to think that being deaf is not a disability?

(432 Posts)
manicinsomniac Sun 12-Jan-14 17:10:15

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?

FreshCucumber Sun 12-Jan-14 17:46:39

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.

FortyDoorsToNowhere Sun 12-Jan-14 17:47:14

I am glad it is a classed as a disability, as people who are deaf are protected under the DDA.

It is a disability, but some people don't like thinking themselves as having a disability.

LottieJenkins Sun 12-Jan-14 17:47:37

You are going to get my first biscuit of the year!!!!! of course deafness is a disability. My 17 year old son is profoundly deaf as well as having other disabilities. His deafness affects the way he is every day of his life. It affects his balance, and how he sees life! The deaf community is a very special place. My son has never been offered a CI because his hearing is the same with his hearing aids. I would never have let him have the CI when he was a child because it has to be his decision that he makes when he is old enough to understand the implications!!! BSL wasonly recognised as language in the last fifteen years. It is an amazing language and I am proud that my son and I use it!!!!

CakePunch Sun 12-Jan-14 17:49:23

One consideration for a whether to implant child being raised by bsl using parents is that by giving them a CI and concentrating on oral English they are 'disabled' in the sense that it will always be harder for them. most children with CI will have some sort of language delay at least initially. Teaching a child bsl from day one (if the parents are fluent) will mean the child has a strong first language where they will be completely competent.

Bogeyface Sun 12-Jan-14 17:49:23

My father has bilateral cochlear implants, much later than he should have done mainly through fear. He is also blind. He is far happier with his implants (had to have special funding to get both done due to his blindness) than before.

However SIL has been deaf since birth after he mother contracting Ruebella during PG. She is definitely part of deaf culture, BSL is her first language, she mainly spends her time with deaf friends and would probably not want to be hearing, she knows nothing else.

Neither is right, neither is wrong. But as for the OP I would say that the mother is wrong for deciding that the child cant have the op simply on the basis that she wouldnt want it. And yes, of course deafness is a disability!

Bourdic Sun 12-Jan-14 17:49:47

Years ago I saw a film called Children of a Lesser God - it deals with the issue of the concept of deaf culture and whether deaf people should be encouraged to learn to speak or not. It's American and overlaid by a romance but I would recommend it to give a take on the debate which , as some have said, is very complex

Chippednailvarnish Sun 12-Jan-14 17:50:29

So if deafness isn't a disability, why wouldn't you choose for your child to be deaf OP?

camsie Sun 12-Jan-14 17:51:27

YABU

BalloonSlayer Sun 12-Jan-14 17:52:49

A good friend of mine had profoundly deaf parents, and the family's whole social life was around the deaf community.

I have definitely heard of deaf people feeling that people who have cochlear implants are in some way letting the side down.

A cochlear implant is not a miracle cure though and it does not mean that someone with one is suddenly the same as someone with no hearing impairment, which is what a lot of people seem to think.

Bourdic Sun 12-Jan-14 17:54:59
charitygirl Sun 12-Jan-14 17:56:15

Meep - so deaf people who espouse these views are 'ignorant' are they? What exactly are they ignorant of - their own lived experience?

manicinsomniac Sun 12-Jan-14 17:56:35

chipped, I find that a strange question. There are lots of things I wouldn't choose for my child to be that are not disabilities - mainly because I feel it would affect how I am able to relate to them. I wouldn't choose for them to be non English speakers for example.

But anyway, I think what I'm taking from this thread is that for some it is a disability and for others it isn't and it's up to each deaf person to choose that.

LottieJenkins Sun 12-Jan-14 17:56:47

When my son was younger a family moved into our village with a daughter who was "deaf oral" and my son was "deaf signing" they couldn't communicate with each other and it broke my heart! My son then learnt total communication which means he signs, speaks, writes etc.

CHJR Sun 12-Jan-14 17:57:41

Hmm. After I posted my last I started wondering myself, whether I really meant disability or minority. It's very common to belong to a minority culture and feel quite threatened and therefore go out of your way to protect the culture, even when this brings down trouble on you from the majority culture.

To say that something is a disability is not to deny it's also a culture -- a minority culture. And as the mother of a disabled child I do feel rather strongly about who gets to define disability, the right of people to define themselves. I also wonder about the lumping-together of very different people that the mere word "disability" implies. DS2's issues are nothing like those a Deaf person would face, except (and this is a big EXCEPT that they both end up as minorities as a result. I too fret that as medicine and abortion spread, some day children like mine will be even more of a minority, but that doesn't mean I wish other children to be disabled just so my son can be a member of a larger group.

However, as so many others have said above, this isn't about language, it is about a practical, immediate medical question and the right of child versus parents. I'm glad I don't have to make that decision.

paperlantern Sun 12-Jan-14 17:57:58

of course hearing loss is a disability.

what it is being mixed up with is what it means to step outside of a community you've become a part of.

becoming a part of a special needs community can become all consuming. you have shared difficulties and experiences that those outside of don't have clue about. slowly many of your non special mum friendship drop away, they just don't understand and can't support you in the way other "special needs mums" can.

I'm speaking from the perspective of having a child whose diagnosis has recently changed. I still haven't cancelled my membership to the national support charity. but I've stopped attending the local support group.

additionally "Fixing" a disability can be an immensely divisive subject. "so you want to fix your disability. I have the same disability does that mean something is wrong with me? ". as a mum suggesting there is something wrong with the culture the mum has become a prominent part, must feel very alienating.

yes the op was unfortunate. But there is some important issues in there.

FanFuckingTastic Sun 12-Jan-14 17:58:15

My son is only partially deaf and it affects his learning at school as the classroom is a noisy place and he finds it difficult to make out what is being said. He has to attend more hospital appointments than usual, has more ear infections than usual, and has social problems that a hearing child might not. I wouldn't call him disabled, but I would think the deafness does affect his general ability if not taken into consideration.

cory Sun 12-Jan-14 17:58:30

What your friend is saying is that as a mother she has the right to decide that her child is going to spend her whole life (= long after mother is dead and gone) in this small and limited community rather than being given the choice between this community and the wider, hearing community.

It will limit her choice of careers and her opportunities to make friends outside the community.

I understand the concerns about the limitations of cochlear implants and it may be that it wouldn't be a good idea, but this whole I-am-your-parent-so-I-get-to-hold-onto-you sounds a bit cult-like to me.

It would be like me (immigrant) not allowing my children to learn English because they might not think of themselves as belonging to the same culture as me any more. Or insisting that they have to stay in my religion. Not my call to make.

CHJR Sun 12-Jan-14 18:00:15

p.s. freshcucumber I guess you're right culture and community aren't quite the same thing but I am using them in sort of the same sense here.

LottieJenkins Sun 12-Jan-14 18:00:51

OP............. maybe you should wear earplugs for the day and then see whether you think deafness is a disability??? hmm

specialsubject Sun 12-Jan-14 18:04:02

This confirms what I thought, that an implant is NOT the same as normal hearing.

what I still don't understand is why having an implant would mean that 'the child will no longer be a member of the deaf community'. Can't believe that he/she will be ostracised because she/he possibly has some hearing????

NotThemCrows Sun 12-Jan-14 18:04:56

Deafness severely limits people's access to work (interacting with the public), health services (making and engaging in appointments), information (many BSL users struggle with reading and comprehending complicated and lengthy written information -partly because of concepts imbedded in spoken/written English), using the telephone etc.

Many hotels and public buildings don't have flashing lights for fire alarms etc. Many hospitals and Drs use spoken announcements of names for appointments. A lot of admin and finance and information/helplines rely on using the telephone (banking etc) which deaf people have limited access to.

Deaf people who have no access to informal unpaid
interpreters (family and friends) are greatly disadvantaged.

Yes, Deaf culture is alive and well BUT, as noted by a PP, 90% of deaf children are born to hearing parents. Most of these will choose CI's for their children. This means that the Deaf BSL reliant community will be vastly reduced in a generations time and Deaf parents that refuse CI's for their children are choosing a much more isolated life for them, with far fewer BSL using peers than they have had themselves.

By all means be deaf/Deaf and proud but I wish these parents would realise that their children's lives will be very different to theirs.

MrsDeVere Sun 12-Jan-14 18:05:13

I am from a Deaf family and I worked in the Deaf community for years.
I understand what the OP means.
A lot of Deaf people don't wish to be defined as disabled and that is totally up to them.

It is not for them make that decision for anyone else.

The cochlear implant thing was huge when I was working in the area. Deaf people felt that they were being wiped out and feared being forced to be implanted or having their children implanted.

Deaf/deaf politics are complicated because the majority of deaf children are born to hearing parents so you have hearing parents advocating for their deaf children and what they think is best is sometimes at odds with what Deaf adults believe to be best.

It is difficult for people to understand Deafness as anything other than a disability if they have no experience of the culture, history and complex language.

It is also important to remember that even if someone doesn't feel that they are disabled they are forced to accept the label if they want to access help.

JaponicaTroggs Sun 12-Jan-14 18:06:37

I recently watched a great documentary film, Sound and Fury which is about an American deaf family facing the dilemma of letting their daughter have cochlear implants and the divide it creates with other deaf family members. It was made a few years ago but well worth watching.
youtu.be/0ki4qo-Dfos

CakePunch Sun 12-Jan-14 18:08:36

Wearing earplugs for a day is nothing like being deaf. A profoundly deaf (from birth) persons brain is structured differently - that's why if you have no hearing at all giving you a cochlear implant as an adult won't give much benefit. Deaf people have better visual perception and peripheral vision. Plus they have spent their whole life creating strategies for coping in a hearing world. It's a bit of a silly argument and isn't fair on the op.

LottieJenkins Sun 12-Jan-14 18:10:17

Maybe CakePunch but they would realise what it is like having to be careful crossing roads etc . Glad to see you posting MrsDeVere!!!

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