Osteogenesis Imperfecta: Letter to Jodi Picoult: Review vs. Rant

Review Handle With Care
Yes, we are still doing "Reviews" but with our new web design they will be contained with the other articles. This author feels strongly about the book "Handle with Care" by Jodi Picoult. Your thoughts?...
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Dear Jodi Picoult,

I want to begin by thanking you for raising awareness about osteogenesis imperfecta in your newest bestseller, Handle with Care. You’ve guessed it: I have osteogenesis imperfecta, more easily referred to as OI or brittle bone disease. A person with this condition may experience hundreds of broken bones throughout his or her lifetime. The medical term needs explanation, and Handle with Care is full of it: definitions, symptoms, medical facts infused here and there, just as the little girl Willow constantly spouts obscure trivia. Unlike blindness, for example, osteogenesis imperfecta is complicated, specific. You can’t just say a character has OI and leave it at that. And you didn’t, Jodi, you certainly didn’t. 

I understand you choose osteogenesis imperfecta so the character Willow would have severe physical disabilities but mentally be “100 percent there.” You also commented on another occasion that, with OI, “mentally the child is often smarter than its parents” Why, thank you, Jodi! And making Willow so extremely smart creates such a contrast!  Just like the fact that the mother of Willow sues her best friend, the doctor, for wrongful birth, a claim which she may or may not really mean! You’ve really woven quite a knot of plot here, and I appreciate that you reiterate these plot points over and over in the text in case they are forgotten.

A character with a disability is usually “loaded” with meaning or intention, isn’t it true, Jodi? The character with a disability is often not just there as a character. The disability aspect of the character is there for a purpose, such as to change (or devastate! dramatically!) the lives of other characters, exist as a morass of medical complications, or pose an ethical conundrum. This passage from the novel just about sums up the raison d'être of Handle with Care: “what we needed was something more dramatic – a fall, or, better yet, a fracture.” 

In fact, when one has a disability, one’s very existence, in a way, is imbued with meaning. One just can’t be oneself alone when placed in the public eye. The person with a disability constantly makes certain beliefs rise to the surface and challenges stereotypes. What an astonishing existence it is! It is hard to escape the feeling that one is an inspiration in everything one does. Take this statement you penned when a character describes Willow:

In fact, sometimes I was sure that the reason people stared at you with your crutches and wheelchair had nothing to do with your disabilities and everything to do with the fact that you had abilities they only dreamed of.

Ah, yes, Jodi. There have to be hidden compensations, don’t there, so it isn’t all tough luck? It seems a foregone conclusion that a person with a disability must have a compensatory ability: a special talent, a hidden strength that redeems an otherwise blighted existence . As Willow’s sister says of her:

“Leonardo da Vinci invented the scissors,” you said. You were, in general, full information no one else knew or cared about…It freaked people out, to come across a five-year-old who knew that toilets flush in the key of E-flat…I figured it was like a muscle: your brain got used more than the rest of your body, which was always breaking down; no wonder you sounded like a little Einstein.

Likewise, throughout the novel 5-year-old Willow quotes arcane facts including “the hundred billionth crayon made by Crayola was Periwinkle Blue.”  Jodi, I find most young children to be imaginative, playful, and creative. Few children or adults, I dare say, are living encyclopedias or Wikipedias. Nevertheless, you make Willow’s extraordinary trivia-storing mind a compensatory ability for her. She is robotic, a mechanical genius. Why do you have to think of Willow this way, Jodi?  I know it’s…possible…that the little girl could be a savant with a boundless memory. But ask yourself this, Jodi: would the moral issue of wrongful birth take on greyer shades if Willow wasn’t so extremely intelligent?

Let’s take a look at other passages from the novel. When a woman with OI criticizes Willow’s mother, she threatens her with Willow’s astonishing future accomplishments, asking, “if your daughter came home with a gold medal one day, would that convince you her life wasn’t a waste?”  There’s so much proving for us to do, Jodi, such pressure to fight off criticism with our achievements. Or is it this, Jodi – am I reading it all wrong? To be disabled is to be forced to become, or to seem, superhuman. Whatever one accomplishes, whether it be great or humble, seems monumental. Everything is magnified.

At the wrongful birth trial, Willow’s existence – and consequently the existence of others with disabilities – is defended by reference to such heroes as Helen Keller and Jim Abbott.  Charlotte reassures Willow:

I’d fly you halfway around the world to introduce you to people who, like you, beat the odds to become someone bigger than anyone ever expected. I would prove to you that being different isn’t a death sentence but a call to arms. Yes, you would continue to break: not bones but barriers.

Who creates the barriers, Jodi, and are they entirely inevitable? This depends on whether you view a disability through the medical model, or the social model. The social model proposes that “systemic barriers, negative attitudes and exclusion by society (purposely or inadvertently) are the ultimate factors defining who is disabled and who is not in a particular society”. Research these models, Jodi.  But I digress.

Here’s how you describe the disabled man who testifies on behalf of an association of people with disabilities: “he had a degree from Yale Law, was a Rhodes scholar, and had won a gold medal in the breast stroke at the Paralympics.” Wow.  This sets the bar high, Jodi. Is there no place for the “ordinary” person who has a disability? At an OI support group meeting, I do not necessarily find myself surrounded by über-confident, athletic Einsteins. Somewhere between the sepulchral silent spaces of M. Night Shamalyan’s film Unbreakable with its criminally insane Elijah and your child genius Willow is an average reality. People with OI (and people with disabilities in general) are people. They can be nice. They can be sullen. Make mistakes. Be generous. Be withdrawn. Cranky. Optimistic. They’re not necessarily villains or saints. Some are overachievers, some underachievers, some ordinary, middle-of-the road. Or can they never even seem ordinary to you, Jodi, and instead cast an enormous impact at all times?  Willow’s father thinks about her thus:

Your soul was stronger than your body, and in spite of what the doctors told me over and over, I always believed that was the reason for the breaks. What ordinary skeleton could contain a heart as big as the whole world?

Such sentimentality about large hearts and souls does not match Willow’s portrayal. How is her heart especially big? She doesn’t demonstrate exceptional kindness. I thought you wanted us to think of Willow as smart, with astonishing intelligence as her central trait. So what is this sentence here for, Jodi? Later on Piper, the doctor, says of Willow:

"You could sing the alphabet backward: your features were delicate, elfin, fairy-tale. Those brittle bones were the least important part of you."

There we go, Jodi, a poignant prevailing of an ethereal beauty over physical limitations. Willow’s features are a list of three adjectives on for the reader to lick up steadily and discretely, like a cat at its milk bowl. Just the same, I certainly did not get the impression that Willow’s brittle bones were the least important part of her. Her brittle bones are the central fact of Handle with Care. And, unfortunately, realistic characters aren’t just a sum of adjectives, the facts they can recite, or their professions. 

Jodi, you’ve created here a whitebread world. The characters are elusive in their motivations and individuality. Occasional product placements (brand names, websites, TV show titles) are our sole anchors. In Handle with Care, formless generalizations vie with specific facts. There are wavy outlines around the action and vaguely described movements in a reality that somehow denies the visual. Let’s face it, Jodi: the child Willow was beautiful, but she did not have a normal looking body. Amelia’s chapters come closer to what I fear is the true perception of people like me. Amelia describes her as “short and stubby and twisted, like a root growing wrong from the trunk of a tree”  Looking at a photo of a woman with OI as compared to her normal-sized husband, Amelia remarks on the “space” between them and says it looks like “a circus freak show.” You hint at something here, Jodi, whether there is an intrinsic revulsion to what appears starkly different.  I feel this “space” between me and everybody, and it isn’t necessarily physical. You should have gone farther in this area, pushed those boundaries.

Instead, you make recourse to a whimsical “elfin” nature.  Jodi, you make Willow’s “otherness” into something unearthly.  You make frequent reference to her sclera which “flashed blue” and are “electric”.  When she breaks a bone, she enters a strange mystical trance, becoming distant from the world. By the way, it does hurt when “we” break bones.  Tears happen!  It can be painful and frightening to feel your bones crumble like chalk.

On a personal note, Jodi, it isn’t pleasant to hear radiologists gossiping about the appalling appearance of your curved spine when they think you’re out of earshot. And it isn’t pleasant to view your deformed skeleton on an X-ray screen, listening to it mutely scream that the scaffolding that shapes you is abnormal and deformed. Talk about body image issues!

Another thing. People with disabilities aren’t gnawed with a constant desire to do what they can’t physically do. Such thoughts occur now and then, but on the whole one simply gets used to the limitations of the body that one lives in. It is all one ever knows. To one who cannot run, walking is thrilling. And “riding in a wheelchair” isn’t a matter of being “fun” or not; a wheelchair can feel almost like an extension of one’s body.Yet you make Willow constantly lament that she cannot do what others do. “There is a lifetime of longing” in her eyes, you say. I can tell you this much, Jodi: it is not ice skating or jump roping themselves which are longed for. Physical actions are inconsequential trivialities, really. The real loss – the long term loss – is the human interaction that comes with these activities.

I’m sure you did your research and are aware that the symptoms of OI vary widely. As for the accuracy of the novel, I could dispute many points but don’t want this letter to devolve into a series of “gotcha” comments.Your acknowledgement indicates the extent of your research. It also predictably refers to the “inspirational” qualities of a real woman with Type III OI. Yes, Jodi, we exist to inspire. To teach. That’s right, Jodi. Our own personal learning takes place instantly, which gives us that wise-beyond-our-years quality, that preternatural knowledge that is so wistful and moving.

Yet I can’t resist quibbling with you on the ending. Somehow I suspect that a child with Type III OI, enduring the types of fractures you described all along, would not try to walk on an icy pond. She could not even take down her coat from the rack if it was hung too high. She would not desire to tread on a slippery surface, may not be able to kneel or crawl unaided, and would not feel comfortable pressing her delicate bones against a hard surface. Experience teaches children with OI to be careful, almost too careful.

And then, Jodi, did we need the little girl to die? Did we? It was convenient and tidy, I know.  I saw her death coming, foreshadowed in the first chapter when the mother (poignantly!) states “now I knew that you might have hundreds of breaks over the years, but it hardly mattered: you would have a lifetime in which to sustain them.” Yet the preceding chapters are not infused with regret, or guilt, or sadness, or loss.  Something’s lacking, Jodi, given death’s ultimate stamp on the story.

The different fonts work well to differentiate the chapters told from the points of view of various characters. Willow is the only one who doesn’t speak directly to the reader until the end. She is not even afraid while she drowns! What superhuman courage for a six-year-old! Yet think about it, Jodi, think of all the labyrinthine thoughts she could have shared if you cleared her mind of the useless trivia she recites until her dying moment. The child prodigy Willow, super-literate as you portray her, could have contributed more, methinks. And I won’t let you give the excuse that she is dead at the end. If she can quote trivia at the reader while dying, nothing is impossible.

Here and there you pen such statements as “maybe you had to leave in order to really miss a place” and ask “did everyone who suffered speak a different language?” You may hope you’ve let the reader ponder something profound when you unfurl these phrases, but I am not left with much. Ultimately, I find Handle with Care mostly incident, with hardly a moment for coherent thought.  I suppose everything in your book, when taken on its own, is…possible. But a chain of outlandish events – realistic/possible in isolation – becomes unrealistic when linked together, leaving the end result like jigsaw pieces that don’t form a picture, jagged jigsaw pieces, stained with blood, forming an airbrushed collage of suffering. When asked if she would have aborted Willow had she known about her disability, Charlotte narrates that, “I opened my mouth, and then I closed it” This sentence is key. Open mouths, especially uncomfortable, gaping ones that choose not to chew on complex psychological and physical realities, may instead fill the silence with trivia.

*****

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