On the idea of Mad Culture (and a comparison with Deaf Culture)

  1. WHAT IS CULTURE?

 Part of the difficulty in making sense of the notion of Mad culture is the meaning of culture as such. The term ‘culture’ refers to a range of related concepts which are not always sufficiently distinguished from each other in various theoretical discussions. There are, at least, three concepts of culture (see Rashed 2013a and 2013b):

  • Culture as an activity: the “tending of natural growth” (Williams 1958, p. xvi); “to inhabit a town or district, to cultivate, tend, or till the land, to keep and breed animals” (Jackson 1996, p. 16); to grow bacteria in a Petri-dish; to cultivate and refine one’s artistic and intellectual capacities – to become cultured. This final meaning – culture as intellectual refinement – lives today in the Culture section of newspapers.
  • Culture as an analytic concept in the social sciences: this is the concept of culture that we find, for example, in the academic discipline of anthropology. The academic concept of culture has evolved rapidly since its introduction by Edward Tylor in the late 19th[1] Today, ‘culture’ is used to refer to socially acquired and shared symbols, meanings, and significances that structure experience, behaviour, interpretation, and social interaction; culture “orients people in their ways of feeling, thinking, and being in the world” (Jenkins and Barrett 2004, p. 5; see Rashed 2013a, p. 4). As an analytic concept it enables researchers and theoreticians to account for the specific nature of, and the differences among, social phenomena and peoples’ subjective reports of their experiences. For example, a prolonged feeling of sadness can be explained by one person as the effect of a neurochemical imbalance, by another as the effect of malevolent spirits, and by another as a test of one’s faith: these differences can be accounted for through the concept of culture. (See Risjord (2012) for an account of various models of culture in the social sciences.)

When we refer to ‘culture’ in constructions such as Mad culture and Maori culture we are not appealing to either of the two concepts of culture just outlined. For what we intend is not an activity or an analytic concept but a thing. This brings us to the third concept of culture I want to outline and the one that features in political discussions on cultural rights.

  • Culture as a noun: this is the societal concept of culture; Will Kymlicka (1995, p. 76) defines it as follows:

a culture which provides its members with meaningful ways of life across the full range of human activities, including social, educational, religious, recreational, and economic life, encompassing both public and private spheres. These cultures tend to be territorially concentrated, and based on a shared language.

Similarly, Margalit and Halbertal (1994, pp. 497-498) understand the societal concept of culture “as a comprehensive way of life”, comprehensive in the sense that it covers crucial aspects of individuals’ lives such as occupations, the nature of relationships, a common language, traditions, history, and so on. Typical examples of societal cultures include Maori, French-Canadian, Ultra-Orthodox Jewish, Nubian, and Aboriginal Canadian cultures. All these groups have previously campaigned for cultural rights within the majorities in which they exist, such as the right to engage in certain practices or to ensure the propagation of their language or to protect their way of life.

To stave off the obvious objections to this final concept of culture I point out that there is no necessary implication here that a given societal culture is fixed in time – Nubian culture can change while remaining ‘Nubian’. Neither is there an implication that all members of the community agree on what is necessary and what is contingent in the definition of their culture, or on the extent of the importance of this belief or that practice. And neither is a societal culture hermetically sealed from the outside world: “there is no watertight boundary around a culture” is the way Mary Midgley (1991, p. 83) puts it. Indeed it is because there is no hermetic seal around a societal culture that it can change, thrive, or disintegrate in light of its contact with other communities. In proceeding, then, I consider the key aspects of a societal culture to be that it is enduring (it existed long before me), shared (there many others who belong to it), and comprehensive (it provides for fundamental aspects of social life). In light of a societal culture’s appearance of independence, it can be looked upon as a ‘thing’ that one can relate to in various ways such as being part of it, alienated from it, rejected by it, or rejecting it. Can Madness constitute a culture in accordance with this concept?

2. CAN MADNESS CONSTITUTE A CULTURE? 

In the activist literature we find descriptions of elements of Mad culture, as the following excerpts indicate:

Is there such a thing as a Mad Culture? … Historically there has been a dependence on identifying Mad people only with psychiatric diagnosis, which assumes that all Mad experiences are about biology as if there wasn’t a whole wide world out there of Mad people with a wide range of experiences, stories, history, meanings, codes and ways of being with each other. Consider some of these basics when thinking about Madness and Mad experiences: We have all kinds of organized groups (political or peer) both provincially and nationally. We have produced tons and tons of stories and first person accounts of our experiences. We have courses about our Mad History. We have all kinds of art which expresses meaning – sometimes about our madness. We have our own special brand of jokes and humour. We have films produced about our experiences and interests. We have rights under law both Nationally and internationally. We have had many many parades and Mad Pride celebrations for decades now. (Costa 2015, p.4 – abridged, italics added)

As the italicised words indicate, this description of Mad culture recalls key aspects of culture: shared experiences, shared histories, codes of interaction and mutual understanding, social organisation, creative productions, cultural events. Many of these notions can be subsumed under the idea that Mad people have unique ways of looking at and experiencing the world:

Mad Culture is a celebration of the creativity of mad people, and pride in our unique way of looking at life, our internal world externalised and shared with others without shame, as a valid way of life. (Sen 2011, p.5)

When we talk about cultures, we are talking about Mad people as a people and equity-seeking group, not as an illness… As Mad people, we have unique ways of experiencing the world, making meaning, knowing and learning, developing communities, and creating cultures. These cultures are showcased and celebrated during Mad Pride (Mad Pride Hamilton).

A key component of culture is a shared language, and cultural communities are frequently identified as linguistic communities (e.g. the French-Canadians or the Inuit). A similar emphasis on language and shared understanding can also be found in accounts of Mad culture:

As Mad people we develop unique cultural practices: We use language in particular ways to identify ourselves (including the reclamation of words like crazy, mad, and nuts). We form new understandings of our experiences that differ from those of biomedical psychiatry. (deBei 2013, p. 8)

The experience of Madness produces unique behaviour and language that many Normals don’t understand but which make complete sense to many of us. (Costa 2015, p.4)

We can find a community in our shared experiences. We can find a culture in our shared creativity, our comedy and compassion. Sit in a room full of Nutters and one Normal, see how quickly the Normal is either controlling the conversation or outside of it. They do not share our understanding of the world, and here you can see evidence of our Culture, our Community. (Clare 2011, p. 16)

So, can madness constitute a culture? In the foregoing excerpts, activists certainly want to affirm this possibility. But the idea of Mad culture does not fit neatly with communities typically considered to be cultural communities. A typical cultural community, as outlined in section 1, tends to have shared language and practices, a geographic location or locations, a commitment to shared historical narrative(s), and offers for its members a comprehensive way of life. Compared to this, Mad culture appears quite atypical; for example, there is no shared language as such – references to ‘language’ in the previous quotes indicate the kind of private codes that tend to develop between friends who have known each other for many years, and not to a systematic medium of communication. People who identify as Mad, or who are diagnosed with ‘schizophrenia’ or ‘bipolar disorder’, come from all over the world and have no geographic location, no single language or a single shared history (the history of mental health activism in the English speaking world is bound to be different to that in South America). Further, Mad culture does not offer a comprehensive way of life in the same way that Aboriginal Canadian culture may. Mad people can and do form communities of course – Mad Pride and similar associations are a case in point – the question here, however, is whether these can be considered cultural communities.

Perhaps Quebeckers and Maoris are not suitable comparisons to Mad culture. Another community to examine, and which may be more analogous in so far as it also continues to fight medicalisation and disqualification, is Deaf culture. On visiting Gallaudet University in 1986 – a university for the education of deaf students – Oliver Sacks (1989, p. 127) remarked upon “an astonishing and moving experience”:

 I had never before seen an entire community of the deaf, nor had I quite realized (even though I knew this theoretically) that Sign might indeed be a complete language – a language equally suitable for making love or speeches, for flirtation or mathematics. I had to see philosophy and chemistry classes in Sign; I had to see the absolutely silent mathematics department at work; to see deaf bards, Sign poetry, on the campus, and the range and depth of the Gallaudet theatre; I had to see the wonderful social scene in the student bar, with hands flying in all directions as a hundred separate conversations proceeded – I had to see all this for myself before I could be moved from my previous “medical” view of deafness (as a “condition,” a deficit, that had to be treated) to a “cultural” view of the deaf as forming a community with a complete language and culture of its own.

In Sacks’ account, Sign language appears as a central component of Deaf culture – the core from which other cultural practices and attitudes arise. The centrality of Sign to the Deaf community is confirmed through a perusal of writings on Deaf culture: the World Federation of the Deaf describes Deaf people as “a linguistic minority” who have “a common experience of life” manifesting in “Deaf culture”.[2] Acceptance of a deaf person into the Deaf community, they continue, “is strongly linked to competence in a signed language”. In Inside Deaf Culture, Padden and Humphries (2005, p. 1) note that even though the Deaf community does not possess typical markers of culture – religion, geographical space, clothing, diet – they do possess sign language(s), which play a “central role … in the everyday lives of the community”. The British Deaf Association remarks upon Deaf people as a linguistic minority who have a “unique culture” evident in their history, tradition of visual story-telling, and the “flourishing of BSL in a range of art forms including drama, poetry, comedy and satire”.[3] Similarly, the Canadian Cultural Society of the Deaf and the American non-profit organisation Hands & Voices both describe Sign language as the core of Deaf cultural communities.[4] Sign language is central to Deaf culture and is the crux around which a sense of community can arise. This community fosters awareness of being Deaf as a positive and not a deficit state; the deaf person is frequently described as the Seeing person (distinct from the Hearing person), emphasising the visual nature of Sign language and Deaf communication.[5] Deaf culture is also supported by the existence of institutions dedicated for Deaf people such as schools, clubs, and churches. Finally, as a consequence of living in a world not always designed for them, and in the process of campaigning for their rights and the protection of their culture, Deaf people develop a sense of community and solidarity.

Even though Deaf culture differs from typical cultural communities, in its most developed form it does approach the ideal of offering its members “meaningful ways of life” across key human activities (Kymlicka 1995, p. 76). It may not be a comprehensive culture in the way that Ultra-Orthodox Jewish culture is, but its central importance to the life of some deaf people – arising in particular from learning and expressing oneself in Sign – suggests that it can be viewed as a cultural community.

If we compare Mad culture to Deaf culture we find many points of similarity. For example, like Deaf people, people who identify as Mad – at least in the English-speaking world – are united by a set of connected historical narratives, by opposition to ‘sanism’ and psychiatric coercion, and by phenomenologically related experiences (such as voices, unusual beliefs, and extremes of mood).[6] In addition, they share a tradition of producing distinctive art and literature and a concern with transforming negative perceptions in society surrounding mental health. But Mad people, unlike Deaf people, are not a linguistic community, and this does weaken the coherence of the idea that madness can constitute a culture. An alternative is to regard Mad people as forming associations within the broader cultural context in which they live, the very context they are trying to transform in such a way that allows them a better chance to thrive.

The comparisons drawn in this section cannot be the final word, as it is conceivable for different conceptions of societal culture and Mad culture to yield different conclusions. However, in what follows I shall argue that even if madness can constitute a culture, a consideration of the general justification for cultural rights leads us to social identity and not directly to culture as the key issue at stake.

 

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] In Primitive Culture, Edward Tylor (1891, p. 1) provided the following definition: “culture or civilisation .. is that complex whole which includes knowledge, belief, art, morals, law, custom, and any other capabilities and habits acquired by man as a member of a society”.

[2] Online: https://wfdeaf.org/our-work/focus-areas/deaf-culture

[3] British Sign Language. Online: https://www.bda.org.uk/what-is-deaf-culture

[4] Online: http://www.deafculturecentre.ca/Public/Default.aspx?I=294. http://www.handsandvoices.org/comcon/articles/deafculture.htm

[5] Online: http://www.handsandvoices.org/comcon/articles/deafculture.htm

[6] Sanism: discrimination and prejudice against people perceived to have, or labelled as having, a mental disorder. The equivalent term in disability activism is ableism.

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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

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.

Mad Activism and Mental Health Practice

On the 6th of August 2018 I delivered a live webinar that was part of a Mad Studies series organised by Mad in America. The aim of the webinar was to explore ways of incroporating ideas from Mad activism into clinical practice. The full recording of the webinar and the accompanying slides can be found below.

 

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

 

Madness & the Demand for Recognition

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After four years of (almost) continuous work, I have finally completed my book:

Madness and the Demand for Recognition: A Philosophical Inquiry into Identity and Mental Health Activism.

You can find the book at the Oxford University Press website and at Amazon.com. A preview with the table of contents, foreword, preface, and introduction is here.

Madness is a complex and contested term. Through time and across cultures it has acquired many formulations: for some, madness is synonymous with unreason and violence, for others with creativity and subversion, elsewhere it is associated with spirits and spirituality. Among the different formulations, there is one in particular that has taken hold so deeply and systematically that it has become the default view in many communities around the world: the idea that madness is a disorder of the mind.

Contemporary developments in mental health activism pose a radical challenge to psychiatric and societal understandings of madness. Mad Pride and mad-positive activism reject the language of mental ‘illness’ and ‘disorder’, reclaim the term ‘mad’, and reverse its negative connotations. Activists seek cultural change in the way madness is viewed, and demand recognition of madness as grounds for identity. But can madness constitute such grounds? Is it possible to reconcile delusions, passivity phenomena, and the discontinuity of self often seen in mental health conditions with the requirements for identity formation presupposed by the theory of recognition? How should society respond?

Guided by these questions, this book is the first comprehensive philosophical examination of the claims and demands of Mad activism. Locating itself in the philosophy of psychiatry, Mad studies, and activist literatures, the book develops a rich theoretical framework for understanding, justifying, and responding to Mad activism’s demand for recognition.

 

Response to Order/Disorder, Kai Syng Tan’s UCL Institute of Advanced Studies Talking Points Seminar

5th December 2017

Title of seminar:

Order/Disorder – The artist-researcher as connector-disrupter-running messenger? 

by Dr Kai Syng Tan

My response:

Thank you very much for inviting me today.

I was pleased when I received this invitation, not only because it meant I can return to the IAS where I spent a year a couple of years ago, but because Kai’s work is hugely important, as well as being relevant to my work in philosophy and psychiatry.

For too long there has been a gap between, on one hand, social and professional understandings of mental health conditions and, on the other, individuals’ own understanding of their experiences and situation. There wasn’t much of a conversation going on, or if there was, it was framed in terms that emphasise disorder and deficit.

For some time, activism in mental health has been trying to change this, by demanding that people are heard on their own terms.

But then how do we bridge this gap, how do we create the possibility for generating shared understandings of the various mental health conditions? Just what do we to do? Well, we do what Kai is doing: inventive projects that bring people together, engage them in creative activities that unsettle some of their assumptions and broaden their  understanding, perhaps even their sense of empathy. For this kind of progress, it is not sufficient to give people information; they need to have an experience, and as I see it, Kai’s work provides both. 

*

There is a point I would like to make and to have your opinion on: it has to do with the distinction between order and disorder.

I came to this distinction first as a doctor and then as a researcher in philosophy and psychiatry. In philosophy, the concept of mental disorder has been the subject of many search and destroy as well as rescue missions over the past twenty-five years.

The key point of contention was whether or not we can define disorder (or more precisely, dysfunction) in purely factual terms, for instance as the breakdown of the natural functions of psychological mechanisms. The goal in such attempts was to define dysfunction in terms that do not involve value-judgements.

These attempts were not successful: at some point in the process of describing the relevant mechanisms and their functions, value-judgements sneak in.

Now demonstrating the value-ladenness of the concept of disorder does not mean that it suddenly disappears; and it does not mean that the boundary between order and disorder vanishes into thin air. It just means that it has become a much more controversial boundary than previously thought, and the distinctions it involves are difficult ones to make.

My point is that making qualitative distinctions among behaviours and experiences – whether our own or other people’s – is not optional: it is part of how we understand ourselves and understand others as psychological and social beings. 

That being said: even if the distinction between order and disorder – or between whatever terms you wish to use – even if that distinction is inevitable, it is one that we continually ought to attempt to transcend.

 Why should we attempt to overcome it? Because there might be order in what appears to be disorder, and disorder in what appears to be order; because in attempting to transcend this distinction we can grasp what it is that we share with others and not just what sets us apart; and because there’s no telling on which side of that distinction any of us is going to fall one day.

 It is precisely this paradox that we need to be conscious off and work with: the paradox of accepting the inevitability of a distinction while at the very same time seeking to transcend it. And I wonder what you think of this?

*

The other point I want to make has to do with the relation between our research and the activism that is connected to it. I must admit that in my own work I’ve frequently thought about this but I have not yet arrived at a satisfactory view. The question of course is broader than our area of research and applies to the humanities in general: to what extent should a researcher commit to the social cause they are researching, and what does this mean for the objectivity of what they are producing. What kind of balance do we need to strike here? And have you thought about this in your work?