Sara Hendren | A Better-Designed World | Good Life Project Transcripts

Sarah Henderson was drawn to painting other kids studied it in college. began, to build our body of work and career as a fine artist, really focusing on painting Dennis There is of experiences and turn in what from me out looking in may, have seen like a very different direction, but from the inside looking out was a completely organic and align expression of her blended passion to see to create to design if service. So now, an artist design, researcher writer and professor at only a college of engineering. Sarah describes yourself as a humanist intact, focusing on the intersection between disability or the perception of it and what she calls the built world or how the world is designed to either support or dismantle freedom and autonomy based. Our bodies and our capabilities and if you're thinking well,

This isn't about me. You will quickly discover how well intended yet misguided that assumption is likely to be it is about all of us. Sarah's work over the last decade includes collaborative public art and social design that engages the human body, technology and politics of disability. Things like a letter for short stature or rent for wheelchair dancing, she's also cofounded, the accessible icon project. Co created a digital archive of low tech, prosthetics and her work has been exhibited. everywhere, from victorian albert museum, the dock centre for contemporary art, the veto, design, museum, soul, museum of art and other venues and is held in the permanent collections of the museum of modern art and cooper hewett museum. Her new book is what can a body do how meet the belt world. This was a conversation that took us jeep inch

the intersection between how we look at ourselves We moved through the world the assumptions we make the things we see and don't see really awakened me to so much that I think I have not. And may be taken for granted love. This conversation really excited to share with you on Jonathan fields, and this is good life project. The not yet global private aviation leader is known for personalizing every detail of your travels, because net, yet standard is just to meet their definition of perfection. It's too exceed yours, this, nevermore at netjets dot com so the ten percent happier podcast has one guiding philosophy. Happiness is still that you can learn. So why not embrace it? It's hosted by

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to start your one month, free trial with the economist today, because the world won't wait. It's interesting the so much of this relate the cook. Recent body of work revolves around design in the context of the village disability and we can look at a dive into what all those terms are or are not, but it seems I threw didn't much earlier and lay fashion for you was painting was fine, are yeah, that's right. I mean that is my mind, I bet he notes the representation of ideas in physical stuff rate, which actually has a pretty strong rhyme with engineering when you think about it, but I could never have imagined that, but that was my starting out the making of things you know the the I think really comes from a sense that a lot of the language that we have like the bullet point language. We have to describe the

is insufficient to how weird and complicated the world is, and even from an early age. I feel like an intuitive leaden, have, though, the words for that need, but that certainly felt, true right that at some point our words, All shore, or at least our words that are the purely yeah, just the directives and the outlines of the world, but that, but that symbolic languages and material languages the way that stuff speed via color in shape and quality, that has always been a big passion of minors. The ideas in concrete stuff So in a way, you know the benefit of middle ages. Looking back and seeing the ways that the true self, actually like roundabout way, tends to come back and come back in different ways, but you never could have told me twenty even ten years ago that I would landed in engineering school I mean,

The language I use now to give context to your early attraction to painting is really compelling. I wonder if went back when you really start to become drawn to yell even if you didn't have the language, did you have a sense for the reason that you were drawn to it was because of these things you just dressed well, I certainly remember remember being in college and taking figure painting classes for the first time and, for example- and I remember having to pay that really close attention to if you're gonna paint the human form brighton, there's, no, there's no geometric lines in it if you're going to indicate shadows and contours you're gonna have to actually use in a purple, for instance, for shadow in the temple or something depending on the skin town, something very uninterpreted right. We're learning that, and I remember thinking how counter intuitive that was, and yet how apt and discuss

and then I remember in college my perception kind of changing so that I will be sitting on the subway and I'll be looking at people, and I would think purple. I would think purple right looking at somebody's, and that is a kind of state of attention that you actually can't. I don't have it right. This second cause, I'm not doing a lot of drawing and painting you have to cultivate it like a muscle, but I remember that being such a kind of pleasure to think. Like my vision has altered, you know my the quality of that attention can be cultivated. Like a muscle- and I think you know Nora Ephron famously said you know- I want to make work where people look at it and they point to it, and they say it felt like that. you know it felt like that, and I do think for me again. I hadn't heard that long ago, but I do think for me that that triangle of exchange, you know being able to say. Oh look. Yes, here, that's how it felt these things held together,

these contradictions of a messy life. You know that it was both happy and sad at the same time that to me felt like the truest thing and not just to to recognize it myself, but to say, oh, you could have an exchange with an artifact were both maker and audience were we're having different experiences but shared in that that are, in fact, that thing you can kick around. Then I love this concept of them of attention. You know one of the things I think so profound that any sort of art based training is that here, whether she really young as a kid or in college or masters,

the world is at. You know pretty much across the board before you learn to express you learned to say you know, and, and there is an explicit focus and attention and training on learning to stop seeing the representation of what we've been told. Yet, like the picture of the cat, yeah that'd be learning to see what's in front of you and it is so powerful, and I think, when you first experienced like that, it's like that for the first time, let us I actually haven't been seeing the world trying everything the representations of what I was told. This should look like that's right and, of course, the implications for that. Our profound driving like I am my drawing cat shaped ears and a cat shaped knows right, a triangle in these little whiskers for the abstract idea of cat in it to make my drawing, but, of course, in the real world and our interactions. The question is: am I responding to the idea of this? listen or have I paid attention to what it is there actually saying to me, but it's interesting to me that you're a design not because I do think that design.

So calls for that and, in fact, design calls for a kind of generalist disposition when it comes to attention right, in other words, not just what I'm supposed to be paying attention to it all this periphery out here. The montana are really that's what I try to cultivate a my students. And so it's interesting to me because you run this good life podcast. That is a very broad, curious, generalist disposition. Is that right? Is that? Do you think those share a core yeah I do and- and it is very much by design- you know- I- I take a really broad, broad stroke at humanity. I I look, I'm curious about all different aspects of it and them that I am fascinated by people who go narrow and deep and spend and devote their entire lives in coronary. But I think it's incredible. It's also never quite been the way that I'm wired and- and I see that near the blessing in that so often is that you develop a levels of craft and mastery,

inside. You know that takes a very often entire lifetime to allow it to create what nobody else can create, but the downside is so many times the thing that I have allowed you to get to that same place, exists in another domain and has for decades, and the fact that you're, so silent is what keeps you from being able to see it so and so on I'm more curious in the cross, pollination side of things you on the grass talk and end the breaking down, silence? I am too, and I would strongly venture actually that people in design, if there really working across scales, right if they're asking if there are able to work in a way that asking what should we built right? Not how can we optimize and improve on a small feature about should we build, it does require that common voracious generalist, curiosity, because otherwise you miss things, and it is interesting because how a gardener talks about crew

fifty and fruitful asynchronous right about. I mean this is your domain, so here you know all the stuff, but when you were talking, that's what I thought of that kind of like how would you get that fruitful grinning, and I will say that I recognise that at least I wouldn't over claim for my own practice, but it is a fruitful asynchronous small f small for me to be an engineer school as a trained artist, because I am still all the time not just trying to be generalists and and curious and open, and an imbecile, thanks, but I am literally saying all the time tell me again What momentum is I'm sorry, everything the sum of talks and the sum of forces is zero and both I really don't understand, and I mean that that's partly just gaps in my education and partly I'm just kind of like she, you is. Are you kidding me in search of zero like that that what a beautiful idea right so I get to learn over again, but I feel that a sinker

it's for sure and it's required being comfortable there then, but I mean it's also so necessary for true creativity and innovation. You know it's the power of the amateur right yeah. It is the person who walks into a room- mrs, I don't know, How will we open to learning? Yes, I dont know an outcome, Wheatley relaxed right about that. I mean not a purse, there's that little friction of kind of like ooh. What's going to happen next, I'm not sure if this thing's gonna go off the rails, but that also for me, feeds me. You know that sense of like a wannabe in that place where it feels like the learning curve, is quite steep.

And the beginner you know the getting the do over. I mean it took me a while in engineering school to be fully transparent about that, because I was a little worried that my students would find out. You know that I dont actually know what discreet math is, for example, just the other day. They said, sir. It's advanced counting and I thought great s love night, but at your, but because we could laugh about it right, that's a kind of comfort and my own in our position and their own sense of what it means to learn together in a value that quite a lot. I love that you you just use engineer language. Also you you posted clashing eloquent. The question was: what should we create, which is really interesting, because my senses. When most people go out into the world, especially earlier in their sort of exploration of whether it's art or design or any any sort of leak, making expressive type of thing, the question very often isn't. What should I create? Or what should we create it's? What do I want to create and there's really interest

tension, their yeah. There is- and there is also a question in the room of what can be done- that that the whole question instead of the the are the should and- and I say that with love- because right, I'm in the world would not operated as it does. If there were not people deeply interested in the house, for its own sake, you know in material science and in the way that circuitry is built in The properties of carbon fiber ina, like all those how questions they are, a really important ones, but it is very easy to get romance by what the, especially in the digital sense of what can be done what's coming? the pike as new and therefore axiomatically important, like a higher amount or whatever to lose sight of that question with a desirable world and use it as a plural world unless, ways, and how would we know right and all the need to be philosophically grounded and in those bigger question, which are the questions of the humanities right. That's why design lives in between

the pure? How of engineering in technology and in the wider questions of the arts, but you're right that either we centre the kind of what I want to do, because it's cool or the how? Because it can It can be done and, of course, you know teaching my students to ask this. What should we build and what, if you start with people- and they are a mess and contradictory and right, deluded about their own motivation. Some of the time, all that stuff is to invite a kind of a qualitative dive. That's really hard to do right if your problem, solver kind of person, you know again as in it with love, because I you know, I love knowing folks who, for whom the mechanics of the world are so lively and did it in their heads. You know, and I feel like it's a beautiful role for me to come to try to stop acting like a cave. It humanity's are asking us to big big questions. How do we get her in the first place? What's the after scenario that we're trying to see and what will be grounded in said

and that's what the book is really chronicling. It sort of people asking those big questions and re making their world with stuff, so not just pondering but really in their work, at a laboratory reshaping the actual stuff of our lives that weaken tinker with and kick around there I it's interesting also means the m. On the one hand, I love the idea of bringing people into the creation processes design process as early as humane it would. However, you know whatever name you wanna use for design thinking he was better design, but all it did. You know that the first step is always empathy. Any its problem. Identification is. What is the forget, the question that you are the solutions the questions and who are the people and yet, on the other side, there just like little thing:

sitting on the other shoulder with me that is near. I don't know if this is properly attributed. I know sort of like been all over the place that he was henry forward. Yelling said: well, if I asked people what they wanted, They were told me if asked a horse s right. You know, there's a tangled young creature, yet right, yeah yeah. I think in fact I'm somebody about this because, like for people who are in the weeds, like participatory design, I think has misunderstood in this way. Is that people think of it either as Well, you know in the status quo the non participatory sounds like some in specialist out and allow pretoria in their studio, making their genius product and dropping it and on the world a cancer people say: ok, participatory design is meant to be a corrective to that. So what do you do? You start with people ask them what they want us in their needs. Ok, the pitfall of that is that it's on a customer service. Its action. You don't take a lot of surveys, interview a lot of people and then go obediently, build what they tell you write that that's where the fine art of of design work. So when we

we do participatory design are human centred design course at all and where I teach yet we do that big color ethnographic training when a wine when people say in not say what do they do and they not do. How are you going to? You know manage these kind of contradictions, but the role of the designer of the creative piece is to synthesize all that and to see, as my husband would say. What's the note behind the note was the feedback behind? the feedback, your actually mining- and I say this in the book when we- I sort of talk about building a lecture and for short stature with a woman named amanda workers and students, mine that feedback for insight, and this is what I mean that generalist thing the capacity to have your antenna wide open to recognise insight when people are telling you what are they really telling it right, my husband's a documentary, editor. So when he's in a production team of people and people are saying the pay, He has really slow we're. Not picking up this concept he's asking himself. Is it really does this is too slow, or is it because to beat took out they didn't. We didn't firmly established this story beat and that's. What's gonna get sex

So it's that takes that real nimble agility. In your mind, to to be able to see and perceive what people are really telling you and to deal with contradictions. So it is between those things as two shoulders right of like what are people really doing asking for that humility and also the confidence that I have to make sense of what are very anecdotal, messy kind of human stories, yeah and also, I think, the confidence and the vision yeah to believe that, even after you taught everybody yet gotten all the input that you could possibly at your like. You are the the the bad as this qualitative and quantitative research on the planet, gathering up. Yet even my nippur insights down, there's a little voice inside your head, which says there's something more yeah

just in my head and I need to be lake- am I'd that bold right to still like leave with that. You got all right as if I've. If I follow my face, then I've got nothing to defend myself, but if I don't it could change the world that's right! That is right. That is right and we do give our in this human centred design class, not at all classes, but in that class we we give them a mandate of look ten years out because we are trying to give them the practice in the field of that boldness. Precisely as you say, Jonathan, because we know that right most of their engineering work is gonna, be Erie constrained in that optimization thing writes like this, the nozzle on this spray. Can. How can we make it? You know pump a little bit more fluid from it's nozzle right, instead of going like. What's the idea of the way that people are going to interact with digital devices,

in the future whatever. And how would you then get to that parity matic shift? That's where again, that quality of attention is so required and the confidence to do so. But, of course, every people listening to this will be like yeah, but Steve jobs like what hubris you know to say people, I don't know what they want it's. There is a seed of truth in that right and yet I want to think that there's a lot of good design practice that does have that confidence without the unnecessary. You know the kind of bravado of that, but you have to I mean the iphone in my field ride the iphone actually is out of the box very accessible in an intuitive way that doesn't have to be explained. It is quite an achievement. You know So there is something and- and yet when it came out, I remember lots of people. My age saying like why would I ever want a camera on my phone? I cannot imagine a use case for this, like what a what an extravagance, what a gilding the lily to say. Nothing of the ipad is just so interesting

wants to glorify apple less than meat. They don't need that right, but on the other hand, just using a kind of familiar to hand. Example, design is really complicated and people think they know it when they describe it as participatory or not, and it's really in the middle yeah. Now so agree, I mean it's funny when you, when you talk about someone like Steve jobs, you know and he's the person that so many we like to fall back to is this iconic guy who goes there when you look at people sort of like across the spectrum? Who are the are the ones who are involved in believing that your language is paradigmatic change, the change the paradigm? There is so their survivors, biased, like in that too. We love telling the story of the people who were bold and brave and were resisted everybody else, and there they changed the paradigm. You know, and we look at those people and we say there geniuses and we look at the other people who did the exact same thing and failed,

We call them arrogant, yeah, it's true, and what to make of all the readily available, for instance, greener, a technology that we have available. Has has not survived just by political lack of political will, write and sheer force of inertia so where we had to decouple the idea, even at paradise, matic importance and scale from what it means to land and peoples I and the complexity of what it means to the inner shun, your old habit and take up the new one right and this where I think why the kind of apple example falls apart, because it's also built on a lot of its built on a human desires and things that art necessarily building a better world, but that it can be successful innovation, tumor product right. So we have to think about what do we mean when we say boldness and right? How would we measure those and thus impact them, is interesting in the book? I do talk about a ticket David Edgerton. This historian talks about how we should measure technology

in use and across timescales to even assign importance to those ideas. In other words, we tend to look at moments of innovation or invention and say right. That was the peak. That's when it landed. You know spaceflight and so on, but look at the rickshaw look at the bicycle. Look at the condom think about those technologies in their use and apply that metric. You know not just how many unit sold, but what that made possible in other kinds of infrastructures at those things held up and so on the kinds of a kind he's that rebuilt the affordability and distribution of those things. So there are mental models at hand, but you're right that we tend to the survivor. Biased thing is certain where a lot of the stories get written there and we also have the time. With stores. Yes, it is run like a human consumption and garlic to tell me that story. Yes, the righteous cannot talk about the other one right right, alright, that's kind of where we're drawn in in the world

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when you go to a master class, dot com, slash goodlife, that's master class dot com, slash good life for fifteen percent, off an annual membership, master class, dot com, slash good life or just click. The link in the show notes we jumped into the deep end of the port pretty fast yeah. We do you and I want to explore this- the the bridge that you took because you you went to school, for fine art, you're and and sounds like when you got out like okay. So this is what I'm going to do and you start building a career and you're out there in the world as an artist and also get really interested in history and start going down that rabbit hole towards a phd yeah that that ends pretty quickly, though- and I guess at this time so much is changing your life you're having kids. Yet you have a son who also is living with downs yet and get exposed to an end,

I was like it was like this season of reckoning, reimagine nation and really questioning okay. So what am I really doing? What do I want to be dairy yeah? That's right, and I, and so those things did happen kind of sequentially in. I remember a pivotal moment for me as much as I loved making paintings a pivotal moment for me, was going to the senior thesis show a friend as an undergraduate and her all of her paintings were called journalists. number. One journal number two journal number three. I remember having this strong conor repulsion response and thinking. I can't make I can't make Sarah private worlds. I can build a life on that. I can't. I can't think that art is all about this self expression that lands on the wall and, as my private, universe. I just that lets the strongest memory. I have from that season. A finishing up- and I think what I didn't know the times that I was very hungry to find a partly collaborative practice, but also to find a way that ideas living things that isn't just depend

on the singular that modernist idea right at the singular artist who has a you know, whether that then they put out on the canvas and that's kind. The end of that- exchange, and so I went to to gradually. You see laminate. I was therefore for years to dissertation research and everything study intellectual and cultural history because I had this hungered ago like war. Why do we assume the things we do and I was like a philosophy minor and I was just write- a really was hungry, for was the legacy and inheritance. the ideas and then I started going to conferences in that phd and thinking. I'm not. I want just right papers like is this all there is, and how does nagging feeling and so oh, I would sticks, stick around for like the next milestone and got my masters and then got you know, did my oral defence and all that and I remember It- went to the netherlands to do my dissertation research. When my husband and I said to him, I feel like I'm

it'd, be like a journalist and a furniture maker like I wish that I could do both ideas but represented in a popular voice, but then also see the result of my work and and in a weird way. That's exactly what happened if you squint right. This book is written in a really journalistic form, and I do a lot of adaptive kind of witcher and tools in my building kind of process, but along the way right. It looks really neat now, but in fact I became a phd dropout. We did decide that was in my early thirties that will, let's you know, we're open to starting a family. As the first of my three children, Graham was,

with down syndrome and that ushered me into a whole world of visual culture, material, artifacts and ideas in stuff, meaning prosthetics, prosthetics and assistive technology. So all the extended gear and appendages that we use to get our bodies to the world and all the ways that his body was not in a non normative way, trying to make its passage through the world and that's where the journalist furniture maker, the artist and the ideas person, that's where I'm making sort of this kaleidoscope thing with my hand where all the stuff snaps together the colors and the shapes snapped together. That's where that moment happened where my imagination was so captured and the politics were

urgent. You know and that's a powerful alloway and long story short. Then I went back to to get em if hay in london and visionary school in that middle space of design, but it could not have predicted it at the time and it took walking away from some things in some security in some scary moments for sure yeah. I'm because you doing this, you know in the context of in his documentary filmmaker, which is an amazing career, but also not known as the most like you, you don't get a paycheck every day, you're raising a family together. Yet you are on this deep educational path like this profound radical shift and you're taking care of a kid who needs a lot. Yeah yeah. It's interesting that you said that here the politics to you are so important yeah, but it is not just the pollen

looks like this is. This is personal, that's right! That is right. That is right. It was our life too. You know at feminist talk about how you know that we talk about children as dependence, and maybe we think of our old, our aging parents as a different kind of dependent, but a feminist talk about the derivative dependence that that accrues to apparent meaning you become dependent upon the state. If you're thinking about your local public schools, you'd, be you become dependent on the capacity for child care if you're gonna keep your job, come it's all, just your child who enters the world who has needs. It is the family system, right of care and mutuality. There is a condition of dependence, and that is of course, the history of the world that is the natural and human, but that derivative dependence help me think through like wow yeah. I've got this child who it was. loved and wanted and whose story was being written in those in the past.

therapy office in the doctors office. People could only kind of see that the genetic mutations and not the the wonder of this human person and I started think about what it would mean for him to thrive in the future. You know and to be amiss fit as rosemary garland thomson that to be amiss fit in. That way is not to be. You know a broken body, but just to be at odds with the normal functioning. The world. So what is it the needs to change? Is it, no additions to the body or is it the structures of the world itself in that this? Does this the question that was law lodged in those early years, and so it was very poorest right, because I am in a an ecosystem of care with my son, that's for the long term right, and it took me a while to see that that's a human condition? That's a shared knowed, actually of experience it,

not the same right met. My if, if you know, counterparts of mine have children who will launch out of the nest and become economic units, had we know right that over the span of life, when chronic depression arrives for someone, you know your close circle when parents have needs over the long term and need you know, real support that dependence and the derivative dependence. Think I mean to be academic with the terms I think they give us something to hold onto that is that care is part of life right and and yet so much of the key to twelve education system. So much of the way that we structure jobs the way they talk about mobility and transience in Industrial cultures assumes a kind of atomizer self. You know and optimizing individual needs are meant to be. You know nerd,

word through to that- can become that the best self that they can. We think of the the individual unit and less in terms of care. So right, those those were the politics was really urgent. I started to see like oh you know in those early years with, graham, I would go to, we would go to you know, events that were organized by families of kids with down syndrome, and I would look around and think this is great that we're all talking to other ensuring resources, but knowing no one's hearing us right now at this? This world is not organised around these kids and and in fact, I remember and allay we went to a walk. Of awareness walk in the way that lots of awareness, locks and runs, and things are organised, there's a down syndrome, awareness. Why but we did it at an off season race track, so we walked around the race track. We were not in the public sphere, not at all. No one saw us we,

five each other in that matters. But you see what I mean they're ere. It was so I thought this issue right of what it means to be a humanity accounts enter to to be fit or not for the ordinary workings of the world. The echo comic lee ordered world. This issue is not actually on the stage. People are not actually paying attention and that was a lonely feeling, I will say right: it went on to seed, the most nourishing relationships, professional and personal, some the most nourishing of my life, and I could not have seen that then, but that was the way that it snapped together all that training to. In those questions yeah, I mean it seems the way you describe it, they're sort of there's an established cooked disability culture. You know which is different depending yelich. It varies all over the place. But but fundamentally you know, there's a defining ethos, which seems

ok. So we have one of two goals here: isolate or mainstream and there's not a whole lot in the middle, like there's the idea of yeah. But what if we can just exist as we are then the world to us yeah, that's right. Well, yeah! You have really named. I think what is a productive tension and a useful debate, but, as is their nonetheless, because disabilities so interesting right because it is actually does arrived, all of our lives. So we do enter the world quite dependent on other people. We do exit our lives, often with needs for extended care, and so you could say that disability is nothing more. Another less than needful nes right, personal and political. So that means it organizes all of us rights. The disability is a is a human concern, and yet in disability culture it would be a kind of act of erasure, people would say or that there would be a kind of resistance to and and understandably so,

making this kind of flatness about disability in everyone's lives, because if you're, not a wheelchair user, you are, you are facing the street in a different way than somebody who does use a wheelchair, and so yes, there are this ice later mainstream. Another way to put it is sort of like do we talk about the uniqueness of this group and its unique kind of political lobby and its unique kind of sets and its culture and its inner, its ways of beings is in the deaf community. This has been a long time in question. Right. Dewey, organ around deafness as a culture and in some communities or do we? How do we asked the world too flexible it structures and to say we're. Actually, the main in the mainstream is about connection. I mean this is really deep. You know the the the way that this goes, and I think I would. I just want to circle back to something that you said earlier, which is about the role and design of building empathy, and I actually think em He isn't quite strong enough a foundational goal for design. I want to say that it's not events

isolate or mainstream at this. What's our current? What's the thing that actually connects us, which is this this needful ness, and can we build than from that sense that I dont try on what it's like to be you and that emphatic way? I say? Oh I'm in a body that has needs their differ. needs from yours, but those politics. Those stakes are also mine. So now I'm interested where. The needs and where the modes of assistance? And how might we designed for that world? I think his interest in and the point that you may in a week. We also, I think so. Many people tend to make this distinction between yelling will, while their those people that are living with the physical or cognitive or emotional disabilities,

and there's us and that's the way they're going to be for life, you're right and then a tube and and I'm this way you really can enable his mentality right and rather than lick. I think it's a really fascinating reframe to say, okay, so what? If there's just a spectrum of needful, this yeah, you know and and and that spectrum is also not like okay, so you, you need x units of help, and I need to like your ten x, but it's just like no one the course of a given like life, is going to change radically that so, rather than saying. Oh, let me get involved in helping this problem or this community or this yearly population. It's a question becomes okay, so this. Actually it is personal if it's not now

will be yeah, but you know there's even sort of like a meta level to that. I think and I'm curious where were the signs with you, which is at the castle we're talking about okay, so maybe it's personal because you know in when I'm in my seventies, you know I'm gonna lose a certain amount of physical function, but so personal in an indirect way. I would imagine because, if we're not involved that the world is not built for all these people, you in a way that allows us to be in regular interaction with peter human beings that simply can't get into a room, because it's not built to allow them to get into a room where effected. Now today, we may not realize it because yeah like we, we can climb the steps, but on on a on the soul level, on a calculator, an emotional level, we we are being affected ourselves, also yup, it's true. It's I mean

winning you know that the human bodies, human minds, human, emotional, makeups and including right, the things that are hard for us and things that are are deep assets and gifts that those things really are present in every one right and I think, a lot of times if people are think about the ways that people talk about disability in terms of high functioning or low functioning that language there, we're so quick to grade where you land on how much help you need or not, instead of thinking. In fact, there are things did you know that my son, graham who will always struggle probably with mathematics and that abstraction there are also things his life- is replete with gifts I can at fourteen. I can tell you a list of people whose career choices have been affected by knowing him, whose daily kind of groundedness also depends on his connect, the gifts that he offers that are not available from other people, and I think there's this. Do we want to

organize a world where help is a part of it instead of running away every second, it's to say, I want a design, my own life's, that I dont need anyone right. I only need this maximal independence or do we look at o the history of humankind and say in fact that connection the giving in receiving I hope, the ceding of power right and the use of our influence like in alternate ways that we could we could occupy both positions getting in giving and receiving help. I mean that that could be a desirable world, and and also that that that we would be receiving gifts actually from all kinds of people. I mean my son in non cove at times goes to a saturday program, that's run by harvard steward it's because I live here in cambridge mass and sets a club that they run. So everybody imagines like. Oh what great you know like over the top achievers harvard students. You know like working with kids with developmental disabilities. I am quite sure that the giving and receiving of help is running both ways and those encounters and it's not like hallmark card it and sentimentalize it. I just I'm quite sure that

giving and receiving of help is happening that what my son graham shows up to these folks, who have been optimized to the K, twelve education system to land at a place like harvard he is offering them a different kind of social encounter. Fundamentally, and it's one of the a human and counter right. It doesn't have to be this kind of like special needs situation. So, as you say right, you can't that's. What's have asked me about the design of the built world. You can't get everybody into the cacophony of the street right. The city street we're gonna meet people, unlike yourself and you're. Gonna have these serendipitous exchanges with strangers. You can't have that if you can't get down the sidewalk, you know if you can build enough of an elastic city to have a big double stroller like I've had and and the elevators to make it possible when you're on crutches for six weeks and holding the hand of a young child learning to walk and that's. I think, a city that we wanna live in. It's not you know it shouldn't be so surprising, but I got you know from me: prosthetics unassisted technology. Far from being,

bout, this kind of special needs category and color. She was in cool technology. It's just It's just making assistance visible and unifying you know just calling it the material culture of life. So in the in the book I do say that assistive technology is a funny in a redundancy, rather as a tool to add assistance to technology, as though technology isn't dotted. It is it's it's reason for being, as assistance of that means that assistance is natural and normal to being human. That, for me, is a different way of

about empathetic design, but also about inclusion, and this notion of special needs like all of that language, I'm not here to police language, I'm interested in the ideas underneath that language and I'm interested in ways that a more flexible built environment gets us more kinds of human encounters yeah. I love that I mean, and what are we? We're looking for at the end of the day, have a richer human experience you know for for everybody, and that doesn't happen when everything is homogeneous. Everything is sorta like monolithic when we limit our interaction with people who you like, aren't anything that will we're seeing the the net effect of that on the world right now. It's I like the only people we will interact with are people just like us who believe what we believe and see the world the way that only we see it and will have

in else, and yet you were seen that one extreme stage right now, but just on a day to day lived experience level. He know the serendipitous conversations and bumping into each other and and interactions, but I also think that people think a richer experience of life. Jonathan. I think a lot of people thinking like yes, I want a richer experience, meaning I do work that I love and I write I'm happy in my relationships and I am able to be you, know, confident and secure at a reasonable level, and I don't think a lot of people in that imaginary have a richer life imagined that help could be part of that ecosystem, the getting of help for themselves and the constraint of help of having people in your life, who also need help that help might be

the constellation of desirable suit. I mean you're, not a thing to say well, in spite of that, I can have a rich life right. No, it could be that because of that I also have a rich life. That's what I think is missing from people's mental universe. In I so agree, I mean that we we live in a debt, the ultimate aspiration self reliance yeah. You know that the wealthier people get the further away from other people. They move. You know, ok, so a train rate. I got promotion. I got a big, raise, we're gonna go

bigger house, with more property farther away from everybody else. Why? Because that's what you're supposed to do when we all know that lake we actually close in a community that is the richest experience of your day to day life? That's right, but culturally! He liked the aspiration is move up and out and its more and more cuts isolation without realising that, actually what we're doing- and it's all about the more self reliant you are. You know that the more you win that the game. I am right and I think I made a surveillance, a home. You know really closely that? Some people cannot imagine my two nor typical kids who have their own very rich. You know interior lives, but they can't imagine that that their brother graham will feel like anything but a burden to them in adulthood. They can't imagine the rich friendship, that's happening between and among them now, and they can't imagine that that my two younger kids, who will have a more probably normative

self actual elation career prepared process that they can't imagine that there, the richness of their life might be in part because of not in spite of and knowing this person is it going to be easy all the time? Do we talk about that all the time, but I do ten years of of working alongside disabled people who build lives worth living with friction in them and barriers, and help have just shown me how to redefine what the good life is. Good gonna project is supported by name, so it's that time of the year, where a lot of oak start to think about their fitness schools getting their bodies moving myself included. I actually recently started playing a lot more attention to how I was fuelling my body and also really came to realize it. I was carrying a lot of information in my body and potential disease risk in the form of way. So I wanted and intelligent and sustainable and supportive way to increase my health lose the weight and info.

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and then clock and limbs about prosthetics. You know in the worn ordinary sense like replacement limbs and arms and legs and so on, and chair is about household products and furniture literally chairs, but also kitchen tools, indifference and then, in this room chapter that we look at gathered at university and deaf space, so architecture for deafness. We look at the history of the civil rights movement at you see lay in a hospital that became a dorm room and then we land, finally with steve sailing, who was here outside Boston, near where I am, and fourteen years ago, got a diagnosis of ale s and was trained as a landscape designer so when he got his diagnosis. Of course, like everyone else, he started watching the research for the pharmacology, the cure that might arrive amateurs through research, of course, all the time but he also did a kind of anticipatory look ahead to say can my body's mobility is gonna change. What is the lived environment, the residential environment, right wannabe? You know a decade

come now when my bodies movements are slow to almost total stillness, and that is that is his condition now and he designed together with software engineers, philanthropy architects, a residence for himself and two dozen other people, another opening, I think opened another dozen or so wing, a residence for folks with a lesson emma s, all of whom use wheelchairs and they in a kind of smart home arrangement before there were smart home technologies on the market so Steve, whereas on the bridge of the glasses that he wears there's a cursor planted on the bridge. To take a little add and talks to a wheelchair amounted tablet in front of him, and he directs it to do his text speech and play his his thoughts have conversations, but he also uses it to open the door

And some the elevators and turn on his media and h back and so on in the residents itself as a beautiful homelike environment and The thing that Steve really challenged me to think about. You know it s really tests ideas about what the good life is. I mean really does It is so, unlike ones, mobility if you can move, all right for him. It is. It is facial movement, a little bit of head movement now, but so steve would rejoice in and cure tomorrow a medical care. make all this design work go away. But at this in time he built a life worth living, they alive, he would say, is worth living and in fact he would say that technology is the cure in the absence.

that medicine and so what it means to then design a place where you can thrive in a fundamentally altered body. I mean what an idea you know it: it really that idea of what it means to dwell, what it means to be independent and interdependent and acutely dependent and steve's case, and yet to build a life rich semi he's as busy as he's ever ban, fundraising and meeting people, ensuring resources and dont interviews, and I mean he's just it's incredible and you don't have to tell a kind of like inspiration story to take seriously what offer there, and in fact I would rush to say, don't mixed even to an abstraction would like soft piano, music swell in the background that so often how disability is represented, instead to say what does it mean to dwell together and if my body were to change, would I be able to find some resources to make life worth living or can I they see steve

as a diminished state of normal right. We don't have to romanticize it to say, and we don't have to stop seeking cures to still say life worth living comes in all forms and that the the building of the shape of our lives can actually make a huge difference and and mold and be at em

loop around those lives. It's really quite something yeah. I mean central to that. It's such a powerful thing to explore. While you know what is life worth living and who gets to to define that and and of course, you're in their own terms, in their own way in their own context, yeah, but the young, the bigger lens part of that conversation. Also, is you if one of the things that allow somebody to say well, yet this will be a life worth living? Is the ability to build a certain amount of help of assistance, have liked to actually create the environment and the tools that would allow them to say? Okay, I can check this box neo part of the question zooms out to will. Let's talk about resources, let's talk about who's, making the decision that says that this one person's willingness to say this is a life that I say

worth waiting and it's gonna take a lot of resources and investment tat. It makes sense to allocate mine share and resources and money to develop all of these things yeah. You know to you That is where I think we start a circle back to what you are talking about earlier. That's political! yeah. Indeed it is and and its it it is the pernicious creep of an industrial logic that organizes all of our lives and our Is it not right because the alternative, in other words, yalta, two sang while there are lies at are not worth living their states and help that become. undesirable, a lot of that shaped for the idea that productivity and in that kind of normative economic mode, right, taxpaying citizen who can create, amount of monetary value and purchase property, and so on that

It is the measure by which we understand our self concept because of our worth to the state. You know in that way and, conversely, if a state is the palace, you know that is the the big house for all kinds of. Including the human experience of help, then that's a civic organization around every life around it kind, and I mean this tests again the most funding. what ideas about who and what people are right, what what their foreign and and who they arrive on this planet. To be, I mean it's you know, and we ve seen the again. The inverse of this with the current discussion around rationing and covered, be no color sources and so on? And I'm not here to sort of be ivory tower about it? You know I I've watched this play out all the time and and the the the good that the only good that most folks can dream about for a child like

I and graham, is a kind of mostly normal. How good have a job? Can he have? How high functioning of a job can he have that leaves aside, he may and that in all lobby, for it and all those things, but it leaves aside the question of what is a human worth. What is a life worth living and again steve living fourteen years into a diagnosis? Now most people can only imagine that a compassionate death is the is the right is that is the sort of right conversation for a less and if it is really challenging to think about what it means to be. You know a sentient purse, and to share than resources with other sentient people, and where is the line and what are they worth and how would you know and lots of people in polite conversation with her to say like our well, I'm not an economic productive unit like I would never employers scorched earth. You know econometrics to myself,

yet when it comes right down to it does the ones we often rely on, and you see it an older folks who lose their sense of purpose and connection when they stopped working, for example, because the worker identity has come to subsume a lot of the others. I mean. What's that, isn't it? The aristotelian idea of the good life or that of human flourishing is the capacity to play several different roles in the course of the day? right so in other words, were how that speaks to us in the twenty first century is the capacity to be something other than a worker in a meaningful way. In the course of a day yeah I mean to be fully expressed and have have have have him.

The fascinating complex life. It's as, as you are, sir Alan turing, more rescue story. I had this wash back, which surprised me when I was a really little kid. I lived in a neighborhood outside of new york city and my best friend's dad was diagnosed with m s. This is a long time ago, where none of the medication, the treatment that are around that can help, and it just didn't exist then, and his wife at the time. My friend's mom was a nurse and they made this decision that he would stay home

and he would sit in a big old barca lounger in in the living room and, and that is how he stayed as he lost function progressively my my the I had this totally wrong. My recollection, is he lived for a few decades in from much of that time. I'm all he could do was blank in terms of mobility and end like. I would ask you now on occasion- or I was told that probably later in life is more accurate, that he made the choice that no matter what simply being able to witness his kids grow up.

Does it yeah well well and seeing that witnessing we talk about causes of attention and rain, but like seeing their witnessing as a full life. I'm in the other two remarkable, and you know it. You know, I must say that so many other examples in the book are of people who are in less acute circumstances and who have intervened and change, and it will be interesting to know if that family would have done something differently and they would have welcomed better medicine right. They would have welcomed a redesign world and yet the story that you just hold its that it's, that inner transformation to saying ok.

Who am I without the doing the normative doing right, but will I look to when and if my body changes, and can I see the people in my life with different kinds of needs with new eyes because of those you know that shift its yeah it's foundational stuff and at that people get wrong. They think that disability is this kind of area studies that only matters if it arise topical way in your life or in like the technological lab of assistive technologies and disability What it really oxide is individualism. That's really there, that's the big cultural now that its, and so it really is kind of on offer to everyone. I do hope that the book helps people feel connected to those stories not again in an inspiration way and not in a kind of like oh. I am so grateful for my life way but to say Let us look at what the bodies doing all the time and look at

where the shapes of the world shift and change in and around it, and I'm just going to be watching I'm going to be watching differently to see how that happens and in a lot of people would shy away from visiting folks with LS, because I find it too difficult to see. But my dad was a family doctor in arkansas and he did teach me to sort of to be fascinated into to hang in there. You know and to walk toward that interest in people in bodies of all kinds, doing their thing, which is so apparent in both lend you bring to your work and also the fundamental notion of you, surely challenging and assembly desert and the heartbeat of of so much teaching to the notion that year, like the job as I had, we meet the world, but really it's no. Let's not assume anything. You know you yeah. You see examples of A man on a mass scale year like changes in the world, to make him it is the only curve.

It's these things where he thought a generation or two ago at it, or are you telling me literally like every corner on every curb in the country, as can be cut out? Never happen right near the dead and then extend that out and say well, you like what we really start to expand the way that we're looking at this and just behind how and how we're all intersecting with the built world and try and make it to accommodate anyone and everyone like what would that feel like if we looked at it that way or just that, we exercise the agency to make it bend and flex a little bit more right. I don't think that there is no bespoke universe coming for any of us. You know, but I think a lot of us accept the way things are, and we forget that actually the world is being shaped and reshaped all the time. So I take people on a little tour of just kind of their kitchen to you know, drawers and if you look at the you know, the oxo good grips am kitchen

What was that you have a pillar in your drawer? That's got that groupie rubber handle and it's got the finns in it. I tell you exactly where to put your thumb. It is beautifully redesigned, but that was if you're, my age are older than you remember what it felt like to have an all metal pillar in the way that is difficult to get the slip in the friction. You need to do to appeal a care for example- and that was a late eighties kind of redesign- also did groups around the condition of arthritis, so is difficult for a woman named betsy farmer to wield that. Can all, school pillar, and then you note with her entrepreneur. Husband was asking the world. Why can the status quo be different? That's the magical moment

Why can't it? Why must the status quo be the way it is, and there are so many people who I find are so wedded to this idea that they are the realists about how the real world works and right. It's regrettable that it can't be helped and I'm what I love is that design happens from lots of places and in lots of situations, ordinary tinkers in their living rooms, and also Entrepreneurs who go on to change the face of kitchen tools, but lots of people they're all doing the same thing we should say the status quo is not is not acceptable. I'm going to do something else that doesn't mean that the world magically will conform to me, but so I tell the story of that oxo good. peeler, but also the fiskars scissors that are this kind of gentle glide scissors right now, also designed for the condition of aging. They also make a more ergonomic tool for just doing ordinary sewing the cuisinart we in a food processor, when it was redesigned for home, use those paddles that you flip up and down as an ergonomic choice that was designed again with disability in mind as a

to officially knob that you'd twist this way and that the air and chair you must know those high status kind of economic chairs, designed also for the condition of aging and curb cuts. Yes, curve, but imagine one generation ago. People using wheelchair saying we want at go mandate, you know for every city in the world to cut that corner so that you have a diagonal between the sidewalk and the street and back up again and all the push the their god sang what a niche use of the street. We can possibly do this, you know, but if again listeners have pushed you know stroll or through a bicycle escaped board. Wheeled luggage, through the built environment, you're just your participating in those politics, but your So then europe passage is made possible if you were to use a wheelchair, short term long term at a different moment. From now on, your accompanying some, does that the state of the world in a civic way could be redesigned so so there's pre.

x in your everyday life. In his fascinating there's proper in your everyday life, chairs, kitchen tools and the rest, and also texture and interiors that are designed, like Steve's residents like gathered at university, deaf space texture is actually a really interesting little side story in that room, chapter about the signing starbucks in in washing deceived, near gala debt and starbucks, like every other starbucks, which are supposed to be homogenous right, there's must be recognisable and it's the subtle isp, the bull service design. We call it in my field service design, changes that make all the difference ass. I went in there as a hearing person. All the staff and employees are deaf and there's little easy, not a knife in a very highly waited to solve this issue, which is, I would write name down and the order that I want for my tea on a wipe away, tablet and handed to them to my payment and the automated credit card way, and then my name appears on a monitor down the coffee bar and so many people.

like. Oh designing a different world is so hard like. We can pass it so and go to the signing starbucks and it's like no. It was like a tv monitor and some like a stylus and a tablet. Anything and, and yet all the power dynamics are change theirs. If you go to the signing starbucks in d c, you're forced to think. Oh, my goodness. What else have I taken for granted? You know, or the dementia village in the netherlands, in vase from the netherland. right. We go in the street chapter, it's like if you were to get me and know that know that you're gonna, be you know, take on that other another difficult diagnosis, riches, alzheimer's or other d, How would you want to live and that there is a dimension village, this memory care lock

facility nursing home that is built in the shape of the street? There are streets in it and shops and a functioning restaurant and so on, and they did. It was state funding the way that other nursing homes have to obey state funding, but it takes that magical set of people saying the status quo is not acceptable, and now I'm gonna do all the labor and red tape and stuff that it means doing to see a new thing made real, and I just never get over that prototyping moment of saying it's not that the world is going to be redesigned so that it's perfect for everybody. It's not that it's that people always in a sort of people, are too rarely and yet in ways that people have the kind of vanished from their perception are doing. This adaptation work in this tinkering work and this reshaping of the war

well in lots of ways, and I want us to see it, that is that making it visible impulse. That's what the book is meant to do. Yeah I mean it's it's about acknowledging what got us here, yeah and then being unreasonable about saying: that's: what's gonna keep us going forever! That's exactly right, as I think this was one of the things. Fundamentally, I love about just the world of design is it's. It is fundamentally exalts being unreasonable and that yes- and I think it does that what you just said, I think, is that the dual work, which is to say, look at design. It is an index of ideas that are inherited right that got us to where we are as reset and it's this site, where you Actually, things are them that like, if you could see the materials gonna seem starting seam to to you, know, unbuckle themselves. It is the site where we can intervene and reshape the worlds. We will see what has been too

silly understood and assumed a world full of stairs right in big buildings, kind of those noble capital, buildings and gum. The buildings assumes that no wheelchair user will have a have cause to arrive right. I mean think about all that that's built on or that somebody will be a mother with a young toddler will not be scaling. Thirty steps in to go to the courthouse, whatever it is, and, of course we know But those are human experiences that belong in the built world, so we can see those buildings and think, aha, I know who was thought to be the city user. For that, and we can say, design actually belongs to everyone. That is a citizenship, practice and partnerships that are partly about products, and you know maybe the market and certainly about civic planning and and the city that we want and so on, but that we all it's it's a site. It's unfinished it's unfinished and unfit

it's under construction, that perpetual beta yeah, yeah yeah right that I mean you look at everything as that yeah yeah you could, or or you or you could find yourself on the tail end of that observed tweaking and and massaging the little bits and pieces of like what does it mean to experience a public park? That's really old, like here in in Boston and said the beta doesn't have to mean that everything only ever changes are enduring institutions. And so on, but that the reason why I read the book to be at multiple scales so on the body products, room street and then out to clock, which is more about where material design fails. We get more into systems is just to say, ask yourself if you, if you see the status quo, being unacceptable, ask yourself what would be the scale to intervene? You know, is it a better widget? Is it an app? Is it may be a building, you know, and those could imply

institutions that already exist, but our reused in different kinds of ways I mean. Needless to say, we are asking this right now under covert nineteen of architecture. Critic friend of mine, Alexander Lange, is writing these, like you know Urgent memos, you know on in with design journalism to city sang, get get your city outfitted right now for winter activities that bring people are, in other words, take a look at your status quo and figure out ways to re purpose. It structures does it mean starting over? It means editing what you have,

yeah. I mean it's so interesting where we're having this conversation in this moment in time where the question I keep here being asked over and over is like, when do we get back to normal, and the only thing that keeps spinning in my head is a normal was pretty bad for a lot of people and and b. We have right now. A using linen dials were brutal opportunity and from the past right, it is so hard for so many

People- and I absolutely acknowledge the pain that so many are moving through in this moment, and alongside that, you know on the societal level, we have this invitation to not try and get back to the old normal as quickly as possible, but to re imagine what do we want the future to look like, because nobody would have invited the level of disruption and dismantling that has happened over the last ten months yeah. But it's here you have a rather than trying to re mantle it making up words as I go, you know like what do we want to step into and create and in its place you know yeah that might be of service to more people at a higher level. You know and that's the conversation I'm looking for these days. Yeah it's true and I think I want to say that that is a multi dimensional process too. In other words, people don't have to think of it as just the return to normal or burn it all down at every start. It starts over now it

The combination- here's where again, where equality of attention is so paramount stories which are what are recovered ways of interacting that we want to recover that have been lost What are brand new ways? We want to interact that now we don't want to go away. Telehealth, for example, that's been needed for a long time, lotta just inertia about the way things are. That's been in the way of doing that. We're seeing it now made possible for a lot of people it's going to. We want to hang onto that and keep it with us. Shared streets are being prototyped and in little ways in the way that you should do piloted and so on, but I'm with you, I think what crisis makes possible and no one would wish it, but it does shift the frames and there with a ground. I don't eat our feet in ways that we thought had been fixed and permanently. I think the force of inertia is so powerful and now we're so

we had to be different. Oh what does that mean about what else? What else might be different and what were me hang onto what we recover, where we invent a new? What are we partner and reuse? It takes deep creativity and- and I loved thank you for also like shirley- reinforces that doesn't mean that were blocked. Yup everything that we can reclaim there's a lot of good you'd like, but in this space that we have here. He like the stuff that that that can be changed and you're like what. What is that you know I I I look at disruption as one side of the coin. You and you can have a one sided coin, so the other side is possibility, that's right like if, if you look at it and say okay, whatever level of disruption I'm experiencing right now

there must exist and equal and opposite said, possibility, yeah rag, then then your mind just too well, let me find what does that work like that's right arm, you know acknowledging that the disruption is causing paying. Yes, yes, and if I note that other quality must exist as long as I feel that they were working, what can we do with that? That's right, I'm fascinated with it. I I so with you and the related concept that I have learned and ten years of doing, research with disabled people in the realm of design has been to think about human experience and disability as yes

if the closures are things that are closed off so non normative experiences, the loss of a limb, the incapacity to see so their closures, real ones spoken about as such, and there are also openings always always always so something like when I let, when my blind friends are listening to their email on their laptop. The way they've adapted to listening to it is so rapid fire. The way they play it like tenax, speed or twenty x speed, I literally can't understand it. It sounds to me like gibberish, because they're they're listening so rapidly to that. So, in other words, that's the opening thing is that their brain went into hyperdrive to so that their capacity to orally process that sound actually went way up right. So in it's not just closing a door and opening a window. It's just that, as you say,

they're just are always, and that is that its stated, the body to be adopted at the state of culture and collective to also be inventive and adapted, and if we only see diminishment, we miss those. You know what I think are a knotty roy says: the pandemic is a portal. You know too, that what? What is that, What is that door and for me, the wisest resources for this work has been disabled people and so the folks who appear as subjects in the book. The folks have taught me things over the years. It's that closures in it. The things that I found so nourishing and wise frown life. The lowered. This feels like a good place for us to come full circle as well so sitting here in this container of the good life project. If I offer up the for his to live a good life, what comes up. yeah. I was thinking about this to live a good life. I think, a good life

choirs, the pursuit of a right sized vision of self So what I mean by that is a lot of times. We have either to small sense of what this unit is. This I in the world, so I can't possibly that change her. I don't matter enough to say my needs or whatever, or we have and over oversized sense of self. My needs are the only ones that matter. My actual you know is the is the kind of signal pursuit, and it seems to me that a good life is this like employing all these tools. Wisdom today. Sharon's people in our lives, books, study practices and habits, institutions and, more too far, that right sized. You know that sense that I have agency and I also belong in a much bigger constellation, that's bigger than me. Thank you.

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