"Why is that the title?" my son inquired, with the guttural sound of exasperation so characteristic of the preteen.
He was reading the proofs of my essay "Silver linings," which appears in the most recent issue of Stanford Medicine. The essay is about all the remarkable people we’ve gotten to know because my son has cerebral palsy. The headline, though, stirred indignation in someone with a fair amount of disability pride. "It's not a bad thing!" he said.
He's right. It's not. And if there's one thing I've tried to inculcate in him, it's that disability is a natural part of the human condition. One reason I write about disability is to try to lessen its stigma.
Part of the reason we're so scared of disability, I believe, is that we know being able-bodied is temporary. We're all just one car crash or one illness or simply one long, well-lived life away from being unable to ambulate or care for ourselves or communicate. And deep down, we understand that, and it frightens us.
The people who work with children with disabilities understand that, too, but they respond with empathy and selflessness. They stretch cheeks and tickle tongues without a thought to the inevitable drool or potential vomit. They worry that a 2-year-old might take his first steps while they are on vacation. They put their career plans on hold because they want to see a child through preschool.
More than 80 people have invested in my son, from augmentative communication consultants whose caseloads are full of kids like him to classroom teachers who couldn't have defined CP before my son wheeled through their doorway. I describe a few of them in my essay:
The speech therapist who had to hand him over to the school district at age 3, and couldn't call me to debrief her final session because she was crying so hard. The first-grade teacher who tried to transfer to second grade, just so she could watch over him for another year. The pediatrician who sat shoulder to shoulder with me while we phrased justifications for durable medical equipment that would pass insurance muster. The fifth-grade teacher who wrote to my son, at the end of the year, "Thank you for teaching me." The classroom aide who stayed by his side for nine years, from preschool through sixth grade, tweaking everything — his desk, his pencil case, his lunchbox — so he could access them more independently. (She's not accompanying him to the hormonal milieu of junior high, though. We all have our limits.)
The physical therapist who named her son after mine.
I explained to my son that the silver linings are not his, but mine. And he immediately understood that.
Previously: Ties that heal: Stanford Medicine magazine examines relationships, Navigating a rare genetic disorder with a positive attitude, Cheri Blauwet, former med student and elite athlete, shares her story and In motion: Accessible Icon Project moves forward
Photo by Timothy Archibald