Knowing, Telling, Managing and Speaking Out: People Tell Real Stories about HIV

Tue, Apr 15, 2014   By Henry (Hank) Scott   

It started simply enough. Parker Trewin, senior communications director at Aria, a San Francisco tech firm, reached out to Jason Lankow, a friend who is CEO of Column Five, a marketing design firm in Newport Beach and Brooklyn, with a request for a donation for his upcoming AIDS/Lifecycle ride.

Rather than donating the $1,000 that Trewin suggested, Lankow offered something far more valuable: Column Five’s time, skill and energy in promoting not only Trewin’s ride but also an honest discussion about the stigma associated with HIV.

Parker Trewin

Parker Trewin

The result is a moving video called “My Status Is NOT a Secret” on a website of the same name. The video, in five chapters (Knowing, Telling, Managing, Advocacy, Now), presents the real life stories of men and women of various ages, races and ethnicities who are HIV positive and negative, but who share the concern about the stigma often associated with HIV infection and a belief that it’s essential to know one’s HIV status.

“You deserve to know your HIV status,” says a statement on the website that hosts the video. “Positive or negative, knowing your status gives you the power to act with confidence and care for yourself and your community. The choice of whether to share your status with others is yours, but knowing it ensures you have one.”

Opening the video is Trewin, who discovered in 2004 that he was HIV positive.

“I was quite frankly concerned about what my family and friends would say, and whether that would be an additional burden to me as I was still trying to figure things out,” he says. “This year on my birthday I decided to be upfront about my status.”

Trewin, 54, came out about his HIV status last summer to Lankow, and then in January decided to disclose it to his 83-year-old mother and 90-year-old father.

When Lankow offered Column Five’s services to Trewin, he turned to Ian Klein, collaborator with John Saint-Denis on “Open,” a moving video produced for the Impulse Group about a sero-discordant couple who open their relationship to another man. Klein is a senior producer at Column Five.

“My Status Is Not a Secret” was directed by Saint-Denis, whose Advisorie Group provides branding and marketing services for the design industry. Klein joined Saint-Denis, Trewin and Mimi Fuenzalida, an actor and cinematographer.

Tye Olson

Tye Olson

Among those in the video is Tye Olson, 26, a model and Outfest award-winning actor (“Watercolors,” “Tru Loved,” and “Brother’s War.”). In an especially moving, and sometimes painful, part of the video, Olson talks about how he revealed to his friends and his family that he was HIV positive.

Then there is Marissa, 26, who was born with HIV contracted from her drug addicted mother and was told by her father not to disclose her status. “And of course the first thing I did was run across the street and tell my godparents I had HIV… I asked them if they still loved me, and they said ‘Of course we do, why would we not love you?'”

Marissa was in first grade at the time. She went to school and immediately told everyone about her status. “I would have kids call me ‘HIV girl’,” she recalls. “Once I got to middle school there were a lot more people telling rumors about me….”

But Marissa moved past that. “Disclosing my status is nothing to me,” she says. “I’ll go into bars … and it’s like, ‘Hi my name is Marissa and I have HIV….'”

There are more stories of people both positive and negative, all of whom share a belief in the power of knowing one’s HIV status.

Saint-Denis and Klein say the goal of the video, other than helping Trewin raise money for the AIDS/Lifecycle ride in June, “is to grow a community that sees HIV in a different light.” Being HIV positive is becoming “normalized,” Saint-Denis said. “We want to share that the shame is disappearing.”

He and Klein said they decided to present the message in a series of individual videos because they thought it would have a more powerful impact than an interview with experts. “Story is the key word,” Klein said. “We wanted to use story as a different way to educate. “

“My goal is to get people to watch it and feel something,” Saint-Denis said. “I don’t want to teach people.”

The website offers viewers the option of why their status is not a secret.  But it doesn’t insist that one reveal one’s status. “It’s understandable why you may not share; a great deal of stigma still surrounds HIV. Many U.S. states can even prosecute in instances of known HIV exposure,” the site explains. “You should balance the risks with your well-being and that of others.”

It also gives viewers the option to give to Parker Trewin’s Lifecycle fundraising effort (the money goes to support the L.A. Gay & Lesbian Center and the San Francisco AIDS Foundation) and to support other riders.

My status is not a secret

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About Henry (Hank) Scott

Henry (Hank) Scott is publisher of WEHOville.com. Scott is a journalist and media business executive who has worked at newspapers as varied as the weekly Butner-Creedmoor (N.C.) News, circulation 1,200, and The New York Times. henry@wehoville.com

View all posts by Henry (Hank) Scott →

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