The Burden of Caring for Haiti's Disabled Children
Feb 2, 2010 – 11:17 AMREADING THIS NOW
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PORT-AU-PRINCE, Haiti (Feb. 2) -- On a small piece of cardboard just footsteps away from Haiti's crumbled presidential palace, Lucienne Kabatis kneels by her son Kimberly, swatting the flies away from his face, one after another. The 12-year-old boy is severely disabled, unable to talk or walk."After the earthquake," Lucienne says quietly, "everyone told me to leave him behind."
She could not.
The Kabatis family is among the estimated 200,000 families left homeless since the earthquake struck this island nation three weeks ago. The challenges faced by Kimberly's mother foreshadow what lies ahead for many parents of disabled children in Haiti.
Emily Troutman for AOLKimberly Kabatis, 12, developed mental and physical disabilities when the meningitis he contracted as a baby went untreated. His parents are struggling to care for him after Haiti's devastating earthquake.
Kimberly appears to be only 6 or 7. He contracted meningitis as a baby. The illness went untreated, and he developed profound mental and physical disabilities. He visited the hospital more than a dozen times but never received an MRI, nor a diagnosis, his mother says."They never told me what he has, and I had to pay for everything they used to examine him, even the gloves," Lucienne says.
Continuing care, such as physical therapy or regular assessments of Kimberly's health, were simply out of reach. Lucienne isn't sure if Kimberly can see or hear.
"I think he can't see at all. Or maybe, he can see," she says, then pauses. "But when he looks at me, it's like. ... He looks so far away."
Dr. Colleen O'Connell, a Canadian physician and rehabilitation specialist, works with Healing Hands for Haiti. She estimates at least 10,000 Haitians were disabled by the Jan. 12 earthquake, including 4,000 amputees, half of whom may be children. There are no exact numbers, but many of the disabled are also orphans.
"Before the earthquake," O'Connell says, "it was no secret that orphanages were filled disproportionately with the disabled."
Still, she notes, many parents like Lucienne Kabatis have shown a great deal of commitment to their disabled children, even though they create a survival disadvantage for the entire family in a country where poverty already was acute. In 2001, the most recent year for which data is available, the United Nations estimated almost 55 percent of people in Haiti lived on less than $1 a day.
Emily Troutman for AOLLucienne Kabatis, Kimberly's mother, isn't sure whether her son can see or hear. "When he looks at me, it's like. ... He looks so far away," she said.
The burden of caring for children, and particularly the disabled, falls almost entirely to mothers. Lucienne is the primary caregiver to four sons. Kimberly lays on a piece of cardboard and small carpet in this camp of nearly 1,000 in Champs de Mars plaza. Lucienne erected two makeshift walls to protect him during his seizures and to prevent him from being stepped on by others.The men in Lucienne's life provide little help. Her husband, who survived the quake, spends his days on the streets but doesn't contribute significantly to the family. "He's always on the streets, doing nothing," Lucienne says. Peterson Kabatis, one of Lucienne's other sons, was briefly employed as a custodian but lost his job.
Feeding, cleaning and protecting Kimberly is more complex now than ever before. Lucienne knows it would have been easy to abandon him after the earthquake. "No one would have noticed if he was there, crying in the rubble with all the others," she says. "I could have left him so many times, but I never did it. I never did."
The societal stigma is usually worse for disabilities that began in infancy like Kimberly's, O'Connell says. However, she is hopeful that the increase of disabled people in Haiti could mark a sea change in the nation's cultural response to the handicapped.
Emily Troutman for AOLLucienne, holding Kimberly, is the primary caregiver for her four sons. Feeding and cleaning Kimberly have been especially difficult since the quake.
"This may be an opportunity for better integration," O'Connell says. "But meeting the needs of the disabled is going to require a massive effort on behalf of the international community."Healing Hands is working in partnership with Handicap International to build a sustainable infrastructure of continuing care for the disabled. Their primary challenge will be training local staff to provide the quantity and quality of assistance that Haiti has never seen before.
For now, Lucienne struggles just to acquire enough food and water for Kimberly. But in some ways, she says, caring for him is easier now that the family is living in the streets. Like many mothers of disabled children, Lucienne was essentially forced into the isolation of their home for the past 10 years.
"At least," she says, "we're not alone anymore."