Normalcy 2012 Conference Paper
‘The Expression of a Rational Moral Principle’: Bioethics versus Disability Studies
Emmeline Burdett, University College London
The field of bioethics has been defined by one of its practitioners, John Harris, as follows: ‘Bioethics
investigates ethical issues arising in the life sciences (medicine, health care, genetics, biology,
research, etc.) by applying the principles and methods of moral philosophy to these problems’.1
Problems which have particularly exercised bioethicists often involve questions concerning
impairment. Bioethicists evince an enthusiasm for ‘euthanasia’, selective infanticide and
impairment-based abortion which, says the disability studies scholar Adrienne Asch, ‘compel
scholars and activists to assert that the first right of people with disabilities is a claim to life itself’.2
The essential problem with this, as far as interactions between bioethicists and those involved in
disability studies is concerned, is that at least the vast majority of bioethicists, believe their views on
impairment to be strictly rational, and therefore, by definition, unassailable. I entitled my talk ‘the
expression of a rational moral principle’, because this was a statement made by the U.S. bioethicist
James Rachels, in his book The End of Life: Euthanasia and Morality.3 This remark was a response to
the ‘Baby Jane Doe’ case, in which a female infant born with spina bifida, associated hydrocephalus
and microcephaly was not operated on, in the expectation that her spina bifida lesion would cause
her to succumb to infection and die. Rachels used ‘Baby Jane Doe’s’ rather grim medical prognosis to
contrast prejudices such as racism with the (as he saw it) obvious rightness of letting such an infant
die: ‘Any distinction between Baby Jane Doe’s ‘life’ or (lack of it) expresses a rational moral principle,
whereas Dr Himmler’s prejudices do not’.4
Rachels’ insistence that his views are ‘rational’ is not a mere off-the-cuff expression made in passing,
but is a claim frequently made by other bioethicists, with regard to their views on impairment. For
example, in a 2001 article entitled ‘One Principle and Three Fallacies of Disability Studies’, the
English bioethicist John Harris described impairment (or, as he called it, disability) as ‘a condition
that someone has a strong rational preference not to be in’.5 The most famous bioethicist of them
all, Peter Singer, has also employed the ‘rationality’ argument on a large number of occasions. In
1989, for example, Singer was invited a lecture tour of Germany, during which his attempts to speak
publicly about his support for the selective infanticide of certain impaired new-borns were
interrupted by vociferous protests. Singer wrote that these protests struck at ‘the entire system in
which rational debate takes place’. In Singer’s view, the disabled protesters were being used by
others. It was totally inconceivable that any of them could, as a result of independent reflection,
have concluded that Singer was wrong, and that his views posed a potential threat to them. They
1
2
John Harris (ed.) Bioethics (Oxford: Oxford University Press, 2001), p.4.
Adrienne Asch, ‘Disability, Bioethics and Human Rights’ in Albrecht, Seelman and Bury (eds.), Handbook of Disability Studies (2001).
3
James Rachels, The End of Life: Euthanasia and Morality (Oxford/New York: Oxford University Press, 1986).
4
Ibid, p.63.
5
John Harris, ‘One Principle and Three Fallacies of Disability Studies’ , Journal of Medical Ethics (2001)
were ‘powerless to do anything about the chanting’. Singer warned that ‘Disabled people have
nothing to gain, and much to lose, by allowing themselves to be used by such nihilistic groups’.6
This obsession with ‘rationality’ was identified by Anne Maclean in her book The Elimination of
Morality: Reflections on Utilitarianism and Bioethics.7 Maclean wrote that ‘On the bioethical
account, then, two conditions must be satisfied if a moral judgment or decision is to count as
rationally justified. The first is that it must be supported by a reason (or with reference to a
principle); the second is that the reason (or principle) in question must be one it is demonstrably
rational to accept’.8 This afternoon Dr Wayne Morris will be looking at rationality and reason from a
theological perspective, but from a utilitarian point of view, the meaning of rationality was discussed
by Peter Singer, who explained that ‘my ability to reason shows me the possibility of detaching
myself from my own perspective and shows me what the universe might look like if I had no
personal perspective’.9 To help illustrate this, Singer tells a story about the philosopher Thomas
Hobbes. In the library one day, Hobbes found a book lying open on a page showing one theorem by
Euclid, the Greek mathematician. The proofs of Euclid’s theorems were self-evidently correct, when
read in the light of the mathematician’s axioms, or underlying fundamental principles. By the same
token, an argument can be considered to be ‘rational’ if it flows logically from a set of predetermined principles. As far as utilitarians are concerned, the paramount principle is the reduction
of pain and suffering. Singer describes this as ‘the most immediate, pressing, and universally agreed
upon … rationally grounded value’.10 Furthermore, ‘if we take the point of view of the universe, we
can recognize the urgency of doing something about the pain and suffering of others, before we
even consider promoting (for their own sake rather than as a means of reducing pain and suffering)
other possible values like beauty, knowledge, autonomy or happiness’.11 The perceived ‘urgency of
doing something about the pain and suffering of others’ is the reason why bioethicists and
utilitarians express such decided views on such subjects as abortion, selective infanticide, and
euthanasia. The cavalier disregard they show for the opinions of those who disregard them is
presumably attributable to the idea that, if you have a rational opinion, then anyone who disagrees
with you must obviously be irrational – echoes of Thomas Gradgrind in Dickens’ Hard Times. More
particularly, this dichotomy demonstrates the tension between the medical and social models of
disability. Peter Singer sees an ‘urgency’ in eradicating pain and suffering; like the medical model of
disability, he views impairment as something which affects the individual alone and has no societal
consequences. Hence his statement in 2001 that ‘in considering these issues, we need to avoid the
facile retort that disability is a social construction … No matter how much society changes, those
with disabilities will often be unable to do things that many of us take for granted.’12 The social
model of disability, first put forward by the Union of the Physically Impaired Against Segregation
(UPIAS) in 1976, by contrast, shows that impaired people do not live in a societal vacuum; on the
contrary, their experience of life is greatly affected by the interaction between them and the rest of
society. In recent years, dissatisfaction with the social model, and its perceived insistence that
societal shortcomings are the only cause of suffering to impaired people has led to the development
6
Peter Singer, ‘On Being Silenced in Germany’ Writings on an Ethical Life (London: Fourth Estate, 2002, pp.317-318.
7
(London/New York: Routledge, 1993).
8
Ibid, p.4.
9
Peter Singer, Writings on an Ethical Life (London: Fourth Estate, 2002), p.267.
10
Ibid, p.269.
11
Ibid, pp.269-270.
12
Peter Singer, Response to Mark Kuczewski, American Journal of Bioethics 1(3), (2001), pp.55-56.
of the affirmation model of disability. This model was mapped out by John Swain and Sally French,
and was later developed by Colin Cameron. Cameron pointed out that the affirmation model as it
then stood had no definitions – ‘We are told what it is like but not what it is’.13 So Cameron set about
developing some definitions, and here they are:
Impairment Physical, sensory and intellectual difference to be expected and respected on its own
terms in a diverse society;
Disability The loss or limitation of opportunities to take part in community life on an equal level with
others due to physical and social barriers.
Colin will tell you more about the affirmation model of disability this afternoon. I want to end my
talk with a question. Earlier we were looking at bioethicists and their insistence that toleration of
disability, which they interpret as pain and suffering and nothing else, could never be anything other
than an irrational point of view. Does the existence of clearly defined categories for thinking about
questions of impairment and disability mount a sufficient challenge to, or even invalidate,
bioethicists’ claims about the rationality of their own views on the subject?
13
Colin Cameron, Does Anybody Like Being Disabled? A Critical Exploration of Impairment, Identity, Media and Everyday Experience in a
Disabling Society, (PhD Thesis, 2010), p.27.