World AIDS Day: How generations of queer people documented the HIV/AIDS crisis

A file photo of an ACT UP demonstration at National Institutes of Health in Shreveport, Louisiana, the US, on May 21, 1999. (Photo: NIH History Office/Wikimedia Commons)

In the '80s and '90s, while governments world over decided to turn their backs on the queer people — who were hit hardest by the HIV/AIDS epidemic, societies hurriedly labelled the disease “Gay Cancer”, “Gay Plague” and whatnot, stigmatising and breaking a whole community apart.

To spread awareness about HIV/AIDS, sensitise people, and create an atmosphere where infected people are provided with adequate healthcare and are treated with dignity, the Joint United Nations Programme on HIV/AIDS (UNAIDS) started to observe World AIDS Day on 1 December. Every year, they organise campaigns around a theme. For 2022, the theme is “equalise” — to end inequalities and prejudices that are hindrances in curbing HIV/AIDS.

It is interesting, however, how organisations, which have power and influence, and the impacted population — a community of vulnerable and expendable people — respond to an “action plan”. Because such a plan either remains strong on paper or receives a verbal commitment, never a joint will and directed efforts to implement it. Which is why ever since the AIDS epidemic broke out, several people have documented how the state’s apathy, societal neglect, and rejection from friends and family killed them.

From the 1980s and '90s

Thinking of the sheer record of the crisis, David Wojnarowicz’s fierce memoir Close to the Knives: A Memoir of Disintegration (1991) and Derek Jarman’s Modern Nature: The Journals of Derek Jarman (1989–90) come to mind. Both books have an introduction by the formidable chronicler of the queer past, in particular of the lost generation in the early years of AIDS, Olivia Laing.

These books are polar opposites yet products of the same soil. While Wojnarowicz’s memories are writ large with anger as there is a desire to cut open and lay bare the internal organisation of othering that the society hides, Jarman shifts his focus from decay to the growing things. But a close reading underlines how deeply lonely and disappointed these artists were. For example, an entry from his journal dated 20 February 1990 reads: “I don’t feel sorry for myself, just trapped by circumstances — lying on the bed looking at the white paint on the ceiling as the light fades.”

The "fading" of light and "lying" on the bed symbolise so many things. But, in particular, hopelessness and the inability, if not the end of desire, to affect change. The question, however, did they try? Yes, they did. Did anyone listen? No, no one did. And why? The answer is in an essay from Close to the Knives: “I often wonder whether my being a queer who asserts his sexual identity publicly makes some people see the word "QUEER" somehow written across my forehead in capital letters. And I wonder whether or not that revelation prevents some from hearing anything else I say, or whether or not it automatically discounts anything else I might say.”

Being queer in the '40s

But these are memoirs written at the peak of the AIDS crisis. Here’s one published last year, but of a father who couldn’t be gay when he wanted to but when he did summon enough courage, he came out to his daughter after more than five decades — Affliction: Growing Up with a Closeted Gay Dad by Laura Hall.

Born in 1918, Laura Hall’s father had an illustrious career and a rewarding family. But in 1975, he told his 24-year-old daughter, “Honey, I’m gay… I’ve always been gay.” Something broke inside Laura after learning that her father knew from the start that he must “conceal” this “affliction” at all costs. While so much of the closeted-ness was because of the personal and professional setbacks he experienced in life, it was more because the binary world always understood being queer to be the blow on a familial set-up. They were outcasts, home breakers, and newly labelled disease carriers, which loosely translated to being a disease themselves.

It was only in 1982 that the Centers for Disease Control and Prevention renamed “gay cancer” to AIDS “to reflect the fact that it wasn’t isolated to the gay community”, yet across America only queer people were dying at an alarming rate. When gays were “just wasting away”, as Laura notes her father saying, he joined AIDS Buddy Program to provide care to the neglected. Eerily similar to the COVID-19 crisis, everyone back then was horrifyingly cruel to people who had contracted the disease and didn’t want anything to do with them (gays) or their disease.

Has anything changed in 2022?

One should then ask if this stigmatisation has ended or whether any progress has been registered regarding the attitude of people towards the HIV/AIDS-infected population. Awareness is marginally better, but the discrimination that HIV+ people face in their everyday lives — on dating apps, in office, and from friends and family — continues.

In his moving yet hilarious memoir Over the Top: A Raw Journey to Self-Love (2019), Jonathan Van Ness notes about such everyday attitudes towards an HIV+ person. He writes, “Someone can have their whole world turned upside down because of archaic laws that are written to criminalise and demonise people with HIV — whether it’s people being harassed or incarcerated, or being denied refugee status based on their HIV.” While his HIV infection ended up “helping me learn to love myself so much more than I ever had before”, he recalls being ghosted by a date to with whom he shared his HIV status.

If one reads these memoirs — of being queer in the time well before World War II, during the peak of the AIDS crisis, and now, there’s a world of difference but they’re all victims of an array of common prejudices. In that regard, how much the heteronormative society is invested to “equalise” remains to be seen. For the present and future queer generations, however, words on disintegration (Wojnarowicz), growth (Jarman), or gorgeousness (Van Ness) shall continue to provide comfort and guidance irrespective of what changes in the material world.