Terry Stogdell passes the activist torch to daughter Desiree
Terry Stogdell is not the kind of guy who blends easily into the background. Whether organizing a rock-climbing outing for his HIV positive buddies with hemophilia or denouncing Bayer Pharmaceuticals at a demo, Stogdell, 32, isn't like to escape attention.
"I'm a boat-rocker," he says. "I always have been and always will be." But in 1984, when this self-described "pissed-off hemo" found out he had been infected with HIV from the clotting factor he had injected, he didn't even know where to direct his anger. Having no grasp of the politics of AIDS, Terry leapt to the conclusion that his infection was all the fault of gay men who had the virus and had donated blood. "When I first tested positive, I wanted to go out and kill every faggot I saw," he says. "Then I started to get educated."
Terry began a long struggle to get off crystal meth and to become a better father to his daughter, Desiree, who was born HIV negative in 1985. In 1990 he started a peer program for HIV positive people with hemophilia and was later elected to the board of the Northern California chapter of the National Hemophilia Foundation (NHF). But Stogdell found the work both frustrating and emotionally draining. "I was networking with these wonderful HIV positive hemophiliacs," he says, "and it never occured to me that they would get sick and die." Now Terry estimates he has lost as many as 70 friends since 1985. "I learned that half of the hemophiliac population was infected with HIV in the early '80s because the drug companies didn't take blood-screening precautions," he says. "It infuriated me."
Yet every time Terry tried to push the NHF to take a stronger stand against the blood-products industry, he was told by his fellow board members to back off. "These companies give money to the National Hemophilia Foundation," he says. "The industry literally sold us HIV, and now they think they can buy our silence."
Terry's AIDS diagnosis came in 1993. With sole custody of his daughter and mounting political discontent, he quit the NHF board and turned to ACT UP/Golden Gate, a treatment activist group composed mainly of gay men who shared his sense of urgency. But Terry never left behind his hemophilia community; he sees his work as primarily about building bridges.
Terry admits that both communities have prejudices to overcome. "Many people who got HIV through shooting drugs or gay sex still feel their stigma comes from taking part in an activist society condemns, and part of their struggle is about that," he says. Meanwhile, as Terry sees it, many HIV positive people with hemophilia need to get rid of the "innocent victim" mentality. "We're stronger fighting together than separately."
In addition to his organizing around the Ricky Ray Hemophilia Relief Fund Act, Terry plans seasonal offensives against Bayer and other pharmaceuticals. He and fellow ACT UP activists are demanding that the drug giants pay the medical costs of those infected with HIV because of their negligence. "I'd like to go to bed tonight knowing that if I die tomorrow, the cost of my burial will be covered, and my daughter will be provided for," he says. "That the least they owe us."
And Terry is passing the activist torch to Desiree, age 11, another up-and-coming boat-rocker who takes part in protests and lectures classmates on AIDS. "She's something else," he says. "Don't be surprised if you read about her in the papers someday."