With a dance troop on site and support seven days a week, CERVAC is changing perceptions of disability within some of Brazil's poorest communities. Corinne Redfern travelled to Recife to report.
Rainbow-coloured dress flying, 31-year-old Gisele Carla spins around, arms outstretched and staring at the ceiling. Her partner – a 22-year-old called Eduardo – gazes at her, not even attempting to hide his wide-mouthed admiration. As the band in the corner plays at top volume and eight other couples twirl their way around the hall, Gisele taps her toes and makes her way to the centre of the room. She’s been practicing this routine twice week for months. And she’s determined not to put a single step wrong.
It’s been over 28 years since CERVAC first opened its doors – a charity-funded centre offering free support for children and young adults with disabilities in one of Recife’s poorest communities – and it’s still the only school of its kind in the area. A brightly-coloured soft play room provides visual and tactile stimuli for the 40 or so under fives brought by their parents for eight hours a day, five days a week. A semi-covered gym hall is stacked with hula hoops, basketball nets and painted traffic cones to help older pupils improve coordination. Dance classes take place every Friday – with performances held all over the country several times a year.
But while there are currently over 80 children on CERVAC’s books – all with impairments ranging from Down Syndrome to Microcephaly – their families are still forced travel to for up to 200 kilometres every day. And there’s a waiting list of 73 others who still can’t get help until the project raises more money.
‘I hate having to turn families away,’ says Alba Lopes, one of CERVAC’s three founders. ‘It breaks my heart, because it’s very hard for families to get support when their children have disabilities, and culturally it can be very difficult to teach parents not to hide their kids away. We want to raise awareness of the progress that can be made simply by including children in mainstream society.’
Alba opened the school when she was only 19, after Gisele – her niece – was born with Down Syndrome. ‘I was talking to two of my friends about it, and we realized that there wasn’t anywhere in Recife for families to take children like Gisele for support,’ she tells Marie Claire. ‘My uncle and aunt were lucky – they ran a bakery, and they had the money to relocate to Rio where there were specialists who could work with her. But when they brought her back to Recife, they’d meet up with parents of other children with Down Syndrome, and the disparity between the kids’ development was so painful to watch. Giselle could walk and communicate, but the others weren’t near her level at all. So – together with my friends Marcus and Mauricia – I decided to help.’
The three teenagers sat down and discussed what they needed to do in order to establish a free school for disabled children in the favela – dividing up responsibilities as they went. Alba, who already had a degree in biological sciences, went back to university to study Speech and Language therapy. Marcus took up business administration. Mauricia did a degree in teaching. ‘We figured that way, we had the three main pillars covered,’ Marcus explains. ‘It’s always been a team effort, right from the start.’
‘While we were studying, we started looking into exactly how many children within the favelas might be in need of support,’ Alba recalls. ‘So we went from house-to-house, asking if we could meet their families. We identified 64 children with disabilities – but persuading their parents to let them spend a day or two every week was tough. We saw so much awful abuse going on. There were children tied up with ropes, or locked up in small rooms in the dark. One little boy was being made to live in a dog house – chained up like an animal in the dark. Every day we went and knocked on more doors, then every night I went home and cried.’
Tears aside, their work began to pay off. After a few weeks, five families had brought their children to the small church hall where they were working. A few weeks after that, and the number had doubled again. When Alba and Marcus got engaged after six years of working together, there were 50 families in attendance – cheering as the couple exchanged vows in an old school hall in the neighbourhood.
‘Our philosophy is different to that of most hospitals in the area,’ Alba explains. ‘I don’t want parents to bring their children here and just leave them with the experts – I want it to be a collaborative experience, where their mums and their dads and their brothers and their sisters and their grandparents are all involved. That’s why we organise so many classes for parents – we’re working with a local sex therapist to host lectures on maintaining your sex lives when you’ve got a child who requires 24 hour care – and we get siblings to come along whenever we hold parties, too. If we want CERVAC’s impact to be as big as possible, then it has to be inclusive.’
These days, Marcus and Alba have two teenage daughters who help out with running the project in their spare time, and an additional 27 members of staff on site, including highly qualified nurses and psychologists. Over the last 25 years, they’ve helped over 300 children – supporting them from a few months old until they’re well into their 20s. ‘Of course some of the children won’t make it to adulthood,’ Alba says slowly. ‘But in those cases, we still try to extend their life expectancies – or at least make them as fulfilled as a possible. When CERVAC does lose a child, it’s very painful. But we want to support the parents through that process.’
‘Ultimately, we just want to help families – whether that’s medically or psychologically,’ she adds. ‘And we want to raise awareness of what every child who comes here is capable of. These days, many of the older pupils even go to mainstream schools for part of the week – we’ve managed to work closely with teachers in the area to help with integration, and the results are beyond anything I’d hoped for.’
Meanwhile, Gisele – who’s employed full time as the centre’s secretary – can’t imagine a life away from the centre. ‘I love it here,’ she says. ‘It makes me very overwhelmed to think that it was started because of me. I hope we can help show that being different isn’t bad. Everyone is different anyway – it’s just more obvious with some of us.’
Support CERVAC at cervacrecife.blogspot.co.uk.