An upward view of a man's shoulders and head as he uses an eye tracker bar to type, letters he is typing surround him

About You: An Author and a Character with SMA

Note: This year's theme for SMA Month was SMA does not define us. For Chaz Hayden, a patient leader for SpinalMuscularAtrophy.net, his life as a writer is one way he defines himself. We asked him some questions about his first book The First Thing About You, a Young Adult novel being published in September 2022, in which his main character, a teenager named Harris, doesn't let his SMA define him, either. He does, however, define others by their favorite color.

Introducing readers to SMA

Q-Woven throughout The First Thing About You is a pretty thorough introduction to the challenges of life with SMA. Was this the impetus for the story or was the high school romance plot the lead for your creative development?

To me, it was never one or the other. I knew I wanted to write a very classic rom-com and I wanted the main character to be disabled. Because of that, the reader is going to hopefully understand SMA because the dynamics of Harris’s disability are a part of both sides. When he goes on the date with Nory, he’s feeling normal anxiety of a first date regardless of his disability and the excitement of being out with his crush. And at the same time, he struggles with the fact that he’ll need Nory to feed him their lunch. How does he ask or approach that topic? There was no way around his disability or the fears that come with being a teen boy because Harris is both of those things and therefore is the plot.

SMA and the novel's characters

Q-How does The First Thing About You differ from other works of fiction that include disabled characters? How did your personal experience with SMA allow you to portray Harris beyond the stereotypes, as a deeply complex teenage boy?

A lot of stories that include disabled people, whether in film or literature, are often written by someone who isn’t disabled. Because of that, stereotypes inherently occur because it’s not that person’s life. Disability is mostly portrayed as a tragedy or someone that needs to be saved since that’s unfortunately how we’re perceived by society. If I wrote my truth, my experiences, which I did, then I knew I’d be proud of the story and characters that I’d create. SMA is so different for each person that I’m sure not everyone will 100% agree with everything that happens. I’m fine with that because I hope that they’ll still relate to Harris’s overarching struggle of self-identity which I know is something we all face.

Q-As in all coming-of-age stories, the characters grow from beginning to end. What did you set out to have Harris learn? What about secondary charactersMiranda and Nory? What’s next in Harris’s life (unless there’s a sequel…then I have to wait).

There’s no sequel, at least not one I have planned. Because of that, I’m curious to see where readers think Harris goes after the last page. Is he with Nory? Will he ever see Miranda again? It’s all very open-ended which was made possible because we see evolution and change from each character, especially Harris. He’s definitely more confident and less worried about what other people think of him or who he should be and how he fits in. For the first time, Harris is comfortable and that opens a lot of possibilities but I’ll leave that up to your imagination and everyone else’s.

Q-Harris has a relatable sense of humor, especially in his internal monologues. However, he and secondary characters have self-esteem issues. For all his bravado, is he too self-depreciating for his own good? Was this a theme you set out to feature?

Self-depreciating humor is the only way I know how to deal with SMA. I’ve learned you have to laugh at yourself and the things you go through or else it’s a lot more difficult to come out the other side. The rumors about Harris’s disability were just a way to show that at that point of the story and his character arc, he’s willing to go with whatever happens as long as it makes him appear more interesting. But Harris doesn’t start the initial lie which was told by Miranda.

The reader, along with Harris, really doesn’t understand why she lies for him, but Harris is already so head-over-heals and trusting of Miranda that it doesn’t matter. On top of that, Harris convinces himself that those rumors of his disability make no difference to him even as they become more farfetched. People already see his wheelchair; they know he’s disabled. Does the reason why have any relevance? That answer to that probably is yes but, in that moment, Harris just enjoys the attention to a certain extent.

The writing process and SMA

Q-And how long did Harris and the other characters live in your head before you officially started writing?

Right before I started writing The First Thing About You, I was in the early stages of drafting a different novel that I wasn’t feeling very confident about. An event happened in my life that sparked me to pivot and share Harris’s story so the idea wasn’t in my head very long before I started but I feel like I’ve known these characters for my entire life. Writing this book was almost like therapy for me but also living vicariously through Harris and his relationships. He is so much braver than me.

Q-Which was easiest (or most fun) for you, the character development, the plot, or the dialog?
Honestly, all of it was fun and challenging to make sure I was telling something that felt authentic. But dialog is my favorite thing to write. I feel really great dialog is the only way to accurately develop and portray characters and a vessel to drive the story. Each character should sound different from one another and sound like the person you are trying to craft. I will stop reading a book if the dialog falls flat or feels disingenuous to the character.

Q-Writing and revising a book-length manuscript is a physical challenge for any writer. Did your own SMA impact your writing process? Did you use voice recognition software or another adaptive tool?

I actually use an eye tracker to help me type. I put a video on my YouTube channel that demonstrates the eye tracker which took some time getting used to but is now my independence to be creative. I’ve tried voice recognition but I wasn’t a fan. The words inside your head sound different when spoken as you tend to add words and create run-on sentences. I wanted to get as close to typing as possible and using my eyes gives me that feeling and I’m pretty fast. It took me about seven months to write and edit the first manuscript.

The process of getting fiction published is actually very long. Once I finished the first draft I had to query and literary agent and hope they enjoy the book and want to represent me. Thankfully I signed with my dream agent quickly and then we spent another six months revising the manuscript together until we felt it was polished enough to submit to publishers. After choosing a publisher, I then spent another year revising with my editor and then the final manuscript has to be turned in a year before scheduled publication.

When the book is finally published in September, it’ll be over three years since when I first started writing it.

Q-What advice do you have for other people who are disabled and wish to try writing, either to write a book or just for a creative outlet?

You just have to go for it. With anything creative, it’s best to start smaller or do it without the pressure that it has to be published or shared publicly. Create for yourself first and you’ll feel a lot more confident. When I first started writing I focused on poems and short stories, things to hone my skills. I went to writing groups and got feedback and kept working because I quickly felt that creating stories was my purpose.

I know people with disabilities have a lot of other obstacles like finding the energy to be creative or finding a ride to a writing group, for example. Thankfully, a lot of those are virtual now. And I also face stamina and energy challenges but I found technology that reduces that and makes writing easier for me. But it also depends on what you want out of your creative pursuit.

I know I want this to be my career and I’m passionate about being successful, even if that means pushing my body more than I probably should but I love every minute because it’s the only time I feel like myself.

Q-Did you accomplish your thematic goals in writing the book? How did it feel to get your first novel accepted for publication?

I think every author will constantly find things they wished they would have done differently. But at some point, I just had to let go mostly because of publication deadlines but also accepting the fact that nothing is perfect. I think my favorite part of the book is that there are minor imperfections in my eyes but Harris isn’t a perfect character and all those things that I maybe would’ve changed just make the book more human. And they help me learn as a writer and improve future projects. But I am really proud of every aspect and character in The First Thing About You. I know I shared my truth as a writer and storyteller and couldn’t be happier for this story to be my debut. The entire publication process has been a whirlwind but the best part is I’m surrounded by a team who truly understand this story.

What’s next?

I don’t plan on stopping my writing anytime soon. Currently, I’m in the process of revising my second novel. I can’t wait to share that story but in the meantime I’m excited to introduce Harris, Miranda, Nory, and Zander to the world and hopefully get out and discuss the book with readers.

Other than SMA, what defines you?

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