Deaf Awareness Week (3rd-9th May 2021): a personal story

by Joy

Deaf Awareness Week takes place this year between the 3rd-9th May. The aim of the week is to raise awareness and challenge perceptions of hearing loss and deafness across the UK.

I first became aware of Deaf Awareness Week last year when the theme was acquired deafness. I have acquired deafness, I have one ear that works but I still have a hearing disability. If I had one arm or leg it would be obvious that I may not be able to do all that a fully able-bodied person could do but with only one (hearing) ear the fact that I may not be able to function as well as a fully-hearing person is not so obvious. On the outside everything appears ‘normal’ and I can have a conversation with you, I can hear what is going on in meetings, I can fully participate in meetings.

So what’s the issue? Why say I am deaf? I even wear a hearing aid (a bone-anchored hearing aid) covered by my hair, which picks up sound from one side of my head, sends it through my skull and is then picked up by my other working ear. So my hearing is back to normal, right?

Well, no. Before I lost my hearing I would get so annoyed with older relatives for not wearing their hearing aids. I thought that the “magic” hearings aids would fix their hearing. But hearing aids don’t work like glasses do for eyesight, they don’t correct your hearing back to “20–20” hearing levels. All they can do is magnify sound and that means magnifying ALL sounds. They may increase the volume of your own voice, say, but this magnification gets drowned out by the magnification of the sound of the lorry that has just driven past.

Hearing of sounds isn’t the only thing that single-sided deafness (SSD) affects, it also affects the ability to locate sound. Before I lost the hearing on my left side, I hadn’t thought of the importance of having two fully-hearing ears. Our ears work together to identify and locate where sounds are coming from. With one working ear this is impossible. A phone can ring in an open-plan office and I am unable to tell if it is the phone on my desk or one on the far side of the room. At home, my daughter shouting to me that she is “here” means absolutely nothing. I can hear her shouting but I have no way of knowing where the shouting is coming from, I need her to tell me exactly which room she is in. Losing my mobile phone and phoning it from the landline to locate it just doesn’t work without someone else helping me locate the direction and distance the sound is coming from.

Two ears working together can also focus in on particular sources of sound. In a noisy living room, without knowing it, you can focus your ears on the TV and “listen out” the other people talking in the same room. The same applies in a noisy restaurant where you can focus your hearing on the person talking to you at the table, rather than the noise from the kitchen.

An excellent video to watch to mirror the experience of SSD in a restaurant can be found here. You will need to use headphones.

With a hidden disability such as SSD it isn’t just the physical disability that’s debilitating it’s the emotional and mental effects, too. In the video, it shows the reactions of the people around. The person sat opposite is smiling at the end of the first bilateral hearing scenario and then at the end of the second clip the reaction is totally different. Imagine how it feels to cause such a reaction and to have no idea why. You’re aware it must be because of something you’ve not heard or a strange response you’ve given to a misheard question but what that is you don’t know. The other person, in situations like this, especially if you are meeting them for the first time, are probably unaware of your hearing problem and you feel they’re just looking at you as though you’re a complete idiot. Of course, you can make your SSD known but is announcing your disability really the first thing you want to be doing when meeting people?

The moment I was told I had lost my hearing, I frightened myself by admitting that I held an unconscious bias towards people with deafness (a story for another time). This makes me keenly aware that the same bias could be held by anyone I tell about my deafness so it’s not really the first thing I want to publicise.

The extra effort and concentration required with SSD is also unseen. This poster compares what a person with deafness may hear, using an analogy with reading a printed sentence, and is a good example of how listening can require so much more concentration for someone with deafness.

Just listening and avoiding falls and accidents (hearing loss also affects your balance) can be mentally exhausting at times.

These other posters from Action for Deafness show further ways in which hearing can prove difficult.

Despite all this, when filling in forms, where you’re asked to simply tick yes or no to the question Do you have a disability? I don’t know how to answer. Some days I can’t bring myself to tick yes as I feel too guilty. On a good day I can feel unaffected by my SSD, I’ve been on Teams/Zoom meetings and heard everything (I think) and been understood perfectly well. I’ve listened to the radio and watched TV so I’ve no hearing issues, right? But on other days it’s completely different and I have no hesitation whatsoever in ticking the yes box. The exhaustion and concentration of trying to hear has been so draining. I’ve gone to a friend’s celebratory meal at a restaurant and found the emotional and mental aspect of not being able to interact with anyone else at the table more debilitating than the physical disability itself.

I hope this blog has given you some insight into what living with single-sided deafness is like. I know it affects other Library staff and I’ve shared the following article before as it describes day-to-day living with SSD much better than I could: Single Sided Deafness (rdmp.org).

I would encourage everyone to read it as I know it can have a positive impact and want to thank colleagues who have read it and now kindly consider my hearing in their simple actions, such as which side of me they stand or approach me from. It makes a huge difference.

Other simple actions that can help you be more deaf aware are:

Make sure you have the person’s attention before you start speaking.

Try to find a quiet place to communicate with little background noise as this can be distracting.

Use your usual voice level. If a deaf person uses a hearing aid it can be very uncomfortable for them and can seem as though you are shouting.

SSD does have a few advantages. I can drown out the busy road I live on by burying my good ear in the pillow at night. Funnily enough, it didn’t drown out my kids’ crying as babies — it was my husband who conveniently went through a stage of complete hearing loss, instead 😉 And for those of you with a medically-minded curiosity there is a link on BoB to an episode of Surgeons: At the Edge of Life, a TV programme which shows the same brain surgery I had to remove the tumour that caused my SSD .

And finally, a note for any Manchester Met students affected by any of the deafness issues raised in my blog:

The Inclusion and Disability Service help disabled students to access the support they need to succeed at Manchester Met.

Students can let us know about their disability by completing a ‘disclosure form via the Digital Student Hub. More information about how to do this can be found on our website.

We will help you, by identifying the adjustments you might need to the way in which you are taught and assessed and this, alongside any health and safety and accessibility considerations, will be captured in a ‘Personal Learning Plan’. We will also help you to apply for external funding such as Disabled Students Allowances and arrange any human support you might require, such as notetakers or British Sign Language Interpreters.