On Disability

Having Grant has introduced me to an entirely new vocabulary. Down Syndrome, First Steps, Otolaryngology (ENT doctors), VSDs and DIs and PTs and OTs...bring it on. I'm learning.

But over the past three months, I've come to believe that some words in this vocabulary just aren't right. There's been national campaigns against the R-word, so I feel like we are making headway there, but there are some other words that this English teacher still won't accept (and I'm pretty sure I am past the denial phase in this grief process, so perhaps I am being defensive and naive here, but hopefully I am just being human). I'll be honest, too: I didn't really think about these words before Grant, and I know I used them, but now the meanings of these words really matter to me. And I just don't think they fit.

1. "Special" comes across as code for "different." Sure, my son is special--but he is special because he is a PERSON and all people are special.

2. "Down's Child." I didn't really understand the person-first argument until Grant was born. I kept hearing he was a Down's child, and I was okay with that...but the more I hold him and get to know him, the more possessive and proud of him I am. He's my child; Down Syndrome doesn't get to claim him. He is Grant, a beautiful and loved child of God who is going to laugh and play and read. And he'll have an extra chromosome. It will always be part of who he is. Only part.

But the word DISABILITY is the one that leaves me shaking my head. 

"Dis" means "apart" or "lacking." Lacking ability? Are we serious? The more I learn about people who are categorized this way, the more I am certain we've got this title WAY wrong. 

WAY WRONG.

Is this blind Boston Marathon runner lacking ability?

 Are these Special Olympians lacking ability?

Is Patrick Henry Hughes LACKING ABILITY?

The more I fall in love with this little guy, the more I refuse to accept this label.

In fact, people who have to rise above physical and intellectual challenges every day seem 

SUPER-abled to me. 

They have to work EXTRA hard to achieve what most of us take for granted. 

And yet they remain focused, determined, STRONG.

Disabled.

I just don't understand this one.

My son is not disabled.

He will be ABLE to do whatever he sets his mind to,

and the fact that it might take him longer and more effort to get there

means that he is STRONGER than I. 

He didn't do anything to cause Down Syndrome. None of us did.

It was a genetic fluke that occurred at conception. 

He didn't ask for it, he doesn't deserve it.

But I know he will succeed despite it. 

And that makes him SUPER-ABLED.

In fact, that makes him already my hero.

One final note: My dear friend Maresa asked me today about Will.

"He's great. He's become one of my best friends."

My three year old son is one of my best friends. 

I know it sounds ridiculous, but I also kind of think it sounds pretty beautiful.

We also have a theme song. 

We turn this up loud on our way to and from preschool,

and we laugh and dance.

I belong to you, you belong to me. You're my sweetheart.

These two sweethearts belong to me. I belong to them.

I am beyond lucky.

P.S. And then there is this. Sigh. All I can think about is the fact that people don't choose to be born with challenges. From the very start, they are different, challenged, and judged. This is so insanely unfair. Doing anything other than loving and helping and respecting them for the valuable people they are is unacceptable. When are we going to learn that we are all in this together? That we need to take care of each other?