Monday’s Flashback: Disabled by a World Full of Stairs

A Flashback! That’s right we’re flashing back again to Episode 308 of the Talking Headways podcast with Sara Hendren discussing her book What a Body Can Do. Sara chats with us about how we think and talk about disability, reframing independent living, and designing a humane world for everyone. This is one of my favorites and I’m glad we’re getting to share it with folks again.

Below is a full unedited AI generated transcript

Jeff Wood (1m 46s):
Sara Hendren welcome to the Talking Headways podcast.

Sara Hendren (1m 55s):
And Kate, it’s great to be here as well. So

Jeff Wood (1m 57s):
Before we get started, could you tell us a little bit about yourself?

Sara Hendren (1m 59s):
Yeah, so broadly I say that I’m a humanist in technology. I’m trained in fine arts and design and cultural history. And I’m also a professor at an engineering college Olin college of engineering, which is outside Boston. It’s a tiny little kind of laboratory school for engineering education. So no one is more surprised than me to find that I landed here, but I’m entering my seventh year. So I think a lot about how the humanities shape design and engineering. And so the last half dozen nears, I’ve been focused on all the research area of my book, which is disability and designs of all the places that bodies meet the Built world. So everything from products to environment in, you know, atypical and non-normative ways in what happens at that juncture, what do we know about it?

Sara Hendren (2m 44s):
How do we build the world’s that we want? And what,

Jeff Wood (2m 46s):
And how are you into that? How does someone get into that realm of study?

Sara Hendren (2m 49s):
Yeah, well, mostly the sort of formative moment was my own child. The first of my three children being born, my son, who is 14 now has down syndrome. And I have a number of, sort of atypicality is in my extended family, a lot of folks on the autism spectrum and so on, but really the birth of Graham was this kind of breaking open of my imagination because I watched him, you know, the earlier years in physical therapy and occupational therapy. And then, you know, just the right of gadgetry that was, you know, present in those settings. And I started to understand because of my training against, and in fine arts vehicle culture, and in history, the way that the stuff he was using was also mediating ideas about him in the world.

Sara Hendren (3m 35s):
And so not just the functional kinds of tools and support, but also the kind of symbolic work that all material culture does. And it tells us something about each other. So I started looking at that stuff and I had also dropped out of a PhD program going back to the studio, which was kind of my first training. And so I was looking at that time at the time of his birth for a way to bring together my interest in making things and my interest also in seeing things as indexes have ideas, you know, like seeing where stuff comes from and locating them and the kind of a legacy. So long story short is that after I have children, I sorta went back then to go to graduate school in design and found a way to bring all of those interests together and then landed in an engineering college to try to teach this field of what’s typically known as rehabilitation engineering or prosthetics and assistive technology.

Sara Hendren (4m 29s):
That’s its kind of normative way. You talked about the research in tech, but to teach it from a kind of humanistic and sort of critical and deeply engaged fed by disability studies, that kind of lens on building technologies. And so that’s the short version of how I sort of landed in the classroom laboratory studio, that kind of combination. And then in the course of all that work, that so many people building their own things, people who would call themselves Disabled people and discovered so many interesting stories about how stuff gets Built and ended up writing this book about it.

Jeff Wood (5m 4s):
What’s been their response to the book so far, it’s called what can a Body do?

Sara Hendren (5m 8s):
Yeah, it was called what kind of Body do, how do we meet the built world? And 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 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. So we look at this high-end sort of innovation that comes in and swoops in and saves someone right with a quote unquote broken Body. And really it’s much more interesting than that. I mean, the ways that Disabled people have been tinkering with adapting their world 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, they are more in living rooms, that kinda thing, or are they happen at scales of cities and streets that have kind of gone to sleep in our cultural imagination.

Sara Hendren (6m 5s):
And so once I discovered that sort of reading deeply and disability studies, I thought, well, you know, I want 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. You know, for us to, to, to locating that creativity. And I’ve heard from people to who want to go into design and who see themselves, can see themselves in it. And there are lots of people who go into design at different points, right? So people who figure out, Oh, it’s occupational therapy or it’s a special education or it’s maybe design and fabrication in these various kinds of ways. And so that’s been really, I mean, 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.

Sara Hendren (6m 49s):
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, the nature of our interdependence with one another, Right in our very bodies and the Masque as the, you know, biological and also political prosthesis. You know, it’s been such a strange time to be thinking through these things, a new,

Jeff Wood (7m 14s):
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 that are in Planning space too. We have people who will, you know, be walking into work every day and then the community gets together and purchase them a car. And it’s, you know, 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 air on chair’s as well. I was reminded of this one, reading about their own chairs, 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 (7m 55s):
Yeah. Completely. I’m glad you brought it up. I tried in the book to it structured at scales that expand out from the body. So the chapters are limb chair, room streets, 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. And 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 save your moments.

Sara Hendren (8m 43s):
So for example, 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 have a more elasticized and friendly city, right? So curb cuts folks who would listen to your podcast, we’ll be familiar with curb cuts as this really quite improbable and astonishing infrastructural scale that literally bent the built environment, right?

Sara Hendren (9m 33s):
Two, the Americans with disabilities act 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 and the built environment. So we can be sanguine about better products. Absolutely. Right. And we can also then ask for a World that with a legal mandate at civic and the infrastructural scale, or provide something for a more of us more than the time. And people want to curb cuts. Of course, as one of the quote, universal design kind of wins of the world, meaning, you know, wheelchair users, what are the ones who lobbied for curb cuts, but lots of people benefit.

Sara Hendren (10m 19s):
And if anyone listening has pushed a stroller through cities or walk to a bike or dragged behind them, wield luggage, same thing with the elevators and so on. And 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 to, you want to have good, strong, supple, non brittle set of systems for getting around.

Jeff Wood (10m 60s):
Yeah. I love how you’re in the Bay area. If you go to the Ashby part station, you come up with the ed Roberts campus, right. And you can see that in action. They are at the Bart station. You talk a lot about ed Robertson there.

Sara Hendren (11m 10s):
That’s right. And lots of people don’t know. I feel like that history has been lost, maybe not to your audience, but certainly to a lot of folks in the mainstream that has worked as a civil rights leader. And there is a key kind of design set of elements in that story. And as people are in the Bay area is 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 and the 1950s and patched into his high school classroom and to community college via telephone. So in terms of distance learning, he was way out in front of, you know, and sorta making that work for himself and use a wheelchair His whole life along with a lot of complex medical equipment as a result of his condition and was encouraged after some time at community college to apply to Berkeley and got in.

Sara Hendren (12m 4s):
But Berkeley was not prepared to make room for him in their dormitories and other kinds of structures, but there couldn’t rescind his own admission. So he went to the hospital on campus and talk to the doctor, you know, the, the hospital there Built on campus to sort of a clinical setting 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, which 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 there are students at campus in the ensuing years.

Sara Hendren (12m 46s):
And so there were a, you know, 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 architect’s of their lives, but involving medical help with their independence, like that was the seed. Have something really big to turn that room around, 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 you to become adults. And the way that college students always do, but they were also managing the hiring and firing of personal attendance and thinking about how they were going to orchestrate their day and also manage their time and so on.

Sara Hendren (13m 35s):
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 going to talk about independence as self-sufficiency, we’re talking about it as self-determination. So we can be the agent’s of our lives and still have health. And, and, and that sort of setting have Berkeley 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 attendance and all of that. And that center for independent living became the independent living movement. And those centers are now replicated all over the United States.

Sara Hendren (14m 15s):
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, and again, centers for independent living are these storefronts that people have probably driven by and 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 wake on us to those histories.

Jeff Wood (14m 42s):
And it leads also to the discussion you have about Steve and with an ALS and his sailing house, she had designed its an amazing discussion about how you can live with assistance, but also design for your own kind of independence as well.

Sara Hendren (14m 56s):
All right. So Steve sailing comes at the end of this chapter that we can meet at Robertson and the cold room. So it’s this chapter about thinking about the room as the site of making a life worth living and rethinking independence and thinking about richly about dwelling, like all the stuff that we do and our interiors, but Steve sailing is now 14 years into an ALS diagnosis. And when he got his diagnosis, 14 years ago, he was trained as a landscape architect. So he was trained to think in terms of design and like anyone started watching of course, pharmacology and research in science for a cure. I would want a cure, but understood also that he might design a life worth living as his mobility diminished. And his mobility is quite diminished.

Sara Hendren (15m 37s):
Now he uses just a small Head movements in his eyes as his only mobility. But what he orchestrated for himself is a resident’s that he could live in with that rich idea of independence and mined and the legacy of Roberts and others. So what that looks like in terms of technology is that he’s got a cursor that’s mounted on the nose bridge of his eyeglasses that talks to a, a wheelchair, a mounted tablet that will open and close all the doors open and some in all the elevators and the resident’s, this is on a floor of a, of a nursing home in Boston. It we’ll also turn off and on the Media in music, it will, you have to run the HVAC in his room. It will, you know, do all kinds of automated. What would we would think now of as smart home technologies, but it’s a closed loop system that he orchestrated before those technologies came to the market.

Sara Hendren (16m 24s):
And by the way, they are utterly private and free from the, you know, the deal that we’ve made in smart home technologies to sell our data and so on.

Jeff Wood (16m 32s):
That’s another topic of conversation.

Sara Hendren (16m 35s):
So Steve has said repeatedly that in the absence of medicine technology is the cure. He would say for ALS. And I try to sketch in the book, both what that means to hold both things, to be true, right. That he would rejoice tomorrow and being cured of ALS, but he also built a life worth living, you know, with technology, but also with care. And there again, the legacy of Roberts and others is really vivid when we say if for any of us, Right when, and if our bodies change, what’s the life that we’d want to build, right. And would it be a life free of help in it? Maybe not, maybe a life worth living already includes help.

Sara Hendren (17m 16s):
And you know, the, the kind that we don’t acknowledge if we’re non-disabled people at the moment, but also that help might be creatively reconsidered, you know? And so Steve lives in this beautiful home that looks like a home that is painted in a warm organic colors and looked like a living room, nothing like the cold or clinical setting have a hospital. It is impressively design with technology. And it also is a site of human care and he’s very busy and fundraising and doing all kinds of things all the time. And I think it challenges a lot of folks idea of their own independence. Honestly, I think ALS is a hard diagnosis and it also is a portal to understanding some really deep wisdom that disabled people who’ve known for a long time

Jeff Wood (18m 1s):
In that realm. There’s the technology discussion, right? And when I was reading your book, I thought about it on my back porch, there is a lot of plants and we net them because there is squirrels and crows and things. And the other day I came up and there was a pebble from the backyard sitting on the back porch. And the only way that I could get up there, it was by a CRO and the CRO using a tool. And it just made me think of that when I was reading your book, because often we think about technology is something in the future, but rather it’s something that AIDS us in. What we’re trying to do is as humans even. And I found that fascinating.

Sara Hendren (18m 30s):
Yeah, it’s so true. And we get to that discussion because of an interesting thing in my field Right, which is just the specializing of technologies for disability as being labeled assistive technologies. Right. And I use that term as a shorthand in the field, but it’s a really telling redundancy Right as though all technology’s, what are they doing if not assisting, they are assisting fundamentally. And so I try to take that kind of, you know, new eyes as strange look at what it means to be a body at all. And I think there’s a reason why we locate tool use as a key moment and developing human civilizations is not the only one sociality is equally as important for sure. But tool use nonetheless is how we just make an abstract plan in our minds and get something done.

Sara Hendren (19m 13s):
It’s how we would have hunted and gathered in the past and build fire in those things. And it’s how we write outsource our brain power and lots of ways to smartphones now to free up our mind, to do other kinds of human tasks. And so what, what do we gain by looking at this a new, you know, for me, it’s this kind of wonder that maybe the extended Body with stuff and I’m talking about the pencil chopsticks, you know, but also hearing AIDS and eyeglasses, maybe the extended body is the natural state of the body. Maybe that is what it means Right to never to be not extended. And if we see it that way, then we see all of ourselves as getting assistance from our assistive tools. And that means we live on the planet where people need help.

Sara Hendren (19m 54s):
And if everybody needs help, right, then there’s a kind of continuum that it doesn’t make us all the same by any means, right. Where we are different across multiple axes. But nonetheless, if we see that connection, then we stop maybe thinking in such patronizing terms about people with disabilities or in sort of pitying terms about folks who are living with less mobility or mathematical intelligence than others. And we may be, we think of ourselves as a slightly more human, you know, as a result.

Jeff Wood (20m 22s):
And that kind of goes to the normalization discussion, how we decided to create norms. And it’s interesting to think about why we do things like compare ourselves to X percent of other people and those types of things.

Sara Hendren (20m 36s):
Yeah. The fortification of normalcy with desirability, right? So in the normal I’d do it the most kind of cursory history. This is a long and complicated history, but the way that normal became the sort of the science of statistics and averages became not just a way to measure one another, but also a way to grade and rank. And hierarchize one another. So folks might know that normalcy in this population sense is just an inheritance of the social sciences that was, you know, early 19th century phenomenon. So it hasn’t been with us forever. And of course the social sciences are really useful to us for understanding each other at population scale, we want to understand groups and how they behave, but the legacy that sort of a pernicious kind of shaping of the meaning of normal over the course of the 19th century and at its peak.

Sara Hendren (21m 24s):
And the eugenics moment of the early 20th century is a conflation of normalcy with what is good and even the enhancement and the pursuit of normalcy. And so Right meaning just the idea that humans can be graded in their physical qualities, but also their moral and intellectual qualities. And when you wear that with a kind of a nationalist Ferber, late 19th century, early 20th century of improving nations as a whole, then you get this kind of eugenics wish to weed out or undesirables Right and to promote the so-called desirable norm. And, you know, folks may be even think that, right. We, we can probably agree that the ugliest eugenics violence is behind us.

Sara Hendren (22m 5s):
And yet the long legacy of that, it’s a non-linear one, but the long legacy of that is still with us in the sense that if you go to the pediatrician’s office with your child, they are graded right on percentiles, the way they are spoken about overwhelmingly And and in high stakes testing. And so on is about where they fall percentile wise, compared to their peers. Again, it’s useful on some scales, but it, it has a way of creeping into our evaluative in descriptive language about each other in general, how we measure up compared to others and whether we are ahead of the curve or not, and whether our child’s can compete and so on. And so it frames life as a race and a kind of curve of gradations and achievements that I don’t think any of us want to be held under sway and under that’s the way I think, I think we want our lives actually to have dignity on other grounds.

Sara Hendren (22m 56s):
You know, full-stop so normalcy, is this kind of in the water perniciousness? I mean, frankly, we have seen some eugenic logic in the rationing of ventilators and all that speculative discussion that happened this year around COVID-19 it was pretty clear actually that folks were making calculuses in their heads about whose lives are worth living or not, and who had a quality of life and so on. And so it is at the door. I think that same kind of grading of one another. And I can say to you quite strongly that I think each of us wants to establish a kind of dignity of human life. And of course, that does beg for first principles and other kinds of grounds, you know, like how do we know where it is a human life, or if it gets pretty deep and philosophical pretty quickly, right?

Sara Hendren (23m 41s):
Yep.

Jeff Wood (23m 42s):
Are you talking about language framing? And I think this book has an amazing at how the world’s view of disability is framed, especially the social versus the medical models of disability. You know, it, it’s hard to get people to rethink some of these ingrained inertia. And I think this is kind of something you are intimating, but you know, there is this ingrained inertia around that topic. I’m wondering how people can get away from that initial inertia that they feel because it’s been ingrained in people in ways of how to think about this topic and about disability as a medical disability. Yeah.

Sara Hendren (24m 10s):
Yeah. It is funny because So, people will see throughout my book, it is a, it is a whole repository have decades of wisdom and riding of Disabled people articulating this as a difference between a medical and a social model. And yet we still do need to be having this conversation. You’re right. So I tried to in the book, try to translate it to very layperson’s terms in order to try to make that connection, just to add a voice to what has been a really strong intellectual tradition in disability studies. So just to orient people very broadly, this was, I’m just going to make a sort of crude binary here, but, but in this scholarship about disability, we can understand a medical model of disability as one that many people I think now take for granted the idea that a disability is something that is purely biological.

Sara Hendren (24m 54s):
It happens to you, your legs work, or don’t in whatever kinds of ways. Maybe you have what you talk about as an impairment or what it would have been called a handicap some decades ago. And you think of disability is something that maybe you are proud of, or maybe you struggle with it, but in a medical purely medical model, it is something that is purely biological and it lives on your body. And therefore it’s your responsibility in a social model of disability. You just widen the aperture of the lens a little bit to include not just the body, but the interactions with stuff around it. So I’m in a social model of disability. Yes, of course people have biological facts about their bodies, but the actual disabling may not be actually on the physical side of the body itself.

Sara Hendren (25m 36s):
In other words, the best example is to say my friends who use wheelchairs would say they are not disabled by the fact that their legs don’t emulate, they are Disabled by a World Full of Stairs. So what that means is actually that the disabling interaction is what’s happening between the body and stuff between me and this desk and me in this chair and me in holding this bottle water or not. And so what you get that it’s just a vastly rich or set of questions, which are for anybody in transportation, on planning, it should be really imaginative in, exciting to think about, which is to say, are we trying in any given use case to help bodies come to the world a little more easily? Or are there moments where, and history shows there are where the world might come actually to bodys a little bit more?

Sara Hendren (26m 20s):
Right. So think about the kneeling BAS and to think about, again, curb cuts and think about retrofitted elevators and think about the use of handrails and think about brail on outside of elevators and so on ways to manipulate the physicality of the world so that it actually does the Alasta sizing work and the adaptation. And so a social model of disability, just to invite you to see what Rosemary Garland Thompson calls a misfit that is the condition of disability. And she says it is being around peg and a square hole. Well, where’s the So quote problem ly between a round peg and a square hole. And it runs both ways. Right runs this way and back, and that’s what’s happening in disability, which again, just gives us bigger and better questions as we proceed through the world, where is the locus of the challenge and where then might the interventions be for designers and engineers and that’s, to me, it was just an endlessly.

Sara Hendren (27m 14s):
Fascinating. So it’s a set of questions again, in the field, of course, this is like way more complicated and you know, a whole realm of scholarship, but just that simple reversal, I find still holds a lot of power for designers and engineers.

Jeff Wood (27m 26s):
We’re having this a little bit of a reckoning now with public participation because of some of the slow streets stuff that’s been happening. And especially here in Oakland, there’s been a lot of discussions about You quote unquote planners. Didn’t ask us whether we wanted this or not. And I’m wondering how that kind of frame comes to the disability community to, I mean, in terms of rethinking public participation in along those lines as well.

Sara Hendren (27m 46s):
Yeah. I mean, I think it’s been interesting to watch the shared streets are a slow streets initiatives. And I know in my own city in Cambridge, we have, I mean, it’s right outside my house. I’ve watched this happen. There were a lot of community webinars and things that for weeks and weeks before any of the physicality was implemented and the speed limits and such to try to get that feedback. So that’s just a good human centered design stuff. And I don’t know what your process was there. And we all know of situations where there were gestures at community engagement that were actually, you know, maybe not widespread enough or not, you know, like sort of depended on a certain kind of connectivity that not everyone has, but there are more specific kinds of things with a disability community around a feature of shared Street’s that includes for instance, storefronts in restaurants, expanding onto the sidewalk.

Sara Hendren (28m 30s):
So I know in Boston, the mayor’s office was way out ahead of this and they offer to send a kind of a temporary ramp kit or to any restaurant that wanted it, so that right, if they were going to extend into the parking spaces on the street, they would have a ramp down from the sidewalk. But even then I know that you’ve gotten some, some widths in a wheelchair passage problems, cutting through sidewalks and so on. But I do think it is interesting to think about shared or slow streets in general, sort of leaving aside the threshold with businesses situation, which I do think is an important one. And then I think about my own son Graham and the way he weighs risk and kind of depth perception and so on to cross a busy street, that’s been really useful for us, for him to think about him going across the busy street to the park or whatever.

Sara Hendren (29m 19s):
Like just knowing that the average speed is slowing down, that slowness is actually making for a, a safer overall environment. So it all just depends. I mean, it seems to me share it. And so those streets should be the epitome of the prototype, right? You start small, you pilot, small programs, you gather a lot of data, you’d get a lot of feedback. You know, we have sandwich boards that acting as physical barriers to slow cars down, but they’re not permanent bollards yet right there. So there’s this very particular way that you roll things out so that you can favor reversability Right, you can take notes on things that you hadn’t planned for that kind of thing.

Jeff Wood (29m 57s):
Yeah. There’s lot of discussion about technology that was developed because of war and also the idea of prosthetics coming from this time and in history when people were losing limbs, but still surviving. Even recently, I saw, you know, Alex Smith of the Washington football team almost lost his leg, broke it up, he had sepsis and almost died and they were able to fix it because of the technology that developed in Afghanistan. Well, and I’m wondering kind of how we square that kind of development of technology that can help people vs. Where it came from.

Sara Hendren (30m 27s):
Yeah. I mean, this is one of the deep ironies of engineering in general, I think, right. It’s almost like impossible to disentangle from the war machine. And certainly that’s true and what’s called rehabilitation engineering, which is, again, it’s, it’s a post-World war II phenomenon that rehab engineering came to be a national priority with all kinds of NSF funds toward it. And you know, just the feeling that it is of obligation toward folks, who’ve made big sacrifices for their country in the form of technology and technology. That doesn’t the promise of it. And the persuasive story around it is meant to sort a restore function, but also to restore the sense of self and identity.

Sara Hendren (31m 7s):
And so in the book I referenced as a historian named David cirlan, who talks about how prosthetics we’re really nothing less than meant to be a replaceable. You, he says, you know, like that, in other words, there’s a powerful story of persuasion coming back from the war, missing a leg or missing an arm. And that there was a powerful incentive, not just for those men who were coming back, but for everyone else, seeing those men and the story of that victory to have been restored and the form of prosthetics. So that made a lot of people feel like there have been some, you know, recompense. So that’s a story that we can carry and be grateful for. In other words, the deep irony that the war machine that kills and maims with technology enhanced by technology also then drives the kind of a curative healing technology for coming back and surviving.

Sara Hendren (31m 58s):
And that Right prosthetic limbs are offered to people who perhaps in a prior centuries would not have come back from the field, right. They would have bled out there, but because they’re surviving those combat situations and returning home, they get prosthetic parts. And you know, it’s true in terms of landmines to, I mean, there’s just, we travel and the Lim chapter to see the giant four foot organization. One of those outposts in Ahmedabad in India, where I visited and those folks there in India are building and designing a low-tech lower limb prosthesis that they’ve perfected over the years and evolved with like really sturdy materials suitable for lots of kinds of environments manufacturable for about dollars, the piece and distributed for free and as a quite robust and remarkable program.

Sara Hendren (32m 46s):
When you think about innovation or impact, a lot of times rich countries of the world, certainly like the us people tend to think like only the best that money can buy is the sort of best that’s owed to people in the condition of injury. But there are all kinds of ways to think about impact. But again, the Jaipur foot organization is partly providing those limbs to folks who have been entered in landmines. I mean, there’s just no way to disentangle. That’s why anthropologists call this stuff in our lives material culture, right? Because it is an index of cites of flows that are political and historical and technological all bound up together. So do each of us also benefit from war machine technologies?

Sara Hendren (33m 27s):
I’m sure we do write every day. And this was one of those conundrums of being a human in the world.

Jeff Wood (33m 34s):
You mentioned you’ve been to a lot of places. I’m wondering if I know it’s hard to pick favorites, but it, was there a place that you really enjoyed or, you know, made you think more than some of the others?

Sara Hendren (33m 43s):
Yeah. I mean, I will say that I think all the time about the dementia village that folks would probably on your podcast will have heard about it because it’s gotten quite a lot of press, but in vase in the Netherlands, it’s called . So people know it as the dementia village, meaning that it’s a locked facility, a nursing home that is also the simulacrum of the street. And so it has in it brick streets on what you can bike and also a grocery store and a barber shop and a gym and the theater and all kinds of things that are real in their operations. But there are also, again its a nursing home and a high security one at that. But the thing that really stood out to me that stays with me is the restaurant that’s on that campus because it actually has a poorest structure.

Sara Hendren (34m 29s):
So it is partly internally facing for the residents who lived there and partly externally facing. So you can be a resident of the Town and go have lunch there. And there were people there the day that I visited just having a business lunch and there were folks residents who were wandering in who were clearly wandering and were clearly a little bit confused, but there was like a mother also from the town with her young children in these folks having a business lunch. And there was this very humane exchange among all these people. And in fact, the mother sort of modeling that humane exchange for our children and that mother was going to exit out the door. Right? And so we’re the business lunch folks and those residents we’re going to go back in. But the idea of a porousness of that architecture is so compelling to me because here are these folks in this condition from which they will not recover probably.

Sara Hendren (35m 19s):
So their lives are mostly locked away. Security has to be paramount. And yet here it was a way architecturally to keep up some kind of continuity of their life in a public way. And I just thought the, the attention to that kind of detail and the, again, the humaneness of it was so ingenious and not hard to replicate, you know? And so the word has always attentive to me and the idea that with some thoughtfulness you could plan, you know, and it doesn’t always have to be this really expensive measure. It’s a measure of Policy and norm setting, what we’d call service design right in the field of design and engineering. So I think all the time about the dementia village,

Jeff Wood (36m 1s):
I think the most interesting thing about that piece to me was first that the people that designed it decided that the place that they were Head created initially was not one where they would put their own parents. They decided they were like, I don’t want my parent’s to be in this place. This is sterile environment. And the second is kind of a funny, and I don’t think it was targeted at you, but the quote, the Americans are always amazed. That was another one because you don’t know what it is that, you know, I guess maybe when you go to the Netherlands, you’re generally amazed in. And especially if you’re a planner and you go there, my parents lived in, in Rotterdam for a year and I was amazed when I went to visit back in, I think it was 2000 or so, but that quote stuck out to me. I don’t know if it, it stuck out to you as well.

Sara Hendren (36m 39s):
Well, it’s so true. It will. So just to orient your readers again, so to have to work in this famous dementia village that has visitors every day twenty-five years ago, was this site have a very rough in the middle of a memory care facility in that probably are thinking of right now, like a lot of the building with a long Bay of rooms and so on. And so they just rebuilt on that very site. And as you say, the key difference and it’s like, it’s the simplest and most profoundly in the world is to look at the status quo and go like, Hm, is this acceptable? When it comes to, to me, you know, to me in my own family or is this the exceptable, you know, just great it’s regrettable, but it cannot be helped. And the people who decide right, that the status quo is not acceptable and they are going to build something else.

Sara Hendren (37m 21s):
I mean, I’ve never get over how magical that is because it should be quite ordinary, you know, but it takes commitment and all kinds of red tape and so on. And they were able to rebuild this place where you’d want to be, trust me, where are you to have dementia? But right. So you’re referring to the scene where I go into one of the dwellings and people do live in these dwellings of six or seven folks, a piece and they have a working kitchen in there and they have caregivers there who helped the residents who are able to cook meals. I go to the grocery store and plan and cook meals together and all of that as part of patching together as a continuous daily life that has, you know, by memory and association in spatial relationships, it ties them right to their past in a way that’s reassuring.

Sara Hendren (38m 3s):
And it means they don’t have to depend on medication as much to quell their anxiety and so on. Anyway, so in the kitchen, like you open the drawers and there are, you know, there are sharp knives there for preparing meals. And I forget, I must’ve said something like, Oh, you know, like you, so they can handle the knives in whatever. And the guide said to me, yes, they can, to us it’s worth the risk. And she said, the Americans are always amazed. Meaning of course Right that, that are in a litigious culture. Safety is paramount in a good way, but that also means that risk tolerance is at rock bottom And sometimes at the expense of any quality of life. Right. And I do think that a lot of times the fear principle when applied to a very old folks and two very young children design’s out of their lives or some of the acceptable resilience risk, right?

Sara Hendren (38m 52s):
I mean, this is a whole realm of scholarship in and of itself. Right. I realize how controversial it can be, but boy, she made the point, did, you know, kind of remark that and you do have to ask yourself, what’s the life that you would want to live at that moment, you know, to be hermetically sealed from any possible harm and for what, where are your pleasures then? Right? Where are your pleasure is where’s the meaning? Where is the purpose? Where is the connection? That’s what we know makes our lives worth living. So we’d need to ask ourselves when thinking about our own parents and then thinking about our own aging bodies, what’s the kind of risk and reward we’d want a design. You know,

Jeff Wood (39m 27s):
It’s interesting to me it’s specifically because my grandmother, it was a 107 and just about two years ago, she finally accepted having people live with her all the time, but she has been blind since the 1990s, basically. I don’t think she could go anywhere else without being comfortable. And so it’s like one of those decisions you make and she, you know, she didn’t want to, but after she broke, she broke her ankle and then came back from it at a 105, which is amazing a 149 to five. But you know, it’s one of those things in those comments, you know, it struck me just because of that specifically, Yeah living with How right. You also discuss time and you know, a time for me, it has been annoying. I’m kinda one of those, I think a phase shift type of people who is a better off at night rather than during the day.

Jeff Wood (40m 9s):
And I hate the morning. It’s like my least favorite thing in the world. When I stopped working at my day job. And I started to sleeping with my own schedule, I started feeling better, but like generally, does the clock bother you as well

Sara Hendren (40m 20s):
On the clock does bother me. And I guarantee you, it bothers your listeners. Know what I mean? We are habituated to it, but yeah, so the clock is the only object and the book that is a purely conceptual object. So I’m not really thinking about clocks as a assistive technology, literally. Although of course they are that, but more of a much more as the timekeepers of our lives. And this was my way of trying to account for design for slowness. And that kind of misfitting. So, so far in the book, we’ve talked more about, you know, deafness, blindness, mobility issues, wheelchair use and so on, but there is something that’s more challenging for design. And that is when the misfit is about developmental, you know, constant States of, of misfitting.

Sara Hendren (41m 3s):
So I’m thinking in particular of my son, Graham, who has down syndrome and thinking about design for developmental disability, which I have not taken up in the lab or in the studio, right. Because it’s, it is a conundrum. And I wanted to see like, what is the design here? So that chapter opens with a seen in Singapore looking at this incredible Planning decision there of what’s called a green man plus program. So the green man just refers to that, you know, walking figure that is on the pedestrian. Callbox that lets you be, you know, it tells you to go across the street as a pedestrian. And in Singapore, the green men plus program is your Metro card. If you’re a senior citizen or disabled person, you can get your card outfitted with a censor that will actually buy you extra seconds in the crosswalk.

Sara Hendren (41m 46s):
So it will extend that any given cross walk by 12 and 13 seconds, and then it will revert to its normative time schedule. And this to me is just like a genius kind of intervention. Again, probably not new to folks who are listening to you, but to me, that’s a kind of design for slowness that is instructive an instructive impart as a solution, but also instructive as an insight about how slowness arrives for a lot of us in different moments of our lives and for my son Graham and for folks with developmental disabilities, it’s the misfit of not proceeding through, for instance, K to 12 education and therefore the economic 40 hour a week sort of work productive citizen gradation of being a human. That is the place from which a lot of us derived our human worth.

Sara Hendren (42m 30s):
That is our capacity to quickly navigate through, to be on time and on the clock in the high percentiles of the testing and grades and so on again to what, to go to college, to compete yes, to pay our bills, but also to establish that we are worthy, you know, in the eyes of the economic order, the market economy mapped on to all parts of our lives, right? So you can be saying, what about market economies? You can be a realist about needing to be a working person to pay your bills. And also you can question whether that clock should measure all the ways that you are seeing in the world, how you’re evaluated the quality of your relationships, the transactional nature of all your exchanges and so on.

Sara Hendren (43m 12s):
And it’s been parenting as a kid who is profoundly misfits in that way, that has shown me and invited me to have a much deeper and richer exploration of how the clock actually comes for all of us write that. And so I traced in, there are a little bit of the history of, you know, daylight saving time and the is the order of this sort of standardization of time, which again, we think of as quite eternal, but it’s not its only a few centuries old and it’s really a product of industry making industry is sort of maximally convenient for all of us. Like the expansion of the railroads. Yes. It in a realist way, it works well for our lives right now that we agree what time it is in Boston versus in Oakland.

Sara Hendren (43m 52s):
But the cloche as a kind of a monolith, this kind of exacting metric for how we’re going to decide who’s worthy and who’s not who has a good life and who doesn’t, I mean, down-syndrome is rendered, you know, it’s not a disease itself, it’s a genetic mutation, you know, but non-normative intelligence is spoken about as a disease, you know, and how telling that is that the slowness of Graham’s particular kind is so undesirable. And so un-normal as to be thought of as a real sickness, you know, as opposed to another way of being in the world in other way of being with dignity about it. So that was me trying to engage with the reader to show, not Just the misfitting that arrives for people with developmental disabilities.

Sara Hendren (44m 35s):
And by the way, there are some service design and there are oriented around developmental disability, but also to look at ourselves and ask which kinds of measures of the clock are maybe inhibiting a lot of us and a lot of ways.

Jeff Wood (44m 50s):
So this is my last question. Is there a question about the book that you, you wish you were asked more than a second?

Sara Hendren (44m 54s):
A really good question. I mean, I am so eager for people to engage with the ideas that are beneath the design, you know, so in so many ways I’m eager for people to be excited about the design itself. And I spent so much time describing it and trying to evoke its qualities, sensory of material qualities, but really I am so eager to talk about ideas of adaptation ideas, about independence, ideas, about assistance and ideas about time that it’s like all the design is a signpost, you know, to something else that’s going on. And I am eager for people to ask the biggest questions, which is like, how can a person be?

Sara Hendren (45m 38s):
You know, what is it like that Wendell Berry books? What are people for, you know, like that’s, to me, the real juggler that disability ultimately goes out, you know, that it knocks in our individualism and that’s a kind of a prized first principles state that I want more people to ask themselves about.

Jeff Wood (45m 55s):
Well, the book is what kind of Body do How We Meet the Built World by Sarah Hendren where can folks find the book if they want to pick one up

Sara Hendren (46m 3s):
Or they can find it on bookshop? For sure. The penguin random house site has a page for the book. That’s got a bunch of buttons for including bookshop, which is also, I think the site of indie bound a do help. People will support their local independence in a pandemic. So yeah, lots of places.

Jeff Wood (46m 18s):
Awesome. And where can folks find you if you, if you want to be found that is, yeah,

Sara Hendren (46m 23s):
I’d love to connect Sara hendren.com is my website and they have a contact form there, happy to connect to their, and my Twitter handle is ableism a B L E R I S S E.

Jeff Wood (46m 34s):
Awesome. Well, there’s so much more in the book. I hope folks go pick it up. There’s a lot of stuff about deaf space and, and more that we just didn’t get a chance to chat about. I feel like I could chat with you about this stuff all day, but I hope folks go and read it and check it out and have some good questions for you. Thank you so much. Sara for joining us.

Sara Hendren: Thank you Jeff I really appreciate it.