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…
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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…
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…
