World AIDS Day: a personal perspective
What it’s about.
It’s strange that many people think of HIV and AIDS as ‘over’: something that happened in the 80s and not part of today’s life. However, over 39 million people are still living with HIV globally, a quarter of them with no access to health care: so, dying, basically, at a rate of just over half a million a year. In the UK, one in 600 people has HIV, and a large number have been living with it long term.
That is why World Aids Day is vital: to remind everyone that this contagious disease is still with us, that this pandemic is still happening and people are living with illness, prejudice and stigma. Everyone needs reminding of how to prevent infection as numbers infected continue to rise. And of course World AIDS day does a great job of fundraising for medical and social care for people affected.
My Personal Experience
I am a 64-year-old gay man: old enough to remember when AIDS was still called GRID: the gay-related immune deficiency syndrome. That name was what gave rise to the idea that AIDS was a ‘gay plague’ and led to many hateful people saying that it was God’s judgement, which must have come as a surprise to many people who go it through blood transfusions or spousal infidelity.
I can remember the fear in those days, the homophobia and queer bashing it encouraged, and how outspoken some politicians and other officials were about how it only affected gay people so no-one had to worry as we could be left to die.
Not co-incidentally, the infamous Clause 28 was passed during this period, making it impossible to give young queer people the safer sex information they needed to stay alive. It was up to voluntary groups to support and fill in when our government (and our health service) was doing the opposite of being supportive. Everyone loved the NHS during the COVID crisis, but during the AIDS crisis patients were often treated appallingly by NHS staff and giving misleading information.
So, we queer people organised ourselves, like we always do. I am very proud to have been a ‘Switchboarder’ for what was then Lesbian and Gay Switchboard in the late 80s. This was pre-internet: all our information was on a huge shelf of ring binders, including the famous National Aids Manual (NAM) which was kind of our bible as so many calls were from people terrified of contracting HIV, or scared of going to a hospital to find out if they had it. NAM was put together initially by switchboard volunteers but grew into a charity of its own, providing vital information during a terrible time.
Of course, a charity cannot replace proper social care, no matter how many brilliant volunteers it has, and I had the privilege of working alongside some truly remarkable people, many of whom are sadly no longer with us. It is a strange thing to not even be 40 and for most of your friends to be dead: I was in my mid-60s before that would start happening again!
Practical Support (laundry, mostly)
As I mentioned, many people did not want to access health or social care because of the well-known and unchallenged stigma about AIDS. However, the new HIV medicines were not yet available, and the existing antivirals were brutal in their effects; they often only delayed the inevitable. A lot of people were dying, and dying people need a lot of help, so the ‘Buddy’ system was set up, where volunteers would care for people during this terrible time. I was an unofficial Buddy for three years, caring for four men as they got more and more sick. Obviously, there was a lot of emotional support, but the main thing I remember is laundry: I seemed to spend my life emptying and filling washing machines and tumble driers. But of course, I was happy to help in any way that I could, including getting rid of porn and toys after a guy died and family arrived – it was like clearing a crime scene!
HIV volunteering now
I also got involved with a brilliant HIV charity in Liverpool called Sahir House: one of the most amazing groups of people I’ve ever worked for, and I’m proud to have been a volunteer with them for over 20 years. These days I mostly do mentoring and facilitating online sessions for them: these were a lifesaver during COVID, during which a lot of immunocompromised people were shielding. Social isolation and stigma remain a major issue for people living with HIV, even in this new era of PrEP (pre-exposure prophylaxis: taken to minimise risk of contracting HIV) and very effective and low-impact antivirals which can reduce people’s viral load to an undetectable level at which point they are no longer infectious. This is the origin of the U=U slogan: undetectable means untransmissible.
How it involves Diversity Role Models
So how does all this affect Diversity Role Models? Well, most of our work is with young people HIV is on the rise among this group, because they are still not given good information about sexual health, especially as parents are often able to ‘opt them out’ of sex education. Whilst we don’t do HIV training in our sessions, Diversity Role Models raise awareness of all issues affecting LGBTQ+ people, and students sometimes have questions about HIV. We signpost them to Switchboard (still going, even more inclusively, as there were trans and nonbinary volunteers while I was last there) and ‘The Mix’, where they can get free and confidential information tailored to their age and need.
We also do them the service of showing that there are elders in our community: that we didn’t all die in the 90s, much as many people would have wished it. We organised and fought back, like we always do. I was only a small part of the incredible things that were happening: ACT-UP, the founding of the Terence Higgins Trust and so on, but I am proud of queer people for coming together and supporting each other. Sometimes your chosen family is your best family!
If you are interested in volunteering with Diversity Role Models, and having the opportunity to tell your story in a classroom so that the next generation can be more knowledgeable and inclusive of LGBTQ+ people, you can find out more here.