People who are deafblind respond to five common myths about deafblindness
There are at least 450,000 people who are deafblind in the UK. And this is expected to increase to over 610,000 by 2035.
To gain some insight into their experiences, we spoke to some people who are deafblind to find out more about the myths and misconceptions they’re sick of encountering.
Find out more below from:
- Max Fisher, scientist, drag performer and activist.
- Ian Treherne, portrait photographer.
- Emma Blackmore, fundraiser and campaigner for Sense.
“People who are deafblind can’t communicate at all”
Max: “No one knows how to communicate with each other all the time. Everyone who is deafblind is so different. I don’t always know what is the most accessible way to talk to someone else who is deafblind, so I just ask. I also ask people that are not deafblind, ‘How’s the best way to communicate with you? Is it via email? Do you want to hop on a Zoom call? Should I just text it to you?’ It’s different for everyone, not just deafblind people.”
Ian: “People make very quick assumptions and write you off very quickly. They just freak out.”
“When you’re deafblind, your other senses are superhuman”
Emma: “I can’t smell through walls or anything like that. I couldn’t smell what’s going on in Tesco over the road, or the other side of the city.
“It’s a case of, you rely on the other senses a lot more. Like, people who are hard of hearing or deaf, they rely on their eyesight a lot more, or the other way around. If you’re both, you rely on touch or smells. I’m very sensitive to a lot of smells. Where I work, sometimes if it smells like someone’s had a very bad time in the toilet, shall we say, I need to go to the other side of the building, because I can’t cope. I get overwhelmed if there’s a lot of smells or a lot of noise going on. But I’m no superhuman.”
“‘Deafblind’ means you’re completely deaf and completely blind”
Ian: “Society just thinks ‘blind’ must mean ‘total blindness’. So when I say I’m ‘visually impaired’, I wish I could just say ‘blind’. But I know that I’m still kind of educating people… so I say ‘visually impaired’. People say to me, ‘But you can see this, and you can see that.’ And it’s like, ‘Well yeah, I can, but I have 95% black, and a very small window. So yeah, technically, I can see, but it’s not very much.’”
Max: “Every disability that I can think of exists on a spectrum. Deafblindness, to me, is a spectrum. In my personal experience of deafblindness… I’m on the mild end of both vision impairment and hearing loss. But then I also have tinnitus and severe audio processing disorder on top of that, so I actually function further down the spectrum. And I also have a visual impairment called visual snow syndrome, where everything is dancing all of the time. I’m light sensitive, I’m night blind, and things move when they’re not supposed to move. There’s just such a wide spectrum, and not always one condition or diagnosis.”
“You don’t look deafblind”
Ian: “People in society have this sort of general template of what a deafblind person looks like. I’ve found it tends to be someone with dark shades on, a guide dog, a white cane. That’s kind of like a starter pack. Generally I’ve found that unless you look like that, then people think you must be ‘normal.’”
“People who are deafblind can’t use phones”
Max: “I’m night blind, so I use a cane when it’s dark outside. I also have a useless sense of direction. So I’m there outside, navigating the ground with my cane, and I’ve got Google Maps on my phone at full brightness. And everyone is like, ‘Hang on a minute. You’re reading your phone, but you’ve got a white cane.’
“It goes back to the whole: ‘You must not be able to see anything.’ It’s very much a spectrum of what I can and can’t see. I can’t see where I’m going in the physical world, but on my little phone with Google Maps, I can see roughly where I am. I can brighten the phone screen, but I can’t turn the sun back on!”
It’s Deafblind Awareness Week
From 26 June – 2 July 2023, we’re helping to raise awareness about the thousands of people living with deafblindness in the UK.
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