Monday, 13 January 2020

My life with hearing loss

ATR recommends this blog written by Steve Claridge, as a deserving read.  


"I’m 45 years old now, I have been steadily losing my hearing since I was 5 and have been wearing hearing aids on-and-off for most of that time. Here’s my story:

Childhood Hearing Problems.

At the age of 5 my parents took me to the local doctor because I was sometimes not responding to them when they talked to me, the doctor referred me to the ENT department of the local hospital. I was diagnosed with a sensorineural hearing loss and came away with a pair of BTE (behind the ear) hearing aids that had full-shell molds, the piece of the aid that went behind my ear was pretty big and bulky and the bit in my ear took up the whole space and pressed against the sides — I hated it and didn’t want to wear it.

Making Everything Louder.

As this was 30 or so years ago, the hearing aid was an analogue device and did not have the sound quality and speech recognition that today’s devices do, it basically just made everything louder. My parents made me wear the aids to school and I do remember wearing them in class, but my Mum said, years later, that I didn’t wear them at school for long. 

I used to wear them up to the school gate and then take them off for the day, only to put them back in at home time so Mum didn’t realise. I remember being teased by the other kids about them, not a lot though, nothing sustained or evil, just the usual level of joshing that kids do with each other — some other kids got teased for being overweight, having ginger hair or other minor reasons, I got it for my hearing loss, to be honest I don’t remember it bothering me that much.

Just Stopped Wearing Them.

So after a short while, I stopped wearing the hearing aids, I guess even though I wasn’t too bothered about teasing I still wanted to fix it, to be normal and not to stick out. At the age of 5 I had a minor hearing loss, I missed the odd word and probably didn’t hear people at times when they were not in front of me. I left education at 18 and I didn’t wear my hearing aids at all after that initial period. All through school and college I was sitting near the front of the class so I could hear the teacher.

Progressively Worse.

During those years my hearing was getting progressively worse, what started off as a minor loss became a moderate one and as each year passed it became more and more difficult to hear in noise, in groups and when people were not directly in front of me. During my early teens, my parents took me to a private hearing aid dispenser and I got a pair of small in the ear (ITE) hearing aids that were by no means invisible but were much less noticeable than the old hospital ones. 

They were also a lot better at blocking out noise and allowing me to hear. By now, I was a teenager and the need to be cool and to fit in with the group was way more powerful than the need to hear, so I didn’t wear any hearing aids, despite it starting to become a real problem to hear every day.

By the age of 17 I was missing quite a lot of what people were saying so I was trying to cope in different ways. Lip-reading and watching the body language of the speaker were two things that worked incredibly well, over the years I’ve become very adept at lip-reading and when you watch someone’s body language quite closely it is surprising how much you can understand about the meaning and intention of what they are saying.

Hiding My Hearing Loss.

I did things that were less useful, I laughed when someone finished saying something I didn’t hear, I changed the subject if someone told me something and then a while later asked me about it I would say I’d forgotten about it instead of saying I never heard it. Often, rather than asking someone to repeat themselves I would just respond to what I thought they’d said — their laughter when I said something stupid was crushing and entirely my own fault."


ATR Comment:

Experiences can vary considerably of course but an excellent, if  potted version of the anguish and mental pain that can come with hearing loss.  Interesting in that the perceived dilemmas regarding identity or culture were non-apparent.

Of course, our times were different too so issues were quite different and black and white then, and there was no avenue to fight or confront huge disadvantages laid at our door.    I get responses 'Oh, that would never happen today!' but I am still seeing that it actually does..  Like the blogger described, I put all my considerable experiences down on paper a few years ago, as a more 'putting thing behind me after 50 years thing' but clearly I haven't and probably never will, as hearing loss defined me as a person and individual but left me in a permanent 'no-man's land' in reality.  

ATR did write to a publisher who had an interest in issues of hearing loss, (And has been approached twice since), but the publisher said 'It is all about sign language now and to be honest, nobody wants to read negativity, if you could rewrite parts with a more positive slant then certainly we would consider publication..."  

I decided (A) I would not take him to task for non-awareness and (B) OK nobody was going to tell me it would be better if I jollied it up a bit.   Personally, as regards to running frustration off, the only running I do is at systems that make issues for me and mine and put myself centre stage so to speak to confront issues of poor access and awareness, it is a thankless and unappreciated task I set myself and I get kickbacks from HoH and the deaf alike because I am not an A or B person.  

That is their hang-up, not mine.  Obviously, we all have a right to tell us how it was for us, but putting it to print.   I still never consider myself really disabled despite every single clinical area trying to convince me I really am.  If it came with cash I might have gone with it since there is no mileage in hearing loss alone you have to have some 'edge' these days.  

That is not so to say I have ever joined a deaf or a HoH community since I never did that either and my hearing membership is somewhat iffy if truth be told.  I will probably curse hearing loss until I am no longer able to.

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