 | Caitlin Metheny is an assistant professor of English Language Arts education at University of South Carolina Upstate; she has taught courses in secondary ELA methods, K-16 writing methods, children’s literature, and young adult literature. As a disabled teacher educator, she is passionate about children’s and YA literature with nuanced disability representation. Her research primarily focuses on critical engagement with these texts for readers and educators. She is also currently serving a 5-year term as co-editor of The ALAN Review (TAR). |
Celebrating Positive and Nuanced YA Disability Representation for Disability Pride Month by Dr. Caitlin Metheny
“I’m sick… And I don’t wish that I wasn’t. And I don’t really care how uncomfortable that makes you anymore” (Moskowitz, 2019, p. 276).
The above quote is said by disabled teen, Isabel, in one of my favorite YA novels that shows a positive disabled identity, Sick Kids in Love, which is an excellent book to celebrate Disability Pride Month!
Disability Pride Month takes place every July to mark the anniversary of the Americans with Disabilities Act (ADA), which was written into law in July 1990. While defining disability pride varies for folx who have differing disabling conditions, many agree that it is a time to highlight disabled identities, celebrate the disabled community, draw attention to achievements of that community, acknowledge the nuance and wide range of disability experiences, and reflect on successes for disability inclusion in society. Disability Pride Month also highlights existing ableism and injustices in our society and draws attention to progress and changes yet to be made.
As someone who became disabled at the age of sixteen from treatment for bone cancer, who also didn’t identify as disabled until I became immersed in Critical Disability Studies scholarship during my PhD, I can understand why disability pride id difficult to define. How can I be proud to be disabled when life with a disability is difficult in a world created for nondisabled bodies? How can I take pride in calling myself disabled when society has taught us to believe this is a sad existence to be avoided at all costs? For many disabled people and disability justice activists, disability pride is a both/and situation, not either/or: you can feel positively about your disability and recognize that being disabled is challenging because of disabling conditions and the prevalence of ableism (Pulrang, 2021).
To me, disability pride means having a (mostly) positive sense of self (looking at your, internalized ableism), accepting my disabilities as important elements of my personal identity, being proud of myself for navigating ableism and a world that does not always accommodate my body, while also acknowledging that sometimes being disabled is painful, challenging, and just plain sucks. Both/and. This acknowledgement of both/and disability nuance has become central in both my personal life and my role as a teacher educator and scholar of YA literature centering disability.
As Rachel R. Wolney and Ashley S. Boyd wrote in their May 24 YA Wednesday post on disability representation in middle grade novels, it is important, but also challenging, to find and teach novels with disabled representation that do not reinforce discrimination or perpetuate harmful stereotypes and assumptions. I would like to expand upon their advice on selecting texts that reject disability stereotypes to propose highlighting books that explicitly address the nuance of proud disabled identities: characters who possess a (mostly) positive disabled self-image while also drawing attention to ableism and its detrimental effects for disabled people. This work is incredibly important, but it can also be challenging for folx who do not identify as disabled, are not closely connected to the disabled community, and/or do not have experience critically reading YA literature explicitly to interrogate disability representation. As Wolney and Boyd recommended, Patricia Dunn’s (2015) book is a good entry point to approaching disability representation critically; I would also recommend Lessons in Disability: Essays on Teaching with Young Adult Literature, edited by Jacob Stratman (2019).
The above quote is said by disabled teen, Isabel, in one of my favorite YA novels that shows a positive disabled identity, Sick Kids in Love, which is an excellent book to celebrate Disability Pride Month!
Disability Pride Month takes place every July to mark the anniversary of the Americans with Disabilities Act (ADA), which was written into law in July 1990. While defining disability pride varies for folx who have differing disabling conditions, many agree that it is a time to highlight disabled identities, celebrate the disabled community, draw attention to achievements of that community, acknowledge the nuance and wide range of disability experiences, and reflect on successes for disability inclusion in society. Disability Pride Month also highlights existing ableism and injustices in our society and draws attention to progress and changes yet to be made.
As someone who became disabled at the age of sixteen from treatment for bone cancer, who also didn’t identify as disabled until I became immersed in Critical Disability Studies scholarship during my PhD, I can understand why disability pride id difficult to define. How can I be proud to be disabled when life with a disability is difficult in a world created for nondisabled bodies? How can I take pride in calling myself disabled when society has taught us to believe this is a sad existence to be avoided at all costs? For many disabled people and disability justice activists, disability pride is a both/and situation, not either/or: you can feel positively about your disability and recognize that being disabled is challenging because of disabling conditions and the prevalence of ableism (Pulrang, 2021).
To me, disability pride means having a (mostly) positive sense of self (looking at your, internalized ableism), accepting my disabilities as important elements of my personal identity, being proud of myself for navigating ableism and a world that does not always accommodate my body, while also acknowledging that sometimes being disabled is painful, challenging, and just plain sucks. Both/and. This acknowledgement of both/and disability nuance has become central in both my personal life and my role as a teacher educator and scholar of YA literature centering disability.
As Rachel R. Wolney and Ashley S. Boyd wrote in their May 24 YA Wednesday post on disability representation in middle grade novels, it is important, but also challenging, to find and teach novels with disabled representation that do not reinforce discrimination or perpetuate harmful stereotypes and assumptions. I would like to expand upon their advice on selecting texts that reject disability stereotypes to propose highlighting books that explicitly address the nuance of proud disabled identities: characters who possess a (mostly) positive disabled self-image while also drawing attention to ableism and its detrimental effects for disabled people. This work is incredibly important, but it can also be challenging for folx who do not identify as disabled, are not closely connected to the disabled community, and/or do not have experience critically reading YA literature explicitly to interrogate disability representation. As Wolney and Boyd recommended, Patricia Dunn’s (2015) book is a good entry point to approaching disability representation critically; I would also recommend Lessons in Disability: Essays on Teaching with Young Adult Literature, edited by Jacob Stratman (2019).
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To help determine if disability representation is positive, proud, and nuanced when making YA text selections, please consider:
Disabled characters written by authors who share the same disability. While many in the YA community have, understandably, moved away from the term #OwnVoices, it is incredibly important to consider author positionality as it relates to authentic and accurate disability representation. The phrase “nothing about us without us” has been tied to disability rights and activism since the 1990s and we should remember this sentiment when selecting book titles about disabled characters because—through my own and others’ research—authors who write from the position of the same disability as their characters are less likely to perpetuate ableist stereotypes and can more accurately represent the nuance of disabled lived experiences. Further, disabled authors are better equipped to balance positive and frustrating moments in characters’ disabled identity to create that both/and nuance I am advocating for. That is not to say that all nondisabled authors write poorly developed disabled characters—I have read and enjoyed many such books—however, those texts may require a more critical lens when reading.
Disabled characters—and plots—who reject disability stereotypes and common fictional tropes. Historically, disabled characters: served as narrative tools to teach valuable life lessons to nondisabled characters and readers; were seen as innocent and child-like (and deserving of pity) or strange and villainous (and, thus, avoided); were viewed as courageous and inspirational simply for living with their disability; were seen as super human if they could accomplish things despite having a disability; were only seen as valuable if they were cured, fixed, or able to overcome an aspect of their disability by the end of the narrative; were killed off by the end of the narrative. I could go on forever about common tropes of disability in fiction and media, so for the sake of time and space, this Book Riot article provides a bit more detail to help you understand and identify these stereotypes in texts, so you can ultimately highlight books that move away from the perpetuation of these narratives.
Be critical of authors and characters who casually use ableist language or disability euphemisms throughout books. Ableist language includes, but is not limited to, words and phrases that were once used to describe disability, but have since become connotations for other terms. For example, “lame” was a common term to historically reference a physical disability and has now become synonymous with words like “bad” or “uncool.” Similarly, people often use words like “insane” when they mean “surprising” or “unbelievable.” Ableist language also includes misusing words that can trivialize a disability or perpetuate negative assumptions. For instance, saying “I was paralyzed with fear,” “Are you deaf?,” or “My sister is so OCD.” Disability euphemisms include avoiding the term “disabled” by using terms like “differently-abled,” “special needs,” or “handicapable” to refer to a person with disabilities. While most folx who use these euphemisms mean well, they ultimately perpetuate ableist assumptions that disabilities are bad and undesirable. Disabled is not a bad word and to be disabled is not a bad existence. Thus, if ableist language is used throughout a novel, or within an author’s note, educators should draw attention to the terms and engage in critical conversation with students about what the author actually means to say by using the term/phrase, how the term might affect a disabled reader, how the term perpetuates negative views of disability, and how the author may have written a sentence with more inclusive language.
Disabled characters who show a positive sense of self and show the challenges of living with a disability in an ableist world. Below, I explain what this might look like in four of my personal favorite YA books for nuanced disability representation to celebrate Disability Pride Month (and all year long!):
Disabled characters written by authors who share the same disability. While many in the YA community have, understandably, moved away from the term #OwnVoices, it is incredibly important to consider author positionality as it relates to authentic and accurate disability representation. The phrase “nothing about us without us” has been tied to disability rights and activism since the 1990s and we should remember this sentiment when selecting book titles about disabled characters because—through my own and others’ research—authors who write from the position of the same disability as their characters are less likely to perpetuate ableist stereotypes and can more accurately represent the nuance of disabled lived experiences. Further, disabled authors are better equipped to balance positive and frustrating moments in characters’ disabled identity to create that both/and nuance I am advocating for. That is not to say that all nondisabled authors write poorly developed disabled characters—I have read and enjoyed many such books—however, those texts may require a more critical lens when reading.
Disabled characters—and plots—who reject disability stereotypes and common fictional tropes. Historically, disabled characters: served as narrative tools to teach valuable life lessons to nondisabled characters and readers; were seen as innocent and child-like (and deserving of pity) or strange and villainous (and, thus, avoided); were viewed as courageous and inspirational simply for living with their disability; were seen as super human if they could accomplish things despite having a disability; were only seen as valuable if they were cured, fixed, or able to overcome an aspect of their disability by the end of the narrative; were killed off by the end of the narrative. I could go on forever about common tropes of disability in fiction and media, so for the sake of time and space, this Book Riot article provides a bit more detail to help you understand and identify these stereotypes in texts, so you can ultimately highlight books that move away from the perpetuation of these narratives.
Be critical of authors and characters who casually use ableist language or disability euphemisms throughout books. Ableist language includes, but is not limited to, words and phrases that were once used to describe disability, but have since become connotations for other terms. For example, “lame” was a common term to historically reference a physical disability and has now become synonymous with words like “bad” or “uncool.” Similarly, people often use words like “insane” when they mean “surprising” or “unbelievable.” Ableist language also includes misusing words that can trivialize a disability or perpetuate negative assumptions. For instance, saying “I was paralyzed with fear,” “Are you deaf?,” or “My sister is so OCD.” Disability euphemisms include avoiding the term “disabled” by using terms like “differently-abled,” “special needs,” or “handicapable” to refer to a person with disabilities. While most folx who use these euphemisms mean well, they ultimately perpetuate ableist assumptions that disabilities are bad and undesirable. Disabled is not a bad word and to be disabled is not a bad existence. Thus, if ableist language is used throughout a novel, or within an author’s note, educators should draw attention to the terms and engage in critical conversation with students about what the author actually means to say by using the term/phrase, how the term might affect a disabled reader, how the term perpetuates negative views of disability, and how the author may have written a sentence with more inclusive language.
Disabled characters who show a positive sense of self and show the challenges of living with a disability in an ableist world. Below, I explain what this might look like in four of my personal favorite YA books for nuanced disability representation to celebrate Disability Pride Month (and all year long!):
The Silence Between Us by Alison Gervais (2019) has been my go-to recommendation when folx ask me for a book with good disability representation. It is an excellent example of disability pride as readers follow Maya, a proudly Deaf teen, as she navigates a transition from a Deaf school to a traditional hearing school and its lack of appropriate accommodations for her. This book allows readers to examine many layers of systemic and personal ableism (as well as to reflect upon their own implicit biases about disability), as well as to interrogate numerous disability stereotypes. Maya proudly rejects societal pressures to “fix” her deafness, she navigates ableist educational settings and draws attention to accessibility challenges, she disrupts the common ableist assumption that Deaf people desire to be hearing, and she is given the space to feel good about who she is while also expressing frustration as the only Deaf person in her family and school. This novel is inspired by Gervais’s identity as a Hard of Hearing individual living in a Deaf community.
Sick Kids in Love by Hannah Moskowitz (2019) is a favorite feel-good book of mine for its depiction of invisible disabilities and the challenges that come from looking “normal.” Readers follow two main characters, Isabel and Sasha, who meet in a hospital while receiving treatment for their chronic illnesses—rheumatoid arthritis and Gaucher’s Disease, respectively—and who bond over their shared experiences. This novel is an excellent example of disability pride because we see two characters who illustrate the nuance of disabled identity formation for teens with invisible disabilities whose families and friends misunderstand them and make assumptions about them and their capabilities. Sasha has always accepted his identity as a “sick kid” and his character often explicitly calls attention to common ableist views (and then disrupts them). Conversely, Isabel has some elements of a positive disabled identity, but she shows readers numerous examples of internalized ableism, as well as how sexism and ageism intersect with her illness to negatively affect her self-concept. Through her friendship with Sasha, she learns to question her own internalized ableism to develop a more prideful disabled identity. This novel was inspired by Moskowitz’s own experiences as a teen learning how to balance looking “normal” while living with the daily symptoms of a chronic illness.
Breathe and Count Back from Ten by Natalia Sylvester (2022) is a great book to understand the complicated relationship disabled people can have with their disabling conditions. Verónica has never wanted anything as badly as she wants to be a mermaid at a local Florida freshwater spring attraction; however, she has hip dysplasia, a very painful physical disability that will require (another) surgery in her near future. This novel presents an excellent examination of nuance because Roni is able to appreciate her body and feel frustration when it doesn’t work the way she wants. Similarly, Roni appears to have a positive self-concept early in the novel, yet readers see glimpses of internalized ableism and its negative effects on her life, such as when she hides her surgical scars and lies to her family and medical professionals to hide her pain. Readers also see how numerous marginalized identities can affect disabled people by witnessing how Roni’s culture, her family’s immigration status, and their socioeconomic status complicate the circumstances of her disability. Roni’s personal experiences—including her dream to become a mermaid—are directly inspired by Natalia’s Sylvester’s life.
Where You See Yourself by Claire Forrest (2023) is a new favorite that I can’t stop raving about for its nuanced disability representation! Readers follow Effie, a wheelchair using high school student with cerebral palsy as she sets her sights on college applications. Unlike her nondisabled peers, Effie’s decision process is more complicated than just picking the best program for her career goals, the hippest town, or the prettiest campus. Her college choices (and the towns that surround those colleges) must go through a rigorous analysis process to determine the accessibility of physical spaces, as well as accommodations and support systems in place for disabled students. This novel provides numerous examples of ableist beliefs, especially toward wheelchair users, highlights issues of access and “reasonable” accommodations (which are often determined by nondisabled people) in public high schools and other public spaces, and draws attention to common exclusionary practices and policies that negatively affect the lived experiences of disabled students. Effie’s characterization also shows readers the complicated nature of internalized ableism and how possessing a proud disabled identity changes daily, depending on various circumstances. Forrest’s lived experiences as a wheelchair user with cerebral palsy inspired this novel.
Where You See Yourself by Claire Forrest (2023) is a new favorite that I can’t stop raving about for its nuanced disability representation! Readers follow Effie, a wheelchair using high school student with cerebral palsy as she sets her sights on college applications. Unlike her nondisabled peers, Effie’s decision process is more complicated than just picking the best program for her career goals, the hippest town, or the prettiest campus. Her college choices (and the towns that surround those colleges) must go through a rigorous analysis process to determine the accessibility of physical spaces, as well as accommodations and support systems in place for disabled students. This novel provides numerous examples of ableist beliefs, especially toward wheelchair users, highlights issues of access and “reasonable” accommodations (which are often determined by nondisabled people) in public high schools and other public spaces, and draws attention to common exclusionary practices and policies that negatively affect the lived experiences of disabled students. Effie’s characterization also shows readers the complicated nature of internalized ableism and how possessing a proud disabled identity changes daily, depending on various circumstances. Forrest’s lived experiences as a wheelchair user with cerebral palsy inspired this novel.
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More YA books I recommend for disability pride—all written by disabled authors who show the both/and nuance of positive disabled identity while also navigating ableism—include:
Darius the Great is Not Okay & Darius the Great Deserves Better by Adib Khorram (2019 & 2021)
Disability Visibility: 17 First-Person Stories for Today (Adapted for Young Adults) Edited by Alice Wong (2020)
Hell Followed with Us by Andrew Joseph White (2023)
One for All by Lillie Lainoff (2022)
The Reckless Kind by Carly Heath (2021)
This is My Brain in Love by I. W. Gregorio (2020)
This is Not a Love Scene by S. C. Megale (2019)
Do you have any books to add to the list?
Darius the Great is Not Okay & Darius the Great Deserves Better by Adib Khorram (2019 & 2021)
Disability Visibility: 17 First-Person Stories for Today (Adapted for Young Adults) Edited by Alice Wong (2020)
Hell Followed with Us by Andrew Joseph White (2023)
One for All by Lillie Lainoff (2022)
The Reckless Kind by Carly Heath (2021)
This is My Brain in Love by I. W. Gregorio (2020)
This is Not a Love Scene by S. C. Megale (2019)
Do you have any books to add to the list?
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