Last month, disability researchers, practitioners and self-advocates gathered online and in Pond Inlet to explore accessible and inclusive research.
Held Feb. 18, the event celebrated the “Photovoice: Voices Lost In Crisis” project, which was funded by a grant from the Special COVID-19 Dean’s Discretionary Fund in the Faculty of Social Sciences. The project captured the lived experience of 13 adults with intellectual and/or developmental disabilities (IDD) during the COVID-19 pandemic.
But the daylong agenda also launched a new Participatory Action Research Network (PARN) that could help researchers and people with lived experience collaborate on research to understand and address issues that affect quality of life for adults living with intellectual disabilities.
Assistant Professor Laura Mullins in the Department of Applied Disability Studies says that PARN will bring together individuals who are passionate about participatory action research and provide opportunities for individuals across the province to take part, be it by deciding on research topics, collaborating in research or helping share what is learned and how to better support the IDD community.
Mullins adds the goal is to work toward “authentically co-created” research and events, which is part of why this inaugural event was planned over several months by a committee that included researchers, professionals in the field and self-advocates living with intellectual disabilities.
The whole team worked to ensure the event was accessible and would meet the needs of all who might want to take part.
Self-advocate Ashlee Dagenais was a member of the event organizing committee and also presented alongside Mullins about the Photovoice project. She says that coming together after years of interacting through screens meant a great deal.
“My biggest takeaway is I’m not alone, and maybe I can help others with intellectual disabilities even though we live in different districts,” says Dagenais. “Our lives matter, and we’re trying to make this world a better place for others who may not have a voice or don’t know that they’re allowed to speak up.”
Self-advocates travelled from as far as the Northwest Territories to take part in the event, which was also attended by individuals from a wide array of organizations and universities and funded by a Vice-President Research, Building Capacity Grant from the Lifespan Development Research Institute.
A team of student volunteers helped ensure the day ran smoothly, both in person and online.
Among the virtual attendees was planning committee member Anna Przednowek, Assistant Professor at Nipissing University’s School of Social Work. She also chairs the Ontario Association on Developmental Disabilities Research Special Interest Group alongside event organizer and presenter, Brock’s Courtney Bishop (BA ’03, BA ’04, MA ’13).
Przednowek says the design of the event was significant, because often when self-advocates are invited to typical research events, there are barriers or power imbalances that can affect results.
“The event was very well attended by self-advocates, and having such a strong presence of self-advocates on campus and online was powerful,” she says. “It’s a bit of a disruption to a space where we haven’t always seen self-advocates not only sharing space with researchers and collaborators but also building their capacity to become co-researchers, as well. Boundaries blur a bit more when we work towards more collaborative and more inclusive research, and I think that’s really great.”
Professor Maureen Connolly in the Departments of Kinesiology and Child and Youth Studies describes the event as “highly energized” and says it was an opportunity for responsible knowledge mobilization, as well as the start of something new.
“When you do participatory action research generally, and with disabled people specifically, you follow the principles of disability justice and publicly credit the participants’ creative work,” says Connolly. “It’s incumbent on those of us who do disability research to build events like this into research plans, and to include honoraria and other forms of compensation for self advocates in research budgets, so that the individuals who participate get celebrated and we make sure that we’re honouring their participation in meaningful ways.”
For Mullins, the goal of the event, and of PARN moving forward, is meaningful change.
“We had really great discussions in the breakout rooms, online and in person, where we talked about what everyone would like to see out of a network and what would it mean to people if it were to come together,” says Mullins. “And one of the responses was that it would mean ‘everything’ that people were listening and that we could actually work together to help promote change.”