Posts Tagged ‘disclosure’
Monday, January 12th, 2009
It’s time for a new post. My tendency is to post what’s going on personally this journey.
This one is for you Elliot who wishes for more in your face stuff. This time it was also in my families face, in a very dark humour way.
Let me provide the context that even though I have been very out in the media, it was still a time where I could separate that life somewhat. I had pretty much assumed because of that life, everyone most likely knew back in Winnipeg. However many live outside of Manitoba.
The physical distance has allowed me to compartmentalize, however, there is no such thing as creating firewalls in the new age of technology and the secondary virtual life.
Last spring I went to surprise my grandmother for her 90th birthday. The event turned out to be a family reunion. The result of that was that many relatives had sought me out on Facebook.
Now I’ve had an online presence since 1997, long before the family came a lot. I felt a bit of resentment that I’d have to change my profile because they were invading my space. I kept the “men seeking men” however there is not reference to my status on it, and I tried to block out family from my full profile.
To make a long story short, I made up a group, as Kathy Griffin is my hero, for a million sign ups for me to meet her. The story about how this came to be is in the group posting. It’s quite sick, humour wise, as mine is always dark. Sign up if you feel behooved.
Stupid me I think it’s not going to get to anyone I do not invite. That got shattered with three family members signing up to this. Now two already knew. One however didn’t.
Facebook really is like living in a virtual fishbowl. There is no way to really keep any activity private unless you block everything. Even still if someone joins the group it’s announced to all their friends.
Three relatives were enough to make this go viral.
Finally at the age of 43, I am completely out about everything to everyone in my life.
It feels good to not care anymore.
I discussed on the blog that why should I make a big deal out of being positive. How do we de-stigmatize HIV if we constantly make a big deal out of it? Was I supposed to have an intervention-like gathering to deliver the news.
That’s just not my style.
I can’t think of a bigger in your face way to let the news out, intentional or not.
Tuesday, December 16th, 2008
This must be the season of lurking. My last post and comments where meant to highlight that there are two sides of the coin of having to protect oneself, and how tired I get of negative guys only talking about themselves, and how they if they could only stay away from “us” or at least if we only disclosed to them so they could avoid “us” then it would be such a perfect world.
I jokingly said maybe we need a system by which to protect ourselves that included a public notary on for on the spot encounters at the bathhouse.
Jeeez, now would they complainers be willing to give their real and full names on a document to be held accountable for their behaviour, I doubt not.
Nonetheless, I’m not suggesting, recommending, nor endorsing not disclosing. In these posts I’m not telling anyone about anything they have to or should do. You’re all adults out there, and everyone has to find their way, and often that is fluid.
And let’s face it, if someone rejects me because he is sero-sorting, really in the end, he will potentially screw himself far more than his desire to screw anyone else. My hurt feelings will not compare to the heightened risks, or the embarrassment of bumping into me at the pharmacy.
For me it took a lot of experimenting. Twenty-years later I’m still not sure I have all the answers, and how I’d proceed if I were living a life that wasn’t public.
I’ll recount a fleeting thought process I took note of yesterday.
At the YMCA yesterday, I took a soak after my yoga class. I always try to sit with my back in front of the jet on the side facing that opposite wall of the space so I can watch the semi-and naked guys walk past.
One guy walked by, quite cute actually. And let me preface this by I’ve never picked up anyone at the Y, and I knew that this was not about to change.
This fellow looks over my way and heads into the showers. I was feeling as if I had enough of the whirlpool but held off heading out as I didn’t want to appear as if I were chasing the guy.
A few moments passed and he reappeared and came into the whirlpool. I sat there for a few minutes, and ran the movie in my head of us actually talking etc. Then I thought, “Ah I can’t deal with energy of disclosure.” And for me disclosure is not just about HIV status, although that would be the most immediate one. The others I leave for dating situations.
Even so, I ran that little situational featurette in my head, and realized how much I hate that process and it’s far better to either 1) pick up gays at the ACT reception area - this is what happened with the last guy I saw, or 2) stick to those I meet in person or via internet profiles.
Thursday, December 11th, 2008
One of the reasons I get a bit burned out on the stigma front is a bit like when I worked for a very popular cosmetics company. Every time, all dressed in black, wearing one of their product campaign necklaces, I’d be stopped relentlessly on my breaks by sales women who exclaimed they used this companies products and started naming their favorite shades.
At times the stigma campaign can be like this. My time is normally spent immersing myself in the positive aspects life has to offer. Suddenly with World AIDS Day upon us, and just like Christmas, New Years Eve, and Pride, I just want to either stay in bed with the sheets over my head, or find a nice sunny get away and spend my days at a beach.
It was in this context, combined with the onset of a good dose of winter depression that I was getting a bit tired of it all. With WAD over, I feel much better. Now I can focus on avoiding other things.
While brunching last Sunday the stigma campaign came up by this really how beefy positive man I know. He started to explain that he discloses to every partner at the baths.
To be honest I was surprised he did that, as I don’t think I’ve ever had one person disclose to me at the baths.
Come to think of it, I’ve never ever had someone disclose to me first before I took the leap and told him no matter the circumstances.
To my even greater surprise I learned invariably every time he is rejected. Here’s this really hot guy telling me he’s always getting rejected. I felt like I did when I first watched the movie Jeffery when the main character was all in turmoil because this extremely hot man was positive and couldn’t deal with it.
Just another example of what goes on in people’s lives that we are not aware of.
Saturday, November 15th, 2008
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.
Tuesday, November 11th, 2008
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?
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.