to think that being deaf is not a disability?

[manicinsomniac]

I have a friend who is deaf. Her child is also deaf. Her child's father is not deaf.

My friend has a rich and diverse life among the deaf community. BSL is her first language (she also lip reads and is oral) and she feels most at home when using it. She works, she goes out, she watches tv/films, she volunteers and in general has a perfectly normal life, bar the fact that 85-90% of her time is spent with other deaf people. She feels that being able to hear would make her life worse (I can't pretend to understand but I accept what she says - stuff about never being able to experience peace and total focus, not have the ability to make instant friends with others because of a huge commonality, a loss of identity as a part of a very special community etc). She loves being deaf and it is who she is.

She doesn't even use terms like 'hearing loss', she calls it 'deaf gain'.

Her child is 9 and in a deaf unit within a mainstream school. Her ex partner wants the child to have a cochlear implant (I think that's what it is - an operation that would vastly improve the child's hearing anyway) but my friend is very against it as she feels it will take the child out of the community in which they belong and not properly make them a member of any other community. I don't know what the child wants, they are confused and trying to please both parents I think.

Most people have criticised my friend saying things along the lines of, 'why wouldn't you want to cure your child's disability' 'why not make a disabled child's life easier?' etc. I think they are wrong to think in those terms.

AIBU to think that being deaf is not a disability but in fact just a different language and culture?

I didn't bring mine up bilingual either. Doesn't compare. Not in the slightest. I denied them one culture. I can stand up and explain and in the grand scheme of things it won't matter. I would not be able to forgive myself for telling them I chose to let them be deaf because I was scared of surgery and because they can have a good laugh with deaf friends in BSL.

I did expand on the bilingual point.

I think saying that someone's life will be limited because they are deaf is appallingly arrogant. The profoundly deaf person who teaches ds1 surfing (who btw is also severely disabled) has done a lot more in his life than many, many people (the vast majority in fact) I know who have hearing. How dreadful to judge his life as limited. And how presumptuous to assume that all his friends would be deaf.

A link here to the risk and drawbacks of cochlear implants from the FDA. That's a long, long list. Now for some people the hearing obtained from CI will be worth those potential drawbacks, something I can understand. For others it won't, something else I can understand. Deciding someone's life will be limited unless they have cochlear implants is quite another thing. If you're surfing & winning competitions at international level then I think 'can't let the external parts get wet' (from the list) would be a major PITA and quite possibly limit your life far more than not being able to hear would (note it's harder to keep things dry in the sea than in a pool - especially when being wiped out by a Hawaiian monster wave). It's for each family to judge the right decision for their family and lifestyle because anyone who knows anything about deafness or CI will tell you it is not a simple question with one right and one wrong answer.

Deaf people do have their own culture.

It annoys me but its true.

I speak as a deaf person who went to a hearing school to 'fit in' with mainstream society. I know zero sign language. My makaton comes from running a sing and sign class and I don't regret any desicions my parents made as they did it in my best interests with the knowledge they had.

Oh and I know they can remove the external part to go surfing, but if you're spending half the time in water and faffing about with expensive equipment and where to leave it it could become a PITA & fairly pointless. Particularly if you feel you do fine without it.

DS1's communication device for example makes it very difficult for us to go camping because it cannot be charged. It makes it hard for him to do outdoor activities because it cannot get wet. It actually makes it harder for him than when he didn't have the device because now he is used to being able to communicate with it. In our case not a reason to not have the device (we just don't camp and I used a lot of plastic bags to reduce the risk of it getting wet & let him take that risk and have a voice), but many devices come with drawbacks & it's up to each family to decide whether it's worthwhile or whether the negatives outweigh the benefits. It's not up to those of us who do not have the condition to pass judgement on how much better/worse their life would be with or without intervention.

This looks interesting Playing God: Theatre exploring cochlear implants

I may come across as arrogant. I can live with that. I have given my children a voice, in all its meanings.

JimJam - you're against MMR too, from what I remember. Nit surprised you'd find implants threatening as well.

ATOS would love you.

I can't believe that there are people on this thread who think it is acceptable to deliberately create a disabled child. Do normal thinking people really, genuinely believe that it is ok to go through a cycle of IVF, have pre-implantation genetic testing, discard all healthy, non disabled embrios and implant the disabled ones? Really?

There is a vast, vast difference between conceiving a baby in the knowledge that baby may be born with a disability, opting to not have any testing and to accept whatever nature gives you, to have a baby diagnosed during a routine scan yet opting to not terminate an already conceived child, and deliberately setting out to have a child who will be disadvantaged from birth, in fact, seeking to have a child who will be disadvantaged from birth. And all the talk o enabling the child to be a part of their community is, to be frank, selfish bullshit. Because any child does not stay within their family community for life - they grow up and become individuals in their own right, capable of making their own decisions and being a part of the community they choose. Except if their parents have chosen them to be disabled those choices have been limited already. It is immensely selfish and abhorrent behaviour.

I am VI and this is how I have always been. I don't consider myself disabled, and if someone offered me sight tomorrow I would probably turn down the offer on account of the fact I would see being able to see as a disability for me. For anyone who finds that difficult to comprehend (as per above) I will try to explain. As someone who was born blind, who has never seen trees or shapes or colour or read print or recognised a facial expression, the thought of suddenly having to learn to do all that would be as terrifying to me as someone having to learn to read Braille and recognise people by voice and cross the road when you don’t hear any cars and not know who was standing next to you unless they spoke etc etc. So for me at this point in my life, I wouldn’t choose it. Now, my xh also has a VI which is genetic. And as such we had a 50% chance of any children we had being VI as well. His family is in fact unique in that almost the whole family is VI, his parents both, both have VI siblings and fil’s parents wer VI as well. Xh and his sister are both VI. So I knew there was a chance that my baby would be VI but there was an equal chance that he wouldn’t, and therefore it was a chance I was prepared to take. After all, if anyone was prepared to deal with a VI child I was perfectly placed to do so. My ds is perfectly sighted, and I am glad about that. I was prepared to take the chance of having a disabled child knowing that I was taking a gamble. However if my xh had suggested that we have tests to ensure our child was VI and illiminate the possibility of him being able to see we would have got divorced much sooner.

I think that only if a child’s life will not be enhanced/will be made worse by treatment should a parent be allowed to refuse that treatment. Otherwise it should be up to the child.

I've had cochlear implant patients come back and their speech is amazing, you wouldn't guess they are deaf. I know one who plays for a football team and I remember another saying that now they love listening to music. It's amazing, I fail to see how that isn't.

However not everyone is suitable for an implant. And it's a long road to get one. Funding is sometimes an issue as they cost around £17,000 each and you have it have in depth hearing tests and MRI scans and various assessments. Then there's the 3 hour operation. It has risks, but so do all ops I guess.

I only ever remember one patient who had it removed because they didn't use it.

I know that in some ways I'm glad that DD2 isn't a candidate for CI (for several different reasons) because I won't have to deal with making the decision and constantly worrying that as an adult she'd feel I'd made the wrong one.

And I do think it's a positive thing for her that she'll be able to take her aids off and play contact sports (the older two do rugby and judo so it's likely she'll want to join in when she's old enough), rather than restrict what she can do (although you can still play a lot of sports such as football with CIs).

I think saying that someone's life will be limited because they are deaf is appallingly arrogant.

No it isn't. It is a simple truth.

However, you seem to be taking the ball and running with it and saying that what is being meant is that no deaf person can have a happy fulfilling exciting life, which is absolute bollocks.

But limitations there will be. I have given you a very clear example of court proceedings. What happens if you are suddenly taken ill and go to A and E and there is no one to interpret for you?

I don't for a moment accept that my life has been shit because I am disabled - BUT I have been seriously limited in some things I would have liked to do, such as running on sand. Or running anywhere actually.

I admire your friend greatly for her stance on her disability and attitude to her life. Also I do understand that the decision whether to go for a cochlear implant is not straightforward one.

However, as a parent of a child with a relatively mild hearing loss, I just can't agree that being deaf is not a disability. It affects him every single day. The playground is really hard work as he relies on lip reading a fair bit to understand and follow a conversation - tricky when everyone is running around. His speech was very slow to develop. It has made learning to read much harder - he found phonics really difficult. He gets exhausted at school as it's really hard work trying to keep up when you don't hear everything that is said (his hearing fluctuates and the first sign of a dip is always a dip in behaviour as he gets so tired and frustrated with it all)

But, hackmum , the OP has been back to clarify her OP (iykwim). Of course it would not be ignorant for her to observe that some deaf and partially hearing people do feel part of a culture and community and do not view themselves as disabled.

But that wasn't what the title or conclusion of the OP communicate. They are sweeping generalisations that are hard to take for some posters. Like any disability or difference it is a hugely complex and sensitive area and it's hard to read platitudes like that without responding with our own, often painful, stories.

The OP has returned though and made her view clearer than her original statements, so good on her.

YABVU and stupid to give any credibility to the nonsense 'deaf gain'.

PC bloody bollocks!

I haven't said I find CI threatening. I don't. I might even choose a CI for my child if I was in that position. I simply find it simplistic to think that CI are always the right option for everyone and that existence without them will always be second best. (WTF does CI have to do with MMR??? And I'm not just against MMR anyway - I made some different decisions for ds2 and ds3 following ds1 becoming severely disabled, that doesn't make me 'against' MMR - although I would prefer to see an individual rather than population approach to vaccination).

Having had a read of the FDA sheet if you're a deep sea diver and that is your main activity in life then you probably wouldn't want CI for example. It's not for someone else outside to judge whether that persons life would be better with or without implants.

I would think very very very carefully about doing anything that meant ds1 couldn't surf because it is an activity that has been life changing for him. It is the only activity he has, and the one place he is accepted as part of the mainstream world. Magic wand to repair his disability? Sure. Invasive surgery to partly repair his disability but prevent access to the one activity he has? No thanks. For some families the decision is going to be similar. It's certainly not up to me to judge them.

I am not arguing against CI - they're a riskier version of ds1's communication aid -and like his aid have the potential to be life changing for some, useless for others - what is there to be 'against'?, but I am arguing against the view that life is always better with them, and the only 'right' decision is to have them.

Exactly, ShoeWhore - it permeates every part of his life. DS2 finds it really hard to play with other children at break times so often sits alone as he can't hear the game. He can't keep up with the phonics at school as he struggles to hear the tiny permutations in sound so he's in a reading recovery group and is not educated with the rest of his class all morning. He can't take a normal swimming lesson. He can't hear assemblies. His balance is terrible so he falls over all the time. No kids want him on their team in PE. He's exhausted so has massive tantrums at home and has huge issues with his anger and frustration.

He does only have to cover one ear though when he doesn't want to hear me telling him what to do!!

MissBetsey - I think (from having watched TV debates etc on this) that that is some of the deaf communities objection to CI though. That they can make a child who functions fluently and without difficulty in their (deaf) community become disabled by being given partial, but disabled hearing in the hearing world. I think, from what I have read, that there would be fewer objections if the implant guaranteed normal hearing - and normal development of speech. One objection seems to be that parents were told to not use BSL with their children so that they could make more progress in speech. But they don't necessarily make 'normal' progress in speech and they lose BSL, or don't become fluent in it. So end up fluent in nothing & disabled everywhere rather than just in the hearing community.

Frusso do you know whether that's the case. That having a CI means you are less likely to pick up on BSL? I can't understand why that would be the case (especially if you had deaf parents) but I have read about it as an objection more than once.

If your dd ever fancies learning surfing I can put you in touch with BSL coaches :)

Choosing to create a deaf child is just wrong. Do they not consider what would happen if the child was or became disabled in some other way and lost their sight or hand mobility? Then they'd have no way to communicate and be excluded from the 'deaf community'.
My friend's son is deaf. He also has cerebral palsy and cannot sign. He's not welcome in the 'community' any more than my mum is because she neither learnt sign language (and you have to pay for classes) nor could she sign for the terrible tremours in her hands. She is to old for a CI and her life is limited in so many ways, especially as the problems of old age get worse.

But limitations there will be. I have given you a very clear example of court proceedings. What happens if you are suddenly taken ill and go to A and E and there is no one to interpret for you

There is a legal obligation for service providers to provide communication support for deaf people in these circumstances. Hospitals have interpreting agencies on stand by. In the worst case scenario, they can use pen and paper to write plain English.

Or, in the case of Ninewells Hospital in Dundee, they can ignore the patient's express request for an interpreter, remove her appendix without ever adequately explaining what was going to take place, and then find themselves being sued to high heaven in the aftermath.

CI is not a perfect solution. Many people still require interpreters years after implantation so the problems around lack of available interpreters would still apply.

I have a daughter born with one hand. There are very few things she can't do (concert standard pianist is the only one that springs to mind) and she has had a lot of opportunities that have come her way through this.
She has trained with olympians/paralympians, been on TV (with Cerrie Burnell), been poster child (with an article she wrote herself age 5/6yo) for a campaign presented to the MPs, modelled for leaflets about having one arm, met famous people, made friends, been put to the top of (long-6-12 month) waiting lists for both unconnected medical stuff and activities... and more.
There is an aspect that the charity for children with upper limp issues is a huge big family and it can feel very much like our own little community. If you haven't been involved in that sort of thing, there is nothing like the support you all give each other. It's a very safe enviroment.
However, even knowing this, she, and I would never choose for another child to have this condition.

My ds has glue ear since 3 months old. At times he can not hear much at all, and what he can hear is like through water. When he's in his worst points, you don't really realise how much harder it is for him, nor how it effects his behaviour.
When his ears are clear (or just after grommets) it's like coming out to a clear day after a storm-you only realise then how much it's effecting him.
But it effects him much more than having one arm effects dd2.

frusso that's really interesting - thank you. I completely agree with you more about giving a child a language to think in - absolutely - and I'm going to muse on that all afternoon (in relation to ds1 who was given a communication aid 2 years ago and went from nothing to being able to use/think in simple sentences).

I know there's a lot of research for people with learning disabilities showing that sign encourages speech and increases the words. Of course that is with Makaton so signed with speech and you don't have the issue of work order and Makaton isn't a language anyway, so slightly different. Also in ds1's case the talker, symbols and sign has helped him speak - he was later to sign - couldn't imitate until 8 - but he signs and speaks in combination quite a lot now.

Actually am going to drop you a quick PM.

Pumpkin - you say that in the worst case scenario in the hospital you provide pen and paper and write it down. Ironically that in your next paragraph you give the example of a deaf woman whose appendix was removed without adequate consent. I've read the reports now. She was a BSL user with very limited lip reading and whose understanding of written English was very limited too. If that's not limiting I don't know what is. So much for how bring deaf is no barrier to anything in life.

There's been a turnaround regarding CI use and signing and I think most CI programmes nowadays would encourage any modality for gaining language. To perpetuate the same old myths is either scaremongering, again, or being behind of the times.