Okay ... deep breath. This book was gifted to my mom by my aunt (her sister) a few years after my own diagnosis of Tourettes in the late 1990s. My mom is not really a reader, so she passed it on to me, and subsequently I read it when I was maybe 15 or 16. At the time I remember really liking it, and even shared it with a well-liked teacher and a few friends, who also read it. I've kept it all these years intending to read it again. But reading it now, twenty years later, is a different experience.
I've lived with Tourettes nearly all my life; it was with me as a child and all of my adult life, so you'd think I'd appreciate the representation in this book a little more ... but I don't. This book is no different from every other sensational TV show, movie, news feature, documentary, or other type of media whose (true or fictional) depictions of Tourettes are now "common-knowledge" examples of what people think this disorder is (remember "Tourette's Guy" of YouTube fame, Maury Povich specials, Deuce Bigalow: Male Gigalo , The Wedding Singer, and that feel-good Hallmark movie In Front of the Class).
The author states that she consulted the then-Tourette Syndrome Association for information on the disorder; and firstly, I'll just say bluntly that I feel the Association has always had a very repetitive, droning approach to TS awareness and education. I myself learned about my new disorder from their stale educational materials and then continued using them for years to inform others. I know the points they highlight most, and the message they intend to drive home for their audience; and it is always the same. The facts never change, and the tone is always a bit condescending, especially toward those with the dreaded tics of coprolalia and copropraxia (inappropriate vocal and motor tics), who are and always have been "othered" even within the TS community, which desires to exclude us as outliers of an already misunderstood and misrepresented neurodevelopmental condition. And it is because of my firsthand experience with these tired old tactics and stigmas that I felt like Rubio simply sat down for an hour-long presentation from the Association on the basics of Tourettes, and then stood and declared "Welp, that's good enough for me!" and off she went to write Icy Sparks.
Rubio's approach to the disorder in the character of Icy panders to the common stereotypical version of Tourettes that existed at the time of writing, both socially and academically. Granted, not much has ever been known about TS, and research is always ongoing, but slow. Nevertheless, this story is just a cookie-cutter telling of the experience of Tourettes from the perspective of someone who obviously doesn't live with it or love someone who does. It's like knowing about cancer, hearing about cancer indirectly, and then writing a book about battling cancer, touching on typical subjects like hair loss and chemotherapy sickness, but with no real understanding of the lived experience of fighting the disease. It just feels very over-indulgent in the most patronizing way.
The classic trouble with teachers (which still exists today), the cliche writing and erasing of homework pages, the substituting of small tics for bigger urges, and the fact that doing something she loves and is good at (singing) causes her tics to take a backseat -- all of these things are just supercilious staples of what the world thinks about Tourettes, and the now-Tourette Association of America contributes in some ways (I think) to the very misunderstanding they seek to correct by not disseminating anything beyond these same, dry, beat-to-death facts and attributes over the last several decades.
As a teen reading this, I probably felt very seen and understood to recognize all the symptoms and characteristics of TS from a textbook point of view; but as an adult reading it, with 25 years experience living with Tourettes, it lacked any real feeling of what tics truly feel like, and how they impact our lives beyond just the challenges we hear about the most. It felt like the author started with a desire to write about Tourettes and uncertainly built the story around that foundation, rather than giving Icy any real character depth beyond her disorder. Her growth within the pages seems manufactured and not organic--as if Rubio knew her TS readers really needed a happy ending for Icy in order to feel good about their own experiences living with tics.
The down-home country imagery are what will stand out most in my mind after reading this book twice now. Icy's rural, 1950s Appalachian home actually comes to life superbly, and I loved that the most.