Sometimes it’s hard for people to know how to react to disability. I know what that feels like; before Lilly was born, I had no experience with disability, and didn’t know how to react, either. There’s a fear of offending, a discomfort in the face of the unfamiliar.
This became apparent to me as I started to bring Lilly out in public with her AFO’s, in her walker, or in her stroller chair, obvious signs that she’s not a “normal” kid.
I remember strolling her down the street one day when she was about 2 or 3 years old. We passed a man with another girl who was maybe the same age as Lilly. As we passed, the girl-displaying a child’s natural curiosity-pointed her finger at Lilly’s braces and said, “What’s that?”
“Hey, don’t ask that,” the man quickly scolded. “That’s rude.”
“It’s okay.” Addressing the girl, not the man, I said, “She just needs help walking.”
“You see,” the man went on, bending down a little to lecture the girl. “That’s why you should feel grateful. Some kids aren’t as lucky as you are.”
“It’s okay,” I said again, forcing a smile, appalled at the man’s behavior. “She’s doing fine.”
Instead of using the incident as a learning opportunity for his child, he made her feel bad, embarrassed me, and perpetuated the flawed idea that anyone with a disability should be pitied. Luckily, Lilly was young enough to not really understand the situation, but I often wonder if I should have spoken up and corrected the man instead of giving in to my instinct to be polite.
Probably. I didn’t, not only because of the good job my mom did in raising me to be a “nice” girl (perhaps she did her job a little too well), but because I knew his reaction stemmed from ignorance and his inexperience with disability.
Contrast this desire for Lilly to be treated equally to making sure her needs are met at school and other places. I often wonder if I’m being overprotective, if I’m being “that mom” in calling or emailing her teacher whenever I think Lilly is getting short shrift because of her issues.
For example, should Lilly miss out on morning snack because she’s with the nurse getting cathed? Should I push for a para to help her zip her coat at recess and open her milk carton at lunch, or should I push Lilly to speak up and ask for help? I have encouraged Lilly to speak up, but until she finds the courage to do so (unfortunately she’s shy like her mother), she’ll be cold at recess and thirsty at lunch.
I’m not sure what the answer is. It’s a delicate balance between meeting her needs, encouraging her independence, and educating those around her.