Colouring Outside the Lines

By Sandra Carpenter

If you walk (or roll) into an Independent Living Centre (ILC), you won’t find social workers, medical people, or barren waiting rooms. You will find warmth, friendship and people who love helping others find creative solutions to their problems.

ILC staff are committed to helping people find the most appropriate solution to each individual need. This does not always involve the most typical or common remedy. It is this that both sets apart and makes an ILC complementary to other programs and services targeted to people with disabilities.

The birth of the Canadian Association of Independent Living Centres (CAILC) in 1985 signaled a new era in the disability movement. Our issues were different from those of the ILC in the U.S. They had no social programs for their disabled citizens. We had many, but they weren’t working right. Their self-advocacy efforts were merged with the creation of new services. We wanted to create alternatives to pre-existing but often inadequate or inappropriate service systems.

CAILC’s mission statement contains the key concepts reflecting the values of the Independent Living movement:

"To promote and enable the progressive process of citizens with disabilities taking responsibility for the development and management of personal and community resources."

"Promote" denotes an ethic of being proactive rather than just reactive. This has sparked some Centres to engage the community through public education or support various committees or task group in a variety of undertakings.

"Enable" implies self-advocacy as a goal. This involves concerted efforts made towards teaching, mentoring or otherwise giving people the tools needed to function with a minimum of dependence on others. Independence is not thought of in a physical sense. It has more to do with feeling independent, being in control of your own life, and having sufficient self-esteem to actively pursue a chosen self-esteem to actively pursue a chosen lifestyle.

"Progressive Process" means that the path to independence occurs in stages leading to the ability to self-advocate.

"Citizens with Disabilities" explains who it is we work for. The essence of citizenship contains rights and responsibilities directly pointing to participation in and contribution to society.

"Taking responsibility" reflects back onto rights of citizenship. Responsibility should be taken for "development and management of community resources".

"Development and management" is interpreted within a framework of having individuals involved on all levels and in all aspects of service or resource needs.

This involvement should be controlled by the individual. In some cases it may be enough to appoint someone else to worry about certain aspects of development and management, but that does not detract from the value base that says there should be room for an individual’s input and direction within all aspects of service development and management.

"Personal and community resources" refers to the full range of support individuals with disabilities need to participate and contribute to the greatest extent possible. Personal resources refer to the inner strengths which are continually supported and enhanced. Community resources refers to external resources such as wheelchair accessible transportation, housing, or access to employment, which are the necessary ingredients for living in a community.

Canada had a well-developed, self-advocacy track record. Most organized and vocal are the Coalition of Provincial Organizations of the Handicapped (COPOH) affiliates. COPOH focused on collective solutions, but recognized there was a gap in support to individuals from the disability rights movement. This led to the creation and mobilization of Independent Living Centres.

There is a great deal of misunderstanding of the term "independent living" and the definition and function of an ILC.

In the medical rehabilitation field, independent living became the goal of life skills development programs. One rehabilitation hospital has an "independent living centre," which is, in fact, a demonstration and information centre for technical or assistive devices. Another rehabilitation centre runs a program aimed at teaching blind people how to function on their own.

These programs should more aptly be called "independent living programs," because an independent living centre is controlled by people with disabilities; does not focus on few or specific disabilities; is based in the community; and promotes integration and full participation.

Those organizations offering programs that do not adhere to these four principles are not members of CAILC, although CAILC and the network of member centres may form working relationships with them in order to meet common goals.

CAILC promotes adherence to these four principles in order to ensure that an Independent Living Centre will be a place where people make their own choices.

ILC’s with membership in CAILC are committed to offering programs in four core areas: providing information on available services, developing and delivering "peer" support,
"coaching" and advising people on strategies to get what they need, and developing programs.

Students of human behaviour recognize that the primary ingredient in having any kind of personal power is having access to information and referral programs as a point of entry for all other programs.

A second primary ingredient towards a better concept of yourself is knowing you are not alone. In ILC’s, peer counselling, advising, or support often goes beyond simply matching up one person with a disability with another. A peer could be anyone sharing similar interests, values or activities as your own.

Individual advocacy distinguishes ILC’s as "consumer run" groups from consumer advocacy groups. It includes activities such as teaching life skills, organizing and training volunteer peer advocates, and calling or writing people regarding specific issues. It means working TOGETHER with others, but never taking personal responsibility FROM them.

Service development and delivery includes research and planning, setting up demonstration programs, evaluation of service delivery, coordination and development of consumer monitoring mechanisms. It is the combination of all these ingredients that assures that the member centres of Canada’s Independent Living Movement will continue to provide innovation and service at the local level.

Each ILC provides a place where people can get answers, find support or contribute to finding solutions to difficulties they have encountered because of a disability.

Who can go to an Independent Living Centre? Because centres sometimes spend a lot of energy working on problems faced by people with more severe physical disabilities, and because people who use wheelchairs, by virtue of the fact that they ARE in wheelchairs and are more visible in the membership of a Centre, there is a tendency to think that Centres are places only for people in wheelchairs. This is not true. Centres do not exclude any one type of disability, but try not to unnecessarily duplicate other initiatives, programs, services or activities already occurring in the community.

For example, if a Deaf person, new to the area, calls looking for help, the first response might be to hook that person up with pre-existing groups, but if the person’s problem is outside the scope of such groups, or if there is a waiting list, or if for any other reason the person cannot access the necessary support and resources, then the Independent Living Centre finds its most useful role to play.

If a woman with a disability is looking for a shelter, the Centre would refer her to one, if one was available, or tell her about DAWN (Disabled Women’s Network) chapters, or other women’s resources. As Centres get calls like this, they sit down with other resource groups to ensure the most expedient course of action.

Often people newly or even just temporarily disabled benefit from contact with Independent Living Centres. A woman in her late 50s with failing vision and hearing was not getting adequate answers from her doctor and was sent to a psychiatrist to help her overcome depression. A family member called a friend in a centre 400 miles away and was given ideas about who to contact locally.

She now gets support from the local representatives of the CNIB, the Canadian Hearing Society and a homemaker once a week. She has met others with similar disabilities, and her sense of self-esteem has so improved, she is able to get specialized transportation in an area where none had previously been available.

The CAILC definition of ILC’s opens up a new horizon for how we think of ourselves, disabled or otherwise. This phenomenon is having a ripple effect wherever it emerges. It is a return to generalism in a time of increasing specialization, to individualism in the midst of conventionalism, to creative thought in an ever-widening ocean of bureaucracy, a place that can show everyone the value of colouring outside the lines.