Updated: Sep 12, 2021
Disfigured: On Fairy Tales, Disability, and Making Space, by Amanda Leduc (2020)
A fascinating book that is part memoir, part analysis of the way fairy tales and folk lore (as well as Disney princess stories and Marvel superheroes) only allow for certain types of bodies to have happy endings. While the book focuses its "othering" discussion on disability, Leduc also discusses gender and race as factors in the determination of who gets to live "happily ever after."
Leduc seamlessly intertwines her story of being disabled (cerebral palsy) with a discussion about representation in these stories - the way they usually frame those with different bodies as either worthy of pity, people to be fixed, or the villains of the stories. The metaphor is often that the disabled body is "a symbol of some inner ill" - an ill that is either irreparable, in the case of the villain, or redeemable through magical means (lifting a curse, for instance) or the completion of a quest of some kind. There is no space for these individuals to live normal lives, or even extraordinary ones, but on their own terms and in their own different bodies.
"Why, in all of these stories about someone who wants to be something or someone else, was it always the individual who needed to change, and never the world?"
"If society is used to not seeing disabled people in stories, society becomes used to not seeing disabled people in real life. If society is used to not seeing disabled people in real life, society will continue to build a world that makes it exceedingly difficult for disabled people to participate in said world."
In short, our stories reflect the fact that our society is unwilling to change or bend for anyone who doesn't fit the "ideal" body shape, ability, color, gender, age, etc. Those bodies are only valuable when they can find a way to fit themselves into that ideal. Someone like Leduc, with CP, is valuable because she found a way to walk. A girl who is good at sports is valuable because she plays "as well as the boys." A person of color who fits into the business world is valuable because she "talks like us" or doesn't wear her hair natural... The Ugly Duckling is valuable only once he becomes a beautiful swan. The Beast (of Beauty & the Beast) is valuable as a friend, never as the love interest - that is, until Beauty's "ultimate and noble sacrifice" of loving a monster turns him back into a handsome prince.
These tales are told to us from the youngest of ages, and are so ingrained in our society as to create the myth that happiness cannot exist without perfection. But personal transformation - the Beast into the prince, the wheelchair user into the person who can walk - is not always the goal. The goal is transforming the world. As one wheelchair user comments in the book, "I don't fantasize about miracle cures... I dream of ramps."
I underlined so many passages in this book I might as well have just highlighted the whole thing. It made me think about disability in new ways. It made me think about my mom, who grew up as a CODA (Child of Deaf Adults), being pitied and told "that must have been so hard for you." It made me think about my height - at 4'9" I am almost always the shortest in the room, unless there are children under the age of about 12 - and people saying how "cute" it is that I have pedal extenders in my car. It isn't cute, just as a wheelchair isn't cute, or a hearing aid or cochlear implant aren't cute. It's an accommodation that helps me work within the framework of a world that wasn't built for someone with a body like mine.
Of the myth that only certain bodies merit a happily-ever-after, Leduc says, "The stories we tell keep saying so. The stories make it true." Clearly, we need new stories.
UP NEXT: The Vanishing Half, by Brit Bennett