By Lolly Bowean
It’s a Friday night, right around that time when so many men and women are headed to their favorite local bar for happy hour or a club to kick off the weekend.
In her studio apartment on Chicago’s Gold Coast, Rae Lewis-Thornton curls up with a cup of Earl Grey tea, pulls out her sleek iPhone, which is nestled in a pale pink Juicy Couture plastic cover, and goes to work.
“Don’t (fool) around 2nite and get AIDS,” she posts to her Twitter account.
“The (guys) look real good at the bar. I wonder how many of them have AIDS,” she tweets later.
From the time she was diagnosed with HIV in 1986, Lewis-Thornton has made it her life’s mission to spread HIV/AIDS awareness.
She has toured the country speaking at high schools and colleges, written first-person columns and magazine articles and produced television segments on the topic. She gained national popularity when she appeared on the cover of Essence magazine and is widely regarded as the first black woman to publicly tell her cautionary story.
Now Lewis-Thornton is using social media to educate about safe sex and give people a day-by-day, moment-by-moment journal of what it’s like to live with AIDS. Hour by hour she updates her profile offering encouragement, blunt warnings and sometimes just venting about her physical ailments.
She is upfront about how she contracted AIDS — through unprotected sex. And she hopes that by taking responsibility she will save the lives of others.
“It took everything I had to start this day ... ” she Tweets.
“HIV aint no joke.”
“I hope you didn’t bring HIV home like I did.”
Lewis-Thornton was reluctant at first to join social media, believing her message would not translate to Twitter’s concise format.
“I went kicking and screaming to social media,” she said. “I have no idea where any of this will take me. But I know the message is relevant.”
Using Twitter to spread a message is nothing new. But Thornton-Lewis’ crusade is unique because not only is she trying to heighten awareness, she’s chronicling her life with the disease, said Booker Daniels, a spokesman with the Centers for Disease Control’s division of HIV/AIDS prevention.
“She is a face on a condition that has recently gone largely faceless,” Daniels said. “We are inspired by her work and her ability to engage people in a real, candid, forthright, accurate and insightful manner.”
On Twitter, Lewis-Thornton is able to speak to hundreds of people right where they are — whenever they pick up their phones, unfold their laptops, check their Twitter feed, they can hear her.
“She’s reaching that generation that is not going to sit and read a brochure,” said Johnathon Briggs, a spokesman for the AIDS Foundation of Chicago. “She is injecting these messages where people are living. Her tweets could save somebody’s life.”
Lewis-Thornton’s campaign couldn’t come at a more important time. According to the CDC, although blacks account for about 13 percent of the U.S. population, 49 percent of people diagnosed with HIV and AIDS in this country are African-American. HIV/AIDS is the leading cause of death for black people in the United States, the CDC said.
At the same time, research has shown that a greater percentage of African-Americans have flocked to Twitter. According to a report released in April by Edison Research and Arbitron, 24 percent of the 17 million Americans “Tweeting” are African-American.
That’s what took Lewis-Thornton to social networking. For years, she was able to earn a living from public speaking engagements and writing assignments. But as HIV/AIDS became a less sexy topic in the past decade, the speaking engagements became fewer, she said. Then a coveted book deal fell through.
In January, she started actively tweeting. Already she has about 1,870 followers and has posted more than 20,000 tweets. She has more followers than some Twitter campaigns organized by national organizations.
“I call this hard-core activism,” she said. “I’m reminding you on a daily basis that AIDS is real. If you have AIDS you can live with it; I’m an example of that. I want you to see the life — the good, the bad and the ugly.
“Once I get re-Tweeted, I’ve reached thousands of people in minutes,” she said. “I’m keeping the message fresh. You haven’t thought about HIV since you read that article 10 years ago. Now I’m keeping it in your face.”
Every day there are hundreds of “followers” who respond to her publicly, offering prayers, encouragement and sometimes just makeup and fashion trends.
There are dozens of private, direct messages sent to her in response to her tweets, she said. One woman told Lewis-Thornton the tweets gave her the courage to tell her boyfriend to wear a condom. Another messaged Lewis-Thornton to tell her that the tweets persuaded her to get tested.
It was a tweet by Lewis-Thornton that Rondrea Mathis said gave her the nerve to say no to unprotected sex.
“Sometimes we are afraid to say, ‘no, we can’t have sex unless you use a condom,”‘ the 27-year-old Tallahassee, Fla., resident said. “I wasn’t always a stickler about using protection or us getting tested. She opened the reality for me. She’s the first person I know who has AIDS.”
Last month, Lewis-Thornton hosted a Tweet-up — a social gathering promoted only on Twitter — and 300 people showed up.
“We were at a social event about HIV and AIDS. That translates into action,” she said.
At the gathering at Encore Liquid Lounge in the Chicago Loop, Lewis-Thornton gave out gift bags with her favorite things: coupons for local restaurants, eye-shadow and lipstick compacts, body butters and hair creams. There were also female condoms, lists of HIV testing sites and brochures in her “swag bags.”
“I didn’t stop doing the work because people stopped calling me to speak,” she said. “I swallowed my pride and found a new way to reach people.
“I will do this work until the day I die.”
In person, Lewis-Thornton is sophisticated, refined and always aware of her appearance. Despite her illness, she’s got a special finesse, she says, and likes her reputation for always looking pulled together and stylish. She calls herself a diva with AIDS.
“I’m articulate. I’m educated. I’m well-dressed. I don’t look sick,” she says.
But online, she goes from raw to vulnerable, from spiritual to biting.
“Sipping on Earl Grey tea, eating my @morecupcakes, and getting ready to read. small pleasures AIDS can’t take from me! POW!” she Tweeted.
“I really want to crawl back in bed.”
“God’s time is not our time. Hold on. Keep the faith.”
Still, she is calculating about her tweets. Friday nights are devoted to warning her followers that they need to use protection. On Saturday mornings, she emphasizes getting tested.
“I bet HIV partied with some of you all over the weekend and you had no idea.”