A HISTORY OF INDEPENDENT LIVING

Your Key to Accessibility

Serving people with disabilities of all ages and their significant others.

This account of the history of independent living stems from a philosophy that 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, '60s [and early '70s] among African Americans. The basic issues were the disgraceful treatment based on bigotry and erroneous stereotypes in housing, education, transportation and employment. The strategies and tactics are very similar. This history and its driving philosophy also have very 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. 

     The first social movement was deinstitutionalization, 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 upon 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 be 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 [of African-Americans]. Although people with disabilities were not included as a protected class under the Civil Rights Act of 1964, 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 more immediate challenge of even getting on the bus.

The self-help movement, which really began in the 1950s with founding of Alcoholics Anonymous (AA), 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 the independent living philosophy. According to this tenet, people with similar disabilities are believed to be more likely to assist and understand each other than individuals who do not share an experience with a 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 the independent living philosophy became a 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 the most  fundamental to the 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, proposed a shift from the medical model to the independent living model (DeJong, 1979). As with the movements described above, this theory located problems or deficiencies in society, rather than in 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, rather than 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.

Ed Roberts is considered to be the father of independent living. Ed became disabled at the age of fourteen as a result of polio. After a period of denial in which he almost starved himself to death. Ed returned to school and received his high school diploma. He then wanted to go to college. The California Dept. of Rehabilitation initially rejected Ed's application for financial assistance because it was decided that he was too disabled to work. He went public with his fight, and within one week of doing so, was approved for financial aid by the state. Fifteen years after Ed's initial rejection by the State of California Dept. of Rehabilitation as an individual, who was too disabled, he became head of the California Dept. of Rehabilitation - the agency that had once written him off.

    After Ed earned his associate's degree at the College of San Mateo, he applied for admission to University of California at Berkeley. After initial resistance on the part of the university, Ed was accepted. The university let him use the campus hospital as his dormitory because there was no accessible student housing. (None of the residential buildings could support the weight of Ed's 800 lb Iron long). He received attendant services through a state program called Aid to the Totally Disabled. This is a very important note because this was a consumer-controlled personal assistance service. The attendants were hired, trained, and fired by Ed. In 1970, Ed and other students with disabilities founded a disabled students' program on the Berkeley campus. His group was called the Rolling Quads. Upon graduation, the Quads set their sights on the need for access beyond the university's walls. Ed contacted Judy Heumann, another disability activist, in New York. He encouraged her to come to California and along with other advocates; they started the first center for independent living in Berkeley. Although it started out as a modest apartment, it became the model for every such center in the country. This new program rejected the medical model and focused on consumerism, peer support, advocacy for change, and independent living skills training. In 1983, Ed, Judy, and Joan Leon, co-founded the World Institute on Disability (WID), an advocacy and research center promoting the rights of people with disabilities around the world. Ed Roberts died unexpectedly on Mach 14, 1995. The early 1970s was a time of awakening for the disability rights movement in a related, but different way.

    As Ed Roberts and others were fighting for the rights of people with disabilities presumed to be forever homebound and were working to assure that participation in society in school, in work, and at play was a realistic, proper, and achievable goal. Others were coming to see how destructive and wrong the systematic institutionalization of people with disabilities could be.

    Inhuman and degrading treatment of people in state hospitals, schools, and other residential institutions such as nursing facilities were coming to light, and the financial and social costs were beginning to be considered unacceptable. This awakening within the independent living movement was exemplified by another leading disability rights activist, Wade Blank.    

Wade Blank began his life-long struggle in civil rights activism with the march 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 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. The 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 a 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'd 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. American Disabled for Accessible Public Transit (ADAPT) eventually mushroomed into the nation's first grassroots disability rights and 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, unitil ADAPT changed their minds and the minds of the nation. In 1990, after the passage of the Americans with Disabilities Act (ADA), ADAPT shifted its vision toward a national system of community based personal assistance programs. The acronym ADAPT became Americans Disabled for Attendant Programs Today. The fight for a national policy of attendant services 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 Blank and Ed Roberts live on in many hearts and in the continuing struggle for the rights of  people of 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 for people with disabilities, The Rehabilitation Act of 1973. 

Before turning to the Rehabilitation Act of 1973, a chronological listing and brief description of important federal civil rights laws affecting people with disabilities is in order.

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

In 1972, Congress passed a rehabilitation bill that independent living activists cheered. President Richard Nixon's veto prevented the 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 rights, 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 finally became law. Passage of this pivotal law was the beginning of the on-going 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 Title V Sec 504, 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 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 a 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 fairly simple one: As Dr. Martin Luther King said, "It is a historical fact that the privileged groups seldom give up privileges voluntarily. Individuals may see a 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. "

Max Starkloff, Charlie Carr, and Marcia Bristow founded the National Council on Independent Living (NCIL) in 1983. NCIL is one of the only national organizations that is consumer-controlled and advocates for 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 (ADA) of 1990 and is seen by many as the spiritual leader of the movement today.

Lex Frieden is the co-founder of the ILRU Program. As director of the National Council on Disability, he directed preparation of the original ADA legislation and its introduction to 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.

SUGGESTED TEXTS FOR FURTHER READING 

Shapiro, Joseph P. No Pity: People with Disabilities Forging a New Civil Rights Movement. New York, NY : Three Rivers Press Member of the Crown Publishing Group Division of Random House, 1993-1994.  Originally Published by Time Books in 1993.

Matson, Floyd W. Walking Alone Marching Together: A History of the Organized Blind Movement in the United States,1940-1990. National Federation for the Blind 1990.

Charlton, James I. Nothing About Us Without Us: Disability Oppression and Empowerment. University of California Press, Berkeley and Los Angeles 1988.

Shaw, Barrett, Editor. THE RAGGED EDGE: The Disability Experience From the Pages of the First Fifteen Years of the Disability Rag  The Advocado Press, 1994.

Davis, Lennard J. Disability Studies Reader. New York, NY: Routledge Press,1997.

Taken from © History of Independent Living by Gina McDonald and Mike Oxford , History of Independent Living, You Can Work Participant Manual.

©You Can Work Participant Manual is a work of the BHCIL.