Disability with Dignity

Justice, Human Rights and Equal Status

Linda Barclay

• Publisher: Routledge
• Year: 2018
• Print ISBN: 9781138498068
• eBook ISBN: 9781351017091
• Edition: 1
• Topic: Philosophy
• Subtopic: Ethics & Moral Philosophy

Philosophical interest in disability is rapidly expanding. Philosophers are beginning to grasp the complexity of disability—as a category, with respect to well-being and as a marker of identity. However, the philosophical literature on justice and human rights has often been limited in scope and somewhat abstract. Not enough sustained attention has been paid to the concrete claims made by people with disabilities, concerning their human rights, their legal entitlements and their access to important goods, services and resources.

This book discusses how effectively philosophical approaches to distributive justice and human rights can support these concrete claims. It argues that these approaches often fail to lend clear support to common disability demands, revealing both the limitations of existing philosophical theories and the inflated nature of some of these demands. Moving beyond entitlements, the author also develops a unique conception of dignity, which she argues illuminates the specific indignities experienced by people with disabilities in the allocation of goods, in the common experience of discrimination and in a wide range of interpersonal interactions.

Disability with Dignity offers an accessible and extended philosophical discussion of disability, justice and human rights. It provides a comprehensive assessment of the benefits and pitfalls of theories of human rights and justice for advancing justice for the disabled. It brings the moral importance of dignity to the centre, arguing that justice must be pursued in a way that preserves and promotes the dignity of people with disabilities.

1 What Is Disability?

What is disability? To whom do we refer when we talk about the disabled, or people with disabilities?

Anyone familiar with the last 30 years or so of disability scholarship will know that straightforward answers to these questions are surprisingly elusive, despite the voluminous amount of discussion that has been devoted to them. So far, most of the numerous answers proposed are very controversial.

I shall argue in the next chapter that settling on the right conception or definition of disability is not quite as important as many disability scholars have assumed it to be. Nevertheless, meaningful discussion about injustice, discrimination and human rights in the field of disability all presuppose that we know, at least roughly, who we are talking about, and why we are talking about them. Most people readily apply the term “disabled” to those who are blind, deaf, paraplegic or cognitively impaired (for example). What do such individuals have in common that makes them all “disabled”?

My answer to this question is ultimately guided by one key consideration. We need a conception of disability that can be used for a number of purposes, including debating and promoting justice. This means that it must not be so far removed from the everyday notion that it ultimately fails to be practically useful in guiding discussion. I shall argue that most existing conceptions of disability do not pass this test; indeed, their proponents often implicitly abandon them when they turn to discuss matters of justice, instead reverting back to confused and controversial conceptions of disability that they argued should be jettisoned. We need not only a plausible but also useful conception of disability.

The International Classification of Functioning, Disability and Health

Guy Kahane and Julian Savulescu suggest that the “everyday concept” of disability incorporates both a descriptive and an evaluative component (2009). Descriptively, the disabled are people with certain physical or cognitive features that lead to a loss of some function or ability that most people possess. Evaluatively, such people are said to suffer from disability; that to lack some function or ability that most people possess is a misfortune.

Various models of disability developed by the World Health Organisation incorporate both the descriptive and evaluative components of the everyday concept. The International Classification of Impairments, Disabilities and Handicaps (ICIDH) and its successor classifications, the ICIDH-2 and the International Classification of Functioning, Disability and Health (ICF), each emphasise bodily impairments as well as limitations on an individual’s capacity to perform certain tasks and activities. However, over the course of the development of the three different classifications, emphasis was increasingly placed on the fact that the “lived experience of health” is an outcome of a complex interaction between bodily impairments, activity limitations and the physical, social and cultural environment in which the person is situated. “Disability” is an “umbrella” term for impairments, activity limitations and participation restrictions, all of which individually are characterised as diminutions in functioning. The ICF is thus “a tool for measuring functioning in society” (WHO 2001).

While there is some lack of clarity over the application of its various terms in specific cases, the ICF incorporates both health conditions and personal and social factors to explain disability and functioning. “Impairment” refers to “problems” in body function or structure, such as significant deviation or loss, where body functions refer to physiological functions of body systems, including psychological functions, and body structure refers to anatomical parts such as organs and limbs. “Activity limitations” are “difficulties” the person may have in executing certain tasks or actions (grasping, walking, speaking) and “participation restrictions” are “problems” an individual may experience in involvement in life situations (working, parenting). For example, the loss of the legs is an impairment, the inability to walk is an activity limitation and exclusion from employment markets is a participation restriction.¹

Importantly, and in contrast to the ICIDH and ICIDH-2, the ICF refrains from positing any causal relations between impairments, activity limitations and participation restrictions: “what causal links there may be must be independently determined by research and good evidence” (Bickenbach 2012: 57). Unlike the ICIDH, no assumptions are made that the presence of a biological condition necessarily causes any limitation in activity. A person with a severed spinal cord may be fully mobile with a wheelchair just as a person whose diabetes is controlled by medication may function fully with respect to all relevant activities. Certainly there is no assumption that any biomedical condition, even one associated with some activity limitation, causes any participation restrictions. A non-discriminatory and appropriately accommodating social, legal and cultural environment may facilitate complete participation. If people with impairments do suffer activity limitations or participation restrictions, the causes may be entirely social, such as failure to distribute appropriate technologies and health care resources, or because of unchecked discrimination and prejudice.

In this regard, the ICF classification coheres with prominent philosophical positions on disability. David Wasserman has argued that recognising that functional loss arises from an interaction between biological and social factors means that we should be very sceptical of any attempt to single out one of these factors as the cause of disability (2001: 226). What we fix upon as the cause will be subjective and context-dependent. When people claim that a person’s impairments are responsible for her disadvantage, they are often presupposing some kind of state of nature baseline in which no one enjoys the advantages of technology or social cooperation. Such a baseline is value-laden and need not be adopted in our context of extensive technology and social cooperation. Similarly, the claim that social arrangements are always the cause of activity limitations and participation restrictions assumes all manner of things about the possible nature of, and entitlement to, particular social environments.

I will return to these complex issues in the following chapters. For now, what we learn from Wasserman is that identifying the correct causal links between impairment and functional loss is not just a matter of “research and good evidence”, as Bickenbach claims (2012: 57): it is also a matter of normative analysis. As I will demonstrate, it is a strength of the ICF’s “interactionist” account of disability (Wasserman 2001: 224) that it avoids the dubious attempt to identify a single cause of functional disadvantage by definitional fiat, a core problem of some other definitions or models of disability.

In sum, the ICF is based on a “biopsychosocial model of disability”, one that recognises that disability is always an interaction between features of the person and features of the environment in which she lives. Some aspects of disability might be almost entirely “internal” to the person, and others almost entirely “external”, but any such determination can only be made on the basis of observation, evidence and normative analysis.

A conception of disability based on the ICF classification is as follows:

Disability is an impairment associated with some loss of functioning either with respect to the ability to execute certain tasks or to participate fully in some aspect of social life.

One significant problem with this proposal, and the ICF classification on which it is based, is the restricted focus on functioning. Even if “functioning” is very broadly conceived, there are likely other aspects to disability that it doesn’t capture. For example, some impairments are associated with significant pain and discomfort. Pain and discomfort can impair function, of course, but they are important disadvantages even if they don’t. Similarly, a person’s level of wealth and income is surely in some cases relevant for questions of justice: many disabled people are much poorer than people without disabilities. However, an exclusive focus on “participation restrictions” will fail to capture this aspect of justice, even though of course poverty can itself cause significant participation restrictions, as well as be an effect of such restrictions. All of these considerations will be discussed in more detail in subsequent chapters. For now, I will modify the proposal as follows:

Disability is an impairment associated with some disadvantage, including, but not limited to, loss of functioning either with respect to the ability to execute certain tasks or to participate fully in some aspect of social life.

Each of these key terms requires further clarification: “impairment” (that is, “problems with body function and structure”), “executing a task”, “participating fully” and, certainly, “disadvantage” are all vague. So is the statement that impairments are “associated” with activity limitation, participation restriction or other disadvantage. It follows that classifying someone as disabled on the ICF conception will often be controversial.

This is exactly how it should be. The phenomenon we are trying to capture is extremely diverse. More precise definitions will be less likely to capture the appropriate range of people that we should have in focus when we discuss issues of justice for people with disabilities. As I will show in the next two sections, my conception of disability avoids a common flaw with other conceptions, namely that they are either under- or over-inclusive. This failure of appropriate scope is due to one of two key ways in which other conceptions of disability deviate from my ICF account. Firstly, some impose a more restricted causal account of the “association” between impairments and disadvantage than does my conception. Secondly, some other accounts of disability dispute the classification of various bodily and psychological traits into the category of “impaired”. From the point of view of justice, of ensuring that our discussions include those who have most at stake, these are serious flaws.

What Causes Disability?

The social model of disability is firmly entrenched within disability scholarship and activism. In one of the first statements of the view, the Union of the Physically Impaired Against Segregation (UPIAS) claimed that disability is distinct from impairment and is defined as

the disadvantage or restriction of activity caused by a contemporary social organisation which takes no or little account of people who have physical impairments and thus excludes them from participation in the mainstream of social activities … disability is something imposed on top of our impairments by the way we are unnecessarily isolated and excluded from full participation in society.

(Oliver 1996: 22)

UPIAS provides little clarification on what it means by impairment. One of UPIAS’ members suggested that it means “lacking part of or all of a limb or having a defective limb, organism or mechanism of the body” (Oliver 1990). There is a reason why the concept of impairment is neglected. Early proponents of the social model were focused on dislodging the assumption that physical impairments cause exclusion from participation in society. The belief that some people are impaired was not itself the initial target because that belief was not considered the primary site of disability oppression. As we shall see in the next section, this rather relaxed view about the importance of the category of impairment has subsequently been challenged by numerous disability scholars.

Many elaborations of the social model have been developed over the last 30 years. What unites all of them is the shared belief that all, or at least most, disadvantages connected to impairment – including activity limitations (such as communicating, being mobile) or participating fully in society (working, voting, parenting) – are caused by social injustice. There are many differences as to how the nature of the injustice is characterised: some emphasise that people with impairments experience discrimination similar to that experienced by women or racial and ethnic minorities (Oliver 1990; Hahn 1997; Silvers 1998b), whereas others highlight the injustice of an incommodious social environment that fails to respect human variation (Scotch and Schriner 1997).

The social model of disability is not incompatible with my ICF-based conception of disability, although many disability scholars would suggest it is. Some disability activists have argued that the ICF presupposes the so-called “medical model of disability”, one that assumes that any functional loss or disadvantage is caused by impairment and that therefore, the primary social response should be medical correction (where possible) (Kayess and French 2008). I’ve argued that this is incorrect: the ICF is consistent with the view that discrimination and other forms of injustice cause activity limitations or participation restrictions.

The difference between the ICF and the social model is that the social model postulates a single causal “association” between impairments and loss of functioning, namely, that it is only social injustice that causes people with impairments to experience participation restrictions (and other disadvantages). Or, as the ICF puts it, according to the social model, disability is “external” to the person. The social model denies that impairments – features “internal” to the person – directly cause loss of functioning or other disadvantage. The ICF makes no such claims.

The social model of disability has been extensively critiqued precisely because it posits a restricted causal account of the connection between impairment and disadvantage. Its critics have claimed that the model excludes the lived experience of the body and its significance (Morris 1991; Wendell 1996) and ignores the fact that impairments themselves can be a source of pain, limitation and other disadvantage, even in just societies (Terzi 2004; Shakespeare 2006). It is a weakness of the model that it asserts a one-dimensional relationship between impairment and disadvantage, even though it is true that many of the disadvantages associated with impairment are caused by social injustice.

A related problem for the social model is that it is under-inclusive, with the effect that it inappropriately excludes many people from discussions about justice. People with impairments whose pain, fatigue or functional loss is not plausibly attributed to social injustice do not count as disabled on this model: they are therefore not our focus or concern in debates about justice for the disabled. I suggested earlier that a key criterion of any acceptable conception of disability, especially in the context of claims about justice, is that it be appropriately inclusive and thus practically useful.

Some proponents of the social model have responded to their critics by suggesting that the concept of disability is simply distinct from the concept of impairment and whatever disadvantages might directly attach to it (Beaudry 2016). The nature of impairment, including the question of whether it causes loss of function and other disadvantage even in the absence of social injustice, is something in need of its own independent analysis. The social model does not make a mistake in defining disability in the way it does: it intentionally reserves use of the word for the effects of social injustice (Wasserman et al. 2016).

This response is hardly satisfactory for a proponent of the social model of disability. The primary aspiration of the social model is to refute the widespread assumption that impairments directly cause disadvantage. Hence, it is argued, “disability” refers to the disadvantage imposed on people with impairments. Claiming that impairments are entirely distinct phenomena in need of their own analysis merely shifts the focus, and the potential prejudice, to that concept or category instead. “Impairment” then becomes the concept of biological limitations or “defects” which directly cause their bearers to suffer. There is still some achievement with this set of definitional manoeuvres: we have a new understanding of “disability” that forces us to acknowledge injustice against people with impairments. But this is consistent with continuing to assume that people with impairments also suffer directly because of their impairments, suffering that cannot (by definition) be explained in terms of social injustice. Indeed, there is little to prevent us from assuming that the majority of such suffering is not disability. This result is not consistent with the aspirations motivating the development and promotion of the social model of disability.

In sum, there are two possible conclusions to be reached about the social model of disability. First, that it is attempting to rule out by definitional fiat the possibility that any impairment can cause or contribute directly to disadvantage, which is implausible. We cannot resolve controversial empirical and normative issues by definitional fiat. Alternatively, we can take the model to be proposing that when impairment does directly cause disadvantage, this is a distinct phenomenon to “disability”. This second result is conceptually very messy, and given that it fails to promote the aims of the social model, it does not represent any advantage over my ICF-based conception.

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Table of contents

• Cover
• Title
• Copyright
• Contents
• Acknowledgements
• Introduction
• 1 What Is Disability?
• 2 Moving on from Definitional Debates
• 3 A Just Distribution of Resources
• 4 A Just Distribution of Capabilities
• 5 The Distributive Potential of Human Rights
• 6 Capabilities Justice as Human Rights?
• 7 Dignity and the Right to Vote
• 8 Dignity, Day to Day
• Index