The quick cut: The diary entries of a girl who died from Cystic Fibrosis at the age of 25.
A real review:
Thank you to Random House Children's for providing the arc for an honest review.
Would you change how you live your life based on a medical diagnosis? For Mallory Smith, the answer was a yes when she was diagnosed with Cystic Fibrosis at the age of three.
Cystic Fibrosis (or CF) is a genetic medical condition that causes the body to produce thick mucus that clogs airways and damages the lungs. It's deadly, difficult to live with, and the life span for those with it is shorter. For frame of reference, the below is from the Cystic Fibrosis Foundation:
"Based on 2022 Registry data, the life expectancy of people with CF who are born between 2018 and 2022 is predicted to be 56 years. Data from the 2021 Registry show that of the babies who are born in 2021, half are predicted to live to be 65 years or older."
I'm a big proponent for getting disability stories out there. We need more people speaking to their experience so that others can properly understand, empathize, and provide helpful support. This book though, is one I cannot recommend.
Why can't I recommend this book? For one simple reason: this book is clearly written to be disability porn (aka disability focused inspiration porn). For those unfamiliar with the term, inspiration porn is a term used to describe the objectification of disabled people and their experiences for the benefit of non-disabled people. Mallory plays sports, has friends, and becomes a well known advocate in the CF community. She's meant to be inspiring and a beacon of what you can do with this genetic condition. The truth is that she had many of those opportunities due to privilege, not some inspirational power of will.
Mallory's journal entries fall into two generic topics: CF conversations and life choices. The life choices she talks about the most are relationships, boyfriends, and sports she played. The CF conversations are actually really insightful when it comes what CF patient's life is like. I loved that part.
The life choices part of her entries really only served to point out how privileged Mallory was. She went to Stanford, moved multiple times to get the best care, and had multiple opportunities to do exclusive work many could never dream of. I genuinely lost count of how many times she went to Hawaii she went so often. She had the resources and support available to get her the best care. This is the exception, not the rule. I would love to hear someone's experience who is of average privilege and resources. That would tell us so much more about how the medical system needs to improve.
A book that fails to tell a true disability story and provides inspiration porn instead.
My rating: 1 out of 5
ความคิดเห็น