"I knew growing up, that my life as a disabled child was just a valuable as that of any other girl. But I did not know- and sometimes still don't- how to fit physically into that valuable space. I was not the girl who was graceful in dance class, even though I wanted to be; I was not the girl who walked confidently through the halls at school I limped, I wore awkward boxy shoes. The princesses in the talks I read in school and at home were not hampered by orthopedic interest or physical therapy. They didn't have to go on yearly checkups to a hospital in Toronto so a doctor could examine their misshapen feet and measure their limbs"I could relate to Amanda Leduc's Disfigured: on Fairy Tales, Disability, and Making Space in a way that is very rare for me. Having had several skin grafts on my left foot, to remove a birthmark, all by the time I entered 4th grade, I never had anyone who truly understood what I went through, what I felt. I barely understood any of it.
"Books are sometimes windows, offering views of worlds that may be real or imagined, familiar or strange. These windows are also sliding glass doors, and readers have only to walk through in imagination to become part of whatever world has been created or recreated by the author. When lighting conditions are just right, however, a window can also be a mirror. Literature transforms human experience and reflects it back to us, and in that reflection, we can see our own lives and experiences as part of the larger human experience. Reading, then, becomes a means of self-affirmation, and readers often seek their mirrors in books."
—Rudine Sims Bishop, "Mirrors, Windows, and Sliding Glass Doors" from Perspectives: Choosing and Using Books for the Classroom. vol. 6, no. 3. Summer 1990 https://litreactor.com/columns/representation-matters
The goal for disease literacy month is to bring people a better understanding of their own disease and chronic illness; especially children. Not being able to grasp the who, what, when, where, why, and how only adds to the confusion and frustration of being sick.
Now for clarification:
An illness is a sickness. Some illnesses are acute, which means they come on quickly and are over quickly (like a cold or the flu). Other illnesses are chronic, which means they last a long time and perhaps a lifetime (like asthma or diabetes).
A disability is a physical or mental problem that makes it harder to do normal daily activities. You can be born with a disability or get it from an illness or an injury.
For this blog, I am including disability with disease literacy because the representation for both sides of this is lacking.
In April, Margaret Kingsbury tackled this topic in The Current State Of Disability Representation In Children's Books on Bookriot. Tackling how, with improvements when it comes to diversity and disability representation, there is still a huge hole: "According to the Cooperative Children’s Book Center’s 2019 study, only 3.4% of children’s books have disabled main characters. Compare this statistic with the CDC’s finding that 26% of Americans have disabilities, and it’s easy to see there’s a problem."
Some books are problematic in their reinforcement of stereotypes or the portrayal of someone "overcoming" their disability in ways that just aren't possible. Disability in Kidlit tackles problematic portrayals in Discussion: If We Could Tell an Author One Thing … where there is a call for accuracy because spectrums exist, and disabilities shouldn't be painted with the same brush. Take Multiple Sclerosis, it's considered a "snowflake" disease because it affects people differently.
Kids need to see themselves in the books that they read, the television and movies they watch, and in the toys, they play with. An accurate portrayal of just a person being human. Not as someone's inspiration, not as a villain, and not as a cliche (all of which are problematic themes that the disabled community faces). "In addition to providing readers with accurate and realistic information regarding a disability, literature should also promote empathy and acceptance" Literature opens doors for all children, Donna L. Miller
I begged for a stuffed bunny with a grease stain on his forehead. My mom asked "why? why do you want a toy with a stain." My answer: "he's got a birthmark, like me!"
In the introduction of her book Sitting Pretty: The View from my Ordinary Resilient Disabled Body Rebekah Taussig writes: "When you grow up in a world that doesn't see you or welcome you or include you or represent you, you believe the world isn't for you..."
"A factual, yet hopeful story about the 2020 global COVID-19 pandemic. This book assures children that many people, including kids themselves, are helping to fight this new disease."--Page [4] of cover.
After being diagnosed with rare eye cancer, twelve-year-old Ross discovers how music, art, and true friends can push him through treatment and survive middle school.
Harry loves macaroni and cheese, but when he gets sick, he can't eat it! He gets so sick that his parents take him to the hospital. The story then follows Harry (with his mom and dad) through the experience of going to the hospital. Harry doesn't like having to meet lots of new people, getting poked with needles, and staying the night in a strange place, all the while feeling sick to his tummy. But with his parents' comfort and the help of lots of doctors, nurses, and other people, Harry learns that the hospital doesn't have to be a big, scary place.
"Harry Goes to the Hospital is the resource parents are looking for. Dr. Bennett captures all the questions and fears children may have about impending or unexpected hospital visits and addresses them in an engaging and informative way! This book encourages children to explore their feelings and express their thoughts. I highly recommend it!"
—Terry Spearman, CCLS, Team Leader, Child Life Services, Children's National Medical Center
Harriet Flores struggles with boredom and an unrequited crush while learning to manage her chronic illness through a long, hot, 1990s summer in Chicago. She uses her imagination to cope, which sometimes gets her into trouble, as she makes up fantastical fibs and wonders if there are ghosts upstairs. One neighbor, Pearl, encourages Harriet to read and write, leading Harriet to have a breakthrough
Illustrations and easy-to-read, rhyming text convey advice about what to do when a friend becomes very sick.
This novel-in-verse--at once literary and emotionally gripping--follows the unfolding friendship between two very different teenage girls who share a hospital room and an illness.
Chess, the narrator, is sick, but with what exactly, she isn't sure. And to make matters worse, she must share a hospital room with Shannon, her polar opposite. Where Chess is polite, Shannon is rude. Where Chess tolerates pain silently, Shannon screams bloody murder. Where Chess seems to be getting slowly better, Shannon seems to be getting worse. How these teenagers become friends, helping each other come to terms with their illness, makes for a dramatic and deeply moving read
A diagnosis of chronic Lyme disease during her sophomore year at Stanford sends Priya back to her loving but overbearing family in New Jersey. Will she ever be able to go back to premed? Thankfully she has her online pen pal, Brigid, and the "oof ouch my bones" virtual support group that meets on Discord to crack jokes and vent about their own chronic illnesses. When Brigid suddenly goes offline, Priya drives to Pennsylvania to check on Brigid. She finds a horrifying creature shut in the basement, and begins to puzzle together an impossible but obvious truth: the creature might be a werewolf-- and the werewolf might be Brigid. -- adapted from jacket. Provided by Publisher.
"Written by Boston Marathon bombing survivors Jessica Kensky & Patrick Downes, Rescue & Jessica is based on their real-life experience with Jessica’s service dog Rescue." -https://scottmagoon.com/rescue-jessica
When he is paired with a girl who has lost her legs, Rescue worries that he isn't up to the task of being her service dog.
For Bixby Alexander Tam (nicknamed Bat), life tends to be full of surprises -- some of them good, some not so good. Today, though, is a good surprise day. Bat's mom, a veterinarian, has brought home a baby skunk, which she needs to take care of until she can hand him over to a wild-animal shelter. But the minute Bat meets the kit, he knows they belong together. And he's got one month to show his mom that a baby skunk might just make a pretty terrific pet.
The author recounts in graphic novel format her experiences with hearing loss at a young age, including using a bulky hearing aid, learning how to lip read, and determining her "superpower."
"Going to school and making new friends can be tough. But going to school and making new friends while wearing a bulky hearing aid strapped to your chest? That requires superpowers! In this funny, poignant graphic novel memoir, author/illustrator Cece Bell chronicles her hearing loss at a young age and her subsequent experiences with the Phonic Ear, a very powerful--and very awkward--hearing aid. The Phonic Ear gives Cece the ability to hear--sometimes things she shouldn't--but also isolates her from her classmates. She really just wants to fit in and find a true friend, someone who appreciates her as she is. After some trouble, she is finally able to harness the power of the Phonic Ear and become "El Deafo, Listener for All." And more importantly, declare a place for herself in the world and find the friend she's longed for"-- from publisher's web site.
An anthology of stories in various genres, each featuring disabled characters and written by disabled creators. The collection includes stories of interstellar war, a journey to Persia, a dating debacle. The teenaged characters reflect diverse colors, genders, and orientations-- without obscuring the realities of their disabilities. -- adapted from jacket
"Six dangerous outcasts. One impossible heist. Kaz's crew is the only thing that might stand between the world and destruction--if they don't kill each other first"-- Provided by the publisher.
"I was impressed by all the representations of disability in the book. Even the ones with little page time receive respect and realism, and every disability organically feeds into the characters’ goals, backstories, and characterization. It’s common for disabilities to feel like the primary point of the character, or on the opposite end to feel tacked-on and irrelevant. The disabled characters in Six of Crows are all complex in their own rights, and it’s impossible to imagine them without their disabilities – they would be entirely different people." -Review: Six of Crows by Leigh Bardugo BY NATASHA RAZI
“This may feel true for every era, but I believe I am living in a time where disabled people are more visible than ever before. And yet while representation is exciting and important, it is not enough. I want and expect more. We all should expect more. We all deserve more.”
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