Positive Voices Craig Hanlon-Smith speaks to John Jaquiss – one positive voice living among us

Terrence Higgins Trust’s (THT) Positive Voices programme consists of a team of volunteers who provide talks and education sessions to schools and colleges, corporate and public sector workplace audiences, about their personal experiences of living with HIV.

These volunteer, trained speakers cover HIV prevention and safer sex messages and share their own experiences of living with HIV. John Jaquiss was diagnosed as HIV-positive 19 years ago and is now one such enthusiastic volunteer.

Why did you get involved in the programme?

“I wanted to give something back. I can now be more flexible with my time; I wanted to put my energy into something. I’m a long-standing patient at the Lawson Unit in Brighton and one of the receptionists there said I should get involved with the education programmes, so I did.

When I first went into a school with THT it was the first time I had been into one since I left school all those years ago. And I was there to share my story. I found it empowering and it built my confidence to openly talk about my HIV.

I was interviewed by THT, then we were trained in a classroom situation. The training is online now, which actually changed before Covid. It was about understanding HIV and sexual health facts and included other people in different support services and outreach groups with THT. They help you develop your own story and to tell that story with impact. The first time I told my story I was watching the audience, which included the teacher, and I wasn’t too sure how it was going as there was a look of shock on their faces. Immediately afterwards it was the teacher who said ‘John that was fantastic’ and I realised how sharing our stories really stirs the emotions.

I have known since then how important it is to share. “For years I wasn’t able to tell my story at all, or even to say to people that I was HIV+. These feelings exist because, while education has improved, we’re still on a very long journey. I have friends who are HIV+ and have been for longer than I, but their understanding of medication is from the early 1990s. There’s so much misinformation still out there. I celebrate being this confident in standing up and talking to people. The more we talk and educate the more we break through these barriers that still exist.”

Which aspect is the most rewarding?

“Seeing people’s faces when I share, questions they ask and coming up to me and saying ’thank you’. People who have been listening, wanting to share their own personal stories with me. At one university a student came to me and said that in sharing I had touched a very personal story in him. He had an older uncle with a similar tale that he could not share for religious reasons. He said he was leaving the event to go and phone him for a virtual hug, and that’s great.”

As the programme has moved online, how has that experience changed?

“It’s a very different experience. You have to remember to look at the camera and not the screen to maintain that personal connection. I’m used to standing up and moving around and bringing real energy to the piece. It’s quite different online but it’s part of a journey and we really have achieved a great result. We are not losing impact and we’re still getting out there, if not more so as we can easily reach a wider audience.”

How has being involved changed you as a person?

“It’s empowered me. Encouraged me in whatever environment not to be afraid to say: ‘I am living with HIV, I am on effective medication, I cannot pass it on.’ Last week at my gym, I was trying to encourage some 19/20-year-old guys to wipe down the equipment after use because of Covid, and one of them said, ‘I’m not sure I believe all we’re being told about this virus,’ so I told him I had lived through an epidemic before and I too thought I was invincible. I had lived years as a gay man and not contracted HIV and now I’ve been living with HIV for 19 years and it was a powerful moment for those guys and me, and now we’re friends. Working with THT has given me the confidence to share my story every day, in the gym. I have the passion and through Positive Voices I can back it up with the facts. “I was on holiday with some white, middleclass people and someone I didn’t know asked: ‘What do you do?’ . I told them what I did but also that I was a Positive Voices speaker. And because my knowledge is now where it is that the biggest growth area in HIV infection is in heterosexual people over 50. Historically I would be afraid to even say that I was gay.”

Do you think the current pandemic may hide other issues, such as HIV infection?

“I’ve had the flu twice in my life. Real flu. Once when I was 16 and again 21 years ago. The following winter I began to feel that I had the flu again, although it wasn’t as bad as previously, it felt different. And although over the Christmas period I knew what kind of sex I had had, when I went for my next sexual health screening and was offered a HIV test I declined. The nurse recommended I had one anyway so I did and it came back positive. I hadn’t had flu again, it was my seroconversion. With that in mind I think about the present. “Someone I know started a relationship just before the pandemic and a couple of months in they were not feeling very well. They had a Covid-19 test which came back negative and I thought to myself, well what about having a HIV test? This is something I want to try to use when I’m in my talks, or perhaps in the questions afterwards. Our focus on the current pandemic can disguise something else which may be going on and if we are going to meet the World Health Organisation target of zero new transmissions of HIV by 2030 we must not lose our HIV focus.

“I’ve been through an epidemic before and in many ways it feels like living through the HIV/Aids epidemic was a dry run for this.” John shares one final positive story: “Fifteen years ago I had a hernia operation and I was asked to go into hospital at 8am, but I was not taken down into the operating theatre until 7pm. Afterwards, when I asked about the delay, they told me the reason was because I was HIV+ and they had to sterilise the operating theatre after I had been in. Even though I was on treatment at the time, you can imagine how dirty I felt. Recently I had a skin cancer removal and I was expecting the same experience. I was first in on the list and I was like WOW. They understand that because I am on effective treatment, I cannot pass HIV on to anyone. That’s about the journey and the importance of education.”

For more info on THT’s Positive Voices, visit www.tht.org.uk/our-work/community- projects/positive-voices