Future Tense

The Truest Cyborg I Know

A high-tech home built specifically for people living with ALS offers a new way to conceive of independence.

A repeating image of the cover of Sara Hendren's book What Can a Body Do? How We Meet the Built World
Photo illustration by Slate. Photos by Amazon.

Adapted from What Can a Body Do? How We Meet the Built World by Sara Hendren published on August 18, 2020 by Riverhead, an imprint of Penguin Publishing Group, a division of Penguin Random House LLC. Copyright © 2020 Sara Hendren.

For the last couple of years, I’ve been visiting Steve Saling in Chelsea, Massachusetts, where he lives in a residence he designed for himself and a couple dozen other people, a mix of stunning “smart home” technology and human care that he created to arrive in time for his body’s big changes. Steve got a diagnosis of amyotrophic lateral sclerosis (ALS) in his late 30s. He’s 51 now. More than a dozen years into his condition, he has said repeatedly that his life is worth living—and that technology, in the absence of medicine, is “the cure.” Maybe that sounds like one more instance of overhyped claims for Silicon Valley—I would have thought so upon first hearing—but, over time, I came to understand what he meant.

In the architecture of the life that Steve created, I saw a kind of “anticipatory design”—to repurpose a term of Buckminster Fuller’s. At Saling House, the residence that bears Steve’s name, there are impressive digital devices that act, in one sense, as treatment: a whole array of ingenious software and hardware made to maximize his independence even as his body gradually changes. The sheer novelty of the engineering is impressive. But more impressive by far are the ideas packed into all his designed gear and services for life with little mobility—ideas about help, about needfulness. About assistance itself in every life. On my afternoons with him, my perspective and my vocabulary about giving and receiving help changed. Steve taught me to think differently about the plain fact of human needfulness and its role in a desirable life.

Saling House is part of the Leonard Florence Center for Living. From its lobby, there’s a set of extra-large elevators, the kind a full-size motorized wheelchair can enter and exit, for taking visitors up to the residence floors. On the days Steve met me downstairs, he directed his wheelchair’s movements by the padded switches that extend from its headrest to frame his temples; he moved his head very slightly to the left or right to make the commands. These motions, along with some muscle movement in his face, are the only mobility he has now. Steve always greeted me with a combination of his subtle smile, his blinks and light nods, and his words—“It’s good to see you, Sara”—expressed in the voice of an automated text‐to‐speech device on his chair. He then summoned the elevator himself, taking us up to the third floor, where he lives in a series of rooms that look and feel like a home.

There’s a cheery yellow façade that frames the entrance at Saling House—an interior wall painted to look like the exterior of a suburban home, with real wood shutters around a “window” next to the entrance, a couple of potted plants, and a welcome sign that bears the house’s name. Two sets of oversize doors open to the interior, each pair sending one door swinging in and one swinging out for the widest possible berth. Steve and I crossed into a shared common area just inside the main entrance, where the furniture is like that of many living rooms in single-family homes. The chairs and furniture, the colors of the walls—all of these are choices that have been made to mimic the hues of nature: warm yellows and soft blues and greens. The decor, including a fireplace, framed artwork, and club chairs, follows the logic of what lots of people instinctively do when they furnish their own spaces: choosing lamps and furnishings whose simple curves mirror those of the body, the visual language that says Come and relax, not, as in most hospitals and clinics, Beware the machines. The space is so homelike that you might miss the extraordinary sophistication of the technology that’s everywhere.

Steve has the boyish affect of someone much younger and the chin‐length brown hair that he’s had all of his adult life. He has the expressive eyes of someone whose other facial muscles are now slowed almost to a stop; the eyes do much of the emotional work for him, and they’re good at it. Steve operated the elevator, opened all the doors for me, sent texts to other residents, and lowered and raised the blinds, all powered by wheelchair commands. All of the temperature controls, the music and media equipment, and much else at Saling House is controllable by software that’s available, to Steve and to the other residents, via screen interfaces. All the residents of Saling House have either ALS or multiple sclerosis and need adaptive equipment; most use wheelchairs. On each chair, there’s a tablet that functions as central command, manipulable by hands or soft‐ended sticks moved by their mouths, or, in Steve’s case, by the tiniest cursor you’ve likely ever seen. On Steve’s eyeglasses, rounded classic gold frames, the cursor sits right in the center at the bridge of his nose. It’s like a flat round stud earring, easy to miss. His head movements direct its connection to the tablet in front of him, and that’s how he drives all the infrastructure. It’s the master key to this residence made for bodies like his.

On our visits, Steve and I would settle into the living room, or at the long table where meals are shared, or in his suite, where his walls, painted in jewel tones, are covered with images of himself in years past, hiking and climbing, and in the present, doing adaptive scuba diving with a team around him for spotting and tech support. I would ask him questions, notebook in hand, about his daily life, about the history of Saling House as an architecture project, about his plans for the future. He would type the answers, using the cursor. On that tablet screen, imagine a floating vertical line of the alphabet rising from the bottom of the screen’s edge, repeating itself over and over as it travels up the monitor. It’s a river of letters, endlessly repeated, hovering and sliding in a liquid manner, like cells under a microscope. Steve’s cursor motion “catches” a desired letter as it floats up to the center, separating it from the fast‐moving line. A text prediction algorithm jumps in to guess the likely word he’s going for, making shortcuts and lacing together sentences based on common phrases and his history of communications. But to watch the whole thing is like a trippy crossword puzzle for the uninitiated; it’s taken a studied integration of body and machine for Steve to make it work.

At certain points in our back‐and‐forth, Steve would hit play and the computer‐automated voice both spoke and displayed the words to me on the reverse side of his monitor. And in the interim, business as usual would continue: A building maintenance worker interrupted us to check with Steve about a decision on the water heater; he blinked his assent and returned to typing, pausing to greet nurses or other residents when they passed. This is Steve’s daily life in his altered body, and he’s careful to assure the world that some things haven’t changed. There’s a button mounted on the back of his headrest that instructs strangers to speak to him as they would anyone else. In the center it reads ALS has stolen my body, not my mind. And framing the edges are the words I am living with ALS. It’s a fact and a declarative statement—not coping with, not managing, not even suffering from, but living with this condition and every new thing it brings.

Steve was a practicing landscape architect when he started experiencing some neuropathy and a loss of motor control that got him worried. After a series of doctor visits, he got an official diagnosis in late 2006. In the early days, while part of his attention was devoted to medical research and pharmacological claims for cures, he also set about doing the work he knew well—the work of design. He was able to mentally fast‐forward and consider the harder questions; he started planning a place where he could live when he could no longer stand, or speak, or eat unassisted. Steve took it upon himself to research and imagine the look and operations of a space that could anticipate his future body. If he would lose nearly all movement, he told himself, then he would look to design—his background and training—to make a desirable life possible. Steve partnered with Barry Berman, a leader in nursing home care. As part of the Green House Project, a network of clinicians and caregiving executives who are creating (or restoring) high‐quality environments and services for older adults, Berman understood immediately the importance of the idea. The two worked together to find the philanthropic funding, the architects, and the software engineers to bring Steve’s vision to life. Those years of planning were difficult; “smart” home appliances had yet to come to the mainstream market. But Saling House opened its doors in 2010; in 2016, a second residence followed.

It’s not just the software that’s remarkable. The architectural choices are ingenious, too. The kitchen is open‐style, with the stovetop and surfaces at wheelchair height, with a big island attached, as in a home environment, but with careful accessible choices like stovetop knobs mounted on the side of the cooktop, rather than on the surface. There are two large dining tables nearby, one just a couple of inches higher than the other to accommodate different styles of wheelchairs. And just off the living room, connected by a screen door, is a patio and garden area, a small open‐air oasis up on this third floor of the building. The design features of this landscape may be the most ingenious of all: where the patio ends, there’s a patch of green lawn, bordered by flowering plants, but the lawn isn’t just grass. It’s paved underneath with an invisible bed of recycled plastic, making it strong enough to hold up under the grippy traction of motorized chair tires without getting stuck or tearing it to shreds. It’s fitting that Steve thought of this detail, as a landscape architect. Even the sod has been considered with wheelchair use in mind.

Many people with advanced ALS live their lives in chambers that are the anonymous and clinical habitation of hospital rooms: antiseptic, devoid of any homelike atmosphere, organized solely around medical management. Steve didn’t want that future, but a dozen years prior to our meeting, no alternative existed. He pursued a prototype that would make for a desirable life in his changing body, and this is what I spent time with him trying to understand. If you got a diagnosis for which there’s no cure, and you knew it would take all of your motor control but not your mind, or your ambitions, or your interests—how would you design for a new body, an evolving new life that you never expected, a life that’s still to come, out in front of you? Where would design be useful, when no cure is available? How would you want to wake up every day? Steve is integrated with his machines in an elegant way, if people can see it as such, and to watch him in action is to marvel at the environment that he’s constructed for himself: a livable residence, animated by machines. “Until medicine proves otherwise, technology is the answer,” he’s said repeatedly in interviews. It’s a slogan for the whole house, hung on a handmade sign near the front door. Call it anticipatory design, yes, and also a means of independence.

But to marvel at the technology alone would be to miss the mixed ecology of care that comes from human assistance, too—and from the radical acceptance of a life with assistance and dependence in it that carries lessons for us all. Steve and his housemates must make relationships with daily caregivers and must also decide to opt in or opt out of two kinds of machines that make their dependence more pronounced and consequential: Once he could no longer chew and swallow, Steve opted into using a feeding tube that gives him the nutrients he needs without the act of eating. And eventually, he will have to decide whether to use a ventilator to outsource the act of breathing. Some residents choose to depend on these machines, and some don’t. These decisions strain the edges of even the most expansive ideas of “independence.” Perhaps that’s why ALS in a meaningful life is so underimagined: Most conversations about the condition center on the means of a compassionate death, the ethics of assisted suicide, the autonomy of choices for the end. Those are important debates, too, but Steve taught me to see the life available in ALS. I learned to see these technological choices for Steve as variations on independence, evidence of creative, adaptive self‐determination. But I saw in him, too, that dependence—needfulness—is also the state of the human.

“It is a fact that humans all have a period of extended dependency at the beginning of life and during recurrent periods, such as when they are injured or ill or too frail to fend for themselves,” writes philosopher Eva Feder Kittay. “Some prefer to speak of interdependence,” she continues, but “we cannot acknowledge our interdependency without first recognizing our dependency. … [I]n some ways we are simply dependent and unable to respond to the other’s needs…it is part of our species typicality to be vulnerable to disability, to have periods of dependency, and to be responsible to care for dependent individuals.”

And indeed, anyone who has thought much about aging, for example, is sooner or later forced to grapple with the question of independent living, including questions about residential design.
As we age, and if we have choices, will we want a house in a familiar community or a more fully serviced retirement center? A set of steps outside as a trade‐off for having a dwelling all on one floor, or an apartment building with an elevator? A room in a house of your own, perhaps with a dog for security, or a shared home with family that trades privacy for peace of mind? In many cultures of the world, of course, aging parents live in the homes of their children in accordance with tradition; to live separately would be unthinkable. In more transient societies, where people move for jobs or related economic reasons, the aging of a parent or grandparent has a ripple effect on the rest of the family. Regardless of the specific physical circumstances, the explicit or implicit debate among families confronting aging is so often about what can be done independently, by which many nondisabled people mean by themselves. Whether to stay in or leave their own homes, above all, but also smaller but weighty decisions, such as whether to travel alone or accompanied, whether or not to drive, in the daytime or evening—these choices carry big emotional weight, because acting “by ourselves” often stands for a set of assumptions about competence, functionality, and self‐worth. It’s the way most design for older adults—most people, period—gets framed: products and environments for independence as self‐sufficiency.

But Kittay insists on an acknowledgment of basic dependency as a fact of human life that can be just as richly imagined as independence. There are both closures and openings to this state of affairs:

When we recognize that dependency is an aspect of what it is to be the sorts of beings we are, [then] we, as a society, can begin to confront our fear and loathing of dependency and with it, of disability. When we acknowledge how dependence on another saves us from isolation and provides the connections to another that [make] life worthwhile, we can start the process of embracing needed dependencies.

Kittay is a scholar, but she’s not writing purely in the abstract; she is also the mother of an adult daughter, Sesha, who has complex cognitive and physical disabilities that will always require significant assistive care, so she has experienced these gifts firsthand:

I have received from my daughter Sesha a knowledge of, as [philosopher Alasdair] MacIntyre puts it, “the virtues of acknowledged dependency,” and of the extraordinary possibilities inherent in relationships of care toward one who reciprocates, but not in the same coin; one who cannot be independent, but makes a gift of her joy and her love.

Redefining independence, in the technologically mediated life of a man like Steve, helps nondisabled people to reconsider their own tacitly held ideas about asking for help. But redefined dependence—as an ordinary fact of our lives that might also, in part, be salutary? This is its own profound lesson. Dependence creates relationships of necessary care—care that may be undertaken by individuals, families, local communities and municipal organizations, churches and mosques and temples, states or nations, or all of those in some mix. Kittay has understood from her own experience of acute dependency that her daughter’s situation is distinctive, but it’s also, in the perspective of any human life span, utterly common. “People do not spring up from the soil like mushrooms,” Kittay writes. “People need to be cared for and nurtured throughout their lives by other people.” In her relationship with Sesha, Kittay describes a mutuality more mysterious than transactional. Reciprocity that is “not in the same coin” forms an attachment that might look, from outside, asymmetrical: one party giving and the other receiving. But dwelling together, offering and accepting forms of help, is never a mechanical, zero‐sum exchange.

Dependency and the care it requires may be the most distilled definition of disability and also the most universal. Some scholars, like Sharon Snyder, Brenda Jo Brueggemann, and Rosemarie Garland-Thomson, claim that disability may well be “the fundamental aspect of human embodiment.” The fundamental aspect? What a notion—that the universalizing experience of disability, states of dimensional dependence from our infancy through the end of life, might be the central fact of having a body, or rather being a body. It’s an idea that could alter one’s very sense of self, if we let it.

And yet, these scholars note, nondisabled people perpetually go to great intellectual and emotional lengths to distance their own bodies from the experience of disability in others: “The disabled body is imagined not as the universal consequence of living an embodied life, but rather as an alien condition.” Steve’s condition registers as deeply alien indeed to many people. There are philanthropic donors whose gifts, combined with Medicaid funding, make Saling House possible but who have never personally been on site to visit. They can’t bear to see the people living there—to be in a room where bodily need is so vividly apparent.

Steve, however—without any romanticism about it—is the truest cyborg, surely, I know. He is integrated, body‐to‐machine and back: the body plus its many tools and devices, with its independence, its interdependence, and its dependence all made plainly, unavoidably visible. Two things can be true of his experience at once, and Steve taught me both: that he and everyone else would immediately, resoundingly rejoice in a medical cure for ALS. And that a life worth living, a life with both independence and dependence meted out in its material and immaterial goods, might also be built.

The cover of Sara Hendren's book What Can a Body Do? How We Meet the Built World.
Riverhead

Future Tense is a partnership of Slate, New America, and Arizona State University that examines emerging technologies, public policy, and society.