SMA creators can talk about more than living with a disability

The 2023 film “American Fiction” follows a frustrated writer named Thelonious “Monk” Ellison (portrayed by Jeffrey Wright). While his books receive critical praise, his lack of commercial success stems from his resistance to writing more popular literature.

When Ellison visits a bookstore, he groans when he finds his books categorized as African American fiction. Though he is a Black author, his novels have nothing to do with the experiences of African Americans. An academic, he writes modern reimaginings of stories from ancient mythology. Eager to strike back at the publishing industry and the way it labels creators and embraces stereotypes, Ellison publishes an absurd satirical novel under a pseudonym.

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March 19, 2019 Columns by Kevin Schaefer

SMA Is Part of My Identity, But It Doesn’t Define Me

We’re more than a singular label

As an SMA creator who works in the rare disease space, I write and talk openly about living with SMA. My disability is an intrinsic part of my identity, and I love that more creators and storytellers today articulate their disability narratives. I come across new Disabled creators almost every week on my social media feeds and on various websites.

At the same time, I don’t think we should have to focus exclusively on SMA and disability. Disabled artists and creators have a diverse range of interests, backgrounds, and areas of expertise. Too often, the modern online practice of “social media branding” boxes us into a narrower categorization.

Maybe I sound like a grumpy curmudgeon, but branding strips away a lot of personalization. It’s an artificial way of condensing someone into a specific thing that they’re known for to appeal to a consumer base. This concept doesn’t encourage people to embrace the whole of their identities. While it’s more convenient from the lens of a social media algorithm, Disabled people and creators are not algorithms.

Back in June, I moderated a panel at the Cure SMA conference called “Storytellers with SMA.” The idea was to have a conversation with writers, filmmakers, musicians, and other storytellers in the SMA community. As we discussed representation and our artistic journeys, one commonality we all shared is that we had each produced at least one piece of work that didn’t revolve around disability. While SMA informs almost everything we do, we are still attracted to different subjects and types of stories.

I write this column and work full time for this site’s parent company, but I have many creative endeavors outside of my main occupation. If I only wrote about SMA and focused exclusively on my work with disability communities, I would drain myself. Though I love what I do and I’m grateful for the numerous connections I’ve made over the years, I also have to tend to other parts of my life and invest in my other passions.

My life outside of my job is fulfilling. I co-host a geek culture podcast, write fiction and scripts, and post sporadically on my Substack newsletter. I go to movie theaters, bookstores, comedy clubs, and live theater venues, and I’m a member of a progressive church community. My identity isn’t defined by one singular trait, but rather a culmination of things that make me who I am.

For other Disabled creators, tell your stories. Show the world who you are as someone with SMA. Know too that the neuromuscular condition that binds us together isn’t the only thing that defines us. We are more than a singular label.

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, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.