Part 1: LOCAL POWER
There are moments when radical change is less about how than who, as power changes hands…and feet.
Graviel Nuel Jacobo smiles for the camera, with the photographers legs reflected in his glasses.
“The only way to understand how amputees feel is to put yourself in their shoes”. Photo by Alex Nuel Jacobo.
Graviel Nuel Jacobo is ready. His journey to start Centro de Prótesis & Terapia Física, the Dominican Republic’s first nonprofit prosthetics center, has been informed by his own experiences navigating the world with one leg. From his smile, you might not guess the challenges he’s faced, yet Graviel carries a clarity of purpose and dedication that comes from a deep understanding of the value of prosthetics. As he states it, “the only way to understand how amputees feel is to put yourself in their shoes”.
At age six, Graviel lost his leg when he fell under a train. He endured 11 years on crutches, making his way through school, volunteering at the local Buen Samaritano mission hospital in La Romana at age 13, and eventually coordinating a trip to the US to be fitted for a prosthetic at Shriners Children’s Hospital. This monumental accomplishment was short-lived: he outgrew the device, and was unable to return for a refitting because he was no longer considered a child. Even with support from his extended community, it took him several years to find another US center that could make a replacement. Meanwhile, dreams of creating a prosthetics center on the island began to grow.
Today, Graviel’s growing team provides local training and collects measurements for a waiting list of over 800 people. They track the need across the region, receiving requests from Bolivia, Venezuela, Colombia, and Haití, well aware that there are thousands more outside of the city centers. Throughout the pandemic, they have been building a new center for locally-manufactured devices and plan to convert a donated school bus into a pop-up mobile clinic for outreach to remote rural regions. “It’s not just about giving out devices, but creating community,” says Graviel. Physical and psychological therapy brings people together, and marks a path towards relationships and careers for those who have been recovering from trauma and healing in isolation.
Walking together, Graviel Nuel Jacobo encourages a young woman who is learning to use her new prosthetic leg.
“It’s not just about giving out devices, but creating community”. Photo by Alex Nuel Jacobo
How did Graviel make the leap from a marginalized youth to the founder and Director of Operations for an award winning national nonprofit? In short, open source. His tenacious determination joined forces with an emerging wave of open source designs, introduced to the Dominican Republic by a small motivated band of volunteers and educators in rural Maine.
Part 2: ON A MISSION
The Rotary club in Portland Maine has supported vulnerable people in the Dominican Republic for over 20 years. They began with projects on water filtration and hearing aids, and then expanded their scope to address the large number of people with limb differences. In the Dominican Republic, adult amputations are often a preemptive measure to avoid infection, and consequently much more common than congenital limb difference. Some amputations result from accidents involving industrial sugarcane equipment. A surprising number come from machete violence. The Rotary clinics often see people still in the early stages of recovery after traumatic attacks.
As the Associate Vice President for Development at the Maine Medical Center, John Curran’s job was to work alongside clinician colleagues who would volunteer on medical mission trips during their free time. Inspired by their stories, he joined the Rotary in 2011 and set out on his first mission trip.
“I wanted to get out of the office and make a difference in people’s lives,” recalled Curran. Touched by the level of need in the Dominican Republic, he helped develop a new international service program for free prosthetics, and he eventually served as program chair as well as president of the Portland Rotary. His passion for prosthetics outreach has remained a lasting achievement and guiding star.
The early missions to the Dominican Republic deployed the LN4 Hand, a one-size-fits-all design that provides some function for those with below elbow amputations. However, the mechanical aesthetics of the LN4 did not appeal to the local people. Researching alternatives, John discovered the e-NABLE community, a network of volunteers making free open source prosthetics. He reached out in 2015 hoping to find someone nearby who might offer advice. Dean Rock, a volunteer who had been involved since 2014, responded immediately; he lived one town away.
At a time when e-NABLE’s most popular cases involved “superhero hands” for children, Dean’s task was to consider the needs of working adults. He found himself evaluating the Rotary’s cases and joined their annual mission trip in 2016 (just in time for hurricane season). Through harrowing experiences in makeshift community clinics packed with people during the storms, Dean learned about the people, their resilience, and the design priorities for a new device.
It was at the Buen Samaritano mission hospital that Dean and the Rotary team first met Graviel. They encouraged him to pull together a community-led team in 2018 to provide local training, collect measurements, and develop a waiting list of people looking for devices. After 2 years obtaining permission from the health department, the project is now a formal internationally recognized non-profit. In addition to providing an important bridge between device users, local doctors, and NGOs, Graviel and his team are well positioned for leadership with device design, customization, research, and production, and are committed to supplying open source devices free of charge.
Part 3: EVOLUTIONARY DESIGN
I first met Dean Rock at EnableCON 2019 after following his posts in the e-NABLE forum from afar. He presented several new and previously unpublished designs, including a finger device for an oyster fisherman using fishing line and $3 of non-corrosive materials to withstand the demands of working in salt water. Charismatic and focused, Dean shared his projects with a confidence that comes not only from long hours of tinkering and a deep knowledge of materials, but also from a network of relationships with device users and doctors.
Even among e-NABLE’s wide assortment of volunteers, Dean is unique. After a career as a social worker supporting people struggling within the US healthcare system, he understands the limitations of hospitals and the challenges people face recovering on their own. In designing devices, Dean prioritized cultural values and took time exploring materials that could be printed in local skin tones with life-like aesthetics. Recognizing that almost everyone who came to the clinic had a smartphone, Dean began working on bionic designs in 2018. He determined 9v lithium ion batteries could last a day and be recharged with a USB C cable common to most cell phones. Inspired by the soft silicon used in phone cases, he tested flexible materials like Kodak Flex 98, filaments known to be super tough for daily use while feeling soft and maintaining grip friction – important for the humidity and heat of the Dominican Republic.
Dean was particularly intrigued by the idea of a locally produced low cost and light-weight device using off-the-shelf electronics. He introduced his early model as ‘an analog electric hand in a digital world’; an iteration of the Fusion Hand which used a linear actuator and a circuit based on a garage door opener. Capable of lifting a single sheet of paper or a 10 lb weight, the device costs less than $100 to produce, a fraction of the cost of professional custom bionic devices.
As Dean flew through his demonstrations at EnableCON, it was clear his designs were evolving quickly: he was presenting models that hadn’t been shared publicly but were already superseded by newer iterations with improvements. Dean described a modular casting technique for custom fitting devices he learned from a prosthetist at the Hanger Clinic, a novel approach that continues to impress and be underutilized. While other e-NABLE volunteers were waiting for recipients, Dean had laid out a plan to bring 70 devices on the upcoming trip to the Dominican Republic, and had brought in the University of Southern Maine to help with production.
Part 4: CURRICULUM PROTOTYPING
Professor Asheesh Lanba never wanted to become a plastics engineer. He joined the engineering department of the University of Southern Maine to work on alloys, but the brave new world of 3D printing had other plans for him. He is now the institute’s Director at the Composites Engineering Research Laboratory, as well as Principal Investigator of the Lasers and Materials Engineering group (LAME). “That’s what happens when you let students name your research group”, he joked at a recent e-NABLE community meeting.
As Dean and the Rotarian’s began exploring design aesthetics and increased production, Dr. Lanba recognized the educational value of the project for the engineering curriculum. He joined the Rotary in 2019 and the University of Southern Maine became the project’s Research and Development headquarters. Even during the pandemic, students were still able to work using 3D printing equipment from home and provide mass prototyping support. This work has become part of the curriculum for the university’s entry level design course, motivating over 50 students each semester to apply their engineering skills beyond the classroom and consumer marketplace.
Based on Graviel’s reports of need in the Dominican Republic, Dr. Lanba’s students are currently testing lower limb designs to benefit hundreds of people. Thus, a generation of engineers are now connected to a community of people in need who would otherwise be isolated and devalued within their own neighborhoods. In effect, the University of Southern Maine is following Graviel’s leadership to prototype a humanitarian engineering curriculum where innovation and learning are led by empathy.
Part 5: COMMUNITY FOUNDATIONS
What is it about this particular collaboration that has made it so successful? Four very different groups have come together, led by local understanding and emerging needs. Together they are doing what none can do individually. This may be a model worth replicating in other parts of the world, and offers some important lessons worth consideration.
Device User Leadership
Maker movements like e-NABLE are full of motivated individuals looking to make a change. They can navigate the technology, but good intentions in isolation can quickly become creative cul de sacs. Makers distanced from the individuals who benefit from their innovations can lose motivation and focus. Without device user leadership roles within an inclusive community of peers, makers working by themselves can get off track, spin their wheels, or reinvent the wheel by duplicating existing designs. Meanwhile, device users wake up everyday with adaptation work ahead of them, unrestricted by specific hobbies or semesters. They are in the driver’s seat, intuitively aware of a range of conditions and situations. And they need peers exploring similar daily challenges, other device users who are piloting devices in a leadership position. For device users, bridging access locally with cultural and social innovations involves all the observation and patience and creativity as their maker friends.
Community Cross Membership
As e-NABLE’s distributed model has shifted from individuals working in basements and garages towards teams and NGO chapters within local networks, it is increasingly clear that peer support and leadership is a necessary ingredient for device users in this recipe of empowerment. Local community is key on all levels, and leadership rests with those with the deepest experiences. Suddenly, it’s not about shipping objects but listening over a long period of time. The finish line of delivery becomes the starting point for direct experience. Where communities meet is where the magic happens, where the streams flow together.
Graviel began as a solitary 6 year old on crutches; now he’s the leader of a nationally celebrated non-profit. His model of community-based care has been shaped by international rotary medical missions collaborating with e-NABLE volunteers and harnessing low-tech open source designs. The process has inspired a university professor to join the rotary, to shift careers and lead students to conduct cutting-edge research testing polymers. A new generation of engineers are motivated by projects with direct impact, where innovation is guided by empathy. From this foundation, each individual works in concert with their local communities, with cross membership aligning core values, supporting reciprocal relationships, and contributing to shared ecologies.
Together into the Unknown
This is not just about qualified individuals. In many ways, it’s the process that is creating the experts. Many of the skills and experiences needed for this partnership were unknown at the onset. They were only recognized as teams formed and diversified. As priorities and leadership continues to shift, the skills change hands, fostering the new roles that are needed across and between organizations.
Despite pandemic delays, John Curran and the Portland Rotary club have continued to collect cases from their partners in the Dominican Republic and prepare for the next mission. They are excited about their new bionic model, which has been tested and appreciated by a half dozen early users. Dean Rock is printing and sharing designs with the e-NABLE community, including a new central tension cable for the latest upper limb iteration. He is refining a lower limb design with Dr. Lanba and his students, who are now back in the lab studying the material qualities of TPU, and beginning a promising new round of mechanical testing. They all look forward to feedback from device users. Armed with a long list of device requests and a clear vision for the future, Graviel is now building a new center in La Romana, the epicenter of a larger revolution to equitably empower community through open source.
Through the publishing of this article, the 3D printing company Flashforge was inspired by the work of the team and is planning a partnership to support the open source clinic in La Romana. To learn more about the ongoing efforts as they unfold, you can follow Centro de Protesis & Terapia Fisica on Facebook or reach out directly via email.