Embracing Disability Identity: Representation in Literature as a Tool Towards Inclusivity
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A Note on Terminology
The terminology used to refer to disabilities has been an ever-changing and often controversial topic. In certain settings, like academia and academic writing, it is often recommended to use person-first language, such as “person with a disability” instead of “disabled person.” The reasoning behind this choice is to “put the person before the disability” as to not minimize someone to their disability. Individuals and groups in the disabled community, myself included, have challenged this notion and prefer identity-first language.
In my personal and professional contexts, I use identity-first language because, historically, disability has been seen as inherently negative—and therefore, the term disabled as a bad or negative word, often leading to tiptoeing around disability with euphemistic phrases and terms such as “see the ability not the disability,” “different-ability,” and “handy-capable.” From my perspective and that of others in the disabled community, disabled is a descriptor that captures how my body works, similar to using the word tall. (You would never call someone a “person with tall” because it is understood that saying “tall person” does not rob them of their multifaceted identity.) We perpetuate the stigma by avoiding the term disabled, and it makes it easier for people to ignore disabled people and disability rights issues. With that said, there is no right way to identify: always listen to the disabled person and respect what they choose to be called.
– Isabel Mavrides-Calderon
We are a mother (Maria) and daughter (Isabel) who share a passion for teaching and advocacy. As the mother of a disabled child and a teacher educator (Maria) and as a disabled preservice teacher (Isabel), we aim to foster a sense of belonging and inclusion in early childhood settings by embracing disability identity. Disability representation in teacher preparation programs and classrooms is rarely evident or considered a priority. This is problematic because many new teachers have little personal experience with, as well as a limited understanding of, disability and ways to discuss disability identities with young children.
To address this problem, teacher educators, preservice, and in-service teachers need to be intentional in exploring the topic of disability both with our students and with the school community at large. We wondered how we could use children’s literature to develop acceptance and increase representation of disabilities among teachers, teacher educators, and children. We read Best Day Ever!, by Marilyn Singer and illustrated by Leah Nixon, with preschool children and preservice teachers, respectively. These shared reading experiences served as jump-off points for exploring how disability representation in children’s literature can be incorporated as an essential component of teacher preparation and children’s literacy learning.
I am a preservice teacher pursuing a degree in urban education from a private urban college. I grew up visiting my mother’s preschool class. It was there that I learned to interact with young children, and my desire to become a teacher was born. As a disability rights activist and organizer, I deeply believe that society can be made more accessible through education. I want to be part of that transformation.
As a preservice teacher, I feel the same excitement and curiosity for books as my students. Recently, I read Best Day Ever! by Marilyn Singer to a group of 5-year-olds at their afterschool center. The book tells the story of a dog’s adventure with its companion, a disabled child. My mother bought this book at the NAEYC conference and was very excited to share it with me as an exemplar of positive disability presentation. As I read the book, the children had so many questions—mainly about the dog! When they seemed to be finished with their questions, I asked them to describe the child. Eventually, the fact that he uses a wheelchair came into the conversation.
Reni asked, “Why is he in the wheelchair?”
Josie answered, “He can’t walk, like he has no legs.”
I felt compelled to say something at this point in the conversation. I asked the children, “Do you know that I sometimes have to use a wheelchair?”
The children laughed. I’m not sure if they laughed in disbelief or, perhaps, discomfort.
While I often hesitate to discuss my disability with children in my care, I have found that young children are primarily curious about what equipment I use and how I use it. I have often let them touch my portable oxygen tank or shown them pictures of me using my equipment. This is a natural curiosity because they usually have yet to see many people like me. They are equally interested in my rescue chihuahua, my obsession with Disney movies, and the fact that I speak Spanish at home. When I am open about who I am, the children seem to see me as a whole person.
For disabled preservice teachers like me, the importance of having disability representation in literature and other aspects of the curriculum goes beyond feeling seen. The obstacles that we face in teacher preparation programs and, once complete, in being hired are significant. Nineteen percent of all postsecondary students have a disability. While 16.4 percent of disabled people age 25 or older in the United States completed a bachelor’s degree in 2014, the percentage of nondisabled people who completed a bachelor’s degree is more than double that number (34.6 percent) (US Bureau of Labor Statistics 2015). This discrepancy is due to many factors, including lack of accessibility, resources, and accommodations in the university system and not seeing other people like themselves complete their degrees (Strimel et al. 2023). In order to survive as teacher candidates, preservice teachers may try to hide their disability by “masking” their identity to avoid the stigma that comes with being disabled (Siuty & Beneke 2020).
As someone with an invisible disability, who has the choice to disclose it or not, I face this internal struggle every time I apply for a teaching job. I know that, as a student, having a disabled teacher to look up to would have been beneficial for me, but at the same time, I know all too well the stigma that comes with being a disabled teacher. For one, I am afraid of being seen as subpar or burdensome. In the moments where I do feel ready to remove the “mask” and express my disability, I struggle with the same fears I faced when telling children that I use a wheelchair. Much like children, many adults do not know how to respond.
I hope that next time I read children a book with a disabled character, they will have the prior knowledge and experiences that disability is part of a person, but not the whole person. I also want them to know that disabled people can be happy, successful, and cheerful and that disability is not a tragedy or something to pity. The classroom landscape can serve as children's initial exposure to the broader world beyond their families. By imparting these important lessons and seamlessly integrating them into the curriculum, we can provide children with an opportunity to explore and comprehend the nuances of their own identities in relation to the diverse community around them. Ultimately, this empowers them to cultivate a deep sense of respect for all members of their community.
And if there is a disabled child in the group, I hope that by making my disability identity explicit as a teacher—and through the books I choose to share—that child will feel validated, seen, and accepted.
As a college professor and field supervisor in a large public urban college, I often visit preservice teachers’ field placements. If I’m lucky, I get invited to story time, as was the case when I visited Ms. Mank’s class of 4-year-olds. In this class, part of New York City’s Pre-K for All program, children from across East Harlem gathered eagerly on the rug. This morning, Ms. Mank was reading a book I gifted her class, Best Day Ever!, by Marilyn Singer. As the mother of a disabled child, Ms. Mank has intentionally prioritized highlighting disability as part of the identity of others, and it seemed that the children were fully invested in the story. When asked what the story was all about, Jillian and Thomas concurred that it most definitely was about the “silly dog’s adventures.” After some questions and discussion, Jahan said, “There is a child; he was blonde and was in a wheelchair.”
The next morning, I read the same book to my undergraduate Language and Literacy class. For these students, the book was about a child in a wheelchair. As Antonia, a sophomore, summarized it, “The dog is describing its day with the disabled child.” Nora explained that the class initially thought the book was about disability and noted, “I haven’t seen many books like that.”
In the previous week, these preservice teachers had been asked to use the Culturally Responsive Scorecard (CRCS) (Bryan-Gooden, Hester, & Peoples 2023), a tool developed by scholars at New York University, to assess the diversity of representation in the classrooms where they were placed as interns. While this tool could be used to assess culturally responsive curriculum in general, it has been particularly useful to reflect on what is truly happening in classroom libraries. Applying this tool has been transformative for some of my students as they notice the shocking lack of representation—particularly disability representation—on bookshelves around New York City classrooms. Unfortunately, I have seen this happen every semester: students report that while there seems to be some progress in the representation of race and gender, disability representation in classrooms and libraries continues to be minimal. My students seem not to be surprised, as evidenced by Dina, who wrote in her reflective journal, “I didn’t even think about disability as an identity that needed to be part of a diverse and culturally responsive library.” This is precisely the problem that needs to be addressed.
Advocating for disability inclusion and representation holds a profound personal significance for me. My journey began as an early childhood educator, where I took pride in maintaining what I believed to be a diverse and inclusive classroom library. However, it wasn't until my daughter Isabel became disabled that I recognized a glaring absence in my book collection: meaningful disability representation. The moment Isabel visited my classroom with a mobility aid, the 4-year-old children in my class exhibited curiosity, clearly revealing that they had seldom encountered someone like her in their lives or within the pages of the books we explored. It was an awakening for me, as a general education teacher, to realize that I had not received training on addressing disability as a vital aspect of identity or on how to effectively engage children in conversations about disabled individuals. (For valuable insights on this topic, I recommend reading Sue Mankiw’s article, “Teaching Young Children About Disability,” in the Winter 2021 issue of Young Children.)
Years later, in my role as a college professor, I began to question my own teaching practices, delving into the realm of true inclusivity. In my Language and Literacy class, I cautiously broached the subject of disability representation, recognizing that this was uncharted territory for many of my students—and for me as well. Through this journey of evolving thoughts and intentions, fueled by a fervent desire for society to embrace my child and others like her, I've come to realize that this lack of awareness extends far beyond the confines of my classroom. We must take deliberate steps to ensure that disability inclusion and representation become integral components of teacher candidates’ training, empowering them to create truly inclusive environments for all children. Awareness of this issue is the first of many steps.
Increased awareness of the dearth of disability representation in classrooms using tools like the CRCS allows for an open conversation about the ways in which, using children’s literature, teacher educators can work with teachers, and teachers can work with children. At each level, they can help the learner to understand that—just like race—disability, though a descriptor of an individual, does not define the character themselves. As more literature emerges with positive disability representation, it is fundamental to explicitly address how to select, analyze, and discuss books that include disabled characters as part of our literacy offerings and young children’s literacy experiences. (For further reading and recommendations, see Blaska’s The Images & Encounters Profile: A Checklist to Review Books for Inclusion and Depiction of Persons with Disabilities or Chronic Illness, the Ten Guiding Principles, suggested by Matthew and Clow , and “Including Disability in Early Childhood Curricula: Evaluating and Using Children’s Books” along with the box “Questions to Ask When Evaluating Texts,” by Lori Erbrederis Meyer, in the Winter 2021 issue of Young Children.)
Teacher educators can create syllabi that explicitly integrate space to discuss literature that includes disability representation. These conversations should occur not only as part of a special education curriculum but as part of general education coursework and clinical experiences, including those focused on literacy, as a way of exploring other intersectional identities. Instead of separating disability into a category of otherness, we can recognize and celebrate it as part of any child’s identity and their educational journey. Furthermore, we can be intentional in teaching current and future educators how to discuss disability with young children, including how to react to the natural curiosity that young children may have as they see a disabled person or child (such as in the story What Happened to You?, by James Catchpole and illustrated by Karen George), others’ negative portrayals of disability, and/or reacting to the teasing of disabled children. The capacity to have such conversations with children should be part of the preparation of all early childhood educators.
Why is Disability Representation in Literature Important?
Our experiences highlight the need for increased disability representation in the books children encounter in early learning settings. Although studies have shown the importance of identity representation in young children’s literature (Crisp et al. 2016; Souto-Manning, Ghim & Madu 2021), there are very few books with disabled character representation (Tyner 2019). Even more worrisome, many books reinforce stereotypes (Hughes‐Hassell & Cox 2010). Authentic depictions of disability often challenge our biases, as they convey images that show what disabled children can do rather than what they cannot do (Blaska 2003), and they push us to understand disability as a piece of the character’s identity—a multidimensional, and often complex, identity (Rieger & McGrail 2015).
Understanding and accepting disability as an identity is critical for both disabled and abled children (Smith & Sapon-Shevin 2008–2009). Familiarity is the beginning of reducing negative attitudes toward disabled classmates (Altieri 2008). We know the importance of belonging and community in early childhood, as well as empathy and connection with others. Teachers can embrace the learning and joy that comes from giving space for belonging to each and every student, whether preservice teachers or young children. In addition, seeing a full spectrum of children’s diversity represented in books is a powerful vehicle for teachers to better understand our young learners. Gina, one of Maria’s students, wrote in her journal: “I decided to read to them Best Day Ever!. They LOVED it, and I was so surprised at all the interesting conversations we had. I even learned that one of the children’s brothers is in a wheelchair. She never mentioned that before.”
Moreover, disability representation in literature validates disabled teachers’ identity, as Isabel explained: “As a disabled person, I’m aware that our classrooms are the framework for our future society. To be seen, our classrooms and our books should be our starting ground for acknowledging my presence and value.”
Representation in literature may seem to be a trivial pursuit in the face of larger policy issues, but they are intrinsically connected. Before the Americans with Disabilities Act was passed, disabled people were hidden away from society in institutions. This was an ingenious structure for keeping the status quo because when you don’t see disabled people, it is easier to ignore their rights and needs. Including disability in literature makes it much harder to forget to make classrooms inclusive for disabled students and teachers alike. For teachers and aspiring teachers with disabilities, disability representation in literature introduces young children to disabled persons as full people whose identities are not bounded by their disabilities (Rieger & McGrail 2015). When disability becomes an ongoing and meaningful part of curricula, it also prompts all teachers, disabled or not, to consciously think about disability and examine their biases (Blaska 2003). It starts and sustains a crucial conversation—one that needs to be included in the diversity, equity, and inclusion (DEI) training teacher candidates receive. If one in four Americans is disabled, we need to start working to prepare teachers to broaden their toolkit by incorporating more disability representation in early childhood literature.
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Tyner, M. 2019. “The Numbers Are in: 2019 CCBC Diversity Statistics.” CCBlogC. Madison, WI: Cooperative Children’s Book Center. ccblogc.blogspot.com/2020/06/the-numbers-are-in-2019-ccbc-diversity.html.
US Bureau of Labor Statistics. 2015. “People with a Disability Less Likely to Have Completed a Bachelor’s Degree.” TED: The Economics Daily. Washington, DC: US Bureau of Labor Statistics. bls.gov/opub/ted/2015/people-with-a-disability-less-likely-to-have-completed-a-bachelors-degree.htm.
Maria Mavrides Calderon, EdD, is an assistant professor at Hunter College, CUNY in New York City. Maria has worked as an early childhood teacher, administrator, teacher educator, and advocate for over two decades. [email protected]
Isabel Mavrides-Calderon is a student, disability rights activist, and aspiring special education teacher and researcher. She has led several advocacy campaigns focusing on disability justice and accessibility. She is a Teen Vogue 21 under 21 Revolutionary Youth awardee. [email protected]