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Independent Living Movement: a Cross-Disability Perspective

Editor's Note: Christine Malone is IL Impact Project Manager, Canadian Association of Independent Living Centers (CAILC).

The Canadian Independent Living Movement and the Canadian Association of Independent Living Centers were founded on five principles: consumer control; cross-disability; striving to create situations where full participation and integration of all people with disabilities is possible; community-based; and not-for-profit. As CAILC now approaches its 20th anniversary, they are examining the implementation of these principles, specifically the fundamental value of being cross-disability: Is the Canadian Independent Living Movement meeting the needs of consumers with vision disabilities?

Through examination of the history of Independent Living (IL), the involvement of persons who are blind or partially sighted in the IL Movement, and some of the steps taken to ensure responsiveness to the needs of consumers, it is clear that the Movement and CAILC are able to address a variety of concerns for persons who live with a vision disability.

History of Independent Living in Canada: The philosophy of IL has its roots in Berkeley, California, where a group of students with disabilities wanted to live independently, rather than in an institutional setting. It is an idea that took hold across California, and by the late 1970s had spread across the United States. Around the same time, Canadians with disabilities began to learn about Independent Living and the IL Movement. In 1980, the IL philosophy was introduced by Gerben DeJong at a Coalition of Provincial Organizations of the Handicapped (now known as the Council of Canadians with Disabilities) Conference.

In 1981, three events were central to the development of the IL Movement in Canada: (1) the United Nations declaration of the International Year of Disabled Persons; (2) the release of the Canadian government's Obstacles Report; and (3) the personal commitment of Allan Simpson, Henry Enns and other disability leaders to the IL philosophy. Each of these autonomous developments provided legitimacy to disability issues at the national level and, equally important, ensured the promotion of the IL Movement to a cross-section of government officials, organizations, academics and concerned individuals.

By 1985, through the assistance of a number of organizations such as the Mennonite Central Committee, five Independent Living Resource Centers (ILRCs) were operating (or in the development stages) in cities across Canada: Waterloo, Winnipeg, Thunder Bay, Calgary and Toronto. In May of 1986, at the first IL conference in Ottawa, CAILC was formed to act as a national coordinating body for the IL Movement, and a formal definition of a Canadian ILRC was developed. This Canadian definition was important because, while IL emerged in the United States, the Canadian movement was distinct. This new definition formalized the differences between the Canadian and U.S. movements.

In the United States, the IL model promotes collective advocacy, as well as a greater emphasis on an alternate method for the delivery of services. By contrast, through CAILC, the Canadian movement has focused on individual skills development and disability-led initiatives. In Canada, IL has been about empowering the individual to take risks, make decisions, and to assume control over their own lives. There are now 28 ILRCs located in communities across Canada--in both rural and urban areas and in English and French Canada.

Involvement in the IL Movement: As a cross-disability organization, CAILC understands the need for representation of many different types of disabilities, and values the various perspectives brought forward. In fact, this has been described as being the heart of the movement. Even though there are many differences among specific disability groups, the IL Movement can provide a vehicle for all to come together and support each other.

The involvement of members from the blind or partially sighted community has been seen throughout the history of the IL network. Many individuals have provided leadership to the movement in Canada on CAILC's national and local boards, as staff, volunteers and as centre members. Within the CAILC office itself, having staff members that are closely tied to the blind or partially sighted population, both within and outside the IL network, heightens awareness of various issues. According to Mike Murphy, Executive Director of the Kingston ILRC, "People who are blind or visually impaired are in the IL Movement because they see value in the movement. Engagement in IL is a vehicle for accessibility."

The involvement of these individuals gives the necessary consumer direction and adds to the leadership within the movement on local and national levels. In addition, CAILC continues to evaluate their programs and ability to meet the needs of all people with disabilities. Is the IL Movement responsive enough to the needs of the consumer who is blind or partially sighted at a grassroots level?

The key to evaluating centre effectiveness is knowing that ILRCs cannot work in isolation. The ideas of consumer control and the need for partnership and collaboration have long been recognized as being essential for individuals to actualize the IL philosophy. According to John Lord, well-known writer and researcher on disability issues, "If the core programs at an Independent Living Centre are working, they build bridges for people with disabilities to become full participants and full citizens in their communities."

If the role of an IL centre is to support an individual to have control and decision-making power, then it often involves a great deal of networking within the community to assist in that process. Frequently this process includes connecting an individual with disability-specific supports and services. More involved than just a referral, this is a building or continuation of a relationship between organizations.

To avoid duplication of services, a team approach should be taken, allowing for sharing and education among the groups. This allows the individual to have information to make informed choices. This cooperation is vital, as centres often work with individuals with multiple disabilities. For example, a person identifying as having a physical disability because of Multiple Sclerosis may need connection to services with the occurrence of vision loss over time. It may be the ILRC that can offer the facilitation role in providing a continuum of support.

At a national level, the importance of working with those with the expertise and experience is recognized. This is evident as we move into new areas of technology. We learn not only from within the network, but also draw on the resources of our community partners, such as the Alliance for Equality of Blind Canadians and others, by having them participate in various advisory committees and panel discussions. Such input allows for new insights and increased awareness, as well as ensuring greater community involvement.

As a national organization, CAILC and its member ILRCs have worked on making our services totally accessible. For a number of years, CAILC documents have been available in alternative formats as seen in CAILC policies and materials presented at the Annual General Meetings, for example. The recent addition of a trained braillist to the CAILC staff will assist in the process, as documents can be adapted in a more timely manner.

As the national voice of the IL Movement, the CAILC office increases its accountability and accessibility by testing and standardizing its internal systems and website, making them more accessible and user-friendly for both consumer and staff. This new accountability is seen on a local level as well.

In 2005-2006, we saw the introduction and implementation of a formal accreditation system for all member ILRCs. An important part of this process is a centre's ability to demonstrate accessibility of services to all consumers, emphasizing the need for a cross-disability perspective. This is also an opportunity to demonstrate community connections in working with people, and taking a solutions-based approach to issues, allowing all to move forward. Through the accreditation process, the national office is able to monitor cross-disability services and ensure access to all. Centers must be able to demonstrate these services to remain accredited.

Conclusion: When reflecting upon the work and impact of the IL Movement over the past two decades, we can see some of the steps forward and lessons learned. The five principles on which the movement was based are still relevant today, perhaps none more so than the principle of being cross-disability. Sandra Carpenter, former CAILC Chairperson, said, "The differences between individuals can only make the movement stronger, as ILRCs and consumer groups can divide and share tasks and support one another."

It is with this idea in mind that the Canadian IL Movement addresses a variety of issues for members who live with vision disabilities. These people have been directly involved in the history and development of the IL Movement in Canada. This involvement, together with accreditation standards and the fundamental principle that the movement must be cross-disability, has ensured that CAILC and the ILRCs themselves continually strive to meet the needs of persons with a vision disability.

Can we do more? Absolutely!

Individuals who are blind or partially sighted are always welcome to identify ways the ILRCs and CAILC can improve their services. The movement relies on the involvement and input of individuals in a variety of roles to ensure that we remain relevant and responsive to the diverse needs of the community.

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