What is at stake? Exploring the moral experience of stigma with Indian-Australians and Anglo-Australians living with depression

Abstract

This article applies the framework of moral experience to examine the cultural experience of stigma with Indian-Australians and Anglo-Australians living with depression in Melbourne, Australia. To date few studies have examined this dynamic in relation to mental illness and culture, and no studies have applied this framework in a culturally comparative way. Based on 58 in-depth interviews with people with depression recruited from the community, we explicate how stigma modulates what is at stake upon disclosure of depression, participants’ lived experience following that disclosure, and how practices of health-seeking become stigmatised. Findings show that the social acceptance of depression jars against participants’ experience of living with it. Denialism and fear of disclosure were overwhelming themes to emerge from our analysis with significant cultural differences; the Anglo-Australians disclosed their depression to family and friends and encountered significant resistance about the legitimacy of their illness. In contrast, many Indian-Australians, especially men, did not disclose their illness for fear of a damaged reputation and damaged social relations. For Indian-Australians, social relations in the community were at stake, whereas for Anglo-Australians workplace relations (but not community relations) were at stake. Participants’ experiences in these settings also influenced their patterns of health-seeking behaviors and age and inter-generational relationships were important mediators of stigma and social support. These findings illuminate how stigma, culture, and setting are linked and they provide critical information necessary to identify and develop customised strategies to mitigate the harmful effects of stigma in particular cultural groups.

Keywords

Anglo-Australian Australia depression Indian-Australian moral experience stigma

Introduction

In this article we draw on the literature on stigma and moral experience to examine the experiences of stigma among Indian-Australians and Anglo-Australians living with depression in Melbourne, Australia. By describing “the felt flow of engagements in a local world” (Yang et al., 2007, p. 1528), our aim is to show how moral processes underpin stigma and how institutional and structural power can stigmatise and marginalise individuals. Specifically, we focus on the moral experience of stigma in our participants’ local worlds by identifying what is at stake upon disclosure of depression, participants’ lived experience following that disclosure, and how practices of health-seeking become stigmatised. Before we describe our participants’ experiences, we provide an overview of the theoretical framework informing our conceptual thinking as well as the study context that our analysis is situated in.

Stigma and moral experience

Over 50 years ago, Goffman (1963, p. 3) defined stigma as a deeply discrediting attribute located not so much in an individual as within social relationships. According to Goffman (1963), a person is assigned a negative characteristic—physical abnormality, failure of character, tribal stigma (like race, religion, nationality)—which a larger social group then uses as the basis to discredit and exclude the person. Since this seminal definition, the concept of stigma has been extended in several different ways; for example, Jones (1984) added to this definition by describing attributes that “marked” people as deviant within particular social contexts, Major and colleagues (Crocker, Major, & Steele, 1998; Major & O’Brien, 2005) extended it to show that stigma was socially constructed and that an individual’s social identity was devalued in particular societies in specific ways, and Link and Phelan (2001) conceptualised stigma as a confluence of labelling, stereotyping, separation, status loss, and discrimination, occurring within the context of a social, economic, and political struggle. Currently, there are several definitions of stigma and several hundred studies exploring the link between stigma and topics such as health conditions, poverty, gender, race, institutions, crime, and violence (Pescosolido and Martin, 2015, provide an excellent catalogue of current stigma research).

In this paper, we use Yang et al.’s (2007) theorising on stigma and moral experience to inform our analysis. We selected this framework because this work incorporates moral experience to stigma theory, an important addition because lived or social experience is the starting point of analysis to understand the moral processes that underpin stigma and the consequences of stigma on health and wellbeing (Kleinman & Hall-Clifford, 2009; Yang et al., 2007).

In this context, “moral experience” refers to how ethical expression and ethical interactions occur among ordinary people in the everyday within their habitus (Brodwin, 2013; Lambek, 2010; Mattingly, 2013). For most people, their everyday moral conduct is unconscious, interpersonal, continuously crafted, shaped by their habitus, and informed by the implicit rules governing different arenas of life such as work, family, and religion (Brodwin, 2013; Lambek, 2010; Sidnell, 2010). However, this means neither that people blithely move through their local worlds in an autonomic fashion nor that their habitus is fixed a priori, static, and unchanging. Rather, as moral practices are enmeshed with other everyday thoughts, feelings, and plans for action, it is through enacting or practising virtuous characteristics that moral conduct is realised and social norms and habitus reinforced or reshaped (Mattingly, 2013; Throop, 2010; Zigon, 2008). Thus everyday moral engagements and subjectivities signify: (1) a dialectical movement between the spoken (words, rules, and objects) and the implicit (bodily comportment, affect, and character) and; (2) freedom to choose what constitute moral subjectivities and moral self-making (Lambek, 2010).

With regard to stigma and moral experience, understanding the effect of stigma on the individual and how stigma is imbricated in social relationships within a particular habitus is critical. To achieve this Yang et al. (2007) advocate recognising the sociosomatic reticulum that people are enmeshed in—i.e. capturing the interconnection between values and physical experience—moral somatic—and between values and emotional states—moral emotional. Put more simply, the experience of being stigmatised may evoke responses located in physical, emotional, social, and cultural networks and it is important to examine the interrelatedness of these responses across these networks as well as the relationship between these responses and their wider social context (Yang et al., 2007).

Taking moral experience as a starting point to studying stigma also facilitates identification of what is at stake due to the stigmatising attribute in a particular habitus (Yang et al., 2007). A person’s attributes are stigmatised precisely because they challenge accepted moral norms, which in turn make up the social order. But just because the threat to social order may be commonly understood does not mean it affects everyone within that local world similarly. As discussed, the nature of the stigmatising condition is dialectical, threatening what matters in a local world, thus giving rise to marginalisation of the sufferer, threatening what matters most to them (Yang et al., 2007). But when threats present there is pause, deliberation, and reflection (what some scholars refer to as the “ethical”¹), where each individual stops to more formally consider how to conduct herself, morally and ethically, in response to this threat. Such social threats prompt difficult conversations between everyday moral talk and the formal language of ethical conduct, filtered through the structuring conditions and collective responsibilities that shape people and their habitus (Kleinman, 1999, 2006). In other words, social threats compel people to grapple with how to respond (action) in relation to who they think they are (ethical ideals), a struggle that is circumscribed by the social, political, economic, and other forces that shape their everyday lives. Moreover, by making decisions about what is in/tolerable, people also inhabit, cultivate, experiment, and transcend their lives, potentially creating new “beginnings” and “second chances” (Das, 2007; Mattingly, 2013). Thus ordinary life is replete with symbolic density and there has been scholarly counsel to “descend into the ordinary” to capture this density (Brodwin, 2013; Das, 2007, 2010; Lambek, 2010; Mattingly, 2013). Cheryl Mattingly (2013) has done the difficult work of integrating several anthropological and philosophical critiques, offering three tropes to study everyday moral experiences: first, scholars should be mindful that “to do is to suffer”—i.e. because individual decisions are made in a social context and have consequences, attention to an individual’s agency must also include attention to the suffering associated with exercising such agency. Second, consideration must be given to how ordinary social and physical spaces become sites for critique but also sites for reflection, hope, and experimentation. Third, the temporal nature of moral experiences should be recognised because these experiences are part of a larger life trajectory, which have an antecedent and an afterlife, where transformation occurs through everyday experimentations with the normative (Mattingly, 2013).

Using moral experience to understand experiences of stigma in local worlds is important, especially when overlaid by culture and attention to how stigma is experienced across local worlds. To date few studies have examined this dynamic in relation to mental illness and culture and these studies have mainly been based on people living in low- and middle-income countries (e.g. Koschorke et al., 2014; Raguram, Raghu, Vounatsou, & Weiss, 2004). Yang and his colleagues’ work is one of the few exceptions that we could find of work done in Western settings with people living with mental illness (Chen, Lai, & Yang, 2013; Cheng, Tu, Li, Chang, & Yang, 2015; Yang et al., 2014). His studies with Chinese-American immigrants living with psychosis reveal that the stigma of mental illness intersects with the stigma of worklessness, with those under- and unemployed experiencing greater stigma than those in full employment. In contrast, participants who were in full employment were able to mediate the stigma of mental illness in their culture by emphasising their productivity by working. Thus, as Yang et al. (2014) show, stigma is a multi-layered process involving social and structural discrimination, playing out differently in different cultures (Chen et al., 2013; Cheng et al., 2015; Yang et al., 2014). However, these studies have mainly been confined to Chinese communities in the US and do not compare how immigrant views about stigma and mental illness may differ from the broader community. The literature on stigma and moral experience can be extended further by exploring how local cultural processes and structures inform lived experiences of stigma and mental illness across cultural groups (both mainstream and minority groups). Moreover, by testing existing theoretical frameworks across cultural groups in different cultural settings, we can sharpen their applicability. The present study sought to compare the moral experience of stigma among Indian-Australians and Anglo-Australians living with depression in Melbourne, Australia.

Study context

Melbourne is the state capital of Victoria and is the second most populous city in Australia (pop. 4.4 million), spread over 10,000 km² (Australian Bureau of Statistics, 2013). The city has experienced rapid growth in its urban boundaries in the last decade, in part as a result of a growing migrant population. The Indian-Australian community, which is the fastest growing immigrant community in Australia, is concentrated in Melbourne (Department of Immigration and Citizenship, 2013). An estimated 105,000 Indian-Australians or about 35% of the total Indian-Australian population live in Melbourne, which is 3% of the total city population (Australian Bureau of Statistics, 2014).

Currently, there are no data available on the prevalence of mental illness in the Indian-Australian community or on use of mental health services by this community. In general, Australian immigrant communities are considered more vulnerable than the mainstream population because they are half as likely as white Anglo-Celtic Australian-born communities (hereafter Anglo-Australian) to utilise mental health services (Australian Institute of Health and Welfare, 2010). In Victoria, immigrant and refugee communities have consistently been found to have lower rates of access to public community and inpatient mental health services, a higher proportion of involuntary admissions, and higher proportions who are diagnosed with a psychosis (Klimidis et al., 1999a, 1999b; Stolk, Minas, & Klimidis, 2008).

Whilst there are many barriers to mental health service use among immigrants, a critical barrier is the greater stigma attached to mental illness in immigrant communities than in Australian-born communities (Minas et al., 2013). Even within Anglo-Australian communities, despite more than a decade of public health campaigns addressing the stigma of mental illness, several community-based studies show that depression is perceived as a sign of weakness and that people with depression are dangerous (Griffiths et al., 2006; Jorm, Christensen, & Griffiths, 2005; Jorm, Korten, Jacomb, Christensen, & Henderson, 1999). Overseas studies also show that people with depression are often considered to be weak, lazy, incapable of coping with life, and inferior (Raguram, Weiss, Channabasavanna, & Devins, 1996; Schreiber & Hartrick, 2002; Williams & Healy, 2001).

Not surprisingly, such negative community perceptions have effects on people living with depression; fears of being stigmatised and discriminated against have been reported by people with depression in relation to disclosure of their illness to family, friends, work colleagues, and health professionals (Dinos, Stevens, Serfaty, Weich, & King, 2004; McNair, Highet, Hickie, & Davenport, 2002; Van Hook, 1996; Williams & Healy, 2001). To overcome these community perceptions, especially among hard-to-reach groups such as immigrant communities, culturally specific and salient anti-stigma campaigns are needed; for these campaigns to be developed, strategic, practical, and theoretical multicultural mental health research, such as this study, provide critical foundation stones (Minas et al., 2013).

Methods

Data for this article come from a larger qualitative study investigating depression and health-seeking in Indian-Australian and Anglo-Australian communities. As we have previously published descriptions of our methods (Brijnath, Antoniades, & Adams, 2015), below we provide a very concise overview. A qualitative descriptive approach was taken (Sandelowski, 2000). Such an approach is suited to the study’s purposes because it facilitates a textured analysis of what participants articulate about stigma, how they express it, and how context modulates experience (Brodwin, 2013).

After approval from the Monash University Human Research Ethics Committee, 58 participants with a depression diagnosis were recruited from the community. Interviews were conducted between May 2012 and May 2013. The mean age of participants was 39.9 years (SD = 15.8 years), there were slightly more women in both groups (Anglo-Australian women = 20/30 [66%], Indian-Australian women = 15/28 [53.6%]), and the average length of stay in Australia among Indian-Australians was 9.9 years (SD = 9.28 years).

Recruitment and data collection were completed by both authors. After written informed consent, participants were interviewed about their depression. Participants were asked about community perceptions of depression, support received from family and friends, experiences of stigma, and barriers to help-seeking; questions around moral and ethical conduct were not explicitly asked. Interviews were carried out in-person in places such as participants’ homes, libraries, parks, coffee shops and university offices, lasted approximately one hour, were conducted in English, and audio recorded.

Interviews were professionally transcribed, checked by the authors, then de-identified and pseudonyms were assigned. Thematic analysis, led by the first author, was completed (Braun & Clarke, 2006; Ryan & Bernard, 2003). Data interpretation was cross-checked by an independent colleague; interpretive differences were resolved by consensus. Further analysis was undertaken in NVivo v.10 (QSR International 2012, Melbourne).

Findings

Many participants felt that compared to a decade ago, there was greater social understanding of depression, more public willingness to talk about it, greater support for sufferers to seek professional help and therefore reduced stigma surrounding the illness. Stephen, a 62-year-old Anglo-Australian man, who had grappled with depression for more than 25 years, said:

I hid it and I hid going to see a psychiatrist because I was embarrassed about it because in those days people thought, “Naturally, you are crazy to see a psychiatrist”. Now it’s different these days. It’s more acceptable.

Sensitive media coverage, major public health campaigns, and disclosure by various public celebrities of their depression were associated with this change. Susan (female, 45, Anglo-Australian) said, “When you read about famous people or rich people that have got depression, it makes it sort of more accepted by society”.

However, this social acceptance of the illness “depression” jarred against participants’ experience of living with it. Denialism and fear of disclosure were overwhelming themes to emerge from our analysis with significant cultural differences; the vast majority of Anglo-Australian participants reported that they disclosed their depression to family and friends and encountered significant resistance about the legitimacy of their illness. In contrast many Indian-Australians, especially men, did not disclose their illness to close family and friends for fear of a damaged reputation and spoiled social relations. What was at stake also differed across the two groups; for Indian-Australians, social relations in the community were at stake whereas for Anglo-Australians, workplace relations, but not community relations, were at stake. Participants’ experiences in these settings also influenced their patterns of health-seeking. Below we expand on how the moral experience of stigma affected participants’ disclosure of their depression, their lived experience following disclosure, and how stigma influenced their health-seeking behaviours. Permeating our analysis is a constant focus on the moral experience for those who are stigmatised and those who would stigmatise.

To disclose is to suffer

Disclosure of one’s depression status was a significant event for Anglo-Australians. For those who chose to disclose, the disclosure communicated that something was wrong and that they required external help and support. Disclosure about depression was perceived as an act of individual agency and transformative. Nearly all Anglo-Australian participants talked about how liberating it was to disclose their depression and seek help. For example, Karen (female, 45, Anglo-Australian) said, “It was a relief to actually let more people know that I needed help”. However, disclosure also entailed suffering the consequences of admission. Being met with denial and resistance from family and friends was the start of the stigmatising experience of depression for many Anglo-Australian participants: Greg (male, 67) said, “I have three daughters and while they love me, they didn’t want to talk about it”. Similarly, Amanda (female, 67) reported, “People really don’t want to know, put their blinkers on” and Jade (female, 34) said, “With depression there’s more of an attitude out there that you need to make sure that it’s really a medical problem… it’s a slight sort of need to be convinced that your depression is legit”.

Following denialism, Anglo-Australian participants said that there was a reluctant acceptance of their depression by their family members. However, this acceptance did not translate into understanding and the dialectic between an explicit acceptance and implicit denialism of participants’ depression remained. Many participants reported being told to “snap out of it”, “get over it”, “suck it up”, and “toughen up”. Such language was more often used by older family members and evoked the British-Celtic heritage of many Anglo-Australian participants where a “stiff upper lip” was seen as a coping strategy for living with adversity. It also highlighted that for study participants, even with depression, they were expected to portray outward calm, a cognitive capability to fulfil activities of daily living, fortitude, and to suppress their distress. As Natalie (female, 31) explained:

Natalie: My family is very Anglo. They have a British background and British are quite emotionally detached.

Interviewer: Stiff upper lip.

Natalie: Yes. You know, worst case scenario happens, so let’s make a cup of tea. So, that was an issue for me.

Similar to the Anglo-Australian participants, Indian-Australians also faced pressure to not disclose their depression and maintain a façade of “normality” and perform everyday activities. However, Indian-Australians did not invoke the phrase, “stiff upper lip”, but instead conflated depression with madness. For these participants, the stigma of depression was not an attribute that discredited individuals, but affected a whole social network. The depression enveloped the “marked” person and those associated through ties of kinship and community:

With [the] Indian community depression is seen as “paagal” (madness). “Vo to paagal hai” (“that person is mad”). You do not want to be categorised like that. (Ira, female, 72, Indian-Australian)

It’s a social statement that, “Oh he has depression, I don’t want to get close to him”. And it’s almost like people think it’s contagious. (Nikhil, male, 25, Indian-Australian)

As evidenced from these quotes there was significant stigma associated with depression and mental illness in Indian-Australian communities. Not wanting to disclose their depression to close family and friends, thereby risking reputational damage, was a protective strategy used by several participants. Participants feared being ridiculed and seen as weak:

I feel pretty embarrassed… I’m spoiling my image. I’m not this person. (Vinod, male, 29, Indian-Australian)

Extended family and friends. I wouldn’t want to share anything like this, they will not be supportive, they will instead just mock… and it will become the mock of the town. (Zeenat, female, 24, Indian-Australian)

For young Indian-Australian men, disclosure was also overlaid with the dual concerns of burdening older family members with their diagnosis and failing to forge a successful migrant story by having a depression diagnosis. Eight of the 10 Indian-Australian men in our sample under the age of 35 had left their families in India to pursue employment and further study in Australia. This was the first time they had been outside of India and they felt pressure to succeed and become independent. Non-disclosure was a deliberate and morally reflexive decision, where responsibilities and conduct were configured locally and transnationally in Australia and India:

I don’t dare to speak about my weaknesses to them… [that] I am no more normal or like what in their term, [is a] so-called “perfect person”. So I don’t want to lose that image of mine. And other way I feel that like being the elder son I should not like trouble them… I don’t want anyone spending time solving my problems. (Harish, male, 25, Indian-Australian)

We have to stand up one day, where the parents have to be left. They’ve done their part of raising [us] up and getting us a job and getting a career, they don’t need to interfere per se. And secondly you should not give them the burden of what is happening in your personal life, you should be strong enough to handle on your own, because they have handled in their life, so why do you think you should bring your problem back to them? Let them live their life. (Saurav, male, 34, Indian-Australian)

Life after disclosure: What is at stake?

Among the few Indian-Australians that did disclose their depression, there were repercussions. At stake were social relations including compromising one’s position within the family and community, being excluded, and ridiculed. Access to shared physical and social spaces (such as temples, community halls) was also reduced through exclusion from social activities and functions (e.g. religious events, weddings) due to the stigma of depression:

They didn’t bother. They didn’t care. They had their own world and they had their own functions, they have [their] own parties. With the community, people started ignoring me, they don’t invite me, nothing. (Dia, female, 59, Indian-Australian)

She [aunt] would just be really like mocking about it [depression]. She’d actually say I was blackmailing people. “Why I’m using that against people to get my way?” and things like that. (Pragya, female, 27, Indian-Australian)

[An] orthodox family like mine would never understand the concept of depression and personal space… So they wouldn’t actually come around to the fact that their son had an issue. (Nikhil, male, 25, Indian-Australian)

In contrast, for Anglo-Australians what was most at stake were work relations and future employment prospects. Institutional workplace discrimination was a strong theme to emerge from our analysis of Anglo-Australians transcripts. Fears of being labelled, treated differently, experiencing a loss of confidence by colleagues and employers, and missing opportunities to advance in one’s career were repeatedly mentioned by participants:

He [boss] was kind of very happy for me to resign, and kept getting at the fact that things are changing and it is a different place now… which I kind of took as… you are not really welcome back. (Melissa, female, 29, Anglo-Australian)

[They] are more likely to view you as a liability, “Oh we don’t want to employ such-and-such, we don’t put such-and-such on to that project ‘coz everyone knows they are little bit you know”. Yeah I did get that kind of attitude out of one of the most senior people on site. (Hannah, female, 32, Anglo-Australian)

Only three participants explicitly challenged existing stigmas by finding ways to embody their illness and amalgamate it into their identity. All three of these individuals were Anglo-Australian women and none of them were in the workforce (two were university students and the third had retired). For example, 19-year-old Olivia incorporated her depression into her identity, explaining:

Oh yeah, I’m a crazy girl and I’ve always been the crazy girl since I was a kid. I’ve always been the crazy one, the freak, the feral, but now that I’m older I’ve just embodied it. I don’t really care anymore.

When asked to expand on how she embodied “it”, Olivia explained that she freely disclosed her depression and openly discussed her sexual activities amongst her peers at university and in her social circle. She styled herself an “emo-chick” and physically presented herself in particular ways:

I wear what I want to wear. I do my hair the way I want to do my hair. I get piercing whenever I really can afford it. You know, I have my tattoo and I’m getting more and I just don’t feel the need to [conform]. You know, all the girls they wear makeup every day. It’s like I don’t want to wear makeup every day.

While Olivia sought to challenge the status quo through overt displays of alterity in appearance and behaviour, 74-year-old Lynette was a quiet contender, confronting implicit assumptions around depression causality: “If people don’t understand depression, they say things like, ‘Well, what are you depressed about?’ And that is just like a red rag to a bull with me”. What mattered to Olivia and Lynette was challenging the stigma around depression by questioning the implicit assumptions around depression embedded in their social world—i.e. that people were weak, incapable of coping with life, and inferior. Whether through dress, dialogue, or participation in a subcultural movement, they sought to overturn existing prejudice through their engagement with other people, emplacing themselves in social and physical spaces that might otherwise have excluded them. In contrast, 24-year-old Katherine, who had struggled with depression for nine years, now saw her illness as an intrinsic part of her identity. For her, what was at stake was relinquishing a part of herself by seeking help: “I guess I’ve been living with it for so long that it felt like it was part of who I was and the idea of getting treatment and possibly getting better terrified me”.

Stigma and health-seeking

The moral experience of stigma—the imperative to maintain a stiff upper lip, present a façade of calm and fortitude and suppress distress—in tandem with the stigma participants encountered in community and workplaces left an impression on participants’ patterns of health-seeking. Both groups were oriented to self-managing through self-medication and self-transformative lifestyle practices (e.g. exercise, yoga). The architecture of the health system including barriers of access and cost, underpinned by neoliberal ideologies, further reinforced the imperative to self-manage. As we have described these structures elsewhere (Brijnath & Antoniades, 2016a), here we highlight how two practices of health-seeking—medication and counselling—become socially and spatially marginalised because of the stigma of depression.

Medications, including pharmaceuticals, illicit drugs, alcohol, and complementary and alternative medicines (CAM), were prescribed or procured legally (e.g. alcohol from a local supermarket), illegally (e.g. marijuana from a street dealer) and/or transnationally (e.g. by Anglo-Australians buying medicines online and by Indian-Australians from India). These kinds of practices of self-medication were stigmatised themselves because of their associations with depression and addiction (Brijnath et al., 2015). In different cases different stigmas intersected and overlapped (e.g. the stigma around depression and drug taking) and so participants risked much through these self-medicating practices. Nevertheless participants persevered because what mattered most for them included relief from the symptoms of depression (particularly symptoms such as sleeplessness, sadness, and agitation) and improvement in function and performance (e.g. work productivity, social relationships, sexual function). However, the dialectic between an explicit social acceptance of depression and implicit denialism of it happening to one’s parent, spouse, child, sibling, etc., modulated spatio-temporal practices of self-medicating, especially for Anglo-Australian participants. Many Anglo-Australian participants reported being categorically told by family and friends that medicines were to be consumed on a short-term basis and to be taken in private (Brijnath, 2015; Brijnath & Antoniades, 2016b).

The office of the psychiatrist or psychologist was also a stigmatised space but interestingly more so among Anglo-Australian participants than Indian-Australian ones. This might have been because the strong reactions Indian-Australians encountered on disclosing their depression to family members and friends could have discouraged subsequent information sharing around health-seeking. It was not that there was no stigma around utilising mental health services; rather, we speculate that the initial stigmatising response could have reduced the potential for community conversations around mental illness and help-seeking. In contrast, several Anglo-Australians talked about the stigma around seeking counselling from a psychologist or psychiatrist, whereas only one Indian-Australian reiterated the same:

Jane [my friend] is the only one that knows that I go to a psychiatrist, and we sort of never mentioned the word. I’ll just say, “I’ve got an appointment with Fred”. (Amanda, female, 64, Anglo-Australian)

Most of my Australian friends know that I go to a psychologist but I don’t tell to the Indians… if I tell them it’s like their eyes are like that, “Oh stay away she’s not right, stay away from her”. (Seema, female, 32, Indian-Australian)

Explicitly involving family in therapy and recovery processes via activities such as driving a participant to the therapist or partaking in group therapy were also frowned upon by family members according to the participants of both groups. Participants reported that the denialism and reluctant acceptance of their depression by other family members often meant that while family were prepared to be supportive in some ways (e.g. childminding or financial assistance), they did not want to be overtly involved in the therapeutic journey. But this was mediated by age and inter-generational relationships; participants reported that older family members, such as parents and older siblings, were less likely to participate in or support therapeutic recovery practices compared to young members, such as adult children or younger siblings. Those who were middle-aged and older were also more likely to describe receiving considerable support in health-seeking from their families, whereas younger participants said their concerns were often dismissed:

I went to family therapy sessions. And my mother was devastated, even my dad, because I asked them to come. And it was terrible. (Anita, female, 46, Anglo-Australian)

My ex-husband is from a big family and I’m really close to his mom. I was close to a couple of his brothers and sisters but I felt they were saying, “Oh, don’t be bloody stupid. You’ll be fine, get on with it”. You know what I mean? I felt like I was swimming upstream. (Susan, female, 45, Anglo-Australian)

Susan’s analogy of “swimming upstream”, i.e. opting for a difficult course of action against safer, more conventional thinking, draws attention to the embodiment of being the odd one out, of struggling against the current and feeling like one was drowning. For Susan such an experience was distressing and dehumanising:

Feeling like you’re not a normal part of human society, being made to feel like that by various people whether it’s family or friends or GPs or whatever. It’s not a nice feeling but when you do see someone like my psych that I saw and they make you realise, “Yeah, you’re okay. You’re human, you just got depression”.

Akin to Susan, several participants reported therapeutic benefits from counselling using descriptors such as “helpful”, “she understood me and my soul”, and a “huge part [of my recovery]”. Others attributed a disconnect between themselves and their therapist as the main cause of a less successful experience. No socio-demographic or cultural factors were found to influence either relationship; rather, the emphasis was on rapport and mutual understanding between the therapist and the patient.

Discussion

Our aim in this article was to describe the experience of stigma among Indian-Australians and Anglo-Australians living with depression through the prism of moral experience. In doing so, we wanted to show how “the felt flow of engagements in a local world” imbricates stigma in social relationships and embeds it in institutional and structural forces that can marginalise and disadvantage people (Yang et al., 2007, p. 1528). Adding moral experience to understanding stigma makes explicit what is at stake across social relations and cultural domains (Kleinman & Hall-Clifford, 2009; Yang et al., 2007). This theoretical lens has mainly been applied to people living with mental illness in low- and middle-income countries; Yang et al.’s studies were the only ones we could find that applied this theory to Chinese-Americans with psychosis in the US (Chen et al., 2013; Cheng et al., 2015; Yang et al., 2014).

Building on this body of research, our findings extend the literature in four ways by showing that: (1) everyday moral talk is multi-layered and contradicts not only with the formal language of ethical conduct but also with itself in public and private social spaces; (2) the experience of the stigma of depression is heavily influenced by age and inter-generational relationships, and these two factors are important mediators of stigma, social support, and health-seeking; (3) what is at stake differs significantly across cultural groups in the same local world; and (4) the constant tension between what is at stake for people with depression versus what is acceptable to the wider community configures the spatio-temporal dimensions of stigma and health-seeking. We expand on these points below.

First, the lived experience of being depressed differs significantly from the social acceptance of depression in a local world. In line with previous studies (Jorm, Christensen, & Griffiths, 2006; Kelly & Jorm, 2007), our participants reported greater community awareness and understanding of depression. However, this did not translate into tolerance of the illness by participants’ families. Denialism and fear of disclosure were common themes reported by Indian-Australians and Anglo-Australians, findings also made in other Australian and overseas studies (Dinos et al., 2004; McNair et al., 2002; Van Hook, 1996; Williams & Healy, 2001). Exploring what is at stake, it appears that for people with depression, disclosure is a double-edged sword. On the one hand, disclosure is a cry for help, an act of individual agency, and moral meaning-making. On the other hand, such an act brings consequences. Disclosure begets suffering and a loss of social esteem as the label “depression” signals weakness, dependency, danger, and lack of control. To counter these perceptions, there was a constant emphasis by study participants and their family members to not speak about depression. Thus, there was continuous dialectical movement between the spoken social acceptance of depression and the tacit denial of it occurring within their own family. However, while non-disclosure in both communities was common, the underlying logics flowed along different cultural lines: Anglo-Australians were entreated to maintain a “stiff upper lip” and Indian-Australians were counselled to avoid the taint of madness by not disclosing their illness. Anglo-Australians valued the embodiment of fortitude and stoicism, whereas for Indian-Australians revealing a diagnosis of depression compromised social relationships because of the fear of contagion. Thus there were different reasons for non-disclosure, driven by different stakes.

Second, for both communities, the stakes for families and friends appeared to be a heightened sense of responsibility for the person with depression and a greater need to monitor and control the latter’s potentially disruptive behaviour. As previous studies have shown, lack of understanding of depression could be a driving force behind this reasoning (Griffiths, Christensen, & Jorm, 2008; Jorm, 2012). There was particular resistance expressed by older family members in knowing about the illness, accepting it, and participating and/or supporting health-seeking and recovery, which concords with findings in the literature (Farrer, Leach, Griffiths, Christensen, & Jorm, 2008). While Anglo-Australians talked more indirectly about the lack of support they received mainly from older family members, Indian-Australians, especially men, explicitly made the link between adulthood, control, and the threat depression posed to a successful migrant story. For these men, non-disclosure was a strategic and morally reflexive decision crossing transnational spaces. By invoking ethical imperatives from India to configure their responsibilities and moral conduct in their local habitus in Australia, these participants also protected their social “wins” such as maintaining perceptions of an unspoiled image and smooth transition to adulthood with their older family members in India.

Third, while disclosure changed how participants moved through social and physical spaces, there were notable cultural differences. For Anglo-Australians, stigma threatened function and capacity in the workplace, where labelling, stereotyping, separation, status loss, and discrimination might ensue from the disclosure of the diagnosis of depression. For Indian-Australians, stigma threatened social relations, social inclusion, support, and a sense of belonging within familial and community spaces. What mattered most for Anglo-Australians was work relations, whereas for Indian-Australians, what mattered most was social relations within families and in the community. This finding is similar to Yang and colleague’s previous studies (Cheng et al., 2015; Yang et al., 2014) which found that work was a protective factor against the stigma of mental illness amongst Chinese-Americans and what really mattered for these participants was employability. However, our finding is unique in that in our study the Anglo-Australian community expressed this sentiment whereas the Indian-Australian community did not. This is an important difference because not only do moral stakes differ by cultural groups in the same local world, but also across local worlds. We cannot assume that what applies to one immigrant group in one setting will carry across to other immigrant groups in different settings—such assumptions are erroneous, yet often made in the research literature. Each migration experience is unique. It may be that Indian-Australians’ experience of stigma by their families and communities discouraged further disclosure, such as in the workplace; we can only hypothesise on this as it was not conclusively demonstrated in our data. Nonetheless, whether in work or social settings, participants who disclosed their depression suffered; for Anglo-Australians this included reduced confidence from colleagues and supervisors, missed opportunities for career advancement and job loss, whereas Indian-Australians experienced reputational damage and social isolation from their community.

Only three Anglo-Australian women, amongst 58 participants, explicitly challenged stigmas around depression. Their voices give insight into how resistance to stigma may be embodied; how illness may become a part of subjectivity, not always in a negative way; and how stigma may be challenged in everyday spaces, such as university campuses, and in ordinary ways, such as through talk with one’s social circle. The capacity of individuals with mental illness to resist stigma, and the correlation between resistance and improved quality of life is a growing line of research inquiry to which this study offers only the most modest of contributions (Sibitz, Unger, Woppmann, Zidek, & Amering, 2011; Thoits & Link, 2015).

Finally, the constant tension between what is at stake for people with depression versus what is acceptable to the wider community configures the spatio-temporal dimensions of stigma and health-seeking. On the one hand, taking medication, seeing a psychiatrist, and involving family in collaborative practices of health-seeking and recovery were stigmatised by family and community. Health-seeking was to be a private, short-term activity, not openly discussed, a finding also made in several studies pertaining to other stigmatised health conditions such as HIV/AIDS, schizophrenia, and mental illness (Roberts & Mann, 2000; Rogers et al., 1998; Smith, Francis, & Rowley, 2000). On the other hand, for people with depression, the need to seek relief, minimise suffering, and facilitate recovery was important, driving them to continuously balance the stigma of depression against the need to seek care. At times, this balancing act involved practices of self-medicating, which amplified the risks as several stigmatising behaviours converged (e.g. the stigma of depression and the stigma around drinking alcohol to excess). On other occasions, practices such as seeking counselling provided therapeutic benefit and helped people in their recovery from depression. But what the association is between disclosure of mental illness, illness performativity, and recovery we cannot say; these are limitations in our current paper and which future research could examine. We are also limited in our ability to comment on how stigma and moral experience change by illness severity (e.g. psychosis), other social vulnerabilities (e.g. being a refugee versus an economic migrant, having low English proficiency), and when organisational policies and practices cumulatively disadvantage people with mental illnesses. Future research could examine these issues and document more thoroughly how stigma circulates in different local worlds, its moral dimensions, threats to social hierarchies, health and economic consequences.

Conclusion

Examining the stigma of depression through the theoretical framework of moral experience opens up new ways to examine old, seemingly intractable problems. By illuminating what is at stake, what emerges is the Janus-face of disclosure and the social production of stigma, modulated by factors such as culture, habitus, time, and space. Different settings have different stakes to different groups where no single public health campaign will solve the unique challenges of each group and setting. Rather, through a granular analysis of how stigma actually flows within and across local worlds, better understanding is made possible of the embeddedness of stigma within social relations and social settings and the need to keep conceptualising stigma as such, rather than as an individual attribute or mark of discredit. Lessons may be drawn here from anti-stigma campaigns, such as Canada’s Opening Minds, which reveal that targeted initiatives in specific settings (e.g. work, school, clinics) towards specific groups (e.g. employers, youth, health providers) that incorporate the lived experiences of people with mental illness and interdisciplinary partnerships between researchers and grassroots organisations go much further in tackling stigma than universal mass media public education approaches (Stuart et al., 2014a, 2014b). Furthermore, in order to develop targeted interventions, attention must be given to the potential health implications of stigma, which may include discrimination, reduced life opportunities, and increased physical and mental stress for the stigmatised person (Link & Phelan, 2001, 2006). Each of these consequences also manifests differently by context or setting. Understanding the pathways through which these consequences may be realised and how stigma and setting are linked, may help identify customised strategies targeting particular groups to mitigate the harmful effects of stigma in particular settings, rather than implementing a general one size-fits-all anti-stigma campaign (Keene & Padilla, 2014).

Footnotes

Note

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Bianca Brijnath was supported to undertake this research by a fellowship from the Australian National Health and Medical Research Council (NHMRC no. GNT1036154). Josefine Antoniades was funded to undertake this research by an Australian Postgraduate Award.

Acknowledgements

We thank Ms. Nabita Singh for her assistance with the recruitment of some of the Indian-Australian participants. Bianca Brijnath and Josefine Antoniades declare no conflict of interest, financial or otherwise.

ORCID iD

Bianca Brijnath .

Bianca Brijnath, PhD, is the Director of Social Gerontology at the National Ageing Research Institute (NARI), Australia. Her research expertise is in mental health in community-based settings and her published works focus on mental health and culture, mental health and care, and mental health and compensable injury.

Josefine Antoniades, BSc (Hons), PhD, is a Research Fellow at the National Ageing Research Institute (NARI), Australia. Her research explores how culture influences and modulates the conceptualisation of depression and health-seeking behaviours in the Sri Lankan diaspora and what differences (if any) there are from the mainstream Anglo-Australian community.

References

Australian Bureau of Statistics. (2013). 2011 Census QuickStats. Retrieved from http://www.censusdata.abs.gov.au/census_services/getproduct/census/2011/quickstat/2GMEL?opendocument&navpos=220.

Australian Bureau of Statistics. (2014). 4102.0 – Australian Social Trends, 2014. Retrieved from http://www.abs.gov.au/ausstats/abs@.nsf/Lookup/4102.0main+features102014#MELBOURNE.

Australian Institute of Health and Welfare (2010) Australia’s Health 2010, Canberra, Australia: Author.

Braun

Clarke

(2006) Using thematic analysis in psychology. Qualitative Research in Psychology 3(2): 77–101.

Brijnath

(2015) Applying the CHIME recovery framework in two culturally diverse Australian communities: Qualitative results. International Journal of Social Psychiatry 61(7): 660–667.

Brijnath

Antoniades

(2016a) “I’m running my depression:” Self-management of depression in neoliberal Australia. Social Science & Medicine 152: 1–8.

Brijnath

Antoniades

(2016b) Playing with antidepressants: Perspectives from Indian Australians and Anglo-Australians living with depression. Qualitative Health Research 27(13): 1970–1981.

Brijnath

Antoniades

Adams

(2015) Investigating patient perspectives on medical returns and buying medicines online in two communities in Melbourne, Australia: Results from a qualitative study. Patient 8(2): 229–238.

Brodwin

(2013) Everyday ethics: Voices from the front line of community psychiatry, Berkeley: University of California Press.

10.

Chen

F.-P.

Lai

G. Y.-C.

Yang

L. H.

(2013) Mental illness disclosure in Chinese immigrant communities. Journal of Counseling Psychology 60(3): 379–391.

11.

Cheng

Z. H.

M. C.

V. A.

Chang

R. W.

Yang

L. H.

(2015) Experiences of social and structural forms of stigma among Chinese immigrant consumers with psychosis. Journal of Immigrant and Minority Health 17(6): 1723–1731.

12.

Crocker

Major

Steele

(1998) Social stigma. In: Gilbert

Fiske

S. T.

Lindzey

(eds) The handbook of social psychology, 4th ed. New York, NY: McGraw-Hill, pp. 504–553.

13.

Das

(2007) Life and words: Violence and the descent into the ordinary, Berkeley: University of California Press.

14.

Das

(2010) Engaging the life of the other: Love and everyday life. In: Lambek

(ed.) Ordinary ethics: Anthropology, language, and action, New York, NY: Fordham University Press, pp. 376–399.

15.

Department of Immigration and Citizenship. (2013). 2012–13 Migration program report. Retrieved from http://www.border.gov.au/ReportsandPublications/Documents/statistics/report-on-migration-program-2012-13.pdf.

16.

Dinos

Stevens

Serfaty

Weich

King

(2004) Stigma: The feelings and experiences of 46 people with mental illness – qualitative study. British Journal of Psychiatry 184: 176–181.

17.

Farrer

Leach

Griffiths

K. M.

Christensen

Jorm

A. F.

(2008) Age differences in mental health literacy. BMC Public Health 8(1): 125.

18.

Goffman

(1963) Stigma: notes on the management of spoiled identity, Englewood Cliffs, N.J.: Prentice-Hall.

19.

Griffiths

Christensen

Jorm

(2008) Predictors of depression stigma. BMC Psychiatry 8: 25.

20.

Griffiths

Nakane

Christensen

Yoshioka

Jorm

Nakane

(2006) Stigma in response to mental disorders: A comparison of Australia and Japan. BMC Psychiatry 6(1): 21.

21.

Jones

E. E.

(1984) Social stigma: The psychology of marked relationships, New York, NY: W. H. Freeman.

22.

Jorm

(2012) Mental health literacy: Empowering the community to take action for better mental health. American Psychologist 67(3): 231–243.

23.

Jorm

Christensen

Griffiths

(2005) Public beliefs about causes and risk factors for mental disorders. Social Psychiatry and Psychiatric Epidemiology 40(9): 764–767.

24.

Jorm

Christensen

Griffiths

(2006) Changes in depression awareness and attitudes in Australia: The impact of beyondblue: the national depression initiative. Australian & New Zealand Journal of Psychiatry 40(1): 42–46.

25.

Jorm

Korten

A. E.

Jacomb

P. A.

Christensen

Henderson

(1999) Attitudes towards people with a mental disorder: A survey of the Australian public and health professionals. Australian and New Zealand Journal of Psychiatry 33(1): 77–83.

26.

Keene

D. E.

Padilla

M. B.

(2014) Spatial stigma and health inequality. Critical Public Health 24(4): 392–404.

27.

Kelly

C. M.

Jorm

(2007) Stigma and mood disorders. Current Opinion in Psychiatry 20(1): 13–16.

28.

Kleinman

(1999) Moral experience and ethical reflection: Can ethnography reconcile them? A quandary for “the new bioethics”. Daedalus 128(4): 69–97.

29.

Kleinman

(2006) What really matters: Living a moral life amidst uncertainty and danger, Oxford, UK: Oxford University Press.

30.

Kleinman

Hall-Clifford

(2009) Stigma: A social, cultural and moral process. Journal of Epidemiology and Community Health 63(6): 418–419.

31.

Klimidis

Lewis

Miletic

McKenzie

Stolk

Minas

(1999a) Mental health service use by ethnic communities in Victoria: Part I. Descriptive report, Melbourne, Australia: Victorian Transcultural Psychiatry Unit.

32.

Klimidis

Lewis

Miletic

McKenzie

Stolk

Minas

(1999b) Mental health service use by ethnic communities in Victoria: Part II. Statistical tables, Melbourne, Australia: Victorian Transcultural Psychiatry Unit.

33.

Koschorke

Padmavati

Kumar

Cohen

Weiss

H. A.

Chatterjee

Patel

(2014) Experiences of stigma and discrimination of people with schizophrenia in India. Social Science & Medicine 123: 149–159.

34.

Lambek

(2010) Introduction. In: Lambek

(ed.) Ordinary ethics: Anthropology, language, and action, New York, NY: Fordham University Press, pp. 1–36.

35.

Link

B. G.

Phelan

J. C.

(2001) Conceptualizing stigma. Annual Review of Sociology 27: 363–385.

36.

Link

B. G.

Phelan

J. C.

(2006) Stigma and its public health implications. Lancet 367(9509): 528–529.

37.

Major

O’Brien

L. T.

(2005) The social psychology of stigma. Annual Review of Psychology 56: 393–421.

38.

Mattingly

(2013) Moral selves and moral scenes: Narrative experiments in everyday life. Ethnos 78(3): 301–327.

39.

McNair

Highet

Hickie

Davenport

(2002) Exploring the perspectives of people whose lives have been affected by depression. Medical Journal of Australia 176: S69–S76.

40.

Minas

Kakuma

Too

L. S.

Vayani

Orapeleng

Prasad-Ildes

Oehm

(2013) Mental health research and evaluation in multicultural Australia: Developing a culture of inclusion. International Journal of Mental Health Systems 7(1): 23.

41.

Pescosolido

B. A.

Martin

J. K.

(2015) The stigma complex. Annual Review of Sociology 41(1): 87–116.

42.

Raguram

Raghu

T. M.

Vounatsou

Weiss

M. G.

(2004) Schizophrenia and the cultural epidemiology of stigma in Bangalore, India. Journal of Nervous and Mental Disease 192(11): 734–744.

43.

Raguram

Weiss

Channabasavanna

Devins

(1996) Stigma, depression, and somatization in South India. American Journal of Psychiatry 153(8): 1043–1049.

44.

Roberts

K. J.

Mann

(2000) Barriers to antiretroviral medication adherence in HIV-infected women. Aids Care – Psychological and Socio-Medical Aspects of Aids/Hiv 12(4): 377–386.

45.

Rogers, A., Day, J. C., Williams, B., Randall, F., Wood, P., Healy, D., & Bentall, R. P. (1998). The meaning and management of neuroleptic medication: A study of patients with a diagnosis of schizophrenia. Social Science & Medicine, 47(9), 1313–1323.

46.

Ryan

G. W.

Bernard

H. R.

(2003) Techniques to identify themes. Field Methods 15(1): 85–109.

47.

Sandelowski

(2000) Whatever happened to qualitative description? Research in Nursing & Health 23(4): 334–340.

48.

Schreiber

Hartrick

(2002) Keeping it together: How women use the biomedical explanatory model to manage the stigma of depression. Issues in Mental Health Nursing 23(2): 91–105.

49.

Sibitz

Unger

Woppmann

Zidek

Amering

(2011) Stigma resistance in patients with schizophrenia. Schizophrenia Bulletin 37(2): 316–323.

50.

Sidnell

(2010) The ordinary ethics of everyday talk. In: Lambek

(ed.) Ordinary ethics: Anthropology, language, and action, New York, NY: Fordham University Press, pp. 123–119.

51.

Smith

Francis

S.-A.

Rowley

(2000) Group interviews with people taking long-term medication: Comparing the perspectives of people with arthritis, respiratory disease and mental health problems. International Journal of Pharmacy Practice 8(2): 88–96.

52.

Stolk

Minas

Klimidis

(2008) Access to metal health services in Victoria: A focus on ethnic communities, Melbourne, Australia: Victorian Transcultural Psychiatry Unit.

53.

Stuart

Chen

S. P.

Christie

Dobson

Kirsh

Knaak

Whitley

(2014a) Opening minds in Canada: Background and rationale. Canadian Journal of Psychiatry 59(10 Suppl 1): S8–S12.

54.

Stuart

Chen

S. P.

Christie

Dobson

Kirsh

Knaak

Whitley

(2014b) Opening minds in Canada: Targeting change. Canadian Journal of Psychiatry 59(10 Suppl 1): S13–S18.

55.

Thoits

P. A.

Link

B. G.

(2015) Stigma resistance and well-being among people in treatment for psychosis. Society and Mental Health 6(10): 1–20.

56.

Throop

C. J.

(2010) Suffering and Sentiment: Exploring the Vicissitudes of Experience and Pain in Yap, Berkeley: University of California Press.

57.

Van Hook

(1996) Challenges to identifying and treating women with depression in rural primary care. Social Work in Health Care 23(3): 73–92.

58.

Williams

Healy

(2001) Disclosure of minor mental health problems: An exploratory theoretical study. Journal of Advanced Nursing 35(1): 108–116.

59.

Yang

L. H.

Chen

F.-P.

Sia

K. J.

Lam

Ngo

Good

(2014) “What matters most”: A cultural mechanism moderating structural vulnerability and moral experience of mental illness stigma. Social Science & Medicine 103: 84–93.

60.

Yang

L. H.

Kleinman

Link

B. G.

Phelan

J. C.

Lee

Good

(2007) Culture and stigma: Adding moral experience to stigma theory. Social Science & Medicine 64(7): 1524–1535.

61.

Zigon

(2007) Moral breakdown and the ethical demand: A theoretical framework for an anthropology of moralities. Anthropological Theory 7(2): 131–150.

62.

Zigon

(2008) Morality: An anthropological perspective, New York, NY: Berg.