Monday, March 31, 2014


...“Many years ago, I was at a national conference on biogenetics.  It wasn’t purely a scientific conference; it was open to the public.  The idea was that people from all walks of life – intelligent, thoughtful people – would discuss our dreams about what this technology might do for us.  There were panel discussions on the eradication of MS, and Parkinson’s, and Lou Gehrig’s disease, and on and on.  We’d identify the genetic flaws, and no one would suffer from them again.

It was tremendously exciting, because there was a feeling that we really would have the potential to eradicate all human suffering from the earth.  There was a feeling of almost being godlike.  It was electrifying, Mr. Samuels.

I was as exhilarated as anyone.  But then, on the last day of the conference, a young man stood up in the audience.  We had all been listening to a speech about how prenatal testing was showing promising signs of making it possible to eliminate Down Syndrome.  And... “ Dr. Fukuyama leans across the desk, her eyes intent on mind. “Mr. Samuels, the young man who stood up int he audience to talk had Down Syndrome himself.  He was the head of a self-advocacy group of adults with down syndrome.”

I nod.

“We were all a little taken aback,” says Dr. fukuyama. “But this young man stood up, Mr. Samuels, and he said the following.  I have never forgotten it.”

“’I don’t understand.  We don’t make any trouble.  We don’t steal things or kill people.  We don’t take the good jobs.  Why do you want to kill us?’”

For a few secons I cannot breathe.  I stare at Dr. Fukuyama.  She stares back at me.  Then she smiles, a little sadly.  “That moment changed everything for me.  My excitement disappeared.  I got a glimpse of the world we really might create, with our high-flying ideas about the eradication of suffering.  A world in which so many people are found lacking.  Are considered unfit even to be born.”

- “Double Helix” by Nancy Werlin

The preceding is an excerpt from a young adult novel I just finished reading... and it stopped me in my tracks. If you have a child with down syndrome, or maybe another disability, then you know this world all too much.

Ive heard several parents of children with down syndrome asked if they could would they take away the down syndrome.... and almost all of them say "no, its part of what makes their child who they are".... maybe this is callous, but if I could, I would absolutely take away Wallace's down syndrome - not for me (ok, maybe a little bit b/c it would be nice to know what he is thinking sometimes), but more for Wallace - Wallace has his own personality that he would absolutely retain with or without the down syndrome, but it would make Wallace's life easier and more open and I would love to give him all the opportunities that my other kids would have - I would love for Wallace to be able to speak and tell us what he wants, or why he did something... to be able to stand up for himself when another kid says "wallace did it" and he cant protest even though he did nothing wrong... that he wouldnt be so misunderstood...  but if we couldnt have Wallace without the down syndrome, we definitely would still take him with it... :)

Did you know that 92% of babies that have down syndrome are purposefully aborted?  Im not going to judge anyone for their decisions - goodness knows, I can test that parenting alone is hard, but parenting a child with special needs is really hard some days - its also really, really good some days too (and no, we are not saints - if it was your kid going through something, then you do what you gotta do, thats just parenting).... but I hate that as society we equate down syndrome with being stupid or worthless... believe me, Wallace is seriously not stupid or worthless.... he is very smart and very good at getting what he wants and reading people... but it aches my heart that people can look at him and think its ok to treat people like him like they arent even human.... still as a society, we are using the word "retard" as if thats ok... its not.... even if you "dont mean it that way" - if you really dont, then find another word, how is that so hard?

I think weve come a LONG way in becoming more accepting of people who are different, but I also still think we have a LONG way to go.... my mama-bear insticts want to fight, but I know that isnt always the best way.... I just want to do what I can.

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