A while back I posted this review of Missy Vaughn’s I Live With Peter Pan, a self-published book aimed at explaining Down syndrome to young children. As I stated in my review, I didn’t care for the book, as I feel that, however well-intentioned it might be, it paints an unfair picture of Down syndrome and does a disservice to those touched by Down syndrome.
Normally, I read a book, post a review and that’s that. There are good books out there and not-so-good books. Sometimes, however, a book keeps drawing me back. The Shape of the Eye was like that; it’s so full of good information and skillful writing that I really wanted to promote it.
I Live With Peter Pan keeps drawing me back, too, but not in a positive way. It’s more than the fact that I feel that the premise of the book promulgates an offensive stereotype – it’s the fact that the author has undertaken a zealous campaign to promote her book as a learning tool, with hopes and efforts being made to get as many copies of the book as possible into the hands of families of children with Down syndrome, as well as schools.
Though I did have a brief interaction with the author after I posted my review a few weeks ago (and not a very friendly one), my goal is not to launch personal attacks on her. I have no doubt that she loves her son and feels that she has undertaken a positive endeavor in writing, publishing, and marketing her book. That said, I strongly object to equating children with Down syndrome to Peter Pan, who never grew up or never wanted to grow up. I think her belief that this is a positive analogy is extremely misguided, and rather than being an instrument of advocacy, or even accurate teaching, it encourages misconceptions and sets ideas about Down syndrome back at least a couple of decades.
Let me be clear: Finn is no Peter Pan. He’s a kid who may be different in some ways, but a kid nonetheless, and one whom I have no doubt will grow up and do things that will blow my socks off. I don’t want him held back by this notion that he will always remain charmingly childlike. I’m not kidding myself; I know that Finn will always have certain limitations, but who knows what those limitations might be? So Michael and I and Finn’s brothers and sisters will continue to shoot for the stars when it comes to the possibilities of Finn’s life.
Because I feel so strongly about this, I am heartsick over the fact that Missy Vaughn, and some no doubt well-meaning friends and family of hers, want to put this book, I Live With Peter Pan, into the hands of families and schoolchildren – the vast majority of whom will likely have had no previous exposure to Down syndrome. This is not what I want people to learn about Down syndrome. This is not what I want people to learn about my son.
So I make an appeal here: if you object to children with Down syndrome being painted as caricatures, being boxed in by stereotypes, being equated to the likes of Peter Pan, then please speak up. Talk about it, spread the word, and let the author know that however well-intended her message might be, it’s not one that the greater Down syndrome community wants to see promoted.