I was a bit late in the day getting to this. Obviously I aways listen to the Today programme on Radio 4 but yesterday, what with being Daddy Daycare and all, I had to forego...
Anyway, wouldn't you know it, yesterday's (Tuesday 24th July) show featured an item on cochlear implants. You can hear it until Sunday on http://www.bbc.co.uk/radio/aod/radio4_aod.shtml?radio4/today_mon - the item is about 2 1/4 hours in (around 8.19) - the controls allow you to jump in 15 minute increments.
A play, expressively titled 'Playing God', was being discussed. The playwrite, a deaf woman who's comments were being translated, had a position on implants for children that you mightn't have too much difficulty gathering from the play's title. I'm one of the folk 'playing god' with my child's hearing.
Also interviewed was Emma Nicholson, a Liberal Democrat MP who is partially deaf herself. She weighed in with some heartily ill-informed comments too, largely based around concern about the young age of some implantees.
I have no problem with people having opinions different from mine it's just that, too often with cochlear implants, they are couched in language that brooks no alternative and it was these opinions that were broadcast on a national radio show that is largely regarded as setting the day's news and political agenda with no airtime given to the counter-argument. And when I say counter-argument I mean scientifically proven benefit and factual accuracy.
There are so many untruths and leading opinions in the piece that could leave those who have no understanding of cochlear implants feeling that surgeons in this country were inflicting terrible pain on children for no reason. The desire to give a child the opportunity to develop spoken language and operate in the hearing world (which the vast majority of their parents occupy) is presented as a fool's errand and detrimental to the child's wellbeing.
Those of us 'on the inside' of the cochlear implant world thought that the climate had changed. For us the battle lines are drawn on issues of number of implants (two for all children at least please) not on whether parents should be able to make the decision on their child's behalf. The item actually suggests that the decision should be left until the child is able to contribute to the decision - a stage when the benefits are greatly reduced because of a lack of auditory stimulation to the brain in the intervening, developmental years. These are the facts that need to be put before the opinion-formers when they are listening to inaccurate reports such as this.
Just go and listen - and then write to Radio 4 and possibly your MP too.
5 comments:
from Brian Archbold (The Ear Foundation)
Many thanks Jason - I think that the broadcast was on Tuesday 24 July (not Monday) and it's about 2 hours:19 minutes into the programme. It's sad that such inaccurate information was broadcast in such a key slot.
Best wishes.
Brian
Hello,
Lets hear 2 sides to every story... ah well I cant join the debate.. no transcript.
You nearly lost your child through meningitis and your doing what you think is best for Tom after all you are a parent.
I would tend to wait till technology improve before implanting people .. but happily they do have guinea pigs.
I have a few questions to ask is..
1) did you meet any implantee before Tom was fitted?
2) were you aware risk of meningitis after having a implant?
3) Do you actually think that Tom will never get a job ,have family because of his Deafness?
What exactly is he missing out apart from not hearing music.
4) are you aware that you are saving tax payers money by implanting Tom and sending him to a Hearing School than having to send him or set up a Deaf school?
5) Have you asked that when going for a brain scan (for example a motorbike accident)that a implantee will give false readings...
Can you see why some people are against it for example... why bother getting the whole family to adjust when adjusting a implantee is the easier option.
Loads of research being made to *cure* Deaf people and as you can now see the resaerch into downs syndrome where you can abort them in womb.
Can you imagine (for argument sake) that you can detect Deafness in a womb and you have the option to abort it.. As you know that any child with a disability is too much work for parents and the cost of help is prohibitive.
So there is always a debate on who CI benefit? the implantee or the parent?
I wish Tom good luck in the future and hopefully by the time he is 16 and leave to get a job all discrimination will have ended..
AHHH...Screaming inside...this debate is just so frustrating. I just wish "the other side" would get their facts straight, so at least when they debate they can do so from an educated point of view.
All I want is for my child to have every opportunity in this world. A CI is an oppotunity to communicate with 99% of the world population. I'll take that any day of the week. We have to make tough decisions as a parent and the decision not to implant affects the child just as much (if not more, in my opinion) as implanting. No matter what, it is NOT the child's choice.
At least we can go to bed at night knowing we made the right decision. Just look at their cute faces...we know as parents!
Great post!
I think Emma Nicholson was being wary, and just isn't informed on the matter. As for the play.. jings, plays are so stilted, aren't they?
All parents play God with their children. That's what parenting is. Some are better gods than others. But yes, this certainly would have had my blood bubbling a bit. A 7-hour operation? When?? Babies signing at 5 months? Umm, in the advanced case maybe.
There's a lot of misinformation around within the deaf community about CIs. You're still deaf with it off; it doesn't cause tinnitus (deaf people and hearing people get it); it's not a significant life threat. Medics are in favour of it - but so are teachers for the deaf, IME.
If we could give our children X-ray vision through a low-risk operation, would we? To a deaf person, that's the similar question. To hearing people, though, it's not.
Anyhow, I'll see if I can't get myself on Today's list as prepared to talk on the topic. With the NICE review surely about to come out, it might be worthwhile. And sure, write to Emma N - but realise that she was only uninformed, not against this.
I think you need to try and weigh up the pros and cons for both sides.
As a hearing parent, it is almost automatic to want your child to be hearing too. After all, deafness is a disability, there will be certain career routes your child could not follow, and s/he will need more support generally (eg interpreters, someone to make phone calls for them etc).
Looking at the other side of the argument, being deaf means you can't hear music. Ok, big deal, you can still see the sun set and admire beautiful paintings. Its not as bad as other disabilities - you can still drive and move around by yourself quite easily. You will have good friends and support in the Deaf community, who you can positively identify with, not struggling to fit in as you may be if you are deaf in a hearing world.
Ultimately as parents you have to do what you feel is best. Once that's done you just have to roll with the punches and support your child as best you can.
This is probably a debate which will never be resolved.
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