World AIDS Day often means so many differing things to different people, and most likely reflects our own personal experiences and those we have shared with people close to us.
Inevitably, and rightly so, this year will probably be one where we continue to appreciate improvements in treatments and prognosis here in the UK, though shamefully not world-wide.
Importantly we’ll promote and reassure people to be tested for HIV, and if diagnosed HIV positive to start treatment at the right time.
We’ll be hoping that the commissioning of PrEP comes closer, having the power to prevent HIV acquisition for thousands of people, at the same time as beginning to end the HIV epidemic. But whilst we think about and are thankful for all these developments, how much will we seek to understand the challenges that are still experienced by many of us with HIV?
Will we understand and appreciate the continuing need for support and care? Most years I write to reflect the experiences of people I meet and hope to show to those who might not be aware, how living with HIV can still be so very complex and challenging.
This year, one of our service users offered to share their own story of being an HIV survivor, a person diagnosed with HIV for many years. This is not just an insight into history, the impact of HIV continues to be very real for many people. Whilst many will be living more healthily and with more fulfilled loves, many still struggle both through the effects of the past, and how this can diminish resilience for the present and the future. So, whilst remembering those we have lost, and thinking of the advances and greater hope for many of us at this year’s World AIDS Day, please let’s also acknowledge that within our community people are still often disadvantaged and marginalised in very many ways, and often those which we ourselves haven’t experienced. If we truly are a cohesive community, then we should continue to care about and change this.
Gay life thrived in the early eighties. For a young man from a conservative and staunchly religious upbringing, I’d arrived. The painful years of growing up gay were behind me. It was liberation, excess and living life to the full.
From London to New York it seemed liked constant party for the new kid in town.’ It was at one of these parties in Key West that a Scotch guzzling older man leant over and said “You know somethings happening kid – gay men are dropping”. Then it was called it ‘GRID’.
Back in England for my 21st, the feeling of disquiet turned to terror. My father informed me I must phone the hospital. So much for confidentiality, they had told him “I had a dangerous virus”.
The doctor was unsympathetic “well, I’m very sorry to tell you, but you have AIDS”. “Oh God” I said. He then snorted “of course you may well mention God”. I never saw that man. My father spoke in code: whatever it is you have brought it on yourself and it cannot happen here. I fled to London.
Then the horror years. To condemnation and treachery was added the fear you would be hunted down. Like on Death Row you were in the waiting line but also judged as deserving.
Quarantine was mentioned in the press as they published horrific images of appalling deaths. Stigma was huge as was the fear of long protracted, agonising and solitary death. You were constantly on the lookout for that first symptom. There was the guilt for those you may have infected pre-diagnosis, the changing safe-sex message, Clause 28. People were dying in droves.
My way of dealing with it was to go the University and focus on study. I didn’t expect to get through. On my return to London in 92 most people I knew had gone. There were so many sad tales: the ‘final dancer with Kaposi’s sarcoma who refused to stop dancing the nights away. People lived for the day as there was little hope. You were actively encouraged to cash in pensions, property and live the best you could.
I am so thankful to the likes of ACT UP and artists such as Jimmy Somerville who represented and fought for us and the solidarity in the gay community at that time. But there were those treated you as a pariah, the spurned lovers who used it against you even though you had been completely safe. Irrational guilt piled on. A close friend of mine killed himself partly because he was exposed at work for being positive.
I was one of the very few who survived to take treatment, but with significant psychological wounds, guilt and anger. I’ve been so lucky to get support and friendship at Lunch Positive, Terence Higgins and the Beacon.
I’m now finally beginning to unravel what happened. Some of us are the walking wounded, facing financial hardship in later life. I hope cuts will not affect our services. I would never advocate unprotected sex, but our antiretrovirals take the likelihood of transmission to near zero. Some gay men have told me the doctors shouldn’t tell me that. Well, we don’t need further stigma. We know a lot about life, society and people and have a lot to offer the gay community today.
Community Screening by Lunch Positive – We Were Here
Lunch Positive will be holding a community screening of the powerful documentary film directed by David Weissman, We Were Here on Wednesday, November 30. The film is a true story from those in San Francisco who lived through the early days of the AIDS epidemic and for some this will be a reminder and for others an insight.
This community event is part of the 2016 World AIDS Day commemorations and is being planned and put together by the Lunch Positive volunteer team as part of their contributions to World AIDS Day.
Everyone is welcome and the event is free of charge. Doors will open at 6.45pm with a buffet served before the film starts. Donations to cover food and venue hire are welcome.
The screening will be at Dorset Gardens Methodist Church, Dorset Gardens, Brighton. Seating is limited and everyone is encouraged to arrive in good time to secure a place.
Event: Screening of David Weissman’s documentary film, We Were Here
Where: Dorset Gardens Methodist Church, Dorset Gardens, Brighton
When: Wednesday, November 30
Time: Doors open at 6.45pm. Buffet served before film starts.
Cost: Donations please