“I kind of have two strands of research. One is this methodological question of how do we do participatory research? Well, there are people doing it and but I still feel like there’s this big gap and in it being scaled up, and more people being confident, we need more people to feel confident doing it. And we need it when people say participatory action research for us to know what that means
for us to trust it, that it’s authentic for us to trust that power is being shared. So I’m really interested in advancing some kind of methodological conceptual thinking around well, what is it when we say participatory action research for this population, and we as a field have agreed on some values, but
then how we operationalize them how we make them work.”

This quote from Dr. Ariel Schwartz, PhD, OTR/L, is just a fraction of what she talks about in this episode of the MHDD crossroads podcast. Dr. Schwartz is a postdoctoral fellow at the Center for Psychiatric Rehabilitation at Boston University. She has worked with young adults with IDD for over 15 years. Ariel’s research is focused on figuring out how to best include people with IDD in the research process. Including young adults is called “inclusive research.” Ariel wants to learn the best way to do inclusive research, because she believes that people with IDD have a lot of knowledge and experience that can help make research more useful to people with disabilities. Ariel also studies peer mentoring and employment for young adults with IDD-MH. She tells us about her early engagement with the disability community and discusses the importance of meaningful inclusion of people with disabilities in research, beyond the tokenism frequently present in academic research. Ariel describes participatory action research and how she has implemented it in work with peer-mentoring, developing relationships with self-advocates, and giving them space to actively steer research. We will be interviewing some of the self-advocates that work with Ariel in the coming months, so we can hear directly from them and learn about their experiences in this process.

Transcript of this episode

Other Links:

Participatory Action Research (PAR)

Website with information about a PAR team

Inclusive research information from Australi

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