Attitudes, Souls and Persons: Children with Severe ...

MENTAL RETARDATION AND DEVELOPMENTAL DISABILITIES
RESEARCH REVIEWS 9: 16–20 (2003)

ATTITUDES, SOULS, AND PERSONS: CHILDREN
WITH SEVERE NEUROLOGICAL IMPAIRMENT†

Carl Elliott*

Center for Bioethics, University of Minnesota, Minneapolis, Minnesota

What I want to do here is not so much to construct an way the balance of pleasure and pain tilts.1 Some severely
argument as to confess some misgivings. My misgiv- impaired children will be in unremitting pain, and then we can
ings concern children of a special kind who are say with some confidence that the balance tilts toward with-
familiar to anyone who has spent much time around a pediatric holding or withdrawing treatment. But what about children
hospital. These are children who are profoundly, irreversibly who are not in pain, but who lack (and will always lack) the
neurologically damaged. I do not have in mind children who are capacity to think, to communicate, to give love, or to be
simply developmentally delayed. I mean children who will conscious of receiving it? The answer to the question of whether
never be able to speak, to walk, to sit up, or to feed themselves. such children have an interest in continued life will often be a
Sometimes they are blind or deaf. Their intellectual abilities are tentative “yes.” But it will be a “yes” tinged with hesitation and
extremely limited, often so much so that they have never been uncertainty, because the question seems to skirt the more fun-
able to recognize their own parents. The cause of their condi- damental problem, which is whether the language of “interests”
tion is often anoxic brain injury or head trauma, or perhaps, less really captures what is morally at stake. Can we do no better
commonly, a genetic condition with neurological effects. than to think of these children as repositories of pleasure and
pain?
What do we make of these children? How are we sup-
posed to treat them? There is often no reason to doubt that with Personhood and Thick Ethical Concepts
the proper kind of care they could live for many years into One well-traveled avenue that philosophers addressing
adulthood. They require an extraordinary degree of attention,
and not just by health care workers. Their parents often look like these issues have taken is the one that leads to the question,
war veterans, exhausted and shell shocked. Inevitably, questions “What is a person?” The idea here, of course, is that in order to
arise as to how aggressively to treat these childrens’ medical determine the moral status of severely damaged or limited
problems—whether to treat a pneumonia, or replace an intra- human beings, we must ask ourselves whether or not they are
cranial shunt, or start dialysis, mechanical ventilation, or tube persons. Why? Because we all know, more or less, what the
feedings. These are burdensome interventions, most of them, moral status of a person is—that persons deserve a certain kind
but interventions that can often prolong a life. of respect, that they have rights, that we owe them duties that
we do not owe animals or nonsentient life, and so on. If a
Parents and pediatricians invariably want to do what is best neurologically damaged child (or for that matter, an anence-
for the child. But when they ask me what I think would be best, phalic, a fetus, or an adult in a persistent vegetative state) is a
I am at a loss as to how to respond. Best interests? What are the person, then we must treat her morally as we treat other persons.
interests of such a child? Sometimes they seem to take pleasure But if she is not, then we are justified in treating her in other
in being stroked or being in the water; on the other hand, they ways—say, as a being whose interests can be safely overridden
often feel pain—from spastic limbs, perhaps, or more often, for the interests of those who are persons.
from the medical procedures they have to undergo. Are they
loved? Yes, often very deeply. The lives of entire families are So how do we tell what a person is? By their capacities:
often structured around the care of such children and are marked intelligence, speech, self-consciousness, abstract thought, the
by a special kind of grace and tragedy. Often the parents and ability to relate to others, and so on.2 So, the argument goes, the
siblings of such children have made personal sacrifices of heroic reason we might be inclined to say that these severely damaged
proportions, but are still haunted by guilt for what they have not
done, or for the things they have secretly wished for. The irony †From: Slow Cures and Bad Philosophers: Essays on Wittgenstein, Medicine, and Bioethics,
is that the object of this guilt and sacrifice and love is totally pp. 89 –102, 2001. Edited by Carl Elliott. ௠ 2001, Duke University Press. All rights
unaware of it. How are we supposed to think about a life like reserved. Reprinted by permission of Duke University Press.
this from a moral point of view? Does it make any sense to think *Correspondence to: Carl Elliott, Associate Professor (Philosophy, Pediatrics), Director
about the “best interests” of such a child? of Graduate Studies, Center for Bioethics, University of Minnesota,
Suite N504 Boynton, 410 Church Street SE, Minneapolis, MN 55455. E-mail:
In his classic article “Toward an Ethic of Ambiguity,” [email protected]
John Arras points out that when a child is devoid of any of the Received 5 December 2002; Accepted 11 December 2002
capacities we think of as distinctly human, asking about his or Published online in Wiley InterScience (www.interscience.wiley.com).
her “best interests” amounts to little more than asking which DOI: 10.1002/mrdd.10054

© 2003 Wiley-Liss, Inc.

children are not persons is that their ca- Thick ethical concepts like coward, bully, opinion that he has a soul”). Rather, the
pacities, and their potential to develop cruel—and, so I would argue, person— attitude—an attitude toward a soul—is
these capacities, are so limited. If you map onto things in the world, like purely built right into the language that we use
cannot and will never think, speak, un- factual concepts, but they also represent to describe him.
derstand language, or form a relationship ethical evaluations of those things onto
with others, you are not a person and which they are mapped. In other words, Our uncertainty about severely
therefore do not have the moral status of to call a person a coward or cruel is to damaged children, it seems fair to say, is
a person. Englehardt, for example, argu- pick out and describe something about less about whether they are properly de-
ing that adults are persons because of the him, in the same way as calling him a scribed as “persons” than about what at-
fact that they are free, rational, and re- father or a Canadian, but it is also to titude toward them it is appropriate to
sponsible for their actions, concludes that communicate a particular type of ethical adopt and what language best expresses
even normal children are not persons: “If evaluation. And the ethical evaluation is this attitude. The problematic ethical
being a person is to be a responsible not something that follows from the de- questions that bioethicists tend to ask
agent, a bearer of rights and duties, chil- scription, nor is it a kind of add-on, or about such children— can we allow this
dren are not persons in a strict sense.”3 attachment. It is built right into the child to succumb to an easily treatable
meaning of the word.5 pneumonia? are we obligated to ventilate
So what is wrong with this ap- a vegetative patient indefinitely at the
proach? Part of the problem is its (unstat- This is the reason it is misguided to parents’ request? can we transplant a
ed) view of the philosopher’s role: as a think we can decide what beings are per- heart from an anencephalic child?—are
kind of language czar, who devises stan- sons by purely factual criteria. To try to problematic exactly because they are sit-
dards for the use of words and tells the devise purely factual criteria for applying uated within this broader uncertainty. If
linguistic community how to use them. the word “person” is like trying to devise we are uncertain how to answer these
“Person” is thus transformed from its or- purely factual criteria for applying the ethical questions, it is because our
dinary use to a technical, philosopher- word “coward.” Criteria for being a broader, more general attitudes toward
defined use, which, on Englehardt’s con- coward that made no mention of any these children are themselves ambivalent
ception, does not include children. But kind of ethical evaluation—that did not and poorly articulated.
the point of this kind of definitional ex- convey that cowardice involves a failure
ercise, while widely accepted (at least im- of courage, that to call a person a coward Now, to take up this sort of atti-
plicitly) in analytic philosophy, is by no is to insult him, that to behave like a tude toward a human being—an attitude
means clear, nor is the exercise practically coward is something that one ought not toward a soul—is in part to recognize
useful in any obvious way. In any case, it to do, and so on—such criteria would that she is the proper object of certain
is subject to the kinds of criticisms that not be able fully to convey the meaning moral attitudes. That is, it is to recognize
Wittgenstein levelled against philosophi- of the word. Indeed, it is hard to see how that we have duties toward her, that she
cal theory: “It is not our aim to refine or one could understand how people apply has rights, and so on. But an attitude
complete the system of rules for the use a thick ethical concept without sharing (if toward a soul, I want to suggest, is not
of our words in unheard-of ways” not actually, at least imaginatively) the solely a moral attitude. It encompasses all
(PI § 133). evaluative component. Without at least the complex ways that we treat our fel-
an imaginative understanding of what low human beings. Some of these may
A more damaging problem with sort of evaluation is carried by words involve moral attitudes, such as the idea
this approach, however, is the way it such as “coward,” “cruel,” or “person,” that all human lives have dignity, or that
confuses what Wittgenstein would call these concepts would simply be arbitrary all lives are to be valued equally. But
the “grammar” of the word “person.” It ways of dividing up the world.6 others seem closer to matters of custom,
suggests that “person” is a factual term, manners, or tradition, such as the idea
one that can be answered by looking at a Attitudes and Souls that a person should be referred to by a
being’s capacities or potential for devel- In the Philosophical Investigations, name, or that when a person dies she
oping those capacities. But then it as- should be given a funeral. Our moral
sumes that the answer will give us moral Wittgenstein writes, “My attitude to- attitudes are situated within this much
guidance: tell me if this is a person, and I wards him is an attitude towards a soul. I broader family of attitudes.
will tell you what you ought to do. This am not of the opinion that he has a soul”
expectation is, however, deeply con- (PI § 178). I want to suggest that to treat All this is to say that our ambiva-
fused. “Person” is a moral term, not just a severely neurologically damaged child lence about how to behave toward these
a factual one, and the question “Is this as a person— or, in Wittgenstein’s more severely damaged children is not solely a
being a person?” is itself a moral ques- apt phrase, as a “soul” —involves taking moral ambivalence. It is a broader am-
tion. up a certain attitude toward him. By “at- bivalence about what attitude is appro-
titude,” I mean the kind of stance im- priate to such damaged, limited human
“Person” is what philosophers such plicit in our dealings with other persons, lives. Let me give an example. I would
as Bernard Williams would call a “thick” such as the recognition that a person de- find it very disturbing, though not in any
ethical concept, one that represents a fu- serves a special kind of respect, that he or strictly moral sense, to see parents hold a
sion of fact and value.4 Thick ethical she is to be given a proper name (rather birthday celebration for an anencephalic
concepts are unlike the very general eth- than, say, a number), that he or she is to child—to bring him a cake, put a birth-
ical concepts such as good and ought upon be referred to with the pronouns “he” or day hat on him, sing to him, and so on.
which moral theorists have tended to “she” and “him” or “her” rather than Why? Partly, perhaps, because the child
concentrate, and whose meanings are al- “it,” and so on. Taking up this attitude will never be capable of recognizing the
most entirely evaluative. But they are also toward a person does not follow neces- significance of the event; partly also be-
unlike purely factual words such as sarily from any fact about him; it is not a cause the celebration would remind me
“curly,” “purple,” or “carrot.” They logical consequence of anything that I of the gap between an anencephalic and
have both factual and evaluative ele- believe about him (“I am not of the ordinary children, like my own. But I
ments; that is, they fuse “is” and “ought.” think these are part of a larger reason,

MRDD RESEARCH REVIEWS ● ATTITUDES, SOULS AND PERSONS ● ELLIOTT 17

which is that a birthday celebration im- is gesturing toward when he writes, “The extends to such severely damaged chil-
plies that an anencephalic is a child like human body is the best picture of the dren.
any other. And celebrating the birth of an human soul” (PI § 178). Anencephalics
anencephalic suggests that we take up the are, after all, living infants who often But putting it this way makes
same attitudes towards her that we take look very much like ordinary infants. It things sound simpler than they are. It
toward other children: that this child will should not be all that surprising that sounds as if the attitudes we take up
be a part of the family like any other many people (especially parents) find it toward other beings are essentially a mat-
child, that her life will have a narrative difficult to take up the same attitude to- ter of what we decide. But this is not quite
like that of an ordinary human being, ward them that we do towards objects or right. Our attitudes toward other beings
from birth through childhood and adult- even corpses. are rooted in, if not exactly instinctive
hood to death. It suggests that this is the behavior, still more or less thought-free
kind of being for which a birthday cele- Yet neither is it easy to take up the behavior—reactions rather than con-
bration is appropriate. And what seems same attitudes toward them as toward scious deliberations. (This is part of why
painfully obvious is that an anencephalic ordinary human beings, and it should not Wittgenstein contrasts attitudes with
is not such a being; that the reasons why be surprising that the attitudes of doctors opinions.) Now, I do not mean to sug-
we celebrate a birthday are absent here; are often much different from those of gest that all of our dealings with other
that the passage of another year of life can parents, or even the lay public. When I persons are mechanical and without
have no meaning for a being without a was a thirdyear medical student, my ro- thought—that we do not make conscious
cortex. tation in internal medicine took place at decisions to argue with other people, or
the county hospital in Charleston, South to flirt, or to joke with them. What is
Now, by saying that taking up such Carolina. I can remember following one does mean is that in the background of all
attitudes would not be morally disturb- of the interns on ward rounds, a partic- this behavior is the attitude that this is the
ing, I do not mean to trivialize them or to ularly sharp and easygoing man who, kind of being with which you can argue
imply that they would have no moral when the rotation began, took the time and flirt and joke. And this attitude is not
resonance. I only want to make the point to introduce me to each patient on the something that we ordinarily decide
that these attitudes should not be reduced ward, most of whom were (this being a upon; it is simply what we do. As Witt-
to their moral components; that the word county hospital in South Carolina) poor genstein says, “The essence of the lan-
“moral” does not fully capture what it is and black. We passed through the room guage game is a practical method (a way
to take up such an attitude; and that of one patient, an elderly woman who of acting)—not speculation, not chatter”
when we take up the wrong attitude, it was, if not permanently vegetative, very (PO, p. 399).
does not seem quite right simply to call close to it. She was getting no treatment
the attitude immoral. I might say, for other than tube feedings and hydration. Now, does this mean that what
example, that it is immoral for parents to The intern’s instructions to me were attitude we take toward another being is
refuse to give their children names, or, roughly this: “Think of it this way. She’s something over which we have no con-
even worse, to give them names like, say, a plant; you’re the gardener; your job is trol, or that it cannot be influenced by
Fluffy, or Rover; it is immoral, but it is to make sure she is watered.” And then the will? Of course not. To take a super-
not simply immoral. It seems closer to the we moved on to the next patient. ficial example: think, for example, of the
truth to call it unsettling, or even just different attitudes a doctor takes toward a
creepy, because it seems to represent an To understand why this kind of human being, first, when he is percussing
inappropriate attitude to take up toward a remark is in equal parts callous, deeply his chest, and next, when he is playing
child. It suggests the attitude one takes embarrassing, and, in a despairing way, against him on the basketball court. An
toward a thing or a pet; it denies the child weirdly appropriate, you probably will attitude toward a human being as the
her humanity. Many of us would find it need to have spent some time in a county object of a diagnostic examination is dif-
deeply disturbing. But the reason is the (or Veterans Administration) hospital, ferent from an attitude toward a human
reverse of the reason the birthday cele- where exhausted and often bitter resi- being who is about to take you to the
bration for an anencephalic is disturbing, dents take care of America’s sick and hoop. Patients are different from oppo-
which is that the celebration seems to disabled poor. This is the vacuum in nents. And which attitude you take up is
attribute to that child a humanity that she which attitudes toward severely impaired more a kind of unconscious reaction, de-
does not have. patients develop, and the intern’s remark pending on the context, than a conscious
reflects those attitudes: hostility at having decision. It is less like changing your
This may help to explain some of to take care of such a patient, a sense of mind than like falling back into a habit.
the rancor and division over the issue of futility surrounding her future, and a sen- Another way to put this point is to say
using anencephalics as organ sources. sibility trained to ignore deeper questions that our attitudes toward other beings are
Opposition has little if anything to do surrounding life and death. built into the language that we use to
with cruelty, suffering, or violations of describe them, and the language is em-
rights, but rather is often expressed in Forms of Life bedded in a way of behaving toward
terms like “dignity” and “respect.” This Another way of making these them—what Wittgenstein calls a “prac-
kind of language expresses a discomfort tical method.” This practical method is
with the attitude toward the anence- points would be to say that we have not something that is best described as
phalic that using them as organ sources developed a certain kind of language that deliberative action, but something that is
seems to represent. It comes close to we use in describing ordinary persons, reactive and habitual. As Wittgenstein
treating them as objects or things. But their behavior and mental lives, and our puts it: “The origin and the primitive
what is wrong with treating them as ob- behavior toward them. It includes not form of the language game is a reaction;
jects, one might say? They are nevercon- only moral language, but also the lan- only from this can more complicated
scious beings, more like corpses than hu- guage of religion, kinship, ritual, politics, forms develop. . . . Language—I want to
man beings. The answer, I suspect, has and so on. The moral question is say—is a refinement. ‘In the beginning
something to do with what Wittgenstein whether, and in what ways, this language was the deed’” (PO, p. 395). This point

18 MRDD RESEARCH REVIEWS ● ATTITUDES, SOULS AND PERSONS ● ELLIOTT

is connected to another problem in the severely damaged children have an inter- a kind of family property, or whether
debate over personhood, or the quest to est in avoiding pain and in things that they think of a damaged child as a kind of
find some key difference between these give them pleasure, but we cannot say curse or divine retribution, or whether
severely damaged children and a person much more. It is even hard to say, stick- they think of the deaths of a number of
and to put your money on that difference ing solely to the language of interests, small children as natural or unavoidable.8
as the morally crucial characteristic. Phi- why severely damaged children like this In such contexts one can imagine the
losophers have tried on various occasions have an interest in avoiding things that death even of a less severely impaired
to name, as the morally crucial character- many people have a gut reaction against, child to be a matter of indifference, or
istic, consciousness, the capacity for like being used as a living organ donor, even something to be desired. But these
speech, and the capacity to feel pain, or being anesthetized and used as teach- are not the ways we in industrialized
among many others. The point I would ing instruments, or, to use an example Western countries have come to think of
like to make, following Cora Diamond, from a science fiction short story, having children. We have inherited a certain
is that it is not enough just to ask whether their skin used as handbag leather after ideal of the family and its importance,
a given characteristic is morally impor- they die. If we want to say why we find and while our attitudes toward children
tant; we also have to ask what a particular such things repellent and horrifying, we are complex and often contradictory, it is
group of human beings has made of that usually fall back on concepts such as certainly true that we devote consider-
characteristic.7 A biological characteristic harms to dignity or the “symbolic value” able resources to thinking about the
becomes something for moral consider- of a body, which may not explain much rights of children and our duties towards
ation when human beings make some- but at least get us closer to the idea that them.9 We treat them as, if not ends in
thing of that characteristic: in their reli- these actions represent objectionable at- themselves, at least ends to be, and many
gion, art, literature, rituals, institutions— titudes toward such children. people think of their children as the most
and in their ethics. In some cultures a precious and important things in their
young girl’s menarche is of tremendous CONCLUSION lives. Whatever attitudes we hold toward
moral significance, while in others it is I have tried to express some of my severely neurologically damaged children
not. Some cultures make a lot of the will have to be reconciled with these
differences between men and women, misgivings about the notion that we can more general attitudes toward children
while others do not. Menopause is im- decide how to behave toward neurolog- and family life.
portant for some cultures, for others not. ically damaged children based solely on
The birth of twins may be, depending on their capacities, or even by asking what is Finally, and perhaps most crucially,
the culture, a sign from God, a curse, or in their interests. How we think about whatever our attitudes toward severely
nothing other than a reason to dress the and behave toward them is tied to the impaired children, they will have to be
children alike and give them rhyming attitude we take toward them, which is reconciled with broader cultural under-
names. My point is that saying something in turn tied to a form of life. But what standings about the purpose and signifi-
about the moral significance of these bi- does this tell us? cance of human life. By this I mean not
ological characteristics (or lack thereof) is just what Wittgenstein calls Lebensformen,
not just a matter of saying something First, it suggests that there is no or forms of life, but that dimension of
about those characteristics themselves, single morally correct attitude to take Lebensformen relating to questions such as
but of the form of life in which those toward such infants, but rather a range of what constitutes a meaningful life, or
capacities do or do not make a difference. attitudes, which are in turn embedded in when a life has sense, or what kind of life
particular cultures. It would not surprise counts as a success or a failure. Different
Think, for example, of the ways me, for example, to hear an anthropolo- cultures and different eras have asked and
that we North Americans distinguish be- gist speak about one culture that revered answered such questions in dramatically
tween the concepts of pets, livestock, and such damaged children and another cul- different ways, of course, and many in-
vermin. In the case of rabbits, there are no ture that simply discarded them, and that dividuals may answer them differently
biological differences that distinguish be- each attitude was tied in complex and even within a single culture, especially in
tween the categories. We eat rabbits as subtle ways to the culture’s religion, immigrant countries such as the United
livestock, we keep them as pets, and we structures of kinship, beliefs about health States and Canada. But understandings
poison them as vermin when they get and illness, and so on. Even in our own about questions such as these form the
into the garden. Our attitudes toward (Western) culture(s) we hear a broad backdrop against which human practices
rabbits differ dramatically in all three range of opinions on the appropriate be- take place and help shape our concep-
cases, and so does the way we treat them havior toward such children that touch tions of the moral dimensions of those
morally, but these differences do not de- on everything from infanticide to disabil- practices, including our actions regarding
pend on their biological characteristics. ity rights to the sacredness of every hu- severely impaired children.
Another example: Westerners, unlike man life. The capacities and interests of
many Asians, find it horrifying and repul- such damaged children do not give us, or What is particularly difficult to rec-
sive to think about eating a dog. Is this any culture, a determinate answer on oncile here are our attitudes toward such
explainable in terms of the dog’s charac- how to behave toward them. And how children and certain widely shared West-
teristics? No, or at least not wholly; and if we do behave toward them cannot be ern views about the meaning of human
you want to understand why a people thought about separately from all of our life. I have in mind the cluster of convic-
find this horrifying, you have to under- other cultural resources. tions surrounding what Charles Taylor
stand what a culture has made of these calls “the affirmation of ordinary life.”10
characteristics. Second, I do not believe we can These convictions locate significance in
completely separate how we think about things like our families and the people we
This helps explain why, in the case damaged children from the way we think love, but also in meaningful work—the
of neurologically damaged children, con- about ordinary children. A culture might satisfaction of artistic or literary creativ-
structions such as “best interests” often well think about severely damaged chil- ity, the sense of higher mission involved
seem less than helpful. We can say that dren in very different ways depending in social or political activism, the gratifi-
on, say, whether they think of children as
19
MRDD RESEARCH REVIEWS ● ATTITUDES, SOULS AND PERSONS ● ELLIOTT

cation of doing a job well, the fulfillment very different kind of life that lies ahead (Bloomington: Indiana University Press,
of a moral duty to provide for one’s for such a child.11 1992), pp. 198 –215; Michael Tooley, “Abor-
family and loved ones. These kinds of tion and Infanticide,” Philosophy and Public
convictions locate significance largely in This may help us to understand the Affairs 2, no. 1 (1975): 29 – 65; John A. Rob-
the individual and how he or she chooses internal contradictions of clinical deci- ertson, “Involuntary Euthanasia of Defective
to live a life. Thus, the significance of a sions for these children and the reasons Newborns,” Stanford Law Review 27 (1975):
life is intimately tied to the choices a why they often appear so intractable. On 246 –261; Daniel Dennett, “Conditions of
person makes, which may involve, for the one hand, we are understandably Personhood,” in The Identities of Persons, ed.
example, developing a relationship with wary of withholding or withdrawing Amelie Oksenberg Rorty (Berkeley: Univer-
God, fulfilling a calling, carrying out beneficial treatment for such children. sity of California Press, 1976); and various
one’s duties, or many other things. We are the inheritors of a strong tradition essays collected in What Is a Person? ed. Mi-
of rights and equality that makes us re- chael F. Goodman (Clifton, N.J.: Humana
What makes these understandings luctant to withhold treatment from a per- Press, 1988).
about the significance of life difficult to son on the grounds of her intelligence or 3. Englehardt, “Ethical Issues in Aiding the Death
reconcile with our attitudes toward chil- disabilities. We also see that the lives of of Young Children,” p.120.
dren is that such understandings make a these children may have deep signifi- 4. Bernard Williams, Ethics and the Limits of Philos-
meaningful life inaccessible to any child cance for their families. Yet on the other ophy (Cambridge, Mass.: Harvard University
with severe neurological impairment. hand, we recognize that these lives fail to Press, 1985), p. 129.
(And, for that matter, to many children meet the criteria by which we count our 5. Cora Diamond has made this point more force-
and adults with less serious damage.) If a own lives as meaningful. We try to con- fully than I have here in her extraordinary
person will never be capable of appreci- vince ourselves that we should protect essay “Eating Meat and Eating People,” in
ating the emotional bonds of family, will vulnerable lives, but we cannot imagine The Realistic Spirit: Wittgenstein, Philosophy,
never be able to find meaning through this as a life we would want to continue and the Mind (Cambridge, Mass.: MIT Press,
the life of work, and will never be able to living. We say all lives deserve respect, 1995), pp. 319 –334.
return love to another human being, but our measure of the good life for 6. Williams, Ethics and the Limits of Philosophy, p.
then she will not be able to live the kind ourselves does not include a life like this. 141.
of life to which many Western cultures We say that all lives are equal in the eyes 7. See Diamond, “Eating Meat and Eating People.”
give meaning. This is not the only way of of God, but we wonder why God has 8. For two very different cultural worldviews and
seeing the lives of such children, of allowed such a life to come into being. their relationship to children, see, e.g., Nancy
course. Things might be otherwise in Scheper-Hughes, Death without Weeping: The
cultures where meaning is bound up NOTES Violence of Everyday Life in Brazil (Berkeley:
with a being’s place in the natural order, University of California Press, 1992) and
or with the transmigration of souls, or 1. John Arras, “Toward an Ethic of Ambiguity,” Anne Fadiman, The Spirit Catches You and You
any number of other cosmologies. But Hastings Center Report 14 (Apr. 1984): Fall Down: A Hmong Child, Her American Doc-
these are not the cosmologies that form 2533. tors, and the Collision of Two Cultures (New
the selves of most Westerners. Perhaps York: Farrar, Straus and Giroux, 1997).
this is why the lives of profoundly dam- 2. For a sampling of such writings on personhood, 9. For a provocative and deeply moving account of
aged children strike many Westerners as see H. Tristram Englehardt, “Ethical Issues in some of these contradictions, see John D.
especially tragic. These children throw Aiding the Death of Young Children,” in Lantos, Do We Still Need Doctors? (New York:
into vivid relief the contrast between the Intervention and Reflection: Basic Issues in Med- Routledge, 1997).
kind of life that allows us to achieve the ical Ethics, 4th ed., ed. Ronald Munson (Bel- 10. See Charles Taylor, Sources of the Self The Mak-
goods that make life worth living and the mont, Calif.: Wadsworth, 1992), pp. 119 – ing of the Modern Identity (Cambridge, Mass.:
126; Joseph Fletcher, “The Cognitive Harvard University Press, 1989).
Criterion of Personhood,” Hastings Center Re- 11. One of the few works I know of that takes on
port 4 (Dec. 1975): 4 –7; Mary Anne Warren, these deeper questions about dying children is
“The Moral Significance of Birth,” in Femi- the wonderful essay by Margaret Mohrmann,
nist Perspectives in Medical Ethics, ed. Helen “Are Children Our Future? Reflections on
Bequaert Holmes and Laura M. Purdy Destiny and Dying Children,” presented at a
conference on Bioethics and Human Destiny:
Jewish and Christian Perspectives, Loma
Linda Center for Christian Bioethics, Loma
Linda, California, February 1997.

20 MRDD RESEARCH REVIEWS ● ATTITUDES, SOULS AND PERSONS ● ELLIOTT