The 1980s saw a new disease come to the UK: AIDS. We look back to a time where people with HIV or AIDS were demonised and vilified, and remember how that affected them. Plus, we hear from two people who were in Leeds at the time and were affected in different ways by AIDS.
Aleks Fagelman is Project Assistant at Leeds City Council Culture Department. They are also a member of the Preservative Party, a group of young volunteers supported by Leeds Museums and Galleries. Aleks is particularly interested in “queer” history and in the following article they look back to the 1980s AIDS epidemic and how we can remember those that were affected by the disease.
The 1980s could be characterised by perm hairstyles, brightly coloured clothing, and pop music. But there was also a much darker side, especially for gay people. In this article, I shall use the term ‘queer’ as an umbrella term for people who are LGBT+ (lesbian, gay, bisexual or trans). Whilst in the past “queer” was used as a slur, it has now been reclaimed and is a more inclusive term when considering the whole LGBT+ community.
Discovering the disease
In 1981, American doctor Michael Gottlieb recorded the death of several young men from a strain of pneumonia, from which they should have easily recovered. These became the first known cases of HIV/AIDS, which then spiralled into a full-scale epidemic. Globally, over 35 million people have died due to AIDS. Whilst many of these people were not queer, this epidemic did affect LGBT+ people more significantly. Until 1987, there were no treatments for the disease and even with the early introduction of medications like zidovudine, it was still considered to be a death sentence.
One of the major issues with the AIDS crisis is that it was considered to be a disease that only gay men got. However, this wasn’t true: many queer women and straight people also contracted the disease, especially within lower-income families and communities of colour. But because it was considered by the media during this period as a ‘gay disease’, this had huge impact on the way it was treated by governments. Many governments across the world did not take the threat of HIV/AIDS seriously, and were reluctant to fund lifesaving treatments. President Ronald Reagan did not address the crisis until over 20 thousand people had died. It was an epidemic that was ignored, forgotten, and demonised by the public consciousness.
Across the world, people affected by the crisis realized that they had to stand up and fight for their own medical care. They had to fight to be recognised as relevant; that it was worth making sure that they didn’t die from the new disease. This led to movements and marches in the USA - as well as the NAMES Memorial Quilt. The Quilt has become one of the most important memorials of this crisis. It is considered to be the largest community project in the world, with the US quilt alone having over 50, 000 panels and commemorating over 105, 000 people. The UK quilt is much smaller, containing only 48 panels. These memorialisation projects are always community projects, created by and for the queer people . The goal is to keep the queer community alive, to prevent people forgetting what happened during the AIDS epidemic.
One of the reasons that memorialisation projects like this were so important, was the fact that the media was so homophobic. There were headlines like ‘Britain Threatened By Gay Virus Plague’ (Mail on Sunday) or ‘My Doomed Son’s Gay Plague Agony’ (News of the World). Many blamed queer people and their lifestyle for the HIV/AIDS crisis. In 1987, Manchester Chief of Police, James Anderton, said that the gay population “were swirling around in a human cesspit of their own making”. I believe that this opinion of queer people as dirty (and the AIDS crisis of being something that only happened to gay people) actively hindered development of effective medicine and help for the people who were affected.
An HIV diagnosis back
then meant a likely death,
because there was little knowledge of how to treat the virus
There are so many other significant projects to memorialise queer experiences during this period.
In 2019, Jude Woods began to create an archive called West Yorkshire Queer Stories (WYQS). WYQS is an online archive which collates interviews and images from queer people living in West Yorkshire. It was supported by the National Lottery Heritage Fund and the sexual health organisation, Yorkshire MESMAC. 42 of their entries specifically elated to the HIV/ AIDS epidemic and are mainly focused on the stories of people from the crisis itself. A fair number of stories relate to the backlash that was occurring in the UK in the 1980s and 90s, which really impacted the way that people considered this disease. Even when there was treatment, an AIDS diagnosis was considered to be a death sentence. One of the stories in WYQS comes from a person who worked at the health centre Skyline (that still assists AIDS patients to this day). They talk about how people still come into the health centre in tears, believing that AIDS is a death sentence.
“It's not a death sentence to get a positive diagnosis. But there are still the newly-diagnosed coming to Skyline who are quietly crying”
One of the stories comes from someone who worked as a volunteer at MESMAC during the crisis. The volunteer recounts how they met a Romani man who came to get a HIV test. The man was dealing with a lot of issues, being a queer man within the Travelling community. He struggled to understand that having a partner who was HIV positive would not necessarily mean that he would get the disease too. The volunteer talks about how they were able to break down this stigma and help the man. But, a few months later, he was contacted by the Romani man’s partner, to tell him that the man had taken his own life, due to the stigma within his community. The volunteer talked about how hard it was to deal with that, but how it strengthened his resolve:
“In some ways, you know, it’s just really, really made me so sure that I need to make sure that we are fighting for the people who can’t be heard.”
It is this certainty and this statement that we need to hold on to. The AIDS crisis only ended in 1990. Many younger people are unaware of how much damage the crisis did to the queer community. There are so many stories of young, brilliant people dying from a disease because people looked the other way. And there are so many people whose stories go unheard, hidden away by people who believed that their child being gay was more shameful than allowing people to properly mourn them.
The AIDS crisis was a pandemic that was characterized by community togetherness. So many projects like ACT UP were created to support queer people - which were run by queer people. It is unforgivable to let these people who died during this time be forgotten. The most essential thing that we can do is remember these people. Remember the communities that helped queer people during the epidemic. Remember the people who could not stand up for themselves because they were not accepted by their families, their societies, their friends. These are the people that deserve our consideration more than ever. Projects like the West Yorkshire Queer Archive are so important for this. Another essential project is the ‘Overlooked’ project which is in the works by the Preservative Party. They are a youth group of people aged 14 to 24, who work at Leeds City Museum. Currently, they are working on an exhibition which illuminates the forgotten people in history, in the very same vein as projects like WYQS.
So, today, go and find out about someone who might be forgotten. Because, no one is truly forgotten as long as someone still speaks their name.
The following stories are extracted from those on the West Yorkshire Queer Stories website. Many thanks to WYQS for allowing us to print these memories.
In 1981, I used to come home from Leeds up Swinegate, to the station. On the corner of a little yard - I now know it as Blayds Yard - there was a bookshop that sold 'dirty' magazines. One day, one of these magazines caught my eye and for some reason I bought it. And in it, I learnt about AIDS for the first time. It wasn't called AIDS then - 'gay plague' I think they called it. It later became H3, then H4, and then HIV. This article mentioned this disease that was affecting the gay population in California and America. It described that it was a nasty disease and people were dying from it but it wasn't widespread; it was just confined to a certain area. As they put it, it was “as rare as rocking horse s**t”! So there was nothing really to worry about.
Following on from that you started seeing snippets in the main papers. You'd hear about this disease in America, and this disease in America was going round male saunas. Ronald Reagan didn't think much about this disease and he didn't do anything about closing these saunas.
It was a nasty disease and there was no cure for it, and people were dying from it. Other people could catch it besides gay men - and all these little things in the papers. Not a lot, but if you were a gay man and you were looking out for it you noticed them, you took notice of them.
I think the watershed moment was when Rock Hudson died. That was splashed all over the front of the papers, I think in November or October 1985. 'Rock Hudson dies of AIDS'. A picture of Rock Hudson, 59 – a wizened old man! “That can't be Rock Hudson the film star, surely? He's a handsome young man! He's not gay!” He was a millionaire and still he died. I think that was the watershed moment when people took note of the fact that AIDS existed, homosexuals existed and it had to be talked about. Prior to that homosexuality wasn't mentioned.
In 1991, John’s father was taken ill and had to go to hospital. Whilst in intensive care, the family observed a young man dying of AIDS.
It brought home to me how close it was. My mother – she must have known I was gay, but she never mentioned it – looked at me as if to say, “Don’t you get it.” She didn’t say it, but you could feel that she was frightened that I might get it.
I was diagnosed as HIV positive on the third of November 1988, just 27 days before the first World AIDS Day. Kylie was top of the charts that year with “I Should Be So Lucky” Yeah, right! An HIV diagnosis back then meant a likely death, because there was little knowledge of how to treat the virus, and the effective medication cocktails didn't appear until 1995, seven years later. People were dying around me. Constantly getting the black tie out to go to another funeral. And the funerals could be terrible. The partner of the deceased had few rights, unlike today, and could be shunned by the rest of the family and kicked out of the shared home with little or no chance of retrieving their belongings.
Back to 1988, a big year for me, and the birth of my nephew. I was diagnosed a fortnight before he was born. I clearly remember sitting in my car in the hospital car park waiting to go in and see the new baby and proud parents. In the car, I was quietly crying. The tears were rolling down my face, as I was thinking that a new life had just come into the world while I should be preparing to leave it.
But, 30 years on, funerals are few and far between. The pills do work. The doctors know how to treat us. It's not a death sentence to get a positive diagnosis. Things have evolved and we are no longer in a crisis. So I'm a bit happier. But the situation could be described as fragile. If something happens to stop the HIV drugs being made or supplied, I will die, along with thousands of others. And politicians are still coming out with ignorance and homophobic comments. Stigma is still around.
There are several stories in the archive that refer to the AIDS crisis in Leeds. To read and listen to these stories and find out more about West Yorkshire Queer Stories go to www.wyqs.co.uk
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