Abstract
This commentary paper welcomes calls for widening participation amongst ethnic minorities in research that aims to understand well-being. However, we demonstrate how a history of exclusion in the daily routines of communities render such calls limited in their ability to address inclusion fully. The absence of ethnic minorities from spaces and dialogues that define what constitutes good well-being is highlighted. We use life-courses that align with Western norms as an example to develop our arguments. Overall, exclusion is rooted in colonial histories and the discrimination experienced by ethnic minorities during day-to-day, routine living. Additionally, relational ontologies of well-being are overwhelmed by individualised constructs. We outline how the suppression of marginalised values in everyday spaces and activities has limited meaning-making in relation to well-being amongst ethnic minority individuals and groups. We characterise this marginalisation as an epistemic injustice in defining well-being. In our conclusions, we call for dialogues and developments in critical race theory (CRT) to be considered in research commissioning processes. Spaces and dialogues that are owned and shaped by ethnic minorities should be supported before we can widen participation in well-being research meaningfully. Values that are practised and developed in such spaces can then contribute to how communities define well-being and the appropriate ways in which it can be studied. It should be acknowledged that we use the term ethnic minority throughout this paper for brevity. The diverse experiences and perspectives that this term covers should be engaged with when considering the recommendations that we make.
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Introduction
Academics, from a range of disciplines, have increasingly tried to understand diverse perspectives on what constitutes positive well-being for individuals and communities. Consequently, there is an ever-growing body of research that acknowledges the significance of subjectivity in how individuals understand and shape their well-being and that of others (Atkinson et al., 2019). Cloutier et al. (2019) document how individuals relate to each other and adopt flexible subject positions to shape key values, practices and perspectives, which give well-being meaning. However, community interpretations of well-being are often situated within culturally apposite community worldviews (Bentley-Brymer et al., 2020). Thus, recognition that well-being should be contextualised by culture has led to calls for research that includes the participation of ethnic minority (EM) groups to augment findings that may simply reflect the experiences of dominant socio-demographic groups (UK Government, 2022; UKRI, 2022). However, such calls overlook the complexities that are associated with being an EM. EM groups have varied histories and their relationships with the institutions that are now calling for their participation can differ from context-to-context. Influences on this variability include: geo-political histories, current political contexts and how power is distributed in societies (Brown, 1989; Garbaye, 2002).
This paper argues how calls for participation by an externally defined nominal group falls short of meaningful inclusion in research. Our main critique aims to raise awareness around the heterogeneity of EM experiences and how specific histories of marginalisation need to be acknowledged in efforts to establish inclusion. Although we use the term EMs throughout this paper for brevity, we recognise highly differentiated experiences and meanings amongst individuals who identify as an being EM (DaCosta et al., 2021). First, we highlight how calls for widening participation largely fail to engage with relational conceptions of well-being that challenge Western individualist ontologies. We recognise the crucial role of day-to-day community life and relationships in constructing subjectivities of well-being through (inter-) personal and material encounters in everyday spaces (Giddens, 1986; Graham & Shier, 2010). Second, we discuss the risk of deepening existing epistemic injustices through facilitating tokenistic participation for EMs in research. Calls for increased EM participation typically use belonging to a nominal social group as a defining quality; framing EMs as unknown others. We suggest such calls are unlikely to create the affordances required for minorities – whose experiences are shaped by intersecting social inequalities linked but not limited to ethnicity alone – to reflect on what good well-being means. Although there have been efforts to promote inclusion through decolonised spaces (Fleuret & Atkinson, 2007), such approaches seem to be overlooked by research commissioning. To conclude, we share considerations to help embed diverse conceptions of well-being in research commissioning.
Living and Being Well
Two core dimensions of well-being are often foregrounded in research: hedonia and eudaimonia. Whilst recognising the vast body of scholarship in this area, broadly, hedonic well-being relates to experiences of pleasure, while eudaimonic well-being concerns purpose and achievement (Deci & Ryan, 2006). Physiological health, including a person’s feelings about their health, acts as another influence on their well-being (Steptoe et al., 2015). Clinical understandings of poor health do not always correspond with how someone feels about their well-being. For example, individuals with a terminal illness can feel positive about their well-being if they feel valued and have opportunities to sustain and/or construct meaningful routines (Wrubel et al., 2009).
Broadly, the contexts that support hedonic and eudaimonic experiences vary and are shaped by how individuals connect with a community: “our capacity to realise our potential is deeply affected by collective and social relationships. The wellbeing of communities is, therefore, an essential precondition for the wellbeing of individuals” (Wiseman & Brasher, 2008, p. 355). Opportunities to perform valued activities and develop meaningful community relationships are dynamic through the life-course (MacMillan, 2005). Therefore, we use the life-course as an illustrative example of how marginalised values and living well can be overwhelmed by Western norms in everyday spaces and practices. Marginalised values often struggle to co-exist within Western societies that compartmentalise the life-course into someone’s formative years (pre-compulsory education); compulsory education; the pursuit of further education and/or entry into work; navigation through a working life; retirement from a working life and progression to old age (MacMillan, 2005). This summative list is starkly linear, and real-life experiences of life-stages can vary considerably from person-to-person (Elder et al., 2003). Yet, these stages are often used to position people in communities – and to measure one’s well-being at each life-stage – regardless of whether or not an individual or community recognises or experiences such life-course categorisations (Michalski et al., 2020).
In Western cultures, the values and meanings that define and shape life-courses have their foundations rooted in colonial contexts where alternative worldviews – particularly those of EMs – are often elided. Repressive colonial practices affirm normative assumptions that govern contemporary meanings of well-being (MacDonald & Steenbeek, 2015). To explain this process and advance our argument, two axiomatic assertions need acknowledgement. First, the exclusion and discrimination of EM groups revolve around histories of being colonised (Mogoka et al., 2021), and second, the stigmatisation of differences in physical characteristics and cultural practices compared to dominant norms (Grady et al., 2012). Hence, being an EM is often configured as follows: (i) by dominant outsiders, whereby minorities are supressed by histories of being positioned as a subaltern, homogenous social group; and (ii) from within, through often conflicting and irreconcilable life experiences against dominant norms. These differences can manifest in a range of socio-cultural contexts. For example, disparities between EM life-course values predicated on cultures of intergenerational care (intangible) and dominant Western values focused on material wealth and personal freedoms (normative) (Sue & Sue, 1999). Subsequently, values of EMs are often absent from prevailing discourses on well-being and life-course (Pivodic et al., 2014). This lacuna needs addressing.
Reimagining life-courses – for example, those that seek the good life through being part of an off-grid, self-sustaining community instead of pursuing material wealth – requires certain social freedoms and the means to manifest those freedoms in a community. Here, freedom involves having the confidence, knowledge, and economic power to live out an alternative lifestyle (Rosen, 2008). Further, in the context of this paper, we argue that individual freedoms shape how people respond to the challenges presented by ill-health, and we pose the question to what extent have such freedoms been afforded to EMs? A corollary concept to this consideration is how we define the life-course, as the risk of ill-health increases with age. Reflexive reconsiderations of what is meaningful, alongside genuine support from community peers, can facilitate positive well-being experiences during serious illness (Onsworth & Nash, 2015). Additionally, support that is accessible in community settings can be a catalyst for remaking positive meanings around well-being (Ownsworth & Nash, 2015). Specifically, personalised relationships with carers and feeling comfortable when receiving support contributes to improved well-being during ill-health (Batalden et al., 2016; Strandås & Bondas, 2017). Next, we explore individual and relational ontologies.
From Individual to Relational Ontologies of Well-Being
Scholarship on hedonia and eudaimonia tends to frame well-being as an individual quality, with “little allowance for the diversity of human lifeways” (Smith and Reid, 2017, p. 813) and limited engagement with relational conceptions that explore how well-being arises “from the common life, the shared enterprise of living in community – in whatever sense – with others” (White, 2017, p.128). As Smith and Reid (2017) document, indigenous populations (who are EMs in many political contexts) construct well-being differently to those in Western societies. Specifically, well-being is seen as a collective construct, rather than individual (Smith & Reid, 2017). Therefore, the way that knowledge is generated, shared and utilised needs to be considered when EM participation in research is being encouraged. In this sense, well-being can be understood in a more just manner if research around well-being is co-produced with EMs. Importantly, co-production should not be limited to making sense of and/or assessing knowledges. Research methods that are co-designed with, for example, indigenous populations, accommodate meaningful participation and are sensitive to cultural constructs of well-being. Zino et al. (2021)’s toolkit that used valued Maori symbols and artefacts to induce discussions around well-being and belonging is a prime example of how inclusion can be established at the methodological design (co-design) stage of research. This point is expanded upon in the next section, which concerns epistemic justice and injustice in well-being research.
Overall, cultures that promote being part of a collective unit, beyond immediate family and/or friendship groups, tend to be studied from the perspective of how individuals feel in themselves and how those senses contribute to collective well-being (Finlay et al., 2021). Such approaches elide a key aspect of a community’s subjectivities: emergence. Emergence is the quality expressed by a unit that cannot be equated to a sum or product of the collective’s individual constituents (Newman, 1996). This creates a challenge for future research commissioning on well-being. Relational understandings of well-being amongst EMs require giving attention to how individuals feel they belong or do not belong in communities. Such work could attend to the ways in which day-to-day lives, routines and encounters with others are reflexively constructed through both self and group dynamics to produce diverse well-being meanings and values. As such, well-being may be understood as a holistic quality of communities that is emergent. Here, holism should involve historically excluded individuals and groups in shaping the conditions that underpin defining and redefining well-being.
To summarise, the well-being priorities and values of EM groups can deviate from dominant norms. Subsequently, meanings of well-being differ from normative expectations and life-courses revolve around alternative priorities. These differences are often a key part of why exclusion and inequalities occur for EMs in the first place. Below, we discuss this point below in the context of epistemic justice.
Epistemic (In)justice in Well-Being Research
Ambitions to widen participation in well-being research are driving growing calls to improve the quantity and efficacy of data from EM groups (UKRI, 2022). Whilst increased research participation could lead to better data and the promise of more inclusive policies, we suggest that voluminous data generation alone will be insufficient to embed the knowledges and perspectives of EM groups in research. Primarily, we must respect EM groups and individuals as integral epistemic agents with regards to well-being. Indeed, the lack of genuine opportunities for minoritized individuals and groups to shape collective processes of knowledge production and meaning-making around well-being reflects a form of hermeneutical injustice (Fricker, 2007). When aspirations to widen participation are not accompanied by a willingness to reconsider the ways in which well-being is understood, there is a risk of epistemic exploitation that “maintains structures of oppression by centering the needs and desires of dominant groups and exploiting the emotional and cognitive labour or members of marginalised groups” (Berenstain, 2016, p. 570). Here, a pertinent example is how care-giving is undervalued in the United Kingdom’s economic systems (and in other Western economies). Paid carers are often from EM backgrounds and receive low wages (Hussein, 2017). As Hussein (2017) outlines, many paid carers are motivated to provide care due to ethical and moral reasons, and by the direct influence that they can have on improving someone else’s quality of life. However, their low pay status means that they can encounter day-to-day issues, such as those associated with affording living costs. These disparities must be acknowledged and addressed before any participation and inclusion can be established meaningfully.
To move this argument forward we suggest that we need to avoid the pitfalls of early feminist attempts at inclusive research which add women and stir. These studies relied upon an “untheorized duality between women and men” (McDowell, 1991, p. 123) in which the social basis of unequal power was overlooked in the construction of gender identities. Hence, in our view, the simple promulgation for increased participation of EMs in well-being research remains an untheorized agenda. The push towards this type of inclusion runs the risk of adding EM data and stirring, without challenging whether those data are giving us real insight into the meanings of living and being well as an EM. Again, this is a familiar refrain for feminist scholars, as demonstrated in Criado-Pérez’s popular book Invisible Women (2019), which highlights how data which drives resource allocation, policy and decision-making largely fails to consider the nuances of gendered subject positions.
Thus, our understanding of exclusion and inclusion in well-being research needs to go beyond a naïve shift that promotes and facilitates widened participation within existing societal structures. As argued by Ahmed(2017,p.263): "equality, diversity: they all become gifts for which we are supposed to be grateful; they become compensatory. We are not grateful when a system is extended to include us when that system is predicated on inequality and violence."
An exploration of what constitutes inclusive practices can help reframe how research acknowledges, understands and acts on the reasons as to why certain groups remain marginalised. For the promotion of meaningful inclusion, practices should move from just facilitating participation to empowering self-defined groups and individuals to shape their communities (Dovidio et al., 2016). However, institutionalised racism presents a fundamental barrier to addressing this transformation (Miller, 2021). The organisation of society, and so communities, around dominant norms of defining success and life-course limit EMs in expressing their alternative worldviews. Consequently, EM worldviews remain marginalised and their success, including how they contribute to a community, is defined through the dominant norms that marginalise them in the first place. Therefore, the means by which well-being can be better understood amongst EM groups lies in challenging extant and often externalised understandings of diverse groups. In this short paper, we do not have space to cover critical race theory (CRT) in detail. Nonetheless, CRT must be acknowledged and used to shape research commissioning if the disparities between widely accepted definitions of well-being and those that are constructed by EM perspectives are to be addressed. In short, CRT documents how a history of exclusion has led to multi-layered inequalities, which continue to grow when EMs are engaged and viewed through existing norms (Ray et al., 2017).
We need to start from the point of recognising and respecting EMs as epistemic agents who form spaces, practices and dialogues in communities that deviate from dominant worldviews (Rogers, 2021; Walker & Martinez-Vargas, 2020). This type of deeper-rooted inclusion – alongside a willingness amongst researchers and research commissioners to reconfigure the core theorisation, design and conduct of well-being scholarship – can help in creating and shaping institutions, or other novel societal structures, that address epistemic injustice.
Conclusions
This paper argues that existing understandings of well-being – and efforts to widen participation in the conduct of well-being research – require re-conceptualisation when considering EM experiences. To inform this re-conceptualisation, we have concentrated on how community well-being has emergent properties and is situated within extant colonial discourses and inter-community group dynamics. Hence, there is a need to empower minorities as respected epistemic agents to critique and contribute to the assumptions that drive research, including researched dialogues and spaces in communities. Existing calls to include minority individuals and groups in research projects are a superficial solution to the pressing need to re-theorise and understand diverse experiences of well-being. Currently, research commissioning remains attached to the institutions and standpoints that align with dominant worldviews (Mogaka et al., 2021).
The needs highlighted above link to decolonisation, wherein minority cultures can have equal standing in initiating community-level action and dialogue to reform society. Here, we must acknowledge CRT, which documents how and why certain groups and individuals have been exploited (Yosso, 2005). Thus, debates and developments around CRT need to shape research commissioning and the ways in which meanings around well-being are established in communities. Without active engagement in CRT, widened research participation that is driven numerically and based on research being conducted by existing institutions can only achieve inclusion in a simplistic manner. Meaningful inclusion needs spaces in communities for minority individuals and groups to own and shape (Fleuret & Atkinson, 2007; George et al., 2019). Through these essentially decolonised, inclusionary spaces, new two-way dialogues with the institutions that dictate research agendas (e.g., research councils) can be initiated on the terms of EMs. Hence, institutions need to engage with decolonised spaces to define how and for whom research is commissioned. Transparency over how dialogues, initiated by both the institutions and the decolonised voices, feed into research commissioning, design and practice will be important for trust (Haarmans et al., 2022). Benefits of building such trust include: (i) creating dialogue-led inclusion at an institutional level and (ii) co-developing understandings of well-being that respect alternative worldviews and life-courses.
Research commissioning must support freedoms for minority individuals and groups in communities to practise and develop values and meanings around well-being before meaningful research participation can be established. As indicated by this paper, centuries of meaning-making and opportunity for equitable dialogue has been subjugated by colonialism and marginalisation. Foundational steps for inclusion should concentrate on supporting freedom for minorities to reflect on well-being in today’s world. Calls for widened participation would then carry more weight.
Finally, on behalf of all authors, the corresponding author states that there is no conflict of interest associated with this paper.
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Esmene, S., Leyshon, M. & Leyshon, C. Ethnic Minority Inclusion in Well-Being Research: Beyond Widening Participation. Int. Journal of Com. WB (2024). https://doi.org/10.1007/s42413-024-00221-4
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DOI: https://doi.org/10.1007/s42413-024-00221-4