Sunday, January 20, 2013

Down Syndrome Uprising –

I am not a “Mommy Blogger”. I write social commentary. I liken myself to a modern day Erma Bombeck – except we rent and no one knows who I am. And, oh, yea, we have a kid who happens to have Down syndrome, And, we are totally cool with that.
I have been writing about our family since April of 2010. My intention has always been to honor who our son is (not who he isn’t) and whenever possible to bust my husband’s balls. 
Lately, though I have come to realize I also need to write about this anger that rises up inside me when it comes to how our world treats people with Down syndrome.
I have created a FaceBook initiative, “Down Syndrome Uprising”. The intent of this page is to facilitate a dialogue about what we can do to elevate the understanding of people with Down syndrome. This page is not just for parents of children with Down syndrome. It is for anyone who believes the acceptance of all human beings is essential.
If is Erma Bombeck-like observations on what is “typical” or “normal” then Down Syndrome Uprising is Angela Davis-like benevolent militancy.
My initial title for the FB page had been a reprise of Milton Glaser’s iconic re-brand of New York City offering the simplicity of I LOVE NY except with a Sarah Silverman Twist – ‘I Fucking Love People With Down Syndrome’.
My friend Dawn, a therapist/coach/teacher, told me “As much as I love you I don’t want the word “fucking” on my FB feed. What about “Effing”?” Dawn is if anything practical.
But, back to me loving Down syndrome. To me loving what is. Not what isn’t.
I grew up in Wisconsin. I come from Norwegian-stock. We have long limbs, strong bones, an enthusiasm that doesn’t really have good boundaries and an acceptance of ‘what is’.
To give you an example my mother received the diagnosis of breast cancer three years ago and had a mastectomy. She describes it this way, “I’m lucky I had the good kind of breast cancer.”
OK, I’ll bite, “What’s the good kind, Mom?”
The kind where you don’t die.”
So, believe me when I tell you “I love my son’s Down syndrome”. Not loving it means not loving part of who he is.
Unfortunately not everyone is from Wisconsin so I find most people hate Down syndrome.
In fact we have historically hated Down syndrome and people with it. From the 1700′s to the 1970′s we alternately starved them to death, placed them in insane asylums and otherwise institutionalized them. By the 1980′s we were just refusing them medical treatment – like food and heart surgeries -that resulted in a life expectancy of about 25 years of age.
Then in some sort of crazy Darwinian-time-folding-in-on-it-self-way when we realized with DE-institutionalization, proper medical attention and appropriate services they could not just survive in our cold little world they could succeed. With the cruelest of irony this discovery came at about the same time as another – genetic testing advanced to the degree we could identify Ds prenatally. Since then we have been aborting over 90% of them.
Eliminating them from the face of the earth is portrayed as a good thing. Like, “Thank goodness we can test for it and get rid of it.” This was literally being said, by the Surgeon General of the United States back when Hillary’s husband was becoming a cigar aficionado.
And yet, ask a mother or father of a child with Down syndrome how they feel about their child. Actually, ask anyone who knows a person with Down syndrome. And – most importantly, ask someone with Down syndrome how they feel about being wiped off the face of the earth.
People with Down syndrome have been done dirty by bad PR. If Ds had Phillip Morris’s – sorry, Altria’s – money, we could hire Don Draper. But we don’t and Don Draper doesn’t exist. It’s up to us.
Us is anyone of you that believe as I do we cannot abide a world that wants to rid the world of people with Down syndrome.
I don’t have all the answers. This merely my opening salvo. My ‘call to arms’.
I envision this page to be a place where we create an unfolding manifesto of acceptance and love for people with Down syndrome.
It is not a place to talk about what isn’t. Let us start from “Our world has people with Down syndrome – that’s a good thing”.
Uprising Ds style
Uprising Ds style.
Let us talk about what could be. How can we get others to love and accept people with Down syndrome?
The way forward?
I cannot do this alone. I invite you to join me on Down Syndrome Uprising.
Welcome to the revolution.

1 comment:

  1. my name is Michelle. I am mom to 3 beautiful kids, including 14 yr old Ciarra, who has DS. I have been fighting mad for SO long I can almost not believe i FINALLY found someone..anyone..who would actually...VENT...that anger with me. I was here in the early days, when all the DS groups were hemming and hawing about the abortion rate for DS, back when it was a terrible, awful thing that over 50% of our babies were being aborted...back when the nasal bone was the big identifier. Ive watched the world learn to systematically seek and DESTROY our children. And Ive seen a coming of age amongst DS parents...where it is almost scream and holler and get REALLY REALLY mad. But no one is willing to say the hard things out loud. I was a part of the earliest days of IDSC, in fact the founder tells me I inspired her to start it. But as much as I ADORE them and their message, I want more. I want forceful, meaningful ANGER. I want people to get as outraged as I am. I want people to get when I say I had to pull my beautiful child from school because of the bigotry and medical neglect and indifference...because of the pats on the head and the inability to TEACH her. I need to be here, to know Im not alone. I feel like I just found home.