My heart is so heavy today.
Discouraged.
Worn down.
Feeling like I was scaling a mountain and I fell...way, way down...and I'm stuck.
I recently listened to this podcast about expectations.
It is amazing and terrifying and profound.
It tells the story of a man who lost his eyes to cancer before he turned two...both eyeballs removed.
Completely blind.
Only, not really.
Because, like all two year olds, he adjusted.
He intuitively started clicking and making noises to echo-locate in his world...just like bats.
He got so good at it that he uses a cane as a very minimal guide often just holding it up by his side.
Yes, no lie.
This blind man, rides a bike on his own by clicking as he goes.
He maneuvers through his world, very capably.
He has his freedom...
but because this is so rare for blind people, he goes around the world explaining how it can be done.
Proving all of us who don't know any better, wrong.
So, all of us, with our über compassionate hearts who want to reach out and hold a blind person by the elbow and guide him along, take it all down a notch right now.
It's not necessary.
What does Daniel Kish need from us?
Opportunity.
An open mind.
Equality.
To be seen.
*****
I have a son with Down Syndrome.
His name is Patrick.
He is 15 years old -- capable and reliable and smart.
He's someone who always knows where his cell phone is -- much better than me in that regard --
and charges it up faithfully.
Patrick, as you may know, loves theater and Shakespeare and being in plays. He's been in over twenty performances of all kinds. He memorizes scripts; writes his own scripts; plans cast lists and eagerly awaits the latest soundtrack from his latest Broadway favorite.
I know that's not the message that most of the world gets when you find out about
Down Syndrome...but it's the truth.
Yes, he needs to be supported in his learning.
But in his living?
He is fine. Thank you very much.
He just needs to be seen.
He needs to be given opportunities and support.
But isn't that what we all need?
Tonight was the play that Patrick has been preparing for since early November.
He didn't get a part so he was allowed to do tech.
He was excited to be in charge of a spotlight.
The only problem was...he wasn't in charge of a spotlight.
He was in charge of following along in the script and cueing the student who was using the spotlight.
Ummm...that's not a job.
We all know that the student doing the spotlight knew the cues and needed no reminding.
I am cringing thinking of Patrick taking this job so very seriously, offering the cues, while the student who was doing the spotlight just played along.
That job which was no job sent a devastating message of incompetence and unreliability to every single student performing in the play...and every audience member...and every faculty member.
That message isn't one of inclusion.
It's one of exclusion.
A message of being set aside.
A message of:
you're only good enough to breathe the same air...not actually work on the same play.
Ironically, the play is called Metamophoses.
So much change and growth could have happened.
Should have happened.
But people who had very good eyesight turned out to be unable to see. Blind to the opportunity.
People with very big hearts and genuine concern for students tried to be nice.
But nice isn't nice.
Reinforcing stereotypes is never nice.
Lowering your expectations is not compassionate.
The result of these good intentions: people in the margins stay right there.
*****
I don't know how you help someone to see.
How you change a perception.
All I can do is show up with my kid and hope for the best at every opportunity.
He knows what to do.
He just needs a chance...
a chance to be seen.
God bless Patrick.
Who took his job that wasn't a job and did his level best.
That's all you can ask of your child.
But I can ask the world to do better.
I can ask the world to blink.
Rub your eyes.
Pause for one minute and contemplate who you are not seeing.
Who do you overlook -- even with good intentions?
Who sits on the margins of your world?
Can you expand your view of the horizon a little bit more?
Who can you reach out to and lift up?
World, open your eyes.
You are missing out.
******
*UPDATE*
Sometimes, very rarely, things tie up with a bow.
They circle around and make sense.
This is one of those times.
After an early morning email to the director with many of these same thoughts enclosed,
the director, kindly, thoughtfully, responded with his eyes wide open.
He had a second chance and he used it.
Tonight, the last night of the play, Patrick worked the spotlight.
Someone else read the script.
He stood on a cafeteria table...
"it gave me balance" he delightfully noted,
and used the pink or blue lens and shone that spotlight right where it needed to go.
He did it.
Awareness + second chances = opportunity
I'm grateful for a director who was willing to think about it.
Grateful for kindess.
Grateful for grace in the ordinary.
All my heart can say is thank you.
