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.

 

Pity and Empathy: There Is a Difference

A few months ago at church, an usher came up to me and made a gesture that was — in his mind — “nice.” Seeing me, the young guy in the wheelchair, he placed his hand on my shoulder and said in a loud voice, “Let me know…

Why I’m Grateful for My ‘Normal’ Education

“Normal” isn’t exactly a word that describes anyone with SMA. We do things differently than most people, have different challenges, and live unabashedly abnormal lives. (Just look at my diarrhea and disability column from last week.) Nevertheless, there is no reason why those of us…

The Woes of Equipment Malfunctions

  In most superhero comics, movies, and TV shows, there’s usually an arc at some point in which the hero temporarily loses his or her powers. This happens in “Spider-Man 2,” “Supergirl” (season two), the first “Thor” movie, and in issue 12 of the comic book crossover “Crisis…

On Finding the Right Healthcare Team

As a lifelong SMA patient, the sheer number of people on my healthcare team rivals the size of my immediate and extended family combined. Keep in mind that I come from a southern family with multiple cousins, aunts and uncles, grandparents, and even a couple of…

How Theater Helped Shape Me

Given how much I loved movies, playing make-believe, and any kind of storytelling, it’s no surprise that I had a desire to get on stage early on. Before my elementary school started its drama club, I acted in church plays, put on my own productions at…

National Lampoon’s ‘Schaefer Vacations’

When you or a family member has SMA, chaos management becomes second nature. You come to expect the unexpected, and you learn to adapt to whatever absurd obstacles come your way. Case in point: the majority of my family’s vacations. You could easily…