Last week, I wrote about how living with SMA requires me to be proactive. When I want something or I desire to be more independent, I often have to develop creative solutions to overcome physical limitations and logistical issues. This applies to acquiring caregivers, getting transportation, and…
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…
Over the years, I’ve talked with many SMA individuals and people with other disabilities who crave more independence in their lives. Beyond the physical limitations that come with having a disability, the biggest frustrations have to do with finding resources to become more independent. Society doesn’t exactly make…
When I was a kid, my family used me to bump to the front of the line for the Haunted Mansion ride at Disney World. Despite my kicking and screaming because I was scared of the ghosts and creepy effects on the ride, my parents made me…
I’ve written in the past about my Echo Show from Amazon Alexa, but I wanted to provide further updates on how this device is helping me in my daily life. At the time of writing this, Skynet still hasn’t achieved total world domination, so I’m still OK…
February was a pretty exhausting month for me. I kicked it off with a two-week stint of pneumonia and a weekend in the hospital, then I got straight back to work once I felt better. To top it all off, I ended it with a 24-hour stomach virus…
Having SMA means that strangers approach me on a regular basis. From the onlooker who’s infatuated with my service dog, to the 10,000th person who sees my wheelchair and asks me if I “have a license for that thing,” I’m quite used to comments from people that range…
Alas, after a long couple weeks of constantly spitting phlegm into a cup and spending hours attached to my Vest Airway Clearance System, I’m finally getting over this pneumonia and back to “normal.” Normalcy isn’t exactly something that factors into my life at any point, but I…
It’s been a pretty lousy week for me, to say the least. What started as a ridiculously annoying cough in the middle of the first week of February eventually resulted in a trip to the emergency room the following Saturday. “Please don’t say the P-word, please don’t say…
While spinal muscular atrophy is strictly a physical condition, it can still take a mental and emotional toll on those who have it. Between having to be dependent on others for physical needs, feeling like a burden as a result, and constantly being reminded of the things you…
The upcoming film “Don’t Worry, He Won’t Get Far on Foot” by director Gus Van Sant and starring Joaquin Phoenix is already stirring up controversy in many disabled communities. Depicting the life of the late quadriplegic cartoonist John Callahan, the film is just one of many movies…
I’m often told by friends that I’m a pretty chill, go-with-the-flow kind of guy. In my podcast group, I’m the peacekeeper, if and when a dispute ensues among my co-hosts. When I was on the editorial staff of North Carolina State’s student newspaper, I was the guy who…
Since starting my full-time position here at SMA News Today, I’ve had the opportunity to take part in several multimedia projects. The podcast I do for this site is one of my favorite parts of my job, as I’m always fascinated to talk with other SMA individuals…
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