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 numerous…
Columns
Ed. note: This column was written in collaboration with fellow columnist Alyssa Silva for SMA Awareness Month. Read about her experiences with multigenerational living and how the two stories intersect at “Life, One Cup at a Time.” “But don’t you want to live on your own someday?” That’s a…
Ed. note: This column was written in collaboration with fellow columnist Halsey Blocher for SMA Awareness Month. Read about her experiences with multigenerational living and how the two stories intersect at ”From Where I Sit.” It was another Friday night at the beach this summer, and I…
To no avail, I called out his name to grab his attention. He couldn’t hear me, and I pondered how to boost the synergy between us. The little wolf nuzzled blades of lush green grass, swayed by the morning breeze. As he sniffed closer and closer to the tall grasses…
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 with good…
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 it…
I want to see myself on the big screen. Or, more accurately, I want to see my people on the big screen — folks with stubborn bodies and obstinate minds. I want to build a world in which disabled people are no longer relegated to the role of two-bit…
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…
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…
