An hour with Penny :Encountering Down syndrome

[Guest guest]

An hour with Penny

Encountering Down syndrome

by Amy Becker

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

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.http://www.christiancentury.org/article.lasso?id=8111