You may have read the story a few weeks ago about the EastEnders actress, Rita Simons, who wants her deaf six-year-old daughter, Maiya, to hear better by having an operation to get a cochlear implant. But Simons, who plays Roxy Mitchell, says she was told she would be “abusing” the child if she went through with it.
Why would anyone think that giving your child a cochlear implant would count as abuse?
You might also be wondering what exactly a cochlear implant is. It is essentially a special kind of hearing aid that is surgically inserted deep inside the inner ear. It stimulates the parts of the hearing ‘nerve’ that a conventional hearing aid can’t, enabling many profoundly and totally deaf people the opportunity to experience sound.
The operation to insert them into your inner ear is quite a serious one (it involves drilling into bits of skull bone, for instance), but is now considered a fairly routine procedure and not particularly risky. I know all this because I have a cochlear implant.
In fact, cochlear implants have been around for years and are now very common.
Over 200,000 deaf people worldwide have them, making it one of the most widely used prosthetics, after hip replacements or heart pacemakers. In Ireland, nearly 500 adults and children have gotten implants from Beaumont Hospital, which has run the national cochlear implant programme since 1995.
But a cochlear implant is not a ‘miracle’ cure for deafness. It doesn’t restore hearing; it replaces it with an almost completely artificial system that is nowhere near as good as normal hearing. And because it is a totally new way of hearing, it can take quite a long time to get used to it.
But once you adjust to it, it can give you very serviceable, useful hearing. However, it doesn’t work for everyone, while others may only get limited benefit.
It now works really well for me and the chances are it could work well for Maiya, too, but her mother knows full well that it won’t give her perfect hearing.
Nonetheless, she says she encountered “extraordinary” hostility from “people who firmly believe that deafness should be embraced rather than treated as a physical deficiency that should be corrected”. “I respect their point of view,” Simons told Hello! magazine. “But when a 19-year-old girl told me that I was an ‘abuser’ to let my child have a cochlear implant, I was horrified and deeply hurt.”
But why would anyone “embrace” their deafness? I didn’t grow up in the deaf world, but I’ve met and gotten to know many signing deaf people. And what I understand now is that not every deaf person wants to be ‘fixed’. In fact, some people are very happy to be deaf.
Leaving aside the fact that implants don’t do much for anyone who has been deaf for all or most of their lives, choosing not to get one doesn’t condemn them to deafness in terms of communication because they have sign language.
So proud are they of sign language, members of a deaf community typically consider themselves not as a group of people with disabilities, but as a distinct cultural group with its own language.
Irish Sign Language, like British Sign Language, French Sign Language and American Sign Language (yes, they’re all different), are fully fledged languages with just as much complexity and sophistication as spoken languages.
But years ago, when cochlear implants starting getting popular, the media over-hyped them as hearing ‘cures’ when they were anything but.
The hype fed a genuine fear among deaf people that cochlear implants would effectively kill off their deaf communities and wipe out sign languages. This deep-seated fear has lead to the kind of hostility that Simons was recently exposed to.
The truth is, some of their fears are being realised — albeit slowly.
Thanks partly to cochlear implants and better hearing aids, the numbers going to deaf schools have fallen sharply, leading to a weaker and less vibrant deaf community.
But deaf communities are adapting and cochlear implants are now much more widely accepted among the ‘culturally’ deaf — because they realise it is not a hearing ‘cure’.
I know a few deaf people who got them recently — one who wanted to be more independent at work and the other so that she could hear and enjoy music more.
But they still use Irish Sign Language and they still consider themselves deaf.
But what deaf communities (including Ireland’s) would really like now is for parents of deaf children to meet with them and see that their child could benefit not just from cochlear-implant and hearing-aid technology, but also from learning sign language and being part of a strong and friendly community.
They are not mutually exclusive choices; a deaf child can grow up to have the best of both worlds.
That bigoted 19-year-old who labelled Simons an abuser probably wanted to deny her child the benefit of those choices, but there are always extreme elements in any community.
This article first appeared in Ireland’s Evening Herald
John Cradden is a freelance journalist based in Co Kildare, Ireland, and writes for a variety of Irish publications, including the Irish Times, Irish Independent, Sunday Times (Ireland), Sunday Business Post, as well as stuff for various other publications and websites, including a bit of sub-editing. Currently working on a (most-likely) self-published book about getting a cochlear implant and other musings on deafness. As someone brought up in hearing family and mainstream schools, used to be indecisive about his deaf identity, but now he’s not so sure.
Personal website: http://www.johncradden.ie
Twitter @johncradden
Lana Senchal
December 20, 2012
I always tell people who object to CI – if their kid is blind and would they object to eye operation to see the beauty of our world?
Robert Adam
December 20, 2012
Not so balanced: why is the 19 year old called a bigot? This article deals with some of the concerns Deaf people have about the implant but in the end still calls the 19 year old person a bigot.
Editor
December 20, 2012
The Cambridge Dictionary definition of a bigot is: ‘a person who has strong, unreasonable beliefs and who thinks that anyone who does not have the same beliefs is wrong.’
I don’t think it’s unfair to say that calling Rita Simons an ‘abuser’ for possibly giving her daughter a cochlear implant matches the definition given above.
Of course, not everyone agrees with CIs, and people are entitled to their opinion, but it was an extreme reaction that probably alienated Rita Simons further from the Deaf community – which is the biggest shame of all.
rejadam
December 20, 2012
And some of the things medical professionals have said and the claims they have made about the cochlear implant and Deaf people do not amount to bigotry?
I think it is a perfectly understandable response to the onslaught of misguided public sentiment and poorly informed commentary about what it means to be Deaf.
No one really ever talks about (especially in the genetics debate as well) why it is OK to be Deaf and a member of the sign language community.
I’m sure there are people out there who think sign language for Deaf children is like child abuse (and I have even seen a headline in Australia saying as much). So I don’t think calling this person a ‘bigot’ was very helpful – it would have been better to discuss the big picture and the different views, and where they come from.
Editor
December 20, 2012
I agree that we need to make the point that it “is OK to be Deaf and a member of the sign language community”, and I completely agree that many people don’t have the first clue about what being deaf means. And that doesn’t help. However, that argument is not going to get anywhere if people who elect to have a CI or give one to their child are then labelled an “abuser.” It leads, as it has done here, to newspaper headlines that reflect badly on the Deaf community.
John David Walker
December 20, 2012
This is a very middle of the road article that doesn’t really explore the deeper issues. There are some flaws:
“But deaf communities are adapting and cochlear implants are now much more widely accepted among the ‘culturally’ deaf — because they realise it is not a hearing ‘cure’.”
I am not sure about the relationship between ‘culturally deaf person’ with ‘not really a cure’ and choosing to be implanted.
“That bigoted 19-year-old who labelled Simons an abuser probably wanted to deny her child the benefit of those choices, but there are always extreme elements in any community.”
I think it is a bit harsh by anyone to call a 19 year deaf person, who shared her opinion in what she thought was a safe setting, a ‘bigot’. She is still a young person herself. Not much has been explored about why Simons wanted her daughter to have a cochlear implant – I don’t think it was purely philanthropic as she stands to benefit as a mother.
“It now works really well for me and the chances are it could work well for Maiya, too, but her mother knows full well that it won’t give her perfect hearing.”
This is exactly the point. I am not sure it Rita realises this at all. In fact, I think she is hoping for a near cure.
“Thanks partly to cochlear implants and better hearing aids, the numbers going to deaf schools have fallen sharply, leading to a weaker and less vibrant deaf community.”
This statement is oversimplified. There are other influencing factors such as the changes in how communities convene, the working men’s club/Deaf clubs are generally going out of fashion, it is easier for young people to communicate via text, … the community is still there but it is taking a different form. Young people with cochlear implants are seeking out the Deaf community to find peers like themselves. That sentence created a rather ‘doom and gloom’ picture which is not exactly what is happening on the ground.
John has just fed into the old media mill that ‘cochlear implants/medical interventions’ are good and the ‘Deaf community’ is bad with a little twist of ‘let them learn to sign’. It is too superficial for my liking and it doesn’t touch into the cultural, political landscape that governs how people see the implant as a metal object under the skin, a magnet, a tinning sound, “a spider in the head”, a cause for further injury and disease, a money making machine, a support for oralist ideologies, a false hope and an over expectation on the child. I am glad it worked for John Cradden but there is more for him to discover as a Deaf person before he can make these conclusions.
Editor
December 20, 2012
I agree you have a point that there’s more to the diminishing numbers of Deaf schools than simply CIs.
Though I think you’re not seeing the balance that’s there in this article. John hasn’t said, or implied that “CIs are good, and the deaf community are bad,” there’s a lot more balance here than that.
Indeed, John’s pointed out the limitations of CIs, even as he’s said that he benefits from them. He’s also given some weight to the Deaf community point of view.
Further, it’s clear that these days, not all Deaf people see CIs as “a metal object under the skin, a magnet, a tinning sound, “a spider in the head”, a cause for further injury and disease, a money making machine, a support for oralist ideologies, a false hope and an over expectation on the child” because more and more Deaf people are having a CI, and still signing, still part of the Deaf community.
The feeling in the community is a bit more complex than you’re making out here, John.
John David Walker
December 20, 2012
And as yet, you haven’t asked the views of the so-called ‘bigots’ to provide a different opinion? Is this really a balanced view or is it just idle journalism to support the view of the editor?
Editor
December 20, 2012
There is consideration of the Deaf community (and let’s be clear, one person was described as being “bigoted”, that’s not a description of the whole community) in this piece.
It’s a comment article which by its very nature, is expressing a point of view. It’s responding to a particular incident which was broadcast and then given wide publicity recently.
I happen to think it shows a good level of balance, because as I’ve said, it addresses some of the limitations and also benefits people get from a cochlear implant, and also makes the argument that there’s a signing world to discover as well. It also says that CIs are not for everyone, which I’ve written about personally before.
Of course one article can’t speak for absolutely everyone, or sum up every point of view, but the situation isn’t a black and white one anymore, there’s a lot of grey, and I personally think the article sums that up.
Editor
December 20, 2012
I should add – this article was first published a week or two ago, in Ireland – and was published here because I thought it was interesting, balanced, and an opinion we haven’t often heard. I stand by that, but also recognise (as has been shown!) that not everyone’s going to agree with it.
Robert Mandara
December 20, 2012
As I have said before, I think the 19 year old was just expressing a fair opinion in a setting where Rita appeared to be seeking a balanced perspective. Whether or not you agree with her view, it’s unfair to call the 19 year old a bigot.
wmager
December 20, 2012
I don’t think she was a bigot – but her statement was definitely bigoted.
wmager
December 20, 2012
I think this is a great article. I can empathise with a lot of this both as someone who’s recently had a cochlear implant, and as someone whose own son might one day benefit from one.
I don’t really understand why this is a black and white debate – either you’re for them or you’re against them – and either you have a cochlear implant and you’re hearing, or you don’t have a cochlear implant and you’re deaf. There are deaf signers with cochlear implants, and there are deaf people who don’t sign. There’s no black and white to this argument, only varying shades of grey.
For example, I’ve just been told that a well known deaf person came into the offices where I work yesterday and was literally FURIOUS that I’d had a cochlear implant. He was outraged that I’d had one, and kept asking ‘But he’s deaf? Why? WHY?’.
Why not?
A little extra hearing will come in useful for me hopefully, but I’m probably always going to be deaf, even with this implant (or transplant as one of my aunties called it the other day). It’s a personal thing for me and it’s certainly not for everyone… but for someone to get outraged that I’ve been somehow erased for the deaf community is, well, just a bit odd.
Perhaps there’s a few deaf people out there that need to take a step back, and to consider whether their own personal views and experiences actually correlate to those of the wider community as a whole.
Joanne
December 20, 2012
As a Deaf person who does not sign more than at a basic level, but who has not had CI, I can see both sides of it. Possibly this kind of operation should be left until the child is old enough to make an informed preference. If I could wave a magic wand and hear, maybe I would, as I miss things like music. However, I would not be doing the fantastic job I have today and probably would not be living the life I am living if I had not been Deaf. I think there is too much focus on fixing everything. Has anyone mentioned the Social Model of Disability?? We believe people have impairments but are disabled by the barriers that society put before them. If everyone was taught to sign as a matter of course from infant school then Deaf people would not be disadvantaged.
Karli
December 20, 2012
Ok, in this article a mother is called “abusing” because she did want to give her child C.I. – I was called (not now, but about 6 years ago) the same,- for NOT wanting to give C.I. to my child. I don’t care what people say, I listen to my child and my heart and if they think its abuse its their problem. Worse is that it seems if you have hearing aids or C.I. they can take away the sign language by not granting sign language classes for families …
Editor
December 20, 2012
That’s equally wrong, Karli. And I believe signing should be available for all children with some degree of deafness, and families encouraged to learn.
Andy
December 21, 2012
There are interesting and valid arguments on the side of people who don’t believe implants are right for deaf children, but those arguments won’t be advanced by labeling parents, who are struggling to come to terms with what has happened, as child abusers. They’re normally just trying to do the best they can for their kids in a new and difficult situation.
The best way to convince parents that implants are not the only option is by showing deaf culture at its best, a positive choice. Deeply insulting the parents of deaf children, at a time when they would be looking for reassurance, does the opposite.
It’s attitudes, not implants, that threaten to weaken the deaf community.
nochevieja alicante
December 21, 2012
In fact when someone doesn’t be aware of after that its up to other visitors that they will assist, so here it takes place.
Shaneybo
December 21, 2012
Everyone: we have to be careful here – Rita Simons may have taken the “abuse” comment out of the context or even twisting it a bit to make her look like a victim in the ugly “them nasty deaf people” politics – we know how high strung and uber-sensitive most parents are about their deaf children. That is known as Surdophobia. It is a very serious condition that is harming to thousands of parents and their deaf children. Most of our problems are because of the parents themselves really. They are the invisible elephant in the room of deaf politics 🙁 it is easier for parents to have access to information nowadays – what with the net, better networking and all that…but no, they just want to undeaf their deaf children.
Most Deafies does not care if you go and have a CI – we just don’t exclude you. In fact, some Deafies are pissed off here in Dublin that no one really objected to them getting CIs so they would go and make up stories that people are against this that this. One good example is that a deaf mother told me that the Irish Deaf Society (our BDA here) is against her daughter getting a CI. I don’t buy this because the IDS have enough stuff on their plates and don’t have time to go and object to deaf adults’ personal choices.
We do have issues with parents abusing their deaf children by refusing them the right to learn British Sign Language, have deaf friends and have access to the Deaf Community. That is a serious emotional/psychological/mental abuse. Replace the word “deaf” with gay/Jewish/Muslim and you will scream homophobia, anti-Semitism or Islamophobia.
As John Walker said, Rita considers the CI as a near-cure – that is if her daughter is quite lucky…but it doesn’t give Rita the right to reject her daughter’s deaf identity, her right to have deaf friends her age and her right to have deaf adults as her role model and learning British Sign Language.
Rita sees “deaf adults” and our community as a threat – and a disruption to her efforts to “normalise” and undeaf her daughter. She was shocked by the 19 yo deafie because she didn’t expect younger deafies to be this politicised. Interesting to see how she have ignored older deafies yet she takes younger deafies. It implies that the deaf people she likes are the younger ones who have no “real voice” – we have see that many many many times in our own parents (like it or not) – that is surdophobia we are talking about.
I was told by several parents that its easier for most parents to be around deaf children but not deaf adults as they are VERY scared of them.
Taking advice from deaf adults – it is too much for Rita – most parents don’t like to be told what to do with their parenting. The reason why we deafies “interfere” is that we don’t want the same thing happened to us happening again to their deaf children. It is easier for them to think “Oh, I am sure I am a better parent than your parents anyway…”
We should not be punished for the sins of our parents 🙁
John Cradden (@johncradden)
January 6, 2013
Shaneybo,
I’m not really sure where to begin in responding to your comments, but I’ll give it a try!
You’ve already made a couple of interpretations about what Rita believes about the whole cochlear implant thing that I think are wrong. First, you (and John Walker) say that Rita believes that the CI is a near-cure – she didn’t say that at all. She said: “We know it’s not a miracle cure and her hearing won’t be perfect.” Second, that Rita sees deaf adults and the community as a threat. Again, where in the article did she say that? She said, explaining how she came to understood why some deaf adults were against her getting a CI for her daughter: “It comes mainly from people who firmly believe that deafness should be embraced rather than treated as a physical deficiency that should be corrected. I totally respect their point of view.” What does she not understand, or need to understand?
At the same time, you’ve also hit the nail right on the head about why many hearing parents of deaf children are scared of deaf adults (something that I can well believe), but without explaining why (besides the simple fact that most parents do not like to be told how to parent).
But I’ll tell you why. The politicisation of the Deaf community, while absolutely necessary on one level as way to fight and advocate for the linguistic rights of those who use sign language, has also infected the message that you try to impart to ‘scared’ hearing parents. Using words like ‘abuse’ is one extreme example. It is utterly alienating to them and puts them off. The message needs to be framed in a different way for them.
For instance, as a hearing parent of a deaf child, you don’t need to understand straight off the deaf civil rights movement (or whatever you want to call it) to be positively disposed to the idea that learning sign language and teaching and using it to your deaf child would be a Very Good Thing Indeed. You certainly don’t need to couch your argument with words like surdophobia (I had to look it up), or use words like ‘abuse’. That was very much my point in the article. (I’m disappointed that you yourself haven’t restrained yourself from using the word abuse in your own comments.)
The deaf community must respect the right of parents to make whatever choices they make for their deaf children, but also realise that the language they use to make their case for teaching sign language to their children (even to the extent that a parent could be advised not to get a CI for their child) is neutral, balanced, practical and totally unpolitical.
Hearing parents are not remotely interested in making political choices or fighting for the rights of deaf people. They just care about their child. They might get more interested in deaf issues later on or, indeed, their child may grow up to care – and if more of them end up doing so, then the deaf community will successfully survive and adapt even as technology moves on and stem-cell research continues, as it will do.
By the way, I think it’s a good reflection of how attitudes (at least in Ireland) have moved on that – as you say – few in the Deaf community cared less when several prominent members went and got CIs. They’re still deaf after all, as I am too. The difference is that we’re ‘bi-cultural’ – best of both worlds. I think most hearing parents could learn to like that idea very much, and many already do, I’ll wager.
Shane Gilchrist
January 6, 2013
1. John Walker and others (including me) didn’t get all the facts from your article – we read the articles, comments made by Rita Simons, her history, how she reacted on TV, how she acted there in that documentary (we deafies are very good at reading body language) – John Walker has worked with hundreds of deaf children, dealing with their parents etc – and me with my many deaf friends during my formative years, staying over at their parents’ houses etc (all the normal stuff normal kids do) so we recognise
2. Like it or not, hearing parents do make political choices. Let’s say 90% of the stuff on the net is quite pro deaf, pro sign language, pro deaf community blah blah. Guess what? Parents runs for the Holy Grail i.e. “hearing restored” or “normalisation”. Better access to information nowadays than back in the 1970s.
3. Surdophobia is not a new concept (just a new name) – it’s long around – since deaf schools were first started in the 17th century to give deaf kids and deaf people some space to develop our deaf identity – of course, the surdophobes hated it and since then, they turned everything political, ruling and dividing. You know what happened to Ireland and India after the British Empire left. Paddy Ladd talked about colonialism leading by oralists, surdophobes and paranoid parents.
4. you haven’t addressed my most important point: why did she ignore deaf adults yet she got upset by a 19yo saying “abuse” – that reminds me of the nuns & the priests I grew up. I am writing a book about a powerful hearing nun who managed to cause a lot of divisions in the deaf community yet normalise and formalise surdophobia as if it’s ok for deafies to be treated with less respect. “But I did nothing to him, I was trying to help him get better” blah blah.
5. Most deaf adults *do* wish that the deaf community *did* help their hearing parents raise them.
6. A very interesting story for you. There’s a famous deaf leader my age. She thought her parents accepted her deafness and let her be Deaf. It made her strong and proud. Then she had a deaf child. Her parents went into “mourning” – it almost destroyed her world – her parents’ surdophobia wasn’t dealt with at all. Blah blah blah. Luckily everyone managed to get it sorted out and the mother apologised for being selfish by not accepting it in the first place etc. And my own father apologised for being a surdophobe too when I was 21 (of course we didnt know the word back then). That is a story I will tell you over a pint or two!
7. “abuse” is a very loaded word, yes. Are we trying to play down the serious harm done to us and other deaf kids during our childhood & formative years? I have a few deaf friends who have committed suicide and many more will do so because of surdophobia and the mental torments they have to deal with (when their families doesn’t accept them being deaf etc etc)
Until we accept the fact that it is our own parents who encouraged (without knowing it) surdophobia and a culture of denial in our big family (the deaf community), leaving us with lifelong mental issues etc even into our old age. Rita Simons’ comment “We know it’s not a miracle cure and her hearing won’t be perfect” – I heard that many many many times from hearing parents and they use it as an excuse not to learn sign language, accept their deaf child’s identity and accept their child’s right to have the deaf community as his/her other family. And her other comment about deaf “fundamentalists” (no she didnt use the word) “I totally respect their point of view” – yea, we heard the same stuff from homophobic politicians, churchmen and social workers in the 1980s when talking about gay rights and gay liberation etc. Oh yes, parents don’t like to be told how to raise gay kids because they themselves are not gay. What they do? Would you advise them to go and suppress their kids’ sexuality in a very discreet way?
It is a real mess out there. It is not all about politics but all about psychology – our parents are/were fucked up because of their surdophobia. And it affects us, their deaf kids 🙁
John Cradden (@johncradden)
January 7, 2013
shane
Whatever about your other points, you seem to be missing my key one, and the point of the article.
I’ll say it again: let’s reserve the use of the word ‘abuse’ to instances where it can be clearly proven that the alleged perpetrators were fully and deliberately intent on causing some kind of harm. It is simply not acceptable to accuse a hearing parent of deaf children of abuse if they decide to give their child a CI or even decide not to use sign language, no matter how badly informed or ill-advised you think they may be. By all means try to persuade them otherwise but I respectfully reckon that by using the kind of words you are using here, your message will fall on deaf ears (no pun intended, honestly! )
Oh dear
January 18, 2013
Whether the 19-year-old woman ‘is’ a bigot for using the word ‘abuse’ would depend on her context of the said word. Strictly speaking there is no ‘bigot’, as it IS an opinion, no matter how tasteless it is, no matter how much you disagree with the opposition.
The woman was not exactly a bright spark. Like most deaf people with limited English grammar and limited vocabulary, I suspected that she was misunderstood. If only we could ask her to explain her context of the word ‘abuse’ and what she was trying to say, some of us then could have explained it to Rita using better grammar. Rita heard the word ‘abuse’ and then took her own context of the word, probably similar to ‘sexual abuse’, to become ‘horrified and deeply hurt’.
Rita was wrong to react in the way she did as she should have taken a cortical-thalamic pause (Null-A pause). She could have asked the girl to explain her context of the word ‘abuse’. To me it was simply another classic case of a conversation between a deaf and hearing person that has gone ‘wrong’.
John Cradden labelled the 19 years old as ‘bigoted’. This is a typical response by people who cannot accept that other people have different opinions/views. Wmager said, ‘her statement was definitely bigoted’. How can an opinion be ‘definitely bigoted’? Nonsense. Both are wrong in my opinion as neither, as far as I know, knows what the context of the word ‘abuse’ was when she said it.
Remember, ‘the word is not the thing’.
Miami A. Fawcett
February 1, 2013
I have received a common slightly similar to Simons’, and as the mother of a profoundly Deaf child it was also very painful to hear.
The truth is, unlike perhaps many hearing parents I am well aware that hearing aids and cochlear implants, no matter how successful, won’t change the fact that my son is Deaf. It’s something that I fully understand and accept – he is different, and to me he wouldn’t be the same little boy that I love if he was a hearing child – his Deafness is a part of him. Offering him the chance to have a cochlear implant if he qualifies for one is an attempt from me to offer him a chance to hear, not a way for me to try to ‘fix’ him.
To be honest what is really harming the presence of BSL in this country is how hard it is to learn for people like me who do not live in large cities and have no access to local schools/colleges who teach it. I strongly believe that my little boy should learn it as it is the language of the Deaf community to which he belongs to, but its definitely not going to be an easy road for me.
I think that people are just naturally scared of what they don’t know; a hearing person cannot understand what it’s like to be Deaf and a Deaf person who has never heard can’t understand what its like to be hearing. Whether one side is right and the other wrong, we’ll never know – but so long as a parent is raising their child with love, self-respect and confidence, whatever their decision, I don’t see how any form of ‘abuse’ can be perceived!
vivianunger
May 1, 2014
I agree with Walker. Calling the 19-year-old girl a bigot was utterly unnecessary and hardly contributes to tolerance & understanding between the hearing and deaf communities.