Moralism, Plentiful in HIV Prevention, Is the Fuel of Stigma
Moralism is bound to rear its ugly head on the battleground of HIV prevention. It makes sense that "savior-ship" leads the way in this important but misunderstood work. The culture of savior-ship is based on racism and classism: It relies on the concept that those most vulnerable are not in a position to save themselves and that do-good outsiders play the most important role in relieving them of oppression, ensuring their access to medical care, providing food to their communities -- or, in the case of HIV prevention, helping them to stay HIV negative.
Many not-for-profits have white power structures with front-line staff that mirror the communities the organization serves. White leadership has a vision of building legacies off the despair of black and Latinx communities, collecting data on the oppressed and seeing how they can monetize our experiences. They avoid naming systemic racism with academic-speak such as "marginalized communities," "we need to be culturally competent" and "we should understand barriers to care" rather than indicting that the system, at its core, is anti-black and leads to disproportionate infections.
The idea that the know-betters are best suited to engage communities around their "risks" and how to reduce them is the bulwark of prevention dogma. If only "they" knew of the ways to minimize risks, if only "they" understood how condom failure happens, if only "they" knew that PrEP (pre-exposure prophylaxis) existed. We aren't stifling new infections; they persist.
I don't intend to unpack all the intricacies of how someone is more vulnerable to HIV than others. That would entail great attention to power, privilege and social position, coupled with a person's experience with trauma that informs their decision-making. But I do have a judgment about moralism as it pertains to prevention work after seeing it firsthand as an HIV prevention counselor.
Good HIV versus Bad HIV
There is a dangerous narrative of "good HIV" and "bad HIV." How you "caught it" determines the value placed on your now HIV-infected life. It also determines how much empathy space one will allow you to occupy. If you were infected perinatally, than you hold the position of this not being "your fault" -- which means that you get to have intimacy, humanity and understanding in ways that someone infected through condomless sex never would.
Even how we identify risks to develop a prevention plan involves invasive probing. We ask the client to provide us with meticulous data about how many partners in a twelve-month period they've encountered, how many times they didn't use a condom, if a condom was used the entire time, where they had sex, how they had sex or used drugs, what drugs they used, how many sexually transmitted infections they've had previously -- and the data mill goes on. What do we do with the data? Mostly nothing. Some of what's reported we code per grant guidelines; otherwise, we stow these records in boxes until we can shred them in three years (if the person remains HIV negative).
When someone seroconverts, the daunting task of disclosure is made to be a moral obligation. You have to disclose, no matter whether undetectable or not. It is your duty and absolute responsibility to disclose your status always, regardless of the risk (or lack of risk) of a sexual or occupational or drug-related transmission. Someone with "good HIV" has access to victimhood, and the agent or cause of transmission is named perpetrator. In the case of "bad HIV," the infected person isn't allowed to be a "victim": It is their fault that whatever "risky" behavior they participated in led them to an infection. This infection is therefore punishment or God's will to make the wayward come back to a path of righteousness, be it recovery, monogamy or religion. It is a wake-up call to not use your body for pleasure.
Also, now your sexual self becomes criminalized. When you have a date, your friends question: "Did you tell them?"; "Who gave it to you/how did you get it?"; "Are you using condoms?"; "Are you taking your meds?"; "How do you feel?"; "Are you healthy?"; "What's your CD4 count?"; "Are you undetectable?"; rather than "Do you like them?"; "How was the date?"; "Was sex great?" You've been exiled to the land of non-intimacy.
Sexuality Becomes Shocking
People are sometimes shocked at your sexuality as someone with a positive status, and the comments will be "you're still having sex?"; "are they poz too?"; "do they know?"; "how did they take disclosure?"; "you better disclose!"
The words and approach of a prevention counselor who gives a positive rapid result are sometimes what determines whether a person will successfully link to care or not. In that moment what is said, how it is said and who says it matters.
Someone who has never had to grapple with seroconversion can sometimes be the worst at delivering a positive result: the tone, the mistake of saying "it will be OK" or dying from HIV is now a "choice" that hinges on adherence alone, the advice or demand to rush to tell those you've been with -- either sexual or drug-sharing partners.
On the other side of this is the exceptional poz counselor who beat all odds, survived an AIDS diagnosis and now projects their survival onto all the clients they test. The prevention field tokenizes HIV-positive community members, using their poverty or lack of resources as a way to entice them into narrative sharing without thought or care for them, asking them rather than allowing them to set the terms for telling their story. And the need to expose all the trauma that came with seroconversion can re-stimulate that trauma within.
How annoyed we then become if someone who is poz has a lack of care. "If only they were adherent! There is so much support for poz communities."
All Roads Lead to Shame
All roads lead to shame when it comes to HIV prevention. Risks are tied to shame because behavior is determined to be good or bad, and behavior either leads to infection or doesn't. So, the highly HIV vulnerable or those newly diagnosed either have to limit what is talked about in terms of behavior or fear judgment if they are part of a sexual subculture such as BDSM.
If moralism isn't dealt with when it comes to prevention, the rise in infection rates will continue. Moralism is the fuel of stigma.
Abdul-Aliy is a Black Magical Queer, Non-Binary Philly Jawn who was made well/raised well in Philadelphia, Pennsylvania. They enter the work of anti-oppression from the place of Black Liberation and specifically decentering whiteness. They've worked in the field of HIV prevention for six years and currently work as an organizer with the Black and Brown Workers Collective and do anti-oppression trainings with the BlaQollective. Abdul-Aliy was diagnosed with HIV in 2008.