A History of Mental Health Advocacy & Activism (Beginnings to 1990s)

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  1. Early advocacy and activism

The modern consumer/service-user/survivor movement is generally considered to have begun in the 1970s in the wake of the many civil rights movements that emerged at the time.[1] The Survivors’ History Group – a group founded in April 2005 and concerned with documenting the history of the movement – traces an earlier starting point.[2] The group sees affinity between contemporary activism and earlier attempts to fight stigma, discrimination and the poor treatment of individuals variously considered to be mad, insane and, since the dominance of the medical idiom, to suffer with mental illness.[3] In their website which documents Survivor history, the timeline begins with 1373, the year the Christian mystic Margery Kempe was born. Throughout her life, Margery experienced intense voices and visions of prophets, devils, and demons. Her unorthodox behaviour and beliefs upset the Church, the public, her husband, and resulted in her restraint and imprisonment on a number of occasions. Margery wrote about her life in a book in which she recounted her spiritual experiences and the difficulties she had faced.[4]

The Survivors’ history website continues with several recorded instances of individual mis-treatment on the grounds of insanity. But the first explicit evidence of collective action and advocacy in the UK appears in 1845 in the form of the Alleged Lunatics’ Friend Society: an organisation composed of individuals most of whom had been incarcerated in madhouses and subjected to degrading treatment (Hervey 1986). For around twenty years, the Society campaigned for the rights of patients, including the right to be involved in decisions pertaining to their care and confinement. In the US, around the same time, patients committed to a New York Lunatic Asylum produced a literary magazine – The Opal – published in ten volumes between 1851 and 1860. Although this production is now seen to have painted a rather benign picture of asylum life, and to have allowed voice only to those patients who were deemed appropriate and self-censorial (Reiss 2004), glimpses of dissatisfaction and even of liberatory rhetoric emerge from some of the writing (Tenney 2006).

An important name in what can be considered early activism and advocacy is Elizabeth Packard. In 1860, Packard was committed to an insane asylum in Illinois by her husband, a strict Calvinist who could not tolerate Packard’s newly expressed liberal beliefs and her rejection of his religious views. At the time, state law gave husbands this power without the need for a public hearing. Upon her release, Packard campaigned successfully for a change in the law henceforth requiring a jury trial for decisions to commit an individual to an asylum (Dain 1989, p.9). Another important campaigner is Clifford Beers, an American ex-patient who published in 1908 his autobiography A Mind That Found Itself. Beer’s biography documented the mistreatment he experienced at a number of institutions. The following year he founded the National Committee for Mental Hygiene (NCMH), an organisation that sought to improve conditions in asylums and the treatment of patients by working with reform-minded psychiatrists. The NCMH achieved limited success in this respect, and its subsequent efforts focused on mental health education, training, and public awareness campaigns in accordance with the then dominant concept of mental hygiene (Dain 1989, p. 6).

  1. 1900s−1950s: ‘Mental Hygiene’

On both sides of the Atlantic, mental health advocacy in the first few decades of the 20th century promoted a mental hygiene agenda.[5] Mental hygiene is an American concept and was understood as “the art of preserving the mind against all incidents and influences calculated to deteriorate its qualities, impair its energies, or derange its movements” (Rossi 1962). These “incidents and influences” were conceived broadly and included “exercise, rest, food, clothing and climate, the laws of breeding, the government of the passions, the sympathy with current emotions and opinions, the discipline of the intellect”, all of which had to be governed adequately to promote a healthy mind (ibid.). With such a broad list of human affairs under their purview, the mental hygienists had to fall back on a set of values by which the ‘healthy’ life-style was to be determined. These values, as argued by Davis (1938) and more recently by Crossley (2006), were those of the educated middle classes who promoted mental hygiene in accordance with a deeply ingrained ethic. For example, extra-marital sex was seen as a deviation and therefore a potential source of mental illness. Despite this conservative element, the discourse of mental hygiene was progressive, for its time, in a number of ways: first, it considered mental illness to arise from interactions among many factors, including the biological and the social, and hence to be responsive to improvements in the person’s environment; second, it fought stigma by arguing that mental illness is similar to physical illness and can be treated; third, it promoted the prevention of mental illness, in particular through paying attention to childhood development; and fourth, it argued for the importance of early detection and treatment (Crossley 2006, pp. 71-75).

In the US, Clifford Beer’s own group, the NCMH, continued to advance a mental hygiene agenda and, in 1950, merged with two other groups to form the National Association for Mental Health, a non-profit organisation that exists since 2006 as Mental Health America.[6] In the UK, mental hygiene was promoted by three inter-war groups that campaigned for patient wellbeing and education of the public. These groups merged, in 1946, to form the National Association for Mental Health (NAMH), which later, in 1972, changed its name to Mind, the name under which it remains to this day as a well-known and influential charity.[7] In the late 50s, these two groups continued to educate the public through various campaigns and publications, and were involved in training mental health professionals in accordance with hygienist principles. In addition, they were advocates for mental patients, campaigning for the government to improve commitment laws, and, in the UK, working with the government to instate the move from asylums to ‘care in the community’.

Even though the discourse of mental hygiene was dominant during these decades, the developments that were to come in the early 70s were already taking shape in the emerging discourse of civil rights. A good example of these developments in the UK is the National Council for Civil Liberties (NCCL), better known today as Liberty. Founded in 1934 in response to an aggressive police reaction to protestors during the “hunger marches”, it became involved in 1947 in its first “mental health case”: a woman wrongly detained in a mental health institution for what appeared to be ‘moral’ rather than ‘medical’ reasons.[8] During the 50s, the NCCL campaigned vigorously for reform of mental health law to address this issue, and was able to see some positive developments in 1959 with the abolition of the problematic 1913 Mental Deficiency Act and the introduction of tribunals in which patients’ interests were represented.

  1. 1960s: The ‘Anti-psychiatrists’

During the 1960s criticism of mental health practices and theories was carried through by a number of psychiatrists who came to be referred to as the ‘anti-psychiatrists’. Most famous among them were Thomas Szasz, R. D. Laing, and David Cooper. Szasz (1960) famously argued that mental illness is a myth that legitimizes state oppression (via the psychiatric enterprise) on those judged as socially deviant and perceived to be a danger to themselves or others. Mental illnesses for Szasz are problems in living: morally and existentially significant problems relating to social interaction and to finding meaning and purpose in life. Laing (1965, 1967) considered the medical concept of schizophrenia to be a label applied to those whose behaviour seems incomprehensible, thereby permitting exercises of power. For Laing (1967, p. 106) the people so labelled are not so much experiencing a breakdown but a breakthrough: a state of ego-loss that permits a wider range of experiences and may culminate in a “new-ego” and an “existential rebirth”. These individuals require guidance and encouragement, and not the application of a psychiatric label that distorts and arrests this process. David Cooper (1967, 1978) considered ‘schizophrenia’ a revolt against alienating familial and social structures with the hope of finding a less-alienating, autonomous yet recognised existence. In Cooper’s (1978, p. 156) view, it is precisely this revolt that the ‘medical apparatus’, as an agent of the ‘State’, aims to suppress.

From the perspective of those individuals who have experienced psychiatric treatment and mental distress, the anti-psychiatrists of the 1960s were not activists but dissident mental health professionals. As will be noted in the following section, the mental patients’ liberation movement did not support the inclusion  of sympathetic professionals within its ambit. Nevertheless, the ideas of Thomas Szasz, R. D. Laing, and David Cooper were frequently used by activists themselves to ground their critique of mental health institutions and the medical model. At the time, these ideas were radical if not revolutionary, and it is not surprising that they inspired activists engaged in civil rights struggles in the 1970s.

  1. The 1970s civil rights movements

Civil rights activism in mental health began through the work of a number of groups that came together in the late 60s and early 70s in the wake of the emerging successes and struggles of Black, Gay and women civil rights activists. In the UK, a notable group was the Mental Patients’ Union (1972), and in the US three groups were among the earliest organisers: Insane Liberation Front (1970), Mental Patients’ Liberation Front (1971), and Network Against Psychiatric Assault (1972).[9] An important difference between these groups and earlier ones that may have also pursued a civil rights agenda such as the NCCL, is that they, from the start or early on, excluded sympathetic mental-health professionals and were composed solely of patients and ex-patients. Judi Chamberlin (1990, p. 324), a key figure in the American movement, justified it in this way:

Among the major organising principles of [black, gay, women’s liberation movements] were self-definition and self-determination. Black people felt that white people could not truly understand their experiences … To mental patients who began to organise, these principles seemed equally valid. Their own perceptions about “mental illness” were diametrically opposed to those of the general public, and even more so to those of mental health professionals. It seemed sensible, therefore, not to let non-patients into ex-patient organisations or to permit them to dictate an organisation’s goals.

The extent of the resolve to exclude professionals – even those who would appear to be sympathetic such as the anti-psychiatrists – is evident in the writings of Chamberlin as well as in the founding document of the Mental Patients’ Union. Both distance themselves from anti-psychiatry on the grounds that the latter is “an intellectual exercise of academics and dissident mental health professionals” which, while critical of psychiatry, did not include ex-patients or engage their struggles (Chamberlin 1990, p. 323).[10] Further, according to Chamberlin, a group that permits non-patients and professionals inevitably abandons its liberatory intentions and ends up in the weaker position of attempting to reform psychiatry. And reform was not on the agenda of these early groups.

On the advocacy front, the mental patients’ liberation movement – the term generally used to refer to this period of civil rights activism – sought to end psychiatry as they knew it.[11] They sought to abolish involuntary hospitalisation and forced treatment, to prioritise freedom of choice and consent above other considerations, to reject the reductive medical model, to restore full civil rights to mental patients including the right to refuse treatment, and to counter negative perceptions in the media such as the inherent dangerousness of the ‘mentally ill’. In addition to advocacy, a great deal of work went into setting up non-hierarchical, non-coercive alternatives to mental health institutions such as self-help groups, drop-in centres, and retreats.[12] The purpose of these initiatives was not only to provide support to individuals in distress, but to establish that mental patients are self-reliant and able to manage their own lives outside of mental health institutions. Central to the success of these initiatives was a radical transformation in how ex-patients understood their situation. This transformation was referred to as consciousness-raising.

Borrowed from the women’s liberation movement, consciousness-raising is the process of placing elements of one’s situation in the wider context of systematic social oppression (Chamberlin 1990). This begins to occur in meetings in which people get together and share their experiences, identifying commonalities, and re-interpreting them in a way that gives them broader meaning and significance. An implication of this process is that participants may be able to reverse an internalised sense of weakness or incapability – which hitherto they may have regarded as natural – and regain confidence in their abilities. In the mental patients’ liberation movement, consciousness-raising involved ridding oneself of the central assumptions of the ‘mental health system’: that one has an illness, and that the medical profession is there to provide a cure. In the discourse of the time, inspired by the writings of Thomas Szasz and others, psychiatry was a form of social control, medicalising unwanted behaviour as a pre-text for ‘treating’ it and forcing individuals into a sane way of behaving. By sharing experiences, participants begin to see that the mental health system has not helped them. In a book first published in 1977 and considered a founding and inspirational document for mental health activists, Chamberlin (1988, pp. 70-71) writes of the important insights ex-patients gained through consciousness-raising:

Consciousness-raising … helps people to see that their so called symptoms are indications of real problems. The anger, which has been destructively turned inward, is freed by this recognition. Instead of believing that they have a defect in their psychic makeup (or their neurochemical system), participants learn to recognise the oppressive conditions in their daily lives.

Mental suffering and distress, within this view, are a normal response to the difficulties individuals face in life such as relationship problems, social inequality, poverty, loss and trauma. In such situations, individuals need a sympathetic, caring and understanding response, and not the one society offers in the form of psychotropic drugs and the difficult environment of a mental health hospital (Chamberlin 1988).  Consciousness-raising does not stop at the ‘mental health system’, and casts a wider net that includes all discriminatory stereotypes against ex-patients. In a deliberate analogy with racism and sexism, Chamberlin uses the term mentalism to refer to the widespread social tendency to call disapproved of behaviour ‘sick’ or ‘crazy’. Mental patients’ liberation required of patients and ex-patients to resist the ‘mental health system’ as well as social stereotyping, and to find the strength and confidence to do so. In this context, voluntary alternatives by and for patients and ex-patients were essential to providing a forum for support and consciousness-raising.

  1. Consumers/Service-Users & Survivors

In the 1980s, the voices of advocates and activists began to be recognised by national government agencies and bodies. This was in the context of a shift towards market approaches to health-care provision, and the idea of the patient as a consumer of services (Campbell 2009). Patients and ex-patients – now referred to as consumers (US) or users (UK) of services – were able to sit in policy meetings and advisory committees of mental health services and make their views known. Self-help groups, which normally struggled for funding, began to be supported by public money. In the US, a number of consumer groups formed that were no longer opposed to the medical model or to working with mental health professionals in order to reform services.[13] While some considered these developments to be positive, others regarded them as indicating what Linda Morrison, an American activist and academic, referred to as a “crisis of co-optation”: the voice of mental health activists had to become acceptable to funding agencies, which required relinquishing radical demands in favour of reform (Morrison 2005, p. 80). Some activists rejected the term consumer as it implied that patients and professionals were in an equal relation, with patients free to determine the services they receive (Chamberlin 1988, p. vii).[14]

Countering the consumer/user discourse was an emerging survivor discourse reflected in a number of national groups, for example the National Association of Psychiatric Survivors (1985) in the US and Survivors Speak Out (1986) in the UK. Survivor discourse shared many points of alignment with earlier activism, but whereas the latter was opposed to including professionals and non-patients, survivors were no longer against this as long as it occurred within a framework of genuine and honest partnership and inclusion in all aspects of service structure, delivery and evaluation (Chamberlin 1995, Campbell 1992). [15]

In the US, developments throughout the 1990s and into the millennium confirm the continuation of these two trends: the first oriented towards consumer discourse and involvement, and the second towards survivors, with a relatively more radical tone and a concern with human rights (Morrison 2005). Today, representative national groups for these two trends include, respectively, the National Coalition for Mental Health Recovery (NCMHR), and Mind Freedom International (MFI).[16] The former is focused on promoting comprehensive recovery, approvingly quoting the ‘New Freedom Mental Health Commission Report’ target of a “future when everyone with mental illness will recover”.[17] To this end they campaign for better services, for consumers to have a voice in their recovery, for tackling stigma, discrimination, and promoting community inclusion via consumer-run initiatives that offer assistance with education, housing and other aspects of life. On the other hand, MFI state their vision to be a “nonviolent revolution in mental health care”. Unlike NCMHR, MFI do not use the language of ‘mental illness’, and support campaigns such as Creative Maladjustment, Mad Pride, and Boycott Normal. Further, MFI state emphatically that they are completely independent and do not receive funds from or have any links with government, drug companies or mental health agencies.[18] Despite their differences, both organisations claim to represent both survivors and consumers, and both trace their beginnings to the 1970s civil rights movements. But whereas NCMHR refer to ‘consumers’ always first and generally more often, MFI do the opposite and state that the majority of their members identify as psychiatric survivors.

In the UK, the service-user/survivor movement – as it came to be referred to – is today represented nationally by a number of groups.[19] Of note is the National Survivor User Network (NSUN) which brings together survivor and user groups and individuals across the UK in order to strengthen their voice and assist with policy change.[20] Another long-standing group (1990), though less active today, is the UK Advocacy Network, a group which campaigns for user led advocacy and involvement in mental health services planning and delivery.[21] A UK survey done in 2003 brings some complexity to this appearance of a homogenous movement (Wallcraft et al. 2003). While most respondents agreed that there is a national user/survivor movement – albeit a rather loose one – different opinions arose on all the important issues; for example, disagreements over whether compulsory treatment can ever be justified, and whether receiving funds from drug companies compromises the movement. In addition, there were debates over the legitimacy of the medical model, with some respondents rejecting it in favour of social and political understandings of mental distress. In this context, they drew a distinction between the service-user movement and the survivor movement, the former concerned with improving services, and the latter with challenging the medical model and the “supposed scientific basis of mental health services” (Wallcraft et al. 2003, p. 50). More radical voices suggested that activists who continued to adopt the medical model have not been able to rid themselves of the disempowering frameworks of understanding imposed by the mental health system. In a similar vein, some respondents noted the de-politicisation of the movement, as activists ceased to be primarily concerned with civil rights and began to work for the mental health system (Wallcraft et al. 2003, p. 14).

In summary, there exists within the consumer/service-user/survivor movements in the US and the UK a variety of stances in relation to involuntary detention and treatment, acceptable sources of funding, the medical model, and the extent and desirability of user involvement in services. Positions range from working for mental health institutions and reforming them from the ‘inside’, to rejecting any co-operation and engaging in activism to end what is considered psychiatric abuse and social discrimination in the guise of supposed medical theory and treatment. It appears that within national networks and movements pragmatic and co-operative approaches are more common, with radical positions pushed somewhat aside though by no means silenced. In this context Mad Pride, representing the latest wave of activism in mental health, re-invigorates the radicalism of the movement and makes the most serious demand yet of social norms and understandings. But Mad Pride, underpinned by the notions of Mad culture and Mad identity, builds on the accomplishments of Survivor identity to which I now briefly turn.

  1. Survivor identity

The connotations of survivor discourse are unmistakable and powerful. With survivor discourse the term ‘patient’ and its implications of dependence and weakness are finally discarded (Crossley 2004, p.169). From the perspective of those individuals who embraced the discourse, there is much that they have survived: forced detention in the mental health system; aggressive and unhelpful treatments; discrimination and stigma in society; and, for some, the distress and suffering they experienced and which was labelled by others ‘mental illness’. By discarding of what they came to see as an imposed identity – viz. ‘patient’ – survivors took one further step towards increased self-definition (Crossley 2006, p. 182). Further, the very term ‘survivor’ implies a positive angle to this definition in so far as to survive something implies resilience, strength, and other personal traits considered valuable. Morrison (2005, p. 102) describes it as the “heroic survivor narrative” and accords it a central function in the creation of a collective identity for the movement and a shared sense of injustice.

Central to survivor identity is the importance of the voice of survivors, and their ability to tell their own stories, a voice which neither society nor the psychiatric system respected. The well-known British activist and poet Peter Campbell (1992, p. 122) writes that a great part of the “damage” sustained in the psychiatric system

has been a result of psychiatry’s refusal to give value to my personal perceptions and experience … I cannot believe it is possible to dismiss as meaningless people’s most vivid and challenging interior experiences and expect no harm to ensue.

The emphasis on survivor voice highlights one further difference from 1970s activism: whereas earlier activists sustained their critique of psychiatry by drawing upon the writings of Szasz, Goffman, Marx and others, survivor discourse eschewed such sources of ‘authority’ in favour of the voice of survivors themselves; Crossley (2004, p. 167) writes:

Survivors have been able to convert their experiences of mental distress and (mis)treatment into a form of cultural and symbolic capital. The disvalued status of the patient is reversed within the movement context. Therein it constitutes authority to speak and vouches for authenticity. The experience of both distress and treatment, stigmatized elsewhere, has become recognized as a valuable, perhaps superior knowledge base. Survivors have laid a claim, recognized at least within the movement itself, to know ‘madness’ and its ‘treatment’ with authority, on the basis that they have been there and have survived it.

Survivors are therefore experts on their own experiences, and experts on what it is like to be subject to treatment in mental health institutions and to face stigma and discrimination in society. So construed, to survive is to be able to emerge from a range of difficulties, some of which are external and others internal, belonging to the condition (the distress, the experiences) that led to the encounter with psychiatry in the first place. In this sense, survivor discourse had not yet been able to impose a full reversal of the negative value attached to phenomena of madness, a value reflected in the language of mental illness, disorder and pathology. This is clearly evident in the idea that one had survived the condition, for if that is the attitude one holds towards it, it is unlikely that the ‘condition’ is looked upon positively or neutrally (except perhaps teleologically in the sense that it had had a formative influence on one’s personality). Similarly, if one considers oneself to have survived mental health institutions rather than the condition, there still is no direct implication that the condition itself is regarded in a non-negative light, only that the personal traits conducive to survival are laudable. It is only with the discourse of Mad Pride, yet to come, that the language of mental illness and the social norms and values underpinning it are challenged in an unambiguous manner.

Mohammed Abouelleil Rashed (2018)

Note: the above is an excerpt from Madness and the Demand for Recognition: A Philosophical Inquiry into Identity and Mental Health Activism (Oxford University Press, 2019).

***

[1] The following account outlines key moments, figures, groups and strategies in mental health advocacy and activism; it is not intended to be exhaustive but rather to illustrate the background to the Mad Pride movement and discourse.

[2] The timeline can be found at: http://studymore.org.uk/mpu.htm. (The website states that Survivor history is being compiled into a book.) See also Campbell and Roberts (2009).

[3] In contrast to Survivor history, there is a tradition of historical and critical writing on the history of ‘psychiatry’ and ‘madness’, and on the development of lunacy reform and mental health law. Notable names in this tradition are Roy Porter, Andrew Scull, and Michel Foucault.

[4] See Peterson (1982, pp. 3-18).

[5] This section benefits, in part, from Crossley’s (2006, Chapter 4) account of mental hygiene.

[6] Mental Health America. Online: http://www.mentalhealthamerica.net/

[7] Mind. Online: http://www.mind.org.uk/

[8] The history of Liberty can be found on their website: https://www.liberty-human-rights.org.uk/who-we-are/history/liberty-timeline

[9] In the US, groups were able to communicate with each other through a regular newsletter, Madness Network News (1972-1986), and an annual Conference on Human Rights and Against Psychiatric Oppression (1973-1985).

[10] For a similar point see the founding document of the Mental Patients’ Union, reprinted in Curtis et al. (2000, pp. 23-28).

[11] Some activists referred to themselves as ‘psychiatric inmates’ or ‘ex-inmates’ highlighting the fact of their incarceration in mental institutions and their rejection of the connotations of the term ‘patient’. This early difference in terminology – inmate versus patient – prefigures the multiplicity of terms and associated strategies that will come to define activism and advocacy in mental health to this day.

[12] The earliest example of a self-help group is WANA (We Are Not Alone). Formed in New York in the 1940s as a patient-run group, it developed into a major psychosocial rehabilitation centre, eventually to be managed by mental health professionals (see Chamberlin 1988, pp. 94-95).

[13] See Bluebird’s History of the Consumer/Survivor Movement. Online: https://www.power2u.org/downloads/HistoryOfTheConsumerMovement.pdf

[14] Mclean (1995, p. 1054) draws the distinction between consumers and survivors as follows: “Persons who identify themselves as ‘consumers’, ‘clients’ or ‘patients’, tend to accept the medical model of mental illness and traditional mental health treatment practices, but work for general system improvement and for the addition of consumer controlled alternatives. Those who refer to themselves as ‘ex-patients’, ‘survivors’ or ‘ex-inmates’ reject the medical model of mental illness, professional control and forced treatment and seek alternatives exclusively in user controlled centres.”

[15] Consumers and survivors aside, more radical voices persisted, continuing the discourse and activities of the 1970s’ groups. These voices were vehemently opposed to psychiatry and rejected any cooperation with services or with advocates/activists who tended towards reform. Examples include the Network to Abolish Psychiatry (1986) in the US and Campaign Against Psychiatric Oppression (CAPO, 1985) in the UK, both of which were active for a few years in the 1980s. (CAPO was an offshoot of the earlier Mental Patients’ Union.) For these groups, the ‘mental health system’ was intrinsically oppressive and had to be abolished: attempts to reform it, merely strengthened it (see Madness Network News, Summer 1986, vol.8, no.3, p.8). Reflecting on the beginnings of Survivors Speak Out (SSO, 1986), Peter Campbell, a founder, wrote that CAPO and other “separatist” groups were more concerned with “philosophical and ideological issues” and that SSO was “born partly in reaction to this: they were the first part of the ‘pragmatic’ wing which now dominates the user movement” with an emphasis on dialogue with others (Peter Campbell on The History and Philosophy of The Survivor Movement. Southwark Mind Newsletter, issue 24 – year not specified).

[16] Note that the reference here is to national networks and groups and not the local groups engaged in self-help, support, education, training, and advocacy of which there are hundreds in the US, UK and elsewhere.

[17] National Coalition for Mental Health Recovery. Online: http://www.ncmhr.org/purpose.htm

[18] Mind Freedom International. Online: http://www.mindfreedom.org/mfi-faq

[19] National organisations are of two types: those concerned with mental health generally (discussed in the text), and those with a focus on a particular condition or behaviour such as the Hearing Voices Network and the National Self-Harm network.

[20] National Survivor User Network. Online: https://www.nsun.org.uk/our-vision

[21] UK Advocacy Network. Online: http://www.u-kan.co.uk/mission.html

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In Defense of Madness: The Problem of Disability

By developing a perspective on the social model of disability and by appealing to the concept of intelligiblity, I respond to arguments against Mad Pride activism. You can access the articlm_covere HERE.

Abstract: At a time when different groups in society are achieving notable gains in respect and rights, activists in mental health and proponents of mad positive approaches, such as Mad Pride, are coming up against considerable challenges. A particular issue is the commonly held view that madness is inherently disabling and cannot form the grounds for identity or culture. This paper responds to the challenge by developing two bulwarks against the tendency to assume too readily the view that madness is inherently disabling: the first arises from the normative nature of disability judgments, and the second arises from the implications of political activism in terms of being a social subject. In the process of arguing for these two bulwarks, the paper explores the basic structure of the social model of disability in the context of debates on naturalism and normativism, the applicability of the social model to madness, and the difference between physical and mental disabilities in terms of the unintelligibility often attributed to the latter.

More Things in Heaven and Earth

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For a few months in 2009 and 2010 I was a resident of Mut, a small town in the Dakhla Oasis in the Western desert of Egypt. My aim was to become acquainted with the social institution of spirit possession, and with sorcery and Qur’anic healing (while keeping an eye on how all of this intersects with ‘mental disorder’ and ‘madness’). I learnt many things, among which was the normalness with which spirit possession was apprehended in the community: people invoked spirits to explain a slight misfortune as much as a life- changing event; to make sense of what we would refer to as ‘schizophrenia’, and to make sense of a passing dysphoria. It was part of everyday life. The way in which spirit possession cut across these diverse areas of life got me thinking about the broader role it plays in preserving meaning when things go wrong. To help me think these issues through I brought in the concepts of ‘intentionality’ and ‘personhood’. The result is my essay More Things in Heaven and Earth: Spirit Possession, Mental Disorder, and Intentionality (2018, open access at the Journal of Medical Humanities).

The essay is a philosophical exploration of a range of concepts and how they relate to each other. It appeals sparingly, though decisively, to the ethnography that I had conducted at Dakhla. If you want to know more about the place and the community you can check these blog-posts:

The Dakhla Diaries (1) : Fast to Charing-X, Slow to Hell

The Dakhla Oasis: Stories from the ‘field’ (0)

The Dakhla Diaries (3): Wedding Invitation

Old Mut, Dakhla

The Dakhla Oasis: Stories from the ‘field’ (I)

And this is a piece I published in the newspaper Al-Ahram Weekly (2009) voicing my view on some of the practices that I had observed: To Untie or Knot

 

The Identity of Psychiatry in the Aftermath of Mad Activism

[Introduction to an essay I am working on for a special issue of the Journal of Medicine & Philosophy with the title ‘The Crisis in Psychiatric Science’]

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THE IDENTITY OF PSYCHIATRY IN THE AFTERMATH OF MAD ACTIVISM

  1. INTRODUCTION

 Psychiatry has an identity in the sense that it is constituted by certain understandings of what it is and what it is for. The key element in this identity, and the element from where other features arise, is that psychiatry is a medical speciality. Upon completion of their medical education and during the early years of their training, medical students – now budding doctors – make a choice about the speciality they want to pursue. Psychiatry is one of them, and so is ophthalmology, cardiology, gynaecology, and paediatrics. Modern medical specialities share some fundamental features: they treat conditions, disorders, or diseases; they aspire to be evidence-based in the care and treatments they offer; they are grounded in basic sciences such as physiology, anatomy, histology, and biochemistry; and they employ technology in investigations, research, and development of treatments. All of this ought to occur (and in the best of cases does occur) in a holistic manner, taking account of the whole person and not just of an isolated organ or a system; i.e. person-centred medicine (e.g. Cox, Campbell, and Fulford 2007). In addition, it is increasingly recognised that the arts and humanities have a role to play in medical education, training, and practice. Literature, theatre, film, history, and the various arts, it is argued, can help develop the capacity for good judgement, and can broaden the ability of clinicians to understand and empathise with patients (e.g. Cook 2010, McManus 1995). None of the above, I will assume in this essay, is particularly controversial.

Even though psychiatry is a medical speciality, it is a special medical speciality. This arises from its subject matter, ordinarily conceived of as mental health conditions or disorders, to be contrasted with physical health conditions or disorders. Psychiatry deals with the mind not working as it should while ophthalmology, for example, deals with the ophthalmic system not working as it should. The nature of its subject matter raises certain complexities for psychiatry that, in extreme, are sometimes taken to suggest that psychiatry’s positioning as a medical speciality is suspect; these include the normative nature of psychiatric judgements, the explanatory limitations of psychiatric theories, and the classificatory inaccuracies that beset the discipline.[1] Another challenge to psychiatry’s identity as a medical speciality comes from particular approaches in mental health activism. Mad Pride and mad-positive activism (henceforth Mad activism) rejects the language of ‘mental illness’ and ‘mental disorder’, and rejects the assumption that people have a ‘condition’ that is the subject of treatment. The idea that medicine treats ‘things’ that people ‘have’ is fundamental to medical practice and theory and hence is fundamental to psychiatry in so far as it wishes to continue understanding itself as a branch of medicine. Mad activism, therefore, challenges psychiatry’s identity as a medical speciality.

In this essay, I argue that among these four challenges, only the fourth requires of psychiatry to rethink its identity. By contrast, as I demonstrate in section 2, neither the normative, nor the explanatory, or the classificatory complexities undermine psychiatry’s identity as a medical speciality. This is primarily for the reason that the aforementioned complexities obtain in medicine as a whole, and are not unique to psychiatry even if they are more common and intractable. On the other hand, the challenge of Mad activism is a serious problem. In order to understand what the challenge amounts to, I develop in section 3 the notion of the hypostatic abstraction, a logical and semantic operation which I consider to lie at the heart of medical practice and theory. It distinguishes medicine from other social institutions concerned with human suffering such as religious and some therapeutic institutions. In section 4 I demonstrate how Mad activism challenges the hypostatic abstraction. And in section 5 I discuss a range of ways in which psychiatry can respond to this challenge, and the modifications to its identity that may be necessary.

[1] These are not the only complexities; there are, for example, well-known difficulties and controversies surrounding the efficacy and risks of anti-depressant and anti-psychotic medication. In addition, psychiatry faces distinctive ethical complexities arising from the fact that mental health patients can be particularly vulnerable which raises questions of capacity not ordinarily raised in other medical specialities (see Radden and Sadler 2010).

 

In Defence of Madness: The Problem of Disability

My essay, about to be published in the Journal of Medicine & Philosophy.

I write defending mad positive approaches against the tendency to adopt a medical view of the limitations associated with madness. Unlike most debates that deal with similar issues – for example the debate between critical psychiatrists and biological psychiatrists, or between proponents of the social model of disability versus those who endorse the medical model of disability – my essay is not a polemical adoption of one or other side, but a philosophical examination of how we can talk about disability in general, and madness in particular.

You can read the essay here: IN DEFENCE OF MADNESS

And here is the abstract: At a time when different groups in society are achieving notable gains in respect and rights, activists in mental health and proponents of mad positive approaches, such as Mad Pride, are coming up against considerable challenges. A particular issue is the commonly held view that madness is inherently disabling and cannot form the grounds for identity or culture. This paper responds to the challenge by developing two bulwarks against the tendency to assume too readily the view that madness is inherently disabling: the first arises from the normative nature of disability judgements, and the second from the implications of political activism in terms of being a social subject. In the process of arguing for these two bulwarks, the paper explores the basic structure of the social model of disability in the context of debates on naturalism and normativism; the applicability of the social model to madness; and the difference between physical and mental disabilities in terms of the unintelligibility often attributed to the latter

Beyond Dysfunction: Distress & the Distinction Between Social Deviance & Mental Disorder

Over the course of last year I have been working on a small project with Rachel Bingham examining the possibility of distinguishing ‘social deviance’ from ‘mental disorder’ in light of recent work on concepts of health. The result was an essay published recently in the journal Philosophy, Psychiatry & Psychology (21:3-September 2014).

Johanna Moncrieff and Dan Stein wrote commentaries on our essay to which we responded in a short piece published in the same issue with the original essay.

In our response to Moncrieff and Stein we found it necessary to point out that in the writings of some critical psychiatrists and psychologists there is a problematic conflation of empirical with conceptual issues in relation to ‘mental disorder’. That section is reproduced below. Note that Criterion E is the final clause in the DSM definition of mental disorder. It states that a mental disorder must not solely be a result of social deviance or conflicts with society.

Mental Disorder: Separating Empirical From Conceptual Considerations

Let us begin by revisiting the conceptual basis of attributions of mental disorder. Criterion E is not, as we argued with Stein et al. (2010, 1765), conceptually necessary, but is of ethical and political importance given the historical context. Thus, notwithstanding the other criteria, a condition can only be considered for candidacy for mental disorder if “dysfunction” is present. What is a dysfunction? As Moncrieff puts it, there is a tautology in the definition of mental disorder where it is stated that a mental disorder reflects an “underlying psychobiological dysfunction” (Moncreiff 2014). Moncrieff argues that this is flawed because underlying processes have not been established, which renders the definition tantamount to saying that a dysfunction is a reflection of a dysfunction: a definition that adds nothing to our knowledge.

Here Moncrieff follows Thomas Szasz in finding a lack of resemblance to physical disorder to be the primary problem with the concept of mental disorder (see Fulford et al. 2013).1 In pursuing this, the critical psychiatrist not only fails to see the complexity of the concept of physical disorder, but also commits the same error as the biological psychiatrist. The latter implies that an ever longer awaited complete neurochemistry of mental health conditions would solve the conceptual problems. The former—the critical psychiatrist—implies the converse; that the absence of proof for the “existence of separate and distinct foundational processes,” as Moncrieff (2014) puts it, proves that mental health conditions are not disorders. As we have argued elsewhere, identifying the biological basis for a set of behaviors or symptoms does not in itself pick out what is pathological or disordered: for example, a complete description of the neurochemical states governing sexuality would not permit the inference that homosexuality is a disorder, any more than discovery of the neural correlates of falling in love or criminality would make these mental illnesses (Bingham and Banner 2012). Neurobiological changes—their presence or their absence—tells us about conditions when we find them by other means, but it does not tell us what is or is not a disorder. The same arguments could be run for underlying psychological processes. Consequently, emphasis on scientific progress or failure to progress in understanding the neurobiological correlates of mental health conditions does little to advance the conceptual debates, a point that may help to explain the impasse in the ongoing exchange between critical and biological psychiatrists.

Thus, although Moncrieff is right in pointing out that the term ‘dysfunction’ is redundant in the definition of mental disorder, she is wrong about the reason why this is so. It is not, as she claims, due to the point that no “separate and distinct foundational processes” (2014) that can ground dysfunction have been discovered empirically. After all, this leaves her open to the simple response that they actually have been, a response many biological psychiatrists do offer. The redundancy of the term ‘dysfunction’ in the definition of mental disorder is a result of conceptual analysis (and not empirical evidence), whereby it has not proven possible to define dysfunction in a way that excludes values. Here, we follow Derek Bolton in the view that once we “give up trying to conceptually locate a natural fact of the matter [dysfunction] that underlies illness attribution… then we are left trying to make the whole story run on the basis of something like ‘distress and impairment of functioning’” (2010, 332). We are left then with those things that matter in real life, the reasons that lead to healthcare being sought: usually the presence of significant distress and disability.

This is what the terms ‘dysfunction’ and ‘mental disorder’ pick out once we achieve some clarity on their referents. Stein is clearly aware of the problems inherent in defining dysfunction. However, somewhat surprisingly, the assumption that we can talk of ‘dysfunction’ over and above experienced factors (distress and disability in particular) arises through Stein’s commentary. In other words, although Stein has acknowledged the conceptual problem, in places he still writes as if there were a clear definition of dysfunction, without telling us what this would be. For example, he describes “situations when there is evidence of dysfunction, but an absence of distress and/or impairment” and gives the example of tic disorders which have no “clinical criterion (emphasizing distress and/or impairment)” (Stein 2014). We would argue that, despite the lack of explicit acknowledgement in DSM, tic disorders enter the manual because of their association with clinically significant distress and disability. It is important to avoid confusing the empirical questions (e.g., Why do people have tics? Can people have tics and not be distressed?) with the conceptual questions (e.g., When is a tic a disorder? Can tics be disorders if they do not cause distress or impairment?).

A further potential pitfall is to conflate the technical use of ‘dysfunction’ with the ordinary use of that term. This might occur where, on the one hand, we perceive a ‘dysfunction’ but on the other hand we are unable to say what the dysfunction consists of. When Moncrieff writes that dysfunction and distress are not co-extant, because, “people may neglect themselves and act in other ways that compromise their safety and survival without necessarily being distressed,” she is offering a description of behavior many would consider ‘dysfunctional’ in the lay sense (2014). Considered as a basis for conceptual analysis, however, this does not illuminate any “underlying psychobiological dysfunction”, which previous definitions aspired to do. Indeed, it is somewhat surprising that Moncrieff provides this counterexample rather than sticking to her argument that dysfunction in fact does not exist. In citing safety and survival, Moncrieff’s phrase does resemble the evolutionary theoretic approach (notably described in Wakefield’s Harmful Dysfunction Analysis), which as has been discussed widely elsewhere and noted in our paper, has fallen out of favor owing to problems with evolutionary theory specifically and naturalistic definitions in general. What of importance is left in Moncrieff’s putative definition if not underlying psychobiological and evolutionary dysfunction? We would argue: only the harm or threat of harm experienced by the individual, whether that harm is cashed out as distress and disability or as some other similar negatively evaluated experienced factor.

Response to the commentary on ‘A Critical Perspective on Second-order Empathy’: Phenomenological psychopathology must come to terms with the nature of its enterprise as a formalisation of folk-psychology (and the permeation of this enterprise with ethics)

[A response to the commentary by Jann Schlimme, Osborne Wiggins, and Michael Schwartz on my essay published in Theoretical Medicine Bioethics, April 2015 (36/2).]

In a recent polemic against certain increasingly dominant strands of phenomenological psychopathology, I launched a critique of the concept of ‘second-order’ empathy. This concept has been proposed by prominent psychopathologists and philosophers of psychiatry, including Giovanni Stanghellini, Mathew Ratcliffe, Louis Sass and others, as a sophisticated advancement over ‘ordinary’ or ‘first-order’ empathy. The authors argue that this concept allows us to refute Jaspers’ claim that certain psychopathological phenomena are un-understandable, by demonstrating that theoretical sophistication allows a ‘take’ on the these phenomena that reveals them as meaningful in the context of the person’s ‘life-world’. In my essay I argued that, given its philosophical commitments, the second-order empathic stance is incoherent, and given the constraints it places on the possibility of recognitive justice, it is unethical. The commentators take issue with both these points, to which I now respond.

First critique: ‘Psychopathology is not first philosophy’

In a succinct yet accurate summary of the first part of my argument the commentators write:

Rashed first addresses the issue of the feasibility of psychopathologists engaging in second-order empathy with persons with psychotic experiences/schizophrenia … [He] marshals textual evidence that psychopathologists can only make their case for second-order empathy by showing that it requires the performance of the Husserlian ‘phenomenological [transcendental] reduction’. Then, by citing phenomenologists such as Merleau-Ponty, as well as developing his own arguments, Rashed maintains that phenomenologists themselves do not agree that the phenomenological reduction is even possible. Assuming now that this conflicting reasoning demonstrates the impossibility of performing Husserl’s reduction, Rashed concludes that second-order empathy is impossible (because such empathy presupposes the successful performance of an impossible reduction).

Now their critique: the commentators begin by pointing out that the “‘transcendental reduction’ is designed to reach the level of a ‘transcendental consciousness’, which is the subject matter for a ‘first philosophy’ (namely, transcendental phenomenology) [that] can supply the foundation for all of knowledge”, a characterisation with which I am in agreement. I would go further and state that I consider, together with a long line of modern philosophers from Hegel to Wittgenstein, that such a project cannot work: we cannot get behind knowledge in order to establish the grounds for certainty of knowledge. As Hegel put it in his Logic, to aim to investigate knowledge prior to attempts to know the world is “to seek to know before we know [which] is as absurd as the wise resolution of Scholasticus, not to venture into the water until he had learned to swim”. The commentators then go on to state, in criticism of my essay, that psychopathology is not ‘first philosophy’. To examine, as I do, the “quarrels among phenomenological philosophers about the founding level of phenomenological inquiry” and the possibility of the transcendental reduction, is to burden psychopathology with irrelevant problems. Hence, they write, psychopathologists “can breathe a deep sigh of relief”. I suggest they hold their breath. Psychopathology is not ‘first philosophy’ – I whole heartedly agree with this statement – but in order to establish its basis and validity, phenomenological psychopathology helps itself to the entire Husserlian philosophy, and therein the problem lies.

What is psychopathology? It is a formalisation of abnormal folk psychology : it is the meticulous documentation of mental states and their connections – or lack thereof – and in this sense has no special claim to expertise on mental states except in so far as meticulous documentation can be illuminating. Put differently, psychopathology cannot overstep the soil or ground from which it arises – namely, folk psychology – and claim knowledge of the supposed ‘true’ nature of ‘abnormal’ mental states. But that is precisely what contemporary phenomenological psychopathology wants to do. It is not content with psychopathology being a formalisation of folk psychology and hence dependent on it; it wants psychopathology to be a ‘science’ that exceeds folk psychology and from which the latter can learn. In order for psychopathology to be a ‘science’ it claims a theoretical basis that is not available to folk psychology. It establishes its credentials as a ‘science’ by helping itself to the entire Husserlian philosophy: it helps itself, in particular, to the concept of the ‘transcendental reduction’ without which the proposal for ‘second-order’ empathy as a mode of philosophically articulated understanding of others would not work. (I argued this final point in detail in my essay: achieving second-order empathy requires as a first step that one suspends the natural attitude and grasps that the sense of reality with which experience is ordinarily endowed is a phenomenological achievement, a move which presupposes the possibility of the transcendental reduction.)

Shorn of its theoretical ‘transcendental’ basis, psychopathology falls back to earth as the discipline which meticulously documents mental states and their connections in accordance with the implicit rules and principles of a particular folk psychology (particular since the rules and principles in question are normative and subject to, among other things, the influence of ‘culture’). Psychopathologists may be better in this than others, but that is because they have made it their vocation, and not because they have somehow ventured beyond folk psychology. Indeed, somewhat ironically, the commentators’ own account of how understanding works proves my argument that all we’ve got is ‘first-order’ empathy, of which the qualification ‘first-order’ can now be removed as there is nothing left to contrast it with:

 Jaspers realized that, in order to apply the phenomenological method (in this less demanding sense), I first need to ‘evoke’ the perspective of the other in my own consciousness. This evocation is not some kind of (‘mysterious’) self-immersion into the other’s psyche, but a meticulous and often strenuous (and necessarily imperfect) hermeneutical reconstruction of the other’s mental life (i.e., drawing on my own experiences and elaborate narrations of the pertinent experiences in order to get a ‘feeling’ for the other’s mental life).

Indeed: empathic understanding involves a “hermeneutical reconstruction of the other’s mental life”, a reconstruction in which I draw upon “my own experiences”. It seems then that the commentators’ disagreement with the first part of my essay is not as intractable as it first appeared to be. However, the important point to reiterate is that phenomenological psychopathology faces a dilemma: either it holds fast to its basis in transcendental philosophy and hence becomes theoretically incoherent, or it abandons its pretentions to be a ‘science’ and hence, as indicated, rest content with what it is: a formalised folk psychology. In my view, given the arguments of the original essay, only the latter option is available. And contrary to what it may seem, that is not a bad position to be in; far from it. The documentation of the various states of the mind, their description and the search for connections among them, while that is a vocation that cannot exceed folk psychology, it can certainly make available for the ‘folk’ certain possibilities of human experience and belief of which they were not explicitly aware, and therein its value may lie.

Second critique: ‘Distinguishing methodological from ethical value’

 In the second part of my essay I considered the ethical dimension of the second-order empathic stance. I asked if an attitude which emphasises radical difference – as required by this stance – is the right one to hold towards persons diagnosed with schizophrenia. My answer was that it is not, but the reason why this is so is important and deserves restatement. An attitude which emphasises differences is not the right one to hold, not because such emphasis is bad in itself; I would, for example, consider an attitude which emphasises similarity as also potentially problematic. This is because the issue at stake is not the nature of the attitude, but the degree to which the persons who are at its receiving end have had a say in its construction. The reason such a consideration is normatively significant has to do with the necessity of reciprocal relations of recognition for identity formation and self-realisation. To have an academic discipline launching discourses about others cloaked in the technical jargon of phenomenological philosophy, and possessing of the prestige and authority of scholarly argument in general, is to give those others no real chance and no say in how they would like to be represented. This is not a call to ban certain words or discourses – of course not! But it is a call to appreciate that there is no ethically neutral discourse or methodology. Unfortunately this neutrality is precisely what the commentators seem to be arguing for in critique of the second part of my paper.

They begin by stating that emphasising differences is important as this may ultimately enable the psychiatrist to understand his or her patients:

On the contrary, we assert that psychopathology emphasizes difference in order to encourage the examining psychiatrist to keep on going in the attempt to understand even when such understanding seems to have ‘reached a brick wall’. Examining psychiatrists should keep on going even when they fear that they have hit a limit inherent in understanding the patient.

Now this argument seems to rest on an assumed value being attached to understanding others. They restate their point again as follows:

It is valuable to be aware of the differences of persons with psychotic experiences/schizophrenia and typically ‘‘normal’’ persons, and consequently, to persist in the task of understanding.

They go on to describe the value in question as a ‘methodological’ value and distinguish this from the “ethical value of the person with psychotic experiences/schizophrenia [which] is the same as the ethical value of the rest of us”. I admit I find such a pronouncement somewhat unusual, as it implies that our methodological approaches towards others can be disentangled from our ethical evaluations towards them as long as we insist that they are our equals. If only it was this easy.

Understanding others is not merely of ‘methodological’ value: it is ultimately a core issue in any normative moral theory, and hence much broader. The distinction drawn by the commentators between methodological and ethical value suggests that it doesn’t matter what approaches we adopt towards others as long as we are motivated by understanding them, and never lose sight of the fact that they are our equals. Once seen as a concern with how we should treat others, such a picture appears naïve. For one thing, over and the above the need to understand, lays the wishes of those we are trying to understand: they may wish to have a say in how they would like to be understood, and in the language and method which they consider more representative of who they are. All this is to say that there is no domain of human interaction that lies, as it were, beyond the ethical. Phenomenological psychopathology cannot hide behind this claim to ethical neutrality, irrespective of whether or not it is methodologically valuable.

Mohammed Abouelleil Rashed – May 2015