In following up on yesterday’s “not a pity party” post, I would love to throw a few things out there that might makes this deafness stuff less confusing.
It’s been an eye-opening experience recently – to realize just how difficult it may be for others to understand my particular type of disability.
The first thing I learned about deaf people, is that not one of them is the same as another. I’m no exception to that rule.
I was born with normal hearing.
I spoke early (sentences at 10 months – Sorry Mom!), and was a voracious reader before kindergarten.
I began to lose my hearing at age 3 after suffering repeated bouts of chicken pox. My immune system crashed, and on my 4th birthday, I lost the rest of my hearing from viral nerve damage.
I am profoundly deaf… my audiogram would shock those who don’t know the extent of my loss.
I’d like to think that in my musical family, I could carry a tune before my hearing loss. Music has always been an important part of my life. When fitted with my first set of hearing-aids, the first thing this kiddo did was belt out “I’ve Been Working On the Railroad”.
My parents determined to do the best they could to ensure they could still communicate with me. I was enrolled in a total communication program – which included sign language, speech therapy, hearing-aids, lipreading, and sound recognition training (alarms, car horns, trains, dogs barking, any “dangerous” sounds, etc).
I finished school and college as part of a mainstream program with a sign language interpreter in most classes. I work without an interpreter, but will use a sign language interpreter at church if available. My mother and sister sign fluently, and often will quickly chat in sign language when we are out and about.
I’m sometimes asked where I’m from – usually people say my “accent” is east coast (which cracks me the heck up when I say “California” and they look at me blankly).
I cannot use the telephone. I use email and text messaging to stay in touch.
My balance sucks. If I close my eyes, I’ll fall over.
After4 years, I still put my hand on my son’s chest every night to make sure he is breathing.
People sometimes assume that a hearing-aid is a cure for deafness. But there is a difference between hearing a sound and recognizing it.
Being profoundly deaf means that without a hearing-aid, I hear essentially nothing. I wear the strongest hearing-aid available - and because I had a 4-year headstart of recognizing sound, my brain does a decent job using the input to help with the lipreading. But if you turn away from me, I am cut off completely.
Essentially the hearing-aid simply gives me an indication of sound. It is yes/no, not multiple choice. Meaning, I may realize that a sound occurred, but have no idea what it was or where it came from. This would be akin to a blind person recognizing that they are holding a book, but not knowing what it says or what language it is written in.
Especially as a mom, I rely heavily on context clues to help. If I see Itty Bit trot off in the general direction of the bathroom, then realize that a loud noise has occurred – I might want to check to ensure that he isn’t randomly flushing my makeup brushes down the toilet (again).
Whether a sound can be “heard” by me depends on so many factors: the surrounding noises, the volume, the pitch. People often assume I’ve “heard” something simply because I’ve caught a motion in my peripheral vision and guessed at the correct response.
One of my least favorite “symptoms” of deafness is the accompanying ease of startling. I am ridiculously easy to sneak up on if I am in an area that limits my vision or am concentrating. This is absolutely embarrassing on a professional level (I may not hear, but I sure can do a terrific movie-worthy shriek).
Please don’t turn away from me. If you look away while I’m replying, I look away too – trying to figure out what you might be hearing that I am missing.
Please don’t suddenly switch topics mid-sentence… so much of lipreading is guesswork, and it’s embarrassing when I’m still on the first topic and start getting those funny looks :)
Please pop into my view and wave… approaching from behind and tapping my shoulder will guarantee that movie shriek that I warned you about. You might need the hearing-aid afterwards…
Please, don’t stare if I sign in public. It’s a private conversation and while it might be cool to watch, it’s actually a pretty obvious form of eavesdropping, LOL. Not only that, but my sister tends to do this when she sees people staring:
Please, keep the lighting bright. Dim situations mean I’m deaf and blind… it’s hard not to be nervous.
Please repeat yourself exactly when I say, “what?” Often I’ve just missed one word and when you rephrase the entire sentence, I run the risk of missing more. Saying “nevermind”… hurts like heck.
Please don’t over-enunciate and talk to me like a widdle kid. OhMyLord, do you realize how hard it is not to laugh?!? And it actually makes it harder to lipread… so I’m guessing like mad while I have a case of the giggles!
So now you know… but you already knew I was different, right? Come on, ask away. Anything you always wondered how a deaf person handled?
Just don’t be surprised if I break into song or bust out a few Princess Bride quotes in the answer ;)