A few months ago I had an e-mail from Stephen asking if I wanted to review his soon to be self published book (it's out in September). You can read more about the book on Stephen's blog or find it on Amazon.
Here's the text on the back:
Nobody knew what hurt little Joseph, and no one was offering a way to help him. He cried most of the time, and thrashed about as if in pain. He wasn't learning how to crawl, talk, or interact normally. Doctors told his parents to seek counseling, because nothing could help their son, and the quality of their own lives was at risk. Refusal to accept that advice changed their lives forever. WHAT ABOUT THE BOY? A Father's Pledge to His Disabled Son chronicles a family's rejection of hopelessness and their commitment to the pursuit of normalcy.
The day this book arrived a friend was here and we both looked at it and agreed I would either love it or hate it. In reality it had both good and bad bits and I can't say I loved it or hated it. It was interesting and definitely has a way of drawing you into events and holding your attention. Towards the end I did begin to be very frustrated by the book however as the author shared some views the total opposite of what I agree with and which I found shocking.
The other thing my friend and I were discussing looking at the book was the title - What About The Boy? I took that to mean that it was about a fight with medical staff etc to see Joseph for who he was and to give him the chance to be a little boy - to do fun things and have more in his life than just various different therapies. However I hated the use of The Boy in it and thought What About Joseph would have been a better title. Because, just like me and everyone other person disabled or otherwise, Joseph deserves to have who he is recognised - using The Boy struck me as a touch of depersonalisation. My initial ideas based on the title proved not to be quite right. Unsurprising, I'm sure you'll agree.
Apart from a few stylistic errors this was quite well written. To be fair, what I consider errors or inappropriate wording might not have been but instead been the difference between English and American - such as the use of the term "hurt children" to refer to kids with disabilities. In England that would be pretty much unacceptable in that context as it's not a social model term. But it's my understanding that America is much more medical model based so maybe it's acceptable there.
I find myself somewhat wary of recommending this book because some of the practices Joseph's parents tried in efforts to help him strike me as naive and at times downright dangerous. Joseph's parents showed a lot of people the alternative therapy they'd been shown how to do - including some doctors. I was very surprised that 1) Joseph didn't end up injured at any time because of it and 2) nothing happened when they showed the doctors other than them being told to stop wasting their money and time. But... that said there's nothing to say that didn't happen and just didn't make it into the book.
NOTE: I am deliberately not mentioning any of the therapies used because I don't condone them as a whole (a few sort of make sense but not when applied in the extreme) and don't want people coming to my blog looking for info on them.
On the whole I would say this is a very interesting read and it kept me involved the entire time. The love for Joseph shines through the book and the level of dedication shown to him is to be applauded. I'd say to read this if you want to gain an idea of what it can be like to be a disabled person and especially to be the parent of a disabled child. I wouldn't recommend this book if you're looking to it for treatment options simply because as I said above I personally don't condone the treatments - although I don't know enough about them - and all such decisions should be based on more than just anecdotal evidence.
I'm glad I read this book because it made me think a lot and consider a viewpoint very different to what I believe in. I'll probably check back on Steve, Joseph and the rest of the family from time to time on their blog because the book made you care what happened to them.
I plan to see if my mum wants to read the book because I'd be interested in her take. I'd also love to hear what other disabled people and parents of disabled kids think of it.
3 comments:
Thank you for sharing your reaction to my book.
Your hands-off approach regarding specific therapies is fine. My intention in including the details of what we did was not to prescribe but only to describe what our search for ways of helping him led us to. You might be interested in a blog post I put up just today that's along the same lines: http://www.fatherspledge.com/rainbow-redux-whos-immune-to-hope.php
Incidentally, "hurt kids" was terminology from the Institutes. For them, all these developmental disabilities represented brain injury. My use of the term was just taking it straight from them.
The title actually comes from a song in "Tommy," by The Who. I thought it had a memorable ring, while showing where I wanted the focus to be. Now that the book is done, I think the focus in advertently strayed to Judy, despite my best efforts.
Thanks again for reading it and for your comments.
Sounds interesting. I'll look out for it.
I read your review of this book with interest. I first read, What about the Boy, two years ago and what stayed with me the most was the fact that there is not one particular therapy that works and that parents often know what is best for their children, despite medical experts telling them otherwise. If any this book highlights the reductive biomedical model of western health and illness and cautions against following any course of treatment blindly. The book will make you cry too, so be warned.
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