What To Call It

After my introductory post, including an explanation of why I chose the blog title, it may seem inconsistent for me to admit that I have never really liked the term "Down Syndrome", or its abbreviated form, "Downs". Besides the fact that the word "syndrome" typically conveys something mysterious, unnatural, even sinister, I have in fact always cringed at the term "Down", which by its own expression communicates mental images of "lesser", "lower", "sub-standard", or "inferior". Thus, to me, the coupling of these two words to describe a condition my daughter was conceived and born with gives a one-two punch in the labelling department. I have at times heard people use the phrase, "What's the matter with you? Are you Downs?!" as a derogatory put down. Yes, down. There it is again.

A Bit of History

John Langdon Down

OK, pop quiz: How many of you, without having googled it, knew that the "Down" in Down Syndrome is attributed to the name of the British physician, John Langdon Down, who, in 1866, first officially diagnosed and characterized the symptoms of the condition? Be honest. So, here we have the condition, quite reasonably, named after the doctor that first did an organized study of it. I can see that. I shouldn't be upset or blame Johnny that his last name was Down. That's not his fault. But again, I have to be honest that I just have not been comfortable with the label, as to me it conveys something negative. But do I have anything to suggest as an alternative? Well, yes. Read on....

Jérôme Lejeune
Copyright 2009 – Imagine Foundation
All rights reserved

Staying along historical lines, let's fast forward 93 years from the time dear Mr. Down first described the condition two Centuries ago.

In 1959, the scientific discovery was made by one Jérôme Lejeune, that the condition identified and referred to as Down Syndrome since 1866, was in fact caused by a mutation in which an extra piece of genetic material attached itself at conception to the 21st pair of chromosomes, thus giving it the more medically accurate description of Trisomy 21.

Now, I learned all this even before my daughter was born. Having been given the news during the pregnancy (as a result of unrelated testing) of this abnormality that would effect her whole being, I spent the time awaiting her arrival into the world by reading as much about Down Syndrome as I could. And so from early on I secretly began to wonder if I could somehow challenge the world's common acceptance and usage of the label "Down Syndrome", exchanging it for the more technically accurate, (and perhaps more socially acceptable term - at least in my mind), Trisomy 21. Over the years I frequently had intentions of introducing my daughter to strangers saying, "This is Erin. She has Trisomy 21.", and failing the registering of any expression on their faces, I would go on to explain what I've just shared with you. More often than not, however, I just came right out and said, "She has Down Syndrome". It was quicker, easier, and they knew immediately what that meant. At least I hoped they did.

There is one other way that was common for people of generations past to refer to people born with Trisomy 21. I will not repeat the full "M" word here, out of respect for the ethnic race it sought to draw the comparison with, and with hopes that this word's usage will die out forever. I can only hope that the "R" word will soon follow suit. In my experience, there seems to be a disproportionate number of Americans over Canadians (or other countries in the world) that tend to throw this word out quite freely, sometimes disparagingly, sometimes in jest (I'm not picking on Americans; just making the observation). I would hope, however, that whoever uses that word, in whatever context, that they would know what an emotionally loaded word that is, and how it can really cut and hurt.

So, what to call it? I can can think of a few phrases that I believe it should never be called, one that I would prefer it to be called, and one that is most popular both within family circles of people with DS, and those without. Just remember that labels have meaning, and those meanings can either harm, or help.

(Stay tuned for an upcoming post about "people-first" language.)