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Hope For Deafblind Children

February 10, 2007
What does it mean to be deaf, blind and dumb? ‘Society’ writer Samuel Otieno spoke to mothers with such children on how they cope.

A few years ago, Esther Zawede, a resident of Kisumu, gave birth to a healthy baby.

At least that’s what it looked like at first. But it later emerged that her child, Stephen Kintu, could neither see nor hear. Her in-laws believed that condition was a result of unfulfilled rituals back at home.

“My in-laws said Kintu’s condition came about because my husband failed to perform the luvale rituals back at home,” says Zawede.

Despite his disability, Kintu grew up well. But when it was time for him to enrol in school, Zawede’s husband resisted it, saying it was a waste of time.

“My husband did not want Kintu to go to school,” she says. “And as a result, Kintu hated his father so much that they could not sit in the same room.”

In 2001 after several confrontations, Zawede separated with her husband and she had to raise Kintu by herself.

Zawede sometimes wondered how the ‘unfulfilled rituals’ caused her son’s condition. She was in doubt until she came face to face with other similar cases, some even worse.

“When I met other children with worse cases than Kintu, I realised that his case was not a curse but a disability,” she says.

Deaf, blind and dumb girl able to take care of her personal hygiene

And in Asembo Masamba village in Nyanza Province, Mrs Jane Dao is grappling with the burden of caring for her 11-year-old deafblind daughter, Dorcas Adhiambo. Her greatest challenge is how to communicate with her deaf, blind and dumb daughter.

“I cannot tell when she is unwell and I have to rely on visible symptoms such as vomiting or body temperature,” says Dao. “At times she cries holding her stomach and I assume she is hungry.”

Surprisingly, Dorcas uses her sense of smell to register the presence of people around her. She has a strong sense of smell that enables her register at least 20 people for a period of about one year.

“Despite Dorcas’ disability, she is able to take care of her personal hygiene. She knows her right time to bath and does not need supervision,” says her mother.

“All you have to do is place a basin of water at around 4pm everyday at a particular spot and she will come pick it. She has mastered her way to the bathroom and can bathe all by herself. Dorcas has a special seat which when placed there, she knows it is dinner time,” says Dao.

Although she cannot see, hear or talk, Dorcas can distinguish between day and night.

“During the day, Dorcas can go for short call at the far end of the compound while during the night, she cannot go beyond two metres from the house,” says Dao.

Luckily, Dorcas’ parents enrolled her at the Maseno School for the Deaf, where she learnt a little a special sign language referred to as tactile language.

The language is specifically designed for the deafblind. It includes normal sign language but the receiver has to touch the hands in order to establish what words are being spelt out.

Deafblind people are hardly known by many people in the society. Many believe they are the result of potent witchcraft, hence they are isolated from their families, neighbours and the larger society.

Deafblind people face unique challenges in communicating

In the city, they are tucked in secret rooms or in servants’ quarters away from the rest of the family. In the rural areas, some are locked up in dingy rooms or hidden in a dark corner of grass-thatched hovels where others rarely go.

Because 95 per cent of what humans learn about the world comes from sight and hearing, deafblind people face unique challenges in communicating, mobility and receiving information, making them one of the most isolated communities.

Many families are stigmatised by this unique disability, and are reluctant to speak openly about it. In the African society, disability is generally regarded as a curse.

As a result, deafblind people are denied their rights to basic services, such as education and health, especially for their rehabilitation. In some cases, the arrival of deafblind children breaks up families.

—Lilian Teyie and her son Benson M’Mule, 10, at their home in Kima, Western Province.

In a little village of Kima, Vihiga District in Western Province, Lilian Teyie Ahono gave birth to Benson M’mule. He was a normal baby and looked quite healthy. Things looked rosy until the baby was taken home.What made Teyie anxious about his health was the way he could sleep undisturbed for long periods despite the deafening noise from his surroundings.

“After three months, we became suspicious that he was deaf and blind when we realised that he could sleep even in a noisy place,” says Teyie.

She took her son for check up, where doctors confirmed her worst fears – her son was deafblind.

“I felt as if the whole world was crumbling under my feet,” she says. “I thought to myself what forbidden sin had committed to deserve such punishment?”

Mother relies on guesswork to communicate with son

Teyie knew that a deafblind child was usually born when parents annoyed the gods. Relatives from her maternal village were quick to advise her to seek help from a traditional medicineman.

“They told me that I had been bewitched and that if I wanted all to be well, the only way out was to consult a traditional healer,” she says.

Others went as far as convincing her that dead relatives were haunting her and that she should seek help from a special diviner.

Like Dao, Teyie too has problems communicating with her son. She relies on guesswork to determine her son’s demands. But she sometimes misinterprets her son’s messages. She thinks it hurts his feelings but he can’t tell her.

Her son, too, was taken to Maseno School for the Deaf and has started to receive training.

Esther Zawede ‘talks’ to her son, Stephen Kintu, 18, at their home in Kisumu.

“We would be very grateful if we were to be taught how to communicate with our children,” she says.Through Dorcas’ little knowledge of tactile language, she says she would like to pursue education and become a teacher. She says she looks forward to the day she will be able to teach other deafblind students.

Her mother must also learn the language to communicate with her and meet her needs.

“We call on the Government to establish deafblind units in special schools to teach deafblind persons and their guardians on how to communicate with each other,” says Dao.

Access to any kind of services is dismal

Sense International, a non-governmental organisation, has been on a search countrywide to identify deafblind children and enrol them in learning institutions.

The organisation also aims at empowering parents of such children to enable them cope with the demands of their disability.

“Many affected family members are not aware of the potential for deafblind children and adults to lead quality lives and to be active members of society,” says Geoffrey Atieli, the Sense International director for East Africa.

He says the number of people with this condition is not accurately established. Still, most families do not know about deafblindness, let alone how to handle those affected by the condition.

“The number of people who are both deaf and blind, known to have access to any kind of services is dismally small. Our mission is to strengthen services for deafblind people. We do this through partners training them to deliver appropriate services,” says Atieli.

Situation compounded by lack of policies

The lack of services for the deafblind, he says, is compounded by the absence of policies that recognise the unique disability.

Jane Dao and her daughter Dorcas Adhiambo at their home in Asembo, Nyanza Province.

“The services that are available are mainly in the form of education for a few deafblind children, and vocational training for even fewer deafblind adults,” he says.“They are not aware of the extent to which the children can learn in school, and the potential for deafblind adults to lead independent lives”.

Sense International is part of an international organisation with programmes in over 20 countries that work in collaboration with governments, non-governmental organisations and community-based organisations.

Other organisations supporting deafblind persons are the Federation of the Swedish Deafblind and the Christofel Blinden Mision.

The Swedish organisation has been working in Kenya for the past 20 years and is credited with the establishment of learning institutions such as the Kilimani Integrated School, Kabarnet School for the Deafblind, and the Maseno School for the Deaf.

The Christofel Blinden Mision has initiated rehabilitation programmes for deafblind persons who are out of school.

http://www.eastandard.net/mags/society/articles.php?articleid=1143964742

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  1. July 13, 2007 at 2:20 am
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