Sandcastles
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.
Note: To support the site we make money on some products, product categories and services that we talk about on this website through affiliate relationships with the merchants in question. We get a small commission on sales of those products.That in no way affects our opinions of those products and services.
I think the change has to really grab hold with the next generation, but I’m not sure how to stop the current one from “infecting” the next. I actually read one of your entries out loud to my younger son (he wasn’t using the “r-word,” but one of the online Minecraft videos he was watching was tossing around “special” a bit too cavalierly for my comfort level), and it nearly moved him to tears. He hears the kids on his bus use very rough and mean language on a daily basis, including That Word, and I don’t ever want him to become inured to it, but I don’t know how to stop it – except to keep the conversation alive, always alive. I told him I’d rather overhear him swearing up a storm. Amazing how many people feel the opposite…
It really is everywhere, and depressingly enough, prevalent among among young people. Ignorant old people like me are one thing, but I feel like there’s a generational battle going on here, too.
Just this week, I was grocery shopping very late, hoping to finish before the polite chime over the intercom to please come to checkout. And I overheard two stockboys actually having a thoughtful conversation on this topic. One apparently had heard or read something about it and was saying, yeah he could understand what they meant. But he thought the person took it too far by including “idiot.” Overall, I was encouraged that maybe the message was getting thru in some ways.
That’s deeply encouraging, actually.
Just to let you know, your writing on the subject, and about Schuyler, has convinced me to stop using That Word. Score one for the sandcastle. I’m keeping all my other naughty words though.
Anyone who knows me can tell you that my repertoire of foulness is still plenty well-stocked.
Every conversation about the negative use and repercussions of the word is a seed planted in someone’s head to think before they say it. Even if that seed takes years of life experiences to begin to sprout in an individual, eventually it does begin to grow roots. As humans, I believe we learn life’s most important lessons about being compassionate through our failures and our mistakes. By sharing our stories and talking about the negative effects of the word, we build and rebuild our castle. Everyday. It’s that important.
Here’s hoping you’re right. It can be hard to see sometimes.
Like Schuyler, my daughter Rachel is 13. Rachel has Down syndrome. When Rachel was little, I was working with parents of older kids on a project. They seemed so unexcited and apathetic I thought. In retrospect, I think they were tired. I’m not making excuses for them (maybe I am!), but I wrote on my own blog the other day that it is exhausting to take on the issues day after day and the same ones again and again. Sandcastles are a good analogy. Thank you.
I see that same perpetual exhaustion in the parents I meet with, and I wonder if I have that same look in my own eyes.
I think about this all the time and I wonder if I have that same look.
Your words are like a sweet solace for me, Rob. Especially on days like today when I fought my own battle in the special needs world for my daughter, Chloe, who is 8.5. Chloe has both Down syndrome and Autism. She has little words and so my husband and I must be that voice for her. I know you can relate.
Every day I feel like I build that sandcastle, in some form or another, and most days I try not to let it get the best of me when it’s knocked down. How true your words are! They resonated with me so much.
Today is a day I am tired of building the damn castle; a day I am finding myself looking at my torn down masterpiece and feeling defeated. I feel like I’m standing over it asking myself how I’ll ever build it again and questioning why it’s so challenging to make booby-traps that work to protect it. 😉 (Going with the analogy here, haha).
Even though I know I feel this way now, and yes, even though I’m never too quick to forget I’ve survived days like this before even worse — I am comforted by your words and the thoughts of knowing that tomorrow is a new day and that I will move past this. My little girl reminds me to do so in the way she always wakes up in the morning with a smile on her face, as if she’s long forgotten the troubles we faced the day before. She is my little teacher in that way. And on the days it’s difficult, I simply just follow her lead and inevitably build again.
Thanks for your ALWAYS comforting words and for sharing your thoughts and feelings on the matter. It was the perfect analogy! I join in your pursuit to never stop fighting the fight…and to never stop building my sandcastle.