herald

Monday 22 September 2014

Can we criticise a mum who wants her child to hear?

YOU may have read the story last week about the EastEnders actress, Rita Simons, who wants her deaf six-year-old daughter, Maiya, to hear better by having an operation to get a cochlear implant. But Simons, who plays Roxy Mitchell, says she was told she would be "abusing" the child if she went through with it.

Why would anyone think that giving your child a cochlear implant would count as abuse?

You might also be wondering what exactly a cochlear implant is.

It is essentially a special kind of hearing aid that is surgically inserted deep inside the inner ear.

It stimulates the parts of the hearing 'nerve' that a conventional hearing aid can't, enabling many profoundly and totally deaf people the opportunity to experience sound.

The operation to insert them into your inner ear is quite a serious one (it involves drilling into bits of skull bone, for instance), but is now considered a fairly routine procedure and not particularly risky. I know all this because I have a cochlear implant.



artificial

In fact, cochlear implants have been around for years and are now very common.

Over 200,000 deaf people worldwide have them, making it one of the most widely used prosthetics, after hip replacements or heart pacemakers.

In Ireland, nearly 500 adults and children have gotten implants from Beaumont Hospital, which has run the national cochlear implant programme since 1995.

But a cochlear implant is not a 'miracle' cure for deafness. It doesn't restore hearing; it replaces it with an almost completely artificial system that is nowhere near as good as normal hearing.

And because it is a totally new way of hearing, it can take quite a long time to get used to it.

But once you adjust to it, it can give you very serviceable, useful hearing. However, it doesn't work for everyone, while others may only get limited benefit.

However it now works really well for me and the chances are it could work well for Maiya, too, but her mother knows full well that it won't give her perfect hearing.

Nonetheless, she says she encountered "extraordinary" hostility from "people who firmly believe that deafness should be embraced rather than treated as a physical deficiency that should be corrected".

"I respect their point of view," Simons told Hello! magazine. "But when a 19-year-old girl told me that I was an 'abuser' to let my child have a cochlear implant, I was horrified and deeply hurt."

But why would anyone "embrace" their deafness?

I didn't grow up in the deaf world, but I've met and gotten to know many signing deaf people. And what I understand now is that not every deaf person wants to be 'fixed'. In fact, some people are very happy to be deaf.

Leaving aside the fact that implants don't do much for anyone who has been deaf for all or most of their lives, choosing not to get one doesn't condemn them to deafness in terms of communication because they have sign language.

So proud are they of sign language, members of a deaf community typically consider themselves not as a group of people with disabilities, but as a distinct cultural group with its own language.

Irish Sign Language, like British Sign Language, French Sign Language and American Sign Language (yes, they're all different), are fully fledged languages with just as much complexity and sophistication as spoken languages.

But years ago, when cochlear implants starting getting popular, the media over-hyped them as hearing 'cures' when they were anything but.

The hype fed a genuine fear among deaf people that cochlear implants would effectively kill off their deaf communities and wipe out sign languages.

This deep-seated fear has lead to the kind of hostility that Simons was recently exposed to.



music

The truth is, some of their fears are being realised -- albeit slowly.

Thanks partly to cochlear implants and better hearing aids, the numbers going to deaf schools have fallen sharply, leading to a weaker and less vibrant deaf community.

But deaf communities are adapting and cochlear implants are now much more widely accepted among the 'culturally' deaf -- because they realise it is not a hearing 'cure'.

I know a few deaf people who got them recently -- one who wanted to be more independent at work and the other so that she could hear and enjoy music more.

But they still use Irish Sign Language and they still consider themselves deaf.

But what deaf communities (including Ireland's) would really like now is for parents of deaf children to meet with them and see that their child could benefit not just from cochlear-implant and hearing-aid technology, but also from learning sign language and being part of a strong and friendly community.

They are not mutually exclusive choices; a deaf child can grow up to have the best of both worlds.

That bigoted 19-year-old who labelled Simons an abuser probably wanted to deny her child the benefit of those choices, but there are always extreme elements in any community.

Opinion

Entertainment News