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.
