Columns

Honoring the Siblings in an SMA Family

Because our daughter, Katie, and son-in-law, Paul, live over five hours away, we don’t see them often. Thanks to last year’s lockdown, we hadn’t seen them in 10 months when they pulled off a surprise visit for my birthday last May. That long weekend was stuffed…

SMA Pride and Disability Language

I was wrapping up a week of vacation when I came upon a flood of posts on my Instagram feed about “SMA Pride Month.” Though August is traditionally recognized as SMA Awareness Month, a group of SMA activists and influencers feel it’s important to rebrand the name. By calling…

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…