The Mental Capacity Act 2005

In the context of adult social care and health care, the Mental Capacity Act 2005 (MCA) draws the parameters of legitimate legal intervention in relation to adults deemed to lack mental capacity. Thus, the distinction between mental capacity and incapacity is crucial. In essence, if an adult is deemed to have mental capacity to make a particular decision, then that decision cannot be interfered with – it is seen as a manifestation of the individual's choice and self-determination, and, as such, worthy of respect as an autonomous decision. Conversely, if an individual is deemed to lack mental capacity in relation to the particular decision, then it is deemed to not be an autonomous decision worthy of such respect, and a substitute decision can be made by another in their ‘best interests’.

The Act governs a wide range of decisions, from the minutiae of day-to-day decisions such as what to eat, what to wear and where to go, to medical treatment decisions, residence decisions, decisions as to contact with particular individuals, marriage and capacity to consent to sex. One of the key principles guiding the Act is the presumption of mental capacity (MCA, s1), which means that everyone is assumed to have mental capacity to make a decision, unless it can be proved that they lack capacity. Section 2 outlines the diagnostic element of mental capacity, outlining how ‘a person lacks capacity in relation to a matter if at the material time he is unable to make a decision for himself in relation to the matter because of an impairment of, or a disturbance in the functioning of, the mind or brain’. Section 3 of the Act goes on to define what is meant by ‘unable to make a decision’ and, if a finding of incapacity is made, the Act further lays out that decisions must be made for that individual in their ‘best interests’ (MCA, s4).

At the core of a capacity assessment is the ‘causal nexus’ between the impairment of, or disturbance in the functioning of, the mind or brain, and the inability to understand, retain, use or weigh information or communicate the decision. Essentially, if there is no cognitive impairment present, then capacity will not be called into question. Likewise, even if there is an impairment present, the individual will be deemed to have capacity if it cannot be shown that it is that impairment which is causing the inability to understand, use, weigh or communicate information. The result of this assessment of mental capacity is crucial; if an individual is deemed to have capacity, then their decision will be respected and will be deemed to be autonomous. On the other hand, if they are deemed to lack mental capacity, then a decision can be taken for them provided that it is in their best interests. The problematic nature of this stark binary was recognised by the House of Lords Select Committee (2014) in their post-legislative scrutiny of the statute, noting among other things that:

This has been echoed in the findings of a number of Serious Case Reviews in the past, including those related to Steven Hoskin and Gemma Hayter, which have been set up to see what lessons can be learnt following the murders of individuals who have been known to adult health or social care services (see, for example, Flynn, Reference Flynn2007; McAteer, Reference McAteer2011). In relation to Steven Hoskin, disengagement with services had been respected as his ‘choice’, which is an aspect that faced heavy criticism. Whilst the presumption of capacity underpinning the MCA noted above was seen as positive in terms of preventing widespread and unrestrained interventions into people's decisions, it can prove to be problematic in practice (Keywood, Reference Keywood2010: 109). Because Steven was presumed to have mental capacity, this was perceived as a barrier to service engagement, as this would ostensibly go against his expressed wishes. The concept of mental capacity in these cases artificially constructs the individual deemed to have mental capacity as being autonomous. The creation of this stark binary perpetuates the ‘othering’ of those deemed to lack capacity, and justifies differential legal treatment. Those who do not fit neatly into this constructed binary fall outside of the margins.

Similar issues with the stark binary are demonstrated in the case law in the Court of Protection, which makes decisions on financial and welfare matters for people deemed to lack capacity, as well as making declarations as to capacity and best interests. Herring and Wall outline some of the problematic case law in which this binary plays out, particularly in the context of capacity to consent to sex, consent to contact and consent to residence (Herring and Wall, Reference Herring and Wall2015; Herring, Reference Herring2016). Such cases pose difficulties for the MCA as they involve complex issues of interpersonal relationships that trouble the decision-specific, functional test for capacity, which tends to be abstract and side-lines the situational context of decision making (also see Clough, Reference Clough2014).

One such case, PC & Anor v. City of York Council [2013] EWCA Civ 478 demonstrates this well. The case involved the core issue of whether PC had capacity to decide whether to live with her husband upon his release from imprisonment for serious sexual offences. PC had mild learning disabilities and had married PC whilst he was in prison. It was found that as she had had the capacity to marry she must now be taken to have capacity to decide to perform the terms of the marriage contract. As such, PC was held to have mental capacity to decide on whether to reside with her husband. Lewison LJ summed up the position thus:

In IM v. LM & Others [2014] EWCA Civ 37 questions arose as to LM's capacity in relation to contact with her partner AB, and also her capacity to consent to sex with him. This was against a background of ‘aggressive’ behavior and possible abuse.

In the Court of Appeal, it was held that LM did have capacity to consent to sex with her partner. Embedded in the judgement and similar cases on consent to sex are allusions to pragmatic concerns and the limitations of the MCA in encapsulating the reality of decision making (para. 77). Decision-making of this nature involves complex, separate decisions which interconnect over indefinite periods of time, the nature of which the MCA may struggle to capture. Autonomy also played a significant part in the reasoning:

Whilst seductively simple reasoning, this is not without criticism (see Clough, Reference Clough2014; Herring, Reference Herring2016). Derbyshire CC v. AC [2014] EWCOP 38, demonstrates the continuing dissatisfaction with this approach. Here, Cobb J discusses the statement of the medical expert, that AC, ‘said that even if she did not want sex she would have to go along with it as she wants to be “lovey dovey”’ (para. 33). Cobb J expressed his unease with this and the way that the test for capacity to consent to sex does not include this exercise of choice within its scope (para. 36).

Concerns such as those highlighted here have led to calls for a more responsive legal framework that recognises that a richer, more nuanced understanding of autonomy is necessary if we are advocating for meaningful opportunities for the expression of choice and control over our lives. Hinging this on concepts such as mental capacity works to internalise the perceived vulnerability and link it to the existence of a cognitive impairment, rather than considering the structural and institutional norms that can construct, exacerbate and intensify the experience of vulnerability.

Theorising vulnerability and the ‘problem’ of disability

Engaging with vulnerability theory allows us to problematise and engage with this binary between capacity and incapacity, and to trouble some of the foundational legal and policy norms that underpin it. As will be seen, this in turn calls for us to consider the adequacy of the responses enabled under the current legal framework, and importantly to reflect outwards on the implications of this analysis for broader legal and policy structures. This section will give a brief overview of key literature which has developed our theoretical approach to vulnerability, particularly in the context of legal discourse, and outline how this poses particular salient issues in the context of disability. It will emphasise the way in which the disability critique of vulnerability can conversely be harnessed to strengthen our understanding of universal vulnerability in light of a nuanced, social model understanding by focusing on the interaction between the embodied individual and their contextual situation in relation to institutions, structures and cultural norms. The central point here is that far from reinforcing categories of ‘vulnerable’ groups, the universal understanding of vulnerability as shared ontological experience allows us to begin to dismantle and question the binaries, categories and resultant legal and policy responses currently engendered and perpetuated in law. It helps us to reframe our ontological experience as a shared and often positive interaction between our bodies and our context, including through relations with others and institutions. It also brings to the fore otherwise obscured or hidden institutional or systemic elements which can exacerbate the experience of vulnerability.

A number of theorists are challenging traditional approaches to vulnerability, which saw it as a group or status based concept, linked to an inherent condition such as age or disability, and seeking to situate the concept within understandings of all individuals as interdependent, relational and, as such, universally ontologically. At the forefront of this is the work of Martha Fineman who has sought to re-imagine, at a political level, what we mean by vulnerability (Fineman, Reference Fineman2008). Central to Fineman's thesis is the notion of ontological ‘universal vulnerability’, advancing the idea that all human beings, by the very nature of being social beings, are vulnerable. Whilst an understanding of universal vulnerability may seem to gloss over the individual embodied experience of vulnerability (Mackenzie et al., Reference Mackenzie, Rogers and Dodds2014: 16), theorists emphasise that the particular experience of vulnerability must be understood at the individual level (Fineman, Reference Fineman2010). Fineman refers to this as ‘embodied difference’, stressing that the ‘experience of vulnerability varies according to the quality and quantity of resources we possess or can command’ (Fineman, Reference Fineman2010: 21).

The ‘responsive state’ is a key normative aspect of Fineman's vulnerability thesis, in that an understanding of the various sources of vulnerability forms the basis of a claim that the state must be responsive to these (Fineman, Reference Fineman2010: 13). This signals an important recognition of the role that the state plays in the formation of systemic and institutional sources of vulnerability, and conversely that the state is in a position to ameliorate this and instead foster resilience. Vulnerability again is not seen as an inherent quality that individuals or members of particular groups possess, but instead as an experience constituted by the interaction between an embodied being and their societal context – their lived experience. Mackenzie et al. (Reference Mackenzie, Rogers and Dodds2014) call for a specific focus on sources of vulnerability – inherent, situational and pathogenic – and the way in which the interplay between these sources impacts on embodied experience (Mackenzie et al., Reference Mackenzie, Rogers and Dodds2014: 7). Notably, their category of ‘pathogenic vulnerability’ as a subset of situational factors refers to the way in which abusive interpersonal or social relationships, and socio-political oppression or injustice can expose vulnerability (Mackenzie et al., Reference Mackenzie, Rogers and Dodds2014: 9). Moreover, they note that ‘pathogenic vulnerabilities may also arise when a response intended to ameliorate vulnerability has the paradoxical effect of exacerbating existing vulnerabilities or generating new ones’ (Mackenzie et al., Reference Mackenzie, Rogers and Dodds2014: 9). This is a useful starting point for thinking about the particular experience of vulnerability, in line with Fineman's call for attentiveness to the particular as well as the universal, ubiquitous nature of vulnerability. As will be seen, this is of particular relevance when we consider the framing and application of laws such as the MCA in practice, the legal responses this allows and their actual impact on individual's lived experience.

It is important to consider here the disquiet that is evident in the literature when using a vulnerability frame in the context of disability (Morris, Reference Morris1991, Reference Morris1996; Hollomotz, Reference Hollomotz2009; Roulstone et al., Reference Roulstone, Thomas and Balderston2011). There is a general concern that an increased focus on vulnerability in the context of welfare can invite policies that reinforce notions of acceptable behaviour (Fawcett, Reference Fawcett2009) or of those deemed vulnerable as being passive recipients of care or services (Daniel, Reference Daniel2010). This is reinforced in the context of disability, with commentators such as Hollomotz (Reference Hollomotz2009, Reference Hollomotz2011) expressing concern that framing disabled people as vulnerable can reinforce the powers of professionals and allow people to be subjected to paternalistic or protective actions. Hollomotz empirical work also suggests that protective policies in the context of adults with learning difficulties can increase their vulnerability by preventing the individual from developing their own resilience or coping mechanisms (Hollomotz, Reference Hollomotz2011). Similarly, Dunn et al. argue that in the context of mental capacity, ‘substitute decision making’ based on the idea of vulnerability as situational (perhaps due to an abusive partner being deemed to be dominating a person's decision making ability) may allow courts to step in with actions that are ‘potentially infinite in scope and application’ (Dunn et al., Reference Dunn, Clare and Holland2008: 241) and effect a course of action that is protective. This is further emphasised by Warner who expresses concern that in the context of adult social care, ‘vulnerability’ is often used synonymously with the concept of risk (Dunn et al., Reference Dunn, Clare and Holland2008: 32).

These concerns capture the sense that vulnerability as an indicator in social policy can be dangerous, and may lead to interventions which reinforce power positions, which prevent the ability to develop resilience or personal preventive strategies, and which work to normalise ‘acceptable’ behaviours. However, the contention of this article is that whilst these are certainly valid concerns, this is not a necessary consequence of engaging with vulnerability theory. There is a sense here in which debates are taking place at cross-purposes. The critical vulnerability theory stemming from Fineman and others’ work seeks to challenge precisely these trends in law and policy. As will be discussed below, the idea of universal vulnerability is central to challenging the idea in selective welfare systems that certain groups are vulnerable, and that particular (protective or paternalistic) responses are suited to such groups. This is particularly key in the context of disability and cognitive impairment. Moreover, the focus on pathogenic vulnerability as developed by Mackenzie et al. (Reference Mackenzie, Rogers and Dodds2014) can be seen as capturing and responding to the concerns of Hollomotz (Reference Hollomotz2009) and others who feel that responses to supposed vulnerability may in fact reinforce it. The focus on structures and institutions that is central to vulnerability theory enabled a nuanced and careful analysis of the professional and interpersonal power relations and sees such issues as the locus of concern, rather than the individual – which has important theoretical links with the social model of disability.

The social model of disability 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 UK of the Union of the Physically Impaired Against Segregation (UPIAS):

Such a view contrasts to the medical model that has been dominant in mental health and mental capacity law, which sees ‘diagnosis and classification functioning as ends’ (Shogren, Reference Shogren2013: 133). Disability, viewed from this perspective, is simply an ‘unfortunate state of functioning and being’ (Vehmas, Reference Vehmas2004: 209) with a resultant focus on biological cure or management of the condition or person.

This critical turn in linking the social model understandings of disability to a vulnerability analysis could have profound repercussions in reigniting and strengthening debates and activism here. The social model approach as it was initially conceived – denying a causal link between impairment and disability – has been subject to criticism, debate and refinement both from within the social model itself and also from external perspectives (Barnes and Mercer, Reference Barnes, Mercer, Barnes and Mercer2006; Shakespeare, Reference Shakespeare2014). Writers such as Shakespeare and Watson (Reference Shakespeare and Watson2002), Crow (Reference Crow, Barnes and Mercer1996) and Morris (Reference Morris1991, Reference Morris1996) have emphasised the need to bring the body back into social approaches to disability, and frame a more refined and inclusive approach which considers and builds responses to disability on the basis of a variety of levels such as physical, psychological, societal, political and cultural. There is not scope to fully explore this here, but it is argued that aligning with vulnerability theory, and in particular the idea that as embodied beings we share an ontological vulnerability, allows a more inclusive, embodied, interactive social model to develop (Wishart, Reference Wishart2003; Clough, Reference Clough2015). This approach allows us to move away from ‘struggling’ to ‘fit’ disability into existing discourses of the legal subject and personhood (Erevelles, Reference Erevelles1996). It allows us to construct instead a view of humaneness that begins with our shared ontological interdependencies, and include disability at the outset, echoing the need for ‘philosophical inclusive design’ (Davy, Reference Davy2015).

Challenging the capacity/incapacity binary

This section will focus in particular on what such insights illuminate in the context of the MCA, and in light of the criticisms briefly touched upon in the first section. Two concerns underpin the approach here – one with the idea of a decision being deemed capacitous or incapacitious, and the other being with the legal and policy responses which stem from falling on either side of this divide.

There are many reasons why such a narrow, internally focused approach ought to be a matter for concern. One consequence is that it creates a category of the ‘other’ in drawing a legal dividing line between those who have capacity and those who do not, which justifies a different legal response. As Scully has argued in considering the relationship between vulnerability and disability, disavowal, hostility and scapegoating of disability, ‘reinforced by the conceptual segregation of disabled people into a category marked specially vulnerable, significantly increases the risk that they will be seen as radically other to normative citizens: more dependent, more of a burden, less able to argue for their dependencies to be treated just like the dependencies of everyone else, and more easily jettisoned when times are hard’ (Leach Scully, Reference Leach Scully, Mackenzie, Rogers and Dodds2014: 219).

Such a concern manifests in the context of the MCA where we can see a stark dividing line between those who have a cognitive impairment, who can thus be capable of being deemed to lack capacity, and those without a cognitive impairment, who cannot. In this respect, the Act may be both over- and under-inclusive. It may be over-inclusive in that it wrongly focuses on those with certain cognitive impairments, such as those with learning disabilities or dementia, and stigmatises them through a lens of disability and incapacity. However, the Act may be under-inclusive in that others who are in abusive relationships, or who are subject to oppression and domination, are left outside of the legal purview because their decisions are deemed to be autonomous as they are not tainted by the presence of a cognitive impairment.

The richer understanding of vulnerability as a universal condition of our ontological experience as human beings calls into question this division between those with cognitive impairments and those without. It sees us all as vulnerable to relationships of domination, to structures that discriminate and allow the unequal distribution of resources necessary to enable meaningful choice, and to cultural and political norms which disavow and devalue. At the same time, however, it ought to be noted that our ontological shared vulnerability is also a positive thing – that encourages and in many ways necessitates the forming of relationships of care and support. The idea of universal vulnerability challenges the stark binary line drawn in law between those deemed to have capacity and those deemed to lack it. It calls into question the singling-out of cognitive impairment for differential legal treatment and calls for justification of this. It also obscures the potentially pathogenic sources of vulnerability created or exacerbated by this legal and policy starting point.

One of the reasons why the Mental Capacity Act may have been framed in such a narrow way is due to the pervasive understanding of autonomy premised on non-interference, rooted in the liberal tradition. Interference with individual decision making, from this perspective, is seen as paternalistic and antithetical to respect for autonomy. As such, only in very limited circumstances ought decisions to be questioned in order to avoid unwarranted and unethical interferences with individual liberty. Only those deemed to lack mental capacity can then be subject to paternalistic interference with their decisions, as they lack autonomy. Those deemed to have mental capacity are conversely seen as autonomous, and it is seen as paternalistic and beyond the role of the state to interfere with their decisions. Autonomy and paternalism are thus set up in conflict. Whilst this does not fully address the confining of the Act to those with cognitive impairments, it does signal the ethical and legal distaste for paternalistic intervention in citizen's lives. Indeed, this is a concern expressed in much of the literature, particularly around the concept of vulnerability. Mackenzie et al. (Reference Mackenzie, Rogers and Dodds2014) point out that ‘in responding to vulnerability we need to be very cognizant of the way. . .discourses of vulnerability and protection and the labelling of individuals, groups or whole populations as vulnerable can lead to discrimination, stereotyping and unwanted paternalistic interventions’ (Mackenzie et al., Reference Mackenzie, Rogers and Dodds2014: 16; also see Series, Reference Series2015: 3).

Whilst these are, of course, valid concerns and reflect the way that policies focused on ‘vulnerable’ populations may have worked in the past, this is not a reason to dismiss vulnerability as a concept and revert to the traditional liberal and arguably impoverished concept of autonomy. A particularly salient point is raised by Hall in relation to the systems and structures underpinning mental capacity law, who suggests that whilst capacity is the main locus of evaluation in this context, it is in fact perceived vulnerability that health or social care professionals are responding to. The capacity/incapacity framework, however, constrains the response here and leaves the concern with vulnerability ‘covert – occurring outside of the official margins, unexamined, undefined, and therefore undefended’ (Hall, Reference Hall2012: 85). Hall goes on to suggest that the ‘unspeakable centrality of vulnerability in this context has given rise to the apparent conflict or debate between protection and autonomy that has dominated and distorted the discourse around guardianship for decades. The language of “debate” is, of course, a rhetorical mechanism: in this discourse, ‘protection’ is the rhetorical straw man in opposition to which “autonomy” is, heroically, defined’ (Hall, Reference Hall2012: 85).

Instead, the literature on vulnerability stresses a richer notion of autonomy which steps outside of these theoretical constraints imposed by thinking in terms of autonomy/paternalism, or empowerment/protection. What is often ignored by such criticisms is the way in which the state, through various structures, institutions and norms, does already interfere in our lives. It is often the case that such structures are normalised and thus made invisible. In contrast to the ‘autonomy myth’ (Fineman, Reference Fineman2004), pedalled through the liberal legal subject, this recognition of the already pervasive impact of our social context helps to avoid falling into the trap of seeing any state involvement as necessarily paternalistic. Whilst it may be presented that we are all free and unencumbered, it is inescapable that we are all impacted upon and shaped by social structures, institutions and discourses. What is important, then, is thinking about how these structures are working, and how they are impacting upon particular experiences.

The critical point here is that when the focus is shifted to the interaction of various sources of vulnerability, we can thus hone in on how responses can best be framed to facilitate autonomy in a thicker and more meaningful sense, which may involve access to particular resources, or supports in making decisions. Mackenzie argues that such interventions are in stark contrast to ‘objectionably paternalistic interventions [which] express or perpetuate relationships of domination or inequality among members of a community or between state and citizens’ (Mackenzie, Reference Mackenzie, Mackenzie, Rogers and Dodds2014: 55, also see 47). This invites a much more careful analysis not only of the contextual experience of vulnerability, but of the way in which responses (and included in this is the legal or policy response of doing nothing) may exacerbate this. On the other hand, there is a need to consider the way that ‘doing nothing’ in terms of direct intervention in an individual's life may, at the same time, still potentially require alterations at a structural and institutional level to address particular sources of vulnerability. Our ideas as to what we mean by ‘intervention’ and the levels at which this takes place begin to shift when considered from this perspective. Such a starting point may in turn begin to open up ways to disentangle the linked dichotomy often cited in the context of adult social care between empowerment and protection (Fyson and Kitson, Reference Fyson and Kitson2007).

Reflecting again on the MCA and the legal responses engendered by this, we have seen that if somebody is deemed to lack capacity, then a decision can be made for them by somebody else in their best interests. It is argued that this legal response may create a pathogenic form of vulnerability, in that attempting to ameliorate vulnerability can conversely entrench it. That is to say that rather than necessarily equipping the individual with the means to facilitate their autonomy and meaningful choice, the decision may be taken out of their hands. For example, in A Local Authority v. H [2012] EWHC 49 (COP), H was a twenty-nine-year old woman with mild learning difficulties. The evidence in the case suggested an ‘early and deep degree of sexualisation’ (para. 6), and Hedley J noted that whilst H may have consented to such sexual encounters, these may have been exploitative or unconventional as they involved multiple sexual encounters at a time, much older men, bisexual oral and anal sex and attempted sex with a dog (para. 9). H was deemed to lack capacity for sexual relations because she realised about sexual health but not how to protect herself; she struggled to say no and she did not fully understand the relevant issues. The response of the MCA, in holding her to lack capacity, was to deprive her of her liberty and to control and manage aspects of her life to prevent sexual relationships from occurring. She was subject to ‘1:1 supervision at all times whether in or out of the property and not free to leave the property on any other basis’. Viewed through the critical lens discussed here, we see that this does not foster H's decision making or choices, as decisions are taken out of her hands, actively entrenching her vulnerability. Equally, if an individual is deemed to have mental capacity, either because they do not have a mental disorder, or because a low threshold test of capacity is set as in IM v. LM, then sources of vulnerability are ignored or obscured, and the means of addressing these are similarly discounted in the name of respecting autonomy. This does not make vulnerability disappear, as there is no state of invulnerable (Butler, Reference Butler2004), but it does allow the systems and institutions perpetuating disempowerment to endure.