Why I Left It Up to My Daughter to Choose Her Halloween Costume
by Bernhard
Bernhard’s daughter, Elena
Last week at school my phone notified me that my tiara and stuffed 18” horse were arriving. Having them delivered to work was a poor choice. How in the world was I supposed to sneak these into my car without any of my colleagues knowing?
As I mentioned in my Easterseals blog post last year, I have always chosen Elena’s Halloween costume for her.
Transforming her wheelchair into a bulldozer or a full on stove was creative and fun, but they were my choices, not hers. I was creating these costumes for my own enjoyment rather than supporting her independence.
So this year I left it up to Elena to choose her costume. This one is all on her.
Because Elena is nonverbal, she uses eye gaze technology to communicate. That, or she looks up for yes or to the side for no. As we were sitting around after dinner one evening, I asked her what she wanted to be for Halloween. “A card dealer at a casino?” I asked.
“No.” Elena replied quickly and clearly.
“I could go as the Beast, and you could be Belle from Beauty and the Beast?”
A noble idea that peaked her interest, but no sale. Eyes to the side.
“A basket of dirty laundry?”
Elena responded with a look of disgust and fear.
Reluctantly, I finally asked the question I didn’t want to. I already knew the answer. “Would you like to be a princess?”
Her eyes shot up, she shared an enthusiastic smile, and her body stiffened with excitement.
OK, now we had an idea, but we needed to get a little more specific. After a full summer of Moana, I was hoping that she would draw some inspiration from that character: a strong figure, and her happiness isn’t contingent on a man. Rather, she finds her own individual strength and identity.
But no. Bust out the glass slippers instead. Elena chose the princess of all princesses: Cinderella.
Halloween has meant so much to us over the years because it’s about making a spectacle of yourself. As a parent of a child with a very visible disability, we make a spectacle of ourselves wherever we go. Whether it’s to the grocery store, shopping at the mall, or eating a meal, people look at us. We attract looks, smiles, and stares. It’s never mean-spirited or cruel, but mostly a warm smile or curiosity. We’re certainly used to it by now, but I often wonder how Elena might respond, and every year Halloween gives us the opportunity to embrace the spectacle and have others be part of it.
So, I spent last weekend reluctantly putting Christmas lights on Elena’s wheelchair and mounting the horse on the front so that it looks like a horse-drawn carriage. Today we are all celebrating that this year, it’s Elena’s costume…and we’re enjoying another spectacle.
More posts from Bernhard about Elena: