Transcription by Alletta Cooper

Krista Tippett: Here is a sentence I love from Sara Hendren: “Bodies are soft flesh in a world of machinery, and that can be a beautiful match or an experience that’s full of hurdles.”

This is a fact so ordinary — and yet not something we routinely pause to know and to ponder and work with. That our built world is designed around something called “normal” and yet every single one of our bodies is mysterious, and constantly adapting, for better or worse, and always, always changing.

Sara is one of those people who has taken in the convergence of her gifts and her life to possess a singular vocation and vantage point on the world: being a painter and loving how art reveals truth not by way of simplicity but by juxtaposition; teaching design to engineering students; parenting three beloved children, one of whom has Down syndrome.

This is a conversation that will have you walking through the world both marveling at the ordinary adaptations that bodies make and asking — in Sara’s words — “restless and generative questions” of why we organize the physical world as though vulnerability and needs for assistance are not commonplace, indeed salutary forms of experience that reveal the genius of what being human is all about.

I’m Krista Tippett, and this is On Being.

[music: “Seven League Boots” by Zoë Keating]

Sara Hendren is an associate professor in the College of Arts, Media, and Design at Northeastern University in Boston. She previously spent nine years teaching at Olin College of Engineering. Her book is What Can a Body Do? How We Meet the Built World.

Sara Hendren: Krista?

Tippett: Sara?

Hendren: Hello.

Tippett: [laughs] Hello. Oh, nice to have you on the other end of the line.

Hendren: Really great to be here. Thank you, Krista.

Tippett: I’m always curious about the religious or spiritual background of a childhood. And I know you grew up, like me, in the Bible belt and in a religiously saturated world.

Hendren: Yes.

Tippett: And so, I want to ask you about that, but specifically I’m curious if you think back to that air you breathed, and that world that held you, and then think about these things that so captivate you now that you’re engaged in, I would say a design sensibility, and also an attention to the human body. How do you see — or do you see roots of those interests in that religious or spiritual world of your childhood, that formation?

Hendren: I do. We were part of nondenominational churches in Arkansas, that’s where I grew up, and kind of Evangelical, met in a high school basketball gym to start. There was a real sense of returning to roots and I think even a form of counterculture that I think, looking back. And so, my parents have been part of the social infrastructure of that style of Christianity for a long time and there are many good things about it. They’ve been part of community groups and all that, what we call now social infrastructure, the kind of showing up for people and meeting and leaning on one another, and so many of those kind of practices. And I think I also found it disembodied. And when I went to college, I actually went to Wheaton College, which is outside Chicago.

Tippett: Which is Billy Graham’s alma mater.

Hendren: Yes. And it will tell you something about the way I grew up, that people thought that Wheaton was a little bit frighteningly liberal.

Tippett: Oh, really? [laughter]

Hendren: Yes, a little bit. To be clear, this is a place where we couldn’t drink or dance at all. We signed a pledge to say that we wouldn’t. And yet what is so interesting — I’m so grateful that I went to Wheaton, because I got a liberal arts education there. We read Foucault, and Zora Neale Hurston, and Virginia Woolf, and I discovered so many things there.

Tippett: And it’s an extraordinary place. It still is —

Hendren: It’s an extraordinary place, it is. And I could talk about that for a long time. But, like many students at that time, I’m so grateful that I went to a place where first-order questions, big questions were on the table. Our professors took seriously the questions that are on the minds of people at that age in a particular way that is like, what are we here for? And what is life about? What is the nature of reality?

And, like a lot of my peers, I started going to an Episcopal church and a number of my peers went to Catholic churches, went to, in other words, the liturgical and sacramental churches of that time.

I would say that finding the Episcopal church, eventually the Catholic church, the kind of sacramental, is such an acknowledgment of the animality of the human creature. The kneeling, and the images, and the kind of distinct separateness of that sensory environment and images of saints and candles and so many reminders that you are, in fact, an animal creature who has come to seek some way of being more than animal, but never, not animal.

And I think that, so I will say that my commitment to my joy in everything that’s tangible about the world — so the way that artifacts hold ideas, and the way that shaping artifacts can then, in tandem, reshape ideas, that artifacts can do that kind of double work that kind of acknowledgment, finding myself a body in that moment has been distinctly important. There’s so many things about that time.

Tippett: When you use the word artifacts, put some flesh on that bone. Because, I feel like for you, you’re so much in your imagination when you use that word. So, I want you to kind of download that a little bit. To use a tech word.

Hendren: Download, right. The language of our time. Artifacts — growing up I think, like a lot of people drawn to the arts, I loved that paintings, and sculpture, and the way that a painting or a poem can let life be as complicated as it is in one kind of distilled form was so joyful to me. I think, really, you’d have to fast-forward to when I kind of discovered disability, prosthetics, and design. And that was a result of my son Graham being born. And Graham has Down syndrome. He’s the first of our three children. That training in visual culture primed me for seeing what I would see with him in my life, and what that was was the artifacts of disability.

So, after he was born, just in a few months time, we started going to physical therapy, and speech therapy, and occupational therapy, and all kinds of objects, artifacts were in those spaces. The little orthotic braces that are made for toddlers are printed with little cheery images of animals. [laughter] And I would see kids in these little gyms wearing cochlear implants that had a bright plastic dinosaur on top. And I would just think, “Wow, there’s so much going on that’s both clinical and functional in these objects, but there’s also something expressive that’s happening, that they’re trying to broadcast something about the person who’s wearing them.”

And so, that got me interested in prosthetics in my parent role, but eventually, I got interested in the engineered and designed utility and functionality of objects too. In other words, technology, that’s also culture.

All of it though, is doing something to help us make meaning of our lives and also, yes, to get stuff done.

Tippett: And to make meaning of our lives as we inhabit our bodies…

Hendren: That’s right.

Tippett: …that’s really where you focused in and are creative. And so, the title of your book is — which is a wonderful book — What Can A Body Do? How We Meet the Built World. And that question — I didn’t know until I read this from you — is really a famous question in the history of philosophy. Would you say a little bit about that?

Hendren: Yes — “What can a body do?” is a question posed by Gilles Deleuze, a French philosopher, and he was in dialogue with a much earlier philosophical question of Spinoza’s, this, what can a body do? And they meant very different things. But, Deleuze was taking this up as a project of posing the body as an assemblage. So, not the kind of classical form of the question, what is a body or how is a body like a mind or not like a mind?

Deleuze is saying something else, which is just it depends on the context and what is around, what this body can actually do. The designed world, the presence or absence of prosthetics, but also assistive technologies of all kinds, things like ramps instead of stairways, those make possible passage through the built world that is otherwise impossible. So, you say, “Ok, well, what is a body in a wheelchair? What can it do?” Well, it depends. It’s in part, do the legs ambulate or not? But, really the question is, what’s possible in the built world in the passageway that it’s trying to go down? So, can it get up a set of stairs? No. But, can it get up the incline plane of a ramp? Yes. And everything that that means, getting —

Tippett: There’s something that’s so interesting about just the way you said that, because it just kind of shifted my perspective from the kind of question that we ask culturally, which is it accessible…

Hendren:  Yes, yes.

Tippett: …to you? And then, just the way you phrased all that is, the question is, what kind of partnership is — are we the rest of us, the culture, the architects — What kind of partnership are we in with all kinds of bodies? And, the first line of the book is, from you, “Every day every body is at odds with the built environment.”

Hendren: That’s right. There’s porous skin and this kind of inherent vulnerability, even, and yet, we build these beautiful hardscapes, many of them that do have these edges and corners. And so, we figure out how to adjust ourselves in chairs, and standing, and sitting, and ambling down the street on uneven pavement and all kinds of things.

I think what you said there, Krista, is what’s animated my work, which is to say, I think the standard question is, “How do we make this accessible?” And what people mean is, “How can we make a bigger tent of a world and quote not forget people who are using wheelchairs, or walkers, or crutches, or all those mobility aids or perhaps a navigational cane or any number of things.”

But, what I try to do in that book is to say, “I don’t really think making a bigger tent is really quite the right metaphor here.” Because people with disabilities have been way out in front in actually reinventing and re-imagining the built world in so many ways. So, in other words, instead of that, let’s make a bigger tent and not forget, I’d rather you see this rich kind of estuary of this incredible ecosystem of remaking the world in artifacts that make more bodies more expressed and more able to get into the world and more richly varied. I am trying to say: if you pause and look, your wonder might be activated by this incredible flesh envelope that’s making its way through the world. Its inherent adaptation. So, there just are stories throughout of what that looks like.

[music: “Help From A Stranger” by Sanctus Music]

Tippett: Something else that I learned from you is that this metric of what is normal, and building everything around this idea of normal, is really new. And that before the 19th century, the paradigm was: What is the ideal? And if you were working from what was ideal, then almost nobody met that, right?

[laughter]

Hendren: That’s right.

Tippett: So, everything was an adaptation, and that was understood. And then, there’s another — you wrote about that this also kind of dovetailed with Darwin and interpretations of Darwin. You said average came to be equated with better and best, and what was common was natural, and what was natural was right. And just thinking about that and all the different kind of attitudes, and assumptions, and actions and design actions that flow from that mentality shift.

Hendren: That’s right. And that’s a misuse of Darwin, but it was this kind of social evolution and indeed eugenics that followed in that wake, like whoa.

Tippett: Which is the extreme implication of it.

Hendren: That’s right. And people have written about this, like in our own country in the early 20th-century county fairs where they would have these “better fitter families.” Families showing up together to be graded on how fit in a kind of virile body and mind soundness state they were as a kind of national project. There was this meaning like, a political nationalism, like a kind of investment in the betterment of human beings as though that were possible, and you get institutionalization of so-called “feebleminded.” That history is really ugly, but it won’t do to kind of look back and say, “Oh, those blinkered people, we’re not like them.” There’s a long tail of the kind of just celebration of how quick, how fast, how “ahead of the curve” people are as a measure of their worth.

Tippett: And it’s one of these things where if we become conscious of how constructed this is, what an inheritance it is. That it is something that was at one point created and then passed down, then your imagination just opens wide.

And I feel like, obviously, first of all, just having your first child and what a heart and mind and life opener that is, and Graham being born with Down syndrome. And I listened to you in another interview and you made a statement which — I want to repeat it because it really landed with me and I’ve been pondering it. And I feel like it describes both you as a human being and also you as a designer. You said in adulthood when something really big happens to you, you either just kind of assimilate it into the preexisting story that you’ve been living by, or you accommodate and you make room for this experience, and your story shifts. And it feels to me like, again, that’s what happened to you with the birth of your first child, both as a human being and again, in your craft as a designer.

Hendren: That is very true. My dear friend and colleague John Adler studies narrative identity in adulthood. He’s at Olin College where I worked until this year. And he taught me this kind of, that we make stories of our lives as a biological imperative. We have to see our lives as coherent. And now whether that takes on a positive cast overall or a negative one is what makes a lot of the difference. But, the coherence is really powerful. We need to tell stories that do make sense over time of how we got to where we are. And in the science it’s a feature of, really, how we exist. There’s genetic factors, and there’s nurture, environmental factors, and then there’s this story-making. And that really gave language to me for what happened — that when I had a son at 32 who had Down syndrome, I just hadn’t thought a lot about Down syndrome. And I didn’t realize, most of all, Krista, the way having a baby with Down syndrome just puts you right square into the middle, whether you want it or not, of the kind of selective genetic testing, bioethics debate. So, I didn’t realize that I was entering into that kind of moral quandary about who counts, what does —

Tippett: That just gets at this better, best, normal, better, best thing too, doesn’t it?

Hendren: It does. And living with that and thinking, “How can a person be?” There’s no disease of Down syndrome. There are higher risks for other kinds of things, but what we’re talking about is low general intelligence, needs for support over the lifespan, if we’re coldly describing it. And it just invited me to rethink human worth entirely and in such a way that introduced me to all kinds of other people who have disabilities of all kinds, how it just lit up my imagination for those artifacts, yes, that bridge the body and the world. But, most of all, what does it mean to be a gifted and contributing human being? Where does dignity come from, and how do we talk about it, and how do we plan for it? Well, there’s just so much to say about that. [laughs]

Tippett: And how did it start making you look at the world differently as a designer? Did that start to happen? It sounds like you — also you describe how because of this Down syndrome diagnosis or identity, you also walked into this world of intense medical testing and assistance and technologies. It seems to me that that was also really formative to you.

Hendren: Absolutely.

Tippett: Just grappling with that.

Hendren: And the high contrast of it, because we were, as all parents are, we were just absolutely smitten with and in love with this singular human being in the way that you are. And, of course, every parenting, especially a first parenting experience, is so life-changing in so many ways. And then, to have this other layer — The contrast again, was so high of just thinking us in our little life, me and my husband and this first baby of ours, and then going to the doctor’s office and it just being all the measurement stuff for one thing, charts and measures and numbers and things, risks, and possibilities. But then, really, the imagination behind, just like going to a little gym, a little pediatric gym, and being like, “This is so clever.” The swing that they devised to be playful, but to challenge the balance for a baby with low global muscle tone. And I was so taken with the kind of possibility that was suggested there.

And then, I’ll tell you what, too, I saw somehow an image of Temple Grandin’s squeeze chair. And people may know this, Temple Grandin’s a famous kind of self-advocate who is autistic, and she’s also an engineer and into animal husbandry, has done a lot of work in animal husbandry. And she, as an autistic person, she experiences physical affection from other people really as overwhelming. And she designed for herself, because she’s an engineer, what she calls a squeeze machine. So, it’s like a wooden chamber that she can get into at the end of the day, and it will wrap around her like a hug, but a hug by proxy. And she then worked with an artist named Wendy Jacob, and they built some chairs that had arms that would reach up around you and hug you that were based on this kind of squeeze chair. And that, to me, was magical. Something about this very functional object that was a prosthesis for building a bridge between the body and the world. But it also had this really interesting poetry about it. Furniture that gives you a hug. What an interesting idea that this thing would kind of be animate or something.

And I think the reason why that felt so powerful to me at that time is because I thought, “There is an object that suggests that disability is this adaptive and imaginative agency-full experience, that the clinical kind of material language of just crutches and Band-Aids and IVs and so on, that clinical language would never do justice to this life.”

And I knew it already having a baby with Down syndrome who — it’s like one day he was Graham, like a singular human being, and then the next day people would speak about him as a type. And that was the hardest of all because we knew, of course, that we had a person with us, the likes of whom had never been present on the planet before and never will be again. And yet, here was this kind of clinical diagnostics rushing to characterize him, thank goodness for doctors and for numbers and averages and controlled studies and all those things.

Tippett: It’s a both/and.

Hendren: It’s a both/and. But this is why I work between art and engineering, because I think something like disability needs so many descriptive languages to try to get at what’s real.

Tippett: And from you, I learned that one billion people, that the WHO identifies one billion people live with some kind of disability, which then really does test that idea of what is normal and not normal. And so, I found myself walking this line of wanting to honor disability that, I would say, in an ongoing everyday way is shaping a life. But, here’s a beautiful sentence from you as well: “Bodies are soft flesh in a world of machinery, and that can be a beautiful match or an experience that’s full of hurdles.”

And it’s also true, as you very eloquently describe, that every single one of us lives in a body that is changing across time, and that enters periods of vulnerability and periods, at least, where our bodies don’t match this world of machinery. And it can be being pregnant; it can be because you’re on crutches because you broke something; it can be this arthritis that is developing in my hands right now, and I don’t know — that is going to affect me at some point. So, I wonder how you, navigating this, of being, of so honoring very defining disability, but also understanding that in some ways it is a spectrum, like so much that we’re understanding now, so much of human identity.

Hendren: That’s right. And I think, after many years of being taught by disabled scholars and academics who would call themselves disabled, and reading deeply in disability studies, meeting so many people, building friendships and colleagueships, I think maybe the most distilled way of talking about it is to say that disability is needfulness, personal, and political, social. And so, what that means is that we might actually say that needfulness — because it is temporal and changing and over the lifespan — is a feature actually of human life, and maybe even constitutive of the good life, I’ve come to think.

And I think we’d want to then say, well, in the 1960s and after you get kind of disability politics as an identity. You get people building a coalition out of atypical bodies because it’s not all the same. Global aging is different from using a wheelchair, being blind and in school — the real legal accommodations and those guarantees that came, for example, with the Americans with Disabilities Act and others like it around the world, those are really important and they were strategic policy changes of saying, “Look, in order to be citizens, in order to be civic actors, disabled people need a kind of infrastructure.” And it’s really interesting that that infrastructure, we’re talking about real material, concrete, in order to get into the public sphere, in order to go to work, in order to go to school, in order to go to the voting booth.

So, disability in that way, people want to be careful and say, well, as Lennard Davis says, it’s cheap to say, well, we’re all disabled. But I do think there’s something — at the high level, existentially, disability is just needfulness, and we might just make friends with that fact. We might welcome it as a feature of the human.

Tippett: Well, there’s a spiritual, theological statement, if ever I heard one.

Hendren: Well, and, Alasdair MacIntyre, who’s a philosopher, famously said that the human body, the human animal, the human creature is a dependent, rational animal. So, dependence is part of a three-legged stool that makes us who we are. That’s almost like a metaphysical statement that we need each other. We could have an evolutionary biology explanation for that. “Well, we need each other as a kind of consequence. We make do when we cope by needing each other to cooperate.” But there’s something quite profound about how social we are, how frail we are, finally. How none of us escapes that kind of being in the subject position of both the giver and the receiver of help. That’s what we’re talking about.

[music: “Because of Cloud Cover” by Sanctus Music]

Tippett: Just getting immersed in your work also, and just this phrase, “independent living” that is now just a feature of society. An independent living facility. What that actually means is that there’s a lot of assistance, right?

Hendren: That’s right. That’s exactly right. [laughter]

Tippett: There’s a lot of help. It’s actually understanding that at certain points in life, a quality, or a feeling, a freedom of independence needs all kinds of support.

Hendren: That’s right. The Independent Living Movement in this country, which again was in that kind of ’60s and ’70s era, was a lot of people like Ed Roberts who was a polio survivor and used a chair all his life and a lot of complex medical equipment, went to UC Berkeley with complex medical needs, took up residence in the hospital on campus, and changed — in adaptive reuse of architecture — changed that hospital floor into kind of a dorm room, and was joined by a dozen other students with complex medical needs. This was unheard of, the idea that they could become students there. And they were the ones, among others, who launched the Independent Living Movement, which was not on campus anymore, but in a storefront in Berkeley, and now in all 50 states, a place where you can go in and say, “How can I outfit my kitchen to make it more usable by me if I’m using a chair or something else?” But also, “how can I hire,” — as you said — “assistance? How can I find a personal aid to help get me dressed in the morning and to the bus stop? What’s the just-in-time kind of assistance that I need?”

And for those people, at that time — these were polio survivors, for example — those were people who were at home, went to school at home, were not in the public eye, and were treated and really rendered as just medical patients, full stop. That’s all they were. And so, independence for them really meant — and they were careful to say, it doesn’t mean doing everything for ourselves. It’s not self-sufficiency, but it’s self-determination. That’s what Judy Heumann said, who just passed away this year, famous act — So, they were at that time trying to say, they were doing the positive assertion of independence, is what I’m saying. And so, the twin of that is worshiping independence above all. So, we’re 50 years from that moment, and there’s a paradox to live with.

Tippett: Culturally that’s also kind of how we’re inclined to want to interpret that.

Hendren: That’s right. And I think people kind of romanticize like, “Well, yeah, it’s really interdependence and whatever.” And I think there is still a question in the air which is that, what about just the plain fact of dependence?

[laughter]

Tippett: What if we just called it dependent living? And that was …

Hendren: Seriously.

Tippett: …an honorable thing.

Hendren: Seriously, it’s so true. I wonder if it’s — in an American context there’s just so much about, we all know this frontier spirit and that kind of individualism, which again, we wouldn’t want to romanticize the absence of independence and choices and so on. But, I think we can all also point to the kind of widespread atomization and loneliness and all kinds of social phenomena we’re living with now. That is sort of peak independence. And in the design world, I see so many young engineers and designers who are designing for aging, and the only good they can imagine is for older adults to hang on to every last scrap of independence that they can, because that’s a young person’s idea.

Tippett: Or it’s a total orientation. That’s shaping things and maybe warping things. What if it was graceful living? What if it was graceful living and we just decided how we were defining what a graceful life is? And it wouldn’t be without need, and it wouldn’t be without care, and help, and support, and community.

Hendren: That’s right. There’s probably a role for social robots and for aging in some places carefully done. But, I’m much more just entranced by this Dutch nursing home that, through a set of architectural remodeling changes, figured out they had extra room at the end of their hallways, and they let college students now live in the nursing home with older adults in exchange for 20 hours of work on that campus. And to me, that kind of intergenerational living — adaptive reuse, take an extent resource, mix people together who don’t nominally have things in common — that’s an elegant use of design. That is thinking, what is on offer here? Oh, conviviality, mutuality, reciprocity, all the things that make life worth living. We could use our very best minds and smarts and tools at all scales for those kinds of things too, instead of equating dignity with, “Let me never need anybody again.” That’s a really sad life.

Tippett: And something that you so — you’ve kind of pointed at examples of this as we’ve been speaking — but when the reality of need is just acknowledged, then there’s so much possibility for creativity. And you talk about — another kind of animating question for you is: what shall we build? And there’s so much contained in that question for you. And that — and I think this gets at what are our underlying, what’s our underlying orientation, our values, our assumptions — there’s certainly an impulse in western medicine and in western culture to fix things. To fix it, and also to come up with a device. We like devices, a medical device, and also we can build such extraordinary devices these days. There’s such creativity there.

But, you talk so much about, again, if we honor the reality of need, what you see all around you as you are engaging in the built world for all kinds of bodies are these brilliant adaptations. And you say an everyday engineering ethic that people can cultivate in their lives. It feels to me, when I read you, that that’s happening all around us. And I don’t know that it’s something that everybody has visibility to, that’s happening in our world.

Hendren: I think that’s right. I’m not really a designer in the traditional sense. I’m more of a design researcher where I’m trying to — I do some collaborations and make some things — but I’m more of a person who’s trying to shine a light on the design that’s already going on in the world. So, things like — I have a curatorial project, like a digital project called Engineering at Home, and it’s nothing more than the collection of 12 or 15 low tech tools that a woman made for herself or with partnerships. Her name’s Cindy and she became a quadruple amputee. So, she is now missing most of the digits on both hands. So, she has a little bit of pincher grasp on one side, but uses two prosthetic lower leg limbs. So, she needs a series of objects to make life work. And she was one of these people who qualified for an $80,000 myoelectric arm and hand, prosthetic arm and hand. And she was very grateful for it and her insurance paid for it, all this stuff. Went and trained on how to use it. But, it is now collecting dust in a closet, because it’s heavy and it’s hot, and it doesn’t actually get things done the way she needs.

So, instead of that, she’s using cable ties that help her pull open the drawers on a dresser. She’s using tweezers to pull out her earrings out of a jewelry box. She worked with her same prosthetist who got her that fancy arm to build a little cap, little silicone cap, that fits over her residual hand and has a fork attached in it just so. And it was made for just under 10 dollars or something.

Tippett: Right, right. [laughs]

Hendren: And none of this is to say, “Oh, that means all high-tech prosthetics are bad.” It’s not. It’s just that, as you said, we have so much extraordinary technology. What we mean by extraordinary is, it’s novel in its materials. It is optimized and efficient in using things like circuitry and carbon fiber, that it does engineering-y impressive things. And that is really true. And for some people, those tools are transformative.

But, meanwhile, there are, in the garages and living rooms and kitchens of the world, people doing all kinds of inventive things with stuff to make their bodies move through the world. And nobody would look at Cindy, typically, in the kind of popular magazines of Make or DIY culture and say, “Oh, there’s a hacker, maker type.” People don’t think of senior citizens in the suburbs like that.

And that project, it’s a collaboration with an anthropologist, Caitrin Lynch, and myself. We were trying to just show this spotlight and say, “The material culture of disability is truly everywhere. It’s low-tech, medium-tech, high-tech.” Is scale a factor? Certainly with those big 80-thousand-dollar arms, I get it. But, meanwhile, we might partner with each other to make more things that help us do the things that we want.

The most meaningful object in that suite of things is that same little silicone cap that has a ballpoint pen on it. Because, Cindy went to her prosthetist and said, “You know what matters to me? I want to write thank you notes.” And she doesn’t have to do that. She doesn’t have to do that. She can speech-to-text on her iPhone, but she really wanted to. That was the thing that was going to make her feel like I am recognizably me with this altered body. And I just wanted people to look at that and say, “Oh my goodness, my uncle used to do that too. Oh, I had never thought of that particular idea.”

And just to see that there’s just such a diminishment story of disability, and even in the prosthetics, it’s like, “Here’s how you cope or overcome.” And people are just learning. That’s what’s happening. People are learning. We are learning through ties, obligation, constraints, all those things are actually modes of creativity if we see it as such. There are real hurdles, but it’s creativity, too.

[music: “Morning Arrival” by Sanctus Music]

Tippett: I think one of the most fascinating subjects of all — and talk about big-picture philosophical questions — is time. The meaning of time, the nature of time. And I’m so intrigued also about how you talk about time. Here’s one thing you said, living with questions about time and talking about your son Graham and the diagnostics of his delays, but more urgently, the unknowns about his future was the loneliest feature of our early months. And you also said, “It has been Graham’s singular creativity, his adaptive workarounds, his enigmatic learning curves that have wrested my husband and me from the grip of rigid time.”

Hendren: That is right. The gifts of sharing life with all three of those children is so manifold. And, again, I would not say — Down syndrome is neither the biggest feature of our family life, but it’s also a formative part of it in this way of saying, who are we to one another? We are not projects, children are not our projects. They are to share life with. And Graham is quite proud of his schoolwork. He is buoyant, and connected, and engaged in school in a way that just has no relationship to testing and so on. So, people will often say, “Yes, and what happens in adulthood? Schooling is this very particular moment.” And they’re correct. I’m working right now, I’m thinking about collaborative housing and all kinds of things, because why? Because to be vulnerable in time, that is Graham’s chief vulnerability and disability, that he is not pacing through school in a way that makes him into an economic citizen. That really is what we’re talking about. It’s quickness and speed in order to be recognizably productive and therefore valuable as a taxpayer and a worker. The disability is needfulness on the state and also needfulness on other people in a distinctive way.

And so, that time, that atypical way of maneuvering through time, yes, has helped all of us in our family to see what are we attached to in our worth and what will we do? How will we build the kind of lives that we want? Not just for ourselves, but in our communities where economic worth is one piece of who many of us are, but where the human family is a much bigger thing.

“Crip time” is this term of art in disability studies that I learned from other disability scholars. And it is that acknowledgment, the kind of slowness that comes with a lot of conditions — aging, but also maybe maneuvering with gear. And again, making friends with that slowness and trying to ask ourselves, “Well, what is the hurry about? Do we want our lives subsumed by our economic worth?” Again, none of this is to say that we don’t, in a realistic way, live in a time in which we work for money. Yes, I get it. But, the invitation is also to ask what are our lives about.

Tippett: For this season that we’re doing of the show, we’re focusing on the body and on embodied experience and embodied intelligence, in part because we’ve entered — for many of us, it felt like it came suddenly into this new technological era of AI. And I’m interested in how the new AI is, in fact, a student of us, and, but, it is a student of us on the internet.

[laughter]

Hendren: Yes.

Tippett: And so, I feel like — and to state it positively, again, as an opportunity — we might take that up as a calling or it might compel us to really think deeply about what it means to be human in the fullness of that. And what is the intelligence and creativity that lives in our bodies and that is really beyond the visibility of this technology, and how do we really honor and cultivate that? And so, I’m curious — because you’ve also worked, as you said, you were at the Olin, you were kind of an artist at the Olin College of Engineering for a long time, you work a lot with engineers — and I’m curious about just your vantage point of where you sit in terms of your interests and your expertise, this vantage point of how the body and the built world and disability, how is that infusing your reaction to the emergent AI in our midst to this kind of new development in our lives with technology, and the questions you might be asking?

Hendren: Like everybody I’m watching as these things emerge, and on a given Tuesday or Thursday my ideas change for sure, trying to figure this out. I will say I’ve certainly seen the way that digital technologies have been really life-changing adaptive tools for people with disabilities. So, things like smartphones, and I mentioned speech-to-text, the fidelity of which has gotten so much better. We have reason to think that at that low level, amplified assistance mode, we have reasons to think that that will also be adaptive and as an assistance tool for everyday problem-solving and so on.

I think as somebody who thinks a lot about cognitive disability and spends a lot of time with people with intellectual disabilities, I am really skeptical of the way that artificial intelligence bundles together a narrow idea of what intelligence is, and what it means is, what is a pattern finding machine that can also average and spit out an optimized new set of patterns from those patterns. And the idea that processing power is the mark, the quick processing of those patterns is the sum total of intelligence.

And I know that people are sort of like, “Well, no, we’ll feed this with affective and psychological helps.” That stuff I’m dubious of. If you look at, again, that it’s averaging material that it’s got in front of it, but that is the extent of processing. It is quite quick in a wonderful way. I’m sure it will find all kinds of new data for things like rare genetic diseases and highly bespoke treatment on cancer. All that stuff’s really exciting. I just think we’re forever calcifying this idea about what ability really is. And when I spend time with people with cognitive disabilities who don’t use verbal language, for example, and I think about — I just wrote an article that’s coming out in December about an artist’s kind of matching program, placing artists in a day center for adults with significant cognitive disabilities. This is in Scotland.

Almost no language is exchanged, and they spend time together finding common interests that are sensory, light, sound, tactile, textiles, all kinds of things. And the artists aren’t there to try to therapize these people. They’re both really interested in, as one artist said to me, pure qualia, the experience of being alive, and they’re trying to make a human connection where they can be made. And I suppose this will sound really romantic and untechnical, but I do think that there is just something going on there that defies that kind of processing power, intelligence paradigm.

Tippett: Absolutely. Even large language models can’t read something that doesn’t really rely on language.

Hendren: That’s right.

Tippett: So, if I just ask you just the notion of intelligence and the intelligence of the body and your life with Graham, where Down syndrome is called a cognitive disability, but intelligence has so many forms. Where does that phrase take your thoughts?

Hendren: Well, I suppose it takes me partly to those graphs that claim that there’s data and inferences and knowledge that becomes wisdom as though wisdom naturally proceeds from the accumulation of, again, in processing patterns. And what I see in Graham is a kind of wisdom about the enjoyment of one another. All the things that so many chattering classes folks say about trying to get to the simplicity and zen and essence of life. [laughter] And I think like, well, I know somebody who’s extremely good at that, and it’s not because he’s “simple.” That would be wrong to say it too, but there is a kind of presence and enjoyment of presence and an accepting of the giftedness of life that is inherently wise. And it doesn’t come from knowledge. It doesn’t come from the mathematical accumulation of processing power and, therefore, the rendering of something that’s monetizable.

It comes from what it means to relate, to enjoy, to take in, to pursue interests. That those things are, again, some of the things that make us the most alive that we’re trying to get past, ultimately, that categorizing, classifying brain.

[music: “Origin Story” by Sanctus Music]

Tippett: There’s someplace else in another interview you quoted a theologian, and I didn’t catch the name, about cultivating an openness to the unbidden, which also feels like a mark of wisdom and aliveness. Could you say a little bit of that?

Hendren: That’s William May. And here again, I think — so he’s talking about, yes, the unbidden as constitutive of the good. So, the unchosen features of our lives. And here again, I think at least in this country, in a contemporary way, there is a kind of romanticization of interdependence. And we say, “Well, we need each other and let’s not overdo it with the individualism, mutual aid, and so on.” But, I see people kind of hedge and say, “Well, as long as you’re choosing the people to be interdependent with.” And I always think that’s not how it works. Obligation, in other words, is seen as diminishment.

People can’t imagine that my two neurotypical children who again are — Down syndrome is not the story of our lives like we’re doing all kinds of other things — they can’t imagine that my two children might actually have a richer and more fulfilling life in their adulthood with Graham, who yes, will place some obligation on them. And a lot of people say like, “Oh, that’s nice for you now.” But, there’s a very eugenic logic in the way that people think about this stuff. “How could you burden those two other children?”

They cannot imagine what it’s like to share life with somebody like Graham, because they cannot imagine his gifts. They cannot imagine his giving that. So, in other words, did I choose Graham in the sense that — you don’t order a child from a restaurant, the one arrives — but saying yes to that when I did have a choice, but saying yes to that, it played out differently in my pregnancy and stuff — but saying yes actually opened up all kinds of interactions, family culture, insight into the world.

And so, the unbidden, I think — I think the mythology of life unfettered and only driven by choosing and optimizing. And again, that’s the kind of AI thing, that choosing, optimizing, selecting for patterns, clearing the path. For what? For self-actualization? I think history shows that the meaning of our lives is as much made by the demands that are placed on us and what we see in those exchanges as much as the choosing. I really do believe that. And I — yeah.

Tippett: No, go ahead.

Hendren: I just a — I think this repulsion about dependence is everywhere. In aging, our conversations about aging and end of life, I think I’m seeing in all kinds of bioethical spaces people trying to rationalize medical assistance in dying or whatever. In part because the idea that one would be dependent and therefore a “burden” to their family members would be a terrible way to end one’s life. And I want to be as absolutely clear-eyed and sober about the very real difficulties of that, especially when you think about healthcare systems and the way invisible labor gets played out. And yet my friends describe the end of their parents’ lives as some of the most meaningful moments that they shared. And again, it’s a kind of vantage on whether we can see even some of what we would call suffering as woven into the fabric of how we make meaning, how we flourish, as opposed to our self-reported changeable surface happiness. But, no, our flourishing, the meaning that we made.

Tippett: I want to read something you wrote and perhaps you would want to reflect a little bit on it. It’s very beautiful. “Who is the world designed for? Who in turn can grant or summon the power to do the designing or the building? And what can a body do, whether in life in our modest every day, or when conditions suddenly change, let these be our restless and generative questions, each of us in our many bodies making and remaking this adaptive life.”

Hendren: I think you and I share an interest in restless questions.

[laughter]

Tippett: Yes, and generative questions.

Hendren: Yes. I think it’s like trying to find an ever more precise language for the way that disability as a form of insight can collect everybody. That it can, meaning, collect us into that insight, that wisdom about the world, that coming into contact with needfulness and finding oneself part of something really big. And that is what I wanted to try to issue as an invitation. Not again, that our experiences are the same because, of course, our distinctions really matter. But that the restless questions is a form of staying energized rather than resigned about what is in our way right now, where the misfits lie, and what we might make together in the future.

I want this for design to be a portal to the questions of, those “what if” kind of questions, not just the questions of professional expertise, what could be built tomorrow, although I’m interested in that, but really, could we cultivate the kind of agency, and openness, and surprise, and joy and difficulty that disability makes evident? And could we recognize ourselves? And I really do mean “we.” I don’t mean that kind of as a rhetorical flourish. I really mean the collective “we” seeing disability as something really true and maybe seeing ourselves in it.

Tippett: And when you use that phrase “where the misfits lie,” I think what you’re talking about is where what is built and designed does not fit the actual reality of human bodies moving through it with it, living with it.

Hendren: Yes. And this is a foundational kind of idea from Rosemarie Garland-Thomson about mis-fitting, where she says, it’s like being a person with disability, she is one herself, is being a square peg in a round hole. But, that’s a really interesting kind of statement, not because it’s just like, “Huh, things don’t fit.” No. It’s because it’s unclear whether the square peg or the round hole is the site of the mis-fit. In other words, if my legs don’t walk, is it the question of a better wheelchair to augment my body? Or is it a question of, “Well, what’s available in public space on the exterior of a building?” Well, now our questions just got fractal in terms of where possibly we might intervene. And that’s what’s so interesting about design is that it’s not clear whether the body is calling for amplification and augmentation and perfectibility in the kind of fantasy way. Maybe some really good tools. But also what shapes and sounds and textures of the world might just shift a little, be more flexible in the way they’re joined together.

[music: “Eventide” by Gautam Srikishan]

Tippett: Sara Hendren is an associate professor in the College of Arts, Media, and Design at Northeastern University in Boston. She previously spent nine years teaching at Olin College of Engineering. Her book is What Can a Body Do? How We Meet the Built World. You can also find some of her short pieces of writing on her website, sarahendren.com. Her newsletter is, undefended / undefeated.

[music: “Eventide” by Gautam Srikishan]

The On Being Project is: Chris Heagle, Laurén Drommerhausen, Eddie Gonzalez, Lilian Vo, Lucas Johnson, Suzette Burley, Zack Rose, Colleen Scheck, Julie Siple, Gretchen Honnold, Pádraig Ó Tuama, Gautam Srikishan, April Adamson, Ashley Her, Amy Chatelaine, Cameron Mussar, Kayla Edwards, Tiffany Champion, Juliette Dallas-Feeney, Annisa Hale, and Andrea Prevost.

On Being is an independent nonprofit production of The On Being Project. We are located on Dakota land. Our lovely theme music is provided and composed by Zoë Keating. Our closing music was composed by Gautam Srikishan. And the last voice that you hear singing at the end of our show is Cameron Kinghorn.

Our funding partners include:

The Hearthland Foundation. Helping to build a more just, equitable and connected America — one creative act at a time.

The Fetzer Institute, supporting a movement of organizations applying spiritual solutions to society’s toughest problems. Find them at fetzer.org.

Kalliopeia Foundation. Dedicated to cultivating the connections between ecology, culture, and spirituality. Supporting initiatives and organizations that uphold sacred relationships with the living Earth. Learn more at kalliopeia.org.

The Osprey Foundation — a catalyst for empowered, healthy, and fulfilled lives.

And the Lilly Endowment, an Indianapolis-based, private family foundation dedicated to its founders’ interests in religion, community development, and education.