This material was originally developed for Life On Wheels. It was removed from the book entirely because of space - there is so much important material regarding disability, that the draft manuscript was simply too large. Much to the disappointment of myself and my editor, the History of Disability chapter had to be cut.

There was also a problem of citation with the early history material. My initial research led me to a paper by Thomas Comptom, quoted in the text to follow here. Unfortunately, it was an unpublished paper, and I have not in the interim investigated other sources. I cannot claim that material to be finally authoritative.

I felt that understanding the evolution of disability attitude and our role in society was an important foundation for the rest of the book. Here it is for your enlightenment. I hope.

Gary Karp

Early history

For much of human history in Western society, a person with a disability was considered a burden on others—a drain on resources who put nothing back. A family’s sense of honor was thought to be compromised. They would be spurned by the community. The expense and time of providing for a disabled member would reduce the family’s ability to live up to community standards. There was great pressure to institutionalize a person with a disability (once this option even existed), to allow death from an illness, or even end his life by euthanasia.

Plato stressed the association of disease with moral imperfection and evil. The Bible promoted this view, depicting disability as divine retribution for sinful behavior. Leviticus 21:17 says, “Whosoever that hath any blemish, let him not approach the altar to offer the bread of his God.” Deformed animals could not be used for sacrifice. Our collective consciousness has been imbued with the message that we are not spiritually worthy if we are physically flawed.

Playing the fool

To early Greeks and Romans and on into the Middle Ages, people with disabilities were a source of humor. People with mental impairments were kept by the royal courts for entertainment. Court jesters might have had a physical deformation, yet could perform feats such as acrobatics and juggling. Entertainment was a rare path to independence for a person with a disability, at a time when the only other options were to be a beggar or a burden to one’s family. Some entertainers even gained privileged household positions.

Thomas Compton, in his paper “History of Disability” writes:

The first of Rome's emperors, Augustus (died 14 A.D.), kept a hunchbacked buffoon, but “horrible freaks and monstrosities” were favored by most aristocrats. A special market, the Forum Morionum, catered to Rome's tastelessness. The very survival of people with disabilities attests to how much they were in demand, for among Romans were “priestly executioners who dispatched monstrous children at birth by exposure or ritual sacrifice.”

The Roman Empire proved to be a short-lived period of employment opportunity for someone with a disability. In 235 A.D. Emperor Alexander Severus banished all such individuals from Rome. Onetime court fools wandered the empire, resorting to performing or begging on the streets of the cities for survival.

During the Middle Ages another notion about disability was considered. Perhaps a disability was not punishment from God but an expression of evil through the Devil. At the same time the Christian church developed some charitable motives, in particular for the blind and amputees. The Crusades (beginning in 1096) ensured a steady supply of these victims—the only kinds of disability likely to survive the traumatic injuries of war. Traumatic injury such as spinal cord compression, birth defect, polio and other diseases were far more likely to be fatal, so did not add to the population of the disabled.

Notes Compton:

The most visible and feared of medieval cripples were lepers, perhaps because the concept of contagion attached itself to the disease early on, or because it can cause blindness, amputation, and other conditions.

Lepers were kept out of city walls, and forced to gather in isolated colonies. Leprosy reached epidemic proportions in the 13th and 14th centuries, with 19,000 leprosariums in Europe by the year 1200. In 1321 in France a rumor spread that lepers plotted to poison the waters. This was never proven, but King Philip V ordered that:

To cleanse the earth of the criminal and superstitious leprous fester, lepers and Jews alike should die in purifying flames.

This was possibly the worst mass murder prior to Adolph Hitler.

You're against the law

Life with disability got worse as Europe, North Africa, and the Near East were ravaged by plagues. In response, statutes evolved in mid-14th century England regarding vagrants and beggars who were feared as plague carriers.

A person’s value at this time was based on his ability to work. A 1349 English law read:

Because many beggars, as long as they may live of begging, do refuse to labor, giving themselves to idleness and vice, and sometimes to theft and other abominations; none shall under the color of pity or alms, give anything to such, which may labor so that thereby they may be compelled to labor for their necessary living.

What had just become a matter of Christian charity was now forbidden in the interest of wage labor, a system just emerging at the time. In effect, those who were disabled were branded as thieves and wastrels. Society would not bear the burden of caring for them. Those thought able to work might easily have been sent off to the galleys as slaves.

Other laws defined boundaries within which beggars would be allowed to function. In 1531 England, Henry VIII's parliament segregated people with disabilities in separate districts, and later attempted to restrict alms-giving to undesirable vagrants while allowing “lepers and bedridden creatures” to receive of the public good will.

Monasteries in medieval Europe were willing to accept a number of needy souls within their walls as servants or even as monks. In one case, Pope Gregory XIII charged the Arch Confraternity of the Holy Trinity for the Care of Pilgrims and Convalescents with clearing all beggars from the city. Those truly able-bodied were sent away to work for their livelihood; the truly crippled and unable to work were to be maintained in the monastery of Saint Sistro. But when 850 cripples were quickly collected and taken to the monastery, Gregory's plan was swiftly canceled, and Rome was again filled with “importunate and clamorous beggars” according to Compton.

Charity hospitals were also invented in the Middle Ages. Hardly a place of treatment, much less rehabilitation, they functioned as nightmarish storehouses. The number of beggars continued to rise. The numbers on the streets in 17th century Paris became so severe—as many as 40,000—that the founding of a general hospital to deal with them barely made a dent. Other ideas began to take form. One creative suggestion was to locate deformed persons near the blind who would not be offended by them.

Early American history

Although the London City Council went so far as to raise money for the purpose of shipping the poor and afflicted to Virginia, America was not an attractive destination for the European cripple. Life in the New World was tough enough for anyone, and there were as yet few doctors on hand. Even those injured or stricken during the trip had little option for treatment or support.

The British notion of shame carried over to the colonies. But rather than being jailed or trapped in asylums, many colonial disabled were sheltered in the back rooms by their families who were ashamed of not living up to the frontier ideal. Sometimes people with disabilities were deported back to England.

After the Revolutionary War the federal government helped the states care for their disabled with a system of hospitals which eventually evolved into the present day Veterans’ Administration hospital system. The Continental Congress also agreed to pay for half the pensions of disabled soldiers. This was the precedent for what was to be a tradition of programs in support of people disabled in the course of war.

Not that life was much better as a wounded soldier. Some colonial towns established almshouses for the poor and disabled where people with all sorts of physical and mental disabilities were thrown together with criminals in very poor conditions. In response, a Boston schoolteacher named Dorothea Dix campaigned for reform in the 1840s, getting the states to take over these institutions where some—particularly those with mental retardation—were being treated as little more than animals.

Beggars and tramps were regarded to be criminal enough for laws regarding them to be on the books in America by the early 19th century. Known as “ugly laws,” these rulings originated in the colonies and moved west with the advancing growth of the country. One example from the Chicago Municipal Code read:

No person who is diseased, maimed, mutilated, or in any way deformed so as to be an unsightly or disgusting object or improper person to be allowed in or on the public ways or other public places in this city, shall expose himself to public view, under a penalty of not less than one dollar nor more than fifty dollars for each offense.

Although the fools and jesters of medieval times had largely disappeared, the circus sideshow had survived and found a revival in the 19th century. Performing and being put on view as freaks remained an “opportunity” for disabled people. Hardly a position of status, it nonetheless allowed them to earn their own keep off of the streets and free of the laws which continued to harass them. For some, their lives were even satisfying and secure. Although the shows were voyeuristic, they at least began to bring disability back into the public consciousness in terms other than being punished by God, tools of the Devil, infectious carriers of the plague, or vagrant criminals.

More war heroes

Wartime would once again bring a higher level of awareness to the country as the Civil War produced large numbers of disabled veterans. A home for disabled Union soldiers was established in 1866. States found themselves spending significant funds for artificial limbs, and developments in orthopedic medicine were fueled by the needs of so many injured men. But the demands of sheer volume and the corresponding monies required pushed care for people with disabilities from the reform-minded charitable community back into the hands of State government. Quality of care fell once again. Those with disabilities were still likely to be isolated and abused.

The work of Gregor Mendel in genetics raised the specter of disabilities being passed on in the gene pool. Likewise, Darwin’s writing about the “survival of the fittest” was taken to justify allowing the weaker members of society to disappear. Why care for people with disabilities if it is the natural order of things that they should die? Euthanasia, selective breeding, marriage limits, sterilization, and segregation of handicapped persons were measures actually proposed in 1911 by the American Breeders' Association.

A significant change in broad social attitude came with the first World War. Suddenly there was an even larger population of disabled war heroes, many more of whom survived thanks to medical advances. Operating techniques, management of infection, and pain control were credited with fostering the need for the federal government to establish the Veterans Bureau in 1921. In 1890, there were only five rehabilitation hospitals in the U.S. By 1920, there were nearly 40.

The labor union movement was also growing in the United States at this time, drawing more attention to victims of industrial injuries who also added to the ranks of people with disabilities. Legislation which provided for vocational training and counseling was passed in 1918. Charitable groups, including the American Red Cross joined the effort to offer training and employment.

During the Great Depression, in what is considered the first act of public protest by people with disabilities, a group calling themselves the League for the Physically Handicapped led three hundred pensioners—mostly with polio—in the occupation of the Works Progress Administration offices in Washington. They felt they were being unfairly passed over for jobs.

Industrialization and the growing urban population of the country were favorable conditions for the polio virus, swelling the disabled numbers yet more and producing our first—and thus far, only—disabled American president.

Franklin Delano Roosevelt

Born into wealth and descended from a previous president, Franklin Delano Roosevelt led a charmed life. A successful attorney, navy officer, vice-presidential candidate, and a handsome eligible bachelor until his marriage to Eleanor, he had served in the government as an Assistant Secretary of the Navy.

Having passed off symptoms of back pain, over the course of a single day in August, 1921, Franklin Roosevelt was suddenly unable to stand under his own power from the effects of the poliomyelitis virus. After a severe onset, six week hospital stay, and a period of convalescence, Roosevelt regained the strength he had lost in his arms, full sensation in his body, and normal bowel and bladder function. He simply could not walk.

All the while he kept in touch with politics, though the work of keeping his political career alive was largely in the hands of aides and his wife who began a considerable public speaking career. He worked hard at his therapy and exercise, building his upper body strength. According to historian Hugh Gallagher—also a polio survivor—in his definitive book, FDR’s Splendid Deception:

From 1921 through 1928, walking again was to be Roosevelt’s principal interest, major goal, and full-time occupation.

A favorite getaway spot for the family had been a resort called Warm Springs in Georgia where the waters were thought to be therapeutic. Ultimately FDR bought the property to establish a rehabilitative retreat. Unlike most institutions helping people with disabilities, Roosevelt realized that their needs went beyond the medical. Writes Gallagher:

Roosevelt seemed to understand that rehabilitation of the polio patient was a social problem with medical aspects.

Warm Springs offered a program which emphasized functional training, and so played a role in the development of modern rehabilitation philosophy.

FDR’s first public reappearance was at the 1924 Democratic Convention where the crowd watched in hushed anticipation as he made a grueling 15 foot walk to the podium on braces. He made it, of course, feeling that nothing was more important than to demonstrate he had the capacity for leadership. He would not allow himself to be seen as a cripple.

In 1928 he ran for Governor of New York State, and embarked on the physically demanding campaign trail. He won the election, and in his 1929 annual message to the state legislature he campaigned for funding of rehabilitation for the handicapped, saying:

As a matter of good business, it would pay the State to help in restoring these cripples to useful citizenship.

But the legislature showed no interest, and the issue was soon lost in the Great Depression which suddenly struck the country.

A strong image

In 1932, Franklin Roosevelt was elected President of the United States. But attitudes were not yet sufficient to allow him—politically or culturally—to be open about his inability to walk. He allowed himself to be photographed in his wheelchair only twice. For the most part, he had the tacit agreement of the press to share in the hiding of his limitations. He could convincingly appear to walk using leg braces and the strong arm of his son or certain aides, but these demonstrations were performed with great physical effort.

A telling example of the efficiency of this system to obscure his disability would occur at White House dinners. By the time guests arrived at the table, FDR would already be seated at the head. Afterwards, Eleanor would escort the guests down a staircase, stopping to describe paintings and telling bits of White House history. By time the guests made it to the sitting room, the President would be sitting in his favorite chair.

It doesn’t appear that FDR was ashamed of his disability, but rather that he simply preferred not to be identified by it. At the White House, he spent his long work days in a wheelchair of his own design which he could wheel himself (as compared to the existing model which was based on the assumption that a disabled person always required assistance).

FDR was involved in a number of fundraising activities. He gave his name to fundraising by the Warm Springs therapeutic retreat. He established the National Foundation for Infantile Paralysis in 1937; Jonas Salk—who later developed the first polio vaccine—was a funding recipient. In the first March of Dimes campaigns to raise money for research and support of families, dimes were sent to the White House.

Roosevelt championed the Social Security Act first passed in 1935, although it wasn't until 1954 that disability benefits were included.

During World War II, FDR continued to demonstrate his capacity for a strenuous schedule without allowing his disability to interfere. He traveled often; across the country inspecting munitions plants, to international conferences, and visiting troops. On one occasion he broke with his traditional rule, allowing himself to be pushed in his wheelchair through an amputee ward. Gallagher writes, “He was as crippled as they were, and he wanted them to see that.”

Why not more change?

One can reasonably wonder why the fact of a disabled president did not accomplish the opening of our society to wheelchair users. Why did it take thirty years for accessibility laws to become established? The increased wartime population of amputees, paraplegics, and quadriplegics heighten the mystery, representing as they did a greater need for public access. Yet after Roosevelt’s death, the ramps which had proliferated throughout Washington were taken down. Even his home at Hyde Park was rendered inaccessible by the National Park Service during its renovation for public visits.

But the folding wheelchair was a recent invention, still quite bulky, and cushion technology which would ultimately allow much longer periods of sitting without danger of skin breakdown had yet to appear. The disabled population of the day could not easily get out in the world. They did not yet represent a significant political constituency or have the capacity to lobby on their own behalf. These things would come later.

In the 1990s, a memorial was built in Washington D.C. to honor Roosevelt. To the shock of many people in the disability community, there was no depiction of the president using his wheelchair. They campaigned aggressively to the legislature, and convinced senators and representatives there should be another statue. It may have been necessary back then to hide his disability, they argued, but now there is value in bringing it out into the open:

In those days, there was a great deal more discrimination—some thought that if you didn't have a healthy body you didn't have a mind—certainly not a mind to guide a powerful country. And so, he had to hide the fact that he couldn't walk. In those days the media respected his desires and position. He kept it a secret, but he proved that a disabled person could lead a country through tough times. And I think that that is a powerful message for 1998 and beyond.

Another point of view is that Roosevelt's wishes should be respected, regardless of the change in public attitudes toward disability:

I disagree with the decision to add an additional statue to the Roosevelt Monument which will depict him in a wheelchair. This is misguided attempt to make people in wheelchairs feel better about themselves and goes against the explicit wishes of Roosevelt and his family.

Another war and lots of change

World War II provided another leap in the history of disability. The first antibiotics—sulfonamides, penicillin, and streptomycin—raised recovery rates of injured soldiers to 95%. The new medical specialties of physiatry—or physical medicine—and rehabilitation were spawned. Spinal cord injuries were now survivable, and a community of physicians and therapists became available to aid people in learning to adapt.

Rehabilitation medicine was redefined during the war, in great part thanks to the efforts of doctors Howard Rusk and Henry Kessler. A rehabilitation institute in Kessler’s name still operates in New Jersey, gaining recent fame for its treatment of Christopher Reeve, and a center in New York City is named for Rusk. These men operated on the then radical idea that a group of services—including physical and occupational therapy—should be assembled with the goal of returning a person to an active life.

Things start to change quickly at this stage. The folding wheelchair became widely available, and many veterans were able to gain new skills through the G.I. Bill which provided money for education. They were to become active, tax-paying citizens.

In 1946 the Paralyzed Veterans of America was established. They continue to be highly active in disability policy matters, medical research, architectural access, athletics, and other areas.

In the same year, President Truman established what is now The President's Committee on Employment of People With Disabilities. Its mandate is to help businesses to hire people by means of seminars and support materials to explain the real potential of a disabled employee. Employers were helped to accommodate a person’s needs for access and workspace design, address unique issues of health care and coverage, and discover how loyal and productive an employee pool is available from the disabled ranks.

A college education makes a tremendous difference in the ability to be independent, and to be a full participant in the society. This boundary was crossed when The University of Illinois was the first to make their campus accessible to people with disabilities after experiencing demonstrations by disabled activists.

The movie industry was also to feed the popular gestalt. The first sympathetic—and realistic—portrayal of disability came in 1946 with The Best Years of Our Lives. It depicts a sailor who lost his hands but adapted with great skill and spirit, despite his fears that his girl would not be able to accept him. The young woman demonstrated that she was loyal, not put off by his prosthetic arms, and perfectly willing to be his wife.

Disability activism gained momentum thanks to the efforts of parents who formed groups like the United Cerebral Palsy Association in 1948 and the Muscular Dystrophy Association in 1950. As more children survived with disabilities, parents became vocal in their objection to institutionalization. They wanted their children to grow up in the community, to be educated, to have full lives. They lobbied in Washington and won the development of a federal bureau for the handicapped in 1966. In 1970, funds became available for the first time to train special education teachers and begin to integrate disabled children into the classroom.

The ranks of people with disabilities swelled suddenly in the 1950s with another polio epidemic. Cases reached 50,000 in some years and averaged almost 38,000 annually between 1951 and 1955. Disability culture took a giant step backward as the polio experience spawned the fundraising telethon and its primary icon, the poster child. In his book, No Pity, journalist Joseph Shapiro writes:

No other symbol of disability is more beloved by Americans than the cute and courageous poster child—or more loathed by people with disabilities themselves.

Although a vaccine was eventually found, polio left in the American psyche an image of tragedy, pain, and contagion which is typically ascribed to anyone in a wheelchair. The deep-set fear of being “crippled” continued to limit access to all aspects of a normal life in society. There were many political frontiers that needed to be carved, so the now larger number of active disabled Americans began to participate in the political process. Neither the Civil Rights Act of 1964 nor the Voting Rights Act of 1965 gave any consideration to the needs of people with disabilities. They had to do it for themselves.

In the 1960s, a general spirit of activism was bred by protests against the Vietnam War. Attitudes were changing about the roles we play in society. If it was possible to object to other established norms, perhaps the needs of a disabled community could be taken on too. As of the early 70s, the disabled community caught on, and became actively political.

Ed Roberts

Ed Roberts was 14 years old when he contracted polio. Spending 18 hours a day in an iron lung, he was offered no hope by doctors or his family that he would ever attend college—much less marry. Life seemed bleak enough for him to attempt suicide by refusing food. He dropped to fifty pounds. He ultimately survived, but in the process had asserted his right to choose.

Roberts attended high school at first by telephone, finding a new appreciation for the importance of education. He improved enough physically to attend his senior year only to face his first experience of discrimination. The school principal tried to deny him his diploma because he had not completed driver’s training or gym class. He fought back, with the aid of his labor organizer mother, Zona. He won his diploma—and his first political fight of many to come.

After two years in community college, he applied to the University of California at Berkeley, the best place to pursue his interest in political science. Again, he faced resistance because of the severity of his disability. The California Department of Rehabilitation refused to cover his tuition. His counselor believed that investing in his accommodation would be a waste of money since she doubted he would ever work. Roberts tapped the power of using local media attention to influence the decision of the state agency. He won again.

Reliant on a manual wheelchair, and only able to be away from the iron lung for hours at a time, he would need to reside at Berkeley rather than his home thirty miles away. But no dormitory building could support the weight of the iron lung. Berkeley’s director of student health services found the solution—Roberts would take up residence in the student infirmary. Eventually twelve disabled students would reside there by 1967, calling themselves The Rolling Quads.

The development of the motorized wheelchair would finally give Roberts control of his own mobility. He got on with his life, falling in love, and fighting more battles over his disability. The Rolling Quads continued Roberts’ penchant for activism. When the main shopping street in Berkeley was to be repaved, the group won a commitment of $50,000 for the installation of curb cuts, uncommon at the time.

Jean Wirth, Roberts’ counselor at community college, had developed a program to promote the ability of minority students to remain in school. She was invited by a Washington official to establish the program on a national scale, and invited Ed Roberts to fly to the capital to help her incorporate the needs of disabled students. In 1970, the Physically Disabled Students’ Program (PDSP) was started with federal funds.

PDSP accomplished a great deal to increase the independence of disabled students at UC Berkeley. Services ranged from wheelchair repair to guiding people through the college bureaucracy, from finding housing to hiring personal assistants. As awareness of their activities spread, people with disabilities outside of the university began to ask for help. Since the PDSP rarely turned away any request for help, their resources were quickly exceeded. Roberts and other PDSP leaders solved the problem by setting up a parallel program for non-students. This would prove to be the beginning of the Independent Living Movement, discussed later in this chapter.

By now an experienced organizer, Roberts’ next assignment was the directorship of the California Department of Rehabilitation, at his own suggestion to Governor Jerry Brown. Joseph Shapiro writes, “Roberts delighted in the irony of being the chief of the agency that a decade and a half earlier had deemed it ‘infeasible’ that he would ever hold a job.”

In the meantime he had married his former physical therapist, Catherine, and produced a son. It was by now absolutely clear to him—and others who witnessed him—that the most severe disabilities have little to do with what one can accomplish.

Full-scale demonstration

Surviving two presidential vetoes, the Rehabilitation Act of 1973 was finally passed. It protects people with disabilities from discrimination by the federal government and their contractors. The key provision of the bill is Section 504, a small bit of text that almost went unnoticed. According to Joseph Shapiro in No Pity, it was added on as “no more than a legislative afterthought.”

Section 504 said that no federal agency, public university, federal contractor, or entity that received federal funding could discriminate “solely by reason of handicap.” Federal funding is pervasive enough for this to have far-reaching effects. This was a historic first, and it happened without any lobbying from the disability lobby, no hearings or debate. It was the first legislation to address disability civil rights.

Section 504 got noticed soon enough. Disability activists realized what a potent tool was suddenly in their hands. Unfortunately, the government did too, as the Department of Health, Education and Welfare (HEW) estimated that compliance would cost billions of dollars. The hot potato landed in the hands of a new president, Jimmy Carter, who had made a campaign promise to issue the regulations which would initiate the measure. But the Secretary of HEW, Joseph Califano, asked for more time. He and Carter were concerned that alcoholics and drug addicts would seek protection under 504, a concern that continues to haunt the Americans with Disabilities Act these days.

They began to consider ways to dilute the regulations, spurring protests. Demonstrators held a candlelight vigil at Califano’s home and two days later occupied his offices in Washington D.C. The Secretary was enraged, refusing them food and cutting off communication. The group chose to leave together after 28 hours, rather than gradually as people would be worn down by hunger, or worse.

Such protests were not limited to the nation’s capitol. Concurrent—and also short lived—demonstrations took place in New York and Los Angeles, but San Francisco would prove to be the site of greatest drama.

One of the key players was Judy Heumann. As of this writing, Heumann is the director of the government’s Office for Special Education and Rehabilitation Services in the Clinton administration, a cabinet-level post in the Department of Education. A polio survivor, she and her parents fought a local school who refused to take her as a child because they considered her a fire hazard. She faced the same kind of discrimination on graduation from college when the New York Board of Education tried to deny her a teaching certificate, another battle she won. Inspired into activism, Heumann organized the group Disabled In Action, came to California to work with Ed Roberts at the original Independent Living Center, and joined him in co-founding the World Institute on Disability. Now she is at the helm of a $6.5 billion dollar government agency.

In 1977, Heumann was part of the group which led the occupation of the San Francisco offices of HEW, an action which was to last for 25 days, a record which still stands for occupation of a government property.

When protesters arrived for a meeting at HEW in San Francisco they were given cookies and milk, treated as if they were schoolchildren. Furious at the insult, they occupied the offices as 750 federal workers continued to arrive at work each day. It began with less conflict than the Washington action, as protesters were allowed to come and go for “medical appointments,” according to the San Francisco Chronicle. An HEW spokesman said: “It’s probably one of the friendliest demonstrations San Francisco has ever had.”

The group that started as seventy grew to 120, and then security people got orders not to allow people to return once they left. Faced being cut off from food, communication, and attendant care, some of the disabled protesters were at severe risk, being separated from backup ventilators for breathing, changes of catheters to protect them from infection, and facing risk of bedsores from lack of properly cushioned surfaces on which to sleep. People with disabilities were risking their lives for a cause they knew had to be fought.

They were also making considerable personal sacrifices. Lydia Larson was a San Francisco Public Utilities Commissioner at the time who had been invited to speak at a rally preceding the occupation. She stayed on with the group, skipping her final exams at law school.

Ultimately, attendants and equipment were allowed in, as the federal authorities did not want to repeat the mistake of playing so tough in Washington, making them look bad to the public. Beating up on the disabled did not go over well, and the press was playing up on the sympathy angle. The Chronicle described:

…touching scenes of wheelchair demonstrators who still had use of their arms feeding those who were too disabled to help themselves.

Ed Roberts, now the state Director of Rehabilitation, arrived to show support on the fourth day. San Francisco Mayor George Moscone brought in air mattresses and portable showers—over HEW protests. State Representative Phil Burton demanded that food be allowed in, and won the installation of pay telephones. A group of gay activists managed to smuggle in walkie-talkies. Food was donated by local Safeway stores, Goodwill, and McDonald’s. The Delancey Street Foundation—an organization which aided addicts and ex-convicts—prepared food, probably adding to the concerns of Carter and Califano. The Black Panthers, experienced with their own neighborhood food programs, also prepared meals for the protesters, including an Easter dinner. A rabbi led a Passover seder.

Meanwhile, Califano’s revisions to 504 would propose separate schools for disabled children, and exceptions to rules requiring wheelchair access to schools and even hospitals. It was a “separate but equal” approach, reminiscent of previous treatment of blacks and other minorities which at one time had been deemed constitutional by the Supreme Court until the civil rights act of the 60s set the notion straight.

Said Heumann, “We will not accept more segregation.” Roberts said, “People with disabilities have to come back into our society. I think they have underestimated the commitment of this group.”

A state legislative delegation heard impassioned, eloquent testimony from Ed Roberts, Judy Heumann, Deborah Kaplan, Ralf Hotchkiss, Beverly Bertaina, Kitty Cone and others. Assemblyman George Miller responded to the hearing by saying, “As I see it, the goddamned thing is not negotiable.” This message would be sent back to Washington, with similar support from Senator Alan Cranston.

Califano finally gave in on April 28, signing the regulations without change. The protesters left the building singing “We Have Overcome.” Writes Shapiro, “The new law would give rise to a new generation of well-educated disabled children, who then went on to college in record numbers.” It was no coincidence that disability activism rose in the early eighties as the first college class of graduates who had benefited from the law hit the streets.

The protest was not only a cause for wheelchair users, people with hearing and vision impairments, mental retardation, and other disabilities came together at the protest and learned about each other’s needs. The San Francisco 504 protest had a unifying impact on the disability scene which would enlarge its political scope. It also helped people learn new pride in themselves, regardless of their disability. Mary Jane Owens was present for the full twenty-five days in San Francisco and found that:

It didn’t matter if you were mentally retarded, blind, or deaf. Everybody who came out felt, “We are beautiful, we are powerful, we are strong, we are important.”

From law to reality

Having Section 504 in place was no guarantee that change would take place. People with disabilities and their families still had plenty of work to do to ensure that the provision would be enforced.

Disability civil rights differs from other quests for equality in one particularly crucial aspect. It costs money. To allow people of color their rights to equal access actually saved money. “Separate but equal” had been expensive. Separate bathrooms, separate schools. As much as prejudice remained, the law saved money in many cases.

Not so with disability access. Disability civil rights means building ramps, enlarging bathrooms, widening doors, adding elevators, using tactile surfaces for people with vision impairments, setting aside seats in theaters, paying personnel in corporations to manage disability services, and much more that represents real out-of-pocket costs. There would prove to be a lot of resistance to paying the premium.

Take the farming town of Rudd, Iowa, who were informed that they had to make their public library accessible at a cost of $6,500, although no one in town used a wheelchair. They were not pleased to feel they were forced to spend money toward no good purpose. This example would play itself out in many other scenarios, including places like fire stations, in which the case is made that a person using a wheelchair would never be a fireman, so why should they have to spend the money?

But the cost of access is often vastly overestimated. Architect Ron Mace, a polio survivor, quoted in No Pity, describes North Carolina education officials who believed statewide access would cost $15 billion dollars. It turned out to be $15 million. Many accommodations cost nothing, such as relocating a class to another room, allowing use of private bathrooms until larger stalls were built, or raising a desk to clear someone’s knees. The initial knee-jerk reaction of business and local governments was to assume that construction and expensive equipment was the only way to address the needs of people with disabilities. Experience has proven them wrong.

College campuses would make the same argument as the town of Rudd. “We don’t have any students in wheelchairs,” they would say. In hindsight we know that this was a question of “if you build it they will come.” Now that colleges are widely accessible, thousands of students wheel their way across campuses, supported by an array of disabled student services including attendant support, sign interpreters, and access to technology. 504’s impact has been broad indeed, and is turning out to have been well worth the investment. Many of these people would otherwise be collecting Social Security or other forms of public money, but now are working, paying taxes, and spending money in their communities.

Any law requires enforcement to have real impact. Although the Federal Government was required by law to end discrimination against people with disabilities, there was no means of suing for compensatory damages until the passage of Section 102 of the Civil Rights Act of 1991, "Damages in Cases of Intentional Discrimination." Take the case of Pauline Horvath:

I was hired by the Navy in 1982, with their knowledge and consent that I could use a power chair as an accommodation, as needed, for my rheumatoid arthritis. I was the first person to be hired into the Alameda Naval Civilian Personnal Office with a severe disability. The fact that I was no longer allowed to use my chair in 1988, because new management decided they did not want a wheelchair in their office, is testimony to the need for full compensatory damage laws, for employee protection.

Horvath has won initial judgments in her case, but her experience is evidence that any law is only a beginning, and must be followed up in the courts for real change to take effect.

Not just wheels

Disability issues are not limited to those who can’t walk. The Section 504 protest was perhaps the first example of people with various disabilities discovering their common political interests and capacity for activism. It was the deaf community which was to strike the next chord which would energize the broader disability movement.

In 1988 Gallaudet University in Washington D.C. needed a new college president. Established in 1864 for deaf students, all of its presidents had been hearing men. A group of alumni decided the job search was a rare chance to go to bat for a deaf president. The alumni held a rally, listened to (or watched) speeches by students and faculty, and for the first time the notion of civil rights for the deaf was brought to the forefront.

To them, deafness was not a medical condition, but a culture with a language and a history. This view would continue to make it difficult to create binding alliances with an activist disability community with whom they did not want to fully associate. But in the late 80s, the public was just beginning to discover that existing models of life for people with physical differences were changing.

The university announced its list of three candidates, two of whom were deaf. When the Board of Trustees announced that the one hearing candidate had been chosen for the job, 500 students and alumni who were gathered for the news were enraged. They marched to a nearby hotel where the decision was being celebrated, and made their displeasure known with shouts and signed speeches.

The next day they closed down the school. They took a list of demands to the chairwoman of the trustees—who in seven years had not bothered to learn sign language—insisting not only on a deaf president but also on the chairwoman’s resignation.

The presidential designee, Elizabeth Zinser, a North Carolina college administrator, arrived in town saying she was “in charge,” underestimating the extent of sympathy for the efforts of what she believed to be a small band of demonstrators. The students refused to allow her to speak to the student body, and swore to prevent her arrival on campus, even if they had to lay down on the helicopter pad.

Gallaudet was a federally supported institution. Gallaudet students astutely took their case to Congress where legislators were beginning to recognize the political weight of the disability community. They gained the support of a number of legislators, including then-Vice-President George Bush and Senator Robert Dole, himself disabled without the use of his right arm from a war injury.

I. King Jordan, the popular dean of Arts and Sciences and deaf since birth, initially supported the student protest. After Zinser’s appointment Jordan painfully chose to abide by the school’s decision and accept her nomination. As the protest gained momentum he made the risky decision to recant his support. Zinser soon recognized that she would not prevail and resigned her position. The students won their battle as Jordan was named Gallaudet’s first deaf president. There were no sanctions against the students. They had their victory, and people with disabilities had yet another example of the value of active protest.

The Independent Living Movement

In 1972 the Center for Independent Living (CIL) was incorporated in the showroom of an ex-automobile dealership in Berkeley (where it resides to this day), and the national Independent Living Movement was born. It shared the philosophy of rehabilitation professionals that a person could be seen as a whole, but objected to the medical view of that person as a “patient” which can only benefit from a structured medical setting. Today the preferred terms are client and consumer. Clients use the services of the rehab hospitals and treaters as part of their individual effort to live an optimal life.

Word of the Independent Living Movement began to spread. People with disabilities around the country, hungry for control over their lives, began to call and visit. Berkeley students who worked at the center would return to their hometowns after graduation and start CILs of their own. The Berkeley CIL became the model and the training ground for what came to be a nationwide network.

Says Mary Lou Breslin of Berkeley's Disability Rights and Education Defense Fund:

This concept of a center where people would make their own decisions and it wouldn't be run by social workers was a breakthrough phenomenon.

The early CILs had to hustle for money, combining any sources they could: a university affiliation, corporate sponsorships, and grassroots fundraising. Judy Heumann led a campaign in Washington to get federal funding for independent living centers included in the Rehabilitation Act. 1978's Title VII includes Independent Living Provisions so people could apply to the Federal Government for funds to start a CIL. Says Breslin:

It enabled little communities that would have had a hard time finding seed money to provide core services—things like attendant referral, peer counseling, and housing assistance.

There are now more than 400 Independent Living Centers in a range of sizes across the United States. Many qualify for federal funding—though this is still only a portion of their budgets. There is a national association. An annual conference allows staff from the centers to share ideas, get the latest on political issues, and gain from others' experience in establishing and managing programs.

CIL services

Your local CIL might offer any of a wide array of services, such as:

• Personal assistance referral: A database of people available for attendant support, training for the assistant, training for you in managing your attendant as an employee, and help in finding funds to pay the assistant.

• Housing referral: A listing of apartments and homes in the area that are accessible. They also might assist you with landlord disputes, or help in making the home accessible.

• Employment services: Training in job searching, resume preparation, and interviewing skills. Computer training classes are increasingly common.

• Transportation: Possibly a paratransit service which provides door-to-door rides in an accessible vehicle.

• Financial counseling: Help navigating the labyrinth of benefits from Social Security, Medicaid, State assistance, Vocational Rehabilitation, and private insurance. Classes or individual consultations can assist you to collect the benefits which you are entitled to.

• Legal assistance: Consultation on issues such as employment discrimination, family and child custody matters.

• Peer programs: People with experience offer guidance on topics from independent living skills to the emotional adjustments involved in a new disability. Programs can take the form of an individual relationship or support groups, and are particularly valuable for newly disabled persons and their families.

• Deaf, blind, and mental disability services: Specialized peer support, training, and advocacy; sign language interpreter referral services. Adaptive equipment like Braille readers might be available for use or sale.

• Political advocacy: Training in advocacy skills, entitlements under the ADA, and pursuing rights in the courts.

The Independent Living Movement has helped many people with disabilities of all kinds to pursue their best possibilities and has fostered a growing political constituency.
Independent living movement

The movement is not without its challenges. There continue to be funding issues. After having been spawned by people who were reacting against the government's lack of support for disability issues—such as its foot dragging on Section 504 of the 1973 Rehabilitation Act—many of the larger CILs find themselves reliant on federal funds. It is often a political balancing act where they must take care not to bite the hand that feeds them.

The greatest conflict on the CIL scene is between advocacy and services. The pioneers of the movement are not usually running the CILs anymore; CILs are often staffed by people who see what they do as a job and are not inclined to go occupy an office building to fight for someone's rights.

Yet there seems to be a shift back towards advocacy. Gina McDonald, president of the National Council on Independent Living (NCIL) says in an interview in Mouth magazine:

There used to be a time when you'd say (to an IL), ‘Who's your advocacy person’ and they'd say, ‘Well we don't really have time to do that.’ Yet they have three independent living specialists. Now some of the centers are going back to say, first we'll do our advocacy, then look at everything else.

The two worlds in the IL movement—advocacy and services—are clashing outright in some cases. One notable example is described in the January, 1998 issue of New Mobility magazine. The Tri-County Partnership for Independent Living (TRIPIL) in Washington, Pennsylvania found itself in an outright civil war over the question of services or advocacy. According to the article, “TRIPIL once housed both philosophies, with moderate members working alongside activists.” Both philosophies coexisted, that is, until the day that a group of clients and staff demanded the resignation of eleven board members. Seven of the board members required to resign were disabled, but were thought to be out of touch with the disability community.

Executive director Kathleen Kleinmann was under pressure to curb advocacy in favor of budget issues. But she believed the IL's purpose was advocacy, to be member-directed. So when the board had presented her with a new job description she considered untenable, she announced to the staff that she would either resign or be fired. Supporting Kleinmann, the staff targeted the eleven board members, actually going to their homes or place of work, and refusing to leave until resignations were signed. It was just short of a violent takeover on the part of the advocacy forces. And a troubling example of the present difficulties of the independent living movement.

Like many other movements, disability advocacy has its own internal politics and divisions.

Connection to rehab

How to reach people with disabilities continues to be a challenge. Those who are working and independent tend to feel they don't need support groups or advocacy training. The audience who shows up tend to be those with lower-incomes who are desperate for community, desperate for assistance in acquiring needed benefits. Even many of those never find their way to a CIL. Dr. Maurice Dijkers, director of research at Detroit's Rehabilitation Institute of Michigan, says:

Probably less than 5% of people even know the CIL exists. To a degree people choose not to participate. Once they're discharged, the first thing they want to do is go home and rest up from what we put them through! Four months later, when they're ready to see what's outside their apartment, they've forgotten about CIL.

In a unique program in Ann Arbor, Michigan, the local CIL has developed a very intimate relationship with the University of Michigan rehab unit. They get involved with people from the very beginning of their rehab experience, providing peer support and valuable information. Once the person is released—with considerable adjustments yet to be made—they are not about to forget about the CIL, thanks to the very close contact they had during their inpatient days.

The CIL movement continues to face a great challenge of in defining itself. Certainly, the services and community offered by local centers make a difference in people's lives, but in face of the reality that the culture still expects people with disabilities to not be full functioning members, there is much to be done that takes a little fighting. The movement seems likely to struggle for the foreseeable future with how to strike the appropriate balance.

The Americans with Disabilities Act

The essential difference between the ADA and the 1973 Rehabilitation Act with its Section 504 was that ADA provisions were no longer limited to those receiving government funding. This was legislation for everyone.

It started modestly enough. Thirteen people met in a hotel room, appointed by conservative president, Ronald Reagan, calling themselves the National Council on the Handicapped. The group was led by Bob Burgdorf, Jr., an attorney with a paralyzed arm from polio who had once been refused a construction job since they weren’t “hiring any cripples here.” In the ensuing twenty years Burgdorf had become a specialist in disability law. He had already drafted the basis for the Americans with Disabilities Act, under the auspices of the National Council on Disability.

Justin Dart

Present at the meeting was Justin Dart, who had given up wealth and success in his family’s pharmacy business to campaign full time for the rights of people with disabilities . A wheelchair user from the polio he contracted in 1948, he was shocked into a major life change during a visit to Vietnam when he witnessed a shed full of children with polio left to starve and die from the disease that he shared with them. Ashamed of his advantages, he and his wife, Yoshiko, went to live in Japan, in a mountaintop farmhouse without electricity or water. They studied and meditated and contemplated their place in the world.

In 1974 he returned to Texas and began work as a disability activist. He served on state committees, and eventually was appointed head of the President’s Committee on Employment of People with Disabilities. Dart’s first act was to end the previous use of “Handicapped” in the organization’s title. He ultimately resigned over accusations that he was more interested in disability rights than in employment. His answer was, “I plead guilty. No transportation, no health care, no education, no civil rights—no jobs.”

He and Yoshiko went on to establish Justice For All, a political advocacy organization for people with disabilities. In January of 1998 Dart was awarded the Presidential Medal of Freedom by Bill Clinton.

When it came to the ADA, Dart traveled to every state several times, giving talks, urging the support of any potential advocate. When called the “father of the ADA,” Dart’s response was that “there were thousands of indispensable patriots of ADA.”

Political climate had been shifting

The meeting in 1988 would not have happened had not the political climate been growing ripe.

There was no lobbying body in Washington D.C. representing the interests of the disabled population until 1980 when Patrisha Wright set up an office for DREDF, the Disability Rights Education and Defense Fund based in Berkeley, California. She had previously been hired to head an experimental program to deinstitutionalize people with mental retardation and cerebral palsy. When she responded with approval to the news that two program subjects had been sexually intimate with each other, the program was scrapped and everyone sent back to where they came from. She thus discovered that people with disabilities were having their freedom of choice violated in the most basic ways. She became an activist for disability civil rights, and would play a central role in the quest for the Americans with Disabilities Act. Other key players at DREDF included Robert Funk, its first executive director, and Mary Lou Breslin, still there in the late 90s.

Political resistance was nonetheless present, and it took Evan Kemp, Jr. to meet with then-Vice President Bush to convince him not to be swayed by the alarmist reactions of business groups. Kemp, an attorney and power wheelchair user had graduated near the top of his law school class, yet was turned down by thirty-nine law firms. After his years as director of the Disability Rights Center which was funded by consumer rights activist, Ralph Nader, Kemp knew how to make his point gently but clearly.

Bush, having seen the huge response from the disability community when the Reagan Administration attempted to dilute the education provisions of Section 504, knew that people with disabilities represented a considerable constituency. President Reagan’s “deregulation fever” would not touch Section 504. Bush and Kemp discovered a mutual respect for each other, and as president, Bush would name Kemp to head the Equal Employment and Opportunity Commission (EEOC) in 1989. Kemp was another key leader who, like Dart, gained crucial support from many sources, including DREDF.

Winning over Congress—and business

In 1988, the bill drafted by Burgdorf’s group received a reaction of dead silence from the 100th Congress, as well as from the press and public. With George Bush in office, Patrisha Wright got involved, and with the aid of Senators Tom Harkin and Edward Kennedy the bill was rewritten. In order to make it politically palatable, they softened provisions such as those that would have required the entire country to be accessible in two years, or would have allowed people with disabilities to sue for punitive damages if they felt they had been discriminated against by a business. The business community would have nothing of such measures, and had the power to stop such a bill dead in its tracks.

Potential opposition by business included the insurance industry, which would have faced massive change if they had to entirely ignore disability in setting terms and premiums for policies. Language was softened in their favor. Says Mary Lou Breslin of DREDF:

One of the failures of the ADA was to not extend it to cover insurance companies. It was a political decision to excuse them from coverage in their programs, in exchange for political support for the rest of the law.

Once again, money proved to be a factor unique to disability civil rights, but now there was some evidence to soften the concern. Businesses who complied with the 1973 act had already discovered that accommodation was not as costly as they had feared. A 1982 Department of Labor study found that half of workplace changes cost little or nothing. Another third of the measures cost less than $500. This was good news, and a useful tool for promotion of the ADA.

The political winds had shifted, too. Businesses might have been concerned that the ADA would lead to an avalanche of lawsuits, but the last thing they wanted to do was appear bigoted. Here was one of those rare moments where the paternal view of disability actually helped. They couldn’t very well refuse the rights of “cripples,” could they? It also helped that there was significant bipartisan support in the Congress and a positive view from the White House. As Joseph Shapiro writes in No Pity, “business had come to see disabled people as a new source of both labor and customers.”

This was a time of considerable alliance among disability groups, including people with AIDS, Tourette’s Syndrome, and other non-mobility related disabilities. All had issues of civil rights which they felt could be addressed under the ADA. There were only a few conflicts within the ranks, such as the desire for wheelchair users to have curb cuts while blind persons prefer curbs so they can distinguish between the street and the sidewalk. Building on the work and philosophies which grew during the 504 campaign, the ADA fight built an even stronger disability alliance.

In March, 1990 there was a demonstration in Washington D.C. where 725 people, many in wheelchairs, gathered in protest in front of the Capitol. Many more would have arrived but for the inaccessibility of trains and buses, and the limits of their modest incomes. A White House aide briefly addressed the crowd, reassuring them that President Bush intended to sign the bill.

Copyright 1999, Gary Lawrence Karp
Not for distribution. Do not copy without permission.

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