It wasn’t until I was an adult that I could finally understand that from the time of my diagnosis, my education was not going to be “complete,” because I did not have the full access I needed. It was as if intensive speech therapy and itinerant teachers were more important than having a sign language interpreter in my classes.
I’ve never written fiction about living with Crohn’s, and to be honest, I’ve never wanted to. Perhaps because I still feel what I felt for years growing up: that nobody wants to hear about my annoying, humiliating misery. Yet I know, intellectually, that this is a shame, because there should be more characters in YA literature who live with chronic illnesses like IBD.
With one word, one look, it hit me that my experience really was abnormal.