“It took weeks for Kris to even look and say ‘I heard that,” says a mother of a deaf boy as she sits in the kitchen having a cuppa. She’s cautioning another mum of a deaf boy not to expect miraculous results when her child gets his cochlear implant turned on.
Miraculous results like those gone viral on Facebook showing babies and pretty women hearing for the first time and either breaking out a cute smile or breaking down with tears of joy have come to stand in the public psyche for what cochlear implants do. And of course, sometimes that is what happens.
But the reality for most is, as the mum continues to tell us: “It’s a lot of therapy. A lot of speech therapy. It’s a long slow process.”
That may come as a surprise to many people who have seen the numerous viral Facebook or You Tube videos; but what you don’t see in those clips are the times when maybe it doesn’t go so well, or the years of therapy; the tears or the or occasional deep disappointments that follow a switch-on that has failed expectations.
The Switch-On, a documentary by BBC Alba, the Gaelic language channel, follows five patients at the Scottish Cochlear Implant Unit at Crosshouse Hospital in Kilmarnock through the process of getting a cochlear implant from consultation to surgery and a bit beyond.
You’ll see what happens when a cochlear implant is switched on and it definitely isn’t material that would go viral on Facebook.
The first myth this documentary blows away is that cochlear implants are just for deaf babies and American women in their 20’s.
In fact, so the doc claims, most patients at Crosshouse have a progressive hearing loss and are adults. Another interesting fact is that only 5% of people who could benefit from an implant get the chance to be assessed for one.
The first patient we meet is a 75-year old gent named Craig. He could have been killed on account of his hearing problems. His wife explains how once, as they were waiting to cross the road, she said ‘don’t go’ but he only heard the ‘go’ part and stepped out. The oncoming car somehow missed him.
Profound deafness is “horrific” he says, before we see his two grandchildren asking him questions in the garden while they stare directly at the floor, rather than at his face, so he can’t to look at their lips for clues about what they’re asking him.
The biggest loss, he says, is losing the connection to his grandchildren.
When the time comes, the first words Granny speaks to him at the implant switch-on are: “What would you like for your tea?” But maybe what she is really saying is that she just wants her husband back; she just wants to be his wife again and ask him what he wants for tea. Just like normal; just like it used to be. Normality restored.
But we see that he still can’t understand her. This is as far from the Facebook viral video you can get.
Next we meet Mark, a man who has clearly smiled so much in his lifetime that he even looks happy when he’s sad. I read last week that people who smile a lot have better developed smile-creating facial muscles. That means that they can still look a bit happy even when they’re not. I think Mark is one of those.
He lost all his hearing in the space of ten months and is now on the verge of losing a whole lot more.
He cheerfully tells us that his social life has gone, he can’t listen to the music he loves, he’s on medication and now his job is on the line.
He’s a sign fitter and a colleague says (ridiculously) that he might have to be fired because he can’t hear the machinery in the workshop.
If I hadn’t become accustomed to this kind of nonsense I’d have thrown the remote at the TV so hard it would have flown out the other side, pentrated the living room wall, blasted into the garden and then remained in low level orbit.
The very notion that a deaf man can’t be sign maker is as ridiculous as an orbiting remote control. I mean, it cannae be that hard to figure oot! Use your heads lads.
I know a retired deaf sign writer and sign fitter who was self-employed and British Sign Language user. He ran his own business for 35 years and completed 7,000 jobs for his clients.
Who is that that man? My dad.
If there was a job that I grew up knowing for sure that a deaf man could do, it was making signs. Luckily for Mark the implant is a success, so as far as his boss is concerned, his job is safe and the Scottish Employment Tribunal Service won’t be troubled for the time being.
We meet three other patients of Crosshouse, each with their own interesting journey, and through their stories, The Switch-On gives viewers more of the truth about cochlear implants than a teary Facebook video clip ever can.
So the truth turns out to be that it’s not always celebration time when cochlear implants are turned on. For some people its just easier to make sense of the sounds that are being transmitted by electrode to the brain than it is for others.
Another thing you won’t see in a Facebook video is the reality of how Mark the Sign Maker’s cochlear implant will probably help him off the meds and keep him in a job.
Now, that’s got to be worth a like.
Watch The Switch On here: http://www.bbc.co.uk/iplayer/episode/b06sx1cb/cluinneamthe-switchon
Andy Palmer is the hearing father of a Deaf son, and is also a child of Deaf parents. He is Managing Director of the Cambridgeshire Deaf Association, runs Peterborough United’s deaf football teams and is Chairman of the Peterborough and District Deaf Children’s Society and teaches sign language in primary schools. Contact him on twitter @LC_AndyP
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Kerena Marchant
January 8, 2016
I’m Deaf and my husband was not Deaf. We had a Deaf child and My husband was told by the professionals that our son would not achieve if he did not have an implant. My husband scratched his head and said but my wife is a BBC producer and she is Deaf…? He was told he would regret not giving his baby an implant. I agreed to go “through the process” so he could make a decision that he could live with. At all stages in the process he felt that it was if you don’t, your son won’t… He was a scientist and a PHD holder and he was shocked by the lack of scientific evidence and certainties. At the end of the process he gave his answer. “No, no substantial evidence.” Our son, who is high average ability, was later diagnosed with a specific learning difficulty that means he can’t process sequential language. If we had given him an implant it would not have worked. Now our son is planning to go to college to study A levels with a view to doing architecture. His access to education has been through the spacial language of BSL, which will be his language through university. Through BSL he has learnt and is learning English with a view to being fully bi-Iingual. A cochlear implant is not a magic passport to success and inclusion in the hearing world. It is one of many potential strategies. It is sad that the money out into implanting Deaf children is not matched by improving the standard of BSL in education so another strategy is equally available.
Andy
January 8, 2016
Thank you for your comment and good luck to your son
Andy
January 8, 2016
Thank you
Robert Mandara
January 8, 2016
Great article Andy! I watched and really enjoyed the programme. There were some silly errors and misinformation in it but, on the whole, it was an excellent insight into the real world of cochlear implants rather than the viral nonsense we see.
Ever since cochlear implants were first introduced, I always said that I would never have one. Then things got so bad that two years ago, at age 45, I finally took the plunge. I have absolutely no regrets! I’m so satisfied, I’m in the queue to go bilateral. Thankfully I don’t live in the UK where, inexplicably and unjustifiably, you still need a second disability or to be a child to enjoy stereo hearing.
Andy
January 8, 2016
Thank you and best of luck
robertmduncan
January 8, 2016
Great article and great comment from Kerena.
Cathy
January 8, 2016
This story is something I have often thought about, not for the first time! I realised the hype on places like utube with people in absolute tears and histrionics over the cochlear implant, would not be conveying the whole truth about these wonderful devices!
It has become increasingly popular to have a Cochlear implant fitted now, not least because many deaf people want to know what it is like to hear. That is perfectly understandable, even though they are not the be all and end all of conversing and communicating with others.
I know a good number of adults with these devices now and from what I have witnessed there is no discernible difference in their behaviour from before the implant was fitted. By that I mean they still speak the same as before, although given I am profoundly deaf myself, I will miss small improvements, but even so I have not witnessed them chatting on the phone, they still text. i have not seen them listening to music or singing along to any music that maybe on in a room. They appear to be just as immune to sounds around them as they were before it was fitted!
These subtle observations made me realise that the implant is not quite as brilliant as the “clips on utube” make them out to be. This is one of the reasons why I have decided against having such surgery. Is it really worth it to be exactly the same as I am now? To me I don’t think it is. I would want such surgery to have a lifetime impact: ring anybody up anywhere and chat away; not having to bother with even the slightest email! Have low soft music on while ironing and revel in the joy of song; listening to the radio as you trundle down the motorway; react instantly to a tannoy announcement at the rail station and know that your train has definitely changed platform; jump when the kettle boils or doorbell goes; and above all to be able to converse in hearing groups so that ones life is not constantly characterised by ghettoeised living. It means I could join a creative writing circle, knitting group, coffee mornings, church spiritual meetings etc all without the slightest hiccup in communication! I certainly do not believe this would actually happen even after being totally accustomed to a Cochlear implant! And given that I can hear such things as a kettle boiling when wearing my hearing aids, the benefits to me would be barely worthwhile, except perhaps to deaden down the tinnitus!
These are the kind of examples I do not witness among those who now have the CI, they may indeed show differences at home, of course, but my overriding feeling is that they are not and never will give Deaf people the real independent life that many of us may actually crave.
Robert Mandara
January 8, 2016
Cathy, your observation is interesting on a couple of levels:
1) As someone with a cochlear implant, whether you as an outsider can see the change or not, I can only say that for me it has been absolutely life-changing. My family can attest to that. I’m amazed every single day at the things I can hear now which I couldn’t hear before. Keep in mind that the technology has made huge leaps in the past few years and is set to leap further in the future. Were the people you have been observing implanted recently or a long time ago? That will surely make a difference.
2) I spent 45 years with profound deafness, getting by as well as I could with hearing aids. In that time I have had to learn a lot of coping strategies, such as using email instead of phones. Because my experience of phones was so bad, I developed a phobia about answering the things. If you suddenly get better hearing, it can take years to adjust to the fact that you can suddenly do things which you’ve been scared of doing for so long. So, although I know that I can talk and hear on the phone, my default setting is still email.
pennybsl
January 8, 2016
Finally, a realistic article and link to the programme.
Huge sigh of relief after over 25 years of tension due to the awareness that too many medical and health professionals ignore, neglect, sideline or uninformed about Deaf-Ok options which are slowly penetrating their specialisms.
Refreshing, too, to read with complete understanding; a perfect description of how we Deafies (and hearing allies) cope…just about cope…. the constant, unremitting, unacceptable upside-down thinking of mainstream society who somehow have lost to ability to creatively, productively consider deaf employees’ role in the workplace.
“If I hadn’t become accustomed to this kind of nonsense I’d have thrown the remote at the TV so hard it would have flown out the other side, penetrated the living room wall, blasted into the garden and then remained in low level orbit.”
That Limping Chicken is capable of chucking eggs faster than a tennis ball machine.
Society – if you have nil/rubbish Deaf awareness, take note.
Ask us FIRST before imposing ridiculously defeatist ideas upon our roles within employment and social life.
The Deaf Force is amongst you with ‘weapons’ including rotten eggs to fight senseless prejudice.
Andy
January 8, 2016
Thank you Penny. It was jaw dropping to see that they were thinking of firing the man. Implant or not he shouldn’t have to leave that job.
Linda Richards
January 8, 2016
I started jotting down the statements or mistaken assumptions, cases of discrimination and poor or lack of support and alternative services as I watched this programme. The list grew and grew.
It started with the the clinican’s statement “You can’t undo it once it’s been done.” Yes, we know that but it is not said out there – that cochlear implants destroy all remaining hearing. So, if it fails, (and they do from time to time), then there is nothing, absolutely nothing.
Then I despaired for Craig that he and his family were either without any real support (lip-reading, lip-speaking, hearing devices, sign language classes, and much more) leading to a situation where his grandsons were almost contemptuous of him and the ‘nuisance’ he was for being deaf and that it was okay to SHOUT at him.
As for the staff at the hospital who continued talking when the patients clearly couldn’t understand them, never mind those who were far from lip-readable, who was assessing their communication skills?
Mark, whose job was allegedly at risk, should have been advised about his employment rights in order to challenge the discriminatory approach his employers were taking.
I’ve never been a fan of cochlear implants for children and I couldn’t help wondering if the implant had had any neurological impact on Rona as she appeared slower later and her eyes seem to droop more.
And, yes, in total agreement with Karena. Why, in this day and age, isn’t there equal funding going into the other choice – British Sign Language and Deaf education including Deaf schools? It’s a real alternative choice, it’s tangible and it’s probably cheaper in many respects not least for the mental health of our Deaf children.
Given the addition of the BSL(Scotland) Act to the statute books, shouldn’t this imbalance be redressed in Scotland? Its government has responsibility for the NHS services there. C’mon Nicola, give BSL and deaf education equal status and funding.
Anon mother
January 8, 2016
We have recently been threw the process of seeing if cochlear implants is an option for a child which by the tests at the hospital mentions on the programming then it is. We how ever have decided against implants for several reasons we do not believe it is the best option at the moment for our child.
We have found since saying no to the implants that we have had several letters sent to us as well as an appointment made that we did not in fact ask for. I called to cancel said appointment and was then called back by one of team, the way I was spoken to I found shocking I was told my child would never be “normal” would not meet full potential in education or gain a good career, that my child would not have many friends or peers who my child could communicate with. Also I was told I was taking away my child’s right to hear and they were very concerned for my child’s future due to myself and my partners wrong choices.
Im still very upset and angry with these comments and wonder why implants are deemed as some sort of mirical cure to “fix” deaf children/adults. My beautiful child is in no way broken nor do they need fixed.
I do wonder how many people have been pressured into agreeing to implants it really should be personal choice after knowing the facts of the operations and implants and the good and bad impact it could have on a persons life.
The programme was very insightful and shows a very different truth to videos on youtube and Facebook etc.
Good lucky to everyone on this journey and hope whatever decision people make is right for them and/or their child .
Linda Richards
January 9, 2016
Hello,
I’m very sorry you were subjected to such appalling treatment. Please do register a formal complaint.
Meantime, your comment that your ‘beautiful child is in no way broken nor do they need fixed’ reminded me of a programme called ‘Found’ and a similar comment by Joanne’s mum about her deaf daughter. You may like to watch this – see: http://www.bslzone.co.uk/watch/found/. (Yes, the editor of The Limping Chicken wrote and directed this programme and I declare an interest as a member of the BSLBT Board.).
Whether your child signs (like the contributors in that programme) or not, stick to what you believe is right and good. As the clinican in the BBC Alba programme said, once an operation has been done, it destroys ALL remaining residual hearing and this cannot be reversed. This is not said often enough. Further, the same programme says it does not work for everyone. Well, we saw that with Craig.
I know of someone from my Deaf Club from many years ago who was in hospital awaiting his implant operation and in the next bed, someone else was in to have theirs removed. I thought that was an unusual statistic but actually, I’ve met more and more who are have been ‘un-implanted’ (if that’s the correct term). There is also a video clip circulating in the Deaf world about the many failed cochlear implantees as well as the cases of those who have suffered neurological damage or died as a direct result of cochlear implantation.
Your anonymity is important and respected but please may we quote the content of your comment here as a response to further ‘twee’ videos or articles about the ‘miracle’ of such implants?
Best wishes to you and your family.
Mandy
January 9, 2016
Oh my god that is shocking! Whoever made that call should hang their head in shame…and be sacked. I think you deserve praise for making an informed decision and doing what is right for your child. The CI medical teams completely write off the opportunities children have through BSL, Deaf culture, etc etc. They are so blinkered in their views….it makes me so angry! You be proud of your decisions! x
pennybsl
January 8, 2016
Anon mother, you have our Deaf Right hearts behind you. Hugs and we thank you for sharing.
It is not about ‘against CIs’ as they do work with some – note the word, ‘some’ – children and adults.
It is about the ruthless, relentless mindset, the “oh no to lose hearing as I know it myself” mentality in the medical and some aspects of the educational profession which needs investigation urgently.
Evidence about cognitive and emotional development is still growing about the benefits of bilingualism and Deaf-friendly approaches, especially in the home and social life.
Parents and professionals caught up in this ‘war’, read this article, blog and comments; listen to us Deaf people and parents who learnt the hard way. Thank you.
Dc Evans-Neiderer
January 8, 2016
My husband is Deaf. I started dating him just before entering my Interpreting program. My dream was to become an interpreter. Two be a mechanism for fluid communication between two wonderful groups of people. I told my husband that I wanted to adopt Deaf children. I said that I feel he and I can develop a family of strong and proud Deaf children that are not afraid to take the world by storm. Some of my family argue that my husband and our future children receive cochlear implants. I and my husband have stood strong against this as we believe that our children will be able to achieve whatever they set their minds to if they have a strong home that encourages their self-respect and pride in who they are as individuals as well as having a strong sense of self within the Deaf world and the world at large. Our family will be quite unique as I am a bisexual and hearing male. My husband is a gay and Deaf male. And our children will have their own unique set of challenges coming from a foster home. BUT, with all of that uniqueness, our children will be more well rounded, be confident in who they are, and be raised in a very understanding and living home. Our family will stand on the values of being proud, being yourself, and never changing to appease another to felt their definition of “normal”.
Dc Evans-Neiderer
January 9, 2016
Ugh. Noticed so many typos. Sorry. Posted via mobile and my phone likes to be a butthead. Please correct my typos as you find them and forgive me for them. This phone and I are battling.
Gaye
January 9, 2016
Very true switch on is not what u see in the “feel good switch on” videos…I sho I led know I have an implant!
Hartmut
January 9, 2016
May the Deaf Force be with us all!
With thanks to pennybsl.
With apologies to Shakespeare, the hype around the CI is a Sound and Fury, Cignifying Intolerance.
Stay Deaf! Or in German Bleib taub!
Mandy
January 9, 2016
I watched this programme too and while it did show CIs are not always a magical moment at switch on, unlike Andy I couldn’t stop myself from screaming at the tv and would of thrown my remote if it was near me!! At all the things previous comments have mentioned…..jobs at risk if you cant hear machinery, seriously?? Remove your implant but ill carry on speaking to you….yes the list goes on, but one thing that I found completely shocking was how they tested the little boy to see how much he used his voice before they decided if he could have the implants….so if he was “too deaf” and used bsl they wouldn’t allow him to have them? Shouldn’t he be given the opportunity to improve his hearing of environmental sounds etc even if he chooses to not use his voice? Isn’t that his choice?
I also couldn’t help noticing it looked like NHS staff “interpreting” for his mum and not a qualified interpreter.
Natalya D
January 9, 2016
Great comments so far.
I notice no one has mentioned the assumptions initially made by professionals about the little boy Fraser who has learning difficulties alongside his acquired deafness – the original reluctance to offer him cochlea implants assuming they wouldn’t help him or he wouldn’t be “enough of a success” which makes me uncomfortable about the PRishness around CIs. As it was, his mum felt they were worth trying and seems to have been vindicated in this. I think there is an obsession with CIs having to make someone into a fully hearing person or be able to hear speech and use the phone. In reality I know many people who find just some environmental sounds are useful, or being able to perceive music helpful. Like hearing aids, how much they “aid” hearing is hugely variable and how much energy that takes from the individual varies hugely too.
While it had many moments of audism outlined in comments I do think alongside other resources is a useful programme for some things – medical staff DO talk to people without aids in and have limited or no sign – my audiology are brilliant but their receptionist is inaudible and has no facial expression – I make her use pen and paper if I have no working aid cos she doesn’t sign at all. People need to realise that every deaf, hard of hearing or deafened person is different. The majority of the people in the programme were deafened in their teens or later. I would like to have seen more coverage of the kind of speech therapy work people have to do, stuff like what Bill Mager and Andy yourself have written in the past here at LC. The Deaf Teens prog a few years ago also showed a bit about how people practised listening to sounds which I think is important to show. It’s hard work, luck, aptitude and other factors which make CIs work, not some 100% fully hearing magic!
Richard Turner
January 10, 2016
Great article Andy P and I enjoyed the programme and thought it was well balanced. CI is not for everyone but it does change lives and as someone who has lost my hearing in later life and now has a CI it’s met my expectations and above. I thought it was a fair reflection on cochlear implants. I think it’s about managing people’s expectations as I’m also not keen on viral switch-on clips and poor Daily Mail articles claiming that CI restores hearing or a “new ear”. I have to say also that in my experience you are fully aware that it will destroy all residual hearing, however a hearing aid was of no use so I had little to lose. Also I think Craig in the programme at the end was pleased with the end result. I think his expectations at the start were too high but over time it sedinitely improved his communication. I agree with Andy that it was very wrong for Mark the sign fitter to be at risk of losing his job if his CI didn’t work. That is ridiculous. I think deaf people can achieve anything they want if they receive the right support and put in the hard work and determination required.
Ali
January 10, 2016
I read your article, but have not seen the bbc program. My instincts tell me that the writer, as a child of deaf parents, has a somewhat biased view. For those not familiar with the deaf culture community (those who sign), they are known to aschew cochlear implants, as they are counter to and threatening to their culture. I have no issue with anyone who chooses not to.implant, but your article is lacking facts amd misleading. It is known that implants are much more successful in young childrean. So the fact that this program was built around a center that mainly implants adults it is not surprising that their success rates are not as high. Also we do not know the skill of the surgeon there. Success is highly impacted by that precision. Finally, the article opens with a woman complaining that it’s not like the videos, it takes years of therapy. This is true and is not hidden when you meet with an implant team. It is stated very clearly up front that years of therapy is required. Nothing this great comes without effort. If you followed many children at a respected implant program i am confident that you would see very high success rates with children who do the requisite therapy. Anyone who is reading this article amd deciding whether or not to.implant, especially a child, should do their research and not be swayed by this biased author who may be well intentioned, but I strongly believe has his own agenda.
Andy
January 10, 2016
Hello Ali and thanks for your comment. I’ve done some other articles on cochlear implants that you may be interested in?
http://limpingchicken.com/2014/09/03/speech-tips-cochlear/
http://limpingchicken.com/2014/07/24/cochlear-risks-7/
I also appeared with my son on Channel 5’s the Wright Stuff talking about them (He has had a cochlear implant since 2) http://www.actiononhearingloss.org.uk/community/transcripts/the-wright-stuff-6-september-2011.aspx
The article is a review of a programme, not a factsheet. Nothing I wrote is against cochlear implants. I’m pointing out the differences of what I think public perception of cochlear implants are versus what this programme shows … in a review. It’s not a wikipedia entry on cochlear implants.
I actually agree with the points you make in your comment .. like this one:
“Finally, the article opens with a woman complaining that it’s not like the videos, it takes years of therapy. This is true and is not hidden when you meet with an implant team. It is stated very clearly up front that years of therapy is required. Nothing this great comes without effort. If you followed many children at a respected implant program i am confident that you would see very high success rates with children who do the requisite therapy”
Well, I never said she was complaining. You made that up – but she’s a mother of a deaf son who is *cautioning* another mum not to expect miracles. She is reinforcing what implant specialists also say. Why is she doing that? Because she knows that’s what people think these days because of some viral videos. Its important to manage expectations.
I think that’s important too .. that’s why its the first thing in the article.
I even got some feedback from someone who worked in a cochlear implant centre rehabilitating children and doing speech therapy. She said “Excellent article giving a more balanced and realistic idea about what happens when cochlear implants are first activated.”
I think I was pretty balanced over all. I think maybe you’re the one who has read it with an agenda in mind.
Joanna Hutchins
April 25, 2016
Yikes. Am just seven days after initial implant. Upon reading the above comments am little apprehensive to say the least. However, I did not set out on this journey to make life easier I can honestly say. I have no hearing above 400 but acute hearing below. I have learned to live with it and enjoy what other things I do have. BUT watching my family and friends struggle each day trying to communicate with me caused me to take this Step If it doesn’t work I will be at peace knowing I tried to make their lives easier
Linda Richards
April 25, 2016
Dear Joanna,
I found your last sentence very sad. I wish there had been another way.
Such as learning other ways to communicate because a cochlear implant won’t give you the communication that your family and friends lack.
Hopefully, your family and friends will learn lip-reading strategies, sign language and have fun learning these to communicate with you.
Communication is two way.
Best of luck.
Hartmut
April 26, 2016
Joanna,
it is unjust to spend huge amount of public money to make their lives easier. You need to consider the probability of failure of your expectation. Unwillingness to adapt to your communicative needs is itself the problem. Your statement of having “no hearing ability above 400” does not make sense. Your audiologist or whoever told you so is an asshole.
Joanna Hutchins
April 27, 2016
Yikes. Its one thing to have an opinion but quite another to be rude. I have started on this journey and will continue with confidence in a decision well made. As to the 400 there is a chance I did not understand what the doctor actually said and therefore he is being unfairly judged! As to the taxpayers money. Hmm. I have paid taxes for fifty years, never used the health system and paid my way. I refuse to feel one speck of guilt for getting a return on my money😀😀. Joanna Hutchins