What About The Boy by Stephen Gallup

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.

A Few One Month Before Heartbreak Links

I am very tired and need to go rest (waiting for my dinner to finish cooking and my mum to pop round or I'd already be in bed with a book or in a heap in front of the TV).  But I just wanted to highlight how amazing One Month Before Heartbreak has been.  I'm completely and utterly blown away by what we've done and the support we've had.  If you google "One Month Before Heartbreak" you get more than 13 thousand results.  13 THOUSAND.  that's seriously mind boggling.

I've not had time to share very many links or to do more than skim the posts that I've been scheduling to the blog.  I know that Bendy Girl is also exhausted but pleased.  We aren't stopping, we'll continue as long as we have submissions so please keep them coming!

I thought that I might highlight a few links that have caught my eye.  I'll probably do this every day for the next few days as I go through and read and digest.

You Will Never Take Away My Shoes

Loved this post!  It reminded me of the "I will wear purple" poem

The Best Thing DLA Allows Me To Do

As a former RDA member myself (I went for 14 or 15 years and only stopped when I went to uni) I was nodding along as I read and smiling as it brought back memories.

Take Two

Heather and I are blog friends.  Reading this post gave me new insight into her and her family.  I hadn't realised how long she'd been dealing with DLA etc.

Why I Keep Trying.

Totally blown away by this post.  I didn't expect the level of support we got from non disabled people.  Hoped for it but never really expected as much as we had.


Disability cuts don't affect me

Love the honesty in this post and even though we are in very different situations I could relate to a lot of it.

I will post more links tomorrow, my concentration is shot from all the  work I've done this weekend and I can't give the contributions the attention they deserve

Melting Pot of Links

To celebrate the fact that I upgraded to the latest version of wordpress and not only is it working properly, it's the first time in about six months I've upgraded and not had it go slightly wrong... I thought I would share a few links (because working WP means I can use the VRE and not code the links myself, yay!)

Nelba over at Chocolachillie wrote a post about perspectives to medical care and disability and life in general (I guess).  It's well worth a read.  And it's called Cheap Shoes Always Squeak which is just the best blog post title I have read in, basically, forever.

Kathryn's Ryn Tale's blog is always worth a read.   She makes me think and I like blogs that make me thing.  From The Outside In touches on a topic that I have wanted to write about for a few weeks now but obviously does it much better than I ever could.  Still when I'm over this random viral thing I seem to have I will give it a try.

Pedestrian Hostile held the latest Disability Blog Carnival.  It's theme was Simply The Best (does anyone else get a mad urge to run around the house singing Tina Turner when they read that or is it just me?!).  I need to find some time to read more of the contributions but absolutely loved the ones I read so far.

If someone could tell me the name of the song in Moulin Rouge that goes on about how "We Could Be Heroes" (forever and ever...) I would love them for at least the next day or so.   Because The Goldfish wrote a post of the same name and now I have the song in my head.

Simply The Best

The next Disability Blog Carnival is on Thursday and it's theme is "Simply The Best"

I love this as a topic and was thinking about what to write about. Several ideas crossed my mind but nothing really seemed *right* to me.

Then just as I had written off this as a topic that wasn't for me, it hit me.

The thing that had made me happiest today had a no longer really noticable to me disability beginning and that's what's Simply The Best.

At this current moment in time, I would say that meeting people who would never have come into your life if not for your disability is Simply The Best thing about having CP.

My oldest friend, Maryse, was my physio when I was nine. We are still close now even though we haven't seen each other since 1999 and she lives in Germany. No CP would have meant no physio and that would have meant I never met someone who I love dearly and who was a confidante and a trusted adult whilst I was growing up - and who was able to turn the trauma of physio into something I looked forward too.

Then there is Ruth. She was disability support coordinator when I was at college doing A'Levels. She helped me learn an important lesson about other people, about attitude and about self worth. It was a tough time that led to that incident and it was disability related. Take away the CP and the circumstances would have been different. But I am glad I learned those lessons - I have friends who tell me they wish they knew them too.

Some of my best friends I met thru disability activities or because they were my or my friends carers. Some of them I was paired with at school so we could receive support together - at the time I hated that, and I hated a lot of them because I resented being made "different". I got over that, they became friends and the rest as they say, is history...

Or it could be the journey care assistants at my local stations... I couldn't exactly say they were friends but they always say hi when they see me, stop me in town, ask how I am, make me laugh, hug me (sometimes) and occasionally fight over who gets to help me on and off of the train. Knowing I can trust them really helped me when I first started traveling independently on the trains. They are all really good people and they brighten my day.

But if it wasn't for my chair - they would just be "station staff" and so I have another reason to be grateful for CP, more people who touch my life in a simply way and enrich it so much.

Before I went to university I had academic support at school (learning support assistants) but I had never had a true carer from outside of the family. I was a little nervous about that. But mostly nervous about the going to uni thing as a whole.

Incidentally, I realised (and was a bit shocked by) totally by accident this morning whilst surfing facebook and looking at Birthday reminders that the day I left home and went to uni was seven years ago TODAY.

My first ever carer was Kim (this entry has the story of when I met Kim and my first day at uni). She drove me a bit crazy but we got on well and grew to be very close. Unfortunately, as happens I lost contact with her for several years. Last week we got back in touch through FaceBook and we e-mailed.

Tonight I rang her and it was so wonderful, curled up on my bed with the window open and a breeze drifting over me. It was dark and the only light came from the twinkling of my fairy lights round the window. Just me and a phone, talking to a much loved friend who brought back so many memories, who helped to shape those memories too. I reckon it must be at least four, if not five, years since we spoke. It could have been yesterday.

We made plans to meet up and catch up the Saturday after next. I can't wait.

And I was left thinking that whilst there are many small things and experiences CP has brought into my life. For me, what is Simply The Best about being in a chair is the wonderful people that are and have been in my life because of it.