Yes, Call Her a Diva
Kecia Johnson Fights to Educate Her Community About the Facts of HIV/AIDS
by John Francis Leonard
Photos by Jay Douglas with @vodphoto

HIV/AIDS advocate Kecia Johnson proudly calls herself a diva. It’s a sobriquet based not only on her obvious glamour and sophistication, but also on her survival and resilience. Johnson has overcome not only a diagnosis of AIDS in her early years as a young black woman, she has gone on to thrive in spite of it. Along the way, she has not only pulled herself up, she has been a powerful ally of any of us struggling with the challenges of this disease that once meant a certain and early demise. Flourishing in both her career and her personal life, she has shown what can be done in light of some of the toughest medical news one can receive. She’s a popular and compelling international public speaker, author, and now proudly calls herself a healthcare worker vis à vis the home health care agency she has founded. She is truly a beacon for her community.

As she puts it so well herself, “…My goal is to be an advocate. My ultimate goal is to be a game-changer.” Through her work she is reaching out to her community, especially those living at or under the poverty level—underserved communities with higher rates of HIV as well as other life-threatening conditions.

Kecia was born in Wisconsin to a young single mother. With the help of her grandparents, Kecia’s mom not only brought up her daughter, she went on to success herself with a career in academia. “Growing up, I’ll be really honest with you, I was spoiled,” she recalls fondly and with laughter. It was an extended family of aunts, uncles, and her grandparents always around her, loving and supportive. She admits that being so sheltered and cared for had its drawbacks, especially going into college as a young woman, “Because I didn’t understand things like the value of a dollar because I thought, hey, I’ll get what I want eventually.”

Also a hindrance were the beginnings of a lifetime of struggle with self-esteem and depression. Kecia began to develop earlier than the other girls. Early on, this made her stand out and later brought a lot of attention from boys, often unwanted. Despite being what she calls a “thick girl,” she got involved with competitive cheerleading and was always popular and well-liked by her peers. Skinny was the thing as she was growing up, however, and she often hid her more developed body and breasts under baggy, tomboyish clothes. She can see it now as the root cause of early depression and anxiety; she didn’t always understand why she was so different than the other girls. She recalls, “My voluptuousness was there no matter how much I worked out or ate right.”

After college, as an adult woman, she says that she “tripped and fell into a career in the music industry.” It was here that she met the man who, in a relationship that proved toxic, would change her life and bring her to the news that would change it forever. It became apparent that she had a strong business sense. She went on to manage the careers of musicians in the world of hip-hop and R&B. She worked with labels such as Sony and Def Jam, among others, starting out in the creative and promotional departments before moving on to manage various acts. She felt protective of her clients, wanting to save them from being taken advantage of. Her degree wasn’t in business, so she read and studied everything and anything she could.

At twenty-two, she found herself living in Houston, Texas, and still working in the music industry fresh out of that toxic three-year relationship with a man who was never faithful to her. The initial signs of infection were a painful series of serious yeast infections, but, as she recalls, “I had no idea. I had the symptoms, but I had no idea they were the symptoms of HIV.”

Passing out in the shower one day, she was rushed to the hospital where the initial diagnoses were everything but AIDS. They treated her for a bacterial infection and sent her home. Back in the hospital with an uncontrollable fever and on a breathing machine, they gave her the news. She had AIDS and was down to two T cells. It was humiliating for her, still on a breathing machine, when they asked her to list all of her sexual partners. Her mother’s ob-gyn had finally been the one to break the news and Kecia had one request that she scrawled on the doctor’s pad, “Don’t tell my mother.”

It was all a lot to take in. As Kecia puts it, “In my community, being an African-American woman, you’re not taught about HIV/AIDS. The only person you know of in our community who has it is Magic Johnson…We don’t talk about it, other than Arthur Ashe at times, and Magic Johnson. And the only reason we talk about him is because he’s still healthy and he’s rich.”

Kecia also stresses the fact, in her current work as an advocate, that the signs of HIV and AIDS are different for women. She never imagined that chronic yeast infections, as severe as they often were, could be a sign of something so serious. Her mother was prone to them, so she just assumed she was as well.

The first step in Keisha’s advocacy was learning about HIV/AIDS herself. She learned everything she could about the disease. Working in close tandem with her doctor, she eventually nursed herself back to health. Seeing her peers in their struggles and triumphs led her to education and advocacy. She’s especially driven by the fact that so many remain uneducated and aren’t aware of the basic facts. She states, “That’s what’s stopping the numbers from going down.” She sees it plainly as a problem in with stigma, especially within the African-American community.

When she speaks publicly in cities all over the country and world, she enjoys nothing more than “shocking the room.” When people are blown away by the fact that she is living with AIDS, it’s not something that bothers her at all. Like I said, she’s a diva at heart and presents an image of both health and glamor. She sees this as another opportunity to educate. “I’m not offended if they think I’m gross or that it’s unsafe to eat after me because they don’t have the facts,” Kecia says bluntly.

Her mission, through her speaking engagements and other outreach, is to educate those in her community with those facts—helping them stay healthy—whether it’s avoiding the disease in the first place or living with it and staying healthy when they do have it. Kecia emphasizes, “I say yes, you can have AIDS and be healthy by taking your meds, eating right—I could live until I’m eighty with AIDS. Having AIDS is not going to stop me from living a long, fruitful life or having someone to love me.”

Kecia is in a loving relationship and is very eager to start a family—she is living the life that she tells others they can live too, regardless of HIV status. She finds it very discouraging when others living with this disease successfully still feel that they can’t, or shouldn’t date. She feels that it’s important that we date and have loving relationships, when we’re ready, because, if we don’t, we’re falling victim to the stigma we’re trying to fight. “That’s what drives me,” emphasizes Kecia, “I just love to educate because there are just so many facts the world doesn’t know!”

Kecia is known as an innovator in the HIV/AIDS community. A recent project saw her teaming up with actress and entertainer KeKe Palmer on social media. Taking over her social media platforms for a day, Kecia saw an innovative and effective way to get the message out about HIV/AIDS to a young audience. It was a tremendous success—garnering Kecia the most hits of any guest celebrity KeKe had teamed up with in the past.

An ongoing project for Kecia has been her moving and brutally honest memoir, Dying to Be a Diva. It’s a project she struggled with for years until, after finding the right representation, she took the emphasis off her corporate career and decided to dedicate more time to it. It’s the story of her life—one she found too difficult to tell in just one volume. Part One was published to much success and we can expect the second volume, Dying to Be a Diva: Secret Stilettos in 2018. Mental health is an important issue to Kecia and Volume One focuses on the issues of anxiety and depression that ran throughout her childhood. The second volume will deal with her AIDS diagnosis and its many aftershocks.

Right now in her life, Kecia describes herself with pride as a healthcare professional. She’s launched a business she calls Love of Anna, in honor of her grandmother who suffers from Alzheimer’s. The business provides home healthcare and education to those with chronic illnesses such as HIV and dementia. It’s what she’s most proud of and her main emphasis as far as career right now. She’s not stopping there though—inspired by her young niece’s struggle with the same self-esteem issues she dealt with as a child, she’s written a children’s book. Also on the horizon this year, a docu-series about her life with, and beyond, AIDS.

Kecia is a force of nature. She has excelled in so many fields that it would have to be a much longer article to describe them all adequately, but she always comes back to one thing—the desire to empower and educate persons with AIDS and other diseases. She wants to empower them all to live the best, and healthiest, lives possible—showing all of us that life doesn’t end with a diagnosis of HIV/AIDS.

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John Francis Leonard is an advocate and writer, as well as a voracious reader of literature, which helps to feed his love of the English language. He has been living with HIV for thirteen years and he is currently at work on his first novel, Fools Rush In. His fiction has been published in the ImageOutWrite literary journal and he writes reviews for Lambda Literary. Follow him on Twitter @JohnFrancisleo2.