The mobility movement
Apr 25, 2017 01:44PM ● Published by Steven Hoffman
Gallery: Go Baby Go Mobility Village [3 Images] Click any image to expand.
By Steven Hoffman
Cole Galloway considers social mobility to be a human right, and he seemingly never stops moving in his effort to make sure that as many people as possible get to exercise that right.
When he's not teaching, Galloway, a physical therapy professor at the University of Delaware, can often be found hard at work on groundbreaking research at the university's STAR campus, working closely with traumatic brain injury survivors and their families. Or he's writing papers or applying for grants to continue his work on the innovative GoBabyGo program. Or he's making presentations about community-based brain science and traveling to support GoBabyGo chapters around the world.
Galloway is constantly in motion, inspired to help those who find themselves in situations where their own mobility is restricted―most often because of a physical ailment or an accident. No matter where he travels or how far the reach of GoBabyGo extends, the heart of the program remains at the University of Delaware’s STAR campus and the people who are the reason that the GoBabyGo program is constantly evolving.
“I will go out and talk at different places,” explained Galloway, “but then I need to come back and hear about the realities of life for people surviving brain injuries, and what they go through day to day. Everything goes back to social justice and mobility.”
If the ability to move around means that the world offers the promise of amazing things, the inability to move around, then, means that that promise is being taken away. Galloway refuses to accept that for the millions of children and young adults who have significant mobility issues. He is using what he likes to call “grounded, grass-roots science” to help change their lives for the better.
“When you’re immobile, it’s bad for your brain,” Galloway explained during an interview in April. “It’s bad for you socially. When you can’t move around, you can’t get from Point A to Point B―that's obvious. But you also lose your freedom of expression. You can’t make a mark on the world. The ability to play, the ability to move around the planet, is a right―it’s critical.”
In Galloway, traumatic brain injury survivors and children with mobility issues have an advocate whose energy is boundless. That's exactly what Galloway wants their possibilities to be―boundless. His background, experiences, and education make him uniquely qualified to serve people with mobility issues.
Galloway grew up in small towns in Georgia, Alabama, and Mississippi, and maintains a sense of small-town kindness, even though he has traveled and lectured widely.
“I came from an extended family of artists, scientists and storytellers,” he said, explaining that his mother was an American and Southern literature teacher, while his father was a concert pianist who later became a professor and went into the insurance business. That blend of the sciences and the arts can be found in Galloway's approach to his work.
When it was time to go to college, Galloway was interested in studying biology, primatology, and anthropology―for a time, he wanted to do the kind of work that Jane Goodall is famous for.
“I love grounded, grass-roots science,” he explained. “I love watching people move. We’re fragile warriors and we maintain our own fragile friendships. It takes very little movement differences for other primates to take a step back.”
He was an honors graduate of the University of Southern Mississippi, and then was on a Physical Therapy degree at the Medical College of Virginia before doing a NIH Training in Motor Control Neurobiology funded Ph.D. at the University of Arizona. He joined the nationally recognized Physical Therapy faculty of the University of Delaware in 2000.
Galloway is best known for his work developing GoBabyGo!, a hands-on program that he started that helps children and adults with serious mobility challenges. He was deeply impacted by seeing children who did not have the ability to play and move around like their peers. Each child was facing a unique disability perhaps suffering from cerebral palsy or another genetic syndrome that restricts development and movement. Galloway had researched how children learn to move their bodies. With no commercially available power wheelchairs for children younger than the age of three, it would be very beneficial to have something that would allow them some mobility. The children needed this mobility to help with their development, and Galloway heard from the families of these children how important this was. Every day that a child spent unable to move was another day when the gap widened between their development and their typically developing peers. Tick tock, tick tock. To Galloway, that was unacceptable.
Without a high impact strategy, the pace of scientific research can be slow. One day, Galloway and a research assistant purchased some of the typical ride-on cars and trucks that can be found in a toy store. These cars are popular with children for obvious reasons. Just because a child has a condition that restricts his or her mobility, that doesn't mean that the cars wouldn't be popular with them, too. The cars just need to be adapted for each child's individual abilities. So that's what Galloway and his team did. They started customizing these cars so that they could be enjoyed by children, regardless of their physical impairments. The cars can even be designed to accommodate the changing needs of those using them as they age or their abilities change. There are now approximately 6,000 such cars being utilized around the world. But that was just the first step for the GoBabyGo program.
Today, on the University of Delaware's STAR Campus, traumatic brain injury survivors like Corey Beattie and Reston Turns work in the GoBabyGo Café, serving bagels, coffee, or ice cream to customers while simultaneously incorporating several types of therapy into their regular activities as they work to recover from injuries suffered in automobile accidents.
The impetus for starting the GoBabyGo Cafe was another local traumatic brain injury survivor who wanted to have more mobility and the ability to stand up for longer periods of time. She was interested in working in a cafe setting, and Galloway and his team wanted to make that possible.
Galloway is always looking to push the boundaries for what's possible for the traumatic brain injury survivors that his team works with. He collaborated with Enliten, LLP., a Newark, Del. company that designed and manufactured a harness system that allows individuals to safely stand and move around, freeing them up to focus on other tasks without the fear of falling.
At the time Corey was injured in the automobile accident in October of 2010, she was a senior in high school who was planning to attend a culinary school. She spent years working hard on physical, occupational, and cognitive therapies, but her recovery accelerated at the GoBabyGo Cafe.
Her mother, Marie, said that working in the cafe was a wonderful experience for Corey.
“Conversing with customers, making sandwiches and cooking in her home kitchen has not only helped her regain her physical strength but confidence and feeling of self-worth as she works towards realizing her culinary dream of becoming a chef,” Marie explained. “The limited resources for integrated therapies, socialization and the bridge to community integration is the largest isolating factor in an individual's recovery. Caregivers and survivors are looking for enriching opportunities that provide a greater, fuller quality-of-life for their loved ones and themselves.”
The progress that Corey was making was so great that it exceeded expectations.
“We thought there was a good chance that it would be fun and that we would learn a lot,” Galloway explained.
With the cafe being so successful, the next step was install the harness system in a home to see what benefits that could provide. In the early part of 2016, two harnesses were installed in Marie's home―one in the kitchen and another in Corey's bedroom. Soon, Corey was able to get her own breakfast and stand at the counter to prepare a salad. It was an important next step in her recovery from the accident.
The GoBabyGo cafe and the harness house both exceeded expectations. Galloway, and graduate student Devina Kumar work closely with the caregivers and families to maximize what is learned from the program.
“All along, it’s been a learning experience about the daily lives of people with mobility issues,” Galloway explained. “I call what we do blue-collar science.”
Don’t ask Galloway about his goals or his vision for what the future might be for people like Corey. Galloway insists that his own goals don’t matter. His vision for the future is largely meaningless. What matters is what the TBI survivors dream of for themselves, and what the caregivers dream for. So he asks them regularly: What do they want to do this week, next week, next year?
Galloway and his team are currently working with a small circle of traumatic brain injury survivors who are determined to reach their potential―to exercise their right to social mobility. Corey wants to cook, so Galloway sees it as his duty to help her along her way. Reston wants to plan events. Stacy wants to have her own line of greeting cards.
“They were so quick to tell us, in their own way, what they want to do,” Galloway said.
Galloway said that it's very important to listen to survivors and their families and caregivers.
“What they provide are different, innovative experiences,” he explained. “A blind person can talk about a regular day for them and you will be riveted because it’s such a different experience than the one that you have every day. To you its new, its innovative.”
Corey will come up with new recipes and think of things in an innovative way because of her injuries. There's something to be learned from that.
The work that is being done on the University of Delaware's STAR campus is having a wide impact. The research that is being done today will help those with mobility issues in the future. Each new piece of information represents a step forward.
There are now more than 60 GoBabyGo chapters all around the world. Some of the chapters focus on building GoBabyGo cars for children. There are also FIRST Robotics teams networking together on the effort. Other chapters focus on organizing workshops to spread the word about the GoBabyGo programs. Marymount University, the University of Central Florida, the University of North Florida, and Oregon State, among others, are tapping into and furthering the work of the GoBabyGo program.
GoBabyGo has even established a relationship with Fisher-Price, the large toy company that makes some of the cars and vehicles that are modified to suit children with special needs.
“They are very supportive of what we do,” Galloway said, explaining that one of the GoBabyGo cars, a purple Jeep, is on display at the Smithsonian Institution American History Museum’s Spark Lab.
With each new university or business or person who gets involved, there is increased hope for people like Corey and Reston.
“It’s a movement,” Galloway said.
Galloway is the recipient of the American Physical Therapy Association’s 2017 John P. Maley Award. But, of course, when your daily work involves improving the lives of traumatic brain injury survivors or children with mobility issues, it’s not ever about awards. It's about helping to make a difference.
“It’s not about me,” Galloway said. “There’s a need, and there’s a community that’s willing to work.”
Galloway considers the mobility village to be the next natural progression of the GoBabyGo program, and the team is hard at work developing the concept. Galloway is planning to utilize several houses in a row that will allow the traumatic brain injury survivors with moderate to severe mobility challenges to have an even more immersive experience. They can spend time there helping each other handle all the daily chores that are a part of life.
The goal will be to work closely with each person and help identify and remove the barriers that are holding them back.
“For the first time, they will have to start deciding a million different things on their own,” Galloway explained.
Outcomes won't be measured only in the number of steps in a day or by a score on a cognitive test, but will also include the number of meaningful events that a survivor has experienced such as how many party invitations or new friends were made in the last year. The survivors won't be patients, but lifelong learners―like the rest of us.
Undergraduate students, graduate students and faculty from various disciplines could help in the mobility village, providing a unique learning experience for University of Delaware students.
“This is, I really think this is, what the future of classrooms will look like,” Galloway said.
Galloway views the mobility village as a way to connect the STAR campus operations to the rest of the University of Delaware campus.
Devina S. Kumar, MS, PT is a PhD graduate student at the University of Delaware. She serves as the co-principal investigator of the GoBabyGo Cafe and harness house research projects, and she believes that both are producing results that will be useful to families around the world.
“We hope our research is able to change more lives,” Kumar explained. “The Go Baby Go Café is a great opportunity for someone to explore a new rehabilitation model that we think can bring changes across physical, social and cognitive domains. The harness house can make someone more functionally independent in their own house. Now, with the harness, [traumatic brain injury survivors] have the opportunity to move about the house like they did before the injury.”
She talked about the experience of having Galloway as a mentor and adviser.
“Working with Cole has made me realize the importance and mobility and independence,” Kumar said. “He is community driven and very passionate about making a difference in people's lives across the globe through GoBabyGo! Lastly, as an adviser, he has always guided me to not only think outside the box, but never lose sight of the fact that traumatic brain injury survivors’ families are an integral part our research and their voice matters.”
Alan Turns said that his son, Reston, has benefitted greatly from working in the cafe and being one of the people to have the harness system installed in their home to help with the various rehabilitative therapies. The Turns family is thankful to have access to the University of Delaware’s STAR campus, and the GoBabyGo program.
“For our family, having STAR Campus has been a godsend,” Alan Turns said. “We waited until September to begin the GO Baby Go cafe study. That was a two-month study and Reston continues to volunteer there two days a week. We have since installed a 13-foot-by- 20-foot harness in our house and are currently participating in the six-month Harness House study. We have met so many wonderful people through STAR, and one in particular is graduate student Kate Bailey, who is using a pilates workout to help strengthen Reston's core and reduce his Ataxia. Reston also receives his speech therapy at STAR.”
Marie Beattie, who worked tirelessly to get Corey the necessary therapy after the accident, said that Galloway’s work has been invaluable.
“The University of Delaware's support of Dr. Galloway and his visionary approach is what traumatic brain injury survivors and their families need,” Marie said. “Dr. Galloway’s tireless efforts to think out of the box and think beyond the clinical environment of physical therapy, occupational therapy, and speech therapy to living life in a real world environment is what we all seek―injury or not. The GoBabyGo Cafe and Harness House have given Corey a chance to participate in this enriched environment. The harness may be the assisted device helping Corey's progress, but what's happening under the harness is what's important. She has improved because she is now participating in living her life, she is no longer an observer of life. That is the most valuable gift every person deserves.”
Encouraged by the successes of the cafe and the harness house, Galloway can’t wait to see the results of the mobility village.
“It's going to take a bit of time, but within a year the results will be amazing,” Galloway said. “I think the mobility village will be a beacon.”
For Galloway, the entire experience offers him a chance to extend his research as he grows personally and professionally. He learns, and he gets to help. And he gets to share the results of the research with others so that even more people can be helped.
Galloway said, “This is a journey I really want to take with my colleagues, my friends, my extended family. They have a lot to teach us. It's not my vision. It’s never been my vision. It’s theirs. They deserve a shot. Let's go!”