Spasticus Autisticus! – Haitian Paralympians Speak Out


HSG, London, 10 September 2012

Haiti’s first ever Paralympians returned to Port-au-Prince this week hoping that their participation and the attendant publicity, in Europe, if not in Haiti itself, might be one more step in transforming attitudes to disability in Haiti.

“Disabled people are treated very, very badly in Haiti. When you walk down the street, it’s like people want you to get back inside your house. When you have a disability, it’s like your life is over,” says Nephtalie Jean-Louis, an F-57 javelin and shot put competitor.

As if to prove the point, Nephtalie, a polio victim at just eight months of age, arrived in London with her two colleagues, Josué Cajuste, an F-42 javelin and shot put athlete, nursing an injury caused by a Port-au-Prince tap-tap driver who deliberately took off while she was still trying to board. “They are the worst,” she says. “Often they just refuse to take kokobe – Mwen pa pote kokobe!, they say with disdain.”

Kokobe is the derogatory Haitian Kreyòl term for the disabled – literally, meaning deformed or twisted. It mirrors “Spastic!” the former taunt of British school children, the basis of the chorus line of polio victim Ian Drury’s best-selling disability protest song Spasticus Autisticus! which was a centrepiece of the Paralympics opening ceremony.

The extensive press coverage and public acclaim the Haitian Paralympians received in Britain contrasted sharply with the complete lack of publicity the team and their efforts received in Haiti.

The British public had at least a residual consciousness of the huge numbers injured in the January 2010 earthquake and as such gave particularly vociferous support to handcyclist Léon Gaysli, crippled by the rubble of his home in which he lost all eight of his children as well as his wife. Léon had his own sizeable fan club at the road-cycling track at Brands Hatch outside London in his two events, the 16 km time trial and the 64 km road race.

By contrast, things have, if anything, got worse for disabled people in Haiti over the past thirty months, Nephtalie says, despite so many more Haitian families counting disabled people among their families and acquaintances. “I would love to have won a medal… but it’s more important to change the way they treat people with disabilities in Haiti.”

All three of Haiti’s Paralympians agree that the best way to give disabled people the motivation to challenge perceptions and practice in Haiti is to lead by example. And there is now at least hope that such a journey has begun.

Having raised the money to secure the broadcasting rights for the transmission of the Paralympics in Haiti, The Haiti Dream, a one-year old UK-based charity established to get Haitian athletes to London, finally managed to get some footage onto Haitian television on September 6th.

“It was a technical as much as a cultural challenge,” notes Samuel Plumb, one of The Dream’s press officers. “The differences between their equipment for reception and ours for transmission seemed insurmountable for a time.”

Overcoming obstacles and bridging such divides seems a potent metaphor. But the idea of two worlds, two perceptions may be a mirage. In numerous interviews, many of the British Paralympians noted a hardening of attitudes to disabled people, the appalling inaccessibility of London, particularly its public transport system, and the planned cuts in Disability Living Allowance that had enabled many of them to become athletes in the first place.

As of March 2012, Haiti has an Integration of Persons with Disabilities Law, guaranteeing disabled people certain rights in education, health care, housing, transportation, sports and, not least, a 2% quota of jobs in all companies employing 20 people or more, as well as state entities.

The law follows Haiti’s ratification of both the UN and OAS Conventions on the Rights of Persons with Disability and the vociferous lobbying of the Haitian government’s Office of the Secretary of State for Integration of Persons with Disabilities (BSRIPH) by Haiti’s leading disability advocacy group.

However, like so much else in terms of rights and legislation in Haiti, the law threatens to remain a dead letter unless an urgent, mass education effort takes place. To date, the law has not even been published in Haitian Kreyòl, let alone made available in audio or Braille format.

So if the law seems like a maskarad – a masquerade – to date, it does at least offer the possibility of change through active advocacy. Making disability rights a genuine government priority will be a hard struggle for disabled people and Haitian society as a whole, says Nephtalie.

In the short-term, all three members of the Haitian team have, in the support and acclaim in London, witnessed the possibilities for home from abroad. Josué Cajuste, who recalls having clods of earth thrown at him in the street in Haiti, goes home with a new prosthetic leg, provided and fitted by Otto-Bock, the company under contract to the Paralympics.

In the longer term, the Haitian National Paralympic Committee will have to show the same courage and commitment as its athletes to build a national sports programme for the disabled and more importantly, to campaign publicly and politically for greater support and full equality for disabled people. That, like so much else in Haiti, will be as long and hard a Paralympic 64km road race.

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