I’ve been thinking a lot about school and the way that some students seem to skate through while other students work really hard for average (or below average) grades. These differences in ability are obvious to teachers and they are obvious to other students. Unfortunately, I think these differences also generate a type of stereotype threat. Students who don’t excel in the standard academic format begin to expect that they won’t. Neither teacher nor student learns to look for creative ways to demonstrate knowledge and learning. Neither teacher nor student learns to appreciate or respond to academic diversity.
Over the weekend, I did some light traveling to visit family. While it used to be pretty common for me to make an 8 or even a 12 hour drive, my body now can’t handle much more than a few hours. As a result, we’ve taken to staying at hotels for anything more than a quick trip to Portland or the coast. This trip was a good reminder of why disability awareness is still a huge need in the U.S.
We’d prepaid and after the clerk looked up our reservation, she says, “Would you like a room on the first floor since you have the cane?”
On the day of Zack’s memorial service, the sun was shining. I barely noticed as more than one hundred people gathered at the church. Some of them I knew, many I did not. There was a deep fog all around me that made it hard to breathe and hard to see. A fog that the sun could not cut through.
We’d planned almost every second of the service. It would be filled with music because that’s what Zack would love. Because we knew that Zack would rather have us celebrate his life and his laughter than gather his friends and family to weep. I was too numb to cry and my heart was too heavy to handle laughter.
Yesterday I watched an early episode of ‘Lie to Me’ where a couple has a missing child and Cal asks them, “Did you kill your daughter?” This is one of those things that parents who have lost a child at home don’t talk about. The feeling of knowing that this is what the police are asking, no matter how subtly they do it, is difficult to describe. For me, it went something like this:
We had been home from the hospital long enough to tell our three other children that their younger brother was gone. I was on the telephone with my sister when someone knocked at the door. I was numb. It was as though I’d fallen from a great height and couldn’t get air back into my lungs.
I used to tell the story of Zack’s birth often. It was a long answer to the question, “How did your son get cerebral palsy?” – a question we heard in a hundred variations, most of them spoken in soft tones of sympathy. Young children were the most likely to ask and they would ask in the most straightforward ways while their parents gnawed on fingernails in embarrassment. “What’s wrong with him?” they would ask.
“Well,” I would say, “when Zachary was born, he didn’t get enough air to his brain. That made it so that his muscles don’t work quite like ours do. He uses a wheelchair the way we use legs.”