“We’re not Speaking for Peanuts Anymore”: Problematizing the Use of Psychiatric Service User Narratives in the Neoliberal Age
Sharing stories of survival and resistance by individuals with lived experience of the psychiatric system has been essential to the history of organizing and challenging the harms caused by the mental health care system (Chamberlin, 1978; Reaume, 2002). While many institutions including universities and government health care authorities have claimed a willingness to engage with and learn from service users1, over the last several decades, service users and scholars have become increasingly critical of the conditions under which this engagement is taking place. Increasingly, universities and mental health organizations solicit stories from users and often require them to follow a similar plot. They are asked to begin with a destabilizing fall into illness and end with a heroic recovery through personal will, grit, and, of course, the aid of a benevolent healthcare system. These stories then serve several purported purposes: they help to educate students, clinicians and policy makers, and garner support from philanthropists, politicians, and the public for awareness campaigns, research and fundraising efforts (Costa et al., 2012).
Despite the potential of user narratives to disrupt harmful normative practices and the opportunity to advocate for the rights of users, such narratives are also susceptible to wider market-based ideologies that can co-opt the stories in ways that can lead these stories to potentially reinforce the oppressive structures they are intended to dismantle. In what follows, I provide a critique of the ways in which service user narratives and users themselves are restricted in their capacity for advocacy within a neoliberal society. I begin by providing a brief overview of the history of the psychiatric survivors movement (PSM) and its intent as a radical, political group. I then locate modern PSM activism within the modern social and political climate, and I delineate how discourses of psychiatry and “mental illness” are increasingly being used to support and reinforce neoliberal ideology. I then develop this critique by analyzing the recovery/resilience frameworks service user narratives are often expected to replicate, the ways in which companies co-opt user stories for their own ends, and discuss the insufficient compensatory measures and opportunities given to users to support and sustain their critical involvement in mental healthcare and research. Ultimately, I argue that while political storytelling and service user involvement is central to the reform and reimagining of the mental health care system, these practices must remain critical and politically oriented. Should survivors wish to maintain their emancipatory intention, they must find ways to resist neoliberal discourse and the tangible, material constraints this system places on them.
Narrative, Possibility, and the Psychiatric Survivors Movement
Political narratives have been fundamental to the success of several liberation movements (Neile, 2015). The reasons for this are many, but perhaps, most importantly, is that political stories help to bring an individual out of their own atomized life and connect their experience to the wider social fabric. Borrowing from Mills’ (1959) concept of the “social imagination,” to truly understand the unfolding of one’s life, a person must see their personal experience within the broader context of social structures and institutions. Developing this “imagination” calls for a reframing of agency from something entirely individual to something that is enmeshed within a web of political and economic forces (Mills, 1959). As this broad, social framing of one’s experience is not the default mode of most individuals, especially in the neoliberal age, listening to stories that highlight the social and political forces that impinge on our lives and constrain our ability to act, can be central to accurately locating mechanisms of oppression and organizing against them. Providing this social framework, political narratives can be useful tools in the process of “conscientization” or developing a critical consciousness (Freire, 1970). Freire (1970) believed that developing a critical consciousness, or awareness of the myriad forces that act on our lives, was an essential prerequisite for building solidarity within marginalized groups, and ultimately fighting for social justice. Building this critical consciousness among those marginalized by the mental health care system was the intent of the psychiatric survivors movement (PSM).
The PSM began in full thrust as a political movement in the 1970s (Chamberlin, 1978). The movement came in the wake of a significant shifts in the norms of psychiatric practice from institutionalization to community-based care (Dain, 1989). For much of the early 20th century, psychiatric “care” was conducted in large asylums that were often argued to be custodial facilities, rather than hospitals (Goffman, 1961). From the 1970s well into the 1990s, service users began sharing their stories of harm and violation within asylums and building solidarity to reform psychiatry and mental healthcare. Groups like Insane Liberation Front and the Network to Abolish Psychiatry forcefully advocated against involuntary commitments and “treatments”, including electro-convulsive therapy and insulin commas (Reaume, 2002). Users were also paramount in establishing “mad studies” a division of critical disability studies designed to challenge the assumptions of biomedical models of mental illness and the dominance of biomedically informed psychiatric care (Beresford, 2019). Importantly, service user engagement, alongside psychiatrists’ and service providers’ criticism of their own disciplines, has continued to resist an overly medicalized or individualized understanding of mental distress, and insist that suffering always be understood and located within a wider socio-political and historical context (Reaume, 2002). These scholars and activists have been instrumental in bringing to light institutional harms within the psychopharmaceutical industry (Healy, 2006), and the importance of addressing social inequalities like poverty and racism to truly address mass suffering (Costa et al., 2012).
Doubtlessly then, the PSM and its sister movements have been successful in many ways in using and sharing lived experiences within the mental health care system to advocate for users right and reinform the existing system. Nonetheless, more recently, scholars have noticed that, within institutions these individual stories have become increasingly less critical and politically oriented, and, instead, user stories and user engagement has become increasingly sanitized and romanticized to foreground individual struggle and triumph over personal illness. Far from accidental, such a sanitizing and romanticising of these stories fit well within governmental and institutional mandates to appear politically aware but the stories remain complicit with systems of oppression.
Locating ‘Mental Illness’ Discourse Within the Neoliberal Age
Central to understanding the critiques of psychiatry as a discipline is the understanding that psychiatric diagnoses are social constructs (Esposito & Perez, 2014). While the discipline relies heavily on discourses of illness, indicating a kind of biological objectivity, these “illness” categories have no material substance that can be demonstrated (i.e., biomarkers). Thus, while conceptualizing mental distress within these categories proves useful for management within healthcare institutions, it is imperative to recognize that far from purely scientific, these disorder categories are shaped by political and profit-driven forces, such as the psychopharmaceutical industry and racism (Whitaker, 2010; Metzl, 2010). Importantly, as medical diagnoses and the discourses of psychiatry become pervasive both within medicine and society more broadly, there is a tendency to view these diagnostic categories as scientific facts, divorced from social and economic contingencies that can be diagnosed and treated through supposedly value-neutral medical interventions (Esposito & Perez, 2014). Thus, cloaked in a veil of neutrality and benevolence, psychiatry has tremendous power to dictate fundamental aspects of personhood like normality/abnormality and what forms of behaviour are healthy and unhealthy, and to employ “treatments” with significant impacts, often without raising questions.
Exploring the potential harms of psychiatry’s appeal to objective science, Foucault (1972) contended that psychiatry was a form of disciplinary power, a process through which institutions create practices and techniques that ultimately serve to regulate individual behaviour in line with social norms. Talking up this mantle, Rose (1996) extends Foucault’s critique and locates the mental health system, or ‘psy-diciplines’ as agents of neoliberal ideology. Neoliberalism is an economic and political philosophy ushered in across the western world in the 1980s by conservative governments like those of Ronald Regan in the United States and Margaret Thatcher in the United Kingdom. However, far from simply being an economic philosophy, neoliberalism has been theorized as an ideology that permeates all aspects of social, cultural, and political life (Hall, 2011). Neoliberalism espouses a worldview in which all aspects of social, cultural, and economic life are shaped by a “market rationality,” that is, determining the merits of actions and values in accordance with what is deemed acceptable or desirable by the market (Esposito & Perez, 2014; Giroux 2008).
According to this logic, the market is understood as an autonomous and self-regulated entity that defines reality and therefore requires no external validation beyond its internal logic (Esposito & Perez, 2014; Giroux 2008). Within this neoliberal framework, behaviours and attitudes that align with market demands are deemed functional and rational. By contrast, a failure to integrate into market norms is often articulated as deviance or personal pathology (Esposito & Perez, 2014). Neoliberal ideology reaches its full actualization when the market becomes “the organizing principle of all political, social, and economic decisions” (Giroux, 2008, pg. 2). Thus, if mental suffering can be reconceptualized as a pathology within the individual, or the result of an insufficient moral character, the ideology successfully veils alternative explanations for this suffering, including the tax cuts, reductions in government spending, and general demolition of the social welfare state characteristic of neoliberal reform.
Acknowledging the ideological power of neoliberalism, Rose (1996) argues that psychiatry becomes complicit in the neoliberal project as it encourages individuals to understand psychic distress purely within the terms of biomedical science and individual pathology. Moreover, adopting this individualized perspective on suffering, the ‘psy-disciplines’ encourage various forms of self-regulation and self-management to ensure one’s happiness. The corollary of this perspective is that if one finds themselves unhappy, they are simply failing to enact these management techniques sufficiently or properly within their own lives. As psychological discourses increasingly permeate various social institutions including schools, prisons, and workplaces, Rose (1996) argues that individualized, psychological understandings of our selves are increasingly ubiquitous and normalized, so much so that it is difficult to understand the conditions of our lives in any other way. It is within this context that survivor narratives and engagement must be analyzed.
Recovery, Resilience, and the Privatization of Suffering
In many modern contexts like corporate awareness campaigns or government institutions, survivors are asked to make their stories conform to what has been referred to as resiliency/ recovery narratives (Howell & Voronka, 2012; Morrow, 2013). These stories take on a predictable and reproducible form: first, the individual is leading a relatively normal and productive life until they are afflicted with a terrible disease that all but destroys their lives. Then, through sheer grit, inner resilience, and the help of a committed psychiatric team (and their medications), the individual can overcome their personal adversity and return to being a functional, productive member of society (Morrow, 2013). As Howell and Voronka (2012) point out, these new recovery narratives take an uncritical stance of “recovery in” the mental health care systems, rather than the “recovery from” psychiatric intervention that characterized previous user stories. While stories of individuals overcoming adversity are not inherently problematic, it is nonetheless important to recognize how rhetoric that supports individualized pathology and recovery reifies neoliberal logic.
The push for service user narratives to fit these frameworks partially comes from institutional pressure (Voronka, 2019), and partly reflects the normative template society offers for discussing struggles with illness and adversity (Poole, 2011). Contrary to the disability pride and justice praxis that propels the CSM movement though, recovery and resilience frameworks understand mental distress as something simple and individualized, and, thus, something to be overcome through self-management (Voronka, 2019). Framing distress and recovery in this way contributes to a very particular kind of hope that is linked to entrepreneurial, goal-focused forms of subjectivity that are closely aligned with “imperatives of economic participation,” and “the ability to flourish financially” (Fisher & Lees, 2016, pg. 12). In analyzing discourses of resilience found in university student life pamphlets, Aubrecht (2012) notes that universities overly emphasize students’ capacity for resilience as an antidote to the ‘normal’ distress of university, rather than engaging with the material burdens, such as increased tuition rates, and questions of disability students contend with. Resiliency and recovery discourses place responsibility on the individual to self-govern and manage their own wellness, thus supporting neoliberal healthcare reform.
This insistence on understanding experiences of mental distress through a recovery/ resilience framework both reproduces individualized modes of understanding suffering and simplifies what are otherwise complex stories. For instance, disability scholar and service user Jijian Voronka (2019) reflecting on her speaking engagements, notes that:
We [are] often asked to frame [our stories] as isolated personal issues that arc along a progressive timeframe. We start with normalcy, interrupt with individual tragedy, mention hardships, mark interventions, until we get to a place of heroic overcoming and recovery. These story frameworks add cohesion to lives that are always far more complex.p.18
In Voronka’s case, this forced narrative in the form of a psychiatric illness and intervention arc fails to appropriately account for and attend to the complexities of being a “street-kid”. Framing her story as a contrast between her own experience and that of her brother, Michael, Voronka foregrounds how essential she feels it was to eventually qualify for a low-income, subsidized apartment in Toronto where she could finally have a “dead-bolt locked door whose key [she] held” (p.21). By contrast, her brother Michael spent his teenage years either unhoused, institutionalized (in prison), or in different transition “houses” where his rooms never had enough space to properly open the door. Michael died at the age of 21, never having had the space or shelter that Voronka cherished. Focusing on housing, rather than individual resilience or recovery, Voronka disrupts the notion that moral character or psychiatric intervention are the only relevant metrics that aid in attaining flourishing. Further, this story disrupts the idea that more than medication or other forms of psychological intervention, which Voronka found harmful, housing and security were ultimately the cornerstones of moving through her personal distress.
Not only does foregrounding individual ‘resilience’ explicitly support a neoliberal logic by reinforcing the individual as the primary agent of change, but doing so also implicitly supports this logic by erasing other social and political explanations for distress. Substantive bodies of literature exist which demonstrate that social inequalities contribute significantly to mental distress. For instance, we can point to the horrific consequences of colonialism on the mental health of Canada’s First Nations Peoples, specifically, in the cases of substance use and suicide (Barker et al., 2017; Ross et al., 2015). Further, scholars have also demonstrated the impacts of other inequalities like homelessness, poverty, racism, and sexism on creating and exacerbating mental distress (Boyer, Ku, & Shakir, 1997; Mills, 2015; Joseph, 2013). When individual grit and perseverance become a kind of moral imperative and the only metric against which the likelihood of “recovery” can be assessed, questions of social welfare are erased, and individual capacity becomes the variable sine qua non of human flourishing.
Corporate Co-opting and the Commodification of User Stories
The second portion of this critique analyzes the possibilities for user narratives to be shared in spaces that are increasingly dictated by “market-rationality,” narratives like those used in corporate awareness campaigns and government institutions. Specifically, I want to highlight some of the challenges users face to telling emancipatory and disruptive narratives when their stories are sanitized and contorted to suit normative, profit-driven ends.
User involvement has become tremendously popular in advertising campaigns like Bell Let’s Talk (Peters, 2019), and in institutions like the National Health Service (NHS) in the UK (O’Donnell et al., 2019). While such corporations and institutions are eager to display their willingness to promote user-engagement, users find that the stories these groups are interested in platforming are far from critical. Rather, these institutions represent a kind of merely performative activism, that is, a way of signaling to consumers or citizens that they share a certain set of values and a willingness to be critical while merely reproducing the status quo. Lamenting this fact, service user and academic Anne O’Donnell recalls her encounter with a representative from the NHS and a general practitioner:
Service user involvement (SUI) seemed great at first, but I soon realised that a lot of it was very conditional on saying what funders and professionals wanted to hear. One of the first things I did when I became a service user group representative was to attend a big National Health Service (NHS) event where a very senior person pounced on me, delighted to see some ‘fresh blood’, telling me she wanted to hear from real people like me, not ‘these activists’. At the same event, we were arguing for non-hospital crisis services. A general practitioner asked me what I would do when in crisis, and when I started telling him, he said “see how Anne manages it, we don’t need a crisis centre!” before even hearing me out.O’Donnell et al., 2019, p.3.
In these instances, O’Donnell’s story is not valued in its own right, nor are her perspectives as a service user meaningfully engaged. Instead, her story is co-opted and commodified to demonstrate an “allegiance” with service users, without a commitment to critique or change.
Like Anne’s experience, Brosnan (2013) interviewed service users regarding their experience working with institutions and heard very similar sentiments. Participants in this study highlighted feeling like they had little control over their story or general involvement within these organization. Instead, as one participant recounts, “[stories] are moulded to fit templates of grateful recipients of services, of taking individual responsibility, of combating stigma and opening up about suicidal thoughts to sympathetic family and professionals” (Brosnan, 2013, p.53). Worse still, in some instances service users were forced to explicitly thank police and other institutional agents to avoid disrupting existing political order (Kaiser et al., 2020). In their international, multi-site qualitative study of user experience, Kaiser et al (2020) found that institutions were only willing to share users’ stories provided certain topics like self-harm and suicide that had the potential to “make people uncomfortable” were excluded, and provided that service users spoke positively about their interactions with the mental-healthcare system. Accordingly, instead of being disruptive, in practice, user narratives can be wielded to reinforce certain forms of normative oppression they intend to disrupt.
Finally, despite purporting to want to engage users critically, these institutions do little to ensure users are fairly compensated in a way that would make their engagement sustainable. Voronka (2016) argues that service-user work represents a paradox of labor relations. While this work is intended to support individuals often excluded from the work force, service-user work remains poorly compensated (often by honorariums) and is a form of precarious labour which contributes to the fragmentation and de-skilling of the unionized health and community service workforce. For instance, there is currently one part-time post created for service users at one university in Ireland, making user research positions more precarious than postdoctoral and sessional contracts (O’Donnel et al., 2021). This precarity and poor compensation are further reflected by another service-user who recounted:
I expect[ed] to receive an honorarium for telling [my] story, instead [I] was presented with a small bag. In it, [I] found a pack of cigarettes, a pack of chewing gum and a bag of peanuts. We’re not speaking for peanuts anymoreCosta et al., 2012, p. 95
Thus, as Voronka (2016) contends, service-user work, as it is currently imagined, reinforces neoliberal norms towards low-paid, non-unionized labour. Without opportunities for secure, fair compensation, service-user participation is unlikely to be able to meaningfully critique and address the conditions of the social structures responsible for their oppression.
Conclusions and a Framework for Hope
In 2011, in Toronto, Ontario, a group of service-users, academics, activists, and health-care providers gathered to engage in an event called “Recovering Our Stories” (Costa et al., 2012). Referring to themselves as “the Collective,” this group was steadfast in their commitment to value and reimagine the possibilities for service-user engagement without reproducing the problematic recovery narratives, which are ubiquitous in the mental-healthcare sector. Firmly grounded in a radical, social-justice framework, the collective’s agenda transcends the normative biomedical frameworks of mental health, and instead “asserts the rights of ‘mad’ people without pleading for minor concessions, but instead envisions changing the world into a fit place for us to live” (Costa et al., 2012, p. 87). The event included multiple discussions tackling issues like the need for a housing-first model of healthcare, and the need to question who profits from service users’ stories? Further, the collective equipped users with specific questions to ask themselves before agreeing to offer their stories within institutions, like how are you being compensated for your work and how will this institution use your story to make material change? With promotional slogans like “Hands off our stories” and “In whose interest? How psychiatric survivors can use our stories to change the world,” the collective was able to realize a thought- provoking event with tangible benefit to users and the planning of meaningful forms of continued action.
Stories told by marginalized groups have unparalleled capacities to educate and form solidarity in ways that are essential for social justice. Nonetheless, these stories are never told in a vacuum. Over the past several decades since the user/ survivor movement has gained prominence, it has been co-opted and commodified by neoliberal logics and institutions resulting in stagnant resistance efforts and further reification of a social, political, and economic ideology that is fundamentally incompatible with human flourishing. Not only are user stories increasingly forced into frameworks of resilience and recovery that promote an individualized understanding of well-being, these frameworks also erase the relevant social and political factors that bear down on our lives. Moreover, in corporate and institutional contexts, users’ stories are sanitized to avoid meaningful critique and, instead, support a socially conscious brand for these agencies. Despite claiming to support user engagement, these institutions fail to compensate users in a way that would make their participation sustainable and able to address the oppression they intend to overturn. Moving forward, those promoting or relying on service-user engagement must find ways to contend with this neoliberal landscape and imagine new ways to share their stories to actualize the emancipatory agenda they intended to forward.
1 Throughout this paper, as in the literature, I will use a few terms to refer to individuals with lived experience of the mental health care system, including user, service user, and consumer. For my purposes, these terms are interchangeable. See Reaume, 2002 for an in-depth discussion of language use in the PSM.
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