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In Defense of Monsters

Art by Laura Sako

Art by Laura Sako

Schuyler told me, “You should write about this.” So I shall, and she’s going to help.

It began with a discussion on Facebook. Well, of course it did. Schuyler is becoming more and more active online, and has begun pushing the door open to friending people beyond her immediate circle of real world friends and family. In particular, she’s accepted friend requests from people with disabilities from time to time. They are almost always people on my feed as well, and so we end up reading a lot of the same discussions.

So it was that Schuyler witnessed an exchange I had with someone who took a very dim view of my use of the word “monster” in describing Schuyler’s polymicrogyria. The post was harsh, but it was fair. I didn’t take it too personally; my use of language is worth examination, and I’ve certainly made some huge mistakes in the past. Even in a case like this where I feel okay with my word use, I also value the discussion.

Schuyler was less forgiving, not just in defense of her father (although that part was incredibly sweet), but also because she felt like the poster was insulting her intelligence. “I understand that poly is not a real monster and I am not dumb,” she said.

But it quickly became apparent that the thing that bothered Schuyler the most was not the besmirching of her dear father (insert deflating ego-balloon sound here) or even the suggestion that she wasn’t smart enough to understand metaphor.

Schuyler was upset because the poster thought that monsters represent things that are bad.

Looking back on Schuyler’s life, her love of monsters goes back to the beginning. She loved dragons and sea monsters the most, and as a baby, she fell in love with a King Kong figure I had in our apartment.

People assume that “Schuyler’s monster”, the term I used even before my book to describe her brain malformation, was a metaphoric creation of my own. But that’s not entirely true. When we tried to explain polymicrogyria to her when she was very young, she fixated on the idea that there was something in her brain causing mischief. As she grew older, it became her little monster, and later, when she tried to process the information with more depth, polymicrogyria became “Polly”.

I didn’t always understand; I dedicated my 2008 memoir “For Schuyler, my weird and wondrous monster-slayer”, not quite getting that one day, and soon, she would be at peace with her little monster, in a way that I perhaps never could be.

Schuyler is fifteen now. “I know it’s not a real monster,” she says as we sit and talk about this. “My brain is different. It make me think different and talk different from everyone else. My brain make me like a monster.”

To Schuyler, that’s not a terrible fate. On the Facebook thread, she said this, in response to the idea that referring to her disability as a monster teaches her, and society, to be ashamed of it:

“I am not ashamed of my disability and monsters are not bad and they just different. People are afraid of things are different like monsters.”

Schuyler doesn’t hate monsters. She loves them, because she understands them. Monsters are misunderstood. We think monsters are scary because they’re different, and she’s learned the hard way that the world doesn’t like different. And I’ve always recognized that Schuyler’s view of monsters makes for a perfect metaphor for her disability. I use it because it’s brilliant. I don’t mind allowing the world to give me credit for this metaphor because I’m selfish that way, but like most of my views on disability and how it affects my daughter and the people around her, Schuyler is my teacher. She has been from the beginning.

At some point in her conversations with people both new and familiar to her, Schuyler will ask one of her favorite questions. “If you were a monster, what kind would you be?” Her assumption is that if you could become a monster, you really would choose your favorite and then you would push the Monsterize button and transform. She’s never said so, but I suspect she also loves the idea of a world in which we are all monsters, and none of us are afraid.

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