Q&A with Sara Hendren

Below is an interview with Sara Hendren, artist, design researcher, writer, and professor, who has a new book What Can A Body Do? How We Meet the Built World (Riverhead Books) coming out on August 18, 2020. Enjoy!

Congratulations on your new book! How are you preparing for your book launch on August 18, 2020 in the midst of the pandemic? How has COVID19 changed your book promotion plans?

Thanks, Alice! And big, heartfelt congrats your way, too—this year has been such a feast for disability publications. I am thrilled to see it; I was looking in vain for these kinds of readily visible, popular resources a dozen years ago. And yes, pandemic publishing is weird, for sure. I’m doing digital events, as are most authors, and I’m thinking about how to use a multi-camera situation to more interactive effect when I connect with folks. I actually hope I’ll be able to join some smaller events like book clubs, given the time for travel that’s now been erased. (As the co-parent of three kids with a full time job, I find travel comes with a pretty steep time/disruption cost.) I’m also planning to pair up for digital events with design folks who I’ve wanted to talk to about intersectional questions, ones that would probably be too busy normally. So there’s that silver lining.

I’ve followed your work for a long time first through your blog abler wayyyyy back when. How did you become interested in design, art, technology, and accessibility?

It’s significant that you remember Abler—that was a blog I ran on prosthetics, art, and assistive tech broadly, beginning in 2009, before social media had grown to consolidate and govern all online sharing. The digital space was the way I found like minded thinkers like yourself, in a time when I couldn’t leave the house much. I was the new mother, at that time, of the eldest of my three children, Graham, who has Down syndrome. I was also a grad school dropout, trying to figure out the mix of scholarship and artmaking that I wanted to do. Graham’s entry into my life brought both the politicization of becoming a parent, any parent—the new dimensions of social interdependence that arise from managing childcare and work, the stubbornly byzantine structures and profit motives in healthcare—and also the politics of disability, with its sharp rebuke to the worship of normalcy and utilitarian metrics for human worth. Ultimately, Abler became a seeding ground for me to observe and write my way into a way of working, now as a professor at an engineering school.

For a your book, why did you want to write What Can A Body Do? How We Meet the Built World and what are some central ideas you want to share with the readers?

In a decade of doing research and collaborations in this field, I found myself in conversation with and reading about all kinds of ideas in the history of design that collided in fascinating ways with the rich scholarship and activism in disability studies. I went to my provost in 2015 and said: I want to write a book, but I don’t want it to be an academic book. I want it to be for the general nonfiction reader, a gateway book that introduces some of the complexities in both design and disability as intellectual and creative traditions that are at work in living color everywhere in the built environment. Its chapters are arranged to start with the body—the chapter called Limb—and to expand outward from there, to furniture, architecture, urban planning, and finally to the chapter called Clock, which introduces folks to ideas about crip time and human worth in our clock-driven, industry-led world. The book is intended as a bridge-building text, a work of translation—really an introductory primer that can be used to dig much deeper, via the notes and citations, into all the books that have nourished me so much. I was partly imagining readers who are nondisabled and thinking these subjects don’t have anything to do with their lives—like, here’s an invitation, this involves you too! And I was partly imagining disabled readers who find themselves tired of having to explain over and over again why they don’t need to be heroically rescued by technology, but might be looking for ideas in the fields of design and tech that resonate with their own experience. “Misfit” conditions, as Rosemarie Garland-Thomson says, create a whole variety of linkages and extensions into the built world. And that that misfit wisdom, as articulated by disabled people, is an intellectual tradition on offer to the wider culture. Design is one of the most vivid, resonant ways those ideas show up in our everyday lives.

You write, “Every day, every body is at odds with the built environment…How we meet the built environment depends on both bodies and worlds.” What are some examples of your body at odds with the built environments you navigate daily? 

That passage is in the opening paragraph, intended to get especially nondisabled readers to consider the ways the built environment both works and doesn’t work for them: kitchen work for arthritic hands, or navigating the subway when you’re temporarily on crutches, or waiting in endless lines when heavily pregnant. Bodies are soft flesh in a world of machinery, and that can be a beautiful match or an experience that’s full of hurdles. Starting the book that way isn’t to say “all bodies are the same” or “we’re all disabled.” Rather, it’s an attempt to get any reader to think with more attention about their own bodies and those of others, to bring a new and productive strangeness to how we see the design of the built world, features that any of us might take for granted as fixed and permanent, when in fact much of it is open to reconsideration. And the rest of the book then shows just how mutable the built world must be for disabled people, which is where the creative urgency of adaptation is born.

How can designers, engineers, and architects shift from thinking accessibility as solving a ‘problem’ rather than an opportunity to co-create something beautiful with disabled people?

This is a big theme of my book—trying to get to some of the deeper stories about access that really start with and seek out better questions instead of framing disabled bodies merely as problems. That’s in the title of the book itself—what can a body do?, from an essay by the philosopher Gilles Deleuze—but it’s everywhere in the book, too. Which kinds of bodies have which kinds of wishes, and habits, and families, and jobs, and yes, needs? And where is the role of design and technology in the ecology of experience, if any? I think starting design processes this way defies even the well-intended language of “inclusion.” Sometimes I think inclusion efforts presume a kind of central majority group of people and their willingness to graciously extend the canopy of their goods and services to other people. But the questions that disabled people bring to the world actually shake the very foundations of the status quo: What is an “independent” life? What’s behind the stigma—and alternatively, where might we find the dignity—in the universal experience of assistance, the forms of help in all of our private and public spheres? And most importantly: what is the ground of human worth? If you want to say that it’s not economic, utilitarian productivity, well then—what is it? And how do you know? If we take those questions seriously, then we’re taking up different solutions altogether.

Can you tell me more about your research project at Olin College, “Sketch Model: Cultural and Technological Pathways for a Complex Future” and what you love about teaching and working with students?

Sure! That’s one of my other big passions, and it’s related to the ways my work mixes engineering, art/design, and disability studies. Sketch Model is, in its initial 3-year form, an exploratory program to bring more experiences in the arts and humanities to Olin College, which was founded twenty years ago as a “lab school” for reinventing engineering education. We’ve created paid opportunities for students, faculty and staff, and practicing artists in the form of residencies, summer internships, seed research money, and more. For me this is the big-picture work of what I’m trying to do in my post as a humanist in tech: bring the expressive languages of the arts and the civic concerns of the humanities to my (wonderful!) STEM-driven institution and to the larger (not so wonderful!) STEM-obsessed educational landscape.

Disabled people are constantly cripping objects to fit their needs. What are some notable examples of innovation steeped in disabled wisdom you documented in your book? 

So many! My book chronicles the seeds of good ideas in laboratories but also in living rooms: sometimes an idea that gets reproduced en masse, and sometimes a bespoke design for one. There’s universal design, but there’s so much more: There’s the story of Chris, who was born with one arm, doesn’t use a universal prosthesis, but builds himself a soft-edged tool for changing his newborn baby’s diaper. Chris’s story is in the Limb chapter, right up alongside a man named Mike, who uses the latest myoelectric, heavily-engineered prosthetic arm. And that story is right alongside the incredible Audre Lorde, who tangles at the doctor’s office over her refusal of the standard breast replacement prosthetic she’s offered after a mastectomy. We also take a look at the incredible Jaipur Foot, a low-cost prosthetic leg and foot that’s been produced and distributed for free all over India and elsewhere, and we meet Cindy, a quadruple amputee who’s designed and co-designed all kinds of creative adaptations that do the real work for her—leaving her high-tech prosthesis in the dust. Those stories are not a hierarchy of better or best—they’re just a sampling of the unbelievably varied biopolitical design work being done by disabled people and their partners. There’s no single story; it’s a whole tapestry! The book expands from limbs to encompass products, architecture, and streets/urban planning, and more.

One of my pet peeves is that collaboration between designers and disabled people always presume these are two mutually exclusive groups–one provides lived experience while the other uses their technical expertise to create an actual product. In some instances, the disabled person doesn’t receive credit or any benefits from the development of the product. What needs to change to 1) get more disabled people into design and 2) reimagine partnerships that are fair and transparent? 

This is related, I think, to the overreliance on “universal design” as the only story happening when disability meets design: the presumption that only a thing that “scales”—a product that can be mass manufactured in the millions—is worth paying attention to, and to be “universal” it must somehow hide its origins as adaptive tech, and its origins in disability experience. Economies of scale are useful, of course, for keeping things like ergonomic kitchen tools in an affordable price range and easily distributed. But I think that loss of credit happens largely because of the “generalizing” effect that arises when an item goes to the mass market. I think both of your goals are good ones—see, for example, Kat Steele’s work on the Access Engineering initiative and the Disabled List, and also the IHCD’s User/Expert Lab. And I also think we all need to recover a much bigger and more creative definition of technology itself: high-tech and low-tech, design-for-one and digital fabrication, smart devices and ordinary furniture. I discuss in the book some ways to rethink who designers are, and also how to measure “impact” in technology, with some alternative categories to mass-market scale alone.

What is one popular everyday object that is long overdue for a re-imagining?

Strep tests for kids! Sleep apnea tests for kids! Portable oxygen for kids! So much pediatric biomedical equipment is unbelievably uncomfortable and therefore anxiety-producing for young people especially, and there could be much more user-centered design attention brought to the experience of medical testing in general. (And then, of course, there’s the dreaded up-the-nose COVID test experience, but I know medical folks are working as hard as they can on every diagnostic and treatment front. Love you people!)

I know you love a good inclined plane (aka a ramp). What’s beautiful and inspiring about them? 

They’re the perfect blend of creative and urgent technology. An inclined plane is a simple machine in classical mechanics, alongside the lever, wheel-and-axle, screw, pulley, and other objects that are the simplest possible ways to multiply force. In plain terms, a ramp, just by its shape, alters the required effort you have to put in to raise or lower something. It’s a much easier task than a brute-force step up or down. So it’s kind of magical in that way. The ramp has also been crucial to the building of the world, as in the construction of the great pyramids. And much more dramatically still, it’s been crucial for making wheeled passage through the built environment possible! Wheelchair access is political physics: an invisible equation of mechanics that makes entry into public space possible, and therefore entry into the public sphere. I have a longstanding project on ramps that started as a design for wheelchair use and skateboarding in the built environment, and I had the great joy of working with Alice Sheppard and Kinetic Light on a couple of ramp designs for wheelchair dancing on stage.

What are some changes to the built environment you anticipate post-pandemic that may increase or worsen access in public spaces?

Well—I’m encouraged by 1) more robust telehealth practices that make doctor visits easier, an overdue provision 2) Shared Street initiatives that could make wheeled mobile gear and slower walking a more welcome part of the urban landscape, a nice crossover with sustainability advocates 3) seniors-only shopping hours, which just seems decent and humane in general, especially in deep winter. I’m watching my city of Boston offer temporary ramps to restaurants who are expanding their outdoor dining environments into the street itself—restaurant owners can get an accessibility toolkit, too, which bodes well for longer-term literacy among businesses, I think? But it’s been deeply troubling, too, to see the easy recurrence of eugenic thinking in the discussions of medical rationing and so on, and what that means for built resources in general. Thank goodness the disability community is as connected and vocal as it is on this matter. It’s a never-ending shadow at our civic door.

Other than pre-ordering your book, how can people support your work?

I would ask nondisabled people, if they want to become real allies, to start with the wonder of their own bodies, which are no more and no less than needful, interdependent, mega-organ houses. We are each adaptive and mysterious in all our embodied forms, and always changing. I don’t need warm-hearted inclusion efforts; I need a widespread investment in vulnerability and assistance as a natural, commonplace, even salutary form of human experience.

Is there anything else you’d like to share? 

I want to voice my full and enthusiastic support for #ownvoices and first-person disability justice initiatives. If you look at my work, I think you’ll see that I try to do my part in centering disabled voices, full stop. I’d also like to keep articulating a place for folks like me, whose role in a life-long ecology of care as the parent of a person with Down syndrome implicates my very material life permanently and therefore connects me in a powerful, existential way to all disabled people. Sometimes I see disabled activists having a real eye-roll response and making caricatures of “disability warrior moms,” and I must say—that stings. I see where it comes from—there is indeed a long ugly history of nondisabled parents of disabled people overstepping, making their own stories primary. But if disability theory means what it says—that its critique knocks at the very foundational ideas of individualism and productivity, refiguring human dignity in a life with care—well, I think we have more in common than not. We’re not the same, but we’re in this together. I’d like to keep doing all the coalition-building we can. As Adrienne Maree Brown says, it takes a lot of voices to align a movement.

ABOUT

Sara Hendren is an artist, design researcher, and writer who teaches design for disability at Olin College of Engineering. Her book, What Can A Body Do? How We Meet the Built World, comes out on August 18—a look at the deep creativity and urgency found where disability meets design, with wisdom and ideas for building a better world for all of us. Sara‘s work has been exhibited widely and is held in the permanent collections at MoMA and the Cooper Hewitt; her writing and design work have been featured in The New York Times, Fast Company, and on NPR; and she has been a fellow at New America and the Carey Institute for Global Good. She lives in Cambridge, Massachusetts with her husband and children.

Twitter: @ablerism

 

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