THE COLLEGE HILL INDEPENDENT


The Girl with the Serpentine Arm

by Stephanie Hayes

Illustration by Maya Sorabjee

published October 3, 2014


Jo-Jo Cranfield stares boldly at the camera as a twelve-foot long albino python wraps itself around her prostrate, bikini-clad body. Her raised eyebrows and pursed red lips dare you to question the situation. A second snake—this one green—loops its body in tidy coils around her left forearm. Its skin, subtly speckled with red, matches Jo-Jo’s pillarbox red bob and scarlet fingernails. Its thin tail pierces the soft skin on the underside of her wrist and slides into her flesh—a surreal needle and thread, like something directly out of a David Cronenberg film.

The first snake is real. The second, and the forearm it’s draped around, are made of silicon. But the snake-adorned arm is not a movie prop—although filmic special effects did inspire its design—it’s a prosthesis. The 21-year-old Jo-Jo is a congenital amputee, born without a left forearm or elbow. Throughout her life, Jo-Jo has amassed a collection of plastic arms, each with immovable fingers and unconvincingly even coloring, each as functionless and fake-looking as the one before. All of her arms aimed at invisibility and, failing that, were consigned to a box beneath the stairs or reserved for particularly cruel Halloween pranks.

This new limb, designed and photographed by The Alternative Limb Project, is the first she’s elected to wear. This limb, for a change, refuses to be contained. Slithering up and down her arm, it proudly flaunts its artificiality.

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The London-based Alternative Limb Project is at the forefront of innovative prosthetic design, creating bold, bespoke limbs for amputees across the United Kingdom. The studio’s founder, Sophie de Oliveira Barata, studied special effects prosthetics for TV and film before spending eight years making realistic-looking limbs for a major prosthetics provider in the UK. Although she continues to craft realistic appendages from silicon and human hair, what sets her studio apart are her “alternative limbs.” These slot into two categories: “surreal limbs” which combine realism with dream-like elements—picture a henna tattoo arm whose pattern never fades, a shoulder erupting with bird feathers, bionic components set into skin—and “unreal limbs,” that barely resemble human limbs and instead emphasize graphics, unusual textures, or even pieces of technology—imagine a leather arm with all the gadgets of a pocket watch tucked inside the fingers, a Japanese vase come to life as a leg, or a child-sized leg, layered with drawers to store a young girl’s stickers, pens, and glitter.

One such “unreal limb” is the “stereo leg,” designed for model and performing artist Viktoria de Modesta. The leather-coated, below-knee limb is fitted with a set of speakers and adorned with crystals, carefully placed so as to mirror the musculature of a natural leg. The leg’s titanium pole is exposed and ornamented with even more bling. The toes sparkle, too. In photographs, Modesta wears the leg with a futuristic plastic dress, patent leather heels, and a voluminous up-do—no jewelery needed.

“The first time I wore a limb that was so obviously BIONIC, it gave me a total sense of uniqueness and feeling of mutant human in the best way possible,” writes Modesta, in a testament posted on The Alternative Limb Project’s website. “It was really fascinating watching people’s reactions...the ideas they might have of what an amputee might look like or act like is, in most cases, negative. So when they clock my appearance and see the leg, it’s very challenging for them.”

Bold limbs convert prosthetic limbs into an accessory, an ornament, an addition, a chance to distinguish oneself in a positive way. But they remain a rarity.

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“The priority for design for disability,” writes Graham Pullin, author of Design Meets Disability, “has traditionally been to enable, while attracting as little attention as possible.” With the notable exception of glasses, this priority holds true today. Hearing aids are molded from pink plastic to blend in with white skin, braille is placed beneath existing signs so as not to disrupt the visual flow of public spaces, and wheelchair design continues to privilege function over form, channeling the mountain bike aesthetic but remaining largely uninfluenced by the dynamic world of chair design.

When it comes to prosthetic limbs, the dominant thinking is that a new limb should be as close to the old or absent limb as possible. A prosthesis, so the attitude goes, should realistically mirror both the movement and appearance of a natural limb. It should be simultaneously functional and subtle. In other words, invisible.

In recent years, prosthetic limbs have advanced greatly in the direction of realism, with the development of bionic limbs and prosthetic skin. Yet, within the bounds of today’s technology, prosthetics can still only achieve one of the two necessary facets of realism at a time: they can either look realistic or move realistically, but never both. Prosthetic design is stuck in a tug-o-war between form and functionality where advances in either direction cause losses to the other. The result is an uncanny middle ground where limbs are not quite invisible but still trying to blend in.

Even the highest quality limbs face this dilemma. Sophie de Oliveira Barata’s realistic line of limbs are uncanny in their imitation, mirroring actual appendages down to the last freckle, wrinkle, and even faint half-moon on the surface of the fingernail. Looking at photographs on The Alternative Limb Project website where her silicon creations sit alongside the corresponding real limb of their wearer, the only visible difference between the two appendages is that the artificial hands, feet, and arms end abruptly in midair. Once in motion, however, this sense of realism dissolves, as her prosthetics have fixed wrists and immovable fingers and toes.

The same applies to bionic limbs. The DEKA arm system, affectionately dubbed “Luke” after the Star Wars protagonist, received approval from the US Food and Drug Administration in May of 2014 and is one of the most advanced bionic limbs currently available. Roughly the size and weight of a natural adult arm, this robotic system has sensors that detect electrical activity in the amputee’s chest or shoulder muscles and send signals to the arm, which responds by opening or closing the hand, or switching its grip. Using this arm, war veterans who participated in clinical trials were able to use a key, zip up a pair of pants, and pick up a credit card from a table. The arm lets users perform dexterous tasks with relative ease, but, as the nickname suggests, it looks like the appendage of a Storm Trooper.

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When it comes to assistive technologies, the desire for invisibility could mean a number of things: that the person doesn’t want assumptions being made about their abilities, that they don’t want disability to be the main topic of conversation, or that they just want privacy. Certainly, these are all explanations amputees gave me in interviews. Yet, whether we intend it or not, the things we wear project an image. And, just as bold specs suggest confidence, when prosthetics shoot for invisibility and fail, they are often seen as a sign of shyness or even shame in one’s body.

To borrow Pullin’s question: “If discretion were to be challenged as a priority, what would take its place?” A possible answer is found in the history of glasses. As the only assistive technology thus far to have made the transition from a medical necessity to a fashion accessory, spectacles are often held up as the exemplar of design for disability. As recently as the 1930s, Britain’s National Health Services classed spectacles as a “medical appliance” and their wearers as “patients.” It was dictated that “medical products should not be styled,” writes Pullin. Even advertisements from the 1950s were directed at the optician, rather than the wearer-to-be, and frequently referred to the “patient” rather than the discerning customer. As late as the 1960s and ‘70s, British schoolgirls were prescribed transparent pink plastic frames, ambitiously called “invisible frames.”

Today, glasses are available in a range of styles and colors, and frames are named after poets, performers, and famous fictional characters—see Warby Parker’s “Beckett,” “Crosby,” and “Huxley.” Glasses fads are rampant. The 1990s saw a revival of “Granny Glasses,” those half-sized specs worn by the likes John Lennon and The Byrds in the mid 1960s. Then, in the early 2000s, the Harry Potter craze sent opticians scuttling to the backs of their storerooms to retrieve anything vaguely round for adults and children alike.

Glasses design has even reached the point where functionality is, at times, entirely irrelevant. Austrian glasses design Robert La Roche once boasted that not all the frames in his brochures were available to buy—they merely served to enhance the brand’s New Wave-inspired mystique. His promotional photographs show glasses exploding or dissolving in milk, and, more recently, employ a photographic process from the 1850s to create dramatic high-contrast photos. In 2012, there was a brief fad in the National Basketball Association where dominant and fashion-forward players like LeBron James, Dwayne Wade, Dwight Howard, and Russell Westbrook wore lensless specs to post-game interviews. It was heralded as “geek chic” and it was “cool.”

Crucially, glasses do not owe their acceptability to their invisibility. The fact that glasses continue to exist and thrive alongside contact lenses, which offer the chance for complete invisibility, is testament to this. It was the move towards larger, more colorful frames and away from transparency that saw glasses become more acceptable. By allowing the wearer to “own” their impairment, bold frames are somehow less stigmatizing than the supposedly invisible pink frames pedalled by the NHS.

But our newfound appreciation of glasses is not entirely due to their visibility, either. Colored and highly-decorated frames remain a minority taste, and most glasses still sit somewhere in the middle-ground between “invisible” and bold. In much the same manner, bold prosthetics are unlikely to appeal to the majority of amputees, nor are they practical or affordable options for most.

When I describe Cranfield's snake-adorned arm to the Founder of the New England Amputee Association, Rose Bissonnette, she makes a noise of disgust. “I’ve spoken to many arm amputees and I promise you, they want to look as normal as possible. Leg amputees often have insignias on their sockets but so few of the arm amputees I’ve spoken to want this. They just want to be as functional as possible.”

Bold limbs often place limits on practicality and, as a result, become accessory or additional limbs. Both Cranfield and Modesta explain, in testaments on The Alternative Limb Project Website, that they reserve their limbs for special occasions. “It’s a special piece that needs to be exposed only in special circumstances to be fully appreciated, meaning on stage, on film, or as part of an art installation,” writes Modesta, of her stereo leg. When she’s not rocking the snake limb at a club, Cranfield opts for no prosthesis at all. Priscilla Sutton, founder of Spare Parts, an exhibition that hands artists old prosthetics to use as their canvasses, explained that she reserves her full-shaped, tattoo-look leg for going out to dinner, as the added weight of the full-shaped cover makes it too heavy and cumbersome for day-to-day use. Most often she sports a leg with an exposed pole and a socket decorated with a Japanese-inspired floral print.

Financially, a second, ornamental limb isn’t an option for most amputees. Most struggle to fund a single limb. Meanwhile, limbs by The Alternative Limb Project cost between $4,600 and $21,000, depending on the materials needed and the intricacy of the design, according to an article by CNN. According to a study by the Amputee Coalition of America, the average below-knee and below-elbow prostheses cost $5,000-$7,000 and $3,000-$10,000, respectively. Due to the addition of joints, above-elbow and above-knee prosthetics cost, on average, between $10,000 and $30,000. Some of the more advanced prostheses can cost as much as $100,000, such as the “C-leg,” an above-knee leg fitted with microprocessing technology that adjusts to changes in speed and incline and helps recreate a natural gait.

Due to the immense cost of prosthetic limbs, many patients rely on insurers to pay for their limbs, which, in the United States, is a convoluted web. Funding schemes vary by state and differ wildly between public and private insurers. “Two people could be insured by the same company and be missing the same limb but receive completely different amounts of funding,” said Bissonnette. It seems the only consistent factor is that each scheme will only pay for what is absolutely “medically necessary.”

This system means that bold, creative, or aesthetically-pleasing limbs remain firmly outside the scope of insurance funding. One journalist, writing for The Boston Globe, summed up this attitude perfectly: “When someone has lost a limb, Medicare and private insurers would prefer to buy the Kia, not the Tesla, an electric car that sells for $70,000 and up.”

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While The Alternative Limb Project offers an extravagant and trailblazing look at the ability of design to redefine disability, more accessible options need to be considered—ones that sit somewhere between the poles of invisibility and bling, the unaffordable and the unconvincingly basic.

The recently formed Canadian company The Alleles provides a smart solution. Their below-knee prosthetic covers come in a range of colors and patterns, and can be simply clipped on to the titanium pole. Lightweight and at around $400 per cover, they’re a practical and relatively affordable option that allows amputees to introduce more variety and style into their prosthetic wear. Photos on the company's website shows a model rocking a coral-colored limb with a flowing coral dress and pairing pink spotted tights with a pale pink prosthesis with cutouts that make it look like lace.

It may sound simple, but for Priscilla Sutton all it took was a few polkadots to change how people approached her disability. “Color just changed everything,” she said, of her first ornamented socket. “It changed parents’ reactions too. Before, parents would pull the kids aside and say ‘shhh, don’t say anything’ and ‘look away’ and this whole socially awkward taboo crap. But when I had my polkadot leg, parents would say ‘I like your leg’ and the kid might wave.” She explained one instance where a little girl approached her at a supermarket and stood there in awe, not quite able to articulate that her spotted dress matched Sutton’s socket. “It’s still treated differently,” she said, of her amputation, “but in an excited, interested way.”

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In a TED talk entitled “My 12 Pairs of Legs,” paralympian, actor, and activist, Aimee Mullins, describes a speech she delivered to a group of six to eight year-olds at a children’s museum. She made a deal with the parents to let the kids into the room on their own for a few minutes, so they wouldn’t be briefed or censored by the adults. The kids immediately descended on a table of Mullins’ legs, poking and prodding them, wiggling the toes, leaning all their weight on the sprinting blade to see how it held.

“Kids,” she said, “When I woke up this morning, I decided I wanted to be able to jump over a house—nothing big; two or three stories. If you could think of any animal, any superhero, any cartoon character, anything you can dream up right now, what kind of legs would you build me?”

“Kangaroo!” one kid screamed.

“No, it should be a frog!”

“The Incredibles!”

“Hey, uh,” piped up one eight-year old, “why wouldn’t you want to fly, too?”

Across my interviews and research, I encountered a clear theme: it was always children who made and inspired bolder limb choices. An eight-year-old’s drawing of her dream leg, layered with drawers for her stickers, encouraged de Oliveira Barata to start The Alternative Limb Project. A five-year old’s decision to get Dora The Explorer printed on her leg pushed Priscilla Sutton to choose a patterned leg instead of a plain one.

Perhaps children can be taken as an indicator of how future generations will approach prosthetics, when the stigma that all too often surrounds amputation has dissolved in the same way as it did for eye impairment. Maybe a snake-adorned arm was what we needed to get adults on the same page as kids. Perhaps we will begin to see prosthetics as a realm for enhancement and creativity, for moving beyond the bounds of the body. For anything but invisibility.

“And just like that,” Mullins explains, “I went from being a woman that these kids would have been trained to see as disabled, to somebody that had potential that their bodies didn’t even have yet.”