One in a series of stories written by the 2017 U.S. Conference on AIDS Social Media Fellows.
I remember my first time being confronted with complicity within the non-profit-industrial complex. I’d left a meeting feeling triggered, as I had other times. It had been a meeting to listen to ways that we could “find” HIV-positive people, and at this time, before the Centers for Disease Control and Prevention began allocating funding to the areas most impacted by HIV, there was a financial incentive to link newly diagnosed HIV-positive clients to care.
I kept thinking about this, and for years I have tried to understand how a system intended to eradicate HIV can use markers such as linkage or HIV-positivity rates alone to assert a job well done. The pathology perpetuated within the walls of non-profits—specifically those without black and brown leadership—is that fear of knowing one’s HIV status is the biggest barrier to testing. These non-profits seem not to consider that state surveillance of black and brown bodies is more likely the reason that both engagement in care and access lag behind for marginalized communities.
During the 21st United States Conference on AIDS, held in Washington, D.C., from Sept. 6-10, 2017, I was reminded that while organizations aspire to lead with race, sometimes organizational practice is disjointed from that mission and/or intention. Throughout the conference, there was a tension between the voices that were leading the conversations and those most marginalized, who felt they were not being heard. This resulted in sporadic protests from Black Lives Matter and transgender conference attendees, including Native trans women, all of whom wanted to know, if we are family, why don’t these leaders see them?
In addition, no clear connection was made between the abuse of state-sponsored surveillance—which oppresses people living in marginalized communities with high rates of police brutality and arrest—and how it undermines those same communities’ trust in the surveillance tools used by the health-care system. Many people who know how police surveillance tools are abused feel suspicious of the surveillance systems of other institutions and do not want to engage them. This is one reason that some people who are positive go to their first appointment but never return.
I went to Capitol Hill to follow a group of delegates who were meeting with House representatives about funding, and my particular group was from Alabama. It was clear in the conversations with mostly Republicans lawmakers and staff that there is a disconnect between the racial and economic disparities that persist in the HIV space and the resources concentrated in the rural South. The inequity in organizational leadership at so many HIV-centric organizations is clear, with mostly white-led organizations determining the care of communities of color. This means that the cultural practices and blind spots and anti-black racism are in the rooms as well.
From a protest led by transgender women that highlighted the lack of data depicting HIV incidence for people of trans experience during a plenary sponsored by Gilead Sciences—we’ve known for years that HIV data has been coding trans women as MSM, which is an example of how transphobia is embodied in research—to the Black Lives Matter protest that occurred the following day, folks on the margins are demanding that we must be centered if we have a fighting chance to end this epidemic.
When seronegative people lead conversations about access for communities that are poz, we lose the invaluable experience and expertise of people who lived through navigating these systems of care. Organizations that are built on interrupting cycles of oppression, yet use tokenism as a means to connect to communities they serve, end up perpetuating the same forms of violence they intend to disrupt.
Moving forward, we must disrupt institutional whiteness, transphobia and sexism to really make impacts that are both sustainable and equitable. That became clearer during my time at this conference. I’m committed to doing my part; are you?
Abdul-Aliy A. Muhammad is a queer, nonbinary community organizer from Philadelphia. They currently work as an organizer with the Black and Brown Workers Collective. Muhammad is also a contributing writer for The Body and a co-host of the weekly podcast For Colored Boyz. You can follow them on Twitter.