By Sheryl Ubelacker Health Reporter (CP)
They are known in Creole as “ko kobe,” or “crooked body,” those Haitians shamed and shunned for their twisted or missing limbs, eyes that do not see, brains that move too slow.
But since January’s earthquake, thousands more have joined this band of the socially outcast disabled, the victims of crush injuries and raging infections that led to the amputation of an arm or leg.
“There are so many amputees, I’ve never seen so many amputees,” says Ed Epp, executive director of Christian Blind Mission Canada, an organization that works to improve the lives of people with all types of disabilities in impoverished countries.
Estimates of the number of children and adults with amputated limbs range from 2,000 to 4,000 and as high as 7,000, he says, quoting Handicapped International and Haitian government figures.
“The numbers are all over the place. I would say probably closer to the 7,000 than the 2,000,” says Epp, who recently returned to Toronto from Haiti’s ravaged capital Port-au-Prince, one of many disaster zones he has worked in over the last 24 years.
“I can remember one day we met back to back a four-year-old and 17-year-old and a 48-year-old,” he says, explaining that the two youngest, both girls, were partial leg amputees, while the adult had lost part of one arm.
What’s critical now, say medical aid organizations, is for rehabilitation and prosthetics specialists to reach the throngs of these newly disabled and help them.
Indeed, scores of physical and occupational therapists from Canada and other countries have made their way to Haiti and continue to arrive to volunteer their services, but their numbers are still too few to meet so great a need.
“Our rehabilitation infrastructure in the country was very weak to start with,” says Canadian physiotherapist Shaun Cleaver, who worked at the Hospital Albert Schweitzer for three years during the last decade and returned there in early February to co-ordinate rehab services. “There were only a few clinics, most of the acute-care hospitals did not offer rehabilitation.”
The Albert Schweitzer comprises an 80-bed acute-care hospital in Deschapelles, about 65 kilometres northwest of Port-au-Prince, plus three “dispensaries” that provide primary care and community development services for about 300,000 people in a sprawling rural area. But with the capital in shambles, tens of thousands of homeless and often injured Haitians have migrated into the countryside, including the Deschapelles area.
“For the most part I’d say our rehab needs are quite straightforward, but what’s not straightforward is being able to get the services in place for this huge wave of people who have come at one time,” says Cleaver.
For those who have had an amputation, the first priority is to make sure the bottom of the residual limb heals cleanly and in a shape that makes it fit comfortably in the socket of a prosthetic arm or leg.
Of critical importance is getting the person up and moving to prevent bed sores and potentially life-threatening illnesses that arise from immobility, such as untreated urinary tract infections and pneumonia, says Rob Balogh, a physiotherapist at Toronto Rehab who volunteered his services in Pakistan after the 2005 earthquake.
“They have to relearn life without a limb,” stresses Balogh. “How to handle crutches, how to handle a walker, how to handle their prosthetic, how to make sure their prosthetic is not causing pressure sores, making sure they’re doing the proper exercises.”
Cleaver says there’s a big push now in Haiti to set up facilities for manufacturing prosthetics in-country. The aim is to fit all amputees with at least temporary artificial limbs and to teach them how to wear and use them properly. Ideally, over time, prosthetics shops would produce more permanent artificial limbs tailored to each individual.
However lofty and heartfelt that goal, aid organizations and rehabilitation specialists know they are up against some pretty tough barriers.
“There’s a huge stigma on people with disabilities,” says Epp, whose organization has been in Haiti since 1976, working with two hospitals and running schools for physically disabled and mentally challenged children. Both schools collapsed during the quake.
“It’s easy to stereotype them as cursed or – and there was that – less than human,” Epp says of pervasive attitude in Haiti towards the disabled.
“And they’re still being hidden. We walked through one of the (homeless) camps and we’re … trying to find people with disabilities. And we had a hard time finding them, even though we knew they were there.”
It wasn’t until word went out that Epp’s group was offering rehabilitation services that amputees and others left permanently injured from the quake emerged from tents or other makeshift shelters to seek care, he says.
Cleaver agrees the stigma of disability is so ingrained in Haitian culture that people worry more about appearing “normal” than they do about the loss of physical function related to a missing limb. And that attitude even colours how they view prosthetics, he says.
“So it’s been a priority of our patients that they look like they have a normal leg, and whether or not that allows them to do a lot with it is less important than it making them look normal. The irony is that the ones that get a prothesis are the lucky ones. What I see far more is those who are amputated and then don’t get one.”
Hospital Albert Schweitzer began making prosthetics late last month for the patients its serves, while other production sites are being proposed elsewhere, primarily in Port-au-Prince.
But Epp worries that no matter how well-intentioned, such a piecemeal approach isn’t the way to go.
“I heard that 32 organizations are ready to set up workshops to build prostheses,” but there aren’t enough skilled technicians to make them properly, he says. “We’re trying to co-ordinate people and say, can we build two or three really good ones (manufacturing facilities)? Because otherwise you have a little church group that means well but starts to carve them out of wood.”
Without prosthetics, the future of Haiti’s newest amputees will be grim, predicts Epp, allowing that he’s “seen too much” during his years of travelling to countries reeling from natural disasters or war.
“It’s that whole cycle of poverty and disability. Because someone has to pay for them and look after them and provide food. And if they’re not contributing to the family, then they’re just a drain.”
“You’ll have a society of a lot of beggars.”
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