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The Disguised Blessings of HIV+ Poet Mary Bowman

Monday, November 10th, 2014

When Mary E. Bowman stepped to the stage five years ago at SpitDat, an open mic night in Washington, DC, she was 20 years old and terrified. She was about to perform “Dandelions,” her first poem to reveal a secret that her own family had long kept quiet: that Mary had lived with HIV since birth, the result of a mother addicted to drugs who died when Mary was only three.

MaryBowmanGrab“I had not memorized the poem yet,” Mary told me, “and the paper I held was shaking. It is usually kind of a loud environment, but when I started to read, the room went silent. That made it even more nerve-wracking.”

Mary was nervous about the audience response, about what they would say, and if any of them would even be her friend once her poem was done. She needn’t have worried.

“It was such a loving environment,” she said. “It was so accepting, like a family. When I was done, everyone applauded. I walked to my seat and a young lady was crying, and all she said to me was ‘thank you.’ I realized the poem wasn’t just about me. It was about other people, too.”

“Dandelions” explored her feelings about the mother Mary hardly knew, a loss that Mary has felt deeply her entire life. “I was eventually raised by my biological father,” Mary explained. “He wasn’t married to my mother. He would come to see me when I was a baby and find me on the sofa alone… and my mother out of the house.”

Mary’s father witnessed the scene “far too many times” and took the child home to his wife, who fell in love immediately and raised Mary as her own.

Mary’s talent lies not only in her poetic words, but the sheer passionate force of the emotions behind them. It’s impossible to watch her and not to be moved. She grabs you by the heart and doesn’t let go.

Today, Mary works in policy and advocacy at The Women’s Collective in Washington, DC, but only after spending her younger years without very much social support for her status. “My family was very quiet about HIV,” she said. “Even when I was at the hospital growing up, I didn’t have an outlet to talk about it.”

Things have changed. In addition to her advocacy work, Mary has performed at HIV conferences and for events such as AIDSWatch in Washington. Her work as a performance artist and poet is a unique niche among young advocates, but it is when working with other women that the loss of her own mother sweeps over her.

A lot of the women have drug addiction histories. They have had their children taken away. “They are my support system,” Mary says, “and it reminds me that my mother isn’t here. They tell me stories. I just wish someone had saved my Mom as well. She didn’t have the services available to her that they do now.”

Working with these women has been a melancholy gift to the young artist.

“I’ve been caught up in emotion several times, when performing for women,” she says, and their bond has become her only connection to a woman lost to time and sad circumstance. She pauses to consider the many faces of the women for whom she has recited “Dandelions.”

“They are my mother,” she adds.

Mark

Dandelions

A dandelion in the midst of rose bushes would stick out like a sore thumb to ignorant souls
But I know the road this dandelion endured
This weed that all gardeners want to destroy is more appreciated by God than any seemingly beautiful bush of roses
Though that misunderstood dandelion wont for long last
Let it be known that God gave it the role of the outcast for divine importance
My mother was a dandelion in the midst of roses
Ignorant of her purpose she uprooted her soul and unknowingly left herself for dead
It has been said that my mother when above the influence transmuted broken hearts into smiles
All the while dying on the inside
AIDS didn’t kill my mother
It put her at rest
Now this song bird whistles in the key of silence
And I the latter of five write poems documenting the struggle unknown to my family
The sickness she denied lies in my blood with a lesser value
People speak I don’t know how you can live with knowing nothing but owning the growing disease that your mother for so long fought
But see that’s the difference between a rose and a dandelion
Roses were created with thorns to warn hand approaching without caution
Dandelions were not given that option
But they were created by an all knowing God
And that all knowing God created dandelions with the strength to withstand ignorance and hatred
Dandelions live in this matrix of life understanding the price
Roses live like the world was handed
Dandelions take the world and won’t leave a rose stranded
But my mother died before she got the chance to realize that dandelions are blessings in disguise
She I dare say died before her time
That thought lingers in my mind conflicting my belief in the divine
My mama raised me in the faith that the day God sweeps you away is a day proclaimed way before the manifestation
But I can’t help but experience devastation knowing nothing about the woman who carried me toting guns in the defense of my father
It is even harder knowing nothing about her but knowing the reason the hospital has become my second home is because this dandelion
chose to roam with the buffalo
But I seek serenity in the fact that she just didn’t know
That she a dandelion was just as beautiful as a rose
And I will go forth knowing my purpose as a dandelion
This life is worth all the crying and all the dying I have to do just so someone in my shoes can live
I will gladly give myself as the sacrifice if it means that all the dandelions in the world become viewed as more than the consequence of sins behind closed doors
You can lay me on my back and present me life less to God if it means that dandelions with unseen scares will not be viewed as odd
But as gifts from God to show the world that beauty lies not in the pedals of flowers but in the power of unconditional love
And in the strength of the untouched, un-hugged, sometimes unloved but most important of all un-budged dandelions

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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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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 »

Going Down Under for AIDS2014!

Monday, July 14th, 2014

(NOTE: My AIDS2014 coverage is exclusive to TheBody.com this year and you can find my daily videos on their main page beginning this Sunday, July 20th.)

Are you ready for a theater piece about HIV that takes place on an enormous bed that doubles as a boxing ring? How about a candlelight march with thousands of advocates from around the world? And don’t forget my favorite — the Global Village, stuffed with art and advocacy from every corner of the planet? All this and more will be part of my coverage of the upcoming International AIDS Conference!

 

I’m headed down under for AIDS2014 in Melbourne from July 19-25! I’m so excited to be creating exclusive coverage for TheBody, the site that sent me my first camera and said, “just do what you do.” I’m so proud of my association with this tremendous online resource. mark_in_the_outback_edited-1

To watch my coverage, you’ll have to go to TheBody.com. My whimsical, sometimes emotional reporting will be hard to miss from their main page and should begin on Sunday, July 20th.

In Melbourne, I’m going to leave the clinical data and research to those better qualified. Instead, I hope to provide you with something you might not see anywhere else: the advocates, the people living with HIV from around the world, and the awesome visuals of the music and dance and theater and human drama of the conference.

Are you ready? Let’s go!

Mark

p.s. To watch my coverage, just head to TheBody and look for my video coverage, beginning Sunday, July 20th. I hope to post every day!

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(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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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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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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Secrets of the Masturbating Gay Male

Monday, May 19th, 2014

May is National Masturbation Month — Hurry, folks! Only a few days left to celebrate! — and I will admit to feeling smug, because I have more experience with gay men masturbating than anyone else I know.

Telerotic4During my years in Los Angeles in the 1980’s, I owned and operated Telerotic, a gay men’s “phone fantasy” company.

This was long before Grindr or Manhunt, or even the automated phone lines of the 90’s.  Instead, men called an 800 number and used a credit card to spend $40 on the man of their dreams, who would call them back after the charge was approved.

As a struggling young actor, I had begun this odd vocation by working for an outfit as one of their “fantasy callers.” The company called me at home with the name and number of the customer and his fantasy man description, and I would assume the desired character and call him back.

My job was to sound credible in roles ranging from cocky Venice Beach bodybuilder to volunteer firefighter to leather daddy, and manipulate the customer toward the prime objective within the typical call duration of thirteen minutes. It helped if I could convince him that our connection was mutually mind-blowing to help ensure he would call again.

As it turns out, I had a way with words. After a few months learning the ropes I struck out on my own, and Telerotic was born.

Over the years of my vocation I spoke to thousands of men. Some of them faithfully requested me every week, uttering secrets to me they had never spoken aloud before. It was amazing insight into the realm of fantasy, loneliness and desire. It was also, quite literally, a social anthropologist’s wet dream.

Telerotic2My customers were usually trapped in a life without a gay outlet. Some of them were in a straight marriage, but most of them lived in small towns and were helpless to locate male companionship. (Remember, this was the early 1980’s, which compared to the LGBT advances of today might as well have been the Old West).

Their desires were not so bizarre that they they had to resort to phone sex to speak of them. Their requests were simple and almost touchingly mundane. Touch me there. Let me tell you what I think about. Watch me do this. 

I learned a lot about what makes gay men tick. Yes, we have a size fixation. My clients wanted everything supersized, from muscles to dick to sexual prowess. But I soon realized that these were surface interests. They asked for what they saw in porn flicks, but it wasn’t what ultimately satisfied them.

They wanted something bigger, more masculine, and better hung than themselves because it was their way of asking to be taken care of, to be released of their own worries and responsibilities and turn over the driving to someone else. Any of us can recognize that need, and the loving act we perform when we provide it to our partner.

Telerotic3Our chats were a lifeline to many of my regular customers. For those who didn’t abruptly hang up after the sex talk had reached its conclusion, our pillow talk afterwards sometimes featured their achingly honest hopes and dreams. They would recount their loves lost or found, the pain of isolation and their dreams of having a life with the right man someday.

Occasionally their patronage would end after news of a potential boyfriend — or resume when it didn’t work out. Sometimes our calls ran long, as I gently led a faceless, suffering voice away from unexpected grief or embarrassed tears.

Truly revealing myself, however, was an occupational hazard I never risked. I held tight to the gravelly voice I maintained for our calls. I only responded as my adopted character might. Every orgasm of mine with a phone customer was earth shuddering, passionate, and entirely faked. No matter what intimacies they had the courage to share about themselves, they got nothing of the kind in return, whether they knew it or not. I simply wouldn’t compromise my fantasy persona to admit I was actually a skinny redhead trying to make a buck in Hollywood.

As the AIDS headlines during that time increased, so did business. And at long last, something jolted me from my shallow priorities of phone sex profits.

I’d had enough of the charade. It was wearing on me, being taken into the confidence of all of these men and giving them bullshit in return. What was the satisfaction, much less the pride, in representing a bogus sexual ideal for the sake of my continued prosperity, in being an incredibly convincing lie?

Soon enough, I could no longer reconcile the dream world my phone calls inhabited with the encroaching nightmare of the very real AIDS crisis.

Telerotic1Maybe the end came when a customer, in the midst of our graphic call, helpfully offered to get a condom from the drawer so I could put it on. AIDS had permeated his psyche so completely it had pierced his very fantasies. His presence of mind to protect himself — and by extension me, the phone whore on the other end of the line — was a bittersweet gesture so filled with grace, and so steeped in the realities of the new epidemic, that it stopped me in my tracks and broke my cynical heart.

It wasn’t long before I sold the company and ended my stint as a sexual entrepreneur. For a while I entertained friends with the most unusual sexual idiosyncracies that had once been shared with me by voices on the phone. But that exercise didn’t feel comfortable for very long. It felt like betrayal.

Today, what I remember most is the sound of men chasing a glancing, counterfeit intimacy because it was all life would afford them, and hearing their desire for something lasting in life and their doubts about finding it.

And I am haunted, deeply and forever, by the sound of profound longing in their voices.

Mark

(This period of my life is covered in more detail in my book, A Place Like This.)

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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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Our Problem with Being ‘CURED’ of HIV

Friday, February 28th, 2014

In the late 1980’s, I let this odd, fussy man into my office at LA Shanti, my first AIDS agency job. He seemed earnest and harmless and he just wanted a few minutes of my time. “I have the cure for AIDS,” he politely announced. Sadly, he wasn’t the first person to say that to me, but we practiced more suspension of disbelief during that wretched decade so making such a statement wasn’t immediate cause for removal from my office.

CURED CoverHe set a wooden box on my desk, the size of a breadbox and with unfinished wood, like something you had just started building in shop class. He opened it to reveal a jumble of wires and what appeared to be a very large battery of some kind. It looked like a bomb.

“Electromagnetics,” he said, with his index finger up, like a teacher. I was so entranced by the device that I didn’t notice him attaching one of the wires to my finger with a clip. I felt it softly bite my skin and looked down, horrified.

His scholarly tone didn’t change at all. “When I attach this to your other hand,” he said, reaching for it, “the magnetic field will purge your body and your blood.” I saw him taking my other hand. “This is science,” he added proudly. He was smiling.

I sprang from his grasp and shook the clip from my finger. I suddenly remembered I had a staff meeting. An extremely important staff meeting. I thanked him and excused myself to get to my very important, life saving staff meeting.

It’s tricky in the HIV community, using the “C” word. Long term survivors like me have had our hopes raised so many times, only for the rug to be pulled out from under us, again and again.  The list of miracles-in-waiting goes as far back as the dawn of the AIDS crisis itself. Herbal remedies. Rare fish guts. Tribal potions from exotic locales.

And so picking up a new book with that word right in the title, well, you can imagine the skepticism.

CURED: How the Berlin Patients Defeated HIV and Forever Changed Medical Science is exactly as advertised and a little more. Nathalia Holt‘s (below) engaging new book is quite a pleasant surprise, taking a user-friendly approach to its complicated subject. Not only does it provide the timeline of the advancements to date in HIV cure research, it gives us juicy, humanizing details about all of the players involved.

CURED Nathalia picMuch of Holt’s book has the characterizations and forward motion of a good novel. We meet “Christian” (not his real name), the first Berlin patient who has achieved a functional cure to date. We find out exactly what happened in that Berlin clinic when he received his HIV tests results, what he was feeling, how it affected his relationships. We learn that it was Christian, not doctors or scientists, who elected to end treatment after several months (beginning very soon after his infection), leading to the discovery that his virus was under control and has not flared up since.

The same goes for Timothy Brown, who achieved even more notoriety as the later “Berlin Patient” because of the drama of his curative process (he had two bone marrow transplants and nearly died more than once) and because he has been willing to be public about it.

Timothy is the real heart of CURED. His endearing humility draws you to him as the book follows everything from his medical journey to his love life to his surprisingly modest existence today.

(In both Christian and Timothy, minute amounts of HIV virus have been located in their bodies since their treatment, but these reservoirs have not caused health problems. This is known as a “functional cure.”)

All the principle players evidently cooperated with Holt, an HIV researcher herself, and the level of access shows. We not only learn who each of the major researchers are, but what brought them here, what their families are like, and what personal sacrifices they faced along the way. Particularly juicy are the stories of egos and competition among the scientists — and how people who made no contribution at all to various studies scrambled to get their names attached because of the cutthroat world known as academic publications.

Science has never been my thing. I’m not confident writing about it, and intimidated by reading about it. But, except in its last chapters when Holt hurriedly catches us up on the latest research, CURED is easy to follow and has engaging insight into the very real people behind the headlines.

And hey, how cool is it that no one was electrocuted as part of this research?

Mark

 

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