I’ve been meaning to publish this for a while but I’m just getting around to it now, so apologies for the lateness/obsolescence.
The view from my testing station at City Uprising. Rather than just provide privacy, the partitions at Unity UMC served as a history lesson and introduction for those getting tested to Unity UMC. On the outer wall facing the rest of the church were hand-drawn pictures and messages from children with sayings such as “We love you,” “God is love,” and the like. It may not have been the explicit intention of Unity UMC’s congregation, but what once was merely an HIV testing event became a PR event for the parish with the addition of these decorations.
Unity UMC was certainly good at advertising itself, but how effective was it in advertising free HIV testing and linkage to care for people who are positive? How much good, or ill, can a religious institution do when it comes to conversations about HIV? Anyone can imagine the moral and philosophical hang-ups that come with HIV prevention and faith-based communities. Those assumptions about “correct” behavior play a factor in the willingness of people to talk frankly about their sex lives in a church, of all places.
But Dr. Durington raised an interesting point. We were chatting during City Uprising about HIV in general, and he was pushing the idea that most HIV infections come from IV drug use rather than unprotected sex. I never considered that possibility because I’ve let myself be blinded by the data - the data says most people are contracting HIV through sex, and that IV transmission has been in decline for a while. I collected my own qualitative surveys of 50 or so patients at the JACQUES Initiative when I interned there that said the same thing. The majority of patients at JACQUES are either struggling with or recovering from drug addiction, but I had good reason to infer (i.e., they indicated as much on the surveys) that they had been infected through unprotected sex while using. I guess I wanted to believe that because of my own personal bias: I collected that information, so I would know it best, right? Not really.
It seems obvious to me now, but before Dr. Durington brought it up I generally dismissed the idea that the epidemiological profiles for HIV in Baltimore are skewed. But of course they are; they rely heavily on self-reporting for their data collection. As did I during my research. As do HIV testers every time we perform prevention counseling. If life, and anthropology, have taught me anything, it’s that people lie all the time, and often for good reasons.
I mentioned a few weeks ago during our City Uprising debrief that HIV testing events in areas of high infection like Baltimore City are meant to weed out the people who are positive. But, anecdotally speaking, we tend to get a lot of people who’ve had multiple tests over the years and generally stay on top of their respective HIV statuses (the biopower is strong with these ones). So where are the positives? We know they’re out there, but they don’t come to testing events. Based on the HIV infection statistics of the area, I’m sure every volunteer at Unity UMC encountered someone who was HIV positive but out of care. And it’s not as if they’re unaware of their statuses - I’d say people either know or have a very strong suspicion that they’re positive because of all the opportunities for mandatory HIV testing, especially in impoverished, “high-risk” communities. So why opt out of testing events, of treatment, of wellness?
I think there are HIV positive people who don’t come forward because of sexualized stigma associated with the disease. But now I’m wondering how many people don’t come forward because they’re entangled in cycles of drug abuse, and choose the drugs over HIV. JACQUES patients have said over and over again to me that they had to choose between HIV treatment and drugs, because it’s impossible to have both. Some of them chose the drugs a number of times before being linked to long-term HIV care.
That was a choice they had to decide for themselves, and each person with HIV who struggles with addiction has to do the same. I can’t help but link the possibility of high, unreported rates of HIV infection among IV drug users to the War on Drugs, its attendant punitive responses to drug use, and its negative influence on harm reduction programs in the U.S.
Generally speaking, the War on Drugs has forced Americans to pretend that drug use is a black-and-white issue with easy solutions. It’s forced governmental agencies and NGOs to operate under zero-tolerance policies, which have the potential to undo all the significant work done in harm reduction in the late 20th century. The criminalization of drug use and the illicit economies that surround them force their members into the margins for fear of imprisonment as well as other legal and financial consequences.
So it seems like common sense that IV drug use would be a big reason why people don’t show up to HIV testing events - not necessarily because of the churches or the stigma, but because of a deeper and more intractable commitment to addiction. What’s troubling to me, as someone who wants people with HIV to be linked to care and recover from drug abuse, is that, if true, that would mean there are a significant number of people living in Baltimore who are being left out of outreach strategies. And that we let ourselves leave people out because of the controversial politics of drug treatment, harm reduction, and the War on Drugs.
To be clear, I did realize during my research that drug addiction was a significant factor in HIV treatment, and that illicit economies like the drug trade play a factor in incidence and prevalence rates. But I hadn’t seriously considered just how much the realities of drug addiction, the unreliability of self-reporting, and the complexities of treating addiction may be skewing the picture we paint of what HIV looks like in Baltimore.
This is so cheesy, but this made me think of a scene from The Wire, when Marlo Stanfield and a convenience story security guard engage in a symbolic battle for turf in the form of Dum-Dum lollipops. The security guard gets frustrated with Stanfield for not playing by the rules, and forcing him to risk his safety to enforce petty shoplifting laws against a renowned and dangerous drug kingpin. Stanfield, a true wordsmith, simply says, “You want it to be one way… But it’s the other way,” and drives away. What Marlo meant was that the security guard was clinging to a set of rules and behaviors that were simply untenable in that world of urban Baltimore. The idealized rule of law didn’t and couldn’t apply to a social order where informal, illicit, and violent ways of life were the only means of survival. This space operates according to its own rules, and those who try to enforce the “one way” will find that the “other way” always wins.
Those of us academics, professionals, volunteers, and general well-wishers for the future of Baltimore want it to be one way. We swoop in with our health fairs, condoms, and hot dogs, and try to enforce one way that involves churches and universities and hospitals. We march into Baltimore with clipboards to narrate the one way that people get infected with HIV. We ignore the other way for a variety of reasons (some good and some bad) and eventually find ourselves in a quandary in which our efforts aren’t making the difference we thought they would.
I don’t mean to accuse anyone of white savior complexes here, but am I the only person who thinks the entire NGO/humanitarian aid culture can at times be a little, uh, patronizing? And that it engage in problematic activities, even with the best of intentions?