We are Tasha Boyer, Tamara Douglas, Vanessa Hiratsuka, and Nathan Rabang, research and evaluation staff at the Center for Human Development at the University of Alaska Anchorage. Our center’s mission is to improve the quality of lives for people who experience disabilities and their families, across the lifespan, through interdisciplinary training, technical assistance, exemplary service development, applied research and dissemination of information. Alaskans share a vision of a flexible system in which each person directs their own supports, based on their strengths and abilities, toward a meaningful life in their home, their job and their community. The Alaska shared vision includes supported families, professional staff and services available throughout the state now and into the future.
Disability rights advocates emphasize “Nothing about us without us,” yet research and evaluation teams struggle to reflect the disability populations they focus on. As research and program evaluation teams work towards investigating issues of equity, diversity, and cultural representation in disabilities research, inclusion must incorporate meaningful attention and significant changes to existing hiring, training, and project management so the needs and desires of those with intellectual, developmental, and physical disabilities and their family members are met. As such, individuals who have lived experience with disabilities should be present during all steps of research and program evaluation projects in meaningful ways to progress the impact of disabilities work. As we develop inclusive teams in our research, program evaluation and surveillance projects, we share our reflections as we work to improve our mindset and practice of inclusion.
Be humble and curious. We recommend that research teams approach inclusive research with a degree of humility and curiosity: inclusive research is relatively new in the field, and there is discomfort that may be felt between all team members involved. It is important to wholly include individuals with lived experience in the research process.
Give people agency. Research and evaluation teams intending to include individuals with lived experience should involve them in every part of planning processes and debrief them fully on the scope of work, should they consent to this degree of participation. This includes, but is not limited to: creating the project work plan, searching for and applying to grant funding, developing shared timelines, designing training processes, and creating tools for comradery-building between team members.
Offer equitable, accessible training. While much training for research projects is often beyond the control of the research leads, we recommend that PIs create training alternatives that are comprehensive, accessible, and equitable.This could look like setting aside one-on-one time with individuals with lived experience to review training materials, rewriting training overviews in plain language, and ensuring there is space for all participants to ask questions.
Focus on teams. We recommend institutions focus on long-term recruitment and investment of researchers, particularly researchers with disabilities. This can give individuals a sense of the timelines of their projects and help minimize staff turnover. In addition, strong team-building and a sense of belonging makes every office or work environment happier and more efficient.
The Association of University Centers on Disabilities has gathered a slew of inclusion resources at their crosswalk of equity, diversity and inclusion (ED&I) -related Resources in the UCEDD Network.
The Academic Autism Spectrum Partnership in Research and Education (AASPIRE) has developed guidelines for inclusion as co-researchers and study participants and a process for recruiting new autistic partners to collaborate with AASPIRE.
We have learned from reading, reflecting and acting on recommendations by researchers with lived experience with disabilities such as this article by Dr. Monique Botha and this past AEA 365 post by Melanie Kawano-Chiu.
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