Embracing My Inner Alien - a column by Kevin Schaefer

wheelchair malfunction, movie theaterKevin 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.

 

Making SMA Lives Easier, One Echo Dot at a Time

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…

One Year Since I Attempted Stand-up Comedy

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…

My New Role Here at ‘SMA News Today’

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…

The Most-Asked Question when Strangers See Me

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…

New Wheels, New Freedoms

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…

On Being Approved for Spinraza

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…