4 kids in 3 years: reflections on motherhood, art and life.
I love the word retarded, and it’s a complicated love.
Third-Grade Me: “Blah, blah, blah, my retarded brother.”
In my memory time stands still in this very Quentin Tarantino way. Me standing in the bathroom with the three Charlie’s Angels friends: the smell of elementary school toilets, the sour yellow of the light reflecting off the tiles, the buzzing of the overhead fluorescent bulbs.
Kelly pulls her switchblade comb/brush out of her pocket, and opens it >CLICK< and slowly combs back her feathered hair. Jill pulls out the Bonnie Bell rollerball bubble gum lip gloss and slathers her lips >SMACK<.
Sabrina turns to me and says, “No. We don’t know anyone re-tard-ed.”
And third-grade me can’t help but think, your parents are dah-vorced, for god’s sake! Your Dad doesn’t even live with you! I mean, everyone knows retarded, right?
Then suddenly it all snapped into place. I pictured all the homes in all the neighborhoods, a satellite view, and I realized that every fifth house or so does NOT in fact have a retarded brother in it. Contrary to the days we’d spent visiting Butchie at his school with the other people who sometimes drooled or clapped a lot or pinched you or never talked or gurgled when they giggled, we were alone in this.
By middle school I realized that it was also not at all cool. I read it in a note that R.G. threw to C.H. about how weird me and my family were. And retarded. I stood alone on the playground for a couple weeks until I worked it out, found new friends or did something cool. Also, I figured out that I needed Bonnie Bell lip gloss, Nike sneakers and feathered hair. Also, maybe the rainbow suspenders were not such a great idea. But I digress.
In high school, sitting on the bus my freshman year, someone said something about a tart cart. This I thought was funny. Those short buses? They looked like toasters where you toast pop tarts, hence, tart carts, right? HAHAHA! Until my forever-friend Janice turned to me and gently said, “No, Jen. It’s because of the word re-tard-ed.” But that doesn’t even rhyme, Janice. Tard card?! Are these people stupid?!
And that was it. Somewhere close to right about then I decided that I was taking the word back.
I had a brother and he was severely retarded. That’s what the doctors said 50 years ago. That’s what it said in his medical records.
I have to say, he wasn’t developmentally delayed, like there was something he’d catch up with. And he wasn’t disabled, like a tractor trailer on the Schuylkill Expressway. He was retarded, like a momentary ritardando in music, rit. or ritard., when the music slows waaaay down and you breathe deeply and then ease through the moment, listening more closely, feeling it a bit differently. Things are suspended in that moment. S-ussss-pen-deeeeeeed. (Whisper it. S-ussss-pen-deeeeeeeed.)
In a recent TLC documentary about “Benjamin Button” disease (http://abcnews.go.com/Health/40-year-child-benjamin-button-children-grow-age/story?id=12724960) they feature a young man named Nicky Freeman. In one shot there is a time-lapse moment where people rush, rush, rush around him and he sits perfectly still for what seems like hours. My brother had an unbalanced translocation (trisomy 12X21) not Benjamin Button disease, but it was that stillness, that startling sense of possible wisdom, the ritard. in the music, well, that moment in the documentary took my breath away. My brother had that childlike beauty, could possess the inner stillness and sense of knowing something more important (when he wasn’t pulling my hair, clapping his hands at Woody Woodpecker or stealing food.)
I dated a lovely boy in college who had a lovely sister who had severe developmental and intellectual delays. When I met her she and I played with one of those toys where you slide the wooden beads back and forth over coiled metal wires. Back and forth. Back and forth. Back. and. forth.
He talked about the things his mom was doing to catch her up; diet, therapy, specialists, homeopathy, allergists. His mother was going to solve this thing going on with her daughter. Maybe she’d go to college someday. A little bit I felt guilty. We never tried to catch Butchie up to anything. We tried to keep him alive and eating and walking and hopefully using the toilet. But a little bit I felt annoyed. She is who she is. She was the youngest in their very brilliant family. When she was born they maybe expected something different. In our house Butchie was born first. Maybe he expected something different.
So when you say, “That’s so retarded,” around me and you’re an adult (like the school diversity coordinator who once said that to me… seriously), I’ll say, “Some of the nicest people I know are retarded.” And if I teach you I will tell you about my dear brother on the first day of school and then if you ever say, “This picture I drew is so retarded,” or “I’m so retarded,” you will either stand on one foot for a minute or run around the building, depending on the location of the classroom. And if I coach you, you’ll do push-ups. That word is not your word unless you are using it to describe something unique, dear, complicated.
For me, Butchie was and always will be retarded, not a person with severe developmental delays. Ritardando, ritard., rit.: a reminder to be patient, to be exactly who you will be, to slow down, to stay in the moment, to breathe, and to listen more closely to the music.