The importance of representation of disability in our curriculums and the books children read

Carlyn Mueller is Assistant Professor in the department of Rehabilitation Psychology & Special Education, University of Wisconsin-Madison. Carlyn has cerebral palsy, and here she recalls the books that played an important role in her own childhood. She gathers research about the importance of representation of disability in children’s books, and suggests strategies for increasing representation in school and at home.

The role of books in my childhood

Growing up, I was a voracious reader. As a kid with cerebral palsy, I also spent many summers recovering from major reconstructive surgeries. This included hamstring lengthening, insertion of plates into my hips, and tendon transfers so that my feet would move straight when I walked and that I could do so with less pain. Before each surgery my parents would take me to a bookstore to prepare, and I would seek out the longest, most giant books I could find. Gone with the Wind, A Tree Grows in Brooklyn, and others became my elementary school distractions for week-long hospital stays and months in recovery at home. Now, as an adult who studies disability identity development in youth, I look back and have a different kind of lens on my recovery book selections. Books became not just a distraction, or a window to an experience and world different from my own; books also became my first attempt at learning and connecting with a broader disability community. In the absence of any books that described my experiences or included characters with cerebral palsy, I sought out and became a little obsessed with books that included disabilities and health concerns of all kinds. I distinctly remember reading and rereading Jodi Picoult’s My Sister’s Keeper, immersing myself in another young girl’s surgeries and hospital experiences.  Stacey, a character from The Babysitter’s Club series, became a way through which I understood my own friendships as I tried to “keep up” with my nondisabled peers and manage my disability, much like Stacey managed her diabetes. Though their disabilities and health concerns were extremely different from my own, I found a window into my own experience and a way to understand myself and what I was experiencing and learning as a child.

What does research tell us?

Importantly, research tells us about the significant way that representation of diversity (including representations of gender, race, disability, and other intersecting aspects of identity) in youth literature impacts the identities and understandings of youth like me alongside my nondisabled peers. Literature that includes positive representations of disability may foster positive behaviors and attitudes towards people with disabilities (Match & Belcher, 2012), through providing ways for able-bodied people to question and understand their reactions to people with disabilities (Prater & Dyches, 2008). Eventually, this exposure to others’ experiences nurtures awareness and understanding of disability (Leininger et al., 2010) and peer acceptance (Matthews, 2009). While the context of nondisabled youth learning about disabilities is important, particularly in inclusive classrooms where teachers can and should facilitate conversations and learning about difference (Beneke, 2021; Bialka et al., 2023), what most impacted me as a child was not the way disability was understood and taken up by my nondisabled peers, but my own internal experience and understanding of disability identity and community. Disability identity, or a “positive sense of self and feelings of connection to, and solidarity with, the disability community (Dunn & Burcaw, 2013, p. 148) is impacted by many different resources, like exposure to representations of disability in literature. In this way, representation of disability across literature, media, and our larger societal messaging impacts both nondisabled people’s understandings of disability and people with disabilities themselves.  In short, representations of disability in literature for youth not only positively impacts the youth themselves as individuals, but the community and larger context surrounding them.

Looking for positive representations of disability

Many researchers and disability community members have critiqued portrayals of disability in children’s literature to be focused primarily on pity and exclusion (e.g. Kleekamp & Zapata, 2018). It is extremely important to be critical about the representation of disability present in texts and for teachers, families and others to consider the ways disability is discussed in classrooms and communities writ large. For example, Hayden & Prince (2023) developed a rubric for evaluating and analyzing strengths-based depictions of disability in children’s picture books, including whether the character with a disability has “similar life experiences as peers without disabilities” or that the “illustrations and images show the character with a disability actively involved in their environment” (p. 247). As more and more researchers, family members, people with disabilities and their allies and accomplices push back on negative perceptions of disability across all aspects of media and popular culture, many writers have responded with beautiful examples of positive representations of disability. There are so many recent texts for children and young adults, such as Alice Wong’s Disability Visibility or the picture book from Kelly Fritsch, Anne McGuire & Eduardo Trejos, We Move Together. Some books are even authored by kids and young adults with disabilities, such as Mia Lee is Wheeling Through Middle School by Eva Shang and Melissa Shang, My Rainbow by DeShanna Neal and Trinity Neal, and Darius Hates Vegetables by Darius Brown.  These depictions unapologetically depict disability culture, celebrate mobility aids, joke about inaccessibility and tap into a specific sense of disabled humor, use a variety of person first and identity first language to describe the community, and develop a sense of activism, connectedness and shared purpose in disabled people.

Strategies for increasing representation in school and at home

In addition to representing disability in children’s texts and literature, there are important other ways that “representing” disability might impact individual identities and understandings of disability. Ivanova Smith, a self-advocate and disability activist, and I co-wrote a paper focused on the importance of thinking about disability identity and representations of disability for youth across schools and communities (Smith & Mueller, 2021). We argued that families and schools can play an extremely important role in increasing disability representation in their classrooms and curricula. This role ranges from celebrating disability history, alongside developing disability identity and a sense of power and pride in students. For example, teachers, family members, and other allies of people with disabilities might consider some of the following actions as they are thinking about positive representation of disability in their classrooms and communities:

• Including diverse depictions of disability in their classrooms, home and school libraries, and curriculum, especially of people of color and LGBTQ+ people with disabilities
• Discussing disability openly and honestly in classrooms, schools and communities and with individual people: What have youth heard people say about disability? What are their youth with disabilities’ feelings and thoughts about disability?
• Avoid comparisons between people with and without disabilities that emphasize how people with disabilities are “just like everyone else”
• Emphasize the power and pride that can develop when people identify with disabilities, learn about disability history and have role models with disabilities

“I didn’t have any role models for, how do you grow up with a disability”

During my dissertation research, a participant recounted a story about a social worker, who was disabled and regularly worked with young children who had disabilities. The young child said to the social worker, “I’m glad I met you, because I didn’t know that people with disabilities could grow up to be adults.” In telling the story, my participant remembered crying and realizing that this was the first time she had heard something that she also carried around with her. The participant knew, somewhere and somehow, that she would grow up with a disability; but she wasn’t sure how. In her words, how would she “live in the world, and work in the world, and be productive and be relational”? In some ways, this is a larger problem answered not just with literature or media representations of disability, but by celebrating and valuing disabled adults as experts in their experience in schools and communities. However, maybe a small step towards that imagined world begins with valuing the representation of disability that children with disabilities see in their libraries; to give them ways of understanding their experience, sharing it with an even fictional character, and working towards a world in which that experience is the norm.