Madness, Distress and the Politics of Disablement

Spandler, Helen, Anderson, Jill

• Publisher: Policy Press
• Year: 2015
• ISBN:
  9781447328094
• Edition: 1
• Topic: Scienze sociali
• Subtopic: Disabilità in sociologia

This book explores the challenges of applying disability theory and policy, including the social model of disability, to madness and distress. It brings together leading scholars and activists from Europe, North America, Australia and India, to explore the relationship between madness, distress and disability. Whether mental health problems should be viewed as disabilities is a pressing concern, especially since the inclusion of psychosocial disability in the UN Convention on the Rights of Persons with Disabilities. This book will appeal to policy makers, practitioners, activists and academics.

Part One
Disjunctures between disability and madness

ONE

Unreasonable adjustments? Applying disability policy to madness and distress

Helen Spandler and Jill Anderson

The rights of disabled people are now enshrined in law and reflected in policy at national and international levels. As a result, in many countries disabled people can access financial and social care support, through mechanisms like independent living payments. They are also entitled to reasonable adjustments or accommodations, to facilitate their access to education, employment and goods and services. Although the disabled people’s movement still has some way to go to achieve its full demands, and recent advances have been threatened by reduced welfare spending, these measures have been very welcome. However, despite the fact that people with mental health problems are potential beneficiaries of these policy developments, as ‘disabled people’, application in a mental health context has not been straightforward. For example, the demand for ‘reasonable adjustments’ throws up specific challenges in the context of madness and distress.

In this chapter, we identify some tricky issues that may underlie difficulties in putting disability policy in to practice in relation to madness and distress. The first issue is that madness is, by definition, unsettling, especially as it relates to notions of unreason and irrationality. This throws up particular difficulties and challenges which relate to the second issue, the pathologisation of madness. As a result of their perceived unreason/irrationality, people with mental health problems are actively pathologised and socially excluded. In the light of these first two issues, individuals are then faced with a third: the problematic adoption of a ‘mentally ill’ and/or disabled identity. Taken together, these issues present major obstacles for people who experience madness and distress, preventing them from benefiting from wider disability policy.

Some disability activists, particularly advocates of the social model of disability, have been hesitant to discuss the personal difficulties and limitations which may result from an individual’s impairment, and other ‘impairment effects’ (such as pain and discomfort). This arises from a fear of locating the ‘problem’ back with the individual, rather than locating it, where it is seen to belong, in discriminatory social relationships and structures. Similarly, some radical mental health activists have been reluctant to engage directly with the issue of mental impairment which cannot be simply reduced to disabling social arrangements. Some have argued that this silence has got in the way of people dealing with the difficult aspects, and effects, of impairment (Crow, 1996a). As such, this has been referred to as the ‘elephant in the room’.1 We use it here to refer to the tendency to ignore (or disavow) the tricky question of the nature of madness and distress.

These ‘impairment effects’ are especially hard to acknowledge and describe in relation to madness and distress. Yet some people may experience severe ‘pain and discomfort’, as a result their own distress or madness or that of others. The impact of unusual experiences – such as disorganised thinking, racing thoughts, feelings of paranoia and persecution, or feelings of being controlled by others – while glaringly obvious on one level, and the cause of genuine distress, may be difficult to talk about in certain settings (Mulvany, 2000). We believe, however, that acknowledging and exploring these issues is necessary if we are to understand the application of disability policy to madness and distress. Therefore, we start this discussion with the unsettling nature of ‘madness’, and how it might differ from disability in relation to physical impairment.

Madness as unsettling

Madness is thoroughly social and deeply relational. In other words, what is seen as mad behaviour manifests and plays out, in relation to others, in a social context: ‘with mad people, very specific behaviours transgress cultural mores and it is these behavioural disruptions which become their supposed impairment’ (Nabbali, 2009, 7, our emphasis). Whether or not such behaviour is put down to a brain disease, neurological dysfunction, social factors, or whatever, in the words of one survivor activist: ‘it only exists through consensus and only persists by convention’ (Nabbali, 2009, 7). Similarly, Pilgrim and Tomasini (2012) point out that whereas physical disabilities, like mental health problems, often involve cultural and normative judgements and social role failure (possibly due to disabling barriers), ‘mental disorder…strongly implicates rule infraction as well’ (Pilgrim and Tomasini, 2012, 632). In other words, mental disorder, by its very definition, implies behaviour that transgresses agreed social norms and ‘emotion rules’ (Pilgrim and Tomasini, 2012, 640).

We might wish to challenge these social rules, deeming them to be inflexible and harmful (as indeed the social model has done, in relation to the treatment of people with physical impairments). However, in the case of madness, it has been argued that without some social contract about acceptable behaviour ‘social life as we know it would be impossible’ (Shotter, cited in Pilgrim and Tomasini, 2012, 640). Put another way, it has been argued, ‘if we were all mad there would be no functioning society, because there would be no implicit social contract that warranted any recurrent mutual accountability’ (Shotter, cited in Pilgrim and Tomasini, 2012, 640). While this vision may seem overly bleak, it does signal something about the extent of the enduring problem with which psychiatry and allied mental health professions have been charged to deal. If it was merely a matter of rule infraction then why should mad people be treated any differently from anyone else who breaks social rules, norms or laws? Why are they considered in need of protection, as disabled people?

One of the trickiest issues in these discussions is that the ‘impairment’ in mental health, can profoundly affect, not only the person themselves, but also those around them. Whereas a person’s interpersonal functioning is usually unaltered by a physical impairment per se (even if it might be profoundly affected by disabling social relations), madness is, by definition, deeply interpersonal (as well as intrapersonal). Indeed people are sometimes referred to as psycho-socially disabled, implying impairment at this level, that is, that people experience difficulties not only in relation to themselves (their ‘internal world’), but also with people around them.

As Nev Jones and Timothy Kelly illustrate (in Chapter 3) there is an enormous heterogeneity of user/survivor experience. This may encompass, for example, people who feel victimised and damaged by psychiatric intervention – and there are a lot of instances of that in the radical psychiatry literature (for example, Breggin, 2007; Whitaker, 2010; Burstow et al, 2014). However, it may also include people who feel that psychiatry has failed to intervene, or has intervened ineffectively. For example, a child brought up by a parent struggling with complex mental health issues who either refuses any support, or is insufficiently supported by the mental health system, may feel inadequately cared for and neglected. They may even experience long-term mental health problems as a result, an issue highlighted in very different ways by Doe (2011) and Jones (2014) . This illustrates uncomfortable issues that do not map neatly onto an overarching framework of individual rights, that is, the parent may have a right to refuse psychiatric treatment (and a right to parent); yet the child has rights too, to be loved and protected from neglect.

Pilgrim and Tomasini (2012) break down the complexity of mental impairment into: people whose behaviour is socially unintelligible; people who are so anxious or unhappy that they are unable to meet social obligations to others; and those who are have difficulty in maintaining mutually acceptable relationships with others. This is potentially useful because it provides a sociological, rather than a medicalised, codification which is probably more honest; though it perhaps rather too neatly maps onto the psychiatric categorisation of psychosis, neurosis and personality disorder, with all the pathologisation that entails. Their position is similar to that of Thomas Szasz (1960) who argues that psychiatry labels people whose behaviour offends others as psychotic, and those whose thoughts and feelings upset themselves as neurotic.

Pilgrim and Tomasini go on to suggest that the alignment of the user/survivor movement with the disability movement (and the social model of disability in particular) is fairly straightforward in relation to what is often called common ‘mental distress’, but more of a challenge in relation to what they call ‘risky behaviour or incorrigible conduct’ (Pilgrim and Tomasini, 2012, 642). It is, however, a challenge well worth engaging with. While people who experience ‘common mental health problems’ such as anxiety and depression are certainly stigmatised and oppressed, it is people with more ‘serious’ diagnoses (such as psychosis, schizophrenia and mania) who are more likely to experience on-going discrimination and social exclusion (Rose et al, 2011); and are, therefore, sorely in need of the protection and support of disability legislation. David Webb (Chapter 11) makes a compelling case for applying the social model to suicide/suicidal feelings which can certainly be seen as ‘risky behaviour’.

In relation to a physically disabled person, there wouldn’t usually be any issues regarding mental capacity and consent (although such concerns are more likely to be raised in relation to a person with learning difficulties). By contrast, whole legal systems have been put in place to assess, protect and sometimes override the legal capacity of those who are deemed ‘mentally ill’ or ‘mentally disordered’. That, among other reasons, is why human rights protections (such as those enacted by the European Court of Human Rights) often exclude people who are subject to mental health laws, on the grounds of ‘unsound mind’ (Spandler and Calton, 2009). The person themselves may not accept that they have a ‘mental health problem’ even though people around them consider that they do (and may have concerns about the safety of the person, their own safety, or that of others). That is one of the reasons why mental health laws allow people to be detained and treated against their will. Regardless of whether we think these mental health laws are inherently discriminatory (see Chapter 12 by Tina Minkowitz) or justifiable on the grounds of medical paternalism, their continued existence underlines the enormous complexity of the issues we are grappling with. As has often been pointed out (although rarely in critiques of psychiatry) it is not always psychiatry or the ‘psy professions’ that labels people as mad or mentally ill; they usually rubber stamp (and specifically medicalise) decisions which have been made already in the lay arena by family, friends, neighbours or colleagues.

With this in mind, Pilgrim and Tomasini (2012) make the case that reasonableness is central to understanding the difference between disability and madness/distress: ‘Although physically disabled people are disadvantaged in society, this is not about an attributed loss or lack of reason. By contrast loss or lack of reason is at the centre of the social reaction typically evoked by mental health problems…social exclusion is actively justified on grounds of un-reason’ (Pilgrim and Tomasini, 2012, 634, emphases in the original).

While lack of reason is seen as intrinsic to the ‘mental disorder’, it is important to note that receiving a psychiatric diagnosis doesn’t make someone necessarily or always unreasonable or an inherently unreasonable person. In the UK, the Mental Capacity Act (Department of Health, 2005) is interesting in this regard because it clearly states that: no-one should be automatically deemed lacking in capacity because of a disability or mental illness; that capacity should be assumed unless good evidence is given to the contrary; and that capacity should be assessed on a case-by-case basis (in accordance with the particular decision being made, not with the individual making it).2 It is also worth bearing in mind that everyone’s behaviour is context-bound, not just that of a person deemed to be mentally ill. Our behaviour may make sense only to ourselves, and sometimes not even to ourselves at the time; insight may come later, if at all. In addition, of course, there are people who might be considered ‘unreasonable’ or ‘irrational’ and are not psychiatrised. Politicians, bankers and chief executive officers are often given as examples (Babiak and Hare, 2006). Indeed, the attribution of ‘madness’ in these examples is often used as an (unsophisticated) critique and insult; witness recent discussions about Tony Blair’s continuing ‘irrational’ beliefs about the merits of the Iraq War (for example, Humphreys, 2014).

Given these kinds of negative assumptions and stereotypes about mad people in society, reluctance to explore these issues openly and honestly may be understandable. Indeed, influential social theorists such as Foucault (1967) have argued that modern society has been established on the basis of the active identification and exclusion of unreason. Many subsequent critiques of psychiatry have built on this argument and, necessary though these critiques may be, they may have inadvertently served to marginalise more difficult discussions about madness and distress. Be...