Kevan Chandler, was born with a rare, and progressive neuromuscular disease: spinal muscular atrophy (SMA). At age 33, he needs assistance with almost all activities of daily living, from eating and dressing to toileting and moving about. He can use one hand to manage the control of his motorized wheelchair. He is as small as a child and weighs just 65 pounds.
And yet… his presence is amazing. Meeting him in person was not at all what I expected. He is mature, funny, a gifted speaker, devoid of self-pity, and seemingly of self-consciousness. His writing is beautiful, and filled with both faith and fun:
The apostle Paul reminds us that outwardly we are all wasting away but inwardly we can be renewed.
Read what he writes about being hauled off a flight by an airport assistant who plopped him, brooking no discussion, in a manual wheelchair:
“The thing about a manual wheelchair, versus my powered one, or the backpack, is a matter of control and perspective. In my wheelchair I am captain, though low to the ground, a height to which I’m accustomed. The backpack leaves me subject to my carrier’s whims but my, the view is phenomenal! A manual wheel chair has no redeeming value whatsoever, especially since it’s inevitably three sizes too big for 95 percent of truly disabled people. The picture is this, then: a Muppet propped haphazardly in a rickety wheelbarrow, his head tipped back to stare at the ceiling or flopped forward to see nothing at all.”
Or reflecting on the virtues of a local diner — “They serve pancakes, eggs, and hash browns.. and mac and cheese is listed as a vegetable.”
Kevan has a blog, a TED Talk, a children’s book and the startling book, The Hospitality of Need. But his most recent book, chronicles in a joyous, funny and easy to read, his trip through Europe, being carried the entire time by his friends in a backpack. Have we not all puzzled how to work a strange shower? But how about having no control as a person carrying you runs and jumps barriers all in an attempt to get to the right subway station in Paris? Or how about staying overnight in a country flat, in the UK and watching on TV the Glastonbury music festival with that year’s lead being ColdPlay? We Carry Kevan is a true story, an unforgettable tale of radical friendship, adventure, and the kind of love that carries you, literally and figuratively. There is mischief and wisdom in this book. I learned of Sir J.M.Barrie, author of Peter Pan, and of his gift of hope to the children of the world. He swears his statue spoke to him, saying “Kevan, you’ll be all right,” and writes, “The Lord agreed, and I believed them both.”
We Carry Kevan, contains some short reflections from the people Kevan met along the way who were awed, encouraged, and filled with hope for their own lives. If Kevan—vulnerable Kevan—had the courage to live so fully knowing that there is both worse to come and better to come, could they not do the same? We are not alone, even though there are downs as well as ups. There are people to help and to celebrate and to live and laugh with even if you break your nose in Ireland.
In We Carry Kevan, readers journey with a man seeing the world from a new perspective—head-high for the first time—and with the extraordinary friends who made that view possible. What unfolds is more than an inspiring travelogue; it’s a portrait of deep, joyful friendship, sacrificial love, and what it means to belong. Along the way, Kevan and his crew encounter the kindness of strangers, the mystery of shared humanity, and the undeniable presence of grace. Read We Carry Kevan, a man born with SMA (Spinal Muscular Atrophy), an as-of-yet incurable disease, who is living the gift of life.
More on SMA
Spinal Muscular Atrophy is a disease that causes muscle weakness, which increases over time. It was not until 2016 that the first (albeit difficult to administer) medication was approved. This medication can slow the course of the disease, but it does not fix existing damage, nor is it a cure. More medications have since been approved and gene editing is a very real possibility in the near future.
