Film Aims to Shed Stigma Around HIV
On January 8, 2004, cyclist Parker Trewin’s life changed forever. That was the day Trewin discovered he was HIV-positive.
"There’s a misconception within the community that there’s no longer a stigma around being positive," said Trewin. "When people tell me that, I have to remind them that they believe this is the case only because they’re negative. They’re not aware of the issues that positive means to a person who is positive."
A fit and trim 54-year-old who spends four hours a day on a exercycle, Trewin spoke in front of a crowd that recently gathered at Magnet, the gay men’s health center in the Castro, to see the premiere of a documentary that Trewin spearheaded called "My Status is Not a Secret."
The film evolved out of a fundraising effort that Trewin began last year when he decided to participate in this year’s AIDS/LifeCycle event, a 545-mile bicycle ride from San Francisco to Los Angeles that raises money for the San Francisco AIDS Foundation and the LA Gay and Lesbian Center.
"I had participated in the event in previous years, but this year I really wanted to go all out with my fundraising efforts," he said. "I decided I would aim to raise $1,000 for every year of my life, for a total of $54,000. In the course of fundraising, I approached my friend Jason Lankow and asked him for $1,000 - but he decided he wanted to offer something a little more generous."
Lankow is the owner of Column Five, a marketing communications, info-graphics, web and video production firm in the city. What he offered was a remarkable gift - 200 hours of his company’s time, an amount that "far exceeded my request," said Trewin. Through a series of discussions about what could be done with that time, both a website and a movie - My Status is Not a Secret - were developed to raise awareness about the particular challenges that HIV-positive people still face.
Nine participants were flown to Los Angeles for a weekend and asked to share their stories of being HIV-positive. Faces appear and speak from a variety of different races, classes, and genders - as well as the circumstances regarding the subject’s acquisition of the virus. The result is a haunting reminder that an illness that many think of as "manageable" is only manageable with a great deal of heartache - and courage.
The audience at Magnet for the May 10 viewing was mostly comprised of the filmmakers, the participants in the film, and their friends. Among those in attendance was Steve Gibson, the executive director of Magnet, which through 11 years has operated as a gay men’s sexual health center, with over 15,000 clinical visits in the previous year many of which relate to HIV. Magnet is now part of the AIDS foundation.
" ’My Status is Not a Secret’ highlights the issues that many in our community are not aware of, simply because they aren’t directly confronted with the issue of a positive status," said Gibson.
Magnet counselor and concierge Matt Beard, 45, discovered that he was positive in 2000. He said that in some circles, it’s still common for people to speak pejoratively about HIV, asking questions like, "Are you clean or dirty?" in assessing status. But he feels that while there’s a lot less stigma to being HIV-positive than there used to be, he also thinks that it all depends on what ZIP code you happen to be living in.
"Here in San Francisco, it’s less shameful than perhaps it would be elsewhere," he said. "I have to be upfront about my status with anyone I play with, and I do get nervous when I’m outside the Bay Area."
Beard is long past the stages of discovery and disclosure to family and friends, but he admits that the issue of managing the illness isn’t easy for anyone.
"Managing HIV is a bit like having a monkey on your back," said Beard. "I have to get checked every three months by a doctor, and I have to take care of myself and worry more than other people about ailments like a cold or a flu."
Actor Tye Olson was one of those at the screening. Olson, 26, was already in the midst of an impressive film career when he learned at the age of 21 that he had contracted HIV.
"I felt so disconnected from the rest of humanity when I discovered I was positive," said Olson, who appeared in the film. "My world was turned upside down. I was already out as a gay man, but I felt like this would be the end of my career."
Olson left Los Angeles and came to San Francisco, where he got in touch with the AIDS Healthcare Foundation.
"AHF totally swept me up and gave me case management and a sense that I wouldn’t have to do it alone," he said. "I knew I wanted to give back in some way and that’s how I came to find the AIDS/LifeCycle."
Participating on an AIDS/LifeCycle team dubbed "the Misfits" with Trewin for two consecutive years, Olson was a first choice to appear in the film, and he graciously accepted.
Broken up into distinct sections that include discovery, disclosure, and management of the virus, the film is not an easy experience. As one participant mused, the notion that HIV is "manageable" presumes many things, including access to health care and the ability to tolerate the medications. Still, as another subject noted, the arrival of protease inhibitors in the mid-1990s changed many lives, as both he and many others were completely intolerant of AZT and similar experimental drugs that are no longer on the scene.
"Many of the women that I talk to that have HIV do not tell their families," Tina Henderson, Ph.D., an African American woman, said in the film. "I always encourage them to find at least one person in their family that they could tell because if they could have that one person in their corner, the support would be invaluable. But many do not, because the stigma is so great in our community that they carry the very real fear that disclosure would lead them to be discarded."
In addition to Trewin, Olson, and Henderson, the other people featured in the film include Tim Matheson, Gabriel Rocha-Zendejas, Charlie Wellborn, Marissa Smith, Michael Eisman, and Namir Nasir.
"My Status is Not a Secret" can be found online at www.mystatusisnotasecret.com