“So, the chair… can I ask?”
“So how long have you….?”
“So what exactly is your… you know….?”
“So… never mind.”
Oh my goodness, people, use your words!! This happens all the time. People want to ask me about my disability, but they can’t find the words to do it, so they string together a few generic question words, and then look at me expectantly, like I should fill in the blanks. Really? You want me to ask the question and answer it?
Nope. Not doing it. I’ll answer your question (and if I don’t want to share something, I promise to turn you down very politely), but you need to ask it yourself. I’m not doing all the work.
It’s crazy to me, watching otherwise intelligent, articulate people lose their ability to express themselves when it comes to disability. They’re thinking about it, they’re curious about it, but they don’t have the words to talk about it. They let disability become Voldemort.
Let me be clear: DISABILITY ISN’T VOLDEMORT!
(As I typed that, I had this flash of familiarity, like I’ve heard that idea somewhere and it didn’t actually come from my own head… So I googled, and sure enough, I saw it a while ago in this entry on the fabulous Mary Evelyn’s blog.)
Remember how everybody was so scared of Voldemort, that they couldn’t even say his name? I don’t appreciate when you approach my disability with Voldemort-level of fear. It’s not an unmentionable that-which-shall-not-be-named. As I say to my students when it comes up, “Disability isn’t a good thing or a bad thing; it’s just a thing.” Value-neutral.
I get that these people are just trying to avoid saying something offensive. But instead, they’re not saying anything at all. Please, say something! Pick a word and use it! If you use a word that rubs me the wrong way, I’ll probably say something, and I’ll say it with a smile. That isn’t me being offended; that’s me offering you a gift of trust. I’m trusting you enough to share a piece of myself, what I think and why I think it, and trusting that you’ll care. A conversation will happen, and we’ll understand each other better. And all of that is so much better than not saying anything!
For the record, I consider silly euphemisms like “differently abled” or “handicapable” to be the equivalent of calling Voldemort “You-Know-Who.” You aren’t saying what you mean; those words don’t really mean anything. My body isn’t able to do all the things, and that’s ok, so please be ok with it. When you twist language around to make sure you’re emphasizing what I can do, it just sounds like you’re uncomfortable with what I can’t.
Harry wasn’t afraid to say Voldemort’s name. And when he did, Voldemort lost a little bit of his power. Harry’s ability to name what scared him, gave him the ability to deal with it. He could move past the cowering fear and seek out the tools and support he’d need to face Voldemort head-on.
A student once asked, loud and proudly, “Can you put some music on while we work? I have ADHD, and music helps me focus.”
He was speaking my language! (Yes, I turned some music on.) I loved that he was able to articulate his needs, the reason for his needs, and a strategy that helps. I wish more of my kids knew how to do that.
Conversely, I’ve listened to other professionals discussing a particular kid, calling him lazy, lethargic, shy, stubborn, etc. When I suggested a particular disability that I thought he may have and that I thought should be looked into, I’d get lectured about the danger of labeling kids. What? Calling a kid lazy and stubborn isn’t labeling them? I felt like the only person at the table suggesting a non-offensive label.
The fact is, we all go through life with tons of labels slapped on us. There’s no avoiding it. Imagine the kid who wanted to listen to music–what if instead of “ADHD,” the labels he’d internalized were “bad kid,” “always in trouble,” “stupid,” “hopeless”? Nobody would have to actually say these words to kids; they’ll internalize them anyway if they aren’t given a better explanation for the unique ways their minds and bodies work. In my experience, the kids who are most successful, are also the most self-aware. They know their own strengths, challenges, and tools/techniques/resources that help them. If that includes disability, they can speak intelligently about it. (For the skeptics, I’m not suggesting that we give kids an excuse. Disability isn’t about making excuses. It’s about having the information to personalize their road map to success, however that might be defined.)
My point is, disability words aren’t bad words. They’re descriptive words. They can be empowering words. I give you permission to use them!