History of Independent Living
by Gina McDonald and Mike Oxford
Used in the IL NET Training Manual titled Standards and More: Beyond Compliance (1995) --http://www.ilru.org/html/projects/ilnet/ilnet_manuals.htm
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.
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 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 "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.
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.
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
Department 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
as an individual who was "too" disabled, he became head
of the California Department of Rehabilitation--the agency that
had once written him off.
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
today. This new program rejected the medical model and focused on
consumerism, peer support, advocacy for change, and independent
living skills training.
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 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.
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.
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.
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.
1968--Architectural Barriers Act: prohibits architectural
barriers in all federally owned or leased buildings.
1975--Developmental Disabilities Bill of Rights
Act: among other things, establishes Protection and Advocacy services
(P & A).
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 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.
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.
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.
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.
Last Modified: 03-23-05