Social Justice Sheroes

My sweethearts… My loves… Boo… Bae… Elders… Legends… Heroes. The genuine affection this group of new advocates has for each other, and for the women whose work has paved their way, is clear in the language they use to refer to one another. Forged at community conferences and grown on social media, their connections run deeper than shared HIV status alone. To them, the HIV community is a family—and they each have their own distinctive ways of fighting for their family’s health and freedom. Get to know them and their work; chances are you will be hearing about them for a while.

“I acquired HIV and wasn’t offered a test because I didn’t fit a demographic,” she said. “How many other people don’t know that they need to ask?” LaDawn was eager to spread the word that anyone could acquire HIV—and live, laugh, and love following their diagnosis. But her partner at the time discouraged her from speaking up, for fear that people would guess his HIV status if they knew hers. She kept silent out of respect for him. “I told him, ‘I feel like I’m not being myself, not being able to talk about this,’” she recalled.

Once the two went their separate ways, LaDawn was free to jump into advocacy. She began sharing her story on social media; she also became part of the Southeastern Michigan HIV/AIDS Council (SEMHAC), after meeting Evelyn Postell-Franklin, one of SEMHAC’s co-chairs and a longtime advocate, at a support group. “Even when she first met me she was like, ‘I see so much for you!’” LaDawn remembered. “I call her the mother of all of us. …Some of these [programs] that we are part of now, she helped form.”

Postell-Franklin would encourage LaDawn to attend events and sit in on meetings to expand her knowledge. “It was just a pleasure to meet somebody like LaDawn who had all this life and spunk and spark and excitement in her,” she said. LaDawn soon moved into her current role as a linkage to care specialist at UNIFIED, a regional multi-service center. “UNIFIED has given me wonderful opportunities to be on the news, in the newspaper …places I could never imagine being,” said LaDawn. She has connected and shared resources with other advocates at national gatherings, and engaged in federal advocacy as part of Positive Women’s Network-USA (PWN)’s Policy Fellows program.

She is raising two advocates, as well: Her older son, who is hearing impaired, shares HIV information with his friends in sign language. Her youngest, who just turned 12, corrects teachers who get things wrong about HIV and has become an ally to LGBTQ kids in his middle school. “He’s like, ‘Mom, you taught us not to judge people,’” LaDawn said with pride. “He is not afraid to stand up for you!”

LaDawn talked about being honored to meet and get to know women like Postell-Franklin who have been involved in HIV advocacy for decades. “[They paved the] way for us ,” she said, “we’re just putting a newer spin on it.” In her local area, LaDawn’s unique “spin” has not always been received warmly. “[Older advocates were] like, ‘This girl is wild … Sexy and HIV don’t go together!’” she remembered. “We had to get to know each other.” Said LaDawn of Postell-Franklin: “She helped people understand me.”

To Postell-Franklin, telling LaDawn and others to simmer down was “a way to keep a lot of our voices muted. I just didn’t want to be a part of that.

“You can just see her beginning to shine; she is really becoming a polished advocate for women in our community,” Postell-Franklin observed. “To bring another one on is a blessing; and honestly, I would like some rest!”

As a linkage to care specialist, one of the key messages LaDawn uses to support her clients’ staying connected to care is U=U: the simple, powerful fact that a person with HIV and an undetectable viral load is unable to transmit HIV through sex. She also names U=U as one of the biggest differences between her generation and that of her mentors. “When you do get diagnosed, and you go through the tears, that’s the next thing you learn: the good outcome,” she said. “That’s what did it for our generation.

“For them not to have that, I can imagine the stigma that they went through. I can understand why they looked at me like, ‘Sexy and HIV in the same sentence?!’

“They were watching their friends die, and we’re helping our friends continue to live.”

"HIV is urgent, but I don’t see the point in us working until burnout,” she said. “When we get to zero, what are we gonna do? Funding gets pulled, the lights go out, and we’re all sitting there with our peer navigation certificates.

“When all this is over [we’ll ask ourselves]: Did you even get to cash in any of that PTO [personal time off]? Did you even get to go home for the holidays? Do you even have sex? … You got T cells just sitting there!”

A huge concern for Tiffany, in nearly two years in the HIV advocacy community, has been whether HIV advocates are enjoying the lives that they are fighting for. For Tiffany, the goal is liberation, and pleasure must be part of it.

The 2017 U.S. Conference on AIDS (USCA) in Washington, D.C., was a watershed moment for Tiffany. After living with HIV all her life, it was her first conference. One of the providers at the clinic she attends had encouraged her to apply for USCA’s Youth Initiative Scholars program.

“I was having a really difficult time, and I think a lot of my clinic people could see that,” she remembered. “I was a grown woman who didn’t know how to date or make friends or keep relationships …or cope with my diagnosis, or with life in general. It was kind of boiling over.”

She had gone to college for social work; while in school, “all my topics were on HIV and I kept on flunking all of them. … I was afraid that if I acted too passionately or I was too correct that they could tell.”

When she stepped into the conference hotel, her life shifted.

“Picture dropping a goldfish back in the water after taking it out,” she said. She was surrounded by mostly black and brown people who embraced, challenged, and believed in her. “Being around people who understand trauma or are trying to work through trauma is such a soothing, peaceful space to be in,” she commented. “After that, I was hooked.”

Tiffany attended numerous events that first year; the following year, when the same opportunities presented themselves, she encouraged other young advocates to apply. “Other folks need that kind of space, too.”

Tiffany refers to the legion of older black women advocates with whom she has connected as her “Board.” “They keep me from getting arrested by accident at these conferences,” she joked. She also spoke of how proud she is to know them; and they reflect back to her the immense value of what she brings to the community around her.

“Tiffany affirms everything and everybody,” said Kamaria Laffrey, who facilitated the 2017 Youth Initiative Scholars program. In her characteristic exuberant way, Tiffany informed Laffrey that she was going to be Tiffany’s mentor. Laffrey couldn’t have been happier.

“She is so bold, and brave, and completely unapologetic in being herself,” Laffrey said. “She knows the world that she wants to live in; she already operates in the change she is looking for.”

In Tiffany’s world, black and brown advocates living with HIV do not just work hard, but also celebrate that work by enjoying more leisure, more fun, and yes, more sex. Tiffany rarely misses an opportunity to point out connections between pleasure, healing, sex, and liberation.

“I think sex is so big that we downplay it …sexuality overall, and how powerful it is,” Tiffany said. “When are we [as advocates] going to sit down and decide: What is our stance on sex and sexuality? Are we going to accept that we love sex?”

On social media, at speaking engagements, and in her writings for TheBody.com, she is very open about enjoying as much sex as possible. She is also not naïve about the potential consequences of such a stance in a society that criminalizes the sexuality of people with HIV, sharing in a May 2018 opinion piece that she makes her sex partners sign a form indicating that she disclosed.

“That’s a conversation that I feel we don’t have openly,” Laffrey added. “We may have our little groups where we meet up and huddle and talk about what we enjoy, but I don’t feel there is a platform of sexual freedom when it comes to living with HIV.”

“If we’re not talking out loud about our scars and the shit that we go through, we are never going to heal.” Tiffany is all about bringing about a culture shift in which black and brown advocates are more open about their pleasure as well as their struggles—and she models that shift in herself. “I have people hit me up all the time and say ‘I really love that you’re so blunt,’ ” she said. “It’s not that I’m blunt; I just don’t put on the ‘white filters’ anymore”—referring to the ways people of color are often expected to avoid topics like race for the sake of white people’s comfort.

“If that disrupts someone’s day, I’m sorry; but that’s not why I take these pills every day. That’s not why I survived an epidemic.”

Masonia had envisioned becoming an advocate, though she never thought it would be because she herself was living wih a health condition. A pharmacy technician by trade, she had compassion for her clients living with HIV; after her diagnosis in 2010, she felt compelled to share her own status. She tentatively found ways to connect: “I would disclose to them by saying that I take the same medications they do,” she remembered.

Then, in early 2012, she found out via Facebook that a longtime school friend who was living with HIV had passed away. “If he had known that he wasn’t in it by himself, maybe he would still be living.”

Masonia began researching HIV, and learned of the high rates of HIV in Atlanta and across the South.

“Everyone was either complacent about it, or at a standstill where their only approach was ‘Let’s get tested,’ and medicine,” she noticed. “Many of us in the community don’t realize the reason they are testing is because there’s a high rate in those areas.”

By March of that year, Masonia had her first speaking engagement, at Spelman College, and told the first of numerous rooms full of young people that she was living with HIV. She decided to start speaking up because “I would rather others be uncomfortable because I am public with my status than for them to ever make me feel ashamed and uncomfortable with it.”

She also began attending Ryan White Planning Council meetings, and got involved in her state’s planning group. Her reach eventually expanded to national advocacy. She was often the only young person, or the only mother, or the only person living with HIV, in rooms where decisions were being made that would impact the lives of those like her.

“I would listen to what was not being said that, if I said it, my friends who would never sit in these rooms would feel the change and be impacted by it.” She would point out gaps and make recommendations based on her experience as a young person living with HIV—and a mom who had gone through prenatal care and given birth to an HIV-negative daughter. “Whatever was lacking for me that I could not find, I would speak up on those things,” she said.

By her side along the way has been Christopher Ervin, whom she met through a peer counselor. He urged her to take that first speaking engagement at Spelman—at an event he planned while working at Aniz, Inc., serving women living with HIV. Ervin has been her mentor ever since.

“I have always tried to couch all the work she has done centered around the person she is and what she wants to do, and she just happens to be HIV-positive—instead of all her work being because she is HIV-positive,” Ervin said.

“I have a lot of different mentors for different things, depending on what people are good at,” Masonia said. “This mentor guides me like a parent in the direction I am trying to go.”

Nowadays, that direction is toward fostering ongoing support for women regardless of HIV status. She facilitates a private online support group for U.S. women of color living with HIV, and envisions building what she calls “She’s Positive Network,” a sisterhood of women of any HIV status who pledge to support women living with HIV.

“Most of my friends are HIV-negative; they support me and they tear down stigma all the time,” she said. One goal of the network is to cultivate that support on a larger scale, and connect women who are doing it. She and others have already begun using the hashtag #shespositive to tag acts of advocacy on behalf of women living with HIV.

“The thing that I’m enjoying most is seeing her, whether she realizes or not, starting to mentor other people,” Ervin commented.

Masonia is intent on learning from the success, or failure, of other initiatives. For her, there is a gap that needs to be bridged, where newer and more seasoned advocates share what has worked in advocacy and community organizing, and what has not. As Masonia puts it: “We don’t know what they don’t know.”

“HIV is just one of the truths,” Wanona said. “It could be homelessness, or single motherhood …I just want people to learn how to embrace the situations that they endure in life.”

When Wanona shared her HIV diagnosis openly for the first time, via Facebook Live video, she began her passionate proclamation with, “I’m making this video today to expose my truth.”

“I am just an outspoken individual,” said Wanona, when asked what led her to be public about living with HIV. She was pregnant with her fourth child when she tested positive in November 2016. In August 2017, she went live. She acknowledges that her awareness of HIV at the time was minimal; before she made the video, she felt she was “hiding within.” She also made the video to head off any rumors or negative attitudes about her diagnosis.

The reach of social media has raised the bar on a person’s ability to quickly, widely, and indelibly inform a massive number of community members of their experience. Wanona’s post spread like wildfire, eventually reaching thousands of viewers.

But, as Masonia Traylor noted, “Once you go public, you can’t take it back.” When Wanona made her video, someone tagged Masonia on the live stream, thinking Wanona might need help that Masonia could offer.

“I am not familiar with ‘going viral,’ but I do know the pressures that come along with being public,” Masonia said, alluding to her involvement in media pieces for CNN on cable TV, and in Time and Essence magazines, among others. “You need all the support that you can get.”

According to Wanona, she has found that support—not only from family and friends, whom she calls out by name and thanks in her video for their unconditional love. In the wake of the video, the HIV community emerged to embrace her.

“Everyone is so welcoming,” she marveled. “I feel really well connected.”

Organizations began reaching out to her to participate in events and campaigns. Wanona and her mother were part of a beautiful visual storytelling campaign, HIV in Real Life (hivinreallife.wisconsin.gov/real-stories/wanona), through the Wisconsin Department of Health Services, in their native Milwaukee. Wanona became part of the Community Advisory Board of The Well Project, an online resource for women living with HIV, connecting with numerous learning opportunities, as well as an international community of women.

“I give The Well Project so much love, support, and credit,” she said. “They took me right under their wings.”

Participating in conferences and trainings helped her become more informed about HIV so that she could educate others, as a speaker as well as an avid social media influencer with more than 50,000 followers. “[That’s] where I’m able to spread the knowledge that I obtain from trainings or conferences or events to those that are a little bit unreachable to organizations,” she explained.

Wanona has also found that support in Masonia, who was surprised when Wanona identified her as a key mentor. In June 2018, Wanona made a leap of faith and moved her family to Atlanta—a city where she had never been, and knew almost no one.

“I wanted a new beginning,” she said of her adventure. “I knew that HIV was high there, and I figured there was a lot of work that I could help with.”

Masonia checks in regularly with Wanona now that she is in town. “As a young African American woman with children …I wanted to just be there for her in any way that I could,” said Masonia. “I love what she is trying to do; I am hoping that she can make her mark right here in Atlanta.

“Some people look at this [advocacy] arena as being competitive. The way I see it, it’s more like a family.”