Demonstrably Awful: The Right to Life and the Selective Non‐Treatment of Disabled Babies and Young Children

DOIhttp://doi.org/10.1111/j.1467-6478.2004.00300.x
Date01 December 2004
Publication Date01 December 2004
AuthorLuke Clements,Janet Read
JOURNAL OF LAW AND SOCIETY
VOLUME 31, NUMBER 4, DECEMBER 2004
ISSN: 0263-323X, pp. 482±509
Demonstrably Awful: The Right to Life and the Selective
Non-Treatment of Disabled Babies and Young Children
Janet Read* and Luke Clements**
Twenty-five years ago it was common practice to bring about the deaths of
some children with learning disabilities or physical impairments. This
paper considers a small number of landmark cases in the early 1980s that
confronted this practice. These cases illustrate a process by which external
forces (social, philosophical, political, and professional) moved through
the legal system to effect a profound change outside that system ±
primarily in the (then) largely closed domain of medical conduct/practice.
These cases are considered from a socio-legal perspective. In particular,
the paper analyses the reasons why they surfaced at that time, the social
and political contexts that shaped the judgments, and their legacy.
INTRODUCTION
Over the past twenty-five years, there have been deeply troubling cases
which centred on the highly contested issue as to whether there are
circumstances that permit parents, doctors or the courts to take a decision
that a young disabled child, often a baby, should not survive. In the United
Kingdom and elsewhere, such cases have provoked substantial debate in
medical literature and the wider public domain. The issue has emerged and
re-emerged across this period: recent examples include Re A (children)
(conjoined twins: surgical separation) (2000),
1
Glass v. UK (2004),
2
and
Portsmouth NHS Trust v. Wyatt and Others (2004).
3
482
ßBlackwell Publishing Ltd 2004, 9600 Garsington Road, Oxford OX4 2DQ, UK and
350 Main Street, Malden, MA 02148, USA
*School of Health and Social Studies, University of Warwick,Coventry CV4
7AL, England
** Cardiff Law School, Law Building, Museum Avenue, Cardiff CF10 3XJ,
Wales
The authors wish to thank Professor Nick Spencer, Professor Phil Fennell, and Professor
Tony Booth for helpful advice, David Plank for giving a valuable interview, and Katrin
Bailly for assistance with library searches.
2 9 March 2004; No. 61827/00.
3 7 October 2004; [2004] EWHC 2247 (Fam.).
This paper considers the socio-legal context of a small number of
landmark judgments concerning selective non-treatment of disabled infants
or young children: the trial of Leonard Arthur in 1981; Re B (a minor)
(wardship : medical tre atment) (1 981),
4
sometimes k nown as `Bab y
Alexandra'; the Canadian case of In re (Superintendent of Family and
Child Service) and Dawson (1983),
5
and In Re J (A Minor) (Wardship:
Medical Treatment) (1990).
6
In a paper mainly concerned with the United
Kingdom jurisdiction, the Canadian case is included because of the way it
developed the principles in Re B (1980) and in turn provided the foundations
for the key precedent case of ReJ(1990).
Much of the analysis of medical treatment cases such as these has
traditionally been the province of medical ethics
7
or medical law. This paper
seeks to review the cases in a different way, viewing them primarily as a
litmus test of the then contemporary attitudes towards disabled people. An
analysis of relevant features of that contemporary context provides indicators
as to why the cases were brought. In turn, the cases themselves together with
the associated press coverage and public debate, may be regarded as an arena
where both dominant attitudes towards disabled people and emerging
challenges to such attitudes, are played out. They expose tensions around the
most fundamental of disabled people's rights, the right to life, and they
indicate the changing benchmarks used to establish which lives were seen to
warrant protection and which were not.
These cases remind us that only twenty-five years ago it was common
practice to bring about the deaths of some children with learning disabilities or
physical impairments, particularly if their parents' social or personal situation
was `unfavourable'. What an analysis of the socio-legal contexts of these cases
also reveals is that in the United Kingdom the primary impetus for change did
not come from the civil liberties lobby (such as the National Council for Civil
Liberties) and drew no inspiration from the European Convention on Human
Rights or other international human rights treaty. This radical change resulted
from concerted action by members of the Roman Catholic church, small
numbers of progressive health and welfare professionals, and a few pressure
groups with a membership mainly of families with disabled children.
The cases of Leonard Arthur and Re B in 1981 were unprecedented in that
they brought the law to bear on issues that had hitherto been left in the
domain of professional discretion. It follows that an analysis of these cases
from the perspective of their socio-political genesis provides significant
insights into the different, overlapping, and competing worlds of law and
medicine: two powerful value systems that in this study came into conflict.
483
5 (1983) D.L.R. (3d) 610; [1983] 3 W.W.R. 618; 42 B.C.L.R. 173.
6 [1990] 2 W.L.R. 140; [1990] 3 All E.R. 930.
7 R. Gillon, `An Introduction to Philosophical Medical Ethics: the Arthur Case' (1985)
290 Brit. Medical J. 1117±19.
ßBlackwell Publishing Ltd 2004

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