observations and questions

I am a reflection of my mother’s secret poetry as well as of her hidden angers.

• Audre Lorde,  Zami 

My grandmother has breast cancer, and she hurts. But her pain is many places. Several times a day she complains of ringing in her ears, headaches, body aches. She rarely sleeps more than four hours a night and is too old and weak to work, but she always goes to church on Sunday mornings. With the conviction of a preacher, she tells me about how her children are surely trying to kill her. Although she frequently forgets my name, she remembers everything about her childhood and a husband she would rather forget. She is not too different from the women who precede her. My mother has breast cancer too. We contemplate if it is hereditary. She suffers from chronic migraines. She uses aspirin each time, but on some days, she comes home from work. I can tell she is sick when she falls asleep on the couch downstairs. My mother does not believe in rest and wakes up in the morning while the stars are still in the sky to prove so. My mother does not want to test for the BRCA gene. We want my inheritance to be a surprise, but my head already hurts. I wake up with the sunrise not out of pleasure but because exhaustion is better than nightmares. I was eight when I began to believe my mother tried to poison my food at dinner. What else will I inherit from the generations of pained women before me?

Responses to trauma can include persistent fatigue, sleep disorders, nightmares, fear of recurrence, anxiety focused on flashbacks, depression, and avoidance of emotions, sensations, or activities that are associated with the trauma, even remotely. (https://www.ncbi.nlm.nih.gov/books/NBK207191/) 

When the doctors and mothers who were meant to heal our trauma could not, we had nowhere left to place our suffering.  

research

In 32 states primarily between 1950 and mid 1970s, sixty thousand (60,000) women were forcibly sterilized in the United States. From California to North Carolina, state funded eugenics programs were commanding control over women’s bodies. The hope was a racial cleansing, a genocide by means of kill before there is someone to kill. Cutting umbilical cord, tying tubes, disrupting the biological matrilineal order. Severing mother from future child but not from the generational and communal harm that accompanies being born Black. Historical trauma is an event, or a set of events, that happen to a group of people who share a specific identity (https://www.hvtn.org/en/community/community-compass/vol18-issue1/historical-trauma.html). These doctors’ concerns were not about babies inheriting the BRCA gene or trauma, rather “promiscuity” and “feeble-mindedness,” and other “undesirable” qualities for a child in white America to possess. Having been raped became a fatal diagnosis and sign of being an unfit mother. Hamer, Quinlan, and Grano of University of North Carolina remind us that for “eugenic rhetoric the concept of feeblemindedness came to operate as an umbrella concept that linked off-white ethnicity, poverty, and gendered conceptions of lack of moral character together.’” Eugenics was a pseudoscience which abused true genetic research and grew like wildfire. Unfettered by the ubiquitous anti-Black rhetoric of the period, eugenics took the lives and humanity and turned from a Black person to a body. 

There are many ways to cure a body. When the body is sick, white blood cells fight the impurity until the invasive substance is eradicated. Then the body develops an immunity, and the sickness cannot return. The disease of Blackness has many common cures in the United States. Some practices are new, some are old. Options for treatment include: slavery, genocide, racial purification, gentrification. But the prettier names are usually:

“let’s add a Whole Foods,” 

and police brutality, 

now-outlawed eugenics programs,

or “this neighborhood, this school, this job just doesn’t seem like a good fit for you.”

White harm towards the Black community is so embedded in the culture of the United States, and further entrenched in Black spaces, that white people have convinced Black people and the world that pain is an inherent part of being Black. 

The laws of nature require the obliteration of the unfit, and human life is valuable only when it is of use to the community or race. (Paul, Diane B. Controlling Human Hereditary 1865 to the Present)

Elaine Riddick Jessie knows this to be true.  

In 1968 when Jessie was fourteen, her story would not be considered extraordinary. In fact, she was one of 7,600 poor and Black to be sterilized. Jessie had been raped, impregnated, and without her knowledge, tubes tied. Only when she desired to have children years later did she learn of the tubal ligation. Jessie describes herself as “barren and fruitless” having been denied an inalienable right from God (Begos, Kevin, and John Railey. “Still Hiding.” Winston-Salem Journal ). We know this to be true. At age fourteen, Jessie could not have consented to the procedure. Social workers went to her house seeking a signature to move forward with the procedure. Jessie’s grandmother who could not read or write was told to sign an “x” on a dotted line or have Jessie put up for adoption. Then Jessie was having her baby, not knowing that only a few hours after giving birth that her first baby would be her last. Much of the Eugenics practices in the 1950s and 60s go this way, sixty four percent of all procedures having been on Black women. Two thousand of whom were under the age of eighteen. Decisions made based on the belief that by mitigating Black births meant improving white livelihood. In many ways we know this to be true. The unrelenting oppression of Black people ensures the impossibility of Black people flipping the script and committing the same harm against the white body – the great white fear of vengeance.   

And in 1968 all reproductive decisions made for Jessie and the poor Black girls who looked like her were reached by five members of the North Carolina Eugenics Board. They concluded that, Jessie, having been raped, was one used to “‘running around . . . out late at night’ (ibid., 4). This was presumed to be sufficient proof of an innate disability that threatened to denigrate the purity of the white race (Stubblefield 2007).” (Tired and Hungry). Being unfit, she was deemed useless, and therefore her offspring would be as well. Her case presented to the Eugenics board is brief and considered to contain all essential information. 

8. Delores Elaine Riddick – (N) – Perquimans County

Social information: Age 13. Single. Pregnant. Psychological

April 5, 1967. MA 9-6: IQ 75

This thirteen year old girl expects her first child in March 1968….She has never done any work and gets along so poorly with others that her school experience was poor. Because of Elaine’s inability to control herself, and her promiscuity – there are community reports of her “running around” and out late at night unchaperoned, the physician has advised sterilization….This will at least prevent additional children from being born to this child who cannot care for herself, and can never function in any way as a parent.

Diagnosis: Feebleminded. (Begos, Kevin, and John Railey. “Still Hiding.”  Winston-Salem Journal )

The five members of the board and the doctor who conducted the procedure on Jessie represent only a small fraction of U.S. medical interference on Black people’s bodies in the mid 1900s. 

The descendants of Henrietta Lacks know this to be true. Eighteen years before doctors cut open Jessie, Henrietta, who is often unnamed and whose existence is condensed to four letters, visits John Hopkins complaining of vaginal bleeding. At this point, Johns Hopkins was one of the very few hospitals willing to treat African Americans (read: examine and experiment). Henrietta, with a knot in her stomach, begrudgingly goes to the doctor’s office, having shared very little of her pain with family members. Her cousin Sadie knows this to be true. But Sadie assumed Henrietta’s distaste for doctors came from a fear of living a life like Jessie’s, being forcibly prevented from having more children. Upon arrival at the hospital, she, too, has a medical chart ready for review.

Sixth or seventh grade education; housewife and mother of five. Breathing difficult since childhood due to recurrent throat infections and deviated septum in patient’s nose. Physician recommended surgical repair. Patient declined. Happy household. Well nourished, cooperative. Unexplained vaginal bleeding and blood in urine during last two pregnancies. Doctor recommended sickle cell test. Patient declined. Tests showed areas of increased cellular activity in the cervix. Physician recommended diagnostics and referred to specialist for ruling out cancer. Patient cancelled appointment. Tested positive for gonorrhea. Patient recalled to clinic for treatment. No response. 

In the exam room, Dr. Howard Jones finds the exact spot of Henrietta’s troubles, a tumor. He conducts the biopsy, and per his practice keeps some of the cells from Henrietta’s sample for his personal use. He does not tell Henrietta or any of her family members of this invasive procedure which encroached upon Henrietta’s body and her rights. He reaches out to Dr. George Gey and Wesley TeLinde who are interested in her cells for their individual desires. Gey wants to make cells live forever, and TeLinde wants to assert the urgency of cervical carcinoma as a disease that needs to be treated aggressively. Gey finds what he is looking for. Not only do Henrietta’s cells live, they multiply. 

Henrietta’s cells are the only parts of Henrietta that exist today. 

Her daughter Deborah tells us what she knows of her mother: “Science calls her HeLa and she’s all over the world in medical facilities, in all the computers and internet everywhere.” Even those who do not know her name are more likely to know her cells: HeLa. But before she is HeLa, and before she is Henrietta, she is Loretta Pleasant of Roanoke, Virginia. Although this early life is not the story of her told, we know that in all her identities, she spent her life within the same fifty-mile radius. In medicine, in research facilities, in the bodies of those who have used vaccinations that contain HeLa, Henrietta has touched more of the world than she did alive, living in Virginia.

Despite HeLa cells being one of the greatest medical advancements in the last century, much of the Lacks family lives in poverty unable to receive access to the advanced healthcare for which their mother, wife, and friend can be accredited. In fact, twenty years after her death must pass, and many experiments must be conducted, reviewed, and revised with her cells before the Lacks family learns that parts of their dear Henrietta still exist. That she in some way is replicating. That this integral part of her body is numerous, she could stretch herself around the globe three times. Deborah has thoughts on this too. “I have always thought it was strange, she says, if our mother’s cells have done so much for medicine how come her family can’t afford to see no doctors? Don’t make no sense…but I don’t got it in me no more to fight. I just want to know who my mother was” (Skloot). 

And who was she? The healing that comes from a mother was not present for the Lacks children. With what is currently known, none of the Lacks children have multiplying cells like she did. But for the few who can afford to visit the doctor’s office, they do have her same fear. After all, doctors took more from Henrietta far more than they ever gave. The Lacks children only live with the pain of knowing that white men who do not care about their livelihood will be closer to their mother than they ever were. Though their words are not listened to, the words of a white woman who decided to write a book about Henrietta are praised. And without a mother and without access to doctors, where and how are the Lacks family members supposed to heal? 

A common symptom that arises from traumatic experiences is hyperarousal (also called hypervigilance). Hyperarousal is the body’s way of remaining prepared. It is characterized by sleep disturbances. Hyperarousal is a consequence of biological changes initiated by trauma.

What lived in Henrietta’s biology that allowed her to multiply? Unable to help her family directly, did she stretch herself thin as many Black women do in hopes of finding healing for future progeny? Or did the inheritance of memory and trauma simply take up too much space to live in a single cell?

“African American cultural expression emerges from “a distinctive mass experience of loss and longing, of marginalization, chronic mourning, and pain. All of this was constitutive of a traumatic field that provided the existential context for the emergence of African American religious experience….the experience of racialized oppression overwhelmed Africans’ psyches (and those of their progeny) and made their ways of making meaning in the world ineffective. In that instance they encountered the abyss in which meaning is not simply destroyed but swallowed up in the void, lost” (Still, Erica. Prophetic Remembrance Black Subjectivity in African American and South African Trauma Narratives).

When the doctors and mothers who were meant to heal our trauma could not, we had nowhere left to place our suffering.

hypothesis

Trauma can be inherited. Much in the same way brown eyes and brown hands can be. Much in the same way promiscuity and “feeble-mindedness” were thought to be. The Black person’s body is frequently subject to trauma, medical and familial. I did not understand my mother’s weariness of the doctor’s office until I was much older. When my mother goes in for surgery to correct her small intestine, the white surgeons made unnecessary corrections on her stomach. She goes back two more times, for two more surgeries. When the doctors tell her follow-up surgery is necessary, what they mean to say is we did not stitch you back properly the first time. We fixed the wrong problem. We tried to fix your Black problem. Sorry we did not listen to your pain. If this one goes wrong too, third time’s a charm. 

Though they do not remove the problem, they do remove her belly button. Cut open, cut away so many times. The connection between my mother and her own is eradicated from skin, from sight and surface. It is the making of the doctor’s desired disruption within the Black family. Cut family member away from generations before. Leave the dissected body pondering its origins. Leave them only the memory of trauma that is passed through the blood. 

“I have a memory that is not my memory. I think I hold onto this memory in part as a way of trying to piece together fragments of a story to which I was exposed in various ways in childhood but that could not be explicitly told precisely because it could not be linked to my current experience.” (Fragments of Trauma and the Social Production of Suffering : Trauma, History, and Memory, Michael O’Loughlin, and Marilyn Charles, Rowman)

When the doctors and mothers who were meant to heal our trauma could not, we had nowhere left to place our suffering.

begin testing

Being equipped, white doctors began their experiment. The Black men of Tuskegee know this suffering to be true.

With second stage syphilis destroying their bodies, they seek out the only doctors who can help them. Though these doctors have the ability to hurt them as well. The simultaneous fear and need for white medical care runs deep in Black blood. (Read: bad blood. Read: bad blood is the Black blood that infiltrated Henrietta’s body as her husband brought other blood home every night after meeting new women in their bed). 

The Tuskegee Syphilis study lasted forty years from 1932 until 1972. The 623 men involved (read: abused) in the study found a similar state to Henrietta, able to speak only through the representation from another body. In fact, their stories are quite similar, ill and seeking guidance, making a decision they believe is the lesser of two evils. In 1932, while Black men are seeking well-being, the medical community is seeking a cure for the awful disease that is syphilis.  The experiment, like the disease, follows three stages. 

1. The disease appears first as pimple, small red, unassuming. Often, the spot appears on the genitals. However, the blemish can also pass orally. It will sound like a whisper: the government doctors who used to provide free exams are in town for a new health study. This phase generally lasts for only a few days, but in some cases can last up to eight months like it did from October 1932 until June 1933. Apart of step one too, is collecting a sample of this blemish. Four hundred men, ages twenty-five or older, already infected are necessary. Do not tell these men, whose blood you have tested and taken that they have syphilis. Instead, call it “bad blood.” Consent is not necessary. The blemish can also appear in churches, schools, community centers, anywhere deemed appropriate for a doctor’s visit. The goal of step one Dr. Clark makes clear: It is my desire to keep the main purpose of the work from the Negroes in the county and continue their interest in treatment. The purpose of the study (read: genocide) was to observe the effects of untreated syphilis. The disease carries many physical forms, affecting cardiovascular and nervous systems. A three-inch needle for a spinal tap is suitable for detecting these conditions. 
2. About a week later, and lasting for several more, comes the second stage. A rash on the hands or feet. Ulcers and headaches. Some of these symptoms are almost negligible, but open ulcers can infect others. At this point, a control group without syphilis is added to the study. Commit to following the participants until death. In 1958, participants receive a letter from the Surgeon General and $25 as a thank you for participating and an incentive to continue. Jim Jones writes in Bad Blood, that the fate of these men had already been determined. Both local doctors and the Public Health Service had agreed not to treat any of the men in Macon County, Alabama. Even when experimental programs, some successful, began to appear, these men were not considered for participation. 
   1. Between the second and third stage, syphilis may seem to go dormant. This period can last for years, leaving the third and final stage to appear at any moment. During this period, penicillin is discovered to be a cure for syphilis. Still, the men are not treated. 

The subject of untreated syphilis is not something new. The study of it was started some twenty years ago and has been plodding quietly along ever since. I won’t bother you with the minor details of the study except to say that all were to have regular blood tests and physical examinations. The Milbank Memorial Fund agreed to contribute money for necropsy. Part of the money goes to the physician doing the work and part of it goes to the family to aid in burial expenses. Now what have these findings been, in terms of generalities? First, that untreated syphilis shortens life expectancy by 20 percent. Second, that there is a greater involvement of the cardiovascular system and third, that syphilitics without treatment appear to be subject to a higher rate of other types of morbidity. Thus they die earlier. This is probably what most people expect from general knowledge, but it is important to have the facts documented.

  – Dr. Oliver Wenger (Gray, Fred D. The Tuskegee Syphilis Study: the Real Story and Beyond)

1.  In the final stage, syphilis attacks the nervous and cardiovascular systems. Some people infected may go blind. Others suffer from paralysis. The heart may fail. Severe damage to the brain, skin, bones, or other organs may occur. Sometimes advanced syphilis will make blood vessels burst, especially near the heart, resulting in immediate death. For a few, some will live without many symptoms. Such is the case for only 7 of the 623 men in the Tuskegee Study. But in the final years of the study between 1965 and 1972, racial relations change throughout the country. Notable events, Rosa Parks refuses to move her seat on the bus and Lee v. Macon County Board of Education is brought to court to end segregation in the school district. In 1972, the study’s final year, participants in the study learn about their involvement in study. The public discovers there was a study at all. Lawyer Fred Gray begins developing a lawsuit at the request and consult of a study survivor, Charlie Pollard. The involved parties try to shift blame. The federal government launches an investigation. By November 6, 1972, the study is over. 

record data 

7,600 Black people in North Carolina forcibly sterilized. 60,000 people, majority Black, across the United States. Society must protect itself; as it claims the right to deprive the murderer of his life so also it may annihilate the hideous serpent of hopelessly vicious protoplasm. 

5 people on State Eugenics board making decisions for strangers’ bodies. Unfit to care for children.

623 men used as guinea pigs long after medical papers revised their errors. Til death do us part.

1 cell that became many. Blackness be spreading all inside. 

The Black person, to medicine, is only a body, designed for experimentation and error. Dr. Michele Andrasik tells us “powerful stressful environmental conditions can leave an imprint or “mark” on the epigenome (cellular material) that can be carried into future generations with devastating consequences. In studies of pregnant women, we see that psychological and nutritional stress in the mother during pregnancy can lead to biological changes that predispose their children to diabetes, heart disease, high blood pressure, and PTSD as adults.” The doctors whose eugenic practices could not kill all Black lineage from the source, found other ways to kill bodies instead. They promised the longevity of suffering, internal and mental ache that no one knew how to heal. And the Black mothers and fathers and caretakers who did survive, who could not hold all the hurt in their bodies asked their children to share it with them. So we did.

next steps/revisions 

Racial medical discourse in the United States has changed, moved. Certain blatant transgressions against the Black community will now face uproar. Note: be intentional and subtle about racism. Instead of a formal study, ask questions about family and medical history on job applications. Say that you’re just double-checking to see if they have insurance coverage, a permanent address, and a reliable mode of transportation to and from work each day. In the doctor’s office, use medical terms that many poor and Black people do not have the access to know. Without explaining further, ask if you may proceed with treatment. This will be considered consent. Hire Black doctors, but make their jobs incredibly difficult and have them complete mundane errands like getting coffee. The University of Virginia study from 2016 says the majority of white medical students believe there are biological differences between Black and white people and believe Black people have less sensitive nerve endings. Don’t vocalize your agreement with the study, or else some people may think you’re biased. Continue the same harmful practices that make the mortality rate for Black women giving birth to be up to six times that of white women. Follow these steps, revised for a false progressivism, and studies of Black people as experiments can continue. 

conclusion

the prophetic element of prophetic remembrance continually puts forward the choice, mandating the continual decision in the present to shape the future. 

My mother often gives me choices that are not really choices, and often I find this amusing. The way she asks if I can clean the table, but “if you want, you can continue watching television.” But when she is sick, she does not have enough breath to offer a choice, only a plea. So when she complains of pain and asks if I can get her medicine, it sounds like she is asking for me to take her pain away. I do not know how to tell her that though she no longer has a belly button, any sign that she was born to a long line of aching women, that she did give birth to me. And when she did, and survived, that she passed down her pain in my bloodstream. I did not have a choice in that matter. 

When the doctors and mothers who were meant to heal our trauma could not, we had nowhere left to place our suffering.  

Testing complete. 

Bibliography:

1. Skloot, Rebecca. The Immortal Life of Henrietta Lacks. Broadway Books, 2010
2. Hamer, Elliot M., et al. “‘Tired and Hungry’ in North Carolina: A Critical Approach to Contesting Eugenic Discourse.” Women, Gender, and Families of Color, vol. 2, no. 2, 2014, pp. 163–184. JSTOR, www.jstor.org/stable/10.5406/womgenfamcol.2.2.0163.
3. Begos, Kevin, and John Railey. “Still Hiding.” Winston-Salem Journal , 9 Dec. 2002, www.journalnow.com/news/local/still-hiding/article_e26e967e-8fe4-11e2-b104-0019bb30f31a.html.
4. Center for Substance Abuse Treatment (US). “Understanding the Impact of Trauma.” Trauma-Informed Care in Behavioral Health Services., U.S. National Library of Medicine, 1 Jan. 1970, www.ncbi.nlm.nih.gov/books/NBK207191/.
5. DenHoed, Andrea, and Andrea DenHoed. “The Forgotten Lessons of the American Eugenics Movement.” The New Yorker, The New Yorker, 27 Apr. 2016, www.newyorker.com/books/page-turner/the-forgotten-lessons-of-the-american-eugenics-movement.
6. Gray, Fred D. The Tuskegee Syphilis Study: the Real Story and Beyond. NewSouth Books, 2002.
7. Paul, Diane B. Controlling Human Hereditary 1865 to the Present. Humanities Press International, Inc., 1995. Including archival primary letters from Madison Grant.
8. Duster, Troy. Backdoor to Eugenics. Routledge, 1990.
9. Still, Erica. Prophetic Remembrance Black Subjectivity in African American and South African Trauma Narratives. University of Virginia Press, 2014.
10. Joyner, Jazmine. “Nobody Believes That Black Women Are in Pain, and It’s Killing Us.” Wear Your Voice, 24 May 2018, wearyourvoicemag.com/race/black-women-are-in-pain.
11. Andrasik, Michele. “Historical Trauma and the Health and Wellbeing of Communities of Color.” HIV Vaccine Trials Network, HTVN Core, www.hvtn.org/en/community/community-compass/vol18-issue1/historical-trauma.html.
12. Volume 18, Issue 1
13. Fragments of Trauma and the Social Production of Suffering : Trauma, History, and Memory, edited by Michael O’Loughlin, and Marilyn Charles, Rowman & Littlefield Publishers, 2014. ProQuest Ebook Central, https://ebookcentral-proquest-com.revproxy.brown.edu/lib/brown/detail.action?docID=1864117.