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them, therefore, cannot be equated with killing normal human
beings, or any other self-conscious beings. This conclusion is
not limited to infants who, because of irreversible intellectual
disabilities, will never be rationaL self-conscious beings. We saw
in our discussion of abortion that the potential of a fetus to
become a rationaL self-conscious being cannot count against
killing it at a stage when it lacks these characteristics -:- not, that
is, unless we are also prepared to count the value of rational
self-conscious life as a reason against contraception and celibacy.
No infant - disabled or not - has as strong a claim to life
as beings capable of seeing themselves as distinct entities, existing
over time.
The difference between killing disabled and normal infants
lies not in any supposed right to life that the latter has and the
former lacks, but in other considerations about killing. Most
obviously there is the difference that often exists in the attitudes
of the parents. The birth of a child is usually a happy event for
the parents. They have, nowadays, often planned for the child.
The mother has carried it for nine months. From birth, a natural
affection begins to bind the parents to it. So one important
reason why it is normally a terrible thing to kill an infant is the
effect the killing will have on its parents.
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Taking Life: Humans
It is different when the infant is born with a serious disability.
Birth abnormalities vary, of course. Some are trivial and have
little effect on the child or its parents; but others turn the normally
joyful event of birth into a threat to the happiness of the
parents, and any other children they may have.
Parents may, with good reason, regret that a disabled child
was ever born. In that event the effect that the death of the
child will have on its parents can be a reason for, rather than
against killing it. Some parents want even the most gravely
disabled infant to live as long as possible, and this desire would
then be a reason against killing the infant. But what if this is
not the case? In the discussion that follows I shall assume that
the parents do not want the disabled child to live. I shall also
assume that the disability is so serious that - again in contrast
to the situation of an unwanted but normal child today - there
are no other couples keen to adopt the infant. This is a realistic
assumption even in a society in which there is a long waitinglist
of couples wishing to adopt normal babies. It is true that
from time to time cases of infants who are severely disabled and
are being allowed to die have reached the courts in a glare of
publicity, and this has led to couples offering to adopt the child.
Unfortunately such offers are the product of the highly publicised
dramatic life-and-death situation, and do not extend to
the less publicised but far more common situations in which
parents feel themselves unable to look after a severely disabled
child, and the child then languishes in an institution.
Infants are sentient beings who are neither rational nor selfconscious.
So if we turn to consider the infants in themselves,
independently of the attitudes of their parents, since their species
is not relevant to their moral status, the principles that govern
the wrongness of killing non-human animals who are sentient
but not rational or self-conscious must apply here too. As we
saw, the most plausible arguments for attributing a right to life
to a being apply only if there is some awareness of oneself as
a being existing over time, or as a continuing mental self. Nor
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Practical Ethics
can respect for autonomy apply where there is no capacity for
autonomy. The remaining principles identified in Chapter 4 are
utilitarian. Hence the quality of life that the infant can be expected
to have is important.
One relatively common birth disability is a faulty development
of the spine known as spina bifida. Its prevalence varies in
different countries, but it can affect as many as one in five
hundred live births. In the more severe cases, the child will be
permanently paralysed from the waist down and lack c?ntrol
of bowels or bladder. Often excess fluid accumulates III the
brain, a condition known as hydrocephalus, which can result
in intellectual disabilities. Though some forms of treatment exist,
if the child is badly affected at birth, the paralysis, incontinence,
and intellectual disability cannot be overcome.
Some doctors closely connected with children suffering from
severe spina bifida believe that the lives of the worst affected
children are so miserable that it is wrong to resort to surgery
to keep them alive. Published descriptions of the lives of these
children support the judgment that these worst affected children
will have lives filled with pain and discomfort. They ne,ed repeated
major surgery to prevent curvature of the spine, due to
the paralysis, and to correct other abnormalities. Some children
with spina bifida have had forty major operations before they
reach their teenage years.
When the life of an infant will be so miserable as not to be
worth living, from the internal perspective of the being who
will lead that life, both the 'prior existence' and the 'total' version
of utilitarianism entail that, if there are no 'extrinsic' reasons
for keeping the infant alive - like the feelings M the parents
- it is better that the child should be helped to die without
further suffering. A more difficult problem arises - and the convergence
between the two views ends - when we consider
disabilities that make the child's life prospects significantly less
promising than those of a normal child, but not so bleak as to
make the child's life not worth living. Haemophilia is probably
184
Taking Life: Humans
in this category. The haemophiliac lacks the element in normal
blood that makes it clot and thus risks prolonged bleeding,