As part of Deaf Awareness Week we are sharing this story with you from one of the members of the Civil Service Hearing Network. It truly hits the mark and is well worth the read. It epitomises what Deaf Awareness Week is all about, highlighting the problems faced by the deaf and hard of hearing community every day of their life. Mike, thank you so much for sharing your story.
The Civil Service Hearing Network is here to help and support all our people across the Civil Service whether they have a hearing disability, care for someone with a hearing disability or just have an interest.
If you would like to join the network, please get in touch with Simon Skerritt. He would love to hear from you.
Mike's Story
I am 50 plus years of age. I live in Redditch. I am married to Joan and she has 2 daughters – Vicky and Emily. We face all the thrills and problems that parents of teenagers have. We live in the same fast paced society as you. We have wider family and work commitments, the kids get everything they sulk for, I give out about work, complain about the weather, make mistakes and have likes and dislikes.
In short, I am fairly normal with good and bad points.
However one thing is different. I have a hearing disability. It was discovered when I was 6 years old when a teacher realised I was not naughty I just did not hear the bell at the end of playtime. It has had an enormous impact on my life.
I write this account attempting to explain what it is like to be severely deaf, hopefully conveying what it feels like and giving you an understanding of the practical day to day issues and emotional/psychological turmoil that severely hard of hearing people face. I cannot emphasise enough how cut off a person with a hearing problem can be.
As a married person the problem is not mine alone. Being deaf affects your partner in a huge way. Thank you, Joan, for all your help and support now and over the years.
Jack Ashley, a famous deaf member of parliament, said: "Deafness is the end of radio, the emptiness of television, the difficulty of small talk, the absence of conversational nuances and the lack of company. These are things that mark the mind. Deafness separates humans from humankind."
Things have moved on technically in the last 30 years but his comments still apply. I may give the impression I am on top of things. I'm not! It is easy to fool people and easy to give advice you do not always follow yourself.
What does a severe hearing loss feel like?
Two different mornings:
You are awoken early on a Monday morning by a stupid alarm clock; you curse the wind and rain that kept you awake during the night. As you wake the kids, one fakes a cough and pleads not having to go to school. Some DJ is on the radio talking about footballers crazy earnings and playing songs that I can hear the lyrics to. Meanwhile the phone rings it’s your friend saying he cannot make the footie tonight! The noise from the washing machine makes working in a factory seem like paradise. You escape to the bus. While pretending to read the paper you listen to Jill's account of what Jack got up to on Friday night and Simon’s effort to comfort her by saying it was not as bad as Brian's drinking. Joe and Gemma are cuddled up whispering but not quietly enough. Everyone knows she is pregnant. Except her mother!
There is a collective groan as the driver announces the bus has broken down. You ring work to let them know you'll be late. Aren't mobiles great? On the back up bus you yap to Mary who is always humming to herself - you don't get a word in sideways as she raves on about everything from politics to sport and Gary Barlow to Nicole Kidman.
When you eventually get to work you exchange weekend gossip with the gang over coffee. You live in a hearing world, never once did you think you were hearing. (This account is my imagination and backed up by my hearing friends)
Next day you get a poke in the side to get you up. It is a quiet dull morning.
"@#45^ lat 29?3" - What's that you say? - "I %^?@^ &*)' £$" - Say it again.
"£$ GH &^* nie" What? - "I will be late tonight" - You said that last night (annoyingly).
"Mum, Where &*(£!(.. .shoes," - "Dad k%^&2 ......." - Hold on everyone, one at a time.
What did you say Vicky? - "It doesn't matter...",
"Put on your hearing Aid."
"Bye Mike," - Where are you going? - "I just told you."
Will you ring Mac for me before you go? - "Ah Dad I HAVE TO GO TO SCHOOL."
"Are you ready?" - Ready for what? - "You promised me a lift."
Hello Mrs Kelly ""*!£ Lov"& "$£% Yesterday" Oh - yes it was a lovely day. - "!£"$ $%^&* Match" - er, United were great. Bye must rush
A different day, a different world, a different life!
Sometimes you hear, sometimes you don't, you hear a little and guess the rest, often wrongly; you are oblivious at times, unaware somebody is talking to you. You mishear questions and answer questions you were not asked. You interrupt conversations; say the wrong things at the wrong time. You get frustrated, they get frustrated, you have a silly argument. You smile when you haven't a clue why but hope it is appropriate. You wonder what you just agreed to. You jump to conclusions.
A good conversation is interactive. One that builds on what the other says. You pick up things as you go adding to your cumulative wisdom and learning on subjects. Your mind is free to think and ponder while you talk and listen, allowing you to add your piece on issues at exactly the right time. You don't have this space if you are severely deafened.
Hard of hearing people don't miss odd words or sentences - they miss whole conversations, get totally confused, different things don't gel together or make sense. In concentrating so hard on hearing you forget the start of the conversation or what you meant to say or even at times what the whole conversation is about.
A hearing loss is not about not hearing, it is about failing to connect with friends, family and other people. It affects you every day, every week of every year.
Every Day
People have all sorts of accents, they shout, mumble or whisper. Announcements in public places are din in the clouds. You think you hear something. What is it? Where is it coming from? Am I imagining it? You need to be able to live with confusion and uncertainty.
Listening/hearing for a severely deafened person is hard work. If you have a few difficult hearing situations in a row, chances are you will be mentally exhausted and incapable of handling ordinary situations.
Very few conversations are one to one, face to face, in quiet situations with good natural light and with somebody who understands how to speak clearly to a hard of hearing person.
Social situations where everybody else is relaxed, chatting and enjoying themselves often present the most challenging environments a hard of hearing person faces. Some people use the term 'hostile environment'. You can use all your mental energy and concentration and still fail to follow anything, or the one time you hear something it is a stupid comment, and you end up frustrated and depressed. Often the situation is so hopeless you cope by withdrawing.
I know I have a good sense of humour but I rarely get a chance to share it. I can't do anything with subtlety at all. I either do it clumsily or stay quiet.
At work it’s difficult to phone but I grit my teeth and carry on hoping each call is a person who speaks clearly (not loud). Email is great but emails can be ignored. It is no substitute for picking up the phone and talking direct when need be.
Telekits are my worst nightmare heavy breathers, crisp eaters, pen clickers, you know who you are, even when asked people still don’t use the mute button.
You can't follow meetings - you are slow or don't pick up underlying tensions and group dynamics, you often miss out on key points and can't participate fully. In short, meetings leave you wrecked.
'Working' is often viewed as successfully coping and dealing with your problem. I myself signed up to this in a big way over the years. However you can 'successfully' run yourself into the ground.
Emotions
The extent of my hearing loss, combined with how socially active I am and how I would like to be means I am severely testing my psychological well-being.
When I was young I did not know I had a problem. I had no reason to believe it was abnormal not to hear words in songs or people whispering - surely everybody mishears. I just got on with playing games and sports.
But I could not ignore the situation forever. Gradually I accepted it was not normal to mix up sounds, be confused, slow to cop on. I kept this knowledge to myself, pretended to hear, laughed and smiled. I kidded myself that I was only mildly deaf and had no real day to day problems.
By my mid-teens I was having lots of problems with spoken languages in school. Different teachers for every subject, with different accents and the awful habit of talking to blackboards instead of the class. I had trouble at the family table; it was hard to keep up with conversations when drinking with friends. I kept saying "What".
I ignored the situation; I read a lot of books, as TV was no good until subtitles came along. I was in denial for a long time. My family was even more so. When my hearing disability was eventually discovered my world changed I was singled out at school as being “different” I was alone with my problems.
At some stage though you have to acknowledge the problem, to share the burden, admit you can't cope and look for help - easier for some than others.
After many years living with the problem people assume you have mastered the situation. They want to feel everything is ok. You can feel inadequate because you have not mastered the situation.
Deafness cuts you off from people. You can be very isolated and alone at times. You can be very sensitive and easily hurt. In response you lose your temper and are insensitive yourself. You get frustrated, angry and short tempered. Nobody can be blamed and it is not easy to dissipate it.
You can be embarrassed, feel inadequate and get depressed.
You must find a sensible balance between avoiding difficult situations and living life to the full - much easier said than done.
I try to remember other people have problems greater than mine. I try to guard against overdoing the moaning and feeling sorry for myself, and I also try not to blame my hearing loss for all my faults.
18 comments
Comment by Leanne posted on
What an absolutely brilliant post! I think this may be the most accurate account of hearing loss I've ever read. Thank you for sharing your experiences Mike.
Comment by Mike Smith posted on
Thanks Leanne
Comment by Jayne Barber posted on
Thank you for giving us an insight into your life Mike.
One of the things I love about working in an office environment is meeting people with varied abilities, who inspire me. Working closely with a colleague who has a hearing impairment recently reminded me of how we take all sorts of things in our life for granted.
My husband is deaf in one ear...no it isn't as a result of my nagging....but like you he fills in the gaps in conversations, guessing what was said.
On a trip to Ireland a while back, the lady in the tea shop asked if he wanted a cup or a mug, he replied "milk please"....we did laugh about it and through the whole holiday the answer to everything became "Milk".
As I approach 57, I too have noticed a change in my hearing so I guess our future conversations will be dairy based!
Comment by Andy Hopkins posted on
Excellent funny and very true I too have 98% loss in my right ear and the world seems diffrent especially my love for music toook a massive hit ! But I get by just like the millions out ther that have partial or full loss, a massive loud hello to you all .
Andy.
Comment by Debbie Mitchell posted on
Thank you for sharing this Mike, it's brilliant. I too have a hearing loss so encounter the same challenges as you each day.
Comment by Deborah Yeates posted on
Many thanks for taking the time and energy to create this insightful post, Mike. It is so important that everyone is able to try and understand what it might be like to have a hearing disability. I agree with other sentiments that too much can be taken for granted. Thank you again.
Comment by Catherine posted on
Brilliant witty informative read!
Ever thought of writing professionally...
Amongst other emotions.. you certainly bought humour to my day
Thank you for sharing Mike
Comment by June Shearing posted on
This is a great article. I have worked with a deaf people before at Church using sign language to communicate and certainly group situations are the worst. I was always trying to listen, tell her what was said and then, at times missing the punchline as people laughed. I found having learnt shorthand helped as you are always behind what is being said but trying to keep the deaf person up to date so they laugh at the same time is almost impossible. The other bit is that if you sign nothing is totally private and open to everyone that signs.
Comment by Sue Neesham posted on
Thank you Mike for writing such a brilliant description of living with severe deafness. My husband also has severe deafness and he tells me that this describes his circumstances exactly, especially as he was diagnosed at 8. The only difference is he says 'Yes' with a vague smile when he does not hear.
I appreciate you mentioning how your family are also affected by your hearing problems. I am printing your article to pass to our daughter as I am sure it will help her understand her Dad better.
Comment by Joe Hill posted on
Very thought provoking. I often get frustrated at having to repeat things to my mother whose hearing isn't great. I'll try to remember this in future.
Comment by Andrew Towers posted on
Thanks for sharing your story Mike. I haven't got a hearing impairment and you have given me an insight into your experiences. You have also given me an incentive to do better, try harder and remember to look at people when we are having a conversation and to be understanding if the other person (people) in the conversation doesn't hear.
Comment by Sue Lewis posted on
thanks for this - I am severely profoundly deaf and empathised with it throughout. Like you I am a talking/ listening deaf person and because I sound more or less the same as everyone else colleagues and sometimes family and friends often forget that there are times when I have simply misheard rather than not listened. Similarly there are times when I interrupt because the intonation appears to suggest someone has come to the end of what they have to say and in reality they were just leaving a longer pause.
The worst things for me are around open plan offices and phone calls - even if the person ringing me has a clear voice. the noise around me is picked up by my hearing aids and so it masks the call.
Comment by Geraldine posted on
Thank you for taking the time to write this. As a deaf person with two hearing aids it is great to read other peoples experiences. I was the girl at school who the teachers said was "shouting" and "who's voice could be heard above everyone elses"....as it happens I had herediatary deafness along with my Mam, Grandma, Aunties and Uncle. Getting a second hearing aid several years ago was a revelation. Being deaf has it's postive points, I have loads of funny stories of things my mam has misheard and being able to turn down when things are too noisy is great! I used to be embarrased about not being able to hear when I was younger but now although it has it's challanges and I have moments of social awkwardness, I really couldn't care less!
Comment by Helen posted on
Thank you - this has made me stop and think. It explains clearly the challenges you face and it is an important insight for those of us who have not experienced anything like this. I will remember this and take lessons from it - put phone on mute - look at the person I am talking to etc.
Thank you
Comment by Guy smith posted on
Hi Mike,
What a great story!
As I read it, I completely empathised with you being also severely to profoundly deaf.
All the emotions you have described are the same as the ones I also experienced growing up. It wasn't discovered I was deaf until I reached 4 years old back in 1977. things were very different back then to what support is available now.
I've always taken the view that no matter how hard it gets, to never let my hearing loss hold me back and find ways to make it work.
I'm more pragmatic as I'm older now and I'm very lucky to have a very supportive and understanding hearing partner with 2 step daughters and a 2 year old daughter of my own which present challenges all by themselves. I also have a very supportive manager and team enabling me to push myself harder to achieve more things.
It is however absolutely brilliant to see a post I completely identify with and a reminder of how far I have come.
Thank you Mike.
Comment by D H posted on
such a real insight for those who don't understand. thank you for sharing, it really resonated with me. I am deaf in one ear but the noise of not hearing can be quite deafening too. Trying to take notes at a noisey meeting while all you can hear in your head is a constant buzz or high pitched ping is so frustrating. My colleagues are kind and helpful and at home family speak extra loud which as you say is not always good. Thanks for sharing it really helped and everyone else's comments too. I don't feel quite so alone. 🙂
Comment by Judy posted on
Thank you Mike for giving such an accurate description of what is like to be deaf. Being hard of hearing since birth it was like reading my own life story, I am now 72 and still have the privilege of working. Yes, the phone is my biggest nightmare and I feel, it has held be back from gaining promotion and being able to apply for more interesting jobs. I too have wonderful support from work colleagues and family but would love to see more deaf awareness in the work place and issues acted upon and not just discussed. It maybe too late for me but I would like the younger generation, who are Deaf or hard of hearing, not to have to suffer the same frustrations and barriers of reaching their full potential.
But life is good and yes, there are many far worst off. Being deaf is just one of the many things people have to deal with.
Thanks again Mike, I very rarely leave a comment but your article stirred something in me to respond.
Comment by Fiona Fisher posted on
Thank you for posting this Mike as I was able to share it with my branch to highlight the issues I have too. I have a severe/profound hearing loss [both ears] since birth but have fitted into the 'hearing' world as best I can due to my hearing family, friends and work place. Many assume that as I speak well that I don't have a problem but it is a struggle in meetings and since changing the phone system in my work place I have stopped using the phone as can no longer hear on it and in any case I was finding it more and more difficult as I rely so much on lip-reading. In spite of all this I have over the 25+ years in the civil service managed to get promoted twice and have manage a team of staff for many years.
Some colleagues are more understanding than others; I have had cases of staff getting quite cross when I have asked them to move away from a window so the light isn't behind them to enable me to lip read what they are saying. Work placement adjustments haven't always been easy to obtain - there is complete lack of understanding by some staff/management about the effect of background office noise.
I have had my frustrations over the years but accept this is who I am and try to think of the positives like I'm not woken by thunderstorms or children; my children learnt at an early age that it wasn't any point coming to me in the night as I couldn't hear, they had to go to their hearing father! I can wake up more slowly by not putting my hearing on until I am ready to hear the world again.
I think that any department that has a deaf member of staff deaf awareness training should be provided and made compulsory as we are excluded due to this lack of awareness.