To what, precisely, is abortion a right?
Considering the disproportionate time it has spent as a central issue in American public discourse over the last half-century, the amount of confusion surrounding this topicfrom bioethics journals to dinner tablesis extraordinary. Indeed, the confusion is so severe that, much of the time, those who imagine they are discussing the same topic in fact have in mind very different kinds of acts.
Some of that confusion comes from intentional obfuscationwhen pro-life activists intentionally downplay the health risks of pregnancy, for example, or when pro-choice activists intentionally mischaracterize the development of the prenatal heart. But thats not what I have in mind here. No, the confusion that Im addressing in this article is a genuine one, coming out of two sincerely heldbut very differentunderstandings of the right to abortion. One imagines it as the right to bodily autonomy while another understands it is the right to reproductive autonomy.
My thesis in this article is that how we treat imperiled newbornsnot only after a failed abortion attempt, but also in a more traditional NICU (neonatal intensive care unit) settingis essential for fully grasping (and critiquing) the currently dominant understanding of the right to abortion. Furthermore, especially when we examine the central role ableism plays across both sets of issues, thinking about them together provides an anti-ableist critique that has important implications for both OB-GYNs and neonatologistsfor both prenatal and neonatal justice.
Two Rival Understandings
Judith Jarvis Thomsons abortion essay using the famous violinist analogy has become so ubiquitous that it is now a bit of a clich to call it the most famous article on abortion ever written. The argument is very familiar, but here it is in brief. Imagine that a famous violinist is attached to your body, dependent on you to continue living. Because abortion is analogous to removing the famous violinist from ones body, and the right to bodily autonomy means it is obvious that one need not stay attached to the famous violinist, the right to bodily autonomy means it is also obvious that one need not stay attached to the prenatal childwhich Thomson grants (at least for the sake of argument) is a human being.
Here we have the classic case for bodily autonomy and privacy, the framework that dominated the 1973 Supreme Court decision Roe v. Wade, and is still quite present in major parts of the abortion discourse in the United States. Slogans like Her Body, Her Choice! are still common rallying cries among activists. At the time these arguments were being developed, appeals to reproductive autonomy were not as common. Thomson, for instance, doesnt even attempt to make an argument (her awkward appeal to people seeds notwithstanding) that actually reflects how human reproduction works. Thats because reproductive autonomy is not Thomsons concern. Nor was it a concern of Justice Blackmun (much to the chagrin of Ruth Bader Ginsburg), or most of the dominant abortion-rights activists and thinkers during the 1970s and 1980s.
This would change, however. As more feminist-centered approaches came into prominence over the next decade or two, appeals to reproductive autonomy gained steam. They really hit their stride after the 1992 Supreme Court decision Planned Parenthood v. Casey, which explicitly argued:
For two decades of economic and social developments, people have organized intimate relationships and made choices that define their views of themselves and their places in society, in reliance on the availability of abortion in the event that contraception should fail. The ability of women to participate equally in the economic and social life of the nation has been facilitated by their ability to control their reproductive lives.
Here, the right to abortion is understood as part of what is necessary to control reproduction, which is seen as necessary for the economic and social equality of women. Clearly, by 1992, the reproductive autonomy argument had arrived in earnest. And yet there was still a hangover from the argument in Roe and other arguments coming from bodily-autonomy-centered feminists.
For instance, Casey and many other pro-abortion arguments still kept fetal viability in front of mind when it came to thinking about thresholds for limiting abortion rights. Such a threshold is relevant if one is thinking about bodily autonomy: Viable fetuses no longer need the womans body in a way that is analogous to the way the famous violinist needs anothers body. But if a womans right to abortion is based on her right to reproductive autonomy, then it isnt at all clear why fetal viability should be a bright red line for abortion rights. Indeed, it isnt clear why birth should be a bright red line either.
Pushing Reproductive Autonomy to Its Limits
The now two-decades-old debate over bans of so-called partial-birth abortiona procedure in which the baby is partially delivered and has the contents of her skull evacuatedwas a classic example of pushing on the bright line of birth. A floor debate between Senator Rick Santorum (R-PA) and Senator Barbara Boxer (D-CA) was revealing in this regard. Senator Santorum pushed Senator Boxer several times to give a precise account of when a baby was born and had full rights under the Constitution. He asked her directly: if the babys toe was still inside her mothers body, would that still be enough to put the childs life at risk?
Significantly, Boxer refused to give a clear answer to this question and other similar questions. And she did so despite the fact that naming the bright line precisely was at the center of the debate. After all, a baby killed via partial-birth abortion only has part of her head still inside her mother. Someone who thinks that is a relevant difference should give an account of what that is. Though the culture at large wasnt quite ready to go full reproductive autonomy at this point (including after birth) Senator Boxer alluded to this view when she gave the following response:
SANTORUM: But I would like to ask you this questionyou agree, once the child is born, separated from the mother, that that child is protected by the Constitution and cannot be killed? Do you agree with that?
BOXER: I would make this statement, that this Constitution as it currently issome want to amend it to say life begins at conception. I think when you bring your baby home [emphasis mine], when your baby is bornand there is no such thing as partial-birththe baby belongs to your family and has the rights.
This wasnt a slip of the tongue or the use of one or two words that were poorly chosen. Somewhere in Senator Boxers mind there was a distinction between birth understood as (1) mere separation from the body of the mother and (2) consent to take care of the child and take her into ones home.
A skeptic might wonder if this is just one view of one U.S. senator twenty years ago and therefore has only questionable relevance for my thesis in this article. But unfortunately, this kind of mindset about reproductive autonomy has done nothing but gain traction, at least in the developed West. This is especially true when we consider reproductive autonomy related to a babys disability.
We will see below that this issue is relevant to how we think about treating imperiled newborns in the NICU. Before we go there, consider this recent case from New Zealand: a mother was told by her physician that her baby likely had spina bifida and that she and her colleagues agreed the child would have no quality of life. Their recommendation was that the mother should have an abortion. Unfortunately, especially for those who wish to resist ableist judgements, this is all too common. But what happened next was quite revealing about the version of reproductive autonomy in play: when the mother revealed that she had no intention of having an abortion, her physician said that they could aim at the death of the child after birth. Here is how the mother narrated it:
When I let her know I had other plans, [the doctor] suggested that since I didnt want to terminate, I could wait until my son was born. If his disability was too severe she said I could choose to withhold treatment and let him die naturally then.
This obviously has nothing to do with a right to bodily autonomy, but rather with a right not to have a baby with a disability that is too severeeven after birth. In this case, the aim of the act in both the abortion and the refusal to treat was the same: aiming at the death of a child because of her disability. To follow the logic consistently here, in this context, the right to an abortion is the right to a dead baby. Again: this not a mere right to bodily autonomy, and there is no distinction made between the moral status of the prenatal human being and that of the neonatal human being.
The case of spina bifida is especially instructive, because it demonstrates how what happens after birth can be connected, morally speaking, to what is going on before birth. In the Netherlands, for instance, a neonatal euthanasia program called the Groningen Protocol at first had a considerable number of killings aimed at medically stable newborns with spina bifida. But as time wore on, the founder of the protocol, Eduard Verhagen, proudly reported that there was no slippery slope toward newborn killing, as some had suggested and feared. Instead, more and more physicians and families were turning to killing children with spina bifida before birth. Again, the aim of the act in both cases is the samethe death of a child because of her unacceptable disability.
Born Alive after a Failed Abortion
The connection between treatment of newborns and abortion was also on display when New York passed its Reproductive Health Act in January of 2019. Before the law was passed, this is what New York Public Health Law Section 4164 stipulated:
When an abortion is to be performed after the twentieth week of pregnancy, a physician other than the physician performing the abortion shall be in attendance to take control of and to provide immediate medical care for any live birth that is the result of the abortion. The commissioner of health is authorized to promulgate rules and regulations to insure the health and safety of the mother and the viable child, in such instances. Such child shall be accorded immediate legal protection under the laws of the state of New York, including but not limited to applicable provisions of the social services law, article five of the civil rights law and the penal law. The medical records of all life-sustaining efforts put forth for such a live aborted birth, their failure or success, shall be kept by attending physician.
Significantly, the Reproductive Health Act repealed this New York public health law and removed this layer of protection for babies born alive after a failed abortion. By insisting that a physician be present who didnt have the same aim as the physician doing the abortion, Section 4146 made a clear distinction between abortion as a right to bodily autonomy and abortion as the right to reproductive autonomy. The Reproductive Health Actbuoyed by an increasing sense that abortion is about reproductive autonomywas at pains to make sure the second physician was not present.
Significantly, recent debates over federal legislation similar to Section 4146 have been met with resistance by activists and legislators supportive of abortion rights. They argue that the law already protects these newborns and thus they do not need an extra layer of protection. One might find this a surprising reactionespecially coming from progressive activists who, in other cases, are deeply skeptical of the cultures ability to protect disabled children and are normally very interested in increasing governments role in protecting them. But it becomes easier to understand if one thinks about the right to abortion as a right to reproductive autonomywhich, in practice, is often the right to make sure a disabled baby does not survive.
How often does a baby survive an abortion attempt? There is disagreement about the actual numbers involved, but they dont seem to be trivial. The journalContraceptionestimates that up to 50 percent of labor induction abortions without digoxin can result in babies born alive. Despite what one might imagine are problems with gathering good data (obviously there are disincentives to reporting such cases), there are a few government entities that try to do so. Queensland, Australia, for instance, reports that about thirty babies survive abortion attempts each year. A few U.S. states keep track of the number of babies born alive after a botched abortion as well. The state of Minnesota, for example, reported three instances in 2018. If this is typical, then there are somewhere in the neighborhood of 150 cases each year in the United States.
Furthermore, a number of abortions sought at the postviability stage are directly related to a concern about the childs disability. My wife and I had our charmingly named genetic consult at twenty weeks gestation for little Thaddeus, and this was the standard for our hospital. For parents who choose to have an abortion just a couple weeks after such a meeting (sometimes after badgering from various members of their medical team), there is a good chance their child would be viable after a botched abortion.
Treatment Decisions for Disabled Newborns in a Non-Abortion Context
What do we do when a mother (or other parent or family) asks that a child not be resuscitated, treated, or cared for in a non-abortion context? The answer to this question also reveals much about how we think about the central issue of this article. Thankfully, because they are disassociated from toxic political and policy questions surrounding abortion, the available data on this question are much clearer.
First, it is worth pausing for a moment to briefly situate the medical profession in relation to disability. The British neonatologist and researcher John Wyatt found that physicians consistently rate the quality of life of their disabled patients worse than the patients themselves do. Something similar has been found withrespect to disabled or sick adolescents and their families. Disability bias present in CPR providers leads some to consider their patients as socially dead and therefore unworthy of being saved. Neonatologists often think that babies born with severe disabilities have fates worse than death. And when confronted with the fact that patients generally prefer length of life to quality of life, physicians might feel surprised and admit we think we know what is best for a patient, but this is often wrong.
We must keep this ableist mindset squarely in mind when we think about how treatment and care decisions are made for disabled newborns. This is especially true when physicians are asked to make judgments about what would constitute profound disability or unacceptably severe morbidity. Such categories are wide open to subjective interpretation based on differing foundational values and philosophical and theological visions of the good.
John Lantos, an eminent bioethicist and neonatologist at the University of MissouriKansas City School of Medicine, points out that disagreements between parents and neonatologists about treatment decisions are not uncommon and usually come down to questions about the value of life with severe physical or cognitive impairments. Furthermore, though neonatologists say they want shared decision-making with parents, Lantos notes that in fact they do not practice it, and few allow the parents preferences to prevail when there is a conflict. Furthermore, even when shared decision-making is practiced, the power and knowledge imbalance very often means that the facts are framed (via choice architecture) by the physicians background values, biasing the discussion toward her point of view.
Despite the ableist biases still in play, Lantos notes that changes in societal attitudes toward people with disabilities have contributed to some changes in clinical practice. Indeed, he notes that back in the 1970s surgery for correctable anatomical malformations in babies with trisomy 21 [Down syndrome] used to be within the zone of parental discretion and only a small minority of doctors would have sought protective custody to operate on a baby with Downs syndrome. Similarly, treatment of babies with Trisomy 18 used to be considered futile, but now has moved to the zone of parental discretion.
Lantos also notes that parents are more accepting of disabilities than are physicians, which offers hope that the medical community will continue to grow out of its ableism. Especially important for this process is the challenge physicians and ethicists like Cummings, Mercurio, and Paris offer to physicians in this context: Engage in consistent and extended communication over time, foreground all values in play and talk openly about ones biases, and commit to building trust. This culture of encounter, if pursued authentically, could push physicians still further along the path of justice for persons with disabilities.
Unfortunately, even these kinds of laudable frameworks for navigating conflicts in decision-making between parents and physicians will leave huge problems with ableism unresolved. Lantos points out that with increased prenatal detection of disability, many parents who dont want such a child will have an abortion. As a result, when such children do make it to birth, a higher proportion of their parents will ask for treatment, which neonatologists may not want to give. (Id also add that it may result in more disabled children born alive after a botched abortion.) But what happens when parents have an ableist bias about the childs quality of life? As Lantos points out, a commitment to shared decision-making does not mean that any decision is ethically defensible. At times, a treatment decision will need to be imposed on parents who are aiming at the death of their disabled children.
Cummings, Mercurio, and Paris helpfully cite the American Academy of Pediatrics guidelines for Nonintervention or Withdrawal of Intensive Care for High Risk Newborns this way:
As noted above, concepts like unacceptably severe morbidity are subjective, but with a justice-centered, anti-ableist lens they can be more helpful. With such a lens, almost no cases would be thrust into the first category and many more cases would be put into the second. Instead of capitulating to the ableist view that fellow human beings with Down syndrome, spina bifida, Trisomy 18, etc. have unacceptably severe morbidities, we would welcome them as full and equal members of the human family. It is already the case, as Mercurio and Cummings point out, that in certain circumstances treatment of newborns is considered obligatory and will be provided even when ableist parents insist that the baby be left to die. As part of our cultures growing resistance to ableism, however, medical teams must be significantly more aggressive in imposing such treatment on parents who want to aim at the death of their child because of her disability.
Consequences for Ableist Judgments That Aim at Death?
But suppose a physician does not follow this path? What if, instead, she either cooperates with the parents or imposes on the parents (directly or indirectly, via choice architecture based on her particular background beliefs) a treatment decision that aims at the death of a child because of her disability? What should the consequences be for such an act?
Before discussing this, let us be clear about the moral analysis. Not all refusal to aid a newborn child is aiming at death. Some might be attempts to do something else (like removing overly burdensome treatment), with death as a foreseen and unintended consequence. For instance, one might forgo painful chemotherapy or chest compressionsand be absolutely delighted that the child, against all odds, survives. That delight is a clear indicator that one was not aiming at death.
Some forgoing or cessation of treatment, however, is in fact aiming at death. If one comes to the conclusion that it is better that a child die because of her disability, and one removes a ventilator with that aim in mind, and the child, against all odds, starts breathing on her own and survives, then one is surely not delighted, for the goal was to end up with a dead child. This, in fact, was precisely the kind of situation presented by the famous Baby Doe case in which the parents, on advice from their physicians, refused to have a common and safe surgery to repair esophageal atresia because their child had Down syndrome.
The fact that everyone knew that this was aiming at the death of a child because of her disability sent shockwaves throughout the United States in the early 1980s. Pro-lifers and disability rights activists teamed up with the Reagan administration to enact HHS regulations and pass federal laws to protect disabled children like Baby Doe. Under the Child Abuse Amendments of 1984, cases of refusal of treatment of a newborn go to a review board and possibly to state protective services. If a medical team today worked with parents to aim at the death of an infant with Down syndrome in this way, they could be held accountable under child abuse and negligence statues.
Id add that in our current moment, which gives particular legal attention to disabled populations as a protected class, there could be more legal liability for medical teams who engage in grossly ableist and abusive behavior toward children with Down syndrome. Under federal law, which as of 2009 includes the disabled as a protected class, someone who engaged in child abuse because of a childs disability could be charged with a federal (and state) hate crime as well. And of course it wouldnt just be children with Down syndrome that are legally protected from this kind of child abuse: aiming at the death of children with disabilities related to spina bifida, Trisomy 18, and many other conditions would also be prohibited.
Saving vs. Creating and Reconnecting to Abortion
Why hasnt this kind of moral and legal analysis caught on in neonatal bioethics and clinical ethics circles? Janvier and Mercurio offer us a fascinating insight that may help explain what is going on here. They present two casesone about a preterm (born at twenty-four weeks gestation) newborn named Catherine and one about a previously healthy two-month-old baby named Sam. Both meet with severe health problems, and both have about the same potential for long-term disabilitythough Sam actually has a lower chance of survival. Their research found that in many hospitals in the U.S., Canada, and elsewhere, intensive care treatment would be initiated routinely for Sam, but considered optional for Catherine. This despite not only Catherines better chance of survival, but the fact that most ethical guidelines (from the American Academy of Pediatrics to the Nuffield Council on Bioethics) insist that the ethical principles for treating newborn children are no different from those for treating older children and adults.
The reason for this, Janvier and Mercurio suggest, is because preterm babies lack the interpersonal attachment that older babies and children have, and health care providers may not consider them to have the same personhood as older infants who went home. Because of this distinction, the authors suggest that providers may think of themselves as saving Sam, who now has a disability, while they are creating a person with a disability if they successfully treat Catherine. If true, this insight would certainly help explain why a clinical and bioethical culture would react with horror to what happened to Baby Doeand to withdrawing or withholding vital treatment of older disabled children because of their disabilitybut have a different view of the very same judgments and actions happening in the neonatal intensive care unit.
This distinction between saving and creating is obviously deeply problematic. Newborn children are fellow human beings and must have full legal protections and supports enjoyed by older children. But Janvier and Mercurios insight helps us make the connection back to abortion. Philosophers like Peter Singer, Michael Tooley, and others are correct in noting that, if we do not consider the human fetus a person, then we cannot see the newborn infant as a person either. Both are fellow members of the species Homo sapiens, but if we are to avoid speciesism we must insist not on common humanity but rather on morally relevant traits like rationality, self-awareness, and interpersonal relationships. The case of Catherine above is particularly instructive for their position: born at twenty-four weeks gestation, she is actually less developed than many prenatal human beings when it comes to morally relevant traits like these.
But if we reject the position offered by Singer, Tooley, and those making the saving vs. creating distinctionif we insist that neonatal human beings deserve legal protection from having their deaths aimed at because of their disabilitythen we must also insist that prenatal human beings deserve legal protection from having their deaths aimed at because of their disability. And this means rejecting the idea that the right to abortion is the right to reproductive autonomy. The right to abortion as it existed under Roe was the right to bodily autonomynot the right to a dead baby. It is of course deeply wrong to refuse to aid a disabled child after a botched abortion because one doesnt want the disabled child to survive, but it was just as wrong to aim at the death of the prenatal child in the first place.
One might object with an appeal to moral status here, arguing that there is a morally relevant difference between a prenatal child and neonatal child. But the fact that we are making special space for nontreatment of neonates after botched abortions (recall the discussion of New Yorks Reproductive Health Act above and the repeal of the two-physician requirement)and for nontreatment of neonates that we dont allow for older childrenmeans that we dont think of the neonate as having a special status that would overrule reproductive autonomy. The corrective here is to treat all fellow members of the human family (prenatal, neonatal, and older) with radical moral and legal equality.
Disability and Prenatal Justice
The state of Ohio recently passed a law protecting prenatal human beings with Down syndrome from being killed via abortion because of their disability. The law was upheld in April of 2021 by the Sixth Circuit Court of Appeals as not creating a substantial obstacle to a womans ability to choose or obtain an abortion. Judge Alice Batchelder wrote the lead opinion, which argued that the State of Ohio has a legitimate interest in protecting the Down syndrome community, keeping doctors from becoming witting participants in Down-syndrome-selective abortions, and ensuring that women are not coerced by the medical teams.
Women and families face incredibly pervasiveand coercivepressure to have an abortion when their prenatal child is thought to have Down syndrome. One research project focused on the lasting, traumatic flashbulb memories that women report as a result of negative experiences with medical staff, including a lack of compassion, pressure to terminate their pregnancy, and pessimistic expectations about outcomes for their child and family.
For a specific example, consider the case of Lorraine, who was pregnant at the age of forty-five with a boy she had already named Jaxson. As reported by the BBC, Lorraine agreed to have an extra screening and blood test, not because she and her husband would have an abortion, but because her midwife said they would get longer to see Jaxson on the ultrasound screen. The sonographer told the parents that the baby showed signs of having Down syndrome and suggested that they get more testing via amniocentesis, a test that slightly increases the chance of miscarriage. Partly because Lorraine had lost a baby the previous year, but also because she would never have the abortion, she refused the extra test. The sonographer became very aggressive and said women like you make me sick. Why bother having a screening at all if youre not going to do anything about it?
The same BBC story told the story of Emma, who was offered 15 terminations, even though we made it really clear that it wasnt an option for us. . . . [T]hey really seemed to push and really seemed to want us to terminate. Her medical team made a point of saying she could have the abortion very, very late in her pregnancy. I was told that until my baby had started traveling down the birth canal, I could still terminate, Emma said.
Significantly, the UK doesnt allow normal prenatal children to be killed that late in pregnancy. This fact led a twenty-six-year-old British woman with Down syndrome named Heidi Crowter to sue the UKs Department of Health and Social Care, arguing that a provision that makes it legal to kill people like her up until birth is an obvious example of wrongful discrimination on the basis of disability. Though a UK court justruled against her, it should be clear from the above arguments that her position was the correct one.
Happily, Ohio currently does a much better job of defending prenatal justice for disabled children. Their law says:
No person shall purposely perform or induce or attempt to perform or induce an abortion on a pregnant woman if the person has knowledge that the pregnant woman is seeking the abortion, in whole or in part, because of any of the following:
(1) A test result indicating Down syndrome in an unborn child;
(2) A prenatal diagnosis of Down syndrome in an unborn child;
(3) Any other reason to believe that an unborn child has Down syndrome.
Furthermore, anyone found to violate this law in Ohio is guilty of a felony of the fourth degreewhich means that the state medical board shall revoke a physicians license to practice medicine in this state and he or she will be liable in a civil action for compensatory and exemplary damages and reasonable attorneys fees. Good on Ohio for defending the rights of the disabled.
There is a whole separate debate to be had about the right to abortion understood as the right to bodily autonomy. (At the heart of that debate, incidentally, is the invocation of viabilityan ever-shifting concept that, as Lantos points out, has increased dramatically for babies at twenty-two and twenty-three weeks gestationand will shift even more dramatically with the development of artificial wombs.) But what I have shown in this article is that the deeply ableist problems with (non)treatment of newborn infants are logically, morally, and sometimes clinically connected to deeply ableist problems with abortion being understood as reproductive autonomy.
Matters of Public Policy: the Maryland and California Bills
Im quite sensitive to the critique that professorsand especially bioethicistscan often take dramatic speculation into the realm of the utterly implausible. Especially because of the great evil being discussed in this article, one might think that Ive cherry-picked a few stories or authors to make my argument. But supporters of two billsone in Maryland and one in Californiaare moving explicitly to defend aiming at the death of newborns by omission, in precisely the ways Ive described.
The Maryland bill, for instance, would eviscerate any penalty for aiming at the death of a newborn child by omission for up to twenty-eight days after birth:
This section may not be construed to authorizeany form of investigation or penaltyfor a person: (1) Terminating or attempting to terminate the persons own pregnancy; or (2) Experiencing a miscarriage, perinatal deathrelated to a failure to act, or stillbirth [emphasis mine].
Interestingly, the language in the California bill uses many of the concepts I have invoked in this article, though it oddly connects the right to refuse to treat a newborn human being to the right to privacy:
The Legislature finds and declares that every individual possesses afundamental right of privacy with respect to personal reproductive decisions, which entails the right to make and effectuate decisionsabout all matters relating to pregnancy, including prenatal care, childbirth, postpartum care, contraception, sterilization, abortion care, miscarriage management, and infertility care.
Because of this finding, the bill would mandate that there could be no civil or criminal charges filed for actions or omissions that result in miscarriage, stillbirth, abortion, or perinatal death.
These proposed laws notwithstanding, there is no right (of privacy or otherwise) to a dead baby. Indeed, the idea is especially heinous if, as is too often the case, one seeks her death because one finds her disability unacceptable. This not only means resisting the kinds of laws being proposed in Maryland and California; it means refusing to distinguish between the equal justice under law owed to both neonatal and prenatal human beings.
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The Right to a Dead Baby? Abortion, Ableism, and the Question of Autonomy - Public Discourse
