Posts Tagged ‘aids’
Thursday, July 7th, 2016
In a cramped meeting room in New York City on May 27, 2016, a dozen gay men, HIV positive and negative alike, came together to answer a vexing question: How do gay men bridge a divide that has been forged through decades of HIV stigma, distrust, and mutual blame? Or, at the very least, what might be done to start a conversation about the divide and begin to heal the wounds?
Convened by Avram Finkelstein, the HIV-negative artist and HIV activist who was part of the collective that created the iconic SILENCE=DEATH artwork in the 1980s, and Mark S. King, the HIV-positive blogger and advocate, the Viral Divide Flash Collective sought to begin a difficult conversation and find a graphic way to present it. The collective was sponsored by Visual AIDS and made possible through funding from Broadway Cares/Equity Fights AIDS and GMHC.
A “flash collective” is an exercise in artistic advocacy involving group facilitation and the common pursuit of a graphic message to communicate a concept for the public sphere. In other words, the gathering of gay men had mere hours to discuss the HIV viral divide, vent their frustrations about their lives and each other, and then find common ground. It was, in a word, intense.
Before the group even finished consuming their breakfast bagels, the walls of the room were covered in reams of butcher paper scrawled with the frustrations and issues viewed as crucial to members of the collective.
Important topics were raised, such as race, privilege, and the science driving the new HIV landscape. Again and again, the group talked through these concerns and then returned to their primary purpose of crafting a message about the viral divide among gay men.
“This message is the first sentence in a conversation,” Avram Finkelstein reminded the collective throughout the day. “It does not have to tell the entire story. It is meant as the starting point for important conversations.”
The result, HIV ÷, features the tagline, “The virus divides. It doesn’t have to. No walls between gay men.” The graphic image includes an animation that outlines the various ways in which the divide affects gay men: age, joy, relationships, sex, race, and love.
And the graphic image has an impressive coming out party on the way. It will be projected onto the façade of the Bronx Museum on July 13, 2016, as part of the opening of ART AIDS AMERICA, a retrospective of AIDS-related art through the years. The Illuminators, most widely known for their work projecting graphic messages on the New York City skyscape on behalf of Occupy Wall Street, will coordinate the projection. The work of the Viral Divide Flash Collective is viewed by the museum as the very latest in a history of AIDS artwork that dates back more than thirty years.
The Viral Divide Flash Collective has set up a Tumblr page featuring the final artwork and of the collective’s day together. Photos of the projection onto the Bronx Museum will be added after the event on July 13. Anyone is welcome to post their thoughts on the Tumblr page or to share the images on social media.
The HIV ÷ message comes just as gay men are grappling with a host of new scientific realities that are altering the social landscape.
The increased adoption of pre-exposure prophylaxis (PrEP) has re-energized activists and provided a way for HIV negative gay men to participate fully in their own HIV prevention.
Meanwhile, research has definitively shown that people living with HIV who are on treatment and maintain an undetectable viral load are uninfectious. A new group, Prevention Access Campaign, is aggressively promoting the scientific evidence that undetectable people living with HIV cannot pass on the virus.
Online dating apps, where divisions between HIV positive and negative gay men have been most prominently on display, have now incorporated profile choices that include being on PrEP or being HIV positive and undetectable. So there is movement afoot, even as HIV stigma remains a stubborn roadblock to bridging the viral divide.
It would appear that now, more than ever, gay men can relieve themselves of the social walls that have divided them along the lines of their sero status. The HIV ÷ graphic message is only a small part of multiple efforts to repair relationships among two factions of gay men that have often been at odds with one another.
After so many years of mortal fear, irrational and otherwise, bridging the viral divide will surely be easier said than done. The members of the Viral Divide Flash Collective have started an important conversation. It will be up to countless others to continue it.
I could not be more excited about returning to the international AIDS conference next week. AIDS2016 in Durban, South Africa, is sure to offer exactly the kinds of sights, sounds, and people that I love capturing in my video blog coverage. I am proud to have the sponsorship of MSMGF, the global organization working for the health and rights of gay men (men who have sex with men) around the world. Beginning with pre-conferences that begin on July 16, you will be able to follow my coverage on the MSMGF site or by checking in with TheBody.com, the most comprehensive HIV site anywhere. As with my past conference coverage, I leave the research and panels to others, while my trusty camera man Theodore and I train our sights on the colorful people who make this conference like none other. See my teaser video here, and wish me luck!
Tags: advocacy, aids, criminalization, culture, gay, gratitude, help others, hiv, politics, PrEP, Recreation, serosorting, Sexuality, stigma, testing
Posted in Gay Life, Living with HIV/AIDS, My Fabulous Disease, News, Prevention and Policy | No Comments »
Monday, June 6th, 2016
My friend Olivia G. Ford (she got that whole middle initial thing from me, I’m convinced of it) speaks even faster than I do. That’s a rare distinction.
Olivia is also an editor. She was my editor during her years at TheBody.com. I am afraid of editors. They know too much. They might even know I’m not the writer people think I am. Not on the first draft, anyway.
A few months ago, Olivia invited me to join her as the guest editors of a special issue of Positively Aware magazine and the result, “Our Golden Years,” explores aging and HIV from the viewpoint of people who are already post-retirement age. (Check out the link to read a digital version, or find a copy at your local HIV clinic or pharmacy.)
In our initial conversations about how to approach the topic of HIV and aging – and let’s face it, we’ve all been seeing it in HIV media a lot in recent years – we hit upon the fact that, while there are so many people post-retirement age who are living with HIV, most stories on HIV and aging tend to focus on “the AIDS generation” preparing to age, rather than those who are already experiencing their advanced years right now.
From our editor’s letter in the issue:
We believe that the story of aging and HIV must include people who were in their 30s and beyond when the epidemic began, as well as the newly diagnosed who are already over 50 (who now account for roughly 1 in 6 new HIV cases). Those who have surpassed retirement age have been largely absent from the conversation and media coverage of HIV/AIDS.
The more we considered this, the more we became committed to sharing the stories and lived experience of elder people with HIV for this issue, “Our Golden Years.”
The idea of featuring the lived experience of older people with HIV got us excited, and led to some terrific pieces on mental health (written by two therapists and longtime survivors), a conversation between generations of black gay men, women with HIV post-menopause, how to address the needs of transgender women as they age, and a frank and revealing piece on sex and dating in later years.
We were really fortunate to have such talented HIV writers and advocates join us for this issue, including David Duran, Kenyon Farrow, Sharon Lee, Rae Lewis-Thornton, Kellee Terrell, David Alain Wohl, and David Fawcett. The issue was overseen by the dynamic duo from Positively Aware, editor Jeff Berry and creative director Rick Guasco.
More from our editor’s letter:
So many cultures throughout human civilization have bestowed great honor and value upon their most senior members. We believe it is inherent upon us all, as people who care deeply about a health crisis that impacts us socially as much as medically, to do the same.
Welcome to our golden years.
Being a part of this collaboration with Olivia was truly a delight, and while it may have demystified the role of an editor for me – I’ve never done this before – it absolutely increased my respect for Olivia and her talents, and for all those people out there who are conceiving and shaping HIV publications and web sites on a monthly basis.
So, while I’m at it, a shout-out to the late, great Bonnie Goldman, the founding editor of TheBody.com, where My Fabulous Disease was born. And to JD Davids, the scary smart editor there now. And then there is the sly and brilliant Oriol Gutierrez at POZ Magazine (with the amazing Jennifer Morton, their very own wonder woman), the lovely Bob Leahy at PositiveLite in Canada, and the nurturing and insightful talents of Diane Anderson-Minshall at PLUS Magazine. And Chris Bull at Queerty has been a real advocate for informative and challenging HIV content on their site. Editors, editors everywhere!
But don’t get me wrong. I’m still afraid of them.
p.s. Check out the digital issue of Positively Aware, look for it at your local clinic or pharmacy, or get your own subscription to the print edition right here.
Sunday, June 5th, 2016
The young woman sitting across from me on the bus is in her mid-20s. She turns to her companion and her voice grows serious.
“I know someone who died,” she says in the hushed tone reserved for tales of mortality. Her friend looks up from his phone. “He was a good friend of my brother,” she goes on. “He was killed in a motorcycle accident a few months ago. It was just awful.” As her friend offers words of comfort, my own thoughts produce a rueful smile and a nagging question.
Just one? You know just one person who died?
By the time I was her age, death in my social circle was so commonplace the body count approached the toll of a commercial airline tragedy.
I listen as the woman reverently shares the details of the accident, of the shock waves that surged through the family, of what the dead friend was like and who freaked out at his funeral. And then a bittersweet realization strikes me.
The friend she lost has a story of his very own. It is the chronicle of one tragic death, with all of its intimate details and reverberations. His story will be repeated by the young woman for years, and by her brother and by the remaining loved ones of the absent friend. And they will grieve and remember this individual death and grant it the weight of a rare tragedy.
Already I have indulged in a regrettable pastime that aggravates me when others pander to it. I am counting my lost friends like selfishly guarded chips in a morbid poker game, claiming my grief as if the high tally amplifies the legitimacy of my loss. There is no hierarchy of misery. The death of one person close to you is quite enough.
And yet there are harrowing, undeniable moments from my past, drawn from 30 years living with HIV, that have shaped my attitudes and the senseless tragedies that befall us. I can conjure them but I must do it deliberately, for they are held captive in secluded corners of my mind and I release them with great caution. Perhaps now is the right time to unlock a few of those images.
The fluids in Lesley’s dying body percolating like a coffee maker as we stood at his bedside awaiting his last breath. The anguished admission by my brother, Richard, that he helped his critically ill lover swallow a deadly, Seconal-laced cocktail in order for him to die on his own terms and avoid the final indignities of AIDS. My visit to Pablo in intensive care during his pitiful throes of dementia, nodding my head reassuringly as I tried to decipher his final, incoherent pleas.
They are a litany of despair, these heartrending tales, but I feel compelled to reveal them as part of another common exercise: to authenticate my history as a “long-term survivor.” I have misgivings about that unsettling designation because it doesn’t speak to my other, parallel life experiences and it suggests a dismissal of my relevance in the here and now.
That life has included falling in love, changing careers, teasing my friends, watching my cats wrestle one another, and looking forward to whatever lies ahead with a deep sense of gratitude and joyful anticipation.
And it is this prism—one that includes AIDS as only a segment of my life—through which I view the world today. My status as a long-term HIV survivor does not make me a champion or a museum piece to be examined and admired. I am a man in the prime of his life. My age and maturity guide me, not the virus that has failed miserably to kill me.
The grief-stricken young man I once was held no clue about the mystifying speed with which time passes. The swift interval between the early days of AIDS and merciful treatment breakthroughs confounds me even now. Suddenly I blinked, and when I opened my eyes I was 40 years old and the world was a far different place.
My work in HIV advocacy continued during this time while others retreated to lives away from daily reminders of the epidemic. I did not fault them for that, in fact I envied them, but the army of our earliest activists, forged in the first years of the plague, had diminished.
By then, women and people of color had gained more traction and acknowledgment in the HIV arena, though without the national fervor or the generous support enjoyed by the original, largely gay agencies.
It was a time of such hope and encouraging progress, but if you scratched the surface of these victories you found they were dependent on privilege, money and access. Deaths continued unabated behind a dark curtain of racism and poverty.
The gay community began to avert its eyes from the continued infections of people unlike ourselves, and I joined many other exhausted activists who abandoned town hall forums devoted to HIV for the celebratory relief of the dance floor. Massive circuit party events became a vibrant diversion, summoning revelers by promoting their dubious contributions to AIDS service organizations. After a generation of relentless mortality I felt entitled to the party, to the steroids and the gym membership and the body-thumping beats of house music.
That is, until the festivities morphed into drug-fueled bacchanalias that required ambulances with the same regularity that had once been needed at AIDS hospices. I fell victim to their excesses, and my drug addiction and recovery process removed me from HIV advocacy for the next several years.
They comfort me, these tangible reminders of strife, victory, love and loss. They help me embrace and appreciate my life history. Perhaps I don’t find the title of “long-term survivor” so unsettling after all. There are worse things.
Most of all, the trauma that had once consumed me is now shrouded in the fog of a fading dream.
What remains are the wondrous developments of the present, like treatments that have also rendered people with HIV non-infectious and the amazing potential of pre-exposure prophylaxis (PrEP), a pill to prevent someone from contracting the virus. The advent of PrEP is the most significant prevention advancement in a generation. It is just the kind of miracle we once prayed for as we sat silently in pews at memorial services.
But astoundingly, these developments have been nearly as controversial as they have been celebrated.
There are thoughtful conversations about the cultural and medical effects of PrEP. What a shame they are being drowned out by clanging arguments about who is using condoms and who is not. The ludicrous chatter about who is a whore, a role model or a rebel foolishly reduces human sexual behavior to a problem that must be solved. Much of it seeks to impose sexual sterility in the way homophobic conservatives once denounced all gay bedroom antics, whether they were risky or not.
I remember what sex was like before gay men started using condoms. It was glorious. It still is. I always thought that finding our way back to enjoying sex without a barrier was kind of the point. Even the popular slang for sex without condoms, “barebacking,” evokes some kind of deviant sexual pathology. The entire history of human sexuality would suggest otherwise.
I watch the absurd finger-pointing today, the naïve segregation of positive and negative, the lack of empathy granted to human failings, the tendency of the newly infected to call the police before they call a doctor, the fracturing of the advocacy efforts built over decades, and I weep for the community we once were.
Trying to imprint our life lessons on the young is a fool’s errand practiced without effect for millennia. I have never walked up to anyone who served in Vietnam and asked him to sit down and tell me all about it. I may respect the elderly soldiers in Veterans Day parades, but whatever post-traumatic disorders or multiple losses we may share fail to unite us. I watch them roll by in wheelchairs, festooned with medals and shriveled into nothingness, and then I have the audacity to wonder why younger gay men don’t consider my life experiences relevant.
Our influence as long-term survivors may be limited, but we can find meaning and engagement as cultural elders and mentors. To whatever degree younger people are receptive, we have so much to offer about the nuances of treatment, the various side effects and the failings of the pharmaceutical complex that we have rallied against so effectively through the years.
Regardless, nothing should deter us from being of service to one another. We must support the emerging networks of other survivors and work to find solace in our shared history. We are a displaced segment of a community that once ministered to us. Our bond is vital to finding solutions to the issues we face as an aging population.
As wearying as our battles have been, as unwelcome as we may sometimes feel in the modern advocacy movement, we have plenty to contribute. We had better do it while we still can.
I am sensitive to the passage of time because I have seen lives with great promise left unfulfilled. I may no longer fear dying, but I am sorely afraid of not taking full advantage of these precious additional years that were once unimaginable. Regrets, the things unsaid and undone, are what frighten me and urge me onward.
The mysteries of life and time will be revealed in due course: to the woman on the bus grieving her singular loss, to those who would howl at the moon over behaviors they do not understand, to survivors grappling with the meaning of tragedy, to young people negotiating the sexual terrain, to you and to me and to all the rest.
Enlightenment awaits. All we have to do is blink.
(This essay appeared in the June, 2015 issue of POZ Magazine and is shared with their permission. Today is HIV Long-Term Survivor Awareness Day.)
Tags: advocacy, Aging, aids, barebacking, criminalization, culture, family, gay, gratitude, help others, hiv, lipo, meth, physical, physician, politics, PrEP, recovery, Recreation, research, serosorting, Sexuality, stigma, testing
Posted in Family and Friends, Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease, News, Prevention and Policy | No Comments »
Thursday, June 2nd, 2016
The issues of race, gender and privilege crackled through the recent HIV Is Not A Crime (II) conference like a live wire, throwing sparks at every turn. From the main stage to the hallways, attendees called out white classism, the utter failure of the criminal justice system (unless its purpose is solely to imprison black men), and what it truly means to be an ally of marginalized communities.
It was at turns exhilarating and a little unnerving. White male advocates like myself might have lost our bearings from time to time, wondering why we felt self-conscious at a conference devoted to an issue we care deeply about. No matter. The anti-criminalization movement is largely populated by women and people of color, and their job isn’t to make me comfortable (activism rarely is). Changing laws that imprison innocent people living with HIV is the goal, along with condemning the social and legal systems responsible.
If you go with that thesis, then the prominence of women and people of color at HIV Is Not A Crime is as bittersweet as it is triumphant.
Produced by The Sero Project and the activism powerhouse Positive Women’s Network USA, the conference served as a “training academy” for advocates working to reform or repeal State-wide HIV criminalization statutes, and the work of organizers is a testament to our common bond: the empowerment of people living with HIV, speaking about ourselves, for ourselves.
The intersections of race, gender, and sexuality were given as much weight as strategy sessions on working with legislators and lawyers, and the program repeatedly drove home the fact that criminalizing behaviors related to specific groups of people is as American as apple pie. Plenary speakers included advocates for women (including transgender women), current and former sex workers, immigration reform and drug legalization advocates, and, most powerfully, people who have been prosecuted under HIV criminalization statutes.
My video coverage of the HIV Is Not A Crime (II) Training Academy provides a glimpse of demographic landscape the conference offered, even if I managed to chronicle remarks by elevated HIV advocate Mary Fisher while not capturing enough of the electrifying words of grassroots activists like Maxx Boykin, Ashton P. Woods, and Marco Castro-Bojorquez, or criminalization survivors like Ken Pinkela and Monique Moree (add them to your Twitter feed anyway). My special thanks to Nicholas Feustel, a Berlin filmmaker who is creating his own film about the conference, for allowing me to tag along during his interviews (and take advantage of his awesome lighting).
It is tough to describe the experience of being on the campus of University of Alabama in Huntsville with these fierce advocates for four days, living together in dorms and taking our meals in the cafeteria. HIV Is Not A Crime may be the most perk-free conference any of us have ever experienced, with no exhibit hall or pharmaceutical sponsors bearing swag bags, and I don’t believe we would have it any other way.
For more information on HIV criminalization, and why this continues to be the defining moral HIV issue of our time, I urge you to visit The Sero Project for video interviews with those who have been prosecuted and a state-by-state map of HIV statutes.
Meanwhile, my friends, please be well.
p.s. Speaking of conference coverage, I’m thrilled to announce that I will return to the International AIDS Conference for AIDS2016 in Durban, South Africa in July. My video blog coverage is sponsored by MSMGF and will appear on their site as well as TheBody.com. I look forward to bringing you the sights, sounds, breaking news, and most especially the people that make the bi-annual conference so memorable. Look for more details very soon.
Tags: advocacy, aids, barebacking, conferences, criminalization, gay, hiv, physical, politics, PrEP, serosorting, Sexuality, stigma, testing
Posted in Living with HIV/AIDS, My Fabulous Disease, News, Prevention and Policy | 1 Comment »
Thursday, May 12th, 2016
Daniel Cardone’s essential but relentlessly grim documentary about longtime AIDS survivors, Desert Migration, is fascinated with the bodies of the gay men it profiles.
The film begins with lingering shots of each of the subjects as they begin their day. It follows them through their routine, some of them naked, as they prepare breakfast, shower, shave, meditate. Their faces peer directly at us — a few of them handsome, all of them weathered — in high definition close-up.
We are being asked to study them closely. Look at the skin, the camera is saying, the muscles, the sags, the piercings, the facial wasting, the extended stomachs, the disfigurement, the open wounds. Desert Migration does not want us to turn away from what the gay plague of 30 years ago has wrought in the here and now.
It’s an almost clinical look at the after-effects of a catastrophe, like the documentaries that examine Hiroshima survivors decades after the bomb.
Desert Migration documents the results of a specific pilgrimage that became popular among gay men who were dying of AIDS decades ago: relocating to Palm Springs from major cities in the west, Los Angeles in particular. Once there, their fates and often their fortunes were reversed with the arrival of new medications in the mid 1990s. They experienced the emotional whiplash of renewed health in a world they had settled on leaving, as well as the unexpected financial burden of an extended lifespan.
The film is a crucial addition to the AIDS artistic catalogue because gay community is only now beginning to process and devote resources, artistic and otherwise, to the long term effects of the early AIDS crisis and the walking wounded who survived. That said, director Cordone doesn’t make it easy for us.
There is an unyielding melancholy that permeates the film. The men profiled are almost uniformly isolated or at least wistful. The languid pace of the storytelling is underscored by Gil Talmi’s ethereal original music, a slow pulse of electronica, like a dry desert breeze.
The men all speak of searching for purpose in the desert after having resigned to die there. They come from various levels of money and privilege, including some who outlived their bank accounts, and they are not without the sociological trappings of gay men, meaning, a fixation on self image and the pursuit of sexual or romantic partners.
“In this town, being 60, I’m chicken,” says one. Several of them are battling the aging process mightily with trips to the gym and a regimen of steroids (“All the best looking guys have HIV,” one of the men advises), all while the Palm Springs gay clothing stores mock them with windows filled with slender mannequins, dressed in tiny and unforgiving speedos.
More than one of them debates whether or not they would have reached their current level of spirituality, of self love, if they had not come face to face with their own mortality so young. “I don’t know if my life would have such richness if I wasn’t positive,” one of them admits.
The real star of the film may be Austin Ahlborg’s sumptuous cinematography, which makes the most of the desert landscape, often contrasting the men’s flesh and blood with endless vistas of withered brush and rock.
Throughout the city of Palm Springs are hundreds of acres of modern, silently whirling windmills. The film focuses on them like a fetish, their propellers turning round and round, and the more Desert Migration returns to these monuments the more they appear to be clocks, ticking away, time always turning, slowing for no one. The image repeats itself, in shots of rotating ceiling fans and mechanical sculptures turning this way and that. Time is always moving, and it is unstoppable. Tick Tock.
There is so much in Desert Migration that will be familiar to gay men of a certain age, from the brutal to the romantic. Living life in five year increments, the sudden loss of friends, the confusion, the great love affairs cut short, the lives hijacked by drug addiction after having survived AIDS. There is comfort in identifying with these men, for those who need to, even if the film limits itself to their shared calamity.
After more than an hour of bleak pronouncements – and exactly one shot of someone laughing in the entire film – it becomes clear that filmmaker Cardone is almost exclusively fixated on the tragic aspects of these men’s stories.
It’s easy, maybe even lazy, to reduce AIDS survivors to their profound loss and a struggle for meaning in their later years (which, come to think of it, is a lifelong riddle everyone must contend with, after all).
Where is the joy? A brief dinner party suggests the good humor these men surely must incorporate into their lives, but otherwise filmmaker Cardone sticks to his theme of isolation and distress. “I just think that I’m very tired,” one of the men says, after unsuccessful attempts at connection and romance. “I just don’t know how much longer I even want to fight.”
“The optimistic ones survive,” one of the more privileged men offers, as night descends and he lowers the drapes of his condo, finely appointed with a leather sofa and a gleaming Judy Garland movie poster. Another subject begins the evening by welcoming a sex partner to warm up his sling. Optimism and escapism have their utilities.
Another man takes comfort in his own loneliness and solitude. “You’re a lot more free when you don’t believe much and you don’t have any hope,” he says, in an existential moment that might depress Sartre. “If you’re holding on to hope, then you’ve still got something in the way of enjoying what is.”
After all this, I wished to God that one of these guys was shown performing in musical theater or binge watching RuPaul’s Drag Race.
The film draws to a close in the darkness of the desert, as our day with these men ends. Throughout the mountain passes surrounding Palm Springs, out there in the dark, those windmills are surely still twirling.
They continue to spin, marking time, without regard for the riddles of life or the trials of gay men.
(Visit the Desert Migration site for information on film festival screenings in your area, or for news about the DVD release.)
Tags: Aging, aids, culture, gay, help others, hiv, lipo, recovery, Recreation, serosorting, Sexuality, stigma
Posted in Book Review, Gay Life, Living with HIV/AIDS, My Fabulous Disease, News | 2 Comments »
Tuesday, April 12th, 2016
Stigma is insidiously quiet. It is conjured in the mind, born of discomfort and fear, and then it is projected at “the other” among us. It judges them and isolates them. And it happens without a sound.
Stigma lets us take comfort in seeing things in others about which, we believe, they must be ashamed. It is a lazy way to feel better about ourselves—and therefore a popular human activity—and gay men are remarkably good at it. So many of us survive childhood taunts that by the time we come of age we have developed fairly lethal claws of our own. We know how to hurt others before they can hurt us.
But when the AIDS pandemic began over 30 years ago, gay men learned that whatever cleverness we possessed was no match for a crisis that questioned nothing less than our existence on this earth. Churches said we were damned. Politicians wanted us quarantined.
Gay men prefer to remember the earliest days of AIDS as a heroic time, and there is no doubt that many of us behaved that way, but stigma also was a fearsome, daily aspect of our lives in the early 1980s. Heterosexual parents were not the only people disowning someone with an AIDS diagnosis. Gay men also were driven by ignorance and fear. We kicked out our sick roommates. We refused to give them manicures or cut their hair. We turned away from their sunken faces at the neighborhood bar, when they had the guts to show up at all.
Once the initial hysteria subsided and the virus and its routes of transmission were identified, stigma between gay men calmed somewhat, if only because there was so much work to be done to care for the dying. Our brothers with AIDS were not so much stigmatized as pitied for their loss of dignity and humiliating deaths. They were tragic victims, exalted as martyrs.
Until they weren’t. With the advent of breakthrough treatment in 1996, the dying nearly stopped in its tracks. Patients got up from their deathbeds and rejoined the living. There were cheers all around. Within a few years, even the word “AIDS” had nearly disappeared from the gay lexicon.
Those former patients, and the many gay men with HIV to come after them, had no interest in playing tragedy, or in being wizened and terminal and predictable. They wanted to take their rightful places in our social scene, to date and fall in love, to enjoy the bars and the clubs and the house parties. They wanted to laugh and dance and live.
And that is when, in the deviously quiet way in which stigma operates, all hell broke loose. We built social fortresses to separate Us from Them. We didn’t have to bother labeling one another because the disease did it for us, creating an HIV hierarchy that started with “positive” and “negative.”
The more HIV treatments improved, the wider the viral divide became. Our mutual resentments and jealousies worsened. As the physical scars of AIDS faded—the skin lesions, the wasted faces—our anxiety level rose as HIV status became less apparent. You can just imagine the frustration of the discerning gay man, no longer capable of telling the positive from the negative. Where’s the comfort of stigmatizing someone when you can’t tell who they are?
Today, our attitudes about HIV and other gay men range from self-righteousness to outright contempt. From whatever our vantage point, we have shamed and stigmatized everyone else into a corner, and the result is a community in revolt against itself. We are a snake eating its tail.
It might be easy to doubt this gloomy view of the gay community. None of us like to believe ourselves guilty of treating “the other” badly. The only thing we admit for sure is that we have been mistreated and misunderstood. Our self-interest is telling.
Maybe the problem is that, beyond the convenient anonymity of online hookup sites or mobile apps, you don’t usually see HIV stigma in all of its black-and-white ugliness. You don’t hear its voice.
Gay men who get infected today are out of their minds. They are the failed ones, the grave disappointments, the apathetic, the careless, the irresponsible. They spit upon the memories of our courageous dead. They have no respect for our history, for our monumental tragedy.
We might make motions to comfort them, but it is the kind of patronizing back-patting that we reserve for the truly stupid. We tell them they will be fine, really, and we don’t look them in the eyes for very long. Our weary judgment shows.
Never mind that they are guilty of nothing more than being human, of being in love or getting drunk or trusting the wrong person or saying yes when they should have said no. Their weak excuses will be met with furrowed brows, and their dating life will wither. They will be marked and socially downgraded. They should be ashamed, and something inside us hopes that they are.
Do you hear it? Keep listening. There is so much more to say.
Before long, those newly diagnosed will join the promiscuous ranks of sexually active HIV-positive men. They are the unclean ones, the barebackers trolling the Internet, the murderers with tainted blood on their hands, the crystal meth addicts lounging in bathhouses with the door ajar. They are the unrepentant, the whores, the vile merchants of death.
Never mind that these men struggle to disclose their status, that they are routinely rejected socially and sexually, that their waning self-esteem is being strangled by our judgment, that sometimes their lives feel so forsaken they settle on whatever community will have them. The fact that stigma and depression often lead to escapist behavior is of no interest to us. We fear they could be having more sex than we are—hotter sex maybe—and the chance it might not be hurting anyone is infuriating. They should be ashamed, and we will make damn sure that they are.
The lowest rung of the gay HIV hierarchy is inhabited by older gay men who have lived with the virus for decades. They are the dependent ones, the sunken-faced humpbacks cashing their disability checks and wiling away their days sipping coffee in Café Disabilité. They are the aging invisibles and the sexually worthless.
They try to mask their feeble wasting with testosterone injections and protein shakes and facial fillers, but we know the truth. We see. They remind us of our darkest days, these unwelcome relics, and though we ignore them their haunting persists, in the daylight of the grocery store and the darkness of the bars. We avert our eyes and anticipate their extinction.
Never mind that they were among our earliest activists, our courageous long-term survivors, the men who scrawled words like “empowerment” and “advocacy” across the bureaucracies of their time. Forget that they have seen death in obscene quantity, that whatever joy they possess is a triumph of spirit. They should be ashamed, but we don’t regard them with enough interest to care.
Do the words sound familiar at all? Do you hear the voice? It isn’t nearly done.
Take a hard look at HIV-negative gay men. They are the superior ones, the corrupt morality police, the hypocrites, the gentlemen in waiting. Above all else they are the supremely lucky, because they can’t possibly live by the crushing code of conduct they impose on the rest of us.
They reject us as damaged goods. They promote how “drug and disease free” they are. They publicly advertise their outdated HIV results. They tell us we would make better friends than sex partners and then they don’t call again. They find clean, disease-free love with other, similarly superior men so they might have a life out of reach of the great unwashed.
Never mind that they have successfully avoided infection thus far, that they have buried friends and comforted lovers, that they withstand the unnerving ritual of HIV testing and worry about whether or not they will pass or fail. And please, pay no attention to the fact that they fear HIV stigma at least as much as positive men do, which is one compelling reason they hold tight to their negative status with such fervor.
None of their circumstances can excuse their indictment of the rest of us. We marvel at their lack of shame, and wonder bitterly if their attitudes might change if they became infected.
At least they don’t suffer the same wrath as do HIV-negative men taking Truvada, the HIV medication used as a pre-exposure prophylaxis, or PrEP. They are the traitorous ones, thumbing their noses at their elevated negative status by intentionally dipping themselves in the viral soup of casual sex. They are obviously barebacking infected guys or they wouldn’t be popping pills that blunt the consequences of being a poz-loving slut.
And God help those who don’t admit they are infected and have sex with a negative person, because they are the criminal ones, the terrorists, the dangerous liars who must pay dearly for what they’ve done. They belong in jail and off the streets, like drug dealers and rapists.
Never mind that, for reasons we all well know, they can’t always bring themselves to disclose, that they may use condoms, that they may be adherent to their meds and undetectable, and that no single case of an undetectable person transmitting the virus has ever been verified. Disregard the fact that conservative lawmakers and prosecutors are more than happy to exploit our thirst for vengeance and lock up some diseased fags who dare to have sex at all. Forget that during the first years of AIDS, when the virus reliably killed you, those who became infected took personal responsibility and called their doctors to start treatment and not the police to press charges.
That is the sound of stigma. It is bitter and rageful and terribly afraid. I can hear my own tones in it, like a voice in a chorus, when it says the words I would never admit to thinking. Do you hear your own?
Gay men have known since the AIDS pandemic began that empowerment is the antidote to stigma, that the more proactively we approach our health care and build support networks, the less stigmatized we feel. The answer lies in our refusal to be marked and shamed. But our own community challenges us at every turn.
Stigma operates exactly like the deadly virus we claim to oppose: It infects pieces of us and then turns those factions against the rest, until the entire body is weakened and vulnerable. We all know how that process ends.
That is what the gay community has become. We are AIDS itself.
When HIV disease is over—and some day it surely will be—our jubilation will be beyond all imagining. We will have finally put an end to the health crisis that has plagued us for generations, a crisis that polarized nearly everyone, most particularly us as gay men. And once the celebrations fade, another equally important moment will come.
We will take a look around at our friends and lovers on both sides of the viral divide—at all of our brothers whom we stigmatized for one reason or another—and our old judgments will be transformed to a deep regret. Hopefully, in that moment, a certain kind of grace will emerge. We will clearly see the deep, private wounds of HIV stigma, and we will finally allow that we are all simply and imperfectly human. And then everyone will have some explaining to do.
It wouldn’t be too soon for that moment to happen now.
(This article originally appeared as a cover story in the June, 2013 issue of POZ Magazine but has never been posted on my blog until now. It remains one of my proudest moments as a writer. You can view my remarks about writing this piece, presented at the 2013 International Conference on Stigma, here. Photos: Jonathan Timmes Photography.)
Tags: advocacy, Aging, aids, barebacking, culture, family, gay, gratitude, help others, hiv, physical, physician, politics, PrEP, recovery, Recreation, serosorting, Sexuality, testing
Posted in Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease, Prevention and Policy | 4 Comments »
Friday, April 8th, 2016
In a bizarre press release issued by AIDS Healthcare Foundation (AHF), the $1 billion dollar agency has offered “no interest loans” to assist Baton Rouge HIV non-profits who are suffering financially as a result of being sued by AHF. Yes, their circular logic is exactly that absurd.
AHF is like a wife beater who offers the victim a few bucks for makeup to cover the bruises.
The fantastically weird offer comes in response to a thundering public outcry after it was revealed that AHF, dissatisfied with their Ryan White Care Act funding in Baton Rouge, filed suit against the city and parish of Baton Rouge as well as the local non-profits agencies who also received funding – even though those agencies play no role in the disbursement of funding and are without resources to defend themselves.
AHF is “dismayed,” according to their release, that as a direct result of their lawsuit, the City of Baton Rouge chose not to execute funding contracts that would have gone into effect on March 1st, while waiting for an initial hearing to be scheduled. Services provided by local agencies since March 1st have gone without reimbursement, placing a financial strain on the agencies and risking service provision to people with HIV.
Kim Hood, Chief Operations and Compliance Officer at the HIV/AIDS Alliance for Region Two (HAART), one of the local agencies being sued, isn’t buying the loan offer for one second. “If AHF is in such a fantastic financial position to be so magnanimous as to offer loans to agencies that have been doing this work for more than 20 years,” she said, “then they don’t need Ryan White funding.”
“They have no intention of making any loans,” Hood continues. “I fail to see the purpose. If they loan me the entire amount I am supposed to get from Ryan White, how am I supposed to pay it back if they are successful in their lawsuit, which would take away funding from us?” Hood says that, rather than devoting time to managing care for HAART clients, “I have been spending my day drafting a response to a temporary restraining order filed by AHF. Their claims are laughable.”
Reached by phone for comment, AHF Director of Communications Ged Kenslea was not able to provide further information on the proposed loans, saying only that “we are in that process now.” When asked why, if AHF was concerned about the financial hardship of the local non-profits, they didn’t simply remove those agencies from their legal proceedings, Kenslea said it was a “legal question” and referred it to AHF’s legal counsel, who was unavailable for comment.
“We are attempting to hold the parish accountable for an inequitable process,” Kenslea managed to say before abruptly ending the call.
Hood vehemently disagrees with that assessment, or that the parish “abused its authority when awarding contracts,” as claimed by the AHF press release.
“We don’t always agree with the monies allocated,” Hood said. “But we trust the entities who are charged with making these decisions, because they have the most information about where the need is. We don’t sue the city.”
Hood believes that AHF has far greedier motives for its actions. “This is not about patient care,” she said, “this is about the 340b drug pricing program. An AIDS organization that is providing medications that encourage viral suppression is eligible for this program. The program offers a substantial profit on these medications. AHF didn’t get funded in the category that would have benefited them most from this program. It’s very lucrative.”
Hood further believes that AHF has shown no regard for the local Ryan White process, which typically awards smaller amounts to first-time grant requests, and then increases those awards as the agencies demonstrate they are good stewards of the funding. “The service organizations in this market have been good stewards of those dollars for more than 20 years, working together and being good partners with one another. AHF has not been a good partner, either in this market or in any other market I am aware of.”
“Every local agency named in the AHF lawsuit works together and makes referrals to one another. It creates a continuum of care. The city and parish know these things, and take them into consideration.”
“Just because AHF has come into this marketplace and bought up HIV practices to create a large patient population does not mean they are entitled to this funding, over those of us who have been doing this work for years” says Hood. “I find that offensive.”
Hood bemoans the fact that AHF dragged her agency and others into their legal wranglings. “They didn’t have to name all the other recipients. They don’t want us spending any of the money they think they’re going to get their hands on.”
AHF presumably remains dismayed. Dismayed, I tell you.
Wednesday, April 6th, 2016
In a profoundly troubling lawsuit against the City of Baton Rouge and local HIV/AIDS non-profits, the AIDS Healthcare Foundation (AHF) has forced federal funds to be withheld while AHF continues their litigious temper tantrum over not receiving a Ryan White Care Act grant award they requested. The vindictive action poses a real and present danger to services being provided to people with HIV in the area.
AHF, also known as The Walmart of AIDS, did not simply sue the city of Baton Rouge (the government entity responsible for the grant process). In an insanely destructive move, AHF also included in their litigation the local non-profit agencies that received funding — even though those agencies play no role in grant disbursement (read the nauseating lawsuit here).
As a result of this intimidating legal stunt, the city has voluntarily paused their contract process until a hearing can be held (contracts to agencies were due to be executed on March 1st). That means local grantees are not able to seek reimbursement for services they are providing right now to people living with HIV.
AHF, with an estimated $1 billion annual budget and led by its universally reviled CEO Michael Weinstein, had requested $1 million in Ryan White funding. They were granted $66,000, with the remainder awarded to established local agencies that have been providing services for years. This was the first Ryan White grant request in Baton Rouge by AHF, which crept into the area two years ago after buying an HIV practice and setting up shop with HIV/STD testing services.
“This hurts our clients,” said Matthew Valliere, CEO of Capitol City Family Health Center, one of several local service providers named in the lawsuit. “For AHF to put us as party to their litigation, it is shocking. And it may put a financial strain on our organization.”
That may be exactly what AHF has in mind. The largest provider of HIV services in the world is known for a long and colorful history of suing anything that moves. In one city after another, AHF has entered the marketplace and then either gobbled up local agencies or sued for a bigger piece of the federal funding pie. Just ask the local services providers in Dallas or West Palm Beach, cities which have faced similar AHF action.
In Baton Rouge, funders have had no choice but to withhold the execution of contracts until a hearing can be held on a temporary restraining order request filed by AHF. The hearing may not happen until May and perhaps later. In the meantime, local agencies must hold their breath and hope they will eventually receive their original grant award – while providing services out of their own pocket for as long as they are able.
For Family Health Center head Valliere, that means an average of $40,000 worth of monthly services is not being reimbursed to them as expected. “This is a bullying tactic,” he said. “We will find a way to continue providing services, but I hope it doesn’t go on too long.”
The HIV service agency CrescentCare Health (formerly NO/AIDS Task Force) is based in New Orleans but has a small satellite office in Baton Rouge. Even though they only receive grant monies in Baton Rouge for providing legal services – a service for which AHF did not even apply for funding – the agency has been named in the AHF lawsuit.
“We don’t have funds devoted to defending ourselves against a lawsuit,” said CrescentCare director Noel Twilbeck. “We never expected that we would get sued. Legal fees will have to come from unrestricted funds that would otherwise go to programs like primary medical care.”
Twilbeck said that CrescentCare considered trying to remove itself from the suit, but “we are standing in solidarity with our Baton Rouge friends.” He also finds it “laughable” that the AHF lawsuit contends the behemoth agency is suffering “serious and irreparable damage” because they didn’t receive the funding they requested.
“This is a bully trying to get their way,” Twilbeck said, pointing out that AHF made a reported $15 million in profits in 2012 in the United States alone. “Fortunately, the Baton Rouge agencies are coming together on this, because they view AHF as a predator and a bully.”
The Louisiana AIDS Advocacy Network (LAAN) has released a statement that is harshly critical of the AHF suit while spelling out its potentially chilling effect on people with HIV. “No state funds are available for HIV services,” the statement reads in part, “which make these federal funds vital to the lives of people living with HIV. Delaying these contracts could mean that people living with HIV, especially those without other resources, could miss doses of their medications, not be able to go to medical appointments and not see medical providers. All of these can be potentially life threatening to individuals living with HIV.”
LAAN is urging people to contact Baton Rouge Mayor Kip Holden (email: firstname.lastname@example.org phone: 225-389-3100) to express concern that delaying Ryan White funds will negatively impact people living with HIV.
Baton Rouge has been the victim of an AHF hissy fit before: last year, AHF withdrew its funding support at the last minute for a state-wide HIV advocacy event because one of the committee members is involved in a whistleblower lawsuit against them. AHF reinstated its support after their actions were exposed by My Fabulous Disease. All this nonsense is in addition to AHF’s misleading and discredited opposition to pre-exposure prophylaxis (PrEP).
In other news, AIDS Healthcare Foundation will be opening facilities in Baltimore, Maryland, by the end of this year. Now would be a good time for local agencies to find an attorney that has pro bono availability and a strong stomach.
Monday, April 4th, 2016
When the health of my close friend Ron began to rapidly decline in 1987, he made the decision to leave Los Angeles to return home to rural New York to be near his family. “Just long enough to feel a little better,” he told me at the time. It was a common trajectory in those days, usually undertaken not long after delivering the news to your family that you were gay and oh, by the way, had AIDS.
“Mark?” Ron called from the bedroom. “Did you get a lot of boxes? We’re going to need a lot, I think.” I was in the living room, sealing the music and video carton.
“Yes, Ron. I told you. I’m going to take all this to the mailing place right down the street. They’ll mail it home for you, okay?” I walked into the bedroom.
He sat on the bed, staring at stacks of clothes on the floor around him. They would all be sent along, he had insisted. Clothes for every season. It felt sadly optimistic. His athletic body was shockingly diminished, deflated into near nothingness.
“We need a lot of boxes,” he repeated. “You know what, Mark?”
I took a cardboard garment box that was leaning against a wall and began folding it into place.
“What, Ron?” I grabbed packing tape and sealed the flaps at one end. Ron sat staring at the floor, as if he were napping with his eyes open.
“Hey, Ron, what is it?” I called to him. He didn’t respond.
I knelt by his bed, collecting a stack of clothes, and looked into his face. His features held no expression, except for his eyes, which darted back and forth in a sort of panic.
“Ron? Are you doing okay?” I squeezed his knee. “Ron.”
Don’t you dare have some sort of seizure on me, I thought. That I could not handle, buddy. I felt a flash of anger for agreeing to help him, for having to be the sole remaining companion, the one not driven away by the hospital visits and the disfiguring lesions, the one who had to carry out this depressing task for him. And then, of course, I felt ashamed.
Who said you wouldn’t have to get your hands dirty, Mark? There’s a consequence for inexplicably remaining alive while AIDS punctures your social circle. There’s a certain result from being able to function normally and pack boxes while your friends aren’t so fortunate. There’s a price for your continued good health. And you’re looking at it.
“Ron?” I tried again. “Ron, can you understand me?”
He turned his face to mine. “Of course I understand you, Mark. You think I’m nuts?”
I was startled. “Well no, Ron, but you were – “
“I know everything that’s going on here, Mark!” He stood up a little too quickly, caught his balance, and began to pace around the piles of shirts and underwear. “I know that I am packing things up here, and you are helping me because I can’t fucking bend over without having some kind of stroke. Thank you, by the way. I know that everyone thinks that this is it for me, and that my sister is going to freak out when she sees me.“ He turned to me. “I know that I don’t need my Jane Fonda workout tapes anymore, do I, Mark?”
I couldn’t find words. He shuffled to the sink in the open bathroom. I lowered an armful of clothing into the box.
“There are more towels in here,” he said. “Give them to that old woman next door. Maybe give her this bathroom stuff too, this soap dish and all. She’s old. Maybe she can use this shit.”
His burst of exertion suddenly caught up with him and his body slumped. He held on to the counter top with both hands. I watched his face in the mirror above the sink.
“No, I’m not crazy yet,” he said in a tired voice. He bowed his head, catching his breath.
I couldn’t know what would await him when he made the move home. I had no idea that his panicked parents would soon place my 26-year-old friend in a nursing home, the only available option in his small town, or that Ron’s fate would include losing what was left of his mental faculties in a recreation room filled with the elderly. There was no way for me to predict that the increasingly rare phone calls from his sister would include the fact that if his mother had to witness Ron laying in his own feces one more time the poor woman would go quite mad.
Ron lifted his head and caught my gaze in the mirror. I was wrestling with the muscles in my face to keep from crying. His look suggested that it was he who felt sympathy. For me.
“I have to leave for a while, Ron,” I said. “Lesley went into intensive care this morning and I promised I would get over there to see him.”
Lesley, another close friend of mine, one who Ron didn’t particularly like. And now, the two were competing for the time and affections of our social circle as they raced to their tragic finish.
I stood up and began to gather my things to leave.
“This is just like Lesley,” he said suddenly.
I stopped and looked back at him.
“It figures he’d wanna die now,” he said. “This is just like him.”
Artwork courtesy of Alexander Binder.
(AIDS Dementia Complex [ARD] is associated with late-stage AIDS and was especially common in the United States during the early days of the crisis when there were no effective medications. It is believed to be the result of various factors that include a ruined immune system, medications, and infections such as toxoplasmosis.)
For the very first time on this blog, I am asking for a donation — but not for me, for Moveable Feast, the meal delivery HIV/AIDS agency in Baltimore for whom I am participating in Ride for the Feast, a 140-mile bike ride (!). Would you consider making a donation of any amount? It only takes two minutes, and you can make your tax-deductible contribution on my Ride for the Feast page here. If you have ever found my writing or advocacy helpful, this would be a lovely way to show some love. Thanks, my friends.
Saturday, March 5th, 2016
In a forsaken block of Santa Monica Boulevard, off the street and through an imposing industrial alley, a Hollywood disco opened in the late 1970s that made promises the other gay clubs were loathe to keep.
The two-story face of a clown, with an enormous, yawning mouth serving as the front doorway, stood sentry. There were no rules for entrance, no discerning bouncers selecting the lucky ones, no outfits to be appraised. Anyone who scraped together the cover charge was welcome.
Across town in the shining gay mecca of West Hollywood, dance clubs and bars like Studio One and Mother Lode pulsated with the new, synthesized beat of Donna Summer. Her mind-blowing dancefloor smash, “I Feel Love,” played on a seemingly endless loop. But love was often conditional in those clubs, which were populated by gay men with impossibly muscled bodies and skin only as dark as a California tan would allow. Love had standards.
Circus Disco — along with the Los Angeles black gay club, Jewel’s Catch One — practiced a truer level of acceptance, filling its dance floor with a largely Latino and black clientele, but the crowd didn’t simply cross racial divides. Peppered among the partying throngs were transgender pioneers and leather men and drag queens, gyrating to the new music of the B-52s and sharing powdery glass vials from one clutch of dancers to another.
I was one of those misfits when I discovered Circus Disco in the late 1980s. I bore the inner mark of the new plague, having tested positive for HIV in 1985, and it felt like a secret that disqualified me from the male magazine perfection of West Hollywood. The murderous storm of AIDS struck without interest in outward appearances, of course, but with my feelings of woeful damage I needed desperately to believe that Circus Disco was the oasis it promised to be.
It did not disappoint. A buoyant cross section of humanity greeted me each weekend to a tempestuous party where you could fall urgently in love while in line for the bathroom and furtive sexual fumblings happened in plain sight. The citywide racial tensions that would eventually lead the city into riots were mercifully muted. The dance floor crowd was as multi-colored as the light show.
Joyous exuberance reverberated with the thundering dance floor beat as shirtless men celebrated a confident sexuality and the limitless possibilities of life ahead. The constant thump! thump! thump! of the music was our clarion call and it proclaimed, Here! Here! Your tribe is here!
We were so beautiful, in ways we were much too young to know.
Circus Disco partied on through the 1990s and beyond, impervious to fickle music trends and even resisting pressure to remove the word “disco” from its name. The crowds ebbed over the years but the club never faltered, right through its recent closure, in the genuineness of its welcome.
And now, in a story that might only happen in Los Angeles, historic preservationists have convinced new property developers that the Circus Disco building warrants respect for its place in LGBT history. Portions of the club, such as the dance floor and mirrored ball and even the clown face entrance, will be incorporated into the design of the apartment building the site will become.
Like many of my dance partners from those nights at Circus Disco, I am now many years and thousands of miles from the magic of the club’s brightly lighted floor. We are a scattered people.
There are those, too, who were swept away by the firestorm of AIDS. Remembering the lost, their lives extinguished in the very years they found the community they sought, makes me all the more grateful that Circus Disco will be memorialized. It was as much a force for good in our community, in its own way, as any LGBT organization of that perilous time.
Circus Disco is lost to the ages now, but residents of the new apartment building would be wise to listen carefully for sounds coming from another era. The DJ is spinning and the disco divas are cooing, inviting legions of spirits back to the dance. There are boisterous people, a glare of silhouettes in a laser show, stepping onto the floor. The crowd is swaying to the beat and laughing and holding one another. They are all beautiful, and they know it at last.
And they feel love.