The ABC sitcom Speechless, which premiered in 2016, has been discussed widely among various disability communities since its debut. Beyond the fact that it is about a family whose eldest son has cerebral palsy and uses a wheelchair, the show is not afraid to tackle subjects…
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…
A few weeks ago, I wrote about how my Echo Show from Amazon Alexa has significantly increased my independence, particularly when I’m at home. Recently, my editors here at SMA News Today contacted me about several Echo Dot devices they had to give away…
The other day Facebook reminded me that a year ago I gave stand-up comedy a shot at an open mic night. My local comedy club does open mic sessions every week, and since I have a few comedian friends who had been encouraging me to try it…
Since April, I’ve been writing this weekly column, and I’ve enjoyed every minute of it. Telling my story here on SMA News Today and sharing my thoughts on a wide range of topics has been liberating, rewarding and it has allowed me to connect with others…
Living with SMA or any kind of visible disability means that numerous awkward conversations inevitably will occur. It’s simply one of the things that happens when you’re in a wheelchair, especially when talking with kids or really, really dumb adults. Yet with all the odd comments and questions…
As summer comes to an end and many colleges and grade schools are already in full swing, I’ve been thinking about how I made it through four and a half years of college as someone with SMA. It was far from easy, but it was still one…
While modern technology is a nice convenience for most people, for people with SMA, it’s one of the most innovative resources we have to live independently. I recently wrote about my new wheelchair and how the features on it help me adapt to my weakening body…
After three denials by my insurance provider, countless phone calls and my amazing neurologist fighting for me, I finally acquired a new wheelchair a few days ago. The process took a year, and while the insurance fiasco was a headache, at least this particular battle is over…
To the average person who only visits in the event of an emergency, it may seem like hospitals have every kind of medical equipment imaginable. Even the run-down ones still have IV tubes, operating tools for major surgeries, vaccines, and a whole lot of mediocre cafeteria food.
Last week I wrote about the different perspectives within the SMA community toward Spinraza treatment, with a brief summary of where I stood on the issue. As it turns out, the day after that column, my family and I found out that Medicaid had approved…
December 23, 2016 was a big day for my family and me. Not only did my sister go into labor with she and her husband’s first child on this day, but it also was the day it was announced that the first FDA-approved treatment for spinal muscular…
As I’m writing this, I’m not working on a laptop, but on my iPhone. To my left is my robotic arm, mounted on the side of my wheelchair, which I’ll use later tonight to eat dinner. Over in the corner sits my chest PT equipment, which I use…
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