Disability is not a monolith- every disabled person’s experience in the world is different, and the way that we all navigate the world is likewise varied and complex.
This is one of the most beautiful books I have read in years. Fairy-tales are a part of our lives, serving as a model for modern day stories, often as lessons in morality, a warning, a guiding tale that even smacks of those early after school specials my generation was so fond of. Then there are the romances, a foundation on which so many little girls have built their castles, with a Prince waiting to save them. Beautiful girls, at least. What exactly is the measure of beauty? In nearly all of the well known tales, it certainly isn’t any character who has a disability, unless of course it is conquered, all that spell breaking, true love’s kiss, shucking off the ‘deformity’ or ‘madness’ or ‘disfigurement’. Disfigurement is only enchanting if it is has a use for the ‘able bodied’ narrative, and it’s often not something the ‘able-bodied’ think about. Amanda Leduc dissects many of the familiar fairy tales, and lesser known ones, to shed light on how the disabled are used, abused, or downright invisible in such stories. It’s eye opening, and disheartening. Growing up with Cerebral Palsy, Amanda certainly didn’t see any stories about little girls with her hospital stays, operations, struggles. Princesses only twirled with balletic perfection, they sure weren’t in wheel chairs, and if any characters had a disease or deformity, they were either evil, cursed, or imbeciles who are lucky to be mentioned at all. The goal is often landing the Prince or taking one’s rightful place on the throne, but it is always about golden beauty because anything less won’t procure a happy ending. How could anyone have a happy ending if they have a chronic illness, a disease, a disability, and don’t get me started on mental health? Happy endings while deformed? The horror of it!
While this book explores the theme of disability in fairy tales, it is Leduc sharing how she has felt, and feels now, about her place in the world as defined by others, and herself. A child can have the most loving parents, but that child still must go out into the world, and face condescending attitudes, pity, cruelty even in our current time of awareness, (it is still half-assed awareness, though). Often, the person who has a disability or illness is meant to feel like it’s a special boon to be offered the same treatment the able-bodied receive. Maybe there are teaching moments, but does anyone you know want to be a poster child every waking moment of their life, or feel like a curiosity? For their body to be a horror story for another, one they just could’t survive if they had to reside in it? A big moment that hit me like a gut punch in the book is the idea that only in overcoming, ignoring everything from mental illness to very real pain and obstacles makes someone worthy because damn, it’s only a good life if the curse of sickness or imperfection is lifted! How is that for reality? Why should the world accommodate you, don’t you want to be just like the rest of us? Why are you so different? It is true, people equate disease, illness, disability, disfigurement as weak. Try harder! Rally around yourself! Go out in the sunshine! Sure…
My son grew up under the umbrella of autism, he didn’t look like he had struggles (what does that mean) and a label didn’t help as much as it should have, in fact often once educators knew how to define him, well he was no longer an individual, just an autistic. Some people meant well, others not so much. There were kind children, well meaning adults but attitudes tended to shift in the negative, with mocking, laughter, and exclusion, a forced feeling of isolation. Amanda’s story about her school journal made me heartsick, a violation as brutal as the wing scene in Maleficent. These things stick, we carry them with us. There are still hard times, he graduated college but still has obstacles, in real life unlike in fairy tales, there isn’t some spell that collecting the right ingredients will break, nor a quest that will allow some god or fairy to shine their benevolence upon him anymore than on the people who face each day of their life with their disability, illness. They aren’t asking for a gold star, special treatment, is it special treatment to be afforded dignity, accessibility, to be heard when speaking, understanding beyond a parking space or a toilet stall (that, let’s face it, more often than not is occupied by able-bodied folks)?
Disfigured is one of the most provocative books on disability I have read and I admit ignorance, there were connections I never thought about in the same light as Amanda. We are moving forward though at a snail’s crawl. I remember a commercial recently for a store selling Halloween costumes for children in wheel chairs, and I thought that is fantastic and yet ‘long overdue’. I fell the same about commercials serving as campaigns for acceptance showing skin with scars, freckles, vitiligo and how my daughter would have benefited from that when she was a little girl and at school was harassed by one constant question, ‘what is wrong with your skin.’ Inclusion is still a fight, resources are incredibly lacking in the school system alone, training isn’t always available, some schools push you to keep your kid separated not because it’s easier for the student but easier on everyone else, you think the adult world of disability is better? Amanda Leduc is right, who has fought more for everything they have? Why can’t they be represented in stories that children can look up to, beyond being a curse that love can fix, only of value when the disability or disfigurement is no more? Maybe with more voices being heard, the world can change, rather than push conformity.
This is a book everyone should read. Positive affirmations have their place, say if you have a cold, but this grin and bear it nonsense aimed towards people coping with obstacles so many of us cannot fathom just minimizes many lives, reduces real flesh and blood people. There is no shame in disability, different isn’t a tragedy and certainly our stories should include all of humanity. Happy endings, if we’re honest, don’t end in broken curses. Life is ups and downs, ill health, good health, loss and gains. There is no shame in needing medication, mobility aids, therapy… the shame is that it has been circulated as a tragedy, a horror story, a lesson in badness, evilness or that beauty is only one thing, ‘able-bodied’. My review does not do justice to the insights Amanda Leduc shares, absolutely read this book!
Publication Date: February 4, 2020
Coach House Books