The Generational Impact Of Racism On Health: Voices From American Indian Communities
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We come from a long line of storytellers—Indigenous people who have passed down information from generation to generation. American Indian and Alaska Native people use oral, written, and visual stories so that the audience not only hears but also feels the lived experience.1 In this article we present deeply personal stories collected from the author group through our connections with people in our communities, in the general context of our work on Indigenous ways of knowing, community-driven research and engagement, and eliminating health disparities. These stories exemplify important themes that we explore throughout the article.
These stories elucidate the cumulative health effect of biases in institutionalized policies and structures, describe epigenetic trauma and its links to health disparities, and use our personal experience in policy development as a model to influence policy makers. We then draw from the wisdom of tribal leaders, traditional healers, and community members to make recommendations to deconstruct institutionalized racism to benefit American Indian and Alaska Native people.
Structural Racism In The COVID-19 Pandemic
The first story we share illustrates how structural racism in US policy exacerbated the toll of the COVID-19 pandemic on the Navajo people:
“My uncle aged seventy-five years died from COVID-19 on December 13, 2020. His grandkids pounded on the glass window to his room in biohazard suits, desperately clinging to the hope of holding their grandfather one more time and not have him die alone. ‘Nali [grandfather], we are here, can you hear us?’ we said. ‘We can’t come in, but we are here! We love you, Nali!’ Soon after the death of my uncle, three aunts, one cousin, and an in-law all were hospitalized with COVID-19 far from home and died alone while family held vigil by iPad, telephone, or prayer. All six were a month away from being able to receive the COVID-19 vaccination. The deaths of all six can be connected to a history of structural racism and historical trauma experienced by American Indians and Alaska Natives from first contact to the present-day pandemic.” —Agnes Attakai, Diné (Navajo)
The Navajo Nation has been hit particularly hard by the COVID-19 pandemic: Approximately one of every 188 Navajo people have died, with the majority of deaths among elders ages sixty and older.2
The devastating impact of COVID-19 can be directly linked to the historical discriminatory beliefs and values of the US government.
The devastating impact of COVID-19 on American Indian and Alaska Native communities can be directly linked to the historical discriminatory beliefs and values of the US government, which created policies that sanctioned inequitable systems of housing, education, employment, health care, environment, and infrastructure. The history of American Indians and Alaska Natives since European colonization is often divided into six periods of treaty and policy making: treaty making and early US-American Indian relations (1776–1810s), removal from ancestral lands (1820s–80s), land allotment and social assimilation (1880s–1934), reorganization of tribal governments (1934–50s), termination of certain US-tribe relationships and relocation from reservations to urban areas (1950s–60s), and self-determination and nation building through tribal control of public services and governing (1960s–present). During the treaty-making period, for instance, American Indian and Alaska Native peoples gave up their land in exchange for reservations and protected treaty rights, including the right to health care.3,4
Policies enacted during these periods included the removal of American Indians and Alaska Natives from their homelands—in some cases to prisoner-of-war camps that then became reservations—which left people living in remote food deserts and toxic environments and lacking adequate health care and access to the basic necessities of life. During the removal period, tribes were forcibly removed from their homelands and settled on reservations across the country.3,5 In the case of the Navajo Nation, between 1863 and 1866 the US Army marched more than 10,000 Navajo people up to 450 miles to Bosque Redondo, New Mexico, and imprisoned them there.6 With starvation, disease, and death rampant, Navajo leaders negotiated the Treaty of 1868, which released them from internment and created the Navajo reservation.7 The Navajo reservation—the largest of approximately 326 land-based US reservations—serves as an example of the lack of infrastructure on tribal lands. Seventy-five percent of its roads are unpaved and are unpassable during inclement weather, limiting transportation to health care facilities and access for emergency vehicles.8
Reservation communities are generally rural, remote, or both, with little to no supporting infrastructure; more than 30 percent of people living on the Navajo reservation lack piped water and electricity.9 Water sources, including wells and water stations, can be miles away, requiring transportation to access them.10 Lack of water has been linked to increased COVID-19 cases among the American Indian and Alaska Native population.11,12
Only thirteen grocery stores serve the more than 27,000-square-mile reservation; in addition, many online and other retailers do not ship to Post Office boxes, and a majority of rural areas on reservations do not have street addresses.13 The inability of residents to prepare healthy food and purchase personal protective equipment such as antibacterial wipes and cleaning supplies has hampered viral transmission prevention efforts.
As the pandemic took hold, lack of technological infrastructure, including telephone and internet services, also decreased contact tracing14 and limited access to current guidelines and recommendations. Messaging only in English failed Native language speakers: Culturally appropriate messaging and language could have decreased incidence rates.11
Similar to many American Indians and Alaska Natives, the Navajo elders discussed in this article live in multigenerational crowded homes with adult children, grandchildren, and other relatives. Affordable housing, defined as 30 percent or less of household income,15 is not available on the reservation or in bordering towns. Such living conditions make social distancing impossible, increasing exposure and transmission to others in the household.
Distance to health care, a lack of health insurance, and a lack of facilities also affected our COVID-19-infected family members. The Navajo Area Indian Health Service (IHS) is the primary health care provider in the region, serving more than 244,000 American Indians through five hospitals that have a total of 222 beds.16 As the pandemic overwhelmed the hospitals, our reservation-based relatives infected with COVID-19 had to be air transported to hospitals in Flagstaff or Phoenix, Arizona.
Across the United States funding for the IHS meets about 54 percent of the health care needs of the American Indian and Alaska Native population, allotting approximately $4,079 per person for health services, which is nearly 50 percent below the per person expenditures made by other public and private providers.17 Although the US government has an obligation to provide health care to American Indians and Alaska Natives through the Indian Health Service, it spends approximately $6,500–$10,000 less per person on American Indian and Alaska Native health than it spends on veterans’ health and Medicare patients, respectively.18 The impact of COVID-19 on American Indian and Alaska Native health will continue beyond the pandemic. Loss of American Indian and Alaska Native lives—especially the loss of elders—means loss of Native culture, including language, ceremonies, and more.
Through the pandemic, access to traditional healers and ceremonial or spiritual interventions dwindled because of public health recommendations to cease or restrict gatherings. These restrictions forced the mobilization of grassroots spiritual organizations in Native communities, which quickly established guidelines to further protect highly regarded spiritual leaders and wisdom keepers.19
Disruption Of Balance And Harmony: Boarding Schools
The second story we share illustrates the colonizing force of US policy that sent American Indian and Alaska Native children to boarding schools, which then affected the physical, mental, and spiritual health of the community for generations:
“My mother was born in 1951, the middle child of seven living in a two-bedroom, one-bathroom home. Though employed by the US Army, my grandparents barely made ends meet, so they decided to send their children to boarding school. My mother, just a small child, was sent 150 miles from home to the Phoenix Indian School, where they promised to ‘“civilize” and assimilate the Indians to American society through a process of education that sought to obliterate their native cultures.’20 My mother was whipped with belts and wooden boards when she spoke her Native language or did not pay attention during religious lectures. She couldn’t go home for the holidays and was only able to see her parents once a year, when they had enough money to travel to Phoenix to visit their children. Her stories remind me of prison life, and in many ways, it was a prison for American Indian children completely innocent and alone. But the worst atrocity was the sexual abuse that my mother experienced at the hands of people who were supposed to protect her and practice the word and work of God. By the time my mother returned home to attend high school, the psychological and physical abuse had already taken a toll.
“I have watched my mother struggle in life. To help cope with the boarding school trauma and her living situation, she began using cannabis recreationally. Then she met my father and entered another dark chapter in her life, enduring several decades of verbal and physical abuse.
“In the middle of the night, carrying only a diaper bag and me, she left everything else behind and walked into the unknown, with broken ribs and a bruised body. For the next ten years, we lived on the reservation without running water or electricity, driving seventeen miles for food and supplies. From the outside, many considered her to be a strong woman, but on the inside, she struggled to keep going, occasionally contemplated suicide, and smoked cannabis to ease the psychological suffering. When I was in middle school, she was incarcerated for selling cannabis, and I lived with my aunt and her family for almost a year, visiting my mother once a month at the correctional center. After her release, we lived in a homeless shelter for several years before moving back to the reservation. There were many occasions when we only had enough food to eat one meal a day. Yet my mother managed to obtain an associate’s degree in history preservation and I am currently completing a master’s degree and will be pursuing a doctorate in virology. Despite the systemic and generational trauma we experienced, we are resilient.” —American Indian graduate student (name withheld for privacy)
From the 1790s through the 1860s more than 500,000 American Indian and Alaska Native children were sent to boarding schools run by religious organizations with the goal of “civilizing” and proselytizing Native children.21,22 This era has been compared with other dark periods of US history: “Perhaps, like the Trail of Tears or Wounded Knee, the boarding school as an institution is symbolic of American colonialism at its most genocidal.”22 The abuses suffered in Indian schools by generations of Native children reflected the broader sentiment in the country, uttered by Army officer Richard Henry Pratt, founder of Carlisle Indian School, of the need to “kill the Indian in him, and save the man.”23
Although some children were sent to boarding schools by their parents, others were simply kidnapped. By the 1870s the US federal government had taken over Indian schooling with the goal of “civilizing” Indians through basic academics, vocational training, and discipline through military-like drills and corporal punishment.21 Boarding school survivors report enduring sexual, physical, and psychological abuse.21,24,25
The deliberate cultural genocide caused by forced separation led to a loss of modeled parenting skills and valuable, culturally grounded gender and family roles.
The deliberate cultural genocide caused by the forced separation of American Indian and Alaska Native children from their families and from their tribes also led to a loss of modeled parenting skills and valuable, culturally grounded gender and family roles. When children graduated and were sent home, they had lost their sense of belonging, their language, and their culture. The things they would have been taught in a traditional home about love, caring, nurturing, and culture were lost. Instead, they learned discipline, punishment, and abuse. This imbalanced upbringing resulted, for many boarding school survivors, in mental illness and substance abuse that would persist in their descendants’ oral histories, psyche, and genetic expression. Studies have validated the intersection of the physical and psychological impact of historical and contemporary trauma among American Indian and Alaska Native communities.25–29
A Legacy Of Health And Social Disparities
Structural racism in US health policy has resulted in a legacy of health disparities for American Indians and Alaska Natives.
Structural racism in US health policy has resulted in a legacy of health disparities for American Indians and Alaska Natives, including a life expectancy 5.5 years less than that of other races combined in the US.30 American Indians and Alaska Natives are also twice as likely to die of alcohol-related causes,31 despite having rates of alcohol use that are comparable to those of the general population.32 Research has shown that racial and ethnic stereotyping in clinical settings can contribute to low-quality care and disparities among underrepresented minorities33,34 and, more specifically, that health care providers do not provide comprehensive care for alcohol dependence because they are influenced by the negative stereotyping of American Indians and Alaska Natives as “drunken Indians.”35,36 For substance use disorder, the American Indian and Alaska Native population rate is 11.2 percent compared with 7.8 percent for the White non-Hispanic population.37 In addition, American Indian and Alaska Native women are more likely to experience physical violence than White non-Hispanic women (51.7 percent and 30.5 percent, respectively) and are also more likely to experience psychological aggression than White non-Hispanic women (63.8 percent and 47.2 percent, respectively).38 It is worth noting that violence against American Indian and Alaska Native women is particularly prevalent on tribal lands because of policing and judicial practices and jurisdictional inconsistencies when violence occurs on tribal or nontribal land, and because of federal policies that consider the race of the perpetrator and the victim. Assault by a non–American Indian on an American Indian woman on tribal land is treated differently than if the same action were perpetrated by an American Indian. Adjudicating cases of violence against American Indian and Alaska Native women can be daunting, and cases often go unheard.39–41
American Indians and Alaska Natives also experience stark disparities in social determinants of health. They face the highest poverty rates of all racial groups in the US (26.2 percent in 2016),42 severe shortages of housing, and high rates of homelessness (American Indians and Alaska Natives represent 1.7 percent of the US population30 but 5 percent of the homeless population and 7 percent of the unsheltered43). American Indians and Alaska Natives are likely to live in overcrowded conditions, with 10 percent of living quarters having plumbing or kitchen deficiencies or both.44
Social factors, such as historical trauma, are linked to genetic and biological factors that affect health. Relations between colonizers and American Indians and Alaska Natives include long and extended exposure to violence and trauma that can be linked to the physical, mental, emotional, and spiritual health of the descendants of American Indians and Alaska Natives even decades later.25,45,46 Historical trauma can be experienced at the individual level and transmitted over generations to a collective group experiencing the effects of human-created events.26,47 Such experiences are linked to health disparities through the function of the stress response system via epigenetic changes.48,49
Epigenetic changes provide the connection between environment and exposures and genes, resulting in phenotypic outcomes that can include poor health.50 Unlike genetic changes, epigenetic changes do not change the DNA sequence but, rather, alter the epigenome, communicating which genes to turn “on” and “off” and how often.50 These changes can be inherited over the life course, including at fertilization or in utero.51
Cultural Wisdom: A Model For Policy Change
Although specifics may vary, most American Indian and Alaska Native peoples adhere to the belief that all of creation is interconnected and cannot be separated into individual components. In this worldview, life is cyclical and nonlinear and inherently includes a spiritual world. Wellness occurs when the individual parts of creation are in harmony and balance with one another.
From an American Indian and Alaska Native perspective, balance is a state of being in harmony with the universe and living in accordance with the natural way of things, where there is harmony among human, natural, and spiritual systems. Within that worldview, disease and ill health occur when an element in the environment—mental, physical, or spiritual—is in disharmony.52 Traditionally, American Indian and Alaska Native peoples believe that illness can be transformed through spiritual ceremony and that their traditional and spiritual practices help them maintain their way of life and keep them strong and healthy. American Indian and Alaska Native peoples understand the relationship they have with and responsibility they have for the environment and how their traditional teachings help maintain their spiritual, physical, and emotional well-being. These include family and community activities that connect cultural teachings to health and wellness, intergenerational learning opportunities, and a return to traditional healthy foods.53
In 2016 the American Indian and Alaska Native Cultural Wisdom Declaration was published as part of the Substance Abuse and Mental Health Services Administration’s National Tribal Behavioral Health Agenda.54 Written by several of the authors of this article, this Declaration was inspired by the need to confront the outcomes and impacts that structural racism and health care delivery inequity continue to have within health, educational, and government systems in American Indian and Alaska Native communities.
The Declaration states, “We will integrate authentic cultural interventions alongside existing healthcare promotion efforts to ensure a culturally tailored and culturally relevant approach to health promotion and healthcare delivery for American Indian and Alaska Native people.”54(p5) It is a tool intended to educate structures and systems that continue to make decisions not aligned with US government treaty obligations, creating generational health inequities. It calls on Native and non-Native allies to educate themselves about the reality of structural racism that hinders health and progress in American Indian and Alaska Native communities and calls for support and acceptance of culturally aligned health wisdom and interventions within these communities.
Adopted by tribal leaders and American Indian and Alaska Native health organizations including the National Indian Health Board and the National Congress of American Indians, the Cultural Wisdom Declaration emphasizes that existing wellness approaches in Native communities must receive full support, recognition, and strategic implementation to support the health and well-being of American Indian and Alaska Native communities while accepting and trusting the expertise and wisdom of these communities as experts on their own psychosocial, health, wellness, and environmental needs. To continue to address the impact of structural racism on American Indian and Alaska Native health, we make the following recommendations to the Department of Health and Human Services (HHS) and its partners and vendors.
Indigenous Principles
We recommend using the Cultural Wisdom Declaration as a model for all programs that may affect American Indian and Alaska Native health, such as research and the research review process, public health programming, justice systems, housing, child and family welfare, economics, infrastructure, the environment, and funding and resource distribution. HHS staff should be familiar with the Declaration and ensure that policies, programs, and processes conform with its guidance. In particular, to respect Indigenous principles, the Declaration recommends that agencies “modify…requirements to fit the relevant traditional tribal paradigm or allow room for flexibility when evaluating proposals submitted by American Indian and Alaska Native tribal nations.”54(p6) Standard funding and programming evaluation models can miss the full effects that a tribally specific program has on a community because these evaluation tools are inflexible.
Funding
The Cultural Wisdom Declaration also recommends “provid[ing] adequate time and financial resources required to work in rural and remote areas, with hard to reach populations and within the legal frameworks of sovereign nations.”54(p6) We recommend releasing the constraints on federal funding and policy for American Indian and Alaska Native initiatives. Federal funding is often tied to federal priorities and initiatives, rather than the needs of American Indian and Alaska Native communities. For example, payment disbursements for the Coronavirus Aid, Relief, and Economic Security (CARES) Act of 2020 for tribes were distributed inequitably and arbitrarily, resulting in delays to crucial funding in the early days of the COVID-19 pandemic.19,55 Despite these constraints, American Indian and Alaska Native governments acted more swiftly and decisively than their state and county counterparts to address the COVID-19 public health emergency.19,56 Although American Indian and Alaska Native communities demonstrated their resilience in this effort, this should not be a burden embedded in funding streams. Instead of making American Indian and Alaska Native communities compete for funding focused on very specific programs and outcomes, we suggest funding in the form of block grants or other allocations that give tribes freedom to use funds for their own initiatives.
Traditional Healers
Finally, our traditional healers play a crucial role in maintaining the spiritual, emotional, and physical health in our communities. Even with pandemic-related restrictions on large gatherings and the recommended social distancing measures, healers insisted that ceremonial interventions would not stop and instead found a way to safely offer modified spiritual interventions. Traditional healers have also been crucial in healing generational trauma. However, many funding streams do not allow payment for traditional healers. In compliance with treaties and obligations to American Indian and Alaska Native health care, we call for policies and practices that honor the importance of traditional healers as respected health services providers and a reimbursable expense.
Conclusion
Health disparities have their roots in systemic, racist policies that have generational impacts on American Indian and Alaska Native communities. Removal to remote reservations, genocide, theft of generations of children to boarding schools, and systemic inequities in the health care system have led to intermediate concerns, including lack of clean drinking water, food deserts on American Indian and Alaska Native land, poverty, and isolation. As a result, American Indian and Alaska Native communities experience worse health outcomes than the general US population.
Yet our resilience sees us through. Each trauma, each negative personal experience, is a thread that can be drawn across time connecting first colonist contact to today. Singularly, these threads are no more than a broken rope, or a basket full of holes that our loved ones fall through. But if we take these threads and braid them together, we create something strong and durable. That is the curative value that traditional wisdom, ceremony, and spiritual practices provide. Our intergenerational circle continues through memories, stories, ceremonies, strength, and hope. Practicing our culture is what cures us.
ACKNOWLEDGMENTS
The authors recognize Orlando Trevino and JS Torres, contributors to this article, for producing digital stories on structural racism, using primary and secondary sources (see note 1). This is an open access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt, and build upon this work, for commercial use, provided the original work is properly cited. See https://creativecommons.org/licenses/by/4.0/.
NOTES
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