Parenthood is fraught with impossible situations, heart-wrenching moments that test even the toughest among us. And while these situations may change everything we think we know, the new normal can be exactly what we need in order to see the world in a different, and perhaps better, light.
by Alison Piepmeier
My daughter, Maybelle, has five floppy girl dolls, all hand-me-downs from an older girl Maybelle loves. One of the dolls – who was Maybelle’s initial favorite – she named Lela. The rest are “the girls.” Lela and the girls. Like a music group. And, in fact, that’s sort of how they function: In the mornings, we play music, and she sits on the floor with Lela and the girls, and they all dance and dance, bouncing and flopping their arms.
When the music becomes especially inspiring, Maybelle herself has to dance, and I’m part of this morning routine: She comes and grabs my hand, and we clear off the living room floor. Then we fling our bodies around – sort of like Lela and the girls – to “Mickey” or “Groove Is in the Heart.” I’m trying to teach Maybelle to move her hips, but, being 5, she doesn’t yet really have hips. So she bends her knees, jumps, claps her hands, and I keep dancing with her until I work up a sweat.
This is what I’d hoped for in parenting: We are thoroughly enjoying each other. I’m getting to live a sort of motherhood that feels comfortable to me – and to her, too. I knew from the outset that there were some expectations for “appropriate” motherhood that I’d be ignoring: I wasn’t that concerned about teaching Maybelle to be a “good girl,” which is a category that distorts people. I was eager for her to be a bit of a troublemaker, particularly the kind who sees injustice and challenges it. I didn’t care about beauty and was happy for her to have her own distinctive appearance (and if that means wearing a Wonder Woman outfit to school, so be it). I was far more concerned with teaching her to express her own sense of the world than with teaching her to follow the rules and be compliant.
And Maybelle is the kind of person I hoped she’d be: happy, loving, curious and delighted to explore the things around her. She has her own opinions, which she’s learning to communicate: She’ll tell me “No more ‘Mickey.’ Shosheph!” when she’s ready for the three millionth playing of the soundtrack to Joseph and the Amazing Technicolor Dreamcoat. She always tries a sip of my coffee and pronounces it, “Hot coffee! Yummy!” This is an ideal morning. It’s the sort of joy and playfulness and connection that I hoped my child and I would have together.
When I learned that Maybelle had Down syndrome, shortly after her birth, I had the momentary terror – familiar to almost all parents of children with Down syndrome – that this kind of happy life would not be possible. That this dream had been destroyed. That my daughter was broken.
Right now I’m in the midst of writing a book called The Good Mother: Confronting Impossible Choices and Changing the Game. We’re in an interesting moment in our culture. If pregnant women learn that the fetus they’re carrying has Down syndrome – the prenatal condition most often tested for – 60–90 percent of these women terminate the pregnancy. Now that noninvasive prenatal tests are being marketed, I suspect we’ll see more and more women have this early, safe testing, and more and more women terminate their pregnancies.
I’m a huge supporter of reproductive rights. I don’t by any means want to suggest that women who terminate their pregnancies are making the “wrong” choice. Reproductive decision-making is entirely personal and shouldn’t be done by anyone but the pregnant woman.
So I’m not saying that women shouldn’t have abortions. What I’m saying is that our understanding of Down syndrome and intellectual disability in general is really skewed. We don’t know what Down syndrome is like – we see it as a “defect,” a “disease,” something that should be eradicated rather than something that enriches the world.
Because our understanding of intellectual disability is skewed, pregnant women find that they’re faced with a set of incredibly difficult choices: to get testing or not, to terminate or not. How do you make this choice? On what basis? Do you decide that people who don’t fit our cultural expectations shouldn’t be allowed to be born? Do you decide to bring a child into a world where he or she will suffer?
Being forced to make a decision when there are no good options: In political theory, this is called Hobson’s choice. In chess, it’s called Zugzwang. In Star Trek, it’s called Kobayashi Maru. This idea seems to be at the crux of many of the conversations I’ve had with parents and potential parents. You must make a decision (if you’re pregnant, you don’t just get to pass on your turn), and you can see quite clearly that there are no good options available. What do you do?
I find I’m drawn to the Star Trek story of James T. Kirk, who is the only person ever to have “won” in the Kobayashi Maru. He recognized it was rigged: Everyone was supposed to lose. But Kirk doesn’t believe in no-win situations. So he undermined the game. This is essentially what one group of parents has done: They recognize the desperate, unfair situation. They recognize that they might be bringing a person they already love into a hostile world. And they decide that they will change the world.
Ultimately what I want us to consider is changing the game, working to understand disability as a form of human diversity. This means creating communities – individual and international – that welcome people with disabilities like Down syndrome. We need practical support – occupational therapy, inclusive schools, college programs like the REACH Program at the College of Charleston. And more important, we need to change the way we understand the world: We need to recognize that human value isn’t based on IQs, contributions to the tax base or the ability to fit into existing systems. Let’s consider that our existing systems are broken. Maybelle doesn’t need to meet certain standards to be a viable human being. She is valuable just exactly as she is.
She is helping me to begin to imagine and create a different kind of world.
– Alison Piepmeier is an associate professor of English and director of the Women’s and Gender Studies Program.
Illustration by Angela Dominguez