"Your disability/injury doesn't define you."

I hear this a lot, read it a lot, and I've thought about it a lot, as a disabled person.  And I've come to the conclusion that this is wishful thinking.

As much as I would like it that my hearing disability didn't define me, it does.

I used to play musical instruments - in particular the woodwinds and dulcimer.  I can still, to a very limited extent, play a dulcimer, but I can't tune it and I can't hear when it's out of tune. I once defined myself as a musician. Because of my disability, I can no longer make that a part of my definition.

I used to enjoy music and had amassed a wide ranging collection of music, from the classics to cybergrind. I can't hear most of this now, so I am no longer a music collector and lover. My disability shaped that part of me out of my life.

Ditto for movies - I can't hear a lot of the movie music, the things they say because they don't continually face the screen and I haven't found a single theater that does closed captioning on first run movies.  I have to wait for them to come out on DVD/Bluray/whatever home viewing medium gets developed so I can run the closed captioning option (which isn't always present and when it is present isn't always accurate).  My disability shaped cutting edge pop culture right out of me.

On line games are also difficult because so many rely on audio cues for various actions.

I can read about these things, and even engage in decent conversation about them, but I no longer have primary experience and that does, indeed, define me in ways I didn't want to be defined.

There are also many things I do now that I never would have considered doing before I was hearing impaired (mine was not a gradual hearing loss, but caused by traumatic injury).  One of the biggest changes, one by which I am definitely defined, is that I am now partnered with a hearing assistance dog.

Like it or not, having Itzl does define me.  I am "that girl with the dog" ("girl" still, even in my 60's).  

More, I have had to become a service dog advocate and spokesperson.  Everywhere we go, we are educating people on what it means to be partnered with a service dog, what our access rights are, and to deal with the negative and positive consequences.  I can't do anything, go anywhere, without having to build in time to deal with others stopping me to try to pet the dog, to talk to the dog, to tell me I can't have a dog there, to delay me in my ordinary, everyday business. I used to be able to shop for groceries in 15 minutes, now, I can count on it taking me 40 minutes or more. That defines me, like it or not.

Because I don't hear well any more, I don't respond to people talking to me if I don't notice they are talking to me.  That now defines me as "snobbish", "stuck up", and "aloof". Itzl has helped mitigate some of that, but since he is snobbish, stuck up and aloof, not a whole lot.  If he doesn't know you or doesn't like you, when you talk to me, he won't necessarily alert on it. He will alert on those he likes, the ones who call themselves his "harem". That defines me, like it or not.


I was reading an article the other day about a young man who was paralyzed, and he was claiming his injury didn't define him, but I think it did.  He was, before his accident, going to be working for a magazine.  Now, after his accident, is he working for the magazine and pursuing his pre-accident goals?  No. He's developing skin care products for paralyzed people, and  is an advocate for quadripelegics. He is, like it or not, defined by his accident. His life changed, and he's not doing what he'd originally planned, he's not the man he was, the man he hoped to be. His life now has been shaped and defined by his injury.

I have friends who have, over the years, had various major injuries that caused the loss of legs or hands or that caused paralysis, that have gone blind or deaf, and let me tell you - every one of us has been shaped and re-defined by those injuries.

Maybe we're better people for those, but they do define us. We are not the people we were before the injury, before the disability.

Originally posted to Noddy and Itzl on Wed Nov 14, 2012 at 08:48 AM PST.

Also republished by Pink Clubhouse.

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