Cogut Institute for the Humanities

13. Disability Narratives and Research-Creation

What happens when illness changes the trajectory of a career? How can disability and chronic pain become generative experiences? And how can we reshape the way we think about disability to better live with differences in and beyond the academy?

In this episode of “Meeting Street,” disability scholar Emily Lim Rogers, a postdoctoral fellow at the Cogut Institute, talks with Megan Moodie, an anthropologist at the University of California, Santa Cruz. They explore what it means to work at the intersection of academic and creative practice, the power of art to articulate and build community around illness, and the need for new paradigms of accessibility.

Music and sound editing: Jacob Sokolov-Gonzalez. Production and administrative support: Gregory Kimbrell.

You can also listen to Meeting Street on Amazon Music, Apple Podcast, Google Podcast, Radio Public, Player FM, Spotify, and Stitcher.

Go to the show’s main page.


Amanda Anderson: From the Cogut Institute for the Humanities at Brown University, this is “Meeting Street.” I’m Amanda Anderson. In today’s episode, I turn the role of host over to one of the institute’s postdoctoral fellows, the disability scholar Emily Lim Rogers. Emily is joined by anthropologist Megan Moodie for a thought-provoking and moving conversation exploring the intersection of disability studies and creative practice. I hope you will enjoy listening to this episode.

Emily Lim Rogers: I’m Emily Lim Rogers, postdoctoral fellow at the institute, and I have the privilege of guest-hosting the podcast today. Thanks to Amanda Anderson for the opportunity. We’ll be talking about illness narratives, disability, and the academy. As Amanda discussed in a previous episode with Janet Lyon and Ashley Shew, universities have increasingly recognized and supported disability studies as an emerging field. But one of the major questions we’ll get at today is the tension between the personal experiences of impairment that disabled scholars face and their place in the academy.

Our guest today is Megan Moodie. Megan is associate professor of anthropology at UC Santa Cruz. She’s turned to creative writing and movement-based projects, working beyond the limitations of traditional forms of knowledge production and emphasizing the importance of artistic production for disabled people in particular. Megan has written about representations of myalgic encephalomyelitis, otherwise known as chronic fatigue syndrome, or ME/CFS, and also her own experiences with Ehlers-Danlos syndrome [EDS]. She’s written about the power of illness narratives, their creative and generative possibilities for disabled and sick people themselves. I’m excited to talk about all of this and more today. So welcome to the podcast, Megan.

Megan Moodie: Thanks so much for having me. It’s really nice to get to talk to you today.

Emily Lim Rogers: I wanted to ask a little introductory question here, and I wanted to read something that you wrote in a recent article on the website Hip Mama. I wanted to just read this quote: “Up until I became really disabled, I mostly wrote about academic things for academic audiences. Then I began to tell my story in a way I hoped lots of people could read, because the need just seemed so great. God, there are just so many of us, women with disabling progressive illness and pain, and someone needs to be telling these fucking stories.” Can you tell us a little bit about how your academic trajectory evolved?

Megan Moodie: Yeah, thanks. I often say that, for the first five or six years, that it was clear that I wasn’t just getting over some kind of illness, or I didn’t just have a hip problem that needed to be fixed and then I’d go on my merry way. In the first five or six years, it became clear that there was something systemic and progressively happening to my body and my mind. I really wanted to write about anything but what was happening to me. I was trained in South Asian studies and worked in Hindi-speaking North India for about 15 years, in the state of Rajasthan. I was trained in feminist political economy, which remains a big part, I think, of who I am as a thinker and a scholar and an activist. But I was really a pretty conventional political legal anthropologist.

I think I had some very ableist ideas about field work. And I always want to cop to those right from the beginning, because not only have I experienced now how wrong those were, but also because it does matter to my story that, as hard as my experience has been, I had already finished my dissertation. I had filed ... I had a degree, and I had a job in the period before I got really sick — and we can talk about how I used that term, but let’s just say before I got really sick. I want to flag this for a conversation about the academy, because my experience is not the same as folks who are trying to get through a Ph.D. program, get a degree, start fieldwork, who already have disabilities or identify as disabled. I think that’s a much harder, less supported trajectory. So, feels important to mark that.

But I had a really old-fashioned ... I used to carry all the water I would drink for the week on my back in a backpack five kilometers from the bus in rural Rajasthan in 100 degree heat, and all of these things that were not good for my body at all. Even then they weren’t, but I did them anyways. I think in some ways I became an anthropologist because I take my body for granted, actually.

Then, in 2010, and there are different origin stories for what happened with me, but in 2010, I became pregnant with my son. My pregnancy and delivery were the first sign that there was something really, really different about my body and that it was going to need a different kind of attention and intervention. I had a pretty typical runaround through the horrors of American medicine for the first five or six years of my son’s life, which also corresponded to the first five or six years of my job as an assistant professor.

And then in 2016 I was diagnosed with Ehlers-Danlos syndrome. So, faulty collagen — but in general what you have is the body’s coding for the production of collagen, which is in everything, really, in our bodies. There’s a bug in the code. There’s an error in the code. And this leads to a huge array of potential what they call comorbidities, which can be everything from joint instability ... If the collagen in your joints is not produced correctly, you get unstable and fragile joints. And in many people, but not all people, you get a kind of hyperflexibility. You can have fragile skin, easy bruising. And then there’s lots of things that people wouldn’t think of associated with it: for instance, issues with dysautonomia and the regulation of blood pressure and heartbeat, because even our veins are floppy when you have Ehlers-Danlos syndrome.

The other thing that’s relevant to my story is that EDS also seems to have a cluster of neuromuscular conditions associated with it that may or may not be — it looks like they are probably — related to neuro processing in the brain. And one of those is called dystonia. And so I am someone — this would be a scientifically controversial thing to say, but I will just go ahead and say it — I have Ehlers-Danlos linked dystonia. And dystonia is involuntary spasms or movements of the body, things like tremors and tics, also unconscious torquing, repetitive movements, muscles get frozen. And that developed as part of my overall symptomatology, again over the course of about 12 years, starting in 2010.

So I always quote Pradeep Chopra, who is one of the doctors that writes a lot about Ehlers-Danlos, that it is not a disease, it’s not a sickness, it’s a form of the human body. But it’s a vulnerable form of the human body. It’s a plastic form of the human body that is connected to all kinds of complications and comorbidities. Many of those will actually make you sick or live with extreme forms of chronic pain. Lots of people with EDS have chronic pain. So I use the term “sick” as a shorthand for also saying “intractable pain.” Or I will use it sometimes interchangeably with “disabled.”

Emily Lim Rogers: You mentioned pain, and it’s something that you write about a lot in your work. With specifically EDS, there’s a lot that’s difficult to describe about it, especially because, as you mentioned, collagen is everywhere. Connective tissue, it’s everywhere in your body. People might look at all of the systems that EDS affects and say, “Actually, these can’t possibly be related. This person must be a hypochondriac,” etc. It seems to me that in such a context, narrating one’s own experience can be especially powerful. At the same time, you also are moving beyond, a little bit, some of the traditional ways of thinking about pain and language that have long been emphasized in the academy, specifically the sort of indescribability of pain, the way that it destroys language. And the only way that we can talk about pain is using these inadequate, unsatisfactory metaphors. But in your work, you think a lot about the importance of creative expression and pain without thinking about language as lack.

Megan Moodie: There was a pretty profound shift in my work after my first book came out in 2015. I mean, I think you’re absolutely right that this does relate specifically to the question of my academic trajectory. And as I said, for the first few years, I really wanted to write about anything but what was happening to me. But by 2016, 2017, I was spending a lot of time housebound. I was an ambulatory wheelchair user by 2018. But I was home on the couch a lot. And so I was having to think about things like, what the hell is an anthropologist who can’t travel, who can’t go anywhere? And so I started by saying, okay, well, I’m going to go back to my field notes, and let’s see what’s in the margins. I’m going to take the marginalia of my field notes, and I’m going to write a novel, because I just need to do something that’s really different. I can’t go do more fieldwork. I’m going to do something that’s creative but still feels connected.

“ [F]or the first few years, I really wanted to write about anything but what was happening to me. But [...] I was spending a lot of time housebound. [...] I was home on the couch a lot. And so I was having to think about things like, what the hell is an anthropologist who can’t travel, who can’t go anywhere? ”

And then, I thought, okay, well, if I’m going to pursue this creative practice, I’ve learned a lot of bad habits writing for the academy. So if I’m going to write, maybe I should write well. And one thing I did is I enrolled in Ariel Gore’s School for Wayward Writers. And that was actually one of the places where I first met other disabled writers, other crips who were also struggling with what it meant to tell those stories of their bodyminds and their pain. And then slowly it started to trickle out. And once I started putting out essays, the responses that I got from friends inside the academy, outside the academy, it just became clear that there was — like the quote you started with — there was just such a need to get real about this ... I mean, I want to say it’s ubiquitous. I want to say that everybody knows a woman — in my experience, it’s been women (in the broadest, most non-biologically tied definition you could possibly experience) and gender-fluid folks who encounter the most gaslighting in the medical system, who end up falling through the cracks the most often.

So, on one hand, I kind of moved into these creative writing circles. But then I did what scholars do and I turned to the academic world about illness narrative. And certainly, there is this long tradition, this philosophical debate, that starts with Elaine Scarry’s famous book The Body in Pain [The Body in Pain: The Making and Unmaking of the World, Oxford University Press, 1987]. But people recite this chant that there is no language for the body in pain as if it’s true. It’s something that was just taken for granted. I mean, I’m certainly not the only person who’s critiqued or thought that maybe that wasn’t quite enough. There’s lots of folks. Alyson Patsavas comes to mind. Christina Crosby, I think, is someone who pushed on that too. And what I ended up feeling like, in terms of how could I communicate what it was really like to live with pain that’s so significant and debilitating that it’s hard to believe that you are not dying ... The body’s exquisite capacity to create pain that just is. It doesn’t have meaning. It’s not actually very amenable to the most common illness narrative, which is the quest, where you have an experience and you overcome it and you get better.

And I think, like most people of a writerly bent, I just turned to imagination. Imagination became the key to my not being undone by pain all the time. And in the philosophical debates about pain, that’s a problem. Because actually one of the things that Scarry and others don’t like is that the language becomes metaphoric or symbolic. What I came away thinking from that entire debate is that actually the problem was the absolute obsession with realism. And this is true both in that debate and also especially in our field of anthropology, Emily. I mean, I think that’s one of the articles of faith, that long-standing question of, well, if ethnography is — in a way, it’s always a fiction, so what is the difference between what you all do and a fiction writer? And when you peel back the onion, with most anthropologists you get to some faith in the real and in realism. But in my experience, it was impossible to tell the story of my living with this chronic pain, or the other people I know who live like this, and stay in this genre of social realism as a writer.

“ I think, like most people of a writerly bent, I just turned to imagination. Imagination became the key to my not being undone by pain all the time. [... I]n my experience, it was impossible to tell the story of my living with this chronic pain, or the other people I know who live like this, and stay in this genre of social realism as a writer. ”

Emily Lim Rogers: Yep. Yep. There’s a quote from Susan Sontag that I’m not going to get exactly correct, but she says something like, “The less is known about an illness, the more prone it is to metaphor.” And with conditions like myalgic encephalomyelitis, which I mentioned earlier, an illness that’s defined also by being bedbound, and with EDS, I mean, there’s so much that we don’t know about EDS. So people don’t like metaphor in general. They go towards realism. But there’s also this question of metaphor and belief that becomes particularly acute with issues like chronic pain, chronic fatigue, etc. Your work, I think, on the other hand, is interested in the generative power of metaphor in creating communities, actually, for sick people. I mean, you mentioned that your writing group, that was one of the first places that you actually encountered other sick people. So, turning to your new book, perhaps, tell us a little bit about what this pivot felt like where you’re actually embracing first-person narrative, you’re embracing that we need other ways of writing the body in pain.

Megan Moodie: Yeah, I mean, a little quick origin story of the book, which is that, if I was going to study, let’s say, folks with Ehlers-Danlos syndrome or the way that you have been working with communities with ME/CFS, I wasn’t going to get very far with any traditional methodology. And I think, Emily, this is the reason you’ve thought so much about method, because what are you going to say to a person with complex regional pain syndrome? They say, “It hurts. It really hurts.” I mean, it just wasn’t the interview. That wasn’t going to work. And there was this other issue, which is that, while my body was, at some level, an obstacle, because I couldn’t leave the house a lot, it also was the way that I knew things about other people. There was this enervated communication that happens between folks with disabilities. That was an embodied form of knowledge. And how do you know what you know with your body?

Well, I mean, I was not the first person to think about this. And I took so much inspiration from an earlier generation of particularly women of color scholarship. I’m thinking of This Bridge Called My Back [This Bridge Called My Back: Writings by Radical Women of Color, eds. Cherríe Moraga and Gloria E. Anzaldúa, Persephone Press, 1981], Audre Lorde’s work in that volume in particular, or Gloria Anzaldua’s La Frontera [Borderlands/La Frontera: The New Mestiza, Aunt Lute Books, 1987], throwing away the boundary between scholarship and the creative arts. And that work had been hugely influential, and yet so much of what we were doing was still business as usual.

Yeah, so I really wanted to find a way to do work that was adequate to this space of illness and pain that my training, as someone who goes and does realist research about real things, just didn’t prepare me for. Because it was imagination, it was humor, it was horror stories, it was a whole bunch of metaphoric, creative, imaginative thinking, talking, even artistic production. Lots of sick folks I know have some kind of artistic practice that they’re engaged in to survive in this space.

And so, the term they use in, I think, more in Canada, that I really recommend anyone who wants to think about this space — Natalie Loveless’, amazing book How to Make Art at the End of the World [How to Make Art at the End of the World: A Manifesto for Research-Creation, Duke University Press, 2019], where she does a good intellectual and artistic history of the idea of research-creation. So that’s one I’m borrowing a lot lately to think about the projects I’m doing as a form of research-creation, where you don’t decide on a method, or a genre, or a voice prior to engagement with the material you’re trying to work through. You try to train yourself in several different methodologies or artistic practices, and then pick the tool for the job.

My new book is called The Birthright Mansion: At Home in the World of Chronic Illness, which the title probably won’t surprise folks now. It is memoir, so it is the story of becoming diagnosed with Ehlers-Danlos syndrome as an adult. It’s also family history. I have a positive, what they call a positive family history for EDS. So tracking down some information about my paternal line was part of the process of learning. When you’re diagnosed with a genetic condition in adulthood, you don’t just need a new relationship to your body and mind, although you need that too, but there’s also this new relationship to history. Suddenly, my own personal history, my family history, it all looked very, very different. So I do work through that. That’s a nonfiction writing in the spirit of memoir.

And I am writing the story — I feel like I always have to say this — not because I think that I’m unique or different, and not because I feel like I have conquered, or vanquished, or I ... This book is for other sick people as much as it’s for anyone to learn about Ehlers-Danlos. I think I have something to share with other sick folks about what I’ve learned from them and from my own experience about the role of art and imagination in perseverance, in finding the guts that it takes to get up and keep going to the next doctor’s appointment, even though you know they’re going to tell you that it’s in your head and you should meditate. And it’s going to make you want to put your fist through the wall, except you can’t lift your arm, because it’s dislocated.

“ I think I have something to share with other sick folks about what I’ve learned from them and from my own experience about the role of art and imagination in perseverance, in finding the guts that it takes to get up and keep going to the next doctor’s appointment, even though you know they’re going to tell you that it’s in your head and you should meditate. ”

And things like finding joy in the face of all of that, and I don’t mean positive thinking, happy, happy. I mean much more like what Audre Lorde described as the erotic, which is a kind of embodied purposefulness that is shared with others. So that’s the thing about the way I’m trying to write this book is that it’s an individual story, but it is also an example of — and I hope — of the importance of community and building community, and even if that community is imaginative.

So the memoir is interspersed with visits to, what I call, my birthright mansion, which in the spirit of the old ars memoriae, or the practice of the memory palace, is an imaginary house in my mind that’s populated entirely by feminist artists from a wide variety of traditions and most of whom were challenged of body and mind in some way, some identified as disabled, some did not, mostly 19th- and 20th-century folks. And each room, we enter these rooms, and it’s an encounter with a particular artist or set of artists, and an encounter with a way of imagining a space where, even if you feel completely unhoused in your body, you can imagine home, you can imagine comfort.

I mean, there’s this great terrible irony I don’t know how to even make sense of, that, when you’re housebound, you can feel so unhomed. Because, often your own body and mind have become unrecognizable. So The Birthright Mansion is really my love letter to other sick folks to say, “Hey, come over to my house for a minute. There’s a big chair there, and Leonora Carrington and Cecilia Vicuña and Deborah Hay are going to stop by, and they’re going to give us a lesson in different ways of thinking about all of these cells in our bodies.”

Emily Lim Rogers: Yeah, I think this is interesting, because you’re trying to think about these forms of writing as creative survival work. You’ve pointed out elsewhere about the ways that homebound, bedbound, people tend to actually develop these creative practices. And this is something I’ve found in my own work on ME/CFS. You contrast this ... Finding joy doesn’t mean positive thinking, nor does creativity mean manifesting or something like that, or imagining yourself better or something like that, even as your work takes advantage of the uses of imagination. So I was wondering maybe if you want to talk about art as survival work.

Megan Moodie: Well, yeah, I think the best way to talk about it, and it would get back to some of the stuff that I haven’t maybe addressed as much that you mentioned about the limits of narrative, in terms of just my own experience of art as survival work. Now obviously, for someone who was a writer, I started writing through what was happening, but I had a pretty profound change in my embodied experience in 2020. My dystonia that had been ... Well, we just thought that there were strange little neurological things happening. A month before the pandemic began, I woke up one day, and I had lost muscular control of the entire left side of my body. I mean, it’s not really an exaggeration to say it like that. It was very sudden. I lost speech. I had a limp for years. It’s a very particular kind of dystonic limp. I experienced temporary paralysis of the arm and the foot.

These things are intermittent, so neurology has a very hard time with them. Because in neurology, you either have the brain lesion or you don’t. They’re really not great with dealing with folks like me. And then, everything shut down. And so I was just left with “Well, this is new. Wow, this is really something different than even what was happening before.” My small town neurologist said something to me like, “Oh, it’s not that bad. I bet it’ll just go away on its own.”

Emily Lim Rogers: That’s another way of saying, “We don’t know what the hell is going on.” Thinking about ...

Megan Moodie: It is. And patting you on the arm and being like, “Well, aren’t you a special snowflake? Get out of my office.” It’s a long story, but I did end up finding a medication. A lot of my dystonia appears to be related to the processing of dopamine. And so we did find a medication that has a profoundly positive effect on my muscle control. You might notice, as I’m speaking today — I made sure I took my medicine right before we were talking — so you might notice an occasional stumble. It’s an old Parkinson’s drug called levodopa. And it’s very important that it’s dosed every four hours. So if I miss my levodopa dose by an hour or two, my symptoms come back as bad as ever and immediately. So it is a little bit like you’re skimming through your day with this underlying possibility of losing muscular control.

And so, on one hand, I’m deeply, deeply grateful for science, and biomedicine, and the community that helped me do the research to find that medication. I had not driven my son in a carpool in five years, and I can do that now. At the same time, we live with the knowledge that I could get knocked out, knocked down, pretty much at any moment, because certain things will throw the chemicals out of whack, and suddenly the symptoms are all back.

But I wanted to share this experience with other folks that I knew in the Ehlers-Danlos world in case levodopa might help them with certain kinds of neuromuscular challenges. So I was going to make this quick little video to share on Facebook of “Hey, this is the before and after.” I went to my colleague, my dear friend Cynthia Ling Lee, who is a dancer here at UC Santa Cruz in the Department of Performance, Play, and Design, and I said, “I am going to make this quick video. Will you just maybe help me think about what movements will demonstrate this best on camera? I’m going to show you what happens when I’m off my meds. Because you’re a choreographer, maybe you could help me think about the before and after.”

Well, the long story short is Cynthia and I ended up in this dance studio together and playing the edges of that, being off the meds, being on the meds. And at some point she said to me, “When you’re off your meds, you’re dancing. It’s choreographically interesting to watch. There are dance forms in which people train for years and years to try to get some of the syncopated movements that your body’s just doing. You’re not even controlling it.” Kind of like, “Honey, I’m sorry to tell you this, but you’re actually making art.”

This is a profound shift in how I experienced my own — I don’t want to call it sickness — but my own neuroprocessing challenge. Because I had been working so hard to get it under control all the time, it never occurred to me that it was dance, and that, with support from other, especially I want to say other crip artists, because it matters that my friend Cynthia knows how to attend to my body as someone who also experiences chronic illness and disability herself, there could be an environment in which it would be safe to play that edge, to see what happens, to create from that space. And what you look at might tell you more about what it’s like to live in a misfiring brain-body than anything I’d ever write. So that’s how we started making film pieces. That’s just been an amazing surprise and a real joy.

“ This is a profound shift in how I experienced my own — I don’t want to call it sickness — but my own neuroprocessing challenge. Because I had been working so hard to get it under control all the time, it never occurred to me that it was dance [...] ”

Emily Lim Rogers: So a theme throughout this episode has been how generative your experience of being sick has been to your work. At the same time — and so many disabled scholars, especially you mentioned how you got sick after already being on the tenure track, and not everyone has that privilege — and so many disabled scholars do not want to talk about disability or impairment in their work. So many of us, I think, feel this pressure to submit to grind culture and not asking for what we need, despite the fact that all of this stuff can actually just be so generative. So I’m wondering if you have thoughts on that.

Megan Moodie: Oh my gosh, so many.

Emily Lim Rogers: Yeah.

Megan Moodie: I love this question. Disability studies and the growth of disability studies cannot mean super cripping. If the answer to making present disability not just as an object to be studied but as a methodology, which many of our colleagues, among them Cassandra Hartblay and Erin Durban and others, have talked about this — Arseli Dokumaci has also written about this beautifully — if these things are going to be a method, I mean, what’s the point of all of this if we just reproduce the same old imperative to produce in a particular kind of way?

Disability studies can’t mean perpetuating white supremacy. I mean, right? I mean, in anthropology, it’s like Black feminist anthropology told everybody a long time ago, you do not enter the field as a neutral body. You are always marked. You are always received based on all kinds of markers of race and class and gender and histories of oppression, but also liberation struggles, and all of those things are there. So we can’t have a disability studies that also ignores our debt and imbrication to that kind of theorizing. And just mindlessly reproduces white supremacy.

Also the policing of the walls of the academy. I mean, one of the main goals I have, I think, right now is just “Tear it down, man.” Because, I include myself in this category, people who I know who have been able to maybe access biomedicine in a way that — and they’ve made it work for them, so they can be doing a few more of the things that they would like to do in their lives — it’s almost always because they’re attached in some way to a research institution. And so why we wouldn’t be totally invested in tearing down the walls so that we are sharing what we learn, we’re sharing our experience, that’s the disability studies I want to be in.

Here at UC Santa Cruz, it’s a beautiful place, but I mean, physically, this is not the most accessible place if you have a mobility related disability. And because it’s so mountainous and hilly, if you have a disability that requires lots of technological interventions, it’s not the world’s most accessible place.

But two years ago, I was allowed to convene, and I’m now the chair of, a group for faculty with disabilities and chronic illness. We’re a networking group that’s really just geared — it’s not a service position — we are just geared towards community support and retention. And what we do in there is talk through experiences, help folks, and I would say that having now done that and having talked to lots of other academics over the years, as you said, Emily, the shame and the fear is striking. It’s startling. I’ve not seen so much resistance to the very notion of disability as I do among many, many academics. But also, once we convened this group, the experience of comfort and release and relief at having people — there’s maybe 12, 14 of us — having people to talk to about it has been profound. There’s not many groups like this around the country.

One of the things that we do there — and this is a way that I think a kind of form of work that could be done nationally — people don’t even know what to ask for. I didn’t even know, I still don’t know what to ask for. Now that I’m thinking in this vein, sometimes something will occur to me and I’ll go, “Wait a second, how is it not a reasonable accommodation if my hands don’t always work, especially in the morning — and they don’t — shouldn’t I have some assistance in putting on the lapel mic and getting all the tech set up in my very complicated now classroom where I have to teach?” And I put that forward to our Center for Teaching and Learning, and, do you know, they actually gave me an assistant who comes in and does some of that physical technological stuff. But that’s only because I am really in this mindset of “What would actually help me?” Rather than “How can I make sure that no one ever, ever sees that I am different or that I struggle with certain aspects of this work?”

And yet, we do gain things. It’s just it can’t look like we’re used to the academy looking. I mean, I take the example of my office. This is a podcast — we don’t have visuals — but Emily can see behind me. My electric wheelchair, which is named the Jazzy — that’s really the model. It’s a Jazzy. It’s red. When I started using the wheelchair in 2018, there was no space that was big enough to house that wheelchair. So I couldn’t turn it around really in an office that had also a working desk and bookshelves and things like that. And so I had two offices for a while. I had a regular office and the wheelchair office. If I was having a bad day, I would meet the students in the wheelchair office, and if not, I’d be in the other office.

But I said, “Eventually could I have an office where I could have all the things together? And by the way, could my office be more like a studio? Because, in fact, this sitting at a desk doing this very conventional businesswoman-type look of academia is actually not going to work for me anymore. I have some video equipment. I’d also like my students to be able to do a drama exercise in their graduate seminar.” So I did eventually get an office that’s big enough to accommodate the chair and was able to work with some folks here on campus and design it in such a way that it can in fact be used as a studio. That’s an example of something that I think people wouldn’t think to ask for. If disability studies work is going to just be business as usual, it’s not doing its job.

“ If disability studies work is going to just be business as usual, it’s not doing its job. ”

There’s been a real push to this universal design learning [UDL], is the thing that all campuses are pursuing to help accommodate the 33% of incoming undergraduates across the country who need an accommodation of some form in their class. And every campus is pursuing this UDL approach. I mean, we’ve all encountered this stuff. But the whole point of universal design learning was supposed to be learning difference. And so, if all of the solutions are technological, if all of the solutions involve more time on a computer or a screen reader, that is not embracing the enormous range of learning styles that they are.

I’ve been so influenced by an amazing book by Annie Murphy Paul called The Extended Mind [The Extended Mind: The Power of Thinking Outside the Brain, Houghton Mifflin Harcourt, 2021]. Reading it was like “This is why I always have a thousand Post-it Notes stuck to my wall.” Because it’s actually an extension of the work that I’m doing, processing in a certain kind of ... story or a certain kind of information. If student success, and learning difference, and accommodating in education, is going to really serve folks with disabilities, and if we as faculty or researchers invest in disability studies are going to be part of that, we are going to need a lot more space for play and for materiality and for dance and craft and ritual, and we’re going to have to fight pretty hard against the hypertechnolization of approaches to access.

Emily Lim Rogers: Well, with that, I think you’ve given our listeners so many provocative things to think about, so thanks so much for this conversation, Megan.

Megan Moodie: Thank you so much for having me.

Gregory Kimbrell: “Meeting Street” explores some of the most important and creative work being done in the humanities today, through conversations with scholars and thinkers who are extending the boundaries of their respective fields. The show is produced by the Cogut Institute for the Humanities at Brown University. Gregory Kimbrell is production manager, and Jake Sokolov-Gonzalez is sound editor. If you enjoyed this episode of “Meeting Street,” please follow and leave a review wherever you listen to your favorite podcasts.