Sixty Years Later...

God, I love this man...who uses intercourse and injustice in the same quote and rocks it like no other? MLK.

Here's a trick question:

Do you know what Supreme Court decision was remembered yesterday?

Have you ever heard of Brown vs. The Board of Education?

1954 is when it all went down.

Sixty years later we are still talking about it and yes, still celebrating the decision.

Sixty years ago segregation got the boot.

Sixty years ago.

Sixty years ago a grandson of a slave, Thurgood Marshall, stood in front of the United States Supreme Court and argued against allowing segregation in schools to continue.

The Supreme Court unanimously agreed.

--> SEPARATE BUT EQUAL HAS NO PLACE! <--

Do you hear that?? It has no place.

Sorry to yell but this is something that educators are still talking about.

And I wanna know why.

Sixty.freaking.years.

Today, of course, thanks to Thurgood, it is taboo to suggest that a child of color should be removed to a separate learning area just because of the color of his skin.

But that doesn't stop the system from having an overabundance of children of color identified as needing special education services and then removing them from the classroom that way.

Segregation is alive and well and yes, educators, very well-intentioned ones, try to use the whole separate but equal idea in a subtle way.

They say things like:

Your child will receive special services in the separate classroom.

We can meet your child's needs better in a smaller classroom.

The "educational gap" is too big and your child needs to go to a different classroom.

It's all crap.

SIXTY years ago it was decided.

We all get to learn alongside each other.

Everyone.

In the same classroom.

I sure wish schools would get the memo.

No special room.

No special class.

Nothing special...just the regular class.

That's all we want.

All our kids need.

We have thirty years of educational research that support the sixty year old decision.

We know what works.

Separate classrooms don't.

Engagement, technology, teaching with supports, visual aids, music, clear, specific feedback

these are the things that matter.

It really isn't hard.

We just need access.

Sadly, people with intellectual disabilities get denied access to their neighborhood classrooms all the time. 

Still, 60 years later.

So I'm writing this as a message in a bottle.

Thurgood went to battle.

He had the strength of the Constitution and common sense on his side.

He won -- unanimously -- 60 years ago.

If he can win,

so can we.

Fight the system.

Demand to have your child placed alongside his typical peers.

Don't back down.

Share the stories of success.

Follow the ripple of inclusion.

Watch your child grow and thrive.

If he doesn't.

Don't give up.

Tweak and adjust.

Believe.

It can happen. Successfully.

The Supreme Court is on our side.

Federal Law is on our side.

We are on the side of love, acceptance, tolerance and inclusion.

That's the side that matters.

Be their voice.

Speak truth to power.

Watch with wonder as miracles happen.

That's the grace-in-the-ordinary...it's right in front of us.

Thanks to Thurgood.

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.

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.

Dear 8th Graders

Dear 8th Graders,

Way back in the fall of 2005, you entered kindergarten and a little experiment was going on.

You had a student in your class with an extra chromosome, otherwise known as Down Syndrome.

No one came out and told you about this student and you just accepted him the way you accepted all of the other children in your class.

He couldn't run as fast as you could.

He couldn't write as well as you could.

He couldn't speak clearly.

And yet, he was part of you.

You figured it out.

You naturally, without any adult intervention, knew that this guy needed some support.  

You let him use a different kind of basket when you played two on two basketball.

You threw the ball a bit differently so that he could catch it more often.

You walked a little slower to be by his side.

You accepted him.

Did you know you had a choice?

Not really...because we tricked you.

We just put him in your kindergarten class --

where kindergarteners just want to have fun.

*****

When Patrick was born, as soon as he was born, the doctor whisked him away, checked him all over and brought him back to us a few hours later with a new label:

 Down Syndrome.

The doctor closed the door.

He put a sign on the door telling others not to visit us.

He didn't even let Jack or Mary Kate come in to see their little brother.

He thought this label would take some getting used to.  

He thought we would be crying and scared.

He wanted us to have time.

He was coming from a good place...trying to be kind...but in truth, he was being cruel.

You know why??

He never went to school alongside someone who had this label.

He was afraid of it.

He didn't understand it.

He thought it was worth grieving.

Patrick did not get a celebration in those first hours of his birth.

No joy.

No laughing and photo-ops.

A whole lot of serious.

Can you imagine?

Probably the one person who is as joy-filled as could be and that was his welcome.

Maybe that's why he celebrates birthdays, all birthdays, in the biggest way possible now.

What was it like when you were born?

Oh, how your family celebrated!

How loved and awaited you were.

*****

So here we are nine years after beginning the experiment.

1,520 days you've been together.

Only 100 left until graduation.

I can't thank you enough for your acceptance.

Your grace.

Your friendship and kindness...

you know why?

Because you weren't nice out of pity or because morally you thought you should or because you were trying to be nice or even because your parents told you to be nice.

You were accepting because you had the chance to get to know someone before you knew his label.

Best of all, Patrick had this chance.

That was our dearest hope for Patrick...

at St. James he could be Jack and Mary Kate's little brother.  

He didn't have to be "Patrick with Down Syndrome".

He got to just be Patrick.

If only you could know how profound that gift is.

Everywhere else, and I mean everywhere else, he is "Patrick with Down Syndrome".

Here, in this little school of 300, he is label-less.

It's grace in the ordinary.every.single.day.

Did you know that Patrick will be the first person with Down Syndrome to graduate from a Catholic school in our entire diocese???

He's the only person I know that has Down Syndrome and is on student council, anywhere.

Do you know that because of your acceptance and the way your class has shown the school and the bigger world how to be as people that you are changing the world?

For the better.

Do you know that still to this day principals and priests at other schools say no when a family that has a child with Down Syndrome asks to go to their parish school??

That craziness still happens.

Why?

Because that principal or that priest didn't go to school alongside of people with disabilities.

They're scared and ignorant.

They don't realize just how normal it is.

Someday you might be a principal.

Or a teacher.

Or a banker.

Or a parent.

I know that your kindness and awareness will be reflected in those jobs.

I can't wait to see what you do with your level of justice and equality and care.

I'm so excited about our future.

Because of you.

(And your parents, of course.)

Let's make the last 100 days the best yet.

Now you know the experiment.

You can tell your side of the story.

Share what you know.

Share your experiences.

Share with the world what equality and social justice looks like and feels like...

wait, it just feels normal....

like how it's supposed to be.

Exactly, my friends.

Never tolerate segregation or separation.

Anywhere.

You know the truth.

Together, we're better.

Truth or Dare

"The great enemy of the truth is very often not the lie, deliberate, contrived or dishonest, but the myth, persistent, persuasive and unrealistic."  

-- John F. Kennedy

Tell me the truth...

stop and really consider it.

How do you feel about Down Syndrome?

Does it gross you out?

Frighten you?

Disgust you?

Make you uncomfortable?

Why??

Time for a little truth telling.

I'm gonna keep it real and hope you last until the end.

Do you dare?

Down Syndrome is not frightening.

It's not the problem.

It most certainly does not warrant the death penalty or loss of life in utero.

The problem is the pervasive and concrete-like myths that persist.

Time for a little jack-hammering.

Myth #1:  "They are so happy."

Ummm....not so much.  Patrick has the full deli counter assortment of emotions: anger, loneliness, joy, confusion, sadness, happiness, calm serenity, extreme excitement, embarrassment, love.

Yes, what ticks him off is not what ticks you off...but isn't that true of your other friends and family?

He does not sit around in a perpetual dumb happiness every day -- in fact, that whole idea is just plain silly.

Myth #2: "They are stubborn."

People with Down Syndrome are under a microscope.  

Like it or not, they are held to higher standards behavior-wise than the typical population.

Imagine a line full of kids.

Imagine all of them pushing, poking, and acting unruly.

Who gets nailed almost every time??

Yep, the kid with DS.

He (or she) is easy to spot...I get it...but it's a bummer.

Being "stubborn" could also be called being persistent, having perseverance, demonstrating grit (the hip word in parenting if you haven't gotten the memo)...but almost always, in reference to children with Down Syndrome it is labeled "being stubborn".

I don't buy it.

Myth #3: "Children with Down Syndrome are a burden."

Honestly, this is the one that really prevents children with DS from living a full life.

Children (Down Syndrome or not) are NOT a burden.

Every single child on our big blue marble is a remarkable, stunning, one-of-a-kind gift to all of us.

They are gems...rare and beautiful.

How is that burdensome??

Is there more work involved with a child with Down Syndrome??

Yes.

Does that make it not worthwhile??

Don't you have to dig deep (and hard) for diamonds??

Aren't our kids more precious than diamonds??

If I could crush this myth into diamond dust I would...because this is the vortex of all prejudice.

If people consider you a burden, then you don't get equal access.

Heck, you don't really deserve to live.

If you are trouble, people avoid hanging out with you.

If you are difficult, well then, it's easy to leave you out, exclude you and close doors of opportunity.

Today, this very day, I spoke to two different moms about their children with Down Syndrome and their education.  Both of them are fighting for the chance to have their child fully included in the typical classroom.  One is in second grade, the other in fifth.  One lives in Florida, the other in California.

Honest, gut-level truth right now: their child is not the only struggling student in their class.

Their child could very well be a better reader and yes, a better student, than another child in that class.

Their child is the one singled out.

The one that needs to prove their worthiness to even get access to the regular room.

Why??

Because of the pervasive prejudice that continues to this very day.

Here's my truth and I've been a mom to someone with Down Syndrome for 14 years...

so, I'm not Polly-anna, crazy-in-love, rose-colored glasses girl...

just a mom who lives with her gem everyday.

This is my truth.

I don't notice Down Syndrome in my child.

I notice Patrick.

I can see him, his whole beautiful self, clearly.

That is the blessing of loving someone.

I don't believe any myths now about anybody.

Because the myths that people tell me about Down Syndrome are so far off the mark that it's offensive.

My heart got bigger when Patrick was born.

My citizenship with the world was not only renewed it caught fire.

I see myself in every mother...

the one who forgets her child in a car...

the one who doesn't have enough food in the fridge...

the one who can't figure out which end is up and is so clouded in judgement she believes not living is an option.

My truth is clear.

But I wonder about the others...

who will share their truth??

Who will dare to consciously, mindfully crush to dust these pervasive, destructive myths.

Only with truth can freedom ring.

Just a brother with two sisters: truth.