Columns

A Plea for Singapore to Approve SMA Treatments

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…

SMA Is Full of Contradictions

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…

You Can Become an Honorary SMA Athlete, Too

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…

Crip Wealth and the Tapestry of Pride

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.

Surprise! Your Favorite Character Might Be Disabled

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.