Click here to watch the TEDTalk that inspired this post.
Months ago, I read a Facebook update from a young woman with cerebral palsy:
"So I am at the grocery store doing my errands, minding my own business and some random lady comes up to me and asks about my leg and back brace. I explain that I have cerebral palsy and few other conditions that require such tools. She then goes on to explain that her kids also have CP, and I am inspiration to her that I have graduated from college and am independent. I am far from inspiration. I am just doing what I need to do to live my life."
I knew what she meant. But as the mother of a child with cerebral palsy, I knew what that mom meant, too.
In the past year I've read a lot about "inspiration porn," a term coined by Stella Young that she describes in her recent TED talk. One of the things I want most for Max is for others to see all of him, not just his disabilities. To see the person. Inspiration porn turns kids and adults with disabilities into fantasy heroes, further widening the gap between them and others.
And yet, on my blog, I am always gushing over Max's feats. Even the smallest accomplishments are a big deal to me, like when he pours paint out of a container (fine-motor skills are a challenge) or steers a bumper car at an amusement park. I share because I am proud of Max, and because I write to inspire other parents. Years ago, when Max was born, there weren't many blogs around, and all I could do was message other moms on an e-loop for parents of babies who had strokes to ask how their children were doing. When did their kid crawl? Walk? Could their child talk? How was his cognition? I needed to hear that there were kids doing these things and making progress, because doctors hadn't left us with much hope. Now, when I get emails from parents saying that Max is inspiring to them, it makes me seriously happy.
And yet, there are times when people who don't know our family or Max marvel over him, and it makes me uncomfortable. Once, Max was splashing around in a pool, and a mom standing nearby said, "I just wanted to tell you, your son is amazing." I mean, I know that, years ago, he was terrified of pools, and he overcame his fears. Years ago, he couldn't keep his balance, but now he ambles around in the water, but she didn't know all that. She just saw a kid with disabilities splashing in a pool, seemingly qualifying him for an Olympic medal.
And yet, I find inspiration in teens and adults with cerebral palsy doing everyday things. Ones who write blogs, go to college, have jobs, live independently. If I saw an adult with cerebral palsy in a pool swimming, I'd be psyched. I am inspired because of the hope they give me that Max will do the same when he is older.
I hope the adults with disabilities out there like Stella Young who rightly rail against inspiration porn can cut parents of kids with special needs a little slack. I don't mean to objectify you when I gaze admiringly as you browse in the bookstore (although rest assured, I wouldn't come up to you and gush), or when I tweet to an adult blogger with CP that I find her inspiring. I don't see your life as an "exception" -- actually, I want my boy to someday have your life, the kind where he does everyday things like shop for groceries. If I consider your ordinary extraordinary, it's only because I am looking at you and envisioning my son.
Ellen Seidman blogs daily at Love That Max. Read more from her:
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