by Erica Woodland
There is no way to start but at the beginning which requires a clear and discerning look at the foundation and history of the medical (or so called health care) system/industry itself. The inherent mistrust that exists between black folks and healthcare providers and institutions is often used to place blame on black people themselves for their sickness and death. However, the reality of the violence, abuse and torture that black people have endured in the name of “medicine” is unspeakable, ignored and at best seen as something of the very distant past.
In Medical Apartheid, Harriet A. Washington, chronicles the history of medical experimentation on African-Americans, and argues that this so called history is actually the basis, culture and framework from which modern medicine operates. Beyond the popular example of the Tuskegee Syphilis Experiment, there are countless other known and well documented abuses of the physical, emotional and spiritual integrity of black people dating back to colonial times. In fact, it is almost common knowledge that the “forefather” of gynecology, J. Marion Sims, who enjoys continued praise and iconic status, developed gynecological techniques by practicing unnecessary procedures on enslaved African women without anesthesia in order to offer treatments to white women that minimized their pain and exposure to unsafe conditions. In Medical Apartheid, Washington argues that black folks carry the burden of medical research but rarely get access to any of the benefits.
This is the context in which HIV positive people navigate their health and wellness. The impact of this unacknowledged trauma that has been passed down over generations and recreated over and over in the healthcare system has rendered the structures that perpetuate oppression invisible. For many of the black people I have met who are living with HIV, their diagnosis was something they felt was predetermined by virtue of being black, queer, gay, bi, poor, struggling with substance abuse, and engaging in survival sex. The message they have gotten from healthcare providers has been, “You will get HIV at some point so just accept it.”
The irony of this is that when many folks finally get diagnosed, it often opens up access to resources that were not available to them before. Resources that many folks have struggled to access to improve their well-being and stability such as housing, food, transportation assistance, health care, medications, mental health services, and community. These much needed basic resources are known to decrease an individual’s “risk” of contracting HIV in the first place. The initial shock and confusion of receiving an HIV diagnosis is difficult enough, but then there are all the very real fears of the system that surface – Will I be tracked on a list by the health department?
Will these medications really help me and if so what about the side effects? Are these meds even safe or is this another Tuskegee moment? From there, folks are then lectured about how dangerous it is to engage in sex and that they must use condoms or start pRep so they don’t go and infect the whole wide world. Seen as “vectors of disease”, many of the HIV positive black folks I have worked with describe intense feelings of shame and sadness about the fact that they may have or will in the future infect someone else. This narrative completely places blame and responsibility on the individual instead of supporting people in the larger context which has in many ways set them up to be in the very situation they are being held responsible for. Instead of addressing the real health impacts of racism, misogyny, homophobia and poverty, to lack to access to housing, healthcare, self-care or education, we get medication adherence, condom usage, partner disclosure and testing; which reinforces focus on individual behavior while completely absolving the structures that ensure that risk for HIV will continue to impact the most marginalized in our society.
This history was not yet known when I entered Brown University in 1998 for my undergraduate studies with the dream of becoming a doctor. A science nerd since early childhood, I had a strong faith in doctor’s ability to help people. I recall a biology class I attended around 2000-2001, where the professor was discussing the HIV epidemic and where it comes from. The theory that HIV originated in Africa likely due to African people engaging in sexual acts with monkeys was not new to me, but I was shocked that this racist theory was being taught in an ivy league institution as a viable explanation for the origin of HIV. This unfortunately was one of many examples of the ways anti-blackness was woven throughout my experience as a science major at Brown, which ultimately led to me abandoning my last semester of organic chemistry for a course on the Black Panther Party.
Returning to Baltimore after college, where the impact of anti-black racism and poverty are obvious and highly visible, and medical research institutions like John Hopkins boast about cutting edge treatments and technologies, I began working with black poz people who would never have access to basic health care or adequate treatment for HIV.
Much has changed in the field of HIV prevention since I began working in HIV prevention back in 2003, but still too often I hear stories of providers who do not seem to care about people of color (especially black folks) living with HIV and systems of care that take a team of case managers to navigate. And yet, access to quality health care is a basic human right that we require and deserve. How do we hold this complexity when we work to support black people living with HIV and AIDS? Despite the history and continued neglect and marginalization that we experience, many of us still want to seek treatment and preventative care from this system. It is way more complicated than expecting black folks to get over some outdated mistrust of the system or holding up the “compliant” patient as the example when good care goes right. The next part of this series will explore how the intersection of anti-black racism and HIV is navigated in social justice movement spaces specifically racial and gender justice.