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photo[1] What saps the spirit of special needs parents and advocates and person with disabilities themselves isn’t the fact that we’re fighting for things that are important, things that make a difference like basic human dignity. That’s easy, even ennobling in a way. The thing that breaks us down, bit by bit, is the way we fight the same battles over and over, like building sandcastles on the beach and hoping, foolishly, that next time, the tide will spare us.

It happened again today. I saw a tweet go by from someone on my feed, taking a cycling reporter to task for using the username “cycletard”. (I feel okay mentioning that without fear of looking like I’m encouraging harassment since she eventually changed it, which feels a little like progress.) I chimed in, and it went to the predictable places. She said that she didn’t mean it to be offensive, which was probably true enough. Then she gave some contradictory explanations for what she meant (it was French, but also it was a common term used among hipster cyclists, among whose proud ranks I guess she considered herself a member), her friends chimed in to her defense, I was called overly sensitive and PC and an idiot and a “misinformed zealot”, and asked if I would ban the use of other words like leotard. In the end, no one’s minds were changed, nothing much was accomplished, aside from the username being changed, and I think even that was simply a matter of her professional reconsideration of the wisdom of representing her employer with a name that was stirring up a little controversy.

A tempest in a teacup. Nothing to see here. Move along, and reset yourself, because I guarantee it’ll happen again tomorrow.

I don’t want to get into this particular issue again. Either you think it’s cool and funny to use that word, or you don’t. And furthermore, I understand the people who use it, in a way. I don’t have a great many regrets in my life, although I do seem to accumulate them as I get older and incrementally wiser. But chief among my regrets is how often I used that word in the past, casually and frequently and, perhaps worst of all, in my writing. That trend continued until as recently as 2006, when I was writing my book. I feel a great deal of shame for this. The thing I remember at the time, however, was how it felt to be told that the words I was using were insensitive, how defensive I became, and how very little I wanted to believe that I was doing something that could and did hurt others. Perhaps I really am overly sensitive now, with the zeal of the convert. Perhaps I am trying to atone for something, for everything. Maybe I just grew up a little.

I can tell you the thing that opened my eyes for good, however. It was the realization that my daughter knew that word, and knew exactly what it meant and exactly how maliciously it was intended when used. It was a shock because, well, we’d never introduced her to that word or what it meant. I think on some level we very intentionally didn’t expose her to it, with the desperation of every parent to protect our kids from emotional harm. All I know is that someone taught her that word, and they taught her to understand how vile a word it is and exactly how personally she should take it.

And so I advocate against it, in part to spare someone else’s kid from learning and, god forbid, self-identifying with it. But also in part because I realize now that I helped to keep that word alive, for years, and so it’s now my job to try to help kill it.

It’s a sandcastle, and the tide tears it down every night. Every time I rebuild it, it takes a tiny bit more out of me, but I’ll never stop. I owe too much penance. I care too much about the cost.

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