The last week or two have been disheartening to me as the mother of a child with special needs. Every few days, something new pops up to outrage or discourage me.
It started on the first of November, when CNN reported that a doctor’s request for permanent residency in Australia was denied because his son has Down syndrome. Frankly, I thought it was an exaggeration, so I read the whole story—and unfortunately, it wasn’t. Australia brought him in on a work visa b/c they needed doctors, but when he wanted to settle permanently, they balked at taking on the possible medical expenses associated with a person who has DS.
Then there was the stink about the movie Tropic Thunder and its use of the word “retard.” We don’t watch many movies anyway, anymore, but that particular controversy hit close to home.
Last week, a fellow pastoral musician related that her pastor had decided that one of their most dedicated altar servers was not to serve at a Mass with the auxiliary bishop. The boy has Down syndrome, and the pastor thought some of his mannerisms or habits would offend the bishop. To be sure, they were real liturgical infractions, like singing along with the presider during the Eucharistic prayer. But come on—how petty can you get? Does it justify discrimination, which is absolutely contrary to Christ’s teaching? Liturgy is important, but this sets it up as an idol. That priest decided that the form of the liturgy was more important than the people who participate in it.
It doesn’t end there. A few days ago, a group of neighbors in a nearby town held a closed meeting to discuss a group home that had been set up in their subdivision. Their initial fear was that it was a halfway house, and I grant that things settled down somewhat when they found out the men were developmentally disabled, not convicted criminals. But, as best I can tell from the newspaper, they’re still trying to find a way to object. It’s a business, not a single family dwelling—and that’s against covenants. Covenants, phooey. That’s just a mask for bigotry—pure, ugly and simple. We don’t want Those Kind of People living in our neighborhood, because They make us uncomfortable. It reminds me of that line in Beauty and the Beast: “We don’t like what we don’t understand; in fact it scares us.”
And why this lack of understanding? Because in America at least, there is a massive double wall barricading “normal” people from “disabled” people.
Wall #1: the missing multitudes. D
id you know 90% of kids diagnosed prenatally with Downs are aborted? Ninety percent! ****** And along with all those people who are denied the right to live, everyone else is denied the right to know them. How many people go through life without ever getting to know a person with Down syndrome?
Wall #2: Special Education. Thank God, inclusion is becoming more common—kids spending a good part of the day in the regular classroom. But in places where children with special needs are isolated in a special ed classroom for a good part of the day, “normal” students have virtually no meaningful contact with them. I use myself as an example. There was no special ed at St. Pius, and although there were kids in high school who were in a special ed classroom, in four years I never even learned their names. We might as well have attended different schools. So by the time I gave birth to Julianna at the age of thirty-two, I’d had virtually zero exposure to people with mental retardation. Physical, yes. Mental, no.
And this is the climate into which the prenatal diagnosis is tossed, along with a laundry list of cold, impersonal, scary facts, like open heart surgery, childhood leukemia, and so on. I’ve been there. Trust me, those facts are scary as Hell, and I don’t use that word flippantly; I mean Hell. Because of the above societal walls, many parents have never had a meaningful encounter with a person with DS; they have no personal experience to counter the sheer terror of that prenatal diagnosis. Considering all this, it’s no surprise that 90% of them will choose to abort, thus ensuring that this appalling cycle continues.
Take a deep breath, Kate.
#26 on my Gratitude List is this: that God gave Julianna to Christian and to me—two people whose lives are public from top to bottom, from Christian’s job to our music ministry, the lessons we teach, and our Natural Family Planning witness. I am grateful that God has given us, and Julianna, an opportunity to encounter hundreds of people who will see that Down syndrome is nothing to be frightened of. That life with her is rich, beautiful, good, holy. Chaotic, yes, but precious. Oh, so precious.
And #27 can be this: that my pessimistic picture of gloom is not universal. Among the other news stories this fall were the stories of Kristen Pass, Annie Bryant, and Jesse Campbell, who were homecoming royalty this fall 2008, in their respective high schools.
In closing, I invite you to watch this short video, a public service announcement that aired in response to “Tropic Thunder.”
******In 2008, this was what we all thought was true, but in fact is not. See here for more details.