If someone asks me to speak in front of hundreds of people, I say “no problem.” Stick a needle in my neck for a Spinraza injection, and it’s no big deal. When it comes to traveling across the country for an SMA conference or…
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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My late friend and colleague Michael Morale liked to utter a phrase to me whenever I had an aquatic therapy session: “Get strong.” Michael spoke with a thick Texan accent and the utmost sincerity as he emphasized those words. He fully believed that…
Even before its theatrical release, the new film “The Upside” garnered its fair share of criticism from a number of disability activists on social media. Its main controversy stems from the fact that it’s yet another example of an able-bodied actor playing a…
Across social media platforms right now, there’s a trend where people post pictures of themselves from 10 years ago next to current ones. The idea is to see how much people have changed over a decade and to laugh at embarrassing old images. It’s been entertaining,…
“Well, I certainly hope this little incident hasn’t put you off flying, miss,” says Christopher Reeve in the 1978 “Superman” film. “Statistically speaking, of course, it’s still the safest way to travel.” Well, if you’re Lois Lane and the Man of Steel comes to your…
In season five of the FX series “Sons of Anarchy,” main character Jax Teller (Charlie Hunnam) watches his best friend Opie (Ryan Hurst) die in a prison fight. It’s a brutal scene that features some of the show’s defining elements: Shakespearean drama, graphic violence, and…
Two years ago, I had just graduated from college and I found myself filled with uncertainty about my future. As a physically disabled 23-year-old on Social Security with an English degree, even I joked about the likelihood of facing unemployment and being forced into academia for…
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…
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…
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