inconvenient complications: on the heterogeneities of

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Inconvenient complications: on the heterogeneities of madness and their relationship to disability Nev Jones and Timothy Kelly Our goal, in drafting early versions of the current chapter, was to ask hard questions about the potential synergies between the disability rights movement (and associated academic theory) and mad movement(s). To that end, we initially included a targeted section, centred on recent work on impairment, pain and embodiment within disability theory under the premise that this would facilitate an exploration of how work within disability studies might inform activist theory focused on madness. However, as we struggled through this analysis, we came to feel that our efforts were distinctly premature. While theoretical traction can certainly be gained from hybridisation across and between disparate domains, the complexity of movement-specific identities, social values and theoretical commitments seemed to demand that we grapple with our own problems, before too seriously looking elsewhere. We came to this task informed and also constrained by our own complicated and often confusing personal experiences of psychosis. If there is a point in the lives of activists when they feel a relative sense of certainty and stability in the way they view the politics of their movement(s), we have not yet reached it. In this sense, our theoretical hesitations undoubtedly reflect a more personal feeling of caution and uncertainty. Both of us grew up in the shadow of a parent with enduring and, in a very real way, ‘disabling’ struggles with psychosis. Unlike us, these members of our family – our mothers – live at the margins of society with no voice in either academic circles or centres of political organising. Like Spivak’s (1988) subaltern, it is questionable to what extent, in an authoritative or publicly legitimated way, they can speak at all. Our own trajectories have been very different: we will soon join the ranks of the less than 1 per cent of the US population with doctorates; when we speak, at least a large portion of the time, we are able to make ourselves heard. The differences between us (Nev and

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Madness, distress and the politics of disablement

Timothy) and between both of us and our mothers, serve as a constant reminder of the often pronounced differences in the experiences of individuals diagnosed or labelled with psychotic disorders in the United States. In our work as clinicians, peer facilitators and researchers, these differences – and their human and sociopolitical costs – have only become clearer and more pressing as time has gone on. With this personal context – these motivations and concerns – laid out, we turn to our chapter. The first section attempts to set out what we see as the key areas of diversity and variance among individuals labelled with psychiatric disorders, followed by a brief discussion of similar diversity within the disability rights movement. In the second section we include a brief discussion of broad similarities and differences between the user/survivor and disability movements, then turn to a few more concrete differences foregrounded by media perceptions of the Oscar Pistorius trial. We conclude with a discussion of the risks, and importance, of critically interrogating the identity politics internal to madness.

Heterogeneities of madness and disability There is no single, universally accepted, term for individuals labelled with serious mental illnesses. Instead, the proliferation of terms and labels underscores the many ways in which unusual psychological or mental experiences play out in terms of identity, activist goals and sociopolitical positioning. This multiplicity of positions is further complicated by the fact that the meanings of existing labels themselves fluctuate depending on the particular contexts in which they are deployed. Discussions of how madness or mental illnesses have come to be constituted as objects of medical discourse are numerous and beyond the scope of this chapter. It is nevertheless worth noting that many influential academic texts, including Canguilhem’s On the Normal and the Pathological (1950) and Foucault’s History of Madness (2006), while often illuminating, have implicitly de-emphasised many of the tensions at issue in this chapter. Indeed, in his critique of Foucault’s History, Derrida (1978) charges the latter with the employment of ‘a popular and equivocal notion of the concept of madness…as if…an assured and rigorous precomprehension of madness…were possible and acquired’ (p 41). While we readily acknowledge the contributions of careful genealogies of madness as a singular category, our analysis begins from a place of discontent or dis-ease with the inattention paid to the varieties of madness and their implications.

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Inconvenient complications

Over-generalisation is, of course, not limited to scholarly texts; informal activist discourse also often adheres to parallel processes of ideological narrowing. Pronounced differences in the natural course and meaning of psychosis, ranging from a few limited (sometimes even productive) episodes to chronic, debilitating impairments of language and communication are rarely acknowledged. In activist circles, these processes often occur through the policing of identity claims. For instance, MindFreedom International, a leading activist organisation, describes its members as ‘people labelled with psychiatric disabilities’ (website). This statement emphasises the experience of labelling while distancing itself from or, at the very least, implicitly decentring impairments, limitations or experiential alterations. In terms of activist projects, MindFreedom accordingly focuses on contesting practices of psychiatrisation. Ostensibly less radical consumer activists such as members of the Occupy-affiliated Mental Health Movement in Chicago, have fought to preserve psychiatric clinics that primarily serve homeless and/or severely economically marginalised ‘consumers’ with chronic psychiatric problems. In her ethnography of the US consumer/survivor movement, Linda Morrison (2005) captures (or inscribes) this tension as a dichotomy between radical activists – those who reject labels and identify as survivors of the psychiatric system – and reformist consumers whom she aligns with the ‘biomedical brain disease model of mental illness’ (p 168). She observes: While the c/s/x [user/survivor] movement is working hard to be inclusive, and represent a range of persons who are oppressed by psychiatry, the consumers who take the arch-conservative position…(analytically, a fully internalised deviance, medicalised deviance, fully psychiatrised position) are seen by the more radical activists to represent the most oppressed psychiatrised group. (p 169) This characterisation illustrates how insistence on a continued need for care in the face of ongoing impairment can come to be framed as internalised deviance by more anti-psychiatric activists. Thus, in a parallel process to the scholarly work discussed above, differences across and within madness(es) can be obscured under homogenised survivor and consumer identities. In the subsections that follow, we focus on five core areas of this heterogeneity: language; severity and dimension; course or temporal trajectory and intersectionality with other domains of social marginalisation or exclusion.

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Language of, and for, madness In the United States, key identifying terms include: consumer, service user, survivor, person with lived experience, person with (or labelled with) a mental illness, person with a psychiatric disability, and mad or mad-identified. On the surface, each of these terms privileges or centres a particular aspect of psychiatric experience: use or survival of mental health services; first person experience in a general or more specific sense (for example, of mental or psychological differences or protected legal status); distancing from or centring of mad experience as a core sense of personhood (that is, person-first vs mad-first language); and legal status. In practice however, specific sociopolitical trends and geopolitical contexts have further inflected them with a range of more nuanced connotations. For example, the term ‘survivor’ often indicates a more explicitly political and, at least rhetorically, radical self-positioning than ‘consumer’, which is negatively linked to Reagan-era neoliberalism in some circles; while ‘person with a psychiatric disability’ may index a stronger degree of allegiance with US cross-disability organising efforts and coalitional work. These broader cultural inflections notwithstanding, self-identification as a consumer in rural Illinois may signal adherence to a far more radical sociopolitical position than self-identification as a consumer in Western Massachusetts or other centres of alternative mental health activism in the US. Finally, the same individual may use different terms depending on their immediate context. To use ourselves as examples, we typically identify as user/survivors with fellow activists, but as individuals with a psychiatric disability when meeting with university officials in charge of disability-based academic accommodations and as mad-identified in discussions with humanities theorists. Severity and dimensions Although explicit hierarchies of severity or suffering are often discouraged in activist discourse, experiences of madness and the severity and dimensions of such experience are in fact extremely heterogeneous. These heterogeneities, in turn, carry important implications with respect to social acceptability, degree of risk for discrimination and social exclusion, centrality to identity and access to valued social roles and norms. What is important is that intersecting sociocultural factors – including race, religion, sexual identity, socioeconomic status and co-morbid chronic illness – have an impact not only on stigma, but on all aspects of mad experience, from meaning

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to outcome. Thus the relative prevalence of psychiatric disorders, the form that voices or other unusual perceptual experiences take, and the effectiveness and appeal of particular interventions can vary dramatically across cultural and socioeconomic groups. Multiple empirical studies, including systematic reviews, attest to the divergent ways in which both specific disorders and symptoms are culturally framed and placed into hierarchies (for example, Pescosolido et al, 2010; Schomerus et al, 2012). Both schizophrenia (presented as a categorical diagnosis) and psychotic symptoms typically elicit preferences for substantially greater social distance and higher reported fear than do depression or non-psychotic bipolar symptoms. These differences are mediated by social beliefs concerning diagnosticallybased differences in degree of social appropriateness, dangerousness and prognosis (Norman et al, 2012). Even within categorical diagnostic domains, specific experiences or symptoms may carry different cultural connotations. Voice hearing, for instance, has recently been tied to a rich history of spiritual experiences and religious revelation (for example, McCarthy-Jones, 2012) while, to our knowledge, no such –genealogical work has been carried out on so-called negative or deficit symptoms or disordered thought found in psychosis, nor on the cognitive difficulties associated with severe depression. Certain impairments also have different interpersonal consequences. For example, catatonic mutism or severely disorganised speech may have more severe consequences for the person than a preoccupation with unusual beliefs which do not alter their subjective communication to the same degree. To put this more bluntly, the struggles of a distressed individual who can nevertheless communicate with others, can and must be distinguished from an individual with thought disorder so severe that he or she can no longer be understood, even in the most basic of ways. Similarly for some individuals, madness engenders changes in personality and belief capable of driving even the most pacifistic person to acts of symbolic, interpersonal or physical violence (Jones and Shattell, 2014). For others, insight into the consequences of their actions never appears to be compromised. Mainstream psychiatry’s dependence on categorical disorders limits the usefulness of much of this work. However, psychiatric research has helped to establish the differential impact of a range of psychiatric diagnoses. Transnationally, quality of life and distress outcomes are consistently the worst in longitudinal studies of individuals with schizophrenia spectrum diagnoses, followed by bipolar disorder and depression (Goldberg and Harrow, 2004). Symptom dimensions also play out in divergent ways; for example, while voices are found across

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diagnostic categories, rates of frequent or chronic voices may be substantially higher among individuals diagnosed with schizophrenia versus bipolar or affective diagnoses (Goghari et al, 2012). Side effects of psychotropic medications are likewise not all equally severe; tardive dyskinesia, potentially resulting in irreversible involuntary movements or grimaces, occurs only in the context of antipsychotic use (Tarsy and Baldessarini, 2006) while low-dose antidepressants may have comparatively few serious negative side effects (Papakostas, 2007). However the addictive potential and withdrawal effects of benzodiazepines (primarily prescribed for anxiety) are notoriously severe (O’Brien, 2005). Finally, some disorders listed in the DSM seemingly occupy a grey zone between the psychiatric and the somatic, organic or neurological. Salient examples include childhood conduct disorders (often categorised as neurodevelopmental disabilities rather than mental illness); anorexia; so-called organic psychoses stemming from traumatic brain injury, neurological conditions, or chronic alcohol abuse; and geriatric dementias (Arciniegas et al, 2001). It is often unclear how, and on what basis, certain conditions, labels or diagnoses have come to be included or excluded in broader categorisations of madness or psychiatric disability by activists, clinicians and scholars. Still other conditions, such as chronic fatigue syndrome, have sparked significant controversy precisely because of the extent to which they blur the boundaries between physical illness and psychological or psychiatric distress (Horton-Salway, 2007). Course or temporal trajectory By ‘course’ we refer not only to specific prognostic patterns (for example, improving or deteriorating symptoms) but also to the differences engendered by ongoing versus episodic experiences of madness, the relative frequency of episodes and the presence of longterm psychiatric problems (or functional disabilities) versus full recovery following a discrete period of distress. In some cases, life trajectories may also involve multiple types of mental health experiences; for example, depression during adolescence, anxiety in college, and paranoia beginning in late young adulthood. The meaning and value of experiences might also change; voices might start out as benign or helpful and only later become more menacing and distressing, or vice versa. Clinical and activist discourse concerning recovery further colours the social significance of course. In some circles enduring symptoms

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may be attributed to iatrogenic harm (Whitaker, 2010), to cultural differences such as the relative degree of life stress in particular regions or societies (Myers, 2010) or to biological factors including genetic polymorphisms and inflammation (Sullivan et al, 2012). Recovery and ongoing madness may also be positively or negatively valued. For instance, narratives of recovery may in some cases be offered as examples of desirable individualistic, neoliberal self-overcoming (Myers, 2009) or as testaments to effective external (that is, clinical or pharmacological) intervention. Conversely, among other stakeholders, on-going experiences of madness or mental diversity may be positively formulated as sources of creative maladjustment, positive mental diversity or spiritual transformation (Farber, 2012). Treatment Likewise, treatment varies widely, both within and across psychiatric diagnoses, not necessarily coincidental with severity, clinical dimension or temporal course. Depending on their history, socioeconomic resources, prevailing family attitudes and social support, individuals with the same set of experiential changes and/or degree of distress might have very different contact with psychiatry. Some may be able to avoid the mental health system entirely and never come in contact with clinicians; others may be prescribed a psychotropic drug by a general practitioner with no other intervention, and still others may be hospitalised voluntarily or involuntarily for extended periods of time. Some individuals might find themselves captured by the forensic mental health system, incarcerated, subject to involuntary outpatient treatment orders, and so on. Others may have sufficient resources, or simply luck, that enables them to avoid these experiences altogether. Treatment may be long- or short-term, intensive or infrequent, harmful or helpful, and all shades in between. Current or ex-service users may come to see very similar treatments or interventions in profoundly different ways. For example, some may perceive maintenance antipsychotics (or even ECT) as life-saving, while others will view these as extremely harmful, perhaps even constituting serious human rights violations. Intersectionality All of the domains of heterogeneity listed above should be seen as further complicated by intersections between madness and such factors as race and ethnicity, religious affiliation, gender, class, housing and physical health status. A core tenet of intersectional theory is that

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confluences of social and biopolitical identity alter experience – not only in degree (that is, additively) but, what is more important, in kind (Collins, 1998). Relative to a white, middle-class college graduate who hears voices, a black, high-school drop-out from a socially deprived neighbourhood who is perceived as paranoid is likely to experience not merely more stigma, but stigma inflected by assumptions which link violence and social dysfunction to blackness, gender, class and mental illness in complex and synergistic ways (compare Metzl, 2009). Social class, including both educational background and degree of poverty or wealth, also profoundly influences access to and type of mental health services and/or community supports (Walker et al, 2012). Identity constructs such as mad pride or consumerism may also develop in ways that reflect or reinforce group-specific norms or assumptions, for instance as a product of predominantly white middle-class values. Notably, the participation of persons of colour in US user/survivor activism and research, particularly in leadership positions, is disproportionately low; a dynamic which rarely merits more than passing reference in either formal publications or informal activist forums (Jackson, 2002). In our own work within the community mental health system, we frequently cross paths with service users from severely marginalised backgrounds; people living well below the poverty line, dependent on welfare, isolated from family or other social support systems, living in sub-standard group homes or shelters and who in many cases, never had the opportunity to finish high school or attend college. Unsurprisingly, the advocacy goals of individuals living in these circumstances often strongly diverge from those of more privileged activists. Yoga, meditation, intensive psychotherapy and other activities that the latter frequently tout, may understandably appear as frivolous or bourgeois to individuals whose priorities centre on bare essentials such as warm food, housing and basic health care. Heterogeneities of disability The experiences generally included in the categories of physical and developmental disability are as wide-ranging and heterogeneous as those implicated in madness. On the severity spectrum, non-psychiatric disabilities range from conditions in which mobility or language may be profoundly affected, even absent, to those in which the impairments in question are invisible and/or minimally impairing, allowing the individual in question to pursue a normal (even conventional) career and life trajectory. Onset and course may be stable, deteriorating (as

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is most often the case for diseases such as Parkinson’s and multiple sclerosis), improving, or episodic (as in certain forms of epilepsy). Type and intensity of service use is equally variable; ranging from occasional physical, cognitive or rehabilitative therapy to institutionalisation and designation as a ward of the courts. Like individuals living under a diagnosis of a serious psychiatric disorder, disabled individuals may be placed high on the socioeconomic ladder, or be forced to live off subsistence-level disability and welfare benefits in public housing projects or group homes. When a diverse cross-section of disability activists and advocates is considered, there is arguably no more consensus regarding preferred language and the boundaries and terms of identity than exists within the broad user/survivor movement. Some disability activists advocate for person-first language, citing a desire to distance their core sense of personhood from their disability, while others strongly defend disability-first or even explicitly diagnosis-first language (Linton, 1998). Some medical diagnoses, including autism, have been embraced by activists, while others have been strongly rejected, for example hearing impairment or loss versus Deafness (Davis, 1995; Broderick and Ne’eman, 2008). As is true of user/survivor activism, the disability movement has tended to privilege certain sub-groups and symbols (most notably mobility-based disabilities and the iconic wheelchair) and to exclude others (for example temporary impairments such as broken limbs and in many cases, disabling terminal illnesses such as AIDS and many forms of cancer) often without any clear theoretical justification (Deal, 2003). In this vein, some disability studies scholars have drawn a distinction between so-called healthy and unhealthy disabilities. The latter includes conditions generally understood as illnesses or diseases that lead to deteriorating health, ongoing physical pain and in some cases, premature death, while the former includes more stable impairments that otherwise do not affect physical health in any extreme way (Wendell, 2001). Only members of the former group generally embrace an active disability identity. Finally, as is also the case across diverse user/survivor groups, there are disability advocates who strongly support more medical research and intervention (for example, cochlear implants to restore hearing or a cure for other disabling conditions) and others who see such interventions as oppressive and even, from a more radical perspective, veiled forms of genocide (Blume, 2009).

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Across disability and madness Differences: the cultural construction of identity While there are thus a number of parallels between the disability and mad movements in an Anglo-American context, this overlap is often more superficial than it might initially appear. Deep culture-bound differences often underwrite diverging public conceptions of the mind, brain and body in ways that have subtly, but fundamentally, influenced the particular sets of institutions and practices that have congealed around them. The brain of autistic neurodiversity activists, for instance, clearly functions in a way that diverges from the brain invoked in critical user/survivor circles even at times when the rhetorical parallels appear strong (compare Ortega, 2009). For many autism activists, the brain appears to serve as a somatic marker of positive (ontologically stable) difference, whereas in user/survivor discourse the brain generally operates as a testament to biopsychiatric processes of biological reductionism and pathologisation. The historical and sub-cultural trajectories of disability and mad activism have also taken very different shapes; differences mediated by an array of specific institutions and practices. In his special message to congress in 1963 for example, President Kennedy combines mental retardation and mental illness under the umbrella of mental disability, but frames each condition in fundamentally different ways. Advances in biology and pharmacology, he suggests, will eventually lead to cures for mental illness, but prevention takes centre stage vis-à-vis intellectual disability. For example, given links between intellectual disability and pre-natal nutrition, as well as child and maternal health, Kennedy proposes strengthening welfare benefits and early childhood education, while community-level psychosocial interventions are noticeably absent in his strategy for mental illness. This is despite the fact that Kennedy affirms that the majority of the mentally ill could be rehabilitated with progressive community care while retardation, once ensconced, holds no parallel promise of a potential return to normal social and community life. Contemporary medical technologies, including pre-implantation screening, pre-natal testing and elective early abortion have indeed made the prevention of certain intellectual and developmental disabilities possible, to an extent not found in psychiatric disorder, critically shaping both advocacy and the goals and means of public intervention. It also bears remembering that, from a more global perspective, categories of impairment, disorder and illness may in fact be divided

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or conjoined in markedly different ways across cultures (Ginsburg and Rapp, 2013). At the most basic level, for instance, western umbrella terms such as disability and madness may simply have no cultural currency or they may be configured according to qualitatively distinct rubrics. Littlewood (1988; 2006) reports that in Trinidad the term doltishness includes both intellectual disability and dementias of old age, conditions indicating a relatively normal slowing down of mental functions, while madness more narrowly maps onto psychosis and is believed to stem from the involvement of non-human spirits. Conversely, in rural Ireland persons with intellectual disabilities, but not psychosis, are often seen as touched by God by virtue of their divine simplicity. Although the focus of our chapter is explicitly AngloAmerican, we discuss these cultural variations in order to foreground the degree to which the etiologies, boundaries and identities of physically or neurologically universal conditions (for example, a broken spinal cord; epilepsy) may radically vary across cultures. Arguably these variations are not absent, but simply subtler, more naturalised or better concealed in western contexts. Conditions such as chronic fatigue syndrome/myalgic encephalitis (CFS/ME) foreground the contemporary liminality of conditions that simultaneously and ambiguously span the psychiatric and the physical, leading to enormous tensions over whether the mind or the body, but not both, is the defining site of pathology or dysfunction. Differences: violence, vulnerability and narrative Media coverage of the recent trial of Oscar Pistorius, a celebrated sprint runner and double amputee, underscores several further key cultural distinctions between made between physical disability versus psychiatric disorder. Accused of killing his girlfriend, Reeva Steenkamp, in a moment of either intense fear or jealous rage, Pistorius’s status as disabled has been linked with issues of violence in very different ways that other public figures who have psychiatric, particularly psychotic, histories. As Liddiard (2014) describes, physically or developmentally disabled men are rarely depicted as efficaciously violent, but rather simultaneously ‘weak, dependent, non-violent, and safe; and yet bitter, caustic, revengeful and angry’ (An (Extra)Ordinary Death, para 2). While some early commentators focused on the possible benefits of a temporary insanity case, premised on extreme fear, discussion of mental instability more generally has been all but absent. De Wet (2014) reports that, in the light of the Pistorius case, disability activists have, in private, been advocating the provision of subsidised handguns for

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individuals with disabilities, given their increased risk and vulnerability. This suggestion is strikingly at odds with widespread popular concerns over any form of gun access for individuals with psychiatric (particularly psychotic) histories. In our reading, a key difference is not just that madness and violence are more tightly coupled in the popular imaginary, but that fears of ‘the psychiatrically insane’ are uniquely grounded in perceptions of fundamental mental instability, unpredictability and acts of violence. These are seen as explicable in terms of a diagnosis, but generally not by way of a relatable psychological story-line. In place of the understandable, even pitiable fear or insecurity ascribed to a figure like Pistorius, the actions of the psychotic or mentally-ill offender are most often framed as random, coming from nowhere, distinctly nonnarrative or unemplotted. Indeed the moral un-understandability of violent acts is a core requirement of successful insanity defence pleas according to US Law (Insanity Defense Reform Act, 1984). But then again… Each time we mention a specific instance of divergence or intersection between madness and disability we are reminded of the heterogeneities within madness that implicate only some diagnoses or clusters of experience and not others. The history of deinstitutionalisation described in Kennedy’s (1963) special statement, for example, is of questionable relevance to individuals with so-called adjustment problems or mild forms of depression and anxiety; even though, over the past few decades, these problems have fallen under the gaze of biopsychiatry and exposed large numbers of people to psychotropic drugs. Likewise, the intersections of violence and madness in both public and legal imaginaries, particularly violence directed at others rather than the self, directly affects only a subset of mental health service users and survivors. In this sense, broad comparisons between physical, intellectual and psychiatric conditions are bound to fail, to the extent that they have not grappled with and unpacked differences within madness and disability. Up to this point we have perhaps insufficiently stressed the identity politics and potential controversies at stake in our foregrounding of heterogeneity. On the one hand, we risk strengthening and legitimising a hierarchy of suffering or marginalisation within madness, with potentially negative implications for the possibility of coalitional user/ survivor organising. We also arguably risk contributing to the further reification of questionable categories of madness. On the other hand,

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to leave intra-psychiatric differences untouched would be to allow questionable practices of representational over-reach – such as the continued representation of individuals with very severe, chronic psychiatric issues by those with mild, non-disabling or fully remitted conditions – to continue unchecked. It would also fail to consider the impact of hierarchies of class, education, socially valued identity and access; all factors that so often underwrite these processes of representation and influence.

Conclusion: complications we can’t ignore Documentation and publication…constitute interventions… that affect the rights of other participants…It thus behoves practitioners to ask themselves where their work – and not just their good intentions – places them in relationship to struggles for access to and control over public discourse. (Briggs, 2004, 184) As emphasised in our introduction, we are acutely aware of the extent to which our (largely academic) privilege has enabled us to write, authoritatively (if not expertly), about issues of difference, inclusion and exclusion within the user/survivor experience. Yet it feels important to raise these issues because they rarely make their way into literature on madness or user/survivor discourse. We certainly see our intentions as good but, to borrow from Briggs, how does our ‘work…place [us] in relationship to struggles for access…and control’? Our aim is definitely not to intervene in the sense of directly affecting processes of activist representation and leadership, nor, for that matter, to solve anything, even at the level of scholarship. Instead, our goal at this stage is to call attention to complications and absences frequently ignored in much academic and activist discourse. We insist that, whether or not more constructive directions are then taken, these complications be acknowledged and addressed.

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