Accessing competent care is another hurdle Black folks shouldn’t have to navigate

Content Warning: Medical Violence

My nana, Ella D. Martin, was a nurse from Greenwood, Louisiana who slept with medical books underneath her bed, and sometimes her pillow. And no matter the time of day, Nana would receive medical emergency calls from folks all over the world, well until she was 80. Though she worked in the hospital for many years, she never trusted doctors. She’d seen firsthand how racialized medical violence and neglect were requirements for “care” and always suggested that the hospital be the last place we go.

When Nana was diagnosed with peripheral artery disease (PAD) after “complications” from diabetes, the doctors suggested her right leg be amputated. She refused and said that if it was time for her to go, “shouldn’t nothing get in the way of that.” 

We wanted her to live and after several talks, she agreed to limb amputation surgery. I thought that since the surgery saved her life, she’d have a different view on hospitals. I was wrong, she continued to maintain that hospitals are death traps and we should never entrust our care to them.

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Medical mistrust is real and medical violence against Black and Brown folks, oft presented under the guise of progress, is one of the tenets of white supremacy. 

The dozens of unethical and illegal experiments in the last century have solidified the legitimacy of that mistrust. These include the Tuskegee Experiments, which lasted from 1932-1972, where Public Health Service officials followed the lives of 600 Black men in Alabama. These men, who contracted syphilis, were either not told their diagnosis or were refused treatment and passed the disease on to their family members, including their children. Over 200 men died from the disease and lack of treatment.

In the early 1950’s, Dr. Albert M. Kligman, with the support of University of Pennsylvania School of Medicine, began experimenting on “colored” prisoners in Philadelphia. These experiments included inoculating prisoners with ectodermotropic viruses: wart virus, vaccinia, herpes simplex, and herpes zoster. In Kligman’s studies he notes, “I felt like a farmer seeing a fertile field for the first time.” 

Between 1933 and 1973, 5,000 Black women, including inmates and unwed mothers, were forcibly sterilized. These eugenicist attempts at population control disproportionately impacted Black women, who were threatened with losing their government aid if they refused to comply. The sustained reproductive and sexual violence, racial terror and loss were all enacted and produced by the state.  

And in 1927, Black children in Lyles Station, Indiana were exposed to radiation experiments. Their families had been approached by local health officials and promised a new experimental treatment for dermatophytosis (also known as ringworm). Instead of being treated they were exposed to high levels of radiation that left them in extreme pain and physically affected their heads, causing long term lesions, dents and scars. 

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In the last few months, local reporters and community members have attempted to highlight how COVID-19 is detrimentally impacting Black communities. Like the experiments mentioned above, I worry that widespread data coverage will continue to be slow moving or couched in maybes. 

After speaking with Black patients and hospital employees in clinical and non-clinical capacities, they all shared how their physical and mental health were constantly deprioritized. The conditions and intentional neglect that so often happens in these hospitals, intake and other “care facilities” on a daily basis are made possible by racial and class hierarchies. And the privatization of COVID-19 supplies is made worse (and clearer) during this pandemic. 

Right now, Black folks are actively denied access to COVID-19 tests, medications and necessary resources that could extend their lifespan. They are visiting hospitals under the expectation or promise of protection, relief and sanctuary, and instead are being turned away, left to die at home.

A world where accessing competent care is another impossible hurdle thrown at Black folks only furthers the reality that Black life, in the eyes of the medical industry, is trivial. This reality coupled with the fact that doctors and scientists are proposing that COVID-19 vaccines be tested on people in Africa is emblematic of what our grandmothers have always tried to tell us: we aren’t even an afterthought. 

On March 22nd, Belly Mujinga, a 47 year old British transport worker and her coworker were spat and coughed on by a white man claiming he had the coronavirus. Within a few days, Mujinga and her coworker fell ill. Mujinga was put on a ventilator for eleven days and died on April 5th, 2020. 

In Queens, three non-clinical hospital workers who were adamant about passing out masks and other protective equipment to community members died within weeks of each other. 

According to BBC news, Black folks are four times more likely to die from the coronavirus than whites. But it isn’t just numbers. It never is. This world does not protect nor appreciate Black life.

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For Bay Area based musician, producer and composer LeahAnn “Lafemmebear” Mitchell, accessing adequate and timely medical care during, and even before, the pandemic as a Black trans disabled person has been one of the most difficult experiences of her life. After finally being approved for health insurance and surviving a serious car accident that resulted in the immobilization of her right foot, Mitchell contracted the flu. 

At the end of February, Mitchell’s symptoms worsened and in March she was advised to quarantine for 14 days. For nearly three months, Mitchell was ping ponged from virtual physician to virtual physician, with a couple of in person hospital visits in between. During that time, she was prescribed medications that left her feeling disoriented and nauseous. When in conversation with physicians, she was regularly cut off mid sentence and her concerns weren’t taken seriously. 

“I don’t like to think about the fact that the world might hate me [for being Black],” Mitchell reflected on her thought process during the frustrating experience. “Sometimes I actively try to find every other reason [for their response to me] before I get to that point. Because I know that if the issue is racism, suddenly the white people in the situation become the arbiters of truth, and what is good and right and wrong.”

To this day, LeahAnn is still sick and hasn’t received a clear answer on what is going on with her respiratory system. She’s been given explanations from physicians like sleep apnea and acid reflux (from a physician who later admitted that he had misdiagnosed her after looking at the wrong patient’s x-rays) to “slight pneumonia.” Her lungs and heart are still inflamed. So while we have always known the consequences of not taking Black folks’ concerns seriously are dangerous and fatal, it becomes even more necessary that Black folks be surrounded with care, advocacy and resources. 

“I think people need to ask questions about the efficacy of testing,” she told me. Because I technically tested negative three times for coronavirus and yet, I [have] experienced all the symptoms.”

As of now, Mitchell has been confined to her house for nearly four months, and has spent two of those months ill with symptoms that cause her to be in nearly constant pain. Unable to sleep, unable to sing or livestream performances like other artists in lieu of her cancelled paying gigs, and still with no cogent answers from professionals as to why she is so sick.             

Black bodies are testing sites and grounds for study, examination, hypotheses. To add insult to injury, Black folks who’ve died and/or suffered from COVID-19 are heralded as heroes who’ve made the ultimate sacrifice. It all feels like propaganda to me. 

When we situate the reality that Black death (in all its conditions and iterations) is a requirement for the various industries fueled by capitalism, white supremacy and white imagination, we begin to understand that our grandmothers’ warnings are always relevant and necessary. May we heed how their lessons are always in direct conversation with what they have known this world to be and use it as an invitation into how we must build worlds that are dependent on our safety, even as we dismantle everything else.