Betrayed By One of their Own
There's a moment in a film when I start to wonder whether a character is authentic and begin to speculate about the director's inspiration. When I first watched Joseph Sargant’s 1997 film, «Miss Evers’ Boys», that query was hard to rub off. In one scene, a young man lies on a gurney, his face sickened with suspicion. The camera pans to a large syringe with a needle held by a male physician.
Two people stand beside the man lying down, an African American woman—a nurse—lightly caresses his side—and a European American man—a physician—prepares to use the syringe. The man inquires and asks: «Hey, how come that needle is so big? I ain’t never seen a needle that color, Miss Evers.”
The soft-spoken woman responds with an airy tone, «That’s a gold needle.»
He asks, «It’s real gold?» And she swiftly responds, «yeah, ain’t nothing to it.»
The doctor then interjects, «It’s real gold.»
Miss Evers responds, «Ain’t nothin’ too good for the coloreds. Don’t move Willy.»
The physician asks Willy to take a deep breath, and the patient undergoes a spinal tap. Soon, he screams with agony. But he is not alone; there is a waiting room for other African American men. Some are dressed in denim and flannel shirts, while others wear Panama hats. But as soon as they heard Willy’s wails, some men curdled whatever goodwill they had and turned their heads, their gaze perturbed by the sound. Shortly after, the man whimpers and tries to soothe himself with a song, but shortly after, he yelps. The constant flow of Willy’s cries is harrowing, and several men begin to leave the waiting room.
The cinematic performance evokes the raw pain of a man undergoing a spinal tap, a painful procedure where spinal fluid is extracted and eventually tested for neurosyphilis. Although the cinematic feature, «Miss Evers’ Boys», is a fictionalized depiction of a real nurse who worked for a US federal government experiment that targeted African American men. In the film, Eunice is depicted as a woman who provides the men comfort and console. While the film's content has been contested, the spirit of the film is not far from the truth. Beyond the drama is a story of a nurse who worked for a decades-long medical study that misled and coerced other African-Americans to believe they were receiving medical care when they were not. The real-life Miss Evers’ was, in fact, Eunice Verdell Rivers Laurie (Nurse Eunice Rivers), who, for several decades, aided and abetted in one of the protracted unethical medical experiments in the United States. As a public health nurse for the United States Public Health Service, Nurse Rivers recruited nearly three hundred African American men for the United States Public Health Service Study of Untreated Syphilis in the Negro Male, popularly known as the «Tuskegee Study».
The catastrophe of the study was not solely Nurse Rivers’ responsibility, but her involvement shows how identity alone does not lend itself to ethical forms of care. From 1932, when the study began, treatment for syphilis was formidable with toxic reagents, until 1972, when the research ended, medical treatment evolved to include effective antibiotics. Denying these men access to treatment was intentional and had more to do with the ways that medical care is, and continues to be, unequal in the United States.
When the United States Public Health Department set out to understand syphilis among African Americans, the plan was clear: to observe the natural progression of syphilis rather than provide any relief or treatment. The men joined because they were told they had «bad blood», a local term for several ailments, including anemia and fatigue. The participants, primarily working-class Black men, signed up for the study hoping to receive therapeutic benefits. In 1990, when Willy was asked by an interviewer if he had syphilis, Willy described what it meant for him to be in the study once he knew the study’s intentions, «They didn’t tell me nothing like that. They drew my blood. We’ll see you next time, and that’s it.» He was not alone. Most participants are uninformed or unaware that they would be left to continue to get sick rather than receive treatment. The catastrophe isn’t just about how the state harmed the men, but how a working-class Black woman could also be complicit in carrying out medical disregard for men who should have received medication.
Eunice lived between two worlds–the fields and the laboratory. As an African American woman with southern roots, Nurse Eunice Rivers was a broker for the research subjects precisely because her appearance and effect were familiar. Because of their similar identities, she could assuage the fears of African American men to participate in the study. This meant that well after there was an effective treatment for syphilis, Nurse Rivers actively prevented the men in the study from accessing treatment, which ultimately prolonged their morbidity and posed a risk for them transmitting the disease to their partners and children. But as James H. Jones argued in Bad Blood, «Nurse Rivers remained a constant. She was a facilitator, bridging the many barriers from the educational and cultural gap between the physicians and the subjects. Most importantly, the men trusted her.» That trust was built when she drove them to their appointments for the public health study, which by 1953 was «a large new, Government station wagon.» Her association with the US government, or perhaps, the US government’s association with her, legitimized the study in the eyes of the men.
But more than anything, Eunice spoke to the men in a way they understood, with the honeyed air of the south. Often with her hair pulled back and her all too familiar glasses, she would walk with the men in the fields, lined with cotton, at ease and full of esteem. In a 1953 public health journal article where she was the first author, Nurse Rivers and the other authors indicated that some men received cardiograms, other X-rays, and most of them, physical examinations. Despite Nurse Rivers’ affinity with these men, her role in the study was complicated by the moral cloud that hung over them.
The syphilis study relied on a well-oiled machine of public health officials to fund and coordinate the sixty-year long research project. They depended on the Alabama County Public Health Department to maintain the records of the patients, the historically Black university to incorporate African American researchers, and the United States Public Health Service to legitimize the study. But the government was not alone in these matters—private philanthropists supported the pillars of the study. For example, the Milbank Memorial fund—a network that funds health—helped to fund the burial of the research participants «on condition that permission be granted for autopsy.» But primarily, they relied on Nurse Rivers to encourage the necessary participation and engagement of the men in the study.
Meanwhile, Eunice allowed the men to participate by expressing interest in their welfare or by attending funerals. At times, some of the participants were skeptical, but some of the men participated because they were offered services that everyone desperately needed. When he joined the US Public Health Service study in 1932, Herman Shaw, a thirty-year-old farmer, said that he joined because “Every year they would give us a full examination and a free meal.” Like most people, he felt betrayed by the study’s ulterior motives because he was made to feel like “a guinea pig.” For survivors like Shaw, the fact that this study was able to happen for so long was a tragedy, but knowing that it could be carried out by people you considered your kin pricked his conscience.
So why did these men trust her, and what does it say about how marginalized people can also be agents of medical discrimination?
THE FARMER’S DAUGHTER
Eunice Rivers’ social background is not different from that of the men in the study and their families. One of three siblings, she was born in 1899 and raised in the working-class South, precisely in rural Georgia.A typical day for someone who rented and tilled the land involved waking up at dawn. For sharecroppers like her father, it was not enough to wake up early on a crisp morning, hoping for a successful harvest; from one year to the next, the crop was unpredictable.
Given that her family rented a small plot of land without very little left over, the family struggled. At fifteen, Eunice’s mother died. This left the family bereft of another loved one, but also served as a reminder that fewer people were living off the land and that opportunities were fewer. Very little is known about her father, but he encouraged Eunice to study. Believing that education would allow her to move beyond the instability of farming, he pushed her to study nursing, hoping she «wouldn’t have to work in the fields so hard.»
In the early part of her career, in 1926, Rivers worked with the Movable School, a public health initiative that provided sanitation and other health services. Working for the Alabama Bureau of Child Welfare, she helped document African Americans' birth and death rates within the state. They went beyond the cities and visited the cabins of African American farm workers. At the time, Nurse Rivers visited innumerable bedridden people in the rural communities of Alabama by providing direct aid to people in immediate need, especially given that some of these communities lacked adequate hospitals and clinics. They completed simple tasks such as taking their temperature and checking their weight, but in some cases, garnered a compassionate ethos in zones broken by centuries of African American dispossession. «When I go to the house», Eunice recalled, «I accept the house as I find it. I bide my time.» This meant a lot for poor African Americans, whom respectable community members often eschewed. But by the early 1930s, during the beginning of the Great Depression, the mobile clinic ended, and so did her job. When asked by the Black Women Oral History Project why she joined the syphilis study in 1932, Nurse Rivers responded: «I was just interested. I mean, I wanted to get into everything that I possibly could.»
The transition from the mobile clinic, which sought to help the poor, to the syphilis study, which denied medical treatment to the poor, was stark. But this was not the only disparity. The lack of representation of Black nurses in Macon County, where she moved then, was clear. When she was recruited, Eunice Rivers was one of four Black public health nurses in Alabama.
In some ways, her influence was conditional, based on the hierarchies in the medical field of the time, but in other ways she could use her authority to dictate the health outcomes of African American men. When I spoke with historian Susan M. Reverby about Nurse Rivers’ legacy, she remarked that «the Public Health Service didn’t write to Nurse Rivers directly, except when they talk to her», instead, they correspond directly with the physicians who ultimately carried the reins of power. For years, Nurse Rivers campaigned to keep men in the study, even when they were dubious about its effects. The concerns of the men were not unwarranted, especially given that by 1947, when penicillin was widely accepted as an appropriate treatment for syphilis, the United States Public Health Service failed to distribute the remedy to the syphilitic men.
ELITE CAPTURE
Although her role in the study did not entail designing the experiments, Nurse Rivers actively withheld effective medication from the men. The rise and fall of the study were not Nurse Rivers's duty alone. To suggest this would place an undue burden on one Black woman, far beyond the power she could ever possess then, but her position as a liaison galvanized many people to feel at ease with the federal study.
As Susan L. Smith wrote, «Black leaders at Tuskegee endorsed the government study, to the relief of the federal officials, in the belief that it would help the school in its work for African Americans.» Professors Reverby and Smith’s work point out that Eunice did not act alone, nor is she entirely to blame. Although she played a significant role in the study, her distinct position as a working-class African American southern woman also pointed to her vulnerability within the grander scheme of things.
However, whatever people’s view of Eunice, the main delinquent in the study was the US government. They curated and designed the study. But also, some Black-led institutions, from institutions like the Tuskegee Institute and Black physicians such as Dr. Eugene Dibble, helped to facilitate the unethical syphilis study. Overall, these people showed that African American elite or upwardly mobile elite people of marginal communities, when on the periphery of power, can cause harm.
As years passed, however, the research group came to rely on the rapport that Eunice built with these men. While Nurse Eunice Rivers’ role as a nurse was inscribed with the potential to heal, her role was complicated by the social mores of the time. To access these men was not a small feat, Rivers felt comfortable walking alongside them in the cotton fields, in their workplace, and in their homes. She was not just a nurse, asserted scholar Harriet Washington, Nurse Rivers «waited while they visited friends and marveled at the manicured university lawns and the painted shops on the city streets. She listened sympathetically to the litany of sicknesses, deaths, and family woes and helped when she could.»
Nevertheless, the effects of the study are difficult to swallow once the ethics of the study become known.
VICTIM OR VILLAIN?
In 1966, when Peter Buxton initially filed a complaint to Public Health authorities about the syphilis study. Despite his concerns, there was no response. A San Francisco social worker and epidemiologist discovered that several African American men were being denied syphilis treatment, while interviewing them for his work. Two years later, he did it again, and the public health department still took no action. It wasn’t until 1972 when he leaked details to Jean Heller who eventually wrote about the study in The New York Times, that the ethics of the syphilis study would come to national attention. She noted that the men «have gone without medical treatment for the disease and a few have died of its late effects, even though an effective therapy was eventually discovered.»
Within a year of the article’s publication, victims of the study decided to take legal action. On July 24, 1973, Charlie Pollard brought to the federal government in Pollard v. United States under the grounds that «the government exploited the participants in violation of rights guaranteed under the Fifth, Ninth, Thirteenth, and Fourteenth amendments to the Constitution of the United States.» During that trial, Dr. Fred Gray argued that the men had a right to know that the study was not providing them with treatment.
During the lawsuit, Eunice was not called to testify. The controversy irked her, even years after the study, «This is the thing [the critique of the syphilis study] that really hurt me about the unfair publicity. Those people had been given better care than some of us who could afford it.» And for the most part, she avoided the spotlight after it was revealed that she was pivotal to the study. Some critiqued her for complicity, chastising her for betraying the race; others remarked that she had very little power as someone from the lower rungs of the research. Whatever we think of her role in the study, it is clear that its effects have had a detrimental impact on the men, their family, and their descendants. Voices of Our Father’s Legacy, is an advocacy group that centers on the men and the descendants of the men in the syphilis study. They believe that repair isn’t accomplished through compensation alone but «to become an agent that will promote and advocate for ethical treatment in health care.»
Few medical studies have had as much recognition and misunderstanding as the so-called «Tuskegee Syphilis Study», even though the town and its residents have significance far beyond the study. Tuskegee has become a lens for how people perceive African Americans’ relationship to the medical industry, even though, as many of the descendants have noted. Dr. Kimberly N. Carr, whose grandfather, John Goode, was part of the study noted: «Tuskegee is a very sacred place, there is no way you cannot feel history.» She and others have noted that the town is home to the Tuskegee Institute, a historically Black university, and the famed Tuskegee Airmen, volunteers who became America's first African American military pilots.
Most of us occupy what Primo Levi called the grey zone at some point. Most of us occupy enigmatic ethical zones in our lives. In his essay collection, The Drowned and the Saved, the Holocaust survivor Primo Levi had the following to say: «The privileged prisoners were a minority within the larger population, but they represent a potent majority among survivors; even if one does not take into account the hard labor, the beatings, the cold, the illnesses, it must be remembered that the food ration was decisively insufficient even for the most frugal prisoner.» As a Holocaust survivor, Levi pointed to the hierarchies of suffering among Jewish people in the concentration camp; he wanted to highlight the distinction between Jewish people who aligned themselves with positions of power and those who did not. And he argues that complicity within a violent system can often lead the relatively privileged in an oppressed group to survive at more excellent rates than those who are especially oppressed. It can be uncomfortable to charge people with abuse when they might come from a disenfranchised background. Given that Nurse Rivers lived in Jim Crow America in the US South for most of the study, what responsibility did health workers like Nurse Rivers have to ameliorate the health of the participants? But more importantly, as the country was going through its second Civil War, adequately known as the Civil Rights movement, what allegiance did Nurse Rivers have to the men’s humanity?
History is filled with people who occupy this ambiguous space and fall into ethically murky territory. However, even for its time, the USPHS syphilis study did not measure the legal or moral codes of its time. By 1943, the Henderson Act established that the federal government should fund tests and treatments for sexually transmitted diseases. Even within the study context, the men should have been granted treatment. In addition to guaranteeing treatment for sexually transmitted infections, the Nuremberg Code, which barred maleficence in human experimentation and advocated for informed consent, was passed in 1947. Whether it was their failure to provide medical treatment or their refrain from explaining the study's parameters, the USPHS and, by extension—Nurse Eunice Rivers—failed to tend to these Black men.
The tragedy isn’t solely about the study but also the lack of retribution. Near the end of her life, Rivers still didn’t think she had done anything wrong, nor did she think she caused harm. Rivers believed she had neither remorse nor regret: «I don’t have any regrets. You can’t regret doing what you did when you knew you were doing right...I feel I did good in working with people. I know I didn’t mislead anyone.» She believed the men were beyond help and that she was their friend because she had spent time in their homes and workplaces.
Records indicate that by the end of the study, less than ten percent of the men were provided with effective treatment to treat syphilis. The study directly impacted their quality of life as well as that of their families. Of the original nearly four hundred infected men in the study, thirty of them had died of the disease, and one hundred died of related health conditions. But they were not the only ones impacted; about forty of their wives were infected by the disease, and about twenty of their children acquired congenital syphilis.
While many of the men died prematurely, Nurse Rivers lived to eighty-six. Whatever part she thought she was playing within the confines of her life, one thing is sure: she outstripped these men of different possibilities, of being able to live healthy lives, of potentially getting better.
