Tuesday, October 22, 2013

Sun and grand-daughter


I wrote this for Texas School Business magazine, for whom I'm a regular columnist and reporter. Since then, Evie has been fitted with hearing aids and is progressing fabulously. She will be here Thanksgiving, and I plan to make sure she hears "A Hard Day's Night" at least a dozen times.
There is little chance Simon Sun will try out for football or any other sport inasmuch as he suffers from cerebral palsy, and it’s a struggle for him to talk let alone walk, but he’s determined to live as normal a life as possible, and his efforts to do so are nothing short of heroic.
I’m thinking about Simon a lot right now. He was one of the best students in an advanced writing class I taught this summer at Michigan State. I was notified beforehand that he had signed up, and I received a copy of a letter his father wrote, asking that we be patient with but not coddle him.
“He is 16 and will go to college,” his father told us. “He needs to learn how to get around on his own.”
So, we helped when Simon needed it and were patient as he struggled to ask a question or explain how he thought an anecdote might be used or how a descriptive phrase might be teased.
But it was tough. At first, I couldn’t understand him. His words seemed a jumble of honks and squawks, and I felt guilty being unable to decipher them, of pretending that I could. Several times, I interrupted him with responses to questions he didn’t ask, and I hoped — assumed, actually — he wouldn’t notice the difference.
I committed the cardinal sin of teaching: I defined Simon by his disability, not his ability. And then, I read his personal opinion column. He cranked it out in about an hour, and I suspect he has wanted to write it for a long, long time.
Here are a few excerpts:
• I’m trapped in my own mind. At least, that’s how it feels. As one who is physically disabled, it’s constantly a struggle to breathe before I suffocate in my thoughts. Almost no one listens to what I have to say. Or, if they try to listen, many can’t understand me. It’s as if I don’t exist.
         • What irks me the most are not those who ostracize me. Instead, it’s those who insist on helping me. I fully understand that they’re just being nice, but when I’m treated like a 5-year-old or a sick puppy, that’s what I hate. I don’t need my hand held as I walk through society. I’m 16, and I would like to be treated as such.
• While we’re at it, don’t call me “buddy.” I’m not your buddy. I don’t even know you. It’s as if you’re talking to a dog, or a scruffy little kid. Call me “friend.” “Bro.” Say, “Hey, man” as I pass you in the hall, not “Hey there, little buddy.”  I’m not Gilligan.
• When I try to speak, I either get ignored or interrupted. I’m not sure whether I’m just not loud enough or whether the others don’t have the patience to really listen to me. I want them to know what I have something to say, but it’s frustrating. My thoughts are caught somewhere between my brain and my mouth, and so, I’m trapped, trapped in my own mind, suffocating in my own thoughts. But let me tell you something. I exist. And I will be heard. Somehow. Some day.”
I’m thinking about Simon a lot now because my wife and I recently learned that our 20-month-old granddaughter, Evelyn, is mostly deaf, and there's a chance she could lose what little hearing she has.
I’ve not had time to process this, and I’m not sure when the reality of it will sink in. Soon enough, I suppose.
It’s ironic. A couple of months ago, I wrote a snarky piece about how the U.S. Justice Department's Office for Civil Rights had reminded school districts that they were obliged to provide students with disabilities equal access to extracurricular sports.
I contacted the UIL and a couple of athletic directors and coaches and asked if this changed anything, and they assured me it did not. I had no reason to doubt them, so I glibly dismissed it all as another case of government run amuck.
The piece never saw the light of day though. I shared it with my wife, and she hated it, so I dumped and forgot about it.
But now, this.
As I begin to imagine all that Evelyn might miss — the opening chord of “A Hard Day’s Night,” a thunder clap, a kitten’s meow  — I hope the chance to play high school sports isn’t among them. I hope she’s defined by her ability, not her disability.
I hope too that you think of Simon and his determined heroism when you encounter another young person with a disability. Please be patient with but don’t pander to him or her. I ask this of you because one day, that young person might be my granddaughter.