Talking about disability often gets stuck in terminology; it’s easy to get mired in prefixes and connotations. If there is a “rule,” it’s that people get to call themselves whatever they want, and ideally other people will respect that. People come to words from different backgrounds. Like many others, I consider myself a disabled person—my disabilities and how I am treated because of them influence how I think and interact with the world. Some people are people with disabilities—their disabilities are secondary to their personalities. And some don’t consider themselves disabled at all. The adjective is fraught. But there needs to be a neutral concept-noun for when you need to call it something. More and more I am thankful that “disability” is a neutral noun now; sometimes euphemisms such as “handicapability” don’t serve at all.
To some people, the prefix negates all possible abilities. I get that, but I think “disability” encompasses rather than limits. For starters, it’s just a fact: “this/these thing(s) I can’t do.” But it also means the range of feelings and experiences that come with it and what you become because of it. You develop from reckoning with yourself and your environment—skills, personality, humor, what have you—for the good as much as bad. It’s an active state. It doesn’t define, god forbid—we’ve usually got work and hobbies and other things to do—but it influences. You just have to meet the sense of the word where it is: where the person is.
When kids ask a disabled person “What happened” or “Why,” it always starts implicitly with “dis.” The dis is obviously a thing; they notice. And the ways they ask sometimes crack me up and even make me think of my disabilities in new ways. It’s just a starting point. You can answer however you like. And for kids, you do want to answer so they develop a positive image: “I use wheels instead of walking,” or so forth. Mostly you don’t need to call it anything. But if you want to find books that explore disabilities, that’s the heading you’re likely to use, because the dis is where the question starts. Since we still need books as mirrors and windows—and also apparently as interpreters in order to be listened to—sometimes we just need to be able to find the books that say the whole spectrum well, especially since anyone can become disabled.
Disability isn’t usually a wasteland to most people, given good variables—with good-enough variables, it can be background noise. But it’s expansive and iridescent enough to hold complex situations and feelings that euphemisms don’t, and it acknowledges that disability comes from scarcity and environment and other people’s prejudices as much as the body. Silencing the word can silence real injustices, emotions, and experiences. Diverse books are tools for empathy, but we can’t address what we won’t say.
Amy Robinson is a children’s librarian at the Carnegie Library of Pittsburgh and a Kirkus reviewer.