In the staid lobby of the Durban International Conference Centre, a woman in a wheelchair is shouting: “I have a penis! I have a vagina! I have sex!” Stella Iwuagwu, 47, from Lagos, is trying to animate a group of disability protesters standing politely with their placards standing a wall. “It’s a silent protest,” replies one. They are trying to draw attention to how the AIDS 2016 conference excludes disabled people. Most of the protesters have some form of disability but not all are HIV positive.
Silence is useless, shouts Stella, frustrated. “If you don’t make a noise, they won’t notice you.”
Some of them take up her cry and one follows up with: “I am disabled. I masturbate!” Useless! cries Stella again. “No one is interested in masturbation. That’s sex with yourself. It’s safe sex.”
Stella’s passion for the rights of the HIV-positive disabled emerges from her own experience. In 2007, she had returned to Nigeria from the US where she was doing a PhD on the sexual and reproductive rights of women living with HIV, to do research. A car accident left her paralysed from the chest down.
“Before I became disabled, I wasn’t focused on this population. But a lot of things I took for granted when I walked around in my high heels, I’m now seeing clearly and I want other people to see that,” says. “People in wheelchairs are invisible. Even with my level of education, you have to overcome obstacles that other people cannot even imagine.”
Stella now lives in Lagos, where she is executive director of the Centre for the Right to Health.
“I learned that HIV prevention interventions have forgotten we exist. There seems to be this notion that people with disabilities are voiceless and asexual.
But people with disabilities have vaginas and penises and desires and they engage in sex, sometimes unprotected sex because they do not have access to preventative measures or information about the need for prevention.
“In a developing country, you usually need to go to a chemist to buy condoms. How do you get there when most chemists are not accessible? If an adolescent girl is visually impaired, how does she read a flyer telling her about HIV?
“In the early days of my disability I had a lot of questions nobody could answer. I saw more than seven doctors. I had scans of my bones and bladder but nobody asked me about my sexuality. Eventually I asked my psychiatrist: why does no one care about my sexuality?
“He said: ‘Oh, it’s usually only the men who care about sexuality.’ I was doubly offended. So, even this was gendered! They care about the penis. Is it working? Are there operations to make it work again? But what happens to the forgotten hole – the vagina? It doesn’t matter whether you feel it or not, just stick it in there!”
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This article originally appeared on WhatsUpHIV, reporting live from AIDS 2016.