Changing . .
This is my last post here on HIVstigma.com. It’s been a great opportunity for me - and I hope for many guys out there too - to explore an important but rather nebulous topic in some depth. Pinning down HIV stigma - what it looks like, what we think and say about it and what it does to folks - seemed at first like nailing jelly to a wall. Our first few conversations here, even our early video blogs . . . .
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are evidence of that. Now, stigma seems like - well, jelly on a plate. It’s still a bit hard to contain, to come to grips with, but we know better now the nature of it and what it looks and tastes like. Quite well, in fact, I’d say.
Too well, I wonder? Have some of us become so sensitive to stigma that we see it lurking behind every bush? Here’s an experience that just happened to me this week that caused me to ask that question.
I’m a researcher (believe it or not, because that is soooo not my background) working on a trial intervention with poz guys. The objective is to see if a group of guys’ approach to risky behaviour can be changed by a series of group sessions which stress a holistic approach to sexual health. It’s largely untried, anywhere, and potentially very worthwhile. The normal way to fund research like this is to approach various bodies for grant money. One such body, an incredibly esteemed one here in our province, turned down our application. That’s OK, we can likely resubmit. But in declining us, the reviewer - a behavioural scientist (I imagine) experienced in HIV research who remains anonymous - made what I thought were some startling observations.
“Despite continued unprotected anal intercourse among HIV+ people, an overwhelming majority of HIV prevention efforts continue to focus their efforts on HIV-individuals. This is problematic because working with men who are already HIV+ has a greater impact on the epidemic than focusing on those who have not yet acquired the virus“ he said.
Now this struck me as stigmatizing us poz guys - and I said so. It seems to be fingering positive gay men as drivers of the epidemic, when we know - or at least we should know - that they are not. Here are the facts one last time. the majority of new infections come from so called “neg guys” who aren’t aware of their positive status. Talk that suggests otherwise, I think, is stigmatizng, and I’m finding it increasingly annoying.
But in raising the issue of stigma lurking in the response to our grant application, I also raised the question of whether I’m being a little bit too sensitive. Has participating in this campaign led to me seeing stigma where it’s either not there, or perhaps more likely, not intended?
I honestly don’t know.
What I do know is that I’ve learned a lot. We all have here, I think. We’ve learned about how we think about stigma, about sex and about life. We’ve learned about strength, and about frailty. We’ve learned about our community too - about some of its very real strengths and some of our collective weaknesses we need to work on. We’ve learned to listen. We’ve learned to be respectful but we’ve also learned to be opinionated when we need to be (We’ve seldom minced words here.) We’ve learned about technology too and new ways to play with it, to exploit it and to explore it in future. And we’ve gained new friends. (If we’ve gained some enemies in the process too, they’ve been well-behaved ones.)
There are people who’ve left comments here - lots of them - that I only know by their first names, I’d love to meet them in real life and carry on these conversations over coffee. Perhaps one day I will. But to everybody who has dropped by and who has contributed to the discussions - or not (we have had lots of lurkers, and we love them) a big THANK YOU from me.
Now we go in to evaluation mode. We may be taking the show on the road too; it looks like I’ll be speaking about this campaign in both Toronto and in London shortly. And then, for me, it will be back to blogging about more everyday topics - the ebb and flow of my life in the country in particular. Follow me there, if you want, at http://ruralrob.livejournal.com/
Here’s looking at you, kids . .
February 1, 2012 11:50 AM
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March 7, 2009 11:24 PM
Thanks for visiting gryph . .
xoxoxoxox
March 4, 2009 02:19 AM
I am sorry I have missed so much of it, but am glad to have crossed into your work here. Part of me is upset to see it go, but I understand the nature of things.
Thank you, Rob. You inspire me to be more.
March 3, 2009 09:28 PM
Martin. It’s good to hear you’ve found merit in this campaign, and understand its relevance. By their very nature, campaigns tend to be time-limited. But as we pack up shop here, I hope this doesn’t imply that we think the problem of stigma has been solved or is going to go away. I think in fact our collective efforts have highlighted more than ever the importance of continuing to address it, in ways we’ve yet to fully explore. I think too, discussions here, and your comment also, have really highlighted the need to focus on the issue of the 30% of poz guys who need to be diagnozed - fast! Let’s get cracking now on inititives which explore that.
I do think many ASO’s have sat up and taken notice of this campaign, though. Let’s hope so anyway. As I said in my post, I think we’ve helped translate for them the rather vague notion of stigma in to something very real, with very real consequences to the health and well being of their clients and to their ability to do effective prevention work. And that the voice of poz guys is worth listening to!
Anyway, keep well, keep fighting, keep spreading the word, long after the campaign is gone.
Regards
Bob
March 3, 2009 07:40 PM
I’m kind of disappointed that this campaign is wrapping up. Did i miss a news story on a cure to HIV or an end to Stigma. This site should be at the very least required reading for ASO’s in the province. Far too many organizations have few HIV+ people within their ranks and therefore are ignorant to the reality of poz peoples.
Once upon a time an HIV+ result was a horrible death sentence (and relatively quick at that). At that time in our history the message was clear Practice Safer Sex or DIE. Now we live with what in most cases is a very manageable disease. Indeed the only message with weight that can/is delivered is the Stigma, Isolation and Social Pariah label and how that will impact ones life if they receive a positive result.
Granted i think ASO’s are focused on prevention, but we know that people who are HIV+ by and large act responsibly. We know that most infections are from people who have incorrectly assumed they are HIV-, until ASO’s deal head on with the issue of STIGMA and the fear of testing, they will be ineffective in making any noticeable ground on a reduction on infection rates.
The most recent stats for HIV in the MSM group in TO that I have seen are about 24% being HIV+ (<25=6%, 25-29=10%, 30-34=12%, 35-39=21%, 40-44=26%, 45-49=34%, 50-54=35%, 55+=25%)
http://www.phs.utoronto.ca/ohemu/doc/M-Track_CAHR_2008%20Final.pdf
Yet with these shocking numbers, a great deal of us feel alone, isolated, and destined to a life where we whisper and hide from the world.
If I didn’t have health concerns already, I’d develop an ulcer from the stupidity of the whole thing!
March 3, 2009 07:46 AM
Bob….Same here…it’s been a sincere pleasure working with everyone..!!! You guys Rock!! Cheers!!!
March 1, 2009 09:06 PM
Elliott, comments like this make it all worthwhile. Thank you so much, and thank you too for all your great contributions to the conversations here.
Keep well. We’ll miss you!
xoxoxox
March 1, 2009 04:47 PM
I suppose all good things must come to an end, but I will admit I will miss checking in on this regularly.
I would be amiss not to thank you all, wholeheartedly, for everything you have done. This site, coupled with the great advice from everyone, has made been recently infected with HIV very bearable and has kept me sane, I am eternally grateful.
Thanks again, you will be miss.
xxoo
E
February 27, 2009 09:02 PM
Thanks a million Rodger for being such a mainstay. Know that your thoughtful comments have really helped shape our understanding of how guys think; I even quoted some of your words - anonymously, of course - at the Gay Mens Summit in Toronto last week.
Anyway, I’ll miss you. Good luck and good health in all your future endeavours.
xoxoxo
February 27, 2009 08:12 PM
This site has had a huge impact on me. Thank you.
February 27, 2009 07:14 PM
Thanks Brian. I echo that for sure. And it’s been great working with you too.
February 27, 2009 04:08 PM
I’m just about to post my last post as well. It’s been great working with everyone. And I’d like to thank all of those who wrote in and help facilitate our online conserations!
Brian