02 February 2011

SPOILER WARNING: Handle with Care by Jodi Picoult

The back of the book blurb essentially says that the book is about the parents of a kid with OI who decide to sue their obstetrician for "wrongful birth" in order to pay Willow's medical bills.

After the jump spoilers will abound. So if you haven't read it and don't want to be spoiled, don't read on.

I've been avoiding reading this for years because I knew it'd make me angry. Finally I succumbed to listening to the audiobook.

Quick comment on the audiobook production: It really wouldn't have been hard to research how medical terms like "pamidronate" and "bisphosphonates" are pronounced. The actress who played the voice of Charlotte sounded more like computer generated speech than an actual human being. I realise that some people do have strange elocution, but surely a requisite for a voiceover actress is to not sound like a computer? Now, onto the actual book...

I've seen 2 different versions of cover art for this book. There's the picture on Jodi Picoult's website and the cover for the audiobook. The child in both photos clearly doesn't have type III OI. It reminds me of the case last year of a book about a black character with a picture of a white girl on the cover. I guess the publishers assumed that a picture of a girl with a triangular face, barrel-shaped ribs and bent bones wouldn't sell books.

As with all media representations of OI there are some bad facts. The bad facts start early on in the book while Charlotte is pregnant when they claim that the only types of OI which lead to babies being born with fractures are types II and III. I know loads of type IVs that were born with breaks. The most incredulous bad fact of the lot is after Willow breaks her scapula when the bones in the forearm are referred to as the "tibia and fibula". Really? Does no-one proof-read manuscripts nowadays?

There's a continuity error at one point: Willow breaks a femur one weekend when "all the orthopods in the country are at a conference in Omaha." Couple of minutes later suddenly the orthopods are all in San Diego. And it's not like they're neighbouring towns...

There's another, well, I guess it's a continuity error around rodding Willow's femurs. After Willow breaks her legs at Disney World her parents explain that she can't have her femurs rodded until they've healed. But then later in the book she has her femur rodded to stabilise a break rather than sticking her in a spica for months. As I was listening and they said she couldn't have her femurs rodded until her breaks had healed I thought "eh?" Because I know full well that rodding is used to support breaks and is commonly done while a bone is broken. But I figured Picoult just hadn't researched around rodding that well. Until rodding is used later on in the book. Of course it's perfectly possible that there was some good medical reason why rodding wasn't an option when she broke both femurs but was a viable alternative to a spica later on. But Picoult should've explained that reason to the reader so it doesn't look like a continuity error when one minute they're saying "can't rod when broken" and the next "rodding supports breaks!"

The incident which kick-starts the main story is a series of improbabilities. I realise most fiction relies on unlikely events, but one can only suspend disbelief so far.

The O'Keefes go to Disney World. While there Willow slips over on a napkin and breaks both femurs. Remember Willow is supposed to be a type III: I realise bisphosphonates have massively improved the physical ability levels of people at the more severe end of the OI spectrum, but, really? We're supposed to believe that she was going to walk unaided around the vast expanse that is Disney World?

Willow gets taken to hospital where her doctor doesn't believe she has OI, sees all her old fractures on X-rays and calls social services who call the police.

Parents of children with OI being falsely accused of child abuse is unfortunately not uncommon. But these are usually children at the milder end of the spectrum who don't (literally) have OI written all over their face. Even if the doctor didn't immediately think "OI" upon her arrival, when her mum said "Willow's got OI" the doctor should've just looked the fact that she's five but the size of a toddler, her blue scleras, her triangular face and her barrel-shaped ribs and gone "oh, yes. So she has."

The social worker asks Willow's older sister Amelia "does anyone ever hit Willow?"

Amelia remembering the time another kid hit Willow in the playground and broke something answers "yes."

The social worker isn't interested in hearing any further explanation and whisks Amelia into foster care and tells the police to take the parents away.

Now I've done more than my fair share of training in child protection. You do not ask leading questions because if you put words into a young person's mouth at that stage the case could be thrown out of court. You allow a young person to explain in their own words. No-one wants to let actual child abusers get away with it.

Willow's parents Sean and Charlotte get arrested. Sean is a police officer in New Hampshire and knows protocol. He knew that the police should've interviewed any of the many witnesses that could verify that Willow slipped over on a napkin and that no-one hit her.

Sometimes shit happens. It is possible to come up against a doctor so negligent they can't recognise OI that obvious. It is possible to come up against a social worker who's trying to trick kids into making a false declaration of abuse because she's not met her annual targets for numbers of kids taken into care. It is possible to come up against cops who just want to lock people up for the fun of it without bothering to check if a crime has actually been committed. It's even possible to come across all three of those people in the same day. Improbable but certainly not impossible. Not even as improbable as Willow being able to walk unaided around Disney World.

Upon returning to Bankton NH Sean drags the family to see a lawyer wanting to sue over the series of failures they encountered whilst away. The lawyer tells them "you have no case. They were only doing their job and trying to protect a child. You wouldn't want them to do anything else."

Erm... the negligent doctor? The social worker who resorted to trickery? The cops not following procedure? Personally I'd have gone and found a better lawyer.

The lawyer says they have no case there but looks at Willow and immediately assumes her birth was wrongful. So asks a few questions about Charlotte's ultrasounds during her pregnancy and decides "yes, you do have a case. Just not the one you were thinking of."

So after some umming and ahing Charlotte and Sean realise that winning this legal case would mean that never again would they need to fight with the medical insurers over an operation Willow needs. Willow would be able to get a new wheelchair when she needs one, not once the minimum 5 years decided by her medical insurers has passed. The family would be able to afford a new wheelchair accessible vehicle. Willow would be able to afford any adaptive equipment or assistants she needs to go to university and live independently.

The downsides are that Charlotte has to sue her obstetrician best friend, they have to stand up in court and swear under oath that they wished Willow had never been born and the family has to survive near self-destruction. First Sean and then Amelia jump ship and testify as witnesses for the defence in an effort to make sure at least someone's said out loud that they're glad Willow was born, for Willow's sake when she reads about it in the papers.

In the pre-book blurb (e.g. Picoult's website, etc) it's implied that Charlotte was lying under oath when she swore she wished Willow had never been born. But as the book goes on it starts to paint a picture that, actually, if she'd been told about Willow's OI at the 18 week ultrasound stage; she'd have had a termination. "I wish my child had never been born because she's got crappy bones," is a very different story to "I'm glad I've got my wonderful daughter, but I'm going to stand up in court and say that I wish she'd never been born in order to cover her medical bills."

Blah, blah, blah; the O'Keefe's win their case and get $8 million in compensation. They never actually cash the cheque as a plot device to try and salvage some reader sympathy for Charlotte.

Long before I read the book I knew that Willow died at the end. Throughout the whole book they kept banging on about people with OI having shortened lifespans and what would happen "if" Willow made it to adulthood. Yes, some people with OI do die of OI-related conditions such as chest infections (because we have tiny lungs) or a fatal stroke in people with basilar invagination. But they tend to be people at the more severe end of the OI spectrum. And remember it was set early on that Willow was able enough to walk around Disney World. People with OI die of all sorts of "normal" things; cancer, heart failure (like my mum), etc. So I was actually incredibly relieved when I got to the end of the book and discovered that Willow died falling through thin ice on a frozen pond.

Instead of cashing the compensation cheque Charlotte slips it into Willow's coffin so it's buried with her. As I said before, clearly a device to try and make the reader like Charlotte again. Thing is, it didn't make me like her. It made me scream "you idiot!" The O'Keefes went through hell to get that money so they're well aware that other families with a member with OI have the same expenses. If she'd cashed the cheque and donated the $8 mil to the OIF the money could've been used to buy wheelchairs and other bits of kit for people with OI who were struggling financially. Other OIers need that money more than the malpractice insurance firm. So Picoult's attempt at making me like Charlotte failed completely.

I was incredibly surprised by the characterisation of Willow; by which I mean that I was incredibly surprised by how much Willow was like me at that age. She has a remarkable memory for everything and a reading age far, far, advanced of her chronological age. Just like her I read anything I could get my hands on when I was little:

I still sit like that - with my leg sticking out - to support Berliner/broadsheet newspapers when I read them.

In fact I spent so much time waiting for X-rays at my local hospital that I could spell "danger" and "radiation" from reading the signs on the door at about the same age as my peers were learning to spell "cat" and "dog". I have to admit I envy the internet access she had, I wish it had been around when I was little and stuck at home with limbs in plaster. Because I know I would've been just like her and ended up setting up Gmail accounts for the family pets out of boredom. In fact, I am just a 31 year old version of her: My cat tweets with a little help from me.

Not all the characters are perfect. Amelia dates a teenager with OI she meets at an OIF conference. At first she lies and tells him she's a type 1. When she admits she doesn't have OI his response is "I'm glad. If you care about someone you want them to be healthy." Hello? You'd rather date a non-disabled person who lies to you than a cripple? But then I suppose some people are that self-loathing, especially young people who haven't been exposed to strong disabled role models.

Ultimately the book left me feeling glad to be British: We have an NHS so us British folk with OI don't need to worry about medical bills (for now, at least). The NHS has a wheelchair service so kids like Willow aren't at the age of 6 still having to use the wheelchair they were prescribed when they were 2 and half the size they are now. We have Disability Living Allowance (DLA) to cover some of the extra costs of being disabled (also, for now at least). We have the Motability scheme which allows you to forfeit the mobility component of your DLA in exchange for a car. We have Disabled Students' Allowances to cover the extra costs disabled students face when going to university. We have Direct Payments to allow disabled people to pay for the assistance they require (though the future looks bleak for some 21,000 care users). We have Access to Work to cover the equipment and assistance disabled people need in the workplace (though it's being cut back too). All these things we have in the UK are what the family in the book needed and didn't have so they brought the court case to cover those costs. That it left me with such a strong feeling of being glad to live where I do (until the ConDems fuck it up, of course) means that the storytelling was effective.

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