What does work mean to people socially defined by their inability to work? This article explores "work" in Psychosocial Clubhouses, strengths-based programs for people experiencing psychiatric disability, where members – not clients or patients – work at operating their clubhouse alongside staff. I draw upon three years of experience in a Michigan clubhouse, as a volunteer, social work intern, and ethnographer. I explore the meaning of work – defined as "purposeful activity that builds community," challenging the narrow neoliberal definition of work as "paid employment" – from the perspective of clubhouse members. In the clubhouse, "dis-ability" becomes a misnomer, as members demonstrate remarkable "ability" within the clubhouse's work environment. Interestingly, this work environment demands close, authentic relationships between members and staff, which dismantle conventional hierarchies between professionals and clients in mental health programs. In this work environment, members come to feel needed and valued, countering common feelings associated with psychiatric disability such as dependence and a lack of self-efficacy. Through developing a sense of purpose and community – arguably human needs – many members are able to live self-defined meaningful lives, in spite of their marginalized social position.
On Work
You work that you may keep pace with the earth and the soul of the earth.
For to be idle is to become a stranger unto the seasons, and to step out of life's procession,
that marches in majesty and proud submission towards the infinite.
…
Always you have been told that work is a curse and labour a misfortune.
But I say to you that when you work you fulfil a part of earth's furthest dream, assigned to you when that dream was born,
And in keeping yourself with labour you are in truth loving life,
And to love life through labour is to be intimate with life's inmost secret.
…
You have been told also that life is darkness, and in your weariness you echo what was said by the weary.
And I say that life is indeed darkness save when there is urge,
And all urge is blind save when there is knowledge,
And all knowledge is vain save when there is work,
And all work is empty save when there is love;
And when you work with love you bind yourself to yourself, and to one another, and to God.
…
Often have I heard you say, as if speaking in sleep, 'He who works in marble, and finds the shape of his own soul in the stone, is nobler than he who ploughs the soil.
And he who seizes the rainbow to lay it on a cloth in the likeness of man, is more than he who makes the sandals for our feet.'
But I say, not in sleep but in the overwakefulness of noontide, that the wind speaks not more sweetly to the giant oaks than to the least of all the blades of grass;
…
Work is love made visible.
And if you cannot work with love but only with distaste, it is better that you should leave your work and sit at the gate of the temple and take alms of those who work with joy.
Introduction
I discovered Kahlil Gibran's The Prophet (1923) at a critical moment of my graduate program: whilst deciding whether to finish it. His reflections "On Work" and why it is important both soothed and inspired me, reinvigorating my research (and my will to do it). The key theme of my research was psychiatric disability,1 which refers to people with a DSM (Diagnostic and Statistical Manual of Mental Disorders) diagnosis who fit the legal definition of disability in the U.S. and qualify for welfare state entitlements such as SSDI (Social Security Disability Insurance) or SSI (Supplemental Security Income).2 What drove me to explore psychiatric disability through the lens of "work" was the awakening afforded me by this poem, as well as my coincidental introduction to critical disability studies.
For a recurrent psychiatric patient and anthropologist, I had a surprisingly uncritical view of mental illness and psychiatric disability until I encountered this literature. Then, irreconcilable questions began unravelling my research proposal (along with my life): What is "mental illness" or "psychiatric disability," if "brain disease" is oversimplified, capitalistic, and oppressive? What is "work," if "paid employment" is oversimplified, capitalistic, and oppressive? Within this chaos, I rediscovered the beauty of what I was actually doing: ethnography. An ethnographer need not provide definitive answers to deep questions. For an anthropologist – and a humble graduate student, at that – it is quite enough to muse about them through exploring people's lived experiences; to ask not what psychiatric disability or work "really" mean, but what work means to people who are defined by the state as "not able to work." How does their experience of disability trouble normative neoliberal understandings of work?
In this article, I think through the human need to engage in work and how this is troubled by disability. To do so, I provide ethnographic examples of ways in which people with psychiatric disabilities discover and define for themselves what work is and why it is important, thereby resisting dominant cultural narratives (if unconsciously). But before introducing the context in which I explored such topics, I want to examine Gibran's poem alongside a selection of academic pieces that wrestle with the concepts of work and disability.
"On Work (and Disability)"
In On Work, Gibran alluded to several truths about work to which early social theorists also attended. For example, that work is a social act: "When you work with love you bind yourself to yourself, and to one another, and to God." Of course there are material issues at play – work is required to meet subsistence needs – but work, especially the sharing of work, has been viewed as social glue for well over a century. As Émile Durkheim noted, one function of the "division of labor" is "to create between two or more people a feeling of solidarity" (1984[1893]: 17). Gibran also notes that through work, we maintain connection to our environment, avoiding "becoming a stranger unto the seasons." I appreciate this acknowledgment that "solidarity" applies not only to the people we are bound to, but also to the place(s). And of particular relevance to the concepts of work and disability today, Gibran wrote:
Often have I heard you say, as if speaking in sleep, "He who works in marble, and finds the shape of his own soul in the stone, is nobler than he who ploughs the soil. And he who seizes the rainbow to lay it on a cloth in the likeness of man, is more than he who makes the sandals for our feet." But I say, not in sleep but in the overwakefulness of noontide, that the wind speaks not more sweetly to the giant oaks than to the least of all the blades of grass.
Here, Gibran speaks to the way that acts and products of work come to be valued differently in socially (and materially) meaningful ways, and cautions readers against the uncritical over and undervaluing of work and workers.
Such advice is generally unheeded under neoliberal capitalism. Not only do we – in the U.S. and in other nation-states where neoliberal capitalism dominates – consistently overvalue (and overcompensate) certain work/workers and undervalue (and undercompensate) others, we have also thinned our understanding of what work is. The word has come to refer, by itself, to "paid employment" (Williams, 1976: 335) – both deed and site. We go to work at work, and using prefixes like "home" or "house," or words like "hobby" and phrases like "work-life balance," we differentiate between "work" and the rest of what we do with our time and energy.
This thinning in the meaning of work, and the over and undervaluing of its different possibilities, contributes to what critical disability studies scholars call "neoliberal-ableism." The idea that the neoliberal capitalist world – its ideology, its institutions – excludes and oppresses people based on their in/ability to produce, accumulate and consume. Runswick-Cole, Lawthom and Goodley (2016) describe it thus: "Under neoliberal-ableism, the rationality of the market is paramount; the ideal citizen is an adaptable citizen, indeed he is an able individual (note the deliberate gendered/ableist positioning of the subject here) who is caught up in and complicit with the demands of late capitalism" (257). Critical disability studies, through identifying and interrogating such phenomena, "aims to understand and challenge exclusionary and oppressive practices associated with disablism and to consider the ways these intersect with other forms of marginalisation" (258).
My present contribution is to highlight the oppressive neoliberal view on work as rankable and remunerative, and show how people have adapted to and challenged that reality. However, though I began with the frame of "work," my data ultimately led me to "purpose." I am not only theorizing work and disability, but people's subjective experience of fulfilment (and its opposite) in relation to work and disability. Irrespective of oppressive labels and systemic barriers to social and economic participation, my informants had similar worries that I and many I knew did: What do I need, and what do I need to do, to feel fulfilled? The answer lies in the interconnected feelings of purpose and community. The feeling that one, and one's work, matters to and in a specific group of people, and ultimately, the feeling that one belongs. Hence, my data-driven definition of work became purposeful activity that builds community.3
Humans are interdependent and social animals. We need to feel belonging – that we are connected to and needed by others – and such social needs are no longer believed to be lower on the hierarchy than material needs, as mounting evidence suggests that exclusion and loneliness are consequential psychological and physiological stressors (Sapolsky, 1998; Cacioppo & Hawkley, 2003; Lieberman, 2013). The related experience of purposelessness is similarly rattling. Purpose has long been considered a human need (Royce, 1995[1908]), and as Friedrich Nietzsche wrote: "When one has one's wherefore of life, one gets along with almost every how" (2004[1896]: 4). In awareness of this need, several forms of mental health treatment utilize purpose therapeutically. Acceptance and Commitment Therapy encourages people to identify and live purposefully by their values.4 And logotherapy is an existential/meaning-centered psychotherapy based on these tenets: the primary motivational force in humans is to find meaning in life, all life has meaning (even suffering5), and meaning is relative and constructed.6
The need for meaning is an urgent one, and it is both liberating and terrifying that one can (theoretically) construct life's meaning for oneself. Similarly, the fact that work is a subjective concept – that what one calls meaningful work, another might call frivolity – is also liberating and terrifying. It makes room for people who are/feel oppressed by neoliberal definitions of work to say "I am working, and my work matters," but it also enables people (e.g. myself) to look at ourselves or others and cry "you are not working enough!"
But it isn't sufficient to cry "relativity" when one feels worthless/(workless). The world is such that "paid employment" – though a narrow conception of "work" – is a significant means by which people cement their identities and feel purposeful and connected to a whole larger than the sum of its parts. Whatever idealists (e.g. myself) may wish, not having a job/career/capitalistic endeavor is tantamount to "step[ping] out of life's procession." It may be complicit with ableism to want a normative job, but as Goodley (2016) points out, "equating all things associated with the ability to achieve and enact specific ambitions and aims as always ableist (and therefore wrong) is problematic… A critical ableist approach need not inevitably lead us down an ignorant path where we refuse to acknowledge the importance of normative, perhaps even ableist, ideals" (197). It is important to interrogate norms, but it is also important to notice that not all norms are oppressive, and not all oppressive norms can or should change.
So what, then, does it look like when one adopts a critical understanding of work as "not simply paid employment, but purposeful activity that builds community"? At an individual level, (e.g. myself) perhaps one moves forward in life minus the miserable compulsions to evaluate, rank, or compete. And when a community adopts this mindset, what does that look like?
The Clubhouse Model of Psychosocial Rehabilitation
I became interested in the relationship between work and psychiatric disability because of contradictory phenomena. For example, I discovered that employment was purportedly associated with improved mental health, conjuring circuitous questions: Do people not work because they are ill, or are people ill because they do not work? Fortunately, the intellectual heavy-lifting required to settle this issue to my satisfaction had been done. In their critical analysis of Individual Placement and Support, the major form of vocational support in mental health, Essen (2012) concluded that though having a job is associated with improved mental well-being (in people who meet diagnostic criteria, and people who don't), it is not associated with improving symptoms of mental illness. And if it were, it would be fallacious to assume it was the job that was responsible. Yes, jobs provide stability and reduce economic hardship, which aids in recovery, but "the meaning of work for service users is very often intimately tied up with the renewed embodiment of a 'mainstream' identity, achieved through an integrative process of 'normalization'" (Essen, 2012: 234). It may not be the job, but what the job signifies – normalcy – that drives the improvement.
The second contradiction was the simple fact that though people with psychiatric disabilities are by definition not able to work, they could. This I learned through encountering the Clubhouse Model of Psychosocial Rehabilitation.
Fountain House, the first clubhouse, was founded in New York City in 1948 by discharged psychiatric patients who sought to reclaim autonomy in their recovery after years of passivity within the mental health system (Glickman & Flannery, 1996). Fountain House began attracting mainstream attention in the 1960s due to both advocacy and efficacy research (Beard et al., 1963; 1978), and standardization and expansion began in the 1980s. There are now over 300 clubhouses internationally, with development and accreditation overseen by an organization called Clubhouse International, established in 1994.7 The Clubhouse Model has 37 "Standards"8 of practice that have been devised by consensus, and which offer members lifetime membership, meaningful work, and the opportunity to build relationships.
The work-ordered day (WOD) is the primary rehabilitative method, and refers to the daily process by which members and staff work side by side to operate the clubhouse (Doyle et al., 2013). Each day begins with a meeting where people sign up for work, encompassing administrative tasks (answering phones, tracking attendance, "outreach"/checking in with absent members), kitchen tasks (preparing lunch, operating a snack shop), maintenance (custodial work, landscaping), and advocacy (writing to legislators when relevant, participating in anti-stigma events). The WOD is explicitly framed as "meaningful work," and is viewed as therapeutic by itself for enabling purpose and self-efficacy. It can also serve as a stepping-stone toward other vocational goals, such as Transitional Employment (TE), a foundational invention of the Clubhouse Model. With TE, the clubhouse has part-time jobs in the community that members rotate through. Clubhouse staff train members, work with them while they build confidence, and take over if they are incapacitated, which provides support to members and reduces risk for employers. Clubhouse colleagues also support interested members in finding independent employment.
Clubhouses are unique among mental health services due to their egalitarian structure, reflected in the intentional terminology: "member," not client or patient, or "colleague," to avoid differentiating between "member" and "staff." Additionally, authentic relationships between staff and members are demanded, not deterred. Staff must engage members in work, which requires building close relationships in order to identify and develop their strengths. Staff must also be hands-on and enthusiastic. As Mark Glickman (1992: 2) – a member of Fountain House and board member of Clubhouse International – notes:
If staff are passionate about the opportunities in the clubhouse, be they humble cleaning opportunities or working on the newspaper, a contagious enthusiasm will swirl around them… an important part of the staff's role lies in generating enough enthusiasm and sense of urgency about the club's needs to overcome the inertia and anguish which is a realistic part of mental illness.
In clubhouses, staff build close relationships, get their hands dirty (sometimes quite literally), and in so doing, undermine the hierarchy one often finds in mental health settings.
Engagement in work also involves staff believing in members. Clubhouse director Andy Wilson said the ultimate rules for staff are "expect that everyone in your Clubhouse will have the ability and desire to be a leader" and "will get better" (2007). Research on expectancy theory suggests that interpersonal expectations, though often unconsciously conveyed, can significantly impact outcomes (for better and worse) (Rosenthal, 2002). But interpersonal expectations are shaped by stereotypes and biases that mirror the culture one lives in. According to clubhouse staff member Robby Vorspan (1999), staff must overcome unconscious prejudices if they are to believe in members, thus creating an environment where members feel genuinely needed. And it is "feeling needed" that many believe makes the model a success. As Jacqueline Peckhoff, a member and spokesperson, said during a 1989 conference address titled Patienthood to Personhood:
I spend so much time at the clubhouse because I am doing real work, and know that I am expected and needed. To be needed, to me, means more than anything else in my life, and it also means that I am living a meaningful life (2).
This success, translated to/by efficacy research, is often measured quantitatively via objective quality of life markers like rehospitalization or employment.
The first study by John Beard9 and colleagues (1963) involved a two-year experiment with 400 recently released psychiatric patients,10 some who became members of Fountain House and some who were referred to other services. They found that clubhouse members were rehospitalized significantly less and were employed at higher rates. Studies since then have found similar results, such that the Clubhouse Model was accepted by the Substance Abuse and Mental Health Services Administration (SAMHSA) as an "Evidence-Based Practice" in 2010.11 Additionally, a recent systematic review of efficacy research concluded that clubhouses yield positive impacts on membership employment and rehospitalization, as well as subjective quality of life, such as feeling a sense of community (McKay et al., 2016).
I am satisfied with the evidence that clubhouses help members set and meet employment goals, provide community, and prevent them spending as much time in hospitals (remembering that within this community, hospitalization is often not framed as failure, but as a routine part of life). What I feel curious to see, along with Biegel and colleagues (2013), are "ethnographic studies examining the interpersonal and support dynamic of the Clubhouse environment" (258). What is life like in a clubhouse? The nuances of people's stories, though understandably of less interest to insurance companies or funders, are important for those of us who seek to explore deeper questions about the experience of disability under neoliberal-ableism.
My Ethnography
I spent three years at an accredited clubhouse in Michigan (one of over forty in the State, twelve accredited by Clubhouse International) with five staff and an average daily attendance of 25-30 members. Members are low-income, as this clubhouse only accepts members who receive services from the local Community Mental Health agency and who are on Medicaid.12 I began as a volunteer, and then spent eight months as a social work intern working three days a week. When that ended, I returned as an ethnographer.
Foundational to ethnography are participant observation and interviews (Bernard, 2011). I was engaged in participant observation for 18 months, which involved working alongside colleagues: preparing meals, clerical tasks, attending meetings, etc. It also involved down-time: eating lunch, taking cigarette breaks and discussing the minutiae of life. Between February and October 2016, I conducted interviews with three staff and eleven members. In compliance with my Institutional Review Board requirements, all interviewees were legal adults.
Recruitment of interviewees was based on relationships. Despite the fact that it introduced bias, given the sensitive nature of the topic, it was important that the interviewee and I had developed trust and intimacy over my prolonged engagement at the clubhouse. My interview style was open-ended dialogue. I began by asking how the person came to the clubhouse, and then delved into their experiences with mental illness and the mental health system, family and community, and the clubhouse. I also asked them what they thought of as a "good" or "meaningful" life, and sought to understand if and how they had made this happen for themselves. When sharing their stories, I use pseudonyms to protect their privacy. However, interviewees were informed that, due to the size and intimacy of their community, people who know them may identify them in my publications.
Interview transcripts13 and field notes were analyzed inductively. Unsurprisingly, given the Clubhouse Model's explicit focus on "meaningful work" and "relationships," the themes of work, purpose, and community were salient. In this article, I organize my analysis into three sections: The sections Purpose and Community explore the needs that clubhouses meet, and Positive Work Environment explores how they meet those needs.
Purpose and Community in the Clubhouse
Purpose
Structure versus Timelessness
"Paid employment" is normative, so it is unsurprising that members talked a lot about jobs. Many claimed to want a job (though as Essen [2012] noted, this doesn't mean they actively sought one), and yet I heard the common refrain that there weren't many jobs, least of all enjoyable ones, for "people like us." Dorothy, a member since 2007, worded it thus:
Sure some find a job, if they are lucky. But they always give low end jobs to people like us, with mental illness. I want more than that. People with mental illness deserve the same opportunities as everybody else, not offered the work no one else wants to do while the employers pat themselves on the back.
Dorothy also discussed the "hurdles" that prevented her from working, such as stigma, health problems, racism and sexism,14 and companies that wouldn't "work with her" (provide disability accommodations). In spite of this, she wanted to work; "it hurts me not to be contributing to society. I want to work."
Of course, material considerations are a factor since, as one rather jocular member told me over lunch, "disability [SSDI/SSI] barely covers the cheeks of my ass." But money was infrequently emphasized when members described why working mattered most to them. More important was purpose: that one feels like one is "contributing to society," as Dorothy said. In examining this further, it became clear that the feeling of purpose came in part due to structure. As one staff said, "you need a reason to get out of bed every day, you need structure, to be expected somewhere." And Dan, an older member, mused that "if you're disabled, it is tough, but you gotta do something. You have to work. If you don't, well, I don't know what to say. It's just, you gotta do something. You can't sleep 24 hours a day." Here, I juxtapose the structure of work – that there is a specific time and place that one is expected to be, specific tasks to do, and specific people to whom one is accountable – with the timelessness of unemployed disability.
By timelessness, I am referring to what researchers have seen amongst people marginalized by homelessness or institutionalization. For example, in Asylums, Goffman (1961) noticed that when nothing begins or ends or changes, the experience of time disintegrates. And Robert Desjarlais (2010[1994]) noted that amongst people experiencing homelessness and mental illness, many lost the ability to remember events or construct cohesive life stories. As Rena said offhandedly when I asked how long she'd been a member: "I don't know. You know I have schizophrenia and we don't keep track of time." Goodley (2016) reminds us that "we rethink temporality through disability" (195), and 'timelessness' is an unsettling extreme. In many members' tales of life before the clubhouse, timelessness was a recurrent theme.
Andy described the years he spent living alone in a small apartment with an air of sadness, saying he would lose track of time – what week or month it was – because "I only left my room when nature called."
Andy: Now, instead of being at home all day with nothing to do, I come here and work. I spent years doing nothing, bored and inactive and unproductive.
Me: So before you came here you had trouble finding structure, staying occupied?
Andy: Structure, you've said the magic word, structure… These days I have a great routine. I have a TE position, three hours a day twice a week. Then I come here two days a week, and the other day I use to do my running around. Getting my blood drawn, seeing doctors, getting meds filled. You know.
Me: Keeping busy.
Andy: Yes, I gotta keep busy and structured. When I am a bad boy that's when I'm not active enough! So I try to keep myself active and my mind preoccupied.
Similarly, Clarice decried the inactivity and purposelessness of unemployment as an exacerbating force. Clarice was a young woman who had experienced profound trauma – most notably for her, losing the one person that had made her feel purposeful, a child that she had nannied from infancy to five-years-old, in a horrific car accident.
Clarice: When I started coming here I really found it helpful. Helpful because I was doing something, I wasn't just sitting at home, I wasn't thinking about suicide, I wasn't thinking about her (the child) constantly. I had something to do with my time.
Me: So you preoccupied yourself with something more neutral or positive.
Clarice: Yes, exactly… I really like helping people. That helps me, when I am able to look at another member and get them to see something in themselves that they can't see.15 I think because I used to not be able to see things in myself, and people pointed it out to me.
Andy and Clarice remind us that the proverb of idle hands (or as Gibran wrote, "step[ping] out of life's procession") serving as the devil's workshop has truth to it. Idleness can be experienced along a spectrum, from exhilarating freedom to excruciating timelessness. It depends on perspective and context. People with psychiatric disabilities who live in timelessness do so because they have no choice, and this does not feel like freedom. And for people who have experienced trauma – which goes hand in hand with experiencing mental illness (and for some, the mental health system) – having nothing but endless time and one's own mind to disappear into can be perilous. Clarice was hospitalized several times for suicidality, which she explicitly linked with "just sitting at home" ruminating on her grief. Both Andy's and Clarice's lives were considerably worsened by the inactivity and lack of purpose that characterize living in a world of timelessness. Things improved notably when they found opportunities for structure, for "keeping busy," for healthier preoccupation, in the clubhouse.
I find it fascinating that structure can be both means and end. Through structuring one's time – as I will elaborate upon in the final section – one can more easily set and work toward goals. But structure – or the feeling of purpose it instills – can also be the goal.
Menial does not equal Meaningless
The element I found most intriguing in exploring "purpose" was that whether or not something feels purposeful is context dependent. At the beginning of this section I mentioned that many members wanted a job, but didn't have one. I came to see that without the clubhouse, their need for purposeful activity would remain unmet. Each member I interviewed told me in one way or another that they would feel lost without the clubhouse.
Yet I wondered about clubhouse work. Initially, I would watch people doing tasks that seemed by all accounts to be menial, the same "low end jobs… no one else wants to do" that Dorothy decried. I would be doing this work – cleaning bathrooms, for example – and I would not feel purposeful. My "ahaa" moment came when, in a meeting with my supervisor, she said she wasn't surprised that I was struggling to feel purposeful by focusing on the tasks themselves, because the point of my job was not the tasks themselves. It is not what you work on, but how, and the rule of thumb in a clubhouse is "never work alone." As Clarice remarked:
When I first came here I thought [the clubhouse model] was just about getting tasks done, but now I see that it is really about creating a meaningful community as well as learning skills that could help you get back to work.
Later in our interview, she elaborated:
Clarice: My goal here, what makes me feel productive here, is not just tasks…my goal is can I empower my friends? Can I empower other members to see themselves not as a person with a mental illness, but a person?… And you know, I want people to see that this is not just busy work. It is not just doing stuff to keep you busy. We are trying to teach you skills, to be productive, to stay on task, that we need help and you are needed.
Me: so it isn't just keeping people busy, but teaching them how to be busy.
Clarice: Exactly.
Post "ahaa," once I knew what I was seeing, I found evidence for this – that the point of clubhouse work is teamwork that leads to member empowerment – daily. For example, when Marian said from behind the reception desk, "come on back honey, I need all the help I can get!" to Sophie, a member sitting idly nearby. Or when Bevan, a young man who attended regularly and had his own part time job due to clubhouse support, patiently sat beside a member with dementia and had her highlight each name on the attendance sheet after he entered it into the database.
I came to learn that menial does not equal meaningless. Any task can be imbued with meaning in the right circumstance. In my initial reaction, I was unconsciously channeling the neoliberal belief that certain work/workers are more valuable than others, that "He who works in marble…is nobler than he who ploughs the soil," forgetting that "the wind speaks not more sweetly to the giant oaks than to the least of all the blades of grass." But the wind speaks just as sweetly to the woman who slowly and shakily highlights names as it does to the Ph.D. student who watches.
Community
Supportive Relationships – "knots we can hold on to"
The former section focused on how work comes to feel purposeful, and embedded in each scenario was community. In fact, intrinsic to the Clubhouse Model is the interdependence of work and community. In this section, I delve more deeply into the sense of community that I witnessed, heard about, and came to feel myself. Many told me the clubhouse felt like "home," and the clubhouse community their "family." Once during a meeting, a member poetically described clubhouse relationships thus: "They help tie a knot that we can hold on to when life is tearing us down."
Family, community, and supportive relationships are recurrent themes in the qualitative literature on clubhouses. Biegel and colleagues (2013) found that almost 60% of their informants perceived improvements "in social relationships, friendships, [and] social support" (255). Carolan and colleagues (2011) heard descriptions of the clubhouse as "feeling like home" or as "surrogate families" (131), just as Staples and Stein (2008) noted "the strong sense of community, becoming almost like a second family" (187). As an anthropologist, I hear the term "family" and my attention turns to the complex theoretical discussions about what kinship is (and is not) (Sahlins, 2013). This is important, though tangential to the aims of this article. What is relevant here is the fact that there are members who feel connection they describe as familial, warm, and supportive, suggesting that clubhouses enable a level of comfort and community uncommon in mental health settings, and often sorely lacking in peoples' lives. When asked what the major difference between life before and after the clubhouse was, Andy said:
I have a community. It is a family almost. You know, everybody supports and helps each other, works together, there's no prejudice, nothing that rubs me the wrong way, we are all tolerant of each other and help each other out, whether it is with work or just talking. I am grateful for that.
Similarly, for Marian:
They are like my extended family… [The director] even cat-sat for me when I had knee surgery!
I participated in countless celebrations of friendship and camaraderie that indicated the strong sense of community at this clubhouse. I was part of birthday celebrations, and tearful goodbyes as colleagues moved on to new jobs or cities. I witnessed members fall in and out of love with one another. I spent Christmas and Thanksgiving – for the clubhouse is open on all holidays – participating in the inevitable stressful bustle of feast preparations. Of course the environment was not without its interpersonal drama – definitely not – but the majority of members were grateful to be there together. (Since membership is voluntary, there are surely people who came and did not approve, but I was unlikely to meet them). As Dorothy said:
I am very grateful to have the clubhouse because it became the backbone I didn't have. The support system. It is a family I can talk to… We have a bond. We are just like a family. Family argue, family have problems once in a while, but at the end of the day we know where we stand as a group of people, as a community, as a family.
Respite from Stigma
Though many felt content in their lives within the clubhouse, before, as well as outside of it, they experience/d stigma and loneliness. Many had no other community. Whilst interviewing Rena, she told me that she didn't know why, but aside from her father she "only spends time with clubhouse people." As I urged her to think through it, she mused, "I guess outside of this place, people think I'm a weirdo." We both laughed, some combination of laughter-from-humor and laughter-from-frustration.
Me: You're right. A lot of people with mental illness are made to feel like 'weirdos.'
Rena: Yeah, but most of what makes us act weird is from the shit that happens. We are all a little bit messed up by life, and once it starts building up, we get messed up even more.
Rena's words were astute; mental illness is influenced by shit happening, and life/shit messes everybody up. Her point echoes Lennard Davis' (2013) idea of dismodernism: "a dismodernist mode…aims to create a new category based on the partial, incomplete subject whose realization is not autonomy and independence but dependency and interdependence. This is a very different notion from subjectivity organized around wounded identities; rather, all humans are seen as wounded. Wounds are not the result of oppression, but rather the other way around" (275). Rena's words also shed light on the main mechanism by which people with psychiatric disabilities find themselves lonely and without community: stigma and exclusion.
Not a single member I spoke to failed to mention the reality of stigma and exclusion in their lives, nor that the clubhouse was a much-needed respite. Like Hope, a young woman with whom I spent considerable time working the reception desk:
I felt rejected by my family, especially when I was homeless… Well, maybe they didn't reject me, but they wrote me off as crazy… I kind of had to figure out how to get help alone.
And Francine, with whom I worked on clerical tasks:
Because we share similar experiences, it is a deeper level of identifying with people. Last week we went to a museum as a group. [I realized that] I'd had so little of that, just being part of a group. I don't feel as isolated as I did before.
As mentioned earlier, this sense of belonging to a community – "just being part of a group" – is a basic human need, one which is often unmet for people who experience psychiatric disability.
Positive Work Environment: "Clubhouses work for people with mental illness because they work for people"
In order for a clubhouse to provide opportunities for work – purposeful activity that builds community – to be rehabilitative, the work environment must be inclusive of various strengths and limitations. Many work environments under neoliberal capitalism are, as Marx would put it, "alienating" (Marx, 1978). What makes clubhouses feel like un-alienating work environments? The director of the clubhouse had this to say: "Clubhouses work for people with mental illness because they work for people." In her view, clubhouse work is not particularly tailored toward people with psychiatric disabilities, it is a commonsense approach to making people feel positive in their work. Clubhouse colleagues have spent 70 years honing intentional practices that foster a work environment in which people feel positively about themselves, their work, and the community. In this section, I describe some of these practices.
Collaboration and accountability
As mentioned, I had an "ahaa" moment in which I learned that the purpose of clubhouse work was working together in order to foster community and member empowerment. A big part of purposeful productivity is accountability: working toward something together, with an awareness that one's role matters. It is motivating to be needed, though it adds pressure.
An example was lunch preparation. The individual tasks that, when combined, would result in the very important transformation of "no lunch" to "lunch," would be broken up and people would volunteer: cutting vegetables, setting tables, etc. The kitchen space was open, and people would work side-by-side and directly see how their task contributed to the whole. Andy told me why he liked working in the kitchen:
We work together as a team, and it feels good. You go into the kitchen and someone is like 'wanna help with dishes?' and someone has to sweep the floor, mop… it is a good feeling to know that you are needed, and that you have backup.
In the kitchen Andy felt needed. He was motivated by that pressure, but also secure because he had "backup," so he wouldn't be overwhelmed. Another reason why lunch preparation didn't feel overwhelming is because it was broken into chunks, emphasizing the value of "baby steps."
"Baby steps"
When it comes to rehabilitation, "baby steps," are fundamental. As Mark Glickman suggests, "just as physical rehabilitation begins with light weights and simple, gentle stretching, so psychiatric rehabilitation and recovery begin with easy-to-accomplish tasks both in the clubhouse and then in the community, through paid jobs in transitional employment" (2012: 1170). Wendy described her journey thus:
When I am well I cook, and when I am unwell I don't. So [when I first joined] I started in the kitchen because a goal was for me to get back to cooking. And I met Katie (a staff member) and paired up with her. I was so shy and she was so sweet to me, and she helped me go in toes first. Do a little bit and then a bit more. Within a month I was back to cooking at home… I really believe people thrive when they can build on successes. The first thing I was successful at here was chopping an onion. Katie taught me how, and I did it, and I was successful… And as I was successful with one thing, I moved on to other things. Setting up the salad bar, making the entrée, building the new website. Increments. And by the time I was thinking about applying for a job, I was like "why wouldn't I apply for a job, I just made a website!" … I had a lot of support in looking and applying for jobs. I now work 15 hours a week. My plan is to work and go to school part time at the same time and see how that goes, because I'll keep my SSDI… see the thing that is hard about getting off SSDI is that you can't do it in increments, so there is a risk. This way I will go up to full time, but with school, which won't impact my benefits.
Wendy illuminated many important points about rehabilitation. She emphasized the importance of support and encouragement – Katie showing her the steps, colleagues helping her apply for jobs. She also highlighted the importance of "increments" and building on prior successes. She built toward employment ("why wouldn't I apply for a job?") as a behavioral analyst technician from the humble (and tearful) task of onion-cutting. She also pointed to a significant systemic barrier: in spite of the necessity of increments, there is no incremental way to wean off of SSDI and onto fulltime employment.
My interview with Andy also provided key insight. When we interviewed, he had been a member for six years, and was nine months into a Transitional Employment (TE) position. After discussing how his life had changed since he became a member, I asked him what he thought inspired such a change:
Andy: Probably just getting out and exploring… It makes me feel like I am getting out there, getting my feet wet, I am not closed off, not holding back. I'm not really a social person usually.
Me: Yes, it sounds like you were shy and withdrawn, and being here helped you participate in the world a bit more.
Andy: Yes. In baby steps.
Me: Was it scary to go back to work?
Andy: Yes! I hadn't had a job in over ten years. I've been there nine months now. It went so fast!
Me: It is a miracle what we can do with just small steps.
Andy: That's right, like I said, little baby steps. And I never took the initiative, I might never have, so having staff here give me that extra push, ask me directly if I was ready for a TE, I needed that. That's why I feel good today that I did it, that I didn't pull back. I went for it.
The "baby steps," as well as the "push" – that others believed in him, held him accountable, and encouraged him – enabled Andy to "go for it."
Appreciation, encouragement, and acceptance
In the clubhouse, people are regularly thanked and complimented for their contributions and skills. In fact, morning meetings begin with "affirmations," where people are publicly acknowledged. On the topic of the clubhouse work environment, Francine told me:
After I started coming, a lot of things fell into place… They taught me new skills, I entered information into the database – I never thought I would be doing anything like that on a computer!… But it was kind of fun and I felt like I was doing something, because everyone was so appreciative. That's one good thing about being more involved – getting a lot of kudos, a lot of support, and encouragement… [And at first] I would hide [whilst symptomatic], but now I come in and get the positive feedback I need to keep going. People are sensitive to days when people are not all there and can't do what they normally can. All of that is OK here. That helps recovery. You know you can be yourself whether you're up, down, or in between.
Francine not only illuminates the importance of appreciation and encouragement, but of acceptance: that whether one is having a good or bad day, whether one can or can't, "all of that is OK here."16 And it is this encouragement and acceptance that has facilitated commitment, a unique experience for her. At 70, she has never spent more than two years in one place or with one pursuit. That is, until she moved here and began coming to the clubhouse:
I've been [here] 5+ years now, the longest I have been anywhere since 1964. Hahaha, I finally settled down! I'm 70 years old, and finally kinda settled.
Ensuring the work feels meaningful
As Clarice mentioned, "this is not just busy work." Because of the commitment to meaningful work, colleagues regularly do an inventory to ensure that no tasks are superfluous. Sometimes, this involves getting rid of tasks, like when they did away with paper in favor of electronic records. Sometimes it involves creating new tasks, such as the decision to change the way lunch was served. When I started, people would line up for food. Now, there are servers and bussers, which enables new skills and more participation. And sometimes, this involves reframing tasks. During my internship, I was responsible for devising a "mission statement" for the reception desk, which would allow members to see their contribution to the whole. Rather than simply, "we greet people, we answer phones, we answer questions," Hope – my primary desk partner – and I agreed that the reception desk was "the face of the clubhouse, and the informational hub." By explaining how a warm welcome or pleasant phone experience contributes to a positive workspace, and how important clear information is, Hope and I showed our desk colleagues how necessary they were to the smooth operation of the clubhouse.
To tie this to the idea that "menial does not equal meaningless," the key point seems to be that meaning rarely comes from the task itself. It matters less what the task is or which of our skills it engages. Meaning in this context is a subjective feeling that comes from our perceiving a task as urgent or helpful to people who matter to us. Ensuring that work feels meaningful appears crucial in creating a positive work environment, and all it takes is intentional framing of each task in relation to the whole.
Engagement, not coercion
This point follows from the last insofar as when work feels meaningful, people want to do it. It is crucial – written into the "Standards" – that clubhouse work is voluntary. Members must not be or feel forced to work, so there is much emphasis on engagement: the goal is to motivate, not manipulate. This is particularly important due to the history of coercion and exploitation in spaces such as sheltered workshops or moral treatment facilities (Ernst, 2016). As Levinson (2005) points out in his article based on ethnography in a New York City group home for adults with developmental disabilities: "there has been an overall shift from a coercive model of services to a clinical one that, at least ideally, takes into account the rights and autonomy of individuals" (57). In short, clubhouses are not singular in their emphasis on autonomy in reaction to past exploitation.
All colleagues are responsible for engaging newcomers in work, but the ultimate responsibility is with staff. As one member of staff described:
There is a fine line between engagement and coercion. It is important that we are not making it seem, in our tone or whatever, that someone has to help. But it is hard to know the difference between a member who needs a bit more encouragement because they have so little confidence in their abilities, and a member who just straight up doesn't want to work.
Interestingly, the director pointed out that sometimes, refusing to work is a member's way of exercising agency in a world where they often feel powerless. They don't get to say no to medication 17; they don't have control over the bureaucracies that determine their benefits; and for those who live in them, they don't get to say no to the staff in their group homes who tell them when to sleep, dress, shower, and shit.18 They do get to say no here.
That said, clubhouses are work-focused programs, so past a certain point, members who treat the clubhouse as a place to socialize draw frustration from colleagues who feel, justifiably, taken advantage of. It is one of Marian's pet peeves:
I can't stand it when folk just sit and drink coffee and eat lunch and never lift a finger. This is a work-focused program! If you just want to socialize, go on down to [the drop-in center].
There is ambiguity here: Is it appropriate for members to use the clubhouse only to socialize? Who decides? In the end, staff handle this by continuing to ask and being transparent about why:
"We could use an extra hand in the kitchen. Wanna set the cutlery?"
"I told you no. Stop hassling me!"
"I know you did, and I'm sorry to hassle, but we really need the help, and you know, I'm supposed to include you in the work-ordered-day."
The hope is that each member will gravitate to some task(s). In reality there are some who don't, but for the most part even those less inclined to work have tasks to which they are drawn. For example, one man refused almost everything except facilitating meetings. In such moments, whether or not the staff saw this as problematic – the dynamic of a man almost exclusively occupying leadership roles – they'd likely say "thanks, you're a great facilitator!" (i.e. appreciation and encouragement).
I felt conflicted when staff overlooked sexism, or used problematic gender tropes in their engagement strategies (e.g. "we need a man for the grill"). But the Clubhouse Model's success rests upon staff's ability to make members feel needed – and alas, gender sometimes played a role. Connecting with the clubhouse mission helped me reconcile this: Clubhouses are not intended to smash the patriarchy, they are intended for psychiatric rehabilitation. "Engagement" is not without its nefarious undertones, but I cannot in good conscience belabor the presence of patriarchy in the clubhouse when the nation-state it exists in elected Donald Trump as president.
Conclusion: "Work is love made visible"
I am captivated by the phrase "work is love made visible" each time I revisit The Prophet. It encapsulates my understanding of work as "purposeful activity that builds community," and encourages me to make more of my actions labors of love.
This article is a labor of love. As a researcher, I must own my biases, so I will admit that it is not easy for me to criticize the clubhouse because I have given and received much love within those walls. As a strange parallel, my role fostering purpose and community in members also fostered purpose and community in myself. I am not alone in this. The staff felt the clubhouse infused their lives with meaning and love, and once, another clubhouse researcher told me that her inspiration to keep researching was inseparable from the joy she took in being there. Whatever its imperfections, a clubhouse can undeniably foster warmth and loyalty.
That said, I want to wrestle with my major criticism, alluded to throughout this article: Though clubhouses challenge neoliberal-ableism by 1) creating a positive work environment, that 2) reshapes members' self-identification from "dis-abled"' to "able,"' they also reproduce neoliberal-ableist values by failing to challenge the "normal life" into which members rehabilitate. Clubhouses do not aim to instill in members a critical consciousness about broader social conditions – such as white supremacy, heteronormativity, classism, or, as alluded to earlier, patriarchy – and very few of the clubhouse colleagues I worked with questioned the ableist undertones of the "brain disease" model of mental illness.19 Additionally, the goals that clubhouses help members work toward are normative. But as Goodley (2016) writes:
human practices which might be deemed as deeply normative (working, earning money, shopping, marriage) remain desirable for many people (disabled or not disabled). Being poor and wanting more money might smack of a neoliberal-ableist subjectivity to those of a crip persuasion. To others it is a matter of life and death (201).
In other words, though striving for "normalcy" means compliance with oppressive norms, it is also valid. And paradoxically, it can be viewed as an empowering indicator of fighting for a place at the (albeit oppressive) table.
My overall view of clubhouses is positive. They "work" in the efficacy research sense, though are still "considered non-mainstream" (20), which Mandiberg and Edwards (2013) attribute to the current emphasis on (and money in) individualizing approaches. Unlike clinical treatment, clubhouses de-center individuals and their particular problems and needs, and foster "collective identity" – a well-researched buffer against stigma and loneliness (Mandiberg & Edwards, 2013). This reminds me of a quote from a Fountain House staff member who had a history of mental illness:
So many times we hear about the special needs of the mentally ill. But lots of what we need isn't special. Is it a special need that you want friends? That you want an intimate relationship? A social life? A job? A home? Food? A little bit of money in your pocket? (Glickman & Flannery, 1996: 161).
A sense of collective identity, of belonging to a community in which one and one's work matters… these are the "unspecial" needs that clubhouses meet – for members, staff, and the occasional ethnographer.
References
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- Carolan, M., Onaga, E., Pernice-Duca, F., & Jimenez, T. (2011). A Place to Be: The role of Clubhouses in facilitating social support. Psychiatric Rehabilitation Journal, 35(2), 125-132. https://doi.org/10.2975/35.2.2011.125.132
- Davis, L.J. (2013). "The End of Identity Politics: On Disability as an Unstable Category," pp. 263-277 in The Disability Studies Reader ed. L.J. Davis. New York, NY: Routledge.
- Desjarlais, R. (2010[1994]). "Struggling Along: the possibilities for experience among the homeless mentally ill," pp. 160-174 in A reader in Medical Anthropology: Theoretical trajectories, emergent realities, eds. B. Good, M. Fischer, S. Willen. Malden, MA: Wiley-Blackwell.
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- Durkheim, E. (1984[1893]). The Division of Labor in Society. (W.D. Halls, trans). New York, NY: The Free Press.
- Ernst, W. (2016). Work, Psychiatry and Society c.1750-2010 (W. Ernst ed.). Manchester, UK: Manchester University Press.
- Essen, C. (2012). Does Individual Placement and Support really 'reflect client goals'? Journal of Psychiatric and Mental Health Nursing, 19, 231–240. https://doi.org/10.1111/j.1365-2850.2011.01769.x
- Gibran, K. (1923). The Prophet. New York, NY: Alfred A. Knopf, Inc.
- Glickman, M. (1992) What if nobody wants to make lunch? Bottom line responsibility in the Clubhouse. Adapted from paper presented at 5th International Clubhouse Seminar, St Louis, MO. http://www.fountainhouse.org/sites/default/files/Glickman%20-what%20if%20nobody%20wants%20to%20make%20lunch.pdf
- Glickman, M., & Flannery, M. (1996). Fountain House: Portraits of Lives Reclaimed from Mental Illness. Center City, MN: Hazelden Publishers.
- Glickman, M. (2012). Personal Accounts: My Recovery: A Long, Winding Yellow Brick Road. Psychiatric Services, 63, 1169-1170. https://doi.org/10.1176/appi.ps.631201
- Goffman, E. (1961). Asylums: Essays on the Social Situation of Mental Patients and Other Inmates. New York, NY: Anchor Books.
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- Levinson, J. (2005). The Group Home Workplace and the Work of Know-How. Human Studies 28(1), 57-85. Retrieved from http://www.jstor.org/stable/20010398 https://doi.org/10.1007/s10746-005-3597-4
- Lieberman, M. (2013). Social: Why Our Brains Are Wired to Connect. New York, NY: Crown Publishers.
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Endnotes
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As Margaret Price (2013) suggests, it is important to use culturally salient terms, but consciously. I primarily use "psychiatric disability" over "mental illness" because it is more exclusive and best fits the people I worked with.
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Social Security Disability Insurance is for people who were employed and earned sufficient credits, Supplemental Security Income is for people who were never employed or did not earn sufficient credits https://www.ssa.gov/redbook/eng/overview-disability.htm (accessed 8/21/2017)
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This definition is context-specific. Not all work (in the generic sense of "something done") is "purposeful activity that builds community". That is the essence of "alienated labor" (Marx, 1978). Similarly, not all "purposeful activity that builds community" is necessarily "work" (i.e. spiritual or religious activity).
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https://contextualscience.org/act (accessed 8/21/2017)
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Not an insignificant caveat, as logotherapy was developed by Holocaust concentration camp survivor Victor Frankl.
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http://www.viktorfrankl.org/e/logotherapy.html (accessed 8/21/2017)
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http://clubhouse-intl.org/about-us/mission-history (accessed 8/21/2017)
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http://www.iccd.org/quality.html (accessed 8/21/2017)
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John Beard was the first director hired (in 1955). Today, the community attributes Fountain House's development into a work-focused rehabilitation program to his influence (Glickman & Flannery, 1996).
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Attributable to deinstitutionalization.
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The Clubhouse Model's listing in the National Registry of Evidence-based Programs and Practices can be found here: http://legacy.nreppadmin.net/ViewIntervention.aspx?id=189 (accessed 8/21/2017). Becoming Evidence-Based Practice generally facilitates funding and expansion, and this has been true for the Clubhouse Model. There is controversy surrounding the sacrifices inherent in standardization and professionalization, though I don't address this here.
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The clubhouse is Medicaid funded. This is problematic, as it violates the "Standard" that a clubhouse should be available to anyone with a DSM diagnosis, but is not uncommon in the U.S., and is standard in Michigan (see endnote 11).
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I transcribed my interviews. For the sake of narrative flow, I took occasional liberties regarding paraphrasing and cutting out redundancies or fillers/speech disfluencies.
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I thought constantly about intersectionality – the intersection of multiple identities and the privilege and oppression associated with those identities. However, though people regularly discussed ableism, other 'isms' were rarely mentioned. Dorothy, a black woman, was the only person to discuss this with me in any depth.
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This idea of helping as helpful is well-researched, and features in the qualitative clubhouse literature. In Carolan and colleagues' (2011) study, one participant said, "Helping others helps me not to think about my problems. I feel like I have a purpose and can help others. It feels nice to do that when you are usually the one who needs help from others" (129). Reciprocity was also noted by Pernice-Duca and Onaga (2009: 2): "people with mental illness think of themselves as takers rather than being in reciprocal relationships, but being a part of networks of exchange and reciprocity is an important feature of human societies."
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With the caveat that this is not always true. People are redirected ("that is not appropriate here") or asked to take time away if they are creating negativity that impacts the group.
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Sometimes literally (i.e. forced medication regimes), but even without direct force, medication is not pitched as optional for psychiatric patients in the U.S.
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The group homes I heard about – bearing in mind the possibility of exaggeration – did not sound as committed to resident autonomy as the one Levinson (2005) described.
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There are notable exceptions, including a woman who I overheard telling a representative of NAMI (the National Alliance on Mental Illness), "I don't buy the busted brain hypothesis. That's why I don't like the word 'disability.' I prefer diff-ability – different ability."
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