Having to post daily at this time of year helps force me to think, consider, AND reconsider issues relating to Down syndrome as potential subjects for discussion.
Top of mind today is NDSAW! That's: National Down Syndrome Awareness Week! Happening across Canada November 1st to November 7th, 2013. During this time, I plan to continue my daily blogging, as I did last year, almost right up until Elyse's birth, to support our National DS Society and my Canadian heritage.
I am proud to share some information about NDSAW from the Canadian Down Syndrome Society (CDSS):
Canadian National Down Syndrome Awareness Week is an annual observance sponsored by the Canadian Down Syndrome Society, November 1-7
At this time we take the opportunity to highlight the unique strengths and abilities of fellow Canadians with Down syndrome
Now is the time to demonstrate to each other and the rest of the world that Canada is a nation of people committed to a Canada where ALL are welcome, we embrace diversity and we value everyone’s genes equally
About one person in 800 is born with Down syndrome. Each one is a person first and a person with Down syndrome second
Down syndrome presents challenges for a child, their parents, their family and professionals in the fields of health, education and social science. It is vital that these challenges be met to ensure equitable opportunities for individuals with Down syndrome
As Canadians, we celebrate our similarities, as well as our differences, knowing we are richer as a result!
I am particularly drawn to the third point, the letter 'N', that now is the time to demonstrate to each other and the world that Canada is a nation of people committed to a Canada where ALL are welcome, we embrace diversity and we value everyone's genes equally.
Not long ago, I remember Dan reading to me a headline about Denmark proudly announcing their goal to "become Down syndrome free!" by 2030, by offering free prenatal testing to all pregnant women, so they may abort a fetus with Down syndrome, of course. They boasted already being something like 90% Down syndrome free.
I am repulsed by the notion of 'cleansing' our species of individuals with Down syndrome. The very idea of 'preselecting' the 'normal' children to live and 'deselecting' the outliers to die drives me further into advocacy for human rights, further into humanity, and closer to the truth.
Where does it begin, and where does it end? Who came up with such a horrific idea as ending the lives of those with Down syndrome - Danish Hitler? I am not trying to be funny, as it is certainly not a topic of conversation I take lightly, but to me it is one that borders on the absurd and so it is hard for me not to ridicule such an inhumane mindset.
I am proud to live in a country where we strive to value everyone equally.
In thinking of NDSAW, I am also reminded of a very like-minded individual, should I flatter myself to make such a comparison, whom I discovered in reading his memoir, The Shape of the Eye: author Mr. George Estreich.
What I admire most about his memoir is not only his choice of words, written so beautifully, "with a poet's eye and gift of language" (Kim Edwards, Author of the Memory Keepers Daughter), but how he comes around to what is right and true through his own personal journey.with his daughter Laura who has Down syndrome.
At the end of a conference held in Canada (Go Canada!!!) that he attended in 2006, Estreich relays a story of how he watched a video of mice molecules that had Down syndrome, and in comparison, you could actually see them moving slower than their 'typical' mice counterparts.
He describes the close-up into the regular mouse's make-up as, "a cloud of molecules zipping healthily across the synapse...a clear dark sky and the shooting stars coming down, one after another."
Then he describes the clip of the mice with Down syndrome, "It was a different picture entirely. A few molecules, moving more slowly. They made their way across the screen like stars falling through maple syrup."
Though he's painting a grim picture, it gets seemingly worse sounding, until his revelation.
Estreich writes, "Then...I felt awful. When I'd gotten impatient with Laura, or the few times I'd lost it and yelled, I had been getting mad at something that, at the profoundest level, could not be helped. Her molecules were moving slower. But then, those were the days when my molecules were moving slower too."
He weaves his way through to finish his thoughts with a sentiment I share exactly, in principle:
"On my most hopeful days, on the days when my own molecules are up to speed, I think more people will come to share this perspective: that the diagnosis will be a footnote to individuality, and not the other way around; that stories of ordinary lives will come to replace the tragedies and fables still accepted as truth; and that Laura will live in a world where she seems as ordinary to others as she does to us."
I want to live in a world where people with Down syndrome seem as ordinary as the rest of us, because they are.
"Every life is equally beautiful." "We are so much more alike than any one of us is different." These are my words, and statements I whole-heartedly stand behind; the repercussions of which I will likely be thinking about, and advocating for, the rest of my life.
Do individuals with Down syndrome not smile, or laugh, or breathe in air like the rest of us? By what jurisdiction, other than society's fabricated norms, is a person with Down syndrome not like everybody else in their right to equality?
Dan and I had an interesting discussion last night after I received an email that described Down syndrome as "a medical condition requiring treatment."
Down syndrome is NOT a medical condition. Let me explain the difference. Elyse has Down syndrome. That is a part of who she is, but it does not define her. Elyse had duodenal atresia when she was born and needed surgery - that was a medical condition. Some of her friends had heart issues that needed to be repaired - those were medical conditions. BUT, simply being born with a different genetic arrangement is not "a medical condition", it simply is. Yes, there is a higher potential for an individual with Down syndrome to have a medical condition, but being who she is is no reason for Elyse to be 'medically treated'.
We do a great disservice to those with Down syndrome by viewing them as individuals with a medical condition. The medical condition has a way of taking over, until that is all that we see. When I look at Elyse, I see a perfectly happy and healthy baby girl, and her doctors would agree!
There are many who would disagree, but to them I would say: what purpose does it serve in labelling people as this or that? In our world of 'normal' standards, why must we always regress to the mean? When did 'different' become a medical condition anyway?
Yes, I want Elyse to fit into society, and be able to do the things that most kids can do - who wouldn't? I will 'treat' her with some therapy, if she needs it, and will help her strive to fit into 'the norm', if that is what makes her happy. I refuse, however, to put society's expectations over the well-being of my daughter. I accept her for who she is, as she does for me, as we all should do for each other.
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