From: The Sunday Telegraph, UK - Feb 4, 2004
When Fiona Leney learnt her son was deaf she did all she could to help him hear. She reckoned without the determination of the 'Deaf community' to stop her
'What you're proposing doing to your child is the equivalent of rape," said the woman in a smug tone of voice. It wasn't quite what I'd expected to hear at a support group for parents of deaf children - but then I was new to the topsy-turvy world of Deaf Rights.
My husband and I were in the process of making the hardest decision of our lives: whether to ask for an operation which was likely to help our son to hear significantly better. The cochlear implant is an advanced hearing aid: not a cure for deafness, but it does have enormous potential. With an implant, even someone who is totally deaf can acquire useful hearing.
It had taken two years of soul-searching to reach the decision that the device - an array of electrodes implanted into the skull and inner ear - would offer our son Oliver the best hearing he could get. It was also the culmination of a struggle with prejudice and ignorance.
The smug woman at the parents' support group had a deaf child herself, and had enthusiastically embraced the sign-language-using "Deaf community" (its members insist on a capital D to stress their separate identity). She and her husband had decided that their daughter would use sign language only, thus avoiding the "indignity' of trying to speak or hear; and they vigorously condemned parents who "forced" hearing on their children.
"After all, you have to accept that our deaf children don't really belong to us, they're members of the Deaf clan," added her husband, sagely.
I cast my mind back to that morning in Johannesburg two years previously, when we were told that our longed-for son was profoundly deaf; and to the battles we had fought since then to give him the best possible start in a hearing world. "Not really mine?" I said. "I don't think so."
We had gone out to work in South Africa in 1996, partly to get away from dewy-eyed friends who were starting families while our attempts to do so stalled. So we were overjoyed when Oliver was born in 1998. But delight turned into anxiety as we noticed our four-month-old baby fail to react to the cacophony of snarling, barking dogs behind our neighbours' security gates. We progressed to slamming doors behind him, banging saucepan lids; even sneaking up on the poor boy while he slept and turning the radio full on. Nothing.
We took him to the doctor who sent us off immediately for something called an otoacoustic test (which assesses hearing using a lap-top computer and ear-piece). Twenty-four hours later, I felt as if I was living out some grotesque hospital drama as I watched the nurse gradually drop her banter.
The consultant was called, who told me that Oliver had "a serious hearing loss" and would need a further test, under anaesthetic, to reveal the extent of it. Even then, I was making bargains with myself - "I won't complain if it's just a slight loss, it doesn't have to be serious, maybe he won't need hearing aids . . ."
The next test left no room for doubt.
"Your son is what we call profoundly deaf. He may have some natural hearing, but it's too little to show up on the machine read-out. He certainly can't hear the human voice."
The sense of disbelief was so acute, we found it impossible to tell anyone other than close family. It felt like bereavement, but with an extra element: terror of an unknown future. How were we going to communicate with our son? Had all the songs and stories we'd fondly burbled at him for the last four months been a waste of time? Ninety per cent of the 800-odd deaf children born in Britain each year have hearing parents, yet so few of us have had any contact with deafness, we are frightened of it.
The consultant put us in touch with a specialist centre for hearing-impaired children. Within a week, Oliver had been fitted with hearing aids and had started to see a redoubtable therapist called Estelle. She saved our sanity.
"Never think that there's no point in talking to him," she told us straight away. "It's even more important to talk to a deaf child than to a hearing one."
She would listen, not preach, to us, then shake us out of our fears and make us see just how much our boy could do.
The first few days were horrendous. We needed to see if the hearing aids - huge next to Oliver's soft little baby ears - did actually make any difference. We dutifully pushed ear moulds into his tiny ear canals, and arranged and rearranged cushions and pushchair backs to try to stop his head, and therefore the hearing aids, leaning back on them too heavily.
This would cause feedback and an ear-piercing whistling. Thankfully, Oliver wasn't yet co-ordinated enough to find his ears with his hands in order to pull the wretched aids out. By the time he was, he had realised that they were too useful to be posted down the loo with his other toys.
Slowly, things improved. Oliver's hearing remained the same - on a scale of one to 10, he'd be hearing at about four with his aids. But with Estelle's help, and using lip-reading, he could hear speech and most sounds around him - and he loved it. One day we realised we were happy, besotted parents again, just like anyone else.
Our beautiful boy was infuriating, charming and as chatty as his peers. By the age of 18 months, when we returned to England, he had a vocabulary of single words - which included "cheetah" and "aardvark".
Once here, everything ground to a halt. No information was forthcoming, even from our local GP. It took me two weeks of frantic phoning before I located the relevant services. Even then, there was a sense that we were being too pushy.
"Speech therapy?" asked one astonished NHS official. "I'm afraid that's not generally available until they start school." It was a source of amusement to various officials that in South Africa Oliver had been "seeing" someone from the age of five months.
The homecoming was a complete culture shock. Worse was to come. I had never heard of the "Deaf community" and although it's impossible to say how many this community numbers - the statistics on British deafness vary enormously, from 8 million to 500,000, depending on definitions - I suspect Deaf community spokesmen speak for a small minority.
In Britain the most vocal Deaf community lobbyists believe in a separate language, British Sign Language, and a separate culture for all the deaf. We'd managed very nicely without them in South Africa, where our boy had just been Oliver - a lively toddler who just happened to be deaf. Now he was a "Deaf child", a sort of totem, and this "community" didn't seem to want such children to hear.
We had moved to the West of England, and were encouraged to go to weekly meetings at a deaf school in Bristol in order to get to know other parents in our position. This was a great idea, in theory. In practice the sessions were often hijacked by Deaf community ideologues.
At one such session, a grandmother was asked whether she appreciated the benefits deafness conferred on her grandchild. She looked rather stunned, then stuttered, "Oh yes, in fact . . . I'm glad he's deaf." There were cheers all round, as if we were at an Alcoholics Anonymous meeting. We began to wonder what we were doing there.
Our big break came when we read about a new type of speech therapy being practised by one woman, Jacqueline Stokes, in Oxford. New, that is, in Britain. It is widely practised abroad, particularly in the United States and Australia.
While traditional methods for teaching the deaf have involved lip-reading and sign language, using the eyes to compensate for the ears, new technology means that, for many, these skills are no longer so crucial. Auditory Verbal Therapy is about encouraging a child to use what hearing they have to the full: "If you're trying to build up a specific muscle, you go to the gym and exercise it," Jacqueline told us.
It was a tonic to be encouraged to have high expectations for Oliver, after our disheartening experience of a culture which tells you that "doing well, considering" is as good as it gets. But AVT has its enemies. Myths abound, because the Deaf community ideologues cannot abide the idea of nurturing hearing in a deaf child.
"Don't AVT teachers cover their faces up with black screens, so the children can't lip-read?" one deaf person asked me recently, horrified that I could put my child through such torture.
When Oliver started school, it became clear that he was not hearing enough to do well in noisy classroom situations. The demands of language, too, became more complex. We returned to the thorny issue of an implant.
Supported by Jacqueline, and by the head of the unit for hearing-impaired children at the mainstream primary school he attends, we decided to press for our son to have the operation. The issue for us was not whether he needed a cochlear implant to hear, it was "what will allow Oliver to do his best in a hearing world?"
Six months later, and the results are more than we dared hope for. Whereas before, speech needed to be loud and clear to be understood, now Oliver can hear a whisper.
Situations which are normal for hearing families - such as being able to shout a question to a child upstairs and receive a reply - are a daily thrill to us. As Oliver can understand speech without lip-reading, he can enjoy computer games and tapes, and begin to use the telephone. If he is wearing the processor that connects with his implant, we can talk in the dark.
For the Deaf community, this smacks of refusing to accept that our child is deaf. Not at all. Take the processor off, and Oliver is still deaf. I love my son dearly, and would not exchange him for any other child, hearing or not. But I cannot say I am glad he is deaf. A hearing life, in a hearing world, is so much easier, and what parent wants to see a child struggle?
Recently, at a course with three other hearing parents on developing advocacy skills, our Deaf instructor asked us whose opinions a medical practitioner should take into account when treating a deaf child. "The parents," we chorused. "Who else?" he asked.
"The child's, if possible," we replied. "But who else?" he insisted. We thought hard. We suddenly realised the answer he wanted. "The Deaf community?" we ventured. "Of course!" he said. I replied that, as Oliver's mother, I simply did not accept that a mass of strangers, with nothing but one physical characteristic in common with my son, should have any sort of say in his welfare. I got a pitying smile.
"Of course, you are his Mum! Hold on to that feeling!" he replied. "But remember, he won't always be a little boy. As he grows up, he's going to seek out deaf people. He will meet people like me."
He clearly thought I was desperate to keep Oliver away from deaf people, such was my prejudice. In fact Oliver already has some deaf friends, and that's fine. The point is that while he might socialise with them, they have no right to tell us that it is best for our son not to hear.
Take the case in America of the two deaf lesbians who, two years ago, sought out a deaf sperm-donor in order to ensure their baby would be deaf. The baby's mother, Sharon Duchesneau, justified the decision by saying "Deafness is an identity, not a medical affliction that needs to be fixed."
The Deaf community here upholds that belief to the letter. Its ideologues are appalled at the thought of parents wanting their deaf child to hear, because they view impaired hearing not as the loss of a vital physical sense, but as a way of defining who they are.
The roots of "radical Deafness" lie in the past. At the beginning of the 20th century, it was not uncommon for deaf individuals to be shut up in mental asylums. Thirty years ago, when hearing-aid technology was still too poor to help many deaf children, sign language was fiercely discouraged. Teachers would force a profoundly deaf child to sit on his hands and try to lip-read. It was unsurprising that the result was mental illness and marginalisation - and a growing sense of anger among those who could see that something was wrong with the system.
But the hardliners in the Deaf community seem incapable of grasping that, just as the hearing society had no right to impose its values on them in the past, so they have no right to impose theirs on us. The Federation of Deaf People, for example, a small but particularly vocal campaigning group, has declared that cochlear implants on deaf people under 18 "amounts to experimentation". Yet a crucial factor in the success of a cochlear implant is the age of the patient: the brain needs the flexibility to learn to process this new sensation called sound. Two is considered the ideal age.
We now have what we, and Oliver, want; but many in our position are not so lucky. Ideally there would be excellent services and freedom of choice - whether for signing or speaking - for parents of all deaf children. In the meantime, it is hard that those trying to come to terms with their child's deafness must also face the deafness to reason of a bullying minority.
© Copyright of Telegraph Group Limited 2004.
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