How Abigail Echo-Hawk uses Indigenous data to close the equity gap

“Transforming Spaces” is a series about women driving change in sometimes unexpected places.

Data has long been in the background of Abigail Echo-Hawk’s life. Growing up in rural Alaska, she remembers hearing stories about indigenous data collectors, like an uncle who counted beavers each spring to find out how many could be sustainably hunted the following winter.

But it wasn’t until she was in her 20s that Echo-Hawk realized that data wasn’t just information: it could also be power. After reading a report of the Urban Indian Health Institute on infant mortality in the Native community of Washington State, Ms. Echo-Hawk shared it with a volunteer commission on which she served. That led to a Seattle Ordinance of 2012 protect the right to breastfeed in public, since breastfeeding is linked to reducing infant mortality.

“A story alone makes it easy for someone to say this was just one person’s experience,” said Ms. Echo-Hawk, who lives outside Seattle and is a citizen of the Pawnee Nation. Data, on the other hand, makes people pay attention.

Mrs. Echo-Hawk Since then, it has become a leading voice of the indigenous data movement. She now directs the Urban Indian Health Institute and is executive vice president of its oversight body, the Seattle Indian Health Board. She uses data as a tool for racial equity, using it to dismantle stereotypes, highlight disparities, and compete for funding.

Although Ms Echo-Hawk admitted that not even her own mother really understands what she does, a lot of this comes down to making sure Indigenous people are counted.

“Their work to address health disparities and draw attention to troubling gaps in public health data for tribal communities is recognized nationally,” Sen. Patty Murray, D-Wash., said in an email. “Abigail is a change-maker in the truest sense of the word.”

Mrs. Echo-Hawk stood up to national prominence in 2018, when it published data on the high rates of sexual violence experienced by native women. This was followed by a much-cited report on Missing and murdered indigenous women and girls. Although Ms. Echo-Hawk was far from the first or only person to draw attention to the issue of missing women, more than a dozen states created working groups or corresponding reports in subsequent years. Congress also approved two related laws.

In an email, Sen. Maria Cantwell, D-Wash., credited that report with raising national awareness about missing and murdered Indigenous women. “Abigail Echo-Hawk will go down in history as one of the great Indian leaders of the 21st century,” she said.

In 2020, Ms. Echo-Hawk made waves again when shout the Centers for Disease Control and Prevention for not sharing data on the spread of Covid-19 among Native communities. The agency acknowledged there had been a “significant lack of communication” and he promised to provide tribal epidemiologists with the data they needed. The following year, Mrs. Echo-Hawk landed in Fashion after making a traditional dress out of body bags that were sent to her organization instead of the personal protective equipment she had requested.

Ms Echo-Hawk, 44, comes from a well-known family of Indigenous advocates. His adoptive grandmother fought for subsistence fishing rights until reaching the Supreme Court of the United States. An uncle helped found the Native American Rights Fund; another helped write the Native American Graves Protection and Repatriation Act. A sister ran for mayor of Seattle in 2021.

Sofia Locklear, a member of the Lumbee tribe and assistant professor of sociology at the University of Toronto-Mississauga, said Echo-Hawk, her former mentor, had forced researchers to rethink fundamental questions like: Who do we collect data on? Who picks it up? And what story are we trying to tell?

Because the country’s American Indian and Alaska Native population is relatively small… 9.7 million people — some studies relegate it to an asterisk: “not statistically significant.” However, some public health experts say that is harmful.

The lack of data is “a way of erasing Native people from mainstream society,” said Melissa Walls, of Anishinaabe descent and co-director of the Johns Hopkins Center for Indigenous Health. “Many political decisions are made based on data. And if there is no data to tell the story of a given community, the money will not flow our way.”

Good data, on the other hand, can lead to changes in policy and mindset. As an example, Ms. Echo-Hawk cited her organization’s report on sexual violence. “That changes the perception of what’s happening,” she said. “We are not all killing ourselves because something is wrong with us. “We have high rates of suicide due to trauma.”

Ms. Echo-Hawk is a trauma survivor. She was first sexually abused at age 6 and attempted suicide for the first time at age 9. In her late teens, she moved to Seattle, where she married and became pregnant with the first of two children. After feeling stigmatized at the local hospital by a medical assistant who checked her arms for signs of drug use, Ms. Echo-Hawk found her way to the Seattle Indian Health Board.

“They got me food stamps, they gave me medical services, and they did it in a culturally based way,” said Ms. Echo-Hawk, who is now divorced. “I was able to start this healing process.”

For the next decade, Echo-Hawk cut his 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, her department’s annual operating budget has increased from about $1 million to $9 million, an increase that is attributed to her.

In addition to publishing studies, Ms. Echo-Hawk teaches researchers how to include Indigenous people in data. She also helps hospitals and law enforcement agencies change their data collection practices to reduce racial misclassification. (As Ms. Echo-Hawk put it: “A common saying in Indian Country is that you are born Native and die white; that’s what they mark on your death certificate because no one asks you.”)

Although several people praised Ms Echo-Hawk effusively, one Indigenous public health expert suggested that others had made more measurable impacts on the ground, but had attracted less attention. This is both criticism and praise, as many say this is exactly where Ms. Echo-Hawk shines: in attracting the audience’s attention.

“If you’ve ever been in a room with her or seen her speak in person, you’ll never forget it,” Locklear said. Many called Ms. Echo-Hawk “bold” and “unapologetic,” traits reflected in the animal prints, high heels and “big native aunt laugh” for which she is known.

Ms. Echo-Hawk now spends much of her time doing what she does best: talking. Over the past four years, she has testified before Congress on numerous occasions and consulted with several lawmakers to make the language of her bills more inclusive. She responds to dozens of emails each month from tribes interested in starting their own data collection projects. She serves on a dizzying array of committees, including those of the National Institutes of Health and The Lancet, a leading medical journal.

“She asks the questions that people avoid,” said Dr. Aletha Maybank, director of health equity at the American Medical Association and co-chair of The Lancet’s anti-racism commission, on which Echo-Hawk works.

Mrs. Echo-Hawk still cuts hair for her loved ones too – a throwback to her days as a young, school-bound mother. She enjoys the opportunity to be creative, as well as the ability to know when the work is done.

“You have to have something in your life that, you know, you can complete,” he said.