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Spinal cord injuries can happen in an instant. One second, you’re carving powdery arcs down the frontside of Mad River, free-soloing in a rock gym, screwing around with friends on the sledding hill. And then you’re in a wheelchair. Permanently. Adaptive athletes are you and me and all our friends who had a supremely unlucky day. And if, like you and me, a person finds their freedom, release, and peace on the slopes, in the mountains, and nature, you can imagine how desperately that person would be to return to the places and activities they love.
Kelly Brush Foundation launched Active Project, the first online community by and for people with spinal cord injuries (SCIs) who want to participate in adaptive sports, their friends, family and caregivers, physical therapists, and occupational therapists, for that reason… to help people living with paralysis get back to being active.
“Before my injury, I basically lived outdoors,” says Anna Soens, 34, a “para” who, in conjunction with the Kelly Brush Foundation, made this movie about the role of skiing in her life. “Being outdoors is more to me than doing a sport. It’s my soul and identity. Finding freedom and challenge again was critical for my own mental health and reclaiming my identity.”
That’s what Active Project facilitates. It’s an online community where people with SCIs and paralysis can connect around adaptive sports, a place to learn about adaptive sports equipment and the subtle differences between ski models and bikes that may or may not be compatible with a specific injury. The site hosts an adaptive sports equipment marketplace. It also lets adaptive athletes know where they can go to ski, surf, bike, play basketball, and more. This first-of-its-kind community tool connects people with paralysis with funding for adaptive sports equipment.
“At the time of my fall, Active Project didn’t exist,” says Soens. “Finding out what was available, and who was available happened through Facebook groups and word of mouth. It took a lot of time and energy. I meet a lot of paras who were injured for 10 years before they got active because they didn’t have someone who could show them the ropes. Bringing mini-networks together into one larger, cohesive network is really important.”
Anna is looking forward to the chatrooms the site will incorporate soon. “The world of adaptive sports is so variable and nuanced for each person, everyone’s physical ability and their background are different, and there is so much you can’t learn from a book or inpatient rehab. Learning tips and tricks from others can make life easier and more fun, whether how to load a ski lift in a sit ski–Soens advises loading at an angle or something else.
Skiing is the original adaptive sport. Cycling, gym, and rink sports, like basketball and hockey, followed. By consolidating information on the many ways that people with SCIs and paralysis can play sports will connect people with resources early in their recovery, which Soens says is paramount in how you shape your post-injury outlook.
“With a life-changing injury, everything is thrown into doubt from taking a shower to career to relationships,” says Soens. “Finding someone in your corner, someone telling you the world is still your oyster, is so critical in shaping what you can and are willing to try post-injury. And Active Project facilitates that.”
When it comes to skiing, Soens says that of all the sports she now does, which includes mountain biking, rafting, sailing, and climbing, skiing is the sport that puts her on a level playing field with her peers. She wasn’t a skier before her injury. Still, with the help of the Kelly Brush Foundation and adaptive sports centers in Idaho and Oregon, she was able to take lessons and test different sit skis starting a year after her injury. “From the top, I can rip down like everyone else,” says Soens. “It’s freeing. I feel like an equal again.”
Active Project launched in January, and it had more than 700 participants and 30 organizations by the end of March. With 300,000 people in the U.S. living with spinal cord injuries and more than a million people with injuries and illnesses that necessitate adaptive sports equipment, this community could be a massive help as it grows.
Community is Soens’s top priority, and she looks forward to seeing who she connects with on Active Project. “People come into injury from so many different backgrounds,” says Soens. “The outdoors may be super intimidating, you might need someone who you really trust to help explore that. Having access to more peers and awareness of more adaptive sports, equipment and venues will make life better for a lot of people.”
To learn more, visit the ActiveProject at activeproject.kellybrushfoundation.org. To support the Kelly Brush Foundation, visit kellybrushfoundation.org.