Deaf Awareness Week – My Story
Hello everyone. I found out earlier today that this week is deaf awareness week. As someone who has a hearing loss I’m going to be sharing the shit out of related articles, and posts on Twitter and Facebook this week. I also decided to share my own deaf story.
How Deaf Are You?
This is a question I get asked quite often when I tell people I’ve got a hearing loss. Deafness can be classed as mild, moderate or severe. It’s also defined in terms of frequencies, high or low-frequency hearing loss.
When I was a child my parents were told I had high frequency hearing loss. Although my hearing loss is worst at high frequency , as a diagnosis it wasn’t that useful. The assumption being it was ‘only’ high frequency noises I couldn’t hear.
As an adult I’ve been diagnosed with moderate hearing loss. This diagnosis is more meaningful to me as it reflects the fact that my deafness impacts on my every day life. However most people won’t realise there’s anything wrong with my hearing unless I tell them.
My diagnosis story
I have what is known as congenital hearing loss. That basically means I was born with it, and it’s a genetic condition. You might assume that ment I was diagnosed at an early age, but that wasn’t the case.
I was bought up by foster parents, and there was very little known about my family medical history. The deafness thing was something nobody was aware of. When I started primary school I was labeled a daydreamer. Someone that never paid attention to what was we were told. I was the girl who got lost at London Zoo as I didn’t hear where we were suppose to be meeting. This ment I wasn’t popular with my teacher, she hated me and I didn’t think that much of her either!
At some point somebody realised maybe I couldn’t hear, rather than I just wasn’t listening. I had the usual hearing tests (listen to the headphones and press the button every time you hear a noise) and the diagnosis came back as high frequency hearing loss. The doctors told my parents it wasn’t a significant problem, and the only adjustments that needed to be made was to ensure I was sat at the front of the class in school.
I’m adding a section about tinnitus at this point in my diagnosis story as I was probably 14 or 15 before I realised tinnitus was a thing. I remember watching a medical thing on telly. I had a real WOOOAAHH moment when I realised not everyone has a constant ringing in their ears. Prior to that its something I had never questioned.
Tinnitus is something that goes hand in hand with hearing loss. It’s caused by damage to the fine hairs in the ears that detect sound waves. In healthy ears these hairs send signals to the brain when they’re at rest. If the hair is activated by a sound wave the signal sent to the brain changes. The brain registers the difference in the signal as a sound. If the hairs become damaged, as well as not being able to register sound waves, they stop sending the ‘at rest’ signal. the brain interprets the lack of baseline signal as a sound.
People may consider tinnitus to be a trivial condition. It’s not in itself dangerous and certainly not life threatening. However sufferers and tbeir families will tell it can be far from trivial. I consider myself lucky in the sense that I’ve never known life without tinnitus. Although it is annoying and intrusive, I’ve learnt to deal with it. People who develop the condition later in life can find it horrendous. I’ve spoken to people who have had loved ones killed themselves because they couldn’t live with it.
Adult diagnosis and hearing aids
I dealt with my hearing loss during my teenage and early adult years. When my first-born began school it became apparent that he had problems with his hearing too. I took him to the doctors and he was tested and given hearing aids. During the trips to the hearing clinic I spoke to the doctors about my own hearing. They advised me to get re-tested by my doctor so that I could be referred to them.
I got the referral and had all the tests. In true Mrs A style my particular hearing loss isn’t the easiest to fix.
This beautifully drawn graph (it took me ages) shows the difficulty in treating my hearing. For people with hearing loss that is the same across all frequencies (labled typical hearing loss, although I don’t know how typical it is) hearing can be improved by amplifying all sounds. This can be done with a hearing aid.
Because my hearing loss isn’t the same across the board it required an aid that would boost some frequencies more than others.
I eventually had my first hearing aid at the grand old age of 32. It wasn’t a success. I found that even though the range of things I could hear was greater, there was still a lack of clarity in sounds. I found it impossible to ignore background noises (that I previously hadn’t heard). Also I found it really weird when someone spoke to me from a distance, for example across a table. I would see their mouth move, but their voice didnt seem to be coming from them.
In short hearing aids didn’t work for me. I think if I had been much younger it may have been different. However after 32 years in my quiet world I found ‘normal’ sounds far too intrusive. I’m told if I had given it months rather than weeks my brian would slowly have adjusted, but I decided I actually preferred my quiet world. And that is an acceptable choice.
So whats life like being a bit deaf?
For the most part perfectly normal. It’s not something that I think of on a daily basis. I do make some adjustments to account for my hearing. I have subtitles on when I’m watching telly. Mr A is use to them now, but other people who visit find then really distracting.
I avoid crowded places when I go out with Mr A or friends as I can’t follow conversations unless it’s quiet. This can make me come across as stand offish or possibly just plain rude in group settings. I can’t join in conversations because of my hearing, so will often just stick my nose in my phone instead.
When I’m talking to people I lip read along side listening to them. When this post came up on my Facebook feed this morning I read it like a nodding dog.
The post was created by Action Deafness, a Leicester based charity that provide buisiness solution services to deaf and partially deaf people around the UK.
The focus of the posters is how to talk to people who have hearing problems. The things they mention are all things that make it harder for me to hear people talking.
How can people help those with hearing problems?
It’s really not difficult to talk to people who are a bit deaf. Speak clearly, don’t cover your mouth, look at the person when your talking and in a group conversation let people speak one at a time. Really these are all practices people could adopt in all their conversations as they form the basis of respectful communication.
Have you got a hearing problem, or know anyone that does? Are you doing anything to help promote deaf awareness week?
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