Friday, March 30, 2018

Authentic Experiences of Disability in Young Adult Literature by Gretchen Gales

It may not be hard to find literature featuring characters with disabilities, but it can be difficult to find good literature portraying disabled characters. After all, if society still rampantly promotes ableism, its presence in literature and pop culture are not too far behind. From problematic classics such as Of Mice and Men and Frankenstein to modern books such as Me Before You, the availability of inauthentic experiences with disabilities is unfortunately higher than more accurate portrayals of disabilities. In an effort to promote more diverse and authentic texts about disability, particularly in young adult literature, I wanted to examine three young adult novels featuring protagonists with disabilities: On The Edge of Gone by Corinne Duyvis, Wonderstruck by Brian Selznick, and The Mind’s Eye by K.C. Finn.
 
 Duyvis’ On The Edge of Gone is an incredibly diverse science fiction piece featuring a main character who is biracial and autistic. In a dystopian society, Denise must prove her own worth to the inhabitants of a generation ship leaving a shattered Earth. The book explores how people are classified as “useful” or “valuable” in society, and people who are disabled or neurodivergent are typically cast aside because they do not possess neurotypical or able-bodied traits. As opposed to many novels with autistic characters, the plot is advanced by actual events or other characters as opposed to the character’s autism.  Instead, Denise must keep track of her mother, who is an addict, and must find her trans sister Iris, all while trying to prove she is worth saving.
       
The author is also autistic, making the authenticity of the experiences Denise has in the book more reliable. But the humility of the author is also key to the novel’s appeal. In an interview with Disability in Kid Lit (2016), Duyvis noted her own tendencies to place autistic tendencies in the novel without a clear explanation of why Denise felt a certain way. On The Edge of Gone is also quick to show that while Denise is autistic and suffers from severe anxiety, she must develop her own coping mechanisms in order to survive.
     
Denise has a decent grip on her coping skills and built-up tolerance to less-than-understanding people in her life, which is why she acts more maturely and sensible than her own mother, who is shown to be selfish and irresponsible on more than one occasion. The beginning of the book (2016) shows her mother wasting the time they have left to get to their pre-approved shelters to stall for Iris as Denise urges for them to leave and get to shelter before it is too late (Duyvis, pg. 10) . When her mother is kicked off of the generation ship, she tries to guilt Denise into smuggling her back on board without taking any time to consider how it puts both Iris and Denise at risk of losing their own resources (Duyvis, 2016, pg. 222) . Denise’s narrative is a much different approach than what many see in books with autistic characters who are often cast as burdens on their families and society. Because of the stigma of autism, Denise has long had to adapt to neurotypical people around her to blend with the world around her.
     
While Duyvis has first-hand experience with living with neurodivergence, many authors attempt to portray disabilities without the same personal experiences or knowledge.  Though Selznick does not have firsthand experience with deafness, he manages to create a very thoughtful literary experience reflecting the lives of people in the deaf community with extensive research. What results is Wonderstruck, a novel and graphic novel cross-over that touches on many important themes and topics: disability, grief, collections, visual aids, and many more. The novel switches between two characters’ stories: Ben and Rose’s. Ben is a boy living in Gunflint Lake, Minnesota in 1977 while Rose is a girl living in Hoboken, New Jersey in 1927. Both characters are deaf and must navigate through a world that does not accommodate their needs, but insists on as much conformity to able-bodied culture as possible. Wonderstruck switches between the 50 year period with two distinct but intertwined stories, both with the same surprising amount of obstacles related to their deafness.
     
Collections are also shown to be a major topic in Wonderstruck. Ben’s mother was a librarian and he keeps old trinkets of hers in a wood-carved box. He carries them around with him, which represents who he is and where he is from without writing or speaking about it. Rose collected pictures and newspaper clippings of her mother in scrapbooks and made many skyscrapers out of paper to bring an inaccessible city directly to her (Selznick, 2011, p. 38-39). Like Ben, Rose uses visual expression and symbols to communicate with others, even when they want her to use a method that is more convenient for someone else. Both Ben and Rose are connected to the Natural History Museum, both through familial ties as well as a shared joy of seeing information presented in a way that is accessible for both of them. Themed exhibits cluster related information and objects together the same way Ben and Rose collect their own information.
   
Wonderstruck does a particularly good job with demonstrating how advancements in technology are not always the best means of assisting people with disabilities. It also features a significant scene where technology sets Rose’s character back. In order to “spend time” with her mother Lillian Mayhew, Rose goes to the movie theater to see her silent films. To Rose’s horror, the movie theater is about to install “Talkie” equipment, which enables movies to be both seen and heard without the supposed interruption of word cards on the screen (Selznick, 2011, p. 142). For people who can hear, this is considered advancement in innovation. To Rose, it is a shocking setback that not only further isolates herself from her absent actress mother, but at chances to enjoy activities that people who are not deaf can as well. Another way Rose is pressured into blending in with people who are not deaf is through lip-reading. Rose hates being pressured into learning how to read lips, and defiantly makes another skyscraper out of her lip-reading curriculum book, a rejection of the standards that people with hearing place on people who are deaf (Selznick, 2011, p. 191). Like Duyvis’ book, Wonderstruck challenges what it truly means to be disabled, demonstrating a wide variety of ways disabled people cope with a lack of accommodations from a young age.
       
My quest to find more books similar to Duyvis’ and Selznick’s was harder than expected, even with my specific calls and searches for these type of narratives. I would often find plenty of books featuring characters with disabilities, but were riddled with ableism. Books that had ableist narratives were — surprise, surprise — not written by authors who have first-hand experience with the disability they are writing about. Finally, I found The Mind’s Eye. Labeled as a “paranormal romance”, it stars Kit Cavendish, a girl living in 1940 sent to live in Wales during World War II. Kit possesses telepathic powers but is also a wheelchair-user due to M.E. / C. F. S., a neurological condition that causes pain, fatigue, and sometimes paralysis. Her powers lead her to a boy in Oslo named Henri, who is attempting to escape from Nazi occupation in his village. It is the first book in a series (the SYNSK series) written by UK author K.C. Finn (2017), an author who knows about ableism in young adult literature all too well.
     
“It irritates me when you do find characters with disabilities are there because it’s a gimmick. It’s a hindrance and it is never to their advantage,” she told me. I was pleased to find that Kit’s powers were instead genetic and were in no way connected to her condition. In later chapters, it is revealed both of her parents as well as her brother possess the same telepathic abilities. Finn also does not dwell on Kit’s character for the series, but instead features another member of the family for each book, including her younger brother Leighton. In The Mind’s Eye, we are first introduced to the family’s powers while also witnessing Kit’s grueling rehabilitation process for her paralysis. While Kit’s condition is a large factor in the book, it is not the driving force for the events that happened. Instead, the driving factors were the intelligence she picked up through her telepathy, creating relationships with the rest of her safe house family at Ty Gwyn, and helping Henri escape, and the war itself.
     
When speaking with Finn (2017), she made it clear that the importance of having a strong connection to a disability before writing about it. “When it comes to disability and diversity, the most important thing to me is that when writing about those topics is that comes from somewhere real. It’s best to have real personal experience of the disability or have someone close to you in your life with the condition.” That is what makes finding good narratives on disability difficult; people often want to “help” by writing an inspirational story about someone with a disability without consulting someone who actually has the disability. Though all three books featured have protagonists with very different disabilities, all three bring accurate narratives to what having a disability is actually like while maintaining a firm sense of humanity.

Biography: Gretchen once wanted to be a veterinarian, Shania Twain, and a writer all at once. She has since settled with creating a variety of written and artistic works. Gretchen's written work has appeared in Bustle, Ms., The Establishment, and many others. She is currently the managing editor of Quail Bell Magazine. See more of Gretchen’s work at writinggales.wordpress.com.

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Bibliography
·         Ada Hoffmann, Jessica Walton and Corinne Duyvis. (2016, March 24). Interview with Corinne Duyvis about Otherbound and On the Edge of Gone. Retrieved December 10, 2017, from http://disabilityinkidlit.com/2016/03/24/interview-with-corinne-duyvis-about-otherbound-and-on-the-edge-of-gone/
·         Duyvis, C. (2016). On the Edge of Gone. New York: Amulet Books.
·         Finn, K. C. (2017, December 8). Skype Personal Interview.
·         Finn, K. C. (2015) . The Mind's Eye. The Colony, TX: Clean Teen Publishing.
·         Selznick, B. (2011). Wonderstruck. New York: Scholastic Press.

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