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Future Brunch Episode 8, with Technology Humanist, Sara Hendren

What does it mean to be 'normal'?

Angus Hervey

Sara Hendren is an artist, design researcher, writer, and professor at Olin College of Engineering, and the author of a new book called What Can A Body Do? How We Meet the Built World. Her work includes collaborative public art and social design that engages the human body, technology, and the politics of disability. In this conversation, she joins Future Crunch co-founder Dr Angus Hervey and Future Crunch facilitator, Shasta Henry, for an inspiring exploration of what it really means to be human (the answer might surprise you).

You can watch the recording here, and there's also a full transcript of the conversation below.


Gus:

Good morning, good evening, good afternoon. It's brunch somewhere! Wherever you are, thank you very much for joining us. It's great to have you here today. My name is Gus. I'm a political economist and a co-founder of Future Crunch.

Shasta:

My name is Shasta. I am an entomologist and an invertebrate ecologist. I am a Future Crunch facilitator.

Gus:

We have got a really great conversation lined up for you today. Before we get into it though, we just want to acknowledge that we are broadcasting, both Shasta and I, on the traditional lands of the First Nations people of Australia. Where I am, these include the lands of the Bunurong Boon Wurrung and Wurundjeri Woi Wurrung peoples of the Eastern Kulin Nation. Their name for the place I'm in, Fitzroy, is Ngár-go. We respectfully acknowledge their elders along with the Indigenous elders of this entire continent and its islands.

Shasta, where are you broadcasting from?

Shasta:

I'm in Tasmania, so I am in Lutruwita, the traditional lands of the Palawa people and continuing lands of the Palawa people. There is snow on Kunanyi, Mt. Wellington, over Hobart this morning, which is always beautiful, and a bit surreal, as we attempt to make our way into spring here.

Gus:

Wonderful. We're all part of this land, the land's part of us, so we invite you to join all of us, wherever you are, in learning about, growing with, and protecting the land and all of its beings alongside our Indigenous communities, not just here in Australia, but across the entire planet.

Today, we are speaking to Professor Sara Hendren, who's joining us from Boston. Sara, good evening.

Sara:

Good evening. It's so good to be here. Thanks for having me.

Gus:

Thank you so much for joining us. We're really looking forward to exploring some of your work, and we really appreciate you taking the time.

Sara:

Let me just add, too, that I am on the un-ceded territory of the Massachusetts people here in the area of what's now known as Boston. But I thank you for that land acknowledgement and I join you in honoring those elders.

Gus:

Thanks Sara. So, we always start these conversations with the same question for our guests - what has surprised you the most about 2020?

Sara:

What has surprised me the most about 2020? That acute situations of despair and danger have failed to unite more than they might have. I mean, history shows as much unification in moments like these as there is disunity. So while disunity is also in history, I must say I'm astonished at the lack of that joined together impulse that I've seen happen in my own adult lifetime and that I've certainly seen in historical periods. And we have to be specific about that and not nostalgic about the past. But boy, I've been quite surprised at how tenuous the ties have been, honestly.

Shasta:

I think that somebody managed to humorously hit the nail on the head when they pointed out on the internet commentary that the zombie movies always failed to illustrate the people standing out in the street demanding their rights getting bitten by zombies.

Sara:

Oh yes.

Shasta:

Has your work researching people, in very broad terms, has that given you any insight into what has happened to us this year?

Sara:

Well, my book is bringing together a translation for a non-expert reader in the deep field of disability studies, which is part of my training. And that is mostly disabled scholars themselves writing from their own experience but also in their histories and also in scholarship and understanding what disability is as a lived experience. I've been a student of that for a good decade, and then a lot of the stories are bringing that stuff together.

And I will say that the deepest, most profound knowledge and experience that disability studies brings and offers to the world is this fundamental notion of human interdependence that is a real rebuke to individualism, to the self as a productive economic unit only. We needed that message and that insight and that wisdom before 2020. I think it's fair to say we need it especially now. Disabled people have been saying for a long time that the needing of one another, that needfulness, political and personal, is actually a natural state of the human. And the more we make that actually visible and unifying and organize around it, then the more desirable worlds we get.

That wisdom has been on offer for a long time. I will just hype a friends book, Alice Wong, who often says these days that disabled people are kind of modern day oracles when it comes to 2020, that is that everything from needing equipment to doing social distancing and planning for your body in ways that don't match the built world, but then also the incorporation of help and mutual aid into normative life. And unfortunately in my own country, we are not able to organize around that for any number of historical but also very present reasons.

Gus:

I want to take a step back, and look at this word, disability. It's quite loaded. What I love about your book is that you're really trying to use that language in a different way. And there were two words in particular that really stood out for me. One was disability - challenging the meaning of what it means to be disabled, who or what is disabling who. And the second was the idea of a misfit, the idea of not being fitted correctly. I wonder if you could tell us a little bit more about both of those words and the way that you view them: disability and misfit.

Sara:

Yeah, absolutely. So I think we're in a time when language is a subject that a lot of people negotiate and argue about, and we can talk about how that's of our moment in a particular way. But in disability, for actually a couple of decades, certainly in the US and I think in other parts of the world, a contingent of the disability activist community would actually claim disabled as an adjective for their lives. The book opens with a woman in my lab at an engineering school, named Amanda, who is a little person, has a form of dwarfism. And she would call herself disabled. This was surprising, of course, to my engineering students, who are non-disabled people. But she would call herself disabled in the way that many people that I know who are disabled would also use that word. They would not call themselves specially challenged or differently abled.

And the reason is a politically strategic one. In the last couple of decades, disabled people have realized this is a good idea for a couple of reasons. One is an insight into disability studies - that suggest you can think of disability as a medical condition. And of course, plenty of disabilities are, actually, yes, scientific medical conditions. But the way disability happens in people's lives isn't just about the properties of their body. So if somebody's using a wheelchair, their legs do not ambulate in the built environment, right? But a wheelchair is a perfectly useful way to get around, it's that the world is actually full of stairs that make it impossible for a wheelchair to navigate.

So then it's like, "Okay, I have the fact of my legs, but I also have the fact of the world," and that's where the actual disjuncture is happening. That's where the friction is. So the disabled have said, "You can have a purely medical model of disability where you just think about what's happening in the body, or you can also take on a social model of disability." And this changes everything because what that means is that disability actually lives between this body and this table, and this chair, and that street, and that step, and all the curves in the sidewalks and all the built stuff of the world. So literally, the location expands our vision.

So disabled people have said, "I'm disabled not because of the way my legs work, not because of my stature or my height, but because of the way my body doesn't match the standardized, built world. That the world is full of stairs, that is disabling to me, and therefore I'm disabled." You can imagine, right, that this is politically strategic in order to make common cause with people who have all kinds of bodies that are at odds with the built world, so blind folks and deaf folks and folks in wheelchairs. Their bodies are not the same, but to use the word disabled is to say, "Well, the world is not built for everyone." That's a profound and sharp political statement for lobbying purposes, to say, "We actually want a world where the match is actually better."

Then the second word that you mentioned is actually from Rosemarie Garland-Thomson, who is one of the founding scholars in the field, so I talk readers through her idea of the misfit. And this is another way of putting it, which is to say, if I'm a misfit, I can think of that as something that's my quirkiness, or I can say, "I'm a square peg in a round hole," meaning, in that same way, my body doesn't go up stairs. So I'm a misfit. But the misfit is not just something, a property of mine, it's actually between me and the world and back, right? So it's a multidirectional thing. The question becomes, do I need a better body or do I need a better world? And that's a fundamentally different question altogether.

So Rosemarie Garland-Thomson who coined this term of the misfit, she has two very atypically shaped arms and hands. She doesn't grasp a fork or a book or her iPhone or anything in the way that a two-handed person like me does. So she thinks about this all the time, that she is all the time navigating, negotiating, adapting her body, but she is also, as a scholar and as a thinker and as an activist, asking for the world to flex and bend its structures toward her a little bit, too. And by the way, she has found that in things like even a smartphone, right? Just speech to text, it's quite extraordinary for a person who's trying to negotiate the world.

The book is trying to, again, just translate what's been happening in this rich field of disability studies for a long time. I'm just shining a spotlight on it and telling you that disability is a concept that is really rich, fertile ground for each of us, no matter what body we're in, to just rethink who is the world built for, and where is the friction in the life that I live and the ones of my loved ones? And I'm talking about people living with acute depression. I'm talking about people with slightly diminished balance just because they're getting older. I'm talking about conditions that people have not really thought of as quite generatively organized around this idea of disability, which really is a universal and fundamental part of life. So both misfitting and disability, they're not the same, but they are on offer as a form of knowledge and wisdom for us to go, "I'm going to rethink where is the locus of the misfit and what's the world that we want?"

Shasta:

I was really energized by that concept. It's at least a 50% onus on the square peg and a 50% onus on the round hole, it's not only just going in one direction. I don't know if you've been specifically working on implanting this idea, but the first thing I thought of is that it really turns disability into a spectrum that everyone then fits on, even hitherto able-bodied people.

Sara:

Yeah, that's right.

Shasta:

I thought that was really interesting. It gives you that opportunity, or it gave me, maybe, a window to look specifically look at my world and understand it perhaps in a similar kind of frame. I was interested in how you seemed to create that opportunity to feel a greater sense of connection with the concept of the disabling world.

Sara:

I'm so glad that that came across, Shasta, because I think a lot of times conversations like this are about a fairly paltry idea about inclusion. And I'm not against inclusion. No thinking person would be against inclusion. But I think actually, again, having studied the work of so many others and having done so much design work of my own, and I also share life with a son who has Down syndrome, who's 14, I have a number of family members on the autism spectrum, and who have lived with chronic depression for decades. So I am thinking about this in my own little ecosystem, too.

When you're saying my invitation to the reader is to find yourself connected there, you're right. It's not to say, "We're all disabled." That would be a lazy thinking answer. But not also to say, "Oh, I belong to the land of the able-bodied, and therefore my role is to be inclusive, to extend the social and political goods of the world, extend the canopy of those and to welcome in the folks who have not been before." Actually, in disability, the invitation is to go, "Oh, I live in a body that has needs, that is extended with stuff all the time." I mean, what are these reading glasses if not assistive technologies for my changing eyesight? And what is my so-called smartphone, the things that I outsource to it, the ways that it elegantly fits into my life, the things that make me less of a whole human being? It's a rich, complicated ecosystem of assistance.

If everyone, no matter what, sees themselves as on the giving and the receiving end of assistance, that's a different social organization. That means we belong to one another in a different kind of way. So more than inclusion, I'm hoping that people say, "Oh, I live on that same human plane of this body with its vulnerabilities, with its needs for assistance. And that can actually be a dignifying and even salutary part of my life." Without romanticizing it at all, but dignified and salutary, nonetheless.

Gus:

And it's also very, very human! Here is this stat that just blew my mind in your book, which was that the World Health Organization says that about a billion people, 15% of the global population, live with disability. They define disability as people whose operation of body or mind falls outside the canopy of what we deem as normal. So can we talk a little bit about this idea of what normal is and maybe how we recast that?

Sara:

Yeah, absolutely. And that's a report, so folks know, from 2011. That's a fairly recent number, and I think everyone was surprised at just the sheer scale of that.

Gus:

It's amazing. It's the most human thing possible to have your operation of body or mind falling outside the normal.

Sara:

That's right because, again, if we think about aging alone, then we know that it is a human concern to think about the difficulties and needs of our body in our lives over the lifespan. The idea of normalcy certainly in industrialized cultures that have been organized around technology pressed into the service of markets and market economies, that idea of normal belongs to the social sciences and really arises as a social science only about 200 years ago. So when you go now and take a young child to the pediatrician's office, you will invariably be told, "Let's measure their height and their weight and let's then rank them on a percentile scale of where they fall relative to other children at that age."

And we do this not only in a pediatrician's office, but in high stakes testing all over the world. We rank and sort people based on percentiles. And again, the measure of worth is that looking from here to here, compared to whom, where do I fall? And you can imagine, of course, that the social sciences of statistics are quite useful for us in lots of situations. We do want to understand populations as groups. So we want to understand where the key features and behaviors and patterns are.

Shasta:

It does sound dramatically dystopian at the same time.

Sara:

I know, when it's put that way. And what social scientists call this is the aggregative fallacy, meaning numbers in aggregate themselves, again, are not evil. We understand the uses of studying groups as social sciences. But the aggregative fallacy is when we start thinking about ourselves in relation to other people as the sole measure of our worth, and also when social sciences are then thrust into the service of creating incentives for citizens only to function at those high levels and those competitive levels and to find, again, their worth in comparison to one another and to be sort of high-functioning in those economically productive ways.

Sara:

In other words, normalcy comes to take on, over the 19th century - I talk about this in the book, and there's a whole realm of scholarship about this - normalcy comes to take on not just the measuredness of comparison, but the better genetically or performing side of normal comes to take on the heft of better and best. It starts to become, especially in the eugenic era, in the 19th century and early 20th century, in my own country and elsewhere, it starts to take on not just a kind of measurement, but a goal to try to be optimized and achieved. And so you get a whole discourse of eugenic logic about trying to optimize and perfect human populations. And we know how ugly this got in the early 20th century.

The long history, of normal, perhaps the ugliest mess of that eugenic logic is behind us. Nonetheless, there's a very long tail and a very naturalized sense in which we measure our worth and the worth of others in terms of those performing, optimal citizen work. And again, high stakes testing is the classic example here. We want to rank people so that then they go to the best colleges they become, what? The most valuable workers in the quick processing of information and tabulations.

You can imagine as a parent of a kid with Down syndrome just how vivid this becomes in life, where here is a person who's misfitting, who is in this round hole, square peg conundrum, which is not actually about a missing limb, and not actually about a sensory difference in terms of blindness or deafness. It's about being a misfit with the economic order. That's what it is. To have non-normative intelligence is to not rank in that normalcy range that is optimizable for productive citizenship.

So listeners who are joining us here may think, "Well, that's terrible. Every person counts and so on." Fine. But if the ground of human worth is not that kind of normal measurement, then what is the ground of human worth?" I mean, this again is a difficult question that I think disability forces us to ask. What is the dignity of being human if it isn't that kind of productive citizenship and the percentiles and the high functioning?

Shasta:

You're making me think. I'm really interested as a biologist how our human evolution from the thousands and thousands of years that we've been roaming savannas and poking things with sticks, is the direct bedrock that our modern-clad lives are trying to balance on. And I think you're highlighting, again, how some of that tension comes out of our animal nature. Disability 200 years ago, as you said, pre-Industrial Revolution, would have been a completely different thing. The assumptions about all of our lives were completely different, although I suppose disability in those times would have potentially been less prevalent because you had to be the single most successful human to be part of the human population, as in survival of the fittest kind of thing, hopefully not in a value judgment way.

Sara:

Yeah. Well, it's complicated, right? I mean, this is where history gets really deep and specific, and we'd have to go back to where are we talking about and for whom? But yeah, go ahead.

Shasta:

Not only with attitudes, which I think we were just talking about, with attitude changing the landscape of disability, but also technology, must be having a significant impact on the landscape of disability. At Future Crunch we love technology. We love talking about technology. We can only presume that the people who are still here with us must love hearing about technology. So is there a few real gold nugget pieces of tech that exist now or that you see coming that are just really making an awesome, exciting impact in the accessibility sphere?

Sara:

Yeah Shasta, but I wanted to just pick up on this thing. When you were talking about, "ever since we were wielding sticks," were you talking about the universalness of tool use?

Shasta:

Yeah.

Sara:

Because I think that's also really interesting. In other words, if I say, "Well, this is the modern equivalent of assistive technology," basically, it's just a redundancy that tools are giving us help. And there's a reason why one of the characteristics we mark civilization with is at the moment that we see tool use. It's not the only one. Being social and socially organized is a really important factor too. But we do mark those tool use as a fundamental way of how we organized and planned and executed the things we needed to get done to nourish ourselves and to defend ourselves. So tool use and assistance, again, is fundamental to being human.

In a decade of study, what I've been interested is technology, but not in the breathless celebration of post-human cyborg technology that I see everywhere. The story here is that if you lose a body part, then the best that money can buy will swoop in and strap on the replacement arm for you and will catapult you, then, into the future. And you need not think of your body as either vulnerable or fragile in any way. And indeed, the promise is there. But remember, in that story, built with all of its assumptions the technology is actually the protagonist. The technology comes into people's lives and then makes a different life.

Shasta:

Yeah, and disability is still the enemy.

Sara:

That's right.

Shasta:

"No, no, you're not disabled. You've got a super arm. You're better than before." It's like this assumption that it was negative because your economic value is now deflated.

Sara:

That's right. And again, just from studying so much in disability studies, you enforce an idea that you have to overcome the body, that you're not defined by your disability. All of that just keeps putting the impairment and the stigma back on that person and making it their job to, again, overcome that normalcy mindset, to reassure everyone else. I'm not just interested in critiquing that, though. The book is full of counterexamples where I think the story gets really, really interesting. It's organized in multiple scales, and I do look at prosthetic limbs, and I hang out for an afternoon with a man who has an $80,000 arm and I look at what he can do and what he can't do. It's really quite something.

But we also drop in, in that same chapter, on a man named Chris who was born with one arm. He has a residual limb on one side. And for whom half a dozen prosthetic limbs were built for him when he was a child, and the doctors told his parents, "Certainly, Chris will need a prosthesis. I mean, how could he not?" But Chris, like a lot humans, deeply, deeply adaptive. And any of us who was born like Chris was would be equally deeply plastic and adaptive with the one arm. It's the only thing he ever knew. So at the same time that the doctors were saying, "Let us build you this arm," he was taking a couple of LEGOs and he would scoop up two and race one against his shoulder and snap the other one on top. And he was a little toddler.

So they said, "Here's this big arm," and it was just like a total albatross. It wasn't a useful thing. To me, that's really interesting. I should say, we drop in on Chris at a moment where he actually is doing what tends to be a two-handed task, and that is changing the diaper of his newborn baby. And when he did hit that moment in this 30s, he thought, "Well, I do need to have an adaptive tool," so I have a picture of him in there with this little $10 harness made out of felted cords that he uses to actually suspend his little baby's ankles so that he can change his diaper one-handed.

And to me, that returns us to the fascination of the body, the universality of adaptation. So that chapter says yes, here's Mike with this incredible arm which, by the way, is a legacy of World War II and the rehabilitation engineering; huge amounts of research dollars poured into the innovation labs around giving back those men, because it was all men at that time, the limbs that they had lost. So we place that in historical context. But we meet Chris, who has opted out of prosthetic limbs, and we go to India to look at the Jaipur Foot, which is a low tech prosthetic lower leg limb that's been produced and distributed for free at the scale of a million and a half.

So all of that limb chapter is this super faceted, turn it like a jewel, treatment of what do we mean by an extended limb? And what are all the forms it could come in? And some people opt in and some people opt out. And all of that is to help the reader say, "If and when my body changes, what are the choices that I'll make, and what are the resources that I'll marshal to help me make those choices?"

So we meet Audre Lorde, the great prophetic essayist and poet on race and gender and so many topics. We meet her in the doctor's office after a mastectomy. And she was also opting out of the replacement breast prosthesis. And she learns that the nurses are invested in her actually wearing that. They don't want her to be in that asymmetrical body.

She's just glad to have survived the cancer, and then she's getting these messages, "Wear the prosthesis so that the rest of us can feel good about who you are." This is what it means to be biopolitical. And the mask, of course, is our most biopolitical object right now. But all prosthetics, all assistive technologies, are telling us a lot about what we think of as the normative body, about gender, about achievement, about all those things.

Gus:

This is one of the things that I really love about your book, Sara. It's been a long time since I read a book that made me look at the world so differently. Even today, on my way into the office, I was looking at the sidewalks differently, I was looking at cars, I was looking at shops, looking at the steps differently too. It's really great. One of the objects that really caught my attention was chairs. Let's talk about chairs, and let's talk about chairs and cardboard, in particular. Tell us more.

Sara:

Sure. So the book is intentionally structured to expand in scale. That limb chapter that I just detailed for you is all about the closest stuff we wear on the body. The next chapter called Chair is about the products and furniture in our lives. The next scale out, of course, is the Room that we live in, so architecture and interiors. The next scale out is Streets and how we get down the road and being public. And finally, the last chapter is called Clock, which is a conceptual object about time, what happens when we misfit around time. And there I get into a little bit to developmental disability in my own son.

So, right, the chair, we've sort of left behind these objects that we wear on our bodies with limb, and Chair is a look at what's called universal design. So probably, people who are in tech on this call, if they think of disability and design, they either think of those really cool $80,000 limbs or 3D-printed prosthetics, or they might be thinking, "Oh, you mean universal design, right?" Universal design is what gave us closed captioning, for example, so deaf watchers of television were lobbying in the 1980s for closed captioning to be built into the TV set that a lot of people use now. Before that time, you had to buy a little box that would then attach to your TV.

The legal structure here in the United States changed in the late '80s so that now when you buy a TV set, it is just packed with closed captioning, full stop. And that was a hard won legal fight that lots of people thought was for a specialty niche audience, they thought that only deaf watchers of television would use this. But I bet you anything there's a statistically significant number of people on the webinar who are hearing folks who watch TV with their captions on. To say nothing of the fact that when you're in the airport or in a restaurant, you're watching and following the debate or the game or whatever from across the room because you can see the words, and not just even when you're out of earshot.

So universal design is a logic in design that says, "Go actually to margins of experience, so at those tail ends of the bell curve of normal. Go out to those margins and in those margins, you will actually find insight into human behavior and needs that actually benefit everyone." So that's an all ships rise kind of design logic. For instance, beyond closed captioning, do you folks have the OXO Good Grips kitchen line? Black rubber handles?

Gus:

We know what you mean. It's those big chunky handles for various kitchen utensils, yes.

Sara:

Yeah, those ergonomic handles that have the black chunky rubber that are easy to squeeze and grip, and they also have little fins in them that tell you where to place your thumb. These were originally designed from the condition of arthritis. Again, somebody was saying, "Why is this kitchen implement so hard to use? It doesn't have to be this way." And from that, you get this entire paradigm shift about what a kitchen tool should feel like and do.

Universal design. That's also a behind the Aeron chair, which is this very fancy high status chair that people may know where you can do any number of things with the tilt of the seat in the back and the height and the armrests, and so on. So universal design, again, is thought of as the one and only story about where disability and design matters, meaning only if you can get a widget that scales to 100,000 or a million will it count and be worth your time. That's a 19th century model of manufacturing, so we could talk all about that.

However, right up next to the Aeron chair which is, again, this widget that's mass manufactured, I take the reader to a storefront in the Garment District of Manhattan where chairs are being built every day out of cardboard, triple fluted cardboard, so I can actually show you an example.

Shasta:

Oh, yes.

Sara:

Triple wall cardboard. I love that I have this one here. It's taped over now, but this is the thickness, triple wall, meaning three of those sheets of cardboard that have the little curly things called flutes in them. And flutes are quite strong and they're stacked in this thing so that they run this way. They act like rebar in a building. So triple wall is actually ...

Shasta:

Is that a stool?!

Sara:

They make a ton of these, actually. Every height, customized to the quarter of an inch. And they do furniture, tablet holders, wheelchair adaptations, fittings over other standard chairs for kids all over New York City with disabilities. And they do that for a fraction of the cost of mass manufactured tools; not instead of those tools, but they do this design for one person, repeatedly and over and over in order to account for the fact that a child's body changes every six months, right? To stay right at the cusp of their development, and also to build from their desires.

So they've built for a kid, let's say who has non-normative legs, is trying to reach their desk at school. Okay, maybe there's one standard chair there. But at Adaptive Design, they will, out of this stuff, build the fitting that goes on the cafeteria bench so that they're sitting now at the right height at the lunch table. And all the difference that that makes to that child's social development in addition to their learning.

What I try to show folks who are obsessed with this idea of 19th century manufacturing and scale is that the Adaptive Design Association is doing bespoke, design for one, over and over and over. They train people all over the world. They have a video library on their website. They're doing what Ezio Manzini, the Italian design scholar, calls diffuse design. So they have a mode of manufacturing with this very low tech material in the global supply chain, put together with very accessible and affordable joinery and dowels and ordinary glue. It can be built in any part of the world. And they share knowledge that then is networked by digital sharing.

So that's a fundamentally different way of thinking about what scale is and about what are the desirable objects in our lives and where would they come from? So if folks are on the call and they're engineers and designers of any kind, we're taught to say, "But does it scale? That's a clever idea you have there, Sara. Does it scale?" Meaning, can I, in a 19th century way, make a widget that will arrive at under $10 in a big box store?

When it comes to those kitchen tools, you want them to end there. But is that the only thing that you want to put your energy, your ingenuity, and your efforts behind? And I think the answer is no. I think in a 21st century, distributed manufacturing, digital fabrication universe, why would we hang onto that old idea? Why don't people see this stuff as innovative and interesting, why? A lot of reasons. It's because it's the world of special education and the world of women, who are occupational therapists and who are doing this sort of masterful carpentry. But because it's associated with kids, they think, "How heartwarming. How rewarding. Too bad they're not in the lab down the street doing the real engineering work." So I was quite determined to write about this in the context of that innovation.

Gus:

I think you summed it up beautifully. You talked about Alex Truesdell, the former executive director, I think she founded the ADA. She said, "If you build for one, and you change everything."

Sara:

That's right, that's right.

Gus:

What a beautiful idea.

Sara:

Yeah, because she says that there are lots of people in the world who have misfit bodies. There are lots of people in the world who actually do know how to build stuff. She says the people who are missing are the people in the middle who are enfranchised to say, "Can it be different than it is? Can it be different?" So build for one and change everything, meaning you say, "The world as it is will not suffice. I am going to get in there and intervene."

She says that's the rarity because so many of us are habituated to think, "Well, it can't be helped. It's a tragedy, but it can't be helped," or, "I'm going to be the inventor of the thing that has to scale and go to the big box store." But meanwhile, there's all this incredible creativity, urgent creativity available to us.

Shasta:

This is a question I really wanted to ask you, and I think it's come up in the background of a lot of the subject that we've discussed already, which is that able-bodiedness, as it's viewed as a capitalist concept... your ability to participate in product creation, yourself as a product, and your productivity... Gus and I have discovered that we were on really different sides of an argument last time we did Future Brunch, when I brought up and shared my enthusiasm for the concept of universal basic income. I presumed that you'd have an opinion about it, with the inclusivity sphere.

Sara:

Yeah, and I see the connection you're making, which is like, okay, if assistance is universal, and if human worth could find a ground that isn't about being a productive citizen in a certain kind of salary-making way, and so on, then isn't that an argument for UBI? A lot of people I respect are with you, Shasta, on that, and I just haven't done enough research to really understand what are all the scenarios about that particular kind of policy in particular contexts.

But I will say that it doesn't take a very radical political imagination to get behind forms of assistance. In Australia you have far more even than we do. I live in a kind of scorched earth time in the United States around forms of just investing in neighborhoods, just investing in public education, just letting old age actually be dignified, cared for, a worry-free moment of your life. So in other words, you can fall on every gradation of the spectrum about do we burn it all down, is capitalism inherently corrupting, is there no way out of this transactional mode of life? You can fall on that quite radical end of the spectrum. You can also fall on a quite reformist spot on that spectrum and say, "I'd just like to organize around some more assistance."

But I do think that UBI, I do think has at its core this question which remains unresolved for us, which is what is the dignity of consciousness? What is that? Where would we find it? How would we locate it? I mean, the eugenic logic that I mentioned before, we can look at history and sort of think, "Well, we certainly aren't like those people." And yet when it comes right down to it, around things like allocating ventilators for folks in hospitals and things, and all the scenarios that we had to play out this year, you see use value of human beings being played out in every one of those conversations. It's so tacit. Whose lives are worth living? Who has a high quality of life? How do we grade that and know? Who is independently fit to actually make that judgment?

Shasta:

This constant process of triage, triaging everyone all the time.

Sara:

That's right. And I see why people are going to be like, "Oh, what an academic." I see why people arrive at use value. It's in the air and the water that we breathe, use value as a metric. We don't want it, but gosh, when it comes right down to it, we really do, right? The question is alive and heartbeating in our world, which is, again, I just would submit to people, what is the dignity of consciousness? If we're not going to be measured as workers, how will we be measured, and how would you know?

These are humanistic questions, and absolutely resist technological analysis. They are humanistic, global, wisdom tradition questions: why are we here, what do we owe to each other, what is a good life, what is happiness, what is wisdom. If we're going to grapple with it, we have to actually go that far. So I think UBI scares people because it goes pretty deep. It goes, "Hmm. How can a person be, and how can they be respected as such?"

Shasta:

That's a fantastic answer to my question.

Gus:

Sara, one of the tensions that's in this book - it's both a tension and a theme - is that individuality and collectivity, the one and the many, both of those ideas actually make meaning in our lives.

Sara:

That's exactly right. That's exactly right.

Gus:

It runs all the way through your book. It's such a different way of looking at it. I've got a question here from Jan, who is one of our Future Brunch regulars. He's asked a question. He said that he comes from a computer studies and computer science background, and he studied assistance technologies in the '70s and '80s. He says that for him the big challenge was actually about implementing the technology into people's lives. And this was way more tricky and complicated than in traditional business or science. Can you talk about what it's like to implement technology into people's lives? And can you talk about it specifically in the context of deafspace, which I think is just such an amazing concept and really blew my mind.

Oh, sorry. Jan is a she. I'm so, so sorry, Jan!

Shasta:

Yeah, I'm picturing a French man, sipping coffee. Now I can picture a French woman sipping coffee.

Gus:

So that's Jan's question. Can you answer it in the context of deaf space, and maybe talk a bit about deaf space because it's one of my favorite things in the book.

Sara:

Yeah. Well, I think, Jan, you may be thinking that adoption valley that has long plagued assistive technologies, especially when they're developed in the lab and not proceeding from a human-centered design logic. We have a huge number of technological developments that are, in an abstract way, designed for assistance, but they don't actually have people in their lives doing that user testing way upstream in the design process. So you may have been thinking about that adoption gap, which is where a lot of things fall off a cliff. Why? Because people are radically adaptive and they do lots of stuff in their worlds that if the thing doesn't really come from this hunger for that gadget that's going to arrive at the right time, you just get a lot of people going, "I just don't have time to make this work."

So there is that. And I do think that human-centered design has in the last dew decades become much more the language and the vernacular of labs and studios. In part that's thanks to the big design firms like IDEO and a human-centered design process, meaning that it starts first with ethnography 101 and anthropological ways of interviewing people but not just in a yes/no way, being in their lives shadowing them, asking what they're after and what they really want.

So I do think, in the very broad strokes I'm painting here, that does actually solve some of the implementation gap thing. I will just refer back to Alex Truesdell and what I mentioned before, which is the absence of the question asker. I think sometimes folks who are on the receiving end of assistive technologies from the experts in the lab feel obligated to say, "Thank you." I have a story of a family in the Chair chapter who's sort of like, "Wouldn't it be rude to say it's not quite right? Wouldn't it be ungrateful to meet this technologist and say, 'If I'm honest, it's not really the thing that I wanted,' because here they've spent all this time doing it."

So you get those social dynamics. Now, the Institute for Human Centered Design here in Boston has what's called the User/Expert Lab, and so people are paid for their time to come and try out your app when it's in beta rather than going like, "Here, we dropped you a widget, a plug-in, something that we don't even actually know if it comes from your life."

To get to deaf space, so in the Room chapter, it opens with a scene at Gallaudet University, which is in Washington, DC; was chartered by Abraham Lincoln, actually, in 1864. Deaf education has been around for a long time, including waxing and waning with the politics of identity and also eugenics and so on. It's a fascinating history. Gallaudet is an all-deaf or deaf and hard of hearing campus. So students go there, some of whom these days, like a statistically significant number of students, are new to Sign. Sometimes they've been raised not to be signers but to lip read and do other kinds of work arounds. They go to Gallaudet in part because they want to join a signing community.

So Gallaudet, as a result, is a built environment that is entirely organized around deafness, which is to say it is not interested, actually, in the condition of hearing. My engineering students find this impossible to believe. But in fact, though plenty of people there are wearing cochlear implants, the goal there is not to actually meet the square peg, round hole thing. It's not to meet the norms of the hearing world, but in fact to celebrate the beauty and the integrity of Sign, which is a visual language. And not just a visual language that's one-to-one. It's a richly spacial language that includes your field of vision out from the body itself.

So deaf education and the designing around deafness has been with us for a long time. And if you go to the archives at Gallaudet you'll see, for example, a somatic doorbell. It used to be in old buildings. They would have a doorbell, so you'd pull a chain from the outside, and a weight would drop. And the vibration that you would feel from that, if you were somebody on the inside, would alert you that there's somebody at the door. And these days, that's translated into you don't knock on the door at somebody's office, you flip the lights on and off from outside, so the switches are all along the exterior. So yeah, it's a really interesting alternate sensory.

Shasta:

I'm just laughing because it's classic possession in a horror movie.

Sara:

You mean like, "Oh, my God, I hadn't thought of this thing?" Oh, oh, the-

Shasta:

The lights flashing on and off. But it makes so much sense.

Sara:

Yes, I forgot about that. Yes!

Shasta:

Such a small change, and such a simple thing. It makes so much sense. I love the ingenuity. It's technology, but it's just also logical.

Sara:

That's right. And doesn't take some kind of huge innovation... certainly not a technology protagonist swooping in. In the last decade or so, an architect named Hansel Bowman and a bunch of Gallaudet students and Gallaudet alums and other researchers decided to look around their campus and say, "What are all the ways that this visual language of Sign and communication can be codified and made into a set of principles that we could point to and say, 'That's what it means to be deaf in architectural terms?'"

They came up with a list of 100 design principles that are organized in five categories that they call deaf space. Architects often talk about a building as an envelope that wraps around you. So deaf space is an envelope around deaf ways of being. If you go there, you might think, "Oh, these glossy modern buildings with lots of light and so on, and open plans, and things." But you'd be missing some of the key choices.

For example, in the deaf space architecture that has arisen as a result of these principles, you'll find super long sight lines across rooms that have room dividers that are at half height rather than full walls that divide rooms. Why? Because you don't need to make a barrier for sound. You actually need to be able to communicate short-, medium-, and long-range distances, and walls are your enemy there. And similarly, there's a huge emphasis on natural light because you don't want to interrupt. If you're signing outdoors and you walk through into a building and it's suddenly dark, you have a big disruption in the manual communication of signs. Same with door width, so that people can look at one another.

Shasta:

That makes so much sense. A thing I've never had to think of before. I'm enjoying this so much.

Gus:

That's Shasta for, "My mind is blown right now."

Sara:

Yeah. Me, too. I can't even tell you. Now it's the situation, too, where I was doing interviews with students that day, and a lot of people who are hearing might not realize that deaf folks enjoy music, too, in that somatic way. So I was in the lobby of a building with those long sight lines and interviewing students. I had to hear an interpreter who was voicing to me, and the students were signing to her. And there was music playing at a café kiosk in that same lobby, really loudly, because what a beautiful pleasure, the thrum of that bass that gets you right here. And if you're a deaf person, that's how you're enjoying it. But I had to say, "Could we go outside to finish the interview," because I became disabled by that environment. I couldn't actually sense to hear.

And you realize that the dynamics just switch on a dime. It was all the difference, just those kinds of moves. There's a huge number of design details that I talk about in the Room chapter about deaf space. But the thing that's really amazing, too, is the signing Starbucks, which is in the neighborhood of Gallaudet. And it is nothing more, nothing less than a regular old Starbucks, with its completely homogenous architecture, but it is staffed entirely by deaf employees. And all they've done to make it possible for a hearing person like me to order coffee is to just make the tiniest, not even very high tech subtle changes where it's a wipe-away tablet. You write down your order and your name. Your name comes up on a monitor at the end. You do your card in that automated way that we do now.

But it's so interesting because folks there do not make an attempt to make apologetics for the fact that they're signing. They don't voice at all. They don't actually call on somebody to interpret. We have this goodwill exchange where the dynamics are just reversed and shifted. I am a voicing person who comes into that deaf space, provisionally, that's half filled with deaf people and half hearing folks, and I get my coffee and I go back to the public sphere. It was just astonishing, and it's also really ordinary. I mean, it just blows my mind.

Shasta:

The deaf space engineering, particularly, what I picture is it's building square holes for square pegs, so all of that mismatch evaporates.

Sara:

I think people may see that and go, "Well, are you asking for a bespoke universe for each person? How will we ever have the special square pegs for square holes?" And I don't think that that's actually the point. Just as you said, Gus, everyone of us is negotiating how I'm an individual and how I'm part of a group, how I'm going to bring my body to the world, when I'm going to ask the world to come a little more toward my body.

And I think what's interesting about deaf space is that those folks paid such close attention to what are people actually doing with their time, and planning on human inventiveness and human surprises. Just like in the engineering lab where people get in love with a technique or a material, architects also in the studio get an idea of a modernist, sculptural, grand vision, and they've paid rather less attention to what people doing in all these incredibly interesting navigational ways. When we look, especially at non-normativity, we see that in particular.

Gus:

I think you summed it up beautifully in the book. You said that to be a really great designer, you need not just a mechanical ability but a mechanical disposition. And you defined that as the ability to see what was necessary and then proceed to build it, switching directions as trial and error required. So that mechanical disposition is something that really, again, is resonant in so many things that you're talking about here.

Now, I know we're supposed to finish at 10am, but I don't want to because there's still so much we want to explore. So I'd like to ask permission from all of our viewers to run over by about 10 minutes. Please, if you do need to leave, that's totally fine. Shasta, you look like you had something that you wanted to ask Sara.

Shasta:

Oh, I was just going to join in. All my synapses are firing. I think everyone has had that experience of observing something, of using something, of receiving something expensive and well made that was just super disappointing. Again, that unifying of the disability experience, or that shared experience, so it's not a disability-specific experience at all. It's like somebody has made something with lots of time and energy and you're saying, "Well, it wasn't worth the money."

Sara:

That's right. And that, I think, plagues industrial design generally, but I think there's something extra when you get really warm-hearted engineers and designers. And I do think that they're warm-hearted. They're in that mode of thinking, "I'm going to do inclusion now, because I'm going to drop this goody in people's lives," not imagining that in fact there are some of the most creative people already doing it their lives. Liz Jackson calls that a disability dongle, where people go, "I'm making up a need, and I'm going to drop it into the world."

Shasta:

Well-meaning of course...

Sara:

Totally well-meaning. But if you don't see yourself as connected to the state of disability, then you can get into, I think, that sort of wrong-headed thinking. This is where even empathy gets a little misguided, where you're sort of taking on the shoes of somebody else. And I just want to go, "Really and truly, you are a body who has needs. If you just take that seriously, I'm really interested in that fact." And then take a look at folks at Gallaudet and go, "Look at the ways that having that sharp misfit has actually made them extra, extra inventive."

Shasta:

That tension of entitlement and exclusion is evident in the way that so much of our built world has been made by one quite specific group of people, which has been white men. The majority of tampons and period products and bras were all created by people who have, majoritively, none of those appendages that need taken care of.

Sara:

That's industrial design at large, right? So human-centered design, yes, but also not as a crank to turn, but just look everywhere, truly everywhere, meaning look at the occupational therapist, the special educators, the ordinary students at Gallaudet, Chris at the diaper changing table, folks at the dementia village in the Netherlands. I mean, look at all those places where the needful body is being adapted and remade in the deep, creative ways that we want in our world.

Gus:

The final chapter in your book deals with Time. There were at least five or six concepts in your book that made me look differently at the world. And this was definitely one of them, this idea that we live in industrial time, and that when we escape from industrial time, there's always that incredible feeling of liberation that so many of us get. It can be when we're sick, it can be when we're on holiday, it can be maybe when we are laid off. Sooner or later though, we're sucked back into industrial time. In your book you say that the experience of being a person with a disability or caring for a person with a disability or just being linked intimately with someone with a disability allows you to experience time in a different way, and that that, for you, it was a positive in your life. Can you talk a little bit about industrial time and your son and how that's changed the way you experience life.

Sara:

Absolutely. And I should say, without romanticizing it at all, that Graham, my son who's 14 who has Down syndrome, is negotiating his misfit world in his own ways. I say in the beginning of the book, and I try to revisit this idea, that disability has both closures in our experience, so there are things that shut down to us and become not available to us, and also has openings in our experience. I would say that in raising Graham, I actually do have a deep sense of urgency because of the way that he misfits. I am going to need to think about him for the long haul. I'm very aware of that. He is among the most vulnerable people alive, economically, but also just existentially, because he is radically gentle in a way that defies all mindful gentleness. The vulnerability of that is bracing and urgent.

Also, he is a deeply adaptive person in the world who is not actually wed to industrial time in the forms that he experiences it. He is not actually interested in how well he does in school compared to his peers. I think he is well aware that he is different from his peers in lots of ways. He doesn't actually see it as a source of self-worth. And to be his parent is to be somebody marveling at this dimensional human who has infinite gifts, who has relationships and influences other people and who has preferences and idiosyncrasies and a very quirky sense of humor and can be a total pain in the ass, just like all the rest of us. And he gets to be that, and that's the dignity of being conscious there, again, too. He has helped me to ask, again, "How can a person be? What is a person, unearned, no meritocratic worth and standing?"

So I talk about this in that chapter of the Clock because it's about time. Not about the literal clock, but about this economic clock. How fast should Graham proceed through a K to 12 education? What kind of speed would prove how high-functioning he is in the language of evaluation? I get to, through a lot of history and stuff about developmental disability, to this word retarded, which is a neutral term in its description. We talk about flame retardancy for example. But it's so telling to me that retarded has become a slur. It's become weaponized, a clock word. To be slow is to be unworthy. To be slow is to be defective. To be slow is to be undesirable.

And how telling; not about my kiddo, but about the dominant order of the world, that the repulsion about slowness signifies about human worth. So that's where the closure and the opening thing for me, has been this invitation as his mother. And yes, as you said, Gus, I have to think about this. I mean, the feminist scholars call this derivative dependence. I do have to think about Graham for the long haul, economically and otherwise. So we are deeply woven together. But so few people can imagine that that ecology actually has its own life-giving, incredible joy and wisdom.

Again, without romanticizing it at all, so few people can imagine that our life is quite ordinary and replete with wonder. So Graham's invitation to me, not just as his mother, but as a person, a productive economic unit, has been to say, "Well, where does my worth come from? Do I want to be measured like that? Might it be otherwise?"

Shasta:

I would say that most teenagers exist in a space where they have to be assumed of integral worth and completely divorced from time, also!

Sara:

Right. Considering all the work they're doing, you mean, just developmentally?

Shasta:

Yeah, yeah, yeah. They just exist and sleep and have to be given the benefit of the doubt.

Sara:

That's right, because they're lurking and growing and doing all these things. But here, and again, this is probably at a shrill level in the United States in a way that lots of other people would find bizarre, but there is, even in teenagerhood, this production of anxiety about achievement, about worth, where it's tied to that kind of performance.

Shasta:

Yeah, definitely. A lot of the effort I try to put into the conversations I have with students as a science communicator, and I'm glad that I have access to those groups of people, is highlighting any and all of my failures to highlight. You said that you had dropped out of your PhD program. And that for you at the time was probably distressing. But to me, in the pointy end of my PhD program, I'm like, "These people exist!" And you seem fine.

I think one of the exciting psychological senses that I'm taking away from this conversation is rebellion, that permission to actually say, "Is my able-bodied world, is our able-bodied world, actually good enough? How much more could we be donating? How much better-fitting? Do I want to sit on a chair that was made for 17 other iterations of human body size?"

Sara:

That's right. And again, in the reformist way, even if I'm sanguine about markets, do I want the logic of the market, its language, its heeling to competition, its pitting people against one another, its ideas of optimization and productivity, do I want that mapped onto every feature of my life? So even if you accept an industrial culture and a market economy as the state of things, let's say that you do, do you want that, again, to spread its tentacles over all your relationships so that they become transactions, over all your interior life and your sort of spiritual wellbeing, call it spiritual, call it mind, call it soul, call it whatever you want, psyche? Do you want that market logic subsuming everything about who you are?

Shasta:

Yeah, you were talking about the imaginary naysayer asking, "Do you want a special tailored universe for every single individual?" And yet every single individual already does have a specially tailored universe. We make them for ourselves, in our houses and our homes and the insides of our heads and the products we buy for ourselves.

Sara:

Yeah, and the way we move down the street, the knitting together of that habitable universe. This is a sensing organ. I just want the wonder there. You can ask for a quite radical overhaul of the world, or you can say, if you want to say, "I'm a realist. I live in an economic society." Well, fine. But must it be the totalizing explanation of how we're going to be together?

Gus:

Sara, your book is out. It's been out since May. If people would like to find out more about the book, if they'd like to read it, there's a link here. That'll take you to Sara's website. It'll tell you a bit more about her. And there are links there to the book. I have not enjoyed a non-fiction book as much as yours in quite a while. As I have said many times today, it really made me look at the world differently, and I'm still enjoying the shift in perspective.

Sara:

Thank you.

Gus:

I want to thank you for writing such an amazing book, and I want to thank you for writing a book that feels very close to what we believe in here at Future Crunch. This idea of flipping the narrative, of putting a lens on things that we've traditionally looked at as problems and saying, "There are so many solutions. Humans are incredible. We're ingenious. We're capable of so much more than we realize." I think ultimately, that's why I love your work. It's very positive, and it's been great to hang out with you for the last hour and 10 minutes. So thank you.

Sara:

Thank you, and thanks for running over. I really appreciate it.

Gus:

Shasta, any final worlds from you? And then Sara, we will give you the final word.

Shasta:

Yeah, like I was just hinting at, I spend a lot of my time attempting to unpick the assumptions that were programmed in. I really enjoy that, and there are some catalysts in my life that unpicked a few that got that ball rolling. So I already spend a lot of my time looking for assumptions and taking that opportunity to be ask, "Well, why? Does it have to be that way?" So I'm just energized about an entire new sphere and new tools of looking at the built world. Now I get to ask well, what are the assumptions here? Are they good enough? I'm excited about that. All of that.

Sara:

Well, let me just say that in the end of the book, I cite a philosopher named Maxine Greene, who talks a lot about how each of us, certainly on this call, lives our lives between our stuff and our artifacts. And she encourages people to talk about the things in their lives, the art, but we might also say the design or the engineering. She says when we do that, when we get together and we talk about the way things are and the stuff in our lives, we are doing what she calls social imagination, which is just thinking as if things could be otherwise. If we're just attending, if we're just attending to the stuff in our lives, the artifacts and the tools and the expressive works that we love, we're thinking of worlds as though they could be otherwise. And I hope that folks here will feel that invitation, despite 2020, perhaps because of 2020, that "otherwise" is our highest calling, to keep after that sense that things don't have to be as they are.

Gus:

Sara, this has been a wonderful conversation. Folks, please show your appreciation if you can in the chat box for Sara, and we will see you hopefully for the next Future Brunch. That's it. Thank you very much.

Sara:

Thank you.

Shasta:

Awesome.