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?

[GobbySadcase]

You do realise that the 'hearing' you get from aids or ci isn't a natural sound?

It can be very disorientating in busy public areas. I've had to sit down as it makes me dizzy having every background noise be amplified and merge into an unpleasant roar.

[TinyTwoTears]

Deaf people have struggled to have their own language, historically. Perhaps that's why the op's friend is so protective of it.

[IHaveSeenMyHat]

It's both.

Lots of deaf people do believe that the deaf community have a rich language and culture, and believe that deafness is not a disability that needs "fixing" with cochlear implants. It would be offensive to say that they are wrong, IMO.

But, for most people, deafness can be very disabling and places numerous barriers when it comes to functioning in wider society.

[neepsandtatties]

I'm surprised of the ignorance of some of the posters on this thread (not the OP). The deaf community is embraced by some people as an alternative society and the benefits are actually described very well by the OP. They do not see themselves as having a disability. Google 'deaf community and cochlear implants' and you will see that many within the community have refused the chance of having their hearing restored. The contention comes when they refuse to allow their children to have hearing implants. The scenario the OP describes does actually frequently occur. Some of the deaf community express a preference to have a deaf child, so they will be part of the same community as the parents.

en.wikipedia.org/wiki/Deaf_culture

[foslady]

Wow OP.......so many things you don't understand.

[CHJR]

I don't see why it can't be both a disability and a culture. And I don't see why a child growing up with Deaf parents (as those who call it a culture capitalize it in the USA) can't be a native signer and still have implants. The fact that the one parent feels afraid to let the child become different from herself implies very strongly that she does fear the child would leave them and prefer hearing people in later life, which suggests mother feels it's a disability even if she SAYS it's not. Culture can be chosen. Disability, not.

[manicinsomniac]

No, I wouldn't choose for my child or myself to be deaf. I doubt anybody who can hear would.

But equally some (again, I don't know how many) deaf people say that they wouldn't choose for themselves or their child to hear.

[SauvignonBlanche]

You might want to re-word your thread title, it doesn't reflect the content of the OP.

[LoveBeingCantThinkOfAName]

My understanding is that there is deaf and then tgere is Deaf. Your friend would fall under Deaf, a section of tge deaf community who embrace and are very against tge implants. I believe it's generally people born deaf tgat are more likely to feel this way. They just see it as a part of who they are, like eye colour or hair colour.

You certainly cannot label every single deaf person tge same, just as you couldn't tge otherway round.

[lifeissweet]

My DS is profoundly deaf bilaterally. He has one cochlear implant and wears a normal digital aid on the other side.

He is very much part of the deaf community. He goes to a deaf a school and is bilingual BSL and speech. At the moment his BSL is dominant, but he is gaining more speech all the time. I am aware, though, that it is sometimes a real effort for him to listen and talk to hearing people without any sign support (he is 8, by the way)

I would say that for him, it is not a disability in that he wouldn't say he has lost out on anything. However, as his parent I would definitely call it a disability. It is harder for him to do all manner of things that other Children do. We have to ensure that clubs he goes to and activities he is involved in have someone with a limited amount of sign just so he can make himself understood (he finds it harder to speak clearly if he's upset, or the acoustics are wrong, for instance)

I do think there is a perception from both hearing and deaf people that implants 'cute' deafness. They don't. They enable a deaf person to access some hearing, but it is not the same as a hearing person experiences and it does take an enormous amount of extra effort and listening for my DS to use his available hearing.

So yes. It's a disability and I am happy to class it as one - if we stopped labelling it a disability then all of the extra support, amazing special school and SALT staff would go. No thanks!

[joanofarchitrave]

Cochlear implantation is an operation and carries risks, including menigitis and cerebrospinal fluid leak, also damage to the facial nerve which controls all the muscles of facial expression, and tinnitus. It requires the surgeon to cut the hearing nerve in the implanted ear, so if a person had some hearing or sound perception, they will definitely lose that. It doesn't always work and the development of language understanding/spoken language isn't a given, especially at an older age like 9.

Having said all that, I would want it for a deaf child of mine. But that's easy to say, since I am a hearing person and find it hard to imagine being without hearing. I do, however, understand why someone might not choose to have this done to their child. It is a deeply uncomfortable thing to take a healthy child who has the potential to have a happy productive life and order such an invasive procedure. Look at vaccination and what agony that causes.

[FreshCucumber]

OP it is well known that some deaf people see themselves as part of a community quite separate from'us' the hearing people. They meet up, gave their life part of that group and feel very happy about it. Hearing would be a very big loss to them as they wouldn't be part if the group anymore. A but as if you were told you couldn't be English anymore if that makes sense. This is so defining to them.

So it is understandable that your friend wants her ds to be part of that community, HER community, her life really.
It is just as understandable that her ex wants his dc to be part of HIS community, the hearing people.

I think this is a decision that is very personnal and that the parents shouldn't take any decision for the child but take choices that will leave as many doors open as possible. Maybe the CI would allow that child to experience the world as a hearing person whilst he could carry on with the BSL with his mum. This way later on he will be able to choose whether to keep the CI or not and in which community he belongs.
Whether he would get a 'nice' experience of the CI will prob depend on the severity if the deafness I would imagine, iehow much he wil be able to hear.

But the reality is that one if the oRent is likely to feel pushed away whatever the decision is taken. No CI and the dad will feel that his dc Ian 't really part of his life. Have a CI and his mum will feel that way. :(:(

[VampyreofTimeandMemory]

this thread really confirms how eager some people are to see the worst in everybody. OP I disagree that being deaf is not a disability, I think I'd feel it was. However, there is blatantly no malicious intent behind your post so don't see the need for the horrid comments. Think it's just for the sake of it tbh.

[CHJR]

As for the child ending up in two cultures... well, lots of us do and we benefit rather than lose, I think. Any child with one foreign parent, let alone two, has a mixed background. I even feel my DC qualify as "mixed culture" (using the word culture very loosely) because DS2 has significant special needs, and yes, that makes us a little bit "foreign" in the world, it gives us a completely different point of view sometimes. It's not bad to be different from your parents any more than it is bad to be like your parents and different from outsiders. It's normal.

[joanofarchitrave]

Oh God! Just to be clear, I am very pro vaccination!

[manicinsomniac]

Thank you for describing what it's like to hear with aids gobby

Thank you to those who have explained what I meant better than I have.

[VashtaNerada]

OP, you really don't deserve some of these reactions! I've certainly heard deaf people say similar things in the past. I suppose the answer is for everyone to choose their own definition.

[Iamsparklyknickers]

I can't even pretend that I understand the deaf community - not a negative - I just don't comprehend the negativity towards treatment, although how could I? I'm not part of it.

The fact is there is a very definite, established community that has a high end of extremism and can be quite militant. It's gone past the point of standing up for who they are and being accepted, to, in some cases, incredibly isolated and closed off.

There are some deaf parents who would rather their children were born deaf. It's (imho) comparable to Welsh parents wanting their children to be Welsh, the identity is so strong within the community.

Personally the only thing that would put me off getting a CI for a child is that I'm pretty sure it puts them at risk of not being able to benefit from future advances in the technology - that's countered by the fact the younger they are the better their brain adapts to filtering sounds.

Tough one

[FreshCucumber]

The comment about the fact it's different to be completely deaf from birth us different from having become deaf later in life or being partially deaf us a really good one.

It depends on where the child is. Is he completely deaf and can't hear at all it does he have some hearing?

[olivo]

I am 50% deaf. I am neither part of another community or culture, nor have I she any gain since I became deaf (in my twenties) I am clearly lucky that my work place do recognise it as a disability and do all they can to help me do my job properly. The children I teach are also incredibly understanding. However, I have to declare it as a disability when . Applying for jobs, not as a gain!

[procrastinatingagain]

I think that if your friend does not wish to define herself as disabled, then that is for her to decide.
Just out of interest, you can find out what it is like to hear with a cochlear implant if you google it, it is a very odd metallic sound. If the child has been deaf all her life then I can understand why the mother might be against her having it. It's not for us to judge anyone else's quality of life.

[SconeRhymesWithGone]

I read that article too, neeps. I was aware of the issues about deaf culture and cochlear implants because of a close friend who had to make that decision for her child.

What I did not know is this, from the Wikipedia article:

Deaf culture is recognized under article 30, paragraph 4 of the United Nations Convention on the Rights of Persons with Disabilities, which states that "Persons with disabilities shall be entitled, on an equal basis with others, to recognition and support of their specific cultural and linguistic identity, including sign languages and deaf culture."

[procrastinatingagain]

cochlear implant simulation

[manicinsomniac]

Yes, I agree that it would be a totally different scenario to lose hearing later in life. Learning signing as an adult for example, must be much harder and you would really miss all that you were used to.

Cucumber - both mother and child have some background (ambient?) hearing of very loud noises.

[FreshCucumber]

The thing is this isn't about growing up with 2 different cultures. My dcs are bicultural and you can mix that quite easily.

In this case it's about being part of acommunity and it is much harder to be part of two communities that are completely separate and see each other as being exclusive from each other.