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Business News/ Mint-lounge / Features/  They’re talking; are you listening?
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They’re talking; are you listening?

Too often we assume that deaf people who don't speak in a familiar way are mentally impaired. We think that if they don't speak clearly, they're not listening

Dildar Dalvi with her second son Ayaan, who is both deaf and dyslexic, at the Aured clinic in Mumbai. Photo courtesy The Aured Charitable TrustPremium
Dildar Dalvi with her second son Ayaan, who is both deaf and dyslexic, at the Aured clinic in Mumbai. Photo courtesy The Aured Charitable Trust

Dildar Dalvi had her first child in Mumbai and then went back to her gaon (village) to be with her parents—her husband lives in Saudi Arabia. That first baby, Aman, was everyone’s darling. One daywhen he was about a year old, the village reverberated to the sound of nearby blasting: We Indians love dynamiting our mountains and valleys to smithereens. Everyone jumped; the baby didn’t react.

Alarmed, Dildar took him to town and had him tested. Aman is profoundly deaf: that means he cannot hear at sound threshold levels of 80 decibels or lower. Just to make that more meaningful, consider that a vacuum cleaner one metre away from you produces about 70 decibels of sound. Aman wouldn’t hear that.

Dildar had no money for treatment but, she says, “I’m the luckiest one!" The testing clinic gave her the number for the non-profit Aured (Aural Education for the Hearing Impaired), at that time the only local centre for auditory-verbal learning, run by Aziza Tyabji Hydari (disclosure: Aziza is my cousin). Aman started therapy right away. Today, he studies commerce at Mumbai’s Elphinstone College.

Aured is based on its founder’s conviction that underprivileged disabled children should have the same opportunities to reduce disability as their rich counterparts. Why should you be able to get a cochlear implant if you live on the 15th floor of a Pali Hill high-rise but not if you live under the bridge at Andheri?

A cochlear implant is an electronic device that provides direct electrical stimulation to the auditory nerve in the inner ear. People who cannot be helped with hearing aids may be helped with cochlear implants. The most basic model costs about 5.5 lakh, plus another 1 lakh for tests and hospital expenses. Unlike hearing aids, which make sounds louder, cochlear implants provide sound signals directly to the brain.

You can’t just implant one and walk away. A trained audiologist has to work extensively with you to teach you to “hear" and respond, and the younger you are, the better you learn.

Aman started with a hearing aid, and got a cochlear implant when he was 8. Dildar has done what most mothers would do: her best for her children. Ayaan, her second son, is both deaf and dyslexic. Aziza told me that more than 40% of deaf children have additional disabilities. Ayaan has a pair of hearing aids, and speaks fluently. He is in class VI in a regular school.

When I was small, I occasionally met a hearing impaired relative who used sign language to communicate. I heard people refer to her as “deaf and dumb" and that is a phrase we hear all the time even now. But deaf does not mean dumb, either mute or stupid. Too often we assume that deaf people who don’t speak in a familiar way are mentally impaired. “We think that if they don’t speak clearly, they’re not listening," says Dildar.

Underprivileged families and communities do not have many opportunities to learn sign language, nor are there special schools in small towns and villages. Too often, if a child can’t speak, he or she is quickly branded the village idiot. Maybe our instant revulsion is really based on fear; after all, most of us will experience a period of physical or mental disability sometime in our lives. And maybe it’s easier to think of someone with a disability as “other" (in the US, it’s a political issue: Is deafness a disability or a culture? But that’s not immediately relevant to a little boy in a village who can’t hear the mountain next door being blown up).

Dildar, now a trained therapist at Aured, is acutely aware of the double burden of financial insecurity and societal contempt. If you’re poor, you’re considered unworthy anyway. If you’re also disabled, what are your chances of ever getting out from under the “Deaf and Dumb" banner?

“They don’t even have money to travel to Aured sometimes," she explains. The staff constantly raises funds both locally and abroad, and the students from well-off families help subsidize the others. Students like a girl whose father is a diamond merchant. Rich doesn’t mean tolerant, however, and her family was quite resistant to any interventions. Her mother brought her to Aured anyway when she was six months old. With intensive therapy in learning how to listen and speak, she goes to a mainstream school now, a happy child in class VIII who speaks clearly.

Aured graduates live all over the world. They are dancers and accountants. One is in her third year studying architecture, and speaks five languages; one is studying engineering in Illinois, US, and plays tabla and sax.

All in all, the centre has 710 children, of whom 550 have implants. 219 are girls and 330 boys. It’s a colourful, bustling place, and if my child were one of the world’s 360 million people with disabling hearing impairment, I would have been thrilled to send her there.

The 2011 Census of India reports that five million people wear hearing aids. The number of people with hearing impairment must be exponentially larger. And when you consider all the people with other physical impairments, and then think about all the ways in which we ignore, misunderstand, and revile them, it boggles the mind.

Let’s not be deaf and dumb about the whole crazy variety of human beings around us. We’re rich, we’re poor, we’re deaf, we’re blind, we’re annoying, we’re sexy, we have an extra toe, we’re everything possible and some impossible things as well.

Recently Aman had to pay a 200 fine because a policeman stopped him for travelling in a handicapped compartment in the train, and, after listening to him speak, refused to believe that he was deaf. Dildar loves telling this story, and doesn’t resent a penny of the fine.

Sohaila Abdulali is a New York-based writer. She writes a fortnightly column on women in the 21st century.

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Published: 20 Sep 2014, 12:03 AM IST
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