What can a body do? How we meet the built world

Technologists like to imagine how their work affects people, but that’s no substitute for truly knowing the real impact on lives, or better yet, understanding what people, especially people with disabilities, really want from their surroundings and community. In her recent book, What Can a Body Do? professor and designer Sara Hendren’s “aim … isn’t to throw cold water on innovation; it’s to recenter the people, behind the tools, who must work with their surroundings, their adaptations at least as miraculous as the technology that helps them.” (Katy Waldman, in her New Yorker review)

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WILL BUTLER: I’m Will, as you guys know. And I’m joined here today by Sarah Hendren. Thank you so much for joining us, Sarah. It’s wonderful to have you.

SARAH HENDREN: It’s great to be here. Thanks for including me. Good to see you.

WILL BUTLER: Absolutely. Are you calling in from Boston today?

SARAH HENDREN: Yes. In Boston today. Rainy Boston in late November. Yeah.

WILL BUTLER: How’s the semester going?

SARAH HENDREN: You know, it’s not an easy time to be a student or a teacher, I must say. And I’m watching my own kids, my own three children at home, and my own students, who are doing the very best they can, honestly. And they are teaching me all the time about adapting to difficult circumstances, which is part of our theme for today, right?

WILL BUTLER: Yep. That’s what it’s all about. Well, I wish it was, like, late night TV and I had that the big version of the book I could hold up in front of the screen because I’ve been just absolutely immersed in it for the last several weeks now. I go back and I read, and I reread. You have this wonderful new book called, What Can a Body Do? Congratulations, first of all, on that.

SARAH HENDREN: Thank you, thank you. it was a long labor.

WILL BUTLER: It’s really an achievement. How long have you been working on it?

SARAH HENDREN: I think– well, it started– it was like a glimmer in my eye probably in the summer of 2015 or something like that. And I thought that it might be at that time more of a visual-heavy catalog book. So kind of a tour through a number of technologies and then some commentary about them. And then I realized pretty quickly that the technologies themselves would date really fast, whereas the enduring questions and the long tradition of disability and disabled people meeting the built world in deeply creative and adaptive ways and what we learn from that, the kind of principles behind that adaptation to technology– that those were the enduring kinds of stories.

So really actively working, I sold the book and the end of 2016. So actively working for more, like, three years on it. And yeah, it’s been a steep learning curve ever since. But it’s built on 10 years of being a professor, a maker, an artist, a collaborative designer, and then along the way, meeting all kinds of people who were rebuilding their own worlds and doing a lot of deep reading in disability studies, and being mentored by people senior in the field and realizing, oh, I bet there’s room for a book that would introduce people to these ideas. Kind of start at the beginning, including all that complexity.

But people who don’t think they know anything about design or technology, and people who imagine that disability is a very kind of one-dimensional thing, right? Not really thought very hard about it. But so that’s kind of– that was the impetus for the book.

WILL BUTLER: So I remember vividly when you came across my radar first. I think it was 2013. I read this Medium post that said, all technology is assistive technology.

SARAH HENDREN: Yeah.

WILL BUTLER: And I guess now that I’ve been working in this field for so long, it feels kind of obvious. But it blew my mind at the time. And I think it blew a lot of people’s mind. You had this blog called Abler, and you were writing about assistive technology kind of in a way that no one had before. Anything from a glove to a chair is assistive technology. Suddenly, it just really expands your mind and makes you think of it all very differently.

I know that you’ve taken kind of the heart of this into the book. And I’m wondering, what do you think– what kind of book do? You say in this book that design is the product of human decisions. What decisions do you hope people make after they read your book?

SARAH HENDREN: Yeah. Well, and the thing that you’re describing there, that all technology is assistive, a lot of that is fed by what I was taught by reading disability studies, too. And that other kinds of scholars had said that kind of thing in a different kind of way, but deep in the scholarly fields. And I really wanted to make a strong claim in that kind of– first on Medium, and then Wired approached me to reprint it there, which was a dream for me because when I started blogging, that was the audience that I really wanted to reach.

In other words, I am a parents of a 14-year-old now with Down syndrome. And when he was born, I was ushered into a whole community of people who shared my same interests and loves and concerns for the future of people with Down syndrome. But it was so clear to me right away that what I actually needed was a culture that was also ready and willing to build a world in which his kind of variation on normalcy could also thrive.

And if you want to build a culture that also has its kind of sights set widely on who belongs and who counts and who can flourish, well, then you need to find lots and lots of languages and terms and frames for people to enter into that conversation. Do you see what I mean? So it was really important to me to blog about technology precisely for that Wired Magazine reader to say what you think is the story of disability in technology is only high-tech prosthetics and the sort of latest invention for replacement parts.

But I promise you that the world of the way disability and design meet each other is infinite and vast, and it goes back a lot of years. And it includes what happens in our laboratories and in code, but it’s also the tinkering that people do in their living room. And it’s the refashioning at architectural scale. Its systems and streets.

And when you see all of those different scales of technology and design working together, then you start to think, oh. Not only is design really multiple and varied, and boy, does it blow our minds to think what are all the ways of the built world is teaching us something about human bodies, but also, yes. This idea that what is technology at all if not giving us help? And that Medium post that became that piece at Wired, All Technology is Assistive,” was meant to do what words can do best, which is to reframe something that we think we know.

And it was aimed at people who think, like, oh, well, assistive technology, that’s a noble fields where people work on prosthetics for folks who need them. And we sure want to do right by those people. And it has this kind of ennobled cause, again. But it has this kind of specialty and sort of is cordoned off over here on the side.

And I really wanted to say, actually, if you think of assistance as being just inherent in technology, then the questions change utterly. Then you say, oh. What that means is that all bodies in every state have needs, and that all bodies actually are extended with technologies of all kinds. So that means fork and knife, and chopsticks, and eyeglasses, and orthotics shoes, and all kinds of the ways that we are dependent.

Now, that doesn’t mean that we are the same. We should never actually overlook that kind of the distinctions between and among us, the kinds of barriers that we face [? that ?] [? include ?] the world. But nonetheless, to reframe assistance as being deeply human is to say, wow. I am getting help, and I want to build a world, then– I want to build a world in which help is actually part of what it means to be alive.

I don’t want to design the help out of our experience or to pretend that the future shouldn’t have help in it. But help actually adheres to our fundamental nature and the giving and receiving of one to another. So all of that was a way for me to try to say, can a future design for technologies but also keep us connected to one another and keep returning us to each other, and that also make room for lots of kinds of bodies to do lots of kinds of things?

So the book goes through all those scales of technology to try to demonstrate this. So it’s organized by objects. It starts with limb. It goes to a chair. It goes to a room. It goes to a street. It goes out to the systems of time in a chapter called “Clock.” And all of that, it’s like a journalistic kind of sweep through people who are using prosthetic limbs, but people who– the histories of adaptive furniture and universal design, to architecture for deafness and deaf space, to the history of curb cuts. All of this deeply created tradition where disability meets the design of the built world so that every reader can see themselves in that story. That story where assistance is needed and creatively designed or redesigned.

WILL BUTLER: So do you hope designers will make decisions after reading your book through a new frame of reference? Is that sort of what this is? Like a discovery mission?

SARAH HENDREN: Yeah, that’s right. Or a new frame for starting with the why. A lot of times, people talk about that. Like, OK. If you want to do purposeful work, if you want to be clear about what you’re waking up every day to do, be clear about the why.

And sometimes, I think the why in what’s called assistive technology or prosthetics, sometimes that y is like, well, there’s a problem in the world. There are barriers. And I am going to be there to fix them. And my book is trying to say yes, that may be true some of the time. But also, don’t forget that disabled people themselves have been doing that radical adaptation, have been doing their own hacking, their own tinkering. Disabled people have been at the source of the kinds of adaptations that folks who want to go into assistive tech in the first place find themselves inspired by. The legends of those histories are not as well known.

But I think we shift the frame. We shift the frame. That means we re describe the world as it is in different ways, that we see it differently. That we describe it in a way that we want to be. We point to a kind of future. To me, what I hope is that designers see this and think, oh. This is designed not just for other people. This is designed for me and my future, my social and political future. The one that I want to live on.

And will I look now with a wider set of eyes antenna attention in the way that good designers do? Will I keep my purview really elastic and broad and ambitious to be looking for where good ideas may be found? And that was my hope.

WILL BUTLER: Yeah. Well, we’ll get into this, but you talk about universal design as such a lauded thing, but it’s not always the exact answer.

SARAH HENDREN: Yeah.

WILL BUTLER: We’ll get into it. But I want to ask about the term misfit. We’ve got we’ve seen all these different technologies today, all these incredible manufacturers making things for people to use, whether it’s a piece of hardware or AI. Tell me what a misfit is. It’s an important idea in the book, and maybe how it applies with something like prosthetic limbs, and we’ll take it over to talk about site tech.

SARAH HENDREN: Yeah. So misft that misfitting is a term from Rosemary Garland Thompson, who’s senior scholar in disability studies. And the book is full of disabled scholars and activists who are academics, and their work is deep and rich and has been around for a while. But I have tried to translate it for the lay reader to try to indicate that complexity and leave a paper trail for the reader further.

So I start the book with this incredibly generative idea from Rosemary’s. And misfitting– we think we know what that means, right? That’s a very commonplace kind of word. But what she says is that disability is a condition of misfitting, meaning that it’s to be a square peg in a round hole world. And again, that may seem like, well, that’s common sense. Of course, there’s a kind of barrier there about the way your body comes to the world.

But she says what it means to misfit, if you’re a square peg in a round hole, it’s actually not clear which– where the onus of that tension and that mismatch lies. In other words, if you are somebody who uses a wheelchair, it’s not clear whether you are asking for a world that has exoskeletons that would amplify your body and therefore get rid of the chair or whether you’re asking for a world where there are more ramps in it and more accessible entrances.

So in other words, the square peg and the round hole, the misfit is actually running both ways. I’m pointing in two directions, from the peg to the hole and back. And so that changes everything for people who would like to work in designer technology because it’s not clear whether it’s the body that’s asking for it’s wearable kinds of adaptations and tech or whether it’s that architectural and systems and infrastructural scale where our best energy would be put.

It also implies what’s called a social model of disability. So probably some people who are attending today will be familiar with that. But a medical model of disability just locates impairment or difference just on the body itself. But a social model– and I’m just broadly generalizing here– a social model includes actually the interaction between the body and the world. What happens between me and this desk, between me and this chair.

And what that means is maybe I’m looking for the kinds of things that I would do to bring my body to the world. But maybe sometimes, I’m asking the world to come a little bit more toward me. So when you– the wheelchair, sort of better wheelchair versus ramps is kind of an obvious example.

But also, Rosemary herself would say that her iPhone is an incredibly adaptive object because it comes out of the box equipped for speech to text, for example, and the kind of deep understanding of natural language processing that had to go into making that, the fidelity of that quite strong so that she herself, Rosemary, who has really atypical hands and fingers, could use that machine easily. In other words, that machinery walks a little bit more toward her. And she’s used to a life in which she brings her body to her laptop in her adaptive ways. But in that mobile device, that’s the world walking a little bit more toward her. So it’s an important dynamic to consider when setting out to build something.

WILL BUTLER: Yeah, what is the difference between– you know, you talk about these complicated, high-tech prosthetics that are made for people. And then they turn out to be too heavy, not practical, and people end up using, like, zip ties to open their drawers, right? What does that say about the technology we design for people, especially in the site space? What’s the difference between a technology that tries to restore a previous faculty or a technology that just creates a new one altogether? Are the two mutually exclusive? Is this something designers should be considering when they’re looking at this stuff?

SARAH HENDREN: Yeah. And just to orient readers, we meet, like, five characters in this limb chapter, one of whom uses a super high-tech myoelectric arm, a couple of whom actually use much more homemade. Both of them– all these folks are either acquired amputees or born with one limb, one arm in one case.

And the technology that they use is quite varied. So in one case, that high-tech arm. In a couple of other cases, folks using much more rudimentary kind of dollar store adaptations and tinkering to get their lives done. And none of that comparison is to say that one is wrong and one is right. One is better and one is sort or worse. That high tech is always transformative and low tech is not, or vise versa.

That all of– whenever we keep our antenna really wide, as I was saying before, then we just see that assistance and adaptation and the replacement for the replacement things that matter, will. So it’s like, what is it that people are trying to get done? What is a desirable life for them? And does that involve, in the sight case, restoring sight where it had been lost? Or does it in their case have to do with adapting to the world in that kind of square peg, round hole way so that people can get more of the things done that they would like to do?

In other words, narrowly focusing on a pre-determined idea of what fixing and cures and solutions would look like might actually preclude us from arriving at solutions that are ready to hand and that may be more incremental or transformative in some people’s lives that we haven’t thought of before.

So in the case of sight, none of this again is to romanticize what it’s like to lose a faculty that you once had, for example, or to say that it’s wrong somehow to want to restore sight. I mean, I’m for all that science so far as as people want it. Technology and the same.

But my book and my work on just learning again for the last decade has taught me to ask to look really closely, and good designers always do, at what it is that people are saying they’re trying to get done in ways that are meaningful to them that do that work of bringing them back into connection with one another, that smooths the path where there are barriers or hurdles where certain kinds of capacities come to the fore. Now, as you said, is repairing a loss mutually exclusive from creating new faculties?

No, I don’t think they’re mutually exclusive at all. And in fact, I often say to people, to young students, for example, who are starting out in engineering, have you ever observed a blind person listening to their email, I’ll say? And my students I think are always quite amazed to hear, for example, the deeply adaptive speed at which the folks who I know, my blind friends, the way they listen to their email.

And I try to challenge students to think in terms of– always in terms of both assets and challenges. Both assets and challenges. So the body is always adapting, seeking its new possibilities, collapsing and recombining its faculties. So let’s think about where we would design for those kinds of spaces. And also, we can be in pursuit of fixes and cures at the same time when they’re wanted.

WILL BUTLER: Yeah, I think of, like, if you– for someone, a big CCTV with a nice big screen and a moving tray might be the best way to read a label that they’re trying to read. And for others, it could be as simple as cupping their hand over their eye to reduce glare. It’s understanding the mallet malleability of solutions.

Yeah, that’s right. And what you just described, Will, I think a lot of times, designers in a laboratory or engineers in a laboratory setting would miss the ethnographic kind of interview that you would need to do to see what you’re talking about. The cupping your hand over your eye.

If you’re doing– it’s not like you have to do it for months and years on end, but if you’re doing just a good human design process, human-centered design process, then you are not just asking people surveys about the tech that they want to see in the world. You are observing– that’s what I mean by assets and challenges. You’re observing them doing their life, which is always going to be adaptive.

SARAH HENDREN: So then you’re asking, huh. That’s interesting that this behavior, this cupping over the eyes, is the way that that’s the adaptive kind of form for near-term sight. Or like my grandmother-in-law, she’s 100 now, has glaucoma and macular degeneration both. And all the years that she spent tying strings around her different jars in her kitchen to stay mobile in her kitchen for a long time. In all the ways that she was always adapting. So what are people doing already? And what are, then, they asking for to both build on those assets and also address challenges?

WILL BUTLER: You mentioned the word culture earlier. And you talk about in the book how oftentimes, things are designed less about function and more about culture. And you use a chair as an example. And I’m wondering what are some things about site culture that maybe limit or have informed the designs that we see today around assistive site technology.

Well, I would actually like to hear your answer to that question, Will. I will just say I think you and I share the kind of– an interest in what happens in design cultures that take on site tech, and that too often gets kind of shunted toward the cane and the idea of a cane that will outpace or some other tech that will supersede the cane under the precondition idea that the cane is somehow an albatross, or the cane is the problem, or the cane is too low tech, or whatever.

And it was Georgina Kleege who really taught me about how what an elegant machine the cane is precisely because of all that adaptation of the body. Because she is using it as one in a multi-sensory organ of her body and her learned way of thinking about the olfactory sense that she uses to go through her neighborhood. And she remembers, this is where the Thai restaurant is, which means the bakery I’m looking for it is a few blocks down.

And the way that the cane is doing a kind of public work for her, too, in terms of alerting other people to her presence. And so that seems to be like one of those tropes where people go like, oh, surely it’s going to be better if we can get rid of this cane or we can trick out this cane with all kinds of smarts. And it seems like that’s, in a lot of cases, ill-advised. But what is your observation?

Well, I will never forget when I read the article you wrote in The Atlantic where you called– you said the cane was elegant. And as someone who had been using a cane for only a year at that point, I was, like, shocked and so relieved to be reading something written by a sighted person, a non-cane user, who genuinely thought the cane was elegant.

And I was like– it was like a freeing, right? Because there is such a drive in the assistive tech world towards replacing our canes, and it’s not to say that one day, something better than the cane won’t come along. But it’s almost as if the idea that if we replace our canes, they’ve cured our vision problem, and we can now brush our hands on and move on to the next disadvantaged group.

So I definitely have some issue with that. Like, let’s not fix a tool that’s not broken. And so that’s a cultural thing for sure. Also, I think there’s a real question as to whether or not all your sight solutions should be head mounted. I think, like– I personally think that it makes sense if you’re a native– if you were born with sight, it’s intuitive to use your face to direct a prosthetic to see.

But I know many others who think, why does it have to be on my head? Why can’t it be in my hand, or on my chest, or around my– on top of my head? Or I don’t know. You know what I mean? These are just cultural paradigms.

One good analogy I think is Deaf Space at Gallaudet University, and that’s in the Room chapter of the book, and all over the internet, people can read about it. But that’s where one sense of hearing is not only not looking to be fixed and replaced but that an architectural, environmental kind of system could be designed around that condition so that the widths of doorways, the color schemes used as a background for visual language, the use of light, the use of resonant materials, all of those things are not at the sight of the ears. They’re not even at the sight of the body itself, but they’re at the sight of the environment. And so it’s an invitation, I think, to do the most creative work we can do and to think beyond our kind of one-to-one equivalents, just like you’re saying.

Maxine Greene has this idea called social imagination.

SARAH HENDREN: Yeah.

WILL BUTLER: Tell me why– you know, what that means in the context of this discussion we’ve been having. What can we learn from this idea?

SARAH HENDREN: Yeah. I think– so Greene was writing as an aesthetic philosopher about the magic that happens between more than one person in the presence of an artifact like a painting or a dance or a sculpture or something. And she says that when two people are talking about that artifact and kind of thinking it over and making sense, they’re asking– they are, she says, thinking as if things could be otherwise. Otherwise than they are. That’s the kind of deep imagination that’s happening that is also deeply social.

And I include it in the book because– she wasn’t talking about engineering, but I do think that’s what’s happening at its best in the laboratory or the design studio in the presence of an artifact. So that if you are asking, if designers and technologists today are in the presence of other people and saying, what if it could be like this? Where should it be mounted on the body? Is it an app? Is it actually an environment? What else could it be?

That when you’re talking together, and when you have that artifact, that kind of triangle– I’m making this gesture with my hand. That kind of triad of a relationship. That is a beautiful thing. And I can hardly think of anything more ambitious than saying, what if? What if things could be otherwise? And I hope people will feel the courage and the ambition to ask those questions.

WILL BUTLER: Well, thank you, Sarah. Thank you for being such a determined scholar on these topics. Thank you for meeting us where we are as a community and for encouraging us to use a little imagination.

SARAH HENDREN: Thank you pleasure to be here.

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