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?

The more I think about it, the more I realise 'deaf gain' is one of the most idiotic things I've heard of in a long time.

I have a deaf child, she has two cochlear implants, i see the difference between her and her hearing siblings, it's a disability.

Pumpkin - you say that in the worst case scenario in the hospital you provide pen and paper and write it down. Ironically that in your next paragraph you give the example of a deaf woman whose appendix was removed without adequate consent. I've read the reports now. She was a BSL user with very limited lip reading and whose understanding of written English was very limited too. If that's not limiting I don't know what is. So much for how bring deaf is no barrier to anything in life.

She is a a fairly extreme example - but her limitations were not due to the lack of CI (I have no idea whether she would have been a suitable candidate). She was limited due to 1) poor education. BSL users can be taught to read and write well but so many of them have been hindered by inadequate education and 2) she was legally entitled to a BSL interpreter and she knew her rights. Hospital rode roughshod over her. Had she been provided with communication support, she would have been able to give (or withhold) consent for the op.

I think that many deaf people don't have the same positive experiences as the OP's example and that for them, deafness is a disability.

My dad is deaf and finds it a real disability at work and in social situations. He doesn't know any other deaf people.

Same with a colleague, she can't answer the phone or hear people from behind her - luckily she can lipread very well.

Lots of deaf people can't lipread and have become deaf through age which makes life harder - for example my nan is now very deaf and her manual dexterity is too poor to wear hearing aids. She suffers when we're together as a family because despite our best efforts she can't hear our conversation and misses out A LOT.
It's a real shame.

When combined with poor eyesight (again, as in lots of older people) deafness is even more of a disability - you can't even write things down for them to read easily.

I see a lot of people who I would describe as definitely disabled by their deafness in the course of my work.

YABU. Hearing impairment has blighted my sibling's life and affected all aspects of it.

And your friend is being terribly selfish.

Maybe it is insecurity. But how could one be so selfish??

It strikes me that a lot of different situations are being described as 'deaf'.

Losing hearing is different from being born without hearing.
Partial hearing loss is different from profound deafness.
Being born in a family using fluent BSL is different from being born in a family where no-one has any knowledge of BSL.

These individual factors will all affect a person's experience of deafness and how they feel about being deaf and indeed what they want to do about it.

LCHammer - I'm not sure that it's very easy to learn BSL at the same time as speech - you sort of have to learn both separately, even if you are doing so at the same time surely, because of the word order issue. You could learn some signs combined with speech - (although I have seen some people saying it shouldn't be done because it messes up where people have to look to learn spoken words rather than sign?? -although I would imagine this would be individual and depend on the level of hearing loss). I found frusso's comments about the difficulty of learning BSL if you aren't fluent in BSL yourself interesting. The converse of that of course is to ask how effective a cochlear implant is if you are only using BSL at home. I know in ds1's case most of his language learning has come from us, not from therapists or school. I get the impression that learning to speak via CI isn't always as simple as turning it on then leaving the child to get on with it.

Learning to listen and speak via CI requires commitment. Lots of hospital appointments initially for fine tuning. Pointing out sounds and where they came from, SLT etc. Much easier the younger the child is.

I can see how CIs would be deemed 'not suitable' or 'not working' if a child was in a BSL environment, allowed to forget to put the CIs on, not having them maintained, not attending hospital appointments etc. You need to support the child and this would be difficult if you don't want to.

As for learning two languages at the same time. Lots of bilingual children manage it, maybe a bit later but no major impediment. The oral/verbal divide is becoming a thing if the past, ideologically.

Pumpkin - in the example you give, you say the woman was a pretty extreme example. I should like to think so. I don't know what other group of people nowadays would be unable to read and write (obviously, no major LD). You'd call that a major disadvantage. Middle Ages almost.

Although Manchester Children's hospital describes auditory-verbal therapy as a therapy that is particularly suitable to children and infants who have had cochlear implants with primary caregivers trained to be the primary therapist for the child. And the Auditory-Visual website says if learning spoken language through listening is your goal learning BSL should be delayed until language listening skills are established www.avuk.org/families/questions-answered/like-child-learn-british-sign-language-bsl/ So whether it's right or not (and it does at first glance seem to contradict other research I have seen) delaying BSL is still being advised in this day and age.

It might not be much of an issue for a deaf child in a hearing family, but it's quite possibly going to be a majorly issue for a deaf child in a Deaf family surely (and these are the people usually called selfish)? Delaying learning BSL could presumably affect the ease of achieving fluency in it as well???

I'm not saying that means it's wrong to have a CI - but it makes the decision a whole lot more complicated than many people realise. And brings us back to individual circumstances being different and different families therefore choosing different routes (with neither option being definitively right or wrong)

My deaf client was criticised very heavily by the judge for not writing to her daughter in care. The interpreter had to step in and explain that many deaf people do not write. I didn't know that, if true that is clearly a potential limitation.

I think some research shows that if you are profoundly deaf being better at sign increases your chances of reading well. Probably coming back to Frusso's point of needing a language you can think in. Think it's an area that needs more research though.

"they're not choosing to have a deaf child, they're choosing to have a baby." no. If a couple have a genetic condition which may or may not be passed on to their children and they conceive naturally knowing that the child may inherit that condition then they are choosing to have a baby, which may or may not be deaf. If, however, they have IVF treatment, during which the embrios are screened for that genetic condition, and only the ones with the condition are put back and the rest discarded (which is what happened in the US) then they are choosing to have a deaf child. There is a big difference.

And what happens when that child is older and they want to know why their parent chose that for them? What then? Esp if a parent goes through treatment to have a deaf (or any other type of disability for that matter) child, will there be pressure on them to do the same as they grow up? I'd imagine there would.

I am currently going through something related to this with ds actually, where he is suddenly very aware of the amount of visual impairment around him and in esp his dad's family (as no-one else in my family is VI) and has started asking questions such as whether his children will be VI, or whether he will lose his sight, or if he will end up with vi siblings if his dad has more children.

And everyone is differently accepting of a disability - just because an adult accepts that they are disabled doesn't mean their children will be. Sil definitely isn't, and hasn't integrated into the VI community at all which is fair enough because she has a decent level of vision. But her lack of acceptance has extended to e.g. not wanting PIL' guide dogs in her house, meaning that when ILs visit her they have to stay in a hotel.

But I don't think that there are people who wish they were disabled rather than being able-bodied... those who would choose not to be disabled have generally accepted their disability rather than thinking that they wouldn’t want to not be disabled iyswim. E.g. I wouldn’t choose to have my sight if I were offered it now, but obviously I wouldn’t have chosen to be blind when I was born, although in retrospect perhaps having the disability I have had made me a different person with different people in my life and different life experiences etc. But there is still a difference.

I do think that life-limiting is the wrong term, but there are limitations attached to many disabilities, most o which are admittedly applied by society. It would be naïve to suggest that there aren't. e.g. I can't walk into a restaurant and browse their menu because it's in print. and not all restaurants provide a braille menu so I am reliant on someone else to read it for me, something which can never be guaranteed.

If you cannot communicate in the same way as others then this is limiting for you and is why tbh so many of the deaf community stick together – because integrating into the hearing world is so limiting.

Incidentally, I went to school with a lad who was vi and his parents were both profoundly deaf. Now that was interesting...

YABU but more importantly the mother (your friend) is BVVVVU. Why would any loving parent deny their child the option of some hearing? It doesn't mean that the child can't participate fully in the deaf community but it gives him or her the chance to participate fully in the hearing world too.

I find this completely baffling.

'deaf gain' - WTF?!

That's like me (atrocious eyesight) bragging that I have 'blur gain' when I stumble about with no specs on. Yes the world is a series of pretty bands of colours - but it's a dangerous place to be frankly.

I have heard this argument before. I think if 'deafness' can be fixed/cured then it should be. I couldn't think why any parent deaf or hearing would think it was a good thing for their child to remain deaf.

MN at its best - if a man and woman disagree, the man is a bullying arse, and Mum always knows best.

No, not at all.

When a parent has been happy with something for the first 9 years why do they suddenly change their mind after a split?

It doesn't matter if it is choice of school, clothing, languages used, tattoos, piercings, medical treatment.

When a parent leaves and suddenly something that they have been happy with for their child suddenly changes then IMHO and also in my experiences of friends it is often about getting one over on the other parent.

You could learn some signs combined with speech - (although I have seen some people saying it shouldn't be done because it messes up where people have to look to learn spoken words rather than sign??

I think that's more to do with the signs in BSL not being in the same order as English.

Something simple like saying you have put a glass of water on the table, if you used BSL and voiced words at the same time would come out something like, "table glass put there what water" - so nonesense.

DS2 is moderately deaf and I do consider it very much a disability for him. He is brilliant with makaton and as a family we are learning BSL as unfortunately for DS he also had a late diagnosis of a cleft palate which made speech near impossible for him. BSL is hard!

I'm going to be very cheeky here as there are clearly parents on this thread with vast experiences with hearing loss and ask if they could have a glance at my thread here www.mumsnet.com/Talk/childrens_health/1965874-Sudden-deterioration-in-hearing-in-already-partially-deaf-child as we are quite worried about him.

Thank you :).

Timetopassgo I don't think those two things are remotely the same, sorry. I personal don't understand Deaf culture or the benefits because I have not experienced it. But I know to many people it is a very real, precious and beneficial thing and they genuinely think their lives are enriched by being deaf - they have certainly gained rather than lost. Just because I don't understand that I think it would ignorant (I know I've already been accused of ignorance for my own understanding and it isn't something I like to call people really but I do think it applies here) to say that those who feel it are wrong.

People were asking why it wasn't considered earlier. It was. It's been considered more than once and turned down more than once. It's a recurring and very divisive argument. The father has very little contact/input into the child's life because of the division. Horrible situation all round.

sashh Is that the case? That the DCs Dad had accepted/agreed with Mums position not to seek medical intervention in the DCs earlier years?
Or, perhaps it was a cause of tension that led to the split?

And do you know that he left the marriage? Given the picture painted in the OP, it wouldn't surprise me if the deaf mum left her DH because he isn't deaf!

X-posted; thanks OP!

YABU. To not have one of the five senses is definitely a disability. It is fantastic that your friend does not feel excluded from 'normal' life, but I do feel she is one of the lucky ones.

Yes, I do see that Xmasbaby

I think the most useful thing from this thread for me is the distinction between Deaf (which is the experience of the only 2 Deaf people I know and is a language and culture not necessarily a disability) and deaf which is the often debilitating disability described by many on here.

I can totally understand what she means by "deaf gain".

I was thinking about it the other night when DH was asleep and snoring. I thought, it's bloody brilliant that I don't have to listen to it!

I don't feel like that all the time though. When my HAs break or something goes wrong with them it's very frustrating and I'm thankful that I have them. I would hate to be as deaf as I am without them all the time (if that makes sense).

If I have a headache I take my hearing aids out and it's silent and it's heaven so I totally understand what she means. But I couldn't imagine living in a silent world all the time.