Human Exceptionalism

The Triumphs and Tribulations of Rasing a Down Child

The Washington Post has a sobering front page story about what it is like to raise a Down child: Credit the selection of Sarah Palin as Vice Presidential candidate for the interest shown. I was heartened by some of what I read, and very much appalled. From the story:

But the parents of children who have Down syndrome say that raising a child with a disability can also unlock profound and uplifting truths about themselves, their children and the value of life in ways that others could never see…”People keep asking me, ‘So what do you think?’ I keep saying, ‘What is it exactly you want my opinion about?’ ” Pedlikin said. “People are paying much more attention to us. . . . Before, kids would stare, but not adults. Everybody’s curious: ‘What’s it like to have a kid with Down syndrome?’ ”

For Pedlikin and her husband, Philip, raising a boy with Down syndrome can be trying. They love their son deeply, act as forceful advocates for him and say his birth has changed their worldview in a positive way, but they acknowledge that their lives are much harder, more emotionally wrenching and often lonely…

Many parents also talk about how the phone never rings with invitations for a play date for their children or an offer to help carpool. Sometimes, they find themselves answering people who suggest that their child should never have been born

The sheer cruelty of this really set me back on my heels:

“My sister looked at me and said, ‘Why didn’t you abort her?’ ” Marsili recalled.

Can you imagine an aunt asking why her niece was permitted to be born? The answer was right on the money:

“I said, ‘What? Because we love her, and she’s my baby, and we love her!’ ‘But you knew,’ my sister said. . . . It was pretty shocking. Even people that close to me.”

I recall during the height of the Civil Rights Movement and in the years thereafter, we in the white community were urged to defend African-Americans as we lived our everyday lives, for example, by not laughing at racist jokes and speaking against racial stereotypes whenever we heard them. And over time, that made a huge difference. I am happy to say I don’t remember the last time I heard a racist joke

Alas, as we emerge from the thrall of one form of bigotry, another seems to be growing–aimed particularly at people with profound cognitive or developmental disabilities. The best way to combat the new eugenics is to do what we know works; individual activism during our everyday lives in defense of our brothers and sisters with disabilities. The bigotry and social isolation of the kind depicted in the story can be overcome–as racism is being–if we commit ourselves to vocally and visibly disapprove of discriminatory statements and attitudes toward those with cognitive and developmental disabilites.