![\"Two](\"https:\/\/brocku.ca\/brock-news\/wp-content\/uploads\/2024\/08\/EmbeddedMullinsPhoto-copy-1050x650.jpg\")
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.<\/p><\/div>\n
\u201cWe\u2019re all working together to learn how to do inclusive and participatory research that is much more collaborative in nature than traditional forms of research,\u201d Mullins says of the Participatory Action Research Network (PARN) project.<\/p>\n
Members include self-advocates living with developmental disabilities, students, academic and community-based researchers, and community partners.<\/p>\n
\u201cThis new way of doing research could better inform how to create and deliver \u2018person-centred\u2019 support services, housing and other areas impacting quality of life for adults with intellectual disabilities,\u201d says Mullins.<\/p>\n
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.<\/p>\n
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\u2019t always use relevant questions or language easily understood by research participants, she says.<\/p>\n
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.<\/p>\n
The camp will focus on the themes of leadership, inclusive and accessible research, knowledge mobilization, community building, networking and strategic planning.<\/p>\n
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.<\/p>\n
\u201cSome researchers assume that people with disabilities have nothing to add to the topic or project, when in fact we have plenty to offer,\u201d she says. \u201cSometimes we are afraid to speak up out of fear of being told our idea wasn’t a good idea.\u201d<\/p>\n
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.<\/p>\n