what it feels like: activists confront and combat 'shame around living with hiv'
8 minute read
randy davis and jade elektra continue to fight against hiv stigma while being hiv-positive.
randy davis // jade elektra
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hiv is not the same infectious disease it was 40 years ago, but the stigma that surrounds people living with hiv often remains unchanged. for jade elektra, a well-known drag performer, actress, and hiv activist, being out with her status wasn’t always easy.
born and raised in florida, jade was diagnosed in 1990. letting others in on her new-found reality wasn’t just challenging, it was dangerous..
“i became hiv positive in 89’, but i didn’t get tested until 1990. part of my decision to leave tampa was that i didn’t want my family and friends to know that i was hiv positive because it was a different time back then. there’s a lot of stuff that could happen to you back then,” she said. “you could lose your job; you could lose your housing. all kinds of stuff.”
after leaving tampa, jade ended up in new york and then eventually toronto, where she is currently heavily involved in the lgbtq+ community, working towards ending the misinformation and stigma surrounding hiv and people who are hiv-positive.
randy davis, communications manager for the canadian aids society and hiv activist working with canfar, viiv healthcare, and casey house, wasn’t diagnosed until later on in life in 2015, and even then, being open about his hiv status was not as safe as it should be.
it wasn’t until he saw a local news broadcast about hiv, with the faces of those affected completely blurred out, that he realized the community needed a much larger voice.
“i couldn’t stand the idea of there being so much shame around living with hiv in 2017 when we have and still have effective treatment that leaves the virus so low in my system it’s completely undetectable,” he said.
two people diagnosed with hiv years apart have had to face the same fears and stigma surrounding the infectious disease. both decided not to take it lying down.
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the weight of a diagnosis and learning to live in a new reality
hearing you are hiv positive isn’t something anyone can prepare for. those words completely shattered jade’s view of the future and what kind of life she was going to be able to live.
“all i remember about the woman who gave me the results was that i heard her say, ‘you tested positive.’” jade said. “i really don’t remember anything else she said. i make a joke about this in my show that it sounded like the adults in a charlie brown cartoon. i didn’t hear anything else other than ‘you tested positive.’”
when jade was diagnosed, hiv was still primarily considered a death sentence. finding out that you may die far before you have the chance to truly live shook her in a way that few could understand.
“i was thinking, ‘i’m going to die,’” she said. “a couple of weeks after the diagnosis, i started making plans on what i was going to do with the rest of my life, and i came up with this plan that i was going to take out this big loan, and i was going to go and do all the things that i wanted to do.”
thankfully, after a few months, jade realized that she didn’t have to give up without a fight, and today, she works to help others find that same motivation.
randy spent the majority of his life closeted, married to a woman, hiding his genuine self for risk of backlash from his loved ones and his community. he got divorced in his late 30s and came out a year later, feeling he could finally live his truth.
“it wasn’t until a year afterwards (his divorce) that i came out as a gay man and felt comfortable enough to be my authentic self. and then life just got really crappy,” he said. “financially, relationship-wise. i had an estrangement from my children. i still beat myself up about that almost daily.”
it wasn’t until almost a decade after coming out that he was diagnosed with hiv. and while the diagnosis was hard, the fear of people close to him finding out was harder.
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“when i was first diagnosed, i did have someone threaten to disclose my status to my children, and this was when they were much younger. they’re 25 and 22 now, so it’s not an issue, and i’m very open about it,” he said. “but those were the things that, from the very onset of learning that i was living with hiv, i knew there was a target on my back.”
switching gears after a positive result
thanks to modern medicine, hiv no longer takes hold of the body in the way that most people still believe, but having a chronic illness to manage—regardless of the type—can be difficult.
for jade, who decided that hiv wasn’t going to stop her from living a long, healthy and fulfilling life, it was always in her to fight against adversity to get what she wanted.
“i started writing for the tampa tribune back when i was 11,” she said after recounting the story of how she went to the newspaper’s downtown office and told them why they needed her expertise.
“one day, i put on my best clothes and went downtown. our neighbour across the hall, his name was kim eisler. he was a reporter for the tampa tribune, and he had taken me there, so i knew where it was, and i knew the people to ask for,” she said, later continuing, “i don’t even know what i was thinking, but i just made this makeshift presentation, and i was like, ‘you have no one to write for kids.’ you need someone to write for kids.”
after that meeting, jade was the go-to journalist for kids with the tampa tribune at just 11 years old. that drive, even as a young child, still existed following her hiv diagnosis. only this time, she had to fight a little harder because of not only the health ramifications but also the stigma associated with hiv.
“my grandmother (who raised her) always just instilled in me that i can do whatever i want,” jade said. “so, that’s what i’ve done most of my life. it’s that i just get up, and i go, and i do it.”
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learning from a young age to be self-sufficient helped jade not only handle her diagnosis but also work toward changing the way people view hiv and make a difference in the world and the hiv community.
“giving back to the community really has been the thing that’s propelled me. i feel like as long as i’m giving back, i’m never going to be hungry. i’m never going to be homeless. i’m never going to be any of those things because i’ve helped a lot of people,” she said, later continuing, “my life is good now because i’ve made every day that i get up important by making sure that i talk with someone about being hiv positive to let them know that this is a very serious disease. this is something you should avoid, but if you do get it, this is how you can survive it.”
jade is currently involved in many efforts to help spread awareness surrounding hiv, including performing at conferences and working with organizations such as the fife house to help others who have tested positive get through the initial process and find their own silver lining.
randy’s upbringing was different from jade’s. growing up, he lived in a small town where many people held highly conservative views.
“i grew up in a small town with 500 kids in my high school. i have three brothers. my father was the president of the minor hockey association in the town i grew up in, and i was his only son who didn’t play hockey,” he said. “i was already the [homophobic slur], for lack of another term, when i was growing up, and the idea of coming out as gay back in 1985, the automatic assumption was, oh, you have aids. that close link was always there.”
“so, it was the aids crisis that kept me closeted for as long as it did because i was terrified of the idea that folks would think i have hiv.”
once randy was diagnosed with hiv, his access to care and the medical professionals was a saving grace at the beginning of his journey. one nurse, in particular, helped randy see the light in a way that no one else could.
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“she was the first person that said to me, ‘you know, there are a myriad of other things that are going to kill you long before hiv ever will,’” he said.
he later talks about his life now living with hiv and how, since the virus has been undetectable within his body for quite some time, “hiv is more about the work than it is about the illness (for me).”
now that randy is open with his hiv status, in a happy and healthy relationship with a husband he calls a “blessing,” he works to help others feel safe and combat the stigma and shame that so many people feel when hearing those words, ‘you tested positive.’
“one of the reasons why i speak so openly about living with hiv is because i feel this almost obligation because i am in a safe space, and i don’t have to worry about disclosing my status,” he said. “there’s a lot of folks who live with hiv that it is a real danger to disclose that status, you know. sex workers, for example, or transgender folks. it can mean the end of their life to disclose their status.”
he continues, “i get the odd idiot online and stupid comments that are made, but i’m also in a position where i know the facts, and i’m not afraid to fight back and talk to people about what the truth is about living with hiv in 2024. so, that’s why i do it and will continue to do it as long as i have to.”
randy is currently dedicating the majority of his professional time to working with several organizations geared toward stomping out the stigma attached to hiv and helping others live their lives to the fullest through his own social efforts and television show.
if you or someone you know has recently been diagnosed with hiv and is struggling, you can find helpful resources at many organizations across the country, including canfar, casey house, the fife house, and the canadian aids society. you can also keep up with randy or jade for events and other information surrounding hiv awareness and stigma through their socials linked here.
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