Wielding Native health data in name of equity
Advocate aims to dismantle idea that population ‘not statistically significant’
Data has long been in Abigail Echo-Hawk’s life. She remembers hearing stories while growing up in rural Alaska about Indigenous data gatherers, like an uncle who counted beavers every spring so he’d know how many could be sustainably hunted the following winter.
But it wasn’t until her early 20s that Echo-Hawk realized that data was not just information — it could also be power. After reading a report from the Urban Indian Health Institute about infant mortality in Washington state’s Native community, Echo-Hawk shared it with a volunteer commission on which she served. That led to a 2012 Seattle ordinance protecting the right to breastfeed in public, as breastfeeding is linked to reduced infant mortality.
“A story by itself makes it easy for somebody to say this was just one person’s experience,” said EchoHawk, who lives outside Seattle and is a citizen of the Pawnee Nation. Data, on the other hand, makes people pay attention.
Echo-Hawk has since become a leading voice of the Indigenous data movement. She directs the Urban Indian Health Institute and is the executive vice president of its overseeing body, the Seattle Indian Health Board. She wields data as a tool for racial equity, using it to dismantle stereotypes, highlight disparities and vie for funding.
Much of what she does boils down to making sure Indigenous people are counted.
“Her work tackling health inequities and bringing attention to the disturbing gaps in public health data for tribal communities is nationally recognized,” Sen. Patty Murray, D-Wash., said in an email. “Abigail is a change-maker in the truest sense of the word.”
Echo-Hawk rose to national prominence in 2018, when she released data on the high rates of sexual violence experienced by Native women. That was followed by a much-cited report on missing and murdered Indigenous women and girls. Although Echo-Hawk was far from the first or only person to draw attention to the issue, more than a dozen states created task forces or reports in the years following. Congress also passed two related laws.
Echo-Hawk, 44, comes from a family of Indigenous advocates. Her adopted grandmother fought all the way to the U.S. Supreme Court for subsistence fishing rights. One uncle helped found the Native American Rights Fund; another helped write the Native American Graves Protection and Repatriation Act.
Sofia Locklear, a member of the Lumbee Tribe and an assistant professor of sociology at the University of Toronto-Mississauga, said Echo-Hawk, her former mentor, had forced researchers to rethink fundamental questions like: Whom are we collecting data about? Who is collecting it? And what story are we trying to tell?
Because the nation’s American Indian and Alaska Native population is relatively small — 9.7 million people — some studies relegate it to an asterisk: “not statistically significant.” Yet some public health experts say that’s harmful.
The lack of data is “a way to erase Native people from dominant society,” said Melissa Walls, who is of Anishinaabe descent and is the co-director of the Johns Hopkins Center for Indigenous Health. “A lot of policy decisions are made based on data. And if there’s no data to tell the story of a given community, money’s not going to flow in our direction.”
Good data, on the other hand, can lead to changes in policy — and in mindset. As an example, Echo-Hawk referred to her organization’s report on sexual violence. “That changes the perceptions of what is happening,” she said. “We are not all killing ourselves because there’s something wrong with us. We have high rates of suicidality because of trauma.”
Echo-Hawk is a trauma survivor. She was sexually abused at age 6, and she first attempted suicide at age 9. In her late teens, she moved to Seattle, where she married and became pregnant with the first of two sons. After feeling stigmatized at the local hospital by a medical assistant who checked her arms for signs of drug use, EchoHawk found her way to the Seattle Indian Health Board.
“They got me on food stamps, they gave me medical services and they did it in a culturally based way,” said Echo-Hawk, who is divorced. “I was able to begin this healing process.”
For the next decade, Echo-Hawk cut hair during the day and took classes at night. In 2016,
she joined the research arm of the Seattle Indian Health Board. In the years since, the annual operating budget for her departments has surged to $9 million from around $1 million, an increase credited to her.
Besides publishing studies, Echo-Hawk teaches researchers how to include Indigenous people in the data. She also helps hospitals and law enforcement agencies change their data collection practices to reduce racial misclassification. (As Echo-Hawk put it: “A common saying in Indian Country is that you’re born Native and you die white — that’s what they mark you as on the death certificate because nobody asks you.”)
Although several people were effusive in their praise of Echo-Hawk, one Indigenous public health expert suggested that others had made more measurable impacts in the field but had garnered less attention. That is a critique and a compliment, as many say that’s exactly where EchoHawk shines: in drawing the public eye.
“If you have ever been in a room with her or seen her talk in person, you will never forget it,” Locklear said. Many call Echo-Hawk “bold” and “unapologetic,” traits that are reflected in the animal prints, heels and “big Native auntie laugh” she’s known for.