Embracing the Power of My Voice
Ever since I was a kid, some of my favorite actors have been those who weren’t always in front of the screen. Given my love of animation and motion capture technology, the way that people like Andy…
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
Reflecting on the disappointing disability representation in ‘Wicked’
Note: This column contains spoilers for the musical “Wicked.” A few weeks ago, I saw the award-winning musical “Wicked” with my sister-in-law. I saw the show back in 2012 with my parents in New York City, and…
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Combating Stomach Issues with SMA
For most of my adult life, I’ve been fortunate to maintain my physical health. Aside from a bout with pneumonia in early 2018 and a broken femur…
Rare and Resilient: My Adventures in Philadelphia
Amid its heart-pounding fight sequences and images of Michael B. Jordan carrying car tires in the middle of the desert, the film “Creed II” offers a poignant representation of…
Let 2020 Be the Year of Disability Representation
I just finished watching “The Ataxian,” a documentary from 2015 about Kyle Bryant, a bicyclist living with Friedreich’s ataxia (FA), a rare disease which shares commonalities with SMA. The film showcases a…
The Humorous Interactions That Stay with Me
A few months ago, my colleague Brianna Albers wrote an excellent column about ableism in interactions with strangers. People pity those with disabilities and say things such as, “I’m so sorry for…
A Robot Named Otto Transformed My Life
Four years ago, I put on my big-boy pants and finally learned how to feed myself. Throughout my high school and college years, I was too lazy to pick up a fork on my own. Instead, I…
The Movies that Made Me: Life Lessons and SMA
During the recent Thanksgiving holiday, I spent a lot of time reading, going to movies, and streaming shows at home. I particularly enjoyed the Netflix documentary series “The Movies That Made Us,”…
My 10-year Challenge: Reflections on a Decade
If you’ve been on social media lately, you’ve probably seen a flood of posts with the hashtag #10yearchallenge. This trend, popular on sites such as Instagram and Facebook, prompts users to post…
My Rare Disease Family Goes Beyond SMA
Just a couple of years ago, I knew little to nothing about cystic fibrosis (CF), a genetic disease that affects approximately 30,000 people in the United States alone. My perspective is wildly different…
The Art of Rejuvenation: Time with Fellow Comic Nerds Inspired Me
My computer screen stared at me as a wave of unread emails and messages flooded my inbox. I work in management, so it’s not uncommon for me to respond to dozens of messages on a typical workday.
My Quality of Life Is as Important as My Physical Health
Recently, I spoke with my friends Jim and Becky Berry on the SMA News Today Podcast. In late 2018, they lost their eldest son Carson, who was a college student…
Taking Stock of the Advances in SMA Treatment and Research
Recently, I attended the 2019 Cure SMA Chapter and Leadership Conference in Boston. There, I connected with friends I had met through previous conferences and listened to presentations from Cure SMA staff…
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