Role of Canadian user‐led disability organizations in the non‐profit sector

Abstract

User‐led disability organizations have emerged as an important force in the non‐profit sector. While much is known about the traditional disability organizations that began to proliferate in the 1950s (e.g. National Institute for the Blind), relatively less is known about the user‐led organizations that emerged in the 1970s. Using a collective case study approach, phase 1 was a policy review and key informant interviews with members of user‐led and traditional organizations and government. Phase 2 surveyed affiliates of user‐led organizations. Phase 3 integrated the findings from phases 1 and 2. Major themes were that user‐led organizations: reflected a new paradigm and gave voice to people with disabilities; had a unique role in systemic advocacy and shaping policy; that leadership is critical but in need of rejuvenation; had links with other organizations which provide a collective voice, solidarity and hope; had diverse strategies for local resource mobilization; had financial support from government which was both constrained and mobilized.