I was diagnosed with quite significant bilateral hearing loss when I was about 30. I’ve always had it, but I only became aware of it when I was in my mid-twenties.
It was explained to me that, in my case, it’s not genetic. We’re all born with a certain quantity and quality of hearing – it’s much more than we actually need – and as we get older we start to lose some of that. Then, only when it’s decreased to a certain level does it become apparent to us that we’re not quite hearing what everybody else appears to be hearing.
No, I have made great strides to hide it, just because of the prejudice that’s out there, really. I know that we have legislation in place to protect people from being discriminated against, but people do have prejudices and you just want to be mindful, if you have any kind of disability, not to put yourself out there where people might have reason to make a decision against you.
For similar reasons, while I’ve always strived to do a good job and repeatedly been recognised for my contribution with the offer of a promotion, I’ve turned them all down. With a promotion comes a new role, a role that may require more face-to-face contact and more meetings, and that leads to a rise in anxiety levels.
But you also get to a certain age in life, and you begin to think: no, I’m not doing this anymore.
What does World Hearing Day mean to you?
Coming to terms with my own hearing loss has been quite difficult. Very difficult, actually. As a consequence, perhaps, I didn’t acknowledge that dedicated events might benefit people with hearing loss, because hearing loss wasn’t something I was ever prepared to accept about myself. I have since become persuaded that these initiatives may help in raising awareness.
Why do such hearing-related initiatives matter?
When you have a disability that’s hidden, other people’s perception can often be wrong. For example, some people believe that if you have hearing loss then you can’t speak properly, and therefore can’t do certain activities.
People keep prejudices of this kind inside them, and they become ingrained, and it becomes a belief that people just can’t deviate from. It’s only by being around and being aware of deaf people, or people who are hard of hearing, that one can realise what hearing loss truly means for them. You realise: this person just can’t hear what I’m saying; I just need to make an adjustment to the way I communicate, and then I can get exactly what I need from this person; this person is an intelligent person; this person is an interesting person.
Are we making some progress, as a society?
Yes, I think so. For example, had I begun to experience hearing loss as a child in primary school, I would probably not have been allowed to continue in mainstream education, and would have been put in a “special school” – which is what they used to be called. I would have been ostracised. But now, thankfully, that sort of thing doesn’t happen.
As well as prejudice, what practical impact does hearing loss have on your daily life?
I’m going to start with some negatives, but the impact isn’t all negative.
You can’t watch TV easily. You can’t enjoy concerts or the theatre, which is a shame because my daughter has her own theatre company. You can’t understand announcements at railway stations or on trains. You can’t understand speeches or presentations, things people are saying in restaurants.
You’re not able to use older telephones. Imagine not being able to use a telephone up until you got your smartphone and Bluetooth technology.
Take automated phone banking. What do I need to press to speak to an advisor? Two, three, five? Which is it? Eleven? Seven? These all sound the same.
On the positive side, I sleep like a baby. And when the world gets too much, I just switch it off and get a cup of hot chocolate and a book!
Does hearing loss change the way you interact with hearing people? Can you understand each other easily?
Hearing loss doesn’t just affect whether you can understand people. In conversation with someone with hearing, you have to dominate the interaction so that you know exactly what’s coming back at you. You can’t afford to let the subject matter of the conversation deviate onto something that you’re not prepared for. So it can make you come across as quite forthright, sometimes a little bit bossy.
What do you think of technology to help with hearing loss?
I think electronic devices are great for trying to correct hearing loss. But hearing loss isn’t just about hearing loss itself, it’s also how you feel about yourself as a person: who you thought you might be, who you think you are, and who you’ve ended up being are not necessarily the same thing. So it has a more profound effect on a person than just “Here’s a hearing aid. Everything will be fine.”
What electronic devices do you use to assist you in your daily life?
First of all, digital hearing aids. They are by no means perfect, but compared to the old analogue ones? Much, much more sophisticated!
Then, Bluetooth, for example for connecting my smartphone directly to my hearing aids. I can be in a room on the other side of the house, my phone rings, and it’s straight in my ears. Brilliant!
Zoom. Oh my gosh, the best blessing! Thank you, whoever created Zoom!
I can also rely on brilliant subtitles on the TV. They’re not quite perfect, but we have them on by default in my house. And my husband’s used to them being on: if they’re not for any reason, he kind of misses them: “Where are the subtitles?”
So I guess you’ve been really pleased to see how small hearing aids have got in the last few decades!
Hearing aids used to be a very crude implement that would amplify all sounds. Now they can be calibrated to ensure that only the right sounds are enhanced and amplified, or even subdued. They also got very discreet.
We’re not completely there yet though. We can’t replicate hearing, even with the most sophisticated hearing aids. And if your aid is not powerful enough for what you need, it could be quite visible.
And you’re still at the mercy of electricity. If you can’t charge your hearing aids overnight in their little charging pod, what do you do the next day?
And you can’t wear them if you want to go swimming: so you don’t go.
And that anxiety when they break… Daily life stops. It just stops.
And are there any devices that you find disappointing?
Those that draw attention to our differences. There used to be a product on the market which you wore around your neck, like a little box which amplified sound together with your hearing aids. But it had a flashing light on it! So you’re walking around with a flashing light. No thanks.
Do electronic devices sometimes cause issues that people aren’t aware of?
Sometimes, in video calls, you’re relying on the person who’s speaking to have very good communication skills. Some people are very nervous about talking in front of lots of people, so there’s a lot of movement, moving from side to side and away from the microphone, and so some of the audio can get lost. If we had better closed caption subtitles in real time on webinars and presentations, that would be a big help.
How much does the environment in which the speaker is located matter?
When you’re trying to hold a conference or a meeting, the environment is so important! If you have lots of hard surfaces, any sounds coming out of the speakers get bounced around and you just get a lot of reverb. It is a cacophony of noise. Making sure that electronic devices and the acoustics of the room work together is essential.
Hybrid meetings – in which some participants are in the office, and some join from home – have become commonplace. Are they accessible for people with hearing loss?
Not really, because often the spaces people join from have poorly designed acoustics, and so the sound gets corrupted before it even comes to the microphone.
Are there any extra steps you need to take to participate in hybrid meetings?
I try to know ahead of time what the agenda is to know the subjects that are coming my way, then pretty much lip read.
Do you prefer to be in the office or join on Zoom?
I think what’s best for me is that I am in isolation during the meeting so I can control my environment and the way in which I am receiving information. I can have my door closed, rugs on the floor, soft furnishings around me. I don’t feel this great need to be around a lot of people, possibly because that just creates a lot of noise for me. Perhaps a well-designed room with only half a dozen people may be attractive, but I will still choose Zoom for every single event over being in the office.
A recurring theme in your answers seems to be that you’d like to be in control – of the conversation and of the devices used.
We have to, you don’t have a choice. You have to control it. Otherwise people think “You know, she got everything wrong. We asked ‘what colour do you like?’ and she answered ‘half past two'”. That is why good electronic devices are worth their weight in gold.
What electronic devices would you like to see developed or improved?
Hearing aids that can replicate hearing properly because, even with the most sophisticated ones, we’re still not quite there. You know, to get the fine nuances of hearing, those we hear with our ears.
If you could have it on your doorstep tomorrow, what would your dream electronic device be?
Some kind of device that can measure the acoustics of the room and automatically adjust the speakers to respond to the environment they are in. There must be something out there already, but not widely available. You have a speaker that can send a signal out, and the amount of bounce-back that it gets can be used to fine tune the sound that it sends out.
Or if you could make the tiny hairs in your cochlea grow back. So I guess artificial hairs? That’s what we need!
Daniel and Alessandro thank their colleague for agreeing to share her honest and insightful thoughts on such a personal topic.
Daniel Jarrett
Alessandro Sona
