createCanvas Season 2: Interview with Sara Hendren
createCanvas is Processing Foundation’s education podcast, which focuses on teaching at the intersection of art, science, and technology. It’s hosted by Saber Khan, our Education Community Director, and is part of our Education Portal, a collection of free education materials that can be used to teach our software in a variety of classroom settings. Rather than endorse a specific curriculum, we’ve engaged with a variety of educators from our community, ranging from K12 teachers, to folks who lead workshops at hackerspaces, to university professors in interdisciplinary departments. We’ve asked them to share their teaching materials, which anyone can use.
createCanvas features monthly interviews with these innovative educators, so you can get to know their practices and what they bring to the classroom and why. Check out the transcripts of past episodes here.
This episode can be found on SoundCloud here. Below is the transcript (lightly edited for clarity).
Saber Khan: Hi everyone! [intro is same as above]
Today I’m here with Sara Hendren. She’s an artist, design researcher, writer, professor at Olin College of Engineering. She’s the author of What Can a Body Do? How We Meet the Built World, published by Penguin Random House on August 18, 2020. Sara, thanks for joining us.
Sara Hendren: Thanks for having me. It’s good to be here.
SK: One thing I wanted to start with you is part of this work that you’re doing involves thinking about design differently and responding to different needs. I wonder if you could talk about why we often focus on certain areas and perhaps not other areas? Is there a way to make sure we’re looking at design and innovation broadly, so it isn’t just focused on people who are at the center of the built world?
SH: There are a couple ways to think about that. One is that a lot of times, perhaps, because people think in terms of mass manufacturing, they think, “Well, the only things that matter are the things that will matter at a numerical scale.” And so then maybe they turn their attention on the middling mainstream and think of that place as a place to make, quote, unquote, “impact.” In the history of design, human-centered design, of course, there has actually been a whole tradition of looking, not at the middling mainstream, but actually looking at the so-called margins of experience, precisely because there’s often insight in the margins that tells us something deep about being human that often is to the benefit of many people.
So, in that tradition specifically, in my research area, in disability, often people think of this as a universal design. To tell a couple of the famous stories in this that people may or may not know, the OXO Good Grips, those kitchen tools that have that chunky rubber handle on your vegetable peeler, perhaps, or your can opener, that ergonomic handle — and it’s really quite elegantly done, the way the grip and squeeze of that, and there are these little fins etched on the side that tell you right where to put your thumb and where to press down — and those were actually designed from an insight gained from the condition of arthritis.
Betsey Farber, who was on vacation with her husband, Sam Farber, was in a rental house somewhere in Europe, and was sort of complaining about the old-school vegetable peelers, like, “Why can’t I use this? Shouldn’t there be a better mousetrap in the form of this kitchen tool?” And Liz Jackson actually told the story in the New York Times opinion section — it’s great little vignette about how that happened — and Sam Farber, her husband was a retired entrepreneur, and came out of retirement, and they worked together with smart design to overhaul kitchen tools as we know them. So now, since those three decades ago, or whenever it was, The Good Grips line has become a more ergonomic kitchen tool that’s more comfortable, actually, for everyone. Most people who use them, it’s been a sensation. And that’s a tool that does scale in mass manufacturing, in that industrial sense. In other words, you can make its parts efficiently in a factory, and therefore, they arrive at the big-box store for under $10. And that’s the kind of thing that you want to work at that kind of scale.
Curb cuts is another one in the built environment: the ramp that is now cut into the curb at the corner where the sidewalk meets the street, and then back up again. Curb cuts were won by legal mandate of the Americans with Disabilities Act of 1990, not that long ago. People point to curb cuts as a universal design because it was argued for in the interest of wheelchair users to have free passage to the built environment. But of course, if you wheel luggage through the built environment, if you push a stroller, or a big double stroller like I did for years, through the built environment, if you are temporarily on crutches, wheeling a bike through the city streets, you also participate in those politics in a way that people think of as universalizing, right?
A lot of times people think that that’s the whole story of design and disability, that it’s a universal design, and that’s the only place that we should be looking, that only things matter where there’s insight in disability that can affect all of us. But of course, the Americans with Disabilities Act was an anti-discrimination law because it named the idea that not only is discrimination based on not giving people chances, because they’re thought to be less able, but also that the very built environment itself has discriminatory features in it.
If you cannot get down the street, if you can’t get onto the sidewalk into the building, you cannot be then in the public sphere, you cannot get to the transportation, to your workplace, to the voting booth, right? So that’s really interesting when you think about it, that discrimination may be built in then to the built environment.
SH: So it’s not just, in other words, the responsibility of people working in the logic of markets and industry in scaled manufacturing, it’s also meant to be a legal guarantee. People who are designers can think in a civic way about, “What is the right thing to do?” Well, if you want to build a democracy, you need to make it work for everyone. Some of those things arrive to us in the form of markets at the big-box store. Some of them are the work of laboratories and classrooms, at engineering schools. Some of them are the work of urban planners working at the behest of cities and municipalities. There are lots of roles for design to take a look at the margins of experience, including the bodiedness of our own lives, and to think about how to make the built world do a little bit more flexing and bending and elasticizing its own structures to make it friendlier for us.
I think a lot of people listening will have plenty of experience, turning their own bodies into a pretzel to try to meet the built world, to try to make it work in this chair on the bus, to try to sidle up to somebody and grab a scrap of pole in the subway. We all turn ourselves into adaptive creatures in the built environment. But history shows that the built environment can also move a little toward us, too. Each of us, no matter our body, what we learn when we look at these lessons in all their places is to say, okay, when and if my body changes — and we know that it does, we know that bodies come with needs, right, full stop — then what is the next right question that I’ll ask? Will I bring my body to the world and adapt in this way?
I tell lots of stories of people who do that in the book. But also, can I ask the built environment to move toward me? And what are the resources I would draw on to do so?
SK: Sounds like there might be quite a bit of a journey to do, especially at engineering school to think about this stuff. What’s it like for someone new to these ideas entering your class?
SH: That is such a great question. Because, of course, people listening will not be surprised to hear that engineers are really quite eager to dive into what’s been known as rehabilitation engineering. That’s a World War Two phenomenon of the realm of prosthetics and big government funds and DARPA research and so on, toward prosthetic limbs. This is a real draw for engineers, they go into engineering, because it’s not bench science, it is applied technology, it’s where technology meets people. It’s not hard to get people interested in the idea of, for instance, replacement parts in the form of prosthetic limbs, or in better software for text-to-speech for blind readers of their email or something. My students tend to come to me with that very eagerness.
But the role then for me is to actually do a very subtle thing, which is to say, “Okay, young person, take all of that energy and that will to be on the helper end, right, the helper end that provides the technology, take that, but dial back a little bit to your own experience, and actually locate your own body in your own experience in the receiving of help as well.” Right? For me, that’s critical. In other words, to try to say to students what disabled people have said for a long time, which is that all technology is assistive technology, that is to say, “What is technology doing if not giving us help?”
It’s a redundancy to say, “Over here in rehab engineering, we’re going to make this special kind of technology which is assistive in nature.” Right? As though it’s for a special subset of people who are not fully human, that they are kind of subset who actually need the help. No, no, take a look at your smartphone, the utensils with which you ate your lunch, the glasses or the contacts that you wear every day, the orthotic shoe on one side that’s helping you with a more comfortable gait — and call that all technology, find yourself in that big plane of existence, which is just an extended body with stuff that has needs.
That, to me, is a very productive place to start building stuff together, because it means that my students don’t get that kind of heroic tech savior complex, that, “Oh, I’m on the bestowing end of this thing that’s going to rescue this poor person’s body.” Right? We dial way back from that and say, “No, this is the most fascinating human experience possible.” What is the great humanist refrain? In the humanities where I come from, one of the great humanist refrains is, “Nothing human is alien to me.” In other words, the insight is to say, “Any human experience I can find some recognition in, I can do the perceptive work to see myself in it, to see my connection to it.” Okay, now we’re getting to some good questions.
When Amanda, who is a little person who has a form of dwarfism, came to my classroom asking for a lectern at her scale, you can imagine how the lecterns of the world are not to her scale. Or when my friend Alice Shepard came to my classroom, a wheelchair dancer who wanted a ramp, not for getting into a building, but a ramp for stage, that’s just rearranging all our categories at once, right? What is the engineering, and who is the engineer, and who’s getting and receiving the help, and what is the kind of help that’s being asked for? To me, there’s nothing better than that encounter in the classroom. But it’s not a kind of bleeding heart, engineers-to-save-lives kind of deal.
SK: Yeah, there’s a part of being human and humble there. I wondered, it also must impact their identity, some folks find it easy to sort of connect through their own feelings of marginalization, or having to bend, and [there are] folks just haven’t practiced that muscle. I wonder if, even if they have been marginalized, they just have not had the language to think about it, or put it to words. Do you do things there in those moments to help them find themselves? I’m sure, often when they meet a disabled person, the differences have become very clear and stark. How do they draw connections back in?
SH: Yeah, one of the best things that I’ve done in the classroom, which was the idea of Alex Truesdell, who’s the now-retired head of the Adaptive Design Association in New York City, which is a storefront in Manhattan and appears in the “Chair” chapter in my book. So the Adaptive Design Association builds radically bespoke customized furniture, mostly out of triple-wall cardboard, and other low-tech tools and materials, for kids with disabilities all over New York City. And it’s a fascinating, absolutely ingenious practice. We can talk more about that if you’d like to, but Alex came to my classroom and introduced my students to triple-wall cardboard, to its incredibly robust qualities, to reframing their idea of what high tech and low tech really is. But the thing that she launched in my classroom that then I repeated several times after, was to actually have the students go back to their dorm rooms or their workspaces, and think, “What’s a fitting, what’s an adaptation that I can build out of cardboard, or some similarly modest material, that actually would bridge a misfit between my own body and the world?”
So people who don’t think of themselves as disabled — of course, I have students with disabilities and accommodations of various kinds, but a lot of them are invisible disabilities — but I had students who, for instance, were quite a bit shorter than average, they were not little people or have dwarfism, but they were quite a bit shorter than the average desk, for instance, is scaled for. So I had a student who built for the exercise ball that she would sit on, instead of a regular chair, and she built a cardboard stand that raised it up even more. Now she was able to meet the scale of the desk at a more comfortable stature. Could she have made it through the year without it? She could. But that moment, right, where she went and built something for herself was the moment for her to turn her attention to her own body and to the universality of misfitting.
And so that puts her in a much better frame of mind to then turn her attention to somebody else, for instance, Amanda, or that same student, Grace was her name, who built the exercise ball stand, went on to work with a man named Chris with one arm on an extension for rock climbing. But she had a much better sense that she was involved in these human stakes too. And that’s the moment where discovery can really happen, where we see our own lives and those connections, and then we see the strangeness, perhaps of disability, as a little bit less strange. And as both as an urgent matter, politically, but also a creative matter to say, “Whoa, here’s this person doing…” All of us are doing this incredible adapting to the world all the time. Where can we watch it happen? And slow down the tape and say, “What’s the role for the tool or the technique and where it might find its good life?”
SK: Yeah, I think about that — I’m from Bangladesh — and I think about the innovation that people at the margins have to practice to get by, and how we often don’t pay attention to those things. Does suffering sort of become a virtue in some places? And do you think about that it as a design thing of, I’m trying to phrase this correctly, but often people are very innovative when they’re dealing with oppression, basically something that really just — they’re sort of gracefully, and intellectually, and physically overcoming it, but in reality it’s still a problem. And in one sense, design might fix that moment. But ultimately, as you alluded to, with the ADA, it’s a political thing. Is there a part where your students are ready for that jump, or is that part of your classes in thinking about them?
SH: Yeah. Well, you’ve said so much there. I mean, one is we look, for instance, at the Jaipur Foot, that’s a phenomenon of multiple cities in India originated in Jaipur, and the Jaipur Foot for people who don’t know, is a lower-limb prosthesis that’s made in a super elegant way out of high-performance plastics and made for about $50 per limb, but distributed for free. I do try to show students the socio- and political context into which the Jaipur Foot enters, and how many folks from rich Western countries don’t think of that as technological innovation. They might think of that as kind of good enough or appropriate technology for a condition where poverty is more widespread, but my invitation there is to say, “Let’s look at all those categories, right? And what are all the conditions that give rise to this incredible technology?”
So that is one way of trying to think about our hierarchies of high and low tech, and all the messed up ways that we, in rich Western-context privilege, a certain kind of innovation that’s born of labs and professional expertise. So that has to do with economies and class and so on, we can get into more of that if you’d like to.
But the other thing that you’re naming is something that in disability studies is called “super-cripping,” which is to say, there’s a fairly rigid set of stories to which non-disabled people would like disability to conform in order to be acceptable. In other words, the overcomer story that you hinted at, where we would like to have a nice ending to a story, even if it’s by technology, or some other insight, where people say, “I am no longer defined by my disability, I have overcome it by, let’s say, athletic prowess at the Paralympics.” Right? Or by being, in the case of Down syndrome, a lot of people want to say, “Oh, well, this person is an enlightened being and happier than the rest of us, and therefore exists to teach the rest of us.”
All of that’s a really — that’s a deflection from letting people be actually fully human, right? All of that is a way for non-disabled people to say, “That’s a separate experience over there. It is for me to be inspired by… It is for me to be grateful for my life.” Right? It’s a way, still, of distancing ourselves from the condition of disability. I often say that my classroom tries to be like a critical theory seminar housed and smashed into a design build studio, right? Which is hard to do. I mean, but that’s the work of kind of — science and technology studies is often the seminar where you write the papers, and you’re quite critical of the role of technology and the over-claims and the hype that it makes for itself. But rarely do you see some of that critical discourse enter into the rough and ready like, “Okay, what are we going to patch together and make together? And can we make something that’s got those questions involved in it?”
In the case of Amanda, we ended up building a lectern with her that was a collapsible, portable lectern for short stature that she could take with her when she traveled. And to me, that was a way of having an engineering challenge that had very mechanical requirements of it. I mean, it was a very engineering-y problem — “problem,” quote, unquote. But it had a question that didn’t end with the result. In other words, anytime Amanda walks into the room and unfolds that lectern, she is enacting a question in the technology, which is to say, that doesn’t conform to that super-crip story, or that overcomer story, or that noble suffering story. Instead, it says, I’m here with my gear at my scale, and every time I use this, I point in neon with big arrows to the standardized dimensions of the world, and I just let the audience live with that dissonance a little bit.
I hope that what that does is try to point to the unfinished work of the ADA, for example. I mean, the unemployment statistics, even in this country, with all its riches and resources, the unemployment statistics for disabled people is still really high, right? And so, I do want students and I want readers to live with the unfinished dream and the very real limitations of designed anything. At the end of the book I get into this. The end chapter is called “Clock,” not because it’s about a physical clock, but it’s about design for slowness in time. There is no substitute for politics that design or technology will touch.
I guess the challenge to all of us teachers is to say when and where technology might do the reparative work, either through culture and symbols and the way that those operate, or through very modest, very handy, garden-variety problem-solving in the engineering way. But also to say, “What are the limits that any built thing is going to bump up against?” Now we’re in the realm of policy governance, economics, and more. It’s hard to get those things right. I mean, where does this come up for you in the classroom?
SK: Oh, wow, I didn’t think you were going to ask me a question. I mean, yeah, just the one image that I’m sticking with is, often you learn about something at the assembly, and someone from that community is there, present, and then everyone claps and wants to move on, but they’re still there packing up all their stuff, and the difficulty of their reality is still there, doesn’t have this very pat, like, “Yay, we won that battle,” and how to leave people with that discomfort and that crisis, our failures for disabled people continue daily.
SH: And my hope is, right, that again, some of those — that’s why it’s so important to me not to have folks… I don’t want students to be animated by this sense that the need is so urgent, they need to wake up every day and not forget those disabled people. What I want for them is to say, “I find myself in a body that has needs for assistance in all kinds of forums, and over my lifespan, those needs will wax and wane and change in lots of ways. And I will be connected in an ecology of care to young children or to my elder parents, or whatever, but that I live in that world, too.” That’s where you say, so even if that person is packing up their bags at the end, and where you’re saying there’s real difficulties, you recognize it as human, right? And that you say, you live on that same planet, and so then you do genuinely wake up and say, “I want a world in which help and needfulness and assistance is not only natural, but can be a dignified form of a life.” Right? That’s to me, where you get the real sustainable change.
But also, the wonder, and I’m not sure, I think sometimes — there’s been a lot of criticality about hackathon approaches to disability stuff, because it does frame it in this kind of like, “Oh, well, if you just get enough energetic people in the room for a concentrated amount of time, we can just whip this thing out!” As though any misfit condition is reducible to a kind of mechanical fix.
I do think one should be wary of some of the frames of those things. But the wonder of a sustained engagement and building something together, especially something that comes from someone’s wishes, as in Amanda’s case or Alice’s case, in addition to their needs, I do think — that’s Sara’s kind of Operative Theory of Change. That when our wonder is activated, and when our sense of connection is activated, you don’t have to think of this, “Oh, those poor people out there, let me go and sustain my energy to save them.” No, if it comes from you, from that real place of finding your own body in that same interaction, then you don’t have to fake it, you know it, because you know it in your bones.
SK: Yeah, I can definitely see that as such a wonderful way to both always know what to do, because I think we have a sense of when people are being treated like a human and when you’re being treated like a human, and I think that barometer is very trustworthy, so I think it helps in this process.
And reflecting back to your own life, I mean, I’m thinking about, when are moments where I’ve felt most disabled. They’re often probably moments I’ve felt most humiliated or most angry at the world, and also it makes it the hardest to talk about because I saw myself reduced to something that I think I’m above or beyond.
I have two little kids and everyone says their life is so great, but them not being able to talk and seeing a world of talking around them, as I know, is very difficult and painful for them. And not to just infantilize them. We have another layer of assistive technology with voice and a lot more things coming on. What’s your sense of the role that’s playing in both how we feel more able than how we relate to disabled people?
SH: Yeah, and let me just, if I can just pick up on that one thread that you were talking about, about experiences in your own life. I do think that there are people who — there’s some really revealing evidence, right, of when we say, “Oh, that’s when I felt the most shame.” That internalized sense that the moments where we needed help and assistance were associated with shame: that’s a really revealing moment of understanding how culture has shaped our ideas about ability and disability.
I guess I’m just thinking about members of my own extended family who would rather not visit the museum, than visit the museum with the use of a wheelchair, right? Even they were semi-ambulatory, but they were not able to walk or stand for long periods, but instead of going and using a wheelchair, and the association was shame and stigma, they would rather sit that out. And these are people who are related to me! I’ve been working in disability design for — and with my son with Down syndrome, it’s so interesting.
Or you see the resistance among older adults to take up hearing aids, for example, whereas glasses are utterly thought of as a very normal extension of assistive technology. Hearing aids carry this kind of stigma of needfulness about them that people resist, because they knock out our sense of being independent in a narrowly defined way, right? That our independence hinges on doing things for ourselves by ourselves, rather than saying that a more capacious, broadly encompassing notion of independence could include help in it; that our self determination and our agency could also include the forms of assistance, medical assistance, technological assistance, personal assistants, and otherwise.
I’m glad that you admitted that there was a kind of shame register to that, because I think a lot of people don’t talk about that, right? And that where, as much as they want to say, “Oh, yes, disability is natural and normal and a part of human diversity,” it still carries with it those markers.
So can you just say again, then the segue to assistive technology once more?
SK: Yeah, and thank you for that. And also not to keep adding, but I think a lot of the discourse on toxic masculinity hovers around that same place of being unwilling to sort of unearth that shame and fear, just so they can be healthier and put on a mask or whatever is needed to not…
SH: That’s right.
SK: …to face these calamities.
SH: That’s right. And just that, I mean, because I think it’s so interesting to talk about, feminist philosophers have given us this idea of the “derivative dependence” that comes to any parent, right? So we talked about our children as dependents with a “ts” at the end. But I think too little, we really realize how… the kind of political change that happens when you become a parent, is… the derivative dependence, that accrues to you, right. You are now dependent on the state or some other community environment for the child care that you’re going to need in order to perform your job, you now have to materially keep alive these human beings, and you can’t do it alone. I mean, fundamentally, you can’t.
And when your child is sick, you cannot go to work, the state dependence that that brings to you and I think — yeah, a lot of that masculinity is kind of the polarity opposite end of that, of this kind of repulsion about dependence of any kind. If we could reframe dependence and assistance as a natural part of our lives, I think we’d be a lot better off.
SK: There is a certain level of quote, unquote, “assistive technology” that has found its way very deeply into our lives and even more with ubiquitous internet access. Where do you see that playing out? And is that doing the universal thing that you talked about, universal design thing, where it’s great for everyone? Must be much more complicated.
SH: I mean, it is complicated, but it’s fun to note it. I think a lot of people don’t realize that closed captioning, for instance, came to us by the long legal fight of deaf watchers of television, who said they wanted closed captioning, not to be an extra little box that you would plug into your TV, but built into every stock manufacture of all TVs themselves. And there was a lot of pushback from the industry who said it’s going to be too expensive. But at scale, it’s like infinitesimal, it’s impossible to calculate. And I think people forget how useful captions have become, and how much we’ve come to rely on them. Even on a social media feed, they become a kind of pull that grabs you on a autoplay video, for instance, but that you can also watch that autoplay video on silent if your kids are in the next room trying to get to sleep, or if you’re in a public place and don’t want to disturb others with the sound, or you’re watching the game across the restaurant and so on. Closed captioning is one kind of electronic technology that people forget is disability tech that has arrived in the mainstream.
But yeah, I mean, it’s impossible to put a value on some of the out-of-the-box accessibility features of the iPhone — much as I hate to sort of glorify Apple, they don’t need it from me — but it is quite remarkable among my disabled friends to see the way that speech-to-text has come along, for instance. Like my father uses speech-to-text exclusively, he is a seeing person, but just the sheer typing for him, which has just never been natural, and never part of his work, is almost impossible. He’s using speech-to-text all the time, and I know an increasing number of people who do so.
I think when the iPad came out, people forget this, but the iPad, in the tech community kind of got poo-pooed for being this kind of passive technology, the touchscreen interface. People sort of said about it, in a certain stratum of the tech community, people said, “Oh, well, this is for magazine readers who are going to consume content only, and they’ll never really make content.” At the time, nobody was critical enough about, like, well, there’s nothing natural about a mouse and a cursor. Think about how abstract that is, the idea of moving a mouse off to the side that then corresponds to the 2D flat-screen environment and the button and everything that it’s meant to do.
I have in the book a story about a man with ALS [Amyotrophic lateral sclerosis] who designed a whole residence for himself and other people with ALS and MS [Multiple sclerosis]. And I’m telling you, an iPad with a touchscreen interface that you can manipulate with your fingers, but also with a soft-ended stick that you hold in your mouth, I mean, I would call that nothing short of liberatory technology, Saber. And I am not a tech hype kind of person. But that is remarkable. The touchscreen interface, the immediacy of it. To say nothing of its use for kids on the autism spectrum, my own son with Down syndrome. The logic, right, the logic of the touchscreen: I touch this thing, I drag it here. All of that incredible sophistication has done a huge amount for us in the digital space. And it’s impossible to overstate it.
Maybe you’re hearing a kind of in between disposition that I have, right, because I am critical of the kind of tech savior-ism, and the idea that tech will somehow solve what are actually political challenges. And yet, nonetheless, the market does deliver some things that build bridges between bodies and worlds that have been absolutely revelatory. So I find myself trying to seek evermore specific and disciplined languages to keep characterizing when and where and how and for whom, and at what scale, and high tech or low tech, and for what wishes, and so on? I want all of us to have a rich vocabulary for this stuff.
SK: Yeah. I was just going to say in the absence of movement on the disability front, but really, the ADA is the exception.
SH: Yeah.
SK: It’s always been a lack of action on the disability front. And the ADA’s a very remarkable thing that happened, and it took a generation of folks to enforce it.
SH: Yeah. It’s also a law that arrives in a culture deeply organized around individualism too, Saber. I mean, we have to say that, right, it is really important that with curb cuts, the slope is calculated for a curb cut that presumes a wheelchair user on their own, right, not being pushed in the built environment. So it needs to be traversable in a reasonable way by someone either pushing wheels or using a motorized wheelchair, but you have to presume the absence of a person who would help.
And so, good, right? Rightly so. But that peak individualism is also why elder care in our country is really in a still sorry state overall. Whereas in other parts of the world, it would be unthinkable that older adults would be warehoused and kind of managed in the older parts of their lives, that they wouldn’t be part of an ecology of care, in a context where individualism is not the reigning paradigm of how people live their lives. In other words, other cultures presume that the family structure and indeed the extended family structure is the normative way in which we live our lives. And that, of course, comes with compromises too, about who the caregiving falls to, and the obligation that arises. I mean, it’s deeply complicated.
Atul Gawande opens his book, Being Mortal, with a really fascinating discussion of this very thing, of being the son of immigrants from India, with extended families still in India, who thought very deeply about his grandfather who lived to be, I want to say 110, I mean, really had a very long life, and all of the decisions about care and family governance and so on that happened in those complicated dynamics.
SK: Yeah, yeah. You can almost imagine in a society that sort of accepts individualism to its max and capitalism to its max, you also need this sort of assistive technology, because you’re left on your own devices.
SH: That’s right. But you need legal guarantees, and also, it leaves aside the question of poking at that individualism itself, right? At the presumptions of it, and the trade-offs of it. Without romanticizing, either, it’s just really interesting. It’s political philosophy at its core: what is the node of a person? And where does that person start and stop? And what do we owe each other? And in which material goods, and so on? It’s really interesting.
SK: Yeah, but I’m glad you noted the idea that families are superior, that there is an oppression and inequality within a family. I’m sure everyone knows that, but I think it’s worth pointing out that a lot of people choose individualism because families are a source of oppression or marginalization for them.
SH: That’s exactly right. And that’s what Gawande really grapples with, his parents were determined to leave that culture, and yet they understood the virtues of the family structure that they came from. So it’s very much a, “Let’s be as specific as possible, right, without making an ‘other’ out of each other.”
SK: We’ve covered so much ground and so much big-picture stuff, I’m wondering — and our audience is a motley crew of educators doing all kinds of things — I wonder if there’s something you want to encourage them or offer them to do or try in their classroom that helps along this way. And it’s something we’d like to feature on our website. So if we could talk about it before they look at it.
SH: Yeah, I mean, I think one of the things you could do with almost any age of a child, and I’ve presented this subject to my own kids’ classrooms, as young as fifth grade, is to help kids think about not just assistance, but adaptations. So if you want to launch, for instance, a STEM exploration of design and disability, you might help kids think about the difference between purely assistance and adaptation. And by that, I mean, it’s a really simple way to help kids understand that if they’re going to work with somebody, for instance, in their classroom who is disabled, they could think about the things that that person is doing with their body as deeply adaptive already.
Everything that that person is doing with their gear is adaptive. It’s not just that this person needs special help, and so we’re going to come along and do more special helping with them. It’s that they’re already doing the work that you also are doing, young person, which is adapting every single day. We know this from the science: it is the quality of our entire lives to be deeply plastic and adaptive in any of our environments.
If you can help students shift their thinking to adaptive technology, not as a kind of making one word a bad word to say, but just pointing out to them the difference between saying, “Oh, we’re going to build some assistive technology today,” and then saying, “Oh, no, we’re going to explore the big realm of adaptive technology. What’s the technology that’s adaptive for you, young person? Okay, where might we come alongside someone else, and think about an adaptive technology they might be wanting?” And aren’t we all going to look at the end and say, “Where is our attention? Is it on the tech? No, no, it’s on the body, it’s on the person, right? It’s on the miracle of that adaptation.”
If we see it as miraculous, then we see ourselves in it. Our wonder is engaged. And then yes, the tool comes along, and might be very clever, it might be just the right thing at the right time. But it’s never the protagonist; always, always it’s people, it’s people at the center.
So I think there are ways to show students that stuff that doesn’t do the, “Gee whiz, what a disruption and what an amazing feat of engineering,” but to say, “Look at these people in their lives with their stuff intact. Let’s ask them their name and what they like to do. And let’s focus on the dimensionality of their lives, not just on the cleverness of their gear.”
SK: Yeah. And doing that at a young age can be so powerful —
SH: Yeah!
SK: — such an exciting and healthy way to look at the world and to guide your learning.
SH: Yeah. And there’s a wonderful film on adaptive design, on adaptivedesign.org, that’s the storefront that I mentioned to you that makes the cardboard furniture. There’s a wonderful short film that will be great for a lot of different ages, and it does this work in lots of ways by showing a protagonist working together to adapt her gear. And I think that would be a great prompt for folks if they’re looking… to start, to kick off a module, that’s a great one.
SK: COVID and social distancing has really wreaked havoc on a lot of things, especially those guarantees of publicness, and being able to be in public, and thinking about all the kids that have accommodations, that they’re not getting them. I’m wondering if you want to share any of your experience on that side, and also, how you’re thinking about moving ahead in this challenging world? How do we keep the bodies of those other people that we don’t see much anymore in our heads?
SH: Alice Wong, who just released an edited book of her own, called Disability Visibility, has said, and I think this is so right, that disabled people are actually way out in front on this stuff with COVID. In other words, she calls disabled people, like herself, modern-day oracles. She says, look, we’ve been asking for a long time for things like telehealth, much more strong telehealth practices, because as people who may be immunocompromised, or for whom getting out the door for any little doctor visit is quite onerous, we’ve been asking for flexibility on that for a long time.
Same thing with work-from-home options, right? That, up till now, has seemed like, well, “gosh, we sure would love to, but we just can’t quite afford that accommodation.” And look, oh, my goodness, it turns out, we can. It turns out that the shifting shapes of the world are able to be made more malleable and more mutable than we often think. So there’s a really interesting way in which disabled people are, again, a resource out in front. If we ask them, what are the other kinds of ways that you’ve done workarounds? We might learn quite a lot.
I do think we’re seeing the innovative ways that people have had to figure out new service designs for shopping, for instance, protected elders-only shopping hours. I mean, that just seems like a good idea in deep winter to do anyway, right?
If we’re just talking about making our structures — folks forget that services are also designed, right? So that’s another realm of thinking. How do we rearrange the constituent parts in a way that’s more human and humane? I mean, one of local bookstores has, not just elders-only shopping hours, but vulnerable community shopping hours. If you are somebody with a pre-existing condition, you’ve got this protected couple of hours a week. I thought that was a beautiful provision. It costs them nothing to do that, right? To take a couple of hours a week and say, “We’re just going to make sure if you’re here, you got emphysema, or some other kind of chronic low-lying condition that makes you vulnerable, here’s a way to rearrange our services.”
People are seeing now that acute crisis is always a moment to say, “Oh, what are the things that we thought were locked in place that were just locked in place because of the sheer inertia of the way things have always been?” This is the moment to say, “How do we pry open the seams and cracks of the world and see what else can be shifted around?”
We’ll see. I mean, for my own son, Cambridge Public Schools is doing a good job of trying to prioritize kids with disabilities because of the incremental supports that they need. It’ll be interesting to see how this school year goes. But I’m cautiously optimistic at the moment and really grateful.
SK: Oh, that’s great to hear. Yeah, and thank you for reminding me that it’s not… they’re missing from my life, that’s the important thing that often — yep, lots of people have been social distancing for a very long time.
SH: That’s right.
SK: And now we’re finally taking their thoughts and concerns and their ideas seriously.
SH: That’s right. It’s so often the case that we think, “let’s not forget,” and we forget where native expertise resides. Yeah.
SK: Thank you so much. This was so helpful. I feel like what you’ve said really gives folks a way to think about disability in a much more thoughtful, personal, helpful way, that they can actually grapple with and do some work on. I think that’s really to be appreciated. So thank you.
SH: I’m so glad. I mean, no one’s more inspired than I am by folks who love and are capable with technology and that malleability of the built world. It is my great joy to find partnerships. I know folks who are listening also like to create those situations, so it’s great to be here. It’s inspiring.
SK: Thinking for myself, I know there’s a lot of learning and work to be done. So over at Processing, we’re excited to learn and do that work.
SH: Yeah, thank you.
SK: Thank you for joining createCanvas. Once again, I’m your host, Saber Khan. createCanvas is produced by Processing Foundation and supported by the Knight Foundation. Our editor is Devin Curry, music by Lysha, [available on] lysha.bandcamp.com. Special thanks to Processing Foundation board and staff. You’ll be able to find many of the things discussed here today in the show notes. And before you go, please visit processingfoundation.org and check out the education portal for free and accessible educational materials. Processing Foundation is on Twitter, Instagram, and Facebook. You’ll find this and future episodes on our Medium channel as well.
