Columns

We Choose to Fight for the People Left Behind

Weeks ago, when my friend Sherry and I started brainstorming topics for Disability Pride and SMA Awareness Month, we talked about choice. Specifically the hypothetical kind. In an ideal world, with free healthcare and radical accessibility, would we choose to stay disabled? It’s a question I’ve asked myself…

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…