Push and pull

"Have you ever found a term for our super kids that doesn't piss you off Robert? Since there are times when we need to call them what they are (Special needs, Differently-abled, handicapped, whatever)."

It was a fair enough question, although it started from a false premise. I don't believe I've ever stated that I "hated" any identifying terminology, aside from the word "retard", and I hardly think that's exactly crossing the line into oversensitivity. The above comment was made in response to a joke I'd made about the term "differently abled". Most of us who spend time in some way in the world of disability tend to engage in a little dark humor; some very pointedly do NOT. I made a joke about "differently abled", the same one I've made before about how it sounds to me like we're describing toddler superheroes ("I can fly!"), and it pushed someone's buttons.

Which is fine.

It's fine because we're not all the same, we're not even close. We call ourselves a community, but as I've pointed out before, we don't actually agree on all that much. We don't agree on terminology. We don't agree on whether special needs kids are better off in segregated special education classes or in total inclusion, or something in between. We don't agree on cochlear implants or vaccines. We don't agree on whether kids with developmental disabilities need as much help as they can get in order to try to make it independently, or if they're fine just the way they are, or if they're fine just the way they are and yet should somehow be able to live independently in this rough world. We don't even agree on who gets to claim membership in this "community".

So no, we don't agree on much, and again that's fine, because all of our worlds are profoundly far apart. Creating a real community with common goals might just be too much to expect. I can see that now.

As a neurotypical parent, there's only so much that I can expect to understand about Schuyler's internal world. That is equally true, however, of even the world's most experienced educators or the most brilliant doctors and therapists, and it's true of observers with chronic conditions and of self-advocating persons with unrelated disabilities like autism. It's particularly true of those who have never met her, but it's often true of family members, too. Schuyler's inscrutability is true of those passing-through people who meet her once or twice, whether they realize it or not, and of all but a very few close friends (and they know who they are, I hope). Perhaps other kids with bilateral perisylvian polymicrogyria might have some insights, but, if you'll excuse the phrase, most of them aren't talking. And even if they were, fancy medical types who Know Such Things have declared that Schuyler's particular manifestation of BPP is very likely unique.

So perhaps she is ultimately unknowable, but Julie and I don't accept that, and shame on us if we ever did.

It's a foggy world, and we try to enforce some kind of order on it, because one of the more disquieting aspects of disability is the chaos, the unknown. Kids like Schuyler experience the world very differently from neurotypical children. Sometimes they are unaware of this difference, but others know it. They know it, and like Schuyler, some of them push back against it and try to fit in, try to pass even as we try to convince her that she doesn't need to. Well, try to convince ANY eleven year-old girl that she doesn't need to fit in with her middle school classmates and see how far you get. But other kids who understand that they are different, some of them similar to Schuyler and others with disabilities but entirely UNlike her, they reject the impulse to fit in. Some don't even feel that impulse at all.

Parents of kids like Schuyler also live in a world of chaos. We struggle with the push and pull. We're responsible for our children and yet we're making up the rules as we go along, rules which disintegrate like cigarette ash when circumstances dictate. As I said recently, we stand astride two worlds, that of the neurotypical (which we try but fail to educate about our kids) and of the disabled (which we can try to understand ourselves but can only do so from outside, as the most interested of all interested parties). And our dirty secret is that in standing with a foot in each of those worlds, we don't actually fit into either of them very well. As time goes on, we fit less and less, not more. But through entering into authentic relationships with our broken children, we do achieve a kind of understanding, and we are enriched and enlightened by the experience, so in the end, we are richer for it. It's a tough life, but we're privileged to be a part of it. Sometimes we find a little peace.

I know, by the way, that I lost a few of you there when I said "broken". And once again, that's fine. Of all the terms I have used over the years, that's the one that has earned the most comments. But here's the thing. Those comments have always, ALWAYS, been pretty evenly split between Team "How Dare You" and Team "That's It Exactly". More importantly to me, I've heard from quite a few members of Team "'Broken' Is How I Self-Identify". So I keep using it, because it describes what I see and experience with Schuyler, in a way that holds equal measures of pragmatism and hope. If Schuyler ever asks me not to use it, I'll stop.

More and more frequently, I find that our fragmented and underpowered community trips itself up on terminology. We establish the words that work for us, we insist that others use our language, and we fly our Flag of Offense when we are denied. I guess that applies to the whole "R Word" debate in some ways, although I still feel that if you are adamantly defending your use of a word that is so widely accepted as derogatory and which makes persons with developmental disabilities into the defenseless butt of your ugly humor, you're probably not so much a Warrior for Free Speech. You might just be an asshole, and probably need to come to terms with that.

Having said that, I have a confession to make. I kind of wish I'd never written about the "R Word". I sometimes wish I'd obeyed the little voice that whispered in my ear that it wasn't a place I wanted to go. Not because I don't believe in the cause, because I do, very much. But I never wanted to get branded as someone who thought a word should be "banned", or that every time it was uttered by a dumb teenager or an entitled hipster or a sports figure tragically planted in front of a microphone, I would be expected to raise that Flag of Offense and charge into the fray. I just wanted people to understand the word they were wielding and exactly how many people were hurt when they used it, even as my own understanding of its power was limited to my own experience as a parent and someone who loves Schuyler ferociously. It's a battle worth waging, but I'm not sure I was ever the right person to take up the cause. I don't know. I'm sorry I did, but I'm glad I did, too.

Not every squabble over terminology is so clear cut as "Don't call people retards, seriously." There are many ways to approach the issue of word usage, I suppose. We could insist on the use of People First Language, for example, but despite what you may hear or read (and GOD, you will read the claim if you consult Dr. Google even a little), People First is NOT universally accepted. I've written about my own negative feelings concerning People First, and there are others who have written at length, including many persons with disabilities. People First Language is a well-intended concept, and it works for a lot of folks, but where I believe it fails is in its insistence on universality.

Truth is, there is no universal perspective on disability. We can't even agree on what to call our kids. The special Toys-R-Us catalogue that I was discussing when that earlier comment was made referred to our kids as "differently abled". And if that works for you, that's fine. (How many times have I said "that's fine" already?) I don't feel like Schuyler is differently abled, though. She doesn't have abilities that are different from anyone else's, not exactly. She uses a speech device and employs some sign language as needed, but they're not inherent abilities that have organically grown out of her disability. Those are skills she's picked up by necessity, and she's not much of a prodigy at any of them. She uses them well enough to suit her needs, and that's enough. Her abilities are purely human, and some of them are broken. She can't talk, much less fly. But she can communicate, and she works harder at it than I do. Or you, for that matter.

She's not differently abled, but she does do things very differently, and that's what ought to be celebrated. Schuyler began with no verbal communication, so she developed her own manner of expressing herself, and that manner is extremely physical. Schuyler doesn't speak like you or me, but she communicates in her own perfectly Schuyler way. She verbalizes as effectively as she can, and sometimes it's not bad at all. But she also touches, she mimes, she hugs and hangs onto her loved ones. She invades the "personal bubble" of her classmates, much to their consternation, which is an issue we're working on. It's hard, though. Schuyler tugs at you insistently when she wants to show you something. Perhaps if she had the voice, she would just tell you about it instead. But most times, I'm happier to have her pull me, show me, to express her love and her happiness with hugs and kisses and imploring looks and flappy hands and her goofy laugh. Most times, I think maybe words alone would be boring.

Is Schuyler "differently abled"? Is she "disabled"? The hated-by-all but used-by-all "special needs"? "Broken"? "Neurodiverse"? Does it make a difference what she is? Do the inadequate words we choose really matter all that much as we try to grasp the imperfections that make up our loved ones, or our very selves? Yes they do, and no they don't. And we have to find a way to be okay with that.

As for Schuyler, I might just be wrong. She CAN fly.