The erasure of Indigenous people in U.S. COVID-19 data

‘The United States had no idea what was going on in Indian Country. They have no idea.’


Indigenous peoples are bearing the brunt of COVID-19 infections. But in the sea of demographic, health and economic data collected by governments, academic institutions and research organizations, they are regularly excluded from study or put in the catch-all miscellaneous category of “other.”

This is not just a U.S. problem; it’s a global one. In September 2014, Indigenous nations from around the world voiced their concern about their omission from the large aggregate datasets compiled by their respective governments. The resulting invisibility makes the social, health and economic status of Indigenous people indistinguishable from that of majority groups. Disaggregated data is one solution to the problem. Disaggregated data — meaning data divided into sub-categories for specific sets of population — not only shows whether someone is Indigenous, for example, but also what their tribal citizenship is. During a pandemic, when Indigenous peoples are especially vulnerable to the impacts of invisibility, disaggregate data is important for revealing racial, tribally-specific inequalities. 

Rudolph Rÿser (Cree/Oneida) is the executive director of the Center for World Indigenous Studies, an Indigenous rights think tank. He’s also a leading researcher on the unique hazards the pandemic poses to Indigenous communities in the U.S. and beyond. High Country News spoke to Rÿser recently to understand the U.S. public health system’s exclusion of, or inaccurate data on, Indigenous peoples, from the 1918 influenza pandemic to today. This interview has been edited and condensed for clarity.

Photo courtesy Rudolph Rÿser

High Country News: What were some of your findings from your COVID-19 risk assessment in Indian Country?

Rudolph Rÿser: Our first finding was that almost none of the U.S. government or state or county or municipality data relating to any tribal community, whether on a reservation or adjacent to a reservation in urban centers, was even remotely accurate. They had nothing. And what we determined was that despite the fact that the United States and virtually every other country in the world agreed to disaggregate data back in 2014 — so that it would be possible to identify health and economic measures for Indigenous populations — the U.S. has done nothing like that. And the consequence is the United States had no idea what was going on in Indian Country. They have no idea.

The Centers for Disease Control and Prevention relies on the U.S. Census (Bureau). It doesn’t do a tribal census. It collected demographic data based on who identifies themselves as Indian, but not tribal citizens with geographical boundaries pertinent to tribal governments, which would be of greater use. And when tribal officials asked the CDC to share its data, the CDC and state public health departments said, “No.” The question would be, if tribes received the data, whether or not the data is accurate and useful due to aggregate data.

HCN: How did you decide what to include in the COVID-19 risk assessment research?

Rÿser: What we decided was that the research had to be based on geography. That is where people are located in relation to the spreading disease and the extent to which that disease traveled by vectors into tribal communities. Those were the factors we figured most important, because we knew that several tribes — Cheyenne River Sioux Tribe, for example — had decided they would throw up roadblocks and test people before they could enter tribal communities. Many tribes that had any information at all decided to do that, which I must say is exactly what tribal communities in many places all over the world have done.

We’ve got an excess of 9 million people in Native communities in the United States. Whether they are tribal nations, Alaska Natives, Pacific Islanders or Indigenous migrants, they are invisible and having to take care of themselves. Some, because of their geographic location, have been very effective in protecting themselves by containing their population and distancing themselves from urban areas. But those tribal communities that are not in geographic locations that allowed them to raise a barrier to disease transmission — like closing reservation boundaries — have been overexposed to the new coronavirus. 

“The United States had no idea what was going on in Indian Country. They have no idea.”

HCN: I hadn’t heard of that 2014 United Nations agreement to disaggregate data for Indigenous peoples. What was the agreement, and why is it important? 

Rÿser: The World Conference on Indigenous Peoples of the United Nations, comprising General Assembly member countries with regional Indigenous representatives, convened to discuss Indigenous human rights and best practices for world governments to maintain those rights. The meeting produced an agreement to commit to bettering the livelihoods of Indigenous communities around the world based on recommendations from Indigenous peoples. One of the articles of that agreement was to disaggregate data to raise the visibility of Indigenous peoples and provide them critical political, social, economic and health data. U.N. member governments, in consensus, agreed to a commitment to disaggregate data specific to Indigenous peoples, immediately. The United States has largely not disaggregated public health data for Indigenous peoples. And the consequences, what we're experiencing now, is the invisibility of Indian Country, the invisibility of Alaska Natives and Hawaiian Natives, of migrant Indigenous people and refugees — all of them invisible, but subject to the same disease and dying at greater rates than others in urban centers.

In 1918, American Indians died at a rate maximum of about 10% of the population. The only study that existed about the impact of the 1918 influenza on Indian Country focused on the Navajo Nation. And what they saw was the Navajo being rubbed out. There’s not a hell of a lot of difference (today). Whats happening now is like what happened then, except that Navajo Nation leadership has proactively tried to act contain the pandemic, even without the United States.

This pandemic will likely last for the next 18 to 20 months. And what worries me more than anything is that Indian Country will experience residual effects from infections of COVID-19, which is mostly thought of as a respiratory disease that affects the lungs. Scientists have found that people who were asymptomatic and others who have recovered from COVID-19 came down with serious heart conditions: inflammation of the heart and injury akin to a heart that has suffered a heart attack. Others found lung damage and adverse effects on the brain.

“We are in the worst possible situation since 1918, but we have the capacity to overcome this pandemic. The question is: Do we have the will?”

My question is: What the hell is Indian Country going to do with hundreds of thousands of people who are disabled from having been infected, or who carried the disease without showing symptoms? What are they going to do? I don’t know if Indian Health Services, which has been charged with treating Indigenous peoples’ already-high rates of chronic illness, is equipped to do squat about that, to be honest with you. So Indian Country has to figure out how it’s going to deal with the residual effect of the pandemic.

It will affect tribal schooling, how communities are organized. It’s going to affect how much they have in the way of financial resources. It’s going to have a dramatic effect. For a generation after this pandemic, we’re looking at residual effects on brain conditions and heart inflammation, harsh lung conditions where people can’t breathe. Where are the resources to support the hundreds of thousands of Indians who are going to experience those conditions?

HCN: What needs to happen to improve Indian Country’s situation during — and after — the pandemic?

Rÿser: So much tribal infrastructure has deteriorated to the point where tribes can’t rely on it. We (the Center for World Indigenous Studies) wrote to many of the tribes in the United States and called for a tribal-led, countrywide, regional and local organization strategy to deal with this pandemic, one that wouldn’t rely on the United States, the states or the counties. We just said, “Look, it ain’t going to work, paying attention to those guys. You’re going to waste your energy.” We didn’t get a response. You know, we are in the worst possible situation since 1918, but we have the capacity to overcome this pandemic. The question is: Do we have the will?


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