We Need More Characters With Chronic Illnesses and Disabilities in Fiction
Can you remember the last book you read that featured a character with a disability that wasn’t central to the plot? What about a Black character, or a gay character, where their race or sexuality wasn’t the highlight of the story? And, most importantly, when was the last time you felt represented by a novel? Has a book made you feel seen lately? I hope the answer is yes, but all too often, books are sadly lacking in diversity.
In my third novel, I included two characters with celiac disease. Now, it is slightly tied to the plot (no spoilers!), but it came about through my own diagnosis in 2018, and my sudden realization that I had never read a book that accurately depicted living with celiac disease. A gluten-free diet is often joked about or described as a fad, but for the 1 in 100 people in the U.K. who have been diagnosed, it is the total opposite.
In brief, celiac disease means you can’t eat gluten. No, not even a little bit. Not even one teeny tiny cake. And yes, kind reviewer who pointed it out, while jam does not often contain gluten, having a shared jar into which people dip their gluten-y knives is not safe for me to use. Cross-contamination is a real concern, which makes eating out extremely difficult. If I eat any amount of gluten, my body has an autoimmune response and begins to attack it, leaving my immune system weakened. I also get some rather lovely symptoms which involve a lot of time spent in the bathroom! While it isn’t very pleasant, this is my reality.
Can you name another book that features celiac disease? I can’t. And it’s the same for many disabilities and chronic illnesses. I was diagnosed with fibromyalgia in 2016 (which I’ve written about lots), and again, I’ve never seen it depicted in a novel. I know it’s impossible for me to read every book out there, but I do read a lot and widely, so it’s disappointing when you feel like you’re not accurately represented.
Why is this important? Well, many of us use the arts as a way to escape, but it’s also necessary for the arts to represent the population. Art can help us see where we fit in the world. Seeing others who are similar to you achieving their dreams can make it seem that little bit more possible to visualize yourself doing the same thing. When my health was at its worst, I didn’t believe that I could achieve my dreams of becoming an author. It felt impossible to do everything I needed to do every day — work, cook, clean, sleep — and find the time and energy required to write. But seeing other authors, such as Louise Jensen, talk openly about their chronic illnesses made the dream feel ever so slightly closer.
Of course, I still need to accept my limitations, and I’ve come a long way in doing that over the years, because everyone is unique, and the same can be said for our chronic illnesses. Fibromyalgia can affect you in so many different ways, and not everyone who has celiac disease experiences the same symptoms, but seeing how others are affected by and how they cope with their limitations can be empowering. Because it’s also important for us to see people with disabilities just living. Why can’t a romance novel feature someone with fibromyalgia, or a wheelchair user be the lead detective on a high profile case? Why is a gay relationship still depicted as “other” instead of the norm? While it is absolutely vital that we still tell the stories where people overcome physical limitations, social prejudices, or other difficult situations, it’s also important to depict people as just, well, people, in all of our diverse forms.
I know there are some fantastic authors out there paving the way for diversity in YA and children’s fiction in particular, but I write fiction for adults, and there’s still a lot of work to be done there. As a queer woman, I try to include LGBTQ+ characters as central to the story, not just token side characters. As someone living with chronic illnesses, I try to portray these characters accurately and not make their disability the most important thing about them. As a rape and domestic violence survivor, I try to portray these themes in a sensitive way that isn’t gratuitous. I do this because I do not often feel seen, and if I don’t, maybe others don’t either.
I’ve had so many emails and messages from people who have read my debut novel, “The Diary,” and told me how good it is to feel as if an author gets you, as if the novel was written specifically for them. I can only ever tell my own stories, but in those stories, people can find connection, acknowledgment and strength, and that’s so important to me.
It’s all too easy to brush off the need for diversity when it doesn’t affect you. For any of us to understand others, it’s important that we are exposed to their stories. To listen, learn and acknowledge. Isn’t that something we all want, to feel as if we have a place in the world? To feel seen?
This story originally appeared on The Bandwagon.
Getty image by MangoStar Studio.