Arguing about Disability

Philosophical Perspectives

Kristjana Kristiansen, Simo Vehmas, Tom Shakespeare, Kristjana Kristiansen, Simo Vehmas, Tom Shakespeare

• Publisher: Routledge
• Year: 2008
• Print ISBN: 9780415588539
• eBook ISBN: 9781134049738
• Edition: 1
• Topic: Medicine
• Subtopic: Health Care Delivery

Disability is a thorny and muddled concept - especially in the field of disability studies - and social accounts contest with more traditional biologically based approaches in highly politicized debates. Sustained theoretical scrutiny has sometimes been lost amongst the controversy and philosophical issues have often been overlooked in favour of the sociological. Arguing about Disability fills that gap by offering analysis and debate concerning the moral nature of institutions, policy and practice, and their significance for disabled people and society.

This pioneering collection is divided into three sections covering definitions and theories of disability; disabled people in society and applied ethics. Each contributor – drawn from a wide range of academic backgrounds including disability studies, sociology, psychology, education, philosophy, law and health science – uses a philosophical framework to explore a central issue in disability studies. The issues discussed include personhood, disability as a phenomenon, social justice, discrimination and inclusion.

Providing an overview of the intersection of disability studies and philosophical ethics, Arguing about Disability is a truly interdisciplinary undertaking. It will be invaluable for all academics and students with an interest in disability studies or applied ethics, as well as disability activists.

Part I
Metaphysics

1 Social justice and disability

Competing interpretations of the medical and social models¹

Steven R.Smith

Introduction

The medical and social models of disability, whilst establishing important parameters for understanding competing interpretations of disability are now probably more accurately presented as archetypes of various discourses concerning disability, allowing for a range of interpretations between these two extremes (Shakespeare 2006). It is in this light that my chapter revisits how these models can be variously interpreted in an effort to clarify the different type of claims that can be made by the Disability Rights Movement (DRM).

Briefly put, the medical model has been commonly regarded by the DRM as an inaccurate interpretation of disability forming the basis of oppressive and exploitative relationships between non-disabled and disabled people. The argument is that focusing on individual medical conditions as the causes of disability, the medical model, first, incorrectly defines disability as a fixed condition related to the severity of a medical impairment. Second, it also incorrectly assumes that it is this medical condition, often defined as ‘handicap’, which inevitably causes ‘dependency’ between disabled and non-disabled people. So, according to Colin Barnes, the medical model links the term ‘handicapped’ with ‘individually based functional limitations’ which in turn falsely implies that: ‘The impairment is permanent and that [the handicapped] will almost certainly remain dependent throughout their lives’ (Barnes 1991: 2).

For the DRM, the ‘social model’ offers an alternative paradigm for understanding disability by identifying causes of disability within social and political domains. Therefore, the experience of disability is not reduced to a fixed medical state relating to the severity of a particular medical impairment, but rather is an experience that is dependent upon how society is politically and socially organised and structured in relation to particular medical conditions. From this vantage point, the focus for the DRM is on the ‘politics of disablement’ where citizenship, inclusion and the problems of accessibility and discriminatory barriers to participation, are seen as central to the struggle of ‘being disabled’ (Oliver 1990). That is, rather than focusing on individually based functional limitations which require treatment, adjustment or ‘cure’ as defined by the medical model.

These models of disability though, can still be variously interpreted. Any model, after all, whilst it might provide useful generalisations concerning the character of the phenomena being examined, is relatively abstract and still requires further more substantive interpretation if it is to be relevant to specific policy and practice. I will begin by outlining two interpretations of the medical model, with one interpretation probably lying in between the medical and social models, plus two interpretations of the social model. My main argument being that (whilst these might not be exhaustive) each interpretation has distinct implications for the way disabled people are viewed and treated.

Reinterpretations of the medical model

One objection by the DRM to the medical model is that it is based on what is seen as an essentialist notion of disability (e.g., see Swain et al. 2003: 98–102). This associates being disabled with fixed and essential characteristics (i.e. characteristics necessarily associated with being disabled), seen via the perspective of non-disabled people and experts, that inevitably preludes a life of personal loss or tragedy. I will call this interpretation of the medical model the ‘full essentialist individual deficiency’ interpretation, or FEID. The main point is that policies and practices based on FEID render disabled people as passive and powerless targets of intervention through non-disabled expertise. For the DRM, this reduces the person and his or her experience to an essentially ‘abnormal’ and ‘lesser-than’ medical condition. In respect to policy and practice, the FEID is reflected in legislation throughout the industrialised world explicitly defining people with impairments as medically ‘deficient’, ‘sub-normal’ and the like. Consequently, policies of segregation and medical treatment have been legitimated where disabled people, being seen as essentially deficient, were (and are) categorised as unable to function ‘normally’ and therefore requiring separated and ‘special’ care (see Hevey 1992). At its most extreme, FEID is found in the eugenics movement and fascist ideology of the early twentieth century, where the essential deficiencies of disabled people are seen as a threat to the ‘pure race’. This led not only to impaired people being segregated from the essentially normal and ideal but also resulted in the recommendation and practice of genetic eradication and even the systematic murder of people with impairments.

However, the FEID has been, on the face of it at least, rejected by most contemporary mainstream policy-makers and replaced by more social and integrated interpretations of impairment. For example, disability in part could be seen as a consequence of deficient ‘bodily structure’ or function (reflecting FEID) but that these in turn are deficiencies defined in relation to complex functionings operating within a social context (reflecting more social interpretations of impairment). Assuming an interface between medical and social functionings, this leads to an interpretation of disability that moves away from the FEID recognising that an impaired person might be able to participate in mainstream society, albeit as a matter of degree. So, an impaired person might be defined as deficient because they cannot walk, but then the complex social activity of mobility can accommodate for this deficiency if the environment is made accessible to wheelchair-users. It is this latter understanding of impairment I will call the ‘part-essentialist individual deficiency interpretation’, or PEID. Briefly put, this assumes an impaired person is able to participate at least to some extent in social activities—that is, despite their individual medical deficiencies, and as long as the social and physical environment is changed to accommodate them. In other words, PEID still assumes that essential differences between ‘the disabled’ and ‘non-disabled’ exist, but that these differences do not mean that a disabled person cannot ‘function normally’ at least in certain social contexts.

The PEID, which combines or synthesises elements of the medical and social model of disability, can be found in various policies and practices and is used implicitly by the World Health Organisation (WHO) in its Second International Classification of Functioning, Disability and Health (WHO 2001). This ICF classification revises WHO’s earlier definition of impairment and disability, in response to severe criticisms of the first classification by the Disabled People’s International (DPI). The earlier classification was eventually published as an official WHO document in 1980 but was criticised by the DPI for focusing almost exclusively on the problems of having certain medical conditions, rather than on the problems of the social environment. The second ICF classification addresses some of these criticisms, recognising that deficient bodily function can be accommodated for socially, allowing the active participation of people with impairments.

However, this compromise between the two models is still seen as inadequate by many within the DRM. So, although the second more socially minded interpretation has moved away from the FEID understanding of individual deficiency (in that the social environment is seen in part as the problem), it still explicitly relies on a medicalised understanding of disability and so cannot avoid an essentialist interpretation of normality. Therefore, disabled people are still defined as ‘problematic’ because they are unable to conform to standards of normality which in turn are standards that are associated with what is seen as ‘ideal’ or ‘best’. This understanding of ‘the problem’ legitimates policy where the non-disabled professional, as guardian of this normalisation process, is assumed to be the expert and therefore knows best how to facilitate better social functioning. In other words, using my terminology for these different interpretations, there are still strong echoes of the FEID interpretation found within PEID and these are reflected in contemporary policy and practice. Consequently, disabled people are treated by non-disabled professionals as if the former’s experience is essentially ‘lesser-than’ and even ‘tragic’, which then legitimates the latter exercising considerable power or control over the disabled client or user. For example, according to Jenny Morris:

Someone who is blind is thus viewed as experiencing a ‘personal tragedy’ and it is the role of the professional to mitigate the difficulties caused by not being able to see…[Moreover] the medical and ‘personal tragedy’ models of disability and the attitudes which go with them are a very important part of the powerlessness experienced by disabled people in their relationship with those professions whose role is so important to the quality and nature of our daily lives.

(Morris 1991: 180)

Therefore, mainstream policies are recommended using the PEID interpretation of impairment that either involves non-disabled experts changing the individual deficient/tragic condition through medical intervention and/or providing rehabilitation programmes for individual and social adjustment to that condition. The point for the DRM is that these policies (despite their social leanings) usually serve to reinforce the exploitation and discrimination of and against disabled people—even if these policies involve considerable resources being redistributed from the non-disabled to meet the supposed ‘special needs’ of disabled people (Oliver 1996: 62–77). So, intervention strategies based on the meeting of needs (defined by non-disabled experts), whilst justified on the grounds of providing care and enhancing participation, in fact function as mechanisms of social control and serve to undermine the autonomy and decision-making power of disabled people. According to Michael Oliver, recently implemented community care policy within the UK has made:

[N]eeds led assessment the linchpin of service delivery…however, above all else assessment of need is an exercise of power, as even the language we use to talk about the exercise shows… The professional assesses the need of the client or ‘user’, as they have now come to be called…. [Yet] various studies show that professionals have distorted or defined their needs … The new reforms do not change this balance of power at all.

Reinterpretations of the social model

What then of the different interpretations of the social model? Much of the DRM implicitly promotes one understanding of the social model that I will term the ‘politics of disablement’² interpretation, or POD. Instead of medical or rehabilitation polices being recommended via the FEID or PEID interpretations, attention is directed by the POD interpretation toward changing the social and political environment. In other words, this interpretation offers a structural, as distinct from an individual account of disability, in effect bracketing the personal experience of disability, other than what an impaired person might experience in relation to the social and political environment. It is via this POD interpretation that the DRM makes a clear distinction between ‘impairment’ and ‘disability’. So, impairment is associated with a particular medical condition, which may (or may not) lead to a disability, with disability being associated with various social and political restrictions often (but not always) imposed upon people with impairments. For example, according to the Union of the Physically Impaired Against Segregation (UPIAS):

Impairment is the functional limitation within the individual caused by physical, mental or sensory impairment.

Disability is the loss or limitation of opportunities to take part in the normal life of the community on an equal level with others due to physical and social barriers.

(UPIAS 1976; see also Bickenbach 1999: 1173–86)

Following from this distinction, disability is therefore seen by many within the DRM as a thorough-going social and political concept and so should have no medical or individualised import whatsoever. So, according to Liachowitz:

Disability exemplifies a continuous relationship between physically impaired individuals and their social environments, so that they are disabled at some times and under some conditions, but are able to function as ordinary citizens at other times and other conditions.

(Liachowitz 1988: 2)

However, my argument is that the POD interpretation, although in many ways radically challenging to the two medical model interpretations, still adheres to the same essentialist myth of ‘ordinary’ or ‘normal living’, because it too relies on fixed assumptions concerning the ‘normal’ and ‘abnormal’ as related to ‘ideal’ and ‘non-ideal’ states of being. In short, the value of functionality as related to notions of ordinary citizenship is abstractly reified by the POD interpretation as a fixed ideal. That is, an ideal based on a normalised shared social goal for all individuals, including people with impairments. Of course, understandings of normalisation are conceptualised differently by the POD (compared with the medicalised interpretations above) as it refers solely to the social rather than medical origins of deficiency. However, my principal point is that all these interpretations define ‘deficiency’ as a ‘social problem’ with the ideal condition of ordinary citizenship being promoted as the main aim of each. So, the POD interpretation often portrays disabled people as looking forward to, and struggling for, a future where they can participate in the same ideal and normal state as ‘the non-disabled’ already are, supposedly, enjoying. For example, the ideal of ‘independent living’ is often promoted within the DRM as a goal for disabled people, intended to reflect characteristics of normal or ordinary citizenship. However, having this goal ignores how, in the process, rigid demarcations are made between ‘normality’ and ‘abnormality’ and between ‘independence’ and ‘dependence’ that are themselves essentialist. So, these demarcations assume falsely that (a) it is necessarily the case that all non-disabled people are independent, and (b) the condition of independence is, in any event, a desirable ‘state of being’ (see also my arguments in Smith 2001b:579–98). Consequently, although according to the POD interpretation a disabled person’s inability to achieve the goal of independence is related to social causes, it is still axiomatically assumed it is a deficiency that this goal remains unachieved.

To summarise, with all the interpretations of disability examined so far, the problem of deficiency is fixed in relation to essential facts (whether social, medical or a mixture of both) and that these ‘facts’ cause the problem. Moreover, it is a problem that is fixable through strategies that promote ordinary citizenship, whether via social and/or medical adjustment (as with PEID and POD), or, as with the FEID interpretation, with the segregation or eradication of people with impairments.

There is though at least one other interpretation of the social model that I believe complicates any exegesis of the DRM’s political demands. In this interpretation, it is not only that disability is socially caused by inaccessible and discriminatory social environments but also that disability is ‘socially constructed’. That is, the definition and social meaning given to individual deficiency or dysfunction (and their opposites ‘talent’ and ‘capability’) can also be conceived as related to particular social and political processes. Therefore, disabled people are discriminated against via two types of social and political processes: first, and reflecting the POD interpretation above, by social and political structural environments that exclude individuals with certain medical conditions; and second, by social and political discourses that defines what are in the first place talents and handicaps. It is this second type of social process that I will now explore, leading to what I call the ‘social construction of disablement’ interpretation of the social model, or SCOD.

With the SCOD interpretation it can be seen that the DRM focuses not only on issues of inaccessibility and social inequality, but also on questions concerning the negative social construction of disabled people’s individual and group identity. For example, the medicalised assumption that the experience of impairment is a tragic personal loss is wholeheartedly rejected by the DRM, partly for the structural reasons explored above regarding the unequal power relationships between nondisabled professionals and disabled clients and users, but also because a disabled person’s identity as a disabled person is undermined as a result. So, according to Swain et al., ‘for many disabled people, the tragedy view of disability is in itself disabling. I...

Table of contents

• Cover Page
• Title Page
• Copyright Page
• Notes on contributors
• Introduction: the unavoidable alliance of disability studies and philosophy
• PART I Metaphysics
• PART II Political philosophy
• PART III Ethics