How Data Obscures Community Resilience and Generational Wisdom

Camille Burnett: Hi, everyone. My name is Camille Burnett, and I’m here with Abigail Echo-Hawk. I’m thrilled to have her here.

Abigail is the director of the Urban Indian Health Institute and the chief research officer at the Seattle Indian Health Board.

Abigail Echo-Hawk: Greetings from the land of the Coast Salish people in Seattle, Washington, where my office is located.

I’m an enrolled citizen of the Pawnee Nation of Oklahoma on my father’s side, but I was born and raised in the heart of Alaska among the Upper Athabascan people in rural Alaska. I’ve had the incredible and unique opportunity to be raised in a very rural Native community while living and working in the thriving city of Seattle with urban Indian people.

Right now, about 71 percent of Native people live away from tribal lands in urban settings. That comes with unique strengths and unique challenges, and I’m excited to share some of those with you today.

As I sit here on this land, I always remember that I follow in the footsteps of my grandmother, my great-great-grandmother, my great-great-great-grandmother and everyone in my community who survived so that I could thrive today, and so that my children’s children can also thrive.

Camille Burnett: Thank you so much for that. You’ve underscored many key points that I think we’ll have an opportunity to return to, specifically thriving, flourishing and the spirit of generational resilience.

Abigail Echo-Hawk: In my role as director of the Urban Indian Health Institute, I direct a Tribal Epidemiology Center. We work to ensure representation through data, evaluation and research for policymakers and tribal leaders living in cities across the United States.

It encompasses a huge variety of things, and that’s what public health is. It means looking at everything affecting us, from access to food to the ways diseases like cardiovascular disease affect our communities.

We use the strengths and knowledge within my community to fill those gaps, revitalize our culture and ensure the health and well-being of our people moving forward.

One of the important things you highlighted was the need to understand culture while also practicing cultural humility, recognizing that the responses and answers we need lie within communities, and that those communities have unique cultures.

Communities of color across the United States each have their own stories, experiences and traditions to share.

Within that space, we also know there are significant health disparities. Our communities suffer disproportionately compared with other communities.

Because of these built-in health disparities, COVID-19 has affected my community in a way that keeps me awake at night. I have known multiple people who have died from COVID-19. Many of my friends and family members have contracted it.

These health disparities are directly linked to colonization and the continued oppression of American Indian and Alaska Native people. Diabetes, cardiovascular disease, cancer and asthma, all the risk factors that place someone at greater risk of complications and death from COVID-19, exist disproportionately within my community.

Every day, I am battling to ensure that our people are given the opportunity to live.

We recognize that now is the time to make incredible changes and undo these health disparities. It shouldn’t have taken a pandemic for people to realize that Native people were suffering under the oppression that exists within the United States.

But now that there is some recognition, this is the time to make those changes and say that these health disparities should not, and will not, continue.

Camille Burnett: You’re absolutely right. COVID should not have been the wake-up call for disparities that we know have persisted from generation to generation.

When we think about that, what do you see as the root cause?

Abigail Echo-Hawk: We have to talk about institutional and structural racism, and the structures that have been built to inhibit the health and wellness of communities of color.

For Native communities, this has been happening for more than 500 years.

I have been fighting for access to data about the impact of COVID-19 and other health factors, such as asthma, diabetes and cardiovascular disease, and what they look like within my community. But I can’t get access to it.

As a Tribal Epidemiology Center, I have legal authority under federal law to access data from the CDC. For the longest time, the CDC refused to give it to me. When they finally did, they gave me only a sliver, and what they provided was nearly meaningless.

What we’ve found around COVID-19, and what I have been shouting from the rooftops for more than 15 years, is that race and ethnicity are not being captured in medical records in the way they need to be.

How is that a symptom of institutional and structural racism? How does that perpetuate health disparities?

Policymakers, states and counties make decisions about resource allocation, interventions and prevention for cardiovascular disease, obesity, diabetes and now COVID-19 based on data.

When you don’t have the data, you simply don’t exist.

This continuous system that eliminates us through data is part of an active genocide against Native people.

Our treaty rights are based on tribal members like me. When you eliminate us from the data, you eliminate the number of people who have treaty rights. That helps the federal government eliminate its responsibilities to us.

These systems have long-lasting power and have existed since data systems were built.

Data is only one example. We also see it in discrimination within healthcare, where Native people and other people of color are treated differently. They don’t receive the same services. Implicit bias and other factors affect the quality of care they receive.

Camille Burnett: Abigail, you said that with so much passion and deep honesty. That is what it means to speak truth to power, and it needs to happen far more frequently.

It isn’t enough to talk about it. We have to be about it and do something about it. I think you’ve captured all of that.

Abigail Echo-Hawk: These systems were built to marginalize and push aside the impact that health disparities have on our communities. In my community, they have existed for hundreds of years.

When I meet people who work in data, I ask them, “When we aren’t included in the data, doesn’t that mean you are part of a system effectively eliminating my people?”

That is a difficult truth for them to sit with. I encourage them to sit in it and recognize that when I walk away, it may be easy for them to forget.

I can’t forget. I don’t have that privilege.

I will fight for my people every single day. What I want are allies and accomplices. I want people who will take this information and create change. I want them to challenge the practices they have participated in and examine where they have been complicit.

Camille Burnett: You have an ally right here. You have a sister and an ally right here.

So much of what you just discussed needs to be talked about over and over again, particularly these systems and structures.

In your work, you talk about more than what is wrong. You ask where we can go in terms of solutions.

Some of the work I focus on involves creating structural justice. How do we create justice within systems so that we aren’t merely bending the arc toward justice, but building justice directly into the systems and structures we create?

Thinking about solutions leads us to resilience and strength. I know that’s a large part of your work. You focus on strength and resilience as a more accurate way of discussing our communities, rather than relying on narratives centered on despair and hopelessness.

Abigail Echo-Hawk: I always think that my ancestors survived so that I could thrive. They passed incredible teachings down from generation to generation.

One of those teachings is that we take care of each other. We care for our young people and our elders, and they are at the forefront of everything we do as Native people in this country.

We care for the community as a whole. That’s what Western public health is trying to do now. They could have learned from Native people because we have always done that.

Our resilience is built into the fact that, even when our own circumstances aren’t very good, we give everything we have to ensure the well-being of the next generation.

Right now, in the midst of COVID, I see this happening across the country in ways that haven’t been as public before.

There is an incredible man in Minneapolis who began preparing meals made with traditional Native foods and delivering them to elders.

What does that do for my community?

First, they receive a warm meal. They receive traditional foods that are healthy and help prevent obesity, diabetes and cardiovascular disease. These are the incredible foods our ancestors ate.

It also nourishes them spiritually and culturally. For Native people, food and our connection to the land are part of our spiritual and cultural practices.

This young man in Minneapolis is feeding the minds, bodies, souls and spirits of these elders by giving them traditional foods.

We have forms of resilience that the rest of the country should be looking toward, particularly during a pandemic when we are being asked to evolve and change.

Camille Burnett: Connecting resilience with action is so important.

What do you think we can learn from your community and its practices more specifically?

We’re at a moment when we’re letting go of old approaches and looking toward new and innovative ones. What suggestions can you offer as we rethink and reimagine how we restore health, particularly during COVID?

Abigail Echo-Hawk: One of the real struggles during COVID has been that people have been unable to be beside their relatives as they died in hospitals.

When I think about resilience in my community, under ideal circumstances, we would be with our loved ones as they walk on to the next place.

But as a Native person, I have peace even when that isn’t possible. That comes from my connection to the land and my ancestors.

We are taught that our ancestors are with us at all times. Even when we can’t physically be in the room with a loved one who is passing on to the next place, I know their ancestors are there. I know they are with them.

While we remain outside, singing songs and praying for them, I know those ancestors carry the songs and prayers to our loved ones.

That gives us peace. That connection is part of our resilience, and it is something others can learn from.

I know I will continue fighting for my people every day to ensure their health and well-being. I am only one of many Native people doing exactly the same thing.

I will fight until my ancestors come and carry me home to the stars. That is the life I get to live.

Those are the lessons you can learn from Indigenous communities as we work to restore health and wellness, change systems of oppression and return to the understanding that we are never alone.

Our relatives are not alone. We are wrapped in love and community, and always held within the strength and prayers of our ancestors.

Camille Burnett: Abigail, thank you so much. You truly are a brilliant and gifted colleague, and I’m honored to now call you a friend.