Using Art to Educate and Raise Awareness About HIV

In recent years, Monica Johnson, the founder of the 27-year-old HIV community organization HEROES (Helping Everyone Receive Ongoing Effective Support), which is based in Columbia, Louisiana, was often surprised to learn that among people she met, only a few knew even basic current information about HIV. Diagnosed with HIV in 1985, Johnson found that many folks didn’t know that HIV can now be easily managed with medication, that such medication renders people with HIV unable to transmit the virus sexually to others or even that people cannot acquire HIV from casual contact like hugging and kissing.

When she discussed the issue with her friend Tamela King, an art teacher at a local public high school, King said her students “thought the HIV epidemic was over, basically, because nobody talks about it.”

But in fact, the epidemic is far from over, especially in the Deep South, where the rates of new HIV diagnoses are generally the highest in the country and care and services are often sparse, especially in rural areas lacking proper infrastructure.

King recently received a grant from Wake Forest University to combat HIV stigma in the church through art. Working with Johnson, she put out a call for submissions of artwork relating to HIV and held workshops with her students to educate them about the basics of the virus. Johnson and King were so impressed with the art they created that they decided to produce a short book explaining contemporary HIV basics featuring simple, minimal text and an abundance of original artwork made mostly by King and her students.

Courtesy of HEROES

The result is For Lack of Knowledge: An Artistic Experience to End the HIV/AIDS Epidemic, which was published in August. (Click the link to buy the book for $39.99. All proceeds go to help fund the construction of a comprehensive education center that HEROES is looking to build on 5 acres of land it acquired in the area.) The book’s cover features a painting by King of a church, and each page of the book opens with a line of Scripture. “Our target audience for the book was church leaders and churchgoers,” says Johnson, “because that’s where a lot of HIV stigma still is, and in the South, the church is the gatekeeper for the community.”

The book covers many topics, including the difference between HIV and AIDS, the basics of antiretroviral therapy, how to have open conversations about HIV, how folks with HIV can combat internalized stigma, advice on how couples can get tested for HIV together, the importance of using non-stigmatizing language, an explanation of both pre-exposure prophylaxis (PrEP) and post-exposure prophylaxis (PEP), HIV in women and children, and much more.

The book’s colorful paintings have a folksy quality. One of Johnson’s favorites, she says, appears on the pages with information on HIV in young people. Titled The Struggle is Real and painted by Alexis Rider, the image depicts a young Black girl carrying several heavy buckets hanging from a tree branch that weighs down her neck. Rider’s artist statement at the back of the book explains: “The little Black girl symbolizes the unique struggle of being Black and female while trying to navigate a world...that gives you inadequate tools...to manage real-life issues.”

The Struggle is Real by Alexis RiderCourtesy of HEROES

Balancing Act, by My Sherie Johnson, illustrates the section “HIV Does Not Define a Person” and brings awareness to the fact that people with HIV have a lot on their plate and everything they do impacts their health and well-being. Meanwhile, the section titled “Deep South,” which explains that longstanding poverty and health disparities drive higher HIV rates in the Southern states, depicts a painting of a pelican—the state bird of Louisiana—by Dyan King. Of the painting, titled Down South, King says: “The pelican is a symbol of Christ sacrificing himself for humanity. In nature, pelicans value community and teamwork.... I believe that if we follow the pelican and Christ, there are brighter days ahead.”

But Johnson says the image in the book that most moved her took her by surprise: a pencil drawing by Riley Volentine titled Da Boy of Johnson’s beloved son, Vaurice, who was born with HIV and died of AIDS-related causes in 1993. “I was tearful when I saw it,” says Johnson.

Construction of the new HEROES center is budgeted at $6 million. The facility will include offices, a farmer’s market, a gym, classrooms and walking trails. “It’s my field of dreams,” Johnson says. She admitted the fundraising has a long way to go. Fewer than 100 copies of the book sold at the United States Conference on HIV/AIDS in New Orleans in September, due in part to much lower attendance because of Hurricane Francine, which struck New Orleans around that time.

But just in time for the holidays, the book can be ordered via the HEROES website. “It’s full of basic info that everyone needs to know,” says Johnson. People who buy the book can provide feedback using a QR code. “So far, people have told me that it was full of stuff that they didn’t know. That’s why it’s a very important project for us.”