Last week with my daughter Jillian at my side a store clerk asked: "Can I ask what's wrong with her?" Seems like an honest question, right? When you're raising a child with a disability, you'd be surprised at the questions that are lobbed in your direction. Normally they're innocent, but whenever we go out as a family, we're regularly asked a barrage of questions.
My daughter Jillian is five-and-a-half years old (above right). A little spitfire of a little girl. I always knew she was paying attention whenever I answered these questions but what I didn't know was that she would take matters into her own hands.
Last week my husband was due for a phone upgrade so we headed to the mall. Jillian is enjoying independence in a chair she can self-propel. She was full of giggles and laughter as she threatened to run away from us. When Jillian was within earshot, the agent at the phone kiosk looked at me and said "Can I ask what's wrong with her?"
"...You could..." I replied. It was then that Jillian decided to speak up for herself. "What's wrong with you?" she asked. I wasn't sure how to proceed. Surely I should apologize for her, or do I? The question was posed innocently, so why did I feel embarrassed? Jillian had a point.
The agent at the kiosk said "I deserved that." So I was left wondering what do I do about this? On one hand, I'm so proud of my little girl for standing up for herself. On the other? I really would have hoped she would have picked up a little bit of manners to answer these questions.
It's times like these that I'm reminded Jillian is only five. Children at that age have little filter. I should know, I also have a typically developing older daughter, Lauren, and at seven she's just now realizing about filters.
I'm proud of Jillian for realizing she can stand up for herself. Maybe she'll show people that they shouldn't assume things about children in wheelchairs or children with disabilities in general.
This isn't the first time Jillian has been an advocate. At the ripe old age of three-and-a-half she was involved in the Children's Advisory Council at Holland Bloorview. We learned there that she never went into the ball pit because she didn't want to ask for help to get in and out. I had just assumed she didn't use the ball pit because she didn't like it. I realized I shouldn't make assumptions about her either. Because Jillian spoke up, there are now foam steps and wedges that allow kids like her to crawl into the pit on their own.
Did I handle the above question correctly? I'm still left wondering about it. In the mean time, I'll be proud and explain to Jillian that maybe next time, we could be a little bit more polite and understanding when people are asking questions.