History of the Independent Living Movement

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 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 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 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 1950s 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, 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, 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 based on 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, an 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 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 are. 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. (Note: Max passed away January, 2011)

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 ILRU Program. As director of the National Council on Disability, he directed preparation of the original ADA legislation and its introduction in Congress. (Note: Justin passed away June 22, 2002)

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.

Pioneers

Ed Roberts

-Photo: Lydia Gans

Ed Roberts

The Father of Independent Living

In 1953, Roberts was paralyzed from the neck down after contracting polio at the age of 14. He was instrumental in the success of the first Center for Independent Living (CIL) in Berkeley, CA, in the early 1970’s, which became a model for CIL’s across the country.  The California Department of Vocational Rehabilitation (CDVR) and the University of California at Berkeley considered his disability too severe when he applied for college. After a fight, he was allowed in, but the dorms were not accessible and they made him reside in the health center with his 800 pound iron lung.While at Berkeley, he formed “The Rolling Quads,” the first group to advocate for better accessibility and support services on campus and the Disabled Students Program.  He earned Bachelor and Master Degrees in Political Science. In 1976, Roberts was appointed Director of CDVR. He left in 1983 and co-founded the World Institute on Disability. Roberts passed away in 1995. Each January 23 is “Ed Roberts’ Day.”

www.wid.org

Justin Dart Jr

Photo: Tom Olin

Justin Dart, Jr.

Father of the Americans with Disabilities Act (ADA), 1990 

Dart was an international human rights activist and a leader of the disability rights movement. In 1948 he contracted polio just before entering the University of Houston where he earned Bachelor Degrees in History and Education in 1954. There he organized his first human rights group for integration. Despite his desire to teach, the University withheld his teaching certification because of his disability. In 1975, after nearly two decades of advocating around the world he and his wife Yoshiko decided to dedicate their lives to human and disability rights. From 1980 to 1985, Dart was involved with the Texas Governor’s Committee for Persons with Disabilities.  This work led him to organize a grassroots effort to keep fighting for a victory.Dart was the recipient of five presidential appointments and numerous honors. He was at the podium on the White House lawn when President George H. Bush signed the ADA into law July 26, 1990. Also in 1990, he helped pass the Individuals with Education Disabilities Act (IDEA). Dart passed away in 2002.

www.ada.gov

Wade Blank

Photo: Tom Olin

Wade Blank

A Founding Father of ADAPT

In 1971, Blank began his work in the Heritage House nursing home in Denver, Colorado developing a new hip youth wing. He added a work program and social activities that were unheard of in an institution. Eventually, he suggested moving them on their own and was fired. In 1983, Blank created the Atlantis Community to liberate people with disabilities from nursing homes and the organization American Disabled for Accessible Public Transit (ADAPT) which took on discrimination such as in the nation’s bus systems. ADAPT used non-violent, direct-action tactics with bold demands which achieved extraordinary results. Blank found leadership qualities in people who had never been thought of as leaders: former nursing home residents, people with speech impediments and people considered not equal in society. In 1991, ADAPT became American Disabled for Attendant Programs Today and changed their focus to community supports for people with disabilities. Blank died in 1993.

www.adapt.org

Max Starkloff

Photo: Colleen Starkloff

Max J. Starkloff

National Council for Independent Living (NCIL) Co-Founder 

Starkloff, a Missouri native, was instrumental in the Independent Living Movement. In 1959, at the age of 21, he was involved in an automobile accident that broke his neck. The physical and financial strain associated with his care became overwhelming and the only option for his family was to move him into a nursing home. For 12 years, he fought for control of his own care and independence as he envisioned a more fulfilling life with a family of his own. As a result, in 1970 he co-founded Paraquad, the first CIL in Missouri, to help people with disabilities remain at home, find jobs and live independently. In 1982, Starkloff co-founded and became the first President of NCIL. In 2003, he formed the Starkloff Disability Institute in St. Louis. He served people with disabilities by inspiring and developing a strong and expansive network of grassroots advocates for change. Starkloff passed away in 2010.

www.starkloff.org, www.ncil.org

Linda Gonzales

Photo: Tom Olin

Linda Gonzales

Association of Programs for Rural Independent Living (APRIL)

Gonzales began her 30 year career as a peer counselor working at a Center for Independent Living (CIL) in California.  She moved to New Mexico and became a director at the Santa Fe CIL.  As a person with muscular dystrophy and experience with rural areas, she discovered the need for programs and services continued to grow. In 1986, Gonzales was a founding board member and later the Executive Director of APRIL; an organization that recognizes and addresses the challenges people with disabilities have living in rural communities. She became nationally known for bringing the disability perspective into rural policy development and leading APRIL in peer mentoring programs, involving youth with disabilities and bringing transportation options to rural communities. She won the President’s Award of the National Council On Independent Living, and was invited to the White House to meet with President Bill Clinton.  She passed away in 2013.

www.april-rural.org

Jim Tuscher

Photo: Paraquad

Jim Tuscher

Missouri Legislative Advocate

Tuscher had a passion for disability rights and a desire to create change. He was a veteran, teacher and role model. He was a strong advocate and peer mentor for people with disabilities after becoming paralyzed due to a spinal tumor during his mid-20’s. In 1979, he joined Paraquad and dedicated his work to establishing the right of people with disabilities to have productive and meaningful lives as well as personal freedom with access to appropriate health care. Tuscher was instrumental in securing funding for Centers for Independent Living in Missouri and the passage of the Americans with Disabilities Act (ADA) in 1990. He helped create legislation for public schooling, crime prevention, health care, assistive technology and welfare reform to ensure people with disabilities have access to independence as stated in the Olmstead v. L.C. Decision of 1999. He lobbied for consumer-controlled personal care programs and helped create absentee voting laws. He passed away in 2011.

www.paraquad.org

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