How to make life easier for deafblind people this awareness week - Steve Conway

This week we’re celebrating something that I’m really passionate about, Deafblind Awareness Week. If you’re reading this thinking ‘what does that mean?’ then this shows just how important this week is.
A woman with deafblindness takes a call. Image supplied by Deafblind UK.A woman with deafblindness takes a call. Image supplied by Deafblind UK.
A woman with deafblindness takes a call. Image supplied by Deafblind UK.

Despite what many people think, deafblindness actually means a combined sight and hearing impairment which is severe enough to affect how you communicate, get around and access information.

Deafblindness comes on a huge spectrum ranging from someone struggling to see and hear the TV right through to them not being able to see or hear anything at all.

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Lots of people who are deafblind can hear and see something, but it can still make everyday life extremely difficult.

Kelly, 39, from North Wales, describes everyday life as: “Like trying to do a 1,000 piece jigsaw puzzle without having the picture on the box – plus having a dodgy phone signal!

“I have to really concentrate to hear what people are saying and also to process what they’re saying so that I don’t sound too daft when I respond. It’s really hard to keep track of a conversation because you don’t have those visual clues about what the person might be feeling from their facial expression.”

Deafblindness affects people in all walks of life and in many different ways. But it is still something that many of us don’t know much about. This Deafblind Awareness Week we want to help everyone to understand what deafblindness is – and what it’s not.

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Let’s start to educate each other and normalise the conversation around sight and hearing loss.

Asia is a 23-year-old graphic designer from Hatfield. She is also deafblind. She said: “The lack of awareness around deafblindness is a huge challenge in itself. I frequently get told that I don’t ‘look’ deafblind – whether that’s because I don’t use a long cane or guide dog yet, because I use speech rather than sign language, or just because I’m ‘too young’ to be deafblind. It’s a common misconception that ‘deaf’ means completely deaf, ‘blind’ or ‘visually impaired’ means completely blind, or that ‘deafblindness’ is an older person’s condition. It’s a huge spectrum, and even people with the exact same condition may be affected differently.

“It’s so important to talk about and normalise the conversation around deafblindness. As a society, we need to erase the unnecessary stigma surrounding it and, instead, work towards raising awareness. My story is just one of hundreds of thousands of stories, and they’re all wildly different. There aren’t enough hours in the day to tell every story or to explore every variation of every condition, but something is better than nothing.”

So how can you make things a bit easier for someone who is deafblind?

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First of all, ask. If you’re not sure what to do, ask the other person what their preferred method of communication is. Don’t worry if you don’t know sign language or other alternative forms of communication. It’s much better to ask politely about what you can do to make communicating easier, than to miss out.

Think about the space you’re in – whether you’re at home or out, our spaces tend to have background noises and visual clutter that can make it harder for people who have sensory loss to communicate. So, try to reduce background noise and use good lighting.

Use clear speech – speaking clearly is a very effective and easy way of communicating with someone who is deafblind.

Introduce yourself – people who are deafblind might not recognise your face or voice so well. It can be helpful to introduce yourself clearly when you join a conversation with them. This way they know exactly who they’re speaking with.

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Keep your mouth visible – some people who are deafblind use lipreading to communicate. Lipreading relies on being able to see a person’s mouth, lip shape and facial expressions while they speak. If you’re speaking with a person who prefers to lipread the make sure they can clearly see your mouth when you’re talking to them.

There are lots of different ways you can take part in Deafblind Awareness Week – from sharing our videos to learning how to make life easier for people with sight and hearing loss. But whatever you do, try to learn something new about deafblindness.

There are lots of free resources available on the Deafblind UK website: www.deafblind.org.uk/intheknow

- Steve Conway is CEO of Deafblind UK.