Wednesday, January 18, 2017

That is me singing Newsies at the top of my lungs.

To be a member of this family means that you have a movie line and/or musical song to accompany any and every situation.

For example:

The night before my wedding I was singing "How do you solve a problem like Maria?" uncontrollably. I mean, it is after all what the nuns sang when Maria married Captain Von Trapp!

When it rains, we have an entire repertoire of songs we work our way through -- usually starting with "It's raining on prom night!" and ending with "If all of the raindrops were lemon drops and gum drops" with a healthy dose of Carpenters and "Singing in the Rain" thrown in!

And last week when a gentleman at indoor softball practice held up a piece of equipment and said "What does this do?" I couldn't resist saying "It makes you beautiful." (Truvy, "Steel Magnolias")

And y'all, I am not even scratching the surface here.

So keep that in mind as I tell you that we have been spending a lot of time listening to "Newsies", Little Red's soundtrack of choice for the ride to school. And every time I hear the song "Brooklyn's Here" I cry. I mean real tears, can't talk for a second cry. Even as I am swallowing deep so that I can sing along with Cate, I have been wondering why in the world the song is affecting me so strongly.

Today it hit me.

Do you know the story of "Newsies"? The young boys in New York at the turn of the century are outraged when the newspaper raises the rate for their bundle of papers to make more money. They revolt. And at first the rag tag bunch is just stirring things up and getting people hurt and thrown in jail....right up until the Newsies from all the surrounding boroughs show up in solidarity and support.

Just glance at the lyrics:

Newsies need our help today (Newsies need our help today)

Tell 'em, Brooklyn's on the way (Tell 'em, Brooklyn's on the way)
We're from (Brooklyn)
We are (newsies)
We are Brooklyn newsies
Just got word that our buddies is hurtin'
Facing total disaster for certain
That's our cue, boys, it's time to go slummin'
Hey Manhattan, the Calvary's comin'!
Have no fear (you know we've got your back from way back)
Brooklyn's here (we'll get your pay back and some payback)
We're the boys from the beaches of Brighton
Prospect Park and the navy yard pier
Strikes ain't fun, but they sure is exciting
Loud and clear - Brooklyn's here!
Borough what gave me birth
Friendliest place on earth
Pay us a visit, you'll see what we means
And when you do (when you do)
We'll kick you halfway to Queens
Now them soakers is in for a soakin'
What a sad way to end a career
They's a joke, but if they thinks we're jokin'
Loud and clear
Manhattan's here
Flushing's here
Richmond's here
Woodside's here
So's the Bronx (Bronx cheer)
Brooklyn's here
Loud and clear, we is here!

Brooklyn. Manhattan. Flushing. Richmond. Woodside. The Bronx. All those young boys came together to support their friends. They came to stand with them and fight. The story is beautiful and the show fantastic -- even the top-of-our-lungs-singing that happens in my van on a daily basis bears witness to the great music. But please don't miss this -- the best part for me is that when times got tough, those kids pulled together and fought the fight in solidarity.

I know. What in the world does this have to do with me?

Some days I feel like I have been fighting for almost 20 years for my boys to have the rights and opportunities afforded to able-bodied children in this country. I would attend IEP meetings with some dear teachers and principals who with one unhidden eye-roll could speak volumes about the effort that they felt providing an education to my boys cost.

This week as confirmation hearings for the new administration are held I have heard over and over again how challenging compliance for giving children like mine an equal education can be. I feel so sick listening.

As most of you know who have been with me here for long, we love Disney. Going to Walt Disney World or Disneyland has been a privilege that has allowed us to feel less different. More included. And we adore the memories we have made at both places.

But even there, I am fully aware of the eye-rolling going on as we enter a wheelchair loading zone and the line is held up momentarily. I am embarrassed to tell you that I work hard to keep our Fast Passes visible to all as we enter so that they can not judge us harshly. I am all but shouting, "We waited too, we played by the rules".

I see the disgust when the bus driver asks people to get up because he has to fold seats up for my boys. I try to apologize always and thank them repeatedly. I feel it is my job to entertain crying overtired children on the buses because I somehow need to pay for the "luxury" of taking those seats in order for my son and his wheelchair to have a spot on the bus.

But I always assume that those feelings are from my exhaustion -- that I am overtired and over thinking things. I assume that people are good and when they see my son having to drive onto the bus that their hearts are tender to him and they don't really mind that they have to give up the seats. I hope that it is my exhaustion. I pray that it is my exhaustion.

Sadly, today Wade was looking for the answer to a question on a Disney discussion group and found these two posts -- really he found this first one and felt a need to respond -- something he never does -- thinking his gently telling them about Benjamin would remind them to be compassionate.

Wade responded by telling them how much "ADA Compliance" meant to his Disney-loving son in a power wheelchair, the one for whom the ride has to pause briefly.

This was the reply to CP Dad, my husband.

Oh wow Vectrex and Barb, you just confirmed all my worst fears. 

In recent weeks I have had private messages, emails and texts sent from friends wanting me to know that they would stand with my family to defend the rights of the disabled if necessary. Friends that recognize we need to move forward with making this nation accessible -- not stand still or God-forbid move backwards.

And so, when those Newsies from Brooklyn show up and say "We are here. We have your back," I cry. I cry. Because so much of this journey has been isolating. So often it has been me on one side of the table and a grade of teachers and school administrators on the other. So often it has been me at doctor appointments and seating clinic visits trying to find the best orthotic to help Mason walk, to help Benjamin stand. So often, it has been Wade and I sitting across a table from each other searching for the right surgery, the right surgeon. When all our "experts" wanted to bow to Wade's expertise but that meant making the decision alone, himself, for our children.

So often the bus for the school field trip was inaccessible which meant Benjamin and I rode alone in the van while everyone else rode together.

So often we sit alone in the back of the theatre, the church, the movie because the best seats are elsewhere and no one wants the accessible seats -- or those near us.

So often. Alone.

In the Fall the elevator broke and Benjamin could not get to the theatre for opening night of the show he had served as Dramaturg.  After feeling like our efforts might be exhausted, I ran up the stairs to tell them it wasn't possible to get him there. The beautiful ticket coordinator looked at me and said, "The cast says they will not go on until Benjamin is in the theatre."

I cried.

My Benjamin was not alone. Those kids might as well have been signing "Brooklyn's Here" when we rolled in!

And so I will focus on those stories and will re-read my messages of solidarity. And will pray that those who would eye-roll and those who will post on discussion boards will be few. And I will pray that friends will come alongside us and say NO to the eye-rollers and REPRIMAND those bothered by Haunted Mansion pausing. I pray for friends who will throw their fists in the air and sing with me "Brooklyn's Here!"

Honestly, we should probably go on and learn the dance!

Carol - The Blessings Counter