Tuesday, December 30, 2008

The One Where I Actually Talk About Something Related To My Disability

So we three went shopping this weekend and pulled in to park in one of the handicapped spots in the store parking lot. Sweetie seemed to proudly declare, as Hubby turned off the engine, "The handicap spot!".

"That's right." I said. "We always get to park in the handicap spot.

Then I went on, asking her:

"Do you know which one of us has the handicap?"

To which Sweetie - probably too quickly - answered:


"No. Not Daddy."

Sweetie took another few seconds before cocking her head, shrugging up her face, and asking:


"Yep. That's right."

Then Hubby asked her if she even knew what handicapped meant. No, she said. She did not.

By then we were getting out of the car and Sweetie walked to the front of the car, pointing to the sign, telling us - "This is the handicap sign. That's what handicap means."

Ah... no. No it doesn't.

I really wanted to pursue this line of questioning, this informative discussion. But at that point we were hustling into the store, trying to hurriedly dodge cars and get in from the cold. Then it was all about getting through the store, finding the things we needed as efficiently as we could. No time for meaningful discussion of any type. 

And then, by the time all that was through, of course the whole thing was forgotten. Even if the conversation was remembered by any of the three of us, it certainly, by this point, was too far removed from the original discussion to easily bring it up again with any kind of smooth transition.

That is to say - that was it. Nothing more has been said about what the word "handicapped" means. Why I'm the one among the 3 of us who is handicapped. Nothing. It is, again, a non-subject.

I suppose here is when I should make clear that I'm aware that "handicapped" is not the most PC term. "Disabled" is preferable. I personally don't mind either way. In fact, to say I'm "disabled", to me, literally translate to "unable" to do something - but the "something" is not defined. So, in essence, it's as if that term is stating that the "disabled" person is just plain "unable" to do anything. And I know I can do lots of things.


Sweetie obviously does not know what "handicapped" means. She knows that Daddy's license plate has a symbol on it that exactly matches the symbol on the signs in store parking lots. And she knows I have a hanging sign for my review mirror with a matching symbol. She now has been told that I'm the one among us that is handicapped. But she doesn't even know if that's a good, bad or indifferent thing to be.

(For the record - I think, and Sweetie will grow up to think - that "it" is an entirely indifferent "thing.")

Not that Sweetie is totally oblivious to my physical differences. She, of course, is completely aware that I wear leg braces and walk with the aid of a walking stick. She knows I often were a back brace (not that anyone out there - disabled or not - can't be helped by wearing a generic drug store back brace if need be). She certainly has noted - consciously or not - that my gait is way different than most people she's ever been around. But she has never - and I mean never - looked at me or treated me any differently than any young child treats their parent.

Sweetie knows - and has known ever since she was a baby - that I cannot lift her up. She knows that I not only want her help with chores in order to teach her responsibility, but - more exactly - I pretty much need her help; taking piles of laundry up the stairs, distributing them to the correct bedroom. 

Sweetie, on more than one occasion, has even seen the T.V. commercials for the Hoveround (and other like walking aids) and has helpfully mentioned to me: "Mama - you could use one of those. You should get a Hoveround."

But she does not think of me as "different." Even though we've never directly discussed it, I know this to be true. I am just Mama. That is all - nothing more, nothing less. 

Sweetie sees me - not my disability. As far as I can tell, my disability doesn't even register with her. Why should it? It doesn't affect the way I love her. Why should it affect the way she loves me?

Heck, I don't even think about my disability most of the time. The only time I really notice my differences, quite honestly, is when I'm around others who aren't comfortable with my differences. For instance, when I'm out and about in public and all the little kids - you know, the ones that are just about Sweetie's age - stare at me as I approach and walk by. They even turn their head and continue to watch me as I walk out of site. To them, I am... interesting. Very different. Something like they've never seen before.

Funny. Sweetie doesn't stare. Well, obviously she doesn't stare at me. But not even other people with disabilities that she's seen out in the world. Random people in public, going about their days. Members of the Spina Bifida Assoc. of MA - an organization I belong to - that she sees once or twice a year - large gatherings of people just like me. Some much "worse" than me, some not so "badly off" as me (I really don't like those qualifying terms). She could care less. She doesn't ask questions. She doesn't appear to feel awkwardly different. She just plays, makes new friends, and enjoys her surroundings.

I wonder if the "handicapped" discussion will come up again. I wonder if it really needs to. I'm not sure, but I wonder how much of a "discussion" my parents had with my older brothers when I was born concerning what was "wrong" with me (well, they must have told them something! Because obviously I needed to be in the hospital for a long time). Likewise, how much - if anything - did my nieces and nephews directly learn about my disability from their parents? Or did just growing up around me - much like Sweetie's experience - simply make my differences more or less a non-issue for them as well?

We all have our differences. Heck! Each and every one of us has some sort of "disability", whether big or small, physical, mental or some other sort of "quirky" thing. So why should my physical disability (or anyone else's, for that matter) - when you think about it - make any sort of difference at all?

That's just it. It doesn't. It absolutely doesn't. I am who I've always been. Some of my personality traits - maybe more than I'm even aware of - have been formed around my personally perceived differences to the general population. But they are my traits. How I've always been. Everyone else in the world has had experiences unique to them that have helped to form who they are as a person. That's what makes you, you.

We are all unique, all different, but all important and valuable individuals. That is what I know to be true, it is what Hubby believes, and it is the innate life lesson that will be instilled in Sweetie.

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