The improving representations of neurodevelopmental disorders in literature and memoir

This post was also submitted to the 2016 Betty and Edgar Sweren Book Collecting Contest.

Growing up, reading was my escape, and it wasn’t uncommon for me to haul home fifteen books a week from my school’s collection. Librarian Blankenhorn let me break the weekly book limit, and in fourth and fifth grade, I systematically read every work of fiction in the school library. Although I read broadly, I can’t recall discovering a single book during my elementary school years that featured a character with an intellectual disability. It is natural to seek out characters to identify with, and though I was creative like Ramona, stubborn like a hobbit, and a bookworm like Matilda, I saw no examples of how to handle having a brother with Down syndrome.

Truthfully, I wasn’t fully cognizant of what I lacked until I read Of Mice and Men in the sixth grade. I could empathize with George’s fierce protection of Lennie, but I also wasn’t exactly satisfied with the portrayal of intellectual disabilities. Further, characters with physical disabilities were easier to find–Heidi, The Secret Garden, Peter Pan—but these types were spoiled at best and evil at worst. When my eighth grade book club read Riding the Bus with My Sister, I was struck by the parallels between the author’s life and my own, but it stirred in me questions that I hadn’t previously contemplated. What will happen to Sam after my parents die? Is sterilization ever appropriate for individuals with intellectual disabilities?

I have hundreds of books, which my parents begrudgingly schlep across the country each time I relocate. Accordingly, it would be misleading to suggest that I collected this particular subset of my personal library especially intentionally. It’s more accurate to maintain that my collection has developed accidentally, out of a general love for all books and a personal interest in individuals with Down syndrome and other intellectual disabilities. Many of the books were gifts, some were purchased for book clubs, and one was accidentally stolen from my high school. The collection grows because it is physically impossible for me to leave a bookstore without purchasing something, and I expect that it will continue to grow for the rest of my life.

The purpose of this collection is to line my windowsills, to weigh down my backpack, and to divert me from reality when the world seems like it’s moving too quickly for me. It reminds me of home when I miss my brother, and more importantly, it reminds me of why I devote so much energy to graduate school. I couldn’t resist earning a minor in English during my undergraduate education, and one of my long-term goals is to be a popular science writer. My lifelong love of reading has shown me how to sculpt my writing intentionally, and it has also shown me the deficit of literature portraying those with intellectual disabilities in a realistic and honorable way.

For instance, the conspicuous holes in my collection have little to do with my inability to accrue books and much to do with the fact that individuals with disabilities were hidden from the public eye for many years. Down syndrome was first described in 1866, and in the 1960s some doctors argued that the disorder may be a “modern” phenomenon because there are no obvious early descriptions in the literature. As late as the 1970s, doctors advised parents to institutionalize children born with Down syndrome and tell family and friends that the baby had died during childbirth. An early example of the representation of disability is Frankenstein. Although Frankenstein’s monster hardly has an intellectual disability in the traditional sense, he is alienated to such a degree that his very existence admonishes readers not to deviate from what is natural. The Sound and the Fury’s Benjy is given his own narrative voice, but his account is largely incoherent when taken without the rest of the work. Similarly, Charlie Gordon’s agency in Flower’s for Algernon is defined by his ability to tell his story at the peak of his intelligence, and his regression is clearly meant to be negative.

However, the normalization of individuals with intellectual disabilities correlates with an increase in positive representations of those with disabilities in literature, and there are many more recent examples of books that seek to give voice to those with neurodevelopmental disabilities by allowing them to speak for themselves. The Curious Incident of the Dog in the Night-Time’s Christopher can be interpreted as having some form of autism, but his diagnosis is never formally mentioned. Christopher’s narrative allows the audience to sample his unique mind without suggesting that his disorder is his defining feature. He is a teenager, he is a mathematician, and he is not defined solely by any disability that he may have. Marcelo in the Real World and Mockingbird do the same, and the former has the added distinction of featuring a Mexican-American son of a lawyer as the protagonist. Likewise, The Spirit Catches You and You Fall Down follows the complexities facing a Hmong refugee family with a severely disabled child. Novels like The Memory Keeper’s Daughter and Jewel are written modernly but set in the past, and offer a voice to those whose voices were silenced in previous decades. As literature featuring characters with intellectual disabilities expands, it should become evident that disability affects all ethnicities and social classes, and that it can cause both joy and grief.

The last book that I would like to point out is titled Count Us In: Growing Up with Down Syndrome. The authors, Jason Kingsley and Mitchell Levitz, have Down syndrome and were interviewed to create the book. To my knowledge, it is one of only a few books to actually take on the perspective of individuals with Down syndrome by allowing their own spontaneous thoughts to be published. They claim in their own words that their lives are fulfilling and have value. Published in 1994, this book shows how much has changed since the 1970s, when institutionalization was commonplace, and how much can still be changed to improve the lives of those with intellectual disabilities.

So without further ado, here is my list of books that feature individuals with intellectual disabilities or neurodevelopmental disorders.