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A Home for the Unwanted
Cerebral palsy victims are some of our most neglected citizens. But a home in Depok provides the care they often lack from their families.
Report Titania Veda
n the far corner of a house in Cimanggis, 40 kilometers from Central Jakarta, a boy walks by, pushing an empty wheelchair. His gait is rather strange, his legs twisted at odd angles. He walks carefully, relying more on the wheelchair than pushing it. The quietness is sporadically shattered by screams. Short and high in pitch, like a frustrated toddler grappling for words that refuse to form. In its sprawling compound on the main road of Jalan Raya Bogor, Wisma Tuna Ganda houses 30 children and adults with various forms of cerebral palsy and autism. Most have lived here since they were toddlers. Fifty percent are over the age of 30; the oldest is 40. Kristanti, the deputy head of Wisma Tuna Ganda, explains: We treat residents for a maximum of 20 years, but some stay longer because their families are hesitant to take them back or have abandoned them completely. Where else can they go? So they become our responsibility. In a bright room with open windows, residents sit on safety chairs playing with colorful sets of shapes. Most stare emptily into space, saliva dribbling from their lips. Rusdi, the only one with coherent speech, answers in a slurred voice when asked his age and the name of his father. Blind, the 36-year-old holds a forefinger to his left ear whenever he speaks, as if straining to hear. The institution does not provide residents with a formal education. It is enough to teach them how to interact, understand who they are, and daily survival skills like putting on clothes and feeding themselves, Kristanti says. A caretaker is teaching Icha, the youngest resident, how to play with blocks. She does not look like she was born with a defect. But she is autistic and has yet to walk or speak at 3 years of age. She responds to her own name, says Kristanti with a smile, which means at least she understands who she is. Polo shirts, T-shirts, shorts and pants hang in the garden in neat rows under the morning sun. A man sits at the end of the hall, his legs crossed, eyes closed, swishing his head from left to right. There is a big grin on his face. On approach, gray hairs can be seen on his head. Fikri is one of the older ones. He is mobile but blind, says Kristanti as she rubs Fikris head. At times his hands flutter up, as if playing an imaginary piano. They live in their own world, Kristanti adds. Neat white tiles dominate the physiotherapy room where chaos reigns. The floor is littered with bodies, prone and writhing. Three caretakers in dusky pink uniforms heave a child up and strap her to a standing frame. To the left, two children hang on frames like forgotten puppets; their legs and arms bound to splints of padded steel to keep them from stiffening and bending. The children wear heavy orthopedic shoes so they will not develop flat feet or curling toes. They are strapped to boards with cloth straps, hands hanging limply above their heads. For an hour they rest that way to straighten their muscles and practice standing. At first, they were angry and would struggle against it, says Rita Komala who has been a physiotherapist and caretaker for 11 years. But now they have gotten used to it and some can fall asleep. The room is clean and the physiotherapy equipment new a noticeable difference from the past when there was an absence of generous donors. Prior to funding, treatment was not maximal due to the high cost of equipment for therapy. Shoes for preventing flat feet cost Rp 2 million, comments Rita. It is hard to tell the boys from the girls, or the men from the women. Everyone has short hair, cut off for convenience, and wears a T-shirt and pants. Their names are written in permanent marker on their clothing. Rizka,
on the middle standing frame, flashes a big grin. She has sharp features, like a bird. A commotion occurs in the middle of the floor. Ribs jutting out of his thin skin, a tall teenage boy is being undressed by caretakers. He has relieved himself in his pants and they are removing his adult pampers. They turn him over to powder him; his pelvic bones are visible. One caretaker squeals upon seeing his erection. The 17-year-olds pimply face remains expressionless. The caretakers laugh off the incident, quickly dressing him and strapping him to a chair. A napkin is placed under his chin like a bib. He leaks at both ends, jokes a caretaker. Like a tap, says another. A caretaker takes hold of another child and sits her down on a padded wooden seat. They have to learn to sit, says Kristanti, so their spines can be trained. Susan, she says pointing to a child with painfully thin and distorted limbs who is lying on her back, cannot be trained to stand because her legs have become too spastic. If we force it, her legs will break. Lying stiff on the corner of a thin foam mattress, Vivi, in lollypop-pink stripes, blinks her large eyes and grunts. She wears splints, except on her right arm which was injured in a wheelchair accident. When Vivi was born, she was a healthy baby who had the chance to run and speak, says Rita. She succumbed to cerebral palsy at 18 months. Once everyone is strapped into standing positions, seated or stretched straight on the mat, the room falls quiet. Sounds from a soap opera blare from a television set. No one pays attention to it. The caretakers sit around the room and joke with one another. Renni, who has regularly visited the home since 1993, comes bearing snacks. Renni went to physiotherapy school with Rita and is a freelancer now. She comes to volunteer for a few hours every week and says she feels something is missing when she does not. How are you, Ika? she says as she
Cerebral Palsy Causes, Signs and Symptoms
The term cerebral palsy refers to any one of a number of neurological disorders that appear in infancy or early childhood and permanently affect body movement and muscle coordination but dont worsen over time. Even though cerebral palsy affects muscle movement, it isnt caused by problems in the muscles or nerves. It is caused by abnormalities in parts of the brain that control muscle movements. The majority of children with cerebral palsy are born with it, although it may not be detected until months or years later. The early signs of cerebral palsy usually appear before a child reaches three years of age. The most common are a lack of muscle coordination when performing voluntary movements (ataxia); stiff or tight muscles and exaggerated reflexes (spasticity); walking with one foot or leg dragging; walking on the toes, a crouched gait, or a scissored gait; and muscle tone that is either too stiff or too floppy. A small number of children have cerebral palsy as the result of brain damage in the first few months or years of life, brain infections such as bacterial meningitis or viral encephalitis, or head injury from an accident or child abuse. Source: US National Institute of Neurological Disorders and Stroke
high-fives Rizka, whose hands are tied above her head. The 17-year-old beams beautifully, her mouth filed with sharp, black stumps that were once teeth. To her left, a plump girl grunts, laughs and shakes her head. The caretakers crowd around Renni and eat her offerings. Rizka was so pretty when she was younger, recounts Rennie. But once she started menstruating, and through lack of care, her teeth have gone bad. Popping a peanut into her mouth, a caretaker speaks of Nano, who was left in a dumpster in Ancol, North Jakarta, when he was 5. He will always yell for food if he sees any, she laughs. Nano is now 22. Many parents just leave them, says Kristanti. Some move houses without telling us their new address. Most never ask about their children. Sometimes when we feel a child needs their parents, we even pay for the parents to come here. An hour later more children are carried into the physiotherapy room. These are the ones who have finished their lessons next door. The caretakers busy themselves by massaging baby oil onto the atrophied limbs of the newcomers and joke with the children. Rizka and her two friends are released from their standing frames and left to roam the floor, their leg splints still attached. Little yelps and mini-screams are heard around the room. It is hard to tell whether the children are expressing pain, boredom or pleasure. Rita and Rennie dote on Icha, their backs to Vivi in the corner. Vivis forehead turns lobster-red when she wails. Leave her, she is only seeking attention, says Renni. Icha is cute so everyone hugs her and plays with her, says a caretaker. No one hugs Vivi. Vivis cries eventually brings a caretaker over to remove her splints. Once freed, her left arm bends inward and hardens. Her legs jerk shut. With emaciated limbs she resembles a sparrow with broken wings. They cannot move so their muscles athropy, their limbs getting smaller and smaller, Renni explains. Rizka, seeing the snacks near the mat, pulls her body along with her arms to take a crisp. She chews quietly. Crumbs fall. Icha, the smallest, strapped to one of the standing boards, hangs like a cartoon character with her upright ponytail shooting out of the top of her head. Slightly cross-eyed she has a look of constant awe. She smiles and laughs at a caretaker who sits and dangles a camera phone in front of her. Dani, an apple-cheeked girl with gorgeous dark eyes that disappear when she smiles, bangs her body against the standing frame next to Ichas. Beside her, Putri, mouth agape, is silent and peers passively from behind her
> Continued on C2
Standing frames are used to keep the bones of cerebral palsy victims at Wisma Tuna Ganda strong, stretch tight muscles and promote normal bodily functions like digestion. JG Photos/Titania Veda
