In this Family Partnerships essay, we describe the road to world-class Paralympic sports taken by a patient at our regional spina bifida center. Jason’s journey redefines differences in ability and provides an alternative to the medical prescription model for obtaining durable medical equipment. It illustrates a shift in the experience of assistive technology (AT) from medically prescribed to community-supported. Jason’s journey is but one manifestation of an emerging vision of health as a community outcome, mobility as a fundamental human attribute, and accessibility as a process that everyone experiences.
Taking medicine is fundamentally different from using assistive technology. A wheelchair is much more than a pill. It is an adaptation for mobility, daily activities, and social participation. This aligns with the World Health Organization’s International Classification of Functioning, Disability and Health,1 a framework that measures health and disability both at the individual level and as a social construct, in terms of participation. Unfortunately, in our medical system, prescribing a wheelchair typically launches a confusing amount of paperwork, multiple intermediaries, and, eventually, insurance reimbursement. The process can be disheartening, time-consuming, and isolating for patients and families/allies. Health care providers often have no idea if or when an appropriate wheelchair was dispensed. Delays or miscommunications can result in health complications such as pressure sores and missed school days. This situation is both a medical liability and a social injustice.
Equitable access to assistive technology is a human rights issue that impacts people with disabilities across the life course in our community and in communities around the world. The United Nations has recognized explicitly, in the Convention on the Rights of Persons with Disabilities, that focused effort on a global level is required to give all people personal freedom of mobility and other accommodations. The World Health Organization’s Global Cooperation on Assistive Technology (GATE) initiative is working on the development of standards, information systems, and workforce training programs to develop user-centered, community-based models for assistive technologies. The GATE initiative’s goal is to “improve access to high-quality affordable assistive technology for everyone, everywhere.”2 Supply chain disruption due to the coronavirus disease 2019 pandemic and increased risk from weather and political uncertainty are complicating factors. The retreat from globalization further underscores the need for community-based AT solutions.
Watching how patients at our spina bifida center employ AT and recognizing that everyone (not only durable medical equipment users) encounters the built environment by making individual adjustments as well as contributions, made us reconceive the prescription model. GATE’s community-based approach makes sense. Indeed, nonindustrialized communities around the world have a rich tradition of locally sourced AT innovation.3 Adaptive technology is a social phenomenon, not a pill, with community benefits that health care providers are well-positioned to empower and promote.
Jason’s journey to the Paralympics, as told from the perspective of a parent, a physician, and a patient/athlete, illustrates the community-supported AT paradigm.
We found out that Jason would have a disability when I was pregnant with him, and it was unknown what his life would look like. That unknown did not last long. It became clear early on that Jason liked moving. Jason has a rare congenital spinal disorder, Spinal Segmental Dysgenesis, and because of this diagnosis, he relies on his wheelchair to get around. Our basic parenting style has always been that Jason can do anything that the other kids can do; it just might look different.
Growing up, Jason had a love of sports and always dreamed of “running” Utica New York’s Boilermaker, one of the nation’s largest 15K road races. In 2012, his fourth-grade classmates decided to hold fundraisers to get Jason his own racing wheelchair. The next year Jason completed the Boilermaker!
After receiving this wonderful gift our family knew that we needed to do something to “pay it forward.” This became the vision for the J-Rob Foundation. We purchased a fleet of sports chairs that we bring to schools for everyone to try.
I met the Robinson family when Jason was born in 2003. An immediate need we addressed was getting Jason home from the hospital. Together, we added padding to a car seat, enabling his parents to make the 2-hour drive safely. This was the first of many adaptations we have witnessed. We learned about sit-skis, hockey sleds, and even specialized wheelchairs for ballroom dancing. Sometimes the sports equipment informs our medical recommendations. For example, sled hockey introduced us to adaptive clothing that maintains core temperature, wicks moisture, and reduces friction. All this is relevant to the prevention of skin breakdown in our patients.
Most of my patients will not advance to compete at the Paralympic trials as Jason did. But all of our preschool-aged patients now have ready access to hand cycles thanks to the J-Rob Foundation. These early experiences are formative. As a pediatrician, I know how important it was for Jason to see wheelchair racers at the Boilermaker when he was that age. Fast forward another 10 years: Jason’s high school was the first in our state to launch a unified track and field team so that Jason could compete as a wheelchair athlete for his school. I believe rethinking the definition of “team” to include athletes with and without disability is a direct consequence of community engagement with AT.
My competitions started with the Boilermaker when I was really young. If my fourth-grade class had not raised enough money for me to have a racing chair and for me to go to compete in that race, I probably would not have been at the Paralympic trials this summer. This was my goal and I reached it. The Paralympics is where everyone else is at their highest level. But to get to the top, you need a strong base. You need to learn about a sport when you are young, you need the right sports equipment, and you need a team, and I had that.
It is good to know that my successes get the word out so more kids will want to try it. Last year, our school district was able to run a girls’ 100 m wheelchair heat, which was cool because 2 years ago, I was the only wheelchair athlete and now we have 4 competing at the state level. Right now, I am training at the University of Illinois and want to get a degree in bioengineering so that I can continue to grow and be part of the adaptive sports community.
As told from parent, physician, and patient perspectives, Jason’s journey is propelled by an energy to “pay it forward”. Jason’s journey fostered innovation and brought people together. It is about network effects and building community. The term “network effect” refers to any situation in which the value of a product, service, or platform depends on the number of people who leverage it. Typically, the greater the number of participants, the greater the network effect and the greater the value created by the offering.4,5 Network effects are largely absent in the wheelchair-as-pill model.
Jason’s journey illustrates the community paradigm: focusing on the social context for AT leads to far better outcomes for many parties, beyond and including the patient. As articulated by artist and researcher Sara Hendren, “when we make adaptations a matter not only for individuals but also for societies, we can choose to let tools for assistance be unifying, giving all of us the power to envision abilities and inclusion.”6 Be it neighborhood bike rides or Paralympic competitions, the community approach to assistive technology both fosters and is the result of social participation. This is the network effect.
How can a regional spina bifida center serve as a catalyst for this phenomenon? Three strategies have emerged:
1. Maker Spaces
At our spina bifida center, we encourage families to join us in creating adaptive technologies with their own hands. Our local maker space was informed by pioneers like Cole Galloway, Jon Schull, and Alex Truesdell. These innovators conceive of adaptive equipment as a community phenomenon. Instead of telling a child and family they need to be the only people responsible for her wheelchair, for example, these organizations find ways to give local communities shared ownership of the challenges. Galloway’s Go Baby Go workshops teach high school students to adapt toy cars as a low-cost, kid-friendly alternative to a power wheelchair, which, like most durable medical equipment, costs thousands of dollars, takes months to obtain, can carry a social stigma, and is often quickly outgrown. Founded by Schull, e-NABLE is a volunteer community that links engineers, people who have access to three-dimensional printers, and clinicians to children with disabilities in communities around the world. Similarly, Truesdell’s Adaptive Design Association collaborates with science, technology, engineering, and math classes in schools to build student-specific accommodations. Using cardboard and glue, students discover how quickly and profoundly they can break through the physical, academic, and social barriers that separate general, gifted, and special education.
2. Loan Closets
Loan closets like the J-Rob Foundation’s fleet of wheelchairs are another important strategy. Adaptive sports equipment is not considered medically necessary by insurance. Adaptive cycles are neither readily borrowed from a neighbor nor easily picked up at a garage sale. Most families cannot afford $2000 for a hand cycle that is quickly outgrown. Sharing makes sense. Our spina bifida center has partnered with municipal parks to provide community-maintained adaptive sports equipment (such as sled-skis and hand cycles) at city parks and to make customizable adaptive technologies for independent living (such as ramps and screen-readers) available to our patients by networking with a publicly funded loan closet for early intervention providers.
Last but not least, Jason’s journey illustrates the importance of linking medical care with community resources for sports and recreation. Athletes have been powerful partners for our regional spina bifida center:
A local cycling club hosts a bike race to support our annual inclusion conference.
A power wheelchair soccer athlete provides peer advocacy at our center.
The Syracuse University Men’s Basketball team recruited 1 of our patients into a program called Team Impact (https://www.teamimpact.org/).
These collaborations expose the wider community to adaptive sports and inclusive recreation. The effects ripple. The reframing of the clinical intervention from a unidirectional prescription model to one that fosters community engagement both improves life for the child who uses the assistive technology and also enhances the larger community with a sense of purpose and appreciation of multiple forms of ability. If half of the students in a school know how to propel a wheelchair, for example, the person in it is now part of a group that has a vested interest in smoother ramps, faster clearing of snow in the winter, and better sightlines in the school auditorium. At our spina bifida center, we talk about physical activity and wellness by encouraging families to consider disability as a social construct. Then we connect them to community solutions.7 Teens with spina bifida use open-access tools (www.inclusiverec.org) to rate parks to see where both access and participation are most common. This example of citizen social science provides data for policy-makers as well as a useful guide for families in search of accessible outdoor recreation. The network effects benefit the entire community through awareness, visibility, and word of mouth.
Jason’s journey aligns with the International Classification of Functioning, Disability and Health, demonstrating the interplay between health and disability at both the individual and societal levels. The unifying theme when AT is conceived this way is a focus on ability, not disability. Community models for AT are emerging both bottom-up, in places like Utica, and top-down, from the World Health Organization in Geneva. All of these diverse efforts share 1 commitment: the health of an individual is inseparable from their community ties.
Ms Locastro contributed to the concept and design of the manuscript, critically revised the manuscript for intellectual content; Mr Robinson and Ms Robinson assisted with drafting the original manuscript and reviewed the manuscript; Dr Dosa conceptualized the project, drafted the original manuscript, and reviewed and revised the manuscript; and all authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.
FUNDING: Building Local/Global Spina Bifida Communities with Adaptive Design is a volunteer initiative that received funding from the Green Family Foundation, the Upstate Foundation, and the Madeline R. Cote Fund held at Upstate Foundation. Arise Adaptive Design is a maker space at Arise Independent Living Center in Syracuse New York. Funding for this maker space is provided by the Community Foundation of Central New York, including the J. Daniel and Diane Pluff Fund, the J. Henry and Martha DeBoer Fund, the Dorothy R. Shoudy Fund, and the Craig H. Neilsen Foundation. Virtual Park Tours for Community and Inclusion is an inclusive recreation program for high school students that received funding from the Jim and Juli Boeheim Foundation and the Upstate Foundation. The funder/sponsor did not participate in the work.
CONFLICT OF INTEREST DISCLOSURES: The authors have indicated they have no potential conflicts of interest relevant to this article to disclose.