Disability Representation in Young Adult Literature

The Lead On Update has already mentioned Disability in KidLit as part of its regular series of posting the latest information in Blogs and Social Media.  However, the concept behind the online campaign and the decision of its founders to continue the blog posts beyond ADA month (July), and have weekly “disability in literature” posts, beginning in September is fantastic and a fantastic opportunity for the disability community to connect with authors to ensure that the next generation of youth with disabilities will see themselves represented in media.

The site is currently on hiatus (no new posts) until September, though the older posts will continue to be available.  It would be great to see our amazing readers offer their expertise and experience and mad writing/blogging skills to this project.  Below Day Al-Mohamed’s blog post that kicked off the month-long campaign, published June 30th (and also cross-posted on her own blog).

The Why – Why is having disability included in children’s fiction so important?

A woman in a wheelchair with a giant luggage label that says

A woman in a wheelchair with a giant luggage label that says “Invalid” on it around her neck. A man stands across from her with more labels: Burden, Tragic etc. and he says, “Just one more to go!”

So, recently Corinne Duyvis and Kody Keplinger  put together an idea: Disability in Kidlit. I was fascinated by the idea but wanted to know more.  I began by perusing their website which states that the goal is “to serve as a resource for readers and writers hoping to learn more about the realities of disability, which are often quite different from what you read in books or see on TV.”

You’re visiting this site because you obviously are looking for information relating to MG and YA writing and characters with disabilities but I wanted to take a moment to highlight why this is so critical and to encourage you to take advantage of the amazing writers and authors who are sharing their expertise and information.  It is the first step to not only writing a fantastic (and accurate) character for your fiction but also perhaps having a greater impact than even you imagined.  Let me tell you a little about a key part of your audience.

According to the United Nations World Health Organization (WHO), almost *ten percent of the world’s population lives with a disability.  That figure is the same for the *United States, ten percent.  People with disabilities are the world’s largest minority.  These disabilities run the gamut including physical, sensory, mental, neurological/cognitive, and developmental, and impact young people regardless of race, ethnicity, age, gender, or sexual orientation.

And these are youth who are part of a new generation.  They are youth who have not grown up in institutions and special schools.  They have been integrated into mainstream schools – some more successfully than others.  So the question for them is: “What’s next?” For many, the answer is: “I don’t know.”  Perhaps more than ever before these youth need role models. They need to see themselves out there in the world.  While having real live people to emulate is great, the next best thing is fictional characters.

Books have a key role in shaping our culture and environment.  Regardless of one’s opinion as to the quality of the writing or content, what is indisputable is the impact on the culture, style, opinions, and actions of young people.  Fiction also has the ability to teach young readers what to expect from the world and what the world expects from them.  It shows them what can be versus what is.  Jane Fleming at the Erikson Institute in Chicago states, “Kids do have a different kind of connection when they see a character that looks like them or they experience a plot or a theme that relates to something they’ve experienced in their lives.”  This is reiterated in an article in the journal of “Education and Training in Autism and Developmental Disabilities” that highlights that “kids look to books to find characters they can identify with.”

There is a growing body of literature that highlights youth of different genders and races. However, what is missing is seeing young characters with disabilities that are independent, capable, and fully realized. Debra Robertson in Portraying Persons with Disabilities: An Annotated Bibliography of Fiction for Children and Teenagers (1992) pointed out that not every disability has to be a “metaphor for a protagonist’s development,” and also pointed out the tendency of writers to romanticize or stigmatize disabilities as a persistent problem in MG and YA writing.

I bring this up because of the history of characters with disabilities in fiction as, among other things, an example of courage and fortitude: inspiration porn (and yes, I’ve definitely blogged on this hot button issue before).  These “brave-and-courageous-battle-against-tragedy” narratives are hardly representative to the lives of actual youth with disabilities. In fact, it can even be dangerous.

That last statement may seem like hyperbole, but kids with disabilities are just that…kids.  They play, have relationships, fight, sulk, etc.  They may require accommodations, a bit of help, or just some creativity to do the same things as their peers but to be honest, most kids’ lives with disabilities are not fraught with “disability angst” every moment of every day. They may love Science and hate parsing sentences in English; they may have a BFF they go to the mall with, or a secret crush on the guy in Homeroom.

When characters with disabilities are portrayed as inspirational or overcoming obstacles just for living their daily lives, it sends a message that a life with a disability is a burden, on the individual and on the family, and just surviving is an accomplishment. What message does that send to young people? Don’t we want to hold them to the same standards as their peers?  Studies have shown that one of the greatest indicators of success for young people is expectations.  If fiction is setting up the expectation that just getting out of bed is an accomplishment then we are doing these youth a disservice.

Adults are just as impressionable.  I recently had a conversation with an individual who had read a book about a young blind girl who dressed in mismatched clothing.  She asked me, a blind woman, “It is wonderful how you look so nice.  Who dresses you in the morning?”  She thought I was an inspiration for being out in the real world.  She was less than pleased with my flippant response, “Whoever stayed the night before.” :)   But she read and believed that blind people were slobs; that they required assistance to even dress. Now imagine if she ever had a blind daughter, or taught blind children… Disability can be a pain in the rear, like discovering a local restaurant isn’t wheelchair accessible and having to go somewhere else, but hardly a tragedy.

Only a few years ago an analysis of winners of the Newberry Medal and Honor – perhaps the most well-known award for children’s literature – showed that over 35 years, out of 131 books, fewer than 31 books included a main or supporting character with a disability and of those that did, many provided inaccurate views of life with a disability.  But there is something we can do.

Pulitzer Prize winner Junot Díaz has stated on numerous occasions that he wrote “The Brief Wondrous Life of Oscar Wao” to give Hispanic youth in the U.S. a character they could relate to. He has talked about how he never had that “reflection” growing up — no representations of people like him.

You guys know about vampires? … You know, vampires have no reflections in a mirror? There’s this idea that monsters don’t have reflections in a mirror. And what I’ve always thought isn’t that monsters don’t have reflections in a mirror. It’s that if you want to make a human being into a monster, deny them, at the cultural level, any reflection of themselves. And growing up, I felt like a monster in some ways. I didn’t see myself reflected at all. I was like, “Yo, is something wrong with me? That the whole society seems to think that people like me don’t exist? And part of what inspired me, was this deep desire that before I died, I would make a couple of mirrors. That I would make some mirrors so that kids like me might see themselves reflected back and might not feel so monstrous for it.

― Junot Díaz

His example is just as relevant when applied to disability as a way to emphasize the impact that writers can have (and I think this particularly pertinent to MG/YA authors). You are building those mirrors.

This July 26th is the 23rd anniversary of the Americans with Disabilities Act (ADA) and the month is often used as a celebration of that freedom.  The ADA was and continues to be groundbreaking legislation that demands nothing less than equal access for people with disabilities. It presumes that people with disabilities can and should be a part of daily American life.

But law is a cold, inflexible thing and it doesn’t have the ability to inspire people.  It doesn’t drive them to be more open minded, more tolerant, and to expect more from young people with disabilities.  It doesn’t teach them about all the adventures they can have, the futures they can dream, or all the possibilities available to them to make those things happen.  YOU…you, writers, have that power.  Let’s build diverse worlds and diverse characters. Let’s build those mirrors Junot was talking about.  Books change lives.  We believe that.  That is why we’re authors, isn’t it?

*Update/Correction: Regarding statistics for the disability population, the numbers I listed are incorrect.  According to the WHO, disability is listed as 15% in the world, and in the United States disability is at almost 20%.  Even higher than my estimates.  That only serves to provide greater emphasis on the need for good disability representation in fiction. 

Image is by Crippen and can be found at Disability Arts Online.

So, as mentioned previously, get over to their site and sign up for a submission slot, share the posts, talk about more diversity in fiction, encourage more authors to write characters with disabilities.  Together.  Lets help ensure that young people with disabilities will be able to see themselves in the books they read.  We can do this.  Together.

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