the media GRRRR

[eidsvold]

Is anyone else bothered when newpapers use inappropriate terms? What bothered me on the weekend was a supposed'high brow' newspaper ( guardian - i think - poor memory) chose to write an articale about a young boy with down syndrome who had been refused admission to his local school. The whole article referred to the boy as a 'downs' boy. That phrase made me so angry .... he is NOT a 'downs' boy he is a boy who just happens to have down syndrome. Why do the media pigeon hole people..... it just adds to people's ignorance and intolerance.

Okay - rant over. Still deciding whether to write to the paper or not... however after having a previous letter to the editor reworded so that the person was referred to a 'downs' girl - i am not so sure I want to.

having read that - not sure I would go for the implant- it's not a clearcut decision

Thinking about it I think this whole discussion comes down to how disability is viewed.Eidsvold didn;t likethe article because she sees her baby as a baby not as disabled. the deaf community don't like cochlear implants as they see themselves as offering plenty to society without neding to be "fixed" i.e. they don;t view themselves as disabled. It's the same view I've heard from autistics. And you know never hearing your child call you mamma is no big deal- ds1 (three and half) hasn't called me mummy yet- so what? it's even less of a big deal if your child can sign mummy in their own language.

I love this page and used to have the definition of neurologically typical on my fridge..... Turns it all around a bit.

This debate about cochlear implants is a very interesting one. I think Jimjam's point about the deaf society and falling between 2 groups is very important.

What if, by genetic engineering, an African Carribean family were able to have a white child? In some areas and from some perspectives, you could describe being black as a handicap, but that solution sounds dreadful to me. You could perhaps also compare the cochlear implant to families who force their gay children into marriage. I'm not saying I do, incidentally, just playing devil's advocate.

On the inital question on this thread, I think an important thing that no one has mentioned is that there is a world a difference between what an individual with a disability calls themselves, or askes their friends to describe them as, and the appropriate term that institutions such as local councils, the benefits agency and the media should use. In the same way that some gay men refer to themselves as queer but would be concerned if they heard the BBC using it. The person who says the word can change the meaning.

I think JimJams has to be right; Helen Keller went deaf & blind at age 2; she learnt a sort of sign language around age 10 and went on to author many books. Living proof that that language can be acquired after age 3.

Personally, I don't regard deafness as a disability.

I haven't had time to read the whole of this thread properly but it looks very interesting. I was taught some definitions that I think are quite interesting when looking at this issue. They are as follows, an impairment is a loss of function or abnormality (though I guess normality could be debated), a disability is the restriction or inability to perform an activity because of the impairment, and a handicap is the limitation to life roles or lifestyle as a result of the disability or impairment. I think what it is trying to get at is that a person may have an impairment but may not actually be disabled or handicapped by it, either because they have adapted a different way of doing things or have used an aid to help. And that not all impairments should automatically lead to disability. Many people who are handicapped (ie have an impairment which then restricts lifestyle) are only handicapped because the misperceptions and inadequecies of the non-impaired world.

Zebra, are you deaf?

Jimjams, a superb site. It should be printed out and given to every teacher and student teacher in the country. I'm printing it out as I type this and putting it in my work folder as a permanent reminder of the reality of life.

It seems utterly obvious that deafness is a handicap. There is nothing a deaf person can do that a hearring person can't. It's like saying the inability to see isn't a handicap. Of course it is. It doesn't make a blind or deaf person any less of a person or worthy of inclusion or anything else. But it is a handicap and something that will exclude that person from many of the pleasures and experiences that other people take for granted. I think it is profoundly morally wrong to impose your disability upon your child who simply doesn't have a choice. The point about language acquisition is that it is based on hearing language - you don't have to speak it before three, but if you don't hear it, it will be very, very hard to learn afterwards. This is a simple matter of developmental science, not a political point. Why deprive your child of a chance to do something that could so open the world up to them? Why force them into a narrow ghetto? Would anyone think it was Ok for a family to refuse treatment to a child who would otherwise be blind?

If deafness isn't a handicap what about deaf/blindness? Or blindness?

you are right jim jams i have no problem with the content of the article - it is important that these situations are brought to the notice of the general public and that parents are not going to put up with inappropriate behaviour from government departments BUT i do have issue with the use of language.

I tend to agree with your posts, aloha, so I'm quite hesitant to say this, but I do think you're wrong here. Not because I think cochlear implants are wrong - obviously they can be life changing, but because I think you have been too judgmental ('I find that akin to child abuse' ) about a issue of which I assume you have no personal experience (obviously I haven't either so feel free to correct me ).

I was really interested in this debate and found Jimjam's link on turning autism upsidedown very to the point. Apparently there's a book The Mask of Benevolence: Disabling the Deaf Community by Harlan Lane that covers this subject from the viewpoint of a deaf person which I'd like to read.

The review I found says this (it's long so skip if you want):
*unethical to implant children, given that the surgery has such failure rate, that the costs (both in money and in time/effort on the part of the child and the family) overshadow everything *The surgery is destructive of the physical structure of the cochlea and other parts of the ear, so should some later therapy be discovered
with less invasive procedure, these CIs would not be candidates for any other surgical procedure. *The hours of rehabilitation for CIs rivals the hours of practice for competition sports, with as much psychological pressure to succeed *the anecdotes I know of are of CIs who as teens and young adults refuse to use the device, because it is so effective at making them different looking (subjecting them to teasing by their peers - those hearing kids that they're supposed to be integrating seamlessly with), and so marginally effective in its original purpose.

I think those deaf parents who refuse cochlear implants for their children are to some extent 'making a stand' against the end of support for signing after CI, the insistance that their child must wear something even though it makes them look different, that their child should be put through such a tough time for something that might not work effectively. I can understand those points as a parent. As with everything, you have to weigh up the possible benefits with the possible downsides.

But aloha - a deaf child with a cochlea implant is still a deaf child- and they still require a lot of language work and visual type education. I think keepingmum has expressed the whole "what constitutes a disability" thing very well. Being deaf isn't necessarily a handicap (although it could be a disability) as there is a lively, active deaf community and with a bit of change in general society there is no reason for the deaf to be handicapped. Sign language isn't simply an attempt to put English words into sign- it is a language in its own right that has evolved in exactly the way spoken languages have evolved. I think the deaf community may have a problem with cochlear implants as they see hearing parents trying to "mend" their deaf child rather than accepting them for who they are. Remember that with a cochlear implant you are not restoring normal hearing. You are providing a hearing aid and there may be alternative ways to do this.

Some parents within the autistic community may think I'm a bad parent because I would never put my little boy on an ABA programme. I would use ABA techniques to teach specific tasks but I would never do a whole programme becuase it basically teaches children that autistic behaviours are "bad". I don't want my son to grow up thinking he is bad as he can't behave in the same way as others so I wouldn't choose a programme- which isn't to say I don;t understand why people do choose that route becuase I do. I guess what I'm saying is you don;t have to attack a disability head on to prevent it being a handicap - you can work with the disabled person as well. I guess that it my main complain against ABA, and I would imagine that is why some deaf people feel very strongly about cochlear implants.

Good site isn't it hmb. I found it a year before diagnosis - athough we already knew that ds1 had tendencies- I like it.

About cochlea implants...

"maybe you would feel that your child had a right to full access of that rather than be forced somewhere between the hearing world and deaf world"
The child is not really somewhere in between. They are still deaf and will always be deaf even though the implant allows them to hear if they wish. The implant allows them to "join in" with the hearing community.

"am I right in thinking that cochlea implants don't provide "normal" hearing???"
Apparently it is a tinnier sound but you can still hear things like the wind in the trees etc.

" a child they would prefer to be deaf in later life, they could always have the implant removed"
The child will always be deaf - if they don't want to hear, they can simply remove the external hearing aid and magnetic contact or switch the processor off. Once the hearing aid/magnetic contact is off, there is nothing to see that would let you know the implant was there (this came as a surprise to me!). Having the implant inserted is a complex and long operation carrying the risk of partial facial paralysis if the facial nerve is damaged. I don't think having it taken out is an option.

The insertion of the implant destroys any residual hearing in that ear - which is why they only implant one ear. If any new therapy came along, there would be one undamaged cochlea.

"the insistance that their child must wear something even though it makes them look different"
If the child does not have a hearing aid of some sort, then they are not going to be able to socialise effectively with hearing children. An ordinary hearing aid is just as visible and open to ridicule as an implant one.

One of DS1s friends was left profoundly deaf after meningitis at age 2. She had the implant inserted at 3.5 and 6 months down the line is making excellent progress with her spoken language - the difference is lovely to see. She can still sign and lip read so she is well equipped to deal with both the hearing and deaf communities and can make the choice herself later whether she wishes to use the implant or not. She will now be able to attend a mainstream primary school without too much special assistance.

DS1 (and 2) learnt some signs when she was learning to sign (hello, goodbye, biscuit please etc) and I have gained some insight into the difficult choices this child's parents have had to make as well as learning more about the deafness and a few signs.

HTH!

(and I think but am not sure, that an ordinary hearing aid would not have been affective in this case)

thanks for that soup dragon- I've learned a lot. Having looked a bit into it for this discussion all I know is that I have no idea which decision I would make, but I would be able to see the reasons for either (and I think my decision could potentially be different if a child was born deaf as opposed to losing hearing). Thought provoking stuff.

I learnt a lot through this child too - I think my understanding of it is correct, if a little generalised.

I think the parents decided that they had to offer their child the choice of hearing v deafness. This was the ideal age to do it as she is unlikely to remember much about the operation or the hard work that went with it all and will be able to pick up speech fairly normally. The choice will be hers to make later whether she uses the opportunity to hear.

It's not a choice I would have liked to make and I hope I never have to.

anyone else shocked by the headline in yesterday's Mail on Sunday which read - 'There'll be more fighting than at a pikey wedding'?!?! What was that about??

Haven't got time to read this whole thread, but a close family member is blind.
Have you read Ben Elton's Gridlock? (I think it was in that book). Main character has a disability and has reclaimed the word 'spastic', thus rendering it inoffensive. The whole issue is dealt with brilliantly in that book, I feel. Mind you, I love the ground Ben walks on, so I'm biased.