People First Language

One of the things that I became aware of early on in having a child with Down Syndrome is the need to emphasize, or encourage using, what is called "people first" language.

Before my daughter was born, I'm sure I was often guilty of not using people first language when talking about others with disabilities. I still hear people say things like, "Look at that Downs girl.", or "There's an autistic boy in my class at school." Phrasing things this way communicates that it is the disability that is seen first, and that their disability is the main thing that defines them as a person. But we don't do this with others. We don't refer to someone as a "diabetic employee", or a "cancerous patient".

I want people to know that my daughter is first and foremost a human being. She is a daughter, a sister, a friend. She is more like her siblings, who don't have Down Syndrome, in many ways than she is like other kids that do have Down Syndrome. That one extra chromosome may affect her whole being, but the other 46 still have the lion's share in determining who she is as a person.

So, when I can, I encourage people to phrase things like, "that girl who has Down Syndrome", or "the boy in my class who has autism". It's seeing the person first, the disability second. And I think that small difference in wording has a profound impact on our attitudes, and how we will ultimately see, and treat, those around us.

Special Olympics

Yesterday our daughter, Erin, participated in the annual Special Olympics for high school students here in London. This was an exciting day for her. Her events were the 80 meter sprint, long jump, high jump, shot put, and softball throw. The high school she attends had volunteer peer coaches, two for each participant. We were thankful for cool, overcast weather (a little too cool at times), making it easier for the athletes. Although Erin didn't place in the top 3 in any of her events, she had a great day nonetheless, living out the Special Olympics creed, "Please let me win, but if I can not, let me be brave in the attempt."

The class and helpers from Oakridge Secondary School

Erin with her peer coaches

In the long jump

Softball throw

With her teacher, Andrew M.

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.)

Welcome...

So, I've just started a blog on a topic that I've been living for the past 17 plus years - raising a child and experiencing life with a daughter who has Down Syndrome. Although I've posted items about this topic over the years in other forums (my Taiwan Life blog, Facebook, etc.), I felt I wanted to post in a more focused way about my thoughts, experiences, and feelings about having a child with DS. I will also try to highlight a broad range of topics related to Down Syndrome, sharing third party resources or articles I find of interest. My goal is to educate, challenge, and generally open my heart on the matter. Every post will in some way be related to Down Syndrome, or raising an exceptional child.

As for the title of my blog, "The Deal With Downs", it has a double meaning for me. Dictionary definitions of the word "deal" include, 1) managing, coping, or taking measures regarding something, 2) distributing something to someone, or including them in something (i.e. "deal them in"), and so I could say, when it comes to Down Syndrome (or "Downs", as many say), we deal with the hand we were dealt. (Too corny?)

I've said it before, and I'll say it again, Down Syndrome is something most people have heard of, but unless their lives have been touched by it in some way, they often know little about it. If I can change that in some way through this blog, I'll be happy.

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