Reflections on the representation of disability in “Unwind” by Neal Shusterman

Last year, my grandmother told me excitedly about the book her high school students received for summer reading. After reading only a few chapters of “Relaxby Neal Shusterman, she was clearly hooked and insisted that I read it.

I didn’t need much convincing – futuristic sci-fi novels for young adults are my favorite, and this one had a plot unlike anything I’d ever read.

To give you a quick summary, the story is about three teenagers who are handed over to the government by their legal guardians so that their whole bodies can be removed and transplanted into people who need or want new body parts. Readers follow the unlikely trio on their quest to escape and evade capture until they reach the age of 18, the age when they can no longer be legally “unrolled”.

(Spoiler alert: From now on, I’ll be discussing the plot in more detail, so if you want to read “Unwind,” mark this column for later.)

recommended reading

I was so intrigued by the plot of the book that I suggested it for book club here at BioNews, the publisher of this site. This turned out to be an even better suggestion than I expected because the book contained a surprising amount of disability representation, and we are a company made up largely of people with disabilities and caregivers of people with disabilities.

A character had received a lung transplant due to pulmonary fibrosis (PF), a disease I learned about while working alongside our PF Columnists. Mentioning the disease in a popular book was a huge win for the FP and rare disease communities.

The disabled character who particularly appealed to me was Risa Ward. Near the end of the book, Risa is paralyzed by an explosion, but I loved her long before that. She’s strong, smart, stubborn and creative, and when she continued to embody those qualities – which are part of my own personality – after her injury, I loved her even more. With her wheelchair, she looked more like me than ever.

By the last chapter, I was thrilled to have found a book that portrayed a main character as a strong, disabled woman like me. But just before reaching the end, a line shook me from my pleasure.

To paraphrase, when a newcomer to the sanctuary for “Unwinds” on the run first saw Risa playing her piano, he was struck by how happily she played despite her wheelchair.

Despite.

Despite the wheeled contraption that kept her imprisoned in its evil grip.

Despite the disability that should leave no room for joy in his life.

Of course, the book didn’t say all that, but that’s how I interpreted it. And I was crushed. For a moment, I was tempted to waste my limited energy and strength closing the book in anger and frustration. Instead, I let the moment pass, and my swirling emotions settled into confusion and disappointment.

Why did it have to be despite?

Without even knowing it, I desperately wanted Risa to be strong and cheerful with his wheelchair. Because that’s how I saw her, and that’s how I see myself. That’s how I hope the world sees me too.

I have invested so much time and energy in dismantling society’s misperceptions about disability. Wheelchairs are not a burden and a disability does not have to be a tragedy.

Like my trachea, my cough aid and other medical devices, my wheelchair is a tool that allows me to live a full and abundant life. It doesn’t rob me of my joy. Yes, living with a disability can sometimes be difficult, but difficulties do not consume or remove all sources of happiness. On the contrary, I find that they serve to enhance my appreciation of the finer things in life.

So, I didn’t quite get the perfect ending to Risa’s story that I expected, but perfection is a lot to ask, isn’t it? Instead, I think I’ll focus on continuing to write my own story and making sure I present myself as I had hoped Risa would be: strong and cheerful, in a wheelchair and all.

And if you still haven’t read “Unwind”, I hope you will. Overall, the author handles the portrayal of disability quite well, and I promise the fast-paced, dynamic plot will keep you on the edge of your seat.

Do me a favor and challenge yourself to see Risa from the perspective of someone who knows a thing or two about living in her shoes – or her wheels.


To note: SMA news today is strictly a disease news and information site. It does not provide medical advice, diagnosticWhere processing. This content is not intended to be a substitute for professional medical advice, diagnosticWhere processing. Always seek the advice of your physician or other qualified health care provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of anything you 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 on issues relating to spinal muscular atrophy.

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