Discourses of disability and clinical ethics support

The medical model discourse

Despite its name, the medical model of disability is not a discourse dependent on a particular account of medical knowledge or practice, and it is perfectly possible to work within a medical environment and not ascribe to the medical model of disability. Indeed, the medical model is often (and arguably more appropriately) termed the individual model. The phrase ‘medical model’ is perhaps best understood as a label attached to the discourse by its critics, built upon a parody of medicine as a dispassionate process of defining and delineating normal bodily functioning and abnormal bodily functioning, such that those with abnormal functioning can be treated as required. Few doctors, nurses, or health-care assistants would, I am sure, recognize this as an accurate depiction of the complexities of their work. Yet, in the broad sense that the core purpose of medicine is to diagnose and cure disease, there is an important link between medical practice and the way in which this discourse anchors a definition of disability. From the medical model perspective, disability is equivalent to physical or psychological impairment, understood as deviation from the normal range of human beings' functioning. When we reflect on how disability is deployed within medicine, we can see that this account of disability has gained significant currency. Consider, for example, what it means to have an intellectual disability. One of the core diagnostic criteria for intellectual disability requires those to be defined as intellectually disabled to have an IQ of below 70 ^1,2 equivalent to two or more standard deviations below the population mean.

If, from the perspective of the medical model, having a disability is nothing more than a description of a person's functioning relative to some statistical population norm, what of the evaluative component of this way of thinking about disability? The move here is simply to write the value judgement into the description of disability as statistical deviation from normal functioning. Thus, the argument goes that it is intrinsically bad to have a disability because functioning below the normal range, i.e. to be subnormal, by reason of physical or psychological impairment, makes the life of a person with disability go less well in reference to what is good for her, namely the quality of her life. For those ascribing to the medical model discourse, having a disability is, therefore, to be both described, and to be judged, as being in a disadvantageous state: ³ a perceived personal tragedy of individual pathology to which those who are not so disadvantaged are obliged to respond. ⁴

If we accept the validity of this argument – and compelling counter-arguments have been put forward for why we should not – then the evaluative conclusion that follows is clear. Our moral obligation is to assist a person with a disability by ‘normalizing’ her. Or, to put it another way, we should bring that person back into the statistical fold, doing good by removing the intrinsic badness associated with the disadvantage of being so impaired. The medical model discourse of disability is, therefore, orientated entirely towards interventions at the level of the individual, although it is accurate to note that the morally right course of action in the face of disability would take different forms, depending on our capacity for normalization. Where it is possible to cure a person's disability, we ought to do so. Where a cure is not available, we might conclude that we should stop that person from becoming a statistical outlier in the first place, possibly using reproductive technologies to prevent her from coming into existence. Where we are faced with a person with a disability who cannot be cured, we ought to do what we can to enable that person to live a ‘normal’ life such that the badness intrinsic to being statistically abnormal is mitigated to the greatest extent.

What this means in practice depends partly on the nature of the person's abnormal functioning. For example, we would care for, and make available different normalizing opportunities, for a person with an IQ of 69 than we would for a person with an IQ of 39, or for a person with depression and a person with schizophrenia. The practical implications also depend partly on our account of normalization. Traditionally, the normalization of people with disabilities has been predicated upon (largely medicalized) processes of segregation, where those with disabilities have access to special services, demarcated from mainstream society in institutional settings such as asylums, long-stay hospitals or special schools. Here, it is claimed, they will be able to receive the extra kinds of support that can assist them in leading statistically normal lives. However, an alternative non-medicalized account of individual-level normalization might support breaking down the barriers between those with disabilities and those without, by, for example, enabling people with disabilities to be normalized by virtue simply of where they live and who they relate to in the world. On both of these accounts, however, the justification for, and target of, intervention is the individual with impairments.

The social model discourse

At its heart, the social model of disability – or, more accurately, the United Kingdom social model of disability – stands in direct opposition to the medical model discourse because it claims that any attempt to make any kind of value judgements on the basis of the statistical deviation of a person's physical or psychological functioning is invalid. The social model discourse does not seek to deny that people have impairments of functioning, but rather argues that it is wrong to say that there is anything intrinsically bad in the fact that some people have certain abilities, while others do not, by reason of their impairments. It is incorrect, therefore, to make any normative claims about the nature of our obligations towards people on the basis of their impairments alone.

The evaluative component of the social model discourse of disability centres around a claim that society has failed to come to terms with the reality of the individual differences associated with impairment. On this account, the concept of disability is decoupled from the descriptive fact of impairment, functioning evaluatively to support a moral argument that can justify efforts to mitigate the effects of this failure. In contrast to the medical model discourse, a person is not disabled by virtue of having a particular impairment. Rather, a person is disabled by society's inability to meet the needs of people with impairment, because of the failure to recognize that impairment is not, in and of itself, a bad thing. Indeed, the concept of disability evaporates once we acknowledge, and respond appropriately, to the value-neutral observation that difference is characteristic of the world in which we live. This, so the argument goes, is how we can make sense of our obligations to those with impairments.

Making sense of the moral obligations that are derived from the social model discourse does depend, however, on how the harm associated with society's failings is accounted for. First, an internal source of harm can be identified. On this account of harm, members of society hold negative attitudes towards difference that lead to harm being caused to people who are different. Here, harm might be caused directly through the behaviours that result from members of society holding these negative attitudes, or indirectly through institutional practices that operate by expressing the negative attitudes held by those who have devised or instigated such practices, e.g. see references. ^5,6 Secondly, an external or structural source of harm can be identified. On this account of harm, the capitalist mode of production that underpins advanced modern societies shapes social institutions and practices that necessarily exclude those members of society who do not fit into the operational requirements of this economic system. Here, the functioning of contemporary capitalism causes harm to people with impairments because these individuals cannot fulfil the roles of producers and consumers of goods and services in the manner expected of them. On the first account, our primary concern is with the harms associated with prejudice, discrimination and interpersonal exclusion. On the second account, our primary concern is with the harms associated with structural patterns of disablement, labour market inequalities and socio-political exclusion.

The moral imperative to improve the lives of people with impairments by eliminating the harm caused by society's failings is substantiated on the basis of these internal and external accounts of harm. From the internal perspective, it follows that we ought to act to remove prejudice and negative attitudes through education programmes, antidiscrimination or hate crime legislation. We ought also to modify the use of certain interventions (the classical case in clinical ethics being the use of artificial reproductive technologies) such that these interventions do not operate to express prejudicial attitudes towards those living with impairment. From the external perspective, we ought to aim for nothing less than the transformation of the societies in which we live. Some such necessary transformations will be relatively minor, involving the introduction of new technologies of enablement, such as wheelchair ramps. Other transformations will be far more radical. ⁷ Intervening to re-design labour markets and welfare systems such that they function to include rather than exclude, or actively seeking to replace capitalism with a mode of production judged to be less harmful to those living with impairments, would all follow logically from identifying the moral failings associated with the ways that contemporary societies are structured, both economically and politically.

Both the medical and social model discourses occupy two extremes, defining the concept of disability in either individual or social terms, with associated evaluative differences. This distinction between disability understood as individual impairment, and disability understood as social failure, has been instrumental in the development of disability studies as a discipline, and in conceptual analyses of the nature and scope of moral duties towards people with disabilities within applied ethics. ^3,8 Increasingly, however, there has been a drive towards the development of more nuanced accounts of disability that incorporate both individual and societal levels of explanation. ^9–12 Indeed, one might better understand different discourses of disability as sitting on a descriptive–evaluative spectrum between the individual with impairments, on one end, and the social context within which that individual lives her life, on the other. The following three discourses are all shaped by dissatisfaction with aspects of the accounts offered by the medical and social model discourses, and offer a more complex account of the relationship between individual and societal levels of explanation in elucidating a concept of disability.

The phenomenological discourse

The phenomenological discourse, as I have (not unproblematically) termed it here, refers to a family of accounts that lie at the intersection of different but related intellectual traditions in the social sciences and humanities. Shaped by theories of embodiment, narrative and critical realism in medical sociology, and continental and feminist traditions in ethics, the phenomenological discourse places the individual's experience of living with impairment in the world at the heart of the concept of disability (cf see Scully ¹³ ).

In line with the medical model discourse, there is a broad acceptance that something evaluative can be said about a life lived with impairment. If aspects of the world are shut off to a person because, for example, she lacks certain sensory capabilities, or if bodily impairments cause pain, emotional distress or discomfort, then it does seem coherent to say that she would, prima facie, be better off if she was not so impaired. Protagonists of the phenomenological discourse would not, therefore, dismiss out of hand the claim that value judgements cannot be made when the reality of impairment means an individual is unable to do certain things, or is cut-off from having certain experiences, that one would recognize, intuitively, as being a component of a good life. However, following the social model discourse, the phenomenological discourse also agrees that being impaired, in even the most profound way, cannot be said to be intrinsically bad, such that moral obligations can straightforwardly be identified to rectify such impairment. Instead, the extent to which a person is disabled by his or her impairment depends entirely on how that person experiences being different, as an embodied and socially embedded individual. One must recognize, therefore, that impairments are inscribed onto, and exist within, individuals' bodies, ¹⁴ and that experiences of bodily difference are socially embedded, relationally orientated, temporally contingent and fundamentally moral in character. The concept of disability elucidated here is intersectional and fragmented, carved out at the interface between impairment and (inter-)personal (age; ethnicity; gender; sexuality), and social factors (relationships with others; care policies and practices; institutional arrangements; political systems) that shape each and every individual's experiences of being-in-the-world. To know disability then means engaging with, and gaining a deep understanding of, the ways in which individuals living with impairment are embedded and immersed within their everyday worlds. Personal stories through which these individuals can give accounts of these experiential encounters with the worlds in which they inhabit are seen to be a primary mechanism for gaining such understanding.

What follows ethically from this discourse of disability? If disability is conceptualized through the lens of the personal experiences of individuals living with impairment, then evaluative judgements made about a life lived with disability must be situated within the ways that each individual living with impairment ascribes meaning and value within her personal experiential narrative. The goodness or badness of a life lived with impairment takes shape through the interpretation of each and every experience that a person has. The nature and substance of an obligation to act towards that person in a particular way is elucidated through the emotive, personal, contingent accounts that she, and those who stand in relation to her, are able to offer. From a phenomenological perspective, ethical judgements made in relation to disability will be relative to the experiences of each and every person with impairment, requiring us to ‘imagine ourselves differently situated’, such that we can expand our moral horizons to better understand and support individuals' self-projects. ¹⁵

The welfarist discourse

For Guy Kahane and Julian Savulescu, ¹⁶ architects of the welfarist discourse of disability, the descriptive and evaluative meaning of the concept of disability also manifests itself through an understanding of the ways that individuals stand in relation to their social worlds. However, in contrast to the protagonists of the phenomenological discourse, it is not the embodied personal experiences of such a relationship that ground our understanding of disability, but rather a particular consequentialist account of morality: the theory of welfarism. Advocates of this ethical theory claim that there is a single moral value, wellbeing (or welfare), which underpins morality, and that the maximization of wellbeing should guide our moral judgements.

In contrast to the discourses examined thus far, the welfarist discourse approaches a conceptual account of disability from an evaluative starting point. Kahane and Savulescu ask what it is about the everyday use of the expression ‘disability’ that gives it moral force, and conclude that it is reduced wellbeing that encapsulates disablement. In their wellbeing-orientated account of disability, an individual and social dimension is preserved. First, the welfarist discourse maintains that certain intrinsic characteristics of a person can quite plausibly impact negatively on that person's wellbeing and, therefore, can be said to be disabling. This refinement of the medical model discourse shifts the conceptual focus of disability away from the intrinsic negative evaluation of individual impairment as defined in terms of statistically normal functioning, demonstrating by way of a number of ‘disability dilemmas’ how a broader sense of a ‘stable physical or psychological property’ of a person can potentially reduce her wellbeing. The word ‘potentially’ here is important because, for Kahane and Savulescu, whether that person in fact has a disability (that is to say, whether her wellbeing is reduced by this stable property) is dependent on the relationship between the individual and her social circumstances: the ways in which her physical or psychological make-up shapes how she lives her life. Disabling circumstances would include social situations in which, because of the physical or psychological properties of a person, that person has a lower quality of life. These would likely include many of the circumstances highlighted within the social model discourse; for example, the structural constraints on opportunities for political or economic participation, or the prejudicial or discriminatory actions of others. In this sense, determining whether a person is disabled or not depends entirely on making judgements about that person's wellbeing through observing who that person is, and how she lives her life. Like the phenomenological discourse, the concept of disability developed by Kahane and Savulescu is more fluid and transitory than the stable and fixed accounts offered by the medical and social models.

By way of illustrating how the welfarist discourse of disability would work in practice, we might consider the case of the nervous academic giving a conference presentation. When stood at a lectern delivering a conference paper, the academic is rigid with fear, sweats profusely and is unable to deliver her paper at the level she expects of herself. If we are able to identify that this academic is nervous because she has a nervous disposition which can be observed as an intrinsic character trait, then we would argue that she is disabled in those social situations in which her nervousness leads to a reduction in her wellbeing. Thus, when delivering her paper in front of an academic audience, she has a disability. In contrast, when sat in her office writing up her paper for publication in a journal, her nervous disposition plays no role in her ability to convey her ideas, and she gains pleasure from writing a piece of work that she believes will be well received. Her wellbeing is no longer compromised; she no longer has a disability.

Because the welfarist discourse conceptualizes disability from a particular ethical theory, the moral obligation to take action to maximize wellbeing follows straightforwardly from Kahane and Savulescu's conceptual analysis. Recognizing that the concept of disability is substantiated through both the intrinsic physical and psychological properties of a person, and the social circumstances in which she lives her life, two ways to ‘enable’ her can be identified. One by changing her social circumstances, and the other by altering her wellbeing-affecting intrinsic physical or psychological properties. It will, of course, be more realistic, more economical, and arguably more just, to increase a person's wellbeing through the first approach in most cases. Taking steps to make easy-read information available to a person with mild cognitive impairments such that she can better participate in society could, for example, have a huge impact on her wellbeing in ways that attempting to intervene medically to treat her impairment might not. In other cases, the most appropriate course of action will be less clear. The nervous academic might indeed be better off by being exposed to some form of pharmacological or psychological intervention that will modify her nervous disposition, rather than taking steps to avoid all situations in which she is required to speak in public.

As Kahane and Savulescu recognize, further conceptual and empirical work is required before their argument can be applied in practice. First, substantiating their argument depends on an agreed account of wellbeing. Following Parfit, ¹⁷ three possibilities are considered: hedonic, desire-satisfaction and objective list accounts. The usefulness of the welfarist discourse would depend on consensus being established about which one, or more, of these accounts do justice to grounding an understanding of the quality of our lives. Second, an empirical framework within which accurate evaluations of wellbeing can be made, on whatever agreed account of wellbeing we settle on, is needed. The measurement of wellbeing is important because the valid application of their argument requires us to be able to ascertain, first, whether the person's wellbeing is, in fact, reduced, in the circumstances in which that person lives her life, and, second, whether any proposed intervention would result in her wellbeing being maximized.

The capabilities discourse

The fifth and final discourse – the capabilities discourse – also takes an evaluative approach to anchoring the concept of disability. Developed within welfare economics by Amartya Sen, ^18,19 and further developed and applied within political philosophy, ethics and disability theory by Martha Nussbaum and Sen, ²⁰ and Nussbaum ²¹ the capabilities approach makes the central claim that human flourishing depends on individuals having certain capabilities, or real-world opportunities, based on their personal and social circumstances. Without such opportunities, human life is impoverished. Nussbaum ²² outlines 10 such capabilities that she believes lie at the heart of human flourishing: life; bodily health; bodily integrity; senses, imagination and thought; emotions; practical reason; affiliation; other species; play; and control over one's political and material environment.

In contrast to the four discourses examined so far, the capabilities discourse does very little to develop the descriptive component of the concept of disability. When applying their arguments to the lives of people with impairments, capability theorists make an assumption that there are certain people in society who have disabilities; those with impairments as elucidated within the medical model discourse. Here, the concept of disability comes to the fore in terms of its evaluative rather than descriptive meaning, as a practical concern for social justice, equality and substantive freedom. ^21,23 From a capabilities perspective, it is the asymmetry of opportunity borne out of the reality of living with impairment that leads to people with disabilities being disadvantaged in society. These disadvantages, which are associated with the lack of real-world opportunities for people with disabilities in our societies, are comparable to the disadvantages facing other groups: women, transnational migrants and non-human species. ^21,22 On the account of distributive justice advanced by Nussbaum, the equality of opportunity to flourish is of normative value. Therefore, there is a moral imperative to ensure that people living with impairment are provided with such equality of opportunity. In this sense, the capabilities discourse is a call to arms: the claim that decisive action must be taken so that people living with impairment (and others) are enabled to reach at least a minimal threshold level for each of the capabilities outlined above.

It follows that the extent to which people living with impairments are able to live their lives in good health, assisted to reason and act on the basis of their thoughts and emotions, enabled to develop friendships and to engage in community activities and personal hobbies, and supported to participate in political and economic activities, will determine the scope of our duty to help these individuals to flourish. In some socioeconomic contexts, there will clearly be much work to be done in ensuring that people living with impairments have these capabilities, even those of the most basic form. In all contexts, providing individuals with even the minimal level of real-world opportunities will be both conceptually and practically challenging, as is evidenced by the difficulty in determining how persons with profound intellectual impairment might be able to gain political control over their environment. ²⁴

It is important also to acknowledge that there is potential overlap here between the capabilities discourse and the welfarist discourse. It could be argued, for example, that the moral force behind the claim that all individuals reach at least a minimal threshold level for each of the capabilities lies in maximizing these individuals' wellbeing, and not in some more abstract notion of their flourishing. If this argument were to hold, then the capabilities approach, as it is applied to disability at least, could complement a welfarist account if it was agreed that Nussbaum's 10 capabilities provide a convincing (objective list) account of wellbeing. In this way, the capabilities approach would essentially substantiate the welfarist discourse of disability as is required, defining wellbeing, clarifying the nature of the moral obligations to act in particular ‘enabling’ ways and supporting the empirical project of evaluating wellbeing via the activities to measure individuals' capabilities that are currently underway. ²⁵

Action-guiding

First, recognizing that the concept of disability can be constructed along different descriptive and evaluative axes means that the deployment of the word ‘disability’ in health-care practice will shape the very nature of both the clinical and ethical debate concerning people with disabilities. Whether, and how, a clinical issue involving a person with a disability is interpreted as an ethical issue will differ depending on how the concept of disability takes shape in the minds of those providing and receiving medical care and treatment. Accordingly, each discourse of disability will have a direct impact on how clinical ethics support (and medical practice more broadly) is framed. These five discourses will determine whether, for example, an ethics referral is instigated in the first instance, how the facts relevant to the dilemma are identified and relayed to the clinical ethics committee (CEC), and how the ethical questions for moral deliberation are substantiated.

Second, recognizing that each discourse is infused, implicitly or explicitly, with evaluative meaning reinforces the point that different conceptual accounts of disability involve making judgements of moral value that shape how one should act towards those individuals who fit the varied descriptions of being ‘disabled’. As such, these five discourses will guide moral reasoning directly, assisting CECs and clinical ethicists to support health-care practitioners in making normative judgements about their decisions and actions relating to the care and treatment of people with disabilities.

In most cases, the action-guiding implications that follow from these five discourses are relatively straightforward to identify, and the ethical arguments that lie at the heart of these discourses could usefully frame moral reasoning within clinical ethical deliberation. Whether priority is given to (i) a duty to pursue normalizing cures or treatments; (ii) a duty to tackle social inequalities within health care; (iii) a duty to adhere to the good in patients' own experiences of living with impairments; (iv) a duty to maximize patients' wellbeing; or (v) a duty to ensure that patients have practical opportunities to flourish, would depend on how competing moral imperatives were balanced in assisting health-care practitioners to make ethically sound decisions.

Process-guiding

Aside from the normative implications for health-care practice, it is also important to note that these discourses of disability are borne out of particular theoretical accounts of morality, with very different philosophical heritages. As such, these ways of conceiving of disability can highlight differences in the ways that we approach the practice of ethics, in terms of process rather than just content. This observation reflects an important distinction between what might be referred to as the ‘[bio]ethics of disability’ and ‘disability [bio]ethics’, ¹³ and demonstrates how the relationships between disability and ethics in these discourses inform how CECs should go about their business, shaping the ethics support enterprise and validating certain ways of ‘doing’ ethics within that enterprise.

Those discourses which are built upon a particular ethical theory, such as the welfarist account, would require CECs to be well versed in ethical theory, skilled in reasoning from ethical principles and functioning in a manner in which these theories and principles can be applied. In contrast, other discourses would render this approach conceptually redundant. Taking the phenomenological discourse as an example, it would follow that the practice of clinical ethics support would require an antitheoretical approach, embracing imaginative forms of moral engagement that enable CEC members to ‘put [themselves] in the place of others’. ¹⁵ Conceptualizing disability, and framing ethical issues in relation to the care and treatment of people with impairment, from a phenomenological position could have a number of implications for shaping and re-shaping the practice of clinical ethics support. If it was accepted that the relevant moral considerations emerge out of individuals' moral experiences then CECs would need to operate in ways that allowed individuals' experiential narratives to be heard, and considered appropriately. Ethics support would require the person with disabilities, and those who stand in relation to her, to be placed at the heart of the process. This way of conceptualizing disability would, therefore, make a strong claim for ensuring that patients and relatives are present at – and active contributors to – practices of providing clinical ethics support to health-care practitioners. The importance of replacing abstract or procedural models for structuring the ethical debate in clinical ethics support with more grounded, interpretative and deliberative approaches, such as the moral case deliberation method, ^26,27 would also come to the fore.

By way of brief conclusion, I hope to have shown how making sense of disability can have both action- and process-guiding implications for the practice of clinical ethics support, once it is recognized that disability is a contested concept infused with both descriptive and evaluative meaning. While teasing out the ways that the different conceptual meanings that structure deliberations around good health-care practice for people with disabilities will require much theoretical and practical self-reflection, it is a process that cannot, and must not, be avoided. The potential benefits for enhancing the quality of ethics support are significant.