Billy 2.0 – The Elephant in the Room

The Elephant in the Room by Banksy

It’s time we talked about the elephant in the room. I believe there are people out there who don’t agree with my decision to have a cochlear implant.

It’s been interesting to see people’s reactions when I tell them I’m having a bionic ear put in. The looks of mild disappointment, the tacit silences, noncommital shrugs, mutterings of ‘It’s your decision’.

That reaction is mostly from my Deaf friends.

I’ll address the elephant in the room again. A large majority of the Deaf community doesn’t approve of cochlear implants. They are a bad thing. They arouse strong emotions and strong opinions. To understand the reasons why, we need to go back to 1790.

In 1790, Alessandro Volta put a couple of metal rods in his ears and passed 50volts through them. As a result he heard a sound like ‘a thick boiling soup’. Experiments with electricity through ears continued, until the hearing aid became a more viable alternative.

Fastforward to the 1980s. Various people in the US and Australia are experimenting with electrode technology. At the same time, the Deaf communities in the USA and in Great Britain were arguably at their peak. Gallaudet University was becoming established in Washington, See Hear was starting on the BBC, and sign language and Deaf culture were starting to be recognised as a valuable and tangible entity politically and socially.

Then in 1982, the first patent for a cochlear implant was granted in 1982. In 1984, the FDA approved an Australian surgeon’s cochlear implant device. They allowed deaf people who could not benefit from hearing aids to get some sort of auditory stimulation.

The early cochlear implants required a lot of listening and speech therapy to use well. As a result, many surgeons and doctors preferred to emphasise learning speech and lipreading at the expense of sign language.

Deaf children born to hearing parents were often advised to have cochlear implants – with little information available to those parents of the alternatives of sign language, bilingualism, hearing aids and more. These children would be kept away from other Deaf children and from sign language, with the aim of full integration with hearing society.

It wasn’t until the 1990s that cochlear implants began to get traction in the mass media. Television news reports, newspapers and even documentaries heralded young children, adults and the elderly all being ‘cured’ of deafness, to great fanfare. This wasn’t true – cochlear implants back then weren’t that advanced – but it created a self perpetuating myth that cochlear implants were the ‘Final Solution’ to the problem of deafness.

This created fear in the Deaf community: that deafness was once again seen as a medical problem to be eradicated through technology, rather than a linguistic minority with its own language.

I remember once doing some filming in a hospital in Scotland, with its own cochlear implant unit. They decorated the corridors with passport photographs of every person they’d implanted. I remember walking down that corridor and seeing about 500 pictures of smiling children. I wondered how many of those children had been ‘successful’ – both in the medical sense, that they could hear well and partake of the hearing world; and also in the personal sense… were they happy with what they’d been given?

I know of one deaf couple, whose baby was identified as deaf. The parents were told by the consultant to consider implanting their baby as soon as possible. When the parents said no, the hospital kept emailing, sending letters and booking appointments to start the process of a cochlear implant for several months afterwards. And even now, every time their child is seen by a teacher of deaf or a speech and language therapist, they ask why the child isn’t implanted.

Cochlear implants may be becoming more widespread now, and people seem more clued up about their benefits and also their limitations. But still, many Deaf people still see cochlear implants as a symbol of oppression and control, continuing a sad tradition that goes all the way back to 1880, when a conference of Deaf Educators decided to favour oral education over sign language.

The rumours still persist too – that you can’t swim with a cochlear implant; that it has to be replaced every 5 years; that there’s a 20% failure rate; that the terrible side effects are concealed from the public; that they’re part of a conspiracy between private medical companies and the government to generate profit; that hospitals make parents sign a form to promise that they won’t use any sign language with their newly implanted children.

Whether those rumours are true, I don’t know. But I do know that I’ve been trying to persuade the hospital carrying out my implant to let me film the process, and interview the key people working with me. They’ve been somewhat reluctant to cooperate, resulting in a last minute restructuring of my planned documentary.

I suppose now that I’m having a cochlear implant you could say that I’m becoming part of an evil empire, oppressing the small band of Deaf rebels fighting to protect sign language. That’s not really the case.

I’m an adult who’s carried out the research, weighed up the options – and decided that a cochlear implant will benefit me in some way. But when it comes to making that decision for children, the picture becomes murkier. If my son started going deaf, would I consider a cochlear implant for him? I honestly don’t know. I think that would be a much more difficult decision. I know many deaf parents who’ve made that choice for their own deaf children, and I know they didn’t take the decision lightly.

So, back to that elephant in the room. What can I do or say to reassure deaf people that I’m not a bad person for wanting a cochlear implant? I don’t know. I’m pretty sure that I’m still going to be deaf afterwards. Less deaf, maybe, but still deaf. I’ll still lipread, I’ll still use a bit of sign, but life will hopefully be a bit easier.

At the end of the day I’m hoping it isn’t the cochlear implant itself that people are angry about, but what it represents. Trying to fix deaf people who don’t want to be fixed, whether through oral education, sterilising deaf women, making people wear hearing aids, banning sign language, genetically modifying gerbils, closing Deaf schools or cutting funding for sign language teaching.

I’m also sad that it’s easier for a deaf child to access tens of thousands of pounds worth of cochlear implant surgery, after care and training, but that same deaf child can no longer go to a deaf school or access specialist teaching as the Department for Education continues to cut funding.

Maybe cochlear implants really are evil after all.

Anyway – wish me luck tomorrow.

Further reading:

7 Replies to “Billy 2.0 – The Elephant in the Room”

  1. “Gentlemen, we can rebuild him. We have the technology. We have the capability to build the world’s first CI Superstar. William Mager will be that man. Better than he was before. Better, stronger, faster.”

  2. Thanks for sharing your blog. I am new to all of this as my daughter was born deaf this past March. I had no clue about Cochlear Implants and no clue on how to use sign except for the ABC’s. We researched and tried to figure out what the best decision for our family/daughter was. I was sort of shocked at how much negativity surrounded CI’s in the deaf community. I get it in a way. I understand the idea that nothing is wrong with you, that you were made exactly how you were supposed to be made, and I believe that 100% about my daughter. I just don’t get how someone can call you evil for choosing something you feel gives yourself/children tons of possibilities. If my kid needed glasses, she would get them, a wheelchair, she would get that too. The thing that bothers me the most is that in the end we are all PEOPLE/HUMANS. Why hate or judge others based on how they deal with the life they have. I don’t think the people who decide against CI’s are terrible people or idiots, so why not the same respect. (I guess that’s just life though. People hate and judge for even stupider things than this. This election is a good example of that)

  3. There’s still widespread ignorance about CIs in the Deaf community and there’s widespread ignorance about sign language among the medics. For something that’s meant to be a communication aid, it sure causes a lot of wires to get crossed. Both sides have their own myths, and it seems sometimes never the twain shall meet.

    I’m an adult and I was astonished to be asked by a GP at my practice whether I’d stopped signing at home. A: I don’t sign at home, my spouse and family are hearing; and B: I haven’t stopped signing with my Deaf friends. Why would I? I love being multimodal. I always was – and having a CI doesn’t stop me doing that, in fact it allows me to be more so than before.

    There’s an elephant in the room. Let it dance and galumph wherever it wishes.

  4. So you’re finally about to embark on your CI journey, one which I started myself about 4 months ago. It’s the best decision I’ve made for a long time. I did get some harsh responses at first, mainly from a few deaf friends who I’ve known for a long time, but that didn’t put me off at all as I knew it was the right choice for me. You’ve seen my audiogram 3 weeks after it was switched on – the before / after difference speaks for itself. I am still multimodal & always will be.

    I vividly remember the night before my operation as I spent a long time in the silence of my garden, reflecting back on my life as a profoundly deaf person so far – childhood, school life, time at university etc – and then on what the CI might enable me to hear & do in the future.

    It’s still very early days for me, but I still get astonished literally on a daily basis by the new things I can hear & how my hearing capabilities are slowly evolving – it’s a very noisy world out there as you’re about to find out soon 🙂

  5. Really interesting read. I’ve been a cochlear implant user since the age of five, and I’m 22 now. My parents are hearing and they have admitted to me over the years that it was one of the biggest decisions they’ve had to make. But I’m thankful that they took the risk, as I’m graduating Teesside Uni next week as a qualified journalist. Having a cochlear implant has definitely opened doors that would have otherwise been shut. It’ll be interesting to read your blog and hear your thoughts on life with a cochlear implant. It’ll provide a contrast to my experiences, since I’ve never been in a position to know life without an implant. Oh, and clocks will be the bane of your life.

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