The sound of one-hand clapping

Trisha Sertori ,  Contributor ,  Renon   |  Thu, 11/05/2009 11:40 AM  |  Surfing Bali

Deafness in Bali is common. In one village up north, more than 50 percent of the inhabitants are deaf. They know only too well the silence of one-hand clapping. The Balinese, like the Dutch, have a recessive gene that can cause deafness in children, despite both parents not being hearing impaired.

Understanding the world of the deaf was thrust on Putu Indrawati 13 years ago with the birth of her son, Andika.

“He cried at birth like all babies and was walking well at two years of age, but when other babies start to talk at around nine months, Andika did not. He was still not talking at two so I took him to a specialist. He said maybe he was not talking yet because he had been born a couple of months premature.

“The doctor did not check for deafness, but looked in his ears to see if they were dirty. And that was all,” says Putu of her first child’s undiagnosed deafness.

“I was confused and felt he needed to be checked again. He still could not talk. He was found to be severely deaf. It was suggested we try a hearing aid, but at that time they cost US$2,500.

“Other people with deaf children had cars to sell or things like that. We didn’t have anything,” says Putu who then began to teach her child at home with no resources and no where to turn for help.
“I had no idea what to do. For two years, until he was six, I taught
Andika and then, at six years of age, he went to the school for the deaf,” says Putu.

Bundles of laughter: Children from Denpasar’s only kindergarten and playgroup for the hearing impaired are shown with their teachers. JP/J.B.Djwan

Deaf children now born in Bali can be diagnosed within days of the birth. A local company, Lumina, set up a hearing clinic in Denpasar in 2003 and now visits hospitals, schools and villages with its mobile hearing unit so youngsters suffering deafness can receive treatment at an early age.

All research says the earlier deaf children are fitted with a hearing aid, and taught lip reading and signing, the better they learn to speak and interact with their family and community.

The company also established a kindergarten for the deaf, where Putu now teaches. With her deaf son, she had decided to undertake professional training and studied special needs teaching in Sidakarya for two years.

“Sushrusa was opened in 2007. The Balinese name means ‘learning to hear’. We are the only kindergarten and playgroup for deaf children....

“We find when kids don’t go to school until they are six it is so much harder when they start this learning late. They are confused in their environment and not all teachers know how to teach deaf children,” says Putu.

Lumina, local writer Catherine Wheeler, Canadian hearing experts Vikki MacKay and business partner Nick Renshaw of AIM Companies Canada, are working together to create a sign language manual for parents of deaf children.

“If children learn sign language, it’s important the whole family learns it too, to establish full communication between all family members....,” says Wheeler.

 And while Lumina and AIM have tested children, supplied and fitted hundreds of hearing aids, with additional funding donated through Yayasan Kemanusiaan Ibu Pertiwi (The Ibu Pertiwi foundation for humanity), and all the best research says the earlier deaf kids are diagnosed the better their lives will be, the provincial government is dragging its heels on establishing additional kindergartens and playgroups for the deaf.

“In the future, we want to see more kindergartens and schools for the deaf. But under the government bureaucracy it was very difficult to start up a school like this. We had to pay huge fees and we do not yet have government support. So every time people want to start schools like this they have to pay and pay and pay,” said a disillusioned Putu.

She suggests that dusting off disability under the carpet may be cultural. On discovering her son was deaf, Putu said she felt embarrassed that his, or her, Karma was out of whack.

“But as I learned more of the medical facts of deafness, I saw it may have been caused by marrying my cousin, it could have been Rubella, or I might have married too young. I advise girls now never marry anyone in your family.”

Irine Evans, the mother of Bradley, one of the children at Sushrusa, agrees that Bali’s habit of hiding its disabled is cruel for the parents of these marvelous children.

“Bradley is my miracle child. We had been married for five years before I could conceive. At seven months, I had pre-eclampsia. My doctor in my weekly checkups said ‘we are taking him out now. The cord has ruptured,’ Bradley was in a humidicrib for four months,” says Irine.

“At nine months I knew something was wrong. The neighbors played really loud music and my little baby slept right through it. He also had a heart problem, so we decided to wait until he was one year old and flew him to a Surabaya Hospital for testing. He has deafness in the 100 to 110 range. That is one step below total deafness.”

Irine didn’t find a single pamphlet, when she searched across Bali for information, guidance, support, books or magazines on deafness.

“This is why I say it is hard to get help from my own people. They just don’t care – or don’t seem to care.

“I turned to my father-in-law in Canada for help and through him I sourced a DVD that taught me everything. My boy at just four years old can read and write and can sign. And now he comes here to school...,” said Irine as young Bradley wrote the alphabet, laughed and jumped on a swing with his mates.

According to Wheeler, a donation of just US$125 can support a hearing-impaired child and $250 each year suffices to buy a hearing aid. Rather less than the $2,500 Putu that, 10 years ago, denied Putu’s son a hearing aid.


For more information on sponsoring a hearing impaired-child contact info@ykip.org.

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