XTRA’s cover story yesterday was about criminalization, a treatment sympathetic to our cause by Sky Gilbert, which (mostly) hits all the right notes, even though he couldn’t resist criticizing at some length some of our community’s most vocal supporters. You can read the article here: http://www.xtra.ca/public/Toronto/HIV_stigma_radiates_from_behind_the_bench-6193.aspx

Predictably the article has already provoked a flurry of comments on the XTRA website, including the usual fodder for campaigns like ours. “Take the disease spreaders and hang them up” is one quote. Nice!

By chance, I had planned to revisit criminalization here today anyway, given its relationship to stigma, and the fact that it doesn’t seem to want to go away. I’d already noticed that some in our community continue to debate what is a suitable response to people being pilloried for having sex without disclosure.

Is a fairly simple issue becoming overly complicated through neo-conservatism and the power of hot air? To people living with HIV, I don’t see much appetite or even need for debate. Most of us recognize criminalization for what it is - an attack, an affront and a useless, counterproductive prevention tactic, always. From too many others - and I’m not talking about the Margaret Wente’s of this world but some of our “supporters” - the view is often heard that, well, maybe we poz folks need to feel the strong arm of the law, some of the time. Because, we’re told, some of us are “irresponsible”. Some of us are “deliberately infecting others”

Even XTRA raises this spectre in a side-bar,  by characterizng some of us this way,  although thankfully it’s challenged by at least one reader.

I could document where and when I’ve heard this notion of “deliberate infections” countless times, and from whom, but that would win me few friends. But in every discussion I’ve witnessed where criminalization is debated, it always - always - comes up.  Namely, what do we do with “these people” who intentionally infect others, the psychopaths. No matter that this phenomenon is virtually non existent, no matter that the criminal code quite handily deals with intentional harm anyway and doesn’t need laws on disclosure to do that, no matter that the debate on criminalization is not - or should not be - about “deliberate infections” at all, we go down this path ad naseum. It’s depressing.

Sometimes it becomes a stumbling block. I’m saddened that the community doesn’t seem to have a response to criminalization that’s universally accepted. Even the recent Ontario paper that recommended we re-examine the law and identify alternatives - hardly conroversial - gets bogged down in the debate about what to do about those non-existent psychopaths.

To repeat; the law deals with psycopaths already. It worries me that in discussions that should focus on the legal challenges that face normal, sexually active poz guys daily, we end up talking about psychopaths. I think that is very telling about our attitudes to poz folks generally.

It’s also telling that this debate is not usually within the poz community, or hardly involves us at times. We have few forums that would otherwise enable this, we don’t have the equivalent of NAPWA in the States, for instance. So community boards often devoid of poz folks, composed instead of well meaning folks with little knowledge of HIV, talk about us - but don’t get us.   Agency staff, who are better informed but often similarly devoid of poz folks’ involvement, sometimes fall in to the same trap. So perhaps it’s the lapses in implementation of GIPA (greater involvement of people living with HIV) coming home to roost. It’s hard not to notice that decisions about our future and judgements about our conduct sometimes reflect the mainstream views of the general public, which can be less supportive than we would like - rather than being inclusive of a poz view of the world. That’s why talking about the state-sanctioned stigmatization of people like you and me ends up talking about our role as psychopaths.

So I started talking about criminalization and ending up talking about GIPA. But there is a connection, and there is definitely a connection with both to the perpetuation of HIV stigma, don’t you think?

Anyhow, I find the debate on criminalization disheartening and depressing.  One organization is asking me to come and talk to their board, to present a poz guy’s view of criminalization. It’s good that they welcome the dialogue. But honestly, I’m so pissed off with the whole thing, I hardly want to go.  I feel like I’m done with debating it. Some times the weight of oppression - and stigma - does that to you. And that’s not good.

This campaign isn’t being wound up yet by any means, but nevertheless some of us are in contemplative mood, trying to summarize for ourselves and others what major themes have emerged. In fact I have to talk about some of these at a Gay Mens’ Health Promotion summit coming up next month in Toronto. The intent is to share with prevention workers from across Ontario some of the things we’ve learned. Some of that material will be derived from the discussion that’s happened on this blog, and on those of the other seven facilitators.

Here’s my attempt to summarize one of the major discussion areas:

Pox and neg guys tend to think differently, particularly on disclosure issues. Many report encountering disclosure very infrequently; it just doesn’t happen a lot in many venues, it seems. But neg guys expect poz guys to disclose. Poz guys don’t have a single approach, but a significant number seem to follow the practice of not disclosing when risk of exposure is not significantly present. Neg guys also aren’t so committed to maintaining the confidentiality that poz guys require about their status, and this bugs poz guys. And poz and neg guys alike are all over the map when it comes to whether not being uncomfortable dating a poz guy constitutes stigma or understandable apprehension. There is a general consensus that more dialogue is required on all of this.

I think there are other things that have emerged - the mainstreaming of the view that poz guys are less responsible for new transmissions than untested “neg.” guys, and that if you’re going to sero-sort, you’re perhaps safer with poz guys than so called “neg” guys. There’s been interesting discussion on the joys of condom-less sex too, and how we deal with those. And on whether rejection is a big deal.  But I’d like to hear from others. What do you think has happened here, if anything, that has advanced our knowledge of how we think and relate to each other?

 **************************

 And on an entirely different note . . .

 Obama, the president that’s vowed to take on HIV Stigma (see my previous post), is taking early action on the AIDS front.  Now he’s asked PEPFAR pres Mark Dybul to resign.. That may cause a yawn here in Canada, but for anyone who follows AIDS politics this is big!

Read about it here: http://www.kaisernetwork.org/daily_reports/rep_index.cfm?DR_ID=56599

The significance is not only that Obama is putting his money where his mouth is on AIDS policy but that this likely marks the end to all that abstinence-based crap we’ve seen emanating from our neighbours to the south for way too long.

Can tackling HIV stigma be far behind?

From this month’s POZ magazine: In October 2008, the Centre for Disease Control and Prevention announced that the number of people living with HIV in the United Sates but who haven’t been tested and diagnosed fell from 25% in 2003 to 21% in 2006.

Why is this interesting? Well, it’s often been said in these here blogs, and elsewhere of course, that the primary source of transmission is not from guys who know they are positive, but from guys who don’t. I buy that. But is that pool of poz guys who don’t know they are poz getting smaller?

Not necessarily, I’d say.  Statistics like this have a habit of reinventing themselves periodically, sometimes in quite spectacular ways.  Remember when we had forty million people infected globally, and that number shrunk to 33 million overnight, because the WHO said we all got it wrong?  You’ll need to convince me that statistical errors aren’t happening here before we debate this.

Be that as it may, the related number most quoted in our campaign - the number of poz guys who don’t know it - is 30%. Is that going up or down? I haven’t heard. Do we know, I wonder?

I wonder too how much we know about this pool of “negative” guys who are actually poz. It’s a no-brainer that prevention efforts need to be directed there, but to do that effectively,  we need to know who are these guys.

Here are a few clues, entirely unscientific, based on surmise rather than hard data, (I admit I’m not too familiar with what the Polaris study, which looks at the newly infected, is saying on this.) My take though? Chances are these guys may have a bit of a lax approach to testing. Chances are they may be no strangers to fucking without condoms. Chances are they have more partners than most. Chances are they live in big urban centres. Chances are they are scared.  That’s a start. Ethnicity, age, etc. can be extrapolated from the epedemiololgy of new infections. So perhaps we know more than we think we know.

I’ve heard characterizations of this group, though, which aren’t very flattering, and that worries me. I’m concerned that we not demonize those folks. Because in our rush to judgement - to point out that people living with HIV are not the demons they are sometimes painted to be - pointing the finger elsewhere can easily demonize others. Now that’s just too weird for me.  In this case the “others” are poz guys who don’t know it. We “known” poz guys may be targets of stigma, but it’s unbecoming, unfair and unwarranted to stigmatize others, who in reality are pretty much exactly like us.

So let’s not, eh?.

/rant

Frequent commenter Rodger drew my attention to a fascinating post on barebacking by well known - and uber-cute - blogger Joe.my.god. It’s here: http://joemygod.blogspot.com/search/label/Eric%20Leven

There’s an anti-bare backing video there from filmmaker/activist Eric Leven that’s well worth a peek (it’s NSFW) but the real attraction is in the hundred or so comments to the post, which if you have time, I’d encourage you to read. Everybody, it seems has an opinion on barebacking. It wasn’t my intention to cover that topic in detail, But in the myriad of reasons offered for why guys bareback, despite all the messages telling us not to, the two biggies seem to be:

a) self esteem issues

b) it’s become mainstream - and a calculated risk, just like a lot of other calculated risks we take in life with potentially dire consequences. Like smoking. Like being overweight.

Anyway, Rodger was alarmed, I think, by the anger and the entrenched position in the comments. I agree that’s concerning. That was the theme of my last post too, our inability to get along. But if there’s cause for optimism, I think, it’s in the bright and committed people in our movement, including some who visit Joe.my.god’s blog.

In the debate on barebacking, there’s much talk about the effectiveness of past and present prevention messaging. More than one person makes the point I’ve made in my own blog - that the fear- based prevention messaging that was the stuff of the 80’s and 90’s never really worked. HIV is so horrid, it essentially said, that it’s to be avoided at all costs, so use a condom, always.  That approach unavoidably says something negative about the life of poz folks; it tends to paint us as having  wretched, valueless lives in fact. Given that this stigmatization  - and that’s what it is - leads to new infections (the raison d’être for the hiv.stigma.com campaign) we’ve had prevention messages out there in the past that arguably spread the disease, not contained it.

Thankfully, we’ve moved on to more focussed messaging - or more correctly, a variety of messages - which look at behavioural issues and try to address those behaviours, rather than scare us straight. (Poor choice of words there, I know.) But there are still proponents of the fear- based approach out there. One commenter on Joe.my.god says “I think we need public service announcements with poz folks for whom the meds are no longer working, or who have to wear diapers or some other measure due to the fact the meds give them constant diarrhoea. I think the consequences of not wearing a condom need to be shown for any impact to be imparted.”

But another commenter says the reverse. “We do not need public service announcements with everybody dropping dead or shitting a diaper because of their meds. Not only will that make life worse for the people already living with the disease by perpetuating stigma and returning poz folks to being ‘untouchables’, it also fails to prevent a damn thing the moment some otherwise educable person sees a healthy poz person who’s either doing well or not yet in need of them. That counterexample kills the credibility of those who rely on fear for prevention.”

Me, I cringe every time I hear poz speakers use the “scared straight” approach to prevention with school kids and others. I just don’t like what it says about me - or, of course, that it doesn’t work.

As an aside, I mentioned smoking earlier, and how it’s been compared to barebacking. There are also comparisons to be had as to how we as a society have tried to get people to quit smoking. Fear-based prevention messaging there has reigned, of course.  Effective in getting people to quit too, by all accounts, but we’ve also seen how those campaigns have stigmatized smokers. Those folks really are pariahs now. In this case, I think the end justifies the means. Or am I, as a reformed smoker, showing my biases here, and running rough-shod over smokers’ rights?

*********************************

In other news, and on a more optimistic note, this comes to us from the brand new White House website:

 “In the first year of his presidency, President Obama will develop and begin to implement a comprehensive national HIV/AIDS strategy that includes all federal agencies. The strategy will be designed to reduce HIV infections, increase access to care and reduce HIV-related health disparities. The President will support common sense approaches including age-appropriate sex education that includes information about contraception, combating infection within our prison population through education and contraception, and distributing contraceptives through our public health system. The President also supports lifting the federal ban on needle exchange, which could dramatically reduce rates of infection among drug users. President Obama has also been willing to confront the stigma — too often tied to homophobia — that continues to surround HIV/AIDS.”

Cool beans, I say!

Reporter Rosie Dimanno sounds off (again) in the Toronto Star today about criminalization of non disclosure. She’s for jail terms, of course. And she thinks Mark Wainberg is an ass.

Wainberg is a Montreal-based HIV/specialist/researcher who, though negative, is very much one of us. He’s a well known figure in the Canadian and international AIDS communities, opened the International AIDS conference in Toronto in 2006, in fact, with some digs at Stephen Harper, and he recently spoke out forcefully against criminalization. His position is the one I and others have voiced here - criminalization is unnecessarily stigmatizing, counterproductive (it leads to more infections through a warped view of shared responsibility) and there are other waaaay more effective and less intrusive ways of dealing with folks who needlessly put others at risk

You can read the text of Rosie’s article here: http://www.healthzone.ca/health/article/573316

Rosie lashes in to Wainberg for suggesting that criminalization deters people from getting tested. (She may have a point; I’ve always thought that the case for this assertion - at a time when we profess to be evidence-based - is a bit weak. ) But then she goes further - and loses touch with reality.  ”Testing is not remotely ostracizing” she says,  ”nor is a positive result.”  Rosie, where have you been?  Do you know anything about HIV?  And have you talked to a person living with HIV, ever?

The need for negs to assume every partner is positive and for us all to take responsibility for our own health gets short shrift here too. She talks about one charged man “recklessly, wilfully exposing two women to the virus” but neglects to mention that these women chose not to protect themselves. (That behaviour strikes me as both reckless and willing too.)  She waffles on about the “victimization” of sexual partners “so they are unable to take informed decisions or protective measures.”  Why they were unable to do so isn’t clear to me at all, but clearly the poz guy’s always exclusively to blame, right?

Of course she also misstates Wainberg’s position horribly - and I’m hoping he will jump in and correct her. She says “he promotes duplicity - the right to withhold information from an intimate partner while exposing them to illness and possible death.”  Of course he does nothing of the sort; he merely asserts that criminalization is not the appropriate response to non-disclosure.  But why bother with the facts when Rosie’s on a roll?

It’s interesting, isn’t it though, that discussion about HIV tends to polarize people rather than draw them together? We’ve seen it to some extent in the poz-neg debates here. We certainly see it in the criminalization debate where virtually nobody seeks to occupy the middle ground, or seeks to compromise, or even understand each other.

On the other hand, people like Rosie don’t exactly make us “apostolic advocates” even want to find points of common ground. We seem to have an entirely different set of beliefs and ethics, sometimes the result of being poz, sometimes not.  We can be terribly far apart sometimes.

Will we ever get on with folks like Rosie? Will we ever realize how squaring off, trading insults and just not relating to each other charitably can be so harmful? What does all this do to reduce stigma? And what are the consequences for the epidemic of not doing so?

Anybody think there’s hope?

Some folks write to the site, instead of leaving comments here. Their emails are an interesting read; they often voice opinions which wouldn’t otherwise have been heard.

Most people are pretty complimentary;  honestly, the word “amazing” appears quite often. One person used the words “disturbing, blunt and effective” - I liked that too. But there are also some criticisms and I wanted to deal with three of  those today.  These all incidentally revolve around disclosure. I’ll paraphrase them for you.

Accusation  # 1 : Disclosing is not a choice, poz guys have to disclose their status when having sex. You are nasty, irresponsible people for suggesting otherwise!

My reaction?  Clearly there is a bit of work to be done here, involving both poz and beg guys, in helping folks understand exactly what the law says. There seems to be a common perception that the law says disclosure is alwasy necessary  BUT a) that’s not true, and b) if neg guys think poz guys will disclose always, they are unnecessarily putting themselves at risk and c) we need to repeat that the greatest danger of infection comes from newly infected/infectious guys who don’t know they are poz, so disclosure isn’t the magic bullet that keeps everyone safe. In short, the law, and folks shaky understanding of it, have created a minefield of dangerous misconceptions.  In fact those who say the law results in more new infections, not less, are probably right. How we dig ourselves out of this mess I’m not sure, but more education on it will help.

Your reacton ?????????

Accusation # 2: Stigma makes poz guys lie about their status, therefore all sex is dangerous and scary. You are nasty irresponsible people for spoiling sex for me.

My reaction? Stigma certainly isn’t a helpful factor in having people talk openly about their status, but accusations of lying about it aren’t helpful either. I don’t really know whether many people lie; if they do I understand, but don’t approve. I suspect a much more common way of dealing with being poz though is just not talking about it. And that’s OK, in my book, if you’re not exposing your partner to risk, or not considering a relationship. But if some neg guys are relying on partner disclosure as their safer sex strategy, that’s just naive. Why not revert to the strategy of treating all partners as if they are potentially positive?  So that lying, if it occurs, is hardly an issue.

Your reaction: ?????????

Accusation # 3: You’re excusing poz guys who don’t tell their partners their status. You are nasty irresponsible people for encouraging dishonesty.

My reaction? This all seems to stem from that slogan “If you were rejected every time you disclosed, would you?” which has been much discussed here. Some folks whose opinions I respect have questioned the wisdom of choosing this slogan for this same reason - that it appears to condone,. perhaps even encourage, nondisclosure. Regardless of the fact that disclosure isn’t always required by law (see above), I must admit it does concern me that folks have interpreted the campaign that way. So was that slogan a wise choice? Can we afford to have negative interpretations of it out there? Honestly, I’m not sure.

Your reaction:????????

Let’s hear from ya!

We’re done with fag and queer and a few others. Now its the turn of cocksucker.

Reclaiming words that have been used as insults, notably by straights, has been a useful tactic of the gay community to confront homophobia . It works. Call me queer and I’ll likely say “why, thank you”.

But cocksucker has always been a bit of a hold-out, so loaded, in fact that it still strikes me as hateful. I’m not sure why. So that while we call ourselves fags and queer with impunity, I don’t hear many people calling themselves cocksuckers. Except perhaps in jest.

Not that there’s anything wrong with jest.

I hadn’t realized that Saturday Night Live had given debunking the word cocksucker a good shot, though. What follows is likely the funniest, and filthiest, skit I’ve seen from them in a long time, with Janet Jackson, no less, doing the dirty. If you haven’t seen it, you must. It’s here: http://video.aol.com/video-detail/snl-soaking-cork-janet-jackson/850374212

 (Sorry for the picture quality, and btw, this is NSFW.)

What does this have to do with HIV stigma? Well, perhaps it addresses the kind of homophobia that, a couple of posts ago, was fingered as a key co-factor of much of the stigma that surrounds HIV.

Or perhaps it’s just a ruse to enable me to post a very funny video.

You be the judge.

 . . about what’s causing this.  But if you’ve been following along, you’ll note that we’ve had a lot of comments.  Most of them, though, seem to have been from positive guys. In fact Rodger pointed this out on Brian’s latest entry.

Sites like this generate way more lurkers than people who actually leave a comment. We’ve had about 20, 000 visitors or so, of which only a fraction have commented. That’s not a problem. But I’m left wondering how many of those visitors were poz vs. neg.  If the majority of those who’ve commented have in fact been poz, does that also apply to the lurkers?  We’ll likely never know. But nevertheless I can’t help wondering why there have been relatively few comments from neg guys, when here in Toronto they outnumber us poz guys four to one.

The campaign is, after all, heavily slanted towards getting neg guys’ attention. I mean isn’t that slogan: “If you were rejected every time you disclosed, would you?” intended to provoke neg guys not only to think about that concept but visit the website to learn more?

I have some possible theories why the site may have attracted more poz guys than neg guys.

1. Most of the facilitators are poz. Neg guys might have taken a look around and thought it’s not a place for them. Or perhaps they felt their views would just be shot down.

2. Some poz guys have a natural interest in all things HIV (I sort of do myself) so poz guys are over-represented when it comes to comments. Or perhaps it’s just more likely that poz guys want to talk about it, to dialogue with others. etc.

3. Perhaps many neg guys don’t want to discuss HIV, period. No way would those guys want to visit the site, yet alone leave comments.  It’s the head-in-the-sand syndrome, perhaps.

I’m sure there are more reasons; I’d really like to hear what other guys’ theories are on this though. I’d like to stress that I’m not questioning the value of the site. It’s a place where poz guys can and do dialogue about issues of concern to them - and let’s face it, there’s a dearth of similar venues - and It’s been invaluable for that alone. But I’m just trying to learn more.

Seems to me, be being gay is a bit of a journey. (For an animated  - and quite cute - look at this,  see here: http://www.youtube.com/watch?v=0SBLqqSmXIo )  In any event, there are times in our lives when we want to engage on issues like this and times when we don’t. If I look back on my life as a negative gay man, HIV sure wasn’t a subject I wanted to hear about most of the time. In fact, I studiously avoided any talk of it. Probably not a good strategy for a gay man in the 90’s, ’tis true, but there you are. Maybe that attitude is still common.

Anyway, waddya think? Why not much neg commenting here?

Who’d have thunk that Darren James, star of Black Dicks in White Chicks III and scores of other similar - errmm - entries (honestly, his filmography goes on and on: http://www.adultfilmdatabase.com/actor.cfm?actorid=2226) would have something to say about HIV stigma. But in this month’s POZ magazine, he does, and it’s quite enlightening.

Although Darren’s name was unfamiliar to me - largely because Black Dicks in White Chicks III isn’t exactly my niche, as it were - he is apparently notorious in the adult film industry not only for becoming HIV positive but for infecting, unwittingly it seems, a number of his female co-stars. He’s since retired, and talking about the experience. Good for him.

Read the POZ interview here: http://www.poz.com/articles/darren_james_porn_hiv_2271_15639.shtml

What interested me particularly about the article were Darren’s comments on the reaction to his diagnosis. “Many heterosexual guys with HIV experience a double stigma, which is different from that of our gay and female counterparts. Not only do you have HIV (big stigma there), but everyone you run into, even people within the positive community (even those who profess to be knowledgeable about transmission), will insist you must have gotten it some other way. They might not say it to your face, but they’re usually thinking it. That part about living with this disease as a heterosexual guy really sucks. A lot of positive women don’t want to believe you when you tell them you got it from a female.”

That comment, more than slightly homophobic, really sucks too.  Darren is saying that not only do people know he’s HIV, but - jeez, they’re thinking poor James is gay too. How yucky is that?

Having said that, he makes a point worth dwelling on that has nothing to do with Darren’s neuroses. Namely, that many folks with HIV experience stigma from more than one direction. Darren is HIV, but he’s also a porn star (one who didn’t use condoms) and he’s black, and girls think he’s a fag. He was also diagnosed in the “age of enlightenment” when it’s considered by many to be downright dumb to contract HIV.  That’s a lot of stigma to handle, isn’t it?

But he’s not alone in this stigma-piled-up-on-stigma state of things. Myself, I’m pretty lucky. Why? I’m positive but I don’t have Hep C. I don’t have a prison record, a drug habit, work in the sex trade, nor am I homeless. But I’ve worked with many poz guys who share more than a few of these attributes. Letting the world in to see even a fraction of that burden must be exceedingly difficult, a brave act indeed. Yet people do it.

I guess I’m suggesting that HIV stigma is seldom a stand-alone concept. Many of us are HIV and gay, which combined, carries its own stigma, albeit perhaps reduced from days gone by. (Remember when there was a distinction between “innocent victims” of the epidemic -  the blood transfused - and us gay men?)  But so many out there have it worse, much worse, dealing with multiple layers of stigma, and I’m beginning to think that if we just tackle the HIV stigma alone, and don’t address the “cofactors” which compund that stigma, we are kind of missing the boat.

Wadyya think?