SMA Pride and Disability Language
I was wrapping up a week of vacation when I came upon a flood of posts on my Instagram feed about “SMA Pride Month.” Though August is traditionally recognized as SMA Awareness Month, a…
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.
Featured Post
Seeing myself in the world of the ‘Wicked’ film
When the movie version of “Wicked” hit theaters last fall and skyrocketed to critical and commercial success, musical theater enthusiasts everywhere felt validation. The blockbuster adaptation of the hit musical struck a chord with…
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Making Churches More Accessible
“LET ME KNOW IF YOU NEED ANYTHING!” An usher exclaimed these words at the top of his lungs in the church auditorium while putting his hand on my shoulder. To say this experience was…
The Cure SMA Conference Reminded Me of the Strength in Community
This year marked the second entirely virtual annual Cure SMA conference. Instead of armies of wheelchair users invading Disneyland and hotels, we fellowshipped through virtual trivia nights…
Embracing the Outdoors and Venturing Into the Unknown
“It’s a dangerous business, Frodo, going out of your door. … You step into the Road, and if you don’t keep your feet, there is no knowing where you might be swept off to.”…
Staying on Top of Everything, or Just Getting By
One of my favorite films is “Rushmore,” a coming-of-age comedy from one of cinema’s most imaginative directors, Wes Anderson. “Rushmore” tells the story of…
Help, My Caregiver’s Car Caught on Fire!
My life is a sitcom. Recently, I was chatting with my friend Young, a columnist for Charcot-Marie-Tooth News, about our writing processes. He was rather…
Like the Legendary Peter Jackson, I Stay True to Myself
Peter Jackson, the New Zealand filmmaker who spearheaded “The Lord of the Rings” trilogy and the 2005 remake of “King Kong,” is…
Managing Chaos Lesson No. 4,491: A Friday Night Wheelchair Malfunction
My dad and I both heard the perfunctory snap as the right armrest on my power wheelchair lowered. I was about to get ready for bed on a Friday night, and my…
Thanks to the COVID-19 Vaccine, I’m Back Where I Belong
“Chewie, we’re home.” Just as Han Solo uttered these words when he stepped aboard the Millennium Falcon in “The Force Awakens,” I felt a similar…
‘I’m Not Broken’: Examining How Disability Is Portrayed in ‘Zack Snyder’s Justice League’
On March 18, the gargantuan blockbuster of a superhero movie known as “Zack Snyder’s Justice League” arrived on HBO Max. With its multiple storylines, ensemble of main…
Amid the Busyness of Life With SMA, I’m Learning to Embrace Stillness
In college, my sanctuary was the room where the majority of my classes took place. Tucked away in a secluded corner of the humanities building, the film room was akin to a…
This Rare Disease Day, I’m Grateful for My Friends
You know it’s a unique relationship when one friend helps the other use the bathroom. This is the scenario I found myself in a couple weeks ago when my longtime friend Lucas…
