A couple of months ago, a woman stopped me in the hallway of the clinic I go to for physical therapy. She overheard me talking with one of my physicians about my Spinraza (nusinersen) treatments, and she asked me to speak with her two teenage sons who…
Embracing My Inner Alien - a column by Kevin Schaefer
If someone had told me a few years ago that I would love going to physical therapy every week, I would have laughed. Let’s just say that the idea of letting other people stretch my arms and legs, contort my muscles into uncomfortable positions, and make me do…
They say it takes a village to raise a child. If that’s true, then it takes an army to care for someone who has SMA. Though most of us tend to have one or two primary caregivers, the reality is that we depend on countless people every day…
When it came time to plan for my brother’s bachelor weekend festivities, I was adamant about participating as much as possible. Events like this aren’t always inclusive for people with disabilities, but the two guys who planned this weekend wanted to make it accessible for me. I knew…
On Tuesday, April 2, I embarked on a noble quest. At one point, I thought I would need to summon the power of all six infinity stones to accomplish my goal. My mission was to obtain two tickets for the opening night of…
Between frequent migraines, sleep deprivation, losing significant strength in my arm and upper body, and the universal growing pains of being a teenager, my high school experience came with plenty of challenges. There was also that time I mustered the courage to ask a girl…
A few weeks ago, reality television host Dr. Phil sparked a major controversy with his statements about interabled relationships. Much like Ken Jennings’s infamous 2014 tweet, a single statement from America’s favorite psychologist led to a social media movement for people with disabilities.
From the time I was in kindergarten to when I graduated high school, I had a full-time aide accompany me to all of my classes. This person helped me with my books, took notes for me, set up my lunch, and kept me in line so…
A few days ago, I was talking with my friend Young, a fellow journalist and comic book enthusiast who now writes a column for Charcot-Marie-Tooth News. Ever since we started having conversations about our disabilities, and since I lured him…
I write a lot about defying the odds and being adventurous despite my disability. I’m not keen on being called an inspiration by people who don’t even know me, but nevertheless, I want to subvert the stereotype that every person in a wheelchair just sits…
