Toward a Story Powerful Enough to Reduce Health Inequities in Indian Country

Health Inequalities in Indian Country: The Case of Diabetes Mellitus

A health inequality arises when the difference in health is avoidable, unjust, unfair, and inequitable (Braveman, 2006). Therefore, health inequalities occur when social disadvantages systematically reduce the health of a particular population, or when individuals or populations do not experience the best potential health when controlling for age and medical care (Adler, 2006). In this article, I focus specifically on health inequity in Indian Country. Like LaFrance (2004), I use the term Indian Country to describe “the collection of tribal nations and Alaskan native communities that occupy a shared homeland and live in culturally bounded communities” (p. 39). The well-known, widely publicized, and disheartening statistics from Indian Country demonstrate wide health inequalities that continue to widen. Alcoholism, depression, and diabetes are the most threatening and tormenting biomedical diseases in Indian Country (de Cora, 2001). I focus on the case of type 2 diabetes mellitus. American Indians/Alaska Natives (AI/AN) are 2.3 times more likely to have a diagnosis of diabetes than the rest of the U.S. population. In Indian Country, the diabetes rate is 16.1%, whereas it is only 8.3% for the rest of the U.S. population. AI/AN with diabetes have higher hospitalization rates, higher Emergency Department usage, more behavioral health visits, and cost the health care system more than the rest of the U.S. population with diabetes (O’Connell, Wilson, Manson, & Acton, 2012). In addition, mortality rates are 3 to 4 times higher than the rest of the U.S. population. Amputations, kidney failure, heart disease, depression, alcoholism, blindness, impaired circulation, coma, higher susceptibility to infection, and poor wound healing interweave into narratives about diabetes in Indian Country (de Cora, 2001; Olson, 1999; Tripp-Reimer, Choi, Kelley, & Enslein, 2001). Despite lived experiences of these challenging complications, diabetes rates continue to rise in Indian Country. On some reservations, more than half up to 80% of the adult population have diabetes. Diabetes rates are growing most rapidly in the under 30, under 20, and under 16 age groups (Olson, 1999). The predominance of diabetes is a phenomenon of the last 30 years.

“[Diabetes] is not just a disease of the body; it is a problem which needs to be understood within the context of Native history, culture, and experience” (p. 185), writes Olson (1999). Smith-Morris (2004) lays out three domains at play in the epidemiology and illness history of diabetes in Indian Country: political–economic, genetic, and cultural. Political–economic factors in the epidemiology and illness history of diabetes include poverty and unemployment (Smith-Morris, 2004). Smith-Morris argues that genetics are an overemphasized factor, “contributing to a sense that this disease is inevitable in American Indian populations.” Sanderson et al. (2012) in her research with American Indian elders’ understandings of diabetes causation reflects what Smith-Morris discusses. I examine each factor in more detail as they provide an important context for the diabetes wellness programs I later analyze. A clear understanding of causation is critical to effective healing.

Political–economic factors arise primarily from the decline of farming and the shift from eating subsistence foods (beans, squash, and maize) to U.S. government commodity foods (flour, sugar, eggs, cheese, cereal, canned meat) during the Great Depression. Farming also necessitated vigorous, cardiovascular, physical activity, which a sedentary lifestyle has replaced. Smith-Morris (2004) found with the Pima Indians at Gila River that exercise just for exercise, for the health benefit, is not a culturally congruent concept. Smith-Morris argues that food culture on reservations has changed such that reintroduction of traditional, slow foods would face resistance from those who no longer see the connection between food source and food consumption. Fry bread has replaced beans as a culturally significant food. Thus, pathological food ways contribute to diabetes in Indian Country. Re-visioning and re-establishing traditional food ways are common elements of diabetes interventions.

Much debate and contention surrounds genetic factors related to high rates of diabetes in Indian Country. Research as early as the 1960s argued for the “thrifty gene” that changed fat and glucose metabolism in such a way that excess insulin remained. The pre-contact lifestyle of AI/AN created the “thrifty gene.” “[Neel] used this model to explain why excessive caloric intake, and rapid as well as elevated insulin secretion had enabled these populations of hunter-gatherers to survive sporadic food availability under feast or famine conditions” (King, 2015, p. 2). More recent explanations for the genetics of diabetes in Indian Country seek to debunk the thrifty gene and focus more on environmental factors, particularly in utero environment—an epigenetics approach (Conti, 2006; Poudrier, 2007). For example, mothers with gestational diabetes tend to have children with diabetes (Smith-Morris, 2004), and the use of lactose, introduced with contact, contributed to poor insulin regulation and subsequent diabetes (King, 2015).

Smith-Morris (2004), when she discusses cultural factors behind the diabetes epidemic, focuses on contemporary attitudes toward disease prevention and personal autonomy. Terming diabetes, alcoholism, and obesity “White man’s diseases” not only brings a traumatic history of cultural genocide into the conversation but also shifts responsibility both for the diseases’ causes and solutions onto an external other (Smith-Morris, 2004). Sanderson et al. (2012) reminds that until the 1970s, American Indians were supposed to assimilate and disappear, solving the “Indian Problem.” As shown later in the themes that emerge from the diabetes interventions, negotiations between biomedical instructions for health and traditional knowledge occur at every moment in the progression of diabetes. Resistance to the White man who caused the diabetes often takes the form of unhealthy behaviors. For example, hospitality in Indian Country demands that plentiful food, in particular rich fried and sweet foods, be offered. Maintaining kinship networks through hospitality outweighs problematized body size. Like other minorities in the United States, body image has shifted in Indian Country. Thinness reflects a failure to thrive, starvation, insufficient resources, and/or a poor family and community network of care. Fatness denotes intact networks of care, middle-class living conditions, sexual desirability, and thriving (Olson, 1999; Poudrier & Kennedy, 2008; Smith-Morris, 2004).

Indigenous Modes of Health and Wellness

In this section, I discuss Indigenous modes of health and wellness, which provide a context for my assessments of diabetes wellness programs in Indian Country. As Simpson and Smith (2014) write, “Epistemologies have material consequences . . . bodily and ecological consequences” (pp. 4, 6). I focus on how ways of knowing become wellness practices in the three themes I discuss. I frame Indigenous modes of health and wellness in terms of care. Indigenous epistemologies understand health and wellness as necessitating ecological relationships of care between self, land, animals, waterways, plants, communities, ancestors, and future generations. Smylie et al. (2004) assert, “Methods of Indigenous knowledge generation and application are participatory, communal and experiential, and reflective of local geography” (p. 141). I begin with care for the land, then describe care for self and community, and finally move beyond physically present actors to talk about care for ancestors and future generations. LaFrance (2004) asserts that “respect, reciprocity, and relationship” (p. 43) underlie the ecology created by these care relationships. In this section, I honor the periphery’s, the Indigenous, desire both to dialogue with and keep secrets from the center (Butler-McIlwraith, 2006). It is critical to note that much of the toxicity and trauma from colonization occurs through prevention of the following care relationships, while the richness of invoking Indigenous knowledge to eliminate health inequities arises from re-establishing the following care relationships.

At the center of what it means to be Indigenous is a connection to place and care for the land, including animals, waterways, and plants (Conti, 2006). The land nourishes, creates, sustains, and protects Indigenous peoples. Freund (2001) embodies care for the land by recognizing that bodies occupy a particular space and time context. He argues, “The fundamental starting point of the social model . . . is not the individual body, but structural elements that organise space, time and motion” (Freund, 2001, p. 702). Goeman (2014) moves the point that Freund makes into an Indigenous context: “The classification of ‘Indian’ has everything to do with spatial occupation of land and bodies” (p. 236). Indigenous peoples remain tied to land for food and spirituality; yet the space of Indian Country, delimited by reservations and encroached upon by federal laws and national parks, prevents the realization of full care for the land necessary for wellness throughout Indian Country. “Keeping a connection to the land by hunting, fishing, gathering, planting, drying, and preparing traditional foods will strengthen the people and sustain food traditions into the next generation” (Conti, 2006, p. 245). Yet maintaining that connection must also heed Goeman’s concern regarding the “nostalgic past . . . represented with images and words of stagnant purity and authenticity [that] constrain[s] people in places and in bodies that are marked and unmarked in ways that make them legible or illegible as Indigenous peoples” (p. 236).

Care for self intertwines with care for community. Barbara Mora, a Paiute/Dine woman diagnosed with diabetes, speaks profoundly about this in Mora (2013), a primary health education tool from Indian Health Service’s (IHS) Special Diabetes Program for Indians. In a later section, I discuss her shift from giving completely of herself to others to taking time for activities that improve her wellness. The shift preserves her spirit and energy for a longer life of service. Poudrier and Kennedy (2008) find a similar concern, gendered as well, in their study of body image and embodiment with native women. They write:

Since they had all had partners and children to take care of when they were younger (sometimes at a very young age), the women felt that they had mistakenly neglected their own health needs while focusing on the needs of others . . . She knew that she could not care for others if she was sick. (p. 14)

Care for self, in particular for native women, ensures sustained and healthy care for the community.

Care expands beyond the physically present actors at a particular time to include ancestors and future generations. Rifkin (2014) cautions that care should not extend too far into nostalgia for kinship because that means that “Indigenous peoples can be narrated as a population defined by reproductively transmitted Indianness” (p. 152). Resilience descends from ancestors along with the wisdom about wellness (Conti, 2006). In return for this knowledge, wisdom, and resilience, ancestors require care. LaFrance (2004) describes the fundamental value of care for ancestors: “Elder teaching is based on a democratic value of give and take, equality, and participation” (p. 43). The ancestors lived through stories of injustice, stories of survival, false promises, and broken treaties. Nevertheless, as Mora (2013) describes, the ancestors knew how to fight with “bold, brave blood” (p. 20). Care for future generations often requires sacrifice. In the particular case of diabetes, this might mean following biomedical recommendations for self-care and treatment to be alive for grandchildren. At the same time, the grandmother with diabetes models to her grandchildren a dialogue between biomedical treatment that will keep her alive and traditional spirituality that will keep her well. Lorelei DeCora, leader of Diabetes Talking Circles Wellness Program, reminds, “As our ancestors looked out for us, we need to look out for our children and grandchildren. I want our people to have good lives” (Seva Foundation, 2013).

What Stories Are at Play?

In this article, I analyze three collections of diabetes prevention and wellness programs. I call upon the online resources regarding the programs as that format allows me to track the programs across multiple webpages with unique audiences. In addition, websites are more accessible to community members with diabetes than are academic journal articles, although I do incorporate a few since they provide analysis, synthesis, and evaluation rarely available on the websites. The three collections of programs are (a) CDC’s Native Diabetes Wellness Program (http://www.cdc.gov/diabetes/projects/diabetes-wellness.htm), (b) National Library of Medicine (NLM) webpage (http://americanindianhealth.nlm.nih.gov/diabetes.html) dedicated to diabetes as an American Indian health topic, and (c) IHS’s Special Diabetes Program for Indians (http://www.ihs.gov/MedicalPrograms/Diabetes/index.cfm?module=programsSDPI). I focus, in particular, on the stories told within the websites because, as Million (2014) asserts, “Story has always been practice, strategic, and restorative. Story is Indigenous theory” (p. 35).

Selection Criteria

The three programs selected above are some of the top Google hits. Therefore, they represent what those with diabetes would find on a search for resources regarding diabetes in Indian Country. Even low health literacy, less-educated, rural dwelling, and older people who seek out the Internet, for example, at libraries, would stumble across these websites as they forage for information on diabetes and what is being done about it. Less critical to the purposes of this article’s analyses, they are also websites that health care providers will refer to since they are from well-respected, large national institutions. The websites themselves are difficult to navigate. I dig deeply into the websites, like a purpose-driven health care provider might. Those seeking out diabetes resources might not follow as many links.

The home page of the CDC’s Native Diabetes Wellness Program lays out mission and vision with quick links to goals and principles. The goals of the Native Diabetes Wellness Program are to (a) support sustainable, valuable ecological approaches to promote the use of traditional foods, physical activity, social support, and health policy change in communities; (b) share messages, including stories and art, about survival and traditional ways of health that are remembered, retold, and talked about in homes, schools, and communities; (c) share and evaluate Native and Western programs, including community outreach, talking circles, community-based interventions, and diabetes education in schools with native students; and (d) support meaningful tribal consultation at the state and federal levels. The Native Diabetes Wellness Program strives to follow these principles: (a) consult tribal leadership and tribal members, (b) honor federal responsibility to tribal nations, (c) respect and incorporate Native science, (d) share a vision of hope, (e) honor storytelling and the power of stories, (f) establish direct relationships with tribal nations, (g) respect the power of words—keep our word, (h) seek reciprocity and balance, (i) be grateful for our work, (j) reflect critically and deeply, (k) be accountable for our actions, and (l) assure that the people own the stories. The primary product from the Native Diabetes Wellness Program is the Eagle Books–illustrated children and young adult storybooks that use traditional native stories to teach about wellness. The program focuses on diabetes prevention in schools and in communities through reintroducing traditional foods such as squash, beans, and maize.

The NLM (n.d.) hosts webpages on American Indian Health as, quoting the webpage itself, “an information portal to issues affecting the health and well-being of American Indians.” Under health topics is a webpage dedicated to diabetes-related link organized by “our health” with links to federal diabetes education programs at IHS, National Institutes of Health (NIH), Food and Drug Administration (FDA), and U.S. Department of Health and Human Services (HHS), “our stories” with wisdom of the elders’ stories plus culturally tailored and community-based interventions, “for researchers, health professionals, and educators” with links to resources and tools at PUBMED, IHS, CDC, and HHS, “organizations and programs” with funding sources and links to the other programs assessed in this article, and “health information about diabetes for everyone” with information about complications from diabetes and diabetes in other minority populations.

The IHS’s Special Diabetes Program for Indians introduces itself as Congress’ response to the AI/AN diabetes epidemic. The program began in 1997 with a US$150 million annual budget to fund 404 Urban, Tribal, and IHS diabetes prevention and wellness programs. Conti (2006) writes about the Special Diabetes Program, “In recent years, tribes have been engaging in diabetes- and obesity-prevention efforts through some 318 new diabetes-prevention programs across Indian Country” (p. 234). King (2015) also reiterates the program’s mission:

The Indian Health Service Diabetes Program believes that Type 2 Diabetes can be effectively treated and possibly even prevented by appropriate lifestyle modifications. The Program lists the four causes for diabetes as follows: genetic tendency, inactivity, obesity, and a diet high in sugar. (p. 11)

Sanderson et al. 2012 give voice to elders about diabetes causation, demonstrating that these four causes of diabetes according to the IHS program are not the causes that those with diabetes themselves or others in their families attest to. Oster, Grier, Lightning, Mayan, and Toth (2014) also asked elders about diabetes causation and write, “The loss of culture often was seen as the root cause, and reconnecting with traditional culture was seen as the solution” (p. 4). The main webpage links to eight brief descriptions about: programs, projects, initiatives, reports, facts, inspiration, and best practices. The user may choose to click “Learn More” or “More Information” on any of the descriptions. They are then re-directed to a more extensive webpage.

Buried deep in the IHS.gov website are books and podcasts by Barbara Mora (2013), a Paiute/Dine woman diagnosed with diabetes, titled Using Our Wit and Wisdom to Live Well With Diabetes. The books and podcasts track Barbara’s journey from dark days and depression to the liberation of a life well-lived with diabetes. I focus my evaluation to determine themes on Barbara Mora’s story, heeding Sanderson et al. (2012)’s urge that “giving voice to the very people affected by this disease is critical to develop a culturally relevant solution” (p. 57). Barbara’s is the only voice of someone affected by this disease available on any of the three websites.

Author Positionality

Smith (2014) writes, “Western writers are granted rhetorical agency, analysis and theory–the ability to tell truths that are not contained in their bodies” (p. 210). I do not have diabetes. My mother in law did die of diabetes complications. Nevertheless, I can never have the embodied understanding of Indigenous persons with diabetes. I grew up atop a drumlin in the glaciated prairie land of Wisconsin. Five miles from my house, the mounds of the Aztalan settlement rise up from the earth. I played as a child in a circular virgin prairie, imagining American Indian women in buckskins and moccasins dancing with me. I am White, German, Swiss, English, and Dutch. Through my paternal grandmother, I have relatives who were settlers before the American Revolution. The spirits that dance with me, though, understand so much more than the White privilege in which I was brought up.

Given the nature of my academic training in medicine, sociology, and American Indian studies and my position as an ally, I can not only bridge dichotomies that contribute to health inequities persistence but also build mutually beneficial relationships. Joy Harjo once told me, “People who cross boundaries become dangerous, because they exist in the dangerous in-between spaces.” Being dangerous means one has been wounded and is capable of wounding. In another wrinkle of the rug, something wounded my soul. I wander into interstices, trying to heal. As Paolo Friere (1998) writes:

I search . . . because I question, and because I submit myself to questioning. I research because I notice things, take cognizance of them. And in so doing, I intervene. And intervening, I educate and educate myself. I do research so as to know what I do not yet know and to communicate and proclaim what I discover. (p. 35)

Qualitative Inquiry for the Stories at Play

I analyzed the three diabetes wellness programs through simultaneous deductive and inductive coding, following Fereday and Muir-Cochrane (2008). With the first assessment of the programs, I identified main points that stood out after reading through the program’s webpages. I then compared main points across the programs and narrowed to three themes through a process of reading and re-reading. Boyatzis (1998) provides the following definition of a theme: “a pattern in the information that at minimum describes and organises the possible observations and at maximum interprets aspects of the phenomenon” (p. 161). What themes kept standing out in all three programs? How were the themes that stood out markedly different from themes that failed to stand out? I answered these questions with qualitative rigor like in Fereday and Muir-Cochrane (2008) and not with the quantitatively biased rigor of content analysis. Throughout thematic analysis, theory drove my selection of themes. The theory I described in the preceding literature review on health inequity and Indigenous modes of health and wellness guided my decision about whether particular themes were innovative enough to decrease the devastation of diabetes in Indian Country. After narrowing to the three themes described in what follows, I went back to the programs’ webpages for details supporting the innovative nature of the themes and to identify who tells and who hears the stories about diabetes wellness in Indian Country. At this point, I also identified possible explanations for why the diabetes rate in Indian Country is not decreasing, despite diabetes wellness programs that successfully implement innovations for wellness. Again, theory and previous literature assisted as I made a differential diagnosis, meaning that I systematically review each possible explanation from most likely to least likely with plans for how to eliminate explanations. Ultimately, I share a goal with Sanderson et al. (2012) who articulated that “these narratives and themes can be used to guide the practice of non-indigenous health care providers working with indigenous people” (p. 57).

Who Tells the Stories? Who Hears the Stories?

To assess who tells the stories, I primarily use the NLM website on diabetes. This website provides links to the other programs I assess and therefore serves as the broadest overview. The primary voices are anonymous, the writers of the CDC, HHS, FDA, IHS, and NIH webpages. These voices, however, do not tell stories about interventions. They merely redirect to the voices telling stories. Elders are the predominant voice. The elders speaking represent a wide range of tribes, although they come predominantly from tribes with the greatest diabetes burden and rarely from urban places where the majority of the AI/AN population now live. The elders suffer from diabetes, have family members who suffer from diabetes, serve as diabetes educators for their communities, and exhibit healthy and culturally consistent lifestyles. Those suffering from diabetes who are not elders also tell some of the stories. Younger adults with a family history of diabetes confronting their risk for diabetes and desiring to live a well life tell some of the stories. Tribal diabetes educators and coordinators provide the only more biomedical-oriented voice. I note the absence of health care provider voices in storytelling, although such voices create the knowledge conveyed on general fact sheets and intervention recommendations. Health care providers do not follow the storytelling principles that make the stories from elders and others innovative and powerful. Biomedical knowledge requires transformation into these storytelling voices before it will affect change. Million (2014) summarizes why even these web-based narratives are important:

Narratives seek inclusion . . . Narratives lay boundaries . . . Narratives are our desire to link one paradigmatic will to knowledge to discursive and material projects that have consequences. Narratives serve the same function as any theory, in that they are practical vision. (p. 35)

A related question to who tells the stories regards who listens to the stories or who serves as the audience of the stories. The listeners are health care providers, regarding the cultural competence of their provider–patient relationship and the lived experience of diabetes in individuals, families, and communities. This shifting of who talks and who listens marks a profound recognition of the CDC’s Native Diabetes Wellness Program’s goal: “share messages, including stories and art, about survival and traditional ways of health that are remembered, retold, and talked about in homes, schools, and communities.”

The stories also contain many non-human actors, including limbs, glucometers, medication, insulin, sage, sweating, eyes, and eyesight, and animals. The CDC’s Native Diabetes Wellness Programs’ first goal is to “support sustainable, valuable ecological approaches to promote the use of traditional foods, physical activity, social support, and health policy change in communities.” A truly ecological approach incorporates non-human and animal actors. Recognition initiates their incorporation. Many of the stories incorporate the non-human and animal actors further through blessings. The glucometer is smudged. Medications and insulin sit on an east-facing altar. Prayer occurs before blood sugar testing or other lifestyle interventions.

I now describe three themes that arise from my analysis of the websites for three diabetes wellness programs. Theme 1 is taking control and community power, which refers back to the care of self and community that I talked about in Indigenous modes of health and wellness. Theme 2 is traditional foods and healing gardens. Care for the land and an understanding of the political–economic constraints on life in Indian Country underlie this theme. Theme 3 is play and leisure, which most strongly links back to the research question, “What role can vision and innovation play in either re-structuring existing stories or co-creating new stories to have more decolonizing power thus reducing the devastation of diabetes?” Finally, I identify reasons why even the most innovative programs that align with these three themes are not reducing health inequity. I conclude with a demonstration of how this article begins to perform a successful knowledge translation.

Theme 1: Taking Control and Community Power

A prevalent yet problematic story about diabetes in Indian Country concerns futurelessness. Diabetes is familiar, lurking in nearly every family, taking limbs, kidneys, and eyesight. “The only examples my mother knew of how people lived with diabetes were bleak: people with amputations, blindness and on dialysis” (Mora, 2013, p. 28). A new diagnosis of diabetes comes with silent acceptance. The diabetes lingers in an invisible space in a silent story until the one with diabetes begins to lose limbs, kidneys, and eyesight. Fear and shame motivate the invisible and silent story. The one with diabetes has a “death sentence” from the White man’s disease (Mora, 2013, p. 15). “The legacy of displacement” and the embodiment of trauma have entered their life (de Cora, 2001, p. 13). Silence is a way to disembody to counteract the embodiment of trauma. Freund (2001) reminds, “Even for those with a stable impairment, relationships between bodies, selves and environment are not as neat and unambiguous as the social model suggests” (p. 690). The one with diabetes alienates him or herself from the community space, which results in an alienation from their body, then from their mind, their self, and their identity. “I am impaired” or “I am silently a diabetic” become the only grasps for a true identity with sometimes tragic mental health consequences (Freund, 2001). As Mr. Bob Lomadafkie, an elder interviewed in Sanderson et al. (2012), comments, “The person diagnosed with diabetes is there for their family to offer strength and foundation for current and future generations” (p. 63). Caring for or protecting one’s family and community motivates the silence. A diabetes diagnosis ruptures relationships throughout the family. Silence prevents the rupture.

A diabetes data coordinator explains in praise of Mora (2013): “Indian people are often in denial about having diabetes, are afraid to face the truth, and afraid to explain our feelings. Barbara tells the truth about having diabetes. She understands the emotions and helps us understand.” Bachar et al. (2006) recognizes the need for visibility in their assessment of an Eastern Band of Cherokee diabetes prevention program:

To reverse this attitude, diabetes had to be brought to the forefront of the community. There had to be visual messages, mechanisms of emotional and educational support, and an approach that would create community coalitions with a single vision of making people healthier. (p. 3)

In this way, truth telling emerges, surfacing the conflict between taking control and selling out. Barbara Mora negotiated this conflict. For months, she lived in silent depression—dark days—thinking she was protecting her family. Then, Barbara watched an elder testing her blood sugar in the open, unashamed. The elder blessed her glucometer, pricked her finger, blessed the blood, and blessed the result. She prayed through the process instead of pulling away from the process. Barbara began to think of herself as a truth-telling “strong warrior woman” (Mora, 2013) against the current enemy of diabetes. “I started viewing it as a sacrifice,” Mora (2013) writes, “like the Sun Dance. I make the sacrifice of my blood on a test strip to have my prayer of good health answered. I suffer the pain, like the piercing of flesh, to sacrifice for myself and for my people” (p. 45). Barbara smudges her glucometer and offers a prayer before every test. Her story of taking control, therefore, remembers the ecological relationships between self and the entire community, between the Creator, Mother Earth, and animal friends. Caring for diabetes in the minute, mundane details becomes a way of enacting care for land, self, community, ancestors, and future generations. In this way, not only does an individual begin to live well but also an entire ecosystem heals.

Theme 2: Traditional Foods and Healing Gardens

For Indian ancestors, food was physical and spiritual medicine. (de Cora, 2001, p. 14)

Traditional foods and healing gardens relate both to how communities conceptualize the cause of diabetes and how they seek to reverse the causation as a healing method for their community. Oster et al. (2014) reflect on the transition in their article on diabetes causation:

The autonomy and ensuing self-sufficiency of the past has been lost and denied as Nations were forced to transition from a “nomadic life of freedom” that naturally led to “health and wellness,” to Nations that are controlled by and dependent on the dominant, conquering, and colonizing society’s government. (p. 5)

Food rations for AI/AN living on reservations began in the late 19th century. In the 1950s, the program providing food in Indian Country was renamed the commodities program. Food provided included cheese, lard, sugar, flour, cereal, canned meat, and canned fruit—high calorie, high sodium, and high sugar staples to ward off starvation. Commodity food was convenient and cheap and fit the changing relationship of native people to space as part of colonization. U.S. Department of Housing and Urban Development (HUD) houses restructured native people’s built environment and lessened physical activity (de Cora, 2001). Diabetes prevention and wellness programs note the role of reservations, commodity foods, and HUD houses in the emergence of the diabetes epidemic. They also describe acculturation’s role in the epidemic. Acculturation is a word with harmful consequences, an off-limits word, yet acculturation leads to stress, and physiologically stress causes cells to become insulin resistant, predisposing to diabetes especially with sustained stress and therefore increased insulin resistance (Olson, 1999). Another elder, Ms. Maria Marina Vasquez, interviewed in Sanderson et al. (2012), writes of the relationship between food and diabetes causation:

After many generations of Mayan people eating refined foods introduced by Europeans, the belief is that many Mayans are diagnosed with diabetes that result from genetic defects, accidents, or psychological trauma. Presently, many Mayan people are diagnosed with type 2 diabetes due to their modern-day lifestyles. This disease contributes to historical trauma that Mayan people experience from forced assimilation to European lifestyle. (p. 64)

What constitutes traditional food has shifted from beans to fry bread, from maize to Indian tacos, and from squash to cakes. Olson (1999) recognizes this shift and therefore suggests that “members of the community define what is meant by traditional food, and then incorporate these emic definitions into program designs” (p. 190). This approach empowers the community to raise awareness about contemporary traditional foods that in fact represent selling out to colonial powers. Tripp-Reimer et al. (2001) classify foods as strong versus filler foods, emphasizing strong foods for living well with diabetes. In addition, wellness programs embracing traditional foods teach about the history of food not only of the shifts over time in the tribe’s diet but also of everyday food’s origins (Conti, 2006). This allows a spiritual connection to the land to re-form to care for the land in ways colonial structures prevent. “Farmers, hunters, fishing peoples, and others throughout the world have defined food sovereignty,” writes Conti (2006), “as the rights of all peoples to define how they will hunt, grow, gather, sell or give away their food with respect to their own cultures and own systems of management of natural resources” (p. 234). Initiatives for traditional foods and healing gardens in Indian Country center on a re-visioned Medicine Wheel with water, animals with legs and fins, gathered plants, and cultivated crops as the four directions (Conti, 2006). Therefore, initiatives for wellness include “restoring buffalo herds back to tribal lands, planting gardens consisting of traditional foods, increasing water-quality standards, establishing game reserves, teaching traditional ways of preparing meats and vegetables, and re-assuming/claiming traditional lands to put into food production” (Conti, 2006, p. 235). The most significant barriers are cost and motivation.

Theme 3: Play and Leisure

Play and leisure refer to both productive and destructive stories about diabetes just as taking control dealt with futurelessness and truth-telling and traditional foods concerned land, plant, and animal loss and re-visioning traditional foods. As discussed in Theme 1, Barbara Mora kept her diagnosis of diabetes silent to protect her family. Telling the story of her diabetes outside of her family might play with her family’s reputation. When she did tell her story in broader circles, others began playing with Barbara’s cake intake. The cake pushers told Barbara she should enjoy the occasion and celebrate by eating cake. The cake teasers offered Barbara cake but took the cake away at the last minute with chastisement that she should not eat cake as a diabetic. The cake police refused Barbara even a small taste of cake. Hokowhitu (2009) argues that play is contradictory, a refusal, and an assertion of bodily sovereignty. He writes:

The notion of play is important to understanding the immediacy of the Indigenous body . . . It acknowledges at least the existential possibility of freedom beyond disciplinary constraint . . . That Indigenous people, for instance, have the existential wherewithal to be free. (pp. 1115-1116)

The paternalism of those playing with Barbara’s cake prevented her own ability to play. Duran, Firehammer, and Gonzalez (2008) assert that a gentle yet critical gaze inward is liberating. Barbara began to see with such a gaze to liberate herself to live well. She uses the metaphor of a caterpillar in a cocoon to describe her dark days, when those playing with her cake prevented her wellness. Barbara begins to realize: “‘Barbara! You can’t go out and play until your chores are done!’ Walking was play. When everything was hunky-dory . . . I could go walking” (Mora, 2013, p. 67). The tasks of wellness when managing diabetes each day are play. Yet Barbara learns to love herself better into wellness through saying no, taking naps, and walking every day. A participant in Oster et al. (2014) also reflects on the cocoon limiting play that enacts wellness:

There’s so much at play with the dominant society . . . and people are constantly in the midst of the dominant society . . . Our communities have become disrupted. Our medicines have been destroyed . . . We don’t have the capacity to go in the bush. We don’t have water to go fishing, to go hunting and gathering . . . We’re like a jail here. (p. 7)

A new Barbara emerges from the cocoon. On her walks, Barbara enjoys seeing sacred places again with a new sight, because now she approaches the places slowly and without burden:

When we get diabetes, we also get a whole new body. We become a new person. But there is no right-of-passage, no ceremony. There is no relieving of duties. There is no recognition of how years of grief and devotion and putting our needs last may have led to diabetes. (Mora, 2013, p. 58)

Play allows her emergence from the cocoon of darkness, worry, and depression. “Seeking care when not functionally impaired may be viewed as a self-indulgent luxury” (Tripp-Reimer et al., 2001, p. 16). Living well is also a luxury, but one that Barbara embraces for her own self-care and that of her community. “All of the more senior women in the group suggested that their own experiences of overlooking self-care until later in their lives might be a valuable teaching for younger women” (Poudrier & Kennedy, 2008, p. 19). Warriors simultaneously play and have purpose, care for themselves and care for the community. Only the warrior who understands play and embraces the liberation of play can stop diabetes from feeding upon communities (Seva Foundation, 2013).

Differential Diagnosis

In summation, the three potentially innovative themes uncovered in the websites of three national diabetes wellness programs for American Indians begin to coalesce “an actual set of practices that could effect positive change” (Million, 2013, p. 96). They offer profound possibilities for a story powerful enough to reduce health inequalities in Indian Country, especially the devastation from diabetes; however, barriers remain. In this section, I ask, where and how are the stories unwell? I turn to Lauren Berlant as I discuss how the dominance of a “cure” biomedical worldview prevents healing. I also note failures to listen to and use ecological, local, and gendered knowledge, particularly in lifestyle-only interventions, cueing from Indigenous scholars. Given the possible diagnoses, I provide an assessment and plan in the conclusion.

Slow death and cruel optimism are ways the stories are unwell. Because of biomedical dominance, the goal for diabetes prevention and wellness programs most often remains cure rather than healing. Biomedical dominance stems from economic and technology driven worldviews as another elder, Dr. Octavian Trujilli, interviewed in Sanderson et al. (2012), describes:

Indigenous Native American tribes are increasingly challenged to meet the demands of an economically driven, technology and research-based decision making world. These demands warrant creative solutions and innovative strategies to ensure that tribal communities maintain balance between the interplay of mainstream and tribal forces. (p. 68)

The diabetes prevention programs neglect what Duran et al. (2008) describes as a native way of healing: “Healing in a traditional Native worldview is primarily concerned with helping individuals learn how they fit into the overall cosmology” (p. 293). Quantitative metrics such as body mass index, glycolated hemoglobin, waist circumference, and miles walked evaluated the programs. Qualitative methods merely inform the development of the programs and disappear during evaluation (LaFrance, 2004). Therefore, the programs failed to stay committed to teachings from Indigenous knowledge. More adherence by diabetes wellness programs to the themes described in this article lead to more success healing diabetes in a native way.

Lauren Berlant theorizes everyday wearing down as slow death (Berlant, 2007) and the struggle to overcome wearing down as cruel optimism (Berlant, 2006). With slow death, the death defines not only the life of the current generation but also the history of the population. Life becomes the extended process of death. In defining cruel optimism, Berlant (2006) notes that false hopes regarding the materiality of life are the only sources of survival. Both cruel optimism and slow death connect theoretically with ideas from Indigenous scholars about colonial wounding. Indigenous peoples have been worn down, as Million (2014), argues to imagine only a medicalized worldview—the cure described in the first paragraph of this section. In contrast, Million also recognizes the power of place and story to transform–innovations powerful enough to reduce health inequities:

Indigenous peoples reached to the life-affirming stories of their enduring experience in these places, these places that are inhabited by our ghosts, our spirits, the spirits of the potential, the life force itself. They are people transformed, and transforming, living what they mean by any healing. (Million, 2014, p. 40)

In addition, the majority of stories about diabetes told require individual behavior change, particularly regarding weight loss. The behavior change fails to fit with Indian ways of healing and therefore perpetuates sickness. The community may view those who change behavior as sell-outs to the White man. “With the glucometer and the test strips staring at me from my coffee table,” writes Mora (2013), “the ‘fearless death’ path looked more than tempting—it looked glorious. I’ve seen many people choose this path, rather than test blood sugar and ‘sell out’ to the western ways” (p. 42). The fearless death path is that of an Indian warrior. Yet, as shown in the themes above, the warrior may be used to foster living well with diabetes instead. Mitchell (2012) recognizes the cultural concept of diabetes as a White man’s disease with healing rendered difficult by complex social constraints. Jack (2012) presents “social inclusion” and “empowerment” (p. 29) as critical to eliminating diabetes disparities in contrast to individual behavior change interventions. Yet even social inclusion and self-determination come with consequences as Smith (2014) notes:

Those who are put in the position of affixable others presume that liberation will ensue if they can become self-determining subjects—in other words, if they can become fully human. However, the humanity to which we aspire still depends on the continued oppression of affect others. (p. 209)

Cruel optimism enacted again.

The urgency of local health needs in Indian Country often overshadows visionary goals to improve population health (Chino & DeBruyn, 2006). Gone (2007) questions, “In the context of this bitter historical legacy and persisting asymmetries in power, what are we to make of the simple fact that the culture of the clinic is not the culture of the community?” (p. 291). Failure to meet urgent health needs perpetuates lack of trust in processes that could lead to visionary goals and improved population health. In addition, the diabetes prevention and wellness programs continue to lack local knowledge and dive into the relationship between stress, particularly stress associated with poverty, and diabetes (Smith-Morris, 2004). The most powerful stories remain silent and invisible. Native women have the greatest burden of disease, but few programs seek to uncover their knowledge (Olson, 1999). As Butler-McIlwraith (2006) argues in her article that carves a space for the Indigenous in sociology, the spaces of silence and invisibility become critical spaces for the visionary venture of reducing diabetes devastation in Indian Country.