Monday, March 27, 2017

When is it okay to ask about someone's disability?

In honor of Cerebral Palsy Awareness Month, I'd like to share a little bit about my son's cerebral palsy and what it's like as a parent to field questions about it.

I met up with a relatively new friend for coffee a while back. She already knew that my 3-year-old son has cerebral palsy and that he recently started attending a special preschool, but she didn't know many details about him. She was curious and started to ask questions.

Would he have cerebral palsy forever? Would he be able to drive a car someday?

Then she backtracked, with a concerned look on her face. "I hope you don't mind that I'm asking these questions."

"Oh, no, I don't mind," I said, because the truth is, I didn't. I told her that yes, he'd have cerebral palsy forever (there is no cure) but that he would continue to gain new skills.

For example, he's currently learning to walk more steadily and to go up and down stairs. His cerebral palsy is in the mild-to-moderate range and is expected to stay in that range, which for him might mean that he'll master the stairs but will always need to hold onto a handrail.

As for whether or not he'll be able to drive someday, to be honest I don't know. What I do know is that I want to teach him how to take public transportation so that when he's more independent, he'll have that as a viable option.

He’s already learning, in fact.

Oliver on a train
Oliver at an elevator at a train station
The conversation with my friend got me thinking about when it’s okay to ask questions about someone's disability and when it’s not.

For me, personally, the answer is simple: Establish an emotional connection with me first, and then ask your question. 

If you’re a stranger on a train and the first thing you say to me is, “Is your son ill? He's far too old to be riding in a stroller," I’m not going to be open to talking with you. 

(This really happened. And my son was wearing visible ankle-foot orthoses, a.k.a. braces or splints, at the time, so it should have been obvious why he might need a stroller, without questions asked.)

If you're a friend or family member, though, or even a stranger who's made an effort to get to know Oliver and me a bit, and you ask about Oliver's disabilities with kindness, then I'm often happy to answer you. I like the idea of spreading awareness about disabilities and of helping people get to know Oliver a little better.

And when I'd rather not answer—because sometimes I need a break from thinking about his developmental delays and special needs and so forth, which often weigh so heavily on my mind—then I realize I can politely say, "I'd prefer not to talk about that right now."

(My poor mom has probably gotten this answer more times than she'd like!) 

Of course, I'm writing all of this from the perspective of a parent of a child with disabilities rather than a person with disabilities herself. I'd love to hear from those of you who have disabilities and from other parents of children with disabilities: 

When, if ever, is it okay for someone to ask you about your disability or your child's disability? 

Please answer in the comments below!

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