Research as an Empowerment Process for the IL Movement

Research? Research? Research? What does it mean?

Is research on disability always a good and worthwhile activity, or can it sometimes be a means to encourage and maintain the systemic dependencies of people (with and without disabilities) on traditional solutions or ways of doing things? The answers to some of these questions, of course, depend upon the nature and the assumptions of the research process itself.

Recently, as all of Canada was celebrating the Blue Jays' World Series victory, representatives of the Independent Living (IL) movement form across the country were gathered together in Toronto to take a close look at this issue in order to define the role and place of research in the IL movement.

To do this, the Canadian Association of Independent Living Centres (CAILC) (now IL Canada) organized a joint planning seminar on the topic of research in the Independent Living movement. This meeting brought together CAILC's (now IL Canada) national board as well as its 16 member Independent Living Resource Centres (ILRCs), in order to create a common vision of what role research would play in the movement.

At the heart of the IL movement are the values of consumer-control, creating choices and opportunities for people to make their own decisions. One of the important questions for the movement and its allies is the examination and identification of research frameworks which promote these values.

No research framework is devoid of assumptions and values. Unfortunately, there exist many research initiatives in the area of disability which are solely based on the assumptions of the medical model. As a result, this kind of research activity promotes a view that the problem of disability resides in the individual. This approach does not remove the real barriers to full participation; rather, they encourage and maintain solutions that encourage systemic dependency.

For example, have you ever been asked to participate in a research project where you had a say in deciding what was being studied and how the results were to be used? If the answer is no, then you should be concerned! Research results do influence the people who make social policy in government and this eventually gets translated and shaped into programmes at the community level.

Vic Willi from the Centre for Independent Living in Toronto (CILT) takes this issue to heart in the Centre's most recent publication, called Independent Living and Participation in Research: A Critical Analysis, which was prepared by Gary Woodill in collaboration with CILT. Mr. Willi explains, "We have witnessed the debacle which ensues when social policy is based exclusively on the assumptions of misguided able- bodied professionals. They said we would be better off in institutions where, as it turns out, for quads, you die 10 times faster than if you were living free in the community. People with disabilities are the real experts."

This indeed can be the only sincere starting point for people and researchers who are allied and committed to the goal of the full participation of people with disabilities in our society. An a research project that does not acknowledge this in its design, implementation and interpretation of its outcomes is a liability to that goal.
Participatory research: a research framework which is compatible with the values of Independent Living and the goal of full community participation.

Gary Woodill, a member of CILT's board of directors, presented a fundamental assumption of the participatory research model:

"All research on disability should significantly involve persons with disabilities in the setting of the research agenda, in the formulation of research questions, and in the interpretation and use of the results."

The framework of participatory research assumes that persons with a disability are to be involved in developing the research questions, as well as designing and implementing the research agenda. The role of the research leader becomes that of a facilitator who enables the natural leaders to emerge from the process and to provide assistance and advice as required. The participatory research model, therefore, allows person with a disability to take the responsibility to define the questions relevant to their situations and to create solutions which promote new alternatives.

In contrast, traditional research on disability focuses on the problem of individual inadequacies and the inability to cope within the existing environment. The kinds of solutions it generates maintain the status quo. This type of research which in themselves present problematic barriers toward integration and participation in community life.

Participatory research, however, is on framework which can shift the research focus onto alternative solutions and impact real changes in people's physical and societal environments. A participatory research approach enables persons with a disability to take the responsibilities throughout the research process: organizing the research project; defining how they see and understand the problem; linking the individual problems within a broader social context; and, finally, defining actions and solutions to address these problems.

While participatory research model provides persons with a disability with a good degree of control throughout the research process, other options are available for persons with a disability who do not necessarily want to implement the research themselves.

One other alternative presented by Mr. Woodill is doing research collaboratively with able-bodied researchers. In this model, persons with a disability assume the responsibility to supervise, advise and interpret the research. The research's role in this instance is to carry out the work and collaborate at every step in the research process. This approach still allows control of the research agenda by disability groups. An added benefit to this method is that it also educates able-bodied researchers to the vision and goals of the IL movement and so can gradually build more and more allies for the movement.

There's no denying it; able-bodied researchers will continue to do research on disability. One of the challenges for the IL movement and its allies will be to educate researchers to question their own assumptions on how they view the problem of disability. Do they perceive the problem to be the "disability" (as is the view of the rehabilitation framework), or is their research focusing on questions relating to environmental inadequacies and exploring ways to solve these?

To this end, the IL movement in Canada has already taken a first step by exploring the importance of research and identifying ways in which persons with disabilities can be empowered through the research process itself. Through the initiative of CILT in bringing to the forefront the importance of examining research as a process and an opportunity for empowerment, the IL movement in Canada is now better prepared to educate researchers in working collaboratively towards the same vision: full participation of persons with disabilities in Canadian society - that's what Independent Living is all about!

First published in the fall/winter 1992 issue of Abilities magazine.