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?

[CHJR]

Yes, cory, interesting point. To continue my peroration () on culture as a parallel to this situation, btw, i have given up trying to teach/maintain my children my and my parents' native language. I do feel guilty, often; it excludes them in a real way from their ancestry and part of their birthright community. But their father is English-speaking, we live in an English-speaking country, they are learning several other languages at school, and my birth language isn't terribly useful except in my birth community. My father is most reproachful, but I feel that MY birth community isn't automatically THEIR birth community. Theirs is Britain.

Yet, I feel guilty because I am not really giving my children the choice, am I? If one of them insisted, I would teach it, but they are young and busy and not interested, it's natural. If I made them spend a lot of time learning this language now, they might choose never to speak it later or they could be very grateful later. If I don't teach it now, even if they adopt it as adults it will never be fully natural to them.

Just to confuse things a bit further, technically my mother's native tongue wasn't the majority language of our country, and as a family we spoke the majority language. She spoke her language to us children when we were small but stopped when we began school. This is actually a very, very common issue in immigrant communities. The deaf child of Deaf parents is always a bit of an immigrant and a diplomat, I'd think.

[nannynewo]

It is a disability. That is because it disables people from doing certain, simple things. Such as, ringing the doctors in the morning to book an emergency appointment and much much more! That doesn't mean to say deaf people aren't happy. It's almost as if you are trying to say that because your friend is happy it makes it no longer a disability, which is not true.

[CakePunch]

It's just a massive over simplification.

[Starballbunny]

Yes it fucking is, I'm very slightly hard of hearing and even that is enough to make you miss the train platform change and feel left out in social situations.

[LottieJenkins]

That is right MDV!
We were told the risks when ds2 was first diagnosed. We were told very clearly the risks which is another reason why we decided against the implant!

[manicinsomniac]

Lottie - I don't think doing that would give me any insight into what it's like really. I would be very disabled by it, I don't have any of the alternative ways of accessing and understanding the world that deaf people have developed. It wouldn't be a fair comparison.

Notthemcrows - that's a very good point about the gradual reduction in the deaf community. I hadn't thought about that. I'm sure my friend probably has though and it certainly wouldn't be my place to put it to her as an argument, I don't think. I'm trying not to judge either way, just to listen to and accept what she says.

Mrs DeVere - thank you for that insight; very interesting.

[neepsandtatties]

That's a very good point NotThemCrows and I think would sway me, however entrenched and happy I were in the Deaf community, to favour cochlear implants for my child.

It brings to mind the situation with people with achondroplasia. It is frequently an inherited condition. If you have achondroplasia, should you have children? If you decide to have children, should you hope for a normal height one or one the same size as you? If you have a child with achondroplasia should you make them have leg lengthening operations to make them taller than you? If you don't see your stature as a disability, then our instinct is to want a child the 'same' as you. If you genuinely believe that you have an equal and enriched life by being part of the 'little' (or Deaf) community, then you wouldn't want different for your child.

[LottieJenkins]

manicimsomniac fair enough!

[hudjes]

WTF! I am deaf and of course for me
it's a disability! it's also not up to a hearing person to suggest it is or is not a disability.

[LCHammer]

Deafness is a disability and to think of it as done 'gain' is ignorant. You gain friends and culture, never as rich or varied as you could gain by hearing.

To decide for your own child that they should be deaf to prove some point amongst your deaf friends is cruel and short sighted. Cochlear implants work beautifully if you out in the time and effort and, crucially, if you don't leave it till it's too late.

I have DCs with CIs, so this is something I have thought through over more than a decade. When I see my oldest listening to mainstream music, like his peers, and my youngest taking part in the school choir, I know any other decision to keep them forever deaf would have been wrong.

My DCs don't speak my own language because we live here now. I had no problem giving up on that part of their cultural belonging. Maybe I'm just fickle? Or rather, care more about my children's wellbeing than about some abstract notions of culture and letting the side down.

[PumpkinPositive]

Manicinsomniac The friend you describe is (presumably) pre-verbally Deaf and it's therefore entirely reasonable for her to see herself as part of a cultural and linguistic minority, rather than disabled. It is all she has ever known and so long as most of her interactions and relationships occur within the Deaf community, then of course she is not disabled within that context.

But the vast majority of people with hearing loss have a post verbal acquired hearing loss. The vast majority of people with hearing loss are lip readers, not BSL users. Lip reading is such an imprecise science, even in optimal circumstances. It can be an exhausting process. The acquisition of BSL can take up to a decade, and for people already struggling with the loss of their hearing, learning BSL, with its own particular topic prominent grammatical structure, is no small ask. Lip reading and BSL classes are often not free, and there is little point to learning BSL if one's family and friends are not prepared to learn it with you!

Many people with acquired deafness are not aware that they are entitled to free communication support at doctors appointments, business meetings and so on. Even those that do know, face an uphill struggle in the face of a society which seems to equate that deafness = must know BSL.

[BrianTheMole]

Deaf people are mostly disabled (in common with any other type of disability) by society rather than 'impairment'.

Yes I would agree with that.

[manicinsomniac]

CHJR - interesting what you say about culture. I'm bringing my children up to be as bilingual as possible (tricky because I'm not fluent in their father's language myself and they haven't met him). Equally, I'm not giving them a choice I suppose, I'm just telling them it's important. But if I let them decide on their own and make their own decision it will be too late. I guess that's similar to a CI decision in a way. The child might agree or disagree with their parents once they reach adulthood but the decision will generally have been taken for them by then.

[Pobblewhohasnotoes]

I have looked after many many children with cochlear implants. We rarely get children in with deaf parents. It's well known that a lot of them disagree with cochlear imHowever despite having an implant, the child will always still be deaf. When they take it off, they are still deaf.

[BackOnlyBriefly]

Do those people who are glad to be deaf claim disability benefits?

I saw it argued once that actual research into curing deafness should be banned because if there were no new deaf people then deaf culture would die. That people who wanted to hear again should be forbidden to.

I get that people who are deaf what to make the best of it and I applaud them for that, but the idea of promoting it as a good thing I find quite disturbing.

[PumpkinPositive]

Deaf people don't tend to go to Deaf clubs or meet at school or in Deaf churches the way they used to

Deaf clubs are still fairly popular where I am, albeit not so much with the "younger generation". Deaf schools are shutting all over the place though, diluting into "hearing impairment" units attached to mainstream schools and/or swelling the numbers with admission of hearing children with communication disorders.

[Pobblewhohasnotoes]

FFS pressed too soon!

*cochlear implants.

Implants change a child's life, it's amazing. But I think some parents from the deaf community see it as making them a'hearing child'. It's hard to understand, but I'm not deaf myself and I only see it from the patient's perspective and the difference it makes.

[Greythorne]

Episode of ER on this precise subject.

Parent of the dead little boy decided again CI and in favour of learning sign language himself to start communicating with his son. A lot of stuff around the politics, deafness not being a disability etc.

[CHJR]

Yes, exactly, manic! As parents we decide all sorts of things for our DC without them really choosing, and of course it's always difficult because we are taking a risk.

What is this about deaf people (and disabled) mainly impaired by society? All that means is that disability is defined as "unable to do what most people can do and what society is set up to enable." It's playing with words. If you want to get beyond the words, you can say: A person in a wheelchair is only impaired in the sense that most of the UK is not at all wheelchair-accessible you might say. It's very shameful that we still haven't made society more wheelchair accessible. By logical extension in the same way it's shameful that our schools teach French instead of BSL. Is that what you mean when you say deafness is a disability only because of society?

[CHJR]

I guess what I'm trying to say is that deafness (or Deafness) is a disability because most people aren't deaf and therefore can't communicate well with them. In other words, deafness is a disability because it is a minority situation. The world is set up for the hearing. (Or the Hearing.) But let's stop playing with the words and go back to the main issue.