When Representation Falls Short: Disability in Literature

I was 12 when I finally read about a character with a disability.  I immediately felt a connection with Colin Craven from Francis Hodgson Burnett’s 1911 classic The Secret Garden because I was born with Cerebral Palsy, a movement and muscle disorder that affects my legs.  Here was a fictional character that wore orthotics and used a wheelchair. While I felt validated at first, that sentiment began to sour with age as I began to notice how the author’s word choices and plot decisions did more to perpetuate society’s negative view of people with disabilities.

When readers first meet Colin, he is purposely closed off from the rest of the Misselthwaite residence and bed-ridden. For a majority of the novel, he is a spoiled, self-pitying child who refuses to believe that anything can be done to improve his quality of life or that he can live a fulfilling existence if he so chooses. That is until his cousin shows him how tending to a garden can act as an outlet to heal.

As the secret garden grows, Colin’s physical form gets stronger as well. He even remarks, “Now that I am a real boy—my legs and arms and all my body are so full of Magic that I can’t keep them still” (Burnett, 1911, p. 202). This line reveals an assumption that people with disabilities, visible or not, don’t have value unless they’ve been cured.

For many, however, a disability is either something they’re born with or it’s been acquired later in life. It cannot be magically “fixed”, as Burnett’s novel would suggest, and to imply that people with disabilities need to be fixed in order to live a meaningful life is extremely harmful.

According to a 2018 report from the Annual Disability Statistics Compendium, people with disabilities make up approximately 13.2% of the U.S. population (Institute of Disability, University of New Hampshire, 2019, figure 1). That’s about 40 million of us!

Why don’t we see this incredibly large community reflected positively in fiction?

From my perspective, characters with disabilities are often relegated to roles such as the best friend or villain who ultimately helps motivate the main (typically able-bodied) character. They are presented as individuals who view themselves as defective or exist in a constant state of displeasure. But, perhaps the most damaging aspect of literary representation for people with disabilities lies in the endings we’re given.

I’ve come across multiple stories in which the disabled character is either killed off or commits suicide. The best-selling romance novel Me Before You by Jojo Moyes received a wave of criticism after it’s main character, a man with Quadriplegia, dies by assisted suicide. In an article for The Guardian, Ryan Gilbey writes about the 2016 movie adaptation that incensed the disability community and places a spotlight on poor representation in films, too. Our cultural view of disability will not change if these horrific messages persist across all mediums.

On the bright side, with the help of social media, readers are demanding that things change. They are actively seeking out books with better representation. Taking it a step further though, we need to encourage writers to create stories and characters that more accurately represent the diverse world we live in.

If you are interested in learning more about disability representation in literature, I recommend Disability in Kidlit, which features reviews, discussions, and interviews that hope to spread awareness. 

Which books do you believe accurately portray people with disabilities in a positive light?

And to my younger self, I’d tell her that Colin paves the way for better representation. She, along with others, have the ability to create those characters if they choose.

References:

Burnett, Frances Hodgson. (1911). The Secret Garden. New York, NY: Barnes and Noble Books.

Houtenville, A. and Boege, S. (2019). Annual Report on People
with Disabilities in America: 2018. Durham, NH: University of New Hampshire, Institute on Disability.

Gilbey, Ryan. (2016, June 2). ‘I’m not a thing to be pitied’: the disability backlash against Me Before You. The Guardian. Retrieved from https://www.theguardian.com/film/2016/jun/02/me-before-you-disabled-backlash-not-pitied

Goodreads. The Secret Garden. [Photo]. Retrieved from https://www.goodreads.com/book/show/980779.The_Secret_Garden

JasonTLow. (2016, January 26). Where Is The Diversity In Publishing? The 2015 Diversity Baseline Survey Results. [Blog post]. Retrieved from https://blog.leeandlow.com/2016/01/26/where-is-the-diversity-in-publishing-the-2015-diversity-baseline-survey-results/

Book Review: A Little Life by Hanya Yanagihara

Published: March 10th, 2015 by Doubleday.

Format: Hardcover, 720 pages.

Goodreads Summary: When four classmates from a small Massachusetts college move to New York to make their way, they’re broke, adrift, and buoyed only by their friendship and ambition. There is kind, handsome Willem, an aspiring actor; JB, a quick-witted, sometimes cruel Brooklyn-born painter seeking entry to the art world; Malcolm, a frustrated architect at a prominent firm; and withdrawn, brilliant, enigmatic Jude, who serves as their center of gravity. Over the decades, their relationships deepen and darken, tinged by addiction, success, and pride. Yet their greatest challenge, each comes to realize, is Jude himself, by midlife a terrifyingly talented litigator yet an increasingly broken man, his mind and body scarred by an unspeakable childhood, and haunted by what he fears is a degree of trauma that he’ll not only be unable to overcome—but that will define his life forever.

Thoughts: I didn’t know what to do with myself after finishing this novel. My heart is still heavy with a sorrow so profound that it has enveloped me. It took me six months to complete this story, and I have no regrets.

Although this novel follows the lives of four friends fresh out of college, you will learn quickly that the story centers mostly around Jude. He is the most secretive of the bunch and must carry memories full of terror and devastation that latch onto him like a parasite. I hadn’t discovered this novel until about a year after it was published and realized that it had made its way onto the bestsellers list for 2015. Unlike many others, I went into this book completely blind after hearing such high praise from reviewers and readers alike. Everything about this story is devastating. The story, characters, and prose have been permanently seared into my mind. Fair warning: This book is not easy to digest. It contains references to self-harm, physical and psychological abuse, sexual abuse, and other triggering subjects. The story has received some criticism for being too harsh.

With all that said, the darkness presented by this story doesn’t make it any less beautiful. Hanya Yanagihara has written a book about life in it’s most raw and unsettling form. This is a story about the importance of friendship and how much power it does and doesn’t have. The friendships layered within are steadfast, broken, envious, and above all, honest. I suggest that you read this book slowly because it’s woven together so intricately. It’s a work of art, really. I have heard some readers complain about the sheer size of this book, but I believe that every word has a role, and it all works together to create a story that is utterly poetic. From the first page, it’s easy to become enthralled in the story of Jude, Willam, Malcolm, and JB, with the people they meet along the way.

“Wasn’t friendship its own miracle, the finding of another person who made the entire lonely world seem somehow less lonely?”

This is not a book you can just pick up and read. It requires your utmost attention and will fold your insides in on themselves until everything aches. My tears were relentless in their flow and there were moments so relatable that I thought the author had gotten into the deepest parts of my mind somehow. I have never cried so hard in my life. It was constant. I can’t stop thinking about this novel and it has jumped to my number one spot for favorite books. Although A Little Life is difficult to read and full of strong emotion that forces you to confront all that is ugly in this world, it is exquisite. This character-driven novel keeps you invested until the very last word. If you get a chance to read this one, I highly recommend it for those who are ready. Hanya Yanagihara has written a novel so raw and poignant. One that tries hard to discover the good things in life. This novel will stick with me for the rest of my own little life and makes me want to be a better person. Isn’t that all we can hope for?

“…things get broken, and sometimes they get repaired, and in most cases, you realize that no matter what gets damaged, life rearranges itself to compensate for your loss, sometimes wonderfully.”

Rating System

5 leaves: The highest rating that can be given. The novel was spectacular for reasons to be explained. A book I highly recommend and can see myself rereading.

4 leaves: The novel was good. It was extremely well written. Many of the story’s aspects were impressive. This rating means that although the story wasn’t perfect, I will still look for more written by this author.

3 leaves: Liked the story for the most part, but it was nothing special. This rating is given to novels that could have added more in terms of characters, world building, or plot. The book is promising. More detail regarding rating will be given in review.

2 leaves: A rating given to novels that aren’t super interesting or special to me. A few aspects are worth mentioning.

1 leaf: The lowest rating that can be given. I didn’t enjoy the book. Just not my cup of tea.

Book Review: Landline by Rainbow Rowell

Published: July 8th 2014 by St. Martin’s Press.

Format: Hardcover, 310 pages.

Source: Barnes and Noble.

Goodreads Summary: Georgie McCool knows her marriage is in trouble. That it’s been in trouble for a long time. She still loves her husband, Neal, and Neal still loves her, deeply — but that almost seems besides the point now.
Maybe that was always besides the point.
Two days before they’re supposed to visit Neal’s family in Omaha for Christmas, Georgie tells Neal that she can’t go. She’s a TV writer, and something’s come up on her show; she has to stay in Los Angeles. She knows that Neal will be upset with her — Neal is always a little upset with Georgie — but she doesn’t expect to him to pack up the kids and go home without her.
When her husband and the kids leave for the airport, Georgie wonders if she’s finally done it. If she’s ruined everything.
That night, Georgie discovers a way to communicate with Neal in the past. It’s not time travel, not exactly, but she feels like she’s been given an opportunity to fix her marriage before it starts . . .
Is that what she’s supposed to do?
Or would Georgie and Neal be better off if their marriage never happened?

Thoughts: I’ve come to the conclusion that it’s impossible for me to read a Rainbow Rowell book in more than one sitting. Due to unpopular (or popular) summer sleep habits, I found myself staying up till dawn to finish Landline. Earlier at the beginning of the year I placed this book on my most anticipated books list of 2014.  I don’t mean to wrap this review up with one sentience, but Rowell has delivered yet another story that I surely won’t forget.

I’ll be honest, my heart ached for both Neal and Georgie as their marriage took a turn for the worse. Especially because we only view the story from Georgie’s point of view. It’s never fun reading about an impending divorce. That said, this story won’t be for everyone. It doesn’t help that I developed an attachment very early on for the two main characters and their love story.

My favorite thing about Rainbow Rowell is that she’s able to create such complex and realistic characters. She also highlights their flaws and that adds another layer to the story. Somehow Neal’s distant personality balanced with Georgie’s outgoing one and I thoroughly enjoyed their college flashbacks. Watching their relationship blossom made me absolutely sure that they were meant to be together. I’m a bit of a hopeless romantic. But the truth is that relationships are hard work to maintain and change over time. This is exactly what we get to see.

The old school landline telephone almost seemed to add a mystical element to the story. At first, I had a difficult time understanding exactly what was going on, but found it easier to put the pieces together as I kept reading. I promise it all makes sense by the final chapter. This book is technically labeled adult contemporary, but Rowell seems to push the envelope and make it her own.

Laneline by Rainbow Rowell shows a raw account of relationships and just how delicate they can be. Even though I’m not married and I don’t have children of my own, I definitely found myself captivated by this novel and took something from it. Rowell is a talented writer.

Let me know what you think.