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Damon L. Jacobs: The Calm in the PrEP Storm

Wednesday, August 6th, 2014

In 1977, I ran for senior class president, hoping against hope that my penchant for wearing platform shoes and fellating men in my spare time might somehow get overlooked by my high school classmates in Bossier City, Louisiana. I lost that faith when my campaign signs throughout the school hallways were vandalized. As the student body arrived that morning we were greeted with the word “FAG” scrawled across the posters in red spray paint.

Trying to comfort me, our student counselor Mrs. Berry gave me some advice. “When you put yourself out there in a position of leadership, you open yourself up to… criticism.” She stumbled over her word choice, unsatisfied with it, but I knew what she meant.

Still, a dozen posters with “FAG” painted on them seemed a little harsh.

Damon 1That lesson isn’t lost in the treacherous and very adult arena of gay sexual politics and PrEP (pre-exposure prophylaxis, or preventing HIV infection using the drug Truvada). Speaking up in favor of the prevention strategy often leads to being labeled as anti-condom or simply a barebacking slut. So much for the complexities of modern HIV prevention.

And then there’s the dark excesses of the internet age, in which people are symbols, hardly human at all, and serve only as place holders for a polarizing issue to be judged and dissected. It’s the contemporary version of red spray paint, obliterating the individual in favor of a single, cruel label.

One might expect Damon L. Jacobs, then, who has proferred himself to the world as a gay man using PrEP, to be a little bruised and resentful after two years of constant media exposure — and vulnerable to the name calling and labels thrust upon him. Nothing could be further from the truth.

Damon, who has spoken openly and sometimes explicitly about his sex life before and after PrEP to everyone from Huffington Post to The New York Times, takes the criticism and his accelerated celebrity all in stride. “It’s not personal,” he told me, referring to those who criticize the use of Truvada and his engagement in particular. “They don’t have any idea who I really am. Some anonymous people behind a keyboard do not matter.”

Instead, Damon believes we are in the midst of a community-wide teaching moment, so long as we do it carefully.

“We can’t underestimate the role of fear,” he said, suggesting his expertise as a New York therapist with a private practice. “For years, we have had to live a certain way by using condoms or die. Then suddenly things change. That’s where the attacks come from. Their belief system is threatened. I think attitudes are genuinely changing — the last year or so a lot of people have changed their views — but they have to go through a transition for that to happen. And they must be respected during that process.”

Although public scrutiny this intense is new for Damon, advocacy on behalf of gay men’s health is not. For years, Damon worked on behalf of an HIV vaccine trial, becoming a regular presence in the New York gay club scene to spread the word about enrollment. He continued the work even after opening his own therapy practice.

By the time the vaccine trial was discontinued in early 2013, Damon had been privately taking PrEP for nearly two years. After having heard about early, encouraging results of PrEP research — and facing the fact that he wasn’t using condoms as often as he once had — Damon talked to his physician and started taking Truvada independently long before it garnered FDA approval.

It was a prescient move on his part, but not a choice he had been discussing openly with the many gay men with whom he had been in contact through his vaccine work. A drag queen changed all that.

Damon had worked with her during his bar outreach about the vaccine trial, and when they crossed paths again he mentioned he was taking PrEP. “What’s that?” she asked. When he explained it, her face “just dropped,” he said.

“Why didn’t you ever tell me about this?” she asked him. “I just tested HIV positive.”

“No one was getting the message out,” Damon told me. “Not public health, not HIV organizations, not on social media. Nobody.” When Damon began a Facebook group about PrEP in July of 2013, the response was nearly immediate. “Things snowballed,” he said.

Damon 2What followed has been a firestorm of newspaper, television and online coverage of PrEP, often using Damon as a personal illustration. By participating, Damon has had to discuss the most personal aspects of his sexual life, including his growing reluctance to use condoms consistently, being a receptive sexual partner for whom exchanging semen has meaning and, perhaps most heretical after a generation of fear and mortality, the importance of pleasure and satisfaction in our sex lives as gay men.

“Pleasure and death have been one in the same,” he said. “For so long, pleasure could only result in something tragic, rather than seen as something important and powerful. To challenge that belief system, we need to have patience and compassion and empathy.”

Transparency about our sex lives — as they actually are, in the real world — has always been key in understanding behaviors and crafting HIV prevention messages. Moral debates only benefit the virus. But Damon’s honesty has enraged many gay men for “promoting” choices that are viewed as irresponsible and even dangerous. He responds to those attacks with his usual calm and a unyielding personal philosophy.

“I’m a student of A Course in Miracles,” he says, referring to the self-help curriculum popularized by Marianne Williamson in the 1980′s. Williamson was also very active in the earliest response to AIDS in Los Angeles. “I’m here doing God’s work,” Damon says simply. “And that work is to promote love in this world. I don’t usually talk about this, but I want to help people reduce fear. Depression, drugs, suicide, and even attacks on me, they’re all manifestations of fear.”

Honestly, I had expected to find an advocate more battered than this one. I was interested in the toll such constant scrutiny might take on a man. But Damon surrenders only the merest suggestion of the challenges of such explicit and public honesty.

“Most of the feedback about my work around PrEP has been great,” he said. “But a lot of hate and aggression has been unprecedented. It’s not the level I am used to. But I can sleep. A lot of people who stand up for love are going to be attacked.”

My high school campaign posters, a painful memory some forty years behind me, came again to mind. And in the calm of Damon’s convictions, those signs, dripping in spray paint, began to lose a great deal of their damaging power.

Mark

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Posted in Gay Life, My Fabulous Disease, News, Prevention and Policy | 4 Comments »

AIDS2014: The Complete Video Blog Collection

Tuesday, July 29th, 2014

The AIDS2014 International AIDS Conference in Melbourne, Australia, proved to be as colorful and exhausting as I had anticipated. There was no lack of images in the gorgeous city to share in my daily video blogs, and that included the faces of countless advocates from around the world.

My deep thanks to my friends at TheBody.com, who sent me to the conference and for whom I created exclusive content of the event. My Fabulous Disease was born on their site and it is a real gift to continue a collaboration that spans nearly twenty years.

My gratitude, too, to my new Aussie mates at Living Positive Victoria, an impressively active and engaged organization of people living with HIV/AIDS. They welcomed me warmly and were indispensable in providing guidance and access to a multitude of events.

Follow the links below to view each video at its home on TheBodyPro. Here’s a breakdown of each video episode and a little background on each.

Video #1: At MSM Global Forum, the Shock of Tragedy and the Road Forward

MSM DayNo one could have foreseen that the conference would begin in tragedy, as news of the crash of Malaysia flight MH17 circulated among delegates just as we arrived in Melbourne. Initial reports that more than 100 delegates had perished proved to be untrue, but the sting of loss was deeply felt nonetheless. At the pre-conference event sponsored by The Global Forum on MSM and HIV (MSMGF), emotions were high as prepared remarks were tossed in order to deal with the unthinkable events.

My own preparations for the day were jostled as well, because I knew my usual lighthearted reporting had no place among the broken hearts in the hall. I focused instead on the impact of the tragedy and how MSMGF had dealt with the events in the previous hours. And then, as we have come to know so well in the last 30 years, we soldiered on in memory of those no longer with us. A difficult day, even with the inspiring work that was presented.

Video #2: Criminal and Mannequins, Both Fighting HIV Stigma

MannequinsThe next pre-conference event, Beyond Blame, focused on the international issue of HIV criminalization. I have covered this topic before as it relates to the United States but it was awesome to see the international community at least as engaged as we are. Expert Edwin Bernard weighed in on breaking news from the US, while the inspiring Laurel Sprague puts the issue in context of women and power struggles.

Strolling the streets of Melbourne revealed a city very engaged in the conference, with bus signs and art installations everywhere. Wait until you meet Madam Kim of Positively Fabulous, who has funneled her “obsessive behaviors” into a hot pink avalanche of awareness and art that shines a light on women and HIV. You’ll also see reminders that the plane tragedy was still very much on the minds of the conference and the still-mourning city.

Video #3: The Global March and Candlelight Vigil

MARCHAlways one of my favorite events of the international conference, this video drops you smack in the middle of the march and allows the passionate advocates to tell you exactly why they are there. It’s the first time in my video coverage you get to meet so many of the international delegates face-to-face, and they do not disappoint. You’ll be cheering for them!

The Candlelight Vigil following the march took place in one of the most gorgeous pavilions I have ever seen, in downtown Melbourne. Because of my own issues with grief and loss – I’m one of those people that is afraid that if I start crying I may never stop – I reached out to delegate and psychotherapist David Fawcett about the nature of grief and why it is important to express these feelings as a community. His insight provided the perfect context to my footage of hundreds of people who had come to mourn the loss of so many over the years – and those who perished in the plane tragedy only days earlier.

Video #4: One World, One Place, Thousands of Voices: The Awesome Advocates of AIDS2014

PeopleWith countless global advocates convening in Melbourne, there is no shortage of impassioned voices. I realized soon enough that they needed little prompting from me, so I simply turned the camera on them and let them go for it. The result is a montage of voices, ringing out against all the ism’s of our modern world when it comes to HIV.

My new friend from Nigeria, who risks a decade in jail simply for providing services to gay men, sounded a truth that still rings in my ears. “We cannot let them die simply because of who they love,” he told me simply. Watching him celebrate at a dance party a few days later, in the safe company of his fellow delegates, told me everything about the resilience of our basic humanity, and how stubborn a thing like joy can be.

Video #5: Activist Theater, Condom Tryouts, and a Mystery Man Revealed

Theo-MarkThere’s no way I can produce these video blogs alone. It’s true that I operate on little sleep because after a full day of events I repair to my room to begin editing, a process that takes most of the night. But getting that footage in the first place means depending upon a camera man and assistant that shadows me day and night, maintains the schedule, and generally keeps me sane and laughs at my jokes.

Through Living Positive Victoria I found my professional dream date: Theodore, an Aussie from Sydney that had the perfect blend of patience, organization and good humor. He also happens to stop traffic with a towering physical presence and a smile that melts everyone, gay and straight, in his path. “Your camera man is so hot” became a running joke of the week.

Fortunately, I got to know the very heart of the man, and I’m much better for it. In this video, which takes you behind the scenes of theater being performed about HIV in Melbourne among other gems, I turned the tables on Theo and surprised him by getting him on camera for a change. You’re welcome.

Thank you, my friends, for the privilege of bringing the sights and sounds of AIDS2014 to you. I am deeply grateful for the opportunity, and hope the coverage provides just a glimpse of the spirit of the conference.

As always, thanks for watching, and please be well.

Mark

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

(VIDEO) The Juicy SILENCE=DEATH Stories You Never Knew

Sunday, June 29th, 2014

There was no way I could attend a recent conference with Avram Finkelstein, one of the artists behind the iconic SILENCE=DEATH image, and not make him sit down with me and spill all the juicy details about the creation of that image. He agreed, and boy howdy, he did not disappoint (video below).

Read my lips original imageSome of his best stories, in fact, weren’t even about the most famous poster for which he is known. As part of an artist collective that met privately during the earliest years of AIDS and then as an adjunct committee of ACT UP New York, Avram was in the middle of the action during an amazingly productive and creative time. You’re going to recognize most if not all of the striking social messages they created.

My favorite backstage detail is probably that of the gay pseudo porn star whose image they “acquired” (i.e. stole) from an old magazine. They used the photo for an incredibly successful campaign you will certainly recognize and everything was going swimmingly… until Avram received a startling phone call. What happened next, as the online meme goes, will surprise you and then break your heart.

These images rest in the history books now, but Avram has a fascinating way of keeping these stories exciting and immediate. I can’t wait for you to meet him.

Mark

p.s. <sigh> I have now upgraded to a super duper audio system for recording future interviews. Just sayin’.

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Posted in Living with HIV/AIDS, My Fabulous Disease, Prevention and Policy | 4 Comments »

Sally Field, Rational Relating, and a Comedy of Life with HIV

Monday, June 16th, 2014

Charles Sanchez skips a lot. It is a natural, vivacious skip, an outpouring of unabashed joy that melds the cheerfulness of The Sound of Music with the bliss of the Pharrell Williams “Happy” video. Nothing stands in the way of his delight. Not even life with HIV.

Merce logoIt is that joyful vibrancy that makes Merce, the web series in development by Charles and his production partner Tyne Firmin, feel so refreshing. Considering that characters living with HIV on television are few and far between — or presented as tragic — the project feels, well, almost subversive. And that’s exactly why Charles is pursuing his dream of bringing Merce to life.

“There’s something brave in Merce as a character,” said Charles in an interview. “I think Merce is me, if I had not been so worried about what people thought of me. He’s honest and hopeful, and I think that’s something people don’t always expect in someone who is HIV positive.”

Indeed. In a YouTube video, Charles asked people on the streets of New York what their favorite HIV character on television was. The answers, when anything at all came to mind, was decades-old portrayals from cancelled series, or actual people, like Magic Johnson or Mondo Guerra from Project Runway. “The only ongoing television character living with HIV is a Muppet,” said Charles. The production team hopes to add another character to the HIV canon that isn’t dying or a criminal.

Charles Sanchez“Usually, you can practically hear the foreboding dum dum DUUUM in the soundtrack when someone discloses,” said Charles (left). “Or on Law & Order, they’ll find the bottle of AZT in the dead man’s medicine cabinet and say, ‘well, that explains that.’ I think it’s time for us to have a conversation about normal life and HIV.”

Merce grew from another series created by Charles and Tyne, Manhattan Man-Travels, that revolved around the lives of gay men in New York. Filmed guerilla style using a Flip cam, the series has the low-budget appeal of early John Waters. “Our only budget was for apple fritters,” said Charles. “We love apple fritters.”

For Merce, the producers are using an IndieGoGo campaign to raise $15,000 for costumes, better camera equipment, and higher production values overall (tax deductible donations for as little as ten dollars can be made to the campaign until July 4th, which is administered through the non-profit arts organization Fractured Atlas).

As with most comedy, Merce grew from something more serious. In a video explanation of his own life with HIV, Charles recalls one of his first jobs in New York as an actor in 1987 — playing the part of AIDS Related Complex (ARC) in Attack of the Killer Virus, a musical geared to educating youth about the new disease. Before long, it was Charles himself who would be discovered by his roommate, sick and unconscious, in their apartment. His AIDS diagnosis brought a new urgency to his art and how best to use it to educate and inform.

Having survived that, and the love Charles has for musical theater, might help explain the skipping. “I’m a pretty happy and optimistic person, and I wanted Merce to have that in abundance,” Charles said. “I’m creating a show with a main character who doesn’t let his HIV define him or keep him from all the joys of life. Merce makes a lot of mistakes, but he celebrates life. Why not grin and laugh at life? Life is hilarious.”

Sally FieldWhile television may still be grappling with how to portray HIV in contemporary life, literary fiction remains a few steps ahead. In his challenging, sometimes frustrating new novel, Sally Field Can Play the Transsexual, author Leslie L. Smith asks us to examine the nature of modern gay sexual behaviors. Do we engage in unprotected sex out of defiance, grief, pleasure, or pathology?

There is much to consider in Smith’s story of David Matthews, an entitled gay escort engaged primarily in his own self-interest. When a benefactor wills David riches and asks him to pay it forward, the immature hooker begins a quest to reconcile his small-town upbringing with the numbed pleasure-seeking of his vocation.

Anyone who escaped home to pursue gay life elsewhere will relate to that journey, but the central device of the novel — the ghost of the rich man appears to David and sticks around to provide vague counsel or witty bon mots — reads like a uneasy grafting of gay sexual politics and the movie Ghost. The infusion of farce into an otherwise thoughtful reflection on what it means to be a responsible gay man today is jarring.

That’s a shame, because there are scenes in this book that go straight to the heart of our common experience navigating sex in the age of HIV. During a visit to his Arkansas home town set a few years ago, David hooks up with a local hottie and they fall into bed together. The reaction of his conquest when David attempts to forgo a condom is heartbreaking. “I’ve heard of people doing this,” the hottie says plaintively as he ends their encounter, “but I didn’t think it was true.” Even today, in a time of PrEP and undetectable viral loads, the simplicity of the statement will have gay men everywhere reflecting on their choices.

Bringing important discussions to life is why Leslie L. Smith should keep writing. His ear for the here and now is acute and authentic. He just doesn’t need spectral accoutrements.

rationalNavigating relationships is also on the mind of Damon L. Jacobs, a New York based gay therapist who provides clear, helpful advice to couples in his book, Rational Relating. Although the guide is meant for couples of every stripe, Damon thoughtfully includes plenty of tips for gay men in particular.

His advice is deceptively simple and easy to apply to our lives. His “five pillars” of integrity, communication, compassion, responsibility, and compromise are all examined through his work with various couples and the challenges they face in building a life together. The book is meant as a resource that couples might draw upon, and the result is a helpful tool that can benefit anyone.

Damon is widely known for his advocacy around Pre-exposure prophylaxis (PrEP), but that’s not his purpose in Rational Relating. It is nice to see, though, that what makes him a strong advocate is grounded in his professional experience helping people find integrity and meaning in their personal relationships.

Mark

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Posted in Gay Life, Living with HIV/AIDS, My Fabulous Disease | No Comments »

VIDEO: The Powerful “HIV is Not a Crime” Conference

Wednesday, June 11th, 2014

The most powerful speaker at the recent “HIV is Not a Crime” conference was a man named Kerry Thomas. He held the crowd of more than 150 advocates spellbound for a full twenty minutes. And he never even took the stage.

When one of the conference organizers, Reed Vreeland, stepped forward to introduce the next speaker during the opening night program, the energized audience had already heard a few stories of both injustice and inspiration. Everywhere in the United States, people living with HIV are being sent to jail for little more than their HIV status alone. But Reed had something else entirely to present.

“Kerry Thomas was prosecuted of not disclosing his HIV status to someone,” Reed began. Everyone knew that prosecutions for that crime are too often a matter of he/she said. How do you prove a private conversation? “Kerry also had an undetectable viral load,” Reed went on, “and he protected his partner by using a condom. No one was infected, and no one could have been. Kerry won’t get out of jail until the year 2038. Fortunately, we have him with us here this evening.”

And with that, Reed lifted his cell phone to the podium, and the strong, clear voice of Kerry Thomas, six years into his sentence at Idaho Correctional Facility, began to speak.

“Thank you, thank you for gathering to discuss this issue,” he said, and the stunned silence of the room was deafening. No one could begin to imagine what the man on the other end of the line must be going through.

HIVisNotACrimeARTKerry spoke of life behind bars, of his love for his family, of the prosecution led by people who didn’t believe he should be having sex at all. Then, he encouraged everyone in the room to work as hard as they could on reforming HIV criminalization laws, so that no one would have to go through the nightmare he was experiencing. He remained upbeat and gracious throughout.

The officials at the correctional facility who made it possible for Kerry to speak on the phone were thanked, and then Reed said some final words to Kerry. “Thank you for speaking to us,” Reed said.

The crowd swallowed the lump in their throats and came to life, beginning to applaud Kerry, and then to cheer, and it soon became an emotional outpouring of love and sadness and support that shook the auditorium.

“The room is applauding you,” Reed said into the phone. “Can you hear that?” How Reed kept his composure during the heartbreaking, inspiring moment was itself a considerable feat. Kerry’s response was drowned out by the thunderous ovation, so Reed continued relaying what he was witnessing from the stage.

“They are standing for you, Kerry,” he said calmly, as the ovation grew. “They are standing and applauding for you. They want you to know how much they support you.”

HIV cvanner crowdThe moment was singular, no doubt, but only one of a number of moving moments in three days of advocacy work. And the conference was definitely work, as advocates from around the country met to strategize how best to reform State laws that have little regard for the modern realities of HIV. In fact, there are people serving sentences right now for “exposing” others to HIV for actions that defy science as we know it, such as biting or spitting.

This video review of the conference will introduce you to the issue of HIV criminalization, the advocates fighting it, and some of those who have served jail time under the statutes.

Thanks for watching, please be well, and consider how precious your freedom is today. Many of us could be suffering the unjust fate of Kerry Thomas, the man who brought a national conference to a stunned, emotional halt.

Mark

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For more information, please check out The SERO Project, the Positive Justice Project, or the international efforts of the HIV Justice Network.

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

Was I a Teenage Predator?

Tuesday, May 27th, 2014

We’re on a dirt road in the cotton fields, sitting in the back of his Plymouth. It had been my idea to stop and look at the sky, and it doesn’t come off like a sneaky move now, because the moon is full and bright and gorgeous. I’ve been playing along but I wish he would make his move. This is the part that’s always kind of boring. He’s nice, though, and good looking, maybe around 35.

RoadIt’s a balmy Louisiana night in 1975. And I’m fourteen years old.

Everything goes as planned, and he gets me home on time so no one suspects. But he was a lot more nervous about it than I was.

And that was the routine during my teenage years. I had given up trying to mess around with other boys because it took forever to talk them into anything and I didn’t want them to freak out about it. So, I got involved in community theater productions during the summer, playing bit parts or working the spotlight, just to be in the company of gay men. Then it was just a matter of getting some time alone with them.

My strategy for getting laid worked with some regularity, and it never occurred to me there might be something inappropriate or perverse or even criminal about it. At least, it never occurred to me.

People tell me the criminal ramifications most certainly occurred to them. They say I was molested or abused, and that it was the very definition of the word “statutory.” They say I was dealing with adults who had the capacity to know better. And, most bruising to my ego, they tell me that my seductive charms were irrelevant, and that perhaps it was they who were doing the manipulating.

Now, forty years later, I wonder if my teenage memories are trustworthy, and if it set the stage for an adulthood in ways I’ve failed to acknowledge. Before I became a man, before the failed relationships and the sexual compulsions and the drug addiction, there was an adolescent who traveled side roads with strangers and took dangerous walks in public parks. And it is that boy, not the legion of adults I encountered, who fascinates and saddens me.

Was my fate sealed in the cotton fields of Louisiana?

The men I coaxed to those dusty roads aren’t villainous to me, and I still can’t allow them to be left dangling in guilt and shame. I won’t reduce them to simple pathology.

I met Jim in August, right before my freshman year in high school. The summer musical was 1776 and I was a stagehand. It was practically an all male cast, so it was a busy summer.

After a matinee performance one afternoon, I asked Jim for a ride to a pool party someone was throwing for the cast and crew. Once inside his car I told him I forgot my bathing suit and could we stop at his place so I could borrow one? What followed was a pitiful half naked fashion show in his bedroom, and a brief, awkward encounter between us.

Afterwards, I happily got back in the car but Jim wasn’t talking much. He had become really quiet as soon as we were done.

We had driven a few blocks when Jim let out a kind of cough, like he was trying to stifle something and it burst out anyway. I looked over and his whole face was wet.

“What’s wrong?” I asked. I had seen men in some personal situations, but I had never seen one cry.

He pulled the car over and turned it off. Suddenly, everything felt quiet and important.

“What is it?” I asked in a careful voice. “Am I in trouble?”

He was searching the car console for something and found a packet of Kleenex. He held it in his lap and started to speak while he opened it.

“I’m twice your age, Mark,” he said into his lap. His eyes were little cups of water, spilling. He turned to me. “You’re fifteen years old. I’m twice your age. Twice.”

His mathematics meant nothing to me. His expression toward me, sad and quizzical, felt like he was trying to read my mind. It made me uncomfortable. I didn’t know what he wanted. I sat there and said nothing.

He turned away and gulped back more tears. And then he asked the most mysterious question of all.

“Don’t you… just want to be fifteen, Mark?”

I had no idea what the man was talking about. I sat staring at him with my mouth open. I was completely stumped. Seconds went by and the car was silent.

My confusion seemed to disappoint him, because he shook his head slowly and looked back out the window. He was still very upset.

He wasn’t simply crying out of guilt, they tell me now. They insist he was deflecting his own criminal behavior by blaming me for not acting my age. They tell me that he was the one who had trapped me and I didn’t even know it.

Either way, I think Jim got more than he bargained for. I think he was a little frightened by the manipulative and unemotional fifteen year old sitting in his car that afternoon. And I think it saddened him because he cared about me.

And yes, I felt trapped all right, if only because I felt trapped in his car in this moment, where things were not going as planned, because after ten minutes we’re still parked on the side of the road and Jim won’t stop crying. I am staring at my shoelaces because I can’t imagine a grown guy would want anyone to see him like this. He must be so embarrassed. And I wish he would start the car, because the party is going on and there’s probably lots of people having fun around the pool and I really want to be there.

I finally look over at him and he’s blowing his nose. Maybe that means we’ll get moving again, I’m thinking. Jim doesn’t say anything else but he does finally turn the ignition and the car rumbles to a start.

I’m so relieved. I really want to see what’s happening at the party.

Mark

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My own views and memories on this topic remain conflicted, but I certainly do not intend to minimize sexual abuse when it does occur. If you are are trying to overcome childhood abuse, please consider contacting the Adult Survivors of Child Abuse (ASCA). — Mark

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Posted in Gay Life, My Fabulous Disease | 4 Comments »

The Battle for the Soul of AIDS

Thursday, May 22nd, 2014

While growing up gay in Bossier City, Lousiana, I would get saved at the drop of a hat. I loved the pageantry of church youth revivals, the thrill of coming forward to give my life to Christ, and that tingly feeling of being part of something greater than myself, of feeling truly blessed. Of being forgiven.

miguel_hospital_with_motherSIZEDThe church seemed like the cure for what ailed me. My shame over my sexuality was washed away with each baptism, and trust me, my brothers and sisters, there were many. For youth revivals and baptisms, Louisiana was a big circuit.  It was a rinse and repeat ritual that I sought out on a regular basis as a way to correct the vexing thoughts and deeds of my overactive teenage libido.

I remember telling my parents I was going to band practice just to slip away to my latest baptism obligation. I reveled in the full body dunking and then retreated to the dressing area and watched, transfixed, as the other male celebrants changed out of their soaked underwear. My yearning made me wonder if I should step back into the baptismal fount for another dip.

I don’t get baptized anymore. I abandoned the habit long before moving to Los Angeles in my early twenties, just as AIDS began its murderous march through my West Hollywood neighborhood. Not only had religion dismissed me personally, it was clearly unequipped to handle the throngs of dying  and disfigured gay men who suffered from the new plague.

In many respects the church became the enemy. Activists getting the word out about HIV transmission and safer sex clashed head-on with religious groups unwilling to discuss sexuality or condoms. The opposing views became a battle for the soul of AIDS.

In Body Counts, the personal chronicle by Sean Strub of AIDS politics and survival, Sean recounts in moving detail a 1985 ACT UP protest at St. Patrick’s Cathedral in New York City. Raised in the faith, Sean struggles with memories of his upbringing while his fellow protesters shout, throw condoms and decry the Catholic resistance to the basics of HIV prevention. Sean emotionally receives communion before announcing to the priest offering the wafer, “May the Lord bless the man I love, who died a year ago this week.”

Cardinal John O’Connor, who led the mass, met the chaos with an opportunistic cynicism. “He sits with his head in his hands, melodramatically trying to convey spiritual pain,” Sean writes. “Photographs of the media-savvy cardinal looking tragically besieged will elicit overwhelming sympathy when they appear on the front page of Monday’s newspaper.”

“The church failed,” says Rev. Chris Glaser, a longtime Presbyterian gay activist and writer, about the AIDS response from organized religion. “There were exceptions, and eventually the church remembered how Jesus would have responded.” (One of those exceptions would have to be Mother Teresa, who opened her first AIDS hospice in New York City in 1985. Her reference to  the homeless, “This is Christ in distressing disguise,” has obvious applications to people living with AIDS.)

Gay men filled the spiritual vacuum with alternatives. Metaphysics became popular in the crisis years, as well as the teachings of spiritualists like popular author Louise Hay. At “Hayride” events throughout the mid-1980′s, the West Hollywood community auditorium was stuffed tighter than a Cher concert with gay men, most of them sick and all of them hungry for the grace of Hay’s simple message: “You are loved.”

The personal price of religion’s failed ministry can be measured in children cast out from families and lonely deaths and assurances of eternal damnation.

In an intriguing new documentary still in production, Memories of a Penitent Heart, filmmaker Cecilia Aldarondo unwraps the mystery of her gay uncle, Miguel Dieppa, who died of AIDS in 1987. Miguel supposedly repented of his homosexuality on his deathbed, leaving behind a live-in partner who was kept from the funeral, a devout Catholic mother, and a lot of troubling rumors.

The film charts Cecilia’s investigation into this unresolved past, taking an abrupt turn when Miguel’s partner suddenly reappears after two years of dead ends — as a Franciscan monk living in Pasadena. He’s waited 25 years to tell his version of the story. Cecilia and the team behind the film have launched an Indiegogo campaign in order to complete the project (see the trailer below).

Memories of a Penitent Heart is “a cautionary tale about missed opportunities, the intricacies of religious belief, and the most quietly insidious forms of bigotry,” according to promotional materials.

“The religion aspect is underexplored in the narrative of AIDS,” Cecilia told me. “Although it has been a very strong current running through the crisis, and a lot more common than we have discussed in our culture. These issues are still with us today.”

“This is not a film that tries to demonize my grandmother,” she said, in reference to the religious sway Miguel’s mother may have held over her son during his dying process. “She was acting out of fear, not out of hatred. What I think is possible is that Miguel really loved his mother and (offered his repentance) to her as a gift. I also think he was a practicing Christian, and that it mattered to him.”

The film’s themes bring up a lot of unresolved anger and grief for me. So many people and institutions failed us when we needed them, most ironically the ones that purport to bring comfort and aid.

“I hope the film helps us have a different conversation with each other,” Celilia said. “Whether it’s about the past or the present.”

“There are a lot of wounds that have to heal,” she added thoughtfully, as someone who had weathered the damage in her own family. “Wounds on both sides.”

Mark

(Pictured above: Miguel Dieppa and his mother, 1985. The Indiegogo campaign for Memories of a Penitent Heart ends on June 18.)

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Posted in Family and Friends, Living with HIV/AIDS, My Fabulous Disease, News | 2 Comments »

When People with HIV Became Suicide Bombers

Wednesday, April 2nd, 2014

Maybe we should blame the criminal prosecutions of people with HIV on the mythical legend of Gaetan Dugas, also known by his slanderous nickname, Patient Zero. Dugas was a gay flight attendant from Canada who, according to Randy Shilts’ 1987 book And the Band Played On, was among the first people with HIV in the United States.

Gaetan Dugas picAs the story goes, energetic Dugas (right) spent lots of time in the very early 1980′s getting laid in practically every city with an airport, even after learning he had the mysterious new “gay cancer.” He wanted to go out with a bang, the book claimed, and he didn’t particularly care who he might infect in the process. The book repeated rumors that after sex with bath house tricks Dugas would point out his skin lesions and then announce, “now you have it.”

Except the story isn’t true. Two years ago, Shilts’ former editor admitted the book needed a “literary device” and had encouraged Shilts to create the epidemic’s first “AIDS monster.” The scandalous sex life of Gaetan Dugas fit the bill nicely. Dugas died in 1984, never having the opportunity to answer his accusers regarding his alleged behaviors.

Instead of placing responsibility with everyone having sex, the book painted people with HIV as suicide bombers. The damage, to the truth and to the public image of people with AIDS, still reverberates today.

Laws exist in more than 30 States that criminalize people with HIV for not disclosing their status to sexual partners. Even where there are no HIV-specific laws, charges range from assault to attempted murder to bioterrorism. It should be noted that the vast majority of prosecutions do not involve the transmission of HIV. Often, the person charged used a condom, had an undetectable viral load, or engaged in sexual behavior that could not have infected their partner.

Anyone with HIV and a pissed off ex-lover should feel worried, since these cases often become a matter of whom you believe. Prosecutors and unfriendly juries are often shocked that people with HIV are having sex at all. They couldn’t care less about condoms or undetectable viral loads. They just want people who don’t disclose their status to face serious charges.

A lot of people see this as righteous and are taking the bait. Many of us know someone infected by a sex partner who lied about their status, and we want that jerk to pay for it. This sense of vengeance plays into the hands of a conservative legal system that is more than happy to send some diseased fags to jail. For a really long time. Regardless of the actual harm inflicted.

This issue is a real mine field of emotion, justice, science, and payback. Fortunately, an upcoming event will bring together advocates, legal experts and people living with HIV to discuss criminalization and map out a strategy to address it.

HIVisNotACrimeART“HIV is Not a Crime” is the first national conference on HIV criminalization.  It will be held on June 2-5, 2014, in Grinnell, Iowa.  Yes, Iowa. Some of the most effective activism around this issue is happening there, where State legislators are actually re-thinking their own laws and health policies as a result of smart advocacy and education. I urge you to alert your local HIV advocates about this important event.

Regardless of your views on criminalization, we can all agree that anyone who intentionally seeks to harm another person should be held accountable for it. That’s why we have laws against hurting other people.

But why are there laws on the books specific to HIV non-disclosure? HIV has its very own laws ordering people to disclose if they have it. The same cannot be said for other infectious viruses such as Human Papillomavirus (HPV) or Hepatitis C, which actually kill more people each year. The reason, in the mind of many advocates, is because those viral conditions are not as closely associated with gay sexuality. Or race. Or the disenfranchised. I hope you’re getting the picture.

Criminalization is not limited to whether or not someone discloses, even if those scenarios capture our imagination the most. Laws have other ways to punish those with HIV. 

Charges for an unrelated crime can be elevated if the defendant is HIV positive. Prostitution, or spitting at a cop, or punching somebody in the face in a bar, can carry more severe sentences based on the fact the accused is HIV positive.

In other words, defendants are guilty of living with HIV. That should give you real pause.

Surveys conducted by The SERO Project indicate that knowing about the risk of being charged with non-disclosure is an impediment to HIV testing. After witnessing how people with HIV are being treated by the judicial system, getting tested might feel like exposing yourself to potential prosecution.

These prosecutions do not rely upon the context of HIV disclosure, either. “The moral obligation to disclose increases with the degree of risk present,” said Sean Strub, founder of The SERO Project and one of the organizers of the Iowa conference, “but the context of the sexual encounter is also a factor.  In the context of a committed relationships, the disclosure obligation is much greater than in a sex club, for example.”

The key point here is morality. Disclosing your status is a moral issue, not a criminal one. Even in the worst years of AIDS, when the virus reliably killed you, we called our doctors to start treatment when we got infected. We didn’t call the cops. Blaming someone for our own risk behaviors seemed ludicrous. It still does.

You wouldn’t know it from news reports, which often feature race-driven cases of predatory men lurking around the countryside infecting the populous. Suicide bombers continue to titillate the media.

Look closely at the stories and you will find that “not disclosing” is usually equated with “intentionally infecting.” It’s as if sex of any kind on the part of someone with HIV is malicious. One side effect of HIV infection, it would seem, is a pathological bloodlust.

Never forget that these juicy legal stories represent the lives of real people. Sentences amounting to decades are being wielded. The convicted are having to register as sex offenders. In the often confusing landscape of sexual risk and negotiation, the person with HIV is facing grave consequences for decisions often made in the heat of the moment, or simply because they chose to protect their privacy when no risk to their partner existed.

HIV criminalization does nothing to reduce the impact of a new HIV infection.  It doubles it.

Mark

ALSO…

bars hands 2There’s a lot of great reporting and blogging about this issue right now, and here’s some of the best: Jake Sobo, the always intriguingly transparent blogger behind Promiscuous Gay Nerd, shares the frightening encounter a poz friend had when he visited his local health department and ended up accused of maliciously spreading HIV. HealthlineNews has posted an update on cases in Iowa that involve the very advocates doing such inspiring work there. The Gay and Lesbian Alliance Against Defamation (GLAAD) has made the gutsy choice to post an essay on the media’s role in perpetuating ignorance about criminalization (even though many of their usual media outlets refused to run it).  The most comprehensive piece on criminalization, though, could be “Sex, Lies, and HIV,” a ProPublica piece recently re-posted by HIVPlus Magazine that examines several of the most high-profile cases.

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Posted in Living with HIV/AIDS, My Fabulous Disease, News, Prevention and Policy | 5 Comments »

Lessons Learned from Kissing a Straight Boy

Monday, March 24th, 2014

Last night I kissed a straight guy full on the lips. Then he tenderly put his arms around me and kissed me back. Tonight I’m going to do it again.

It sounds like conquest. Or breaking a taboo. At the very least it fulfills the fantasies of many a gay man.

And it makes me wonder why.

GayKissCartoonThe object of my affections is a man named Travis, and he plays my lover in a play we’re performing about a gay couple doomed by drug abuse.

Travis is most certainly straight, judging by the dorm room condition of his dressing area, his raunchy jokes and the effortless masculinity he possesses and that I can only approximate.

At an early rehearsal, long before any kissing would ensue, the director motioned me aside to share some surprising words.

“Let’s take our time working up to the kisses,” said the director. He lowered his voice a little. “Travis has never kissed a man. He’s straight.” It sounded like a condition.

And in a way, it was. It immediately colored how I acted around him, on stage and off. The play covers our courtship and as we rehearsed I felt another type of courtship happening. Was he watching me, thinking “that’s the guy I have to kiss?” Was I masculine enough? Did he think I was cute? Did he even care if I was attractive or not? Was he disgusted at the thought of touching me?

Obviously he was comfortable enough to take the role. But to be honest, he was nervous and it showed. I finally got the nerve to say something about it during a break.

“So Travis,” I began. “You’re straight and you’ve never kissed a guy I hear.”

“Yeah, yeah,” he said. “Sorry about that.” He was actually apologizing for being straight, and I felt like doing the same thing for being gay. “I guess it’s an issue for me but I’ll get more comfortable. I did a nude scene with a gay guy before, but I wasn’t playing gay and we didn’t kiss or anything.”

This man was on stage naked and found it easier than kissing a guy? I would French kiss the entire cast and crew of “Ugly Betty” before you would find me dangling uncovered on stage.

Bringing it up helped immensely. We not only joked about his “condition,” but we also discussed mine: HIV. It allowed me to engage in some basic HIV prevention education with someone who might not otherwise get candid answers to his concerns. Yes, he knew you couldn’t get it from kissing, but hearing it definitively made him more at ease.

We made a deal that we would start kissing when we no longer needed to hold scripts, and when that time came, I didn’t hesitate. And bless him, neither did he.

It was a brief, perfectly ordinary kiss. And it was done.

Once the occasion had passed I think we both realized it was much ado about nothing. But it got me thinking about why the fact he is straight made the idea of kissing him somehow more exciting. Why? It may be as simple as wanting what you can not have. And that’s a common desire.

It’s the other implications that bother me. Do I see a straight man as innately more appealing than myself? As “better,” as a more authentic specimen of Man? That would suggest I think of myself as less than ideal because of my sexuality.

Whatever the reasons, it’s not the only preconceived ideas I had about my straight co-star. I questioned if he could pull off the gay thing. Or would something, like his macho pride or his clueless heterosexuality, prevent his performance from being “authentic?”

But something happens every performance that surprises me and shames my prejudices. This lumbering straight dude who bristles when I call him “sweetheart” offstage becomes a giving, affectionate lover onstage. His eyes smile at me. He pulls me closer in our bedroom scene. He shows a sensitive, willing and playful vulnerability.

It has been an enlightening experience. I now realize how little faith I had in his talent, much less his humanity. I’m not alone. Half the cast is gay, and almost all of us play multiple roles in various sexual combinations. Between our sincere desire to understand our characters and getting to know each other, the backstage chatter runs somewhere between Dr. Phil and Jerry Springer.

We’ve all learned a lot. I learned that if something got in the way of portraying a gay couple on stage, it wasn’t the straight man’s phobias.

It was mine.

Mark

This piece originally appeared on my blog in October of 2011, but now I am ready to unmask my straight co-star! He is none other than the talented Travis Young, who has gone on to an exciting career as a television actor (he’s a regular on the new Resurrection). You can check out his Facebook page here. As for me, well, I’m still gay. — Mark

PLUS…

HIVisNotACrimeARTIt remains the defining HIV issue of our time: HIV criminalization, or people with HIV being arrested and prosecuted for not disclosing their status to sex partners, for instance. This is a very real thing, folks. Rather than an actual public health service, prosecutions seemed to be based on a belief that people with HIV shouldn’t be having sex at all, and they usually ignore the actual risks involved (judges and juries don’t seem to care if condoms were used, or even if anyone was infected or not). Some of the most exciting advocacy around this issue is being led by advocates in Iowa (yes, Iowa), so it’s fitting that the first national “HIV is Not a Crime” conference on criminalization will take place there. I urge you to look into this issue, and the best place to start would be the web site for The Sero Project.

Grindr picMy occasional health-related items for the pop culture site Queerty (possibly the most trafficked site for younger gay men) have been fun and challenging. Mostly, I’m intimidated writing in a “young, snappy” style that might appeal to their audience, especially since I’d rather just go lie down. So far my pieces have included explaining the new “undetectable” study; the role of meth and the health of people with HIV; and how at least one health department is joining the cruisers on Grindr. I’m really grateful for the opportunity to reach this audience and will keep on trying not to let my age show.

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Posted in Anita Mann and Acting Gigs, Gay Life, My Fabulous Disease, News | 1 Comment »

Will HIV Ever Be Safe Enough for You?

Tuesday, March 11th, 2014

There is a classic episode of Oprah from 1987 that can still raise my blood pressure. That year, the tiny town of Williamson, West Virginia, became part of a national discussion about AIDS when Mike Sisco, who had returned to his home town to die of the disease, dared to step into a public pool.

Scary nightmareThe community freakout was immediate. Sisco was quickly labeled a psychopath (rumors emerged accusing him of spitting into food at the grocery store), and the town pool was closed the next day to begin a Silkwood-style pressurized cleaning.

Soon thereafter, Oprah Winfrey arrived with cameras for a town hall forum about the incident.  Fear was the order of the day. “If there’s just one chance in a million that somebody could catch that virus from a swimming pool,” the town’s mayor told Winfrey’s worldwide audience, “I think I did the right thing.”

Sure. Why not react in the most extreme way possible, if there is a chance in a million?

Williamson citizens were not swayed by health officials who calmly explained the established routes of HIV transmission and the impossibility of infection from a pool. “The doctors can say you can’t get it this way,” a woman countered, “but what if they come back someday and say, ‘We were wrong?’”

Indeed. What if? If there’s a chance in a million…?

That broadcast might have remained a sad footnote in HIV/AIDS history, an instructive example of people ignoring scientific fact to protect a satisfying fear, if history didn’t enjoy repeating itself so much. Today, though, the willful ignorance isn’t coming from uneducated residents of a southern town you can barely find on a map.

It’s coming from gay men. And they are just as threatened, frightened, and dismissive of science as the townsfolk of Williamson were thirty years ago.

Recently, research known as The PARTNER Study was presented at the prestigious Conference on Retroviruses and Opportunistic Infections (CROI). PARTNER proved something HIV advocates have long suspected: people with HIV with an undetectable viral load are not transmitting the virus to their partners. The study included nearly 800 couples, all involved in an HIV positive/negative relationship, gay and straight, with the positive partner maintaining an undetectable viral load. Over the course of two years, more than 30,000 sex acts were reported and documented (couples were chosen based on their tendency to have sex without condoms).

Not a single HIV transmission occurred during the study from someone with an undetectable viral load. If PARTNER had been researching a new medication, they would have stopped the trial and dispensed the drug immediately.

The PARTNER results bolster the prevention strategy known as “Treatment as Prevention” (TasP), meaning, a positive person on successful treatment prevents new infections. To date, there is not a single confirmed report of someone with an undetectable viral load infecting someone else, in studies or in real life.

Just don’t tell that to a sizable contingent of skeptical gay men, many of whom took to their keyboards to dismiss the PARTNER findings. Phrases like “false sense of security,” “positive guys lie,” “junk science,” and “if there’s even a small risk” appeared on Facebook postings and in web site comment sections. The people of Williamson must be slowly nodding their heads.

Resistance to the PARTNER study corresponds with stubborn doubts about PrEP (pre-exposure prophylaxis, or HIV negative people taking the drug Truvada to prevent infection). Although virtually every nervous argument against PrEP has been overruled by the facts, naysayers continue to either reject the evidence outright or make moral judgments about the sex lives of HIV negative gay men on PrEP.

Yes, there are unknowns. There always are when scientific studies meet the real world. And every strategy will not work for every person. But the vehement rejection of such profound breakthroughs suggests there is something more, something deeper, going on in the minds of gay men. What is it?

Our collective memories of AIDS horror are hard to shake, and that’s a good place to start. On a gut level, any study suggesting that HIV could be neutralized is met with a weary doubt. Good news is no match for the enduring grief that has shadowed us for 30 years.

The PARTNER study also threatens the view that positive men are nothing more than risks that must be managed. The study kills the HIV positive boogeyman. It means positive gay men who know their status might actually care enough about their health to seek out care, get on treatment, and become undetectable. And, once the positive partner is no longer a particular danger, both partners would bear responsibility for their actions. What an enormous psychic change that would require in our community.

It’s tough to do that when fear creeps in and “what if?” fantasy scenarios take hold. What if my partner missed a dose yesterday and, even though HIV meds stay in the bloodstream for extended periods, his viral load has inexplicably shot up? What if he isn’t being truthful about his viral load? What if he doesn’t know?

The greater threat, folks, isn’t positive guys who think they are undetectable but are not. It’s men who think they are HIV negative but are not. But we’d rather stay focused on the positive person being at fault, because, well, people with HIV lie a lot. We miss doses constantly because we have a death wish or we’re too busy finding our next victim.

I have some “what if?” questions of my own. What if these unrealistic fears were meant to stigmatize and isolate HIV positive people? What if I am undetectable and feel no responsibility to discuss my status with a sex partner because I don’t care to engage in a science lesson? What if everyone availed themselves to prevention options that worked best for them? What if my HIV status were none of your damn business?

These risks could be alleviated, of course, if everyone simply protected their own bodies when having sex with people they don’t know or trust. But that would place an equal burden on negative men, and what a bother that is.  Better to leave that discomfort to those with HIV, vectors of disease that we are. Just consider us criminals, lying to you about our viral loads and spitting in the food in Williamson, just waiting to infect you when we get the chance.

 

As long as we’re giving undue attention to fantasy scenarios we’re not focused on the real threats. The rates of STD’s are up. Young gay black men in the United States don’t have proper access to healthcare and have infection rates worse than any developed country. Our community is plagued by  alcoholism, addiction, and mental illness. Do we want to debate established science or should we devote that energy to other challenges to gay men’s health?

If you still have the arrogance to believe you could win the HIV Powerball Lottery and be the one person who gets infected in ways science has disproven, you’re perfectly entitled to that point of view.

Here are some helpful instructions, however. Carefully step away from your computer and don’t touch the cords because 50 people die of product related electrocutions each year. Walk slowly to your bedroom, being mindful of debris in your path because slip-and-falls kill 55 people every single day. Once there, refuse food or water because, well, you never know. Now slip into your bed of willful ignorance and try to make yourself comfortable.

The good people of Williamson are keeping a spot warm just for you.

Mark

p.s. In the time it took you to read this article, the number of people who were infected by someone with HIV who had no viral load was zero.

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Posted in Gay Life, Living with HIV/AIDS, My Fabulous Disease, News, Prevention and Policy | 38 Comments »