Abstract

Although I self-identify as pro-choice, I do believe certain instances of abortion can be classified as, in Judith Jarvis Thomson's words, indecent. This paper explores one such case and uses it as a lens for a wider discussion on the moral dimensions of aborting due to fetal disability. Using virtue ethics as my foundational framework, I argue that while some cases of aborting due to fetal disability need not manifest vicious character traits, some very well may. In particular, I am concerned with cases where fetuses that had been thus far welcomed and loved by their respective community are suddenly regarded as candidates for abortion simply because they may have been diagnosed with a disability. That is, I am worried about cases where disability is deemed sufficient grounds for dehumanizing a being who had been, up until that point, embraced.


Introduction

The motivation for writing this essay came from a personal experience that occurred about four years ago. A woman I know, whom I shall call Jackie, called me in tears to let me know that her quad screen test indicated that her fetus, who had been named Madison, was at a higher risk for Down syndrome. Jackie already had one child, was also helping to raise her stepdaughter, and was the sole financial provider for a family that was already struggling. The prospect of having to care for a child with a disability was daunting and utterly terrifying. "What should I do?" she asked me in between sobs. I told her she needed to sit down and discuss the situation with her husband, and other pertinent members of her family. They needed to honestly assess their ability to care for a disabled child, and decide from there what to do about the pregnancy. She asked me what I thought she should do, and I reiterated that no one was qualified to make this choice but her and her husband, but that, if she chose to keep the baby, I would try my best to help her every step of the way. The sobbing increased when she revealed that she had consulted with others in the hopes that they would express support if she continued the pregnancy. She wanted to keep this child, but did not think she could do so without the emotional, financial, and mental support she was going to need. But besides her mother and me, no one had given her this support. Quite the contrary, the suggestion of abortion was proposed as the clear route to take: "You're going to abort it right"? "Jackie, it's not worth having it." "Your life is too hard now." "You can just abort it and try again." "You can always try for a normal child." This is the same being that, just two weeks prior, had been embraced by Jackie's family and friends with a small baby shower. Gifts had been bought. A name had been picked. Engraved blankets and plaques for the bedroom had been created. The fetus had, socially at least, become a person — no longer pregnancy number two, she was now baby Madison. But now, at the mere prospect of being diagnosed with Down syndrome, Madison was stripped of her ascriptive personhood and had become an abort-able, easily replaceable, fetus.

It is not so much the possibility of abortion that filled me with such indignation concerning the advice Jackie was given. As a pro-choice advocate, I believe women have a right to decide if they wish to use their body to sustain the life of a human fetus. The right to an abortion is a subset of the broader right to bodily autonomy, a right that we all possess; for no person can be forced to use their body to sustain the life of another. Of course, like many people, I find the idea of later-term abortion troubling, to say the least, and I consequently support almost unfettered access to early abortion in order to prevent later-term ones. Insofar as aborting a fetus because it may have a disability, the severity of the disability must be taken into account, and the effect it will have on the child's quality of life. Moreover, we must also consider the extent to which parents are able to care for a disabled child. These two considerations will be further explored below. But what horrified and angered me was not so much that Jackie was considering an abortion, rather it was how abortion was touted as the obvious choice to make in this case; how disposable a fetus with Down syndrome had become. This is a phenomena that, according to Marsha Saxton, is quite common once a prenatal screening comes back positive for disability: "[f]etuses that are wanted are called 'babies.' Prenatal screening results can turn a 'wanted baby' into an 'unwanted fetus.'"1

Why virtue ethics is important

Being a philosopher, in particular an ethicist, I cannot help but to try to work through my feelings and reactions through the lens of my profession. Moreover, given that I self-identify as pro-choice, I had to ask myself why I was so troubled by abortion in this particular instance. Indeed, the push to legalize abortion in twentieth century America came as a result of the thalidomide scare in the 1960s, when several babies were born disfigured after their mothers were prescribed the drug for anti-nausea purposes. It is the fear of disability that pushed the legalization of abortion back into the spotlight.

I have spent the past ten years of my life deeply entrenched in the abortion issue. I have researched it from many possible angles: philosophical, theological, psychological, historical, medical, sociological, amongst many others. I have forced myself to view pictures of aborted fetuses and women dead from illegal abortions. I have published articles on the issue, and have interviewed women who have obtained abortions. And there are three things that I have concluded from all these years of study: (1) prohibiting abortion (including abortions for eugenic reasons) will do little to curtail their occurrence, (2) women have a moral right to decide whether they will use their own body, in an incredibly invasive and intimate manner, to support the life of another human being, and (3) affirming the existence of this right in no way ends the debate about the moral dimensions of abortion choice. Fetuses matter. They aren't globs of tissue that can be disposed without a second thought; they are nascent human lives (though we can debate whether fetuses are persons, it is clear that they are living members of the species Homo sapiens). And, like in all cases where human life stands to be extinguished, we must proceed with great conscientiousness. Because of this, it is imperative that, when women do abort, they do so with great care and concern for their own lives, the lives of others, and even the life that grows within them. This applies to all instances of abortion choice, including aborting a fetus that tests positive for a disability.

In their article "Feminism, Abortion, and Disability: Irreconcilable Differences?" Keith Sharp and Sarah Earle argue that "a fundamental and irreconcilable conflict inevitably remains" between pro-choice advocates and disability rights advocates.2 According to them, because pro-choice advocates hold steadfast to the position that women ought to have unfettered access to abortion, indeed that they have a moral and constitutional right to it, they cannot consistently hold that certain kinds of abortions should be prohibited. They write: "[i]f reasons for the abortion were held to be relevant in determining whether or not she should be permitted one, then we could not say that she had a right to one."3 Moreover, Sharp and Earle argue that pro-choice advocates cannot even entertain a discussion concerning whether there are "better" or "worse" reasons for obtaining abortions because "[w]e could not say that even though two women have an equal right to have an abortion, we consider one to be more ethically justified in doing so than the other."4 That is, if women have a right to an abortion, then that right cannot be violated on the grounds that some people may find certain reasons for obtaining an abortion problematic — not any more than we can deprive someone of their constitutionally protected right to free speech if they choose to say something deeply offensive.5

Disability rights advocates, on the other hand, object to abortion on the grounds of fetal impairment because they believe it facilitates a prejudicial attitude against the disabled. As such, "their quarrel is not with abortion per se, but with the specific case of abortion on the grounds of impairment."6 Consequently, they often seek to curtail abortion access when the reason for terminating the pregnancy is due to fetal disability. Therefore, according to Sharp and Earle, a fundamental tension exists between pro-choice advocates, who object to any limitation on the right to choose abortion, and disability rights advocates, who often seek to enact at least one limitation on abortion choice.

If Sharp and Earle are correct, my negative reaction against the reasons Jackie was given in favor of aborting Madison is inconsistent with my pro-choice stance. While I can believe that such reasons are distasteful and problematic, I cannot use this as a reason to restrict abortion access, nor can I pass moral judgment on such motivations, indeed on any motivation, for choosing abortion. Sharp and Earle's argument, however, is unsuccessful. First, it is not the case that rights come without limitations. As Sharp and Earle noted, our right to free speech cannot be curtailed because someone finds what we say offensive, but it can be circumscribed in an attempt to prevent harm to others, e.g., there are laws against slander. While I may have a constitutional right to bear arms, there are certain places where I cannot bring a weapon, such as in a classroom. Nevertheless, for the sake of argument, I will grant that the right to an abortion cannot be restricted on the grounds of motivation, especially since such a constraint would be impossible to successfully implement given that people can very easily lie about their motivations.

It does not follow from this, however, that I cannot pass moral judgment on how individuals choose to exercise their rights. Members of the Westboro Baptist Church are recognized for their abhorrent hate speech, protesting the funerals of fallen soldiers and victims of national tragedies with signs condemning homosexuality. Their speech is not just distasteful, but vile and fueled by an immense hate. While they are perfectly within their rights to practice such speech, they are typically morally condemned by most individuals who encounter them. Constitutionally protected hate speech is hate speech nonetheless, and it seems perfectly appropriate to pass moral judgment on individuals who choose to use their rights in this way. There are good and bad, virtuous and vicious, ways of exercising rights. Just because people have a right to do something does not mean that they escape moral judgment when they use that right in questionable or dubious ways.

Judith Jarvis Thomson's "A Defense of Abortion" is perhaps one of the most seminal works in abortion rights literature. In her article, she argues that, in terms of maintaining a pro-abortion-rights stance, it matters not whether the fetus is regarded as a person with rights equal to that of any extra-uterine person. Because no person's moral (or legal) right to life entails that another person can be compelled to use her body as sustenance, even for life itself, the fetus cannot be given this right over the woman either. Although Thomson's argument has been met with a plethora of criticism,7 her core thesis has been reflected in many aspects of U.S. law and policy. Most notably there is the 1978 case of McFall v. Shimp, where a dying man (Robert McFall) was denied access to his cousin's (David Shimp) bone marrow, even though he would die without the transplant. The Tenth Pennsylvania District Court ruled that they could not compel one human being to give his body for the sustenance of another human being because to do so would "defeat the sanctity of the individual."8 The McFall v. Shimp case illustrates that Thomson's thesis is easily transferable into the legal realm and, if more pro-choice advocates focused on Thomson's argument in defense of abortion rights, this would go a long way to protecting the right against the recent onslaught of attempted passages of state-sponsored "Personhood/Human Life Amendments."9

Yet there is one aspect of Thomson's argument that is typically overlooked. While she spends the bulk of her essay arguing that abortions are never unjust (i.e., since the fetus never has a right to a woman's body, the withdrawing of bodily sustenance never constitutes a violation of justice), she also argues that some abortions can be morally indecent. While she never defines exactly what she means by an "indecent" abortion, she does give an example of what such an abortion would look like: "It would be indecent in the woman to request an abortion, and indecent in a doctor to perform it, if she is in her seventh month, and wants the abortion just to avoid the nuisance of postponing a trip abroad."10 She also lumps "indecency" together with other displays of non-virtuous character traits, such as self-centeredness and callousness.11 Therefore, although she does not make this explicit, Thomson seems to be arguing that some instances of abortion are obtained for dubious reasons and that, while a woman is always within her rights to obtain one, some reasons do not reflect the best character possible.

Rosalind Hurthouse develops this position in her article "Virtue Theory and Abortion." Here, she argues that, from a virtue ethics perspective, it is not sufficient to maintain that a woman has a moral right to an abortion; although it may be the case that women possess this right, this does not exhaust the moral dimensions of abortion choice. According to Hursthouse, we must ask a further, far more complex, question: are women using their abortion right well, for:

… in exercising a moral right I can do something cruel or callous, or selfish, light-minded, self-righteous, stupid, inconsiderate, disloyal, dishonest - that is, act viciously. Love and friendship do not survive their parties' constantly insisting on their rights, nor do people live well when they think that getting what they have a right to is of preeminent importance; they harm others, and they harm themselves.12

Hursthouse spends the rest of her article detailing the difference between a "vicious" and "virtuous" abortion. Because of her adherence to virtue ethics, this will be largely determined by whether the woman in question was manifesting virtuous or vicious character traits when coming to her decision to abort. As an example of an abortion that would betray a less-than-virtuous character, Hursthouse cites aborting for the sake of usurping one's responsibilities in exchange for " 'having a good time,' or for the pursuit of some false vision of ideals of freedom or self-realization."13 Yet, she also argues that some abortions do not reflect a vicious character; that, indeed, some abortions can be obtained for reasons that manifest virtues such as responsibility and care.

Consider, for instance, a woman who has already had several children and fears that to have another will seriously affect her capacity to be a good mother to the ones she has — she does not show a lack of appreciation of the intrinsic value of being a parent by opting for abortion. Nor does a woman who has been a good mother and is approaching the age at which she may be looking forward to being a good grandmother. Nor does a woman who discovers that her pregnancy may well kill her. Nor, necessarily, does a woman who has decided to lead a life centered around some other worthwhile activity or activities with which mother- hood would compete…14

Hursthouse is not arguing, therefore, that women should not have a right to an abortion. She does argue, however, that the motivations for obtaining one should be subjected to moral scrutiny. Leslie Cannold's research, featured in her book The Abortion Myth, illustrates that there are many pro-choice women who, while ardently defending a woman's right to an abortion, nevertheless pass moral judgments concerning particular abortion decisions, and that they typically do so, like Hursthouse and Thomson, by emphasizing considerations of virtue and care.

Almost all the women I interviewed saw the abortion issue as revolving around the pregnant woman's decision-making process. An abortion decision that did not reflect a woman's "feelings" and "love" for her could-be child and other significant people in her life, and that was not motivated by care and protective concern for all those she loves, was just plain wrong.15

Cannold noted that the women she interviewed were eager to move beyond the discussion of abortion qua rights and more towards a discussion of the morality of individual abortion choices. In order for a particular instance of abortion choice to count as "moral," the decision-making process had to involve prizing "responsibility, motherhood, relationship, and caring."16 Cannold concludes that:

For pro-choice women, the feminist contention that the only requirement for an ethical abortion is that a woman freely chooses it was simply not enough… pro-choice women felt it necessary that, in her decision-making, the woman consider the fetus not as an autonomous cosmonaut but as a vulnerable and dependent creature who had the capacity to become her child… the way [the pregnant woman] thinks about pregnancy, are necessary things to know in making a moral assessment of an aborting woman's decision.17

We can use virtue ethics to navigate the ethical dimensions of obtaining an abortion for reasons pertaining to fetal disability. As I will show, there are at least two instances when aborting a fetus for this reason need not manifest any vicious character or motivation. Yet, as I will also argue, this was the not case when it came to Madison's proposed abortion, nor to any abortion that seeks to terminate a fetus' life under the false presumption that her disability renders her a being of questionable moral worth. Abortions for such reasons not only perpetuate prejudice and dehumanization against the disabled, it can also frustrate our moral growth and character.

Virtue ethics, abortion, and disability

The resources to help families deal with disabled children, particularly low- income families, are paltry. A 2000 summary of the book Expensive Children in Poor Families: The Intersection of Childhood Disabilities and Welfare indicates that the cost of specialized care for a disabled child (in addition to the typical care needed to support a single child) averaged an extra $134 a month; for a family like Jackie's this is a substantial piece of their monthly income. Parents of disabled children will also face income reduction due to compromised working hours, which may also increase the potential of losing their job altogether and add to the difficulty of finding a replacement job. Forgone salaries as a result of compromised work averages $80 a month. Consequently, it was found that:

[u]nless they received federal aid in the form of Supplemental Security Income (SSI) families with disabled children were more likely than other families to be poor or extremely poor, and direct out-of-pocket expenditures pushed between 4 and 12 percent of families with disabled children into extreme poverty. Families with disabled children were also more likely than others to report hunger, housing instability, unpaid bills, and utility shutoffs.18

The prospects facing a middle- to low-income family raising a disabled child parallels the bleak financial prospects facing many single mothers. Indeed, it is hard to ignore the role that socio-economic factors play in many women's decision to abort. There is simply no denying the correlation between poverty and rates of abortion. Women who live below the poverty line are about four times as likely to obtain an abortion when compared to women who live 300% above the poverty level.19 On average, single women have higher poverty rates than single men; a phenomenon described by Diana Pearce as "the feminization of poverty."20 Adding a child into the mix, of course, only serves to enhance this disparity. Adding a disabled child only agitates already bleak financial prospects. On the other hand, there is also an abundance of evidence that increased financial, medical, and child-care support are correlated with a decrease in abortion rates.21 Yet, in a sad display of irony, anti-abortion ideology often goes in tandem with anti-welfare rhetoric. An additional layer of irony is present when one considers how difficult it is to navigate the bureaucracy often necessary to secure whatever services are available, as they are not always obvious "to anyone who does not have the wherewithal to battle agencies. Doing so often requires education, time, and money — which is a painful irony given that these services are intended to benefit people who may be short on all three."22

Aborting a fetus, disabled or not, in response to the difficult financial prospects facing single mothers and families who are already struggling need not manifest indecency or vice, especially if one is considering the responsibilities one has incurred to already-existing children or other dependents. The fact that abortions occur so frequently in our society as a result of socio-economic hardships illustrates that a lot of our pronatalist ideology is more likely lip-service, and this says far more about us as a society than it does about an individual woman who aborts out of fear of such prospects. Rather than illustrating a prejudice against the child to be, an abortion for this reason may, instead, reflect the sad reality that one's obligations to the self, or existing dependents, cannot be met in tandem with caring for a child who may just need more than one can provide.

While not reflecting a vice on behalf of people having to survive within the confines of their socio-economic limits, the decision to abort in these circumstances does reflect the vice in a society that imposes such conditions upon its citizens. As Hursthouse writes, aborting in these cases illustrates that there is something "terribly amiss in the conditions of [our] lives, which makes it so hard to recognize pregnancy and childbearing [and in this case, caring for a child with Down syndrome] as the good that they can be."23 Bioethicist Adrienne Asch argues that the difficulties facing disabled persons are often times due to "discriminatory social arrangements that are changeable,"24 rather than an inherent difficulty in the condition itself. Be that as it may, women make abortion decisions within the boundaries of the society in which they live. It is difficult to fault a struggling family for making the decision to abort within the context of these discriminatory social arrangements; indeed, as Tom Shakespeare argues, it is problematic to call such choices legitimately free ones, since they often do not reflect the actual desires of the pregnant woman but, rather, her oppressive cultural and economic circumstances.25 If one really were concerned over the rates of disabled fetuses that are aborted, the solution is not to prohibit these kinds of abortions but, as Alison Piepmeir suggests, work to make society "a welcoming place for people with disabilities," such as using state funds for training "public schools to be meaningfully inclusive" and providing "easily accessible medical care and early intervention" in addition to caring for adults with disabilities by providing housing "so that there are not waiting lists years long."26

Asch is correct that many of the difficulties facing disabled persons has its roots in a society that gives privilege to the "able-bodied." However, not all difficulties are social constructs. Some congenital afflictions are so debilitating that they severely affect the child's quality of life and subject her to a lifespan largely consisting of pain and suffering (although, as will be discussed below, we should be careful how we judge such suffering given our limited perspective as non-disabled persons). Tay-Sachs disease is one such example, as it is quite possibly one of the most serious birth defects. The disease is fatal, often within four of five years from birth, and the road to death is fraught with intense physical suffering, including deafness, blindness, loss of muscle strength, delayed mental skills, loss of motor skills, seizures, and paralysis of muscle function. In short, an infant born with Tay-Sachs will live a brief and very painful life. Aborting a sick fetus in order to spare the child this kind of life need not manifest indecency or viciousness. Quite the contrary, it can often manifest feelings of concern, care, and love.

In a particularly heart-wrenching essay, Emily Rapp reveals that had she known about her son's Tay-Sachs diagnoses while pregnant, she would have chosen to abort him.

If I had known Ronan had Tay-Sachs… I would have found out what the disease meant for my then unborn child; I would have talked to parents who are raising (and burying) children with this disease, and then I would have had an abortion. Without question and without regret, although this would have been a different kind of loss to mourn and would by no means have been a cavalier or uncomplicated, heartless decision. I'm so grateful that Ronan is my child. I also wish he'd never been born; no person should suffer in this way—daily seizures, blindness, lack of movement, inability to swallow, a devastated brain—with no hope for a cure. Both of these statements are categorically true; neither one is mutually exclusive.27

Not only does Rapp manifest love and care for her child — and appeals to those same emotions to justify the abortion had she been aware of his condition — she also conveys the difficulties and nuances that make abortion such a morally complex topic. Here is a woman who loves her son, and feels that "his life is of utmost value to me." She writes that she doesn't "regret a single minute of this parenting journey, even though I wake up every morning with my heart breaking, feeling the impending dread of his imminent death." And yet, she also admits that had she known this was her son's reality, she would have sought an abortion to spare him a brief lifetime of suffering; that, for him, it would have been better not to have been born. Though we could perhaps legitimately debate whether we can make third-party judgments concerning whether someone's life is worth living, it is clear that Rapp's motivation here is one that stems from love and care for her son. These are thoughts she herself admits are "paradoxical," but ones that give an adequate picture of how hard the abortion issue really is. Rapp's article illustrates that aborting in cases of severe disability because one is primarily concerned with the child's quality of life need not manifest any vicious character traits. The impetus fueling such a decision is akin to what may be motivating an adult child seeking to remove a parent from artificial life support if (s)he is suffering from a debilitating and painful illness.

Madison's dehumanization

Had Jackie aborted Madison, for whatever her reasons, she would have been acting fully within her rights. This is not what is up for dispute. The imperative issue here is whether, in exercising her rights, Jackie would have been doing so for reasons that reflect a prejudicial attitude against the disabled in our society. Ruth Hubbard puts this well when she writes: "A woman must have the right to abort a fetus, whatever her reasons, precisely because it is a decision about her body and about how she will live her life. But decisions about what kind of baby to bear inevitably are bedeviled by overt and unspoken judgments about which lives are 'worth living.'"28 Most of the advice in favor of aborting Madison did not reflect socio-economic concerns, or worries about Madison's quality of life; indeed the only two people who brought up the financial difficulties of raising a disabled child were the two who ultimately claimed to support Jackie had she decided to keep the baby — me and her mother. What concerned me about the advice to abort Madison was the immediate moral demotion that took place in the eyes of her family (issues concerning whether the human fetus is a human person, with the moral and legal rights thereof, are irrelevant in this context. Jackie's family had already regarded Madison as a person and, presumably, would have maintained that it was a being worthy of moral and legal rights while they thought she was "healthy."). Comments like "it's not worth having it," "you can just abort it and try again," or "you're going to abort it, right?" reveal a far more disturbing attitude: that Madison was suddenly unworthy of being brought into existence. The subtle change of referring to Madison as an "it" rather than as a "her" or a "she" (especially given that she had, up until that point, always been denoted either by her name, the term "baby," or by a gendered pronoun) reflected her dehumanization, as the term "it" is typically used to denote things rather than people. Indeed, the process of dehumanizing a person or group often first manifests itself via our language with the use of derogatory terms or slurs. In his autobiography A Child Called It, David Pelzer chronicles years of harrowing abuse at the hands of his alcoholic and mentally ill mother. Her dehumanization of Pelzer is encapsulated by her refusal to call him by his name — rather she refers to him as "The Boy" or as "It."29 The first time he was called the latter by his mother, Pelzer writes that:

the word "It" stunned me like never before. She had stripped me of my very existence. I gave all that I could to accomplish anything positive for her recognition. But again, I failed. My heart sank lower than ever before. Mother's words were no longer coming from the booze; they were coming from her heart. I would have been relieved if she had returned with a knife and ended it all…. I was nothing but an "It."30

The psychological consequence of using dehumanizing language is that we no longer view those individuals as persons worthy of respect, care, or dignity and, therefore, we do not have to deal with the complexities that come with the human condition. It is easier to dispose of the person if we can write them off with a single depreciative term. This is very obvious in Arizona, where I currently live, where we do not have to deal with the difficult moral questions that come with the influx of undocumented immigrants if we write them all off as "illegals" or "spics" who are just coming here to take jobs from hardworking Americans or sell drugs. We don't have to view individual Muslims as persons if we can write them all off as "ragheads" or "Arabs." And once we have stripped away their individuality in our language, it becomes easier to strip them of their individuality elsewhere. It then becomes easier to deport them, to be violent against them, or to kill them. Ethicist Virgina Held argues that we must strive to cultivate in ourselves the kinds of emotions, e.g., sympathy and empathy, that encourage us to engage in caring relationships with others.31 Using dehumanizing language to refer to other human beings achieves the exact opposite effect; it cultivates in us not a sense of community and care, but of disconnect and callousness.

In this case, Madison was no longer viewed as a wanted and loved baby girl, she was, rather, an "it," or, as someone put it, a possible "retard" or "mongoloid." These terms serve a similar function as the slurs directed at certain racial groups. As Asch notes, our prejudices against disabled individuals can mirror our prejudice against other minority groups in that we focus on one trait (e.g., skin color, religious affiliation, or a disability) and overlook other pertinent traits about the individual. For this reason, Asch argues against the permissibility of using prenatal testing in order to check for disabilities because it encourages looking at a single aspect of an embryo's or fetus' character and ignoring any other relevant aspects of who that fetus could become in the future.

Prenatal testing is a clear case of first impression, and as with any such impression, it is an incomplete impression; when followed by selective abortion or by discarding an otherwise implantable embryo, the first impression includes a decision never to learn about the test of who that embryo or fetus could become after its birth…32

Along with Saxton, disability advocate Deborah Kaplan argues that our attitudes towards prenatal testing reflect our general attitudes towards the disabled.

If persons with disabilities are perceived as individuals who encounter insurmountable difficulties in life and who place a burden on society, prenatal testing may be regarded as a logical response. However, if persons with disabilities are regarded as a definable social group who have faced great oppression and stigmatization, then prenatal screening may be regarded as yet another form of social abuse.33

Similar to what is morally wrong with racism and sexism, the individuals who touted abortion as the obvious solution to Jackie's "problem" were ignoring the possible individual in favor of focusing on this one particular trait.34 Jackie's family had already come to regard Madison as part of the family — as a person with moral status and worth. They were then willing to retract this moral status and advocate the destruction of a human fetus because of a trait that, like race and gender, is utterly irrelevant for the ascription of moral status or personhood. In aborting Madison, the intention was not to prevent a disability or illness (indeed, it is for these reasons women are encouraged to take prenatal vitamins, folic acid, and to stay away from alcohol, drugs, and tobacco during pregnancy), rather it was "to prevent the birth of a human being who will have one of these undesired characteristics."35

Depriving a human being of their moral status and personhood due to a disability has a sad and disconcerting history. In 1848, Samuel G. Howe's Report Made to the Legislation of Massachusetts argued that persons with disabilities are "always a burden upon the public. Persons of this class are idle…[and] even worse than useless. Every such person is like an Upas tress, that poisons the whole moral atmosphere about him."36 It is worth asking what Madison's metamorphosis from welcomed child to disposable fetus says about our deep-seated views regarding the value of those who are disabled. Do we feel at liberty to advocate termination of a disabled child, in this case a possible Down syndrome child, because abortion is an accepted practice in our society? Do we think to ourselves, when we see a Down syndrome or disabled person, that she should have been aborted; that her parents' failure to not abort her was a mistake or, at least, a decision that needs defending? Are disabled persons simply disabled fetuses who, as Saxton puts it, didn't "get caught" during a prenatal screening?37 This seems to be the attitude harbored by some physicians who inform an expecting family that their child has Down syndrome. Emily Perl Kingsley tells of her experiences when her son, Jason, was born with the condition in 1974. Her doctors assumed she would opt out of raising the baby, and she was tranquilized and given medication to stop her lactation. Jason was referred to as a "mongoloid" who would "never learn to speak, think, walk, or talk."38 Despite such a prognosis, Emily and her husband Charles dedicated themselves to mentally and tactilely stimulating Jason as much as they could and, consequently, Jason's abilities soared far beyond many people's expectations (this serves to further support Asch's claim that many of the obstacles facing disabled persons are socially constructed. Who knows how many disabled children, with more proper and intense education, would also excel).

Negativity against children with Down syndrome remains prevalent within the medical community. A more recent study revealed that 23% of primary care physicians either emphasize the negative aspects of Down syndrome in the hopes that prospective parents would decide to terminate their pregnancy or actively urge prospective parents to terminate.39 Another study involving mothers who decided to continue the pregnancy after a Down syndrome diagnoses revealed the constant disdain such a decision often faces. Indeed, like Jackie's family and friends, many of the obstetricians immediately resorted to positing abortion as the obviously correct choice, one going so far as offering to place the patient on a flight to a location where late-term abortions are legal, even though the patient had given no indication that she was seeking one. Another obstetrician did not ask the parents if they wanted to abort, rather he simply told them that they had five days to decide when they wanted to abort.40 Another woman indicated that, upon hearing that she would continue the pregnancy and parent the child, one of the physicians disparaged her decision by asking: "What are they, Mormons or something"?41 Of course, this was not the experience of all the women, but enough to warrant concern about how fetuses with Down syndrome are viewed by many in the medical profession.

Madison's case involved a group of persons who at one point were willing to enter into a relationship of love and care with this future baby — indeed, they had already, to the extent one can with fetal life, started this relationship - and they then retracted this care and advocated destruction of its life instead for reasons that seemed purely prejudicial against disabled persons (while it is certainly possible that there were legitimate concerns fueling their advice in favor of abortion, this was not manifested by the nature of their comments). This is, at least partially, a result of, and a contribution toward, the dehumanization of the disabled in our society — and clearly dehumanizing others is far from virtuous and something we ought to avoid. Moreover, embracing and caring for those who are disabled, rather than dismissing their needs as a burden, presents us with an opportunity to cultivate certain virtues. Often, those who are disabled require extra care and patience from their guardians, and from society in general, as they strive to live as "normally" as their condition permits. This provides for others opportunities to provide that care and patience, to embrace the disabled as part of our community, to reach out and help others who have a difficult time caring for themselves. By refusing to do so, according to Saxton, we "deny ourselves the opportunity for connection to basic humaneness."42 To advocate getting rid of such persons because they are deemed unworthy of existence not only kills a fellow human being, it frustrates our moral development.

It is also imperative to remember that disability is not something that simply strikes a group of persons and their families, something that if we are "lucky" enough we can hope to avoid. In reality, most of us, if we live long enough, will end up with some kind of disability, e.g., dementia or being wheelchair bound or bedridden. We, or our "normal" loved ones, could also be victims of accidents that render us physically or mentally disabled. According to Rosemarie Garland-Thomson, our universal vulnerability to disability means that we should look upon it as an inherent aspect of the human condition, rather than a radical departure from normalcy.43 Interacting with, and caring for, persons with disabilities offers us an opportunity for mental, moral, and spiritual growth. It serves to "defeat our hubris… accepting the people with disabilities who enter our lives as unexpected and often unwelcomed gifts would be an ancillary benefit. The primary benefit would be valuing the inevitable growing into disability inherent in the human condition."44 Persons with disability teach us empathy, patience, compassion, and most importantly, they are a reminder that we cannot, as much as we would like to, always control and perfect every facet of our lives. These are all lessons that, from a virtue ethics perspective, we should embrace as opportunities to enhance our character.

Garland-Thomson is sympathetic to arguments in favor of selective abortion for the sake of the child's welfare, when the illness is so bad that it leads to a great amount of suffering. She discusses Rapp's struggle with Ronan's Tay-Sachs and affirms the distinction I make above — there is a marked difference between Rapp's reasons for wanting to have aborted Ronan and the reasons offered in favor of aborting Madison: "Rapp's conviction that she would not have brought Ronan into the world because of his disability comes not from acculturated disability prejudice on Rapp's part."45 Nevertheless she cautions against being quick use our standard of flourishing as a litmus test for determining whether those who are disabled suffer. When we do so, we risk blinding ourselves to only our perspective:

When we imagine ourselves as charged with the mission of relieving the suffering of others, it is all too easy for projection to overtake empathy and for our own failure to imagine living with disability to lead to alleviating suffering by eliminating the person with a disability… it is an inability to tolerate or even witness in others what we fear we cannot endure in our own lives.46

The inherent contradiction that comes in stories like that of Rapp's, where she simultaneously suffers for Ronan's condition and still takes great joy in his existence, is a paradox that points to the enriching beauty of the human condition, it is "suffering entangled with joy… [t]his, I offer, is the 'giftedness' of disability."47 To advocate for the destruction of the disabled on the grounds that such individuals are a nuisance, or unworthy of living, contributes to a destructive form of individualism, rather than emphasizing the interconnectedness and frailty of the human condition; in the words of Nel Noddings: "one's soul dies as it detaches from the concrete persons who stretch out their hands in need or friendship."48

Madison revisited

Subsequent diagnostic tests revealed Madison did not have Down syndrome after all. Everyone afterwards was relieved and happy, and, predictably, Madison reverted to being a beloved fetus/baby with moral worth. Madison's reacquisition of moral status bothered me as much as its loss — for it solidified in my eyes just how much was riding on the outcome of those tests. Madison is now a thriving, impish, perfectly "healthy" three-year-old girl, who is loved and cared for by her family. To be entirely fair to them, it is more than likely that, had Madison been born with a disability, she would have still been loved and accepted by her community. Abby Lippman and Benjamin Wilfond note that individuals who may have expressed a preference towards aborting a disabled fetus will nonetheless embrace that same fetus and care for it once it is born; that is, while at first individuals may be "oriented to avoiding the birth of a child with Down syndrome… the after stories [are] oriented to caring for a child… 49 Nevertheless, it remains the case that, had their advice been heeded, she may not have been born at all had she been disabled. Yet Madison's moral worth and moral status would have remained unaffected had she been born with Down syndrome. As Asch contends, "life with disability is worthwhile and … a just society must appreciate and nurture the lives of all people, whatever the endowments they receive in the natural lottery."50 A more inclusive, caring, and nurturing society, one that strives to accept all its members and help them walk a path toward a flourishing life, regardless of their limitations, is a more virtuous and eudemonistic one.

Endnotes

  1. Marsha Saxton. 2010. "Disability Rights and Selective Abortion." In The Disability Studies Reader, edited by Lennard Davis. Routledge, p. 126.
    Return to Text
  2. Keith Sharp and Sarah Earle. 2002. "Feminism, Abortion, and Disability: irreconcilable differences?" Disability and Society, 17.2: 137-145, at p. 137.
    Return to Text
  3. Sharp and Earle, 2002, p. 138.
    Return to Text
  4. Ibid.
    Return to Text
  5. Sharp and Earle, 2002, p. 139.
    Return to Text
  6. Sharp and Earle, 2002, p. 140.
    Return to Text
  7. See, for example: Francis Beckwith. 1992. "Personal Bodily Rights, Abortion, and Unplugging the Violinist." International Philosophical Quarterly, 32.1: 105-118; John Wilcox. 1989. "Nature as Demonic in Thomson's Defense of Abortion." In The Ethics of Abortion. Amherst: Prometheus Books: 257-271; and Christopher Kaczor. 2011. The Ethics of Abortion: Women's Rights, Human Life, and the Question of Justice. New York: Routledge, among many others.
    Return to Text
  8. Tenth Pennsylvania District Court, McFall v. Shimp, 1978, www.ucs.louisiana.edu/~ras2777/judpol/mcfall.html
    Return to Text
  9. See my article "Rethinking Roe v. Wade," where I present an argument to this effect in full. (Bertha Alvarez Manninen. 2010. "Rethinking Roe v. Wade: Defending the Abortion Right in the face of Contemporary Opposition." American Journal of Bioethics, 10.2: 33-46.)
    Return to Text
  10. Judith Jarvis Thomson. 1971. "A Defense of Abortion." Philosophy and Public Affairs, 1.1: 47-66, at p. 65.
    Return to Text
  11. Thomson, 1971, p. 61.
    Return to Text
  12. Rosalind Hursthouse. 1991. "Virtue Theory and Abortion." Philosophy and Public Affairs, 20.3: 223-246, at p. 235.
    Return to Text
  13. Hursthouse, 1991, p. 242.
    Return to Text
  14. Hursthouse, 1991, p. 241
    Return to Text
  15. Leslie Cannold. 1998. The Abortion Myth: Feminism, Morality, and the Hard Choices Women Make. Hanover: Wesleyan University Press, pp. xix-xx.
    Return to Text
  16. Cannold, 1998, p. 17.
    Return to Text
  17. Cannold, 1998, p. 92.
    Return to Text
  18. Public Policy Institute of California. 2000. "Disabled Children in Low-Income Families: Private Costs and Public Consequences" Available at: http://www.ppic.org/content/pubs/rb/RB_1000MMRB.pdf. Also, see Marcia Meyers et al. 2000. Expensive Children in Poor Families: The Intersection of Childhood Disabilities and Welfare. San Francisco: Public Policy Institute of California.
    Return to Text
  19. Rachel Jones et al. 2002. "Patterns in the Socioeconomic Characteristics of Women Obtaining Abortion in 2000-2001." Perspectives on Sexual and Reproductive Health. 34.5: 226-235.
    Return to Text
  20. Diana Pearce. 1978. "The Feminization of Poverty: Women, Work, and Welfare." Urban and Social Change Review 11.1-2:28-36. See also Steven Pressman. 2002. "Explaining the Gender Poverty Gap in Developed and Transitional Economies" Journal of Economic Issues, 36.1: 17-40; Lynne Casper, Sara S. McLanahan, and Irwin Garfinkel. 1994. "The Gender-Poverty Gap: What We Can Learn From Other Countries." American Sociological Review 59.4:594-605.
    Return to Text
  21. See Steve Tracy. 2010 "Abortion, the Marginalized, and the Vulnerable: A Social Justice Perspective for Reducing Abortion." Cultural Encounters: A Journal for the Theology of Culture, 6.2: 23-33.
    Return to Text
  22. Andrew Solomon. 2012. Far From the Tree: Parents, Children, and the Search for Identity, Scribner Press, p. 177.
    Return to Text
  23. Hursthouse, 1991, p. 240.
    Return to Text
  24. Adrienne Asch. 1999. "Prenatal Diagnosis and Selective Abortion: A Challenge to Practice and Policy." American Journal of Public Health, 89.11: 1649-1657, at p. 1650.
    Return to Text
  25. See: Tom Shakespeare. 1998. "Choices and Rights: Eugenics, Genetics, and Disability Equality." Disability and Society, 13.5: 665-681.
    Return to Text
  26. Alison Piepmeier. April 1, 2013. "Outlawing Abortion Won't Help Children with Down Syndrome." The New York Times http://parenting.blogs.nytimes.com/2013/04/01/outlawing-abortion-wont-help-children-with-down-syndrome/
    Return to Text
  27. Emily Rapp, 2012, "Rick Santorum, Meet My Son." http://www.slate.com/articles/double_x/doublex/2012/02/rick_santorum_and_prenatal_testing_i_would_have_saved_my_son_from_his_suffering_.html
    Return to Text
  28. Ruth Hubbard. 2010. "Abortion and Disability: Who Should and Should Not Inhabit the World." In The Disability Reader, edited by Lennard Davis. Routledge, p. 118.
    Return to Text
  29. David Pelzer. 1995. A Child Called It. Deerfield Beach: Health Communications Inc.
    Return to Text
  30. Pelzer, 1995, pp. 81-82.
    Return to Text
  31. See: Virginia Held. 2006. The Ethics of Care: Personal, Political, and Global. Oxford University Press.
    Return to Text
  32. Adrienne Asch. 2000. "Why I Haven't Changed My Mind About Prenatal Diagnoses: Reflections and Refinements." In Prenatal Testing and Disability Rights, Georgetown University Press, 234-258, at p. 235.
    Return to Text
  33. Deborah Kaplan and Marsha Saxton, 2003, "Disability Community and Identity: Perceptions of Prenatal Screening." http://www.geneticsandsociety.org/article.php?id=2003
    Return to Text
  34. It should be noted that there is debate concerning whether ableism (discrimination against the disabled) really is comparable to racism/sexism. While it is clear that there is no inherent disadvantage in being a member of a certain race or gender, it is controversial whether the same can said about disabilities. John Harris, for example, argues that there are indeed inherent disadvantages that come with certain disabilities and to admit this is not tantamount to denying disabled persons moral status (in contrast Asch argues that the difficulties facing individuals with disabilities is less a product of their actual impairments and more as result of "discriminatory social arrangements that are changeable"). See: John Harris. 2001. "One Principle and Three Fallacies of Disability Studies." Journal of Medical Ethics, 27: 383-387.
    Return to Text
  35. Asch, 1999, p. 1651.
    Return to Text
  36. Solomon, 2012, p. 179.
    Return to Text
  37. Saxton, 2010, p. 126.
    Return to Text
  38. Solomon, 2012, p. 171.
    Return to Text
  39. Brian G. Skotko. 2005. "Prenatally Diagnosed Down syndrome: Mothers who continued their pregnancies evaluate their health care providers." American Journal of Obstetrics and Gynecology, 192: 670 = 677, at pp. 670-671.
    Return to Text
  40. David Helm et al. 1998. "Prenatal Diagnosis of Down syndrome: Mothers' Reflections on Supports Needed from Diagnosis to Birth." Mental Retardation, 36.1: 55-61, at p. 57.
    Return to Text
  41. Helm, 1998, p. 59.
    Return to Text
  42. Saxton, 2010, p. 123.
    Return to Text
  43. Rosemarie Garland-Thomson. 2012. "The Case for Conserving Disability." Journal of Bioethical Inquiry, 9: 339-335.
    Return to Text
  44. Garland-Thomson, 2012, pp. 348-349.
    Return to Text
  45. Garland-Thomson, 2012, p. 350.
    Return to Text
  46. Ibid.
    Return to Text
  47. Garland-Thomson, 2012, p. 353.
    Return to Text
  48. Nel Noddings. 1989. Women and Evil. University of California Press, p. 222.
    Return to Text
  49. Abby Lippman and Benjamin Wilfond. 1992. "Twice-told Tales: Stories about Genetic Disorders." American Journal of Human Genetics, 51.4: 936-937.
    Return to Text
  50. Asch, 1999, 1652.
    Return to Text
Return to Top of Page


Copyright (c) 2015 Bertha Alvarez Manninen



Volume 1 through Volume 20, no. 3 of Disability Studies Quarterly is archived on the Knowledge Bank site; Volume 20, no. 4 through the present can be found on this site under Archives.

Beginning with Volume 36, Issue No. 4 (2016), Disability Studies Quarterly is published under a Creative Commons Attribution-NonCommercial-NoDerivatives license unless otherwise indicated. 

Disability Studies Quarterly is published by The Ohio State University Libraries in partnership with the Society for Disability Studies.

If you encounter problems with the site or have comments to offer, including any access difficulty due to incompatibility with adaptive technology, please contact libkbhelp@lists.osu.edu.

ISSN: 2159-8371 (Online); 1041-5718 (Print)