JOON KIMWheelchair rugby championship: photography helped researcher become closer to interviewees JOON KIM
Doctoral research that won the most recent Capes Dissertation Prize suggests that the idea of the cyborg, a human-machine hybrid capable of extending biological limits, has been appropriated by imagery associated with the technologies used to rehabilitate people with amputated limbs or victims of spinal cord injuries. The force of this imagery is such that, in the case of some Paralympic athletes, it even erases the stigma that often depreciates their social identity. Defended at the University of São Paulo (USP) School of Philosophy, Languages and Literature, and Human Sciences by Joon Ho Kim, under the supervision of Professor Sylvia Caiuby Novaes, the dissertation won the Capes Award in the Anthropology and Archaeology category. “I was surprised by the award because there are countless excellent studies in more traditional areas of anthropology, such as urban anthropology and especially indigenous ethnology,” says Joon Ho Kim.
The subject of the dissertation is related to that of his master’s thesis, defended in 2005. In the latter, Kim addressed the imagery of cybernetic technologies in cinematographic production during the last two decades, in films like Johnny Mnemonic (1995) and the Matrix trilogy (1999-2003), in which the characters connect to computer networks via plugs inserted into their heads, or in The Terminator films. “The cyborgs and cyberspace in the films are products of what we could call cyberculture, a positive cultural response creating a new order of reality when faced with unheard-of contexts, arising from the spread of cybernetic technologies and the popularization of scientific discourse that challenge the traditional categories applied when interpreting reality,” he says. Cyberculture is derived from concepts that arose in Cybernetics, a book published in 1948 by Norbert Wiener, that proposed a theoretical model that would bring together the control systems in machines and bodies, and continued in fictional works such as Cyborg, by Martin Caidin, which inspired the Six Million Dollar Man series (1974-1978). In it, the protagonist is an astronaut whose broken body was rebuilt with components developed by the aerospace industry.
When he developed his doctoral proposal, Kim planned to analyze two categories: amputees and people who underwent organ transplants. “One involves adding onto the body machines or artifacts produced to replace organic functions. While the other involves a type of mixture of bodies, in which the organs of one body are used as replacement parts for other bodies,” he states. He soon realized that the categories required field methodology and had distinct cultural logics. “The stigma of the amputee is not the same as that of the transplant recipient,” he observes. He thus decided to restrict the focus of his research, comparing two groups of people with locomotor system disabilities—amputees and wheelchair-bound victims of spinal-cord injury—and investigate the transformations that new technologies impose on the social identity of these individuals. “Originally, they were similar categories,” says Kim. “In both cases, their social identity was depreciated due to the inability to maintain the body in an erect position and walk with their own two feet, and were seen as ‘crippled’.”
JOON KIMBrazilian wheelchair rugby championships JOON KIM
Pride
This has changed in recent years. On the one hand, many amputees avoided limitations and much of the stigma by obtaining innovative, highly resistant prostheses. And many of them exhibit their prostheses with pride, instead of hiding them, as was common in the past. “The emergence of prosthetic technologies that enable amputees to compete at the Olympic level has produced reactions that run counter to the general rule that one should avoid exposing that which causes stigma,” says Kim. And the image of stereotyped amputees attaining the cyborg dream—enhancement of the organic body due to hybridization with cybernetic systems—is increasingly frequent in the media. The best example is the South African athlete Oscar Pistorius, who was born with a congenital deficiency called fibular hemimelia and had both legs amputated, but obtained high levels of performance by running wearing carbon fiber prostheses. He was the first Paralympic athlete to compete in the Olympics on an equal basis with non-disabled athletes, in London in 2012. He attempted to compete in the Olympics in Beijing in 2008, but his participation was vetoed by the International Association of Athletics Federations. The entity decided that the prostheses would give Pistorius an advantage over his competitors. He appealed, and four years later he managed to reach the semifinals of the 400-meter race.
The situation is quite different in the case of people with spinal cord injuries. They are dependent on wheelchairs and most of the few technologies available have not yet been able to alleviate a number of side effects of paralysis, such as the lack of venous return and osteoporosis. The technology of robotic exoskeletons, which is still under development, embodies a rehabilitation promise similar to that of the prostheses of amputees, but for now it remains only a promise. Some products inspired by defense industry technologies have already been approved for clinical use, but they are very expensive. The Brazilian neuroscientist Miguel Nicolelis exhibited a prototype at the opening ceremony of the World Cup—a paraplegic kicked a ball. “The exoskeleton, contrary to the situation with many prostheses for amputees, hides the disability. The individual can stand, but there is little or no proven physiological benefit, unlike other therapies, such as induced walking with functional electrostimulation. The obsession with encapsulating them in robotic bodies, to the detriment of other therapies, seems more motivated by the symbolism of the possibility of walking on two legs than effective rehabilitation,” he says.
In the interviews the anthropologist conducted in the field, he found that individuals with spinal cord injuries are quite wary of the promise of exoskeletons. “Most think that much must still be done before they can replace the wheelchair,” he says. The exception, in general, is patients who lost their ability to move recently. “They are willing to do anything to walk again.”
JOON KIMMarco Aurélio Borges, discus thrower JOON KIM
According to Kim, the appeal of exoskeletons, contrary to the situation with prostheses to replace amputated limbs, draws upon ideals found in eugenics, the application of methods to systematically reinforce certain socially valued characteristics and eliminate other, socially rejected characteristics. Eugenics was appropriated by the racial policies of the Nazis, who preached death or sterilization of individuals considered “abnormal.” “The logic of robotic exoskeletons follows the same logic of genetic testing and selection of embryos for certain characteristics, in which eugenics has returned as a product on the market,” he says. “What is more important: ensuring accessibility for the wheelchair-bound or allowing them to stand up—even if the latter does not result in actual rehabilitation?” he asks.
Kim compares the pre-eminence of the right hand, the subject of a classic anthropology study, with the obsession with technology that can enable individuals with spinal cord injuries to walk again. The biological predisposition of humans to use their right hand, he says, is at the foundation of cultures whose symbolic system values the right side instead of the left. “The concepts of right and left were transposed into pure and impure. Left-handed people are repressed in various cultures and forced to use their right hand,” he says. He also cites sufferers of diseases such as congenital hypertrichosis lanuginosa, which covers the body of its victim with fine, soft hair and caused one patient to be nicknamed “wolf boy,” or epidermodysplasia verruciformis, the subject of a documentary entitled Half man, half tree. “There are some characteristics that are culturally associated with humans, such as smooth skin and limited body hair, whose absence is seen symbolically as something subhuman. The inability to stand and walk upright causes the same kind of discomfort, hence the social obsession with enabling the wheelchair-bound to stand,” he says.
Bioethics—an interdisciplinary field that studies the ethical dimensions of the ways of analyzing life in the context of scientific research and its applications—has been discussing the interaction between the human body and machines in a broader context, called post-humanism, which proposes the use of biotechnology, information technology, robotics and nanotechnology to overcome the limitations of the human body. According to William Saad Hossne, founder of the Brazilian Society of Bioethics, the concepts proposed by Raymond Kurzweil, of the Massachusetts Institute of Technology, stand out among those most frequently discussed today. He believes in the possibility of achieving immortality through processes that reverse aging or by transferring the contents of a brain to a physical medium beyond the body, like switching to new hardware. “In this context, the individual would no longer be human, but rather become post-human,” says Hossne. In the debate on this scenario, fears of the threat of dehumanization and the promise of transforming man into a perfected being commingle. According to Hossne, the bioethics discussion is complex and unable to formulate a recipe to follow, but could be useful on the subject of prostheses and robotic exoskeletons. “You have to consider the risks and benefits and analyze what objective is sought. You cannot say that an exoskeleton that enables someone to stand has little benefit. The person who will use the device must determine its merits. What is almost nothing to me could be of great importance to him.
Kim met and interviewed patients with spinal cord injuries at the Spinal Cord Rehabilitation Clinic of the Unicamp Hospital das Clínicas, coordinated by bioengineer Alberto Cliquet Junior, who has dedicated himself to the development of equipment for rehabilitation of patients with spinal cord injuries, paraplegics and quadriplegics, as well as the application of therapies using this equipment. He also attended four Brazilian wheelchair rugby championships. “I chose the sport because the participants are almost all quadriplegics,” says Kim. Fieldwork involved the production of photographic material of the interviewees. Most of the photos, including those illustrating this story, were funded by FAPESP under the “Photography, ethnographic film and anthropological reflection—practice and theory” category of the thematic project The film experience in anthropology (No. 09/52880-9), coordinated by Professor Sylvia Caiuby Novaes, of the USP Laboratory of Image and Sound in Anthropology. “Working with photography was essential to obtaining access to them. Initially, they reacted with suspicion. I showed them the results and was able to become closer to them than if I had requested an interview and asked questions,” he explains.
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