The Secret Deafie is a regular column about deaf experiences submitted anonymously by different contributors. If you have a story you’d like to tell, just email thelimpingchicken@gmail.com
So we all saw the latest video that hit the media about the miracle that is cochlear implants. Emily Howlett explains it well.
But what about what happens on the flip side of the coin?
I am, supposedly, medically, the perfect candidate for a cochlear implant. I am profoundly deaf with a progressive loss. I come from a hearing family. I have always used my hearing aid well, I am a good lip reader. Tick! Tick! Tick!
Except it turned out I wasn’t.
A few years ago after all the tests and checks I was approved for a CI and went to the hospital to have my operation feeling a mixture of apprehension and excitement. I was switched on 6 weeks later.
There’s no video of me being switched on, if there was – I promise you it would be rather underwhelming. I was underwhelmed. There were some mechanical beeps and distorted sounding buzzing that seemed to sweep up and down when the audiologist spoke.
In short, it sounded awful.
Give it time, the audiologist said, give it a few days and you should start to make sense of the sounds. I knew this was how it was supposed to be at first.
However, the days turned into weeks. The weeks turned into months. Appointment after appointment I struggled to make sense of the mashed electronic noises in my head. Still preferring the hearing aid in my left ear over the CI. It just never got clearer. They couldn’t explain why.
Eventually, after 6 months it was a mutual decision between me and the clinic to stop persevering. I was slipping into depression, I had two very young children, I was severely struggling my job in the public service and generally things were rock bottom.
So after months of trying to make sense of the distortion, the CI came off. It officially hadn’t worked out for me. A very hard decision for me to make after so much promise.
Over the next year I was met with comments from other CI users or people who knew a bit about it, such as “you have to work hard at it you know” and “did you expect it to be an easy ride?” and “are you sure you wore it for long enough?”.
I can assure you my answers were Yes I know, no I didn’t and yes I did, respectively. I didn’t go through the operation and recovery for fun you know.
Fortunately, they implanted my already redundant ear, so I hadn’t “lost” anything I didn’t already have. Chances are that using the ear which had more recent “memory” of hearing, may have had a better chance but this just wasn’t and isn’t something I am willing to risk.
These days I hold my head up firm and have faith in myself that I gave it my best, I did give it a good go. I still hold tight of my deaf identity as I would have even if it had worked. However the outcome, it was a worth a try and there are no “what ifs” in place in my mind.
I still maintain that CIs, when they work, which is a lot of the time, are an amazing piece of technology but really, they are nothing more than just extremely powerful hearing aid technology. When they are switched off-hey presto, everything goes quiet again. Just like a behind the ear aid.
…and they aren’t for everyone.
…and they aren’t miracles.
So if I get tetchy when I see yet another amazing “hearing-for-the-first-time”-emotional-aren’t-CI’s-just-amazing-switch-on-video, I hope this explains why.
The media circus that stems from those videos, quite frankly just makes those who have had less than positive experiences feel like they just didn’t try hard enough.
The Secret Deafie is a regular column about deaf experiences submitted anonymously by different contributors. If you have a story you’d like to tell, just email thelimpingchicken@gmail.com
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Nikki
April 4, 2014
I I totally agree, my son was fitted with a CI and has not taken to it at all. It all depends on the individual. Now my son can communicate through sign, he is much happier
Natalya D
April 4, 2014
Thank you for writing this. I am sorry people assume you were lazy and didn’t work hard enough etc. Medical procedures are really personalised even when they have a statistically high success rate with good reasons for you personally for it to work. All any of us can do is make our own decisions, try and hope – sometimes things don’t work out.
I find it fascinating that “we as a society” blame the person when a CI doesn’t work out in a way we don’t blame people if another operation isn’t very successful. Very ‘moral model of disability’ and quite unpleasant and hurtful to the person who has the double struggle of a not-worked CI and people’s judgement afterwards.
Linda Richards
April 4, 2014
Thank you for your story. I’m sorry your CI didn’t work for you. We never hear much about the ones who ‘failed’. Failed what exactly?
I recall learning of a young child who was implanted in one ear …. Didn’t work. They did the other ear ….. Didn’t work. They went back to the first ear and yes, did a third implant….. Didn’t work. Each time the child took it off, saying it hurt, it was forcibly replaced by the teacher of the deaf (and head teacher too).
So, tell me Deaf school – one that used BSL too – and guardians of our children when they are with you, why does this child, who was having all these operations aged 6-8, now present as a confused, bitter, depressed adult? Oh, and where was the education they were supposed to have had given the amount of time lost on ‘fixing’ them? And ‘fixing’ them to be what exactly? The system let this child down and there was no one saying ‘Stop!’. This person is …. Still Deaf. Still without intelligible speech. Never been employed. How did the system manage to devalue and destroy this child? I shake my head at these sad experiments with minors unable to speak up for themselves.
It’s a strong analogy but this is akin to Nazi-ism. Experimenting with our children and adults when the ‘failure’ rate is so high and ‘high’ in more ways than one is criminal and it’s appalling that safeguards we take for granted in other areas (Trades Description Act, Financial Conduct Authority, Sale of Goods Act, and so on) just don’t exist in this arena. Oh, and our national Deaf organisations are very quiet on this topic.
You, at least, could make a decision to cease with the CI. I’m glad you are still the same underneath and that you know your value. A CI is exactly as you say, a glorified hearing aid which is not a miracle cure, nor will it instaneously give the recipient clear speech – another misnomer that’s often spouted. I hope you enjoy your life and your family. You don’t need a CI for that.
alicehadams
April 4, 2014
Thank you for sharing your story. I watched the recent switch on video and the subsequent debate about CI’s on BBC news in my BSL level 3 class and after a discussion afterwards we came to the same conclusions that it is wrong to try to ‘fix’ deaf people with what is essentially a powerful hearing aid as you put it. I can see how CI’s may benefit some but personally I am all for the promotion of BSL and can’t help but wonder why it is not taught in schools the same as other languages are. As somebody in my sign language class put it children learn French, Spanish and German at school so why not BSL as well?
With the introduction of the new born screening programme for deafness, I can understand that hearing parents who have a deaf child may be scared at the thought that their child is deaf, and the GP’s who soley offer a CI as a ‘solution’ must be a tempting offer for them but this shouldn’t be the only choice why not offer baby sign or BSL as well?? Why must deafness be something that must be ‘fixed’ because,hearing is ‘normal’??
Having a deaf identity is something to be proud of and being able to be part of such a rich culture and community should be celebrated not feared. After all,being yourself and being true to who you are is the most important thing. Nobody should be forced to be something or become something that they are not.
Anon
April 5, 2014
True, I feel CI professionals do try to hide the failures. There needs to be more of balanced views to be known. CI doesn’t work that great for me either – I had it implanted when I was 16 and I’ve had it for thirteen years now. It already failed once so I had another replaced. I now use it mainly for environmental sounds. And it is lovely to still be able to switch it off whenever I can.
bozothewondernerd
April 8, 2014
I believe that if we want BSL to be taught in schools as, ‘just another language option’ then we need to work hard at ensuring that there’s a, ‘BSL box’ for the secondary-school educators to tick. Secondary education in Britain today is so sharply focussed on exam results and grades that there’s no space or budget for serious learning that doesn’t deliver on the exam certificate front. It’s possible to achieve – the Welsh have done it – but it’ll take a long time and a strong and focussed effort – anyone feel they’re up for the job? (The advantages of being multi-lingual to ANY degree are significant, but I truly feel that knowing a visual language as well as an aural language must add a huge dimension to a person’s character.) The first task, of course, is to get across the message that BSL really is a language in its own right, and not just an arm-waving poor-man’s version of English – despite having been around deaf and Deaf people for years it’s taken me a long time to come to that understanding.
anon
August 5, 2014
An well written and candid article – thank you Secret Deafie and thank you Ed for uploading this piece.
As a parent and a professional I can say that we don’t hear enough in the media about what happens when implants do ‘not deliver’.
On the other hand, the medical professionals themselves are aware of this and are becoming far more realistic about what this technology can and cannot deliver. My gripe is that the educational professionals don’t seem to have fully grasped the implications yet and are still keen to promote implantation to parents of deaf children and teenagers without fully considering the needs and circumstances of the Deaf child. Immigrant hearing families with deaf children seem to be especially vulnerable/susceptible to the influence of Teachers of the Deaf promoting cochlear implants. And they are the families who are least able to access information about the procedure and its consequences.
Yes, a timely piece. Thank you.
Martin
March 23, 2015
I can’t believe people don’t think deafness shouldn’t be overcome. A person who doesn’t want to hear is just a bad as a immigrant who doesn’t want to learn the language of their new country. I received my CI last month and all I “hear” now is beeps. I can’t even hear my own voice which makes understanding any noises I might get very difficult. Unfortunately, the hearing I had with my hearing aid is now completely gone, since the implant is stuck in my cochlear. (Only one ear worked, since I fractured the other in an accident). I may not hear my wife and kids again. Not too impressed. I expected to get the ‘chipmunk’ or ‘robotic’ sounds but get FA.