Is there power in Mad knowledge?

This paper addresses some conceptual and organizational questions which bear on the issue of whether those designated mad can produce knowledge from, about, and beyond their experience. Ideas encapsulated in concepts such as lack of reason and epistemic justice are deployed as well as the individuation that characterizes both the clinical encounter and services generally. It is argued that these prevent such knowledge making in itself and dissipate the structures which would enable it. The paper looks at ways in which the silencing of the mad has been broken and at responses which suppress or recuperate such developments. It argues, nonetheless, that counter-narratives are being established that resist these responses. Several empirical studies provide evidence to support the argument.


Background
Can those designated mad produce knowledge from their experience?If the old dichotomy between reason and madness still obtains, if the mad-that is to say, today, those who are so-called 'severely mentally ill'-lack reason, can there nonetheless be 'mad knowledge'?And what are the power relations at work among those who claim to produce knowledge about what madness is for those who embody it?It is true that, today, many of those with diagnoses of mental illness have found a voice-in activism, advocacy, campaigning, and even in research.But is this voice still haunted by those ideas of madness as unreason, and if so with what consequences?In this paper I draw upon multiple research projects to explore this issue.In particular, I use almost fifty interviews undertaken with users and survivors in many countries in the Global North between 2018 and 2020 to explore the configurations of new knowledges produced by people labeled mentally ill and understand the power relations at stake.The full theoretical and methodological underpinnings of this research have been described elsewhere (Rose 2021).
Michel Foucault argued that, for many centuries, those deemed mad were thought incapable of producing knowledge because they lack 'reason' (Foucault 2013).Foucault argued that earlier beliefs that the voices and visions of the mad contained insights often invisible to others were gradually silenced and, as mental illness, those voices and visions were reduced to mere symptoms of a disease; silencing is a form of power.
First administratively and then medically this hegemonic discourse and the institutions which supported it crept in so long ago and so slowly that the traces of what existed before psychiatry's triumph are very hard to discern (Porter 1987(Porter , 1988)).It has been argued that Foucault's critique is out of date that his conceptualization of the mad in the Enlightenment belongs to the past, indeed belongs not just to history but is specifically French (Porter 1988;Scull 2015;Still and Velody 1992).The strong form of this argument says in addition that today the mad are not silenced, they have found a voice-in activism, advocacy, campaigning, and research (Barnes and Bowl 2001;Campbell 1985).In subsequent papers I will examine specific arenas where it is claimed that users and survivors have changed things in mental health and more widely at levels of knowledge and practice, for example, law; stigma; recovery; peer support; and user involvement in research.Nonetheless, these specific arenas did not arise to their contemporary prominence in a vacuum, but in conditions that are historical, spatial, conceptual, and in terms of power.In the present paper, I will explore the ways of organizing and of thinking that made those specific challenges possible and place them in the context of 'user-led research.'

Is it a question of 'reason'?
Foucault's arguments, whether or not one agrees with them, concerned the birth of psychiatry over 150 years ago.Much has changed, of course, the experiences and narratives of those with 'mental health problems' are prominent in popular discourse, but we hear less from those now deemed 'seriously mentally ill.'And for them, there are 'legacy terms' that resonate 'lack of capacity'; 'lack of insight'; 'cognitive deficits.'There has been no general leap to reason-that is to say, no recognition that those who are mental health service users have the capacity to understand and analyze their own situation.But there has been and continues to be a struggle between the perspectives of users and those of experts.What are the lineaments of this struggle, what sustains new survivor knowledge, and what dilutes or twists it?Not one thing, certainly.Power is important and comes in many forms; it is locally specific and situated (Haraway 1988).Power can be naked, taking the form of domination, and this manifests itself in 'mental health' systems as the legal right to withdraw liberty and subject the body and mind of the person under compulsion to practices that person resists.For some, this is the power of psychiatry.But power can be otherwise, including at the level of discourse and practice itself, when collective knowledge is ignored or dissipated and when practices borne of the struggle of survivors are 'claimed' by professionals as invented and owned by them.This 'co-option' is indeed a powerful way of defusing the radicalism of survivor generated critiques and alternatives.
A further important and more recent concept is that of 'epistemic injustice' (Fricker 2007).Articulated first in terms of the thinking of women, epistemic injustice posits that some people are not recognized as credible knowers-they can neither account for their own experience nor carve out a language in which to speak about or analyze what is happening to them and those like them.There are links in conceptualization between Foucault and Fricker-especially around the significance of ideas of lack of insight.But it is important to note that, for Fricker, this is not just a question of power or knowledge, it is one of ethics.Fricker has in the subtitle of her book the term 'ethics', to perpetrate epistemic injustice is to violate someone ethically.The idea of epistemic injustice has not generated much writing on mental health where the concentration has been on the diagnostic interview, although there is one radical paper linking epistemic injustice to 'sanism' (Hookway 2010;Leblanc & Kinsella 2016).Importantly, Fricker divides epistemic injustice into two forms.First is 'testimonial injustice' which is to say the view that a person cannot give a credible account of their own experience.Discussions of her work in the mental health field have concentrated on this, even proposing that the diagnostic interview could be cleansed of it, made more 'just.'Fricker's second form of epistemic injustice, largely ignored in the mental health literature, she terms 'hermeneutical injustice,' and this will concern me later when thinking about counter-narratives.However, epistemic injustice is one thread that shapes the power dynamic between mainstream and subjugated in the specific field of madness because it throws in constant doubt the credibility of the speakers.And hermeneutic injustice denies madness a space to articulate experience and to reflect, individually and collectively, on one's experience or more widely.
Given this background, we would expect any attempts at new knowledge and practice making by survivors to be resisted, knowingly or not.Drawing on Foucault's concept of power as multiple and mobile, we would also not expect just one form of resistance or attempts to undercut novel moves (Hook 2007;Miller and Rose 2008;Wandel 2001).I will show a number of different attempts to contain and control.But will also argue that the survivor voice is never completely silent that it spills out of the constraints imposed in different ways and in new ways.For all the attempts to suppress them, new knowledges and practices bubble up from beneath the surface and develop in their own, sometimes unexpected, ways.In other words, power as resistance can be generative.And sometimes there can be a process of resistance as reclamation, as articulated, for example, by Gone in the case of Canadian First Nation peoples (Gone 2016).
The paper will address the role of organizational forms and structures in this field.I start with the issue of 'collectives' and argue that knowledge is always collective.Many interactions and interviews with survivors demonstrate this.Addressing oppositions and relations between individual and collective may seem outmoded.So, I want to be quite precise about why collectivity is important for service users and survivors in the Global North.There is more than one factor at play but one of these is crucial.Experts-be they doctors, 'psy' professionals, priests, or educators-position us as pathological at a fundamentally individual level.Mad people are unable to think rationally, incapable of coherent speech, are anomalous; they are positioned as isolated beings (and do become so often), unable to labor, as disordered in body as well as mind.The pathologization that takes place in psychology and cognate spaces is, then, simultaneously an indvidualization of a special kind.Treatment, be it medical or psychological, acts on individual bodies, strips people of their social settings, or takes these to be, at most, marginally relevant 'context' (Jones and Brown 2012;Sampson 1989).We hear a lot about what such experts do, not so much about what they do not do.So it is perhaps not surprising, that so many people who have been pathologized in this way think they are the only person in the world who hears voices or cuts themselves or becomes energized to the point of explosion.When such individuals meet others like themselves, there can be a huge sense of relief that you are 'not alone.'I have described this in detail (Rose 2020).So, collectives or groups hold a special place for those designated mad because that designation positions us as having some deficit or disorder at a fundamentally individual level.The reverse-the group-then is both an unfamiliar space and a space of promise.Of course, mainstreams have their own organizational forms and this will turn out to be important.
Finally, what is meant by 'knowledge' in these arguments?My recent research on this issue started by focusing on user-led research.It was not confined to academic work but this was the centerpiece.Very soon, this focus was broadened and deepened.Drawing on previous survivor-led work, the research on what counts as 'knowledge' started to include, for example, activists and advocates, for they too produce embedded knowledge (Campbell and Rose 2011;Russo 2012).The research has certainly explored the production of empirical material-interviews, literature, objects, and films.But it also focused on the conceptual framing of this material.I argue that, through these processes, new knowledge is being produced.Some might ask what are your criteria for 'knowledge.'But studies in the sociology of knowledge have shown how this is not a settled question in scientific debate.In particular, many have now suggested that we need to go beyond asking this question in terms of general epistemologies to a focus on the local, the richness of context, material, and symbolic as well as on enactment (Haraway 1988;Haraway and Goodeve 2013;Meja & Stehr 2014;Nazarea 1999).I have written elsewhere about the application of these ideas to the field of survivor knowledge and practice (Rose 2022).

Structure
This paper aims to provide background to begin to explore the contexts in which new knowledges sit.It is mostly about different kinds of settings and organizations.I also use the term 'spaces' which emphasizes the symbolic aspect of settings where these struggles play out.Specifically, there are arenas like law and, seemingly very different, arenas like stigma.There is a vast literature on both, but in a subsequent paper I will attempt to draw out what is important for survivors and look at contributions they have made.Another form of power can be called 'co-option.'This is where ideas and practices arising from survivor movements are claimed by mainstreams and transformed in the process.The next paper in the series will take one example of this: the 'Recovery Approach.' There are also ethical questions and much to be said about people who belong in some way to a movement for change studying that movement itself (Gillan and Pickerill 2012).But the field of madness, of users and survivors of psychiatry, is still very contentious and discrimination abounds in some places.Those whose experience have informed my argument included high profile people and grassroots activists.Many survivors are wary of being named or otherwise identified, and in this paper I have chosen to use no verbatim quotations but gloss the words of those who contributed their testimonies and experiences.This is in the interests of anonymity.Attributes are alluded to when essential for the argument.Of course, there are losses with such a strategy, but it is necessary to protect those whose voices have contributed to the work.

User-led research
It is not possible to 'define' User-Led Research today in any simple and universally agreed way.In 2004, those who were designated 'leads' in user involvement in research funded by the National Health Service in the UK proposed a 'continuum' of involvement (Hanley et al. 2004).It looked like this: Although the continuum is no longer adhered to, 'User-Control' contained the kernel that research could be controlled by service users (not just in mental health).Additionally, it was specified that such work took place in the voluntary sector, outside the official mental health system.Otherwise, it was not clearly defined, and indeed most 'user involvement in research' today is the reverse of being usercontrolled or led although there are many exceptions (Carr et al. 2017;Clay 2005;Faulkner et al. 2021).Individual writers have focused on the explicit nature of power in user-led research and the inadequacy of dominant methods (Landry 2017;Voronka et al. 2014).
Much has changed since the first continuum was proposed and there is a large literature on 'user involvement in research.'This literature is diverse and does not add up to a coherent picture.I will explain below how this has played out in the research I discuss here, which sought to be 'user-led.'Importantly, it is necessary to recognize that the views expressed by all those interviewed were strongly inflected by the experience of distress and using or refusing mental health services.'Experience' is a tricky word as this was not, for some at least, a straightforward 'addition' of experience into the academic and other fields.Experience and research did not relate additively but synergistically, experience infused all parts of the work and, conversely, thinking about the work reflected back on experience.In this we shared the basic principles of survivor politics articulated as far back as 1978 (Chamberlin 1978).
The 'everything' that was shaped included underlying concepts (the development of what was meant by 'knowledge'; being on the receiving end of epistemic injustice); selection of participants; insider knowledge about where to find background material; and conducting interviews with peers and formulating means of analysis from the perspective of service users to respect and reflect on their perspectives.If you work from such a perspective you see and formulate things differently from a clinical or even social science standpoint (Jones and Brown 2012).And to present it as 'stages' of research overamplifies a constantly iterative approach, which brings us nicely back to ethics.In sum, this would be the backbone of user-led research for me.
But here we have the sticking points.User-led research is not just about ideas and enactments; it entails specific ways of working (Beresford and Evans 1999).At minimum, it is supposed to be democratic and empowering.Most research including the work discussed here fails to meet this aim.There is a place for discussing the back-story of research, but that conflicts with respecting anonymity and much else besides.This is of course the case with much academic work, but User-Led Research is supposed to be different.

Collectives
One key theme that clearly emerged from many research projects lay in how people talked about the nature of collectives and how they worked (Rose 2018;Rose et al. 2016).It should be noted that the phrase 'User-Led Organizations' (ULOs) has many similarities with collectives.
There was a strong sense and also feeling that 'collectives' were, or should be, non-hierarchical and supportive spaces of connectedness.Ideas of democratic practices and an 'epiphany' of belonging were widespread.There was a repeated belief that collectives were about change and that this change should be reflexive that mistakes were there to be learned from.This set of arguments was stronger for people who had been involved in these activities for long periods.But, for those more recently engaged in user activism, it had not disappeared.Some, when asked to name a 'mentor' said it was the survivor movement as such that had allowed them to reposition themselves, showing a sense that collectives reference something systemic and not just descriptive.
The concentration on minimal hierarchies, a sense of the 'we' and on change, both of self-understanding and societal structures and beliefs, all impacted knowledge generation through discussion and reflection.This was sharply highlighted in a reverse move when collectives were discovered to contain hierarchies after all, when that principle was violated.At the extreme, hierarchies in survivor collectives were based on psychiatric categories and thus replicated the knowledge and power of that system, including pathologization.
For some, any appearance of power relations questioned a commitment to equality and it came as a shock to realize that hierarchies were present when they had been denied for so long.One person interviewed made reference to Freeman's The Tyranny of Structurelessness (Freeman 1972).For them, a 'collective' was defined by the absence of hierarchies.While not always so singular, a reduction in hierarchies and what happened when they reappeared, including stasis in the goals of change, was widespread.It is important to record the strength of feeling present here because most of the interviews were not just a cognitive exercise.This bears on what knowledge constitutes; that knowledge here is not just thought.
On the other hand, one project which set out to describe the defining features of collectives found that 'a sense of belonging' was ranked lowest in terms of what is important.Instrumental features dominated, showing the literature is not uniform (Holter et al. 2004).
Some, notably those of Maori and Aboriginal heritage, tended to focus differently.Here, a community or communities were represented as interconnected, so much so that it was unremarkable.Importantly it was not that there was an absence of hierarchy, but hierarchies based on different attributes to those which preoccupied white participants.These included the wisdom of elders, non-human entities as part of society, and the status of Western ideas (McNeill 2009).For instance, 'mental illness' attracted stigma, not because of the 'illness,' but because the very category was imported from Euro-American psychiatry and so interrupted accepted ways of life.The stigma was attached to the origins of a way of thinking, not a state of being.However, more needs to be said about the effects of settler colonization on indigenous societies and I will come back to this.

Knowledge in the academy
Many of those survivors who have been part of this work, mainly but not only those who were white, had some connection to academia.Connections between survivor knowledge produced in different settings were sometimes presented as a struggle.People talked about the incommensurability of survivor priorities and those of academia, particularly clinical research (Jones and Brown 2012).The accompanying devaluing of survivor ideas was evident to those who occupied both spaces, as survivor activists and academic researchers.Sometimes in trying to 'involve' local publics, people tried a reciprocal model; we do not 'first' have academic knowledge into which survivor knowledge must fit.It could be to step outside the normative boundaries of mainstream research in the 21 st Century.This was difficult and for some the defining feature of life as an academic survivor was support, not the absence of hierarchies.Not that these are mutually exclusive.
Others with these dual positionalities often spoke about their own identity and how it was, or usually was not, that of a survivor or service user researcher at all.This again seemed influenced by their work context.There was a recognition that abiding by survivor principles often meant not living up to the norm of being an academic-in terms of day to day, but academically central, matters of grants, and papers.There was a sense of being torn between two worlds.But not all were torn and pursuing an academic career could be the goal in itself.This was rare; however, rare for there to be no sense of the 'we'; the 'we' of the other side.

Formal organization
A further issue in terms of what happened to 'collectives' is that of 'formalization'.This pertained historically to central pressure on grassroots organizations to become formally constituted and the consequent loss of informality in the group.Becoming a legally constituted entity almost always entailed instituting some hierarchical structures: Chair, Secretary, Treasurer, Board of Trustees, and so on.Although apparently legalistic requirements, these had resonances in the culture and atmosphere of the organizations.When these processes first began in the UK, in the late 1980s, people who had been detained under the Mental Health Act were barred from occupying such positions and this became another dilemma.In the face of statelevel sanction, we were obliged to prove our 'normality' (Fricker 2007).
This historical move is not inevitable.Grassroots collectives could have been left to themselves.It happened because of political changes that mandated 'involvement' of local publics.This included interaction with Authorities such as community consultation in the UK, a requirement for consumer-run Centers in the USA and representation on policy bodies in Australia, as well as participation policies for Maori in New Zealand (Clay 2005;Department of Health 1990;Gordon 2005;Hill 2004).All these initiatives were to have multiple consequences but, crucially, governments across the Western world began inviting consumers/users/survivors as well as indigenous peoples to a place at the table.What kind of place is the question?This is 'external pressure/encouragement' of a high-level sort, centralized power impacting on how groups organize and their goals.Reactions were mixed and actual practice complex but when an opportunity is presented, some at least will grasp it.And on the face of it, it did look inviting.
But it is not just that organizations were formalized, the spaces where 'involvement took place' had a set of rules of how to 'be' round that table: the hierarchies to be respected, the time-limited, structured agenda, behavioural norms such as politeness, and the turn taking that must refer in some way to the contribution that went before meant discussions had a certain form, however, apparently innovative the content.This kind of 'meeting' was congruent with certain ways of thinking: a closed way of thinking where contradictions were there to be resolved not opened out and where 'arguments' were there to be won or lost, not to be generative.Food and drink are banned while being symbols of sociality for some.Such places are not so easy for those who occupy spaces of madness and indeed that thinking is banished should it ever erupt, which begs the question of whether there is anything intrinsically valuable in other ways of thinking, mad ways of thinking, or at least in ways of organising and reflecting that give rise to ideas that are not closed, do not obey syllogistic rules?One Maori informant put this with clarity and cynicism: 'meetings' for them were alien events, which again raises questions of power as their group were not the organisers, they would never be in the context of colonization.
In a different way, and contingently, there has been an emergence in England, North America, and Australia of networks funded, driven, and with a value base that was not user-generated but controlled by policy makers and mainstream 'psy' academics.There was limited evidence of resistance to this from survivors, at least on the part of those who were invited to become involved, indeed some saw it as an opportunity.Other survivors did ignore it, perhaps presciently.One such organization was the Mental Health Research Network (MHRN) set up in England to facilitate the recruitment of participants to studies, mostly clinical trials.Some tried to make their involvement more than this to use the network as a means of progressing user involvement in mental health research nationally.The MHRN had a 'service user arm.'This never claimed to be a 'collective' although some people expected forms of mutual support that were not forthcoming.But overriding this was again the impossibility of following survivor concerns, principles, and ways of working in an organization not welcoming to this.And so the group closed (Wallcraft 2008).Wallcraft illustrates the paradox of committed survivors working in an organization with power structures that prevented the generation of any knowledge that did not fit with the concerns of the Executive.That was the legacy inherited by those working for an NGO that effectively took over the functions of the MHRN.But it too was a non-user-led space and while some thought progress could still be made it survived by a kind of doublespeak.'Putting lived experience at the heart of research,' the strapline, did not mean encouraging user researchers; it was about involving participants with 'lived experience' as subjects in studies.This is just an example but the MHRN was successful in its own terms if not those of survivors (Patterson et al. 2014).
So, we are beginning to see how mainstream organizations, in this case research infrastructure or national policies, dissipated collectives, and constrained thinking thereby putting paid to the generation of new knowledge.This is a strong version of the co-option of survivor knowledge partly because it is structural.It may even use the presence of survivors as a badge of its own legitimacy by announcing support for user engagement (Harrison and Mort 1998).

Working across groups
Whereas numerous forces undermined the promised value of collectives in these countries, one Black person who shared their experience of these issues in England acknowledged that they had never questioned their value. 1The problem for them was the progressive move of funding and support away from local, peer-led organizations to big charities that were not challenging the situation in mental health services, whereas small groups were focusing on injustices.Some of those in the USA also saw this, especially in relation to peer support and the private sector (Jones 2022).These small groups diminished as the big organizations flourished (Shaping our Lives and NSUN 2019).The result was predictable; those with clear aspirations and a commitment to social justice had the most negative reactions from the mainstream and this, additionally, could be damaging for individual well-being.
Others were more optimistic.Talking of crisis support, people from the USA particularly emphasize community but also practical aspects of support outside formal systems.Scathing about the notion that 'we are all individuals' they highlight mutual assistance embedding this in aspects of social structures that need contesting.Or that can be bypassed in the sense that communities are built outside formal services.
There was also talk of mental health grassroots collectives and ways of connecting with other marginalized groups.People do not underestimate the challengesdiscrimination exists still-but believe there are forward steps.Although methodologically weak, there is some work which supports this view that mental distress is a challenging subject to bring to communities of minoritized groups (Corrigan et al. 2003).There was often discussion of these benefits and disadvantages of different minoritized groups working together using ideas such as health equity or emphasizing the importance of finding a language in which to articulate new thinking.This links to Fricker's concept of 'hermeneutic injustice' and the possibility that one way that mad people are 'Othered' is to make it impossible for them to develop such a field of meaning or language to represent their experiences and positions.But we can see the beginnings of counter-narratives raising questions of what form and focus these would take.Indeed, the fact that most of these activists were working very locally is consistent with the notion of 'situatedness' introduced earlier (Haraway 1988; Haraway and Goodeve 2013).Mapping the configuration means a balance between attention to the local and seeing connections and differences across a field.This requires the development of higher-level concepts (Rose 2022).
Finally, and inevitably, many of those whose experiences I have drawn upon referred to 'splits' within the survivor movement.Particularly, there were views that small groups were the 'public face' of the movement, while others worked tirelessly behind the scenes, immersed in administration and including coordinating different groups as described above.There was also the question of the absence of the Black survivor movements in the thought and actions of the white movements.

Interim thoughts
The early part of this evidence led us to focus on a contrast between despondency and nostalgia for many, and an articulation of what collective organizations can achieve and can be for survivors, referencing times past mostly or by globally marginalized groups for whom Western ways of life and thinking are an intrusion, an intrusion stemming from subjugation.It seemed that, especially for those who are white, the problem lay partly in how collectives were envisioned-they had anticipated an absence of power dynamics and felt shock when they were replicated in the group.
This, at least, was a first interpretation.While not completely incorrect, it needs radical revision.Intentionally or not, what happened and is happening to user-generated knowledge and collectives in the Global North is a diffusion and misappropriation by countervailing forces.Groups did not collapse under their own weight, but were opposed or incorporated by other practices, other institutions and structures, and other knowledge.There are several examples of how professionals reconceptualized and enacted in practice, supports, and ideas that originated with user movements.These examples congeal-they are not separate.And so different practices of recuperation-of content, processes, and structures-become woven together to generate co-option multiplied and other forms of power too.Specific avenues of change to make the survivor voice heard, to break the silence, are considered in the next paper focusing on the 'Recovery Approach.'In relation to this, there is not one 'mainstream' in the Global North.Mainstreams may be the nature of participation with mental health services; they may be in medically oriented research; other places where, in one way or another, these tentacles have spread; or it may be external to any 'psy' discourse altogether but still touch the lives of those living under the description of a diagnosis or other forms of 'deviance.'

Culture is inclusion
This subheading is the title of a book by indigenous scholar Scott Avery (Avery 2018) and enables further discussion on the situation of Maori and Aboriginal participants.These inhabited a space where traditional notions of what was translated as 'well-being' were under attack by a discourse that separated mind and body and within that split did 'mind,' reason, and individuality sit.They stood at the intersection of very different ways of making sense of their experiences.So, they were not simply a (un)settled group that were disabled; their madness was a deeply contested arena itself.There was a tendency either to homogenize or to understand 'diversity' in terms of differences within the survivor terrain.However, this obscures many structural intersections which characterize this terrain, partaking of societal divisions but with its own inflections, the most obvious being the history-and present-of colonization.As Franz Fanon argued long ago, the tentacles of thoughts of the White man also colonize the minds of those who have been subject to colonial rule (Fanon 1967).In the present, this has led some to seek to escape from psychiatry altogether, or never enter it, and to concentrate instead on autonomously forging a life for themselves within their community.The intersection between 'race' and psychiatry has a very long history, while some suggest it has been consigned to the past, many argue that it still provokes ambivalence in contemporary psychiatry as to whether black and brown people can reason according to white norms of cognition (Dabashi 2015;Fanon 1967).The legacy of the Black man as violent, stereotyped in the moment of protest and Black Power and, most recently, Black Lives Matter has led to the revelation of well-established injustices in the field of psychiatry as well as policing and prison systems, exclusion from school, and the effects of structural poverty (McNeill 2009;Metzl 2010).Māori point to their over-representation in seclusion in hospitals, not the only duplication of Western settler practices here, but a duplication that intensifies the isolation of seclusion for someone used to more connected ways of living.
Consider also the pathologization of non-heteronormative identities even before some other label is applied.'Homosexuality' was a diagnostic category in DSM until 1972, but, in the view of gay service users, to suggest that this can be consigned to the past 'forgets' the legacies and traces such classifications leave behind.This was a clear finding from an ethnography of user groups focused on the UK (Rose et al. 2016).Additionally, in many Western countries transgender people are given a diagnosis by default.They have 'gender dysphoria' and must see a psychiatrist to ensure that they really do have this disorder as it is a condition of proceeding with gender-changing procedures.Fight against it and you do not really want to proceed, quite paradoxical for those who resist psychiatry (Pandya 2014).Survivor initiatives can vary quite radically in terms of these positions, vary from the majority survivor movement in the Global North, and vary within it.And yet there are constants.

Conclusion
This paper set out to provide some context, including that arising from organizational structures, which is important in itself but needs to be articulated in order that more specific ways of giving voice can be addressed.Collectives may be out of fashion and even seem politically irrelevant.But they have a specific importance for survivors of distress just because the psy disciplines and other experts position the mad as without context, without settings, and without consideration of their actual or symbolic circumstances.This is a systematic matter, one that is embedded in social structures and power relations.
This individualization is an act of power but another argument in this paper has been that power is not singular, it is multiple and spreads its tentacles both to constrain and generate.In these matters, users and survivors are not silent but it still seems that very few are listening and really listening.Survivors do make knowledge and do change things but they do not control the agenda, and as Stephen Lukes pointed out, the most power lies with those who can shape the agenda framing the issues to be debated (Lukes 2004).It is that very agenda that needs to be questioned.
So, the differences in knowledge generated by survivor groups and mainstreams can be at least partially understood by the settings in which people find themselves but also the settings they make for themselves, with others.Structures of knowledge and power as well as the situations where these are enacted make the development of new knowledge difficult but do not prevent this.Forms of organization specific to survivors can be places in which knowledge arises not only contesting the mainstream in its own terms but standing outside it completely.This can give rise to understandings that finally undo the entrenched assumption that mental distress is a matter of 'health.'Some survivors, notably Maori in our participants, are trying to resist this imposition and others are thinking beyond the edge of Western epistemology often facilitated by exempting themselves from dominant organizational forms or trying to disrupt these.The lens shifts from what psychiatry does, the familiar critique of the 'medical model,' to what psychiatry does not do.It does not listen to stories of poverty and abuse, of racism and structural violence, of colonization and dispossession, and of gendered suffering; these go unheard in auditoria where only symptoms speak and only symptoms must be muted or abolished.What psychiatry cannot hear, what policy makers must avoid, and what welfare benefits assessors get so wrong, these creates spaces for generative thinking.These spaces are different and so is the thinking.