Judy Heumann’s legacy must not be forgotten
“A hero — not the hero we deserved, but the hero we needed.” This line from a Batman movie aptly describes the life and legacy of Judy Heumann. The prominent disability rights activist, who died March…
Embracing My Inner Alien
— Kevin Schaefer
Kevin is a writer, podcaster, and lover of all things pop-culture. Diagnosed with SMA Type 2 at the age of 18 months, he shares a vast array of hilarious and eye-opening stories from his life with a neuromuscular disability. In addition to his weekly columns, he works as the Director of Forums for this site’s parent company, BioNews. 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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How a long-distance adventure helped me handle losses from SMA
Traveling to a concert three and a half hours away requires planning, which is all the more true when my disability enters the equation. Between securing transportation, finding an accessible hotel room, and making sure the venue is…
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My perspective on disability and loss as someone who was ‘born this way’
The HBO series “The Last of Us” takes place in a dystopian world where zombie-like creatures roam the Earth 20 years after a mass infection wreaked havoc on humanity. Its main characters, Joel (Pedro Pascal) and Ellie…
Sleeping problems are another part of the SMA package
The 2021 Netflix movie “Awake” imagines a world in which a mysterious catastrophe wipes out all electronics and takes away humanity’s ability to sleep. Mass hysteria ensues within hours of this apocalyptic event, as people long to…
Teacup Rides and Wheelchair-spinning, Oh My!
When I was younger, I enjoyed the hyperactive nature of the teacup ride at Disney World. My mom hated it, but my dad was willing to accompany my siblings and me on this headache-inducing extravaganza. Spinning around inside a…
Striking a Balance in 2023 Between SMA, Well-being, and Productivity
A few years ago, I started listening to comedian Chris Gethard’s podcast, “Beautiful Stories From Anonymous People.” The premise of the show is that people call in, and whoever gets through talks with Gethard about any subject…
What if I Could Take a Vacation From SMA?
“Yesterday, All my troubles seemed so far away, Now it looks as though they’re here to stay, Oh, I believe in yesterday.” Among the countless hits by the Beatles, “Yesterday,” released in 1965, has stood the test of time…
According to Spotify Wrapped, I’m Allergic to Silence
I listened to 78,978 minutes of music and podcasts in 2022. Thanks to the popular feature Spotify Wrapped, I and millions of users can look at a summary of our listening habits each year, for better or…
How SMA Has Affected My Perspective on Aging
“Your 60s you’ll have a major surgery, the music is still loud but it doesn’t matter because you can’t hear it anyway. Seventies, you and the wife retire to Fort Lauderdale, you start eating dinner at 2 o’clock in…
SMA Episode V: The Pneumonia Strikes Back
“Pneumonia! It’s been a few years. How’ve you been? Sorry to be blunt, but I’d rather you not stick around for too long since you’re a real pain in the butt.” Fortunately, my most recent encounter with my old…
Spending Time Alone Is Part of Living With SMA
The other day, I had my annual evaluation with a nurse to make sure I’m still disabled. This is one of the things that those of us who use government services for caregivers just have to do. It’s no…
Life Lessons From Dad About Finding Joy Amid Uncertainty
On the last day of this year’s Cure SMA conference, I sat on a panel called “It’s a Wonderful Life” with other adults in the community. The cheeky title is meant to reflect the notion that adults with…
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