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The Beautiful Sadness of “Dallas Buyers Club”

Tuesday, October 22nd, 2013

Just because it’s over
doesn’t mean it didn’t happen…
Doesn’t mean it wasn’t beautiful,
even with the pain.

– “Beautiful Sadness,” sung by chanteuse and gay favorite Jane Oliver

In the first minutes of Dallas Buyers Club, the astounding new film about the darkest years of the AIDS crisis, rodeo cowboy Ron Woodroof (a gaunt and barely recognizable Matthew McConaughey) is punched in the face. He has it coming. The self-serving crook has a lot of enemies.

Credit Anne Marie Fox Focus FeaturesThe blood spills from his mouth and glows a bright crimson, an almost clownish contrast to his drained, ghostly pallor — which itself is evidence of a raging HIV infection he has yet to discover. Another gash on his forehead is a sickly collection of reds, and unlike most movies in which injuries disappear by the next scene, the wound remains. And remains. For many scenes thereafter, the blood on Woodroof’s forehead is in full view, a disconcerting reminder of what lies beneath, until you wish he would just put on a bandage already.

But Dallas Buyers Club isn’t interested in making the truth very pretty. A river of infected blood runs through it. So, too, does practically every other bodily fluid, along with bruises that won’t heal and purple skin lesions and flakes of dry, reddened skin. And that’s kind of beautiful. Because that’s what AIDS looked like in 1985, and it’s been ages since we have fully remembered it (this movie doesn’t concern itself with the modern day notion of “living with HIV,” since having the virus in those days typically meant an AIDS diagnosis and fast and efficient death).

I have never seen AIDS shown this way in a film. And of all the movie portrayals of the disease, from Parting Glances to I Love You Phillip Morris, nothing else has captured the ugly physicality of the disease like Dallas Buyers Club. Even the tearful hospital bed goodbyes in Longtime Companion seem overly romanticized by comparison.

The based-on-a-true-story concerns Woodroof, a hard living cowboy and drug addict, who must face certain death and the cruelty of his redneck buddies when he tests HIV positive. Woodroof also lives the sheltered life of a southern homophobe, so watching him negotiate the AIDS community terrain of queers and drag queens is fascinating viewing and provides some of the surprisingly plentiful humor in the film.

But Woodroof hasn’t successfully dodged the consequences of his petty crimes for nothing. He quickly cheats the system to acquire the poisonous medication AZT and, after an eye-opening trip to Mexico, he figures out how to profit from the sale of unapproved drugs to the throngs of support group members back home.

dallas photoAlong the way he allows himself a guarded friendship with a drug addicted transgendered salesperson, Rayon (Jared Leto in an effective and quietly humble performance), and eventually accepts to some degree the gratitude and generosity of the many gay people around him.

Nearly everyone in the story, patients and physicians alike, is a wretched outcast, damaged by drug addiction or homophobia or loneliness or their own destructive behaviors. No one is healed, no one fully conquers their demons, and no one gets out unscathed. The fact that the filmmakers make you root for every one of them is a testament to terrific storytelling and a vexing main character you grow to love and admire.

These characters also live a world away from the more sophisticated New York City activists that populate the Oscar-nominated documentary from last year, How to Survive a Plague. In fact, the big city AIDS battles being waged elsewhere barely register in this story about southern vice and ingenuity. When Woodroof and his rodeo buddies first learn of the death of Rock Hudson, the actor is dismissed as a cocksucker, except for one of them who doesn’t know who Hudson is. His buddies scoff. “Haven’t you ever seen North by Northwest?” one asks.

Woodroof’s entrepreneurial efforts ultimately create the Dallas Buyers Club, a real business that provided unapproved medications to very desperate people with AIDS. As someone who once used a buyer’s club to purchase Compound Q and other pharmacological footnotes in HIV/AIDS history, I can attest that everything from the cheap cinder block setup in the film to the anxious expressions on the customers felt tragically familiar.

dallas lab photoThe real villain in the story, other than the virus itself, would have to be the early, toxic drug AZT and its manufacturer. Although the film uses a fictional pharmaceutical name, let history show that AZT was produced by Burroughs Wellcome (eventually absorbed into Glaxo SmithKline), who downplayed side effects in a complicated rush by the FDA to have a drug, any drug, to treat the growing pandemic.

Matthew McConaughey is a revelation. His physical transformation alone would be Oscar bait were it not for his ability to gain our affections for such a self-serving swindler. Calling the performance free of vanity is an understatement. His harrowing depiction of living with AIDS makes the award-winning Philadelphia look about as realistic as Dark Victory. It reminds me of when we settled for scraps in Hollywood’s depiction of AIDS, when any major actor brave enough to play a gay man won an Oscar.

There is a moment late in the story during which Woodroof checks himself in the mirror before an evening out. Suddenly he finds himself staring, and in the dim bathroom light he sees the undamaged face of the man he might have been. He allows the slightest expression of pride, for the things he has accomplished, for those he has helped. And then, as those of us who lived through the 1980′s know so well, the face returns to a look of both hope and despair, of the beautiful sadness that always brought too many questions about the fate that was barreling towards us.

It is that face in Dallas Buyers Club, the one free of blood and injury, that is the most haunting of all.

Mark

(Photo credit: Anne Marie Fox / Focus Features)

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ALSO…

kick assFor those who survived the deadliest AIDS years of the 1980′s, there is a growing movement to address the kind of post-traumatic stress and “crisis of meaning” that has plagued many of us. Some of this comes as a response to the death of activist Spencer Cox last year, although it is a long overdue issue to be addressed. You might appreciate coverage of the New York City forum held earlier this year, “Is This My Beautiful Life?” (a video recap is here)or the more recent forum in San Francisco, “Kick ASS (AIDS Survivor Syndrome)” (with a video chronicle of the event here). My hope is for more forums like these in other cities, and an ongoing, programmatic response from service organizations to respond to these issues.

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Posted in Gay Life, Living with HIV/AIDS, My Fabulous Disease, News | 5 Comments »

The Inspiring Advocates of the 2013 U.S. Conference on AIDS

Monday, September 16th, 2013

At the recent 2013 United States Conference on AIDS (USCA) in New Orleans, the word “stigma” wafted through the event, in workshops and throughout the exhibit hall, like an annoying new pop song you couldn’t stop humming.

Mondo GrabThe Stigma Project. The Mr. Friendly campaign. The CDC “Let’s Stop HIV Together” media campaign. My own POZ Magazine stigma cover story issue (“The Sound of Stigma”), an indictment of gay community and the antipathy between positive and negative, sat in stacks at the POZ booth. Panel discussions and workshops were held on identifying stigma, combating it, living with it. If Lady GaGa would only record an anthem about it, she could finally knock Katy Perry off the charts.

But there’s good reason for it. As Peter Staley (How to Survive a Plague) said in a session of people living with HIV, “One of the biggest generational shifts that I find most depressing is that most of the stigma we deal with now comes from within communities.”

In my video blog recap, you’ll meet as lot of people addressing this issue in various ways. You’re also going to meet advocates of both the celebrity variety (Mondo Guerra of Project Runway (photo at top), and photographer Duane Cramer) and those doing the work on the ground in communities large and small. As usual, it was the people and their personal commitment that caught my attention, and this recap is a salute to their efforts.

The generational differences Peter Staley spoke of is also a curious new bend in the culture of HIV. Once upon a time, our communal experience of AIDS, at least as gay men, was much the same. Our lives were bound in the sameness of death, despair, and then, hope. But since then our generations have separated, with younger gay men less traumatized or fearful about the virus, and (too Xanax many) older gay men judging them for behaviors and mistakes we ourselves made in our youth. This too is a subject ripe for conversation, with writers like the irritatingly young Tyler Curry broaching the topic, and public forums springing up to address the matter of post-traumatic stress among “the AIDS generation,” which I suppose means me.

To some, conferences like USCA represent “AIDS, Inc.,” or a waste of resources that feels self-congratulatory and a poor excuse for plane flights and rubber chicken plenary lunches. I disagree. If the pharmaceutical industry, highly visible and paying much of the tab at events like these, wants to underwrite sessions while promoting their key messages and products, they can be my guest. Conference attendess are sharp enough to take what they need and leave the rest, and the pure energy and support between those doing the work is worth the cost in my mind.

As Paul Kawata, of the National Minority AIDS Council, the producers of the event, said to me, “If we can inspire people to devote one more to year fighting this epidemic, I feel like we’ve won.”

Thanks for watching, and please be well.

Mark

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PLUS…

MarkTimeMachineGrabI have the privilege of presenting “Mark’s Poz Time Machine” at a retreat for poz men in Montana this weekend, hosted by the Montana Gay Men’s Task Force. I really enjoy this presentation, which is an interactive walk through the history of of HIV/AIDS, from 1981 to the present, using video clips and photos, my own story, and drawing upon the life experiences of participants along the way. From my pre-AIDS win on The Price is Right to the tears of the mid 1980′s and then a re-established HIV culture, it allows everyone to contribute some powerful storytelling and a shared history. If you would like more information, contact me. I come cheap.

Posted in Gay Life, My Fabulous Disease, News, Prevention and Policy | 5 Comments »

The Real Poz Guys of Atlanta III

Tuesday, September 3rd, 2013

Why Andy Cohen isn’t badgering me with phone calls to bring this series to Bravo, I’ll never know.

Nearly four years ago, I invited four friends living with HIV over to my place for a night of devouring brownies and sharing secrets, while my friend Charles captured it on video. The result was “You Gotta Have Friends,” the first episode of what would be renamed “The Real Poz Guys of Atlanta.” The second episode was posted more than a year later (you can see a recap and both previous episodes here). And now, episode three.

These guys must be getting the hang of this, because we discussed and revealed things like never before. From crystal meth addiction to our mothers, nothing was off limits. There’s even a (NSFW-ish) chat about tops and bottoms and modern gay sexual politics. And dealing with loss. And reaching out for help when you really need it.

Real Poz Guys PIC 2013I’m not going to lie, I’m proud of this video. It’s clear that my editing skills have improved since our first episode along with the group’s ability to keep it real. More importantly, the video series represents a lot of issues I feel passionately about – combating HIV stigma with honesty about our status, the crucial importance of social support, and living joyfully. That, and I love hearing my friends talk dirty for a good reason.

I really hope you share this one with your friends and networks (select one of the share features below). I think it represents what this site does best. And judging from the emails I receive, there’s a real need for people with HIV, particularly the newly diagnosed, to know that life, and friendship, doesn’t end with a positive test result.

I look forward to your comments! Thanks for watching, and please be well.

Mark

(The Poz Guys pictured above are (left to right) James, myself, Antron, Eric, and Craig. I’m the only one who isn’t single; I know they would appreciate me mentioning that.)
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PLUS…

day with HIVOur friend Jeff Berry from Positively Aware has announced the fourth annual “A Day with HIV” photo campaign, and this project is so cool – and so damn easy to participate in – that I tramadol dosage for dogs want to challenge you to just do it. It works like this: they collect photographs and captions from hundreds of people from a single day, Saturday, September 21, to help the world better understand the trials and triumphs of living with HIV. Some are artsy, some are simple photos (like the 2012 submission from Jason Zupke at right). Select photos will appear in the November/December issue of Positively Aware, and all of the photos submitted will appear on the campaign’s website. Give it a click to find out more.

atlanta pride picIf you are anywhere near Atlanta this October 13, would you like to join me in my role as a Grand Marshal for the Atlanta Pride Parade? When I learned of this honor recently, I knew I needed to share it with friends like you or else my ego might blow my head open halfway down the parade route. I’m asking people living with HIV and our allies to walk beside my car (I’m hoping for a red convertible!). I would love a message of solidarity and support for people with HV, and anti-stigma messages like “I love my Poz boyfriend!” and “HIV Educated – UB2.” The first 20 people to show up will get a free HIV POSITIVE t-shirt provided by AIDS Foundation Chicago. I’m excited to already have the support of The Stigma Project and the CDC’s Let’s Stop HIV Together campaign. To get the latest details, go to Facebook and join the My Fabulous Disease page. See you then!

uscaThe United States Conference on AIDS (USCA) is in New Orleans this weekend. I love this conference, because it provides skills building for people working on the front lines in community based organizations and public health — exactly where I spent a lot of the early years of HIV/AIDS. Anyway, I’ll be video blogging from the event and providing you the sights, sounds and people who are making a difference. If you happen to be there, please join me for a panel presentation this Sunday morning at 10:30am, when those of us participating in the CDC’s “Let’s Stop HIV Together” campaign discuss living with HIV and our commitment to HIV prevention.

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Posted in Family and Friends, Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease, News | 3 Comments »

A Cure for AIDS: The HIV Advocates Turning Hope into Action

Monday, June 24th, 2013

My first “AIDS job” in 1987 was at the first AIDS organization in Los Angeles, LA Shanti, and we provided emotional support to clients with AIDS who were usually in their last weeks of life. The intimacy our trained volunteers experienced with the dying, helping them find some inner peace as they left us, is worthy of its own blog posting sometime. Let’s just say it was intense.

We hoped for a cure early on, and then our hope faded. Before long, we didn’t dare hope any longer. We just wanted treatment to ease the suffering and slow the dying, and those prayers were answered in 1996 with the advent of protease inhibitors. It seemed greedy to tempt the fates and begin asking for a total cure again.

But greed isn’t what is driving the treatment advocates you are about to meet in my latest video blog. Far from it. They have faith, based on scientific research and some hopefulness of their own, that a cure for HIV disease can be found. And they care enough about our community to keep pressing the issue at HIV research conferences.

They are cautiously optimistic. But their faith is contagious, if you’ll pardon the choice of words. And they also know that that we got protease inhibitors because of the same kind of tireless community efforts that they are displaying now.

In fact, one can easily connect the dots from the activists shown in the Oscar nominated documentary How to Survive a Plague to this current crop of treatment advocates who are trying to take HIV research across the finish line.

You can take part in all of this, of course. To volunteer for a clinical trial or see what might be happening in your area, visit ResearchMatch.org or ClinicalTrials.gov. If you’d like to join the advocates in their work or follow their progress more closely, check out the AIDS Treatment Activists Coalition.

I’d like to thank the always resourceful Nelson Vergel for gaining me access to a gathering of these community activists. For updates of current cure research, Nelson has excellent posts on TheBody.com like this one.

I’d like to thank those who participated on-camera: Jeff Berry from Positively Aware, Jeff Taylor of the AIDS Treatment Activism Coalition, Moises Agosto of the National Minority AIDS Council, Steven Wakefield of the HIV Vaccine Trials Network, David Evans of Project Inform, and poz activists Mark Hubbard and Matt Sharp.

Thanks for watching, and please be well.

Mark

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Posted in Gay Life, Living with HIV/AIDS, My Fabulous Disease, News, Prevention and Policy | 6 Comments »

The Trouble with Praising HIV Negative Gay Men

Thursday, June 20th, 2013

National HIV Testing Day is next Thursday, June 27, and there is no better time to praise the many HIV negative gay men who are making smart decisions to remain that way. Hooray, HIV negative gay men! Let’s show some love for our negative brothers, who’s with me?

Oh, Lord. Now I’ve done it. By showing support for negative guys, I am clearly demeaning HIV positive men. But wait! I’m HIV positive myself. So, that must mean I’m being sarcastic in my support of negative guys, because there’s so little room for sincerity and goodwill in the chasm between HIV positive and negative gay men. That space is already so crowded, what with all the stigma and simmering resentments.

Some days I just want to go back to bed.

When I produced the quick video above three years ago, my intent was to celebrate the accomplishment of any gay man who is sexually active and has managed to remain HIV negative. It was produced by myself and my gay, HIV negative older brother to spread a little love across the viral divide and encourage HIV testing. That was it. No other agenda.

While initial reactions to the posting were quite good from both HIV positive and negative people, the pendulum swung quickly. Comments began to label my overly theatrical style (ouch!) as sarcastic. Some found the message demeaning to positive people. Some found the message demeaning to negative people. My goodwill became shrouded in a fog of distrust and what-about-me?–ism.

You can watch and decide for yourself (now that I’ve tainted the thing, darn it). But I stand by my sincere intentions to offer a hearty pat on the back to HIV negative men and support for their personal set of challenges and anxieties. I hope you’ll share it with an HIV negative friend you care about (the direct YouTube link is here.)

I would do it differently today, however. At one point in the video, I suggest that negative guys might like to have unprotected sex, but that they shouldn’t “do that.” That’s an outdated and judgmental mandate. Today, with new tools such as pre-exposure prophylactic treatments, and new understandings about what it means to be HIV positive and undetectable, what constitutes “safer sex” is a much broader list than simply whether or not you engage in sex with a condom or not.

Or, as I like to say, your mother liked it bareback.

Oops. I stepped in it again. Release the Kracken!

Mark

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PLUS…

The annual HIV Cruise Retreat is in its last stages of booking, and it will be the largest group of HIV positive men and women the cruise has ever had aboard. Even though the cruise does not sail until early November, several cabin categories have sold out. If this is something you are considering I would urge you to contact Design Cruise Travel NOW for information. I have the pleasure of being the MC of this trip again this year, but I receive no compensation other than a cheaper rate on my cabin. I do it happily because I am in favor of anything that builds community among people living with HIV. Check out my video blog posting from last year!

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Posted in Gay Life, Living with HIV/AIDS, My Fabulous Disease, News, Prevention and Policy | 3 Comments »

How ‘The Denver Principles’ Changed HIV/AIDS — and Healthcare — Forever

Thursday, June 6th, 2013

You must know this, because it matters. Because it has already changed your life, no matter who you are, and you may not even realize it. Because as we search for a new national voice for people living with HIV (since the ugly demise of The National Association of People with AIDS), and as LGBT community leaders pledge to re-commit themselves to HIV issues, the voice of people with HIV matters more than ever.

That isn’t about a vague concept. It began at a very real meeting, which gave birth to a very real, tangible document. And it happened exactly thirty years ago this month.

Michael_CallenIt was 1983. Just a year prior, Acquired Immune Deficiency Syndrome (AIDS) became the fearful nameplate for the murderer of gay friends and lovers. The virus that caused it, HIV, had only been identified a few weeks earlier. Amidst this atmosphere of unremitting grief and fear, a group of activists met in Denver as part of a gay and lesbian health conference. Among them, a dozen men with AIDS. And among their number, the inspirational Michael Callen of New York City, pictured at right, and safe sex architect Richard Berkowitz (Sex Positive), the only surviving member of the group today. They were about to do something that would change our response to AIDS — and health care in general — forever.

As the conference drew to a close, the activists asked to address the attendees. Rather than having a report presented about the state of the AIDS crisis, they wanted to speak for themselves. If the word “empowerment” hadn’t yet been a part of the health care lexicon, it was about to be.

AIDS TIMEThe group took turns reading a document to the conference they had just created themselves, during hours sitting in a hospitality suite of the hotel. It was their Bill of Rights and Declaration of Independence rolled into one. It would be known as The Denver Principles, and it began like this: “We condemn attempts to label us as ‘victims,’ which implies defeat, and we are only occasionally ‘patients,’ which implies passivity, helplessness, and dependence upon the care of others. We are ‘people with AIDS.’”

The seminal moment in AIDS activism was arguably those few minutes, when the principles were outlined by these brave “people with AIDS.” Identifying themselves as such, that alone, was startling at the time. How could they not be seen as anything but victims of an arbitrary and cruel killer? But they would have none of it. And they did not stop there.

They outlined 17 principles that covered everything from health care decisions to civil rights to sexual conduct. And their impact on all of us is so obvious today it can easily be taken for granted. Please honor their service and read on.

MarkDrMorrisThey demanded that physicians see their patients as “whole people,” and provide “accurate information.” They believed their opinion on their care should be awarded equal weight, and this was revolutionary. The next time your doctor consults you about a change of medications or whether a diagnostic test may be required, you can thank The Denver Principles.

They asked “all people” to fight against AIDS discrimination in the workplace and in housing, which was a provocative concept in the fearsome days of 1983 when people recoiled from those with HIV.

Astonishingly, they even advocated for “as full and satisfying sexual and emotional lives as anyone else” for people with AIDS. Imagine that, at a time when a new blood- and sexual contact-driven disease was in full bloom, a group of people suffering from it wanted sexual rights. Amazing. And yet today, if you are HIV positive and disclose your status to potential partners without feeling like a diseased pariah (or you have observed sexual evolution, like serosorting and sex clubs for positives), you can thank The Denver Principles. For that matter, if you’re HIV negative and negotiate sex with partners of any stripe, you can thank the Principles for believing that we all deserve a satisfying sexual life.

While gay men were the designers of the document, The Subversive Librarian notes that this was a situation in which lesbians and gay men worked together really effectively. As Walt Senterfitt wrote in 1998: “Part of the widespread acceptance of the notion of self-empowerment must be attributed to lessons learned from the feminist and civil rights struggles. Many of the earliest and most vocal supporters of the right to self-empowerment were the lesbians and feminists among the AIDS Network attendees.”

A clear line can be drawn between how all of us participate in our own health care decisions and The Denver Principles. It has influenced the doctor/patient relationship in every disease category, benefiting millions of patients.

sean_strubWhen longtime activist and POZ Magazine founder Sean Strub delivered the keynote speech at the Campaign to End AIDS’ 5th Anniversary event a few years ago, he devoted his powerful remarks to the historic importance of The Denver Principles and announced a plan to create a Denver Principles Empowerment Index that will hold AIDS groups accountable to the people they serve. That sort of work continues today, with plans underway to conduct a “Stigma Index” survey in the United States, measuring levels of HIV stigma and employing people with HIV in the process.

Sean knows a thing or two about accountability. When I worked for various AIDS organizations through the 1980′s and 90′s, we were shaking in our boots each year when POZ Magazine produced their chart outlining which of the country’s AIDS organizations met certain criteria. The chart rated things like financial transparency, the cost of fund raising, and how many HIV positive people served on the Board (for which, by the way, you can thank The Denver Principles, which demanded people with AIDS “be included in all AIDS forums.”)

The Empowerment Index that Sean and others are creating (he’s open to input) would chart similar criteria for AIDS organizations and other health care providers, by measuring the degree to which their clients feel empowered and involved in their own decisions. It would tangibly rate things like fund raising, transparency, HIV+ representation and the delivery of services.

So the Denver Principles live on. A list of profound basic rights were outlined during the dawn of this epidemic that continue to have an impact on us today. Anyone facing a chronic illness should laud the amazing journey and profound importance of this document.

Mark

(This is an updated version of something I posted in both 2010 and 2011. But as a man who blogs about living with HIV — and for you, reading my content — The Denver Principles and what they represent are that important. Are they outdated, since most people living with HIV today have never heard of them? I don’t believe so. I wasn’t around for the creation of the Bill of Rights and might not be able to recite them all to you, but I sure do want my leaders and governance using them for guidance. — Mark)

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ALSO…

As we enter June and all of the various Gay Pride festivities around the country, let me offer this gentle reminder that pride is about a lot more than drink tickets and cover charges and body image. Yes, that’s easy for me to say, since I’m as guilty as the next guy about my GYM OCD and aging fears — and Gay Pride only worsens my anxieties. I’m working on it. BUT. Back to you. I hope you will take three minutes and watch my “Gay Pride PSA” that I post each year around this time. If you haven’t seen it, it’s very funny. Well, until it isn’t. And it leaves you with a message I hope you will carry through this month and share with your friends. Check it out!

If, on the other hand, you prefer to leave the emoting to actual theatrical professionals (haters!), then you might really enjoy a five-minute highlights compilation from the one-night-only re-staging of David Drake’s important play on being gay and early AIDS activism, The Night Larry Kramer Kissed Me. Only 600 very lucky people could be seated in the hottest ticket in town that night (my ticket, and my plane fare and hotel and entourage, were evidently lost in the mail, and I’m firing my assistant), but now you can get a glimpse of some of the magic witnessed that evening. The most moving moment? Seeing that angry lion himself, Larry Kramer, in a photograph with Drake after the performance. It reminds me of one of my favorite buttons from the 1980′s: “Annoy them… SURVIVE!”

In the “Gratitude for Our Privileged Lives” department, how about the amazing David Phillips, a long time poz activist from Maryland who has been crisscrossing Kenya with a group of students and their professor from The George Washington University School of Media & Public Affairs. “On June 4 we visited with Mama Beatrice and several of the people living with HIV whom she has aided,” David said in a Facebook posting. “The stories of discrimination and stigma which they shared were jarring for the students to hear.” Most humbling to me, though, was this: “Some of these fellow HIVers were shocked to know that mzungus (white people) get HIV, too,” David said, “and all were excited to meet someone thriving in the face of HIV for over 10 years, amazed by 31.” Are you feeling blessed right now? You’re welcome.

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Posted in Living with HIV/AIDS, My Fabulous Disease, News, Prevention and Policy | 3 Comments »

The Fabulous Wizard of POZ

Wednesday, May 29th, 2013

Every month or so, a group of people in my area host “poz socials,” a house party for people living with HIV. I found myself at one recently, because I thought it was important to make an appearance since becoming a literary superstar.

I was settled into the living room sofa and liked the spot very much. Sharing a couch with regular folk has an air of humility about it, while its angle allowed me to be viewed by a large number of the guests milling about.

The man next to me leaned in closely to be heard over the hubbub of the party. “Are you on the cover of that magazine…?” he asked, of course.

I should proceed with caution, I thought. If he is a stalker and I engage him haphazardly, he’ll steal my social security number and soon claim we’re Minnesota’s latest newlyweds.

“Well now, what magazine do you mean…?” I said, and then I smiled demurely. It’s best to display warmth when you are recognized in public. But carry mace.

“The magazine you’re holding in your lap…” he said, “with the cover facing me? I saw some copies on a table at the front door, I think. That’s you, right?”

“Oh, this magazine!” I said, waving it in my hand as if I’d just discovered it, “yes, well, they’re sending me so many you know, boxes of them, I just thought people might appreciate me bringing a few of them to –“

“…and there’s a stack of them in the bathroom, too,” he continued, “which I thought was odd, and outside on the back lawn. Someone laid them across the grass to spell out OZ. Is this magazine about The Wizard of –“

“No! POZ.” I fingered the cover’s masthead like I was teaching the alphabet on Sesame Street. “P-O-Z? POZ. POZ Magazine.”

“Well, it just says ‘OZ’ in the back yard now. I think they had to make room for the lawn chairs.”

This man was irritating me. He hadn’t even begun to ask about my thoughts on fame or on balancing family with my public persona or about Having It All. I became concerned with his comprehension skills.

“I wouldn’t worry about it,” he went on, “it’s sprinkling now so I don’t think anybody is out there anyway.”

“It’s what?” I asked. I scrambled up and dashed outside to retrieve what were now slightly soggy copies of the magazine off the lawn.

I settled for a while on the back patio, carefully dabbing the magazine covers and giving the crowd inside some relief from the excitement of my presence. I wondered if the Kardashians ever had to dry their own magazines. I suddenly realized how very alike we are, those girls and I. Well, maybe not Kim. Unlike her, my sex video was a crystal meth-induced camera phone escapade that I have refused to commercialize. No, Khloe is my true soul mate. The sassy one.

The party’s host, Sebastian, stepped outside.

“Hello, Sebastian. You have a lovely home,” I offered. Graciousness. So important. “I wonder if I might trouble you for some ballpoint pens. The Sharpies I brought are going to bleed if I have to autograph these wet magazines…”

“I was just going to ask you about that,” he said. “The buffet table seems to have been set up for… some sort of signing?” I had arrived early to hang the poster-sized blowup of the cover in just the right spot, scotch taped over Sebastian’s original Keith Haring lithograph. The Haring seemed a tad pretentious anyway.

“Yes, that’s right,” I answered. He had an expression that I clearly mistook for annoyance.

“There are magazines stacked all over the buffet table,” he said.

I raised an eyebrow. “I brought plenty to accommodate the crowd so –“

“There are only fifteen people here…”

“…so they might be able to share with their friends and loved ones,” I finished.

Sebastian breathed a little too strongly through his nostrils for a moment. “If it’s all the same to you,” he said, rather slowly, “I really need the buffet table.”

“You need the buffet table?” This was the first I had heard of this. I bet Khloe has people for this sort of thing.

“Yes,” he said. “I need the buffet table. For the buffet.

Jealousy is a common response to intense fame. You see it all the time. Well, maybe not you. But I do.

My road to sizzling celebrity began a few months ago, when I was invited to appear on the cover of POZ Magazine because of an essay I had contributed about HIV stigma among gay men. I give full credit to the staff of the publication, for instinctively knowing exactly what the world needs right now.

And if you’re thinking the answer is me, well, that’s lovely and understandable but not really true. What the world needs now is a message of tolerance toward people living with HIV.

Delivered by me.

Negotiations between myself and the publication were heated, I will admit. First they claimed Leibovitz was busy and Scavullo was dead, and then they rejected my request for body painting at the studio to sculpt my abs. Oh, and I had to wear a shirt.

I don’t mean to embarrass anyone, but allow me to share with you portions of the email I received from the POZ editorial team. They responded together, they said, to put a stop to my “playing staff members against one another and telling us each that you liked us best or that a fellow staff person wanted us fired.” Like I would be caught doing that.

They then went on to say that “while we appreciate your enthusiasm for this cover shoot, we don’t believe that having you pictured in the throes of actual stigmata would serve the story or our readership.” My concept was meant to be ironic, although I can’t really explain why and it’s my response to most situations in which I don’t get my way.

“And although we do acknowledge that Carrie is an iconic film about stigma,” the irksome memo continued, “our readers might respond unfavorably to a cover model with a bucket of pig’s blood dumped on their head. People with HIV are sensitive about blood. Even pig’s blood. Your being outfitted in a prom dress does little to minimize the impact.”

They said nothing about the remake of Carrie to be released this fall, and the obvious promotional tie-ins I had outlined in my proposal. Which is all to say that we must stand tall against those who wish to blunt our artistic vision.

Now that the June issue has been released, available everywhere fine periodicals about HIV are available, I’m mulling over the idea of a multi-city tour or better yet, an AIDS benefit in which famous artists recreate my POZ Magazine cover, people like Peter Max or Warhol, and then auction them off. The powers that be at POZ, as you might guess, say this idea is quite impossible for reasons they refuse to enumerate.

I considered all this as the poz social was drawing to a close and I was slipping copies of the issue under the windshield wipers of the cars on the street. Face down, of course, so my face might greet the driver as he settles in his seat. I continued up the neighboring blocks, because good literature appeals to everyone and Sebastian was giving me attitude about the boxes of magazines he claimed were blocking his driveway.

Should you care for a personal appearance at your next gala, by all means contact me. I require the usual fees, plus Perrier water, Intelence, Norvir, Isentress, and Flomax. And please find me a sizable entourage, to do entouragey things with me.

If it’s good enough for Khloe, it’s good enough for me.

Mark
————————————————————–

My friends,

All kidding aside, I could not be more humbled and heartened by the response to my POZ Magazine essay on HIV stigma and gay male community. Even if you have read the piece, I would encourage you to visit the comments section on the POZ site — now with over 100 comments that will inspire you, anger you, and break your heart.

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Posted in Books and Writings, Gay Life, Living with HIV/AIDS, My Fabulous Disease, News | 8 Comments »

The New National Voice of People with HIV is…

Friday, May 24th, 2013

At a recent town hall forum in Washington, DC for people living with HIV, the very idea of what it means to be positive — and who is our national voice of advocacy — was questioned. With the demise of The National Association of People with AIDS (NAPWA) earlier this year, it’s an important conversation to have.

The forum, sponsored by the Federal AIDS Policy Partnership, a coalition of AIDS-related organizations and interests, didn’t bear much fruit in terms of hearing the feedback of people living with the disease. The event was lightly attended in person, with most of those living with HIV present representing some organization or another, and the online viewers had technical problems and, presumably as a result, contributed very little.

The most compelling minutes of the event, to me at least, were courtesy of the sheer audacity of former administrators from NAPWA (like Frank Oldham, pictured above), who made a pitch for their new HIV advocacy venture. After bankrupting a multi-million dollar agency and charges of financial malfeasance, you’d think they would opt for a lower profile. In this video episode of My Fabulous Disease, I take them to task and even provide a dramatic reenactment of some of their organizational negotiations. I can’t wait for you to see it.

The day following the forum I attended a scheduled meeting of the the Federal AIDS Policy Partnership (FAPP), and heard excellent presentations on the state of Ryan White during healthcare reform (iffy but hopeful), and how we as people with HIV can best navigate Obamacare (tip: go directly to www.HIVHealthReform.org and get educated).

In light of the town forum they hosted, I also strongly encouraged FAPP to add seats on their body specifically for people with HIV — or for representatives from coalitions for people with HIV — so there would be voices of people with HIV that wore no other hats or were tied to other agencies or agendas. I look forward to giving you an update on whatever steps they might take in this regard.

Thanks for watching, and please be well.

Mark

p.s. Frank Oldham has resigned from his position with Pozitively Healthy. Should other NAPWA officials involved in the new endeavor follow suit?

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Posted in Living with HIV/AIDS, My Fabulous Disease, News, Prevention and Policy | 7 Comments »

HIV and Gay Media: The Vanishing Virus

Wednesday, February 27th, 2013

The turning point could be traced to August of 1998. It was the month that, for the first time in well over a decade, the Bay Area Reporter did not have a single AIDS obituary submitted for publication. The promise of protease inhibitor medications had been realized, and it felt for many that our long community nightmare was coming to a close.

The milestone in the life of San Francisco’s LGBT newspaper was celebrated around the country and became a media story unto itself. “AIDS Deaths Take Holiday,” trumpeted the Pittsburgh Post-Gazette. “For Once, No AIDS,” said the Wilmington Morning Star. The headline in the Spokesman Review assured us that “No News is Good News.” The Bay Area Reporter’s own front page carried two words in enormous type: “No Obits.”

That could be seen as the moment in which coverage of HIV in gay media began to fade.

Today, the LGBT community is celebrating other milestones with joyful regularity. The right to serve openly in the military. Marriage. Growing acceptance and political muscle.

HIV/AIDS has largely moved off the front page and out of public consciousness. Despite newsworthy data such as increased HIV transmission among gay men and the ongoing slaughter of gay black men in particular, those stories feel stale. It has all been said so many times before. Even new storylines, such as Pre- and Post-Exposure Prophylaxis, cure research advocacy, and tools on the horizon such as rectal microbicides, it’s become harder to capture the imagination or interest of the gay community. When new data was reported recently showing that half of the 20-year-old gay men today will have HIV by the time they’re 50 (and if they’re black, that figure rises to a whopping 70 percent), the news barely rated a tweet or newspaper item.

What, then, is the responsibility of LGBT media in this climate of rising infection rates and a bored readership? Are they simply reflecting the community’s waning interest, or do they have a responsibility to keep HIV in the headlines, to serve as advocates for better public awareness?

I was just in the perfect place to ask these questions: The 2013 LGBT Media Journalists Convening, held in Philadelphia and sponsored by the National Lesbian and Gay Journalists Association. About 100 media professionals, including a healthy dose of bloggers like myself, attended the event, which educates LGBT journalists on various issues so they we might report on them with more authority. Those issues this year were transgenders, immigration, aging, labor, and international rights.

The absence of HIV/AIDS wasn’t lost on me, I assure you (AIDS activists called them out about this in real time in the event’s Twitter feed at #LGBTmedia13) and it became the topic of my interviews with various people in attendance. Their very personal answers – and undeniable passion for the cause of HIV in many cases – sure made it a little easier to understand the tough choices they are making every day. I will be very interested in your reaction.

Aside from my griping over HIV coverage, it really was terrific to be in the company of a lot of dedicated journalists, and I appreciate very much the work done to mount the event, including the contributions of Bil Browning of The Bilerico Project (pictured with me above, at right).

Is sparse HIV coverage just a sign of the times? Is it progress? And what can we do to increase visibility again?

The journalists in my video provide some answers, but I especially liked the observation by gay political activist David Mixner, who reminded me that coming out, whether as gay men or as someone living with HIV, is the greatest tool in fighting stigma and helping people see the importance of the issue. I’m glad I have some company in the poz blogosphere, but we can always use more voices. Anyone who has the ability to share their story, online or across the dinner table, can make an awesome contribution.

Meanwhile, I’m going to keep nudging my LGBT media colleagues, and I encourage you to do the same.

Thanks for watching, and please be well.

Mark

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Posted in Books and Writings, Living with HIV/AIDS, My Fabulous Disease, News, Prevention and Policy | 7 Comments »

The Increasingly Strange Case of Uncle Poodle

Monday, February 18th, 2013

In the course of a few short months, Lee Thompson (“Uncle Poodle” to reality TV watchers) has managed to personify a variety of hot button issues among gay men today. He has come out as gay and HIV positive. He has sent an ex-lover to jail and sent nude pictures via Grindr.

Or not. Depending on whom you believe. Let’s break down the strange case of Uncle Poodle.

In what we can all agree was a positive development, Thompson publicly came out as gay last year and evidently has the love and support of much of his family, the colorful clan of the TLC reality show “Here Comes Honey Boo Boo.” He instantly became an ally and friend of gays everywhere. So far, so good.

Then, in a recent interview with the Atlanta gay magazine Fenuxe, Thompson made the announcement that he tested HIV positive in May of 2012. What was startling, though, was his explanation of his infection. Thompson claimed that not only had an ex-lover knowingly infected him, but that the man is currently serving a five-year sentence for non-disclosure of his HIV status (an example of what is known as HIV Criminalization).

Almost immediately the details of the story were questioned (by everyone except Fenuxe magazine, which did not delve into the prosecution in their piece; the writer simply “applauded” Thompson’s bravery). Journalist Todd Heywood posed serious questions about the case, including the timeline between Thompson’s infection and the reported prosecution, which would have happened in mere months. Heywood also scoured court records from Georgia to Alabama and could find no evidence of any such case. Requests for more information from Thompson’s people have garnered no response. The defendant has never been identified.

Did Uncle Poodle lie about sending the ex-lover to jail? And why the hell would he do that?

It is my opinion that Thompson made up the prosecution story. And in doing so, he behaved in much the same way that most everyone does who tests HIV positive these days. He looked for someone else to blame. He played the innocent victim. He released himself from personal responsibility.

Because everybody knows that when you test HIV positive, you don’t call your doctor to start treatment. You call the police to press charges.

Stigma is driving these actions, of course. People who become positive today are judged for being “bad,” for not following the rules, for failing the community and becoming one of the great unwashed. It makes no difference that they were simply caught being human, that they let down their guard for a moment or got drunk or didn’t care or stupidly fell in love. Their friends will furrow their brows. Their dating life will wither.

And so, someone must pay for these indignities. That is one reason HIV criminalization laws have prospered – they appeal to our sense of vengeance. They are also vessels of homophobia, sexism and racism, considering how badly the laws are applied and how often prosecutions run counter to public health or even common sense (some convictions have imposed jail time for decades even when condoms were used and no one was infected, and advocates believe people forgo HIV testing in fear of being prosecuted). Conservative lawmakers and prosecutors — who don’t believe people with HIV should be having sex at all — are more than willing to exploit our feelings of revenge when testing positive so they can lock up some diseased fags.

I empathize with those who test positive today. They suddenly find themselves on my side of the viral divide, and for some, their hearts and minds may not have made the crossing yet. Perhaps they have unresolved issues about becoming infected. Whatever their circumstances, testing positive is a major life event and I can understand if some have an impulse to lash out.

And I believe that Lee Thompson did exactly that when he reported sending the man who infected him to jail. The man who no one can identify. The case that no one can locate.

Things have just gotten a little more complicated for our Uncle Poodle. Now, someone who claims to have communicated with Thompson on Grindr is trying to sell naked photos that Thompson supposedly sent him (isn’t humanity grand?). Thompson being linked to Grindr — the app about which controversy recently arose when a survey indicated half of its users were engaging in bareback sex — presents a delicate situation indeed.

People living with HIV have every right to “full and satisfying sexual and emotional lives,” as the Denver Principles stated thirty years ago. There is no evidence or details about Thompson’s sexual life or choices, so let’s simply hope he is conducting himself as someone with intimate knowledge of HIV non-disclosure laws, considering his contention that he sent someone to jail for withholding their status. The sword cuts both ways, and I worry for him.

Lee Thompson certainly has faced his share of scrutiny, living as an HIV positive gay man in the rural South, much less someone connected to a wildly popular reality series. But he should consider his moves, both public and private, very, very carefully. Because we don’t simply like to tear down celebrities, or save our judgment and revenge for those with the thickest skin.

As we prove time and again, we can do it to the very best of friends.

Mark

PLUS…

Thank you for your stunning readership in recent weeks, my friends. In particular, the recent post “Your Mother Liked It Bareback” broke all traffic records on this site. I will admit to being precociously provocative with that one, and especially appreciate the comments you left, which proved far more interesting than the post itself. I do believe, as Gus Cairns remarked, that much of this passionate debate is driven by the pure grief so many of us experienced — and that is nothing to be taken lightly. My point remains that our emotions have little to no effect on the fact that nearly half of gay men don’t use condoms at least some of the time; validating other prevention tools isn’t a threat to condom use; and finally, what are we doing for the 50% of gay men not using condoms — or are they expendable?

Posted in Gay Life, Living with HIV/AIDS, My Fabulous Disease, News, Prevention and Policy | 2 Comments »