We must not see any person as an abstraction. Instead, we must see in every person a universe with its own secrets, with its own treasures, with its own sources of anguish, and with some measure of triumph.
–Elie Wiesel, from The Nazi Doctors and the Nuremberg Code
Black women seeking healthcare did so with reservations. Urban legends of doctors as evil scientist circulated in the black community. This fear of medical professionals was rooted in the scientific experimentation of minorities. From Nazi research using Jewish subjects to the story of Henrietta Lacks, minorities have reason to be concerned, but they were often left with little to no choice regarding their health care. The men of the Tuskegee Syphilis Study were coerced into becoming study subjects because medical assistance and small compensations were often provided. Henrietta Lacks sought medical attention from the public ward of Johns Hopkins hospital, leading to the extraction and unauthorized selling of her cells. While race remained an issue, gender and class become more evident through the story of Henrietta Lacks.
The cells of Henrietta Lacks have led to the creation of the polio vaccine, chemotherapy, cloning, gene mapping and in vitro fertilization. Science textbooks and researchers refer to these life-saving cells as HeLa, forgetting to acknowledge the woman who died due to these cancerous cells. Henrietta’s story is complex and fills a 300-page book, but it is a consensus amongst current researchers that her treatment was unethical. Henrietta was treated for cervical cancer using radium that ultimately led to her infertility and the painful charring of her belly. Records show Henrietta was not aware that these treatments would leave her sterile and “’if she had been told so before, she would not have gone through with treatment’” (Skloot 48). Henrietta was not alone in her experiences with the healthcare system and its regard for women.
Too often, women underwent hysterectomies without full knowledge of the implications. Midge Hart writes of her hysterectomy in 1979, at age thirty-two. Her experience parallels that of other women who believed they should, “’leave it all to the experts, the shrinks and the M.D.’s” (Hart). Before the hysterectomy, Hart was taking the birth control pill that only worsened her fibroids. Her doctor was aware of the risk but failed to inform Hart, leading to a hysterectomy that should have been a last resort, not a simple fix. Henrietta and Hart’s lack of awareness regarding the treatment of their ailments points to the disparity between the upper class doctors and the working class, as well as the genders.
The treatment of Henrietta Lacks was not an isolated incident, nor was it a surprise to the black community in Maryland. Feelings of distrust towards Johns Hopkins were strong in the 1950s, but free healthcare in the public ward was often their only option. Dr. Richard Wesley TeLinde, who developed the Pap smear, “believed that since patients were treated for free in the public wards, it was fair to use them as research subjects as a form of payment” (Skloot 30). For Dr. TeLinde, class remains the dividing line between patients and subjects, but Dr. Howard Jones calls out race. He wrote, “’Hopkins, with its large indigent black population, had no dearth of clinical material,’” clearly defining research subjects as working class African Americans. Although it was now the early 2000s, the Lacks family was fearful of Johns Hopkins and many refused to go to the hospital’s public ward.
Henrietta’s husband, Day developed gangrene in his toes, but he still refused medical attention because he “didn’t want doctors cutting on him like they did Henrietta” (Skloot 163). The family describes the urban legends surrounding Johns Hopkins, stories based on legitimate fears of being test subjects. Henrietta’s daughter-in-law, Bobbette, describes the anxiety, “’You’d be surprised how many people disappeared in East Baltimore when I was a girl. I’m telling you, I lived here in the fifties when they got Henrietta, and we weren’t allowed to go anywhere near Hopkins. When it got dark and we were young, we had to be on the steps, or Hopkins might get us’” (Skloot 165). These concerns continued but the poor Lacks family still needed money any way they could manage.
In the 1980s, Henrietta’s youngest son, Zakariyya (born Joe, but converted to Islam while in prison), turned to medical studies as a way to survive. Zakariyya was homeless when he saw an ad for volunteer research subjects that would provide him with money, a warm bed and a few meals. The fears of Johns Hopkins, and anger concerning the treatment of his mother were not enough to keep Zakariyya from the study. The allure of free healthcare and compensation were enough to convince many working class blacks to accept their roles as inferior test subjects.
Impoverished blacks struggled to pay for medical care because welfare programs overlooked them. The Social Security Amendments of 1967 emphasized the male breadwinner model. Speakers point out the black male’s income, “Only two of out of every five Negro males in our ghetto areas make more than $60 a week,” (Senate 789). Speaking on behalf of the National Council of Negro Women, Ruth Atkins says, “The Negro female worker is triply handicapped. Concentrated in non-union employment, he is discriminated against on the basis of both race and sex, and inadequate education and training stand between her and successful competition in the marketplace. As a result, she is paid less, on the average, than Negro and white men and white women” (Senate 774). Atkins calls for changes to Social Security that would include African Americans in the work training that is provided to white men. She also suggests day care facilities to enable black women to leave the home. With the rate of hospital costs increasing at almost double the rate of the average income increase, putting black men and women to work seems like the most sensible change in 1967 (Senate 67).
African Americans were subjected to both social and economic hardships that challenged their access to medical care. The fear of experimentation, as well as the poverty present in America, led to the continued discrepancies between white and minority health care.
Hart, Midge. “Hysterectomy: One Woman’s Story.” WomenWise 4, no. 3 (Sep 30, 1981): 10. http://search.proquest.com/docview/231766346?accountid=14244.
Senate. Committee on Finance. Social Security Amendments 1967, Part 2. (Y4.F49:So1/8/967/pt.2)
Skloot, Rebecca. The Immortal Life of Henrietta Lacks. New York: Crown Publishers,