- 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. The Survivors’ History Group – a group founded in April 2005 and concerned with documenting the history of the movement – traces an earlier starting point. 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. 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.
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).
- 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. 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. 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. 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. 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.
- 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.
- 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). 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). 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. 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. 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.
- 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. 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).
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). 
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). 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”. 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. 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. 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. 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. 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.
- 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).
 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.
 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.
 See Peterson (1982, pp. 3-18).
 This section benefits, in part, from Crossley’s (2006, Chapter 4) account of mental hygiene.
 The history of Liberty can be found on their website: https://www.liberty-human-rights.org.uk/who-we-are/history/liberty-timeline
 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).
 For a similar point see the founding document of the Mental Patients’ Union, reprinted in Curtis et al. (2000, pp. 23-28).
 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.
 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).
 See Bluebird’s History of the Consumer/Survivor Movement. Online: https://www.power2u.org/downloads/HistoryOfTheConsumerMovement.pdf
 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.”
 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).
 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.
 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.