Please treat my daughter like she?s human
The wheelchair mechanic knocks at the door. My husband answers, and a hefty man wearing steel-toed shoes comes through our kitchen carrying a small tool box. I?m in the living room, strapping on my five-year-old daughter?s orthotics. The mechanic stands beside her empty wheelchair, which has been waiting in the dining room.Â
?Do you need anything from us"? I call out, pulling the laces of her shoe tight.Â
?Just the passenger,? he says gruffly.Â
I hurry up, and when my daughter?s all laced up, I lift her to her feet and send her over. In a thump-thump rhythm of deliberate, confident steps, she walks to her wheelchair, a lean, glimmering machine custom-made for her. She almost never uses it now that she walks, but when she needed it once this past year, her legs looked cramped. So the mechanic will tweak it. He looks down past his belly to my 39-inch kid. Although she eats her weight in cheese, she?s very thin, just over 20 pounds, and a full head shorter than typical kids her age. ?Hi there,? he says in a pitch people usually reserve for chihuahuas.Â
I get up from the carpet. I?m going to have to do the thing. It?s a thing I don?t always even realize I?m doing in the moment, and yet it?s a thing I?m compelled to do with regularity. I?m going to have to go and show someone that my kid understands, that she?s not a dog but a human.Â
My daughter, who has a rare chromosomal deletion, is largely nonverbal, and the words she can say aren?t usually intelligible to people...
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