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The right to hear, or the right to be deaf?

Is the cochlear implant a medical miracle, giving the deaf the opportunity to listen and speak, albeit with some distortions? Or is it, as many hearing-impaired people themselves believe, the ultimate invasion of the ear, the ultimate denial of deafness, the ultimate refusal to let deaf children be deaf? Shabnam Minwalla reports

It’s a journey that four-year-old Apurva Patil can retrace in her sleep: first an early morning ride on a two-wheeler to the Nashik railway station; then a scramble to bag a seat on the Mumbai train; and finally a short bus ride to Mahalakshmi.

“For a whole year we did this trip twice a week, and even now we visit the Aured centre every fortnight for therapy,” says Apurva’s mother Bhagyashree Patil determinedly. She is convinced that these sweaty, bumpy journeys will eventually lead her little girl from the world of silence to one of sound and comprehension. And already, watching Apurva play in the Aured compound, it’s difficult to believe that she was deaf for the first 30 months of her life.

“I realised something was wrong when Apurva was seven months old and didn’t respond to the sound of Diwali crackers,” recalls Bhagyashree, adding that the doctor suggested a cochlear implant. “We run a small grocery store in Nashik and I felt that we would never be able to raise Rs 800,000. But from the very next day I started visiting trusts, ministers, the chief minister, doctors…”

Fifteen months later, Apurva underwent surgery at Hinduja Hospital in Mumbai -- an electronic device was implanted in her skull and a bundle of electrodes made to bypass her damaged cochlear and directly stimulate her auditory nerves. A few weeks later, the microphone and processor (the external part of the equipment) were switched on and for the first time Apurva could hear birds chirping, cars honking and her mother talking. Today, after two years of therapy, she can carry out a conversation with relative ease.

Apurva is one of about 4,200 recipients of cochlear implants in India. But, although many of these stories have equally happy endings, cochlear implants continue to generate controversy and uncertain reactions. Advocates of the implant say that it works much better than a conventional hearing aid because it doesn’t merely amplify available sounds, it picks up frequencies that would otherwise escape the damaged cochlear. Critics however believe that the surgery thrusts the child into a twilight world, inhabited neither by the deaf nor the hearing, and full of distortion.

“When parents find that their child is deaf, they run from pillar to post praying for a miracle. What’s this if not a miracle? A cochlear implant may not make the deaf un-deaf, but it is a huge opportunity to listen and speak,” says Aziza Tyabji Hydari, director of Aured, an NGO that helps deaf children to acquire spoken language. Mukesh Jadly from Delhi, whose 12-year-old daughter received an implant five years ago, agrees: “My daughter goes to a mainstream school, talks on the phone and has an excellent vocabulary. Of course, there are some things she cannot do -- watch TV, speak a second language. But while we cannot copy God, the cochlear implant is the best option available today.”

Many, like Dr Dilip Deshmukh, disagree. “A cochlear implant does not completely restore hearing to the implanted ear, nor is the quality of sound completely natural,” says the expert on Indian sign language and respected mentor of the deaf community in India. “While some children and adults benefit from an implant, others have benefited very little. Those who make the decision to implant children choose to risk the child’s health. Children with implants are at a 30-fold increased risk of meningitis. An implant is the ultimate invasion of the ear, the ultimate denial of deafness, the ultimate refusal to let deaf children be deaf.”

Indeed, much of the resistance to cochlear implants stems from the deaf community, which asserts that it is a cultural and linguistic minority -- and that sign language, rather than a cochlear implant, is the natural and painless option. “Deaf children learn to be successful everyday without hearing,” wrote Shelli Delost and Sarah Lashley of MacMurray College, in 2000, pointing out that the life-changing decision is usually made by hearing parents for children too young to have an opinion. “It is common for parents to be introduced to a number of audiologists and speech therapists when their child is first diagnosed with a hearing loss, but to never be taken to meet a deaf adult so that they may receive the other perspective. It may never be mentioned that deafness is considered to be a cultural identity for some people, and that implants are seen as unnecessary.”

The deaf community believes that the medical approach to deafness -- that it is a disability that needs to be fixed -- damages the self-image of the deaf child. Moreover, a cochlear implant sets the stage for other complications: a four- or five-year-old who has had no exposure to sound is suddenly expected to function in what must seem like the Tower of Babel. The auditory and speech training that follows an implant often becomes the focus of the child’s routine and identity -- so much so that success is only about mastery over hearing and speech.

“Whenever we attend conferences in the West, there are demonstrations by the deaf community outside the venue,” says Dr Shankar Medikeri, a Bangalore-based ENT surgeon, pointing out that cochlear implants are nevertheless considered standard protocol. “After all, it is the parents who make the decision -- and it is only natural that they would want their children to hear and talk like they do.”

Indeed, the arguments of the deaf community would long have been swept aside were it not for the frighteningly unpredictable nature of cochlear implants, for, after spending anything between Rs 6 lakh and Rs 10 lakh, and devoting long hours to therapy, some recipients never manage to understand spoken language. At best, they can hear and recognise sounds like a car horn or a pressure cooker whistle. Which is why cochlear implants have taken almost three decades to gain acceptability.

“When I started working with cochlear implants, my friends treated me like an enemy,” says Rajesh Patadia, senior audiologist at Hinduja and Aured, who painstakingly adjusts the equipment for the requirements of each child. “The surgery has been performed in India since about 1990, but the initial candidates were chosen badly and the results were poor.”

Who then is the right candidate? People who have become deaf late in life are usually quick to decode signals sent by their implants because their brains retain a memory of sound and speech. So, though a late-deafened adult told a New York Times reporter that his implant “made everyone sound like R2D2 with laryngitis,” it is an undeniable godsend.

When it comes to children who are congenitally deaf, however, early detection and intervention are necessary if they are to become adept at hearing and speaking. “Ideally, the implant should be done between the ages of one and two. But even if it is done before five years it makes a big difference,” says Tyabji Hydari, pointing out that it is a matter of neuroplasticity. “Our neural connections are in place when we are born. But we learn to listen only when the brain is stimulated with sound. There are windows of time when different types of learning occur. The critical period for speech and language development is six months of pregnancy to two years -- and if you lose the critical window you never really make up.” Patadia adds: “It’s like dough. If you use it quickly you can make something good; if you wait a little it gets cracked; and if you wait a lot it becomes as hard as a rock.”

Even if the implant takes place early, children need up to three years of therapy before they can confidently navigate a world full of chatter and clatter. The abilities of the audiologists and trainers are critical at this stage.

Apurva, for example, underwent seven months of therapy in Nashik but only mastered a single word -- Ma. So her mother made the long journey to Aured, where the audiologist began the tricky business of re-adjusting her equipment and the teacher began getting acquainted with the child. “Within a week she had picked up seven or eight words, and now she has become so smart she is ahead of all the normal children in her class at school,” beams the proud mother.

Even when the results are unlikely to be so dramatic, however, Tyabji Hydari believes that cochlear implants are justified. “Why should we only be looking for ‘good’ results,” she demands. “If a seven-year-old has an implant which enables him to attend a mainstream school, make more friends and become independent, isn’t that worthwhile? He may not be able to take part in debates or elocutions, but so what? We believe in reduction of disability for every child.” Dr Medikeri adds: “Sometimes children have a malformed cochlear or certain abnormalities caused by meningitis. In their case, a cochlear implant may be less effective. What is most important is that the parents must be told exactly what to expect.”

Even when the surgeons are less than encouraging, however, parents tend to pin their hopes on the cochlear implant, forgetting that in some cases it may take months, even years, before the child can understand and respond to a simple question like: “How was school?” This can lead to a great sense of frustration and a dangerous delay in language development. Which is why experts like Dr Deshmukh insist that children with hearing loss should grow up bilingual -- comfortable with both sign language and whatever oral language they can pick up.

While this may help in the initial period of adjustment, it’s clear that individuals with successful implants depend more and more on the tiny computer behind their ear. “It makes them a part of the hearing world,” explains Patadia. “They make our lives miserable when a wire breaks or some part of the equipment gives trouble. Because now that they know the importance of hearing, they cannot do without it.”

(Shabnam Minwalla is an independent journalist based in Mumbai)

Infochange News & Features, December 2010