“I feel like I’m useful. I’m not useless, you know?”: Exploring Volunteering as Resistance to Stigma for Men Who Experience Mental Illness

Abstract

Drawing upon findings from a psycho-social study employing biographical-narrative interviews, this article examines some challenges men unable to work due to mental illness face – such as intensified stigma – and how, despite this, they resiliently continue to seek belonging and purpose. This article offers some valuable insights into the instrumentalisation of volunteering for claimants of UK social security and how and why voluntary work is valued by those who autonomously perform it. It will explore how social connections provide a tool of resistance to help marginalised individuals legitimise their identity. It is argued participants’ engagement in socially valuable activities have become increasingly insecure due to continued conditional welfare reform and the detrimental impacts of austerity.

Introduction

Since its inception in the 1940s the contemporary British welfare state has undergone persistent impetus to disincentivise out-of-work benefits. The extension to incapacity-related benefit (IRB) claimants, however, is a more present matter. The wider political ideology of neoliberalism has reframed the welfare state to include sick and disabled people in the ‘undeserving’ and highly stigmatised categorisation of social security. Based on interviews in Liverpool between Autumn 2018 and Summer 2019 with seventeen men receiving long-term IRBs due to their mental health, this article focuses on how interviewees’ voluntary work can be understood as a form of resistance to stigmatised identities. Outlining the connections and purpose community engagement provides, ‘belonging’ is proposed to be the antithesis of ‘othering’. This article explores interviewees’ experiences of voluntary work, with some commentary on motivations, their perceptions of welfare conditionality, and the lack of validation of volunteering within the neoliberal social security system.

Context

The sustained period of austerity and welfare retrenchment following the financial crisis of 2008 has led to a renewal of interest in questions of distribution and entitlement (Jeffery et al., 2018). During the last decade, government spending on local authorities has been significantly reduced and such measures have hit the poorest communities hardest (Tyler, 2020). Liverpool, where this research was conducted, is a post-industrial city in the north-west of England. Literature has documented Liverpool’s association as a working-class political city (Wilkinson et al., 2021), a city of economic and social deprivation (Kenyon et al., 2018) with high rates of unemployment and social security receipt (Lavalette, 2017).

The UK incapacity benefit system can be considered a ‘compliance-based system’: categorised by high conditionality and weak rehabilitation (Baumberg-Geiger, 2017: 112). Initially aimed at unemployed people, contractual obligations for welfare receipt since 2010 increasingly include IRB claimants. Concurrently, in popular media post-2010, sick and disabled people claiming IRBs became a ‘prime target’ for vilification with portrayals of ‘bogus’ IRB claimants (Garthwaite, 2014; Ryan, 2019). The discursive (re)construction of sick and disabled benefit claimants as undeserving through processes of social shaming and stigmatisation contextualises this research.

Tyler and Slater (2018: 727), using Goffman’s (1963) definition of stigma, describe this shifting trend as intentional ‘[state-sanctioned] stigma production’ which legitimises austerity reforms. Goffman’s (1963: 9–10) definition of stigma as ‘the situation of the individual who is disqualified from full social acceptance’ essentially transformed the concept of ‘stigma’ into a way of identifying a vast array of discriminatory social attitudes and practices. In recent years there has been a resurgence of social science interest in the concept of stigma and corresponding ‘shame and blame’ (Scambler, 2018: 771). Moving beyond an individualistic focus of stigma (Link and Phelan, 2001) there is an increased interest in how stigma is used as a political tool.

There has been an academic tradition of welfare-state focused literature examining the presence of stigma (McIntosh and Wright, 2019), often finding that benefit claimants increasingly feel they are members ‘of a problematic, threatening, even abject population’ (Patrick, 2016: 257). There is stigma related to both mental illness and welfare status, which can be experienced separately as well as intersecting. In the UK, people with severe mental illnesses are the largest group claiming working-age sickness benefits (Galloway et al., 2018) and there are growing concerns this will rise as a consequence of COVID-19 (Jia et al., 2020). Mental health has received increased government interest, and attention has now turned to the role of stigma in limiting the opportunities of people experiencing mental illness. Subsequently, removing barriers to help-seeking is the intention behind high-profile media campaigns such as Heads Together (2021) which is ‘focused on eradicating stigma as a barrier to help-seeking, through initiatives that centre on promoting individual disclosures of mental distress’ (Tyler and Slater, 2018: 722). Tyler and Slater (2018) contend that the impact of Heads Together (2021), and other anti-stigma campaigns, remains limited because there is an absence of commitments to address reduced service provision and deeper-rooted causes of mental illness and distress.

Research exploring the experiences of people who receive IRBs due to mental illness remains limited (Dwyer et al., 2020) – however, this group has been especially vulnerable to the austerity programme (O’Hara, 2014) due to real-term reductions in mental health services such as cuts to specialised services, which have exacerbated pre-existing underinvestment (Thornicroft and Docherty, 2014). Within anti-stigma campaigns such as Heads Together (2021) there is arguably an ‘acceptable’ face of male mental illness often represented by hyper-male roles including prominent sportsmen, such as ex-footballer Rio Ferdinand. The absence of representations and voices of men with complex histories of poverty, social isolation, abuse, crime and drug use linked to their mental health – in such programmes and more generally – was a key motivating force of this study. Those interviewed have a mental health condition, parallel with long-term benefit claiming, meaning they risk being confronted with multiple and competing stigmas.

Welfare stigma is understood as ‘a form of power characterised by coercion and resistance’ (Tyler, 2020: 190). Indeed, resistance is seen as a way by which stigmatised groups defend themselves against the shame which stigmatisation seeks to instil (Skeggs, 2019). Resistance is understood in this article in a similar vein to that of Scott’s (1990) conceptualisation of ‘everyday forms of resistance’ which describe ordinary practices that occur as people participate in their daily lives, how they present resistance in an unorganised and often invisible way. Scott’s (1990) concept captures a different kind of resistance, moving beyond an idea of resistance as public, intentional and self-consciously political (such as rebellions and riots) to recognise other more subtle kinds that remain less studied. Everyday resistance is about how people act in their everyday lives and suggests that resistance is ‘integrated into social life and is a part of normality’ (Vinthagen and Johansson, 2013: 3). Using this understanding, this article will explore resistance through interviewees’ commentary on motivations, milieus and perceptions of voluntary work in the context of a transforming social security system.

The study

This study was part of a wider PhD project exploring how men who claim IRBs due to mental illness are negotiating the changing social security system. Ethical approval was obtained from Edge Hill University and biographical-narrative interviews were conducted using the Free Association Narrative Interview (FANI) method (Hollway and Jefferson, 2013). Sixteen men were interviewed twice and one man was interviewed once (a total of thirty-three interviews). Stigma was not the original focus of the research; the aim was to use an interview frame which produced respondents’ narratives rather than responses to questions. The first interview was primarily biographical, with the content being participant-led to minimise researcher presumptions shaping the stories that the men produced about their lives. There was a broad topic guide indicating what needed to be covered across the two interviews (the second interview ensured all areas were addressed). The themes were generated organically from the data, alongside the researcher’s allegiances and situated knowledge.

The needs of interviewees were central throughout the process and several safeguarding protocols were in place, which were agreed with gatekeepers at each organisation who ensured all interviewees had access to support. Recruitment occurred at four different sites. Two sites were ‘day centres’, a community provision that offers (to often marginalised groups) the opportunity to meet others socially, engage in activities and access food. Thirteen of the seventeen interviewees had attended such services. The third site was a sports-based charity helping people stay physically active. The fourth was supported accommodation: a type of housing that provides higher level care and support. Participants were given options of interview location: a support organisation, university setting, or their home.

The umbrella term ‘incapacity-related benefits’ (IRBs) has been adopted specifically to capture a variety of relevant benefits, owing to the nature of the changing welfare state. At the time of their interview, thirteen men were claiming Employment Support Allowance (ESA), two were claiming Universal Credit (Limited Capability to Work), and two were claiming Personal Independence Payment (PIP). Participants’ ages ranged from twenty-eight to seventy-two, and the length of IRB claim varied between one and thirty years. Interviewees’ mental health conditions included depression, bipolar disorder and schizophrenia. In addition to their primary condition, six experienced physical health problems. The men had a range of paid employment prior to IRB receipt, which, though they included senior roles in business and social care, were predominantly unskilled labour roles. Names have been replaced with pseudonyms to protect the identities of those involved in the research. Pseudonyms are accompanied with participant ages in brackets.

Stigma in benefit processes, mental illness and service diminution

In this study there was widespread evidence of stigma being attached to the process of claiming benefits, which has been well documented by others (Chase and Walker, 2013; Patrick, 2016). Reflecting the transforming social security system, in this study stigma was frequently attributed to processes of assessment and subsequent categorisation such as Work Capability Assessments (WCA) or the migration to Universal Credit. Self-disclosing mental health problems to unfamiliar professionals, in an environment created to assess your ‘deservingness’ of benefits, was experienced as intrusive and invalidating. Bob (58) explained his experience at a WCA:

It’s embarrassing though, telling a stranger, you know, all stuff like that. At first, I was thinking, ‘I can’t tell them everything’, you know because, what if they lock me up? …It was nerve-wracking like. I was thinking, ‘woah, I’ll get locked up in a nutty home.’

Bob’s reticence illustrates how welfare-related stigma and stigma related to mental illness are often inextricably intertwined. Interviewees felt strongly that mental illness was disregarded by the social security system and that physical ailments were the central focus of processes such as interviews and assessments (see also Dwyer et al., 2020). David (53) explained the difficulties in evidencing and understanding mental illness:

For physical illnesses it’s so much easier because they’re easily understood. ‘My leg doesn’t work; I can’t walk one hundred yards’. When you say, ‘I can’t cross the road because my anxiety attacks and think you’re stuck there forever’. Well, obviously you’re not: at some point, you can cross the road, but they don’t understand an anxiety attack…

Therefore, being required to emphasise the debilitating nature of your mental illness created personal conflict for some interviewees and was described as humiliating and alienating.

Austerity in cities such as Liverpool (Kennett et al., 2015) has resulted in closures and cuts to services that offer ongoing support in community settings for people with complex needs, including mental health problems (Lavalette, 2017), which help to prevent them feeling isolated or stigmatised. Pablo (52), who had experienced depression, drug use, a custodial sentence and homelessness, recently learnt that the service he attended would be closing and commented:

It should have been funded and carried on helping the people out there and all the problems… I know they said they couldn’t get the funding and they’re not allowed to do it…You know, the Government cutbacks and all the services, it’s just going back to the Victorian days…

Such anxieties expressed by Pablo above stemmed from concerns about his peers as ‘some people go off their head because they don’t have a service going on’. They are also a reflection of the loss and isolation the closure of services cause personally: ‘it’s like with this finishing, I’ve got to live in me head now.’ Other studies with IRB claimants have found that, due to stigma from media, society and local communities, some claimants limit their interactions with their local communities and self-isolate (Weston, 2012; Shefer et al., 2016; Manji, 2017). As this study demonstrates, despite potential stigma many interviewees sought social engagement. In a sense, interviewees resisted by going out and living as everyday resistance can be understood to be something done routinely, but which is not politically articulated or formally organised (Scott, 1990). Due to closures of libraries and parks, however, there were limited free spaces to ‘just come in and be’ (Miguel, 46).

Closures and reduced community provisions contributed to the men interviewed feeling they were overlooked and their needs did not matter, which is inherently stigmatising if we are to understand stigma to describe a process which dehumanises and oppresses certain groups (Tyler, 2020). George (49), who experiences obsessive-compulsive disorder, agoraphobia, depression and anxiety, explained his apprehension at changing service provision:

They’re not funding it [previous community centre] no more [sic] and they’re starting up… trying to get you back into work and stuff but, classes like that, I can’t go to I’m not ready. It’s… too much, too full-on. I just can’t do it… there’s no like anxiety courses or things like that, it’s full-on work type sorta stuff.

In the context of an increasingly punitive welfare regime, the emphasis on employment was concerning for the men interviewed. These classes replicate courses tailored by the Department of Work and Pensions (DWP) to support people into work. Such government funding decisions symbolise motives that are focused on supporting vulnerable and potentially stigmatised groups to return to the labour market. Evidence shows, however, that services which offer long-term support for people experiencing mental health problems are more effective than those which focus almost exclusively on work-related activity (Greener and Moth, 2020), as demonstrated by George’s comment.

‘Belonging’ as resistance

In the context of eroding community settings under austerity, many vulnerable people rely on voluntary work to: avoid isolation; foster positive social connections (Patrick, 2017); and resist stigma. Ten out of seventeen men were actively engaged in volunteering during the time of interview; additionally, three other participants had temporarily stopped. Participating in community groups provided the opportunity to connect with people that understood potentially stigmatised characteristics: which included their status as ‘mentally ill’ and ‘benefit claimant’. Some described a sense of camaraderie with peers who had shared similar experiences. Others exhibited pride and recognised the importance of their role. John (41), who experiences depression and was previously alcohol-dependent and homeless, explained an interaction in his voluntary role doing street-outreach work:

…it’s a good feeling knowing that she wants help. Because I’ve been there, I’ve cried and wanted to get where I am today. I’ve seen her and what she’s going through and it’s a good feeling knowing that if we weren’t there she could be dead…

‘Othering’ has been increasingly identified in literature as a defensive strategy applied by people in poverty, whereby they emphasise the non-deservingness of an ‘other’ while, often, simultaneously defending their own entitlement to benefits (Shildrick et al., 2012; Chase and Walker, 2013; Garthwaite, 2014). In this study ‘othering’ was absent in the narratives of those who volunteered which is, perhaps, consequential of both personal experience and exposure to marginalised people through volunteering. ‘Othering’ can lead to divisions in communities (Patrick, 2017) and create an atmosphere of distrust (Saffer et al., 2018). Perhaps, the antithesis of ‘othering’ is belonging, which interviewees achieved through voluntary work and exposure to others with stigmatised characteristics. Miguel (46) opted to volunteer with refugees; he explained the role:

…you’re being a friendly face because [they] were feeling quite isolated, or recently arrived from somewhere quite troubled or they’re in the Home Office system which… once I started seeing how that goes, then I’m starting to think, ‘well, you know – there’s always people worse off than yourself’ sort of thing.

This suggests that for the men, volunteering encourages and builds upon their empathy with other groups who face stigma and oppression, creating solidarity in face of increasingly divisive politics. Rather than ‘othering’ the people they encounter, the interviewees seemed keen to strengthen other people’s sense of belonging too. Beyond their own feeling of belonging, they are countering ‘othering’ by extending community to others. The men’s personal experience with isolation and difficulties with government welfare processes led to them expressing concerns for stigmatised groups, acknowledging that media portrayals can be contentious:

It suits austerity, doesn’t it? To come out with these headlines. You’ve got the middle-class going, ‘yeah all them benefit scroungers’ and all that. These are ill people, these are disabled people, these are people with addictions, you know? (Paul, 46)

I think they try to make it look, or make people seem badder [sic], than they are. ‘A woman with six children claiming £20,000 a year on benefits!’ OK, well, she’s got six children. Give her the bloody benefits. She needs them! (Gerard, 52)

The logic of welfare stigma and processes of ‘othering’ are inherently divisive, as they categorise claimants as against ‘taxpayers’ and put the focus on a stigmatised group (i.e. benefit claimants) rather than on the unjust system with which they are struggling. In this study, the compassionate protectiveness exhibited for other marginalised people supports the idea that proximity and personal experience of disadvantage reduces the likelihood of ‘othering’ (Patrick, 2016). Furthermore, belonging, understood here in the dual sense of the men actively seeking it as volunteers and through their voluntary work, extending it to others, fosters the capacity and opportunity for benefit claimants to unify. Doing so they demonstrate the solidarity, social cohesion and force necessary to challenge government policy and rhetoric at a more everyday and interpersonal level (such as that described by Scott, 1990) rather than at a policy or explicitly political level. Tyler (2020) describes how political choices in recent decades have detrimentally impacted the most marginalised populations forcing them to mobilise to survive. The relationship between resistance and surviving under difficult conditions of everyday life has been a central theme in thinking on resistance; and resistance can be regarded as taking the form of survival tactics (Scott, 1990). Through actively rejecting divisiveness (and alternatively, consciously identifying with others with shared or different experiences) the men in this study rejected stigma. While it was not framed by the interviewees as such, the theme was identified through the narrative-capturing aspect of the FANI method.

‘Seeking purpose’ as resistance

Interviewees described gaining confidence, routine and a sense of purpose through voluntary work. Volunteering was an independent and personal decision often arising from a desire to be ‘useful’ and helped interviewees to structure their day. The interviewees maintained that this demonstrated their work ethic, and they saw little distinction between volunteering and paid employment. Their voluntary roles were discussed in terms similar to work undertaken in a professional capacity, a perspective that was informed by their participation in a range of training activities:

…the benefits of having a social life, as well as the mental health benefits of getting out each day and getting the exercise ‘cause you’re to-ing and fro-ing, yeah, I think work is a great thing… It’s a benefit, regardless of wage. That’s why I do a lot of volunteering. (Gerard, 52)

Interviewees did not construct their volunteering as a rebuttal of perceptions of themselves as lacking a neoliberal concept of industry. They did, however, advocate that despite being unable to perform paid work due to illness, they were proud of their voluntary work: which signifies a sincere rejection of stigmatising judgements on their status and their contribution to society. In common with previous studies (inter alia Garthwaite, 2014; Wright and Patrick, 2019; Tyler 2020), it was evident the homogenised stereotype of lazy, fraudulent claimants constructed in politics and media narratives masked the reality. This study found complex individuals, expending vast amounts of energy dealing with their mental illness, living in poverty and seeking to maintain social connection. The work ethic demonstrated by the men interviewed favours Patrick’s (2016) call for widening the definition of work to incorporate volunteering and other forms of community involvement.

The increased government focus on paid work neglects the vital forms of unpaid work and societal contributions being made by benefit recipients (MacDonald et al., 2014) without which the ‘formal economy would grind to a halt’ (O’Hara, 2014: 104). Engaging in voluntary work can be extremely beneficial to rebuild and strengthen social connections – however, there are limitations; and volunteering is less equal in terms of accessing social status than employment (Sage, 2018). Some found voluntary work was at times ‘quite a demoralising experience’ (Miguel, 46): for example, if an activity emerged that participants felt they were being coerced to engage in. Exploitation was reported, including claims paid staff ‘take the service users’ ideas, run with them, then claim they’re theirs…’ (Gerard, 52). Neither the policy drive for those on benefits to enter paid employment nor voluntary work are always beneficial or appropriate (Shildrick et al., 2012).

‘Autonomy’ and resistance

To be an act of resistance an action must be autonomous and not state-sanctioned. Contrary to paid formal employment, interviewees emphasised the significance of the voluntary nature of their ‘work’ and rejected ‘voluntary’ work offered by the DWP. They referred to their chosen environments as a community, which gave them a sense of shared values, autonomy and ownership of their work. Further, as the men had made the decision to engage, they could withdraw when necessary, dependent on health and other commitments.

I’ve got to be careful to watch myself, for my own health. Lots of people say to me, ‘why don’t you apply to that job? You’d be good at that job.’ I’ve said, I don’t want to do that… the work that I do, it does get noticed, and I do get rewarded for it in the best way you can, and what they can. Not monetary… (Trent, 63)

Interviewees continually expressed sentiments about the value of work alongside concerns regarding the physical or psychological limitations their health placed upon them, as previous studies have found (Garthwaite, 2014). Interviewees were not focused on making economic contributions to the labour market, but on the mutual value for their health and others. Doing so resists the neoliberal valorisation of certain kinds of economic contributions and the devaluing of others. They rejected the discursive (re)construction of benefit claimants (through processes of social stigmatisation) as ‘undeserving’ and rejected coercive measures to enter the labour market.

I’m not looking for a job. I’m not looking for a paid job, I’ve got three/four jobs that are all voluntary and I’m happy with that. I don’t want the money, I’m not interested. (David, 53)

Voluntary work is increasingly conceptualised by the DWP as a means to obtaining a job and linked to expectations of conditional benefit receipt. Unable to work due to their mental health, interviewees generated a new way of working, repurposing a space intended for capital accumulation and providing solidarity. Stigma has not worked as a deterrent to stop this group from claiming IRBs but it may begin to inhibit them from reaching out to their community in the future. Interviewees were increasingly nervous about voluntary work being used as evidence that they can fulfil the obligations of paid employment (see also Manji, 2017; Marks et al., 2017).

Unfortunately, it’s a bit of a balancing act. Obviously, you have to tell that you’re volunteering… it is a thin line between trying to get up and give back to the community you’re living in, then having the dole on your back saying, ‘well, if you’re doing that, then why aren’t you applying for this job?’ Well, simple answer is, I’m not ready for full-time work. I might look okay that day… but the day after I may not. (Gerard, 52)

Gerard’s view above reflects the realities of living with mental health problems and the impeding barriers to paid work. Interviewees did not construct their volunteering as preparation for work or a lower form of work: their roles were equal in terms of importance. What was significant in this research was that interviewees are resisting and challenging the dominant expectations of economic productivity.

Conclusion

This article has demonstrated that for the men in this study, drawing on their community through voluntary work can be seen as an act of resistance, which helps to combat the multi-layered stigma and oppressions they faced. It has argued that resistance through everyday acts of connecting with others allows interviewees to undermine powerful and stigmatising narratives related to welfare claimants and people who experience mental illness. This article sheds new light through drawing attention to acts such as ‘belonging’ and ‘seeking purpose’ through volunteering, enriching our understanding of volunteering as a form of resistance to stigma. The men interviewed sought environments where their status as unemployed and experiencing mental illness was known; in fact, this gave them a connection with others with an absence of ‘othering’. Rather than ‘othering’ the people they encounter, interviewees seemed keen to strengthen other people’s sense of belonging too; they countered ‘othering’ by extending community to ‘others’. Such insight shapes our understanding of those experiencing the increasingly punitive welfare state where (everyday) resistance (Scott, 1990) is indeed done with an intent behind it, which might be ‘to survive, solve a practical problem, fulfil immediate needs, follow a desire, or gain status among peers’ (Vinthagen and Johansson, 2013: 21). This is an under-researched area of great importance and this study hopes to help contribute to further theorising about resistance and stigmatised identities.

In this study everyday resistance was manifested in men’s attempts to retain their devalued identity through volunteering. The UK government needs to reconsider the current valorisation of paid employment and give more recognition to activities such as voluntary work and participating in community groups (Patrick, 2017) – doing so would afford some recognition to the multitudes of labour activity which occur irrespective of socio-economic relations. Fundamentally, this research stresses the need for government and policy makers to obtain a better understanding of the lives of people who are ill, and subsequently remould a fairer, non-stigmatising, more accessible welfare system. It is necessary to value the contributions that everyone makes in society, far beyond what is done for monetary gain. To achieve this, we must refocus the current philosophy from individualised dependency reduction to facilitation of collective interdependencies that support community as well as individual wellbeing.