Democratizing Disability Inquiry

Abstract

The advent of the disability rights movement poses what some suggest to be a conundrum for disability researchers concerned with issues of community and education services, supports, and policy: Have we, in fact, now entered a brave new world of policy decisions based not on detached science but on the impulsive desires of a decidedly ideological collective? In response, we offer an analysis of two related policy debates, deinstitutionalization and school inclusion. We then apply lessons derived from both controversies to suggest a framework of participatory democracy for proceeding with inquiry at a time when people with disabilities are demanding that their voices be heard in research and policy discussions. This charge to mandate or demand is arising on a multitude of contested fronts, including debates over the use of aversives, access to literacy instruction, and—quite prominently—access to facilitated communication training.

Practical strategies for promoting full inclusion of individuals with disabilities in community‐based participatory intervention research

“…Therefore, we recommend beginning with a reasonable estimate and then conducting ongoing assessments of accommodation needs as the study unfolds. Referral to the ADA (2008) may be helpful in determining what is deemed reasonable; however, ethical obligations to provide accommodation should also be considered (Kliewer & Biklen, 2000).…”

“…CBPR is directed toward engaging researchers and community members as equal partners to generate knowledge that is immediately relevant and accessible to communities, especially those who have historically experienced social and economic marginalization (Bricher, 2000; Israel, Schulz, Parker, & Becker, 1998; Minkler, 2005). This aim and its underlying critical and participatory epistemology drive a commitment within the academic‐community partnership to develop strategies that empower community members to participate fully and not be limited to an advisory or “token” role (Kliewer & Biklen, 2000; Lord & Church, 1998; Zimmerman, Tilly, Cohen, & Love, n.d.). This type of equal partnership with full participation, voice, and power in the research process, from beginning to end, constitutes full inclusion.…”

Autism, Autobiography, and Adaptations

“…F or too long, the field of special education has been driven by researchers and educators who have not experienced disability (Kliewer & Biklen, 2000;Kluth, Diaz-Greenberg, Thousand, & Nevin, 2002). A new trend is emerging, however, and people with disabilities are writing their own stories, challenging traditional views of disability, and sharing insights that can help teachers plan for and support all students more effectively and sensitively (Danforth & Rhodes, 1997).…”