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

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?

Kayla Whaley: Being a Poster Child

Kayla WhaleyKayla Whaley has a BA in political science and is currently finishing her Master’s in Public Administration with an emphasis in nonprofit management. She interns for both the Atlanta Young Writer’s Institute and Entangled Publishing. Her bookshelves consist almost entirely of kidlit and she writes YA fantasy and contemporary.

She’s previously written about her disability at DiversifYA.

I was an adorable child. Straight up, I was SUPER cute. Here’s me (on the right, my sister’s on the left) when I was around four:

Kayla Whaley & sister

Right?! I was also articulate, intelligent, sociable, personable.

In other words, I was the perfect poster child.

A poster child, to me, is a child with a disability who is “shown off” as a way to generate funds, awareness, understanding, more funds. Mostly funds, in my experience. As the name would imply, one way to do this is to put the child’s face on a poster, but it’s certainly not the only way.

I want to be clear: I loved being a poster child (though I didn’t know the term at the time). Loved it wholeheartedly.

You might be familiar with the Jerry Lewis Labor Day MDA Telethon. If not, every year on Labor Day weekend, Jerry Lewis hosts a telethon to help fund the Muscular Dystrophy Association, which is the largest nonprofit in America dealing specifically with Muscular Dystrophy (MD). (My disease, Spinal Muscular Atrophy Type III or SMA, falls under the massive umbrella that is MD.) There’s a national broadcast that features tons of star-studded performances, massive checks being delivered, etc. There are also cutaways to local broadcasts throughout.

One of the first years after we moved to Atlanta, I was invited to be interviewed for the Atlanta Telethon broadcast. It was a big deal. My whole family stayed at the downtown Hilton where they filmed and I got to hang out with a bunch of my friends with MD. Of course, being six or seven, I was mostly thrilled I was going to be on TV. The interview itself was fairly short – less than five minutes – and straightforward. They asked about my favorite class in school, my hobbies, my family. They asked what I’d like to say to those watching at home. What their donation could do to improve my life.

I’ll never forget that immediately after, the hundreds of phones in the room all started ringing. I swear, it sounded like every single one, and I knew all those people were all calling because of me. The interviewer, a local news anchor, even told me they hadn’t rung that much the whole weekend.

After that interview, I did several more “poster child” events. I went to a kick-a-thons at karate schools. I went to jump-a-thons at preschools. (It did occur to me even at the time that it was strange to be watching all these kids do something I couldn’t and it was meant to benefit me.) I was interviewed again, for several years in a row, on the Telethon.

I loved it. I felt important. I felt liked. I always liked being the center of attention, and how much more central can a kid get than being on local public broadcasting?

I didn’t actually do as much promotion as a lot of my friends. Several of them were chosen to be ambassadors for the state of Georgia. One is picked each year, and they travel all around the state doing those same kinds of events. I was happy for them, sure, but I was also SO jealous of them. (I’m pretty sure my mom told them not to pick me; we wouldn’t have had anywhere near the money or time to do it anyway.) I thought, “I’m better at this than they are. I’m funny and people like me and I’m so cute.”

Eventually, around late middle school, they stopped inviting me to “whatever-a-thons”. They stopped asking me to interview on the Telethon. It made sense. I wasn’t an adorable kid anymore. I was an awkward teenager. The money’s in the little kids.

I was a little hurt, but I wasn’t that upset. I understood. And besides, I wanted MDA to get as much money as they could, with or without me.

I want to be clear again: MDA does, I think, a lot of good work. They help provide flu shots, wheelchairs, other assistive tech, research, etc. The thing they did that most affected me directly, though, was hosting an annual MD summer camp. Camp deserves a whole post of its own, but suffice it to say that that one week each summer was always, always, the best week of my year.

So I wanted them to get money. And I wanted to help when I could, and stop when I couldn’t.

It wasn’t until probably college that I figured out there were really problematic aspects to the concept of “poster children”. The concept feels very similar to inspiration porn to me (see last week’s excellent discussion post on that topic), only instead of some fictional character, I’m the one starring.

(Oh man, I’m a porn star. NOBODY TELL MY MOTHER.)

As a poster child, your worth is in your disability. You’re there to inspire the able-bodied audience. To inspire pity, sadness, fear, guilt, etc. You’re the poor, poor cripple whose life would be that much more horrible without their monetary contribution.

I feel like there should be a moral here. That using “poster children” is wrong. And it is. It’s icky and condescending and othering and dangerous, just like inspiration porn is. But I almost don’t feel qualified to make that judgment because I still look back on my own experiences fondly.

And yet I know the things I enjoyed were largely lies. I wasn’t important – my disability was. People didn’t like me – they pitied me. I wasn’t the center of attention – my chair was. It wasn’t really about my benefit (though I did benefit in some ways) – it was about benefitting the organization.

I have a Master’s in nonprofit management now, so I understand even better the financial incentive behind using poster children. But I also now understand that it is WRONG.

Surely, surely, there’s a way children with disabilities who want to be involved can actually be involved, not used. That they as whole humans can contribute to organizations they believe in, not be commodified and sold to the able-bodied.

I think the answer here is simple, as it tends to be. It all boils down to treating with children with disabilities as whole people with dignity, agency, faults, etc.

Simple, and yet, so rarely done.

Kayla Whaley: Disability, Self Esteem, and Sex

Kayla WhaleyKayla Whaley has a BA in political science and is currently finishing her Master’s in Public Administration with an emphasis in nonprofit management. She interns for both the Atlanta Young Writer’s Institute and Entangled Publishing. Her bookshelves consist almost entirely of kidlit and she writes YA fantasy and contemporary.

This post has been hard for me to write. A lot harder than I expected it to be. I’m not sure why. It might be because I’ve never shared something quite so personal online. Or maybe I was worried no one would care. Or that I would write it poorly. Or some tangled combination of the above. Regardless, I desperately wanted to write this post. It felt important. And once I started actually writing, it was freeing.

(What I’m really saying is it would be accurate to picture me blushing all the way to my fingernails and giggling every time I mention masturbation. SPOILER ALERT.)

So, when I was two I was diagnosed with Spinal Muscular Atrophy Type III (a form of Muscular Dystrophy). That same year I was given my first power wheelchair and I’ve used it ever since. I’ve been in it full-time since I stopped walking at six. I’ve literally used a wheelchair longer than I can remember.

A few years after that in elementary school, I’d spend every summer afternoon with my nana. We’d eat sourdough bread and chunks of cheddar cheese for lunch, then watch The Young and the Restless together. This is how I know it was in elementary school I first masturbated with intent (not just rubbing up against pillows like, “huh, that’s fun”, which I also definitely did), because my first fantasy was an extended sex scene from the show.

I’m telling you this for two reasons: 1) I think it’s hilarious that I was writing erotic Y&R fanfic in my head when I was eight or nine and 2) I’ve had some sense of my sexuality for a long time.

That early experience of “sexual awakening” or whatever was pleasant and only a little confusing. I didn’t think much about it. I didn’t even know what sex was, not really. Once at recess, some classmates asked if I did. I, being the know-it-all I am was, said, “Yeah, of course.” They pressed for a definition. So I made an educated guess: “It’s when two people are naked and they kiss.”

As I got older I gathered that “touching myself” was shameful and I became ashamed. I realize that’s not a unique occurrence. Masturbation (and sexuality in general), particularly for girls, is widely stigmatized. But on top of that stigma, I had this body that was utterly different from the bodies around me. It was different and therefore wrong. As early as middle school I’d figured out that my body was worth less than others’. It felt like more than that though.

My body felt wholly worthless.

Even when I’d look in the mirror and think I looked passable, or even good. Even at prom, when I thought I looked gorgeous (not a word I used lightly with myself), it was hard to imagine anyone else would think so. It was impossible to imagine anyone finding me desirable. Impossible to imagine anyone looking at me and being physically attracted to me.

It didn’t help that no one (that I know of) did.

At the same time, I still fantasized and had fun on my own (though that got more logistically difficult as I got older and my range of motion decreased). Of course, I still felt massively ashamed about it, which sucked. I remember watching some show where the character started hearing peoples’ thoughts. I went, “That would be AWFUL. What if someone heard me thinking about sex?” It’s a silly example but I was truly terrified someone was going to figure me out, somehow. Since no one else expected me to be sexual, to have sexual desires, to act in a sexual way, when I did I felt like a fraud. Like I was a deluded kid playing at something explicitly not meant for me.

It wasn’t until late in college that things started to change. But I have to share two specific experiences to show you how that change began. It’s one of those “gets worse before it gets better” deals.

My freshman year, I fell pretty quickly for one of my best friends. I knew he didn’t like me, but I couldn’t help hoping. This was college after all. Anything could happen! (Cue Ellie Goulding). I mean, all those late nights/early mornings in his room, drinking root beer, playing Mortal Kombat. Maybe miracles did happen, right?

One night, a group of us had gone dancing. After, he complained the night wasn’t as fun as it could have been. I asked why.

“The ratio was off,” he said. The other guys in the group all nodded. “Four guys and three girls. The ratio wasn’t balanced.”

I was a political science major, sure, but I could count to four. And there were definitely four girls.

“Yeah,” he said, when I noted this, “but you don’t count.”

It was the first time anyone had ever voiced what I’d always known and tried to ignore: I didn’t count. Not as a potential partner. Not as a woman. My body was worthless. Something I’d always believed spoken aloud by the boy I was falling for. I’d like to say that I got mad, pissed even, that I called him on his bullshit and demanded the respect I deserved. I didn’t. I let that insidious lie (you’re worthless) bury even deeper into me.

My sophomore year, I met another boy. We too became fast friends, though I didn’t crush on him. Until one day he said, “You know, Kayla, if you weren’t in a chair, I’d totally date you.”

Do you want to know how fucked up my body image was? How completely I’d let society define me and devalue me based on their how they viewed my body?

I said, “That’s the nicest thing anyone’s ever said to me.”

Yeah. That happened. Definitely not my proudest moment.

There wasn’t a specific moment when I decided to screw society. When I decided it was okay to love my body. When I decided it was important to love my body. I’m still working on accepting that someone else someday will love my body too, you know, in a sexual way. Somehow, though, over the couple of years following that awful low point, I changed. I worked deliberately at digging all the traces of that lie (you’re worthless) out of me.

(And my sex life got exponentially better once I bought a vibrator. Eliminated many of those pesky logistical problems. Yay for technology!)

Now, I’m 23. I’m still a virgin. I’ve still never been kissed. I still haven’t met anyone who’s interested in me romantically/physically. But it doesn’t matter quite as much anymore. I’ve come to accept my sexuality as a legitimate, important part of my life regardless of what others expect. Maybe even especially because of what others expect (call it my rebellious streak).

I love my body. It’s not an infallible love yet, but it’s growing and it’s not contingent on anyone else. Perhaps most importantly, though, I’ve learned that I’m worthy, not in spite of my chair or of my body, but including them.

The whole of me is worthy.