Issue 50: Summer 2020

In Story, In Root, In Access: Disfigured Author Amanda Leduc in Conversation with Kerry Seljak-Byrne

When I opened Disfigured, I landed in a forest.

Stepping Into The Forest ...

Kerry Seljak-Byrne: When I opened Disfigured, I landed in a forest.

I love forests. Always have. Maybe it’s because they can be a quiet safe haven in a world that’s constantly overstimulating; maybe it’s because I was surprisingly good at survival skills that one time I got sent away to sleep away camp. Maybe it’s because, like Amanda, I’ve always been bewitched by the fairy tales that thrive in forests. What they give. What they take. What they hide. The forest, of course, is also changeable and unforgiving—what was once a pleasant stroll of silence and introspection can shift with the wind to a sudden thunderstorm, leaving me soaked and panicked and in the midst of a meltdown.

There is something special about this introduction, and all its twining branches and roots. It reads like a story. A story about stories. Which sets the scene for the book itself: a story about how stories, fiction and nonfiction alike, twist and turn and engage and tie into one another. How nows and thens and once upon a times collide, on the page and in our lives.

I wrote an essay, once, about fairy mounds in Ireland. One of those essays you actually enjoy writing, because it lets you pick up little pieces of your diasporic self on the way. It was all about how fairy mounds occupy space halfway between fiction and nonfiction; how real and unreal meld and merge around this very real, physical space, because story and reality cannot be untangled. For me, this is the work Amanda does in her introduction, in her book—and the work that she does throughout this book. Fairy tales are so deeply embedded in our culture, historic and contemporary alike, and helps us recognize that the melding and merging is just as important as the stories themselves.

Fairy tales, like forests, can give and take—what is rewarding in some ways (a quiet walk through a wooded area, away from a stressful family fight) can cause meltdowns in others (rapids you weren’t prepared for, that leave you hyperventilating in your canoe). Disability in fairy tales, certainly, takes more than it gives. And while these stories are so comforting to me, a person who spent more time reading fairy tales than Shakespeare in their English degree, they are also a point of pain and anxiety.

For many of the very same reasons Amanda addresses in her gorgeous, winding book.


Kerry Seljak-Byrne: Once upon a time, a fairy appeared to a young school girl. But she did not critique her; she did not prevent her from following her dreams; she did not chastise her or make her feel less than for wanting wild worlds of magic and power. She was not there to reiterate the criticisms, pitfalls, the barriers of men. To grab power where she otherwise had none, over those younger and more vulnerable than herself. She was there, to say: whoever you are, and wherever you go, and regardless of what they say ... make yourself as free as you can, despite the lies they tell, and the barriers you face. My magic is with you.


And How We Ended Up There ...

Amanda Leduc: Believe it or not, I wouldn’t have always called myself a nature person. I like nature; I always have. Walking trails through the forest, lying outdoors under the sun, feeling the warmth of a star shining millions of kilometres away. Getting caught in the rain.

But I’m not a fanatic, you might say. I like the order that the indoors represents: a safe world, a world that I can understand. As I’ve grown older I’ve become more attuned to why this is. The tree roots that populate my hikes—the same tree roots that so enthralled my mother when she was a child, climbing and winding around them and imagining she was climbing the steps to her own fairy castle—bring not excitement, but worry; the darkness of the forest is at once exciting and also cause for concern. If I lose sight of my feet I will fall. If there is no path, I’ll trip at one point or another. And if I trip, any or all of the following might happen: I’ll wrench my back; I’ll twist the tendons in my right foot; I’ll stretch my toes in such a way that might take them a few days to recover.

What does it mean, I wonder, to write stories that invite others into the wilderness of our own lives? To carve a path through the wilderness, to tame so that one can also understand the wild?

The forest, in other worlds, isn’t a place that’s meant for me. At least not in its wildest, most unbridled form. But when a forest is cleared—when there are paths that wind, and a wilderness that’s calmed just enough to let someone in to peek at it—I am ready for all of the magic it might bring.

What does it mean, I wonder, to write stories that invite others into the wilderness of our own lives? To carve a path through the wilderness, to tame so that one can also understand the wild?


Amanda Leduc: Once upon a time, a woodcutter and his wife gave birth to a half-hedgehog, half-human boy they named Hans My Hedgehog—but instead of shunning their child and making him sleep behind the stove for seven years, they rejoiced in his difference, in the unique way that his life gave shape to the world. He became a skilled herder of goats and pigs and an incomparable flautist, and his charms won acclaim for their village from far and wide—so much so, in fact, that the king and his daughter paid a visit to the village to watch him play. The daughter and Hans My Hedgehog fell in love and married, and Hans My Hedgehog’s charisma and talent were the talk of the kingdom for generations.


Disfigured: A Discussion

KSB: In Disfigured, you talk about how fairy tales are simultaneously deeply personal stories while also being community-based, collaborative, and ever-changing. But you yourself also do this work, in the way Disfigured is constructed: oscillating between nonfiction, theory, history, memoir, and discussions of fiction. A blend of reality, of thought, and of story.

In a book that is ultimately about a lack of representation, or destructive representation, in fiction, can you speak to what it means to bring together all of these threads in a single essay? From the supposedly objective, to the deeply personal? And why was it an important form to embrace for this particular project, this conversation?

AL: For me, the form of Disfigured—and the events that brought it about—speak to the most magical parts of this book. I had originally intended for the book to be much more focused on literary criticism—an almost-but-not-quite academic look at the history of fairy tales and the way that they’ve woven around the narrative of disability in invisible and yet extraordinarily crucial ways.

Yet almost immediately in the course of writing it, the personal voice was there—my own experience, my own journey into the forest of disability and words and the stories we all tell. By the time I finished a draft of the first chapter I knew that the book was going to be different from what I’d originally imagined—something much more personal and thus much more slippery than the book that I’d envisioned.

This delighted me. It wasn’t until I reached the end of the first chapter that I realized what had happened: I had wanted to write a book of cultural criticism because I’d wanted to give weight to my own experience; to situate my disabled life firmly within a historical context, to legitimize my love of fairy tales and their connections with disability in a way that felt “official” and “important.” But I hadn’t thought that my own experience could have this kind of weight. Not initially. Magic was magic, yes, but how could it stand up to the power of history and fact? What did one narrative—mine—matter in the face of the structural power that fairy tales and other disability narratives have had in popular culture for so long?

What I began to realize, as Chapter One moved into Chapter Two (with—surprise!—more weaving of my own story), was that the entirety of Disfigured was at once speaking to and tearing down those traditional archetypes of story and language. Why do we love fairy tales the way we do—why do we tell them in the same ways, over and over? What is it about their rhythms and their cadence that delights us—and how, in weaving my own stories into a similar kind of fairy tale vein—was I making my own life into a fairy tale? How was I wresting a happy ending for myself out of historical pain and trauma? How was I doing this through the very same fairy tale structures that have so often left disabled people out?

In Disfigured I was braiding with many strands—my own disability story, the history of fairy tales, the interspersed experiences of other members of the disability community. By the time I finished the book I was calling it a fishtail—a collection of strands that came together in ways I hadn’t foreseen.

I was, as I found out, making my own way through the forest. There was no path in front of me and so I was forging one for myself. And it was a path (more delight!) with which I was already familiar. I’d been writing braided essays already for years—Disfigured was a braided essay-writ-large, a new form in which I felt wholly comfortable. (Traditionally, a braided essay is one that weaves together two seemingly disparate topics.)

In Disfigured I was braiding with many strands—my own disability story, the history of fairy tales, the interspersed experiences of other members of the disability community. By the time I finished the book I was calling it a fishtail—a collection of strands that came together in ways I hadn’t foreseen. There was cultural criticism, yes. There were doctor’s notes from my physicians. There was my own experience, and there were the experiences of others. And there were so many fairy tales.

I fought for interstitial chapters—tiny, untitled sections that sat in between official chapters. A long essay that wove through the book, tying everything together. That’s not really a thing that’s done, my publisher said initially. It only made me laugh.

Well, I said. Why not?


KSB: Once upon a time, oh, how those twelve pairs of feet hurt. How they ached and manifested sharp pains and said, now and then, no, no, no more dancing for you. But the girls wanted, and they wished, and they desired for the shoes that would let them, anyhow. Dance, dance any time, anywhere. The king wouldn’t let them, though. He scolded them, reminded them, it was their own fault. Their own fault for dancing when they shouldn’t. For ignoring the pain. For pretending it away. No, until they learned not to dance, until they learned to listen, they wouldn’t be getting any shoes. So they run away, at night. Into the forests of gold and silver and diamonds. Spinning in the leaves, in the dirt, over roots. And though their feet hurt still, aching, always, they knew—it is better to have pain and be free, than listen to those who would take what you love out of spite.


When The Mermaid Chooses Not To Sing

[CW: ableist language]

KSB: Ariel gave up her voice.

Ariel gave up her voice, and she’s stupid.

Ariel gave up her voice, and she’s stupid, and she did it for a man.

First: let’s linger on the fact that if you’re calling anyone stupid, you’re already in ableist territory. Take a step back. Think it over. Work it through. Find another word. But you don’t need one, for this. Because she isn’t; and the decision, really, isn’t as contemptible as you think it is. If you take another step back. If you think how ableist the contempt for this decision is in the first place.

I’m autistic. I’m also selectively nonverbal. Some days, I simply don’t speak. You see, the world is so loud already, it seems overwhelming to add my own voice to the milieu. Especially when there are so many other ways to communicate. I might not be able to get on board with Ursula’s ridiculously suggestive demand for body language (Disney, what?), but I also don’t get the allistic requirement for verbal contributions. Especially, when, frankly, so few allistic folk bother to say what they mean, anyway! Baffling. Just baffling.

So Ariel gave up her voice. So what. I promise you: sometimes it’s better to give up your voice. If you do it by choice. If it helps you move through the world in the way that you want. If you gain something from it: some comfort, some freedom, some control. The ridiculous part of this deal is not that she’s suddenly disabled in a very autistic way. The ridiculous part of this deal is she has three days to make some guy fall in love with her.

I promise you, that’s not something a voice can really help with, in a realistic sense. I also promise you that nonverbal people can fall in love, and be fallen in love with, like anyone else.

As for why she did it ... everyone likes to think it’s because of a boy. To this I ask: have you met her father? As an autistic kid who grew up in a one-parent, two-person family that was full of an angry parent’s rigid rules and consequences, I went to The Little Mermaid for respite. Because, in a household where I was often bullied for not speaking (Kerry’s throwing a tantrum again, Kerry’s being passive aggressive, Kerry’s going to need to speak to people if they’re going to get through life), watching Ariel get out of her household (similarly: a parent willing to threaten your possessions to get control?) by giving up speech was one of the best things I could hold onto.

And if the sea witch hadn’t added that extra bit? The bit about an unrealistic timeline on love? I’m convinced she would have been happy. She’s happy enough, isn’t she? Before the deadline starts to set in?

For Ariel, being nonverbal brought her joy. It’s something she chooses, to achieve a life that she wants. A life no one else thinks is even possible. Being above water meant being disabled, and it’s a choice that she takes willingly. Not just as a compromise, but as an act of living her life. Because that was the price. And the price paid below water, to live the life she wanted, was worth it.

I thought, for a long time, that if I was going to survive in an allistic world, I would have to mask 100% of the time. Speak on the days where words feel like they’re tied to the inside of my mind and weighted on the back of my tongue. And, often, I do. But on my best days, my most me days, that’s not the case. Because I’ve built a community of people who love and care for me not despite my disabilities (and there are a few of them!), but alongside them. Because living, really living, disabled is more powerful than drowning in a life that denies you your self.

You can give up your voice, without giving up your power.

Because living, really living, disabled is more powerful than drowning in a life that denies you your self. You can give up your voice, without giving up your power.


KSB: Once upon a time, Sleeping Beauty fell into a deep slumber, but it didn’t really matter in the end—her parents actually figured out how to advocate for her, got her the magic meds she needed, and she grew up to lead a kingdom that actively fought for accommodations to be implemented and iterated on as required. No non-consensual kissing required.

AL: Once upon a time, there was a young woman who lived with her stepmother and two stepsisters. Her life had been shaped by grief—first the death of her mother when she was young, and then the death of her father soon after his second marriage. But instead of shunning her after his death, her stepmother and stepsisters opened their hearts and let the woman in. The girls played in the attic and all through the rooms of their house, and the mice in the walls remained only mice. The pumpkins in their field were only ever pumpkins—for what need did the girl have of magical transformation in a world such as this? Maybe the girl grew up and married a prince—and maybe her stepsisters were her bridesmaids, rejoicing in her happiness. Or maybe none of the girls ever married, happy as they were with their own company, family and friends in a great large house together.


Why Would We Choose Such Forgettable Beauty

AL: I walk differently. I always have. Sometimes that difference is slight, sometimes it’s more pronounced. I have a lazy eye—strabismus, goes the official medical term—that bothers me whenever I see it in pictures. (In these days of pandemic video calls and presentations, I’m seeing it a lot.) And while I’m not a beast, per se—at least not in the traditional ways that we’ve conceptualized the term—there was a long time in my adolescence when I certainly felt that way. The Beast is alone in all of the stories. He might have his staff around to cook and clean for him—terrified, timid staff who creep quietly around, fearful of his rage—but the understanding in all of the tales is that he’s alone because he deserves to be alone, because he doesn’t know how to be kind to other people. He has been made ugly on the outside because he is ugly on the inside.

A fairy tale doesn’t feel like a finished fairy tale unless everyone’s beautiful at the end of it.

As a child, I waited for the ending of this story with a thrill that still sometimes sneaks into my viewing today. How deep it goes, the Beauty and the Beast narrative. The idea that you must be beautiful—or beautiful in someone’s eyes, if not the wider world’s—in order to be worthy of love. Inner beauty, yes, but we’d be lying if we didn’t also acknowledge that outer beauty has a lot to do with our expectations. A fairy tale doesn’t feel like a finished fairy tale unless everyone’s beautiful at the end of it.

As a child this made my heart expand with hope. But now, as an adult, it makes my heart shrink. Who defines beauty, anyway? How small does your world-building have to be if beauty is the currency that makes it go round?

In Disfigured, I wanted to look beyond the happy ending—to look at what makes our lives rich, at the struggles and sadnesses and realities that make us so much more than narratives that tie up with happy, beautiful bows. What does it mean to have the Beast in the Disney film go from having an unforgettable face to a face that’s almost bland in its beauty by the end of things? Why don’t we talk about that?

Who defines beauty, anyway? How small does your worldbuilding have to be if beauty is the currency that makes it go round?

I want my work, my words, my life to be unforgettable. I no longer want to blend in. And while I’d be lying if I didn’t acknowledge that my own differences still more or less fit within the realm of what is traditionally considered socially acceptable when it comes to appearance and beauty, I want the work that we do, and the fairy tales we read, to frame this in a new way. I want our definitions of beauty and beautiful—what makes a beautiful life—to keep on expanding. Fairy tales, despite their flaws, have given us rich fodder for reading and telling for centuries—the least we can do is expand our reading of them to make our world even bigger.

There is so much more to life than beauty. There is even, I would argue, so much more to life than happy endings.


AL: Once upon a time, a girl with magical hair was locked in a tower by a wicked witch—but instead of relying on a smitten prince to come and rescue her, she wove herself a ladder of her own hair and escaped into the night, using a knife to cut off her hair and discard it at the edge of the forest before vanishing into the darkness. Her own woman. Her own life.


 

 

About the author

Amanda Leduc’s essays and stories have appeared in publications across Canada, the US, and the UK. She is the author of the non-fiction book Disfigured: On Fairy Tales, Disability, and Making Space (Coach House Books, 2020) and the novel The Miracles of Ordinary Men (2013, ECW Press). 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.

Kerry Seljak-Byrne is a disabled, queer, trans, and autistic writer and editor living in Toronto. Their writing can be found in THIS Magazine, The Temz Review, and others. Otherwise, they are the Co-Founder and CEO of the Augur Magazine Literary Society, where they are the Aurora-Nominated Publisher of Augur Magazine and the Co-Director for the upcoming Canadian Speculative Arts Event, AugurCon. They love fairy tales so much, they almost did a PhD on them.