FAIRY TALES AND DISABILITY - with Amanda Leduc
Sun, 11/15 9:38PM • 1:07:54
SUMMARY KEYWORDS
disability, people, disabled, world, stories, fairy tale, book, life, talking, fairy tales, disfigured, society, idea, ugly duckling, shrek, thinking, recognize, community, festival, accessible
SPEAKERS
INTERVIEWER, LEDUC
INTERVIEWER 00:03
Today's conversation is an activity supported in part by the California Arts Council, a state agency, and the National Arts and Disability Center at the University of California, Los Angeles. Of course, any findings, opinions conclusions contained herein are not necessarily those of California Arts Council, the National Endowment of the Arts, and the National Arts and Disability Center but are a conversation from one person to another, about coming to terms with disability in our culture, coming to terms with our stories, and, as storytellers, what are things that we can consider and advocate for today,
LEDUC 00:36
In the book, and I still, you know, stick by this, I think we need to get away from asking that question of "why can't I be like everybody else?" And instead ask, you know, "well, why should I be like everybody else? Like, why can't I just be me." This goes for, you know, how we view people and bodies in general, this is not just specific to disability, but specific to all kinds of ways of being in the world. I think, as a society, we are not doing a good job of letting people just be who they want to be in the world. And we really need to understand that.
INTERVIEWER 01:22
Welcome back to HOW DID WE GET HERE. Today, we talk Amanda Leduc, author of Disfigured: On Fairy Tales, Disability, and Making Space. It is a book that parallels with her own story and health journey, as well as fairy tales all the way from the beginning of time to here we are at Disney. We're going to be talking about changing how disability moves through our minds through story--and the stories that we tell in our cultures. There is this writer Petra Cooper, who writes about disability culture in a 2011 work called Disability Culture and Community Performance. This quote that's sort of sticking with me is that "disability culture is the difference between being alone, isolated, individuated with a physical, cognitive, emotional or sensory difference, that in our society invites discrimination and reinforces that isolation. And the difference between that, all of that, and being in community." So today, we're going to try and be in community while we also face certain realities that we'll talk about throughout the time. So thank you for joining us. Thank you for the support of the California Arts Council, and the National Arts and Disability Center at UCLA. We hope that you will continue to engage in these conversations, particularly in these pandemic times, where the realities of disability are facing many people, many countries and many more are learning about the discrimination, as well as the limitations on access in places where we need to go and grow. So thank you for joining us as we talk story, as well, as flip the narrative and talk about the same stories we seem to keep telling about disability from all the way back from when, with our folk and fairy tale sometimes. Let's ask some questions about the stories we tell and maybe, as this author suggests, find a way to ask the right question. When I read your book, one of the things that was interesting, you talking about fairy tales, and disability and making space was that when I--I have an inherited disorder, but disability sort of found me more in certain ways as far as the physical stuff later in life--but that meant that when I was encountering folks, or I quickly learned--as many people know this--you learn to suss out who's a friend or who's not or where there's support and where there's not, where people are real, so to speak. And there is just this really juvenile, immature response a lot of the times. It comes back to--when I think about some of the things that were discussed in the book--it just reminded me of that kind of like that was the face that I saw from grown people and how the reactions and the limits of "well hope you get better!" You know, just--did you hear, what do you see? Do you know, there was just this this immaturity and so I really appreciate it. And I wanted to start with a quote. There was, I think, it's Sarah Jamin. Do I have it right?
LEDUC 04:14
Sarah Jamin.
INTERVIEWER 04:15
Okay, so she says, "you can't be fully yourself in one space or another. Justice work"--which is what she works on--"justice work is hard when nobody talks about it. How do you create policy, when you're in danger, basically, of missing, you know, an entire demographic?" And she talks a bit about the hyper vigilance, that you understood yourself, having to be hyper vigilant and super self aware at the same time. There's that constant tug, where you tell that story, there's a parallel in the book, a parallel narrative of your personal story, and experience in society and personally with disability and then, of course, the fairytales from the beginning of time all the way to Disney. What I wanted to start with is how you talked about essentially ableism, which is a word I rarely say but it is important. I've worked in civil rights works in other ways and it's important to start calling, you know, a thing a thing. "Ableism seeps into everything we know" and you found that whether you are home or when you try to get away that you couldn't, you know, sort of escape this reality, this rhythm. I want to ask you what kind of came for you? Why fairy tales? We'll get deep into fairy tales. So I'm excited to talk Hans Christian Andersen and all that. But what sort of sparked it with fairy tales for you and talking about that as a way to frame the personalization, but also the--as you know, as writers and as artists, as communicators--that kind of reality of what we do in our culture.
LEDUC 05:40
Yeah, well, I talked about this a little bit at the beginning of the book. There's sort of a kind of fairytalesque beginning to it, where I, about two years ago, was away on a writing retreat off the coast of Seattle. And it's this lovely, you know, 40 acre farm. And there are lots of wooded trails that you can go and walk through during the day. I was working on a novel and having trouble with it. So I went for a walk to just kind of clear my head. As I was walking, I was thinking about how forests are traditionally very inaccessible places for people with physical disabilities in particular, often because paths aren't evenly marked, or things like that. I mean, I walk with a limp. I have weakness on my right side. But I do, you know, I can access these spaces. But forests are tricky for me because I always have to be watching the ground and making sure that I'm not about to trip over a root or a soft spot on the ground. And so I was thinking about how, okay, forests are inaccessible. So that means that disabled people can't access the forest. And then at the same time, I was thinking about how we often associate the forest with fairy tales and magical settings. I thought, Oh, well then disabled people are sort of exempt from magical settings as well. And then all of a sudden, I started thinking about fairy tales, and suddenly realizing that there was actually a lot of disability representation in fairy tales that I hadn't been aware of before. The reason that I hadn't been aware of it was because of the way that disability is portrayed in fairy tales in particular. It's either portrayed as you a marker of a villain so you have, the evil dwarf or you have Rumpelstiltskin, who is described as an ugly hunchback dwarf. You know, the ugly stepsisters. In one version of Cinderella, the stepsisters have their eyes pecked out, so they become blind as a punishment for bad behavior. And as I was walking, I started thinking more about this and thinking about how it seems so obvious all of a sudden, this connection between disability and fairytales, and I wanted to write more about it and explore it, but I sort of figured that, it would have been written about a lot more before. When I got home after I finished my time at the retreat, I did do some research and found that there wasn't actually a lot in the cultural criticism sort of arena, looking at it from a pop culture lens. There is work being done in academia, and I reference and looked at a number of wonderful academic texts, in the course of writing the book. But ultimately, I discovered that there wasn't really a pop culture lens on disability in fairy tales and this connection. So my initial plan for writing the book was to make it very much a cultural criticism look, so I wanted to look at the history of fairy tales. And I wanted to look at fairy tales around the world and how they incorporate or exclude disability in various ways. But almost immediately from the beginning of writing the book--I wrote the book from kind of the beginning to the end, I went chronologically, which doesn't often happen for me, I sort of write all over the place and then wrestle things into shape afterwards. It's how we all work as writers. So I wrote it from beginning to end, chapter by chapter, and almost right from the beginning, there was a personal side of things. So the personal story was coming out. Looking at my own narrative as a disabled woman with cerebral palsy and looking at how the fairytale narrative specifically had really influenced the way that I saw myself as a person in the world and the expectations that I had for myself, as a disabled person who pretended for a long time that she wasn't disabled or, you know, quote, unquote, "not really disabled." It wasn't until I reached my mid 30s that I really recognized the ableism inherent in thinking that and then also started to pick apart why I had thought that about myself and my own narrative for so long. The act of writing the book actually really helped me figure out how. Even though it sounds almost embarrassing when I say it out loud, but you know, as a young child exposed to Disney fairy tales and then other versions of the tales and the sort of, you know, becoming enamored with this idea of the happy ending, it really kind of structured how I thought my own life was going to fall out. Definitely, in terms of romance, right, there's this idea that you you grow up and every girl is going to meet her handsome prince, or handsome whomever. And this idea that you experience trial and tribulation as a child, but it's okay, it will get better, everything will work out fine. To all intents and purposes, really, my life has, in many ways, worked out that way. But the reckoning that happens and Disfigured came about was because of getting to my mid 30s, and suddenly recognizing that my cerebral palsy is becoming more pronounced as I age. I get tired more often, my limp is more visible, and I experienced muscle strain and muscle weakness, andcertain things are becoming harder as I age and will doubtless get additionally, more difficult as the years go on. Disability was something that I had managed to turn away from for a really long time, because it had been mild for so long that I had sort of been able to pass as an able bodied person. And then, all of a sudden, there was this reckoning in my mid 30s: your life is going to turn out differently from how you initially imagined it to be.
INTERVIEWER 11:48
You thought you could overpower, right?
LEDUC 11:50
I thought I could overpower, because that's another narrative that we often tell disabled people, the idea that if you work hard enough--and this, again, is tied to the sort of fairy tale, the dichotomy of the happy ending, or that the horrible ever after, you're either happy or destitute at the end of a fairy tale. When it comes to disability, in the sort of cultural perception of disability in the world, we very much have relied on this idea that people overcome their disabilities, they don't let their disabilities define their lives. Someone is perhaps paralyzed in an accident and then learns how to walk again. That kind of accomplishment is really feted and really held up as an example for what human beings can achieve. That becomes really problematic, because it doesn't recognize that we all live in and exist in different bodies and have different lives that all each have their own narrative. So essentially, the book is about looking at that simplification of narrative and that idea that we've all held in society for a really long time: that you can't be disabled and have a less than perfect body and also have a happy life, or a life that's worth living. All the sort of cultural ideals that we aspire to-- and you can look at things from fairy tales, to superhero movies to the Olympics--and all these kinds of narratives that we discuss in society that have a lot to do with this idea of a perfect body is one that looks a particular way. And it's easiest for everybody if our bodies all subscribe to the same kind of idea. What that does is it takes the onus off of society to improve. It takes the onus off of this kind of sense of collective responsibility that we have for each other. This idea that we can build a world that is inclusive of all different bodies and all different disabilities and abilities, if we're willing to work together and really acknowledge that there is no one size fits all. That assumption about one size fits all starts in the stories that we tell when we're very young, this idea that if you do X, Y and Zed a happy ending will come to you. A happy ending looks this very particular way.
INTERVIEWER 14:21
Of course, that paves the way. So to make a little more complicated before going back to the simple: so my mother's Honduran and my father is from the Deep South of the States here. So passing--being a light, lighter skinned one in the family--was always an issue and it wasn't until I had to face disability in a similar kind of way that you're talking about and heard some of the same language and just realized what I was doing. You're one of the few people that would see me with a variety of the braces that you're seeing me with. It's both your own ability to come out, so to speak, your own comfort and then your own safety, frankly, in other professional or personal spaces. Or trying to hold on to something that is a . . . fairy tale. But it is also justified in a serious way that we all have faced. And then the pandemic's also brought the conversation here as well, as far as who's evaluating you to pull the plug so to speak. I do mean that quite seriously as far as the kinds of conversations of human value that we're having and what can quickly happen. And then people of course even surviving the virus that are left with prolonged illness, right? We all know this very well. I mean, there's a Disability Twitter conversations of just "Oh, we've been telling you all for so long, like, Are you kidding me?" So with the fairy tales, I remember you listed the witch with a crutch, the blind seer, the sad but saintly boy who lies immobile in his bed. Let's talk about those aesthetics a little bit. Especially, I think pop culture is a really important one, because this is the way these things get translated to us. And we can look at that as writers, that's how we may end up translating some of the same tropes. Some of that's first draft thinking, some of that's just really lazy. You know, if you really look around you, as many of us either have or are around people who have disability. Judith Heumann wrote a book Being Heumann, out in the last year or so. She talks about how the great majority of folks are going to end up at some point facing disability. That's the reality. So I love how you talk about aesthetics and sort of the invisible hierarchy of that and scars and the Ugly Duckling. So I want to sort of throw all of that in the pot, that witch with the crutch, the blind seer, the sad but saintly boy who was immobile in his bed? The scars that are used to portray villany. I think you mentioned that the Bond villains, and then what was the statistic with the Bond villains?
LEDUC 16:50
I think it's, it's three out of the last four Bond films have had facial scarring of some kind as a mark of the villain.
INTERVIEWER 17:00
Right? So this is obviously calling out storytellers and a variety of things, as far as what that subtly seeds in us. And that started a whole campaign in the UK. So can you talk a bit about aesthetics and how that symbolism kind of continues? Because I think calling it out, which I think your book does a really good job of calling it out, and then weaving that into what that affects, personally, to that ultimate thing of "oh, I'll get better" or "I'll just have to do it a little bit more, do it a little bit differently, so I can pass, how long can I pass?" And we're all trying to pass as this thing that does or does not exist or doesn't need to exist? Or is, frankly, not the only thing that exists in a planet of 8 billion people?
LEDUC 17:40
Mm hmm. I mean, the thing that fascinated me with digging deeper into the fairy tale connection was this idea that stories--before we had wide degrees of scientific knowledge--stories were one of the ways that people used to give shape to difference in the world. So you look in the 15th, 16th, 17th centuries, if you had a child who was born with disfigured limbs or other congenital abnormalities. The idea was this is a fairy child, a changeling child, it's not your actual child, like something magical has happened, to take away the child that you were supposed to have. And this idea of the magical as separating the someone who is different, out very early on, continues to persist in popular culture, even as we've also grown our scientific knowledge and grown you know, our understanding of disease and what makes bodies look the way that they look and all those kinds of things. So you have a very long tradition, centuries upon centuries of stories being told where someone who looks different, is made to be an outcast, is made to be different from everybody else, because there's something about them that the world as it was at the time could not fully explain. So even once we got to a point where our scientific knowledge can start to explain these things, the kind of cultural hold that those stories have on us, runs very deep. Part of the work of disability rights--I mean, there's there's so many levels on which Disability Rights works--but part of the job of spreading awareness and normalizing disability, normalizing people with mobility impairments out in the world and people with facial differences, is getting people to understand that this is not something you need to be afraid of. This is something that's normal. You know, I have two young nieces. When I think about the shows that they watch now, well, they both have been fans of Peppa Pig, which is a British television show. There was a character on that show that was introduced last year, I believe called Mandy Mouse. And Mandy is in a wheelchair. There's something really powerful about a show for children, which is showing kids at the age of three, four or five, that there's this character who uses a wheelchair. This is just what she uses to get through the world. When young children see that at a young age, it becomes something that they've seen. They understand it, they say, okay, you know, people use wheelchairs like Mandy Mouse, and it becomes something that they're not afraid of. The ultimate goal, I think, is to normalize wheelchairs, for one thing to normalize, the other outward markers of disabilities, and then also to normalize invisible disabilities as well, through the conversations that we have through a lot of the television stories that we see now or the movies that we're exposed to. There's a real push in the disability community to start showing people that have varying different kinds of disabilities precisely because the more that you're exposed to it in popular culture, the more you can kind of understand it as an idea. And the less apt you are, as a non-disabled audience, to react with sort of fear and revulsion, which is something that has happened for disabled people for a really long time. There's there's still a lot of work to be done, obviously, in this arena. But I do think we have made a great deal of progress over the last couple of decades. And it is work that I hope continues and just keeps on gathering steam.
INTERVIEWER 21:58
This reminds me of Alice Wong, who just edited a book called Disability Visibility, a collection of people's personal stories on going through this and this is definitely the book to check out as well this year. I'm reminded that just a couple of months ago, I was introduced to a Pulitzer Prize winning play called the COST OF LIVING. It actually does feature an actor with cerebral palsy, but it features also a woman in a wheelchair in a variety of those stories. I wept. I had to stop midway, just the grieving that went on, seeing that displayed. It reminds me of this part from your book which I really appreciated. It also shouts out another book sharing the stories. So I'm reading from page 148 Disfigured: "In 2018. I read Maggie O'Farrells I Am I Am I Am Seventeen Brushes With Death, and a section describing the ongoing effects from a childhood bout with viral encephalitis. I see myself in every word. I fall or stumble if I don't concentrate. When I ascend or descend stairs, I have to look down at my feet and apply myself to the task of meeting each tread. Don't ever talk to me when I'm climbing step stairs or negotiating a doorway. These acts require my full attention. I will never play blind man's bluff or surf or wear high heels or bounce on a trampoline. I dread book festival stages with steps to fall in front of an audience. When I carry babies, especially new ones on stairs, I do it like my primate ancestors, employing my spare hand as extra ballast." And you go on to say, "It has meant so much for me to find disabled community in unexpected places, to hear a writer I admire detail her difficulties and recognize those could be my difficulties, to see another woman with cerebral palsy talk about experiences on stage and imagine that could also be in my future. As an artist, as a human, as a person, it does something tremendously powerful." Coming back with Amanda Leduc, who the author of Disfigured, who also has a new book coming out next year from Random House. We are talking about disability culture, but also the stories that kind of move through our minds that we take for granted. That if you're not telling quite the the thing that we need for access and justice and dignity are just not true. So I was sharing that quote from Maggie O'Farrell's I Am I Am I Am: Seventeen Brushes With Death, about what it means to see it portrayed. The audience, I hope, with this is folks who are in a similar situation, who are grappling what you and I are talking about personally, as well those institutions that are perhaps needing to think about it differently as far as how they portray. Like the National Disability Theatre has was given a grant the last few years to essentially look at how both behind the scenes and in front, in performances, you can embody those illnesses as well as disability in a more authentic way. You have books like Disability Visibility, you have this book like Disfigured, and others I'm sure you're familiar with. The other thing we're trying to avoid is the trope of the pity. That sad saintly boy right? That "oh, what they overcame." You use the example--zipping back to pop culture, shame on you, James Bond, by the way, Bond movies need to get it together--you mentioned Shrek, which, of course was, in our literature world, it's the anti-fairy tale, as you say. It's a new thing we're going to do, we're going to show she's also an ogre as Shrek. But you you also say they stuck with the fact of she how she felt about that. Can you speak about the Shrek example and that yin-yang of that "don't pity me, let me be, " of what that is both in the stories before and then what we're kind of contending with right now, what we're showing ourselves or children and what we kind of grapple with, in our minds, when we first confront disability that we may not even know?
LEDUC 26:43
Well, I mean, first of all, I do love Shrek. I think it's a great film on many levels. And I really enjoyed the way that it poked fun at the many tropes of fairy tale culture. But it always interested me at the end when Fiona transforms, and you know, this sort of initial expectation of the audience, right, is that she's going to transform into a beautiful, red haired, you know, beautiful human form. And the twist is that she stays an ogre. And she's surprised at the end of her transformation. She says to Shrek, "But I thought I was going to be beautiful." And he says, "Oh, but you are beautiful." And you know, the thing that we understand in the course of the film is that he loves her. She is beautiful to him, even though she might not be conventionally beautiful or what we would maybe understand as conventional and beautiful as fairy tale lovers and viewers watching the film. It was just really interesting to me to see that because it was like, she did not believe that she was beautiful once that transformation was over. She needed her husband--her Shrek--she needed Shrek to tell her that she was beautiful to him in order to see her own beauty, right? She needed to see how she was like Shrek in order to recognize her own beauty in much the same way. And I know we'll get to the ugly duckling--
INTERVIEWER 28:23
You're literally reading my mind. "Just like Ugly Duckling."
LEDUC 28:32
The ugly duckling, in case anybody doesn't know, it's a fairy tale by Hans Christian Andersen and it's about his duckling who grows up in a barnyard. He's sort of ostracized and outcast and told that he's ugly while he's growing up. He spends a lonely winter on his own, trying to survive and being very sad and being told he's ugly all the time. Then, in the spring, he comes across a group of these very beautiful birds. He goes to kind of introduce himself to them. Also, at one point in the fairy tale, he says, "You know, I will go to these beautiful birds and they will kill me and they will just put me out of my misery," for the crime of being ugly, essentially. Then you see that the beautiful birds see him and recognize him because unbeknownst to the ugly duckling over the course of the winter, he has grown into a beautiful swan and the reveal in that tale is that he was a swan the whole entire time. It was just that he looked different from the ducklings, you know, the family into which he had found himself when he was quite young. The ugly duckling is often told as a tale particularly to young women. I think when when young girls are little this idea of like, "Oh, you know, you're just going through an awkward phase you'll grow into beauty," beauty will be yours eventually.
INTERVIEWER 29:57
Which is synonymous with liberty, freedom will be yours. Maybe there's a material attachment to that. But there's this sense of "I will have worth, I will be loved." But this is just the the phase of this, and then that will happen then that goes on happily ever after forever.
LEDUC 30:14
Exactly, exactly. And, you know, I was struck by the idea that the ugly duckling again only recognizes his beauty when he is put in relation to these other birds who look like he does, right? So he didn't have community before he couldn't see himself reflected in others, and he has community now and recognizes the beauty in that. There's a lot to be said for that kind of community. But I think there's something disingenuous about the way that we use the ugly duckling as a fairy tale because it sort of relies on this premise that there's kind of an inner beauty or a certain level of physical beauty that's always there. It's just that other people don't recognize it. That can be frustrating, I think, particularly in the world of disability, when you have people whose disability really does, society really does ostracize them as a result of the disabilities that they have. Then it becomes very difficult for people to find community and for people to find understanding, and all of these things kind of compound one another, and contribute to the continued isolation of the disabled individual. The idea of the ugly duckling, much as with the the sort of narrative of Shrek is, again, that idea that the happy ending will come like, just don't worry, things will work out eventually. There's a kind of reliance in that idea, on the sense that, "oh, things will work themselves out. And we as society don't really have any responsibility to make that working out come about. This is just a thing that happens, it's an individual triumph. If you work hard, if you pray hard, you know, if you are a good person, and all of these things will come time."
INTERVIEWER 32:10
You will be "lifted of the affliction," which kind of goes into our evangelical story, which we can often have here in the States, that the affliction will be lifted from you and then you are a child of God. I mean, it really is just this, then you are allowed to participate in community. But, as you said, if you flip that, it is difficult to perceive, because we don't--at least certainly here in the States--we don't have as many as some other culturally significant policy or some stories, where it's a little bit more of a communal expectation.
LEDUC 32:44
You know, it's hard. I mean, I'm Canadian, I live in Canada, and we have a health care system, which is a little bit more universal. I shouldn't say it's universal. Anyways, because it's not, there are certain things, you know, that aren't covered. But even here, I think even with that sort of baseline idea that you are taken care of and I for one am very grateful I had a series of surgeries when I was a child and my parents didn't pay a cent for those. There's still a sense that it's the disabled person's responsibility to ultimately take control of their own lives and overcome their disability.
INTERVIEWER 33:30
Right, so "we're not a burden," which you do talk about as well, the other sort of trope is that it's a burden upon society and upon the person which is...
LEDUC 33:39
Yeah. And I think we really have still a lot of work to do to, to move away from that. To understand, again, that we all occupy a different space and a different way of moving through the world and the mark of advanced societies is not that it eradicate all of these disabilities--as people who are into science fiction or things like that often say. Again, there's a happy ending, either technology will eradicate the disability or magic will make the disability go away. I think there's this understanding that's the society that we're working towards when, in actuality, what disability activists have been arguing for a really long time is what you want is a society that just instead makes room for all of these disabilities and works together to understand that the value of a person does not lie in the degree of their able-bodiedness. Because once you get into that, there is then the question of well with your able body, what can you do? How do you contribute to society, and how is your worth measured by and attached to how much you can do for the world, right? So that then leads back into all these ideas. It's the same in Canada and in many ways you look at people who are on disability benefits are basically forced into a life of abject poverty because you can only have a certain amount of money and assets, which I think it's $2,000 in Canada, and you make a very, very small amount of money per month in benefits. If you make over that amount, then you no longer qualify for your disability benefits, which allow you certain life saving medications, allow you various accessibility and mobility and assistive devices that you may need in order to thrive. It's just that this whole idea that if your life looks different from the regular standard, able-bodied life, it is somehow a life that is worth less and is less valuable than a life that can, quote unquote, "contribute to society," in very measurable kinds of ways. All of which is really problematic and really terrifying, because you just can't measure human life in that way. You can't say, you know, person x is more valuable than person. Why, because they can do more, they can, contribute more, and they can have a 40 Hour Work Week job as opposed to a job that is--
INTERVIEWER 36:19
As if that is the measure of a productive citizen, because if we--I'm not going to go on the long hero narrative, but if we were to name disabled scientists, I mean, Stephen Hawking comes quick to mind. If we named disabled scientists, artists, folks in any profession or not in a profession that have contributed to our society, it would be a tremendous long hero's list, if not a majority of a list, quite frankly. But without having to show "Hey, no, we're okay," which is a similar thing that happens with immigration of showing, "Hey, no, no, we're good. You know, these are the good ones so want to support that." Getting to what you're saying, at a deeper level, because of the reality that many people will face disability, that that's the trajectory of life right now, you know, that that is, you know, life to death. And there's certain trajectory of things which our human body are going to experience, the probability of that for the majority of people makes it inhuman and just of no sense to exist in a planet where we treat each other with that kind of measure. There's a similar punishment here. Since I'm talking from California, we'll give an example of federal food stamps, even during a pandemic. The maximum benefit for many millions of people for food is $16 a month, 16 US dollars a month, which you can translate to most other countries would not be enough in many other countries, most of the countries of the planet, much less the United States of America. You're right, there's an insistance of that poverty, essentially to punish. As if you "need to get better again," as if you need to somehow do something. But if you do, you're also punished for that. So it keeps you in an entrapment of really, frankly, literal low value. It's very dehumanizing. Not to mention, of course, it doesn't even provide for... I'm pointing at $100 device, I'm wearing another $90 device, I have to use a another $500 device. That's not even everything that I have to do. It took me five years to do that. And I didn't do that necessarily because I could afford it, I did it to a point because pain {and injury} got so bad. I had no choice but to go into debt for that. And, then, how you're going to pay that back when you're in that cycle, right? That's barely anything compared to the tens of thousands of dollars, outside of even covered care in most places on the planet. The fact that we're having to even provide those kinds of things is also because research and a body of work isn't being done to aid people on what may actually but support them as well. So it goes counter in the sense of acting as if these things don't exist, when the reality is they exist, for millions and millions of people, obviously billions on the planet. By continuing to ignore that in the fairy tale of policy or the fairy tale of our fairy tales or pop culture enjoyment--or what we do or choose to think we can do with our lives--that continue to ignore something that's the sky. That's air, that's wind.
LEDUC 39:17
You know, it's interesting, you mentioned Stephen Hawking. I read on Twitter a couple of months ago, an observation that I thought was really interesting. It was essentially that people often hold Stephen Hawking up as an example of "oh, well, he, quote unquote, didn't let his disability define him, like, look what he accomplished." But the interesting thing is, Stephen Hawking accomplished what he did, because he had the support with his disability that he needed. I mean, you think about him as a speaker, and how often he went to places and spoke to universities and traveled around the world. All of these speaking engagements and every single time he went on a stage, there needed to be a ramp for him to get onto that stage--which is an accessibility accommodation that disability activists the world over have argued for and fought for for decades. People don't see that when they look at a figure like Stephen Hawking or they look at other people who again, you know, quote, unquote, they overcame their disability. No, the world met them, where they were, in order for them to thrive as much as they could, as much as anybody could.
INTERVIEWER 40:39
And that's not the reality for millions and millions of people. Can you imagine if you could provide them the same body of support? Let's take a quick break. All right, so let's talk about the "how" a little bit. So you're a communications coordinator for the festival for literary diversity (FOLD). It was Canada's first festival focused on a diversity of authors and stories, if I have that right. I think that's a really great place to talk about the how and some of the practicalities. You know, there's a how in literature and how in the writers room, which I think would be really helpful kind of thing to leave in people's mind. But also, how do we translate that? So one thing was an example was ramps. What are other things that obviously now people are learning? Some people are learning sometimes. Oh, excuse me, in very tiny circles, people sometimes put captions on things. And they sometimes send audio transcripts. But we're still not completely there. Sometimes there's someone signing, but this is sporadic, certainly far from universal experience. In most cases--I'm sure you've experienced this--you have to keep asking again and again for the modification even if you said it. Even if, right now, you're at home and at a distance for things. I don't know what you think but it's humiliating, traumatizing, exhausting to have to repeat that question. So proactively, if we were to flip that: People think when they do a performance or they do a television show or start writing, anything like that, "how do I make this accessible?" If they put that in? They often think about that, in the sense of how do i do the lighting? And how do I do this? And how to do that? What would be kind of a cadre of things that that come to mind, that you all make sure to do so that way it's accessible? It's really a matter of do you wish to reach audiences or not, because this is another way of nicely saying you aren't reaching a lot of us, which is why the diversity conversation--especially on race and class--is starting to happen--and on race particularly--because for the experience, for many of us, it's not reaching us. It makes a difference, because we're speaking to an audience of what? Of the princesses who survived, "the swan?" And the swan is temporary, even for the swan. So what would be a more humane way to essentially approach that from your experience?
LEDUC 43:18
Well, I guess one of the things that I should say, first of all is, so the FOLD, the Festival of Literary Diversity, which is where I work in Canada, we've been around for five years, and we have, in May, an adult literature festival, featuring diverse authors from Canada and around the world, and then, in the fall, we have a children's Literary Festival. Accessibility has definitely been a journey for us. We are at the point now where we have closed captioning in all of our events. This year, with the pandemic, both of our festivals were held virtually, and everything was captioned. It was all free. So it was our most accessible festival yet. But I think one of the things that we have recognized is that accessibility is a journey for us, and we need to remain accountable. I think that is one of the first things that I tell people when they're saying "we want to make more accessible events." I say, "Well, you need to, first of all, be aware that you're accountable to the people that you're trying to provide access to. You need to listen to the community, you need to take suggestions from people who maybe haven't been able to attend your events or access things that you've put out into the world in the past precisely because there are barriers. So one of the first things that we did with the festival in our first year was we made sure that it was held in a wheelchair accessible venue. One of the things that we've learned as well over the the ensuing years is wheelchair accessibility doesn't then mean that an event is entirely accessible because you also have other sensory disabilities. We had a long discussion. We have an accessibility advisory committee composed of disabled readers and writers from across Canada who give us input throughout the year about different things that we do with our events. One of the suggestions that they had was around holding trauma-informed events and looking at how we frame things through a trauma-informed lens. Making sure that it was communicated that there was a safe space for people in the festival if they felt like they needed to remove themselves from a situation and go somewhere--a sensory room or even getting into various religious considerations and things like that, and being open to feedback. Also, again, being accountable to that feedback has been a really strong hallmark of the work that we do. We've been very upfront with the fact that we are not 100% accessible, because there are so many things that go into something being 100% accessible. You're talking about wheelchair accessibility, you're talking about having captioning, and ASL, possibly in multiple languages, you're talking about sensory disabilities, you're talking about allergies, you're talking about a whole bunch of different things. But our plan has always been to listen to feedback and try and incorporate as many of the suggestions as we can in a given year, and then build on that. And always be open and upfront about that journey. I think one of the things that can be frustrating and demoralizing for organizers--not that this is an excuse--is that they often don't know where to start where accessibility is concerned, or they're kind of overwhelmed. In many cases, especially if you're looking at, in our case, we don't own a building. So we had the option of choosing an event space that was wheelchair accessible. If you're looking at a business, for example, that is needing to deal with retrofitting their current premises to make it more accessible, obviously, yes, there are significant economic factors that come into play. But I think it's not enough now to just say, well, we don't have the money to do this event, therefore, we can't, we will never be able to.
INTERVIEWER 47:25
Well, we make choices. I think the other flip side of that, if you think about planning most any other kind of event, is that there are always choices that are made. And so the question is who is the choice made to? It's made for this funder or making it to be in near this location, we're only making choices. And I think what many of us are trying to say is whether it's from that to who you choose on a panel to who's compensated, how they're compensated, to having translation or not, that there are choices that are being made. And so there's an awareness of the audience, of course, who are you serving, and that's a primary thing. I think, what you what you said, starting with the fact that we're we're accountable, we're probably not going to get this completely, right, we're learning how to do this, we understand that it may adjust. And we're gonna have to take advisement on this, which isn't a way of abandoning responsibility, but actually saying, like, "Hey, we don't have 10,000 eyes, 10,000 ears, can folks give us a perspective of that?" Because I do think this is also one of the first times that we're trying en masse to perhaps be a bit more accessible. So that's just getting to agreeing that it's a problem much less, these are the possible solutions as a first start, to even be heard. So I hear you in the sense of starting with that, as an organization or as a person in the first place, knowing that you're going to have to ask, knowing that you're probably going to learn the hard way.
LEDUC 48:52
Mm hmm. I was just talking to a friend about this yesterday, actually. The internet being the public platform that it is, especially now in the pandemic, when it is sort of many people's primary method of communication and reaching out to the world. It can be difficult to commit to a path where you know, that you're going to make mistakes and you're going to make mistakes publicly. I think it can be very hard, particularly for organizations and event organizers that maybe haven't thought as much about accessibility before, to go down this road, because there is so much that's coming at you all of a sudden, and making mistakes publicly on the internet lives in everyone's mind in a very particular kind of way. But I don't think that it's something that we can get away from now. I think in many ways that magnified lens of accountability for accessibility is important and necessary because when you don't have that. What you do have is organizations who say "Well, you know, we would love to do this. But we can we can't, we don't."
INTERVIEWER 50:03
Right. And so this is where it's become an interesting parallel in my life because a lot of the first things in my life were spent focusing on civil rights and equity reforms. So what I would hear all the time, embarrassingly, was "oh, well, we don't"--even though we work in communities of color, in poor communities, it like it was constantly--"I don't know who to ask." And I'm like, how is that even feasible? What is your world? And then you realize just how much the disconnect is from who is making--in my perspective and experience, sometimes, who is profiting off of the need of communities, and then who is experiencing things and having that exploited? It became what can seem quite a lazy answer. And really confusing answer, especially when that's your work, when that is specifically your work. At least right now, I know, with Alice Wong, that she's an example of someone that's tried to start a body of consultants here. For artists, there's a directory in the States from the National Arts & Disability Center. But I do think people are looking for not just a diversity stamp, somebody that will come in and "say, hey, look, we did it." But really, how do you translate sort of these cultural ideals into actually being able to integrate that into into what your work is doing? And, at least to your point, I think magnifying it puts enough heat there that it can't just be "Well, you know, we don't know where to look." So one other example that I'll share: folks are having different conversations about the Oscars, and some of the numbers of the Oscars have put up because for Latino representation, there's been a lot of conversation of how are we 66 million in the country. Of course, for U.S. history, this large part of the States was Mexico first and, of course, before that an indigenous population, but it becomes a question with a discrimination we're facing with the policy things with it, even the question of kids in cages and these things. How in the world is this happening? And how is that happening from an industry based in one of the most diverse and largest Latino communities in our country? So it becomes a willful ignorance so that I agree with you and want to talk about an invisible hierarchy as well with disability. Can you speak to that as well? Because these things mirror what's happening in society and are certainly happening within the issue of disability. Can you talk about that invisible hierarchy and what you mean by that? Because these are things that for some of us, it becomes obvious or we experience it. But many people, either willfully or otherwise, are kind of in denial of this stuff.
LEDUC 52:41
Mm hmm. It's a hierarchy that I speak about it in the book, obviously, and I think there are only certain elements that I can speak to about it, because I am white. So I do recognize that my experience with disability has been quite privileged in some ways. But I think, with disability, there's--in both the non-disabled gaze and in many ways within the disabled community ourselves--a hierarchy. It sounds weird when I say it out aloud, but people with intellectual disabilities, for example, versus people with physical disabilities. And I say that not to pit them against one another.
INTERVIEWER 53:38
It's not a derogatory thing. You were comparing, I remember, the beauty and the beast? Again, back to the things that are allowed to pass, you're allowed to pass if you are XYZ. This mirrors a lot of other sectors of society as well. "This is not as valuable or it is not permitted to pass." It's a simplification. But that's kind of my quick {summary}.
LEDUC 54:02
And I think it goes back to what we were discussing earlier, that idea of value and how much value of a body has, how much value a person has is directly tied in our capitalist culture to how much they can produce. How much you can produce physically, how much you can produce intellectually. If you can't produce physically, these varying factors and varying ideas contribute to the way that society views disability and disabled people. It sounds abstract when we're talking about it, but it has very real world consequences, right? When you look at the fact that disabled people in the U.S. can be paid as little as--I think Imani Barbarin said, on Twitter--it was something like 23 cents per hour in certain areas and certain institutions in certain states. You know, this has been allowed to go on for a really long time because people conceive of the disabled life as having a different kind of value, as you know, not worth--on some level--being paid as much as a non-disabled person. Because what the non-disabled person does with their money in comparison to what a person might do with their money. These are the kinds of uncomfortable conversations that we really need to be having in wider circles. Imani does a great job of this in her activism, Vilissa Thompson, Keah Brown, all of these writers and activists who are on Twitter and online talking about the specific intersections of race and disability and how disability in popular culture has so often been portrayed under a white lens, how that impacts the way that disability is viewed economically and socially. All of these things are really crucial conversations that we need to be having. They need to be not just within the disability community space, they need to happen outside of it. I think one of the things, among many things that I discovered in the course of writing Disfigured, was this assumption on the part of the wider world that disability literature specifically is viewed as a very niche thing. Because it's assumed that disability literature is only for the disabled community, no one outside of the disability community is going to want to read a book about disability. We need to open that up, because people, as you have mentioned, many people will experience disability in some way, shape, or form at various stages of their lives. But also, over and above that, it's just a decent thing to do, right? Like you shouldn't bemade to think about disability considerations by virtue of the fact that hopefully you will become elderly at some point in your life, and it's maybe possibly experienced disability as a result of that. You shouldn't be thinking about disability issues, because you might one day become disabled as a result of an accident, you should be thinking about disability issues, because disability issues affect all of us, disabled and non-disabled alike, and disability literature and the stories that we tell are for everybody, not just for the disabled community.
INTERVIEWER 57:34
You know, it's a parallel again, for the conversations we've been trying to have for other diverse voices and not recognizing why that's so essential to how we function every day. They're human stories, they're stories we all go through, that we all experience-- whether they're direct or not. I'm sure you can think of many things that you've seen or read that are not your direct experience that were unbelievably moving to your own understanding of life. Without them we would be blank. It's just as much with anything else. But the fact that activism has to happen to have the story told...One thing that you mentioned with fairy tales is you often have a character who's saying, "Why can't I be like everyone else?"
LEDUC 58:17
This is, of course, part of the personal journey to write in the book. I still stick by this: I think we need to get away from asking that question of "Why can't I be like everybody else," and instead ask, "Well, why should I be like everybody else? Like, why can't I just be me?" This goes for how we view people and bodies in general, this is not just specific to disability, but specific to all kinds of ways of being in the world. I think, as a society, we are not doing a good job of letting people just be who they want to be in the world. We really need to understand when we look at children and see how they're starting to understand the world and how do we help them in difficult and perhaps negative ways, by virtue of trying to ensure that they are not made fun of on the playground and are not trying to help them--
INTERVIEWER 59:19
Survive, right?
LEDUC 59:20
Trying to get them to survive. I remember a conversation that I had with Imani Barbarin a couple of years ago. I was talking about the fact that I could pass almost. I was bullied a lot on the schoolyard because I had a visible limp. But part of my mental dealing with that was to not disavow but just to not acknowledge my disability, just to pretend that I wasn't disabled for a long time. When I was telling Imani this, I said, You know, I know that there's a lot of privilege in that statement, able-bodied passing privilege. She said, Yes. But then there's also the question of survival, right? You as a disabled person made a choice to act a certain way so that you could survive in the world, you could survive on the schoolyard, you could survive in what you perceive to be the social sphere. This is how you're going to make friends, this is how you're going to make sure that you're not ostracized and made fun of and all these kinds of things. It was really helpful to see it that way and to perceive it that way. Because I think we teach our children especially-- and this is where it comes down to fairy tales, again, because these are the stories that we tell kids, when they're very small, right? We teach them that they need to act a certain way, that they need to want to be like everybody else, in order to be happy in the world, when what we should be teaching them is, you don't need to be like anybody else. You can be you, you can be yourself, you can be however you want to be in the world, and that is perfectly okay. In fact, it's worthy of celebration, and we should all be celebrating you for who you are.
INTERVIEWER 1:01:03
While it's strengthening them, I think this is the dichotomy some of us have, of course, by making sure they're also prepared when they encounter that feeling, or that experience of discrimination, or that serious mistreatment, or serious injustice or violence--quite on the spectrum of things--while also preparing them. That's back to that dichotomy. It's serious. It's what Jamin was saying: that you can't fully be yourself in one self or another, in one way or another. Of course, what you're saying, that if we can find a way to allow someone to be themselves when they're young, allow someone to see when they're young, to allow other people to be themselves. That's a stronger place to be in rather than the fear of--unfortunately, this is a reality for many people throughout times--of the fear that you've done something wrong, simply because the society is not doing that. Doing its job to weed out, so to speak, and make it a fearful environment, as opposed to make it a bit habitable.
LEDUC 1:02:09
Exactly.
INTERVIEWER 1:02:11
So my last question is on really what I appreciated about the book. I was thinking about reflecting on a lot of these stories and then my own experience, in the very few things that I'm seeing now differently in my experience, that have really just broken through and move me because because they weren't part of the story and the understanding of how to get through life. There were things that could have been understood, appreciated a lot earlier, to handle the challenges of later. But, you know, people are trying to find themselves. So if folks are trying to find themselves or, in general, just anything that you're enjoying, that you're just liking, or that's lingering for you. It can be in any form, it doesn't have to be an art form, it can be a plant--all hail plants and trees these days. I do want to say I really appreciate this, because this, of course, layers on many of the big social discussions that we're having these days, that are truly important and, ultimately, the same thing of human dignity. So I do want to thank you for contributing to that conversation. But if anyone wants to leave with other wisdom that you have, other joyful things. They don't have to be good, good. They just have to be something that's just lingering for some reason.
LEDUC 1:03:26
Well, this might sound strange, but I have taken a great deal of joy during this pandemic year from Star Trek.
INTERVIEWER 1:03:37
The old episodes or like the new stuff?
LEDUC 1:03:39
New stuff, the new stuff. Well, I shouldn't say just the new stuff. Pretty much all of it I did a Next generation rewatch last year, which led into Deep Space Nine rewatch, which then stopped. I'm a big fan of Star Trek Discovery. So I've been watching the new season as it's been coming out. But I've really been taking solace in that idea of this new sort of galactical utopia. It's probably most likely in response to all of the turmoil that's going on in the world right now. But I have always been drawn to fantasy and to science fiction. Disfigured has its roots in that love affair since I was very young with fantastical stories. I've been finding a lot of joy in watching these science fiction shows and then also reading science fiction. What little reading I've been able to do this year, the science fiction reading has been a huge joy and part of it, and it's been a lovely showcase of the human imagination. During this particularly difficult time it's refreshing to remember that we can still dream and still imagine and create wonderful works of art that go beyond what we see for ourselves in this world in which we're in.
INTERVIEWER 1:05:13
We got to see it to be it. Thank you again for joining us today on how did we get here. Today's conversation was supported in part by the California Arts Council, a state agency in the National Arts & Disability Center at the University of California, Los Angeles. Any findings, opinions and conclusions here and are not necessarily those of the California Arts Council, the National Endowment of the Arts, and the National Arts & Disability Center, but are a conversation between a couple of folks in the community writing and trying to advocate and navigate the situation ourselves. I want to also thank podcast producer, songwriter, musician Gavin Conner for putting together this seamless episode. How Did We Get Here looks at how we move people, places, and ideas--and what's really going on here. I want to thank Amanda Leduc for having that conversation on her work Disfigured and want to encourage you all to look for her novel in 2021 coming out of Random House, as well as looking at some of the work that we discussed such as Maggie O'Farrell's I Am I Am I Am: Seventeen Brushes With Death and following the world of the Festival {of} Literary Diversity up in Canada, where Amanda also works. Thank you all for joining us and I encourage you to find other artists and other folks working in disability studies, particularly look at the home bases, i.e. the National Arts & Disability Center. You can find a directory as well as other grants and programs and information about artists and look at the Paul K. Longmore Institute on Disability, which across sectors and academic areas, share what is going on and offers other opportunities to explore voice, reality, and tell the story of disability in our age and time. If you're asking about the "how do we do all of this, what else is going on out there"--if you haven't read Disability Visibility, edited by Alice Wong, you want to get that collection, but also take a look at the Disability Visibility Project. It's an online community dedicated to creating, sharing, and amplifying disability media and culture. So you most definitely want to take a look at that. Thank you again for joining us. Keep finding each other. Learn more at www.arevalossketches.com