An hour with Penny: Encountering Down syndrome

January 12, 2010

There were five of us around the table: my husband, myself, my mother, and two medical students who had been assigned to dinner at our house. One of them said, “My parents always wanted more for me—a better education than they had, and a better job, and a higher salary. A better life. So isn’t it hard to have a child with a disability? Don’t you want so much more for her?”

These young men were in the midst of a pediatric rotation, and they had one day to learn about children with disabilities. They had arrived at our house in the late afternoon. Penny, our three-year-old daughter, who has Down syndrome, greeted them. “Hi,” she said, her neck craning to see their faces. Soon enough they were sitting cross-legged on the floor, with Penny pouring tea and offering “tookies.”

They spent an hour playing, and once Penny was in bed we ate together and talked about our family. As the night went on, these young men grew more and more candid. They told us that earlier in the day they had been asked to consider four different types of disability: spina bifida, cystic fibrosis, Down syndrome and disfiguring burns. If they were a parent, which one would they want most and least for their child? In ranking those four categories, they had marked Down syndrome as the least desired.

Yet the reason they were telling us this story was that being in our home had changed their understanding of what it means to live with Down syndrome. When they left, they told us they were grateful for the evening not so much because it influenced their career as doctors, but because it had changed them as individuals. They had been humbled by the opportunity to come to value another human being, in this case a human being with Down syndrome.

A few days later I read Jesus’ parable in Matthew 20 about the workers in the vineyard. It begins with familiar words, “The kingdom of heaven is like . . .” and tells the story of a landowner who hires workers at five different times over the course of a day and then pays them all the same amount. Jesus concludes with the statement, “So the last will be first and the first will be last.”

It’s a troubling story. It’s designed to challenge people like the Pharisees, Jesus’ original audience, and people like me, with plenty of resources and religious piety and a college degree. People like the medical students sitting at our table, earnest and confident and smart and accomplished. People who think that the value of a human being can be measured by salary, educational achievements and leadership positions. Who think that such success in life comes because we have earned it, and that others only need to work harder to achieve what we have, whether in matters of faith or finances.

I wasn’t sure what to make of Jesus’ words. Was I to conclude that diligence just doesn’t matter? That God doesn’t care what I do? Or, worse, that as someone who is “first” in this world, I am in trouble with God?

I think Jesus is getting at something more. The master doesn’t devalue the workers who worked all day. He pays them what he had agreed to pay—a full day’s wage. But he pays the workers who only worked an hour the same amount. He isn’t devaluing those he hired first, but he is elevating those he hired last.

The workers hired last knew their status: outcast. Unemployed. Failure. Un worthy. By paying them first, and by paying them with a recognition that they had been trying to work all day long even if they hadn’t actually been working, the landowner offers them a new self-understanding. Instead of seeing themselves as worthless, they can see themselves as valued. Just as valued as the winners, the ones who got the job with the contract at the beginning of the day.

And in a parallel moment, the last had become first when those medical students had dinner with us. I could envision Jesus at our kitchen table telling those students that for all their hard work and good grades and accolades, he didn’t consider them any more important than this little girl with an extra 21st chromosome, with glasses, a speech delay and a hearing loss. I could envision Jesus explaining that they each had something of equal worth to contribute to God’s work in this world. The kingdom of heaven had come among us, for just a moment, when those students saw Penny as a gift.

When Jesus makes a statement such as “The last will be first and the first will be last,” he isn’t just providing a picture of the end-times or heaven. He’s inviting those of us who follow him to enter into that kingdom mentality right now.