I’ve been working on my summer reading list and it is full of great young adult titles. But one thing I’ve noticed, that I never did before, was how often epilepsy and seizures are mentioned in these books. And how often they are mentioned in derogatory terms.
My 16-year old daughter has epilepsy. She had her first seizure when she was 2 years old and through the years we have a tried a number of treatments to curb the seizures. This is not only because of the physical toll seizures (of all kinds) take on one’s body, but also because of the great social stigma still associated with them.
For years Caitie would not tell anyone about her condition. When we moved to a new town in Grade 4 I think she saw it as an opportunity to start fresh. She’d been seizure free for a few months and no one at her new school knew she had epilepsy. So she decided to keep it that way. In the summer of Grade 5, when she started having seizures again and had to go on medication, she kept her condition secret by becoming distinctly anti-social.
Over the next few years, Caitie rarely had friends over to the house. She was lonely and I think she really wanted to let people into her life but both the side effects of the medication and fear of having a seizure in front of her peers kept her to herself. I encouraged her to become more social as much as possible but in the end she spent most of her free time at home with us.
That changed when she was admitted to Children’s Hospital in 2013 for a week-long round of tests. One of the tests was a video EEG, which required her to have wires glued to her head and special cap put on. When Caitie went to the hospital and saw the kids who were having a lot of seizures, she decided to start vlogging about her experiences and posting on her social media about it. When she posted photos of herself all wired up in the hospital, some of her friends back home were shocked because they had no idea she had epilepsy.
When she came back home, she had to face the questions about her disorder. But talking about it went a lot smoother than she expected. And before long she was fundraising to raise awareness. Her best friend, Dan, and her started the Epilepsy Awareness Squad and have been doing a lot of advocacy work.
Still a part of me didn’t think that the stigma associated with epilepsy was really so great. After all, we didn’t notice people picking on Caitie. I think we actually felt that most of her anxiety with respect to seizures was over-reaction. She was absolutely terrified of having a clonic tonic seizure in front of her peers. And even after Dan and her started the Epilepsy Awareness Squad, she rarely told him if she had a small seizure at school (even when they were in the same class together!).
But in the last week I’ve read two bestselling young adult novels (Conversion by Katherine Howe and Shiver by Maggie Stiefvater) and while neither novel is actually about epilepsy, both books mention “epileptic seizures” in a derogatory way. And even worse, both mentions are in passing – neither is the focus of either story.
And I have to wonder, if such references are this prevalent what does it do to people who are affected by epilepsy. This normalization of the negative so we don’t even realize it is there can be extremely harmful to the individuals. So in effect seizures and epilepsy have come pejoratives. We see this happen often in feminist terms or racial terms and most of us know it is wrong to use these terms to describe actions or identify a person. It’s a matter of political correctness.
When we use pejorative terms without realizing it, it is like a lightning rod to the person who identifies with the term. I’ve seen this happen with Caitie. We will be at an event or watching a video or movie and she will get upset because someone uses the term epileptic or seizure in a derogatory way and (here’s the kicker) I won’t even NOTICE that it was said. The effect on someone who is not affected by the negative usage of the term is minor but the effect on the person who may self-identify with the term is hurtful.
And this goes beyond epilepsy, of course. Throwing insults to someone in a teasing matter related to gender or sexual orientation happen all the time (“Don’t be such a girl.” “That is SO gay”). But what is surprising to me is how often references to seizures and epilepsy are also used in that way (“Are you going to have an epileptic seizure?”).
I guess my point is that we should be aware of the words we use and understand that words have the power to hurt, even if they are just used in passing. I think as authors of young adult fiction this is even more important. I know that often we might be tempted to use these kinds of words as we strive to write something that is authentically young adult but I don’t think authenticity requires us to use words that will hurt others. I think it is our duty as authors to choose the words we use carefully and with heightened awareness.
Peter Street
im half way through wiring about a positive character with epilepsy – im a pro’ writer with epilepsy and autism – my latest book ( just out) is about being accepted in the community
Gabi
Hi! So, as an adult with epilepsy, I’ve felt starved for books that tell stories about people with me, and yes, I’ve had it up to here with seizures being used as a joke. “You dance like an epileptic chicken,” isn’t actually funny, and yes, we hear it all the time. If it helps, I found a couple of YA books that I liked that featured characters with epilepsy. My most important litmus test for a book with a disabled character is that the character with epilepsy doesn’t die. (It’s surprisingly rare!) One was The Last Book In the Universe, by Rodman Philbrick. It’s set up in a post-apocalyptic dystopia, and the main character is a boy/young man with seizures. He and an old man end up going on a quest together, and through great struggles, find a certain kind of success. The other was One Hundred Sideways Miles, a realistic fiction novel by Andrew Smith. A boy (I’m still looking for a book about a girl, it’s got to be out there somewhere…) struggles with his own health and the grief of losing his mother. I liked it less than The Last Book in the Universe, but I’m a big fan of dystopian fantasy, so it might just be me.
Hopefully you enjoy at least one of these, or you get started on your own reading journey so your daughter has POSITIVE representation, instead of just a lack of negativity. I can’t tell you how good it felt to see an epileptic person as the main character, even the hero, instead of being my own personal burden.