Promoting Inclusive Anti-Oppressive Research Practices: Community-Based Research with Young Adults with Developmental Disabilities

Background: Young Adults with Developmental Disabilities (YADD) face systemic exclusion and discrimination across multiple domains of society, including meaningful participation in research studies. Objective: Drawing from three community-based studies, were present a Model of Inclusion in Community-based Studies with Persons with Developmental Disabilities. Our model applies anti-oppressive and inclusive approaches and discusses strategies that researchers may apply to promote meaningful inclusion of YADD and their families in research. Methods: The studies were conducted between 2012 and 2017 (Project 1: 57 participants, Project 2: 28 participants, and Project 3: 85 participants); qualitative interviews were conducted with YADD, their caregivers and service providers. Approach: We applied flexible research strategies to accommodate and include YADD and their families, such as inviting YADD and parents of children with developmental disabilities/ YADD to participate on the projects’ Advisory Committees; adapting recruitment and fieldwork instruments for YADD (e.g. flexible options for interview location and formats according to their needs, adapting interview guides), accommodating caregivers to be present during the interviews with YADD when required; inviting YADD and families with children/ YADD with DDs to provide feedback on knowledge transfer and dissemination activities, and participate in them (e.g. as co-authors and co-presenters in knowledge transfer activities). Discussion: Research has historically overlooked, diminished, and excluded the voices of people with disabilities. As researchers we need to be critical of the research strategies we apply in research with marginalized populations and engage in reflexivity. We need to ask ourselves whether our studies are empowering the populations we are studying or reproducing the social exclusion of persons with disabilities as part of the research process itself.