Sunday, February 22, 2015
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
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.
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.
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:
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.
And for wishing out loud.
One person can make a very big difference.
Together we can change the world.
Let's get busy.
We have work to do.