We Carry Kevan – Redefining Accessibility


We Carry Kevin in China

Last year I had the great privilege of meeting Kevan Chandler. I want to use Kevan’s own words as an introduction: “I was born with a disease called Spinal Muscular Atrophy. I am supposed to sit in a wheelchair, … and maybe work on a computer. But instead, I let a bunch of medically unqualified musicians put me in a backpack and carry me around the world.”

Speaking with Kevan and hearing his story, made me rethink the words ‘limited’ and ‘inaccessible.’ Kevan has redefined the idea about accessibility by creating the non-profit ‘We Carry Kevan working to change the way people living with disabilities think about access by redefining accessibility as a “cooperative experience.”

This idea came when Kevan and his close friends set off on a three-week trip across Europe, creating a make-shift backpack that allowed his friends to carry him on their backs. In doing this, he was able to go to places that had previously been out of bound. By thinking outside the box, everything became accessible because they did things differently. This opened a world of possibilities, including a trip to China last year.

As Kevan says, “whether you have a disability or not, we need each other, no one can go do it on their own. People helping people is where true accessibility comes from.” It was a humbling moment for me and proves that the bond of friendship and power of community can carry us all through the toughest of challenges. I invite you to follow Kevan’s journey and be inspired to consider his liberating perspective: https://bit.ly/2PwkWza.

As we celebrate Rare Disease Day on the rarest of days, February 29, let us consider our own views of limitations and accessibility. What “shoulds” can we overwrite by taking a different view? How can we support and rely on each other to redefine what we are capable of? How can we carry each other and also embrace that we can be more by allowing ourselves to be carried by others? A huge thank you to Kevan for raising the bar for all of us!



Categories: Patient Advocate Patient Engagement Rare Disease

About The Author [ Juliette Rothera ]

Juliette Rothera is the Marketing and Operations Associate at VOZ Advisors. Juliette is in charge of the social media and marketing strategy, as well as conference strategy. She also offers logistical support.