Don’t Say “Epileptics Everywhere.”

“We need to ask ourselves: Are we merely depicting the world as they know it – or are we replicating a particular conventional sense of reality, reinforcing it, contributing to the stability of a word-view we ourselves have been fed.”

During the Super Bowl a person I know posted something about Weeknd’s halftime show and in the comments someone said this,

Epilepetics everywhere are not having a good time atm. Jesus, I can’t even have my head in the same direction as the TV.

Random Facebook Person

And I got a bit tweaked. I don’t know the person who posted that comment. I don’t know if she has epilepsy, but I do and her generalization?

It perpetuated a stereotype about epilepsy. And it also defined everyone who has epilepsy as “epileptics” as if that’s the one defining trait of us all.

Here’s the thing: Not everyone has the same kind of seizure.

They aren’t all big, dramatic, tv seizures.

Sometimes they can be petit mal seizures, lasting less than five seconds. It’s like blanking out but a bit more complicated.

Sometimes they can be a much longer seizure that involves both sides of the brain.

Sometimes they can be a person just having a strange sensation or smell.

Sometimes they can involve a repetitive motion.

But the thing is that not every person with epilepsy has the same kind of seizure and not every person with epilepsy has the same trigger or cause for the seizure.

There’s some more about seizure types here.

But, remember, according to this person on Facebook, “Epilepetics everywhere are not having a good time atm.”

Let me tell you, I have epilepsy and I like the Weeknd and I had a good time with that performance. Was I the only person with epilepsy who did? I don’t think so.

Because remember, just like how all people from one gender, one sexuality, one race, one religion, one job, one state aren’t the same? Well, neither are all people who have epilepsy or autism or ADHD or anxiety or depression or anything, damn it.

Yes. I swore. I swear when I get all self-righteous.

But let’s get to a tiny bit of facts so you can believe me.

According to the Epilepsy Foundation,

For about 3% of people with epilepsy, exposure to flashing lights at certain intensities or to certain visual patterns can trigger seizures.

That’s right. Three percent.

Whether this poster had epilepsy or not, it’s still important for her to realize that her experience doesn’t equal everyone’s experience. It’d also be great for programs with flashing lights at certain intensities to give that three percent some warning, too.

Generalizations are difficult to avoid but as writers and as human beings who want to build a better and kinder world, it’s important to think outside our own experiences and generalizations sometimes.


In a 2005 speech in Nashua, N.H., author M.T. Anderson asked the audience, “We need to ask ourselves: Are we merely depicting the world as they know it – or are we replicating a particular conventional sense of reality, reinforcing it, contributing to the stability of a word-view we ourselves have been fed.”

He was not talking about stereotypes in the sense of disabilities or issues of race, class, gender or sexual orientation, but his question applies to every author who writes a narrative that includes someone with a disability.

We have to ask:

Am I reinforcing stereotypes?  

Am I “contributing to the stability” of stereotypes that I learned as a child?

I’ve discussed in the past how disability stereotypes can be avoided when we’re writing our characters. And I’ll keep discussing it in the future.

In his study, Colin Barnes wrote,

“Disabling stereotypes which medicalize, patronize, criminalize and dehumanize disabled people abound in books, films, on television, and in the press. They form the bedrock on which the attitudes towards, assumptions about and expectations of disabled people encounter daily, and contribute significantly to their systematic exclusion from mainstream community life.” (5)

Barnes

One reason children with epilepsy need good books about their disorder is because society needs those books, too. Social media proves that over and over again.

Society needs those books to combat discrimination and to enlighten its members.

Epilepsy Foundation-convened group on photosensitive seizures, published in 2005. (Harding, G., Wilkins, A., Erba, G., Barkley, G.L., & Fisher, R. (2005). Photic- and Pattern-induced Seizures: Expert Consensus of the Epilepsy Foundation of America Working Group. Epilepsia, 46(9), 1423-25. doi: 10.1111/j.1528-1167.2005.31305.x.)

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One newest LOVING THE STRANGE podcast is about urban legends. And our newest DOGS ARE SMARTER THAN PEOPLE episode is about the B Story and goat voyeurs.

I am a distinguished alumna! No… Seriously!

A few years ago (in June) there was a Vermont College of Fine Arts party at American Library Association’s conference that I was completely stressed about? It was at Tami Lewis Brown’s House. Katherine Paterson was there and I had no idea what I was supposed to say if I actually met Katherine Paterson.

I mean, what do you say to someone who wrote THE BRIDGE TO TERABITHIA?

1. You made me cry
2. You made me make my own fantasy world in the woods in my backyard.
3. No, really you made me sob.
4. Can I have 1/100th of your talent?
5. Gasp! Chortle! Squee!

Well, I did NOT make a fool of myself about Katherine Patterson. And I didn’t avoid the author M. T. Anderson even though he’s so tall I find it intimidating.

And I ended up having to wear my cardigan the whole time because my dress was way too cleavage-y.

How do I know this? I know this because the doorman at the hotel  stared at it and asked if I wanted to hang out. Really. And I am a children’s book author! I am supposed to be not the type of person the doorman thinks he can ask out.

I think part of the problem was I told him I loved him when he ran after the shuttle bus for me. Bad Carrie! Bad! 

Side note: Don’t tell random people you love them even when you do love them in that moment.

Anyway, I went to the party and my hair was flat and I had a cardigan on even though it was 98 degree.

And then… and then…

Katherine and Tami made speeches about the awesomeness of Vermont College. I think Tobin may have too.

And then… And then…

They gave Kekla Magoon of awesome an award for being a distinguished alumna and she cried and was beautiful and I pet her on the back and tried to comfort her while thinking how awesome she is and then….

And then…

I GOT ONE TOO!

Seriously! I don’t know what they were thinking, but I was awarded a plaque and everything and I almost died because I kept thinking, “People are going to take pictures and I am wearing my dumpy cardigan to hide my cleavage AND my hair is flat. Crud. Crud. Crud. Why did nobody tell me?”

But it was amazing.

The whole time I kept thinking that I wouldn’t even be a writer if not for the people at Vermont College and how there are so many amazing graduates who deserved that award, and I kept looking out there in the crowd and seeing those amazing writers, and it was so completely humbling. 

But then I also thought about how terrified I was when I first started at Vermont. Some people were already published. I had barely written one book. I felt – no, I knew – that I didn’t belong and I almost quit that first week because I knew there was no way I could possibly belong there with all those people who had been writing for forever and who knew all the terms like objective correlative and who all the publishing houses, and I knew nothing.

I didn’t believe in myself at all.

Lisa Jahn Clough and Emily Wing Smith and Ed Briant (who said something awesome at a reading to me) then Tim Wynne Jones were the reasons I toughed it out that first semester. I am so very glad I did because Vermont didn’t just make me into a writer it gave me a community of fellowship, of learning and of people who I adore (even if they are tall). 

I am still trying to make it so I can deserve that award. I really am. 

More than that though, I want to make it so everyone can get that kind of dumpy cardigan moment, to get loved and recognized. It might be for running after a shuttle bus. It might be for making a children’s book, but we get to choose who we are, how we interact with the world, who we can be.

I want so badly for everyone to choose empathy, to choose their own power, to choose to make the right choices. I want everyone to feel that love and recognition that I was lucky enough to feel that June.

WRITING NEWS

IN THE WOODS – READ AN EXCERPT, PREORDER NOW!

My next book, IN THE WOODS, appears in July with Steve Wedel. It’s scary and one of Publisher’s Weekly’s Buzz Books for Summer 2019. There’s an excerpt of it there and everything! But even cooler (for me) they’ve deemed it buzz worthy! Buzz worthy seems like an awesome thing to be deemed! 

You can preorder this bad boy, which might make it have a sequel. The sequel would be amazing. Believe me, I know. It features caves and monsters and love. Because doesn’t every story?

In the Woods
In the Woods


ART NEWS

You can buy limited-edition prints and learn more about my art here on my site. 

Carrie Jones Art for Sale

Some Men Aren’t Meant to Wear Scarves, So Be Your Own Style and Don’t Pretend to Be Tom Cruise Or Bieber