Introduction

The emergence of modern mental health social movements critiquing psychiatry can be traced to the 1960s and 1970s, as mental health activists sought to foster supportive environments for those who had been negatively affected by psychiatric interventions—with regard to trauma associated with forced treatment, side effects of prescribed psychotropic medication, and the stigma of a mental illness diagnosis (Jones and Kelly 2015; Dubrul 2014). Drawing from strategies in patients’ rights movements, self-help movements, feminist movements, disability rights movements, and recovery-oriented movements, mental health activists began to experiment with collective strategies to address perceived social injustice associated with their psychiatric treatment (Lewis 2006; Starkman 2013). In recent decades, user-generated content on online forums, social media, and other digital forms of communication have enabled these and other grassroots mental health social movements like consumer/survivor/ex-patient movements, user/survivor movements, and Mad Pride movements to increase their visibility and member participation, as the Internet became a porous platform for easily sharing information and social engagement (Houston, Cooper, and Ford 2002; Martin 2010; Bossewitch 2014; Fletcher 2018). The formation of in-person and digitally-mediated communities of care is often seen as both a form of resistance to and a problematic complementary of professional interventions from psychiatric, psychological, and social work disciplines (Andersen et al. 2017; Fabris 2013; Klaw, Huebsch, and Humphreys 2000).

Although these movements are incredibly diverse in nature, one of their core tenants—mutual aid—has come to be associated with non-hierarchical relationships, self-determination, positive role modeling, choice within mental health service provision, shared accountability, and strong communal ties as ethical alternatives to traditional psychiatric services (Mead, Hilton, and Curtis 2001). Broadly describing mutual aid organizations, Nelson, Ochocka, and Griffin (1998:889) define them as “settings in which people with a problem in living or a common experience come together on a voluntary and equal basis to share their experiential knowledge and to provide and receive informal social support.” Mutual aid groups for mental health may include social support for those experiencing mental distress, harm reduction strategies for tapering off of psychotropic medication, advocacy for community-based alternatives to psychiatry, and media that celebrates mental diversity (DuBrul 2014). The hallmarks of mutual aid within mental health are voluntary support for those with lived experience of mental distress and the belief that self-defined recovery is possible for all who have been diagnosed with mental disorders—including mental illnesses considered to be severe and persistent (Chamberlin 1978; Mead and Filson 2017). Within these spaces, many activists shun bio-psychiatric language for diagnostic categories and use alternative language to describe and normalize pathological terms like “schizophrenia” in exchange for laymen’s terms to indicate symptoms experienced, such as “hearing voices” (Watkins 2008). Moreover, mutual aid communities have fostered cultural shifts from individual pathologization of “mental illness” towards alternative (non-biopsychiatric) frameworks to grapple with mental distress (McNamara 2013).

Over the course of a year (2014–2015), I collaborated with a mutual aid group located in a small city in the United States (referenced in what follows as “the Collective”). The Collective was loosely affiliated with The Icarus Project—a radical mental health support network and media project established in 2002. As a part of my dissertation fieldwork, I spent 8 months meeting with Collective members and participating in their weekly meetings and other events they hosted. My findings from ethnographic research within the Collective revealed that attendees’ occasionally felt a sense of unease during their interactions with each other. Within group encounters, attendees grappled with the ambiguities inherent in responding to those in mental distress; and they sought to “establish personal boundaries” and “create safe spaces” as a way to curb anxieties that presented themselves. In what follows, I draw from the fields of health geography, public health, anthropology, and social theory to contextualize boundary formation within affective atmospheres—including socially, digitally, and emotionally entangled environments (see Price-Roberston, Manderson, and Duff 2017; Anderson 2009; Jones 2009; Weiner 2011; Stockdale et al. 2007; Parr and Philo 2003). In particular, I discuss boundary formation as a multiplicitous expression and theorize the use of such rhetoric as a method to create blockages within mutual aid assemblages—within the technologies, physical spaces, interpersonal relationships, forces, and milieus generated throughout digital and analog entanglements that form communities of care.

This paper analyzes a series of interviews, focus group discussions, and digital exchanges about the use of “boundary formation” within individual wellness practices and shared decision-making within the Collective. I argue that boundary formation serves as a metaphor of asserting personal agency and personal well-being as a form of self-care and as a form of positive withdrawal, what Ellen Corin (1990) defined as a “position ‘at a distance’” to traditional modes of psychiatric rehabilitation. Its use can indicate the recognition of social pitfalls associated with intense encounters with fellow Collective attendees; and it can also serve as a rhetorical tool to indicate tentativeness, what Tania Weiner (2011) describes as difficulty predicting what wellness practices would best serve those diagnosed with mental illness in an imagined future. I outline broader implications of boundary formation language within mental health activism and clinical practices, and I conclude by noting the limitations of this study and discussing boundary formation as an expression of the challenges faced by a mutual aid assemblage in providing and receiving support.

Origins of Boundary Formation

The rhetoric of “boundary formation” has drifted from the fields of psychology and psychiatry and discussions of clinical boundaries that involve issues of liability, professionalism, co-dependency, and safety (Gutheil and Gabbard 1993), into academic scholarship, popular literature, and colloquial speech about personal well-being, emotional burnout, and compassion fatigue among health professionals and self-help groups (Cieslack et al. 2014; Melvin 2012; Miyamoto and Sono 2012). Within mutual aid practices studied, I found the use of the expression “setting boundaries” often emerged from ambiguity around supportive strategies with those in distress and a limited capacity to provide emotional labor associated with care. Appropriate communication strategies were made even further obtuse by activists’ attempts to avoid sanism—or intolerance for altered mental states—as a form of discrimination against those who have non-normative mental characteristics (Icarus Project 2015a, b). For example, this tension may play out when communities of care must decide whether to delete or highly moderate forum comments made by those in mental distress that others may find to be offensive and discriminatory. To allow offensive language could be “triggering” for the rest of the group, but to silence someone in distress may also not be the most supportive way of addressing an individual’s need and affirming the psychic distress that they are experiencing. Methods of addressing this double bind are highly circumstantial—culturally, temporally, and geographically-bound and often digitally-mediated; and collective resolution depends on a number of factors—including the familiarity of moderators with the person in mental distress, the longevity of their relationship, the mutual aid group’s past history with challenging interactions, the availability of other social resources, and group reconciliatory and accountability processes. Given the many traumas and micro-aggressions experienced by those in mental distress, some within the Collective studied found it incredibly challenging to navigate social interactions without offending others or worsening their own mental states.

Blockages Within Mutual Aid Assemblages

The formation of boundaries within mutual aid groups like the Collective can be contextualized within individual responses to social engagements, the mediums that facilitate such sociality, and the transformation of social networks as a whole. Assemblage theory, first articulated by Deleuze and Guattari (1987), and expanded upon by Latour (2005) and Delanda (2006) conceptualizes affective milieus as generated through a plethora of human and non-human entanglements, ones that connect, disconnect, regroup, and dissipate in responses to forces and flows that affect them. Assemblage theory refutes static or universal definitions of social relations, health, and wellness practices; rather, it embraces chaotic ties and movements that link individuals to social forces and acknowledges multiplicity within possible lenses through which to understand phenomena and experience the process of “becoming well” (Duff 2012:108). Within this framework, milieus of health and well-being that emerge from interpersonal dynamics, devices used for digital communication, collective capacities, social intensities, and individual entanglements within communities of care must be considered as being greater than the sum of their parts; and the ways in which group dynamics evolve and the ways in which individuals within such assemblages experience the world around them must take into account a multiplicity of factors that often escape representation (Andrews, Chen and Myers 2014). The physical meeting spaces, technologies that enable digital correspondence, affect(s) that emerge from social encounters, boundaries formed in response to mental distress, bodies that later articulate feelings generated in relation to each other—these are just some of the components that create assemblages of mutual aid.

Assemblage theory within mental health scholarship has sought to destabilize individual narratives of mental illness and teleologies of recovery through consideration of the natural and social interactions, energies, signs, events, and processes that make up a sense of well-being (Duff 2016; Fletcher 2016). With regard to assemblages formed within mutual aid communities, individuals can be considered as being deeply entrenched within, affected by, and diffuse through technology. They can be considered in relation to varied stances towards psychiatry, health social movements, group dynamics, and other flows and blockages that form the particular environments they inhabit. Mutual aid assemblages discussed in this article refer to communities of care involved in alternative forms of mental rehabilitation and recovery, and the technologies that facilitate group dynamics to evolve in digital and in-person networks. Blockages within such social assemblages, such as those imposed through the rhetoric of “boundary formation” as a justification for social withdrawal, serve to redirect, rearrange, or restructure flows and intensities through which collective engagement in mutual aid practices emerge. The stories that Collective members tell about the forces wrought in and through them and the forces and blockages they themselves exert upon the world are poignant productions of how people interpret and enact mutual aid practices within social assemblages and flows, and how social structures such as in-person meetings and digital communication affect communal milieus. As mental health activists interpolate and are interpolated by technology, social engagements, and the rest of nature, mutual aid practices are channeled, dispersed, and become diffuse within communities and technologies of care and beyond.

Method

This paper draws from ethnographic fieldwork collected as a part of my dissertation research with approval from an Institution Review Board (IRB) of the University of Texas Medical Branch in Galveston. The primary goal of the larger study was to identify and explore feedback loops between in-person and digital communication that enabled or thwarted forms of mutual aid support amongst Collective members. A secondary aim was to explore the experience of social dynamics that emerged within a digitally-mediated radical mental health community and its effects on belonging and community.

Recruitment

In January 2014, I initiated contact with the Collective through a series of emails, phone calls, a short video introduction that I posted on my research blog and shared with the group, and a week-long site visit several months prior to moving to their location. During my site visit in March 2014, I identified myself as a social researcher with lived experience of mental distress and as a caregiver to a family member who rejected a diagnosis of a serious mental illness and associated psychiatric and psychological treatments. Through a series of conversations with the Collective and one-on-one conversations with attendees interested in becoming research participants, I explained the goals of the study and proposed methods for data collection. The Collective provided a letter of support indicating their willingness to engage in the study, and they submitted the letter as a part of my application to the IRB. Due to the multiple mediums and forms of data collection proposed in the study, the IRB approved a consent form for the collection of interviews (including focus group interviews) and a separate consent form the collection of visual representation (via video and photography). A consent waiver was used for digital data, including text messages, email correspondence, posts on social media, and participation in online forums.

Sample

Most Collective meetings consisted of five to twelve people, with facilitation responsibilities shared between one or two attendees. Regular attendees were between their late 20s and early 50s in age. Many benefited from local social service programs, and some received some financial support from family members. All spoke English and had some technological literacy and access to transportation. Collective attendees self-reported a wide range of diagnoses—including schizoaffective disorder, schizophrenia, bipolar disorder, depression, attention deficit disorder, dissociative disorder, and borderline personality disorder. 14 participants were recruited for this study through word of mouth, email invitations, a video blog, and the Collective’s webpage about this research project.

The Collective’s digital spheres included a Google Group, a WordPress website, a Facebook group, and a phone number list. Over the course of several years, the Google Group became a casual space to post their own thoughts, share art (including poetry, photographs, videos, and music), pose questions to the group, provide support, and contribute to conversations that would then feed back into the in-person meetings. Discussion threads included topics related to event planning, organizing capacity, updates about this research project, gender dynamics in group meetings, facilitation of listening spaces, and announcements about local events around town. The same volunteers who frequently facilitated group meetings also moderated these discussions online.

Data Collection and Analysis

Research participants from the Collective engaged in a series of semi-structured interviews, monthly focus group discussions, and visual representation, with the recognition that their likeness would be included as a photo essay chapter within the dissertation. Interviews and focus groups were conducted at the community center that hosted weekly Collective meetings, participant’s homes, my residence, or through email correspondence. Over the course of my fieldwork (June 2014–January 2015 and May 2015), I took on a supportive role in co-facilitating meetings on occasion, volunteering at community events they hosted, and participating in informal gatherings with Collective members. In addition, I observed group dynamics, engaged in face-to-face conversations with research participants, maintained a presence on online forums, and participated in other activities as opportunities presented themselves.

As I gradually became a part of the Collective, I noted instances that confirmed, disconfirmed, or augmented aspects of my own theoretical attention to assemblage theory. Drawing upon techniques from situational analysis, as described by Clarke (2005), I built upon a priori theoretical concepts, remained open to novel or emergent themes and theoretical insights from participants’ experience of social and technological entanglements, and refined my analysis over time. Special attention was given to the affective dispositions enacted and described by participants throughout the study; and over the course of my fieldwork, I became more attuned to the way I presented myself to others and the ways participants responded to me and to each other. Informed by sensory ethnography (Pink 2009) and affect-based qualitative research (Dewsbury 2010), I noted instances in which social and material forces influenced participants’ emotional valences (as well as my own); and in our conversations, research participants and I discussed moments of tension and other affective intensities and resonances amongst objects, places, digital communication, and social encounters related to the mutual aid assemblage formed within the Collective. A constant comparative method to analyze the social dynamics recorded enabled me to test emerging concepts, confirm emerging insights, and note instances of repetition, variation, and differences in the data. Theme saturation was reached after 6 months of fieldwork, after categorizing incidents applicable to themes that emerged, coding and analyzing data, and describing results in relation to assemblage theory (Glaser and Strauss 1967).

After I completed the first draft of my dissertation, I solicited feedback from participants on my writing and visual representation, including the quotes, photographs, and analysis that I planned to include in the final version of my dissertation; and we co-edited sections about them for clarity and confirmation that they felt comfortable with their portrayal. Reviewing the data several times over the course of my fieldwork, return visits to the community, and a slow revision process have given me greater insight into the linguistic variance in instances in which boundary formation was deployed, micropolitics involving the Collective’s provision of mutual aid, and other communal dynamics of mutual aid. Data collected over 500 h of participant observation—including fieldnotes, interviews, and personal correspondence—informed a preliminary thematic analysis of the ethnography. A review of findings is reported elsewhere (Fletcher 2015), and this work informed my conceptualization of boundary formation within mutual aid assemblages.

For the purposes of this paper, I decided to narrow my focus to the use of boundary formation within the Collective and analyzed this topic through an iterative process involving the triangulation of data collected, fieldnotes, and a review of the literature on assemblage theory within mental health scholarship (Glaser and Strauss 1967). I re-analyzed transcripts of 27 recorded interviews with 14 participants (each lasting 1–3 h), 4 recorded focus group discussions among Collective attendees, and 22 emails sent as a part of the discussion thread related to a case study detailed below. All focus groups and interviews were transcribed, and I used open coding of empirical data to note instances in which informants used the rhetoric of boundary formation to describe their reasons for limited engagement with the Collective (Charmaz 2006). Axial and selective coding enabled me to narrow codes and identify the three themes of boundary formation as a form of self-care, a move to protect oneself or others in times of mental distress, and as a response to communal needs. With respect to these themes, I selected four cases that illustrated common concerns of those involved in the Collective, instances in which their social and technological relationships that transformed over time, and the multiple ways they framed their engagement or disengagement from such settings. These instances are contextualized within evolving social dynamics associated with mutual aid assemblages.

Ethical Considerations

Given that research participants consented to including visual representations of themselves (via photograph and video) in the original research project, confidentiality was not a primary concern for most research participants. Nevertheless, I have used pseudonyms in this article, in accordance with federal privacy regulations; and I have omitted references to the location of the Collective for informants’ privacy.

Results

Anxieties caused by social engagement spurred Collective members to set limits for themselves online and in person and to discuss such boundaries in terms of self-care or communal well-being. Such use of boundary formation often emerged from instances in which people found themselves to be “spread thin” interacting with others; in circumstances in which people described their thoughts, emotions, reactions to trauma, non-consensus realities, etc. to an extent that later caused them shame or remorse; or in situations in which they felt as though they provided support to an extent that their own mental well-being was endangered. Such delicate positions often led attendees to feel as though they were not providing enough support for each other, even while they often felt overextended by the forms of support they did provide. For this reason, balancing personal needs for connection with concern for group dynamics was a continually iterative process.

Self-Care in Mutual Aid

Collective attendees often vacillated between the mediums they used to connect with others, depending on their present capacity and preference to interact with other. They described both digital and in-person sociality and social withdrawal from mutual aid encounters as forms of self-care.

Steven, who is in his early 30s and grew up with computer technology, indicated that he enabled his Facebook account when he was feeling stable and disabled it when he felt overwhelmed. For a few months, when he was preoccupied with shifts in his personal life, he also shut down his blog and later reactivated it as he began to feel more settled. He found more passive means of interacting online (such as scrolling through news articles, blogs, how-to guides, etc.) as being much less taxing on him, just as he considered not visiting with people as being more comfortable than spending time with them. Despite his uneasiness in social situations, Steven noted that he became more active in setting up times to meet up with people one-on-one and in-person group settings for a time. Similarly, he became more comfortable uploading his writings online and considered this work to be a significant part of his identity as a former patient concerned about the hyperpsychiatrization of children and adolescents.

However, Steven found the “atemporal” nature of such conversations to be exhausting—a depletion of his “social capacity.” Describing his dislike of waiting for responses to trickle into to his inbox or text messages, Steven used the metaphor of energy expenditure to describe how he understood the challenges of responding to conversations that drag on and become a mental encumbrance throughout his day. He explained,

The fact that we don’t use cell phones to call anymore means it takes longer to get anything settled, you can’t quickly in like thirty seconds say, “Can we do this, be here.” It takes hours to finish a conversation. You are waiting, so your energy is spread throughout the day. It is spread much thinner—you can’t direct it in a focused way. So for me I have to step back, because it is this draining. So much so that I am in a space where I just don’t want to talk to people and need to limit my relationships because I can’t handle being spread so thin, energetically. But for me it is all these loose threads going, and you don’t know when they are going to be tied up.Footnote 1

His anxiety waiting for Collective members to respond made it challenging for him to initiate conversations; and when he did engage in such modes of communication, he often wondered if he was engaging sufficiently even while he also sought to reach the conclusion of such dialogues as quickly as possible. While he has served as a support for many who found solace and hope in learning about his success tapering off psychiatric medications, he also recognized his limited mental capacity for interacting with others and often turned off his phone for a period of time, as a way of creating a limit to draining conversations. From one vantage point, he saw these forms of boundary formation as a sign of wellness, that he can anticipate his need for solitude. At the same time, he disliked that he now thinks about the ways that Collective attendees might perceive him and that an imagined audience now inhabits his mental space—the critiques of whom may influence his thoughts and actions.

Other Collective members found boundary formation to be very useful, not just as an expression, but as an action—a strategy to sustain their personal growth over time. A well-known blogger and mental health activist, Val too found in-person and digital spheres to be a place for mutual aid and for the practice of boundary formation as she tapered off psychotropic medication, an arduous process which kept her bed-bound for years. During that period of her life, she used the Internet as a “lifeline” to gain information from others having similar side effects to drug withdrawal. In addition to blogging, Twitter became a place for her to learn about herself, to gain information rapidly, and receive support during her darkest times. Describing the Internet as a reflexive space, Val stated,

I can make boundaries now in the “real” world in ways that I was never able to, before I learned how to manage dealing with thousands of people paying attention to me. And it taught me to make really good boundaries, I don’t hesitate to say "No" when I need to and I put up really strict boundaries online, because too many people want to interact with me. So most people can’t reach me by email because I don’t make it publically available.

Val credited her entanglements with the digital world as a proxy for in-person sociality. What is more, as she transformed with technology and with others interacting on digital spheres, she noted that she became more apt at recognizing her own needs and limits within social encounters, crafting future social engagements as she saw fit, and describing her digital limits as a form of mindfulness.

Because she often found the Collective to be too stimulating and because she was usually able to function better in the morning (as opposed to the late afternoon when meetings are held), Val indicated that she set a boundary for herself only go to group events when she felt capable of being around others’ “energies.” She preferred attending small social gatherings (such as the focus group discussions I hosted during my fieldwork) and continued to apply the social skills she learned online in her relationships with other Collective members. Calling such boundary formation a “survival strategy,” Val reported that she performed self-care through self-imposed limits on her sociality.Footnote 2 And while some members wished she could be more involved in their meetings, they also often viewed her actions in boundary formation in terms of her individual well-being and as an inspirational model for their own recovery.

Pitfalls of Mutual Aid

Within mutual aid practices, providing and receiving support in-person or online may also form taxing milieus, ones that overextend personal or group capacity to care for each other. Collective attendees in mental distress indicated that they felt a sense of uncertainty in wanting to reach out to others, yet fearing that their actions may be misconstrued in a way that challenges their continued presence within the community.

Beth, a Collective attendee in her early 40s, vacillated between appreciating the connections she found through mutual aid communities and also recognizing such assemblages as having the potential to be dangerous to her well-being. When I first met her, Beth was experiencing extreme sadness and barely spoke during group meetings. Over the course of several months, she began to feel higher states of energy and talked with me about her varied use of social media, after being hurt by a participant on the Icarus Project forum who questioned the authenticity of her online persona. In her slower states, Beth was incredibly sensitive to such critiques, because she herself wondered if she is less “authentic” during points in which she feels a “flatter affect.” She thus explained her reasons for engaging with Collective members face-to-face,

I did find in the past it has been easier for me to express myself online than in person, and I found it a really comfortable place, but recently I’ve gotten burned online in several ways. So now I’ve gotten very paranoid. When I enter a manic episode, I tend to post a ton of stuff on Facebook and send really weird e-mails to people. And so I’m still experiencing quite a bit of shame from the last time I did, and so I have hardly posted anything on Facebook since last year, because I have just been so ashamed of that whole person that came up.Footnote 3

Even though she recognized this tendency to post problematic statements on Facebook and did not necessarily identify with the things she posted during heightened phases of energy, Beth found herself in a similar situation during a frenzied period in the winter of 2014–2015. While hospitalized in a psychiatric ward, she asked Steven (her friend quoted above) and me to help her delete questionable posts from her page. A few weeks later, she became upset that we had deleted her statements and did not remember that she asked us to do so. She told me that she felt silenced and misunderstood; and although we were able to resolve our differences, I began to realize firsthand the many ways in which digital communication (or its censure) can exacerbate suspicion of others. I learned that Beth viewed our form of mutual aid to be harmful or hazardous while she was undergoing mental suffering and distress. In this manner, the fragmented aspects of Beth’s past, current, and future self-representation online were caught up in her friendships, non-consensus realities, and larger existential questions of how she could reconcile multiple perspectives of who she is with the “whole person that came up” during her last “manic episode” and who she might become when her mood and perceptions fluctuate dramatically. This difficulty predicting how her future mental states would affect her relationships online made it challenging for her to reach out for mutual aid through digital mediums or navigate face-to-face encounters with certain Collective attendees as well; and over time, she found it increasingly difficult to maintain strong friendships with fellow Collective members.

Responding to Communal Needs

Following the death of a Collective member who completed suicide (over a year before I began fieldwork), the Collective remained particularly sensitive to their present abilities to respond to members’ request for social support. Although members came to terms with this loss in a variety of ways, many members indicated that they felt that the stakes were too high for them not to provide support for fellow members in distress. Still, some resented being “on-call” constantly or feeling as though there could be severe consequences to ignoring or limiting their responsiveness to posts or messages on social media, emails, phone calls, or text messages. This sense of emotional fatigue was especially prevalent when the group as a whole became overwhelmed by receiving and providing mutual aid to other members—both in person and online, and some indicated that they felt as though future needs for mutual aid may become too great to sustain present capacity for communal care.

These tensions between individual “survival strategies” and communal needs came to a head during a disruption caused by a person who had once caused a similar disturbance several months prior to this incident. Some regular attendees recognized her heightened mental state as she became argumentative throughout the course of the meeting and interrupted group proceedings. One facilitator stood up in the circle and tried to prevent the conflict from further escalating, while the other facilitator began chanting to calm himself in what almost sounded like an attempt to ward her away. As the attendee in mental distress made a rowdy exit, I walked with her outside as she threatened to sue the community center and to call the director of the community center that housed the Collective’s meetings to tell her about her mistreatment.

While those in the group talked amongst themselves as they processed what had happened, the digital response I received about the incident was almost as immediate and its consequences far-reaching. As a co-facilitator of the meeting space within the community center that day, I became a point of contact for those who heard about the occurrence secondhand. After I returned to the meeting, I received a call from the community center director after she had received an angry, rambling voice message from the person who left our meeting. Soon after ending my call with the director, I received text messages from another regular volunteer at the center asking me what had happened; and I responded by texting him that Collective members had de-escalated the situation.

Throughout the week that followed, discussions on the Google Group about the meeting brought up talk of banning the person from the group as a way of “setting boundaries” collectively, a suggestion that was a sensitive point for others in the Collective who had experienced rejection from many social circles due to their nonconformist behavior. Below are excerpts from some of the 22 emails sent amongst members about the prospect of banning the attendee who caused the disruption.

Subject: “conflict resolution moving forward—please read and respond”

  • 1/21/2015—Claire:

    • This is not ‘my’ group and I feel like a lot of responsibility to resolve this situation is falling upon me, when I was not even present for the incident… I do not know the process by which people could decide whether or not to unwelcome the person, and what the conditions of their participation may be. I am not in favor of lifetime bans, no return option, etc., as that seems really extreme unless in cases of physical violence, harassment, sexual threat, overt hate, etc.

  • 1/21/2015—Ruth:

    • I’m concerned about an outright ban, unless it is demonstrated as a continuing pattern.

    • It would leave me wondering about if I would be banned, for example, if I was dissociated and not able to respond, causing people to feel helpless.

    • Interested in having an in-person conversation about this, rather than an awkward email.

  • 1/22/2015—Jim:

    • I wasn’t the only one traumatized by this person’s actions, and frankly I am tired of talking about her and it. I’m sure there is a process to hold a vote or make decisions since no one person is supposed to be the leader. I think we need to utilize that process to let the group decide if this person should be banned or not and put the issue to rest.

  • 1/23/2015—Claire:

    • I am concerned about the expectation that the group will be invariably safe. There are factors we can’t (and shouldn’t try to) control for. I understand that part of safety is accountability and that the group needs to hold people accountable when they undermine the statement of intent.

    • I also understand that my life circumstances are currently such that it is not appropriate or functional for me to be inhabiting a leadership/facilitative role within the Collective.

The emotionally-charged incident at the Collective meeting and the thorny conversations that followed it served as an ethnographic moment—one that crystallized the limits of personal capacity navigating and constructing boundaries between individual and communal support. Regarding the person who disrupted group proceedings, concern surrounding a potential ban—an ultimate boundary for the group—brought up fears that regular attendees who made similar gaffes while in states of mental distress could be banned as well. Given the social ostracization that many in the group had felt from other social circles, this action seemed more hurtful and threatening to group dynamics than the actual disruption had been. In these excerpts, Claire—who served as the main organizer for the Collective—attempted to pivot responsibilities to others to facilitate a discussion about what should be done to other attendees. Again, on a later email, Claire articulated her need to set a personal boundary to remove herself from a leadership role by reiterating that her life circumstances make it difficult for her to take on this responsibility. Ultimately, however, other members relied on her to moderate a meeting in-person (sparked by Ruth’s statement about her aversion to “awkward” email discussion threads). And when the in-person meeting occurred about decision-making strategies and ways to cultivate shared consensus, Collective members looked to Claire for guidance on how to proceed.

While she remained adamant that she should not always represent the group, Claire struggled with feelings of incredible responsibility for the group’s well-being. Moreover, her aspiration to practice the democratic values of mutual aid and reach consensus for shared decision-making (a core tenant within many radical mental health movements) were often at odds with the articulation of concrete tasks needed to shift responsibilities and leadership to others in the group. Such tension created another layer of anxiety in the group that the membership may wane if she stopped supporting them to the extent that she had been. She attempted to moderate anxieties about future challenges within group dynamics through acknowledging uncertainties within her past and present ability to organize or moderate collective spaces. This double bind within the digital exchange created unease amongst some contributors to the group who were sympathetic with her plight and relied upon others for support in the past, yet were unable or unwilling themselves to take on further leadership responsibilities in moderating discussions online or in person, planning events, or sending out group announcements online. Personal capacity to facilitate organizational structure and process varied widely for Collective members, and these shifts continually transformed the mutual aid assemblage and its communal capacity to provide mental health support and a sense of security within the group.

Despite the Collective’s efforts to account for individual needs while mitigating issues surrounding communal support, Jim decided to end his engagement with the group due to this incident. His concern that he might act impulsively towards another Collective attendee in distress, ambiguities surrounding facilitation and moderation of group interactions, and his discomfort with the lack of clear expectations provided within group decision-making processes led him to withdraw. He did not believe that the Collective could maintain a safe environment for him to feel comfortable being around others in the future. This incident, among others, exposed some of the dilemmas associated with mutual aid practices, when individual and communal boundary formation became morally uncertain and when decision-making obtuse. In the end, withdrawing from the group was the only strategy that Jim could implement to ensure his personal safety—even though that meant he would sacrifice his social well-being to do so.

Within this context, the Collective’s ability to perform mutual aid had definite limits. Their uncomfortable impasse not to ban attendees experiencing extreme mental states was intended to reinforce a mutual aid value of accepting psychic diversity and remaining open to individuals’ dynamism and growth, yet ultimately resulted in a regular attendee’s disengagement from the group. The emotional resources of individuals, their varied levels of ability to communicate effectively online, the realities of differing needs within the group, and the structures of social engagement—all created barriers or blockages to open engagement and mutual aid online and in person. Consequently, those who participate in the group had to balance their emotional and mental capacities within a plethora of other complex motivations and limitations to involvement, in order to determine for themselves how they might fit into Collective’s dynamics.

Discussion

Collective members strategically used boundary formation language in several ways. The idiom served as a linguistic device of “proving” one’s intense sensitivities to social dynamics, and thus the need for discontinuing involvement in a particular situation. In Steven’s case, he viewed crafting a self-narrative within mutual aid assemblages as a form of self-care and a way to practice wellness strategies, even though such commitment may come at the cost of attending to the Collective’s needs. Likewise, Val perceived both positive and negative feedback from others online and in-person as a way to articulate her experiences more fully, to limit her involvement within difficult or ambiguous situations, and to form a sense of well-being through the practice of setting boundaries with others. In asserting social avoidance or positive withdrawal as a strategy of self-care, both Steven and Val used “boundary formation” language as a protective mechanism that aided in their well-being and highlighted their dedication to recovery.

Ellen Corin (1992) in her study of former psychiatric patients diagnosed with schizophrenia who successfully practiced strategies to avoid rehospitalization, found that her informants often chose not to engage in traditional forms of psychiatric rehabilitation, including attendance within support groups, counseling, or supportive jobs programs. Countering established perspectives in psychosocial rehabilitation, she described ways in which participants developed strategies for limited social interaction by developing routines that would place them in social spaces, without the demands of direct engagement with others and without support from institutions that worked with clients diagnosed with schizophrenia. She termed such social engagement at a distance as a form of “positive withdrawal”—a stance that she argued should not be pathologized by health professionals. Similarly, many Collective attendees like Steven and Val perceived a benefit from time spent away from the group; and attendees’ strategies to place themselves within or on the periphery of social circles—online or through weekly meetings—enabled them to manufacture levels of engagement that suited individual needs, with respect to social intensities created within the mutual aid community.

However, not all forms of boundary formation or social withdrawal can be seen in such a favorable light. Given the diversity of needs for social support within the Collective, members struggled to make the space accessible to attendees, without impinging upon each other’s sense of comfort and security. For Collective members like Beth and Jim, they felt as though attempts to engage within mutual aid communities resulted in a sense of self-doubt about their abilities to engage with fellow Collective members, ambiguity about their role and position within the group, concerns about other members overstepping their “bounds,” and a lack of security within the group’s longevity and ability to resolve issues as a group. For Beth, who struggled with feelings of shame and embarrassment from her interactions while in a heightened state of energy, social withdrawal from group dynamics felt less like a self-determined stance and one that she imposed upon herself in order to prevent further erosion of social ties. Explaining why he felt as though he should leave the Collective, Jim discussed his need to have clearly-defined roles and rules established collectively, so that he could have a sense of security in knowing the protocol that would be followed should another difficult incident occur with someone experiencing intense mental distress. He worried that he would react in an unhelpful manner should a similar incident occur in the future, and felt as though leaving would be the only way to ensure he would not do something that he would regret to another Collective attendee.

This struggle to balance communal needs within individual needs was made more difficult by the Collective’s unwillingness to commit to a certain protocol that could diminish the openness or flexibility of the group. Moreover, they recognized their own unpredictable mental states and sought to facilitate a space in which diversity of mental states would be welcomed. Here, the concept of tentativeness may be useful to understand the form of hospitality the Collective sought to create. Anthropologist Talia Weiner (2011) defines tentativeness within support group dynamics as “the literal practice of avoiding commitment to future plans that would require a reliable, continuous self, and to a cultivated stance of uncertainty and suspicion toward one’s own thoughts and emotions at any given moment (472).” She goes on to describe this stance as “a distinct disposition in relation to risk—one that required an acknowledgement of the management of future uncertainty by an uncertain present self.” Weiner limited her discussion of this phenomenon to her observations within a Depression/Bipolar Support Alliance group, that readily embraced pathologizing language to describe their experiences with mental distress; however, I found that within the Collective, a group that is more critical of such bio-psychiatric framing, also indicated that the ways in which their mental distress takes shape make it difficult to cultivate the communication and collaboration needed to better support group members and the everyday functioning of the mutual aid organization as a whole. In Jim’s case, the need for strict management of group dynamics, as opposed to an acceptance of precarity, resulted in his disengagement from the Collective; while others felt more secure knowing that awkward encounters with each other could be resolved without strict forms of social censure.

Another justification for the use of boundary formation was the belief that communal relations would deteriorate further if Collective members who were feeling “burned out” or a sense of compassion fatigue attempted to provide support for a person in distress when they themselves were not feeling well enough to do so. For example, Claire’s ambivalence with facilitating conflict resolution also revealed larger challenges with maintaining a group when individual leaders often felt too great of a personal responsibility for the Collective’s longevity. Likewise, many Collective attendees also believed that the community would deteriorate if people did not feel as though they were receiving sufficient mutual aid from others, as seen in Jim’s departure from the group. Most often, silence became a way of coping with anxieties associated with digital mutual aid. Whether the silence came from a self-protective strategy, an altruistic concern not to burden others with providing mutual aid, or a combination of the outcomes, it often resulted in Collective members feeling as though their needs have not been met. Thus, expectations about the extent to which mutual aid can be a form of solidarity were often tempered over time, as they gained a sense of limited collective capacity to sustain organizing efforts on personal and communal levels of engagement.

As a rhetorical device, employing the phrase of boundary formation often shifted conversations towards less sensitive topics, from discussions about individual situations to more general declarations (Wilkinson and Kitzinger 2000). It served as a blockage to redirect mutual aid conversations and move along the flow of a conversation. For example, within the email exchange above, Claire established a personal limit for her ability to facilitate conflict resolution. Her utilization of boundary formation rhetoric served to end a broader discussion about the Collective’s capacity to address difficult situations and begin a more limited conversation regarding her personal standing within the group dynamics. What is more, Collective members perceived the vagueness of boundary formation here as difficult to counter, for doing so would go against mutual aid values for respecting personal boundaries, maintaining non-hierarchical relationships, and accepting multiple ontologies of mental distress. In this instance, communal possibilities for well-being were threatened—and paradoxically upheld—through the use of boundary formation.

Given these considerations, many Collective members found themselves in confusing liminal spaces within their entanglements in mutual aid assemblages. Attempts to create boundaries in encounters amongst fellow Collective members revealed the paradoxical potential of digital and analog spaces to bring people together within social intensities or to propel them to dissipate or withdraw from each other. As attendees enact processes for “becoming well,” small moves to engage in or passively redirect emotional labor and the communication structures facilitating or inhibiting sociality can be seen as a continually iterative process—both personally and communally. Such pivots reveal the very real consequences of social engagement, shared decision-making, or lack thereof. They reveal limits to what communities of care can provide for members, given the great need for emotional support and incredible variance in how this support can be achieved. As a whole—these beliefs, practices, and the human and nonhuman structures involved in social engagement generate connective intensities, energetic flows, stoppages, and redirection of emotional labor.

Implications

For activists involved in mental health mutual aid support, personal and collective capacity for social engagement can reveal the limits of folk politics in fostering systemic change through the direct practice of mutual aid principles. While the emotional labor of supporting those in mental distress and the creation of boundaries within such engagement can be incredibly meaningful at an individual or collective level, mutual aid can also be such an exhausting and ambiguous process that deters activists from challenging the social, economic, and political factors which continue to marginalize and stigmatize those diagnosed with mental illness. Understanding the multiple uses of boundary formation within mutual aid assemblages can help activists articulate their discomfort with social engagements, foster productive discussions about best practices concerning the provision and reception of social support, and educate other social spaces about ways to facilitate inclusive, accessible spaces for those with lived experience of mental distress. Moreover, the framework of mutual aid assemblages may help alleviate an activist’s sense of intense individual responsibility towards another’s well-being (at the cost of their own well-being), given that all bodies are caught up within larger forces and flows that shape mental health and well-being.

Qualitative analysis of language practices amongst radical mental health groups may give clinicians new insight into the transient, dynamic communities involved in mutual aid. In clinical settings, health care providers may consider inquiring about the cultural dimensions of a person’s understanding of wellness and beginning open-ended discussions about their social life, including their sociality online. Psychiatrists may reframe “non-compliance” to psychotropic prescriptions as a patient’s assertion of personal agency over their wellness practices. They may become more open to frank discussions about lowering dosage of a psychotropic medication, or starting a new prescription regimen, with the understanding that clients may be soliciting non-professional feedback for tapering off of medication through discussions in support groups and online forums as well.Footnote 4 What is more, a deep understanding of mutual aid values toward personal choice, communal empowerment, and intentional resistance to stigmatizing rhetoric around “mental illness” may aid clinicians in establishing trust and open communication among clients who have felt harmed by health professions.

Limitations

The small sample size of the Collective makes it difficult to make larger claims about the utilization of boundary formation as a linguistic signifier of a blockage, funnel, or channel within mutual aid assemblages; and more research is needed on individual and communal decision-making regarding capacity to provide and receive support (Roberts et al. 1999) and the use of boundary formation as a strategy of personal and communal well-being. In a literature review of mutual help groups for mental health, Pistrang et al. (2008:121) indicated a gap in scholarship regarding data about the characteristics of those who benefit and those who do not benefit from such groups and what variables in social engagement ought to be considered in studying individual and group attributes. In addition, further research about mutual aid groups’ capacities to sustain membership, moderate, and facilitate meetings is needed.

Given the diversity of radical mental health groups and the contexts through which they emerge, mutual aid groups that form in response to perceived hyper-psychiatrization of certain populations vary significantly from those that form due to a scarcity of any mental health resources. The former may seek to disrupt or dismantle the psychiatric and psychological disciplines (Burstow 2013). In contrast, the latter may seek to organize community groups as a strategy for survival as they make a case for clinical and therapeutic services (Weiner 2015). For this reason, more anthropological research on the ways in which culture, time, place, and politics affect local understandings of mental suffering and well-being is needed to explore local linguistic differences and record multiple epistemic and ontological trajectories within recovery-oriented movements (Kleinman 1987). Such research could indicate the limits of group management within mutual aid assemblages that, by their very nature, seek to question rationality, agency, and stability as markers of good mental health (Weiner 2011).

Conclusion

People are a mess. Complex and raw and wounded and terrified and swooning sick to even speak. Needs often conflict, and pain knows no boundaries. To hold space for people to speak and be heard and be present with one another as mutual human beings in a fucked up and beautiful world is hard. It takes intention and attention and an enormous amount of sensitivity to what is happening in the room and in people’s lives… The concept of holding an open community space for radical mental health support and discussion is a beautiful concept. The operationalizing of that concept—that there should be places where people can talk about their experiences with mental health, identity, healing, their struggles, and fucking triumph in staying alive—is challenging and problematic in so many ways.

—Claire, unsent e-mail to the Collective’s Google Group, May 18, 2015.

As articulated in this quote above, mutual aid comes with incredible challenges: entanglements within radical mental health communities can inadvertently foster an element of self-surveillance, danger, and censure amongst oneself and others. Nevertheless, mutual aid assemblages and practices associated with them can also foster personal and collective well-being through social engagement and create in-person and digital milieus that promote a sense of well-being. When the pain of mental distress “knows no boundaries,” as mentioned in the quote above, individual attempts in boundary formation often conflict with communal well-being and longevity. In the scarce economy of emotional reserves and mental capacity to facilitate mutual aid, decisions about how time and energy is spent can impact communal functioning as a whole, as mental health activists continually renegotiate their roles and standing in local groups and within larger social movements. Conceptualizing boundary formation as blockages and flows of emotional reserves within mutual aid assemblages can serve as a useful metaphor to articulate personal wellness practices and collective projects within communities of care.