So, another cochlear implant (CI) switch on has gone viral; reaching widespread coverage not just on the internet forums but across the televised news and papers.
I say ‘another’, because this is by no means the first time such a video has captured the imagination of the mainstream media. One seems to capture the public imagination every so often, despite the fact there are literally hundreds floating around on YouTube and similar sites.
It seems to be the ‘thing to do’ these days; film your switch-on session and upload it to the internet. This is, of course, every individual’s right, and I applaud people having the confidence to share such an intimate moment with the world, so that world might learn to be a bit more open-minded. It is brilliant to celebrate positive things, and, for many, many people, CIs are an amazingly positive thing.
But I’m not sure about the message it sends out about deafness, and what CIs actually mean to a deaf person.
For example, this most recent video, is being widely reported in the media as the first time the patient hears anything. EVER. But moments after switch-on takes place, she can understand the days of the week being read to her, knows she is speaking with a Geordie accent and tells the audiologist that the sounds seem ‘too high’… Hang on, wait… Geordie accent? This is the first time she has ever heard and she can not only speak, but with a recognisable accent? That’s not a cochlear implant, that’s a miracle.
Which is exactly my concern; this kind of fantastical reporting is doing nothing to help anyone, deaf or hearing, understand the realities of choosing to have and then living with a cochlear implant.
Now, I am not in any way saying the lady in the video is lying, pretending, falsifying. I feel nothing but empathy for her situation, happiness that she is getting such a brilliant benefit and respect for the fact she has been brave enough to share her journey.
I am just sceptical, and concerned, by the way the media have seized upon the story and seem to be reporting it in increasingly sensationalised ways. Very few reports make any reference to qualifying exactly how long it has been since the lady has heard; they just declare it is the FIRST TIME. EVER.
They are, basically, implying she NEVER had ANY hearing AT ALL, but is now RESTORED to humanity and CURED by the magic surgeons and audiologists.
I have made my views on CIs being offered as a ‘cure’ to ‘fix deaf people’ very clear before, and very publicly. I just don’t appreciate anyone, with the current technology and medicine available, saying they will ‘cure’ a ‘hearing impairment.’
If someone with hearing loss chooses to use a device to help them regain some access to sound, it doesn’t matter what their choice is; hearing aid, CI, BAHA… They are still a person who is deaf. It hasn’t gone away; they’ve just found some equipment that gives them something they didn’t have before. (Incidentally, it also doesn’t take away anything of who they were and are.)
When these switch-on videos become viral in the mainstream, nobody questions what they see. A video of a more usual switch-on session, unless it features a particularly cute baby hearing mummy for the first time, never hits the big time. This is because they generally aren’t such great viewing.
Although often emotionally charged, the instant benefit of having a cochlear implant fitted, is, for the majority of users, not that astounding. It’s either a return to a slightly different tone of hearing they accessed before, or a completely new and random sense of sound, which takes the brain a long time to process and begin to understand.
These are the commonplace videos; the beginning of a long and often difficult journey of auditory rehabilitation. The actual instant of switch-on is nothing compared to the ongoing experiences the person has ahead of them; both good and bad. But nobody wants to put those on BBC News or the front page of the papers, because they’re boring. They’re not miraculous stories; they’re just people going through things in their lives.
And that’s where the media let us down. Nobody questions if the viral video is a true representation of the whole CI community; they just assume everybody gets the same instant benefit. Which is very dangerous, and saddening, in so many ways.
We aren’t all miracles because we give our deafness over to medical science and hope for the best. We aren’t all idiots and selfish if we don’t. We’re all just… people going through things in our lives.
If we’re going to be celebrated for things, it’s a shame we never seem to get celebrated for that.
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. She tweets as @ehowlett
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bozothewondernerd
April 2, 2014
Bravo, Emily!
Andy, not him, me.
April 2, 2014
No, I really feel that we are overthinking this one. I do appreciate that it gives a less than accurate impression of deafness but I would point out that other aspects of Deaf life are exactly the same. The hearing world doesn’t understand us. We don’t help either, by coming up with all sorts of Deaf oriented points of view which the public simply do not understand.
Some of the confusion about this story has been caused by lazy reporting. The original story that I read explained that the lady had been born with progressive deafness. So obviously there was some hearing there initially but like mine it has tailed off to practically nothing.
Unfortunately the significance of pre-lingual deafness was lost on the hotshot reporters who came to the story later, I suspect many of them simply hacked it about (now you know where the term comes from!) and passed it on to the print dept. This is careless, lazy journalism and I am afraid it is quite common these days.
So this is the real power of the Press. They can print distorted “feelgood” stories in order to sex up the news. What can we do about it? Well for one thing we should make sure that absolute accuracy in reporting Deaf issues is maintained.
For example in the story above it would have been a good chance for those who represent us to get after the Press and say, “Now look here, this is the TRUE fact….”
But they didn’t…. did they?
Robert Mandara
April 2, 2014
What a brilliant article you’ve produced here Emily! I fully agree with your every word. Let’s hope that this will be picked up and discussed by the media to partially balance their massive misreporting.
I’m currently between stations; implanted and waiting for activation at the end of the month. How should I interpret the video and others like it? What are the chances that my activation will be so emotionally uplifting? How devastated will I feel when it most probably isn’t? For people getting implanted, it would be more helpful to see the worst case activation videos besides the “Wow!” ones, in order to keep expectations realistic.
Should I video my own activation? I honestly don’t know what to expect. It might be “Wow!”, it might be “Oh no! What have I done!” or, more likely, it will just be “OK, so this is the beast I have to work with from here on.”.
Catherine
April 2, 2014
Well said.
Deafnotdaft
April 2, 2014
Of course Emily and Andy are right. Some basic mistakes were made by the media in their coverage. By the way, Jeremy Vine referred to a “cochlear transplant”.
But I still think we’ve come out ahead. Deaf issues have been give an airing, which is a pretty rare occurrence. Yes, some of it was downright misleading but I’m not sure that really matters within the overall context.
The main point is that the hearing (and deaf!) public have been made more aware of cochlear implant technology and the sheer joy it can bring to its deaf recipients.
Let’s not get too upset about the detail.
Natalya Dell
April 2, 2014
Robert, unless you’re pretty, white, probably female you won’t go viral even if you have a ‘mega’ reaction – at a guess… (Sorry I can’t get my comments to thread).
Good luck though Robert, I hope your switch on goes well and that you get what you hope and want from your CI.
Emily – thank you for this great article. I think a lot of it feeds into cultural attitudes around disability. As a society we want palatable disabled people, the nice, pretty, braaave, inspiraaational ones – we don’t want people who have complex to understand impairments, who don’t sound or look nice but we do want them to look and sound disabled enough that we can know they’re “not normal” etc.
I am happy for the latest lady, as I am for anyone who gets what they want or luckily much more than they expected but we do need the real world to understand that hearing aids, BAHAs, CIs etc work to varying degrees for different people and it doesn’t abdicate people of their need to be deaf aware and inclusive which makes so much of a difference regardless of what communication choices deaf people choose to use.
Robert Mandara
April 2, 2014
Natalya, 🙂 Great! Now I’m not only wondering whether to video myself but also starting to worry about what to wear and personal grooming. 🙂 I’m ugly, white, male and unlikely to have the “mega” moment – I’m doomed….!!!
Caden
April 2, 2014
My own “switch on” was uneventful except for me being amazed that plastic bags made noise and that keyboard typing was annoying. I was born HOH, did voice and speech therapy for years and was fully oral and signing. So to say it was the first time I had heard those things would be true. First time hearing ever? not so much. These CI videos annoy me to no end. I do not consider mine a ‘miracle’ or that I am ‘cured’ or ‘fixed’. I wasnt broken to start with, I just decided to get it because I wanted it and my hearing was too bad for a hearing aid to do anything but scream at me. Am I still Deaf? Absolutely and no technology will change that. I am one battery failure away from hearing nothing again so its not a fix. Its a machine. Should every deaf or HOH person get one? No, its your own choice. Do I take mine off and ignore the “hearies” ALL THE TIME! Thats my favorite feature. 🙂 Great post I am glad someone finally said what a lot of us think. For the record my own “accent” is a Southern US drawl with a German accent added in. One speech therapist was from Tennessee, the German side, no clue where that came from 🙂 Makes for good conversation.
Tim Cole
April 2, 2014
I find this exchange interesting. I never trust the media. I always question. Being hearing or Deaf should not change this.
kim forrest
April 2, 2014
Caden- “Do I take mine off and ignore the “hearies” ALL THE TIME! Thats my favorite feature”..brilliant, made me smile haha! I’ve heard that often from Deaf people, I’m a CSW/ trainee interpreter and currently studying my level 6. I just loved your comment.
sammmymack
April 2, 2014
One detail everyone in the mainstream media seems to have overlooked is the context of this lady’s elation. She is registered blind and has Usher so presumably was looking for alternative means of communication to visual ones (sign, lipreading and subtitles etc.)
Nuptse
April 3, 2014
I think this is a very important point that should not be forgotten. For this lady her implant will make a tremendous difference – we are all unique and have different circumstances.Of course the bad reporting is frustrating but let’s celebrate the story for what it is in it’s full context. A lady with Usher who is registered blind, profoundly deaf and who is now able to reconnect with the language skills she developed as a child. This has the potential to provide her with better communication than she has had for a very, very long time even if it is far from perfect. Surely there is something very special to celebrate in this?
bettyhoven
April 3, 2014
Emily, I like what you’ve written here. I wrote a similar blog about these activation videos last year in case you’d like to read it: http://bettyhoven.wordpress.com/2012/06/09/my-problems-with-cochlear-implant-activation-videos/
Katie
April 3, 2014
Just like not a universal experience for a couple to save a life with a mattress they’re moving…..it was a compelling story that warms the heart. Same with this story. News stories highlight the unusual otherwise it isn’t news.
sarbear1995
April 3, 2014
How can I share my thoughts about this? I recently got a CI and want to add onto what you said.
donaldo of the wasatch
April 3, 2014
Emily is 2 generations behind me. I am 63 years of age, and have only know severe to profound deafness through my entire life. On my 4th birthday I was fitted with bilateral hearing aids, against all of the reigning experts medically, educationally and from the ranking audiologists. I prospered and I thrived as a Solitary in a mainstream world. I suspect our miracle lady did wear hearing aids as her hearing slid downward from the likely realm of moderate to profound losses and received extensive speech therapy. That would fit the Usher Type 2 scenario. My speech is mildly deafened to some people and most would say it is excellent and even superb. My vocabulary is top 10% in America and has been since middle school. Yet, as Emily says, I am still DEAF! I still struggle in many situations. I still have some typical deaf behavioral mannerisms. I wore bilateral hearing aids until 1988 when the left hear succumb totally to neuralgia. In 2012 and 2014 I was fitted with CI’s on, first the left, then the right side. For me a total godsend. I am getting back to hearing on phones and the emerging bluetooth and steady old (but static) FM work well for me. I still watch the telly with CC on. Love it! I never took up signing for one reason – I knew no other signers. My social circle was not the deafned 1% of society. My circle was the other 99% and I am extremely grateful to have had that exposure. For me it is more dead than Latin. I also believe that the reactions of the Deaf Culture to medical and technological solutions has been very bigoted. The people who have no personal or social frame of reference to tell anyone about the difference between deafness and hearing are lecturing and hectoring the media and world that the cloistered monasteries of deafness are better and equally suitable. I am not sorry to say this, but neither the statistics accumulated nor the research conducted sustains that the choices between hearing and deafened existence is equal. It is not about choice, but about responsibility. What is the most responsible choice with the most opportunities that you can pursue? So I agree that our medical/technological marvel is likely not all that the media portrayed. But, the counter subculture of the silenced cannot speak for humandom beyond deafdom. Only those who have successful plied both sides can attest to that. I am one. It took lots of initiative and efforts and I am not finished with the story line. But, a silenced cloistered monastery is not part of my story booking. Signing is fine by me, if they attain a full written and read language capability at the conclusion of their pre-colloegiate adventures. No more high school diplomas for individuals with a third grade capability. Total literacy must be a standard for all, with no exemptions for the deaf – barring secondary cognitive issues.
Jill
April 3, 2014
Dear ‘Donaldo of the wasatch’ I sincerely hope that one day you will achieve your dream of total literacy. Probably only then will you understand the previous comments.
Loulou
April 8, 2014
You have written what everyone else, who knows anything about CI’s, has been saying since the ‘miracle’ video. My daughter is bi-lateral and it has taken 10 years of hard work for her to have a level of speech where I understand about 60% of what she says. We are very reliant on BSL especually when her processors don’t work (which is often). She is and always will be a deaf person who used processors. And we celebrate the fact that she is deaf – we don’t want to pretend she is hearing. Rant over x