carriejones

How do you make a disco burn baby burn?




Give an epileptic a torch.

Whats blue and doesn't fit? 
A dead epileptic.

How do you make a milkshake?
Get an epileptic to hold the glass of milk while they're having 
a fit.

What's the difference between an epileptic Oyster shucker and a 
prostitute with diarrea?
The epileptic oyster shucker shucks between fits.

- More jokes about epilepsy found on the Internet, specifically at realhumor.co.uk

The thing that makes me wonder sometimes is the lack of outrage. If there was a book all about Susie dealing with the fact that she is a girl, and her coming to "terms" would her condition of girlness, how would the writing world respond? If there was a book about race where all the main character was... was a nationality, how would we respond? Wait. There has been. How did we respond? How did we, as a writing community move forward? Or how about religion? If the book was about dealing with the disadvantages of being Catholic or Jewish or Muslim or Buddhist or a Quaker and that character's entire identity was comprised by religious stereotypes, how would we respond? Do we notice?

    It isn't just jokes on the Internet.

    Negative epilepsy and disability stereotypes pervade children’s literature. Many authors base their character’s development on these negative stereotypes. It does not have to be this way. Authors can be cognizant of those stereotypes and try to write beyond them. Similarly, authors who create well-rounded characters with multiple dimensions are already one step away from those stereotypes.

            Since the books already exist that perpetuate negative stereotypes about people with epilepsy and disabilities, teachers, parents and librarians need to do their part to expose their stereotypes to readers and help children spot those stereotypes themselves. (Biklen and Bogden 5)

It would be nice to say that the only problem with children’s epilepsy and disability literature is the negative stereotypes influencing character development, but the truth is that in lots of cases the books themselves are missing. No one author can reflect all the experiences of seizures in one narrative nor the entire spectrum of autism or dyslexia or diabetes. There needs to be a multitude of books with secondary and primary characters having these conditions. In terms of epilepsy narrative, there needs to be heroes, villains, parents, brothers and sisters who have seizures. There needs to be a wide range of epileptic experiences in books just as there is in life. Only then, can the stigma be erased. Authors have to actively avoid stereotypes, incorporate disabled secondary characters as well as protagonists. Only then can things such as epilepsy stop being a hidden neurological condition, something to be ashamed of, something to be feared.

According to the Epilepsy Foundation, “Epilepsy is the most common neurological condition in children and the third most common in adults after Alzheimer's and stroke. Despite modern therapy, about one million people continue to experience seizures or significant side effects from treatment.” (Epilepsy Facts)

Epilepsy is common, yet except for brave children’s authors such as Ellen Howard, Sherman Alexie, Perry Moore, and E.M.J. Benjamin, epilepsy is practically ignored in children’s literature. That’s what’s scary. But with other conditions the absence is even more acute.

 People learn from books. Books affect attitudes. When it comes to epilepsy and other conditions and syndromes, there is so much ignorance still out there. There is so much ignorance that many authors who are trying to help, end up perpetuating stereotypes. More positively the existence of these books also make people think about things.

In February 2005, the American Medical Association released an article entitled “Understanding Epilepsy.” In it, Jeanne Galatzer wrote: “The restrictions on daily activity and years of disability would be bad enough, but they are made worse by the stigma that is still attached to epilepsy. ‘Even today a surprising number of people believe epilepsy is supernatural, caused by possession,’ said Dr. Engel. ‘Many people still believe that epilepsy is a psychiatric disorder or mental retardation. An editorial in the British Medical Journal recently put it well: ‘The history of epilepsy is 3,000 years of ignorance, stigma and discrimination and 100 years of knowledge, stigma and discrimination.’” (Galatzer)

It is important as authors, and as storytellers, that we help rid the world of that 3,000 years of ignorance, and give children good, compelling stories that have something to do with seizures, but have just as much to do with character, and moving beyond the stereotypes.

Author Cynthia Lord's debut middle-grade novel won a lot of national attention and awards, including the Schneider Award. The book is about a girl who is growing up, finding love, dealing with parents and some identity issues during the summer. The girl has a younger brother, David, who has autism.

I asked Cynthia about her treatment of multiple characters with disabilities or conditions in the book.

"I think it's good to remember that though the disability may feel like a  separate thing to those us who are not disabled, it is integral to the  disabled person, himself. It a thread in the fabric of who he is--part of  his history as well as his present. It shapes decision-making, family  dynamics, and daily routines--and yet he probably doesn't think about each  decision that way.  It's simply how it is. And if it's a life-long disability, he doesn't know a different way to be.  It's his own normal," Lord said.

                She continued, "My daughter is often asked what it's like to have a brother with autism, and she always just shrugs. 'I don't know what it's like not to have a brother  with autism,' she says."

 When doing school visits Lord also fields a lot of questions from children about autism and David and she makes sure as an author to not treat disabilities with a voyeuristic lens.

                "We have to be careful not to give the tourist view of disability. We must strive not to swoop in and skim off the obvious differences and behaviors  and miss the complexities and normalcy that underlies the experience.  I often remind kids when I'm speaking to them about RULES that David doesn't only and always act the way he does because he has autism.  Sometimes, he's just being an annoying little brother and looking to get his big sister's attention."

In a May 2005 speech in Nashua, N.H., writer M.T. Anderson said, “This is what we must do as writers. We must build our home from nothing. We must rise every morning, and we must sing the world into existence, star by star, peak by peak, child by child. We must begin in darkness, and end in dawn.” (Anderson)

Anderson’s words can be used for authors dealing with epilepsy themes and characters or any disability themes and characters. It is only when we recreate a world without our original preconceived stereotypes and bigotries that we can sing good, viable and true stories into existence, and do it as Anderson says, “star by star, peak by peak, child by child.”

For people with seizures and authors with seizures, for people with disabilities and authors with disabilities, it is time to stop hiding. It is time to start singing. The witch hunts must end. The stereotypes must be banished. Let the enlightenment begin. Children’s literature dealing with epilepsy and disability, with autism and attention deficit disorder, may have begun in darkness, but it will end in light.