When the World Isn’t Designed for Our Bodies

A new book argues that disability is a social phenomenon, not a medical one.
Figures with prosthetic arms and legs a person with dwarfism in a wheelchair in an abstract urban setting.
Sara Hendren’s project has a kind of beauty that is neither separable from design nor fully accountable to it.Illustration by Simone Noronha

“What Can a Body Do? How We Meet the Built World,” a new book by the artist and design researcher Sara Hendren, opens with a challenge. A curator named Amanda has come to Hendren’s classroom at the Olin College of Engineering, where the author teaches courses on technology and disability. Amanda, who gives frequent presentations for historians and gallery-goers, wants a lectern. Hendren pauses to consider the proposition. Lecterns, she notes, play “a sturdy supporting role in so many formalized rituals . . . covered in wood veneer and all more or less alike,” so nondescript as to be invisible. But lecterns are also inscribed with expectations about who speaks and who doesn’t; they assume that the most important voices belong to people of literal “standing”—people who are more than five feet tall.

Amanda, who has dwarfism, falls outside of that “canopy of normalcy.” She therefore meets Hendren’s criteria for disability: a mismatch exists between her and her environment. Hendren’s students could devise a prosthetic solution for Amanda. They could use tools to augment her body, “curing” her height “deficit” with a pedestal or step stool; this approach relies on a medical model of disability that locates impairment (and the responsibility for overcoming it) solely in the individual. But Amanda didn’t ask for a step stool. She wanted to appear before audiences as she was; when she presented her work, she wanted the room to temporarily adapt to her. Amanda’s request—a lectern scaled to her dimensions—cast disability as a partially social phenomenon, a two-way street.

This re-envisioning is one goal of Hendren’s book. “Ability and disability may be in part about the physical state of the body,” Hendren writes, “but they are also produced by the relative flexibility or rigidity of the built world.” Think of kneeling buses that enable wheelchair users to commute, or the need for one-size-fits-all airline seats. If disability is a matter of not being able to, say, take the bus or board a plane, then it can result when society “operates rigidly, with a brittle and scripted sense of what a body does or does not do.”

What can a body do, then, but also: What can design do to empower the body? How can design help us reimagine what “doing” looks like, in a way that embraces difference rather than pathologizing it? Hendren explains that her book arose out of an understanding that “there is a brute-force and impoverished definition of disability at work in the world.” This definition owes, in part, to the rise of “normalcy” as a modern standard of measure. Before the nineteenth century, Hendren writes, quoting the scholar Lennard Davis, “the concept of the ‘ideal’ was the regnant paradigm in relation to all bodies”—compared to gods and angels, everyone fell short. It wasn’t until social scientists began to collect population data, in the eighteen-hundreds, that averages, means, and distributions—ways of thinking about human beings relative to one another—came into vogue, fed by a Darwinian fascination with what was common, and thus natural, and thus good.

But, as Hendren reports, the most recent World Health Organization estimate suggests that roughly a billion people—fifteen per cent of humans—live with disability. Disability is, itself, normal. Nor is it a fixed identity: as infants, we are all dependent, and many of us pass through phases of disability throughout our lives, after surgery or during sickness, or as we age. The word has a fluidity that is often denied. As Hendren writes, some philosophers even contend that “the human animal is co-extensive with its tools”; we see with the help of contact lenses, we correct our stride with orthopedic shoes. Our general reliance on technology doesn’t erase the particular challenges faced by the disabled, who deal with a larger gap between the self and the world than most, but it does crystallize how, for humans, states of dependence are the rule, not the exception.

These insights lead Hendren to a profound conclusion: that disability, the condition of “misfit,” is also a “collective,” which “arises in the form of shared bodily vulnerability.” By “shared,” Hendren means shared among everyone. It is a daring claim—that weakness, above all, is what defines and unites us. But the book does not see this as discouraging, really. Hendren, who intends the universality of dependence to inspire in readers a sense of common obligation, critiques the American cult of self-reliance, which equates need with failure and empathy with naïveté. As an inventor, her business is possibility, the brightened future, and she takes less interest in shame than in ingenuity. Given the reality of limits, how do we then transcend them?

As a text about good design, “What Can a Body Do” models its subject. It has well-made sentences and an elegant structure. (The book radiates out thematically, from “the limbs of the body . . . to furniture, to rooms and buildings, to the public realm of streets, and finally to the clock.”) But Hendren’s project also has a kind of deep beauty that is neither separable from design nor fully accountable to it. Some molecular-level harmony obtains when writing seems so committed to being both interesting and humane. Chapters splurge on context and thrum with anecdote, especially as Hendren, the mother of a child with Down syndrome, threads her own experience with disability into her reporting.

The book’s first section looks at prosthetic body parts. There is a high-tech bionic arm, a low-cost Jaipur Foot, and a series of humble zip ties. Americans’ thinking about physical disability has evolved, Hendren suggests. Up through the early nineteen-hundreds, the “handicapped” were seen largely as tragic. They’d made heroic sacrifices on the battlefield or were freaks of nature: their bodies were mistakes or glorious ruins. But the waves of wounded soldiers returning from the World Wars forced the country to reimagine physical disability. It was vital that veterans resume work and regain their economic power; it was vital, therefore, to conceive of these men as capable of near-total rehabilitation. Enter prostheses, and a host of new cultural narratives: feel-good tales in which the wonders of technology seemed to erase the horrors of combat.

In the unpicking of these fantasies, Hendren’s humanism shines. She writes that the new stories, while uplifting, emphasized machines, not people, clouding “the quietly extraordinary dynamism of a body in its immediate world.” We meet Chris, an engineer who, born without an arm, found the prostheses pressed upon him by doctors heavy and awkward—so he improvised. Now, when Chris changes his son’s diaper, a rope sling dangling from his shoulder suspends the baby’s legs; he puts on a glove by bracing its elastic wrist against the edge of a table. Hendren’s aim here isn’t to throw cold water on innovation; it’s to re-center the people, behind the tools, who must work with their surroundings, their adaptations at least as miraculous as the technology that helps them.

If we’re overly besotted with objects that promise assistance, maybe that’s because our default objects—the givens of the built world—can seem so incompatible with our needs. Look down. Your chair, Hendren declares, is murdering you. (The historian Galen Cranz has noted correlations between chair use and “back pain of all sorts, fatigue, varicose veins, stress, and problems with the diaphragm, circulation, digestion, and general body development.”) Yet long stretches of sitting are a societal norm. Why? Hendren invokes the chair’s historical function: in many cultures, including corporate culture, throne-like seats symbolize power and status. We may also be drawn to chairs’ animal charisma, to their torsos, bottoms, and four sturdy legs. Regardless, Hendren argues, we could be sitting so much more comfortably if furniture makers were to attend as closely to matters of substance and sustainability as they do to matters of style. Disability activists, of course, have been making such arguments for years. One corollary of universal design—the idea that my perfect chair equals your perfect chair—states that improvements undertaken with disabled bodies in mind are likely to benefit everyone. (The telephone, for instance, emerged out of Alexander Graham Bell’s work with deaf students.) Hendren gives universal design a hearing, but she would rather remain alert to difference. The book thus lingers over “diffuse design,” which thrives on grassroots connections. In the diffuse model, artists, guided by local desires, make bespoke modifications to a received archetype.

The following chapter, on rooms, delves deeper into this notion. Hendren visits Gallaudet University, a bastion for deaf education. She encounters innovations geared toward deaf flourishing: ramps are preferred to stairs, so that students can walk and talk without looking down frequently; windows let in natural light and provide a link to the outdoors; seating configurations are tiered or feature multiple sightlines; and wood helpfully conducts vibrations. Gallaudet’s architecture incarnates a philosophy. It attunes itself to how specific bodies interact in space, because communication for the hearing-impaired is richer in gesture, more three-dimensional and kinesthetic, than communication for the hearing. Here, as elsewhere, Hendren tacks gracefully between the concrete and the theoretical. At one point, she explores the history of the “Rolling Quads,” a group of paraplegic students who moved into their own dormitory at the University of California, Berkeley, in the late nineteen-sixties. The story is absorbing in its own right; and in Hendren’s hands, it becomes a parable, illustrating the difference between “self-sufficiency,” the ability to navigate life unassisted, and “self-determination,” the ability to navigate life with dignity and agency.

Agency, both individual and civic, is a central motif for Hendren. The word carries a charge; it captures something that is at once valuable and ungovernable. Reading “What Can a Body Do,” one starts to think that design exists in part to safeguard, against the tyranny of convenience or efficiency, the agency that is every person’s right. But agency, when repressed, can also overflow design, or drive it forward. In a chapter on city planning, Hendren distinguishes between official routes and “desire lines,” which are informal paths worn by wayward feet. These tracks, shimmering with “casual disobedience,” lead Hendren to other instances in which people’s intuitions fall out of step with the built world. “Streets,” Hendren notes, “have long been designed for working men with physically strong bodies and no meaningful caretaking responsibilities.” The government didn’t mandate curb cuts on every corner until 1990, when the Americans with Disabilities Act passed. Just as lectern design expresses a theory about who deserves to speak, city design expresses a political theory, about who deserves access to public life. It is when “sidewalks and streets are built for some bodies and not for others” Hendren writes, that “thick injustice”—a kind of dense, monolithic inequity, which seems to exist everywhere and nowhere—sets in.

How “thick” is the injustice that now surrounds us? The book’s last, devastating chapter argues that our most closely packed biases have less to do with space, finally, than with time. If contemporary society diminishes the disabled, Hendren claims, it is because we have appointed the clock the highest judge of our moral and economic value. Modernity severs time from the body; we often eat or sleep when it is “time” to do so, not when we desire food or rest, and everywhere market priorities run rampant over physical needs. Industrial time, as the historian Lewis Mumford suggested, in 1934, is meant to synchronize our actions. But disability desynchronizes us. It extracts a fifty-year-old from middle age and deposits her in the body of an eighty-year-old. It gives a teen-ager the mind of a child. The world, Hendren writes, needs a “countervailing understanding of personhood and contribution and community,” one that lives “outside the logic of the market and its insistent clock.” Hendren’s book asks us to reimagine cognitive, physical, and emotional development as a dance, not a race. She pleads for “a future with slowness in it.”

This is, all in all, a strange text to read under the current circumstances—a “misfit,” maybe, or a changeling from an alternate timeline. Every sentence Hendren writes serves and strengthens a nexus of uncontroversial values: self-determination, creativity, care. Why aren’t people like her in charge? One should be grateful, I suppose: if a global pandemic affords us an opportunity to restructure rooms and buildings and streets, to rethink time, then Hendren is a valuable voice to consult, a person who’s earned her “standing.” But also: doing as the book asks is hard. Once you embrace a definition of disability that makes its existence a partial indictment of the social environment, then the word is not easily uncoupled from shame. Indeed, as Hendren writes, disability “reveals just how unfinished the world really is.” Her gift, perhaps, is to see that as an invitation.