There was a period when the last thing I wanted to do with my summer was spend time with other people who have SMA. As a moody, cynical teenager, I really couldn’t care less about engaging with any kind of disability community. I wanted nothing more than…
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…
When I was a kid, I was skinny as a stick. Part of this was because I got sick so often, but the other reason was that I was a notoriously picky eater back then. I had many health issues at the time — but the…
I’ve known for a long time that my post-college life would be a little unorthodox compared to that of my friends. While most people who graduate either enter the workforce or go to grad school, anyone with SMA (or an equally severe physical disability) knows that finding…
The other night I was hanging out with a friend from college at a downtown pub. As we sat down and ordered a couple of beers, an older gentleman at a nearby table came and sat next to us and asked me about my robotic arm. I…
Last fall, in a creative writing course, I wrote a fictional letter that was mostly a satirical piece about my experiences with caregivers. I wrote it from the perspective of a father of a disabled son, who was complaining to the care-giving agency they were using. Aside…
As much of a geek as I am, I can’t recall the first movie I saw in theaters or the first comic book I ever read. Yet, I do remember a time in fifth grade when I heard a song that blew me away and gave me…
I’m often asked by people how traveling works when you have SMA. The simple answer is that flying is a pain, and it’s much easier to do road trips. Over the years my family and I have gone on road trips to Florida, New York City, Missouri, Oklahoma, Colorado, Texas,…
As I wrote in a previous column, the unpredictability associated with SMA is in many ways the hardest aspect of the disease. I’ve broken my leg several times, but this was the first time the doctors allowed the bone to heal on its own, instead of casting it or performing…
To say that SMA can throw a curveball at you at any given moment is like saying that the “Star Wars” prequels could’ve benefited from more rewrites. There are some things that just go without saying, and every person who has SMA knows how unpredictable and difficult this disease…
A few weeks ago I had a conversation on Twitter with a guy about the recently announced Batgirl movie, which has Joss Whedon set to write and direct. The movie is slated to arrive in a few years. While the prospect of a Whedon-helmed Batgirl movie is enough to…
One Wednesday night when I was in high school, either freshman or sophomore year, my youth pastor, Todd, said something that has stuck with me ever since. We had youth group meetings at our church every week, and on this particular night Todd spoke about how Christians can stand out…
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