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Author Topic: The Elephant in the Room  (Read 4167 times)

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Offline Joe K

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The Elephant in the Room
« on: September 21, 2008, 09:31:58 PM »
My name is Joe and I have been living with HIV for 24 years.  I used to be a regular around here, until my life forced a few detours, but now I am back and so I thought I would just jump right in once again.

As I read the forums, I keep noticing that we seem to ignore the elephant in the room, while talking about so many issues that affect our lives.  The elephant to which I refer is the Stigma that surrounds HIV and AIDS.  It permeates our lives, I see its effect in so many posts, and so I would like to share some of my thoughts, hopefully to provoke some insight into this scourge.

I became poz in 1985, when we knew almost nothing about HIV and the stigma surrounding it was frequent and brutal.  It breaks my heart to recall my friends cast from their homes and families, simply because they became poz.  The stigma grew and as we discovered more about HIV, say transmission routes, then the more stigmatized our community became.  Numerous institutes used propaganda to promote the idea that since only disgusting gays or drug users were getting the disease, then “Who cares”.  In addition, for much of the religious crowd, gays were a biblical abomination and AIDS was Gods answer as a divine retribution.

These tenants of the HIV stigma resulted in gross inaction by the American government and sadly, we will never know what we lost, during those years when our government so utterly failed us.  HIV Stigma made it far too easy for much of society to disregard us and ignore us and so we were.

If not for the AIDS activists, many of whom are in these very forums, many more of us would be dead, because nobody was in any hurry to do anything to help us.  One of the only reasons that we have current HIV research and treatment is because of the efforts by thousands of pozzies and over the decades, the HIV community has made great strides in diffusing the stigma of HIV.  Yet it still exists and I believe we need to become proactive again in fighting that stigma, otherwise we risk repeating the mistakes of our history.

I believe that far too much stigma surround HIV exists and as I read the responses I can see and feel the stigma that lurks below the surface and I do not know what to do about it.  I know that for me, there are times where I feel uneasy about aspects regarding my life, not because I believe the stigma, but because it has left an imprint on my psyche that I do not think I will ever be able to fully erase.  I mean really, how you can grow up with all the negative images surrounding HIV and not change on some subconscious level.  I know in my heart that there is nothing wrong with me, but sometimes I have my doubts and not because of reality, but rather because of stigma.

So many of us have grown up in an atmosphere where HIV/AIDS is the only disease that is truly “EVIL”.  Think about it.  Would you ever berate someone for having lung cancer because they smoked?  Would you ask a skin cancer sufferer why they did not use better sun screening?  Or ask someone in a wheelchair, what they did to cause their disability?  Of course not, but not so for HIV.  We judge and are judged all the time by the method by which we became infected.

Some religions tell society that gays deserve HIV because we are in violation of their Gods laws, remember Sodom and Gomorrah.  Society then tells the entire HIV community that some of their lives, cost just too much, as witnessed by patients dying in states with waiting lists for their ADAP programs.  The people who get HIV are not a powerful voting bloc, we do not have unlimited resources and so I believe we are of lesser value to the American society.

Yet, we continue to stigmatize our very own, every day.  The post I referenced earlier had a few responses, which contained some underlying judgments caused by all the damage that the propaganda surrounding HIV has produced over the past decades.  I mean, how many people truly believe that oral transmission of HIV is impossible, otherwise, why would they insist that people who have been infected with HIV (through that transmission route), MUST have had some other risk that they just will not admit too.  What I see is not a difference of opinion, but a subtle feeling that too many of us subconsciously judge others and that there are degrees of HIV infection.  I know some people believe that how you got HIV really matters and so a blowjob is much less evil than anal intercourse.  Again, we are judging our own.  Talk about stigma.

I also believe there are levels of stigma.  The first level is for those infected through say birth, needle stick, or some other NON-sexual related method.  Usually, society views these poor souls as victims and rightfully deserving of sympathy, which they are.

The second level contains IV-drug users, victims of rape or intentional infection.  However, even those victims are treated differently, depending upon the niche that each segment represents.  Drug users do not get a lot of sympathy, whereas victims of rape do.  Certainly, we do not have to demean anyone who becomes poz, yet we continue to do so.

The last level is for those amongst us who are truly evil.  You know who you are, because society has been telling you how disgusting you are for decades.  Stigma wants to punish you for your sinful ways.  Stigma insists that we forget that HIV infection is a biological event, period.  Stigma refuses to acknowledge that nobody deserves HIV infection.  Stigma insists that we separate the “good” from the “evil” infections and we need to start pushing back.

Please understand that I am not judging nor accusing anyone of anything.  I am just providing a topic for discussion.  I admit that sometimes I react because of stigma, and while I am not proud of it, it does not come from malice, but rather from rote memory.  I think they used to call it brainwashing, but either way, we, as the HIV community, are all that we have and if we do not look out for each other, well history tells us quite clearly that few others will.

I would like to see us diminish the effect of stigma surrounding HIV and I am wondering what your thoughts may be.

Offline Jeff64

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Re: The Elephant in the Room
« Reply #1 on: September 21, 2008, 09:50:30 PM »
Nice post, Joe!

I am tired of the Sarah Palins of the world telling me I am evil and that god hates me.

God loves me and my friends love me. I have learned to just ignore the critics...let them live in their fake religious world where judgment is the norm.

Offline Mike89406

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Re: The Elephant in the Room
« Reply #2 on: September 21, 2008, 11:18:25 PM »
I'm active duty and was diagnosed POZ in 2002 with 12 years in the military. The heath care in the military regarding POZ's is top notch as we have to go to Infectious Disease doctors in my case I go to San Diego Medical Center which has its own ID wing  ,however back to the stigma thing. The stigma I currently face in the military is unbelievable I've heard some early 80's beliefs on HIV as I'm sure others here have faced . In fact I don't disclose my status to workers because for one they dont need to know, and secondly with the stigma that exists I'm afraid that I would be treated unfairly and other things I don't want to experience not to mention fear of the unknown. Having said all of that this is not to say all military members think the same way.

Luckily I'm protected by the privacy act and the only people that need to know are certain health care workers, and my Commanding Officer. If anyone ever finds out my status and tells others about me they can be prosecuted however I don't ever want to ever have to do that unless I absolutely have to.

So whats my point? I feel like I have to face a double stigma (military, and society) right now so far though I haven't had any major problems in 6-7 years POZ there have been times when even I felt I knew more about my condition than general doctors military and civil ansd a few were afraid to work with me . However when I retire from the Navy in 3 1/2 years and will possibly be working in the civil sector I hope I don't have problems getting hired by then but then I wonder what are limitations on disclosing my status to employers as I hope I don't have to.

Mike
« Last Edit: September 21, 2008, 11:35:58 PM by Mike89406 »

Offline Imnew2this

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Re: The Elephant in the Room
« Reply #3 on: September 21, 2008, 11:21:12 PM »
Great post, Joe, and thanks for reminding us how the world can really be.  I believe that we'll never get a handle on the detection and spread of this disease unless the stigma is tackled first.  Unfortunately I'm as guilty as anyone can be about not telling others of my path and experience with this illness.  I'm thankful for those are able and have been able to do so.  But one thing I do know is that God did not give me this illness.  In fact, without Him, I don't think I could have ever made it through the last year.

Offline Bucko

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Re: The Elephant in the Room
« Reply #4 on: September 21, 2008, 11:28:26 PM »
It's great to see you posting again, Joe. I've heard through the grapevine that you made it to Canada, which made me very happy for you indeed.

I'll need to chew on the stigma question for a bit, and will add to this thread when I have some coherent thoughts about it.

I hope I don't have problems getting hired by then but then I wonder what are limitations on disclosing my status to employers as I hope I don't have to.

Mike-
Disclosure at work is absolutely on a need-to-know basis. If and when you need any accommodation, your supervisor will need to be told. Otherwise it's none of anyone's business.

Under no circumstances would I suggest you disclose to a potential employer before being hired.


Blessed with brains, talent and gorgeous tits.

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Blathering on AIDSmeds since 2005, provocative from birth

Offline Joe K

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Re: The Elephant in the Room
« Reply #5 on: September 22, 2008, 01:31:46 AM »
Mike, I understand your problem with HIV and Military stigma, but I propose that without the first, there would be little of the latter.  If you had just about any other disease, you would have the support of almost everyone around you.  But you do not.  You have HIV and all that baggage that that entails and that stigma marks you with an invisible scarlet letter, that I doubt you will ever erase, until you leave the military.  How truly sad that lies and propaganda have been so successful at destroying or diminishing so many lives.  I wish you luck in making it through to retirement and then maybe you will consider becoming an advocate for others in the military.

Iamnew2this, yes it is awful how reality can be sometimes, but it does not have to be, which I have discovered after moving to Montreal and having lived here for almost a year.  Canada is worlds away from America in her views regarding HIV, STDs, gays and many other things.  I'll be writing about that in other posts.

And Bucko, so good to see that you are doing well.  I was a little worried when you dropped off the radar but the wicked one assured me that you were doing fine.  Yes, we did make it to Montreal and it is the best thing I have ever done for myself.  I should have done this decades ago, but better late than never.  I look forward to hearing your thoughts as I really enjoy your posts and the thoughts you bring to the table.

Offline lucas clay

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Re: The Elephant in the Room
« Reply #6 on: September 22, 2008, 04:25:16 AM »
I do think that when people know you are positive it seems to change there perception of you.
Even among loved ones, sad to say but it seems to be true in some cases.
Seems like it changes you "in there eyes."
The propaganda about this thing is horrible, it is only a virus
The stigma is just as bad.

                                                Lucas

Offline carousel

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Re: The Elephant in the Room
« Reply #7 on: September 22, 2008, 05:45:51 AM »
Maybe because of where I am and live, I have realised that some of the stigma is how I perceive it rather than the reality.  I know for many it is a huge issue.

At the moment, I doesn't really play an important part of my life.  I'm just getting on with living.

Offline mecch

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Re: The Elephant in the Room
« Reply #8 on: September 22, 2008, 06:06:36 AM »
Big topic.

Would this be the thread to speak about the relationship between stigma and disclosure?

One subtopic that interests me is stigma inside the gay community. Just wondering what I will experience from now on, as I am recently poz.  I had a few bad and a few good experiences as a hiv negative guy with past positive partners' disclosing (or not  ???) to me.  I dunno, seems like an awfully unwieldy topic for a thread.  Possible tangents:

Stigma and crime! - My European country is one that both criminalised some kinds of HIV transmission (including if you transmit in ignorance of your poz status) and then judged that treated and undectable could not be considered "criminal intent" if status is not disclosed (and there is no transmission - e.g. - if there are no accidents and safer sex works then you don't have to disclose).  The messages are so mixed in the private sphere (sex and relationships) and the public (for instance public opinion or courtroom).  I dont know much yet about the topic of criminalization but it seems that it includes both issues of stigma being applied to poz people, yet also moral responsibility (poz people should not intentionally infect others, and if some pathological poz people do that, it should be a crime?  Is this the case in ANY other chronic transmissible illness??).

Stigma and risk and serosorting - I figured maybe it'll be easier on me if I date poz guys from now on.  So now I'm talking to more poz guys in my country and most of them told me in the poz and TREATED community safer sex is the exception -- that scares the bejesus out of me cause of all the internal stigma and fears i've built up over 25 years.  Not to mention maybe its a bad idea healthwise - seems so technical.  If it is technically a bad idea (other stds, superinfection, etc.) then are the poz guys who are not having safe sex with each other showing some sort of internalised stigma manifesting in disrespect to each other or themselves? Seems to be a sort of shoddy "lite" pyschoanalzing of poz people. (By the way, I'm not in Berlin, but that is an example of a city where the poz community is both highly treated and highly non-adherent to safer sex...)

On a optimistic note:  re: my personal history with disclosure in my long love life - I do believe that HIV poz stigma has RADICALLY fallen in the gay world since HAART because before HAART i did have steady lovers and even a boyfriend lie to me about being positive and after HAART, no boyfriend at least has done that.  

Stigma MUST be involved in the current state of affairs however where guys don't disclose right away and even fuck a few times (safer sex between unknown status partners) before disclosing, on the grounds that safer sex covers the moral and technical issues - and dating and fucking a few times (a few weeks??) gives some advantages.  

Personally, kudos to all those POZ men who disclose to every sexual partner before screwing.  I think I want to do that too, but that would mean I'll never have anonymous sex again - at a sexclub or park or beach, etc.  I don't think anyone wants to have that info exchange during an anonymous sex encounter.  Any Swedish people in this forum? Correct me if I'm wrong but I think in that country the law is a POZ person must disclose to every partner beforehand, no matter the circumstances.  

So if I want to be a POZ who always discloses, that means I have to date a lot less people, and not disclose until I trust someone's discretion to keep my status private even if he rejects me, because otherwise in my small region I'll soon be completely "disclosed" as a poz guy and is that what I want??? My own stigma and community stigma combined, hmmm.

Best to all.




 
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Buckmark

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Re: The Elephant in the Room
« Reply #9 on: September 22, 2008, 12:14:42 PM »
Hi Joe,

Glad to see that you are back participating in the forums.  I do think that stigma is an important topic, as it is alive and well.  I'm not so sure it is an "elephant in the room" however.  In some ways I think that every post here about disclosure is (indirectly) a discussion about stigma.  And Jeromy (pozguy75) has been active on the topic of stigma:

http://forums.poz.com/index.php?topic=18797.0

Personally, I think the stigma surrounding HIV is because it reminds our society of two things they would rather not deal with:  gays and sex.  There are of course other STDs which I think have a certain level of stigma of their own (folks with HSV or HCV might want to chime in here).  But I don't think it generally approaches the level of stigma from HIV (because, again, HIV is associated with gays).  I often wonder if straight folks with HIV face a lot of stigma because others have some underlying assumption that they really must be gay.

I think our society's puritanical views toward sex compound the problem.  The prevailing view that sex is taboo (even though we know everyone does it), and that if you catch an STD then you are getting what you deserve.  And I think HIV is arguably viewed to be the "worst" STD one can be infected with, because of its association with the gay community.  Again, I think this association between the two often causes people to react strongly, and negatively, towards folks with HIV.

Your point about different levels of HIV stigma is something I agree with.  There are "acceptable" ways to contract HIV, and "unacceptable" ways to contract it.  Still, in the end, you have HIV no matter how you contracted it.

Stigma is also flourishing within the gay community.  I think the topic I started on ignorance in personal ads is, at its heart, a discussion of stigma:

http://forums.poz.com/index.php?topic=22826.0

A lot of the problems we discuss here on the forums stem from stigma.

So how do we change society's view of of those of us with HIV?  I honestly don't know.  It may only evolve over time, just like society is slowing changing to become more accepting of gays.

Regards,

Henry
"Life in Lubbock, Texas, taught me two things:
     One is that God loves you and you're going to burn in hell.
     The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love."
- Butch Hancock, Musician, The Flatlanders

Offline pozniceguy

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Re: The Elephant in the Room
« Reply #10 on: September 22, 2008, 12:51:46 PM »
Very thoughtful post Henry...there is no single "way"  to erase stigma......the basis for it is too widely dispersed..yes it has been mostly applied to the gay community but as the whole African scenario unfolds and gets the publicity around the world the idea that  the HIV is a "gay" problem will diminish....
People always discriminate  ( a severe form of stigma) for so many reasons that just beating on the HIV issue would would be extremely unlikely..
Our Jan has one of the best approaches as she travels and is supported by a major group in New Zealand
..her presentation of the subject is a super message..the effects have yet to be  measured...
Great subject..love the discussion...lets hear from more people...

Nick
remember the good times...honor the past but don't live there
Le stelle la notte sono grandie luminose, nel cuore profondo del Texas

Offline Ann

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Re: The Elephant in the Room
« Reply #11 on: September 22, 2008, 01:50:38 PM »
I often wonder if straight folks with HIV face a lot of stigma because others have some underlying assumption that they really must be gay. Straight men certainly do - at least the ones I know. I'll hear things like "I didn't know so-and-so was gay." When asked why they think that, they'll say - "well, he's got aids!"

One of my straight mates was repeatedly called a "fucking faggot" and "cocksucker" when he was first outed as poz. He always shrugged it off, mainly I suppose because he's not in the least homophobic himself and didn't really care what people thought about his sexuality. He'd just tell them to get out of his face and go get tested themselves. People don't bother him anymore, they just accept him and his virus.

There's very few in my community who don't know my positive status - or that of my boyfriend's. He got a fair bit of grief in the early days of our diagnosis, but not anymore. Everyone has just accepted it now, and accept that it could just as easily have been them. Rather than re-write why my community knows my hiv status, you can read about it here: http://blogs.poz.com/ann/archives/2007/02/19022007_0151.html That blog entry is also about stigma, so it's very relevant to this thread.

That was written in early 2007, before I started seeing the man I'm with now - the same person from whom I acquired my virus. Since last November (when we got back together) I've been a lot more visible in my community, as I go into the pubs again these days, after not drinking for eight years. I've not had any trouble from anyone and everyone is really happy that my bf and I are back together. I was speaking to a couple friends about this just the other week. I wondered if people were happy to see us together because we were both poz (and therefore not a "threat" to any negative potential partners) but they all said no, people were happy to see us back together because we look so happy and contented with each other. And we are! (http://blogs.poz.com/ann/archives/2008/01/foxtrot_charlie.html)

To repeat what I said in my blog:

I’m lucky. For me, the horrible visions of persecution never materialised. I’ve experienced some negative reactions - nothing life-altering - but I know people who are damned to hell by loved ones and others who have been edged out of jobs, homes and lives. I know people who are so deep within the HIV closet they don’t even dare access the internet. I know people who are barely treading water in a sea of fear.

And I know there but for the grace of the universe go I.

I also know it’s a vicious cycle. Our hiding adds to our own stigma and that is perhaps the most bitter pill of all. We hide because we have to and we have to because we hide. But as we step out of the closet and into the light, people see us for who we really are. We are neighbours, friends and lovers, parents and children. We could be you. Only when people truly understand this will we be free of stigma.


Thanks for the subject, Joe. Stigma is something we can never discuss too much.

Ann
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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

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Offline Sweet_C

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Re: The Elephant in the Room
« Reply #12 on: September 23, 2008, 12:58:34 AM »
This is such a good topic.  I was just recently diagnosed and dealing with the stigma (or perceived stigma) is what I fear more than the effets of the illness itself.  I never really thought about how different the stigma is among different demographic groups.

I am a 34 y/o African American, heterosexual female and I contracted HIV through unprotected sex.  For me, the stigma comes mainly from having a potentially deadly disease that is so misunderstood by most HIV negative people.  It's almost like having leprosy.  People may feel sorry for you, but they still want to  keep far far away from you.  Or at least that's how I'd think they'd react--I've only told one person about my diagnosis so far.

I guess women though are more likely to be seen as victims, even though we catch through the same activity as gay men.  I think the African American community has a lot of work to do with respect to this disease.  Black women are being hit hard by this disease, but I think it is causing a lot of people in the black community to lash out at gay men.  It is good that we are gaining awareness about it, but it's kind of a one step forward, two steps back kind of deal. 

I also think many in the Af Am community are more judgmental about sex in general, and that has been a big source of insecurity for me as I come to terms with this disease.

I wonder how the public at large will view HIV 30 years from now.
Tested positive on September 11, 2008

Offline Finnboy

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Re: The Elephant in the Room
« Reply #13 on: September 23, 2008, 05:19:43 AM »
Maybe because of where I am and live, I have realised that some of the stigma is how I perceive it rather than the reality.  I know for many it is a huge issue.

At the moment, I doesn't really play an important part of my life.  I'm just getting on with living.

Amen to that.

The worst abuse I've ever been subjected to was “you fucking AIDS queers” .. from  someone who didn't even really know that I was queer, let alone poz – and to prove that: it was equally directed at my companions (some of whom were certainly queer, but none of them were poz).

To be honest, I often comment on the fact that I get a lot more abuse/strife/grief from within the poz community - I don't bareback, I don't serosort, I don't automatically think what certain activists tell me to think, I disclose, I readily accept that transmission through oral sex probably does happens, I'd rather focus on the normality of my life, I am happy to integrate, I am content with my lot etc - than I do on the outside.

Most of the unwelcome external intrusions are from people who are surprised that I talk openly about being poz and genuinely want to understand what it is like to live with HIV – a desire which they for some reason think gives them the right to ask the most outrageously personal of questions that they would never otherwise dream of asking in polite conversation – but I am happy to educate about my reality and can live with that as the price I pay for not making a secret of the fact that I am poz. Their perceptions of HIV make it just as awkward for them as it is for me – and, more often than not, I find that they are more than happy to have their perceptions changed.

Whilst I agree with much of what killfoile says about AIDS activists, there is also the flip-side to that. Very many AIDS activists - like many gay, lesbian and feminist activists - are still stuck in the 1980s and need to understand that they don't have an automatic right to  be respected as a voice of today .. if what they are saying isn't also relevant to today's realities. As a gay and a Jew I say exactly the same things to / about the gay and Jewish communities and many of their activists.

There is an old Jewish joke about the elderly Jew walking down the street. He is so absorbed in his own thoughts and troubles that he isn't really aware of the world around him. He is suddenly brought back to reality when walks into a lamppost .. and screams ANTISEMITE!

Offline Iggy

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Re: The Elephant in the Room
« Reply #14 on: September 23, 2008, 07:00:21 AM »
Joe,

Glad to see you back, and I like the post.

I think you hit the nail on the head with the points about the stigma we as poz create and inflict on ourselves and others with HIV. 

Without judging the individual actions that I have witnessed it on this board, it hurts me greatly as I know that the real damage is rarely just the person or post being targeted but all those who read it and the residual effects it has on people's feelings about being poz.

Yet as I just discussed with another, I think it is not a matter of being evil or malicious, but weakness, and in this case I think it is a weakness that is caused mainly by what your post is all about: stigma.

I'm not certain if it is a chicken/egg scenario of which must fall first, the self-induced stigma or that which we feel is initiated by others ...or perhaps neither can fall away unless they are both tackled in tandem.

The only thing I know for certain is that we can not control others actions or feelings which make the theoretical debate a little easier;  the only thing we can do is to be strong and true to ourselves and not fear or accept any notion that we should be shameful of being infected with a virus.


Offline GSOgymrat

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Re: The Elephant in the Room
« Reply #15 on: September 23, 2008, 11:37:11 AM »
the only thing we can do is to be strong and true to ourselves and not fear or accept any notion that we should be shameful of being infected with a virus.

I agree. If you feel damaged or "less than" you are much more vulnerable to the mean and and ignorant people of the world. There is the battle to deal with the disease as a person and the battle to deal with the disease as a society.

Offline Joe K

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Re: The Elephant in the Room
« Reply #16 on: September 23, 2008, 01:25:00 PM »
Lucas, I know that when people find out we are poz it changes their perception of us, but I would submit that it might be more of reflection of their concern because someone they love has a life-threatening illness.  I suspect the reaction we get (assuming it is a positive one) is very similar to what someone would get who had cancer.  However, I believe that some element of stigma is still involved and that is why I believe it is so essential for us pozzies to engage our family and friends, because stigma has made such a mess out of disclosing our status.

Carousel, that is a great attitude to have and it should serve you well.  At some point, we have to stop worrying about certain issues that we cannot control.

Mecch, yes this is a big topic, but no bigger than others, we have discussed and your suggested tangents are very relevant to this subject.  I mean the amount of stigma attached to HIV, coupled with disclosure, especially of a sexual nature, has created a virtual minefield, as we are often forced to choose between personal safety and being honest with prospective sexual partners.  This dilemma translates, for far too many people, into false assumptions about pozzies not being honest about their status to have sex.

That leads directly into your other comments regarding HIV disclosure prior to sex and the criminal aspect that HIV infection can have in many countries.  Stigma is also rampant in terms of HIV and serosorting by everyone, even people who have no personal stake with HIV.  It partially explains the rifts within the poz gay community, with proponents of safer sex butting heads with the bare backing segment. 

Moreover, stigma most certainly influences the sorting that we do in labeling others who are both alike and different from us.

Therefore, while this is a big topic, change comes one person at a time.  I hope that as people read these threads, the thoughts expressed will challenge some of their beliefs and misconceptions.

Henry, excellent post and I totally agree that puritanical sexual views have contributed so much to HIV stigma.  I believe it influences perceptions of the gay community and some religious entities use it as further proof of our deviant nature.  Sadly, the damage does not end there.  Sexual morals in the US have contributed directly to the current sex education programs that stress abstinence only.  Are we to ignore the fact that we are sexual beings?  To believe that virtually everyone can suppress emotional and physical attraction to someone, by simply willing it.  We in the poz community know precisely the dangers of such an approach.

I hope as well, that time will help to soften the stigma of HIV.  You would think that after three decades of HIV that the world would be further along in its understanding.  Sadly, the very diversity that energizes humanity, by which our civilizations flourish, has created such rifts in our treatment of each other.

Nick, I agree that HIV is no longer just a gay problem.  However, it is one thing for the world to recognize and act on the reality of the current HIV crisis, as opposed to the fact that origin, sexual context and primary infection routes will always be rooted in the gay community.

Ann, I know far too well the stigma that poz heterosexuals face, because I dealt with constantly in support groups.  We all know we had to scratch and claw to get the resources we needed to fight HIV and it seems to be that the loudest protests are the only ones heard.  I hated having to tell heteros they could not join the group, regardless of their status, because they were not gay.  Or the look in their eyes when I told them that there were no groups for them.  And even when a group accepted all members, heteros had valid issues with the topics being almost exclusively gay focused.  And those were just some of the problems of the white population.

I grew up in Detroit, Michigan where the black population presented a very different set of challenges.  The racial divide was huge and extremely ugly.  The amount of effort required to get a few groups for gay blacks was infuriating.  And still nothing at all was being done for the heterosexual black community.  When I left Detroit in 99, there were still no HIV support groups for the majority of the black community.  Because of the brutal nature of American politics, every group had to beg and plead for resources that overall, reduced our ability to be effective in serving our community.

I can only imagine the stigma that hetero pozzies must face.  Many of them must retreat into the closet, because of a stinking virus.  Sometimes, like now, when I am responding to all of this I get overwhelmed by how insensitive people can be to each other.

Sweet C, Thanks for your thoughts.  You represent possibly the most under-served segment of humanity in regards to HIV support and prevention efforts.  The growth of HIV in the black population is staggering and given my history, I understand what many of the issues are, surrounding this issue, but I am as lost today on what to do about it.

I recall far too many conversations with black religious leaders, who refused to acknowledge what HIV was doing to their community.  There are different forces at work in the black community and being black and gay, is not an option for most.  Add to that the issue of sex between men (of all colors), outside of a relationship with another, and the lack of prevention information for that group and we are now living with the results of such short sightedness.

Most important though were your comments regarding the influence of gay perceptions on the black community.  I believe that until all communities except the hard reality of HIV, that we will continue our search for answers.  After 30 years of this and we are still talking about the how and whys of infection routes.

Finnboy, you also have a great attitude and I thank you for your efforts to educate others, because I know how difficult it can be.  I also know how rewarding it can be, when as you said, you get other people to change their perceptions regarding HIV.

As to AIDS activists, I can agree that our views should reflect the current state of affairs, you cannot deny the history that we bring to the table.  I know some are stuck in the past, as is part of the gay poz community, but that still does not diminish what they have accomplished.

Iggy, wonderful post and you are so right that we must direct our efforts toward reducing stigma to those groups that we can reach.  Moreover, I can think of no better way to live a dignified life than by being strong and true to ourselves, no matter what our challenges.   

Offline BT65

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Re: The Elephant in the Room
« Reply #17 on: September 23, 2008, 01:46:10 PM »
One risk group that hasn't been mentioned here are the IV drug users.  Way prior to my getting infected, I was an IV user.  When people find that out, well, it's worse than saying one's an "alcoholic."  At least in this community.  Because of where I live (South Bend, IN-Notre Dame-huge Catholic) IV users are cast in the trenches with gay men. 

I truly wish there would be more needle exchange sites (there are none here).  Until people realize that this disease won't slow down until all are reached out to, the stigma will continue to exist. 

Me personally, I'm bisexual and that's a whole other basket of goodies in a lot of people's eyes.  I've met people who don't believe bisexuality is real (but homosexuality is).  Trying to explain to them that it does (exist) and I am is difficult at best.  Add AIDS onto that and, well, it just leaves people looking puzzled (and most disgusted).
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Offline Buckmark

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Re: The Elephant in the Room
« Reply #18 on: September 23, 2008, 06:33:02 PM »
A discussion in another current thread on "Ignorance in Personal Ads" brought up some thoughts on how other people's ignorance or downright hostility (which is sometimes found in personals ads) contributes to stigma.  While I avoid posting cross-topic, I thought what I posted there would also be relevant here:


...
I probably wouldn't feel as much stigma if I didn't see so many ignorant, bone-headed personal ads.  But how do I change people's perceptions?  And should I care to?  I have to admit that it does bother me when I hear ignorant comments about people with HIV, such as those seen in personal ads.  My intellectual side tells me that this is a reflection of them, not me.  However, my emotional side tells me something else -- that I'm somehow a lesser person because I'm HIV+.  Intellectually I can say to myself that I can only be put down if I let others put me down.  Feeling that and owning that, however, is another matter.


For convenience sake, here is the link to the other thread on "Ignorance in Personal Ads"

http://forums.poz.com/index.php?topic=22826.0

For what it's worth, perhaps it will contribute to this discussion.  Perhaps what I am really speculating is this:  is it how we feel about ourselves having HIV that contributes to stigma as well?

Regards,

Henry
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     One is that God loves you and you're going to burn in hell.
     The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love."
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Offline Ann

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Re: The Elephant in the Room
« Reply #19 on: September 23, 2008, 07:45:44 PM »
is it how we feel about ourselves having HIV that contributes to stigma as well?

Yes, Henry, I think this has a lot to do with it. It has a lot to do with how we feel about ourselves, period. It's to do with our expectations of how others will react to knowing we are hiv positive and where does that expectation come from but how we feel about ourselves?

If I feel I'm a basically good person I will expect others to feel the same.

If I feel I'm basically a person worthy of only scorn and ridicule, I'll expect others to feel the same.

It is what it is, my friends. We discount personal feelings of self-worth at our peril. I've long said that the basis of sex education lies not in the biological features, but in the self-esteem features. To teach the fundamentals of REAL safer-sex, we need to be instilling in the young a sense of self-worth. We are NEVER going to win the prevention fight until we teach young people that they are worthy human beings. They count. Until they know this, gay, straight or anything in-between, we're just shouting into the wind.


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« Last Edit: September 23, 2008, 07:48:00 PM by Ann »
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Offline Sweet_C

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Re: The Elephant in the Room
« Reply #20 on: September 23, 2008, 10:32:35 PM »
I definitely think that how we feel about ourselves has a lot to do with the perceived stigma.  In my mind, I know that I would get lots of support and love if I were more open with my status, but it's my own fears that hold me back.

It's also bad because since so many people are so secretive about it, non-poz people don't get a lot of information about it.  I think if people knew more people who were positive, then it wouldn't be so scary. 
Tested positive on September 11, 2008

Offline Joe K

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Re: The Elephant in the Room
« Reply #21 on: September 23, 2008, 10:34:00 PM »
It is what it is, my friends. We discount personal feelings of self-worth at our peril. I've long said that the basis of sex education lies not in the biological features, but in the self-esteem features. To teach the fundamentals of REAL safer-sex, we need to be instilling in the young a sense of self-worth. We are NEVER going to win the prevention fight until we teach young people that they are worthy human beings. They count. Until they know this, gay, straight or anything in-between, we're just shouting into the wind.
Ann, you hit to the very heart of true prevention information that it must start with self-esteem.  I had so many self-esteem issues, surrounding separation anxiety, because I was orphaned, then adopted, then disowned when I came out and became infected.  Maybe if I had received some self affirming support, I would have cared more about my own health and would not have bare backed with anonymous men.  While I have forgiven myself for my infection, I still cannot forget what I did.  I expect that I will never forget and I know it contributes to my occasional self recrimination.

If we want the future to improve, we must instill a high level of self-esteem, to help support the individual in negotiating a very difficult sexual terrain.  They have to believe they are the most important thing and they are worthy of all the world offers and they have ultimate control over their encounters.  

Offline Sweet_C

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Re: The Elephant in the Room
« Reply #22 on: September 23, 2008, 10:39:49 PM »
I thought the online dating thread was interesting too.  There are lots of non-poz folks who complain about their lack of success in online dating.  No doubt HIV is going to shrink your dating pool, but I think to some extent we make too much of it.  
Tested positive on September 11, 2008

Offline gatortony

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Re: The Elephant in the Room
« Reply #23 on: September 24, 2008, 11:00:14 AM »
Hello Joe et al...

I agree with you on the stigmatization we perpetuate among ourselves and that of the fundamentalists looking for a free ride on the God hates fags ticket.  I, too, remember the days of fearing a drink in a restaurant if you thought the waiter was gay.  Having come through what seems like a never ending chorus line of political administrations who dance their disinterest and hatred on our graves, I must report, at least in my tiny corner of North Central Florida, a delightful difference I have noticed among the young on a college campus.  Am "out" both in my sexuality and disease where I work.  The job demands I be surrounded quite often by young people all of whom are aware of the viral ICBMs waltzing through my body. Perhaps it is the appearance of HIV+ characters on the shows they watch...possibly the work of activists both local and global to humanize the disease instead of imprinting upon it a medieval aura of divine retribution.  Whatever the cause, I have seen a sort of evolution in the way people look at me.  There will always be the whispers as I take a week off to get over some new and improved exercise in biological futility--the "polite" way well meaning friends tell me to proffer cancer or something less shameful as a reply when asked why I sport the chemo glow.  I do agree with you on so many levels.  What keeps the tiny spark of hope for humanity I carry somewhere in my formerly freeze dried heart is that society (at least more than in the Longtime Companion days) seems to be moving forward, albeit dangerously in the cases of the young who believe HIV is so manageable as to be not an issue to fear when they engage in risky behavior.  Far from being a balloon ride or climbing the side of a mountain like some of the med ads make it seem, I can still take my daily garbage bag sized bag of meds while sitting in my office without the fear of torches and pitchforks.
Cheers,
Tony
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Offline Joe K

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Re: The Elephant in the Room
« Reply #24 on: September 24, 2008, 12:09:27 PM »
Hey Tony.  I am so glad you mentioned college campuses, because much of the change in stigma will be led by the next generation.  I have a 22 year old daughter and I have been meeting her friends for years and I am more than impressed by their diversity and acceptance.  This past summer, Kate came to Montreal with eight of her friends.  While we spent time alone, we also took the group on a site seeing trip of the city.

Not once did I hear any of them make comments judging others or refer to any group as anything but worthy of equality.  Even when the topics were a little heated, it was apparent that the X generation has very different views on equality.  In discussions it was clear that they did not approve of blanket generalizations and no one seemed uncomfortable around us, even as we held hands while sight seeing.

Whenever I think of her, I think of her peers and from what I have seen, of her world for four years, the future looks very bright indeed.

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Re: The Elephant in the Room
« Reply #25 on: September 24, 2008, 12:16:13 PM »
Hey Joe,

I have a 24-year old daughter and she has known about my diagnosis since 1989; I told her awhile after her father's funeral.  But, by me telling her, she learned not to fear HIV+ people, and also was around all types of people.  She even was with me a few times when I sat by some dying friends' beds. 

She's extremely open-minded and has no prejudices today.  I'd like to think part of that was how she was raised and the wide circle of people she has been around.  Usually when one explores what one's fearful of, it becomes less and less. 
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline David_CA

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Re: The Elephant in the Room
« Reply #26 on: September 24, 2008, 12:50:06 PM »
She's extremely open-minded and has no prejudices today. I'd like to think part of that was how she was raised and the wide circle of people she has been around.  Usually when one explores what one's fearful of, it becomes less and less. 

I'm sure that's a major part.  You know, the old expression "You must be the change you want to see in the world" (often cut down to 'be the change') is applicable here.  I think that often we can be the change in others.  To a point, it's up to us to break the stigma in whatever small ways we can.  I imagine your daughter 'projects' her non-prejudices on others. 

edited to add:  Joe, you obviously did just as well as Betty in the area of non-prejudice towards folks with HIV / AIDS.  (I somehow missed reading your post above)
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Offline Joe K

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Re: The Elephant in the Room
« Reply #27 on: September 24, 2008, 12:59:13 PM »
Betty, Kate has known about my HIV since she was three.  She was with me at the ASOs and she witnessed all the horror of those times.  That experience changed us both.  Never once did she shy away from anyone, regardless of how ill they were, because after all, they simply had a disease.  I could not be prouder of her and the hope that her generation represents.  It is amazing what a little honest perspective can do in promoting notions of diversity and tolerance.

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Re: The Elephant in the Room
« Reply #28 on: October 04, 2008, 04:59:55 PM »
Joe,

This is a very good topic to reintroduce to the forums.  The HIV/AIDS stigma is alive in several ethnic and racial communities.  My post from August 5, 2008 relating a Washington Post article concerning the Latino community sheds some additional light.

An interesting article in today's Washington Post.  I venture that this applies to other groups as well.

Article link: http://www.washingtonpost.com/wp-dyn/content/article/2008/08/01/AR2008080102752.html
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