feels sharp as swords or stones. I am no saint.
I have wanted to write about this for so long, but am completely daunted by the task. How do I get it across, the way words can hurt you, can hurt the ones you love?
I have tried to post about this on my blog. I have tried to put it in an essay. But so far, all I have managed is a few lines in a poem, the poem which provided the title of both my blog and my first collection of poems, "Saint Nobody." It refers to an actual incident, less than a year after my daughter Stella was diagnosed at birth with Down syndrome, and I suddenly found myself a new world, or at least a new country--the sort of experience that Emily Perl Kingsley describes as landing in Holland when you thought you were headed on a trip to Italy.
My friend had even heard me talk about the language of disability, the way certain words set my teeth on edge. She knew that "mentally challenged" or "developmentally delayed" were the "right" words to use. But somehow she forgot--she couldn't help it, because "retarded" sprung easily to her lips, as it always had to mine.
Since then it has come to sting less and less, and I admit that I (and Stella's father) have slipped and used it ourselves from time to time--I sometimes joke privately that my daughter has Down syndrome, but I'm the one who is "retarded."
I remember what it meant to me as a kid--a joke, a random insult, occasionally referring to an actual intellectually disabled person, but usually removed from its concreteness. There was always something vaguely shameful about it, but its noun form, "retard," was clearly much worse. I felt the frisson when I read a food label--"sodium benzoate added to retard spoilage"-- or on my piano music "ritard." as an abbreviation for "ritardando," a gradual slowing down, usually followed by "a tempo," bringing the piece back up to speed.
And really, that's where the word comes from to begin with--slow, slower, slowest. The Online Etymology Dictionary gives this heritage:
1426, "fact or action of making slower in movement or time," from L. retardationem, from retardare "to make slow, delay, keep back, hinder," from re-, intensive prefix, + tardare "to slow" (see tardy). Retarded "mentally slow" first recorded 1895. Retard (v.) first recorded 1489, from O.Fr. retarder (13c.); offensive noun meaning "stupid person" (with accent on first syllable) is from 1960s slang.
So my generation was the first to grow up with"retard" in that sense. And, then, its even harsher truncation, "'tard." After awhile, you get so used to hearing (and using) these words that they lose their effect.
Or do they? Visiting my friend Tara's blog today, I discovered that there is actually a movement afoot to raise awareness about this very issue. Tara, whose daughter Emma Sage was born six months before Stella with the same diagnosis, posted two youtube videos--one the trailer for a short documentary called Offense Taken, about a community's protests against offensive use of the "R" word, and the other an appearance on the Bonnie Hunt Show by John C. McGinley (aka "Dr. Cox" from Scrubs) McGinley, whose 11-year-old son has Down syndrome, is wearing a t-shirt stating "SPREAD THE WORD / TO END THE WORD / 03/31/09. A website connected with the Special Olympics explains:
On March 31, join youth and actor John C. McGinley in a day of
awareness for America to stop and think about their use of the R-word.
Hold your own local event.
As it happens, I'm scheduled to give a poetry reading that evening at Cornelia Street Cafe in the heart of Greenwich Village, that neighborhood that so prides itself on tolerating difference. I'll try to figure out a way to bring this topic into the event somehow.
No, I am no saint, just because my daughter was born with a chromosomal abnormality that produces some differences in development. But Stella, the girl herself (pictured above, in blue, dancing with cousins at her aunt's wedding last Saturday, which happened to be World Down Syndrome Day), makes me want to try, as a poet and as a parent, to live up to the privilege of watching her grow every day.