Written by Elise Prehoda ’24, Sheridan Finnie ’22 and Mialovena Exume ’24
The Social Justice Coalition (SJC) at the University of Vermont Larner College of Medicine is a medical student leadership group committed to identifying, disrupting, and dismantling systemic racism within our various communities, in particular, medical education. SJC seeks to work toward the creation of a “cohort of future physicians who understand the underlying social causes of disease in a diverse and globalized patient population…[and] establish, from day one, that health education cannot be separated from history, compassion, and justice.”
Acknowledging that the disruption and dismantling of systemic racism is a task that must involve all members of society, SJC created a book club aimed at supporting “self-education, open dialogue, and critical thinking” among members of the UVM Larner Med community, including faculty, staff, graduate students, and medical students.
In January, the SJC Book Club met to discuss Harriet A. Washington’s book, Medical Apartheid. Below, three members of SJC who partook in the conversation share their responses to prompts discussed during the meeting.
South African anti-apartheid human activist, Desmond Tutu once said, “If you are neutral in situations of injustice, you have chosen the side of the oppressor.” His words ring as true in light of medical injustices against Black Americans as they did during anti-apartheid movements in mid to late 20th century South Africa. Celebrating medical achievements made as a direct result of injustice is a grave affront to all those who sacrificed their lives and livelihoods, unwillingly, in the name of medicine. Activism in the face of injustice is not a one-time event. It is not a point on a timeline, but a continuity of advocacy. Refusal to acknowledge a past rooted in egregious human rights violations does not instill trust in those violated and the descendants of those violated, but further perpetuates the cycle of disbelief and alienation that drives mistrust of the medical system. Simply put, one cannot reconcile centuries of injustice by sweeping it under the carpet.
A radical change in medical education must occur. Education on racism and the history of racism in medicine should not be ancillary, but rather a core aspect of curriculum. Medicine and racism in America have been interwoven for centuries, and the consequences of that intersectionality are readily seen today. For example, black women, the targets of sadistic advances in obstetrics and gynecology in antebellum America, are on average three times more likely to die from pregnancy related causes today. This, combined with the fact that most of these pregnancy-related deaths are preventable, is glaring evidence of the shortcomings in medical education on social determinants of health and anti-racism.
The American Medical Association claims to be invested in fighting bias and institutionalized racism in healthcare. Despite this, Black student enrollment in medical schools has plateaued for decades, even decreasing among black men. Diversity, equity and inclusion programs have seen some of the largest budget cuts in the wake of the COVID-19 pandemic, though the pandemic has most severely impacted people of color, and medical racism continues to run rampant. Curriculum and education follow exam, and when exams such as USMLE focus on memorizing small factoids, mechanisms of action, and vocabulary recall, students and institutions feel there is “no room” for social drivers of disease and the historical racism that brought these determinants to fruition. It is past time the AMA reevaluates what they prioritize in medical education, and that reevaluation begins with a conversation. Mia, Sheridan, and I hope this blog can help to start that conversation, and we encourage you to further your own education on the intersectionality of medicine and racism.
How can we reconcile the medical advances made by James Marion Sims with the degrading methods used to achieve these advances? As Washington puts it, Sims is a “savior and sadist”: revered as a women’s benefactor despite conducting nightmarish experiments on women without consent or anesthesia.
Sheridan Finnie: The term “reconcile” connotates a need to make two or more entities consistent or congruous. I contend that the goal is not reconciliation alone but truth-telling as the necessary antecedent of moving towards any meaningful reconciliation As Elise discusses, Washington’s core premise is that “historical silence is a grave omission” and any efforts to improve the health of black Americans is futile without understanding the legacy of racism, experimentation, and medical abuse perpetrated throughout history. While it is true that Sim’s deplorable experimentation advanced the field of gynecology, this in no way confers morality on or justifies his actions. Washington describes the violation of the principle of distributive justice, in that the distribution of who benefited and who was harmed from his experimentation was inequitable. This is presented as one of the logical arguments for the immorality of Sim’s actions—though the immorality is clear even without such argumentation.
To me, Sims is a perfect example of the two, contrasting faces so many of our historical figures embody: Violent, dismissive, and sadistic in interactions and attitudes to people of color (POC) and obsequious and revered by those in the historically privileged white American caste. The removal of statues of racist figures demonstrates a starting point for holding both realities of Sims’ legacy in our minds. We can conceive of the medical advances Sims contributed while simultaneously removing the reverence. Only then can we advance towards intentional truth-telling of the atrocities he perpetuated.
I would be errant in answering this question without addressing the role of power and control in Sims’ story—and the stories of so many other sadistic experiments documented in this book. Sims’ practice of addicting his slaves to morphine as a strategy for extracting control and reducing their resistance to repeated experimentation stands out as uniquely dehumanizing—in the setting of rampant dehumanization. He desired total control, regardless of consequences. In the medical profession, we as providers often desire elimination of uncertainty and strive towards control. The lesson here is clear. Control is not the desired outcome we must strive for, but instead empathy and justice.
Washington details persistent myths that influence how we remember and understand the Tuskegee Syphilis Study. How does popular media shape cultural memory of historical events and what is its role in disseminating information (both accurate and inaccurate)?
Mialovena Exume: Popular media can serve as a vessel for truth but more often than not these truths are one sided and fail to address all aspects of historical events. One prominent example that comes to mind is the way that P.T. Barnum is portrayed in popular media. “The Greatest Showman” is a captivating movie filled with unforgettable musical ensembles that portray P.T. Barnum as innovator and champion for people who were different and not accepted by society. In reality, P.T. Barnum was a violent racist who purchased slaves and exploited them for profit. However, unless you do your own research you’ll only know P.T. Barnum as the great talented man who revolutionized the idea of the circus because that’s what the media has chosen to depict and purposefully omit. In the same manner, popular media has portrayed the Tuskegee Syphilis Study as the main attribute for African American’s medical reluctance. This study was undoubtedly malicious, but to omit all of the other incidents that result in iatrophobia -fear of doctors – is harmful. It makes it seem like injustices towards Black bodies were rare, when the reality is far from that. Popular media does a great job of mitigating injustices and historical events. In doing so, it continues to instill mistrust and disseminate misinformation about oppressive episodes in history.
What ethical considerations come to mind when Washington describes various schemes to pay minimal sums to or coercing incarcerated persons for their involvement in experiments? How does the concept of “free consent” play into these considerations?
Sheridan Finnie: The ethical principles of autonomy and justice are clearly violated in the coercing of incarcerated persons for medical research experimentation. Medical bioethics is supposedly governed by four ethical principles, including self-determination and fairness. Free consent was and remains a chimera in the American prison system. The coercion of prisoners to participate in egregious medical research, particularly when the subjects were African Americans, is undergirded by lack of information and lack of transparency. The blatant disregard of many American physicians, researchers, and institutions to follow internationally agreed upon tenets that were enacted to prohibit the violation of prisoners’ human rights points to a larger problem in the American medical system: A belief in being above the law.
A major theme in Washington’s book is the stigma that comes with various illnesses and diseases, and the arising of that stigma from a history of racism. A striking quote states, “What’s more, blacks are also frequently presented as vectors of disease, posing a threat of infection to whites.” What diseases, prevalent today, can you think of that carry such a stigma with them? How does race influence this stigma?
Elise Prehoda: The idea of Black individuals presenting as “vectors of disease” is one that has been unchecked for centuries. Whether it be syphilis, HIV/AIDS, or drug use (leading to the grossly disproportionate “war on drugs”), the trend is consistent. Black individuals mischaracterized as vectors of disease leads to lack of treatment, worse health outcomes, and greater distrust in the medical community. In 21st century America, diseases such as syphilis have been cured, and stigma related to HIV/AIDS is finally decreasing. We now have entered a new world of disease stigma, with the “disease” in question being mental illness. Although Black Americans are as likely to experience mental illness as the general US population, the disparities in quality of and access to care are striking.
While factors such as stigma, cost, lack of time, and poor access to mental health services are partially to blame, the century old misnomer of “vectors of disease” plays almost as great a role now in Black Americans lack of access to psychiatric care. A recent study by the Treatment Advocacy Center suggests that 1 in 4 individuals subjected to lethal force by law enforcement were experiencing a mental crisis. Despite only comprising 13 percent of the population, the same study suggests that Black men are at a much higher risk of being subjected to lethal force in the setting of mental health crisis, whereas white men were more likely to receive mental health assistance. This disproportionate response to Black mental health extends far beyond policing, into education, healthcare, and the legislative allocation of resources and support, perpetuating further mistrust. The cycle of mischaracterizing black individuals as vectors of disease must be broken if this trust is to be restored.
How does historical mistreatment of Black individuals contribute to distrust of research today? How can you improve trust using the principles of informed consent, subject education, and research ethics?
Mialovena Exume: I recently saw a quote by Dr. Paz: “Let’s stop saying ‘The Black community’s distrust of the medical community’ and instead let’s start saying ‘The medical community’s violation of trust in the Black community.’ Why? Because the latter puts the ownness of the issue on the medical community where it rightfully belongs.” As a Black woman, I can attest to the fact that iatrophobia is very difficult to overcome because it is founded on so many true and terrible abuses targeted at Black bodies by doctors, researchers and the government. It is even more pervasive because of the way that history and media tell a one-sided story that invalidates the fears and mistrust of Black individuals. This is even more evident today in the apprehension and lack of accessibility that individuals in Black communities have in getting the COVID-19 vaccine. Government, medical institutions and researchers need to earn back the trust of Black individuals, and education systems must continue to shed light on past and current injustices.