Bali is place of constant sound. Rejoicing roosters punctuate the days and amorous frogs take over after dark. Gamelans and prayers weave scarves of resonance in the darkness. The hum of traffic underlies the shouts of playing children, the barking of dogs, the ringing of hand phones. But many Balinese have never heard these everyday sounds. They live in the silent world of the hearing impaired or profoundly deaf.
Typically, tropical countries have higher rates of deafness than more temperate lands. Children are more prone to high fevers and infections which can cause permanent hearing loss. So can head injuries and motorcycle accidents. But perhaps the greatest cause of deafness here is genetic. A congenital recessive gene for deafness was already widely distributed in the Balinese population here before the Dutch arrived. The Dutch carry the same mutation, which increases the occurrence of hearing impairment. Because it’s a recessive gene, two hearing parents can have hearing-impaired children.
Bali has five poorly funded government schools for the deaf and disabled (SLBB). Many of the children have been abandoned and become boarders, or prefer to stay at the school for social reasons. The schools lack facilities and the teachers lack resources –- they have limited specialized training and/or equipment to deal with these children. Until recently the classrooms were bare and none of the children had hearing aids. These children were assumed to be deaf because they couldn’t talk -- none of them had ever had their hearing tested. Although Indonesia has a form of sign language, many teachers don’t know it so it’s not commonly taught to the children. No one knows for sure, but an educated guess places only about 10% of the island’s deaf children in such facilities, modest as they are, with the others being kept at home. In Bali as in much of Asia, a physically or mentally disabled child is regarded as shameful to the family, and is often kept out of sight without any kind of support.
Adrienne Oberoi, the hearing daughter of two deaf parents, volunteered to talk to the parents of the deaf children at SLBB in Jimbaran. “I tried to give them an idea of what it was like to have deaf parents, and what the deaf are capable of,” she says. “They had so many questions; there are no resources for them. The visit made me realize the strides we’ve made in the West. The public perception of deafness here is similar to what my deaf mother and grandmother experienced early in the last century.”
Lumina, a private Indonesian company, established a hearing clinic in Denpasar in 2003. Since then, Lumina’s programs have expanded to open the curtain of silence for hundreds of Balinese. Business partners Nick Liem, an Indonesian-born Canadian, Vikki McKay, a Canadian hearing expert, and Jim Renshaw, owner of AIM Companies Canada, brought the first batch of hearing aids to Bali in early 2004. Now all of the children in four SLBBs have had their hearing tested. (Those in Gianyar will hopefully join the program soon.) Of the 450 children on the caseload, 250 have been fitted with hearing aids; the other 200 are profoundly deaf. YKIP, a Bali-based foundation that assists children in need, sponsors the cost of ongoing support, batteries and earmolds. YKIP also supports a wide range of other hearing programs in which Lumina is involved.
“It was clear that we needed to start seeing children when they were much younger,” says Vikki, who has worked in audiology sine 1988. “The auditory-verbal language system closes down at about age 10. Deaf children can’t learn to speak after that, so it’s essential to start working with them as young as possible, preferably before they are one year old.” So Lumina and YKIP started Sushrusa in Denpasar, a preschool for hearing-impaired children. Each child is tested, provided with a hearing aid and taught a total communication system which includes sign language, lip reading, speech and expressive language. “If we can begin teaching the kids young enough, then with good care and interactive parents, many can learn to speak,” Vikki points out. After preschool, these children enter the SLBB system, and Lumina is developing a program for children and parents to access specialized services for education and social support. This includes simple sign language books which will be available early in 2010.
If children learn sign language, it’s important that the whole family learn it too, to establish full communication between all family members. There are benefits to learning to sign; normal hearing kids who learn to sign language first are able to learn other languages more easily. Even babies can learn to communicate with sign language before they can speak.
“The deaf are socially isolated in ways that hearing people can never understand,” Adrienne points out. “As a child, I was the sole interpreter for my parents. I used sign language to convey conversations or things that were happening on TV, made medical appointments and called in sick for them. I know how much information they missed; deaf people never receive full information. People watching us signing as a family assumed that I was deaf too, and treated me differently.
“I met a young man of 23 at the SLBB dormitory. He had a job washing dishes at a five star hotel and was very pleased about it, as if that was the best that he could expect. Deaf people here have no role models -– there aren’t even any deaf teachers at the schools for them -- and their expectations of what they can achieve are low. He never went back to his village because he felt that his classmates were his real family. There was no one he could talk to at home. His social community was the hearing impaired. Although they can’t communicate fully, they understand each other.”
There are currently no statistics on the number of hearing-impaired people in Bali. The Indonesian government has a country-wide hearing program aimed at improving hearing health, including infant screening. But this initiative, together with Lumina’s, is only reaching a small fraction of the children in need. Lumina’s work, supported in part by YKIP, will augment and enable the government programs by bringing access to equipment, transportation and education. Lumina will collect data and establish a centrally managed databank at Sanglah, providing statistics on Bali’s hearing impaired and deaf population for the first time.
Nick, a German-trained engineer, has designed a sound booth (a specialized hearing testing room) made from locally accessible materials. A large sound booth has been built to international standards and installed at Sanglah, four smaller ones at SLBB schools and three at the Lumina clinic in Denpasar. These sound booths are unique in Indonesia, and include a modular, collapsible model that can be built off-site and constructed in regional hospitals. Lumina plans to launch a broad-based infant screening program sponsored in part by YKIP in 2010.
As Nick and Vikki deepened the scope of their projects in Bali, they realized that the young adults leaving the government schools had nowhere to go and no skills with which to support themselves. Deaf children and adults are very vulnerable. Many have no family or resources and often end up on the street. Because they can’t communicate, they are easy targets for abuse, human traffickers and sexual predators.
Nick and Vikki conceived an ambitious project to build a training centre to create sustainable livelihoods for the deaf on Bali in the village of Catur on Kintamani. The project goals are to train deaf young adults in the humane and environmentally sustainable breeding and raising of pigs for the market, and later for meat and leather production. Associated skills will include farm planning and administration, waste management, construction, animal husbandry, fodder cultivation, accounting, veterinary skills, artificial insemination, fish/eel/frog farming, health inspection, natural fertilizer production, methane gas production, farm tours, butchering, meat processing, leather production and others.
The teaching/training component will incorporate recognized trade certification. A Yayasan is being established to administer this and other projects. The pig farm will be a viable business with all profits supporting the project. The development of the pig farm will provide training plus profitable and sustainable business opportunities for participants so they will be able to live independently. There are also many associated spin-off economic opportunities for the community. Beneficiaries of the project will be selected from young adults graduating from the government schools for the deaf, and the 1800 villagers in the Catur area. The community of Catur will benefit through access to trades and training, jobs and a more robust local economy.
One hectare of land has been contracted for 50 years in Catur. A RAM pump (requiring no fuel) was installed to bring river water to the construction phase of the project and to supply villagers living near the site who previously had no easy access to water. Electricity has been supplied and construction begun on the administration/training building which will be followed by dormitories and pig stalls. A large rainwater catchment roof/cistern system will supply the water for washing the pigs and cleaning the stalls. The pig waste will be channelled into at least six anaerobic digesters which will produce methane gas to meet lighting and cooking needs for the project, plus compost for the gardens. The pigs will be raised humanely and given chemical-free feed, much of it locally produced. You can see why I like this project.
Lumina means light. We can all play a role in illuminating the darkness, and bringing sound to a silent world. The journey of supporting Bali’s deaf to becoming functioning members of their communities will be long and complex. There are many facets to Lumina’s work, and many opportunities to become involved.
It costs about US$ 125 per year to support a hearing impaired child who has hearing aids, and about $250 each to buy one hearing aid. Contact YKIP at (361) 759544 or info@ykip.org Sponsoring a hearing-impaired child to attend Sushrusa preschool costs $300 a year; call Ibu Kadek at 262035. To become involved in the skills training facility in Catur either as a volunteer or a donor in cash or kind, contact hlliem@hotmail.com And if you have any information about teacher training for the deaf, please contact me at bali_cat7@yahoo.com
Dragons in the Bath, a collection of Ibu Kat’s stories,
is now available in paperback from
* Kuta : Dijon
* Seminyak : Ganesha at Biku
* Ubud : Ganesha Books, KAFE,
Ubud Music, Threads of Life,
Eve Body Treatment Centres
