Abortion rights tend to be somewhat less hotly contested in the case of fetal abnormality; what does this attitude reveal about our cultural perspective on disability, and is it always ethical to abort a fetus with a known disability?
Bertha Alvarez Manninen approaches the abortion rights controversy through a variety of perspectives and ethical frameworks in Pro-Life, Pro-Choice (Vanderbilt University Press, 2014). She addresses the social circumstances that influence many women’s decision to abort and considers whether we believe that there are good and bad reasons to abort, and also looks at the call for post-abortion grieving rituals for those who desire them and the attempt to make room in the pro-choice position for the views of prospective fathers. The following excerpt from chapter 5, “A Pro-Choice Moral Framework,” considers the ethicality of abortion due to a known fetal abnormality.
In 2010 a very dear friend of mine became pregnant with her second baby, whom I will call Jane. During the pregnancy, the quad screen test revealed that Jane had an increased risk of being born with Down syndrome, and my friend, not surprisingly, began to panic. She sought my advice concerning what to do about the pregnancy, and my response was that the only people who had the ability to make this decision were her and her family. At the time, my friend was the sole breadwinner for her family, had an older daughter, and was helping to raise her step-daughter. The prospect of raising a disabled child with such limited means was daunting. I impressed upon her the fact that if she chose to continue the pregnancy, I would do everything within my power to help her with the child. She then burst into tears, for other than her own mother, I was the only one who had reassured her that I would have supported her decision to keep the baby.
Other members of her family proposed abortion as the obvious route to take: “You’re going to abort it right?” “It’s not worth having it.” “You can just abort it and try again.” “It’s not really a baby anyway.” This is the same being that, just days prior, had been embraced by her family 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 to them. But now just the possibility of disability was deemed sufficient reason for them to retract the moral status and personhood that already had been ascribed.
The reactions to Jane’s possible disability prompted me to think about the ethical dimensions of aborting due to disability. Many individuals who are otherwise anti-choice make exceptions for rape, incest, endangerment to the life of the pregnant woman, and fetal disability. But does this mean that aborting because of fetal disability is always permissible?
Philosopher Rosalind Hursthouse includes in her essay “Virtue Theory and Abortion” a brief discussion of the social pressures that lead so many women to abort:
“In communities in which life is a great deal tougher for everyone than it is in ours, having the right attitude to human life and death, parenthood, and family relationships might well manifest itself in ways that are unlike ours. When it is essential to survival that most members of the community fend for themselves at a very young age or work during most of their waking hours, selective abortion or infanticide might be practices either as a form of genuine euthanasia or for the sake of the community and not, I think, be thought callous or light-minded. . . . What it does show is that something is terribly amiss in the conditions of their lives, which make it so hard to recognize pregnancy and childbearing as the good that they can be.”
Gaining an understanding of what life can look like for families of disabled children, especially lower- to middle-income working-class families who already have to stretch finite resources, helps us see that aborting a fetus due to disability may at times say more about the society a woman lives in than about the woman herself. The resources to help families care for 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 working family this may represent a substantial piece of their monthly income. Parents of disabled children 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 new one. Forgone wages as a result of compromised working hours average $80 a month. Consequently, it was found that: “unless 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.”
The prospects facing a low- to middle-income family raising a disabled child parallels the financial prospects facing many single mothers. Aborting a fetus in response to the bleak financial prospects that face single mothers and families who are already struggling can be commensurate with considerations of virtue and care, especially if one is considering the responsibilities one has incurred to already existing children or other dependents.
Aborting a disabled fetus because one is genuinely concerned about the child’s quality of life can also be a caring decision. Fetal abnormality is a common reason for later-term abortions. For example, Tay-Sachs disease is one of the most serious congenital defects. The disease is fatal, often within four or five years of birth, and the road to death is fraught with intense physical suffering, deafness, blindness, loss of muscle strength, delayed mental skills, loss of motor skills, seizures, and paralysis.
In a heart-wrenching essay, Emily Rapp reveals that if her son had been diagnosed with Tay-Sachs while she was 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.”
Not only does Rapp manifest love and care for her child, she appeals to those same emotions to justify her contention that she would have had an abortion had she been aware of his condition. She thus 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 would be 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. These are thoughts she herself admits are “paradoxical,” but ones that give an adequate picture of how hard the abortion issue really is, especially when we remove it from the pages of a philosophy book and place it into the lives of real people.
Despite some understandable instances in which women choose to abort because of fetal disability, many pro-choice advocates and disability advocates express important concerns. Some pro-choice feminists argue that prenatal testing for disabilities is morally problematic because it augments our prejudices against individuals with disabilities. These prejudices mirror attitudes against other minority groups in that we focus on one trait (skin color, religious affiliation, or a disability) and blind ourselves to the individual’s other pertinent qualities. Pro-choice feminist Adrienne Asch contends that “prenatal testing gives only one piece of information about the embryo or fetus. It 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 rest of who that embryo or fetus could become after birth.”
Disability advocates Deborah Kaplan and Marsha Saxton argue that our attitudes toward prenatal testing reflect our general attitudes toward 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.” Yet other feminists—for example Eva Kittay, who is the mother of a profoundly physically and mentally disabled child—argue that because caring for a disabled child is so important and difficult, the decision to do so cannot be made on anyone’s behalf. Prenatal testing, therefore, is a vital method of ensuring that the decision to parent a disabled child is entirely free and autonomous. Kittay writes:
“Prenatal testing does not eliminate the tragedy of a child who is severely impaired, for I can also envision the agony of making a decision either to abort or not to abort. Rather, the testing shifts the tragic moment and the decisions to be made. But if the decision is made to go to term, even in the face of impairment, at least there is a conscious choice, made with the possibility of a truly informed understanding of what such a decision requires of the future parents.”
The worries expressed by disability rights advocates mostly center around concerns that disabled persons are becoming increasingly stigmatized and marginalized in our society. Some of the reactions against Jane’s possible disability can be interpreted as reflecting this dehumanization. Comments like “It’s not worth having it,” “You can just abort it and try again,” and “You’re going to abort it, right?” can be interpreted as a tacit admission that Jane had suddenly come to be regarded as unworthy of being brought into existence. Up until that point, people had always called her “the baby” or referred to her using a gendered pronoun. If this is indeed what was going on in the minds of my friend’s family, it reflects Asch’s concern: they had substituted the disability for the person and were willing to dispose of her because it was possible that she would possess a trait that is irrelevant for establishing a human being’s moral worth. If one agrees with Asch, the decision to abort Jane for this reason would be as morally problematic as aborting a fetus because it is of the “wrong” gender or race.
If Jane was the object of dehumanizing thoughts and attitudes because of her possible disability, what would this say about our deep-seated views regarding the value of people who are disabled? Do we feel at liberty to advocate the termination of a pregnancy in the case of fetal disability because abortion is an accepted practice in our society? Do we think to ourselves, when we see a disabled person, that she should have been aborted—that her parents’ failure to abort her was a mistake, or at least a decision that requires defending? This seems to be the attitude harbored by some physicians when they inform expecting families that their child will be afflicted with Down syndrome. One study revealed that 23 percent of primary care physicians either emphasize the negative aspects of Down syndrome in the hopes that prospective parents will decide to terminate, or actively urge them to terminate. In another study, an obstetrician reported that he did not ask the parents if they wanted to abort; rather, he informed them that they had five days to decide when they wanted to abort. One woman said that when she indicated that she would continue the pregnancy and parent the child, one of her physicians disparaged her decision by asking: “What are they, Mormons or something?” Michael Miceli and Jason Steele argue that this one-sided, almost wholly negative approach to genetic and disability counseling compromises reproductive liberty: “By not providing the entire picture of what it means to experience disablement, true reproductive ‘choice’ from a disability rights perspective does not exist due to the implicit coercive nature used by the genetic counseling discipline.”
On the other hand, the decision to begin referring to Jane as it may reflect a more complicated attitude—not necessarily a belief that disabled people are unworthy of living, but an understanding of the potential difficulties that can come with raising a disabled child. Vyckie Garrison writes:
“If parents choose to welcome a special needs child into their family, they must consider how it will affect not only that child, but also themselves and their other children. They must make room for breaks and self-care to preserve their own health, mental and physical. In my own church, there was a woman with two children who got pregnant and found out her child had a fatal defect. She decided against having an abortion, believing that God would honor her and heal her child (or at least provide for it). The child lived 13 years in unspeakable pain, without cognition, undergoing surgery after surgery until she died—and by this time the family had exhausted its resources, the other two children had been practically abandoned. The mother had worked herself to the bone, endured a failed promise from God, and had to mourn the child all over again at the end of it all. That child was not a “blessing.” It was not a “rewarding” experience—though the mother might tell you so out of sheer love and the need to justify her situation. The child’s birth destroyed her family, and she was never even aware enough of her own existence to realize she was loved.”
Although some persons, like Kittay, embrace raising a disabled child despite the immense difficulties, other families honestly acknowledge that it is not a task they are capable of or wish to pursue. Perhaps referring to Jane as it rather than she represented my friend’s relatives’ attempt to emotionally disconnect from a being who could greatly disrupt the kind of family life they value. Using such language may make it easier to abort when a family is legitimately concerned that having a disabled child would be drastically life-altering in ways that may not always be positive.
Nevertheless, as in all cases of abortion choice, decisions should be made with the fetus’s humanity, and the respect it is therefore owed, always firmly in mind, regardless of anticipated mental or physical capacities. Detracting from the moral worth of fetuses because of a disability may affect how we view disabled persons outside the womb, as seems to be the case for physicians who deride the choice to raise a disabled child. Tellingly, in response to Garrison’s article, Ronnie Sharpe, who has cystic fibrosis, writes, “After reading her opinion I felt dehumanized, minimized, and devalued. . . . She should think about that before she inserts herself into a disease community that she knows nothing about. You can’t ‘Google’ your way to an understanding of the lives of me and my friends.” In all our interactions with our fellow humans, despite differences in gender, race, religion, political affiliation, and mental and physical capacity, we should strive to avoid language, attitudes, and behaviors that may make someone feel as he did.
Reprinted with permission from Pro-Life, Pro-Choice: Shared Values in the Abortion Debate by Bertha Alvarez Manninen and published by Vanderbilt University Press, 2014.