Independent Living

• Orientation
• Workshops
• Etiquette
• Acronyms
• Workability Video
• News/Events
• Legislative Advocacy

Workshops

• European Cultural Heritage
• Attitudes and Behaviors Inherited
• The Start of the Independent Living Movement
• Federal Laws Supporting the Independent Living Paradigm
• TitleVII of the Rehabilitation Act - 1986 and 1992 Amendments

The Start of the Independent Living Movement

by Maggie Shreve

1. Beginning of the Independent Living Movement: Much of the movement results from reactions to the attitudes and behaviors mentioned in the previous workshop, i.e. our history. Independent Living represents rebellion against the traditional system.
2. First Center for Independent Living (CIL) is established in Berkeley, CA. This is the model that most generic CILs follow today.
3. 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.
4. 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.
5. 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.

1. The "Medical Model" assumption
   1. Physician is technically competent expert
   2. Medical care should be administered through a chain of authority wherein the physician is the principal decision-maker
   3. The "patient" is expected to assume the "sick" role
   4. The main purpose of medicine is the provision of acute/restorative care
   5. Illness is muted primarily through the use of clinical procedures such as surgery, drug therapy and the "laying on of hands."
   6. Illness can only be diagnosed, certified, and treated by trained practitioners
2. 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:
   1. A sick person is exempted from "normal" social activities and responsibilities depending on the nature and severity of the illness
   2. 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
   3. 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
   4. 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.
3. 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?
4. 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.
   1. 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.
   2. 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.
   3. 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.
   4. 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.
   5. 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

Information provided by: Maggie Shreve, Consultant, 1523 W. Edgewater, Chicago, IL 60660, Voice/TTY: (312) 989-4385, Fax: (312) 989-8268