In a Perfect World, None of Us Would Belong

The Boston Globe

It's all about juxtaposition.

I had been to visit Chris McLean at Norwood Hospital. Chris has fluid around his heart. He's 52. I've known him since he was 5. He isn't any more or less extraordinary than anyone else. He's just one more person who was born and shared his childhood with his brothers and sister, who loved sports and Big Macs, who graduated from high school, got a job, cried when his parents died, but, like most of us, has continued on, enjoying what is while not forgetting what was.

The only thing extraordinary about Chris are his eyes. There is no deceit in them or guile or boredom or indifference or impatience or anger or envy or judgment or pride. There is not a speck of false emotion either. What you see is what you get. Every smile, every tear, every feeling is real. 

Chris, like most other Americans in their 50s, has gray hair and is overweight. Unlike most Americans, however, for his entire life a label has defined him: Down syndrome. I sit in a hospital room and listen to him and look in his eyes and wonder why.

"I had to have an operation," he says "I have to go to rehab. But how about you? How are you? How's the family? How are your girls and your son? Is he still in New York? Are you still working? Did you go down the Cape?”

With Chris it's always, "How are you? So good to see you."

Why doesn't this define him? 

Chris goes with the flow. He's in a room with three other men and I say, "You sure have a lot of roommates." And he says, "They don't bother me.” He's happy with his scratch tickets, his tuna fish sandwich, his Clive Cussler book, and his visitors. His sister has come by. His brother from California. And his brother John. "You missed him. He was just here.” 

I left the hospital smiling.

Later, I went online. And there it was. The future. A future without people like Chris.

Switzerland is the latest country to approve a blood test, which identifies fetuses with Down syndrome early in pregnancy.

The tests will be available there in mid-August. Next in line waiting for government approval are Germany, Austria, and Liechtenstein. In the United States, multiplecompanies already offer similar tests.

What is so wrong with people like Chris McLean that the world would deny them life? Is it their height? Their weight? Their almond-shaped eyes? Their speech? Their gait? Their IQ? Is it a desire for perfection that has spawned these tests? And how soon will the standard for perfection be raised? Will future tests target all short people and overweight people and people who need glasses and people who lisp and people who limp and people who have trouble with math? Will they be eliminated, too?

And if it's perfection the world seeks, what about those who are born healthy, but then get sick or are in an accident or grow old? In a world where only the perfect are allowed to be born, will those who become imperfect be exterminated, too?

What is perfect anyway? Perfect babies can grow up to be liars and thieves and killers. The world looks at what's wrong with people with Down syndrome instead of what's right. And spends its resources trying to eliminate them instead of trying to help them.

"First they came for the Socialists, and I did not speak out because I was not a Socialist.

Then they came for the Trade Unionists, and I did not speak out because I was not a Trade Unionist.

Then they came for the Jews, and I did not speak out because I was not a Jew.

Then they came for me and there was no one left to speak for me.” 

Pastor Martin Niemoller said these well-known words after the Nazis eliminated millions of people who didn't fit their mold.

Old truths are eternal.

Perfection is an agenda. And a slippery slide.