Abstract
Our ambivalent attitudes toward the notion of ‘a life worth living’ present a philosophical puzzle: Why are we of two minds about the birth of a severely disabled child? Is the child’s life worth living or not worth living? Between these two apparently incompatible evaluative judgments, which is true? If one judgment is true and the other false, what makes us continue to find both evaluations appealing? Indeed, how can we manage to hold these inconsistent judgments simultaneously at all? I critically examine two solutions to this puzzle: the hidden-indexical account and Velleman’s anti-realist account. I propose an alternative explanation which appeals to (a) state-given, as opposed to object-given, reasons for belief and (b) the distinction between belief and acceptance. I argue that (1) the fact that a severely disabled life is not worth living provides object-given reason to believe that that life is not worth living, but (2) after the birth of a severely disabled child, the psychological utility of positive evaluation gives us a state-given reason to believe that that child’s life is worth living, and a reason to accept that, in our relation with the child, her life is worth living. I conclude by drawing a practical lesson about wrongful life suits.
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Notes
Presumably, its repugnance is partly due to the fact that the concept ‘a life unworthy of living (lebensunwertes Leben)’ was abused by the Nazis to ‘justify’ their human experimentation and eugenics programs (cf. Lifton 1986).
“Let the day perish wherein I was born, and the night in which it was said, There is a man child conceived. …Why died I not from the womb? why did I not give up the ghost when I came out of the belly?” (Job 3:3,11; King James Version).
Since the symptoms of a disease usually vary from case to case, it is hard to generalize about which diseases belong to this category. Having said that, the congenital diseases, the symptoms of which are frequently so severe as to make people doubt whether life is always a blessing, include Tay-Sachs disease, Lesch-Nyhan syndrome, and dystrophic epidermolysis bullosa (in particular, Junctional Herlitz type). For example, a description of the typical symptoms of Tay-Sachs disease runs as follows: “A Tay-Sachs child is doomed to a short and increasingly handicapped existence. The child appears well at birth and develops normally for six to eight months, when progressive psychomotor degeneration slowly begins. By eighteen months the child is likely to be paralyzed and blind, unable to take food by mouth, and suffer from constipation and bed-sores. There are increasingly frequent convulsions that cannot be controlled by medication. The last few years of the child’s life are usually spent in a vegetative state. Death typically occurs between the ages of three and five years, usually from infection” (Steinbock 1992, p. 116).
It is not difficult to find people—especially, among disability advocates and the caregivers of the disabled—claiming that there is no such thing as a life not worth living. ‘Every life is worth living’ is arguably one of the slogans of the disability rights movement. For example, a recent documentary about the movement which culminates in the Americans with Disabilities Act of 1990 is titled ‘Lives Worth Living’. See Lives Worth Living. Dir. Eric Neudel. Storyline Motion Pictures, 2011. Film.
“The infant plaintiff would have us measure the difference between his life with defects [mental retardation and substantial defects in sight, hearing, and speech due to his mother’s Rubella during the term of her pregnancy] against the utter void of nonexistence, but it is impossible to make such a determination. This court cannot weigh the value of life with impairments against the nonexistence of life itself. By asserting that he should not have been born, the infant plaintiff makes it logically impossible for a court to measure his alleged damages because of the impossibility of making the comparison required by compensatory remedies.” Gleitman v. Cosgrove, 227 A.2d 689, 692 (N.J. 1967).
“Although we conclude, as did the Gleitman majority, that Sharon has failed to state an actionable claim for relief, we base our result upon a different premise—that Sharon has not suffered any damage cognizable at law by being brought into existence. One of the most deeply held beliefs of our society is that life—whether experienced with or without a major physical handicap—is more precious than non-life…We sympathize with her plight. We cannot, however, say that she would have been better off had she never been brought into the world. Notwithstanding her affliction with Down’s Syndrome, Sharon, by virtue of her birth, will be able to love and be loved and to experience happiness and pleasure—emotions which are truly the essence of life and which are far more valuable than the suffering she may endure. To rule otherwise would require us to disavow the basic assumption upon which our society is based.” Berman v. Allan, 404 A.2d 8, 12-3 (N.J. 1979).
Curlender v. Bio-Science Labs., 106 Cal. App. 3d 811 (Cal. Ct. App. 1980); Turpin v. Sortini, 643 P.2d 954 (Cal. 1982); Harbeson v. Parke Davis, Inc., 656 P.2d 483 (Wash. 1983); Procanik v. Cillo, 478 A.2d 755 (N.J. 1984).
“[S]ome courts have concluded [including Berman v. Allen] that the plaintiff has suffered no legally cognizable injury on the ground that…life—even with the most severe of impairments—is, as a matter of law, always preferable to nonlife…In this case, in which the plaintiff’s only affliction is deafness, it seems quite unlikely that a jury would ever conclude that life with such a condition is worse than not being born at all. Other wrongful life cases, however, have involved children with much more serious, debilitating and painful conditions, and the academic literature refers to still other, extremely severe hereditary diseases [e.g. Tay-Sachs disease]. Considering the short life span of many of these children and their frequently very limited ability to perceive or enjoy the benefits of life, we cannot assert with confidence that in every situation there would be a societal consensus that life is preferable to never having been born at all…it thus seems doubtful that a child’s claim for general damages should properly be denied on the rationale that the value of impaired life, as a matter of law, always exceeds the value of nonlife”. Turpin v. Sortini, 643 P.2d 954, 960–963 (Cal. 1982).
“We need not become preoccupied, however, with these metaphysical considerations. Our decision to allow the recovery of extraordinary medical expenses is not premised on the concept that non-life is preferable to an impaired life, but is predicated on the needs of the living. We seek only to respond to the call of the living for help in bearing the burden of their affliction…We believe that the interests of fairness and justice are better served through more predictably measured damages—the cost of the extraordinary medical expenses necessitated by the infant plaintiff’s handicaps. Damages so measured…will carry a sufficient sting to deter future acts of medical malpractice.” Procanik v. Cillo, 478 A.2d 755, 763 (N.J. 1984).
They are some of the plaintiff’s serious symptoms in Curlender v. Bio-Science Labs., 106 Cal. App. 3d, at 816.
The birth of a mildly disabled life seems to give rise to another pair of puzzling judgments. In such a case, the puzzle is not that the question of whether the disabled life is worth living pulls us in different directions, since it is clearly worth living (e.g. a life with deafness). The problem is rather that the judgment that the parent should have created a different, non-disabled child instead of the disabled child is in tension with the judgment that it is not worthy of regret but of celebration that the actual, disabled child is born. It is an interesting topic whether these apparently conflicting judgments are inconsistent with each other, and, if so, why we are inclined to find both of these incompatible judgments appealing. In any case, that puzzle about a mildly disabled life should not be confused with the topic of this paper, the puzzle about a severely disabled life which is (arguably) not worth living. I also leave open the interesting question of whether the solution that I propose later in this paper for the puzzle about a severely disabled life can be extended to the puzzle about a mildly disabled life. Thanks to Derek Parfit for helping me clarify this point.
Following McMahan (id., pp. 161–165), the proponents of the hidden-indexical account might go on to argue that the wide view of prudential value to which the retrospective judgment is indexed is incommensurable or on a par with the narrow view to which the prospective judgment is indexed—in the sense that neither is superior or inferior to the other, even though the two are not exactly equally good—so the retrospective judgment is no less defensible than the prospective judgment.
I thank David Velleman for personal communication which helped me understand his view better.
Parfit goes on to argue that state-given ‘reasons’ to believe that p are nothing over and above object-given reasons to want to have the belief that p and, if possible, to cause ourselves to have the belief that p. For an objection to this reductive claim, see Reisner (2009). Here I do not intend to settle the issue of whether there are genuine pragmatic reasons for belief. For our purpose, suffice it to say that a state-given ‘reason’ for one to believe that p, either conceptually or substantively, implies the corresponding object-given reason to bring it about that one has the belief that p.
One of the reasons why they overlap is that accepting that p often causes one to believe that p in the long run. In Pascal’s example, accepting and acting upon a religious doctrine tend eventually to induce a belief in the doctrine (Cohen 1992, p. 18). However, it is not a priori true that reasons to accept that p and state-given reasons to believe that p are co-extensional. The eccentric despot can declare that I shall be tortured on condition that I do not believe that p, regardless of whether I accept that p. His declaration gives me a state-given reason to believe that p, not a reason to accept that p. Imagine a scientific community which takes p, a proposition about unobservable entities in theoretical terms, to be their working hypothesis but adopts what van Fraassen calls constructive empiricism. The community members believe not that p is true but only that p is empirically adequate, i.e. p’s implications about what is observable by us are true (van Fraassen 1980, pp. 6–19). Membership in the community provides a reason to accept that p in one’s scientific research, not a state-given reason to believe that p. The overlap is merely contingent.
Thanks to the anonymous reviewer of Philosophical Studies for pressing me on this point.
This judgment does not entail any claim about merely possible people, those who will not exist whatever we do. The relevant claim is about a person who might be actual that it would be bad for him if he were to be born and live a miserable life (Parfit 1982, pp. 150–151).
It seems commonsensical that if the disabled child somehow manages to convince herself that her life is worth living and thus adopt positive attitudes toward her life (e.g. gratitude for having been born), she will be more likely to be happy with her situation and cope well with her disability. ‘Positive psychologists’ have conducted systematic empirical research on the beneficial effects of optimism. For example, there is evidence that unrealistically positive expectations of one’s medical condition, in conjunction with the identification of a meaning in the experience of illness, protect psychological and physical health (Taylor et al. 2000). Some research suggests that negative emotions are associated with lowered immune activity and increased susceptibility to disease, whereas positive emotions, such as joy, love and gratitude, improve psychological and physical well-being over time by broadening thought-action repertoires, fueling psychological resiliency, and building personal resources (Salovey et al. 2000; Fredrickson 2006). To some extent, positive evaluation of one’s own life is self-fulfilling; in William James’s phrase, assessment of the quality of one’s own life is ‘where faith in a fact can help create the fact’ (James 1897, p. 29).
I do not mean that believing that the life of one’s child is not worth living is conceptually incompatible with loving the child. The conflict between negative evaluation and love is psychological and thus contingent. It is reported that most parents hold unrealistically positive views of their children—more specifically, more than 80% of parents rate their own children as possessing more positive and less negative attributes than the average child. The more positively parents rate their children, the more satisfied they are with their parent–child relationship and parental experience (Wenger and Fowers 2008).
For example, according to Dworkin’s challenge model of a good life, the disability or disease is a ‘parameter’, the appropriate response to which constitutes a good life for the child, rather than a ‘limitation’ on the child’s ability to lead a good life (Dworkin 2000, pp. 260–263).
Idaho Code § 5-334; Ind. Code Ann. § 34-12-1-1; Me. Rev. Stat. Ann. tit. 24, § 2931; Mich. Comp. Laws Ann. § 600-2971; Minn. Stat. Ann. § 145.424; Mo. Ann. Stat. § 188.130; N.D. Cent. Code § 32-03-43; 42 Pa. Cons. Stat. Ann. § 8305(B); S.D. Codified Laws § 21-55-1; Utah Code Ann. § 78-11-24. In a worst case scenario, a congenitally disabled child might sue his parents for harming him by bringing him into existence. When the Curlender decision acknowledged in dicta that a seriously impaired child could bring a wrongful life suit against his parents (106 Cal. App. 3d at 829), the California state legislature immediately banned the intrafamilial wrongful life suit; see Cal. Civ. Code § 43.6. Such lawsuits would undermine our social norm about familial relationships: the unconditional love of parents for their child and the filial respect of the child for his parents.
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Acknowledgments
I would like to thank Ralf Bader, Greg Bognar, Katrina Elliott, Don Garrett, Grace Helton, Matthew Liao, Thomas Nagel, Derek Parfit, Samuel Scheffler, David Velleman, and the anonymous referee of Philosophical Studies for helpful comments on earlier drafts of this material.
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Kim, H. The uncomfortable truth about wrongful life cases. Philos Stud 164, 623–641 (2013). https://doi.org/10.1007/s11098-012-9877-8
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DOI: https://doi.org/10.1007/s11098-012-9877-8