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Friday, March 30, 2012

Naturally Occurring

On World Down Syndrome Day there was a live streaming webcast from the UN conference. I wasn't able to watch it at the time, but thanks to a link on Plus15's blog I'm able to catch up on what I missed. There were speakers from all over the world, including many self-advocates. I haven't had a chance to watch it all yet, but I am glad I caught the short speech of Rose Mordi, from Nigeria.

She opened her speech with this description of Down syndrome - "Down syndrome is a naturally occurring chromosome arrangement that has always been part of the human condition." (If you get the chance, listen to Rose's whole speech. It isn't that long and it is so very worth it. I think it is about 1.25 in to the video. Listen to her talk about what having Down syndrome is like in Nigeria. And how brave she was to start the Nigerian Down Syndrome Foundation 10 years ago at the risk of being ostracized.)

How awesome is that statement? How powerful? How beautiful? How much would society's perception of individuals with Down syndrome change if it was described that way?

It so eloquently and to-the-point summed up my thoughts and what I tried to convey in my post - Hope and Normalcy that I wrote almost 5 years ago. This is (part) of what I said in that post, "...maybe Down syndrome is a normal part of the genetic make-up, if it happens that often.

Maybe one day it will be just a part of the person, and not a defining sad moment at birth. Maybe labor and delivery rooms would sound like this,

"It's a boy! No hair, dark eyes, 46 chromosomes! Congratulations" or
"It's a girl! "Blond curly hair, blue eyes, and 47 chromosomes! Congratulations!"

This is the message George Estreich wrote about in his book The Shape of the Eye. He writes about the history of Down syndrome as it was first described by John Langdon Down and how his descriptions - especially basing it on just one boy in particular to describe a whole population of people - and how his descriptors shaped how society views people with Down syndrome.

George also has a wonderful description of Down syndrome that echoes what Rose said, that echos what I wrote in my post of 5 years ago and that is ...the children existed before they were discovered; what changed, after Down, was the way they were known....even though we have rejected the name he chose (originally Mongolian idiots), the terms of his description are still with us." 

I wrote about the Perks of Down Syndrome as a mostly tongue-in-cheek post. But there are some truths there; especially how Down syndrome is described in medical books, taught in medical school, how doctors and geneticists describe it to parents. Parents are given a long list of negative descriptors about their baby.

Down syndrome is described as an abnormality, a disorder ... yet how different would we view it if it was just described as Rose said? That it is indeed a naturally occurring chromosome arrangement that has always been part of the human condition.

What if we started to refer to Down syndrome in this way? What if doctors were to use this descriptor?  There might be a slow, subtle change with the perceptions of society, but it just might happen. It might not happen in my time, but the change can start now in my time. And maybe, just maybe, in the future, those with Down syndrome will be welcomed in to this world with open, loving arms. But even more, they will be accepted without question of having an 'extra' chromosome.

I write this post as I sit outside in our back patio watching my 47-chromosomed daughter playing with my 46-chromosomed son and what could be more normal than that?

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Leah said...

What a lovely thing to think about on this Friday evening. Thank you for posting these thoughts. I would love to hear these descriptions used. Wouldn't that be great?

lisa said...

I usually buy the posters from "Disability is Natural" to put in my classroom, but didn't this year because I am sharing my classroom, but his posting reminded me of them. I may have to buy another set. I love looking at pictures of your children and reading about the love they have for one another. You are an amazing Mother!

Anonymous said...

I'm believing more and more that those of us with 46 chromosomes are the unfortunate ones. I love my 46 chromosomed kids, but man, my little guy who's rocking a little something extra just melts me.

So glad to be following your blog. <3

Go Trojans! :0)


Cindy said...

Such a great post. I like the idea of starting to change the way doctors describe people who have Down Syndrome; change the way they are perceived. They really were here before Dr Down 'described' them!

the mommy psychologist said...

The opening statement by Mordi is by far the absolute most wonderful explanation of Down Syndrome I have ever heard! Love it!!!!!! How amazing would it be if this is the way in which we began to speak?

lovemy3 said...

I wish everyone would explain it this way....this is perfect!

Anonymous said...

So what if it is naturally occurring, arsenic is naturally occurring.

Mom24 said...

Anonymous is a sad, hateful coward. How awful must it be to live life through those lenses. Pitiful.