When other children have asked me about Rachel and Janneke’s disabilities, I’ve often used the words, “Their bodies work differently from yours.” My intention in those situations has been to simply acknowledge the difference. But more recently, I’ve been reflecting on how we as adults interpret or even contrive differences.
In the beginning
“It is through stories that we give shape to and understand the world – and historically, it has been through stories that we’ve first given shape to difference.” So begins Amanda Leduc’s book Disfigured: On Fairy Tales, Disability and Making Space. Leduc is a Hamilton, Ontario author who has cerebral palsy; her book weaves her own memories with a critique of stories over the centuries, challenging us as readers to see how disability has been unfairly framed and thus stigmatized through storytelling.
“As a young girl growing up in southwestern Ontario, I found royalty easier to believe in than mutation, mutant though I was. Stories of princesses and kings were what I saw in books and on TV”. (p.192)
Yes, stories ought to help us glimpse other worlds and different experiences, but we also need characters that we can relate to. By the time Rachel and Janneke were born, I started searching for stories about kids in wheelchairs (Robert Munsch’s Zoom!). I wanted to find an alternative to the prevailing narrative of normalcy.When Disney’s mermaid Ariel needs to overcome her inability to use her legs – and later her voice – to be liberated, what message is offered to girls like mine who use wheelchairs for mobility and their eyes and hands to communicate? (Never mind Ariel’s liberation is found in marrying a prince. That’s for another column.)
“It is the world’s responsibility to make space for my body, my words, my lopsided gait – our bodies, our words, our ways of moving through the world – to hold my childhood dreams of being a princess and a superhero close and help me understand there is no need to want to be either. To start telling different stories about a body that might just look like mine, and reshaping the world to fit them . . . Denying the lived reality of what it means to be a disabled body in the world denies the possibility of growth on the disabled person’s terms . . . the disabled body can be a hero. And there needn’t even be a quest for them to prove it.” (p.205)
To be seen and known
Occasionally, I will hear hesitation about changing the phrase “special needs” to the word “disability.” When did we decide disability was a harsh word? I can’t help but think we’ve understood this collectively in our culture through the stories we’ve been told. Why are the villains disfigured? Why are the princesses beautiful? Rather than reinforce stereotypes or create stigma, stories should build capacity for empathy and compassion as well as nudge us to confront our own humanity. The use of storytelling and literature is a powerful way to help create a mindshift, a metanoia of sorts, in thinking about diversity and disability. (Cue the new Marvel movies that feature sign language!)
“We must respect and understand what words do in the world so that we can begin to do the work of unmaking the fairy tales we’ve told about disability for so long . . . To envision a fairy tale and a world where the environment isn’t hostile – where the protagonist with the different body and the different way of being in the world can triumph not because of the obstacles they overcome on their own but because of the community that helps to pull them through.” (p.225)
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