After Oscar was born with Prader-Willi syndrome we found ourselves reminding people that he was, first and foremost, a little boy. Not a diagnosis. It amazed me how many doctors and therapists and even fellow parents would talk about children and adults with this disorder as Prader-Willis.
“Well, you know Prader-Willis, they’ll drink the salad dressing if you let them.”
“Shoulda known it was a Prader-Willi locked in the bathroom all that time."
As the parent of a little baby, this language angered me. It implied that the children who had PWS were defined solely by PWS. But I too struggled in the first few months to separate Oscar from his disorder. Lying awake to the chant Prader-Willi, Prader-Willi echoing in my head, night after night while Oscar slept in the bassinet beside me, I admit that his diagnosis really did define my relationship with him at first. But I still never called him a Prader-Willi. His name was Oscar. I was clear about that.
Over time I’ve loosened up a bit. I still run into doctors and other parents of kids with PWS who use this language, and while I still don’t like it, I usually let it go. It no longer threatens my perception of who Oscar is – an engaging young boy who happens to have PWS. If I can, I use “people-first language” in their midst and hope that they pick up on the difference.
Lately, though, I have been astounded at the many comments doctors, therapists and other parents of kids with PWS are making about Oscar right in front of him. Comments that could cause Oscar anxiety or chip away at the self-esteem we’ve worked so hard to build. Comments that threaten Oscar’s trust in our food security plan. Comments no ten year old should have to hear. Comments like:
“Wow, he’s really not that flexible!”
“Is he getting into the food yet?
“He’s looking thin. I think we might need to increase his calories”
“Come on people,” I want to say. “He’s right here. He can HEAR you.” But I can’t say that in front of Oscar. Instead I pointedly raise my eyebrows and deflect the comment with a supportive statement about Oscar. If I can, I send Oscar off on a quick errand so I can address the person directly. And mostly they get it. Mostly.
But as my husband asked just the other night, why can’t people just remember that he’s a boy, not a specimen? Is that really so hard?
Mary blogs about life with three children, including Oscar who has Prader-Willi syndrome, over at Finding Joy in Simple Things.