Poor health is not inherently a part of Black Americans’ bodies; poor health is not in our DNA. But as Linda Villarosa says in Under the Skin “something about being Black has led to the documented poor health of Black Americans.”Footnote 1 Like many other scholars of Black health have said, Villarosa proposes, and evidence supports, that “the something is racism.”Footnote 2 Villarosa attributes Black people’s generally inferior health outcomes in areas like pregnancy and birth, pain care, and cardiology to racism and not a lack of social resources such as money, education, and access to healthcare. Although not always explicitly stated in her text, the stories Villarosa uses to illustrate racism’s effects on health also demonstrate racism’s influence on who has access to the social resources that are needed to maintain health and treat illnesses. Villarosa is right that more education and more income cannot de facto give Black people better health. At the same time, we cannot ignore that although racism is the force, education, money, housing, and access to healthcare are the means by which racism adversely affects health. Education and other social goods only fail to confer better health to Black people because racism serves as a roadblock.
To demonstrate her argument, Villarosa relies primarily on the powerful, enraging, and often heartbreaking accounts of Black people whose health and well-being were directly impacted by racism. For example, Villarosa tells the story of the Relf sisters who were sterilized by public health officials when they were children without their parents’ or their own knowledge or consent. Villarosa’s stories reveal the glaring ways that interpersonal racism and institutional racism in American healthcare have been, and continue to be, gratuitous perpetrators of racism contributing to the overall poorer health outcomes and mortality of Black people.
Villarosa’s methodology reveals the human toll of racism that is so often forgotten when we discuss Black people’s health. Where others have failed to speak of them as fully complex humans worthy of safe and compassionate healthcare, Villarosa succeeds at showing the full range of Black humanity and how racism disrupts their ability to live full lives. However, a balance needs to be found between individual stories that show the human side of racism’s effects on health, and, simultaneously, keeping at the forefront the systemic problems that sustain racism as a major social determinant of health for a large population of people.
In this essay, I give a critical analysis of Villarosa’s use of a narrative methodology to convey racism’s deep-seated effects on Black health. Villarosa’s use of stories stands out as an effective method of connecting racism with healthcare institutions’ failure to treat this population as people fully worthy of compassion. This connection further reveals the legacy that racism leaves not only in individuals’ lives, but also the legacy it leaves in all Black people’s relationship with healthcare. With each story, however, while Villarosa powerfully makes it clear that racism is a barrier to their access to health and wellbeing, she does not adequately acknowledge the historical context in which Black people live and seek care in America. Additionally, Villarosa does not sufficiently acknowledge racism’s effects on Black people’s access to the social determinants of health such as adequate income and housing, which also impact health.
A Story of Eugenics: Katie, Minne Lee, and Mary Alice Relf
When Jessie Bly, a 30-year-old Black social worker, met the Relf family in 1972, the mother, father, and three daughters (Katie, Minnie Lee, and Mary Alice) were living in a field in Montgomery, Alabama. From Bly’s perspective, they were living as squatters, in a shelter built from cardboard boxes, with no running water or electricity. She eventually helped set the family up with welfare benefits such as food stamps, subsidized housing, and other financial assistance. The youngest child, Mary Alice, also received healthcare for her physical and intellectual disabilities.
In hindsight, it is this help that Bly believes put the three young girls on the radar of the U.S. government’s family planning program. Katie, the oldest daughter at age 15, then preteen Mary Alice and Minnie Lee were all given the experimental, not yet approved by the Food and Drug Administration (FDA) for adults, contraceptive shot, Depo-Provera. Neither of their parents were consulted nor were the purpose and effects of the shots explained to anyone. Villarosa notes that a member of the staff who administered the shots said that she was worried that “boys are hanging around the house and we don’t want no more of their kind”Footnote 3 even though there was no evidence of the girls’ being sexually active. When Katie was 17, she received an intrauterine device (IUD) at the Family Planning Clinic, only after the FDA ended the clinical trials for Depo-Provera when its link to cancer was shown in animals. Again, her parents were not consulted.
Months after Katie received an IUD, two nurses from the Family Planning program came to the Relf home and drove Minnie Lee, Mary Alice, and their mother to a doctor’s office for what they were told would be more shots. The Relfs were then driven to a hospital where the mother was asked to sign consent forms, despite her lack of literacy. Although it is unclear what their mother understood regarding the treatment to which she was consenting, it is very clear that she did not think she was signing the consent for her daughters’ sterilization. The nurses returned to the home for Katie but she refused to go with them. The next day Bly and Katie went to the hospital where the youngest Relf sisters had just undergone sterilization surgery.
Whereas Villarosa acknowledges that at one time she believed that Black health was the result of Black people’s own bad choices, she now recognizes the political and social influences on their health. This includes the lengths gone to by White physicians and public health officials to maintain a narrative of White supremacy and Black inferiority. But as is apparent in Villarosa’s expanded retelling of the Relf story, one of the most well-known in the history of Black health, as to how they were violated, misled, and their ability to give birth destroyed, their experience is not ancient history. It reflects a larger reality of the dehumanization, degradation, and disenfranchisement by American institutions, such as healthcare systems, that have long, justifiably, shaped Black people’s negative attitudes toward many institutions, including medical care, law, housing, and education.
For example, when the violence against the Relfs was exposed, it was also revealed in a later court case that the U.S. Department of Health, Education, and Welfare had funded the sterilization of 100,000 to 150,000 women and girls from low-income backgrounds who benefited from welfare programs, half of whom were Black. But state-sponsored sterilization programs for poor and Black people did not stop there. Between 1997 and 2003 and 2006 and 2010, approximately 14,000 primarily Black women were sterilized, while being held in the California state prison system.Footnote 4 , Footnote 5 These women were often intentionally told they had diseases requiring sterilization when this was not the case; in other cases, following birth, they were subjected to hysterectomies without their knowledge.
The Relf sisters and the women prisoners in California demonstrate that eugenics has been a fixture in Black women’s relationship with the government and public health organizations. The belief that Black women either could not, or would not, take care of their children because they were either intellectually incapable or immoral, fueled the belief that Black women should not procreate.Footnote 6 Additionally, the belief that Black people—particularly the poor—should not give birth to children they cannot care for, has also encouraged eugenic programs like those forced upon the Relf sisters. As Villarosa states, the U.S. government, along with the nurses, and physicians involved in sterilizing the sisters believed it best to be proactive, and end any possibility of procreation, avoiding the inevitability of children who would have to be financially cared for by the state. Their actions were supported by long-standing stereotypes of Black females as sexually insatiable and fertile.
Stories like those of the Relf sisters have the power to illustrate cruel and disturbing topics, particularly to readers who may be unfamiliar with the context of Black health. However, if not used properly they can also harm the goal of bringing attention to issues of racism. Elsewhere, I have proposed specific goals as a way to evaluate narrative methodology.
In “Going Beyond the Data: Using Testimonies to Humanize Pedagogy on Black Health,”Footnote 7 I identify three necessary characteristics of using stories from Black people to illustrate harms caused to their health because of their race. Specifically, I advocate for (1) centering patients, not their illness or clinician; (2) situating Black patients’ experiences within the racism they experience; and (3) avoiding blaming Black people for their poor health. These three criteria are meant to ensure that their stories are not seen as something that happened to a single individual only, but in a larger context as part of systemic racism in American healthcare, and society more broadly. Additionally, these criteria are meant to make sure the subjects of the story remain the focus and that the stories remain their own and are not reduced to an unidentified account for public consumption.
Villarosa successfully meets some of the above expectations, while she does not meet other expectations.
Villarosa is, as acknowledged, a great storyteller. She shows the humanity of the Relf sisters and the depth of the cruelty they endured, solely because they are Black women. Because she conducted personal conversations with the women, she is able to offer an insight into their lives and experiences that is rare. Usually, in other accounts, much of their story comes to a stop after their sterilization and the initiation of their federal legal case. Rarely do we “see” them as they are now and how the violence they endured continues to affect their sense of self. Villarosa showing us the Relf sisters now in the 21st century adds a new layer to their story and forces us to change the way the heinous acts they endured are usually discussed within our academic circles. Villarosa does an excellent job of keeping the Relf sisters at the center of their story and at the center of our scholarship on medical racism.
Villarosa also does an admirable job describing why historical and contemporary instances of sterilization ought to matter to our views on Black people’s relationship to racism and healthcare. However, I believe her research would have benefited from more acknowledgment of historical injustices and just how far the insidious nature of racism can seep into the cracks of all parts of our lives. Instead, Villarosa focuses her attention on how interpersonal racism led to the Relfs’ sterilization. There is some mention of institutional racism via her description of the government programs that funded sterilization, but when situating Black stories within the context of racism, we must also acknowledge that racism affects where people live, how they live, and with whom they live. All these factors take a toll on people’s health and are particularly apparent in accounts of Black health.
Obstetric Violence and the Social Determinants of Health
The Relfs’ story is only part of a much larger picture of government interest in Black women’s bodies. Government-sponsored obstetric violence against Black women dates back to when the first women from Africa were brought to the shores of the United States and their reproductive lives were forcibly controlled by White people. What the Relf sisters suffered, along with the Black women in the California prison system, is a part of Black women’s collective story in America. It is not isolated and, unfortunately, though abhorrent, not unique. Black women have traditionally had to endure race and gender-based violence. And Black women continue to be subjected to obstetric violence and inequality as evidenced by racial disparities in maternal mortality rates. This can be seen in sharp relief in the stories of Black women who died preventable deaths during or soon after giving birth. Shalon Irving, a CDC epidemiologist is one such person whose poor health was ignored after giving birth, ultimately contributing to her death at age 36.Footnote 8 Because of stories like Irving’s, we must confront not only the reality of the history of Black women’s health, but also put it in proper context by acknowledging that it is but one part of Black women’s stories in America.
Although Villarosa’s retelling of the Relfs’ history mentions some of the essential social determinants of healthcare, other ongoing challenges they face are notably in their absence: adverse childhood experiences, adequate income, education, and literacy, proper housing, access to transportation and healthcare, and the burden of discrimination. Additionally, in the 1970s, America was still reeling from huge civil rights movements, and Black people were still actively fighting for basic rights and racial stability, making social stability another social determinant of health relevant to their story and our understanding of how racism impacted their health.
For example, the Relfs lived in extreme poverty and needed the intervention of a social worker and state-sponsored welfare programs to have a decent home, food, income, and access to healthcare. Even after they were forcibly sterilized and their 1973 federal court case, Relf v. Weinbeger, initiated laws and policies against forced and coerced sterilizations, their suit was thrown out of the courts in 1977.Footnote 9 The Relfs received no monetary settlement and no damages were recouped. Even when other victims of forced sterilization received compensation, the Relfs did not. Neither Mary Alice nor Minnie Lee Relf finished high school. Mary Alice spent time in foster care and, after the death of their parents, in many ways, the sisters had to care for themselves.
Black people continue to have lesser access to social determinants of health when compared to other populations. In particular, Black women continue to experience high rates of housing insecurityFootnote 10 and make less income than White people even after controlling for education, credentials, and experience.Footnote 11 This is another instance of how access to the social goods needed for well-being fall along racial lines due to the racism that continues to permeate our social systems.
The intersection between social determinants of health and racism plays a major role in Black health in America. The toxic impact it has on the lives of Black Americans makes it deserving of prominence in any story or explanation of how racism affects health and well-being. Without a proper discussion of social determinants of health, stories of racism and health risk being seen as isolated issues or some self-inflicted injury that Black people brought upon themselves. When done appropriately, a benefit of stories using a narrative methodology is that they can be tools of pedagogy, of social change, and a way to speak to people outside of our own health circles. The stories in Under the Skin have the power to accomplish this when they are properly centered in relation to the social determinants of health.
Conclusion
The Relfs’ story is as much about targeted violent acts as it is about passive racism. Racism did not begin to affect their lives when the social worker entered their unsafe home; racism affected their lives even before their births. Therefore, when narrating Black people’s lives and racism’s impact on their health and well-being, it behooves us to tell the complete and broader story. We must share their experiences within the context of history and their lack of access to the social determinants of health to demonstrate that there are many other Relfs in America with the same story. When we tell Black people’s stories, we take on the responsibility to tell them with empathy and fairness. People who share their stories are already being courageously vulnerable and open themselves to criticism from those who may not believe in the value of their experiences. In that respect, we have to take extra care to ensure that the stories are treated with respect and the storytellers protected. In articulating what stories mean for the Black experience in America, Villarosa provides the proper deference to the stories in her book. However, when we as storytellers are drawing our own broader connections about their stories, justly telling their stories means telling the whole story—past and present, social and political. Because after all, the story of being Black and ill in America includes all these things.
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