I’ve been a bit remiss about keeping up to date with my posts. Truth be told, even with all the suggestion that we’ve had, I feel a bit of a writer’s block.

But let’s give it a collegial try as I’m going to put this post on Twitter. Originally when I heard about Twitter, I hated the idea. However, once nudged to try it, it has been a great way to disseminate bits and pieces of information to a wide audience. It, I learned, is called microblogging.

Since I’m inviting a new audience, perhaps I’ll use this venue to explain what I’m doing as it relates to stigma.

It seems in this day and age, within the gay community, as HIV positive gay man - I do not profess to speak for everyone, for more points of view go through the site - feel marginalized and hidden.

For example, the Executive Director of one of the Gay and Lesbian human rights organizations told me that she was tired of HIV dominating the scene and getting “all the money, and that it affects everyone now.” So we are being mainstreamed out of the picture now.

We are made to be invisible, and if we are not such as myself, then the attributed “AIDS” label is enlisted, and then shelved in the appropriate box. Why is it that my blog is never looked at for “Queer blog awards” It’s a personal pet peeve to always be put in the “other” box. I could care less about the award, it’s the otherness that bothers me.

Many complain about complacency and how HIV is no longer given the attention it merits given the amount of barebacking, rising infection rates, sero-sorting resulting in risky behaviour and so on.

Once I read a comment saying, “gay guys with HIV got are easy.” Well, I’ve been to Africa to work, and yes it is shocking over there, but by that logic and standard then anyone who has running water pretty much has it easy.

HIV negative guys were shocked in focus groups leading up to this campaign to hear that we, the positive, feel stigma. The fact that we have to hide our status, always assess situations, deal with rejection, hide in our work places, fight for access to appropriate treatment and then suffer the side effects, unable to work, loss of direction and depression, poverty, and on and on it goes.

There are ASOs right?

I’ve been a long time activist who has turned to his, what has often been described as “sick”, sense of humour to make my presence known.

I will not succumb to stigma and discrimination (and this is by no means a criticism who are not out about their status).  As I write in my blog, I will not allow others to define me as dirty, unhealthy, diseased, or anything else UB2.

Many HIV negative individuals believe they can be judgmental, discriminate, or whatever else they may fancy without anybody challenging them because we are supposed to be too afraid to be identified. Now, granted there are many who put out their status on profiles etc.

But I’m not so sure many are used to someone using the Diseased Pariah News inspired sense of humour. There’s a little history lesson of our pioneers back in the day.

I’m on Twitter as a D-List AIDS Celebrity (a statement about the stratification of the HIV community) with my own make a wish to meet Kathy Griffin.  After meeting a young guy who lost one of his balls to testicular cancer in Australia, and was sent on this trip by the Make A Wish Foundation, I figured that was ageism, and when do I get to make my wish?

My “When Karen Calls: HIV Holiday Tips” gave all my tips I’ve amassed while enduring horrible anti-retrovirals while attending dinner parties.

OK, enough of being self-indulgent. The point is that you got to friggin shock people these days, and if I have to be the John Waters of AIDS to do it, so be it.

I also have to admit I live in a bit of a bubble as a result of creating this world where I’m completely out.

People are still being disowned by their families, discriminated in the workplace, prosecuted, rejected by their communities, and dealing with homophobia by proxy.

I welcome those who do not live in a bubble to share their experiences and unwrap stigma here.

I’ve heard that many do not disclose, and I honour that choice. But what I’d like to know does it feel to have this running in the background where no one can see it? How do you feel when you meet someone new? How do you feel with family? What is it like at work? How do you feel with you see clean UB2.

At a meeting last night, the subject of this campaign was brought up. There was one comment from someone at the table that he felt that there was a paradox with this campaign in that by (if I understood correctly, as we didn’t have time to get into it) putting this stigma campaign out there we may be creating more stigma.

I’m open to all discussion. This fellow is someone who knows and grasps the realities of living with HIV, and stimga on personal and systemic levels. I respect his point of view.

What do others think? Do we visually reinforce stigma by having HIV Stigma as the title? Would we be generating homophobia by having a Gay Stigma campaign. I can kind of see his point to a degree.

I’m not suggesting that his viewpoint is motivated by political correctness, I think there is more to it that how the campaign called itself, and I look forward to exploring this with him.

However in thinking about some of the reasons why one might think that the campaign in itself could be stigmatizing I have to think about language. And when I think about language it’s not always about righting off the need at how we look at it as a simply case of PC’ness.

Are we on the cusp of looking at different language, and if so, is it because we really need to do, or are we entering the never ending cycle of political correctness of changing labels and then as the former semantic baggage moves on to the new title, a new label is created until we have reached the status of anti-immune-suppressing-viral-apprehension campaign?

Is a rose still a rose by another name, or in the third decade do we have take a new look at how we present and look at these issues.

While in Montreal I was privy to survey results prior to their official release yesterday. There were few things in it that struck me, especially in the context of anyone claiming “stigma” does not exist. It’s kind of a reverse of “I think, therefore I am” to “I do not see, therefore it does not exist.”

Great for a title of some sort of metaphysical book sold in a new age shop, but doesn’t help much when looking at the broad macro experiences of living with HIV.

The title of the document is:

HIV+25 SURVEY ASKS WHERE ARE WE IN CANADA TWENTY-FIVE YEARS AFTER DISCOVERY OF THE VIRUS

Five Canadian AIDS service organizations (CAS, ACCM, AIDS Committee of Toronto, COQ-SIDA ) with the support of Merck Frost Canada to look at stigma and HIV twenty-five years into this epidemic.

The survey was conducted national wide last summer 2008 by an independent research firm.  They had 391 people living with HIV fill out a questionnaire to check in on various experiences.

Out of this national pool (and this isn’t meant to be scientific research, but you cannot argue with people’s experiences) 82%, yes all you “oh people don’t experience stigma” take a look at that. A very large majority felt they continue to combat as the press release says, “huge stigma.”

In addition, over half (55%) feel depressed, and 45% felt there were isolated as a result of living with HIV.

I won’t get into the treatment related aspects of the survey. As I am always happy of hearing about those who have been able to carve out a way to live with HIV in a way that hasn’t brought about any rejection or negativity, this is not the experience of the majority.

It’s time we wake up as a community as stop caring about how fast we can get juiced and buffed up for the next big party, how many guys are cruising us, are turning heads, how much attention am I getting, how much sex I can get, and start trying each other with a bit more humanity. (ok that was my Larry Kramer moment)

It no wonder guys don’t feel like disclosing.

Oh by the way, I’m doing my annual “She’s still here” Tour on Proud FM with my friend Shaun Proux. It’s a tradition that started last year with a story far too long to go into here.

I lied, I wrote a post here this morning saying it’d be my last for the weekend. Here I am though, more awake, feeling less fogged up from a cold, and on top of it all, finding myself with some extra time in my very expensive boutique hotel here in Montreal.

This is just for one night for some meetings and I fly back tomorrow. Sometimes I joke with negative friends, “Now don’t be going out and getting this just because I manage to pull it off so glamorously! Many have tried only to be disappointed.”

That’s always my disclaimer. In fact, once, a long time ago, a friend came to my place just after going for his test result. He was still stressed and I couldn’t tell which way it went.

Sitting beside me he looks at me, very seriously and says, “I went and it came back….and it was negative.”

Because I couldn’t believe how serious he was still about it, I consollingly put my hand on his knee and said, “You know, “A,” it’s ok, It’s not for everyone. Not everyone cam pull it as gracefully as I can. It takes a lot of work to make this effortless, it’s probably best this way.”

“A” had this look and then suddenly smiled. Unfortunately a few years later he did find himself to be positive, but it wasn’t me who welcomed him in to the club on that one.

For me, fighting against stigma has meant using humour. I have my blog, I joke about the AIDS star status system and how, and write how I became the Kathy Griffin of AIDS on my Blog, Acid Reflux Presents: My Life on the AIDS D-List.”

This is my way of just being myself, shocking people, and more or less thumbing my nose at anyone who wants to define me as “diseased, dirty, unclean” etc etc. By writing so openly and laughing at my life, I feel as if I’ve taken the power away from people like that.

This is the voice that I’ve created over the years. It’s kind of in your face, well a lot. I hope to provoke, and I even hope to make some feel uncomfortable.

I hated the acronym AIDS so f’ing much. I’d correct someone who suggested that I had “AIDS” in .5 of second and they’d never do it again. But now here I am throwing it around. Suddenly I’m not so bogged down by the word. I don’t have it, well, I did for about three weeks when my CD4 went below 200, but then it went up again and I went to being the average positive. Maybe I could still qualify as “poz, depraved and undetectable” skipping the healthy adj. all together.

This week I’ve been feeling not well, edgy, and well pretty cranky. It’s probably been obvious. But at least a 24 hour trip to a boutique hotel in Montreal for one day of meetings out to give my back my glamour card and boost my spirits.

I’m not sure the point of this post was, but what the hell.

Maybe it is, “What do you do to cope? These have been some of the ways I have, what about you?

While preparing for a discussion tonight on stigma with a group of positive guys, I decided that perhaps I’d focus on the stigma website as a template of what kind of issues to covers.

Thank god for this website as they’ve done all the work for me. Plus it’s in French and the site has everything available translated giving me any vocabulary I might have been missing.

Under one of the sections speaking to examples of stigmatizing behaviour the subject of gossip came up.

This is a HUGE problem. You don’t know how many stories that have been recounted to me about someone pulling a prospective fuck in a bar a side so they can be warned of the fact the guy is positive.

Once again, I know what gay men can be like, and beating them to the punch by disclosing to the world has always blown the sails out of anyone’s gossip wings.

I do though have to recount one story from the days I lived in Winnipeg, which I thought it was actually funny.

My 6-foot Jewish drag queen friend, who had a razor sharp wit, one night, went out to “The Club” as we called it. This must have been 18 or 19 years ago.

He wasn’t in drag at the time. While sipping on beer, someone, I can’t remember who, came up to him and said:

“I didn’t know that Brian was sick.”

“Sick” he replied back making a squishy as in I can’t believe you just said that look, and continued with, “Depraved maybe, but not sick.”

And don’t think that this doesn’t go on today. This is an Ontario-wide campaign so lets not get GTA-centric here. The realities of gay men in smaller centers are very real.  Even still the gay community is still a small community within a large city.

What does this mean? Well many guys don’t want to disclose because they are afraid that they will lose control over their ability to choose who they share this information with, and who they don’t.

Even though I’ve very public, it still pisses me off is someone decided that he has the need to discuss my status with someone else. It’s simply bad etiquette and says to me this is not someone to be trusted on any level.
Once a friend told me about being in Woodies to meet a guy for a drink. He went to the washroom, then upon he discovered that potential date had gone through his little “man purse” only to find this Abacavir reaction card, or something alike.

Again, for those who think it is always our responsibility to disclose, I challenge you to tell my way in the face of such horrific behaviour why we wouldn’t think about protecting ourselves first when faced with these kinds actions.

What I’m trying to do is slowly peel off the layers of complexity that exist for gay men living with HIV in our community.

There are a few people who need to get off their ivory tower of judgment and see what our lives are really like.

I’d like to openly muse about exactly what is stigma. It seems to be discussion that needs to be revisited over and over again.

I’ve had friends make the statement “I’ve had no stigma therefore it doesn’t exist, that’s something of twenty years ago”. That always shocked me.

Why is it that I am able to see it if even if my experience of and out and out rejection has been extremely rare? Maybe that’s due to the fact that I’ve lived almost half my life out in the media in a way that very few do. Overwhelmingly I’ve been supported and have had great experiences engaging with the media.

Nonetheless, the feeling of vulnerability when living in a city of 108,000 people and having just done a three-day media blitz is a feeling that few people living with HIV have had. Now I’m back in the media, writing for Fab, a blog,  a mirror site on Gay Guide Toronto, and this campaign. I’m feeling exposed again.

You don’t know that feeling, but just imagine that  you have no idea if every person you meet in a day  knows what about you, and the assumption has to be made that your status and everything is out there.

Yes, having something in the public will lend to that feeling, but putting HIV out there like that is completely different. It’s different because it is HIV, and thus carries the baggage of stigma.

This says to me that stigma is much more than a “no thanks” because of ones sero status.

To anyone who is HIV positive and claims stigma is a thing of the 80s I’d have to ask you the following: Does everyone in you life know you are positive? And if not why? Do any or all of your work colleagues? Does your entire family including aunts and uncles, cousins? Would you be prepared to be out full name in the public writing about your experiences living with HIV? Could you even leave your name on a site like this outing yourself with your full name?”

If there were absolutely no HIV stigma out there, then why would any of this be a problem?

This campaign confronts us as Canadians who believe we are so polite that stigma and discrimination no longer exists.

We state preferences, it sounds really “nice” we say Clean UB2, where’s there harm in that, I’m just trying to protect myself. No blacks, Asians, fems or fatties. Well I can’t help what I am attracted to.

In the end you will like or dislike, do or not do what you desire. But it is all about how you do it, and communicate it, and treat others in the process. This seems to be one of the huge points that is being missed.

That, and infection rates are going up with gay men, so whatever your protection strategy, if it’s one with emphasis on preferences than behaviour, you’ll probably be another statistic.

Looking for discussion inspiration, I surfed back the “The Again” Australian site on HIV discrimination issues. Under issues affecting one’s desire to not disclose, or better said a drawback to disclosing was:

He may want to talk about it and you might not want to play the role of a counselor or educator at that time.

Here is a big one for me. It’s not as if I never want to play this role but it depends on a few issues. I’d never not disclose because of it. As most people know, by example of this campaign, I disclose far and wide. It’s easier and gets it out of the way, allowing me to rarely think about it.

The biggest variable is “How much do I have invested in this guy?” If the answer is “About an hour.” Chances are that I’m not going to want to spend the time at all. I’d hand him the number to the information line, and wish him well.

If this was a guy who had the potential to be more, or there was a connection on a deeper level than by the hour, then I’d be willing to get more into it. Again, it would depend on where he was at. He if was totally freaked out, he may be in a play that is beyond repair, at least for me.

These are the cases that are best outsourced to real counsellor who’s been funded to take care of those needs. If the guy was hesitant, but just didn’t seem to have all the information, but was committed to working with me on this journey, I’d spend the time.

What gets me though are these negative guys who freak out with absolutely no awareness about how this affects the positive guy, AND THEN, expects the positive guy to hold his hand. First, in the negative guys mind, it’s OUR responsibility to disclose vs. their responsibility to protect themselves, and then when we do disclose, we’re supposed to proved them with emotion support. This doesn’t add up.

I don’t know about you folks, but I can’t think of a better way to spend my night that counselling someone about the fact they are terrified to be with me.

Could you imagine someone dealing with Cancer who had to go around consoling others in order for them to be comfortable around them?

I think not, and for me, it’s this unawareness that is the real turn off. Perhaps I’ve got a chip on my shoulder, but living with this since the mid-80s, I’ve paid my dues. There was a time when I could understand ignorance, in this day and age, 25-years into this, my tolerance level for it has gone way down!

How do others feel?

A controversial poster by the L.A. Gay and Lesbian Center to try to focus attention on the rising rates of HIV among the gay male population in the region.

The mainstreaming subject came up when recently challenged someone’s comments that was “tired” of HIV being linked to gay issues. This extended to funding all the while saying things such as “Well it affects everyone now.”

Had this been an ordinary private conversation, I would have left it.  Instead, it was very public, and this person is the executive director of an NGO that is supposed to represent the gay community.

The basic summary is that some folks out there in our community resent the resources and attention being diverted to HIV in the gay community, and try to use the mainstreaming argument of the 80s to support it.

This is why comments such as “Gay guys [with HIV] have it so easy.” It used to be in the 80s we fought to be recognized by the outside world such as government, and no we are fighting within our own community.

It feels as if we are a mere once-a-day pill away from becoming invisible. I hadn’t realized that we have become so mainstreamed and marginalized. So much so that we have come full circle fighting for our place again.

After having worked in Rwanda, I personally have seen, and have friends who struggle with HIV and abject poverty. Yes, for those of us who have access to resources, we are privileged, nonetheless, our path are not easy relative the context of our lives.

Lest not forgot that many in Canada also live in poverty.  Anyone without a proper disability will live thousands of dollars below the poverty line. Depression is depression, stigma is stigma, discrimination is discrimination, no access to the right drugs is no access, side effects are side effects, lack of housing is lack of housing, and so on.

In Kigali, it was amazing on how much we did have in common, even though gay men do not exist (in their culture) in that part of the world.

Initially the only way we could get attention to HIV was to make it mainstream. Gay men didn’t matter. It took Reagan five years to even say the word. We’ve moved passed this now. Decades later gay men remain at greater risk, and there is no getting around it. All risk is not equal within the Canadian population.

My view is that HIV is touching so much of us, and I didn’t put my face in the media twenty years ago, having my father find out my status on TV, so that others sweep us under the carpet of mainstreaming.

Taking ownership of this issue 25 years later is not the same as claiming it our own along with the other sub-epidemics back so many years ago.

Probably those who are negative see this as an integration of positive guys in the gay community. But really it’s, in my view, it’s a comfortable invisibility for those who wish to not see us.

Since I brought up cognitive issues during a comment of mine, I thought I might delve more into this subject, and relate it back to stigma.

In many ways the struggles of living with HIV are invisible. So invisible that gay guys have no clue why it is obnoxious and insensitive to pat someone’s belly and make a comment. Our struggles are so far off their radar, they simply are clueless. We have it easy, don’t you know.

Back in 2003, I began translation studies. It was upon the initial translations I wrote I realized I needed some help. I hired a former English professor to help explain grammar etc. Even with his help, it was impossible for me to hand in an assignment without having missed some really stupid and obvious mistakes.

Now everyone says, “Yes it’s hard to edit your own work.”  For me it was impossible. Determined to get an A on my final research and documentation class, I literally printed it out 30 to 50 times, each pass finding a another missed little mistake.

Then things got worse, I had increasingly more trouble spelling, and it continues to go downhill today. It feels like a learning disability combined with dyslexia  From time to time I’d type a completely different word than I was thinking, or leave words out all together.  When I was taking Sustiva I was unable to write comprehensible emails. Today, I can no long see the mental images and shapes of words that I used to be able to spell.

Now, during workshops I’m terrified to write on flip charts always asking someone else to do it. I hate writing in collective birthday cards or some other kind of congratulatory card as I always write “congratulations” wrong.

Yet, despite this, I continue on because I enjoy writing, as I have no problems with the message, just the mechanics.

This kind of issue I think is one of the most difficult. I’m afraid to look stupid, or that guy, “He’s  such a flake.”

Spatially and directions are getting worse as well. My recent trip to Montreal and being constantly lost with my equally as directionless friend really showed me how bad that’s getting. At one point, I could not conceptually figure out on the map if we took a right or a left, it was like that word I couldn’t see, just blocked.

Finally, on another common topic, as one person touched upon, there is depression. Its hit me ever since I had my diagnosis, maybe earlier. The prospect of dying in the 80s in my early 20s was not as much fun as you might think it would be.

I feel with the change of the season, as I write the depression heading back. Mental health issues are more cloaked than HIV. So the layers of stigma pile on. HIV, and living with it is complex.

HIV stigma not a simple case of disclosure. We live with it constantly, from being asked to justify why I’m disability to being pat on the stomach.

It’s lying to your boss as to why you need to go to a medical appointment. It’s hiding your medications at work so people do not see, or even sneaking away to take them. It’s having to decide when is a good time to tell someone. It’s wondering if these people knew the truth about me, would they still like me, would they see me as being different as they see me now. It’s being depressed and not being able to explain why.

Even though that bitchy comment about grammar doesn’t have anything to do with my cognitive issues, other than had I written in Word I may have caught it, it still is stigma. It makes me feel bad about myself regarding issues that I have no control, and that I try to manage the best I can. Fortunately I have a wonderful editor at Fab Magazine, who never gives me the feeling I’m in any way deficient.

When positive guys feel shitty about themselves many, like myself, isolate, while others might act out sexually and not disclose to avoid the rejection. Others, like I have as well, have gotten into drugs, with or without implications of sex.

Like a drop eroding a rock over time, all of these things add up. Peoples unawareness and actions each constitutes a drop that wears us away.

We are all interconnected like the movie “Crash.” There is cause and these is effect. One single stigma-inducing act of behaviour can come back at you in ways that may never be seen.

HIV Stigma, my new morning routine, that and a cup of coffee. Who would have thought?

Ok,I wanted a title that would grab peoples attention, cheap ploy, I know

Weekend Post story sharing time.

One day I had an encounter (well communications via messaging) with someone who was looking for a group sex thing, but wanted everyone to be negative. I decided to be polite and say no, that’s ok, I don’t think I’m the kind of guy you’re looking for (my status is on my profile). Then we got into it. I still was very nice, didn’t take personal offence.

He put me down as one of his “friends” and forgot about our chat, and re-invited me to one of these things. And then I got into it, not viciously, but more like, “Look I was polite once, this is the second time, it’s well marked on my profile. You don’t go around messaging people for “white only” parties to men who don’t fit that description, so I’d like the same respect please.

I won’t give all the details other than he apologized and then we started chatting about how it came to be he was organizing these things, why he was asking for negative only, etc.

Through our conversation I understood how he got to the place where his was at in organizing these things and why he was looking for negative only. I might not of agreed with him, but I understood it. He turned out to be a very sweet guy, and if he hadn’t lived in New York (he was organizing for Toronto) we would have met up.

The moral of the story, we are all human. Once we take the time to make a connection and actually communicate, the issues are taken from abstract ideological views to a form that is more real and human.

Thus, the ultimate goal of this campaign. We need everyone as much as possible to participate, negative and positive alike.

This is supposed to be a safe place to share. I won’t cut your head off if you share honestly and respectfully.

Ever since I had that one particular exchange with the guy from NYC, I look at the guys a bit different online who used to really piss me off.

I still think trying to serosort yourself into a false sense of protection is not an effective harm reduction strategy, but maybe someone can convince me differently.

HIV Stigma is not just about disclosure. I’d really like to invite others to comment on what they think it is to them the negative guys. Others contributions will help make this campaign a success, and give us ideas of topics to write about.

HIV Stigma is sexual, social, medical, employment, housing, school, religion.

Enough of me writing, I want to someone other people do the work here:)