Author: Heath Pillen
Pillen, Heath, 2021 A critical pedagogy for understanding diabetes-related stigma, Flinders University, College of Medicine and Public Health
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Patient advocacy groups and academics within the humanities and social sciences have a long history of challenging the way that chronically ill, disabled, and stigmatised groups are represented. These challenges largely relate to matters of identity, whereby dominant knowledges about chronically ill and/or disabled persons produce forms of identity thinking that function to reduce the status of chronically ill and/or disabled persons and legitimise practices that impinge on their lives. This phenomenon is particularly true for a proportion of persons living with type 2 diabetes (PWD), who experience feelings of shame or guilt for their diabetes diagnosis and/or its progression, an observation that researchers have attempted to explain by drawing upon the stigma concept. However, the largely individualised understandings of diabetes-related stigma found within this literature are largely out-of-step with the critical or structural turn in stigma research, which focuses attention on the way that stigmatisation relates to broader social relations of power and control. Although stigma researchers and those involved in stigma-reduction work are exhorted to think about health-related stigma in more socially critical ways, there is limited indication of how this shift in understanding might be practically achieved. This doctoral research has addressed this limitation by taking an educational program informed by critical pedagogy and using a case study methodology to identify: what social and pedagogical processes facilitate or constrain the critique of stigmatised identities; what constitutes a critical understanding of diabetes-related stigma; and where critical forms of education might be located within existing public health policy and practice. Critical pedagogy is useful here because of its role in developing literacies that might be used to disrupt reified thinking about members of stigmatised groups, thus allowing for alternative discourses and representations of stigmatised groups to emerge.
This research involved two main research activities. The larger first component involved conducting a five-week education program with two groups of PWD (n = 8) who experienced a perceived or self-stigma in relation to their diabetes. Using a qualitative case study methodology, longitudinal interviews with research participants were analysed to identify changes in representations of persons with diabetes and stigmatising events. These interviews provided insight into how discursive regimes were used by participants to construct, legitimise, resist, or transform stigmatised social identities, and provided insight into the way that participants implicated certain processes or structures in the production of diabetes-related stigma. By way of case comparison, it was then possible to identify processes of learning that contributed to these discursive changes. The smaller second component of this doctoral research involved a facilitated deliberation on earlier research findings with staff and board members (n = 25) from a state-wide Australian diabetes organisation. The purpose of this research was to locate critical pedagogy within a current landscape of public health, patient advocacy, and stigma-reduction work, with the intention of providing guidance on how to bring this pedagogical approach from the margins into the mainstream of stigma-reduction education.
In performing this research, this doctoral thesis has advanced knowledge about diabetes-related stigma and the role of critical pedagogy within stigma-reduction work in several important ways. Firstly, this research has established an understanding of what processes of learning are involved in supporting an epistemic challenge to stigmatising representations of identity. Put simply, the research findings suggest that learners must engage with questions of: who exactly is stigmatised; whether the application of stigmatising concepts is fair; what dominant knowledges are used to construct stigmatised groups and how these knowledges are applied; and what alternative concepts might be used for representing PWD? Secondly, this research has resulted in the development of a critical theory of diabetes-related stigma that draws attention to the way that the government of risky bodies establishes conditions conducive to a process of othering, whereby moral concepts are used to constitute the stigmatised identities of tragic-disabled, irresponsible, and obese PWD. It is within this context of risk that medicalised understandings of PWD and ideological assumptions about (responsible) bio-citizenship are drawn upon as resources for constructing and legitimising stigmatised identities as participants sought to manage temporal uncertainty and overcome the nature of their vulnerable bodies. In doing so, this doctoral research has been able to relate the individual, ideological, and structural dimensions of diabetes-related stigma, extending the largely individual-level analysis that has dominated existing understandings of diabetes-related stigma. Thirdly, this research has found that democratic fora relevant to diabetes prevention and care, contained within activities of person/patient-centred care, service co-design, and media advocacy, offer sites where those with diabetes can re-define the concepts used to construct identity. Specifically, representing PWD as socially-embedded agents offers a defence against reified thinking that seeks to give moral meaning to physical attributes of disability-disfiguration and obesity. Representing PWD as such may offer a standpoint from which to critique normative aspects of diabetes prevention and care. However, as this research has shown, critical forms of education should complement these democratic fora or otherwise risk PWD further contributing to the othering of certain sub-groups of PWD, potentially re-distributing feelings of shame and guilt away from ‘normal’ PWD and towards the ‘more deserving’ disabled, irresponsible, and obese sub-groups of PWD.
These findings have important implications for how public health practitioners and stigma researchers might go about their work. In relation to diabetes-related stigma, practitioners and researchers should focus their attention on the way that discourses of medicalisation and bio-citizenship are deployed within surveillance and educational activities, and how these discourses function to form implicit categories from which to construct stigmatised identities. In relation to health-related stigma more broadly, practitioners can use the pedagogical approach described in this research as a more democratic and considered way of identifying dominant knowledges used to represent stigmatised groups in certain ways. However, further research is required to test this pedagogical approach in a more refined form and within naturalistic public health settings.
Keywords: Critical pedagogy, diabetes, stigma, qualitative, discourse analysis
Subject: Public Health thesis
Thesis type: Doctor of Philosophy
Completed: 2021
School: College of Medicine and Public Health
Supervisor: Paul Ward