This year World AIDS day was really special as I was invited by the Eddystone Trust to Taunton to come and speak at their event. Taunton is in the beautiful south-western region of Somerset. The organisers had invited over 80 people living with HIV from the whole region: from Devon, Dorset and even Cornwall. Obviously living with HIV in smaller towns and rural areas is very different from what we experience in a big and anonymous city like London. People often live very far from each other and can be very isolated. It was clear that the event was extremely important to them as many travelled over two hours to reach the venue. I was part of a fantastic lime up of speakers which included my dear friend Robert Fieldhouse from Baseline magazine – doing a treatment update, Paul Decle from Forum link talking about engagement, and Ant Babajee, speaking about his journey from diagnosis to activism
Rather excitingly the event was held at the horse racing grounds. Unfortunately there weren’t any races on the day, to distract me from my nerves, as I had the honour to open the conference as keynote speaker and set the tone of the day. Nothing less! I felt my heart speeding as if I was running down the tracks.
I opened my talk by saying: do you know what is the question I hate most? ‘ How did you get HIV?’ I know that the question is often an excuse to judge me, and to find out exactly what I did to bring this horrible disease on to myself. I used to wish I had a very tragic story to tell: like I was a young pure and innocent virgin and a horrible man lied to me. However, guess what? I wasn’t! I got to know about my diagnosis a few days before my 30th birthday. I wasn’t ‘innocent’, and I wasn’t ignorant. I knew the facts around HIV, and how it was transmitted, but this was not enough to protect me. The reality is always more complex, and to tell you the truth it is painful to look back. I know that several things made me vulnerable to HIV as a young woman: firstly I struggled with mental health and depression throughout my teens and 20’s and as a consequence of my depression I had very low self-esteem, secondly I grew up in the very sexist Italian culture of the 80’s. For young women it felt like a lose –lose situation. You were meant to be liberated and emancipated, but at the same time enforcing condoms was seen at best as fun spoiling, and at the worst as just being slutty. Being a pretty young girl and having a very low self-esteem was a real recipe for disaster, and it is not a surprise I had the problems I had with drugs, unhealthy and abusive relationships, and that finally I contracted HIV. What worries me in 2014 is that the situation is not much better for young women, who get sexualised and objectified from even a younger age.
In spite of this context all our focus in HIV prevention seems to be moving away from any consideration of the structural causes of vulnerability to HIV. We are now hailing bio medical interventions such as PreP and Treatment as Prevention as our saviours, and there is a false hope that we can medicalise ourselves out of the epidemic without dealing with many of the issues that drive HIV transmission. A record number of young gay men have been diagnosed HIV positive this year. We know that mental health problems, and drug and alcohol use are extremely common in this group. We know that in spite of the progress of the LGBTQ movement , we still live in a very homophobic society and growing up as gay often exposes young people to bullying and other difficulties and abuses. A lot more could be said about this and about the falling of the sex and relationship education curriculum that doesn’t address issues of sexuality and gender appropriately. We should not ignore how all of this increases young gay men vulnerability to HIV. Of course I am totally in favor of PreP being available as soon as possible to those who are at high risk of HIV, but I also want it to be part of a comprehensive prevention package which includes better access to support around mental health and drug use for young LGBTQ. It is not either or, we should have PreP alongside holistic services that address other structural issues which influence choice and behavior.
The key messages on this World AIDS day is: we are not going to medicalise ourselves out of the HIV epidemic; unless we address stigma, HIV will continue to grow in our communities. HIV stigma continues being a barrier to people accessing services, including prevention, testing treatment and care. So my questions to my audience of people living with HIV was: what can we do, as people living with HIV, to end stigma? I believe that one of the most powerful tools we have is to talk about HIV. I know this can be difficult for many of us, but I think that even if we manage to tell a few friends, or our family circle, every time we are able to talk honestly about HIV, there is a little less stigma in the world. We cannot expect HIV stigma to just disappear, or for somebody else to do it for us. In the history of social change, change happens when those who are directly affected, oppressed and marginalised stand up and demand to be treated with dignity and respect. This is true throughout history, from the suffragette, to the civil rights moment, to the LGBT movement and anti colonial movements etc. it is about ordinary people taking collective action. I know for some people this may be very hard, and even dangerous,. I am not saying it is absolutely for everybody. Some of the men at the Eddystone event talked of how hard it was just to come out as gay in a rural community, and how difficult it is to on top of this to also add the burden of this stigmatised virus. I can understand that. But there were also people in the room who had started being public, or talking to more people about HIV, and they had some positive responses. it was important for them to see that as a collective of people with HIV we want to move towards more openness. There were many still hesitant, and I hope the event gave them some inspiration and motivation to being just a little bit more open about their status.
To conclude my talk I showed Positively UK’s film: We Are Positive, part of our social media campaign to end HIV Stigma. In the film, people living with HIV, and some of our friends and supporters speak up to dispel myths around HIV by making simple statements about what HIV is and what HIV is not. The hashtag for the campaign is #wearepositive. Please if you use social media like twitter or Facebook help us promote the message.