This week I had the opportunity of taking care of a six year old boy with autism. He spoke a different language, one I had never learned, and I looked to his mom for the translation. Even she admitted it was sometimes hard to understand him because he did not communicate like “normal” children, but over the years she and her husband had learned to anticipate his needs. A young girl with cerebral palsy lay crying in another hospital bed, equally unable to communicate like a “normal” child her age, but her dad hovered over her in the darkness and talked gently to her, attempting to soothe her.
I think the reason so many of us feel uncomfortable when dealing with disabled people is because we fear what we don’t understand, and how can we understand when we have such limited exposure? I was reminded of a beautifully written excerpt (below) by Emily Perl Kingsley that shows how disabilities are not the “horrible” things many of us imagine them to be, but instead they are just “different” than our expectations and can be beautiful in their own right. Every life is precious.
I am often asked to describe the experience of raising a child with a
disability – to try to help people who have not shared that unique
experience to understand it, to imagine how it would feel. It’s like this…
When you’re going to have a baby, it’s like planning a fabulous vacation trip
– to Italy. You buy a bunch of guide books and make your wonderful plans.
The Coliseum. The Michelangelo David. The gondolas in Venice. You may
learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your
bags and off you go. Several hours later, the plane lands. The stewardess
comes in and says, “Welcome to Holland.”
“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy!
I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan.
They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting,
filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guide books. And you must learn a whole
new language. And you will meet a whole new group of people
you would never have met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy.
But you’ve been there for a while and you catch your breath, you look
around… and you begin to notice that Holland has windmills…and Holland
has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy…and they’re all
bragging about what a wonderful time they had there. And for the rest of
your life, you will say “Yes, that’s where I was supposed to go.
That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away…because the loss of
that dream is a very very significant loss.
But…if you spend your life mourning the fact that you didn’t get to Italy,
you may never be free to enjoy the very special,
the very lovely things…about Holland.