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 105 - 119 (of 164 total)
stephen, seattle, 2013-05-15 00:00:56
Wow, this sat me down. I have been poz for 10 years. Trying to pretend life is normal. Not giving in to the stigma, but silently I have had my down moments. You sir, put in to words what I never could. Thank you. You brought a tear to my eyes. Very moving. This year I will turn 50, so I am that guy. Its hard sometimes to smile, and push on. When you can feel the judgement. But carry on we must. If there is a god, he most certainly blesses you.
Russell, Toronto, 2013-05-14 22:10:27
As a term survivor all I can say is thank you. I will now to my best to get this to viral(pardon the pun.)
blktoto, Hartford, 2013-05-14 21:34:05
To the point, well said.
Joe Monroe, Santa Fe, N.M., 2013-05-14 21:25:44
I wish I could agree with the happy ending. I think all of us have gone beyond return. I used to proclaim the coming of the cure right after the 1996 revival. I felt empowered by my diagnosis. It is not that way today. We are all too tired, negative and positive. Aging and AIDS is something we all should treat with respect. We will all be there someday and of course, some guys will benefit from the cure, if it comes, more than others. And there starts the whole shell game again.
Mark, Brooklyn, 2013-05-14 20:46:31
A deep reality check of how we behave, think and view each other and yes, I hear you loud and clear. Great article. Thank you.
barry herman, littlestown, 2013-05-14 20:24:36
i am so glad this has been addressed, however i don't think anything will change because it comes down to sex. i have never felt so isolated in my life than now. being poz myself for 20 years have been nothing but a terrible experience due to being rejected all the time just for having the virus. I am a identical twin which makes it 10x worse. You are no longer good for anything except the silent talk stay away from him, i heard he is poz what a terrible gay community we live in.
Andy, Walnut Creek, CA, 2013-05-14 19:45:14
I wanted to read an update on HIV stigma, being poz since '85. This disappointed me, though. Is EVERYONE so toxic as they are described here? Certainly hasn't been my experience. I agree the "D/D free" standard is galling, given the risk of any given casual partner lying about their status. With whom are you really safer? However, the best antidote to stigma is to get on with your life, normalizing HIV. Gay men are among the privileged HIVers. Use this power, and love this world. You can.
Rev. Joseph Shore-Goss, Sun Valley, 2013-05-14 17:59:54
Thank you for such a honest and enlightened reflection.
Jeff DuCharme, Tacoma, 2013-05-14 17:56:04
Mark, did you read the summary I provided? Let me help you out. "The newly infected partner had a negative HIV-1 screening ELISA when his HIV-1-positive partner was already on antiretroviral treatment with undetectable pVL, which remained undetectable beyond the time of seroconversion in the initially negative partner." Not to mention POZ individuals living with other STIs, which increase viral shedding in semen and exacerbates stigma. All the same, great article.
Joe, San Diego, 2013-05-14 17:48:38
Simply "amazing piece" I am at a loss for words...
Lobo Al, Oklahoma City, OK, 2013-05-14 17:11:11
I wish I could have said it this eloquently. Ever since I found out I was poz, I have been all but ostracized. No one wants to date me more than once. Even this week, I lost two guys I thought were really serious about getting to know me and start a relationship (one I had been dating for 2-3 months) and they both dropped off the face of the Earth after finding out I was poz. I'm a great, kind hearted guy with a lot to give and have had my heart broken too much to care anymore.
Giles Davis, London, UK, 2013-05-14 14:50:26
Yes there is stigma over HIV, but nothing compares to that of Hepatitis C; having managed to stay negative for 7 years of sexual activity since coming out, having always tried to play safe, in April 2010 I was diagnosed HIV +ve, was just about getting my head round it and if anything found companion ship from a lot of guys, but only 5 months later the news came I also had Hepatitis C - a whole different story; people telling me to "take your pathetic Hep C ridden life & go die". Any suggestions?
philliphenry, san antonio, 2013-05-14 14:43:00
Thank you so much for writing this article, it's as if you have lived my life with me somehow with out me knowing you were there. You put so well in your words how my life has been since I was diagnosed 25 yrs ago. Thank you again so very much. Now where's my snot rag, you got me all crying here, LOL! Thanks again!
MAT STRAZZULA, boston MA USA, 2013-05-14 14:12:10
First as a peron who have lived.30+ yrs with HIV now AIDS. I am a surviver, I am proud as I stuck by my friends as they died. Second, sex after 50 can be just as good. Third the newly infected, have their own hell of meds, they will have to live their lives on meds. Poz gay men need to be seen as, what any negative gay man might become. S*&t does happen. All gay men need to see each other as brothers. You do not have to ike each other, but you must fight for each other. Lets get to the cure.
Kile Ozier, San Francisco, 2013-05-14 13:58:28
comments 105 - 119 (of 164 total)
Brilliantly and articulately written, Mr. King. I embrace your wish for this Time to come, soon...and, yes, there will be some Explaining to do. I join you, too, in the hope that gentle forgiveness will prevail.