Imagine a world where hearing aids were no more stigmatized than eyeglasses, where chairs gave hugs, where lecture podiums were adjustable, where the raised points of braille were the latest tattoo trend. What if we valued human difference? What if we stopped asking people with atypical bodies and minds to pass as “normal”? How might we revise the built environment—our schools, our offices, our cities?
What if we began, in the words of artist and designer Sara Hendren, “to see ability and disability as an exciting, expansive lens with which to think about many bodies and many kinds of needs”? Maybe the “future of the body” is a Choose Your Own Adventure, in which everyone has agency and options.
About ten years ago, Hendren changed her own future. She dropped out of a PhD program in European history and, after some soul-searching, took up a new line of inquiry: adaptive technology. Now, as an assistant professor at Olin College of Engineering, she teaches a class called “Investigating Normal” and leads the Adaptation + Ability Group’s research lab. On her blog, Abler, she reviews prosthetics of all kinds, from all-terrain wheelchairs to “socially adept” handbags that unfold, like accordions, to create privacy in public spaces. She argues that “assistive tech” is not only the concern of users with diagnosed “impairments,” since all bodies get help all the time. Hendren is also in the midst of writing her first book, forthcoming from Riverhead, on the design stories of everyday objects and disability as a locus of innovation.
As a designer-activist, Hendren is best known for the Accessible Icon Project, a street-art campaign to amend the International Symbol of Access, the blue square overlaid with a white image of a person in a wheelchair, which was designed in the 1960s. In 2011, she devised a new symbol in which the person portrayed is leaning forward in their chair, rather than sitting passively. She went around Boston, slapping stickers on old signs and drawing media attention to her guerrilla approach. Since then, the icon has been acquired by MoMA and adopted by localities all over the world.
For Hendren, though, the project is ongoing. “We wanted this icon-action to be the occasion for asking questions about disability and the built environment, in the largest sense,” she writes on the project’s site. “Who has access—physically, yes, but moreover, to education, to meaningful citizenship, to political rights? Framing this work as a street-art campaign allowed it to live as a question, rather than a resolved proposition.”
Hendren’s most recent design venture, Slope : Intercept, focuses on inclined planes. Her ramps, which have been installed in Cambridge, Toronto, and Seoul, are used for practical transport, dance, and play. They appeal to skateboarders, wheelchair users, and caregivers with strollers. Part of the project’s aim, then, is to bring together prospective allies in the fight to redesign urban centers, to make them more convenient—and more fun.
When Hendren and I spoke over Skype, we discussed humane engineering, integrative thinking, and disability studies as a way to understand the cyborg-self. Afterwards, I closed my computer, grabbed my keys, and went for a walk. I saw with fresh eyes the objects and architecture I depend on, and envisioned what an accessible future might look like.
—Gillie Collins for Guernica
Guernica: What are the dominant narratives you notice in media coverage of disability?
Sara Hendren: We live in a time where there is a lot of deadweight around disability tropes—they’re pretty narrow and monolithic. One, I would say, is the “overcomer story.” In disability studies, we call this the “super-crip.” “Crip,” short for “cripple,” is a political term that’s been reclaimed by folks in the disability community as a term of empowerment, as self-naming. The “super-crip” refers to media representations of people who have to be extra human in their ability in order to overcome a disability. They have to be living a quite extraordinary life to be a “super-crip” and a kind of superhero. So the narrative arc is one of overcoming, and the person is a flat character.
Another is the sentimentalized disability story. If I had a dime for all the narratives—especially about people with developmental disabilities—that had swelling piano music in the background, I would be a rich person. This is everywhere. We are cued by the media…to feel a deep pathos for these people, which edges into pity. Again, that’s a kind of flat character. It has no dimensionality.
A third narrative I have noticed is the “cyborg superhuman.” This is everywhere, especially now. It’s a super optimistic and high-tech savior trope about people with replacement parts being carried off to the post-human. Here, technology always solves disability, and the emphasis is on the technology itself. These stories include, plenty of the time, technologies that I’m really excited about—but there are also pitfalls. They tend to choose technologies that are exclusively high-tech tools, which are expensive, probably over-claimed in their capacities, and available only to a few people.
I’m painting a pretty grim landscape because we suffer from a lack of imagination and dimensionality about people with disabilities, people with atypical bodies and minds, who are disabled by contemporary industrialized life and its landscape. We have a long way to go.
Guernica: How does the field of disability studies challenge these narratives?
Sara Hendren: Disability studies, as an academic field, has done a huge amount of work to tell new stories, to situate the lives of people with disabilities in a past that is reconsidered, in much the same way that we reconsider gender and race. But, as an academic enterprise, disability studies is still new.
Guernica: I’m interested, then, in your hybrid approach to grappling with these issues: on the one hand, you bring an academic lens, but you’re also very much engaged in the making of new art and technology. How does your work relate to disability studies? Is it a critique?
Sara Hendren: I’ve just laid out those three narratives that I’m trying to work against, and one way to do that that’s particularly convivial, I think, and powerful, is by artifacts, installations, sensory material. Through design work and artwork, then, I involve the material artifacts of disability, the politics and sociality of those objects. I understood coming up on a decade ago that you can ask different questions of that material culture—the artifacts, the prosthetics, the extensions, and, indeed, the physical environment—in the proposing form of design work, in addition to the humanities form of critique that’s textual, linguistic, and academic. If you do, you can get a lot of other audiences to pay attention and maybe ask questions, too.
The ramp, for instance, is a classic architectural icon, which was likely critical to building the pyramids and other ancient architecture. This bit of physics, this inclined plane, makes possible the alteration of force and all kinds of mechanical work. It is used in famous buildings all over the world, and we think of this as a very familiar object. But [in my Slope : Intercept project], I make a weird Venn diagram between wheelchair users who depend on ramps for access and skateboarders who use ramps for play in the built environment. Using a material object, a set of installations, museum exhibitions, and attendant workshops, I am trying to say that disability is a site of invention and creativity. It is a site of profound humanity and a shared public concern. In those ways, I’m trying to operate against those big media narratives.
Am I working against disability studies? I wouldn’t say “against,” exactly, but I would say I think my post is to be a kind of translator for disability studies, by taking an optimistic view of technology, with caveats. There is something about design work that is constitutive and, in the end, optimistic. It’s putting forth an idea.
Guernica: It’s not just problematizing. It’s assertive.
Sara Hendren: Exactly. I often say I want a big STEM—big science—that medicalizes disability to walk toward a kind of humanities and critical design disposition. But I also want the humanities to walk toward the possibility of good human-centered design. The humanities should explore propositions and assertions and questions in the form of sensory material. We need to be unafraid of multiple audiences; we need to solicit them. My disposition is an open invitation.
Guernica: On Abler, you write about the value of cross-pollination between the humanities and sciences, between specialists and generalists. Meanwhile, in your own career, you live out these ideas: you teach engineers at Olin College, though your background is in the arts and humanities. I’m wondering if you have any ideas for how this bi-disciplinary approach might be institutionalized in universities on a larger scale.
Sara Hendren: I’ve been working with some colleagues here at Olin. We are applying for funding to try to model these things out a bit, to represent some of how we do it at Olin, and to learn from others as well. I’m lucky because I’m at a place with no departments—it’s kind of amazing—that does a huge amount of integrated, meaningfully interdisciplinary work. We also operate without a tenure structure, and it’s not in a neoliberal cutthroat way. Instead, what we do here is we have a six-year contract. We have research, teaching, and service the way you have in academia, but we call it “external impact,” “developing students,” and “building the institution.” The “external impact” part is co-constructed, so I am able to say that it matters to me to be part of exhibitions and to speak to multiple audiences. And that’s the impact that matters to me: to be speaking between and across publics, including nonacademic audiences.
So, I would call on academia to try to break open some of the traditional incentive structures, because there usually are no rewards for operating in an integrated way. But I think plenty of people are making that critique—saying we should get out of silos, be more interdisciplinary, etc. Removal of barriers is one thing, but I think we need more.
Kathleen Fitzpatrick [associative executive director and director of scholarly communication of the Modern Language Association] has a book project underway in which she talks about “generous thinking.” This is going to sound hopelessly earnest, but I’ve come to believe that it’s true: a kind of generosity with one’s own disciplinary status and a lack of apology about what you do know and you don’t know is key. For instance, I am committed to plain speech, and I am trying to cultivate a dispositional generosity about what’s possible. I think it’s about building one-to-one a kind of invitation for a knowledge that transcends mere interdisciplinarity, which isn’t, “Here’s the art on Tuesday, the science on Friday.” We need a new kind of integrated thinking, and that takes a belief in other people.
Guernica: Does design allow for integrative thinking?
Sara Hendren: For me, design has been a super productive house to work in precisely because it’s blurry, very integrative. Design can be critical design, right around the pole of art, but it can also be right next to engineering. I would like more people to rescue design from its dominant, cookie-cutter design-thinking paradigm. [We would do well to] use that broad category, the blurriness of design, to make proposals and engage critical questions.
Guernica: In a 2012 interview with Rhizome, you said, “People with disabilities who are using assistive technologies every day are our richest resource of wisdom about the cyborg-self and how we integrate technologies into our lives.” Could you expand on this?
Sara Hendren: The first thing is to think about the redundancy of the term “assistive technology.” Every tool you have in your life is offering assistance. “Assistive technology” comes from a field called “rehabilitation engineering,” but, in fact, your knife and fork and your chopsticks and your glasses are assistive technologies, too. That’s one move.
If you see all technologies on the same continuum, then you [can] start to [talk to] people whose bodies are already integrated with technologies to an even more complicated degree. A wheelchair [for instance] is a more integrated machine system than your eyeglasses. So, if you ask wheelchair users about their experience—if you ask without presumption, without charity, without pity, without a kind of “othering”—then you get really good answers. Those kinds of use cases are rich fodder for thinking about things like immersive VR headsets. In other words, if you want to think about the future of the body, ask people who really understand the nonnormative experience of the built environment.
Guernica: It seems like listening to the experiences of people with disabilities is an important part of the design process. But this reminds me of Audre Lorde’s criticism that, when it comes to issues of race and gender, we ask the oppressed minority to educate the privileged class. Is there a tension there? What are the best practices for engaging these conversations?
Sara Hendren: I run my class “Investigating Normal” as someone who performs as an able-bodied person, as someone who shares intimate life with people who have disabilities. So I have this one-step-removed take, but this means I can create a stage where we can have these conversations, hopefully without overly burdening any one person to represent every second.
We always have several collaborators who have atypical bodies or minds, and I say to people beforehand, “Look, this room is full of engineers, and they are on a human-ability spectrum too, but, for many of them, disability is a new topic. To what degree are you comfortable talking about both your artwork and your subjectivity, your experience?” To do the allyship work that I want to do, I have to be able to declare my classroom a safe space to ask questions that [students] are afraid to ask. Everyone so far has said that’s fine. In other words, when [art historian and curator] Amanda Cachia comes to my classroom, we ask her, “Is it okay to say ‘dwarfism?’” Students really need to know.
There is a tension here in terms of educating people, but we pay people for their time, and we hope we’re not taxing communities. I think it’s a bounded experience where, in order for my students to go on and walk toward these issues politically and in their professions, they have to feel like they’re not going to screw it up. Most people are not uninterested in disability; it’s that they’re afraid of doing it wrong and offending people.
Outside of the classroom, I try to do some of the work of teaching people about disabilities. I just posted on Abler a “Disability Studies 101,” a list [of resources on putting disability in social context]. Some of that’s tuned toward folks in tech, but not always. For my writing, I’m picking The Atlantic Tech and these other popularizing venues precisely to try to be an explainer because I don’t deal every day with people underestimating me—I mean, except for the fact that I’m a woman and a mother, but not around disability. In other words, I’m trying to represent.
Guernica: In your keynote speech at the 2015 Eyeo Festival, a coding and design conference, you describe how you got interested in adaptive technology. You go back to the early 2000s, when you dropped out of a PhD program and gave birth to a son with Down syndrome. I was wondering how you went about educating yourself in a field that was, at the time, totally new to you?
Sara Hendren: After my son was born, I just looked around. My antennae were already picking up visual culture because that’s my training. I started to keep this running taxonomy of the built environment, typefaces, his glasses, leg braces, and adaptive toys. This was a brand new world, and I was captivated by it.
I took a class in LA about making public art. [I realized] there was socially engaged public work I could do. Doing Abler was very intuitive and practical for me. I had three children in five years, and I moved across the country. I was still reeling [as] my husband and I tried to figure out how to raise our son and in what school system and all that. It was nuts.
At the time I started Abler, I thought, “I need a website for my practice, which is an art maker, but I don’t want it to just be a gallery of my work. I want it to be a place I can point to other people’s work and be collegial.” I watched some bloggers, like BLDGBLOG, doing that. I thought, “I’m just going to collect all these things that could be considered prosthetics, some of it is squarely in disability culture, and some of it is wearable art.” What grew from this blogging practice was a point of view.
Because of being in academia, I knew how to educate myself on disability in an academic sense. I went to Harvard’s GSD, the design-studies program, which was almost entirely self-driven. There’s literally one class you have to take, and it’s two years. You do whatever you want to do. I had three kids at home; it’s incredible how organized you get. I was there to do what I needed to do, which was to workshop some lengthy projects. I took classes in anthropology—because disability studies kind of lives everywhere—and in the media lab. I thought, “What do I need to know? What are my questions? How do I fortify this stuff?”
Getting older is a great thing because you stop apologizing for what you don’t know. I used to think I might need to go back for a PhD and learn how to code to be legible in engineering. At the time, I thought I could do work that was complementary to STEM. Now I walk into a room and I have no shame at all in what I don’t know about engineering—because I know what I do know. It’s a process of increased bravery over time and belief in the humanities, finally.
I also was given this gift of clarity and conviction by my lived politics. I wake up every day and think, “Is this still important? Let me see. Oh yeah, this is still important.”
Guernica: What does it mean to “perform” as an able-bodied person? This term is used in your syllabus, too. Your class “Investigating Normal” sets out, in your words, to “look at popular prosthetic tools and examine how their users ‘perform’ them.” How is using prosthetics—or not—performative?
Sara Hendren: I mean this in the same way that we talk about gender performance, or a constituted self that is how we register in the world. Our appearance, but also our body language and behavior, are all choices, more or less, depending on our capacities and our cultural context—what’s permissible and so on. These are the ways that people are making meaning of who we are and what we represent. Gender and race, for example, are things we perform, some things by choice and others not. They are ways we make meaning of one another. Around race—and around visible disability—we don’t have choices about how we perform. People are making meaning of who we are based on our appearances.
These are familiar concepts, but people think less about the material language of prosthetics and how that then makes those performances happen. There is a lot of stigma about hearing aids, for instance, and there is not about eyeglasses. No one hesitates to wear eyeglasses, but older people who resist hearing aids report being treated like they are globally less able when they are using a hearing device. However, those two things are corollaries; they’re doing sensory augmentation work. The difference in how these tools are interpreted socially is contingent and accidental. These are cultural ideas.
Prosthetics can be another way of performing capacity, agency, and independence, as opposed to the other way around. But the medical logic and history of prosthetics are such that people medicalize tools and medicalize people, categorizing and classifying. When I say I perform as an able-bodied person, I’m just accounting for the fact that you don’t understand, you [don’t] know for sure, what anybody’s mental universe is like and what kind of pain people live with.
Guernica: In my head, there’s a fine line between the body of the future and the future of technology. Sexy digital devices and brain-computer interfaces come to mind, as opposed to building things by hand, like cardboard furniture. It doesn’t seem like high- and low-tech prosthetics are mutually exclusive. So why do we tend to treat them as such? How do we fix that?
Sara Hendren: Across the board, there’s a conflation of technological novelty in mechanics with impact and benefit—and even impact and benefit are different metrics. [We assume a tool] needs to be novel in order to be transformative and to point to a better future. Or it needs to be scalable to the tune of one hundred thousand—like a widget—in order to have impact. We are often less concerned with benefit: Whose life does this change? What does this make possible? What is the world asking us for?
Whenever people speak rhapsodically about the ninety-thousand-dollar myoelectric arms that are the peak of artificial limbs in our culture, I am interested. I think they’re fantastic, for people who need them. I just always point people to Jaipur Foot Organization in Jaipur, India, which makes lower foot limbs out of rubber—and it’s given away a million for free. What I want is for a tech-obsessed age to widen the definition of technology. That’s all you have to do. Just count it all as technology.
Guernica: When I think about the future of the body, I also think about the future of my body—which is to be older, weaker, closer to death.
Sara Hendren: Pro-disability power and disability acceptance do not mean romanticizing age or bodily frailty. No one celebrates modern medicine and interventions more than me, including and perhaps especially the high-tech cusp of research around cancer or whatever it is. But I really do think that all states of the body bring with them closures and openings.
I want a technology that, yes, preserves independence in old age when it’s wanted. I want a technology that preserves health as long as it can, and augments health when it’s called for. But what I often call for, too, is technologies for interdependence. The enduring human always needs assistance. The goal is not, in other words, elimination of assistance or elimination of exchanges with one to another. The goal is thriving communities over the whole life cycle.
I’m glad that you [brought this up] because people do say to me, “Aren’t you just romanticizing situations where people are really struggling?” I feel pretty clear-eyed about the hostile world that my son has to enter into, despite living in Massachusetts in 2016 and having the best possible life, really, for someone like him. So I don’t want to be a romanticizer, but it’s this thing about interdependence and community that I feel is missing from the dialogue.
Guernica: As you point out, what is at stake is our sense of personhood and independence as the ultimate goal of a life. In our culture, growing up means being as independent as possible for as long as possible. What have you designed—or what have you seen designed—that challenges this notion. How does technology promote interdependence?
Sara Hendren: The current iteration of my ramp project, Slope : Intercept, is a modular architectural kit that I’m developing with the dancer and choreographer Alice Sheppard. It’s a movable set of architectural pieces for installation in public and for play. It’s suitable for wheelchair use, dance, and play, but then it also works for scooters, bikers, kids in strollers. To me, that’s a kind of literal and hopefully metaphorical placing of needs and bodies—and our will for each other. It’s both symbolic and functional.
I also think about my friend Steve, who has advanced ALS now, diagnosed over a decade ago. He is trained as a landscape architect, and, once he got his diagnosis, he partnered with a nursing home director to dedicate a whole floor of a nursing home to people living with ALS and MS, people who have very limited mobility progressively. He now has only eye movement, [but] he rigged up this whole software system whereby he can, with eye-tracking technology, mount his wheelchair, control the HVAC and media in his room, transfer his own body to the bathroom so he can do toileting independently, open the door, and summon the elevator. But the bigger thing Steve created was an ecology of care in which he himself could live out his life, so it is not him living alone with technology. There are people who prepare his food and feed it into his mouth. He lives with nine other people in a beautiful environment where they don’t pretend they don’t need each other. They don’t pretend that their lives are easy, but they also don’t [act] like there’s no inventiveness and creativity there. Steve’s busier than ever.
ALS is hard. I think people immediately go to the debate about assisted suicide and quality of life, but if you saw him and those people, you couldn’t land at, “This is all degradation.” It’s something else. It’s more complex. So that’s what I mean about interdependency and technology, the orchestration of people and stuff and communities. It’s where I want to live.
Guernica: Where technology facilitates a relationship instead of replacing one.
Sara Hendren: That’s right. And you have to be disciplined and specific about this stuff. Like, I’m not one of those Luddites who thinks, “Oh, everyone on their phones! It has taken things away.” I mean, this phone is transformative for my blind friends and people with limited hand [mobility]. It’s not a simple story, so I refuse, rhetorically, to be in one camp or the other.
Guernica: Part of the problem, it seems, is that we frame discussions as an either-or. You’re either a Luddite or a tech utopian, an optimist or pessimist.
Sara Hendren: This gets back to the idea that living with atypicality is a site of invention and creativity. I don’t mean that in a kind of overly sanguine way. There are hurdles too. People see disability always as a diminished form of normalcy or a form of normalcy that has to have this pathos around it. But a disabled person’s experience is as complicated as any given life. It’s got heartbreak, sadness, joy, and frustration, and every possibility and experience in it.
If you see that, then you see the invention and creativity that comes from looking at people with nonnormative experiences. If you can just strip away this freighted cultural baggage, you can get interested in what people do. The body is adaptive—that’s what we know—in every life cycle and form, always. That’s exciting to me.