Showing posts with label Advocacy. Show all posts
Showing posts with label Advocacy. Show all posts

Saturday, February 13, 2016

Multiplication


I feel the heat of a social media frenzy.
It makes me cringe.
I feel embarrassed.
I completely sympathize with Cam Newton.

Why?

An email I wrote in a passionate moment to a school that denied my son entrance has been revealed.
My 20 year old daughter, sitting in her apartment in college was so disgusted 
she wanted to let it loose.
Like some message in a bottle, she shouted into Facebook, and shared her conflict and disappointment at the relative hypocrisy of a school that holds the motto, "Men For Others".

It seems that one of our sons is a Man.
Our other son, with Down Syndrome, is the Other.

I actually wasn't surprised by their decision.
I knew it would be a tough sell.
Before Patrick, my son with Down Syndrome, I fully admit that I would be the one not letting people in...not believing in the capability, the equality, the urgency of learning together.

I don't resent Jesuit.
I don't want to hate on them.
Or shame them.
Or even torment them.
Trust me, the heat they must be feeling from this social media blitz is more than they are used to...
and must feel uncomfortable.

Mary Kate's post on Facebook was not something I encouraged.
In fact, I actively discouraged it.
I wanted the whole process to stay private.
Like I was negotiating with a terrorist, I was afraid the pin might drop.

Jesuit had all the aces.
I was dependent upon them for even the slightest, tiniest welcome.
I knew it was a game I would most likely lose.
And it didn't feel good.

But Mary Kate was adamant.
She wanted to do this...
and when it happened, I just let it be.

Here is her post:
"This past week my brother was denied admission to Jesuit High School Sacramento. The high school my older brother attended. The high school my family has endorsed and supported over many years. Patrick was not denied because he was unqualified, but rather because he has Down Syndrome.

It's difficult to believe in a religion that is based on "treating everyone the way we would want to be treated"  and that "we are all made in the likeness and image of God"  when situations like this occur. But I refuse to be sad or mad about this. The only people who should feel sad are the administrators, teachers and students of Jesuit High School who will never get the opportunity and privilege of knowing Patrick, not only as a student but as a friend. 

My mother said it best in this beautifully crafted statement: "You can know that by not allowing Patrick into your school, you are continuing to marginalize a segment of the population that is already the most marginalized group in our country. You are perpetuating the myth that disability is such a hurdle that you cannot get over it. You are even contributing to the abortion rate -- because any student that knows Patrick knows that his is a life worth living and would not be able to condone abortion.  

I will continue to pray for all of the people, like you, in leadership positions to open their hearts and minds to students like Patrick. The educational research is irrefutable. The academic scores go up for all students -- the social emotional health of all students improves. It is worth every effort. And yet, we continue to be stymied.

Why?

Fear? the perception of the student being a burden? The pervasive prejudice that is allowed to continue in our country toward people with intellectual disabilities? 

In this Year of Mercy , all we can do is redouble our efforts and continue to work tirelessly on behalf of the least of our brothers. You can be assured that I will be doing just that." 


Siblings are virtually never heard.
When do they get to say their peace?

When do they get to acknowledge that they live in a world that sees disability as brokenness 
when their reality is the opposite experience.

Mary Kate sees Patrick as an equal...deserving of opportunities.
She understands that he will need support, 
but she doesn't think the two things are mutually exclusive.

Mary Kate posted on Facebook on Friday night.
24 hours later, her post has been shared close to 300 times.
Shared by strangers, friends and family.
Shared by groups that work for inclusion and families that dream of inclusion.
Shared over and over and over again.

********

When you have a child with a disability, you feel very alone.
Isolated.
Frightened.
Insecure.
Vulnerable.
You feel the weight of making every decision carefully and intentionally.
You cringe when you ask for an opportunity.
You hold your breath...and expect the no.

Sometimes you are surprised by a quick and kind yes.
But many times you hear the words, "we just can't do it".
You sigh and wonder what it's like to have all that power.
You wish they could see your child as just a child.
You connect with others...but feel alone.

Watching this post get shared over and over again felt like the craziest,
 most universe-binding hug I've ever had.

Strangers stood side by side with family members...all sharing the story...
and leaving the question hanging...

Why say no?

********

It's been the kids who have been amazing.
Watching both of my older kids advocate out loud has been breath-taking...
but their friends...
their articulate disappointment...
their stunning shock...
their "I stand with you" solidarity,
 that is the inspiration as well.

They get it.
They always do.

Us adults need to just get out of the way sometimes.

I don't know how the story is going to end.
I don't need to.
For this minute, on this day, I feel such tremendous community and connection and care that I can barely soak it all in.

Our world is changing.
Tiny baby step by tiny baby step questions are getting asked...
by the kids!

Left in their hands I feel so much hope.

When Patrick's classmates are old enough to be principals, they won't say no.
That idea alone: a parent asking and hoping...and a classmate of Patrick's remembering his or her own experience of what inclusion is really like...and saying yes....
that right there is the good stuff.

Mary Kate, you did it differently than me...but you sure did a beautiful thing.

I know that grace.
I know that beauty.
Let's keep doing it.
Together.

Tuesday, May 19, 2015

A Powerful Force For Love


Today I had Patrick's IEP (Individualized Education Plan) for his transition to high school.

I wasn't expecting too much since we had recently had another IEP meeting and pretty much set up all of the expectations for next year and planned it all out ahead of time.
This was just a more formal hand off:
You, junior high group, formally pass the torch to the high school group.

It was an intimate affair.

One school psychiatrist. One inclusion specialist from the high school. 
One junior high inclusion specialist and me.
And the person of honor: Patrick.

So we started out the meeting in the usual way.
Let's list Patrick's strengths.
Patrick, you go first.

Patrick was prepared.
Mike, his awesome inclusion specialist, had worked with him.
He listed off his reading, his love of Shakespeare, his love of drama...
and then he paused.

So the team, ever conscious of time, and the need for a steady pace, stepped in.
Mike asked pointedly: "Any more strengths, Patrick?"

Patrick was thinking about it.
I wanted to jump in and list the many, many strengths that I know he has.
But I resisted.

I distracted myself: I pondered how I would have handled this question 
asked of me in a room full of adults as a 15 year old.
I would have said way more ummmms.

[Once again, I considered how faulty this whole process was...
how contrived and forced.
What 15 year old would want to discuss his or her strengths or challenges in a room full of adults?
What adult would?
Asking a typical student to do this is hard.
Asking a teenager with a developmental disability to do this is Herculean.]

Patrick ummed for only a short second and then he hit it out of the park:

"Oh, and I'm a powerful force for love."

What on earth?
Never.
Honestly.
Ever. 
Have I said that phrase.to anyone.

There was a silence in the room.

I wasn't sure if they had heard him...but Mike did.

I agreed with Patrick and chimed in.
"Yes, he's a powerful force for love...but I'm not sure where that will go in our paperwork."

In my mind, I'm in a trance.

Powerful force for love.
Powerful force for love.
Powerful force for love.

Why, oh why, isn't that measurable?
Why does an ability to move fractions into percents seem to this audience as a greater strength?

Where's our humanity?

*****

What I love about this whole episode is that to those of us who have our days graced with someone with Down Syndrome this whole conversation doesn't seem so far-fetched.
People with Down Syndrome have a remarkable ability to keep it real.
To be candid and spot on.
They get to the heart of a situation.
They speak their minds...
without pretense or hidden agendas.

We just have to listen.

Or their genius gets overlooked...or lost...or worst of all, remains unknown.

No adult took the bait.
Patrick's comment went untouched.

Except for me.

His words just echoed. Over and over.

Powerful force for love.
Powerful force for love.
Powerful force for love.


His words became the haunting opportunity that remains largely missed in our schools.
Students with intellectual disabilities should be,
MUST BE,
included in typical classrooms...for this very reason.

THEY ARE A POWERFUL FORCE FOR LOVE.

And our classrooms need way more love.
Our typical students could sure use some love...
some acceptance...
some social, emotional acknowledgement.

Our schools need this powerful force,
way more than fractions or dates in history or grammar.

LOVE is the answer.

*****

Still, hours later, I'm hypnotized by those words.

Powerful force for love.
Powerful force for love.
Powerful force for love.

Maybe he said them just for my benefit.

They have forever changed me.
Patrick's words have become a mantra...
a challenge...
a request from the universe.
Most of all, they have become my heart's desire...
a daily affirmation...

to live more forcefully...
for love.

Let's be a powerful force for love. Today.

Sunday, February 22, 2015

The Power of One


For most of us, we live our days thinking we can smile at a stranger and make someone's day.
We can make a nice breakfast for someone we love.
We can take a photo or write a letter.
We can take out the garbage or fold a load of laundry or pick up someone at soccer practice -- living our days in our way, helping in little ways, being kind to the people we love 
and hoping the ripples keep going...out there.

We're making a difference in our way.

We've seen great people make great changes.
Martin Luther King
Nelson Mandela
Susan B. Anthony

and we think those people are "others" 
-- knowing greatness and living bigger-than-life lives their whole life.

They weren't doing laundry, right?

We plug away and that is good enough.

When you have a child with a disability, even the basics of plugging away seem far-fetched.

Laundry?
There's a life skills class for that.

Taking the bus?
Better have that written into the IEP.

Holding a job?
Having a relationship?
Making a difference...how real is that?

So on Wednesday night when Emily wrote down her life goals...
how much of a difference could it make?
She has Down Syndrome after all.
She's only 15.

Really, does anyone really care?

It was a shout into the void.

Or maybe it was just a secret of the heart...written down so that it got a little bit more real.

Here is her letter in her own writing, with her own spelling 
(checked by Emily with her cell phone -- motivation at its finest!)

The top three listed are her life goals:
1) go to college
2) keep learning
3) graduate like normal kids

*****

I'd like to take a minute here and discuss this idea of "normal" kids.
Seeing that written out so plainly actually hurt the hearts of several people who actively work for inclusion for students and people with disabilities. 
Those words brought people to tears.

But Emily is not dissing herself.
She's not feeling unworthy or less.

She's merely reflecting back what the school system and probably a large part of our world has been sending her as a message.

She's calling it like she sees it and there's a whole lot of power in that.

It's not sad or pathetic.
In her world, for her, it's merely accurate.
She wants to graduate.
(FYI: Many people with Down Syndrome are not allowed to graduate from high school...all they can do is get a certificate.)

*****

Three jobs Emily would like to have:
1) Make-up artist
2) Teach toddlers in preschool
3) Work at Jamba Juice making fruit smoothies


The last three listed are what she hopes will happen in high school:
1) Have the peer tutors put their phones away and help me.
2) I want the teachers to treat me kindly. 
Don't act like you are frustrated with me. I have Down Syndrome and I need help.
--> again we get a dose of Emily's realism...people, she needs help. She has Down Syndrome. 
Can somebody put their phone down and help??

What I love about this is that if this was written by someone with only 46 chromosomes, this comment could have come off as snarky or abrasive. But with Emily, there is beauty in her candor. She has no pretense. She has no idea that this letter is going to a larger audience. This is for her and she is listing what she truly needs. 

There is a take-your-breath-away honesty here that holds us all captive.

Suddenly we can see clearly into the heart of someone with an intellectual disability...
and you know what...
her heart is just like yours and mine.

It's full of hopes and dreams and basic needs.
She wants to be useful.
She wants to learn.
She wants some help.

Here is her final wish for high school:

I love the way Emily weaves the timeless and well known words of the song from Frozen into her own hope, her own truth, her very own plea:

DON'T LIMIT ME!

Emily lives in a world of limits and limitations.
We all do.
But for people with Down Syndrome it seems like the world loves to tell you what you can't do.

Your baby won't be able to breast feed.
Your baby will get sick often.
Your baby will not eat solid food for years.
On and on it goes...the list of can'ts and won'ts.

It's hard enough to hear when you're the parent. 
I can only imagine what it must be like to live with day in and day out.

Emily's final words were a battle cry.
A reminder for all of us.

Who are we to say you can't do something??
What do we know?

Emily is asking for a chance to be fully included in high school and we owe her that much.
She deserves the opportunity.
Clearly, she's capable.

Who could know how loudly Emily's words would resonate??
None of us could have guessed.
But her honesty, her raw pleas for help and her dreams have been heard.
Big.Time.

When Emily's mom shared her letter with me I knew I had to share it. I shared it on Facebook on our National Catholic Board on Full Inclusion page where in two days over 4,000 people had seen it! 
But it was when I shared it on Twitter that I watched a miracle unfold. 

For a while there on Twitter her letter was getting shared over and over.
The hashtag beside it:
#dontlimitme

Here is a moving blog post by an amazing educator and advocate for students with learning disabilities, Lindsey Lipsky. We connected via Twitter on the power in Emily's voice and her truth. 

Yes, Emily, you, my friend, have made a difference.

You have changed minds, inspired educators and energized an army of warriors who are on your side. Teachers, principals, professors, creators of programs and people in government agencies have heard and responded. 

Your words are rippling and sparkling and tickling the minds of so many.

Thank you for speaking your truth.

One person can make a very big difference.
Together we can change the world.
Let's get busy.
We have work to do.