After Losing Her Family to AIDS, This Woman Built an App to Save Lives
When Ruth Nabembezi's sister and parents died in her teens, the 22-year-old Ugandan created Ask Without Shame, an online platform for young people to get the sexual health information they need.
In "Unscrewing Ourselves," our first annual Sex Month on Broadly, we explore the state of sex ed today by highlighting the individuals and ideas changing our sexual health for the better. Read more from this series here.
"I knew what was wrong with her. But it was hard because I was just at school and couldn't convince my elders," says Ruth Nabembezi. We're sat in a restaurant round the corner from her small office in Kampala, which we had to vacate because it was heaving with staff and clients. In heels and a smart suit jacket, the 22 year old is a snappy dresser—but when she talks about her late sister, Nabembezi lowers her voice and looks at the floor. "Can we take a break for a minute?"
Nabembezi's parents died of AIDS by the time she was four, and she was sent to an orphanage in Mpigi, a town in Uganda's Central region. When she got sponsored to attend secondary school, she hopped between boarding school and her uncle's house, where her older sister Pamela also lived.
"I knew she had HIV because I knew about our dad and all the women he had. He was a soldier and had wives anywhere and everywhere," Nabembezi says.
Pamela was seven years older; she had given birth to children who died while they were still infants. (The mortality rate for HIV-infected babies in Uganda is six times higher than uninfected children.) Nabembezi had seen hospital records stating that her sister was HIV positive, but it was something her family never explicitly discussed.
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When Nabembezi was 16, she was called home from school. Pamela had passed away at the age of 23. "She became too thin, lost hair, and developed skin rashes. People believed that she was bewitched," Nabembezi remembers, adding that her sister herself may have begun to believe her condition was the work of witchcraft.
At one point, she was even taken to a witch doctor. "At the hospital they always encouraged Pamela to take drugs but she was reluctant because of what people were saying. She lost the morale to keep taking the medicine."
As Nabembezi returned to school and began grieving for her sister, she started to think more deeply about the lack of awareness around Pamela's illness. "I started talking to friends of mine about HIV, but it wasn't so useful, because at that moment I couldn't talk about what happened back home," she admits. "People discriminate you and isolate you when you talk about HIV, that's why even up to now I don't like talking about my story."
According to UNAIDS, an estimated 1.4 million people are living with the disease in Uganda. When Nabembezi joined a Social Innovation Academy for disadvantaged youth after finishing school, she wanted to create a platform that allowed young people to access free and anonymous sex education—the kind her sister never got.
In a country where politicians and religious leaders preach youth abstinence, it's no surprise that sex ed has been taken off the school curriculum completely. One university even expels students if they get pregnant outside of marriage. Instead, young Ugandans mainly learn about sex through rumors and superstition—like the idea that AIDS can be cured if you sleep with a virgin. The stigma and lack of knowledge ultimately fuels the spread of HIV—and results in tragedies like the death of Nabembezi's sister.
And so Ask Without Shame was born: an app, a toll-free phone and SMS line, and a Whatsapp messaging service that dispenses accurate information about sex. It currently has 35,000 users, but plans to reach 500,000 by the end of 2017. Users send in questions on the different platforms and a team of 12 doctors, nurses, clinical officers, and counselors respond to their queries. All questions are anonymous, apart from users who join the Whatsapp group to share and discuss issues communally.
"It could be questions about HIV or other STDs, menstruation, masturbation… anything regarding sexuality," explains Nabembezi. "Ask Without Shame gives people somebody to reach out to, and that gives them more life. You can get the information you need and nobody needs to know that you got in touch to share an issue."
In August, a national survey found that the overall rate of 15-49-year-olds in Uganda living with HIV has gone down over the past five years. Women, however, remain disproportionately represented, with 5.1 percent of 20 to 24-year-old women infected with HIV, compared to 1.3 percent of men.
Women tend to be the ones who contact Ask Without Shame about HIV. Nabembezi says that women seem to find it easier to come out about being HIV positive as they have already experienced stigma for being sexually liberated. For men, however, being open about their status is more complicated.
"They really fear exposing their status. We get men saying they are HIV positive but fear telling their girlfriend, who doesn't understand why he is insisting on using a condom," she says. This is more the exception than the rule: Many Ugandan men continue to have unprotected sex with multiple sexual partners after diagnosis, which health experts say may explain the disparity in the numbers of men and women living with HIV.
By talking to men and women every day about sex, Ask Without Shame also has a unique insight into gender in Uganda, a country where sexist laws—like the 2014 ban on miniskirts—have often made international headlines. For instance, Nabembezi says, women are often the ones with questions about family planning. "There is a stigma around contraception, but it normally comes from the men. We find that some men think the way to keep a woman is to make her pregnant. So if she uses family planning, they think women will go and sleep with anyone. It's about [male] insecurity."
The reasons for the spread of HIV in Uganda are complex, but outdated gender stereotypes are undoubtedly a contributing factor. It makes men less likely to be open about their condition or seek help for it, and it adds to the infection of 570 young women every week. Undoing centuries of stereotyping is a huge feat, but sex education is a simple, practical, and relatively achievable remedy to the spread of HIV and other STDs. As millennials like Ruth Nabembezi become forces for change, her hope is that every young Ugandan will better understand sex and become free to "ask without shame."