Content warning: discussion of chronic illness, discrimination, dieting, sizeism, weight gain/loss
A year ago at this time I was 25 lbs. (11 kg) lighter, but not at much less risk for developing diabetes after having participated in my Tribe’s Diabetes Prevention Program (DPP). The Diabetes Prevention Program is a national program designed to target people and populations at high risk for diabetes and already designated as pre-diabetic. Let that explain how I got involved; according to the American Diabetes Association, “At nearly 16.1 percent, American Indians and Alaska Natives have the highest age-adjusted prevalence of diabetes among all U.S. racial and ethnic groups.”
My family has encountered this statistic firsthand. Last year my mom, my uncle and I stopped at Subway for lunch. Normally, we may have eaten at the nearby Hardee’s, a fast-food, burger joint. But, by this time I had enrolled into the DPP so I selected a venue with “healthier” options. After lunch, we exited to the parking lot, where my mom suddenly could not breathe properly and complained of chest pains. I frantically dialed 911 and begged them to hurry as she began to turn blue. My uncle and I raced to the hospital in his truck and met my mom there. Fortunately, she had not suffered a heart attack as I feared, but her doctor told us that the chest pain and inability to breathe was caused by fluid buildup in the lungs, a symptom of kidney failure. She had reached end stage renal failure as a result of her diabetes and would now need dialysis three times a week, for four hours a day, to live until she could receive a kidney transplant. When I shared my disbelief, her nephrologist (i.e. kidney doc) shared her own: “You don’t already know someone on dialysis?” she asked. “Aren’t you Native American?”
Her question wasn’t a completely unreasonable one. According to a 2004 report by the U.S. Commission on Civil Rights, “Native Americans are… 420 percent more likely to die from diabetes” than the general population. Almost every adult on my mother’s side of the family aside from my brothers and I are diabetic and involved in some sort of ongoing care to treat their diabetes. Still, I was angered by the doctor’s assumptions. These assumptions that I should know what diabetes entails and how it progresses are downright dangerous to the health of Indigenous peoples. Indeed, when I spoke with my mom some time ago about her impression of diabetes treatment on our reservation, she shared that since she was only asked to check in every three months she would skip her insulin until right before the tests because she would “look fine for the tests.” She thought this was okay because her doctors hadn’t adequately conveyed the course of the disease.
Indeed, this failure to communicate is a part of the structural and systemic racism and classism that make it difficult for Indigenous peoples in the U.S. to access quality healthcare. Widespread poverty among Indigenous peoples and racism in the healthcare industry contribute to negative health outcomes. Indigenous peoples in the U.S. suffer poverty at more than twice the rate of the general U.S. population. The consequences of poverty on health include unequal or lack of access to healthcare and unequal or lack of access to education because of inability to pay. The ability to advocate for one’s patient rights and understand treatment and care options are tied in with education. In addition, healthcare professionals, who are overwhelmingly white and/or non-Indigenous, have biases and attitudes that inform who they treat and how they treat them. Many of these healthcare professionals are ill-informed about the historical colonial policies that bear responsibility for these startling inequalities.
My experience in Oneida’s DPP clued me into the problems that can arise when receiving care provided by non-Indigenous peoples and when cultural competency is lacking. In 2011 I was diagnosed with pre-diabetes and was told, repeatedly, by my nurse practitioner that I must make a change in my diet, among other changes, to prevent the onset of diabetes. So, I finally began the program in January of 2012. I trekked over to the tribal Fitness Center where the program was administered and was surprised when I walked in to find that our instructors were all white women. While they were knowledgeable about the potential value of regular exercise and certain eating choices, they knew and understood very little about what it meant to be an Oneida person struggling with pre-diabetes.
One of my classmates was a very thin woman who was a walking myth buster about what people with pre-diabetes looked like. By all accounts she looked “healthy,” but she suffered from pre-diabetes, high cholesterol, and other health issues. When our instructors suggested that we purchase fresh fruits and vegetables and try to eschew foods high in fat and sodium, my classmate asked how she could eat such a diet or make such recipes when she received most of her foods from commods, i.e. government food distribution boxes of food. The instructor for the day stared at my classmate in utter confusion and asked, “What are commods?” This “one size fits all” approach to eating and living that didn’t take into account our realities as Oneidas left much to be desired.
What also unsettled me about the class was the hyper-focus on losing weight and thinness as supposed evidence of health. At the beginning and end of the course, the instructors took our measurements, our weight, and asked us to pose for before and after pictures. They complimented us when we lost a lot of weight in a week or at the end when our measurements were down. This left my thin classmate in somewhat of a bind because her health status couldn’t be measured in that way, and the instructors struggled on coming up with a way to “measure her progress” so to speak. I was left in a bind when, after losing the most weight in the class, I retook some standard tests looking at my blood sugar, insulin resistance, cholesterol and blood pressure and found that the numbers hadn’t changed and that my cholesterol had actually gone up a bit. I was disappointed at the outcome to say the least, and I soon gained back all of the weight as most people do when dieting.
It wasn’t all bad, and certainly I appreciate my Tribe addressing health inequities in our people and resisting the continuation of the colonial and genocidal project that results in disproportionate rates of disease and death in Indigenous peoples in the U.S. We have several programs and initiatives addressing health concerns. The Health Center gives priority to patients with diabetes and other chronic illnesses and provides many courses designed to help educate people on nutrition and mental and physical well-being. The Tribe also addresses structural issues such as poverty by offering preferred employment to Tribal members and Indigenous peoples and providing housing for families and nursing facilities for the ill and/or elderly. To address food issues, the Tribe operates an organic farm and shops meant to provide healthy foods to Oneida peoples. The Food Distribution department also offers workshops on planting, harvesting, and canning foods.We hope this holistic and multi-pronged approach will help change health outcomes in Oneida.