Overview

My medical training taught me that Black people have a biological tendency toward conditions like diabetes and hypertension, giving rise to differences in treatment and even mortality. There was no mention of the structural racism that creates the conditions in which ill health thrives. 

Reading Time: 8 minutes

CN: Severe racial bias and mistreatment

“You kill Black people. You all kill Black people.”

I heard these words from June, trembling as she emerged from the room on the cancer ward where her daughter had just died. I was stunned. My heart pounded frantically. I didn’t know what to do as she stumbled down the hall. I was the doctor caring for her daughter Susana at the time of her death, so I knew I was included in her indictment but didn’t understand the context. I’d clearly missed something crucial in our months together. 

At the time, I was ignorant of the deep roots of racism in the American medical establishment.

My medical training had taught me that diseases common in Black people, like diabetes and high blood pressure, were the result of race itself—that Black people had a biological tendency toward certain conditions. There was no mention of the structural racism that creates the conditions for ill health to thrive. 

It was just one of many falsehoods and casual omissions conveyed in the course of a medical education.

As recently as 2016, a study showed that trainees wrongly believed that Black people have higher pain thresholds. This misconception continues to lead to the routine undertreatment of pain in this population.

Black patients are also more likely to be labeled “drug seekers” when requesting help for notoriously painful conditions. And concerns leveled by hospitalized Black patients are often minimized, just one factor leading to their increased maternal mortality.

A recent piece in the New England Journal of Medicine showed that Black people were also exposed to higher levels of radiation during X-ray examinations due to the belief that their skin and other tissues were thicker.

Anti-Black bias disproportionately killed non-white Americans. A particularly vivid case involved a 52-year-old doctor named Susan Moore. 

Dr. Moore was struggling to breathe when she video recorded herself from a hospital bed. When her doctor didn’t accept her pleas that she wasn’t well enough to go home, even though she was herself a physician, she was discharged from the hospital and died within days.

Dr. Moore was Black.

YouTube video

When I saw the video, I recalled the terror and grief that erupted from June all those years ago, the widening of her eyes amidst the devastating sense of loss that seemed to signal something beyond the unthinkable pain of losing her daughter: She was scared. I’d missed clues that might have informed how I approached or understood June.

“She can’t die, I hope you know that,” June said at our first visit under the fluorescent cancer center lights, her eyes boring into mine. “You cannot let her die. Do you hear me?”

I didn’t though. I made my own assumptions. She was a grieving mother, a “helicopter mom” of her adult daughter. I was used to sadness and hands-on families in the setting of terminal illness. It came with the territory. I supported them empathetically, compassionately, or thought I did, in the best way I knew how. Susana called me to sit with her sometimes when she had her infusions. She also called me from home when she was in pain. I’d done my job. I’d made a connection with my patient. And I understood that what they were going through was beyond what anyone should ever have to experience. 

And yet, there was something else going on inside June that I didn’t acknowledge, didn’t recognize—and for which I didn’t create the space to emerge.

According to Dr. Rita Charon, the founder of narrative medicine—a field that teaches healthcare workers to attend to those in their care with deep attention and curiosity—we need the skills to “listen to narratives of illness, to understand what they mean, to attain rich and accurate interpretations of these stories, and to grasp the plights of patients in all their complexity.”1 It was part of my job to pick up the clues in body language, and words, and to try to push further if needed, if allowed, to understand the context of feelings that are expressed in the medical encounter. 

Susana was receiving chemotherapy as part of a research protocol, but her disease was so far along that even at that initial visit I knew the chances she’d overcome it were very small. Black patients only account for 5% of those enrolled in clinical trials like Susana’s. These are the kinds of studies that have the potential to provide benefit to patients who access them. But I knew Susana wouldn’t survive no matter what we did. I watched June clutch her daughter’s hand each time we met like she was afraid to let go, even for a moment. But I focused on my patient, on Susana, perhaps because she didn’t challenge me. I told myself I’d done my part, and that June was secondary. I was wrong. 

I now know that decades of history, the kind I was never taught in school and failed to learn on my own, supported June’s concerns that not only was Susana gravely ill, but that she might not be granted the kind of care she was seeking and deserved. June knew that Susana could be treated differently because she was Black.

Admired by the Reich

Even Adolf Hitler took note of the medically-sanctioned abuse and destruction of Black bodies in the US. At the International Military Tribunal at Nuremberg, the German defended themselves by saying their practices during the war were no different than those in America, where prisoners were regularly subjected to involuntary experiments. 

The Nazi doctors were ultimately charged, and the American delegation objected to the comparison. 

From the beginning, Hitler saw our embrace of eugenics, our non-scientific beliefs that certain gene pools are genetically inferior, our Jim Crow laws, and our practice of forced medical experimentation as blueprints and a rationale for German state-sanctioned anti-Semitism and genocide: his “Final Solution.”

American race laws were so well known globally in the early 20th century that Yale historian James Q. Whitman notes, “When the leading Nazi jurists assembled in early June 1934 to debate how to institutionalize racism in the new Third Reich, they began by asking how the Americans did it.”

“For us Germans,” wrote the German press agency Grossdeutcher Pressedienst at the time, “it is especially important to know how one of the biggest states in the world with Nordic stock already has race legislation which is quite comparable to the German Reich.” Hitler was particularly impressed by the ability of the United States to retain its pretense as a moral beacon to the world given the genocide of natives, slavery, lynchings, and strict race laws, saying they had a “knack for maintaining an air of robust innocence in the wake of mass death.”4

Our history of experimentation on slaves, in the prison setting and beyond, is extensive. In Medical Apartheid, Harriett Washington details these practices. In one example, a former slave named John Brown wrote in his memoir about being handed over to a doctor for an experiment on sunstroke:

Hamilton had a deep pit dug, and built a fire in it that he damped so only the burning embers remained; these were retained until the doctor, using a thermometer, ascertained that the pit was sufficiently hot. He then made Brown sit naked on a stool in the pit and covered the opening with a wet blanket to retain the heat. Only Brown’s head was exposed while temperatures routinely exceed one hundred degrees. Hamilton then administered his various heat remedies until, Brown recalls ‘though I tried hard to keep up against its effects, in about half an hour I fainted. I was then lifted out and revived, the Doctor taking note of the degrees of heat when I left the pit.’2

A statue of Dr. Marion Sims, once dubbed the “father of modern gynecology,” stood for decades in Central Park, across from the New York Academy of Medicine, until activists and academics pushed to have it removed in 2018 because Dr. Sims was known to have experimented on female slaves without their consent and without anesthesia. 

At the time of the Nuremberg Trials, American experimentation on and control of Black bodies was part of our history, but also ongoing practice. The forced sterilization of Black women peaked in the 1930s and 1940s. Other medical services were often conditioned on consent to the procedure.3

Even after the Nuremberg Code was created to improve the ethical practice of medicine, its recommendations were not followed in the U.S. Examples of the continuation of inhumane and racist experimentation included the Willowbrook study of hepatitis transmission in mentally ill children, the Tuskegee Syphilis Study, and Fernald State School trials using radioactive minerals in impaired children, among many others.

Buck vs. Bell, the law that approved the forced sterilization of the “feebleminded,” which passed in the Supreme Court in 1927, was not ended until the 1970s. Madison Grant, a leading eugenicist, advocated for forced sterilization, and for quarantine of those whom he referred to as “inferior stocks,” “weak or unfit.” His description included “worthless race types.”4

It wasn’t until the Belmont Report of 1974 and the passage of the National Research Act that three fundamental ethical principles were created for human-subject research in America: Respect — for the protection of autonomy and privacy rights of participants. Beneficence —the need for researchers to have the welfare of participants as a goal of any study. And Justice —the fair distribution, among persons and groups, of the costs and benefits of the research.

The birth of whiteness

But despite decades of attempting to enshrine laws that prevent medical abuse, we continue to see disparities in how medicine is researched and practiced resulting in poorer outcomes and more suffering for non-white patients. As Resmaa Menakem, therapist and trauma specialist, says: “Only the white body is fully human…and only the white body is inherently pure and virtuous…At the bottom are Black and Indigenous bodies.”5 Menakem talks about the virus of “white-body supremacy” that was let loose in the American colonies in 1691 with the passage in Virginia of “An act for suppressing outlying slaves,” which included the first documented use in the colonies of the word “white” as a racial category.

For Menakem, the answer to white-body supremacy is “somatic abolitionism,” an embodied anti-racist way of being that allows all people to honor and resonate with all other humans. Menakem graciously allows that oppressors are also acting from a place of trauma, historical or otherwise, and advocates for the collective healing of the pain that underlies the need to dominate and abuse others, but he also notes in The Quaking of America that we live in extreme times where civil rights are threatened. In addition to the internal work to heal, he also stresses the importance of anti-racist activism.

Without confronting the societal racism that exists in unfair housing practices, employment, earnings, benefits, credit, media, and criminal justice, (not to mention the fundamental right of access to the vote) and connecting these root causes to health disparities, we will not have equity in healthcare, or anywhere. 

And less access to fresh food, more contact with toxins, and higher levels of everyday stress lead Black Americans to have more chronic diseases and face earlier deaths.

Dr. Sayantani DasGupta calls for “abolition medicine.” Like Menakem, she uses the word “abolition,” with its echoes of the ending of slavery, to emphasize the need to squash beliefs and practices that endanger Black people. In her words, we need to “reimagin(e) the work of medicine altogether as an anti-racist practice. Abolition medicine means challenging race-based diagnostic tools and treatment guidelines that reinforce antiquated and scientifically inaccurate notions of biological race. It means integrating longitudinal anti-racist training into medical education, including the history of racism in medicine and structural factors that produce racial health disparities, while actively recruiting, retaining, and supporting Black and other minoritised faculty, staff, and students.”6

Added to those systemic changes, healthcare providers must be taught how to take in patient’s stories from a stance of narrative humility; inviting into the room not only the facts of a disease, but also all of the experiences that lead to the fear, the dread, and the distrust, that some patients have when facing Medicine. Without this approach to inform our practice —one that tells us there is so much we don’t, and can’t, understand until we pay attention, and deeply listen — we won’t face the truths that led us to where we are, or truly break down the barriers that obstruct unbiased human connection and ethical healthcare. 

June knew things I didn’t. June had every right to be fearful about the kind of care her daughter might receive. It was my job to find that out. 


NOTES

1Charon, R.(2006). Narrative Medicine: Honoring the Stories of Illness. New York. NY: Oxford University Press. Page 3.

2Washington, HA. (2006). Medical Apartheid.New York, NY: Random House. Page 53. 

3Roberts, D.(1997,2017). Killing the Black Body. New York and Canada: Vintage Books. Page 176.

4Wilkerson, I. (2020). Caste. New York, NY: Random House. Page 80-1.

5Menakem, R. (2022). The Quaking of America: Las Vegas, Nevada: Central Recovery Press. Page xi.

6DasGupta, Sayantani. The art of Medicine: Abolition Medicine. July 18, 2020. P 159. 

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Eve Louise Makoff is an internal medicine and palliative care physician. She has published both personal and medicine related essays and poetry. She is working on her master’s degree at USC-Keck school...