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 need to go back and find Frusso's simulator. I had a listen to this one: and needed 12 channels to begin to understand the speech (& I'm fairly used to communicating with people with disordered speech). No doubt I'd get better with practice but I can see why it isn't a quick fix.

Oh I found the same one

This is really interesting as well auditoryneuroscience.com/prosthetics/noise_vocoded_speech

And this says that the average implant is like the 4 channel simulation with the best being 8 channels. Bloody hell!!! Is that true & up to date??? (I'm guessing there's a lot of variation) It must be exhausting communicating if so. (And I'm crap at lip reading from that simulation).

I know from ds1's communication that he has a preference for the easiest and quickest way to communicate- even if it isn't the most effective. In fact even if it isn't very effective at all. So his first choice is speech even though he is completely incomprehensible to pretty much anyone except me. And even with me he is stuck with very fixed phrases. He can say a lot lot more and with a lot more flexibility with his communication aid, but it takes more effort and so he isn't always keen & it's definitely not always first choice. Depends how important to him what he wants to say is & who he wants to understand.

If that simulation is accurate I can see why the Deaf community might have concerns that they would be replacing an easy to use, rich, language with something that was very hard work and difficult to obtain fluency in - even if you had the advantage of a wider audience (although I suppose they need to be a willing audience).

Reading all this has made me want to learn BSL so at least when I meet someone who uses BSL I can be the one struggling to communicate for a short while.

Yay I got sentence 2 on 4 channels with the video as well (no hope without the video). But bloody hell it takes some concentration.

DizzyZebra - "Mummy i'm tired of listening to you now so i'm just going to take this off and go to sleep"
:) we used to get that too but more often she'd disconnect when she was getting told off and sit with arms crossed and a smirk on he face :)

Did your sisters fail when she was 17?
It should have been changed earlier, apparently. Dsis started to have headaches and they found some componant in there was corroding. I mentioned she was one of the first in the Uk to have it done so they probably use better quality materials now.
Anyway, she wasn't really using it much, it was left off more than she used it and had decided she didn't want it. So when it came to choosing to have it replaced, she simply didn't want to.

OP it was a slightly trite example I gave I admit. But it doesn't alter the fact that I strongly believe that parents owe their children the opportunity to fully experience the world as far as they possibly can. To be honest it disgusts me that a parent would deny their child the chance to hear for ideological or political reasons. I can't fathom limiting your own child's chances in that way. The mother in question is making a choice that should not be hers to make, especially when it is time sensitive. This is the kind of case I can imagine reaching court and ending up on the national news.

Edam I think many people would feel uncomfortable that someone is making this choice for cultural reasons rather than medical ones. I'm one of them.

So you are not alone in other words!

Simulators are just that. What a hearing person thinks a deaf person hears via a CI. It doesn't explain how the hearing changes and becomes closer to 'normal' over time. Or else a child with a CI wouldn't be listening to music like anyone else and modulating the voice to speak normally and sing nicely. They may not be able to distinguish five nuances between sounds but then neither do I. Rolling out further examples of how 'imperfect' CIs are is just perverse. You can't know many children who use them well.

biedronka we had that growing up too in our house
Not much anyone could do about it either

Thanks Time - but I feel guilty even saying that, because I'm a hearing person who has no experience of the Deaf community (the sort of community the OP's friend belongs to, I mean, I have known a few hearing impaired people).

Balaboosta, I don't think I've judged the situation at all? I judged all the people we know who have been saying things like 'how can you intentionally keep your child disabled?' precisely because they are coming from the same position of ignorance that I am. I have no idea what the right thing to do in this situation is. All I've said (I think) is that it's a very sad and difficult situation and has caused a lot of conflict.

What I said that was wrong is that I was questioning whether being deaf was a disability. That was unreasonable. From the testimonies on here it very clearly is. There are some Deaf people who are not disabled by their own decision and definition and it so happens that one of these is the only Deaf person I know. So I was wrong.

But I didn't judge her situation either way.

Well CI implants presumably get better all the time and I also saw an argument for holding off because super duper near to normal hearing technology is around the corner which wouldn't be able to be used in someone with a cochlear implant. So again it's not a straightforward decision.

I'm not being perverse LC because I am not arguing 'for' or 'against' having CI. As I have repeatedly said imo it is a decision to be made by an individual given their set of circumstances. I have major issues with the assumption from many on here that a decision not to implant is always the wrong decision. It's a complex decision & to assume that having a CI comes with no potential risks or adverse outcomes is naive imo.

Look being tolerant is wonderful. I really mean that. But there are occasions when we shouldn't be tolerant, mainly when we see harm being caused. I would argue that this is just such a time.

To flip the argument head over heels: your deaf friend from her perspective says that being deaf is a gift because of blah blah blah. The majority of people have hearing and are saying that having hearing is a gift because of blah blah blah. Being deaf undoubtedly causes difficulties for many people. Why should a child be subjected to that unnecessarily? The child may grow up and choose to refuse replacement CIs but that is their choice made for their own reasons. Not the same as that choice being taken away from them permanently because the CIs have to be inserted in childhood (from what I understand from this thread).

I would go as far as to say that refusing this is neglectful and abusive and I don't say that lightly. But that is how strongly I feel about it. I find it distressing to think that a child could suffer permanent deafness because of misguided liberalism and 'tolerance'. I feel so sorry for the poor child caught in the middle of all this, torn between the desire to hear and the threat of disappointing mum.

Reading your OP again I am astonished at the selfishness of this woman. Would she reject her own child or see her as less part of this community just because she has some hearing? Does she want this intense bond with her child at the expense of him or her being able to hear and spend time outside the deaf community? It sounds a bit like she wants them both to live in a little bubble.

I don't understand that view and I don't think many people would. For the first time in my life I can write the immortal words 'PC gone mad!'

Did you read the list of potential problems with a CI? I linked to this earlier but this is a comprehensive list from the FDA (so no political pressure either way) www.fda.gov/medicaldevices/productsandmedicalprocedures/implantsandprosthetics/cochlearimplants/ucm062843.htm
I would have thought that list was enough for people to realise it's not a simple decision.

And tbh there are practical problems in the above case. If the child's main residence is with the mother who is going to do the necessary SALT? The NHS isn't going to provide enough hands on therapy - parents are expected to do that. How's the mother going to do that? How effective are CI's if the child is spending a large chunk of their time in a BSL environment (genuine question, one I haven't been able to find the answer to)?

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.

My daughter has one she can wear in the pool. I have no idea where its from. I saw a video on her dads tablet of her in the pool and noticed she seemed to be hearing and asked why shed got her implants on and he said it was a different one he'd bought. She does have to wear a swim cap over it though i assumed to keep it on.

Bie Haha, I remember being in town, DD tantrumming. I told her to stop it etc. She took them out.... So i signed... And she TURNED HER BACK ON ME!! I was like WTF do i do now? Everytime i went to go round in front of her she turned back around. I ended up sat on the floor. OH said 'I wish i could do that'.

To me BSL word order makes more sense than English word order.

Me too.

I'm dyslexic and other dyslexics seem to find it totally logical as well, I think it helps to think visually.

FrogStarandRoses

No I don't know that, I was responding to the poster who said I was assuming mum was right and dad was wrong. From what has been posted the child has got to 9 years old without a CI, the parents are no longer together, dad wants child to have CI.

DizzyZebra

Ah the ultimate Deaf culture response. As a mother you can turn her head, but it is the ultimate, 'I'm not listening'.

The OP said that she thought it was a CI that the dad wanted the child to have done, is she sure its a CI and not a BAHA (bone anchored hearing aid), because that's a different thing entirely.

I have a hearing loss - not severe enough for sign language but need hearing Aids and have to work hard at hearing - lots of concentrating and always making sure I'm in the best position to be able to hear people etc.

It is a disability. Everytime I do conference calls or video calls at work I am nervous in case I will find it hard to hear and make a fool of myself in a professional setting.

Bumps I have a mild low frequency hearing loss. I went to a 40th in a restaurant on Saturday night and by the time I drove home I'd gotten a pounding headache as I'd strained to hear conversation above the general restaurant noise. I don't wear aids, but two of my DC do. They have conductive hearing losses and it is a definite art to focusing on what you want to hear. It takes my DD longer to process sounds in a noisy environment of say 60dB, over a quiet atmosphere. So you can imagine what a secondary school classroom is like, even with a radio aid!

I have a question for anyone in the know about CI.

If I had to make this decision I would want to know the potential risks and also how likely it was to work. I found the potential risks list quite easily with a google. The 'how likely it is to work' (or perhaps I should say how well) seemed harder to answer. What I could not find at all was an answer to my question of last night - what effect does spending a lot of time in a BSL (ormote specifically I guess non-oral language) environment affect the success of a CI. The data on successes seems to be taken from CI given to children to hearing parents - so children surrounded by speech the whole time. It did say that there was more success when teaching used an oral rather than total communication approach. I assume data specifically on CI's given to children being raised with BSL as a first language is sparse because it's a not a common situation.

But anyway I was left with the feeling that if I as was a hear

Hearing parent making the decision there was quite a lot of data/studies to help me make the decision - and weigh up the likelihood of success. If I was a BSL user though sharing my home with no hearing people using speech it would be much harder to work out the likely benefit as the data doesn't seem to exist.

If anyone knows of any studies I'd be really interested to see them.

And I think if there is limited (no?) data showing the likelihood of success for a deaf child being raised in a BSL environment it's a bit rich of us to sit back & describe people as PC or stupid or abusive. I

I wouldn't be that keen to make a lifelong decision for my child without some understanding of the likelihood of success for them Success rates & factors affecting success (or even potential benefits) for a deaf child in an oral environment are not necessarily the same as for a deaf child living in a home where the first or only language in used is a signed language. The only comments I could find was suggested that they were likely to be different, but I couldn't find how or by how much.

Well, er yes it impairs a basic sensory need.

did you know children in the 70's were put into care homes still sometimes purely for being deaf?

You are being unreasonable.