When I heard that there was a new novel that dealt with the subject of osteogenesis imperfecta (OI), I was intrigued. This is the brittle bone condition that I have, and it's quite rare, so I was excited to see it represented in a book by a very popular author.
Here I'll pause to say that I'd never read any of Jodi Picoult's books before. All I knew about her was that she writes what I perceived to be sappy family dramas--not at all the type of thing I normally read. But I set aside my pre-conceived notions to read this because of the subject matter.
When I started the book, I was thrilled with it. Picoult (or someone on her staff) clearly had done a lot of research on OI, and I was impressed with how realistically she portrayed the psychological and physical aspects of the condition. (At times it was a bit too realistic--I did have a few PTSD-type moments while reading her graphic descriptions of fractures and emergency room scenes.)
The story in Handle With Care centers on a little girl named Willow who has Type III OI (a much more severe form than what I have). She's precocious and pretty tough despite being so physically fragile. I definitely recognized my childhood self in her. Other characters include Willow's parents and sister, her mother's obstetrician, and the lawyer the family hires for a controversial lawsuit. The novel raises important questions about disability and who gets to decide which lives are worth living or not. It all continued to seem very promising. However, after a while, I had a major problem with the way the story was being told.
[Stop reading here if you don't want to know any more specifics about the novel or how it ends. If you do read the book, please come back later and read the rest of this post and let me know what you think.]
Picoult writes the book from multiple points of view, alternating chapters told by Willow's mother, father, sister, doctor, and lawyer. Did you notice anyone missing there? Yup--Willow does not get to tell her own story or make her own voice heard. This pissed me off to no end. It absolutely reinforces one of the most frustrating things I experienced as a kid with a disability--being talked about like you're not there, as if you're a baby or an inanimate object with no opinions of your own. (Never mind the fact that Picoult did an absolutely dreadful job creating individual voices for these disparate characters.) The story kept taking more and more ludicrous turns (the lawyer's birth mother for whom she's been searching just happens to end up on the jury? Puh-lease!) and the characters became less and less likeable, but I kept on reading.
But then I got to the end. Ladies and gentleman, I don't endorse this type of behavior, but when I reached the end of this novel, I physically threw the book (library property--gasp!) across the room. (It was unharmed.) Because get this: the last chapter is finally narrated by Willow herself and...guess what happens. She DIES. She freakin' dies, in a scene fraught with very cheesy symbolism (the only kind of symbolism Picoult can write, as far as I can tell). Infuriating. Willow was the center of the whole story, but Picoult chose to make it be about the rest of the characters and how Willow's OI had affected them. And then, of course, we can't have a character with a disability go on to live an interesting, productive life--nope, she has to die tragically.
I looked the book up on the internet afterward and saw that it has gotten many bad reviews. But I didn't see any reviews written by anyone with OI, or anyone who mentioned specifically being upset as a reader with a disability, so I felt that I needed to put this perspective out there. The world does not need any more patronizing portrayals of people with disabilities, especially kids with disabilities (don't get me started on the Jerry Lewis telethon). I had hoped that such a popular author as Jodi Picoult could raise awareness of OI (which I'm sure she has), but do it in a way that was not belittling or demeaning to the population she portrays. I was wrong. Maybe if I want a book like that to be available to the public, I will have to write it myself.