Disabled People and the Right to Life

The Protection and Violation of Disabled People's Most Basic Human Rights

Luke Clements, Janet Read

• Publisher: Routledge
• Year: 2008
• ISBN:
  9781134134434
• Edition: 1
• Topic: Law
• Subtopic: Labour & Employment Law
• Index: Law

The most basic of human rights, the right to life, is the focus of this book.

'Human rights' has increasingly come to be seen as a significant framework, both to aid understanding of the experiences of those who face oppression, and to underpin social, legal and political measures to counter it. Disabled People and the Right to Life uses this framework to explore how disabled people's right to life is understood in different national contexts and the ways in which they are – or are not – afforded protection under the law, emphasizing the social, cultural and historical forces and circumstances which have promoted disabled people's right to life or legitimated its violation.

Written by an international panel of contributors including individuals holding public office, academics from the fields of law, social policy, disability studies and bioethics as well as practitioners and activists attempting to further disabled people's human rights, this truly interdisciplinary book will be of interest to students and researchers of disability, law, social policy and human rights.

1
Introduction

Life, disability and the pursuit of human rights

Luke Clements and Janet Read

Introduction

On 13 December 2006 the General Assembly adopted the United Nations Convention on the Rights of Persons with Disabilities. It affirms unequivocally disabled people’s right to life. The previous month however, on 6 November, the Sun, a British tabloid newspaper, under the headline ‘Kill disabled tots, say top docs’, reported that the Royal College of Obstetricians and Gynaecologists had asked for a debate on the possibility of introducing active euthanasia in some cases. The Sun reported that such practices were intended to spare parents the emotional burden and financial hardship of bringing up sick children. The newspaper invited its readers to contribute to the debate: ‘Have your say. Do you think disabled babies should be killed? Tell us what you think.’ (Sun Online, Monday, 6 November, 2006, p.1). It is difficult to imagine a newspaper inviting its readership to vote on whether any other group of UK citizens should be killed or allowed to live. The fact that the Sun saw it as acceptable to do so in relation to disabled infants, together with the issues it highlighted as germane to the debate, offers a telling reminder of the reasons why many disabled people feel that little can be taken for granted in relation to the valuations placed on their lives.

As Shakespeare (2006) indicates, end-of-life issues for disabled children and adults have been given increased public and mass media attention in Western countries in recent years. As well as the issue of active euthanasia in relation to newborn children, there have been debates about the withholding or withdrawing of treatments for babies and for adults for whom such interventions are judged to be futile and too invasive and painful. In addition, there have been proposed changes to the law in relation to physician-assisted suicide. Discussions on matters of principle have often been linked to landmark legal cases; recent examples include: in the US, concerning the withdrawal of a feeding tube from Theresa Marie Schiavo (Lazzarini et al. 2006); in Australia the withdrawal of life support (Messiha 2004); in the UK, Oliver Leslie Burke’s challenge to maintain life-prolonging treatment (Coggon 2006); before the European Court of Human Rights, the right to assisted suicide (Pretty v. UK 2002) and the failure to make available life-sustaining treatments in South Africa (Minister of Health and others v. Treatment Action Campaign and others 2002) and Ecuador (Mendoza and Ors v. Ministry of Public Health 2004).

While some end-of-life matters are irrevocably bound up with advanced medicine in developed countries, this is not the key issue for many disabled children and adults across the world who face appalling deprivations without recourse even to the most basic healthcare (see, for example, Ghai 2001). A limited but growing and important literature on disabled children and adults in developing countries indicates the extent to which the lives of many are constantly placed in jeopardy (Priestley 2001a).

This chapter employs a sociolegal approach to explore disabled people’s human rights and, in particular, their right to life. In addition to human rights law, our analysis is heavily influenced by a wide-ranging disability rights literature, and we have tried to ensure that the experiences, perspectives and rights of disabled people, insofar as they are known, are the focus of this work. In this paper, we not only explore those things that directly threaten the lives of disabled children and adults and in some cases, arbitrarily bring them to an end, we also consider some of the processes and circumstances which in one way or another, place life in jeopardy. The withholding or restricting of resources that promote and sustain life and health may have a devastating impact on life and life chances. The ways that disabled people are seen or not seen and the degree to which they are subject to carelessness, neglect, disregard or ignorance, all crucially lay the groundwork for and, in turn, may be used to legitimate violations of their right to life.

Understanding disability and the valuation of disabled lives

The ways we define and theorize disability crucially determine how we approach matters bound up with it, including end-of-life issues. But as Asch (2001:300) observes, terms such as ‘health’, ‘normality’, ‘impairment’ and ‘disability’ are highly contested: ‘Their meanings are not clear, objective, and universal across time and space and are contentious even for contemporaries in the same culture, profession and field’.

Until the late 1970s and early 1980s, in published work, the most influential and dominant ways of describing and defining disability were shaped by a Western biomedical paradigm. As Imrie (2004:289) argues, this largely reflected the medical profession’s view of the impaired body as an ‘object of scientific interest, classification and medical intervention’. The influence of such discourses with their primary focus on impairment, disorder and defect, together with their assumed consequences, went far beyond the profession of medicine. In the quarter of a century following the Second World War, the Western literature associated with all professions with responsibilities towards disabled children and adults had a marked tendency to characterize them, their personal relationships and their wider social functioning as inherently and inevitably pathological. Disabled people and those close to them were frequently problematized and there was little appreciation that disabled people might experience or aspire to things that their non-disabled peers took for granted (Philp and Duckworth 1982; Thomas 1982; Read 2000). It was considered possible by some to predict with accuracy the quality of life that disabled people and those close to them might expect, solely with reference to the type and degree of impairment diagnosed in infancy (Read and Clements this volume). Such predictions could form the basis for crucial treatment decisions with implications for the saving or curtailing of life itself (see, for example, Lorber 1975).

Biomedical understandings of disability have undoubtedly remained highly influential (Asch 2001) but across the past three decades, they have been challenged and shaped by social theories of disability. While a range of work in the late 1970s and 1980s began to acknowledge the social dimensions of disability (e.g. Blaxter 1975; WHO 1980), the major theoretical and ideological corrective to established understandings of disability came from a growing body of politically engaged scholarship which gained ground through the 1980s and 1990s, initially in North America and Western Europe. This wide-ranging work, sometimes identified as ‘disability studies’, drew variously on social science and the law to reframe disabled people’s experience and progress their rights (see, for example, Gliedman and Roth 1980; Fine and Asch 1988; Oliver 1990; Barnes 1991; Bynoe et al. 1991; Morris 1991 and 1998; UPIAS 1976). Many of the academics involved were themselves disabled and the interrelationship between the academic endeavour and the political activism of a strengthening disability rights movement was held by some to be a defining feature of the new disability studies (Abberley 1996; Bickenbach et al. 1999; Campbell and Oliver 1996).

At the heart of this work lay a central and unifying set of understandings about disability: a conviction, born of experience, that some of the most restricting and debilitating features in the lives of disabled people were not a necessary or inevitable consequence of living with impairment Rather, it was held that these restrictions were socially and politically constructed and could, therefore, be changed by social and political means. Variants of ‘the social model of disability’ gained widespread use as an approach to understanding disability. Some differences notwithstanding, there is now, according to Wasserman (2001:225), ‘a broad consensus among scholars writing about disability that the limitations associated with impairment are a joint product of biological features, environmental factors and personal goals’. Thus, as a consequence of these developing understandings of disability, it began to be seen as meaningless to consider impairment out of its social context or to use it alone as the primary indicator of present or future life experience, quality of life or life satisfaction.

Over three decades or more, disability rights scholars and activists have identified how arbitrary benchmarks of normality have been used to the detriment of disabled people (Morris 1989). ‘Normality’ is, of course, not simply a descriptive term indicating the distribution of characteristics within a given population. It is frequently value-laden and there can be disastrous consequences for those whose characteristics are considered abnormal (see for example, Read and Clements this volume). Dominant discourses have been seen to devalue disabled people and at times to define them as exceptions to commonly held notions of people and citizens. In some circumstances, they could be defined as ‘other’ and excluded from the category of what it is to be human (Shearer 1984). Asch (2001) argues that the esteem attributed to intellect, rationality, self-awareness and self-reliance leads some to question not only the quality of life of those living with cognitive or physical impairment but also their moral status. Such ideologies may be seen powerfully to have shaped civil, economic, cultural, social, legal and personal discourses in ways that ensured that disabled people were either prevented or discouraged from participating in experiences held to constitute important and expected features of the lives of those who did not live with disability. The subordination and relative powerlessness of many disabled people reinforced by damaging characterizations of their lives could be perpetuated by more powerful others, including those in the professions (see, for example, Barnes 1997; French 1994; Morris 1993; Oliver 1990).

Hand in hand with the explication and rejection by disability scholars and activists of damaging features of the social order came an insistence that the perspectives and opinions of disabled people be heard, documented and validated: that they be seen as experts on their own experience. This approach offered one means whereby disabled people could re-define themselves and their lives both publicly and personally and argue for alternatives to the status quo (see, for example, Hannaford 1985; Saxton and Howe 1988; Morris 1989 and 1991). They fought to affirm the authenticity of lives lived with impairment (Abberley 1996), asserting that being disabled was different from (rather than inferior to) being non-disabled. They challenged the dangerous and pervasive notion that disabled people’s lives were not worth living (Morris 1989) and offered an alternative vis...

Table of contents

• Contents
• Contributors
• Acknowledgements
• Preface
• 1 Introduction
• 2 Mending, not ending
• 3 Deadly currents beneath calm waters
• 4 It’s my life – it’s my decision?
• 5 Disability rights and resuscitation
• 6 Disability, human rights and redistributive justice
• 7 Human rights aspects of deaths of institutionalized people with disabilities in Europe
• 8 Demonstrably awful
• 9 End-of-life decisions in neonatology and the right to life of the disabled newborn child
• 10 The right to life and the right to health of children with disabilities before courts
• 11 Access to care and the right to life of disabled children in Bulgaria
• 12 Unheard voices
• 13 The classification of newborn children
• Index