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I would like to pick up on some of the interesting points and questions made in response to my last video and blog posting.
Some points raised spoke to the possible stigma created by the use of my language such as my “intention to remain HIV negative” and the discussion about my negative status at all. One comment looked at changing the language of gay men generally around the topic of status altogether, as our HIV Negativity may be unknown or assumed. Others said that prevention efforts and messages are often inherently stigmatizing to those living with HIV. I’d be really interested to know what others may think.
Given what’s been said, what are appropriate ways HIV negative men can talk about status and wanting to remain HIV negative, without contributing to stigma?
Tags: HIV-negative, prevention, status, stigma
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Wow, these are some really great conversations and a good questions David. I agree with Bob’s earlier comments about the importance of having David as a negative person on this site. I also want to acknowledge that I’ve been in conversations where someone has made an over the top obvious comment that tells everyone that they’re straight or that they’re negative. Those kinds of conversations can definitely add to stigma and be really inappropriate. The aim here is to involve the full community of gay men in a discussion about how stigma is impacting our lives, our communities and our sexual health. We are a community but we also are individuals with very different backgrounds, beliefs etc. To really engage in this discussion and understand we need people who identify as poz and some who identify as neg to help us along. In many of the meetings where we were developing this campaign, I learned a great deal about the negative men at the table and how their desire to support us as poz guys as well as their obvious desire (and ours for them) to stay negative can be impacted by stigma in our community.
David’s comment about people’s assumptions that he’s positive are important as well. He actually experiences some of the same stigma that we do even though he’s negative. He may not understand all of the things we experience, but he’s being very courageous to be involved in this work and help us understand each other as a community. Ultimately, wouldn’t it be nice for David and I to be out of jobs because AIDS Service Organizations are no longer needed and as a community, we don’t need labels of poz and neg because we’re to a point where it just doesn’t matter.
October 27, 2008 06:25 PM
Rodger and Ray:
I agree. I have been diagnosing myself with HIV infections since I was 18. Every time it felt like it was completely true. That is why I think neg guys can understand perfectly well what stigma is. We all have at least role played with great anguish an HIV infection
October 27, 2008 07:54 AM
“I can’t tell you how many HIV tests I’ve sat through freaking out because I took some cum in my mouth or even took a bigger risk. It takes it’s toll, you know.”
I think Ray’s point is an important one and it also shows what we have in common. Both neg and poz guys have taken risks and have fears and concerns about HIV transmission. We are not so different after all.
October 26, 2008 09:01 AM
What’s the point anonymous of an HIV stigma campaign for HIV positive people? Isn’t the point to try to get HIV negative guys to better understand what HIV positive guys are dealing with and reduce the stigma? I’m glad there are HIV negative guys speaking out about this issue. I’m HIV negative, and it’s not easy for us either when it comes to HIV. I can’t tell you how many HIV tests I’ve sat through freaking out because I took some cum in my mouth or even took a bigger risk. It takes it’s toll, you know.
October 24, 2008 07:13 AM
Eremir. Ha. I’m glad I’m not dating anymore. Seems to me on-line profiles have both made it much simpler and muddied the waters horribly.
Your answer to my question is very thoughful. Basically you’ve said that neg guys tend to avoid dating poz guys for a range of reasons and the fear of becoming infected is just one of them. We can work on that perception perhaps, through education. The other reaons are neg guys’ emotional responses though and thus trickier to address. Some of them seem valid. Not everyone wants to be a caregiver, even in its loosest sense.
Do all those things add up to stigma, though? Murray has talked about his concerns with HIV- UB2 - and so has Brian. I hope you dont think it’s a cop-out if I say I just can’t decide.
I’m hear to learn, just like everybody else.
October 23, 2008 11:12 PM
Bob:
It would be a good experiment indeed. In fact I will do it in a week or so. I will be travelling so I will not have time to log in on dating sites, but when I come back I will remove the HIV+ disclaimer (ha!) from my profile and see what happens.
Your question is complicated. I guess the “intellectual”and civic answer would be that they are making valid choices. Maybe if someone discloses on their profile that they have hepatitis, or bipolar-ism, or lupus, then that person won’t get many replies either. We live on pragmatic times and nobody wants to get involved with people with problems. People want happy lives, like the live of the people that lives on the Cleanex comercials or the Pantene ones (http://www.youtube.com/watch?v=_Sa2v1qJrhQ), not complicated ones. Clean, streamlined lives. Some people even say they are looking for “value added”. I swear I am not joking. I read it. And I chocked. Those are the days we are living. So yes, if they are not out of the “norm”, then they are making valid choices. Who wants a sick guy with their Cheerios?
Also, they don’t want to risk their health. They might be phobic about it. They might be the ones that read greedily about the case of the woman that got infected of HIV because of a kiss and nod pensively saying “I knew it, I knew it, this doctors are idiots” ignoring the fact that the woman had just had oral surgery the same very day. They don’t want to risk anything. They want to live paranoically safely. It is kind of ignorant, but I guess I can understand the phobia.
Or maybe they are so strict that they think that the fact I have HIV means I did baaaaaad things and they don’t want to be involved with baaaad people. Well, I can understand. That is valid also. Being judgmental is also baaaaaad (the straw on the eye of your brother), but I can understand. They want to find the perfect match.
But my “emotional” side is more old fashioned. I was madly in love with a guy that actually had lupus. I knew he had it. I knew his live was going to get complicated in a few months. I still loved him as a human been and did not care about the complications. At the end, I discovered he was actually healthy and faking the whole thing up, but that is another story, for when I want to amuse people with how innocent I can be.
I guess I expect people to be like that (like I was not like the liar), to believe in that kind of values. And I guess that is why I disclosed my status on my profile. I am also picky. Very picky. I usually feel attracted by human beens with human been values. With errors and mistakes and scars, and I want them to show them to me and explain how they got them. It is their history. If you don’t have scars, then you either are so crazy that stay at home all the time surrounded by cotton balls or you are a liar (see, I learn after all). But also want them to believe in goodness, politeness and compassion. And I want them to know my belly might grow and my cheeks might sunk and I might spend more time than I want on the toilet, but I will still be the same person. And if they disagree, then they can continue dreaming with their plastic Ken.
The profile is there to find a person with which I could start a friendship, or a date, whit whom I could feel comfortable. That person is not the Pantene self indulgent one or the phobic or the inmaculated. So, as Brian said on one of his comments, those get filtered out automatically. I don’t care if they are cute, they would had make me be sad and annoyed and angry, so good thing they did not talk to me.
October 23, 2008 09:17 PM
Eremir. As long as you keep raising good points, I’ll keep responding.
You say “since I updated my online profiles saying I am positive, nobody talks to me”. That sets of alarm bells for me. It fact it would be interesting to conduct a little experiment. Two identical profiles, except one inficates you’re HIV-, one HIV+. Then compare the results. I think I can guess which one would get the most reponses.
Now is that evidence of stigma, or is that a case of neg guys making perfectly valid choices, based on the kind of characteristics they look for in a partner? What’s your take on that?
October 23, 2008 08:17 PM
Bob:
You might be right. In fact, when I think about it, I am the one that has the least to say about HIV stigma. I have not had an active experience of it myself. I say active because I have it passively: since I updated my online profiles (oh, they are not that many…) saying I am positive, nobody talks to me. But it might be they don’t like my picture or my idea of a date, so I cannot say I have experienced stigma at all. In fact, the few people to whom I have disclosed it (3 in total), friends or dates, have been extremely supportive. So I am not the one entitled to talk about stigma.
It might be an example of what you and Rodger say, it might be one of those things you have to experience to actually understand.
And I agree with you. Testing HIV+ is a life changing experience. Sometimes (I know I am pushing it) even for better. I care now for my health more than before and I understand other peoples problems and errors from a more personal and compassionate point of view.
When I was negative I tried to be very careful not to offend anyone because of their status. But I agree with you I did not know how it feels to be on the other side. And yes, I do struggle. I guess you could guess for the length of my answers that I do struggle, sometimes too much : ) By the way, I apologize for my typos. English is not my mother tongue.
Thank you very much for this dialog. Much necessary and much healing.
October 23, 2008 07:52 PM
Eremir. Good points. Sounds, though, like there is a split between a) contributors who think neg guys undestand the stigma experienced by poz guys and b) those who believe neg guys usually just don’t get it. I’m tending to think that - mostly - they don’t get it. But I think we need to hear from more neg gays to validate that view - or prove it wrong.
You say everybody understands stigma and I think you’re absolutely right. You’ve given a good example. But I wonder whether HIV-related stigma is a different kettle of fish?
What hasn’t been said here is that all of us poz guys were once neg guys (unless we acquired the virus at birth, which is highly unlikely) So we should know automatically how neg guys think, right? But I’d suggest that HIV diagnosis is such a life-changing experience that our mindset immediately takes a quantum leap, and we suddenly think very differently about some key issues. It’s very hard, I think, for HIV not to define who we are AND HOW WE THINK, even though we struggle against that. Or I do anyway. Sometimes I succeed , sometimes not.
How about you? (Life’s complicated, isn’t it?)
October 23, 2008 06:02 PM
Hi Bob:
I personally think that neg guys can understand what stigma is. I agree that maybe they have not think on it as a phenomenon that is actually happening and that has to be fought. But I think anyone can understand what stigma is, because even the purest person can be stigmatized by other reasons.
I work for example, with a very intelligent person that unfortunately sweats too much and with a peculiar smell. It is not his fault, it is genetic but the truth is he smells very bad, in a very peculiar way, and it is very evident. He tries to fight it by spraying perfume, too much of it, which only makes it worst.
I think very often when I notice it (he works beside me) that it must be very sad for him to be sure that everywhere he goes people are gonna gossip and make jokes about his smell. It does not mater what he said, who nice he is, how intelligent he is, he will always be the stinky one. That is a stigma he will carry forever.
I think he would understand our stigma very well, and in fact, he is very careful when he speaks about other people, and tries not to judge. I thin he would understand the HIV stigma even when he does not know the side effects of pills, or the effect of sadness and stress on the CD4 count or the complex feelings and thoughts we have to go through.
Now, is it on his mind? Does he know it exists? Does he think about it? Probably not, the same way you guys probably don’t think about his stigma. Anyone would say “Ugh, he reeks!” and giggle, unless you know is a sad genetic predisposition.
That is why I love this campaign so much. Because it would make people realize that HIV stigma happens and would make them think. It will bring it in front of their eyes.
And now I am off to do laundry, or I will be stigmatized for mundane reasons ; )
October 23, 2008 04:40 PM
Rodger. I think your’e absolutely right. Of all the things many neg guys don’t quite get about us, the pervasiveness of stigma and its impact on us as poz guys is probably right up there. But we learn a lot of this from the lived experience, right, so how would negs know unless we ourselves talk to them about it?
You implied though that we need to hear directly from neg guys rather than trying to guess what they think, or we risk falling in to the “assumptions trap”. We’ve learned elewhere that unspoken assumptions about each other don’t always jive with reality. So yep, let’s hear from the neg guys, to set us straight.
Well not straight, exactly, but you know what I mean . . .
October 23, 2008 02:55 PM
“Yay we agree! Your view of why we are doing this - and the role of negative guys as a target audience - is spot on with mine here.”
Oh yeah, believe me, I think guys like David and Nik and Vijay totally rock and I want more guys in our community to have those attitudes. That makes me feel… less vulnerable to be honest. There is a lot of scorn and blame and real anger among some neg guys directed toward poz folks. It hurts and it isn’t fair.
“It’s been suggested that most neg guys dont really understand poz guys issues. What do you think?”
Some aspects I think you do have to experience it to know. I was pretty caring and sensitive and aware as a neg guy but I didn’t understand the way I do now. I think the weight of stigma is one of those things. It’s visceral. I’ve talked to some people who are pretty flippant about expecting poz people to disclose and I think those people really don’t get it.
October 23, 2008 01:46 PM
Eremir. Hi again. Good on you for reminding us about not generalizing. That’s really another word for stereotyping, I for one try hard to avoid it, but I imagine I’ve slipped up once in while, including perhapos here . .
I’m glad we’re getting around to the topic of perceptions of neg guys though, because that’s a major focus of this campaign. It’s been suggested that most neg guys dont really understand poz guys issues. What do you think?
October 23, 2008 01:31 PM
Rodger. Yay we agree! Your view of why we are doing this - and the role of negative guys as a target audience - is spot on with mine here. I also very much like the way you couch the need for disclosure - or not - within a framework of decisions about safety.
I hear it said some gay men think with their dicks. I’m getting the impression you use your brain.
October 23, 2008 12:31 PM
I think David’s comment about his intention to remain HIV negative is completely valid. Let’s not confuse things. We all would prefer to have staid negative. We look forward to it and we will go for it as soon as science finds out how to do it. Who wants to keep the diarrhea, the nausea, the fat changes, the lack of energy, the immune fragility, and all the consequences HIV brings?
Stigma cannot be fought with silence and euphemisms, but with open discussion. Things are the way they are. He wants to stay negative. Good for him. All my support. Way to go. Does that mean he thinks I am less of a person because I did not? Not at all.
And I also disagree with generalizations like: all negative guys this or that, or all straight guys this or that. We are all humans. Ghetto culture brings rarified environments and those environments bring very crazy ideas of what the real world is.
Positive gay guys are not blessed suddenly by some kind of understanding of the whole thing. Suffering something does not mean you understand all its consequences. Some gay guys disclose because they think it is fair, some don’t because they think it is their right, and play safe; some don’t disclose and play unsafe because they are just too numb to get it; some do it on purpose because they are sick or full of hatred. We have all colours, like in the pride flag.
On the other hand, some negative guys get it completely, with brain and heart, like my best friend, who goes with me to every doctor’s appointment and know more about HIV than myself, just to be able to help me make the best decisions. Would he get what stigma is? Oh yes.
October 23, 2008 11:54 AM
>>what are appropriate ways HIV negative men can talk about status and wanting to remain HIV negative, without contributing to stigma?
I guess my advice would be not to ask for disclosure or self-disclose negative status before sex unless the other person discloses as poz first, always be very careful around anal play and condom use no matter who you are with, never ask someone’s status *after* sex, and with all friends and sex partners, whenever it makes sense, say things in general conversation that indicate that you are knowledgeable about HIV and, if it’s true, that there are many people you know and care about who are poz.
October 23, 2008 11:49 AM
I find myself agreeing and disagreeing with Anonymous. He’s right most neg guys have no concept of what we go through. But how would they?
To me the ideal goal of this site would be to open up the thinking of some neg guys (not the great ones who are moderators on this site) so they can understand. A lot of people experience discrimination that I don’t experience myself, and I may never 100 percent “get it” then it comes to their issues, but I definitely try. And I want neg guys to make that same effort when it comes to me. I think this site could be a huge tool to help with that. I really hope neg guys are out there reading and thinking.
October 22, 2008 09:54 PM
Hi Anonymnous. As a poz guy myself, I can see where you are coming from - there is a need for a forum something like this for poz guys to find support, information and commonality. (If you know of a good one, feel free to share it here.) But as a poz guy I’m also glad that David is on the site. Mostly poz guys were instrumental in getting this show on the road, and the presence of allies like David is helpful in presenting a wider perspecticve of the issues affecting gay men. So peronally, as a facilitator here, I’m more than happy to work alongside him.
The messaging on this site is subtle, but it’s actaualy designed with negatve guys in mind. At the same time, its clear that it has relevance to poz guys too - and that’s good.. I think its a really good chance to understand each other better.
Does that explnation help? I’m hoping it does. Stick around, will ya?.
October 22, 2008 09:04 PM
i dont think you can. hiv negative guys just dont get what kind of things we deal with as positive people. i sort of get why there are negative guys here, but i think this should have been more for positive people.