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.

 

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 Serkis, James Earl Jones, and the late Robin Williams created so…

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 the previous year, I’ve experienced an overwhelmingly positive health streak since…

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 3,000-mile bike race across the United States completed by Bryant and…

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 this horrible thing you have to live with.” I’ve…

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 just played the disability card and relied on the sympathies of…

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,” which tells the original stories of classic films like “…

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 a picture of themselves from 2009 next to one from 2019.

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 now that I have friends and co-workers with CF. I’ve learned…