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Musings: Disfigured: On Fairy Tales, Disability, and Making Space by Amanda Leduc

 

cover of Disfigured by Amanda Leduc

Disfigured: On Fairy Tales, Disability, and Making Space by Amanda Leduc ( Bookshop.orgAmazon.com  )

Coach House Books, 2020

ISBN-13 : 978-1552453957

Available: Paperback, audiobook, Kindle edition

 

Although Disfigured  focuses on the relationship between fairy tales and disability, there is a lot here that should provide food for thought in the horror genre, where disfigurement, disability, and illness are often used to indicate otherness, villainy, or monstrosity. Leduc examines well-known, mostly Western fairytale archetypes from literature and pop culture, how and why they were created, and the damage those narratives can do to perceptions and treatment of disabled individuals, using a disability rights framework. She explains that this is not a work of  fairy tale scholarship or of an expert on disability rights, but that she approaches it as an individual who has loved fairy tales for most of her life and is physically disabled, with major depressive disorder. As a white disabled woman, she notes that her ability to comment on the impact of Western fairy tale narratives is limited, and that there needs to be space for and attention paid to the perspectives and experiences of disabled people with multiple marginalizations about the impact these narratives have had on them as well.

Interspersed with her research and analysis are medical notes taken by the doctor Leduc’s parents consulted regarding her diagnosis and neurosurgery at the age of four, and autobiographical writings describing her childhood and young adulthood and how storytelling and fairy tales impacted her. This is an interesting structure, which personalizes the book, but it does lead to an idiosyncratic organzation of the material, with a fair amount of repetition. Leduc writes that “disabled identity is… inextricably bound up with how someone navigates the world,” literally, in her case, as she has cerebal palsy. Who tells her story and how cannot help shaping her view of who she is and will be, and the stories around her, and many other disabled people, also give them messages about their places in the world. As a child, many of those stories are fairy tales. Leduc writes that “we have used this storytelling form to illustrate that which is different; whether that difference is disfigurement or social exclusion, fairy tales often centre in some way on protagonists who are set apart from the rest of the world.”

In some stories, like “Hans My Hedgehog”, the protagonist, who is half-hedgehog, is treated cruelly and excluded as a child, even after he leaves home, excels, and shows himself to be generous. It is only after he is accepted by a princess in his half-hedgehog form that he reveals that he is actually a handsome young man. His transformation into an attractively formed man is his happy ending. Characters who are disfigured, disabled, or part-human(either born that way or as a punishment) often have this “happy ending”, (if they get one) that implies that there can be no happy ending without individual transformation to a fully functional, attractive human, even if a price must be paid. Leduc suggests that while that is a destructive message in general, it is particularly damaging to disabled people who grow up with fairy tales. In these stories, society doesn’t become more accessible; it’s the individual who must change, and sometimes that change isn’t possible (or preferable) on an individual level.  Leduc does a nice job of explaining different models and theories of disability, such as the medical model, charity model, psychological theories, social model, and complex embodiment (although not all in the same place. I suggest lots of bookmarks for this book).

Leduc says stories can be told in a way that calls for community and social structures to change so that anyone can succeed, or they can be told in a way that privileges individual triumph. She contends that under the surface, we have been taught through our stories that to be disabled is to be lesser, filled with darkness, and in pain, and therefore unhappy. Even when fairy tales have been written subversively, to encourage the disenfranchised, disabled people have still been represented as either pitiable, inspirational, or villainous. Leduc concludes that in real life, a disabled person isn’t necessarily transformed for a happy ending or permanently villainous. There is a complex, lived experience in the disabled body that isn’t represented by flattened archetypes and ableist language and symbolism, and she calls for envisioning these traditional stories in ways that make space for a new kind of fairy tale that does not privilege able-bodied, conventionally attractive characters or assume that happy endings are all identical.

Horror and dark fiction face some of the same issues. Protagonists are often set apart from the community by some kind of flaw, monsters and villains are often masked, disfigured, or disabled in some way, and the stories can have flattened characters or depend on “shortcut” tropes to quickly communicate a story’s schema to a reader or watcher.  Leduc examines this through the lens of Disney villains and heroines, and superheroes, but in the horror genre we see it in many of the great villains and protagonists of horror and Gothic literature and cinema such as the Phantom of the Opera, the Invisible Man, Frankenstein’s creature, Quasimodo, and more. Just as horror and dark fiction are making space for more versatile representations and stories with BIPOC characters and authors, we need to ensure that there is also space for new kinds of representations and reimagined stories with disabled characters and authors (and also where those intersect). There is food for thought here for those creating and consuming in the horror community.

Be cautioned that this is a long book, however. Leduc’s personal story is interwoven in many places so that it’s hard to skip around to just find the analysis and commentary on fairy tales and how they fit with the disability rights framework. This is deliberate, and while it’s interesting as a memoir, if you plan to use this book as a reference, it can get frustrating. As a disabled person who has been a children’s librarian and elementary school media specialist, has a Disney-obsessed daughter, and has been thinking about how disabled people are represented in horror fiction for quite some time, I found this to be a worthwhile and fairly unique read (Amazon shows me just one other book on this topic, a more narrowly focused academic study, and only a few on disability and horror), and it’s an intriguing topic, so I hope it is finding its audience. Recommended.

 

 

 

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Book Review: End Times by Rio Youers

End Times by Rio Youers
IUniverse, 2007
ISBN: 0595437869
Available: Hardcover, paperback, audiobook, MP3 CD

 

Scott is a man who has lived a hard, sad life. He suffers from an addiction to heroin. He is missing all of the fingers on both hands, and has to make do with only his thumbs, a fact that is disturbingly presented throughout the book. He is working as a journalist with peers who he doesn’t really like, and who don’t like him. The only thing good in his life seems to be his friend Sebby, a quadriplegic that Scott met at a drug rehab program. Then Mia, a mysterious Indian girl, steps into his life and changes everything. She sees him as he is, and still seems to love him. Mia becomes like a drug to his troubled mind, an addiction that he just can’t quit thinking about. Everything seems to be going his way until he finds out who Mia is– a dangerous mystery from his past that has come to the present with the purpose of making him pay for what he did to her. The story follows Scott from his life as a bum, trying to eke out an existence on the hard city streets, to his joining a dangerous and twisted cult that requires horrible sacrifices for their god, Voice, and then to his life as a writer and his journey into self-discovery and destiny. The story is written in first person, and is filled with pain and longing. At first I couldn’t stand the main character, his world and views being a far cry from my own, but as the novel progresses, he seems to change, becoming a character that I began to relate to and sympathize with. All of the characters are created with the utmost depth: they are dark and believable. This book touches on all the emotions. As I read Scott’s tale I felt his pain, love, hatred, longing, fear, and humor. End Times is a brutally unique work that surely deserves a place in any library, whether public or private.
Contains: Violence, Sex, Self Mutilation

Review by Bret Jordan

(Note: End Times is now in print available at Amazon.com)

Booklist: Invisible Disabilities in Horror for YA Readers

Disability is one way that monsters are created in the horror genre. Monstrosity is usually expressed visually, though, especially in the classic texts– think The Phantom of the Opera, the Hunchback of Notre Dame, Mr. Hyde of Jekyll and Hyde fame. Or if we don’t actually see the disfigurement, many monsters, from the Phantom of the Opera to Michael Myers, are masked.  Physically marking a character is a way of representing that person as the “other”; abnormal in some way, which is disturbing to those who see themselves as “normal”. It is a problematic representation of disability in literature, and I think we see it more strongly in the horror genre because for so many people it is disturbing and scary to face anyone who isn’t like them. Mary Shelley’s description of Frankenstein’s monster and his friendship with the little blind girl is a perfect example of how dependent we are on sight as a cue to decide who is a monster and who is not.

 

What about the disabilities that aren’t immediately visible? Yes, those do very much exist, and shape personality. Putting aside the curse of paranormal abilities, like the”Typhoid Mary” powers Jenny Morton displays in Jenny Pox, disabilities and disorders that can’t be seen do appear in horror, especially as victims. What’s really neat to see is when a character with an invisible disability flips that trope over.  But honestly, as someone who has epilepsy, I can tell you that ANY recognition of my disability that appears in fiction, no matter how problematic, has always been welcome (even when I hate the depiction) because it means I’ve been seen. And it meant even more to me when I was a teen, because there really was absolutely nothing at all. Here are five books you could hand to a teen dealing with an invisible disability.

  A Head Full of Ghosts by Paul Tremblay

This is not technically a YA novel, but it is told from the point of view of a young woman, with extensive flashbacks to her childhood, and the central character is a teen dealing with… we don’t know exactly what. Teenaged Marjorie might be possessed, or she might be developing schizophrenia. It is actually possible to meet someone with schizophrenia and not know that’s the case. And as far as I remember, schizophrenia is not mentioned outright, even though Marjorie is under the care of a psychiatrist at the beginning of the story. This is actually one of the more visual depictions of an invisible disability, as Marjorie’s actions also suggest that she might be possessed, which lands her family on a reality television show.

  A Great and Terrible Beauty by Libba Bray

This is the first book in the Gemma Doyle trilogy. It’s almost an trope for a British girl who grows up in India in the late 1800s to be sent to England for further education after her mother dies, usually at a boarding school, and that’s what happens to Gemma, who is also clairvoyant. She and her friends discover an entrace to magical realms where they can have their hearts’ desires– darker than it sounds. One of Gemma’s friends, Pippa, has epilepsy, and during a seizure travels to the magical realms. Pippa must keep her epilepsy a secret, so she won’t be discovered to be “damaged goods” before she can be married. Gemma follows her, but Pippa has found true love there and refuses to return to a life of illness. Pippa’s story brought tears to my eyes. I found Bray’s straightforward descriptions of Pippa’s seizures to be accurate, although you should never put a wooden spoon in anyone’s mouth.

 The Dark Between by Sonia Gensler

I’ve just finished this one, and I really recommend it. It also takes place near the turn of the 20th century, when spiritualism was in vogue. Three teenagers brought together by coincidence turn out to have more in common than they expected come across some mysterious murders that might have something to do with electrical experiments to enhance the brain with psychic powers. Kate, the youngest, is an impoverished orphan who loses her job as a “spirit guide” for a medium when the medium is exposed by a skeptic. Asher is an American teen at loose ends, traveling alone, who is considering attending Cambridge. Elsie is a dreamy, beautiful girl who has been sent away by her parents, whose mind is clouded by drugs she takes to control her epilepsy. Elsie’s seizures began after she was struck by lightning, and she can see visions of the dead during them. The attitudes Elsie has faced and expects to face after the secret of her epilepsy is exposed, and her drugged feelings, make her a more sympathetic character than you would expect, as she is not especially thoughtful or rational. Elsie is no Beth March, shy and pure; she’s drawn as a complex character, a real girl with burgeoning sexuality and intense emotions who makes bad decisions that make you want to smack her. Score one for Sonia Gensler in her development of a character with epilepsy who has more than one dimension.
 Dark Muse by David Simms

Muddy, Poe, Otis, and Corey are The Accidentals, a band of misfits. All four love music, and all four have problems they have to face. Muddy is dyslexic, Poe is legally blind and has a difficult home situation, Otis has brittle bones, and Corey has a checkered past and is a year behind in school. When Muddy’s older brother Zack, a troubled and gifted guitarist, disappears at “the crossroads”, Muddy and the rest of The Accidentals decide to cross over to an alternate reality where music has real power, and find him. Author David Simms has worked with many special education students, and draws realistic, sympathetic portraits of his characters. It’s cool to see ordinary, music-loving kids with disabilities as the heroes of the story.

 

 Cryer’s Cross by Lisa McMann

Sixteen year old Kendall has obsessive compulsive disorder. She’s been able to function in a carefully constructed world, and that begins to disintegrate when a girl disappears, and then, shortly after that, her boyfriend. Did Kendall have something to do with the disappearances? Or will her obsessiveness lead her to become a victim? Kendall is a very sympathetic character struggling with a difficult situation that is complicated by her obsessive compulsive disorder.