independent Living was born.

Incorporated in the spring of 1972, the Center for Indepen- dent Living--or ClL, as it was known-would work on the same principles as the disabled students' program. It would be run by

disabled people; approach their problems as social issues; work with a broad range of disabilities; and make integration into the

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community its chief goaL Independence was measured by an individual's ability to make his own decisions and the availabil-

ity of the assistance necessary-from attendants to accessible housing-to have such controL Unlike the student program,

which had modest resources, CIL operated on a shoestring. The

student program donated office space-a large closet-supplies, and some secretarial help. A door balanced on a small table

became the center's desk. Roberts, cofounder Phil Draper, and

others put aside 10 percent of the pot of their occasional Friday

night poker games to keep the center running. A donated Volks- wagen van became the center's transportation program. People

in wheelchairs could not get onto city buses or into taxis. The

van took them to jobs or around town to shop or play. Crucial grants came from Washington and the university. But the

money would stop and start the first few years, at times forcing

the center to shut down until the next grant came in.

Roberts took over as head ofCIL in February 1974, a job he held for eighteen months. He had left Berkeley briefly to teach community organizing to black residents of East Palo Alto. Like

Hessler in France, he, too, had felt a gnawing sense of missing something important back on the Berkeley campus. It seemed time to use his expertise as an organizer to help his own people.

He started talking more explicitly of disability being a civil rights issue, although there was resistance to drawing such a

bold parallel with the problems of black Americans. "We were

talking about self-empowerment, self-hatred, and discrimina-

tion," Roberts says, "all the same issues." The center's extraordi-

nary new grant writer, Joan Leon, raised a phenomenal $1 million, and the program's financial picture brightened.

Then, in 1975, California's new governor, Jerry Brown--at Roberts's suggestion after he took Brown on a tour of CIL- appointed Roberts the director of the state Department ofReha-

bilitation. Roberts delighted in the irony of being the chief of the agency that a decade and a half earlier had deemed it "infea-

From eMity to Independent Living 55

sible" that he would ever hold a job. Now he was about to be

married to Catherine, who had once been his physical therapist.

Starting a family-the couple was soon to have a son, Lee- only underscored for Roberts the silliness of a system that tried to write off people based on the severity of their disability.

Roberts set about altering the California rehabilitation sys- tem. like CIL, the Department of Rehabilitation drew on a

variety of services. Funding to these agencies was based on how

many people were placed into jobs, something that was easy to

measure. This, Roberts complained, forced a practice called "creaming." Rehabilitation counselors tended to help those with the most minor disabilities. Severely disabled people-like Rob- erts-were written off as too hard to help into jobs. Roberts had

responded to this by setting up CIl, which had "independent living," a more vague and hard-to-measure outcome, as its goal.

When Roberts assumed his post, he merged the seemingly con- tradictory principles of independent living and rehabilitation services. He expanded funding for attendants to help disabled people with the things they needed for daily living, from eating

to dressing. In California, every disabled person was to be helped, no matter how severe the disability. Although the de- partment under Roberts would reach out to more disabled peo- ple, federal funding formulas were still based on the number of

people placed in jobs, and the debate over creaming continues to

this day. Roberts's reforms turned the department upside down,

and many employees quit, bitter about the change. But many,

to Roberts's surprise, also realized that deemphasizing numbers and concentrating on quality was the proper direction. Their

director's own unexpected success served as testament to the

error of lowering expectations for the most severely disabled. Berkeley was not the only place where the lessons of civil

rights and student protest were shaping a new generation of

disability activists. In the spring of 1970, one year after she graduated from college, Judy Heumann was denied a license to

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teach in New York City's public schools. She fought her exclu- sion and emerged as another powerful disability rights leader. Heumann, like Roberts, was a quadriplegic, the result of polio. Hers had struck when she was eighteen months old, so, unlike Roberts, she never had a sense of self-identity without being disabled. Heumann was the eldest of three children born in Brooklyn to German-Jewish immigrants. A doctor urged Werner Heumann, a butcher, and his wife, Ilsa, to put the child in an institution. Relatives told the couple that their misfortune must have been the result of some horrible sin on their part. Later, the local elementary school principal deemed the young girl in a wheelchair a "fire hazard" and for three years sent a teacher to give her home instruction twice a week for a little over an hour each visit.

But Heumann's mother, with a Jewish immigrant's respect for learning, knew this was not a real education. Besides, her daughter was isolated and not making friends. Ilsa Heumann

became a battler, emboldened by small victories, who fought to get Judy into a regular school. At first Judy went to a special elementary school for disabled children-where she realized that the parents of many of her classmates had low expectations for their children and that the teachers, when not prodded by pushy parents, responded accordingly. It was a city policy that when children in wheelchairs reached high school age they would return to their families for home instruction. Ilsa Heumann asked the March of Dimes, where she had done volunteer work for years, to help. But the charity's officials declined, saying they wanted to stay out of politics. Banding together with· other parents, Ilsa Heumann brought enough pressure on the school board that it reversed the policy. Judy Heumann entered high school in 1961, a time she remembers for the parallel efforrs of black Americans to force their way into closed institutions.

Heumann would pick up her mother's zest for battle. She was accepted at Long Island University, an urban school in the

From Charity to Independent Living '7 middle of Brooklyn. There she led her own battles,· forced to insist on everything from the right to live in a dormitory to getting someone to lift her wheelchair over the steps to the classroom buildings. She organized other disabled students to fight for ramped buildings. She took part in protests against the Vietnam War as well.

Heumann studied speech therapy with the goal of helping element.ary school children. But she was denied her teaching certificate, despite passing the oral and written parts of the exam, when she flunked the medical exam. The testing physi- cian questioned whether she could get to the bathroom by herself or help children out of the building in an emergency.

Heumann quickly slapped the Board of Education with a lawsuit, charging discrimination. Then she went to the local newspapers, which were happy to tell the story of a qualified teacher up against a coldhearted bureaucracy . "You Can Be President, Not Teacher, with Polio," said the New York Daily New! in a headline. "We're not going to let a hypocritical society give.us a token education and then bury us," Heumann angrily told the newspaper. When it became clear that the board would likely lose its case, it settled out of court, and Heumann was given her certification. Yet no one would hire her, until the principal of the elementary school she had attended in Brooklyn offered her a job.

The experience taught Heumann that she would always have to fight for her rights. Even then, attitudes would still be barriers. But as a result of the press coverage, Heumann received hundreds of letters, largely from others with disabilities with similar complaints. From the base of those contacts--and ones with disabled friends from special summer camp and from col- lege--Heumann in 1970 started her own disability rights group, Disabled in Action. She was twenty-two.

Unlike Roberts's organizing in California, Heumann's DIA would be explicitly political and it did not provide direct ser-

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vices to help disabled people live independently. Instead, it

engaged in political protest. In 1972, DIA traveled to Washing-

ton to demonstrate at the Lincoln Memorial after President

Richard Nixon vetoed a spending bill to fund disability pro-

grams. Then, in the closing days of the presidential election, Heumann joined with a group of disabled Vietnam veterans to take over Nixon's New York reelection headquarters to demand,

militantly if unrealistically, an on-camera debate with the presi- dent himself.

The following year, summoned by Roberts, Heumann moved to Berkeley to work at ClL. California was a revelation.

She was picked up at the airport in a friend's van with a hydrau- lic lift. She could get the state to pay for her personal attendant.

In the growing West, she could find newer buildings that had

been made accessible. Most of all, she found disabled people who

had come together in a common group identity. From 1975

through 1982 , Heumann would serve as the deputy director of

ClL, blending her East Coast political activism with the Berke- ley disability community's focus on providing independent liv- ing services. In California, Heumann, along with Roberts, would continue to rewrite the history of the disabled.

The History of Disabled People in America

Throughout most of its history America has been inhospitable

to people with disabilities. In colonial America, the settlement

of a vast new rural society meant that early colonists PUt a premium on physical stamina. The early colonies tried to pre- vent the immigration of those who could not support themselves

C and would have to rely on state help. People with physical or mental disabilities who were potentially dependent could be deported, forced to return to England.

The nation's attitude softened somewhat during the Revolu-

tionary War. When the Continental Congress paid for up to 50

From Charity toltttl4pmdmt Living '9

percent of the pensions of disabled soldiers, it was the first time

the federal government helped the states care for their disabled.

A system of marine hospitals was established in 1798 to provide for sick and disabled sailors. The Marine Hospital Service would

later evolve into the Public Health Service, and in 1922 some of

these hospitals became the first Veterans Administration hospi- tals. The nation's sense of indebtedness to men who became

disabled while fighting its wars was to inspire many major

disability programs throughout U.S. history.

There are few historical records of disabled people in the

early y~ of the new nation. What does exist suggests that many disabled people were able to fit ~ily into society. Gouver-

neur Morris, who helped draft the Constitution and was later a

U.s. senator from New York, wore a "rough stick" to replace the

left leg he lost in a 1780 carriage accident. Stephen Hopkins

referred to his cerebral palsy when he signed the Declaration of

Independence, saying, "My hand trembles but my heart does

not."

Larger colonial towns, reflecting Elizabethan poor laws, had built almshouses for the poor and the physically and mentally

disabled. These had continued to grow during the first half of

the nineteenth century as the, nation's population grew and a

simple rural society became industrialized and urbanized. Doro-

thea Dix, a Boston schoolmistress, led reformers in the 1840S

who demanded that the states take control of miserable local

almshouses, where adults and children, the disabled and nondis-

abled, criminals, and those with retardation, epilepsy, and men-

tal illness were all thrown together. Dix had found people with mental illness and retardation "in cages, closets, cellars, stalls,

pens! Chained, naked, beaten with rods, and lashed into obedi-

ence." The result was that states took over such institutions,

built more, and set up specialized facilities for the criminals,

disabled, and others who had populated the almshouses. In 1854. Congress, at Dix's urging, agreed to break with past

60 NliPity

practice and to provide federal funding for separate facilities for what were then called the deaf, dumb, and blind and mentally

ill. But President Franklin Pierce vetoed the measure, saying that the care of the physically and mentally disabled was not a

federal responsibility. Historian John Lenihan noted, "Pierce's veto became a landmark precedent limiting federal intervention in welfare matters for the next half century."

Doctors and educators working with the blind and deaf, following experiments in France, were among the first to under-

r stand that disabled people could be integrated into society rather I,." than sent away to institutions. A school for the blind was opened

in Baltimore in 1812, and Thomas Hopkins Gallaudet founded his school for the deaf in Hartford in I8n. Samuel Gridley Howe would open the Massachusetts Asylum for the Blind, later

the Perkins Institute, in 1832 with a curriculum that paralleled that in other schools. His theory was an early form of "main-

streaming," in which he prepared blind youths to find work and

live self-sufficiently in their communities. Howe's success in teaching Laura Bridgman, who had been left blind, deaf, and

unable to speak by an attack of scarlet fever when she was two,

brought visitors such as Charles Dickens and American educa- tors, and with them a recognition that reformers were right that people who were both blind and deaf could be educated. This

success also encouraged Howe to open the first state school to try

to train "idiots and feebleminded youth" in 1848. The work of Howe, Dr. Hervey Wilbur, and others showed that mental retardation could not be cured, as they had hoped. Nor could people with retardation be easily educated. As a result, these schools became more custodial in their care than were the schools for the blind and the deaf. As historian Lenihan noted, however, "If the gap with the mainstream of society was not

closed, at least retardation was no longer considered an incurable disease tantamount to insanity."

The Civil War forced the nation, for the first time, to deal

From Charity tli Independent Li1Iing 61

with large numbers of physically disabled citizens. The South, because of heavy casualties and poor medical care in the Confed- erate Army, was particularly hard hit. Mississippi, in 1886, spent 20 percent of its state revenue on artificial arms and legs.

In the North, a National Home for disabled Union soldiers was established in 1866. The rise of orthopedic medicine began to develop partly in response to the returning Civil War wounded. But, as historian David J. Rothman writes in The Discovery of the Asylum, the American reformers' experiments with institutional- izationwere falling apart by the 1850s, a trend that was exacer- bated by the added demands of the Civil War.

These institutions continued to grow, but, losing their grounding in charity, they became places of abuse, isolation, and

segregation. The rise of social Darwinism and the eugenics movement at the end of the nineteenth century-two related

schools of social thought that challenged whether it was even

desirable ro have a society with disabled people-brought new

hostility. As the new century opened, Washington, for the first time,

was to play an extensive role in welfare. Once again, returning disabled war veterans stirred the nation's sense of obligation. Medical advances, including the development of new medicines,

allowed far higher rates of survival for people who became dis- abled. Nowhere was that more evident than in the returning World War I veterans. So many, who would have died before,

returned with disabilities that Washington was forced to estab- lish the Veterans Bureau in 1921 to deal with their needs. Adding to a new national awareness of disability-fed by muck- raking journalists and labor unions-was the rise of industrial accidents. Congress passed major rehabilitation programs in 1918 and 1920, guaranteeing federal funds for vocational train- ing and job counseling. Charitable groups also set up employ- ment bureaus for the disabled, including the American Red

Cross. A 1921 law established child and maternal health centers

No Pity

to reduce the nation's infant and maternal mortality rate. This

would lead to a broader federal role following the Depression. In

I935, Franklin D. Roosevelt signed the Social Security Act, which, for the first time, created a program of permanent assist-

ant to disabled adults.

Roosevelt became the country's most famous disabled per-

son. Americans admired his battle with polio. They sent money

to the March of Dimes, which he helped found, and schoolchil-

dren even sent their dimes to build him a White House pool for

exercise. Historian Hugh Gregory Gallagher notes, however, in FDR's Splendid Deception, that Roosevelt went to great lengths to hide the extent of his handicap. Roosevelt could not walk,

although Americans held a contrary impression. "The generally

accepted line was that FDR had had polio and was now a bit

lame; he had been paralyzed, but now he was recovered. He was

a 'cured cripple: " writes Gallagher. He was never seen in pub-

lie, nor photographed in private, in his wheelchair. This was still

possible in an era before television. He, his son, and Secret Service agents had devised elaborate ways to get him in and out

of buildings. Ifhe had to enter in public view, his son and agents

would walk closely by his side, and FDR would lift himself on

their arms, as if he were a gymnast on parallel bars. He would

seem to be walking although he was, in effect, being carried.

Washington was a wheelchair-accessible city--or at least the

parts frequented by FDR-with ramps at the White House,

Capitol, the War, State and Navy Building, and St. John's

Church across Lafayette Square. It would be another thirty years

before such access was required by law.

Once again, disabled soldiers returning from war, this time

World War II, spurred another expansion offederal rehabilita-

tion programs. There was renewed national dedication to help-

ing this most highly visible popUlation of disabled Americans.

The Paralyzed Veterans of America formed in I946 to promote

their medical care~ and the President's Committee on Employ-

From. Charity to Independent Living

ment of· the Handicapped was founded the following year to

convince business of its obligation to hire them once they left

rehabilitation. Most important, however, was the creation of

rehabilitation medicine during World War II by Drs. Howard

Rusk and Henry Kessler . Working independently, these men set

up rehabilitation centers that worked on a revolutionary idea.

They would go well beyond acute care to put together all the

medical services-from physical therapy to occupational ther-

apy-that a newly disabled person required to return to a nor-

mal life. The independent living movement that Roberts created

twenty years later was both an improvement on this and a

rebellion from it. The independent living movement endorsed

physiatry's ground-breaking emphasis on looking at the whole

person, but it rejected the medical model that could view that

person only as a patient, in the context of a medical setting.

For the most part, it was government or charitable groups

that helped people with disabilities, but there were a few scat-

tered cases of disabled people rising up on their own. Deaf and blind people had been the first to set up national advocacy

organizations, beginning in the last two decades of the nine-

teenth century. Such groups proved effective. Blind relief laws,

providing special financial assistance, were enacted in twenty-

seven states in the 1920S and early 1930S. But when economic

times were good, others argued that to take special assistance

only furthered perceptions that blind and deaf people were in-

cap~ble of living without charity. Robert Irwin, the blind

Harvard-educated man who led the American Foundation of the

Blind through its early years in the 1920S and 1930S, promoted

self-reliance and opposed automatic pensions or special schools

for the blind.

Disabled people turned to civil disobedience for the first

time during the Depression. Historian Paul Longmore tracked

down the lost story of the short-lived League for the Physically

Handicapped, a group of three hundred disabled New York

~ ~~

pensioners--most with polio and a few with cerebral palsy- who occupied the Works Progress Administration offices in Washington to protest that they were being routinely rejected for WP A jobs. Another important self-help group started in

1958 when Gini Laurie, who volunteered with patients on a Cleveland polio ward, started the Toomey j Gazette as an "alumni" newsletter for people leaving the hospital. Soon people were writing in with tips about how they took care of a baby from a wheelchair, managed on a trip to France, or started their own mail-order business working at home over the telephone. The newsletter turned into a journal of se1f-reliance--today it is the

Rehabilitation Gazette-and soon won a worldwide readership, including a young Ed Roberts in California.

But it was the rise of a parents' movement that would most

change the course of disability policy in the years following World War II. A proliferation of new disability groups like the

United Cerebral Palsy Associations, founded in 1948, and the Muscular Dystrophy Association in 1950 were started by par- ents. As more children survived disability, more parents sought

to keep them from being institutionalized. They realized they shared their struggle with other parents who were also frustrated by the paltry support offered by doctors or social service agen- cies. Their biggest common concern was to get their children educated. These new parents' groups took their case to Congress,

which, in 1966, created a federal bureau for the handicapped.

The groups sent permanent lobbyists to Washington, and in

1970 the bureau began providing funds for training special- education teachers and developing separate materials for teach-

ing the children in these classes.

Section 504

The first civil rights law for disabled people, however, would not be the end result of a hard-fought battle. Disabled people did

From Charity to Independmt Living

not even ask for it. Nor had they lobbied for it. Section 504 of the Rehabilitation Act of 1973 was no more than a legislative

afterthought. The overall act authorized $ 1.55 billion in federal aid to the disabkd to be spent over two years. For President Richard Nixon, as well as for Congress and even disability groups, including Heumann's DIA, this was simply a spending bill. Nixon had vetoed two earlier versions he claimed were too costly. But at the very end of the bill were tacked on four unnoticed provisions-the most important of which was Section

504-that made it illegal for any federal agency, public univer- sity, defense or other federal contractor, or any other institution or activity that received federal funding to discriminate against anyone "solely by reason of ... handicap."

When sociologist Richard Scotch later studied the act's leg-

islative history, he found that congressional aides could not even remember who had suggested adding the civil rights protection. But the wording clearly was copied straight out of the Civil

Rights Act of 1964, which ruled out discrimination in federal programs on the basis of race, color, or national. origin. There

had been no hearings and no debate about Section 504. Members of Congress were either unaware of it or considered it "little more than a platitude" for a sympathetic group, says Scotch. Professional and charitable groups representing disabled people were sophisticated in winning multibillion-dollar federal fund-

ing, but had not focused on civil rights legislation.

Roberts and Heumann, however, would soon recognize the

significance of what had fallen into their laps, even if the anony- mous Capitol Hill staffers who had crafted Section 504 had not. The Ford administration would understand the significance of

Section 504, too. The Department of Health, Education and Welfare estimated that compliance would cost billions of dollars

and stalled the issuance of the final regulations. When Ford's

presidency ended, HEW left behind a I85-page draft of the regulations.

66 No Pity

The new president, Jimmy Carter, had made a campaign

promise to complete them. But his new HEW Secretary, Joseph

Califano, was quickly alarmed by the scope of Section 504, too,

and assigned a group of lawyers to write new regulations. Carter

and Califano were afraid of the public outcry if alcoholics, drug

addicts, and homosexuals were to claim protection under the

law, although an HEW team already had concluded they would

not be eligible to do so. Califano pleaded for time. Frank Bowe,

the head of the American Coalition of Citizens with Disabilities,

led a group of demonstrators in wheelchairs, holding candles and

praying, to Califano's home shortly before midnight on April 3,

1977, to demand that he sign the regulations immediately and without weakening them. Two days later, activists loosely orga-

nized by Bowe's group staged demonstrations in Washington and eight regional offices of HEW. Three hundred people took

over Califano's offices, and most remained overnight. The HEW

secretary, infuriated, retaliated by refusing to let in food and by cutting off telephone communication. After twenty-eight hours,

the demonstrators left. In San Francisco, however, the sit-in endured and turned

into a national attention-grabbing moment of conviction. Led by Heumann, the demonstrators occupied the sixth floor of the regional HEW office in UN Plaza for twenty-five days. When

they arrived the first day, recalls protester Mary Jane Owen, they

were furious at the condescending treatment they got from

HEW officials, who served them cookies and punch, as if they

were schoolchildren on a field trip. Heumann was angry about

her colleagues in Washington being "starved out" of their occu-

pation. As in Washington, HEW officials in San Francisco, too,

tried to shut down the protest at first by refusing to let in food,

cutting off telephone lines, and even barring entry to attendants.

Some of the most severely disabled protesters were literally

putting their lives on the line, since they risked their health to

be without catheters, back-up ventilators, and the attendants

From Charity to bukpentient Living

who would move them every few hours to prevent bedsores, or

who, with their hands, would cleanse impacted bowels every few

days. None of these deprivations, however, deterred the demon- strators. Instead, they backfired. The protesters' success, in the

face of forceful opposition, only bolstered their euphoria and

determination. Particularly helpful was the fact that protest movements

held a place of honor in the activist atmosphere of the Bay Area. On the fourth day, Roberts, now the state director ofrehabilita-

tion, showed up to give his official blessing to. the sit-in, which

by then had grown to over 120 demonstrators. "We've got to

keep up the pressure," he said from his electric wheelchair on this first of several visits. And then he noted, correctly, that

federal officials "have underestimated the commitment of this

group." On the sixth day, Representative Phillip Burton, who represented San Francisco, demanded that food get past the

guards in the lobby and won the installation of three pay phones.

Two other pay phones on a distant floor had quickly broken down, clogged by uncollected coins. Heumann had found other

more creative ways to get messages out of the building. The demonstrators unfurled banners with their messages from win- dows; deaf protesters used sign language to convey information

to those watching outside; and at one point members of the

Butterfly Brigade, a group of gay men who patrolled city streets

on the lookout for antigay violence, smuggled in a set of walkie-

talkies. On the thirteenth day, Mayor George Moscone brought

in twenty air mattresses and hoses with shower heads, over the

objections of HEW regional director Jose Maldonado, who com-

plained, "We're not running a hotel here."

Nevertheless, food donated by a local Safeway store, Good- will Industries, McDonald's, unions, and civil rights groups was

prepared by the Black Panthers, including an Easter dinner of

meatloaf, green beans, and mashed potatoes that arrived steam-

ing and covered in tinfoil. Several priests lived with the demon-

68 No Pity

strators to help out with everything from preparing food to

doing pastoral counseling and celebrating Easter MilSs. A rabbi

came in to lead a Passover seder. There was even clandestine

help, including food smuggling, from some of the federal em-

ployees who kept working in the building through the twenty-

five days of occupation. One HEW deputy wore a ceramic pin

with a snake twisting through it and promised that, ifhis bosses ordered police in to storm the floor and arrest the demonstrators,

he would surreptitiously warn them beforehand by turning the pin upside down.

The continued miscalculations of HEW officials were clear

again on the twelfth day, when Burton and another Bay Area

lawmaker, George Miller, held a congressional hearing in the

occupied building. Gene Eiderberg, the low-ranking HEW as-

sistant dispatched to California to testify, disclosed that Califano

was considering twenty-two changes in the regulations that

would set up what Eiderberg impolitically described as "separate

but equal" facilities for the disabled. Among the changes, he

said, were exceptions to rules requiring ramps and free access to

hospitals and schools and a proposal to have some disabled

children educated in special schools rather than at regular

schools adapted for them. "We will not accept more segrega-

tion," Heumann told Eiderberg heatedly. "When you erect

buildings that are not accessible to the handicapped, you enforce

segregation. There will be more sit-ins until the government

understands this." Roberts, too, blasted Eiderberg's suggestion

of a "separate but equal world" for the disabled. "Integration is

the key word," said Roberts. "People with disabilities have to come back into our society." .

The San Francisco sit-in marked the political coming of age of the disability rights movement. Disabled people had risked

arrest and their health by turning to civil disobedience tactics

and had surprised a nation--and themselves-with their own

power. The protest built on the early efforts at cross-disability

From Charity to ImupenJtnt Living

activism by the CIL. "People went into that building with some

kind of idealism, but they didn't have much knowledge of other

disabilities," says Mary Jane Owen, who stayed for the twenty-

five days. "Up to that point you had blind organizations, organi-

zations for deaf people, for wheelchair users, for people with

spina bifida or people with mental retardation."

Such parochialism changed at San Francisco. On the sixth

floor of the federal building, demonstrators created their own

disability city, a mini-Woodstock in close quarters where there

was no privacy. They not only came together in the joint recog-

nition of their second-class citizenship, but became close friends

and administered to each other. One young woman, who walked

on crutches, fell in love with the attendant of another demon-

strator. One night the young woman and a dozen others sat in

a circle during a typical late-night talkfest. They went around

the circle, each saying what they would ask for if given one wish.

"For Califano to sign the regs," said one. "For a hamburger,"

said someone else. Then it was the young woman's turn. "I used

to know what I would wish for," she said. "I wanted to be

beautifuL I wanted to stop being a cripple. But now I know I

am beautiful." Says Owen, "We all felt beautiful. We all felt

powerfuL It didn't matter if you were mentally retarded, blind,

ot deaf. Everybody who came out felt, Weare beautiful, we are powerful, we are strong, we are important."

On April 28, 1977-four years after the law had been passed--Califano caved in to the protest that showed no signs of

diminishing and signed the regulations, without changes. And

on April 30, the protesters marched out together in victory-

thrilled to have won, but bittersweet at seeing their idealized

disability city end. They left singing "We Have Overcome."

At the same time, Califano signed the regulation for the

Education of All Handicapped Children Act. Congress had

passed it in 1975, but Califano had blocked it, too, along with

Section 504. When he signed the twO together, schools were

~ ~~

required to guarantee the best possible public education-in- stead of the inferior home teaching Roberts and Heumann had been forced to accept-to every disabled child. This gave angry

parents a new tool to demand quality schooling, alongside non-

disabled children, for their disabled sons and daughters. The new law would give rise to a new generation of well-educated disabled children, who then went on to college in record num- bers.

Backlash

Yet the movement that seemed so promising as the demonstra- tors left would soon falter. What existed in the San Francisco

area simply did not exist elsewhere. Although nearby Berkeley had already been labeled a "mecca for the handicapped" by the press, other communities did not have the center of activism that

Roberts and Heumann had helped build in California.

Shortly after Califano signed the regulations, costs would come up time and time again as a reason for denying full rights, no matter how hard won, for disabled people. News stories

attacked the Section 504 regulations, for example, as an instance of costly and nit-picking federal rule making. Newspapers

widely reported the outrage of people in Rudd, Iowa, a farming

community of fewer than five hundred people. An HEW re-

gional official had informed the town that its public library had

to be made accessible. Town officials said it would cost $6,500 to build a ramp, even though no one in the town used a wheel-

chair. As historian Edward Berkowitz would later note, there was a sudden realization that antidiscrimination measures for people with disabilities carried a price tag. This was quite differ- ent from the black civil rights movement, where the end of

separate accommodations had meant financial savings. "Admit-

ting Jame,s Meredith to the University of Mississippi cost noth- .J

ing i~ an economic sense," Berkowitz wrote. "All of the costs

From Charity 10 iluupmtimt Living 71

were political. Meredith required courage to attend classes, not ramps and wide toilet stalls with grab bars." But "to admit

James Meredith's handicapped counterpart to a university would

cost money rather than save it. It would mean that the physical plant would need to be expanded or modified, and it would require the university to pay the administrative cost of comply-

ing with the federal regulations." Architect Ron Mace of Barrier Free Environments says uni-

versity officials and others wildly overestimated the cost of ac- commodating disabled people. North Carolina education

officials, says Mace, estimated it would cost $ 1 5 billion to make state university buildings accessible. In fact, many changes were simple and inexpensive. To accommodate students in wheel- chairs, universities moved classes to ground floors rather than install elevators to carry students to higher floors. The total cost

to the state, Mace says, turned out to be only $ 1 5 million. A 1982 study for the Labor Department, too, found it was "no big deal" to accommodate disabled workers, since 50 percent of changes in the workplace cost little or nothing. A company, for example, could change a wheelchair user's work hours to con-

form with the schedule of lift-equipped buses. Another 30 per- cent of the accommodations were achieved for between $ 100 and $500 per employee-these included such ideas as giving a tele-

phone headset to a quadriplegic telephone operator, At the high

end were the 4 percent of changes that exceeded "the low figure of$2,000 [per employeeJ." These low costS would later win over a generation of businessmen as well as disabled people. But in

the years immediately after Califano signed the Section 504 regulations, there were still fear and concerns about limits on

federal funding. The courts, so crucial for advances in the black civil rights movement, proved less hospitable to disabled people. The Supreme Court, in Southeastern Community College v. Davis, ruled that a deaf woman, Frances Davis, could be denied admis- sion to a nurses' training program at a North Carolina commu-

72 No Pity

nity college on the ground simply that her deafness would

prevent her from participating in clinical training. Disabled

people were not insisting that they be hired for jobs they could

not do. Davis argued her deafness did not prevent her from

going to school or being a nurse, unless she was refused accom-

modations along the way.

In 1980, with the election of Ronald Reagan, there was an administration in place that would review the regulations con~

sidered ominous to business and government agencies, particu-

larly Section 504 and the Education Act. By 1984, sociologist

Scotch would write that "the effectiveness of the disability rights

movement appears to have peaked in 1978" and that since

Reagan's election "the decline in influence has continued and

quickened. "

It would be several years after the San Francisco sit-in before

the independent living movement, as it started in Berkeley,

would grow across the country. But once it began to spread, it

spread rapidly. In 1977, according to disability policy expert

Margaret Nosek, there were just fifty-two independent living

centers in the United States. Within a decade, there would be

close to t1:tree hundred, all bringing a similar fervor of advocacy

and group activism. Most modeled themselves after Berkeley's

center, which not only had the distinction of being the first

independent living center but was considered to be the most

activist and most thriving. By 1976, one reporter noted, the

center was already serving "some one thousand disabled persons

with a variety of programs, including housing and transporta-'

tion assistance, crisis counseling, attendant and reader referrals,

wheelchair repair, mobility training for the blind, a computer

training project, and an education program for rehabilitation

professionals." By 1988, the center reported it helped 1,807

clientS who received an average of eighty-one hours of assistance

throughout the year. Three of every four clients lived in poverty.

A key moment came in 1978 when Congress, listening to

testimony from Roberts, gave the federal commissioner of Reha-

From Charity to InrJependm! Living 73

bilitation Services the discretionary power to award money to

the states to operate independent living centers. This assured a

stream of money so that disabled people would have a significant

role in running their own programs: However, because the cen-

ters depended on federal dollars, many over time were forced to

tone down their overt political activism.

The proliferating independent living centers spread the new

philosophy of the disability rights movement to disabled people,

their families, and disability professionals in cities, towns, and

even isolated rural communities across the country. They pro-

claimed a new ideal of independence. The centers argued that no

one-not even doctors or therapists-knew more about the

needs of disabled people than disabled people themselves. Above

all, the centers provided a model of disabled people running

their own self-help programs, making decisions for themselves.

The post-San Francisco generation of disabled Americans

would be the beneficiaries of the Education of All Handicapped

Children Act and the new sensibility of the independent living

movement. Disabled children who began school in 1977-the

first group to be assured rights--would start graduating high

school in the late 1980s. It was no accident that the time of their

leaving school-for a world where the rights of disabled people

were not protected as they had been in school--became a period

of new disability activism. As a group, this protected generation

was more self-assured about standing up for themselves than had

been the more downtrodden generation that preceded them. The

Gallaudet student protests and the passage of the Americans

with Disabilities Act, an expansion of Section 504, would pick up where the brief flurry of mid- 1970S disability rights activism

of the San Francisco sit-in generation had left off. These events in the late 1980s and early 1990S would bring about a renewed

public sense of the minority identiry of disabled people and carry

on the self~help and activist vision that had taken root in Berke-

ley.