Bringing Indigenous ways of knowing to neuroscience

Dr. Judy Illes, professor of neurology in UBC’s Faculty of Medicine and director of Neuroethics Canada, and her research collaborator Dr. Melissa Perreault, a member of the Métis Nation and an associate professor in the Department of Biomedical Sciences at the University of Guelph, are working with research partners and Indigenous scholars and communities to bring Indigenous knowledge and understandings into brain science. 

They recently co-authored a seminal paper on integrating Indigenous perspectives with Western approaches in neuroscience. The paper was informed, in part, by the work of Dr. Illes’s former graduate student, Louise Harding, on engaging with Indigenous communities in brain science. 

We caught up with Dr. Perreault, Dr. Illes and Louise Harding now at the University of Sydney School of Medicine, to learn about how — and why — brain researchers are integrating Indigenous ways of knowing into their work. 

Why is an Indigenous understanding of brain health important for neuroscience? 

Dr. Melissa Perreault (MP): In many Indigenous communities, our mental health is understood as being interconnected with other aspects of our being — with our spirituality and physical wellbeing, for example. If a medical doctor is treating an Indigenous person for a mental health disorder, they need to recognize how the spirituality and cultural traditions of Indigenous people can help in their healing process. It’s about thinking about the person as a whole and, Indigeneity aside, we should be doing that for everybody.

Dr. Judy Illes (JI): The way that we embrace different understandings of the world — let alone of the mind and brain — affects personhood, decision-making, autonomy, responsibility and agency. The more knowledge we can learn about different ways of understanding, the better care we can offer people when they are affected by neurological and mental health issues.

Louise Harding (LH): In all areas of health research, if we’re not working with Indigenous peoples in the context of colonization, of racism, of healing, of self-determination, then there’s a huge risk of perpetuating and doing additional harm to people. We can’t think about serving Indigenous populations without first considering how even the way we’re doing our research could be oppressive.

“The way that we embrace different understandings of the world… affects personhood, decision-making, autonomy, responsibility and agency. The more we learn about different ways of understanding, the better care we can offer people when they are affected by neurological and mental health issues.”

– Dr. Judy Illes

What does incorporating Indigenous ways of knowing into scientific research look like? 

JI: An important piece in expanding the scope of neuroethics — that is, scholarship at the intersection of ethics and neuroscience — has been to understand perspectives beyond biomedical explanations of disease. These are perspectives that encompass a range of understandings of the brain and mind. When it comes to conducting research, this means engaging communities, with their values and knowledge, as full partners from the initial process of inquiry through to research discoveries and onto the translation and dissemination of knowledge. This includes meaningfully giving back.

One example is the collaborative research that Neuroethics Canada and the Division of Neurology here at UBC has done with the Tahltan First Nation in northern British Columbia, where a number of families have a unique genetic mutation associated with early-onset Alzheimer’s disease. Through long-term collaboration, we brought together our combined knowledges and understandings about the disease and the needs of the community, where intergenerational fractures occurred because of the history of the Residential School system. This also supported the co-creation of resources that are culturally relevant and meaningful to Tahltan communities.

MP: Communities really need to have a voice in the questions that are being asked in research. It’s important because Western views and Indigenous views — which themselves vary from community to community, culture to culture — might be completely different. For example, depending on the community, they may see a disability completely differently than we see it. That word may not even exist, or they might see it as a gift. It’s about listening and relationship-building, rather than coming in thinking that there is a problem that needs to be fixed.

In Canada, we have a term, Two-Eyed Seeing, which was coined by Mi’kmaw Elders Albert and Murdena Marshall. It means learning to see with the strengths of both Indigenous and Western knowledges and ways of knowing.

LH: Often research projects are focused on a deliverable: what’s the final line on this? But what can matter more is the how — how we research and approach brain health, working with Indigenous peoples. It’s more about how we approach neuroscience, neurology, neurosurgery in a way that is collaborative, decolonial, anti-oppressive and that centres Indigenous voices. For those voices to speak and determine the agenda.

“For example, depending on the [Indigenous] community, disability might be seen in a completely different way. The word might not even exist, or it might seen as a gift. It’s about listening and relationship-building, rather than coming in thinking there is a problem that needs to be fixed.”

Dr. Melissa Perreault

How can neuroscience better integrate a Two-Eyed Seeing approach? 

JI: The key is non-tokenistic partnership that embraces dual and multiple perspectives. It’s about honouring, respecting and appreciating different knowledge systems, definitions, values and priorities, and applying them authentically in research and care.

MP: It’s one thing to think about bringing Indigenous knowledge into neuroscience, but how do we even accomplish that when there are virtually no neuroscientists that are Indigenous? I think capacity-building is critical. There needs to be more support for building environments that Indigenous people can see themselves in. These rigid colonial structures need to bend if there’s going to be true authenticity and Indigenization. We need to make sure that people understand that we bring our culture with us no matter the discipline we are in, and that includes neuroscience.

LH: In working group discussions with Indigenous people for my Master’s thesis, something that really came through was that Indigenous peoples need the same level of access to new and high-tech treatment options as anyone else in the world. Even if someone is very involved in their cultural healing, they need to be offered equal access to all of these interventions. Everyone should have the opportunity to self-determine whether and how they integrate their Indigenous healing approaches with Western healing approaches. It’s up to Indigenous people, as individuals, to decide.

This story was originally posted in UBC Medicine’s Pathways magazine.