The Truth About SMA Awareness Month

Not everyone likes it.

A while back, I was talking to a friend in Singapore who also has SMA. She mentioned that although she wanted to post something for SMA Awareness Month, she was struggling to balance her desire to advocate and raise awareness with her desire to, as she put it, live and exist: “The onus shouldn’t be on marginalized folks to educate, especially in the age of the internet.”

I’ve been thinking about this a lot, especially as I gear up to finalize my manuscript and — gulp — query agents. I want to post something on social media for SMA Awareness Month. I feel like, as a visible member of the community, I should. But the truth is that I don’t want to.

Sometimes, most times, I want to write about SMA. I wouldn’t call myself a “disability and mental health advocate” if I wasn’t passionate about it. I wouldn’t write this column, or collaborate with Genentech on SMA My Way, or wax poetic in Instagram captions if I didn’t believe in this work. But right now, my attention is elsewhere.

And I think that’s OK.

Don’t get me wrong: SMA Awareness Month is a great initiative. I couldn’t be more proud of the people who show up day after day with story after story, all to make the world a little more hospitable for folks with SMA. (Have you checked out this year’s 31 Days of SMA yet? Kevin Schaefer is the real deal.) This community would not exist without those people, and I applaud them.

But sometimes I wonder if SMA Awareness Month really offers any value.

For some, SMA Awareness Month is a way of being seen. And that’s great! We all deserve to feel seen. But for some, including me, SMA Awareness Month is a responsibility. A chore. “Oh, I have to post something. I have to open up my social media to questions.” It generates more work for us, a marginalized group, and often results in passive engagement from well-meaning people who forget about SMA on Sept. 1.

Many of the stories I see on social media are stories we’ve already told. We share factoids that are easily accessible. Even if SMA News Today hadn’t compiled this fancy cheat sheet, the information we share throughout the month of August is literally a Google search away. What does SMA stand for? What are the symptoms of SMA? What’s the life expectancy of someone with SMA? Data and statistics and case studies and dictionary definitions that I’ve shared again and again and again, except no one’s really listening, and once August comes around I’m expected to do it all over again.

This isn’t to say that people can’t ask questions. Open curiosity trumps willful ignorance every time. I welcome questions. But what do people do with my answers? What does the internet do with the annual influx of SMA-related content? Does it spawn advocacy and partnership, or a dutiful return to the status quo?

At last year’s Cure SMA conference, my parents were enjoying Disneyland alongside the hundreds of other families in purple-and-gold T-shirts. Someone stopped them and asked, “I’ve been seeing those shirts around. What does that mean, ‘Cure SMA’?”

Let’s ignore, for the moment, the fact that every shirt has the Cure SMA website printed on the back. Odds are the lady had a cellphone with internet access and a uber-powerful search engine. All she had to do was take a load off in the shade and Google “cure sma.” That’s it. She didn’t need a JSTOR subscription or a library card. She didn’t need to comb research articles for reliable information. She just needed to utilize the resources that were already available to her. Instead, she stopped my parents on our vacation, with the implicit expectation that they would educate her.

I find it easy to draw parallels between that lady and SMA Awareness Month — both well-meaning, and both missing the mark.

What do you, reader, do with the weight of your life experiences? Do you vote in favor of marriage equality for people with disabilities? Do you work to abolish the subminimum wage? Do you see our advocacy as a springboard, and invest your own time and energy in learning about inaccessibility and the disproportionate impact of natural disasters and police brutality on folks with disabilities?

As SMA Awareness Month draws to a close, let’s commit to turning awareness to advocacy, and advocacy to partnership.

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Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.