The Little Fish

The language of disability advocacy is full of drama. We talk of struggles and battles and wars. I’m as guilty of that as anyone, as I go on “fighting monsters with rubber swords”, etc. We use these terms because they feel appropriate so much of the time. We fight for the rights of our loved ones, we struggle against bureaucracy and unyielding systems, we wage war on societal ills and physical maladies alike. It’s largely hyperbole, I know. In our media landscape, subtle advocacy barely registers. Even if we lose a big monster fight, the world can still see it and perhaps understand.

As parents of kids with disabilities, we step up to the big fights, and while they can be exhausting and definitely take their toll on us, I think in some way we prefer them to the alternative. The struggles that truly tear us down and leave us dispirited are the little ones, the tiny indignities that defy our long-developed skills for the Big Fight. They can’t be confronted with a sword, and we’re not necessarily adequately armed with flyswatters. We fear our children being eaten by alligators, only to discover that they are more likely to be devoured by little fish, one tiny bite at a time.

And when we call attention to it, we appear unreasonable, because it’s just a little fish, right? That one little nibble is hardly worth all the arm waving.

Last week, Schuyler got bitten by a little fish. The morning before band contest, she was made to remove her wristbands, which she wears for hygienic reasons directly related to her polymicrogyria, by her band director because they weren’t solid black and didn’t match her concert wear. She’d worn these particular wristbands, which we’d purchased because they were black and grey and looked very stylish with her black clothes (they were made by a wonderful company called Wristspect Sport), at a couple of band performances before now, but I guess he only noticed last week. Schuyler texted me from school as soon as he told her to take them off, and I grabbed an old pair of ragged, fuzzy black wristbands and drove to the contest venue. By the time I found her, Schuyler was pretty upset, and the consequences of her not having her wristbands were already physically manifesting themselves.

So that was the small fish bite. Schuyler was embarrassed at having a teacher call attention to an unpleasant aspect of her disability and at the resulting physical complications. It could have been handled better (and that includes us for sending her in fancy wristbands in the first place). She could have worn them until they went on stage, for example, but that option wasn’t given to her. I wish I could say that she stood up for herself (although she now says that next time it happens, she’ll refuse to take them off and refer the party to her parents if necessary), but she simply did as she was told.

We realized, much to our embarrassment, that Schuyler’s wristbands weren’t actually a part of her IEP. I guess we just failed to anticipate a situation where the might and authority of United States federal law would be required to enable her to wear wristbands to a school event. And to be fair, it wasn’t the wristbands themselves that were the issue so much as the color. We were partially responsible for that, I guess, although honestly, the forbidden wristbands were pretty sharp looking. It never occurred to us that they would be unacceptable.

When I contacted the special education director to ask if we could put something about wristbands into Schuyler’s IEP without having a whole meeting about it, she did a curious thing. She contacted the band director, who said that he would allow Schuyler to wear wristbands in the future as long as they met his specifications (in this case, that they were solid black). When she wrote back, it was with the tone that everything was fine from now on, and so that was that. When I pressed the point that we still wanted it in Schuyler’s IEP, and that we were especially uncomfortable with the band director’s generous “permission” for Schuyler to continue using wristbands, she offered to place a note in her file but that was about it.

Okay. So. I know what we can do now, that’s pretty clear. This isn’t our first rodeo. Schuyler’s wristbands aren’t a fashion accessory, although they are pretty stylish (which allows her to conceal a potentially embarrassing aspect of her disability). They are accommodations for a medical condition. It’s easy enough to match them to her clothes if necessary, and we’re certainly willing to do that.

But when the special education director feels that getting the band director’s permission for Schuyler to utilize a reasonable accommodation is the good news, our options are fairly clear. We can call for a meeting to make a change to the IEP. The law allows that. The SpEd director doesn’t actually have the option of saying no to this request. And once it’s in the IEP, no one gets to tell Schuyler that she has to remove her wristbands because they’re the wrong color, any more than she could be barred from taking the stage because she wore brightly colored leg braces or used a wheelchair that was green. That’s an extreme example, I know; we’re just talking about wristbands, after all.

And that’s what gives me pause now. They really ARE just wristbands, and if the band director has agreed that she can wear them, isn’t that enough? Shouldn’t it be? Should we actually request a meeting, which is beginning to feel like we’re releasing the Kraken, simply to have this put in Schuyler’s IEP? Do we call attention to the little fish bite on our daughter, or do we just continue to be thankful that unlike many of her disabled classmates, she’s not swimming in shark-infested waters?

I honestly don’t know. We decided to wait until today before taking any further steps, and five days after the incident, part of me feels like it’s time to move on. Just typing all this out has been exhausting, and when I read over it, I feel like I want to delete half of it just so I’m not wasting your time with such a small guppy bite of an issue.

But the thing I keep coming back to is the expression on Schuyler’s face when I pulled up to the contest venue with her replacement wristbands. She was miserable, and she was confused. The rules had just changed right under her feet, and the result was unnecessary embarrassment. We’re inclined to make sure that never happens again, even if this is another instance of trying to address an issue that will most likely never again come up.

Schuyler’s expression in that moment of confusion and disappointment reminded me of a fact that I guess we all lose sight of from time to time. Those small fish bites may seem insignificant, but they hurt. And that sting endures.