Empower SCI is like summer camp meets a second round of inpatient rehab meets college life. Every summer, for the last two weeks of July, ten or so people living with spinal cord injury (who are usually 1–5 years post injury), along with 60+ volunteers, take over a wing of dorms on the Stony Brook campus on Long Island to pursue a quest for independence. I was lucky enough to attend this organized madness for both 2017 and 2018 sessions thanks to a grant from NYC Spinal.
Relearning How to Adult
Many people, who like myself, sustain spinal cord injuries, depend on home health aides and/or family members for every basic life function. Depending on our level of injury, this can include anything from bathing to dressing, feeding, using the bathroom and more. Needless to say, this is usually a devastatingly infantilizing experience for a grown person who has spent years managing his or her own life and bodily functions. Part of Empower’s mission is about giving people like us the tools and confidence to increase our level of independence.
It all starts by cutting the umbilical cord of whatever help and routines we have grown accustomed to. So we must show up at the program ALONE.
It’s not that we can magically learn to care for ourselves overnight of course. So there’s an army of volunteers, many of whom are physical or occupational therapy students, or in related fields, who will stand in as our caretakers (and co-campers and friends).
The differences are A) everyone present is encouraging us to attempt to do things for ourselves that we have never done before, and B) since we each have very different needs and have never worked with any of the volunteers previously, we must direct every single facet of our own care (something we tend to take for granted at home—plus, the directing can itself be an increased form of independence).
Essentially, it’s a safe environment to PRACTICE skills that will increase our independence.
A Learning Partnership
And the learning goes in all directions. We learn from each other. We learn from the volunteers. The volunteers learn from one another (in particular, students new to the field learn from masters who have been practicing for many years). And the volunteers learn a lot from us!
Our days at camp are filled with a packed program. We have all sorts of educational workshops; physical, occupational and career/counseling therapy; and of course, the highlight for many campers, a slew of adaptive recreational activities (yoga, biking, kayaking, swimming, quad rugby, painting, surfing, etc.). Then there are also the impromptu card games, sing-a-longs, and off-campus trips to grab ice cream or even an adult beverage.
A Healing Community
For me, personally, it was an amazing and powerful experience. First, it is healing to be surrounded, 24/7, by a community of people who are going through similar struggles – struggles that can be overwhelming and isolating. Second, I made some progress on my personal goals of increasing how much I am able to participate in my own bathing and dressing and I was able to note an improvement from my first year to my second year in my performance with the adaptive sports.
Adaptive Sports Challenges
Quad rugby was one of my personal challenges. It’s an adaptive wheelchair game where participants have to use a specialized manual chair. I’m a power chair user. Year one, I could hardly push myself from one end of the court to the other. Year two, I was able to keep up with the game, racing back and forth between the two goals with the rest of my team. Also, year two, I was able to go out on the Long Island Sound in a one man kayak– something that is usually only done by paras, not quads like myself. The organizers saw me struggling against the high winds, but I stubbornly persisted and refused help and was finally able to make it back to shore unassisted. I felt very accomplished.
NYC Spinal Grant to the Rescue
I am very thankful for the sponsorship I was given by NYC Spinal because they provided me with door-to-door transportation both years. Without it, I never would have been able to participate, because no one in my family owns an accessible vehicle and there was no other way I could have gotten myself and 10 boxes of luggage, medical supplies and equipment from NYC to Stony Brook, Long Island.
I hope they will continue to sponsor other participants in the future so that more people will be able to have their lives positively impacted by this very special program.
Learn more about Empower SCI here.