As some of you may have read, I went to the audiologist for a routine checkup and ended up asking many, many questions. Because I asked, I ended up hearing some surprising stuff. Most of the revelations were detailed in last month’s blog.
But there is one little bit of information that I almost forgot about, despite it’s revealing nature. I’ve spent the last few months immersing myself amongst the deaf community on Twitter, reading articles, blogs and features from different people. I’ve come across some excellent work, particularly from this site – Limping Chicken. (to see my writing for the site click here).
As I was leaving the office, I asked the two audiologists in the room whether they’d heard of Limping Chicken and other such sites. The answer was no. They’d never heard of it. They asked about the curious name. Many of you will know how the term came about (If you don’t, click here for an explanation). I asked them if they’d seen the documentary that launched the meme. Again, the answer was no.
That’s very revealing. I’ve always had contact with audiologists over my life, constantly checking and fixing my cochlear implant. I’ve never quite realised that all the support I’ve had from them were purely technical. They’re scientists after all. They don’t bother themselves, it seems, with how CI users are coping with the world. Apart from a few pleasantries, my checkup was exactly that.
The questions they asked were pretty much as follows:
- Have you had any problems with the implant since we last saw you?
- Do you need any supplies or anything replacing?
- We’re going to run some tests now, if that’s ok?
- Is there anything else you need to tell us?
That’s it. That was pretty much the course of the conversation aside from pleasantries. It occurs to me that they probably don’t know very much about my life and how I coped with my deafness, And I have to wonder, is that true for every patient they have?
All my life, doctors and audiologists have been perfectly willing to offer technical advice and solve any problems with my equipment. But they don’t tell you how to cope with life with a cochlear implant.
It’s like navigating a jungle. Hearing people are well equipped. They’d have a machete, a tent and a compass at the very least. CI users would only have the clothes on their back. We aren’t as well equipped to making our way through the trees and the obstacles we face along the way.
I got lucky. In my early years at secondary school, I met Janet Rogerson. Mrs R, as I knew her then. Janet was a sensory support teacher, employed by Durham County Council to aid deaf children in local schools across the county.
A CI user’s survival guide by this fella would be very useful.
Janet supported me by ensuring that my equipment ran smoothly, and made sure that teachers understood my circumstances. But she also lent me emotional support through some difficult times and became a good friend of mine. Unlike some horror stories I’ve heard over the past few months, Janet kept my parents fully informed of my progress.
This made a world of difference to my school life and my academic performance. To such an extent that I still keep in touch with Janet now even though I haven’t been at school for nearly five years now.
With reports of cuts being imposed by the coalition government, it’s concerning how much support will disappear for deaf children, making an already precarious situation even worse (this article highlights the appalling situation with GCSE results). I cannot recommend Teachers of the Deaf highly enough and they are essential if deaf children are to succeed in school and more importantly, in life.
It’s already trial and error for most people, navigating your way through the pitfalls of school, college and university. But it’s even more so for deaf children. And it shouldn’t be the case. Why should the future of deaf children be left up to chance? I was lucky, but not everyone will be.
There should be some sort of guide for CI users. A Survivor’s Guide if you will. Cochlear Implants for Dummies.
Mmm. That’s an idea, maybe I’ll start cracking with writing one!
This article was first published on Callum’s blog here: http://walkthedivide.wordpress.com/
Callum Fox is walking the divide between the hearing and deaf worlds. Profoundly deaf since birth and CI user. In his spare time he balances being 22 years old, being a football fanatic and trying to make it as a writer, journalist and human being. Follow him on Twitter as @WalkTheDivide
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Robert Mandara
March 11, 2013
Fully agree with you! Make that a survival guide for hearing aid users too though!
Callum Fox (@WalkTheDivide)
March 11, 2013
Haha! Thanks, I’ll keep that in mind when I get round to writing it!
lordeldrick
March 11, 2013
I have to agree that Audiologists are pretty much scientific in their approach when it comes to fine tuning equipment whether Hearing Aids or CI Processors. I found that engaging them in conversation even learning the name of the Audiologist tends to help and makes the sessions friendly.
Callum Fox (@WalkTheDivide)
March 11, 2013
It’s not really a question of friendliness. It’s more the fact that they don’t (in my opinion) make themselves aware of the social aspects of being deaf. They’re technicians first and foremost. I think audiology could improve their service by being able to at least being aware of helpful sites such as this one and informing people rather than leaving it to themselves to figure it out as I did.
barakta
March 11, 2013
I nearly fell over in shock when my new audiologist asked me if I ever managed auditory overload by turning my hearing aids off. Not only that but she didn’t judge me negatively for it, but recognised it as a valid option for me if I was happy with it, which I am. She worked with some deaf/HOH people and seemed to have a better idea of the every day impact of a hearing impairment and how tiring it could be and managing that being vital for individuals.
Prior to that I’d had audiologists who were either neutral in that they didn’t have an opinion of sorts and never asked about stuff or were extremely oralist in approach with a “turning hearing aids off is BAAAD” and “Sign language is evil” approach. These new ones seemed to be more qualified and accustomed to young(ish) people like myself with complex hearing impairments which we’ve had since birth/childhood who are much more variable in our communication choices. No two deaf/HOH people are the same and that is OK.
I had come across hearing therapists previously and they were like the new audiologists but you had to ask to see them and there’s just not enough of them. Like Teachers of the Deaf there aren’t enough resources going to audiology as they’re seen as a safe-ish department to cut money from in the NHS. I believe there was an AoHL study which said 40%+ of audiology departments expect some cuts despite their “patient group” growing rapidly and the demands of rapidly changing technology taking time to follow.
We should be challenging cuts to audiology as well, for as much as we young folk need guidance I think the older folk who lose their hearing are in many ways much much worse off and need much more time, patience, kindness and repetition of the support around managing their changed hearing. I always advise people who’ve lost hearing to try and find a lipreading class as many of those end up providing the kind of every day “manualised” support that those people need and there is naturally a level of peer-support which many find helpful.
Good luck with your manual! I am sure many of us would love to help out and contribute if that’s what you’re after as experiences with CIs probably vary as much as for those of us with hearing aids or those who use non-auditory communications methods. Maybe we need a set of manuals!
maryh
March 11, 2013
I was put in touch with a Hearing Therapist whomI go to see every time I go for a check up. which is every year. She talks about the non technical side of Cochlear Implants and asks how I’m coping and if she can give any help or advice. It may be worth asking at other hospitals whether they provide the same service.
Callum Fox (@WalkTheDivide)
March 11, 2013
Unfortunately, I think that proves my point. At no point in my life was I ever put in touch with a Hearing Therapist by anyone associated with audiology. Wishful thinking I know but these services should be a lot more closely integrated.
iheartsubtitles
March 11, 2013
I think this is a really important point. I coped as a kid and had very supportive hearing parents who learnt as they went along at the same time I did as to the non technical details of dealing with hearing loss and supporting the emotional side in the same way with they helped me with all the things you have to cope with in growing up. Dealing with hearing loss is probably even more important for those who have degenerative hearing loss through age, illness or accident. Having to adjust is surely really tough emotionally. I was born like it, don’t know the difference. I think that is easier to cope with than the latter whether its hearing aids or CI’s