Thursday, October 1, 2015

Working Myself Out of A Job

It's October...
pumpkins and falling leaves and that wonderful scent of changing seasons.

It also happens to be Down Syndrome Awareness Month.

My Facebook feed was blowing up today...
filled with cuteness overload of children who have Down Syndrome.
Of course, I smile big when I see this
because frankly, I don't see enough almond-shaped eyes with Brushfield spots in my daily world.

I live in a town of 60,000 people.
With the rate at which Down Syndrome occurs in our population - which is 1 in every 691 births - 
my son, Patrick, who is 16 should have almost 100 other people in our town with Down Syndrome.
If we're lucky, we have about 25.

There is not a single child with Down Syndrome who is my son's age in our town.
Not a year apart.

The closest child is 4 years younger or three years older.

Which makes it pretty clear that where I live many, many people chose not to have their child with Down Syndrome when they found out in utero that their baby had Down Syndrome.

What a colossal loss.

If only they could know, really know, what they missed out on.

But how can you explain it?

How do you advocate for someone's right to live?
How do you dispel the fear?
The ignorance?
The cultural bias against people who have a lower IQ?

Why would you choose to have your baby if it were diagnosed ahead of time with such a 
terrible, debilitating, sad condition?

Because the real truth is that having Down Syndrome isn't debilitating, terrible or sad.

What's sad is living in a world where people think that.

Living with people like Patrick requires an understanding that people need support.

Ummm...spoiler alert: we all need support.
If not right this minute, then later on down the road.

If you don't enter the world of disability as you age, you're dead.
There's no other option.
You need support as you age.
It's a given.

So why is it hard to give support earlier?


Here's the deal, people like Patrick are just...
People who have likes and dislikes.
People who have strengths and challenges.
People who have hopes and dreams and crushing disappointments.


What people like Patrick need is equality.

If people like Patrick were equal, we wouldn't need Down Syndrome Awareness Month.
We wouldn't need to beg, cajole, nudge and encourage schools to open 
their typical classrooms to them.
We would see them working in regular jobs in regular places.
We wouldn't need separate proms, separate teams, separate camps.

We wouldn't need ultrasound.
Because your life wouldn't be up for debate.

We would just be together living our lives...figuring out ways to offer support and welcome.

And that, my friends, is the month, year, decade and century I want to celebrate.

I want to have a baby born with Down Syndrome and to never hear the words: 
"I'm sorry."

I want people to cherish and understand the incredible, astonishing gift that people with 
Down Syndrome bring to our world.

No, they are not happy all the time...
but they understand how to love deeply and with abandon.

If you are lucky enough to enjoy this love, you know how it feeds your soul.

This depth of love is special to the 21st chromosome.

People with Down Syndrome offer a lightness to life.
They offer kindness and graciousness.
They get the important things and have an honest way of cutting through the BS.

They really are needed in our world.
They aren't optional.

They offer a necessary message...
a must-hear letter from the universe: love and kindness and light...
this is what matters.

So, join me, in dreaming of a day where nobody celebrates Down Syndrome Awareness Month.

Help me, work myself out of a job cheerleading for the basic rights of people with Down Syndrome.
I can't wait to just kick back and enjoy October.