I: Care relations in policy context

Chapter I

Disability and care

Disability and care: Theoretical antagonisms revisited

Beverley Clough

Introduction

This chapter will tackle one of the key debates that has pervaded feminist legal engagements with disability, namely the purported disconnect between care ethics and disability theory. There has historically been a fraught relationship between care ethics and disability studies, as they have been framed in almost antagonistic ways. The concept of care, which lies at the heart of the ethics of care scholarship, has been seen as an infantilising practice and one which is antithetical to the empowerment and independence of people with disabilities.

This antagonistic framing of the concepts will be challenged through a more careful consideration of the theoretical positions and ideas underpinning them. In particular, such a conflictual position will be challenged for falling back into a very narrow, liberal view of both care and independence. Critical disability studies and care ethics literature will be drawn on to show that if we shift our perspective of the legal subject more generally, we can challenge this idea of the separation and “boundedness” of the carer and cared-for and show the shifting subject positions in different contexts. This is a particularly important moment to engage with these approaches more carefully. The UN Convention on the Rights of Persons with Disabilities (CRPD), it will be suggested, may perpetuate a divisive and atomistic framing of the role of rights in the context of care. The critical approach taken here seeks to challenge this and to provide a more careful consideration of disability and care and the relationships of interdependency that are engendered here.

The UNCRPD

The UN Convention on the Rights of Persons with Disabilities (hereafter the CRPD) has been an important expression of and catalyst for disability rights and reignites a number of ongoing debates about the concept of disability, the role of the state and the ways in which meaningful enjoyment of human rights can be facilitate for disabled people. The CRPD is broadly heralded as enabling a paradigm shift in disability rights—an exciting prospect for a group who, whilst ostensibly included in mainstream, universal human rights, have been widely recognised as facing discrimination and disadvantage. Much of the promise of the CRPD is seen to lie in the melding of civil and political rights with social, economic and cultural rights, which is a move away from the more traditional separation of these in previous UN human rights documents. What this means in practice is that the obligations on States Parties to the CRPD encompass active and positive responsibilities in ensuring that rights are facilitated. This is widely welcomed by disability rights scholars and activists and is recognised as shift away from more traditional liberal rights frameworks which are focused on non-interference and a clear public/private divide. Moreover, the CRPD is perceived as being built upon the spirit of the Social Model of Disability which envisages States Parties as actively removing barriers to the inclusion of disabled people in society. In this sense, the CRPD potentially ushers in a distinct and novel approach to justice, and a way to rethink meaningful access to and enjoyment of rights for disabled people. At the same time, there is a high level of disagreement as to how we ought to interpret the Convention, with some of the Articles, such as Article 12, giving rise to fierce debates about the practicality and consistency of the CRPD Committee’s statements on implementation. The actualisation of the CRPD in this regard is crucial, and it is important to be attentive to whether the promises of the paradigm shift do occur.

One area of interest for feminist disability scholars in this regard is around the position of, and recognition of, care in the CRPD. As will be seen later, the care/disability debate has been ongoing for a number of decades now. There are, however, more recent engagements between feminist care ethicists and disability theorists, which suggest that at the heart of both approaches is a challenge to some of the traditional liberal understandings of the legal subject and the role of the state. The CRPD and its challenge to liberal approaches to justice provide an opportunity to engage with these approaches and to be cognisant of the shared concerns of care ethics and critical disability scholars as part of the paradigm shift. Yet, as will be discussed, the lessons from these potentially transformative approaches seem to be being lost in current understandings of, and approaches to the implementation of, the CRPD.

Care ethics and disability theory in development

Core ethics

At the centre of the ethics of care is the privileging of networks of human interdependence, a challenging of the public/private divide, and a focus on the values arising from refocusing on interdependence (Hankivsky, 2004).

The work of Carol Gilligan, In a Different Voice (1982), provided the impetus for the development of ethics of care. Much writing developed in this area after Gilligan’s work. Initially, so-called “first-generation”1 care ethi-cists focused primarily on the distinctions between feminine and masculine morality, and furthermore on distinguishing care ethics from theories of justice. Nel Noddings, for example, in Caring (1984) focused on the idea that care should replace justice as the central concept of morality. Justice was perceived as a product of a masculine system, which was exacerbated by the public/private divide in relation to rights which was seen to propagate the relegation of women’s interests to the private sphere. As Spring (2011) discusses, the feminist critique of rights regards the traditional liberal understanding of rights as overly individualistic, as obfuscating the real political issues and as isolating people from one another. Essentially, first-generation theorists such as Nel Noddings (1984) and SaraRuddick (1989) were concerned with the gendered nature of care and the moral insights to be gleaned from engaging with experiences of care and mothering, as an alternative to the impersonal and abstracted ideas permeating more mainstream, justice-based approaches to morality. This alternative, context-driven and interpersonal understanding of morality, contrasting to the individualism of justice, was at the core of first-generation care ethicists concerns.

Hankivsky, however, points out various limitations of this gender-motivated approach which distanced care ethics from theories of justice. She notes, for example, that there is no empirical link between caring and females, and so there is nothing distinctly feminine about values gleaned from caring Furthermore, she notes that “Essentializing women and caregiving activities, maternal care theorists have been accused of contributing to race, class and ethnicity biases regarding women and not taking into account differences between women” (Hankivsky, 2004, 12). Moreover, a strong critique of the early care theorists is that these accounts of caregiving were narrowly focused on particular care relations, such as motherchild, and sought to overdetermine based on extrapolations from these, ignoring or obscuring the social, political, economic and cultural context (Hankivsky, 2004; Tronto, 1993). This lack of sociopolitical edge can be seen as both essentialising care-relations and limiting the potential for critique and broader change.

As care ethics has moved on, there has been a renewed focus from second-generation theorists on care as a political theory which is free of ties to gender. Clement (1996) notes that “the most recent theoretical discussions of care include the assertion that care is not a superior form of morality and that there are dangers in excluding justice considerations in deliberations about care”. Hankivsky (2004, 14) highlights this shared commitment to finding a meaningful relationship between care and justice. An early attempt at positing a relationship between care and justice was undertaken by Joan Tronto in her 1993 work Moral Boundaries. The focus of this was on care as a political ideal in the context of a democratic, liberal society. Tronto was critical of tying care ethics to feminist theory and instead focused on how care could fit within a liberal society. She discusses the ways in which “even conventional liberal thought will be transformed if we take care seriously” (Tronto, 1993, xi), and introduces the values of attentiveness, responsiveness, responsibility and competence to inform care policy (1993, 127). She distinguishes her approach from those preceding her by insisting that “we cannot understand an ethic of care until we place such an ethic in its full moral and political context” (1993, 125). She further argues that,

In claiming that to care adequately is a quality of the morally good person or society, I am not asserting that a person or society that only provided for care would then be automatically adjudged moral. This injunction to care is not meant to serve as a total account of morality. It is not meant to overthrow such moral precepts as do not lie, do not break promises, avoid harm to others. Keeping to all of those other moral precepts, though, still leaves an account of morality that is incomplete because it ignores the central role of caring in human life.

(Tronto, 1993, 126)

This is an important development for care ethics as it reaffirms the incompleteness of theories of morality and justice which ignore the interdependence of people and the care which is necessary for the development of human beings. In a similar vein, Robinson argues that “the transform-atory potential of an ethics focus extends beyond the personal to the political, and ultimately, to the global context of social life” (Robinson, 1999, 23). Sevenhuijsen’s (1998) more social policy-oriented discussion of care ethics in Citizenship and the Ethics of Care demonstrates further that traditional political and ethical frameworks tend to actively hide and invisibilise many important interpersonal and relational tensions and contradictions, and that care theory can both recognise these and provide tools for engaging with them as part of deliberation. In his work, The Heart of Justice: Care Ethics and Political Theory (2007), Engster builds upon Tronto’s work in providing a robust theory of care focused on moral and political principles of justice. Engster views care not just as a moral obligation but moreover as a state obligation, thus positing his theory as primarily political in a similar way to Tronto. Reconceptualising the distinctions between public and private thus allows more targeted scrutiny at a policy level of obstacles to caring practices. Rather than relegating issues arising in the “domestic sphere” to the realms of private individuals, and outside of the scope of the state, reconceptualising this private/public divide presents such issues as a matter of societal and political importance.

Presenting care as a political rather than a private issue differentiates firstand second-generation care ethicists. In doing so, and in actively highlighting the interpersonal nature of care relations, it potentially allows the needs of both carers and cared-for to be more seriously debated and presented in legal and policy discussions.

Disability rights

A parallel development to feminist care ethics was the disabled people’s movement and advocacy of the rights of disabled people. A central tenet of this initially was the Social Model of Disability. This approach holds that much of the disadvantage experienced by those with disabilities or impairment is socially imposed rather than pertaining to their bodily or mental state. In its early form, the central ideas of the social model were presented in this statement in the United Kingdom of the Union of the Physically Impaired Against Segregation,

It is society which disables physically impaired people. Disability is something imposed on top of our impairments by the way we are unnecessarily isolated and excluded from full participation in society.

(UPIAS and The Disability Alliance, 1975)

Such a view contrasts to the medical model that has broadly been dominant in law, which sees “diagnosis and classification functioning as ends” (Shogren, 2013, 133). Disability, viewed from this perspective, is simply an “unfortunate state of functioning and being” (Vehmas, 2004, 209) with a resultant focus on biological cure or management of the condition or person. In essence, the core of the social model, in its original formulation, is that societal structures and institutions, rather than impairments, cause disability (Oliver, 1991, 1996) and potentially lead to a “social and moral marginalisation of people with impairments and gives permission to debar them from full participation in society” (Vehmas, 2004, 210). Like the ethic of care discussed earlier, this presents an approach which sees individuals as relationally situated and is attentive to the impact that society and relationships can have upon abilities. At the same time, however, there has been considerable discord between care ethics and the disabled peoples’ movement, as will be discussed later.

As with care ethics, it is perhaps difficult to distil all of the various perspectives on disability and the social model, given the different geographical and disciplinary iterations of it. Moreover, similarly to the development of care theory, the social model approach has been subject to criticism, debate and refinement both from within the social model itself and also from external perspectives. Writers such as Shakespeare and Watson (2002), Crow (1996) and Morris (1991, 1996) have emphasised the need to bring the body back to social approaches to disability and frame a more refined and inclusive approach which considers and builds responses to disability at a variety of levels such as physical, psychological, societal, political and cultural (Shakespeare and Watson, 2002, 28). There was a perception that the focus on disability, and the dichotomy between impairment and disability which was central to the Social Model (i.e. it is not impairment that causes disability; disability is caused by societal barriers), ignored the embodied effects and experience of impairment and marginalised engagement with this (Thomas, 1999). Moreover, Shakespeare and Watson (2002) drew attention to the fact that the category of “impairment” in and of itself is already interpellated with medicalised notions of deficit, further challenging the neat impairment/disability dichotomy. Thus, through such critiques, the simple rallying cry of the Social Model has been complicated and developed, with more attention being given to embodiment and the social, political, economic and cultural factors which interact in the production of disabling norms and practices.

As noted earlier, the Social Model has been seen as instructive in the disability rights movement and also in the more recent achievements of this movement in the CRPD. For example, in placing significant obligations upon States Parties to actively facilitate rights enjoyment, the CRPD chimes with the Social Model focus on the responsibility of society (including via legal and political mechanisms) to remove barriers to inclusion and participation for disabled people. Activists have long utilised the core ideas of the Social Model to develop a strong disability rights message, and this is particularly salient in its application in the context of the development of the Independent Living Movement. The Independent Living Movement is concerned with challenging institutionalisation policies for disabled people, focusing on finding ways to move out of institutions and into communities. It is in the application of the Social Model in such policy arenas that the conflicts between care theory and disability theory begin to emerge.

Points of conflict

There are clear conceptual affinities between care ethics and the social model of disability, as both engage with experience in a relational way in contrast to the individualistic, social vacuum which has been the caricature of traditional approaches. At the same time there has been considerable debate between both camps as to the dangers of emphasising the needs and rights of one group in society over others.

Before engaging with the precise terms of the debate and points of conflict, it is important to recognise that in some ways, it is the application of the theories in law and policy, rather than necessarily the theoretical positions themselves, which is problematic. In some ways, it might be seen as a political necessity to frame awareness-raising campaigns in terms which privilege particular groups. However, as will be discussed, it is important that in seeking to give effect to the transformative potential of these approaches, we do not reinforce the problematic background conditions which are their central target of critique.

In essence, the distinction between the theories was seen as one of a point of emphasis; where care ethics was seen as emphasising the needs of carers, the disabled people’s movement buoyed by the social model of disability was concerned with the needs of “care-recipients”. The engagement with care at a policy level, particularly in the British policy context, has been around highlighting the often hidden role that carers play in society as well as the ways in which their interests are overlooked. Moreover, this lack of recognition has been translated into a lack of support for carers (financial and institutional), which is particularly problematic in contexts in which carers face challenging circumstances. Feminist care theorists often aligned these arguments with more familiar debates about the gendered nature of care and the burdens placed on women to undertake caring responsibilities and social reproduction, and the relegation of these concerns in policy to the “private” or domestic domain. One example of this can be seen in the context of community care policies in the 1980’s where the primary policy driver was deinstitutionalisation. As Fine and Glendinning (2005) discuss, “feminist scholars argued that as the burden of caring in the home falls on women, community care policies needed to be understood as regressive and patriarchal, effectively transferring responsibility from the state to the family and, within the family, to women”. Underlying this then was a concern about privatising—or further embedding care relations—in the private sphere and abnegating state and societal responsibility. There was a fear that deinstitutionalisation would thus place further burdens upon (primarily) women to undertake care with little support or recognition.

It is not difficult to see how this stance may jar with the Independent Living Movement and the Social Model perspective underpinning it. As noted earlier, one of the core principles of the Independent Living Movement is the need to move disabled people out of institutions and to remove the barriers to their full inclusion and participation in communities. Essentially, it is about enabling meaningful independence, choice and control over everyday life and decisions, with personal autonomy being seen as the central imperative. Deinstitutionalisation—in theory if not in practice—ought then to be seen as an important goal for the Independent Living Movement. As such, the resistance to the deinstitutionalisation policies among some feminist care theorists was heavily criticised by disability activists. At one level, the debate was seen to reinforce the idea of disability as a burden and the vision of disabled people as dependent upon care. As Watson et al (2004, 335) discuss, the concept of “care” came to be viewed by many in the disabled people’s movement as a “byword for dependency” and instead there was a preference for the idea of “personal assistance” to connote empowerment and liberation. Dependency thus became seen as a problematic and negative concept, as entrenching oppressive care regimes and forced interventions based on paternalistic ideas of deficit and inability. Care was similarly rejected as a concept, reinforcing disability as an individual problem that the carer could then “fix” rather than recognising the societal barriers to community and social participation. The image of simply moving disabled people from institutions into the domestic sphere, which was seen to pervade the care arguments, perpetuates this negative idea and reinforces the rendering of disabled people as passive objects, running counter to the Social Model. Moreover, through this lens care is seen as a problematic exercise of power over the disabled person, and as potentially stifling, overbearing and a barrier to inclusion. In this context then, the growth in support for policies such as Personal Budgets and Direct Payments, which place the disabled person in a role as akin to employer, demonstrates the need for a rebalancing of power. There was also perceived to be an overlooking of the potential for abuse in care relationships by care theorists who tended to portray care as a benign activity. Instead, the need for independence, choice and control was advocated for by the disabled people’s movement, as opposed to the recognition of dependence and interdependence which ran at the heart of the ethics of care. As Jenny Morris (1997) starkly argued, “The only way to empower people is to throw off the ideology of caring which is a form of oppression and an expression of prejudice”. Developing this point further, Morris suggests that whilst empowerment is about choice and control, care conversely is about taking responsibility for somebody, rather than caring about (1997, 54) and that you cannot have both care and empowerment.

Thus, it is evident that there has been a critical rejection of care theory in the disability rights literature. In contrast to the care ethics focus on revaluing dependence and relationality, the disability rights literature focused instead on empowerment through policies enabling independence, choice and control. As will be discussed in the next section, however, this dichotomous view of care and disability approaches is apt to be overstated, and there are good reasons to productively engage with convergences in their conceptual underpinnings. As will be seen, it is perhaps the policy and political context which has necessitated the distinct and seemingly antithetical focus of the care and disability movements, rather than the theoretical underpinnings themselves. Yet, more carefully considering the insights from these theories enables a broader challenge to the political context—and background approach to justice—and prevents the reinforcement of the problematic norms which both approaches seek to distance themselves from.

Reorienting the debate

Interdependence

The dichotomised position that has stemmed from these debates tends to oversimplify the insights that care theorists have been arguing for, and this section will highlight where there are important convergences between the relationality underpinning care theory and disability studies. One of the core foundations for care ethics is the recognition of interdependence and the universality of this across human existence. This is part of the central challenge to the liberal faming of the self and the role of the state which unites the diverse body of work written under the umbrella of care theory. Relationality, rather than independence (in the vein of rugged individualism), is the starting point. The relationality at the centre of care ethics calls for recognition of the contextual realities and interdependencies facing all individuals as a starting point and the ways in which choice and agency are always mediated by this.

There is indeed a legitimate concern that a care theory which emphasises the burdens of care can present the disabled person as the source of this burden (Herring, 2014). At the same time, the language of “independence, choice and control” which permeates much of the disability rights debates can be criticised as simply reversing the concerns of the disabled people’s movement and reflecting it back onto carers—as entrenching the individualistic dichotomy that was the target of criticism. However, as noted earlier, there is also a sense in which the disability rights position in the Independent Living Movement similarly challenges the individualistic rendering of independence. In the National Centre for Independent Living (NCIL) definition of independence, we see the emphasis on meaningful choice rather than endorsing a narrow view of independence as self-determination and actualisation.

Independent living for disabled people means being able to live in the way you choose, with people you choose. It means having choices about who helps you and the ways they help. It is not necessarily about doing things for yourself, it is about having control over your day to day life.

(NCIL)

Yet, in the policy articulations of the core principles of the Independent Living Movement, such as independence, choice and control, there is a sense in which this more relational definition has not been actualised, and instead, independence has become a by-word for self-actualisation and responsibilisation. Carers can become seen simply as sources of assistance based on demand, carrying consumerist connotations. This is particularly evident in the actualisation of Direct Payments schemes in which the relationship becomes that of employer-employee, with all the bureaucratisation and privatisation of responsibility that stems from this (see the chapter by Rummery in this collection for further discussion of this). As Hughes et al (2005) contend, this is a “wrong-headed strategy”. It “does not adequately observe the role of interpersonal relations between parties involved in the caring nexus” (Watson et al, 339). Similarly, as Herring (2014) suggests, such an approach reinforces the idea of separation rather than interdependence and relationship. Instead, calls have been made for a bridging of such approaches, based on mutual recognition, need and embodiment. A similar point has been argued by Williams (2001), maintaining that a political ethics of care is required in order to reconsider interdependence as the basis of human interaction; at different times, in different places and different ways, we all need to be cared for.

However, criticism has been levelled here that the idea of interdependence and reciprocity advocated by the ethics of care does not fully reflect the experiences of those needing care. As Shakespeare (2006, 146) points out, “[t]here is a major difference in degree between interdependence of non-disabled people, and the forced dependence of some people with impairments”. This is quite right and illustrates the reality that whilst all those within society are in the main interdependent, those with long-term impairments or disability are often more dependent, or at least may have dependencies of a different nature or intensity. However, this is not an insurmountable criticism of care theory. In fact, the ethics of care is in a better position than less contextual theories to appreciate this. Whilst it is true that those in need of care may be more dependent than others within a particular caring relationship, at a given time, this should not take away from the fact that carers rely on those that they care for too. Positions in the care relationship are not set in stone and the ability of care ethics to recognise and more importantly to respond to this is notable.

Shifting subjectivity

One of the key insights from the ethics of care is that care is a process and not an identity. Care ethics does not valorise “carers”; rather, it draws attention to the care processes which we are all reliant on in different spaces and temporalities. As such, identities of care-giver and care-receiver are avoided, through the recognition of the shifting subjectivity which is dependent on context. As Williams has argued, and as has occurred in the carer vs. disability rights debates discussed previously, policies often “freeze” identities, and reinforce the discourse of dependence vs. independence, thus forcing individuals to align with a particular group to access particular services (Williams, 2012; Barnes et al, 2015). Being attentive to the various care processes which occur, and the multilateral rather than unilateral ways in which these occur, avoids this problematic framing and draws attentionto the intersecting interests of different parties to relationships. Moreover, as Ward (2011) has discussed, there is increasing recognition of the growing number of carers who are themselves disabled. Through exposing this, Ward (2011, 172) suggests that we can see care as an activity “that binds us all... to undermine the binaries of disabled and non-disabled, carer and cared for, dependent and independent”. Challenging the “othering” that occurs through this binary, and the resulting denigration of the concept of care and dependence, Ward argues,

using an ethic of care analysis to critique this perspective, and to highlight aspects of interdependence (rather than autonomy) and reciprocity, disrupts the discourse that creates such binaries and the drivers that compartmentalise and essentialise people either as care givers or care receivers; it provides a space in which to demonstrate interdependence and to unmask the artificial boundaries of care.

(2011, 173)

One issue which is less often discussed in this literature is whether this notion of interdependence and the critical insights flowing from it for care ethics has application beyond the “informal” care or family context. It is here that perhaps the more innovative or transformative potential of this rearticulation resides. Rather than drawing static boundaries around particular identities (i.e. family or informal carer in contrast to paid or formal care relations), this approach instead recognises the multiple actors involved in care-giving relations, beyond simply the interpersonal. It recognises the different processes which feed into each other as part of care practices over time. These processes equally impact those who are traditionally seen as informal carers as well as those who are more formally recognised and paid. Yet, what this approach does necessitate attention to is the positioning of the particular subject within such processes. Of course, these differential subject positions will call attention to different processes or facets of relations and care practices, and the power dynamics which have been structured by broader relations and processes will be different. To overlook this differential positioning would be to overlook the embodied experiences of care. Similarly, in rethinking and reconfiguring responses, these must also be augmented to the particular context and must not overlook this differential positioning.

Furthermore, the fact of inequality of power within relationships should not be taken as an argument against care ethics generally or recognition of interdependency more particularly. Instead, it creates an argument for care ethics to inform questions of justice, so that those within the relationship are not exploited or negatively affected by certain practices and processes. The sense of difference highlighted in Shakespeare’s quote earlier points to the necessity for a more context-sensitive response, which can account for the contextual and temporal positioning of individuals within certain relations (and, as will be discussed later, these relations are not just interpersonal). The principles highlighted by Tronto (1993), and later developed by Engster (responsibility, competence, responsiveness and attentiveness), apply to the processes taking place within caring relationships, not just the interests of carer or the cared-for. Rather than being a criticism of care theory, this is something which care theory can respond to in a much more nuanced way than other political theories. Simply employing an individualistic rights theory of justice, for example, which emphasises the importance of the human rights of those requiring care vis-a-vis those who are carers, leaves the contextual issues pertaining to the processes of the relationship undetected, and can prevent a more nuanced approach to the interdependence and interconnectedness of those whose rights are presented as in conflict. An ethic of care instead allows recognition of the realities of caring relations, including the potential for significant burdens for care-givers, and the potential for oppression due to the power imbalances, and responds to them.

Webs of relations: beyond the dyad

A further crucial point which is often overlooked in the dichotomising care vs. disability debates is that the relationality being advocated, and the recognition of the ubiquitous nature of care and interdependency, goes beyond the dyadic portrayal of relationships and extends to much broader, intermingled webs of relations—between individuals but also placing these within wider relations with others, with institutions and the state. Tronto (1993, 103), in her argument for the need for a political ethic of care concerned with going beyond the domestic sphere, draws attention to the “interweaving, complex web of care”. This goes some way to avoiding the tendencies in some of the early care theory, and which seems to have carried through in some critiques of ethics of care, to “romanticize care as a sentiment or dispositional trait, and reveals the breadth of caring activities as globally intertwined with virtually all aspects of life” (Klaver et al, 2014, 759) As well as exposing the universality of interdependence and our relations with broader social institutions and structures, this approach to care helps to envisage the intermingled relations between individuals in a caring relationship and how these are equally shaped by (and come to shape) relations with different services and institutions. Focusing simply on the dyad—on seeing care as simply a relation between two individuals— misses out the complexity of these wider relations and the tangible impact they have on the interpersonal care process.

The work of the philosopher Eva Kittay has been recognised as reconciling some of the concerns which have pervaded the debates around care ethics and disability rights. Whilst much of Kittay’s work advances the debate, there is a sense in which it is haunted by both a static approach to carer and care-receiver identities and by a fixation on the dyad. One of the cornerstones of Kittay’s (2001, 565) argument is the idea of derivative dependency which she claims occurs in care-givers through their turning their time, attention and efforts to caring for another. As well as reinforcing the idea of carer and care-receiver as fixed positions, this notion is also problematic in overlooking the pre-existing dependencies that the person occupying the carer position already has upon societal institutions, and problematically locates those being in need of care at a given time as the source or conduit of the dependency. This is exacerbated further by Kittay’s idea of “nested obligations” which, building on the idea of derivate dependency, creates an argument for the provision of resources to enable the carer to care for the person receiving care. This positioning of care-giver and receiver becomes hierarchical and unidirectional, with the person in need of care seemingly disconnected from the societal and institutional network which Kittay argues ought to be responding to the derivative dependency of the care-giver. As Back (2015) has argued, this hierarchical positioning within this concept of “nested dependencies” also overlooks the civic or political membership of the disabled person, problematically hinging it upon their carer or family member. Moreover, such an approach seems to suggest that the care relationship itself is pre-political and that, out with this relationship, the care-giver may function free of dependence.

As such, focusing on the interweaving webs of care that all individuals are embedded within and avoiding the dyadic focus which locks individuals into particular subject positions provides a means through which to avoid the problematic inferences which stem from Kittay’s framing. One particularly important insight which flows from the recognition of interweaving webs or networks of care processes relates to responsibility. Responsibility is an aspect which Morris (1997, 54) has previously discussed as troublesome from a disability perspective, arguing that “care” in policy becomes synonymous with “taking responsibility for someone” rather than “caring about” them. This, Morris (1997) suggests, results in potentially oppressive care arrangements as carers become the dominant or controlling party. However, the ethics of care, and more specifically a political ethics of care grounded in networks of care, provides a more complex approach to responsibility which avoids this framing. As Barnes et al (2015) point out, “[c]entral to a political ethic of care is the question of responsibility” (emphasis added). This centrality of responsibility is important as it draws attention to the various different agents and actors involved in what has otherwise been framed as a dyadic care relationship, and in focusing on their role in particular processes, complicates the concept of responsibility and the tendency to ascribe this to individuals. It brings to the fore the broader societal and institutional processes involved in shaping the care relationship and the options available to those situated within it. Moreover, and perhaps more importantly, as well as drawing attention to these factors, Lawson (2007, 1) notes that “it also moves us beyond critique and towards the construction of new forms of relationships, institutions, and action that enhance mutuality and well-being”.

This point is particularly salient for considering the social, legal and political responses to care and the various forms that these may take. Rather than individualising the responses based upon a static identity of carer or disabled person, there can be a greater focus on changes at a number of different levels and in different policy processes. One area where this lens is key is in relation to the potential for abuse in caring relationships. As noted previously, there has been vociferous criticism of care ethics, from disability rights activists and from broader theoretical scholarship, suggesting that it valorises care at all costs, and can support what would otherwise be viewed as oppressive or abusive relationships. Cooper (2007), for example, discusses how the ethics of care idealises care through romanticising it. Disability scholars similarly have argued that in viewing care as an always positive practice, the elements of control and abuse may be overlooked. Kittay’s work, some of which has been previously discussed earlier, has also been critiqued on the basis that it has a tendency to romanticise or idealise care relationships, yet this has been on the basis that it ignores the abuse that care-givers can experience at the hands of those they are caring for. Simplician (2015), for example, recognises that in Kittay’s account of caring for her daughter Sesha, the “vulnerability” of her daughter is essentially frozen as an identity, with the carer seen as more powerful and, by extension, less vulnerable. As Simplician goes on to argue,

An unintentional consequence, however, is that Kittay’s emphasis on permanent vulnerability forecloses the possibility that dependents can be both vulnerable and aggressive. This foreclosure silences experiences of violence and leaves us unequipped to respond to abuse.

(2015,219)

Building on the idea of identities and subjectivity as fluid and shifting, rather than frozen, as well as recognising the wider webs of relations shaping the processes of care, enables a more careful understanding of abuse and responses to it. This lens opens up the space to recognise and respond to the particularities of a given relationship and to consider the various processes which have shaped the relationship in such a way. For example, it may be that certain policies which shift responsibility (and accountability) from the state to the individual might exacerbate powerlessness or a lack of support to those in care relationships. Whilst the axes of power are always present and power imbalances are almost certain to pervade most care relations (viewed both interpersonally and as broader networks), a more relational approach informed by a political ethic of care helps to attend to the particularities of how these power relations are formed, sedimented and perpetuated and how they are experienced in relationship. This also enables responses which are attentive to such particularities and which do not necessarily need to be targeted at the individual level. Moreover, abusive, exploitative or harmful “care” is the very antithesis of the practices which care ethics seeks to engender, given that it is cannot, by definition, be attentive, responsive or competent. Care ethics analysis pinpoints and recognises precisely these problems with what are otherwise viewed, through the current lens, as “caring” relationships.

As this section has outlined, there are a number of problems with the dichotomised framing of debates around care and disability theory. Whilst it is important to recognise that this framing is a political necessity and has been shaped by the policy context in which it has emerged, there is also a sense in which the debate inadvertently then perpetuates and reinscribes the very problems which are at the heart of both disability theory and care theory, including the dominance of a liberal, individualistic ideal and the public/private divide in the rendering of the state and its limits. Instead, highlighting the universality of interdependence, the shifting nature of subjectivity and of the various webs of relations in which we are all entangled can align the insights from the respective theoretical positions in order to reconfigure debates around responsibility and responses.

Notes of caution: implications for the UNCRPD

As discussed at the outset of the chapter, the CRPD has been widely welcomed as potentially transforming disability rights and approaches to justice. However, there is a sense in which the CRPD may perpetuate some of the problematic, dichotomising terms of the debate around care and disability. In particular, it is in the realm of carers’ interests that the CRPD may pose a real danger to realising this relational endeavour.

The CRPD does refer to family members or carers of persons with disability (see e.g. Preamble, Art 16, Art 23(4) and 28(1)); however, when it does so, they are essentially placed as the means by which the human rights of the person with disability can be achieved—there is no support given to facilitating the carers interests as an end in itself, nor focusing on the caring relationship as a whole. The Preamble, for example, states that,

the family is the natural and fundamental group unit of society and is entitled to protection by society and the state, and that persons with disabilities and their family members should receive the necessary protection and assistance to enable families to contribute towards the full and equal enjoyment of the rights of persons with disabilities.

Whilst on the face of it, this statement appears to lend support to a relational ideal of recognising the interests of all of those within a caring relationship, a closer reading reveals that the underpinning logics underpinning support provided to families is to enable them to contribute to the enjoyment of rights of persons with disabilities—see the emphasis added, for example. The family member is positioned as primarily instrumental. This logic could be incredibly problematic for families, particularly given how intertwined the interests of family members will be upon the support provided by the state. Moreover, the discussion here seems to completely side-line broader care relations and the context feeding into family care relations, as well as remaining silent on whether we can conceptualise more formal care or support relations in the same way. We see again a problematic freezing of identity, and tendency to “nest” dependency in the family, potentially reinforcing the public/private divide which has long attracted feminist legal criticism. As Kayess and French (2008) discuss, in drafting the Convention, the Ad Hoc Committee had keenly argued about whether the interests of family members ought to be included. This was answered in the negative,

on the basis that in most societies family needs and rights tend to be privileged above those of persons with disabilities and, notwithstanding the enormous importance and contribution of families to the realisation of rights and dignity of person with disability, it is sometimes family members who are principally responsible for, or collude in, human rights violations against them.

(2008, 25)

Whilst this may not completely overlook the role of family members as carers, and does not foreclose considering them in a distinct treaty, it does perpetuate the idea of separate interests and static identifies and subjectivity. As has been argued earlier, whilst a relational ethic of care must be cognisant of the “dark side of care” and the very real possibility of abusive relationships (Herring, 2014; Held, 2010), this is an unhelpful and outmoded dichotomisation of the interests of those within caring relationships. The much-lauded relational face of the CRPD, decipherable through the emphasis on positive obligations and the interrelationship between social, economic and cultural rights and civil and political rights, is distinctly absent in this context. This presents a disappointing and also politically dangerous obstacle to engendering caring relationships which enable the facilitation of the rights of all those within it. Instead, a particularly “thin” conceptualisation of rights and autonomy is employed in this regard, which is antithetical to the idea that the CRPD ushers in new ways of thinking about justice through revision of traditional concepts. Here, instead, we are faced with a divisive and atomistic presentation of the role of rights in the context of caring relationships. There is steady recognition of this issue in the literature. This is an area of the CRPD that requires further research and debate to ensure that the potential gains of the Convention translate into implementation in ways which are consistent with a relationally and contextually focused approach to justice.

Acknowledgements

Many thanks to Professor Anna Lawson and Professor Luke Clements for their excellent and incisive feedback on early drafts of this chapter, and to attendees at the Disability, Care and Family Law Workshop at Oxford University on 25th June 2018, generously funded by the Oxford Law Faculty.

Note

1 To use a term coined bv Hankivsky in “Social Policy and the Ethic of Care”, Ibid.

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