Deaf blindness

When you hear the word deaf-blind, you might think “How do you communicate then?” And if you have ever studied anything related to communication, I’m sure your old professor is haunting you right now with Paul Watzlawick’s “One cannot not communicate” with that uuh spooky echo uuuh.

But it’s still puzzling, right? Blind people usually rely on their hearing and deaf people use sign language to communicate. So how are deaf-blind people making it work?

How can deaf-blind people see and hear?

We have already established that blindness is a spectrum. Okay, let’s rather say vision is a spectrum, and legal blindness is further on the low vision side, but it still leaves a lot of leeway. Low vision can include things like tunnel vision, color blindness, night blindness (or nyctalopia if you feel fancy!), and stair blindness, which is more of a consequence of issues in contrast or depth perception.

Too long didn’t read: A lot of different things can make up blindness, and legal blindness isn’t total blindness.

Now I don’t work with people who are deaf or hard of hearing in particular, so I can’t make a blanket statement about it. But after a certain amount of desk research and by using some Detective-Conan-level deduction skills, I would make an educated guess and say that it’s also kind of like a spectrum. Or should I say, a volume slider? Actually, more like an elaborate surround-sound system where you can configure every detail.

One of my Hope Tech interviewees who happened to be deaf-blind described their hearing loss “as if the high-pitch of a stereo had been turned off”

I feel as if I’m starting to repeat myself in these posts, but disability is a spectrum. Not everyone is living in complete silence and complete darkness. Some use hearing aids and or glasses, as Blindish Latina does, some use a white cane and braille, and some use sign language interpreters. Some people might need less assistance and some might need more.

Causes of deaf-blindness

If you go to Wikipedia (my previous professors are shaking in their tweed jackets right now), you will find a long list of potential causes. It’s also perfectly plausible that your eyesight and hearing independently of each other deteriorate over time.

But one to pick out is Usher Syndrome. If your mind immediately goes to the singer Usher Raymond, that’s okay. This article will wait here while you go jam out to Yeah Yeah. Back? Alright, let’s go!

The main symptoms of Usher Syndrome are deafness or hearing loss and retinitis pigmentosa. RP usually causes night blindness, tunnel vision and messes with your color perception. Again, what exactly this can look like is completely individual, and the same goes for how fast it progresses. The hearing loss is caused by the abnormal development of the sound receptor cells in your inner ear.

“Deafblindness is an invisible disability because there is no way we can know how a person perceives the world unless we ask.”

Dr Leda Kamenopoulou, Associate Professor at UCL