Sara Hendren’s work challenges our assumptions of what normal is— in engineering, design, bodies, and minds.

She’s currently an artist, designer, and researcher in residence at Olin College of Engineering, where she’s PI on an initiative to bring more Arts and Humanities experiences to Engineering students and faculty. She also runs an adaptive technology work group and writes about related topics at Ablersite.org. Her work has been exhibited around the world (including the White House), and is in permanent collections at MoMA and the Cooper – Hewitt. She’s currently in the process of writing her first book for Riverhead/Penguin.

We talked over Skype about some of her work and motivations—including her favorite projects, her thoughts on the importance of considering those with disabilities when designing something, and how keeping busy can be a detriment to good work. The transcript has been lightly edited for breadth and clarity.

You’ve done and are doing so much cool work—I’m not sure where to start! Do you have a favorite project you’re most excited about right now?

Let me start with Engineering at Home. That’s been such an interesting project to work on, and it’s unclear, in an interesting way, what my role in it has been. It’s a gonzo archive of tools that are used, made, or assembled by a woman named Cindy, who’s a quadruple amputee. She had a heart attack at age 60 and luckily survived that. But with complications resulting from a coma, she lost both of her lower leg limbs and most of all ten of her finger digits. Quite a lot of loss of both gross motor and fine motor skills that then resulted in a new body for her, quite late in life.

I met Cindy in the context of Olin College with an anthropologist colleague of mine, named Caitrin Lynch. Cindy came to a kind of informal workshop that I was running for students about disability technology, and brought this giant bag of exquisite tools. I looked at Caitrin and said, “We have to do something with this. We have to show/ give some attention to this. It’s probably a website, let’s figure this out.” And so, we decided to engage a really terrific, talented web designer/ architect named Casey Gollan, and a terrific photographer named Michael Maloney, and try to bring the same kind of design attention to Cindy’s tools that the latest innovations in robotics would normally get.

The central argument of Engineering at Home is that Cindy, as an amputee, qualified for what looks like the best that money can by. That’s an $80,000 artificial arm and hand. It was a complicated insurance process, she got trained to use it, and placed a lot of hope on that idea. But it turns out that that object— which has gotten so much attention and been pointed to as the promise for the next generation— it turned out to be utterly useless for her. Probably transformative for other people, but for Cindy, not so much. So in its place, she’s assembled this whole family of tools that make her life work.

It’s interesting to think about our role in bringing this project to the public eye. We weren’t the designers of this project. We were sort of curators, and we were trying to frame a point of view, and again, we were bringing this design treatment and attention to something that already exists, that didn’t come from us.

So we put this out in the world two years ago, and we’ve just been so pleasantly surprised that there’s been a huge response to it. We won an award at an anthropology conference, and then we were invited to show it off in three exhibitions, including at the Victoria & Albert Museum this spring. It’s called The Future Starts Here. They’ll be including the kind of design and engineering that you would expect in a “futures” exhibition, tech that’s expensive and high tech and forward looking, but Cindy will be prominently placed there as a story that’s also about making the future and also about agency and low tech, simple tools. So I’m just kind of thrilled about that project, even though, and maybe especially because I was not the author on it. It was a way to shine a spotlight on something else, and then to craft a point of view about technology that I feel so strongly about.

That’s so lovely! And I heard about the V&A—Congrats!

Thank you.

Anyway, I was hoping to talk about Engineering at Home because it feels like the perfect topic for Make:, in that it’s rebranding engineering in this DIY spirit and highlighting people who might not look like or have the background that we usually expect from engineers.

That’s something that a lot of your work seems to do: questioning what engineering looks like, and making room for questioning and uncertainty in engineering. In my experience, we usually think about engineering as question answering or problem solving and art as a place to ask and examine questions. So I wonder what you see as the role of your arts and design background in this engineering world, and what that means for you when defining or redefining engineering.

Oh boy, yeah that’s right at the heart of what animates my work: those questions. I’ve been reading a fair amount of Maxine Greene’s work. She was a philosopher of aesthetic education, who thought a lot about teaching. She talks about the work of “social imagination” that’s happening with the Arts, especially when activated in classrooms, when people are gathered together making sense of some artifact or some story— what’s happening there is a kind of collective imagining. And she says something that I find I often say to people: that the Arts and Design are a way to keep claiming that the world as it is might be otherwise. Things might be otherwise.

And I think, in the history of design, there is certainly that kind of problem solving that looks like it comes from a technocratic or policy driven series of decisions, but I’m trying to awaken an alertness to the fact that those design decisions are still a kind of social imagining. Maybe they’re coming from policy, or top down in a technocratic, bureaucratic way, but they’re evidence of social imagination. Maybe of other people, but that means they’re also sites for social re-imagining a different world.

Sketches of an easily transportable lectern for Amanda Cachia— developed in Sara’s A+A group. More info

And Engineers are really good at this. Once you understand the workings of the world, that they are the product of human decisions, then you understand that not everything that is inherited in your built environment is the way it must be. The possibility for otherwise is everywhere.

I have, in my training, thought the Arts are the province of these questions: the what if questions, and alternate future questions, the inversion of an expected story. But what I’ve found so bracing and important about working with Engineers is that they also understand that. Once they understand the physics, the mathematics, the mechanics of the world, all the 1s and 0s, then they’re the ones with this kind of deep sense that the world doesn’t have to be as it is. And what’s fun about going out to dinner with engineers is they’re looking at the latches on the window, the threads on the salt shaker, the joinery on the chair and going, “this is a bad design, why is it this way?” They understand that things can be undone, unwound, and reversed.

So Engineering has become a really productive friction for me. The big dominant narrative is that Engineering is all about having a hammer and looking for nails, trying to solve problems, but really, at its best, Engineering is about doing what Arts do. And then Design of course is the big canopy in the middle of those things, saying, “what looks like a fixed world that’s all around us, built and social and political, might that be otherwise? Oh it might.” So let’s look at how the stuff we build can waken that idea that things might be otherwise. Maybe that’s a proposal for what we want. Maybe just to ask “what if.”

I have really labored for the past ten years to insist that a body of work of my own could weave in and out of what might be called Art and fits in a gallery exhibition, and what might be called Engineering and go out in the world and influence industry. I mean I will probably not be the person who invents the thing that goes to scale, but I hope to influence both industry and culture.

Following up on that last phrase you said, “goes to scale”— your Accessible Icon Project is one that came from this nugget of a “might be otherwise” to a pretty big thing. I actually started to see those icons in my college’s bathrooms not too long ago.

That’s true! That one actually has scaled beyond my wildest expectations. But it’s revealing that I sort of didn’t make that connection, because that project, although it began as a street art project, as you probably know, its work really started when two things happened:

One is, my collaborator Brian Glenny and I were approached by an old friend of mine from college who’s a graphic designer, who said “I think I can help you make this a little bit more of an official icon, if you want.” And it turned out people were asking us, like “that’s great you have a street art project, we really want a more official icon to use.” So Tim Ferguson Sauder edited my original to become an official icon, one that adheres to isotype standards, which we then put in the public domain so it could be used for any purpose by anyone— we’ve never made money from it.

But the other catalyzing moment was when a non profit, Triangle, Inc., contacted us and said, Why don’t we make this into an event? We need to repaint our parking lot symbols anyway, you’ve got this new one, we’ve got a volunteer day, couldn’t this be a whole happening? And that’s when I went: Oh, right. This work as a durational and social work is far more interesting than the artifact itself.

And that was always true. That first icon— I have no graphic design training at all— I drew it with a ruler and pencil and then the sticker company cleaned it up. In other words— people ask me all the time, Olin College doesn’t yet have that symbol, or I want to get that symbol, or why doesn’t it exist somewhere else, and that’s not actually occupying my brain: who’s using that particular symbol and who’s not. What I’m interested in is more Maxine Greene. I’m interested in wide awakeness, in people going, “oh, now I’m thinking about this differently, and now I’m in conversation. I can’t unsee it now: the conditions of disability.” And that icon was the little sharp end of the wedge that got me there. But I’m much more interested in what design makes possible than I am in form. And so that’s why I promptly missed that connection about scaling— it’s kind of exited our authorship at this point. It’s open source, it’s public domain, I get the liberty as someone who works in a university to say, I’m not going to make a commercial object out of this, and so it gets to go out as an idea that scales. And that supersedes the form.

The Accessible Icon Project is in a show at the Cooper Hewitt that’s going to be up through September. And the Cooper Hewitt just acquisitioned it for their permanent collection, too, which again I’m just completely thrilled about. But it’s interesting because, in the back and forth— we had this whole conversation with the curators about: “what is this project?” After that dialogue, it’s going to be in the digital collection, so they’re collecting photos of the events and we’re hoping they emphasize that constellation of encounters, events, real time relationships that get formed through that thing, and that the digital part is its spirit, that it is an open source, appropriate-able, in Ivan Illich’s terms, a convivial tool: free, flexible, non-coercive.

Yeah! You have so many projects going on, I wonder if I could just clarify some of them quickly— you’re under contract to write this book for Riverhead/Penguin, you’re a Fellow with New America, a Public Scholar for the National Endowment on the Humanities, and principal investigator on a project funded by the Mellon Foundation. Could you give a quick rundown on what those all are? And your students tell me you make a point of not being busy— how do you reconcile all this work with not being busy?

I’m glad you asked me this question. Oh man. So, New America and National Endowment on the Humanities, mostly those are affiliations and financial support for the research and writing of this book. So they’re all tied up in that one project. I’m so grateful for that support!

And the Mellon initiative. So I have disability as a topic of mine, but then I have this other whole methodological passion: bringing the deep, deep insights, histories, and tools in the Arts and Humanities to bear in Engineering. I think we live in a time when Higher Education is a little bit romanced by Design Thinking. And I think there are some insights in Design Thinking, but I’m a little nervous about the way it can walk in and coopt and stand for what are ample tools in History and Anthropology and the Fine Arts to help Engineers do better work, and think about their work as culture, and all the contexts and politics involved there.

When the Mellon Foundation came to visit Olin, they said, “we don’t usually support engineering, but we suspect we have stuff to talk with you about.” So we were able to craft a series of proposals for animating our campus further in Arts experiences. Now we’re bringing creatives in residence to campus, we’re sending Engineering students out to do funded internships in Arts organizations in summer, and we’re creating a summer institute for Humanities faculty. And all that’s to signal broadly— I mean we have brilliant Arts and Humanities faculty on our campus already— this is just another way to extend publicly a point of view, to say we take the Arts seriously, not as a kind of complementary, well-rounded enrichment exercise for Engineers, but as crucial.

So between the book, and doing the Mellon initiative, was the occasion for me to go to Olin and say, I think a faculty position is probably not feasible with these other kinds of things. So we agreed on Artist/Researcher/Designer in residence and that’s a flexible kind of role that we can build together, Olin and I. Maybe it involves some teaching later, but for now it involves a break from teaching, and allows me to be affiliated with campus and to run this Mellon thing, and to make room for my own work.

And you’re right — I’m committed to not being busy. The only way I can do good work is to make time for walking and wandering, and open-ended exploration, so I preserve time for those things. I’m one of those people who believe really strongly that without making time for deep input and conversations and the kind of slow thinking Daniel Kahneman writes about, then I have nothing to say. I have no point of view. So I make room for a lot of wandering. I’m not in love with business and productivity in a straight ahead and straight forward way. And I’m trying to model that for my students. I have a life with children in it, and a public school community I’m really committed to as a citizen. I read voraciously, I talk to people who are very different from me all the time. Making time for that is really important.

And I just reject the American kind of cultural assurance that people give themselves— that they’re important if their presence is needed all the time, or if they’re irreplaceable, or needed to weigh in on every subject. I think that’s a trap. I don’t think more is more. And I’m trying to model for students that what they do and what’s on their CV is not the only thing going on for them. I spent a number of years pretty close to home when my children were little, cobbling together a life not doing a whole lot of publicly recognizable things. So there are seasons and times. And I want to model that for young people now.

Can you tell me a little more about the book you’re working on?

In a line, it’s about the unexpected places where disability is at the heart of design. Over the years, I’ve talked to people about various exemplary sites where disability and design are meeting, and I really want to explore these in depth in a book. So I’m writing about all the scales of design where disability come in to play: starting with wearables and prosthetics, going into furniture, to rooms, to buildings and then to urban planning, and ending up at systems level. Because I’m trying to demonstrate in the book that design is everywhere.

Images from the Slope Intercept website: Inclined planes as “a mode of critical play and critical access”

And then I’m trying to say that disability is actually a condition of rich dimensional experience. So it does come with challenges and mismatches with the built environment, but it also comes with deep, deep creativity and invention. And I want people to see that the experience of disability is a fundamentally human one, and what that implies, that is the interdependence between people, that is also fundamentally human and indeed universal. I’m talking about what philosophers have called the “autonomy myth” for one thing. I think Western Liberalism includes this idea of a self that is sealed off from others and that independence is the default status for a human being, but I think history shows that that’s not true.

Disability is a way to really point people to that deep insight. In other words, that people who live with disability, not to romanticize conditions of dependence, nonetheless there is a deep wisdom there, among people whose lives are more explicitly tied up with the assistance of others and assistance of technologies and interdependence on things, artifacts, systems, and again on other people.

So what really started as a book about design itself, I’m looking at low-tech artificial limbs in India for instance, cardboard furniture in New York City, Architecture for Dementia, among many others— I’m looking at concrete iterations of design and asking what went on here, and who are the people involved, what do we see in the evidence of the designed artifacts here— but the book is an extended meditation on the way disability is fundamentally human, that we all live on that continuum of human needs, gifts, interdependence, and to see it differently is again to try to socially imagine a better future.

That’s all so fascinating to me. That rings true to me that disabilities research offers insight into a lot of other areas, too. So from personal curiosity I’ve tried to do more reading into it. But a lot of what I read leaves me with more questions and doesn’t quite satisfy. Like, I’m not even sure what language to use— I’ve heard some people challenge the word disability itself, and you and others in the community, use it. I could go on about my beginner questions, but maybe a better use of our time is to ask if you have any resources, in advance of your book, that you think could be helpful in building a foundation to researching and working with disabilities.

Certainly in terms of language, yes people are all over the map, but most people I know would embrace a certain kind of person-first language when we’re talking about developmental conditions, eg. ‘person with autism’ (although that’s not universal). Most of the activists that I know would identify as disabled. Not differently abled, and that’s actually really important insight.

It’s not the end of the world if people get it wrong, but there’s a reason why people still claim the term disabled. Not because their bodies are broken, but because they understand that they occupy a political category, not a medical category, that needs to keep advocating for its rights. To occupy the status of disabled means you’re acknowledging your embodiment is with cross purposes to the affordances of the built environment, or the way education is structured or transportation operates. So people that I know would say “I’m disabled, not because my legs don’t work but because the world is full of stairs.”

So until that changes, to say “differently abled” is this kind of myth among neuro and bodily-typical people, non disabled people, to say “oh, shouldn’t we kind of cover this? In absolute terms aren’t we all disabled?” Well yes in absolute philosophical terms, but not in very practical strategic terms. We’re still talking about a world that’s inhospitable— if you look at the WHO’s stats on disability and economics, it’s pretty bleak. So folks I know would say disabled is a category we use.

Now that’s not a resource question for you, but I’d just say the language thing is complicated. I mostly say to people what I say to my students: that intention matters most of all. If you google around, you can find basic guides, but if you’re building a relationship with someone who is disabled, you can ask them. How do you prefer to be spoken about? It’s a pretty simple exchange. And what I try to do in my own work is just to make people comfortable.

In terms of resources: Vox media did a great thing on how to create a more accessible web environment. I think Stella Young— she was an Australian activist and self-advocate— she has a TED Talk that’s about what in disability is called “inspiration porn,” that’s a great basic understanding of how to get away from some of the more sentimental tropes about disability and use language a little bit better.

I also think Graham Pullin’s book Design meets Disability is a great place to begin as a set of provocations, Georgina Kleege has written wonderful stuff about how own experience. The disability series in the New York times is a great place to start— it’s in the Op Ed section— it’s almost entirely first person narratives of their own experiences. They’re short pieces. Each one has some little piece of wisdom that’s accessible and easy to grapple with, but its all really nuanced. In fact I’d probably say that’s the best place to start. Note that that’s a recent phenomenon, it’s only been going on 18 months or something, but it’s overdue, and a welcome beginning.

Carmen Papila leading an eyes-closed walking tour at Olin College. He tested an “Accoustic Mobility Device” developed in Sara’s Adaptation + Ability Group. More info here.

I look forward to checking those out. Maybe we can wrap up with one last, forward-looking question: what is the future of making and living that you hope your work advances?

I would like for the future of Making to be a broad and ever-extending canopy of practice that includes people who are not thought to be makers, and people with atypical bodies and minds, not as recipients of good making alone, but as co-creators of the built world, and as people who possess deep, deep insight about the future that we all want to live in.

I’m interested not just in clever ingenuity, but in the much more subtle, metaphorical, and symbolic registers of the Fine Arts and in keeping that central to Making. That is, not just letting aesthetics be the formal pretty housing for mechanical work but part and parcel of what we put into the world.

And I want a future for Making where the emphasis is far more on the encounters and exchanges and conditions that are made possible by our stuff, and less about about the software and hardware properties of that stuff.

I think that’s a future we can all get behind working toward— Thanks so much for your time and thoughts!


If you’re curious to see more, check out Sara’s websites. Among my favorite links are her piece for Wired Magazine, ‘All Technology is Assistive’ and her interview for Rhizome about Abler, prosthetics, and cyborgs.