Showing posts with label A Bridge. Show all posts
Showing posts with label A Bridge. Show all posts

Friday, March 21, 2014

Regaining Paradise



Today is World Down Syndrome Day!
Yes, every March 21st, the world who knows about Down Syndrome goes crazy.
Cupcakes are made.
Colorful socks are worn.
Blue and yellow come out.
Lots of cool videos fill up Facebook's newsfeed for people who care about it.

Mostly, it's a chance to tell a story.

Mary Kate came home from college today.
She was sharing her new favorite music and within one of the songs was a cut to a TED talk.*
*(One of my favorite ways to "waste time" on the internet -- amazing people sharing their passion, their intelligence and their experience in video format.)

She stopped and found the TED talk and told me to watch it.
She said that her writing teacher had taken the time to show it to her class.

  Here it is.
It's called The Danger of a Single Story.
The speaker is Chimamanda Ngozi Adichie, a successful writer 
born in Nigeria and now living in the US.
I urge you to watch it.

(For some reason, the video doesn't seem to work with Iphones, here's a link to it:  http://www.ted.com/talks/chimamanda_adichie_the_danger_of_a_single_story )

Chimamanda speaks eloquently and passionately about the danger (and oppression) of knowing only a single story about a people, a culture, a race, a country.

She reminds us that this is truly a message of power.
Those with the power tell the one and only story.
Underrepresented groups, disadvantaged people, countries without electricity or clean water have other people tell their stories.
They tell them one way.

As I sat there, I began realizing that this was the problem for people with Down Syndrome too.

The people with the power have told the one story over and over again and it goes something like this:

You are dumb.
You are cute.
You are a burden.
You need help.
You are clumsy and awkward and ugly and disabled.

We have Chris Burke from Life Goes On or Becky from Glee.
That's it for people with Down Syndrome in the media.
Someone in power told those stories too.

Here's my story:
Patrick and I can communicate by text insanely well.
He can find anything he wants on Google...scary good.
Patrick loves to dress up and feel handsome.
Patrick has dreams and plans for his future.
(They don't involve hanging out at home.in.any.way.)
Patrick reads, writes, prepares and dreams big....Broadway show big.
Patrick just figured out how to ride a bike at age 13.
He learned to swim well at age 11.
Skateboarding, surfing, windsailing are going to be difficult, difficult things to learn for him.
Physical coordination is hard won for him.
That doesn't mean he can't do it...just that it will be hard. (for me too, by the way)
Patrick takes out the garbage and makes his bed...on a good day...on a bad day, it doesn't happen.
Patrick is a 14 year old kid.
He really hates that he still has to listen to his parents.
I tell him to get in line...complain to his friends...all teen-agers hate it.
You're supposed to.

My dream is for Patrick to one day tell his story...and for Tommy and Hayden and Gretchen and the many, many others to stand up and tell theirs.

Chimamanda says: "Stories can break the dignity of a people but stories can also repair that broken dignity."

She ends with this powerful message:
"When we reject the single story, when we realize that there is never a single story about any place, 
we regain a kind of paradise."

I need you to tell your stories.
Go out there and regain paradise.
Our kids deserve it.
My dream:
to dismantle the need for World Down Syndrome Day.

Tell the stories...take back the power.
The world needs to know.

Thursday, March 6, 2014

No One Is Alone


"Sometimes people leave you halfway through the wood.
Others may deceive you.
You decide what's good.
You decide alone.
But no one is alone."
--Into The Woods

So tonight Patrick had to write down all of his various entries that would be placed under his name on his yearbook page.
He's in 8th grade in a K-8 school...the top of the heap.
It's the big time.

First he had to list his interests.
Basketball, swimming, drama, musicals, music, traveling and Broadway made the list.
He wanted to add that he was a "love expert" (his favorite phrase from the movie Frozen, other than "Let It Go" the Oscar award-winning theme song from it) but I told him that it would be vetoed by the yearbook editors.  
They're picky this year.

Next, he had to list people he most admired:
Sarah, Steve, Ashley, mom and dad. Jack, Mary Kate, Caroline and Miah.
First off, can we chat?  Are John and I a two-for-one deal??
Are we not separate entities?
Not in Patrick's mind on this day or so it seems.
Miah's name made me smile...Miah placed Patrick in her list of people she admired in last year's yearbook.  I forgot that kindness but Patrick did not.

Finally, we had to think of an inspirational quote.
We started talking about favorite lines from movies and plays.
He was really pulling for one of the many funny lines from Frozen by Olaf the snowman but I told him those yearbook editors wouldn't go for it.
So he turned to his old stand by, perhaps his favorite Broadway play of all, Into the Woods.

Just like that, it appeared.
Like a comic strip speech bubble above his head:
"No one is alone."

As soon as he said it, he knew that was it.
He tumbled and tossed some others around:
"Opportunity is not a lengthy visitor." being a solid number 2.
But he just kept coming back to the fav.

No one is alone.
Truly, no one is alone.

This child of mine, so divinely placed, just knows how to get to the heart of what matters.

I cried in the days after Patrick's birth, believing, however erroneously, that I would never make another friend...that Patrick was my barrier, my wall, my fortress.

Honestly, I couldn't have been more 100% wrong.

I would laugh at the old me...right out loud in an exuberant way...knowing the life I have right now...so full to the brim with new amazing, heroic, inspirational people that have crossed my path all because of Patrick...if I didn't cringe at the sheer number of abortions caused by that same fear and prejudice.

I want you to know..no matter how afraid you are...no matter how unsure...no matter what is going down in this difficult journey we call Life...that Patrick speaks the truth.

No one is alone.

You may feel isolated.
You may feel like a freak.
You may feel unlovable, unknowable, unforgiven but that is just the story you tell.

As they say so wisely in Into the Woods:
(and perhaps this is my favorite quote)
Careful the tale you tell,
that is the spell.
Children will listen.

So tonight, another sprinkle of glitter came my way on my path of Life.
More sparkle...more light...more love.
Once again, I thank my teacher...
or should I call him my bridge, my crossing, my light at the end of the tunnel.
Whatever the metaphor, in this month of celebrating people with Down Syndrome, 
tonight I am profoundly grateful for my front row seat.