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March 17, 2006

Deaf Talkabout: Pluses and minuses to medical cure for deafness

From: Belfast Telegraph - United Kingdom - Mar 17, 2006

By Bob McCullough

17 March 2006

Television studios buzzed with excitement on Tuesday morning as prominent doctors were interviewed about statins and the possibility that this new group of drugs might not just reduce cholesterol in the blood, but actively improve the condition of patients with heart disease - our country's biggest killer.

Just after this, a news flash came up on my computer saying that death from measles was down 48% in the years between 1999 and 2004. Like meningitis and mumps, measles is a serious illness that sometimes leads to total deafness.

Does this announcement mean the success of the MMR jab is contributing not only to a lowering of the death rate but also to a reduction in the number of babies born with a hearing impairment?

Many in the deaf community are perfectly happy with their four senses and take exception to this current talk of medical solutions to deafness, especially these new-fangled theories on gene therapy, which appear to be aimed at the eradication of the hereditary aspects of deafness.

But in the New Testament story, Jesus healed a deaf man and by doing so seemed to give his approbation to the need of five senses for the proper enjoyment of life.

Will deafness ever be totally eradicated in the same way as smallpox or tuberculosis? Or, to put it another way, if ways can be found of telling a pregnant woman that her baby might have a defective gene and be born deaf, will she be given the chance to opt for termination? Or an operation to remove the flawed gene?

This brings back shades of Aldous Huxley's Brave New World, but it's a challenge we might have to face.

I lost my hearing from typhoid while staying at my uncle's farm near Carrickfergus as a boy of 11 and the last thing I can remember is the sound of the light switch being turned off by the nurse after putting me to bed at Larne Fever Hospital.

After wakening from my delirium the loss of hearing was total and instantaneous. But a more immediate problem was that my sense of balance had been destroyed along with my hearing, and for some days the only way of getting about the room was by crawling on the floor.

Even now I experience great difficulty walking in the dark - a problem shared by many other deafened folk.

My father and mother, just like all other parents of a deaf child, had no idea what to do and spent quite a lot of money taking me round so-called experts who promised to alleviate or restore my hearing.

I shall never forget the expression on my mother's face, and the tears in the nurse's eyes, when eventually told by a hospital consultant that my deafness was absolute and nothing could be done.

Something the same happened to Evelyn. She got mumps just before she was five and with her too the hearing loss was total.

Her parents took her to a specialist in London and as her father had been a Baptist pastor, prayers were said for her in churches all over Ireland. Evelyn tells me about feeling disappointed with her father because he seemed to have stopped talking to her when she sat on his knee.

I would love to hear music again and enjoy opera and the theatre ? but the question remains: if an operation or drugs to cure deafness had been available in those days would we have ever met and got married?

We have had such a rich and happy life that even considering such a possibility fills me with dread.

© 2006 Independent News and Media (NI)
a division of Independent News & media (UK) Ltd