July 29, 2005 7:05 AM
Who's really disabled?
Thanks for all the comments on yesterday's post, including private ones.
I haven't yet posted the story on my friend because she's promised me some photos. And you know it's true - a picture is worth a thousand words. Or more. But since I love to write, there will be my thousand words as well :)
I have a busy day coming up as Jonny and Maddy have their final performance of Treasures, a musical about Tom Sawyer. Maddy is playing Huck Finn and sings the title song. Jonny is Freddy, a friend of Tom Sawyer's. I was bustin' my buttons watching them last night.
This is a theater workshop called The Growing Stage which runs 9-3 for three weeks every summer. My kids have participated for three years since we moved here.
This year there were two new directors. I hoped they would be as creative in casting Jonny - who had Down syndrome and loves to act but whose speech is mostly unintelligible (to anyone but Maddy). I needn't have given it a second thought.
Talking to one of them afterwards, it was clear that she loved having Jonny. They gave him a couple prominent parts and during the dancing scene - which would have been too difficult for him - had him kinda tapping out time downstage and drawing attention to the dancers. It fit perfectly!
After 13 years of living with a child with disabilities, I've learned I really don't have to worry about people's reactions. When they meet Jonny, they melt - usually immediately. But for the 5% who take a little longer, all they need is time. The boy who three years ago seemed so standoffish and confused by Jonny now spent most of his time on stage completely engaged with his character.
That's the beauty of being involved with people with disabilities.
It's ironic - in a beautiful way. Their families and therapists and caregivers and teachers and directors think in terms of helping them reach their potential. But the truth is that God uses those with disabilities to help us reach ours.
It's fear that causes people to objectify people with disabilities - that is, to treat them as objects to be discussed rather than human beings with voices of their own.
God has not given us a spirit of fear.
But sometimes we have to take extra measures to get over our fear.
Here's what I recommend for those "intellectuals" who want to weigh in on the fate of the disabled: Take a break from your keyboard and get involved in your noncyber, hands-on community, particularly looking to serve people with disabilities. Volunteer for an Easter Seals program. Read to kids at the hospital. Set up a Sunday school class for special needs kids or adults in your church and bus them in from group homes to learn about Jesus and his love for them. Offer to babysit or somehow help in a self-sacrificing way that family or that single mother with a disabled child in your neighborhood. Between doctors and therapists and researching our kids' needs, we could all use a break - maybe even more than parents of "perfect" kids.
Come to think of it, that might be why when Jonny was born Tripp and I weren't grief-stricken and wracked with fear. We'd babysat for a 6-year-old girl with Down syndrome whose father had left her mother after she was born.
What a privilege it was to step outside our narrow little world and learn something new.
For anyone presuming to answer questions about life and death, I heartily recommend that you broaden your sphere of experience first.
If a picture's worth a thousand words, experience is worth a million.
Posted in Disabilities | Permalink
Comments
Amen!
Posted by: Julana | July 29, 2005 1:15 PM
Malcom (DS) melts people too! He's a hugger. I'll be talking to someone and holding him and he'll reach out his little arms to be held by that person (even if he's never seen them before). Then he just hugs and hugs. I'm never sure how people are going to react, but every time they've been moved. Our bible study leader says you haven't been hugged until you've been hugged by Malcolm.
I find so much encouragement from your blog (and I am enjoying my copy of the Mommy Manuel very much)
Posted by: Maggie | July 29, 2005 6:17 PM
