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Jourdan Bennett-Begaye
Indian Country Today

Erasure is no longer on the menu.

I can recall the first encounter of erasure in the public health sector that elicited a visceral reaction of disappointment.

In the summer before my last year of undergrad at Fort Lewis College, I interned for the Centers for Disease Control and Prevention’s CUPS scholars program called Future Public Health Leaders Program in Ann Arbor, Michigan. It was one of the five programs in the country where 250 got selected out of a 2,500 applicant pool.

My program had two Diné college students. We both had ties to the Fort but never met or crossed paths (imagine that). We, of course, hung out and talked over the course of the summer.

This program took us to a small conference as part of the American Public Health Association in Kalamazoo, Michigan, in 2013. Our cohort listened to guest speakers and presentations all about public health.

I remember one presentation focused on the different health disparities in marginalized communities. The presenter talked about the social determinants of health and how that affects Black communities, Latin communities, and Asian communities. Each had at least 15 slides. It felt more like 50 slides at the time.

The Native American and Alaska Native communities slides came up and I sat there with pride thinking, “Yes! We’re being recognized. I know this information.” I was ready to ask questions.

It was over. We had two slides. One slide had a huge graph.

I looked at my Diné colleague. We’re both appalled and thinking, “What in the actual hell?” We talked real quick after and agreed we were going to speak with the presenter after.

We approached him, a Black man, and talked about our disappointment and concerns. His response was, “There isn’t enough data.” I told him point blank that there is and he isn’t looking in the right places and not hard enough.

(Related: Building a better data report)

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Graphic of the COVID-19 data collected by ICT from August 31, 2020. (Illustration by Indian Country Today)

Athletic training, health, public health, and a bit of medicine built my educational foundation. I wanted to be a physician’s assistant. I interned at hospitals, worked on the weekend, and put myself in challenging situations so I could grow into the health professional I wanted to be. But I quickly burned out and found it wasn’t a suitable lifestyle for me.

I never forgot the clinical experiences. My love for medicine and public health ran deep. So it was only second nature to start the COVID-19 database for Indian Country.

As I tell people, it started out of curiosity. I didn’t see anyone else doing it in the capacity I wanted to do it. Indian Health Services wasn’t keeping track at the time the database started but soon, they did. The data was broken down by the 12 IHS regions. They did their best to get as much data as they could but could only do so much. IHS direct facilities had to report their data. On the other hand, tribally owned and operated facilities (638 facilities as they’re known) could voluntarily give their data. Many didn’t. Other databases that started were grabbing data from states. But I wanted this data to come directly from tribes and publicly available data. I also wanted to give the data back to them to use. Because, like mainstream journalism, medicine had a way of going into communities, grabbing what they wanted and not giving anything back. We wanted the database to be open to scrutiny and showed our homework. Our data stood out, too, because we were the only ones who had a mortality count in American Indian and Alaska Native communities.

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I started the spreadsheet in the middle of March, the week that Navajo saw its first cases, and the spreadsheet began to grow. Our newsroom had eyes on every corner of Indian Country (another reason why every newsroom should have Indigenous journalists). Our team knew the communities and knew where to find the social media pages, radio stations, or websites. Sometimes the point person.

I probably spent four to six hours a day reaching out to people via phone or email, building rapport, collecting data, inserting the data into the spreadsheet, doing the math, and creating ICT newscast’s COVID report based on this data.

(Related: Infection rates at least 3.5 times higher for Native Americans; young especially at risk)

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Talia Quandelacy, a Native infectious disease epidemiologist, found our spreadsheet in April 2020 and began mapping the data, which was incredible. She is also a Johns Hopkins alum and postdoctoral fellow at the CDC.

After some time of mapping our data, she connected ICT with Johns Hopkins, and as they say, the rest of history.

It took more than 18 months for Indian Country Today and the Johns Hopkins Center for American Indian Health to create and launch the COVID-19 tracking map and data for tribal nations as part of the university’s coronavirus resource center.

A few things about the data and map:

  • It displays COVID-19 cases, vaccine, and death data from publicly available data from tribes.
  • The maps were adapted from IHS’ continental U.S. map and Esri’s map of Alaska Native village lands.
  • We wanted to show the impact of COVID-19 in American Indian and Alaska Native communities while respecting tribal sovereignty and individual privacy.
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In the conversations of launching this map and data, I often found that we were up against colonial ways of thinking and the team is always thinking of how to Indigenize it. So given that, there are many disclaimers. One being that the maps are limited to federally recognized tribal nations in the U.S. and Alaska village lands. The data doesn’t include urban Indian populations but that is our goal. This is the beauty in innovation and importance of Indigenous minds and knowledge existing in medicine, public health and institutional spaces.

As we say, it was a team and community effort. It was not funded. The map wouldn’t have happened without the 50-plus volunteers who were Native and non-Native students and those who took on the heavy lifting at Johns Hopkins like Anna Sundbo, Joel Espinoza, and the engineering team.

I’m forever grateful to all the leaders, health officials, and sources who helped us comprehend this data and allowed us to include their data.

Without data, we only have stories. Of course, they’re important. But in reality, this data makes those stories more powerful and contributes to creating systemic changes in all of the health care systems that take care of our grandmas, grandpas, aunties, cousins, etc.

This important data, that started from Indigenous experiences, allows for us to make greater change.

Yáadiláh! If no one is doing it, do it yourself. 

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