Message Out of the Bottle
Outspoken HIV activist Wanda Brendle-Moss urges people living with HIV to live out loud
by Alina Oswald
Photographed Exclusively for A&U by Gianna Haley
Everybody knows Wanda! I personally connected with her on social media. Inspired by her posts, I decided to go ahead and call her, to find out more about her story of becoming the passionate HIV activist known and respected in the virtual, and also real world.
“I’m originally born in Winston-Salem, I still live in Winston-Salem, and I will probably die in Winston-Salem,” Wanda Brendle-Moss chuckles. A registered nurse by profession, now retired, Wanda seems to have taken care of people her entire life.
“I graduated from nursing school in 1981,” she mentions, recalling the first time she came face to face with what turned out to be HIV. “That’s when there was this thing going around. Then we just got the name for it, and the name was HIV. I was one of the nurses that never ever refused to care for [patients with HIV] who were coming in. And in all honesty, most of them were men.” She pauses for a moment, and then she adds, “My belief is that any time a man has a [sexually] communicable disease, there’s going to be women who have the same disease. It’s just the way it works. But sadly our society did not accept that belief.”
Twenty years later, Wanda found herself in a marriage that was about to fall apart. Her husband at the time turned out not to be a knight in shining armor after all; quite the contrary. “During the last little bit of our relationship I had started losing weight,” she recalls. “I was having a lot of thrush in my mouth, candidiasis [which usually is a tell-tale sign that the virus is present in the human body]. But still, it didn’t click in my brain that I could be susceptible to HIV [infection]. Propaganda was saying that [HIV] is linked to gay men and prostitutes.”
In 2002, following her son’s advice, she went to a local women’s shelter. She also went to a walk-in clinic to see a doctor. “I was very fortunate that I got a doctor who was a true human being,” she says. “He came in and put his hand on my knee, and said, ‘Let’s do a test.’ And in that moment I knew that I would be diagnosed with HIV.”
Not long after her doctor’s visit she got a phone call from the walk-in clinic asking her to come in. The doctor also came in, on his day off. There was also a social worker in the room. Wanda remembers that someone handed her a piece of paper and asked her to sign it. The paper said that she would not do any harm to herself. To this day she believes that form had some role in saving her life, at least in part.
She began what she calls her “last relationship” a couple of years later, but that did not end well for Wanda. She found herself “one minute away from living on the streets,” she says. “I called AIDS Care Services and came into the family of AIDS Care Services here in Winston-Salem.” While still devastated by the breakup, she also needed to have a purpose; therefore, she started volunteering in the food pantry. That gave her self-confidence.
From then on, she started living very openly and showing her true colors in terms of her HIV status. After all, she declares, “I am a white heterosexual woman, I might be white on the outside, but on the inside I am a rainbow.”
Over the years she became the activist—and cyber-activist—we know today. She also realized maybe
from the start that outside the big cities and their bright lights, outside cities often associated with the epidemic (like New York, L.A., or San Francisco), in small towns of America, there are different issues surrounding HIV and AIDS. She realized that although HIV is alive and well in Smalltown America, in particular inside the Bible Belt, there’s an ongoing shame and stigma associated with the virus. Nobody is willing to bring it out into the open. Nobody would talk or come out about being HIV-positive. So Wanda felt compelled to become a voice, perhaps the only or at least thee strongest voice in her community, in her state.
But in order to do that, in particular, in order to tap into an HIV community outside Winston-Salem and North Carolina, she first needed a computer. The problem was that she had not much money to afford to buy one. And so, she reached out to a few individuals, and explained her financial situation, as well as her goals. And in turn they rewarded her bravery and passion for what she was ready to do by helping her get not only a computer, but also some other office equipment.
It didn’t take long for people in the local HIV community to hear about Wanda. The Adam Foundation, a local AIDS nonprofit founded in 1990 with (as mentioned on its website) “the primary goal to provide funds for those in need in the LGBT community…specifically members who were directly affected by HIV/AIDS,” an organization which, to this day, “remains steadfast in its commitment to our healthcare-based legacy,” invited her to speak at one of its annual festivals and to share a little bit about her story.
After the speech, she noticed that a lot of white women in the audience had tears in their eyes. She found out that it was because, before hearing her story, they had no idea that they could be at risk of contracting the virus. That’s because nobody talked about white women, who often have more resources than other women, as being at risk of contracting HIV.
“My theory is that a lot of Caucasian women come from privilege,” Wanda explains, speaking about disparities between “women of color and women of no color.” She adds, “Privilege affords them to pay for medication outside their insurance and not to report their status to the CDC. I have preached that widely. And I have gained some momentum in that.”
Everybody’s journey is different, in particular when it comes to HIV. “We have to start talking about HIV and call it what it is—Human Immunodeficiency Virus. The key word here is ‘Human.’” She points out that many individuals involved in the fight to end HIV agree that in order to make that happen we first have to deal with the stigma surrounding the virus.
In 2014 Wanda went to her first AIDSWatch conference. She basically went on faith, not knowing where she was going to stay, sleep, or eat during the event. Later that year she attended an HIV Day event in Winston-Salem. One of the individuals at that event remembered Wanda from AIDSWatch. “I was so moved that you came on faith,” she remembers him saying. “But you were determined to make a difference.” That statement validated her work, yet again, and also that being honest with people did, indeed, make a difference.
And Wanda Brendle-Moss has been making a difference. She is now on the Board of Directors of the AIDS Drug Assistant Program Advocacy Association. “Since its inception in 2007,” says Brandon M. Macsata, CEO of ADAP Advocacy Association, “the [organization] has promoted a patient-centric approach to its governance, programmatic activities and coalition building. We don’t simply talk the talk, but more importantly, we walk the walk evidenced by the fact that a majority of our board has to be people living with HIV/AIDS. All of our programs—including our flagship ADAP Directory—are designed from the patient perspective.”
Wanda first came to ADAP in 2013. She was the only North Carolinian to attend the ADAP event, and so she was asked to bring in more people, which she did, two years in a row. One day she received a phone call from Brandon Macsata, and she thought she’d done something wrong. Instead, she recalls him asking, “He said, ‘Wanda, how would you feel about being on our board of directors?’ and I said ‘I would be honored to be on your board,’ and then he kind of chuckled and said, ‘That’s a good thing you said yes, because we voted you in last night.’”
Wanda is the first to admit that one has to be ready to become an HIV activist. Many young individuals, women in particular, living with the virus want to become activists and public speakers like Wanda, and thus ask for her advice. “There’s a process,” she tells them. “Before you [become ready to] do what I do, you have to believe in yourself. Because if you go and speak before a group [of people], and get that question that bothers you, you will not be ready for it if you’re newly diagnosed [with HIV].” She reiterates, “Newly diagnosed persons are not ready to be public speakers until they accept the diagnosis. And [they] can’t play the blame game!”
Wanda is adamant that HIV is not a crime. “We are all responsible for our own wellbeing,” she says. “If you’re shooting drugs, no judgment, but don’t share your works [and use clean needles and works],” she advises. And despite the fact that nowadays PrEP is available, she still urges that it is important to use condoms. That’s because, if taken as directed PrEP is effective in preventing HIV, but it doesn’t prevent any other STIs. “C’mon, get real. You still need a condom,” she reiterates.
Wanda Brendle-Moss is a loud activist voice, in some cases maybe the loudest voice, especially in North Carolina. She’s fearless, unafraid to tell her HIV story in hopes that it will help others.
When I ask what motivates her to be an activist and do everything that she does, she answers with excitement in her voice, “Do I get a high because somebody [says] ‘Go get Wanda; Wanda will make things happen’? My old heart goes kaboom-kaboom [when I hear that].” She continues, “But [most importantly] if what I do makes one person think before they get into any of the [so-called] risky behaviors—which means just people being people—if I plant a seed [to make them think before engaging in such behaviors] then I’ve done my job.”
There were events in North Carolina where she showed up wearing buttons proclaiming that she has HIV and she’s living in the community. She was told not to wear such signs, not to draw unintended attention to herself and others around her. But she wasn’t intimidated or afraid to go public about her HIV status. When I ask why she’s not hesitant to do so, she answers, “My life has had so many twists and turns. HIV ain’t nothing. It is a virus. It is a preventable, treatable virus. There’s nothing in the world to make you ashamed of HIV. Humans make you ashamed of HIV.” She goes on to say, “[Living with HIV] is my reality. Just because you’re sitting or standing beside me that’s not outing you as an HIV-positive person. Please do not try to put me in a bottle!”
Wanda Brendle-Moss lives out loud with HIV and encourages others to do the same. “Please have the courage within yourself to live out loud,” she says, “because once you take that step to living out loud and accept that this is just a virus—a treatable, preventable virus—only then you will find true freedom.”
Learn more about ADAP by visiting www.adapadvocacyassociation.org. Find out more about Wanda Brendle-Moss by contacting her online at https://www.facebook.com/WandaBrendleMoss.
To contact photographer Gianna Haley, e-mail her at gianna.haley@gmail.com.
Alina Oswald is Arts Editor of A&U.