I once thought that my own experience was different from that of most people who approach Hearing Link. They have usually lost their hearing as adults, whereas I lost a large part of mine at the age of five when I had measles – there were no vaccinations in those days. But I now realise that many of my experiences are common to all deafened people, so here is my hearing story so far and I hope some might find it useful.
Born in 1945 I was very fortunate to live in Cambridge where there was a lipreading teacher who had a class for young children. I attended those classes for many years and became an excellent lipreader – it is much easier to learn things as a child. My parents insisted I attended mainstream schools. There was no-one in their circles who used sign language and I suppose they wanted me to stay with them rather than have to go to a special boarding school.
I am glad they made that decision because I got by OK at school. I sat in the front row and did my best. It was hard at times and maybe I would have done better at a special school, but I learned to deal with life in the Hearing World from the start. A friend with a similar hearing loss went to Deaf School and had lots of support but a hard time when it came to going out into the working Hearing World where she received little support.
The first hearing aid I had was one of those huge devices with a big brown battery bag, black microphone and a long wire leading up to the ear piece and a solid ear mould. Not very discrete and along with the owl shaped NHS glasses and the big bow in my hair I struggled with self esteem. But I don’t remember being bullied much, thank goodness. Even at that early age I derived great support from knowing the other children in the lipreading class and the teacher who became a great friend and mentor to me.
It was not long before the small body worn Medresco hearing aid was released, first to children, and I was very pleased to have the smaller device. Aids became smaller and smaller and eventually I acquired behind the ear aids – that must have been in my 20s.
Phones, subtitles and minicoms
I could never understand the radio or use a telephone “properly”. Eventually I got a textphone – a Minicom – but you could not use them for a relaxed conversation – only for essentials. Subtitles began in the 60s – about two hours a week – and were a revelation – I had not been able to follow TV until then. These were the days before the Internet, emails and texting and it was hard to keep in touch with people except by post. When I left home I could not phone my mum and dad (and when my daughters went off to university they could not speak to me, which was hard). It was also hard to make friends because many people were just too difficult to understand.
Thoughts and feelings about my hearing loss
At 16 I passed six O’ Levels and wanted to train as a nurse but the local Matron said this was impossible with my level of hearing. With help from my mother’s contacts I got a job as a punched card operator, and became the star operator because I did not have the distraction of chatting as the other girls did; I was completely focussed on my work.
I did feel left out of that chat and particularly the spontaneous laughter but tried to accept it and joined in when I could. Sometimes I would get very down and feel very isolated in a group. I did not feel able to talk to my parents about this, or later to my husband, because I thought it would upset them and there was nothing they could do about it. So, when I needed to, I wrote things down in an exercise book just to get it off my chest.
I had a look at that book, which nobody else has ever seen, and here are some of the things I wrote whilst confiding in the book and trying to help myself:
- I feel like an alien in my own land.
- I cannot be the person I was born to be.
- People talk and laugh around me and totally ignore me, or so it seems. Can they not see that together as a unit they deprive me of my place amongst them and make me feel a misfit?
- I might ask someone what is the topic, but if I misunderstand their response, the look of embarrassment on their face as, perhaps, the attention of others is drawn to us, precludes another attempt to find out, so I bluff and try to look as if I understood.
- When people speak in company they expect to be understood. They want to say what they have to say and, as long as someone reacts, they are satisfied and both speaker and listener have the satisfaction of mutual communication. The tragedy of deafness is that when there is more than one listener, the speaker is satisfied by any response, and no-one notices that the deafened person never responds and becomes more and more isolated. Having to repeat for a deafened person becomes, for some people, a tedious chore. The deafened person knows this is an irritating situation and invariably does not pursue it – the words were probably trivial anyway, but the effect is a building up of isolation and eventually an inability to communicate freely. I think that it is the loss of free, unstressed communication and especially humour which is the greatest loss of deafness.
- Blessed are they who can see what is happening, take part themselves, but still keep you in the picture and not be embarrassed by you – even to the extent that you can make a contribution and feel that you belong. That is the problem with many people – they fear that you will embarrass them – can they really be so lacking in confidence?
Those thoughts were written down in times of frustration but generally life was good and happy. My older sister and a friend learned shorthand and wrote out the lyrics of pop songs for me so I could to a certain extent keep up with the 1960s pop scene.
I had tinnitus which usually did not bother me too much but occasionally it was awful, sounding like several chords on an organ being played together with no respite, and I could hear nothing through it. I got my husband to ‘listen to my head’ and could not believe that he could not hear it.
At work I graduated up through the various data processing machines until I was operating the IBM computer and was asked if I wished to train as a computer programmer. This I did – I had to pass A’ Level Pure Maths first! One of the other trainees later became my husband. He has always been a huge support to me and has the patience of a saint.
Data Processing turned out to be an ideal career because I could usually work on my own and just deal with the person I was writing programs for. Departmental meetings were difficult but I enlisted help from colleagues where possible and I had a successful career.
Bringing up my girls
I had eight years out when we had our two daughters. I insisted that my squeamish husband attend the births because I could not lipread the instructions of medical staff with their masks on! Our daughters grew up into wonderful, confident women with good careers themselves. My worries that my deafness would be detrimental to their speech and development were unfounded. My eldest was helping me on the phone when she was two and they looked after me whilst crossing the road! We all learned the sign alphabet and when necessary they could prompt me with that.
I have written a number of articles about being deafened and one which brought a large response was about my feelings on an evening’s carol singing around the homes of house bound church members. Here is an excerpt:
“On arrival at church I greeted those already waiting and we stood about in the hall sorting out song sheets and lanterns. Others arrived, more greetings and pleasantries were exchanged and I began to feel isolated. There was chatter and laughter and I could never catch the subjects and comments. Difficult to ask people – the subject is changing constantly and mostly just unimportant chatter – but it is this that holds people together and builds up the feeling of camaraderie.
“We set out and walked from house to house and flat to flat. The lighting was poor making lip reading virtually impossible, especially as one had to watch the way in the gloom. I spoke occasionally to people nearby but we were grouping and re-grouping all the time as the path narrowed and widened and I was finding myself often walking alone and could hear the sound of chat and laughter in front and behind. The others could listen in to the chat in front and behind, pass a comment and fall in with that group to continue the chat. In the light of the houses where we sang someone would point out the carol we were to sing next and I could have a quick word with someone beside me, but the demoralising effect of the evening built up and made me very depressed by the time we arrived back at our cars and I drove home.
“I sat myself down for a good talking to! Was I letting myself become a victim? Can one be a victim without an aggressor? The people I was with were all very nice people most of whom I had met before, out as I was for a happy evening bringing good cheer to those less fortunate. They were ordinary well-meaning people who saw nothing amiss, my situation and feelings were invisible and they were quite unaware that inside I was crying out to share in their companionship. What could I do? Stay at home and avoid any potentially isolating situation? Become a recluse to protect my sanity? I am a naturally sociable person – so why couldn’t I find a way to be included? Everyone has their own problems, perhaps many of those out singing were glad to leave their problems at home and enjoy an evening’s respite and maybe my own difficulties were small by comparison to theirs.
“The next night I determined to be more positive and the evening wound up with mince pies, coffee and punch in a well-lit hall where I could, and did, make a determined effort to have a chat with several people, felt much better for it and went home a thousand times happier than the night before.”
As a naturally gregarious person I have always found it hard to miss out on the easy laughter and camaraderie that hearing people enjoy, and it is easy to feel deprived and rejected. But they are usually oblivious of the fact that we are left out. With one person I could be in control of the situation whereas with two or more I was not in control.
Peer support amongst deafened people is vital, I think, and I helped start a hard of hearing club in Cambridge when I was 16 and another in Stevenage in 1984. I had great satisfaction from those, and was always an officer or committee member. I made a little flag and during committee meetings insisted that no-one spoke unless the flag was in front of them so that I (and others) knew who was speaking, because I could not and still cannot tell where sound is coming from.
Whilst in Hertfordshire I helped organise many Deafness Awareness Days and seminars on various subjects such as Subtitles for TV. I chaired the Herts League of the Hard of Hearing and helped to found the Hertfordshire Hearing Advisory Service and was a volunteer Advisor for Hearing Concern for many years. For the last two organisations I visited and helped deafened people with their hearing aids and anything they wanted to discuss about their deafness. Later I became one of the first Outreach Support Volunteers for the Link Centre which later merged with Hearing Concern to become Hearing Link. I have always tried to keep up to date with, and benefit from, support organisations and technical aids.
As a volunteer for Hearing Link I have had many opportunities to contribute and to assist on programmes such as Intensive Rehabilitation Programmes and, more recently, Link Ups. Since 1999 I have been a Community Support Volunteer which I enjoy very much as I can share my experiences with those I am asked to contact personally or by email or post.
My cochlear implant
I decided to be assessed for a cochlear implant and had the operation in 2004. The implant has made life so much easier. I can use a normal telephone now and do not depend upon lipreading any more. I still need subtitles for television and only go to see films when captioned. I also enjoy captioned theatre shows.
Communication generally is no longer a stressful experience. Once upon a time I occasionally felt physically sick with the sheer effort of speaking to certain people for a long time – that never happens now.
On the emotional day of switch-on I could understand a lot of what my husband said in the car on our way home without looking at him and I spoke to my daughters on the phone for the first time – not perfect but it was amazing how much I could understand. My younger daughter was married soon after my implant was switched on. Now I had the confidence to talk to anyone and it was wonderful.
Gone are the days when I sized up new people before speaking to them to decide whether they could deal with communication difficulties. Tinnitus has all but disappeared except for sometimes at night when I remove my processor and a musical selection starts up in my head and will not go away.
We still have the occasional ‘interesting’ conversation, such as when I called out to my husband, “Are you ready for pudding?” and thought he replied, “Do you want some water?” to which I replied, “No thanks, I’ll have peppermint tea afterwards.” He laughed – he had asked, “Do you want a quarter [of the pudding]?”
Although my cochlear implant has made life very much easier, I am still a hard of hearing person. One of the loneliest of places can be in a group. I am a social person but often it is a trade-off whether I attend a group for the social aspect or for the activity, because I can’t usually have both unless others consciously include me.
Very often others just don’t notice and you don’t want to make an issue of it, after all you are there mainly for the activity, so you miss out on the camaraderie. I often find this hard to deal with. It’s not just in groups that I go to like Mah-jong and painting, it’s also outside activities like tennis and walking.
To wind up I would say that my philosophy has been to get involved as much as possible, keep up to date and to try to stay positive.
Webpage published: 2018
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