Identity, SMA, and Thinking Outside the Box

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by Kevin Schaefer |

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In his essay for The New Yorker, “Who Am I?”, comedian Demetri Martin explores his identity both literally and figuratively. He opens by saying that he is “not a thing that is just lying around somewhere, like a pen, or a toaster, or a housewife.” Rather, he is an actual human being who can use objects like pens and toasters, and he can chat with a housewife.

Martin goes on to explore identity in the context of time. Depending on the time and place, he might be referred to as “Hey, You!” or “Get Out of the Way!” Reflecting on his college days, he writes, “I was Pledge and then Disappointed and then Transfer Student. I am still amazed at how picky certain so-called ‘brotherly’ organizations can be.” 

“Who Am I?” is one of my favorite essays, in part because of Martin’s comedic wit, and also because it offers a poignant analysis of what makes a person a person. In our culture, we like to use one or two descriptions to encapsulate a person’s identity. Typically, we associate a person with their occupation, thus ignoring all the other elements that make them who they are. 

In my life, most people outside of work don’t know my formal job title. They might know me as a friend, an extrovert, a “Star Wars” enthusiast, a writer, a guy with SMA who does cool stuff with his robotic arm, or something else. Most people know that I like peanut butter on my bagels and sandwiches, and some people know that I loathe kettle corn. 

To me, these are all interesting facets of my identity. I take great pride in my work, but I also don’t want people to immediately think “Forums Director and Columnist for BioNews” when they see me. If we didn’t introduce ourselves based on our LinkedIn profiles, I wonder what we’d say about our identities.

This principle also applies to having SMA. When I write about SMA, I don’t emphasize the medical terminology that you’d find in scientific journals. Those things are important, but I prefer to focus on the ways in which SMA affects me personally. 

There was a time in my life when I dismissed this notion altogether. For a good portion of my childhood and teenage years, I refused to recognize SMA as an intrinsic part of my identity. In my longing to obtain some status of “normalcy,” I ignored that which made me unique. 

Obviously, that is not the case anymore. My attitude and mindset have evolved over time, and I am now embracing my inner alien. Yet, this transformation didn’t occur overnight. In reality, I’m still on a journey of continual discovery, both about myself and the world around me. 

The filmmaker Taika Waititi delivered a TED Talk years ago, titled “The Art of Creativity.” In it, he describes creativity as a culmination of ideas and expressions, and not a singular thing that you can wrap inside a box. Likewise, identity isn’t something you can narrow down into a neat caption. Identity is an amalgamation of viewpoints and personality traits and relationships, and it can change over time. 

We are a lot more than what we simply do for a living. We are people, infused with different needs, passions, and food preferences. Speaking of, don’t Tweet at me if you like kettle corn.

Thank you all for coming to my TED Talk. 


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.

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