Earlier today, Jessica Walton reviewed Corinne Duyvis‘s debut Otherbound, and Ada Hoffmann reviewed her recently released novel On the Edge of Gone, both of which feature disabled protagonists; now, they sit down with Corinne to talk about disability in genre fiction, approaching and engaging with tropes, research, cats, and more.
Jessica Walton: In a few sentences, how would you describe Otherbound to someone who hasn’t heard of the book yet?
Corinne Duyvis: A boy from our world sees through the eyes of a girl from another world every time he blinks. She has no idea—until they learn to communicate for the first time, and their lives collide in disastrous ways.
Jessica: I haven’t found many YA books with amputees centred as a main character. I recognised many of Nolan’s experiences as an amputee, and felt accurately represented. How did you go about your research, and what advice do you have for other writers who want to write diverse characters outside their own experience?
Corinne: I am so delighted to hear that you recognized so much!
I went in armed with a lot of knowledge about general disability representation, much of which can be broadly applied. If you learn only about the practical life details, but not about disability stereotypes or internal experiences, you won’t get very far.
That doesn’t mean I didn’t also need to know about the practical life details and amputee-specific experiences, though. Before and during writing, I did a lot of research online. I read articles and forums about people’s own experiences, watched videos, and more. I learned an awful lot from that. With that knowledge, I started writing, occasionally pausing as certain situations cropped up to consider and research whether that might work differently for Nolan. Afterward, I got in touch with a girl who’d had her own foot amputated as a kid, just like Nolan, who was happy to double-check the results of my research and to talk to me about situations or scenes I wasn’t sure of.
Those are the three big things, IMO: (1) learn about broader representation, tropes, and politics; (2) do as much research as you can on the specific situation, focusing on hearing from people directly rather than filtered through the eyes of a doctor or relative; (3) get one or multiple consultants.
Jessica: Both main characters are diverse in more than one way. What motivated you to write a character who is disabled and bisexual, for example, and how important is it for intersections of diverse identity to be represented in YA more generally?
Corinne: These things grew pretty naturally. Amara was mute in part because I had often been frustrated at portrayals of characters who’d had their tongues cut out and who didn’t seem to develop alternative means of communicating. Often, that element is used as a plot device and nothing more. In addition, it rarely happens to the main character, but instead happens to a secondary character. It’s only used as a means of indicating how awful the antagonist is. I wanted to see what a more prominent and realistic approach might look like, both physically and socially.
Amara’s bisexuality developed naturally as I plotted the story. I did wonder whether readers might perceive it as “too much” or “unrealistic,” but I squashed that down. I’m disabled and bisexual, and there’s nothing unrealistic about me, you know? I think it’s important to show those intersections, because they’re a reality for so many people, yet they’re often scoffed at.
“Oh, she’s Asian and a lesbian? Come on.”
“What, just being Muslim wasn’t enough, he has to be in a wheelchair too? Was the author ticking boxes?”
But these people exist. It’s not about ticking boxes; it’s about showing reality. Artificially keeping characters restrained to no more than one (1) marginalized identity is a lot more forced than anything else, IMO. That springs from the perception that white, straight, abled, majority-religion, thin, et cetera, are all “default” identities and everything else is just something you tack on as an extra. But a bisexual girl isn’t a straight girl you modify into something else; she’s a bisexual girl, period, end of story.
I am not a deviation from the norm. I am the norm in my own life.
Jessica: You started the hashtag #ownvoices which has really taken off on social media. Can you tell us a bit about why you started it, and what it’s doing for diverse authors of diverse characters?
Corinne: I love the movement for more diverse books, but it was frustrating to see people occasionally shove aside the need for more diverse authors. If you only show marginalized experiences as filtered through the eyes of people who aren’t marginalized themselves, you end up with a skewed perspective, no matter how well-intentioned the authors are or how much research they do. One important aspect of not only improving the amount of representation, but also the quality of representation, is simply listening to the people whose experiences are depicted.
It’s not about demanding marginalized authors write solely about their own identities.
It’s not about demanding that authors, marginalized or otherwise, don’t write outside of their identities.
It’s about looking at the diverse books we have or are calling for, and consciously prioritizing those from authors who can speak from their own experiences.
It’s about giving marginalized writers the opportunity to write about whatever the heck they want to write. Marginalized authors need to have the same opportunities, the same support, and the same freedom as everyone else; we can’t demand diversity if it’s only on certain terms. We have to pass around the microphone and de-center ourselves.
It’s about all that … and just about finding damn good books that aren’t getting the attention they deserve.
Jessica: In Otherbound, Nolan is pulled into someone else’s body, in a magical world, every time he closes his eyes. His unusual behaviour and frequent “seizures” lead to a diagnosis of a rare type of photosensitive epilepsy that triggers absence seizures on blinking. The seizures don’t respond to medication and the symptoms don’t totally add up, but it’s an explanation that his doctors and parents can accept and try to deal with. I thought this was a fascinating part of Otherbound, and it’s fairly unusual from a disability perspective. How did you approach this?
Corinne: With a lot of brainstorming, ha!
I didn’t go into the book thinking Nolan would be wrongly diagnosed with epilepsy. Instead, I looked at his situation—he’s drawn away with every blink, feels Amara’s pain, et cetera—and tried to see what, realistically, he’d be dealing with. He would be distracted all the time, and have zero focus. He would miss information. He would have a bizarre sleep schedule. He would’ve talked about what he saw in Amara’s world as a kid, before he realized he was better off keeping it to himself. He would experience sudden pain—lots of it—on a regular basis.
I planned to have all of those as separate behaviors of his, and just have him perceived as “that weird sickly kid who deals with headaches and has zero ability to concentrate.” Eventually, though, I wondered: if Amara is undergoing hellish pains in her world, what is happening to Nolan? From one moment to the next, he would be thrashing and flailing. What would that look like? His parents would’ve sought out medical attention for sure. Looking at some of the side effects of his unfortunate magical situation, his behavior sorta-kinda fit into a possible diagnosis of epilepsy.
It can be justified if you squint your eyes. Absence seizures do exist. Brief one-second seizures exist. Photosensitive epilepsy exists. People having hundreds of seizures daily exist. Seizures with hallucinations exist. And, yes, after hours of digging, I also found a case of someone having seizures on blinking, and a case of someone whose hallucinations seemed to be connected, like a story that was playing itself out.
Even so, the odds of all of that happening in the same person are really slim, and as you say, the symptoms still don’t totally add up. He doesn’t respond to medication; the EEGs are not what doctors would expect, either; and when he’s thrashing from pain, he’s fully aware and awake, whereas you’re not typically conscious during the kind of tonic-clonic seizure associated with that kind of behavior. Nolan knows he doesn’t have epilepsy or seizures, and I tried to make that clear very early on in the book, as well as throughout. But yeah; Nolan’s situation is bizarre, and “weird unusual presentation of epilepsy” was the only thing that could sort of explain it, in-world.
One reason for making clear it’s not epilepsy/seizures was because I wanted to avoid the magical disability trope. It’s not like he has epilepsy and those episodes transport him to Amara’s world. It’s not even like he’s transported to Amara’s world and that causes him to have seizures. It’s purely people slapping an ill-fitting label on him based on external behavior. Misdiagnosis happens all the time, and a boy in Nolan’s situation wouldn’t be able to escape medical attention.
Pretty much, I tried to do what we also talked about in the magical disability chat yesterday:
- make it clear that his symptoms are purely logical consequences of a magical situation, not genuine epilepsy or seizures, so that there’s no direct connection between disability and magic;
- still treat his unusual situation (which has absolute disability parallels) with the respect and care it deserved, in terms of his emotional experiences, how people react to him, and the practical details;
- thoroughly research the care and medication he would receive and the precautions he would be expected to take—and afterward letting a friend with epilepsy read the manuscript to make corrections;
- include other disabled characters, including Nolan himself;
- never lead (disabled) readers to think that he genuinely had epilepsy, whether in-book or elsewhere.
I felt like that went a long way to nixing the trope, and in particular the trope’s unfortunate implications and consequences.
What is still possibly trope-y is the new medication he’s on, which Nolan realizes early on allows him to affect Amara’s world. It’s a total plot device. Magical epilepsy meds. I wondered about this a lot, too. I decided it made sense within the confines of the story: after all, medication is typically used for more than one condition. My antidepressants are also used for concentration issues and quitting smoking. Varying anticonvulsant medications (there are a lot) can be used both to prevent seizures and to treat conditions like anxiety, neuropathic pain, bipolar disorder, alcohol withdrawal, insomnia, and more. There’s tons of other examples. Anticonvulsants don’t just reach into the brain and hit the seizure off-switch; they affect the brain and body in all kinds of ways, resulting in many seemingly bizarre side effects. I figured, well, if the brain is affected, and the magic affects Nolan’s brain—which it does, hence the bizarre EEGs—it wouldn’t be a stretch to think that one of the various medications he’s tried over his lifetime could eventually influence the magic.
(A sixth thing I did to nix the trope was to introduce other characters with the same magic as Nolan, but who don’t have the epilepsy diagnosis. And regarding the medication … Nolan’s magic is broken, in a way. It’s overactive, oversensitive, propelling him into Amara’s world way too easily. Anticonvulsants often act as a depressant, suppressing the rapid firing of neurons. The medication allows his brain to kind of return to a more baseline state, which lets him use his abilities like the other travelers in the book do.)
All that said? I do think I would approach both the “epilepsy” and the medication differently were I to write the book now. Even if it makes sense within the confines of the story and avoids tropes, the book still uses both an epilepsy diagnosis and anticonvulsant medication as plot elements without featuring a single character who actually has epilepsy.
Wow, sorry! I went on for a really long time there. I thought a lot about these elements while writing the book and apparently I get a little too excited when I’m asked to talk about them, haha!
Ada Hoffmann: What inspired you to write On the Edge of Gone?
Corinne: Lots of different things—I’d wanted to write a post-apocalyptic story that dealt with how disabled people are approached in these genres, and I’d wanted to write an autistic protagonist, and I suddenly had the plot bunny of writing about a generation ship before it actually left the planet, to see what the process of boarding and preparing would look like. All of those kind of merged together to form this book.
On the Edge of Gone changed pretty radically from its first spark to its final incarnation; it went from fantasy to hi-tech sci-fi to more grounded, modern-day sci-fi. I like how it ended up, though. I feel like the realism contributes a lot to the book, and as much as I like playing with cool sci-fi ideas, in this case they would’ve probably distracted from what I was trying to do with the story.
Ada: There’s a lot in On the Edge of Gone about the dynamics of survival situations, not only about who is and isn’t judged worthy of resources, but also about how the assumptions behind these situations are constructed, how even good people get so fixated on protecting themselves and their families that they fail to see alternative ways of helping everyone. Can you say more about that? Where do you see these dynamics being played out in real life right now?
Corinne: I feel it is a very natural, human thing to want to protect yourself and your family. Particularly when you’re talking life-or-death situations like in On the Edge of Gone! There’s nothing wrong with that.
But sometimes it grows into something else entirely. When people start seeing each other as competitors, things get ugly, and people switch to that worldview disturbingly fast. “We have to protect our own” can even lead to wars, when often it’s simply people in charge looking to lift themselves up and blame others for their problems. Creating fear, the illusion of scarcity and competition, works precisely because it preys on that natural instinct to protect one’s own.
It frightens me that this is the status quo.
You can see it in the assumption that (post-)apocalyptic novels absolutely must be violent and dark and show the worst of humanity, “because that’s just what people are like,” instead of it being simply one option out of several.
You can see it in the kneejerk “what about me?” response of privileged people when marginalized people ask for equal treatment.
You can see it in cuts to welfare and tightened immigration policies, when people panic over a perceived shortness in supplies or land and leave the poor and the disabled and the foreign out in the cold to protect their own interests.
Sometimes, I just want to scream, Calm down, people. I mean, the world is pretty bad and the sky probably is falling, but I’m pretty sure the most vulnerable portions of our society aren’t to blame for that, y’know? In fact, they’re going to be the ones who suffer most, and turning on them will only exacerbate that. We don’t need to assume the worst. We don’t need to grab a baseball bat and declare “every man for himself!” at the first sign of trouble.
Idealistic as it sounds, I think we can protect our families and our communities both.
Like I said on the Guardian site the other week—if cavemen and animals can look after each other even when they don’t have anything to gain from it, we can, too.
Ada: Do you love cats as much as Denise in real life?
Corinne: Here’s a picture I took while working on this interview.
Even if I hadn’t already loved cats my entire life (spoiler: I have) the cuteness in that picture would be enough to convert me, I’m pretty sure.
Ada: I appreciated Denise’s “voice” and the way she describes what life is like for her without being cutesy or stereotyped. How did you work on finding a voice for Denise—or did it just come naturally?
Corinne: It came surprisingly naturally. I had parts of her character hashed out before I started writing, but she immediately sprang to life when I actually put words on the page.
There were points where I had to go back and tweak elements of her voice, but that’s the case for all characters I write. What did surprise me about writing Denise is how often I found myself slipping into common, superficial descriptions of autistic habits. Even being autistic myself, it’s hard to get rid of the influence of all those stories I’ve heard my whole life. So sometimes I would need to step back and think of a different way to describe Denise’s actions or thoughts; other times, I needed to dig in deeper and explain precisely why she’s doing something, her feelings and intentions, as that’s often the part that’s missing from shallow portrayals. I wanted to draw people into her head, have her make sense, instead of gawking at her from a distance.
And I’m really, really glad to hear from other autistic people that I succeeded.
Ada: What one thing do you wish more writers understood about autism?
Corinne: We can learn and develop. I don’t mean we can “get better” or “less autistic,” but I do mean that many of us are pretty good about following and internalizing rules. Even if an autistic person might not understand why XYZ social habit is rude, many will still learn not to do it as long as people take the time to fully explain it to them and discuss alternative actions.
In other words: the behaviors and mistakes of autistic people as young children do not necessarily carry over into adolescence or adulthood.
That’s not to say they never do, either. There are no absolutes in autism (just like in most conditions). It will depend on the situation and character. But I’d be pretty happy if more people paused to consider what skills or knowledge their character may have gained over the years, and what new challenges may have cropped up. Autistic teenagers typically have very different experiences from autistic people at other ages—just like non-autistic people.
Also, everything Elizabeth said in her article about autistic “behaviors,” which I think is absolutely spectacular.
Jessica: What’s next for you?
Corinne: I’m working on several different books—it’s still a toss-up as to which one will actually be published next. I’ve got a YA that plays with the Chosen One trope, a fun action-y sci-fi MG, and way more in the works. I’m pretty excited about them, so I hope I’ll have news to share before too long!