Different strokes for different folks
Last week I partnered with a young guy from my local AIDS Service Organization to give a two-and-a half hour presentation to a class of trainee personal support workers. I’ve been doing this kind of thing, on and off, for twenty years. It seemed timely, though, for an overhaul
We had the luxury of two and a half hours to go beyond AIDS 101 plus "my poz story", to try and tailor a talk that fully reflects 2015 rather than the preceding years. So, ahead of the talk, I and my ASO peeps spent some time thinking about what the 2015 version of public AIDS education and awareness might look like.
Speakers living with HIV take all kinds of tacks. My own aim has always been to present HIV as a very human condition rather than just a clinical one. Sure, AIDS 101 is necessary but I generally leave it to others. Instead I talk about the impact of the disease - on myself, on others, on the world - rather than the symptoms, treatment or prognosis. It’s always gone well, but this time we needed to reflect the fact that HIV has changed – and so our message should change too.
But which direction to go? Now I admire anyone who gets in front of an audience and shares their HIV-positive perspective - there is always good in that - but I sometimes worry whether we strike the right note. There is the danger, for instance, of portraying HIV as something horrible, to be avoided at all costs (the "scared straight" approach) with the poz speaker as Exhibit A.
So I don’t go there.
Neither am I all that keen on talks which adopt a “just the facts” approach – the ins and outs of HIV prevention, too heavy on the “bodily fluids” and warnings about “condomless sex” that can all too easily turn an audience off sex for good.
So I don’t go there.
I have always talked about stigma and how the more marginalized you are the more acutely you are likely to experience it. But now I think we can inject a degree of optimism born of effective treatments, reduced (eliminated?) infectivity and a new place in society for people living with HIV. To do this we have to convey how HIV has changed, how treatment has changed and how prevention has changed – and why people with HIV are, and some will disagree,often pretty damn normal. Good neighbours, good friends, good lovers.
We have to convey that people living with HIV are increasingly living strong and healthy lives, and are no danger to anyone. That in itself is a powerful antidote to stigma. Whether a message that depicts us as happy and healthy is a good prevention message no longer concerns me. If we are to battle stigma truly effectively, we cannot portray HIV in the developed world, or by extension the experience of living with HIV, as something to be scared of.
So I don’t go there.
Sure, fighting stigma involves pointing out who suffers most from it and why – and hopefully how we deal with that. We also need to make it clear that fighting stigma isn’t just about making life easier for us. It’s a necessary component of ending the epidemic. Testing, for example, is much more inviting when it relates to a condition that’s free of stigma, and so is disclosure of your status.
Into the future
Seems to me our talks today have to be franker than ever, more informed, more rooted in science while still maintaining the personal touch.
I’m sensing that the public knows very little about how HIV is lived today, or what strategies are out there for those who wish to avoid it. Last week’s talk with personal support workers was revealing. No one knew about the power of ART to reduce/eliminate transmission risk. No one had heard of PrEP. Clearly they had a vision of HIV rooted in past decades. It is, to be clear, a sympathetic vision, a caring vision – but a vision which no longer reflects the truth
So we got into it. We talked new prevention technologies, we talked successful treatment regimes, and we talked about PrEP, about 90-90-90, about disclosure and the law, about the treatment cascade, even what PARTNER tells us. And we had thoughtful, concerned questions from the audience like “does a person living with HIV still have to reveal their status if they have sex and are undetectable?”
Then I told my story. My take home message has always been unconventional. It is based on the theory that adversity often brings out the best in people. Thus HIV, or any chronic condition for that matter, sometimes has the power not to ruin lives but to elevate them. It’s a message about empowerment that I’ve always hoped counteracts the stigmatized image of HIV. Add in the news about new advances in treatment, prevention and viral load impacts and, I hoped, we would have a winner.
I think we did.
Strikes me though we as a community haven’t done a good enough job in bringing the public up to date. No campaign I know of has tackled that. Hell, there are precious few resources to bring people living with HIV up to date. Stigma will go away not by shouting simplistic slogans but by truthfully portraying the experience of living with HIV in 2015. Let’s be fearless in going there,
It’s vital, after all, that we present in all our messaging, live in front of an audience or online, not just “the face of HIV” but “the NEW face of HIV”.