Ken Williams’s HIV activism sort of fell into his lap, much like his diagnosis did. He wasn’t aspiring to be an HIV activist — just like HIV wasn’t part of his “five-year plan,” when he was diagnosed in 2010. But after he woke up in a tailspin one morning, “a black queer body living with HIV, feeling suffocated, and needing to create a space enough to breathe,” Williams says, “I challenged myself to speak out.”
Since then, Williams (@kenlikebarbie) has become an eloquent speaker, a compelling storyteller, a diligent HIV activist, a constant media presence, and the creative force behind the award-winning video blog, Ken Like Barbie. He has shared his story on YouTube and collaborated on projects with the Black AIDS Institute, the Centers for Disease Control and Prevention, Greater Than AIDS, and HIV.gov (where he’s a regular blogger for the Black Voices project). Williams’s plenary speech at the 2016 U.S. Conference on AIDS was one of the year’s best.
Through his personal journey with HIV, Williams seeks to convey the nuances of his experience, he explains, “so when the historians do their research, they will know that black gay men do exist, and that doesn’t make us vectors or predators or disposable — but vibrant, impassioned individuals thriving in a fear-based society with very little support.”
Instead, Williams says, “Our narrative is that — despite this virus that is physically, socially, and politically trying to kill us every day — we are still here. There is something affirming and resilient about being a black gay man in America, living and loving out loud with HIV.”
Williams recently became part of amfAR’s Epic Voices campaign, sharing the inspirational and personal stories of people with HIV. He thinks what makes the Epic Voices campaign so important, “are the number of HIV-positive men and women who are exhausted with having to defend their right to intimacy, or access to healthcare, or other personal freedoms. I usually tell people that I am the epidemic — young, black, gay, male, diagnosed at the age of 26. Statistically speaking — my race, my gender, my HIV status — I wasn’t supposed to survive any of this.”
Many others with his same demographics simply don’t make it, and Williams knows that first-hand. “In my early 20s I had a friend, same age as me, die from AIDS-related complications,” he recalls. That death “hit so close to home” for Williams that “HIV felt like a 10-foot monster with claws and fangs chasing me. And then I remember how distant HIV got, like it no longer affected me — how removed I felt, like I had out-chased the monster until, years later, I was side-swiped by my own diagnosis.”
Yet it was his diagnosis that has driven him to make a difference in the world. Without it, he might not be where he is today. “Resisting against oppression is how I’ve been able to affect change,” Williams says. “Being visible has been the single most important thing I’ve done. I became an activist simply because I was aspiring to live.”