Few of us realize that racism is man’s gravest threat to man, the maximum of hatred for a minimum of reason, the maximum of cruelty for a minimum of thinking. [1]
— Abraham Joshua Heschel
One day a patient was admitted to me through the emergency room of the Dallas hospital where I was an internal medicine physician and chief of staff. She was a black female in her early twenties. She had come to the ER alone, unaccompanied by family members or friends. The ER physician who examined her phoned me and said ominously, “You’re not going to believe this.” He described how she had a large, ulcerated, necrotic lesion in one breast. This fist-sized, painful mass was covered with a flimsy gauze bandage that was soaked in pus. The stench from the lesion was so strong it permeated the ER. The obvious question was: Why had she waited so long to seek attention for what was apparently a far-advanced breast cancer?
On admission to a hospital room, an attentive, experienced RN interviewed her and helped her settle comfortably in bed. About an hour later, I made my way to her room to further interview and examine her, but when I arrived her bed was empty and she was nowhere in sight. I asked the nurses where she was, and no one knew. She had apparently fled the hospital surreptitiously on her own volition — AMA, against medical advice. She did not return. I never met her, and I never knew what happened to her after her disappearance.
I do know that this young African-American woman was treated with kindness and concern by the ER staff and the nurse who handled her admission. They all were impressed by the seriousness of her problem, and they did their best to smooth her entry into the impersonal world of a modern, high-tech hospital. All these individuals remarked about her silence and stoicism. The admitting nurse said she appeared to be “scared to death.”
People delay seeking medical and surgical help for a variety of reasons. Some are in denial that a problem exists. Others are wary of the therapy that might be recommended. Others dislike modern medicine in general and doctors in particular. Some stay away because of costs they cannot afford. I have no way of knowing for certain which of these reasons, if any, accounted for why my patient fled the hospital. But as a young black woman, I suspect she was dealing with racially-tinged concerns that our white-dominated medical, nursing, and healthcare teams have been slow to acknowledge.
THREE PERCENT
John Hoberman, professor and chair of Germanic Studies at the University of Texas at Austin, is the author of Black and Blue: The Origins and Consequences of Medical Racism,[2] an examination of how physicians’ racial fantasies and misinformation distort diagnoses and treatments. He writes:
African-American discomfort with and estrangement from the medical profession has been a fundamental part of the black experience for generations. For many African Americans, doctor avoidance has become chronic, dysfunctional behavior. This estrangement results from the racist views and behaviors of white doctors, which has left a poisonous legacy among an abused and under-educated black population.[3]
I am pretty sure that my non-encounter with the young African-American woman, who bolted from the hospital taking her life-threatening illness with her, was a result of the disaffection Hoberman describes, and the doctor avoidance to which it leads.
It is difficult for blacks to find physicians of their own race to whom they feel they can relate; there simply aren’t enough black doctors to go around. While black Americans comprise 13 percent of the US population, African-American physicians constitute only about 3 percent of American doctors, “[and they] occupy a marginalized position within the profession,” says Hoberman.3,[4] If black doctors are marginalized, it’s a cinch their patients feel marginalized as well.
BIAS CONFIRMED
It has been my experience that white physicians don’t take kindly to the possibility that they are racially prejudiced, yet many studies confirm the existence of racial biases.
Several studies show that white doctors are reluctant to give black patients strong doses of pain medication.[5] A 2012 University of Washington study found that pediatricians who harbored a pro-white bias were more inclined to give black patients who had undergone surgical procedures ibuprofen instead of the more potent medication oxycodone.[6] Another study in 2011 from Connecticut Children’s Medical Center in Hartford found that physicians were less likely to monitor the pain of black children with sickle cell anemia than white children with fractures.[7] Similarly, a 2007 study from the Medical College of Wisconsin and Johns Hopkins University found that race, along with gender and insurance, were factors in providing electrocardiograms, chest X-rays, and cardiac rhythm and oxygen-saturation monitoring in patients presenting with chest pain, with African-American men up to 30 percent less likely to receive diagnostic tests than others.[8] Likewise, a 2010 study from the University of Michigan Medical School found that black patients and women referred to a pain specialty clinic were taking only half the number of pain medications compared with white patients.[9] In sum, the evidence is abundant that racial bias exists in medicine, and that it affects the quality of care that black patients obtain.
UNCONSCIOUS BIAS
Most medical racism appears to be unconscious and outside of physicians’ awareness. In fact, most physicians believe medical racism does not exist in themselves, but is someone else’s failing. They are likely wrong.
Lisa A. Cooper, MD, MPH, a professor in the Division of General Internal Medicine at the Johns Hopkins University School of Medicine, and her colleagues sought to understand why minorities don’t receive the same quality of healthcare as whites in the United States. Cooper explains, “I’ve been interested in the extent to which that is accounted for by the fact that a lot of minorities see physicians who are different from them culturally and racially, and that there might be some problems with cultural misunderstandings or miscommunication.”[10] Cooper and her team demonstrated that two-thirds of doctors harbor unconscious racial bias toward patients.[11] “As physicians, we like to believe that we are not biased, and on a conscious level, we’re not,” she said. “But I want people to realize that unconscious biases exist and can have a negative effect on how we interact with patients.”[12]
Cooper and her colleagues assessed health professionals’ unconscious attitudes about race using two versions of the computer-based Implicit Association Test. This tool measures how quickly a subject associates good or bad words with people from each race. If an individual is quicker at associating the good words with a particular race, that person is considered to have a subconscious preference toward that race.
In a variation of this test, physicians assigned to each race words representing medical compliance and reluctance. The researchers also analyzed the audio recordings of doctor-patient interactions, and issued patients a questionnaire after their appointment.
Doctors who unconsciously thought blacks are less likely to be compliant than whites had longer office visits with black patients and spoke more slowly to them, the study found. As a result, black patients reported lower levels of trust and confidence in such physicians. They felt that the physician was condescending and patronizing, and that they were being lectured to.11, [13]
Overall, the study revealed that the doctors had a moderate implicit bias against blacks and more strongly associated compliance with whites. This finding was perhaps most surprising to the doctors themselves, who thought they harbored no preference for whites over blacks.[14]
IS RACIAL BIAS RACISM?
Interestingly, Cooper does not consider this as evidence of racism on the part of the health professionals she and her colleagues studied. “These doctors work in the inner city [of Baltimore], for the most part,” she observed, “and are interested in providing care to minority and socially disadvantaged patients, so these doctors are not racist. They’re not people who consciously have negative attitudes towards minorities.”10 For Cooper, unconscious bias is not the same as ill intent. Her opinion is supported by the fact that many of the doctors in her study said they were grateful to learn that unconscious bias affected their behavior toward black patients, and they resolved to make amends accordingly.14
Author Hoberman, mentioned above, takes a stronger view. He says, “Mainstream American medicine has absorbed traditional racial stereotypes about African Americans and produced misguided interpretations of black children, elderly black people, black athletes, black pain thresholds and other aspects of black minds and bodies.”[15]
The extent to which racism has seeped into modern medicine remains a matter of intense debate. The American Journal of Public Health recently devoted a special theme issue to racial and ethnic disparities in access to care, receipt of treatment, health status, and health outcomes.[16] The editors state, “Both overt and more subtle and indirect expressions of personal prejudice and racial/ethnic discrimination remain prevalent in the general US community.” But because racism has been placed squarely in the legal spotlight, our society on the whole is no longer openly supportive of discrimination against racial and ethnic minorities.
As with smoking, considerable opprobrium is now attached to racists and racism. This does not mean that racism has disappeared in medicine, but that it has morphed into forms that can be more readily justified, such as the assignment to certain racial/ethnic minorities of characterological defects, lack of education, and refusal in compliance— all of which can camouflage racial prejudice and bias on the part of a healthcare provider.[17]
The entire public expression of racism has evolved. The most common picture of racial prejudice is no longer gun racks in pickups or attack dogs let loose on black demonstrators, but what Eduardo Bonilla-Silva, professor sociology at Duke University, calls “racism without racists.” In his view, many whites in contemporary society have learned to mask their prejudice by responding to racially-charged questions and situations in veiled language and subtle behaviors.[18] The veil is so efficient that it can shield the awareness of racial bias even from the individual possessing it, as Cooper discovered in her demonstration of implicit prejudice in the physicians she studied.
As a result of increasing legal opposition to racism, some insist that discrimination is no longer a problem in the United States, but the majority of Americans, when polled, do not see it that way. In a 2008 nationwide Gallup Poll, 56% of those surveyed agreed that racism against African Americans was widespread. Data from the National Latino and Asian American Study show that 30% of Latinos perceived that they had been discriminated against.[19] In 2008 the United Nations Committee on the Elimination of Racial Discrimination (CERD) urged then President George W. Bush’s administration to “take effective actions to end racist practices against minorities in the United States in areas of criminal justice, housing, healthcare and education” [emphasis added].[20]
THE IVORY TOWER
Unfortunately, biases, stereotypes and prejudices prevalent in the general community are unlikely to be held at bay at the doors of our medical or other institutions.16
— American Journal of Public Health, 2012
The term “ivory tower” has long referred to the rarefied academic world of the university. “Ivory” also connotes “white,” implying that racism and academia might be linked. Sometimes the linkage is shocking.
In 2012 Dr. Christian Head, an African-American head and neck surgeon at UCLA Medical Center, filed a racial discrimination lawsuit against the UC Board of Regents. Head, 51, alleged that he was denied teaching opportunities, promotions, and pay raises because of race. The final straw, he said, was a 2006 graduation event in which he was depicted as “a gorilla on all fours, with my head Photoshopped onto the gorilla, with a smile on my face, and a Caucasian man — completely naked — sodomizing me from behind, and my boss’s head Photoshopped on the person, smiling.”[21] Head confronted his boss, Dr. Gerald Berke, chief of the division of head and neck surgery at the David Geffen School of Medicine, asking him how he could have let this incident happen. Head said Berke just smiled, as if the incident were minor, and he received no apology. About a month after the lawsuit was filed, the university chancellor issued a statement saying that UCLA could not substantiate Head’s claims. When news of the lawsuit spread, students and other members of the UCLA community began to support Head publicly. The lawsuit never went to trial. In 2013, without admitting fault or liability, the UC Board of Regents said it regretted the incident and awarded Head $4.5 million.[22], [23], [24]
THE TUSKEGEE TRAGEDY
It is the most fundamental tenet of medical ethics and human decency that the subjects volunteer for the experiment after being informed of its nature and hazards. This is the clear dividing line between the criminal and what may be noncriminal.[25]
— James McHaney, prosecutor at the Nuremberg trials of Nazi doctors, 1947
Sordid examples of institutional racism are embedded in the racial memory of African Americans, where they continue to make blacks wary of American medicine. The most infamous is the “Tuskegee Study of Untreated Syphilis in the Negro Male,” in which the United States Public Health Service in 1932 partnered with the Tuskegee Institute, an educational establishment in Macon County, Georgia. The study involved mostly poor black sharecroppers who tested positive for syphilis. Over the 40-year course of the study, 600 black men were enrolled. The men were enticed to participate in the experiment by offering them medical exams, rides to and from the clinics, meals on examination days, free treatment for minor ailments and guarantees that burial stipends would be paid to their survivors following their demise. However, even when penicillin became the standard treatment for syphilis in 1947, researchers withheld the use of the antibiotic on these men in order to track the course of the untreated disease. By the end of the study in the early 1970s, not only had dozens of them died, but they had infected their spouses, sexual partners and children with syphilis as well.[26]
The study was eventually recognized as an enormous injustice. As race-relations journalist Nadra Kareem Nittle reports,
The Assistant Secretary for Health and Scientific Affairs created a panel to review the study and in 1972 determined that it was “ethically unjustified” and that researchers failed to provide participants with “informed consent,” namely that test subjects were to remain untreated for syphilis. In 1973, a class action suit was filed on behalf of the enrollees in the study that resulted in them winning a $9 million settlement. Moreover, the U.S. government agreed to give free medical services to the survivors of the study and their families.[27]
Efforts to repair the damage from the study continued. A symposium was held in February 1994 at the University of Virginia entitled “Doing Bad in the Name of Good?: The Tuskegee Syphilis Study and Its Legacy.” This gathering resulted in the creation of the Tuskegee Syphilis Study Legacy Committee, which met for the first time in January 1996. The committee had several goals: to persuade President Clinton to apologize on behalf of the government for the atrocities of the Tuskegee syphilis study; to develop a strategy to address the damages of the study to the psyche of African Americans and others about the ethical behavior of government-led research; to rebuild the reputation of Tuskegee University through public education about the study; and to develop a clearinghouse on the ethics of scientific research and scholarship. On 16 May 1996, President Clinton’s apology was delivered at a White House ceremony to the surviving participants of the study and families of the deceased.[28]
THE GUATEMALA EXPERIMENT
Medical racism is an equal-opportunity offense that extends beyond blacks.
Until the 21st century it remained generally unknown that the US Public Health Service and the Pan American Sanitary Bureau partnered with the government of Guatemala between 1946 and 1948 to enroll 1,300 Guatemalan prisoners, sex workers, soldiers and mental health patients in a study in which they were intentionally infected with sexually transmitted diseases (STDs) such as syphilis, gonorrhea and chancroid. The goal of the experiment, called the “U.S. Public Health Service Sexually Transmitted Disease Inoculation Study of 1946-1948,” was to test the effectiveness of penicillin as a treatment for STDs. Echoing Tuskegee, only 700 of the 1,300 Guatemalans exposed to STDs received treatment. Eighty-three individuals eventually died from complications that may have been a direct result of this research.
Susan M. Reverby, professor of women’s and gender studies at Wellesley College, uncovered the archived but unpublished notes from the Guatemala project around 2005 while researching the Tuskegee syphilis experiment. “I was just completely blown away. I was floored,” Reverby said .[29]
Why Guatemala? In a move that prefigured the decision of a later administration to outsource torture during the Iraq War,[30] the US surgeon general at the time acknowledged that the experiment had to be conducted in a foreign land because it could not have been done in the United States.
Some of the directors of the Tuskegee study brought their expertise to Guatemala. Journalist Nittle elaborates:
It turns out that Dr. John Cutler played a key role in both the Guatemalan experiment and the Tuskegee experiment. The medical research conducted on members of the Guatemalan population stands out as especially egregious given that the year before experiments there began, Cutler and other officials also conducted STD research on prisoners in Indiana. In that case, however, researchers informed the inmates what the study entailed. In the Guatemalan experiment, none of the “test subjects” gave their consent, a violation of their rights likely fueled by the failure of researchers to view them as equally…human as the American test subjects.27
Decades later, Guatemalan citizens filed a class-action lawsuit against eight US federal officials, contending they (or their legal heirs) were victims of the unethical medical experiments. In 2012, in a decision that puzzled many, the judge said, “This court is powerless to provide any redress to the plaintiffs. Their pleas are more appropriately directed to the political branches of our government, who, if they choose, have the ability to grant some modicum of relief to those affected by the Guatemalan study.” [31], [32]
After details of the experiments emerged in 2010, President Barack Obama “offered profound apologies and asking pardon for the deeds of the 1940s” to Guatemalan President Álvaro Colom, launched an investigation by the presidential bioethics commission, which issued a series of reports condemning the experiments.[33]
Dr. Francis Collins, director of the US National Institutes of Health, told reporters that the Guatemala study represented “a dark chapter in the history of medicine.” Collins cited several primary ethical violations: subjects who were members of vulnerable populations were exploited and deceived; there is no evidence they gave informed consent; they were fooled about what was being done to them; and they were intentionally infected with pathogens that could cause serious illness without their understanding or consent.
MASS INTENTIONAL INFECTIONS
Director Collins pulled back the curtain on these practices. He revealed that the published literature contains more than 40 other US-based studies “where intentional infection was carried out with what we could now consider to be completely inadequate consent in the United States.” The US Public Health Service funded many of these, he said.33
Blacks continued to be the target of involuntary medical experimentation through the 1950s. David R. Franz, DVM, PhD, Cheryl D. Parrott, and Ernest T. Takafuji, MD, MPH, in their report “The U.S. Biological Warfare and Biological Defense Programs,” describe how in 1951 Army researchers deliberately exposed “a disproportionate number of black citizens” to Aspergillus fumigatus in order to determine if they were more susceptible to this particular fungus, like they were already known to be more susceptible to coccidioidomycosis, the infection caused by Coccidioides immitis. Likewise, in 1951 unsuspecting black workers at the Norfolk Supply Center in Virginia were exposed to crates contaminated with spores of Aspergillus fumigatus.[34]
Journalist Richard Sanders reports that from 1956 through 1958 the US Army also did field tests in the poor black communities of Savannah, Georgia, and Avon Park, Florida. In these studies, mosquitoes were released at ground level into residential neighborhoods and from planes and helicopters. As swarms of mosquitoes infested many areas, many citizens developed unknown fevers and some died. Following each test, Army personnel posing as public health officials photographed and tested the victims and then disappeared from town. “It is theorized,” says Sanders, “that the mosquitoes were infected with a strain of Yellow Fever. Details of the tests remain classified.”[35]
THE PLUTONIUM EXPERIMENTS
During the development of the atomic bomb during WW II, the biological effects of radioactive plutonium on humans were largely unknown. Since it was felt unlikely that anyone would volunteer as a guinea pig in a possibly lethal experiment to clarify matters, in the late 1940s US citizens were injected with plutonium without their knowledge.
The first unwitting subject was black. In early 1945, Ebb Cade, 53, a worker at the Oak Ridge Nuclear Facility, was involved in a car wreck. He survived, but was bed-bound with a fractured arm and leg. Doctors concluded that he was otherwise perfectly healthy, had no history of serious illness, and was expected to make an uneventful recovery from his two broken bones. “And so,” writes journalist Esther Inglis-Arkell, “having obtained a healthy subject, on April 10 his doctors secretly injected him with 4.7 micrograms of plutonium. Who exactly ordered the injection, and who exactly administered it, has never been determined, with the most likely candidates all contradicting each other. What is certain is that no one administered the dose for the man’s health.”[36]
Physicians collected his bodily waste over the next five days to see how much plutonium he retained in his body. His bones weren’t set until April 15th, at which time bone biopsies were obtained to see how much plutonium had migrated into the bone tissue. Dentists also pulled 15 of his teeth for plutonium sampling. “Ebb Cade was never informed about the reasons for any of this,” writes Inglis-Arkell, “but he might have had an idea of what was happening to him. According to one account, one morning a nurse opened his door to find he’d fled during the night. He died in 1953, of heart failure. He was the first person to be injected with plutonium in the United States, but not the last.”
Elmer Allen was another African American who was caught up in the involuntary plutonium project. He was a Pullman porter who fractured a leg on a freak accident on a train. On July 18, 1947, doctors at the University of California at San Francisco drew a bull’s-eye on Allen’s left calf and injected radioactive plutonium into the center of the circle. Three days later, Allen’s leg was amputated and sent for “radiological” study. Allen, along with Cade, was one of 18 people injected with plutonium in the government-financed experiments during the 1940s that were authorized by Manhattan Project doctors who needed to know how exposure to plutonium might affect lab workers.[37], [38]
“The sad part about Elmer’s story is that nobody believed him,” writes Eileen Welsome, the Pulitzer Prize-winning reporter who broke the story of the plutonium experiments and author of The Plutonium Files: How the U.S. Secretly Fed Radioactivity to Thousands of Americans.[39] “He went to his doctor and told him, ‘I think I’ve been injected with something.’ His doctor diagnosed him as a paranoid schizophrenic at the same time that he was conversing with the atomic energy scientists in Argon National Lab to provide them with tissue samples.”[40]
Officials who designed the study say that Allen was informed about the experiment and signed a consent form allowing them to make the plutonium injection, but a 1974 follow-up investigative study by the Atomic Energy Commission found that patients were not told plutonium was being injected into their bodies, although Allen was apparently told only that he was receiving a radioactive substance of some sort.
One of the justifications physician-researchers used in selecting human subjects was that the subjects had serious diagnoses that made it unlikely they would live more than five years. But three of the injected subjects were still alive when investigations into the program began in 1974. Allen, whose leg was amputated, lived for decades. Misdiagnoses were made. One patient believed to have stomach cancer actually had a peptic ulcer. The parents of a four-year-old boy with bone cancer were lied to; before their son died, they were told that the injected plutonium and a subsequent bone biopsy were part of his cancer treatment. The parents did not find out the nature of the injection until thirty years later.
In late 1946, the Manhattan Project ordered a halt to the injection of humans with radioactive substances, and the Atomic Energy Commission took over. “In April of 1947,” says journalist Inglis-Arkell, “possibly in response to the Nuremburg trials concerning human experimentation, it was recommended that patients be told that they would be injected with a ‘new substance’ and that ‘no one knew what it did,’ but that it could inhibit cancer growth. The trials continued.”36
When the surreptitious program was finally brought to light and was fully investigated in the 1970s, the surviving patients were informed, along with the families of the deceased. One surviving patient never knew what happened to her. Her current doctors judged she was emotionally too fragile to be told about the injections.
Interestingly, the last survivor of the plutonium experiments was Elmer Allen, the African-American man whose leg was amputated after his plutonium injection at age 36. In retrospect, when doctors looked back at the original records, it was clear that his prognosis was good and that he would almost certainly live longer than the short span predicted for all the subjects. Minus one leg, Allen lived until 1991 — a kind of revenge on behalf of all the unwitting subjects in one of the darkest moments in American medical research.
EUGENICS AND BUCK VS. BELL
“Three generations of imbeciles are enough.” With this infamous phrase, Justice Oliver Wendell Holmes, Jr., delivered the decision of the Supreme Court of the United States in 1927 upholding a Virginia statute providing for the eugenic sterilization of people considered genetically unfit. The Court’s decision green-lighted similar laws in over 30 states. Before the eugenics frenzy ended in the 1970s, around 65,000 Americans — mostly women and disproportionately black — were sterilized without their consent or that of a family member. [41]
The plaintiffs challenging the 1924 Virginia statute were Carrie Buck and her mother, Emma. Both of these white women had been committed to the Virginia Colony for Epileptics and Feeble Minded in Lynchburg. Carrie and Emma were both judged to be feebleminded and promiscuous, primarily because they both had borne children out of wedlock. Carrie’s child, Vivian, was also judged to be feebleminded at seven months of age. Hence, three generations of “imbeciles” became the perfect family for Virginia officials to use as a test case in favor of the 1924 eugenic sterilization law.
Dr. Arthur Estabrook, a field worker, provided expert testimony. After a cursory examination of Vivian, then seven months old, he concluded that she “showed backwardness.” Dr. Albert Priddy, the superintendent of the Virginia Colony, testified further that members of the Buck family “belong to the shiftless, ignorant, and worthless class of anti-social whites of the South.” Upon reviewing the case, the Supreme Court concurred “that Carrie Buck is the probable potential parent of socially inadequate offspring, likewise afflicted, that she may be sexually sterilized without detriment to her general health and that her welfare and that of society will be promoted by her sterilization.”
Buck vs. Bell was outrageously flawed. “Feeblemindeness” was a catchall term with virtually no clinical meaning, and has been discarded from the lexicon of psychiatry. Moreover, Carrie was not patently promiscuous. According to her testimony, her pregnancy with Vivian was the result of rape by the nephew of her foster parents. Like many unwed mothers of that time, Carrie may have been institutionalized to prevent further shame to the family. In any case, Vivian, her child, clearly was no imbecile. According to one observer, “Her first-grade report card from the Venable School in Charlottesville showed that this daughter of a supposed social degenerate got straight A’s in deportment (conduct) and even made the honor role in April 1931.” A year later she died from complications of measles.
In 2002 a marker was erected to honor Carrie Buck in her hometown of Charlottesville.
The Virginia General Assembly in 2001 acknowledged that the state’s sterilization law was based on faulty science and expressed its “profound regret over the Commonwealth’s role in the eugenics movement in this country and over the damage done in the name of eugenics.”
The Supreme Court never reversed the general concept of eugenic sterilization.41
How did this movement happen in America? And how did it persist even after World War II, when Nazi eugenics policies had been exposed and condemned around the world? The eugenics movement in the US had the stamp of approval from many influential and powerful individuals. As journalist Kim Severson reported in the New York Times:
Wealthy businessmen, among them James Hanes, the hosiery magnate, and Dr. Clarence Gamble, heir to the Procter & Gamble fortune, drove the eugenics movement. They helped form the Human Betterment League of North Carolina in 1947, and found a sympathetic bureaucrat in Wallace Kuralt, the father of the television journalist Charles Kuralt.[42]
A PIECE OF PAPER
Mississippi appendectomy: a term for an unwanted, unrequested and unwarranted hysterectomy given to poor and unsuspecting black women, often through trickery or deceit; popularized by civil rights leader Fannie Lou Hamer (1917-1977), who experienced such a procedure.[43]
In 1968 Elaine Riddick, a 14-year-old black teenager, was raped and impregnated by an older neighbor. The Eugenics Board of North Carolina declared her “feebleminded” and “promiscuous.” After she gave birth to her son by cesarean section, she was immediately sterilized. Her illiterate grandmother signed the consent form with an X. In a hearing in 2011, Riddick said, “I’ve never been feebleminded. They slandered me. They ridiculed and harassed me. They cut me open like I was a hog.”[44]
Today Riddick is one of the most outspoken advocates for the victims of North Carolina’s eugenics project. One of the most aggressive such programs in the nation, it operated between 1929 and 1974. During this period the state sterilized more than 7,500 of its residents. Most were operated on without their consent, having been judged, like Riddick, to be feebleminded and unfit to reproduce by the state Eugenics Board. Eighty-five percent were women; about 40 percent were black or Native American. Around 2,000 victims are thought to still be alive.
While several other states with similar programs have formally apologized for this ugly chapter in their histories, North Carolina is the only one that has attempted to compensate its victims. In January 2012, a state task force recommended that each living, verified victim be compensated. In October 2014 checks for $20,000 each were mailed to 220 victims.[45]
Injustice, however, so casually inflicted, is still not being remedied. In order to qualify for compensation, a victim must have been sterilized on the order of the state Eugenics Board. Many procedures, however, were carried out at the local level based on the decision of a judge, a physician, or a social worker.
This was the case with Debra Blackmon, a black teen who was about to turn 14 in January 1972, when two social workers came to her home. Court and medical documents offer some details about what happened that day. Blackmon was “severely retarded,” they noted, and had “psychic problems” that made her difficult to manage during menstruation. Her parents were counseled during the visit, and it was deemed in Blackmon’s best interest that she be sterilized. Blackmon, now 56, doesn’t recall all the details of that day, but she does remember a few things from her trip to Charlotte Memorial Hospital. “My daddy said, ‘Don’t hurt this baby.’ And he was crying,” she recalls.
When North Carolina mailed the first compensation checks to qualified applicants in 2014, Blackmon, like many others who are fighting for restitution, was not among them. The reason: her sterilization procedure was not officially ordered by the state’s Eugenics Board.
Blackmon’s family is fighting back. Latoya Adams, Blackmon’s niece, grew up knowing her aunt had been sterilized. But, she says, “we didn’t find out until recently the extent — exactly what all they did to her.” After the compensation law passed, Adams uncovered a wealth of documentation: a court order, names of social workers, all the hospital records from pre-op to discharge, including a description of the entire procedure. “They were telling my grandparents that the surgery was going to be minimally invasive,” says Adams. “They told them it would be a tubal ligation. And they [wound] up doing a full abdominal hysterectomy — on a 14-year-old.”
Armed with this evidence, Adams and her family thought they had a case. They filed the paperwork and waited to hear back. Blackmon’s case was denied because of a technicality: it was not approved by the North Carolina Eugenics Board. Graham Wilson, one of the individuals who decides who qualifies for compensation, says, “A lot of people may have had this done under the auspices of local county groups. They may think they’re qualified, and obviously they had this procedure done to them. But if it was not done under the Eugenics Board of North Carolina, then they’re not qualified.”
Blackmon, now 56, says, “It’s frustrating sometimes. It really is.” Adams, her niece, says the denial feels like a double blow. “Everything is there, but because you can’t find a piece of paper saying it got approved by the North Carolina board, you’re not gonna be compensated. I think it’s sad.… It’s like, you’ve hurt her once before, but then now I feel like you’re turning around and hurting her once again.” Adams and Blackmon are currently working through an appeals process with the help of attorney Bob Bollinger, who represents several uncompensated individuals who say they are victims.44
NATIVE AMERICANS
Medical racism in America’s history has not been limited to African Americans.
On the frontier of colonial America during the 18th century, smallpox was deliberately used as a biological weapon against Native Americans. Sir Jeffery Amherst, the celebrated general who commanded British forces in North America, wrote on 7 July 1763, “Could it not be contrived to Send the Small Pox among those Disaffected Tribes of Indians? We must, on this occasion, Use Every Stratagem in our power to Reduce them.” About a week later he added, “You will Do well to try to Innoculate the Indians by means of Blanketts as well as to try Every other method that can serve to Extirpate this Execrable Race.”
One infamous, well-documented example occurred in 1763 at Fort Pitt on the Pennsylvania frontier, when Amherst ordered soldiers to take blankets and handkerchiefs from smallpox patients in the fort’s infirmary and give them to Delaware Indians at a peace-making parley.[46], [47] Historians describe how, even before Amherst’s urging, a gift of “two blankets and an Handkerchief out of the Small Pox Hospital” was followed by the “raging” of the disease among the Indians.[48], [49]
The enthusiasm for eugenics exploded in America’s Indian Health Service (IHS) in the 1970s. As researcher Jane Lawrence describes in her 2000 paper, “The Indian Health Service and the Sterilization of Native American Women,” various studies suggest that the Indian Health Service sterilized between 25 and 50 percent of Native American women between 1970 and 1976.[50]
Many Native American women agreed to sterilization when they were threatened with the loss of their children, the withdrawal of any future welfare benefits or healthcare provisions, or while they were heavily sedated during Caesarean section or under a great deal of pain during labor. These woman often could not understand consent forms because they were written in English at the twelfth-grade level. Dr. Connie Pinkerton-Uri, a Choctaw-Cherokee physician who reported many of these findings, stated that she did not believe the sterilizations occurred from “any plan to exterminate American Indians,” but rather from “the warped thinking of doctors that the solution to poverty is not to allow people to be born.”[51]
An illustrative case is “Debra” (a pseudonym), 26, a Native American woman from Montana. In 1975, immediately following a Caesarean section, an IHS surgeon performed a hysterectomy without her knowledge or consent. Debra said, “[T]hey came in the next day and said they needed me to sign some forms that hadn’t been signed before the C-section. And they wanted me to date it the day before, but I put the right date on it.” She stated that the hospital personnel did not inform her about the sterilization, nor did they explain alternative methods of birth control, because they felt she was better informed than the majority of Indian women, having completed several years of college, and would probably not have consented even if asked. The unfortunate experience changed Debra’s trajectory in life. She changed her major in college and became a lawyer. She specializes in medical cases and family law. She tries to keep families together, especially when social services strive to separate children from their parents.[52]
Lawrence also reported the experience of two young Native American women, who entered an IHS hospital in Montana for an appendectomy. In addition to the appendectomy, both received “incidental” tubal ligations. They were only 15 and had never had children. Neither girl was informed about the procedure beforehand, nor were their parents.
These events were a common happening during the 1960s and 1970s. But in 1976 Congress passed the Indian Health Care Improvement Act, which gave tribes the right to manage or control IHS programs. Although this development largely eliminated the scourge of forced sterilizations of Native American women, the scandal was a bitter reminder to many Native Americans of the genocidal wars of the nineteenth century, but this time with a difference: physicians had now been added to the armamentarium of genocide.
In 1976,the Government Accounting Office (GAO) released the results of its investigation of eugenics policies among Native Americans. Although the GAO did not interview a single Native American woman subjected to sterilization, it found that the IHS performed 3,406 sterilizations in the period between 1973 and 1976. Per capita, this is the equivalent of sterilizing 452,000 non-Native American women.
In his review of these findings, physician Gregory W. Rutecki observes, “What may be the most disturbing aspect of the [GAO] investigations followed: it was physicians and healthcare professionals in the IHS who coerced these women. It was they who abandoned their professional responsibility to protect the vulnerable through appropriate, non-eugenic indications for surgery and informed consent prior to the procedures.”[53]
In some areas such as Albuquerque, NM, sterilization procedures were often not done by IHS personnel but were contracted out to local, non-IHS physicians, who were reimbursed in full for their work. Although these events happened four decades ago, they have important implications for contemporary physicians. Rutecki:
Similar models for specialty care which is contracted and reimbursed in full exist today under the umbrella of managed care. Payment for medical technique removed from context of ethical considerations may tempt many physicians in an era of decreasing reimbursement rates. Erosion of Hippocratism inhabits every aspect of the tragedies of care for these Native American women, and serves as more than a warning to us of the danger of divorcing ethical conviction from medical care.
THE ETERNAL TEMPTATION
Lest we think the cloud of eugenics has completely given way to more enlightened times, we should remain vigilant, because the temptation of men to interfere with the biological and reproductive functions of women appears to be an unquenchable desire. The eugenicists — yes, they are overwhelmingly male — are still at work.
California’s Center for Investigative Reporting revealed in 2013 that doctors under contract with the California Department of Corrections and Rehabilitation sterilized nearly 150 female inmates from 2006 to 2010 without required state approvals. “At least 148 women received tubal ligations in violation of prison rules during those five years — and there are perhaps 100 more dating back to the late 1990s, according to state documents and interviews,” wrote journalist Corey G. Johnson for the Center in 2013. This sounds like the IHS scandal all over again, on a smaller scale. Johnson:
From 1997 to 2010, the state paid doctors $147,460 to perform the procedure, according to a database of contracted medical services for state prisoners. The women were signed up for the surgery while they were pregnant and housed at either the California Institution for Women in Corona or Valley State Prison for Women in Chowchilla, which is now a men’s prison. Former inmates and prisoner advocates maintain that prison medical staff coerced the women, targeting those deemed likely to return to prison in the future.[54]
One is reminded of Santayana’s warning: “Those who cannot remember the past are condemned to repeat it.”[55]
A CALLING OF THE HEART
Our true nationality is mankind.[56]
— H. G. Wells
In the long arc of black history, abuses such as those we’ve examined constitute dragon’s teeth sown in the soil of America, erupting eventually in estrangement of African Americans from modern medical care, as when my black patient decided to escape the hospital and risk a dire outcome rather than submit to treatment in a white-dominated medical milieu. It is not that African Americans recall all the barbs on the razor wire of history that prevent their full integration into American medicine. For most blacks, the experiences of the Ebb Cades, the Elmer Allens, and the Elaine Riddicks are emulsified in a complex heritage that is more often felt than specifically remembered. Historical events run together. As historian Arnold Toynbee said, history is just “one damned thing after another.”[57] Details get lost; it is the overall pattern and direction that are retained.
A backward look confirms that racism has been an ever-present dagger in the heart of medical ethics. And of all the professions, it is medicine that can least afford racial bias, because even a whiff of prejudice violates the compassion and integrity to which we have solemnly sworn. Yet we have violated these standards repeatedly, and the stain of our transgressions remains. For as we’ve seen, when we go looking for racial bias through careful studies, we find that prejudice is still there, clinging like barnacles.
The old eugenics arguments are long gone, but residual attempts to justify racial prejudice still poison our society. One such ploy, already mentioned, is the projection onto minorities of a fantasized characterological defect or moral failing, which causes them to voluntarily choose low achievement rather than pull themselves up by their bootstraps — a blame-the-victim argument. Another competitor in justifying racism is the antipathy in humans toward “the other,” who may be a member of another tribe, race, nationality, class, or religion. This innate wariness is considered a holdover from our long evolutionary journey, a brute fact of human nature. This variety of prejudice toward anyone unlike ourselves is regarded by many as a heritable instinct that favors biological survival. As such, it may be ineradicable, some say, and should be socially tolerated, at least to some degree. But as far as the healing professions are concerned, there simply are no justifications for racism. These defenses are no more legitimate than the “feeblemindedness” of America’s eugenics era.
Charles M. Blow, the African-American columnist at the New York Times, grew up in extreme poverty in the segregated Deep South. He observes,
But we can talk about data on white-black bias until we are blue in the face. At some point, it simply comes down to what people believe, and yes, how they feel. It is into this morass of feeling that we must step when discussing race. That is why interpersonal race discussions can feel so strange, messy and uncomfortable — we must confront the amorphousness and the mythologies. We must value the questions even when we cannot answer them. We must allow ourselves to empathize with other people’s feelings…. How does all this make you feel? A little uncomfortable? Good![58]
Sir William Osler (1849-1919), widely regarded as the father of Western modern medicine, said as much a century ago. He maintained, “The practice of medicine is an art, not a trade, a calling, not a business; a calling in which your heart will be exercised equally with your head.”[59]
The increasing depersonalization and commodification of medicine do not make it easy to expel the ghosts of racism from our profession, because these forces work against the calling of the heart that Osler, correctly, prized so highly. But that is no excuse. In the end, those of us who have chosen this honorable profession must commit unhesitatingly to serial autopsies of our emotions, always probing for bias and prejudice, and we must summon the courage to face what we find.
POSTSCRIPT
And so I wonder. If I had managed to get to the frightened young black woman while she was still in the ER, or if I had reached her bedside more quickly following her admission, would things have turned out differently? I am left with the troubling thought that as a representative of modern medicine I failed her, and that the institution I represented failed her as well. True, this situation was not an emergency and there was no obvious reason to rush — but if this young black woman had been white, would I have responded more promptly? Was my delay a reflection of unconscious bias? Of medical racism?
Why didn’t you seek help sooner? What were you thinking and feeling? Why did you escape the hospital? What happened to you when you left? Are you still alive?
I remain haunted by this event.
Original Publication: Larry Dossey. Medical Racism. Explore. 2015; 11(3): 165-174.
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Learn More About the Author
Larry Dossey, MD
Executive Editor, EXPLORE: The Journal of Science & Healing
This distinguished Texas physician, deeply rooted in the scientific world, has become an internationally influential advocate of the role of the mind in health and the role of spirituality in healthcare. Bringing the experience of a practicing internist and the soul of a poet to the discourse, Dr. Larry Dossey offers panoramic insight into the nature and the future of medicine.