Traveling to a concert three and a half hours away requires planning, which is all the more true when my disability enters the equation. Between securing transportation, finding an accessible hotel room, and making sure the venue is accessible, some might deem a trip like this one not worth…
Embracing My Inner Alien
— Kevin Schaefer
Kevin Schaefer (he/him) is a writer, podcaster, and lover of all things pop culture. Diagnosed with SMA type 2 at the age of 18 months in 1995, he shares a vast array of hilarious and eye-opening stories from his life with a neuromuscular disability. He works as the associate director of community content for this site’s parent company, Bionews. He also hosts the SMA News Today Podcast. 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.
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Like many pop culture enthusiasts, I currently devote my Thursday nights to the HBO Max series “The Pitt.” Hailed as the most realistic medical drama on TV, the show follows an emergency department crew in a Pittsburgh hospital, led by veteran physician Michael “Robby” Robinavitch (played by Noah…
“A hero — not the hero we deserved, but the hero we needed.” This line from a Batman movie aptly describes the life and legacy of Judy Heumann. The prominent disability rights activist, who died March 4 at the age of 75, remains a hero in every…
The HBO series “The Last of Us” takes place in a dystopian world where zombie-like creatures roam the Earth 20 years after a mass infection wreaked havoc on humanity. Its main characters, Joel (Pedro Pascal) and Ellie (Bella Ramsey), travel across a post-apocalyptic America in an attempt to…
The 2021 Netflix movie “Awake” imagines a world in which a mysterious catastrophe wipes out all electronics and takes away humanity’s ability to sleep. Mass hysteria ensues within hours of this apocalyptic event, as people long to let their minds and bodies rest. Citizens turn against one another,…
When I was younger, I enjoyed the hyperactive nature of the teacup ride at Disney World. My mom hated it, but my dad was willing to accompany my siblings and me on this headache-inducing extravaganza. Spinning around inside a giant teacup from “Alice in Wonderland” was enough to entertain a…
A few years ago, I started listening to comedian Chris Gethard’s podcast, “Beautiful Stories From Anonymous People.” The premise of the show is that people call in, and whoever gets through talks with Gethard about any subject they want for an hour. The only condition is that callers…
“Yesterday, All my troubles seemed so far away, Now it looks as though they’re here to stay, Oh, I believe in yesterday.” Among the countless hits by the Beatles, “Yesterday,” released in 1965, has stood the test of time as one of the most revered and influential songs in history.
I listened to 78,978 minutes of music and podcasts in 2022. Thanks to the popular feature Spotify Wrapped, I and millions of users can look at a summary of our listening habits each year, for better or worse. Some may find my avid consumption of pop albums and…
“Your 60s you’ll have a major surgery, the music is still loud but it doesn’t matter because you can’t hear it anyway. Seventies, you and the wife retire to Fort Lauderdale, you start eating dinner at 2 o’clock in the afternoon, you have lunch around 10, breakfast the night before.”…
“Pneumonia! It’s been a few years. How’ve you been? Sorry to be blunt, but I’d rather you not stick around for too long since you’re a real pain in the butt.” Fortunately, my most recent encounter with my old acquaintance was relatively brief. I spent one night at the hospital…
The other day, I had my annual evaluation with a nurse to make sure I’m still disabled. This is one of the things that those of us who use government services for caregivers just have to do. It’s no secret that having a disability is a full-time occupation. Fortunately,…
On the last day of this year’s Cure SMA conference, I sat on a panel called “It’s a Wonderful Life” with other adults in the community. The cheeky title is meant to reflect the notion that adults with SMA can and do have fulfilling lives. It’s a bit ironic,…
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