stigma

No More Hiding Who We Are

Having a kid who isn’t doing well

Shaun and the kiddo a couple of years ago

This week the psychologist for the school system looked at my spouse (Shaun) and me across the island in our kitchen and said, “You two are really very grounded.”

He is lovely and kind.

But as we’ve dealt with crisis after crisis with our kiddo, I’ve noticed how other people are surprised when they come into our house to talk to our thirteen-year-old. They say things like, “Oh, it’s so peaceful here.”

“Your house is so clean.”

“You have such a lovely, quirky decorating style.”

“You both are so . . . responsive.”

“ . . . intelligent.”

“ . . . kind.”

“ . . . receptive.”

“ . . . caring.”

“ . . . well-balanced.”

“ . . . supportive . . . together.”

The kindness is wonderful, obviously. But it’s really got me thinking about the surprise in people’s voices when they give these compliments. All these people have been lovely, but what they’ve taught me these past few weeks is that when you have a child who is having a significantly hard time either mentally or developmentally, people seem to expect you to be that way as well.

One of the reasons I’m writing about this is that I don’t talk a lot about our kiddo. There are a lot of reasons for that.

Reason 1

When their adopted mother (I am just the bonus mom married to the adopted dad, complicated, I know) was still parenting all the time, she really didn’t like it when I even posted a photo of our kiddo with a friend’s child. It made her sad. But we’ve had this kiddo for two years now and I’m done with worrying about what someone who rarely sees their child thinks.

So that isn’t what is holding me back any longer.

Reason 2

I was thinking that I wanted to protect the kiddo’s privacy, but I never did that with my older biological daughter as she was growing up.

So why would I be protecting this kiddo’s privacy.

I think it’s not because of internet bad guys.

I think that it would be because of stigma. And you know what? I’m done with stigma.

It’s okay to have a kid who breaks your heart and that you worry for, and who you want to magically be able to control their temper and make the right decisions and be able to socialize in a way that they themselves want to.

We have a kid like this.

We don’t hide it in real life. We don’t need to hide it online either. Our kid knows that they are getting special programs (or were) and a different educational experience.

The Other Side Of Not Hiding

But it’s preconceived notions of us as parents, even by professionals, that is the real reason we’re going to be super open about this part of our journey and other parts, too.

Having a child in crisis doesn’t make us any less who we were as people before. It doesn’t make us unclean, ungrounded, unintelligent, uncaring, or unbalanced. It gives us stress as we navigate the systems trying to find the best help and options for that child, but it doesn’t change who we inherently are or how we inherently love.

As Yin Paradies, João Luiz Bastos and Naomi Priest write in “Prejudice, Stigma, Bias, Discrimination, and Health from Part III – Prejudice Reduction and Analysis in Applied Contexts,”

Prejudice, stigma, bias, and discrimination are all expressions of oppression, “a concept that describes a relationship between groups or categories of people in which a dominant group benefits from the systematic abuse, exploitation, and injustice directed toward a subordinate group” (Johnson, 2000, p. 293).

It’s stigma that makes all the people who have come into our home this last month be surprised. It’s stigma that makes us think we have to protect or hide things about our selves or our lives when they don’t mesh with society’s typical standards.

Stigma leads to bias. It leads to preconceived notions. It leads to not understanding each other.

People have always asked me why I am so open about things, why I always want town and nonprofit boards, town councils, other people to feel open too when they’re ready. It’s because this. I don’t think there is anything to hide.

Hiding makes you feel shame.

Hiding also makes you lie. Sometimes. Sometimes a lot. I’ve watched that destroy people.

Lying often makes you anxious. Anxiety holds you back.

All of that sucks.

I’ve never hidden tons of things about myself, which doesn’t mean that I talk about them constantly or even often, and that’s because I don’t want to have those things become all that I am. Because I’m a lot more than being a person who has survived a lot of things, a person with sloshy s’s, with epilepsy, with history, with a bonus kid who needs so much help. And so are you. So are all of us.

When our kid was upset the other day because of a terrible thing they’d said to their principal about their teachers—a thing that will have huge repercussions—they slumped on their bed and tears formed. For our kid? Tears are a big deal and rare.

We’d already talked about choice and responsibility. We’d already talked about how once you say or do things, you can’t always take them back, especially if that talk or act is violent. We talked about what happens when you say or do violent things. We talk about this all the time. All. The. Time.

But this day, it was almost like they’d got it and they said, “I hate who I am. There is nothing good in me.”

And I listed all the things that were good. How they loved and were so protective of their internet friends. How they could create entire AUs and make people laugh with their droll humor. How they took good care of their cats. How they were amazing at digital art and making animations, and getting better at it all the time.

It might not be enough that practical list, and it might not be enough for you or me or any of us sometimes, but it’s what you have to hang on to when you’re facing stigma and crisis and self-doubt. You have to remember to try to live the truth of who you are.

Hiding?

It only brings us down.

Shaun and I are starting this Substack called LIVING HAPPY and we’re going to be open and say to hell with stigma. This is who we are. This is what we’re dealing with. This is how we’re still happy.

We’ll have another one for writing tips pretty soon.

And there will be free and $5 a month options. It is basically a newsletter that is helpful and honest and true. It’ll be pretty damn personal and pretty damn real.

There will be posts once or twice a week. Some free. Some only for subscribers.

I hope you’ll come hang out with us there. I hope you’ll be on our living happy journey with us, too, despite everything.

No.

Because of everything.

Writing simple can be complex

So lately I’ve been thinking (Amazing! I know!) about what it is to be an individual, and how as writers we can create individuals who mirror real life truths on our page.

“An individual is someone who cannot be neatly classified or categorized because he or she cannot be easily dissected or analyzed, divided into definable parts. The individual is, first and foremost, a being-unto-itself, a unique whole
Kevin L Stoehr, “You Who Philosophize Dylan”

The problem is that people are hopefully complex, yet often in writing there’s this overall simplification of story and character that does not mimic that complexity. It seems like corporate media America has decided that people want simple things, which is fine, as long as there are also complex things to balance out literature, particularly children’s literature. And we all buy into it.

M. T. Anderson talks about something pretty similar in an interview with Joel Shoemaker in VOYA back in 1999.

But maybe that drive towards the simple is something that we should make little rebellions against. Maybe instead of following the grade-school description of what a story and genre should be, we should be fiddling around with that description.

Maybe instead of simplifying our characters we could expand them, make them more complex than hairstyles and clothing choices, than ‘good girl,’ ‘good boy,’ ‘bad child.’ And I’m not talking about giving the evil villain one redeeming quality, I’m talking about giving the evil villain a complex identity.

Making Things Predictable

When my daughter Em turned 13, she had one major gripe with the books she read. She said that most plots are too predictable. She said that most characters just have one defining trait, and well, that bored her.

I’m just worrying that maybe we should be putting some emphasis back on complex stories and characters for the big-time readers who are losing their faith in books. I’m not saying to rid ourselves of the simple stories, I’m just saying we should embrace the complex, too.

I guess, I’m just worried that in our surge to make lots of money by reaching massive audiences we are making out stories too simple, our genre choices too straight forward.

And we fall into traps because we’re so afraid nobody will buy or understand our books. We don’t want to scare off readers with something difficult to read. We want to keep things straight and common, no eccentric teachers, no bizarre-o main characters. We make sure the character always has a clear want and they go after it. We make sure the main character isn’t too complicated. Some of us follow formulas and plotting rules, and that’s okay. It’s not bad. I just don’t want it to be the only way. And I don’t want the authors who brave themselves up enough to deviate to be blasted.

Someone asked me why I made Belle have seizures in TIPS ON HAVING A GAY (ex) BOYFRIEND and not have those seizures be an active part of her character development. Okay, first off, I did it because that’s how Belle is. Her epilepsy isn’t about her character any more than having thick hair is about her character. It doesn’t have to be.

It’s only by treating epilepsy as a condition rather than a defining character trait that we can:

lessen the stigma of epilepsy
create a character who is an individual

And obviously this doesn’t just apply to epilepsy. It applies to every condition and physical trait that can cause stigma. But we can’t do this is we make our characters too simple, too one dimensional. It’s only when we make complex INDIVIDUALS that we can really battle stigma and stereotyping and all those things that we don’t want to perpetuate.

So what I want to know is what happens if we keep making narrative more and more simple. What happens to our minds? What happens to our books? Do we become numb? Do we look sideways at books that aren’t simple? Do we become so used to simple that we start believing it’s complex? And has that already happened? I hope not. I really, really hope not.

Writing simple can be complex

But there’s another side to things. By making the choice to have a character have hobbies that aren’t necessary to the plot, to quote philosophers occasionally in a romance/horror novel? By making a science fiction origin story, clean and easy to read and focusing on a girl? To make a character have epilepsy but not be defined by it? Those are simple writing choices that can have complex ripples.

Don’t be afraid of the ripples.

Things Referenced

^{Joel Shoemaker, “Hungry . . . for M.T. Anderson: An Interview with M.T. Anderson,” VOYA 27, 2 (June 2004) 98-102.}

“Bob Dylan and Philosphy.” Edited by Peter Vernezze and Car J. Porter. Chicago: Open Court Press, 2006 182-193.

PODCAST

To follow that up, I give you a podcast that talks about writing and poop texts.

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?

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.

Three Ways To Create Characters W/ Epilepsy and Not Make Them Stereotypes

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 only her race or only 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.

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

She threw in the laundry.

-Common epilepsy joke on the Internet

Lovely, right? Dehumanizing. Who cares if the patient drowns. The laundry is more important.

Me being more than someone with epilepsy

Don’t Let One Attribute Define an Entire Character

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 only her race or only 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 have epilepsy 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.”

29914_900 — Me. The person they call freak.

2. Be Aware of the Stereotypes

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.

73883_900 — Em hugging a dog. She does that well.

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.

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)

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:

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

13501976_10154349897204073_460166726311376845_n — Me hiding behind a gnome.

3. Do Whatever You Can To Understand Epilepsy

If you are writing about an experience outside of yourself and that experience is often used to ‘other’ people in a really bad way, you need to put in the work so that you don’t reduce your characters, so you can get your head into a space that is close to empathy and understanding.

What’s it like having seizures? It’s not really like anything for me. It just is. But my experience with epilepsy isn’t everyone’s experience with epilepsy and that’s important to remember. There’s no one way to have epilepsy or autism or diabetes or anything. There is no one way to be.

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.”

That’s so important. It’s something we’re still learning in so many ways. All of us.

Sources:

Barnes, Colin. “Disabling imagery and the media.” <www.ncpedp.org/comm/commresrch.htm>. January 17, 2006

Biklen, D. and R. Bogdan. “Media portrayals of disabled people: a study in stereotypes.” Interracial Books for Children Bulletin. 8: 1977, 4-9.

Carlisle, Maeleah. “Portrayal of People with Disabilities in Children’s Literature; 1940s to 1980s.” Beta Phi Mu — Chi Chapter. 1997. Indiana State University. 24 Jan. 2006 1987

Fernandes, Paula. “Stigma Scale of Epilepsy:Conceptual Issues.” Journal of Epilepsy and Clinical Neurophysiology 3 Dec 2004. 21 Jan 2006 <http://www.epilepsia.org.br/epi2002/JEp213-218.pdf.

Jacoby, Ann. “Public Knowledge, Private Grief: A Study of Public Attitudes to Epilepsy in the United Kingdom and Implications for Stigma.” Epilepsia Nov 2004. 21 Jan 2006 <http://www.epilepsia.org.br/epi2002/JEp21http://www.blackwell-synergy.com/doi/full/10.1111/j.

Martin, Jenna. “Teens with Epilepsy: Living with Stigma.” Epilepsy.com. Epilepsy Therapy Development Project.. 20 Jan. 2006 <http://www.epilepsy.com/articles/ar_1089388403.html>.

Mellon, C.A. “Evaluating the portrayal of disabled characters in juvenile fiction.” Journal of Youth Services in Libraries. 2(2): 1989, 143-150

Writing Prompt:

What is it about you that you don’t feel like people don’t understand? That they make into a stereotype?

Life Prompt:

How can you show someone that you see them? What can you do to see them better?

Random Other Writing and Work News:

The pub date for THINGS WE HAVEN’T SAID, is March? You can preorder it here or anywhere. It’s an anthology that I have a piece in.

I’m starting a podcast. The landing page will be here and also on my website and in all those typical podcast places, hopefully. It will be raw. It will be quirky because seriously… look at me… I don’t know how to be normal.

I am incredibly terrified about this podcast. So, please leave a review once you check it out.

Also, on my website are the stories of how my books like the NEED series or TIME STOPPERS came into being, how I paint to get more into my stories, or more info about me and all that stuff that’s supposed to be on websites.

My nonfiction picture book about Moe Berg, the pro ball player who was a spy, is still coming out March 1 and I’m super psyched about it. You can preorder it.

And there you go, Friday’s blog post. Please let me know here if you can (and not just on Facebook) if you’ve checked it out. I hope you have an amazing, wonderful weekend where you shout out who you are to the world and the world loves you for it.

Tag: stigma