Introduction

In 2014, I was awarded a PhD in Sociology from Lancaster University. The thesis I submitted for examination explored the emergence of “recovery in/from serious mental health problems” as a conceptual frame, and as a set of practices and policy orientations. It provided an empirical account of recovery in practice in an English NHS community mental health service that I have called Create (see McWade 2015, 2016a). I used three interconnected methods: 1) I accessed the service as a service-user would do; 2) I conducted semi-structured qualitative interviews with service-users, staff members and some key stakeholders; 3) I carried out a discourse analysis of the concept of “recovery in/from serious mental health problems” in policy, research and media cultures.

Focussing on the method of accessing a mental health service as a service-user would do, I explore the different ways I have been questioned and challenged on my description of the research as autoethnographic. I select three scenes in which this questioning takes place—the NHS Research Ethics Committee (REC) hearing, my doctoral viva and my engagement with Mad Studies organising in the UK (see McWade 2016b). In each scene, I am asked to situate myself as either an insider or an outsider. I am also situated in the implicit assumptions of that invitation to explain who I am and how that matters (in that it is both important and material) in the work I am trying to do. These questions have been deeply troubling for me, but they have also been gifts. This paper marks a point in a journey in which I grapple to better articulate what I have so far attempted to do both in research and in work that creates spaces for mad knowledge and practice within academia. I return to the method of autoethnography to show my “workings out”, tracing how doing this research has developed, and continues to develop, my understanding of the use of ‘experience of mental health problems’ in social research.

I draw upon several fields of scholarship—service-user/survivor research, anthropology, mad studies, black sociology and feminist technoscience studies—all of which are concerned about the politics of knowledge production, asking: Who gets to research and who is researched? What methods produce strong research findings that contribute to social justice? What kind of research garners the most resources? In what ways might research reproduce social inequalities? I am inspired by scholars who trouble the notion that objective research methods are somehow more ethically suspect than subjective ones, refusing to accept that reflexivity is a panacea (for example, Haraway 1997), and examining how the subjectivity of the researcher materialises in practice (Blackman et al. 2008). I bring these contentions into conversation with the contemporary efforts to decolonize sociology (see for example, Bhambra 2015; Tyler 2018), which historically situate and confront the field’s canon and foundations as actively crafting the ‘techniques of racial domination’ (Ferguson cited in Tyler 2018). I extend this move into the sociology/anthropology of mental health, in an attempt to desanitize the tradition. I seek out ways of unlearning what we know and how we know mental health, refusing the concepts already available to us, asking how we might know madness differently and what methods and theories we might use in this task. The field of Mad Studies, like Black Sociology, offers us new routes that go beyond formalised academic scholarship that are rooted in a long history of mad people’s dissent, writing, political action and research.

I follow lines of connection between debates in anthropology and mental health that examine how experience and identity are deployed in research. Rather than reviewing the literature extensively, I trace these shared histories as precepts that determine the shape and findings of my research. What follows moves between disciplines, ethnographic accounts, and points in history, highlighting moments of resonance, but not asserting commensurability. Instead, I use these moments to think with the ways in which the use of experiential knowledge has been discussed and developed across time and disciplinary boundaries. I aim to counter the popular anti-identity politics argument in European theory, asserting that there are politically valid reasons for deploying the expertise of experience in social research.

Scene One: designing the research and gaining ethical approval

I designed the research with Create’s manager and the Occupational Therapist, who were both keen for me to get the experience of what it is like to be a service-user, believing that this was the only way to understand in detail what they had designed. Thus, it was proposed that I would conduct ethnographic research by accessing the service as a service-user for 6 months. However, two points of contention in my proposed method of participatory observation arose during my questioning at the NHS Research Ethics Committee (REC) review. Here, I was asked specifically about how my presence might change the experience for the “real” service-users: how would I reduce the risk that my participation might have a negative effect on the service’s therapeutic outcomes for them? Secondly, I was asked what use my accessing the service “as a service-user” was, considering I wasn’t a “real” service-user and I didn’t have mental health problems. The committee members’ questions delineate the category “service-user” as comprising people with a specific set of experiences that makes them amenable to Create’s treatment. They also assume that service-users are not PhD students or researchers, and that there is no overlap between these two categories—service-user and researcher—which is incorrect (see for example, Sweeney et al. 2009). Regretfully, due to my limited experience, I dutifully answered their questions as if they were unproblematic, reassuring the committee that there were good reasons for gathering a ‘patient’s eye view’ (Sedgwick 1982, p. 137).

To the first question, I asserted that although I may be sharing a treatment session with up to four or five other people, I would be working on my own programme of activity, so it wasn’t group work per se. This is how it was described by the manager and OT of Create: each service-user undertaking their work tailored to them, in different studio settings with different people. There are groups, but these are less important than the individual exercises and journey through the service that each person takes. In addition, the Create staff members assisting the project would ensure that I was placed in a studio with other service-users that would be able to cope with my presence (for example, I wouldn’t be placed with people who fear being watched), and everyone would know of my status as a researcher.

As to the question about my status as a “real” service-user, I explained that there was precedence for such work. Create often works with members of the public in gallery-based courses that tie in national health strategy around mental health promotion and education. I cited examples of Create leaflets designed for the public advising them on creative things they could do to improve their mental wellbeing. The dominant anti-stigma discourse—that we all have mental health, and are all at risk of experiencing mental ill-health—opened a door for me to pass through.

The committee’s concerns were allayed by this response, but I was discomforted. Mostly, I got hung up on their assumptions that I wasn’t a real service-user, because I do live with distress but have not been psychiatrised. This was a massive distraction in my writing as I tried endlessly to place myself in a complicated Venn diagram of mad, not mad, service-user, not service-user, pretending to be a service-user, researcher, and so on. As the days passed, I also felt more infuriated with the committee members’ acceptance of the research if I only observed myself. It is impractical to commit only to observing oneself when experience cannot be cleaved from its context, and at Create that context included other people. The ethical judgement made about my research aimed to protect what the committee termed “vulnerable service-users” from being observed, preserving the purity of their experiences from my non-service-user presence. This implies that the experts on the committee cannot grasp the idea of participation and observation as entangled practices. In holding subject and objects in firmly distinct epistemological categories, the result is no more ethically sound, and it is certainly not an accurate reflection of the worlds we research. Nevertheless, with these capitulations I gained access to research as a service-user would do, not as a service-user. This key distinction, recommended by the committee, tells you that I am not a “real” service-user, and that I am only allowed to consider my experience as an individual without context. To make sense of this change in methodological terms, I reached for the language of autoethnography.

(Auto)Ethnography

Autoethnography is a slippery term; in general it refers to ‘the use of personal experience to examine and/or critique cultural experience’ (Jones et al. 2015, p. 22). Although recently amassing enough publications and authors to qualify as a recognisable field, autoethnography has a longer history stretching back into the early days of Western Anthropology. Traditionally, white Western anthropologists undertook ethnographic fieldwork with remote tribes and cultures; their work was part of a wider colonial and imperial imperative to produce “objective” knowledge about the “other” in ways that reproduced white supremacy (Ahmed 2002). At the turn of the twentieth century, there is evidence of “native” anthropologists—so-called “natives” recruited and trained by white male anthropologists (such as Franz Boas) to collect more “authentic” and “representative” data about the tribes or culture they belonged to (Jones 1970). As anthropologist Jones (1970) observed, this involved exploiting “natives” as ‘potential “tools” to be used to provide important information to the “real,” white male anthropologists’ (p. 252); the native anthropologists may study their own culture, but the study of the “other” was preserved for outsiders (read white, Western, male, colonial). The native insider becomes an access point for a supposedly more penetrating outsider (white, western, male, colonial) ethnographic gaze.

During the 1960s, industrialisation, globalisation, decolonization and other geo-political and local forces displaced, absorbed or destroyed many of the tribes that most anthropologists sought to study, whilst access to the field and funding to carry out research abroad became limited (Hayano 1979, p. 99). This led to many anthropologists carrying out fieldwork at home. Concurrently, there was a rise in ‘minority and foreign anthropologists… doing ethnography in their home territories’ (ibid). Ideas about who an anthropologist could be, and who they could study, were only really shifting for white anthropologists, as non-Western researchers from outside of the US were ‘expected to study their own peoples’ (Hayano 1979, p. 101), and some were even told that they could not become an anthropologist because ‘anthropology was for outsiders’ (ibid.) From the start, then, the opportunity to study the self was racialised and continued to reproduce an oppositional hierarchical relationship between insider/outsider and researcher/researched. Insiders may well have been thought to have ‘the ability to intuit culturally significant questions and answers’ (ibid), but the real work of anthropology is preserved for the outsider researcher. If the researcher is white and Western then they are also afforded special privileges to research themselves, as an innovative and creative method borne of funding and access limitations rather than recognising the political consequences of their discipline to date.

Anthropology continued to turn in on itself, questioning its methodological roots and the politics of studying the “other”. By the 1980s and 1990s, the critique of the politics of “writing culture” is most famously exemplified in James Clifford and George E. Marcus’s (1986) edited collection Writing Culture: The Poetics and Politics of Ethnography. At this moment, the relationships of power between researcher and researched were examined in detail, and ethnography is re-inscribed as ‘always caught up in the invention, not the representation, of cultures’ (Clifford and Marcus 1986, p. 2). As part of this crisis of representation, autoethnography replaced native anthropology as the mode du jour, new literature was published on how to do it, and the work began to delineate this newly termed, but not so new, method.

Experience, enactment, embodiment

Autoethnography raises questions about how experience is conceived of as data. According to the NHS REC, collecting experiential data is deemed only to be relevant if it is in some way authentic; my experience was not deemed as authentic as I was not a “real” service-user. Unlike the REC’s questions about my status, I recognise the critical weight of these issues when they are brought into the context of service-user/survivor research. In a similar shift in mental health research to that of anthropology, a central facet of service-user/survivor activism was to become researchers rather than research subjects, asserting expertise through lived experience (see for example, Beresford 2004; Sweeney et al. 2009; Faulkner 2017; Landry 2017). This too, was predated by psychiatric patients being recruited by psychiatrists to conduct research in Victorian asylums (Chaney 2016). Whilst significant gains have been made to address the inequalities inherent in mental health research across all disciplines, the majority of studies continue to fail in this endeavour (see for example, Russo and Beresford 2015; McWade et al. 2015). As such, whilst less concerned with how the ethics committee were formulating the implications of the research, I was anxious that the project might result in further silencing of people who were tired of being spoken for and about. The question stands: How autoethnographic is my research if I am not a “real” service-user? What is the significance or use of my own experience of accessing a mental health service, if I am not an “insider”?

What do we mean when we refer to someone as a “service-user”? Feminist scholar Joan Scott (1992) argues that we should avoid accepting experiential accounts as true, authentic or factual, and rather analyse experience as constructed, relational and historically situated (see Voronka 2016 for a discussion of Scott’s work in relation to survivor research). Taking up Scott’s provocation concerning the context of experience, I adopted Annemarie Mol’s (2002) concept of enactment to trouble the singularity of the category of “service-user”. For Mol, realities are brought into being through practices. Thus, I argue that people who go to Create and participate in the treatment are enacted as service-users, and during my research this included me. During the ethics committee discussion, service-users were enacted as different from the public because of their “mental health needs”, whilst mental health strategy enacts the public as also having these needs, ultimately securing my access to the field. Importantly, this does not mean that all enactments are equal, but that different enactments can marginalise others, revealing relations of power (Moser 2008).

Accessing the service as a service-user would do allow me to explore the practices that enact service-users by being immersed in them myself. There is precedence for my approach, such as Gladys Reichard’s (1934) attempt to understand the Navajo’s culture through learning to weave the Navajo way, proposing that participating in certain practices will reveal more than just talking about them; that our knowledge about the world is embodied and we are transformed through learning, acquiring and making new knowledge. As Geertz argues, ethnography is not about mimicry or becoming “natives”, but trying to foster conversation with those we are researching with. He elaborates: ‘You don’t exactly penetrate another culture, as the masculinist image would have it. You put yourself in its way and it bodies forth and enmeshes you’ (Geertz 1996, p. 44). As Luvaas (2017) has explained, this method is a process of considerable bodily change for the autoethnographer who seeks to learn a culture by becoming a member of it, and one that is difficult to return from.

In sum, I brought together two different ideas: one that says we can methodologically centre and draw upon lived experience, the other says all experience is produced, there is no essential identity or fixed self that we can reliably draw upon to produce knowledge. I proceeded with the research holding this contradiction open and unresolved. However, after completing the fieldwork and beginning to write up my findings, I make less and less space for my own experiences. I stop writing autobiographically, and become motivated to analyse the broader political context of the service and the ways in which recovery-as-policy was deployed as part of the marketization of healthcare, the reduction of services, austerity economics and so on (see McWade 2015, 2016a). In this light, choosing to write about how attending the service had begun to open up a space for me to confront my own history of distress seemed highly indulgent.

Scene Two: the viva voce examination

On the day of the viva, I am confident that I have written something that I can defend. However, the examiners hit me with a proverbial curve ball; they challenge my assertion that this is an autoethnography. They argue that as the work presented relies upon interview data and fieldnotes, with little of my own experiences evident, this was a straightforward ethnography.Footnote 1 For at least one of the examiners, the issue of whether I was a real service-user was still important, because of the politics of representation outlined above. I feel the world slip out from under me. Not because the question was hard, or that I disagreed with their evaluations, but because I still had not attended the work of situating myself, still hung up on the (ir)relevance of my own ongoing experiences of madness and distress. What has been written out makes my body ache; as Dorothy Allison has so eloquently puts it: ‘Behind the story I tell is the one I don’t. Behind the story you heard is the one I wish I could make you hear. …behind this moment is silence, years of silence’ (1996, p. 39). During the viva I still cannot speak to this issue; I can only express what I have to say with tears.

The line of questioning has implicit expectations or assumptions about experience and identity that I do not have the language to address. The theoretical contention that experience cannot be understood without its context can also be applied here. My story is not mine alone, and because of this, I edit it (for an in-depth discussion of relational ethics see, Ellis 2007; Ryan-Flood and Gill 2009). I try and fail to explain the personal experiences that led me to the research. As Jijian Voronka notes, ‘the stories we tell are always mediated by the epistemes that proceed us’ (In Press), and I find that I can only use the language of psychiatric diagnoses to make myself and what I have been through legible. This situates me for the examiners, but I find myself displaced.

Scene Three: Mad Studies

Post-doctorate, I am drawn into the field of mad studies through organising a ‘Mad Studies’ stream, Lancaster Disability Studies Conference, Lancaster University, with Peter Beresford (McWade 2016b). I go on to collaborate with neurodivergent and mad activist scholars to hold events fore-fronting the voices of those with lived experience. Mad Studies is a small but diverse collection of activist scholarship emerging out of consumer/survivor/ex-service-user (C/S/X) movement in Canada. As part of a wider research programme, I undertake a visit to Toronto to spend time with members of this community and learn about their praxis. Mad Studies has been described as ‘a project of inquiry, knowledge production, and political action devoted to the critique and transcendence of psy-centred ways of thinking, behaving, relating, and being’ (LeFrançois et al. 2016, p. 13). The term ‘Mad’ is reclaimed as a politicised identity and reflects ‘a plurality of resistances and subversive acts against sanism’ (Diamond 2013).

Finding and becoming involved in Mad Studies is my epiphany moment (Denzin 2014). However, those questions raised in the research ethics committee and the viva about my identity and experiences continue to raise their (now familiar) heads. I find myself confessing, explaining and excusing who I am to my new survivor/service-user collaborators. As I try to situate myself I find that there are multiple identities to pick from, including but not limited to: psychiatric survivor, person with lived experience, mad-identified, mad positive (for a discussion of these different terms see: Church and Landry 2013; Jones and Kelly 2015). As I proceed, I encounter several more assumptions about who I am, some attempts to claim me as a survivor because of the work I am doing, and some that reject my involvement in Mad Studies because I do not identify as such. The demand for authenticity continues.

In this context, these questions are spoken from fear of infiltration and co-option of a hard-won space (Russo and Beresford 2015; LeFrançois et al. 2016; Beresford and Russo 2016). I take seriously the importance of creating ‘mad-owned spaces’, as the members of the Oor Mad History group described it at the ‘Mad Studies and Neurodiversity’ symposium, in Lancaster University in 2015. This strategic essentialism, using identity as basis for political participation, to take up space, and form a movement involves the radical acceptance of oneself. I do not wish to detract from that, and yet I still cannot place myself.

The classificatory politics of lived experience

A central critique of identity politics is that by participating in such processes of identification, and therefore classification, we become complicit in practices that actively (re)produce hierarchies of difference, and therefore inequalities (Brown 1993; Tyler 2015; Voronka 2016). Of particular relevance, Voronka provides a perspicacious examination of ‘how essentialized notions of lived experience [in mental health] risk effacing the material, ontological and epistemological differences among us that matter’ (2016, p. 189). For Voronka, the identity of “person with lived experience”, as a new classification in mental health research and governance, not only reproduces dominant discourse, it also universalises ‘widely heterogeneous bodies of experience together’ (2016, p. 190). Moreover, identifying oneself as a person with “lived experience” in the context of mental health research relies upon other ‘sites of privilege’ (Voronka 2016, p. 197) such as whiteness, heterosexuality and class. Rachel Gorman and her co-authors of the Mad People of Colour’s Manifesto have argued that the Mad identity is racialised: ‘the mad movement presents a mad identity based on white people’s experiences and white people’s theories’ (2013, p. 27). A recent UK symposium organised by the National Survivor User Network asked ‘Why is survivor research heteronormative and white?’ (Perry 2016), and Jayasree Kalathil and Nev Jones highlight how ‘both user/survivor research and ‘mad theory’ remain Euro-American phenomena’ (2016, p. 183). Meanwhile, Nev Jones and Timothy Kelly highlight how ‘intra-psychiatric differences’ (2015, p. 55) are not sufficiently attended to in the mad movement, marginalising the voices of those who are significantly impaired by their madness and distress.

Given these important contentions, Russo asks: ‘Do our experiences on their own guarantee that we will disrupt dominant approaches? … The task ahead of us might actually be about unlearning what we know and are used to … For me, it is becoming increasingly clear that new paradigm cannot be identity based’ (Russo 2016b). Even if we acknowledge the multiple differences incorporated within any given identity, attention must be paid to who can assume such identities, what kinds of mad knowledge that might disseminate, and what kind of work they might be expected to do given their identification. If the aim is to create new theories of madness and distress how can we know these differently, without the long-established psy epistemologies? And, if our identities are produced within psy discourse and power, how can a movement formed around that identity dismantle those power relationships?

To address these questions, I return to the history of autoethnography and native anthropology and put this in conversation with the development of survivor research and mad studies. In the first published paper specifically discussing and outlining the concept of autoethnography, David Hayano asserts that the autoethnographer must have, ‘some prior knowledge of the people, their culture and language, as well as the ability to be accepted to some degree, or to “pass” as a native member’ (Hayano 1979, p. 99); you can either belong to the group you’re researching, or you can be immersed in that group through ‘personal interests’ or ‘family connections’ (ibid.). Perhaps most importantly, autoethnographers ‘possess the qualities of often permanent self-identification with a group and full internal membership, as recognized both by themselves and the people of whom they are a part’ (Hayano 1979, p. 99); insider status may be by birth, or by interest and acquisition over time, but it must be recognised by others in that group. Here, it is who the researcher is—their group identity and identification—that determines whether the project is ethnography or autoethnography.

Hayano also emphasises that the ‘insider/outsider (or autoethnography/ethnography) dimension is best seen as a continuum rather than a rigid dichotomy’ (Hayano 1979, p. 99). This is less clear; it both matters who are you are and what you know and to which group you belong, but there is no clear distinction between those on the inside and those who are not. Nevertheless, the loosened category of autoethnography that Hayano describes continues to be inflected with racialized and colonial discourse of anthropology in which the division of labour remains untroubled between “natives” who research themselves, and outsider ethnographers who can research whatever they want. The same issue can be seen in user/survivor research, and particularly its translation in mental health services as “peer” work (Voronka 2017), or public–patient involvement (PPI) (Rose et al. 2018). Such work continues to produce ‘ethnographically detained’ (Weheliye 2014, p. 24) knowledge-producers, both absorbing and segregating mad knowledge and discourse within the academy.

Hayano’s use of ‘continuum’ interests me because this is the precise reasoning I employed to gain research ethics approval for my accessing the service as a service-user would. Whilst agreeing that I wasn’t a “real” service-user, I argued that I was nonetheless able to experience what it might be like for a service-user because, as anti-stigma and government policy discourse repeatedly claim, we all exist on a continuum of mental (ill) health. The tenet of inclusion discourse is that everyone is equal but different. However, the significant ethical and political limitations are that to be included we must first identify ourselves, and the process of identification naturalises those classifications, and obscures the multiple ways in which differences materialise in practice (e.g. in the practices of (auto)ethnographic research). Indeed, there exist numerous accounts of why and how it matters a great deal how you are marked—gendered, racialised, classed, disabled and so forth—as to what happens to you if you experience madness and distress (see for example: Metzl 2009; Daley et al. 2012).

Escaping ethnographic detainment

The injection of stories of the self into research writing is part of a history of epistemic challenges to the assumption that some people study and others are studied. However, in the context of mental health, we might question whether using stories can successfully redress inequalities in knowledge production when the story of the self is the primary diagnostic tool of the psy disciplines. Voronka (In Press) elucidates this issue sharply by detailing how her personal story is heard by health professionals, academics, researchers and social workers as a case history that tells some kind of truth of her internal world, which they have the expertise to diagnose. Despite her invitation to hear her story otherwise—that those experiences were socially and politically produced—Voronka was only met with responses that emerge from institutionalised and disciplinary ways of hearing and interpreting a mental health service-user. It is seemingly impossible for these professionals to hear Voronka in any other way.

I also found similar responses presenting versions of this paper at conferences, particularly the desire to affirm how “brave” I was for sharing personal experiences (which you will notice I don’t really do), and also an attempt to resolve the question concerning my identity once and for all. It seems one cannot ask for these phenomena to be thought of differently, without someone thinking it is a puzzle that they are able to master. Like the stories they respond to, our audiences’ engagements are also epistemically situated within a host of discursive practices concerning the investigation of human minds. As Russo has argued in relation to both psy and social science research use of patient stories, ‘[p]eople with psychiatric experience are treated as data sources. By assigning the tasks of understanding and making meaning of madness to ‘experts’ and not to those directly concerned, the great majority of narrative analyses perpetuate the role and power divisions central to psychiatric [sic] treatment’ (Russo 2016a, p. 216). Again, Voronka’s (2017) work demonstrates this clearly, in revealing how service-user (peer) researchers are called upon to tell their stories in ways that restrict their access to conduct analysis; the storyteller remains the analysand.

Writing in 1970, Jones outlined a similar problem in relation to native anthropology, which he saw as lacking non-Western theoretical foundations. The division of labour remained stuck between data collectors (natives) and intellectuals/theorists (white, Western anthropologists) developing their own ways of making sense of that data from an outsider perspective. Crucial to the project of decolonisation and desanitising knowledge production is to move away from considering experience as data to be analysed to understanding it as a means through which we collectively theorise. Experience is embodied and materialises in context; access to this theorising is both constrained and enabled through the identities and classifications that produce us as subjects. Wehilye (2014) has argued that political identity-based resistance does not need to ‘assume full, self-present, and coherent subjects working against something or someone’ (Weheliye 2014, p. 2), but can operate through a materialist conceptualisation of suffering arising in the context of political violence rather than individual wounds. Crucially, this means that to ignore embodied experience is to efface ‘alternatives modes of life alongside the violence, subjection, exploitation and racialization that define the modern human’ (2014, pp. 1–2).

Wehilye describes how Black Studies entered academia in the 1960s in the USA, but that this was pre-dated by ‘a set of intellectual traditions and liberation struggles that have borne witness to the production and maintenance of hierarchical distinctions between groups of humans’ since the eighteenth century, and as such, ‘black studies represents a substantial critique of western modernity and a sizeable archive of social, political, and cultural alternatives’ (Weheliye 2014, p. 3). He outlines how despite this, minority discourse has been segregated from white European thought ‘to the jurisdiction of ethnographic locality’ (Weheliye 2014, p. 6), whilst white European theorists are deemed translatable almost anywhere. Drawing on Sylvia Wynter’s work, he describes how since the logic of capitalist classification of humans has existed, those who are marked as not-quite-human or non-human have produced knowledge and strategies of resistance about it. Yet, when geo-political shifts provide ruptures for this work to enter the academy, such as the recruitment native anthropologists and the black and minority ethnic studies that followed, or in the case of Anglo-American survivor research when deinstitutionalisation began in earnest (Campbell 1996), this work is deemed more ethnographic data than theory precisely because of the identities of the people who produce it.

There is a further layer to this. First, before “outsider” scholarship is academically sanctioned it has already existed for some time as form of collective witnessing. Once translated into the context of the academic-industrial complex the logic of liberal individualism disconnects this knowledge from its collective and embodied origins, and reproduces inequalities around knowledge production at the very same time it attempts to theorise its way out of such political violence. Once the idea of studying oneself becomes academically sanctioned, its potential for speaking truth to power is politically neutralised as ‘outsiders imagine it to be “an anybody-can-play pick-up game performed on a wide-open, untrammelled field”’ (Ann DuCille cited in Weheliye 2014, p. 5). We see this in the history of autoethnography I present above, in a significant tranche of reflexive research accounts being labelled as autoethnographic without any explicit politicized aims (see for example, Lake 2015; Helps 2017), and it is apparent in the multiple ways I have toyed with autoethnography as a method in the study of madness as a socio-political phenomenon.

In my engagements with Mad Studies, I have learned about trailblazing work amongst the Canadian survivor community, which I describe here without asserting that these are the only examples of such work or that this only happens in Canada. Firstly, there exists a Psychiatric Survivor Archive in TorontoFootnote 2 that preserves the history of survivor organising and theorising; Danielle Landry’s work centres the importance of such archive-making (2017). Survivor and mad studies scholars have also critically analysed the ways in which stories told by members of the C/S/X community are co-opted as evidence that treatments and services on offer are effective, again depoliticising the context in which people become mad in the first place (Costa et al. 2012). Furthermore, they have directly challenged the way in which research conducted within large organisations (such as the mental health service and universities) fail to take into account psychiatric survivor research and theory, but repeatedly ask the same (incorrect) questions without effecting change (Psychiatric Disabilities Anti-violence Coalition 2015). All of these actions directly challenge the discourses of equality that inflect the inclusion politics of knowledge production in late capitalist academia. Holding this space open is very difficult to do, is significantly under-resourced, and requires a way of doing scholarship not encouraged in academic career development (see for example, Church 1995). Furthermore, when “high-knowledge crazies” (David Reville’s wonderful term) attempt to tell their stories otherwise, they are continually drawn back into a space in which already-made identity classifications occlude what madness might say if it was allowed to be heard outside of the epistemic categories that currently define it.

Conclusion

In this article, I have explored different research contexts to unpick my discomfort in both being situated and being required to situate myself within contemporary classifications of madness. In the title, I ask whether my research was autoethnographic, and I have re-visited scenes in which its naming as such was contested for different but seemingly similar reasons. My relationship to the research is complicated because it began with me and my own experiences. Why wouldn’t it? We live in a culture of the self, we avidly consume personal stories and confessions for pleasure. As I have argued recently, media cultures are infused with psy discourse; the language of diagnosis, treatment and recovery is everywhere (McWade 2018). Some of us want different words and worlds.

In attempting to make clear that I was not a “real” service-user, the NHS REC allowed me to conduct this research by only observing myself. They deemed this ethically just because it protected “vulnerable” service-users from my observations. However, as I outline, the reasons I initially gave—that we all have something called mental health—are perhaps the least just of all available ethical judgements of my research design. To forefront my experience of the service alone would be to claim that all service-users are enacted equally. Although the theory of enactment does acknowledge how all enactments are precisely not equal, it still runs the risks obscuring the differences between myself, who chose to conduct the research, and “real” service-users compelled to legislatively as part of their discharge from psychiatric detainment. Undertaking a participatory ethos to conducting the fieldwork, I attempted to ameliorate this issue by putting my embodied self into the culture of Create, sharing these experiences with the other people in that space and using them as the basis for developing dialogue within interviews.

When asked to situate myself in the context of mad studies and survivor research, I found that the term “lived experience” was most frequently given to me by those within that community. However, the limits of this category are also evident in Voronka’s critique, in which this identity, like autoethnographer, is problematically infused with racialised and sanitised privilege. At root, my research has always been about how to speak madness against or outside of discourse. Finding and connecting with mad studies and survivor collaborators has brought me closest to this goal. My research was a process of political consciousness-raising, in which I have tried unlearn what I already know. Here, I have tried harder to listen to what my body knew in each one of the three vignettes presented, focussing on moments of when words have failed me, to theorise with experience as contextualised and relational. In writing this article, I defend my decision to write myself out of my thesis because I believe it was ethically just because of who I am. My white and middle-class privilege have (in the most part) protected me from the worst state violence and its governance of madness and distress, even when my personal experiences of mental disarray have been significantly impairing. Knowing/living this has enabled me to develop a strong critique of current theories around the cause and treatment of mental health. Ironically, in order to explain why my experiences are (ir)relevant, I have had to pull myself back into the story. Therein lies the paradoxical richness of such knowledge-making; let us all avoid the compulsion to resolve it.