Deaf Blindness, the often overlooked side character
Just like the second lead in K-Dramas, the not so well known disabilities deserve more recognition too!
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?
“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
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 problems with 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 on the regular, 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 others use sign language interpreters. Some people might need less assistance, and others 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 can deteriorate independently of each other over time.
Usher Syndrome
One to pick out in particular 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 hearing loss and retinitis pigmentosa (RP). RP at first usually causes night blindness, tunnel vision, and messes with your color perception. I say “at first” because it is a progressive dysfunction, and with anything that takes place on the retina, experiences will be very individual.
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. It can be congenital or progressive.
Resources
National Center on Deafblindness: Overview on Deaf-Blindness Factsheet
Assisitve Technology and Equipment Living with Deafblindness
Unique Technologies Presented at First Deaf-Blind International Conference
Although from 2014, Perkins School for the Blind has a great video on communication tech for deafblind people.