Matthew Wilmot, PhD is a Community Health Educator at the AIDS Education and Training Center at the Ohio State University Wexner Medical Center. He is also Vice Chair of the Columbus Chapter of the Black Treatment Advocacy Network (BTAN) and a Mental Health America of Ohio Board Trustee.
The four decades since the beginning of the HIV epidemic have brought lifesaving medical advancements in treatment and prevention. The primary advocates for these advancements have been Black LGBTQ activists across different racial and gender lines. When it was time to collect the victories in the form of living well with HIV, however, the face of the victor can be described with the same four adjectives: “gay”, “white”, “cisgender”, and “male”. This fact is best illustrated by looking at the group who first received AZT, the first FDA-approved treatment for HIV/AIDS, and Truvada, the first FDA-approved, once-a-day pill to prevent the acquisition of HIV. While White cisgender, gay men have benefitted from these advancements, Black transgender persons have reaped few rewards and even less recognition from their path-breaking and innovative community-level work.
Despite being severely impacted by the HIV/AIDS epidemic, the Black transgender community was the first to organize information sessions and promote behavioral methods for preventing the spread of the virus. They also challenged the government’s willful ignorance about the devastating impact of the virus. Activists like Marsha P. Johnson played an integral role in this work. Known for her role in the Stonewall protests of 1969, Johnson’s reach extended into the early years of the HIV/AIDS epidemic. In the late 80s and early 90s, she brought attention to the spread of the virus among sex workers, many of whom were transgender. Johnson, herself, was also living with the virus. Simultaneously, transgender persons highlighted the resiliency of their culture through Madonna’s iconic song Vogue and through Jennie Livingston’s documentary, Paris is Burning. Watching Paris is Burning, Americans witnessed the health concerns Black and Hispanic transgender people experienced (e.g., HIV, sexual violence, poverty). Unfortunately, the work of these pioneers in the struggle for HIV Care in the 1990’s is largely dismissed, ignored or simply forgotten.
Today, the trend in HIV incidence rates shows a significant gap between White cisgender gay men and Black transgender women. Black transwomen have not seen a significant decrease in the number of new infections since 2000. Even with advancements in life-saving treatment, Black transgender women are less likely to be linked to HIV care, remain in HIV care, and achieve viral suppression. Rather, the system of LGBTQ healthcare struggles to incorporate the specific needs of transgender people. Research on the effect of HIV treatments rarely provides recommendations specific to the needs of Black transgender people such as, hormone therapy, and gender-affirming surgery. For Black transgender persons, their interests and numbers are lumped in with the larger Black LGBTQ and the predominant White transgender population.
Profiting from the labor of Black transgender women living with HIV (is another example of the ways in which we pretend to understand the marginalization of Black transgender people and use their stories to our advantage. While there may be overlap in experiences that Black transgender people have with other LGBTQ communities, the sole emphasis on that shared perspective has only served to minimize the presence of differences. It should not be up to us as privileged individuals on what damages to focus on, because there is real and distinct harm faced by many in the Black transgender and gender non-conforming community who are living with HIV/AIDS. It is up to us to begin to listen, study, and help correct this specific mistreatment. Sponsorships and grants directed towards HIV research, prevention, and care should be granted, if approved, by an official organization/body that represents the varied interests of transgender persons of color. Their feedback and approval must be sought without coercion or for possible financial gain from the stakeholders.
Many people outside of the transgender community fear that the concerns from Black transgender persons living with HIV conflict with the American Dream. The American Dream that we admire because we believe it to be a “race to the top”. They fear that the rights owed to the Black transgender community will infringe on what many cisgender people believe are their rights when, in fact, they are privileges. Those in a place of privilege can sow fear based on a belief in a zero-sum game. That fear is based on nothing but prejudice against transgender communities and those living with HIV. The history of HIV in this country has taught us that it is now time for those in privileged positions to extend that privilege and leadership to Black transgender persons living with HIV. One could argue that the continued deaths from HIV/AIDS among Black transgender persons in the United States is another consequence of the competitiveness and prejudiced beliefs that impact healthcare. These beliefs are that those at the bottom of the social ladder are responsible for their healthcare, that competition builds success through a Protestant-like work ethic, and that the system is too perfect to have failed them. We perpetrate these beliefs because it is easier to attribute the remaining lack of progress in fighting the HIV epidemic to character flaws in people than to point to flaws in the healthcare system’s decision on who deserves to survive HIV/AIDS.
It is easier for us to discount the specific concerns of a particular marginalized group when the face of HIV appears to be that of another. The Black transgender community has taught us that this tendency to put a privileged face on a disease is not sustainable if we want to end the HIV epidemic. They have also taught us, through creative brainstorming and tireless advocacy, that it is going to take more than cutting-edge treatment to give this system of HIV care a makeover. It is going to require us to have uncomfortable conversations with ourselves and taking risks to ensure that Black transgender communities are leaders in the next stage of systemic change in HIV care and prevention. As privilege patrons of the healthcare system, it is now our turn to sit back and experience the necessary discomfort that a systemic makeover (and any makeover for that matter) requires because, in the end, we will come out on the other side looking better than when we first started.
Previously Published on Historian Speaks