Rae Lewis-Thornton: “We’ve got to make AIDS an honest discussion”

By: NewNaturalista

Rae Lewis-Thornton recently celebrated her 48th birthday. It is a milestone she never thought she’d reach.

“When I first started speaking I would say to the middle school students, ‘By the time you graduate from high school I’ll be dead.’ There was a period when I was staring death in the face.”

Rae is a self proclaimed phenomenon. For the last 25 years, she’s lived with HIV – and now AIDS. She’s been on this earth with the disease longer than without. “The life expectancy is 3 years for AIDS  so I have perspective, I understand that life and death is not a matter of man but of God,” says Rae. “It’s a miracle with work. I could have stopped taking my medicine at any point. I’m glad I have the fight, but I’m glad technology has advanced too.”

Over the last decade Rae has graced the stages of hundreds of school panels and symposiums. Hearing her speak is a life changing experience. She can rattle off painfully true statistics. Every 9 1/2 minutes someone is infected with HIV – AIDS is the number 1 killer of Black women between the ages of 25-44 – 1 in 2 black gay men is HIV positive. But as she shares these numbers with me, I also wonder…just how many lives have been saved by her message?

I could be counted as at least one life saved. I first read about Rae in December of 1994 – her story came in the mail, on the cover of my Essence magazine. It stopped me cold.

Essence 1994

There she was – her fists clinched, her beautiful face overshadowed by a reality that felt so raw, so unbelievably unfair. “I’m young. I’m educated. I’m drug-free, and I’m dying of AIDS.”

Rae says Essence offered her the cover story after hearing her speak an awards ceremony. “I was at this black tie event, all the men were hitting on me and dancing with me and then sometime during the night I was called up to receive the award,” she remembers. “And you know how people don’t really hear what is going on, on stage? Like they understood I was getting an award, they heard I was talking about AIDS but they didn’t really hear that I had AIDS. So I got up there and said ‘Not only do I speak about AIDS, I have full blown AIDS.’ You could hear a pin drop.”  As she walked off the stage, she remembers Susan Taylor (former Essence editor-in-chief) walking up to her and saying “Rae, I believe you have a story to tell and I’d like to tell it.’” This issue is still one of the highest selling editions for the magazine.

A year after that cover story Rae spoke at my college, the University of Missouri-Columbia. I remember sitting there with a crushing feeling in the pit of my stomach. I vividly remember her saying, “In 5 years each and every one of you will know someone with AIDS.” I left there afraid, I had never been more afraid in my life. From that moment on, condoms were not negotiable. And sadly her premonition came to fruition. Two of my cousins and a close friend are now counted in the millions who have died of AIDS.

And 16 years after Rae’s story made national news, she says we still don’t know very much about the disease.

“People are curious to learn about the intimate details of my life but their attitudes have not changed. We know the sound bites, ‘Everyone can get AIDS. Use a condom, Go get tested. But we really don’t know about AIDS/HIV,” says Rae in a hurried but powerful voice. I later learn during our conversation she is tethered to her couch by an IV drip of medicine, a true example of the life of a person managing AIDS.  ”We don’t know that there are over 30 HIV medications, and that there are different classes of HIV and that you can get re infected with a new strain,” says Rae. She then pauses and slows down and I know this part she wants me to get. “And most importantly,” she says, “We still believe the stereotypes. This is why I continue to be a phenomenon.”

Rae falls into that Magic Johnson category. She looks good, speaks well and has lived well past the average lifespan of someone with the disease. She says, the uneducated marvel at this, and that is part of the problem. “People say how can you look that good? Asking that question means you have an unrealistic view of what HIV/AIDS looks like.”

“To keep it real,” she continues “White folks have moved on, while black folks are in denial about HIV.” As Rae speaks I rush to keep up with her words. I feellike I’m chronicling something bigger than me. Her life, her story is tragic but so inspiring because it can bring about real change. I listen intently at the words she speaks about the state of black America and I feel like I did when I first heard her 15 years ago. “Family members are dying and only one or two family members even know what they died of,” says Rae. “If you have a friend or wife or a husband that has HIV or died of AIDS and you don’t want nobody to know, you are perpetuating a vicious cycle.”

Way back in 86, when Rae found out she was HIV positive, she called all of her ex-boyfriends to let them know. She says it was the first and best step in stopping the cycle of infecting our community. “I think that honestly black folk’s issues of denial about AIDS, sexual abuse and the plight of the black male is connected to slavery. Since then we have been fighting to prove that we are moral people. We think, if we can show you that we have a value system and standards that you will accept us in this society. We have been taught to protect our image to the point that it is killing us. The denial is killing us.”

This brings our conversation to the issue of the “down low” black male, a topic Rae says she gets tired of talking about. “If the CDC is correct and 1 in 2 black gay men has HIV and all we can say is homosexuality is a sin and men on the downlow need to be burned at the stake, then how are we getting anywhere?” She compares it to teaching abstinence to teenagers, when it is clear through teen pregnancy and disease that many of them are having sex anyway. “Maybe we should be looking at why are men on the down low? Maybe the discussion should be how to we make an environment where they can be who they are and in turn learn why this is happening.”

There is a 2 in 1 chance that a man will infect a woman with HIV and 20 in 1 chance that a woman will infect a man. “The first thing we need to do is to insist our partners use a condom no matter how much we love them. We need to get tested. The earlier you know your HIV status the longer you can prolong your life,” says Rae. “We’ve got to use all of our resources to tackle the issue every way we can, whether it’s in our churches, pastor programs, our children, blogs. We’ve got to make this discussion an acceptable discussion, we have to make it an honest discussion. We have not made it an honest discussion.”

I had promised Rae this conversation would only last about 30 minutes – instead we talked for over an hour. I hung up the phone and felt that same crushing feeling in the pit of stomach, the one I’d felt the first time I’d met her. I remember leaving the auditorium back then mourning the thought of her leaving this earth. Today I feel the same way – but I also feel that is is unfair to Rae that we all sit back and let her do all the work.

As Oprah would say “We are only as sick as our secrets.”
Get tested. Teach. Reach Out. Use Protection.

RIP Ellis, Anita and Rahan

Check out Rae Lewis Thornton’s blog: raelewisthornton.com