What I Didn’t Know: A Personal Essay

by Joe Tanzer

I was 9 when Section 28 was abolished in 2003. It was just after this time that I recall first being taught about penis-in-vagina (PIV), heterosexual, reproductive sex – or, as it was known, ‘sex’. I remember asking my year six teacher how you knew when it was over, the deed done, concerned that I would mess up and not produce the required baby. 

There was no suggestion of other options, certainly no mention of gay sex and intimacies. Though section 28 was no longer on statute books, this continued as I progressed through high school. Science, History, English, Geography, Religious Education; even Art and Drama – all had apparently nothing to teach me about LGBTIQA+ identities and intimacies. 

HIV/AIDS was also never formally mentioned. Although queer communities had been educating themselves on safer sex since 1983, and effective antiretroviral therapy had abated the sense of crisis in 1996, there was a complete silence surrounding the recent epidemic. The history of the disease, and the courage and means by which it was faced, was not being passed on. But as I grew, there were some things, some ‘meanings’ of the AIDS crisis, which I did begin to inherit. 

‘That’s so gay.’

‘Are you gay?’

‘Don’t touch him, you’ll get AIDS!’

Having AIDS in the western world meant that you were gay; being gay meant you had AIDS. There was some complicating factor, in that AIDS was also happening ‘over there’, in Africa. So you could be straight and have AIDS, as long as you were black and poor. At the same time, AIDS in the west was now ‘over’; ‘ongoing AIDS’ was happening somewhere else, with a touch of inevitability, and had nothing to do with us. I understood that something dark had happened to gay men, but it was never acknowledged, and this compounded the general sense that gay men were ill-fated. These notions pervaded my life even once I left high school. After I came out to family, I was told: ‘It’s an unhappy life, to be gay.’

This tension between the fear that anyone could become infected, and its casting in moral terms as a ‘gay plague’, permeated the AIDS epidemic from the start. The first concrete evidence of a child being infected through a blood transfusion in the US was published in 1982, so early on in the initial epidemic (1981-1996). In the UK, at least 1200 haemophiliacs were infected in this way, before the screening of blood donations was introduced in 1985. ‘The AIDS innocents’, The Daily Express called them, ‘They have led blameless lives’. This was in contrast to those, of course, who had become infected through certain sexual acts, ‘condemned as producing AIDS’, as John Rechy put it in 1983. 

Another tension of the epidemic was that, although it was a ‘gay’ disease, ‘the button you had to press to get more money was the one labelled ‘everyone is at risk’. This is what the director of the Terrence Higgins Trust found in the UK, where 75% of AIDS cases were gay men. It was the communities most at risk who therefore missed out on targeted care and information. As early as 1985, the majority of New York’s AIDS cases were non-white, and by 1988, this was true of the US as a whole. The disease had started to proliferate down ‘the East Coast corridors of poverty’, heralding ‘the start of the second AIDS epidemic, distinct from the epidemic in gay men’, as Randy Shilts wrote. The appalling apathy of the Reagan and Bush administrations was thus as much about racism as about homophobia. Persons with AIDS (PWAs) were a source of difficulty and embarrassment. Governments dragged their feet. Neighbours were hostile. Deprived of support as equal citizens, nearly all of the help came from the LGBTQ+ and black and brown communities themselves. 

Knowledge of these events is not being passed on. As the AIDS crisis is not considered to have happened to ‘the general population’, it is not in our history classes. Novels and non-fiction works based on this time are considered to be of special interest. It is not being remembered. There is currently no national AIDS memorial in this country, despite a campaign led by Gay Men Fighting AIDS (GMFA). London has no memorial, despite being the epicentre of the UK epidemic, in which 20,000 people died. It is perhaps more likely to have a COVID memorial before it has an HIV/AIDS memorial.

The more I learn about the epidemic, which had been devastating communities for thirteen years by the time I was born in 1994, the more I cannot believe this vast silence. I think about it through my parents, my grandparents, those who connect me to that time. What were they doing? Were they demanding governmental action? Were they battling the pervasive stigma? It could so easily have been me, dying. 

I wonder if it is fair for me to become angry with them. It is harder to hold someone to account for not doing something. For letting something happen. So much happens every day. ‘As crimes pile up, they become invisible’, Bertolt Brecht said. I wonder if this is what it is like to be German, to want to ask difficult and complicated questions of your forebears. I imagine people my age, up and down the country, watching It’s A Sin and wondering, what did my parents do? 

There are countless representations of the Second World War. More are created each year: we are oversaturated. The images don’t seem to reference anything that feels real anymore. It’s A Sin, by contrast, is one of a mere handful of mainstream representations of the AIDS crisis. It almost didn’t get made: BBC One and ITV rejected it. Once writer Russel T. Davies had cut it down to five episodes, Channel 4 finally accepted. It seems that the horrific violence of the war is still more palatable than watching gay men have sex, fall in love, and fight for their lives. I wonder why this is. 

I meet young queers now who don’t know what ACT UP is. They know the pain and isolation of homophobia and transphobia, but they do not know the inspiring story of how people like them came together and changed the world. I wonder why and how it is, that the shame is inherited, but not the pride. I wonder why it is still so often the case, that queer people have to leave their homes, find and forge a new community, before they are able to know their own history. 

There is so much of it. A rich reservoir of anger, pride, love and despair. But it is a closeted history: to speak of it feels like a profound effort. And if I am angry about that, to whom do I direct that anger? Those responsible for me may say, as Richie’s Mum does in It’s A Sin, ‘I didn’t know’. 

When we don’t know our history, we feel isolated and become powerless. And it is very painful indeed to realise – later in life – that none of this was necessary, that there were other ways you could have lived your life. Not coincidentally, one of the most empowering moments for me as a queer person came in 2017 as I watched the film 120BPM. It was the first time I saw the AIDS crisis represented, and the first time I saw a queer person angry at the injustice of their situation. I was twenty two. 

Another important moment came when I recently discovered Sarah Schulman’s Gentrification of the Mind. Reading this book was like being hit by a wave. Winded, drenched in new knowledge, I had to reorient myself. I had never experienced such a sense of injustice on behalf of gay men, or such an uncompromising position on queerness. How did Schulman have the confidence to say such things? I had never encountered a piece of writing arguing as if gay men were important, valued people. As if those that died were an unfathomable loss that has consequences for our culture today. Gay sex and gay lives were not to be discussed as I was growing up, and they certainly did not need to be remembered. And in the face of this stigmatisation, to prove Schulman’s point, I counted myself lucky for whatever form of ‘acceptance’ I got. In her book, Schulman writes, provocatively: ‘Where is our special prosecutor appointed by the president to investigate fifteen years of governmental indifference and its product – the global AIDS crisis? Where is our Nuremberg trial?

Derek Jarman is another who wrote his truth bravely, this time from within the midst of the storm (he died in 1994, from AIDS-related diseases). His memoirs have shown me the power we have when we create our own culture, when we describe our own lives. I then found a novel by Lucas Rocha, who takes us to present day Brazil, and explores the impact of HIV in a world where Undetectable = Untransmittable, for those able to access medication. His work is an amazing testament to how far we have come, whilst reminding us of the ever present, pervasive stigma which still surrounds HIV. 

Things are better for me now. I am filled with courage and inspiration, thanks to these artworks. They are part of my found-family – an idea from queer African- and Latin-American ballroom culture. They have been a life-line, a thread connecting me to those who came before me. Now that I’ve found them, I’ll never let them go. 

References

Lucas Rocha. 2020. Where We Go From Here. New York: Scholastic USA. 

Sarah Schulman. 2012. The Gentrification of the Mind: Witness to a Lost Imagination. California: University of California Press.


Joe (he/him) works in The Bookish Type, a queer indie bookshop in Leeds, UK, and does HIV Prevention work for the charity Black Health Agency (BHA). He is an experienced essay and zine writer, whose work focuses on our inheritance of queer history, activism and community.  A slightly different edition of this essay first appeared in the zine AIDS: Reflections on a Crisis, produced by The Bookish Type. You can find some zines by Joe, as well as a whole range of LGBTIQA+ fiction and non-fiction, online at thebookishtype.co.uk