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: )

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
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.


  1. Replies
    1.'re welcome! We need your story too...we need to blanket the world and crush the one story that sill pervades. Thanks for taking the time to comment! :)

  2. So true, so true. The best we can do as parents (and teachers) is to help our children find their voice, and teach them to not be afraid to use it. I believe that is where the real beauty and progress will come from.

    1. Jennifer -- I so so agree...but it remains elusive for those whose children have no voice or can't share their story themselves. Like you, I think that is where the progress and change can come from...I pray it happens soon. Thanks for taking the time to comment! :)

  3. I love this Beth :) I also think there need to be MANY faces of DS and that the parents of the children who may not have their own voice need to be able to stand up and share their stories and that their stories are equally as important and valuable as the stories of the children who can independently voice theirs. I think sometimes those children/young adults/adults who are outwardly seen as "dumb" "clumsy" "unintelligent" have equally as much to give to the world, but because they don't have a voice, they are ignored, even shunned, in the disability community because they aren't considered to "positively reflect" what the particular disability is. I think that is wrong - there is beauty in diversity and these individuals have people who love them and see their strengths, their intelligence, their beauty, and may have to be their voice - but feel isolated and don't share because of things others have said. I hope everyone can share their story and that every individual can be valued for who they are :) Because - the more we share - the more people will understand :) I loved all the videos and stories that I could share yesterday - and I know there were people out there who watched and read and hopefully learned :) Thanks for your beautiful thoughts - I always love them :)

    1. YES!! I couldn't agree more..."There is beauty in diversity" is for sure one of the many graces I have learned from Patrick. In fact, I am more patient with those that need some detective work to see what they are saying or some mining for the message. I know there is treasure there! But often, those are the very people who only have one story told on their behalf...we need to help them share their story and/or have the real people who know share the stories they see day in and day out. Share your story! We need to blanket the world and crush the one story that is Down Syndrome.

  4. Again, I love your thoughts. I love your story. I love you guys!

    1. Awww Julie....thanks for taking the time to comment! LOVE you right back! :)