A few days ago, I met with an occupational therapist to evaluate the effects of my Spinraza (nusinersen) treatments. So far, I have had six injections of this therapy, and I have noticed things like increased energy and flexibility in my muscles. Still, I don’t…
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…
The holidays are when I spend time with family and friends, put off Christmas shopping until the last minute, and relentlessly make fun of Hallmark movies. While it’s true that Hallmark flicks aren’t as remarkably terrible and cultlike as 1978’s “The Star Wars Holiday Special” (…
Between smartphones, artificial intelligence, and social media platforms that allow people to post cat memes and political ramblings, it often feels like we live in a never-ending episode of “Star Trek.” Things that were once science fiction are now components of our everyday reality.
Recently, I attended one of my favorite events of the year, the North Carolina Comicon. I’ve attended this show for five years in a row, and every staff member, guest, attendee, and wildly imaginative cosplayer who goes is family to me. This…
One morning in August 2013, I woke up with a pain unlike anything I had felt before. It was excruciating, relentless, and in my mind, totally unprovoked, as I hadn’t done anything bad to my body the night before and I wasn’t sick. The worst part:…
On Halloween this year, I dressed as the Marvel Comics superhero Daredevil. Blind lawyer Matt Murdock by day, and superhuman vigilante by night, Daredevil strikes fear into the hearts of his enemies as the guardian of Hell’s Kitchen. He is one of the most iconic…
As a kid, I was notorious for dropping my cherished action figures on the floor. Instinctively, I would turn to my older brother Brian to pick them up for me. A little irritated that I had interrupted his marathon viewing of SportsCenter and “Cops,” he had…
I went to Barnes & Noble by myself while my mom went to dinner with a friend. I go out unaccompanied quite often, which requires a little extra effort on my part. When alone, I have to make sure I can maneuver my chair and…
I turn 25 in a few days, which for me is a pretty substantial accomplishment. After four broken legs, two major surgeries, multiple run-ins with pneumonia, a couple of pills shoved up my butt, and far too many catheters, I’ve managed to carry on. I figure…
At the time of writing this, it’s been one week since the company I work for lost one of its true titans. On Sept. 26, our senior managing columns editor, Serena Lawrence, passed away. Beyond being one of the best editors I’ve ever had the pleasure…
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…
Dragons, elves, magic, and a deaf female general are just a few of the things you’ll find in Netflix’s “The Dragon Prince.” The new animated fantasy series from the head writer of “Avatar: The Last Airbender” has already garnered many positive responses from critics…
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