Episode 63: Sara Hendren
Interview Date | June 19, 2020
JILL: Welcome to the DisTopia podcast, where we look at Disability from the inside out. [peaceful music fades in] My name is Jill Vyn, and I’m the cohost of this podcast with my friend and colleague, Chris Smit.
What you are listening to now is the first of two interrelated components of our My Dearest Friends project, both of which have been generously underwritten by the Ford Foundation. The My Dearest Friends podcast, which is produced by DisTopia, is a series of recorded conversations with Disabled people about their individual experiences with the COVID-19 pandemic, and the personal, cultural, and political alterations it has triggered. These informal conversations give our guests the opportunity to share personal experiences of sheltering in place and to engage in conversations around deeper questions raised about the value of Disabled people, the core values of the Disability culture, as well as our hopes, fears, and strategies for living an authentic and pride-filled Disabled life.
The second component of the My Dearest Friends project is created in partnership with Disabled artist Oaklee Thiele, who is creating black and white illustrations that represent our collective response to our new and uncertain realities as a Disabled community. Designed as an open invitation to the Disabled community around the world, we invite all of you to participate. More information can be found on Instagram @MyDearestFriendsProject, Facebook, and on our website, DisArtNow.org.
As is true for many of you, our desire for this project is to share our experiences as a Disabled community, to disrupt ableist beliefs, to celebrate a culture whose lived experience of Disability necessitates flexibility and creativity, and to validate Disabled voices and perspectives in the midst of the COVID-19 pandemic.
[peaceful music slowly fades away]
SARA: Been a long time, friends.
CHRIS: Oh, my gosh!
CHRIS: How you doing, dude?
SARA: [chuckles] What does a person say to that?
SARA: I think it’s just like every emotion, every day right now. That’s, I think, the thing. Despair and the glancing light of hope and the long view and also the eternal now, and you know?
CHRIS: Mmhmm, mmhmm.
SARA: How about you all?
CHRIS: [clicks tongue, takes a long pause] That about wraps it up. [laughs]
[lounge-y music break]
It’s great to be here. My name is Sara Hendren, and I am an artist and a researcher and writer. And I teach Design and Disability and human-centered kind of engineering practices at Olin College of Engineering, which is a tiny little kind of laboratory school for engineering outside of Boston, and been there for half dozen years. And I also am the parent of three children, one of whom has Down syndrome. And so, I’m both personally and professionally invested in the way the shape of the built world tells us something about how we can functionally get around and what we have access to and where the barriers are. And I’m also interested in the way the built world, all of our built stuff—the gear on our bodies, the things on our desks, in our homes and in our streets—the way all of that stuff also holds significant symbolic weight about how we talk about and think about each other, what we make sense of, and who we are to one another. And design is the subject of this book that I’ve written that’s come out in August from Riverhead Books. And it’s called What Can a Body Do? How We Meet the Built World.
I tried to write something that I hoped would be a primer for people who needed it and maybe some new stories or examples for folks who already feel like they’re part of the Disability community. So, it is about that moment in Design and Disability, about the kinda, if you slow down the tape, what’s the moment where the shapes of the built world come up against atypical bodies, people who identify as Disabled in lots of different kinda ways? And to me, those encounters and the creative urgency of Disabled people is the most interesting moment where bodies meet the built world. To me, it’s the most interesting. I never get over it because it is both inventive and really politically important. And so, those are two things that I find people tend not to hold together closely enough. And that’s what I’m trying to do in this book.
The book is a mix of reported narrative, so taking the reader with me on a kind of travel tour of these different kinda places. So, we look at the Adaptive Design Association in New York City that builds cardboard carpentry furniture for Disabled children, mostly, all over New York City. And we also look at the campus of Gallaudet University, which is designed in part under principles of Deaf space. It’s like how to think about buildings and deafness. So, it’s a mix of that tour guide kind of dropping in on people and the places they live and the things that they build for themselves and in partnership with other people mixed together with some of these ideas in Disability Studies that are translated for the general reader to try to help people understand what do we mean when we talk about adaptation? How is it that a building is doing what environmental psychologists call becoming an action setting? So, how is it that we move in our bodies in a space, and how do we know what to do in a space? And notions of real assistance and interdependence and this idea of crip time. So, it’s meant to be a short but hopefully packed set of both people’s stories and ideas mixed together.
So, it’s structured deliberately to address the idea that disability is everywhere and also that design is everywhere. So, it starts deliberately structured in this way that expands out from the body. So, the first chapter’s called Limb so it’s all about prosthetic limbs. And that tends to be what people think of when they think of Disability and Design: just all of the replacement parts and kinda cyborg-bionic future prosthetics. Then it goes from there one scale out each from the body as the book continues. So, the next chapter’s called Chair to kinda get people oriented toward the furniture in their houses. The next one is Room to talk about architecture. The next one is called Street so that takes us out into the built world.
And then finally, the last chapter is called Clock, which is not a literal object, but the idea of the object, which is time. And that is how the time in our lives is also designed, in the sense that it is measured and standardized, and it arrives in our lives in a way that was intentionally designed, that is by industry. Certainly, the way we live by the clock is pretty much entirely an industrial invention. So, it’s about how we order our worker time and our bodies as responsible for the work that we need to do and therefore the work that kinda makes us who we are, by implication. Not in fact, the seasons or agriculture or things like that. That the mechanical clock is an invention of industry. And what that means is that bodies also come up against those expectations of time in lots of different ways. So, the normative 40-hour workweek and all that it implies meets our bodies in ways that fit and that do not fit profoundly. Clock is this moment where I wanted to show how design meets the kinda realm of systems, like the things that we can’t entirely see.
I also wanted to use Clock to get into the way that developmental disability meets design because I have a son with Down syndrome and several relatives on the autism spectrum. And because, as a person working in an engineering school, folks have often asked me, “Why don’t you work on mental health issues,” for instance. And it’s true that I have mostly worked on sensory or mobility conditions. And those are, in an engineering sense, kind of easier to work on. And it was really important to me to show the ways that people like my son move through the world, mostly in a way that prosthetics actually don’t really address, that gear actually does some interesting mechanical things. But ultimately, that the human worth of a person with Down syndrome who is not gonna conform to the economic expectations of that clock is at a disadvantage in the world, I mean, to say the least, right? And we see this not only in employment numbers, but just in people’s expectations of who people with Downs’ syndrome are and what they contribute. And also all the ways that we manage people’s lives with developmental disability outside of the normative clock.
And so, in that chapter, I talk about all the different kinda designs that I’ve seen for, I mean, the design of the institution, which was an architectural way of managing developmental disability for a long time: that kinda ugly history of separating and managing people who fall outside the norms of the clock. And then I try to skip forward to today and think about what are the designs that you make to try to bridge that gap a little bit? And I follow, in particular, a service organization called EPIC that’s a little bit like AmeriCorps but for young people with disabilities, both physical disabilities in some cases, and developmental disabilities. And it’s about the volunteerism that those young people do for other people, rather than only being on the receiving end of the volunteerism of the world. And I try to think about the ways that those folks showing up in public and naming for themselves how they wanna be might be a glimpse into the future of a different kinda clock.
[lounge-y music break]
CHRIS: In that chapter, you advocate for an understanding of crip time. I wondered if you might tell our listeners a bit about that concept, but then also your use of that concept.
SARA: Yeah. So, this was an example where like Disability Studies as a long-active field has given us this theoretical term that you just named, crip time. And I think I really wanted for folks who are not gonna go deep into Disability Studies scholarship to understand it because it’s so powerful and it hands us something really useful. I mean, I have heard among my Disabled friends the use of crip time in a very casual, kinda slangy way to talk about just the disjuncture between how long it takes to get to the platform of the train station or how long it takes to get to the bathroom or these moments where, again, there’s what Rosemarie Garland-Thomson calls a misfit between a body and the world. And sometimes it’s not about the shape of your body; sometimes it’s about the time it takes to do the things that you need to do. And so, people will say, “I’m on crip time,” which means I’m gonna be late for dinner.
But also within Disability Studies, there has been a long, much more foundation-shaking use of the idea of crip time, and that is about the constraints of time on which Disabled people live. That is, again, their bodies are, for physical reasons, developmental reasons, or other reasons, not gonna easily conform to the 40 hours of productivity work week that is, again, set up as a standard for all of us, a quite rigid standard for all of us. And crip time is a way of thinking about the way if Disabled bodies show that actually, that standard of time is not really friendly for a lot of us. And so, Alison Kafer is a scholar that I lean on a lot in that chapter to talk about how crip time is an invitation to think about the limitations of economic time and to think about what’s the time in our lives that we wanna measure, right? And there’s a deeply internalized way that non-disabled people kind of conform and accept and in fact, jump how high to the expectations of economic time. And disabled people have long said, like, “I’m on crip time, so my body is already at odds with this.” And it means something for everyone.
Philosophically, it means actually, that we should be looking at the clock, maybe, as the culprit here instead of our bodies as ill-fit to those expectations and demands. And so, Kafer says, and I quote in that chapter, that crip time is like flex time that we talk about expanded and exploded. Like the idea that we have to accept and adhere to economic time is only one way of organizing our lives. And if we could see it for what it is, we might unwind our sort of endless obedience to it. And it’s there for everyone.
I mean, we are seeing it under COVID for sure. We are seeing a kind of mass crip time invitation here but partly imposed upon us. And we don’t have to romanticize about that. It’s a really difficult situation to live in here. We ‘ve got a real contagion that everybody wants a vaccine, a cure for tomorrow. So, it’s highly specific in a way, COVID. Nonetheless, it is an invitation to be thinking, OK, if the norms of the world are now no longer available to us, what other ways of being are available? I mean, that’s the moment where that’s the inventiveness and the urgency that Disabled people already know really well and is on offer as a source of knowledge to the world.
CHRIS: I kept thinking about the concept of guilt and the concept of guilt that we continually here, on this podcast, and in COVID especially a sort of celebration by some of our interviewees who have said these last two months have been very hard, but they’ve also been wonderful. Because I am free, right? I call the shots, so to speak, right? And so, that guilt, it makes me think of the historical guilt that is in the psyche of disability. And so, when you were able to articulate crip time like that, I was thinking exactly what you just said, that it’s a Pandora’s box, that have a whole bunch of historical implications for Disabled culture. And I think that that’s just really powerful. Yeah.
SARA: I think so, too. And I think it’s one of the ways, one of the most powerful ways, that disability is a knock-on not just, it’s not just that it is a universalizing identity category into which we will move in and out of over the course of all of our lives. That’s important and powerful. But crip time is like an analytical category for us to be rethinking the shapes of the world in the same way that gender and race offer us analytical tools, right? Crip time is this kind of like, whoa, that’s a really powerful way of just asking ourselves, a lens for asking ourselves, what do we accept it as normative and even virtuous and right that actually is a designed imposition that has economics and economic worth at its root, when we could access a different form of human worth and dignity, right? And the horizon for happiness and well-being and flourishing, like all those deep philosophical traditions are available to us, but crip time is one way to help us—it’s like the sharp end of the wedge to help us—kinda wake up from the stuff that we’ve taken for granted. And it’s with disability as its resource.
JILL: We actually incorporated crip time into our strategic plan as an organization. And we have a propensity towards action, yet we function on crip time. We’re flexible, yet we get a lot done. And so, “In both the organizational processes as well as the organizational culture, DisArt values permission to re-pace work when bodies or minds require additional time to meet accountabilities and deliverables. Patience and empathy in these times are grounded in trust and acceptance and a core belief that professional accountability will not be risked by meeting the needs of our bodies and minds.”
SARA: Yeah. Wow, that’s really beautiful.
CHRIS: But it was also really difficult to get to that point. As co-directors, we had to figure that out ‘cause my body is like, pppbb. You know, whatever. It does whatever it wants to. But there’s still this sorta drive that clock, right? Yeah.
JILL: And the guilt and the trust, right? So, if you’re someone who’s lived a disabled life, Chris, if you’re feeling comfortable to speak about, is just the feeling left out to begin with. And then when things come up, you need to listen to your body or your mind, and it reinforces that you’re left out. To know that you’re still important in the process, even if you’re not physically present in that moment, if that makes sense.
CHRIS: No. Yeah, I mean, to me—
JILL: And the guilt is not there.
CHRIS: Right. It’s not only about being left out, but it’s also about thinking that your influence is dependent on the energy that you expend, right? And so, that for me is a huge one. It took me a long time to sort of be able to say, OK, the only way I can do this work is if Jill and I and our board understand that unpredictability is just the name of the game. So, that really resonated with us when we read that in the book.
SARA: I’m glad. And I think, you know, there’s something particularly pernicious, I think, for parents of kids with developmental disabilities. Because I think so much of the fight—worthy, understandable fight—for inclusion involves all this advocacy for the means and methods of bridging, right, non-normativity and the world. But there’s still an expectation, I think, behind that, that inclusion should bridge that gap to this worthiness of a certain kinda job and a certain kinda economic standing, right? So, it’s a real catch 22 when I think about especially about developmental disability and about just being out of sync with that clock. And what is it that we’re fighting for? What exactly, right? What is a good life? What is a contribution? What’s the role of powerful relationships? As opposed to, Chris, what you’re naming, like a certain kinda timeline, a certain kind of expectation about how long things will take?
[lounge-y music break]
And in our case, it’s thinking about our son, Graham, like what does thriving look like? What is it that we want, not just for him, but for our neurotypical children too? COVID, again, has been, I think, for a lot of parents, a moment to ask themselves: are we positive that filling our lives with this kind of enrichment and kind of endless optimization of self, are we 100% positive that was really the desirable life? Again, I leave it open as questions ‘cause it’s unresolved for me. And it’s something that I see in the culture of parents that I belong to, in kinda Special Ed.
CHRIS: It makes me think about we try to use the word “accounting for” rather than accommodating. And again, in the context of our conversation right now, accommodation is usually thought of as a series of actions that allow Disabled people to—
SARA: Not be behind.
CHRIS: Yeah. Yeah. Yeah. Not be behind, but to achieve what is expected of other people. When you account for somebody, you are automatically respecting their lived experience and allowing them to, for example, enjoy a museum in the way that they choose to, right? You’re accounting for that sort of drive and that identity. You know, accommodation is very attached to that feeling of guilt or inferiority or whatever. So, it’s just really striking, I think.
SARA: That is really beautiful language. I think that there are plenty of people who are doing, with their actions, that accounting for even while they call it accommodations. And I think the reverse is also true, right? That people would say they’re accounting for when in fact, they’re accommodating. One dissatisfaction I have is maybe a little bit of an excessive hang up on the words that we use. And the crip time chapter in the book also tries to make this clear from Jim Trent’s book about the history of intellectual disability, that words, on the one hand, do carry some meaning. And I think we should pay attention to them. And I think there’s no question that we make meaning via our language. And also, language can be a kinda cover if it’s not actually what we believe about one another. It’s very easy to be quite correct in the terminology.
I mean, I think we saw this, frankly, in the last week with people. It was so repugnant on Twitter, folks in the so-called progressive camp mocking Trump’s struggling, using a ramp for walking and his hands shaking while drinking a glass of water and the hashtag of #AdultDiapers was trending. And it was so gross. And these are like folks who are, many of them, on the left, and just the repulsion around disability became so evident. And I thought, I don’t need your correct language. I need you to actually think differently about assistance, dependance, deep interdependence that is built on dependance, that is universal. I need you to think differently about yourself in relation to others and to act differently. Do you all struggle with the same kind of back and forth about sort of language?
JILL: Yeah. We talk about language as being really key and important. And not just the words you use, but the understanding about why you’re using certain words.
SARA: That’s just it. Yeah.
JILL: And being intentional about that. And just like any entry point into understanding about marginalized communities is pausing to reconsider: Why do we have these phrases in our language? What does this mean? What is the connection? What is this saying? My hope, our hope, is for people to pause. First pause and question.
JILL: I think too few people do what you just described, Jill. Like, what is this actually mean? Like I tried to do about the word “retarded” in the clock chapter. You know, where like, oh, OK. Flame retardant, is like “retarded” is a neutral term about slowness. It’s just telling. When slowness becomes the insult, that’s what’s interesting, right? That’s the moment where you see what people really think about one another. But I find if people ask me to do a disability awareness thing or consultation, they go like, “Just tell us what the right language is to use. Just tell us what it is.” And I’m like, that’s actually, you’re kinda skipping over the only interesting part, which is like how you actually think! [laughs] I mean, I wrote this book to try to go like, you also, non-disabled person, are implicated. Here, I’m going to invite you in 10 different ways to see that and to welcome it.
There are all these like kinda mental ejector seats that non-disabled people do where they go, like, “That’s so inspiring! It has nothing to do with me, right? Thank goodness I don’t have problems like that person. That has nothing to do with me.” And I wanna go, “No!” If you actually find yourself connected in these politics, then you won’t rush to kinda going like, “Just tell me how to check the box and say the right 2020 language.”
CHRIS: It’s connected to the efficiency thing though, right, too?
SARA: That’s right.
CHRIS: ‘Cause as consultants, you’re brought into a company, right?—we do this too—you’re brought into a company. And our first, [chuckles] our first thing is to say that, “This is not a handbook,” you know?
CHRIS: “And we don’t believe in the handbooks.”
CHRIS: Because the ADA created a handbook, and look what the hell happened there. Do you know what I mean?
SARA: Right, yeah.
CHRIS: So, it’s like, [chuckling] so, the first thing that we do is we teach about disability history, right? I don’t know about you, Jill, but I’m always surprised that people— Well, I guess I’m not. It’s always meaningful to see them understand that history as part of—
JILL: I’m not surprised at all. It’s not in our history books.
JILL: Crip Camp was the first really public display of a history, right? So, I’m not surprised at all, which is why we give people grace. But once you know it, it’s really hard for people to look the other way. Or at least we hope it’s hard for people to look the other way in presenting disability as a cultural identity and forming a relationship with this understanding.
SARA: And hopefully then, what you try to display to people is it’s so much more interesting.
[lounge-y music break]
SARA: I think my chapter on limbs is trying to do that just by using objects as an index into ideas. And that’s what design is, right? It’s like the sort of, it’s material culture. That’s what the anthropologists call it. It’s stuff that speaks a lot about our assumptions about each other. And in that chapter, I try to talk about a guy who’s very successfully using the very high-tech prosthetic arm, right next to a guy who was born with one arm who has never used a universal prosthesis, right next to folks who are using low-tech limbs for free. In India, a million people now use those limbs, the Jaipur foot, alongside Audre Lord, who refused a breast replacement after a mastectomy. In other words, it’s way more interesting to just think about all the ways that people make choices about their bodies and the condition of disability when it arrives. And if we can communicate to non-disabled people, like this is just a whole repository of wisdom to think about when your body changes, what choices will you make, and what resources will you draw upon to do that? And as you say, Chris, it takes it out of this realm of being like, OK, here’s an object that I wanna make sure I’m on the right side of history behind or that I don’t get wrong and certainly that I speak about with all the correct terminology. Again, it’s like a mental ejector seat. I’m just kinda like, “Just be interested. It’s just really interesting.” [chuckles]
It’s incredibly interesting why this guy, Mike, in that chapter uses this incredible arm and how long it took him to figure out how to seamlessly turn his wrist. And then how it is that my friend, Chris, who has one arm, figured out a way to change his baby’s diaper, you know, and all the things that he does with a combination of his feet and his one hand. And what’s interesting there is that bodies are adapting to the built world and indeed to just their lives and all kinds of socio-economic, cultural, political conditions. It’s people who are doing that adaptation. It’s not the technology coming in to save them. It’s not like somebody else on the outside. It is this dance and mediation between bodies and what the world offers. And it’s not clear always which direction the adaptation is running. And again, to locate the reader who’s non-disabled or thinks it doesn’t have to do with them, the question just keeps arising. It’s really interesting what choices will you have, and which ones will you make? There’s not one way to do it.
JILL: When you talk about the two people or the three scenarios, couple of things come to mind. One is thinking about how different it is for people who acquire disabilities later in life. Chris, and his use of his, if I’m remembering correctly, he grew up without a limb, right? He was born without a limb. So, he grew up adapting and growing and not being forced by his family into one way of doing things. So, that’s a beautiful story in and of itself. And how do you help people then who acquire a disability later in life to welcome that process into their being and their experience?
SARA: Yeah. And certainly, you know, I learned from Georgina Kleege to sort of just resist, again, another mental ejector seat, which is like, which is worse or easier? Which is better or harder? That’s actually not really an interesting question. The interesting question is what you just named Jill, which is just sort of like when it arrives, which are the choices that you will make? And let’s be clear. So, we’re very much Chris in this limb chapter, who was born with one arm and has never used a universal prosthesis, but not for lack of people trying. There were a half dozen limbs made for him in his childhood and lots of doctors saying to his parents, “He really does need a replacement arm.” And it just turned out, and it could be otherwise, but it turned out in Chris’s case that, yeah, that liquid adaptation that is true for everybody was with him from the beginning. He didn’t know anything else. So, he was already adapting. He was taking a single Lego, and he would brace it against his opposite shoulder and snap the one Lego to another with one hand. ‘Cause he learned how to do the bracing work with the shoulder of his residual limb on the other side. Think how fast he’s outpacing a mechanical limb to help him do that, right? He’d just already done it. He’d figured it out. I mean, he can do all kinds of things, which, in the book, what I’m trying to say is it’s both extraordinary and utterly ordinary because Chris is a body adapting in the world.
And so, right. His counterpart, among several others, is this man, Mike, who got cancer at 14 and had an amputation. And so, he was young, but nonetheless had been a two-handed person for much of his formative life. And it took a while to do that. It also took a while then for him to, he’s had four successive arms in the course of his adult life. He’s middle-aged now. And so, he figured out along the way what the kind of mechanical limb that’s really common, that doesn’t have any electronics or parts on it, what that’s good for. It’s usually good for lugging heavy gear. And then the much more fine-tuned, some of the more fine-tuned functionality, what’s called a myoelectric prosthesis that’s wired into the muscle impulses of your actual flesh arm. And again, neither of those is worse or better. Just train your eyes always on adaptation. And in Chris’s case, all the experts, the clinicians, the engineers were rushing to say, we can save you from your body. And it turned out his body was whole and intact and had high integrity in all the ways that he needed. And in Mike’s case, it was like, yeah, I am interested in that. Let’s have this back and forth of the adaptation with the thing that I want.
JILL: But in both cases that you’re describing, Chris and Mike were part of the solutions, part of the process.
SARA: That’s right.
That’s exactly right. And I’m glad you brought that up, because maybe people know and maybe they don’t that rehabilitation engineering is the kinda research inherited legacy for all of prosthetics and so-called assistive technology. And that is a post-war phenomenon, right, that was very much designed, invented, and initially funded after World War II with a bunch of money and resources shunted its way in order to kind of repay the debt of sacrifice that folks had expended, right, coming back from World War II missing limbs and so on. And of course, that should be done. We should be giving lots of research dollars toward that effort. But a rehabilitation paradigm assumes only a loss and then recovery and a savior kind of effort, again, with an emphasis on the technology rather than on OK, what is this person? Who are they? What is it they’re trying to get done? And when and where does the design or the engineering come in and do its work?
And again, I contrast both of those with another kind of quote “limb” or appendage in Audre Lorde’s case, who wrote in her book called The Cancer Journals about losing one breast to a mastectomy and about the choice that she made not to wear a replacement breast that plenty of women do opt into. Surgically or a wearable kind of prosthesis, that is a robust kinda industry of recovery. And I can see why plenty of women make the choice to opt into those prosthetics. And Lorde, for her own reasons, opted out of those prosthetics, in part because of the way that the meaning of the world’s idea of who she should be and what wholeness was and the ideal woman and so on was also at work there.
And I find that when readers come across that they go like, yeah, you know, my mother had a mastectomy and got reconstructive surgery in that way and then asked herself 20 years later, was that for me? And again, there’s no right or wrong answer here, but there is tremendous interest if we, as you said, Jill, earlier, if we pause and say, whose meaning is being made here, right? And what is enabling and what is disabling? And what is the adaptation to what desirable life? You know that’s, to me, where it gets interesting, where the rehabilitation paradigm starts to fall apart a little bit. It’s got limitations.
CHRIS: I’ve been looking at some of the press and some of the, we all did, I mean, the imagery around the Paralympics and these sort of superhumans. That’s how it was labeled by the network; I believe was NBC. One of the interesting things in that chapters, you remind us to remember what Katherine Ott has said, which is to say we can’t focus on only the prosthetic, but we have to remember the body, right, that’s connected to the prosthetic. So, beyond the things that you’ve already said, I also think that there’s a bit of a spectacle nature to prosthetics that sometimes—I’m gonna use your word—that can become the ejector seat, right? It’s like, “Oh!!! It’s so cool that they can run, and they could do all this stuff!” [chuckles] But we’re ignoring the fact that they are a rooted human being with a body that dictates their norm.
SARA: I think that is the ejector seat of all ejector seats, Chris. I mean, don’t you find? I’m sure people say this stuff to you to sort of like say, probably people send you these links and things, to sort of superhuman— And within Disability Studies we have a theoretical notion for that, too, which is called the Super Crip. And again, it is an ejector seat by saying, oh, if I’m inspired by the ability of people to “overcome”—I’m using scare quotes—like overcome their body, then I can relax and imagine that if that change were to come my way, I would strap on the bionic replacement part and be off to the post-human future. And I would never have to confront, as Eva Feder Kittay would say, the plain facts of dependance that also gets you to interdependence. And, and the creative urgency that’s happening, you know, with Chris at the changing table with his newborn, right? He doesn’t need to be tobogganing with one arm in order to have this deeply adaptive life. And again, it’s both urgent and creative, and I want it to be seen as such. So, I think you’re right.
The Paralympics, while I love them and celebrate that kind of athletic prowess, too. But it’s one dimension of human experience. And it’s just one of the many ways that, as you said, disability is an object that gets turned like a jewel in people’s minds as this one thing, when it’s this endlessly generative and rich way of being in the world. I mean, I open the book, one of the epigraphs on the book is Disabled dancer Neil Marcus saying that disability is not just—and he would say not at all maybe—a struggle to overcome in the face of adversity, but an ingenious way to live. It’s an art and an ingenious way to live. That doesn’t mean it’s an overcomer story. It means it’s adaptive and nimble and inventive and responsive. And so, yes, at the Paralympics, and yes, in the living rooms of many people right now.
[lounge-y music break]
JILL: I’m curious, Sara, to hear how you came to gain your lens about Disability culture. Where did that start? When did that start? And you’ve address it a bit, the choice to go into engineering, which is typically seen as solving problems, but you’re offering something different for engineers.
SARA: I get into this a little bit in the introduction to the reader. But the very kind of concise version is that my first baby has Down syndrome. So, this was 14 years ago that he was born. And we immediately went into what’s called Early Intervention, which is a whole series of physical therapy, speech therapy, occupational therapy programs in order to help him with the kinda things that come with Down syndrome. So, low muscle tone and some kinda global delays and kinda mobility and stuff. And so, I started going to these clinics for little babies to do that kind of physical therapy work. And I’d never seen those settings before. So, my son Graham was doing all this, you know, like bouncy ball, fun toys and swings and things that he experienced as play, but that were also doing this kind of prosthetic work for him. And I remember being just enchanted because I was trained in fine arts and in visual culture and cultural history. I just remember being enchanted by the look and feel of those things. Like how clever to have these toys that were also doing this kinda clinical work.
But that was also a really hard time because, I guess because he was a baby, people were still feeling quite at liberty to ask me about our regimen of testing while I was pregnant. And to have a baby with Down syndrome is to be wearing a fairly public white flag of choice about, because Down syndrome, of course, is identifiable in utero. And the majority of people in most countries terminate. And so, people oddly felt this liberty to ask me, “Didn’t you get tested?” Like that was sort of the undertone to a lot of their questions, which was hard to take, right? ‘Cause I have my baby on my hip, right? This baby, right? Many gifts. Like just shining and whole and joyous and people asking me this thing as though he were a thing, you know. So, I couldn’t really reconcile the wonder of those clinical settings with the sorta limitation of people’s language about my child.
So, I started to think, what’s the medical language that is happening in a lot of stuff, a lot of prosthetics that’s driving the way people think of my son, Graham? They primarily think of him as the diagnosis. They think of him as a, as they say, “a Down syndrome baby.” And so, I started to think about how, again, visual culture does functional stuff and also makes meaning. And I discovered this book Design Meets Disability by a man named Graham Pullin, an English designer, that helped me kinda piece some of those things together, like the way that design is doing cultural work. And then I also, a total revelation for me was discovering Wendy Jacob’s partnership with Temple Grandin. And I detail this a little bit in the book on Street about another project of Wendy’s. So, Wendy’s an artist who, at that time, was at M.I.T. working with a lotta scientists and engineer types.
And Temple Grandin, your listeners may know, is one of the most famous self-advocates, autistic self-advocates, and is also an engineer, works in animal husbandry. Grandin had designed a hugging machine, it’s what she thinks of it as, for herself. So, she has a kinda chamber, a wooden chamber, that gives her the proxy for an embrace or a hug. She’s not interested in getting that from human contact. But here was this mechanical way that she could get it. And Oliver Sacks had profiled Grandin a long time ago for one of his books and in The New Yorker. And Wendy Jacob was so interested in this. And together, they made a series of chairs inspired by that hugging machine. So, they made these club chairs, kinda soft upholstered chairs, that, when activated with a foot pump, would reach up around and give you a hug. So, anybody would sit in them. And to me, this was just magical. I just could not get over it because here was a kinda therapeutic object that Grandin had created for herself. And then they made it into this poetic object that anybody could encounter in the gallery. Why shouldn’t your furniture actually reassure you a little bit? Like, why not? Why couldn’t it do that?
And to me, that was the only way to resolve that disjuncture between all this practical gear that Graham was getting—and all good and all that—and then the profound way in which he was just being scripted as like a subhuman by so many people that I encountered. That partnership with Grandin felt to me like resolving pragmatics and poetics, you know. So, usefulness and the magic of symbols. Or what in the book, I talk about John Heskett’s terms for design: utility on the one hand and significance on the other. And I just thought, I need to be part of that. I need to do that.
And so, I started writing a lot about those kinds of prosthetics. I went back to grad school eventually. I pitched a class called Investigating Normal, which would make prosthetics, some of which were artful, some of which were useful, down at RISD. And then this job opened up at Olin College, and know I didn’t if I could do it honestly. But I felt, I started to feel like if I wanna make a difference in how technology is actually framed and deployed, I probably need to be actually in the laboratory. I probably need to not just talk about it and not just make art about it, even though I make some art, but I probably need to be in there where the stuff gets made. And for me, it’s just as somebody who can barely do high school math, it’s just really fun to be in the foil of this very STEM, you know, tech belly of the beast. Because for me, it’s a really nice muse, ‘cause I have to ask people all the time, like, “What is momentum again? Can somebody explain the physics of sound?” And people always do it. But I have something to say there. And I’m a humanist, I think, ultimately at heart who is interested in technology.
CHRIS: Early on, when you first started to come to Disability Studies conferences, which is, I think, where we met, how did that transition go for you? Did you feel welcomed by the community in Disability Studies? Did that go smoothly for you?
SARA: It actually did, I think in part, ‘cause I was lucky to meet Georgina Kleege, Rosemarie, Cathy Kudlick, Sue Schweik, like some of these real just absolute powerhouse senior folks in the field through this one residency that I had early on, 2011. The University of California Institute for Research in the Arts had this residency, and I met all these Disability Studies people and a bunch of artists. And they were so welcoming and so open and generous that it set this tone that I didn’t feel— But are you asking, Chris, about the tension of being a non-disabled person speaking in Disability circles? ‘Cause I certainly think about that.
CHRIS: Yes. I want our listeners to know that path and how to get into that world. But, yeah, I guess maybe tangentially I’m interested in that.
SARA: I do think about it. And I think we’re in a moment in sorta academic theory and also in popular culture, where people are asking about the relationship between identity and authority. I try to be really clear in the book and in the working out of the book that, as you know, the book is Disabled people speaking in their own voices and also citing Disability Studies scholars, many of whom are also Disabled people. And I try to make a distinction there that people have helped me think through that Disability as an experience, of course, belongs to Disabled people in their own voices. But that Disability Studies is actually a form of knowledge, which is a different thing from experience. And the knowledge is, I think, the thing that is offered and shared in that humanist impulse, right? Again, in the same way that everyone should be reading Critical Race Studies and Critical Gender Studies and things.
I have also given up and sidestepped opportunities to connect with people via my son’s story. I don’t write a lot about Graham. I don’t post his image on my public social media sites ‘cause I don’t think that story really belongs to me. But there’s a cost to that because the Down syndrome community is super organized. And I follow religiously the stories of young children and to adults of strangers’ kids with Down syndrome and adults who have their own Instagram accounts, for example. So, I think I’m missing out on those connections, but I can’t quite get around Graham’s, you know, he’s 14. He’s in a kinda liminal space about consent and authority and authorship and stuff. You know, Disability circles have nothing about us without a slogan for a reason, right? And parents have sometimes been on the end of institutionalization at worst, but also just speaking for their children. I have to be wary about that stuff.
And I also think that any justice horizon needs lots of voices standing at lots of signposts along the way to try to organize people, which is, so Jane McAlevey, the great labor organizer, says there’s a difference between mobilizing folks and organizing folks and that folks tend to get these confused a lot. Mobilizing people is speaking to a group of people who already agree with you and mobilizing them to take some kind of action. Organizing people is actually finding common cause among people who disagree and are profoundly pretty different. And I think I’m on the organizing side of trying to say disability actually does have reach into everyone’s life. No politics is actually accomplished without non-disabled people coming alongside. And if you’re gonna do that, you gotta have translational tools along the way. And I think I am not trying to pose as a person offering commentary about Disabled experience. I am trying to translate a whole body of knowledge for folks who are on the beginning moment of being organized within disability rights and interests.
[lounge-y music break]
JILL: It comes through very clearly in your book that relationships are key.
SARA: Yes, that’s right!
JILL: So, when you talk about organizing or translating, you depend on the relationship to make that possible and the trust that’s formed between you.
SARA: Jill, I think that’s the most important thing of all [chuckles]: a relational model of change, right? Including poking at structural change. I think that’s really true. But, Chris, how does all this land for you?
CHRIS: For us, as an organization led by a Disabled guy and a non-disabled woman, we’ve had to deal with that pressure as well. But what Jill just said is what we go back to time and time again, which is the idea that cultural change is always intrinsically attached to relationships, right? I mean, that’s sorta how we think about everything we do. There’s a lot of murmurs and little side glances at conferences and stuff. And I’m just like, fuck it. We gotta hit it right on the nose and really talk about interdependence as the only way that this movement is gonna keep going, so.
SARA: That’s right.
JILL: But I think that if, for me personally, my voice is not gonna be the loudest in the room because I don’t have the authority to be the loudest in the room, on certain things, but not on the Disabled experience, right? There’s certain things where I can have a louder voice. I think that’s what your book is. I mean, you have authority based on your observations and your interactions and your relationships with both Graham and the other people that you mentioned in your book.
SARA: Yeah. And I mean, it is professional training in design, right? I am trying to offer that to folks. But I actually labored a lot, Jill—in a way that I suspect you do in live and in meetings—I labored a lot at the sentence level to keep going. Like, am I sure that this is representing people in a way that preserves their own authority? Or how many more quotes can I get in here? And how can I make sure, right, that I’m not interviewing the non-disabled leader of the thing but also putting people in, in their own voices and the way that they look, speaking to their own experience. And just being really careful to the cite and to credit and all that stuff. I do think it’s a tricky matter.
I also, though, think that the great humanist saying is like, nothing human is alien to me, right? And I think sometimes people cast an automatically suspicious eye on what it means to be interested in other folks. You know, like Anna Deavere Smith, one of our national treasure theatrical actors, right, makes it her business actually to learn the bodies and the voices of people who are deeply unlike herself. And she will say the thing that motivates her is, “I am passionately interested in that which is not me.” And we celebrate that from Anna Deavere Smith, right, this kind of interest in other people, right? And Zadie Smith says this, too, that actually, the role of the novel is actually to activate our interest in other people, not actually purely to speak one’s own truth full stop. Yes, one’s own truth is in there, but the whole exchange of culture is actually to meet one another. So, I do worry a little bit about some of the kinda rigid reliance on identity as the only locus of authority, because I worry about the breakdown of that exchange finally, which, again, is a mode of relationship. I don’t know. Chris, how do you think about all of that?
CHRIS: Yeah. I mean, for me, it’s always been what Bakhtin says in Art and Answerability: the author as aesthetic hero. You know, he talks about the presence of the other in front of us is not only to help them fulfill their horizon, but for them to fill our horizon as well. And that’s exactly what you just said. I mean, it’s this idea of my knowledge of me is dependent on your knowledge of me, and your knowledge of you is dependent on my knowledge of you, right? And that’s sort of that ubuntu idea, I mean, the African ubuntu idea as well is in there. So, that’s how I tend to navigate it. And I get a little feisty. Like if someone’s gonna call out Jill on something, let them do it in front of me, right? And I’ll just, you know, I’ll go off. But Jill, it’s like that, remember when we were like, sometimes you have to be really complicated in your explanation of disability, and other times you just have to be simple as fuck and just be like, “Look, this is how it goes.”
JILL: Yeah, but if you talk about people’s experience with the invisible or non-apparent disabilities or even people needing to prove themselves [chuckles], you know, or out themselves just for the sake of other people giving them permission to be themselves. We’ve interviewed people who have sensory processing, and the act of going to the grocery store, non-COVID times, completely wipes them out. The act of going to the grocery store during COVID times, because it’s a lot emptier, is freeing. And yet, that same person would have to prove that they’re Disabled enough to need any special times.
I’ve talked openly about experience with depression. I don’t consider myself, maybe during that time I’d consider myself disabled by it, but I don’t know. But I have that experience. But I don’t wanna have to feel like I have to tell it every time, if that makes sense.
JILL: Just like someone with an invisible disability doesn’t need to prove their value in understanding something.
SARA: That’s what I mean. I think if people are resorting to disclose in order to make claims of authority, I think that that can result in a negative experience for everyone. Why force the disclosure? But what’s behind that is, I mean, again, it’s especially ironic in disability because one of the chief kinda mantras of disability is that disability actually does belong to everyone, comes for everyone, is in the universal human experience, in the lifespan, right, from entering life and often in exiting life. We kinda can’t have it both ways, right? Where you say, well, it does come for everybody, except you don’t get to say anything, Jill, unless you tell me, “I had an experience of depression that was disabling, and therefore I have got my certificate here of trying to show my interest and also to help make some meaning.”
Obviously, all this depends on our deep humility and modesty and yeah, not speaking for other people and not making claims of possession. I’ve just told you, all the decisions that I’ve made around my son’s story in trying to make sure that I’m steering clear, right, of possessing and overriding his way of being in the world. Yet I think sometimes, just from a couple of different directions, we can stumble in our attempts to do the thing that we’re trying to do, right? Which is to, again, in Jane McAlevey’s sense to organize ourselves, not to be in lockstep, but to organize ourselves across our differences to advance a politics that actually makes room for assistance, interdependence, non-economic time, adaptation at the core, low tech and high tech, flexible schools, all the things that we want. That takes organizing, not just—
JILL: All the things we want and all the things that’ve been asked for.
SARA: Yeah, that’s right.
JILL: [chuckles] That’s what we keep hearing over and over again is, “We’ve been asking this.” Which goes full circle back to your conversation about time and productivity and how do we place value on people’s lives in that way?
SARA: Well, and what James Trent says, which is so depressing, just like so much change and so little progress. You know, we’ve called it a million things. And yet, and he says that the ends have been collapsed to the means. I think about that all the time, right? That all our accommodations in schools, all of the legal kind of code compliance, does that yield actually the thriving future that those were meant to, right? They may be necessary, but not sufficient. I mean, believe me, I’m glad all the time that I’ve gotta legally actionable guide. But I’m still asking all the time, to what end? To what end? For what kind of job? What will be enough, you know, for somebody to see my son with the dignity of his interdependence, what he offers the world and what he receives? It’s not clear to me that X amount of legally-mandated inclusion efforts equal progress. I’m not sure. I’m just not sure.
CHRIS: I’m fascinated, too, by this idea of non-apparent or invisible disabilities having to prove that you’re Disabled enough. And then if you look at visible disabilities, it’s that you can prove that you’re not Disabled too much, right? And I find that juxtaposition just completely fascinating.
SARA: I do too. And as you say, it’s a double bind. I mean, one direction or the other, this kind of disability or unasked for and inescapable visibility. And it’s funny because people have always asked me in the context of the laboratory and making prosthetics, should we want the kinda prosthesis or design that smooths over difference, right, and the kind of Apple-ification of the prosthetic limb and the super razor-sharp wheelchair and so on in order to do that smoothing work? Or should we be loud and proud, right, and insist on the kinda disruption of non-normativity. And here again, I think we can have lots of those things. We can have both of those things. I just don’t want the trap of either I’m visible no matter what I do, or I’m endlessly invisible and I can’t get the things that I’m asking for. But I try to show in the book all the different ways, low tech, high tech, very in your face or very smoothed kind of invisible ways that people arrange their built environment and the stuff they wear to bridge one way or the other. But I don’t like traps, right?
[lounge-y music break]
CHRIS: Let me ask you a real-world question. So, here’s a bit of a case study. So, I’m gonna get a new wheelchair in like a week, which completely sucks. And everybody’s like, “Aw! New wheelchair! It’s gonna be awesome!” I’m like, “No.” It’s like getting new legs, right. OK. So, one of the sorta bells and whistles of the chair is that it has a elevator up so I can go three feet up, OK? I went back and forth about whether I wanted that. And you have any thoughts about that before I tell you my thoughts on it? ‘Cause I’m really curious.
JILL: And I had different thoughts than you and your wife did, so.
CHRIS: Yeah, yeah, yeah!
CHRIS: So, what do you think about that?
SARA: I mean, just to echo what I just said, I’m for choice, right? So, I think that’s the one that Chris wants. If those designers were hearing that lots of people would like level eye contact with standing people, then I’m all for it, right? If for them, that is a kinda normativity that they want, great, right? Like, I am not such a theoretical academic that I’m kind of like, oh, that’s super cripping or even normalizing in a way. For one thing, as a non-disabled person, that really is out of bounds for me. It doesn’t really matter what I think. But philosophically, as a maker kind of person, if my students came to me and said, “Should we build this thing with Chris,” it would depend on what Chris says, right? So, what are your thoughts, your respective thoughts about this?
CHRIS: Well, for me and for Lisa, Lisa really helped me see this clearly. I ended up ordering it. So, just so you know, that’s the end of the story. But she helped me understand that part of my persona or modality within a space is for people to come down to me, right? Not in a subservient way, but that’s sorta like a sort of intimacy thing, right? And so, in loud rooms, people have to really come down to talk to me because I don’t have a loud voice. But she thought that that might alter my presence too much, right? But then, Jill, what was your— Because then—
JILL: Well, I’m all about choice. But, Chris, I would hear you talk a lot about, “Oh, going to that restaurant. We’re gonna have a meeting there or we’re gonna have something there. No one can hear me,” right? “I can’t have my voice heard above everything else because I’m at a different level.” So, for me, for professional space, I thought, I love the elevated option because you can choose in those settings to be heard, to hear better, whatever it is. So, for me, it was clearly, it was just based on years of knowing you and in your hesitation to go certain places because of that height difference, because of that loudness in spaces and if it can bring you up to those levels. And maybe you just like looking at people’s butts. I don’t know!
JILL: But there’s certain places where you’re just in this crowd that—
CHRIS: Yeah, no, absolutely.
JILL: —just observing and listening, that’s why I thought it was a good option.
CHRIS: These objects are both personal, cultural, professional, theoretical, philosophical, political. They’re all these things, right? And so, it’s just sorta interesting to look at it from all those different angles, you know.
SARA: That’s right. And I think the adaptation, right, that you’re choosing at this moment in your life when the chair you loved has served you maybe perfectly well and maybe stopped serving you at a certain moment and you opt into another one, but that adaptation runs both ways. And I think sometimes people get a little hung up on kind of like, well, you can’t design a customized world for everyone or like Universal Design will always be inaccessible to somebody. They wanna kind of stop talking by poking a hole in the premise. And I’m kind of like, it’s not really the point. Adaptation means that sometimes Chris is gonna decide to bring his body to the standing world, and sometimes he’s gonna ask the standing world to come account for, as you say—I love that—the stature of his body. Sometimes. It’s gonna be both, you know.
Like my son is in speech therapy right now ‘cause he has a pretty profound stutter. Could I insist that the non-normal way of his speaking is fine, and I’m not gonna quote “try to fix it?” I could do that. Maybe that’s the right thing to do. Feels also important that he might someday wanna be speaking as smoothly as possible in order to build relationships and friendships and that that normalizing may be, for him, desirable. It’s just not clear. And so, I don’t really have time for people shouting kinda one way or the other, because I think it keeps, again, ejector seating away from what’s really important. And that is the dynamism of the body in space and the changeability of each of us in time and in our lives and in relationship to our stuff that we love. I mean, I’ve loved hearing you talk about, Chris, your relationship with your chair. If people understood what a interesting ecology your whole body is forming, then they wouldn’t rush to thinking like, “Chris, don’t you want the latest zippy cyborg thing?” Or “Chris, you don’t have to stand.” Like you don’t ever had to do that. That’s just playing into the dominant paradigm.” Neither of those things, I think, is really—
JILL: Yep. And in your case, Chris, it’s what you want for your lifestyle right now. You want more speed so you can go biking with your son and your wife, right? Maybe it hasn’t been that case up until this point. So, there’s these features that are allowing you to enjoy and experience life in the way that you want to.
CHRIS: Yeah, exactly.
JILL: And I think that’s really amazing.
CHRIS: Yeah. Yeah.
[lounge-y music break]
JILL: I would love to hear when your book is officially coming out and what plans you have and where people can find it and all those things.
SARA: Yes, so, it is available for pre-order now at the Penguin Random House site. But it’s Riverhead Books, coming out on August 18th. And right now you can, on the Penguin Random House site, order through bookshop.org if you’re inclined. That supports independent bookstores who’ve really struggled under COVID-19. I know some people’s local stores are starting to open up and do curbside again. I just wanted to shout out to Bookshop ‘cause they did a quick design to keep supporting independents during the pandemic. And there will be an audio book. I’m gonna record that in July. And yeah, I’m trying to put together some media. The book is not actually full of images, which people are surprised about for a design book. But we wanted to keep it at an accessible price point. It’s not really meant to be a big coffee table book. And the stories of the people, again, are the more interesting stories than the actual gizmos and objects. But I do wanna create a little bit of media to be a kinda teaching tool if people wanna, you know, you could find Steve Sailing, who has ALS and built himself a residence. You can find him eminently online. You can find the Adaptive Design Association. You can find Jaipur foot all over the Internet. So, you can find those subjects in living color if you want them. But I’m also thinking through some media that I wanna make as companion pieces too.
[lounge-y music plays through the next few lines]
CHRIS: Sara, you rock.
CHRIS: Thank you for spending time with us.
SARA: You guys are awesome!
JILL: Thanks for listening. Be well, keep your distance, send us your comments, questions, and your submissions for Oaklee Thiele to hello@DisArtNow.org. Please make sure to follow the My Dearest Friends project on Instagram, Facebook, and DisArtNow.org. And thanks again to the Ford Foundation for their support of this work and to cat enthusiast Cheryl Green for the transcription of this podcast episode.
Music: “Pinky” by Blue Dot Sessions. (Source: FreeMusicArchive.org. licensed under a Attribution-NonCommercial License.)