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Sara Hendren Wants Disability to Be "Right in Your Life and Lively and Unfinished and Restless in All of Its Questions for Us”

The Resonance Test 54: Sara Hendren

October 22, 2020
by Ken Gordon
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People, generally speaking, have the wrong idea about disability… or so says Sara Hendren, author of a sharp new book called What Can a Body Do? The Olin College professor insists on making us see disability in a more human light, and learning from our improved sight. She writes, for instance, that “disability is not a fixed or permanent label that belongs only to some people; it arrives for each of us,” adding that while misfit situations—“a disharmony that runs both ways, body to world and back”—are inevitable, they should ideally be met with resilience and creativity. (Her book teems with story after story of such meetings.) In this Resonance Test conversation with producer Ken Gordon, Hendren expands on her book and explains, among other things, how misfit scenarios don’t have to be isolating but can, in fact, build community. She talks about aging—“In our own country old age is a really an under-imagined moment of life. We tend to make it super passive, and we tend to patronize older adults in a way that's pretty shameful”—and about the idea of incessant adaptation: “Adaptation is the fundamental state.” Above all, Hendren’s words enjoin us to pay attention—to our bodies, the bodies of others, and the environment in which they move about. The point of doing so: Striving to give everyone access to a more pleasurable life and even a richer language. “My hope is that by paying attention, we get better language, meaning, non-jargony, non-expert, non-technical language but just language that is ready to hand for the things in our lives.”

Host: Kyle Wing
Engineer: Kyp Pilalas
Producer: Ken Gordon

The Resonance Test 54:Sara Hendren

Edtited Transcript

Kyle Wing

Hello, and welcome to The Resonance Test. I’m your host, Kyle Wing from EPAM Continuum.

Before we hop in today, a quick note. If you’re listening to this in the US, Election Day is right around the corner. Voting is actually underway in many states, and we’re simply asking you to please, please get out and vote, vote early, send in your mail-in ballot, do what you have to, but please vote.

Ok, let’s get into the show.

2020 has been all about redefining normal. I can’t count how many times I’ve heard the phrase “new normal.” It is true, these times are decidedly unique, but it’s possible that nothing before was ever normal (I’m using air quotes here by the way). What many might have understood as normal, was really far from it.

Our guest today is here to help us interrogate what normal is and more importantly what it could be, through a lens we might not often consider: the built environment.

Sara Hendren is an artist, design researcher, writer, professor at Olin College of Engineering, and now author. She is co-founder of the Accessible Icon Project and leads the Adaptation and Ability group. Hendren’s work has been exhibited around the world and is in permanent collections at the MoMA and the Cooper Hewitt Museum. Hendren succinctly describes herself as a humanist in tech, but that seems much too modest.

Her book, What Can a Body Do? How We Meet the Built World is available at your local bookshop today. It tells stories about the misfit between our bodies and the world, stories about agency, empowerment, self-determination. But also stories that make us wonder why these gaps between body and world exist. In a time where nothing is normal, and everything is up for questioning, it is time we start rebuilding, restructuring, rethinking these gaps. As a review in The New Yorker put it: “As Hendren writes, disability ‘reveals just how unfinished the world really is.’ Her gift, perhaps, is to see that as an invitation.”

Today our producer, Ken Gordon, returns to the mic as interviewer. Listen as Hendren and he discuss the desired life, being extraordinarily human, and the connection between love and attention.

Ken Gordon

So I'd like to begin by talking about the universality of two ideas, disability and desire. You write that “disability is not a fixed or permanent label that belongs only to some people; it arrives for each of us,” which is a super profound thing to say. And throughout the book, you're talking again and again about people designing and living a desirable life, right? Which reminded me of this concept that everyone, in America at least, is entitled to the pursuit of happiness. And I think that both of these concepts are equally universal, but [they’re] not necessarily accepted or understood that way. Why do you think that is?

Sara Hendren

That's such a good question. And I'm glad that you pointed to desire. I didn't know if you meant to say “design,” but I'm glad you pointed to desire, because that's really actually the deeper theme there. Absolutely. In the first case of disability, I think I join a whole series of disability scholars and disabled people who've been saying for decades, “Our experience is a human experience.” And that's something that I learned in the course of research. And that is just to say, nothing more and nothing less, it is quite simple—and also, but not easy, right? It is quite profound that to think seriously and to take seriously the idea that we begin our lives quite dependent on one another, as in early life, and we, throughout the course of our lives, we traffic in and out of experiences of short-term dependence, or maybe even acute dependence. So if people think of themselves as non-disabled, if they're listening right now, think though, again, about just the times that you've spent… I get a couple of emails every year from people who are using crutches for six months, and the way that that changes the way you operate in the world, and what you can do and what you can't do… but also bouts of long-term depression. Folks tend maybe not to think of all the things that can be organized under the category of disabling illness or have a mismatch between their bodies and the world. So in the same bookended way, just the fact of aging alone means that our capacities change, and the kinds of things that we can do in the world also change, and that the mismatch, or the misfit—that's one definition of disability that RoseMarie Garland-Thompson, from the field of disability studies offers to all of us—the misfit, the square peg in a round hole, as she says, that runs both ways. Meaning: Disability is not only a feature of our bodies, in the sense that we carry vulnerability in us just over the lifespan full stop, but also that the built world through which we have to navigate, in its very atomic and material structures, makes some ways of moving around the world possible, and others impossible or quite full of friction. So what that means is that, if you are someone who's aging, you have to contend with a world built of stairs, to say nothing of someone who's using a wheelchair, but we're all connected in that misfitting. And it just is a matter of when and to what degree and in which ecosystems of our families and our workplaces and so on. But that disability, we can think of it as universalizing and we could sort of lament that fact, some of the capacities that we may lose or that we wish that we had, or we can say—and we can say—that actually makes us human, and it connects us to one another. So it returns us to one another, just needfulness, the needing of each other throughout our lives. So I wanted the reader in the book to sort of see themselves, no matter the state of their embodiment. And then this other idea of desire and a desirable life. That is the most foundational question of the book, which is to say: What can a body do, but also what is a good life? And what are the things that we should desire, that we can do with our bodies and that we can do in the social worlds that we build? I think a lot of times people think of design as problem solving and just taking a use case and a challenge and sort of wielding a hammer to find its nail and to fix it. But I've tried to open up the design that I've seen, especially among disabled people where disabled people meet the built world, to see that what we wish for is also the property and the mandate of design. So in other words: What's the world that we want to build? Okay, let's start there. What does human thriving look like? What does a desirable life look like? And then let's build that one, not just the limited and narrow view of problems to solve.

Ken Gordon

Yeah, I love it. I mean, it's the idea of design as desire-solving. And I'm glad you mentioned the idea of the misfit relationship to the world, from Rosemarie Garland-Thompson. And I like your gloss on it, which you say is a “disharmony that runs both ways, body to world and back,” right? This kind of conversation that occurs. So that sort of dialogic relationship that people's bodies have to the world.

Sara Hendren

Yeah, that's right.

Ken Gordon

And I thought about a lot of the phrases in your book and it seems like figures of speech matter a lot in changing people's perceptions, and sort of goading them into action. Can you talk about figures of speech and the role [they play in] getting people to rethink the idea of disability?

Sara Hendren

Yes, thank you for that question. I mean, narratives, stories, and speech and representation, all those things matter when we're talking about trying to reach an audience that hasn't yet maybe understood themselves to be part of a kind of broader political movement. So in this case, I'm just trying to translate a lot of the work that's been done before me. The scholars. The disabled people doing design work themselves. [The book's about] ideas and disability in an academic sense that I was trying to translate by turns of phrase and choices of metaphors and, most of all, in stories. I was trying to bring that home to a reader who is not going to go seek out those academic sources. And for a reader who, again, might think of themselves as like, “Oh, well, disability is an issue that maybe belongs to other people, and maybe I should kind of care about it….” I'm trying to say, “No, it's right in front of you. It's in it's in your life, right? It's in the stuff that you use in your kitchen every day. It's in the streets that you walk on. And it is in your concerns, you and your family and your loved ones and your communities. It's all there. Those are human concerns.” And so I wanted, you know, stories above all are… we know this from psychology and the science of it… that we are hardwired for stories. We need stories, our own story, to have coherence—that is part of our wellbeing. It's really in our biology. But we also then look in fiction and nonfiction, we look at the stories of others, to help us marshal resources and make choices when our lives change and when we come up against conflicts. And so I wanted stories above all to be at work in this book. And people, if they read it, will read about a man with one arm who is tasked with changing his newborn baby's diaper, but also a woman who becomes a quadruple amputee at age 60 and has to figure out how to rearrange her household around her, and a couple with a baby with a rare genetic disorder [and how] they have to think about building a chair that would be just right for him and—and dozens of other [stories]. And I wanted for people not to say, “Oh, who are these people who are so unlike me?” But to do, again, that work of stories of like: “Where am I located in this very narrative? And if I take on their point of view, what might I do differently?” But also what you're talking about in terms of phrase? Yeah, I'm working as an academic, but working in a kind of journalistic way to [ask]: What's the richest, most vivid, most friendly and approachable voice and language I could take for these really complicated ideas? Because if I choose the phrase that you can understand, will you come along with me on this incredible kind of rich resource of overlooked insight? I think that disability—I've noticed as the mother of a person with Down syndrome, who's now 14, and living alongside a number of family members with disabilities—that disability suffers a little bit from a kind of either a sentimentality or people need to go straight to kind of inspiration, as though people with disabilities are there to make them feel grateful for what they have. Disability often gets made into an object lesson, and I wanted it much more to be right in your life and lively and unfinished and restless in all of its questions for us, because that's where the energy of connection comes from, I find.

Ken Gordon

That is an awesome thing to hear, because my next question is about loneliness and community. One of the one of the things I took from your book is this idea that disability can be a thoroughfare to community. Traditionally it's been thought of as an isolating factor in people's lives, But you found so many people, so many situations—like the Rolling Quads, the students DeafSapce, the residents of Saling House, the service warriors of EPIC—that prove otherwise. Were you thinking about how your book might create newer communities amongst your readers, and how it might inspire new communal connections that didn't exist before people picked it up?

Sara Hendren

Boy, I hope that will be the case, right? That people will see themselves and see the richness of community there. I mean, this goes back to your sort of positing that desire is there at the heart of the book and that desire is a big part of design. Meaning: A lot of people would be surprised to hear that disability actually creates community. [That it’s] not in spite of their those conditions, but because of those conditions, that people find one another, sometimes who are like themselves. So you reference DeafSpace and Gallaudet University, which is an all-deaf campus and hard-of-hearing campus in Washington, DC, [that] has been around for a long time, but people might be surprised at some of the really rich cultural features of what it means to go to college with other people who are like yourself who are deaf. But I think the other thing is that community can be created, if we are… Jane McAlevey, who's a labor organizer, talks about the difference between being mobilized by the energy to act alongside people with whom you already agree and see yourself, you know, in their likeness. But being organized by an idea is actually finding common cause with people who are unlike yourself. And I hope that the book has an organizing kind of capacity, in the sense that you say: “Oh, I'm not like these other people, but I share the kind of desirable world that they're articulating. And I might actually find pathways to my own communities if and when, again, my body changes.” I certainly found that for myself, my life is full of people who would call themselves disabled people—not just people with Down syndrome, but lots of people with all kinds of capacities—and that has been part of my own desirable life that that we would say, is generally desirable. Meaning: I meet people unlike myself, who show me the world in different ways all the time. Some of them show me the world and what it could be [or] show me [an] alternate world from my own. That is human flourishing. That's rich community. That is surely what we want is connection.

So I did want the book to bring together all these different scales of design, but mostly people at different moments. So people in their houses. People in their workplaces. People in long-term residences. So that, yeah, the reader might see [and say], “Oh, yeah, I can imagine myself there too, if things were a little bit different.’

Ken Gordon

One of the things I picked up [from] the book, I felt really strongly, was the sense [of] how much innovation and heroism and courage is required to sort of live these lives, to find the way to that sort of desirable life. I think a lot of people would never see that. And I think having all those stories, sort of piled on top of each other, has a really cumulative effect.

Sara Hendren

I'm glad you said that because, just to push back a little bit on innovation and heroism, I think that's a really interesting moment. We think about Chris, who was born with one arm and who finds himself at the changing table with a newborn baby and has to change his diaper. When I'm with Chris, I experienced that, yes, as courageous and as inspiring. Why? Because I'm a two-handed person who just hasn't been able to imagine life with one hand, but I’ve spent actually a lot of time with Chris. And what that has taught me is actually to see both, yes, the extraordinary-ness but also the ordinariness of adaptation. I'm hopeful that that's actually really the message of the book, and [it’s] what I hear from disabled people all the time. It's actually not to be put in that abstract category of heroes and courageous and inspiring folks, but instead to be on the human plane, which is to say, you know, if your capacities change tomorrow, what we know is that the body is deeply adaptive and plastic. I had a friend who lost an eye in a car accident in adulthood and her brain did all the knitting together so that she sees in stereo through one eye. Our bodies would do that, too; its ordinary to be adaptive, it is also extraordinary, but insofar as being human is extraordinary. But I think letting Chris at the changing table doing that adaptive work of creating a little prosthesis—just so listeners will can picture it—he doesn't use a regular universal prosthesis, no high-tech cyborg arm, but instead he rigged up a very clever prosthesis just for changing the diaper, and that is these felted cords and little loops that hold his baby's ankles, so that he can suspend those ankles and then change the diaper with the other hand. Built for 10 bucks, right? And you see that and think: “How clever and how nimble and just-in-time, that is also true.” But it's one of hundreds of things that Chris does, and it's hundreds of things that any of us would do, were our bodies to change. Now, when people write to me, you know, again every year, and say; “Oh, my God, I've broken my wrist and how am I going to cook now?” Of course, we will be faced initially with that friction of like, “I can't do this, I cannot do it.” And yet, we would. The ordinariness of adaptation is that we would, over time, find a way to do that. And I think, to me, that's one of the most galvanizing features of being a body. Which is to say: Adaptation is the fundamental state. We're all doing that all the time. And I wanted people to see that in Steve Saling, who has advanced ALS. That's a hard diagnosis that a lot of people cannot picture surviving. And yet, Steve is also deeply adaptive and wedded to machines in a really elegant way, if people can see it as such. But often they don't because they can only see diminishment. So instead of saying: “How extraordinary, I'm going to be grateful,” or “How extraordinary, I'm going to be inspired,” you could say, “Oh, my goodness, I live there, too. I'm on that same plane. I live in a body that has needs that extends itself with tools. And that's also ordinarily adaptive.”

Ken Gordon

Let me ask you about driving, disability driving, because I kept waiting for the chapter on driving to come up. Let's talk through that. We have been thinking a lot about aging and how that gets in the way of one's ability to drive well and safely. And we've been thinking about even the difficulties that families have, just talking about it. And so I was wondering: Have you thought much about how aging changes the way one can get around using a car and that sort of interaction work?

Sara Hendren

Yeah. And when you say families have trouble talking about it, it's all the stigma that comes with: “Should you be driving anymore?” Feels like a question like: “Are you now incompetent, and therefore less of a human being?” It's a worth question.

Ken Gordon

That's right. And part of what we're looking at [is] using different technologies as ways to keep people safer and on the road longer. And even really sort of monitoring how they're driving, so they can understand objectively what's going on. And then when they have conversations with their families, there can be a sort of a non-emotional basis for talking about it.

Sara Hendren

These are really important questions to engage at the design and technology level that you're talking about. And a lot of times those technologies are thinking about… it's a broad notion of aging-in-place. So they're thinking about: “How do I preserve the kinds of autonomy that I have in adulthood? Even when if my eyesight is sort of less acute, or my hearing is less than it used to be?” And so you're thinking about: “What are the gradations of support that you could build in so that driving remains a feature of life?” So there's so there's that. I'm for those technologies in the sense that [I approve] if they're providing for an extended, rich life in older age. And certainly in our own country, old age is a really under-imagined moment of life, right? We tend to make it super passive, and we tend to patronize older adults in a way that pretty shameful, I think. But there's a deeper conversation there, which is, I think, at the heart of certainly any American conversations about aging, and that is about what does the car represent. And it's like: “Can we also then work on a different framing of a life that has some dependence in it?” Because when people are resisting, you know, giving up the keys to driving, they're resisting an idea that they have become more dependent. And instead of thinking: “While dependence is part of a desirable life, it’s: ‘Dependence always means loss, right?’” And there again, disabled people have for a long time said there's a way to be the architect of your own life, there's a way to have agency, there's a way to have choice, there's a way to have self-determination is what the Rolling Quads would have called it. And the civil rights leader Ed Roberts. Judy Heumann, who's still doing all kinds of disability work, they would say that independence, broadly conceived, can contain help in it—so maybe no longer driving—but that doesn't have to mean loss. So I think there's a conversation to have and then there's this other kind of philosophical conversation to have about how we're going to frame what life worth living. And what gives us our dignity and what gives us our getting-up-every-day. We ask too little of old age in this country, don't you think?

Ken Gordon

Yeah. Say more about that…

Sara Hendren

We imagine that there’s work, and then your work is your worth, and then you stop and you retire, and then you, what?, you enjoy your open day or whatever? Of course there are plenty of people who participate in helping to raise their grandchildren, but I feel like there's all kinds of extra resources that older adults have that aren't being tapped, because there's this idea that they are going only to live with people who are their same age. There’s not nearly enough creativity built around mixed-age kind of encounters and engagements. One of my favorite projects ever is called Speaking Exchange. And it's nothing more than matching older adults in [an] assisted-living facility in Chicago with teenagers in Brazil, who are looking to practice their English. It's just a video connection; there's nothing really ingenious, technologically, about it. But the genius of it is seeing paradigmatically what's on offer as a resource, right? So these older adults have all kinds of things to offer in terms of the vernacular of English, and these young people in Brazil are looking for that vernacular, not just the grammar lesson. They're looking for language in use. And so there's a wonderful little film about it, and it's about the relationships that that follow. That's designed not only for preserving independence in that narrowly scripted way—What can I do for myself and by myself?—but also designing for connection, which we know gives us a desirable life. It's so bizarre how all of it—tech, design for aging—assumes that preserving independence is the only good when we know what gives us wellbeing it's actually relationships, right. So why wouldn't we design also toward those things?

Ken Gordon

Oh, yeah, I mean, one part of the project, which is called SilverKey, is that it allows you to build a network of other drivers so that you are not necessarily driving on your own. And you can sort of develop these friendships and relationships that can still get you where you want to go, without you being behind the wheel.

Sara Hendren

Yeah, yeah.

Ken Gordon

That’s a community.

Sara Hendren

That’s right.

Ken Gordon

Tell our listeners about the dementia community in the Netherlands. I will not try to pronounce that. I will let you do that.

Sara Hendren

That's a hard one. But I spent some time in the Netherlands. I do have a little bit of Dutch. It's Hogeweyk. So it looks like “hog awake: h-o-g-e-w-e-y-k.” And it's a dementia village, right? A planned mini-city, actually. Like a locked facility, if you can imagine this, in Weesp, in the Netherlands, a little town in the Netherlands. It is a nursing home, but [one] that actually has storefronts in it and a working restaurant and a gym and a hair salon and a theater. And it has streets, actually paved streets, and a big plaza. So you go in through a double set of locked doors in the way that you would a memory care center that you're thinking of in a clinical setting. But what opens up to you is this little town. And it's just extraordinary—here, again, it's extraordinary and ordinary—that the folks who worked there a couple decades ago, looked around and thought—this site had been a regular nursing home with like a long bay of rooms just like you think of in memory care—and they thought: “If we were to find ourselves with the condition of dementia, Alzheimer's, whatever it is, Is this the place where we want to live?” And the answer was a resounding no. And they thought: “Okay, well, what are we going to build? What are our principles? What's the vision for what life could be like for these folks?” And the architecture then proceeded from that vision. One of the principles was “favorable surroundings,” but it was the most imaginative interpretation of favorable surroundings that they could come up with. When you go to live there, you live in a kind of apartment with three or four other adults and you have a working kitchen, including all kinds of kitchen implements. And you go to the operating grocery store there and help to prepare meals insofar as you're able. You can also go to the restaurant that's open for lunch and for dinner every day there. And what's interesting about that is that the restaurant is both private and public. So it is semi-porous. The public from the town of Weesp can go and have a meal there, too. Talk about an imaginative way of including people who in most cultures have been just absolutely cordoned off to a kind of secure facility as though they're no longer humans. That they build this restaurant around the idea that people will be wandering in occasionally and not entirely secure in their grasp of the real, but the waitresses there and the folks who eat there understand that that's part of the bargain. I saw a mother there with young children who was just modeling a way to be humane and kind with folks who are in a condition of their lives that has humanity and dignity in it and also has needs in it. It shouldn't be so extraordinary. They have visitors there every day at Hogeweyk asking themselves, “Could we redesign life for memory care in this way?” And remember that memory care is not just about a difficult relationship to time, but also a relationship to space. And so part of why you build the architecture to be the simulacrum of a town is to reassure people with that continuity of the life that they had before. So instead of having one all-purpose room in your nursing home, it's like: “No, no, it's really clear. This is where you go for music. This is where you go for the gym. This is where you go to get your hair cut.” And [this provides] the reassurance of that, of the feeling that kind of familiarity. And there are bikes, these beautiful side-by-side tandem bikes, because it is the Netherlands where bikes are kind of everything. So they've just thought of everything in terms of preserving that dignity and that humanity. And it shouldn't be rocket science, honestly. But the idea that design could also be treatment, to me was just fascinating. In our culture, we rely heavily on medicine, pharmacology, or clinical expertise, and we think very little about environments and surroundings.

Ken Gordon

It's amazing. I guess one of the interesting ethical parts of it is that it is a simulacrum. And you're sort of convincing the residents that they're living a different kind of reality than they actually are.

Sara Hendren

That's right. And Larissa MacFarquhar did a great piece in The New Yorker about that very conundrum. Sorry, go ahead.

Ken Gordon

No, I was just gonna say: Did you feel any sort of ethical uncertainty when you were thinking about it? Or there writing about it afterwards?

Sara Hendren

Certainly. And I asked my tour guide there about that, because we encountered a woman who was certain she was on her way to a neighboring town and was clearly confused about that. And my host did not correct her. Did not say “No, you're here at Weesp.” She didn't embellish that this [was a] sort of falsehood that this woman was under, but she also didn't correct her. And I pressed her on this and sort of said: “What about that? Are you aiding and abetting, you know, a falsehood? And are there trade-offs to that?” And she said, “Yeah, it's a complicated issue.” It's one of lively debate in the field. And again, Larissa MacFarquhar went right toward this in our own country, too. There's the caregiving debate about whether you sort of seal up and support people's fictions or whether you insist all the time on reality. It's a thorny bioethics matter. And they are engaged in that at Hogeweyk. They are not there to imagine that the town is somehow a real place. I think they would call it just a preservation of the recognizable familiarity of life before—which is a truth, right? It looks like the kinds of towns that folks in the Netherlands have grown up in. And so it preserves that sense of what they know. And I think to me, that's defensible as treatment.

Ken Gordon

Yeah, cool. One of the things I really loved [was] when you were talking about DeafSpace, you wrote [about] “the qualities of attention that DeafSpace practices, as its process of design.” When I read that I actually thought of your prose and the amount of attention you lavish on the language, which I thought was really useful and effective for me as a reader. And it made me think of the film Lady Bird. Have you seen Lady Bird?

Sara Hendren

I have seen Lady Bird. Yeah.

Ken Gordon

Do you remember the moment where Lady Bird is reviewing her college essay with the nun and then that says, “You write about Sacramento so affectionately,” and Lady Bird says, “I was just paying attention.” And then Sister Sarah Jones says, “Don't you think that maybe they’re the same thing—love and attention?”

Sara Hendren

Yes.

Ken Gordon

I want to ask you about that. Would you say a few words about your attention economy and what it means for you to attend to language, to the world, to everything?

Sara Hendren

Yeah. What a great question. And I really appreciate it, and I actually think about that all the time. That is: Attending as a form of love, in the sense that people think of design as a mode of expertise whereby people are quite concerned with how sleek the lines are and how dramatic and monumental, for example, the facade of a building might be. But really, design is this way of making material out of the index of ideas that are extant in a culture. Design is this way, if we draw our eyes to it, [that asks]: “What is the material language of the world?” Why do we care that we have wood furniture? for example. What's happening there, right? It's not purely convention. It's also partly that somehow surrounding ourselves with an organic material, a material from nature, does something about rooting us in nature, even when we're in a very sterile office environment. But the quality of attention means not pointing to that as like, “Oh, do I know who designed that table?” It's like: “What is the actual quality of the line and the color? And would you call it ‘warm’? Or would you call it ‘cool’?” In my classroom, I hand students a kind of word bank, to try to help build their literacy and their vocabulary for describing what they see. Because I keep saying to them, it's not enough to say, “I like it [or] I don't like it,” or “That belongs above my paygrade. That's somebody else's expertise, and therefore I'm going to reject it,” or “I'm suspicious of it,” or “I find it, you know, kind of highfalutin and, you know, elitist.” Instead, [I encourage them] just to say: “What is the quality of the thing? And how is it speaking?” And if we draw our attention to it and say, “What's the real word that we're looking for here? Is it warm? Or is it approachable? Is it friendly? How many gradations could we find?” To me, that's a form of paying respect. A form of extending the kind of lizard brain of our own consciousness out toward things that are unlike ourselves. The quality of attention that I wanted to bring in this book was to try to honor the stuff that I've been taught by people who took their time to show me the things that they built and to let me be in their intimate space with their mismatched bodies, or whatever. But I also find that my hope is that all cultural objects—so design, art, sometimes engineering, and certainly, hopefully, in books—are a bridge between one consciousness and another. That is our work, right? To extend from our own biases, our own myopia, and to say: “If I look closely enough and ask enough questions, and I ask you, ‘Did I get it right? Did I get it right? Did I get it right?’ Then might we find that connection. That talk about a desirable life—like that's what makes it worth doing, you know? My hope is that by paying attention, we get better language, meaning, non-jargony, non-expert, non-technical language but just language that is ready to hand for the things in our lives.

Ken Gordon

That’s the ethos of the of the literary world. It's not the design world. I've read lots of design books and believe me, there’s a qualitative difference between what you’ve produced and what I see elsewhere. So thank you for that. I appreciate you paying attention. Okay, something very personal and very quick. My back has recently started to hurt me. And I realized that probably it's because I spent the last six months reading on my couch and typing on my couch. Before that, I would get 10,000 steps a day when I went into the office.

Sara Hendren

Yeah.

Ken Gordon

Your book [suggested to me]: “Wait a minute, wait a minute. Maybe my body is creating a misfit between myself and the couch here, and my pack.” And so I pulled out a box out of the basement and turned it into a standing desk, which I'm talking to from right now.

Sara Hendren

Oh, my goodness.

Ken Gordon

I can't be the only person who's reading your book and saying, “You know what, maybe I need to apply a little bit of this to my own life.”

Sara Hendren

Yeah, certainly people are asking that. I just got an email from my sister-in-law yesterday—speaking of boxes—she was asking me about the cardboard furniture adaptations I profiled in the book, the Adaptive Design Association that builds out of cardboard. If you look at Chairigami, Chairigami builds—they got trained by the Adaptive Design folks—and they build desk toppers and standing desks and temporary furniture of all kinds, and I have my own desk topper out of cardboard, reasonably priced also. So people should take a look at that. My 10-year-old this morning is on a tippy stool, so instead of a stool that's got a flat bottom, it's got a little rounded bottom. He's neurotypical and find school pretty easy, but he's going to be spending a lot of time on that chair, trying to do school remotely. So that little tippy stool, just that rounded bottom underneath, allows him to shift his weight between his legs and it's actually much healthier. The ergonomics folks of the world, the PTs of the world, would say, for all of us, that movement is actually more natural for us in a seated position. And so right, it feels like your couch is comfy, but actually it's probably working at cross purposes.

Ken Gordon

Let's talk about probably the most important question I have for you, which is about your son, Graham, [whom] you include in the book. I felt like [his story] was the motor behind all of this. Would you mind sharing that story?

Sara Hendren

For listeners, I'd say just in bookends, [there is] a tiny bit in the beginning and then at the back and the last chapter, about my own experience with disability. Most of [the book] is about other folks and kind of touring around the world looking at in people's living rooms and labs and so on. But you're absolutely right that the engine of the book, and the insight, is my experience. I'm a mother of three children, but my eldest has Down syndrome. His name is Graham, and he's 14 now. And I have a couple of nieces on the autism spectrum and family members with chronic depression. So I'm familiar with kind of misfitting in the world for sure. And you're right that Graham's life and his deep creativity and his many, many gifts, which I would never be able to describe as diminishments—all that insight is the engine of the work. [I wound up] going back to graduate school as a result of this person coming into my life. Graham's life and his genetic status is rendered entirely as a risk and a defect, but he's a he's a human replete with human qualities. So I did want to find a way to let the reader know that I had skin in that game and also to speak to parents as one kind of audience, because I know a lot of parents write to me when their kids are getting a new diagnosis, or when their kids are struggling or newly struggling with anxiety or something else, and they're trying to ask themselves the question that my husband and I are always asking, which is: “Shall we help our child, support him, adapting his own body and his way of being to the world or shall we ask the world to move a little bit more toward him?” And neither of those things is exclusive. We have to do a little bit of both, all of us in our own bodies, and then among the people that we love. But he's in the end of the book in the clock chapter because developmental disability is an area that prosthetics didn't really reach. I mean, there's some really smart stuff with software and we had plenty of very clever eyeglasses and ankle prosthetics and gear and hardware. But mostly the misfit for somebody like Graham, with non-normative intelligence, the misfit is actually between his capacity to be an economic, productive citizen, a 40-hour-a-week salaried employee and what it is that he's actually good at. Those are the questions that I'm asking now, which [are]: “How do you build some social structures with some flexibility in them, that probably exceed the bounds of design altogether? That is to say: How do you shore up an idea of human worth that that doesn't rest on a kind of economic category?” I don't think any of us want to be valued purely for our economic productivity. So what's the language and the resources we'd reach for to re-establish those grounds? That's what I'm wondering.

Ken Gordon

This has been a wonderful conversation. Thank you so much. I have so many more questions to ask you but I've taken enough of your time and I thank you again, Sara, for visiting us today.

Sara Hendren

Ken, thank you, those were such good questions and I loved talking to you. Thanks so much.

Klye Wing

EPAM Continuum integrates business, experience, and technology consulting focused on accelerating breakthrough ideas into meaningful impact. At EPAM Continuum we’re very deliberate about the term “innovation”; for us, it means turning ideas into stuff that’s real. Because from our perspective, ideas aren’t really “innovative” until they exist.

Sara Hendren, we need more voices like yours, thank you for joining us today. All of the thoughtful questions today came from our producer, Ken Gordon. Kyp Pilalas is our sound engineer. And I’m your host, Kyle Wing, asking you to please vote. Until the next one, thank you.

filed in: customer experience, employee experience, patient experience, user experience

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