Rae Lewis-Thornton calls herself a "diva living with AIDS." However, she is not the typical self-absorbed individual making constant demandsunless a person counts the ones she makes on herself.
Lewis-Thornton, a heterosexual woman, was diagnosed with HIV in 1986. She now has full-blown AIDSbut that has not deterred her from embarking on a crusade, speaking around the country while she aims to educate and challenge people about the disease, their bodies and their futures. Along the way, she has been featured in various magazines, including Essence and Women's Day, and even has received a Chicago Emmy Award for outstanding achievement in a regularly scheduled news program.
In a recent interview, the outspoken activist talked about contracting the disease, who it was most difficult to tell and her future.
Windy City Times: As you know, we're running our AIDS @ 30 series this year. Did you think that, at this point, we would not have a cure?
Rae Lewis-Thornton: In the beginning, I didn't have an idea if we would have a cure because we didn't know very much about the disease. Maybe a couple years after the second class of medicine breakthroughsthe protease inhibitorsit gave me a clearer picture of how sophisticated the virus really is. So it took all of those years for me to say a cure is going to be difficult [ to find ] because it's a sophisticated virus.
It adapts to what you give it, [ even a ] whole class of medicines, and there are thousands of strains. It's sophisticated, and the cure would have be even more [ complex ] . In my first few years, I kept it a secret. I didn't really start to digest items about the disease until I made the transition to AIDS in 1992. So I didn't think a cure was happening for a long time. That's not the politically correct thing to say, but I've never been politically correct.
WCT: What was your life like before you were diagnosed in '86?
RL-T: I was a political organizer. I started in politics early ( I was about 19 ) ; I started locally here, with Operation PUSH, and was good at what I did. They liked me.
Rev. [ Jesse ] Jackson took me with him to Washington, D.C., for his '84 presidential campaign. When that campaign was over, I became a field organizer; I oversaw the Southeast region for SANE/FREEZE, the largest peace and disarmament organization at the time. I was in the epicenter of politics, trying to bring about change. Then, I was the national youth director of the Jackson campaign in '88. So at 24 I was a senior staff member of a presidential campaign, and by then I knew I was infected.
WCT: Take me through the day when you found out you were HIV-positive.
RL-T: This is the ironic piece about my diagnosis: There had been an Amtrak accident in northern Virginia, and there were Red Cross shortages because people were afraid to donate blood. The hysteria was, "If I donate blood, I'll get HIV"which is stupid. So I organized a blood drive, I baked cookies and brownies. It was the winter of '86; the HIV-antibody test was about a year old and, of course, the Red Cross started testing blood immediately. Three months later, I received a letter in the mail telling me that something was wrong with the blood I had donated; when I first received it, I thought it was a thank-you letter.
The next day I went in, and they told me that I was HIV-infected. The meeting took, like, five minutes in her office. She said, "You don't have AIDS. You only have HIV." What we knew back then was that everybody with AIDS was dying, and that HIV did cause AIDS. There was nothing to say [ at that point ] . She gave me a telephone number to the National Institutes of Health and referred me to an epidemiological study that NIH was doing with the Red Cross.
I went back to work, being the overachiever that I am, and did my 12 hours because I was getting ready to go on the road. I came home after 12 hours, washed my boyfriend's clothes and waited for him to come by the house to tell him that I was infected. I told him; he took his clean clothes and left. I went to bed, got up at six the next morning, went on the road and started to call ex-boyfriends to tell them they needed to be tested. I just methodically went on with my life; I didn't have an enormous amount of emotion.
WCT: That's very interesting.
RL-T: I can put up [ with a lot ] . I grew up physically, sexually and emotionally abused. I'd literally been taking care of myself since I was 17, so I figured that if I could live the life I'd already lived, HIV would be a breeze. Mind you, I didn't think I'd get AIDS. I had to face the issue when I dated but beyond that, I didn't have to face it.
Also, I had assumed that I had been infected recently. Years later, I found out I had been infected three years prior [ to being diagnosed ] . I've never disclosed the person's name publicly. He wasn't on my list because of his staturewhat he did for a living, etc. I couldn't figure out who could've infected me but there was that stereotype: I was dating men with six-figure incomes, so how could I become infected? My body doesn't come cheapbut what I found out was that it didn't matter.
Most people back then didn't know they were infected until they were dying. The antibody test wasn't developed until '85and some people were still calling it GRID [ gay-related immune deficiency ] .
Rev. Jackson was the first presidential candidate with an AIDS policy, so I was familiar with the disease. He slept in AIDS hospices, and we had gay- and lesbian- [ related ] deaths on the campaign; Ronald Reagan refused to say the word "AIDS." I knew that this disease was infecting and affecting people; we just didn't have enough information. They were saying that the only heterosexual women who could get it were prostitutes. Again, all these stereotypes … . And there's the logic: If men could get it from sex, why couldn't women?
Here's the other ironic part: I was in an environment that forced us to think critically and compassionately about HIV, and I was already infected and didn't know it. I was one of those people who started using condoms. I was out in D.C., and everybody had gay friends. One of my friends said, "Mm-mmm ... Leave it alone." There was a lot of bisexuality and risque behavior happening in the '80s. I had been using condoms consistently for a couple years before I found out I was infected.
WCT: Who was it hardest to tell?
RL-T: [ Pauses. ] Jesse Jackson and his wife, Jackie.
WCT: Why is that?
RL-T: She actually took me under her wing. She saw something in me and gave me a chance. During the '84 campaign, she'd see me on the campaign trail and say, "Rae, whatcha out here doin'?" I'd say, "Trying to get your husband elected president." One night in Atlantait was Super Tuesdayshe asked, "What are you doing tonight?" I said, "I don't know," and she said, "Come to the hotel." I literally crawled in the bed with her. She has been like a mother to me.
I shared their home for five years. Congressman Jackson, Jonathan and I were housemates for almost five years. [ Note: Congressman Jesse Jackson, Jr., who first won his seat in 1994, and Jonathan Jackson are brothers. ] The Jacksons had bought a second home across from their family home when Jesse and Johnny got out of college. When I moved back to Chicago, I stayed [ at that house ] .
When you believe in someone's mission and have supported it up close and personal, I asked, "Would he practice what he preached? Would he be the man who slept in those AIDS hospices?" Then, I had lived in their house and not told them; I had lied.
WCT: Do you really feel that you lied or ... ?
RL-T: I just didn't tell; I didn't lie, but I told everything else. But I knew that I had to disclose and then work my way down, because people talk too damn much. I had told five people over seven years.
When I made the transition to AIDS, I went from three pills a day to 15 pills a day. I went from a size 12 to a size six in six months. I became clinically depressed, I was sick all the time, [ the drug ] DDI was working on me, I was shitting on myself, throwing up ...
WCT: And people wanted to know what your weight-loss secret was?
RL-T: Yes! I was like, "Girl, I've been hittin' the gym." But I knew I had to telland I had to start at the top of the pyramid.
So I stood in [ Rev. Jackson's ] kitchen and said, "Reverend, I gotta talk to you." He said, "What is itare you pregnant?" I was like, "I wish." [ Smiles ] I said, "I have AIDS." He said, "You mean you have HIV." I said, "No. I have AIDS."
Think about what was going through his mind: Everybody he had seen with AIDS is dying. So, here I am telling him this, and he said, "I have to process this." He took a deep breath and said, "Rae, I loved you before AIDS, and I love you with AIDS," and we prayed. Then, we went into the dining room and told Mrs. Jackson together. THAT was hard.
WCT: How did she react?
RL-T: It took a while to digest. I had to sit at the dining-room table for the rest of the evening. She said, "Baby, are you telling me you're dying?" Keep in mind that the Jackson's had another close AIDS death: Keith Barrow [ activist ] Rev. Willie Barrow's son. He used to baby-sit Jesse [ Jr. ] and Johnny. She then said, "We need to move you in the house. You can't die by yourself."
After I told them, I started to tell and tell and tellthe rest of my political family and other close friends. Of course, I became the center of gossip. The girlfriends of some of my male friends wanted to make sure they never had sex with me. All the men who wanted to have sex with me who I turned down were happy I had [ rejected ] them. Then I went on with my life; it felt like a weight had been lifted from my shoulders. The secret had been killing me.
WCT: Could you talk about what you have done over the years, talking with audiences about HIV/AIDS?
RL-T: I wasn't a public speaker; I was an organizer. Someone from Test Positive Aware [ Network ] knew I was in politics and called me saying, "I have a teacher who wants someone to come to the school who's not gay and who's drug-free. Will you do it?" The teacher convinced me to come.
About the time of the third workshop, I noticed that some kids were still standing around. I asked the teacher if she made them stay, she said, "No. These kids are skipping class to hear you speak." On the second day, there were kids everywhere. At the end of the day, a little Hispanic girl came up to me and said, "Ms. Lewis, I know you said you weren't a public speaker but you shouldn't stop because the Lord is using you." I patted her on the back and asked myself, "What does she mean by that?"but I couldn't shake it. So I woke up one morning and decided this is what I'm supposed to be doing.
I quit my job, with no speaking engagements lined up, no brochure, no direction. Two weeks later, that same teacher called me and asked if I would come to a retreat. She could only give me 15 minutes; when I left, every other school that had attended was confirmed.
Six months later, I received the Community Service Award at the Expo for Today's Black Woman. It had been an interesting event. You know how people sometimes half-listen? Well, people knew I was an AIDS activist but they missed the part about me having AIDS. I stood up and said, "Men have been hitting on me all night long. Not only do I have HIV, but I have full-blown AIDS." You could hear a pin drop. Susan Taylor [ of Essence magazine ] grabbed me as I was walking off the stage and said, "We'd like to do a story on you." I asked her, "Why?" She said, "I believe you have a story to tell, and I want to tell it." It was controversialeven the title was controversial.
If I don't go for anything else, I will go down for giving a face to Black women with AIDSa face and lifestyle where they can see themselves. There are people with AIDS who live normal lives.
I took a beating from the AIDS community for that.
WCT: For being on the cover?
RL-T: For being on the cover, being on Nightline"She's a latecomer." I didn't start speaking until '93 so people asked, "How in the hell did you get to be on the cover of a magazine?" Ted Koppel had always done AIDS stories, though.
The thing about me is that, one, I reach middle Americaboth Black and white. No one does what I do across this country. And I have a unique way of talking about AIDS so that people get it; it's a gift. One of my Twitter followers donated $300; she said, "Reading your blog and seeing your tweets made me a better woman." I deal with the truths of all of this.
It doesn't matter if you're gay or straight. It's about what I can share with you. This is what I know; this is my experience. I can't talk about gay issues because I'm not gay. But do I tolerate gay-bashing? Hell, no.
So I'm a little controversial. I've been invited to one national AIDS conference in 20 years.
WCT: When was that?
RL-T: In '96; it was the first women's HIV conference in Washington, D.C. I've been featured on Nightline three times, I've been on Oprah and I have a local Emmy for a hard-news story.
WCT: Do you feel that people have gotten really complacent about HIV/AIDS? There was a time when you saw red ribbons everywhere.
RL-T: I think there's a lot of denial about HIV, really in the African-American community. The fact that people now live longer with HIV has made it seem not as urgent. It's not a sexy topic anymore. There is a lackadaisical attitude, generally speaking; but among African Americans, there's just a lot of denial and a lack of culpability. Plus, we're not addressing the real issues responsible for a rise of HIV in our community.
WCT: What do you think the real issues are?
RL-T: I think poverty is one.
WCT: What about the whole "down-low" phenomenon? Some people seem to think that it is a huge factor.
RL-T: Let me get this out. I told [ writer ] J.L. King that he is a fucking fool and that he needs to just admit that he's gaywhich he has done. ( I said this way back when. ) My position about the reaction of the Black community and the emphasis was wrong. The emphasis was, "These Black men are infecting Black women because they're having these seedy relationships." Instead of saying why our Black men have these complex relationships, has anyone really asked a gay man who is living a double life but would prefer not to do so? The emphasis should be "How do we begin to have an honest conversation in our community and create an environment where [ those ] Black men are not ostracized from their families?" I can't believe that a person living a double life wants to, unless they're psychotic.
WCT: OK. With everything you've been through, what is the one thing you've learned about yourself?
RL-T: [ Pauses. ] That I'm stronger than this fucking disease, AIDS.
Rae Lewis-Thornton will present the commencement address at Northeastern Illinois University's commencement ceremony at 10 a.m. on Saturday, May 7. For more on Lewis-Thornton, visit www.RaeLewisThornton.com .