An “Oasis within a Desert,” but the Desert Remains: Clubhouse Members’ Experiences of Social Belonging and Societal Oppression

Abstract

Persons living with mental health challenges are at increased risk of stigma, social isolation, and social exclusion. Due to its emphasis on member participation and community, the clubhouse model of mental health may help address these issues. In this study, we examined experiences of social belonging and of various social determinants of mental health among members attending a psychosocial clubhouse. Twelve members of a large psychosocial clubhouse were interviewed regarding their experiences of community life and belonging. Phenomenological qualitative methods were utilized to examine the meaning and structure of these experiences. Members overwhelmingly experienced the clubhouse as a central site of belonging (“an oasis”), but members also recounted devastating portraits of life in the outside world (“a desert”). This world presented fundamental restrictions on their movement and speech and held deeply sedimented norms pertaining to who is considered valuable, productive, and even human, which they were reminded of through an endless tyranny of questions (“what do you do,” “where do you live,” etc.). Life in the clubhouse presented an alternative world for members to experience nourishment, dignity, reaffirmed personhood, and a sense of beauty. And yet, the desert outside remained. Implications of these findings for clubhouses, mental health practice, and sociopolitical and community engagement are discussed, including the need to address profound deprivations and power imbalances within the wider world, beyond the walls of humane spaces such as these.

Social isolation and loneliness are thought to be vexing determinants of public and mental health (Gerst-Emerson & Jayawardhana, 2015; Jaremka et al., 2014; Wang et al., 2017), which may be more pronounced for community members who are already excluded from or discriminated against in social settings. This may certainly be the case for persons who have a diagnosis of severe mental illness, are voice hearers, or are in recovery from mental health conditions, all of whom face marked stigma and discrimination (Carolan, Onaga, Pernice-Duca, & Jimenez, 2011; Conrad-Garrisi & Pernice-Duca, 2013; Hatzenbuehler, Phelan, & Link, 2013), within multiple levels of society, from law and health care to employment and daily interactions (Corrigan et al., 2004; Jenkins & Carpenter-Song, 2009; Link & Phelan, 2014; Sheehan et al., 2017).

Stigma towards these persons can be seriously debilitating and devastating on its own (Link & Phelan, 2006), doubly so for those also occupying other marginalized social positions (Gary, 2005; Link & Phelan, 2006). In addition to such double stigma, the literature has identified at least seven additional forms of stigma that may affect persons with mental health challenges, including stigma that is publicly sanctioned (public stigma), internally directed (self-stigma), or follows from official, restrictive policies (structural stigma); these in general are thought to be bound up closely with pervasive harmful stereotypes associated with mental illness, such as alleged dangerousness and incompetence, and may be significant drivers of heightened discrimination and social isolation (e.g., Sheehan et al., 2017).

One social institution that has emerged partly in response to these issues and the lack of opportunities for people facing such circumstances is the mental health “clubhouse,” a model first developed by Fountain House in New York and now present in and informed by clubhouses in over 30 countries around the world (Clubhouse International, 2020; Gumber & Stein, 2018; Kang & Kim, 2014; Mandiberg & Edwards, 2013; McKay, Nugent, Johnsen, Eaton, & Lidz, 2018; Pardi & Willis, 2018). This model originated in the 1940s, emerging from a grassroots form of mutual aid, which then developed into a formal clubhouse model for mental health that centers on what is called the work-ordered day (Doyle, Lanoil, & Dudek, 2013; Mandiberg & Edwards, 2013; McKay et al., 2018). In a work-ordered day, members and staff work together to fulfill the essential functions and projects of the clubhouse, from training and hiring to food provision and employment support (Gumber & Stein, 2018; Schonebaum & Boyd, 2012). At these clubhouses, persons with lived experience of mental health conditions support each other, build social relations, engage in meaningful activity and work, and interact with staff on an egalitarian, side-by-side basis; collective identity and participation are central to this model (Mandiberg & Edwards, 2013; Tanaka, Craig, & Davidson, 2015). Due to this central emphasis on a person’s active participation in community, and long-standing focus on members’ housing, employment and isolation challenges, clubhouses are generally considered early pioneers in addressing social inclusion and mental health (Doyle et al., 2013; Gumber & Stein, 2018; Raeburn, Schmied, Hungerford, & Cleary, 2018; Tanaka & Davidson, 2015b).

Several studies have examined the restorative, supportive, and positive environmental aspects of clubhouses in relation to members’ lives and recovery. As examples, Carolan et al. (2011) identified the clubhouse as a place of belonging, nourishing growth, and meaningful social engagements and activities, fueled by underlying cultures of respect and commonality. Conrad-Garrisi and Pernice-Duca (2013) examined the development of a sense that one matters, of mattering (Rosenberg & McCullough, 1981), as facilitative of recovery and anti-stigma within clubhouses, with reciprocity and mutual giving as key experiences (c.f., Tanaka & Davidson, 2015b). Tanaka and Davidson found “clubhouse ways” including accepting and letting one be. Kang and Kim (2014) described the multiple ways that clubhouses serve as a haven or even a hometown for its members. Kinn et al.’s (2017) meta-analysis of several clubhouse studies offered the metaphor of a seafarer to characterize key elements of these studies, with evidence that clubhouses help members “push the boat out,” hold onto an anchor, and benefit from an environment beyond “limiting realities.” Though describing limitations of the clubhouse, members felt productive and democratically engaged within it (Kinn, Tanaka, Bellamy, & Davidson, 2018, pp. 1206–7). Mandiberg and Edwards (2013) discussed how the myriad of collective experiences afforded by clubhouses can contribute to a sense of group identity, membership, and collective ownership.

While there have been several studies documenting the beneficial aspects of life within the clubhouse, the world faced by members outside the clubhouse—including its societal problems, social relations, and sense of belonging—has been less explicitly thematized within research (Gumber & Stein, 2018). The specter of the stigmatizing world has always been in the background of both clubhouse research and practice. For instance, studies above found that clubhouses afforded members reprieve from discrimination, from being treated like a nobody for not making money, and from pestering questions, for instance about why someone often remained quiet (Kang & Kim, 2014, p. 472; Kinn, Tanaka, Bellamy, & Davidson, 2018; Tanaka & Davidson, 2015b). Mandiberg and Edwards (2013) found that the collective sense of ownership in and of clubhouses may help buffer against the pervasive stigma experienced on the outside, “[where] people with mental health conditions are visitors, where any mistake can reveal that status and some mistakes can result in removal, incarceration, and even greater stigma” (p. 28).

Though there seems to be an interplay between clubhouse participation and the unjust world that members face on the outside, more research is needed to directly examine the complex relations between these two spheres of life. Examining these intersections may shed light not only on the clubhouse model and related recovery-oriented programs, but on the worldly challenges faced by persons experiencing mental health problems—urgent issues with respect to both community mental health and social justice.

One such clubhouse was interested in learning more about the ways in which social belonging and the social determinants of mental health feature in their members’ experiences, as well as the role and place of the clubhouse within this broader context. Through a mixed methodological project, we worked with them to delve more deeply into these issues. The study here reflects the qualitative portion of the broader mixed-methods study (with the quantitative portion examining the relation of clubhouse engagement to multiple dimensions of psychosocial wellness and recovery). For the qualitative portion, we specifically chose a phenomenological qualitative method, which is well-suited to the study of sedimented and shared meanings of the social world(s) inside and outside of the clubhouse, from the perspectives of those experiencing them. More qualitative research of this type has long been called for within the stigma, discrimination, and related literatures (Jenkins & Carpenter-Song, 2009; Link & Phelan, 2001).

Method

This study was conducted with funding from the above clubhouse and obtained IRB approval from Yale University. The clubhouse was located in the Northeast USA in an urban setting. Clubhouse members were recruited during a period in which our research team spent consecutive days at the clubhouse to conduct the project. Members were notified of the study by clubhouse staff. Participant-members were selected by the research team for the qualitative study on a first-come, first-served basis. A total of 12 participants were interviewed for the qualitative portion of the mixed-methods study, which well exceeds the standard minimum sample size for phenomenological research (Giorgi, 2009; Starks & Trinidad, 2007). Each participant gave their written informed consent, including for audiotaping. Participants received $40 for their participation in the qualitative portion (consisting of one qualitative interview as described below). Demographic data are presented in aggregated form to protect the anonymity of individual respondents: Age: ~46 Years; Ethnicity: Mostly White (N = 6) and African American (N = 5); Gender: Mostly Men (N = 9).

Interview Guide and Procedure

A semi-structured interview guide was developed by a staff member with extensive experience of qualitative research in consultation with a more senior qualitative consultant (See Appendix). In accordance with standard phenomenological procedures of data collection and interviewing (e.g., Wertz, 2005), the guide was designed to elicit descriptions of concrete situations and experiences of the topics at hand: social belonging (whether inside or outside of the clubhouse) and various social determinants of health (e.g., housing, employment). However, the interview also allowed for sufficient flexibility for participants to guide the interviewer through the phenomena on their own terms. The interviews were also designed in a streamlined enough manner to accommodate members participating in one interview while already at the clubhouse, during our two days of field work. Interviews were conducted in private rooms provided by the clubhouse and averaged 28 minutes in length.

Data Analysis

The specific phenomenological approach to analysis of the transcribed interviews was as follows (Davidson, 2003; Malterud, 2012; Sells, Topor, & Davidson, 2004). Two researchers first read the full transcripts to gain a sense of the overall experience, followed by a closer reading identifying sections that related most essentially to the study topics (i.e., social connection/belonging and the social determinants of mental health). The essential narrative data were then compiled into one-page summaries of significant statements by participants that best reflect aspects salient to participants’ stories and to the study topics. This analytic procedure allows for comparison across individuals, while the full transcribed interviews remain available for revisiting and review.

The one-page summaries were, in turn, read by the larger team to develop a general structure of the experiences through group review of individual summaries, analysis of key meanings, outlining and diagramming, and selection of revelatory quotes. Team science of this form is a regular practice at our program, which values the analytic reflections of those with or without extensive training in qualitative research. Once an overall analytic framework was developed, a full description was written by a more advanced qualitative research staff member and reviewed by the group. The goal of this kind of qualitative research is to provide an essential structural description of members’ experience of the social world (and its problems) inside and outside of the clubhouse. In other words, we are attempting to describe essential features of these phenomena and their interrelations—what they are and what they mean in participants’ experience—a general structure through which experiences and narrative data become understood.

In the spirit of collaborative science, the findings were presented back to the clubhouse for feedback, first to the clubhouse membership and then to senior administrators. Although substantive criticisms were not offered, these feedback sessions did provide confirmation of resonant aspects of the findings, including those pertaining to specific everyday forms of stigma (as noted below).

Findings

While members’ reasons for attending the clubhouse (CH) were diverse and varied, a common core driver of participation was experiencing an overall environment in which one’s dignity and humanity were recognized and nourished. This sense of nourishment, embrace, and positivity came through in many forms, from receiving literal nourishing food (made my members) to everyday acts of generosity to a sense that others have your back. Yet, to be a member of the clubhouse was to have already encountered a wider world that so often discriminates, fears, excludes, deprives, dehumanizes, and pushes them around. It is from this wider vantage point that the general question about “spaces of belonging” for CH members can be more fully understood. Members of the CH are regularly or even constantly at risk of being given the message, in their daily lives, that they do not belong in some way—that they do not meet the requirements for belonging in a given place, nor are even capable of it. The differences between experiencing belonging and not belonging, between experiencing acceptance and rejection were evident. Some examples included:

• pressure to conform to societal norms and lifestyle standards vs. embrace of your ways of being

• others’ emphasizing your deficits vs. others’ emphasizing your skill-exploring and skill-building

• monitoring of speech vs. freedom of speech

Unfortunately, and despite this alternative space of belonging at the CH and expansion of possibility—an “oasis within a desert”, as one member described—those pressures from the wider world remained.

In the following sections, we first describe parameters of exclusion and dehumanization in the outer world for members (i.e., the Desert). We then look at life within the CH, discussing how it presents a radical alternative by being an affirming, accepting, and nourishing space for members (i.e., the Oasis). A key driver of this welcoming space is the membership itself, especially the interpersonal interactions and opportunities found within it, which is set off as a third domain given its importance.

The Desert: Exclusion, Restriction, and Prejudice

Life in the world, for members, came with its costs. Members described a world that excludes and harms them through oppressive norms; through dehumanizing encounters; and through multiple forms of prejudice. Implicated here is the very structure of the social world, including its exclusionary societal meanings (e.g., of personhood and value), systematically imposed on members’ lives through scrutiny and surveillance.

Excluding Meanings of Normal, Productive, and Human

Members regularly felt excluded from what is defined as normal, productive, or even human. One member longed for a girlfriend but simultaneously described the challenges of going out with friends to bars. His challenges were not only about dating specifically but about whether he would be judged as abnormal or judged for not working.

I was looking at this one girl and I wanted to go talk to her, but I was a little hesitant because I’m not working right now, so, my confidence is kind of low… Like when I meet a girl and she asks me, “What do you do for work?” I don’t want to lie. I want to be honest.

… when I go out I feel like, “Am I normal? Am I, can I relate to these people at the bar? Can I relate to the friends that I’m with?”

(C01)

Scrutiny, Surveillance, and Restriction

The above pertains not to experienced meanings in a vacuum but to meanings that are systematically imposed on members’ lives, at times with profound consequence and force. As one specific form of transmission, the day-to-day social world presented a tyranny of questions, the all-too-common questions of everyday life: the “what do you do’s” the “where do you live’s.” As indicated in the above section, these questions, rather than being benign, can serve as constant reminders of what is required of people to actually feel accepted and acceptable (A non-interviewed member who spoke up during our feedback sessions also reported this finding as resonant with her experience). The following illustrates an encounter with the question of “Where do you live?”:

[My friends] ask me so much about where do you live, what’s it like? What am I going to tell them? I mean, I live in a residence where people have senility or antisocial behavior. Some of them, not all of them. I do have friends there… I’m embarrassed to tell my friends that I live in a residence. If I had my own apartment, I would have them over…

(C02)

Living spaces, in addition to being sources of stigma, could also be bound up with systems of restriction. Specifically, the above member experienced a lack of freedom of movement at their own residence, and narrated a time when he was not allowed to secure money to pay for transportation to the CH:

In a residence, you’re confined, with rules and regulations. And I don’t want to do that anymore… the Director is very strict. I told her I wanted to open up my own bank account and get an ATM card, and she blew up at me. She goes, “When you’re living in this residence you don’t have a bank account.”

(C02)

Participants described other restrictions to their movement in the world, including in the very act of traveling to the CH. The following member feared making a scene or causing trouble, a fear presumably informed by past distressing experiences:

On my way here [from home,] I don’t want to be causing any trouble with anybody… because of my mental condition. And I just hope I can do the best I can, you know, towards other people.

(C03)

Prejudice and Racism

These stressful social encounters were compounded for members of color. One member described facing multiple systems of racism and deeply pervasive racist stereotypes, which existed alongside dehumanizing notions of people with mental illness—all with profound ramifications in their life:

When I was younger my teacher said I wasn’t going to amount to nothing…I was just going to be in and out of jail… because I was Spanish and Black [and] my family, they don’t understand it because my thoughts are different. Cops, racist. They want to throw you in jail…That’s what they’re trained to do. Lock you up and kill you. When people know you got a mental illness they racist anyway. They be like you’re crazy. Oh, give you medication, calm down…Being Black they look at you like oh, you’re a thug. Or you’re a drug dealer…You want to rob me…Or you’re going to rape me…Or you’re unintelligent. Or you’re just looking to get high…All those stigmatizations…there’s racism wherever you go. People don’t understand you when you’re Black and Spanish…They don’t understand what you go through in your neighborhood… I cope with it…[by minding] my business… I don’t talk to nobody on the street…If I don’t know you I keep it moving.

(C04)

Other social stressors and oppressive encounters discussed by participants included being put down or teased at school (C04, C06; C12); being viewed as “weird” (C07); being judged about one’s eating style (C05); and facing a never-ending “race” outside while being categorized and stigmatized (C08).

An Oasis: A Safer, Supportive, and Nourishing Space

Participants overwhelmingly described the CH in far different terms, which painted a stark contrast to the “desert” described above (i.e., “an oasis… within a desert,” C09). Though not perfect, the CH was a place where members could feel and be human. Members’ initial reasons for coming to the CH were not systematically explored, but once there, it was clear that the participants of this study experienced reasons to keep returning.

“Safer Space”

The CH was an environment of care and acceptance, and as this member succinctly observed, a safer space than what is usually encountered in the world.

I would not say safe space, because no space can be completely safe. But it is a safer space for people with mental illness, without focusing on mental illness. With focusing on living a productive, healthy life and being able to love and find joy, and also be sad and live in your feelings, and survive.

(C05)

Related to safety and security was the low or no pressure environment that some members described as providing them relief, which they often could not find elsewhere.

When I’m isolated, I can’t cope. I can’t cope with the stresses and the strains. Like when I’m out and about, like when I’m coming to [the CH], it’s a difference. There’s not much pressure.

(C03)

It’s a peaceful…no pressure… environment… It’s not a solution for all your problems, but it’s something to do when you’re bored.

(C11)

A Person of Value

Beyond safety and security, there was value. Participants described being valued for their labor and contributions—supported rather than rejected. The participant who had struggled against stigmas and excluding meanings in the working and dating cultures described the culture at the CH as more affirming and accepting.

It’s kind of stressful not having a job, but when you come to [the CH] that all goes away. They keep you busy, they give you projects to do… they have snack time in the afternoon where the wellness cart goes around… And so, you know, it’s a very productive day at [the CH]. When you come here, they always keep you busy and they ask you, “Do you need help with anything?” They have jobs at the employment unit… [And] when you come to [the CH], it’s a place where anyone with mental illness will feel accepted. They help you.

(C01)

Beauty and Nourishment, in Many Forms

One participant also described various ways in which beauty manifested at the CH, including the physical space of the building, the natural beauty of the CH farm, and the joy in eating healthy food made for members, by members.

Nourishment too came in many forms, and it was evident that members experienced more than mouths being fed. The following participant described these multiple forms of nourishment, including fostering creativity, connection, and community, which contrasted with a limited focus on labor-oriented productivity they found elsewhere in society.

We need good food, but we need something deeper that doesn’t come on a plate. Stuff that feeds our souls and [the CH]…[has] figured out a way to feed those other aspects; our spirit, our soul, our connection, our desire for community, and our desire to ideate and learn…It makes us feel that we’re feeding those parts of ourselves that [aren’t] labor oriented… We’re multidimensionally oriented…so we can do other things…with our capacity to create.

(C10)

Overall, the environment facilitated greater freedom to be, move, eat, speak, heal, “advocate for [one]self” (C04), and to embrace what one actually thinks and feels.

Together: Building and Sharing a Compassionate World at the Clubhouse

There was the built beauty and comforting embrace of the environment; but, to be sure, this holistic environment, and its sense of belonging, was fundamentally tied to regular person-to-person encounters. Relationships formed the building blocks of the clubhouse space.

Compassionate Encounters

The following narrative depicts how everyday questions could now be experienced as compassionate rather than tyrannical or rejecting:

People have emotional problems here, most of the people that attend here. And it seems like people who have emotional problems are more compassionate than people who have never really experienced emotional disturbances that much… I was employed part time, and when I came to [the CH], they would say, “How’s the job? How’s everything going with the job? Do you like it? What do you do?”… I just like the people here. I feel comfortable.

(C02)

Recovering Personhood through Others’ Affirmations

Name-calling, too, took on an entirely different meaning, as an expression of familiarity within a context of togetherness:

I can be myself…It doesn’t matter what I’ve got on, people are going to be nice to me… They even call me [by a nickname]. Nobody has ever called me [by a nickname before].

(C12)

With and through others, members could discover the freedom to be, to be a person or human that is valued, recovering a sense of personhood.

I like coming [to the CH], because I’m around my peers….people that care about me, listen to me, teach me…support me in my work goals, and don’t treat me like I’m retarded. [They treat me] like a person…If I say something, it’s not stupid…or [if] I’m running a group, it’s, “You did a good job.” It’s not…“Why did she do that…[The CH] helps you feel smart…[and]…like you’re a person…that [is] capable of doing stuff that other people [do].

(C12)

The member above and below also described feeling more like a productive person, receiving positive feedback during the process [We have specifically avoided the word “productivity,” to differentiate their sense of productive from notions typically associated with contemporary systems of capitalism that often exclude these members].

… it’s a very opening environment, a very constructive, it’s a very friendly place…they ask me, “What do you want to do” [and] they have all these different options. And it’s not like staying home in bed all day feeling depressed. It gives you somewhere and gives you something to do and a positive thing… it’s a very productive day at [the CH]… I like doing [one particular job] … and they always tell me, “You’re really good at [it].” So, they let me do it and I feel like I belong here. Like I have a place here. Like I’m a piece of the pie. You know, like I’m a piece of the puzzle.

(C01)

Sharing a World Together

Not being a part of the mainstream working world presented challenges for some members in not only experiencing oneself as productive and valued, but in being able to socialize with others who are a part of it, especially in fitting the workaday routine and hours. The following member experienced life and social relations within the clubhouse as fundamentally different than that.

I stopped hanging out, a lot of my older friends, they didn’t understand my diagnosis as much. I was still friends with them… a lot of them have jobs already, so, it was hard to get in the routine of, getting them to hang out on the weekdays was hard for them, because they were working. But my friends at [the CH], it’s different because …they understand what you’re going through. And they’ve been there, like if you ask, I ask some of my friends, what meds they’re on and they tell me. And it makes me feel like I belong. I can relate to them better. And they’re all stable and high functioning too, so, it gives me a chance to socialize with people, like my peers so to speak. People who have gone through stuff that I’ve gone through and who are still doing good and still fighting the good fight.

(C01)

Sharing a world together took on an aesthetic quality as well. The following member observed how sharing and offering meals can not only please the senses but can enrich one through the fellowship that gets experienced.

And when you’re creating food, for people that you identify with, for people you find community with and love with, you create that food with love and it just tastes better. And you get to sit down and fellowship over that, that beauty. And it just fills you up and makes you feel good and makes me feel good.

(C05)

The above focus on creativity in community resonated within other members’ experiences as well. The member in the previous section who discussed multiple forms of nourishment also expressed appreciation of being given encouragement and a platform by staff to learn public speaking, which this member, in turn, wanted to employ towards helping other members. “And I see the value where I can help them, as an ambassador, help the people like myself” (C10). Creative and artistic expression took on many forms from writing and sharing activist poetry with others to presenting anti-stigma artwork: “I started painting for them and exhibiting. And since then my life has a whole lot more inspiration and meaning. …I am helping… others, ill or not ill, to understand each other in society.” (C02)

Family, friends, and other social organizations also could provide spaces of welcoming, value, and worth (and, unfortunately at times, additional shame). Further, members varied with respect to whether they viewed the clubhouse as occupying the central place and goal in their life, or whether they looked to the clubhouse to help them get to a different place.

Overall, members experienced the CH as a welcoming place to continue to learn skills, to feel valued, to contribute to a greater cause and to others, to be themselves, and to help one another. Members did describe some limitations, such as a hierarchy, overcrowding, and not being able to get jobs they desired. In addition, some wished there would be more identity and culture-based groups and programming. However, they did differentiate the experience at the CH from the experience at other mental health programs, with the latter focused on the “problem of mental illness,” but the former “centered on the solution, not the problem.” As one member concluded:

This is not an outpatient treatment place. This place is…more for socializing…[and] you can educate yourself. There’s so many different things that you can do to keep yourself and your mind from…racing, and it actually makes you feel happy…It’s like a safe haven for me… a peace of mind…[for] my mental health….When I come it’s more relaxed…being around my peers, people that like me …[and] don’t think they’re better than me.

(C12)

Discussion

The findings revealed that the issues of social belonging and the social determinants of mental health, in clubhouse members’ experience, were related to the very possibility of personhood in the midst of dehumanization, freedom in the midst of unfreedom, and belonging in the midst of social rejection and exclusion. Members were up against deeply ingrained social meanings that defined what was normal, productive, or even human, which harassed them through several regular avenues in the world, such as: a tyranny of questions (what do you do; where do you live), a lack of freedom of movement at their own residence, fears of making a scene or causing trouble, and the many forms of prejudice and racism. The clubhouse environment was experienced in a far different way, like an oasis in this desert, imbued with care, acceptance, nourishment, helpfulness, beauty, and an environment that facilitated greater freedom to be, move, eat, speak, heal, self-advocate, and to embrace what one actually thinks and feels. They learned skills, felt valued, contributed to a greater cause and to others, and helped one other.

Past research has given much attention to the beneficial aspects of the clubhouse environment, with relatively less attention to the stigmatizing world outside the clubhouse environment. One of the main contributions of the present study—with its phenomenological focus on social meaning and structural delineation—is a more explicit understanding of how specific oppressive features of the surrounding world (e.g., social meanings of value, personhood, and productivity; systems of scrutiny, surveillance and restriction; and prejudice and discrimination) relate directly to how and why clubhouses are experienced as beneficial and an oasis in response (e.g., a safer space; a sense of being valued in the face of these systems of exclusions; and sharing a world of compassion and beauty together). These findings therefore situate past, siloed knowledge on the discrimination faced by clubhouse members in the wider world within this broader interrelated structure. Lastly, the findings also support qualitative literature showing pervasive stigma towards people with mental health challenges as embedded in, for instance, employment and courtship cultures (e.g., Jenkins & Carpenter-Song, 2009).

We introduced this work with discussion of loneliness and social isolation. These phenomena, for this community, ultimately pushed us back into examining the determinants of these social determinants of mental health, that is, what is contributing to the loneliness and social isolation in the first place. What we found were intensely sedimented meanings and definitions of personhood within wider society, as indicated above, and everyday ways that members were told they do not fit them. At stake were fundamental deprivations and restrictions (of movement, of speech, even of eating), and denials of belonging not only to the surrounding community, but to the human community. All of these above experiences fundamentally concern issues of power (Link & Phelan, 2014; Phelan, Link, & Dovidio, 2008). In their work on “stigma power” vis-à-vis mental illness, Link and Phelan (2014) described how the powerful are able to maintain their position through a system in which the relatively powerless are kept down, in, and away, through explicit domination, codified rules, unwritten norms, daily indignities, sequestration, and, drawing on Bourdieu, the hidden workings of power. Thus, in addition to power, the experiences detailed in this study fundamentally concern the domains of dignity, human rights, capabilities, freedom (Sen, 1998), and the quests to achieve them, which are increasingly the focus of advocacy within mental health. The concept of “recovering citizenship,” for instance, has been offered as a mental health framework to, as Rowe and Davidson (2016) stated, necessarily include socioeconomic and political efforts addressing issues like poverty, racism, and people’s “right to full and valued participation in society” (p. 20). The current findings too lay bare this need to focus on the structural and sociopolitical conditions that undermine the lives of people struggling with mental health challenges.

Oasis in a desert, but to be sure, the desert remains. What additional roles can clubhouses and their members play in this ongoing collective march towards de-desertification? They are already doing much. Findings suggest ways in which members themselves, with the clubhouse as surrounding support, care for the dignity of one another, interpersonally and in the commons, through everyday acts of kindness, writing activist poetry, showing concern, checking in, finding ways to honor each other’s talents and contributions, and participating in aesthetic experiences of art and architecture—and the beauty of community and fellowship. There were also avenues towards explicit sociopolitical or civic development, such as through platforms for public speaking and activist art. Findings also suggest, however, that despite the transformative experiences that take place within the clubhouse, the surrounding world continues to be structured in harmful, oppressive ways towards its past, current, and future members. There may thus be a need for more clubhouse opportunities for collective sociopolitical development, agency, and outward-directed action and advocacy. Mandiberg and Edwards’ (2013) discussion of the clubhouse as a space for experiencing the power of the collective and of collective identity, in the face of stigma and discrimination, is relevant, as is Tanaka and colleagues’ discussion of empowerment through clubhouse participation and belonging (Tanaka & Davidson, 2015a, 2015b; Tanaka, Davidson, & Craig, 2018). The findings here support efforts to extend these collective possibilities towards changing the stigmatizing community itself. Perhaps community engagement could even be a new work unit within clubhouses. Such developments would be responsive to recent wonderings and concerns in the literature of whether the belonging, community, and recovery-promoting benefits within the clubhouse could be possible outside of it. Gumber and Stein (2018), for example, discussed ways in which clubhouses may expand their work through explicit partnerships with community organizations and joint events with the community at large. As Raeburn and colleagues (2016) succinctly concluded: “Whether recovery is experienced by clubhouse members in wider society, may well depend on supports and opportunities outside the clubhouse” (p. 173).

Limitations

The study was limited to one clubhouse and to members who were still in attendance. Members who have benefited from clubhouse participation may have been more inclined to participate, and the participant pool had disproportionately more men. Further, the interview guide did not inquire specifically about unmet needs (a topic better addressed in a separate, participatory research project) and was relatively brief in nature compared to longer-form phenomenological interviews. Knowledge and generalizability should be considered within these limitations. There remains a need for future research to focus directly on accompanying clubhouse members in their lives outside, through ethnographic and community-based methods. Future research is also needed to systematically evaluate how specific markers of the desert-like conditions relate to, and are improved by, the oasis qualities of the clubhouse.

Conclusion

Members described this life outside as a desert, a place of struggle, and of hiding in the shadows, from view and predator, with movement restricted, and nourishment rationed. Within the clubhouse, they instead found a beautiful oasis that fed and rejuvenated their sense of personhood and dignity—and yet the desert outside remained. Thus, the clear suggestion from this research is that the original determinants of exclusion, such as definitions of what is normal, productive, and human, be made compost, mere fertilizer for renewed spaces of growth and beauty in the world, where vibrant and verdant possibilities flourish. The question moving forward from the present study on clubhouses is therefore: what more can be done about the desert, to help change it for all who suffer its heat and deprivation, including those who do not have access to such an oasis?

Public Policy Relevance Statement:

Members who attended a psychosocial clubhouse for mental health were able to experience nourishment, dignity, reaffirmed personhood, and a sense of beauty, but oppressive meanings and structures in the wider world remained. These findings suggest the need for clubhouse and broader mental health policy to focus greater attention on advocacy, community engagement, and sociopolitical issues, including societal restrictions on members’ movement and speech, and the constant scrutiny and questioning they endure.

Appendix

Interview Guide

1. How have things been going for you lately?

2. Are there places where you feel like you belong?

3. Are there people in your life you like to spend time with? What are some of the more enjoyable moments?

4. What do you like about coming to [this clubhouse]?

5. What was life like before coming to [this clubhouse]?

6. What was your [housing, employment, neighborhood] like?