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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Author: carriejonesbooks

I am the NYT and internationally-bestselling author of children's books, which include the NEED series, FLYING series, TIME STOPPERS series, DEAR BULLY and other books. I like hedgehogs and puppies and warm places. I have none of these things in my life.

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