Disfigured: On Fairy Tales, Disability, and Making Space (Coach House) is a brilliant and startling book of essays by Amanda Leduc exploring the intersections between fairy tales and disability. In what ways, she asks, do traditional fairy tales portray disabled folks, and how do these fairy tales continue to perpetuate certain myths and stereotypes about disabled people?

The Washington Post calls the book smart and tenacious. “Her daring approach is a hybrid of memoir, literary criticism and cultural commentary. She moves fluidly between grade-school memories and scholarly analysis. She quotes from medieval texts and TV shows. She’s equally familiar with the Brothers Grimm and the X-men.” 

Amanda Leduc’s essays and stories have appeared in publications across Canada, the US, and the UK. She is the author of the novels The Miracles of Ordinary Men and the forthcoming The Centaur’s Wife. She has cerebral palsy and lives in Hamilton, Ontario, where she works as the Communications Coordinator for the Festival of Literary Diversity (FOLD), Canada’s first festival for diverse authors and stories.

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Trevor Corkum: Early on in Disfigured, you talk about how your inspiration for the book came about during a writing retreat. Can you talk more about that seed, and what steps fell into place to make the book a reality?  

Amanda Leduc: The idea for Disfigured came about while I was participating in a writing retreat on Hedgebrook Island, off the coast of Seattle. The retreat takes place on a farm, with a variety of woodland trails for writers to wander during the course of their stay. I was working on a novel and having a hard day of it, so I went for a walk through the forest. I had a walking stick with me, and I found as I walked that the walking stick helped me in ways that were really surprising—I don’t use a cane in my day-to-day but I do have issues with balance, and having the walking stick as an aid made me think about how forests have traditionally been a place that’s inaccessible to many of those with physical disabilities. And yet, as I kept walking, it struck me that the forest as a literary device has been a place where disabled people have existed for a long time—because of the way that disabled people have featured in the fairy tales we all know and love.

Amanda Leduc: It was a connection that struck me suddenly and also felt inevitable and obvious. Of course disabled people have existed in the fairy tale forest for eons. The dwarfs and Snow White, Rumpelstiltskin, the stepsisters who maim themselves in the Grimms’ version of Cinderella. Yet we so rarely think of these characters as disabled people—and why not? How does that erasure of disabled people and disability contribute to both the continued erasure and stereotypical portrayals of disability in the stories we tell today?

It was a question that I wanted to put in an essay. The connection seemed so obvious, in fact, that I was convinced plenty of works would already have been written about it. It was a bit of a shock to come home from the retreat and begin my research only to discover that there wasn’t much out there about the fairy tale/disability connection. And so my essay grew and grew and eventually I realized I had enough material for a book.

I’d long been a fan of the Exploded Views series that Coach House puts out, and when I seized on the idea for the book I thought the EV might be a good place for it, so I took the proposal to my agent and we pitched it to Coach House. Lucky for me, they agreed to publish it!

TC: In the memoir, you unpack some of the incredible damage well-known fairy tales have caused disabled people, whose lives and bodies are rendered “less than” able-bodied princesses and superheroes. Do you see these representations changing at all? What more needs to be done?

AL: I do think there’s a wider awareness now of the ways that stories and storytelling impact all of us, especially when we’re young. But I think we still have a long way to go in terms of positive disability representation. Many of the stories that we see over and over again in mainstream media follow the “happy ending” arc that fairy tales are known for, even if these narratives aren’t fairy tales themselves per se. And because we’ve associated the happy ending with a particular type of protagonist and body for so long, it can be difficult to break that mould and begin to examine and envision what other happy endings might look like.

We need to see stories of disabled people who triumph, who succeed, yes, but who do this by rallying the world and the communities around them to change. Instead, I want us to tell and celebrate stories where it’s society that changes and expands to include the disabled body. We’re definitely on that road now, but there’s still a long journey ahead.

TC: The book is also a powerfully personal exploration of growing up with cerebral palsy. As readers, we follow you from your childhood living and struggling with bullies, toward an adulthood of great achievement and also disappointment, eventually arriving at a new understanding of what it means to live and write as a disabled person. Can you talk more about that journey and where you are today?

AL: My journey as a disabled woman definitely has a kind of fairy-tale arc to it, in the sense that my disability was something I struggled against and tried to ignore for a long time. But it was only in confronting and embracing what it truly means to occupy a disabled body—and understand the disadvantages, yes, but also the responsibilities and privileges and the power inherent in this—that I finally arrived at a point of pride and happiness with myself, both as a writer and as a human making her way through the world.

Writing Disfigured was in many ways a culmination of the past five years of my life—five years which saw a lot of struggle and sadness in reckoning with the scars of childhood bullying and understanding how my expectations of myself now—as a writer, as a person—are directly tied to how I perceived of myself as a disabled child. To me there is definitely something magical about the way that writing out this story—teasing out its various threads and connections—has contributed to the ways that I view myself and my role as a writer and reader in the world today. I am so much more confident in myself now, even from where I was five years ago. It’s been a difficult journey but one that I’m so glad I’ve had the opportunity to undertake. Disability has offered me a unique insight into the world and a very particular perspective on what it means to live and love that I don’t think I’d have learned otherwise, and I am incredibly grateful for this.

TC: One of the common themes in the book is the importance of community. You speak about the network of disabled writers, activists, and others who have provided support and motivation along your journey. What would you say to someone who is unsure or uncertain about where to look for community?

AL: One of the wonderful things about the Internet that I’ve found (despite the Internet’s obvious flaws) has been its ability to connect people in ways that transcend geography and age. For the disability community in particular, the Internet has revolutionized connection. Many disabled people who are not able to participate in traditional communities because of difficulties in physical access have been able to connect with, share, and learn from the stories of other disabled people online, myself included! I think the Internet offers a great avenue for initial connections.

If you’re not sure where to look for community, start by doing some Internet research—consider what your interests are and what excites you, and look for online communities that correspond to these interests. Consider using social media as a way to begin listening to conversations about the things you care about. One of the greatest things I did in my journey toward disability community was follow and listen to disability activists and writers on Twitter. I’d say I spent a good year on Twitter just following people and listening to/reading their conversations as a way of familiarizing myself with things they were passionate about, the issues and worries that mattered most to them. The more I listened, the more I learned, and when I finally started reaching out and making connections of my own, I was able to do so in a way where I understood what kind of place I myself wanted to have in the community—how I wanted to contribute to conversations, what issues mattered most to me, etc. And that networking inevitably led to in-person connections, which radically changed and altered my life.
So that’s my advice, in a nutshell. Look to the Internet for conversations—especially if you’re shy, like I was and am!—and approach points of interest from a place of listening, of wanting to understand how these communities care and operate and what you yourself can offer in return. Community, after all, is a two-way street. Think about what you can bring to a space, and the ways that your unique self can enrich the conversations around you both by listening and contributing.

TC: Finally, you also write about the damage that attitudes of pity and charity can have on disabled folks and disabled communities. In your opinion, what’s the most important thing able-bodied allies can do to support their disabled friends, lovers, peers, and colleagues?

AL: This touches a little bit on my answer to Question 4! Disabled people have been talking about the issues affecting our community for decades, and more often than not these concerns are either ignored, dismissed, or downplayed as not important. But they are important, both for disabled and non-disabled people alike. We are at an exciting (and challenging) time in human history, where there’s a growing awareness of how the world needs to change and adapt away from a one-size-fits-all approach in order to ensure that everyone in society is taken care of and their needs met. Disabled people—and many other marginalized groups—are uniquely placed to usher in this transformation because this access is something that we’ve been asking for all along. So when a disabled person speaks up about an issue, listen to them. Listen, and consider what you as an ally can do to help bring about the change that they seek.

Consider the Canadian literary world. If a disabled writer is talking about access in literary spaces? Listen, and consider how you might do better, and implement that change.

If a disabled person is asking you, as a non-disabled person, to support the community by only supporting initiatives that are inclusive and accessible? Don’t dismiss these concerns, but instead consider that disabled writers have been excluded from many CanLit conversations for a very long time.

Disabled activists often get labelled as angry and are summarily dismissed as a result of that anger, but all of our allies need to understand that that anger comes from a place of deep hurt, isolation, and exclusion. When a disabled person speaks up about an issue, it often boils down to the fact that they’re being excluded in some way from community. As an ally, it’s your responsibility to consider how we can all work together toward a more inclusive community that’s truly representative of all of our experiences and concerns.

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Excerpt from Disfigured

I don’t want to be like this, I remember thinking all that long, horrid fifth-grade year. Why do I have to be like this?

Why can’t I be normal, why can’t I walk like everyone else? Why is everyone so mean?

Looking back on this now, from almost thirty years in the future, I can see multiple things at once on behalf of that little girl who dreaded getting on the bus every morning. The children I went to school with were not evil – not even my nemesis, persistent antagonist in my life though she was. They were children, responding to a world that had already told them so much about what it meant to move through society in a way that was different. Like the stratified society of Andersen’s Copenhagen, their beliefs about what it meant to be different had everything to do with social expectation and success. The schoolyard is a cruel place in the same way that the world is a cruel place – not because of individuals, although that is also true, but because collectively we seek to belong, to blend in, to be accepted, and it is easier to shun those who do not fit rather than risk one’s own spot in the strata.

‘The ideology of ability,’ says Tobin Siebers, ‘is at its simplest the preference for able-bodiedness. At its most radical, it defines the baseline by which humanness is determined, setting the measure of body and mind that gives or denies human status to individual persons.’

Why can’t I be like everyone else? says the woodcutter who longs for a child.

Why can’t I be like everyone else? says the lonely queen who wishes for the same thing.

Why can’t I be like everyone else? says the Maiden Without Hands, says the Little Mermaid.

Why can’t I be like everyone else? says Hans My Hedgehog.

No one is asking the right question. We know that in fairy tales no one has to, because salvation and happiness – even
happiness of a kind – comes to most of these individuals anyway. Society is not changed, but somehow our heroes come out on top.

Eventually, it seems, everyone in a fairy tale meets one of two fates: they get what they want, which is to be just like everybody else; or they do not get what they want, and they die destitute and alone, a cautionary tale for others who might likewise wish for unattainable things.
But what happens when we ask a different question? What happens when the princess or the childless parent or the half-human boy says instead, Why should I be like everyone else?

What kinds of stories might we get to tell then?

From Disfigured, published by Coach House Books