PHILADELPHIA — Designs for Different Futures, organized by the Philadelphia Museum of Art, the Art Institute of Chicago, and the Walker Art Center, and currently on exhibit at the Philadelphia Museum of Art, disappointingly offers more favoring of today’s ableism in disabled people’s futures. Included are two works, suitx’s PhoeniX Exoskeleton and FFORA’s Essential Suite for Wheelchairs, that, although designed for wheelchair users, undermine wheelchair use through their design and curatorial display.
One of the first designs you encounter when rolling into the gallery is suitx’s PhoeniX Exoskeleton. Designed by Homayoon Kazerooni, the PhoeniX is a robotic system consisting of modular leg braces with computerized motors at the hips, powered by a battery worn over the user’s shoulders like a backpack. The museum placard presents it as a mobility device to “help patients,” or disabled people with paralysis of the lower limbs as a result of spinal cord injury, “walk independently.”
Few disabled people meet the criteria to use exoskeletons such as the PhoeniX. They are very expensive (the PhoeniX would be the cheapest medical exoskeleton on the market at $40,000), rarely covered by insurance, and offer few proven health effects that can’t be achieved with cheaper and easier means such as standing frames or exercise (though often health insurance won’t cover these either). The biggest benefit seems to be that they take people out of their much-maligned wheelchairs (which insurance also often doesn’t cover; are you sensing a pattern?).
As depicted in promotional materials and the exhibition catalogue, the PhoeniX is worn by user Steven Sanchez. Sanchez is shown looking up and off to the side, his body poised as if he is about to begin walking toward the well-lit future, and away from the darkened past. His arms are draped on the forearm crutches that aid with the stability and weight-shifting necessary to ambulate with the device, while also housing its user interface.
The image of Sanchez is used on a merchandise poster, but cropped so he is reduced to a headless, faceless body. In the gallery, the PhoeniX is displayed statically, without its seemingly vital components: the forearm crutches, as well as Sanchez or any user.
Presented this way, the exoskeleton erases the disabled body. It perhaps also seems more technologically advanced and less like the long leg braces and crutches people have used since the 1950s. When viewed in motion, Sanchez moves slowly, haltingly, relying on his arms to propel his body forward. Which, let me be clear, is not a bad thing. Exoskeleton use could potentially advance efforts to de-stigmatize, or at least neutralize, the “abnormal” gaits of disabled people.
The exoskeleton industry is a multi-billion-dollar market expected to continue growing. While most people are exposed to exoskeleton technology in the form of medical devices, much of the growth is in industrial and military applications. Indeed, suitx also makes industrial exoskeletons, and the placard tells us that the PhoeniX is “funded in part by income that Kazarooni’s lab earns producing other exoskeletons for the military market.”
How do the feel-good narratives of exoskeletons “letting” paralyzed people walk divert our attention from the more troubling aspects of this technology?
While the FDA regulates medical use of exoskeletons, there are no safety or regulatory standards when it comes to other applications. We simply do not know the long-term effects of exoskeleton use on the body. Several disturbing physiological effects have been reported during industrial use (i.e., manufacturing, production, and construction fields, as opposed to medical or military uses), including increased cardiovascular efforts and discomfort and strain on parts of the body not augmented by the exoskeleton.
The United States Armed Forces, one of the first developers of exoskeletons, continues to invest in the technology in order to improve the “lethality, maneuverability, mobility and survivability of the Army’s most valuable asset — the individual combatant.” Faced with dwindling recruitment numbers, the army seeks to extract even more from soldiers’ bodies, in order to “cover more ground with fewer forces”
In media coverage of medical exoskeletons, much is made of their ability to bring disabled users “eye-to-eye” with those around them. What’s never questioned are the ableist factors that make shortness or lowness such undesirable traits. Why is an upright or taller person who is sitting or leaning down to be closer to those below them less a sign of equality than the reverse? Why is being “eye-to-eye” such a desirable state to begin with?
As a wheelchair user, I work toward a different future in which our society has been deprogrammed from the cult of the stair and embraces the ramp as the default. In the meantime, assuming it would be free, I might consider technology that could help me climb stairs and thereby access affordable housing and public transportation, or evacuate a building in an emergency.
Unfortunately, Kazerooni doesn’t prioritize this. In a video interview with MedGate.com he states, “with our device, you can’t climb the stairs […] but it is light enough, and becomes inexpensive [enough] that it allows you to walk naturally at ground level, and that is the compromise […]” (emphasis mine).
In moving away from these assumptions — that short people need to be taller and upright, that locomotion and movement need to involve walking, and that walking needs to be smooth, fast, and even — perhaps inventors could design more useful technology for disabled people. (Or, better yet, why not just have more technology from disabled designers?)
Perhaps in order to present a balanced view of wheelchair life, next to the PhoeniX the curators included a piece by Lucy Jones and Joonas Kyostila for their company FFORA. “Essential Suite for Wheelchairs” consists of a cup holder attached to a wheelchair via an innovative system. This is certainly sleeker and more attractive than other cup holders designed for wheelchairs. But at $75, it’s expensive for people who have significantly lower incomes than non-disabled people and over double the rates of unemployment and poverty.
The cup holder is attached here to a white manual wheelchair with no backrest or seat cushion, the wheelchair reduced to a decorative prop or pedestal. As with the display of the PhoeniX, the result is that the work is made unusable for its intended user, the disabled person.
I imagine myself there, trying to balance on the uncomfortable, hard surface. My body, sitting lower in relation to the wheels without the height provided by a cushion, struggles to find stability without the benefit of a backrest. I imagine trying to push on the handrims and propel us forward toward a different future, but instead remaining here, just hoping we don’t fall backward.
Designs for Different Futures continues at the Philadelphia Museum of Art (2600 Benjamin Franklin Parkway, Philadelphia, Pennsylvania) through March 8.