When I was diagnosed with HIV, I had no idea that new drugs had transformed the virus from something life-threatening to little more than an inconvenience. Today, a daily pill gives me an average life expectancy and makes it impossible to pass the virus on. But there’s one last major health barrier: the social stigma, and the mental health issues it causes. Worryingly, this is so prevalent that it can even come from those who claim to be experts on the topic. In my case, this happened when I disclosed my status to academic mentors.
Three days after my diagnosis, a professor specialising in sexual health contacted me online to share her views about HIV-positive people. She said the virus affected only reckless people, who couldn’t be trusted to take their meds.
I replied that her comments were judgmental and ignorant, contributing to an outdated attitude that forces many people to hide their status. She replied: “It’s not irrational to protect yourself. They should be honest, unless they are unethical”, adding that HIV was a “killer” with “a higher probability of death” than other sexually transmitted infections. I had looked up to this professor, and her comments hurt.
Framing HIV-positive people as “reckless” and HIV-negative people as “rational” is a binary logic that has roots in the political climate of the 1980s. HIV was seen as the responsibility of individuals, rather than of the state to provide adequate healthcare. The inaction of Conservative leaders at the time inspired queer protest movements. Similar tensions have re-emerged recently over whether the NHS should fund PrEP, a tablet (identical to mine) that prevents HIV infection. The tabloids call it a “promiscuity pill”.
Although my PhD supervisor was initially sympathetic about the diagnosis, once I fell out with the professor he began to treat me differently. Until then, we had maintained a close personal and professional relationship, communicating regularly through social media. Our relationship changed quickly from friendly to formal. Where once we had exchanged hundreds of WhatsApp messages, these dwindled to a couple a month. Eventually, all communication was through university emails, focused on work.
Until you experience it, indirect discrimination can be difficult to see, let alone prove. I decided to drop my supervisor, given the emotional pain I experienced when he ignored my messages. But other PhD students in the professor’s sphere of influence also stopped talking to me.
By falling out of favour with the clique’s matriarch, I was ostracised by the whole gang of scholars, perhaps for the good of their own career prospects or publication metrics. Mine, by contrast, have suffered. While my previous publications have been cited by this group dozens of times, my most recent journal article has not been cited once, despite its relevance to their body of research.
My story is not the only example of so-called experts holding discriminatory views. For example, one black woman living with HIV described in a blogpost “an HIV researcher who became disgusted after she revealed her status to him”.
We must remember that HIV is an intersectional issue, disproportionately affecting not just middle-class white gay men, but people of colour, trans women and sex workers. While it’s by no means widespread and may often be subconscious, discrimination and disgust towards those of us living with HIV matters. It will be a barrier to wider participation in the academy for as long as its hypocrisy goes unchallenged.