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.
I Live With Peter Pan by Missy Vaughn
A softcover book aimed at children, the author, who has a young son with Down syndrome, explains that she was inspired to write this book when faced with explaining Down syndrome to her own children. She apparently hit upon the Peter Pan comparison – a boy who never wanted to grow up . . . .
Read the rest of my review here.
Sometimes I forget that the whole reason there is a need for advocacy is because the world my son was born into is not entirely kind or accepting. It’s easy to write things here on my blog and feel a sense of rightness, and be lulled into believing that if I explain myself well enough, of course people will get it. Not that everyone has to agree with me – seriously, that’s not it. With regard to advocating for Finn and trying to raise awareness, the bottom line to me is this: are you a person committed to doing your part to make the world a kinder place for everyone, or not? I guess another way to put it is, are you part of the problem, or part of the solution?
People want to cling to their rights and freedoms – the right and freedom to think and say whatever they want, with little or no regard to how those views and words might impact someone else. Just because you can, though, doesn’t mean you should.
I guess I was a little surprised that a couple of people left comments on my recent People-First Language and Stereotypes post defending . . . well, stereotypes. I’m having a hard time understanding how anyone can defend this or believe that it’s not offensive. I think Michael explained it best:
”All redheads are adorable” is a generalization. “All Jews are stingy” is a stereotype. To be sure, a stereotype is a form of generalization, but by no means are they synonymous. In the former, one might focus on the commonalities, but they don’t define the subject. You know there’s more to the redhead than that he’s adorable. Stereotypes, on the other hand, and by design, ask you to not look beyond the stereotyped characteristic; they dehumanize.
I think maybe people think that stereotypes are okay as long as those stereotypes are casting positive characteristics on a group of people. Why would anyone be offended to be told that their kid is seen as “happy” and “loving”? Think about other stereotypes that are supposedly positive: “Black people are such great athletes,” or “She must be a good cook, she’s Italian!” or “Women are so nurturing,” or “Boys are really good at math” or “Gays are such good decorators.” Nobody gets away with those kinds of views anymore. So why is it okay when you’re talking about people classified by disability?
How would these fly: “I love epileptics! They’re so down to earth.” or “Diabetics are great! They have such great senses of humor.” or “Cerebral palsy people are so awesome! They’re such nature-lovers” or “Fat people are so much fun to be around! They’re so jolly and they always know where the good food is!”
Any time you stuff an entire class of people into a narrow, rigid box, it’s wrong. It’s hurtful, and it’s offensive, and it strips them of their humanness and individuality. It’s really just a way of people dealing with their own feelings of discomfort about people who are different from them. It’s arrogant and presumptuous to think you have someone pegged based on one aspect of their humanity. When people say things like “I love Downs kids! They’re so loving and happy!” what I really hear is “I don’t need to bother getting to know your little boy or seeing him as an individual, because I already have him all figured out!”
How would that feel to you? If it were you or your child being stuffed into a box like that?
I’m not even entirely sure where these stereotypes about Down syndrome come from. There might be truth to the impression people have about kids with Down syndrome being happy and loving, but the same can definitely be said about typical kids, too. A lot of kids – whether they have Ds or not – are happy and loving. And some are not. (I keep thinking about that mom who is a special ed PE teacher . . . I wonder if she’s ever stopped to wonder what her “Downs kids” think of her. Maybe some of them think she’s annoying. I wonder if she’s ever considered the possibility that they even have the capability to form impressions and opinions like that.) Maybe Down syndrome still makes people so uncomfortable that they respond to this discomfort by focusing on characteristics that are really present in the general population, but that somehow make them feel better about their discomfort about Down syndrome.
As for Finn, well, in a lot of ways he’s a typical three-year old. In this ongoing science experiment I’ve been engaged in called Child Rearing for the last almost 15 years, I’ve had the opportunity to observe at close range five other three-year-olds before him. Is he loving and happy? Sometimes. He’s very affectionate with his family, that’s for sure. Is he indiscriminately loving and affectionate with strangers? Absolutely not. And all of my kids have been pretty affectionate with their family, so I absolutely don’t chalk that up to the fact that Finn has Down syndrome. He’s not extraordinarily happy, or unhappy. He’s certainly not mindlessly cheerful. He can throw a mean tantrum, and is very adept at both experiencing and expressing displeasure. He throws things he doesn’t want, and he screams when he gets mad. He whines and does the “limp noodle” thing when he doesn’t want to go somewhere. Yes, he can be a pain in the ass, my sweet little Downs boy.
Anyway, I’ve probably belabored this more than advisable; people are going to see things the way they want to see them. I just want my kid to be seen as a unique individual, that’s all.
When I was at school waiting for my kids to be let out yesterday afternoon, another mom was chatting with me and she began admiring Finn. She teaches special ed PE at a different school. Yesterday she said to me, “I just love my Downs kids! They are soooo precious. They’re all just so lovable.”
I just felt myself go kind of numb. This type of thing really deserves a response, but it’s hard to know what to say when ignorance is personified in a fellow mom standing just inches away from you, and it’s cloaked in sugary kindness. So I just gave her a tight smile and didn’t say anything. And of course kicked myself for the rest of the day thinking of all the things I could have/should have said.
What bothered me about her comments (aside from the fact that it’s not the first time she’s said such things to me – this is a pretty regular thing from her)? I know she means well, I know her heart is in the right place, and I know it’s important to judge someone’s behavior in the context of their intent. At least she wasn’t saying ugly, nasty things, right? It’s still painful, though. Here’s why:
First of all, she is a special ed PE teacher! Which means she deals with kids with various diagnoses and disabilities all the time. And she still doesn’t get it. She still doesn’t get why People-First Language is important, and why stereotypes are derogatory and hurtful. I find this so discouraging!
So what is it about People-First Language? Isn’t it just another way for us parents of kids with special needs to be giant pains in the ass, to insist on Political Correctness because we secretly resent having a child with special needs so much that this is one of the only ways we feel like we can get a handle on the depressing situation we find ourselves in?
No. Okay? Just no.
When you look at my son, I want you to see a PERSON. A little boy. A human effing being. When you say “Downs kids,” you are making it very clear that you don’t see the person, you only see the condition or diagnosis. It’s dehumanizing. I’m not asking anyone to pretend he doesn’t have Down syndrome, I’m just asking that you try to see past it, and to the little boy that he is. Down syndrome is a part of him, but it doesn’t define him. It’s about respect and dignity and compassion.
Stereotypes. Hate ’em! And I was going to sit down and write a whole thing about stereotypes and realized I wrote something about a year ago that still holds completely true for me. Please take a look and give it some thought: Stereotypes.