31 Days of SMA: I Write to Offer a Unique Perspective

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Photo courtesy of Chaz Hayden

Day 4 of 31

This is Chaz Hayden’s (@thechazhayden) story:

Hey, friends! My name is Chaz, I’m 25 years old, and I have SMA type 1. I’m a soon-to-be-published author with my debut novel, The First Thing About You, releasing in fall 2022.

The main character of my book has SMA, and much like me (and every other person with SMA), there’s so much more to him than just his disability and I made sure that was obvious throughout the story. Unfortunately, this isn’t always the case in popular media, such as movies or TV shows, where we often see the disability at the center of every plot point and story arc. The reason for this is because these stories are seldom written from the perspective of an actual person with a disability.

When I set out to write my novel, I knew I wanted to share the voice of a demographic that is rarely heard but I also wanted the everyday reader (somebody without a disability) to understand my character and empathize with his problems as a human being first. What I mean is that a young person with SMA is the same as a young person without SMA. We both have passions and want to experience friendship and love and everything else that comes with being a teenager. That needed to be at the forefront of the story.

But, I’ll admit, balancing the human side of the story and the disability side is a difficult task. To help, I ask myself: If I remove the disability from the character, does the story change? Surprisingly, the answer to that question should be yes because then it means I’m offering a unique perspective of life that wouldn’t otherwise be there. However, although I may be highlighting the experiences of living with a disability, I don’t allow the disability to drive the story or solely identify the character.

It’s not always easy to accomplish and that’s why we need more writers with disabilities to share their stories and filmmakers to not only include people with disabilities behind the scenes but also cast disabled actors for the best possible representation. In my opinion, I’d rather not be represented than be shown disingenuously.

SMA News Today’s 31 Days of SMA campaign will publish one story per day for SMA Awareness Month in August. Follow us on Facebook and Instagram for more stories like this, using the hashtag #31DaysofSMA, or read the full series.