Disfigured (Exploded Views)

by Amanda Leduc

[nannah]

(1.5)

I’m going to be very honest … I’ve never been so frustrated at a book before. I had maybe thirty pages of notes when I finished reading! I feel bad, because as someone who’s disabled and crippled myself (someone with mobility problems), I really wanted to love this book and support the author.

Content warnings:
- ableism and ableist slurs
- nazi mention
- suicide

Okay, so again, I’m crippled, multiply disabled, and have a few mental health issues (one of them being depression, like the author). The most frustrating and troublesome symptom for me, though, is pain, which will become relevant later in the review. I wanted to get this out of the way first, so it’s more clear where I’m coming from.

I was so, so excited to read this book. Just reading the printed quotes after the dedication made me teary eyed. But then Leduc says in the intro that the book isn’t a work of fairy tale scholarship, and it also isn’t meant to be a work of disability scholarship. But then what is it? Isn’t that what it’s advertised to be? After finishing the book, it’s only slightly clearer. It’s divided into different parts, some with different fonts (like the medical records her doctor wrote, which help you understand the way doctors think about and classify disabled people) There are many memoir-like elements throughout the novel--my favorite parts overall--as well as essay-like reflections on a variety of subjects from Disney to Kate Middleton to Marvel movies, and finally, to actual Western European fairy tales.

But one of my main problems is that it’s so ridiculously unorganized. She repeats her points over and over--in random sections of the book--without adding anything new. All of her sections (memoir, doctor’s notes, analyzing media, talking about ableism and disability in general) are in what seems to be random order as well, with the few exceptions being an introduction to disability terms in the beginning leading into the most structured part: a look at ableism in specific fairy tale examples. Honestly, the book feels stream-of-consciousness, as if Leduc is talking to us in a cafe, saying, “And another thing!”

In the afterword, I learned that some chapters were printed independently as essays and thinkpieces, which then made things clearer. It’s why she kept repeating herself, why some elements seemed completely separate from her actual title and main ideas (superheroes as modern-day fairy tales? A stretch) … it was because she tried to connect a bunch of separately published works into one without enough editing.

Which then got me thinking about her actual title. “Disfigured: On Fairy Tales, Disability, and Making Space” … does that actually make sense, when you think about it? But this is getting too nitpicky, so that’ll be something I’ll talk about with my own friend in a cafe or something.

Now this is where things get subjective, and it’s why I listed a few of my disabilities upfront: I disagree with many of her points and takes on disability (& disability activism). Leduc writes all these chapters/essays with two models of disability in mind, while remaining firmly rooted in the idea that one model (the social model) is superior to the other. In her words, the social model of disability is “maintained by barriers, exclusion, and negative attitudes toward these disabilities more than the physical limitations of the conditions themselves. (If a building has elevators and accessible entryways the fact that a person uses a wheelchair doesn't limit them in the building in any way.)” She then defines the medical model of disability as linking “a body directly to a diagnosis and places emphasis on the intervention of medicine as a way of solving or eradicating the particular disability or condition.”

However, she does mention a third model--and sadly, it’s just a brief mention: something called “complex embodiment” by disability activist Tobin Siebers. The theory “raises awareness of the effects of disabling environments on people's lived experience of the body, but emphasizes as well that some factors affecting disability, such as chronic pain, secondary health effects, and aging, derive from the body.”

This theory is never brought up again. But it’s the intersection where I--and so many other disabled people--live. I understand that it’s not possible to encompass every disabled person’s experience in a single book like this, and Leduc does mention that in a little disclaimer upfront, but then she should have perhaps made her topic less broad. And more importantly, she should probably avoid making sweeping statements about disabled people as a whole. Throughout the entire book, she barely mentions pain being an accessibility issue for people, or honestly as being a symptom at all. When she does, it’s in passing, a “there are some people who experience pain,” and that’s about it.

She spends so much time in the book with a black-and-white look at these theories (the medical model is BAD, the social model is GOOD), when a more nuanced discussion could help provide a more thorough education on what disabled people need, who they are, and also leave less disabled people out. Especially when so many people wouldn’t be alive without medical intervention, whether that be surgery like Leduc had herself or medication like I take for my autoimmune diseases.

Which brings me to the next point: sometimes our bodies really do need help, sometimes our bodies are different, and cause us to be “disadvantaged”, as Leduc constantly says isn’t the case. Just because there’s nothing wrong with “different” doesn’t mean the difference isn’t there. Leduc herself quotes the website Disabled World in her book, which defines a disability as a “condition or function judged to be significantly impaired relative to the usual standard of an individual or group.”

The medical model’s obsession with curing is something that should be criticized, though, I agree with Leduc there. But if there truly is nothing wrong with being disabled or different, like Leduc constantly says, then there should be nothing wrong with literally inhabiting a body that needs help, whether that be social and/or medical.

I mentioned earlier that I thought the overall topic should have been a little more focused. It’s been almost a month since I finished the book, and I think this is increasingly becoming the biggest issue I have with it. The author wants to write about so much in this one book, and I applaud her enthusiasm, because we need more people like her in our community actively trying to make change. But trying to cover so much (analysis of older Grimm-style Western European fairy-tale ableism, real-life ableism, models of disability, memoir-like sections, doctor’s notes, analysis of Disney movies, analysis of superhero media, discussions about how anyone who looks different and/or has scars also falls within the umbrella of disability, etc.) just means barely touching on each point before rushing off to the next one, which happened in every chapter, but increasingly toward the end.

It also feels like maybe Leduc should have written this about what she’s obviously more passionate about: media representation and ableism. Only one chapter discusses actual fairy tales, but it also mostly devotes its page time to long-winded summaries. Most of the time, when Leduc discusses examples of ableism in media, she’s talking about Disney representation, Marvel movies, and then toward the end, Game of Thrones (where she tries to say that being a woman in that world means being disabled. Technically, using the theory she puts forward, it “works”, but I don’t buy it). But why does she try to cover traditional W. European fairy tales--going so far as to use them in the title--when she admits that she’s not very familiar with them? I think a qualitative approach would have worked much better for her rather than quantitative … but then again, I’m in the minority, looking at all these reviews.

I know this is getting very long already, but I want to mention sexism before I end the review. Reading the memoir sections, it seemed to me that a good deal of what she struggled from, in addition to ableism, was sexism and stiff gender roles. I spent the whole book hoping she would talk about the intersection of ableism and sexism or ableism and gender, but she never did. Instead of using old material and reaching to justify how superheroes are kind of like modern-day fairy tales, she could have talked about how Disney movies made her obsessed with happy endings, weddings, a prince and romantic love, etc., and how her body and her limp bred internal ableism inside her from a young age.

Okay, I’ve been working on this review for a long while, and my arthritis has made it incredibly difficult to finish it in the way I’d like. Instead, I think I’m just going to make a couple annoying lists to end it. Sorry about that! You have to do what you have to do.

Things I liked:
- The author mentioning changeling folklore and how it originated from the ableist fear of having a disabled child (I’ve been wanting to read something about this for so long!)
- There are some sections of her memoir where I feel such genuine emotion from her. The part where one of her editors asks, “Are you sure it isn’t a big deal?” held so much feeling.
- Loved her insight on the old belief that autistic children were the product of fairies because of the way they like to do repetitive tasks (it was believed in the 19th century in W. Europe that fairies were obsessed with repetitive tasks, like counting gold coins)
- Her points on productivity and usefulness in relation to disability

Things I disliked:
- The use of Hans My Hedgehog as a fairy tale example … Hans seems to violently attack a woman for reacting badly to his disfigurement, and the author takes his side.
- Her memoir sections also contradicting what she says in the other sections (i.e. people need accessibility tools like wheelchairs to have the same freedoms as abled people, but then she seems to resent her own wheelchair)
- It bothers me that she got interviews from people who are diverse in almost every way except for how they’re disabled, which is almost always cerebral palsy, like the author. The disabled community is so vast and holds such a variety of experiences and opinions, and she picked the few who are and think like her. It feels less like a discussion/nonfiction book, and more like a persuasive speech.
- She has a tendency to pit representation against each other: “It took seventy-two years for Disney to make a film starring a Black princess. Fifty-five years for a princess who was South Asian. Fifty-eight years for an Indigenous princess. Sixty-one years for a princess from China. No disabled princess yet, so far as I can see.” That’s not okay. Especially because many of those aren’t even great--or even okay--representations.
- When she talks about Ariel from The Little Mermaid being disabled, she only mentions her mutism in passing. Instead, she spends her time on Ariel’s legs. Why? Similarly, when she says Steve Rogers from Captain America has a disability pre-supersoldier, she fixates on his physical appearance, how he looks weaker in relation to the other soldiers, saying that’s his disability. A friend told me Steve Rogers canonically has disabilities: asthma, scoliosis, rheumatic fever, and pernicious anemia.
- Cherry picking. She does this a lot.
- Also forcing quotes to fit her points. An example: “She is speaking of fairy tales here. But she could have just as easily been speaking about superheroes--which is, after all, nothing more than the fairy tale revamped for the present day.”
- Using disability as some kind of umbrella term. Maybe I’m just not up to date with disability justice or something? But saying someone having any kind of scar means they’re disabled is wild. Same with saying Jafar from Aladdin is disabled for having “sharper” features--and making the reach that being left handed used to be considered a disability (by the quote she used, it was likened to being savages; I see racism and classism, not ableism). Our community’s experiences are already so vast and diverse … I feel like this doesn’t help us.

I’m so sorry. This has become so long, and I still have many more points. I’m going to end this by saying that Leduc claiming she has never read or seen a fictional woman with power who hasn’t gone mad reveals just how narrow her media experience has been. She is an example of how the media we consume shapes us. There are, in fact, many stories about disabled characters by disabled people out there, and it continues to grow! This book proves that, too, and adds to a list of growing nonfiction about disability. I’m glad it’s getting attention as well, and I’m happy for Leduc. I hope our community continues to produce more and more. I didn’t like this one in particular, but I will cheer Leduc on through her career.