Abstract
We Carry Kevan is a memoir by Kevan Chandler about a remarkable trip he takes with a group of friends around Europe. Kevan is a young man living a vibrant wheelchair enabled life with spinal muscular atrophy (SMA). SMA is a form of muscular dystrophy passed genetically to both himself and his older sister, which causes increasingly diminished muscle function over time. Kevan began displaying signs of SMA as a toddler, and by the time he wrote this book, he required a custom motorized wheelchair for mobility, as well as assistance with activities of daily living. By reading his story, it immediately becomes clear that SMA is only one component of Kevan's multifaceted life. Kevan views his life's experiences through the lens of his Christian faith, which also forms the backbone of his support system and community. This book is written for a wide general audience and shares a perspective on living with accessibility challenges.
The title of the book is literal in that Kevan asks six of his “able-bodied” friends to carry him in a modified hiking backpack throughout Europe so that he can leave his ever-present wheelchair behind and view the world unhindered, the way many others see it. Kevan's friends carry him physically and they support his intimate needs such as showering, toileting, and repositioning him several times every night to prevent pressure ulcers. They also offer personal space when Kevan is knocked down, both literally and figuratively. For example, in Paris, a group of elderly women ask Kevan for permission to pray to Virgin Mary for his healing. This reminds Kevan of experiences where strangers wanted to fix him rather than appreciate him for who he is. He writes, “outside my wheelchair the world looked very different, and with that revelation, I expected the different-looking world to see me differently. But that wasn't the case.” Kevan's friends carry him out of the church and they allow him the space to grieve the unpleasant experience and transport him to the next activity—joining an enthusiastic crowd dancing in the streets of Paris. Kevan once again becomes the focus of attention, but this time, he is valued for his uniqueness rather than judged for what he lacks.
Kevan's narrative does not attempt to hide his disability; rather he chooses not to dwell on it, and instead writes about the joys (and complications) of traveling and of being with a special and devoted group of friends. Throughout the memoir, Kevan's friends, old and new, share vignettes of their experience with Kevan during this trip. These excerpts emphasize the strong bonds Kevan formed throughout his life. One acquaintance writes that “what he…invited me into was a gift so powerful, and so gentle—that of truly grasping what it is to love one another, and the unexpected life and exuberance it creates.” Kevan is optimistic, even when addressing and reflecting on some of the physical and emotional hurdles he experiences in his travels.
I am a cripple, small and frail, feeble. I'm supposed to sit in a wheelchair. That's safe. I'm supposed to take supplements and maybe work on a computer. But instead, I let a bunch of medically unqualified musicians (God help ‘em!) put me in a backpack and carry me around the world.
Kevan now acts as an ambassador for individuals living with physical disabilities. Since returning from his trip he has founded a nonprofit in the same name, We Carry Kevan, that seeks “to redefine accessibility as a cooperative effort.” Through his writing and his advocacy, he is challenging societies' unconscious biases toward people living with physical disabilities. He shows what is possible with the support of community and planning.
As a palliative care provider, after reading this book I noticed myself asking young adult patients different questions. Kevan had taught me to ask more broadly about community, listen for hurdles that cut dreams short, and find ways to support interdependent independence. This book is a poignant reminder that palliation, the act of alleviating pain or suffering, is unique for each individual. For Kevan, suffering comes when others underestimate his dreams and define him by his disability instead of defining him by his spirit and unique personality.