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    Wednesday
    Sep072016

    Why I Keep Talking About AIDS

    I sent an email out to friends and family last week. I have posted about it on Facebook twice in the last two weeks. The posts get liked by my husband, my friend Leigh, and sometimes my friend Zach. They are otherwise ignored. Who wants to see "HIV and AIDS" in the middle of their social media feed? 

    (Yuck. Boring. Irrelevant. Someone else will do something about it. I don't have HIV. Also, give it a rest; it's 2016.)

    Yeah, so, it's 2016. People still have HIV and AIDS. Just like they still have breast cancer and Alzheimer's and multiple sclerosis. I see posts about those other maladies in my personal social media feed all day, every day. Someone's dad has early onset Alzheimer's; we should all raise money for his campaign. Someone I grew up with has breast cancer; their family is lovingly updating the blog about her treatments and size of the tumors. GoFundMe pages are as common as Onion articles these days, all in support of someone we love, admire, or just plain want to help. But, when was the last time you saw a GoFundMe page for someone's HIV treatments? I'll tell you when: fucking never. And it's not because no one has HIV anymore. We don't all get to throw a party for The End of AIDS and freak out like we did when gay marriage passed in the Supreme Court a couple years ago. Nope. People still have HIV. People are still dying in hospice, emaciated and half out of their minds (if not entirely). People are still trying to find the magical combination of meds that will keep them alive long enough to see their kids grow up and get married, or to get married themselves. We don't see anything about it because of shame. People are supposed to be ashamed that they tested positive. Ashamed that they had unprotected sex or used intravenous drugs. Ashamed that they're dying. And we perpetuate that shame as a society. Well, I want to talk about it. This is me talking about it.

    I know something about shame. I know a lot about it, in fact. I've spent the last eight years of my life learning how to climb out from under it. I know how it's passed along, how it becomes the norm in the context of our culture, our families, our religions. I know how it informs our beliefs about ourselves and others. I know how it wants us to keep things a secret.

    It is my personal belief that shame kills. And in order for it to really have power, it has to get us alone. I will not abide.

    I mentioned two of the known ways that one might contract HIV above. Sex and drugs, right? Pretty basic. Bodily fluids passed from one person to another, things that happen every day all over the world. I highly doubt that many people reading this haven't had unprotected sex. I'm not trying to make anyone uncomfortable, but I am trying to make the point that we all participate (or have participated) in the very action that passes the Human Immunodeficiency Virus to another person. Are we to feel ashamed of that? I don't see how. Seems to me that the world would have ended long ago if the act had not been performed time after time throughout history. It's just sex. 

    (But, it's gay sex. Weird, gay, public bathroom sex with strangers.)

    One more time: it's 2016. If the above thought has ever crossed your mind, that file is wildly out of date. It's not 1982. The illness is no longer called "Gay-Related Immune Deficiency," is it? No. They left GRID behind when they realized that the disease was not, in fact, isolated to gay men in public bathrooms (and even if it were, it would still be on all of us to find a solution). It has reached every corner of humankind. Every race. Every class. Every sexual orientation. Everyone. 

    Then, how come we're not all talking about it? 

    (Because the other people who have it got it from dirty needles. Heroin addicts.)

    Yes, and what about that? What about the pervasive disease of addiction? To tack onto my above statement about how we never (like, ever) see a GoFundMe campaign for anyone's HIV or AIDS meds: when was the last time you saw one for drug or alcohol treatment? I have never seen such a thing. And I know more people with the disease of addiction than I do people without. By an enormous margin. Most of my friends and loved ones are somewhere on the spectrum of the disease of addiction. And I've got news for you, whether you want to acknowledge it or not, the same is true for you. There isn't a more human issue. Yet, again, we are ashamed.  

    You might be thinking, "Well, so-and-so might have a drinking problem, but that doesn't make them a heroin addict. And certainly not a heroin addict who would use gross, dirty needles." And perhaps not. Perhaps everyone in your world is a beer alcoholic and gets their bills paid on time. Well, mazel tov. It's not that easy for some. The disease of addiction is progressive, you see. Like multiples sclerosis, it worsens over time, if left untreated. The behaviors become more extreme, the grip on life looser. Essentially, shit happens. And when it does, it's not my place to judge, you understand? It's my place to take care of myself and check my own stuff, but it's not my place to cast judgment. It's not my place to project shame. I think it's important to make sure none of us thinks we're some sort of higher authority. We're not. We're all just flailing around in this life, doing our best to cope and survive. The judgment game, while fun and tempting, is Lose/Lose. It divides us and it closes us off to the real human experience we're capable of. I don't want to miss it; do you?

    Once we've established that we're all imperfect humans, neither above nor below anyone else, we can get down to the business of the work. There's work to be done here. These illnesses, these social stigmas, these cultural patterns . . . they don't dissolve on their own. When left unchecked, I believe they grow larger than us. 

    Let's get back to AIDS. It was Freddie Mercury's birthday the other day, September 5th. He would have been seventy. Alas, he only made it to forty-five. I posted a photo of him and some words about how important I think his life and contributions were. People liked it, people wrote things about him being the best singer of all-time, or their favorite front person. No one talked about how he died. When David Bowie died, everyone talked about his cancer. Everyone praised his artful bravery and the way he chose to go out. They're still talking about how Prince might have died. The tabloids love to unearth new evidence that he was a prescription pill addict who probably overdosed. And I think that probably reads as Socially Acceptable because we didn't have to know he was a drug addict, right? We didn't see him OD over and over, and live in the Chelsea Hotel for ten years like Dee Dee. Prince kept it together like a good addict. Like your beer alcoholics who are never late for work. We champion that brand of addiction. And when someone dies with cancer, they practically become a saint. Pink ribbons are embroidered onto all kinds of clothing. They even have pink ribbon M&M's, for sobbing out loud. When someone dies with AIDS, there are silent judgments. Freddie has been dead for twenty-five years, and we don't talk about it. We don't talk about what happened in the end there. We don't talk about how Keith Haring, Robert Mapplethorpe, Herb Ritts, Anthony Perkins, and Rudolph Nureyev died. We celebrate their work, we praise their groundbreaking contributions . . . but we don't talk about the end. 

    (It's unpleasant. It's unnecessary. They're already gone. Just honor their work and let the rest be.)

    No. We need to talk about it.

    When we get into the habit of only supporting causes that directly affect us, we are essentially saying, "I don't honor another's suffering as much as I honor my own." Again, it divides us. And while I love to see activism and outrage about injustices in this world, it perplexes me that it seems to almost be a fad to be outraged. Like our emotional bandwidth can only reach so far for so long. If a police officer kills a black person, the internet is flooded with #BlackLivesMatter posts for roughly three days. Then it dies down. On to the next wave. Well, I believe that it's all connected. I believe that these events which horrify us are all part of the same problem. Shame. I'm looking for the longterm solutions. I'm looking for a life of participation. I'm looking to not be defeated by grief and loss and disappointment. It's so fucking disappointing that a radiant artist like Haring died at thirty-one years old. Did you know he was only thirty-one? When I think about myself at thirty-one, the kinds of work I was making, and where I was with my personal development, I can't imagine my story having ended there. I very seriously can't imagine it. And then I think about how Keith knew he was dying. He knew it. And instead of collapsing into the grief and shame of it all, he just worked around the clock. He made sure we knew just how much he had to offer. He worked to promote harmony and understanding. He worked to publicize the problem of HIV and AIDS. He worked to kill the shame that surrounds testing positive. That was 1991. The shame has not lessened at all. 

    * * *

    This is my twenty-fifth year of fundraising for HIV and AIDS programs. I started when I was sixteen years old. My friend Marsian and I participated in a Dance-a-thon for AIDS Action in Boston in 1992. We raised money, we danced for hours, we felt like we were part of the solution. In 1992, there was still a lot of energy around fighting AIDS. We'd only just lost Freddie the November before, Keith had only been gone for two years, and Rudolph passed the next year (and when he died, no one said "AIDS" aloud; they said "heart problems"). Boston and New York had (and still have) really kick-ass programs with celebrity endorsements, high visibility, and positive momentum. I did about a dozen walks in Boston and four in NYC. In both cases, they were massive, city-wide events. Whoopi Goldberg would be out there in Central Park, revving everyone up before the kick-off. All kinds of corporate sponsors would be there, handing out bags filled with information, Kiehl's sunblock, water bottles etc. Both cities' walks were ten kilometers, a commitment of both time and physical energy. It was always one of my favorite days of the year; I looked forward to it for months. All kinds of people would come out. I walked alongside families with kids and dogs, activists, teens, fabulous people in full drag, teams of people from different businesses, teams of people walking in memory of their lost loved ones, and people living with the illnesssometimes in very advanced stages. Whenever I'd see those folks, I'd take a personal moment and acknowledge their bravery. I'd pray that they might make it one more year and be at the following AIDS Walk, though I knew it wouldn't be so. The end stages of AIDS take everything.

    During my years in Boston and New York, I led AIDS Walk teams (complete with custom shirts and swag), put on a four day run of a rock opera which benefited AIDS Action completely, and made elaborate outfits to walk in (my favorite of which was a skirt that had "FAT BOTTOMED GIRLS" stitched across my ass in red sparkly letters, for Freddie). In 1996, I went to DC to volunteer for the last showing of the Quilt in its entirety, on the Washington Mall. I watched parents, siblings, children, and lovers visit the panels of their lost loved ones. I've never experienced such grief for people I didn't know. I was there to watch my designated section of the quilt, to fold it up and unfold it every day, and to protect it from anyone who was there to hatefully vandalize it. Can you imagine? It was like a holocaust monument—like a mass grave—and there were people who wanted spit on it. More shame.

    Most of my friends from those cities have walked with me at some point or another over the years. Or they were in my rock opera. Or they've donated. Over and over again. It's my cause. It's important to me, and my family of choice has honored that. 

    It's 2016 and I live in Nashville, TN. I moved here in 2008, right out of Brooklyn. I was ready to dive into activism here in my new city. It's been a very different experience. For starters, I don't have many friends here. I don't know why or how (and believe me, I've spent some time on the subject), but I don't. The friends I do have, do not share this particular value. No one has ever taken me up on my invitation to walk. Few people from Nashville have ever even donated to my fundraising efforts. People will contribute to my annual project for a local homeless shelter, but they will not get involved with any AIDS activism around here. And it's not just my friends, this whole city seems to turn a blind eye compared to other places I've lived. They do have a local AIDS organization, Nashville CARES, and they do what they can, but it's not supported by the community. I mean, how many celebrities would you guess live here? It's an unknowable number (and what's a celebrity, anyway?), but let's just all agree that there are hundreds and hundreds of individuals who have achieved some level of notoriety and/or financial wealth living in Nashville. Lots. Everyone from 'grassers like Alison Krauss to weirdos like Kid Rock, right? Nashville pride, they have. I can tell you with total certainty that none of them have lent their celebrity to the walk. They'll do benefits for cancer, and they'll perform at tributes for older musicians, but they're not doing a single thing for their local HIV and AIDS programs. Absolutely not. I've seen two performers invest their time and energy into the walk in recent years. Tiffany (yes, THE Tiffany from malls everywhere, circa 1987), and Ty Herndon. They're both rad as hell for performing . . . but it doesn't change the point that I'm making. Nashville wants no part of it. I registered a team this year, to celebrate my twenty-fifth year of fundraising. Not one person outside of my husband and myself has joined. And they likely won't. To say that I'm disappointed would be a huge understatement. I find Nashville to be a pretty disappointing place overall, but I'm here now, so I feel like it's still my job to work toward the solutions. 

    I keep Keith Haring in mind. I keep my disappointment in check. I'm alive and well, despite my lifetime of imperfect human behaviors. I'm lucky. If I found out that I had a year left to live, I'd want to go out like Keith. I'd want to glow with positivity, not hide away in the disappointment. So, since I don't have that deadline looming over me, I'm going to do just that. I'm going to keep talking about AIDS, but more than that, I'm going to keep talking about shame and how it holds us back. How it keeps us apart. We can do better.  

    I'll be at Public Square Park on October 1st, 2016, regardless of what ends up happening with the AIDS Walk team. I'd love to have some of my community around me, but I'll be with people either way. The people who show up every year are my community. And I'm always so glad to walk among them, even if they're strangers. They're still people who share my values and want solutions. They're promoting dignity and harmony and I'm so grateful they assemble, year after year. And when we get a clear, sunny day for the walk, I always look to the sky and say, "Thanks, Freddie!"