In the 1980s, there were no video gaming consoles in hospital rooms. It was pretty much up to you to amuse yourself — unless you were lucky enough to be in a children’s hospital. Chronic illness and/or disability tend to be quite isolating, as you are pulled out of school for doctor appointments, treatments and hospital stays. Separation from peers is difficult, as is the obvious gap in life experience. The world goes on around you, even if it feels like you are stuck in some kind of purgatory.
Finding solace in books has helped me survive a lifetime of chronic illness, life-threatening illness, disability, and two organ transplants. Reading for me is a transcendent experience — books let me do the things my body won’t. Skilled writers bring a physicality to their stories more immersive than any virtual reality game. Of course, based on the science fiction books I’ve been reading that might not always be the case, but for now it is true.
However, reading is not only about vicarious living for limited bodies. I can remember many a time when my mother was able to calm me down or keep me distracted in an unpleasant situation by reading me a story. Listening to her voice and getting wrapped up in a tale let my body relax and my attention drift to another place.
As time went by and I could read to myself, books also became an escape from pain or fatigue. When my body tenses up or I am anxious, reading helps quiet my mind and refocuses me. It is also easy entertainment — no wire hook ups or bluetooth, or even screens (for the most part). Just me and the written word.
Reading is also about finding connection. Christina Minaki, author of Burning the Boats (2018), called me in May to ask what I thought was missing from children’s literature when I was a kid. I had to consider her question for a long time, but I finally have an answer. When I was a kid, books about other kids with chronic illness more often than not ended with death. While I had my Jean Little books and a window into the world of having a disability, I wasn’t disabled yet, and sometimes I was annoyed by them. Likewise with Lurlene McDaniel books, because while I read them fervently hoping for commonalities since they were about illness, they always seemed to be more about the tragedy of it, and absolute injustice of a life cut short.
Are books getting better when it comes to an honest portrayal of chronic or life-threatening illness and/or disability? Slowly. There is a lot of attention about diverse books by diverse authors, and technically that does include characters and writers or illustrators dealing with illness or disability, but this aspect of being diverse often gets overshadowed by racial and sexual/gender equality. The books that do feature characters with disabilities, such as Wonder by R.J. Palacio, place emphasis on the character being brave and inspiring, mostly angelic, and so strong because they have to endure what others perceive to be an intolerable existence.
This is a terrible message.
Like Harry Potter, children who were previously dealing with life-threatening or even terminal illness become the children who lived. Science has evolved to a point where we live with chronic illness or disability as opposed to our lives being tragically cut short. Though the Harry Potter series by J.K. Rowling is not about illness or disability in a conventional sense, it is about picking yourself up when the worst has happened, and living your life despite knowing the bad guy can return at any time (Lord Voldemort in Harry’s case, organ failure in mine).
I eventually learned I could find what I was experiencing in books, as long as it was metaphorical. Thus I am drawn to dystopian fiction — the stories where the main character’s world falls apart (at times literally) and they have to pick up the pieces. One of my favourites is Katniss Everdeen in Suzanne Collins’ Hunger Games series. How do you survive psychologically and physically when your life depends on the death(s) of others? It’s a more apt metaphor for organ transplantation than you’d think.
Characters in the books I read having a physical disability and breaking the mold is an exciting and rare occurrence; one usually found outside of a contemporary novel. I was thrilled when I read Feeder by Patrick Weekes, because it features a cast of characters with many different abilities who come together to fight monsters.
While I wait for more realistic portrayals of illness than The Fault In Our Stars by John Green, I console myself with Burning the Boats by Christina Minaki and The Theory of Hummingbirds by Michelle Kadarusman. Both give me hope for a future where there are more children’s and teen book writers who have experience with illness and disability and are willing to tell an unromanticised, engaging story.
In 2014, Inspired by Terry Fox’s and Rick Hansen’s Canadian journeys, Amy Mathers decided to honour her passion for reading and Canadian teen literature while working through her physical limitations, by completing a Marathon of Books.
Amy read one Canadian teen fiction book for each day of 2014 and raised funds for the founding of the Amy Mathers Teen Book Award. The Award honours excellence in teen/young adult fiction and is administered by the Canadian Children’s Book Centre.
For more information: http://bookcentre.ca/programs/awards/amy-mathers-teen-book-award