As I sat down for my interview with Deirdre Johnson over Zoom, I instantly felt warmly welcomed into her world. Her radiant smile lit up my screen as I imagine it does in every room she enters. But beneath that plucky exterior linger the lasting effects of some of the darkest times of her life. Despite, or maybe in light of, the hardships she has endured, she’s become stronger and more empowered to do the extraordinary work she is doing today. Now, she says she is happy and living life on her own terms with no apologies.
She calls herself a “Partner in Change.” Johnson defines that as “the person who has your back no matter what as we work together towards changing the narrative of HIV, changing policies, supporting each other, and honestly digging deep to be a part of our communities wanting to end the HIV epidemic.” Like members of the clergy find their call to ministry, Johnson, forty-five, says that after her first opportunity to speak to an HIV 101 class some twenty years ago, she knew this was her destiny. She is an innovative educator and a tireless warrior in the battle to stomp out stigma, health disparities, HIV criminalization, and social injustice. “Most days, I don’t go to bed until five or six in the morning because my ideas are flowing, so I’m still doing,” she admits. “Often there are people that I’m working with who are starting things and I’m helping them to build those things, and I’m still building things myself at the same time.”
Johnson hails from Amelia, Virginia, a small town just outside of Richmond. After her dad retired from the Army, her family settled in Alexandria, Virginia just before Deirdre began high school. With her sights set on becoming a doctor, specifically an OB-GYN to deliver babies, she poured everything into being a model student. She enrolled in AP classes, was elected junior class president, ran track, played basketball, and competed on both the math and debate teams. “I was a nerd,” is how she sums it up.
She enrolled at James Madison University in Harrisonburg, Virginia, with a pre-med major and a minor in psychology. During her sophomore year, she hooked up with a basketball player on campus and ended up getting pregnant. Suddenly, her dreams of a career in medicine were dashed. She dropped out of college and moved in with her parents to support herself and her son. Three years later, she met another man who would change her life forever, and not in a good way. “Kevin was mentally, physically, emotionally, and sexually abusive,” she discloses. On their third date, Johnson saw there was a woman being assaulted by another man and started walking over to help her. Kevin grabbed Johnson and threatened her, “If you help her, you’ll get the same thing.” He took Johnson home that night and raped her——the first incident of many more to come.
“There were beatings for anything; I wasn’t allowed to see my friends. If they came over, I would get a beating for that. One day he beat me so bad in the middle of the street that my parents thought my eye socket was broken.” That was the first time she pressed charges against him. When she did, she discovered he had a rap sheet a mile long, dating back to the time he was thirteen. Then, the other shoe was about to drop. She received a call from her doctor to come in to talk about something he found in her lab work.
As the doctor informed her that she was HIV-positive, Johnson describes that moment “like a train just ran into me. It ran through me and it was still going through me and still coming. It was like a wave of emotions of each of the pieces of that train. My first thought was that I’m going to die because that’s all I had heard in the news and everywhere else.” Then, a week later, she learned she was pregnant with Kevin’s child. The straw that broke the camel’s back and finally angered and emboldened her enough to leave him was catching him with another woman. Looking back now, she says, “I couldn’t understand how I got myself into it and didn’t know how to safely get myself out. I was too scared to tell anyone, I didn’t even know how to begin to tell someone. I was also ashamed and worried that he would cause harm to me and my family, so I remained silent.” Johnson says she still suffers from anxiety, depression, and PTSD as a result of the trauma from that relationship. What she gained from that experience, however, was how to advocate for herself and ultimately how to share her story to help other survivors of intimate partner violence.
When she first started seeing an HIV specialist, Johnson’s case manager became her mentor. He told her, “Deirdre, do not let HIV define you, you define it. And don’t just always surround yourself with HIV. You’re more than just HIV.” Johnson followed in his footsteps and became a case manager in Alexandria, followed by a move to Richmond to become an HIV prevention case manager. Next, she was a facilitator for the SISTA Project (Sistas Informing Sistas on the Topic of AIDS) for over 350 young African-American women. “We would really have connections with these women, especially the younger ones. I got to hear their stories about family members having HIV or AIDS, dying, doing drugs, or even experiencing lovemaking for the first time. “That’s where I found my other niche in advocacy,” she recalls. “It was then I figured out who I was really doing the work for and it was for these young women.”
Soon, her ability to advocate for herself would be put to the test with a baby on the way and the risk of mother-to-child-transmission during childbirth. At her final appointment with the specialist who was prepping her for a C-section delivery, she was taken aback when he said, “Ms. Johnson, your T-cell count is high enough for you to have a vaginal birth.” She replied, “What’s the percentage of passage if I do vaginal?” “Five to eight percent,” he said. “What happens if I do a C-section?” “One to three percent.” “If you had those odds, doctor, which would you choose?” Needless to say, she had the C-section and her healthy, HIV-negative baby she named Xion was born without complications, and a fierce self-advocate came to life along with him.
After the birth of Xion, Johnson took a break from HIV work, but she felt a void in her life not doing HIV advocacy and it was affecting her mental health. Soon it started to impact her physical health as well, and she was not taking her HIV meds. She couldn’t work at all for a few years and had to go out on long-term disability. “I was sitting at home feeling like I’m nothing because I’m not working and I’m only thirty-five. I decided to find out more about what I could do.” She decided to check out Positive Women’s Network (PWN-USA) at the 2018 conference in Myrtle Beach, South Carolina. Being in that room full of strong, kindred spirits for the first time felt “like waiting to exhale, like I could finally breathe.”
Johnson started out at PWN as a volunteer for their State Lead conversation. At the meeting she asked who was representing Virginia, and they turned to her and said, “So do you want to be it?” She’s been in that role ever since. “I always say God didn’t bless me with a sister. PWN is a bunch of sisters that I never knew I needed but can’t live without. Any time women are able to work together to further their communities is a win for everyone. PWN has empowered women all over the country to speak up for gaps in services, change policies and change the narrative of women living with HIV.”
At the conference, Johnson met Tami Haught from the Sero Project, who invited her to join the HIV is Not a Crime conference in Indianapolis to discuss Virginia’s HIV criminalization laws. At that conference, Johnson joined forces with Dr. Cedric Pulliam to co-found Ending Criminalization of HIV and Overincarceration in Virginia (ECHO VA). The organization secured two co-sponsors for a bill that would repeal sections of the Virginia Code that impose penalties, including incarceration, upon anyone who transmits HIV through sex or another means. At press time, SB 1138 passed the Senate and was headed to the Virginia House for a vote. “Our goal at ECHO VA is to create an equitable and equal place for Virginians to live whether they’re living with HIV or not, no matter their race, their creed, their sexuality, their anything, just to be able to be free and live the best quality life that they can live,” Johnson states.
With all the advocacy and education work Johnson does, she points out how essential it is to include those who are not living with HIV in the conversation. Johnson didn’t disclose her status to her five closest friends from high school until after an incident in the hospital as she was about to deliver Xion. As they were taking Johnson back, the anesthesiologist yelled down the hall, “You know you’ve got to be careful, right? She’s got HIV!” It turns out one of Johnson’s other high school classmates was an administrator on the floor handling her paperwork and visited her after delivery to make sure she was okay. At that point, Johnson decided it was time to open up to her old friends. Once she did, they just wanted to know how they could help.
She said to them, “I need for you all to help me because as I educate myself, I will educate you all and you will have to go back to our classmates that are not willing to come and talk to me.” That’s when she started to share more of her daily life. “I want them to know everything that I’m going through so they can see that I’m living and thriving with HIV.” Her family, on the other hand, never wants to talk about it. “Sometimes I think they’re scared to ask me questions and I will just say, ‘Screw it, we’re going to talk about it.’ I want to keep it relevant and fresh for my friends and family so we can start to get rid of the stigmas of what people living with HIV are like and how we act and how we live.”
In 2019, Johnson put the pedal to the metal, literally, in the war on stigma, when she accepted an invitation from her PWN colleague from Colorado, Davina Conner, also known as Pozitively Dee, [A&U, September 2016]. The project, called “Driving Out Stigma” was to travel to as many states in the Deep South hardest hit by HIV. They drove from Colorado to Houston, Dallas, New Orleans for AIDS Walk Louisiana, Baton Rouge, and finished at Morehouse College in Atlanta. There were lots of important conversations about intimate partner violence, trauma, U=U (Undetectable=Untransmittable), and why language matters. “It was amazing to go meet people, talk about HIV, stigma and listen to the stories of the community,” Johnson remarks. “I saw first-hand how HIV is seen in states other than mine. At the core, a lot of people are still scared to talk about HIV.”
Johnson is also a champion for LGBTQ+ rights. In 2020, she took on another role as HIV Coordinator for Equality Federation for the states of Oklahoma, Texas, and Missouri. She did it to support Xion, now nineteen, who identifies as non-binary. “It’s crucial as a parent and also as a partner in the community to bring awareness to black women that it’s important to love your child no matter what.” This position involves HIV advocacy, criminalization work, and grassroots organizing to ensure access to HIV education, testing, prevention, and medical care. She is also excited to be joining the Prevention Access Campaign’s 2021 team of U=U Ambassadors, educating and building the capacity of providers and communities to integrate the U=U message into sexual health communications, advocacy, and clinical practice.
As if she doesn’t have enough on her plate, this woman with the gift of gab created Deidre Speaks, a Facebook live streaming event. “Everybody tells me I talk too much so I created a show to encourage people to take their HIV medication.” Johnson takes her meds live on the show to try to help people avoid medication fatigue. There is a theme song and a special dance, discussions about U=U and other topics while viewers take part in the conversation. “It’s giving people encouragement to keep going,” and her followers have formed a community of their own. “A lot of the people that come on to the show have become friends, so they’ll chat among each other, which is amazing.” Ultimately, Johnson hopes to take the show to her own YouTube channel.
I asked Johnson what motivates her to keep taking on all these different projects. She says getting results is all the motivation she needs. “To see the laws being changed, to see people being able to stand up and be proud of who they are, and not just about HIV but to be excited to be who they are authentically without having shame, fear, or stigma hanging over them.” As for her legacy, she says, “I want my grandkid’s grandkids to look at their great-great-great-grandma and be like, ‘You know what? She was a bad bitch.’ I want to do something and change the world.”
A wise woman once said, “It takes a minute to complete a task, a moment to make a difference to equal a lifetime of good or bad memories. So, make every minute and moment count for a lifetime of great memories.” That woman is Deirdre Johnson. I can’t wait to see what she does with the minutes and moments that lie ahead for her.
For more information about photographer Courtney Ramsey, log on to: clicksbycourtney.com.
Chip Alfred is A&U’s Editor at Large, a public speaker, and a media and public relations consultant based in Philadelphia. Follow Chip on Twitter @ChipAlfred.