Well I finally got around to buying this book, I had written a preview of it a good while ago which I got a fair amount of criticism due tot he fact that I hadn't read it yet. But now I have and I can give my full opinion of it. I have to say that many of my concerns in my preview turn out to be true. The author has said herself that the main character August has Treacher Collins Syndrome complicated by another mysterious medical condition. Despite this she proceeds to ignore or get wrong many aspects of living with TCS is actually like. For one thing everyone seems to be able to understand him perfectly. Also for some very strange reason August hasn't needed a hearing aid from birth but his hearing has somehow got worse over time. He also apparently hears a lot of white noise but then whenever he gets the hearing aid that cures him of it, its all a bit strange. He also gets used to the hearing aid extremely quickly it seems. It took me quite a while to get used to changing from analog to digital hearing aids so I can't imagine how long it would take me to get used to wearing a hearing aid after having not worn one. She mentions his difficulty eating without making a mess but nothing about how long it takes nor anything about him needing a feeding tube when he was young/him having a scar from one. It would be nice if the author had actually called his condition Treacher Collins Syndrome instead she calls it by a far less common name which is a shame because she could have raised so much more awareness of it.
The problem is that the whole message of the book is being kind and revolves around the way people react to how August looks. Its hard not to think that the author might have been better of using a condition that purely affects how a person looks rather than a condition such as TCS which has affects so much more to spread this message. I'm still struggling to get my head around the fact that the author wrote the book after only doing internet research. As someone who actually has the condition it is frustrating that many people's knowledge of it will stem from this book which isn't accurate.
I know I am maybe being too harsh on it but I think someone has to take a step back and say hold on a minute this book isn't quite as good as everyone is making it out to be. Its crazy how popular it has gotten with schools and other organisations jumping all over it. I understand the message is of being kind is a good one to teach kids but I don't think you need a specific book to do that. I recently read that the book is going to be turned into a movie which I think will be very interesting to see for a number of reasons. Firstly how are they going to portray August? Are they going to have child with a facial disfigurement? Are they going to have a "normal" child and use cgi/makeup to make them look like they have a disfigurement? Or will they go down another route for example not showing his face at all. It will be also be interesting given how the book switches from one characters perspective to another each chapter and how much of the book is the thoughts of the characters.
This was quite a difficult post to write, its rather hard to review a book like this in an unbiased way or from the point of view of the general public. That said it will probably be lost in the sea of positive reviews and that's fine but I felt like I as someone who actually has TCS should give my thoughts on it.
Thanks for reading.
