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A Reflection of Me: More Than A Disability

March is Developmental Disabilities Awareness month, which focuses on celebrating the lives of individuals with developmental disabilities as well as understanding their specific needs and the progress made toward improving quality of life for them.

It is a reminder that a person with a disability is a person first, and like everyone else they are complex, individual and can contribute wonderful things to our society.

Taking the time to read stories from people with disabilities is a great way to gain understanding about their life. And with understanding comes the breaking of stereotypes that have long surrounded the disabled community, formed by non-disabled people. I am a firm believer that literature can help those who are not disabled understand and connect with those who are.

For children with a disability, books can be a great space to see a main character like themselves. For other children it’s an opportunity to see a character that is similar to a loved one or a friend, and it can be an opportunity to learn about the world.

Let’s Get To The Facts

The CDC defines developmental disabilities as “a group of conditions due to an impairment in physical learning, language, or behavior areas.” They begin during a children’s development and often last throughout a person’s life. Some common developmental disabilities are: ADHD, autism spectrum disorder, cerebral palsy, hearing loss, vision impairment, and learning disabilities.

Not all disabilities are developmental disabilities, of course. The CDC describes disability as “any condition of the body or mind (impairment) that makes it more difficult for the person with the condition to do certain activities (activity limitation) and interact with the world around them (participation restrictions).”

A big difference is when the disability occurs; If you are in a car accident at 27 and become paralyzed, you have a physical disability. However, it’s not developmental because it did not occur during a developmental period.

Each year the US Census Bureau conducts a survey to determine the overall percentage of people with disabilities. It looks specifically at individuals with hearing, vision, cognitive, ambulatory, self-care, and independent living disabilities.

In 2016 the overall percentage of the US population with a disability was 12.8%. And though that percentage seems small, when you think about the overall US population that means 25.5 million people in the US have a disability.

When we look at children specifically, recent estimates show that 15% of children ages 3 to 17 have one or more developmental disabilities. That means about 1 in 6 children are living with a developmental disability.

As I mentioned in my first blog post (if you didn’t read it, it’s cool, I get it, BUT it’d be super cool if you did read it) it’s really difficult to find a study that shows how many books have been published featuring characters with a disability.

From the Lee & Low study though, I can tell you that 92 percent of the overall publishing industry is not disabled. The highest percentage of individuals with a disability in the industry comes at the book reviewer level, where 12% of reviewers have a disability. As with other underrepresented communities we have discussed, we know this can be problematic in how people with disabilities are represented in literature.

Because of this, it’s important to note that “disabilities” is a broad term. Not only are there different disabilities, but people with the same disabilities are often very different:

  1. Because they will have different interests and personalities, and

  2. Because disabilities are spectrum-based and vary from person-to-person.

For example, not everyone with cerebral palsy uses a wheelchair, so we should not treat people with the same disability the same because they live different lives.

Disability Tropes

In doing my research for this blog post, I came across an AMAZING website called Disability in Kid Lit which discusses the portrayal of disabilities in literature for ages 8 to 18 from the disabled perspective.

I’m focusing more on children’s literature because that’s what DIBS’ focus is on, BUT the things they have to say can be easily translated to any story for any age range. Each article or discussion post I read allowed me to understand the impact stereotyping can have and common portrayals in literature that hurt more than they help, specifically around the idea of disability tropes.

A literary trope is a figure of speech, theme, image, character, or plot element that is used many times in a story or genre. Here, we use it to describe ways disabled characters are portrayed in literature and the impact this has on readers who have a disability and do not.

  • The Disabled Saint: Think Tiny Tim – the idea that a person with a disability is just a sweet, pure, innocent person. Of course everyone wants to be seen as a good person, but this portrayal leads to static, one-note characters. It undermines the struggles people with a disability have and the idea that they feel the same emotions as people without disabilities.
  • The Disabled Villain: Think Darth Vader. In his case, his evilness is defined by his disability. After he loses his arm and legs, his brooding quality becomes who he is. Another aspect of the disabled villain is that they are deserving of revulsion and fear because of their disability, that they are disfigured and disgusting. Safe to say, it’s fairly self explanatory as to why this trope isn’t seen as a positive representation of the disabled community in literature.
  • The Magically-Healed Disabled Character: Think Colin in The Secret Garden, a bedridden boy who at the end of the book is able to walk. This character struggles with a disability only to be “cured” magically in the end by either technology or learning a life lesson. The problem is that 1.) A lot of disabilities cannot be cured, 2.) Even if they could be cured, people may not want that because they identify with their disability, and 3.) It implies that a person with a disability is less than whole or incomplete because of their disability and they only reach their full potential by being cured.
  • The Magical Disabled Person: Think of a child with autism who solved a mystery the police couldn’t because of the way his mind works, or even of the Marvel superhero Daredevil. This character holds the key to saving the day or solving a mystery that is vital to the story line. The issue is that this character’s disability exists only to help others and further the plot line. They are someone to be fawned over. It can also be an instance where a disability is caused by magic or a character’s magic causes a disability.
  • The Disabled Relative: This character exists mostly to enhance the story of a different, more central character. At times, it feels like they don’t have their own story line or even personality. They are just a list of cans and cannots instead of having feelings and a real relationship with their family members.

It’s important though that how these tropes are received is completely subjective. Some parents are looking for stories that they can use to teach their children about disabilities, especially when someone in their family has a disability. Others want readers to know that their child is so, so much more than their disability.

Books Books Books

As I said above, people have really strong feelings about what is a quality children’s book that includes or is about a character with a disability. As a person who does not have a disability and is recommending books featuring a character with one, I did my best to choose books that I felt had been widely reviewed and accepted by members of the disabled community:

 

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  1. El Deafo written and illustrated by Cece Bell as a graphic novel memoir. Cece recalls her life and what it was like going to school while also wearing a big, bulky hearing aid, what it’s like to experience hearing loss at such a young age and the impact this can have when trying to make friends.
    • New York Time Bestseller and 2015 Newbery Honor Book
  2. My Brother Charlie by Holly Robinson Peete, Ryan Elizabeth Peete and illustrated by Shane Evans. This story is told from Callie’s perspective, Charlie’s twin sister, and what it is like growing up with a brother who is autistic. She explains that Charlie is more than what he cannot do and all that he has taught their family about what it means to show someone you love them. The book is based on the authors’ lives where Ryan Elizabeth is the twin sister of RJ, her brother with autism.
    • The royalties of this book are being donated to HollyRod4Kids Foundation, which helps children with autism gain access to affordable treatments and therapies.
  3. Just Because by Rebecca Elliott. Toby describes his big sister Clemmie and why she is his best friend throughout the book. He doesn’t understand why there are certain things that Clemmie can’t or chooses not to do, it’s “just because.” Parents love this book because it doesn’t specify what disability Clemmie might have, just that she is non-verbal and non-ambulatory but shows that just because Toby knows she is different he doesn’t treat her any different.
  4. The Sound of All Things written by Myron Uhlberg and illustrated by Ted Papoulas. The story takes place in 1930s Brooklyn and Coney Island as a family takes a trip to enjoy all that the park has to offer. The depth of the story surround the relationship a boy has with his deaf parents (based on Myron’s life) who ask him to explain all that he hears at the park. He uses sign language but feels he isn’t doing a good enough job to explain all he hears to his parents so he takes it upon himself to visit a library and enrich his vocabulary.
  5. The Snow Rabbit by Camille Garoche. In this wordless picture book, two sisters long to be outside in the snow but one is in a wheelchair, making it more difficult for her. The sisters find themselves outside and on an adventure in an enchanted forest but the sister in the wheelchair gets one of her wheels stuck. This story allows there to be a main character with a disability at the forefront, but finds a way to make sure that it isn’t the only character trait of that sister.
  6. A Boy and A Jaguar written by Alan Rabinowitz and illustrated by Catia Chien. Based on Alan’s life and love for big cats, the story talks about how even at a young age he felt large cats do not belong cages. He also focuses on what it was like to grow up with a stutter that left him feeling like he wouldn’t be able to be a voice for animal conservation.
    • The book does talk about some deep topics like being sent to a class of “disturbed children” and the dangers of animal poaching, but both of these are issues Alan had to deal with in his life. He and many parents suggest using this book as a starting point for conversations with children about these issue.
    • 2015 Schneider Family Book Award Winner: This award honors authors and illustrators for books that embody an artistic expression of the experience children and adolescents with disabilities have.
  7. King for a Day written by Rukhsana Khan and illustrated by Christiane Kromer. Basant Kite Festival is an extraordinary event in the Punjab region in India and Pakistan and celebrates the arrival of spring. Malik is looking forward to the kite battles and hopes to become the best kite fighter. This beautiful book focuses on the festival and gives additional details in the back of the book. Malik, the main character, is in a wheelchair but the story makes no mention of his disability or why he is in a wheelchair, giving us a great example of a story where his disability is not the focus.
  8. Six Dots: A Story of Young Louis Braille written by Jen Bryant and illustrated by Boris Kulikov. Serving as a biography of Louis Braille, this story explains how even after he lost his eyesight, Louis wanted to be able to read like everyone else but there were no books, or even an alphabet for him. Although the story does focus on his disability, it also shows how it inspired him as an inventor and creator to help others like him.
    • 2017 Schneider Family Award Winner

 

For more information on reading interventions that parents and educators can use to increase comprehension and improve reading skills for certain students with developmental and intellectual disabilities, one of our volunteers (thanks Bethany!) found some wonderful resources.

One resource is a study, summed up by the blog Love That Max, that shows how powerful traditional reading interventions for children with learning disabilities can impact students who have developmental or intellectual disabilities.

“This study raises the expectations for everybody…. It takes away our excuses as educators…We really need to make every effort to teach every single child to read.”

Watch the video below to learn more.

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Another resource comes from Reading Rockets, which breaks down different techniques that are proven to be effective for some students. 


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Hi! My name is Emilee Armbruster and I currently serve as a Program Improvement Engineer at DIBS. I am originally from Ohio and studied Early Childhood Education at Xavier University (Go X!). I feel passionately about educational equity as well as Cleveland sports, Xavier basketball, cute dogs, Fiona the hippo and cooking!

 

 
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Hi! My name is Bethany Proksel. I landed in business after an upbringing in creative writing, history, and tutoring.  I’m a lucky wife, mother of two, aspiring runner and amateur cyclist. I love capturing the sweet and simple observations of my 5 and 12-year-old while we explore the big wide world.

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