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.
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.
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.
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.