Changing Our Tune

Changing Our Tune

POV illustration (faculty)

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


  • This column is insulting to women who choose to terminate for Down syndrome (as well as other disabilities) while simultaneously being insulting to those who advocate for DS awareness. Well-done there.

    To compare the complex, incomparable decision of terminating a pregnancy due to a medical anomaly (what DS is) to a kitsch science fiction show with a poorly unpacked cinematic games metaphors is staggeringly wrong. Termination is not a game, nor does it serve a deeper understanding of to discuss it as one.

    You’ve done nothing more than suggest that women who choose this route want to “eradicate.” That is thinly veiled pro-life language which suggests the decision to do so was made with a single-minded purpose, uniform in its process, across a wide population of women: women who operate on “skewed” information no less.

    And then to say that the game is rigged or that there’s a lack of information about DS in the public is to double shame those who work with non-profits to share information, saying their work is of no consequence, has had little effect, and has had no bearing. Who exactly is rigging this game?

    I terminated for t21 and while it was a sad situation, I do not regret my choice, I was not misinformed, and I can absolutely say that even with the best societal grid in place to help those with a disability, it would not have changed my choice at all. And I can say this with authority, as I myself have a disability and know what it’s like to navigate through medical and social challenges. The child we terminated had a one-chamber heart. Exactly what social reality would have changed that?

    In fact, it’s something that you overlook…how would having a better system in place for disability change the way people select abortion? You yourself have written about your abortions, and if there were better systems in place (financial, child care, career impact), would that have changed your decision?

    It’s strange that you don’t think that women who terminate are SCARE QUOTES AHEAD “wrong” yet the rest of the article tries to convince otherwise. You speak about changing the game, how about starting with the community you are writing about?

    – What about using your position to agitate within the DS community to consider termination as a valid and equally necessary choice as carrying to term or adoption? The pamphlets given to genetic counselors have minimal information available in them, if at all, depending on the source? Termination seems to be a verboten topic in DS, why not give it equal and important measure?

    – Using the same concepts of people-first language use, how about stopping any moral or judgmental language regarding termination. Why even bring up the concept of “wrong”-ness? Why throw that moral frame around it?

    – Why not take a long and hard look at why you would conflate the “value” of your daughter as an extension of whether others terminate or not. How is another woman’s decision to terminate in any way related to your daughter’s place in this world?

    You seem deeply conflicted and unsure of yourself, hence, I guess, the reliance on a tired space trope of Kirk. But I ask you to think deeply about your title. The impossible choice? Again, how insulting. And it’s not impossible at all.If it were, then there would be no terminations, would there?

    As you said, 60-90% of women who have a prenatal DS diagnosis do just that. Perhaps it would be better if you put away the childish Star Trek language, and think about Douglas Adams. It’s an improbable choice. But one that I and many other women have made.

  • First and foremost, you’re a great mom. Maybelle is lucky to have you. I don’t think that Maybelle’s intellectual disability is what makes you a great mom … you would be that on your own anyway, extra chromosome or not.

    In regard to the book you are writing, “The Good Mother: Confronting Impossible Choices and Changing the Game”, I’m curious as to why you would choose the cliche word “good” when in a previous paragraph you talk about “good girl” being a category that distorts people. Wouldn’t the term “good mother” also be another distortion? And if other mothers out their made different choices than you would that automatically made them “bad”?

    You mention that with early prenatal testing more women will terminate their pregnancies. Is this speculation on your part? I recently attended a continuing education seminar conducted by two parents of children with Down syndrome (Ds), with two additional guest speakers who were also parents of children with Ds. ALL four were pro-prenatal testing for trisomy 21. One parent had every possible test she could have at the time — before non-invasive prenatal testing (NIPT) was available and chose to give birth anyway; she stated that she was so glad she was prepared. The only male speaker at the lecture who was a physician didn’t go through much prenatal testing at the time because his wife was not of advanced maternal age and never imagined they could have such a diagnosis having had two previous children with a normal number of chromosomes. The doctor said that he wished that NIPT had been available or the very least they had done more prenatal testing; he made it very clear that in no way would it have been done to terminate, but that he could have prepared himself more for the diagnosis of trisomy 21 (Ds). He said he wasted so much time in the first year of his daughter’s life grieving and adjusting to the Ds diagnosis instead of being present and accepting.

    You have made a blanket statement that “we” don’t know what Ds is like. That’s a huge leap to make the assumption for everyone. You also suggest that “we” see it as something to be eradicated. Another we. Not everyone is on board with your “we”. Many women choose willingly every day to give birth and occasionally adopt a baby with Ds — they certainly aren’t in the “we” you write about.

    Many scientists are working to study trisomy 21 because it is a chromosomal aberration — a deviation from the norm with many gene-linked problems to include Alzheimer’s. Another assumption you make is that Ds enriches the world … sometimes yes, sometimes no — most anything can have a positive spin if you take the time to look. People can take a cancer diagnosis and say that it enriched their lives … some women can take a past experience of a brutal rape and say that too enriched their life.

    Another blanket assumption you make is that our understanding of intellectual disability is skewed … this assumption is skewed.

    You say that you’re a huge supporter of reproductive rights … but it only seems to be to a degree as long at it’s “your” abortion on your terms. When you say you don’t want to suggest that women who terminate their pregnancies are making the “wrong” choice … you actually make an excellent job implying that it’s wrong by simply writing this statement. Why write this?

    And as far as abortions for Ds, the 60-90% termination rate is incorrect. The termination rate is 67% for those women who do test — this leaves a whole group of women willing and wanting to raise children with Ds. There is no extinction of Ds coming … at least in the sense of case-by-case abortion. Research and future applied science technologies is a completely different story. And honestly, who wouldn’t want to give their child a baseline of 46 chromosome chance at life? The only reasons that abortions occur with those pregnancies diagnosed with trisomy 21 is the full array of potential and known multi-disabilities that can entail with variable cognitive, social and behavioral developments — making it a personal life decision for the woman making the choice of termination. The women who do chose to terminate for trisomy 21 don’t think you should have made the same decision; they believe that the choice is individual based on knowledge of what Ds diagnosis brings, the current life circumstances of the family, other siblings with developmental and/or cognitive delays, personal health of the woman and her partner, mental health of the woman, current AND future support system, financial stability, and the age of the woman at the time of prenatal diagnosis to name a few decision factors. Hmmm … this sounds a lot like other reasons that women choose to have an abortion.

    You question the ability to make an abortion based on the chromosomal “extraness” … and you ask how does one make the choice to terminate and on what basis. The choice to terminate and on what basis is the same as other abortions — the mother considers the life of the child, her life and circumstances at that point in time deciding it’s not the best choice (see above).

    The Star Trek analogy compares fiction to real life. I don’t make decisions based on TV shows and theoretical possibilities from cinematic dramas to make my own real life personal decisions. The use of a predominantly male based Star Trek to compare real life painstaking decisions is a huge demeaning slap to women who have make the heartbreaking choice to end a much-wanted pregnancy. When I chose termination for my trisomy 21 pregnancy I considered reality.

    In considering disability as a form of human diversity … disability will always be present in some form or another so there is no real argument that this diversity will always exist. There are millions of people with various disabilities to different degrees throughout the world and people will continue to accommodate and improve situations for those with disabilities — this is an ongoing practice that won’t end. You also encourage us to consider that our existing systems are broken — we’ve been considering this since the inception of the US by the founding fathers — it’s what our country was founded upon. This is not something that isn’t being considered.

    You say that your daughter is valuable just exactly as she is — there is no argument to this. You are her mom. You will always love her no matter what. You say that Maybelle is helping you to begin to imagine and create a different kind of world … I say, no, YOU are helping you. Maybelle is being Maybelle.

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