Editor’s note: This column discusses some of the plot of Netflix’s documentary film “Crip Camp.” A new Netflix documentary called “Crip Camp” opens with an eclectic credits sequence set to the tune of “For What it’s 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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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…
A blue body cast covered me from my waist down. The pain in my right leg skyrocketed each time I moved. I intentionally tried to avoid going to the bathroom, because I couldn’t endure the misery of transferring out of my bed. Just the sight of my mobile…
Almost every aspect of my life with SMA comes with a risk factor. Whether I’m traveling out of town or going to a movie with friends in the wintertime, I’m putting my already compromised immune and respiratory systems at risk. My health has improved significantly in recent years,…
I spend the majority of my time in my power wheelchair. Other than my weekly water therapy sessions, I’m usually in my chair from when I get up in the morning to when I go to bed at night. My…
The music of Bruce Springsteen, David Bowie, and a bunch of movie soundtracks regularly play in the background of my home office. Thanks to Amazon Alexa technology, I can easily control my music and podcasts with simple voice commands. I always like to listen to…
Feb. 29 is Rare Disease Day. On that day people are encouraged to spread awareness about a multitude of rare diseases and conditions, from SMA to cystic fibrosis to Charcot-Marie-Tooth disease. The umbrella…
On Super Bowl Sunday in 2013, I attended my first meeting at NC State’s student newspaper, Technician. I went on a whim with zero journalism experience. My only hope was to maybe write a few movie reviews for the publication. Little did I…
Ever since I was a kid, some of my favorite actors have been those who weren’t always in front of the screen. Given my love of animation and motion capture technology, the way that people like Andy Serkis, James Earl Jones, and the late Robin Williams created so…
For most of my adult life, I’ve been fortunate to maintain my physical health. Aside from a bout with pneumonia in early 2018 and a broken femur the previous year, I’ve experienced an overwhelmingly positive health streak since…
Amid its heart-pounding fight sequences and images of Michael B. Jordan carrying car tires in the middle of the desert, the film “Creed II” offers a poignant representation of disability. In this umpteenth sequel to the original “…
I just finished watching “The Ataxian,” a documentary from 2015 about Kyle Bryant, a bicyclist living with Friedreich’s ataxia (FA), a rare disease which shares commonalities with SMA. The film showcases a 3,000-mile bike race across the United States completed by Bryant and…
A few months ago, my colleague Brianna Albers wrote an excellent column about ableism in interactions with strangers. People pity those with disabilities and say things such as, “I’m so sorry for this horrible thing you have to live with.” I’ve…
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