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?

OP, massively insensitive, poorly worded and ignorant on so many levels. Your post is inflammatory.

I'm very sorry frogger As I said upthread, I spent a lot of time on the post trying to make sure it was sensitive, correctly worded and absolutely not goady so I feel really bad that it has still come across like that.

However, as I have also said in a previous post, I have already accepted that IABU and that for some deaf people it is a disability and for others it isn't. It is up to them to decide.

I definitely don't agree with those saying the ex husband has more of an idea as to what the best course of action is. I don't know who is right, it's so hard.

The child should have the opportunity to hear, adapt to mainstream society and live any life he wants, if he grows up and chooses to be deaf full time and live in 'deaf culture' then that's his choice. His mother has no right to deprive him of one of his senses to make herself feel better. Imagine a wheelchair user demanding their child not get medical treatment to help them walk so that they can be part of the parents 'community'. Ridiculous and abusive.

But the problem with allowing deaf people to decide whether or not they consider they have a disability is when they impose that decision on their children, or even go out of their way to have children who are deaf.

My god daughter got meningitis at 2 and has CI. She functions in the hearing world amazingly well. Her mother worked extremely hard to make that happen. If her daughter decides that the hearing world is not for her when she is older and she wants to join the deaf community, she has that choice.

i get very uneasy at people who want to impose their choices on others, particularly when those others are children who have no choices other than those their parents secure for them.

Pumpkin - the 50,000 estimate or whatever the true number, was in reference to the Deaf cultural group in the UK, the one it's worth denying your child's future for. Of course deaf people can now communicate with many more. But they won't find that instant warmth etc on which many of the cultural points are made when talking about the Deaf community.

penguindreams I am the same as you and totally relate to what you said.
Yes it is a disability. I can completely admire your friend being positive about it. I think if I heard 100 % now my head would explode as there are so many sounds I've not heard for a long time. I Also understand how surrounding herself with people the same makes her feel and not like an outcast. It is a works where people all feel the same and can communicate with each other like everyone else is able to in the hearing world.
I'm not sure about her child though and how her and her partner not agreeing. It is a big op and may not always work. Maybe its something she wants to wait for and allow her child to make her own decision? I watched a film about this bit long ago and it was sad as the parents disagreed about it. One parent hearing and one deaf. In one way your friend is trying to let her child live with this disability and allow her to be accepted but then not having the option to hear. Maybe she's worried about the procedure etc. Maybe the child can choose this I be done when they are older. It's a hard decision.

Pumpkin - the 50,000 estimate or whatever the true number, was in reference to the Deaf cultural group in the UK, the one it's worth denying your child's future for.

Yes, I know what it was in reference to, and I'm saying the estimate is very low. I also disagree that rejecting CIs for one's child, for whatever reason, amounts to 'denying your child's future'.

Pumpkin - If not denying than seriously and needlessly limiting your child's future to make a point. Cruel and misguided.

It may not be denying your child's future - there are many futures a child can have, be she deaf or hearing.

But it is certainly limiting her options, in a way that she has no say over.

And I think parents need to think long and hard about this.

I cannot even read any replies I am so fucking angry. I have one ear, my daughter has one ear we both are deaf in one ear and it is debilitating, embarrassing, difficult and disabling. How dare you!

Ok I should have rtft. but I didn't - I just couldn't believe the title.

This is quite a fascinating thread. I am profoundly deaf and have been so since birth and I do not consider myself disabled as I have the usual trappings of modern life, but I do believe that I am DIS-abled by a society that requires that I use the telephone, intercoms, tannoys, etc where necessary.

Fortunately modern technology means that I can find ways around it such as using FaceTime to contact family and I rely heavily on email at work. Indeed technology means that I am two months in to my cochlear implant rehabilitation (slow going, but I think it is working!)

What my deafness means to me is that I find group conversations difficult and social situations are fraught for me due to the effort of making sure I don't come across as aloof or a fool!

Anyway, getting a CI is a very personal choice and there are many factors to consider, not least the society that you move in. That said, more deaf adults are getting implanted so it is not longer the taboo that it once was although some still feel strongly about it.

MrsDeVere - perhaps you'll retreads post to you. Polite and non-hostile. Then read your post about how people should educate themselves about drag history. I was replying to that. I have educated myself and I don't want my child to pay for making amends for wrongs they had no part in. I want them to be fully part in the present with all its opportunities.

Oh, and unfortunately, due to where we live BAHA's are not funded for SSD so we do have to suffer the disability (for this is what is has been proven to be) of SSD. CI is not an option for either of us as our cochlears are fine, we need bone conduction.

I'm amazed at the ignorance on this thread. Are there really people who have no idea of the existence of a culturally distinct deaf community, many of whom have strong ideas about deafness as a positive attribute rather than as a disability? I honestly thought that would be common knowledge. Of course you aren't being offensive OP and the people who say otherwise are the clueless ones, who might do well to read up on this decades-old debate both within and outside the deaf community.

I speak as a disabled person, who has only recently - aged over 40 years - made peace with that.

I think deliberately trying to create a child who is disabled - as I understand some American deaf couples have done - is wrong.

Life is hard and difficult as it is without depriving a child of one of the main senses.

Loving and accepting a child who is born disabled is an entirely different thing.

There we go. How about thinking about modern times and the future? Obviously there hasn't been such a huge impact if we are all so clueless. Shall we move with the times?

I vaguely recall reading about some American couples who said they wanted a deaf child - all adults involved were deaf. I have no idea about the science behind this, whether it is possible or not. I assume if you can identify a gene mutation that caused deafness you could screen your baby for it and abort the hearing ones?

I have no idea.

But the fact that they WANTED to do it, is what I have really serious problems understanding and sympathising with.

This is what I read. For some reason I can't copy the link but if you google 'deaf couple want deaf child' this should be second or third result. From journal of medical ethics.

A deaf lesbian couple who chose to have a deaf child receive a lot of criticism

A deaf lesbian couple in the US deliberately tried to create a deaf child. Sharon Duchesneau and Candy McCullough hoped their child, conceived with the help of a sperm donor, would be deaf like the rest of the family. Their daughter, five year old Jehanne, is also deaf and was conceived with the same donor. News of the couple choosing to have a deaf child has only been revealed with the birth of their son Gauvin.1–4

I have a friend with a CI, she very much feels "between two worlds" - not completely deaf and not properly hearing. It is a state she really struggles with, I think if she had known this before, she'd never have had the CI.

She had perfect hearing until she was 42, when as a side effect of powerful and lifesaving antibiotics (after a burst appendix) she went deaf on both ears within 6 months.

The CI operation was really really hard on her, her brain struggled for months to decode the noise the CI was transmitting.
She had issues with the technology, the computer-based "translation" of everyday noises. After 9 months several electrodes (whatever they are called) failed and she lost a lot of the hard earned hearing.

She lost her job, her music, everything changed for the family.
It is not a disability? If I was to say that to her she would never talk to me again.

I think it is a very difficult decision to take for your child, whether to have a CI or not.
My sister has a friend with a deaf son, deaf from birth. He is in a mainstream school because where he lives there is no special school. Every day is a struggle for him, he is very clever but has no chance to be even at an average level at school, because there is so little help.
The mum is in London (GOSH) frequently to find out if there is anything they can do for him, as he gets more and more frustrated as he gets older, because he realises he is different and has no chance to keep up with his class mates.

MrsD I had no idea of the level of persecution deaf people have faced. I remember being surprised recently that BSL was acknowledged only recently. Will do a bit of reading.

Spero, from what I have read about that particular case the parents in question don't view their deafness in a negative light at all, quite the opposite, and wanted all the members of their family to be the same - Deaf. I'm not saying it is right or wrong but it seems their experience of life has been positive. I think what they did was choose a sperm donor who, like the mother, could only genetically ever have a deaf child and in cases like that it becomes a question of whether it is right to tell a person they shouldn't have children because of the genes they will pass on.

I've also read that the "Human Fertilisation and Embryology Bill" ruled out the option to choose an embryo because it had a gene likely to make it deaf. Presumably enough people had considered it to make it necessary.