Connie Shearer is a voice for women and gender-nonconforming people living with or at risk for HIV.
When Shearer, who is nonbinary, was diagnosed in 1996, there weren’t many resources for women and gender-nonconforming folks. Every group they found was run by and for men, with a focus on gay men, which was understandable up to a point, as they were the group most affected by the epidemic. But Shearer says, “I will continue to say the same thing today that I said in 1996 — if you are not working to reach all people who are at risk of HIV, then you’re really only working to keep up with HIV and not end HIV. … We can’t end HIV if women are still diagnosing positive for HIV and also getting an AIDS diagnosis because our doctor either never thought to offer [testing] to us or did what my doctor tried to do and shame me for asking.”
These groups “are still being left out of the conversation, out of spaces at decision-making tables, and out of clinical trials,” Shearer says, and this is why the Las Vegas resident remains an activist. As cochair of the Nevada HIV Modernization Coalition, they recently were forced to write a letter to Gov. Steve Sisolak requesting the appointment of women and gender-nonconforming people living with HIV to the Task Force on HIV Exposure Modernization.
“I was forced to do that because they formed and met for six weeks without appointing any woman or GNC people living with HIV,” Shearer says. “I keep using the word ‘forced,’ because I do not want to be ‘that person.’ I don’t like being loud; I wish that I could be Mx. Happy and just smile, but I can’t.”
But Shearer will not be silenced. Their activities, besides cochairing the HIV Modernization Coalition, include public speaking, volunteering six hours a day on a crisis hotline (three hours before work, three hours after), and writing.
“I began writing in 2010 because I suffered carbon monoxide poisoning and was tethered to an oxygen machine and unable to do much of anything,” Shearer says. “What I could do is write, so I began a blog to talk about living with HIV and am still using my voice today to blog sometimes for the Well Project and PWN-USA,” the latter being Positive Women’s Network.
Shearer lives with their daughter, daughter-in-law, and grandson, and decompresses with music and sound therapy. To other potential HIV activists, Shearer says, “Only become an advocate if you are serious about helping people.” And to anyone facing the day-to-day challenges of living with HIV, they advise, “Take your meds, eat fruit and candy every day on top of your coffee, and dance, even if you don’t have any rhythm, dance every chance you get.”