A conversation with two scholars in disability studies, Janet Lyon (literary studies) and Ashley Shew (science and technology studies). We explore how disability studies has influenced academic research and participated in larger communities of activism, with special emphasis on the challenges of the pandemic.

Transcript

From the Cogut Institute for the Humanities at Brown University, this is Meeting Street. I’m Amanda Anderson, the show’s host and director of the institute. The COVID-19 pandemic has cast light on forms of structural inequality, such as systemic racism and profound class inequities.

Disability is another key area where forms of inequity and bias have been exposed during COVID, and issues around disability have arguably not received the full attention they deserve. Today, I will talk with two scholars who work in the cross-disciplinary field of disability studies. We will explore how this vibrant field has contributed to thinking and activism on disability and how it might help us better respond to the current crisis.

My first guest, Janet Lyon, works within the humanities and was trained as a scholar of literature. My second guest, Ashley Shew, works in the cross-disciplinary field of science, technology, and society studies. In her work, she brings humanities methods to the study of technology and technological innovation, especially in the realm of medicine. These two interviews together show the deeply interdisciplinary and engaged character of disability studies.

So let me first welcome Janet Lyon, an English professor at Penn State who has published important work on modernism, feminism, and disability. She also directs the Disability Studies Program at Penn State. Janet, welcome to Meeting Street.

Thank you so much, Amanda. I’m really glad to be here.

So, you’re a scholar of modernist literature, 20th-century literature, who wrote an influential book on manifestos and 20th-century artistic and political movements with particular emphasis on feminism. What brought you to disability studies?

Well, it was a very personal event, which is that I, in 1991, had a child with Down syndrome, and it changed everything in my world, changed my social being, it changed my intellectual being, it changed my spiritual being. I was, you know, early in my career and all settled in and had a previous child, and pretty much thought I knew everything ... which, you know, once that happens, you’re in trouble.

When Jamie was born literally everything changed. I felt like a giant curtain rose in front of me and all of a sudden I saw the actual world. I saw how huge the world was. I saw how limited my own views had been, my own experiences. I came into a wholly different understanding of embodiment and mindedness, and human value, and potential, and generativity.

All of the things that normate culture tends to shut down around an image or model of what counts as the correct way to be embodied or minded. And when that happened, I realized that my entire intellectual bearings had to shift.

I had kind of been prepared intellectually for this kind of shift because of my work in feminism, which, of course, you know, challenges ideological givens about value and embodiedness, and also, you know, with my studies of critical race theory, which posed similar challenges to a kind of status quo of value.

But having Jamie showed me, for myself, the reach of what was in front of me socially and intellectually that I could move into with great joy.

Thank you for sharing that incredibly powerful story, and it is such an interesting intellectual and personal journey. Can you share with our audience your perspective on the history of disability studies within the university? When and how did it develop?

Well, disability studies can be thought of in kind of waves the way that, of course, we think about, for example, feminist theory and feminist studies, and feminist activism. But with disability studies, it came online within universities in the mid-’80s, and it was spearheaded at the time by folks both in the U.K. and in the United States, who, I’m thinking in particular of, in the U.K., some influential figures —

who themselves had become disabled in life as scholars, either through mobility or paralysis, that kind of thing — who saw firsthand a shocking change of one’s life when one became disabled, and the disability, they argued, was very much attached to the built environment and stigma rather than their own new forms of embodiment.

You know, so this gave rise to what’s called the social model, which understands disability as being produced socially rather than intrinsically by a single broken human. But — that wave has been tremendously influential, but other issues have come up that those first scholars really didn’t attend to.

It was a hugely white field. It was a field that dealt particularly with mobility issues. It didn’t take into account intersectional challenges. It didn’t take into account the effects of poverty and race and geopolitical situations in the creation and treatment and stigmatization of disability.

So there ha[ve] been successive challenges to that first wave that have been extremely productive, including, I would call it perhaps, a kind of phenomenological model of disability, which addresses how it feels to be disabled.

That’s interesting because, you know, when we think about lived experience and really trying to dig deep into how we can better understand lived experience, we think of the humanities. That is typically one of the key ways of characterizing the humanities’ contribution.

And of course, disability studies, like other advocacy-based programs of study, works through an alliance among different disciplines and among different divisions of the university, and there’s always been a kind of a special alliance between the social sciences and the humanities.

But I’m curious to hear you talk just a little bit more about what precisely you think the humanities brings to the table in the case of disability studies — in addition to this notion of lived experience.

That’s a great question and I want to quote you back to yourself from a TEDx talk that you gave in which you said that the humanities does not directly impart value, but rather promotes the clarification of value. And I think that that is key to understanding the relationship between the humanities and disability studies.

As you say, if the humanities is dedicated to the clarification of value and has not thought about disability in that action towards clarification, then disability is not a part of whatever value gets clarified.

Let me start with history. Up until very recently, disability has not been a part of the records of history at all, except as a kind of, perhaps, an individual moment of somebody becoming disabled, when in fact the history of disability underwrites the last 300 years. It underwrites anything that we have to think about biopower. It underwrites anything we have to think about how government functions, about who counts as human, about what rights are, about what, you know, being non compos mentis or compos mentis.

All of our structures depend upon, for the most part, a negative valuing of disability. As a very well regarded historian of disability [William Loren Katz] once said, disability has a history, and it is history worth studying, not because it is of course extremely interesting and important on its own,

but it is interwoven into everything we think and say about ourselves as a people — nationally, internationally — and to have it dissolved into the edges of that fabric is to completely misrepresent how we as a national people, as an international people have moved forward.

Same is true with literary study ... I can’t actually say it’s the same, because in literary study, disability until very recently was typically represented, if at all, as an emblem of something else, or a metaphor for something else, or a form of idiosyncrasy, or a kind of through line in a plot that then moved nondisabled people towards enlightenment or towards solving their own problems. This has been called a literary prosthesis by some disability scholars.

Let’s turn to the current context of the COVID-19 pandemic. Issues surrounding disability have become an important topic of discussion during the pandemic. What do you think are the most pressing issues facing people with disabilities in the current health crisis?

Boy, yeah, that’s huge. I want to just say that I don’t identify as disabled, so what I am going to say here is drawn from my participation in kind of robust social media conversations.

I will say that one kind of mortal concern has been the question of the allocation of resources during the pandemic, people with COVID-19 who have so-called underlying conditions and this somehow diminishes the importance and value of treating people with disabilities as one would treat anyone medically.

So there has been a really chilling effect of stories in which people have been denied medical care because nondisabled people are seen to be more worthy of medical care when resources are scarce. That’s terrifying. That’s immoral. That’s illegal.

This is linked to discussion of quality of life. And believe me, when people start talking about quality of life, you’re in trouble. Who is to judge anyone’s quality of life based on a diagnosis? There’s a very famous discussion, a heated polemic between Harriet McBryde Johnson and Peter Singer years ago, where they hash this out.

Harriet McBryde Johnson was a brilliant, disabled lawyer and writer. And Peter Singer, you know, is a kind of utilitarian philosopher who had a rubric for whose life counts and whose doesn’t. And Harriet McBryde Johnson repeatedly said to him: you cannot predict quality of life based on what you see or what you read about a diagnosis. People with disabilities have tremendous, robust qualities of life, but that’s not evident in a hospital setting where the diagnosis is read before the patient is known in a living context.

So the allocation of resources has been a huge and frightening thing for people with disabilities. The folks who have chronic illness or immunosuppressed conditions for one reason or another, who have always been cautious in public and always had to think twice about whether they wanted to go out or not, are now in full lockdown.

This is a tremendous burden. There’s all kinds of depression and anxiety around the fact that the pandemic has sort of boxed their world in even more, and it doesn’t help that there are jokers around not wearing masks. And the final thing that I think is really important is that people with disabilities who have been denied employment because of their disability are now seeing a world in which it’s perfectly normal to work from home.

Folks with disabilities who have applied for jobs and said, “I can do this. Can I just do it at home?” — “Oh, no, you can’t do it at home. It’s not part of our corporate model. We need to be here. We need to be a team.” Guess what? That wasn’t true. It’s clear that everyone has now been given disability accommodations that were denied to disabled people according to extant business models.

Let’s turn for a moment to your role as a teacher, because you are a very experienced and popular teacher, and you direct a disability studies program at a major state university, Penn State. What have you learned from students in the disability program you direct or from student disability activists?

Yeah, it’s been really great. I teach a course called Introduction to Disability in the Humanities. People take that class because they want to learn about disability, or they think they know about disability, or they have a disability themselves, or they have someone in their family who is disabled, or they worked for Best Buddies in high school. This is just a very, very eclectic room.

And so it’s usually composed of students who, you know, are sort of interested, and about three weeks into the class, you can watch the conversion take place. You can just see light bulbs going up over their heads, like “Oh my God.” You know, they have this profound shift, not unlike the shift that I had when I had Jamie, where they suddenly see disability everywhere, the implications of disability everywhere.

And you know, kids these days are very much inclined towards social justice, and they see the social justice implications of disability problematics and they start proselytizing to their friends, and they are really excited. And many of them go on to minor in disability studies, many of them go on to work with disability in mind in their professions.

Then we have students who are themselves disabled or who have a very close connection to people with disabilities. And some of those students have never had the language before to speak about their disabilities, about the forms of inaccessibility that they’ve had to deal with, about even, like, just disability pride, not having had a context in which to really think about their disability as a site of creativity and generativity rather than as a site of stigma or just pain-in-the-ass-edness. Sorry, that’s not a word.

And so I have worked with many students in that area who become disability activists themselves and who teach me about what it means to go from not having an avenue or a discourse for their lived condition into how to integrate their own activism into who they are as students and who they are going to be as citizens.

Let’s turn to your own current scholarship. You are writing a book about the part played by disability in modernist literature with a particular emphasis on intellectual disability. Can you share with us some of the findings or aims of your work? What are you hoping to contribute to scholarship on modernism and work on disability through this project?

You know, I have been a big fan of modernism my whole scholarly life, and in part it has — even before my conversion to thinking about disability — my fascination and my joy that are connected to modernism has to do with the way that modernist literature and painting and music and philosophy are constantly searching for new ways to represent embodiedness and mindedness.

That is to say, breaking from a model of robust health as an ideal, modernism very often is on the hunt for a kind of new epistemological understanding of embodiment. So if you think about Virginia Woolf feeling the shower of atoms, like, representing thought as a shower of atoms, or if you think of D.H. Lawrence with his extraordinary discourses about the fingertips and the hands and the, you know, the blood as like a me that exceeds kind of bourgeois expectations for what one should be in terms of embodiment — that has always really drawn me.

So you can see how thinking about disability in that context kind of lights it up. It lights up modernism’s approach to embodiment, and at the same time modernism lights up the kinds of things that disability teaches us about embodiment. So that was very interesting to me.

Lots and lots of modernists, as they’re interested in mindedness, also as individuals, tend to be really eugenic in their orientation, and that contradiction, right, that they as humans can sign on to eugenics, but as creators produce a case for the value and brilliance of non-normative mindedness is the drag that pulls me through this book.

This constant conflict between the writer and the literary product which tell totally different stories, and in mining that seam, I’m showing how alternate forms of mindedness actually produce glorious worlds that we would never have unless we had disability.

That sounds wonderful. Now the title for the book is “Idiot Child on a Fire Escape.”

Yes.

And the subtitle “Modernism and Disability.”

Yes.

Tell us about the main title? Where is that from?

That’s the title of a poem written by Mina Loy, the modernist poet. She wrote it in the early ’40s which makes it a late poem in her oeuvre, and that is actually a key to one of the through lines of my book. This poem is just a kind of a visual sketch of a child who clearly has Down syndrome sitting on a fire escape in Lower Manhattan.

And she treats the child as a kind of object of study, it’s almost like a still life painting. But the little tiny details in the poem suggest that that child is really well cared for. Even as the child is this object of staring, the gaze of disability, the child also carries in her — I’m going to call it a her, I have no idea — in her being the marks of love.

And that love is part of this book as well. Many of the characters whom I isolate in modernist literature, that is to say, children with disabilities, children with intellectual disabilities, those characters are simultaneously isolated from the texts and drawn into the discourse of the text through networks of implicit love. The texts themselves produce these networks, these assemblages of love that surround characters with intellectual disability.

That’s wonderful, and I want to thank you so much for joining us here on Meeting Street today, Janet.

Thank you, Amanda. I really enjoyed it, and I am excited about this series.

I now turn to my second guest who inhabits the borderlands between science and the humanities and who is especially interested in the critical study of technology from the standpoint of disability studies. Ashley Shew is an associate professor at Virginia Tech in the Department of Science, Technology, and Society.

Her areas of research include philosophy of technology, disability and technology, and ethics and the body. She's the recipient of a National Science Foundation CAREER award for a five-year project entitled “Disability, Experience, and Technological Imagination.” Ashley, welcome to Meeting Street.

Thank you so much for having me.

Tell us a little bit about the project funded by your NSF CAREER grant entitled “Disability, Experience, and Technological Imagination.” What do you hope to do with this project, and how does it build on the work you've done previously?

Yeah, I'm so lucky to have this grant, and I'm surprised every day that I do because I think of my work as humanities work. So, that the National Science Foundation funds my research and funds it well, I'm always ... I'm still shocked.

What's wonderful about the CAREER grant — and I think the CAREER grant is really one that more humanities scholars or people in these interdisciplines ought to be thinking about — is that a career isn't just about your research.

So research has to be a primary component of it, but the grant also wants you to talk about your teaching and your outreach and how they're integrated with your research, and I think humanities scholars are uniquely situated to talk about the research, teaching, and outreach all relating to each other.

So the grant is really trying to look at narratives from the disability community about technology and the thing we know is that these narratives from actual disabled people are very, very different from what we find in media accounts — movies, films, and books, as well as sort of news and informational programing — about disability, as well as the sort of stories we see out of design communities about what the disability community wants and needs, as well as engineering and science and medical disciplines and how they think about disability.

This has several, you know, products as part of it. I'm working on a book about techno-ableism. We'll also have pedagogical materials that my undergraduate and graduate assistants are categorizing and talking about what other narratives we find, but also pushing back. So much of disability narrative is pushing back against dominant narratives.

So really figuring out what those dominant narratives are, and other people engage in this work as well, especially out of media studies, talking about narratives about disability. But we really want to add disabled voices in and respect disability community members and what they have to say and then treat disabled people as the experts about disability, because, for so long, disabled people have always had non-disabled experts about them.

This means I have my graduate students and undergraduates sorting out poetry, things from literature written by disabled people. But it also means they're, like, looking at vlogs, disability vlogs. They're looking on YouTube and figuring out what people are saying. They are paying attention to blogs that disabled people write because not all disabled people have access to publishing infrastructure in the way we might expect, especially if you're not a white disabled person.

And some of the work they do will go into our outreach in terms of pedagogical materials that might make their way into other classrooms. So say you're teaching an intro engineering course and you really want to look at prosthetic arms — and I've seen this happen in engineering classes: they want to make and develop prosthetic hands, you know, as a good project for students to engage in — and for people who haven't encountered hand amputees or, you know, are imagining what it would be like to lose a hand or to be missing a hand ...

I mean, often they think of it as tragic and they think a person must really want an object that is hand-like to replace a hand. That's not true for a lot of arm amputees. What we find is, you know, people like a bicycle arm so that they can ride a bicycle, like something that grips to even you out so that you can turn a bicycle a little more easily than you can if you’re not using a prosthetic arm. The sort of life hacks that people have already developed might make it so ... like, a prosthetic arm’s not a goal, a prosthetic hand’s not a goal for them.

That's just a fascinating rundown of the amazing set of elements involved in the project. You used the term “techno-ablism” which I believe you coined.

Yes. So, I coined the word. I think a lot of people have noticed this trend. Sometimes — so, ableism is bias against disabled people, discrimination against disabled people, or the assumption that disabled lives are less valuable, more tricky, like, problematic in particular ways. So techno-ableism is the idea that sometimes ... sometimes when people are making things for disabled people, they think they're being helpful, and they think they are empowering disabled people, when all of their rhetoric points to disability itself as a problem, right?

So they see themselves as helping people normalize their bodies in ways that assume that disability is always bad. That you should try to be as normal as possible gets reiterated in this technological narrative that the engineers are telling themselves, or the designers are thinking about.

And this can be really hard to encounter as a disabled person, or a newly disabled person as you're trying to adapt, or if you're just, you know, if you're disabled from earlier in your life, like, just having an average normal life, right? If people are always encountering you as an object to fix, that tells you what they think about disability, even though they're using the rhetoric of “We're going to empower disabled people by giving them the appropriate tools.”

Well, you probably don't know what's appropriate and what's empowering, if you think all of the solutions are technological, right? So this is really about elevating disability narrative as knowledge about disability and respecting disabled people as people who actually know and can give better voice to what they want. We see this a lot with narratives about exoskeletons, right? So I really enjoy disability Twitter, which is to say someone will post the next “life changing exoskeleton project.”

This happens every few months. Some university class will develop an exoskeleton or a stair-climbing wheelchair or something that gets, like, some media and PR attention where people are very excited, and disabled people react on Twitter like, “Oh, it's another one of these.” Like, “They think they've done something new.”

But also a lot of wheelchair users don't necessarily want an exoskeleton, right? Exoskeletons seem like the solution if what you think is a problem is a disabled person's body and not our infrastructure.

That's fascinating. I think it kind of draws attention to a general problem with some of the research approaches to what are called the grand challenges and devising medical technologies to meet what are seen as some of the most acute physical conditions, [which] often do not take into account precisely what your project is designed to take into account until late in the game, so that you have sort of ethics, or a larger sort of social context or infrastructural perspective, arriving late in the game.

And it seems to me that part of what is suggested by the way you’ve designed your own project is the importance that the humanities plays in the early stages of research projects that might appear at first glance to be outside of the humanities.

Yeah, so I think humanities should play a much larger role in everything. I think the way in which we've talked about STEM as being important has taken out a lot of the value for humanities being integrated all across the board as sort of just your basic liberal education [Amanda Anderson: Right], which of course would include the sciences and things like that. And I'm worried with budget cuts coming up that we're seeing in higher ed that we'll see this shrinking again.

Asserting humanistic knowledge as fundamentally important to the projects of science and technology, I think, is part of what I'm saying with the work I'm doing — but is fundamental in research all across the board when it comes to different technological projects that are underway.

Let's turn to the pandemic for a moment, because that's a sort of very powerful context for all that everybody's thinking about these days. There have been some important articles in the media about the issues surrounding disability in the context of COVID-19, and one central issue has been a casual and chilling tendency to discount lives that are seen to be worth less than others due to age or disability.

You've written about something else that I found really powerful because it cuts to the core of some of what we might call the delusions of ableism. In a recent essay in Nature, you describe ways in which disabled people are expert in devising ways to accommodate limited mobility and unpredictable disruptions. Explain how you see the practices and insights of the disabled community as having the potential to provide a leading role in responses to the pandemic and how we might work toward a better future in a post-COVID world.

Yes. So, I mean, I think about part of how that's phrased. When you talk about limited mobility, we are all limited. I think most of us aren't made to think about it all the time, which is to say I cannot fly, right, I have limited mobility. I cannot have any choice about how I get myself different places because, you know, my body is not like that. I'm not a bird. There's ways in which thinking about things as limited is in a particular context. And disabled people are often faced with these contexts in which we have to view ourselves as limited.

So I think one of the things that you get from the disability community, just because we encounter these obstacles all the time — and I don't think this is just about physically disabled people, even though, you know, so far I've talked about prosthetic hands and wheelchair users. This also is true for people who are neuro-divergent, who encounter hostile environments. You know, if the environment’s overstimulating, you can't spend as long in it.

If there are fluorescent lights and you get migraines, you're going to have a bad day, right? And you’re going to have a bad day because of the way the world is set up for you. So you'll learn lots of hacks, tips, tricks. You find a community and figure out what works for other people. So we're used to sort of swapping, you know, what works for us, what doesn't.

I think about this a lot with the amputee community — like, people will get an amputation and you have to figure out how you get into the shower again, right? How to use the bathtub when you go and you're traveling and you're at a hotel and it's not a circumstance you've ever encountered. It involves a lot of just everyday problem solving. This isn't just true for amputees. I say it because I am an amputee, so I had to think through these particular things.

But you know, this exists for other people, like, well, what sort of lighting do you bring with you? Do you need to bring a stool if you're a little person and you're encountering, you know, a particular hotel situation? We're used to navigating new and hostile places and, you know, finding ways to be places that no one expected us to be before.

So much of what you're saying about the kinds of experiences that have honed the strategic and, you know, kind of self-care skills of the disabled community would be so well used in all the task forces that universities are appointing right now to deal not only with the current crisis, but the expectation of an ongoing and continued crisis, and it just seems to me that everything that you've just said is a very strong argument for bringing people from the disabled community into the planning for the current crisis and what faces us in the future.

There's this ACAA, Accessible Campus Alliance — I'm missing one of the A's. I know some of the folks involved in it who have these recommendations for universities. And one of the things I really respect about the work is they talk about how we're all vulnerable, but not equally so. So, particularly when talking about COVID-19 — and this relates back to the casual and chilling tendency to discount lives that are seen as worth less — the ACAA document on reopening campuses talks about how the people who have been most harmed by COVID-19, that have seen deaths in the community, aren't just disabled people, but Black people and Indigenous people as well as people in nursing homes.

So, you know, there's a reason the disability civil rights movement had a slogan that goes “our homes, not nursing homes,” right? We know in fact that the conditions of nursing homes are often ones that put people at risk.

That's incredibly important to take that wider perspective. You know, as a last question, I’d just like to explore another concept that's been very important to you: crip time. And I think that, you know, part of the insight that people with disabilities bring to their response to the pandemic has to do with a kind of expansive and adaptive and also sometimes estranging experience of time.

Now, many people in the context of the pandemic have said, “Boy, time seems really weird right now. I never know what day it is. Sometimes I even forget what season it is” — and people remark that. But there's been this concept at play in the disability community: crip time. Maybe you could just say a little bit about it and why and how it resonates with some of the experiences within the pandemic at the current time.

Yeah, I love crip time. Alison Kafer and Ellen Samuels have developed a lot of work on it, but I love that we have this term. And crip is of course a play on the word cripple. Disabled people are reclaiming the word crip like the word queer. So crip is this word that we sometimes use in prideful ways now, right, that we've reclaimed this, and “Yeah, it's crip time.”

You know, crip time really speaks to the fact that our lives don't always feel linear in terms of time. Some of us age in different ways. Some of us experience, you know, hospitalizations and disruptions. And if you ever spent any extended period of time in a hospital, time feels weird there, too. So, that experience of hospitalization and time, but just being out in the community and your body being read as older than it is because of the technologies you use.

And a lot of times we talk about crip time in very joyful ways, right? And then, you know, I don't want to say that being disabled is the best all the time, but being nondisabled is not the best all the time either, so I wouldn't make that assumption about anyone. But that we're proud of the ways in which we can bend time and how we can make use of our good days and, you know, still love ourselves on bad days.

Right, I think there's this idea of productivity that you have to be on all the time. And you know, I think about this as a liberal arts scholar all the time, like, you know, you’ve got to have so many publications by tenure. I think all of our clocks operate in this weird sort of running to catch up. But crip time lets us forgive ourselves and recognize that we didn't need forgiveness just for having the bodies we have and that it's OK to rest when you need to rest. It's OK to work when you need to work. It's OK to phone a friend when that's what you need.

And that there's this sort of understanding among disabled people that it's not going to be “all systems go” all the time. And that we can celebrate that, you know, sometimes we do things in asynchronous ways. We figure out how to do them together, right? This sort of adaptation that we do in concert with one another.

Yeah, crip time can refer to this as just a general phenomenon, and I really love the way, particularly ... I mean, I'm not very poetic — I love the way crip time is discussed by some of my disabled peers in the work they write and the prose they use. I'm never gonna be as eloquent as they are about it. But it is this concept within disability studies that I feel is so powerful, and it really recognizes that we're valuable no matter what state we're at.

You know what's wonderful, I mean, that form of wisdom. That's really what I see you're describing here. That wisdom is something that I think a lot of people right now are struggling to communicate to their loved ones and their communities. And there's a resource for everybody in the disability discussions around these issues. Thank you so much for speaking with us today. It's just been a pleasure having you on the show.

Thank you so much for having me, Amanda.

Thanks for listening to this episode of Meeting Street. We hope you enjoyed hearing about the rich forms of thinking and community building that characterize the world of disability studies and disability activism at this critical time. We hope you will join us again for our next show.