Thanks for taking the time to speak with our readers, most of whom are HIV-aware and involved in some kind of advocacy.
First, could you provide a short bio? What’s your advocacy background and anything else you’d like our readers to know about you?
I arrived at this point in my life, not through measured choice, I suppose I’m trying to make lemonade out of lemons. My life took a series of very unexpected turns. At the time, certainly not for the better, when the pain of that subsided and it started to hurt less and I began to find my feet… I decided to take ownership of things. Which has taken the shape of me fighting back, mainly against HIV and AIDS and the stigmas surrounding both. On my Facebook and Twitter I’ve had some lovely messages of “support and admiration” for my “bravery”. But I really can’t take credit for being “brave”. I’m just fighting back as much for me and my soul as for our positive friends and indeed our negative ones too.
What are the effects of HIV stigma, as you understand them?
HIV stigma and its impact, in my opinion is the root cause of the continued rising spike in new HIV transmissions among those HIV ‘hot spot groups’ that we are already aware of, i.e. gay men living in fast paced urban areas. But we’re now seeing a rising spike in various other demographics, like heterosexual women in the 50+ age bracket. The reason I attribute stigma as being at the core of this is because we’re all conditioned to believe that none of us should even be talking about sex, even though all of us are having sex. Somehow, even admitting that you’ve had a HIV test implies that you’re somehow unclean, dirty, irresponsible and reckless or a biological danger to those you are and have been intimate with.
Thirty-plus years on into the pandemic, HIV stigma persists. Why did you decide to focus on normalizing the conversation around sex and HIV for this social media campaign?
Unless we shock people into being desensitised to HIV we can’t hope to be able to encourage them to test regularly and make testing commonplace, without fear of judgment from others. The key here is that the people most likely to transmit HIV are those that don’t yet know that they’ve contracted it. Therefore, if we’re not testing regularly, diagnosing early and treating effectively – those most likely to pass on the virus, then we have no chance of tipping the scale on this alarming, seemingly relentless rise in new transmissions. Not many people know that we have the tools available now to actually make a huge impact in stopping new HIV transmissions. If you’re positive and on meds, taking them correctly and are undetectable, then it’s practically impossible for you to pass on the virus. In the same thread, those at high risk of HIV infection have access to/or soon will have access to PREP. This reduces the chance of contracting the virus (depending on which study you take your figures from), down to 5% – 15%. So the combination of treatment (for poz guys) and PREP (for neg guys) is a no brainer!
How did you arrive at “Equals = Equals”?
I just think it works on a lot of levels. Mathematically it kind of works too. If we have something that’s positive, combined with something that’s negative, we neutralize that and they then become equal. And there in itself is a mission statement.
Was there a specific moment that sparked the idea for the campaign or a straw that broke the camel’s back where you said, “Okay, I need to do something”?
Yes, there were several straws and one tired ass camel!!! I suppose it was because I realised that there was sweet FA (Fuck All) that I could do about my life as I knew it, being turned upside down and basically taken away from me. Losing my fiancé and my home because he shut down and couldn’t cope with his recent diagnosis and me remaining negative.
When I accepted that I couldn’t change that. I slowly then began to realise what I could change is the world that he now has to live in as ‘the positive guy’. Being at sex parties or just out socially and bearing witness to some of the vile, heartless, cruel, passive attacks and active bullying that the positive guys around me were dealing with regularly, on a daily basis broke my heart a little bit more. And because my ex and I aren’t in touch anymore, it pained me so deeply to think that he was out there somewhere – alone, on the receiving end of that kind of unacceptable, archaic bullshit. Apologies for my colourful language, I’m Irish, we say it as it is.
What does Phase 2 and 3 involve, or do you want to defer talking about those until later?
I’m happy to chat about them now. I’d just like to take this opportunity to point out that Phase 2 and Phase 3 are hinging on Phase 1 being actioned and completed.
Hopefully the visibility that Phase 1 will create will provide a presence that should be easily approachable and more so easily contactable. Building on this, the ‘Equals=Equals’ Phase 2 will be a ‘drop in and a chat to a mate’ online support offering. Similar to that of an instant messaging service. The time when most people need to reach out and connect with someone that’s not in their inner circle/family/friends/partner or medical professional for advice and support, or just a chat about something non HIV related is in those first few weeks and months after a positive diagnosis, or whilst on PEP awaiting the results of that treatment. Ironically and cruelly, this is also the time when most people do not know who to turn to, or in actual fact have anyone to turn to for that support. They haven’t processed anything comprehensively enough, for them to be fear free enough of those stigmas and labels that will inevitably and irrevocably be thrown at them. This really is a short window period to help these guys and to maybe save a few lives and offer the support that to the best of my knowledge isn’t available, certainly not in this format. I have a Facebook inbox filled with 100’s if not 1000’s of messages back and forth from newly diagnosed guys needing someone to just talk it through with, poz guys that want to touch base about something, neg guys seeking information or advice and mixed status couples too. I can sometimes be online messaging and responding for 4-5hours and anytime of the day and night – luckily I sometimes suffer from insomnia so it’s a welcome distraction! But interacting with these wide range of guys on this level flagged up to me that there is most certainly a need for this kind of support to be made available in an extended, more structured fashion. I am after all only 1 guy on 1 Macbook!
Stage 3 is to build on what we have already achieved and step it up a notch by moving from offering online support to providing a space for people to come and find a sense of community somewhere ‘normal’ for want of a better word. When I say ‘normal’ I mean a place that they can find and invest in a community that is not directly or stereotypically associated with ‘the scene’. Where they can establish and invest in relationships and community – free from any stigma and any judgment. A place to just ‘be’. I think there will be a significant gearshift for Equals=Equals at this point as our focus widens and changes slightly. This kind of project I feel is of particular value to some of the younger community especially from ethnic or religious backgrounds where being gay is not accepted and the concept of them being gay and possibly HIV + would lead to serious repercussions. These are often the life blows that are the triggers for the journey to substance abuse, reckless behaviour, irreparable self-loathing and self-worth issues, and in more extreme cases homelessness and prostitution.
Is this U.K.-only (in terms of mailing out the T-shirts, etc.)?
Nope – the great thing about the T-shirt activity is that we have – or will have a fixed price per unit cost to produce each T-shirt. The only financial impact that we would then have to incorporate when going ‘international’ would be the increase in the cost of postage and packaging. So it is an activity than can be rolled out anywhere. And nothing would please me more than to see all sorts of people supporting this by wearing their Equal=Equals T-shirts, taking their photos and posting them online! In effect putting those 3 letters H. I. V. EVERYWHERE – from The Statue of Liberty to Sydney Opera House to The Great Wall of China and Big Ben!
The last thing I want to say is that although HIV and the impact of HIV bulldozing its way into my life almost ruined me and pushed me to a suicide attempt – thankfully a failed one. I now feel like I/we are already winning! HIV screwed up my life but I fought back with the help and support of friends, family and community. And I look at the all people this activity is already reaching out to and supporting and helping and I can see nothing but positive things! Excuse the pun! Taking ownership of HIV’s presence in my life has allowed us to start to claw back an advantage – even on some small level. For that I am very grateful.
Thanks guys for speaking with me and thanks for supporting Equals=Equals.