Posts Tagged ‘aids’
Wednesday, September 23rd, 2015
When Miss Florida 1992, Leanza Cornett, competed for the crown of Miss America 1993, she didn’t just have gay hearts aflutter over our love for pageant competitions. We adored her because she proudly chose an AIDS awareness platform — and she meant it down to her lovely bones.
My interview with the groundbreaking title-holder is proof that, more than twenty years later, she is as feisty as ever. Our chat includes her HIV advocacy memories, some backstage dish from the pageant, recovery, sex, her love for the gays, and whatever happened to that jeweled, delicate crown.
Tell me about your exposure, as it were, to the AIDS crisis prior to becoming Miss Florida in 1992. Was it already on your mind?
The first time I heard the word “AIDS” I was 11 years old. It was 1982 and I heard a newscaster say the word and what I remember most was that it was a disease that was killing people. I was in my very small Appalachian hometown of Big Stone Gap, Virginia, and I went into full panic mode because I had eaten almost an entire box of what I thought was candy, called “AYDS” at my grandmother’s house. (AYDS was a chocolate diet suppressant, I found out later). So, as an 11 year old, I thought I was surely doomed. Fast forward, as years progressed so did the disease and thankfully so did our knowledge. When I was 16, I began working professionally in theater and met someone living with AIDS, an actor and a friend. Suddenly, the news story had a face, a name and a relationship with me.
During 1991, the year you were crowned Miss Florida, nearly 30,000 people in the US died of AIDS, and it was the leading cause of death among those age 24-44. It’s sometimes easy to forget the nightmare of those statistics.
By 1991, I was volunteering at two different places in Florida. Hope and Help, was an HIV service organization in Orlando. I did everything from answering phones to taking clients to doctor appointments. That’s where I met Guy Carswell, who became my best friend. I took him to appointments where he would have his Karposi Sarcoma (KS) lesions frozen off. I left every appointment with him in tears but also feeling incredibly empowered that the doctors were making strides toward a cure.
I saw an article in the Orlando Sentinel about a couple who had decided to take in foster children that were born with HIV. Jim and Charlene White turned their home into a non-profit organization called Serenity House and I began volunteering twice a week, taking care of those sweet children. Some were newborn infants and a few were toddlers. It was that year that I competed in Miss Florida and won. So yes, it was very much already on my mind and a huge part of my life.
Was AIDS your platform for the Miss Florida pageant?
No, and I regret that. I listened to people who said I’d never win, it was too controversial. I always felt like that was a compromise I should never have made. But, in the long run, if it had been something standing in the way, I may never have had the national platform I ended up with. Funny how things work out.
I had decided to champion AIDS as my cause going to Miss America no matter what. I met with the Executive Director of Miss Florida and told her and the rest of the Board that it wasn’t an option for me to do or speak out for anything else. The Florida board and everyone I worked with supported me wholeheartedly. I was surprised, simply because in 1992 the only people you heard about as activists were groups like ACT UP.
I absolutely must know about the final moments, among the finalists, before you were crowned and when you name was called as Miss America 1992. Please, spare no emotional detail! I live vicariously for this sort of thing.
I knew I was going to make Top Ten at Miss America, not because I was super egotistical or clairvoyant, but because a hairdresser had seen the list and I was on it and she told me. I even knew where I was in the placement — number six. So I was pretty thrilled with just that alone. Once I made it to the Top Five and I got to speak and answer questions about my platform on stage, that was the cherry on top. For me, personally, that would’ve been enough.
Thank God for video because I honestly don’t remember those final moments except for what I witness in watching it back now. I remember saying to Miss Iowa (Cathy Herd) that she would make a great Miss America. Everyone thought she would win — she was a double preliminary winner. I remember when Regis Philbin announced me as the new Miss America that it must be a mistake. I was wearing white gloves and I remember thinking that they were borrowed and I didn’t want to get makeup on them when I wiped my tears. I thought about the boyfriend who’d broken up with me and hoped he and his whole family were watching. I was just stunned. Completely stunned. Have never been so shocked in my whole life.
Hold on one minute. Your boyfriend broke up with you before the pageant? Is the best revenge winning Miss America?
No, he broke up with me my first year of college, and funny enough, we’re still friends today. But he broke my heart and I wanted to see him squirm, that’s for sure.
I happen to have a sash and crown in the back of my closet, for the 2015 Miss Summer Serenity Pageant, a camp drag thing they do in Washington to benefit people in recovery like me. So, take that. I didn’t cry when I won, I was very regal. Although those sharp stays in the crown were killing me.
I love it that you have a crown and sash…everyone in recovery deserves that but I’m especially glad you won!
Are contestants by and large sincere and gracious behind the scenes, worse, or somewhere in between, like all of us?
I think by the time most contestants get to Miss America, the catty ones have been weeded out. Girls are girls just like gays are gays (laughs) but it’s kept in check during pageant week. It felt less like a competition and more like putting on a great show. I’m still friends and communicate often with several of the girls from my year.
I know gay men who can rattle off former title-holders, their states, and what color they wore for swimsuit. I remember actual squeals coming from my gay friends when we saw you backstage at the Shanti Tribute to Peter Allen in 1993. We’re talking high-pitched sirens of delight.
I’m very, very proud to have been able to speak out on behalf of People Living with AIDS and gay men who probably suffered the most, especially during those early years. I think I confused the lesbians, because they typically hated Miss America, but loved anyone who stood up for AIDS. I was a conundrum!
Of course, your appearance at that event for Shanti was a bittersweet moment for me, as you know I have written about. You accompanied our founding director, Daniel P. Warner, to the event, and he was covered in KS lesions. You handled yourself with such graciousness toward him, holding tight to his arm.
Because I was so closely involved as a volunteer prior to ever winning, I felt really comfortable with a hands on, no-holds barred approach. I was criticized and questioned many times along the way. I remember I was photographed at a hospital kissing a child who was HIV positive and it made the front page of the paper. I got so much mail over that!
Thanks for referring to us as “people living with AIDS” during that time. You know your language.
I was reading an article published in People Magazine about the AIDS epidemic and the journalist kept referring to the people she was profiling as “victims.” I wrote a letter to People, correcting the journalist and explaining how important it was to write about “people living with AIDS” as opposed to victims. They published the letter, and a few months later I was in attendance at a Ryan White Awards banquet and Greg Louganis was a speaker. He cited my letter to People and thanked me for standing up for PLWAs. It was a God-shot for me, proof that standing up and speaking out reaches to so many places.
Speaking of God, you’re a woman of faith, and so many people with AIDS were traumatized by some of the rhetoric by religious fundamentalists during the early years. I’m thinking Jerry Falwell, for instance. How did you reconcile that, or explain to conservatives the importance of ministering, in the truest sense, to those living with the disease?
Great question. Well, I don’t know anyone who hasn’t been traumatized by religious fundamentalists at some point, no matter if it had to do with AIDS or anything else. I definitely felt the sting of that while I was in the thick of advocacy. Thankfully, I have a lot of Biblical training and knowledge, and anytime I felt I had to reconcile anything, I could always refer to the love, the merciful love that Christ shows to all of us. I understand that even more, in recovery, because that gift of powerlessness — knowing that we can’t control what people think or say or believe — it’s very freeing. The most important thing is to love, to show tolerance. I recall telling a minister once, when he criticized me about how vocal I was, that perhaps he should just pray for me and leave the rest to God.
It feels like we still get hung up talking about sex even today, which only benefits the spread of HIV, yet you were teaching people how to use a condom 25 years ago. Is our reticence about sex still the biggest obstacle?
I think we’ve certainly come a long way when it comes to talking about sex, and sexuality. As a parent now, I think the biggest obstacle is knowing when to have an open discussion with kids, because they are much more open minded about almost everything — race, gender issues, sexuality, differences. I think it’s incredibly important to have age appropriate, honest conversations with children as early as possible. This helps them grow into tolerant, open minded adults, which is what the generation before ours, and our own as well, missed out on. I also think that adults need to be exposed to that same honest talk, through schools, clubs, churches… Talking about sex has never scared me, but the results of NOT talking about it absolutely scare the hell out of me.
You were part of the ceremonies when the entire AIDS Quilt appeared on the Ellipse in Washington, DC, in 1992. I still can’t walk through a display of the quilt without losing it. What kind of impact did it have on you then?
Oh my goodness. That was one of the most powerful moments I’ve ever experienced. I traveled quite a bit with the Quilt and worked so closely with NAMES Project. Yes, the impact stays with me.
Did you make a panel?
I did make a panel for Guy when he passed. It still remains one of the most emotionally charged and difficult thing I’ve ever done. Labor of love doesn’t even begin to describe it.
How do you feel about the arrival of pre-exposure prophylaxis (PrEP), the pill that prevents HIV infection? For me, it’s the kind of thing we prayed for back in the day, but the uptake among those at risk of infection has been slow.
Wouldn’t the landscape of the disease be so very different if that had been available “back in the day?” I know I would take it, and I would encourage anyone who’s sexually active to do the same. I think any kind of shame in taking a preventative pill would pale in comparison to the possible ramifications for not taking it. That’s not to say that there should be ANY shame in contracting and living with HIV/AIDS. Men and women who I respect, admire and love with all my heart are living with the disease, but would, I’m pretty certain choose not to if they could.
You’re in Florida now, hosting a morning show called The Chat. How’s life today, and does HIV advocacy still have a presence in it?
Life is so good. I’m on a leave from the show for now, so I can spend some time with my two boys and family in California, but I’ll be back! The show is formatted like The View, with very opinionated, funny, smart women and it’s really fun and informative, too. I stay involved with HIV/AIDS organizations. I don’t have the national platform like I did in 1992-93 but whenever I’m asked to do anything, I say yes. I advocate as much as I can and will for as long as people remain uneducated and people living with HIV/AIDS are ignored or mistreated.
Many gay men like myself can take a kind of bittersweet pride in having stepped up at a time when it felt like the world had turned against us. And you were our ally when you didn’t have to be. I hope you still take a lot of pride in that.
I really do. And thank you. It’s one of the best decisions I ever made to step into the ring and fight with all of you, gay and straight alike. I’m so proud of what we have accomplished and continue to accomplish. It isn’t lost on me that I was, as Miss America, invited into places that other activists weren’t. Churches, schools, Rotary Clubs, private organizations, the White House. I am so very proud to have been able to use my title to make a difference and have the absolute time of my life doing it. The friendships that were born through advocacy are some of the most important and meaningful relationships I have. I worked with some real rock stars. I’m very grateful.
When was the last time you put your Miss America crown on? If you haven’t done it in many years I am going to be really disappointed.
Honey, every time I vacuum that crown is on. Haha! No, actually I put it on while doing The Chat last year. It’s here in California with me now, and since you mentioned it I may just have to put it on today just for fun.
Oh yes, please. You know I love you for that.
Ironically, my producer on the show put it on and broke it! It was so funny. She was mortified. So, a little super glue and it’s all good.
Lucky for us, your spirit is unbreakable. Thank you Leanza, for so many things.
And thank you. Your spirit and passion is contagious and inspiring. I mean that.
I inspire Miss America! I’m telling everyone. Take care, and think of me when you vacuum.
You take care as well, and thank you!
(Crowning photo from Miss America 1993 DVD; Portrait photo courtesy Miss America pageant; Photo of Daniel P. Warner and Leanza Cornett by Karen Ocamb; present-day photo by Renee Parenteau Photography)
Tuesday, September 15th, 2015
Not to get all southern gothic on you, but I depend upon the kindness of strangers. Especially when producing video blogs at conferences.
“Excuse me, would you please just hold this camera and point it at me while I talk to these people?” I must have said that sentence at least 40 times during the United States Conference on AIDS (USCA), held recently in Washington, DC. Every single interview you see in my video blog below was shot by whomever was wandering by at the time. Thanks, y’all!
The video contains three AIDS czars, one stripper pole, a ferocious batch of trans protestors, and more inspirational front-line workers than you can shake a stick at. My congratulations to the National Minority AIDS Council for their famously creative production of the weekend.
The spirit shared by the advocates, healthcare providers, and organizations who convened for USCA was electrifying, and just the boost many of us need to keep our energy up and our dedication renewed.
Oh, and special thanks to the CDC’s Act Against AIDS campaign for letting me take over their Instagram page during the conference (follow them here), and to Gilead Sciences for sponsoring the “Mind the Gap” session on social media and inviting me to host it.
I love what I do. I love the work you’re doing, too. As always, you are welcome to re-post my content, share it, take the YouTube video above and post it within your page, whatever might help share the messages of this amazing event and the awesome people who attended.
Thanks, my friends, and please be well.
(The photo above was the selfie the Social to Mobile speakers took at the end of our session, and includes – left to right – YouTube star Davey Wavey, blogger Guy Anthony, Michelle Samplin-Salgado of AIDS.gov, Luvvie Ajayi of the Red Pump Project, Miguel Gomez of AIDS.gov, myself, and Michael Crawford from Freedom to Marry.)
Tags: advocacy, aids, conferences, criminalization, culture, gay, help others, hiv, physician, politics, PrEP, recovery, research, serosorting, Sexuality, testing
Posted in Family and Friends, Gay Life, Living with HIV/AIDS, My Fabulous Disease, News, Prevention and Policy | 6 Comments »
Wednesday, August 26th, 2015
When Alana Oldham was only 17 years old, she found out the meaning of activism. A close friend had received an AIDS diagnosis and he wasn’t expected to live very long. Alana wanted to take action — to make a difference and vent her grief and frustration — but there were two major obstacles in her way.
It was 1989, and she lived in Shreveport, Louisiana.
“I had to do what I could to help my friend,” says Alana. “What was happening was cruel. People were discriminated against everywhere. Another friend of mine was fired from his job for having AIDS.”
And so, Alana Oldham did something in Shreveport that many people assume was only possible in much larger cities. She accepted an invitation from founding member Debbie Allen to attend an ACT UP meeting, one of the first to be held by the fledgling Shreveport group. And very soon thereafter, Alana took to the streets of her southern home town as part of angry protests. (Alana in 1990, above center.)
Robert Darrow, a founding member of ACT UP Shreveport, was right by her side. After years away from home, living in New York City and dealing with his own AIDS diagnosis, Robert had returned to Shreveport to die near his family. Instead, his health stabilized as he took part in a small town revolution.
“We were an angry bunch of young people,” Robert said. “We were angry at local doctors for turning us away. We were angry at judgmental families. Even at the only local clinic that would treat us, they installed an exhaust fan to get rid of the air we breathed.”
The group of activists were stunningly effective, showing up regularly on the front page of The Shreveport Times and on local television, and leading to the formation of an HIV clinic and a community-based AIDS service agency, The Philadelphia Center.
ACT UP New York activist Peter Staley (profiled in the Oscar-nominated documentary How to Survive a Plague) recalls taking notice. “I remember the thrill we got in New York when we heard about the launch of ACT UP Shreveport,” he said. “We had breached the Deep South!”
But not everyone in Shreveport was a fan.
“Even people in the gay community wanted us to go away,” said Robert. “They thought we were appalling.” Robert believes it was more difficult for ACT UP Shreveport to speak out than activists elsewhere, citing the hugely conservative majority in Louisiana. The disapproval of in-your-face activism also mirrored the self-hatred felt by so many gay men living in the Bible Belt.
David Hylan was one of those men. Married and closeted at the time, David watched ACT UP from the sidelines. “They were scary,” he said. “The radical nature of it was off-putting, especially since the south found all gay people immoral. And now there was this deadly disease.”
David realizes now that his discomfort had as much to do with his own masked sexuality as it did with the angry street activists he saw on the local news.
So it feels satisfyingly, poetic even, that David is now co-producer of Small Town Rage: Fighting Back in the Deep South, a documentary in the works about the history of ACT UP Shreveport. The film features interviews with many of the surviving activists and with family members of those who were lost to the epidemic.
A new Kickstarter campaign has already raised one-third of the project’s $15,000 budget. Dozens of hours of interviews have been filmed, and funds raised will cover remaining production costs and efforts to feature Small Town Rage at film festivals. Tom Viola, the influential head of Broadway Cares/Equity Fights AIDS, has issued a personal appeal in support of the project on his Facebook page.
“This whole journey has been a learning experience,” said David Hylan. “I’ve come to appreciate the people who were just fighting for their dignity.” His personal evolution led to a second marriage earlier this year, when David married his boyfriend.
The Philadelphia Center in Shreveport, forged by the efforts of ACT UP, remains the only HIV service provider in northern Louisiana.
Robert Darrow, the ACT UP member who had gone home to die and helped form ACT UP instead, served as The Philadelphia Center’s first executive director. Robert says that of all ACT UP Shreveport’s accomplishments, he is most proud that the agency serves thousands of clients. And there’s something else that gives him pride.
“I’m proud we did not remain silent,” he says.
(Visit the Small Town Rage site and consider even a modest token of support. I pledged $25 but any amount is welcome. Stay up to date on the film’s progress through their Facebook page or Twitter feed.)
Thursday, June 25th, 2015
(I was proud to join four fellow activists contributing to this story, which originally appeared on the site HIV Equal. If you have ever wondered what all the fuss is about — or think the conflicts activists have with AIDS Healthcare Foundation are just industry “inside baseball” — here are ten reasons to believe otherwise.)
You would think that the largest global HIV and AIDS service organization with the biggest budget a non-profit could ask for would be interested in removing the stigma of HIV and working in unison with people living with the virus. But even a passing glance at AIDS Healthcare Foundation’s (AHF) record of offenses against the community it claims to serve says otherwise.
It is unfair to color the efforts of the people of AHF as categorically corrupt. The massive organization is staffed with thousands of wonderful, passionate, and well-meaning people who are unfairly criticized and whose work is slighted. There are fantastic doctors and wonderful programs that do a great deal of good under the AHF brand, but this does little to remove the stains created by the poor leadership and direction of one man: Michael Weinstein.
In the past 15 years, Weinstein has racked up quite the record of wrongdoings against the collective effort to reduce HIV transmission and stigma. Well known HIV activists Peter Staley, Mark S. King, Eric Paul Leue, Mathew Rodriguez, and Tyler Curry assembled a list of the top 10 worst offenses of AHF by way of Weinstein.
1. Anti-Union Practices
In 2013, when AHF medical doctors were overworked in understaffed clinics, they felt that the quality of patient care was being ignored and wanted to unionize under the National Union of Healthcare Workers. Medical staff told the Los Angeles Times that decisions were driven by concerns for profit, not patient care, but AHF said that they considered doctors “management,” and Weinstein said any efforts to unionize that included doctors were “tainted.
If AHF or Weinstein did deny its doctors the right to unionize, AHF squarely falls not only against its own medical staff, but implies that it does not want its clients to have the highest standard of care – deliberately shunting the health of HIV-positive people onto the backburner. — Mathew Rodriguez, HIV activist and community editor of TheBody.com
2. Paid Editorials Campaigning Against PrEP
I guess its good to be king, because no matter how skewed your opinion may be, your dollar will always get your words published. On June 16, 2015, Weinstein paid to distribute his most recent editorial ad campaign, “The War on Prevention.” Although AHF’s stance has changed significantly since the days where the organization called the pill a “party drug,” Weinstein still trumpets the use of condoms over PrEP as the only effective large-scale measure of preventing HIV transmission.
“AIDS Healthcare Foundation is not against PrEP,” Weinstein writes. “Truvada can absolutely be the right decision for specific patients who, in consultation with their doctors, decide this is the best choice. However, the entire body of scientific data demonstrates that Truvada will not be successful as a mass public health intervention. Yet, this is exactly what PrEP advocates, including the Centers for Disease Control and Prevention, recommend.”
To clarify, the CDC is not in the business of PrEP advocacy, but rather scientific research. There are no specific scientific claims that Weinstien tries to disprove in the “advertorial.” But he does give plenty of unsubstantiated statements himself, such as, “Mass PrEP administration is a dangerous experiment that is not supported by medical science and is currently resisted by doctors and patients alike.”
Sounds scary, huh? It is also bullshit. Yet, this advertisement ran in LGBT newspapers and magazines in eight markets nationwide (Chicago, South Florida, San Francisco Bay Area, Washington D.C., Seattle, Dallas, New York, and Los Angeles). — Tyler Curry, HIV activist and senior editor of HIV Equal Online
3. Anti-Science AIDS Activism
AIDS treatment activism has a beautiful legacy, built by groups like Project Inform, ACT UP New York, Treatment Action Group (TAG), and South Africa’s Treatment Action Campaign (TAC). Collectively, we’ve helped change the course of AIDS, and saved millions of lives. One of our central tenants is that science should drive our advocacy. Science has been our compass, and our source of credibility and power to do the most good for the most people. Science has kept us from letting the personal dogma of any single activist steer the movement in a harmful direction.
Michael Weinstein has been spitting on this legacy for almost 15 years, long before he launched his PrEP denialism campaign. He has been spitting on the graves of lost heroes, like Martin Delaney, Project Inform’s founder, who warned me years ago that Weinstein was “dangerous” and “self-serving.” He has been spitting on the graves of Spencer Cox, and Carlton Hogan, who were instrumental in pushing us towards a science-driven path. Some of us should be forgiven for feeling protective of the legacy of AIDS activism built by these fallen comrades, and for our anger at those who arrogantly rebuke it. — Peter Staley, HIV activist and founder of Treatment Action Group (TAG)
4. Stigma-Fueled, Anti-PrEP Messaging
In April 2014, Weinstein called Truvada for PrEP a “party drug,” that would give gay and bisexual men a license to have unprotected sex, which would lead to a “public health disaster.” Weinstein’s “party drug” comment is disrespectful to anyone who has ever had sex — or plans to. Firstly, calling any HIV medication a “party drug” is disrespectful to HIV-positive people who take the drug in order to suppress the virus and live fully realized lives.
The sex-negative comment, borne of internalized homophobia, shames people of all sexualities who derive meaning from sexual activities — whether natural or with a condom — and is an ultra-conservative attack on (generally gay) people’s identities as sexual beings. His comment is also completely gender-blind and ignores women, straight and queer, who enjoy condomless sex on PrEP or use PrEP in order to have a child — you know, a real party. — Mathew Rodriguez, community editor of TheBody.com
5. Overbilling of Federal Funds in Los Angeles County
A California Judge ruled in April 2015 that, “AIDS Healthcare Foundation must face claims by Los Angeles County officials that it overbilled the county $5.2 million for patient treatment.” It is alleged that, similar to the overbilling claims in Florida, AHF has been defrauding federal-funding sources for people affected by HIV in L.A. County for about eight years. In addition to the $5.2 million, which was discovered in audits, the county has had to spend over $1.8 million to defend itself against lawsuits involving AHF. Considering the scarcity of public health funds, a loss of $7 million is a serious threat to much needed services for people affected by HIV in the county.
Ensuing the overbilling charges against AHF in L.A. County, now retired Supervisor Zev Yaroslavsky said of Weinstein: “He’s used his nonprofit organization in a crass and bullying political way to get his way, which is to avoid being held accountable.”
Afterwards, an internal email authored by Weinstein was discovered that read, “We need to go after Zev [Yaroslavsky] directly and hard. He is the real power behind our problems with the county on porn, the audit and fee-for service. Plus, he is a lame duck and an arrogant jerk. His Berman-Waxman power base is dead and he and others need to be taught a lesson.” — Eric Paul Leue, HIV activist and director of sexual health and education at Kink.com
6. Fear-Based Safe-Sex Campaigns That Further HIV Stigma
A recent series of AHF advertisements depicted two people or various races and gender in bed, presumably post-coitus, with the caption “Trust him?”
This stigmatic view of sex and trust is both reductive in personal responsibility and stigmatizing towards HIV-positive people. It suggests that people living with the disease are akin to criminals who lie in order to have sex, or even intentionally spread the virus. Sure, the people behind the AHF campaign may argue differently. However, it is hard to ignore the criminal theme of the advertisements that, by default, further marginalize people living with HIV and keeps fear in the forefront of safer sex messaging. As one Facebook user stated, “This does not say ‘fear HIV.’ It says, ‘fear people living with HIV.’” — Tyler Curry, HIV activist and senior editor of HIV Equal Online
7. Intimidating Other Organizations, People, and Practices Who Get In Their Way
The famously litigious agency has sued (or threatened to sue) many individuals and organizations in their path over the years, including counties, cities, departments of health, and even smaller agencies with whom AHF had territorial disputes. AHF even withdrew funding from a Louisiana advocacy event when they learned a plaintiff in their whistleblower lawsuit was involved in its planning. After this was revealed, they reinstated the funding without apology — and promptly counter-sued the whistleblowers. AHF’s latest strategy is to simply gobble up the competition, as in the recent announcement they have acquired the largest community-based agency in the south, AID Atlanta. — Mark S. King, HIV activist and writer at MyFabulousDisease.com
8. Financial Leveraging Against Smaller Organizations
In a 2014 lawsuit against L.A. County, AHF’s attorney, Samantha Azulay, argued for the invalidation of county funding contracts with smaller HIV and AIDS organizations with the words: “…You know, there might be some impact on these contracts, but maybe you’ve got to cut up a couple trees to save the forest.”
Reach LA, a youth organization with specific focus on HIV-affected African-American, Latino, and transgender youth, was among the “couple of trees” and it lost $100,000 funding.
In a 2013 dispute, AHF refused to pay rent for a space it had occupied since 2003 from Maitri, an AIDS hospice in San Francisco. The dispute arose when AHF refused to pay fair market rent for the property after opting for the renewal of the rent contract. Maitri has an operating budget of about $2 million, while Weinstein claims that AHF has a budget of $1 billion. The rent refusal caused Maitri an approximate loss of more than $300,000. AHF only had to pay $60,000. — Eric Paul Leue, HIV activist and director of sexual health and education at Kink.com
9. Forcing Condoms in Porn
In the last two years, AHF has led a costly media campaign to push forward legislation that would enforce condom use in adult film productions. But what may sounded like a good idea can actually be a dangerous limitation of access to other and possibly more adequate prevention options — and it threatens performers with serious infringements on medical and personal privacy. For the past five years, many public health officials have repeatedly argued that this was a waste of money, as the adult film industry, with zero on-set HIV infections over the past ten years, is not where the epidemic demands our attention.
In a recent hearing in front of the California Occupational Safety & Health Standards Board, 19 organizations, numerous performers, and unaffiliated medical professionals all opposed AHFs proposal, which Weinstein is now trying to push through in form of a state-ballot initiative. Many are appalled by AHFs proposal to ignore highly efficacious and proven prevention options such as PrEP and specific industry-developed testing protocols, all-the-while removing performer’s rights for personal choice to access and control. — Eric Paul Leue, HIV activist and director of sexual health and education at Kink.com
10. An Alleged Pattern of Criminal Conspiracy
A stunning whistle-blower lawsuit made public this year against AHF charges the agency with ten counts of defrauding the government, conspiracy, and a “multi-State kickback scheme” to maintain service quotas and keep the government-funded gravy train rolling. The suit, brought by three former senior staff members of the agency, includes internal documents that outline payments to both staff members and clients in an attempt to direct people who test positive into care at an AHF clinic — without properly offering them choices to seek care elsewhere. This strategy, known as “captive care,” then allegedly allows AHF to bill freely for client services obtained illegally, according to the lawsuit. — Mark S. King, HIV activist and writer at MyFabulousDisease.com
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.
Saturday, May 9th, 2015
“A boy’s best friend is his mother.”
— Norman Bates, Psycho
I was standing at the ticket counter of the movie theater and couldn’t believe my ears. They were telling me that Theater of Blood, with the great Vincent Price, was rated “R” and they were not letting me in without a parent. I was a horror-movie obsessed boy of 12, and was inconsolable. “I won’t look at any sexy stuff,” I remember pleading, “I just came for the gore!”
With visions of decapitations fading like an old blood stain, I made the long walk back home and exposed my broken heart to Mother, who made one of the grandest gestures of my childhood: she took me back for the late show. On a school night.
It wouldn’t be the last time she had my back. Over the years she proved a trustworthy ally, and this was never more true than in the 1980’s, when gay men often lost their mothers — hell, their entire families – when an AIDS diagnosis was revealed.
Mom never abandoned me or my gay older brother, Dick (is there no gayer name than Dick King? Did my parents consult the Falcon Video Book of Baby Names?). I tested positive in 1985, and Mom immediately went to work educating herself on HIV.
My brother was spared HIV infection but suffered its cruelty nevertheless: his lover of 13 years, Emil, died of AIDS in the early, scorched-earth years of the epidemic.
In this video, I sat Mom down to find out things I’ve never asked before. What did she really feel when she found out I was positive? Did she believe I would die? Do mothers have a right to know? What advice would she offer other families? We also talk about the loss of Emil and the repercussions from it we still feel today.
Mom is no expert. She isn’t an AIDS researcher and she doesn’t march on Washington. She just loves her kids and tries to understand what is happening in their lives and how she can help. If your mother is like mine, we have a lot to celebrate (or remember) this Mother’s Day weekend.
Enjoy the video, and please, stay well.
Tuesday, April 21st, 2015
AIDS Healthcare Foundation (AHF) has quietly reinstated funding to a Louisiana AIDS advocacy event, two weeks after pulling their support because one of the event organizers is involved in a whistleblower lawsuit against AHF. But AHF is really, totally committed to supporting the event this time, they say, and also claim the withdrawal of funding never happened in the first place because, well, they say so. Despite their own records to the contrary.
The AHF monies were meant to provide transportation for dozens of Louisiana residents living with HIV to travel to Baton Rouge to meet with their State legislators (the 2014 event at right), organized by the Louisiana AIDS Advocacy Network (LAAN). Jack Carrel, one of the plaintiffs named in the whistleblower lawsuit against AHF, is a volunteer helping to organize the event.
The seemingly punitive action against those working with Carrel and the people they serve is backed up by email and voice mail records, but don’t tell that to AHF, which has taken a peculiar stance on the withdrawal of support: they didn’t do it.
In an April 17 email to Dorian-gray Alexander, Chair of LAAN, from AHF Southern Bureau Chief Michael Kahane, Kahane writes:
This email will confirm that AHF NEVER reversed its position to support LAAN by providing transportation to this event. In point of fact, (AHF staffer) has continued working to reserve the bus and I believe she has communicated all of these details to LAAN. I’m really not sure what more we can do to reassure you that we are committed to supporting LAAN on this issue, but if there is something more please let me know. But please also accept this email as a commitment that AHF is providing transportation for LAAN to the event (…)
Well, if it’s in writing from AHF, it must be true. Except that their withdrawal of funding for the event had also been in writing, in an April 9 email from the local AHF advocacy staffer to whistleblower Jack Carrel himself. That email read:
Sorry, unfortunately at this time we, AIDS Healthcare Foundation, cannot participate in the lobby day scheduled for May 19, 2015, nor can we provide monetary resources for transportation, for May 18, 2015 and May 19, 2015. Thanks and sorry for any inconveniences.
Sounds pretty definitive. And all official-sounding and stuff. It seems unlikely the staffer was having a psychotic break when she sent it. And in case there was any doubt, the AHF staffer also left Carrel a voice message in which she explicitly spelled out why AHF was pulling the funds.
“… unfortunately, uh, we are unable to fund the buses due to your name being on a lawsuit against AHF and it breaks my heart but, um, sorry but we cannot uh, continue to, to do that…”
So you can imagine how confused LAAN Chair Alexander was when AHF told him (soon after my posting on all this) that AHF was, in fact, committed to the event. Alexander asked for it in writing. Again.
“I didn’t want to make assumptions,” Alexander told me. “I have had some back-and-forth with AHF in the last two weeks. They agreed to continue working with us, and I just felt I needed someone to confirm it in writing.”
Let’s all hope AHF’s commitment to serving people with HIV in Louisiana is worth, well, the computer screen it’s written on. AHF’s denial that the support was withdrawn in the first place not only defies the facts, it comes without explanation – or apology.
“That would have been nice,” Alexander said. “But I didn’t ask for an apology.” And AHF could always deny that they apologized anyway. Or that they even know Dorian-gray Alexander. Or that they know what an email looks like or how to read.
The loss of support had sent LAAN scrambling, and they started a GoFundMe page to make up for the loss hours after my posting about all this. The $1,600 raised will now help provide food and lodging for the people attending their advocacy event, slated for May 19. That is, if AHF sticks to their most recent pronouncement.
“We’re all volunteers at LAAN,” said Alexander. “And this is a tough state to advocate for HIV issues.” Louisiana does not have Medicaid expansion and New Orleans ranks second in the nation of cities with new HIV infections.
It’s good to know AHF and their local “advocacy consultant” has (re)committed to an actual advocacy event in a state that desperately needs the help.
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.
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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