Over the last year, I have learned how IDEAS-principles and Indigenous ways of knowing, being and doing, must inform the approach and practice of how the BHI engages with individuals and communities that may face discrimination(s) based on gender identity, age, disabilities, sexual orientation, ethno-cultural identity, residency, and more.
At the BHI, we use the term ‘equity-deserving groups’ to broadly describe people who are among the most vulnerable to brain-heart conditions, however face exclusions to participate in research and to access healthcare.
In one of my first conversations with one of the Indigenous Engagement crosscutters leads, Dr Malcolm King, he mentioned the Elder and theorist, , who initially introduced the concept of Ethical Space. This Indigenous approach involves equally respecting Indigenous and Western knowledge for their strengths and uniqueness while acknowledging bias, power, injustice and conflict. By working towards relationships based on respect, trust, humility and responsibility, the conditions for dialogue are possible.
Dr. Malcolm King further described another related but different concept called etuaptmumk (Two-eyed Seeing) in working with First Nation, Inuit and Métis communities. Etuaptmumk is a principle that Indigenous people have rich knowledge and practices around health and wellness, and that Western science also brings beneficial knowledge and practices. The best way to create conditions for healing and an enabling health system is to combine both. As a trained medical anthropologist who spent most of her career on the African continent learning from African communities about dealing with chronic health conditions, this made perfect sense to me. One term I learned to appreciate is ubuntu meaning our wellbeing is not defined by our self in isolation but in relation to our ancestors and kin relationships. Our mental, physical and spiritual interconnections are context-dependent and culturally grounded.
The 7-Directions Summit
In March 2025, I was honoured with an invitation from BHI’s leadership to represent the BHI Secretariat at the next Mitewekan taking place in Edmonton, Alberta. The purpose of the summit was to discuss brain-heart conditions, from a Two-eyed Seeing perspective, by engaging Indigenous people with lived experiences of brain-heart conditions from the patient, caregiver and Indigenous community perspectives, Indigenous Elders and Indigenous and non-Indigenous medical researchers and other allies. The Summit is part of BHI’s partnership with the Mitewekan—Cree, with an English approximate meaning of ‘the spirit behind the heartbeat’—an Indigenous council of Elders, Knowledge Holders, people with lived and living experience, and health leaders from across Canada. The research and engagement group plays a role of guiding culturally safe brain-heart care and research, using Two-eyed Seeing approaches to improve brain-heart health outcomes for Indigenous peoples. Mitewekanalso serves as the Indigenous Engagement crosscutter for the BHI.
All the participants of the summit stayed in a resort on the Enoch Cree Nation, where suddenly I was one of the few white-presenting persons in an Indigenous space. The morning of, I was greeted by one of the Indigenous Engagement crosscutter staff members, who invited me to find a seat. I found myself within a group of about 20 people chatting in pairs in a warm and friendly atmosphere. I was greeted by a woman Knowledge Holder who reassured me that we were all here to learn and should feel welcome. I found Dr Malcolm and Dr Alexandra King also sitting in the circle discussing with different people sitting around the room. There was a mix of all ages, genders, and ethnicities, including Indigenous ancestry. I met several people, including a person with lived and living experience who is currently working with the BHI. Like me, they are not Indigenous but privileged to be brought into the circle to learn.
The day started with a welcome and a knowledge Holder doing an opening blessing. His words hit me hard. They spoke of the critical need for Indigenous people to feel welcomed, find community, and that this was a very special day to share in a safe space. I experienced the smoke of the sage, as a younger helper who was invited to assist the Elder to smudge around the circle. In this circle, each participant was invited to share something about themselves. Some lived with heart failure, cared for a loved one with a brain-heart condition, had lost a relative to such conditions, lived with a stroke or faced rural or urban-specific obstacles to health. Whoever or whatever it was, their daily lives were marked by the fragility and challenges of living with ill-health. They also expressed the value of life, as opposed to death. I learned as we were oriented on the day that this was a form of Indigenous research. I later learned that ceremonies are a form of Indigenous research, enabling learning, spiritual wellness, and interconnections. I was thankful to be asked as a BHI secretariat representative, as one who is part of the source of funding.
Reflections on the Summit
Now, four months after the experience, what deeply touched me was the afternoon session where women and men were divided into separate sacred sharing circles. The male Elder, who I could see was greatly respected by all, invited all the men to come with him into a separate room. While there were some jokes and laughs about the women and men being divided, each group was now able to talk about the health-related challenges of each gender. Once the men left, I was invited to join the circle. The female Knowledge Holder and facilitator of the group explained that the discussion was to share our experiences of the health care system, of brain-heart conditions, how we live and cope with this, and about our lives overall. Prior to the discussions, we were all given consent forms with information on what the day’s discussions would be used for. We were told that the discussions would be recorded, and that the registration could stop at any point if someone did not want their story recorded. The sharing circle is an Indigenous research method of gathering knowledge by respectful group dialogue that honours traditional teachings, lived experience, and spiritual insight. These safe spaces support education, health and healing.
We went around the circle three times to answer three questions with each participant sharing their experience. It felt organic, like a conversation among close female friends. What I remember is the power of the stories and diversity of them that capture what living with brain-heart conditions as a patient, caregiver, or from an Indigenous community perspective. I became aware that complex brain-heart conditions do not discriminate by age, challenge mental health, and can strengthen what love means in family relationships. For those most impacted, there may be many surgeries, the desire to live life as normally as possible, and treasuring the comfort of loved ones. There are also people facing urgent health needs while being physically and socially isolated, which can make the difference between life or death, or losing a loved one forever.
Mixed into these stories is resilience and the history of coloniality. One person described her brain and heart conditions and how doctors often speak in a biomedical language to communicate the disease to which the patient does not understand. She explained the power she had to challenge the doctor to use other forms of communication, like pictures and plain language. People shared very difficult life experiences, including myself. In no other work context and focus group would I have shared my own personal traumas with a group of strangers. These spaces were safe and told the same stories as academic analysis of brain-heart disorders. The approach brings together the Two-eyed Seeing – the wholistic nature of lived experiences of disease and illness – where the biological, social, physical, spiritual and material are interconnected. It is where witnessing other stories and suffering is a form of healing and resilience. I am grateful for the opportunity to learn.[1]
[1] Based on Indigenous conceptualisations, wholistic represents the whole body or person, which includes the mind, body, and spirit, and embodies health and wellness. It represents the multidimensionality within the person, a balance between the person and others, their family and community, and the environment. It is different from holism, which refers to a system of therapeutics most often considered outside the mainstream of scientific medicine, such as homeopathy, naturopathy or chiropractic.
Learn More
It was an honour to participate in the 7-Directions Summit. It makes all the difference to fully participate as a non-Indigenous person. I learned about how the sacred circles of all women and all men, each facilitated by a respected Elder or Knowledge Holder, help heal and build relationships of support and care. It was in the power of sharing lived experiences through story telling and active listening, and the reassurance from the start of the day, that the space is safe and confidential. I remain humbled by the experience.
If you would like to learn more about Mitewekan and their efforts to including Indigenous perspectives in research, please visit their .
