The Separation Box
This past week was IEP Week, which makes it sound a lot more fun than it is. (It can sometimes feel a little like Shark Week, probably for the wrong reasons.) Our experiences as special needs parents are incredibly varied and diverse, but it feels like for those of us with kids in public schools, the IEP is a universal hurdle. Sometimes it’s a success story, but it’s hardly ever an easy one. Many of us believe that in a perfect world, every public school student would have an Individualized Education Program. That’s mostly because every student learns differently and would benefit greatly from such a focused and customized approach to their education. But there’s this teeny tiny part of us that also just wants to share the fun with everyone. Misery loves company; anxiety does, too.
The exclusivity of the IEP experience is one of our secret handshakes. It’s a thing that separates our kids from their peers, even as it exists to help integrate their school experience with their typical peers. That separation can become a matter of sensitivity for our kids, especially the ones like Schuyler who are now attending those meetings. The thing of which I am frequently reminded by Schuyler is how very much she doesn’t enjoy that separation. She gets why it’s necessary, though; she will tell you that her brain is different and she needs some extra help. The process itself brings that home to her.
Sometimes it’s more than the process.
The term “special education” has been around for a very long time, and it seems to be one of the few disability-related phrases that hasn’t been largely replaced by something either gentler or loaded with administrative euphemism. By and large, I think those changes are positive, at least in their intent, although I still twitch when I read things like “differently abled”. (“I can fly!”) Special education is a term that isn’t going anywhere in most environments, and that’s fine. We pick our battles carefully.
The problem with “special education” may lie in the meaning that so many have come to load it with, particularly outside the disability community. It has become shorthand for inclusion and a kind of perceived entitlement, where special education kids negatively affect the learning environment for everyone else. Teachers are expected to “cater” to special education students, at the expense of everyone else in the classroom. And in situations like Schuyler’s where the class in question is an elective and requiring unique accommodations, there are many who believe that kids like her simply don’t belong.
The thing of which we are reminded sometimes in our kids’ IEP meetings is that for some teachers and members of the community, special education appears to be an alien world, one for which they have no training and ultimately no responsibility. Those of us in the disability community know better. All students fall somewhere on a spectrum, and special education represents just one area of that spectrum. Special education doesn’t serve as a box in which we put the Others Who Don’t Belong. It’s a way to give kids who need it some extra and specialized help. Some need a lot, others not so much. But none of these students are inhuman. None are without value or potential.
When we insist on separating special education students, both literally and philosophically, we make judgments on that value and that potential. When we talk about the few holding back the many, we imply that there’s a disposable percentage. What does that number look like, the throwaways? One percent? Twenty? At what point do we begin throwing out the kids who are hard to reach for other reasons? Do we have boxes for gifted and talented kids, too? Or the ones with attention disorders?
And what if we’re wrong? How many kids do we allow to fall into the abyss of low expectations before we begin to worry?
I hate this idea, the one that suggests that the world suffers when it extends a helping hand. It doesn’t just steal opportunity from people like Schuyler. It diminishes every one of us. It makes us all smaller, and blander, and uglier. Even on a good day, the world can hardly afford that to happen.
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Out of curiosity, is giftedness not included as part of Special Education where you live? In most Ontario school boards gifted classes and resources fall under the Special Education umbrella, likely due to the high incidence of students with multiple exceptionalities (this is the language that is most commonly used to describe such students, at least at this moment in time).
I’ve also heard of kids learning English as a ‘second’ language being covered under special education in some areas. To me, it makes perfect sense. Special needs literally means ‘needs that differ from most kids’. It doesn’t have to be due to a disability. Gifted kids, kids who aren’t fluent in English, and even teenaged parents are all examples of kids with special needs not caused by a disability.
I agree with you on the “differently abled” terminology. How can you reduce negative attitudes toward disabilities if the word “disabled” is too terrible to be uttered?
Where can I buy Shuylers monster is it on iTunes
My favorite recently-found quote about disability goes something like this: “You’re living in a world that isn’t set up for you.”
The speaker was Helen Keller, addressing newly-blind and otherwise handicapped young veterans of WWI. I read it in *Blind Rage: Letters to Helen Keller,* whose schtick is that the author hates Helen for being the implausibly-perfect poster child for all disabled kids everywhere. (I found it refreshingly angry, literate, and self-humorous at the same time. Rob, you might enjoy it for all those reasons.)
I liked how this shifted the philosophical focus from “how do we solve a problem like [me and my disability]” to “how do I get around in a world that isn’t set up for me.” I don’t think it paints a complete picture–obviously Schuyler’s seizures and other monster-generated physical dangers are as much a part of her disability as her social need for the iPad and IEP, and the only way I can think of to accommodate such physical risks is to cure/treat them. But it’s also true that what we call disability is as much a function of “the world” that isn’t set up for it as by the person it isn’t set up for. I’m sure it sounds obvious to a parent who’s been saying this precise thing for a decade now, but it’s still a mental shift that eluded me most of the time until I read it.