Helen Keller was amazing. After measles left her deaf and blind, with the help of her teacher Ann Sullivan, she was educated and became famous. She was the first deafblind person to go to school and then she went on to university, with her teacher and intervener Ann Sullivan by her side.
But Helen was very lucky. Most children born deaf and blind don’t get an education – they get left in a world of darkness and silence.
For most deafblind people, like me, it’s not complete darkness or silence; instead, it’s percentages. In my case, I’m more than 65% deaf and blind. This means that I have 4/20 sight, even with my glasses, while most have 20/20 or near that with corrective glasses. I also have severe hearing loss. Being born deaf or blind makes life hard. Being born both? Well, that only makes it more complicated.
From the beginning, learning is hard. Sight and hearing are the major tools used to learn: you see and you copy. You hear and you repeat. I can’t do that the way you can. That made growing up was hard and exhausting. I didn’t speak until I was almost five.
Socialising is next to impossible. Imagine a crowded nightclub with loud, chaotic music and very poor lighting, and you are trying your hardest to hear an important conversation. You have to use every ounce of concentration you have to make out the voices, while paying 200% more attention to where you set your glass of beer down!
This is my life, all at the same time.
“In this pandemic, people are a little more patient – they too now know what it’s like not to hear things properly.”
So you can imagine I don’t often go to parties. Because I can’t mingle and chat in a loud, crowded room, even trying to do that is just exhausting and not the least bit fun. It’s the same for restaurant invitations. Why go, when the ambient conversation in the room makes it almost impossible to hear the conversation at our table?
In almost all social situations, I end up silent and alone – even though, as my husband can assure you, I have a lot to say. Because of this, I’m often called boring or anti-social behind my back, by friends and acquaintances, even family, who just can’t understand how it feels. It’s unkind, it’s untrue, and it’s made me withdraw into myself for much of my life and that’s a lonely place to be.
But I’m lucky to have friends who understood the problems and made allowances in our friendships to make me feel included. Takeaways at their places or mine, where we can keep background sound to a minimum and actually chat over our chicken wings or Chinese food. Parties where even though I may have been off by myself, they would mingle over to me and make sure I had snacks, drinks and conversation. These times are special, etched into my memory like a brand.
So too, are the things that my husband does to make me feel special and included without making me stand out. Dinner out, is often just for two, and almost always at one of our few favourite places, quiet and well-lit, that understand my sight and hearing loss. And when we are out, he guides me using his wrist: holding hands – and I’m sure looking very romantic – he flicks his wrist to tell me left, right, up or down, in a silent communication only we know. We squeeze hands to say I love you.
Like everyone else, the recent nightmare that is Covid-19 has made my life even harder too. Just take even socially distant conversation: when someone is trying to talk to me outside and a car goes by or a plane goes overhead, all I hear is noise. And it’s not like I can apologise, get closer, and ask them to repeat what they said. And don’t get me started on facemasks and perspex screens.
However, there are small mercies. In this pandemic, I’ve seen people more willing to repeat what they said without getting angry. They are a little more patient – they too now know what it’s like not to hear things properly.
And though it’s hard, life for the deafblind is much different than it was even 50 years ago for me starting school. Today, deaf and blind children have advocates and intervenors, specially trained to act as go-betweens for those with deafblindness and the able world, using tactile signing to communicate, just as Ann Sullivan did with Helen Keller.
I often wonder if an intervenor might have made school a bit easier, and my grades even higher. But I can never know that. What I do know is that at least they may have me seem less ‘boring’. Because, well, I’m not boring. I’m just deafblind, and that distinction makes all the difference in the world.
Kimberley Preugschat is a freelance writer
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