Disability has always seemed like a ridiculous idiom to me. An invented word for the regular people of the world who are uncomfortable by overt differences. It’s a label for the people who no one knows what to call. For when the typical person doesn’t know if they should awkwardly stare or hurriedly look away to hide their own discomforts.
It’s a nicety that doesn’t really sound very nice at all to me. Especially when Audrey recently used it to describe Annie.
Riding home from school, Audrey announced, “Annie has a disability. But that’s okay.” Nothing about that disclosure or definition felt okay at all to me, the disabled child’s mother.
Annie, unphased, wanted to know what a “dability” was and where she had it. Almost as if she’d just been told she was the secret owner of some unknown treasure hiding in her closet.
“It’s in your heart, Annie. Because your heart is sick. But it’s not contagious because you were born with it.”
Annie still didn’t get it. And I still wasn’t ready to respond to the new category in our home. I silently wondered where Audrey heard the term.
“Annie!” Audrey grew exasperated. “You know. Half your heart is missing. Remember?! That means you don’t have the same ability to do things that other people have. Like sometimes you can’t keep up with me running. Or sometimes you’re out of breath. And you have to take medicine. So that’s a disability.”
Through the rear view mirror, I saw Annie’s pensive eyes. I held my breath to see how she’d respond.
“Oh yeah. But my ‘dability’ means I’m way braver than anyone who doesn’t have one. I like having a ‘dability’ then. I don’t care if you’re faster, Auddie. I’m stronger.”
To my surprise, Audrey beamed. “I thought you’d say that, Annie. Disability means you don’t have the things other people have. You have something better.”
That night Audrey wanted to read the Joni Eareckson Tada story out of her missionary biography book. She remembered reading it before. And wanted Annie to see someone else who had a disability that made them stronger and braver.
A few days later, it was time for Annie’s weekly finger prick. She and I gathered the supplies from the kitchen cabinet. Annie loaded the pricking pen with the needle. Then inserted the test strip carefully into the meter.
Distracted by the preparation tasks and talking myself out of momentary anxiety, I hadn’t realized that Matt and Audrey joined us at the kitchen table. Matt placed his hand on Annie’s back to comfort her. She gave a wry smile and said, “I don’t need you, Daddy.”
She’s pretty accustomed to independently offering up her own pointer finger and plumping it for the right-sized glob. She wrapped a Barbie bandage safely around the prick and smiled at her audience. All done it seemed.
Until Matt had a suggestion, “Do my finger, Trace, so I can see what it’s like.” Annie looked up in shock! I wasn’t sure Matt would be the cooperative patient that his 4-year-old is. But I pricked his pointer finger anyway. “Ouch!” he said. Annie giggled. Matt wasn’t kidding.
The onlooking sister got the same idea. “Do mine, Momma! I wanna know too.” I have firm historical evidence that proves how terrible of a patient Audrey is so I really wasn’t up for this idea.
Audrey persisted. Annie coached her through. “First set out your band-aid. Then turn your wrist like this so your finger is free. Be very still. Mom won’t hurt you.”
I administered the prick and Audrey shrieked. She shot at me with angry eyes. “Ouch! Mom! That really hurts!”
Then she turned to Annie. “I’m sorry, Annie. Every week?!”
And there was a knowing. A sharing. A care that can’t happen before you’ve felt the prick. Before you’ve known the special ability that accompanies the details of a disability.
And there was a sister, a family standing behind our disabled daughter agreeing with her that what she has is something better.