I looked at the faces on my computer screen and saw just a snippet of the SMA community. People from different locations, different cultural backgrounds, and with different types of SMA were gathered for a Cure SMA virtual book club, which I had…
Well, 2021 has arrived, but we are still dealing with the ongoing ramifications of the previous catastrophe of a year. Those of us in disability communities remain in physical isolation, along with many others across the globe. Time goes on, but in many ways, it feels like it’s…
The pursuit of independence is almost always on my mind. As a disabled person, I face numerous challenges when it comes to living an independent lifestyle. From financial obstacles to managing caregivers, the very thought of one day moving out of my parents’ house fills me with more…
I didn’t plan on spending the majority of the day after Christmas on the toilet with a sharp pain in my side, but it was a rather fitting end to 2020. Despite my best efforts, I couldn’t escape this year without at least one visit to the ER. …
Christmas Eve marks four years since I became an uncle, or as I like to call myself, a “funcle.” I let my sister and brother-in-law attend to all of the important parental responsibilities, while I do things like watch Disney movies and play hide-and-seek with my niece and…
The ABC sitcom “Boy Meets World” was a staple of my childhood. My sister and I spent many afternoons watching the hilarious and often idiosyncratic adventures of Cory, Shawn, and Topanga play out. Cory was the loyal and good-natured protagonist who had a…
In his essay for The New Yorker, “Who Am I?”, comedian Demetri Martin explores his identity both literally and figuratively. He opens by saying that he is “not a thing that is just lying around somewhere, like a pen,…
If 2020 were a movie, it would have the aesthetic of David Lynch and the shocking twists and horrors of a Stephen King novel, and it would run the length of an unedited Peter Jackson epic. Viewers would yearn for a filmmaker like Wes Anderson to sweep in…
Certain days can only be described as “an SMA kind of day.” It happens when the power cuts off in the middle of the night, causing the BiPAP machine to stop working and the hospital bed to sink. Or, when…
Do you sleep in your wheelchair? This is a question I used to get all the time in middle school. I always thought it funny that some of my peers genuinely thought that I remained in my chair around the clock,…
