We all know someone with a chronic illness. Given that 117 million people in the United States live with one or more chronic illnesses, we’re more than likely encountering someone in our workplaces, our homes, and our everyday lives who is navigating the ins and outs of sickness and the pain that accompanies it. Chronic illnesses are especially pervasive among women, and thanks to medicine’s long history of paternalism and ambient sexism, doctors regularly dismiss or disbelieve women who suffer with unexplained pain.
“In Sickness” is a weeklong series about chronic illness—and what the misdiagnosis, disdain, and marginalizing of people with chronic illnesses reveals about our culture.
“Are you an Indian?” I’ve answered this question myriad times in various healthcare settings. I’ve stared the question down, shooting arrows with my Indigenous eyes. And I’d like to gather the collective rage of my ancestors to burn the question to the ground—much the way our crops and villages were burned by colonialists. Native people are often asked to define ourselves with these white supremacist, settler-created racial categories like “American Indian.” I am not an “American Indian.” I am a citizen of the Cherokee Nation of Oklahoma. I am Tsalagi.
When filling out official forms, including medical forms, I’m often forced to swallow my rage and check “American Indian” or write in “Native American”—another term I detest—in the “other” category. We’ve been turned into “Americans” to justify the theft of our lands and resources, and continuing to call us “Indian” reinforces the idea that we are loin-clothed savages who Columbus “discovered.” Then there is the “Other” box; this option is usually accompanied by an “American Indian” suggestion. This flattening ignores that Indigenous People are not a race, but hundreds of distinct nations with tribal sovereignty. And even when I mark one of these categories, I am still listed as “white” in my medical records. Erasing my Indigeneity ensures that I never receive the medical care I deserve.
I have suffered through many degrading and humiliating questions and comments from medical providers.
“Are you Indian? Tell me about your people.”
“I’ve been so excited to meet you! You’re Native American, right?”
“Deerinwater? What an odd name. What does it mean? Does it mean something bad?”
“You haven’t experienced racism in medical care. Some doctors may not give you your medications, but that’s not racism.”
I’ve had to answer these questions while my feet were in stirrups, while I was being rolled out of procedure rooms and in so much pain I couldn’t move, and even while I was in in the emergency room on the verge of death due to an abusive partner. These questions turn me into a museum relic on display for the non-Native gaze. These issues became worse when I moved to Washington, D.C. almost two years ago. I have experienced extreme anti-Native racism in D.C. After having back surgery at the George Washington University Hospital, employees repeatedly harassed me about my ethnicity and used the slur “redsk*n” in my presence.
A white nurse even repeatedly broke the doctor’s orders, denied me pain medication, and stated, “That’s ridiculous. You don’t need this and I’m not giving this to you.” I now take anxiety medication before most medical appointments, and I’ve canceled appointments when I can’t manage the abuse I’ll possibly face.
While these might seem like small slights, this kind of erasure guarantees the early deaths of Native people, especially those, like me, who are multiply disabled. The Indigenous people of Turtle Island die significantly earlier than all other ethnic groups: The life expectancy of Natives in Oglala County, South Dakota, where the Pine Ridge reservation is located, is 66.8 years—the lowest in the United States. This is lower than the the life expectancy in Sudan (67.2), India (66.9), and Iraq (67.7). This disparity is due to a number of factors, including the poor quality of medical care we receive.
The only healthcare available to Native people living on reservations is Indian Health Services (IHS), a federal program that’s consistently rated as the worst healthcare provider in America. IHS is also grossly underfunded: In 2016, Congress allotted $4.8 billion for IHS, which equaled out to approximately $1,297 per person. For comparison, each inmate in the federal prison system receives an average of about $6,973 in healthcare each year. There also aren’t enough healthcare clinics or hospitals to serve reservations and tribal villages, which forces many people to travel hundreds of miles for specialized care or simply go without.
Reproductive healthcare is virtually unavailable for IHS patients because the federal program adheres to the Hyde Amendment, which bars federal funds from being used for abortions except in cases of rape, incest, and saving a pregnant person’s life. Approximately 84 percent of Native women are abused in our lifetimes. More than 50 percent of us have been raped at least once. On some reservations, Native women are murdered at 10 times the national homicide rate. Despite this, it’s nearly impossible to access an abortion or healthcare after a sexual assault. And IHS has a long history of abuse that has invoked fear: In the 1970s, between 25 and 50 percent of people with wombs were sterilized against their will in IHS hospitals. The Claremore Indian Hospital, where I went as a child, was notorious for this heinous act.
I am choosing to fight: I now loudly proclaim at health facilities that the absence of “Native” as an option on their intake forms furthers settler colonialism and sends a clear message that we’re not welcome.
Healthcare is abysmal for Natives in urban cities as well. During the 1950s, the U.S. government passed a series of policies that ushered in the “Termination Era.” During this time, the federal government relocated many of us to cities. Seven out of 10 Natives live in or near cities but only 1 percent of the IHS budget is allocated to urban healthcare. It isn’t coincidental that we were moved to areas of “America” where the government doesn’t formally recognize many tribal nations. While we are eligible for non-Native health services, such as Medicaid and Medicare, we still have to navigate a medical system that refuses to acknowledge our existence, let alone practice cultural competency.
We also have the highest rates of suicide, diabetes, autoimmune diseases, heart disease, sexual assault, murder, and alcohol and drug abuse. My grandpa Deerinwater died from a heart attack in his 50s before I was even conceived. My father was an emotionally abusive dry drunk partially because of historical and intergenerational trauma. I have diabetes; I’ve attempted suicide several times; and I’ve been sexually assaulted so many times that I can no longer count all of the instances. I also have unexplained health issues, and I’m now being tested for autoimmune diseases.
Many of these health issues are a direct result of colonialism. Our lands and waters have been polluted due to resource extraction, toxic dumping, and nuclear testing. Dr. Sophia Marjanovic of the Ft. Peck Oglala Lakota and Sante Ysabell Ipai told me in an interview that, “My tribe had an oil boom in the 1980s. Ever since I can remember, water has come out of the faucet red, yellow, orange and smelling of petroleum and having oil droplets on top of it.” The number-one killer of our women is cancer. We have the most rapidly developing autoimmune diseases in the world and there’s been no accountability for it. The federal government has even facilitated the near-extinction of some traditional food sources, including bison.
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As a result of these genocidal practices, many of us can no longer grow, hunt, or fish for our traditional foods. Many of us are now dependent on the fat, cholesterol, sodium, and chemically laced government commodities that America deigns to throw our way. The Food Distribution Program on Indian Reservations, often referred to as “commodities,” have been distributed by the U.S. government to supposedly counter food insecurity and starvation on reservations. When there are no jobs or fresh produce, and a gallon of milk can cost upwards of $10 on our tribal lands, Native people face food insecurity and starvation at epidemic proportions. From 2000 to 2010, 25 percent of Natives in rural areas were food insecure.
However, government-provided foods are unhealthy and are often spoiled. These “handouts” have harmed not only our cultural ways, such as the ceremonies that our ancestors practiced around our foods, but they are also killing us. When so many of our elders die early, we cannot learn and pass down our traditions. We become only a shadow of our former selves. I lose a little more of myself every time I have to educate, stand up, and fight for myself and my communities, and file formal complaints in the medical system. These are battles that I shouldn’t have to fight. But since the U.S. government was designed to kill us, literally and metaphorically, the medical industry is continuing that mission.
I am choosing to fight: I now loudly proclaim at health facilities that the absence of “Native” as an option on their intake forms furthers settler colonialism and sends a clear message that we’re not welcome. Most employees seem befuddled by my rage and the tears in my eyes, but I’m also often the first “Indian” they have knowingly encountered, or at the very least, the first who’s called them on their settler privilege. But I’m seeking care so that I may continue to live, and hopefully thrive—because that’s what my ancestors wanted.