Earlier this month, the 2023 Gathering on Indigeneity, Neurodevelopmental Disabilities and Mental Health in Ontario brought Indigenous community members, including those with lived experience of neurodevelopmental disabilities and mental health concerns, together with researchers and clinicians to share knowledge and form connections.<\/p>\n
The two-day event was funded by a Canadian Institutes of Health Research (CIHR) Planning and Dissemination Grant awarded to Associate Professor of Applied Disability Studies Kendra Thomson and principle knowledge user Louis Busch of Shkaabe Makwa at the Centre for Addiction and Mental Health (CAMH), who co-organized the event with the support of research assistants Melanie Burgess and Sarah Bernier and Brock\u2019s Knowledge Mobilization Officer, Jayne Morrish.<\/p>\n
Busch, a Community Support Specialist, says maintaining a community focus and relying on community members to lead conversations throughout the event\u2019s panels, presentations and circles helped \u201cstrengthen relationships and establish a new network of collaborators.\u201d<\/p>\n
\u201cThis gathering is just the beginning, we hope, of something that will lead to tangible action in the near future,\u201d says Busch. \u201cIndigenous communities have been subjected to research for the sake of research for many years, and I think what we heard loud and clear was that this needs to lead to something of substance that will positively impact families and individuals living with neurodevelopmental differences.\u201d<\/p>\n
Burgess, a master\u2019s student studying self-compassion and mental health through the lens of sport psychology, says that hearing from both community members and scholars was a meaningful experience.<\/p>\n
\u201cI learned a lot about neurodevelopmental disabilities and especially how Indigenous culture looks at them \u2014 that they are common in Indigenous culture but it\u2019s not talked about, so it\u2019s great that this gathering addressed a topic that isn\u2019t really discussed,\u201d she says. \u201cEveryone got a chance to contribute their knowledge, but a lot of it was listening and learning from everyone else.\u201d<\/p>\n
Bernier (MA \u201922) agrees that listening and learning was a key factor, especially around topics that are important to her everyday work as a research analyst at CAMH\u2019s Azrieli Adult Neurodevelopmental Centre.<\/p>\n
\u201cIn current policies regarding personal health information, privacy in the way that data is collected and shared is really important, but we heard from people with lived experiences and cultural experts about how their data was and continues to be misused by government agencies or white, colonial researchers,\u201d she says. \u201cI deal with a lot of data, so that\u2019s something that I really want to help with. It opened my eyes to an issue that I didn\u2019t know existed, one that people need to know about so we can do something about it.\u201d<\/p>\n
Event participant JJ Thunder Man was gifted an eagle feather by Elder Ron Linklater for sharing his personal experiences with the gathering.<\/p>\n
\u201cOn the first day, I was shy,\u201d he says. \u201cAnd then I heard people talking, sharing their stories, so on the second day, I don\u2019t get shy no more and I talked.\u201d<\/p>\n
For Thomson, who has been working with Busch on the project since 2019, it has been crucial to highlight an issue that can be burdened by stigma and has not received adequate attention in Ontario or Canada.<\/p>\n
\u201cCentring the voices of people with lived experience within this particular intersection, those who are Indigenous and labelled with neurodevelopmental disabilities, is the only way we can really do meaningful work,\u201d she says. \u201cWe tried really hard to engage people with lived experience, but that\u2019s a continuous process and we can always do better at that. I think what can come out of this is learning how to do that better, or at least keeping that at the centre of what we\u2019re doing.\u201d<\/p>\n
Morrish agrees, noting that devoting two full days to the mutual sharing of expertise created a real opportunity for knowledge exchange leading to lasting impact.<\/p>\n
\u201cBringing together researchers and community members to move our knowledge and goals forward in a collaborative way offered a perfect melding of the content experts \u2014 the researchers and others with research-based knowledge \u2014 with the context experts \u2014 those who live in the community and have lived experience,\u201d she says.\u00a0 \u201cCommunity and those with lived experience bring critical knowledge regarding why research matters, how it matters, for whom it matters and how it can be best implemented, and that\u2019s when you can really create and design impactful research.\u201d<\/p>\n
The organizers are grateful to the following for additional funding and partnership:<\/p>\n