My life as a deaf person has been filled with a lot of noise (pun intended, but still terrible) about cochlear implants. I was born around the same time that the technology was starting to really develop and become, if not common then at least known.
The cyborgs had become a reality… Bionic ears!
I’m sure my father, who spends his entire life among technology and computers, would have found some positives in a daughter he could hook up to the mainframe, but my mother obviously overruled him.
I’m joking, of course… But it didn’t matter what the doctors or health visitors or neighbours said; my parents decided their little lady was not for implanting.
I fully understand their decision; and I am grateful for it. This was a time when the operation involved carried many more risks than it does now, because it was a relatively new procedure in terms of advances and expectations.
In my youth, I got enough ‘hearing’ from using hearing aids, loops, all those massive pieces of equipment that got in the way during P.E. and made you look like a popcorn seller with a tray hanging around your neck.
And now… Here I am with my own little person. Because I am deaf, my baby boy has already been the subject of several million conversations about whether or not he will have any hearing loss.
And whether or not, if he did, we would give him a cochlear implant. And although I see these conversations, I’m not part of them. Not yet; because it isn’t an issue yet. And I honestly don’t know what I would do if it was.
I can feel the tremor in the earth just writing that last sentence.
There is one thing, and one thing only, which I despise about cochlear implants. There has only ever been one thing and it is this; the doctors who present them as ‘a cure.’
A cochlear implant will not ‘fix you’. It will not ‘make your baby hearing’, and to use such descriptions to convince people, especially confused, scared parents is a terrible misuse of knowledge.
I know three hearing mothers of implanted babies, and two of them fully believe their child is now hearing and can be treated as such, with no support or thought given to their ‘cured’ hearing loss. That is so blatantly untrue I don’t even need to explain why, do I?
But, and this is the thing… That is my only problem with it.
Let’s not do that thing of pretending cochlear implants are a threat to deaf identity and culture; why can’t a child with a CI be fully immersed in their deaf heritage as well as having access to some sounds? Because that is all the CI does; it allows access to sound, exactly as a hearing aid does, but on a more complex level. It doesn’t stop anyone being who they are, and it doesn’t stop them being deaf.
“But you’re drilling a hole into a baby’s head!”
That is a tough one. It is an operation, and it carries risks. Although these may well be less than in previous years, they are still real. But there is no drilling of holes with a jackhammer; it is less invasive than most people think. It is certainly less invasive than I thought before I researched this.
Most importantly though, the operation risks mean nothing to anyone who is not involved. Only the parents, or the child, or the person, can weigh up the risks against the benefits in their personal circumstances, and nobody else has the right to comment on that.
The fact that the implants look ‘grotesque’?
Oh, seriously? This isn’t the 18th Century; people with disabilities have used ‘add-ons’ for years, and now almost everyone has some kind of communication device in their ear. There’s never been a better time for pimping your hearing aids and cochlear implants.
Having said that, seeing a big electrical thing on the side of a tiny head is still… Well. I would be lying if I said I felt 100% at ease with it. But, why? Because it’s unnatural? In that case a wheelchair is also unnatural. But they are essential equipment to the people who use them, and it is my own failing if they make me feel uneasy. Mine or society’s, or a bit of both.
Speaking to an audiologist recently, I asked her, “Would you implant your own child, if they were deaf?” Her reply?
“Oh, yes. Definitely. You have to see it from the other point of view. By implanting a child, you take away their decision to have the operation. That’s true, but if you leave a child with no hearing at all, during all their developmental years, you have taken the decision away from them to have access to the sound in the world. You have taken away their opportunity to be part of the hearing world. Whereas if they are implanted, they can have all of that access but nothing stops them from living all aspects of ‘deaf life’ as well. If their parents are open-minded enough, that is… Whether a parent does or doesn’t have their child implanted, they have taken a choice away from them. They just have to do what is right for them, with clear options and no false expectations…
“Besides, if the CI is a struggle, or stopping them exploring their deaf identity, they can just take it off.”
Can they, though? Can you just ‘take off’ something your parents went through the agony of deciding to give to you? Can you be comfortable with a ‘dual’ identity? Can you be who you were always going to be, either way?
I think you can, if you want to. You can do anything, if you want to.
The thing you can’t do is second guess other people’s decisions about their children. And what you definitely cannot ever, ever do is predict how a child’s life will be affected by your decisions.
You just have to do your best. That’s what parents do.
Emily Howlett is a Contributing Editor to this site. She is a profoundly Deaf actress, writer, horsewoman and new mum. Emily used to be found all over the place, but motherhood has turned her into somewhat of a self-confessed homebody. She now has not one, but four grey eyebrow hairs. C’est la vie.
Emily tweets at @ehowlett
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Andy. Not him, me.
November 22, 2013
I was brought up like a hearing child by my parents. Although they had to make allowances for some things, they preferred to put my foibles down to wilful badness rather than deafness. This is what parents of that era were told to do, my parents were not evil just badly informed. Seems to have been a time of unprecedented child cruelty.
I was a Deaf kid at school and a Hearing kid at home.Very difficult. I have a CI now because my hearing was rapidly heading for zero but for the previous half century or so I was 100% reliant on hearing aids unless in Deaf company. Hearing aids didn’t really do it for me but they were all I had.
I delayed getting a CI for as long as possible because the technology at that time, probably the same time as Emily is talking about, was not all that great. It was a “better than nothing” option and I was still getting by with twin aids, just. But the situation got worse and it became a case of CI or silence. I actually have better hearing now than I have ever had in my entire life. I can hear so much more. My only regret is that I could not have this when I was 20 rather than 60. My life would have been so different.
As far as having babies implanted is concerned, it is never intended to make them hearing, but are the parents being told to treat them as such?
We don’t know what advice is being given by advisors who may or may not have an axe to grind. Therefore the more information we get out about the pro’s and cons of the process then the more empowered people will be. Truth will out, as they say and the more truth the better.
The best advice >at the moment< is that the earlier it is done the better. Because from the earliest age babies hear sound and eventually learn to emulate it. They learn to recognise sounds like Mummy and Daddy speaking and eventually their own speech follows.
Deaf babies are of course brought up with a visual input and process that, it isn't actually a problem at that stage. But it is a fundamentally different upbringing and they don't learn the natire of sound until later.
The difficult part comes later if the child decides, perhaps as a teenager that they want to have a CI. The problem with it is that having had the op and before they can learn to hear they have to first go through that period of learning what sound and noise actually is, it's the baby stage. They have to do the processing just as babies do. This takes quite a long time and in adults it may never happen. People who have never heard sound are much more likely to have problems with a CI than people who have had some hearing and learned the nature of sound and speech.
So that's pretty much the argument for having it done early. It's still not an easy one but I would say to anyone faced with this : Get the best information you possibly can from all aspects and then make your decision. If anything does not go to plan at least you can say you did your best.
John David Walker
November 22, 2013
There are two issues here that I would present as a question:
1. How does one define ‘access to the hearing world’? If it is a case of hearing ambiance sound, or producing intelligible speech or hearing a conversation in some settings – I can understand how one might come to this conclusion. But hearing life is not like that. Being hearing has more subtle references to the use and manipulation of sound – such as conversations about melodies in music, the way the voice is pitched and rolled to draw cultural emphasis, or engaging in a rambling conversation with a group of people in a noisy pub – being hearing is a lot more than just hearing a doorbell ring. I think the audiologist is being presumptuous about the value of the cochlear implant and what cultural transformations and access the implant will give to the child.
2. There is a question on what is the value of a ‘deaf person’. We still live in a world where it is more economically beneficial to be a white, male, at least 6ft tall with blue eyes, and economically active parentage. Social mobility (i.e. moving through the classes) is still related to becoming more male, whiter and, perhaps, having more hearing. Is it possible for us to say that ‘it is ok to be Deaf’ in the same way that ‘it is ok to be a woman, a black person or a disabled person?’ The audiologist was painting a bleak picture of deaf life based around her own assumptions about the value of hearing life – this person is placing a value on something that they don’t really understand – of course they don’t, they are not deaf.
My comment is coming from someone who has been brought up to be more ‘hearing’ and instead found greater value in the Deaf community, which is impossible to gain if one is not open to engage with them.
rob
November 22, 2013
I grew up in a Hearing family environment. Tough as they had the attitude of “ignore the problem and it wont be one!”
So I spend my childhood lost in my own world of books, TV, and toys. I was a very quiet boy, well mannered, and “too good to be true”.
50 years later, only one member of my family and two kids finally appreciate my hearing loss.
Compared to a lot of Deaf people, I was lucky to get a good education, but it did not stop the “battles” against the Hearing world and even against the Deaf world too!
CI for me is the last resort option when I reach ZERO. I have recently learnt that CI can now be combined with whatever hearing you have left so it means a combo of hearing aids and CI. So things have moved on even in the last six months.
Overall, I would never wish deafness on a child. Therefore I would do everything I can to maximise their chances in life, and enjoyment from the start. Deafness is not just a hearing problem, it is also a human communication problem which can develop all sorts of mental problems that will over time manifest itself later.
I think by now you will have guessed that I would consider CI for a child and on its behalf, depending on the level of hearing that child has. Not because it is a cure, but because it gives the best of what is available at the time for the well being of the child, to enter into the world at large with confidence, to maximise access to normality as much as possible.
Otherwise you are condemning a child to a lottery of a good decent school, and support of family/friends, and the lottery of equal access to further education, and in the end a job.
The alternative is unthinkable.
:-)
November 22, 2013
I can empathy you as it happened to me with my Deaf son – I told everyone including the families, professionals to back off cos it got nothing do with them – some was shocked but they did. My parents decided to learn BSL which was great as bought them closer to him and myself. Few years later, my son wanted to hear more, I was taken back, thought hard for long time – our families wasn’t aware because I wanted it be our decision without any pressures from others. We decided to go for it as it was something he wanted. Years later – he knows who he is and can adjust his languages signing or speaking to right persons – he taught us that it is not technology that takes away Deaf identity it is attitude that does. My only advice is tell everyone to back off and let it be your decision alone whatever it is.
Matt Brown
November 22, 2013
There is some evidence that children with CI end up performing worse at tasks such as reading than children with hearing aids – there is an advantage in early years but this advantages fades or even disappears completely by secondary school age. The reasons for this are complicated and are partly to do with the way implanted children are treated (eg. sometimes there is an assumption that they have been “fixed” and therefore need less support).
http://jdsde.oxfordjournals.org/content/16/1/24.abstract?ijkey=bd5c89c55002967d6cd9f80f5d13d14f13cf9877&keytype2=tf_ipsecsha
Robert Mandara
November 22, 2013
Whether or not to get an implant for a child is still a massive and difficult question for parents. As it stands, perhaps the best way for them to decide is to meet with children who already have implants to get an idea of what to expect for their child.
As far as implants are concerned, in the future I think the decision will get easier. If existing implant users decide to get their kids implanted then that will be a huge vote of confidence in the benefits of the technology. However, by then the decision might well be between stem cell treatments versus CI, so perhaps it won’t be easier at all.
Rob
November 22, 2013
To be honest stem cell treatment interests me more than CI. It makes more sense. I would not mind being tested and help to pioneer this forward for the sake of the future generations.
JJ
November 22, 2013
Do doctors really present them as a cure now, I very much doubt it. My daughter was implanted over 14 years ago and we were never presented with that view. In the intervening years I have met many, many parents of children with CI and through personal and professional encounters and very rarely met, if ever, a parent who thought their child was cured. Have you asked these parents or is this a conclusion you have reached because of the nature of the relationship and communication they have with their child? On the whole parents are very aware and understand that the technology is limited, they live with it every day!
My daughter who has numerous deaf friends with whom she communicates through BSL(we find it very useful too when she finds it difficult to hear what we are saying or she is not wearing her processors) recently achieved 9 GCSEs including English,English Lit and French I have no doubt that having her CIs made this possible. She is now happily at 6 th form doing her A levels at our local mainstream school that she has attended for over 5 years.
It is a difficult decision to make, we as her parents made the first she the second but there is so much to gain and you don’t leave anything behind. My daughter is still deaf and always will be but with her CIs has learnt to speak, love music and much more.
Emily Howlett
November 22, 2013
Thanks to everyone who has taken the time to leave their thoughts. It was a tough subject to write about, but one close to my heart, and a lot of others’.
My concern with CI’s being presented as a ‘miracle cure’ stems from my own experience and that of friends; surely there are doctors who give a broader range of options but I haven’t met them yet….
With stem cell technology… My understanding is that we are at least two generations away from it being a huge benefit to people with cochlear-related deafness. This is because of the massive leaps needed in understanding and technology to be able to implant new cells into each of the thousands of microscopic hairs in the cochlear. I would love someone to tell me that is wrong though, as stem cell technology is such an exciting prospect!
I guess if we did get successful stem cell work we would then open up the can of worms about whether deafness SHOULD be ‘cured’ again!! (as in the film The
Dawn Pennison
November 22, 2013
Having had my implant in 2007 (im 54 now), I can only say that the specialist in fact,kept on and on that it might not work, dont get your hopes up, cant believe they would view it as a cure…..its 100% improved my life,,,,,,,,,still have problems in restaurants and music is rubbish and from when I go to bed until I wake in the morning………I am back to being deaf…would I give it back…………not on your life
Wayne Kenny
November 22, 2013
Spot on. We’re non deaf parents. Megan has two implants. We want Megs to be bilingual, she may not want to be. We chose implant one, we like to think that she chose implant two. Implants are not a cure. Implants are helpful to some but not to all. Not being able to communicate with a deaf person is my problem not theirs. We only want to give Megan the opportunities to choose what she wants for herself, just like her sisters. As any other parent would.
David Walker
March 11, 2014
You’re spot on, too.
My son was born deaf and was “implanted” at 20 months, one of the youngest at the time. He’s now 15 and doing very well in a hearing environment. The experience has been tremendous, though trying for us all.
Just a few minutes ago my boy proposed a T-shirt with “I LOVE MY C.I.” emblazoned on the front. He has worn it almost every waking moment since it was first turned on, an he relies on it, almost exclusively, for communication even though he is a master lip-reader.
No, I don’t think being deaf makes one disabled, nor do I believe the cochlear implant is a sort of cyborg. Today we have options.
Our next major phase is learning American Sign Language. Thanks to the determination of many, and the miracles of this modern age, the path has been made easy, and my son with the “disability” has many options.
We will be there with him and for him; loving that young man as much and playing a part in his life no matter the path. Apprehension has turned into assurance, the unknown into faith.
Thanks to Emily for sharing her journey, her insight.
kdb71
December 4, 2013
Love this article, food for thought
Claire S
August 11, 2016
My son is 3 now and was implanted at 13 months, the rest of the family are hearing and it took a huge amount of research and thought to make the decision to implant. It was never presented to us as a cure and neither were we looking for one, we just want him to have the choice to speak and listen to language, music etc if he chooses to. We are learning BSL and are very invested in ensuring he is proud of the wonderful deaf child he is. I feel that hearing parents often get bad press on this, with some members of the Deaf community immediately under the impression that you just want your child to be like you and fix them. I just want like most parents, for him to have every opportunity and choice to be the person he wants to be.