Monday, August 10, 2009
ARTICLE - MIAMI HERALD - DISABLED CHILDREN
Posted on Sat, Aug. 08, 2009
In Haiti, abandonment of disabled babies a growing problem
BY JACQUELINE CHARLESjcharles@MiamiHerald.com
Her frail body lies almost motionless inside a rusted metal crib. Her diaper is soiled, but she doesn't cry. At 9 months old, she weighs just five pounds.
The staff inside the Abandoned Baby Unit at the government-run Hospital of the State University of Haiti call her Sarafina. She was dumped on the hospital's front steps: No name, no note.
But doctors know her story all too well -- like the dozens of other special needs babies crammed inside the unit, she was tossed out by parents who could not deal with her mental retardation.
``We find them on the streets, in the hospitals, in sewers,'' Dr. Questly Bonne-Anne said amid the wails of bedridden, diaper-clad children confined two and three to small cribs. ``We guess their age, we give them their names.''
Sarafina, named after a musical where students struggle against apartheid, is among the lucky ones.
In this grindingly poor country, disabled children seem to disappear, hidden away as burdens in a culture where parents count on their children to someday provide for them. Even the healthiest of kids here face starvation, violence and child trafficking, but getting anyone to pay attention to the plight of those who are disabled has been difficult, say child advocates.
No one knows for certain how many disabled children are abandoned each year in Haiti, but child abandonment is a growing problem, says Mariavittoria Ballotta, child protection officer with UNICEF-Haiti.
With an estimated 50,000 children living in orphanages throughout Haiti, those with disabilities get lost in the shuffle.
The government's Institute of Social Welfare and Research (IBESR) -- tasked with ensuring their well-being -- is ill-equipped and under-funded.
And so, many end up at the public hospital, according to child care advocates.
The hospital has been plagued by corruption scandals, striking workers and high turnover of administrators.
``Most of the children in the Abandoned Baby Unit are handicapped, mentally challenged, past the legal age of adoption or have terminal illnesses. This makes it nearly impossible for IBESR to find homes in orphanages for these children,'' said Susie Scott Krabacher, the American philanthropist whose nonprofit Mercy and Sharing Foundation finances the unit.
Tucked away in the pediatric ward behind a frosted glass door, the unit is a cramped 30 feet by 15 feet box. Amid a faint ``mama, mama'' and the screams of malnourished babies with matchstick legs and oversized heads, older children sit and stare in an almost catatonic state.
Geraldine, 13, dressed in a light pink dress, rocks in her crib. Suffering from epileptic seizures, she arrived at the unit eight years ago. Her mother left her at the hospital during a doctor's visit.
Then there is Nena, the oldest. She's either 14 or 16; no one knows for sure. Unable to walk, she's confined to the crib. She eats her own feces and bites the nurses who try to clean her. Once a vibrant child, she's slowly losing her mind.
Frustrated by a decade-and-a-half long struggle to bring attention to the plight of the children, Krabacher has started a letter-writing campaign. Among those she's reached out to: Bill Clinton, former U.S. president and now UN special envoy to Haiti. She's not seeking money, she says, just for him to push the Haitian government to make disabled children a priority.
``We are not asking for anything unreasonable, just for us to be able to use the resources we already have to do something, to make it as normal as possible for these kids,'' she said. ``I want the government to take responsibility.''
Jeanne Bernard Pierre, the director of the IBESR, did not return calls from The Miami Herald seeking comment.
Two years ago, Haitian President René Préval sought to give the plight of Haiti's disabled greater visibility by creating an office for the integration of persons with disabilities. He named a longtime disabilities advocate and university professor to head it.
Michel Péan, who is blind, recently drafted 85 new proposals for parliament to adopt. All are aimed at social acceptance, and in the particular case of children, ensuring they have a right to an education despite their limitations. Parliament is expected to receive the proposals soon.
In the past few years, an effort also has been under way to get parents to understand that children with disabilities can succeed.
Recently, Haitian newspapers heralded the story of 23 disabled high school students who sat for national exams, including one girl without arms who uses her toes to write.
``Progress is being made,'' said Péan, who credits nongovernmental groups and disabilities groups like his Haitian Society for the Blind with leading the effort through advocacy, protests and participation in radio programs. ``During the past 10 years we have been able to fight for the rights of the handicapped. We've done a lot of work. There is still a long way to go.''
Krabacher first learned that unwanted children were being left at the public hospital during a visit 16 years ago. Back then, the unit was a dark, secluded hallway where 17 children, covered in bed sores, slept in cribs with no mattresses.
Eventually, Mercy and Sharing took control of the unit. It expects to spend $55,000 this year buying diapers, medicine and food. It also pays the salaries of the nurses and two doctors.
The problem with unwanted disabled children in Haiti stems from a society that stigmatizes parents who give birth to imperfectly formed children, in a place where few women get prenatal care amid an exploding birth rate.
``We have a society that doesn't accept handicapped children,'' said the Rev. Sadoni Leon, the director of St. Vincent Center for Handicapped Children, Haiti's best-known school for disabled children.
Leon said while it's hard to understand how a parent can discard their baby, ``many parents see the children as a burden they cannot bear, and the only solution is to find a place to abandon them.'' Even at the school, which has produced some of Haiti's most talented artists, there are disabled students whose parents disappeared after dropping them off.
``For a child that is 10 years old, it's traumatic to know that their parents left him here because the parent doesn't want him, can't take care of him,'' Leon said. ``He feels humiliated because when the others go home on vacation he has to stay.''
One of the few centers that cares for and educates handicapped children, St. Vincent was founded in 1945 by the Boston-based Episcopal Order of the Sisters of St. Margaret. Today, its health clinic and school are supported mainly through donations. Parents are asked to pay about $6.25 a month, a fee that is still out of reach for many of the parents of the 350 students from throughout Haiti.
Leon, who is struggling to keep St. Vincent open amid a downturn in donations, says government must step in financially to support special education ``so that families of handicapped children can feel at ease, can feel they have some assistance.''
``As a society,'' he said, ```we need to do our part to ensure that these children don't feel like outcasts.''
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