Suspicion and stigma surround disability issue in Haiti.
Daily life in Haiti is a struggle in a way that few westerners can imagine. Simple everyday tasks, like going to school or shopping for food, have become enormously challenges in a country where most basic infrastructure was wiped away and, more than two years after the earthquake, has still not been fully restored. The young and able-bodied are visibly exhausted by the struggle to survive, and for those with disabilities, the obstacles seem almost insurmountable. Compounding the difficulties for Haitians with mental and physical disabilities are social prejudices and superstitions. There is little sympathy, let alone support, for families of disabled children and stigma leads to further marginalisation.
“Because life is just so difficult here in Haiti, coping with a child with a disability is something that many parents feel they just cannot do,” explains Gena Heraty, a Mayo woman who has been working in Haiti for the last 19 years. As Director of Special Needs Programmes with NPH [Nuestros Pequenos Hermanos], she sees the plight of struggling parents on a daily basis. Since the earthquake of 2010, the Kay St Germaine Rehabilitation Centre in Tabarre outside Port-au-Prince has been busier than ever. The facility offers physical and educational support to children with a range of disabilities, and provides one of the few alternatives to institutional care – or, in some tragic cases, abandonment.
“There is a stigma around disability in Haiti,” Heraty says. “Parents themselves love their children, but often it’s their extended family who will criticise them for spending time on them. They don’t see the point because that child will never be able to make a financial contribution or provide for the family. It’s a harsh reality here.
“A mother travelling to Kay St Germaine on a local ‘tap-tap’ [bus] will have each of the passengers in turn tell her what she should do and how she should look after her child. That’s hard to take.”
Perceptions of disability are also bound up in superstition and a tangle of religious beliefs. Physical disability is often interpreted as a punishment from God, or one of the voodoo pantheon of ‘louas’ or spirits. Disabilities which are present at birth, or the result of an accident, are sometimes interpreted as signs that someone has been cursed, or had a spell cast over them.
Many Haitians continue to regard physical and mental conditions as contagious, and those with disabilities can be shunned and treated as outcasts. Children with disabilities are often kept at home – out of shame, and a desire to protect them from public ridicule.
Inside Kay St Germaine, where mothers begin arriving as early as 5am, the attitude could hardly be more different. The centre is friendly and welcoming, providing care on a par with any available in the developed world. Parents are ushered into a central courtyard, sheltered from the sun, while they wait to take their children to a range of physical and psychological therapies. For the older children, who attend the special needs school, assembly at 8am is just as lively and chaotic as at any other primary school. Many children arrive on the NPH bus – funded mainly through Irish donations – which collects them from a wide hinterland.
A typical day at Kay St Germaine can involve some time in the classroom, speech and language therapy, hydrotherapy and physical and behavioural coaching. The centre has a large staff of local people directed by Gena Heraty and a team of volunteers. Having worked for so long in the special needs sector in Haiti, Heraty is concerned that some initiatives in the wake of the earthquake have not yielded real results.
The rush by prosthetics companies to assist amputees is a move that Heraty believes has achieved little in the way of real progress for those with disabilities. “We’ve seen situations where people have ended up getting three or four prosthetic limbs,” she notes. “People simply went around to each of the agencies in turn. What they didn’t receive was rehabilitation or other support. That’s not really the answer, in my opinion.”
As for attitudes to disability, Heraty believes there is still a long way to go, but that change is possible. The case of a 12 year-old boy from NPH’s St Helene Orphanage offers hope that perceptions can shift. Olsen is a long-time resident at the orphanage’s special needs unit, Kay Christine, also run by Gena Heraty. Having contracted meningitis as a child and developed hydrocephalus, or fluid on the brain, Olsen has profound brain damage. In recent months, he has required hospital treatment at NPH’s paediatric hospital, a stone’s throw from Kay St Germaine in Tabarre.
“When he first arrived, you could see the curiosity of the other parents as to why we would pay so much attention to Olsen,” Heraty says. “He loves to sing and is very responsive – particularly to ‘Old McDonald’. So much so, that he got the nickname ‘Quack Quack’. Gradually, people began to realise that children like Olsen can respond and do deserve care and attention. Everyone in the hospital began asking for ‘Quack Quack’. Olsen has really educated parents and hospital staff about disability. I’ve seen the attitude of doctors change after working with Olsen. That’s a real cause for hope.”