Stigma, agency and recovery amongst people with severe mental illness

Social Science & Medicine 107 (2014) 1e8

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Stigma, agency and recovery amongst people with severe mental illness Rob Whitley a, b, *, Rosalyn Denise Campbell b, c a

Department of Psychiatry, Douglas Mental Health University Institute, McGill University, 6875 La Salle Blvd, Montreal, Quebec, Canada H2X 2K8 Dartmouth Psychiatric Research Center, 85 Mechanic Street, Lebanon, NH 03766, USA c School of Social Work, University of Georgia, Tucker Hall 201, Athens, GA 30602, USA b

a r t i c l e i n f o

a b s t r a c t

Article history: Received 21 July 2013 Received in revised form 8 February 2014 Accepted 11 February 2014 Available online 12 February 2014

Evidence suggests that people with a severe mental illness still suffer high levels of stigma and discrimination. However little is known about how people with a severe mental illness manage such stigma. As such, the overall aim of this study is to document and analyze behavioral and psychological strategies of stigma management and control in a sample of people in recovery from a severe mental illness. To meet this aim, we conducted a five-year (2008e2012) qualitative longitudinal study in Washington D.C. Participants were recruited from small-scale congregate housing units (‘recovery communities’) for people in recovery, provided by a public mental health agency. We conducted regular focus groups at these communities, augmented by in-depth participant observation. Analysis was propelled by the grounded theory approach. A key finding of this study is that stigma and discrimination were not perceived as commonly experienced problems by participants. Instead, stigma and discrimination were perceived as omnipresent potential problems to which participants remained eternally vigilant, taking various preventive measures. Most notable among these measures was a concerted and self-conscious effort to behave and look ‘normal’; through dress, appearance, conduct and demeanor. In this endeavor, participants possessed and deployed a considered degree of agency to prevent, avoid or preempt stigma and discrimination. These efforts appeared to have a strong semiotic dimension, as participants reported their developing ‘normality’ (and increased agentic power) was tangible proof of their ongoing recovery. Participants also routinely discussed severe mental illness in normative terms, noting its similarity to physical illnesses such as diabetes, or to generic mental health problems experienced by all. These behavioral and psychological strategies of normalization appeared to be consolidated within the recovery communities, which provided physical shelter and highly-valued peer support. This fostered participants’ ability to face and embrace the outside world with confidence, pride and dignity. Ó 2014 Elsevier Ltd. All rights reserved.

Keywords: United States Recovery Stigma Agency Ethnic density Qualitative Peer support Mental illness

1. Introduction The word ‘stigma’ originated as a noun in ancient Greek, which literally meant a ‘brand’ or ‘mark’. Historians have noted that in ancient Greece, slaves were often branded with the letter S, which marked them out in perpetuity from the rest of society (Simon, 1992). The concept of stigma has since entered the social sciences, mainly through the seminal work of scholars such as

* Corresponding author. Department of Psychiatry, Douglas Mental Health University Institute, McGill University, 6875 La Salle Blvd, Montreal, Quebec, Canada H2X 2K8. E-mail addresses: [email protected] (R. Whitley), [email protected] (R. Denise Campbell). http://dx.doi.org/10.1016/j.socscimed.2014.02.010 0277-9536/Ó 2014 Elsevier Ltd. All rights reserved.

Goffman (1963) and Foucault (1995). Goffman (1963, p3) defined stigma as ‘an attribute that is deeply discrediting.turning a whole and usual person to a tainted and discounted one’. He further noted that stigma can be divided into that which is discredited- this being an obvious mark easily perceived by an observer, or discreditablethis being a secret stigma not readily apparent to an observer. Goffman states that, once noted by an observer, stigma can mark out the bearer for undue scrutiny, criticism, ridicule, mockery and discrimination. In a similar vein, Foucault (1995) argues that the stigmatized are often the focus of precautionary surveillance from both state authorities and the general public. This ‘disciplinary gaze’ can be internalized by the bearer of the stigma, leading to selfdoubt, shame and guilt (Schulze and Angermeyer, 2003). Stigma is a secondary correlate of many illnesses, including leprosy, HIV/AIDS and mental illness. Indeed a massive body of

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research indicates that people with a mental illness suffer high levels of stigmatization, which often leads to discrimination and marginalization (Thornicroft et al., 2010; Corrigan et al.,, 2004). This is especially the case for people with a Severe Mental Illness (SMI) such as schizophrenia. For example, people with SMI frequently have difficulty obtaining gainful employment or finding suitable accommodation (Stuart, 2008; Corrigan et al., 2006). Many attempt to conceal their SMI from colleagues, friends or even family, for fear of being shunned and stigmatized (Link et al., 1999; Thornicroft, 2007). These forms of discrimination and ongoing marginalization are sometimes known as enacted or external stigma. This stigma is often internalized with negative consequences for subjective well-being. This is sometimes known as felt or internal stigma (Scambler and Hopkins, 1986). Research has shown that some factors can counteract the negative impact of stigma and promote recovery. At the societal level, anti-discrimination legislation, as well as targeted antistigma campaigns can reduce levels of enacted stigma (Stuart, 2006; Pinfold et al., 2005). At the treatment level, some research suggests that mental health services that focus on recovery, empowerment and peer support can reduce levels of felt stigma (e.g. Corrigan, 2002; Jensen and Wadkins, 2007; Verhaeghe et al., 2008). That said, research has shown the persistence of negative attitudes towards people with SMI among the general public (Read et al., 2006; Phelan, 2005). Numerous studies suggest that levels of stigma have not diminished over time (e.g. Pescosolido et al., 2010; Phelan et al., 2000; Angermeyer and Matschinger, 2005). Indeed, in a systematic review of this literature assessing studies from 1950 to 2011, Schomerus et al. (2012) worryingly conclude that “no changes, or even changes to the worse, were observed regarding attitudes towards people with mental illness” (p440). Qualitative research is well suited to exploring the subjective impact of stigma, being able to access the lived day-to-day experience of individuals. Only a few notable qualitative studies have shed light on the impact of stigma. Dinos et al. (2004) conducted narrative interviews with people with mental illness, finding that stigma was a pervasive concern, manifesting itself regularly in patronizing attitudes as well as overt discrimination. Similarly, Schulze and Angermeyer (2003) conducted focus groups with people with schizophrenia, finding that stigma was frequently felt to be present in interpersonal interactions. Participants also believed that stigma limited their access to valued social roles, leading to further discrimination. These studies have successfully described the nature and extent of stigma from a subjective perspective. While useful, this description begs further questions. What do people with SMI (as active agents) do in reaction to stigma? In other words, what strategies and orientations do people with SMI engage in to manage, lessen, avoid or confront stigma? Is stigma associated with SMI an indelible badge of shame e what Goffman calls discredited stigma? Or is it something that can be actively concealed or obscured, what Goffman calls discreditable stigma? In order to explore the above questions, we conducted a longitudinal qualitative study of people diagnosed with SMI to explore their psychological and behavioral reactions to stigma. As such, the overall aim of this study is to document and analyze strategies of management and control of stigma in a sample of people in recovery from SMI. 2. Methods This paper reports findings from a larger study entitled ‘Creating Communities’. This study evolved from a desire to understand the role that ‘recovery communities’ could play in the recovery of

individuals with SMI. Recovery communities in this sense refer to small scale congregate housing units of between 6 and 18 apartments inhabited by people in recovery from SMI, who have also made an active commitment to abstinence from substance use. Residents are given their own self-contained apartment with no live-in professional support; the idea being that peer support provided in the communities will assist in recovery. Residents are also offered participation (by choice) in three psychosocial evidence e based practices (i) supported employment (Becker and Drake, 2003); (ii) Illness Management and Recovery (Mueser et al., 2002) and (iii) Integrated Dual Diagnosis Treatment (Drake et al., 1998). They also receive intense case management services and careful medication management from a psychiatrist. All the above services are provided by a single community mental health agency. The recovery communities are concentrated in the overwhelmingly African American NE and SE quadrants of Washington DC. Recovery communities are a relatively new intervention, expanding in the District of Columbia from three such communities in 2005 to twelve in 2013. The current research was funded in part to test the feasibility and effectiveness of these communities in fostering recovery. This longitudinal study utilized the grounded theory approach to examine the experience of recovery among people living in these communities. As demanded by grounded theory, rounds of data collection were followed by interim analysis, hypothesis generation, and hypothesis testing in subsequent data collection (Glaser and Strauss, 1967). As such, focus groups were held every four months over a five year period (2008e2012) to elicit perspectives on recovery. The study began with only three recovery communities, but had expanded to eight by its termination. Focus groups were augmented by in-depth participant observation at the three original communities by the first author. 2.1. Participants All participants in this study had a diagnosis of SMI: either schizophrenia, bi-polar disorder, major depression or schizoaffective disorder. The vast majority had this diagnosis for over 5 years, with many having spent time hospitalized for their illness. All the participants were recovery community residents, largely women (75%) and African-American (83%). The average age of the residents was 47 years old. All the residents had experienced periods of homelessness (this being a criterion of entry into the recovery community) and over 80% also had a diagnosis of substance use disorder. Many of the participants had a history of sexual abuse and victimization, and most lived on a low income. 2.2. Procedures The present study began in 2008, however the first author had conducted other research at the recovery communities from 2005 to 2008. As such, he had established a personal and trusting relationship with many of the residents which facilitated recruitment and the building of rapport. At the commencement of this study (2008), all residents were informed of the study design, including the regular focus groups, led by the first author. Case managers who worked at the communities would announce the upcoming focus group in good time. Most residents participated repeatedly in multiple groups over time. As such, the results tend to represent the perspectives of people with long-term tenure in the recovery community. All groups were held in residents’ homes or common areas within the recovery community building. Focus groups typically included about six to twelve residents, although exact numbers were difficult to ascertain as many participants came and

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went during the group. All participants gave informed consent and the protocol was reviewed and approved by Dartmouth College IRB. The focus groups were conducted by the study authors or welltrained research assistants. The groups followed the funnel structure where facilitators began with general questions about recovery and then moved to more specific questions. For example, the first question was usually ‘how have things been going for you all since our last visit?’ Further questions would then be posed inquiring into potential barriers and facilitators to recovery. We did not ask specific questions about stigma per se; rather we took an angular approach, asking questions such as ‘how do the clinical staff treat you?’, ‘tell me about your experiences in the workplace?’ and ‘how do you feel about the neighbors around here?’ Responses were followed by specific probing questions requesting examples of any general assertions made. This allowed the researchers to elicit everyday occurrences and subjective experiences that could be related to stigma. Focus groups ranged from 60 to 90 min and were audio-recorded with participants’ permission. The recordings were then transcribed verbatim. Participants received $20 for each focus group they attended. In total, seventy-two focus groups occurred between 2008 and 2012. To strengthen the dataset, the first author conducted long term participant observation at the three original recovery communities. This included staying in vacant apartments in the recovery communities for up to two weeks at a time, where he would mingle and interact with participants on a day-to-day basis. It also included taking individual consumers out for lunch in local restaurants, as well as going on extended walks around the neighborhoods with them. During these interactions, the first author would observe interactions and discuss issues arising from the focus groups. In line with grounded theory, he would also discuss tentative conclusions regarding the study, using responses to member check emerging results. 2.3. Analysis Analysis was driven by the grounded theory approach outlined in the various writings of Barney Glaser and Anselm Strauss (Glaser and Strauss, 1967; Glaser, 1978, 1992). This primarily inductive method requires that analysts develop prominent themes and categories from the early stages of data-collection that is grounded in the lived, day-to-day experience of participants. Provisional themes are then tested as working hypotheses during new rounds of data collection for further verification or rejection. These procedures were followed throughout the five years of the project. The facilitator noted observations and reflections after each focus group, with common themes being marked and discussed. Interviews were then transcribed into a word processing package and uploaded into Atlas-ti software (Muhr, 1997) where authors read the transcripts. This process gave authors in-depth immersion in the data. During the coding process we again took an angular approach. We identified all the paragraphs of text that referred in the broadest sense to the causes, manifestation, and consequences of stigma, as well as its opposite- defined by Corrigan et al. (2004) as community integration. The second author was the primary coder, who was well-acquainted with the concept of stigma given her doctoral studies were on that topic. She was instructed to select text related to rejection, ridicule, derision, discrimination and other similar concepts, either subtle or overt, even if the actual word ‘stigma’ was not mentioned in the relevant extract. Similarly she was instructed to select text that refers to the opposite of the above concepts, for example those that reveal community integration, empowerment, acceptance and self-esteem. We paid particular attention to the responses and reactions to perceived stigma. We then engaged in

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constant comparative analysis, deliberately searching for similarities and differentials across focus group transcripts and participant observation field notes in order to test emerging finding vis-à-vis stigma (Glaser and Strauss, 1967). These were discussed between the authors on an ongoing basis. This form of multiple coding is recommended to strengthen validity (Pope and Mays, 2000). The overall synthesis of this process is presented below in the results. 3. Results Surprisingly, stigma was not perceived as a commonly experienced problem by participants in this study. Being on the receiving end of actual stigma was rarely talked about by participants. Few stigmatizing encounters were reported, and it was not described as a significant barrier to recovery. That said, participants were consciously aware of the destructive power of stigma, and were acutely fearful of being stigmatized by others. As such, stigma was perceived as an omnipresent potential problem to which participants remained eternally vigilant. This fear of stigma led participants to engage in various behavioral and psychological strategies to prevent the actual experience of stigma. At the behavioral level, they made strenuous effort to ‘blend in’ to prevent enacted stigma, consistently talking about the effort they put into trying to ‘look neat’, ‘bathe.clean.look normal’ or put simply ‘take pride in ourselves’. At the psychological level, it appeared that participants engaged in a discourse that ‘normalizes’ or ‘universalizes’ mental illness in an effort to reduce felt stigma. For example, participants frequently stated that mental illness is a common affliction akin to physical illness, or that it is simply the sharp end of a spectrum of wider mental health problems faced by all members of society. Participants stated passionately that, despite their mental health status, they were still a ‘normal person’ or a ‘productive member of society’. These behavioral and psychological strategies were used to manage and prevent stigma. It appeared that these strategies were consolidated within the recovery communities through mutual reinforcement among the residents. In order to flesh out these processes, we have divided the results into four sections below, namely: (i) sources of stigma; (ii) behavioral strategies to prevent stigma; (iii) psychological strategies to prevent stigma; and (iv) peer support as a mediator of stigma. 3.1. Sources of stigma As stated, the actual experience of stigma did not emerge as an overwhelming issue. When stigma was discussed, it was often understated or abstract, though with an indication that participants are ever-conscious of its potential manifestation and impact. Residents reported that they rarely felt stigmatized by people in their neighborhood. Most stated that neighborhood residents were friendly or simply went about their own business, leaving participants to do the same. This was corroborated at various points of the research by participant observation. For example the first author would regularly walk about the neighborhood with some recovery community residents. During these walkabouts, participants and neighbors frequently greeted each other, and residents entered with confidence various facilities including shops, a community center, hairdressers and cafés to show the first author local amenities. However, a few participants occasionally felt that living in recovery housing attracts concern from the neighbors e though this is stated at a general level. When pressed by the researchers for examples in later rounds of data collection, participants continued to talk abstractly, one saying:

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We have the stigma because some of us are in recovery and we are affiliated with a mental health agency, so nobody wants that in their neighborhood, regardless. A few residents occasionally stated that the attitudes and behaviors of some clinical staff could put participants in the spotlight. In one focus group, a participant stated that some staff are ‘treating us like children’, while another interjected that they were sometimes treated like they were ‘stupid.’ A fellow participant responded, saying ‘see, that’s what they do, and that’s why the neighbors treat us the way that they do!’ though again no specifics are given. In this interaction, one of the main concerns is that paternalistic staff actions around the recovery housing can bring attention to the residents’ SMI, which could lead to stigma from neighbors. Some residents felt that the behavior of other residents often brought negative attention from neighbors. When one resident in a recovery community discussed how another resident’s illness was “deteriorating”, another described the behavior as “embarrassing in the neighborhood”. Another resident commented on the impact of one community member on the other residents. We had a lot of problems here recently, to where as we got a problem within our unit, it’s gonna draw the attention of everybody. And here, recently, we had a client who had a problem of going in, staying clean, and staying sober. So actually, if he messes up, it brings the stigma to everybody.it’s gonna draw attention to us! It is interesting to note that participants did not readily report during the focus groups that their neighbors were stigmatizing. Instead, they were more concerned with the actions of fellow residents and staff, which had the potential to put the recovery housing in the neighborhood spotlight e possibly leading to more stigma. This was corroborated during the participant observation. For example, the majority of residents expressed a mix of horror and disdain during the research when a few residents e described as ‘bad apples’ e seriously relapsed into substance abuse or got in ‘with the wrong crowd’ on the surrounding streets. These ‘bad apples’ were almost unanimously shamed and marginalized by the other residents, due to worries that they may expose the whole community to stigmatization. These dynamics had numerous consequences. For example the first author witnessed a verbal flare-up between a group of residents and an individual suspected of hosting drug dealers in their apartment, which almost led to a physical fight. Furthermore, residents occasionally banded together to ensure that ‘bad apples’ were evicted from the community. As such, the recovery community acted collectivity to help remove individuals who might bring a stigmatizing gaze upon the building and its residents.

3.2. Behavioral strategies As previously stated, some participants stated that the ‘messed-up’ behavior of other recovery community residents could attract negative attention from neighbors and others. Conscious of this phenomenon, participants regularly noted how important it was to ‘act normal’ to prevent the development and accrual of stigma within the neighborhood. One participant noted that:

Our neighbors are good. They’re home-owners. They’ve been in this area for a long period of time. They’re very observant to our comings and goings, sometimes a little bit too much, but as long as we doing what we’re supposed to do, that shouldn’t bother us. They’re good people. Another participant stated, to the approval of other focus group members, that the neighbors would remain on good terms as long as recovery community residents “behave”. Indeed the importance of ‘behaving’ appeared early in the study, and was verified as a prominent theme during later rounds of data collection. It encompassed factors such as acting ‘ordinary’ and presenting oneself as ‘normal’. This is indicated in various assertions made in the focus group. For example one participant proudly stated that ‘we dress like people! We look neat!’ In a similar vein, another stated with pride that ‘the truth of the matter is, we don’t carry ourselves the way handicapped people do’, eliciting the response from another participant that these efforts meant ‘you can’t tell’ that residents have a mental illness. Another participant stated triumphantly that ‘I don’t think the neighbors even notice e I don’t think they even notice us’. These examples suggest that participants possess an awareness and consciousness of the potential of stigma to harm them. Thus they take action to “avoid the gaze” that includes dressing neat and carrying themselves in a certain manner. This effort to “fit in” not only protects against stigma; it also reflects a sense of pride and achievement that could be indicative of their ongoing recovery, as instantiated in the extract below. I don’t know if it’s the support or we just take care of ourselves, but it all blends in. I don’t think people go around judging you unless you out to harm somebody, you know.as long as you within the norm then you fit in.We have problems, but like I said, we take pride in ourselves. We care about ourselves. Again the extract above shows how participants make efforts to ‘fit in’, ‘blend in’ or be ‘within the norm’. This process, reliant on the exertion of individual agency, is valorized throughout the study by participants, with much emphasis placed on taking ‘care’ or having manifest ‘pride’ in themselves. This pride and care could also be interpreted as having a strong semiotic dimension inasmuch as it is considered tangible proof of recovery. This phenomenon repeated itself consistently during participant observation, for example when an African-American woman participant in her forties stated with pride to the first author that ‘no-one here would guess we have mental illness’ while lunching in a trendy restaurant in her neighborhood. These processes are further encapsulated in the extract below, where the participant joyfully recites activities that are indicative of recovery: Some people don’t know that someone has a mental illness, that we have a mental illness or something like that unless we say something. They can’t just tell by looking at us! You know, we bathe, we clean, we look normal! And there are other people in the neighborhood that have mental illness but we do better than them. The combined data presented in this section suggest that many participants are aware that the general public often associates SMI with bizarre behaviors, being dirty, untidiness and a lack of pride. These are all considered factors that would single people out in the neighborhood, resulting in a strong stigmatizing gaze. As such, much effort is made to prevent such a gaze

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from materializing. These efforts could simultaneously be considered a semiotic display of recovery.

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of stigma, and take active psychological steps to avoid internalizing such stigma. As explored in the next section, most are aided and abetted in this process by peer support within the recovery community itself.

3.3. Psychological strategies Participants exert agency to “look normal” in order to avoid external (or enacted) stigma associated with mental illness during their interactions with the outside world. However the mere fact that so much effort is put into ‘looking normal’ suggests that felt stigma (or at least its residues) remains an issue for participants. Indeed, participants in this study appeared acutely aware of the dangers that felt stigma could pose to self-esteem and selfacceptance. As such, they frequently reasoned among themselves about the ontological nature and impact of SMI. In doing so, they often presented mental illness in a normative framework, thus diminishing its difference from physical illness or generic ‘mental health problems’. This can be seen in the extract below, where the participant casually compares mental illness with other illnesses. You know just because we had a mental illness, that doesn’t stop us from being a normal person. I think there are a lot of people in the world that have different types of illness. They have diabetes, and high blood pressure. You know. Those are illnesses, and they take meds for those. So, I am taking meds. Like the previous extracts, a high stake is placed upon being considered a ‘normal person’ by the participant above. This normalization of mental illness was also expressed by other participants. For example the participant below states that everybody is in some form of recovery, and that recovery from mental illness is one form among many: Everybody is recovering from something and it gives you, speaking for myself e coming from a place with no self esteemit gives you a sense of belonging, and a sense of character, and it’s not going to say I am a low class citizen. I fit somewhere up in the mainstream. You know, now I am a productive member of society. You know, I do have a choice.I don’t feel I am a waste or just a statistic. Put it that way, I am not a statistic. Again, this participant valorizes the importance of fitting in, as well as the developing sense of self that accompanies the recovery process. Other residents credit the ability to be more than “a statistic” to living within the recovery community itself, as can be seen in the quote below. In this sense the recovery community could be considered as a protective cocoon or psychic shelter where residents can receive psychological and existential sustenance from fellow residents. The stigmas are not here in our community. We look at one another as if we are human beings, which we are. And we don’t say, ‘here come bipolar, here come schizophrenic, here come this one, here come that one’. But we don’t look at each other like that. That is what I love about it! I think that is why it is so beneficial to us to know we can treat each other like human beings. When you go out in the world, they may ask stigmas to you, but still you can come home. You know, you don’t have to worry about that stigma sticking on you. You can be yourself. It is very important for a mentally ill patient to be their self. The extracts given in this section of the results all combine to indicate that much psychological effort is put into avoiding stigmain this case felt (or self) stigma. Participants’ comments indicate they have ruminated on the nature and potentially damaging effect

3.4. Peer support The apartments in which participants lived offered physical shelter which was an important aspect in their recovery. But as stated in the previous section, they also acted as psychic shelters, where participants can receive strength and support from others. In the recovery communities, mental wellness, normalcy and community integration is valorized. This consolidates and intensifies the behavioral and psychological strategies identified above through reciprocal reinforcement among the residents, which can act to preempt or prevent stigma. The understanding and support from peers is summarized below by a participant: Everybody is on the same level. Even though we have different things and we going through different things, everybody e it’s like we don’t stigmatize our own selves. Somebody may be feeling bad one day or somebody may be up one day, but we know because we all are peer support. And we know that one person is no better than another person, and it keeps us grounded. And we know that somebody is looking out. So in the event that we have a problem, in the event that, God forbid, relapse happens to come into the picture somewhere, somebody is going to identify it. Somebody is going to be able to read to let you know that something is going on with you. So the building in itself being a recovery center is very helpful. Indeed, the feeling of being insulated from stigma inside the walls of the recovery community is endemic throughout the dataset, with one participant reporting to the first author after a walk ‘it’s good to get home, we can let our guard down now’. Another participant stated that ‘there’s no discrimination [in the building]; there’s a lot of love in here’. The participant below indicates that she can talk through things in the recovery community which would be odd to outsiders: In this recovery community, I am able to talk to people who are going through the same thing, without being judged. I am able to express myself, no matter how ridiculous it may sound. I just can’t go to a person on any street, and say you know, ‘I am feeling kind of crazy today’. You know, ‘I really need to talk about some things!’ They would probably call the paddy wagon! A different participant expresses the same sentiment below, though this time refers to the temptation to engage in substance abuse, a common problem feared by many participants. This participant compares the support and understanding that is provided in the recovery community regarding substance abuse, with the stigma that would be encountered elsewhere Before I lived in a place like this, there was no support. It was a regular building with regular people. So I couldn’t go to them and say, ‘Look, I’ve got this problem- it feels like I’m about to use!’ They would look at me like I was crazy. After work, I can come to anybody in this building. If I’ve got something going on and say, ‘Look. I feel like I want to use right now. Can I talk for a few minutes until the feeling go away?’ Being surrounded by understanding individuals has granted many residents the ability to make friends and build relationships

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on the basis of shared pasts and current concerns. These gains in friendship, outside of substance use communities, are somewhat new experiences. Again, this is compared with a hostile, judgmental and unforgiving outside world: Well, recovery gave me something I never had before and that was friends. I always had enemies because of what I was doing and the area I was in and the way I treated people. But now, in this community, I have friends and people I can associate with who don’t make me feel like an outcast and don’t judge me. And that’s what I like about this community. One question arising from this section of the results is whether the sustenance provided within such psychic shelters readily transfers to the outside world. The data suggests that the recovery communities do facilitate wider community integration. This is perhaps best encapsulated in the quotation given below: It gives me a chance to reenter back to the community. It also gives me a chance to meet people. It also gives me a chance to live with people whereas I won’t be judged. It gives me a chance to prepare myself for employment, because I am going back to school. And living in this community gives me a chance to socialize with other people. And not to feel like I am being judged, because at the same time, all of us are here in this recovery community working our way back to being productive members of society. What this gives me is a chance to go inside myself mentally, and to work on accepting myself for who I am, to put my guards down, to live like normal people do. This was indeed corroborated by the participant observation, with one particularly striking example given here to close the results. One afternoon, the first author was traveling to a recovery community by metro when the train halted at a station. Looking up from his newspaper, he made eye contact with a poised and professionally-dressed African-American woman in her early thirties who strode purposely into the half-empty carriage. She smiled broadly at the first author, greeting him with a bright ‘Hey! How ya’ doing? You goin’ up Georgia Avenue there’. The first author responded warmly, though he did not immediately recognize this woman. Noticing his minor confusion, the woman said ‘I am Janina from the Recovery Community’. The author then blurted out ‘oh sorry I didn’t recognize you!’. The woman responded playfully ‘well you are paying me a compliment there [laughs].I changed a lot [smiles].I got myself a part-time job with the feds.’ Our subsequent discussion indicated that she imputed her self-defined transformation to her residency in the recovery community and the support contained therein.

4. Discussion One of the key findings of this study is that reported experiences of stigma were rarely talked about in the focus groups. Participants hardly talked about actual stigmatizing interactive encounters with third parties. In this sense, the study deviates from the results of other significant qualitative studies discussed in the introduction which have indicated a high level of stigma in interpersonal interactions among people with SMI (e.g. Schulze and Angermayer, 2003; Dinos et al., 2004). This absence of stigma could be attributed to participants’ conscious and strenuous efforts to look, act and behave ‘normal’. Such efforts appeared to be successful strategies to avoid what Foucault (1995) labeled the ‘disciplinary gaze’. Participants sensed that this gaze could be focused on them at any time, and took pre-emptive measures as a consequence.

The energetic efforts of participants could be considered as having a dividend, in that experienced stigma in the outside world was perceived to be low. That said, stigma is not absent from participants’ lifeworlds. In contrast, participants seem acutely aware of the potential of stigma to intrude into their lives, with an everpresent consciousness that there is a reservoir of potential stigma in the community that could easily be activated if appearances are not carefully managed and controlled. Participants’ orientations in this regard could be considered a shrewd and rational response, given that public attitude surveys show that stigma has either increased or remained high in recent times (Pescosolido et al., 2010; Schomerus et al., 2012). It would appear that participants are aware that SMI, especially when combined with substance abuse, is an attribute that is ‘deeply discrediting’ (Goffman, 1963). However another key finding of this study is that participants are not paralyzed by such stigma; they are by no means passive recipients in this regard. On the contrary, participants develop a considered degree of agency in order to avoid or preempt stigma. This prevents them being cast, in their own eyes at least, among Goffman’s (1963) ‘tainted and discounted’. The stigma associated with SMI is not accepted by participants as an indelible badge of shame. Rather it is considered a potentially damaging factor that can be competently managed as recovery progresses. To use Goffman’s (1963) concepts, participants make active efforts to transform stigma from the discredited (i.e. an obvious mark easily perceived) to one that is now discreditable (i.e. a secret stigma). Indeed this transformation is considered a dynamic part of recovery. Hence, the results indicate that fear of stigma, rather than actual stigma itself, could be considered a vital force that governs participants’ beliefs, behaviors and attitudes. This difference perhaps mirrors the difference between fear of crime and actual experience of crime itself, with much research suggesting that fear of crime can severely influence people with SMI, even if they have not been a victim of crime themselves (e.g. Whitley and Prince, 2005). In the same way, people in recovery remain acutely aware of the potentially damaging effects of stigma, and thus engage in various preventive strategies. These strategies all hinge around the concept of normalcy: being normal, looking normal, acting normal, doing what normal people do. Participants appear to possess a benchmark of normalcy to which they regularly compare themselves. Their actions and aspirations appear to be constructed with this benchmark in mind. For example, many participants associated normalcy with factors such as looking clean, taking pride, and being a productive member of society. This normalcy is considered to be a robust defense against potential stigma, and is deployed psychologically and socially to shore up self-esteem. It also has a strong semiotic dimension, indicating to themselves and the outside world the successful progress of their recovery. The results raise the question of the influence of the recovery communities themselves on stigma and recovery. We noted that the recovery communities appear to act as psychic shelters or protective cocoons. Indeed the overarching experience of residents within the communities was one of acceptance; the community being a place where they could be themselves and let down their guard without fear. For the vast majority of participants, the communities fostered valuable peer support which improved morale and self-esteem. This is in line with other research that shows the importance of peer support in recovery (e.g. Verhaeghe et al., 2008). The only clear exception to this was the experience of the few so-called ‘bad apples’ e community residents whose repeated actions risked exposing the whole group to the Foucauldian gaze and further stigma. These individuals were ostracized by the wider

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recovery community, with some being evicted by near consensus amongst the residents. This indicates the power of the developing norms within the recovery community, as well as the efforts of the majority to preserve the treasured normalcy. In his famous thesis on the social interaction of everyday life, Goffman (1959) made a distinction between backstage (private) and frontstage (public) settings. Our results suggest that for the vast majority of participants, the recovery communities offer a safe backstage sanctuary which provides a physical and ontological space for recovery. This space also reinforces strategies of stigma management through helpful peer support. The mere presence of this safe backstage space is especially important given that most of the participants had spent much time homeless e effectively without a secure backstage space. The findings suggest that the above described backstage activities positively influence ‘performance’ on the frontstage space. The precise nature of this frontstage space is important to consider in any study of stigma. In the present study, the frontstage space refers to the immediate neighborhood and wider Washington DC. Washington DC is a unique city in many ways. According to the 2010 census, over half of the population of the District classify themselves as ‘Black or African American alone’. It is still affectionately known as ‘Chocolate City (with Vanilla suburbs)’ by some long-term residents. Indeed almost all of the recovery communities are located in the overwhelmingly Black inner-city (and relatively low-income) NE and SE quadrants of the city. In other words, there is racial and income congruence between participants and the wider neighborhood e which may be critical in explaining the successful frontstage ‘performance’ of participants in this study. For example, much research indicates that local ethnic density has multiple psychosocial benefits for minorities with SMI inasmuch as it allows them to better fit-in, in contrast to places with less ethnic density (Halpern, 1993; Whitley et al., 2006). Indeed, our results suggest that local ethnic (and income) density create a favorable frontstage that makes it relatively easy for the predominantly low-income African American participants to blend in. Interestingly, participants almost never mentioned racial or gender issues during the research interactions. This may be due to the fact that residents essentially live in overwhelmingly Black neighborhoods (in a majority Black city), and further indicates the overwhelming salience of SMI (compared to other variables such as race) as marking them out as potentially different from their neighbors given the local demographics. Ironically, one of the few times racial issues arose was related to participants’ concerns during the research that the first author would stand out in the neighborhood by virtue of being a White outsider. As such, participants would insist on accompanying the first author to bus and metro stops, indicating their own sense of comfort in the neighborhood environment. Many participants stated that this was a sensible precaution, though others thought it superfluous with one light-heartedly remarking ‘He’ll be alright. They’d think he’s either a cop or a social worker’! The study has several limitations, one of which relates to the singularity of the frontstage context just described. Study participants were overwhelmingly from a similar demographic, in that they were mainly low-income middle-aged African American women. They lived in predominantly African-American neighborhoods in a predominantly African American city. As such, results may not be transferable to settings with less ethnic (and income) density. Participants also received excellent psychosocial services and had been in recovery for some time. It may be that people with untreated (or badly treated) SMI are more vulnerable to stigma. Further research could clarify if the findings from this study regarding the control and management

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of stigma are applicable elsewhere. Another limitation of the study is that focus groups allow researchers to access overall and collective perspectives; however this methodology is not ideal for eliciting deviant or outlier perspectives. As has been stated throughout, the results should be considered a reflection of an overarching consensus, which might not be shared by those residents who self-selected out of the study, either by dropping out or not enrolling in the first place (for example the ‘bad apples’ previously referred to, who did not take part in the research). Finally, while qualitative research methods are well suited to access felt (internal) stigma, as well as management strategies to control stigma, they are not best suited to measure enacted stigma. For example participants may have unknowingly been passed over for jobs because of their mental illness. Other research methods may be better suited to access factors such as enacted stigma.

5. Conclusion This study is unique in that it examined reactions and responses to stigma. It allowed us to explore how far the intensive delivery of services, in combination with recovery housing, affected stigma. Within the (backstage) recovery communities themselves, most participants could let their guard down and be themselves, reporting that the peer support found therein gave them the strength and sustenance to embrace the (frontstage) outside world. When interacting with this outside world, we noted that participants did not report high levels of directly experienced stigma. However they engaged in conscious social and psychological strategies which revolved around being, acting and looking ‘normal’ to avoid and preempt both internal (felt) and external (enacted) stigma. We have noted that these processes may be facilitated by the ethnic and income congruence between individual participants and the wider neighborhood. Participants proudly presented their ‘normality’, and indeed their agency, as prized possessions that are consequences of an ongoing process of recovery, supported by innovative and supportive recovery oriented services. In this sense, ‘normality’ is considered to have a strong semiotic value which signifies recovery. It should be noted that participants in this study were all receiving a comprehensive set of services that focused on psychosocial recovery as well as medical needs. This included medication management, supported employment, illness management programs and supported housing. Other research indicates that these services can enhance empowerment and selfesteem, which in turn reduces levels of stigma (e.g. Corrigan, 2002; Jensen and Wadkins, 2007). In other words, attention to the psychosocial needs of people with SMI, through both peer support and comprehensive psychosocial health services, appear to be fundamental factors that can reduce stigma and facilitate recovery. Malcolm Muggeridge (1988; p112) wrote, with much wisdom, that ‘the true wonder of life is indeed its ordinariness’. Stigma and discrimination has worked against the achievement of such ordinariness (or normality) in the lives of people with SMI. This is especially so in the present sample, the majority of whom have experienced regular homelessness, hospitalization, unemployment and exploitative relationships. This paper shows how people with SMI strive to attain a degree of ordinariness, which many people without SMI take for granted. Though this is an ongoing effort, any achieved normality becomes a carefully treasured possession that allows people with SMI to face and embrace the world with pride and dignity. Such processes may have been overlooked in the literature, and deserve further scholarship.

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