New Initiative: Disability and Chronic Illness Representation in Fiction

Thanks to the We Need Diverse books movement, we’ve seen a rise in books featuring ethnic, racial, and sexual diversity. Which is awesome. I for one am loving all the books inspired by world mythology and legends and have added many of them to my growing TBR. However, I’ve noticed a gap. We keep saying all kids deserve to see themselves in fiction. Yet with all this new diversity their is still a group of people that aren’t seeing themselves on the page.

People with disabilities (PWDs) and the chronically ill are everywhere in our society, yet we rarely see a book that features them. I myself fall into the invisibly disabled and chronically ill and have yet to really see myself represented in fiction in a satisfying way. Yes, I’m white. But I was also born with multiple pre-existing conditions that continue to effect me and will continue to do so for the rest of my life.

Firstly, I have a rare abdominal birth defect called an Omphalocele where my liver and most of my intestines were on the outside of my body. Not only did I need emergency surgery when I was born to even survive, it wasn’t “fixed” until I was seven. I put quotes around fixed because it’s more mended than fixed as I still have issue with my digestive system as a result. Imagine walking around for seven years with your belly sticking out and off to the right like some weird pregnant little kid? Yeah, it’s not fun.

Secondly, I also have a genetic disorder called Neurofibromatosis Type 1. NF causes a lot of issues. Not only do I have to be monitored for tumors, but it can cause bone and spinal abnormalities including scoliosis (check!). As a result I also have two points of fusion in my spine, so instead of the standard 24 vertebrae I have 22. Combined, this can cause a lot of pain and migraines on top of the migraines NF can already cause. I’ve had a golf ball sized tumor removed along with my right adrenal gland that nearly gave me a stroke at 21, and parathyroid and thyroid tumors removed a couple of years ago. NF is twice as prevalent than Cystic Fibrosis and Huntington’s disease combined, but I’d bet a lot of money you’ve never heard of it and have heard of at least CF. Did I mention there’s no cure and the first drug approved to treat the usually benign tumors was only approved within the last year?

Now, Wonder did a great job of portraying a rare birth defect and what’s it like to be a kid who looks different not because of the color of their skin but because they have a birth defect. But there are so many different kinds of birth defects and genetic issues kids can be born with. Five Feet Apart brought awareness to CF by using a similar love story plot to the kids with cancer love story of The Fault in Our Stars. But what about the day to day. They struggle to just live? Or how it can effect life in general? Why romanticize it with a love story?

I also want characters that have an issue that effects them, but it’s just there. It’s not such a part of the plot that it’s all we see. Make it normal to be different because you’re sick. Therefore, I’m going on a mission to read as many books as I can that feature disabled or chronically ill characters, no matter the target age group. I’ll be compiling a list and, if all goes as planned, turn it into a webinar to educate other librarians on getting this type of diversity in their collections. This is one of my goals this fiscal year on my eval so hopefully this goes well. All books read for this will be tagged with Disability and Chronic Illness Rep. If you know of any books, I’m open to suggestions and a list/shelf of what I plan to read can be found on my Goodreads.

First up is Pride, Prejudice, and Other Flavors which features a secondary character with a brain tumor, and another who has suffered multiple miscarriages.