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 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 from 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) organized a joint planning seminar on the topic of research in the Independent Living movement. This meeting brought together CAILC’s 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.

A CRITICAL ISSUE: SOME RESEARCH INITIATIVES ARE COMPATIBLE WITH THE GOALS OF FULL PARTICIPATION BY PERSONS WITH A DISABILITY IN SOCIETY; OTHERS, HOWEVER, ONLY ENCOURAGE CONTINUED SYSTEMIC DEPENDENCY.
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 frame work 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."

THE REAL EXPERTS ON DISABILITY ARE THE PEOPLE WHO LIVE WITH A DISABILITY.
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. And 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 service as required. The participatory research model, therefore, allows persons 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 framework in the long term does not change environments which in themselves present problematic barriers toward integration and participation in community life.

Participatory research, however, is one 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 a 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 researcher’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.

What role can able-bodied researchers play?

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 sane vision: full participation of persons with disabilities in Canadian society -- that’s what Independent Living is all about!


EMPLOYMENT TRAINING COMING TO ILRC
Thanks to a grant received from Employment and Immigration Canada, CAILC will be working with local ILRCs to develop employment training programmes. Through this funding, we will be in a position to work on individual strategies with the ILRCs to respond to the needs of the local community. Already, centres are running a variety of employment-related initiatives; for example, the Centre for Independent Living in Toronto (CILT) operates a job hotline; Thunder Bay has an Employment Committee and has produced an informative video on the employment of persons with disabilities; and Winnipeg’s Independent Living Resource Centre has a programme for people with disabilities to gain job experience through structured volunteer placement in the Centre’s office.

Over the coming months, CAILC will be exploring with the ILRC the various options aimed at responding to the needs of people with disabilities. We will also be developing strategic partnerships with existing employment agencies aimed at improving the opportunities for people with disabilities.,

For more information, contact CAILC at: (613) 563 2581.


CAILC AGM BRINGS CANADA’S ILRC TO TORONTO
45 participants from across Canada converged on Toronto to advance the independent Living agenda. The leaders of the movement met to take stock and to chart a steady course towards the empowerment and self-determination of persons with disabilities. "Often it is the smallest steps which start people on the road to self-actualization," said Henry Enns, the Chairperson of the Canadian Association of Independent Living Centres (CAILC). He went on to say that "society often overlooks the impact which the ILRCs [Independent Living Resource Centres] have by providing individuals with choices."

Now, with 16 Independent Living Resource Centres scattered across Canada, CAILC is the glue for people with disabilities. Many opportunities for exchange were provided, meaning that ideas are flowing across the country, across linguistic borders and despite rural and urban distinctions. This cross-pollenization has an energizing effect in the local ILRCs, where new approaches are bound to be tried back home.

The halls were buzzing with talk of Direct Individualized Funding (DIF). Leaders in Ontario learned that the province of Quebec is already using this approach, with great success. The Independent Living Movement measures success in the amount of control the consumer has and, as an outcome, their individual satisfaction.

In the various workshops, discussions were focused on the ILRC’s role in employment training for people with disabilities, and research.

CAILC ENDS ITS SEARCH FOR A NEW NATIONAL DIRECTOR
Recently, having advertised an opening in its most senior staff position, CAILC has completed the search for its next NATIONAL DIRECTOR. After receiving applications from 68 individuals, the selection committee had a difficult job identifying the candidate. Following a ranking of the applicants, a written questionnaire, a telephone interview, face-to-face interviews, etc., the individual selected is Traci Walters of Port Colborne, Ontario.

Well known to the ILRC network, Traci has been the Executive Director of the Niagara Centre for Independent Living for the past four years. Traci has distinguished her Centre through such activities as AIDS/HIV education projects aimed at people with disabilities, yearly consultation forums with over 200 local consumers in attendance, and the successful ILRC core programmes. The Niagara Centre is a model of a regional centre, serving numerous rural communities along with several larger cities.