The boys and I chose E.B. White’s first children’s book as our summer read-aloud selection. I didn’t really know what it was about, although I was familiar with it (I mean E.B. White only wrote 3 children’s books, and we’ve read the other two). I soon realized that the book is about a little swan born without a voice who learns to use alternative devices in order to communicate.
Well, of course as a mom I immediately started relating to my own little swan who has his own version of a speech defect and is learning to use adaptive communication. Throughout John Paul’s little life journey we are constantly witnessing his ability to adapt. And at times his adaptions actually become strengths. True, there is a lot that he is still unable to do (walk, for example). But in exchange for that he can drive around hairpin turns with a pretty complex piece of machinery. At age 3. True, he can’t form the thoughts in his head into words. But he listens and understands more than any of my other boys did at age 3.
So I found this little passage of the book, at a moment when Louie’s very verbose father is trying to console Louie about not being able to speak. He sub-consciously is trying to come to grips with the reality himself, for his is much more devastated by the realization that Louis is ‘defective’ than Louis ever is:
“Remember that the world is full of youngsters who have some sort of handicap that they must overcome. You apparently have a speech defect. I am sure you will overcome it, in time. There may even be some slight advantage, at your age, in not being able to say anything. It compels you to be a good listener. The world is full of talkers, but it is rare to find anyone who listens. And I assure you that you can pick up more information when you are listening than when you are talking.”
“My father does quite a lot of talking himself,” thought Louis.
His dad goes on to promise Louie that he will make sure Louis has the tools he needs to excel in his life. (Unfortunately that means breaking into a music store and assaulting the storekeeper to steal a trumpet, but that’s beside the point)
The point is, Louis goes on to make some pretty impressive accomplishments for a swan. After a while nobody really even notices that he doesn’t make swan noises.
At some point a year or so ago, I noticed that some people in the special-needs community used the term “differently abled” instead of “disabled” when referring to their children. I liked that idea – it seemed to fit John Paul perfectly. I guess I would much rather focus on the positive than on what he’s missing.
But then started seeing reactions and fallout about how the term is overly – politically correct. It claimed that saying “differently-abled” glosses over the reality of the disability and is like denying that the person has real difficulties. I suppose I see their point. I acknowledge that each disabled person has his own challenges, and that under certain circumstances, the term “disabled” really is a more accurate term. I don’t think using one term necessarily replaces the other.
I just don’t see it as a denial; at least not in John Paul’s case. On any given day, there is a good chance that John Paul will hear a comment or impertinent question (however good-natured) from a stranger that emphasizes the negatives of his appearance. (At the pool: a girl asks where his arms went, and after I give her an answer remarks, ‘oh, he’s one of those people. i’m sure glad i wasn’t born that way.’) It’s natural to wonder about his limbs, but it’s sort of astounding how often people feel it is okay to ask what’s ‘wrong’ with his arms, even though we are total strangers. (What happened to ‘hello, it’s nice to meet you?’ first?)
In other words, John Paul doesn’t need any reminders that he’s disabled. He doesn’t need anyone to point out that he’s missing some bones in his arms or that he does run around like his brothers. He knows. Tactless people remind us all the time. He might, however, need a little positive encouragement that he is wonderfully made. He might need us to reinforce the idea that he is a treasure, and that he can do things – he just does them differently. And if we use the term ‘differently-abled’, it’s because it’s the truth, not because we’re in denial or because we’re afraid of offending him.
On a side-note, this weekend the Wimbledon finals for mens’ and womens’ singles. What you might not have seen covered were the finals for the mens and ladies wheelchair doubles. I admit I didn’t even know these tournaments existed until yesterday. (You can watch highlights from last years’ final here to get idea of the amazing athleticism of these individuals) I don’t know about you, but the term ‘disabled’ doesn’t seem quite adequate here.
Anyway, I guess I’m kind of sounding like a bristling mama lion, but you get the idea. Everybody wants to be known and loved beyond what is initially, outwardly perceived. I would argue that disabled persons, on top of their own disability, are automatically at a disadvantage in this area because people don’t know how to or don’t want to overcome the barrier. The idea of interacting with someone who is disabled can be intimidating — you might not know what to say, you are afraid you’ll say the wrong thing, you don’t want to offend but you want to be sincere– and oftentimes taking the focus away from the disability and focusing on strengths eliminates that barrier.
After all, John Paul is a little boy, ultimately. He won’t eat anything green or anything mushy. He throws fits when he tell him no. He loves trains and cars and dinosaurs. He has a little blankie he likes to sleep with. And he just wants to be friends. He might not be able to run but he wants to have a race with you up and down the driveway. He might not be able to say your name yet, but he will listen to whatever you have to say.
We are not the sum of our weaknesses and failures. We are the sum of the Father’s love for us and our real capacity to become the image of his Son — St. John Paul