Ahead of World AIDS Day, Positively Aware presented a webinar, Resilience—Stories of A Day with HIV, celebrating the photos that were posted for the magazine’s social media-based anti-stigma campaign. “I think it’s important to show us as living, and not dying, with HIV,” Charles Sanchez said as the virtual program began. “Everything with this campaign, every picture that you see, is an example of people joyously living their lives, whether they’re at their doctor’s office getting their blood drawn, or they’re with their families or their work. All the pictures are affirming and fantastic.”
Accompanying Sanchez in the program were HIV advocates Davina Conner Otalor and Jax Kelly, who joined me in talking with a few of the people who took part in A Day with HIV to ask them about the story behind their photo and share their experience in overcoming stigma.
Held every year on the first day of autumn—September 22, last year—A Day with HIV depicts 24 hours in the lives of people affected by stigma by encouraging everyone everywhere to take a snapshot of their day on that date and post it to their social media with a caption that mentions the time and location of their photo, and what inspired them to take it, accompanied by the hashtag #adaywithhiv. This year, about 250 pictures were posted, representing 15 countries around the world in addition to the U.S.
There’s a perception that people living with HIV don’t look healthy, Sanchez said, so for A Day with HIV he wanted to show off the progress he’d made by regularly working out. On a whim, he took a shirtless selfie for the first time. Sanchez, who is a contributing editor for TheBody.com and contributing writer for Poz magazine, also created and stars in Merce!, a musical comedy web series about a flamboyant and optimistic middle-aged gay man living with HIV in New York City.
Sanchez introduced Elijah Palles, a trans gay man from Phoenix. Palles wears many hats and a variety of identities. In addition to his job as a mental health therapist at the Southwest Center for HIV/AIDS, he works with transgender youth in the community, and sits on a number of boards, including RipplePHX, a local HIV outreach organization, and the Jim Collins Foundation, a national trans affirmation surgery grant program. He is also a drag king, performing under the stage name Eddie Broadway for over 10 years; most recently, he became Mr. Trans USA.
“I have been out about eight or so years, I’ve been medically transitioning,” Palles said. “I also was married for a little bit to a woman, and then I came out as gay. A year later, I was diagnosed with HIV. So, there’re a lot of layers there. Stigma on top of stigma, right?”
He credits the activists that have come before him. “But there still is this layer of stigma when it comes to trans people, trans masculine people not being served but also being underrepresented,” he said. “I know it’s still out there. I experience it mostly with the medical community because they don’t know what to do with me. It’s kind of like, Okay, well, you’re trans but you’re also positive.”
About a year and a half ago, he was diagnosed with HIV. For World AIDS Day 2020, he disclosed his HIV status in a video on social media. A colleague and friend at work urged him to take part in A Day with HIV. “He was like, You have to be part of this!” Palles said. So, he submitted a picture of himself at work, which was chosen for one of four versions of the foldout cover of the November+December 2021 issue of Positively Aware.
“Most of my social media is primarily Eddie Broadway drag-related, and A Day with HIV spoke to me with me as a person,” he said. “Because I am one of just a handful of trans masculine individuals that I know of who are HIV-positive and public about it, I wanted to make it about me, my mental health practice, who I am. It was really important to show me as a person, in my office in my center.”
Whereas his disclosure video a year earlier drew a mixed reaction, with some acquaintances pulling away from him, there was a different response to his picture.
“This photo, after being a year positive, it brought a lot of people kind of out of the woodwork— who maybe aren’t LGBTQ, aren’t part of the community, aren’t necessarily allies of the community, but people I’ve known since I was little—and the support and love that they had for me was eye-opening,” he said. “They were able to reach out to me, ask me questions, feel kind of normal with having the conversation about what it means to be positive, what it means to be undetectable. It was a bridge between my community now and my former self. That was really nice.”
“One of the things that impresses me a lot about you is that you’re so authentically you, and unapologetic about that,” Sanchez responded as their portion of the program was concluding, “and I think when you are authentic, you give people permission to be who they are as well.”
Davina Conner introduced herself for the next segment. Diagnosed at age 27, she has lived with HIV for 24 years, but had kept it secret.
“I actually lived 17 years of my life, not knowing one person who lived with HIV, not ever being able to have a conversation with someone who lived with what I lived with, and been able to share that with them—it was just me, myself, and I,” Conner said. “When you live that way, you feel like you’re the only person who is living with this. I knew I wasn’t the only one. It’s just that I was living in this little box, taking care of my children, and going through a rough marriage. That was all that I actually knew until I started to become an HIV advocate.”
Today, Connor is a public speaker and the creative engagement outreach specialist for Prevention Access Campaign, the organization that launched U=U (undetectable equals untransmittable, the message that a person living with HIV who is on antiretroviral treatment and has an undetectable viral load cannot transmit the virus to someone through sex). She also hosts her own podcast, Pozitively Dee’s Discussion.
“When I [saw] A Day with HIV, it had only been some months that I had shared my diagnosis with the world, and A Day with HIV inspired me to be a part of it,” she said. Driving with her sister that day in 2015, Conner suddenly told her to pull over to the side of the road so she could take an outdoors picture, which surprised her by becoming one of the covers that year.
Conner introduced Ciarra (“Ci Ci”) Covin, who is a program coordinator for The Well Project and has written for the organization’s A Girl Like Me blog since 2018. She also recently served as an ambassador for the CDC’s Let’s Stop HIV Together campaign. Diagnosed 13 years ago, Covin gave birth on A Day with HIV.
“The whole day before, I was in labor, in pain, and I had been sharing my personal journey of pregnancy with my Instagram family,” she said. “Social media has been a great outlet for advocacy. On that morning, the 22nd at 9:48 a.m., I finally gave birth. Everyone had been anticipating this baby, so I was like, Okay, let me share. I got on Instagram and saw other advocates posting #adaywithhiv. I was like, Wow! It was powerful to me. I didn’t realize how powerful it could be to someone else. It turned into this really big thing because my baby—my second HIV-negative child—was born on A Day with HIV.”
Covin’s Instagram picture of baby Zuri also became a cover photo. “If my younger self could have seen that, I would have been inspired sooner,” she said.
She still wrestles with stigma, she admits. “To this day, when I speak of stigma, usually the first thing that pops in my head is the internal sigma that I feel, sometimes every day,” she said. “The messaging that we receive from the outside world coming in can so heavily affect how you feel about yourself.”
But if the image of a newborn can make a powerful statement, Covin said she has felt its impact. “The response from the community—how much you have helped me, how I’m inspired or, keep doing what you’re doing—you think that no one’s listening to you, that you’re just talking to yourself,” she said. “To receive that validation back because of such a powerful post, it means a lot to me.”
A Day with HIV was also the 80th birthday of Maurice Greenham, of Stoke-on-Kent, a city in England. “Not only am I now 80, but I’ve been living with HIV for an awful long time,” Greenham said. “I’ve been with it for 37 years.”
“I changed careers in 1983, from education into professional theatre, so I was very keen in hearing what both Charles and Elijah had to say,” he said, referring to the earlier conversation between Sanchez and Palles, “because [performing] is a part of my life, too. In 1984, when I was given my HIV diagnosis, I just thought it was the end and that I was going to—I was angry because I thought I was going to lose my new career. But I was asymptomatic for the first 10 years. And then I got seriously ill. I developed AIDS, and was given six months to live. My AIDS-defining illness was HIV-related encephalopathy, which leads to dementia. It was after that, when I didn’t die, that I kept fighting. So, keeping my mind active was vital.”
The approval of the first protease inhibitors in 1995 marked a turning point in HIV treatment—and for Greenham. He started organizing concerts with the local choir and musicians for World AIDS Day and other events.
“It was incredible, that spirit of generosity of the folks of Stoke-on-Trent, that they were willing to give their time and their talents to the cause,” he said. “And that sort of empowered me. It was from that time onwards, that I started to speak out as someone openly gay living with HIV.”
Discovering Positively Aware and its campaign, the simplicity of taking a picture and writing a caption appealed to him. “So, I was astonished when I wound up on the cover, opposite the picture of a newborn baby,” he said referring to the foldout cover he shares with Covin’s baby Zuri.
The final conversation was led by Jax Kelly, president of Let’s Kick ASS Palm Springs, an organization dedicated to the survivors of the early plague years of the AIDS epidemic. He is also treasurer of The Reunion Project. Calling out a pin he was wearing, Kelly said raising awareness of U=U had been an important part of his messaging when he was Mr. Palm Springs Leather 2018.
“I’ve been positive since 2006,” he said. “One of the things that I wanted to do was to break out of my shell. I didn’t like the idea that I was forced to actually come out again, having come out as a gay man years before, only to have to come out as an HIV-positive person. So, I did a billboard for an AIDS organization in Los Angeles. It was so empowering for me because I could pose in front of it, and point to it. It was just a great way to take all the stigma out of being HIV-positive.”
Kelly spoke with Sascha Rex, who lives in Bonn, Germany, and had taken his journey to become public about his HIV status. Rex, 45, was diagnosed with HIV in July 2020, at the height of the COVID-19 pandemic’s first wave.
“It was an interesting experience having a pandemic around and struggling with another virus,” he said, referring to the problems getting connected to support systems during the shutdowns. “I started talking about my diagnosis, in March, April [of 2021] on social media. I’m very active on Twitter, and there, I saw this initiative, A Day with HIV. I really liked the idea, so I took part.”
For his picture, Rex chose a place that was special to him, the garden of his cozy home in the middle of the former West German capital. “This always was a kind of paradise for me, especially in the time of the pandemic,” he said. He was very intentional about the time he took his photo—8:30 a.m. Tweeting out the photo soon afterward, because of the six-hour time difference between Bonn and the American east coast, it would be one of the first pictures to be seen in the U.S.
“That was the idea behind the time,” he said.
Rex’s photo was seen by many of his acquaintances—including the president of the German adult education association where he works, Annegret Kramp-Karrenbauer, who until late last year had also been the German minister of defense. She sent him a warmly worded direct message of support.
“All day I was showing everybody this direct message,” he said. “That really was a breakthrough for me.”
Rex acknowledged he had some privilege in getting to where he is now. “I’m a white, middle class gay man, so I had a very positive bubble around me,” he said. “And I had the help of friends. I built my own network. I also had therapy. It lasted one year, from the diagnosis to the moment when I could speak openly. It was a long journey, but a very good journey.”
To watch highlights of Resilience—Stories of A Day with HIV, go to positivelyaware.com/webinars. Some quotes in this article have been lightly edited for content.