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

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