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  • BIOETHICS FORUM ESSAY

Shotgun Weddings

The New York Times reports that the erroneous abortion of a genetically normal fetus instead of its twin with Down Syndrome has caused an uproar in Italy. What seems to be agitating people, though, is not the magnitude of the mistake that was made (as Wittgenstein once said in another context, “For a mistake, that’s too big”). No, what has everyone up in arms is that the woman, a 38-year-old from Milan in her 18th week of pregnancy, sought to abort her fetus solely because it was disabled. “What happened in this hospital was not a medical abortion but an abortion done for the purposes of eugenics,” fulminated Senator Paola Binetti, a medical doctor and member of the national bioethics committee. The Vatican weighed in as well, attacking the practice of aborting malformed fetuses, and anti-abortion activists joined the chorus of protests.

In the bioethics literature there’s been quite a debate over whether abortion solely on the grounds of disability sends a message to disabled people that they are not welcome in our midst. Susan Wendell, a proponent of the “expressivist” position, writes, “The widespread use of selective abortion to reduce the number of people born with disabilities . . . sends a message to children and adults with disabilities, especially people who have genetic or prenatal disabilities, that ‘we do not want any more like you.’”1 Laura Hershey puts the point even more bluntly: “I believe the choice to abort a disabled fetus represents a rejection of children who have disabilities.”2

On the other side of the debate stands Allen Buchanan, who has argued that if selective abortion for disability were to convey such a negative meaning, it would have to be shown that the women who undergo the procedure and the doctors who perform it are (a) bigoted against people with disabilities, and (b) motivated solely by their bigotry – a pretty tall order, considering that one might just as easily “simply wish to be spared avoidable and serious strains on one’s marriage or on one’s family.”3 James Lindemann Nelson doubts that the meanings of practices and policies are necessarily the ones we consciously intend, but he takes Buchanan’s argument a step further by contending that in the case of prenatal testing and abortion, there aren’t any fixed or settled meanings: abortions, even of disabled fetuses, are not symbols that convey unambiguous semantic content.4

Interesting and important as this discussion is, I’d like here to move us off the expressivist dime and on to a consideration of what in the philosophical literature are called “special obligations.” These are obligations owed to those with whom the agent stands in some sort of special relationship, as opposed to ordinary duties owed to people in general. I, for example, being just an ordinary person whose prowess as a swimmer is limited to a kind of peculiar dog-paddle that keeps me afloat for, oh, say, half a minute or so, do not have any special obligation to risk my life rescuing a stranger who is drowning, but a professional lifeguard is so obligated. Firefighters have special obligations that the rest of us don’t to run into burning buildings on lifesaving missions; police officers must pursue bad guys down dark alleys.

Notice how often these special obligations require those who have them to engage in behavior that imposes a considerable burden on them – behavior that, for the rest of us, would count as saintly (philosophers say “supererogatory”). They bear this burden because they stand in a special relationship to those who look to them for help. The relationship sets up normative expectations, so that if the lifeguard (for example) is too busy flirting with the guy with the six-pack abs to notice the swimmer going down for the third time, he is open to moral censure. The only way he can escape the obligations imposed by the special relationship between him and the swimmers on that particular beach is to exit the relationship.

Mothers too have special obligations arising from a special relationship – in this case, the one that exists between them and their children. (So do fathers, but here I am focusing on mothers.) It’s mothers, not the rest of us, who have to get up in the middle of the night when the baby cries or the ten-year-old has a bad dream; they who have to toilet train and in other ways socialize their children; they who have to spend many thousands of dollars on clothing, feeding, and educating them; they who have to keep them from getting hurt, from running with the wrong crowd in school, from lasting damage or death due to treatable illness and injury. And it’s they who, if their child is disabled, have to give care over and above the care all mothers are already in duty bound to give their young.

The trouble with being a mother is that it puts you in a special relationship you can’t, morally speaking, exit: here, exiting is called abandonment. Unlike a police officer, who might sign up for a three-year stint and then set up as a private investigator, mothers are in it for life. It’s theoretically possible, of course, for a mother to put up her disabled baby for adoption, but disabled babies are not very adoptable, and besides, even if others take over her obligations, she is left with the knowledge that her deeply vulnerable child is out there in the world somewhere without her, and that she has violated – excusably perhaps but violated nevertheless – the normative expectations set up by the mother-child relationship. And however harshly she judges herself, she can be sure that society will judge her even more harshly. Good mothers, according to widely shared moral understandings, simply don’t let their handicapped children languish in foster care for the rest of their lives.

Born children with disabilities do not have a right to my care or your care, or even the lifeguard’s or cop’s or firefighter’s care, but they do have a right to their mothers’ care – a right that is the flip side of the special obligation arising from the relationship between mother and child. Because this care can consume even more of the mother’s time, energy, money, and emotional stamina than would the care of a healthy child, and because many seriously disabled children will never outgrow their need for it, women should not be forced into the special relationship that requires them to provide it. We don’t, after all, force cops to be cops, or lifeguards to be lifeguards. The only time it’s considered legitimate to draft people to take on relationships that generate special obligations is in time of war, when enemy forces present a clear and present danger to the nation.

When the problem of selective abortion for handicapped children is put in terms of eugenics, or sending messages to people with disabilities, or the rights of disabled people to life and care, what is forgotten is who will have to provide the brunt of this care, and why it’s morally obligatory for those particular people to provide it. If everybody sprang up out of the ground full grown, like mushrooms, as Hobbes famously fantasized, then the care of people with disabilities would presumably be impersonally provided, perhaps by a state-run health care system or by private organizations instituted for this purpose. Then it would strike us as not only peculiar but a dreadful rights violation if some people – people with black skin, or people with vaginas – were forced against their will into caring for those in need. But because we take for granted the no-exit character of the mother-child relationship that, in our actual social world, gives rise to special obligations of care, we fail to appreciate how outrageous the suggestion is that women be required to make and maintain those relationships in the first place.

1. Susan Wendell, The Rejected Body (New York: Routledge, 1996), 153.

2. Laura Hershey, “Choosing Disabilities,” Ms. Magazine July/August 1994, 30.

3. Allen Buchanan, “Choosing Who Will Be Disabled: Genetic Intervention and the Morality of Inclusion,” Social Philosophy and Policy 13 (1996): 18-46, at 31.

4. James Lindemann Nelson, Hippocrates’ Maze: Ethical Explorations of the Medical Labyrinth (Lanham, Md.: Rowman & Littlefield, 2003), 25.

 

Readers respond

I was interested to read this article, as a woman who firmly believes in a woman’s right to choose whether or not she continues with a pregnancy, but also as a woman who has a child who has Down syndrome. I understand the case you make that a mother does not have the choice to leave her child, or her position as mother, but you base your case on the misguided assumption that caring for a child who has Down syndrome puts a severe hardship on a mother. As a mother to two children, one typical, one with an extra chromosome, I have to let you know that this assumption is misguided. My experience, and the experience of many of my fellow parents, is that having a child who has Down syndrome is “embarrassingly easy” (to quote a friend). Having our second son has brought my husband and I closer together, and we have not found that bringing him up has caused hardship to our family. He has slept through the night from three weeks of age, developed gradually but constantly, and brought an immense amount of joy to our lives. I have found him different, but no harder to parent, than my son who does not have Down syndrome.

He has had more medical problems than a child who does not have Ds, but nothing that has put an undue strain on me or my husband.

The strains that we have experienced have come from being part of a society that puts more emphasis on preventing people with Down syndrome from being born, than on supporting them to lead independent lives, fully included as part of the community. As fewer children are born, resources are steadily reduced. I am worried that my son will not find a life partner, or even have many friends, as fewer and fewer people with Ds are brought into the world – only two in our province last year.

I am more likely to have to closely parent my son during his adulthood if the supports are not in place to help him live independently – surely this is where the emphasis should be in order to help women like me – rather than on encouraging us to give up our children.

When potential parents are counseled that having a child with a disability will put a severe hardship on their family, they are given misguided information. And please think carefully about the rights of a woman to be given enough information to make a decision that she is certain about. When women are only given information from the medical perspective, and encouraged to have terminations without being able to share the stories of those who actually do the work of parenting children with Ds, they are being denied the right to true choice.

– Alice Evans
Nova Scotia, Canada

Published on: August 30, 2007
Published in: Bioethics, Health and Health Care, Human Reproduction

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