Wednesday, December 05, 2012
SEE THE PERSON, NOT THE PROBLEM
Hope, chance and pride
December 3 is the International Day of People with Disabilities. The cold official words make this Monday sound like a time for tissues and calibrated pity.
Instead it should be a freewheeling celebration of the human spirit, recognition that however extreme the plight the cause is never hopeless, and that chance encounters can change lives. This is something Nyoman Budiarta and his siblings know well.
Their story starts more than three decades ago but we’ll pick it up in the mid 1990s and a casual evening chat in the Bali village of Ubud between a kaki lima (food cart) snack vendor and an out-of-town businessman.
“Why are you working so late?” the customer asked. “To maintain my family,” Ketut Engong replied. “We have many problems.”
The conversation could have ended there along with the sale, but the man told his friend Sandy Harun. Her interest led to Ketut’s house and a searing encounter.
Ketut and his wife Made Kormi did indeed have problems. Three of their adolescent sons had an appalling genetic disorder, severe enough to make many onlookers blanch in distress, questioning the cruelty of nature.
“Unlike many parents of handicapped kids my dad and Mum never hid us away,” said Nyoman. “We were taken everywhere. I’m very proud of them because they were proud of us.”
The boys suffer from osteogenesis imperfecta and no Latin lexicon is needed to understand this is serious and incurable. Better known as brittle bone it strikes few, maybe one in every 20,000.
The short-legged French post-impressionist Henri de Toulouse-Lautrec is believed to have suffered a mild form.
Many lead live lives of almost constant pain as even slight movements can cause cracks. There are various levels – Nyoman and his younger brothers Ketut Budiarsa and Wayan Piadnya are at the extreme end, their limbs shortened and twisted, and in some cases with no bones.
They use wheelchairs and can propel themselves if sitting on a smooth floor. Otherwise they depend on others for mobility.
Sandy Harun was a sinetron (television soap opera) actress who became better known for her private life than her public performances on the small screen.
Her much reported friendship with Tommy Soeharto, the disgraced son of the late president, helped power tabloid sales.
More enduring and relevant to this story is her role as a philanthropist in the lives of Ketut Engong’s family.
According to Nyoman, instead of backing away from the raw harshness of handicapped village boys’ lives and scuttling back to Jakarta, the actress pulled out her purse and funded their education.
The brothers, then aged 17, 15 and 12 had never been to school. They wanted to but no public institution would accept them, though it was clear the lads were smart and artistically talented.
Using Ms Harun’s money they were enrolled at the Suta Dharma International School in Ubud and studied alongside foreigners, much younger and taller.
“I moved rapidly as teachers assessed us,” said Nyoman. “We could already read and write because we’d been taught by our two sisters. (They don’t have the genetic disorder.)
“The first day I was in grade one primary, next day in grade two and then straight into grade three. It must have been a record. None of this would have happened without Ibu Sandy – she changed our lives.
“I never suffered bullying in class or playground, but have done outside. Some drivers get intolerant of people in wheelchairs and try to push us out of the way. There’s still discrimination in the community.”
The house where the men still live with their parents in Kedewatan fronts onto a fast road, unforgivingly narrow. They use the front room to showcase their art under the shingle 3 Brothers + 1. but the gallery is not well positioned for casual buyers or safe wanderings by wheelchair.
The + 1 is the youngest, Kadek Budiana. He’s not handicapped so along with Dad helps his siblings move around in a motorbike sidecar. They’ve held exhibitions but have stockpiled a large number of canvasses. A show in Jakarta next year is being considered.
“We’re reluctant to reveal some of our work because it gets copied,” said Nyoman. “We do the tourist stuff, but many of our paintings express our inner feelings. It’s like selling drugs – we have to keep our pictures secret until exhibited.”
One they were prepared to show was by Ketut, nominated as the brains by his brothers – a statement backed by his English abilities and prize-winning chess skills.
A cosmic eye stared at a clutch of hands, some wielding money. “Don’t look down on us,” he said. “We are not to be pitied, we are human beings just like you.”
Nyoman’s art tends to feature hands and other disembodied parts sprouting wings, offering rich pickings for psychiatrists. Complex, but not dark.
Attempts to get art training ran into the same obstacles as their search for schooling. Eventually they got support from artists including portraitist Kartika Affandi-Koberi.
Their different handicaps make the physical exercise of painting difficult and tiring. Nyoman works on smaller collages positioned vertically – his siblings favor big canvases on the floor.
When he’s not handling brushes Nyoman, 35, works as a volunteer for the Yayasan Senang Hati (Happy Heart Foundation) in Denpasar where he is training to be an accountant. The charity works to ‘bring people with physical challenges out of isolation and into society.’
“Í can’t count the number of times I’ve had broken bones, though I’m OK now,” said Nyoman. “The only medicines I take are traditional Balinese.
“I want to be independent - we all do. We’re adults but we all have to live together, six people in three small rooms, when we should be running our own lives.
“Get to know us. Look at our achievements. We just want to be treated like everyone else. Abilities, not disabilities.”
(First published in The Jakarta Post 5 December 2012)