SMA in fiction: The First Thing About You

December 4, 2022

I’ve never read a novel in which the main character was someone with SMA. As a person with SMA, I’ve always wanted to, though. The First Thing About You is the debut novel by Chaz Hayden. It’s not my usual genre, being a YA rom-com, but I enjoyed the departure from fantasy and sci-fi and honestly I’ll read about a character with SMA in any genre.^[1]

This isn’t so much a review as it is me capturing my thoughts while they are fresh. There will be some spoilers, but I will warn you. But, really, you should read it if you’d like a fun, cute rom-com about quirky kids trying to figure out themselves while dealing with some tough real life stuff. The disability insight is a bonus.

Disability logistics

I’m a hobbyist writer of fiction with little to no ambition of publishing. I enjoy the creative challenge of National Novel Writing Month and I get satisfaction from making my brother read whatever mess I end up with at the end of the month.

I’ve tried to write about a character with SMA but I found it difficult for the same reasons having SMA is difficult—it’s hard to make a character do stuff when they can’t do stuff. Many people with SMA need help with everything. That means your character needs help to do just about anything. My FBI analyst with SMA was really struggling.

I was curious how Chaz would handle this and I must say he pulled if off well. In fact this assistance is central to the story—as it is central in our lives. The assistance that Harris, the main character, receives from various people—his family, school friends, his nurse, and his love interest—is the story. It’s how those relationships function that makes the story happen.

SMA accuracy

I wasn’t sure going in how realistic the character’s disability was going to be, partially because of the logistics concern I just described. SMA feels like something of a spectrum so the severity of muscle weakness can vary, sometimes wildly, case-by-case.^[2] I would have been happy with any level of SMA severity but I was especially happy to see that it was something close to my own. The struggles Harris works through were that much more relatable to me.

Chaz didn’t cut corners. We got showers, bathroom problems, respiratory issues—hello cough assist, old friend—and many more. This stuff is part of having SMA and I was happy to see it in the story as part of the plot.

The family relationships

All I can say here is… accurate. I saw more than a few similarities between Harris’ mother and my own legendary mom.

The PCA relationship (spoilers)

A character named Miranda becomes Harris’ nurse (or what I would call a personal care assistant or PCA). She helps Harris come out of his shell and navigate new people in a new town. The nurse who helps the disabled individual grow as a person is something of a trope in disability stories but this one had redeeming qualities that I enjoyed.

First off, it’s a two-way thing. At first Miranda is the cool 20-something who treats Harris like a person and pushes him like an outgoing friend would a quiet one. But as the story continues, we see that Miranda gets a lot in return from Harris, who helps her work through some of her own problems.

It might be cliché but in my experience it can be like this sometimes. If you spend many hours a day with someone through some of your most intimate daily activities it’s easy to become close friends eventually. And if things go well, in any friendship, both people should get something out of it.^[3]

SPOILER: I would’ve liked to see Miranda’s arc end a little differently because, in the end, I think Harris was a bit too hard on her. Minor gripe.

The friend relationship

Harris had one main friend in school in the story (aside from the love interest). This isn’t to say everyone with SMA will have the same experience, but I definitely had a few quality friends rather than a quantity of them. Disability may or may not have anything to do with that—it really depends on your personality—but this was another relatable thing for me.

The love interest relationship (spoilers)

I enjoyed this arc. I felt like it had just the right mix of regular relationship stuff and some of the disability logistics I mentioned earlier (i.e., I know we are on a date but, surprise, you have to feed me! 😬😅). Nory, the love interest, had an interesting backstory that made Harris more relatable to her and made their connection feel more real, whereas it would have been easy for the love story arc to feel totally contrived in a novel like this.

I haven’t found my own Nory Fischer yet, ^[4] but many people with disabilities have and I appreciate this representation of dating with a disability. It’s the same as with anyone else, and also different. And both sides of that coin are present here, and really make the story for me.

SMA in fiction

Spinal muscular atrophy is a very specific and rare disability and it’s not like I expect to see it everywhere. But it was nice to have a deep dive into the mind of another person with SMA. I can tell that many of Harris’ experiences were pulled from real life (in a good way!) and after two days of reading I feel like I have known Chaz Hayden forever. I probably have an incredible bias when it comes to this novel so I am interested in what readers without SMA think. If anyone knows of good reviews, especially non-formal, bloggy ones, send them my way.