When my son Finn was but a wee newborn lying on a tiny bed in the NICU recovering from surgery to correct a congenital intestinal atresia, a blood test confirmed what my midwife had suspected: that he had Down syndrome. I thought that empowering myself with information might be a good idea, because for the most part Down syndrome was a huge mystery to me. Really all I knew was that people with Down syndrome looked different, they usually had bad haircuts and wore bad clothes, they were prone to heart defects and maybe some other vague medical issues, and most of all, that Down syndrome was definitely something awful that nobody wanted their kid to have. My husband and I headed to the book store to see if we could find some books on the subject (and I’ll never forget, we saw a young woman waiting in line to pay – a young woman who had Down syndrome). We ended up buying a small stack of books about Down syndrome (because why would one be enough?). One of them was Babies With Down Syndrome.
Okay, let me stop right here for just a minute. I think almost every parent who’s had a baby with Down syndrome has at least heard of this book, if not bought it or had it given to them. It says on the cover that it’s “The First Book Parents and Families Should Read.” I’m here to tell you that it’s most definitely not the first book parents and families should read. You need a fairly thick skin to make it even partway through this book. It’s full of unattractive black and white photos, statistics, and cold, hard facts about Down syndrome. And if you’re new to this, it might be easy to think that your child will look like one of those depressing photos, and that every statistic and cold, hard fact will apply to your child. That is not the case. If you are a new parent of a child with Down syndrome, do yourself a favor and steer clear of this book. If it’s already in your possession, throw it in the trash, or at least pack it away in the attic until you are farther down the path in this whole adventure.
So it was Babies With Down Syndrome that first informed me that my wee newborn, whom I already loved with a physical ache and felt a ferocious protectiveness of, was mentally retarded. Not only that, but sterile, as well.
This was my very first experience of having the term retarded applied to my child. To say I cried doesn’t begin to describe the gut-wrenching grief and utter terror I felt about that word. What did it mean? It conjured up all kinds of unsettling images and fears. Would he be able to function at all? Would he have emotions? Would he know his family and be able to bond with us? Would he ever be able to communicate with us and with the world in a meaningful way?
I think when you have a baby and find out that baby has Down syndrome, realizing that that means “mental retardation” is probably one of the absolute most painful aspects you have to come to terms with. There are so many factors behind this – many of the fears and questions I had are probably very common. When we set out to have a baby, we imagine certain things about that baby, and mental retardation isn’t generally one of those things.
“Retarded” has become an ugly, dirty word. It didn’t start out that way, however. It started out, many years ago, as a clinical description of a person with an intellectual disability – or, more to the point, a lower-than-average IQ.
Webster’s New World College Dictionary defines retarded as: “slowed or delayed in development or progress.” (It also notes that retard is “an offensive term of contempt.”)
So what’s wrong with that? Doesn’t that, in fact, accurately describe the impairments that are part of Down syndrome? Slowed. That’s exactly how I see Finn. Watching him grow and learn and develop has been very much like watching my other kids grow and learn and develop, only in slow motion. And I figure that eventually he will peak, and that peak will undoubtedly be different, probably lower, than the peaks my other kids will eventually reach. And you know what? It’s okay.
The problem is that retarded has become a slur, a common insult, an easy way to describe just about anything or anyone we find substandard. Because of this, we, parents and other people who love someone with Down syndrome (and other intellectual disabilities), are trying very hard to get everyone to move away from “retarded” and evolve into using softer, kinder terminology: developmentally delayed. Developmentally disabled. Intellectually impaired.
But it all means the same thing, doesn’t it? Slowed or delayed in development or progress.
See, personally, I don’t think I’d have a problem with “retarded” if it hadn’t become a common slur. If it had retained its clinical meaning, and only that, it would be fine. But I don’t think that changing the lingo is the answer – or at least not the whole answer – because I don’t think it’s the terminology itself that’s the problem. The problem is the attitudes that drive the language. It’s about how we view people who are different, and the fact that we so often view people who are different from us as inferior.
The solution is not to change the terminology, because it’s a losing proposition. I would be willing to bet everything I have in the world that whatever “kind” or “respectful” or “dignified” language we insist on and ultimately settle on now, will become tomorrow’s slur. Just watch – in a few years, people will be throwing around “developmentally disabled” the way they throw around “retarded” now. “What? Are you developmentally disabled or something?” Plus, eliminating “mentally retarded” from even clinical use gives it more power, more justification to use as a slur. We can no longer say “Retarded isn’t acceptable as a slur because it’s a clinical diagnosis,” because it will not longer be protected as a clinical diagnosis. You follow me? That’s exactly what happened with idiot and moron and imbecile. Those were all, once upon a time, clinical terms used to describe people with intellectual disabilities; now they are slurs that most people – even people touched by Down syndrome – don’t think twice about (personally, I cringe a little every time I hear any of those words).
I’m not crazy about the words “retarded” or “retard,” and I’m certainly not defending them. I hate them. Viscerally. Every time I hear them, it feels like a punch in the gut. And I will continue to take a stand against the use of these words as insults and slurs and descriptors of things people think are foolish or defective. But what I really want is for my son – and people of all kinds of differences – to be seen as a complex human being, with emotions, and abilities, and value, and a place in the world. Because I think if that can be accomplished, the slurs will disappear.