Mara Mills talks to Sara Hendren about design and disability

Aug 13, 2023

SARA HENDREN IS A HUMANIST IN TECH—an artist, design researcher, writer, and professor at Olin College of Engineering. Her work has been widely exhibited and is held in the permanent collections of the Museum of Modern Art and the Cooper Hewitt, Smithsonian Design Museum in New York; her writing and design have been featured on NPR, in Fast Company, and in the New York Times. Below, she discusses her new book What Can A Body Do? How We Meet the Built World (Penguin Random House, 2020) and the unexpected places disability can be found at the heart of everyday design: household objects, architecture, urban planning, and more. On November 12, she will join designer and activist Regine Gilbert for the digital conversation "Disability Justice and the Politics of Inclusive Design" hosted by New York University's Center for Disability Studies.

—Mara Mills

MM: You’ve written a book about design and disability, but neither word appears in the title. Who is the "we" your book is written for, and what makes up the built world?

SARA HENDREN: The "we" is truly everyone. The book opens the widest lens on our adaptive, mysterious bodies as they meet the world in "misfits" of all kinds, the ways our soft flesh comes up against machinery and concrete. Sometimes that's easy and sometimes that's hard: wielding our kitchen tools when we’ve sprained a wrist, or navigating the subway with a young child learning to walk, or the gradual change in our capacities as we age. And then there are the acute "misfits"—that's scholar Rosemarie Garland-Thomson's term for states of disability: the physical, developmental, psychological misfits that we and our loved ones experience, making us unable to get down the street or up the stairs, or unable to make our way through schools and workplaces in a way that adheres to normative ideas of timeliness. The built world I explore starts with the appendages of the body itself and expands outward, chapter by chapter: to products, furniture, rooms, and architecture, to the urban planning of streets, and finally to the clock, which is not a literal object but a conceptual one—the design of time in our lives. Those misfit states make up a "we" that isn't uniform but are connected nonetheless by a powerful idea: that a body in the world comes with needfulness, political and personal, and that we might let all the designed tools we use for assistance be visible and unifying. It took years to get the right title, because my editor and I both knew we were looking for a way to speak especially to readers who don't think their lives have anything to do with disability, and who might not be immediately drawn to design as a topic. But both disability and design have so much to say to all our lives—in ways that are incredibly creative and generative, and in ways that carry the highest human and political stakes.

MM: Like thousands of others, I first came across your work through the blog Abler, where you collected and commented on prosthetics and architecture, high- and low-tech alike, from 2009 to 2017. Your posts introduced me to topics ranging from sonic video games for blind players to the sophisticated technologies of white canes, all accompanied by your startling meditations on technical humanity and mediated relations. I also encountered your own design projects on Abler—like a series of portable ramps and other inclined planes that bring forth resonances between skateboards and wheelchairs and public monuments. And the red "active wheelchair" sticker you designed with the philosopher and graffiti artist Brian Glenney to tag and transform the static blue-and-white signs that mark accessible doorways and parking spots. Or your "alternative hospital linens" embroidered in tiny lettering with medical management jargon; I’m reminded of these hospital linens all the time now when I see DIY face masks with a critical aesthetic.

SH: It's been a big ten years! Back then, I was looking everywhere, mostly in vain, for examples of disability representation that had both the workhorse pragmatism of good design and the complexity of culture—expressive language and materials, a sense of dimensional personhood, strong poetry. My son, the eldest of three children, has Down syndrome and was a baby at the time. Our life was filling up with the material culture of his diagnostics—the tiniest ankle braces and eyeglasses and therapeutic toys and so on. But none of those objects could encompass the big story that his life was also joining: a long history of disability rights and self-advocacy and legal measures and still-unrealized hopes. Our life, our family, joined that story too. For the long haul.

I didn't really have words for it at the time, but I started collecting examples of prosthetics of all kinds, to try to make sense of the built world as an index of ideas. How does all our physical stuff do very mundane and reliable functional work in our everyday, but how does it also say something about who we are to each other?

I was blogging at a time before social media platforms swooped in to collect and aggregate all forms of sharing ideas online, so Abler had a particular curatorial kind of engine. I was looking at BLDG BLOG, and Edible Geography, and Pruned, blogs that were viewing the material world as a way to examine bigger ideas in culture and politics. I was also trying to write my way into a design and research practice—though I didn't fully realize it then. Collecting and commenting on other people's work, snippets of reading, thinking aloud in public were all a way of revving up to have a laboratory that could encompass both art and engineering, an undivided house of practice to see disability and technology differently.

MM: You describe disability as a "what if" rather than a problem, a "what if" for design, for sociality, for critical theory.

SH: Yes. This is partly owing to ideas like sociologist Tanya Titchkosky's "politics of wonder" for disability; it's also connected to philosopher Maxine Greene's idea of social imagination, which I explore in the book's epilogue. Social imagination, Greene said, is "thinking as if things could be otherwise": It's what's happening in a relation between at least two people and some artifact in front of them—the social meaning that's made in a dialogical exchange with culture. In the book, the what if is the moment that arrives when disabled bodies come up against the built world in a clash—and the productive uncertainty of letting the question hang in the air for a bit, before rushing to a solution that has been matched to a straightforward "problem."

And don't get me wrong—there are real frustrations and challenges when bodies meet the world, and folks are asking for some very pragmatic redress! But the what if offers us several ways to frame and prototype new built worlds. In my chapter on prosthetic limbs, I tell the story of Cindy, who became a quadruple amputee late in life and was the lucky recipient of the best "solution" kind of engineering that money can buy: a myoelectric arm and hand. But that prosthesis sits in a closet in her house, gathering dust, because it's far too overwrought for her everyday wishes. Instead, she has a whole suite of objects that make her life meaningful: cable ties that allow her to grip and pull open dresser drawers, and miniature tongs that allow her to grasp a sandwich and bring it to her mouth, and a bespoke silicone cap for her hand, lodged with a pen through it at a precise angle, that makes her able to write again, in her own handwriting. That last example is important: We live in an age of speech-to-text software that works great, and should, at first glance, obviate the need for pens and paper. But for Cindy, the writing was crucial to her sense of wellbeing and identity. That silicone cap, made with her prosthetists out of scrap materials, cost pennies to make.

When any of us sets out to prototype a new thing—a gadget, a piece of furniture, a new building, anything that will arrive in people's lives—we owe to each other a slightly slower process and a new quality of attention, a what if that's based on people's wishes as well as their needs.

MM: Your design projects strike a balance between simplicity and gravity, a style I admire in your writing, too. Why did you decide, now, to write a book? And a book with so few images!

SH: The book idea came from the large number of incredible backstories and profiles of disabled people I had met over years of collaborative work and research—stories that I wanted readers to know about, readers outside of my classroom and my academic field. It was originally conceived as an image-heavy work, with commentary alongside. But I realized how quickly some of the technology and design would fade in its novelty or relevance, while the narratives—how people, all people, adapt to their surroundings with tools and replacement parts of all kinds, confronting the independence so many of us prize—would endure. The real thrust of the book is universal in nature, and I wanted the incredible richness of disability as an approach to the world to be available to the general reader, to use as a resource for the times when misfit status comes for any of us and our loved ones.

It's also an introductory book for people who don't think they know much about design. I’m trying to show how close at hand design really is, how we make friends or enemies of the stuff in our lives all the time. Folks in design know that the material world is always a portal to understanding the tacit (or explicit) values held in a culture, and I wanted to write a primer for understanding just how that works: how to look at the objects in your life and see that they are the result of human decisions. The book has few images to keep the price affordable, but you can also find many of the subjects in the book in images, video, and descriptions online. And I have plans for some companion media, too!

MM: Can I give you a pop quiz? Do you have any thoughts on design for quarantine?

SH: Like a lot of people, I’m watching this closely. There's a short-term story and an unknown longer-term future, of course. Three roads in my home city are being prototyped as "Shared Streets," with slow speed limits and some strategically placed signage to convey information and act as traffic-calming barriers. This is all to make room for social distancing and outdoor activity, but it's also been on the wish list of sustainable city advocates for a long time. It seems like we’ve needed telehealth platforms to be much more carefully and creatively built, and we may be seeing that come to fruition now. And I have to say that, even as someone who frequently takes a biopolitical view of prosthetics, I have been stunned at how the mask has become entrenched as an index of the culture wars. I am flummoxed and I’m seeking, truly, to understand how that all happened. Again, we won't know for a while what the causes are, and we’ll have to wait and see what prototypes stick around. But everyone should take note that the shapes of the world are shifting. The work of bringing our keen attention to what's working, and what isn't working, and who decides—these are collective matters.

MM: I read your book in Manhattan during the first week of June, in the evenings after marching or congregating, hearing the sounds of other protests continuing on across the city. The artist Krzysztof Wodiczko was your mentor, and his theory of interrogative design is a guiding principle for your work—asking questions or stirring up trouble rather than solving problems. Wodiczko runs his interrogative design course, first started at MIT and now at Harvard GSD, as a workshop on "technologies of protest and disagreement," and I would love to know more about your amalgamation of his ideas with disability activism.

SH: Wodiczko's body of work contains metaphorical "prosthetics" of various kinds, and when I was first looking around for examples of artificial parts that do something other than pure function—that operate to bridge other gaps between the body and the world, that externalize some hidden human reality—I kept his words and projects close by, even taped over my desk. He trained as an industrial designer first, and he's an immigrant twice over; his work has often been preoccupied with "misfitting" in various ways. But the thing I loved most was the union of use and poetry in his work: the real-cranking-machinery, the technical complexity, combined with such expressive pathos, all toward the idea of the body's extensions that do more than aid our executive functioning. You know? Prosthetics for all the hidden and tender parts of our lives, too.

In a similar way, I wanted to see the incredible ideas in disability studies, which got its start in the expressive domains of the humanities, also come alive in built stuff. And not just in objects for contemplation, as you see in a gallery setting. Stuff that works! With all the stubborn materiality that comes with it. That's at the heart of my work on ramps designed for wheelchair use and skateboarders; I wanted a real engineered design that hews to constraints and also does the classic work of estrangement in art. A thing that rearranges the synapses in your brain, helps you think differently. The suggestion of an otherwise at hand, in Greene's sense.

MM: What Can a Body Do? has a lot to say about remaking cities in general, from tactical urbanism (DIY interventions like guerrilla gardening in empty lots) to unconscious "desire lines," like footpaths that cross the green spaces in parks despite paved walkways.

I live at the intersection of Houston and Greene Streets in New York, and I’ve been researching the "packing box city" that sprang up on my corner during the Great Depression, when so many people became homeless because even the minimal safety nets we have in place today (social security, disability, and unemployment) did not yet exist. Your book made me completely rethink cardboard as a tool of tactical urbanism at the moment when cardboard protest signs were filling the streets, when cardboard boxes fill the lobbies of expensive buildings where some people are able to work and shop "remotely," and elsewhere packing box cities again coalesce. You call cardboard "a draft and a finished project" in your section on the Adaptive Design Association, located on 36th Street, where inexpensive design-for-one furniture and tools are cut from this material to support the distinctive activities of disabled children.

SH: I love this connection, and I’m so glad you’ll help us all see the "packing box city"—which is new to me—in a new historical continuity. Cardboard really is stunning to me in this way—it is so practical, and it also suggests a perpetual world-under-construction. The Adaptive Design Association builds robust furniture that holds onto that beautiful provisionality, making things that are modular and adjustable and affordable. But the ADA design group as a whole, in their craft practices and in their ways of interacting with clients and each other, also believe in the provisionality of each human person: in the becoming that is the nature of each adaptive, plastic individual in their world. Groups like the ADA often get represented in the media through a soft-focus, heart-warming gaze—possibly because of the low-tech modesty of cardboard and possibly because it's adjacent to special education, which is a world run largely by women. Probably both. I wanted the reader to see instead how radical the ideas are in that deceptively modest little workshop.

MM: You frequently cede your voice and authority in the book to disabled designers and engineers, or to "non-experts" who, it turns out, have abundant expertise—and artistry—when it comes to their personal technologies. Who is a designer?

SH: Readers of the book will find some recognizable tinkerers and makers there, much like the family members and loved ones who are in all our lives. I wanted to indicate a really big canopy for design and engineering, one that includes the ordinary ways that people are always modifying their worlds. More specifically, and citing other scholars such as yourself, Bess Williamson, Aimi Hamraie, David Serlin, and Elizabeth Guffey, I’ve tried to indicate some of the lesser-known or unacknowledged histories where disability and disabled makers are at the heart of everyday design—restoring that expertise to the larger history of technology.

But I also take up Ezio Manzini's idea of "diffuse design." It's an idea that I think is especially helpful for understanding our own time. For Manzini, diffuse design is the phenomenon of networked practices—material processes and products that are linked together by digital idea-sharing and amplification. Think of CSAs run by small farms who might share equipment, labor, and online membership marketing: These are designed goods and services that aren't just artisanal one-offs versus those that are mass manufactured. They’re in between: small scale production, networked power. Manzini also calls it "cosmopolitan localism." It's important that we recognize all the many proliferations of this model as a model, because otherwise people get caught up in the same old metrics for "impact" that rely solely on a nineteenth-century idea of economies of scale: a product or idea only matters if it's replicated, widget-style, for millions of people at a time.

MM: In your discussion of "cosmetic prostheses" in Audre Lorde's Cancer Journals—the padded bras and breast implants that she refused in the name of public grief and testimony—you ask the gutting question, Will we know our own real wishes when faced with a similar decision? How do you answer this question? How do we know our options, much less our wishes, when we are headlong into change?

SH: One of the reasons I filled the book with journalistic scenes and interviews is to offer the incredible resource of stories to readers, no matter their embodiment, for thinking through their own lives. We carry the stories of others in our minds after we read them. They sit somewhere in our heads, or perched on our shoulders, ready to help in a prismatic way. Which path was chosen, and which foregone?

I turn to theory to make sense of life, too; I think stories are a vivid complement to abstract theoretical ideas, because in stories we see the point of view of a character moving through time, and we see the contingency at hand. As in Lorde's case: We can each imagine the plurality of choices any of us might make (or have made) for a post-op body. And the plurality is what matters.

Psychologists like my colleague Jonathan Adler tell us that "narrative identity" is necessary for survival. We need stories of our lives that cohere—no matter their level of happiness or satisfaction—in order to move through our days. So other people's stories help us to shift and change the terms and the meanings of our own narratives as we move through life. I look for assistance in that work of identity in fiction and nonfiction alike.

MM: You have a remarkably interdisciplinary training that transects art, engineering, and the humanities: an undergraduate fine arts degree; a graduate degree in History from UCLA; and a Master's in Design Studies from Harvard, followed by a fellowship year at metaLab, a cutting-edge digital arts and humanities center. And now you are a professor at an engineering school! These elements are all threaded through your design writing, but I find one of the most unorthodox aspects of your book to be its deep engagement with history—not just artifacts as indices and congealments of history, but the way particular object-histories have taught you to reevaluate tool use and to build new things.

SH: It's an understatement to say that engineering as a whole has the perennial problem of seeing itself as ahistorical. Its relentless "future-itis" is part of what makes tech so weaponizable. So I always want to take a longer view of the continuities and changes of an artifact or idea at hand.

I also dropped out of that PhD program in history. At the time I thought I needed to course-correct my path and get back to making things. I ended up in design and then engineering through a long meandering decade. But those years I spent training as a historian have marked me forever, and that disposition came rushing back in this book. Real historians bring the past to life by indicating the deep contingency of what happened. Any generation always has the vantage of hindsight that tends to make tidy stories of the past: first this, then that, and afterward this . . . But any good scholar of history always has in mind just how fragile those developments really were. And if you take that contingency seriously, you see your own world developing with that same plurality, that same unscripted and indeterminate future.

MM: We first met in person in 2012, at a U.C. Irvine summer school and artist residency on the theme of disability, design, and curation. No academic event I’ve participated in since has lived up to that one, I think because it reconceived what school could be: equal parts Freireian culture circle, dance class, and live audio description experiment. So many of the participants—including Amanda Cachia, whom you feature in the first chapter of What Can a Body Do—went on to become leaders in the now-burgeoning field of disability and design, which hardly existed at the time. What do you make of the phenomenal decentering of the medical imaginary of disability by critical arts and designers over the past decade?

SH: I think the last couple of decades have brought a broader popular interest in design in general, not least by tech and media companies in Silicon Valley. Those folks tend to be most interested in the problem-solving methods of design practice in the pursuit of innovative products—what's often called "design thinking." At its best, design thinking is a collection of skilled practices used for reframing challenges to see complexities in all their facets and features. At its worst, it can be a stripped-down, cookie-cutter way of "solutioneering" that obscures the political and historical tensions in our lives—things that you can't address with a clever fix. But using design as an approach is something that's grown immensely in recent years, far outside of specialist domains like architecture or communications. My kids’ public-school system has a roving "design lab" now for thinking through system-wide curricular challenges; I gather that's not uncommon these days!

Disability representation, too, is now enjoying a much bigger platform. Social media has certainly gathered and aggregated voices outside the old channels—and I think it's easy to forget just how much consolidation has happened through those algorithmic attention machines, and how new they really are. There have been big gains and big losses as a result of that consolidation, but one very positive development is how social media has made it possible for lots of marginalized folks to speak more loudly about their own lives and wishes.

MM: Your book spans architecture, prosthesis, furniture—and ends with a breathtaking meditation on disability and the design of time. What isn't design?

SH: Lots of designers will say that design is pretty big, at least as an approach—some variation on a definition along the lines of "the arrangement of elements toward a desired end." I think that's useful, not to overclaim for the design domain itself, but just to indicate the key feature: human intention and will that's brought to bear on some aspect of our built lives. That includes products and buildings, of course, but also street and park structures, and then things like how you interact with an ATM or with the check-in process at the airport. All that stuff is designed. And more important than naming the outer boundaries of the field is taking seriously that the stuff in your world is not inevitable. Someone crafted it to be that way, with a set of assumptions and decision-making skills that may or may not have your best interests at heart. Which means that some of it might be undesigned as such, or redesigned anew.

Having said that, it's important to see that design hits its limits in the realm of true democratic politics, where contestation and debate are its necessary and ongoing practice. Democracy is not "designed" by some and consumed by others. It's a process by nature; that's its dignity. And it's important to remember that anything like "solutionism" in the technocratic sense—however well-meant or liberatory-seeming—will never substitute for a set of true civic practices.