LAUSANNE — Given everything that’s happened since, it’s easy to forget that back in 2008, South African sprinter Oscar Pistorius was involved in another attention-grabbing case that went well beyond the world of athletics.
That year, in Lausanne, Switzerland, the Court of Arbitration for Sport ruled that Pistorius, nicknamed “Blade Runner,” could participate in international competitions. The decision overturned a ban previously issued by the International Association of Athletics Federations.
The star athlete, who was born without fibulae and had both his feet amputated when he was just a few months old, used carbon fiber prosthetics specially designed for running. Because he kept beating able-bodied runners, Pistorius eventually drew the ire of athletic executive bodies, which concluded that his blades likely gave him an unfair advantage.
Pistorius isn’t the only prosthetics user to make a name for himself. Amputee Aimee Mullins, an American athlete, actress and model, swears by her artificial limbs, which allow her to choose her height on a given day: either five-feet-seven, or six feet. “Permanent pedicured feet,” she quipped in 2011. “It’s a real bonus. And I don’t need to shave or wax.”
Some might argue that prosthetics can actually turn amputation, such an obvious disability, into a decisive advantage. Maybe. Maybe not. What Pistorius and Mullins do make clear is that prosthetics are changing — quickly and thoroughly. No longer inert appendixes, they can now be ultra-sophisticated devices with engines, microprocessors and sensors that promise not only to repair the human body but to improve it too.
Exceptions to the rule
But these two examples are by no means ordinary cases. The experiences of Pistorius and Mullins have little to do with the lives of ordinary amputees. That’s because there’s a huge gap right now between the technological promise of prosthetics, on the one hand, and the reality of the disability, on the other. That gap was precisely the subject of debate during a recent symposium in Lausanne.
“In the media, the amputee always has a young body,” says Valentine Gourinat, a Ph.D. student in bioethics at the Universities of Strasbourg and Lausanne. “The person is glamorous, someone who was struck by a dramatic accident but will overcome the handicap thanks to technology.” She says amputees are also portrayed as heroes: soldiers, for example, who were wounded by explosions. They’re always young people “whose achievements then become a form of battle, a life lesson.”
In the real world, most amputees are much older — and not in the physical condition of Olympic athletes. They’re people “who are around 60 years old on average and who, because of their poor health, will never walk again,” Gourinat says.
In the meantime, not a single month goes by without a new prosthetics model appearing. The products are invariably presented through the prism of technological performance. Some are thought-controlled. Others are produced from 3D printers, aiming to restore tactile sensitivity or adapted to sporting activities.
“Our entire imagination focuses on these extraordinary technologies, so much so that we’re forgetting about amputees themselves,” the Ph.D. student notes. “We need to show reality as it is, and not only as we want to see it.”
Missing the point
This disconnect between promise and reality has caught the attention of other researchers too. “Like all my colleagues, I’ve read lots of scientific literature and have a very technical vision of the topic,” says Nathanaël Jarrassé, a robotics engineer at the Institute for Intelligent Systems and Robotics in Paris. “I was convinced technology would solve the problems of all these people.”
First-hand experience with amputees gave him a different view. “I arrived with my big ideas, asking them if they’d be ready to accept prosthetics with targeted reinnervation, a brand new cutting-edge technology. Some of them laughed in my face,” Jarrassé says. “I realized most of them didn’t care about the high-tech aspect. What interests them is comfort, for example, having fewer irritations around the stump, things I never thought about before.”
He says that research tends to move away from the basic needs of ordinary patients by focusing primarily on technological performance rather than on the small “details” that improve ergonomics and comfort. Part of the problem has to do with how research is financed. “To fund our work, we have to answer calls for projects on very specific topics, where only performance matters, while comfort is completely left out,” the engineer explains.
Neuro-prosthetics researcher Grégoire Courtine of the Swiss Federal Institute of Technology in Lausanne has similar thoughts on the subject. “The academic system mostly values and rewards approaches that seem revolutionary, at the expense of pragmatic projects that provide a real service to patients,” he says. Courtine says he’s currently rethinking the way prosthetics are designed, through “an environmentally friendly approach of neuro-prosthetics that puts the human being at the center of technological developments.”
Another side effect of scientific research is the hyper-specialization of laboratories. “We are robotics engineers,” Jarrassé says. “We don’t have the expertise to meet these needs in comfort. To solve this problem, cross-disciplinary approaches, with collaborations involving engineers, occupational therapists, dermatologist, sociologists etc, have been set up, most notably by the French National Center for Scientific Research (CNRS). Naturally, this adds obligations and complexity, but this “co-conception” is promising lead.”
Prohibitively expensive
High consumer costs are another concern. Technology, after all, isn’t cheap. How much do Oscar Pistorius’ “blades” cost? Around $33,000. A motorized knee prosthetic such as the C-leg? Around $22,000. An artificial retina? $110,000, including the operation. There are no doubt many patients who simply can’t afford such solutions.
“By allowing amputees to walk again, prosthetics are presented as a means of integration that will erase inequalities,” says Daniela Cerqui, an anthropologist at the University of Lausanne. “But the exact opposite is going to happen. They will make the gap even wider.”
Health systems and insurance companies in some countries cover new-generation prosthetics. In other countries, it’s the patient’s burden. Such was the case for Gérard Vouilloz, a Swiss man whose leg was amputated at the thigh after a 2001 motorcycle accident. His insurance won’t pay for a motorized C-leg prosthetic, only a simple mechanical prosthetic that gives him little autonomy.
“In France, I’d be able to have the C-leg,” he says bitterly. “In Switzerland, they prefer to give me a peg leg.”
