My journey as a parent of a child with a disability has been a series of blessings, mistakes and good intentions. I’d say the same about my experience as a writer focused on parenting a child with a disability. I’ve learned much in these brief six years; above all, I’ve learned there’s much more to learn.
I’ve also learned a little about grace and allowing myself time to learn. Life doesn’t offer a six-week night course in disability 101. Until I had someone in my life with a disability, until the experience became as personal as motherhood can be, I just bopped through life hoping to get it right, hoping not to offend anyone in general.
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Then I had my son Charlie, who has Down syndrome. Then my ears burned when I heard someone toss out the R-word. Then my legs wobbled as I stood, knowing I was prepared to speak out and not let the moment pass.
But holding my baby in my arms didn’t make me an expert on Down syndrome. Charlie is almost 6 years old now, and sometimes this journey — learning how to advocate for my son and all people with disabilities — feels like a never-ending graduate program with constant pop quizzes. I’ve definitely flunked some along the way.
Three years ago, when Charlie was barely 3, I wrote an article called “The Dissection of Inspiration Porn.” Inspiration porn describes when people with disabilities are called inspirational solely or in part on the basis of their disability. I meant well, and I can’t dismiss that essay now because I know fully that at that time, that’s how I felt. But personal essays are like diary entries, and who hasn’t cringed at one’s scribbles during puberty?
In this case, the sentence that now makes me cringe reads, “To the naysayers who scowl when a feel-good story goes viral, please keep your cynicism to yourself.” What I should have written was, “Please keep your cynicism to yourself, because I’m not ready to process what it means.”
My thinking evolved. My experiences broadened. Back then, I needed to see proof that my son could be included. Now, I want proof he is fully included for the right reasons: because he has that right.
Examples of inspiration porn abound. There’s the high school class that named a young man with Down syndrome as its homecoming king, garnering headlines about the students’ “compassion.” What if they just actually, really liked the guy? Then there was the undefeated wrestler who “let” another wrestler with Down syndrome win a match. When that young man is lauded as a hero, the message is that a person with Down syndrome needs to be given breaks to be happy and that winning is everything — or at least a way to make this young man with Down syndrome feel like he belongs.
You might remember a story out of Nashville earlier this year. The local ABC affiliate reported: “Robert, who has Down syndrome, got to suit up and play with Franklin Road Academy’s basketball team… With just five seconds left in the game, Robert’s school was leading, 61-47. A teammate passed the ball to Robert, who was waiting beyond the 3-point line. When Robert sank the shot, cheers filled the auditorium. As the clock ran out, students rushed the court and hoisted Robert on their shoulders.”
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Was this a moment of a lifetime for Robert? Maybe. An earlier version of the story reported Robert’s basket won the game. Perhaps the reporter or editor couldn’t believe such hullaballoo could occur over a shot that didn’t win the game?
Robert’s coach told one media outlet: “If we’re ahead comfortably or behind and kind of out of the game, we’ll put those guys in at the end of the game.” By “those guys,” he was referring to Lewis and the other team manager, who also has Down syndrome.
What if Robert had been “allowed” to play all season? What if he had been fully embraced by the team and encouraged to hone his skills and contribute — every single week? Instead, he was designated “team manager,” a role that stays benched. Finally given a chance to play, he nailed a three-pointer and the arena went nuts.
When videos like this go viral, they reinforce the message that people with disabilities need the mercy and charity of typically abled people to be happy and succeed in life.
Robert might have landed a three-point shot in every single game that season, but we’ll never know. He wasn’t given the chance. His coach presumed he wouldn’t. Then they all patted themselves on the back when their momentary allowance — for Robert to participate as a full-fledged member — paid off in the form of an accomplishment.
The whole scenario reeks of ableism — a term I didn’t know until only a few years ago. Ableism is the discrimination in favor of able-bodied people. Ableism says someone without disabilities is the norm or the standard, and perceives anyone different as less than. “An ableist perspective asserts that it is preferable for a child to read print rather than Braille, walk rather than use a wheelchair, spell independently rather than use a spell-checker, read written text rather than listen to a book on tape, and hang out with nondisabled kids rather than with other disabled kids,” writes Thomas Hehir in an essay titled “Confronting Ableism.”
Now I know better. Just as I’ve spoken up when I’ve heard someone say something hurtful and ignorant, I will speak up when people do something that’s all about making them feel good — and isn’t that the essence of inspiration porn?
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Last week, I sobbed with joy as I watched Charlie’s very first musical production as a kindergartner. He was surrounded by his peers and as proud as could be. We fought so hard for him to attend our home school and learn alongside his peers in the general education classroom. I was overcome by happiness to realize this was the success we strove to achieve.
Parents I barely knew sent me photos of Charlie dancing, clapping and singing away. No one said, “He’s such an inspiration!” Rather, “He had so much fun!” The joy on his face was all-consuming and spread through the auditorium. He deserved that fun. He deserved to participate. He deserved to be a part of the group.
He also deserves to be allowed to succeed and to fail. His partner onstage was the music teacher, and she guided him skillfully through the two-minute performance. She is the same teacher who has expertly wooed him from the car at drop-off in the mornings by putting him to work carrying her crossing guard stop sign. She gets it. He wants to belong. He wants to contribute. And let’s face it, he also wants to sport the shiny, bright-red sign that makes everyone freeze in place.
Next time, I hope he can participate with a classmate as his dance partner. Will it go smoothly? Maybe not. But we’ll never know if he’s not given the chance to try. The effort will be the success, and I will celebrate that success.
Charlie doesn’t inspire me because he has Down syndrome. Charlie inspires me because he will firmly grasp any opportunity to sing, dance and beam. He inspires me because when he unravels people’s expectations, he changes the world. Sometimes, I can see it transform before my eyes.
A dear friend and fellow parent of a child with Down syndrome once made T-shirts with the directive, “Presume competence.”
Amen.
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