UK: What My Life Is Like as an HIV+ Trans Woman

Juno Roche is a writer and campaigner whose work has led to innovative research projects around trans desire, trans bodies, and the systemic impact of nonbinary identities within sexual healthcare. She has been HIV-positive for more of her life than not. Juno received the 2015 Blair Peach Award, and her book Queer Sex will be released in April 2018.

As a trans woman living and thriving with HIV for many years now, it frustrates me to observe the extent to which communities remain invisible because data researchers consider them too small in numbers to matter, or too hard to reach, which is the case for trans and nonbinary people in England. Yet it also feels wrong that our place within the HIV spectrum of delivery and perception of need is defined by using data that we know comes from an entirely different group of people — almost exclusively trans women of color living in countries where there is no free healthcare and where they do not have the legislative protections that we as a trans community have in and across the UK. The data we use to quantify our need highlights a far greater issue, which is the privilege we invoke to utilize global data for our own purposes.

I have stood by as people spoke about trans women being high risk in England knowing that we do not have any data. I am fully aware that our having no data is a symptom of our being marginalized — why bother is the thinking when a group is so small to collect data. But in dragging and dropping data from elsewhere that reflects an even greater need, trans women in the UK acquire greater benefits on the backs of other trans women, in countries where such women suffer so much more.

Clinicians, activists, politicians, and lobbyists who work in and around healthcare feel much more comfortable talking about “hard outcomes” and large numerical studies. Hard outcomes have been used to identify, define, and explore most issues and their ensuing prevention campaigns — especially when those campaigns utilize core centralized funding. Data, numbers, hard outcomes, and quantifiable research are the benchmarks for understanding local narratives (say, the correlation between gay sexual behavior in metropolitan centers and the prevalence of HIV); greater numbers enable access to funding streams and priority status. On many levels, it's good science and good economics. But what happens when the absence of recorded data means no access to the funding streams required to collect new and vital data? Read more via them.