Jill Hipson: How being turned down for a cochlear implant changed my life

Posted on February 15, 2017

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.

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