Q&A With Kevan Chandler: Adventurer, SMA Author and Nonprofit Founder

Kevan Chandler always dreamed of going to Europe, but knew that he’d have to develop a creative solution in order to make his dream a reality. Chandler has SMA type 2, and while he knew that traveling abroad in his wheelchair would present numerous obstacles, he came up with an alternative plan.

In 2016, several of Chandler’s closest friends carried him using a customized backpack as they made the trek across Europe. Because Chandler weighs less than 70 pounds, he was able to fit into this specially designed pack and remained in it as he and his crew ventured to France, England and Ireland.

The 31 year-old adventurer also brought a film crew along to document the trip. Recently, Chandler has been doing a speaking tour around the country to screen the documentary and talk about his journey, as well as his nonprofit organization We Carry Kevan. He’s also written a book about the experience called The View From Here, which he hopes to publish soon.

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Images c/o Kevan Chandler

SMA News Today caught up with Chandler to talk about the trip and the work he’s been doing since returning to Fort Wayne, Indiana, where he currently resides.

Kevin Schaefer: What were the biggest challenges you faced on your journey in regards to having SMA? Especially being away from your chair for so long, how did you adjust to being fully dependent on your friends?

Kevan Chandler: The greatest challenge for me had to be just that — letting go of control. When I’m in my wheelchair, I may be limited in where I can go but I am “captain of my fate,” as it were. In the backpack, I can go practically anywhere, but I’m at the mercy of those carrying me. One freedom is not greater than the other, and oh my goodness, these guys are carrying me on their backs! What love is this! I can’t respond with selfishness, but must put the others before myself.

The trip had to be not just about me, but a shared experience among the whole team of friends. This was a struggle, but isn’t it the struggle of our hearts, each and every one of us? As I let go of control, as I leaned into their love, as I enjoyed the experience together with this band of brothers, it was difficult at times but so much more rewarding and fulfilling than if I’d been alone or it was all about me.

KS: I know you worked hard to get the backpack customized to fit your specific needs, but every SMA individual is different. Now that your nonprofit is working to make more backpacks for other muscular dystrophy families, how do you ensure that each one is tailored to meet the needs of each person?

KC: Well, that’s what’s taking so long! But really, we started with the design that worked for me and then said, “Now, how do we make it fit everyone?” The final product will be adjustable in all of its major facets, from head to toe (or neck support to stirrup, in this case) and everything in between. There will be a weight and height limit, for the practical aspect of carrying safety, but even in those cases, we hope to work with individuals to come up with other ideas. The backpack is great, but it’s not the be-all and end-all. It’s what worked for me and will work for some others. But the heart, the core, of what we’re doing here is getting creative and courageous in finding new means of mobility.

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Images c/o Kevan Chandler

KS: What does your daily life look like? You’ve certainly kept busy since the trip ended, between writing your book, launching the nonprofit and doing the speaking tour. With all that going on, what are your main priorities on a daily basis?

KC: I just got off a two-month tour, so my priority this week is finding some downtime, ordering a pizza, and watching old Robert Redford movies. But my daily life, though, usually looks like… a buddy comes by the house to get me up and showered, then I head downtown (about a two-mile walk). This is a wonderful time to collect my thoughts, have some prayer time, and so on.

There’s a coffee shop downtown called Fortezza, where I set up shop. My day there consists of working on a draft of my latest book project, answering emails, and meeting various people. Everyone in town knows that’s where to find me, so folks come and go all day to chat. I like to wrap up the day by either going home to be with roommates or meeting friends at the pub for dinner. While sub-priorities may vary from “meet this person” to “finish this chapter,” depending on demands of the day, I hope that my broad stroke priorities are to grow personally and encourage others. It proves a full day, but a rich one indeed.

KS: Now you’re planning a trip to China, and it appears that you have no intentions of stopping. That said, what advice do you have for SMA individuals who want to travel the world or do adventurous things, but who feel too restricted by their condition or circumstances?

KC: I would tell a disabled person that your travel life and home life reflect one another. If you can cross your street, you can cross an ocean. One may take more effort, but they come from the same spirit. So, check your heart and mind, check your attitude, your mindset and the mindsets of those around you. My parents raised me to look at what I wanted to do and what I could do, and then find a marriage of the two to make the impossible happen. Take that perspective, and go for it! My friend Dallas says, “You’re stronger than you look.” To both disabled and able-bodied folks, I’d point out that our strength is not our own, thank goodness. It’s a strength that comes from God and those around us. So press into that and enjoy what comes of it.

Image c/o Kevan Chandler

For more information about Chandler and his work, visit his nonprofit’s website at www.wecarrykevan.com.

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SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.