Personal Experience
I have one ovary. It's not a condition that gives me any shame to say. Actually, I talk about my lack of left ovary often, as a cautionary tale. It is just a fact of my life that I have come to accept along with the scars from multiple surgeries over the years. What I don't accept is how I ended up with one ovary, which is why I often share my story. My story is one that is often played out more times than I would like, its commonality is what is most unnerving because it happens so frequently to other Black women.
I had reached out to a few physicians that were part of the woman's health network covered by my insurance. The issue I was experiencing, which at the time was dismissed more than once, was an abnormally long menstrual cycle and a heavy feeling to one side. I can say that I had seen 5 doctors in the practice with the same results. I was told many variations of "sometimes your body does that". I was still young at the time so I trusted my doctors to have my best interests in mind.
It took me complaining about the pain at a Walgreens clinic during a random visit (for allergies) and a very astute nurse who took the time to hear me out and feel the area. She would at the end of the visit suggest I go to the group she belonged to. She personally called the office on my behalf and insisted they had to take me. It would be that new doctor, outside of my fancy network, who found the mass that I had been describing as "it feels like something is pulling in there”. Eventually, she help to get my stage four endometriosis under control, removed the cyst that devoured my left ovary and put me on a medical treatment plan thus saving my fertility that would allow me to have my daughter a few years later.
Up until that point in my life, I had yet to really navigate what I would eventually learn was the common poor outcomes of the medical system, especially in gynecology, that Black women often face. I had been spoiled for the most part. Growing up my doctors had mostly been Black women, with a scant few doctors of other races that were usually carefully picked by those Black women physicians. Furthermore, when I left for college, I had chosen a historically Black University (HBCU) in Louisiana and all of their medical care was run by Black nurses, doctors and aides.
I had had a major medical scare during my time at that HBCU with a large cystic mass on my pancreas (yes, I tend to grow masses). I had returned home from college and immediately, even though I had technically aged out, was taken under the wing of my former pediatrician who personally selected the surgeon who would eventually remove the mass, my spleen and part of my pancreas. All I will say is he was one of the best surgeons in the city at the time and took care to even be mindful of where he cut to leave minimal scaring. I additionally had my mother, who had briefly dabbled in nursing, right there making sure that I got proper treatment. Even through that long hospital stay, my mother played point on my care, going as far once as to have a nurse removed from my rotation because she didn’t like how she was handling me as a patient. I stayed with my pediatrician until I graduated from graduate school, mostly at her direction, as she shortly retired after many of her oldest patients (like myself) graduated college. However, by the time I dealt with my endometriosis my mother had passed away (another victim to the medical system), my old physician had moved to her retirement destination and I found myself running face first into what I am now going to honestly call out as the racism that is baked into our medical system.
Sara "Saartjie" Baartman and the Ugly Reality of Slavery
It is believed that Sara “Saartjie” Baartman was born sometime around 1789 in what is now considered the Eastern Cape, a birthplace that would later be shared by Nelson Mandela. She grew up on a colonial farm, became part of a committed relationship and had one child that shortly died after birth. However, this was during a time of great colonial expansion from the Dutch. Sara at some point was enslaved, her name changed to the Dutch diminutive for Sara and she was moved to Cape Town. In 1810 Sara "Saartjie” Baartman who was part of the Khoikhoi people of South Africa, was “persuaded” by William Dunlop a ship’s doctor to travel to England “to make her fortune”. Per the contract she “signed” she was to work as a domestic and be “exhibited” for entertainment purposes. She was supposed to receive a portion of her earnings from these “exhibitions” and be allowed to return to South Africa after five years.
Now or course this starts out sounding dubious. Sara came from a culture that did not keep written records. That means she was most likely illiterate. Furthermore, the Cezar family that kept Sara in bondage at the time of the crafting of this contract were experiencing financial difficulties; that hints this was less of her idea. Finally, the way in which she was “displayed” would suggest that, even if she did “sign” the contract, she was unaware of how it would be executed.
Sara was a fascination due to her physical shape which included larger buttocks and her coloring. She was taken to London and “displayed” in Piccadilly. There was at the time in England antislavery campaigns that used her treatment as a rallying cry against slavery. Her owners were put on trial but were able to produce this “signed” document and most likely coerced Sara to say she was treated well. They faced few consequences, but eventually agreed to amend her “contract” to include a greater share of profits and warm clothes, that second fact being telling of what kind of treatment Sara must have faced. She was later sold in France to a man who showcased animals and was often showcased mostly nude, at which time she was given the nickname “Hottentot Venus”. This display would eventually attract the attention of George Cuvier, a naturalist, who asked her owner if she could be studied as a science specimen. It was during this time as a science specimen that she was studied by anatomists, zoologists, and physiologists who concluded she was the link between animals and humans. Furthermore, she was used to emphasize that Africans were oversexed and thus a lesser race. In 1816 when Sara died, causes unknown, a plaster cast was made of her body, her body was later dissected and parts of her body including her genitals were put on display at the Musée de l'Homme (Museum of Man) until 1974 (please note I was born only 6 years later). In March of 2002, Sara’s remains were repatriated to South Africa after the French carefully drafted a bill to not allow other countries to claim “treasures” taken by the French.
I would like to say that Sara’s story is the only instance of how Black people have suffered as part of the medical machine but sadly that is not the case. In 2018 the statue of J. Marion Sims the “father of gynecology” was removed from its pedestal in Central Park. He was praised for perfecting the technique to repair vaginal fistulas, which are holes between the vagina and the bladder. Sims prior story however, until recent years, left out the large number of enslaved women, he “practiced on” without anesthesia as he sought his solution. His work and the work of others helped purport the ideas that Black women are more lascivious, don’t experience pain, and are immodest; a legacy that lasts today.
That is not to say the legacy of poor medical outcomes is only afflicted on Black women. Black slaves were often sold as specimens to white doctors for medical experimentation. Early experiments in inoculations for smallpox also were tried on enslaved populations as the journey during the middle passage in unsanitary tightly packed conditions was a breeding ground for the virus. However, it was a slave named Onesimus who was the “property” of Cotton Mather whom we know from the Salem Trials that would share the idea variolation as a possible way to encourage the natural immunity response to develop while under a controlled environment. Now I will not recount how well it was received, just know racism played a role early on.
Medical Outcomes in the Modern Era
I would like to say the experimentation on Black bodies ended when slavery ended, but sadly that is also not the case. We have the unfortunate 1932 “Tuskegee Study of Untreated Syphilis in the Negro Male”. When the study began it involved around 600 Black men (399 men with syphilis and 201 without) under the rouse of being treated for “bad blood”. The depraved reality is they received very scant treatment in exchange for “free medical exams”, free meals and burial insurance. They planned to have the study run for 6 months but it was extended, even after penicillin was adopted as a treatment it was decided to hinder the men getting treatment and to study them until death. That 6-month study extended for 40 years. In 1974 an out of court settlement was reached and lifetime medical treatment was awarded as part of a class action lawsuit. However, it wouldn’t be until 1997 that President Clinton offered the first national apology, 2004 when the last participant of that study passed away, and the last widow passed in 2009. We are still providing benefits to 11 offspring of those individuals.
In 1951 Henrietta Lacks, a Black mother of five, sought treatment for malignant cervical cancer. As part of her treatment her cells were harvested. It was soon discovered that unlike other cells that had been studied by John Hopkins her cells continued to double and not die. They named these cells HeLa cells and while Ms. Lacks died her genetic materials was used as a foundation for the development and treatment for many illnesses, but this genetic material was taken without her consent and was largely unknown to anyone not part of the medical research community, including her family. It is also why many Black Americans have been leery about using DNA testing companies to find more information regarding their roots, as many did not offer to destroy your genetic material after donation (the company I used in the past did).
The medical profession has been grappling with this complex legacy for years and the racism and discriminatory practices that have come from it. For example, Black patients have been accused of seeking pain medication and denied proper pain management. I myself have been accused of such. The reasoning being that Black people would more likely become addicted or use it to fund criminal lifestyles. I would like to say personally this kind of racism was a one-time occurrence but sadly, in my short time here in California, that is not true. Even when providing extensive medical records the following has been assumed: I am not married, thus have been lectured about safe sex practices (at 35 years old), was ignored for 5 years that my gallbladder was probably failing subjecting me to bouts of daily gallbladder attacks, I have been accused of seeking pain medication even after I had ovary organ torsion (and no not the one I had removed), I have been denied injections of Lupron because it was thought I was using it as a means to not use birth control, until it was found that my endometriosis was in my colon causing the colon spasms that made it hard to walk most of 2019 and a large part of 2020, I am also still unsure what my month long respiratory infection I had this time last year but I will say its wasn’t a cold, flu or pneumonia; however I largely was sent home and would not get a scan of my lungs until months later (there was "new" damage) despite the fact my lungs are scarred, I have had a PE and I have asthma. I share all this to say that these things are still happening everyday to Black people in our communities with less positive outcomes.
It is largely known the fall out of the opioid crisis didn’t hit the Black community as hard due to this racism, as Black people were largely under-prescribed opioids. It was noted that the response was not similar to the War on Drugs that happened when it was largely in urban Black and Brown communities that were suffering from cocaine addictions. These microaggressions, discriminatory practices and outright racist attitudes occur at every level of medical interventions and interactions; despite what levels of education, background, or even medical history that Black person may have, these disparaging outcomes are widely why some Black people put off medical treatment. Even as recently as last year there was the casual suggestion that Covid-19 vaccines should be tested in Africa by French doctors and while many individuals in Detriot rolled their eyes at being part of the clinical trials. Even being a doctor if you are Black is no guarantee of a positive outcome as a Black doctor, Dr Susan Moore, passed away late last year from Covid-19 after documenting how she was not receiving the level of care she should have.
What does all this mean for you and me?
I know I have given you a lot to unpack and think about; I also shared a lot of my own personal medical history as an example. This of course is intentional. These realities may more clearly illuminate why there is often a distrust of the medical profession by Black people. Why many of us have had such poor outcomes during these Covid-19 days and while there is general distrust of the vaccine in the Black community. There is a reason that Black women have higher rates of death during childbirth and when seeking care. There is often a fallacy that these issues only occur to those who “fit” certain stereotypes. I want to immediately dispel this notion that education, how much money a person has, what they drive, where they went to school, where they live, what they do for a living, how they dress, the words they use, what religion they practice or their personal integrity makes a difference; none of these things are shields to how they may be treated when needing medical intervention if they are Black. These are facts! It doesn’t matter if you are a Black person in poor economic circumstances or Serena Williams respectability won't save you from racism or death.
I say all this to lead us back to the main question I know some of you may have…what can you do? Now I will say I am not necessarily encouraging folks to go into medicine if that’s not your calling, but here are things you should consider doing:
- Remember to treat every person that you encounter with the same care and consideration that you would like to have if you were sick or if they are a person you love. This sounds strange to say but the climate you create in your community is reflected in many ways.
- When you see racism happening even if folks seem to be joking, call it out. That may mean if you over hear a person being mistreated at a doctors office or in a hospital say something, use what privilege you have to help.
- Be an advocate or support person for a Black person going through a medical intervention.
- (This may require you to build relationships with Black people which if you have not I encourage you to do so.) If you are going through or have been a similar medical procedure share your experience so they can know if they aren’t getting care that is standard.
- Finally, if it is discovered that a medical professional or facility is offering different levels of care base on race demand better. Make calls, write letters, protest that organization, get the media involved; remember silence is equal to complicity when it comes to racism.
If you are in the medical profession I and many others suggest the following:
- If you are unsure if you are addressing the Black person’s medical distress, ask and be patient if it takes them time to answer you. Black people are sadly not often asked if how we feel about the medical interactions we have. That also means being open to criticism, and being willing to make changes. (This is a universal way to begin addressing racism in any industry or profession).
- Review their charts if you can prior to meeting with them, ask them direct questions about their histories ask them if that history is complete. Additionally be ready to dismiss things that are there, as medical bias can also show up in health records. That note about them calling in too much for pain management, may be legitimate and dismissed by someone who wasn't mindful enough to check their racism before stepping into the room with a patient.
- Build a rapport with your patients so you can know if they are on the level or not. Being dismissive even if it is not intended is obvious. Individuals who aren’t on the level with you will make themselves known pretty quickly but treating every Black patient as if they are trying to pull a fast one is not the way to do it.
Finally, if you are Black like me, advocate for yourself:
- Switch doctors, immediately if you can if you don't think you are getting proper care. Doctors, like everyone else, are merely humans with challenges, bias and distractions of their own. There are some people that no matter how much you ask or beg will not treat you well. So I share with you a gem my father often said to me: someone can give you some “thing”(my father loved more colorful language) but that does not mean you have to take it in your hand. Being respectful doesn't mean losing your voice.
- Get gut checks from others on what their experiences were/are like, if you feel you aren’t getting the usual protocol find out the differences be clear and asked them to tell you why you aren't getting the treatment.
- File formal complaints, if they don’t act, go up the chain. Don't be afraid to shame anyone or any institution into treating you better. Remember social media is also your friend and no one likes a public shaming.
- Know what resources are available to you, there may be community groups/advocates that may be able to be vocalize your concern for you. You may also have friends, family and colleagues that can point you towards better care.
At the end of the day we must not only acknowledge the legacy of slavery. We must be held to account for the past and current climate of discrimination. Yes slavery was a long time ago but we still live actively with that legacy. We need to validate the experiences of those who have fallen through the medical cracks and admit that racism happens everyday both in big and small ways. Furthermore, we need to go a step further by actively fighting to correct it using the resources we have at our disposal.
JOIN US AS WE CELEBRATE BLACK HISTORY MONTH
Add a comment to: Celebrate Black History Month: The Legacy of Sara “Saartjie” Baartman