In this story: Services and Support /

"HIV is just a tiny part of who someone is."

“Before I worked for Terrence Higgins Trust Scotland, my background was originally in the arts, and I did a couple of arts-based projects around HIV in the 90s, one was about women and the other one was focused on gay men. It required a lot of talking and listening to people living with HIV and incorporating their experiences into dance performances. The first dance piece was about women and HIV and was a community arts project which also involved interactive workshops where participants could talk about what they had experienced after watching the performance.

The arts can provide a platform to talk about something that’s taboo in an open and honest way. The women and HIV piece encouraged the audience to talk to other people about what they thought about the piece, what their understanding of HIV was in terms of risk and transmission, and how they felt it was impacting on their lives. It really helped create an opportunity for conversation that wasn’t there before.

Through my work and connections, I ended up developing the second piece about HIV and gay men at a church hall in the small mining village of Dinnington. The space was offered to me by the vicar, who was a part of the LGBT Christian Association. I knew he was a gay man, but I don’t think this was common knowledge amongst his congregation at this time. I ended up building a really good relationship with him, and one day he asked if we would perform the piece to the Mother’s Union. I was apprehensive and reiterated to him it was quite an intimate portrayal of two gay men and it might be a little bit shocking for them, but he said ‘the reason I want you to perform it is because I’ve got HIV and I want to use this as a platform to tell them my status’. This man was Rev. Simon Bailey, who was the first British priest that I am aware of to tell his Bishop and parishioners he had HIV. He was an incredible man, and it was wonderful to see members of his congregation and friends rally around him when his health deteriorated towards the end of his life, which was really unique.

I always thought I had a relatively good understanding of HIV because I’m a gay man and I witnessed how it impacted on the gay community in the mid-80s, but I think I had some preconceptions of how HIV might have impacted on women at the time. For example I presumed women living with HIV would avoid getting pregnant, and that very few white women would be living with HIV in Sheffield and that they would be withdrawn and visibly unwell. However when I was invited to a mixed support group in Sheffield in preparation for the first dance piece, I witnessed the complete opposite. I saw a close knit community group with a large number of white women who were laughing and having fun while connecting with each other. Two of the women were pregnant and most of the women and men in the group looked well. So, my preconceived ideas in terms of how HIV might impact upon women was completely thrown out of the window.

I think one of the main issues in the 80s and 90s, and even now actually, when you had a HIV diagnosis, your private life also came into focus and the conversation. Homophobia was much more socially acceptable back then, you could be discriminated against and lose your job, it was really bad. If you were gay and struggling with HIV, you often had no choice but to come out. Similarly, this was the case with people involved in drug use, which is still extremely taboo. It just gave people more reasons to discriminate. Thankfully things have improved somewhat, these days there’s lots of rights and protections, attitude are improving and being gay is much more socially acceptable now. In the mainstream anyway.

My greatest fear personally, especially in the late 80s, was that I would lose the very people I was closest to. I wasn’t afraid or worried about being around people living with HIV; I was afraid that they would die. Luckily, we live now in a place where that’s not a reality for most people, because HIV just isn’t classed as a death sentence anymore. When I first moved to Scotland in 1997, people were on around 30 tablets a day and some were told that they only had around 10 – 15 years to live after they were diagnosed. Now, it’s maybe one or two tablets a day and treatments are always improving and most people will live a normal life span. You can now have injectable medications which last around a month, and there is talk of long term acting implant based medication. Although HIV is still around, and it is important that people know about prevention initiatives like PrEP and U=U, HIV should not be seen as the end of the world. It’s important that people don’t make HIV the reason they don’t want to connect or engage with someone. We all have our own unique story to tell and our own lived experience and that’s what makes us different and interesting and important to each other. HIV has definitely influenced my journey and where I am now and has connected me to some of the people that I count as really important in my life.”


David’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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