Making Healthcare Smarter: Seeing Medical Ethics Differently
Lisa Boivin is a member of the Deninu Kue First Nation in the Northwest Territories. She paints image-based stories that explore the gap between medical and land-based Dene ethics. She is a graduate student at the Rehabilitation Sciences Institute at U of T’s Faculty of Medicine.
Lisa recently presented her art and her story at the 12th Annual Bloorview Research Institute Symposium, including her image above, called Holding Thunderbird. She also sat down with BLOOM, the digital magazine of Holland Bloorview Kids Rehabilitation Hospital, to share her story. Read the complete, original interview: Lisa Boivin paints stories about medical ethics beyond words.
BLOOM: Why did you study bioethics as an undergrad?
Lisa Boivin: I fell in love with the element of story—that ethics are held in the story of clinical narratives. As a bioethics student, we have all of this academic rhetoric around ethics. But I learned that the ethics are anchored in the story of the patient.
BLOOM: You mean that the most important ethics are found in a patient perspective?
Lisa Boivin: Yes. Clinical and personal hardship helped me to see ethics differently—things like informed consent. I had to read a lot of patient narratives to have a fundamental understanding of the sacred ceremony of informed consent. That’s both parties coming together with complete understanding of one another’s situation, and a balance in decision-making. And that’s something that’s hard to accomplish, for basic reasons. The patient isn’t a clinician, and doesn’t have the expertise that a doctor has in terms of the biology of what’s happening. But there’s also such a tremendous power imbalance between the two parties.
BLOOM: Can you describe your art?
Lisa Boivin: I came to know image-based storytelling through an inability to articulate academic thought from an Indigenous perspective. I’m not a classically-trained artist. I’ve only painted for three years. I’m a ‘60’s scoop survivor from two generations of residential school survivors.
One of my professors asked me to write a paper on colonialism. I couldn’t do it. So I painted it. The paintings are born out of necessity, and are a way to communicate Indigenous perspectives to non-Indigenous colleagues. The one featured above is called Holding Thunderbird.
BLOOM: Can you describe what it means?
Lisa Boivin: From my teachings, Thunderbird is a very powerful being, the carrier of knowledge and the conduit between the creator and the people. Thunderbird is also the carrier of justice. With that responsibility comes great frustration.
I don’t feel knowledgeable, I simply carry a knowledge that is unfolding in images I’m creating. I find myself frustrated often. Holding Thunderbird relates to me as a person who struggles in the academy, where I’m constantly expected to fit my Dene knowledge into a colonial format. That’s extremely oppressive and harmful to me.
There are times when bioscience research clashes with Indigenous research methodologies. This painting was created to thank a professor who was helpful to me at a residency. The woman holding Thunderbird is the professor and all the flowers represent her knowledge. She’s keeping Thunderbird from flying away, and comforting Thunderbird.
She’s the first person that’s never asked me to change or do anything that would be harmful to the Indigenous knowledge in the images. That residency provided me with a healing, and a security I had never known.
For me, the painting represents the notion that we all have our own knowledge and our own knowledge systems. And for us to grow, we need support from people who have power in our lives. It can be a professor, a clinician, or a leader in our community. But the idea is someone holding space for us, as we are.
BLOOM: This reminds me of how difficult it can be to talk about disability in a culture that doesn’t value it. It’s almost like I don’t have the words, sometimes, or I feel like I’m put on the defensive, in trying to convince people that there is value in a different way of living.
Lisa Boivin: This is the kind of damage that the medical model does to people with differences. What I’ve learned from my family is that an Indigenous perspective of wellness is much larger than the narrow perspective of the medical model. The medical model measures wellness as the absence of disease. From my Dene perspective, the measure of wellness is the ability to interact with the land.
My father had polio as an infant, and during his childhood he was seen as someone who was disabled. But when my father came home from residential school, he got on a dog sled. He became a champion dog racer and was no longer disabled. He didn’t consider himself disabled in any way. He just navigated the world differently.
I’m someone who has been diagnosed with a learning difference or cognitive disability. I have a different way of translating knowledge. I’m an image-based storyteller. There’s a reason I can’t interact with certain academic theories. The images came to life and were born out of necessity. If I could translate knowledge in an academic way, I would never have learned how to paint.
BLOOM: You spoke about your dad’s physical disability, and how through dog sledding, he was able. How do Indigenous people view intellectual disability or other types of disability?
Lisa Boivin: Any Indigenous person would want people to embrace who they are, or to create their own idea of wellness. My dad walked with a limp and had varying degrees of mobility, but that never affected his understanding of his wellness.
My wellness comes from an ability to interact with the land—to understand where I am in the world, and how I fit in and what my duties are. My duty is to be an image-based storyteller.
In the Navaho literature, they don’t present an idea of correcting behaviour. You are who you are, and you contribute where you can.
You move differently, you speak differently. The eight-year-old boy in me says: ‘You have a difference, you do different stuff.’
BLOOM: What do you hope to do in the future?
Lisa Boivin: I want to share information about Canada’s colonial history and how that creates clinical barriers between a clinician or therapist and a patient.
There are centuries of failed relationships between what would become Canadian institutions and Indigenous people. For hundreds of years, there’s broken promises, institutional racism and mistrust. And this still takes place in medicine today. I am horrified when I read stories in the media about Indigenous patients who die in ERs because they’re seen as drunk or drug-seeking. When an Indigenous patient sees that in a media story, it influences how they interact with a doctor.
Medicine has also been used as an instrument to remove Indigenous children from their homes, because it’s perceived that Indigenous parents can’t look after their children. This was certainly the case for my father, who had over a dozen surgeries to correct his mobility impairment.
I’d like to promote an understanding of a wider notion of wellness. As we spoke of earlier, the medical model is very simplistic. It’s the presence or absence of disease. There are wider models of wellness.
For many Indigenous people, the ability to interact with the land is a measure of wellness. An Indigenous worldview includes the land, animals, community and nature. An ability to contribute to community is central to wellness, and that can be any contribution.
I’m a health-care educator and I will continue using arts-based practice to educate about colonialism and how that exists in medicine.
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