Imagine there’s a Singaporean girl with SMA. She’s exhausted by chronic neuropathy, medication, and feeling like she’s worth less than her able-bodied peers. So exhausted, in fact, she struggles with writing about her disability for SMA Awareness Month. “Google is free. Why should I have to make myself uncomfortable and…
Columns
This month, I’m celebrating SMA Awareness Month the only way I know how: by recognizing that SMA is full of contradictions. Last year, I wrote an entire jeremiad on my ambivalence toward SMA Awareness Month. I didn’t hate it, but I didn’t like it, either. I recognized the benefits…
After an extra year of waiting, the Tokyo Olympics are finally underway! I’m generally not much of a sports fan, but I always look forward to the Olympics. Even for those of us who don’t usually watch sports, at least one event will spark our interest. I…
For as long as I can remember, I have participated in the SMA community in some way. Whether it was opening a lemonade stand as a little girl, participating in a research study, or running a nonprofit organization as an adult, I have always been committed to making…
The Olympic Games in Tokyo are happening right now, which makes me think about how those of us with SMA are athletes in our own special way. How do we win against the opposing team of our symptoms? We must have high amounts of endurance, the will to overcome…
I had Mrs. Ruby Miner for spelling in the seventh grade. Besides spelling words, we defined, pronounced, and wrote them neatly. Stepping into Room 217 usually brought on a slight spell of jitters, even for this decent speller. I can only imagine the palpitations had I not been an attentive…
The problem with disability pride is that it’s a little bit mythical. It’s not something you can describe or explain. It’s an enigma. A paradox. It shouldn’t exist, but it does, and the illogic of it — valuing something the world abhors — makes the concept seem impossible. You…
I can still see the golden afternoon of my first tea party like it was only yesterday. I swung open the wooden cottage gate. In the center of a secret garden surrounded by dense evergreen hedgerows, a buffet table sat beneath the spotlight of the sun, awaiting guests. An elegant…
I never planned on writing about video games for my column. But after three columns about four games by two different studios and counting, I thought it’d be fun to tell the origin story of how gaming became a big part of my life and disability advocacy. So, hit pause…
It’s no surprise that I love seeing myself in my favorite stories. Take “Mass Effect,” for example, a science fiction media franchise by video game developer BioWare. One of my best friends, Sherry, has written several columns about the franchise, which she recently played from beginning to end. Every…
