Playing the Game: Reflections on (Intentional) Institutional Capture and Working for Mental Health Justice

Abstract

I play the game a lot. I regularly translate my mental health work into language and structures that are recognisable and friendly to the ‘powers that be’. I do it to get access, leverage, legitimacy, and funding. Often it works, but I am beginning to wonder about the costs of this translation work. I regularly find the words, action and work of the user-led movement somehow co-opted, adopted, misinterpreted and otherwise used for purposes that seem to bolster rather than challenge the status quo. I think, for example, of tokenistic co-production initiatives or sanitised and professionalised peer-support roles that have popped up over recent years. These and other similar programs seem to emanate from the demands of the user-led movement, but implement them in a way that maintains power and resources in the places they have always been. They do nothing to challenge the structures that cause mental distress in the first place. It feels similar to pink-washing or green-washing, albeit in the mental health space. I talk about it with others in the movement. I’m not sure what to call it, but I don’t want to be part of it. Sometimes, in my playing the game, I worry I might be. The aim here is to think this through, experimenting with a piece of language from my academic work. The concept I draw on is called intentional institutional capture (Eastwood, 2006). The idea comes from a feminist research methodology called institutional ethnography (IE) (Smith, 2005), which is concerned with bureaucracy and power in contemporary corporate capitalism. Briefly, institutional capture describes the subtle trickery of dominant systems and their bureaucratic processes, in which our experiences, work or just our existence are co-opted and ‘captured’ by ‘the system’ in service of its own interests. As implied by the name, intentional institutional capture is similar (Eastwood, 2006), albeit describing our deliberate participation in that ‘capture’ for our own ends—this is what I mean by ‘playing the game’. These concepts have helped me to think about the broader implications of my organising and to think about how I can ‘system proof’ my work. My reflections are rooted in my multiple positionings in relation to lived-experience work. I am a survivor researcher in the midst of their PhD, in which I use a mad and disability justice lens to explore mental health policy in the UK. I am also co-founder and executive director of Make Space (2022), a user-led collective exploring liberatory and decarceral approaches to self-harm. As the title ‘lived-experience’ implies, all my work is based on and informed by ongoing experiences of mental distress and crisis—both my own and those of others I care/have cared for. I believe in a system of mental health care rooted in autonomy, liberation and justice. I am concerned about ‘white, western cultural beliefs and frameworks’ that have ‘discouraged [us] from viewing our distress through a holistic and non-medicalised lens’ (Kaufman-Mthimkhulum, 2022). I believe in grassroots, community-led responses to distress and crisis that have the spaciousness to be creative, bold and brave outside of the demands, interests and constraints of the institution. Nevertheless, whether as a researcher, organiser or survivor, I find myself regularly interacting with ‘the system’ and organisations that do not necessarily hold the same views as me (and sometimes—oftentimes—do work that undermines them). I interact with mainstream mental health provision for two main reasons. First, because I often find there people with good intentions and a desire to do good work, who are stuck within bureaucratic processes that require them to do acts and invoke ideas I see to be harmful. Secondly, because it is behind and through ‘the mainstream’ that leverage, resources and funding are held—it is often because I am beholden to it that I must continue to participate. My participation includes work with funders, local authorities, NHS trusts, universities or even my GP. Doing so includes adopting ways of talking, acting and relating that are familiar enough to the status quo that I can access the legitimacy and intelligibility in order to get the access or resource that I need. Professionally, I often frame my user-led work to funders and institutional partners as something about safety or prevention—despite the fact that a core part of my work is challenging the utility of ‘prevention’ as a goal and dominant notions of ‘safety’ that often cause more harm than good (see: #StopSim (2022)). I also turn up to spaces I am invited to as an ‘expert-by-experience’, knowing full well that this is likely to be a tick-box exercise, still with enough (perhaps naive) enthusiasm to believe that my being there could (and sometimes does, in little ways) make changes. Tokenism, ableism, lack of power exchange and unpaid labour are well-known issues when it comes to co-production and ‘user-involvement’ in the mental health sector (e.g. Brown and Ormerod, 2020; Heney and Poleykett, 2021; Waddingham, 2021; Batty et al., 2022). Nonetheless, I turn up and often advocate for there to be more involvement opportunities—even though I know, from personal experience, that they can be harmful. I also ‘play the game’ in my own healing. I use my diagnoses to access resources, despite having a general ambivalence toward my own psychiatric diagnoses and broader concerns about how psychiatric labels are used systemically to justify harm and mistreatment of others. Not everyone gets the privilege of choosing to bring up their psychiatric diagnoses—some people, despite their best efforts, cannot shake them, often with violent and catastrophic consequences. I am lucky in this case, that among my diagnoses is not a personality disorder, which I have seen in so many instances lead to removal and refusal of care (Baker and Beazley, 2022). Moreover, not can everyone be sure that seeking help will result in any help, or that which is actually helpful, at all (Heney and Sommer, 2021). I wonder whether ‘playing the game’ is worth it. I often make small wins and meet short-term goals that I genuinely believe are helpful. I meet a lot of people working within ‘the system’ who do good work, have good intentions and are genuinely receptive to the central tenets of user-led/survivor movement. I also believe in the value of top-down as well as bottom-up change. But at the same time, it can feel as though in my playing the game, or participation in ‘the system’, I am tacitly endorsing structures, concepts and ways of working that I actively oppose. Then again, I’m not sure if it’s that straightforward. Doing this work as someone with ‘lived-experience’ work makes it feel even more complicated. Having my work bound up in my identity makes it difficult to speak, to strategize and to decide which parts of my experience to bring forward and which to leave behind (Gupta, 2022). It is also makes doing the work seem more urgent and like there is more at stake. It is what has made writing this piece far harder to write than I anticipated. When your work and activism are connected to the most vulnerable parts of yourself, ‘getting it wrong’ is more than just a bad day in the office. I began joining up my experiences of ‘playing the game’ through reflections I was having as part of my PhD, which focuses on the impact of evidence-based medicine (EBM) on mental health policymaking. Specifically, my work explores the long and controversial update process to the National Institute for Health and Care Excellence’s (NICE) Guideline on Depression in Adults—which began in 2015 and was published in its final form in June 2022. As a document that has coordinated so much of my own care, I felt/feel invested in knowing what people have to say about it. I observed how those who tried to change the depression guideline were bringing important challenges to how depression care is ordered. I also saw how these groups seemed to be being tactical in their doing so. Seeing that NICE was concerned with being ‘evidence-based’, the guidelines’ detractors framed their arguments in those terms (Rost and McPherson, 2021). They published multiple public-facing position statements, lobbied MPs and garnered support across the mental health professions—all coordinated and framed as a critique of how NICE had used, analysed or dealt with ‘evidence’. In some ways, the tactic worked. Through their concerted efforts NICE were forced to hold multiple unprecedented consultations on the guideline, creating opportunities for hundreds of organisations to comment on its content. The campaign got issues around depression into parliament and in the press. The final guideline recommended a wider range of treatments than ever before, emphasised patient choice, and acknowledged for the first-time issues that had long been a source of concern in the survivor movement such as withdrawal effects of anti-depressants and their link to suicidality (NICE, 2022). The group made important and necessary wins. At the same time, the campaign did little to challenge underlying ideological issues the mental health care—unfair distributions power, tokenistic co-production, marketisation and privatisation in health care, or limited understandings of what gets to count as ‘evidence’. On the latter point, fact, it could be argued that some of the key issues raised by the coalition exist not in spite of NICE’s use of EBM but because of it. EBM is widely critiqued both in general terms (Greenhalgh et al., 2014; Boswell, 2018; Hanemaayer, 2019) and specifically in its application to psychiatry (Gupta, 2014; Court et al., 2017). The issues raised by the guideline’s detractors included NICE’s overreliance on results from large scale trials over other methodologies, increased anti-depressant prescription, linear models of recovery and emphasis on cheap and manualised treatments such as cognitive behavioural therapy (CBT). Each of these issues have been attributed elsewhere to (at least in part) the application of evidence-based medicine to psychiatry (Dumit, 2012; Dalal, 2018; Hovda, 2019; McPherson et al., 2020). It’s a shame, because the whole process seemed to me not only a controversy around the specifics but also a struggle over broader ideas of what it means to live well, whose knowledge gets to count, and what good mental health care should or could be. These broader ideological concerns, necessary now more than ever, were in and among the coalition’s work—but hidden behind their emphasis on methods and evidence. The coalition’s tactic to frame their arguments in relatively non-controversial terms, to translate them into the institutionally friendly and recognisable language of ‘methodology’ and ‘evidence’ meant that the bigger, broader and perhaps more pressing conversations, did not happen. NICE were able to selectively attend to the issues of evidence and ignore the broader ideological and political challenges the group was bringing. EBM—the underlying structure that caused (or is at least contributory to) many of the problems outlined by the coalitionary group—remains intact and unchallenged. Perhaps, EBM is even reified by the process (McGoey, 2010). Power remains in the same place. Business as usual. In my academic work, I have been using the idea of (intentional) institutional capture (Eastwood, 2006) to think through the tactical use of ‘methods’ and ‘evidence’ as a narrative structure by those who opposed the NICE depression guideline. Increasingly, I’ve been wondering whether the concept could be helpful for my own organising. The term comes from a method called institutional ethnography (IE) (for a clear overview of IE see Murray (2022)). IE is a method that calls researchers to bring their politics to work, take sides (Cupit et al., 2021), to avoid making grand theories and instead look at people’s everyday lives and the struggles they face (Smith, 2008). In my organising I hear a lot of people talk about ‘the system’—of sanism, ableism, racism, classism and queerphobia as both systemic and structural. These -isms reside both in the thoughts and acts of ill-willed individuals but are also somehow beyond them—embedded in and joined up by the fabric of our society. The question, however, is where? Where is this system? Where do we touch it, see it, change it? Institutional ethnography suggests that ‘the system’ can be found in the invisible bureaucratic architecture of our everyday lives. It is a seemingly neutral, authorless, impenetrable, unconnected and boring deluge of paperwork, forms, manuals and guidelines that join up and coordinate the actions of numerous individuals and organisations across time and space (Smith, 2005; Murray, 2022). It is these texts that act as a kind of orchestral conductor of the social ‘system’, making sure that no matter where or who we are, we all sing from the same hymn sheet—whether we like it or not. Bureaucracy reduces the messiness and meaning of our everyday lives to a limited set of tick boxes, categories and processes. Too often, people’s personhood and protection is determined by their (in)ability to fill out forms, to meet a threshold or to qualify as this and not that—I think for example of migration status, benefit eligibility or employment rights. Often, the course of a person’s life hinge on whether they filled out a form correctly, got it into a post-box on time or remembered to check their junk folder (see: Deaths by Welfare, 2023). Psychiatry is no different. Diagnostic manuals, care plans, mental capacity, sick notes, GP letters, rating scales, codes of conduct, funding applications, impact reports, clinical trials, academic research. It’s all texts—a limited collection of thresholds, forms, categories and vocabularies that we either meet or do not meet, fall into or do not fall into, can speak or can’t. Our lives are forced into the rigid and unimaginative categories these bureaucratic structures offer us. In IE, this process is called ‘institutional capture’ (Smith, 2005, p. 119). It is what is happening when I have to squeeze my work into the boxes offered to me by a funding application, or when I have to explain my need for solitude and rest as a depression, contorted into the weirdness and inapplicability a PHQ-9. Suddenly, my life and work become translated into uncontroversial categories and cogs in a system I disagree with. But I am not always passively ‘captured’ by ‘the system’. Sometimes, I allow or work to make it to happen. We tick the right boxes, talk the talk or playing the game because we know what the system wants us to do. We do it to get resources or to get leverage. This is what I mean when I talk about ‘playing the game’. It is what I am doing when I strategically invoke my diagnoses or word my work as ‘prevention’, and it is what the detractors of the depression guideline are doing when they frame their critique of NICE’s work as one to do with evidence. This process is called intentional institutional capture (Eastwood, 2006)—when we deliberately and tactically allow ourselves to be subsumed into a system or a worldview for the purpose of playing it at its own game. But there are costs to playing the game and allowing ourselves to be captured. While we (hopefully) get short-term wins, playing the game implicitly endorses its underlying tenets—requiring us to forego the broader ideological struggle in favour of the immediate needs of any given situation. I wonder whether that’s why doing so leaves me with a funny taste in my mouth. Then again, if we refuse to play along, we lose those short-term wins—like changing a guideline, accessing mental health care or getting funding to do oppositional work. Sometimes, especially when I’m working in ‘high-risk’ situations, the short-term needs have to take precedence. This double-edge sword is the violence of bureaucracy. You lose if you play and you lose if you don’t. There has to be a way out. I don’t know how, but I wonder whether thinking about institutional capture could help. I am lucky enough to spend a lot of time around people who are doing exciting and liberatory mental health work—despite and in spite of ‘the system’. I see the permissiveness, creativity and boldness of user-led work and am consistently humbled by watching what happens when people have access to care that is truly consensual, collaborative and self-determined. As the edifice of mainstream mental health care begins to crumble (Rose et al., 2020; Moncrieff et al., 2022), it is my hope that user-led work is what takes its place. But I often wonder how we do that—how we make this kind of care ‘mainstream’ without it being co-opted, watered-down or otherwise manipulated by the system in service of maintaining the status quo. It will take deliberate organising and strategy to identify, name and get out from under the subtle trickery of a system designed for business as usual—including thinking carefully about what we win and what we lose when we decide to ‘play the game’. I wonder if the language of institutional capture—intentional or otherwise—might be helpful (Smith, 2005; Eastwood, 2006). It has helped me at least, to join up seemingly unrelated incidents and try to begin to explore how I can take wiser action in the world. The answer might not be ‘institutional capture’, but I do believe it is important to be intentional about our interactions with ‘the system’. It matters because the more time we spend translating our work into institutional language, the less time we spend developing the vocabulary required for a just future—one not about safeguarding, cost-efficiency or evidence-bases, but about justice, autonomy and liberation for all. Courtney Buckler (she/they) is a white, able-bodied, working-class, queer person. Courtney was born and raised in the south of England.