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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.
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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.
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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.
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1975 Developmental Disabilities
Bill of Rights Act: among other things, establishes Protection and
Advocacy (P & A).
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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.
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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.
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.
OUR
MOTTO
CHOICE, CONTROL, CHANGE
The independent living motto, "Choice, Control,
Change" sums up our philosophy
very well: "Control over one’s life by making choices
that in turn bring about
change." NorthEast Independent Living Services activities are
based on these
three guiding principles:
CHOICE
Many persons with disabilities may not be aware
of options that might allow them to live more
independently. NEILS educates consumers about
available opportunities. The consumer can then
choose to use what they have learned to set the
goals. Through community advocacy, NEILS
works to expand the available range of choices.
CONTROL
Once consumers have chosen the goals they wish
to pursue, NEILS assists them in accomplishing
their goals. In this way, the consumer is in control,
deciding what needs to be done and how to
achieve it. NEILS policies are strongly influenced
by consumers needs and interests. Advocacy
activities are consumer controlled as well.
CHANGE
By learning to make sound, independent choices,
and taking control of the decisions made regarding
their lives, consumers, with NEILS support and
assistance, move away from unnecessary
dependency. NEILS itself, through community
education and advocacy, works to encourage
removal of institutional barriers to full inclusion of
persons with disabilities in communities.
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