On Sept. 21, Angela Motsusi, a nurse in Johannesburg, South Africa, who does quality control for area HIV-testing sites—and who also has been living with HIV herself since 2011—tapped out one of her many Facebook posts intending to chip away at the stigma of living with the virus, which continues to exist in South Africa, as it does in the U.S. and many other countries.
She posted a selfie with the text, “Name: Angie; Age: 32; Children: Yes; Married: Engaged to be; HIV status: Positive; ARVs: Yes. Let’s go!” And she topped it with a hashtag she whipped up on the spot: “#NormalizingHIVChallenge.”
Name : Angie
Age : 32
Children : Yes
Married : Engaged to be
HIV status: Positive
ARVs : Yes
Let's go!Posted by Angela Motsusi on Sunday, September 20, 2020
“To me,” said Motsusi via a Facebook video chat with TheBody, “it was one of those educational, inspirational posts that I randomly put on Facebook to normalize HIV, because whenever I have the chance, I talk about the importance of that.” In South Africa, she said, where about 20% of people live with HIV—the highest rate in the world—“people will talk about having diabetes, hypertension, even their COVID status, but with HIV, we still have to hide, be afraid, and whisper about it. I’ve always advocated treating it like a normal, chronic, manageable illness.”
Little did she know she was about to spark a global social-media phenomenon among people living with HIV (plwHIV). Within days of her initial post, hundreds—if not thousands—of plwHIV were accepting Motsusi’s challenge, posting their own selfies alongside their HIV diagnosis dates and treatment regimens from South Africa, Zimbabwe, and Lesotho to Israel to Europe to the U.S. and Latin America and beyond. According to a quick review from TheBody, most such posts seem to have been greeted almost unanimously positively, some of them racking up likes, hearts, and encouraging comments in the thousands. It well may be the biggest global social-media campaign started by plwHIV since Bruce Richman started the “U=U” (Undetectable = Untransmittable) campaign in 2016.
Granted, many of the folks posting were already publicly out with their HIV status. “My first public disclosure was in The Chicago Tribune in 1986,” said Tez Anderson of California, founder of the online and IRL support network Let’s Kick ASS (AIDS Survivor Syndrome). And he admits that the reaction on Facebook to his #NormalizingHIVChallenge “has been ‘ho-hum.’” But he still embraced it as his latest example of living his status openly, “which has only been incredible, rewarding, and humbling. I’ve had experiences and met people I would not have, were I not openly, loudly HIV positive.”
For others, accepting the challenge was a bigger, braver step. “I decided to do the challenge because ... I’ve been open with my status, but not ... every day and all the time,” said Consolata Opiyo, of Nairobi, Kenya. “Most of my Facebook posts are related to HIV, but I’ve never mentioned directly that I had HIV. I recently lost a friend to suicide due to the HIV stigma she went through in college. I decided that I needed to do more than I was already doing.”
Opiyo said that it was important for her to take on the challenge in a lighthearted way, “so that everyone could only see this happy and bubbly person who is gorgeous, curvy, HIV positive, and slaying in life. I felt that if many young people living with HIV, especially women, saw such positivity, they would emulate it and embrace their own positive status while fighting stigma.”
In the tiny kingdom of Lesotho, tucked into South Africa, Tsepang Maboee found that after she posted her status under the challenge, she received more than 2,000 hearts and likes, alongside such comments as, “You are changing the lives of many,” and, “You might not even know it ... but you are giving out a lot of emotional support to tons of silent individuals out there.”
In Cape Town, South Africa, Khanya Mrwebi reported that reaction to her post was “overwhelmingly positive. People were so supportive, and some got inspired by it and disclosed their status to me. The only people who knew about my status” prior to her post “were my mom, sisters, and close friends.” She said she was particularly encouraged to see so many young people like herself sharing their status.
And in Long Beach, California, Oriel Angelio Briguela, a gay Filipino-American living with HIV, used the hashtag on National Coming Out Day to post a high-drama video of him lip-syncing to Mariah Carey’s defiant anthem “Can’t Take That Away.” In the video, he slowly wipes from his face and chest Sharpie’d words including “sick,” “cursed,” and “dying,” and replaces them with the words “HIV+,” “loving,” “kind,” “fierce,” and “bakla” (which means gay in the Filipino language of Tagalog).
Experts say that Motsusi has sparked a powerful campaign. “These actions are part of destigmatizing HIV,” said Perry Halkitis, Ph.D., an openly longtime HIV-positive dean and professor at Rutgers School of Public Health in New Jersey and director of the Center for Health, Identity, Behavior, and Prevention Studies. “This form of empowerment also counters the psychosocial stressors faced by so many people living with HIV. Many in our society who are less informed continue to react to HIV like it’s 1985. We need societal views to advance, and this is a critical step.”
Said HIV longtime survivor Sean Strub, founder of POZ magazine and the Sero Project, which works to strike down outdated laws that criminalize plwHIV for having sex without disclosing their status (even if they’re undetectable and hence untransmittable): “There have been billions of dollars spent on anti-stigma campaigns that focus on trying to educate, enlighten, or change the mind of stigmatizers. Much of that was a waste of money. We are more effective at reducing stigma when we focus on empowering the stigmatized rather than worrying about the stigmatizers. Haters are gonna hate ... but when we feel supported and have a community, we step out of shame rather than waiting for others to eliminate it.”
“The #NormalizingHIVChallenge campaign,” he went on to say, “is powerful because it is about individuals living with HIV stepping forward, into public view, celebrating their success and survival. Sharing our HIV status enables us to own it without shame.”
As for Motsusi, she said that a few days after her hashtag went viral, she was contacted by the Global Network of People Living With HIV with a shout-out for starting the campaign. “Then I knew something was happening here,” she said.
And that, she added, feels “amazing. We’re a step closer to what I wanted to achieve.” Now, she said, she would like the campaign to continue spreading not just globally, but in her own country. “Surprisingly, a lot of people here are not aware of U=U, so we’re going into communities with a big campaign in December around that. We’re still very much backwards. I’d like more organizations in South Africa to show interest” in the hashtag campaign. “If more people can change their mindsets around HIV, that would make me very happy.”