Deaf Awareness Week 2019 : What do I, personally, want people to realise about my hearing?

My hearing loss ‘journey’, if you want to call it that, started when I was in Year 2, which in the UK means I was about 6-7 years old. Awkwardly, I couldn’t tell you exactly what happened with my hearing because it’s just a vague memory to me and I’ve never really had the guts or initiative to ask my doctor or audiologist the whole detailed story of how I lost my hearing as a child. I just remember one day in primary school having the most incredibly painful ear ache. The teacher had to call my mum to come pick me up and as I waited for her I cuddled the class teddy bear to my sore ear – the left one. My memory from that after is quite vague but before I knew it I was being taken from doctor appointments to hospital appointments to audiologist appointments and before I knew it, I was being fitted for my first hearing aid.

A teddy bear sits in the road.
Photo by Marina Shatskih on Unsplash

So, I’m not going to bore you with my complete hearing loss journey because, in all honesty, I couldn’t tell you the specifics of it all. I can tell you I’ve been wearing hearing aids for almost 16/17 years. I can tell you it’s been a difficult journey. I decided for Deaf Awareness Week 2019 (6th-12th May) I would share a couple of honest points about how I handle my hearing loss and being Deaf/hard of hearing. I was extremely inspired by an incredible Youtuber and Blogger called Jessica Kellgren-Fozard. Known online as ‘Jessicaoutofthecloset’. Jessica, to me, is a very amazing role model and inspiration because of how she talks so openly about being deaf and disabled. She created a video a while back that semi-inspired me to do this blog post, which you can find below!

Jessica’s Instagram: @jessicaoutofthecloset

Nevertheless, time for me to be honest about my personal experience of being deaf? Let’s see…

1.I don’t know BSL. Yes, I feel like a ‘bad deaf person’ for this.

Believe me, I want to learn! After getting hearing aids as a child, I remember really not wanting to adjust to them. Like, for my child self it was a huge no-no. I already struggled with confidence, making friends and fitting in so I didn’t want anything that, I thought, would make me separate or ‘different’. Unfortunately, because of refusing to wear the things that would help me hear, I struggled even more with communication which lead me to believe my ‘difference’ was the cause. I refused to wear my hearing aids for quite some years and didn’t enjoy acknowledging it or talking about it. Whenever I had audiologist tests to see how my hearing was coming along, I tried and strained so hard to prove I could hear ‘normally’. If sign language was ever offered to me, I probably refused it. It probably wasn’t until about 4 years ago that I started trying to slowly accept that this was who I am, and I shouldn’t be ashamed. However, I still don’t know the language that could possibly help me communicate better! I feel very silly for this and one day want to try and make time to learn it.

Tips for being Deaf Aware: Look at me. Turn your face towards the person with hearing loss so they can see your lip movements. Speak clearly: Not too slowly, and use normal lip movements, facial expressions and gestures. Don't shout: Keep your voice down. It's uncomfortable for a hearing aid user if you shout.
From National Deaf Children’s Society Twitter

2. Yes, I need subtitles. No, my hearing aid doesn’t ‘cure’ my difficulty with hearing.

One of my ‘funnier’ deaf memories is working in a cinema and having to hear a woman complain that the film screening she had arrived to watch had subtitles – asking us to remove them because they would ‘distract her’ and she didn’t see the point. She eventually blurted out ‘who even needs them?’ to which I, without thinking, pulled my hearing aids out and said ‘people like me’. Probably the only power move I’ve made in my entire 23 years of living. She then stammered back ‘yes but surely then you can hear, and you don’t need subtitles’. I don’t think people realise how hearing aids work. I am no expert and can only explain in the bluntest of terms but hearing aids just take the sound and amplify it. If someone on a tv show or cinema screen is mumbling some important plot point that explains their dramatic backstory underneath even louder SFX noises. I ain’t gonna understand it.

My own hearing aids, which are purple Phonak models, sat in their box which has a bright green lining.
My old reliables

3. It can be incredibly isolating.

In the video Jessica made above, she advises particular things hearing people can do in conversations to help deaf people feel more included in conversations and social settings. I empathize with all of them and find myself wishing a lot of the things she requests was just common place. I think sometimes even my friends and family aware of my hearing don’t realise that even with hearing aids on, lip-reading and expression-reading is so vital to helping me communicate. As soon as you turn your back on me mid-sentence or cover your mouth, it’s almost like trying to listen underwater. Noisy bars and social spaces are also the absolute worst. There’s been times where I’ve just gone home from outings because it’s so incredibly draining trying to hear every single word of group conversations and involve myself. I’m spending so much energy trying to understand what’s going on and then asking people to repeat back that I end up barely placing myself in the conversation. It feels like I’m watching it from afar, in some bubble where sentences are choppy and every so often someone talks in gibberish.

People cheering their glasses of wine in a bar
Photo by Yutacar on Unsplash

4. I’m still learning to talk about it.

My brain is one of them silly ones that can hold negative interactions for years but the moments when someone’s been accepting and understanding can easily slip from my memory. I have had some unfortunate times where people, even ‘friends’, have randomly claimed I’m faking my deafness (ah yes, just picked these hearing aids up from the costume store obvs!), that I ‘talk’ about it too much and that I ‘use it as an excuse to not listen.’ It’s unfortunate that, at least 4/5 of these times, I’ve been told to shut up about it just as I was starting to not feel weird about saying ‘I’m sorry could you repeat that, my hearing’s quite bad’ or ‘Sorry, I hadn’t put my hearing aids on yet, could you say that again?’. It’s a massive confidence killer, more than most people even ones close to me understand. That moment when you huff, roll your eyes and go ‘It doesn’t matter.’ when I’ve asked you to repeat something? Literally the worst. Please be understanding with me if there are days where I’m suddenly a lot more confident about talking about it and then the next week I forget my hearing aids. I’m working on it. Yes, I know I’m not the only deaf person (I’ve had this exclaimed at me too when I’ve opened up about a hearing worry – it’s a tad rubbish).

Top Tips on how to be deaf aware: 1) Make sure you have the attention of the person before you start speaking. 2) Places with good lighting and little or no background noise are best for conversations. 3) Use plain language, normal lip movements and facial expressions. 4) Check whether the person understands what you are saying and, if not, try saying it in a different way. Never say 'don't worry about it'. 5) Keep your voice down as it's uncomfortable for a hearing aid user if you shout. 6) Learn finger spelling or some basic British Sign Language.
From Action on Hearing Loss’s Twitter

The best thing to bear in mind if you are a hearing person – not all deaf people’s experiences are the same. Not all disabled people’s experiences are the same. This is a post from my personal view, so someone who has been deaf since birth will have a completely different life story and needs and requirements to me. What works for one person with a learning disability will probably not work for someone who is deaf. What works for someone who is deaf will probably not work for someone who only has one leg.

Thank you for reading, you can find out some more about Deaf Awareness Week and being ‘Deaf Aware’ below!

Everything you need to know about being deaf aware

Tips for communicating clearly

Information on British Sign Language

Action on Hearing Loss’s Instagram

Growing up with Hearing Loss

My hearing deteriorated when I was in primary school. The most I remember from it is having an intensely painful ear infection and then soon enough being told by a doctor and audiologist I had lost hearing in my left ear. It seems like a massive blur to me now but I know I had to go through a lot of tests – blood, urine, CAT scan etc. Those tests where they stuck little pads to your chest to measure whatever. I was in juniors of primary school when most of these happened so I can’t remember them very well. But alas since then I have had hearing aids.

My first few hearing aids were always so glam. I always asked for ones where the mould had cutesy stuff on it because they could put stickers on the inside or make them glittery or coloured. Admittedly did and probably still would, perk you up about having to wear something in your ear to be able to hear like other kids. I do remember getting teased about it up until around year 8 where I started to avoid even mentioning it to teachers. I was ashamed of my own disability and didn’t want the special treatment teachers went about it. I didn’t like being moved to the front of class so I could hear, I cringed whenever the teacher double checked with me if I had heard everything and god forbid the monthly check the school doctor would do where they’d come and take me out of class to do these little tests to check my hearing and if there was any changes. Looking back I definitely shouldn’t have been ashamed of something I could not have controlled. I shouldn’t have believed something was wrong with me, when really, there was something morally wrong with the children that would get a kick out of teasing me about it. No, whispering rude sentences to me because you know I can’t hear it, asking me if I heard you, then giggling when I say no, isn’t funny at all. It’s anxiety-fuelling and a complete waste of both our times. Get on with your school work and stop being a tool.

Recently in the past few years I’ve finally overcome this embarrassment of my hearing impairment and try my best to bring it up to all people I spend time with on a regular basis. Mainly because A) I am a bit of a ditsy person and sometimes forget my hearing aid and B) Well, either way, it hardly makes it a good day when someone gets huffy and puffy with you when you say you couldn’t hear them or ask them to repeat themselves. However there’s still something in me that stems from, perhaps, the teasing as a child or comments I have gotten as an adult, that makes it rather difficult to bring it up unless asked.

Twice in my late teenage years I have had times where my problem has been dismissed as ‘over-reacting’ or ‘fake’. ‘Shut up about your hearing, you’re not even disabled’ or ‘Oh forget it. I’m not repeating it – you and your so called ‘deafness’. Those sentences stand clear to me in the back of my mind. Obviously because they were like stabs through the stomach from people who at those times were mature in age (well you should be mature at 17-19? Right?), and because they made me feel nervous about telling people about my hearing again.

However, being deaf, hearing loss and tinnitus effects more than 11 million people in the UK. That’s one in six of the population. As well as this, I found it interesting to learn, on average, it takes people up to 10 years to address their hearing loss. (x) You’d think such a thing is crazy, but then when I thought about my history with it up until now – it doesn’t seem all that strange. In this day and age, especially when you’re young, it’s hard to admit to something that can effect your social activity. I admittedly have a complex where I think my hearing loss would burden or annoy people, because they’d have to change their behaviours to accommodate me and ‘I don’t want to anger people’. However, now I have to say to society – boo freakin’ hoo.

Believe me when I say I struggle listening or hearing you. I like being polite to people and believe me never in a million years would I avoid trying to listen to people during conversation. It doesn’t take you much to just repeat what you had to say. Teachers and employers – if you have an employee who has hearing loss and is struggling with concentration or hearing instructions. Try and talk to them. Nobody asks to lose their hearing, lose their sight or any other able ability. Stop assuming that everyone has perfect senses. Assumption makes an ass out of you and I. Or something like that.

 

 

Thanks for reading!

Helena x

hearaid.png
Ta-da! One of my two aids! :o)