Abstract
Racism is rooted in historic and ongoing colonial strategies designed to erase, silence and dismiss Indigenous peoples’ voices, personhood and worldview. Although within health care today interpersonal racism (discriminatory treatment) is commonly reported on, racism also influences our understanding of health conditions and related treatments. Epistemic racism, the discrimination of how we know, operates through the questions we ask to advance our evidence, and whose knowledge is sought and deemed valid. Epistemic racism is a colonial mechanism that marginalizes and diminishes the power of Indigenous peoples’ voices and knowledge bases. In this work, we begin by sharing 2 stories of Indigenous peoples and type 2 diabetes (T2D) from an Indigenous knowledge base and a biomedical knowledge base. Our discussion of epistemic racism, which underlies reported T2D health disparities among Indigenous peoples, includes providing examples of knowledge emerging when the dominance of the biomedical knowledge base is disrupted through centring Indigenous knowledge and peoples. Indigenous-led research, in respectful relations with biomedical worldviews, is imperative. Unsilencing Indigenous peoples’ voices and knowledge is necessary when addressing identified T2D health disparities and is truly a health priority. Indigenous revitalization, that is, acceptance of Indigenous knowledge bases, is valid and vital to health and well-being---it is time for ReconciliACTION.
Résumé
Le racisme est enraciné dans des stratégies historiques et coloniales persistantes conçues pour faire disparaître, faire taire et rejeter les voix des personnes autochtones, leur identité individuelle et leur vision du monde. Bien qu’aujourd’hui, dans les soins de santé, le racisme interpersonnel (traitement discriminatoire) soit fréquemment signalé, le racisme influence aussi notre compréhension de l’état de santé et des traitements associés. Le racisme épistémique, la discrimination sur ce que nous savons de l’état de santé, se manifeste par les questions que nous posons pour faire progresser nos données, et dont les connaissances sont recherchées et considérées comme valables. Le racisme épistémique est un mécanisme colonial qui marginalise et diminue le pouvoir des voix des personnes autochtones et de leurs bases de connaissances. Dans ces travaux, nous débutons par le partage de 2 récits sur les personnes autochtones et le diabète de type 2 (DT2) établis sur la base des connaissances autochtones et sur la base des connaissances biomédicales. Notre discussion sur le racisme épistémique, qui sous-tend les disparités signalées sur le plan de la santé en lien avec le DT2 au sein des personnes autochtones, s’accompagne d’exemples sur les connaissances qui émergent lorsque la dominance de la base des connaissances biomédicales est perturbée par l’intégration des connaissances et des personnes autochtones. La recherche dirigée par les Autochtones, dans le respect mutuel des visions biomédicales du monde, est essentielle. Il faut donner la parole aux personnes autochtones et lever le voile sur leurs connaissances si l’on veut remédier aux disparités signalées sur le plan de la santé en lien avec le DT2 et en faire une véritable priorité de santé. La revitalisation autochtone, autrement dit, l’acceptation des bases de connaissances autochtones, est valable et indispensable à la santé et au bien-être. Le temps est venu d’aboutir à la réconciliACTION.
Keywords
Mots clés
Key Messages
- •Disrupting epistemic racism is a step toward the reconciliation required to revise health-care strategies concerning type 2 diabetes (T2D) among Indigenous peoples.
- •By telling Indigenous and biomedical knowledge-based stories of T2D among Indigenous peoples, epistemic racism is revealed.
- •Indigenous peoples–led research, in respectful relations with biomedical worldviews, is imperative to address knowledge gaps concerning T2D.
Racism is rooted in historic and ongoing colonial strategies designed to erase, silence, and dismiss the voice, personhood, and worldview of Indigenous peoples (
1
,- Allan B.
- Smylie J.
First Peoples, second class treatment: The role of racism in the health and well-being of Indigenous peoples in Canada. 2015.
https://www.wellesleyinstitute.com/wp-content/uploads/2015/02/full-report-fpsct-updated.pdf
Date accessed: July 5, 2021
2
). Although the impact of over 400 years of colonial imposition has resulted in intergenerational physical, emotional, mental, and spiritual trauma that underlies reported health disparities, colonial strategies have not extinguished Indigenous peoples nor their knowledge systems (1
, - Allan B.
- Smylie J.
First Peoples, second class treatment: The role of racism in the health and well-being of Indigenous peoples in Canada. 2015.
https://www.wellesleyinstitute.com/wp-content/uploads/2015/02/full-report-fpsct-updated.pdf
Date accessed: July 5, 2021
2
, 3
, - Diffey L.
- Fontaine L.S.
- Schultz A.S.H.
Understanding First Nations women’s heart health. 2019.
https://www.nccih.ca/docs/emerging/rpt-womens-heart-health-diffey-fontaine-schultz-en.pdf
Date accessed: July 5, 2021
4
, 5
). For example, an Ojibway elder spoke of type 2 diabetes (T2D) as an out-of-balance disease, or Windigo, where societal structures split families and enforce new/alien education systems that marginalize and silenced traditional teachings (6
). Within health care, various forms of racism reside. Although this includes discriminatory treatment, such as that received by Brian Sinclair (7
), epistemic racism underlies the erasure of realities and shapes our collective sight. Epistemic racism operates at the level of our understanding of a health condition through the questions we ask to advance our evidence, and whose knowledge is sought or deemed valid. Thus, this leaves health-care practices, paternalistic attitudes, policies, and research that inherently rely solely on unchallenged biomedical worldviews and perpetuates colonial structures underlying the inadequate delivery of health care within culturally unsafe contexts (8
).In this study, epistemic racism is exposed through the telling of 2 stories of T2D among Indigenous peoples---stories that draw on an Indigenous knowledge base and a biomedical knowledge base. The coauthors of this work each have decades of health-care and research experience, and include a Nēhinan (Cree) health researcher and food sovereignty community practitioner (M.S.); a Métis physician, who has worked with Indigenous peoples diagnosed with T2D (B.L.); a Métis registered dietitian, who has worked in an urban Indigenous health setting (M.C.); and a Caucasian settler nurse scientist (A.S.). After sharing the stories, we present a thoughtful discussion of the racialized epistemologic context and resolutions. Disrupting epistemic racism is an act of reconciliation imperative to a (re)vision of T2D health-care strategies among Indigenous peoples.
Telling Stories of Indigenous Peoples and T2D
Stories rooted in Indigenous worldviews and knowledge are shared through the voice of Dr Moneca Sinclaire, which draw on her experiences from over 40 years of working with Indigenous elders, communities, and health-care practitioners across Turtle Island. As a community nutritionist, food sovereignty advocate, academic student and mentor, artist, educator, and health researcher, she has listened to hundreds of people tell their stories. These stories resonate with B.L. (Métis physician) and M.C. (Métis registered dietitian) and their experiences within health care. Moneca’s sharing of these stories brings life to the voices and relations, and, although echoes of academic literature are heard, the referent source of the stories is not in written words.
“Diabetes is not even a word in our language; it does not speak to us through our land nor does it give us hope,” is the type of phrase Moneca has heard uttered by many Indigenous peoples. Often, the story of diabetes is articulated to the public from a biomedical perspective, which continuously cites the staggering numbers and younger age of Indigenous peoples who are getting T2D. Diabetes, a disease Indigenous peoples did not experience until the 1960s, was not like the epidemics of smallpox or the common cold, where one could be treated with medicines; it is a disease that festers as progressively more stress is placed upon a person’s body. The stress of ongoing colonialism and this continued ideology of settler racial supremacy dehumanizes and continues to colonize the minds of not only Indigenous peoples but settler colonial peoples. Settlers, especially in the health field, may not be aware of their “unconscious” bias when they are treating Indigenous peoples; the most current example is that of Joyce Echaquan, who died knowing that she was receiving harmful care from health-care workers. The stories of colonialism continue and racism reforms itself with different narratives---rationalizations, such as Indigenous peoples are noncompliant, they want to live in abject poverty, they do not adhere to the policy, and so on. Many individuals and institutions do not wish to acknowledge their colonial or White supremacist or racist bias they have toward Indigenous peoples because it is “messy.”
When Indigenous peoples do talk about the disease of diabetes, they are, for me, telling stories of food sovereignty and, most importantly, the loss of their relationship with the land that was once able to feed them. In contrast, when biomedical health researchers tell the diabetes and Indigenous peoples’ story, they are inadvertently revealing the ongoing colonial experiment. They are illuminating what happens when colonialism is imposed on a group of people for centuries, and which affects health for generations. Colonialism, legalized through the Indian Act, influences federal and provincial public service programs, and endorses collective and individual unconscious bias, racism, and the refusal to understand that Indigenous peoples view health from a different perspective.
As I listen to the biomedical narrative, I wonder why stories that reflect the loss of relationships with the land, people, and animals are rarely mentioned? If unstated, they are seen as insignificant to the larger concern of skyrocketing numbers of our people with T2D. The continued assimilation by the dominant settler has resulted in a new “colonial wound” that continues to fester by chronic abject poverty, racism, and unresolved historic trauma, which continues to trouble Indigenous peoples’ minds and hearts from generation to generation. As I walk through the library searching for our voices in the written word in the stacks of journals and books, I do not see our worldviews being represented. I do not see research approaches rooted in Kovach’s conversational research (
9
), Wilson’s research as ceremony (10
), and Tuhiwai-Smith’s decolonizing research (11
). These Indigenous methodologies demand that Indigenous voices, stories, people, and ways of being are privileged in health research. I wonder when research will begin to not only address health calls to action from the Truth and Reconciliation Commission of Canada, but also incorporate Indigenous methodologies that demand Indigenous voices, stories, people, and ways of being be privileged and elevated to the same level as biomedical knowledge when making health-care decisions.Stories rooted in a biomedical worldview reflect a synthesis of relevant academic literature, which draws on written words appropriately cited
Indigenous peoples and T2D is a chronic disease story that began 50 years ago when T2D was almost unknown among Indigenous peoples (
5
,12
). Today, in Canada, Indigenous peoples are 3- to 5-fold more likely to live with a diagnosis of T2D, with higher rates noted among those living closer to urban centres; mounting biomedical evidence demonstrates a growing prevalence, younger age at diagnosis, higher disease rates among women, poorer disease management, and worse health outcomes when compared with the general population (5
,12
, 13
, 14
, 15
, 16
, 17
, 18
, Diabetes Canada
Diabetes 360: A framework for a diabetes strategy for Canada. 2018.
Diabetes 360: A framework for a diabetes strategy for Canada. 2018.
https://www.diabetes.ca/getmedia/a4d52b4c-85fa-4cf2-aa4d-e15103f16ec3/diabetes_360_recommendations_1.pdf.aspx
Date accessed: February 11, 2019
19
, 20
, 21
). The flourishing of biomedically derived evidence supports the framing of T2D primarily as a physiologic disease with a biomedical therapeutic solution (5
,22
,23
). Solutions focus on individuals, their bodies and behaviours, and how to support behavioural changes (or lifestyle choices), which supports blaming of individuals when treatment plans do not produce the intended results (21
,23
). During health-care appointments, maintaining or reducing glycated hemoglobin (A1C) levels is a focus. When treatment is ineffective regarding A1C levels, health-care practitioners commonly report experiences of frustration with patients’ inability to manage their health (i.e. blaming) or that there is a lack of resources; curiously, there seems to be minimal consideration beyond those 2 sources of failure (21
,23
). T2D interventions among Indigenous peoples focus on 1) changes in personal lifestyle choices (e.g. diet, tobacco use, food security, and physical activities) and 2) changes in health-care systems (e.g. primary health-care quality improvements and development of T2D registries and surveillance programs) (21
).One study addressed the role that nonprofit organizations, including Diabetes Canada, played in perpetuating a narrative that T2D is a result of genetics and “lifestyle choices” (
24
,25
), and in silencing Indigenous knowledge. Raphael and colleagues noted that T2D is commonly framed as being the responsibility of individuals. When inequities were briefly mentioned, no insight into the causes or solutions was offered; therefore, with no vision into how inequities could be addressed, the default commonly resides in the blaming or shaming of an individual for this difference. These findings resonate with our considerable experience over the last several decades of hearing similar sentiments within Indigenous community services and frustration with the ongoing marginalization of Indigenous voices and knowledge.Beckett and colleagues (
13
) listened to Indigenous peoples discuss experiences of inadequate and culturally unsafe services related to poorer T2D management, which echoes health-care practitioner experiences with treatment challenges (22
,26
,27
). Family caregivers’ experiences were focussed on 1) juggling between traditional health practices and Western medicine, which requires managing non-Indigenous expectations; 2) lack of accessible and culturally sensitive care, and T2D education; and 3) lack of supports for dealing with the emotional and cultural aspects of managing T2D (8
).Questions and Reflections
As you reflect on each story and accepted truths, notice your responses. Which one is most familiar? How are you able to hear the other, likely contrary story? For most health researchers, health-care practitioners, health-care decision-makers, postsecondary health-care students, and people in general, the second story is likely familiar and confirms long-held ways of understanding health. This example of the result of epistemic racism is upheld through the questions asked, along with whose perspectives and voices are listened to, which then shape our understanding and treatments of T2D among Indigenous peoples. To disrupt this dominance, there is a growing call for holistic health research (
12
,14
,17
,28
) that incorporates Indigenous knowledge and history. We agree, as Indigenous research methods that privilege Indigenous voices and knowledge will generate evidence to disrupt our reliance on biomedical views driving research, health-care professional undergraduate education, and health-care services.Disruptions of Epistemic Racism
Epistemic racism is a colonial mechanism that marginalizes and diminishes the power of Indigenous voices and knowledge bases. Biomedical perspectives driving questions asked within health research influence the legitimacy of whose voices are heard and how each voice is understood and becomes validated evidence (
29
,30
). For example, the “thrifty genotype hypothesis” focusses on racialized genetics to explain health disparities; Indigenous scholars challenge the hypothesis and suggest the environmental and sociopolitical contexts be investigated as factors shaping health disparities (Truth and Reconciliation Commission of Canada. Calls to action. 2015.
https://nctr.ca/assets/reports/calls_to_action_english2.pdf
Date accessed: February 11, 2019
31
). Indigenous peoples have been, and remain, not silent; resistance continues along with advocating against injustices and racism within health-care contexts---and yet, these voices are not always heard nor afforded the power to inform health-care services (7
).Globally, lower T2D rates are associated with Indigenous populations that have maintained traditional ways compared with those shaped by colonization, global economic, and social forces (
14
). Similarly, research from western Turtle Island and Aotearoa has shown that Indigenous communities with a stronger connection to their traditional languages also had lower rates of T2D (32
,33
). These findings are examples of research that ventured beyond lifestyle and genetic factors associated with T2D. In another study, health-care providers’ awareness of the impact of structural racism and historic and ongoing colonialism translated into a patient-centred practice intended to “meet patients where they were at,” rather than expecting treatment adherence (27
). Although colonial violence and the biomedical worldview influence health-care delivery, it is promising to read of health-care practitioners stepping away from patient blaming and incorporating personal reflexivity to inform practice decisions.Recommendations for T2D intervention studies to address Indigenous populations include 1) drawing attention to the historic and ongoing effects of colonialism on Indigenous peoples’ health; 2) breaking intergenerational cycles of disease to promote better health outcomes; 3) culturally based interventions grounded in social, cultural, and historic contexts of health services; and 4) interventions for practitioners to self-reflect on their role in upholding barriers (
28
). A review of community-based initiatives suggests the value of holistic health frameworks rooted in Indigenous perspectives and theories (34
); thus, we endorse a call for disrupting biomedical dominance within health-care systemic structures and cultivation of space for Indigenous voices, frameworks, and knowledge bases.Closing Remarks
ReconciliACTION and Indigenous revitalization are imperative for the acceptance of Indigenous knowledge bases as valid and vital to health and well-being, as documented by the Truth and Reconciliation Commission of Canada (
30
). To challenge biomedical worldview dominance, research governed by decolonizing and Indigenous methodologies is essential. Reclaiming and privileging Indigenous knowledge as a valid way of being/knowing (research) is only possible by following Indigenous protocols (Truth and Reconciliation Commission of Canada. Calls to action. 2015.
https://nctr.ca/assets/reports/calls_to_action_english2.pdf
Date accessed: February 11, 2019
9
, 10
, 11
). Issues of power will arise when the intention is to disrupt privileging of biomedical worldviews by creating spaces to elevate Indigenous worldviews as valid evidence to inform health care. Research that represents colonized peoples through a Western lens of understanding is inadequate and disrespectful (9
,11
). Indigenous-led research, in respectful relations with biomedical worldviews, is imperative to address knowledge gaps concerning T2D. Spaces in which epistemic racism is disrupted are places where evidence will emerge to improve health and health-care practices. Failing to consider historical contexts surrounding health-care, effectively erases our ability to see the impact of present-day colonization and leaving us collectively blind to colonial damage (6
). ReconciliACTION is the call to build our capacity to expose and disrupt epistemic racism and to develop sovereign-based approaches to address T2D among Indigenous peoples.Acknowledgments
This work was funded by the Canadian Institutes of Health Research–Institute of Indigenous People Health (Bridge Funding Grant 201904PJT).
Author Disclosures
Conflicts of interest: None.
Author Contributions
M.S. and A.S. took the lead with the first draft of this article, followed by consultations with B.L. and M.C. A.S. was responsible for revising the manuscript based on suggestions of the coauthors. All coauthors reviewed the submitted version and agreed to be accountable for the published version of this work.
References
- First Peoples, second class treatment: The role of racism in the health and well-being of Indigenous peoples in Canada. 2015.https://www.wellesleyinstitute.com/wp-content/uploads/2015/02/full-report-fpsct-updated.pdfDate accessed: July 5, 2021
- Historical and continued colonial impacts on heart health of Indigenous peoples in Canada: What’s reconciliation got to do with it?.Can J Cardiol Open. 2012; 3: S149-S164
- Understanding First Nations women’s heart health. 2019.https://www.nccih.ca/docs/emerging/rpt-womens-heart-health-diffey-fontaine-schultz-en.pdfDate accessed: July 5, 2021
- Introducing: Deconstructing diabetes.in: Leal Ferreira M. Chesley Lang G. Indigenous Peoples and Diabetes: Community Empowerment and Wellness. Carolina Academic Press, Durham, NC2006: 3-32
- The social determinants of cardiovascular disease: Time for a refocus on racism.Diversity Equity Health Care. 2013; 10: 139-142
- Politics of culture in urban Indigenous community-based diabetes programs.Am Indian Culture Res J. 2014; 38: 49-72
- Perry A Structures of Indifference: An Indigenous Life and Death in a Canadian City.University of Manitoba Press, Winnipeg2018
- Exploring the experiences of urban First Nations people living with or caring for someone with type 2 diabetes.Can J Diabetes. 2012; 36: 175-180
- Indigenous Methodologies: Characteristics, Conversations, and Contexts.2nd ed. University of Toronto Press, Toronto2021
- Research Is Ceremony: Indigenous Research Methods.Fernwood Publishing, Winnipeg2008
- Decolonizing Methodologies: Research and Indigenous Peoples.ZED Books, New York2021
- Understanding chronic disease and the role for traditional approaches in Aboriginal communities. 2011.
- A cross-sectional analysis of the relationship between diabetes and health access barriers in an urban First Nations population in Canada.BMJ Open. 2018; 8e018272
- Call to action: A new path for improving diabetes care for Indigenous peoples, a global review.Diabetes Res Clin Pract. 2017; 123: 120-133
- People under threat: Health outcomes and oppression.in: McGibbon E.A. Oppression: A Social Determinant of Health. Fernwood Publishing, Halifax2012: 32-44
- Type 2 diabetes in Indigenous populations: Quality of intervention research over 20 years.Prev Med. 2011; 52: 3-9
- An indigenous approach to diabetes research: Don't just tell us we're fat.Can J Diabetes. 2011; 35: 324-325
- Diabetes 360: A framework for a diabetes strategy for Canada. 2018.https://www.diabetes.ca/getmedia/a4d52b4c-85fa-4cf2-aa4d-e15103f16ec3/diabetes_360_recommendations_1.pdf.aspxDate accessed: February 11, 2019
- Best practice for the prevention and management of diabetes and obesity-related chronic disease among Indigenous peoples in Canada: A review.Can J Diabetes. 2016; 40: 216-225
- Diabetes prevalence, incidence and mortality in First Nations and other people in Ontario, 1995–2014: A population-based study using linked administrative data.CMAJ. 2020; 192: E129-E135
- Characteristics of Indigenous healing strategies in Canada: A scoping review.JBI Evid Synth. 2020; 18: 2512-2555
- Exploring Canadian physicians’ experiences with type 2 diabetes care for adult Indigenous patients.Can J Diabetes. 2018; 42: 281-288
- Anti-racist Health Care Practice.Canadian Scholars’ Press, Toronto2009
- The global diabetes epidemic and the nonprofit state corporate complex: Equity implications of discourses, research agendas, and policy recommendations of diabetes nonprofit organizations.Social Sci Med. 2019; 223: 77-88
- The cultural hegemony of chronic disease association discourse in Canada.Soc Theory Health. 2019; 17: 172-191
- Providers’ perceptions of barriers to the management of type 2 diabetes in remote Aboriginal settings.Int J Circumpolar Health. 2011; 70: 552-563
- Challenges to the provision of diabetes care in First Nations communities: Results from a national survey of healthcare providers in Canada.BMC Health Serv Res. 2011; 11: 283
- The Prevalence of Type 2 Diabetes Among First Nations and Considerations for Prevention.National Collaborating Centre for Aboriginal Health, Prince George, BC2019
- White Fragility: Why It’s So Hard for White People to Talk About Racism.Beacon Hill Press, Boston2018
- Truth and Reconciliation Commission of Canada. Calls to action. 2015.https://nctr.ca/assets/reports/calls_to_action_english2.pdfDate accessed: February 11, 2019
- Racialized genetics and the study of complex disease: The thrifty genotype revisited.Perspect Biol Med. 2014; 50: 203-227
- Cultural continuity, traditional Indigenous language, and diabetes in Alberta First Nations: A mixed methods study.Int J Equity Health. 2014; 13: 92
- What protects against pre-diabetes progressing to diabetes? Observational study of integrated health and social data.Diabetes Res Clin Pract. 2019; 148: 119-129
- Discovering the literature on Aboriginal diabetes in Canada: A focus on holistic methodologies.Can J Nurs Res. 2008; 40: 26-54
Article info
Publication history
Published online: February 02, 2023
Accepted:
January 25,
2023
Received in revised form:
December 21,
2022
Received:
October 7,
2022
Publication stage
In Press Journal Pre-ProofIdentification
Copyright
© 2023 Canadian Diabetes Association.
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