It is almost undeniable that there has been an increase in the number of movies and books representing all different angles of living with either a chronic illness or disability aimed at young readers in the past decade. Especially in the young adult genre, there have been many new recent strides in both the quality and number of such stories published.
This rise in numbers is likely a good thing for readers everywhere, as Natalia Sylvester, author of Breathe and Count Back From Ten, put it “there’s [also] been a rise in representation of disability representation in YA written by disabled authors. It’s such an important distinction because for so long, the most amplified narratives have been written by non-disabled authors, and oftentimes the authenticity that these narratives lack is not only not reflective of our realities but also harmful”.
What is the History of Disability Representation in Literature?
Notoriously, many past representations we see of either chronic illness or disability have been written by able-bodied authors, who are only able to tell and write such stories through their lens. While it is not necessarily a bad thing for authors to step out of their comfort zones, it can create instances where those readers who are diagnosed with a chronic illness or disability cannot truly relate to the narrative.
When asked about such instances, Karol Silverstein, author of Cursed, said “When I was a teen newly diagnosed with juvenile arthritis there was virtually no media available where I could see myself reflected. I felt utterly alone. The stories about ‘sick kids’ that were out there—and stories that came later, in the 90s and 2000s, tended to have inspiring protagonists who had a lot of support from their families and friends. Those didn’t reflect my experience either.”
This lack of representation greatly reflects the idea that disability representation is far behind any other marginalized group. As far as on-screen representation goes, only 3.1 percent of characters are disabled, and in media aimed directly at children, that representation drops to less than one percent. Yet, these staggering numbers do not represent the number of people who live with disabilities, as the CDC reports that almost one in four people in the U.S. are diagnosed with at least one.
What is the Importance of Books With Disability Representation?
The state of representation is not necessarily at the place that it needs to be. However, with the increase in popularity, we are seeing more disabled authors be given the chance to share their narratives and draw from their own experiences.
When reading a book, a reader is most often looking to see a version of themselves reflected on the pages. Sylvester knows this, stating that “there’s so much empowerment that comes with seeing yourself reflected in stories. This is especially important when it comes to disability because ableism thrives on silencing us, on convincing us that us voicing our stories and advocating for our bodies is somehow a burden to others, or shameful. It’s insidious and it’s found in everyday language—consider how society often praises people who ‘overcome’ or ‘endure’ their disabilities or medical procedures ‘bravely’. Often, that “bravery’ is implied to be synonymous with us not crying, not voicing pain, or not ‘complaining’ about how difficult it is. It sends a message that their comfort is more important than ours. The flip side of that is the belief that our lives are solely defined by difficulty, and not equally rich in our joys, triumphs, or even ordinary pleasures. But seeing our stories, told by us, represented in media is the opposite of being silent. To be empowered to be truthful and unapologetic in who we are is such an important step in creating a more just and equitable reality for disabled people everywhere.”
Additionally, this is exactly what drew Silverstein to writing Cursed, “I wanted to write a book about a teen whose life was kind of a mess…and then she gets sick. I gave my character permission to be angry, selfish, even self-pitying at times. I also really wanted to show what it’s like to be in chronic pain minute-by-minute. All of this was stuff I hadn’t seen in any books for kids—and stuff I wish had been available when I was going through it myself. I’ve had many readers respond to Cursed with gratitude, saying they’d never felt so seen and so heard. My own sister remarked that she had no idea I was in so much pain, so there’s insight for able-bodied folks in disability stories as well. Cursed shows one version, mirroring my experiences, but there are so many other disabilities and chronic illnesses to explore, so many different stories and experiences to illuminate, and storytellers to uplift. That’s why media with accurate and varied disability rep is so important.”
Moving Forward
People have and will continue to always live with disabilities, and it is so important that they can see themselves reflected in the media that they consume. Going forward, it is now more crucial than ever to highlight the proper authors putting forth such narratives, as well as continuing to fight for accurate representation in media.
