Tag Archives: arthritis

Discussion #6: If We Could Tell an Author One Thing …

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For our first anniversary, we’re bringing back the discussion post format! In these posts, we ask our contributors for their thoughts on various topics. We’ll post one every Friday this month. Today, we asked:

If you could tell an author writing a character with your disability one thing–besides “do your research”–what would it be? For example: a piece of advice, a warning about a common inaccuracy or iffy plotline, etc.

Our contributors share the following:

Kody Keplinger:
I’d remind authors that blindness, like all things, is on a spectrum. Most characters depicted in fiction are completely blind – they see nothing. In reality, only 10% or so of blind individuals are completely blind. The other 90% fall on a spectrum. Depending on the disorder or trauma that caused the blindness, a person could see in a thousand different ways. So many people don’t realize this, though. I actually get accused of faking my blindness because I can read large print text on my phone. I often wonder if this is because the media only portrays complete blindness as “blind” and rarely acknowledges the other 90% who have some vision.

s.e. smith:
Something that’s really been bugging me a great deal lately is media and pop culture depictions of OCD. OCD is not about being ‘obsessively’ neat or fussy about personal appearance — it’s a very complex mental health condition that has serious ramifications and manifests totally differently in different people. I’m especially tired of the stereotype that people with OCD are super-clean (although I do keep a very tidy house).

It might help to break down what OCD is actually about — obsessive thoughts, and compulsive actions. OCD involves intrusive, traumatic, aggressive thoughts that don’t go away, and compulsive rituals that people use to manage them. Maybe for some people that’s checking the stove four times before leaving the house, or having to double and triple-check locks. But it can also involve hair pulling, or needing to reorder jars on the shelf, or being completely disrupted by environmental change. Avoid cheap shortcuts when depicting OCD, and make it a condition with actual consequences instead of the figure of fun or something quirky.

Corinne Duyvis:
I’ve spoken a lot about autism, but less so about AD(H)D. I’d love to see more accurate and varied portrayals: It’s not all about distractibility, impulsiveness and hyperactivity! Those traits may be common, but I’d like to see, for example, characters struggling with making decisions, or experiencing hyperfocus.

Lyn Miller-Lachmann:
I’d ask authors to avoid arranging scenes and entire plot lines around characters with Asperger’s who take everything literally, particularly if the author intends to use it for laughs. It feels as if you’re laughing at us and not with us. Besides, most tweens and teens with Asperger’s have learned what an idiom is and know the difference between literal and figurative meanings, even if the literal meaning conjures amusing images in our minds.

Marieke Nijkamp:
I’d love to see more spectrums, especially when it comes to daily life with a disability. For example, when it comes to my arthritis, it means I am in pain almost every day. It does not mean I’m in the exact same amount of pain every day, that the pain itself is exactly the same, or even that the pain is the worst of it.

Some days, I can barely hold a hairbrush. Other days, it’s more like an annoying ache in my bones. Some days, my painkillers are heavenly (and anyone who thinks it’s acceptable to come talk to me about how medication is poison can get out and check their privilege), other days I barely notice them. Some days, I can ignore the pain, and other days, it chips away at the very core of me because it’s so very invasive. It’s a spectrum, and no day is quite like the other.

Kayla Whaley:
In terms of my own disability (Spinal Muscular Atrophy), I’d like authors to consider the physicality of it beyond not being able to walk. Realize that neuromuscular diseases don’t affect ONLY one’s legs. My entire body is weaker than most and that affects my physicality–the way I look and move. I tend to sit leaning forward and to the right because it takes less strength for me than sitting upright. If I’m reaching for something on a table, I have to use my free arm to brace the other. When I’m moving my body (gesturing while talking, adjusting my sitting position, dancing, anything), I don’t tend to be the most graceful because it requires a decent amount of effort to do so.

I think because the only wheelchair-using characters we’re used to seeing are athletic people who have been paralyzed (not that those portrayals are necessarily accurate either), it’s easy to fall into the trap of focusing on the walking issue while ignoring the rest. (And keep in mind that this is a very, very incomplete list and focuses purely on visible physical differences between me and those who are able-bodied.)

Cece Bell:
I agree with what several of the other contributors have said: disabilities are on a spectrum. That is definitely true with deafness—there’s such a big range, and so many different ways that each deaf individual might deal with their own level of deafness. I rarely see deaf people in fiction (probably because I don’t read nearly enough), but I often see them in movies or on TV as minor characters who exist for no other reason than for comic relief. You know, the stock deaf person who shouts all the time because he can’t hear what he’s saying. That joke’s so old even my dog won’t eat it. I guess this advice is more for movie directors than authors, but there you go!

What about you, commenters? Any advice to offer?

Marieke Nijkamp: Memories of Infinity

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Marieke NijkampMarieke Nijkamp is a writer, professional dreamer, and proud-to-be geek. She holds degrees in philosophy, history, and medieval studies, and loves learning new languages. In the midnight hours of the day Marieke is a storyteller, and all her stories – ranging from MG to YA, literary to fantasy – have a sprinkling of magic to them. Find her on Twitter. She is one of the founding YA Misfits and founder of DiversifYA, an inclusive community where people share experiences, in the hope that all of us who write will realize the world is much bigger than our little patch of earth. That we are diversity, and that one day our stories will reflect that.

Well I remember every little thing as if it happened only yesterday

We danced to Meat Loaf’s Paradise by the Dashboard Light, and sung along until our throats were sore. It was the last song of the night, but we didn’t want it to end. Not yet. Not now. Just one more song. We drew out time as long as we dared, until it snapped back into place and the clock continued ticking.

It was one of two proms I had, and though I’m sure I had a fantastic time during the second one–with the friends I’d made back in the “real” world, with college acceptance sorted, with the midnight blue dress that made me feel pretty despite the fact that medication caused me to lose so much weight that strangers on the street offered to feed me–the first one sticks in my mind.

By that time, I’d been living in the youth group of a medical rehabilitation facility for almost a year. One of many children and teens who had genetic or congenital disabilities, developmental disabilities, acquired disabilities, chronic illnesses… we were a collection of all sorts. Our school was a special school.

And I’ve always wondered what it would’ve looked like to the outside world, this dance of ours. (Would we be pitied?)

*

When I first got to that facility, at fourteen, my condition was such that I spent my days bed-ridden, reading.

By the time that dance came around, I’d found my way back to school. I spent my afternoons horse riding and swimming and other things that classified as physical therapy. In fact, I went to a plethora of therapies–and hated them all. But they were an integral part of daily life. Classes were scheduled around our therapies–not too hard in a class of four.

When I left at fifteen, I was sure I’d made friends for life. Because that’s how you feel when you’re fifteen. But at the same time, we all knew better.

During that year, we lost friends. Death was a part of life too. And sometimes it felt like the ones who finished their therapies were the ones that got away. Because it’s young-adulthood compressed in a year. Safe and scary and always in transit.

But sometimes we had moments when time stopped for us. (And sometimes, we didn’t want to grow up quite yet.) That night it felt like there were dozens of us. And at the same time it felt like it was only us. (Neither was true.)

*

When I got to the facility, it seemed overwhelming and threatening. I was an Aspie living in a group home.

Long, long before the dance it felt like the safest place on earth. Because within its walls we could be ourselves. We were all different. We didn’t have an understanding of normal, because there simply wasn’t one. And yet… We complained about the food. We complained about the curfew. We had competitive, kamikaze-like wheelchair games. We pulled pranks.

To the dulcet tones of Meat Loaf, it didn’t matter if you danced on two feet, two wheels, crutches. (Who cares, anyway?)

*

When I left home, it felt like such a different world. Not one I was used to–the walls and the bed and the occasional fragments of outside. The world I was used to only existed in books. They were my escape rope and my lifeline.

And yet.

I learned only minutes after arriving at the facility–where I came home, too–what a thousand books hadn’t told me.

That we weren’t Other. That we weren’t different. But that we were there, that we were us.

And that we existed.

And in that moment, I swear we were infinite. (Thank you, Steven Chbosky.)