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A gathering of Indigenous community members, Knowledge Keepers and Elders, service providers, researchers and non-Indigenous allies met in Toronto to talk about neurodevelopmental disabilities. (Jason Jenkins), Author provided (no reuse)

Hearing the voices of Indigenous people with neurodevelopmental disabilities

Indigenous Peoples with neurodevelopmental disabilities (NDDs) and mental health challenges are among the most marginalized groups in the country. NDDs include things like autism and attention-deficit/hyperactivity disorder (ADHD).

Research points to persistent health inequities, and mental health research has tended to overemphasize suicide and substance use in Indigenous populations.

Although their stories also tell of strengths, struggles and important community contributions, the voices of Indigenous Peoples with NDDs often go unheard.

A report that includes immediate and long-term calls to action was developed to shed light on the experiences of this under-represented group and create meaningful change in their lives.

Forming the Circle: 2023 Gathering on Indigeneity, Neurodevelopmental Disabilities and Mental Health” was informed by a community event held last spring that brought together Indigenous community members, Knowledge Keepers and Elders, service providers, researchers and non-Indigenous allies from across Canada.

The report was authored by researchers from Brock University (Kendra Thomson) and the Centre for Addiction and Mental Health - CAMH (Louis Busch) and reflects the findings from the event and recommendations for future actions. Attendees provided feedback on the report in focus groups after the event and before the report was released.

The gathering

The gathering explored how colonization, systemic discrimination and determinants of health such as food insecurity, housing and access to cultural safe services impact individuals, families and communities.

At the 2023 Gathering on Indigeneity, Neurodevelopmental Disabilities and Mental Health at the Centre for Addiction and Mental Health in Toronto, people with lived experience, traditional Knowledge Keepers, clinicians and researchers from across Canada shared knowledge and expertise.

Read more: As an Indigenous doctor, I see the legacy of residential schools and ongoing racism in today's health care

Gathering attendees concluded that the path forward should begin with establishing a national network on Indigeneity, neurodevelopmental disabilities and mental health to take action that will enhance the health and well-being of Indigenous Peoples with NDDs and mental health challenges.

Some of the long-term recommendations within the report call for:

  • The creation of programs to promote and preserve culture;

  • Partnerships between Indigenous and non-Indigenous organizations, with training provided to enhance the cultural safety of programs;

  • The development of culturally appropriate assessment tools and supportive programs for Indigenous Peoples with NDDs;

  • Examination of the experience of Indigenous Peoples with NDDs within the criminal justice system, youth populations, child welfare system and those impacted by environmental issues; and

  • Evaluation of the impact of incorporating traditional teachings and medicines within educational, social and health-related programs.

JJ’s story

Among those in attendance was JJ Thunder Bear Man, an Anishinaabe man who travelled almost 2,000 kilometres from Dryden to Toronto to share his story at the gathering.

Born in the early 1980s in a community in northern Ontario, JJ was put into the foster-care system at age five as his parents faced the realities of their experiences at residential schools.

Adolescence came with its own challenges, with JJ getting involved in a gang and struggling with addiction. His journey toward healing and recovery began when he joined Community Living in Dryden at the age of 18. His support team helped him to connect to his culture and to community.

The revelation of his spirit helper, the bear, and his spirit name, Thunder Bear Man, offered a powerful lens into JJ’s path to healing and connection to culture.

His heartfelt desire to reconnect with his family’s language, lost over time, also added a poignant layer to his story. He recalls having to ask his sister what his mother was saying when they finally got to visit years later, as she didn’t speak English, and he couldn’t speak Ojibwe.

JJ’s story, not unlike other young Indigenous Peoples living with NDDs and mental health challenges, highlights the dire need for preserving language and tradition.

Beautiful differences

JJ’s story is one that contains experiences familiar to many Indigenous Peoples with neurodevelopmental differences and mental health challenges.

During the event, JJ issued a plea for kindness, understanding and companionship for neurodiverse individuals within Indigenous communities, reflecting on the impact acknowledgement and support can have.

The importance of a supportive “strength-based” approach was a theme that emerged again and again at the gathering, stressing the need to recognize individuals’ unique contributions, accomplishments and abilities. Many participants used the term “neurodevelopmental difference” rather than disability or disorder.

This report is intended to mark only the start of a broader discussion, new and strengthened relationships and a collective commitment across the country to take action to improve the lives of Indigenous Peoples with beautiful differences.

We would like to acknowledge JJ Thunder Bear Man for bravely sharing his moving story with us, and his helper, Lesley Barreira of Surrey Place, for supporting him in doing so.

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