A long-term survivor and activist opens up about life, love, and HIV—and why we need to keep the conversation going
Positively Aware Editor Jeff Berry
Jeff Berry @paeditor Photography By Duane Cramer

At the U.S. Conference on AIDS in October, Maria Davis spoke candidly about her experiences with HIV/AIDS to an audience of her peers. Many were hearing her speak for the first time, but Davis has been speaking out about HIV for years. Positively Aware caught up with her recently to talk about the work she’s been doing, and why she is so passionate about helping others navigate their own journey.

JEFF BERRY: When you first walked out on stage at the U.S. Conference on AIDS in San Diego, it was very emotional, not only for you but for many in the audience. Can you tell us what you were thinking in that moment, and why that experience was so emotional for you?

Maria Davis: I was just thinking about my life and when I was first diagnosed, not thinking I would be living all that I’ve lived. Being in front of people that believed in the same thing I believe in … they’re there because they care. In the beginning when I first got diagnosed I was afraid to tell anybody and I didn’t think anybody cared. So just to be in front of so many people and the love that I received from the room—I felt it. It was so strong.

Backing up a little bit—can you tell us a little about yourself for people who may not know you?

Well, I’m now what they call a promoter [laughs]. I started out modeling, which led me into being a promoter because I love music. My family, my mother, always had music in the home. I grew up on music, thinking I was an artist, every day singing, microphone in my hand, trying to do Michael Jackson steps. So I always loved music and I loved to talk and meet people. So being a promoter was so perfect for me. And then meeting so many industry people, [such as] Puffy, and being in the offices of powerful people, sometimes seeing the artist’s information not being handled properly, caused me to be a promoter and say, “You know what? I have influential friends in the business. I can get them to my club and I can get some of these unsigned artists to come in and showcase their music in front of them.” That went into teaching artists about publishing and always having to be onstage, in front of the stage, but most important, about speaking up. Reading those little fine lines in contracts, and that went into also getting signed artists to be on my show—I had people from Jay Z to 50 Cent. A good friend of mine was at a club called Sweetwater and she kept begging me, “Maria, Maria … you need to do your own show,” and I said, “Ohhh … okay, okay.” I kept putting it off and then one day I just decided to do it, and that started in March 1994. I’ll never forget it.

[With] the success of Mad Wednesdays and [having] two children while being a model, I just decided if anything happens to me, I want them to be taken care of, so I decided to apply for a life insurance policy—and it was a very large life insurance policy. There was a requirement that you take an HIV test. Of course, I took the test in 1995 with no problem. I had heard about HIV, but it was all about AIDS at that time, and there wasn’t much information. I didn’t think that I was a person who was at risk. I don’t have HIV. I don’t have AIDS. So I took the test and days later it came back in the mail saying, “Dear Miss Davis, We’re sorry to inform you … first, we reject you. We can’t offer you a policy. We also want to let you know you tested positive for HIV antibodies. Please seek help. Here’s a …” I think it was an 800 number. But I was so shocked and surprised. Standing in the post office by myself, nobody to talk to around me. What am I going to do with this? How am I going to tell my children? What am I going to do? And so I sat on that letter for a while. I was in a relationship with someone and I had to tell them that they had to be tested. And the crazy part about it was that because we didn’t have any information, we both went to the health department. We got tested and they said, “Which one of you wants to come in and get your results first?” He went in and came out—“Ahhh! I’m negative!” I was like, “Yes! That was a lie! I’m not HIV-positive. I don’t have HIV.” When I went in the office the woman said, “Miss Davis, we’re sorry to tell you that you are HIV-positive.” My whole … I can’t even … I mean, my heart dropped to the floor. That was crazy, because that was one of my first lessons—that you can be in a relationship with someone and you could be positive, or they could be positive and you could be negative, and that was very confusing to me.

CLASS ACT: MARIA DAVIS ADDRESSES STUDENTS AT DILLARD HIGH SCHOOL IN FORT LAUDERDALE FOR A WORLD AIDS DAY 2014 EVENT.

So fast forwarding, [I didn’t get] into care immediately. A concerned friend told me about an organization called Friends in Deed, and I started going to their groups for people who were HIV-positive and living with AIDS. I kept going to the group and going to the group and you know, not connecting, because I was trying to figure out why I had this. They felt because I wasn’t responding, just sitting there, that I needed to be in crisis counseling, because they knew that I wasn’t taking any medication and I was losing a lot of weight.

I remember Scott was the gentleman I came to see, and he looked at me and said, “I’m going to talk to you just like you were my sister.” He said, “If you don’t find a doctor, if you don’t get into care, and start on treatment, you’re not going to be here to see your children.” I had never thought about that. Wow. See my children? I’m not going to see my children? That day I promised myself that I would find a doctor and they helped me find one. I was scared. I didn’t know what I was going to ask the doctor when I got into the office. That’s why Merck’s I Design campaign is so perfect, and I love working with it. Because I remember how I felt walking into that doctor’s office for the first time, not knowing what questions to ask, not knowing anything. The campaign has a desktop and mobile app, a medication checklist, and conversation worksheets that you can download and take into the doctor’s office with you. You don’t have to be afraid. The doctors can download it. The social workers can encourage their clients to do it. I think it’s just such an important piece for people who are living with HIV to empower them to have open, honest, and meaningful conversations with their doctor about how they’re doing and feeling on their treatment plan, and if their treatment is individualized for them. What are you going through?

I’m aging right now. I’m over 50. I feel good. But menopause is one of the first things on my mind, and how is that going to affect my treatment? I have to talk to my doctor about that. All of the things, the concerns, that come with aging, are so important to talk to your doctor about. I’m a woman, and I have unique needs that are different than a man’s needs. Some women become pregnant, and maybe need to be on a different treatment plan. It’s important for African American women, who are disproportionately impacted by HIV. So that’s my reason for being part of I Design, but not my only reason. I want to talk to people living with HIV. You mean something. Your life is worthy, so take care of yourself. Make sure that your unique needs reflect your treatment and talk to your doctor, and don’t be afraid.

Your story is very inspiring and strikes a chord with so many people, especially women who are living with HIV. Why do you think others can so readily relate to your story?

Because I’m honest, I’m truthful, and I don’t hold back. I’m not afraid and I don’t care about stigma. I don’t care about what people think about me living with HIV—my life is meaningful, and [just] because of [my] circumstances, you cannot judge me. I can do anything I want to do. I can be anything I want to be, and I’m powerful—and that’s what people feel when I speak.

That’s a great message. You could have remained silent about your status, but you chose not to. What prompted that decision?

[Chuckles.] It was so funny. One day I was in a hospital and I don’t know why … I was watching television this particular day and they had something on about HIV. I don’t recall what it was and I thought to myself, “They need to hear my story. They need to hear from someone who’s HIV-positive.” There weren’t a lot of people talking about having HIV except for Magic Johnson. Very few. I didn’t know any women. Magic Johnson was the only man that I knew. I felt it was important for me to tell my story to help other people that were living with HIV, especially women. You don’t have to be afraid. Your circumstances do not determine your destination in life. So I felt that if I lift my voice, if I spoke up, that that would encourage other people to speak up. There would be a domino effect.

I do a lot of work in my community—I live in Harlem. When I first joined First Corinthian Baptist Church in Harlem, there might have been 600 members and I remember going up to my pastor, Michael A. Walrond, Jr., and saying, “Listen, y’all have an HIV ministry here? We ought to do something about that. What you doing in church about HIV?” [Laughs.] And he was like, “No, what y’all doing about HIV?” So he let me do whatever I wanted to do. I brought in my doctor at the time, Dr. Theresa Mack. We brought in programs and talked about prevention, and testing. After that, people would come in and say, “I’m HIV-positive [whispering]. What can I do to help? I don’t want anyone to know.” So we had to meet people where they were. We didn’t force people to share their story about being HIV-positive.

You’ve talked very publicly and candidly in the past about the conversations that we need to have with today’s youth. How does that work out when, for example, you’re working with a religious or faith-based organization—are they receptive? It sounds like they are, but have there been any instances where that’s been a challenge for you?

Uh-huh. Because sexuality is a hard conversation. People don’t want to let people know what they do behind closed doors. My point is, I’m not here to judge you. I’m here to try to help you make better choices that don’t hurt your future. HIV is a preventable disease. You have to protect yourself—but first of all, more importantly, to love yourself enough to want to protect yourself. There are so many other things in our community that cause people to make choices that might not be positive. So, I try to get people to talk about that, because we might need help in different areas. There are a lot of different issues in our community, especially in the African American community. One of the biggest issue is mental health. We’ve all been traumatized in our lives, and how does that trauma affect our decision-making? That’s very important. Being diagnosed in 1995—that was trauma to me. So what kind of help did I need to get to make sure I was back on the right track? That doesn’t affect my choices? Being afraid doesn’t mean that I have to bow down to what somebody asks me to do. So how I felt is what I talk to my young people about. You don’t have to be afraid to speak up. Let someone know that you need help. This way, they feel comfortable, and let somebody know, “You know what? You want to have sex with me without a condom. That’s a no-no. I love me. I wanna live. I’m not gonna let you use me. I’m not gonna let you use my body. I don’t have to use sex to pay my rent and my bills and to eat. There’s help for me.”

It’s so important for us to share this information and to just love each other. That’s the most important thing to me, that we show each other love and compassion. We don’t judge people, whatever their circumstance may be. Everybody is a human being and they deserve the right to live.

FOLLOWING HER SPEECH, MARIA DAVIS (LEFT) LISTENS AS THE ATTENDEE TELLS HER STORY.

What is the most important message that you would like other women to know or to hear?

That love is very important, and that we treat each other with love, and we’re careful about what we say and how we say it to people. If your words are negative, think about it before they come out of your mouth. Support people who are living with HIV, and support people who are living with AIDS.

Can you describe the work that you’re doing now, such as with the Positive Women’s Network-USA?

Positive Women’s Network is doing the same work that I’m doing, in different parts of the country. Their mission is to empower women who are living with HIV to be leaders in our community, and I’m a leader in my community, and they’re just doing great work.

World AIDS Day is coming up and that’s so important. Other than my birthday, that’s one of my biggest days of the year that I really love. To honor my friends who are no longer here, and to honor those living with HIV and AIDS who are still here, and to empower our community—and to keep HIV in our conversations. I think people are talking less and less about HIV. They say now that it’s just a chronic illness, but it’s not. There’s a stigma. The stigma is still there.

Good point.

People are still in hiding. I still get people telling me every day, “[Whispers] I’m HIV-positive. I’m still not ready to talk about it.” We shouldn’t even have that anymore. People shouldn’t be afraid to talk about their status.

Knowledge is power, and knowledge is life—and that’s so important. Love is life. So let’s get knowledge, let’s love, and let’s live.