Posts Tagged ‘aids’
Monday, February 23rd, 2015
The annual HIV Cruise Retreat, commonly referred to as “The Poz Cruise,” will set sail this November 8-15 aboard the Ruby Princess, departing Los Angeles and cruising the Mexican Riviera cities of Mazatlan, Puerto Vallarta and Cabo San Lucas.
This year, though, there will be a somewhat ironic special guest on board: Timothy Ray Brown, the first man to be cured of HIV.
“Timothy and his partner will be joining us, and we’re thrilled,” says cruise director Paul Stalbaum, a longtime HIV survivor and travel agent who began organizing the cruise over a decade ago. “He will participate in a presentation and Q&A on cure research and share his story with us. His personal grace and his public education efforts since becoming ‘the Berlin Patient’ are deeply admired. I know our passengers can’t wait to meet him and have some fun on the Mexican Riviera.”
Brown, co-founder of the Cure for AIDS Coalition and Cure Report, maintains that his identity hasn’t really changed since his cure in 2007, the result of a stem cell transplant for the leukemia he was battling at the time. (The transplant donor had the CCR5 gene mutation that blocks HIV from entering human cells.)
While the procedure hasn’t been successfully duplicated in other HIV patients precisely, it has led to advances in gene therapy treatments that incorporate what was learned from Brown’s case.
“Remember, I was HIV positive twice as long as I have been cured,” Brown says about joining the Poz Cruise. “I still consider myself part of the HIV community. I wouldn’t have it any other way.”
“There’s something special that happens when so many people living with HIV are together,” says Stalbaum of the hundreds of cruise articipants. “All the social walls that divide us just fall away. Our happy group of poz cruisers, who are often joined by their negative partners and family members, aren’t concerned with HIV status or age or appearance. It creates an environment where true friendships—and, yes, even some romance—are free to bloom. Our group watches their friend list on social media explode after every cruise.”
The HIV Cruise Retreat brings together people living with HIV, their loved ones and allies for a week of exclusive theme parties, private excursions and educational events. While not a fully chartered ship like RSVP or Atlantis, the parties, events and even dinner arrangements for participants are exclusive.
Otherwise, says Stalbaum, “we mix with other people, just like in real life. And we’re holding hands and feeling proud. We usually commandeer one of the pools on the first day, and it’s quite a sight to watch the other passengers realize we are a colorful group indeed. A lot of the women on board ditch their husbands to hang out poolside with us instead. We’re a lot more fun.”
This will be the first time in seven years that the cruise has departed from the West Coast, and it’s expected to be a sold-out cruise. Special group cabin rates are available until Feb. 28. More information, including video blogs from past cruises, is available at HIVCruise.com or through Paul Stalbaum at (954) 566-3377.
This article was written by Mark S. King and originally appeared in Frontiers Magazine in Los Angeles. Timothy Ray Brown photo: Scott Taber. Cruise tubing photo: Brian Molenaar.
(Building community among those of us living with HIV is a passion of mine. I realize that although the cruise is reasonably priced it is also out of reach for some of my readers, and I hope you will understand my enthusiasm for supporting this event. This will be my 5th year to volunteer as MC of the cruise — I pay for my expenses like everyone else — and it has become a yearly vacation that I truly look forward to. I hope you will check it out! — Mark)
If you are gay, HIV+ and in recovery, have I got the perfect retreat for you. The POZitively Fabulous weekend retreat is now in its 3rd year and growing by leaps and bounds. Created by and for HIV+ gay men in recovery, it offers fellowship, workshops, speakers, and plenty of time to enjoy the gorgeous Cloudland Canyon State Park in Georgia. I’ve attended and it was terrific. Get all the details at SoberPlus.com.
Wednesday, January 28th, 2015
Before my interview with activist Sean Strub, author of Body Counts: A Memoir of Politics, Sex, AIDS, and Survival, let me share a revealing story.
It was late 2011 and my life was in shambles. The breakup of a long term relationship had sent me into a spiral, followed closely by a devastating drug addiction relapse. I had weathered the fallout and taken refuge at my mother’s home in Louisiana.
And then came a phone call from Sean Strub, founder of POZ Magazine and lifelong advocate for those of us living with HIV. We were acquainted but not yet close friends and the request he made during the call surprised me. Would I be willing, he wondered, to come visit him for a few weeks and help get his new HIV anti-criminalization effort, The Sero Project, off the ground?
Sean had read a blog posting I had written about my breakup and relapse, and must have known I wasn’t exactly firing on all cylinders. I was a recovering addict with a trail of wreckage in my recent past, and yet he wanted me to come work with him. Like, in his home.
Within days I drove 1,400 miles to his Pennsylvania town. I managed to get some work done but mostly I piddled around his home office, getting my bearings again while we traded war stories and gossip from across our desks. Sean was passionate about every topic and a great teacher on contemporary HIV advocacy issues.
Before long, the real purpose of Sean’s long distance invitation became clear to me. He didn’t really need much help, but he knew that I did. He saw someone with potential who would benefit from a little mentorship, encouragement, and a friend. And God, he was right. Our time together strengthened and refocused me. Since then, I have heard many stories about Sean Strub taking people under his wing and helping to lift them up to a better place.
My admiration makes it nearly impossible to objectively review his remarkable memoir, Body Counts. I am an unapologetic fan and grateful friend. That being said, you must finish reading this article and go directly to Amazon and buy his book.
Body Counts is one of the most wide-ranging and well written remembrances to come out of the AIDS crisis. It seamlessly combines the social, political, and sexual landscape of Sean’s journey. It moved me to tears more than once, and taught me a lot about what happened behind the scenes during the dawn of the century’s greatest public health crisis.
All that, and there’s a ton of great celebrity stories about people like John and Yoko (Sean was there the night Lennon was shot), Andy Warhol, and a host of colorful others.
Sean agreed to a conversation to discuss everything from his memoir to body image, sexual abuse, the legacy of AIDS, and the state of the HIV community today.
Here is that conversation:
Body Counts is such a marvelous achievement, Sean. So much history here, personal and otherwise, and witnessed from such close proximity. Thanks for not holding back the juicy stuff about politicians and celebrities!
For better or worse, politicians and celebrities are intertwined with the history of the epidemic, in ways both bad and good. My perspective at times is unusual–like when I was running the “Senators Only” elevator in the U.S. Capitol–and I tried to present the humanity, good and bad, of those I write about.
Also, in terms of the epidemic, it was a conscious decision and key strategy to exploit celebrities to gain attention and action in response to the epidemic. Elizabeth Taylor knew this better than anyone and she was amazing at getting others to join her in spending their celebrity capital on behalf of something important.
And you’re our tour guide through those years. I think your criticism of President Bill Clinton’s AIDS response might be surprising to people. Aren’t we supposed to love him?
Others have suggested that Clinton’s post-presidency focus on the global epidemic is an effort to atone for his failing in this regard during his presidency. When salon.com published an excerpt from Body Counts that was about the Clinton Administration, it generated a lot of nasty comments. It was the epidemic driving a generation of gay men out of the closet and into activism that ultimately was critical to electing Bill Clinton, yet as soon as he was elected it seems like the air was let out of our activist balloon.
In some ways I think we–as a queer community–are more effective as outsiders, where we had to learn to survive, than we are as insiders, where we haven’t been as welcome or skilled. When Clinton was elected, many of our leaders became insiders and didn’t take everyone with them.
I’m glad you’re not letting people off the hook. Was it important for you to save our AIDS history from those who might revision it?
Initially the impetus for writing Body Counts came from the realization that, as time passed, there were fewer and fewer of us around from the early days who could tell what happened first-hand. It was also a way of validating my own life. I didn’t grow up wanting to be an AIDS activist; I had other plans, but in the early 80’s my life was hijacked by the epidemic. Writing Body Counts gave me some understanding of why I made the choices I made.
But the more I dug into the history I also saw how those years have been misrepresented or misunderstood, particularly the role of people with AIDS and HIV. Grassroots community efforts are often dismissed, minimized or ignored.
Historical truth is always more complex than the simplified–and sometimes manipulated–version of popular history we are led to believe. The epidemic’s history has been, to an extent, commodified, rewritten to serve some agenda.
I think it is important to have as many first-person accounts, especially from people with HIV who were on the frontlines, so our experiences get documented and preserved. And as time passes, there will be more archives available, with documents from those years that will tell an even fuller picture.
As we get more perspective, the epidemic and our response to it, is understood in new ways and that’s a good thing.
The ongoing theme to your AIDS work, in fact, has been a respect and focus on people living with the virus themselves. You carry that banner fiercely.
I don’t think the LGBT community, or people with HIV, have gotten the credit we deserve for what we did in those early years. How we came together to love and care for each other was something remarkable. We should the world our very best face and what we did then should be celebrated and recognized as a model, worthy of emulation in many kinds of situations. I also know that it was other people with HIV who comforted me, educated me and enabled me to survive.
The book is a reclamation on your body — from shame about it, from infection, from the sexual abuse you suffered. Do you think it’s a common challenge for gay men to love their physical selves?
The title, Body Counts, is an intentional double entendre, referring to the loss of life from the epidemic, of course, but also my personal lifelong struggle for control of my body. It has had many enemies: the Catholic church which taught me that they owned my body, sexual abusers who exploited me, a government that sought to control my sexual expression, HIV itself and even the drugs to treat HIV. It has gotten better over time, but shame-shedding doesn’t happen in an instant, it is incremental and I suspect, for me, will be a lifelong process.
I can’t imagine revisiting some of the trauma you describe in the book, such as childhood sexual abuse and a rape by a roommate. Was it brutal to write?
I wouldn’t call revisiting those memories brutal, but it was at times emotionally draining. Ultimately, it was healthy for me to process pain, hurt, guilt and shame that I had carried for years.
You write that it took 20 years to recognize the rape for what it was. Do we have a problem as gay men seeing ourselves as victims of this sort of abuse?
When it happened I didn’t even think of the word rape as having any applicability to men. I was still so ashamed of my sexual desire and also conflicted about the degree of responsibility I bore for what happened. For many years I blocked out the sexual abuse and sexual violence I had experienced; it made me uncomfortable to think about because I didn’t think there was anything constructive I could do with those memories except feel bad about them.
Now I can look back and see that while I may have been precocious in some ways, I was incredibly naive and vulnerable in other ways. In the process, I not only forgave those who hurt me but I ended up, quite unexpectedly, forgiving myself as well.
You were absolutely on death’s door for a few years, and squeaked through in time for new medications to save you. And you were outright defiant about showing the Karposi’s Sarcoma (KS) lesions that covered your body during that time.
I think if more of my identity and self-worth had been found in my body I might have been more likely to pursue cosmetic treatments for the KS. And the objectification of bodies is practically in the DNA of gay culture. Even as I began to accept my own body, it was within a context that clearly told me the body I had wasn’t a gay ideal. I’m skinny, have no chest and am not especially athletic.
On the other hand, not conforming to that ideal, not being as invested in it, made it perhaps a bit easier when my body become so obviously ravaged by AIDS and, especially, Kaposi’s Sarcoma. Less of my self-identity was in my body, so its decline didn’t degrade my self-worth as much as it might have for others.
I didn’t treat the visible KS lesions because I knew there were no treatments that would slow their growth and I already spent too much time in doctors offices. That was almost unimaginable to many people who were horrified that I had visible lesions and took no steps to even disguise them with makeup.
I make the mistake of assuming people know that AIDS advocacy changed the entire patient/physician dynamic, or that our response to what we endured will forever be remembered. Obviously that isn’t necessarily so, and why books like yours are important.
There is an understanding that AIDS has been different, in many ways, and has had a profound impact on the culture, society, the healthcare system, drug development and approval processes, even geopolitics. I don’t think it is widely understood how different the epidemic might have been had it not been for the self-empowerment movement, or how truly radical those early PWA pioneers were.
While ACT UP has been an important part of my life and advocacy, so too has the advocacy that precedes ACT UP, that set the stage for our movement. That earliest history hasn’t been as well studied or understood and I tried to give some attention to those years in Body Counts. Randy Shilts’ And the Band Played On provide an important and detailed view of the early years from his vantage point in San Francisco; the story from those years in New York hasn’t been nearly as thoroughly explored. Also, And the Band Played On was written before ACT UP came on the scene.
When you first arrived at the offices of a coalition of people with AIDS, you write about having found a place you belonged, at last, even after having begun a business career and worked in politics. What about it struck you so deeply?
Total solidarity. I felt so welcome and safe that it enabled me to overcome the fear of stigma. That’s what I’ve tried to do for others ever since.
What are the greatest threats to people living with HIV today, or at least to the kind of empowerment groups for us that have been so important to you?
Lack of respect for the principle of patient autonomy. This is happening across the board, as public health becomes militarized, disease securitized and treatments more complex and costly. The concept of the physician as a healer, providing individualized treatment, has too often given way to the physician as an extension of and agent of the state and the pharmaceutical industry, treating populations instead of individuals.
You are known to be skeptical of pharma and caution that medication side effects are too often ignored. Some people might find that ironic, given that new medications saved your life. Is that fair?
I think skepticism about pharma, when it was pharmaceutical treatments that saved my life, isn’t ironic but common sense. Anti-retrovirals, like many medicines, are powerful treatments. Anything very powerful can be used in a negative or positive way; the more powerful the more important it is to be careful, cautious and skeptical.
Skepticism saved my life. Had I not been so skeptical, I would have taken more treatments that, in hindsight, we now know would have hurt me more than helped me. I am alive because I was lucky or smart or skeptical enough to refuse pharmaceutical treatments at one point, when they were strongly recommended to me by the medical establishment, as well as because they were available to me and I took them at another point, when I needed them.
The irony isn’t found in me. The irony is that a healthcare system that purports to heal and a scientific establishment that purports to be interested in discovery has so often refused to listen to or learn from those living with the disease. Had our voices been valued more highly, the epidemic would never have gotten as big as it has.
I’m a little surprised that your book is the first memoir by a major imprint about those early years in New York City and the early ACT UP era. What do you make of the recent interest on film about AIDS in the 1980’s, such as How to Survive a Plague and Dallas Buyers Club?
Enough time has past since the worst years that those who survived can reflect with greater objectivity. Many survivors feel compelled to remember the dead and bear witness to what we experienced. That has become a sense of obligation, even a compulsion, for many of us, particularly as we age and realize there are fewer and fewer of us around to speak first-hand about those years.
For many it is a delayed grieving; when friends were dying so fast and in such great numbers it wasn’t possible to fully grieve them. But we filed away that pain, to process later. Now it is later.
The explosion in cultural production in the last few years, the films you mention as well as books and exhibitions, is somewhat analogous to the cultural production following the Holocaust. Not so much in the 40’s and 50’s, but by the early 60’s it had started to grow dramatically. Yet 15 or 20 years past the worst of those days, the memories and words and testimonials start to come forth.
But even Dallas Buyers Club and other works of art haven’t done well with their bottom line. We might be taking a look back, but it isn’t exactly a highly commercial enterprise, is it?
No, it isn’t, to many people anything about AIDS is such a downer they aren’t interested. Many gay men have created lives that have protected them, emotionally, from the pain of the epidemic and they don’t want to be reminded of it.
But I’m not sure we would be in any better position in terms of addressing the epidemic if the books and films about its earlier years were enormously profitable. There is an historical record that, in time, will be vastly more important than how many copies or tickets are sold today.
Body Counts seemingly has everything, from Washington politics to brushes with celebrity to your own sex life, and the book had major endorsements. I will admit I thought it would be a bestseller, and rightfully so. Or at least it should have been.
I suspect every author wishes their book sold better and I’m no exception. But while I didn’t make the NY Times bestseller list, Body Counts has gotten excellent reviews — almost across the board — and hundreds of people who read it have contacted me with appreciative comments, which is cool.
The publisher early on told me she expected the book to have a long sale and she has been proven correct. It is getting assigned in college coursework and continues to sell, even though it has been a year since the original publication date.
College kids are studying your book? That has to be gratifying, and it sounds like the perfect use for your account of this history.
Yeah, that’s cool, isn’t it? I spoke at a dozen colleges and universities last year and found student audiences to be engaged, stimulating and helpful for keeping my own thinking fresh.
The hardcover has a picture of me kissing Michael Misove, my partner who died in 1988 and the subtitle was “A Memoir of Politics, Sex, AIDS and Survival.” For the paperback, the photograph was changed to one of a young and cute me looking directly at the camera. The thought was that the picture of Michael and me, while very sweet, may imply the book is about that one relationship between these two men and if someone wasn’t interested in that they may pass on the book. The picture of just me alone wouldn’t be so narrow.
The subtitle for the paperback was changed to “A Memoir of Politics, Activism and Survival” in the belief that the word “AIDS” may turn off some buyers. That was weird, but I think probably true. My point was and remains to get as many people to read the book as possible, so I was supportive of any change that would help achieve that goal.
So what next for you? I know you’ve been doing a book tour and events.
I want to continue working to help people with HIV find greater agency and empowerment, particularly through support of and strengthening of networks of people with HIV. In time, I think the self-empowerment advocacy will start to blur the lines of specific distinctions between diseases and conditions; it will be about a broader movement to take back healthcare and choices about our health and bodies from the corporate grip that has been so damaging to the lives and health of many.
I’m increasingly aware of the march of time. Is it too soon to ask how you want to be remembered?
There’s no question but that time becomes more precious as one ages and for those of us, like you and me, who have been lucky to survive when so many of our peers did not, it only makes that sense more intense.
It is peculiar to think about how one would like to be remembered because, first of all, no one wants to be remembered for spending much time thinking about how they would like to be remembered. What is important is what I am doing today and if I’m doing that well, it won’t matter how I’m remembered.
I think I’m going to start this piece by telling people about your kindness to me after my breakup. Would that embarrass you?
I’m beyond embarrassment, I think. And I could not be more proud of our friendship.
(Thanks for reading, my friends, and please be well. — Mark)
Tags: Aging, aids, criminalization, culture, gay, help others, hiv, politics, recovery, Sexuality
Posted in Family and Friends, Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease, Prevention and Policy | 4 Comments »
Friday, January 23rd, 2015
For twenty-five years I have been writing about living openly as a gay man living with HIV. Along the way I have spilled secrets, opened up about sex and relationships, highlighted the work of those who inspire me, come clean about my history of addiction and recovery, focused my video camera on international conferences and the lives of HIV negative gay men, and have found myself in some hot water once or twice.
Living out, loud and proud is an enormous privilege I don’t take lightly. There are countless people who don’t have supportive families or understanding workplaces or even friends to whom they can rely. And it is those people who are most often on my mind as I write this blog. Your comments and emails inspire and humble me, and that includes the criticism of my admittedly strong opinions. You make me think twice, very often after the fact, and you can be assured that you teach me.
So my nomination for Outstanding Blog as part of the national GLAAD Media Awards has me excited, flummoxed and feeling reflective. I wouldn’t be a good recovering addict if somewhere in my mind I didn’t feel unworthy. Like many of us living with a shame that never truly washes away, there is a part of me that feels like a fraud.
If you only knew me, it whispers, you wouldn’t accept me. You wouldn’t give me an award. Maybe you wouldn’t love me. It is the sad reverberation of growing up gay, of feeling socially damaged by HIV, of the guilt of having once turned to drugs to block my doubts and fears.
Today, I will not be bowed by misgivings and undeserved shame. I will even indulge my dangerous ego and admit that I’m terribly proud and feel like one of the Oscar nominees I track with religious verve. And that is the simple, elegant value of efforts like the GLAAD awards. They remind us that we’re okay, celebrated even, and it chips away at the internal homophobia we carry with us in quiet places.
The fact that the highly visible GLAAD Awards focus most notably on film and television depictions of LGBT people makes this situation all the more unreal. The glamour of it all appeals to every gay bone in my body.
Will there be a red carpet? Can I lose enough weight to walk it? Can I convince openly HIV positive fashion designer Mondo Guerra to lend me a jacket (I’m working on it)? Can I make a statement about how those of us living with HIV are crafting lives of joy and engagement and responsibility?
It might be more productive to shift the focus away from myself and share with you the other nominees in my category. They surely deserve that. GLAAD does us all a great service by bringing art and resources to our attention that may be unfamiliar to us. I’ve been stalking the other nominated blogs below and the inspiration to be found there has transformed a common platitude into a sincere fact: it is, without a doubt, an honor just to be nominated.
The Art of Transliness
The triumph of visible trans advocates like Laverne Cox makes headlines, but this blog provides insight on the ongoing, day-to-day challenges of the trans community.
My favorite blog name ever. This site devoted to queer women, or “girl-on-girl culture” as they describe it, is a hip blog mixing pop stories and stigma-bashing commentary.
Box Turtle Bulletin
Anti-gay rhetoric doesn’t stand a chance in the face of this site providing news, analysis, and fact-checking.
Holy Bullies and Headless Monsters
Lies in the name of God are still lies. This site analyzes and refutes the LGBT inaccuracies of religious conservative organizations.
Thank you, my friends. I have said that finding my voice through this blog has saved my life, and those words ring especially true today. And in case I don’t have the opportunity for an acceptance speech, allow me to thank the most important person now.
Michael, I love you. Being engaged to a man like you is the biggest reward of them all.
Tags: aids, barebacking, conferences, criminalization, culture, gay, gratitude, hiv, recovery, Recreation, Sexuality
Posted in Family and Friends, Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease, News | 7 Comments »
Tuesday, January 13th, 2015
The first time I contracted gonorrhea, which in my day was affectionately called The Clap, I was 20 years old and had just moved to West Hollywood, California. It was 1981, disco was still thumping in the bars, and the bath houses were packed. My dance card was filled.
When I admitted my telltale symptoms to a friend, he directed me to the local clinic in the heart of the gay strip. The waiting area, filled to the brim with gay men, had the undeniable scent of Brut cologne and testosterone, and despite the circumstances we all cruised one another through sheepish glances.
It was embarrassing but not the worst day of my life. The clinician touched me in private places with rubber gloves and the shot he gave me worked. Life went on.
During my early years of recreational sex in the busy gay mecca, I caught The Clap so many times I called it The Applause.
No one told me I should be using condoms, not in the clinic and not among friends. The very suggestion would have been ludicrous. Half the fun of being gay was the blithe disregard for rubbers. We knew the symptoms of trouble and dealt with it accordingly. An STI (sexually transmitted infection) was an annoying rite of passage and little more. We had not yet met a virus that could harm us in any significant way.
Which brings me to a common objection to the use of pre-exposure prophylaxis (PrEP) for the prevention of HIV transmission. Skeptics of the strategy warn that taking a pill to prevent HIV does not guard against other STI’s and therefore condoms must continue to be used.
When did avoiding every possible STI become the new goal for gay sexual behavior? Syphilis, chlamydia, and gonorrhea are all easily treated and cured. Scary campfire tales of a spreading superbug impervious to all treatment have failed to materialize. The very idea of getting The Clap again just makes me feel nostalgic.
No longer is avoiding HIV the prime objective; we must also now use a condom every time so that we are never exposed to, well, whatever. How many hoops must we jump through in order to fuck in a pleasurable way? We can’t win for losing.
I’m beginning to wonder if the avoidance of pleasure has become the real objective; after a generation of fear and mortality, we don’t see pleasure – and I mean sweaty nasty bodily fluid exploding pleasure – as a basic human need we can enjoy as gay men, much less deserve. Meanwhile, heterosexuals acquire STI’s or get pregnant with the same regularity as always. Our gay sin is always greater.
Whatever moderate concern we once had for contracting an STI (and empathy for those getting one) has been transformed into a fearsome judgment of any repercussions of gay sex, regardless of its actual threat to our health. It’s a shame-based, sex-negative ideology and it is painful to observe, particularly within my own community.
There are many ways to avoid HIV infection that can still give you an STI. That’s true. And every person should engage in sober reflection and make their own assessment of what risks they are willing to take. I am a proponent of “shoot the alligator closest to the boat,” meaning, prioritize the risk and act accordingly.
Gay men who take steps to avoid HIV practice a number of strategies: they choose PrEP, or limit themselves to oral sex with partners whom they don’t know, or they only top, or they know their partner is undetectable, or they are themselves on successful treatment. All of these methods can prevent HIV transmission but can still expose someone to an STI.
I consider the man who employs these strategies, and maintains a relationship with his health care provider to monitor any infections, a success story. I have no interest in telling him to jump through a few more hoops if he wants to be truly, totally, super safe from all of life’s ills. There is a cost to being human and of the pleasures we seek, whether it’s sex or fast cars or that second piece of cake.
Unfortunately, because the topic is gay sexuality, it tends to make some of those alligators appear much larger than they really are.
Tags: A Place Like This, aids, barebacking, culture, gay, hiv, physician, serosorting, Sexuality, testing
Posted in Gay Life, Living with HIV/AIDS, My Fabulous Disease, Prevention and Policy | 33 Comments »
Tuesday, January 6th, 2015
They come from different cultures and regions of the world, but these fifteen HIV activists all share one important trait: a fierce devotion to HIV issues and a commitment to leave their mark on 2015.
Their advocacy has been noticed by some of the most prominent people in the HIV arena, so it seems fitting to allow some leading advocates to weigh in on each member of the list.
Load these advocates onto your Twitter feed or follow them on Facebook, and keep a close eye on what they have in store for the new year. If you are working in your community to make life better for those with HIV or to prevent new infections, please consider yourself an honorary member of this group. Thank you for your work!
“Indigenous People are those directly descended from a land that they have no political power over,” says Marama Pala. “Asking for consideration as a vulnerable population reveals another layer of discrimination and racism that speaks to the overall injustice of being born indigenous.”
She could well be speaking of Native Americans, but Marama is talking about her experience as a New Zealand Maori, the first people of New Zealand.
Marama was the first Maori woman to publicly disclose her HIV status, and her bravery has resulted in her becoming a powerful advocate for Maori and marginalized people. She serves on a multitude of foundations and networks devoted to raising the voices of indigenous peoples around the world and has held key positions in the planning of the last several international AIDS conferences. Her influence in 2015 will be no different.
“For generations indigenous peoples have suffered a genocidal impact from diseases ranging from influenza to small pox,” she said. “HIV is a modern day scourge that is harder to fight because it involves sex – a culturally taboo subject.”
“Marama is the rare blend of spirit, passion, intelligence and outspokenness that is needed to advance the issues of women and indigenous cultures affected by HIV around the world,” said Brent Allan, Executive Officer of Living Positive Victoria, Australia’s largest organization for and by people with HIV. “She is an outstanding example of the heart and soul inherent in our sisters living with HIV.”
Writer and occasional bomb thrower Josh Kruger reveals himself through a fierce, revelatory prose that lays bare all that he is or has ever been. He began writing while in a homeless shelter in 2012, and has since shared his experiences with crystal meth addiction, living with HIV, and the perilous gay dating pool. His work has wit and intimacy, and he’s been known to infuriate readers. In other words, he is a writer that demands to be read.
His column, “The Uncomfortable Whole,” appears in the Philadelphia Weekly and addresses any number of social ills, such as drug abuse, HIV stigma, and homophobia. He has also written for The Advocate and HIV Plus Magazine, and blogs regularly as a gay man with HIV for TheBody.com.
Too often, writers dealing with their own HIV infection temper their feelings or paper them over with political correctness, which is why Josh Kruger is someone to keep watching. This is not a writer who second guesses himself.
“Josh is a rare talent,” said Mathew Rodriguez, the community editor of TheBody.com who is making his own splash through his PrEP advocacy and his essays on race and gay community. “Josh’s writing seems almost contradictory — sharp yet breezy, challenging yet easy to read, hungry yet nourishing. He is unabashedly opinionated, and the best part is that we have only just seen him begin to stretch his skills writing about HIV. What will we see next? I’m not sure, but my attention is already rapt.”
“My role can best be described as an agitator,” Tommy Luckett says, and that’s quite a statement coming from an openly HIV positive transgender woman living in Little Rock, Arkansas. But Tommy’s passion and growing voice defy simple geography. She serves on the board of the Arkansas Transgender Equality Coalition and the health department’s Quality Care Advisory Board, yet still has time to advocate against Arkansas’ HIV criminalization statutes.
Tommy gracefully rejects stereotypes about transgender women. “I was in a relationship when I contracted HIV from my partner,” she said. “A common misconception is that trans women place themselves at high risks of contracting HIV by doing sex work and that’s not always the case. In order to have shelter, some trans women are forced into sex work.” Tommy doesn’t judge women making desperate choices, and even advocates for their safety and well-being. “Being caught with a certain number of condoms is against the law in some states,” she said. “In essence, the laws are contributing to the spike of HIV cases in the transgender community.”
Cecilia Chung, a leading transgender activist who serves on the Presidential Advisory Council on HIV/AIDS (PACHA), is a big fan of Tommy’s growing influence. “In the HIV sphere where voices of trans women living with HIV are most under represented, I am inspired by emerging leaders like Tommy. She brings a transwoman of color perspective from the southern states and a personal story that reflect the current landscape of the epidemic.”
Some consider him the best kept secret in HIV treatment activism. James Krellenstein has presented to the FDA and the CDC, mapped strategy alongside iconic activists, and become a respected voice within ACT UP New York City. What makes his growing influence all the more remarkable is the fact that James is 23 years old.
James recently spearheaded a successful campaign to convince the FDA to approve the Alere rapid HIV test (which can detect HIV sooner and more accurately than other tests) for use in non-laboratory settings like bars, clubs, or your local gay pride festival. The effort illustrates James’ dedication to improved HIV surveillance and greater funding and access to effective HIV prevention tools.
James co-founded ACT UP New York’s Prevention of HIV Action Group (PHAG) and regularly collaborates with Mark Harrington, the director of Treatment Action Group and no slouch in the brains department himself.
“James represents the future of AIDS treatment activism,” said prominent ACT UP member Peter Staley, who was profiled in the Oscar nominated documentary How to Survive a Plague. “This movement’s greatest legacy is a willingness to let science drive our health justice agenda. James reminds me of a young Mark Harrington or Spencer Cox – one of those rare wiz kids with a complete lack of intimidation about becoming the activist expert even the Anthony Fauci’s of the world admire.”
It can be disheartening to simply live as a sexually active gay man with HIV, and Australian Nic Holas doesn’t want to just counter that stigma. He wants to smash it. As a writer and activist, Nic co-founded The Institute of Many, a social support network of people living with HIV, and has spoken with fierce transparency about navigating the sexual landscape of the gay community.
Nic has made countless appearances on national television, documentaries, radio and online discussing HIV and is also a peer educator, an ENUF Ambassador, an ENDING HIV ambassador, and a facilitator for the Positive Leadership Development Institute Australia. And he’s just getting warmed up.
In 2015, Nic plans to continue to grow The Institute of Many, and deliver a challenge to its growing membership to take action on advocacy efforts.
“Nic represents a new generation of smart HIV activists who neither feel apologetic about their status nor want to use it to buy into a sex negativity which would deny the particular thrills and experiences of being a gay man,” said Dennis Altman, Professorial Fellow in Human Security at La Trobe University and author of more than a dozen books, most recently The End of the Homosexual? “This year, Nic emerged as a formidable spokesperson for people who are positive, and, equally important, as someone who reminds us that social justice demands concerns for more than those in our immediate tribe.”
Of all the various populations of people living with HIV, it’s ironic that none may be as misunderstood as those who have faced HIV stigma since the hospital delivery room: those born with HIV. Los Angeles children’s advocate Grissel Granados hopes to change that.
Grissel is looking forward to the completion of a documentary she has produced, We’re Still Here, that focuses on her journey trying to make sense of her experience as a young adult born with HIV. She believes the project can help other people find community where there wasn’t one before. “For the first time on screen,” says Grissel, “people who were born with HIV are telling our stories in our own words and on our own terms.” The trailer for the film was just released.
Her own life circumstance has clearly informed her work at Children’s Hospital Los Angeles, where she works in the Division of Adolescent and Young Adult Medicine, and Grissel intends to use her new seat on the President’s Advisory Council on HIV/AIDS to take on health disparities among youth and young adults.
“Grissel is a fierce advocate who leads from the heart,” said Naina Khanna, the influential director of the Positive Women’s Network USA. “She is a skillful bridge builder that finds connections between complex issues – ranging from immigration to sexual rights and HIV. I am really excited to see where Grissel’s future will take her.”
When Kerry Thomas addressed the “HIV Is Not A Crime” conference in Grinnell, Iowa in 2014, he did so via a phone call from his prison cell in Idaho. And his remarks held the attendees spellbound for nearly an hour.
Kerry is presently serving 30 years for “HIV non-disclosure” (or not telling his sex partner he is living with HIV) even though he used condoms, had an undetectable viral load, and did not transmit HIV. His case has become a rallying cry for advocates around the world, and Kerry’s grace and humility under extraordinary circumstances have only increased his profile.
“Kerry has demonstrated courage, strength and leadership from behind the walls of prison,” said lifelong activist and author Sean Strub, founder of The SERO Project, a network of people living with HIV working to reform HIV criminalization statutes. “He is committed to justice for everyone unfairly prosecuted because of their HIV status, even as he struggles to find justice for himself.”
Kerry has a hearing in March on a motion for post-conviction relief. If he has been this inspiring from behind bars, just imagine his effectiveness as a free man.
A year ago, Ken Almanza might never have believed he would find himself interviewed by a television station in the Netherlands or appearing on the front page of the Los Angeles Times. But the rising activist’s engaging and personal video blogs about beginning PrEP (pre-exposure prophylaxis) has endeared him to advocates everywhere.
The social repercussions Ken experienced because of his blogs about PrEP haven’t slowed him down. He has taken on a new role at APLA Health and Wellness with their Crystal Meth Harm Reduction program – another focus of advocacy for Ken, who produced a film about his brother’s battle with addiction and the effect it had on his family. Now, APLA Health and Wellness has plans to incorporate PrEP education into their crystal meth program, which would combine two crucial issues that are important to Ken.
“Very few leaders can bridge the gap between intelligence, activism, and sheer magnetism,” said Damon L. Jacobs, a nationally recognized PrEP advocate and therapist in New York City, who believes that Ken has a “passion for breaking the glass ceiling against imposed limits on sexual education, personal freedom, and gay Latino expression.”
BENJAMIN T. Di’COSTA
When Benjamin T. Di’Costa saw the treatment a transgender friend received while in the hospital last year, it changed him forever. Benjamin, 24, stayed by his friend’s side and witnessed a real lack of trans-competent care by medical providers. The experience only bolstered his commitment to the rights of transgender people.
Demonstrating empathy for others is nothing new to Benjamin, who is HIV negative and has worked as a Youth and Transgender Specialist for Latinos Salud, the largest minority HIV/AIDS organization in the state of Florida.
Along the way Benjamin has raised his voice as an HIV negative cisgender bisexual male by creating posts and videos for The Poz+ Life, a site devoted to sharing what it is like to be affected by HIV and other disparities. His social media (and selfie) skills are first rate, and Benjamin’s voice will doubtlessly grow stronger in 2015.
“Benjamin is one of the most promising young advocates on the scene,” said Jack Mackenroth, the reigning king of social media who just had another triumph with his #WeareALLclean HIV stigma campaign. “He has a real humility about him, and his willingness to reach out and understand other communities is exactly the kind of thoughtful engagement that brings people together. Too many of us focus on our differences, and Benjamin shows that there is a better way.”
In the city of Midrand Gauteng in south Africa, Yvette Raphael stays busy running her catering company. “I do it because I love making people happy and every meal is prepared with love,” she says. Love is also something Yvette shares generously with her extended family, including three young girls living with HIV for whom she serves as guardian and mentor.
None of these responsibilities, though, have kept her from becoming an emerging voice for women living with the virus.
Diagnosed with HIV in 2000, Yvette contributes to a number of national and global efforts, including working in support of the U.S. President’s Emergency Plan for AIDS Relief (PEPFAR), the Campaign to End AIDS, and serving as a 2014 AIDS Vaccine Advocacy Coalition (AVAC) Fellow associated with Johns Hopkins University. Her influence is growing faster than a baking souffle.
“Yvette is a rare breath of fresh activism in a time in the AIDS movement that needs more advocacy and policy change, not less,” said Dazon Dixon Diallo, founder of Sisterlove and one of the preeminent global voices for HIV among women. “She comes to the movement with a fierce brilliance and a fearless voice for women, youth and the African LGBTQ community. Yvette is a young, single mother who works hard to defend and protect the human rights of all, especially young girls. She rocks on all fronts!”
ERIC PAUL LEUE
Few people can hold a conversation about their leather man titles and Tenofovir disoproxil fumarate drug levels at the same time. But that’s exactly what you get with Mr. Los Angeles Leather Eric Paul Leue, a self-motivated transplant from Berlin who has been able to generate great conversations (and often controversy) around kink, sex, PrEP, pleasure, and science.
Eric famously broke ties with the AIDS Healthcare Foundation, for whom he had been featured in an HIV testing campaign last year, when the director of the agency stated his (widely maligned) objection to PrEP as a prevention tool. Since then, the current Los Angeles Mr. Leather has put his activism into overdrive, even creating a petition to have the director of AIDS Healthcare Foundation removed.
When discussing PrEP, its side effects and efficacy, the devil is the details and Eric knows nearly all of them. His easy going style during public events — including a discussion about PrEP with at least one skeptic at a 2014 World AIDS Day forum in Palm Springs – demonstrates that Eric can find common ground and show respect for those who don’t share his views entirely. For a topic rife with conflict and antagonism, that is no small feat.
“In his twin roles as Director of Sexual Health and Advocacy for Kink.com, Eric has expanded his HIV prevention efforts into the underserved communities of kink and leather,” said author and quintessential leather man Guy Baldwin, M.S., who was inducted into the Leather Hall of Fame in 2012. “The world of radical sexuality is lucky to have the force of nature that is Eric Leue.”
(Photo credit: Eric Schwabel)
If you did not vote in the last midterm election, don’t mention that to Tony Christon-Walker. You’ll get a passionate lecture on why local and state elections are actually more important than presidential ones. And make no mistake, the man knows what he is talking about.
Working as a Civic Engagement Coordinator for AIDS Alabama, Tony understands firsthand the damage state politics can do to those living with HIV. He has seen Alabama, one of our poorest states, refuse to expand Medicaid, effectively denying health insurance to those who need it most (of the estimated four million people who fall within this coverage gap, the vast majority are in the South). Tony devotes his energies to getting people registered, restoring the voting rights of ex-felons, and making sure you know that every election matters.
Advocacy has been a lifelong pursuit for Tony, who once learned Spanish just so he could communicate with his clients at AIDS Alabama more effectively. In 2015, the newly married advocate will be working to create coalitions among those who are engaged in political efforts – immigration, HIV, healthcare reform – that are closely aligned.
“I’ve watched Tony with a sense of admiration and awe for a number of years,” said Kathie Hiers, a fellow Alabamian who serves as president of the National AIDS Housing Coalition. “He exemplifies the very best of grass roots activism, and proves the adage that all politics are local. Thank goodness for Tony, because he is special.”
It is tempting to say that Marco Castro-Bojorquez is the hardest working advocate on the scene, but one thing is for sure: he is among the busiest.
Born and raised on the Mexican Pacific coast, Marco left his country for political reasons and has lived in California for the past 20 years. And he hasn’t exactly been wasting his time. Marco is a community educator at Lambda Legal, the oldest and largest national legal organization committed to achieving full recognition of the civil rights of LGBT people and people with HIV. He has taken particular interest in the plight of immigrants and migrants living with HIV and has begun plans to create a support network for them.
Somehow, Marco has managed to create several short documentaries in his spare time, including the upcoming El Canto del Colibri (“The Hummingbird Song”), a film about Latino fathers dealing with having an LGBT member in the family. It will premiere in 2015 and was inspired in part by a pilot family acceptance program he has led at Lambda for the last three years.
“Marco is such an amazing individual,” said Bamby Salcedo, President of Coalicion Translatina, a national advocacy organization serving trans Latina immigrants living in the United States. “He just helped me organize a protest about violence against trans women of color. What drives Marco is his passion for the betterment of everyone.”
Growing up on the hard scrabble streets of Detroit, Guy Anthony had no role models around him as a “black, slightly effeminate gay man,” he says. And that’s what his growing advocacy voice has been all about. The young activist and author (Pos(+)itively Beautiful: A Book of Affirmations, Advice & Advocacy) wants to provide the kind of compassionate guidance to others that he never had.
Guy facilitates the only support group for young, HIV positive black men in Washington, DC. It’s one of his duties as a treatment adherence coordinator at Us Helping Us, an agency addressing the needs of gay men of color. The agency has become a hub for HIV treatment, prevention, and mental health services.
Mental health is something Guy intends to move to the forefront of his efforts in 2015, and he begins the year with a splash by speaking at the National AIDS Education and Services for Minorities conference in January. He is convinced that mental health services are critical to those who test positive or are at risk, and wants to make it synonymous with case management.
“It’s exciting to see Guy included on this list,” said Paul Kawata, director of the National Minority AIDS Council and the longest serving national HIV agency head in the country. “He’s a poised, charismatic young man who has accomplished a multitude of things, and he’s not even 30! Guy is surely one to watch in 2015.”
This young, brilliant German researcher is obsessed with t-cells, and thank goodness for that. As Chief of the Cellular Immunology Section at U.S. Military HIV Research Program, Hendrik Streeck is working to figure out how these important cells – which serve as the gateway to HIV infection – react during initial infection, and how they might be manipulated by a potential vaccine.
In other words, Hendrik wants to end HIV as we know it, by getting to the bottom of how t-cells work – and how a vaccine can prevent them from ever getting infected with HIV. It is a segment of HIV research that requires tremendous creativity and technical wizardry, and Hendrik is just one of many researchers leading the charge.
“Hendrik is unique among researchers in his ability to combine expertise in the basic biology of the virus with innovative HIV therapies,” said Nathalia Holt, a fellow HIV researcher and author of CURED: How the Berlin Patients Defeated HIV and Forever Changed Medical Science. “In 2015 Hendrik will leading a new institute at the University of Duisburg-Essen in Germany dedicated to finding a cure and vaccine for HIV. We can expect big things from him this year.”
Tags: aids, barebacking, conferences, criminalization, culture, gay, help others, hiv, meth, research, Sexuality, testing
Posted in Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease, News, Prevention and Policy | 4 Comments »
Friday, November 28th, 2014
My brother Richard smiles a lot. He has an easy laugh. But there was a time, years ago, when he held a poisonous drink in his hands and begged his dying lover not to swallow it. A time when Richard held the concoction they had prepared together and wept.
Emil couldn’t wait. He took the drink from Richard quickly, because the release it offered was something more rapturous than the appeals of his lover of thirteen years.
It was Emil’s wish to die on his own terms if living became unbearable, a promise made one to the other. When that time arrived, however, Richard wanted another moment, just a little more time to say, “I love you, Emil,” over and over again, before the drink would close Emil’s eyes and quietly kill him.
Richard has a charming store in my hometown today, where he sells collectibles and does theater in his free time. The drink was consumed over twenty years ago.
There were people who displayed remarkable courage then. People who lived and died by their promises and shared the intimacy of death, and then the world moved forward and grief subsided and lives moved on. But make no mistake, there are heroes among us right now.
There is a shy, friendly man at my gym. There was a time when his sick roommate deliberately overdosed after his father told him that people with unspeakable diseases will suffer in hell. My gym friend performed CPR for an hour before help arrived, but the body never heard a loving word again.
There is courage among us, astonishing courage, and we summoned it and survived. And then years passed. We got new jobs and changed gyms.
There was a time when old friends called to say goodbye, and by “goodbye” they meant forever. When all of us had a file folder marked “Memorial” that outlined how we wanted our service to be conducted. When people shot themselves and jumped off bridges after getting their test results.
There is profound, shocking sadness here, right here among us, but years went by and medicine got better and we found other lives to lead. Our sadness is a distant, dark dream.
My best friend Stephen just bought a new condo. He’s having a ball picking out furniture. But there was a time when he knew all the intensive care nurses by name. When a phone call late at night always meant someone had died. And just who, exactly, was anyone’s guess.
Stephen tested positive in the 1980s, shortly after I did. A few months after the devastating news, he agreed to facilitate a support group with me. We regularly saw men join the group, get sick and die, often within weeks.
Watching them disintegrate felt like a preview of coming attractions. But Stephen was remarkable, a reassuring presence to everyone, and worked with the group for more than a year despite the emotional toll and the high body count.
There is bravery here, still, living all around us. But the bravest time was many years ago, and times change and the yard needs landscaping and there’s a brunch tomorrow.
There was a time when I sat beside friends in their very last minutes of life, and I helped them relax, perhaps surrender, and told them comforting stories. And lied to them.
Jeremy lost his mind weeks before he died. Sometimes he had moments of sanity, when we could have a coherent conversation before his dementia engulfed him again. It was a time when you were given masks and gloves to visit friends in the hospital.
He was agitated with the business of dying, and told me he couldn’t bear to miss what might happen after he’d gone. I had an idea.
“I tell you what,” I offered, “I’m from the future, and I can tell you anything you would like to know.”
“OK then, what happens to my parents?” he asked. I thought it might be a distracting game, but Jeremy’s confused mind took it very seriously.
“They went to Hollywood and won big on a game show, so they never did need your support in their old age,” I answered. He barely took the time to enjoy this thought before his hand grabbed my wrist, tightly, almost frantically. He pulled me closer.
“When…” he began, and a mournful sob swelled inside him in an instant, his eyes begging for relief. “When does this end?” There was an awful, helpless silence. His eyes beckoned for a truth he could die believing.
“It does end,” I finally managed, although nothing suggested it would. “It ends, Jeremy, but not for a really long time.” He digested each word like a revelation, and slowly relaxed into sleep.
There is compassion here, enough for all the world’s deities and saints acting in concert. Infinite compassion for men who lived in fear and checked every spot when they showered for Kaposi sarcoma, and for disowned sons wasting away in the guest room of whoever had the space. But we get older, and friends don’t ask us to hold their hand when they stop breathing, and the fear fades and I bought new leather loafers and the White Party is coming.
The truth is simply this, and no one will convince me otherwise: My most courageous self, the best man that I’ll ever be, lived more than two decades ago during the first years of a horrific plague.
He worked relentlessly alongside a million others who had no choice but to act. He secretly prayed to survive, even above the lives of others, and his horrible prayer was answered with the death of nearly everyone close to him.
To say I miss that brutal decade would only be partially true. I miss the man I was forced to become, when an entire community abandoned tea dances for town hall meetings, when I learned to offer help to those facing what terrified me most.
Today, the lives of those of us who witnessed the horror have become relatively normal again, perhaps mundane. We prefer it. We have new lives in a world that isn’t choking on disease.
But once, there was a time when we were heroes.
(I was honored to receive an award from the National Gay and Lesbian Journalists Association for this piece in 2007, written to commemorate World AIDS Day. It has since become my annual post to commemorate the day. Here’s to a joyous and healthy holiday season for us all. — Mark)
Two Great Ways to Participate in World AIDS Day!
Our friends at TheBody.com have a fun social media campaign known as #RedRemindsMe, and it’s pretty easy. What does the red in the ribbon remind you of? Take a photo of something red, use the hashtag #RedRemindsMe, and post it on social media like Twitter, Facebook or Instagram — or post it directly to the World AIDS Day page on TheBody.com. You have until December 12, and the most interesting images will be awarded fabulous prizes!You can get all the details right here.
The cyber dynamo Jack Mackenroth is at it again. This time he is breaking the internet with his HIV stigma campaign, #WeAreALLClean, another photo-based social media effort. It addresses the ill-advised habit of people saying they are “clean” when they are HIV negative, which suggests that those living with HIV are somehow “dirty.” I wrote about this annoying phenomenon in my post from 2012, “The Stupid Question: Are You Clean?” Jack’s campaign is exploding with shots both sexy and demure, and even some funny ones like my own (above). Turn on the shower and get out the camera phone!
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.
“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.
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
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.
That 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.
What 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.
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
No 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
The 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.
Always 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
With 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
There’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.
Tags: aids, barebacking, conferences, criminalization, culture, gay, help others, hiv, Recreation, research, Sexuality
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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.
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!
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!
Tags: aids, conferences, criminalization, help others, physician, research, Sexuality, testing
Posted in Gay Life, Living with HIV/AIDS, My Fabulous Disease, News, Prevention and Policy | No Comments »