Stephen’s story
"It's our duty to talk frankly and responsibly about sex."
“I find it extraordinary how people think that HIV has gone away because now the tombstone advert isn’t being shown, and people have largely stopped dying. It certainly hasn’t gone away for me, but honestly, it’s the very least of my worries. I take one tablet a day and I get on with my life.
I’ve been an advocate for people living with, and affected by HIV, since I was a teenager in the 80s and 90s and have been living with HIV personally since 2012. I’m now 52. I have been out there, trying to explain to people what this virus is, how it can be caught, how it can’t be caught, and how people living with it should be treated.
I remember in the late 90s I began seeing friends become positive. But there was always this terrible double standard where people wanted to dictate the kind of sex that gay men should have. It still exists, the stigma around gay sex is just ridiculous, and that was exacerbated by HIV.
Whilst working with Terrence Higgins Trust I encountered a fellow who was HIV positive and had lost his leg due to injecting, and his ex-partner wouldn’t let him see his young children because, she thought that if he’d shared the same cup, or the same cutlery, their kids would get AIDS and die. Abject nonsense! It doesn’t matter how many times you say things, some people don’t want to believe the facts, and they use their own ignorance as a weapon of abuse. I mean, there’s more chance of me being hit by a bus or dying in a freak plane accident than I have of dying of any HIV-related death. It just doesn’t happen anymore. Years of really strong preconceptions and misconceptions around HIV and AIDS are being reinforced because of how convincing the campaign was in the 80s. Those adverts cast a long shadow over people living with HIV. Even now I’ll still get challenged by someone who doesn’t understand what undetectable means – it means I can’t pass it on, it’s that simple. I could start bleeding and chase you around the room right now, and all you’d get is an expensive dry-cleaning bill.
In the 80s, my best friend, the late and greatly admired QC Derek Ogg, founded Scottish AIDS Monitor (SAM) as the first proper resource about AIDS in Scotland. He was an extraordinary man, who in 200 years’ time will be remembered as one of those great reforming Scots for his work in the fields of HIV, human rights and the protection and promotion of LGBTQ people. I am so proud and grateful to have been in his orbit. SAM gave advice to the public about this new disease because the NHS initially gave no information to the public about how they could prevent themselves from catching this thing. And of course, there was Section 28 which prevented any education about homosexuality in schools. So, SAM was an incredibly valuable resource.
SAM started as an information exchange but eventually grew to become a service provider including Scotland’s only AIDS hospice. Bear in mind at this point, if you had HIV you were basically seen as having the plague, so few hospices and homes would take in people with AIDS. SAM was hungry for volunteers, so I joined aged 17 and we did everything from rattling buckets for donations to running safer sex roadshows. It was fantastic, and meeting people with HIV never fazed me, until people who were really young started to die. At that point there was still no viable treatment. The first person in my life to pass away from HIV was a huge shock, because one minute he was there and looking great the next week he was dead. After that I went to a lot of funerals over the years, which was incredibly sobering and very traumatic.
One of the things I’m proud to have done for Terrence Higgins Trust is to go into schools, universities, businesses, places of worship and talk to groups about HIV and sexual health. As far as schools go, I’ve begun to realise that there are huge gaps in our kid’s knowledge base, particularly basic facts about sexual and reproductive health. I believe we are failing our children enormously because we won’t talk honestly and frankly about sex.
I am grateful that we are not seeing people die from HIV anymore, at least in this country. This is only possible because we are in a better equipped, better educated and more benevolent society now. The science is there for people with HIV to live long lives, and for this illness to be stamped out by 2050. I hope the prejudice will become extinct with it.”
Stephen’s story is part of the H is for Human series, in collaboration with the Terrence Higgins Trust, sharing stories of strength, courage and hope from four decades of HIV in Scotland.
For more information on Terrence Higgins Trust and to learn about the work they do, follow this link.
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