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The Latest Stories By Bob Leahy

  • Say what?
  • There is a drug to prevent HIV. Why isn’t it approved in Canada?
  • Buddies has a winner with Tom at the Farm
  • Towards a Canadian consensus statement on the health and prevention Implications of HIV treatment
  • An AIDS hero returns to the fold

Bob Leahy

Bob Leahy

Award-winning blogger Bob Leahy first made his social media mark a decade ago on LiveJournal.com where there are still to this day almost 3,000 entries of his available to be read. He was a featured blogger on Ontario’s HIVStigma.com campaign, along with PositiveLite.com founder Brian Finch.  He joined PositiveLite.com at its inception in 2009 and became it's Editor a year later.

Born in the UK, Bob’s background is in corporate banking, which he gladly left in 1994, after being diagnosed with HIV the previous year.  He has chaired the board of PARN (Peterborough AIDS Resource Network) and has been an executive board member of both the Ontario HIV Treatment Network  (OHTN) and the Canadian AIDS Society (CAS).  He was inducted in to the Ontario AIDS Network’s Honour Roll in 2005.  Bob is currently a member of Ontario’s GMSH (Gay Men’s Sexual Health Alliance). He also writes for TheBody.com.

In 2012, Bob was honoured with the Queen Elizabeth II Diamond Jubilee medal for his work and commitment to HIV/AIDS in Canada.

Bob continues to write for this site while in the Positivelite.Com editor’s seat, with a particular interest  in HIV prevention, theatre and the arts in general. He is accredited media for a number of Toronto theatres. He lives in Warkworth, Ontario with his partner of thirty-two years and three dogs.

Apr27

Say what?

Monday, 27 April 2015 Written by // Bob Leahy - Editor Categories // Activism, Living with HIV, Opinion Pieces, Bob Leahy

It's time to update our messages. Bob Leahy sometimes does public speaking. Today he asks what exactly is the message about HIV that his audience - and the public - needs to hear in 2015?

Say what?

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.

Multiple avenues

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”.

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