Archive for October, 2008
Wednesday, October 29th, 2008
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.
Friday, October 24th, 2008
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:)
Wednesday, October 22nd, 2008
Here’s another one for you all, based on bumping into an Ex, yes I’ve had a few. This one, however, the most screwed up of them all.
Just take my advice on this one, if you meet a guy on the first date, and his last name is that of a serial killer, don’t go on a second date like I did.
When we got together, I was working and then went on disability and moved in with him. Another bit of advice, never move in for economic reasons alone.
The daily drinking when he came home from work turned into more and more, and of course, with my history, “no” wasn’t in my vocabulary at the time.
Things got messy, we were consuming 1000 dollars of GHB a month alone, not to mention the Crystal Meth, E, K, pot, and alcohol.
Suffice to say it was not pretty. At some point my survival instincts kicked in and I fled from this sinking ship. If I was going to jump off the Titanic, I was going to do it early while there were still life boats.
He continued on being a mess, a big one. He was negative, and was taking all sorts of risks. He was also obsessed with barebacking as a bottom.
At some point after I left, and I think he got into crack, he got online to invite someone over. He then proceeded to show all this barebacking porn. There was no discussion about serostatus. Mr. Crackhead clearly gave all the signals that he wanted a bare cock up his ass, and he got it.
The other guy was positive. Now let’s be clear here, I know both parties involved, and the messy one has put himself many a time into risky situations.
When Mr. Crackhead finds out he is positive, over the course of several events (to lengthy to go over here) he decides to blame Internet Date X.
Not only does he do that, he contacts Public Heath and makes Internet Date X life hell. That wasn’t enough though. Internet Date X was also involved in some other activities of which Mr. Crackhead knew of and proceeded to write a letter to those involved with that.
The sum of all of this was, Mr. Crackhead, drug addict spiraling on his way down,and constantly living on the edge, doing tons of drugs, and was pointing the finger of blame at someone else.
Of course this is standard practice for addicts, we don’t like to take responsibility, and like to play the role of victim quite often. I prefer to refer to myself as one in recovery, another topic not much discussed in our community. We certainly have no problem being a mess in public, but heaven forbid we should talk about it if it becomes a problem — a subject for another post. I was into the drug scene at this time as well, so I’m not thrown stones, if you know what I mean.
Internet Date X’s time with him was so brief that he can’t even remember what he looks like, but it was enough time to have a legacy that would destroy his reputation, and had public health calling for several years on a regular basis.
Mr. Crackhead then called me up with this was all happening to tell me he was “proud of himself” for what he had done.
I said, “Look [Crackhead] you weren’t raped, you played the game and you lost. If you want to go down on a sinking ship don’t try to take anyone else with you, you made your choices.
I stand by that statement today. If you are going live recklessly don’t blame others. Yes it takes two to tango, and this is what happens when assumptions get made.
I still maintain, you gotta be a real something special to be negative and assume that only negative guys would fuck you, and the play the victim once you become positive.
I know, this is where the outcry begins, “What about the positive guy he should have said something.”
In a perfect world that would happen, but in this imperfect world where so many things affect our disclosure such as non-verbal communications and assumptions lend for a rather imperfect result.
Yes it still takes two to tango. This is an ongoing pattern of blame, which happens and public health is the weapon of choice. I have many other examples where they have been called on guys who weren’t even positive. It’s not always black and white as you see in this example. Personally I would have disclosed, but I wasn’t there. But given Mr. Crackhead’s history how could one person be the focus of a witch hunt, when I’ve seen Mr. Crackhead passed out on GHB more times that I can count.
All I can say is thank god he didn’t seroconvert when we where together.
This is why I plaster my name everywhere; I want to protect myself from the crazy guys.
That brief chance encounter yesterday left me with the feeling of, “Oh that was soooo ten years ago!”
Tuesday, October 21st, 2008
I’ve lived an life where I’ve been public, meaning face in the papers, TV, radio phone-in shows, speaking in schools etc., for over twenty-years. Back then people were afraid to be in the same room with us, allow us to be near their children, or contaminate their dinnerware. I was once not invited to a dinner party because of this many years ago.
My father found out my status via a television interview I did for Radio-Canada, the French language arm of CBC.
Once the toothpaste is out of that tube, its really hard to put it back in. To be anything less than completely open feels inauthentic for me I respect those who keep it to themselves, I acknowledge my experience is not yours).
This means that generally speaking I meet guys who already know my status, thus creating an opting out process that I never see.
Disclosure has always been difficult in terms of timing. When is the right time to disclose? Do I need to disclose at all?
Some negative guys feel its their “right” to know in a bathhouse or some other anonymous casual sex setting. I disagree, my view is if you are not in a place where you can deal with the fact that there will be a mix of status, you shouldn’t be going there. Not to mention the amount of guys who do not know their status and think they are negative, as I said in the video clip, yet are much more infectious, will be present.
Pre-internet my guidelines were that in anonymous situations I wouldn’t say anything, and would never stray from using condoms. If this was a date, or even something that would turn into a friendship, I’d say something. Not for reasons of protecting someone, but for establishing trust in a relationship, whatever the form it may take.
Let’s face it, I’ve grown older and I’m different now. I don’t go to backrooms, and rarely a bathhouse.
However let me share an experience in one of the last times I was at one.
Bottom Guy: Do you want to fuck me?
ME: Sure, do you have any condoms?
Bottom Guy: No, but that’s ok.
ME: Are you negative or positive?
Bottom Guy: Negative.
ME: Well we better use on or you won’t be staying that way for much longer!
Most guys wouldn’t have asked. Who would be an unprotected bottom who isn’t already positive would be what would be running through my mind. Obviously in this situation, I decided to bring it up. Unsafe sex between two poz guys is another post all together.
On my online profiles I put out my status, this also selects out any potential problems.I generalliy stay away from young guys, although I do get them chasing me. If I were to meet one, I’d really make sure that I knew he was educated and cool.
Once again, my willingness to help someone in the journey in the world of serodiscordancy varies depending how I feel about the guy. If this relationship is going to be over before the egg timer goes off, I’m less likely to feel invested in making the effort.
I absolutely hate disclosure, says the guy who has his face, status and name all over the place. This is why I go to this extreme. I hate that moment of complete vulnerability as I procede with, “There is something that I wanted to share with you.”
Then a moment of silence passes which seems like an eternity as I wait for what will the response be. Is he ok with it, is it a problem?
Nine times out ten, I get a look of, “So….” but it’s the 1% that is enough to cause my gut to sink.
It’s taken a lot of time for me to not personalize rejection based on status as I used to. I used to feel as if it were a validation of my completely worthlessness and my inability to be a full participant in the human race.
Fortunately I’ve done some work on that.
My last statement: notice that when disclosure all the responsibility falls on us. We are the deciders of disclosure, support and counsellor for the worried well. When does a certain amount of responsibility fall on the shoulders of the other person in this equation?
Here are some quotes I found from an Australian disclosure campaign Think Again:
“I was at the pub and we’d been chatting for a couple of hours and getting on really well. I thought ‘Here goes…’ and told him that I was HIV-positive. He went to the toilet and didn’t come back! It doesn’t encourage me to do it again.”
“He’d been chatting me up persistently for a while and I hadn’t really encouraged him. I wasn’t going to go home with him. Then he told me he was HIV-positive and it made rejecting him more difficult - it wasn’t because he was HIV-positive.”
“He wanted to brush his teeth before we went to bed. I told him there was some unused (new) toothbrushes in my bathroom cabinet. He looked a bit tentative when he emerged from his teeth cleaning. I then went to clean mine - and saw in the open bath room cabinet my supplies of HIV pills…”
“I keep my HIV-pills in vitamin bottles. It avoids unplanned disclosure.”
I’ll refer back to this campaign in another post.
Sunday, October 19th, 2008
Sydney Australia (IAS 4th Conference on Pathogenesis), moments after I told Michael Kirby, former Australian supreme court judge that it was the meds causing my midsection weight gain.
Here is something that happened last week that raises a theme for me.
At a social event held at Sailors by an organization on which I sit on their board, I was having a conversation with someone I hadn’t met before. He started to ask me about the work I do, and I related to the work of this board and the directors of the group hosting the evening.
“So what do you do for work?”……
“This is what I do for work, I work with issues dealing with HIV” I replied. Yet, I was beginning to discover I was dealing with someone who would not let it be. And, this is when I become uncomfortable.
Why? Because if I want to tell someone I’m on disability, I want it to be of my own choosing, not because I’m forced, and I am not comfortable making up bullshit to tell someone. I’ve been way too out there in the public for far to long to start lying.
“Well yes, but where in a hospital, social services?” he continues.
“I’m sit on a lot of working boards and this keeps me very busy.”
“Yes but that doesn’t pay, so what do you do?” Now I’m getting annoyed so I just blurt it out. “I’m on disability, and although I do not officially work, I do much volunteer work which pays me in way such as being able to travel to Africa.”
(yes and I realize this where people go, “Oh those gay guys with HIV got it so easy.”
In an almost incredulous look — which I’ll take as a compliment — I hear “You do not look disabled to me!”
Now here is a point I’d like to make, disabilities comes in all shapes and sizes and are not always visible. People who say such things are not with me on a daily basis to see all the ups and downs I go through, the one entire year it took to get used to the seven drugs I take, including Sustiva (the drug in the once a day Atripla) making me literally going crazy.
They are not there when I’m sleeping for weeks on end, can’t cook food, let alone eat much. Or, for that matter that year and a half when I threw up everything I ate when taking a different drug, or the years I spent viremic (fighting the virus with no drugs) and having fevers everyday, completely exhausted and depressed. I could go on and on.
Instead they see a ten minute snap shot and start with their judgment, and why is it that *I* have to justify anything to anyone.
In any case, now my status is right out there in a conversation where I didn’t particularly want to discuss it. Can I not simply be a guy at a social event, and not some poz guy who now is explaining (yes I know I wasn’t forced to) why I’m on disability.
The clincher for me was when as I was putting on my jacket he reached over and across the table to pat me on the stomach, “Oh you’ve got a belly!”
Let me tell you, the drugs cause metabolism issues and fat doing stuff it normally wouldn’t I’m very self conscious about this. Yet time and time again, gay men who should know better pat us on the stomach and make comments.
I thought, I really should say (and all true) “You know I’ve had an Australain former Supreme Court judge, and the CEO of a Boehringer Ingelheim pat this stomach and comment on it, so if you are going to do that, you better be someone important, as I do have standards.
At the end of the day, I realized, I’m simply going to have to say I work as a consultant in the area of HIV. Depending on the context and the person I may or may not say more.
As for the stomach, I’ve started telling those who do it that this is a result of the medication and it would be very much appreciated if that were not to happen as I’m fully away of the changes of my body, and that you wouldn’t go up to a woman, slap her on the ass, and make a remark about the “junk in her trunk” so please afford me the same politeness.
So, now that I’ve had my two coffee blog posting, how do others deal with this if they have had similar experiences? Do people really know what they are doing when they start commenting on someone’s appearance? Friends have had stuff said to them knowing full well what it was, simply to be mean.
Stuff to ponder.
Saturday, October 18th, 2008
This time of the year is high season in the world of HIV organizations. I’m presently attending a long series off all day meetings and have to fit in my moments here when I can.
I must admit that I am so relieved that the first initial comments have not been hateful negative messages left by those who lack to ability to converse about these subject in a meaningful and respectful way.
Hopefully this campaign will bring along some exchange of thought. One other thing I have to admit was that several years ago I had a huge chip on my shoulder about negative guys. The irony was that I’ve hardly had any negative experiences. I’d absorb me resentment passively through the stories friends told me.
More so too, the things I saw online also bothered me. I’d think “Why am I dealing with these kinds of guys?” When really my option was to do just like I did with the TV, change the channel if I didn’t like what I saw.
The most recent experience for me, although not a negative one in a classical sense, but one I was not used to dealing with for awhile was when I was approached by a younger guy to meet.
Finally we started to talk to meet, even though I had been apprehensive. Then suddenly he writes me to tell me he’s nervous about the HIV thing, but would still like to meet. “We didn’t have to do anything the first time.”
But you know, I get tired of having to be the support person for the guy who’s afraid to be with me. Unless I was madly in love, or crazy attracted or had some kind of investment in the guy that was going to last longer than an hour, I’d take the time, and risk, as well as through in some patients.
When this happens, I feel like a contagion who has to know counsel someone who is afraid to be with me. After twenty years, I’m not so sure in this day and age I feel like it so much more. In the 80s, and part of the 90s, it was one thing, but now, I’m not so sure.
However, I will never say never, so too speak.
On a footnote all my relationships, except for one, have been with negative guys. Being positive was the least of the list of issues we had to deal with, and that’s what I’m used to.
Wednesday, October 8th, 2008
Most likely the first place to start is why do I feel the need to put my face out into the public as an HIV-positive man, and consequently joining this campaign on HIV prevention and stigma.
Ever since the beginning of this epidemic, due to the stigma, people hid their status. At the time it was understandable, people were afraid to work with us, shake our hands, or even let us play with their kids. The acting of eating off of someone’s dinner plate was enough to cause angst.
Over time, as people became educated, stigma and discrimination morphed into other forms. Generally speaking those who were HIV negative felt free to express their opinions while those who were positive were generally accepted to just stay in the shadows of the sidelines. Individual acts of activism were required on the part of HIV positive men to go public and challenge stigma and discrimination within and outside our community.
The Gay Men’s HIV Prevention campaign provides a forum in which we can create a dialogue between the great sero-divide, which has been widening over the years. When I use the term sero, I mean HIV status, such as serostatus is HIV status, for example.
I have personally found that respectful discussion of the issues that affect us all can facilitate a greater understanding and empathy on both sides, especially for me. We do not spend enough time getting to know each other, and quickly make judgments based on limited experience.
Having said all of this, I invite everyone to join me for a conversation during this campaign. We have a lot to share with one another. What are your issues? Is it disclosure? Is it that you’ve met someone and really like them, found out he is positive and feel anxious, but want to still see him? Is it that you’ve had so much loss in your life that the thought of dating someone positive brings back too much baggage and you can’t do it?
Personally I look forward to your discussions. This is the first time I’ve really had a forum, other than my blog, to exchange ideas. This is a great opportunity to bridge the sero-divide.