The Sound of Stigma
by Mark S. King
An essay by Mark S. King—an AIDS advocate, an author and a blogger living with HIV since 1985—on why HIV stigma among gay men persists.
to read a digital edition of this article.
Mark shares this essay at the 2013 International Conference on Stigma.
Stigma is insidiously quiet. It is conjured in the mind, born of discomfort and fear, and then it is projected at “the other” among us. It judges them and isolates them. And it happens without a sound.
Stigma lets us take comfort in seeing things in others about which, we believe, they must be ashamed. It is a lazy way to feel better about ourselves—and therefore a popular human activity—and gay men are remarkably good at it. So many of us survive childhood taunts that by the time we come of age we have developed fairly lethal claws of our own. We know how to hurt others before they can hurt us.
But when the AIDS pandemic began over 30 years ago, gay men learned that whatever cleverness we possessed was no match for a crisis that questioned nothing less than our existence on this earth. Churches said we were damned. Politicians wanted us quarantined.
Gay men prefer to remember the earliest days of AIDS as a heroic time, and there is no doubt that many of us behaved that way, but stigma also was a fearsome, daily aspect of our lives in the early 1980s. Heterosexual parents were not the only people disowning someone with an AIDS diagnosis. Gay men also were driven by ignorance and fear. We kicked out our sick roommates. We refused to give them manicures or cut their hair. We turned away from their sunken faces at the neighborhood bar, when they had the guts to show up at all.
Once the initial hysteria subsided and the virus and its routes of transmission were identified, stigma between gay men calmed somewhat, if only because there was so much work to be done to care for the dying. Our brothers with AIDS were not so much stigmatized as pitied for their loss of dignity and humiliating deaths. They were tragic victims, exalted as martyrs.
Until they weren’t. With the advent of breakthrough treatment in 1996, the dying nearly stopped in its tracks. Patients got up from their deathbeds and rejoined the living. There were cheers all around. Within a few years, even the word “AIDS” had nearly disappeared from the gay lexicon.
Those former patients, and the many gay men with HIV to come after them, had no interest in playing tragedy, or in being wizened and terminal and predictable. They wanted to take their rightful places in our social scene, to date and fall in love, to enjoy the bars and the clubs and the house parties. They wanted to laugh and dance and live.
And that is when, in the deviously quiet way in which stigma operates, all hell broke loose. We built social fortresses to separate Us from Them. We didn’t have to bother labeling one another because the disease did it for us, creating an HIV hierarchy that started with “positive” and “negative.”
The more HIV treatments improved, the wider the viral divide became. Our mutual resentments and jealousies worsened. As the physical scars of AIDS faded—the skin lesions, the wasted faces—our anxiety level rose as HIV status became less apparent. You can just imagine the frustration of the discerning gay man, no longer capable of telling the positive from the negative. Where’s the comfort of stigmatizing someone when you can’t tell who they are?
Today, our attitudes about HIV and other gay men range from self-righteousness to outright contempt. From whatever our vantage point, we have shamed and stigmatized everyone else into a corner, and the result is a community in revolt against itself. We are a snake eating its tail.
It might be easy to doubt this gloomy view of the gay community. None of us like to believe ourselves guilty of treating “the other” badly. The only thing we admit for sure is that we have been mistreated and misunderstood. Our self-interest is telling.
Maybe the problem is that, beyond the convenient anonymity of online hookup sites or mobile apps, you don’t usually see HIV stigma in all of its black-and-white ugliness. You don’t hear its voice.
Listen closely to the ugly words of stigma. A special version even exists for the newly diagnosed.
Gay men who get infected today are out of their minds. They are the failed ones, the grave disappointments, the apathetic, the careless, the irresponsible. They spit upon the memories of our courageous dead. They have no respect for our history, for our monumental tragedy.
We might make motions to comfort them, but it is the kind of patronizing back-patting that we reserve for the truly stupid. We tell them they will be fine, really, and we don’t look them in the eyes for very long. Our weary judgment shows.
Never mind that they are guilty of nothing more than being human, of being in love or getting drunk or trusting the wrong person or saying yes when they should have said no. Their weak excuses will be met with furrowed brows, and their dating life will wither. They will be marked and socially downgraded. They should be ashamed, and something inside us hopes that they are.
Do you hear it? Keep listening. There is so much more to say.
Before long, those newly diagnosed will join the promiscuous ranks of sexually active HIV-positive men. They are the unclean ones, the barebackers trolling the Internet, the murderers with tainted blood on their hands, the crystal meth addicts lounging in bathhouses with the door ajar. They are the unrepentant, the whores, the vile merchants of death.
Never mind that these men struggle to disclose their status, that they are routinely rejected socially and sexually, that their waning self-esteem is being strangled by our judgment, that sometimes their lives feel so forsaken they settle on whatever community will have them. The fact that stigma and depression often lead to escapist behavior is of no interest to us. We fear they could be having more sex than we are—hotter sex maybe—and the chance it might not be hurting anyone is infuriating. They should be ashamed, and we will make damn sure that they are.
The lowest rung of the gay HIV hierarchy is inhabited by older gay men who have lived with the virus for decades. They are the dependent ones, the sunken-faced humpbacks cashing their disability checks and wiling away their days sipping coffee in Café Disabilité. They are the aging invisibles and the sexually worthless.
They try to mask their feeble wasting with testosterone injections and protein shakes and facial fillers, but we know the truth. We see. They remind us of our darkest days, these unwelcome relics, and though we ignore them their haunting persists, in the daylight of the grocery store and the darkness of the bars. We avert our eyes and anticipate their extinction.
Never mind that they were among our earliest activists, our courageous long-term survivors, the men who scrawled words like “empowerment” and “advocacy” across the bureaucracies of their time. Forget that they have seen death in obscene quantity, that whatever joy they possess is a triumph of spirit. They should be ashamed, but we don’t regard them with enough interest to care.
Do the words sound familiar at all? Do you hear the voice? It isn’t nearly done.
Take a hard look at HIV-negative gay men. They are the superior ones, the corrupt morality police, the hypocrites, the gentlemen in waiting. Above all else they are the supremely lucky, because they can’t possibly live by the crushing code of conduct they impose on the rest of us.
They reject us as damaged goods. They promote how “drug and disease free” they are. They publicly advertise their outdated HIV results. They tell us we would make better friends than sex partners and then they don’t call again. They find clean, disease-free love with other, similarly superior men so they might have a life out of reach of the great unwashed.
Never mind that they have successfully avoided infection thus far, that they have buried friends and comforted lovers, that they withstand the unnerving ritual of HIV testing and worry about whether or not they will pass or fail. And please, pay no attention to the fact that they fear HIV stigma at least as much as positive men do, which is one compelling reason they hold tight to their negative status with such fervor.
None of their circumstances can excuse their indictment of the rest of us. We marvel at their lack of shame, and wonder bitterly if their attitudes might change if they became infected.
At least they don’t suffer the same wrath as do HIV-negative men taking Truvada, the HIV medication used as a pre-exposure prophylaxis, or PrEP. They are the traitorous ones, thumbing their noses at their elevated negative status by intentionally dipping themselves in the viral soup of casual sex. They are obviously barebacking infected guys or they wouldn’t be popping pills that blunt the consequences of being a poz-loving slut.
And God help those who don’t admit they are infected and have sex with a negative person, because they are the criminal ones, the terrorists, the dangerous liars who must pay dearly for what they’ve done. They belong in jail and off the streets, like drug dealers and rapists.
Never mind that, for reasons we all well know, they can’t always bring themselves to disclose, that they may use condoms, that they may be adherent to their meds and undetectable, and that no single case of an undetectable person transmitting the virus has ever been verified. Disregard the fact that conservative lawmakers and prosecutors are more than happy to exploit our thirst for vengeance and lock up some diseased fags who dare to have sex at all. Forget that during the first years of AIDS, when the virus reliably killed you, those who became infected took personal responsibility and called their doctors to start treatment and not the police to press charges.
That is the sound of stigma. It is bitter and rageful and terribly afraid. I can hear my own tones in it, like a voice in a chorus, when it says the words I would never admit to thinking. Do you hear your own?
Gay men have known since the AIDS pandemic began that empowerment is the antidote to stigma, that the more proactively we approach our health care and build support networks, the less stigmatized we feel. The answer lies in our refusal to be marked and shamed. But our own community challenges us at every turn.
Stigma operates exactly like the deadly virus we claim to oppose: It infects pieces of us and then turns those factions against the rest, until the entire body is weakened and vulnerable. We all know how that process ends.
That is what the gay community has become. We are AIDS itself.
When HIV disease is over—and some day it surely will be—our jubilation will be beyond all imagining. We will have finally put an end to the health crisis that has plagued us for generations, a crisis that polarized nearly everyone, most particularly us as gay men. And once the celebrations fade, another equally important moment will come.
We will take a look around at our friends and lovers on both sides of the viral divide—at all of our brothers whom we stigmatized for one reason or another—and our old judgments will be transformed to a deep regret. Hopefully, in that moment, a certain kind of grace will emerge. We will clearly see the deep, private wounds of HIV stigma, and we will finally allow that we are all simply and imperfectly human. And then everyone will have some explaining to do.
It wouldn’t be too soon for that moment to happen now.
Go to blogs.poz.com/marksking and myfabulousdisease.com to read more by Mark S. King.
Search: Mark S. King, gay stigma
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comments 1 - 15 (of 167 total)
Heinz Voss, San Francisco, 2015-04-14 07:48:14
Two words - love & intimacy - I know how to look the definition up on the internet and educate myself. But in the 52 years I have walked this planet as a gay man, I have yet to experience them. Anonymous sex I have a lot of practice in, and now I understand better why. So I keep moving forward as my community is displaced from SF by rich folks - its a dream all right, my American Dream.
jens, , 2014-10-21 05:35:44
I'm very proud I do not have HIV. I used to be made fun of when I asked about status, when I insisted on condoms regardless of status. I was called square because I thought getting drunk with the chance of sex a dangerous place to be. I was called over concerned or neurotic. Now, some of my friends are HIV +. Some of them tell no one and continue to have sex putting other people at risk. Some of them are not doing very well. I'm proud and Negative.
Timmm55, PALM SPRINGS, 2014-09-24 17:11:56
I absolutely loved your article. Do you ever thing we will be jubilant? It could be over in 5 years, mostly due to Undetectables....and testing everyone. 250,000 people are undetectable with a chance of spreading the virus reduced from (probably) ZERO-4%. That in itself should be cause for jubilation.
I've been labeled a psychopath for suggestion two adults can decide for themselves to have unprotected sex, POZ/undetectable and NEG. We will develop new victims for a new stigma. It never ends.
VJ Crotty, Palm Springs, 2014-06-15 21:24:43
Being a long term survivor (87) in excellent health I completely resonate with this story and remember the earlier 80's in NYC like presented in "A Normal Heart" on HBO. So much has happened and so many wonderful lives snuffed out. Yet today's gay male has no idea or compassion for what we went through all so they could live as well & out as they are today. They have no idea what it was like to have no recourse in discriminating of housing, employment, insurance,authority figures for starters.
Patrick Mulcahey, San Francisco., 2014-06-01 14:53:14
A powerful, provocative, perceptive piece of writing. Thank you.
tony g, , 2014-03-07 17:32:54
nice article. Could not have said it better---Va. has persecuted me for 26 years now. Even the gay community.
I'll survive, though. That's what I do. Live and Survive.
I wish there was a survivors reality show-or-some thing like that
Jack Kelly, Las Vegas, 2013-12-31 14:54:02
Mark, I commend you on such a honest article on HIV and the Gay Community. I have lived the HIV+ stigma for 24 years. As a gay man, that is now 52 I see the stigma everyday. It has not gotten better. The stigma has gotten worse. Yes, you are so correct about the older gay many who is HIV+. I feel it everyday as the lowest rung on the ladder in my community. For I am many who helped create all the services for the HIV+ community. Thank you again for your hard work for all of us!
will, coram, 2013-12-07 09:42:05
I think this is the most realistic and interesting article that i have read about HIV/AIDS stigma. I have been working and analyzing stigma in the gay community since I became POZ in 1999 and I never heard somebody saying so clear and telling the truth about this terrible disease.
Chris, Sydney, Australia, 2013-11-10 07:13:28
I just want to shout THANK YOU for this article. As an HIV+ person, Mark S. King expresses everything that I feel about HIV stigma.
Larry Brady, Vinalhaven, 2013-10-23 10:46:06
Fantastic piece of writing, Mark. Always enjoy your insights into the gay community and those of us living with HIV. Great read.
Ashleigh, TORONTO, 2013-09-30 15:54:10
p,eter abbott, san francisco, europe, 2013-09-18 18:33:44
I have been following Marks videoblog for years, because his life experience stems from the fact that he lives in S Florida. I used to live there, loved it and hated what it was doing to me, I miss it, but I dont miss what it did to me. It is a hostile place for Gay and Hiv folk. I prefer living in a place friendly to our kind. Far less Stigma, and no doubt, Stigma makes sick. Most of the West Coast and Europe is 'Gay, Positive, so what ? Lets live in Peace' There must be other places too. Peace
Choctawbear, Moore, 2013-09-09 17:41:18
well written. very angry though. we are each responsible for our own behavior and its consequences. This is said by someone who survived the HIV holocaust, who should be poz and is not. We are fickle creatures - we look at the short and long term and decide whether our investment is worthwhile, all the time without thinking about it directly.
Would I decline someone who is poz as a short term partner? I would not and have not. Would I decline to invest in someone long-term who is? I don't know.
craig, Raleigh, NC, 2013-08-20 16:38:18
I want the Praise!!! I'm 47 and I got sober, broke up with a boyfriend of 7 years, went through college and job changes, WITHOUT contracting HIV. It makes me furious that the men who are HIV+ are so dismissive of my no-barebacking policy as a symptom of internalized homophobia. How dare the HIV+ community dismiss me as a victorian homophobe because I chose not the have HIV??
Justmealone, Baltimore, 2013-08-20 15:15:18
comments 1 - 15 (of 167 total)
Thank you. But what about heterosexual female infected by a man that refused to come to terms with his sexuality. I had to bury him, raise my children and begin to take medicine to live. This has been a struggle. How do you meet a straight man after that. I hope more guys realize now the importance of revealing themselves to women they chose to be with sexually. At very least family members should tell us. Bless you for opening up your heart.