Prejudice and pride

Helping young people with HIV fight their corner

Monday 30 November 2009

Just like other 16-year-olds from her neighbourhood in Rio de Janiero, Brazil, Gabriela goes to school and, when she can, takes the bus to the beach. Last year she was crowned teenage samba queen. All this would change, she says, if people found out she was HIV positive.

“At school we have a teacher who says people with HIV have a knife hanging over their heads that could drop at any time. He tells people that they can become infected just by touching a person who has HIV. My mum’s so scared people will find out, she makes me promise not to tell anyone — she says my life wouldn’t be worth living.”

The only place teenagers like Gabriela can be honest about their HIV status is at Pela Vidda, a centre supported by Save the Children in Niteroi, on the outskirts of Rio.

The project

Around 150 children aged 6-18 now come to the centre, which was founded in 1991 to campaign for better treatment for people living with HIV.

The project works hand-in-hand with paediatricians at Niteroi hospital to make sure the children get the treatment they need. More than that, it provides refuge, counselling, music workshops, art therapy and regular meals — and it gives them a place to talk to each other openly without fear.

“People need to realise that those with HIV are normal just like them,” says Gabriela. “Lots of people live with illness. My mum won’t understand, but when I’m 18 I’m going to try and start telling people. I don’t want to live my life hiding away, that’s not who I am. I like being me.”

Rebuilding confidence

“The stigma and social isolation of being HIV positive hits young people particularly hard,” explains Leila Chagas, resident psychotherapist at Pela Vidda. “We know of people being excluded from their communities, even threatened or abused. [But] the difference we see in the children who come to us is amazing; just having this kind of support network transforms their view of themselves.”

“There’s such ignorance around HIV and AIDS,” says 17-year-old Rafael, whose mother passed HIV onto him when he was four. When she breastfed his younger brother, she gave breast milk to Rafael too, because they couldn’t afford decent food. Both his mother and brother have since died because of the virus.

“I used to always be afraid my friends would discover I was HIV positive because where I live, bad things have happened to people who have it. You can feel like you’re totally alone. A few years ago I did think about killing myself. I don’t have a mum or a brother because of this disease and I felt like I was just waiting to die as well.

"Now I feel like that’s in the past. There's a group of kids I've grown up with at the hospital and at Pela Vidda and we're all HIV positive, so it's like having a family. We’re all like brothers and sisters to each other.”

The future generation

The young people at Pela Vidda have set up peer mentoring schemes and awareness seminars. They’ll talk to other young people in hospitals and HIV projects around Rio about issues like safe sex, building friendship, and health and nutrition.

Rafael has now started to tell his best friends and some teachers he’s HIV positive. He also told his girlfriend, who he’s been with for one year. “She was completely cool about it. We love each other and she said the important thing was to be honest,” he says.

“It’s not like I’m ready to go around shouting about it, but I feel like I'm changing every year and one day I want to tell more people. Maybe in the future it’ll be my job to tell other people who are HIV positive that they don't have to pretend any more.”