'Wholeness comes in lots of packages.' So why do we design the world for the average body?
Photo by guernicamag.com
By Louise Kinross
What Can a Body Do? is a mind-shifting book by Sara Hendren that explores how design of the world around us advantages certain bodies and shuts others out.
“Ability and disability may be in part about the physical state of the body, but they are also produced by the relative flexibility or rigidity of the built world, its capacity to bend or adapt in a dance with bodies in a range of states and stages,” she writes.
Sara is an artist and design researcher at the Olin College of Engineering in Needham, Mass. She also has a son with Down syndrome. Her book introduces us to people with disabilities who are navigating a world that doesn't fit their needs and to ways we might considering making it anew—adapting tools, furniture, buildings, and even our concept of time. It all begins, she says, with a question: “How could it be otherwise?”
BLOOM: Why does the world need your book right now?
Sara Hendren: There are some longstanding ideas in the book that I would like more people to know about, and then some acute reasons in 2020 to be thinking about these topics.
The longstanding ideas are the wisdom and adaptation and urgent remaking of the world that disabled people have been doing for a long time. It's my observation that a lot of this rich history of disability rights and studies and scholarship sometimes is still hidden from view, unless people are interested in a deep 'researchy' way, or it arrives in their lives in a specific way.
But in fact, these topics offer this incredible wisdom about adaptation for everyone, and disability is one of those experiences that is so natural to the human condition. It comes through all of our lives. We start the world dependent on other people and often have lots of periods in life when we depend on others and when others depend on us. That needfulness is most widely addressed in the condition of disability.
The 2020 reason is that we're under a global pandemic and thinking about all the ways our bodies meet the world in very concrete daily choices: How much can we be out, with whom and how closely, and with what kind of gear? Will we wear face masks and shields? It's the rebuilding of stores and streets and schools to figure out how to take seriously that our own bodies depend on the health and wellbeing of other bodies.
BLOOM: You note in your book that the idea of a 'normal' body is relatively recent. Before the early 19th century, why were all bodies seen to be less than ideal?
Sara Hendren: This is my translating Lennard Davis and other disability scholars. A lot of times we forget that ideas that organize our lives also have a history—that ideas don’t arise from the ground, they are also human-made ideas. Prior to the 19th century, prior to social science and the science of statistics, all bodies were less than ideal because our bodies were not comparable to the bodies of the gods or the saints or other heroic figures that would have been in the mental universes of most people before the age of science and the Enlightenment.
It was really with the 19th century formation of social sciences, where mathematical calculations and measurement that people were using in natural sciences were now applied to human beings, that people were seen as groups, in aggregate, that could be quantified and measured and compared one to another.
Of course social sciences are really useful for understanding groups at large scale. But the idea of normalcy took on a comparative side-by-side analysis. Over the 19th century and into the 20th century, abetted by a misinterpretation of Charles Darwin for political reasons, the equation of socially scientific normalcy became not just a description of average, but an ideal to be aspired to. That's how you got the ugliest forms of eugenics in the early 20th century.
The idea was that you could perfect a society by encouraging the most normal of its citizens to procreate and thrive. We may now look back and say we’re no longer eugenicists in our organizing of one another, and yet we have normalcy and the idea of 'lives worth living,' and measurable grading of humans as 'high functioning' and 'low functioning,' and by percentiles and in milestones. Those are still the long shadow of the way we measure each other. Whether we intended to or not, it has a way of mapping human worth onto the bodies of some people and not so much on others.
Disability as an idea is deeply tied up with that history of normalcy and the way we all talk about one another. If you arrive in the pediatrician's office with any child, that child is conscripted into a whole series of measurements and graduations of where they fall relative to peers. I'm not saying that's not useful. But for every person occupying a body and thinking about those they love, we need to ask where are those statistics useful, and where do we want to turn our attention to the human being right in front of us, and the specificity of that?
Where is normalcy a useful tool and where is it pernicious?
BLOOM: You talk about how disability is a misfit between the built world and the person. You illustrate this with the art historian with dwarfism who came to your design students because she wanted a lectern that fit her size. Before they met her, they probably never realized that lecterns are built for people five feet and above. How can we make people understand that the way we design things advantages some and excludes others?
Sara Hendren: That's such a good question. A lot of people don't think about this stuff. In my field there’s a subset of design called critical design, or interrogative design, that asks questions. And I must say one of the reasons I wanted to open the book with the story of Amanda—we partnered in my lab to build her an object that does work, it's a very practical lectern at her scale that's portable and sturdy and lightweight—is because it will solve a problem, but it also asks a question. It’s not the kind of product that will arrive at the store, because it's not the kind of thing millions will use tomorrow. In that way, in Amanda’s lectern we were hoping to do that cultural work of art that helps you ask better questions, which is to say 'Who is the world designed for?'
I can't imagine a better lab practice that arrives with a question as the deliverable. I want people to keep thinking. I’m troubled, in a productive way, to think about who is the world designed for. Rather than making a tidy fix that hides the origins, I'm going to sit with that for a while and I'm going to look at the furniture of the world and the architecture of my street and I'm going to ask and wonder: 'Who is it built for?'
BLOOM: Anne Carlyle is a designer who did the interior design of a new hospital building we opened in 2006. We wanted it to be the anti-institution, so in addition to being fully accessible, we used the kind of materials you use in a home—wood, glass, ceramic tile, limestone—and we flooded it with natural light with floor to ceiling windows that look out to a ravine. Anne said building design conveys the value, or lack of value, of its inhabitants. It sends a clear message about who is valued and who isn't. After working in the new building, I could see how the beauty of the design conveyed a kind of respect for the people inside. It really did change how we—children and families and staff—feel in the building.
Sara Hendren: When you're in it, you feel differently. What you're getting at is that the materials of the built world have a language that they're coding. It's more than just being strong enough to hold up a body in a chair, or to build with enough drywall and rebar to house a room. The materials are also broadcasting what environmental psychologists call the action setting of what's happening.
When people go into a cafeteria vs. a cathedral they understand immediately lots of things based on the environmental cues of the material stuff around them. They can figure out how formal or casual it is, how loud or soft their voices should be. A lot is built into how echoey is the space or intimate? All of those things are environmental cues that tell us something not just about what we can do, but about how we should think about the people in that building.
A lot of hospitals are built in a clinical way to manage patients who are thought of primarily as patients. Now we're seeing revitalized attention to housing for aging. You want to think of people as three-dimensional. Yes they have some medical needs, but they're three-dimensional people. We see that being treated as a person and partnered with as a person makes a difference in their recovery.
Wood, glass, and natural light—those are connected to how we feel in our homes or in the park plazas of our lives. We want to be in those places. As your designer says, the language of the material tells us how to feel about one another and builds expectations about what can happen there. At your hospital, it's the deep inventiveness of what the kids are doing there, in adaptation, every day.
BLOOM: You introduce us to some people with amputations who find they can perform tasks better without a prosthetic arm using their own workarounds, but other people want them to wear the device, because it makes them look more normal. What does that say about what we value in our culture?
Sara Hendren: I tell the story of Chris in the limb chapter you’re talking about. He was born with one arm and over his childhood he had half a dozen arms built for him, with his family and the doctors gamely trying to get him to make use of them. But his body was so well adapted, and having been born that way, he knew no other way of being other than one-handed.
He was going to his high school prom and he thought I'm picking up a date, I'll be two-handed for this date, and he wore his arm. His date was like 'Why are you wearing that?' She knew him as one-handed. He took it off and said he never went back to wearing it.
BLOOM: There was a sense that some people wanted him to wear the prosthetic, even though it wasn't functional for him.
Sara Hendren: The sheer reach of instinctive normalcy is not just something we want for ourselves, but we’re getting messages about it from other people. It's not at the conscious level a lot of times. It's not like his parents were embarrassed about him, but they had lots of experts telling them what was best for their child, and that he needed it.
I wanted that story to feel like it would help the reader dawn a point of view, if and when her body changes, to ask what are the resources I could draw from, and how would I make a decision that’s wise for me? Rather than accepting one inherited wisdom about what a complete, normal body is.
I also write about Audre Lorde, who talks about surviving a mastectomy on one side, and going to the doctor's office post-operation. She wakens on the day to find that she has survived this procedure and she has optimism about her cancer. She finds herself in this asymmetrical situation in her body, with one breast. So she wears one earring to the doctor’s office. The nurse sees her and says 'You’re not wearing the prosthesis we gave you' and Lorde says 'Well, yeah, I’m happy without it. I’m good as I am.”
The nurse says 'It's bad morale for the office if you don't wear it' and Lorde understood this immediately: My body is never just the thing I have autonomy over. It's getting strong messages from others about what’s normal.
I always go back to that passage, because this was in the 1980s, way before the kind of beautiful photo campaigns we see now of women proudly showing their scars. It was in a time when there was an expectation of conformity.
The question is not 'Do I have to be like Lorde to be correct?' The reader could make any number of choices. The point is that you do have choices. Wholeness comes in lots of packages, and lots of shapes.
When our kids are born, or acquire their diagnoses, folks want to be helpful, and they send over these inspiration and overcomer stories. The story of the Paralympian who says 'I'm not defined by my disability.' There's the survivor-resilience story. I understand the impulse, but as a parent of a kid with Down syndrome, I also understand this wish to join a community of disabled people who have all kinds of stories, and to also let disability be ordinary, just because it's human.
A lot of times parents get conscripted into one or another narrative that you and your child have to live into, because they’re the stories that make other people feel better. While these narratives may be useful to each of us in certain moments of our lives, we also want the deep radical embrace of what is, which is to be ordinary and to be part of the human race.
BLOOM: You write about how our culture is repulsed by the idea of dependence, that it's seen as a foreign part of life.
Sara Hendren: It's what feminist philosophers call the autonomy myth—the idea a lot of us tell ourselves, in our little brains, that the things we’re proud to offer the world are the ones that we do on our own, that we do by ourselves.
A lot of people would prefer to be on the giving end vs. the receiving end of helping, because giving is the powerful position. It's harder for people to accept being on the receiving end of assistance.
Since we know our lives are bookended by needfulness—personal and political needfulness—we need a social structure that makes room for dependence. We have to think about the very material care that young children require, the minute-to-minute care. What does that mean for people who have jobs, for the way the city invests in park structures and health care? That needfulness is a universal part of life. It's at the beginning of life and also, normatively, at the end of life. And also at times in between. It’s really difficult for people to cede that position of being on the giving end, because that’s how we reassure ourselves that we matter and our lives have efficacy.
The stories in my book about people who have incorporated being on the receiving end of help reflect an utterly dignified life that's worth living.
A lot of people can't imagine depending on that help because it means such an inversion of what they count on now, in their normative body, as crucial to survival. But survival and flourishing looks like lots of different things, and disabled people understand this the best. They are the resident experts. If we know that dependence comes for every life, we should be asking disabled people about their experiences first.
BLOOM: When your son was born with Down syndrome, you were faced in a personal way with what you call misfit states. But instead of trying to make Graham better fit the world, you began to question why we don’t make the world more flexible. Can you speak to that?
Sara Hendren: My son is 14 now and we are actively negotiating this stuff all the time. I want parents to hear that it's not an easy either/or situation. To orient your readers, Rosemarie Garland-Thomson is the one with the idea of misfitting. It sounds self-evident: a square peg in a round hole that changes everything. The misfit runs both ways. It doesn't mean that the peg now has to have the responsibility of meeting the round hole. The hole doesn't fit the peg. Given we know the history of normalcy, what's the next right question? Is my job actually to help this square peg to form as much as possible to a round hole? A lot of parents would say 'I'm a realist and that’s what my child wants—end of story. It's a one way transaction of normalizing.'
Each set of parents is making a year by year and month by month calculation with these things. How much do I work with my child on these things that I think will smooth his path in the way the world is now? My book is full of people who say the way the world is now is insufficient. I would encourage parents to be alert to the fact that we're part of a bigger story, in the way disability and design have reshaped the built world.
I tell a story in the street chapter about a village for dementia in a Dutch town where a nursing home changed its architecture to be like a common street, with mixed zoning of businesses, and a gym and a restaurant and a hair salon. When I visited I'm thinking my goodness there are people here who said the status quo of nursing case is not adequate, it's not up to the task, it's not desirable, it's not nurturing. These folks were willing to poke at the status quo.
My son is going to high school and he's been talking a lot about cooking and restaurant work. Now my wheels are turning. What restaurants and retail stores make room for folks with developmental disabilities? What are the structures that could bend a little toward him, just as he will do that normalizing work. It runs both ways.
We do our best work, as parents and professionals, to see that multi-way back and forth. The dynamism of asking. Yes, people can come to the world when it's appropriate, but also asking the world to shift and bend.
There are so many examples of this—in people's living rooms and at the scale of cities with curb cuts. People thought it was impossible to do curb cuts and unrealistic, and yet here we are, the world has been reshaped. I hang on to these examples as beacons in my imagination. I don’t know day in and day out what the right question is, but I take strong cues from my son and I look closely at history. It's at least a two-way interaction.
BLOOM: I love your final chapter called Clock. It looks at how we determine human value based on the speed someone carries out tasks—whether it’s developmental milestones for kids or productivity at work. You suggest we can step outside that with something called crip time. Can you explain?
Sara Hendren: That chapter opens with a scene in Singapore city where they've implemented design for slowness. This is something people tend not to know about. If you're a senior citizen or someone with a disability, you can get your Metro card outfitted with a micro chip that will talk to the call box for the pedestrian signal at a street corner. If you hover your card over the box, it will expand the number of seconds you have to cross that street. So people who are slower get 12 to 13 seconds extra time. This is genius urban planning.
If you were to expand the time on all of the crosswalk signals, you would slow traffic. If you expand the time frame just for people who need it, it's an elegant way to make room for slowness.
What is design for slowness? That is the nature of the misfit that my son, who has a developmental disability, has. It's a non-normative time frame for moving through the world in every sense. In an academic and physical and developmental sense, he’s on a different timetable and it doesn’t conform to normative college and work structures.
Once you have a child like mine, whose sensory makeup and neurocognitive capacity is so at odds with that trajectory, you ask questions about the history of clocks. How did we get this K-to-12, through college, 40-hour work week? How did we get that relationship to time?
The clock we live on is the industrial one. It's the economic work clock.
All of those organizations of high-stakes testing and ranking and sorting, so you get to X college and not Y college, or this grad school or that one, or this starting salary or that one, are about how speedily and efficiently the person is getting the work done that we have decided to value.
There's so much promise in childhood and all of the structures for inclusion, but very little imagination about how to flourish outside of careerism and professionalism for our kids in adulthood. My son is fundamentally at odds with the kind of work and human value that's exacted with the clock.
That’s the foundational question all of us have to grapple with. It's industrial time—life by the clock down to daylight savings time and the idea of Greenwich meantime. To make sure industry is performed and performs in a way we expect. But is that the only clock? Is that the only relationship to time we want measuring us and making us obedient?
It helped me to break a little free with the assistance of 'crip time.'
Disabled scholars and activists talk about how in disability culture, people joke about being on crip time. That could mean I have a friend who has to take a two-hour bus because she has brittle-bone disease and can't take the subway. Or 'I’m on crip time because of the time it takes to get in and out of a public bathroom.' Crip time has a bigger, critical bite: 'I live in body that is at odds with industrial time, and as a disabled person I'm here to say I'm refusing that measure of my human value. I'm going to locate it somewhere else.'
As Graham’s mother, I’m thinking a lot about where am I unconsciously obeying the industrial clock, and where am I making a choice about crip time.
BLOOM: You write about how the labels of high-functioning and low-functioning are really about speed. About how quickly children acquire skills. When I think about that concept, it's so base.
Sara Hendren: You realize how language gets so naturalized that you don't take a close look at it again. Most of all, working in design teaches you the powers of attention. It cultivates your attention for what's commonplace and taken for granted and why.
My son has always been talked about as relatively high- or low-functioning in X or Y domain. What is high or low really about? People talk about it in terms of space—of up and down. It became clear to me that it was this clock thing: How fast or slow he was. This also exists on the opposite end of the spectrum, with kids we talk about as being gifted and advanced. We describe how speedily through time students do this accelerated curriculum that's for kids ahead of the curve. How we don't want them to be held back by kids who are slower.
Of course, 'retarded' is a neutral, descriptive term of slowness. It's become an insult because of our repulsion toward slowness. There's nothing wrong about being slow. It's not morally bad! And yet retarded became a slur because we were using slowness as a weapon.
You may want to check out the Abler blog that Sara Hendren wrote between 2009 and 2015 on prosthetics, critical design, assistive technology, and disability. The photo below is of dancer Alice Sheppard, who accompanied Sara to an exhibition in Seoul that included a dancing ramp designed by Sara. Alice is with Kinetic Light.
