Disability is Entering its Main Character Era: 30+ Books That Feature Disabled Main Characters
Via UnsplashWritten By
Grace Mintun
July 8, 2024
This month is disability pride month. I have a disability, so seeing a month all about promoting disabled voices and fighting for positive change in social, political, and economic spheres to support disabled people is something near and dear to my heart. Never heard about disability pride month? Let's change that!
Disability Pride Month started in 1990, when the Americans with Disabilities Act (ADA) was signed into law. The act prohibits discrimination against disabled people in many areas, including, but not limited to, employment, housing, transportation, and access to government services and programs. Before 1990, discrimination was rampant and legal. Disability awareness month was created in recognition of the disabled struggle to obtain quality of life and independent standing in society. So having access to things and legalizing rights to them is important! Celebrating them and everything they've fought for is important because disabled people want normal lives too. The theme of this year's disability pride month is "We Want a Life Like Yours," because it reflects the disabled community's dreams for life experiences, milestones, and celebrations they are often denied because of a lack of access and discrimination based on an inaccurate perception of ability.
“16% of the world’s population experience significant disabilities.”
So, let's first define disability. Defined by the Centers for Disease Control and Prevention (CDC), “disability is 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).” The Americans with Disabilities Act (ADA) defines a person with a disability as “a person who has a physical or mental impairment that substantially limits one or more major life activity.” There are 14 major types ranging from visible to invisible (like blindness, deafness, limb differences, autism, and learning disabilities to name a few), but all these places categorize it as something that impacts your day-to-day life in a negative way. However, with over “16% of the world's population experiencing significant disabilities” and falling into one category or another, disabled people make up the largest and most diverse minority globally. This number is increasing due to a growing recognition of population increases, the effects of aging, awareness, chronic illnesses, and improvements of diagnostic criteria to get everyone who has qualifying problems help get the care they need.
With the growth in accessibility to care and materials needed for disabled folks, as well as the awareness being brought into the forefront, we are seeing more and more media representations of all kinds of minorities. Stories are being told that had never been given the chance to shine before. These are needed stories, full of diverse characters and even more unique storylines. Positive media representation of any kind can be a wonderful way to bring awareness, emotional connections, and education of marginalized groups to society as a whole.
Among those stories being told were stories of disabled characters. But, unfortunately, usually, only a side character or multiple side characters were disabled, and never the main character. It's important for people to see themselves in media, and representation is paramount. Reading stories from the first-person perspective of those who have a disability rather than just those who interact with a person with a disability is significant. Disabilities can be invisible, so being able to see yourself reflected in the main character is crucial because how your disability affects you is more important than how others think that your disability affects you.
The disparity between a lived experience and how others perceive a lived experience is quite vast. It creates a disconnect because one is more focused on who has the disability and how it affects their life, while the other is focused on how disabling those around them believe that person's disability to be. Able-bodied people already try to guess what it's like to be in a disabled body. They talk about disabilities like they know everything about them because they see it throughout their lives. However, it's NOT about how you'll perceive someone else's disability from an able-bodied person's perception because able-bodied people already do that SO wrong SO frequently. It's time for disabled people and disabled characters to take the stage as the main focus in these stories.
As someone with chronic illnesses and disabilities, we are more than our disabilities. We are more than how illnesses and disorders affect our lives. We are living people, not just a trope or "inspiration porn" defined as, "objectifying disabled people for the benefit of nondisabled people" by activist Stella Young. Seeing how people in fiction who have these things can succeed gives us, those with disabilities, a sense of hope. A hope that we can still do amazing things, that we can achieve our dreams even with these limitations. We are more than limitations. But we can’t ignore those limitations, because ignoring them doesn't make them any less debilitating or life-altering. If we embrace them it strips away the otherness it has branded our lives with and, instead, gives us the power to embolden ourselves.
Around us, we always see how our disabilities affect others. It takes longer to go places, we have to have people help us do basic tasks, we can't do certain things or act certain ways, and it is painfully apparent to us that something is wrong. Something isn't right. So hearing our narrative from the perspective of someone who is on the outside looking in feels hollow. It's just going to be someone's perception of just how hard they perceive life is for the disabled person and how the disabled person's life affects those around them. We have a well-tuned "burden-dar" that can never be turned off because people's perceptions of us haven't changed, they just changed their looks from smiles of disgust to smiles of pity.
“A community of people who understand firsthand accounts before they listen to secondhand stories is a tighter-knit safety net to catch everyone when they need it because the holes in their knowledge and empathy don’t create cracks for us to fall through.”
We see media centered around how hard it is to be a caretaker and how hard it is to see all this sickness, but when do we really listen to those who are dealing with it firsthand? Do you know what hearing how people perceive you does to someone? When all you hear is all the ways "you can't do things" or "you aren't normal" and that "you're a burden" you start to think that's all you are. Taking the story back is crucial to remembering that you are more than what others think of you and that there are others out there who are like you and can relate. A community of people who understand firsthand accounts before they listen to secondhand stories is a tighter-knit safety net to catch everyone when they need it because the holes in their knowledge and empathy don't create cracks for us to fall through. We can be the main character of the story. We do not need to be the sarcastic side character anymore who has no agency.
Adult:
Piranesi by Susanna Clarke - Set in a parallel universe made up of a labyrinthine halls and rooms that gradually makes you lose your memories and identity the longer you’re there, we’re following a narrator who is trying to reconstruct his memories to figure out how he got to be in this world (chronic fatigue, dissociative fugue).
The Charm Offensive by Alison Cochrun - Charlie needs to repair his public image by appearing on a fictional reality dating show Ever After and ends up falling for someone unexpected on the show (OCD, panic disorder, depression).
All the Light We Cannot See by Anthony Doerr - Becoming adept with building and fixing radios, Werner catches the eye of the brutal academy for Hitler Youth to help their cause (blindness).
Black Sun by Rebecca Roanhorse - Set in a dark fantasy novel inspired by Pre-Columbian Americas, this book follows four people in the fictional city of Tova and explores themes of politics, class divide, and genocide (blindness).
The Rosie Project by Don Tillman - A genetics professor with undiagnosed autism spectrum disorder tries to find a wife in a scientific way, and winds up having many romantic and comedic errors along his journey (autism).
Seven Days in June by Tia Williams - A romance novel about two writers who meet again after 15 years apart after a week in June changed their lives as teens (migraine).
I had a few but strict criteria for the list below. First, it had to be published in the last 10-15 years. It also had to have a 4 star or higher star rating on Goodreads with 30k ratings or more. These stories are all fiction and the disability is that of the main character. That way it is up to date with the times, it has well-liked representation, and accurate representation. Now I'm going to step down off of my well worn soap box and let these characters speak for themselves about the different ways there are to be disabled and human.
Young Adult:
True Biz by Sar Novic - Charlie, a deaf person who’s never met another deaf person before is thrust into a new world when he transfers to a residential school for the deaf (deaf).
Challenger Deep by Neal Shusterman - Caden struggles with hallucinations that he perceives to be reality as he tries to reach the bottom of Challenger Deep, the deepest part of the Marianas Trench, which coincidentally is the deepest place on Earth (schizophrenia).
Every Last Word by Tamara Ireland Stone - A girl who struggles with pure “O” obsessive compulsive disorder, which is just obsessions, spirals into a life that revolves around words and poetry and what’s real (OCD).
Six of Crows by Leigh Bardugo - A queer found-family tries to pull off a deadly heist that could make them rich beyond their wildest dreams in the fantastical land of Ketterdam (limp, chronic pain, trauma-related mental illness, PTSD).
We Are the Ants by Shaun David Hutchinson - After being abducted by aliens for 144 days, Henry is given the choice of whether he wants to save Earth from alien destruction or if he even thinks the world is worth saving at all (depression).
Five Feet Apart by Rachael Lippincott, Mikki Daughtry, and Tobias Iaconis - Two teens with chronic illness fall in love, even though their disease means they can never touch without risking their lives (cystic fibrosis).
Cinder by Marissa Meyer - A retelling of Cinderella in a dystopian sci-fi setting about a girl stuck on a planet where a plague rages and a race of ruthless lunar people watch the people on Earth’s every move (limp, missing limb).
Darius the Great is Not Okay by Adib Khorram - Darius is an Iranian-American teenager who struggles with depression and follows his life as he comes to accept his identity (depression, chronic illness).
Sadie by Courtney Summers - Sadie is on a revenge mission to kill the man who killed her sister, and goes missing in her quest (stutter).
Eliza and Her Monsters by Francesca Zappia - A talented webcomic artist who prefers her online world to the real one and struggles with her fears when her comic suddenly gains massive popularity (anxiety, depression).
She Gets the Girl by Rachel Lippincott and Alyson Derrick - Two girls meet the night before college classes start and agree to mutually help each other win over their respective crushes (anxiety).
This Savage Song by Victoria Schwab - A young man and woman must choose whether to become heroes or villains in their city at war that’s overrun by monsters (bilateral hearing loss).
As Long as Lemon Trees Grow by Zoulfa Katouh - Follows a pharmacy student during the Syrian Revolution, and includes love, loss, hope, violence, and the possibility of a brighter future (PTSD).
The Firekeeper’s Daughter by Angeline Boulley - Daunis is coming to terms with her biracial identity when she goes undercover to help with a criminal investigation (chronic pain).
Heartstopper by Alice Oseman - A graphic novel about two British teens who fall in love at an all-boys school (anxiety, depression, OCD).
You Should See Me in a Crown by Leah Johnson - In order to get out of her small town in Indiana to become a doctor, a girl sets her sights on a scholarship that has just one catch: becoming the prom queen (anxiety, sickle cell).
New Adult:
Tomorrow, Tomorrow, and Tomorrow by Gabrielle Zevin - Two college friends united by a love of video games live decades of fame, joy, tragedy, and success as they are entwined with each other’s lives (walks with a cane).
Fourth Wing by Rebecca Yarros - Violet is forced into becoming a dragon rider or die trying in this fast-paced, deadly, and fantastical romantasy (ehlers danlos syndrome).
Iron Widow by Xiran Jay Zhao - Following Wu Zetian and her quest for revenge, we see a young woman fight back against the patriarchy by piloting giant mechs (club foot, uses cane and wheelchair).
Middle Grade:
The War that Saved My Life by Kimberly Brubaker Bradley - A young girl escapes an abusive mother who doesn’t allow her to go outside because of her disability and finds refuge and freedom in the countryside during World War II (clubfoot).
El Deafo by Cece Bell and David Lasky - A graphic novel about becoming deaf and how a young girl copes with all that comes with it (deaf).
Pet by Akwaeke Emezi - A transgender teenager questions her futuristic society’s claim that they have eradicated all “monstrous” people and what “monstrous” truly means (dissociative identity disorder).
Insignificant Events in the Life of a Cactus by Dusti Bowling - A girl born without arms has never lacked confidence, but moving to Arizona and being the new girl brings new challenges she has yet to solve (missing limbs).
Akata Witch by Nnedi Okorafor - Sunny discovers her magical abilities in this fantasy novel set in Nigeria (albino).
Out of My Mind by Sharon Draper - Fighting to communicate her wishes is a constant struggle for Melody, as she learns to persevere and teach others inclusion and understanding (cerebral palsy).
Wonder by R.J. Palacio - A 10-year-old boy with facial differences has always been homeschooled, but his whole world changes when he starts fifth grade at a public school (Treacher Collins syndrome).
Written by: Grace Mintun
About the Author:
Grace Mintun (she/her) is a writer and Twitch streamer dedicated to promoting kindness and breaking down stigma around mental health and disabilities!
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Sources :
1 - https://necessarybehavior.com/lets-talk-about-ableism-for-disability-pride-month
2 - https://www.cdc.gov/ncbddd/disabilityandhealth/disability.html
3 - https://adata.org/factsheet/ada-definitions
4 - https://crsreports.congress.gov/product/pdf/R/R46566
5 - https://www.who.int/teams/noncommunicable-diseases/sensory-functions-disability-and-rehabilitation/global-report-on-health-equity-for-persons-with-disabilities#:~:text=An%20estimated%201.3%20billion%20people,health%20as%20those%20without%20disabilities.
6 -https://www.npr.org/2022/08/08/1115682836/how-to-talk-about-disability-sensitively-and-avoid-ableist-tropes#:~:text=Inspirational%20narratives%20of%20disability%20are,the%20benefit%20of%20nondisabled%20people.%22
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