In the semester before entering Grad School, I worked as a youth mentor for an HIV/AIDS organization in downtown New York City. This position required outreach, fieldwork, knowledge, and comfort within queer communities of color, as well as group facilitation (all of which were within my wheelhouse). The organization’s mission was one I could easily align myself with and I found the staff to be knowledgeable and willing to explain the rationale of any of the organizations initiatives. My initial criticism was that core staff members were a hard clique to break into, but even that (with time) seemed possible…not realistic for several members, but possible.
My bigger issue was the way the organization dealt with the stigma of HIV/AIDS.
After several weeks of trainings and several more direct deposits, I began to realize my bigger issue was the way the organization dealt with the stigma of HIV/AIDS. Before working at this organization, I didn’t have a primary care physician, and one of the requirements to work with such a population was to receive certain specific tests regularly (such as Tb testing). So out of convenience, I began my regular treatment there.
A few months later at Brooklyn PRIDE, I mentioned to a fellow staff member that I could NOT see the Doctor that was with us in our mobile unit (I deemed him too attractive to “turn and cough”). My coworker half-laughed half-scoffed, “He only treats positive people…you wouldn’t want him.” This moment weighed really heavily on me. How did he know I was not positive? Did he think all positive people looked the same? Why should that matter? I felt like in this moment I bit into the apple. There was a clear line of demarcation between the haves and have-nots in our organization.
I remember my immediate supervisor mentioning that there were staff members that were positive and were receiving treatment within the organization, so this exit from Eden revelation of patient-doctor assignment made me uneasy. In an organization that sought to preserve anonymity, how could they brand the patients with this scarlet letter/ribbon aka the hot doctor? This led me to look at the organization more critically.
Soon enough, I realized that outside of prevention we taught nothing. We preached the magic of getting tested and gave out condoms and lube like candy, like all other organizations did, but that in and of itself seemed to be our sole message of prevention. No, I am not trying to take away the merits of getting tested regularly. Getting tested regularly is wonderful (also, a bit nerve-wracking to be honest) but getting tested is not a way to prevent anything. Collecting bags and bags of latex and silicone based substances is also spectacular…BUT that only addresses PART of the population.
“What about what happens when you find out you are positive?” I chimed in in a meeting with my supervisor. He began to ready himself in his post-test counsel voice, “well…umm…” I cut him off. I began to explain that I felt that maybe if we demystified that experience, then perhaps the stigma could be lessened. Yes, I know this is a bit idealistic, but I would like to know what the next step would be before I take it. Becoming familiar with treatments and terminology seems much more preventative than tossing lube and ideology, no?
With every workshop we led, I tried to be conscious that (statistically speaking) one to several participants in the organization may themselves be positive…so certain language and phrases like “normal” and constant othering when talking about positive people was eliminated. I note the shift in the staff and participant’s language may have only been when I was in the room, but maybe that was a first step.
There used to be a focus on testing and ‘using protection,’ but now there are more and more mentions of “IF you are positive…”
In the few years it has been since leaving the organization, I have noticed a shift in the way HIV/AIDS is discussed in advertising specifically. There used to be a focus on testing and ‘using protection,’ but now there are more and more mentions of “IF you are positive…” and then the discussion of medication and a life after diagnosis. No, I am not arrogant enough to believe this was my doing at all. I am glad that this shift in testing as the sole-source of prevention is no longer king. Testing is key, but in a city like NYC who has only one lock on their door? We need a multi-pronged approach for nearly everything, HIV/AIDS prevention is definitely one of these things.
Yes, The old adage “if it ain’t broke, don’t fix it” may seem fitting here, but when we are talking prevention shouldn’t the concept of taking preventative measures be taken into more than just mere consideration? Combating stigmatizing language is a crucial component of comprehensive HIV education.