What did the nurse do when she saw that her patient was having a seizure in the bathtub?
She threw in the laundry.
-Common epilepsy joke on the Internet
Lovely, right? Dehumanizing. Who cares if the patient drowns. The laundry is more important.
- Don’t Let One Attribute Define an Entire Character
It’s the same as creating any character. Don’t let one attribute define the character. An author can’t make a character’s one attribute be that she has seizures any more than the author can make that character’s one attribute be that she is only her race or only cranky or gay or hearing-impaired or short or really into ping-pong, so into ping-pong that she only refers to it as table tennis.
Some authors use sketches to create a full character, asking themselves questions such as: What does my character want? How old was she when she crawled? What was the worst thing that ever happened to her in kindergarten? Does she like hot dogs and if not, why?
Characters always need to be well rounded, whether they have epilepsy or not.
“A helpful concept to remember when developing characters for a story is that, as in real life, they should exhibit a mosaic of overlapping, sometimes contradictory traits.” (Epstein 56)
I was at my in-laws house and several teenage cousins were sitting in the living room watching television. Someone was dancing poorly on the sitcom they were watching.
“Oh my God,” one of the girls said. “It’s like she’s having a freaking seizure… look at her.”
“What a spaz,” another girl said.
2. Be Aware of the Stereotypes
Writers can and should incorporate characters with epilepsy and disabilities into children’s fiction and they can do it without perpetuating negative biases against people with disabilities. To do so, authors must be aware of the stereotypes, write against the stereotypes, and create well-rounded characters.
Yeah, I’d like it if tv writers did it as well. But, right now, I’ll take what I can get.
My daughter Emily snuggles into her bed. She stares at me, smiles, pulls me down into a hug and says, “Mommy, I wish you didn’t ever have seizures.”
“Yeah, me too,” I say and smell her hair, which reminds me of bananas.
“It’s not a big thing, though, right?”
Her eyes are teddy bear sweet and her fingers twirl a piece of my hair.
“Nope,” I say. “Not a big thing at all.”
Do a web search on fictional children’s books dealing with epilepsy and you don’t come up with much. Even epilepsy foundations have meager resources for picture book fans. Epilepsy.com lists just eight books that deal with epilepsy in a fictional narrative. Yet, at least 300,000-plus American children with epilepsy have friends and schoolmates. Not many of those children connect with books that deal with the subject.
A majority of books that do exist for children have their characters whose development comes from growing beyond a negative stereotype of someone with epilepsy.
What I’m wondering is why?
In her paper, “Portrayal of People with Disabilities in Children’s Literature: 1940s to 1980s” Maeleah Carlisle wrote, “Children’s literature often reflects the current society’s values and attitudes.” (1)
That is true today.
It is no wonder that many authors use negative epileptic stereotypes for their protagonists. Most people have slight understanding of the disorder. Is this true about other conditions? Other disabilities?
In a paper about epilepsy and stigma printed in the Journal of Epilepsy and Clinical Neurophysiology, the scientist’s conclusion was, “Stigma not only coexists with lack of information, but also with inappropriate behaviors .” (Fernandes 213)
Children’s authors have been unintentionally perpetuating those stigmas. But the lack of literature itself is also perpetuating the silence around conditions and disorders. This is troubling because “Children’s literature can inform and influence children’s images of people with disabilities.” (Carlisle 5)
Colin Barnes and researchers Biklen and Bogdan illustrated multiple ways in which literature and the media stereotypes people with disabilities. Those stereotypes also exist in children’s literature .
Those stereotypes include:
- Person with disabilities is pitiable.
- Person with disabilitiesis the helpless victim of violence.
- Person with disabilities is evil.
- Person with disabilities is saintly, godly, a superhero. Some sort of extraordinary trait occurs to make the reader love the epileptic champion/hero.
- Person with disabilities is worthy of ridicule.
- Person with disabilities is “own worst enemy.” They could get better if they would just take their medicine, not drink, etc…
- Person with disabilities is a burden. They are a drain on their parents’ emotions, money, time.
- Person with disabilitiescan’t live a regular life with normal activities. (Biklen and Bogdan 6-9; Barnes 2-7)
In examining the existing children’s literature, I found that in most books the protagonists’ character development hinged on breaking free of the stereotypes of epilepsy. This is also somewhat true of other disabilities, but not always. It’s the “not always” that gives me hope.
While at Vermont College in January 2006, I told fellow students my thesis topic.
“Wow,” they said.
Then they’d usually nod and something would shift behind their eyes. They would pause, maybe bite their lips, maybe look to the side and then almost every single one of them asked. “Why are you so interested in epilepsy?”
“Because I have seizures,” I said.
“Oh,” said one.
“Really,” said another.
My favorite person? She just nodded and said, “That’s cool.”
3. Do Whatever You Can To Understand Epilepsy
If you are writing about an experience outside of yourself and that experience is often used to ‘other’ people in a really bad way, you need to put in the work so that you don’t reduce your characters, so you can get your head into a space that is close to empathy and understanding.
What’s it like having seizures? It’s not really like anything for me. It just is. But my experience with epilepsy isn’t everyone’s experience with epilepsy and that’s important to remember. There’s no one way to have epilepsy or autism or diabetes or anything. There is no one way to be.
I sort of hate referencing my own life and books when I post about things, because it always seems so self-serving, but when I wrote TIPS and the sequel, LOVE AND OTHER USES FOR DUCT TAPE, I wrote them because I wanted to have REAL characters with complicated problems and complicated thoughts and complicated personalities. My daughter, Em, was begging for this. But something inside of me was begging for this too. I wanted to write a book where someone had seizures, but it wasn’t the end of the world, it wasn’t what defined them, it was just something about them, just like it was something about me.
Author Rick Riordan said in our correspondence, “As far as why is it important to have characters with differences, again I had a very personal reason. I wanted my son to relate to the hero and feel better about the learning problems that were causing him trouble in school. It’s also real life to have lots of different kinds of people, and it can make for richer writing.”
That’s so important. It’s something we’re still learning in so many ways. All of us.
Barnes, Colin. “Disabling imagery and the media.” <www.ncpedp.org/comm/commresrch.htm>. January 17, 2006
Biklen, D. and R. Bogdan. “Media portrayals of disabled people: a study in stereotypes.” Interracial Books for Children Bulletin. 8: 1977, 4-9.
Carlisle, Maeleah. “Portrayal of People with Disabilities in Children’s Literature; 1940s to 1980s.” Beta Phi Mu — Chi Chapter. 1997. Indiana State University. 24 Jan. 2006 1987
Fernandes, Paula. “Stigma Scale of Epilepsy:Conceptual Issues.” Journal of Epilepsy and Clinical Neurophysiology 3 Dec 2004. 21 Jan 2006 <http://www.epilepsia.org.br/epi2002/JEp213-218.pdf.
Jacoby, Ann. “Public Knowledge, Private Grief: A Study of Public Attitudes to Epilepsy in the United Kingdom and Implications for Stigma.” Epilepsia Nov 2004. 21 Jan 2006 <http://www.epilepsia.org.br/epi2002/JEp21http://www.blackwell-synergy.com/doi/full/10.1111/j.
Martin, Jenna. “Teens with Epilepsy: Living with Stigma.” Epilepsy.com. Epilepsy Therapy Development Project.. 20 Jan. 2006 <http://www.epilepsy.com/articles/ar_1089388403.html>.
Mellon, C.A. “Evaluating the portrayal of disabled characters in juvenile fiction.” Journal of Youth Services in Libraries. 2(2): 1989, 143-150
What is it about you that you don’t feel like people don’t understand? That they make into a stereotype?
How can you show someone that you see them? What can you do to see them better?
Random Other Writing and Work News:
The pub date for THINGS WE HAVEN’T SAID, is March? You can preorder it here or anywhere. It’s an anthology that I have a piece in.
I’m starting a podcast. The landing page will be here and also on my website and in all those typical podcast places, hopefully. It will be raw. It will be quirky because seriously… look at me… I don’t know how to be normal.
I am incredibly terrified about this podcast. So, please leave a review once you check it out.
Also, on my website are the stories of how my books like the NEED series or TIME STOPPERS came into being, how I paint to get more into my stories, or more info about me and all that stuff that’s supposed to be on websites.
My nonfiction picture book about Moe Berg, the pro ball player who was a spy, is still coming out March 1 and I’m super psyched about it. You can preorder it.
And there you go, Friday’s blog post. Please let me know here if you can (and not just on Facebook) if you’ve checked it out. I hope you have an amazing, wonderful weekend where you shout out who you are to the world and the world loves you for it.