When I Refused My HIV Medication as Protest, Uncomfortable Truths Emerged
I learned so much about how people view autonomy when I went on a #medstrike. I stopped taking my anti-HIV medication to amplify the community demands that the CEO of a Philadelphia nonprofit step down, and although the combined and escalating efforts demanding the departure of the head of the Mazzoni Center were successful, and I was able to resume my treatment, I learned that people felt they were entitled to my body and health status. And that made me angry.
During my med strike, my family and friends were concerned about my health and that was OK. What was not OK was my older sister suggesting that she'd find out where I was and force my medication down my throat. On social media, people had mixed reactions to this form of resistance and would suggest other tactics as if I hadn't thought through this entirely. One person even remarked that I should consider a hunger strike instead.
Some people suggested I shouldn't be sexually active during the time I was on this strike, and others were very adamant that condom usage should be a high priority during this period. I didn't really process all of what was wrong -- but I did notice that because of HIV stigma, many people didn't know how to show up in support of someone poz. This included people who work in the field of HIV prevention.
Bottom line: You don't get to know my CD4 count, and you don't get to police my intimacy.
News and Not News
I was recently in New York to attend an awards ceremony to honor the work of Ernest Owens, the editor of G Philly, a leading voice in confronting racism in LGBTQ spaces. The editor-at-large of The Guardian, Gary Younge, gave a powerful keynote speech in which he unpacked everything from racism to how news is framed. It was eye-opening and enriching to bear witness. You can listen to it in the clip below, starting at minute 20:48:
What really caught my attention was Younge's assertion, "dog bites man, that's not news, man bites dog -- that's news!" There were many journalists there winning awards for their coverage, spanning Ferguson, the war in Iraq and our borders. Most of these reporters were white. I saw photographs of black poverty, our bodies on beds taking respite from the heat in the Midwest, or photos of our young people playing or looking traumatized.
Blackness under the auspices of social justice movements has been used to commodify our struggle. People weep about the disparities and speak for us often. Moving the needle toward progress does nothing for black suffering, but impacts the careers of journalists in real ways. They walk away from these narratives winning Pulitzers while we still die at the overreaching racist hands of the state.
Later in the keynote Younge described incidents of dog bites from police canines in Ferguson and that overwhelmingly the dogs would bite black people. Younge challenged us to listen to how newsworthy that was: dog bites man -- that's news! What has caused this to occur?
When I heard him explain how what's seen as "newsworthy" is privileged by who is telling the story, I thought about how AIDS service organizations determine what's valuable for communities of color, even though their leadership is often mostly white.
News outlets determine what's news based on the standard of "man bites dog" -- interrogating why the dog bit the man or why the owner of the dog would continue to allow this behavior. This is much the same way HIV prevention continues to just focus on behavior without understanding the systems and trauma that make you more HIV vulnerable. It looks like the repeated demand to address the social determinants of HIV vulnerability by community members. Shouldn't the community determine or help frame interventions that impact them, instead of experts imposing their expertise on the community to ensure "fidelity" but not actually impact outcomes?
I found firsthand, while working on a CDC contract, what it feels like. The Social Networks Testing Strategy, for HIV testing services, has had effectiveness in white men who have sex with men (MSM) populations in San Francisco, especially the Tenderloin District. I was the coordinator of a program using this model at Mazzoni Center and realized quickly that keeping fidelity of the program meant that I had to ignore the real differences between MSM populations in S.F. and Philadelphia.
The Overlooked Violence of Language and Tokenism
Having experience with the sensational, we travel to outrage rather quickly when overt trauma is caused by racist recordings of white cisgender gay men uttering the n-word, but a nonprofit leader saying that her staff and youth are "primitive" isn't as violent?
Isn't it tokenism that allows a nonprofit leader to use HIV poz communities and their trauma to seem more relatable to community?
Allowing abject voyeurism to be your "golden ticket" isn't leadership nor savior-ship, it is plain old tokenism. When I see the glossy photos of poz people -- mostly black -- uttering how this organization saved their lives, it makes me sick! Do these agencies think because they are doing their jobs that they are deserving of NO ACCOUNTABILITY? When we confront these institutions with demands, they scream and cry and I imagine the white lady from The Color Purple, saying "I was good to you people!"
What white people are learning is when whiteness is moved from the center, there is an inability on the part of the power structure to control the narrative.
Sometimes truth speaks, the truth of systems comes to light and there ain't no going back. Slavery wasn't a comfortable system, so why do white people imagine that black liberation will be comfortable to them? Why do people want to control the narrative of my blackness, and control my body all the way until the moment it rests in the ground of a stolen land?
These coming days, months and years will be uncomfortable for many, but my experience in this world is built on my discomfort. During my med strike I learned that discomfort and vulnerability are resistance.