In recent years, Monica Johnson, the founder of the HIV community organization HEROES (Helping Everyone Receive Ongoing Effective Support), which is based in Columbia, Louisiana, and marks its 30th anniversary this year, was often surprised to learn that among people she met, only a few had basic, up-to-date information about HIV. Diagnosed with HIV in 1985, Johnson found that many folks didn’t know that HIV can now be managed with medication and that with effective treatment, people with HIV cannot transmit the virus sexually to others. Many people also didn’t know that you cannot get HIV from casual contact, like hugging and kissing.
When Johnson discussed the issue with her friend Tamela King, an art teacher at a local public high school, King said her kids didn’t know basic facts such as that HIV and AIDS are not the same thing. She said, “They’d ask me, ‘How do you get it? What can I do not to get it?’” King told Johnson her students “thought the HIV epidemic was over, basically, because nobody talks about it.”
But 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.
“This Too Shall Pass” by Brandon Virgil, Sr.Courtesy of Monica Johnson and Tamela King
A Powerful Learning Tool
In 2024, King 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 virus. Johnson and King were so impressed with the art that was created that they decided to produce a short book explaining HIV using minimal text and featuring an abundance of colorful, folksy artwork by King and her students as well as statements by the featured artists.
The result is For Lack of Knowledge: An Artistic Experience to End the HIV/AIDS Epidemic, which was published last August. All proceeds help fund the construction of a comprehensive education center that HEROES hopes to build on five 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.” King echoes that sentiment, noting that the image of the church is powerful, as it is a subtle call to the faith community to help disseminate accurate information about HIV and AIDS.
The book covers many topics, including the difference between HIV and AIDS, antiretroviral therapy, how to have open conversations about HIV, how folks with HIV can combat internalized stigma, how couples can get tested for HIV together, the importance of using non-stigmatizing language when discussing HIV, an explanation of both pre-exposure prophylaxis (PrEP) and post-exposure prophylaxis (PEP) to prevent HIV, HIV among women and children and much more.
Art as an Entry Point
One of Johnson’s favorite artworks appears on the pages with information regarding HIV among young people. Titled The Struggle is Real, the painting, by Alex Rider, depicts a young Black girl carrying several heavy buckets hanging from a tree branch that weighs down her neck. Rider’s artist statement 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 Monica Johnson and Tamela King
Balancing Act, by My Sherie Johnson, included in the section “HIV Does Not Define a Person,” illustrates the fact that people with HIV have a lot on their plate and everything they do impacts their health and well-being. One section in the book, which explains how longstanding poverty and health disparities drive higher HIV rates in the Southern states, is illustrated by a painting of a pelican—the state bird of Louisiana. Of the painting, titled Down South, artist Dyan 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.”
“Down South” by Dyan King(Down South) Courtesy of Monica Johnson and Tamela King; (Wallpaper and Frame) iStock
But Johnson says the image that most moved her, titled Da Boy, took her by surprise: a pencil drawing by Riley Volentine 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.
King says that including the image of Vaurice was her way of honoring Johnson, her friend of about 25 years, for becoming an AIDS advocate and living openly with HIV in a small town that could often be gossipy. “Monica took the very private pain of having to bury a child and shared it with the world” in order to educate people, she says.
“Da Boy” by Riley VolentineCourtesy of Monica Johnson and Tamela King
Ambitious Plans Ahead
According to 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 admits there’s much more fundraising to do. According to King, the duo plans to visit several churches this year to promote the book and spur more sales. “Promoting a book is hard work!” she says.
The book is available on the HEROES website. People who buy it can provide feedback using a QR code. “It’s full of basic info that everyone needs to know,” says Johnson. “That’s why it’s a very important project for us.”
King says the book is more vital than ever given that HIV is not discussed as widely as it was at the height of the epidemic in the 1980s and 1990s, even though too many people are still being diagnosed with the virus, especially in communities of color in the Deep South.
“Several members of my church bought it,” she says. “One lady came up to me last Sunday and said, ‘I did not know any of the info that was in that book, but now I plan to keep it on my coffee table so everyone can see it.’”
Visit heroesla.us/products/for-lack-of-knowledge to purchase the book and support the work of HEROES.
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