So I've been hearing a lot about this new book called Wonder which is a fictional story about a young boy who has a facial deformity and the story is written from several different perspectives such as family members and class mates and the young boy himself. Now I have not read the book myself although I do plan to at some point but the way I understand it is that it is never mentioned that he has Treacher Collins Syndrome but the author has stated that that's what she has based his condition on along with other complications.
This book has been widely praised but I haven't heard what someone who actually has Treacher Collins Syndrome actually thinks of it and just wonder if it gives a realistic view or not. I hate to be cynical especially when this book will raise awareness about facial deformities but I just wonder what makes the author qualified to write a book about a young boy with TCS when she does not have it and her children do not have it. It seems from my research that her only real experience of it was when her children reacted badly to a little girl who they saw with TCS. She claims to have done several weeks of research into genetic conditions yet makes up a mysterious complication to complicate his life further....Also he seems to be able to speak and be understood clearly (from the amazon preview) yet this wouldn't be expected to be the case if he has such a severe case of TCS that he has already undergone 27 surgeries and has to have a towel placed under his head whilst sleeping in the car so he doesn't drool over his sister (also in the preview).
I will have to reserve full judgement until I read the book but I have my doubts from my brief time looking into it as to how well it represents the experiences of people with facial deformities and conditions such as TCS beyond the basic level. It also seems almost disneyesque from what I've read of the reviews with some disturbing scenes but with everything turning out all right in the end (again I have not read the book this is just the impression I am getting) and we all know that real life is not usually like that.
So it seems to me that while this book may be what we need in terms of getting rave reviews and people becoming more aware in terms of facial deformities/people who look different, it isn't the book that people with TCS and facial deformities deserve to have tell their story and that's something that's written from real life experiences and which doesn't hold back in terms of the negative aspects and doesn't necessarily have to have a happy ending.
So it seems to me that while this book may be what we need in terms of getting rave reviews and people becoming more aware in terms of facial deformities/people who look different, it isn't the book that people with TCS and facial deformities deserve to have tell their story and that's something that's written from real life experiences and which doesn't hold back in terms of the negative aspects and doesn't necessarily have to have a happy ending.
I read your blog. Like I said many times, please read the book but I don't want you read it if you don't want to but you would definately be more aware and understanding why RJ wrote the book. I think this is actually why she didn't mention a syndrome/a name for Auggie. She didn't want that to be main point for her story. It's about Auggie transitioned to a new school. It's just about him, his family and peers. At least you mentioned that you didn't read the book yet but it's not true you heard opinions from TCS person how they feel about the book, ME! Authors tend to do a lot of research before writing/it would be a smart thing to do. The interaction RJ had with the little girl has TCS but she doesn't mention/and/or doesn't want to mention what syndrome Auggie has...not her priory. It's hard to get in author's head. I really wish she was on this group to share what's on her mind when she wrote this book. What was she thinking?
ReplyDeleteI'm not really sure why you are posting this on my blog when you already posted it on the facebook thread and I replied to it...
DeleteHere's the reply I posted:
Obviously we have debated this before so I don't want to get into this again, just thought I would post it in case Bénédicte (facebook user who posted about the book) hadn't seen it.
What I will say is as I've said before I haven't read the book so I can't say if it's good or bad but it just amazes me that she didn't talk to anyone who has it or any doctors/experts etc. until after she had written the book. If it is so good now imagine how good it would've been if she had made a bit more effort.
... read the book. The author does give a title to his condition. I'm surprised at the length of your fake review seeing as you only have a plot summary to go by.
ReplyDeleteMaybe at some point I will. What title does she give for his condition as that's the first time I've heard that she gave it a name?
DeleteFake review? Really? As I state multiple times, I haven't read the book, these are just my thoughts on the book given what I know and what I've read about it.