“Every 4 1/2 minutes, a baby is born with a birth defect.” That translates to 1 of just 33 babies being born with a defect in the U.S. Of these, about 1,500 babies, or 4 out of every 10,000 babies are born missing a hand or arm (“upper limb reduction”). While crude replacements have been available for several hundred years, there has been a revolution in the past few years in producing prosthetic devices. Due primarily to the simultaneous advents of the DIY Maker Movement and the development of affordable 3D printers, costs have come down by orders of magnitude, and functionality has exploded.
My interest in prostheses was piqued when I was a child, accompanying my father, who crafted artificial limbs c. ~1960, as he visited patients. Back then, “hands” were basically a hook or two that enabled someone to grasp an object relatively crudely. I spoke of this a bit in my recent post on thalidomide, which showed children born with absent or small, flipper like limbs (phocomelia), from this drug. The thalidomide tragedy highlighted the need for the FDA and consumer protection.
You might imagine then that my interest was just piqued at Science Online 2014, a conference that again proved to be and varied and inspiring, when I met Nick Parker, an 18 year old who happens to make prosthetic hands for kids when he’s not in school.
We met on our first day at Science Online, where we visited a robotics lab at NCSU, seeing how Dr. Greg Sawicki’s PoWeR (Physiology of Wearable Robotics) Lab team is working to make a robotic ankle and exoskeleton to help stroke patients learn to walk again. They are using very thin carbon fiber for the exoskeletons, and non-invasive surface electromyography (EMG) to boost movement in response to slight muscle contractions. They are also able to assess the energy used by patients with various assistive devices.
Later, Nick pulled a little pink plastic hand out and showed me, as a puppeteer would, how pulling the strings on this printed prosthesis would enable a disabled child he is working with to grasp things.
While serious birth defects or accidents are often devastating, advances are dramatically changing what it means to be disabled—or “differently abled,” as many prefer.
For example, one of my favorite patients is a young man, John Michaels, who became quadriplegic in an accident many years ago, as a teen. Despite this, and with only minimal shoulder movement, he completed degrees with high honors in psychology and sociology, drives, and coached sports. He now works helping others live independently, and has an incredibly full life, enriching the lives of all those whose lives he touches.
At TEDMED last year I met Sue Austin, a woman who describes her wheelchair as liberating, and even goes deep sea diving in it. The video of her dive is incredible.
Then last fall, I learned about another compelling story. Michael Brown, the owner of Maestro Frameworks in Pittsburgh, generously set out to adapt a bicycle for Michael Trimble, a young man born without arms as a result of the Chernobyl nuclear disaster in 1986. Despite his severe birth defects, Mike is able to care for himself and do many activities, using his toes instead.
With my childhood model and the interest piqued by Austin and Trimble’s stories, the time was ripe for my learning more about working with disabilities and the amazing things that people are able to do now.
After the visit to the PoWeR lab, the “converge” keynote talk continued the theme of differing abilities. First, Dr. Meg Lowman (@CanopyMeg) set the stage, speaking of the sorry state of STEM (science, technology, engineering, and mathematics) education in the U.S., which ranks 48th globally, according to the World Economic Forum.
Lowman added that 10% of undergrads are mobility impaired but only 2% of STEM professionals are. So @CanopyMeg developed an outreach program that meets a range of needs—STEM, disability mentorship, and canopy research. Her program enables young people with ambulatory disabilities to participate actively in her canopy research. Rebecca Tripp, a young woman who became paraplegic after an accident, spoke movingly of how transformative her experience in the canopy was: “It made me realize that a wheelchair does not define who I am” and that having a physical disability needn’t preclude you from having a career in science. (You can hear another interview with her here.) During the 10 week pilot summer program last year, Tripp and seven other students climbed 117 trees and extracted and researched 4,200 tardigrade specimens, finding four new species of these tiny “water bear” microscopic invertebrates in the process.
The final converge session brought Nick back to address the entire conference, along with Dr. Jon Schull. The “3d Mechanical Hand – Maker Movement” began with a prop designer in Bellingham, WA and a carpenter in South Africa. After Richard van As cut off his fingers in a horrific accident, he was determined to make himself new ones. Searching the internet for months, he happened onto Ivan Owen's post of his mechanical hand. The two began collaborating over the internet and Skype, before meeting in person, when Owen went to South Africa briefly, so they could work together in the workshop. Coincidentally, Van As had just learned of a little 5 year old also in need of a hand. So Van As and Owen set out to make Liam a hand. The two men continued to work as collaborators. Critically important, they decided to make their plans freely available.
Soon thereafter, Rochester Institute of Technology’s Jon Schull noted that while occasional prostheses were being made for individuals, there was no coordinated system for bringing those in need and those who might help together. Schull initially created a Google map and asked if anyone had a 3-D printer and wanted to help. He watched the numbers rapidly grow. He then developed a Google+ community, E-nable, which continues to grow. All of the work is open source, with an emphasis on collaboration, cooperation, and innovation.
Now, individuals are working together to help design and make their own prostheses. One early participant is Peregrine Hawthorn, a 19 year old in need of a prosthesis. Last year, living in Seattle, he worked on-line with his father in Virginia, and within 2 months had gone from an idea to a functional hand, that they continue to modify.
E-nable is now a world-wide community of people helping others in need—bringing people together to help design, print, and build hands for others.
While the cost of a commercially produced hand would range from $10,000 to $80,000, the raw materials for a printed hand can cost as little as $50, enabling kids to have a succession of new hands customized as they grow.
E-nable notes: ‘There are people around the Globe – 3d printing fingers and hands for children they will never meet, classes of high school students who are making hands for children in their local communities, a group of people that are risking their lives to get these devices onto people in 3rd World countries and new stories every day of parents working with their children to make a hand together.
The seed was planted and the Tree is branching out, growing and becoming more beautiful than ever imagined!”
These printed mechanical hands rely on wrist movement to activate the grasp of the fingers. Initial designs were for growing children (the Cyborg Beast), and for adults who want more strength (Talon). Nick is now working with a young girl who lacks a wrist to craft a hand that will be activated by elbow movement (Grace Arm).
Nick and Jon stressed that this has been self-sustaining in part because of the gift of intense satisfaction those who print and fabricate the hands receive from those in need. It is a gift economy, fueled by the DIY/Maker movement and transhumanism. Just think for a moment about all the tasks of daily life you perform with your extremities, and I think you can easily imagine just how transformative these collaborative world-wide movements are!
But E-nable is now anticipating growing pains—there are organizational/structural issues, licensing, and liability issues that need to be addressed to scale up the project without diluting the ground-up, cooperative spirit of the organization.
You can also help @canopymeg by spreading the word about her program. Meg Lowman (@canopymeg) is looking for students with disabilities for her next science internship, working in the canopy. You can learn more about the Kansas program here or contact her CanopyMeg at gmail.com.
Shea photo courtesy Frankie Flood and Shea's family
GAIT lab photo by Marc Hall, courtesy Greg Sawicki
Nick Parker at Science Online - Judy Stone
John Michaels photo courtesy John Michaels
Waterbear photo courtesy Bob Goldstein and Vicky Madden/Wikipedia
Jon Schull photo courtesy RIT/Jon Schull
Margaret Mead quote courtesy Jen Owen
In my Nature photo courtesy Meg Lowman
"Molecules to Medicine" banner © Michele Banks