I’m off to Oshawa tomorrow for a conference for people living with HIV. I’m talking to them about what we attendees gleaned from the International AIDS Conference in Mexico City earlier this year. In particular, lots of stuff on viral load and what being undetectable means to poz guys. And lots of stuff too on whether treating us early on, in order to reduce our viral load - perhaps on diagnosis even - is an acceptable prevention strategy. (I have real concerns about that, how about you?)

But Mexico City also addressed HIV stigma head on. Clearly it’s a universal problem. Here’s a photo I took of a huge march there addressing it:

The march was thousands strong. Would we ever get that number here? Certainly in Mexico, the commitment to tackling HIV stigma was strong. They seem to get it. Even the Mexican president spoke up against stigma.  Haven’t heard a word from Stephen Harper on the topic yet - sounds like a “when hell freezes over” kind of thing to me.

Anyway, Brian from this site also took part in the march. Somewhere on the internet there’s a picture of him bare-chested doing so. Perhaps if we ask him nicely he’ll share that here?

Anyway, following the Oshawa gig I have almost two days of meetings in Toronto about poz prevention. Later, since I’m in the big city, I’ll be hitting Church Street with my partner for Halloween. Not in costume, as it happens, but feel free to say hi. Or boo. Or whatever people say on Halloween these days. (Can you tell we don’t get out much?)

So I’ll be offline until the weekend. In the meantime, here’s another little example of how folks around the world tackle stigma, proving I think that we can address difficult topics in fun - and funny - ways. Because dancing condoms are funny, at least in my book. And that’s just the start:

http://uk.youtube.com/watch?v=44IFYB1icx0

I’m not sure whether “Never forget me, I am Nirodh, I am the condom friend ever useful to you” would cut it as a slogan here in Ontario. But it’s clear our Indian colleagues are working very hard to overcome the stigma associated with condoms in that county. Any folks from the local Asian community want to chip in and comment on that?

And if (what’s wrong with you?) you don’t like the Indian condom ad, here’s one I’m guessing will appeal to every gay guy in town. True, it has nothing at all to do with HIV, but it DOES have A LOT to do with the assumptions we make. May not be safe for work!  Enjoy.

http://uk.youtube.com/watch?v=VmxCnvP_40E

 .   . . or, more specifically, what has same-sex marriage got to do with HIV prevention, yet alone stigma?   Read on.

Some advocates for gay marriage - the debate still rages in the US - think that same-sex matrimony will lead to a reduction in HIV transmission. The US-based AIDS mag, POZ, said recently that some gay marriage advocates argue that “marriage would ordain and encourage pure, old fashioned fidelity, giving gays a legally sanctioned reason to swear off the temptation of extracurricular, unprotected sex.” In other words, keep hubby locked up at home - and happy - and that will stop the stop the “problem” of gay promiscuity, and thus lower HIV infection rates.

Read the full article here: http://www.poz.com/articles/gay_marriage_hiv_prevention_2226_15107.shtml

Frankly, this makes me uncomfortable. My concern isn’t about the need to enact same sex marriage legislation, of course, so let’s not go there. (For the record, I’ve been in a twenty-seven year open relationship; we ourselves don’t need, and don’t want, to get married, and we already have a toaster. But others MUST have the right to get married, period.) But bringing HIV in to the mix smells like stigma to me - and, for a change, it’s single negative guys who are being stigmatized as well as us poz guys.

The logic of the advocate’s argument is all wrong too. So-called monogamy, and with it, the abandonment of condoms, leads, I think, to too many scenarios which actually contribute to transmission rather than curb it.

But it’s the unflattering characterization of negative gay men in particular that makes me squirm. It makes it sound like they’re sex-mad risk takers, for whom old-fashioned marriage is a cure.  OK, the sex-mad part might be right.  ;-)   But really, this is stigma, and from within our own community too.

Or is it?   Am I being too sensitive here? Talk to me.

And while we’re at it, is there other HIV-related stigma out there that’s directed at neg guys rather than poz guys?

That’s a provocative slogan if ever there was one. I hope it gets guys talking

You’ve likely guessed this campaign is aimed mostly at negative gay guys. Sometimes I worry though. Will they interpret our campaign slogan If you were rejected every time you disclosed, would you? as poz gays just making excuses for “bad behaviour”? Could it be seen as saying that it’s all right not to disclose one’s status before a quick fuck. I hope not - because neither is the intent. But I must admit that when I first saw this slogan months ago, it set me back a little. On the good side, it resonated with me as a poz guy. It says to negs: “try putting yourself in our shoes - not sympathizing with us (we don’t need that, thanks) but understanding the complexities of our lives - and the forces that shape them”. And I like how the ad doesn’t exactly spell out that stigma is the problem but implies it, with the HIVstigma.com web site reference. It struck me as intriguing and enigmatic enough for guys to want to learn more, perhaps.

To me that slogan is pretty out there, though. Pretty daring. And pretty sophisticated. We’re dealing with complex human behaviours here - we’ve left “Welcome to Condom Country” ads far behind - and now we’re asking guys to think.

Some folks say that neg guys have their heads in the sand when it comes to HIV. I don’t buy that, not as a blanket statement. I know that many neg guys are scared as hell of the disease and go to great lengths not to become infected. But for others, yep, don’t want to hear, don’t want to know.

I know that’s true - because way back when I was negative I didn’t want to hear, didn’t want to know about HIV too. That’s likely why I sero-converted. And even after I was diagnosed, I didn’t want to hear about it - or deal with it. That lasted about six months and then I smartened up.

But anyway, the question is, will we get the attention of negative gay guys?  All I can say is we’re making it fucking hard to ignore us.

I was in Toronto yesterday for a meeting with my fellow campaign facilitators - to compare notes and all. I’d heard that a big campaign billboard was up there by the beer store near Church and Wellesley. So I went there to look. It’s ENORMOUS. I took photos. 

And then there’s another one over the drug store at the Church and Wellesley corner, the centre of our universe, that you can’ t miss!

 On Wellesley subway station, there’s a platform ad, of course. But go up the stairs to street level and there is a HUGE banner advertising our campaign covering the entire width of the entrance, front and back. Never seen anything quite like this.

 Downtown Toronto gay guys are really going to have to keep their heads down to miss this one. And I hear similar stuff, albeit on a smaller scale, is headed for other communities in the province.

But I’ll pose the question again: does that slogan work? How will gay guys interpret it, do you think - both poz and neg (I’m guessing there will be a difference in the way they see it). And, here’s another question: what will those funny straight people think?

I wanna know. Talk to me.

And on an entirely unrelated note, the guys on So You Think You Can Dance Canada are very, very cute.  Particularly with their shirts off.

I think one of the problems with safer sex is that it’s become waaaaay to closely connected with condom use. Sometimes the two seem almost inseparable. What’s up with that?

My negative partner was checking out this very web site the other day with his usual eagle eye and stopped at the first question posed by one of the strippers in the Explicit Truth section. (You do know we have strippers, don’t you?) “This answer doesn’t make sense” he said. (He never really did have an eye for strippers. I don’t know what’s wrong with him!)

Here’s the question and response that he’d zeroed in on:

 Q: Gay guys are abandoning condoms, True or False.

A: False; Whether we have HIV or not, most of us play safe most of the time. In a 2005 study, 70% of guys reported sex lives with little or no risk of HIV transmission.

That answer is a bit of a non sequitur, so I’m guessing it won’t be just my partner scratching his head on that one. I’m sort of OK with that, though; thinking is always good in my book. But I’m not so OK with the implication that safer sex equals condoms, as if the two terms are interchangeable. That’s clearly not the intent here, I know. In fact this site has a good little section that explains what safer sex can be. You can see that here: http://www.hivstigma.com/safer_sex.php   It’s a far more inclusive list than just condom use, and rightly so.

It’s my take that condoms are a bit of a dog as a prevention methodology. Attempts to eroticize their use as a prevention strategy work for some, but clearly not for others. Some guys will tell you that sex feels better without them, that they kill the mood, that they turn Mr Big and Tall in to Misterr Softeee. BUT, despite all this, a tribute to our collective good sense I think, they are still a staple of every gays guy’s night-stand . More often than not they’re used when they need to be used.  Or - and I think this is important - many guys find other ways to reduce risk. Collective pats on the backs, folks!

But I do wish we had something better for what some see as our prime defence against HIV. In the mean time, I think it’s productive to question whether condoms are the be all and end all of safer sex.

And while we’re on the subject of finding new prevention technologies, I’ve read a lot about circumcision lately. Don’t get me started about that . . .

By coincidence, I put up a photograph in my office yesterday. (We’re in a new home and still in the decorating phase.) It’s a photo I took at the International AIDS Conference in Toronto of the work of a Brazilian artist who works entirely with condoms. She makes fab dresses out of them, in fact. I like the way how she sees condoms in an entirely different light to the rest of us  . .  .  .  .

I got a spate of comments on my last entry as a result of people who read my other journal coming over here to take a gander at this site.  Good for them. My other journal is here, if you’re interested: http://ruralrob.livejournal.com/ It’s an almost daily chronicle of living in the country, sometimes touching on HIV stuff, but mostly not.   It’s my life.  And tons of photos I’ve taken in and around my little community of 700 people, located in the wilds of Eastern Ontario.

How rural am I? This is the view from my front porch .  .  .

I mention all this partly because it shows, I hope, that we are multidimensional, rather than just people living with HIV. I’m also (I think) the only rural guy on our panel of facilitators, and so I’m very conscious of whether this campaign will make sense to everyone, wherever they live My take is that the look of the site is urban and edgy, which is smart, given that Toronto is the centre of the gay universe, and where much of our target audience is surely located. But not all will live in big towns. So that reference to deciding what to wear to a Madonna concert won’t resonate as much here in the boondocks, where we are more concerned with what brand of rubber boots are best for winter - and fashion be damned

It’s my experience, though, that those of us gays who live away from large urban centres have many similarities with big city guys - and we sometimes share your recreational spaces - but we often lead quite different lives.   Some of us, I know, have isolation issues Toronto folks could only guess at, which fact impacts heavily on our ability or willingness to disclose our status to strangers, for example. Even outing oneself by going to a local AIDS Service Organization for help is a huge step for many. I know, I’ve volunteered at one such organization for years. So I understand these things, even though my own status is one of someone who is out about both my sexual orientation and my HIV status.

I’d love to hear from other folks who live away from large urban centres.   What’s your take on HIV and stigma?  Is it better where you live, or worse?  Harder to disclose, or not?   And do you feel this website speaks to you, or are you feeling left out? I’ll reply to all comments.

.

I see over on co-facilitator Murray’s blog here on this site, the venom is flying.  We expected to get hurtful commments  - the subject matter covered  in this site is controversial and invites heated discussion - and the first “hate” post showed up last night.  (It’s interesting, by the way,  that folks who leave  comments like this can seldom spell.)

My first reaction was to hope that the comment gets taken down right away.  It’s terribly disrespectful to Murray, who has bared his soul here in the interests of helping  others -  and thick skinned though I am, I think I would be mortified in a similar situation.

But then, as someone else has pointed out, the derogatory comments directed at Murray are a shining example of why this site is needed.  It’s stigma in action!  Attack folks because they are poz!  Call them names.  Condemn their point of view, without even listening to it!!  Don’t try to understand !  Show no compassion, no empathy, no brain!   I think we almost struck gold!

It’s up to the site administrators of course  - and Murray - whether the comments are allowed to stay.  I know what I’d do though . .

 I had my quarterly check-up last week.  The usual dizzying round of numbers, questions and never being entirely sure whether I have anything to worry about.  At 549, my CD4 is almost as high as its ever been, and my viral load remains undetectable.  But then my doctor  says there’s something about my kidney function which requires follow up with my regular doctor.  Call me stupid, but I don’t fully understand what the issue is, although its something to do with a potential side affect of Truvada and how it impacts on renal function.  So more careful monitoring is required apparently, although why its going to be done by my family doctor rather than my HIV specialist I’m really not sure.

I never did claim to be a good patient. You know the kind.  Instead I put all my faith in the decisions made by my HIV specialist,  often made with less than perfect patient/doctor consultation, with me trusting he knows what he’s talking about it.  Luckily, he usually does.

Truth is HIV comes with a price.  We are expected to be good patients.  We are expected to be in charge of our own health care.  We are expected to understand the intricacies of modern medicine.  We are expected to live healthy lives, to eat well, to look after ourselves, to navigate social security, housing and other disability issues as if we’ve done it all our lives.  We are expected never to miss a pill.  We are expected to routinely discuss our status to sex partners.   We are expected to know the quite complex laws around disclosure.  We are expected to educate others.  The list seems endless.  And it’s hard, really hard, to live up to all these expectations while coping with the day-to-day realities of a serious condition like HIV.

That some poz guys do all these things is amazing. Personally I fall short of that ideal.  But perhaps that’s what this campaign is trying to get across.  Namely  that if negative guys understand the challenges of living with HIV, they would better understand why we don’t always do it well, because it’s hard. 

Does understanding each others’ realities lead to reduced stigma?  I think so.  I hope so.

I wanted to add a little about the HIV Stops With Me campaign

There is lot to like about that US-based campaign (you can check it out here: http://www.hivstopswithme.org/about.aspx?t=EN&l=home) . It’s an interesting one too because it’s purpose, like ours, is to address stigma and also “to acknowledge the powerful role that people who are positive have in ending the epidemic.” So it features HIV positive men talking about their lives and their commitment to HIV prevention. Sound familiar? Gotta love that!

But I’m not sure that slogan sends quite the right message about that tricky subject, responsibility, a word, by the way which I’ll use, even though I’m wary that it’s loaded. Few would deny that we positive folks have an important role in stopping the spread of HIV. But so do negative guys. If there is responsibility, its shared, right? The implication that it’s the burden of the HIV positive guy alone to stop HIV - HIV Stops with Me - seems to discount the role of anyone else. And that doesn’t sit all that well with me.

It’s my experience that HIV positive and HIV negative guys often have a different slant on issues like this.

In any event, am I being too sensitive to the nuances of the English language? It’s easy to overanalyse . That slogan is undeniable punchy, makes you think and is potentially inspirational. It’s just that I wish they had been a little more inclusive - of everyone.

Thoughts anyone?

I’m no stranger to blogging. Over on LiveJournal, I‘ve been posting almost daily entries for over five years now. There, it’s an ongoing account of life in rural Ontario that sometimes touches on HIV and gay issues, sometimes not. And there’s the thing. I’ve always maintained that my life is not defined by my illness, that we are whole individuals, all of us, and that HIV is just a small part of our lives. Mine has been spent mostly in large cities, London England and Toronto in particular, but I chose to move to the country thirteen years ago. I have a partner, two dogs, a new house, lots of friends and more than a passing interest in photography to prove that life is in fact more than HIV.

But distancing myself from HIV is a bit of a conceit. Life for me in reality is a balancing act because, like it or not, it’s full of HIV-related stuff.. And I don’t mean pills, although I take enough of those. No, I spend huge chunks of my life talking about HIV, writing about HIV, attending meetings about HIV. And in my tiny rural community of 700 people, where everyone knows everybody else, and I’m out, I’m surely known as that photographer guy who has AIDS. (I’m merely positive, but I doubt whether country folks make – or even know – the distinction.)

But I’m fascinated by HIV, always have been since I was diagnosed. Never one to be well up on treatment issues – I leave that to my doctor – I’ve somehow become more and more involved in the intricacies of prevention, through the lens of an outsider, rather than as a professional. I’m well versed in poz prevention in particular. So this project was a natural. I want and need to react with others who have strong views, who are curious about what makes people tick in a very complex world.

And it is a complex world. I used to think that the HIV STOPS WITH ME campaign (www.hivstopswithme.org) was the pinnacle of poz folks’ involvement. Now I’m not so sure. I support the organization’s aims but question the message. I’d be curious to hear what other folks think our message, as people living with HIV, should be.