Representation Matters

Comments: 10



My parents raised me to be a voracious reader. Some of my favorite memories of growing up involve hearing bedtime stories as I drifted off to sleep, learning to read chapter books by myself, and filling my bookcase to the brim with my hauls from Barnes and Nobles. Because of this, I have always found joy and comfort in getting lost inside someone else’s reality, immersing myself in the lives of the characters unfolding in the pages of my book. Part of the fun came from finding connections between my lived experiences and those occurring in the stories I was reading. However, there was always a huge part of my life that was almost never reflected back at me in the children’s book characters I grew to know and love: having a disability.

So many of my favorite childhood books had morals and lessons about accepting people for who they are, but characters with disabilities were few and far between. It was always another reminder that I didn’t quite fit the cookie cutter traits used by so many children’s authors when I was growing up in the early 1990s. Themes of diversity were only just starting to gain momentum at that time. And even then, I can only recall seeing disabled kids in specialized genres.

In fact, the only two children’s books I owned that featured kids with disabilities, both of which I still have, are Andy Finds a Turtle and Patrick and Emma Lou by Nan Holcomb, published by Turtle Books. Emma Lou has spina bifida, and both Andy and Patrick have cerebral palsy. Each book centers on triumphing in the face of disability. And while I loved those books and read them until they were well worn, they were isolated instances of disability in children’s literature. A true sense of inclusion was missing.

Twenty years later, I notice that children’s book sections in libraries and bookstores are inundated with examples of diversity. The shelves are filled with titles promoting acceptance of all races, religions, abilities, sexual orientations, and family structures. It makes me wonder, though: why was I denied the chance to feel included when I was little? And is enough being to done to change that for disabled people now?

What concerns me is that disabled characters are often integrated in the form of tokenism, meaning one token character that could be considered “different” is included in the plot. And even then, such characters are frequently depicted in stereotypical ways, despite being created by authors who may have the best of intentions.

I find this not only in children’s books but also in adult literature. I’ve spent so much of my life missing accurate reflections of my reality in the books I read. From the bedtime stories of my younger years to the ever-growing collection of novels I’ve amassed in my adult years, disability is rarely represented well, if at all. After so many years of reading, I’ve grown weary of this.

There is an incredibly misguided and oversimplified assumption made by many authors that disability is negative, so they either use it as a literary device or avoid including it altogether. Once, I was asked why I’d even want more disability representation in what I read if I choose to look at reading as an escape or a relaxing break from reality. I don’t see my disability as something unfortunate that I want to escape. Perhaps I may want to escape emotional or physical issues related to my disability, but it is inherently part of me – and I’m proud of it. So, to have disability reflected back at me as an unfortunate circumstance, as something that needs fixing, or to have it seem as though disability just shouldn’t exist in a perfect literary world, makes reading the opposite of an escape at times. Instead, it makes reading another reminder of the ways in which disabled people are still not accepted and included.

I’d love to see inclusion of disability in literature become less about morals or tokenism and instead become a seamlessly integrated aspect of literature for audiences of all ages. I know there are authors out there who work tirelessly to overcome misrepresentations and the lack of disabilities in both children’s and adult literature, and theirs is the writing I will continue to seek out to fill my bookshelves.

About Author

Emily Ladau

Emily recently graduated summa cum laude with a B.A. in English from Adelphi University on Long Island, New York, where she was born and raised. This past summer, she completed an internship at the Association of University Centers on Disabilities (AUCD) under the auspices of the American Association of People with Disabilities (AAPD) internship program. Emily is a passionate self-advocate and is pursuing a career in which she can use her communication and love of writing as a means of positive change for all disabled people.



  1. Did you ever read “The Secret Garden”? It’s a children’s classic that features a little boy with an unspecified spine issue who cannot walk.

  2. My mother looked at Asperger syndrome (she lived long enough to learn that I had it along with ADD, or possibly was a misdiagnosis). She was a genius who presumably sought an intelligent, educated man to make intelligent children. (She quipped if intelligence was passed by the mother, think of the options.) She could have written me off as autism spectrum (maybe a so called low functioning autistic would come to mind). She chose instead to work with my intelligence (and my brother’s) using whatever help was available, but holding them accountable for a quality education, even removing my brother unilaterally from special ed (I graduated, which was almost unheard of, Charles County, MD, 1977-1983). I first got a Master’s in sociology, and when quantitative social research failed, the state of Maryland helped me get computer skills, which gave me 13 years in Web development so far.

    Rachel Marsh

    I know many Aspies say they are happy to be who they are. I think if you care about social rewards like careers (my mom made me want it) and relationships (and God made me want that), then no, dammit, you will wish you weren’t an Aspie….

    • Since wishing you didn’t have a disability is generally utterly pointless, finding acceptance and happiness as you are seems a worthwhile goal.

  3. robin hobb is an excellent fantasy writer and her latest series (if i recall the first one is “dragon keeper” in this trilogy) as well as parts of her other series in this universe feature… disabled dragons. i kid you not, i cried. first time in adult reading in fantasy that i felt the characters were real, honest, spoke of how disability is without pity. she also features a set of ppl who are slowly disfigured by their environment (there’s a metaphor for you) and it’s all well written. hobb truly is great!

    one of my fav manga series called REAL is also a must read for folks with disabilities.

  4. The problem with The Secret Garden is that 1) Colin’s inability to walk is connected to his negative attitude, and that once he overcomes his negativity with the help of Mary, he is able to stand and walk, and 2) this “cure” is seen as essential to a full life. Lois Keith has written extensively on the portrayal of disability in classic and contemporary children’s literature, and she has found most of the classic literature and many of the contemporary novels to be wanting for a variety of reasons. Thank you for this excellent piece, Emily!

  5. I agree that The Walking Cure issue in the Secret Garden is massively problematic. However I maybe see the rest of it a little differently. Colin’s problem isn’t his own negative attitude; it’s the fact that he has been abused by his parent/carers for his entire life, with all the attendant trauma and ongoing issues related to that. Looking at it that way, the fact that he finds loving friends and the outdoors is a delight.

    • The abuse that Colin has experienced (and you’re right to point this out) reflects the common attitude toward persons with disabilities during that era–that they had to be hidden away as he was hidden in the 100-room house.

  6. Pingback: A Reflection of Me: What is book diversity, anyway?