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A Southern Town Joins ACT UP in 'Small Town Rage'

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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.

NIH Protest Alana Oldham

"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!"

Group at taping

ACT UP Shreveport members today: (l-r) Alana Oldham, Gary Cathby, Buddy Williamson, Debbie Allen, Robert Darrrow, and Small Town Rage co-producer David Hylan.)

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.

SMallTownRageLOGOSo 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.

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 Kickstarter promotional video for Small Town Rage.

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.

Mark

(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 theirFacebook page or Twitter feed.)

The Wonderful, Stigma-Bashing 'Wizards of Poz'

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Any campaign that blends living with HIV with a sense of empowerment and joy always grabs my attention. Stigma remains one of the most damaging forces in our struggle to both combat new infections and support those of us with the virus.

Australian Nic Holas 33, co-created the social and advocacy platform for people living with HIV, The Institute of Many (TIM) only weeks after he tested HIV positive in 2012, and it nurtures exactly the kind of peer support that so many advocates find the most effective.

Wizard main photo

And now, TIM has launched The Wizards of Poz, a social media campaign that celebrates people living with HIV who are taking charge of their lives.

Nic and I spoke about his Wizards of Poz campaign, the Aussie epidemic, "glamorizing" HIV, and a certain sexy monkey.

So, Nic, you've taken one of the most iconic films loved by the gays... and made it gayer. That's no small feat.

Thanks! It was so much fun. The campaign all started from a joke that Jeff Lange (TIM's American-based co-founder) and I had - namely that I was the Wicked Witch of TIM who stirred trouble, and he was the Good Witch who would just float down every once in a while, smile and leave! When we started to dream up what the campaign looked like, we wanted to extend that image to other members of TIM, and honor their contribution - as well as send a new message to the wider HIV community.

Dorothy

TIM: Our Dorothy is a wide-eyed hipster dream in gingham cut offs, just starting his journey to "follow the undetectable viral load."

I also like the playful way in which you take subcultures such as queers, radical fairies, sissies, and leather queens and make them something to be exalted and enjoyed.

Those subcultures exist, and they're all valid! With this campaign, we're trying to celebrate all the diverse ways queer culture presents itself, in a way as a reaction to the pressure for us to "be normal" at the moment.

I love that a woman is the lioness.

It was so important to me that Abby Landy be our lioness. Positive women are very underrepresented in Australian media depictions of poz living, or when they are, it's often a betrayal/victim narrative. Abby has been very brave to step into the spotlight to tell her story, and I thought turning her into the anything-but-cowardly lioness was a fitting tribute.

Lioness

TIM: Our Lioness is today's young poz woman and is anything but cowardly, and in control of her sexuality and her choices.

How are racial demographics different down under? Here in the United States, including people of color in campaigns like this is important.

This is something that was a bit of a struggle. I could see when I was amassing our "cast" that it lacked diversity. I wanted to pay tribute to the TIM members who had put themselves out there in the media for TIM, but what that has helped me realize is what sort of narrative the media is looking for in Australia, or rather which narratives are being excluded. We have a burgeoning population of Sub-Saharan African migrants and refugees in Australia, plus Asian international students and migrants, and of course our Aboriginal and Torres Strait Islander First Australians. Those communities and their experiences with HIV need to be honored.

I laughed but wasn't a bit surprised to see Theodore, my hottie Aussie cameraman from my video reports at AIDS2014 in Melbourne, half naked and on his hands and knees! Thank you for completing the Theo fantasy shared by most everyone who meets him.

Ha! It's an honor and a privilege to find ways to bring Theo's bare ass to the world.

Monkey-1024x1024

TIM: The Flying Monkey won't let HIV stop him soaring high in the sky, no matter who tries to clip his wings.

In the materials for the campaign, you speak about "paying rent on our privilege to be HIV+ in Australia in 2015." I like the throwback to those who came earlier, and the sense of gratitude for our lives today. Tell me more about that.

"Paying rent on our privilege" is one of TIM's core beliefs. The movement started because Jeff (the Good Witch) and I weren't that knocked about by our diagnoses. For me, that meant that I owed it to the ones who fought and worked to give us that freedom, and to those diagnosed alongside us who still consider HIV to be a life-limiting event (not to mention of course the millions of PLHIV around the world who cannot access treatment, who are criminalized, and discriminated).

And oh my dear, you have to paint me a picture of what the photo shoot was like. I imagine strange colors and fur and feathers and exposed skin all over the place. And a lot of laughs.

Oh God, the shoot was ridiculous! I've done my fair share of wild shoots in the past, and I knew how long things take and how mad it can get. This is the first time though I've had to art direct something while being painted Wicked Witch green! The incredible thing was that practically everyone on the shoot was HIV+, and if they weren't poz they were dating someone that was and got roped in to help! It's a testament to the creative power and community spirit of the poz universe.

TinMan-1024x1024

TIM: Tin Man is a flashback to the heydays of 90s raver queer culture, and knows his big heart can find love on the dance floor, online, or anywhere - and his status won't stop him.

Have you had any negative reactions to the campaign?

Some people have criticized the campaign saying it glamorizes HIV.

Oh. That again.

It's ridiculous. The campaign glamourizes HIV+ people. And why shouldn't we feel glamorous and fuckable and hot? If you can't tell the difference between making poz people feel good about themselves and making HIV seem "attractive," then you can't see us beyond our status. And that makes you a pozphobic fool.

Scarecrow-1024x1024

TIM: Scarecrow is a 100% organic radical faerie who turns toxicity into spirituality, and who knows HIV requires philosophy - and he's got the brain for it.

What is the state of the HIV epidemic in Australia, by the way?

There are approximately 26,000 people diagnosed with HIV here. One of the leading responses has been needle exchange programs and sex worker empowerment, which means gay men are the main affected population (not the only one, of course).  There are virtually no AIDS deaths any more due to treatment uptake in the 90% because of universal healthcare. So, we have the luxury of focusing on stigma.

As progressive as Australia is, many people will be surprised to learn that pre-exposure prophylaxis (PrEP) isn't available there.

PrEP isn't an inevitability here. Truvada still needs to be approved for use as PrEP, then put on something called the PBS (Pharmaceutical Benefits Scheme) so anyone can access it. It is still two years away, at least.

Glinda-1024x1024

TIM: The Good Witch is a sissy swagger jock. Along with the Wicked Witch, these witches are two sides of the same coin doing what needs to be done to keep The Land of Poz moving forward, in their own unique way - naughty or nice.

Is TIM limited to those in Australia?  There may be people elsewhere who see this campaign and want to join in the online social support you offer.

The TIM group is global! It's all back to the "paying rent on our privilege" thing. The TIM digital space (a private group on Facebook) not only lets people find community, it can put our HIV into perspective. As I've had to say in the past, "TIM wasn't set up to help you, it was set up so we could help each other."

That's great. If the FB group is private, how might people who read this story join the group if they are interested?

Anyone interested can check out this page on the website, or contact us through thepublic Facebook page.

WickedWitch-1024x1024

TIM: The Wicked Witch is a a dirty leather queen. Along with the Good Witch, these witches are two sides of the same coin doing what needs to be done to keep The Land of Poz moving forward, in their own unique way - naughty or nice.

Thanks for this work, Nic.

No worries!

Mark

(Campaign models are all members of The Institute of Many, and include Sebastian Robinson as Scarecrow, Dean Camilleri as Tin Man, Charlie Tredway as Dorothy, Jeff Lange as Glinda, Theodore Tsipiras as Winged Monkey, Abby Landy as the Lioness, and Nic Holas the the Wicked Witch.)

The Visual AIDS Web Gallery 'Proud to be Positive'

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June is Pride Month in the LGBT community, and I was honored to be asked by Visual AIDS to curate a digital exhibit 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?

Proud to be Positive ImageIt 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.

Mark

POZ Surviving Life Itself Imagep.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.

The Odds of Love

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This story will never be as romantic as I would like it to be. And it could never be as romantic as it has been to live it.

MarkMichaelAIDS2012On the evening of July 22, 2012, Michael Mitchell went to a mixer at Cobalt, a gay club in Washington, DC. The international AIDS conference was being held in town and Michael, a DC resident who had once served as director of an AIDS agency, decided on a whim to go check it out.

I had been shooting video all day for my video blog conference coverage and thought the name of the mixer -- Meet the Men of AIDS2012! - had an inviting ring to it.

During the reception Michael and I engaged in some mutual cruising from across the bar before Michael, God bless him, made his move. He walked up and introduced himself. Even with dance music thumping and a boisterous crowd surrounding us, he had an adorable humility about him that came through loud and clear.

So did the remnants of a southern twang, and we quickly established we were both southerners born in Alabama. We talked about his work implementing the Affordable Care Act and I was struck by how proud he was to help provide health insurance to millions of Americans.

"I'm a blogger, I write about HIV," I said after a while.

"Oh, I know," Michael answered, and he grinned. "I've been reading you for years." He leaned in closer and flexed his dimples. "And you should get new pictures. You're much better looking in person."

I swallowed the line like a cold glass of sweet tea.

For the remaining nights of the conference, I sat at the foot of Michael's bed and edited video footage into the wee hours while he slept. We toured the Global Village at the conference center and got our picture taken (above). We held hands, casually and almost immediately. When I left a few days later there were tears at the bus stop.

You would think that after many years writing about living joyfully with HIV that my own happiness would be a given. That's hardly been the case. After several false starts and some complete misfires -- primarily due to my own deficiencies -- I had stopped believing I would ever get the whole relationship thing right. What are the odds of getting another chance, after so many wasted ones?

"I am not a very good boyfriend," I told Michael in a frank conversation early on, the kind that is meant to drive the poor guy away before he is taken hostage. "I've either been terribly immature or in active drug addiction. I've never been faithful, or even very thoughtful."

"That doesn't mean you can't be," he replied, as if it were the simplest response in the world, as if none of my past faults had any bearing on the here and now. Suddenly it clicked, a switch in my head I had been grappling with my whole adult life, and Michael's statement made perfect sense. Why couldn't I just behave differently, and do it because I love Michael and to hurt him would crush me?

I am going to marry that man.

On June 6, a small group of friends and family will gather in the lush woods of Pennsylvania a few feet away from where I proposed on Christmas Eve (below). During our ceremony I will make promises that I have every intention, at long, long last, of keeping. Our vows will be emotional but a mere formality, because for three years we have adored one another without a single cruel word between us.

Engagement Horizonatal crop

 

When I was growing up I could never find anything in the house; the right socks, my school assignment, my lunch money. I would call downstairs to mother and complain that I just couldn't find it, whatever it was.

"You haven't found it yet," she would reply with the preternatural calm that had mercifully accompanied her through years of raising six children.

My search has continued, for those things misplaced or never claimed to begin with, and I have actually found a few of them. Feeling comfortable in my own skin. Self-esteem. Sobriety. An acceptance of life on its own terms. An unselfish love for another human being.

The search may have been maddening, but the guidance of a good mom usually holds true.

I just hadn't found them yet.

Mark

AIDS Healthcare Foundation (AHF) has quietly reinstated funding to a Louisiana AIDS advocacy event, two weeks after pulling their support because one of its organizers is involved in a whistleblower lawsuit against AHF. And they really mean it this time - and would prefer that we believe the withdrawal of support never happened.

LAAN event picThe 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 psychic 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 ever met Dorian-gray Alexander. Or that they know what an email looks like or how to read.

LAAN logo 2The loss of support had sent LAAN scrambling, and they started a GoFundMe page to make up for the loss. 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.

Fingers crossed.

Mark

The AIDS Healthcare Foundation scandal has taken a downright creepy turn.

Only one day after a stunning whistleblower lawsuit against AIDS Healthcare Foundation (AHF) was made public, the embattled organization withdrew funding from an upcoming HIV advocacy event because one of the plaintiffs is involved in its planning, according to records obtained by My Fabulous Disease. The apparent strong-arm tactic has reached beyond whistleblower Jack Carrel and has had a "real impact" on the State-wide advocacy event, according to organizers.

weinstein imageThe 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. Jack Carrel, one of the plaintiffs named in the lawsuit against AHF, is helping to organize the event.

In a voice mail to Carrel, a local AHF staffer states that Carrel's involvement in the whistleblower case was the reason for AHF's withdrawal. Carrel is participating in the suit alongside former AHF managers Mauricio Ferrer of Florida and Shawn Loftis of New York.

The lead counsel for the whistleblowers believes this is a retaliatory action on the part of AHF head Michael Weinstein that unfairly punishes his client and those around him. "This reaction by Mr. Weinstein is at its core indicative of what this lawsuit is about," said attorney Theodore Leopold of Cohen Milstein. "Although on the surface they claim that people with HIV are their primary concern, when you lift the veil it is all about profitability. They end up taking this (lawsuit) out on those who are most in need of services."

According to Leopold, there is no legal reason for AHF to stop participating in the event simply because Jack Carrrel is one of the people helping to organize it. "There is nothing to prevent them from communicating with Jack," said Leopold, as long as they do not discuss the pending suit. No other solution to Jack Carrel being involved in the advocacy effort were offered or discussed with organizers, according to email documents and a voice mail.

The whistleblower suit claims Carrel was fired from his position as AHF's Director of Public Health in the Southern Bureau after raising questions of financial impropriety. The suit claims fraud, conspiracy, and that AHF unlawfully acquired patients for its clinics. Having worked in the field for thirty years, Carrel has since continued advocating as a person living with HIV and was hired last year as an HIV health educator for a Baton Rouge non-profit organization.

In an exclusive interview, Carrel explained that he had been working quite comfortably with the local AHF staffer to arrange for buses to bring people living with HIV to Baton Rouge for a day of advocacy training and visits to elected officials. The event is organized by theLouisiana AIDS Advocacy Network (LAAN), for which Carrel volunteers as Chair of the Mobilization Committee.

"I met in person with the AHF staff person on Friday (March 3) and we planned it all out," Carrel said. "She was working on identifying the bus company and making the plans for it. We were good to go."

The AHF employee coordinated the effort with Carrel and others right up until Wednesday, April 8, the day the whistleblower suit was made public. On Thursday, April 9, Carrel received the following email from the AHF staffer:

Hi Jack,
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.

Hours later, the same AHF employee left Carrel a voice mail and explicitly stated the reason AHF was pulling their support. The voice message transcript:

"Hi Jack how ya doing, this is (the AHF staffer), I've been trying to reach you since yesterday, but 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. Alright. Talk to you later, thanks, bye."

Carrel said the AHF staffer "is a great person. She's been active here for a number of years," and believes she was caught in a terrible situation created by AHF management. "There are many dedicated people working at AHF," said Carrel.

LAAN logoThe withdrawal of organizational and financial support has left organizers with LAAN holding the bag less than five weeks before the event date of May 19.

"This has had an impact," said Dorian-gray Alexander, the Chair of LAAN, "because we had been planning on AHF support to increase the number of participants lobbying their legislature this year. We're working to find a Plan B." Others involved in State advocacy declined to be interviewed, citing the risk of further impact on people living with HIV in the State.

It is not clear why AHF, if they had concerns about working with Carrel, did not work with other organizers instead, rather than engaging in a seemingly punitive action that affected the entire event and the people hoping to attend. It is also unclear if AHF will now withdraw all funds or cease collaborating with any person or agency associated with Jack Carell, something their actions suggest is entirely possible. Considering how close-knit the Louisiana HIV advocacy movement is, such a blanket blacklist could have a troubling effect.

On its web site, AHF includes legislative advocacy as one of its primary activities. That is, when they are not undermining the State-wide advocacy efforts organized in part by people they don't like. Allegedly.

AHF could not be reached for comment.

Mark



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