AIDS/HIV | Ari Ezra Waldman

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The Political and Legal Power of Identity: Coming Out as HIV-Positive

BY ARI EZRA WALDMAN 

Michael J. Kaplan, President and CEO of AIDS United, took to the Huffington Post yesterday to call for a "National HIV Coming Out Day. A day where we face the reality that America is living with HIV, that our friends and family need to be tested, that those infected can live better through treatment, and that we can get to an AIDS-free generation."

AidsribbonFor Mr. Kaplan a National Coming Out Day for HIV-positive individuals, which would be on top of all the other awareness days -- National Black HIV/AIDS Awareness Day, National Women and Girls HIV/AIDS Awareness Day, National Native HIV/AIDS Awareness Day, National Asian & Pacific Islander HIV/AIDS Awareness Day, Caribbean American HIV/AIDS Awareness Day, National HIV/AIDS and Aging Awareness Day, National Gay Men's HIV/AIDS Awareness Day, National Latino AIDS Awareness Day, and World AIDS Day -- would concretize the HIV problem in this country and begin to address the stigmatization, isolation, and unfair enmity some people impose on members of the HIV-positive community.

The strategy is familiar, and it is one that the gay community has used to great success since the days after Stonewall. Hiding your sexual orientation, we argued, was tantamount to accepting the stigma of shame and burden of second-class citizenship thrust upon you by a heterosexual majority. Coming out, though, was not just a statement of pride and a challenge to the social status quo. It was the essential first step of a concerted effort to turn gays from media caricatures to real people, with goals, loves, hopes, and dreams. If you were out, you could have a conversation with your neighbors when some bombastic politician bloviated about sodomy and the end of all things. They could attach real examples to abstract concepts like discrimination if they knew that you had been fired simply for being gay. They could see the litany of concrete ways in which anti-gay laws like the Defense of Marriage Act, "Don't Ask, Don't Tell," or marriage bans were hurting you and your family, not just the harder-to-understand "gay community."

The question is: Will coming out as HIV positive benefit the HIV-positive community the same way coming out as gay benefited the gay community? Is there any reason to think the situations will be different?

StaleyThere are similarities, but also real differences. Given those similarities, some in the HIV-positive community think that special "coming out days" are fine. They raise awareness and give hidden communities the chances to join forces to do something terribly brave and often dangerous. As Peter Staley, the founder of ACT UP and the Treatment Action Group and star of the powerful and successful documentary How to Survive a Plague noted via email, "This certainly can't hurt. The HIV closet has been hugely destructive, ultimately feeding the stigma that all of us suffer from. Acting ashamed is no way to fight the shaming."  

But, given the differences, it is not at all clear that a coming out drive is the best thing right now. As Lambda Legal's HIV Project Director Scott Schoettes told me, "We think it is most important to focus upon creating an environment in which people feel that they can safely acknowledge this aspect of their lives if they so choose, to empower people with information regarding the risks and benefits of disclosure in various circumstances (as well as the legal protections available and the limits of those protections), and to ensure that individuals are making a fully informed and voluntary choice about if, when and to whom it is appropriate for that individual to disclose this information."

I am uninspired by the proposal of another awareness day. Standing alone, another "day" is not going to make coming out as HIV-positive any more likely or any more helpful to the cause of ending discrimination of HIV positive individuals. To do that, the rest of us need to help.

Let's discuss how AFTER THE JUMP...

There is reason to believe that coming out as HIV-positive would be a great boon to acceptance of HIV-positive Americans. In addition to all the benefits discussed above -- concretizing discrimination, turning esoteric concepts into real world examples -- coming out as HIV-positive is necessary for any otherwise silent or hidden group to stand for its rights. Making coming out an essential part of a civil rights strategy, then, has social and political benefits.

If the example of the gay community is any indication, there are also substantial legal benefits. As much as we would like coming out to be the stuff of slow news days, the truth is that as long as conservatives insist on making our sexual orientation a basis of their hatred and discrimination, our coming out is a political act, entitled to protection under the First Amendment. 

Some members of the HIV-positive community challenge the comparison to the gay community. Being HIV positive is, if anything, more stigmatized than being gay and it always has. They argue it is still socially acceptable to ostracize people who are HIV-positive, whereas it is increasingly the stuff of the fringe to hate people just for being gay. They also argue that there is too little support for the HIV-positive community among the rest of the population.

Maybe that's true, but then it's only a matter of degree. Under this theory, there is nothing different about coming out as gay and coming out as HIV-positive other than the fact that, as gay persons, we have been coming out for longer. We have the benefit of 30 years of being out and proud during which time, the American people not only got used to us, but also started actively supporting our quest for equality.

CambaBut, there is one way in which coming out as HIV-positive is significantly more problematic than coming out as gay. And, it is a product of the HIV/AIDS awareness movement itself. Public health organizations focusing on HIV/AIDS in America have recently been focusing on two goals: eliminating the stigma associated with being HIV positive and reducing infection rates among young men in the gay and other minority communities. Achieving these goals often requires us to educate the greater population about HIV transmission and amazing new medications that make living and thriving with HIV a long-term reality. At the same time, we have to target susceptible communities with reminders that HIV is still a burden. When that message is filtered through a media focused on sound bites and allergic to nuance, it could sound like a mixed message: HIV is bad, but not so bad that you should stigmatize those who have it. That's a delicate balance to maintain. In a world where we still have to persude young gay men that HIV is still something they should try to avoid, coming out as HIV positive will always be difficult.

At a minimum it is incumbent upon us -- the gay community, lesbians, heterosexual allies -- to support our brothers and sisters to make it easier to come out as HIV-positive. Just like we support the younger generation's desire to be out and proud in schools, we should support the similar desire of those who happen to be HIV-positive. Here are a few simple steps we can all take to do that:

1. End the stigma. The level of disrespect some members of the gay community have for members of the HIV-positive community is staggeringly upsetting. When I was in San Francisco last year, I conducted an informal (admittedly unscientific) survey of passersby in the Castro, asking them if an employer should be allowed to fire someone simply for having HIV. Ninety-seven percent of respondents -- 319 out of 329 -- said either "no" or "of course not" or some derivation thereof, with the few contrarians saying something about health care costs for small businesses. Yet, more than 60 respondents insisted on saying, unsolicited, that they were not HIV-positive. This should sound familiar: "I'm totally straight, but we shouldn't hit gay people." That helps no one. It suggests that we accept that being HIV positive is somehow something to be dismissed or denied.

2. Learn your history. An increasingly cavalier attitude toward unprotected sex is just one manifestation of the younger generation of gay men failing to appreciate what the generation(s) before us went through. Survive a Plague is an informative and well constructed documentary that teaches us about a particularly meaningful (and devastating) part of gay American history. The more younger gay persons understand where they came from, the more likely they will appreciate their indelible connection to their HIV-positive comrades. The team responsible for How to Survive should also make more of an effort to screen the film for university students and straight allies rather than preach to the choir.

3. Get tested. The best way to fight HIV stigma is to stop hiding. The only way we can do that is to get tested. Of the 1.1 million Americans estimated to have HIV, more than 20 percent don't know it. This kind of willful blindness is risky to sexual partners and to the community as a whole. 

4. Invest in the community. As my friend James Loduca, Vice President of the San Francisco AIDS Foundation (the country's largest AIDS services organization), told me, "An awareness day is great -- in fact, I'd like 365 of them. You see, HIV stigma and shame are powerful foes, and it's going to take a lot more than awareness to overcome them once and for all. We must invest heavily in programs that increase self-esteem, community connectedness and resilience while reducing shame about STIs, substance use and mental illness." An awareness day cannot, without more, encourage more people with HIV to come out. Awareness is a small part of the calculus; you are a bigger part.

What else do you think we can do to make it easier for our friends in the HIV-positive community to come out?

***

Ari Ezra Waldman teaches at Brooklyn Law School and is concurrently getting his PhD at Columbia University in New York City. He is a 2002 graduate of Harvard College and a 2005 graduate of Harvard Law School. His research focuses on technology, privacy, speech, and gay rights. Ari will be writing weekly posts on law and various LGBT issues.

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Comments

  1. I'm sorry, but the best way to avoid HIV is to be safe, not to be tested. Of course, if you have multiple sex partners, you should get tested even if you are being "safe" (i.e. using condoms), but getting tested if you're not using condoms will do almost nothing to avoid HIV.

    I think we should work to decrease HIV stigma, but like lung cancer and diabetes, HIV is entirely avoidable if you make smart choices and are responsible for your own body. The most important thing we can do is work to dramatically decrease the instances of HIV, and despite what people say, ending stigma won't do that (HIV rates are rising among gay men after falling and then remaining steady for years) and don't tell me that that's because of increased stigma.

    Posted by: Mark | Feb 21, 2013 12:29:33 PM


  2. Sadly, we keep giving the haters ammunition with these rising HIV rates....conflicted and sad.

    Posted by: Sister Bertrille | Feb 21, 2013 12:44:38 PM


  3. @Sister I certainly hope your 'haters' comment isn't directed at Mark's comment because he's 100% correct. Anyone who disagrees is a complete naive moron.

    I have no sympathy for anyone who contracts HIV these days via irresponsible unprotected sex. You brought it on yourself, deal with it!

    Posted by: Secrets81 | Feb 21, 2013 12:54:28 PM


  4. @Mark, One can get lung cancer without smoking. So then, how is it "entirely avoidable"?

    Posted by: oliver | Feb 21, 2013 12:58:22 PM


  5. My post was not even remotely directed at Mark, moron. It was directed at anti-gay groups that use these statistics against us. Calm the F down.

    Posted by: Sister Bertrille | Feb 21, 2013 12:59:40 PM


  6. @Mark and @Secrets81, you are yet two more reminders of why I'll be staying in the closet about my HIV status. You are all judgment and no compassion. I guess neither of you has ever made a mistake in your life?

    Posted by: Asher | Feb 21, 2013 1:03:14 PM


  7. I realize that HIV is avoidable nowadays...but when you have a culture that celebrities the abuse of alcohol...mistakes are bound to happen when people's inhibitions and reasoning skills are lowered. I imagine the statistics for people getting DUI's and contracting HIV are similar. I personally think it should be a law that gay night clubs are required to distribute condoms or have condom dispensing machines available on site. (not to mention lube). I don't know, everyone makes mistakes...and HIV is just one of those mistakes that is much less forgiving than others. I'd be curious to know the statistics between alcohol use and contraction of HIV.

    Posted by: steve | Feb 21, 2013 1:07:53 PM


  8. @Asher, Mark and Secrets81 are a couple of idiots. The common cold is completely avoidable...just don't every leave your house and you won't get one. Lung Cancer, not so.
    Ditto HIV.

    Posted by: oliver | Feb 21, 2013 1:07:54 PM


  9. When you destigmatize something, you get more of it.

    "The best way to fight HIV stigma is to stop hiding."

    The best way to fight HIV is to stop having unsafe sex. But increasingly even that message is controversial or is seen as asking too much of people.

    No wonder 20% of American gay men are infected, according to the Centers for Disease Control.

    This whole post is mindboggling. It doesn't surprise me that barebacking is so rampant these days, that such sizable percentages of gay men in numerous surveys say they do it. It doesn't surprise me that HIV rates are rising again among gay men. We are apparently making a collective decision to excuse ourselves from *any* kind of responsibility for the sexual decisions we make, and instead are deciding to affirm the consequences of those decisions as something to be proud of.


    Posted by: Matt | Feb 21, 2013 1:09:43 PM


  10. These pieces never mention the fact that we are infecting each other with HIV. That is, we aren't just victims of infection, we are the perpetrators.

    Every new HIV infection is the result of someone, already infected, who infects someone new. It may not be done deliberately, but if you don't know your status, you are putting someone else at risk when you have sex with them.

    This piece never explains how fighting the stigma of HIV will reduce HIV infections. But I suspect that's not the point. The point is that apparently everybody has to be affirmed by others for everything. No one ought to ever feel bad about themselves, ever. And since most of the people who work in AIDS and HIV service organizations are already positive, what interest do they have in reducing infections? It makes a selfish kind of sense for them to instead focus on reducing the stigma of being HIV positive, even though when you destigmatize something, you get more of it.

    I feel bad for all the young gay kids out there who endure homophobic abuse and bullying only to come out and enter a community that is more interested in affirming and celebrating every kind of sexually dangerous activity than is interested in actually keeping people healthy.

    Posted by: Matt | Feb 21, 2013 1:20:52 PM


  11. I think HIV among gay men is probably a cultural problem surrounding the abuse of alcohol. I think that gay bars and nightclubs are profiting off of getting gay men drunk while not necessarily providing safety measures for their clientele. Plus, perhaps there needs to be more alternatives to bars where gay men can meet eachother? I don't know. I would hope that as a gay men come out earlier and have healthier self-esteem that the need to binge-drink will lower accordingly. I would like to see surveys on how many gay men contract HIV while they are drunk and/or high.

    Posted by: steve | Feb 21, 2013 1:23:07 PM


  12. Probably the most important approach we can take to end the pandemic is to better enforce laws punishing those who infect people with HIV. Any person who has HIV or an unknown HIV status should be criminally liable if he or she has vaginal or anal intercourse without a condom, has intercourse without telling his partner his status, or infects a partner with HIV. If any HIV-positive person who violated these laws was imprisoned for life in solitary confinement, then we could eliminate the HIV pandemic.

    Posted by: DB | Feb 21, 2013 1:23:33 PM


  13. Matt - I am given to believe that people are less careful or deliberately careless because they now view HIV as something you take drugs for rather than a terminal illness.

    When I was misdiagnosed with "gay cancer" thirty years ago, they said I would die in a matter of months. That was terrifying. These days death comes slowly and young people still can't imagine themselves at 50 or 60 so they don't experience the kind of fear I did.

    Posted by: David Hearne | Feb 21, 2013 1:23:50 PM


  14. @ David Hearne:

    "I am given to believe that people are less careful or deliberately careless because they now view HIV as something you take drugs for rather than a terminal illness."

    Sure, I agree. That's a part of it. But it suggests that "re-stigmatizing" HIV, not destigmatizing it, might help reduce new infections.

    If we don't want to stigmatize HIV, then we need to stigmatize unsafe sex. But between gay pornographers and aficionados pushing barebacking, to the recreational drug culture, to the "I should be able to do whatever the hell I want sexually and if you disagree you are exactly the same as Focus on the Family" crowd, good luck with that. Some sizable minority of gay men want to be able to do what they want, and if it means infecting other gay men with a virus that they will have inside them for the rest of their life, too bad.

    Posted by: Matt | Feb 21, 2013 1:30:24 PM


  15. nobody gets HIV from being "promiscuous"

    sexual transmissions come from not using protection.

    you can be a promiscuous and always use condoms.

    you can be a vestal bloody virgin until you finally "give yourself to the right man" whom you naively neglect to use protection with and end up with HIV.

    and stop with the "they have no one to blame but themselves" bunk.

    lord awmighty. young Ryan White (google him if your memories are weak enough that you've forgotten him) had the integrity to insist that there's no differentiation between who gets HIV, and how. there are no "guilty" and "innocent" victims of HIV - there are only HIV positive people.

    Posted by: Little Kiwi | Feb 21, 2013 1:53:12 PM


  16. "If any HIV-positive person who violated these laws was imprisoned for life in solitary confinement, then we could eliminate the HIV pandemic."

    Wouldn't you rather just send them to the guillotine? Just watch out for the splattering blood.

    Posted by: Derrick from Philly | Feb 21, 2013 1:58:52 PM


  17. Yeah, Little Kiwi, you *can* get HIV from one sex act with one person. But you're a hell of a lot more likely to get it if, say, you use meth.

    There's a reason you offer the example of Ryan White by name. HIV transmissions like the one that infected him are really rare, and nowadays are basically nonexistent. I would guess that he's the ONLY person you can think of, off the top of your head, who got HIV through a blood transfusion. But 20% of gay men are infected with HIV, according to the CDC. 20%! Stop pretending that everyone's equally at risk.

    If we could get the likelihood of gay men becoming infected with HIV down to only 3 times the likelihood of hemophiliacs being infected with it, that would be an awesome success!

    Posted by: Matt | Feb 21, 2013 2:10:31 PM


  18. nobody gets HIV from being "promiscuous"

    Nobody gets lung cancer from smoking! Nobody gets diabetes from being obese!

    Share more of your wisdom with us!

    Posted by: Matt | Feb 21, 2013 2:11:27 PM


  19. "young Ryan White (google him if your memories are weak enough that you've forgotten him) had the integrity to insist that there's no differentiation between who gets HIV, and how. there are no "guilty" and "innocent" victims of HIV - there are only HIV positive people."

    Every guy looking for bareback sex on grindr or craigslist right now is Ryan White. Every guy who infects someone else with HIV because he doesn't care about getting tested and can't be bothered to wear a condom is Ryan White. We are all Ryan White. I see now! How did I ever fail to understand that?

    Posted by: Matt | Feb 21, 2013 2:13:45 PM


  20. meth? what on earth are you talking about?

    you can also be *promiscuous and not only always use condoms, but never use meth. ever. i'm living proof.

    *anyone else get the feeling that those who use "promiscuous" pejoratively are those folks who think their inability to ever get laid makes them noble?

    Posted by: Little Kiwi | Feb 21, 2013 2:16:34 PM


  21. Matt, were you dropped on your head as a child or do you troll because you couldn't get laid even if you fell @ss-first onto a cock factory?

    Posted by: Little Kiwi | Feb 21, 2013 2:18:31 PM


  22. @Matt, I don't think there is any need for anyone to share any of their wisdom with you. You pretty much seem to KNOW IT ALL.

    Posted by: oliver | Feb 21, 2013 2:21:00 PM


  23. and i mentioned Ryan White because unlike a lot of the anonymous cowards who troll here pathetically (that would be you, "Matt") he refused to make distinctions between who "deserved" to have HIV and "who didn't"

    Posted by: Little Kiwi | Feb 21, 2013 2:22:40 PM


  24. Never mind all this garbage about destigmatizing HIV. It would be good to see some more *anger*. That's what ACT-UP was about, and Larry Kramer, right? "Stay angry," and all that? Here we are, a good 30 years after HIV arrived on the scene, and we are still infecting each other so often that 20% of us are HIV-positive. How about some anger at that total failure in prevention? HIV rates are increasing again after plateauing for years. How about some anger about that? How about some anger at those among us who are infecting others among us at the rate of 30,000 per year? How about some anger at ourselves for putting our own sexual desires ahead of each other's health?

    Posted by: Matt | Feb 21, 2013 2:25:14 PM


  25. or anger at people who blame "promiscuity" instead of unsafe sexual practices.

    don't do meth. don't freakin' "party". and use condoms. every time.

    Posted by: Little Kiwi | Feb 21, 2013 2:28:58 PM


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