By Benjamin Ryan
Originally published on Advocate.com November 18 2010 5:00 AM ET
When Mark Ciano settled in San Francisco -- after two decades spent mostly overseas and then two years living with his parents in Florida when his father had cancer -- he had quite a bit of adjusting to do. He was a new kid on the block -- but a middle-aged kid with a spare tire around his waist. "I come from a big Italian family, and my mom knows how to cook for only 100," the 46-year-old says today, diverting responsibility for his extra weight.
Ciano, who had grown used to the melting-pot social scene in London, where his friends came from a diverse cross section of backgrounds, says the Bay Area seemed to be segregated, cliquish, and overly youth-oriented. He didn't want to have to go to a bar to meet people, so he joined a social group instead -- the local chapter of Positive Pedalers, a club for HIV-positive cycling enthusiasts. "I found a community and a group of people who I want to be around," he says. "And getting on the bike, I got back into really good shape."
Celebrating its 15th anniversary, PosPeds, as members refer to it, has more than 800 members across the country, a figure that has doubled in the past few years as more active HIVers like Ciano seek new ways to combine physical fitness with a social outlet involving like-minded folk. The group sponsors training rides in 20-plus U.S. and Canadian communities (and more are added regularly) and maintains a vivid, out-and-proud presence on the various AIDS rides that raise money for HIV treatment and other related services across the country.
A sort of activist group -- but wielding jerseys and toned thighs instead of placards and fists -- PosPeds has a core mission beyond simply getting its members in shape and making sure they have fun; it helps transform them into living contradictions of HIV-related stigma. Riders are encouraged, for example, to come out about their serostatus. To give them an edge when it comes to starting that conversation, each gets a bright red PosPeds jersey emblazoned with "I'm HIV-positve."
Michael Barron, director of AIDS/LifeCycle, a seven-day ride from San Francisco to Los Angeles each June, says the 200 to 250 members of PosPeds who participate in every ride raise at least $750,000 -- or about 7% of all donations -- each year. Furthermore, he says, the participants are an inspiration -- the poster men and women for the cause. "It's one thing to be in my position and to write the best marketing materials and to try to pitch the best stories to the media," Barron says, "but it's another thing to show people living with this disease and living with dignity and creating the positive role models that we need."
James Williams Jr., a 51-year-old attorney who found cycling was a much more practical fitness pursuit than horseback riding when he moved from Atlanta to New York City, says he sees it as his duty to wear the red jersey and put a healthy face on HIV. A couple of years ago he had his PosPeds shirt trimmed down so that he could wear it in the New York City triathlon. While running through the northern end of Central Park in the final leg, he says, "I heard a couple say, 'Oh, look, there's somebody that's got HIV.' And that was the neatest feeling in the world. I thought to myself, That's exactly why I wanted to do this as a PosPedaler. Our purpose is to say, 'You know we have this virus and we have obstacles. Yes, we have to take medicines, and there's some times when we can't do everything. But we can do a lot.'_"
Perhaps more important is the way the riders inspire one another, not just to maintain physical fitness but to move outside the dark cloud of stigma. David Duncan, a 57-year-old former campus planner for the University of California, Berkeley, who lives on disability in San Francisco, says he and his riding buddies have coined the phrase circling the table for the way that other LifeCycle riders hover at a nervous distance when they see the PosPeds information table, not sure if they're ready to come out about their own serostatus.
Duncan himself was once one of them. "It's a whole process," he says of disclosing he was HIV-positive by his at-first cautious association with the group. "Being positive in front of everybody else -- it was a huge thing to for me to do."
All anxieties aside, there probably isn't a more receptive audience to such a personal announcement than a group of fellow cyclists pedaling (and peddling) for AIDS service organizations. For anyone who participates in the San Francisco to L.A. ride, the highlight is the end of the third day -- designated PosPeds Night -- when the group's members share their stories at the dinner meeting and then invite anyone who is HIV-positive to stand and be recognized. "It's the most empowering thing that you could do," Williams says. "Before I left [on the ride], I had told only one person that I had the disease." Shirley Jaglowski, a "happy 50-year-old" from Salt Lake City who is a location manager for a car dealership, spoke on PosPeds Night her first year on the ride. "I remember telling my story," she recounts, "and afterward a woman came up to me and she was just bawling. She said, 'I'm positive too, and nobody knows it.' And I just remember crying with her and giving her a hug. We actually rode the next 200 miles together, side by side, just sharing our stories and sharing our strength."
But the message of hope and understanding also winds its way into the far nooks and crannies of American life. PosPeds board cochair Nathan Menard, a 49-year-old architect from Orange County, Calif., who has been HIV-positive for more than half his life, says, "I'm not your typical person living with HIV. I'm married, heterosexual, I have a wife and child." And doing fund-raising for AIDS/LifeCycle has allowed him to talk openly for the first time with people in his surrounding community, which doesn't exactly have HIV on its radar. "These are parents of my son's friends. It's one of those 'Oh, my gosh! I had no idea' types of things," he says of their reactions when he goes asking for donations and discloses his status. "And then they become avid supporters. They become spokespeople for the disease."
Participating in the rides "was the beginning of my new life, of being able to live and to understand that it wasn't something that I needed to be ashamed of," Menard says. "For 10 years I didn't do anything. I wouldn't even [spend time discussing my feelings about] being HIV-positive with my wife. Now I can openly talk about HIV."
Of his experiences riding with the group, he adds, "It's just nice to be able to have camaraderie with others that are positive. You always get into the conversation of what your numbers are -- what's your viral load, what's your T-cell count -- and how healthy you are."
Getting on the bike also just so happens to help nurture healthy bodies. "Cycling has enabled me to be in the best shape that I've ever been in my life," Williams says, proudly citing that at 5 feet 10 inches he weighs 165 pounds with 9% body fat. "And I'm 51 years old! I don't think I look it. I definitely don't feel it."
Ciano, who at the same height as Williams has dropped from 194 to 171 pounds and has watched his waist shrink from 33 to 31 inches, says looks are one thing, but the most important factor in his participation in the group is to keep HIV in the public consciousness. "Just like [what went] on with Haiti [after its devastating earthquake]," he says. "After a few months people start to forget what's really affecting all of us. And so by doing this, it helps us to remember those who unfortunately aren't able to be here now."