Embracing My Inner Alien - a column by Kevin Schaefer

wheelchair malfunction, movie theaterKevin is a writer, podcaster, and lover of all things pop-culture. Diagnosed with SMA Type 2 at the age of 18 months, he shares a vast array of hilarious and eye-opening stories from his life with a neuromuscular disability. In addition to his weekly columns, he works as the Director of Forums for this site’s parent company, BioNews. Kevin is a graduate of North Carolina State University and lives with his parents in Cary, NC. People regularly mistake him for Tony Stark, on account of his intellect and advanced technological equipment.

 

Let’s end the infantilization of people with disabilities

“Hey, buddy, don’t get a speeding ticket!” “When was his last X-ray?” “Oh, wow, you work!” For whatever reason, society loves to infantilize disabled people. It’s practically a hobby for some people, be they medical professionals or middle-aged pedestrians looking to test their comedy skills when they see a wheelchair…

SMAers are worth more than a stare

People-watching is one of my favorite things to do at Disney World. It’s a free and accessible activity, and it comes with more surprises than any of the hundreds of rides at the parks. Whereas “It’s a Small World” gets repetitive after a while, observing the public pitfalls of…

Having creative outlets sustains me in life with SMA

Actor Ethan Hawke has a TED Talk titled “Give yourself permission to be creative.” In it, he speaks not just to professional and aspiring artists, but to every person’s need for human expression. He talks about how creativity exists in things like leadership, and how embracing our creative…

Living with SMA makes me feel like an outsider

When I was in middle school, I became acquainted with Ponyboy, Sodapop, Johnny Cade, and the other “Greaser” boys from the pages of “The Outsiders.” Since its publication in 1967, S.E. Hinton’s seminal novel has continued to resonate with generations of teenagers and young adults from all walks…

My nonlinear life with SMA means I’m constantly evolving

The 2014 film “Boyhood” caught the attention of audiences and critics upon its release for its wildly experimental approach. Writer-director Richard Linklater spent 12 years making the movie, following the main character, Mason, from elementary school until he went away to college. Linklater used the same…