Yvonne Spicer believes the research process should mirror what happens when health-care professionals collaborate with patients to map out a treatment plan.

Instead, traditional research on intellectual disabilities tends to be a one-way relationship where researchers select methods without consulting those being studied, she says.

“We’re the ones who go through life with a disability,” says Spicer, who is a self-advocate and person living with an intellectual disability. “We’re the ones who experience the challenges, the barriers and successes, yet we’re often not included in the research design and delivery.”

Spicer is working to change that as a research assistant for a national project initiated by Laura Mullin, Assistant Professor in Applied Disability Studies at Brock University.

Members of the Brock-initiated Participatory Action Research Network met at a recent leadership retreat. Back row from left: Rebecca Hansford, Brock Assistant Professor in Applied Disability Studies Laura Mullins, Elizabeth McDonough, Emily Bulten, Erin Williamson, Yvonne Spicer, Danny Pryke and Associate Professor in the School of Social Work at McMaster University Ann Fudge Schormans. Front row from left: Ashlee Dagenais, Courtney Bishop, Allison Bobbette and Theresa Somerton. The online participant on the screen is Colleen Moyer.

“We’re all working together to learn how to do inclusive and participatory research that is much more collaborative in nature than traditional forms of research,” Mullins says of the Participatory Action Research Network (PARN) project.

Members include self-advocates living with developmental disabilities, students, academic and community-based researchers, and community partners.

“This new way of doing research could better inform how to create and deliver ‘person-centred’ support services, housing and other areas impacting quality of life for adults with intellectual disabilities,” says Mullins.

Traditional intellectual disability research faces a number of barriers, she says, including the assumption people with intellectual abilities are unable to provide consent or basic information, causing the researcher to gather the views of substitute decision-makers rather than those living with the condition.

There can also be power dynamics at play between the family and the disabled person, giving a skewed view of situations, and surveys often don’t always use relevant questions or language easily understood by research participants, she says.

PARN is organizing a three-day research camp in October that will bring together adults with developmental disabilities, support professionals, students, and established and emerging scholars to learn about inclusive and participatory research.

The camp will focus on the themes of leadership, inclusive and accessible research, knowledge mobilization, community building, networking and strategic planning.

Self-advocate and research assistant Ashlee Dagenais says she hopes the research camp will help the research community develop skills and techniques to effectively carry out inclusive research.

“Some researchers assume that people with disabilities have nothing to add to the topic or project, when in fact we have plenty to offer,” she says. “Sometimes we are afraid to speak up out of fear of being told our idea wasn’t a good idea.”

In addition to facilitating workshops, Dagenais, Spicer and three other self-advocates are paid as research assistants paired with five student research assistants responsible for co-chairing committees organizing the research camp.

Funding the event is a $79,702 Connection Grant from the Social Sciences and Humanities Research Council of Canada (SSHRC).

Matching the grant are contributions from PARN’s partners, including L’Arche Canada, Karis, Community Living Haldimand, Community Living London, Ontario Association on Developmental Disabilities, Nicole Bedford Film, Madeline Burghardt from the University of Manitoba, Ann Fudge Schormans from McMaster University, Anna Przednowek from Nipissing University, and Priscilla Burnham Riosa among others from Brock.

“The Government of Canada is deeply committed to the principles of equity, diversity and inclusion. The Participatory Action Research Network is a great example of what can be achieved when we all work together to achieve meaningful change,” says Chris Bittle, Member of Parliament for St. Catharines.

“By giving voice to people who have been traditionally marginalized, this project has wonderful potential to revolutionize research in the field of disability,” says Vance Badawey, Member of Parliament for Niagara Centre. “Sharing knowledge about newer and inclusive ways of doing research will result in a more profound understanding of people’s lived experience with developmental disability.”