‘Doing’ normativity in disability studies: soft suggestions towards an empirical ethics of disability

Abstract

As a field concerned with improving the lives of disabled people, disability studies has always been a normative field of inquiry. For this reason, Vehmas and Watson (2016) urge disability scholars to engage with normativity more explicitly. This article builds on Vehmas and Watson to consider how disability scholars can ‘do’ normativity so as to arrive at normative insights attuned to the lives of disabled people themselves. The article has two aims. The first is to examine how normativity has been ‘done’ in disability studies research up to the present. Here, the article locates three problems that hinder the pursuit of normative insights that have sufficient bearing on disability experiences. The second is to make some suggestions for more reflexively ‘doing’ normativity in disability studies in a way that does yield insights of this kind. For this latter goal, the article draws on ideas from the field of empirical ethics.

Points of interest

• This article regards disability studies as a field that seeks to improve the lives of disabled people. It is therefore a ‘normative’ field of study.

• The article asks how disability scholars can gain insights to improve disabled people’s lives in a way that responds to the lived experience of disabled people themselves. The article refers to this as ‘doing normativity’.

• The article finds three problems in how disability scholars usually ‘do’ normativity to gain insights of this kind.

• To work on these problems, the article introduces three insights from a field of research known as ‘empirical ethics’.

Keywords:

• Disability
• normativity
• ethics
• dependency
• empirical ethics

Introduction

The principal concern of the field of disability studies has always been to make the lives of disabled people better. Growing out of the disabled people’s movement, the field has had an emancipatory goal from its inception: its raison d’être was to formulate and execute a research agenda informed by the activism of disabled people who sought to eradicate the social and material inequalities that marked their everyday lives (Watson and Vehmas 2020a; Barnes 2003; Oliver 1992; Stone and Priestley 1996; Vehmas and Watson 2016; Shakespeare 2014). Central to this endeavour were principles such as equality and justice for disabled people. Although more recent developments in disability studies, such as the rising influence of postmodern and poststructuralist approaches, have generated disagreement about the degree to which disability studies remains an emancipatory endeavour (Barnes 2020; Vehmas and Watson 2014), the basic premise is still valid: the field of disability studies seeks to improve the lives of disabled people.

Another way of putting this is that disability studies has always been a highly normative field of inquiry: normative in the sense that it has an evaluative impulse, as it is concerned with matters of good and bad, right and wrong, and so on. This claim, however, has proven somewhat more controversial. As Vehmas and Watson (2016) argue, the field of disability studies may have a clear normative orientation, but this orientation is rarely acknowledged or analytically developed. In fact, some approaches within disability studies, such as critical disability studies, are even suspicious of the idea of normativity. In such approaches, argue Vehmas and Watson, normativity is mistakenly thought to be synonymous with ‘normal’ and ‘normality’, which are believed to be responsible for much of the oppression of disabled people, and subsequently disavowed (Goodley 2014; Garland-Thomson 2011; Campbell 2009). As a result, the normative dimension of disability studies—its preoccupation with the well-being of disabled people—is generally not explicitly developed or theorized in the field. This is strange, given the field’s emancipatory aims, and also given the ‘moral character’ of disability itself: how the very categorization of disability hinges on norms and values about ‘good’ health, ‘right’ abled embodiment, and ‘true’ human well-being (Scully 2009, 24; Vehmas 2004). If disability studies is a field with clear normative aspirations, and ‘disability’ is itself a concept with moral content, the coherence and relevance of disability scholarship could benefit from engaging with normativity more explicitly—from thinking through how normativity can be ‘done’.

By ‘doing’ normativity, I refer to the process of arriving at normative insights and developing normative judgments about the world around us with the goal of improving it. Vehmas and Watson (2016, 4) believe the best way of doing so is by using ‘the analytic tools provided by philosophical ethics’. This may sound abstract, but they do not intend it to be. They insist that normative analysis must be grounded in empirical data, to make sure that it remains connected to the lived experience of disability.

I applaud Vehmas and Watson’s plea for more explicit engagement with normativity in disability studies. I also agree on the importance of involving empirical inquiry in normative reflection. Nonetheless, I worry that their proposed solution might fall short of its goal. Although Vehmas and Watson want to be responsive to empirical reality, their article does not specify how the researcher is to involve empirical knowledge in the drawing up of normative conclusions. The three-step method they propose (2016, 6–7) does not detail how empirical reality is to bear on ethical theory. For this reason, it remains unclear how their method can generate normative insights that are sufficiently attuned to the lived experience of disabled people themselves—and can thus actually help improve their lives.

I want to offer in this article a reflection on how normativity may be ‘done’ in disability studies so as to develop insights of this kind. The article has two goals. The first is to explore how normativity has typically been ‘done’ in disability studies research up to the present: to render explicit what has so far largely remained implicit. The second is to make some suggestions for more reflexively ‘doing’ normativity in disability studies in a way that yields insights that are sufficiently in touch with the lives of disabled people themselves. For this latter goal, I introduce several insights from the field known as empirical ethics. This field, situated on the intersection of moral philosophy and the social sciences, has developed a plethora of ideas on how the empirical and ethical are to be combined—some of which I believe are significant for disability studies. In offering these suggestions, I argue for a move towards an ‘empirical ethics of disability’ as one way to fill the ‘lacuna’ Vehmas and Watson (2016, 2) observe in the engagement of disability studies with normative questions.

I begin the paper by considering how materialist, cultural, and critical realist approaches to understanding disability tend to engage with normative questions. My argument is that each approach has its own style of ‘doing’ normativity. I illustrate these ways of ‘doing’ normativity by discussing various disability scholars’ writing on dependency and care. The literature on care and dependency forms a fitting case study, because it has been a controversial topic in disability studies since its inception, with distinct ethical ramifications (Watson et al. 2004; Hughes et al. 2005; Kröger 2009; Beckett 2007; Kittay 2011; Kelly 2013). Next, I list three problems these styles of ‘doing’ normativity face if they wish to generate normative insights that are sufficiently in touch with the lives of disabled people themselves. Finally, I introduce three insights from the field of empirical ethics that might change how disability studies ‘does’ normativity for the better, again drawing on examples of research on dependency and care.

Three styles of ‘doing’ normativity in disability studies

In this section, I consider how normativity has typically been ‘done’ in disability studies. To do so, I follow Shakespeare’s (2014) tripartite typology of approaches to the study of disability—which he dubs ‘materialist’, ‘cultural’, and ‘critical realist’ approaches—and parse the ways in which each approach engages with normativity in the research it produces. My aim is to demonstrate that different approaches to disability develop different kinds of normative argument. I illustrate each style of ‘doing’ normativity through examples of disability literature on care and dependency.

To be sure, Shakespeare’s typology, like any typology, has its limitations. Insofar as it gathers the work of divergent authors under uniform rubrics, it reduces some of the diversity within various approaches to disability. However, I believe Shakespeare’s typology generally reflects the diversity of approaches to disability well—as is evidenced, for instance, by the second edition of the Routledge Handbook of Disability Studies, which features chapters on all three approaches (Watson and Vehmas 2020b). Shakespeare’s typology is in part critical, but my goal here is not to assess if these approaches to disability are in themselves satisfactory. I take all as distinctive contributions to disability studies.

Materialist approaches to disability

Materialist approaches to disability are informed by the social model of disability (Oliver 1990; Morris 1993; Barnes and Mercer 2003; Thomas 2004a; 2004b; Silvers 1998; Barnes 2020). The social model, as is well known, claims that disability must be understood not as an individual bodily condition, but as a product of social circumstances. To do so, it introduces a distinction between ‘impairment’—which refers to a specific bodily condition—and ‘disability’—which refers to the social disadvantage resulting from having an impairment due to the ways in which a society is organized. The social model subsequently focuses on the latter, typically by exploring the socio-economic conditions that lead to the marginalization of disabled people.

As Vehmas and Watson (2016) show, authors adopting the social model approach to disability rarely specify its ethical underpinnings. Nevertheless, the social model usually comes with a clear normative programme (Samaha 2007). It is mobilized to show that disability is a product of social organization and, hence, must be understood as a form of social oppression that unfairly disadvantages people with impairments. Indeed, it was first conceived as a tool to strive for equality and justice (Silvers 1998). As Carol Thomas (2008, 15) puts it: ‘The social model is partisan; it is “on the side” of disabled people and seeks to further their common sectional and individual interests, their social and political equality and their full civil rights’. In this pursuit for civil rights, liberal principles like equality, autonomy, and justice nowadays tend to be central to social model thinking. Some Marxist pioneers of the social model excoriate this turn to liberal human rights (Oliver and Barnes 2012; see also Söder 2009), advocating instead a return to the social model’s materialist roots (Gleeson 1997). Although critical of liberalism, their critique does not so much imply a rejection of principles like equality, autonomy, and justice, but rather a different way of substantiating them, inspired by Marx’s materialism. What matters for my analysis is that proponents of the social model (whether liberal or Marxist) draw on a preconfigured set of principles to arrive at normative judgments, whatever their precise content. These principles constitute a framework by which to assess social practice.

To apprehend how these values are utilized in practice, consider the early writings of social model-inspired thinkers on dependency and care (Morris 1997; Silvers 1995; Oliver 1989; Barnes 1990; Shakespeare 2000). These writings were uniformly characterized by suspicion towards dependency. For instance, in her famous piece ‘Care or Empowerment?’ (1997), Morris forcefully denounced policies centered on the idea of ‘care’ for disabled people, because she believed these to entrench prejudice towards disabled people by depicting them as ‘dependent’ or ‘needy’. In her view, such policies were not designed to address some pre-existing dependency amongst the disabled individual. Rather, such policies themselves rendered disabled people dependent. Hence her conclusion: ‘One cannot… have care and empowerment, for it is the ideology and the practice of caring which has led to the perception of disabled people as powerless’ (1997, 54). For Morris, ‘independence’ for disabled people ought to be the goal of social policy, and this goal could only be achieved through ‘empowering’ policies such as direct payment legislation; the latter would provide disabled people with control and therefore prevent them from becoming dependent. Morris’ critique of these policies of ‘care’ thus hinges on a binary opposition of dependency on the one hand and liberal values such as autonomy, equality, and independence on the other. Her dismissal of these policies is achieved by framing ‘dependency’ as the antithesis of the moral principles she espouses. The argument runs: the policies create dependency, thereby obstructing independence; hence, they are ‘bad’.

Of course, these ideas on dependency and care have since been reconsidered by many disability scholars (Watson et al. 2004; Hughes et al. 2005)—including by Morris (2001) herself. Morris’ argument must be understood in terms of 1990s disability activism around personal assistance in the independent living movement (Shakespeare 2014; Kittay 2011). What matters here is not whether Morris was right to dismiss dependency, but how she arrived at her normative conclusions—namely, through application of the guiding principles of equality, autonomy, and justice. These principles are not explicitly argued for, but mostly taken for granted; a definition or interrogation of the principles themselves is not part of the argument. Rather, the principles are applied on empirical reality ‘top-down’: a case is ‘judged’ by measuring it up against the principles. Molewijk and colleagues (2004) call this style of ethical reasoning ‘prescriptive applied ethics’: a moral theory is employed to judge social practice.

Even if its normative assumptions tend to remain implicit, the ‘top-down’ style of analysis is typical for the social model approach to disability. It fits with what Thomas (2008) calls the ‘partisan’ nature of the social model, which has functioned as a normative framework to pinpoint and remedy social injustice as much as it has served as a theoretical model to understand disability. Given the origins of the social model in disability activism, this tight link between social analysis and normative principles is unsurprising. The benefit of this approach to ‘doing’ normativity is that it provides a clear benchmark from which to assess social practice. The value of the social model approach is evident from the many influential studies it has generated to tackle the discrimination of disabled people.

However, the ‘top-down’ style of ‘doing’ normativity that characterizes the social model also harbors some problems. I wish to single out two issues here. First, as Molewijk and colleagues (2004) maintain, a ‘top-down’ style of ethical analysis leaves no room for interrogating the ethical principles in use; principles are applied externally and themselves remain static. Theory is granted the final authority on ethical questions. The ‘top-down’ style of ethical analysis thus lacks the means to critically interrogate its own ethical assumptions. It is questionable whether such a rigid moral framework can be responsive to the complexity of real-life moral tensions and dilemmas, if it is not amenable by the vicissitudes of everyday life. Morris (1997) analysis of dependency is a case in point. By drawing on the ideal of autonomy to denounce dependency, she left little space to consider more ambiguous cases of dependency: for instance, what Scully (2014) calls disability-related ‘inherent vulnerabilities’, which inevitably result in forms of dependency that cannot be willed away.

Second, and relatedly, this way of ‘doing’ normativity seems to have little time for the judgments, values, and strivings of the actual people who are part of the practices under scrutiny. If moral theory is applied externally, there is no place for the forms of normativity internal to practice (Sayer 2011; Pols 2015; Walker 2008). These include the strivings, tastes, aspirations, values, ideals as they are put into practice by social actors; but they also include the scientific ethos and epistemic values of the researcher studying social practice. As a result, the ‘top-down’ style of ‘doing’ normativity risks losing sight of the lived experience of disabled people themselves—and also of an important critical resource for probing its own normative vantage point. For these reasons, it is unclear to what extent the materialist style of ‘doing’ normativity can generate normative insights that are sufficiently complex, nuanced, and in tune with practice—and thus, provide insights that can actually help improve the lives of disabled people.

Cultural approaches to disability

Cultural approaches to disability, also known as ‘critical’ or ‘postconventional’ disability studies, are informed by postmodern theories of discourse, the subject and the body (Goodley 2013; 2014; 2018; Goodley et al. 2019; Garland-Thomson 2002; McRuer 2006; Campbell 2009; Meekosha and Shuttleworth 2009; Shildrick 2009). This approach is critical of the split between ‘impairment’ and ‘disability’ introduced by the social model. It turns to the analysis of ‘the cultural, discursive and relational undergirdings of the disability experience’ (Goodley 2013, 634) to show how bodily impairment is itself a social-cultural construction, rooted in what Shildrick (2012, 37) calls ‘prevailing socio-cultural normativities’. In other words, the field of critical disability studies examines the socio-cultural production of disability and its manifestations in normalizing discourses and practices. It analyses why and how the ‘putative divide’ (Shildrick 2012, 35) between disabled and non-disabled is maintained in discourse and how disability disrupts and ‘queers’ normative conceptions embodiment—or what McRuer (2006) calls ‘compulsory able-bodiedness’.

Evidently, the field of critical disability studies is explicitly concerned with normativity; however, this engagement is explicitly negative. Authors taking the cultural approach to disability tend to be sceptical of normativity, which they associate with ‘normality’ and the ‘normate’ (Garland-Thomson 1997). These authors take cues from thinkers like Foucault (2003a; 2003b) and Butler (1999; 2004), who conceive of ‘normativity’ and the ‘normative’ as discourses of normality that legitimate exclusion and even violence against those considered ‘abnormal’ or ‘deviant’. In the same way, critical disability theorists refer to normativity as the set of socio-cultural understandings about ‘standard’ embodiment that lead to the exclusion of disabled people. For this reason, normativity is regarded as a source of oppression, and the main task the field of critical disability studies sets itself is to challenge it by deconstructing the categories and definitions that drive the disabled/non-disabled binary. (In this way, as Vehmas and Watson (2016) point out, this approach is itself equally normative.) At the same time, critical disability theorists reject the liberal values associated with social model thinking, contending that these cannot challenge the normative image of autonomous personhood that grounds ableist attitudes and prejudice. In this view, equality is tantamount to ‘sameness’, and therefore to assimilation and the eradication of difference—what Campbell (2009, 14) calls the ‘violence of normalisation’.

Thus, while it is sceptical of normativity as such, the cultural approach to disability articulates its own ethic, too. For Shildrick (2012, 35), this ethic boils down to the task ‘to mobilise both discursive analysis and substantive intervention, each of which can demonstrate the capacity of disabled embodiment to perform a radical queering of normative paradigms’. In other words, the ethical ‘moment’ in critical disability studies comes when normativity itself gets questioned, challenged, and disrupted. At stake here is a kind of ethic of difference: a responsibility to accommodate difference. In the cultural approach to disability, normativity is ‘done’ by undoing it.

To witness this, consider the study of Gibson et al. (2012) on dependency on assistive technologies such as wheelchairs. Gibson et al. write about Mimi, a young girl with a neuromuscular condition who relies on tracheostomy tube for breathing, a gastronomy tube for nutrition, and a power wheelchair as her main mode of mobility. In the paper, they present excerpts from interviews with Mimi and accounts of Mimi’s interactions with her assistive technologies to explore how Mimi experiences her dependency. The authors draw attention to Mimi’s perception of her wheelchair as simply ‘part of me’ to argue that ‘[t]he wheelchair is incorporated into a body that has no start or end point but remains open’ (2012, 1896). In this way, they seek to reimagine human subjects as open and fluid ‘assemblages’, moving in and out of changeable connections to other bodies, objects, technologies, etc. In doing so, Gibson et al. deconstruct the binary opposition between ‘dependence’ and ‘independence’, which disregards the interconnectedness and interdependence of all being. This leads the authors to reject the notion of stable, autonomous personhood presupposed in liberal conceptions of the self, in favour of an account of subjectivity anchored in fluid and open-ended ‘becomings’. The authors thus ‘do’ normativity by dissecting the norms of independent, autonomous personhood that, in their eyes, ‘limit human becoming for all persons’—for instance, in the rehabilitative practices where achieving independence tends to be the main goal (2012, 1896). Their argument is thus characteristic for how normativity is ‘done’ by critical disability theorists: by attempting to undo it.

The cultural approach to disability has been characterized by some as ‘crypto-normative’, as it portends to resist normativity while actually pursuing a normative (yet often undeveloped) political agenda (Shakespeare 2014; Vehmas and Watson 2016). This accusation echoes a similar critique levelled at the postmodern thinkers who inspire the cultural approach. Foucault in particular has been lambasted for failing to explicate his normative commitments, even though (these critics suggest) his work consistently implicates them (Taylor 1984; Sayer 2011). The cultural approach is vulnerable to a similar critique. Indeed, Gibson et al. are unclear about their normative stance: their goal appears to be ‘making space’ for interdependence, but the moral underpinnings of their goal (probably some notion of freedom) remains unarticulated. However, given that critical disability theorists have often vowed their commitment to an ethic of difference, this critique is perhaps not entirely fair. The problem rather seems to lie in failing to accept this ethic of difference as properly normative. Nevertheless, it seems true that critical disability thinking appears hesitant to formulate concrete ethical directives for practice—another point raised by critics (Vehmas and Watson 2016). After all, the field is wary of ‘normativity’ and prefers deconstruction to the building of ethical theory. (Again, scholars such as Sayer (2011) and Mackenzie et al. (2014) have observed the same about Foucault and Butler, respectively.¹) While Shildrick (2012, 35) does regard ‘substantive intervention’ to be a core aspect of the ethic driving critical disability studies, the work provided by her and others tends to remain nebulous when it comes to concretize such interventions. The paper by Gibson et al. illustrates how this problem might haunt more practical applications of the cultural approach to disability: the authors insist that we must ask ‘what assemblages are the most productive and the least harmful to individuals and their carers’ in the practice of rehabilitation (2012, 1897), but provide no directions to assessing this, barring an undeveloped reference to the notion of ‘human flourishing’ (2012, 1898). The question is thus whether this way of ‘doing’ normativity does enough. If critical disability theorists seek to make ‘substantive intervention’ part of their project, they may need to engage in a more constructive form of ethical inquiry.

Critical realist approaches to disability

Critical realist approaches to disability are informed by the epistemological paradigm known as ‘critical realism’ (Danermark 2002; Danermark and Gellerstedt 2004; Bhaskar and Danermark 2006; S. J. Williams 1999; Shakespeare 2014; Watson 2020). Researchers working with this approach tend to be dissatisfied with the materialist and cultural approaches to disability, which they consider too one-dimensionally concerned with social construction (Bhaskar and Danermark 2006). The physiological aspects of disability (such as pain and bodily functioning) tend to get side-lined, these authors contend. Drawing on Bhaskar’s (1997) philosophy of science, critical realists approach disability as an ‘interactional’ phenomenon (Shakespeare 2014), which is produced in relations between various ‘levels’ of reality, such as the molecular, the biological, the psychological, the social, and so on (Danermark 2002). They see disability as an ‘emergent property, one involving the interplay of physiological impairment, structural enablements/constraints and socio-cultural elaboration over time’ (S. J. Williams 1999, 813). Importantly, for critical realists, disability exists outside our knowledge and ways of speaking about it; in this way, they introduce a split between ontology and epistemology they believe is lacking in materialist and cultural approaches to disability (Shakespeare 2014).

Along with this split between ontology and epistemology, critical realists also tend to advocate a split between empirical and normative analysis. This inclination could be a reflection of Bhaskar’s own; as Price (2019) points out, Bhaskar was originally focused on ontology and only began to consider its relationship to normativity relatively recently. At any rate, Bhaskar’s more recent work on integrating ontology and normativity is not invoked by disability scholars. Danermark is adamant that research can provide knowledge about ‘mechanisms and tendencies’, but seldom ‘produce practical knowledge in terms of “if you want to achieve x do y”’ (2002, 63). Similarly, Danermark and Gellerstedt (2004, 350–51) are explicit that critical realism ‘does not include tools for moral and political issues, such as ranking competing claims of resources’. For this purpose, critical realists introduce normative theories from elsewhere, which they subsequently apply on the analysis produced in their critical realist framework. Unlike the materialist and cultural approaches to disability, the critical realist approach is not univocal in its choice for a normative framework. The uses of theory range from Fraser and Honneth (2003) writings on recognition and redistribution to Nussbaum’s (2006) capability approach and the feminist ethics of care (Tronto 1993; Kittay 1999).

To grasp this way of ‘doing’ normativity, consider a chapter in Shakespeare’s own book (2014), called ‘Personal Assistance as a Relationship’. Shakespeare explores here how the personal assistance model to care delivery, in which disabled people receive payments to hire care personnel of their own choosing, gives rise to a care relationship between disabled people and care professionals. Shakespeare criticizes what he calls the ‘ideology of Independent Living’ (2014, 174), which he believes wrongly depicts the relationship between disabled people and their assistants as purely functional and transactional, ‘controlled by the disabled person… without the need for emotions such as gratitude, resulting in independence, choice, and freedom… and avoiding the sigma of dependency’ (2014, 175). Shakespeare draws on a slew of empirical studies to challenge this depiction, arguing that disabled people and their assistants often become engaged in emotionally affecting relationships. But his argument is not merely empirical. Recognizing that the assistant is always more than a ‘robot’ (2014, 175) means considering the rights and needs of assistants as well as of disabled people. Shakespeare invokes the feminist ethic of care to argue that ‘it would be wrong for the liberation of disabled people to be achieved on the back of the exploitation of their support staff’ (2014, 186). The ethic of care, thinks Shakespeare, can offer an account of the emotional and ethical dimensions of care to offer a richer picture of caring relationships between disabled people and assistants. In effect, Shakespeare is proposing to replace the ‘ideology of Independent Living’ with the feminist ethic of care as a lens to look at the moral dimensions of personal assistance—the latter allowing him to discern novel forms of oppression amongst assistants in the empirical studies he discusses.

Insofar as Shakespeare imports a moral framework to shed light on the empirical studies he surveys, his way of ‘doing’ normativity fits the mold outlined by critical realists like Danermark: normative conclusions come after the ‘fact’ of empirical studies by means of externally consulted moral theories. In this sense, the way of ‘doing’ normativity in the critical realist approach boils down to a version of what Molewijk and colleagues (2004) call ‘prescriptive applied ethics’, in which ethical theories are used to assess social practice. In this, it resembles the materialist approach, but compared to the former, critical realists are more explicit and reflexive about how and when they introduce normative theories into their thinking. Nonetheless, this style of ‘doing’ normativity prompts the same problems faced by the social model approach: since it works ‘top-down’ in applying theory to practice, it can render moral theory itself static and irresponsive to the complexity of actual social practice, and misses out on normativity internal to practice.

Moreover, while this approach makes an admirable attempt to develop a systematic and consistent moral analysis, it also introduces a new problem, rooted in the entanglement of ‘fact’ and ‘value’ (Putnam 2002; Sayer 2017). By insisting on separating ‘fact’ from ‘normativity’, critical realists appear to assume a strict dichotomy between facts and values. However, this dichotomy is increasingly considered inadequate by moral philosophers and social scientists alike (Putnam 2002; Murdoch 1970; Sayer 2017; Gorski 2013). This is because it ignores, for instance, that our ‘factual’ descriptions of the world are inevitably value-laden, as these descriptions are suffused with concepts that are both descriptive and evaluative. Such ‘thick concepts’ (B. Williams 1985; Kirchin 2017), like ‘kind’, ‘courageous’, and ‘cruel’—or indeed, ‘disability’, ‘dependency’, and ‘care’—challenge the idea that ‘doing’ normativity can be a final step in the analysis, after the facts have been gathered. The ‘gathering’ of the facts is itself a normative process inflected by our moral orientation; and hence, normativity is always already a part of the empirical reality we observe. As Thacher (2015, 328) puts it, ‘[w]hen we view a situation through the lens of [thick] concepts, our description already contains the seeds of our ethical conclusion about it, and when it comes time to act there may be no separate decision about what moral principles to apply’. And this means ‘doing’ normativity cannot come after gathering the ‘facts’. It is part and parcel of empirical inquiry itself.

Shakespeare’s chapter exemplifies this problem well. In one sense, Shakespeare is consulting the feminist ethic of care to better grasp and assess the interdependence and emotional ties that develop between disabled people and their assistants. But in another sense, the moral framework offered by this ethic also allows us to come to discern these aspects of caring in the first place! It is in this sense that observation cannot easily be uncoupled from our normative orientation—a point missed by critical realists who uncouple ‘fact’ from ‘normativity’.

The critical realist approach is most explicit about this ‘separatist’ account of facts and values. However, I should note that neither the materialist nor the cultural approaches seem to reflect on the imbrication of fact and value either. This should not come as a surprise, as the separation between reflects a widespread impulse in social research broadly conceived (Sayer 2011).

Suggestions towards an empirical ethics of disability

My discussion of these three styles of ‘doing’ normativity has pointed at three problems disability scholars run into in their normative analyses. Let me briefly list them in turn. The first problem resides in the ‘top-down’ style of ethical analysis found in the materialist and critical realist approaches. By ‘applying’ moral principles to arbiter social practices, such analyses threaten to render moral theory static and irresponsive to the complexity of real-life moral tensions and dilemmas, and also leave little room for forms of normativity internal to practice. (Vehmas and Watson’s suggestion to engage with normativity through the analytical philosophical method seems to imply a similar ‘top-down’ style of analysis; hence my reservations about their proposal.) The second problem resides in the separation of ‘fact’ and ‘values’. I traced this problem explicitly in the critical realist approach, but it is in fact not considered carefully in any of the approaches. Here, the problem is that scholars are insufficiently aware that normativity is always already a part of the empirical reality we observe—a point that, if we want to ‘do’ normativity right, ought to be explicated and explored. The third problem has to do with the sort of ethical directives these approaches produce. I noted of the cultural approach that its suspicion of normativity does not allow for constructive normative conclusions, meaning that it has trouble providing meaningful normative guidance. By contrast, the opposite seems true for the materialist and critical realist approaches; their rigid use of moral principles makes it unclear to what extent these approaches can generate normative insights that are sufficiently complex, nuanced, and in tune with practice—and thus, provide insights that can actually help improve the lives of disabled people. In effect, disability scholars are torn between giving too much or too little in the way of normative directives.

My overarching concern in signaling these problems is that the conventional styles of ‘doing’ normativity in disability studies might fall short of what I believe should be their aspiration: that is, to generate normative insights that speak to the nuances and complexities of the lives of disabled people—and hence, that might help to improve these lives in practice. On an analytical level, these problems spring forth from the interaction between ethical ‘theory’ and empirical ‘data’ and the sort of conclusions this interaction can generate. This issue is also at the root of my hesitation regarding the method proposed by Vehmas and Watson (2016), which in my view does not say enough about how empirical knowledge ought to inform moral reasoning.

In this section, I want to offer three suggestions to address these problems, by introducing a number of insights from the corner of moral philosophy known as empirical ethics (Ives, Dunn, and Cribb 2017; Landeweer, Molewijk, and Widdershoven 2017; Pols 2015; Musschenga 2005; van der Scheer and Widdershoven 2004). This field, which developed in the wake of the ‘empirical turn’ in bioethics and philosophy of science, grew out of a dissatisfaction with the normative insights produced by conventional philosophical methods that had dominated these fields. These insights, empirical ethicists argued, are not sufficiently sensitive to context nor to the reality of lived experience (Hoffmaster 1992; Musschenga 2005). In response, empirical ethicists began to consider how ethical and social-scientific inquiry might be combined to generate insights ‘more contextually aware and more grounded in the realities of lived experience’ than traditional normative theory (Davies, Ives, and Dunn 2015, 1). Normative inquiry, they argued, must involve qualitative research on the views, experiences, and practices of people who actually live with the moral tension or problem being studied. They thus frame their efforts as a correction of the tendency in moral philosophy to simply ‘apply’ moral principles to judge practices. Their methodological inventions for exploring moral tensions and answering moral questions have reinvigorated debates on how to ‘do’ normativity as I have defined it here.

The considerations of empirical ethicists may seem far removed from the field of disability studies, but they are not. After all, the purpose of all this is to generate context-sensitive normative insights about social practice—which is what disability studies, if it is dedicated to improving the lives of disabled people, should want to strive for as well. Some empirical ethicists are drawing on their methods to study issues around disability, mainly on the topic of care and support (Pols, Althoff, and Bransen 2017; Winance 2010). But these tend to be exceptions for now, and these authors do not typically frame their efforts as disability studies research.

Empirical ethics is a broad field encompassing many methodological approaches. It is not my aim here to rehearse their differences in detail. Rather, I want to highlight some ideas generated in this field that I believe are fruitful for opening up new avenues in disability studies research. I choose these ideas because they respond well to the problems I outlined above. They are not meant to represent the breadth of the field of empirical ethics; rather, they are suggestions that could aid disability studies in developing new styles of ‘doing’ normativity. Again, to demonstrate the benefits of these ideas, I will provide examples. This time, I will take these from empirical-ethical research on dependency and disability, some of which is my own.

Dynamism between ‘theory’ and ‘data’

A main preoccupation of empirical ethicists has been to rethink the relationship between ethical theory (in the form of principles, frameworks, and so on) and empirical reality (in the form of social-scientific empirical findings). Attempting to carve a space between the ‘top-down’ style of deductive reasoning that holds empirical reality to the standard of immutable ethical principles and a kind of particularist relativism that is satisfied with only describing the norms and values found in the field, empirical ethicists have been looking for ways to integrate ethical and empirical inquiry and thus create a more symbiotic relationship between the two. To be sure, a given moral theory or concept can still form the starting point of a normative inquiry; the point is rather that any such theory or concept itself becomes an object of critical interrogation, as the empirical analysis can lead researchers to interpret a given theory or concept anew, or even to reject it in favor of another. Hence, empirical ethicists do not merely allow their moral framework to be enriched or specified with empirical findings. They allow the empirical analysis to fundamentally question the moral framework they bring to the people and practices under study, so as to align normative insights more fundamentally with the vicissitudes of lived experience. There is no consensus as of yet on how this ought to be done, but there are plenty of ideas (see Davies, Ives, and Dunn (2015) for a systematic review). Whatever the precise method, the goal is utilize empirical findings in the (re)shaping of normative ethical theory to produce normative insights that are attuned to practice and lived experience.

To appreciate the kind of work this dynamism between ‘theory’ and ‘data’ can produce, consider again the example of dependency. All authors I discussed above took a normative stance on dependency: Morris one of rejection and Gibson et al. and Shakespeare one of acknowledgement. However, none of them were able to say much about the variation in how care relationships are experienced, or how we might judge different dependency relationships differently, and on what normative basis. Integrating normative and empirical inquiry can allow for a more fine-grained account of dependency and its different normative dimensions.

To show how, I bring in an example of ethnographic research carried out by several colleagues and myself (Van Der Weele et al. 2019). The study explored how and when people with intellectual disabilities living in group homes experienced dependency in the relations with their assistants, and asked how ‘bad’ experiences could be prevented. We took our initial definition of dependency from care ethics: we assumed that dependency is a precondition of any care relationship (Kittay 1999). This frame helped us regard the group home as a site in which dependency relationships were constantly formed, maintained, and negotiated. However, it did not help us to bring into view how dependency was experienced; since dependency was so ubiquitous, our participants struggled talking about it. Dependency was, as one participant put it, not experienced ‘as dependency’. This also made it difficult for us to assess when dependency was ‘good’ or ‘bad’. We found that dependency only surfaced as an experience for group home residents when tensions entered the care relationship: when care was absent, misplaced, or came up short. Hence, only ‘bad’ experiences were called ‘dependency’. Based on our conversations with residents, we distinguished between three categories of dependency experiences: invisibility, powerlessness, and inequality. This vocabulary is both descriptive (as it springs forth from the lived experience of disabled people) and normative (as it distinguishes ‘good’ from ‘bad’ dependencies). It thus provides a reformulation of care ethical conceptions of dependency, to help separate harmless from more insidious dependency relationships. Moreover, it also allowed us to return practical insights to people with intellectual disabilities and their assistants on how dependency might become problematic in practice and how they might speak about it—without calling all dependency either ‘good’ or ‘inevitable’ or ‘bad’. Our empirical-ethical approach thus enabled the development of a fine-grained normative theory that formed a corrective to our original moral framework and could elucidate (and hopefully improve) everyday practice.

Studying normativity in practice

I argued above that all three styles of ‘doing’ normativity I listed suffered from a ‘separatist’ account of fact and value. One way to address this lacuna is to turn normativity into an object of research, by investigating normativity as it is expressed in practice. Certainly, the cultural approach to disability already scrutinizes normativity in practice as a product of discourse. But broadening our definition of normativity– and the different ways in which it is embedded in social practice—can open up a wider area of research. In this way, studying normativity in practice can also provide counterweight to the rigidity of ‘top-down’ styles of ‘doing’ normativity, by having normativity found in practice confront the theories, principles and concepts we bring to our empirical research.

In empirical ethics, the study of normativity in practice is anchored by the notion that normativity is part and parcel of everyday life: it reveals itself in what we do, believe, aspire to, want, discern, and so on (Molewijk et al. 2004; Pols 2015). In this definition, as Pols (2015, 83) puts it, ‘[n]ormativity refers to the different forms in which the (attempt to do) good appears.’ Studying normativity in this way takes the moral dimensions of everyday life as a starting point. Not only does it thus respond to the epistemological mistake to uphold a dichotomy between facts and values; it also allows us to edge closer towards actual ethical tensions and dilemmas as they shape practices surrounding disability—to everyday moral problems and also to the practical difficulty of dealing with them. This is important, because it is not always clear from the outset what the moral problem in a particular situation might be.

Again, I will illustrate how such an approach may benefit disability studies by bringing in an example studying the ‘problem’ of dependency. First, consider Winance’s (2010) work on disability and care in her ethnographic work of on wheelchairs and other technical aids. Winance’s paper starts from a dissatisfaction with how care and dependency have been conceptualized in disability studies and care ethics. Both, argues Winance, offer a static picture of care, consisting of ‘a relationship of dependency between an active carer and a passive receiver of care’ (2010, 111). Winance draws on her observations of wheelchair users and their relatives trying out different wheelchair models to challenge this picture, showing that care is a collective work, fitting different actors and entities together so they are jointly enabled to do more— ‘to open up new possibilities of action for the person’ (2010, 105). ‘Good’ care, in this picture, is to find an arrangement that works for members of the collective; it is a compromise between, for instance, the needs and capabilities of the wheelchair user, the care assistant, the wheelchair, and their environment. This also means that good care can never be perfect, as it is the result of compromise. Winance arrives at her conclusion by studying the ‘intra-normativity’ of practice: by witnessing how the actors’ preferences and needs are expressed and negotiated in ordinary situations. By tracking normativity, she homes in on the lived experience of everyday moral tensions to arrive at a practical picture of what ‘good’ care can mean in the fitting and attuning of mobility aids.

Second, consider a study conducted by Pols and colleagues (2017) on autonomy and substance use amongst people with intellectual disabilities in the Netherlands. Pols and colleagues observe that people with intellectual disabilities and their support workers frequently disagree about whether or not substance abuse constitutes a ‘problem’. In such cases, the ideal of autonomy dominant in Dutch intellectual disability support creates tensions: support workers might want to intervene to mitigate alcohol or drug addiction to safeguard the well-being of their clients, but doing so would also violate the latter’s autonomy. Pols and colleagues studied how support staff navigate this ethical tension. They found that support workers believe they can only support their clients under conditions of trust. They strive to maintain close proximity to their clients and to aid them in sustaining a wide network of relationships. They thus tap into an implicit ideal of relationality, in which ‘relationships become both the means and the ends in the provision of care for people with learning disability’ (2017, 774). This ideal contrasts sharply with the dominant ideal of autonomy, which would not allow support workers to work on trust as a goal in itself. By uncovering this implicit ideal of relationality, Pols and colleagues can show how care provision driven solely by the ideal of autonomy may lead to insoluble tensions for support workers, and also how support can be enriched by introducing contrasting and complimentary ‘goods’.

From ethical directives to ‘soft suggestions’

The goal of ‘doing’ normativity is to generate normative insights that can actually help to improve practice. But, as I showed above, this is far from straightforward, as researchers are easily torn between giving too much or too little. Normative ethical inquiry tends to look for guidelines, for frameworks, for generalizable insights—for principles that can be applied across a range of situations, people and places. Yet, as many empirical ethicists have argued, such normative conclusions are difficult to realize in concrete practices about which there is nothing general. Not only are general insights difficult to implement in real everyday contexts; the researcher’s outsider view also makes it particularly difficult to account for the complexity in formulating directives for a practice in which this researcher plays no or no enduring part. At the same time, eschewing the challenge of formulating ethical directives altogether goes against the desire to improve practice. Pols (2021) has spoken of ‘soft suggestions’ as a more realistic and also more desirable outcome of empirical-ethical research. Soft suggestions are not generalizable insights. Rather, they are proposals for tinkering with and improving specific practices, emerging out of studying those practices they are meant to improve, and developed in conversation with those who are meant to implement them. The goal of ‘doing’ normativity thus shifts from providing rules to offering ideas to experiment and tinker with in practice (see also Pols 2008).

Recall again the literature on dependency I discussed above. All authors struggled to formulate concrete ideas that would address problems around dependency in all their nuance and complexity. They either gave too much (by providing rather generic visions on how dependency ought to be seen and dealt with) or too little (by failing to specify how or why some forms of dependency may be ‘harmful’). Now consider the empirical-ethical projects I have described. In each case, the objective was not to come up with guidelines that could henceforth direct practice. Rather, these projects sought to develop new vocabularies or a fresh perspective, by making explicit what had already been dormant goods governing practice. These vocabularies could then be offered to the research participants for consideration: soft suggestions that might help them in changing their habits and practices as they see fit. In this way, the empirical-ethical approach can create fine-grained normative insights both easily adoptable in practice and well-attuned to the lived experience of disabled people—which, in my view, should precisely be the point of ‘doing’ normativity in disability studies.

Conclusion

My aim in this article was to share some insights from empirical ethics that I believe can aid disability studies scholars in ‘doing’ normativity. As I have argued, disability scholars already ‘do’ normativity in a variety of ways, whether explicitly or implicitly. However, these ways do not always lead to normative insights that are sufficiently attuned to the lived experience of disabled people themselves—and that might thus actually help improve their lives. For this reason, disability studies might find much to learn from the discussions taking place amongst empirical ethicists.

Empirical ethics emerged from the field of bioethics, a discipline of which disability researchers have understandably been wary (Scully 2009; Ouellette 2011). Bioethicists, like many philosophers, have tended towards the medicalization of disability, treating it as a bodily anomaly that is best remedied or prevented. In such discussions, the voices of disabled people themselves are seldom heard (Kittay 2009). It is important to remain critical of this medicalizing impulse, even if disability scholars begin to draw inspiration from the empirical-ethical approach. But we must remember that the move towards empirical ethics was driven by a dissatisfaction with traditional philosophical ethics. One reason why empirical ethicists called for context-sensitive normative inquiry that takes lived experience seriously was precisely to counteract what Kittay (2009, 218) calls the ‘empirically inadequate descriptions drawn from stereotypes’ that plague much traditional bioethical theory, including bioethical theory on disability. For this reason, disability scholars, who are dedicated to giving voice to disabled people in their diversity and particularity, might find themselves sympathetic to the empirical-ethical project—and also have much expertise to contribute to it. If, as Garland-Thomson (2017, 325) suggests, disability scholars should strive to engage with bioethics to ‘actually shape policy and practice’, the field of empirical ethics offers a particularly promising partnership for a budding disability bioethics.

Just to be clear: I do not believe that all disability scholars must become empirical ethicists. The point I want to make is a different one. If our research has a normative orientation and aims towards the improvement of practices, we must be conscious of the complexity of ‘doing’ normativity and mind the pitfalls for any attempt to develop normative insights. Here I wholeheartedly agree with Vehmas and Watson: disability studies must face its ‘neglect of the normative’ and find suitable ways of articulating its normative commitments and realizing its normative aspirations (2016, 1). These normative aspirations, I believe, boil down to the pursuit of normative insights that appreciate the nuances and complexity of the lives of disabled people. What I hope to have offered in this article is a series of soft suggestions in achieving this goal: a set of proposals for tinkering and experimenting with ‘doing’ normativity in our research practice.

Acknowledgements

I thank Evelien Tonkens, Carlo Leget, and Femmianne Bredewold for their encouragement and for their incisive criticisms on earlier drafts of this paper.

Disclosure statement

The author declares no conflicts of interest.

Notes

1 A complete discussion of normativity in Foucault and Butler lies beyond the scope of this article. For Butler’s response to some of her critics, see the 1999 introduction of Gender Trouble (1999).