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.)

LET’S HANG OUT!

HEY! DO YOU WANT TO SPEND MORE TIME TOGETHER?

MAYBE TAKE A COURSE, CHILL ON SOCIAL MEDIA, BUY ART OR A BOOK, OR LISTEN TO OUR PODCAST?

JUST CLICK ON THIS LINK AND FIND OUT HOW WE CAN.

And to hear our podcast latest episode for DOGS ARE SMARTER THAN PEOPLE about cats on Tinder and other bad advice click here.

Our first episode of LOVING THE STRANGE is here. It’s about loving places for no logical reasons.

The visuals for our podcasts are all on Carrie’s YouTube channel. You can like and subscribe there, too!

Shaun Takes Over the Blog: Hunt and Peck Method

I believe that the stories that come from the heart are always the best ones!

            I don’t know what the productivity rate of the average author is, but in this house, it is high. Real high!

Not from me of course. You can’t possibly be productive when, no matter how much you type, you absolutely refuse to give up the two-finger hunt-and-peck method. Well, I actually use three fingers because I use my right thumb to hit the space bar as I use both of my middle fingers to find the appropriate letters. Carrie says that I am a pretty fast hunter and pecker, but when I watch her type, I am convinced that my method is the inferior one.

            Hardly any of that has anything to do with my point though, so please forgive me.

My point is that Carrie is always working on more than one book (of her own making) at any given moment. I am usually tasked with helping her edit her works at some point in time. My reading skills are far superior to my typing skills, and I love helping her out because then we can talk further about other aspects of her books and I get to read them before they are actually printed.

At this very moment, I have chapters from three different books of hers on my desk awaiting my attention as soon as I am done hunting and pecking this out. One of the books has been submitted to her agent and she is doing recommended edits on that, the second one will be self-published and she has not decided which route to go with the third.

            Part of my point is this; it doesn’t matter how much you produce or how many times you read your own manuscript (No matter what kind of superior editor you think you are.) you will always miss some of your own mistakes. It really pays to hire someone to edit your work for you! Of course, you must edit it yourself first, but I would always advise an author to employ an editor, even if it is someone who you are paying with home-cooked meals or similar wages.

            This is especially true if you decide to self-publish your work.

Carrie and I have been purchasing a lot of self-published books lately. She loves to support other authors, and while some are very well edited and formatted, some are definitely disappointing. You work very hard on making your masterpiece come together, shouldn’t you see it through to the very end and produce a book to be proud of for more than just the amazing words that are on the paper? So, this is where I make my shameless plug for Carrie. Not only does she offer editing for other authors (I never touch a paying customer’s work, I promise!), but she can format your self-published book and help you to be a better author. You can find information about all of the professional she offers at carriejonesbooks.blog. Or at the links below.

            Now that I have done my professional and husbandly duties (which I truly love doing), let me say that everyone has a story to tell and those of you that take the time to try and capture it in some medium deserve mad respect!

Let me also say that if you are writing because you want to make bags full of money, I can very much appreciate that, however, you may want to first concentrate on telling your story in the most heartfelt way possible. I believe that the stories that come from the heart are always the best ones!

Follow your heart and have a most incredible week, people!

Shaun



LET’S HANG OUT!

HEY! DO YOU WANT TO SPEND MORE TIME TOGETHER?

MAYBE TAKE A COURSE, CHILL ON SOCIAL MEDIA, BUY ART OR A BOOK, OR LISTEN TO OUR PODCAST?

JUST CLICK ON THIS LINK AND FIND OUT HOW WE CAN.

And to hear our podcast latest episode for DOGS ARE SMARTER THAN PEOPLE about cats on Tinder and other bad advice click here.

Our first episode of LOVING THE STRANGE is here. It’s about loving places for no logical reasons.

The visuals for our podcasts are all on Carrie’s YouTube channel. You can like and subscribe there, too!

Don’t Dabble Writers, Commit. We Know What a Hyphen Is and That’s Sexy.

Dogs Are Smarter Than People: Writing Life, Marriage and Motivation
Don't Dabble Writers, Commit. We Know What a Hyphen Is and That's Sexy.
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Jared Leto is a somewhat polarizing guy for who-knows-what reason. He’s model-pretty, a vegan, an award-winning actor and a musician. And there’s this quote I (Carrie) read that struck a chord. 

“When you commit to something that’s seemingly impossible,” he says, referring to ascents both metaphorical and literal, “and you’re pushing through things that are seemingly hostile, and then you’re like, ‘Oh, wow, we did that,’ that’s a great feeling. And a little bit of pain isn’t a bad thing.”

Jared Leto to Rolling Stone’s Brian Hiatt

A lot of us writers whine a lot about writing. I’m not sure why that is. Is it because we’re plumbing the deep emotional recesses in our brain? Is it because we are creating an entire pretend world? 

I used to get super cranky about this because compared to being a firefighter or an emergency dispatcher or juggling eighteen jobs as a single parent, it felt to me like everyone was a little bit whiny. 

Then I realized that It’s because being committed to something, to a craft, to something when you are never going to be perfect, where you’ll always have room to grow? It can play a bit of havoc on your emotional wellbeing. But that’s okay. It’s like Leto says, you want to commit to that impossible thing to get the payoff. You want to be all in. Not a dabbler in writing or in life. 

How to Commit

Emalie Jacobs has some nice hints on her blog about how to do that, to be committed. They are basically: 

  • Plan to write every day.
  • Stay committed. 
  • Aim for a word count.
  • Plan early. 
  • Find your people.

And all of this is so much of what the Write! Submit! Support! class that I teach at the Writing Barn is all about. 

Back to Leto. Leto doesn’t dabble. He’s a method actor, a method singer, method artist and probably a method human. He commits wholeheartedly or he doesn’t commit at all. That’s true when he’s on stage singing or when he’s on the screen acting. He becomes. 

Becomes. 

Dabbling is the opposite of commitment. It’s an exploration. That can be good. But you don’t want to get so caught up in the explorations that you never focus. 

“I don’t dabble,” he said in that Rolling Stone interview. “I dive in. 1,000 percent.” 

Writing Tip of the Pod

Don’t dabble. Commit fully to living the writing life. Don’t let other things take priority over your dreams.

Dog Tip for Life

Proofread your poop. 

Random ThoughtS

In our random thought portion of the podcast this week, we talk about:

  1. Carrie giving up dabbling
  2. Emcee duties at the MDI YWCA’s Women of Distinction event
  3. Hyphens. Semicolons. Politicians of all sides failing to have copyeditors.
  4. How do we trust reporters and politicians with big decisions when they can’t proofread things.

SHOUT OUT

The music we’ve clipped and shortened in this podcast is awesome and is made available through the Creative Commons License. Here’s a link to that and the artist’s website. Who is this artist and what is this song?  It’s “Night Owl” by Broke For Free.

WRITING NEWS

IN THE WOODS – READ AN EXCERPT, ORDER NOW!

My new book, IN THE WOODS, is out!

Gasp! 

It’s 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 order 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. 

PATREON OF AWESOME

You can get exclusive content, early podcasts, videos, art and listen (or read) never-to-be-officially published writings of Carrie on her Patreon. Levels go from $1 to $100 (That one includes writing coaching and editing for you wealthy peeps). 

Check it out here. 

WHAT IS PATREON? 

A lot of you might be new to Patreon and not get how it works. That’s totally cool. New things can be scary, but there’s a cool primer HERE that explains how it works. The short of it is this: You give Patreon your paypal or credit card # and they charge you whatever you level you choose at the end of each month. That money supports me sharing my writing and art and podcasts and weirdness with you.