The Asterisk Nation, Indigenous Data Warriors, and the Fight for Data Sovereignty
7-8 Minute Read
Author: Julpohng Vilai, MD and Judy Hanrahan, JD, MA.*
*Portions of this piece were adapted from an original article, Indigenous data warriors and the ongoing fight for data sovereignty by Chiara Sottile, published on Stacker on October 26, 2023, pursuant to a CC BY-NC 4.0 License.
Purpose
To provide clinicians with an understanding of data inequities related to Indigenous/Native American populations.
Learning Objective
(1) Recall two examples of genocide against Indigenous/Native American people in United States history;
(2) Describe what the term “Asterisk Nation” means; and
(3) Explain two ways so called ‘data warriors’ like Abigail Echo-Hawk and Desi Small-Rodriguez are addressing issues of data inequity related to Indigenous/Native American populations.
“To reach equity, we have to walk through truth.”
Donald Warne, MD, MPH (Ogala-Lakota) (1)
Native American people in the United States are a vibrant part of the fabric of our nation despite a history of genocide against their people, land, and culture. If you find yourself bristling at the notion of genocide in this context, please consider the definition of genocide, the practices of the United States government, and the numbers.
It is considered genocide when any of the following acts are committed with the intent to destroy, in whole or in part, a national/ethnic group:
Killing members of the group;
Causing serious bodily or mental harm to members of the group;
Deliberately inflicting on the group conditions of life calculated to bring about its physical destruction in whole or in part;
Imposing measures intended to prevent births within the group;
Forcibly transferring children of the group to another group. (2)
The Indian Removal Act/Trail of Tears (3), tribal reservation system (4 citing 5), forced sterilization (6), and off-reservation boardings schools (7) are repugnant examples of an American genocide against Native Americans. These policies and practices resulted in the decline of the Native American population. Before 1942, in what is now Canada and the United States, the estimated population of Indigenous people was between 5-7 million (4 citing 5) (8). In the 1900’s, at its lowest point, the population of this area was approximately 350,700 (4, 9).
Asterisk Nation: Inequities in Indigenous Data Collection
The history of genocide against Native American people reverberates today in many ways including scientific data gathering and statistical analysis. The National Congress of American Indians uses the term “Asterisk Nation” to highlight the fact that Native American people are often excluded from statistical analysis and denoted by an asterisk with a notation along the lines of “Not statistically significant so no data can be presented.”(1) The exclusion of Indigenous/Native American people in public health and vital statistics data results from collection errors, single-race demography collection, and the exclusion of Native American people from the creation and implementation of the collection effort. Exclusion from data gathering, systemic undercounting, and inaccuracies result in part from the facts that there are no statistical data standards to govern the collection and reporting of Native American population data across federal agencies nor a mandate for state or federal agencies to collect race/ethnicity information.
In her plenary address to the American Society for Bioethics and Humanities in 2022, Abigail Echo-Hawk asks us to consider if the notation for the asterisk should give an explanation, for example “As a result of the genocide of American Indian and Alaska Natives and the embedded structural racism in data science, we have not properly represented American Indians and Alaskan Natives.” (1)
Funding and Public Health Implications of Under Counting
Being repeatedly left out of the data has profound funding implications for tribes. Census counts are used to calculate federal funding formulas for vital service allocations to American Indian tribes. By the Census Bureau’s own admission, the 2020 Census, like the 2010 Census before it, undercounted American Indians and Alaska Natives by an estimated 5.6% up from 4.9% in the previous Census.(11)
This is not surprising after a history of the United States Government explicitly excluding American Indians from the national census for more than 100 years prior to the passage of the 1924 Indian Citizenship Act.(12) Additionally, blood quantum rules, forced on tribes by the federal government, fractionated Native American people in an effort to dilute and thereby eliminate Native American tribes and cultures.(13) By requiring a certain quantity of “Native blood” or Native ancestry, the United States government attempted to limit the number of people who counted as Native American thus limiting the federal government’s treaty obligations. Eventually, through intermarriage Native Americans would become defined out of existence.(13)
Without accurate data, communities cannot get the resources they are entitled to and need to thrive. As an example, Native American populations suffered disproportionately from COVID-19. According to CDC Morbidity and Mortality Weekly Reports, Native American communities were infected with COVID-19 at a rate 3.5 times higher than, and died nearly twice as often as, non-Hispanic white people.(14, 15) This number is limited by the fact that fewer than half of states collected and/or released data broken down by race/ethnicity, with only 14 states reporting mortality numbers. This estimate, which likely underestimates morbidity and mortality, illustrates the problem of data exclusion.
Abigail Echo-Hawk (Pawnee), a self-proclaimed data warrior, is the executive vice president of the Seattle Indian Health Board and director of the Urban Indian Health Institute. As part of its work to decolonize data, Echo-Hawk looked specifically at COVID-19 racial data collected and analyzed during the pandemic to create a national Data Genocide Report Card.(1) The report noted that half of the COVID-19 cases reported as of September 16, 2020 were missing race and ethnicity data altogether, earning the U.S. an overall grade of D+.(16) The lack of data prevented Native American tribal governments and public health agencies from accessing essential resources, such as personal protective equipment, to fight the disease.
Data Warriors
Many Indigenous/Native American scholars and activists, including Echo-Hawk, are fighting for the right and ability of tribes to develop their own systems for gathering and using data. Dr. Desi Small-Rodriguez (Northern Cheyenne), assistant professor of Sociology and American Indian Studies at the University of California, Los Angeles, is part of a growing renaissance of Native American data warriors. Her traveling data science lab, which she calls her “Data War Pony” is a large trailer—a classroom on wheels equipped with computers and software, wrapped with native art. A researcher and data advocate, Small-Rodriguez rolls up to tribal communities (by invitation) to support collection and analysis of tribal data.
While engagement with Native American communities that are sampled, is the first and most important aspect of ensuring accurate and appropriate representation in the data, there are statistical techniques that one can employ to ensure that Native Americans are not erased from a data set. The literature includes strategies for surmounting those difficulties (17, 18) and institutions like the University of Arizona’s Native Nations Institute provide ongoing training on Indigenous Data Sovereignty and Governance.(19)
The Role of Non-Native Clinicians
As a pediatrician practicing in Montana at the time, my own personal journey intersected with Indigenous communities during the COVID-19 pandemic. I had the privilege of being welcomed by Kenny Smoker, Jr., a tribal member of the Fort Peck Tribes, to help promote healthy lifestyles in tribal youth by helping develop a school-based health program, primarily utilizing telehealth to reach 7 reservation schools and bring healthcare to areas without a pediatrician. While I would encourage every clinician to work in communities underserved by the American healthcare systems, I encourage you to consider the following questions:
According to the Data Genocide Report Card, how does your state rank? Is this a fair representation?
Does the language used by Indigenous/Native American data warriors, including the word genocide, make you uncomfortable? Given the historical context, should it?
When we interpret data, should we pay greater attention to the asterisks? By not recognizing excluded data, are we putting some populations at risk of poorer health outcomes?
As non-Natives, how can we move beyond land acknowledgments and meaningfully support the health and wellness of Indigenous peoples?
As Small-Rodriguez wrote, “All Indigenous data must start and end with Indigenous Peoples. Period.”■
References
(1) Echo-Hawk A. Decolonizing data: restoring culture and building beauty. Plenary address at: American Society for Bioethics and Humanities Annual Conference; October 27, 2022; Seattle, Washington.
(2) Office on Genocide Prevention and the Responsibility to Protect. Genocide. United Nations. Accessed November 11, 2023. https://www.un.org/en/genocideprevention/genocide.shtml.
(3) National Parks Service. Multi-State: Trail of Tears national historic trail. Accessed November 11, 2023. https://www.nps.gov/articles/trailoftears.htm.
(4) Smith, D M. Counting the dead: estimating the loss of life in the Indigenous Holocaust, 1492-present. Southeastern Oklahoma State University. 2018.
(5) Thornton, R. American Indian Holocaust and Survival : A Population History Since 1492. Norman: University of Oklahoma Press; 1987.
(6) Lawrence J. The Indian Health Service and the sterilization of Native American women. Am Indian Q. 2000;24(3):400-419. doi:10.1353/aiq.2000.0008
(7) Williams SM. Assimilation, Resilience, and Survival: A History of the Stewart Indian School, 1890-2020. University of Nebraska Press; 2022.
(8) Warne, D. Impact of unresolved trauma on American Indian health equity. University of Washington School of Public Health. Health Equity Lecture Series. Accessed November 11, 2023.
(9) Belshaw J D. Natives by the numbers in Canadian history: Post-Confederation. 2016. BCcampus.
(11) U.S. Census Bureau. 2010 Census Redistricting Data (Public Law 94-171). Summary File.
(12) National Library of Medicine. Citizenship, Service, and Sovereignty in the Native Voices: Native People’s Concepts of Health and Illness Collection.
(13) Rice K. Blood Quantum and its Role in Native Identity. The Indigenous Foundation. Accessed Novmeber 11, 2023.
(14) Hatcher S, Agnew-Brune C, Anderson M, et al. COVID-19 Among American Indian and Alaska Native Persons – 23 States, January 31-July 3, 2020. MMWR Morb Mortal Wkly Rep. 2020; 69:1166-9.
(15) Arrazola J, Masiello M, Joshi S, et al. COVID-19 Mortality Among American Indian and Alaska Native Persons – 14 States, January-June 2020. MMWR Morb Mortal Wkly Rep. 2020;69:1853-6. DOI: http://dx.doi.org/10.15585/mmwr.mm6949a3external icon.
(16) Urban Indian Health Institute. Data Genocide of American Indians and Alaska Natives in COVID-19 Data. Seattle, WA: Urban Indian Health Institute. 2021.
(17) Ericksen EP. Problems in Sampling the Native American and Alaska Native Populations in Changing Numbers, Changing Needs: American Indian Demography and Public Health (Sandefur G D, Rindfuss R R, Cohen B eds). 1996 National Academy Press. p113 -132
(18) Daly A, Devit S K, Mann M (eds). Good Data. Institute of Network Cultures. Theory on Demand Series: 29. 2019.
(19) Native Nations Institute. Indigenous Data Sovereignty & Governance. Webpage. Accessed November 15, 2023.