At the latest pop culture convention I attended, I waited in line for 45 minutes on a Saturday morning with a host of like-minded geeks. But the line wasn’t to meet my favorite celebrity, voice actor, or comic book creator. It was just to get on the elevator. Having gone…
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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In her anthology “Disability Visibility: First-Person Stories from the Twenty-first Century,” the late activist and writer Alice Wong offers profound insight into the power of storytelling. She says in one of her essays, “Storytelling can be more than a blog post, essay, or book. It can be an…
On the last day of the annual Cure SMA conference, the closing session is always a panel called “It’s a Wonderful Life.” It features a group of adults with SMA talking about their daily lives and answering audience questions. Its core theme is that there are plenty of…
My 6-year-old niece, Lily, made an astute observation while we were waiting in line at Disney World to get a picture with Daisy Duck. “Is that a person in a costume?” In a place designed to capture the imaginations of children, leave it to Lily to break the spell with…
As a kid, I organized my hundreds of action figures in buckets. I kept them displayed on a wooden shelf next to my bed, and I knew the exact location of each figure and accessory. Anytime the figures were out of my reach, I relied on the patience of…
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…
The 2002 science-fiction film “Minority Report” imagines a world in which a specialized police unit uses psychic technology to detect crimes before they happen. Tom Cruise plays a detective who’s part of the “Precrime” division, and it’s his job to arrest would-be murderers and criminals. Based on the…
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…
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…
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…
Machines are a vital and everyday component of my existence. There’s the BiPAP machine pumping air into my lungs when I go to sleep. It sits on my nightstand above my cough assist, another device designed to help improve my respiratory function. Then there’s my Jaco robotic arm,…
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…
“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…
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