Posts Tagged ‘culture’
Tuesday, August 18th, 2015
Any campaign that blends living with HIV with a sense of empowerment and joy always grabs my attention. Stigma remains one of the most damaging forces in our struggle to both combat new infections and support those of us with the virus.
Australian Nic Holas 33, co-created the social and advocacy platform for people living with HIV, The Institute of Many (TIM) only weeks after he tested HIV positive in 2012, and it nurtures exactly the kind of peer support that so many advocates find the most effective.
And now, TIM has launched The Wizards of Poz, a social media campaign that celebrates people living with HIV who are taking charge of their lives.
Nic and I spoke about his Wizards of Poz campaign, the Aussie epidemic, “glamorizing” HIV, and a certain sexy monkey.
So, Nic, you’ve taken one of the most iconic films loved by the gays… and made it gayer. That’s no small feat.
Thanks! It was so much fun. The campaign all started from a joke that Jeff Lange (TIM’s American-based co-founder) and I had – namely that I was the Wicked Witch of TIM who stirred trouble, and he was the Good Witch who would just float down every once in a while, smile and leave! When we started to dream up what the campaign looked like, we wanted to extend that image to other members of TIM, and honor their contribution – as well as send a new message to the wider HIV community.
I also like the playful way in which you take subcultures such as queers, radical fairies, sissies, and leather queens and make them something to be exalted and enjoyed.
Those subcultures exist, and they’re all valid! With this campaign, we’re trying to celebrate all the diverse ways queer culture presents itself, in a way as a reaction to the pressure for us to “be normal” at the moment.
I love that a woman is the lioness.
It was so important to me that Abby Landy be our lioness. Positive women are very underrepresented in Australian media depictions of poz living, or when they are, it’s often a betrayal/victim narrative. Abby has been very brave to step into the spotlight to tell her story, and I thought turning her into the anything-but-cowardly lioness was a fitting tribute.
How are racial demographics different down under? Here in the United States, including people of color in campaigns like this is important.
This is something that was a bit of a struggle. I could see when I was amassing our “cast” that it lacked diversity. I wanted to pay tribute to the TIM members who had put themselves out there in the media for TIM, but what that has helped me realize is what sort of narrative the media is looking for in Australia, or rather which narratives are being excluded. We have a burgeoning population of Sub-Saharan African migrants and refugees in Australia, plus Asian international students and migrants, and of course our Aboriginal and Torres Strait Islander First Australians. Those communities and their experiences with HIV need to be honored.
I laughed but wasn’t a bit surprised to see Theodore, my hottie Aussie cameraman from my video reports at AIDS2014 in Melbourne, half naked and on his hands and knees! Thank you for completing the Theo fantasy shared by most everyone who meets him.
Ha! It’s an honor and a privilege to find ways to bring Theo’s bare ass to the world.
In the materials for the campaign, you speak about “paying rent on our privilege to be HIV+ in Australia in 2015.” I like the throwback to those who came earlier, and the sense of gratitude for our lives today. Tell me more about that.
“Paying rent on our privilege” is one of TIM’s core beliefs. The movement started because Jeff (the Good Witch) and I weren’t that knocked about by our diagnoses. For me, that meant that I owed it to the ones who fought and worked to give us that freedom, and to those diagnosed alongside us who still consider HIV to be a life-limiting event (not to mention of course the millions of PLHIV around the world who cannot access treatment, who are criminalized, and discriminated).
And oh my dear, you have to paint me a picture of what the photo shoot was like. I imagine strange colors and fur and feathers and exposed skin all over the place. And a lot of laughs.
Oh God, the shoot was ridiculous! I’ve done my fair share of wild shoots in the past, and I knew how long things take and how mad it can get. This is the first time though I’ve had to art direct something while being painted Wicked Witch green! The incredible thing was that practically everyone on the shoot was HIV+, and if they weren’t poz they were dating someone that was and got roped in to help! It’s a testament to the creative power and community spirit of the poz universe.
Have you had any negative reactions to the campaign?
Some people have criticized the campaign saying it glamorizes HIV.
Oh. That again.
It’s ridiculous. The campaign glamourizes HIV+ people. And why shouldn’t we feel glamorous and fuckable and hot? If you can’t tell the difference between making poz people feel good about themselves and making HIV seem “attractive,” then you can’t see us beyond our status. And that makes you a pozphobic fool.
What is the state of the HIV epidemic in Australia, by the way?
There are approximately 26,000 people diagnosed with HIV here. One of the leading responses has been needle exchange programs and sex worker empowerment, which means gay men are the main affected population (not the only one, of course). There are virtually no AIDS deaths any more due to treatment uptake in the 90% because of universal healthcare. So, we have the luxury of focusing on stigma.
As progressive as Australia is, many people will be surprised to learn that pre-exposure prophylaxis (PrEP) isn’t available there.
PrEP isn’t an inevitability here. Truvada still needs to be approved for use as PrEP, then put on something called the PBS (Pharmaceutical Benefits Scheme) so anyone can access it. It is still two years away, at least.
Is TIM limited to those in Australia? There may be people elsewhere who see this campaign and want to join in the online social support you offer.
The TIM group is global! It’s all back to the “paying rent on our privilege” thing. The TIM digital space (a private group on Facebook) not only lets people find community, it can put our HIV into perspective. As I’ve had to say in the past, “TIM wasn’t set up to help you, it was set up so we could help each other.”
That’s great. If the FB group is private, how might people who read this story join the group if they are interested?
Thanks for this work, Nic.
(Campaign models are all members of The Institute of Many, and include Sebastian Robinson as Scarecrow, Dean Camilleri as Tin Man, Charlie Tredway as Dorothy, Jeff Lange as Glinda, Theodore Tsipiras as Winged Monkey, Abby Landy as the Lioness, and Nic Holas the the Wicked Witch.)
Tuesday, July 7th, 2015
“We ask ourselves, ‘Who am I to be brilliant, gorgeous, talented and fabulous?’ Actually, who are you not to be?” — Marianne Williamson
The first time I met Amy Ferris, several years ago, she cupped my jawline in her hands and gave me a kiss full on the lips. There were none of the usual pleasantries or the polite distance maintained by a new acquaintance. Instead, she kept my face in her grasp and she told me I was incredibly important. And a hero. Those are the words she used.
I responded to that first meeting as any reasonable person would. I doubted her enthusiasm and her strident belief that I am all that special. No one is worthy of so much fuss. And it did cross my mind that Amy Ferris might not be, well, for real.
It turns out that Amy is a perfectly functioning human being who believes that you, and I mean you, you there reading this, are amazing beyond belief and have the potential to change this world. Or, as she might write in one of her morning Facebook postings, “You. CAN. Change. This. Fucking. World.”
She has demonstrated her powerful talents many times over as a celebrated author and screenwriter. Her smashingly successful book, Marrying George Clooney, became a rallying cry for women everywhere who were facing down middle age and needed Amy’s funny, dirty, and emotionally raw chronicle of a “full term in menopause prison.” In her most recent book, Dancing at the Shame Prom, she curates stories from women who unburden themselves of secret, shameful events. Amy may be a loving earth mother, but she isn’t afraid to cut to the bone.
Last year, Amy asked me to contribute to a new book she was editing. By then she had become an intimate of mine – there is no choice, really, it is part of the social contract when you meet her. Amy believed, fervently of course, that I had something to offer Shades of Blue: Writers on Depression, Suicide, and Feeling Blue, an anthology that would tackle the subject through first-person accounts and help those suffering from depression.
I harbor epic self-doubt, so being included in a batch of well-known writers in a major fall release brought my uncertainty charging forward. Amy convinced me otherwise, of course, and her belief isn’t simply encouraging. Five minutes in her company is intoxicating. You wonder if you should shake it off and then hope you never do.
My essay for Shades of Blue, “Suicide: A Love Story,” is an intimate and explicit glimpse into the saddest, darkest days of AIDS. It recounts the night my brother, Richard, helped his terminally ill lover kill himself, and the destructive grief that haunted Richard for the next several years.
Amy responded to my piece with grateful emails and Facebook posts of high praise, writing that she couldn’t stop “ugly crying” and was as convinced as ever that the book will open hearts and change lives.
I have stopped questioning the sincerity or utter authority of Amy Ferris when it comes to these things. We define visionaries only in retrospect, as if we couldn’t possibly be watching someone extraordinary in real time. What if powerful people don’t all live somewhere beyond our reach but right here, in our circle of friends? What if that person might be you?
Knowing Amy, especially when I revisit our time together and her seductive certainty, helps me believe in myself more. It makes no sense to doubt that Amy Ferris might change the world when she has already changed mine.
At my wedding this year, Amy radiated her usual joy, kissing everyone in sight like a bee pollinating in the height of spring. When Amy kisses me now, I kiss her back, and I hold her embrace for as long as the woman wants.
I caught her attention at the reception and invited her to sit with me so I could make an introduction. “Amy, this is my brother, Richard,” I said. “I wrote about him in my essay for your book.”
The realization of who Richard was, the tortured story from his past and his present day joy and resilience, washed over Amy in a transparent swell of emotion. Her eyes filled with tears.
And then, Amy Ferris reached forward and took my brother’s face in her hands. As she looked at Richard with poignant recognition, her fingers lovingly caressed him in a familiar, healing embrace.
Monday, June 1st, 2015
June is Pride Month in the LGBT community, and I was honored to be asked by Visual AIDS to curate a “web gallery” on the topic. Immediately, I considered a question that I had once posed to readers of my blog.
If living with HIV is nothing to be ashamed of, is it something to be proud of?
It was a really interesting exercise to explore this question, and I hope you will head over to Visual AIDS to check out the exhibit online. Visual AIDS has thousands of images of artwork that represent the artistic expression of hundreds of artists living with HIV.
Of course, including these artists in my exhibit meant that I was assigning meaning to their work in a way they may never have intended. That’s okay. Art is gloriously subjective. In the image Self-Enforced Disclosure (Greg Mitchell, 2007) above, I could help but believe that a man who would tattoo his HIV status on his body did not do it to shame himself. But is it an act of pride?
From my curator statement:
No one should be marked or shamed for living with HIV. But, should someone claim to be proud of being positive, there is a lingering, implicit threat to the statement, as if their pride is untrustworthy, or worse, that having the audacity to feel proud of living with the virus must mean they want to infect everyone else.
We must reject the stigma that labels people with HIV as predatory, irresponsible, and lacking in self-respect. Being proud of all that we are is hardly the same as wishing it on others.
I hope you will check this out and share your thoughts.
p.s. My writing is my artistic expression, and I really appreciate the response I have received to my essay in the new June issue of POZ Magazine, “Surviving Life Itself.” The piece reflects on my relevance, and lack thereof, as a 30-year survivor of HIV, and what kind of impact others like myself can have in the here and now. I hope you will grab a copy at your local clinic or pharmacy, or read it online here.
Monday, May 25th, 2015
This post will never be as romantic as I would like it to be. And it could never be as romantic as the truth.
On the evening of July 22, 2012, Michael Mitchell went to a mixer at Cobalt, a gay club in Washington, DC. The international AIDS conference was being held in town and Michael, a DC resident who had once served as director of an AIDS agency, decided on a whim to go check it out.
I had been shooting video all day for my conference coverage for TheBody.com, and thought the name of the mixer — Meet the Men of AIDS2012! – had an inviting ring to it.
During the reception Michael and I engaged in some mutual cruising from across the bar before Michael, God bless him, made his move. He walked up and introduced himself. Even with dance music thumping and a boisterous crowd surrounding us, he had an adorable humility about him that came through loud and clear.
So did the remnants of a southern twang, and we quickly established we were both southerners born in Alabama. We talked about his work implementing the Affordable Care Act and I was struck by how proud he was to help provide health insurance to millions of Americans.
“I’m a blogger, I write about HIV,” I said after a while.
“Oh, I know,” Michael answered, and he grinned. “I’ve been reading you for years.” He leaned in closer and flexed his dimples. “And you should get new pictures. You’re much better looking in person.”
I swallowed the line like a cold glass of sweet tea.
For the remaining nights of the conference, I sat at the foot of Michael’s bed and edited video footage into the wee hours while he slept. We toured the Global Village at the conference center and got our picture taken (above). We held hands, casually and almost immediately. When I left a few days later there were tears at the bus stop.
You would think that after many years writing about living joyfully with HIV that my own happiness would be a given. That’s hardly been the case. After several false starts and some complete misfires — primarily due to my own deficiencies — I had stopped believing I would ever get the whole relationship thing right. What are the odds of getting another chance, after so many wasted ones?
“I am not a very good boyfriend,” I told Michael in a frank conversation early on, the kind that is meant to drive the poor guy away before he is taken hostage. “I’ve either been terribly immature or in active drug addiction. I’ve never been faithful, or even very thoughtful.”
“That doesn’t mean you can’t be,” he replied, as if it were the simplest response in the world, as if none of my past faults had any bearing on the here and now. Suddenly it clicked, a switch in my head I had been grappling with my whole adult life, and Michael’s statement made perfect sense. Why couldn’t I just behave differently, and do it because I love Michael and to hurt him would crush me?
I am going to marry that man.
On June 6, a small group of friends and family will gather in the lush woods of Pennsylvania a few feet away from where I proposed on Christmas Eve (below). During our ceremony I will make promises that I have every intention, at long, long last, of keeping. Our vows will be emotional but a mere formality, because for three years we have adored one another without a single cruel word between us.
When I was growing up I could never find anything in the house; the right socks, my school assignment, my lunch money. I would call downstairs to mother and complain that I just couldn’t find it, whatever it was.
“You haven’t found it yet,” she would reply with the preternatural calm that had mercifully accompanied her through years of raising six children.
My search has continued, for those things misplaced or never claimed to begin with, and I have actually found a few of them. Feeling comfortable in my own skin. Self-esteem. Sobriety. An acceptance of life on its own terms. An unselfish love for another human being.
The search may have been maddening, but the guidance of a good mom usually holds true.
I just hadn’t found them yet.
Wednesday, April 15th, 2015
ACT UP has always intimidated me. In the 1980’s, while working at LA Shanti to provide emotional support to those dying of AIDS, I doubted my activist cred while watching the dramatic, inspiring actions of ACT UP. Everyone has a role to play, of course, but I so admired the courage and laser-focused anger of ACT UP, as evidenced in the Oscar-nominated documentary How to Survive a Plague.
So it was with excitement, yes, but also a great deal of trepidation that I accepted an invitation to speak at ACT UP NYC’s first town hall forum on AIDS long term survivors last November. I certainly qualified, having tested in 1985. But what could I possibly offer a room filled with activists who had literally defined the word empowerment and had stomped their way across New York City during the most ravaging days of AIDS and beyond?
The forum was held at the NYC LGBT Community Center, in the very room where Larry Kramer had founded ACT UP decades earlier. I bought an ACT UP button at a side table, with tears in my eyes. The sense of history was palpable.
Any doubts about the relevance of addressing long term survivors were answered by a packed room. The program included presentations by Graham Harriman, Director of the HIV/AIDS Bureau, Mark Brennan-Ing of the ACRIA Center on HIV & Aging, and popular local gay therapist Scott A. Kramer.
When it came my time to speak, to offer my personal perspective on a lifetime with HIV, I abandoned my note cards and the story came pouring out of me. My voice quivered the entire time. I cried and told my secrets and my shame and my grief in ways I have never revealed on my blog.
The room responded with warmth and acceptance. Afterwards, iconic ACT UP members whose names I recognized greeted me and thanked me (like Ed Barron, at left). It was one of the most nerve-wracking and proudest days of my life.
OUT FM featured my remarks recently on their weekly radio show on WBAI/NY, and it is through their courtesy that I am able to share this recording of my presentation. It includes a little adult language here and there (sorry, Mom!).
Our most effective tool as people living with HIV, and as long term survivors in particular, is simply telling our story. There is such power in the personal.
My deepest gratitude goes to ACT UP NYC for everything, both then and now. Thanks for listening, and please be well.
Saturday, March 28th, 2015
Why Andy Cohen isn’t badgering me with phone calls to bring this series to Bravo, I’ll never know. At any rate, you will find all three videos of the series below.
During the first year of producing my blog videos back in early 2009, it occurred to me how much of my health and happiness was the result of having a solid support network. I wanted to find a way of showing this through my blog, and the result would be three video episodes that remain among my favorites produced for My Fabulous Disease.
What might it be like, I wondered, if I invited some friends living with HIV over to my place and the video chronicled our evening together? Was there value in showing our support and friendship? My cinema verite experiment could be inspiring — or a complete bore.
I needn’t have worried. When Craig, Eric, James and Antron arrived for dinner, they plunged into the evening with startling honesty and affection for one another. While my BFF Charles worked the camera (the man is a saint; he didn’t eat at the table with us so it wouldn’t intrude on the filming), the five of us let down our guards and shared on a variety of topics.
We talked about our mothers, and how and when we disclosed to family and friends. We talked about dating, and loneliness, and what we tell people who have just tested positive.
Viewers loved doe-eyed Antron, the 23 year old with the heartbreaking story of his mother’s reaction to learning his status. They left comments about the tattooed, sexy James, and his candid stories of sex and disclosure. They swooned over the philosophical Craig, and his moving description of his mother’s face the moment he revealed his status, and equally, how Eric created his “HIV Team” of physicians and family to combat his disease.
As for me, I look back at this episode and wish my video editing skills were as honed as they are now, and I regret filming when my face was swollen from my initial facial filler treatment (I look like I’m welcoming you to Munchkin land). But I couldn’t have been more thrilled with the response to the video and knew that I would have to produce another episode with this amazing group.
That would happen a year later, when “The Real Poz Guys of Atlanta” was posted on TheBody.com on February 23, 2010. This time we skipped dinner and went directly to dessert, as I taught my friends how to bake my legendary brownies. Then we sat by the fire for a conversation even more intense than our last, sharing about partners lost to AIDS, our sex lives and what constituted “acting out,” and even a round of show and tell, as each of us brought something of meaning to our lives with HIV.
When another year later we met up again, sparks flew. These guys were really getting the hang of this, because we discussed and revealed things like never before. From crystal meth addiction to our mothers, nothing was off limits. There’s even a (NSFW-ish) chat about tops and bottoms, modern gay sexual politics, and which one of us absolutely loves using the female condom. I love hearing my friends talk dirty for a good reason. And about reaching out for help when you really need it.
And having these conversations is really what this project was about for me. The healing grace of our friends, and how that support comes in handy during trying times.
Do you have a strong circle of friends who know your status or otherwise have your back? I’d love to hear some of your experiences and what you might advise someone who is considering whether or not to disclose their status to their social circle.
In the meantime, my dear friends, please be well.
Friday, March 20th, 2015
It wasn’t easy keeping my composure when I interviewed for my first job for an AIDS agency in 1987. Sitting across from me was Daniel P. Warner, the founder of the first AIDS organization in Los Angeles, LA Shanti. Daniel was achingly beautiful. He had brown eyes as big as serving platters and muscles that fought the confines of the safe sex t-shirt he was wearing.
At 26 years old, with my red hair and freckles that had not yet faded, I wasn’t used to having conversations with the kind of gorgeous man you might spy across a gay bar and wonder plaintively what it might be like to have him as a friend. But Daniel, one of legions of people who had abandoned whatever career they had planned and went to work building support programs for the sick and dying, did his best to put me at ease. He hired me as his assistant on the spot, and then spent the next few years teaching me the true meaning of community service.
My new mentor and friend quite literally embodied Shanti’s mission to provide a non-judgmental, compassionate presence to our clients, many of whom were in the final stages of life.
Daniel was also our secret weapon when it came to fund raising. Whether shirtless in a dunking booth, dressed in full leather regalia, or spruced up to meet a major donor, it was tough to resist his charms. He knew his gifts, organizationally and otherwise, and offered them liberally for the benefit of our fledgling agency.
As time went on, Shanti grew enormously but Daniel’s health faltered. He eventually made the decision to move to San Francisco to retire, but we all knew what that really meant. I was resigned to never see him again.
In 1993, Shanti hosted our biggest, most star-studded fundraiser we had ever produced. It was a tribute to the recently departed entertainer Peter Allen, lost to AIDS, and the magnitude of celebrities who came to perform or pay their respects was like nothing I have ever seen. By that time I had become our director of public relations, and it was my job to corral the stars into the media room for interviews.
Celebrities like Lily Tomlin, Barry Manilow, Lypsinka, Ann-Margret, Bruce Vilanch, and AIDS icon Michael Callen were making their way through the gauntlet of cameras in the crowded media room. I had tried to no avail to convince our headliner Bette Midler to make herself available to the expectant press, but as I stood in her dressing room pleading my case, she firmly declined, explaining that she had an early morning call for the filming of the television remake of Gypsy. I had tried to insist until she waved me away and started removing her panty hose right in front of me. I nearly tripped through the doorway during my frantic retreat.
Back up in the media room, one of my volunteers approached me with a look of shock and excitement on his face. He pulled me from the doorway. “I didn’t know he was going to be here,” he said with wide eyes. “I mean –“
“Who?” I asked. On my God. Tom Hanks? Richard Gere?
“He’s with Miss America, Mark,” he said. “They’re right behind me.” We both turned as the couple rounded the corner of the hallway. They entered the light of the media room and I barely kept a gasp from escaping.
Beautiful Leanza Cornett, who had been crowned Miss America, in part, by being the first winner to have HIV prevention as her platform, had a very small man at her side. His head bore the inflated effects of chemotherapy, which had apparently done little to stem the lesions that were horribly visible across his face, his neck, his hands. His eyes were swollen nearly shut. In defiance of all this, his lips were parted in a pearly, shining smile that matched the one worn by his gorgeous escort.
I stepped into the media room, wanting to collect myself, to wipe the look of pity off my face. I swallowed hard and stepped into the doorway to announce them to the press.
The couple walked into the bright light and several flashes went off at once. And then the condition of Miss America’s companion dawned on the camera crews. A few flashes continued, slowly, like a strobe light, and across the room a few of the photographers lifted their eyes from their equipment to be sure their lenses had not deceived them.
Daniel looked to me with a graceful smile, and it became a full, sunny grin as he looked to the beauty queen beside him and put his arm around her. She pulled him closer to her. Their faces sparkled and beamed – glorious, joyful, defiant – in the blazing light of the room.
That man, I thought to myself, that brave, incredible man is the biggest star I have ever seen.
And then the pace of the flashes began to grow as the photographers realized they were witnessing something profound. The couple walked the path through the room and toward the other door. “Just one more, Mr. Warner?” one suddenly called out. “Miss America! Just another?” The room became a cacophony of fluttering lenses and calls to look this way and that, all of it powered by two incandescent smiles.
Daniel and Leanza held tight to each other, their delight lifted another notch as they basked in their final call. Every moment of grace, every example of bravery and resilience I have known from people living with HIV, can be summed up in that glorious instant of joy and empowerment.
“Boss!” I said to him as they exited the room. “I didn’t know you would be here. It’s just… so great.”
He winked at me. “I’ll be around,” he said. “I brought my whole family with me tonight. I need to get to the party and show off my new girlfriend!” The three of us laughed, and then I watched Daniel and Miss America, arm in arm, disappear down the hall and into the reception.
Only months later, I was at my desk in Atlanta in my new position as director of a coalition of people living with HIV when I received a phone call.
“Mark, this is Daniel,” said a weakened voice. “Monday is my birthday, and I thought that might be a good day to leave.” Daniel had always been fiercely supportive of the right of the terminally ill to die with dignity and on their own terms. We shared some of our favorite memories of our days at Shanti and I was able to thank him for his faith in me and setting into motion a lifetime of work devoted to those of us living with HIV.
Daniel P. Warner, as promised, died on his birthday on Monday, June 14, 1993. He was 38 years old.
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.
Tuesday, February 3rd, 2015
The lobby of the Melbourne convention center at the international AIDS conference last July was packed with scientists, community educators, and activists. I was busy wrangling interviews for my daily video blogs.
Across the room I spotted JoAnne Keatley and Laxmi Narayan Tripathi, two of the most visible transgender women in the world and experts on transgender issues. I scurried up to them for a sound bite on their thoughts about the conference.
“This has been quite a year for trans people,” I began, as an ill-conceived question began forming in my tiny brain, “what with the visibility of trans people like actress Laverne Cox. That must help a lot, huh?”
The women stared at me as if I were mad.
“Our visibility is due to grass-roots organizations doing the hard work of education and advocacy,” JoAnne responded with a gracious but cool reserve. She went on to explain that transgender people face enormous challenges just to make ends meet financially. “We are victims of discrimination and violence on a daily basis,” she said. “Too many of us, in order to survive, have to engage in sex work. The number one intervention for the trans population is to make it safe for us to participate in the workplace.”
I felt like an idiot, but my insensitivity knew no bounds and I wasn’t done yet. The activists were accompanied by a third woman who was quite lovely but declined contributing to the interview. As I thanked JoAnne and Laxmi for their time, I turned to their companion and good-naturedly said, “ah, the quiet, pretty one.”
Because the real litmus test for a successful trans person is whether or not they are attractive.
The women were already walking away, presumably to find someone who could avoid insulting them, when JoAnne glanced back to pointedly call out, “we are all pretty!”
I like to consider myself an enlightened gay man. A career in HIV advocacy has taught me a lot about sexuality, racism, and women’s issues. But I’ll be damned if I have managed to learn very much about the T in LGBT, despite the issue bubbling up throughout popular culture. My sensitivity level is long overdue for some transitioning of its own.
Transgender people throughout the world may not know who Bruce Jenner is either, but it appears the former Olympian is about to grant many of us another such teachable moment. The gold medal winner and famously reluctant participant on the Keeping Up with the Kardashians reality show is the subject of numerous media reports that (s)he is transitioning – I don’t even know at what point it is customary for the pronoun to change – and there will be a special series on the E! Network devoted to it, including visits to physicians and mental health professionals.
If handled with sensitivity – admittedly, a tall order for the network that brought us the Kardashian clan – Bruce’s story has the potential to provide an educational lesson not unlike Magic Johnson’s coming out as HIV positive in 1991: an American sports hero, someone many of us think we know, revealing a private part of themselves to a public woefully ignorant on the topic. Oprah must be chomping at the bit.
Easy does it. While it may be true that Bruce is ready to share his story, transgender people face enormous physical and mental challenges even after their transition, including continued risk of suicide, and their stories are singular and vary widely. Let’s hope Bruce has supportive counsel and is braced for the media barrage.
All this in a year that has seen the Amazon series Transparent win awards and the President say the word “transgender” for the first time in a State of the Union speech, and not long after Chaz Bono shook his groove thing on Dancing with the Stars.
I have sincere enthusiasm for these developments yet still find myself judging those who would be advocates, placing the likes of Laverne Cox, imbued with a winning I’m-just-happy-to-be-here spirit, in stark contrast to the more confrontational author and activist Janet Mock, who beneath her high wattage smile looks like she is inches away from slapping the stupid out of somebody.
God forbid transgender people make us uncomfortable. You know, like liberated women once did, and gay rights protesters and marchers in Selma and AIDS activists.
How difficult it must be for an entire segment of humanity to contend with score keeping like mine, to be judged by whomever spoke up last, to be seen as a monolithic “community” without nuance, to have to continually respond to dangerous ignorance without losing it completely.
My curiosity about all things trans was largely satisfied recently by reading Queerly Beloved: A Love Story Across Genders by married couple Diane and Jacob Anderson-Minshall. It is a remarkable tale about their former lives as a lesbian couple and what happened when they were faced with the realization that one of them, Suzy, is a transgender man who would eventually take the name Jacob.
There are revelations on every page of Queerly Beloved about issues I have wondered about and even more that have never occurred to me. Diane and Jacob chronicle every step of the transition and never make the reader feel like an inappropriate voyeur.
And trust me, the journey is a labyrinth of sexual and gender identity, as questions about being lesbian or straight, male or female, are raised in increasingly complicated permutations. These questions are all the more urgent to Diane and Jacob, given their careers as feminists working in the lesbian publishing arena.
Jacob is bracingly candid about his initial doubts about his transgender status and the couple’s misgivings about losing their identity in the lesbian community. However freeing his masculine transformation may have been, he does not shy away from the reservations that accompanied it and the ramifications he faced afterward.
Jacob includes fascinating insight into the riddle of nature vs. nurture, including the numbing of emotions he experienced when testosterone treatment began and how, in his new identity as male, he found himself in the foreign, privileged fellowship of men — and realized he was suddenly deferred to by women. Ultimately, Jacob challenges us to think again and again about what it means to be male.
For her part, Diane achingly shares her confusion and heartbreak over losing the woman of her dreams to his transition and hormone therapy, and writes of her lover’s femininity slipping away in ways subtle and profound: his unwillingness to talk through feelings as he once did, the light touch of his hands being replaced by a thicker skin, literally, and a numbing of emotions that robs him of his highs and lows.
In a particularly telling scene, they both attend a book reading where a gay man who came out late in life describes the impact on his former wife. The sad and rueful glance that Diane gives Jacob during the reading makes you realize that, whatever the nature of the coming out process, there are often unintended casualties in its wake.
Diane and Jacob reveal in intimate detail what we may have long suspected. Masculine and feminine are a continuum, intersecting both our gender and sexuality, and the enormous world we inhabit contains gradations of it all.
Yet, as the book’s title makes clear, this is a love story. And despite confused presumptions from family and friends about the nature of their relationship and even their sex life, the couple continue to find joy and satisfaction in the arms of the same person they have adored from the very beginning.
Although they go to great lengths to patiently answer questions in their inspiring memoir, the love Diane and Jacob have for one another is the final, simple answer.
Let that be a lesson to us all.
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
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