People who get a CI often comment on how it changes their life totally although sometimes not in the way they expected.
I lost my hearing when I was 5, because of meningitis. I had speech therapy all through my school years and for 7 years after graduation, when I was working in London.
Despite this, I have never been able to re-learn how to speak clearly, and strangers can’t understand me.
The first time I was fitted with a hearing aid that was powerful enough for me was when I was 15. The shock of hearing the toilet flush for the first time is still with me.
At the time I applied for a cochlear implant (CI), in 1998, I was a computer programmer with a large telecoms company. The job was very well paid but I didn’t really enjoy it. I had significant difficulties communicating with colleagues, this was mostly in writing or by email.
I was hoping that a CI could help with my career, plus my children were quite young and I wanted to have better communication with them.
Even getting to assessment stage for the CI wasn’t easy. It took 2 years before my local NHS Trust would agree to fund my assessment, and they told me that even if I did pass the assessment, there was no guarantee that they would agree to fund the CI operation.
The assessment process with the CI department took 6 months. I had the feeling that things weren’t going well because the audiologist’s face got longer and longer with each session. Any requests for feedback were met with hesitation. As we approached the end of the assessments, I felt more and more unsure that I would be passed as suitable for a CI. Because it seemed quite likely that the decision would be bad news, I asked my husband Chris to accompany me to the meeting.
The room was full of people; there were 5 staff present including the head of the CI department. He sat next to me and wrote me a note on a piece of A4. It was a long note and in it he explained fully and in detail that he was very sorry but his decision was that a CI would not give me any more hearing than I could already get through my powerful hearing aids.
He took quite a long time to write all this down and I could feel the tears trickling down my face and dripping onto my top. Someone handed me a tissue – and then another and another. Finally the meeting was over and we got out of the room. It was devastating. I felt as if I had been thrown on the scrap heap. There was no follow up or offer of support, the decision was final and irrecoverable.
Twelve years after that meeting, I took part in some research at the Ear Foundation in Nottingham, into deaf people who had been turned down for a CI, and found myself crying as I talked about the final meeting. I’ve no idea what the outcome of the research was, but still feel that the experience I had at the final meeting could have been better.
It was clear that the decision had been made, so there was absolutely no need to have had so many people in the room. I also felt that more information at an earlier stage of the assessment process would have helped me prepare for the fact that a CI might not be suitable for me. I understand that the technology is better now than in 2000, but there is absolutely no way I could ever go through all that again.
In the months after the decision, I felt more and more that I needed to make changes in my life so that I could move on. My hearing aids came off, and went into a drawer, never to be worn again. I didn’t miss them because the sounds had never helped with lipreading, or with vital things like crossing the road. I took voluntary redundancy from my employer, without much idea what to do next.
After this, I spent 2 years at home with my children. It was great because they were at the age where they and I could do lots of things together. People started asking me to teach deaf awareness. At the time, it was a fairly new thing and was becoming very popular because diversity was one of the buzz-words in the millennium, and lots of employers wanted to make sure their staff knew how to work with deaf people of all communication abilities.
I did most my training at Deafworks, where Laraine Callow was giving wonderful and inspirational courses on how to teach deaf awareness. I also did the CACDP Deaf Awareness training course and then moved on to college for a FE teachers’ qualification.
Teaching deaf awareness was fun. No group was the same, and they all asked such interesting questions. I always worked with two interpreters, who voiced-over for me and interpreted the questions that the learners asked into BSL.
After a while, the next step seemed obvious; I needed to learn BSL properly instead of using SSE. It has taken me 14 years to get to anywhere near fluency and it’s been a tough process, with a lot of slip-ups on the way. It has led to a whole new career. I have just gained my Level 6 qualification in BSL and have been teaching Levels 1-3 BSL for several years.
The strangest thing about becoming fluent in BSL is the effect it has had on my general communication. My lipreading is much better and people have told me it’s ‘excellent’, although of course it depends a lot on who is talking and whether I know what they are talking about. I used to find it hard to talk to people, thanks to so many years of not being able to make myself understood easily, but it’s easier now and I feel more confident.
It is strange how things turn out. If you’d told me 20 years ago that I would become a fluent BSL user who also teaches BSL, I’d have laughed at you. I really enjoy BSL poetry, humour and culture. It’s a whole new world.
Jill Hipson has been deaf since the age of 5. After an oral education, she changed to using sign language. She teaches BSL and deaf awareness at Hearing Dogs for Deaf People. She has two grown-up children, a hearing husband and a retired greyhound.
Christopher
February 15, 2017
Hi Jill, first I would to say how sorry I am about being turn down for CI! I am CI user and do relie on them and everything I do.
But since 4 year it been failing as got faulty inside and NHS won’t fund for new one, which I am stuck with it at the moment.
I do have to say way you going through right now is amazing and doing so well. I didn’t know lip reading is better without sound, i am bit useless with lip reading since CI as just used to sound etc.
I don’t used the BSL as I used to hear sound before while in school and lip reading more, but bit hopeless now.
You have been really amazing what you do with deaf support and learning new things, great one Jill
Christopher
Cathy
February 15, 2017
Well done Jill! Iam surprised you gave your hearing aids up though! I couldn’t give mine up as I feel more confident wearing them as they allow me to hear myself and others. Certainly feel safer hearing the traffic on the roads.
I lost a good friend many years ago who died because she never heard a motorbike roaring down the road at night. It did not have lights on either! She was killed by this biker, so that is why I wont be putting my hearing aids in a drawer!
You have done well to learn BSL although surprised it took you 14yrs. I learnt in deaf clubs and picked it up in about 1 year and that is 30yrs ago. I feel the best way to learn BSL is with deaf people on a weekly basis, much easier to pick up and more natural than in classes.
I have just taken possession of a new powerful hearing aid called Dynamo and its suited to those with profound hearing loss. So if you are interested in better hearing aids, Jill, try that one. I was the same as you, unsuitable for CI but hearing aids are improving all the time!
pennybsl
February 15, 2017
It is true that having BSL, friends who use BSL and accepting one’s deafness enhances social & emotional communication.
Hearing friends of my parents remarked how more confident in interacting with them after I ‘discovered & accepted my Deaf Identity’ in the mid-1970s. I was very oral still, using Signed Supported English at the time – as Jill said eloquently, it’s the inside of us that matters first. Developing BSL expanded neuro-structural areas in my brain in ways most medical professionals dealing with deaf people wouldn’t understand. To make such people understand, one has to use metaphors or narratives of gay people or people of colour to show parallels of innate identity.
CI or non-CI, the innate acceptance of a deaf person’s multi-faceted identity may not be visible, but it is significant, psychologically healthier with consequently better self-image and social participation.
Thanks, Limping Chicken, for sharing Jill’s story.
Natalya
February 15, 2017
Really interesting to hear your story Jill, although saddened to hear how badly the CI assessment process was handled.
It is also helpful to hear that it isn’t just me who finds improving my BSL difficult, well done for sticking at it, I feel more inspired to keep working on what works for me.
I found all my communication skills improved after I did BSL classes and spent time with deaf and sign language users. My mum even commented on it unprompted. BSL has helped me read and understand people better, improved my observation skills.
Lynda Sharp
February 15, 2017
Interesting read on Jill’s experience with the assessments. Really horrible and a big turn off for other potentials. I was fast tracked and literally whipped off to surgery in matter of weeks. All to do with available funds I suspect more than anything. After the switch on I was disappointed to have to tolerate the creaky sounds and to appreciate that digital sounds are inferior to our beloved analogues. I miss classic music, big bands and all orchestras. I can only enjoy one musical instrument at a time. Piano….guitar….saxophone and so on. I can only benefit with conversations with my children overseas on Skype when they ate not too busy. I say 50%50% to all queries. We still have a long way to go with advanced sound engineering’s. Hope Jill will now feel better in knowing that I am categorized with her as being very deaf for too long. I just wish the hearing world would give us deaf survivors the well deserved respect.
mjfahey
February 15, 2017
Lovely story, I’m so happy that it all came right for you Jill. I hope your story gets passed through to the people who need to understand how to handle assessments and meetings like yours… where a little bit of thought could have made it much easier for you. Your story is so inspiring for people of all levels of hearing loss to simply not give up and keep on keeping on. I am a oral, profoundly deaf Ci user and have been on my own journey being from birth. The CI is a brilliant device and I would not be without, but I wonder where you would have ended up if you HAD been suitable, perhaps not in such a happy position as you are now. Good luck for your future.
Hollie Mayhew
February 15, 2017
I really enjoyed reading this article! Well done Jill.
deaflinguist
February 15, 2017
Well done Jill, this is proof that as one door closes, another opens. And you pushed that door open yourself.
I think that this article should be recommended reading for CI teams everywhere. I had a much more positive experience through the process (though it was protracted for me as I was not a traditional candidate at the time) as I had feedback at each stage, and reasonable adjustments were made for me at various stages, for example when I had the MRI I had an angled mirror enabling me to see the outside world, so that I wouldn’t feel cut off and had some idea of how time was passing.
As deaf patients, there’s a wide cultural gap between ourselves and the medical profession: hearing patients often absorb information by osmosis that we have to seek out, especially if the rationale behind decisions or treatments is not clear.
I thought it was normal procedure for research studies to be shared on publication with those who have participated. Hopefully the Ear Foundation will now contact Jill and share the findings with her. It is always good to see how one’s contribution has panned out within the parameters of the study.
Kathleen
February 16, 2017
Hi Jill – I was very interested to read your article – I had a cochlear implant 25 years ago and went through strict tests before I was chosen to have one – I wrote a book “Something Better than Silence” which is available from me or from Amazon. My cochlear implant was very disappointing and not surprising why they will not now give cochlear implants to adults who are as deaf as I am – I did lose what little hearing I had when I had the operation. I was one of the first to have one when they came out in the U.K. so they did not know how much hearing I would get at the time so having said this I am not at all surprised you were refused one because you would probably gain very little benefit today. It is great for children as they have their whole lives to grow up with the cochlear implant and learn. I wish you well for the future and the remarkable achievement you have made with BSL.