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Abigail Echo-Hawk on the art and science of 'decolonizing data'

The chief research officer of the Seattle Indian Health Board is creating programs and databases that are not based on Western concepts to better serve indigenous communities. 

This conversation has been lightly edited for clarity.

I was born and raised in Alaska. And then came to Seattle when I was 18, and have been here ever since. My sisters were here — I have a large family, and I followed them. Being from Alaska, I wanted different educational opportunities that I didn't have there.

When I came here to Seattle, it took me a little bit to find the urban Indian community. We're not as present and as visible in this city, and you've got to know where to look. But once I was able to find the Seattle urban Indian community, it really has become a way of not only sustaining my way of life, but also consistently giving me hope, knowing that we're building a stronger future for our people.

The Seattle Indian Health Board was the first urban Indian program that I went into, when I was 19 years old, and now I work there. Thanks to the services that they provided me, I now have a place to call home, in regards to serving the people who served me.

I was pregnant, and I had been really mistreated in a hospital system here in Seattle. I was definitely stereotyped and received prejudice as a result of me being a young Native woman who was pregnant. My sister knew about the Seattle Indian Health Board. I hadn't been here very long, and she told me that that's where I could go and get medical care that would meet me, and understand, and not mistreat me as a result of being Native.

When I walked through the doors, all of a sudden, not only was I surrounded by incredibly culturally attuned services, but all these Native people that I hadn't been seeing on the streets of Seattle. And from there, I was able to connect with the community at a larger scale.

I'm the chief research officer at Seattle Indian Health Board. [As part of that,] I direct the Urban Indian Health Institute. I help oversee and understand what's going on with our clinical population, and work with our chief medical officer and our CEO to make sure that we're serving patients really well. We're also building up brand-new data systems for us to be able to access our information, and to be able to use that for programming, and policies, and looking for where we need to make further investments.

The words “public health” are a Western concept, but my parents were the first public health practitioners I knew. They always took care of people, they took them to doctor's appointments, they fed them, they got a roof over their head. All of those things are public health. I'm really fortunate that now we have these systems that are providing support to our people in a multitude of different ways.

[Public health] touches on so many different fields that I could go and work in a lab. I could work in a clinic with patients. I could just look at data and building out systems. But one of the things we do the best is decolonizing data. And that is really what my organization and I have really focused us on the last couple of years, gathering data for indigenous people, by indigenous people.

Abigail Echo-Hawk at the Westin in Seattle on May 29, 2019. Echo-Hawk is the chief research officer for the Seattle Indian Health Board and the director of the Urban Indian Health Institute. (Photo by Dorothy Edwards/Crosscut)
Abigail Echo-Hawk at the Westin in Seattle on May 29, 2019. Echo-Hawk is the chief research officer of the Seattle Indian Health Board and the director of the Urban Indian Health Institute. (Photo by Dorothy Edwards/Crosscut)

The Urban Indian Health Institute is one of 12 tribal epidemiology centers across the United States. Eleven of them serve regional areas that are federally recognized tribes across the U.S. We're the only one that is national. And we are the only one that specifically serves the urban American Indian/Alaska Native population. Right now, 71% of American Indians/Alaska Natives live in large, urban settings across the United States.

The Urban Indian Health Institute was born out of this time when the urban Indian community was saying, "Hey, we're living in these cities.” We're always being shown as statistically insignificant. Our health data needs to be represented. We need to be doing more research. We need to be gathering our own information.

Our responsibility as a tribal epidemiology system is to make sure that they're represented in the data. It’s to make sure that they're present in the research, that they get good data data analyses, that we work with them to provide evaluation services and really looking at building public health capacity across their programmings.

When we think about data, and how it's been gathered, is that, from marginalized communities, it was never gathered to help or serve us. It was primarily done to show the deficits in our communities, to show where there are gaps. And it's always done from a deficit-based framework. They talk about how our communities have the highest rates of obesity, have the highest rates of diabetes, highest rates of infant mortality. How our people may be experiencing high rates of opiate misuse.

What they don't talk about is the strengths of our community. What we know, particularly for indigenous people, is that there was a genocide and assimilation policies and termination policies that were perpetuated against us. If they had worked, we wouldn't be here. And so we were always strength-based people, who passed on and continued knowledge systems regardless of people who tried to destroy us.

As indigenous peoples, we have always been gatherers of data, of information. We've always been creators of original technology. And so I was brought up with knowing that that was the ancestral knowledge from which I came.

When I went to the University of Washington [and studied policy], I was able to take some of the Western knowledge systems and understand how that related to the indigenous. I recognized that the systems that were currently working towards evaluation, data collection, technology, science, and the way that we looked at the health of Native people weren't serving my people, because they didn't have the indigenous framework.

Decolonizing data means that the community itself is the one determining what is the information they want us to gather. Why are we gathering it? Who's interpreting it? And are we interpreting it in a way that truly serves our communities? Decolonizing data is about controlling our own story, and making decisions based on what is best for our people. That hasn't been done in data before, and that's what's shifting and changing.

I always think about the data as story, and each person who contributed to that data as storytellers. What is our responsibility to the story and our responsibility to the storyteller? Those are all indigenous concepts, that we always care for our storytellers, and we always have a responsibility to our stories.

I wasn't looking for a new job. I had been working with the University of Washington, where I worked at a very large research center, then moved to Washington State University, again, directing a large research center. But the CEO of the Seattle Indian Health Board approached me and said that they had this opening.

I went back to my family and asked them if it was the right thing for me to do, because that's how we work in my family. That's how tribal communities work, because you don't make these kinds of huge decisions by yourself. You make them together as a community, as a collaborative.

In the end, the decision was that this was where I could serve my people the best. This is where I could step out of the academic bureaucracy and move forward just as an indigenous person.

I realized that my family helped me make the right choice when I walked into my office that first day, and I saw this black file cabinet in the corner. For about a year and a half prior, maybe two years, I had been having this dream where I would see a black file cabinet with a purple sticker. In my dream, I even had to be quiet. I had to listen, I had to be calm. And I could hear soft weeping, and I could tell it was women. I had no idea what it was. I asked my community, my elders. Talked to my family, my husband. No idea. But when I walked into that office that day, I saw that cabinet in the bottom, with a purple sticker.

When I opened up that file cabinet, going through all of the things in my office on that first day, I found what was left of a study that had been done on sexual violence against Native women living in the city of Seattle. It had been locked in that cabinet and into our computer systems for way too long.

[The Seattle Indian Health Board] had decided to not publish this information because of how drastic the data was showing the rates of sexual violence against Native women. There were fears that it could stigmatize Native women, and that would cause more harm than good. But those women had shared their story, and we had a responsibility to them, and to the story, and I take that very seriously.

When I took it to the community and said, is this the right thing for us to go and release this information? I got a resounding yes. I did not hear a single no. These women had shared with us their most traumatic events. And, along with that, the behavioral health things that resulted. ... We saw things like high rates of suicide attempts, high rates of opiate and alcohol use, high rates of homelessness.

What this research found, with 148 Native women, that 94% of them had been sexually assaulted in their lifetime. There had never been numbers like that before. I believe that, if I was to go out and do this in other urban cities, I would find similar things. And I intend to do that, again, because of my responsibility to the people, and to the stories, and to what has been expressed to me after the release of the report. Their ages ranged from 18 to the 80s. And for those who were sexually assaulted before the age of 18, which was almost all of them, the average age was 13.

If you think about a 13-year-old who has been sexually assaulted —  some who were sexually assaulted many times across their lifetime — what they're doing in regards to attempting suicide is coping, is treating their trauma. The alcohol. The opiates. Being homeless. All of those things are symptoms of extreme rates of trauma.

We found that very few of them actually reported to the police. For those few that did report it, only eight cases [of the 148] actually saw conviction of the perpetrator. Women of color and Native women do not see justice in the system and, as a result, they don't report. As a result of the tensions between the Seattle Police Department and the Native people and the Native community, our women aren't reporting. There is no justice. Instead, we live with trauma.

I identify as a woman who has been raped. I share that very openly, because I know that I've had the opportunity to move forward in healing. Not everybody has. And I want people to know that it is possible. And I share it because it's necessary to know that there are stories with the data.

When that report went out, the response I got was overwhelming. I came back to an inbox, and my email, and every social media outlet I have, full of stories of Native women from across the country who had been sexually assaulted. Story after story after story after story.

It was very triggering at times, as somebody who had also experienced sexual assault. I had to take a little break and go back to my community. Part of decolonizing data is that, for us, the prayer, the spirituality, the connection to the culture is what allows me to keep going in times where the data gathering is hard, and difficult, and overwhelming, and sometimes feels like it could just shut you down. I have to go back to [my community] to get that healing, to be able to move forward.

Because in all of these emails, and Twitter, and everything you can think of, I saw so many times this exact same line: "I just wanted to tell somebody who would understand." And I thought, hundreds of women, more than several hundred reached out to me, all saying the same thing. Why has there never been anybody who listened before in their lives? Why have they never been able to tell this story? Why have they never been believed?

That is the change and the shift that we're doing with this data. We held a community gathering, and we're moving forward [as a community]. Because everybody deserves to tell their story to somebody who will believe them, and somebody who won't judge them. People who won't victim-blame them, or victim-shame them. They deserve to have their stories told, because they're more than a data point.

One of the ways that there is a continuing genocide against American Indians/Alaska Natives is through data. When we are invisible in the data, we no longer exist. When I see an asterisk that says "not statistically significant," or they lump us together with Pacific Islanders and Asian Americans — you can't lump racial groups together. That is bad data practice.

That was one of my first initiatives, when I started at UIHI, [to create] the very first online data dashboard of health indicators of urban American Indians and Alaska Natives in the country. And it covers more than 30 areas and also does a national aggregate. This doesn't exist for tribes, and this doesn't exist in any other way for urban Indian communities. And so it is using online data tools for equity purposes. Now somebody can't say, "Well, I couldn't find out what the educational attainment was in Denver, Colorado for urban Indians."

I'm not here to indigenize Western science. I already have culturally rigorous scientific approaches. I know that they not only meet Western standards, they go above and beyond. But that challenges everything anybody was taught in high school, in college, in Ph.D. programs. Sometimes I get people who come out of university systems that I have to reteach, so that they can understand how to do data, create programs and create databases that meet the needs of indigenous people, that are not based in Western concepts.

I believe that other communities could benefit from our framework. And we want to show them. Because what if all research was done just because we loved people? Not because we wanted fancy careers, but just because we wanted everybody to be healthy and whole.

That is our ancestral consciousness, the continuation of those who held on to those stories, to those practices, so that I can exist here today. I always think, I'm a tangible manifestation of my ancestors' resiliency. In the 1830s, they estimated the Pawnee people to be about 38,000. By the census of 1910, there was only 633 of us left. Ninety-two percent of our population had died in less than 100 years.

I know who I'm descended from. I know their stories. And they survived so I could thrive. So I am going to continue that legacy that I am so blessed to follow in footsteps of — the consciousness and the stories that they whispered, in languages they weren't supposed to speak anymore, of cultural practices that they attempted to outlaw. The grandmas whispered them ear to ear, generation to generation, so that I could practice them today, so I could have that dream. And that's what indigenous research is, that continuity.

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Abigail Echo-Hawk on the art and science of 'decolonizing data'

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