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- Beginning of the Independent
Living Movement: Much of the movement results from reactions
to the above attitudes and behaviors, i.e. our history.
Independent Living represents rebellion against the traditional
system.
- First Center for Independent
Living (CIL) is established in Berkeley, CA. This is the
model that most generic CILs follow today.
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CILs in California, Massachusetts, Michigan, and Texas centers
started around the same time. Independent Living is a reaction to the traditional
service delivery system and particularly the "medical model" because of
funding patterns.
-
Rehabilitation originated in the medical model and flows from "medical"
practice. This is one reason why a medical evaluation or diagnostic
is necessary for service delivery.
- Independent Living originated in reactions
to the dehumanizing process inherent in the medical model and
the need for civil rights, equal access and equal opportunity.
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- The "Medical
Model" assumption
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Physician is technically competent expert
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Medical care should be administered through a chain of authority wherein
the physician is the principal decision-maker
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The "patient" is expected to assume the "sick" role
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The main purpose of medicine is the provision of acute/restorative care
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Illness is muted primarily through the use of clinical procedures such
as surgery, drug therapy and the "laying on of hands."
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Illness can only be diagnosed, certified, and treated by trained practitioners
- The
Sick Role - People with disabilities are expected to
play this or the "impaired role." The sick role consists
of two interrelated set of exemptions and obligations:
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A sick person is exempted from "normal" social activities and responsibilities
depending on the nature and severity of the illness
- A sick person is exempted from any responsibility for his/her illness.
He/she is not morally accountable for his/her condition and is not expected
to become better by sheer will
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A sick person is obligated to define the state of being sick as aberrant
and undesirable, and to do everything possible to facilitate his/her recovery
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A sick person is obligated to seek technically competent help and to cooperate
with the physician in getting well
Because disability is often an irrevocable part of a person's existence,
the person with the disability begins to accept not only the condition
but also the belief that his/her very own personhood is aberrant and undesirable.
Moreover, he/she begins to accept the dependency prescribed under the sick
role as normative for the duration of the disability.
- The
Impaired Role - The impaired role is ascribed to an individual
whose condition isn't likely to improve and who is unable to meet the
first requirement of the sick role, i.e. the duty to get well as soon
as possible. Occupants of the impaired role have abandoned the
idea of recovery altogether and have come to accept their condition
and dependency as permanent. The impaired role is not a normative
one or one prescribed by the medical model, but it is a role a disabled
person is allowed to slip into as the passage of time weakens the assumptions
of the sick role. The dependency creating features of the medical
model and the impaired role are most pronounced in institutional settings
Patients are encouraged to follow instructions, rules and regulations.
Compliance is highly valued, and individualistic behavior is discouraged.
The "good" patient is the individual who respectfully follows instructions
and does not disagree with the staff. On the other hand, the patient
who constantly asks for a dime for the pay phone, a postage stamp, or a
pass to leave the institution on personal business, tends to be treated
as a nuisance or labeled "manipulative." Patients do not make their
own appointments, keep their own medical charts, or take their own medications.
Responsibility for these things is legally vested in the institution.
Yet on the day of discharge, the patient is expected to suddenly assume
control of his own health care and life decision-making.
Corcoran, 1978
Does this quote bring to mind other service provider (besides institutions)
which create the same role for the person with the disability?
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Centers for Independent Living represent the reality of the dehumanizing process inherent in the medical model and
the need for civil rights, equal access and equal opportunity..
They also represent the convergence of five other social movements of the
1960s -- the period of U.S. history which saw great social change as mentioned
above. According to Gerben DeJong in his paper, "The Movement of
Independent Living: Origins, Ideology and Implications for Disability
Research," these five social movements created the necessary atmosphere
for the current activities of both the disability rights movement and the
development of centers for independent living. Centers still emphasize
the primary principles of these other five movements in their service and
advocacy approach. Starting with the Center for Independent Living
(CIL) in Berkeley, California in the late 1960s, disability rights and
independent living concepts merged into one operational organization.
Essentially, individuals with disabilities joined together to protest their
exclusion from society's mainstream and to demand more humane, non-medical
attention from the nation's service delivery system. By 1972, there
were at least five states where CILs similar to Berkeley model had been
established. These new organizations, run by people with disabilities
for people with disabilities, were trying to respond to a rising demand
from the disabled community for control over their own services.
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Much of this demand sounds like the civil rights
movement led by African-Americans during the 1950s and 1960s.
People with disabilities pointed out that, just like other minorities,
they were being denied access to basic services and opportunities such
as employment, housing, transportation, education, and the like.
Like Rosa Parks, people with disabilities want and need to be able to ride
the bus. The only difference is that Rosa Parks, as an African-American
woman, was not permitted to sit in the front of the bus, while people with
disabilities just want to get on the bus.
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Consumerism, a movement led by well-known national figures such
as Ralph Nader, contributed another element to the growing disability rights
and independent living movement. People with disabilities were, for
the first time, stressing their role as consumers first and "patients"
last. In other words, individuals with disabilities wanted the right
to educate themselves and decide for themselves what services and products
they wished to purchase (even if a third party was paying for the services
or product). As "clients" or "patients," people with disabilities
were rarely given any autonomy or power over the services and products
they would use.
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Self-help is nothing new in the United States, but organized self-help
programs are relatively new. The original non-professional, self-help
program which is best known in the U.S. is Alcoholics Anonymous.
Having a severe disability may not be exactly the same as having a problem
with alcohol, but a strong parallel remains. Leaders of the disability
rights and independent living movement believe that only persons with disabilities
know best how to serve others who have the same or similar disabilities.
The concept of "peer" counseling and self-help groups are the most common
methods of self-help.
- De-medicalization and de-institutionalization share certain
common characteristics. De-medicalization for people with disabilities
means removing the involvement of medical professionals from the daily
lives of individuals with disabilities. People with disabilities
are not "sick." They are disabled and not dependent upon medical
professionals for everyday needs. The perfect example of the "de-medicalized"
service for persons with severe mobility disabilities is that of "personal
assistance." Personal assistance is a consumer-directed service whereby
the person with the disability recruits, hires, trains, manages and fires
his/her own personal assistants. When consumers with disabilities
are allowed to buy the services they need for daily survival from whomever
they choose, they have "de-medicalized" the service. Unfortunately,
the vast majority of services provided to people with disabilities are
still rooted in the "medical model," regardless of the individual's needs
and desires.
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De-institutionalization, which began in response to large mental
health facilities for those who are mentally ill or mentally retarded,
follows the principles of de-medicalization. Most institutions are
staffed by medical personnel, even if residents are not ill. Since
may such individuals are only disabled by some permanent condition, placement
in institutions is inappropriate and far more costly than providing those
same residents with the support services they need to live in their chosen
communities. The disability rights and independent living movement
is working towards the development of those other non-medical and community-based
services which would assist institutionalized persons to move back to their
home towns or areas.
The disability rights and independent living movement is a compilation
of all five movements as they pertain to and are defined by people who
have disabilities.
Since most traditional rehabilitation programs are built upon the "medical
model" of service delivery, the disability rights and independent living
movement promotes a completely different approach to service delivery.
Independent living as a movement is quite unique compared to existing programs
and facilities serving people with disabilities. Centers for independent
living across the nation are working towards changing their communities
rather than "fixing" the person with a disability. CILs were originally
defined by the first CIL in Berkeley and now are commonly referred to as
consumer-controlled, community-based, non-residential not-for-profit organizations
providing both individualized services and system advocacy. See the
paradigm chart following.
Independent Living & Traditional Rehabilitation
Paradigms
| |
Rehabilitation Paradigm |
Independent Living Paradigm |
| Definition of the problem |
physical or mental impairment; lack of vocational skill (in the VR
system) |
dependence upon professionals, family members and others |
| Focus of the problem |
in the individual (individual needs to be "fixed" to fit into society |
in the environment; in the medical and/or rehabilitation process itself |
| Solution to the problem |
professional intervention; treatment |
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barrier removal
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advocacy
-
self-help
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peer role models and counseling
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consumer control over options and services
|
| Social role |
individual with a disability is a "patient" or "client" |
individual with a disability is a "consumer" or "user" of services
and products |
| Who controls |
professional |
"consumer" or "citizen" |
| Desired outcomes |
maximum self-care (or "ADL"); gainful employment in the VR system |
independence through control over ACCEPTABLE options
for everyday living in an integrated, community-based environment |
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