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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

to think that being deaf is not a disability?

431 replies

manicinsomniac · 12/01/2014 17:10

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?

OP posts:
DizzyZebra · 12/01/2014 21:43

I must have missed a few comments saying that it should be the childs decision, but what stringbean says is correct.

It is a big decision though and i understand that reaction, it was mine at first! But in not giving a CI you are removing more choice than if you were to give a CI the child later did not want.

A 16 year old without a CI who decided they want one would have to go through the operation, potentially take time off school or whatever theyre doing when theybdecide they want it, They have to go through speech therapy, there is a much higher chance of it not even working, and a very high chance even if it does work, of it not being as effective.

A 16 year old with a CI who decides they do not want the CI simply takes off the outer device and no longer uses it. If they wish to have the inner parts removed this can be done and can be planned more easily.

GailTheGoldfish · 12/01/2014 21:49

I really think it's up to an individual how they want to define themselves and what terminology to use to describe themselves. But whether or not you think 'Big D' Deaf people are disabled or not there is such a thing as Deaf culture - a shared language, shared experiences, cultural norms and poetry and art has been created out of the experience of being Deaf. The two things are not mutually exclusive.

HeartsTrumpDiamonds · 12/01/2014 22:02

You can terminate a pregnancy almost to term if the baby is deaf.

You are fucking kidding me?!?! That has got to be the most disturbing thing I have read on this whole thread.

It has been a real eye opener. I was great friends (lost touch now unfortunately) with a guy who was quite deaf and he was great to go out to the pub or clubbing with because you could always have a conversation with him no matter how noisy - due of course to his lipreading skills!

Spero · 12/01/2014 22:14

Pumpkin - you misunderstand me.

I do not say declining a CI is turning away from the hearing world.

My complaint and worry is far more general - that to create a community that functions independently of the hearing world is, I worry, a sign of turning away from the able bodied who have historically and to date often behaved like total wankers.

So I 'get' why adult deaf people want to do that.

What I don't 'get' - in fact what makes me angry - is that some deaf people want to impose that upon their children, deny them any future choice in the matter if they were a child who could benefit from CI. And then dress that up as deafness NOT being a disability but being a positive life style choice.

For them maybe. But I don't think ANY human being has the right to make that choice for any other human. Children are not the property or the playthings of their parents.

Ledkr · 12/01/2014 22:17

My little girl is partially deaf.
She is amazing and funny and full of life.
BUT. She is disabled by her condition as it affects her in many many ways.
We will do whatever we can to help her and improve her hearing/speech until she is old enough to make up her mind.
To think we could have terminated her makes my heart literally hurt.

Custardo · 12/01/2014 22:20

there is a definite deaf community for those who want to be part of it, this is is a means of support. In this context i understand what the o is saying and tbh i am not certain everyone has read the op. just the title - i was outraged at the title ready to come in guns blazing, but the op read quite differently

SallyBear · 12/01/2014 22:23

YABU

Two of my children are deaf. Both have conductive hearing loss. They both wear BAHAs (Bone Anchored Hearing Aids). It's a disability. OP - You try living your life with severe deafness and tell me if you still think that being deaf ISNT a disability.

IceBeing · 12/01/2014 22:57

Off topic but the comments about learning sign language early made me think of it. My DD did baby signing and still occasionally reverts to using signs when she is very distressed or confused. Its almost like signs are her first language...

notallthere · 12/01/2014 23:01

It is a disability, but it is a culture too.

It is clearly in the best interests of the child to have the implant, they can always turn it off when they are old enough to decide.

BlueStones · 12/01/2014 23:05

I know under employment law, only the employee with X trait/condition can decide whether or not to describe it as a disability; the employer cannot unless the employee does. At least, that's what our in-house legal dept say. So if OP's friend says that her deafness is not a disability, then it is not.

As regards her daughter; yes, that's not straightforward. This situation must be hard for all of them.

GimmeDaBoobehz · 12/01/2014 23:16

It is a disability .but I can see why friend says this - not many people like to see themselves as disabled.

This is coming from someone registered blind.

Spero · 12/01/2014 23:26

So under employment law a disability is something defined entirely subjectively? That is fucking insane if true.

BlueStones · 12/01/2014 23:39

That's what our lawyers say, spero. It's up to the employee, apparently.

Spero · 12/01/2014 23:44

Christ on a bike.

So when I was called into see the University doctor when I was a lecturer so she could assess me as a 'fire hazard' I could sue for unwarranted assumption that I considered myself as disabled and unable to escape building on fire?

WestieMamma · 12/01/2014 23:50

I think it depends on whether you are a potential 'fire hazard' to others or just to yourself. Not work related, but I was asked to leave a very old timber public building because of my disability and the fact it would burn faster than they felt I would be able to get out. I sued them and won. So long as I didn't need their help to evacuate it my decision to take as to whether I was too disabled to be there, nothing to do with them.

WestieMamma · 12/01/2014 23:50
  • it WAS my decision to take
Katkins1 · 12/01/2014 23:56

The only reason that I chose not to have CI is because have constant ear infections and problems with the inner ear, and I find it hard enough without technology stuck in my ears, too.

I'm at university, so need my hearing aids. But they don't work very well, and I dislike them. I went deaf after I'd learnt speech; I can understand that concern for a child.

If my little girl were deaf (she's hearing), I would opt no to CI because I know the pain and problems associated with hearing aids and so on.

But it would be a very difficult choice. Each option comes with its pros and cons. For me, I've had issues with audiology, so I'd choose to not put her through that.

DizzyZebra · 13/01/2014 01:48

Katkins - I'm not trying to say you should do anything or not but cochlear implants dont go in the ear.

DizzyZebra · 13/01/2014 01:49

Or are you talking about the internal part?

The outer part doesnt go in the ear like a hearing aid thats what i meant.

tiredoldmum · 13/01/2014 03:09

Yes, it is a disability.

Hearing people tend to tick me off on this subject. They think because I can speak clearly and wear hearing aids I am cured so they mumble, talk to my back,, cover their mouths when they talk, take very slowly like I'm an idiot, accuse you of not listening, and an entire range of idiotic rude things.

Oblomov · 13/01/2014 04:15

YABU. Of course it us a disability.

DizzyZebra · 13/01/2014 04:19

tiredoldmum I don't understand how it feels obviously (I am a hearing person) but i know exactly the sort of behaviour you mean - My daughters implants are not always immediately noticable, and when people realise she'd deaf they suddenly start talking to her like she's stupid.

It pisses me off so much. I'm always so relieved when we go out and we end up talking to a decent person.

One person assumed she was blind too... He said he thought all deaf people were blind as well. I just stood there like 'And you had the cheek to talk to DD like she's the stupid one?'

Biedronka · 13/01/2014 04:23

Agree that being deaf is a disability.

My sister is deaf and has been since 18 mths old. She's finished college and Uni, works with disabled children. Is fiercely independant and freely admits she'd rather be deaf than hearing but also will tell you she has a disability.

Regarding CI - my mum made the decision, many many years ago, that sis would have it done when she was 5. She was one of the first in the UK to be given a CI, Mum believed she was doing the best for my sister. It worked but Dsis would often remove the magnet from her head to stop the sound - she never liked it but agrees it has assisted her in life. That said she had it permanently removed when she was 17 - the reason it had to be operated on again was a medical one but she told them she didn't want it reconnecting ever again.

GoshAnneGorilla · 13/01/2014 04:36

Deaf people (without other disabilities) cannot compete in the Paralympics as this link explains:

www.deafsports.org.au/FAQRetrieve.aspx?ID=45060&Q=

The link also says "Deaf people see themselves as members of a linguistic and cultural minority and do not see themselves as disabled."

So it is far from a viewpoint that the OP has pulled out of their backside.