Books: Authentic Experiences of Disability in Young Adult Literature

Photo by Anna Shvets on Pexels.com

*Note: This piece first appeared in The Handy, Uncapped Pen in 2018.

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.

On the edge of gone by corinne duyvis

Image Courtesy of Amulet Books

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.

wonderstruck by brian selznick

Image Courtesy of Scholastic Press

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.

the mind’s eye by k.c. finn

Image Courtesy of Clean Teen Publishing

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.

Bibliography

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.


       

Disability Activism: Why Using Identity-First Language Empowers Me (But Doesn’t Have to Empower You)

A picture of me, a white woman with dark brown hair, a jean jacket, and white blouse posed next to a white fence with trees in the background.
Hi, it’s me! I figured putting a stock image on something sort of about me would be silly. But now I feel self-absorbed. There is no winning in this situation.

*An earlier version of this Op-Ed appeared in Quail Bell Magazine on December 21st, 2020.

Before I begin, I think it’s good to distinguish identity-first and person-first language…

What is the difference between identity-first language and person-first language?

Identity-first language refers to a person as disabled or some other direct way of acknowledging a disability of some sort. Person-first language is normally phrased as “person with Tourette’s” or “person who has a disability”. There are many reasons why people would choose one or the other. The main criticism of identity-first language is that it is dehumanizing or puts the disability at the front as opposed to the human with the disability. The main criticism of person-first language is that it fails to acknowledge the difficulties or realities of those with disabilities at all.

A pitfall I see with many well-meaning but nondisabled advocates is speaking on behalf of others without taking their opinions into consideration or researching what language might be best for them. For those who identify as neurodivergent (ADHD, autism, sometimes Tourette’s, etc.), many choose identity-first language to take pride in their differences. For those with more visible disabilities, they may want person-first. It truly depends on many factors since 26% of the US population has some sort of disability and the circumstances or stigmas behind them differ.

With Tourette Syndrome, I see a lot of people using person-first language, especially in posts from the Tourette Association of America. I think a lot of this has to do with the severity and visibility of people’s tics being quite visible. Because the disorder is so stigmatized, it is already hard to be treated as human beings as opposed to slapstick comedy routines or unfortunately, demon-possessed.

My Roadblock using identity-first language

Early last year, I published an article about an inclusive art center using identity-first language. When my article went live and was posted to various social media platforms, I expected at least a few negative comments. One commenter mentioned an interviewee’s tie was too short. For a while, I was pleasantly surprised that was the sole complaint. 

But that’s when I saw it.

“The one thing I will insist on is the person is an artist, who just happens to have a disability, never a disabled artist,” commented an older gentleman, who was involved with an inclusive arts center as well. To what capacity, I wasn’t certain, but I felt compelled to respond to him — politely of course — as to why I chose the language.

“I’m the writer of this piece. I am actually disabled as well, and many of us prefer identity-first language as opposed to person-first language because it is a core part of our identity. This isn’t true for everyone, but many of my disabled friends would also insist upon the same name.”

Others who identified with the language also chimed in to agree and share their own thoughts about how it felt right for them. His response?

“Sorry, but I too have a disability and my fellow artists share my thoughts. You create art, you are an artist. An artist who just happens to be what we are. If you want to make money off of pity, then by all means, do it.” 

I was taken aback by his statement. When I discovered more about disability rights, reading about identity-first language helped me to reclaim something about myself I had to keep hidden for so long. The idea that my use of identity-first language is strictly for pity is not only blatantly false, but hurtful. Finding identity-first language empowered me after years of being told to hide a big part of myself: my Tourette Syndrome. 

Why tourette syndrome is an important part of my identity

Approximately 50% of Touretters are not diagnosed until adulthood. I was one of them, wondering what exactly was “wrong” was me. 

I challenged his thinking. “I understand to an extent, but as a movement, we don’t see identity-first language as pity, but for understanding the normal differences between us, not a profit gimmick.” 

Though he never responded to my follow-up, I questioned my own reasons for using identity-first language. Was I really seeking pity? Not a chance — ever since I was a kid, pity has made me feel uncomfortable. When I tell people I have Tourette’s and they respond by shifting uncomfortably and muttering “Aw, I’m sorry,” it makes me feel icky. Identity-first language allows me to own my identity the way I wish after years of being denied the opportunity.

I hardly speak for every disabled person about what they should be called. Person-first or identity-first language are both valid ways of regarding someone with a disability…as long as they are comfortable with it. Different people will want to be addressed and referred to in different ways. A common mistake that does more harm than good is to speak for another person as opposed to honoring their wishes, and that includes anyone, including those with disabilities. 

More Information about identity-first and person-first language

Social Commentary: The Secret Life of Bees

*Note: First appeared on Quail Bell Magazine June 28th, 2015. Image by Andi Chrisman.

The Secret Life of Bees  is a favorite among book clubs and English classes for its themes of motherhood, spirituality, and racial tension during the Civil Rights Era.  But the book also addresses problems we still see today: hidden biases.

Though Lily, the fourteen year-old white protagonist, has grown up with her black mother-figure Rosaleen and is considerably kinder to her than her father T. Ray, she still falls victim to the thinking of her time. When she meets August, one of the three beekeeper sisters that Lily and Rosaleen find in Tiburon, SC, she is shocked to discover that August is in fact, very intelligent and well-read.

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Essay: Sophie Scholl and the White Rose (Die Weisse Rose)

Note: First appeared on Quail Bell Magazine April 1st, 2015 in honor of National Women’s Month, as well as GirlSense and Nonsense, MCXV, and in Her Plumage: An anthology of women’s writing from Quail Bell Magazine.