Poet & AIDS advocate Mary Bowman raises awareness about individuals living with perinatal HIV infection and discusses her journey of healing and the power of self-care
by Chael Needle
Photographed Exclusively for A&U by Sean Black
The teacher had been talking with the students about Ryan White, the Indiana youth, infected with HIV through blood treatment for his hemophilia, who had been stigmatized and discriminated against by parents and teachers at his school because of their AIDSphobia and unwillingness to learn the facts about HIV transmission. He was banned from school. Neighbors cancelled their subscriptions along his paper route. Students were withdrawn from his school by their parents after a successful court battle allowed him to return. Ryan’s mother, Jeanne White Ginder, has said, “It was really bad. People were really cruel; people said that he had to be gay, that he had to have done something bad or wrong, or he wouldn’t have had it. It was God’s punishment….”
By the time Ryan died of AIDS-related causes in 1990, just shy of his high school graduation, he had become a teenaged activist, even gaining the ear of the Reagans. By the time Mary’s teacher had mentioned him, about seven or eight years after his death, Ryan had long since been the subject of a made-for-TV movie and had become an inspiration for millions everywhere; his legacy of advocacy has lived on, perhaps most prominently through a federal HIV/AIDS care program that bears his name.
Although fourth-grader Mary had been living with HIV her entire life, diagnosed six months after her birth, she had only been recently told of her serostatus, by accident, at a doctor’s visit. During triage, a nurse had asked her how long she had been HIV-positive. Mary didn’t know the answer. “I had never heard that word before; all I knew was: I take medicine because I have a blood condition. That’s what my family called it….”
When the teacher mentioned White, a few days after this doctor’s visit, Mary became excited. “I was like, ‘Oh, my gosh, there was a kid who has HIV and he speaks out,’” says Bowman. Afterwards, her classmates started to shun her, and Mary became discouraged. She faced a policy of silence within her own home, too. The woman she calls “Mom,” the wife of her father, who had taken her in, had not wanted her to disclose. “My parents didn’t want me to tell my secret. It was like, ‘You have to keep certain things private in our home.’ That really just closed me up…I didn’t feel like I was good enough.” Suddenly, Mary became burdened under the weight of all those negative feelings about herself. Her battle with internalized stigma had begun. Mental health issues haunted her through high school, though later she worked through them.
Of living with HIV, and putting a name to the condition at eight or nine, she says: “I didn’t know it was a bad thing until I disclosed. I mean, it’s not a bad thing, but I didn’t know that the world thought it was a bad thing, so I disclosed my status.”
Mary’s mother, Franci Lonece Smothers, who went by Lonece, died of AIDS-related causes in 1992, three years after Mary’s birth in 1988. Mary has written about this mother she did not know in “Dandelions,” a poem in her collection titled Lotus, which won the National Underground Spokenword Poetry Awards’ Book of the Year prize and was published under the name, Marie Elaine.
“My mother was a dandelion in the midst of roses / Ignorant of her purpose she uprooted her soul and unknowingly left herself for dead / It has been said that my mother when above the influence transmuted broken hearts into smiles / All the while dying on the inside / AIDS didn’t kill my mother / It put her at rest….”
On the page, as this excerpt shows, the power of Bowman’s words sparks thoughts and feelings—the heat of melancholy, the heat of empathy; on the stage, the power of her words makes you want to dip your torch in hers and run around like an Olympic bearer, rallying others to join in the celebration and the critique.
If you have not had the pleasure of hearing her at Spit Dat or Busboys & Poets, two popular spoken-word sites in D.C., you can seek out her spoken-word performances on YouTube. You can sense her deep connection with the audience as well as her brilliance, as she fits words together and finishes a puzzle you may have only started. Spoken word poetry demands the embodied self, and Bowman uses this convention to not only touch on current events but also to engage listeners as a woman living with HIV. Each word spoken, angry or joyous, is an invitation to heal.
In “I Know What HIV Looks Like,” she expands the space of positive identity to include herself and others who have been disappeared by stereotype or misperception: “It was predicted that she would breathe her last breath before 5 / But now / Here she stands 5 foot 9 / 15 years after her expected demise… / She can’t allow people to go on and think / That HIV only looks like / Skinny bodies, pale skin, open sores, and baby thin hair / She can’t help but start a movement that does more than just wear red t-shirts on December 1st / No matter how much it hurts….”
Raised in Clinton, Maryland, a stone’s throw from D.C., where she now lives with her wife and stepson, Mary found an outlet for her bottled-up feelings one day in ninth-grade English class.
Her impetus to continue writing is sourced, in part, in her early home life, where the approach of keeping private her diagnosis and the circumstances of the death of her mother became more of a hindrance than a help. With poetry, she enjoyed being able to express all that was not supposed to be talked about. “Writing just freed me,” Bowman shares, “and I could just talk about anything I wanted to without consequence so that’s really why I kept writing.”
Her creativity was further nurtured in a high school poetry club called BASU Poetry, and watching spoken-word performances on HBO’s Def Poetry Jam on television helped to introduce her to the genre at which she would excel. Graduating in 2006, she did not step up to Spit Dat’s open-mike stage until the end of 2008.
Although Bowman considers poetry her main medium, she has recorded an album of music called Love B.O.A.T.S. (Based on a True Story) and even dabbled in photography thanks to the Through Positive Eyes project, which invites individuals living with HIV/AIDS to document their realities with cameras. However, she is going to leave photography to the photographers, she relates with a laugh.
As for her creative process, Bowman eschews staring at the blank page. She cannot compel creativity. Sometimes, she approaches her creative process more formally, like when she composed songs for her album, but even then nothing was forced. She seizes the moment when it comes: “I’m just like, ‘Okay, well, now is the moment to write.’ It usually comes to me through divine inspiration.”
As for mortal inspiration, Bowman quickly responds: “Maya Angelou, I would have to say, is my number-one inspiration, icon, mother spirit, spirit animal, whatever you want to call it! Maya Angelou definitely is one of my biggest, biggest, biggest inspirations.” (She is tickled when I promise to send her the January 2001 A&U issue featuring the Angelou cover story.) She makes a point to mention Lucille Clifton, too, citing the empowering “Won’t You Celebrate With Me” as one of her favorite poems.
She is also inspired by poets in her local community, like Rasheed Copeland, with whom she came up as a poet; Yaya Bey; and Michelle Antoinette, whose poetry name is “Love The Poet.” About Michelle, Bowman says: “Not only her words but her drive and her commitment to art especially inspires me. She’s actually a close friend of mine, so she’s one of the only people in the poetry community that kind of took me under their wing and saw something in me that needed to be nurtured—and took the time out to nurture it.”
Spoken word poetry relies on, or, rather, demands audience interaction. On why the audience is so important, Bowman explains: “Because it’s for them essentially. I learned a couple years ago that I’m not here because of me; I’m here because there’s a greater mission and purpose for my life. And, so, whatever words I’m given to give to people it’s [for them]. I mean, it’s for me first, of course, to do the healing part, but when I take it to the stage it’s for the audience. So that’s very important…because you never know what somebody is going through in the audience. And, so, what I say can make or break a situation and I take that responsibility very seriously.”
Poetry is universal. If you allow yourself to be present, in the moment, you’ll get something out of it.[/pull_quote_center]She continues: “When I first started, I used to spit poetry with my eyes closed; I wouldn’t look at them. I would just spit the poem and try to get through it, but what I worked on was to open my eyes and really talk to people. Sometimes [now] I just go into the crowd and just look at people, literally in their face, while I’m spitting my poetry!” And for those who have dismissed poetry, she wants them to understand that poetry can be fun—and life-enriching. “Poetry is universal. If you allow yourself to be present, in the moment, you’ll get something out of it.”
She has recently taken a break from spoken-word performances, though continues to participate in the community as a host at Busboys.
“Right now I’m working on life,” she says, with a chuckle. But she is serious about this respite, creating for herself a space for self-care. She wants to be careful, too, about planning her next move. “I don’t feel obligated to be something that I’m not ready for yet. You know what I mean?”
Asked if as a creative person she worries about running out of material, she responds: “Yes, I do worry about running out of things to say. That’s kind of where I am now. It’s like, okay, writing ‘Dandelions’ was easy. Not easy in a sense that I’m such a great writer and it was just easy; it was easy in that things just came to me, so I sat there and just let the words flow through me. And, so, now, I’m like, ‘Okay, well, what do I want to say?’ So I’ve been really praying and trying to focus on myself and my spirituality in trying to change the message because, I think, that I have way more to offer than what I’ve already offered, if you understand what I’m trying to say.”
What do I want to say? The question that Bowman poses in her creative process interconnects with her HIV advocacy, which spirals up from her life experiences living with HIV and losing a mother to AIDS.
In “My Mother, My Thought,” Bowman delves into the loss of her mother: “Like it doesn’t hurt cuz it does / Alive is what she was / And will never be again / But she will always be a thought / My thought / My mother.”
Asked if her family kept her mother’s memory alive, Bowman responds: “I think my parents did the best that they could with what they had. My mother was young—I think my mother was twenty-seven or twenty-eight when she passed away, so she was extremely young when she had me—[and] because of her history [with substance use] my parents tried to give me the story as best they could without demonizing her. And, so, the stories that I got weren’t necessarily stories that I probably would have liked to hear.”
She empathizes with her parents. “As I matured I had to realize that, for my parents, it was a sticky situation. My father cheated on his wife and I was a result of his infidelity. So, of course, that’s going to be a touchy subject for my parents anyway….So, yeah, it was kind of a weird situation I grew up in, but it made me better.”
Once older, Mary culled stories from other members of her biological family—her father hadn’t known her mother that well—and she developed a better sense of who her mother was. “She was definitely a person who loved to laugh, loved to have a good time, to dress well,” shares Bowman. These family members filled in the big picture with smaller snapshots. “I remember a couple of months ago I asked my older sister what kind of cigarettes my mother smoked. And she said, ‘Newport shorts, soft pack,’ and I was like, ‘Wow, that’s the same type I like.’ Things like that get me excited because people don’t realize that missing out on those intimate details definitely affects you as a child.”
Bowman feels connected to her mother, and, when I ask if she feels her life is a continuation of her mother’s journey, she agrees with this notion. She does not feel an obligation, however, to represent her; her advocacy and empathy have been an organic evolution. “I feel like this is what I was born to do and that realization came when I was twenty-five,” she says, having realized at the time that she was around the same age as her mother when she gave birth to her. “So that really put things into perspective. What would I do at twenty-five with five children? I don’t know what I would do. I would probably go crazy! But she was able to do the best she could with what she had. And, so that put me in a place where it’s like, ‘Okay, I’m not only doing this for my mother, but I’m doing this for young women who are like my mother and who are maybe in the same shoes that she was in.’ So, it’s more of a responsibility, less of a burden. I don’t feel like I have to, but I feel grateful and I feel honored to be able to go on in her name and carry her name with me wherever I go.”
Bowman, twenty-seven, has carried her mother’s name far in a short time. She has been an ambassador for the U.S. Department of Health’s Office of Women’s Health for its Women and Girls HIV/AIDS Awareness Day, has lent her voice to National Women & Girls HIV/AIDS Awareness Day and National Black HIV/AIDS Awareness Day PSAs, has worked at an HIV/AIDS organization focused on women, and has performed at the XIX International AIDS Conference, AIDSWatch (receiving a Positive Leadership Award from the advocacy initiative in 2015), and DIVAS Simply Singing!, among other events and conferences. She has also facilitated support groups for youth living with HIV and has spoken on panels.
As a young person myself growing up living with HIV, I didn’t have anybody to go to for inspiration. We had support groups at Children’s Hospital and things like that, but it still wasn’t enough.[/pull_quote_center]She has started her own initiative called Purpose Over Entertainment (P.O.E.T.), which utilizes “social media, visual and performing arts to foster holistic conversations regarding those infected and affected by HIV/AIDS in the Greater Washington, D.C., area in an effort to eliminate the stigmas surrounding HIV/AIDS and individuals living with and affected by HIV/AIDS.”
“What prompted me was the need for young people to be invited into the space of HIV prevention, and, through art and using art as a vehicle, to drive advocacy and awareness to the masses,” Bowman says about her motivation for starting Purpose Over Entertainment. “As a young person myself growing up living with HIV, I didn’t have anybody to go to for inspiration. We had support groups at Children’s Hospital and things like that, but it still wasn’t enough. For instance, I didn’t know what to do in social spaces. I didn’t know what to do when sex conversations came up. I didn’t know how to be a young person living with HIV. And, so, what I wanted to do was teach, or inspire, young people to know that you can be young with HIV and still live a normal, healthy, amazing life. That you don’t have to be ashamed of what you have because it’s not your fault. And I wanted to be a living example….”
When we hear an advocate living with HIV/AIDS, that person is usually an adult, usually someone who contracted HIV as an adult. Not often do we hear from someone who has been perinatally infected—Nkosi Johnson became a positive force for change in his brief life; Jake Glaser is perhaps the most well known advocate. Now a new generation is speaking out; advocates like Paige Rawl and Ashley Murphy have been coming of age and coming to voice. Bowman, too, is committed to advocating for children, youth, and adults living with perinatal HIV infection. According to a 2013 CDC estimate, 9,131 adults and adolescents (ages thirteen and older) in the U.S. are living with HIV acquired through perinatal transmission. Globally, according to 2015 UNAIDS estimates, only seventy-seven percent of women have access to meds that can reduce the risk of mother-to-child transmission; only forty-nine percent of children (fifteen and under) living with HIV have accessed antiretroviral therapy; and 400 children become infected with HIV every day.
What does the world not understand about individuals living with perinatal HIV infection here at home? Bowman responds: “I don’t think they recognize us; I don’t think they really realize that we’re still here, which is funny because there’s a documentary [by that name].” Bowman’s friend Grissel Granados, along with John Thompson, released a documentary called We’re Still Here recently.
“When you hear people talk about the epidemic we always hear about the MSM community, white MSM, black MSM, about the women of color, black women. We hear about all these other populations,” says Bowman, adding that perinatally infected individuals are often not recognized as long-term survivors. “We are long term survivors and are probably more valid [as such] because we don’t know anything other than HIV….”
Long-term survivors are often erased from the public consciousness, and even, some say, from the radars of AIDS service organizations. Documentaries revisit the 1980s as if this is only past history, but guess what? Some people are still living that history. Born eight days after the first World AIDS Day, Mary Bowman is part of the now.
“That’s what they don’t realize, that we’ve never known a world without HIV; it’s always been a part of our lives. It’s been with us from diapers through kindergarten, through family members not trying to sit with us or, you know, we’ve got to figure out why we can’t visit certain family members [because] unbeknownst to us these family members have stigmas, so they don’t even realize that they can let us play with their children,” she says, listing more injustices like being rejected by a dentist because of his AIDSphobia.
“We’ve lived through these experiences since birth, through our entire lives. And, so, one, I feel like we have a lot more experience than people really [give us credit for] and, two, our stories are valid, and I don’t think they [are recognized as such]. That’s why I do what I do because I want to create a space for perinatally infected youth and adults to tell their stories because we’re so unrecognized—and that’s not fair.”
Bowman points out that the transition from being a child living with HIV to an adult living with HIV can be a struggle. “Once we leave adolescent care they throw us into the adult care world and we don’t know what the hell to do. And, so, that’s not fair either and, of course, we appreciate the fact that we were so coddled as youths and adolescents—for me, it was Children’s Hospital, everything was a one-stop shop.” Shifting from child-centered care to adult-centered care came as a “shock,” she says. “And, so, I fell out of care. We don’t have programs to walk you through that process and there are so many gaps in the program.
“It’s like, ‘Okay, now you’re an adult, go on along your way,’ when I didn’t know how to find a doctor; I didn’t know how to figure out insurance, like which doctors took my insurance; I didn’t know I needed a gynecologist, or a dentist, or all of these things to make sure that my HIV stays under control….I had to figure it out for myself and that’s not fair.” Adults who are newly diagnosed positive, suggests Bowman, have a much greater chance at being linked to care and staying in care, thanks to navigators. Children who become adults living with HIV often do not have that same type of hands-on support.
Now, as Bowman waits for inspiration to strike again, she has realized that she has to take a step back and focus on self-care. “I realized that I’ve given so much of myself to HIV prevention, and poetry, and I haven’t really given the same amount of energy and love to myself…,” says Bowman. When I mention giving and giving, and then not having anything to give to yourself, she continues, “Right, because then you’ll burn out and then who are you helping when you’re burnt out? Nobody. You’re just giving people exhausted energy and that’s not right because people don’t get healed that way.”
A recent negative experience made her stop and assess the whole system of HIV prevention, organizations fighting AIDS, and her place in it all.
“And, so, now what I’m trying to do is single out a way to impact people in a different way,” Bowman says, mentioning that HIV prevention and care efforts sometimes miss the mark. “I’m not saying that the way that people are fighting against HIV and AIDS is wrong, but I do feel like there has to be a more efficient way to reach the people that people are trying to reach. When I go to these conferences [and other places that are doing outreach], the people who they say they’re trying to reach are never there and [I ask myself], ‘Well, who are you really talking to? Because if you keep preaching to the choir, these people that are outside these walls are not going to get saved.’
“So if I had to say I’m working on anything that’s what I’m working on—getting myself together so that when I come back into the world I can offer something on a higher level and take my message to the next level, and not just try to be conformed.”
Her resistance is relatable. Nobody wants conformity foisted upon them, as a person or an advocate. And conformity probably bristles all but the most traditional poets. Spoken word may at times take up conventional rhyme schemes and regular meters, but its power lies in its flexibility to flow with the particulars of human voices, to adjust, quickly, to the insights bubbling up in one’s heart and the tone of the room. This freedom is why Purpose Over Entertainment follows a business model and is not a nonprofit. “I want to be able to do whatever I need to do to get the message out. I don’t want to be stuck in guidelines or [stifled] because of a particular funder….”
I wondered if she has felt boxed in by what other people might expect her to be: “Mary, the advocate living with HIV” or “Mary, the poet who talks about HIV.” “I have once felt that way. I think now with taking a break and taking a step back I am freeing myself from that feeling because I don’t want to be in a box,” Bowman asserts. “I’m not just Mary the HIV advocate, I’m not just Mary the poet, I’m not just Mary the singer. I’m a lot of other amazing things and, of course, when you touch people, they hold on to you, in that moment. So they want you to be that thing every time they see you and that’s not fair.
[pull_quote_center]So if I had to say I’m working on anything that’s what I’m working on—getting myself together so that when I come back into the world I can offer something on a higher level and take my message to the next level…[/pull_quote_center]“And, so, I’m freeing myself from that. So whether or not people want me to be something or not I don’t care. I’m going to still be whoever I want to be and not feel bound by somebody else’s perception of me.” It’s a bit like a band that’s expected to reproduce a popular album over and over, the same sound, the same feeling. Bowman likes my analogy: “Right, which doesn’t make sense because you grow. It’s unreasonable for you to expect me to stay in 2006 when,” she says, creating a hypothetical, “from 2006 on you’d gotten married, had kids, and your whole mentality has changed but because my album touched you in 2006 every album after that has to be the 2006 feeling. That’s not fair—people grow….”
Self-definition is crucial for surviving and thriving. “Find yourself and make sure you know who you are and don’t be persuaded or moved by anyone else’s opinions because opinions change. So this person may feel some way about you today based on how they feel about themselves, and that’s not fair for you to conform your whole entire life based on someone else’s opinion—and that’s especially true for people living with HIV. The world will tell you, ‘Oh, well, you can’t have sex, or you can’t love anybody, or you can’t have this particular job, or you can’t do this because you’re positive.’
“No, F that. That’s not fair. I can do whatever I want, especially if I’m taking care of myself and I’m keeping my head down and doing everything that I need to do to make sure that I keep other people safe. So I would definitely encourage everybody to find themselves, sit with themselves, and get to know themselves. Take themselves out on a date, like get to know themselves, and really hold true to that and really try hard not to be swayed by other people’s opinions because they don’t matter in real life.”
Truer words were never spoken.
Chael Needle is Managing Editor of A&U. He interviewed Sheryl Lee Ralph for the August 2015 cover story.