By Zubeida Mustafa
THEY were women from three generations, their ages ranging from twelve months to fifty odd years. As they met in the office of Dr Tahira Aleem, the audiologist at the Ida Rieu Centre for the Deaf and Blind, I could see that the infant girl’s future hinged on that crucial session. She was profoundly hearing impaired and since she had never heard any sounds since birth she could not speak either. As she snuggled in her mother’s lap, with an endearing expression in her eyes and quite oblivious to her surroundings, the infant appeared to be at peace in her own world of silence. But how long would this peace last? Without the capacity to communicate, she would grow up severely handicapped in her shell of utter isolation.
But thanks to modern technology, the child has a good chance of growing up into a normal, healthy, adjusted person. But this is to be an uphill road for the family and the endeavour had just begun. The first step was to convince the child’s parents that the effort would be worth it. The audiologist was counseling the mother to explain to her the child’s need for a pair of hearing aids and some intensive speech therapy to make up for lost time. The grandmother, a teacher in a secondary school, seemed most concerned. She was, however, conscious of her limitations. “I am a working woman. My health is bad. How can I provide all the care this child needs. But I am more than willing to give full moral support to my daughter to help her rehabilitate her child,” she remarked.
The mother, a young woman in her twenties, hardly spoke and seemed to be struggling to reconcile herself to her daughter’s tragic fate. She had already given up as the pressures of a joint family system had begun to tell on her. The will to struggle for the tiny soul she had begetted was missing. She wanted the grandmother to bring up the infant. As for the father of the child, he had conveniently decided to play truant and skip the audiologist’s appointment altogether.
Dr Tahira Aleem tried to urge the young mother to take up the challenge for the sake of her own little girl. It would certainly be a big test of her maternal love. If she responds, she would transform her baby’s life. Even profound hearing impairment is treatable with the help of a hearing aid. “In the case of this child, she will need speech therapy as well before the speech and language ‘window’ closes,” Dr Tahira advised.
It is paradoxical that in a country where nearly 20 per cent of the population suffers from hearing loss, people tend to push the problem under the carpet rather than admit it and face it squarely. “There is so much social stigma attached to hearing problems that people refuse to do anything about it for fear of being branded a behra. Our society and the media have tended to ridicule a person suffering from hearing impairment. Invariably, a deaf person will be projected as a clownish figure in our plays and media. Not surprisingly, parents who bring their infants to get them fitted with hearing aids insist that the instrument should not be visible. They worry more about their child’s impairment being noticed than about her life being ruined.
Older people refuse to admit they have a hearing problem at all even though it affects their work and social life,” Dr Tahira Aleem observes.
Profound hearing impairment in a child can have serious implications. Audiologists regard a child to be suffering from profound impairment if her hearing threshold is 80 dB (which means she can hear a sound which is equivalent to the noise made, for instance, by a helicopter/lawn-mower). It is important that this impairment is detected early and the child be given hearing aids at once. If she has not outgrown the age when she can still learn to speak, she should be given speech therapy. If this is not done, she will never learn to speak. That is why older children who start wearing hearing aids at a later stage cannot speak and have to use the sign language. It is nevertheless considered necessary to give them hearing aids so that they do not have to live in a world of deafening silence. Theirs is a case of having missed the bus.
The magnitude of the problem is not generally understood. Since an infant with hearing impairment might not be a difficult child until she reaches the stage when the need for communication gives rise to behavioural maladjustment, many parents do not bother to take their child to a specialist. They do so when troubles begin and it is too late. In the four years since she has been working at Ida Rieu, Dr Tahira has come across 400 children with severe hearing loss.
Getting a pair of powerful hearing aids (which can cost anything from Rs 5,000 to Rs 32,000) is just the beginning of a long and arduous journey. The mother has to take on the additional chore of taking care of the aids – cleaning them, testing their working for any distortion of sounds, checking the batteries and changing them when they expire (a battery generally lasts a fortnight and costs Rs 35).
Speech therapy which is crucial for rehabilitation is a full-time job. The speech therapist (there are only a few trained ones around) is generally heavily booked. One session costs anything from Rs 150 to Rs 200 and is designed to demonstrate to the mother how to train the child to use her voice. The therapist provides her with a schedule until the next appointment which might be a few weeks later.
A devoted mother can, by sheer hard work and effort, help her child hear and speak like any normal person of her age. She is thus integrated into the mainstream and can attend a school for normal children. This satisfaction and sense of fulfillment can, however, be marred by the non-cooperation of others and the social pressures a child in this situation faces. There is a lack of public awareness about hearing impairment, Dr Tahira says. People, even educated ones, tend to treat a child with hearing impairment as being mentally handicapped, she adds. On the contrary, such a child is not mentally deficient in any way. She might, in fact, be very bright and intelligent.
She recalls the case of a boy who had managed to overcome his disability with the help of hearing aids and speech therapy. He was attending school with children with normal hearing, when the batteries of his hearing aids went dead in the middle of his class. The child was totally confused and the teacher failed to understand his difficulty. The child was expelled from school for having a behaviour problem!
In adults with hearing impairment, the problem is of another nature. Many people just do not want to admit that they have difficulty in hearing. The social stigma is so strong. There is also the economic factor, since hearing aids are pretty expensive. When they do come to term with their problem – due to the demands made by their jobs or family pressures – many people take a hearing aid. But many of them stop wearing it after sometime. Dr Tahira finds the rejection rate inordinately high.
Why? One reason is that there is a lot of commercialisation in this field. There are businessmen who bring cheap quality hearing aids from abroad and sell them at a profit. They don’t even bother to have an audiogram done to adjust the aid to the individual needs of a person. No moulds are made and as can be expected the hearing aid is extremely uncomfortable. It only amplifies the sounds (making some noises beyond human tolerance) and does not screen out background sounds. Small wonder, not many people can tolerate this little instrument in their ear which is uncomfortable and noisy.
In other places, shop have facilities to arrange for an audiogram. However, their equipment in not calibrated and checked regularly. If it loses its accuracy, the machine’s measure of hearing loss is not reliable. The hearing aid adjusted to this incorrect measurement can be problematic and cause a lot of discomfort. Hence the high rejection rate. Finally, the high price of hearing aids make them unaffordable for many people who need them.
Speech and hearing checklist
Dr Tahira Aleem advises that if your child’s behaviour does not follow the pattern given below, get his hearing evaluated:
AVERAGE AGE AVERAGE BEHAVIOUR
3 – 6 months: He awakens or quietens at the sound of his mother’s voice.
7 – 10 months: He turns his head and shoulders toward familiar sounds,
11 – 15 months: he shows his understanding of some words by appropriate behaviour, for example, he points to or looks at familiar objects or people, on request. He jabbers in response to a human voice or may frown when he is scolded. Imitation indicates that he can hear the sounds.
1 – ½ years: Some children begin to identify parts of the body. He should be able to show his nose or eyes. He should be using a few single words. They are not complete or pronounced perfectly but are clearly meaningful.
2 years: He should be able to follow a few simple commands without visual clues. He enjoys being ‘read to’ and shown simple pictures in a book or magazine, and will point out pictures when you ask him to. He should be using a variety of everyday words heard in his home. He refers to himself by name.
2-½ years : Many children can say or sing short rhymes or songs and enjoy listening to records or to the mother singing.
3 years: He should be able to understand and use some simple sentences. He should be able to locate the source of a sound.
4 years: He should be able to give a connected account of some recent experiences.
5 years : His speech should be intelligible, although some sounds may still be mispronounced.
Source: Dawn 12 Feb 1998