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?

Bie - My daughter takes hers off when she's fed up of listening to me And even tells me so! "Mummy i'm tired of listening to you now so i'm just going to take this off and go to sleep" ...."Ok"

It is hard though, Because of how well DD copes day to day it's easy for even me to forget. Her speech is so clear and she's ahead in every subject. I had a friend and her partner stay over one weekend and even just having two extra people made it much harder work for her to listen to things all day, i felt guilty because i totally didn't think about how tiring it was for her until evening.

If she wanted to stop using hers when she is older i would totally support her in that.

Did your sisters fail when she was 17? One of my daughters failed last year and we had it reimplanted which obviously was not something we wanted to happen at all, and was due to a faulty compound in the internal part. Hoping it doesn't happen again, although my understanding is that most do fail at some stage, just didn't expect it to happen so soon but no one knew about the faulty compounds.

I've taught in a school with a unit for deaf children and have encountered the attitude to which the OP refers. In one class I had 3 deaf students, two of which had implants, one more successfully than the other and another was profoundly deaf, whose parents had declined an implant for the reasons in OP. The direct communication I had with the 3 girls was mixed. One could manage without a BSL signer, another had limited communication, and the other was totally dependant on BSL, and couldn't articulate useful speech sounds which is very isolating in the wider community and put her at a disadvantage in that regard, so despite the arguments about culture, I would still consider it a disability as it restricts normal opportunities that the majority of society can access.

but my main issue is the war between the parents. I don't see why being able to hear (IF that is what the op does) would mean that the child would have to leave the deaf community, assuming that she can lipread, sign etc

A cochlear implant (CI) destroys any residual hearing in the ear where the implant goes. So when the outside bit is taken off the child is more deaf than without a hearing aid. Ditto for swimming, can't wear a CI in a pool.

Your child can not take part in contact sports afterwards, so can never play rugby, Judo, wrestling.

It is a major op sticking part of the device in to the cochlear and another bit under the skin, there is a risk of partial facial paralysis.

Facial expression is a big part of BSL. If effect it would be like a hearing person having an operation that might leave them talking like a dalek - unable to modulate their voice, give expression, surprise or even use some adjectives. What operation would you go through with those risks?

For me it would have to be life saving or fairly serious.

If a child is going to have a CI the best time is prelingually, the older the less benefit. 9 is quite late, adults have them fitted but it is the choice of the adult. In most families CIs, use of sign/oral education are discussed when the child is young.

CIs are not suitable for all types of deafness. The implant is in to the cochlear which is connected to the auditory nerve which sends the hearing 'signal' tot he brain. If that nerve is missing or damaged a CI won't make any difference.

That is not to say CIs are not a life changing invention. The posters who have children with CIs will tell you about that.

For some people it is the difference between existing in a hearing world and living in it.

I think there is a move in society to normalise disability to the point, sometimes, of not thinking about the individuals. This is thankfully changing, but, have a look at photos of children affected by thalidominde, in the 1970s they all had prosthetic limbs fitted, look at them now as adults in their 50s and few if any use prosthetic limbs.

This sounds to me like ex is just trying to hurt mum through dd. Why wasn't it discussed when she was 2? Why, if she is functioning well in deaf and hearing worlds why does he want her to have a CI?

This sounds to me like ex is just trying to hurt mum through dd

MN at its best - if a man and woman disagree, the man is a bullying arse, and Mum always knows best.

A CI destroys any residual hearing. If that residual hear

... hearing was any use then the child wouldn't be implanted. You have to be pretty deaf with pretty useless residual hearing. I wouldn't use that argument for scaremongering.

I can understand the medical arguments as outlined so clearly by sashh and others and they are serious objections. It just seems a pity that it is getting caught up in an argument about my culture/your culture in this family.

You are right, op, of course you are. [sarcasm]

My friend not being able to hear her young dc when they call out to her at night is not a disability.

Not being able to hear a smoke alarm, a fire alarm, or anything else for that matter, with no hearing aids in is not a disability.

I'll go tell her.....

It's amazing that a lot of people here who are calling the OP fucking ignorant and so on don't seem to appreciate that she is taking a point of view that is sympathetic to the deaf community and one that many in the deaf community hold themselves.

You may not think the OP is right. But you might at least try not to miss the point.

OneHolyCow I saw a documentary about Rita Simons (Roxy Eastenders) who has a deaf daughter. She was trying to decide if she should go ahead & get her the CI. She spoke to a community of deaf people who used hearing aids & sigh to communicate & they were dead against the CI because of the reasons you state.

Rita was worried that if she had the CI she wouldn't be accepted into a deaf community.

Can't remember what they did in the end.

I think, to the world at large, deafness would be considered a disability. It is for the individual concerned who has hearing impairment whether they consider it a disability or not.

Actually sorry, Rita was all for it (the CI) Dad was more reluctant.

My god daughter swims with her implants - she puts a freezer bag on the outside bits and tucks into her swimming cap. She also skis, horse rides, she can have a conversation on the telephone and is doing well at school. Her mother has vastly increased the extent and range of experiences her child can have via CI.

Agree with NotNew - it is up to the person who is deaf to decide whether they have a disability or not. Cochlear implants to come with some potential problems as well (wasn't there a suggestion of an increased risk of meningitis for example? ) The deaf culture is a strong culture - it has its own language - BSL is not English.

Surely she could do all that without implants spero? One of ds1's surf instructors is profoundly deaf - they go out the back together and catch big waves, and he (the coach) did really well at a surf competition in Hawaii. I'm not using that as an argument for not getting implants - just saying I'm not sure it makes any difference. I usually manage to have a laugh with him despite having very limited BSL.

The culture/disability thing comes up with autism as well. In my son's case I have no doubt it is a disability & he has made it clear he is frustrated by the things it prevents him doing (such as speaking). HOWEVER if someone is able enough to decide that, to them, it is not a disability I'm happy to accept that- for their particular case.

She wants to wear her implants. She wants to hear. I imagine it would be quite dangerous skiing when unable to hear what her instructor is saying.

And this is the point. It is about choice. If it is up to the person to decide if they are disabled or not, that is all well and good. But when they start imposing their choice on other people that is NOT well or good.

Children are human beings in their own right and should not have their options limited because their parents have a particular view.

But we all make decisions about our children. My children have not been brought up bilingual - which is effectively the choice made above - yes I have limited their options in not bringing them up bilingual - but I haven't been criticised for it.

I agree with sassh btw - it's an individual choice.

And I've been a bit simplistic with my bilingual argument because being bilingual doesn't affect other activities I can do, or pose any health risks. CI can be life changing yes, but they aren't always miraculous & there are other valid choices - the non-disabled world seems to find that hard to understand.

I also know people who have severe VI who do not consider themselves to have a disability - and would presumably therefore not necessarily fling themselves at sight restoring surgery if it came with risks, or removed their options of being able to take part in certain activities.

IN terms of skiiing I do know people with very limited understanding & no speech who have been taught to ski - I would happily give it a go with ds1 if we lived near snow, so again I don't really see why CI are needed to learn to ski.

Have no argument with someone wanting CI and benefitting from them, just disagreeing with the idea that you can't ski, surf, swim, horse ride or do whatever unless you have them. Yes it can be harder to find a coach, but that's a different issue (and tbh rapidly changing, lots of sports are enthusiastically finding ways to widen participation)

You can do all sorts of activities if you're deaf and don't wear aids or implants. But your life is much more limited and the range of options available and kind of human interactions you can have more limited. Head in the sand to think otherwise. And to impose it on others, willingly...

Define "limited"

I don't really need to define it, do i? think of all the things you do during the day abd then imagine doing them deaf. An eye opener. All your face-to-face interactions via third party. One who can use BSL. Let's not be disingenuous about the disability here.

I will give you an example from my experience.

I represented a deaf mother in child contact proceedings at court. She was unable to communicate with me or the Judge without a BSL interpreter. The court was not able to find one in time. Her hearing had to be adjourned.

At enormous financial and emotional cost to her. Her ability to participate in legal proceedings was certainly limited on that day.

I just don't understand why we cannot celebrate the courage, resilience and tenacity of the disabled without at the same time having to pretend that they are not disabled.

Sorry didn't read properly

to say you didn't bring your child up to speak two languages is the same as you didn't permit your child to grow up hearing, is just bonkers I am afraid. Not the same example AT ALL.