AIDS Since the 80s: ‘Society is busy moving on and doesn’t want to talk about it, but a community had never gone on record’
PUBLISHED: 12:00 18 December 2017
The project has filmed 100 in depth interviews with people whose lives have been touched by the illness in a bid to abolish the stigma
With today’s sophisticated treatments for HIV and AIDS, it’s easy to forget the panic and prejudice when the epidemic first emerged. But hundreds of survivors have now lived with their diagnosis for decades, often in silence.
The AIDS Since the 80s Project has filmed 100 in depth interviews with people whose lives have been touched by the illness in a bid to abolish the stigma and commemorate a lost generation.
They have been donated to the London Metropolitan Archives and will be turned into a feature-length film to “distil the story of HIV in the UK”.
Project leaders, Archway film maker Adam Roberts and Paul Coleman also commissioned Survivors, an exhibition of portraits which hangs at City Hall until January 5. Danielle van Zadelhoff’s images depict gay men, women, and those infected with contaminated blood.
“These long term survivors living with HIV are not types or generic sick people but reflect the diversity of those affected,” says Roberts.
“These portraits ask us to question our views and make it impossible to lapse into lazy judgements. What comes across vividly is the marvellous sense of presence, of being alive. They also show what it is to live on after a traumatic experience, and the ongoing challenge of living into older age with a complex health problem.”
The interviews reveal the ignorance and prejudice of the early 80s, a time when sufferers couldn’t disclose their status for fear of losing their jobs or health insurance, when death certificates were doctored and funerals hushed and small.
“All of life is in these interviews,” says Roberts. “Take the gay community, it was teeming with clubs and high energy disco then this terrible thing happens. You can only understand how terrible if you understand the world in which it happened. London’s gay community wasn’t vast and many lost their entire social circle, people were terrified. Your lover suddenly falling ill, the outrageous homophobia in the press, visiting friends in hospital, what does that do to your sense of self?”
Roberts and Coleman had personal experience of loss.
“Some were dear friends, some colleagues, what struck us was there were no funerals. People at work were suddenly gone. You’d find out they’d died and the family had a small private ceremony with no way of saying goodbye. There was such incredible fear of contamination they’d be buried in concrete coffins.”
Interviewees tell of being “given a certificate saying you are going to be dead in six months”, or getting the doctor to sign any cause of death but AIDS. “There is still a silence,” adds Roberts. “Society is busy moving on and doesn’t want to talk about it, but we realised a community of people had never gone on record.”
There are also uplifting stories says Roberts: “Descriptions of funerals in hospices which turned into parties, late night visits to the hospice by Princess Diana who then played cards.”
Or the Buddy system where volunteers trained to befriend and support strangers.
“While a lot of people we knew had lost their lives there is an issue of living with HIV. People think it’s fine, you can take Prep, everything’s marvellous. But that’s not the whole story. People have endured pretty gruesome experimental treatments before effective therapies came in. In a way we are all waiting to see what will happen to people living with complex health challenges into old age. With specialist support services being dismantled we are losing those high levels of expertise. The future is a worry.”
If the early years of AIDS were shrouded in stigma and silence, the interviews also bring social history into the light.
“We wanted to find out how did society react? what was the impact of the virus on them and those around them? It’s a story about a society which had an uneasy relationship with drug use, homosexuality and sickness, which suddenly found itself looking at a devastating illness. What’s interesting is that society changed to a more holistic view of the patient. It showed the best and worst of society but things can change. Society has moved on and while stigma still exists. It can be confronted and refuted.”
It’s been an inspiration project for Roberts too.
“You’d think after 100 interviews I’d have heard it all but once you get into the nitty gritty a life springs out and takes you by surprise it was humbling to share in these testimonies so freely given. There was no sympathetic ear for these experiences in the 80s but now we have listened. We reach a time when you start to reflect and try to understand. Art is a way of interpreting experience and representing it back to us.”
The City Hall exhibition runs until January 5. Information here