The Body Eclectic originally ran in Razorcake #79 (April / May 2014). Here is a printable PDF and full text of the article.
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The Body Eclectic: Sara Hendren Rethinks Devices for the Disabled, And I Contemplate My Cyborg Boobs by Cheryl Klein
1. Peg-Legged Princess
I wanted to be handicapped when I was a kid.
Handicapped predated “disabled,” “differently-abled,” and “physically challenged,” but postdated “crippled.” When I wasn’t busy playing Olympic gymnast—i.e. someone extraordinarily able-bodied—I was pretending I couldn’t even walk. I turned a green fold-up stepstool into a wheelchair or swung around on the wooden crutches my dad made me for Christmas.
I can only hope to support my future children’s odd hobbies so non-judgmentally.
When my mom read Laura Ingalls Wilder’s Little House books to my sister and me, I didn’t want to be imaginative, rambunctious Laura, probably because I actually was like her. I wanted to be good, beautiful, blind Mary. I also loved a book called Mine for Keeps, about a girl with leg braces and a puppy, which I envied in that order. I taught myself the sign language alphabet from a book called Different and Alike. I ran my fingers over its page of Braille.
I’m not sure what the appeal of disability was, but I have some theories. My older cousin was deaf, and I was fascinated by the beige crescent moon that hovered above her better ear, its little tubes and custom proto ear bud. For me it was all about the accessories. I would have found dyslexia or kidney failure highly unglamorous because they were invisible.
I was just under three when my sister was born. Her legs were crooked from being crunched up in my mom’s uterus the wrong way. For a while she wore white casts on both legs to straighten them out. My mom worried that people would think she’d dropped her baby down the stairs or something, but I was deeply envious. Her doctor gave me my own arm cast for a while, my mom says, but I don’t remember this, and I certainly don’t remember anyone taking it off with a saw, the way I’d seen on TV.
My therapist is always telling me how scarred I am by my sister’s birth, which was nothing out of the ordinary by most measures, but must have hit me at a particular developmental moment and been handled by my parents in a particular way. Suddenly, I wasn’t the adorable baby anymore. Suddenly, I was praised only for my self-sufficiency, for being a “big girl.”
The temptation to retreat into a state of needy specialness—like my plaster-stockinged, adored baby sister—must have been high. If I could be an Olympic gymnast, awesome. I would be lean-muscled, spring-loaded, and powerful. But what if I couldn’t do it? As young as five or six, I felt the pressure of my own expectations and those I perceived from my parents and the world around me. If only I had some visible marker of life’s challenges—a hearing aid or a white cane or a wheelchair—people would understand I had a tough road. Then, when I proceeded to do “normal” things like cross the street or read a book, those small acts would be cast in an admirable, magical light. I would be a peg-legged princess.
2. The Cure for Hypochondria Is Cancer
As most people over thirty know, the romance of illness and disability wanes as your body reveals its limitations. By the time I was diagnosed with early(ish)-stage breast cancer at thirty-five, I’d survived a hernia and a miscarriage that had turned me into a PTSD-suffering hypochondriac. Every time my fingers tingled, I was sure it was multiple sclerosis. I thought the bumps on my spine were neck cancer. If I went twenty-four hours without shitting, I was certain I had some kind of malignant, fatal intestinal blockage. Gone were my childhood fantasies of disability-cool. As I saw it now, I only had two choices, which were not really choices: be a “big girl”-grownup in perfect health, or die a slow, painful death.
But as it turns out, cancer is a pretty good cure for hypochondria. It’s like falling off the cliff, hitting the ground, and discovering that you can walk on the bones you always feared breaking.
Arguably, I became the needy, special kid I always wanted to be: I was out-and-proud with my bald chemo head, and although I claimed it was absurd when strangers approached me and told me how brave I was (because how did they know? Where were they when I was sobbing so hard my sinuses swelled shut?), I also relished the attention. Days after my double mastectomy, I was taking three-mile walks. I kept working. I kept writing. I taught an online class on top of my regular job during my final rounds of chemo.
Even from the vantage point of five months, I can see how desperate I was to be a model patient, to be some sort of sexy wounded superhero, to prove myself indestructible even as I surrendered to the facts of my dependency—on doctors, medicine, family, and friends.
In her essay “All Technology is Assistive Technology,” artist and writer Sara Hendren says:
All people, over the course of their lives, traffic between times of relative independence and dependence. So the questions cultures ask, the technologies they invent, and how those technologies broadcast a message about their users—weakness and strength, agency and passivity—are important ones.
In other words, you might say I was at a disadvantage because I no longer had tits that could breastfeed an infant. If/when my partner and I adopt a baby, a bottle full of formula will be the boob equivalent of a wheelchair. But that bottle full of formula is also an assistive device for the baby, who does not have the ability to walk to the kitchen and make herself a taco. And taco-makin’ stoves are assistive devices because humans have to eat cooked food because we don’t have the big guts, like our simian ancestors, that would make us able to digest huge amounts of raw food.
In other words, my independence is a shattered myth. But so is yours.
3. “If You Can Acknowledge the Debates Within the Field, I’ll Actually Trust You More.”
Sometime during my treatment, I discovered Abler (ablersite.org), Sara Hendren’s blog about “art, adaptive technologies and prosthetics, the future of human bodies in the built environment, and related ideas.” It’s one part design blog, one part TED talk, and one part critical theory class—but with lots of pictures and stories about really cool things that are helping people live in their bodies in more interesting, useful ways.
The devices Hendren profiles range from the über-practical (a spoon that counterbalances a shaky hand) to the whimsically futuristic (a suit that allows its wearer to play the strings of a suspension bridge like a harp). What they have in common is outside-the-box thinking, in which our bodies are the box.
I was fortunate to have the opportunity to email interview Hendren about Abler:
Cheryl Klein: How did you first develop an interest in the intersection of art, design, disability, and science?
Sara Hendren: Abler came about in a really unformed and intuitive way at first; I wanted to find a way to document the ways that artists and designers—not just engineers and programmers—addressed challenges in the body in really interesting and unexpected ways. So I just started collecting work that circled very broadly around this idea of ability and disability as mediated through prosthetic devices. I was also starting to change my practice as an artist pretty significantly, but slowly, so I decided to make a website that would be outward-facing, pointing to the work of others, not just a documentation of my own work.
From there, over time, I developed a point of view about these devices and how tech gets made, talked about, promoted. So now I think of Abler as a kind of intervention into tech journalism—trying to bring some productive skepticism and uncertainty about whose bodies need “fixing” and what the material languages of design do for cultural understandings of ability and need. I’m happy to say that Abler just became its own channel over at Gizmodo (abler.gizmodo.com), one of the big tech websites that’s now expanding into design, architecture, and urbanism as well. I’m thrilled; it’s just the kind of growth and change I hoped for with Abler—that so-called “assistive technologies” would be seen right up alongside mainstream tech developments.
Klein: In your “Adaptation, Part I” post—sort of the backstory and mission statement of your blog—you talk about Western culture’s obsession with statistics, measuring ourselves against a “norm.” In the recent past, I fell down a rabbit hole of statistics, first as they pertained to fertility, then as they pertained to cancer survival after being diagnosed with early(ish)-stage breast cancer last year. And, not surprisingly, I discovered they’re only useful to a point. How did you come to an alternate, non-bell-curve-based view of the body and world? Was it ever an uphill battle? (Obviously I’m looking for tips here!)
Hendren: I get it, I really do. My own first experience of becoming a “citizen-patient” happened before I was ever really consciously thinking about disability; it was in my experience with pregnancy and childbearing, three times over. Once I started looking around at birth options, talking to doctors and midwives, really digging into the research and reading widely, I realized that there are plenty of medical practices around pregnancy and birthing that aren’t supported by science—they’re about liability and hospital protocols. That doesn’t mean they’re evil, but they’re not suited for individuals, only for groups in the most abstracted sense.
So I think in every case of abnormality—whether mere atypicality or a true diseased state—we have to look at what gets medicalized with an eye toward history, and to be prepared to ask a lot of questions of a lot of different kinds of experts. It’s exhausting, that work, but no one can do it for us. I’ve had to be reminded of this the hard way many times. Lately I’ve taken to saying to doctors: “Look, I understand what a double-blind study is; I know that there are differing opinions about [this or that treatment, or the question of whether to treat]. If you can acknowledge the debates in the field, I’ll actually trust you more than if you act as though your opinion is the only possible one.” This helps me get more nuanced conversations going with medical professionals.
I can’t overstate enough the importance of a long historical perspective in these matters. Historians of science and medicine can help us hold our “presentism” in check; that’s why it’s so important to understand the bell curve, for example, as a very culturally situated phenomenon, not some universal way of organizing people and populations.
4. Like a Cyborg
I’d been thinking about my boobs in an Abler-like context ever since getting them hacked off. Although I did mourn the opportunity to breastfeed, I did not mourn them aesthetically. My natural boobs had been DDs that were already succumbing a bit to gravity. My unspoken deal with them—not that the body is ever true to its word—was that I would appreciate them as long as they stayed healthy. When a tumor appeared on my mammogram, they were out of there. Spaghetti straps and halter tops and B-cups that enabled me to don secretary-chic blouses without looking frumpy were in.
Here’s how fake boobs are made, post-mastectomy (it’s a different process for starlets, because they have real breast tissue to work with): The reconstructive surgeon stretches the pectoral muscles and puts a small “tissue expander” implant underneath. It’s rock hard and crinkly at the edges, like having a crumpled up paper bag inside your body, but from the outside it looks pretty normal. There’s a little metal port, which he finds later with one of those stud-finder thingamabobs your dad used when hammering a nail into the wall. That tells him where to put the needle he’ll use to fill the deflated plastic bag with water, stretching the muscle until it’s flexible enough to hold whatever size boob you want. In a second, shorter surgery, he swaps out the place-holder implants for softer silicone ones.
It is as weird as it sounds.
I felt like a cyborg—which was kind of rad.
Like a lot of people, I’d always thought of plastic surgeons as the least noble of doctors, but that changed when I watched Dr. Max Lehfeldt—my nattily dressed plastic surgeon—sketch on my body with a purple Sharpie. I realized he was an artist who worked with the most difficult of materials—materials that needed good blood flow, materials that talked back.
Sometimes I think of myself as an amputee (though it’s not like I had to learn to walk again on my fake boobs, so I realize the comparison minimizes the experience of actual amputees); because my oncological surgeon had a “no nipple preservation” policy, and my plastic surgeon doesn’t like to rebuild them on patients who’ve received radiation (radiated skin is understandably finicky), I am still nipple-free. There is a part of me that is visibly Not As I Was Born.
Well, I guess I wasn’t born with boobs, but you know what I mean.
Now I’m wearing this internal prosthetic that is also a work of art. It’s the type of art that’s meant to look natural, but what if I decided to get really postmodern? What if my implants had goldfish swimming in them, like the heels of 1970s platform shoes? What if they could somehow hold my iPod or keep me cool on hot days?
In grad school, I took a class called Popular, Political and Postmodern Performance from a woman named Jennifer Miller, who’d worked as a bearded lady at Coney Island. The subject of Cirque du Soleil came up in class one day. She acknowledged the talent of Cirque performers, but confessed she missed the pared-down, visible apparatuses that are so much a part of circus imagery—the ladders and ropes and rigging.
When I think of Abler, I think of Jennifer Miller, and not just because she wore her beard off-duty, forcing those who met her to contemplate bodily norms. Abler suggests that if we make the rigging visible, the performance will be that much more spectacular.
5. Artists as Citizens
Klein: I love how you highlight ways that adaptive devices can be both visible and stylish—and as such, not sources of shame. There’s a stereotype of wheelchairs, hearing aids, etc. as being clunky and strictly utilitarian. On the flip-side, there’s a stereotype of art (fine art more than design, perhaps) as being frivolous—stuff to decorate rich people’s houses. Clearly a lot of artists and designers are defying this. How can we encourage more artists to do so, at both the academic and community levels?
Hendren: Yes, both the medicalization of assistive tech and the marginalization of artists are troublesome realities that I want to see change. So I’m for “better design” in the development of so-called “assistive” devices; it’s great to bring more design integrity to these objects, full stop. But I’m wanting artists and designers to do something more ambitious and more subtle at once: I want more “critical design” or “interrogative design” around prosthetics and these ideas of the medicalized and normal/abnormal body. So I want design that’s not necessarily about function. I also want the friction of questions, the opportunity for a designed artifact or system to hold up questions, indefinitely.
In general—outside of disability—I want to see artists and designers view their work as inquiry, and to wed their practices together with researchers in fields outside their own. Not as culture makers who merely react, respond, critique the “real work” of Big Science, Big Data, etc.—but as thinkers with a stake as citizens in these matters, and as people who are skilled at making expressive, collaborative, often publicly accessible work about science and tech right alongside those fields. More residencies and such that take place in institutions that aren’t normally open to artists.
Klein: I really appreciate the historical longview you mention, and I agree that it’s missing from a lot of tech journalism (the “breathless tech utopianism” you mention). Are there particular innovations you see in the past that resonate with Abler? You talk about glasses jumping the divide from medical device to fashion—are there other devices that you see having taken a similar, if maybe subtler, path?
Hendren: You’ll see hearing aids and canes and wheelchairs all getting new design attention, and there are customized limbs (for a steep price) via places like Bespoke Innovations and the Alternative Limb Project.
In the case of canes, for sure, you’d see some beautifully carved, ornate models prior to the twentieth century. After a long series of decades of looking pretty medical, we’re seeing that design attention return. So there are, yes, longer stories other than glasses. But glasses are so striking because they literally don’t share any medical associations with other kinds of assistive tech.
Klein: There are debates within disability communities about definitions of disability and what needs to be “fixed.” (Deaf people who see cochlear implants as a threat to a vibrant deaf culture, for example.) How does Abler enter into these discussions? Have you encountered any resistance or skepticism from the intended users of the devices you highlight?
Hendren: These are very important questions indeed, and I have long tried to highlight those undercurrents and tensions, because they’re discussions worth having in public. I try to highlight as much “interrogative design” as I do “functional prosthetics,” precisely to keep a productive uncertainty alive about who has “special needs” and what the devices would be to meet those needs. I also encourage designers to maintain a skeptical stance around their own assumptions about who might use which device for what end.
Klein: Who are your critical influences? You mention historian David Edgerton, and it seems like Donna Haraway’s “Cyborg Manifesto”—and her idea that we’re all a mix of real and imagined, biological and fabricated—is threaded throughout Abler.
Hendren: Yes, Haraway for sure—especially her refusal to be a kind of Luddite feminist, and instead to claim the critical political space that’s possible in embracing technology and the future—with critical wits intact. I love her idea that the cyborg should embrace its capacity to “transgress boundaries, make potent fusions, and suggest even dangerous possibilities”—that these explorations are, she said, “one part of needed political work.”
Klein: In your research, you encounter all kinds of new devices, prosthetics, etc. What pieces have resonated most strongly with you as a person and as an artist, just on a gut level?
Hendren: I frequently come back to Wendy Jacob’s squeeze chair project, one she did in collaboration with Temple Grandin. That was one of the first projects I saw in this vein of critical design around disability, and it made me realize what was possible. I also adore Lauren McCarthy’s work, especially her Conversacube, Michael Kontonpoulos’s various measures of discontent, Jennifer Crupi’s gestural jewelry, Noam Toran’s desire management and related devices/films, and so many more.
Klein: How has producing Abler affected your practice as an artist?
Hendren: Profoundly! I keep these projects like a set of imaginary friends, in every sense, as exemplars for my own work. Writing about them forces me to examine what their operative force is—why they work so well, or what questions they raise, and so on.
Klein: And now I’m about to get in my car and drive to work, which of course is an adaptive technology, because I don’t have the time or stamina to walk fifteen miles every day.
• “Introducing Abler” by Sara Hendren
• The Alternative Limb Project
• “A Cyborg Manifesto” by Donna Haraway
• Wendy Jacobs’ Squeeze Chair Project
• Lauren McCarthy’s Conversacube
• Michael Kontopolos
• Jennifer Crupi
Cheryl Klein is the author of a story collection, The Commuters (City Works Press), and a novel Lilac Mines (Manic D Press). Her stories and essays have appeared in Blunderbuss, MUTHA, The Normal School, Razorcake, and several anthologies. Her work has been honored by the MacDowell Colony and the Center for Cultural Innovation. She blogs about the intersection of art, life, and carbohydrates at breadandbread.blogspot.com.
Razorcake is a bi-monthly, Los Angeles-based fanzine that provides consistent coverage of do-it-yourself punk culture. We believe in positive, progressive, community-friendly DIY punk, and are the only bona fide 501(c)(3) non-profit music magazine in America. We do our part.
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