Valuing Profoundly Disabled People

Fellowship, Community and Ties of Birth

John Vorhaus

• Publisher: Routledge
• Year: 2017
• ISBN:
  9781317498940
• Edition: 1
• Topic: Philosophy
• Subtopic: Philosophy History & Theory

Growing numbers of human beings live with profound and multiple learning difficulties and disabilities. Exploring the moral, social and political implications of this trend, Valuing Profoundly Disabled People addresses questions that are high on policy and practice agendas in numerous regions around the world, including the UK and the EU, the USA, and Australasia.

In this important work Vorhaus examines fundamental moral and social questions about profound disability, and each chapter combines a comprehensive review of existing literature with thought-provoking and original philosophical arguments. Vorhaus argues that there is a pressing need to consider the moral and political claims of people whose lives are characterised by extensive impairments, dependency and vulnerability. The book prompts readers to reflect on complex issues relating to the practices of caring, teaching and treating people with profound disabilities in contexts such as education, health care and social policy.

Providing a much-needed contribution to the field, this book will be of interest to postgraduates, academics and researchers in a number of distinct and interrelated fields, including disability and impairment, human rights, philosophy, sociology, health and social policy, and education. The book will also be of great interest to practitioners and policymakers seeking to promote the aims of realising human potential and respecting disability.

Chapter 1

Introduction

The project

People with profound and multiple learning difficulties (PMLD) represent a tiny fraction of the world’s population,¹ and the level of dependency and cognitive impairment characterises this group as quite unlike most other human beings. Why, then, would the subject of valuing these few and unusual people lend itself to philosophical enquiry? Reflection on profound impairment naturally leads on to thoughts about humanity, equality, dignity, respect, dependency and citizenship, and these thoughts, whilst inspired by and centred on people with PMLD, can illuminate an understanding of how we value human beings generally, and not only those with profound impairments. This, at any rate, is what I hope to demonstrate.

The category ‘profound and multiple learning difficulties and disabilities’ applies to people with varying levels of cognitive impairments.² For a small number of these people, the impairments are so extensive that they are unable to vocalise, respond to the simplest cues or give evidence of their basic needs. Some writers ask whether these human beings even qualify as persons. One question I wish to pursue is whether there are reasons to value human beings that are no less pressing because they are profoundly cognitively impaired, including those whose status as persons is uncertain.

The value of human beings is expressed in how we feel about them and behave towards them, and in the status they are accorded. I am principally concerned with the moral status of human beings, with what we owe to them, and also their political status, their entitlements and their claim to citizenship.

Some reasons for valuing human beings are related to accomplishments, qualifications and the capabilities required for employment and the holding of public office. Other reasons are unrelated to credentials and talents: all human beings are thought to have a fundamental worth or dignity, recently acknowledged in the form of universal human rights, some of which absolutely proscribe torture, inhuman and degrading treatment. This is an uncontroversial example. More controversial is citizenship, and its panoply of rights and entitlements, which has been regarded as a status owed to all human beings, including those who are unable to exercise any of the associated rights, either by themselves or with assistance. A different kind of example is found in the claim that any human being is ‘one of us’, which is intended less as a statement about rights, and more as an expression of the idea that, however much someone is impaired, she is fully our fellow creature and must be treated as such. The ways in which we value people are variously sensitive to their individual characteristics; I shall be looking into the claim that we have reasons to value human beings that are not at all sensitive, or are largely insensitive, to the magnitude of their impairments.

No one suggests that we cannot value one person as much as another simply because the first person has a facility for music or mathematics or sport, whilst the other has no such facility. But if the second person also has no capacity for language, or rationality or autonomy, and her psychological capacities are less extensive than those of high-functioning non-human animals, we may well ask why her value must be equivalent to or higher than the value of other creatures who possess the capacities and potential that she lacks. After all, once we take into account the actual and potential psychological capacities intrinsic to an individual what else is there to consider in any account of her moral status? This is the question that moral individualists press against those who would find the basis of valuing human beings in a source other than in an individual’s psychological profile, and this question animates many of the discussions that follow.

On many views canvassed in this book we cannot consider an individual’s psychology as irrelevant to the source of her value; discussion of actual and potential capacities is therefore central too much of the argument presented here. The capacities of people with profound impairments are often underestimated, owing to ignorance, error, prejudice and conservative assessments of the enabling contributions of assistive technology and enlightened pedagogy. Most people with PMLD have or are capable of acquiring a rich repertoire of expression and behaviour, such that comparisons with other human beings are either less unfavourable than might be supposed or are not at all unfavourable. To see this it is necessary to explore the capacities of profoundly disabled people – to contribute to human relationships, to enjoy creative and humorous interaction, and to participate in the social life of a family, school and community. It is necessary, also, to explore the dependencies associated with profound disability – how these compare with the dependencies of unimpaired people, and how dependency is related to reciprocity and interdependence.

Discussion of capabilities and dependencies is largely taken up with the characteristics of individuals, and these characteristics, I will suggest, do not alone determine the value of human beings. Other things matter: identification and solidarity, species membership and the symbolic importance of rights and practices that confer or withhold status and standing. Each of these items is suspect: how can the mere fact of identifying with someone bestow value on that person, and where does that leave people no one identifies with – the shunned and the isolated? Is an appeal to species membership simply a resort to the sort of prejudice that is characteristic of racism – an appeal that has the effect of excluding and denigrating anyone who is not ‘one of us’? And how does whatever symbolic importance our basic rights may possess have any bearing on how we should value the right-holders? I have something to say in response to each of these questions; about the importance of the fact that all profoundly disabled people are ‘human born’, the disposition to identify with members of our own kind and the symbolism attaching to our norms and conduct. I have not, however, shown how these elements combine, either with each other, or with facts about individual psychology, so as to contribute to a single account of valuing human beings, and I should say more about this before going any further.

Each of the chapters explores one aspect of the moral and political status of profoundly disabled people, and whilst they are all of a piece they do not amount to a systematic treatment of these subjects. Some writers have attempted a theory of the moral status of all human beings, which includes an account of the moral status of people with profound disabilities and other people who might be thought to represent special or hard cases – fetuses, for example, or people in the later stages of dementia.³ Other writers offer political theory on a similar scale; contractualists and contractarians, for example, who must determine the class of persons to whom social contract theory applies, and whether this should include such groups as young children, persons with dementia and profoundly disabled people.⁴ Nothing of the kind is offered here, and this is a limitation; any comprehensive treatment of the moral and political status of profoundly disabled people will explain how they fit into an account that encompasses all human beings, and not only minority groups. At the same time, it is not obvious that what best serves understanding of the value of profoundly disabled people is a philosophical theory. There may be limitations to what ethical theory can offer in this domain, for reasons that Williams has made familiar (Williams 1985); and it may be that some of the subjects discussed here cannot all be made to fit within one and the same account. Why assume, for example, that an understanding of what makes for the disrespectful treatment of profoundly disabled people should fall within the compass of a theory that also offers an account of their contribution to the social life of their families, schools and communities? For this writer, at any rate, the task of elucidation proved enough to be going on with, and the principal task undertaken here, therefore, is some elucidation of the value of profoundly disabled people, making sense of the valuable features of their lives, and of the value of their lives as a whole. The means deployed are arguments, and naturally these are to be judged on their merits. But I invite readers to assess the material not only on how it may contribute to a theory about valuing humans but also on how far it illuminates what we should be looking at and at how we might fruitfully do this. Some of what is written about – profoundly disabled people as ‘one of us’ and ‘our fellow creatures’ – is often thought to be obscure or rooted in error; this book is in effect an invitation to think otherwise and to entertain the idea that the value of profoundly disabled human beings reflects not only their individual psychological characteristics but also their membership of the human species and a willingness on our part to see them as such.

Disagreement

The argument as a whole is offered in the spirit of there being more than one point of view that might have a rational claim on anyone who thinks about these things. Of course, we cannot simply say, ‘here is one way of valuing profoundly disabled people, and there is another’, and leave it at that. Where one view contradicts another at least one must be false; we should look out for contradictory and inconsistent views and explain where they go wrong. Nor is it only logic that is to be respected: beliefs about the value of human beings with PMLD are related to what we know about how they function and what they are capable of, and they are related, therefore, to the evidence of neuroscience and cognitive psychology. Any argument should be consistent with the best available scientific evidence, and where it is not it must be rejected. Logic and science, therefore, set limits on what we can rationally say about the value of profoundly disabled people.

This leaves scope for rational disagreement. The evidence of science is not always uncontroversial; it evolves and it does not of itself determine conclusions about the value of human beings. We might agree on the neuroscientific diagnosis of some profound cognitive impairment and rationally take up opposing points of view as to what this implies for a decision whether to withhold life-saving treatment or to accept the cognitively impaired person as someone who has the right to vote. Parfit maintains that if we were in possession of all the relevant non-normative facts, and made use of the same or very similar normative concepts, and understood and reflected on the relevant arguments, the scope for disagreement might be a lot less than is suggested here (Parfit 2011b: 543–565). Less, perhaps, but still, I maintain, unnervingly large. There are deep substantive disagreements among philosophers who write about the value of profoundly disabled people: whether, for example, the source of value lies in an individual, her relationships or her species membership; if in an individual, whether this is in virtue of her intrinsic psychological capacities, or what we choose to bestow upon her, or an ‘attitude that we have towards her soul’ (cf Wittgenstein 1963: II, §iv: 178).

Methodological differences are similarly stark, according to the emphasis placed upon science, argument, cultural practice, authoritative witness and the insights of imaginative literature. These differences are so large that one often has the impression of philosophers talking past each other, struggling to understand why their opponents could possibly believe what they say they believe. At some points, one meets with barely disguised incredulity (see, for example, exchanges recorded in Kittay 2010). Mutual incomprehension is hardly unique to discussion of profound impairment, but it is telling that discussion of this subject should reveal deep differences in respect of fundamental premises and the materials it is appropriate to make use of in the service of philosophical enquiry.

Some philosophers who reject moral individualism are well aware of the facts about profound impairment; they understand that some people cannot vocalise, pursue a line of argument or act autonomously. But they do not consider that these facts, alone, determine how we should value a profoundly disabled person; they think that other facts matter more, or that these other facts are the only facts that matter – the fact of being human, for example – or they think that it is not facts of this kind that determine how we should consider other human beings, but elements of our social practices, or the revelatory power of love or a disposition to identify with members of our own kind. Should it turn out that this represents a fundamental and irreconcilable difference between philosophers of various persuasions that leaves the question which, if any, of the competing approaches has most to be said for it, and whether there is any definitive answer to that. If, moreover, there is no commonly accepted method for determining rationally and conclusively the truth of competing claims, then these claims come without a warrant that compels rational assent. This predicament, much discussed, is a subject for meta-ethics; non-cognitivists and expressivists would have a lot to say about these last suggestions, and I make them, not as a prelude to a longer discussion, but to express some unease about how much an exercise of the kind undertaken here can achieve.

There is one further aspect of disagreement I want to comment on. The features of some of the best work discussed here are clarity and explicitness: no mysteries and elusive evocations. (The most impressive example I know of is McMahan’s Ethics of Killing (2002).) And there is a determination to provide arguments that can be called upon to help us answer the sort of decisions that face neuro-disability specialists and policy makers every day: should we withhold life-saving treatment from a child who has a life-limiting condition and who is in constant, severe pain? Should we abort a foetus who is diagnosed with lissencephaly? What portion of the education budget should be allocated to children with profound disabilities as compared with children with moderate disabilities? The arguments of such writers as McMahan, Singer and Nussbaum, though not always leading to even broadly similar conclusions, are designed to explicate and answer such problems as these; the arguments of Gaita, Diamond and Mulhall, variously preoccupied with questions of linguistic, social and cultural practice, are less well fitted to this purpose, and that is a point in favour of the former group.

However, not everything that we might want to say about the value of profoundly disabled people lends itself to a precise specification, or to distinctions that conduce to decision-making. Aristotle recommended that we remain satisfied with the degree of precision that the subject permits and not seek exactness where only approximation is possible. Whilst this can serve as a pretext for evasiveness and obfuscation there are some subjects – dignity, love, preciousness – about which some of what it is important to say is ineliminably imprecise. Certainly, we might ask about the rights associated with human dignity, and how these rights apply to profoundly disabled people as compared with anyone else, with a view to reaching determinate conclusions that assist with decisions of law and policy. But the characterisation of dignity itself can be illuminated by arresting testimony and authoritative witness, whose claim on our attention is not wholly dependent on its being rendered in the form of propositions and argument. This, of course, is exactly the kind of suggestion that is looked on askance by those who insist on seeing every consideration out in the open, as it were. I have some sympathy with this insistence. Of any normative appeal to experience or testimony there is a question as to what the world must be like in order that any such normative possibility should obtain, what it is about any such appeal that it should reveal this possibility, and why we should accept the appeal as it is put to us; these are matters about which anyone engaged in this exercise should have plenty that is transparent to say. At the same time, there are alternative conceptions of how reasons function to support a normative claim. The crux of at least one disagreement here is how much we should be looking to reasons that are external to the appeal, reasons that serve as considerations for any rational agent who considers the situation, and how far they are internal to the appeal, in the sense that their force and intelligibility presuppose a community of people who share in a common life, or who possess a basic disposition to identify with, or show solidarity with, their fellow human beings. I am interested in reasons of the first sort, certainly, but also in reasons of the second sort.

What, then, is the nature of the discussion to follow? My methodological sympathies lie with those for whom the demands of analytic philosophy are pre-eminent – clarity, explicitness and so forth; my substantive sympathies lie with those who offer an unqualified affirmation of the value of profoundly disabled people, and whose accounts include appeals to personal experience and testimony, and to the significance of human relationships and identifying with others of our own kind. Whether this motley assortment of inclinations makes for a coherent orientation is something that readers must judge for themselves.

Profound and multiple learning difficulties and disabilities⁵

Someone may be profoundly disabled owing to a genetic endowment or brain injury, or she may be considered as profoundly disabled not only in virtue of that, but also in virtue of how she is perceived and treated by others. The ‘social model’ of disability draws attention to the extent to which disability is related to the perceptions, attitudes and assumptions embedded in the culture of a society. On this model, the term ‘disability’ is reserved for incapacity whose source lies in societal practices, whilst ‘impairment’ is the term preferred for incapacities rooted in biology and genetics. There is not space to discuss the social model of disability here, although I aim to show sensitivity to its many insights. I should explain the decision to opt for ‘profound and multiple learning difficulties and disabilities’ as the expression most commonly used here. The expression has kept its place since it remains in common parlance in England and in the domestic policy literature on disability. This may prove temporary, since the terms ‘impairment’ and ‘disability’ mark a real and important distinction, and there is a case for preferring alternative phrases, also used in England, Australasia and the United States, such as ‘intellectual disabilities’ and ‘cognitive impairments’. Nevertheless, I ask readers who prefer alternative phrases to allow this concession to domestic nomenclature. At the very least, I aim, throughout, not to make any unwarranted assumptions about the scope, nature or source of any disability referred to.

Conceptions of PMLD remain a source of controversy: there is some dispute about the terms, categories and methods of measurement used to identify the forms and degrees of profound impairment, and the various dimensions to be taken account of – behavioural, physiological, emotional and so on (Ouvry 1987: 12–16; Cleland 1979: 1–4). There is, moreover, an ongoing debate about the implied distinction between ‘severe’ and ‘profound’ dis...

Table of contents

• Cover
• Title
• Copyright
• Dedication
• Contents
• Acknowledgements
• 1 Introduction
• 2 Our fellow creatures
• 3 Sharing in a common life
• 4 Respect and identification
• 5 Human dignity
• 6 Capability, functioning and freedom
• 7 Dependency
• 8 Citizenship: the right to vote
• 9 Our fellow creatures revisited
• 10 Afterword
• Appendix
• Bibliography
• Index