The Dignity of Help: Sara Hendren’s What A Body Can Do

Podcast with Sara Hendren, artist, design researcher, writer, and professor at Olin College of Engineering, and Brandy Schillace, EIC

Sara Hendren’s book, What Can A Body Do? How We Meet the Built World, looks at design and disability at all scales: prosthetics, furniture, architecture, urban planning, and more, to examine critically the definition of the good life.

Listen to the podcast on Soundcloud.

Transcript

BRANDY SCHILLACE: Hello, and welcome back to the Medical Humanities Podcast. I’m Brandy Schillace. And today, I’m very happy to have with me Sara Hendren, who’s an artist, design researcher, writer, and professor at Olin College of Engineering just outside Boston, USA. We also want to talk to her today about her new book that’s coming out on Tuesday, What Can a Body Do? How We Meet the Built World. Thank you for joining us, Sara.

SARA HENDREN: It’s great to be here.

BRANDY: So, can you tell us a little bit—I’m familiar with your work, and of course, we’ve been doing a series. We spoke to Alice Wong and various other folks about accessibility and body meets world—can you say a little bit more about what you do and then lead us into what brought this book to fruition?

SARA: Yeah, sure. So, I do teach at Olin College of Engineering, which is a tiny little kind of laboratory school for rethinking engineering education outside Boston. So, we do things like you would imagine at an engineering school, and we also do some quite different things. And one of the things that I do in my laboratory, I’m an artist by training and in design. But I’m not an engineer by training. So, it’s really fun for me to meet my students in this realm of disability prosthetics, what has historically been called rehabilitation engineering, precisely to rethink what technology is for and who’s asking for it and for what ends do we make it. So, for the last half dozen years, I’ve been teaching human centered design and other kinds of topics, but also disability and design, disability and engineering. But the kinds of projects that my students and I take up are not always the kind of typical ones you’d see in the lab.

So, for instance, we worked with wheelchair dancer Alice Sheppard on a ramp, but not a ramp for getting into a building. She asked us to help her build a ramp for making dance onstage. So, using those physics as beautiful acceleration and resistance, all those properties, but to make something glorious precisely with a chair. And we’ve worked with blind artist Carmen Papalia, who wanted to turn his navigational cane into a sonic instrument to kind of play the built environment. So, my students put a contact microphone at the end of a cane and built a kind of amplifier with all kinds of reverby effects for it. So, that was an assistive technology and kind of prosthetics if you wanted to think of it that way, but it came from people’s wishes who were actually seeking to use their tools to help people ask better questions. Things like what counts as normal, right? What is a beautiful, pleasurable experience in one’s body? And what is a way to think about the sensory experience of the world outside the norm that helps us, yeah, sometimes solve some problems—We do plenty of that in my classroom, too—but also to ask questions. And that’s what’s really exciting to me, is when the laboratory becomes a site for what’s historically been the property of the arts, which is to say, help me think differently. Like, turn my head around, you know, and rejigger my expectations about what’s supposed to happen here, but help me also think differently about other humans in a way I hadn’t before.

So, in the course of, that’s six years of work as a professor, but it’s been about a decade of doing my own design practice in some of those collaborations, some on my own, and then also just hundreds of conversations and reading and all kinds of stuff that I wanted to put together in a very story-driven book that explores both what design is. And design, of course, is at all scales of our lives—so, stuff we’ve put on our bodies, but our products, also our furniture, our houses, our streets—but also to translate for the general kind of non-fiction beginner reader a lot of the incredibly nourishing, complex ideas in Disability Studies and where those two things collide. So, the moments where design and disability meet are some of the most creative and urgently powerful, vital kind of moments that I’ve witnessed. So, I wanted people to see those in the form of interviews again and sort of scene-based reportage of people doing their lives, sort of reshaping their worlds in various ways, and then bringing in some of these big ideas in Disability Studies that actually are for all of us.

BRANDY: Yes.

SARA: They’re about what it means to be in a body in the world over the lifespan, to have needs, and to experience changes, right? And all of those incredible ideas really are, I think, for everyone. And so, I wanted to write the kind of book that would be the introduction in that way.

BRANDY: That’s wonderful. And I just recently did a podcast with Cheryl Green, who, in addition to being a transcriptionist, does audio work and has done some film work. And one of the things that came out of that podcast is this idea that accessibility should be, is in fact, creative. It’s a creative engagement between body, community, and world, and that it’s not treated that way. It’s often treated as some sort of mechanical, almost punitive thing that comes on afterwards, as it [unclear].

SARA: That’s right.

BRANDY: You know.

SARA HENDREN: Yeah.

BRANDY: And so, I think that what you’re talking about is it’s sort of taking out the sting of a really false binary, right? This idea that, so, it reminds me a little bit of say patient/doctor, healthy/unhealthy.

SARA: Yes. That’s right.

BRANDY: Able-bodied, you know. Those aren’t really categories in the way that we like to put them in. Those boxes don’t work. There’s plenty of doctors who are also patients, and health is a moving target.

SARA: That’s right.

BRANDY: So, I’m really interested in that. And I wonder if you can give us just maybe an example or an anecdote that helps explain the way we can change the built world to wrap around those concepts.

SARA: Yeah. In the chapter called Limb—so, my book is arranged to address all those design scales that I mentioned to you, and it does start on the body and expand out from there. So, after introducing some concepts to the reader initially, we drop into Limb—and Limb is this kind of exploration of all the ways that people both opt in and opt out of prosthetic replacement parts. And the very paradigm that you’re talking about, this kind of clinical paradigm for thinking about bodies, it’s kind of at its peak in what’s called rehabilitation engineering, which has a fascinating history, right? It’s a post-World War II phenomenon of big funding dollars and lots of wonderful research attention being given to the production of replacement parts and limbs that were owed to the men who returned from that conflict and this sense of compensation for what they had sacrificed. And so, that’s all to the good. It’s given us a lot of fantastic feats of engineering, but rehabilitation engineering is very much a clinical and biomedical model of personhood, right? So, it has its limitations too. It sees the people as patients, as you just said. And the interesting thing is that actually, people are, sometimes they are patients, and sometimes they’re looking for rehabilitation, for sure. But lots of times, people are also looking for modes and means and tools and techniques by which they do what all humans do, which is to deeply adapt in this incredibly plastic and mysterious way. We’re all doing it all the time: knitting together a habitable universe for ourselves with stuff and without stuff.

So, in the limb chapter, we meet Chris, who was born with one arm and who had half a dozen arms made for him in childhood. And his parents and doctors all thought, well, you know, surely, we should produce a replacement part. But because he was born that way, he was just so adaptive, and he would pick up, scoop up two Legos with his one hand and brace them against the shoulder of his residual limb and snap them together. Like he was just way ahead of the technology always.

BRANDY: Mm.

SARA: So, we thought we’d sort of follow him through doing this incredibly dexterous life that he has, which is one-handed and uses his feet and toes in a really interesting way. But he also did find a moment where he needed a prosthesis, and that was when his first child was a newborn. And he thought, OK, how do I change the diaper for this baby? And so, we see in an image and then in a description the very clever, soft prosthesis that he builds to help change his baby’s diaper. So, that’s this kind of incredible moment of this very bespoke, just-in-time, super adaptive prostheses that you would never see coming out of a clinical setting, certainly not in a rehab setting or to be even acknowledged as technology, so.

But that’s not the only story, right? We meet a man named Mike who does use that myoelectric arms, $80,000. It’s an incredible feat of engineering. It affords him some things; it doesn’t afford him others. But we meet. Then we go across the world to the Jaipur Foot Organization in India, which has designed and distributed for free a million and a half lower leg prostheses out of very clever, low-cost parts.

BRANDY: Nice.

SARA: So, what I want people to see is that there’s not a single story for the way bodies adapt to the world.

BRANDY: Mmhmm.

SARA: And it’s certainly not only a clinical story, but it’s also not only a high-tech and sort of innovation story. And I think that one is so tempting to us because I think it reassures some people that this idea of a cyborg, kind of futuristic self via prosthetics, that’s kind of been the mainstream media coverage of stories like this. And I think, oh, yeah. Great. But there’s so much more.

BRANDY: Right, right.

SARA: And my hope is that people will see. Also in Limb we meet Audre Lorde, the great writer and activist and poet who actually opted out of a breast replacement after a mastectomy on one side. And we hear her tangling at the doctor’s office about the meaning of opting out of a prosthetic, right, and the deep biopolitics there. So, my hope is that the reader will see themselves in those stories, not because there’s one way to do it, but because it’s a plurality.

BRANDY: Right.

SARA: And to also see that when their bodies change, what will be the, to ask ourselves, what will be the resources we’ll call on to say, what’s my next move, right? What tools do I wanna reach for, and might they be in my household? Or do I wanna invite now an engineering laboratory or a clinician to help? And how would I know? You know, what are my real wishes, and what are the resources I’ll marshal to make them come alive?

BRANDY: Well, and I think one point I’d like to just sort of bring to the fore is your subtitle is How We Meet the Built World. And I think that’s really interesting because, of course, we all meet the world exactly as we are. There’s no such thing as a incomplete body. If you’re alive and you’re functional, what does it mean to be complete? What does it mean to be functional?

SARA: Yeah.

BRANDY: So, the idea that the world that we meet on a daily basis, there’s a lot of artificiality there.

SARA: Yeah.

BRANDY: I mean, in some ways, I’d almost say that my iPhone and my laptop are like prostheses. I simply couldn’t function as a freelance writer without them.

SARA: That’s right.

BRANDY: And so, I think the fact that we have these arbitrary categories of, again, this is art, but that is not, or this is somehow more meaningful, and that is less meaningful, this is more able, and this is less able, they don’t really, it doesn’t really resonate with me in the same way.

SARA: That’s right.

BRANDY: Because I feel like aren’t we all, we’re all human, and we all use devices. And this is a built world.

SARA: That’s right. That’s exactly right. And I mean, there’s a reason why we locate significant jumps in civilization, not all of them, but there’s significant jumps identified with tool use, right? We talk about these sort of ages of the moments when humans must, of course, amplify our power with sharp knives and blades, right? Like, if you go to these archives of early tools, what are you seeing? You’re seeing the body amplifying its power in ways that it can’t do on its own, right?

BRANDY: Exactly.

SARA: So, I say in the introduction, like it’s the body +, the body + a tool is maybe the natural state of the human, right?

BRANDY: Yeah. [laughs]

SARA: Like, it’s hard to resolve that.

So, I say in the book, the body + may be the most natural state of the human. Which means that all tools and technologies, fundamentally, are assistive.

BRANDY: Mmhmm.

SARA: And in disability, you’ll see this kind of redundant moniker of “assistive technologies.” And they’re designated for disabled people, right? But in fact—I mean, I use that term, too, as a shorthand in my field of Engineering—but in fact, it is a redundancy that’s quite telling. Because what our technology’s doing, if not assisting, [chuckles] that is their very nature.

BRANDY: Right. Exactly.

SARA: If you look through your kitchen drawer and you look through all the detritus on your desk, you are finding ways to harness the power of tools to amplify the work that you wanna do. And so, what is the point of saying that? It’s not to say that all of us are the same, right?

BRANDY: Sure.

SARA: Or somehow we’re all disabled, right? Because that would erase a kind of very particular set of barriers that lots of bodies face in the world, and they’re not the same. Nonetheless, the invitation is to say, well, what if there is a single kind of really big plane on which there’s a whole continuum of assistance being given and received every day with tools and technologies, and that the most complex and involved might live, in the same, on that same plane and continuum as the humblest kind of your chopsticks and your knife and fork.

BRANDY: Mmhmm.

SARA: And then what that means is that you can locate yourself in a body that has needs, full stop.

BRANDY: Right.

SARA: The body is needful. It is personally, biologically, but also politically needful. And so, what I try to say in the book is like, why don’t we make these tools for assistance visible and unifying, and embrace the kind of dignity of help?

BRANDY: Right. Yes.

SARA: That’s what it’s about: the dignity of help, so—

BRANDY: The dignity of help. Oh, I really like that. I think we might title this podcast that.

SARA: Oh, good! I would like that. And that’s where I think, you know, as your conversation with Cheryl indicated that I wanna just underline that creativity and urgency, creativity and urgency. And I think sometimes people miss one or the other.

BRANDY: Mmhmm.

SARA: So, they might say, “Why, yes, this is an important and urgent civil rights matter.” But they have circumvented the riotous joy of adaptation. When you see Chris, in this, fashioning this tool to help him do this very intimate act of care for his child, you have to see the deep adaptation of that and recognize it as really human. And then also to confront the just wallop of politics that we need for a more inclusive world. But I am, even more than inclusion, I think sometimes people rest on this idea of inclusion. And I wanna say yes, of course. But where’s your wonder? Where’s your wonder for creativity and urgency? Creativity and urgency. That, to me, is a powerful alloy for seeing ourselves connected to the cause of and the nourishment of disability, and also to see that the design of the world, history shows, has been unmade and remade. We might do so again.

BRANDY: Well, and I think too, another point to be made here is that ableism doesn’t help anyone. It doesn’t help the abled either. It doesn’t.

SARA: Right.

BRANDY: Because none of us can go without help. None of us can go without assistance. And I can use myself as an example of that. I have a chronic illness that I pretended wasn’t, for years. Because there’s such a, especially, I think, in the United States, but in the West in general, we’re devotees of this concept of power and health and wholeness. And it’s an imaginary concept that literally, it’s a bar that no one ever reaches. It’s imaginary, it’s illusory, and it doesn’t matter. We are all functioning together. And how we are is a beautiful collection of inconsistencies, frequently.

SARA: That’s right.

BRANDY: And so, I think that, you know, to have these things saying this person needs help and is therefore lesser in some way. I think of all the job ads that say, “Must be able to lift 50 pounds.” Like you’re literally filing papers, you know?

SARA: Yeah! [laughs]

BRANDY: You’re just basically eliminating disabled people.

SARA: Yeah.

BRANDY: That concept is a really strange one, that somehow, for me to be a valuable clerk in an office, I ought to be able to lift 50 pounds! Like it’s this Superman ideology that doesn’t have any place in a world full of assistance.

SARA: That’s right. And I think if people understood, took seriously the kind of strongest, really the strongest sort of powerful critique that’s built into Disability Studies, which is that, as you say, humans enter their lives quite dependent on other people, not even interdependent, but plainly dependent for a time. We often end our lives also acutely dependent on other people. So, since we share that fundamental fact, I mean, fundamental, then why not say this also organizes us too? So, then in times of our lives where we enter into, enter out of, or exit out of, the way we have temporary conditions, we have chronic conditions, we have sudden changes in our capacities. If we could recognize that, not as easy or romanticized, of course, but—and we might wish for cures in some of those cases—but to recognize it nonetheless as natural and human, that it actually connects us to the experiences of others rather than casts us out, right?

BRANDY: Mmhmm.

SARA: And I think that’s the experience of some many non-disabled people spend so much time trying to distance themselves from the experience of that humanity, so that then when things do come for you, it’s quite surprising, when it’s right there on offer as a form of wisdom.

I mean, I spent a lot of time with Steve Sailing, who got a diagnosis of ALS in his early 40s and immediately set to work building, designing and building a residence where he could live when he knew his mobility was gonna change dramatically. So, 10 years on, 12 years on, he lives in a residence named for himself where he can, with a wheelchair-mounted tablet and a cursor that’s mounted on his eyeglasses, can open and close all the doors, run the HVAC in his room, all the media, all those kinds of things in a very automated existence that also looks beautifully like a home: has a kitchen, living room, and an outdoor space. So, he lives there with a number of other people with ALS or MS. And, you know, it thrives on, he depends on philanthropy, of course, to make that run. And there are people who have given money to support that, residents who’ve never set foot in the door because seeing people in acute states of non-normative bodies feels like something to avoid. Feels like something that people sort of can’t.

And my hope in the book is to say, look at this. Steve has built a life worth living. Steve would also rejoice tomorrow for a cure for ALS, right? Let’s hold those two things together.

BRANDY: Right.

SARA: But a life worth living, can be built. Can be built. And he showed that it can be done. And so, my hope is that you see a little more with a little more openness, you know?

BRANDY: Mmhmm. Well, and I think willingness, because it is— And again, this comes from a culture that pushes us to work harder than we should and make ourselves sick for our jobs. And there’s all sorts of things, I think. I think these things are probably going to change quite dramatically, already have done because of the pandemic. And it’s forcing people to reevaluate many of these assumptions.

SARA: Yeah.

BRANDY: And so, maybe, possibly, this is a time where we can reevaluate on a grand scale to create something that’s more accessible for everyone and more accepting as well.

So, thank you, Sara, so much for joining us today.

SARA: Thank you.

BRANDY: It’s been an absolute pleasure to have you on.

SARA: Pleasure to be here. Thanks so much.

BRANDY: Thanks.

(Visited 463 times, 1 visits today)