By Sarah Watts
At just six months old, Veronica—a shy, sweet girl born in one of Uganda's poorest villages—endured an unimaginable loss. When her sleeping mat caught fire due to a spark from a nearby oil lamp, Veronica lost her right arm and suffered third degree burns over most of her body. Veronica lived without a functional limb for the next six years, as medical care was almost nonexistent in her village.
But in 2017, at seven years old, Veronica's life changed dramatically thanks to a team of volunteers stationed at a small liberal arts college in New York state. The team—a chapter of a global volunteer network called e-NABLE—was able to gift Veronica with three 3-D printed prosthetic arms, complete with moveable fingers. Within moments of receiving her arm, Veronica drew a picture of herself in crayon, complete with her new prosthesis and a superhero cape. On the paper, she christened herself “Super Healer.”
Veronica's story is moving—but it's nowhere near unique. Across the globe there are an estimated 30 million people like Veronica in need of prosthetic limbs—many of them children, and the majority of them in developing countries that do not have a prosthetics program in place. To combat this, a global collaborative organization called e-NABLE has risen to meet the global demand for limbs, matching people around the world in need of prosthetic limbs with volunteers who have access to 3-D printers. And slowly but surely, thanks to the power of an Internet connection, they've been able to provide thousands of children and adults with the limbs they need to live a fuller life.
If you want to know how e-NABLE got its start, you have to go back to 2011, when artist and designer Ivan Owen, one of the group's original co-founders, made a mechanical hand to wear to a steampunk convention. The hand was large and metal, and Owen could manipulate each of the hand's metal claws by pulling his own fingers. When Owen uploaded a video of his creation in action, it caught the attention of Richard, a carpenter in South Africa who had lost some of his fingers in a woodworking accident. Richard had been trying to design a prosthetic hand of his own, and contacted Owen for help with its design.
For the next year, Owen and Richard collaborated online to build a prosthetic hand, with Owen flying down to South Africa to work with Richard in person. Around the same time, Owen started developing a mechanical hand for a South African boy named Liam, who had been born without fingers on his right hand due to a genetic syndrome. In July 2013, after Richard and Liam's prosthetic hands had been completed, a 3-D printing company called Makerbot donated two printers in exchange for permission to create a video about Richard and Liam's prostheses. When Makerbot uploaded their video, the community that would become e-NABLE first started to form.
“One night in 2013, when I should have been preparing for one of my courses, I was browsing the Internet and came across a video on YouTube about a South African carpenter and how he teamed up with Ivan Owen to make a prosthetic hand,” says John Schull, president and co-founder of e-NABLE. “Usually comments on Internet videos are really demoralizing, but most of the comments under this video were like, 'this is so cool! I wish I could do this!'” On a lark, Schull created an interactive map and posted it in the comments section. “The map allowed people to put different colored pins on there, depending on where they were in the world,” Schull recalls. “If you knew someone who needed a prosthetic hand, you could put one color pin on the map. And if you had access to a 3-D printer, you could put up another color pin.” That night, Schull said, there were six pins on the map. Within six weeks, there were over 70. “It started as a thought experiment, but soon I had people asking me, 'now what do we do?'”
Together with Owen, Schull launched the community in earnest—first through a social network, and then later on its own collaborative hub. With one click, Schull says, anyone across the globe who needs a prosthetic hand can link up with a team of volunteers to help provide it, along with a catalogue of open-source instructions on how to make several different models, all available on the hub. Best of all? The devices are free, Schull says: “We decided that we're truly a volunteer organization that only gives these products away. It's allowed us to do things that conventional enterprises can't do, and freed us from a lot of regulatory restraints.”
Since its launch in 2013, e-NABLE has grown into a global phenomenon, with 190 chapters in 52 countries and a volunteer base of over 1600 members. So far, the organization has been able to provide “thousands” of prosthetic limbs, primarily for children, in countries where healthcare systems are struggling to keep up with the demand. One of the biggest benefits, Schull says, is seeing how its reframed the concept of prosthetic hands for their youngest recipients—kids who now are ecstatic at the prospect of getting their own superhero hand: “The psychological function of these hands we're providing is at least as important as the mechanical function. These kids turn out to be the luckiest—the other kids are envying the kid with the superhero hand, and that's a very different situation than being 'that odd kid.'”
But e-NABLE isn't just for kids. Anyone around the world can use their Internet connection to access the platform. “In Pakistan, most of the people who use our devices are adults who lost limbs in agricultural accidents,” says Ben Rubin, e-NABLE's media coordinator. “In Thailand, there's a huge community of older people who have e-NABLE prosthetics due to Hansen's disease. It just depends on the needs of each specific community.”
Since e-NABLE's launch, other “open-source” organizations have also been on the rise. In 2015, for example, California biohackers started the Open Insulin Foundation, an open-source model for insulin production working to provide the drug for diabetics in the United States and beyond. While the Open Insulin Foundation isn't associated with e-NABLE, Schull says that the open-source model of medicine is something that e-NABLE has helped pioneer—and it's quickly catching on. Within a few decades' time, medicine across the globe may look closer to e-NABLE's vision than ever before: free, democratic, globally accessible—and just a few clicks of a keyboard away.