The Stories We Tell About Disability: A Conversation with Amanda Leduc




A FAIRY GODMOTHER helps a Disney princess with a wave of her magic wand. Pixie dust wraps around Cinderella’s rags and transforms them into a ball gown. It also raises Sleeping Beauty from her curse-induced slumber. The bursts of light that still cascade over the Disney castle logo equate a magical transformation with a happy ending.

Novelist Amanda Leduc, author of the gritty 2013 fantasy The Miracles of Ordinary Men, has now produced a book about the limits of these magical transformations, Disfigured: On Fairy Tales, Disability and Making Space (2020). In mulling her own experience of fairy stories, Leduc noticed that, while princesses are never disabled, most of their antagonists and many of the secondary figures are. Maleficent the witch is green and, after her wings are cut off, mutilated; Captain Hook in Peter Pan is named after his physical disfigurement, as is Scar in The Lion King. In every case, the differences aren’t merely physical, they symbolize major character flaws. In Disfigured, Leduc unpacks the many ingrained biases lurking in classic fairy tales while also exploring her own experience with cerebral palsy.

I recently spoke to Leduc about the power of fairy stories, as well as about disability rights and accessibility. Our conversation has been edited for clarity and brevity.

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SARA BLACK MCCULLOCH: In many popular narratives, including especially fairy tales, the disabled body is depicted negatively. What kind of unlearning did you have to do so that you could reject this construction?

AMANDA LEDUC: There is a lot of unlearning that has to happen. For me, the long and the short of it is that I had more visible markers of disability when I was younger and to a large degree the process of growing up was a real fight to get away from those markers. It’s a real feat of mental gymnastics because, even though I would tell people that I have cerebral palsy and walk with a bit of a limp, I was actively not associating myself with disability because I thought it somehow made me less of a person, less able to contribute to society, whatever that means.

It was until I moved home — I actually lived away from Hamilton for a long time — that I really started to come face to face with the realization I had been running from for most of my life. It was an unlearning that’s been happening constantly for the last five years, I would say. The first part of that unlearning had to do with the idea that the disabled body is inferior because it can’t produce as much as other bodies and is therefore not as valuable. This is a view that a lot of people subscribe to even if they would argue that they don’t. It’s what fuels the fact that disabled people get paid less than others; it’s why the able-bodied don’t necessarily fight for things like higher disability allowances or the right to fair wages for disabled people, because there’s this unspoken assumption that they can’t contribute meaningfully to society. We tie the worth of a human being to how much they can give to society.

That was the first big step for me, and to be honest, it’s still something I come up against. I’m a bit of a workaholic because there is this fear that, if I’m not working or showing myself to be working all the time, then I will just cease to exist in the minds of people. I had internalized those messages from when I was child in the schoolyard and worked them into my understanding of my body as an adult. I was told as a child, in words and gestures and the ways kids exclude and bully, that I wasn’t worth the same as other people. And that carried over into adulthood, so now I feel like I have to constantly work to prove myself or make up for my disability.

In fairy tales, there’s the notion that problems can be solved with the wave of a magic wand, but even real-life stories about disability often assume that the goal is to “get better,” to be rehabilitated or cured. I wonder if you have any thoughts about that.

When you look at the medical model versus the social model of disability, it speaks to that real desire to simplify complexities in the world. If we live in a world where there’s one ideal type of body and any body that differs from that ideal is an aberration that we must work to exclude, then that’s a very simple view of the world. It allows people not to have to deal with the complexities of figuring out how we fit all sorts of different bodies into society and how these different bodies might move through the world. In a way, you can also see that with the social model of disability where, instead of building the world around one type of body, you try and build a world that will reflect all of the different bodies. The social model is also a simplification in that there’s a problem that society must fix. And that assumes that society is responsible for mitigating all aspects of disability and that’s also not right. For someone like me, I live with chronic pain as a result of cerebral palsy, which is worse on some days and better on others. No amount of ramps or other physical accommodations are going to take away my chronic pain.

In the book, I talk about the complex embodiment theory developed by the late Tobin Siebers [a Professor of Art and Design at the University of Michigan]. That model gets more at that murky gray area where, essentially, we live in a world where people are disabled by the built environment and we need things like ramps, universal design, ASL captioning, et cetera, so that we can make the world more equitable and just for everyone. We also need to make space for the idea that disabled people are going to be in pain and some disabled people are going to wish for their disability to be taken away because of that. Saying that does not negate the importance of the social model or ensuring that the built environment is made in such a way that it accepts and makes room for all these bodies. It is, in fact, very possible for us to hold all these ideas in our heads at the same time — to really look at each individual disabled person’s experience of the world and say, “Okay, how much of this as a society can we contribute to and work toward mitigating all these factors for you?” If you’re a wheelchair user, we have a responsibility to build ramps into buildings, have accessible public transit, ensure that you make the same wage as everybody else and are given every opportunity to excel and succeed in ways that able-bodied people can. But we also need to understand that sometimes there’s going to be debilitating pain that maybe affects their ability to work or to contribute in certain ways, and that’s okay.

In the book, you revisit the letters from your doctor and reveal the ways they label and talk about your medical condition. Doctors of course require emotional distance in order to treat patients, but do you think they also operate with assumptions about the “unruly body” that can have serious effects on how patients view themselves?

Doctors have long held positions of power in society that, to a significant degree, are warranted: they go to school for a very long time and do a lot of work to become experts in their fields. But doctors also are given a narrative and promote an idea of what a healthy body is: it has a BMI of such-and-such, walks on two legs, et cetera. They assume that there is a norm and everything that deviates from it has to be corrected, moving the patient back toward that norm as much as possible.

If you blow that open and assume that, actually, there is no one way to be healthy in the world, it complicates the picture. It knocks doctors off their pedestal because it means they’re only an authority on one body type, essentially. And there’s a meme that circulates in the disability community, where a doctor says, “Don’t confuse your Google search with my six years of schooling,” and then a disabled person responds, “Well, don’t confuse your six years of medical school with my 30 years of living with this condition.” The condition will have certain markers, yes, but my experience of it is unique to me and is exacerbated by certain factors in my own life. We really need to get to a place where we can speak to one another and acknowledge that. Disabled people are experts on their own bodies and their own lives and the ways that the various medical conditions they have impact their lives. We need to push for a medical world that is more empathetic and open to these kinds of considerations. We really need to examine what constitutes a “healthy body.”

I’m interested in the field of narrative medicine and the ways that the stories we carry within ourselves have a huge impact on how we physically move through the world, the different things that happen to us as human beings. There’s a growing awareness of how these things are all interconnected — how these stories you hold as a disabled person interact with and affect how you move through society. It’s not just a physical thing that can be “fixed” by medicine or medical intervention. It’s a more holistic picture. The really fascinating thing for me in writing Disfigured was recognizing that fairy tales in some way shape and speak to that idea. It’s not just a story, because these stories really shape children and their notion of how they’re supposed to behave, to move through this world. If you move in a certain way, there will be certain rewards that you’ll reap later on. And when that doesn’t happen, that really does a number on a lot of people.

In terms of villains and how they’re depicted, in some ways you had me wondering why wouldn’t they be jaded, especially if the world is so unwelcoming to them? Why be a part of society in that way? How is it possible to not internalize that worldview?

There are a couple of steps to that. In some ways, it is society’s fault. The example I give in the Beauty and the Beast chapter is of the young man who went on a rampage in the mosque in Christchurch, New Zealand. And the narrative that people seized on was that he was bullied when he was a child and snapped as a result. And that was an interesting narrative to me, because it takes for granted the idea that “snapping” and lashing out against the world is a foregone conclusion and it connects the idea of snapping and lashing out to a person’s appearance. What we should really be talking about is what Penny Loker, whom I interviewed for that same chapter, was touching on when she said, “I’ve been living my whole life with a facial difference and I’ve never once thought of doing that.” In other words, we should not be assuming that the Christchurch shooter is what inevitably results when you bully people. We should be asking why that child was being bullied in the first place, why the child was being picked on, why children are told from a very young age that, if they look different, they’re going to be treated differently.

Disability theorist Alice Wong recently tweeted how, 30 years after the Americans with Disabilities Act was passed, discussions on disability still center on ramps and entryways. You also bring up the Fair Labor Act, which essentially makes it legal to pay disabled people less. Can you touch more on that because not enough people talk about or know about it?

The Fair Labor Act has been in place for 80 years in the United States, so this is not something new, it’s been going on for a long time. I think that part of the reason is that there’s this unspoken assumption that the bar for the disabled life is much lower. So people say, “Well, this person with Down Syndrome who has a job clearing tables at a restaurant is fulfilled because they just want to have a job and seem like they’re participating in society so that’s enough. They don’t need to make a full wage because what are they going to do with that money? Everything else is taken care of for them through benefits, et cetera.” What people don’t realize is that, in the act of saying or thinking that, you’re already putting the optimal life for that person at a much lower level.

It’s really not to the advantage of corporate, capitalist society to really engage with these ideas because then it will dismantle all sorts of social structures. Our society is built on the idea that you are born and go to school with the sole purpose of getting a career and contributing to society in a productive way. And our pay structures are built in such a way that you make more money and are assumed to be worth more in general because certain jobs contribute more to society. There is this whole conversation going on in the States about the immorality of billionaires, of anyone owning that kind of wealth, but then you see people, almost always men, who say they deserve that money because they earned it and their ideas have made society better and so on. If we stop looking at how much you contribute to society as being a marker of your worth, then what do we use as the marker? How do we structure society and how do we pay people?

I know it’s incredibly complicated. What you really see play out in disability frameworks is the reality that “hard work” for one person is going to look very different for another person. If you’re chronically ill and can only manage, say, 20 hours a week out of your house, if you can only do a part-time job because of chronic illness, our society says that you’re not working as hard as someone who puts in a 40-hour work week because you’re not producing as much. But when you look at the toll that takes on your life versus the toll a 40-hour week takes on the average person, you know what? You’re probably both the same amount of tired.

By and large, the majority of disabled people are not trying to game the system or have an unfair advantage; they’re trying to participate in society to the best of their abilities. And I just find it so fascinating that people can say they want the disabled to participate in society, but when you look at something like disability benefits in Canada, I don’t know the exact numbers offhand, but what essentially happens is disability benefits are distributed after the government calculates the minimum amount you need to survive in the world — disability benefits are essentially half that, and all the stipulations around the benefits require that you not work outside of that.

If you do freelance work, does that impact your benefits?

Yes. So I have disabled friends who are on disability assistance and they do other work, often in the media, like consulting, and a lot of them have to do that under the table so they get paid in cash because, if they make over a certain amount, then they no longer qualify for benefits. And those benefits are necessary for them to ensure that they have the help and support to get up, get dressed, showered, have transportation. All of the things we need to move through the world in a fairly normative way that we take for granted, those benefits pay for all those things. So the way benefits are set up just works to perpetuate the idea that a disabled person’s life is worth less because, look at this person living on disability assistance: they have this tiny apartment, like isn’t their life so sad? Well, what would it look like if someone lived on disability assistance and it was just understood that that is money you need but also give them the opportunity to thrive on top of that? People are so concerned with fairness and they look at someone who is disabled and working from home and they ask why the government “props up that person” by giving them “handouts.” And that help is necessary, it levels the playing field.

It’s really frustrating, and for me it comes back to that storytelling perspective. We tell stories about disability over and over again without realizing it. I have heard so many stories from disabled friends who were just in a wheelchair on the street and people were saying things like, “Oh my gosh, look at that person. If that were me, I wouldn’t be able to leave the house. Good for you for leaving the house and picking up a coffee down the street.” And people do this thinking it’s a compliment, being nice to someone for going about their life, when in actual fact, what you’re saying is: “If I had a life like that, I wouldn’t think it was worth living.” We really need to change that attitude because it comes back to, this is the particular story you want for your life, this is the particular body you want to have, and you want your life to move in a very particular trajectory. You grow up, you have a career, you meet someone and you fall in love — this very tidy arc we have that has traditionally not been achievable for people who look different and move differently through the world. It was ingrained in me as someone who, I like to think, was always open-minded and tried to be as kind as possible, yet I still internalized it! Nothing short of revolution is going to change that, but it’s a slow revolution and it can be very difficult in many ways. It just makes the work that much more important.

Have you seen any positive shifts in narratives? Would you ever write your own fairy tales?

Oh, for sure. I am working on a short story collection right now that is looking at fairy tales through that lens. I think there’s definitely more awareness now, especially in the fantasy realm, but I still think a lot of work needs to be done in terms of really putting disability front and center. A recent example I like to talk about is the Netflix series The Witcher. There was a lot about the show I did enjoy, but it features a real problematic portrayal of a disabled person — a character with significant facial and spinal abnormalities. This woman becomes a sorceress and then decides to eradicate those disabilities in the third episode, I think. And that’s the standard arc, right? Happiness will come to someone if they’re no longer disabled.

Now the show does flip the narrative because the character comes to realize that her problems haven’t gone away once she’s able-bodied, but I would love to see a story that has a disabled character at its center and everyone just accepts them, and this changes the people around them rather than expecting the disabled person to change. I want to see more stories like that: where the world is changing around the disabled person rather than that character undergoing some magic transformation so that the world is suddenly accessible to them in a way that it wasn’t before. I’m also not saying that the trope of the disabled character as villain needs to disappear because I think there’s room to understand that disabled people come in all shapes and sizes and there are some mean disabled people. We’re not all saints, like Beth in Little Women or Tiny Tim in A Christmas Carol. Disabled people have very complicated lives and deserve to have all kinds of representation. Disabled people shouldn’t be expected to be teachable moments in other people’s lives all the time.

You also touch on the disabilities that can’t be seen, as in mental health, learning disabilities, and other invisible chronic conditions. Can you talk about this more, because a lot of the resources available depend, in a way, on being able to see and document conditions?

A lot of people with invisible disabilities do encounter difficulties. Basically, this is how they move through the world: they’re faced with the choice of performing disability in a way that means they become eligible for certain access and other considerations. So let’s say you have a cognitive impairment that impacts memory and you need more time on an exam; other students might say that’s not fair, but in addition to memory problems, there could be anxiety involved and that already puts you at yet another disadvantage for writing the exam. What’s taken for granted is that the structures we’ve built put everyone on an equal footing when in fact the structures are inherently unequal and some people really struggle with them. I think that we need people to understand that the world isn’t inherently fair and just because you worked really hard doesn’t mean that somebody isn’t already working twice as hard, from an unfair position, to meet the same milestones. What you’re seeing isn’t an excessive accommodation for this person who “looks normal” — it’s actually being put in place so they can go about the day and do their jobs.

We’ve been socialized to think that disability looks a certain way. You need a visible marker like a wheelchair or a cane to set you apart from the rest of the world. People have a real problem when they see someone with invisible disabilities because they’re like, “Well, you look fine. You should be able to move about the world.” And one of the things I think about is that a person who wears glasses — that’s an invisible disability. It’s visible in the sense that you can see the glasses, but it’s invisible in the sense that society has so completely normalized the idea of mild visual impairments that can be mitigated by wearing contact lenses or glasses that we don’t even think about this as a disability. And the reason you don’t is because people have been given the space to have these mobility aids, which is essentially what they are, that allow them to go about in the world. If I didn’t have my contacts or my glasses, I wouldn’t be able to drive, which means I would need to live in the city, because I would have to be near public transit. I would need to sit in the front row of a movie theater in order to see the screen, and that would impact my experience. It would impact my work productivity (I wear my glasses at the computer). This wonderful, simple mobility aid allows me to operate in the world in a way that no one questions, but somehow we don’t see wheelchairs in the same way.

People often use Stephen Hawking as an inspirational example, a disabled person who managed to accomplish so much. What that didn’t make space for is that Hawking was able to accomplish what he did because he was given accessibility requirements and people made major changes to the built environment so he could do his work. He only spoke at events that had ramps that would allow him on the stage. He also made a reputation for himself as a scientist before the effects of ALS took hold. People don’t think about those social constraints and accommodations. They look at him and they impose a narrative of individualistic accomplishment. But in reality, the world adapted so that this person could triumph.

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Sara Black McCulloch is a researcher, translator, and writer living in Toronto. She has written for AdultThe HairpinGawkerBitchBroken PencilLittle Brother Magazine, and the National Post.

 

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