When People See My Daughter and Ask 'What Does She Have?'
A few months ago I was in the waiting room for an appointment of mine, and I had Bailee with me. She was in her adaptive stroller hanging out. As she has gotten bigger over the years, her disability is more clear, mostly because she is in a chair and not walking on her own. People notice; it is something different.
A nice woman was sitting near us, and she leaned over and politely whispered, “What does she have?” I knew exactly what she was referring to… what disability, disease, or condition Bailee has. I told her cerebral palsy, and she smiled and went on doing her thing. It was like she was asking if she had the flu, or a cold, or something, and it suddenly seemed chilly in there with that simple question.
What I really wanted to say was, “She has the best smile and cutest laugh! She has lots of friends at school and teachers who care about her. She has way too many stuffed animals (mostly because of that sweet smile; it always works.) She has a great attitude about life and always seems happy. She has obstacles, but she tackles them so much better than most adults I have met, and she keeps smiling throughout it. She has two parents who adore her. She has grandparents, great grandparents, aunts and uncles, and so many people in her life who do so much for her and who she touches in some way or another. She has a quirky sense of humor and tells the strangest knock-knock jokes (just pretend you get them.) She has dance on Saturday mornings. She has a kind heart and is very caring. She even has 10 fingers and toes!”
After I left, I was thinking about how the woman didn’t ask her name, but her condition. If a “typically” developing child was in there, she may have asked their name. Aside from asking someone how many kids they have, it seems we only ask what someone “has” when referring to a perceived problem, disease, illness, condition, or disability. I am guilty of it too. It is our curiosity.
I am OK with people wanting to know more about Bailee, but I just don’t like it being limited to a condition. That isn’t all of who she is. It doesn’t define her. It’s just a thing. So ask questions, but get to know the person too. Don’t stop interacting once your curiosity has been satisfied. There is more to a person than “cerebral palsy.” There is more to Bailee… and so many people who know her know this.