Friday, October 5, 2012

AWARENESS Month Revealed

Happy Down Syndrome Awareness Month!

I have never felt so AWARE of Down syndrome.
But the "AWARENESS" thing is only telling half the story.

Storytime with Mama...

When Gabriel was born it was very difficult for us to go to our local support meetings in Orlando FL.
We literally would drive to the church/school where the meetings were held and sit in the parking lot watching as people with Down syndrome of all ages and their families walked inside. I would think about how I did not want to know these people in this way. I would also think about the fact that these same kids were not allowed to attend this private Christian school. I had never thought about this before.

And I cried.

And we would leave.
This happened over and over until finally one day we went inside.

And I cried.

But we stayed.
Amy asked to hold my baby.

And I cried.

Most people didn't ever ask. They were scared.
He was different. Fragile. Floppy.
Amy Van Bergen was my new Mentor Mom.
She made me know it was ok.
To cry
To love
To do this on my own terms.

The next meeting I went into a small group while someone else held my baby.

And I cried.

I heard a mother tell how her own mother wouldn't hold her granddaughter.
Her own mother said to her
"this is your middle aged curse"
These were words I had never heard before.
I put on my Angry Eyes.

And I cried.

But we have come so far the facilitator explained. It wasn't that long ago when children in America were institutionalized, given up by their parents.

 And I cried.

Later a woman walked by and asked,
"So where do I find the parents of the older ones?
You know when they aren't so cute anymore, 
how the hell do we deal with that?"
Now I was really mad.
I wanted to trip her. 
To spit in her face and tell her she wasn't cute anymore.
I wanted to find her child and rescue him.

And I cried.

I was slowly becoming AWARE
This was my club.
My diverse club.

Down syndrome does not discriminate.
Even though it is discriminated against even within our club.

People love to talk about how far we have come. It is our AWARENESS Message. The one thing we feel we can freely say to a new mom. 
We have come so far in other words means , 
be appreciative of what you can get. 
Submit to this AWARENESS.

We ingrain this into every new parents psyche. 
Year after year. 
The same AWARENESS Message.

You know what?
The only people I really want to hear this from are the ones who made the trek.
It is actually sad to me when I hear a new mom say it wasn't that long ago when parents were told to institutionalize their baby.

She has gotten the AWARENESS Message. She is already submitting to this new AWARENESS.

I feel a sense of obligation to just listen to new moms. Not talk to much.
Just listen. Just let them join the club on their own terms, like Amy did for me.
Protect them from the reality, the politics of Ds. Am I doing them a favor, listening to them tell me how far we have come? How fortunate we are.

When I really  want to say. "It was 50 years ago!!!!" 

The parents then were trailblazers. For 50 years they have been blazing trails and still are. These are the people I admire, I want to emulate. They didn't give up, give in, be polite, play politics. They did what was right. 

But now we need to pave those roads and widen the lanes.
It is way overdue.
We need to update our History Books. 
We need to get off the dirt road and turn it into a freeway. An interstate. We need to stop feeling as if we are grateful for what is our God given, law protected equal right. 

We need to update our vision. 
The same school where the meetings were held when my son was a baby 16 years ago still doesn't accept people with Ds. 16 years is a long time.

People still say absurd things like a baby with Ds is a punishment for something. Mom's still speak of their child with Ds as something to deal with.

In October our AWARENESS efforts are plastering the walls of social media with beautiful, adorable, accomplished human beings with Down syndrome. I smile every time a new picture is shown. 
I don't read the sappy quotes but that is me.
I hate sappy quotes. 
Get me a Shoebox card over a Between You and Me card any day.

But for all our sappy quotes we have also sat quietly, 
always grateful of course,
while parent after parent trudge the same path of AWARENESS. 
Fighting for inclusion, fighting for independence and equal rights. 
Counting their blessings their child isn't in an institution. 
Counting their good fortune. In 50 years this is how far we have come? Bowing in gratitude and submission to our own AWARENESS Message.

In this past year alone these are just some things I was made AWARE of:
NIH cut funding for research
Parents sue for birth of a daughter they would have aborted
Parents win lawsuit
Sequanom releases test to detect Ds earlier
Several movies and TV shows use the word Retarded or Mongoloid
Comedians continue to make jokes about people with Ds
Politicians and pundits continue to make jokes about people with Ds
Advocates use people with Ds for their own profit and personal agenda
A teen with Ds was shot
Another teen was not allowed to fly first class
A young girl's hair was cut off at school 
A boy was suspended for hugging
Hundreds of sites used photos of people with Ds illegally, maliciously
Thousands of negative comments on Twitter
All mocking and degrading people with Ds

And I cried.

"support us" 
"do something"

We naively assume the form letter that might possibly be written  by our support group will be enough because we are ever so grateful they are spreading our AWARENESS Message.  So we bow, so grateful.   We desperately and naively believe their letterhead is enough to make it stop, 
make it equal. 
And then we resolve to our AWARENESS Message. 
At least we aren't in an institution. We have come so far from those days. 

I am so AWARE of Ds right now. 
So AWARE of the politics of Ds right now.
I want to trip someone. I want to rescue my child from this AWARENESS. 

Because I am well AWARE that each time we allow a negative comment, a joke, a human rights violation, a poorly written article, a sappy photo of a child with wings or a cut in funding, each time we let this slide that 50 years turns into another and we hear new moms talk about how it wasn't that long ago.

And I cry.

Please join me in this Blog Hop.


  1. Thank you for reminding me just how far there is to go.

  2. Amazing. You need to get these ideas into your status updates for goofs who won't read more than a few sentences (or 140 characters) at a time :-). So very true...we aren't still saying we are grateful that women are allowed to vote, or that schools are no longer segregated by race. We are fighting to shatter a glass ceiling and stop racial profiling. New battles can't be waged if we keep thanking the oppressors for letting us have their crumbs after their meals.

  3. My first visit to your blog-way to preach it sister! I'll be stopping by again ;)

  4. yes, wow. You are so right! Thank you for the reminder!



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