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Thirty Years of Stigma #HIV #AIDS

Thirty Years of Stigma #HIV #AIDS

It’s coming up on 30 years since the first AIDS diagnosis made it’s appearance in this country and changed the way we look disease forever.  We’ve gone from the panic of closing public pools because someone HIV positive swam in it, to HIV/AIDS being an enormous health crisis, to HIV being an also-ran in the news.  I like to consider myself a very educated, intelligent guy and I’m telling you I just don’t fucking get it.  Even though Elton John dominated most of the hour, Anderson Cooper’s special last night “Hope Survives: 30 years of AIDS” brought up a lot to talk about.  While they’re very different points, they all intermix to bring about my current confusion.

The Failure of Journalism:

  • According to the Kaiser Foundation in 1995, 46% of those asked responded that they felt HIV/AIDS was the nations most urgent health problem.  Fourteen years later just 6% of those asked said the same thing.  HIV news articles have dropped 70% in the same amount of time, and the general public goes on it’s merry way.  Gay/bi men have adopted a very blasé attitude towards HIV because nobody is stepping up to the microphone to tell them anything differently.
  • Along the same lines, LGBT bloggers are failing miserably when it comes to reporting on HIV despite their claims of being there to report LGBT impacting news.  Within in the community, name recognizable blogs have next to nothing on the subject.  I looked thru 365 Gay News, After Elton, Big Gay News, Box Turtle Bulletin, Gay News from Gay Agenda, Joe My God, LGBT POV, Out in America, Queerty, The Bilerico Project, Towleroad, and the Washington Blade for a mention of this special being on television last night and not one of them had a single word of it.  Zero, zip, nada.  Most of them found it newsworthy to keep regurgitating the YouTube video of Sarah Palin breathing though.  How can you run a website that’s for the gay community and not run a single piece of information on HIV?  The hypocracy is staggering, and it’s also sending a message:  There’s nothing to talk about on HIV, so be on your way.  We’ll let you know when it’s time to pay attention.  (NOTE:  The only website that really gets off the hook here is The Bilerico Project as they will occasionally run HIV related content).

That being said, gay journalists get a D minus in my book for their contributions as well as for contributing to the problem of complacency.  The power of using the media to create, shape and mold public opinion is being squandered by the mainstream media, and the LGBT uber-bloggers step over the dropped ball for whatever reason without a single backward glance.

Adding to the current “no big deal” attitude is the double-edged sword of medical advancements.  Dr. Fauci brought it up during the hour last night:  when he first gave HIV diagnoses to patients, their expected survival time was twenty six weeks – if that long.  These days, thanks to advancement in research newly diagnosed persons with HIV can expect approximately 50 years of continued health if the right steps are taken.  Faced with that knowledge, people come to the conclusion that being positive isn’t so bad.  So I’ll have to take medication – big, fat, hairy deal.  Right?

Um, no, that’s not right.  And there’s nobody at the microphone telling them what life is really like.  Gone are the days of being benched thanks to the AZT side effects, but current meds aren’t always drinks around the pool either.

The Scarlet “A”:

Three decades after the first diagnosis, and we’ve moved marginally closer to changing attitudes on being tested.  More often than not, a person doesn’t even know their status because they don’t want to know.  The message that’s still being sent out is “drug and disease free- you be too”, “clean only”.  People with HIV are being told that their disease is not acceptable, not welcome and in general they can expect to be shunned if they made the disclosure that they have HIV.

Why?  Why is HIV still being marginalized?  Would you even dream of telling this to someone with diabetes, asthma or cancer?

Back in the days when dinosaurs roamed the earth, HIV was a gay disease.  Gay men got it, and it was God’s punishment for they way they lived.  Then man created fire, and realized that gays weren’t the only ones getting it.  Straight people were getting it, seniors, kids, but there still was that lingering undercurrent that people got HIV because of the things they’d done (i.e., junkies, gay, promiscuity). The banner of “unclean” still hangs over those with HIV.  The morality police are still working full time, they just fulfill their duties undercover.  So, you have a three-fold problem:

1.  People aren’t getting tested.  They either think they’re immune from getting it (rarely), they don’t want to know if they’ve gotten it for fear of joining the unclean masses.

2.  People who do get tested and have it keep it to themselves.  Their shoulders aren’t big enough to carry the scarlet “A”, so they resign themselves to a self-imposed exile of fear and loneliness.

3.  People that do get it, and put it out in the open risk being turned into outcasts by the very community they hope to rely on.  The unspoken message of “you must have done something to deserve HIV, so I’m not interested” comes thru loud and clear.

Picking up the Reigns:

Ryan White is dead, and sadly he’s been gone for 20 years.  In his short time here, he did more to change the perceptions of HIV and AIDS than anyone before or since. He’d be 39 right now if he’d survived, just six years younger than me.

There hasn’t been a single person living with HIV to step up and fill his shoes since he died.  Not one.   The work he did putting a human face on HIV carried public perception thru the 90’s and when the echo of his message faded the tide of public interest went back out to sea with it.  There are scores of great activists out there right now, but none of them are commanding the national spotlight.  And it’s not for their lack of trying either.

What’s the fix?  To me it’s a simple one to talk about, but it’s going to be tough to put in play.

  • Journalists, especially the gay media, need to get with the program.  HIV isn’t going to sell a newspaper, but there comes a time when it’s not about a profit.  It’s about informing the public and the greater good.  Gay “journalists” need to get their houses in order and realize there’s a bigger world out there beyond giving webspace to the latest conspiracy theory against gays, the political “I told you so’s” and all the other bullshit.  You can’t call yourself a journalist if you routinely ignore a subject with the excuse of “there are other websites that’ll cover that”.  There are plenty of HIV related websites, but their readership generally doesn’t stop by until it’s too late.  There’s a responsibility that comes with a huge readership and you either need to embrace it, or hand it over to somebody that has the guts to do it.
  • To that end, the people who are ready, willing and able to put the message out on HIV need to be able to do so.  We have a battalion of media resources and not one of them is using the airtime to give to the activists that can get the point across.  Kudos to CNN and Anderson Cooper for last night’s broadcast, but I was severely disappointed that the activists with HIV were marginalized to about 10 minutes of airtime with the exception of Phil Wilson.  There’s a powerful message to be heard from those that have the disease and people will listen if somebody gives them the stage.
  • The morality police needs to go –period.  Gays, straights, the whole lot of you.  Anybody who thinks that discriminating against those with HIV need to be stopped dead in their tracks.  That’s only going to happen by a combination of correcting it on the spot when it’s encountered, and getting a message out there that’s going to change public perception.

Make no mistake:  HIV hasn’t gone away, and despite medical advances it’s just as much a problem now as it was thirty years ago.  There is no cure, and people still die from it.  If we don’t start turning around this complacency now, we’re going to be in trouble.  We’re already on that path, and nobody’s paying attention to the potholes in the road.

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