History of Independent Living by Gina McDonald and Mike Oxford This account of the history of independent living stems from a philosophy which states that people with disabilities should have the same civil rights, options, and control over choices in their own lives as do people without disabilities. The history of independent living is closely tied to the civil rights struggles of the 1950s and 1960s among African Americans. Basic issues--disgraceful treatment based on bigotry and erroneous stereotypes in housing, education, transportation, and employment -- and the strategies and tactics are very similar. This history and its driving philosophy also have much in common with other political and social movements of the country in the late 1960s and early 1970s. There were at least five movements that influenced the disability rights movement.

 

 

Social Movements

The first social movement was deinstitutionlization, an attempt to move people, primarily those with developmental disabilities, out of institutions and back into their home communities. This movement was led by providers and parents of people with developmental disabilities and was based on the principle of "normalization" developed by Wolf Wolfensberger, a sociologist from Canada. His theory was that people with developmental disabilities should live in the most "normal" setting possible if they were to expected to behave "normally." Other changes occurred in nursing homes where young people with many types of disabilities were warehoused for lack of "better" alternatives (Wolfensberger, 1972).

The next movement to influence disability rights was the civil rights movement. Although people with disabilities were not included as a protected class under the Civil Rights Act, it was a reality that people could achieve rights, at least in law, as a class. Watching the courage of Rosa Parks as she defiantly rode in the front of a public bus, people with disabilities realized the immediate challenge of even getting on the bus.

The "self-help" movement, which really began in the 1930s with the founding of Alcoholics Anonymous, came into its own in the 1970s. Many self-help books were published and support groups flourished. Self-help and peer support are recognized as key points in independent living philosophy. According to this tenet, people with similar disabilities are believed to be more likely to assist and to understand each other than individuals who do not share experience with similar disability.

Demedicalization was a movement that began to look at more holistic approaches to health care. There was a move toward "demystification" of the medical community. Thus, another cornerstone of independent living philosophy became the shift away from the authoritarian medical model to a paradigm of individual empowerment and responsibility for defining and meeting one's own needs.

Consumerism, the last movement to be described here, was one in which consumers began to question product reliability and price. Ralph Nader was the most outspoken advocate for this movement, and his staff and followers came to be known as "Nader's Raiders." Perhaps most fundamental to independent living philosophy today is the idea of control by consumers of goods and services over the choices and options available to them.

The independent living paradigm, developed by Gerben DeJong in the late 1970s (DeJong, 1979), proposed a shift from the medical model to the independent living model. As with the movements described above, this theory located problems or "deficiencies" in the society, not the individual. People with disabilities no longer saw themselves as broken or sick, certainly not in need of repair. Issues such as social and attitudinal barriers were the real problems facing people with disabilities. The answers
were to be found in changing and "fixing" society, not people with disabilities. Most important, decisions must be made by the individual, not by the medical or rehabilitation professional.

Using these principles, people began to view themselves as powerful and self-directed as opposed to passive victims, objects of charity, cripples, or not whole. Disability began to be seen as a natural, not uncommon, experience in life, not a tragedy.

ADAPT

Wade Blank began his lifelong struggle in civil rights activism with Dr. Martin Luther King, Jr. to Selma, Alabama. It was during this period that he learned about the stark oppression, which occurred against people considered to be outside the "mainstream" of our "civilized" society. By 1971, Wade was working in a nursing facility, Heritage House, trying to improve the quality of life of some of the younger residents. These efforts, including taking some of the residents to a Grateful Dead concert, ultimately failed. Institutional services and living arrangements were at odds with the pursuit of personal liberties and life with dignity.

In 1974, Wade founded the Atlantis Community, a model for community-based, consumer-controlled, independent living. The Atlantis Community provided personal assistance services primarily under the control of the consumer within a community setting. The first consumers of the Atlantis Community were some of the young residents "freed" from Heritage House by Wade (after he had been fired). Initially, Wade provided personal assistance services to nine people by himself for no pay so that these individuals could integrate into society and live lives of liberty and dignity. In 1978, Wade and Atlantis realized that access to public transportation was a necessity if people with disabilities were to live independently in the community. This was the year that American Disabled for Accessible Public Transit (ADAPT) was founded.

On July 5-6, 1978, Wade and nineteen disabled activists held a public transit bus "hostage" on the corner of Broadway and Colfax in Denver, Colorado. ADAPT eventually mushroomed into the nation's first grassroots, disability rights, activist organization.

In the spring of 1990, the Secretary of Transportation, Sam Skinner, finally issued regulations mandating lifts on buses. These regulations implemented a law passed in 1970-the Urban Mass Transit Act-which required lifts on new buses. The transit industry had successfully blocked implementation of this part of the law for twenty years, until ADAPT changed their minds and the minds of the nation. In 1990, after passage of the Americans With Disabilities Act (ADA), ADAPT shifted its vision toward a national system of community-based personal assistance services and the end of the apartheid-type system of segregating people with disabilities by imprisoning them in institutions against their will. The acronym ADAPT became "American Disabled for Attendant Programs Today." The fight for a national policy of attendant services and the end of institutionalization continues to this day.

Wade Blank died on February 15, 1993, while unsuccessfully attempting to rescue his son from drowning in the ocean. Wade and Ed Roberts live on in many hearts and in the continuing struggle for the rights of people with disabilities.

These lives of these two leaders in the disability rights movement, Ed Roberts and Wade Blank, provide poignant examples of the modern history, philosophy, and evolution of independent living in the United States. To complete this rough sketch of the history of independent living, a look must be taken at the various pieces of legislation concerning the rights of people with disabilities, with a particular emphasis on the original "bible" of civil rights for people with disabilities, the Rehabilitation Act of 1973.

Civil Rights Laws

Before turning to the Rehabilitation Act, a chronological listing and brief description of important federal civil rights laws affecting people with disabilities is in order.

1964

Civil Rights Act: prohibits discrimination on the basis of race, religion, ethnicity, national origin, and creed -- later, gender was added as a protected class.

1968

Architectural Barriers Act: prohibits architectural barriers in all federally owned or leased buildings.

1970

Urban Mass Transit Act: requires that all new mass transit vehicles be equipped with wheelchair lifts. As mentioned earlier, it was twenty years, primarily because of machinations of the American Public Transit Association (APTA), before the part of the law requiring wheelchair lifts was implemented.

1973

Rehabilitation Act: particularly Title V, Sections 501, 503, and 504, prohibits discrimination in federal programs and services and all other programs or services receiving federal funding.

1975

Developmental Disabilities Bill of Rights Act: among other things, establishes Protection and Advocacy (P & A).

1975

Education of All Handicapped Children Act (PL 94-142): requires free, appropriate public education in the least restrictive environment possible for children with disabilities. This law is now called the Individuals with Disabilities Education Act (IDEA).

1978

Amendments to the Rehabilitation Act: provides for consumer-controlled centers for independent living.

1983

Amendments to the Rehabilitation Act: provides for the Client Assistance Program (CAP), an advocacy program for consumers of rehabilitation and independent living services.

1985

Mental Illness Bill of Rights Act: requires protection and advocacy services (P & A) for people with mental illness.

1988

Civil Rights Restoration Act: counteracts bad case law by clarifying Congress' original intention that under the Rehabilitation Act, discrimination in ANY program or service that is a part of an entity receiving federal funding -- not just the part which actually and directly receives the funding -- is illegal.

1988

Air Carrier Access Act: prohibits discrimination on the basis of disability in air travel and provides for equal access to air transportation services.

1988

Fair Housing Amendments Act: prohibits discrimination in housing against people with disabilities and families with children. Also provides for architectural accessibility of certain new housing units, renovation of existing units, and accessibility modifications at the renter's expense.

1990

Americans with Disabilities Act: provides comprehensive civil rights protection for people with disabilities; closely modeled after the Civil Rights Act and the Section 504 of Title V of the Rehabilitation Act and its regulations.

The modern history of civil rights for people with disabilities is three decades old. An essential piece of this decades-long process is the story of how the Rehabilitation Act of 1973 was finally passed and then implemented. It is the story of the first organized disability rights protest.

The Rehabilitation Act of 1973

In 1972, Congress passed a rehabilitation bill that independent living activists cheered. President Richard Nixon's veto prevented this bill from becoming law. During the era of political activity at the end of the Vietnam War, Nixon's veto was not taken lying down by disability activists who launched fierce protests across the country. In New York City, early leader for disability, fights, Judy Heumann, staged a sit-in on Madison Avenue with eighty other activists.

Traffic was stopped. After a flood of angry letters and protests, in September 1973, Congress overrode Nixon's veto and the Rehabilitation Act of 1973 finally became law. Passage of this pivotal law was the beginning of the ongoing fight for implementation and revision of the law according to the vision of independent living advocates and disability rights activists. Key language in the Rehabilitation Act, found in Section 504 of Title V, states that:

No otherwise qualified handicapped individual in the United States shall, solely by reason of his handicap, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving federal financial assistance.

Advocates realized that this new law would need regulations in order to be implemented and enforced. By 1977, Presidents Nixon and Ford had come and gone. Jimmy Carter had-become president and had appointed Joseph Califano his Secretary of Health, Education, and Welfare (HEW). Califano refused to issue regulations and was given an ultimatum and deadline of April 4, 1977. April 4 went by with no regulations and no word from Califano.

On April 5, demonstrations by people with disabilities took place in ten cities across the country. By the end of the day, demonstrations in nine cities were over. In one city, San Francisco, protesters refused to disband.

Demonstrators, more than 150 people with disabilities, had taken over the federal office building and refused to leave. They stayed until May 1. Califano had issued regulations by April 28, but the protesters stayed until they had reviewed the regulations and approved of them.

The lesson is a simple one. As Martin Luther King said,

"It is an historical fact that the privileged groups seldom give up their privileges voluntarily. Individuals may see the moral light and voluntarily give up their unjust posture, but, as we are reminded, groups tend to be more immoral than individuals. We know, through painful experience that freedom is never voluntarily given by the oppressor, it must be demanded by the oppressed."

Leaders in the Independent Living Movement The history of the independent living movement is not complete without mention of some other leaders who continue to make substantial contributions to the movement and to the rights and empowerment of people with disabilities.

Max Starkloff, Charlie Carr, and Marca Bristo founded the National Council on Independent Living (NCIL) in 1980. NCIL is one of the only national organizations that is consumer-controlled and promotes the rights and empowerment of people with disabilities.

Justin Dart played a prominent role in the fight for passage of the Americans with Disabilities Act, and is seen by many as the spiritual leader of the movement today. Lex Frieden is co-founder of ELRU Program. As director of the National Council on Disability, he directed preparation of the original ADA legislation and its introduction in Congress.

Liz Savage and Pat Wright are considered the "mothers of the ADA." They led the consumer fight for the passage of the ADA.

There are countless other people who have and continue to make substantial contributions to the independent living movement.

References

DeJong, Gerben. "Independent Living: From Social Movement to Analytic Paradigm," Archives of Physical Medicine and Rehabilitation 60, October 1979.

Wolfensberger, Wolf The Principle of Normalization in Human Services. Toronto: National Institute on Mental Retardation, 1972.

 

ALLIANCE OF DISABILITY ADVOCATES

Center for Independent Living

ALERT

Re: Disability Rights Movement History

JUSTIN DART (1930 - 2002)

Few people in the disability rights movement understand the power, importance, and nature of grassroots organizing as well as Justin Dart. For over two decades he has been an advocate for justice, civil rights, and human potential in the United States and the world. In addition to their time, Justin and his wife Yoshiko have dedicated much of their financial resources to the betterment of people with disabilities. They have crossed the country sponsoring forums for a variety of campaigns, including advocacy for the ADA (Americans with Disabilities Act). Through their efforts, thousands of "discrimination diaries" became part of the evidence used to justify the ADA.

Born to wealth and prestige (his father eventually became a member of President Reagan's "Kitchen Cabinet") Justin had a difficult adolescence, and traces the beginnings of his "good days" in life to contracting polio at the age of 18, which left him without use of his legs and required use of a wheelchair. Around the same time he exposed himself to the philosophy of Gandhi, which gave him confidence that he could take responsibility for his life. In 1951, at the age of 21, he entered the University of Houston. Throughout the latter 1950s and the 1960s, with the support of his Executive Assistant and later wife Yoshiko Saji, Dart became a successful businessman in the U.S. and around the world.

Dart visited a Vietnamese institution for children with polio during the Vietnam War, and saw malnourished children packed into a shed infested with flies, urine, and feces. He responded by pledging his life to reform and devoted six years to philosophical reflection and introspection in the mountains of Japan. Dart and Yoshiko returned to Texas from Asia in 1978, soon after which Dart began his career in disability advocacy, participating in the Texas Governor's Committee on the Handicapped, the National Council on the Handicapped, the Rehabilitation Services Administration, the President's Committee on the Employment of People with Disabilities, the ADA Task Force on the Rights and Empowerment of People with Disabilities, and a multitude of local and national demonstrations.

Dart received recognition from President Clinton in the form of the Presidential Medal of Freedom, the nation's highest civilian award. Dart immediately removed the medal to bestow it upon his wife Yoshiko and insisted that it belonged to everyone in the disability rights movement.

 

JUDY HEUMANN

After contracting polio at the age of 18 months, in 1949, Judy Heumann faced numerous obstacles in gaining a decent education. Barred from the public school because she used a wheelchair (a "fire hazard"), Heumann relied on home instruction and then finally attended a segregated school for people with disabilities. She began organizing her fellow classmates before she was even 10 to discuss ways that they could improve their lot. Heumann also earned the loyalty of her peers by assisting many individuals with greater mobility restrictions in tasks such as eating.

With the support of dedicated parents who formed their own organization to fight for their kids, Heumann and several friends eventually made it to a public, non-segregated high school. Heumann enrolled at Long Island University in 1965 and majored in secondary education. Although she excelled in her coursework, college administrators denied Heumann a teaching certificate. Heumann responded with a lawsuit, and won. In addition to going on to be a public school teacher in New York, she used the media attention surrounding her litigation to form an important, cross-disability organization: Disabled in Action. DIA was explicitly political in orientation and focused on such issues as transportation and architectural accessibility.

Heumann obtained a Master's in Public Health from the University of California at Berkeley in 1975. After serving as an assistant to Senator Harrison Williams, she became Deputy Director of Berkeley's Center for Independent Living, begun under the leadership of Ed Roberts. She worked to advocate the philosophy of independent living around the country and the world. Her international interest culminated in the 1983 co-founding of World Institute on Disability. Since 1993, Heumann has served the Clinton administration as Assistant Secretary of Education for the Office of Special Education and Rehabilitative Services, where she oversees a budget of roughly $7 billion. Ms. Magazine was certainly correct in identifying her as one of the "women to watch" for the 1980s.

 

ED ROBERTS

Ed Roberts has come to symbolize the Independent Living movement and its impact on American society. Roberts was behind the opening of the Center for Independent Living in Berkeley in 1972, for which he was Executive Director until late 1975. CIL, in turn, became a model program for fledgling centers around the country and profoundly shaped the development of independent living.

The beginnings of Roberts's career in disability advocacy may be traced to his entrance into the University of California at Berkeley in 1962, at the age of 25. Roberts was paralyzed from the neck down because of polio, which also required resting in an "iron lung" for many hours each day. Although many people with extensive mobility restrictions now attend colleges, it was a revolutionary concept in the early 1960s. Unaccustomed to accommodating students like Roberts, the university housed him in the third floor of Cowell Hospital, where he was aided by friends and attendants with eating and dressing. Despite being segregated from the rest of students, Roberts excelled in his studies, and obtained a master's degree in political science.

Roberts's success opened the doors for other people with similar impairments. By 1967, 12 students who called themselves the "Rolling Quads" had joined Roberts. One outcome of their brainstorming sessions about how to improve their self-sufficiency was the creation of the federally-funded Physically Disabled Students' Program, a program to enable disabled students to maximize their independence through counseling, personal attendant referrals, and wheelchair repair. CIL emerged from Physically Disabled Students' Program as an attempt to carry the university program's mission into the community.

After leading CIL from 1972 to 1975, Roberts became the Commissioner of California's Department of Rehabilitation, appointed by Governor Jerry Brown. Roberts was now the chief of an agency which many years before had denied him rehabilitation services, because they considered him "unemployable." He used the authority of his position to advocate independent living throughout the state of California. This in turn attracted the attention of Congress, which held hearings about independent living in Berkeley and then passed legislation in 1978 to develop independent living centers around the country.

After Brown left office, Roberts joined Judy Heumann and Joan Leon to found the World Institute on Disability in 1983. A year later he received a John D. and Catherine T. MacArthur ("Genius") Fellowship in recognition of his human rights work. Later in the 1980s Roberts helped found Disabled Peoples' International, an organization dedicated to uniting disability organizations from around the world. He traveled extensively throughout Europe and Asia to promote international disability awareness. Roberts died in 1995.

EVAN KEMP

Evan Kemp was a key link for the disability community to George Bush and his administration during the 1980s and the ADA deliberations. During the 1970s, as a Washington attorney, Kemp struck a close friendship with (and found a long-time bridge partner in) C. Boyden Gray, Bush's Chief Counsel. Kemp's friendship was indispensable to Gray for understanding disability when the Reagan administration considered weakening disability-related regulations in the early 1980s. Through this process Kemp also developed a friendship with Bush, who began asking Kemp to write his speeches for disability-related events. Bush secured Kemp an appointment as a commissioner for the Equal Employment Opportunity Commission during the Reagan administration. In 1990, Bush named him Chairman of the EEOC. President Bush's impassioned support of the ADA was crucial for the ADA's eventual success. Kemp was on the podium for the signing of the ADA in 1990.

Evan Kemp was born in New York City in 1937. At the age of 12 he began having symptoms of muscle weakness, and eventually learned that he had Kugelberg Weylander Syndrome, a rare form of muscular dystrophy. After graduating from University of Virginia Law School with honors, Kemp received rejections from 39 different law firms. He finally obtained a job with the Internal Revenue Service, and subsequently the Securities Exchange Commission. Discrimination persisted. After being denied promotion to a supervisory position because he used a wheelchair, Kemp successfully sued the SEC.

Kemp left the government in 1980 to lead the Ralph Nader-sponsored Disability Rights Center. In addition to battling the Reagan administration's deregulatory efforts, Kemp wrote a series of articles and appeared on television and radio to protest the Jerry Lewis Telethons, which maintained debilitating stereotypes of people with disabilities as child-like, pitiable, unemployable, creatures. He also developed close ties to grassroots disability organizations such as ADAPT and joined a variety of disability rights campaigns.

After leaving EEOC in 1993, Kemp founded Evan Kemp and Associates, a business dedicated to providing products and services that enhanced the lives of people with disabilities. Kemp died in 1997 of conditions unrelated to his disability. He is honored, among other ways, through an annual presentation of the Evan Kemp Entrepeneurship Award by the President's Committee on Employment of People with Disabilities.

 

PAT WRIGHT

Pat Wright's leadership during the ADA's passage eventually earned her the nickname "The General." She was one of a handful of leading strategizers based in Washington, DC, and worked especially closely with Ralph Neas, Executive Director of the Leadership Conference on Civil Rights. Wright and Neas collaborated with a number of other leaders who focused on different objectives for passing the Americans with Disabilities Act: Washington lobbyists Liz Savage and Paul Marchand; Grassroots organizers Justin Dart and Marilyn Golden; and attorneys Arlene Mayerson, Chai Feldblum, and Robert Burgdorf.

Wright originally planned to be a medical doctor. During medical school in the 1960s, however, she developed a progressive eye disease that eventually left her legally blind. Being prevented from realizing her aspirations was devastating, and Wright was temporary aimless. But she found a new interest in assisting persons with disabilities move from institutions to community-based living. This also gave her an intimate knowledge of how legal technicalities affected the lives of persons with disabilities. Wright made her first major inroads to the disability rights movement at the Section 504 sit-in in San Francisco in April, 1977. Although she was there largely to serve as a personal assistant to Judy Heumann, Wright began to reveal and develop her negotiation skills in dealing with authorities. This experience led her to become more involved with advocacy. In the late 1970s she joined DREDF, the Disability Rights Education and Defense Fund, where she worked with Robert Funk, Mary Lou Breslin, and Arlene Mayerson to advocate for disability rights on a national level.

In addition to sponsoring training sessions in disability rights, Wright and DREDF formed a crucial working relationship with Ralph Neas and the Leadership Conference on Civil Rights by collaborating on such legislative initiatives as the Civil Rights Restoration Act. Such efforts earned Wright a place on LCCR's Executive Council. Wright was so widely respected in Congress and the White House that her highly individual apparel and colorful vocabulary were safe from reproach. The ADA's success was due in no small part to Wright's strategic leadership.

 

PAUL LONGMORE

Paul Longmore is one of the leading scholars of disability studies and one of only a small but growing cadre of historians studying disability. He is currently Associate Professor of History at San Francisco State University, where he also serves as Director of the newly-established Institute on Disability. Although Dr. Longmore is widely known in the disability community for his extensive publication and speaking on disability, his original specialty is in early American history. His book, The Invention of George Washington (University of California Press, 1988) studies Washington as a political actor and the conscious way in which he shaped his public image. In addition to early American history and disability history, Dr. Longmore has taught courses in U.S. intellectual and cultural history and political theory.

San Francisco State University's Institute on Disability is funded by the U.S. Department of Education. It has a multi-disciplinary objective. It aims to develop a more comprehensive disability studies curriculum, launch community service projects, and support disability-related research projects, including assistive technology, that will have local, national, and international impact. Dr. Longmore brings considerable experience to his role as Director. From 1983 to 1986, he served as the administrator of the Program in Disability and Society at the University of Southern California, a pioneering disability-studies project.

Like many people with disabilities, Longmore originally distanced himself from issues of disability and disabled individuals. His interest in disability as an academic subject did not come until he neared completion of his Ph.D. in history from the Claremont Graduate School in 1984. Since then, however, Dr. Longmore has published widely on the history of the disability rights movement and the representation of people with disabilities in the media. He is also a leading voice in advocating an academically-respected field of disability studies. Dr. Longmore's expertise has been called upon by ABC's Nightline, ABC's World News Tonight, NBC's Today Show, and National Public Radio's Weekend Edition, as well as in the Los Angeles Times, the New York Times, the Washington Post, McCall's, and TV Guide. He is the recipient of numerous awards, including an Andrew W. Mellon Post-Doctoral Fellowship in the Humanities, an H.B. Earhart Foundation Research Fellowship, and the Claremont Graduate School Alumni Award.

FRANK BOWE

Dr. Frank Bowe has led a diverse career as disability activist and leader, government administrator, businessman, and scholar. He is currently Professor in the Counseling, Research, Special Education and Rehabilitation Department at Hofstra University. Since 1995 he has also been the Special Education Coordinator at Hofstra. Before joining the faculty at Hofstra in 1989, Dr. Bowe served as a Regional Commissioner of the U.S. Department of Education's Rehabilitation Services Administration, a position to which he was appointed by Justin Dart. From 1984 to 1986 he was the Chairman of the U.S. Congress Commission on Education of the Deaf.

In the disability community, Dr. Bowe is perhaps best known for his leadership as Executive Director of the American Coalition of Citizens with Disabilities from 1976 to 1981. He was the organization's first executive officer (Eunice Fiorito was the first President), and provided crucial direction during the nation-wide sit-ins regarding Section 504 of the Rehabilitation Act in 1977. Subsequently, Dr. Bowe helped ACCD achieve gains in housing, transportation, and special education.

An expert grant writer, Bowe's writing has also fostered the growth of the disability rights movement, including : Coalition Building: A Report on a Feasibility Study to Develop a National Model for Cross-Disability Communication and Cooperation (1978) and Planning Effective Advocacy Programs (1979). Rehabilitating America: Toward Independence for Disabled and Elderly People (1980) was a pioneering analysis of disability in America. All told, Dr. Bowe has written 30 books, including studies of personal computer design, social policy on age and disability, demographics, and public interest advocacy.

For over two decades Bowe has been a consultant to the U.S. Congress on a variety of issues. In 1992, he received the Distinguished Service Award from the President for his lifetime achievement. In 1994, he was inducted into the National Hall of Fame for People with Disabilities. Hofstra University presented him with the Distinguished Teaching Award in 1996. Dr. Bowe is named in Who's Who in the World, Who's Who in America, Who's Who in American Education, Who's Who in Computing, and Who's Who in Public Relations.

# # #

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Center for Independent Living
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Center for Independent Living
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