History of the Independent Living Movement
by April D'Aubin
Power to the people! A popular slogan - but how do you get from rhetoric to reality? In Canada people with disabilities are giving power to themselves - personal empowerment - through their activities in Independent Living centers (ILCs). Canadian ILCs are self-help, non-profit, community-based organizations established and operated by disabled people to assist themselves and others with disabilities gain and maintain control over their lives. To legitimately carry the ILC name an organization must establish constitutionally that people with disabilities make up at least 51 percent of the center's board of directors.
Personal empowerment, which stands as the main goal of Canada's ILCs, is promoted through IL core programming: information and referral, peer counseling, individual advocacy, service development capacity.
IL programming rests on the belief that access to knowledge and information empowers individuals so that they can exert control over their personal lives. For example, a disabled person who knows how to appeal the decision of her welfare worker is in a far stronger position than one who believes her worker's decision is final. If contacted by a disabled person experiencing a welfare problem, the ILC's Information and Referral program would provide the consumer with information on appeal procedures and the Advocacy Program, if requested, would assist the person make the necessary appeal. Through the peer support program, which specializes in the area of mutual support activity, somebody who has a disability can share her experience with others who have been in a similar situation. This provides disabled people with an opportunity to share their experiences with others in the community who can benefit from them.
Canadian ILCs engage in personal, as opposed to class action, advocacy assisting individuals get around the old bureaucratic run-around. A center's advocacy coordinator works with a disabled person to assist them cut through bureaucratic red tape and reach a desired conclusion identified by the disabled individual. The advocacy coordinator involves the disabled person every step of the way, as the program's goal is for the individual to learn to advocate on their own behalf. Centers seek to enhance disabled peoples' skills as self-advocates.
Class action advocacy, which involves such activities such as pushing government for changes in programs and legislation, remains the preserve of the advocacy organizations of disabled persons, affiliated with COPOH (Coalition of Provincial Organizations of the Handicapped), Canada's DPI member. In Canada these organizations are referred to as consumer groups. These organizations also monitor those who provide services affecting disabled persons. Consumer groups have refrained from becoming involved in service provision, because it is felt that an effective monitoring organization cannot also provide services.
Despite this separation of roles, consumer groups have always maintained a keen interest in Independent Living. In fact, COPOH introduced the Independent Living concept to Canada in 1980 when it invited Gerben DeJong, an influential American Independent Living theorist, to speak at its Defining the Parameters of Rehabilitation Conference. Since that time both COPOH and its member organizations have been enthusiastic promoters of the Independent Living philosophy.
Canadian ILCs have banded together to form the Canadian Association of Independent Living Centers (CAILC). Established in 1986, CAILC's membership currently consists of the nine established ILCs operating in Canada. The Association's primary goal, as stated in its By-Laws, is to promote and coordinate the development of Independent Living centers and services throughout Canada. It has as its objectives: establishing standards, networking and information sharing, promoting IL, developing and clarifying IL definitions, promoting IL research, supporting the self-help movement of disabled persons, supporting staff training, and liaising with ILCs in other countries.
To facilitate the advancement of Independent Living, Canadians with disabilities have adopted a national definition of an Independent Living center. The Canadian definition states, "Independent living centers: promote and enable the progressive process of citizens with disabilities taking responsibility for the development and management of personal and community resources. Centers, while reflecting each community's unique character will be: consumer controlled, cross disability, community based, nonprofit, promoters of integration and full participation. Essential program components are: information and referral, peer support, individual advocacy, service development capacity, e.g. via research and planning, demonstration programs, service delivery and coordination, service networking, consumer monitoring (including such services as: housing assistance, personal assistance, transportation, vacation relief, technical aid loans)." This definition has been adopted by centers, themselves, and by COPOH.
The future looks bright for ILCs in Canada. Recognizing the importance of ILC's new brand of service delivery, the federal Department of Health and Welfare has begun to fund centers' operations. This recognition by the federal government stands as an important milestone for the IL movement in Canada. Centers have been seeking similar recognition at the provincial and community level. Centers have been promoting the idea that ILC essential operational funding (i.e. rent, salaries, equipment, supplies, etc.) should be met according to the following formula: one third community support, one third provincial government support, one third federal government support. Foundations, income generating projects, donations, contracts, etc. are additional sources of revenue.
Many challenges still face ILCs, but centers are prepared to meet these. In the very near future Canadian ILCs will be dealing with the development of evaluation procedures, staff training programs, income generating projects, and the like. To address these concerns, Canadians in the Independent Living Movement are beginning to reach out to those involved in IL in other countries. It is felt that by networking internationally IL will be strengthened both here at home and around the world. Canadian centers look forward to learning through DPI's work different IL approaches that have been tested elsewhere.
Source: COPOH, 926-294 Portage Ave, Winnipeg Man R3C 0B9, Canada.