This is just a very cute lil porpoise
What I’m Writing
Blue states are blowing the Covid-19 response, too. We need a national response.
What I’m Reading
What if instead of calling people out, we called them in? (This is my absolute favorite piece this week, if you read nothing else, make it this)
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Two stories are on my mind this week: This one in the Atlantic, The Last Children of Down Syndrome, about how a national program of prenatal testing has has resulted in remarkably few births to children with Down syndrome in Denmark, and this one in the Times, about how American women have been hit particularly hard by the pandemic, almost entirely because of their caregiving duties. Both lay bare one essential truth: When caregiving overwhelmingly falls on women, we see a series of negative consequences — not least among them that social judgments about caregiving, and penalties for being perceived as an inadequate caregiver, overwhelmingly fall on women.
The Atlantic piece has, in particular, been turning over in my head all week. It’s beautifully written and deeply empathetic; Sarah Zhang, its author, goes to great lengths to not frame it as an argument for or against the legal right to abortion, but rather as a look at complex questions of what kinds of children people choose to have when they have the ability to choose, and what we might collectively lose in this calculus. Zhang’s conclusion seems to be that raising a child with Down syndrome is actually often not as dire as many potential parents imagine, and that whatever the individual decision-making process of women who terminate pregnancies after a Down syndrome diagnosis, the outcome — a world that has fewer children with Down syndrome in it — is a worse one. And I think most people would agree that a world with lots of different kinds of people in it is a richer one.
What’s missing, though, is a deeper look at what’s really behind the choice to terminate a Down syndrome pregnancy — and an honest accounting of why this particular issue feels so difficult and sensitive.
The stories of women who ended their pregnancies were clearly tough for Zhang to find, and she says as much in the piece. It’s interesting that, although a large majority of women whose prenatal tests come back showing a high likelihood of Downs end those pregnancies, virtually no women were willing to talk about it on the record. Zhang touches on this, the stigma of not being “the type of person who would choose to have a child with a disability,” when she writes about white women in the 1980s and 1990s who were often the first in their families to work for pay, who often had careers they cared about, who were marrying and having children later, and who were the first women in their maternal lines to, as one researcher puts it, “imagine voluntary limits to their commitments to their children.” When women actually exercise those voluntary lines, though, it’s framed as “selfishness.” Women themselves internalize that framing, and report feeling “guilt, guilt, guilt.”
We’ve moved, a bit, on how reproductive selfishness gets defined. Contraception is more or less acceptable — preventing a pregnancy you don’t want, for whatever reason, is fine. Abortion, though, is treated far differently, and folks especially but certainly not exclusively on the right are obsessed with the reasons a woman has for ending a pregnancy (the reasons seem to range from bad to worse). Someone who terminates simply because she doesn’t feel ready for a child (or another child) at this particular moment in her life — the reason most women have abortions — is selfish in her choice and irresponsible for getting into that predicament in the first place (how it would be better for this apparently selfish, irresponsible woman to be forced into involuntary motherhood is a question that goes largely unanswered). Someone who terminates a previously wanted pregnancy because her fetus is likely to have Down syndrome? She is seen as beyond selfish, having violated, as Zhang puts it, “the ideal of a good mother as one who places no limits on her devotion to her children.”
The rest of the article, though, glosses over why women may place this particular limit on her devotion to her children.
Women are still the primary caregivers for children, whether those women work or not, and whether they have male partners or not. We’ve seen just how significant and imbalanced this burden is during the Covid-fueled recession: With schools and childcare centers closed down, it is overwhelmingly women who have scaled back or dropped out of the workforce. Many of these women will never get their jobs back; many will face life-long economic insecurity stemming from this “choice;” all of them are making these choices in constrained circumstances, some caused by lack of basic social support, and some caused by male partners who simply will not do their fair share. There are 4.5 million fewer women in the workforce now than there were a year ago. A third of unemployed women of childbearing age say that they are not in the workforce because they’re caring for their kids.
It is true that, even under the best of circumstances, “parenting is a plunge into the unknowable and uncontrollable.” But it is also the reality that parenting a child with a disability like Down syndrome comes with some very knowable challenges. Ideally, we would have robust resources on offer, and in some places (like Denmark and even the more liberal parts of the U.S.), the resources are there. But still, navigating the bureaucracy of the educational system, of the healthcare system, or therapists, of estate planning, of figuring out what to do if the usual course of life happens and you die before your adult child does. The people tasked with the physical care of children, and the significant work of advocating for a child the system is not set up for, are overwhelmingly women. In Zhang’s story, I was struck by the fact that nearly every person she interviewed who was the primary caregiver of a child with Down syndrome was female — even in the very feminist Denmark.
While we expect that women will do the bulk of the caregiving, we also give women little in the way of a safety net. Surely Denmark is better than the U.S., but still, women pay a significant price when they forgo paid work for at-home labor. It leaves them financially dependent, usually on male partners, which in turn makes them more susceptible to abuse and exploitation. It means that when these women get divorced — and many do wind up divorced — they are financially vulnerable, and much more likely to wind up living in poverty than either their exes or women who work for pay. And we know that caregiving is gendered: Men, for example, are much likelier than women to divorce a spouse who has cancer — women stay and care for sick husbands; husbands leave sick wives.
And we know that women tend to be better at assessing their own lives than those who are looking in from the outside. The Turnaway Study, a comprehensive comparison of outcomes between women who sought later abortions and were able to get them, and women who sought later abortions and were turned away, tells us a lot. Compared to the women who were legally compelled to give birth, the women who ended their pregnancies were more likely to have gotten out of poverty and less likely to have fallen into it; they were less likely to be in abusive relationships; they were psychologically and emotionally better off. The women who were raising children they hadn’t wanted to birth of course loved their children, and I imagine many would say they couldn’t imagine their lives without them; and yet their lives were less stable and more violent, just as they had feared.
It’s easy to brand a woman “selfish” for worrying that raising a child with special needs may mean a fundamental giving up of life as she knows it — her job, possibly her marriage, possibly her ability to be as full and present a parent as she would like to be for her other children. What kind of mother, after all, would choose any of those things over her child? (We don’t ask these same questions of fathers). But these things — a job, a career, passion, a partnership, time for oneself — have long been on offer for men, including fathers, and are not mere extravagances and indulgences that women have been permitted. They are the things that make up a life.
The feminist writer Katha Pollitt also adds another layer of complication. “The funny thing is, if you could take a pill pre-conception that would prevent you from conceiving a child with DS no one would have a problem with it. After all, pregnant women take folic acid so they won't have a child with spina bifida,” she tweeted. “Nobody says spina bifida is just a variation in the wonderful tapestry of life and it will be a sad day when no such children are born and a slippery slope on the way to designer babies. As a society and individually, we do a lot to have healthy children who are not disabled. But if the problem with aborting a DS fetus is that it leads to far fewer such children, the effect is the same as if there was a pill to prevent the chromosomal variation that causes DS.”
Does the worth and dignity of people with disabilities hinge on the argument that we have falsely and unfairly deemed some characteristics more desirable than others? Do we have, as Fredrik deBoer argues in his book, “a cult of smart” that has “created and perpetuated an unjust class structure based on intellectual ability”? Is the entire concept of “health” itself an ableist one? (For the record, I don’t think so).
And finally, there is the biggest and most difficult question, which is: What happens after I die? Of course nothing is guaranteed. Of course any child can struggle. Of course some adults with Down syndrome do live independently. But many do not, and the average person with Down syndrome lives to be 60. That, too, is a tremendous burden on a parent, to bring a child into the world without knowing how that child will be cared for after you’re gone — to know that we do lack the structures to fully care for adults with special needs, to know that a beloved child could wind up institutionalized or living in circumstances you would never choose but that are wholly out of your control. If this were a situation I were facing, “what happens when I’m gone?” is this question that would be at the top of my mind. And it might be a question with an answer so devastating I would take affirmative steps to avoid facing it.
All of which is to say: It’s very easy to talk about women making a “choice,” or women being selfish for what they choose. The reality of what these “choices” that often don’t feel like choices at all actually mean for women and their families are much more complex, as are the thornier moral questions here.
It may be the case that while there is tremendous overlap, there may also simply be some areas of tension between the disability rights movement and the feminist movement. The solution you often hear from both sides — one I’ve also posited — is “more support.” Better healthcare, better education systems, more robust support all around so that caring for children generally, and children with disabilities in particular, isn’t so incredibly individualized, and doesn’t require so much work and so much sacrifice from individual parents. The thing is, though, that Denmark has many of these ideal systems in place. And yet.
The stubborn reality is that much of this does come down to discomfort with women choosing something other than sacrificing themselves for their children — and especially discomfort with abortion. As Katha argued, we don’t hand-wring over women taking folic acid to prevent certain disabilities; I have to imagine we wouldn’t be all that worried if we were preventing the fertilization of an egg with a chromosomal issue. Some 80 percent of pregnancies where the embryo or fetus has a third 21 chromosome — the issue that causes Down syndrome — end in miscarriage. If you’re generally anti-abortion, then it makes sense to judge women who end pregnancies because of a high Down syndrome risk (it makes far less sense to show no concern for the many embryos that are naturally expelled from women’s bodies, but that’s a discussion for another day). But if you’re not legally or morally opposed to abortion, it is worth asking why this particular issue is cause for such concern, if it’s not wrapped up in deep assumptions about abortion, womanhood, and maternal obligation. It’s certainly worth asking why the supposedly “pro-life” folks who want to force women to birth children against their will and try to ban “disability-selective abortions” are also willing to argue that people with disabilities should not have the right to make decisions about their own health, which includes the right to bear and parent their own children (here is some required reading on that important topic).
This conversation might be different if women weren’t the ones doing the majority of the world’s care work. It would certainly be different if women weren’t the ones doing close to 100% of the world’s childbearing. But with the world as it is, and with how slowly norms around caregiving and gendered work actually change, the people who bear and care for children shouldn’t also be shouldered with carrying the heaviest of our moral questions.
xx Jill