Talking Headways Podcast: Disabled by a World Full of Stairs
This week, we’re joined by Sara Hendren, author of, “What Can a Body Do? How We Meet the Built World.” In this episode, Hendren chats about how we think and talk about disability, reframing independent living, and designing a humane world for everyone.
For those of you who prefer a transcript, an except of the conversation is below the audio player. If you want a full transcript (with typos!), click here.
Jeff Wood: What has been the response to the book so far?
Sara Hendren: It’s been incredibly gratifying to hear from people who feel like the stuff in their lives has its proper place. In other words, if you look at the kind of tech journalism around prosthetics, there tends to be this very breathless innovation future story being told. And a lot of it emphasizes the technology — like, look at this high-end sort of innovation that comes in and swoops in and saves someone with a quote unquote “broken body,” right? And, really, it’s much more interesting than that. I mean, disabled people have been tinkering with, adapting their worlds, at all scales for a long time and in ways that are hidden because they’ve gone to the mass market or are beneath the concern of kind of the high-tech laboratories — it’s more in living rooms, that kinda thing. Or they happen at scales of cities and streets that have kind of gone to sleep in our cultural imagination.
So once I discovered that, I wanted people to know that. So I’ve heard from a lot of folks who are disabled, who would say, “Thank you for getting it right.” And I’ve heard from people to who want to go into design and who can see themselves in it. And there are lots of people who go into design at different points, right? So people who figure out that it’s occupational therapy or it’s special education or it’s design and fabrication.
To be honest, it’s a quiet book in a loud year. So there is no getting around the strangeness of that. right? In it to bring a book out that has to be handled like a biohazard, you know, in the retail store. So it has not been usual in any way, but it has also of course entered the world at a time when a lot of us are thinking about the barriers between bodies and worlds and our interdependent nature or the nature of our interdependence with one another, right? In our very bodies and the mask as the, you know, biological and also political prosthesis. You know, it’s been such a strange time to be thinking through these things, anew.
Jeff Wood: You had that discussion about the media kind of covering the sensational aspects of what can happen. And I feel like we have this in the transportation and urban planning space, too. We have people who will, you know, be walking to work every day and then the community gets together and purchase them a car. And it’s something that people go through and they get a lot of support for that. But then people aren’t looking, they are doing that one individualistic thing, but they aren’t looking at kind of the overall policy related to that. And it made me think of that when I was reading your book. And I was wondering about the Aeron chairs as well: who should we be creating design for? And I’m wondering like how that resonates with you in terms of like these singular interventions versus like an overall policy approach.
Sara Hendren: I’m glad you brought it up. I tried in the book to structured at scales that expand out from the body. So the chapters are limb, chair, room, street, and then finally clock, which is a conceptual idea. And I try to cover all of those scales precisely to kind of get at this multiplicity that’s related to what you’re talking about. So I do cover prosthetic limbs that people wear on their bodies. Some that are bespoke and some that are mass manufactured. Same for product, same for architecture interiors, and then also urban planning. All of that is to show that good ideas can come from lots of places. And you are right that perhaps especially in an American context, in an age of viral media, there are a lot of interest in the kind of heartwarming stories of one, what it looks like, a kind of tech savior moment.
The notorious example in disability tends to be the wheelchair that climbs stairs, right? There tends to be a lot of excitement online about equipping a wheelchair to kind of overcome that built environment barrier. And I’m not here to say whether those things should be built or not, but what you will find from the disability community is a much greater interest in a world with curb cuts and ramps and elevators built into it. Why? Because at infrastructural scale, you get an acknowledgement of lots of kind of bodies trying to make their way through with smooth passage through the built environment. And you get at infrastructural scale that guarantee of a more elasticized and friendly city, right? So curb cuts folks who would listen to your podcast, will be familiar with curb cuts as this really quite improbable and astonishing infrastructural scale that literally bent the built environment, right? And how interesting it is that an anti-discrimination law had in it architectural code. They understood that in a very atomic and material structure of the world could be biased, right? And so to then roll out, curb cuts at a city scale, is an acknowledgement of cities that make room for lots of kinds of passage through the built environment.
So we can be sanguine about better products. Absolutely. But we can also then ask for a world that with a legal mandate at civic and the infrastructural scale, provide something for a more of us more than the time. And people want to curb cuts, of course, as one of the “universal design” wins of the world, meaning, you know, wheelchair users, what are the ones who lobbied for curb cuts, but lots of people benefited. And if anyone listening has pushed a stroller through cities or walk to a bike or dragged behind them, wheeled luggage, same thing with the elevators and so on. These things were thought of as kind of a very narrow niche uses that turned out actually to be friendly to a lot of bodies.
That’s not the only reason to do them. If you want a democratic culture, you build for everyone to get around. Nonetheless, we see that bodies are inherently prone to vulnerability and fragility and to changing needs of dependence over time. So there was an insight there that’s useful for everyone. And technologies break. You know, you want good, strong, supple, non brittle set of systems for getting around.
Jeff Wood: If you go to the Ashby BART station, you come up with the Ed Roberts campus, right. And you can see that in action at the BART station. You talk a lot about Ed Roberts in the book.
Sara Hendren: And lots of people don’t know his work as a civil rights leader. And there is a key kind of design set of elements in that story. And if people in the Bay area, it’s worth the trip to the Ed Roberts campus on the Berkeley campus because of the glorious, beautiful red ramp that is built in that building. It’s open to the public and it’s a tribute in his name. So Roberts was a high school student in California who was a polio survivor in the 1950s and patched into his high school classroom and to community college via telephone. He used a wheelchair his whole life, along with a lot of complex medical equipment as a result of his condition. He was encouraged after some time at community college to apply to Berkeley and got in. But Berkeley was not prepared to make room for him in their dormitories and other kinds of structures, but they couldn’t rescind his admission. So he went to the hospital on campus and talk to Dr. Henry Brown, who had worked with a number of polio survivors. And Brown said, “Well, why don’t you live here in the hospital as your dormitory?” It sounds like a kind of patchwork fix. And yet that was a kind of design decision to see that hospital reframed as a dormitory room, but then launched a whole new possibility for other students to come and live in that hospital wing while they were students at campus in the ensuing years.
And so there were a dozen or something students living there in the 1960s, along with Roberts. And that proximity of living together, having changed that literal architecture into a symbolic architecture of being on college campus, being the architects of their lives, but involving medical help with their independence — that was the seed of something really big; it launched an idea about who they were going to be. You remember, these were folks who had grown up living with their parents and being treated as clinical subjects only right? As quite passive in their own lives. And here they were arriving on campus to choose their majors and to become adults in the way that college students always do, but they were also managing the hiring and firing of personal attendants, and thinking about how they were going to orchestrate their day and also manage their time and so on.
So the hospital became a dormitory and independence for these folks was also reframed as something that could include help in it. So the key figures in that moment said, “We’re not going to talk about independence as self-sufficiency; we’re talking about it as self-determination. So we can be the agents of our lives and still have health.” And that launched the first Center for Independent Living, which is a storefront for folks off of campuses to outfit their homes with adaptive architecture and so on, but also to hire and manage personal care attendants. And that Center for Independent Living became the independent living movement. And those centers are now replicated all over the United States. So it was a paradigmatic shift in thinking about what it means to greet the built environment with assistance in it.
This is really quite astonishing, that idea. As with every good idea in the world, it goes to sleep as a kind of a novelty, if it becomes kind of part of the fabric of our existence. And my sense is that books do their best work when they awaken us to those histories.