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.