I was reading for fun. I’d put the day to rest, put the to-do’s aside, backburnered my own writing projects and the calls I needed to make for Fiona’s medical care and the worries I catalog (many of them lately about her spine). The window behind me was dark. The video monitor showed Fiona fast asleep. Those weird whale sounds that play from the stuffed sheep had lulled her. The whales were still moaning, and I was reading for fun.
And then, out of the blue, I read something that felt like a punch in the stomach.
I was reading an anthology about parenting. The collection had been smart, witty, moving, all the things you expect. I was midway into an essay about why the writer doesn’t want a child. I was punched unexpectedly by this:
“The list of possible disasters is staggering: mental retardation, autism, crippling diseases or handicaps….”
Did you catch that? Did you feel the punch, too? Three years ago, I would have caught nothing. I doubt I would have felt anything. So I don’t blame you if you don’t feel keenly the response that I do. But now, the sentence is enough to punch me in the gut, and I feel something stuck in my throat, and I pause on the words, my brain half going numb at the sight of them, and I sort of forget to breathe.
She just likened my daughter’s life to a disaster.
It’s not the first time I’ve been reading for fun and been jabbed unassumingly by an ableist line. Here’s an excerpt from Wikipedia’s definition of Ableism: “the ‘ableist’ societal world-view is that the able-bodied are the norm…. A disability is thus, inherently, a ‘bad’ thing that must be overcome. The ableist worldview holds that disability is an error, a mistake, or a failing, rather than a simple consequence of human diversity, akin to race, ethnicity, sexual orientation, or gender.”
Whenever I read something that hurts me as that essayist’s sentence did, I ask if I’m being too sensitive. Surely the author hasn’t envisioned my daughter’s life specifically as a “disaster.” So I fill in other phrases and imagine how readers would react.
What if, for instance, the author had listed, among such possible so-called “disasters,” conceiving a gay child? A female child? A black child?
Terribly offensive, right? 100% not okay. The editor of the bigwig NYC publishing house would have slashed that sentence immediately.
Which makes me wonder: Why have the lives of people with disabilities remained socially acceptable to demean or dismiss? Why is the above experience not anomalous? Why is it that, from time to time, I find myself punched in the gut by an otherwise well-meaning writer? Why is it allowed, even in the most unabashedly liberal media outlets, to call a baby with disabilities “defective”?
I know one thing, which is enough to console me, and even enough to let me forgive: if the aforementioned essayist met my daughter, she wouldn’t be able to use the word “disaster.”