Feature Issue on Engaging Communities Underrepresented in Disability Research

From the Editors

This issue of Impact brings attention to the lack of data and knowledge about the interests, needs, identities, challenges, resilience, and outcomes of people with disabilities from minoritized racial, ethnic, cultural, and linguistic communities.

Overview articles in this issue are derived from the 2022 State of the Science Conference: Engaging persons with IDD from underserved racial, ethnic, linguistic, and cultural groups in research. Hosted by the Research and Training Center on Community Living at the University of Minnesota, the virtual event convened researchers, people from minoritized groups with lived experience of disability, advocates, and others across the disability field and beyond. Their mission: To establish an agenda for research, practice, and policy addressing the intersectional disparities in the disability experience.

Short video summaries were created for each of the research strands along with personal perspectives on each topic by individuals with lived experience with disability. You can watch the videos on our website.

As with all Impact issues, this one explores promising programs, including Makom’s “down to the studs” self-transformation and cultural adaptations of the Charting the LifeCourse framework. You’ll glimpse inside the State of the Science meeting to learn specific, pressing research questions in various realms of community living. And you’ll meet people with disabilities and their families, telling their stories in their own words about what it is like living at the intersection of their personal identities.

We acknowledge the ethical risks involved in this work and the historic abuses of minoritized populations in the research process. We must make concerted efforts to involve people with disabilities from historically marginalized communities in all phases of research and be vigilant about testing our conclusions. There is an urgency to research questions posed in this issue, which have gone unanswered for far too long. The issue calls us to invest in community-engaged research that focuses on the lived experiences and intersecting identities of people with disabilities and to work together to increase knowledge and effect change in how research is conducted and shared. We are committed to meaningful, collaborative inquiry that leads to more equitable lives for all people with disabilities, their families, and the communities in which they live.