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?

CIs are some of the most expensive ops, with strict referral criteria on the NHS. I think somebody's already done the work you're looking for, JimJams. To a large extent you get what you put in. So you would need to work with the child. Both as family but also SLT and teacher of the deaf and school and everyone involved. Then, thankfully, there's the richness of the incidental learning that happens. All those noises and speech you hear around you: TV, shops, everywhere you are surrounded by sound.

Can you link to the work though, because I cannot find it.

I can find work saying that it's very hard to predict who will have a successful CI and who won't be successful.

I have found research saying there is a better success rate for those using a strict oral only approach as opposed to a total communication approach.

I have found papers saying that for those children who do not have success with an oral only approach end up potentially buggered because they start learning BSL too late to become fluent. They end up with no first language at all & all the problems that go with having no fluent language (believe me that is a massive problem compared to having no oral language).

I also found a paper saying that work at home had more effect than work at school.

I have found nothing comparing the success rate of children whose home environment was ASL/BSL with those from a hearing home. I couldn't find any data on them at all. All the data I could find was on children with CI living in hearing homes. That's not the same group.

Having had years of experience of accessing the SLT service, there is no way it could replace a switched on hearing parent. The NHS model for SLT is consultative now - it is rare to get any hands on SALT at all. Private SALT was £50 an hour 10 years ago.

I did find this open access paper that addressed some of the questions but I couldn't find any data for children with CI's being raised in a signing environment. www.harmreductionjournal.com/content/9/1/16

I think some might be judging other people's choices prematurely.

So that's all you could find. Nothing positive at all. Only success is difficult to predict. Astonishing!

I don't understand why you're hell bent on finding comparisons between success in BSL environment children and children from hearing families. I don't have research to hand because it didn't apply to me on the three occasions I had to make a decision about CIs over 13 years. I didn't look into it. I did look at the long list of risks. I also met dozens and dozens of children with CIs and their families. Have a look at NICE, write to one of the CI centres. Then what are you going to do with the research? You seem to have decided anyway.

Have a look on UCL website, research report 19 Dec 2013, sign language use good for CI outcomes. I haven't read the report.

here

I haven't decided I'm not making a decision. Why do you think I'm critical of implants - I'm not - I'm critical of an automatic assumption that choosing against implants is 'wrong'.

I am saying that the people being criticised on this thread (i.e. some parents of children from Deaf families) are quite possibly being criticised unfairly. That's all. I'm asking those criticising them to imagine themselves in that position having to make a decision - with as far as I can see no research into the likelihood of success for a child like theirs because the data has come from elsewhere- and I am asking those people doing the criticising to point me in the direction of that research if it exits.

I'm not criticising anyones decision. As I have said repeatedly it should be individual. I'm criticising the judgment of some of the Deaf community from the hearing world.

Anyway I have now found a blog written by someone who grew up with implants, is enthusiastic about them and where she lists what she thinks made her implants successful. She put a lot of her success down to daily therapy session with her mother and what I would call natural environment teaching (and tbh I'm not surprised - it ties in with what i have seen - natural environment teaching is by far the most successful method we use with ds1). If she's right then a child growing up in a signed environment is going to be missing out on a whole load of the factors she assigns as having led to her success (1:1 work with her mother).

Yes I saw that last night and thought it interesting. Although I no longer have athens access so can only read the abstract it seems to agree with the open access paper I linked to.

But it still doesn't answer my question - which is how important is living in an oral environment important to CI success? How important is it having an oral communication partner in your own home. That would be the key question for me if I were (the heavily criticised) mother in the OP. If the answer was 'not very' then that might lead me to make one decision, if the answer was 'absolutely critical' then it would almost certainly lead me to make another. But as far as I can see there isn't anything that would answer that question for her.

No child lives in a bubble, or they shouldn't. Of course using the CIs, being encouraged to use them, being expected to use them, being surrounded by sound and speech and an interested adult would make a difference. You don't need research to prove that.

Dizzy :) WTF to do indeed ha ha. My mum had the same problems and even when she would tell her to take notice of sign sis would close her eyes and still not pay attention :)

There's 4 of us siblings and we hearing 3 would look on with envy that she could check out of a bollocking from dp's. I remember another sis once trying to hold her eyes open saying 'if I'm being told off then so are you' :)

But a child in a BSL/ASL home isn't surrounded by speech. That's what I'm saying. For a 6 week summer chunk of each year a child in a signed environment may have very limited access to any speech directed at them. And when you are language learning the way speech is presented is key because attention is key to learning speech & aural/oral language. Or we could all turn on a different TV in a different language in each room and produce multilingual children.

If I was the mother in the OP I would want information on success rates when I personally couldn't provide typical oral input to the child. It would be a key question for me and my decision may well depend on that answer (all other things being equal).

The child in the OP had a hearing parent as well. We don't know what the time spent at home by each parent was. A 6-week speech free period would imply extreme isolation to me and I'd find it disturbing, if that's the right word, if a child would be in such a small community with no access to the wider, hearing world. I think this argument could go on and on. Do you think allowing CI access to BSL users is another sign of the historical hearing world oppression of the deaf? I see it as progress and I'd wish every child had the opportunity to hear.

The OP said elsewhere the hearing parent wasn't around that much. I know from living with a hard to understand child that I understand him the most, followed by ds2, then my mother, then ds3 then dh. DH lives in the same house (so not the separation described by the OP) but isn't in enough contact with ds1 to understand what he says. He understands one word (mummy- because it is said clearly - everything else he says I have to translate - and dh is pretty hands on). I'm not saying speech-free as in they're sat in the house not going anywhere - I said speech directed at them. What perhaps I should have said was speech with focussed joint attention because that is absolutely essential when learning language (any language delivered through any modality - it's why Deaf BSL users are better at teaching BSL to their children than hearing parents who have learned BSL - those fluent in BSL are better at establishing joint attention when using sign).

I don't think giving an implant to a BSL user is oppressing the Deaf. Far from it. I am not anti-CI - presenting the cons for a particular case doesn't make me anti CI. I am not criticising anyone's decision. In fact I am doing the opposite and standing up for the mother in OP and saying there are lots of reasons that she might have made that decision and in her shoes I might well have made the same one.

If we stick to the OP we know the child is
(1) 9 years old
(2) fluent in BSL
(3) living with a parent with BSL as a first language who s heavily involved with the Deaf community so presumably doing most of her socialising there.

Her chances of gaining fluent speech with a CI have to be pretty low surely? And the criticisms levelled against her 'why wouldn't you want to cure your child's disability?' show an ignorance of what the CI would be likely to achieve. I disagree with the mother saying that the CI would take her child out of the Deaf community, but I agree with her that (given the 3 points above) that she would easily integrate into being viewed/treated as a hearing child. And therefore the cons of the implant are potentially more important than if she were younger, living with an oral parent and had non-fluent BSL. I would be at the mother if she refused to allow her daughter access to hearing aids and people working with her on using aids at school (assuming appropriate in her case of course) - but for refusing invasive surgery that maybe doesn't have a great deal of chance of high success in her particular case ? From the little I know about the case it seems a reasonable decision - just as reasonable as the decision to give it a go and have the implants would be anyway.

*woudn't

oh ffs wouldn't

The OP says the concerns are around the child not being part of the Deaf community. Nothing about CI outcomes, whether she'd support it, whether she's looked into the pros and cons, whether they could afford additional SLT.

Comparing CI outcomes amongst groups if children will be difficult because there are so many variables: how young when implanted, social background, other issues present etc etc. I go back to saying that the NHS referral criteria are quite strict and I don't think we'd resolve the issue of suitability on here. Although the OP says the issue had been discussed repeatedly so one can assume there was an opportunity at some stage. The main point made, however, was whether deafness even is a disability and whether cultural identity is more important in cases like this. Sounds like a resounding 'yes' and 'no', respectively.

A few months ago I had a horrible ear infection which left me totally deaf in one ear. The two days my hearing was affected was so horrible that I have nothing but sympathy for those with hearing loss.

Even something as simple as inputting my PIN in the supermarket was hard work because I couldn't hear the machine beeping properly. To think of having to spend the rest of my life like that, or worse totally deaf to me is horrifying.

In terms of disability I do think it's up to the individual to decide whether they are disabled. Ds1 is severely disabled imo. There are plenty of people with the same diagnosis as his who view themselves as not disabled. I'm not going to argue with them about that. In this case the mother spends the vast majority of her time in the Deaf community - so presumably isn't disabled in everyday interaction. It's a textbook example of the social disability model (a model I have lots of problems with when applied to widely - but it fits here).

I do think the cultural identity issue is more complicated because it seems there is a view that learning BSL to an L1 level and learning speech with CI is not necessarily complementary. There does seem to be an idea (which as far as I can tell from reading is still current if I'm wrong please link to more up to date commentary) that with a CI you have to choose either to aim for fluency in speech or for fluency in BSL. Then you can add the other as a second language. That becomes a potential issue when fluency in one or the other is not guaranteed & becomes a cultural issue as well because it places a value on sign, and also potentially prohibits it.

I would have thought it would be sensible to

1. carry out more research to identify the factors that predict a successful outcome for a CI so that you can identify the group most likely to achieve good outcomes prior to the decision being made
2. look at ways to support sign language learning with a CI - particularly for those who may be less likely to achieve good results with a CI - that way they could go for the CI without worrying about losing the opportunity to achieve a first language via sign.

Tricky decisions all round - but particularly for Deaf parents with deaf children because the pros and cons are harder to quantify.

L1 = first language not level 1

I have quite a significant degree of hearing loss, but am not completely deaf. My perspective on this is therefore a bit different from that of someone who cannot hear anything, in that I do not speak sign language or have the culture of deafness around me. However, I can imagine that they are very enriching things, and I can see why people would find them very positive.

I do not identify as disabled when there are tick-box questionnaires. I am able to live a relatively normal life thanks to having some amazing friends who always save me the 'right' seat in the pub, who never walk on my right hand side where I can't hear them, and who try to find non-noisy places to meet. They know that I can't tell what direction sounds are coming from, so they never call my name and expect me to know where they are. I am grateful to have such lovely people in my life.

However, there are other times when I really wish I could hear properly. When I am listening to headphones, I often miss half the song if it has been recorded in stereo. In my city at the moment there is a sound installation. An engineer has recorded the sounds of the city using a method so that the direction of the sound is captured. Like everything else, it's just a wall of noise to me. And surround sound systems in the cinema are lost on me too. I love music and I often wish I could hear live music concerts better. To strangers, I often have to identify as disabled because I inadvertently come across as rude. I simply don't hear someone talking to me, and they think I am ignoring them and naturally feel hurt and offended. The first I know about this is when they act all huffy, and then I have to apologise, and explain - and it is that explanation in which I suddenly realise that I am a little bit different! I always find these situations very awkward, because the person will often feel really bad that I am having to explain, even though they had absolutely no way of knowing that I was deaf, so it often ends up with me trying to make them feel better!

I don't see why this has to be an either/or situation. I think we all deal with multiple identities in our life. Part of the exquisite complexity of modern life is having many hats - we are women, we are mothers, we are wives, we are workers, we are members of a certain race or sexuality, we choose to be members of faiths, creeds, tribes. We can juggle all of these things - and our multiple identities make our lives more, not less meaningful. I do not see why a little girl cannot BOTH be able to hear AND identify as part of the rich and amazing deaf community.

Just to finish up I found this article - the comments are well worth reading as well - full range of opinion expressed there - plenty to mull over.

www.theguardian.com/commentisfree/2011/aug/05/deaf-people-cochlear-implants

Sorry if this point has already been made, but deafness is seen as a disability in a society that is heavily weighted towards hearing and oralism. The history of Martha's Vineyard is a good example of deaf and hearing people being well integrated through the use of sign language for both deaf and hearing people.

www.google.co.uk/search?q=martha%27s+vineyard&rlz=1C1CHFX_enGB522GB522&oq=martha%27s+vi&aqs=chrome.1.69i57j0l5.4906j0j7&sourceid=chrome&espv=210&es_sm=122&ie=UTF-8#q=martha's+vineyard+deaf+history

If BSL was widely taught in schools then the view of deafness as a disability would soon be history.

Oh wow. Did you mean to be so rude and offensive ? Or does it just come naturally. It's not your place to decide if someone is disabled or not. I am deaf. Only 10 % hearing in one ear. I don't define myself as disabled. However my brother who is the same does. It's down to the individual. Being deaf can be debilitating. As for deaf gain. That's for us to decide if we gain or not. Not you. You need to educate yourself in the ways of others. And how not to offend people.

Cravey I'm not sure if that comment is meant for me or not?

Problem chimp no. It wasn't. That article was extremely interesting. It was meant for the op. Who needs to broaden her horizons.

It's a disability because mainstream society is constructed around the ability to hear being the norm.

If BSL and lip-reading were part of the national curriculum and all telephony equipment came with amplifier / TDD technology as standard, it wouldn't be viewed as a disability.