Disability advocacy organizations: a descriptive framework

The purpose of this paper is to offer a descriptive framework to analyse the participation of people with disabilities in policy advocacy over the past 20 years.

The study used a qualitative research design to describe and analyse organizations participating in policy advocacy on behalf of people with disabilities in Canada between 1981 and the present. Data for the study were assembled through interviews with key informants who had participated in three policy cases: the Charter of Rights and Freedoms, 1982 (federal); the Canada Clause of the Charlottetown Accord, 1991 (federal); the Ontario Consent to Treatment, Advocacy and Substitute Decision-making bills, 1993-1995 (provincial). For each of the three cases, key informants were identified who could report with authority on the participation of individuals or groups representing people with disabilities. Interviews with key informants were conducted by the investigators, transcribed and coded to produce five dimensions along which advocates described their organizations.

Three ideological dimensions were identified to describe organizations representing people with disabilities: purpose, tactics, and view of disability. Two practical dimensions were also identified: membership and resources. Each of these dimensions is described in detail with quotes from the interviews to illustrate.

These five dimensions result in a descriptive framework for discussion and comparison of organizational characteristics of advocacy organizations representing people with disabilities. Further, the framework affords a vehicle for discussion of the relative success of policy participation on issues affecting the lives of people with disabilities.