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What did the nurse do when she saw that her patient was having a seizure in the bathtub?

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She threw in the laundry.

            -Common epilepsy joke on the Internet

 

So, how can authors create convincing characters who aren’t stereotypes of people with epilepsy or other disabilities?
            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 African-American or 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 are disabled 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. She snorted.

    "Freaky."

    "Super freak."


            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.

          One of the commentors on yesterday's post said that she has the same trouble trying to find books with characters who have diabetes.

          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)

            Both 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:

 

  1. Person with disabilities s pitiable.
  2. Person with disabilitiesis the helpless victim of violence.
  3. Person with disabilities is evil.
  4. Person with disabilities is saintly, godly, a superhero. Some sort of extraordinary trait occurs to make the reader love the epileptic champion/hero.
  5. Person with disabilities is worthy of ridicule.
  6. Person with disabilities is “own worst enemy.” They could get better if they would just take their medicine, not drink, etc…
  7. Person with disabilities is a burden. They are a drain on their parents’ emotions, money, time.
  8. 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.”

 


What's it like having seizures? It's not really like anything. It just is. 

             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.”

Comments

( 4 comments — Leave a comment )
seaheidi
Feb. 27th, 2008 03:16 am (UTC)
another great post, carrie. i think the reason why authors only pick the 'main' disabilities: autism etc., is so they can focus such a huge part of the book on it (like RULES for instance). it's what the book is largely about--how the lead character deals with this in her brother--same with eating disorders etc., i prefer, in ALL my reading, to have rich full characters who have full rich lives. sara zarr did a great job in the recent SWEETHEARTS. her character is a binge eater but is also a ton of other things and the book is not about her eating disorder (if it could even be called that).

i think our writing generation is getting better, but as a country (TV, lame jokes etc.) we still have a ways to go.
carriejones
Feb. 28th, 2008 02:46 am (UTC)
I think it's getting better, too. I'm talking to Cynthia Lord later this week, so it's funny that you mention RULES.
(Deleted comment)
carriejones
Feb. 28th, 2008 02:47 am (UTC)
I think society's definition is absolutely part of the problem. I'm glad you brought that up. And I think you're right. It is the whole person, the whole character that is important.
(Anonymous)
Aug. 15th, 2010 12:40 pm (UTC)
Hi...
I'm really a frustrated writer. I want to write, anything I think, I feel, I want, my ideas. But the problems is I really don't know how :(. BTW thanks for this blogs, it helps me for my research and additional ideas. Great! :)

From the Philippines,
Imee
ChooseYourOwnAdventureBooks.org for Kids, Adults and Teachers (http://www.ChooseYourOwnAdventureBooks.org)
( 4 comments — Leave a comment )