Stop "Looking Past" My Child's Disability
We’ve all heard it a million times--it’s what’s on the inside that counts. And certainly that’s true. Our kindness, our compassion, our personality--these are the things that matter most to those who know us best. But what’s on the outside--our skin, our faces, our bodies, our behavior, our way of moving, of communicating--these things are important, too. They are markers of who we are and how we experience the world. Beyond that, our outsides inform how others perceive us--whether they admit it or not--which in turn impacts their reflexive responses and judgments of who we are, and all too frequently, how they treat us. These perceptions reflect back on us, and suddenly the inside and outside are so inextricably intertwined, it doesn’t make sense to notice and acknowledge one without the other.
When people tell me they “see past Nora’s disabilities,” I know what they mean, because I see what’s inside her too--her shining spirit, whimsical humor, naughty impulses, fearless determination. Her insides are spectacular. But when I hear people say, “it’s what’s on the inside that counts,” in regards to Nora, I feel like they’re implying that what’s on the outside is somehow bad. Perhaps they’re referring to her uneven gait, her manner of communicating with sounds and claps, her medical equipment, her intellectual disability. I acknowledge these things may be unexpected to some, but there’s absolutely nothing wrong with them. They’re a part of Nora. They’re how she navigates the world. They are also why she’s far more tenacious than I’ll ever be, why she’s adaptable, why her smile is so warm and her laugh is so loud and why she shares both so freely and with such genuine love. These are the tools Nora has to be who she is, and she uses them beautifully. There is no wrong way to be a person. Nora leverages her outside and inside in tandem to live her life and do what she wants as best she can.
And, of course, her outside informs how others treat her and what they expect and believe she’s capable of, and that means she’ll be treated badly by those who don’t have the presence of mind to suspend judgment about her disability and to take the time to know and understand her. It means she’ll be made fun of, left out, unable to participate, segregated. Nora’s outside makes her vulnerable to indignities no person deserves. It’s important to acknowledge that and to be ready to stand by her, advocate for her, comfort her, and to help her through the pain ableism inflicts on the inside of a disabled person.
I know one of the hardest parts about “doing the right thing” is simply not knowing what the “right thing” is to do. Many have told me they’re afraid to say anything about Nora or about disability generally because they’re so worried they’ll inadvertently get it wrong. So, for those who might be wondering, the right thing is not to look past Nora’s disability or anyone else’s (unless they ask you to). It’s to look at it. To see it. To accept it. To find it beautiful if you choose to see beauty in diversity and differences. And also to imagine its implications on her life, and how it might impact how others treat her, and how that makes her feel. See all of Nora. The outside matters, even if it’s the inside that counts.