History of Independent Living
by Gina McDonald and Mike Oxford
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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 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
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 c lass. 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 Raider s."
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
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
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
These
lives of these two leaders in the disability rights movement, Ed Roberts and
Wade Blank, provide poignant examples of the modem history, philosophy, and
evolution of independent living in the
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 p art 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 accessi bility 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
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
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,
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 ILRU Program. As director of the National Council on Disab ility, he directed
preparation of the original
Liz
Savage and Pat Wright are considered the "mothers of the
There
are countless other people who have and continue to make substantial
contributions to the independent living movement.
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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.