Announcing the John Lord Award

At our Annual General Meeting in Montreal in November, our National Board of Directors unanimously agreed to recognize John Lord for his excellence in the area of participatory research. In fact, they created a national award, the John Lord Award of Excellence in Participatory Research and Independent Living.

The first recipient was John himself, who truly exemplifies and demonstrates participatory research methodologies that promote and respect the principles of the Independent Living (IL) movement in Canada.

Just as the (IL) movement empowers people with disabilities to examine choices and make their own decisions, participatory action research calls for people with disabilities to decide which research topics are studied and how people with disabilities will be involved.

For too long, people with disabilities have been a curiosity to researchers, but we have had little or no control over the focus of the research, the methodologies, and how the results are used. The imbalances that resulted often led to further exploitation of us and only furthered the agendas of professionals.

In his book The Politics of Disablement (1990), Michael Oliver, a British sociologist with a disability, lists three main problems with research that uses people with disabilities as subjects:

1) most research questions “ultimately reduce the problems that disabled people face to their own inadequacies or functional limitations”;

2) most research that has persons with disabilities as subjects “has failed to improve the quality of life for them, while doing no harm to the career prospects of the researchers”; and

3) “the theoretical underpinnings of much research on disability have usually been so divorced from the everyday experience of disabled people that they have felt victimized by professionals...”

Oliver concludes that “for these reasons more and more disabled people are refusing to participate in research over which they have no control and which they regard as likely to further their oppression.”

The Centre for Independent Living in Toronto (CILT) has long been a promoter of participatory research. According to CILT’s 1992 publication Independent Living and Participation in Research, “As a social movement, the Independent Living movement has an ethic of emancipation or liberation of persons who are under the control of institutional or professional structures. It would seem that the most appropriate forms of research to take place with the participation and approval of Independent Living Centres would be those which have a critical and emancipatory perspective, and which gave disabled persons control over the formulation, results and uses of any research on disability which involves Independent Living Centres” and people with disabilities.

CAILC has conducted and commissioned a number of research projects in the area of Independent Living and has asked John Lord from Kitchener, Ontario, to lead many of them. We have admired John’s skill in incorporating and participatory research principles into all of his research endeavors.

Recently John completed third-party research he completed for CAILC’s Navigating the Waters pilot project. Funded by the Opportunities Fund of the Department of Human Resources Development, Navigating the Waters tested an IL approach to enable people with disabilities to gain employment. John worked closely with an advisory committee and is just putting the finishing touches on the final report.

CAILC hopes that the John Lord Award for Excellence in Participatory Research and Independent Living will encourage more researchers to embrace the notion of the full and active participation of people with disabilities in research. To nominate an individual or group for the award, call CAILC at (613) 563-2581. Choice, Flexibility and Control in Community Research is also available through CAILC or at any Independent Living Resource Centre.

For a copy of Independent Living and Participation in Research: A Critical Analysis (available in English or French), call CILT at (416) 599-2458.