David Bolt (ed.). (2021). Metanarratives of Disability: Culture, Assumed Authority, and the Normative Social Order. Oxon: Routledge, UK: ISBN: 9780367523190

Nina Worthington, Ph.D.
Principal Research Fellow, Sidney De Haan Research Centre for Arts and Health, Canterbury Christ Church University.

nina [dot] worthington [at] canterbury [dot] ac [dot] uk

As researcher in arts and health with a focus on theatre and disability, mother of disabled children, and as someone currently self-defining as non-disabled, the autocritical disability theory contained in David Bolt’s Metanarratives of Disability is welcomed and vital. Its content effectively unravels ableist viewpoints and assumed authority, assisting readers like me in moving towards new understanding of interdisciplinary, condition-specific metanarratives of disability and their real-life impact on disabled people.

Metanarratives of Disability opens discussion and understandings around cultural, theoretical, and lived experience perspectives of disability. The critical concepts of assumed authority and the normative social order are introduced and investigated alongside multiple metanarratives of disability; that is the dominant social meanings attributed to specific impairments or conditions. Intimate experiential examples of how these pervade real-life situations are shared by the authors, giving deeper meaning to why critical and intrapersonal engagement with these concepts matters. A wealth of critical conversations has been supported by Bolt’s writing on metanarratives of disability. This volume, however, expands its scope beyond its British roots to a broader international perspective and enlarges the range of conditions that are recognised as aspects of disability experience. The authors represent scholars across a range of disciplines including Disability studies, English literature, Psychology, Theology, Medicine, and Healthcare. What makes this book both unique and valuable is that its contributors are people with diverse expertise and research interest in the conditions examined in each chapter as well as intimate or direct lived experience.

The book comprises 15 chapters of textual analysis and reflections on the lived reality of disability arranged across three parts with a prologue and epilogue. The introduction of autocritical discourse analysis in each chapter combines critical discourse analysis with autoethnography; ‘authors recognize their experiences at the very epistemological level of their methodology, the aim being to herald formal advancement from critical theory and critical disability studies to autocritical disability theory’ (xviii). Bolt’s prologue opens by calling out the normative social order as ‘divisive and profound’; setting out how ‘normative arrogance’ and ‘assumed authority’ are constantly navigated by disabled people. He describes how ‘assumed authority is underpinned by a displacement of personal narratives in favour of overarching metanarratives of disability’, which are largely defined by non-disabled people. All chapters provide a helpful structure of preliminary discussion, methodological and analytical discussions, and conclusion.

Part 1, chapters 1-3, examines ‘International developments of the foundational concept’, expanding Bolt’s earlier work (2014); metanarratives of blindness are considered in the broader cultural contexts of North America, the Global South, and India. Part 2, ‘Beyond normative minds and bodies’ deepens understanding of condition-specific metanarratives that are explicitly critiqued through lived-experience perspectives; chapters 4-9 give attention to mental illness, obsessive compulsive disorder (OCD), learning disability, autism, Down syndrome, and dwarfism. Part 3 opens metanarrative enquiry to chronic conditions that are increasingly recognised in progressive disability studies and Bolt argues ‘must also be recognised as aspects of the disability experience’ (xviii); chapters 10-15 shift the volume’s focus to chronic pain, diabetes, cancer, HIV and AIDS, sarcoidosis, and arthritis.

As is common in Disability studies, cultural representations of disability in film, TV, and media frame each chapter discussion; critical analysis also extends to webcomics, archival material, and crucial personal narrative. Authors such as Healey and Michalko take a familiar approach, comparing dramatic representations, ‘A tale of two blindnesses’, in the film Scent of a Women and the play Weights by Lynn Manning (4). As critical analysis in chapter 1 and all chapters is coupled with autoethnography, these authors move to reflect on how loss as a metanarrative of blindness ‘feels’ and how ‘ocularcentrism and ocularnormativity are inescapable’ in their own lives (14). This methodological approach is weighted differently across chapters. In chapter 2, Padilla’s starting point is a ‘first person autobiographical tone’ (18). This is applied to ‘reading of the reifying representationalism and discursive symbolism’ in his own ‘1980s nickname […] alluding to a television series’ (16). Padilla analyses personal experiences of higher education alongside ‘myths and ceremonies’ in the Global South context relating to the metanarrative of blindness (18). Likewise in chapter 3, Karah’s entry point is an ‘autoethnographic dip into collective memories of our blind school’ (33). Critical analysis centres on the author’s memories of how a ‘special education aspect of the metanarrative of blindness’ and ‘assumed authority’ among ‘special educators’ in India promoted ‘learnt suspicion of the social sciences’ (39). Personal stories including lived experience of medical diagnosis, healthcare, motherhood, employment, and social encounters both frame and illuminate how condition-specific metanarratives shape the lives of disabled people and in this case their disciplinary choices.

Collaborative contributions parallel autoethnographic analyses from authors with the same condition or impairment and offer diverse perspectives as in chapter 4; this draws on Thompson’s personal stories of mental illness and Martyn’s perspective as a nurse, academic, and mother to interpret metanarratives encountered in healthcare settings. Metanarratives of shame, judgement, infantilisation, unworthiness, and invisibility that they associate with mental illness reverberate across chapters. Assumed authority among health professionals is a cause for shame experienced by Thompson and Martyn. Similarly, in chapter 11, as Walker and Frazer challenge metanarratives of diabetes, the assumption that people with diabetes ‘do not take care of themselves’ and are ‘a drain on the health system’, they explain, ‘we have felt the blame, shame, and disappointment that live and breathe life into this metanarrative’ (157-8). Discussing metanarratives of chronic pain in chapter 10, notions of judgement relating to cure are also apparent as Kohfeldt and Mather pinpoint assumptions of ‘the chronically pained person as lazy’, ‘the cause of your own suffering’ (147). As two ‘chronically pained individuals’, these writers thematically analyse webcomics created ‘by disabled women who experience pain and depression’ (142). Noting overlap with their own experiences, they challenge the metanarrative of ‘the chronically pained individual as culpable, duplicitous, and miserable’ (143).

Misunderstanding, or normative arrogance, and trivialisation of conditions is also a common interpretation of textual and phenomenological analysis in this book. In chapter 5 Angela J. Kim traces lived experiences with OCD alongside stereotypes played for comedy in the media. Kim examines the metanarrative of OCD as a ‘good mental disability’, equating it with safety or ‘a quirk of cleanliness’ (65), suggesting this is ‘a disastrous misrepresentation’ as ‘the disability is characterised by debilitating anxiety’. Misrepresentation is identified as cause of inappropriate accessibility (145), discrimination by medical professionals (96), and, in the cases of chapters 7-9, normative reductionism to the point of invisibility and animalisation. Notions of animality are considered in detail by Davies through literary depictions and family experiences of Downs syndrome in chapter 8. Like Davies, Barden and Waldon do not claim experiential knowledge of disability; instead, chapter 6 takes an ‘objective view’ based on ‘a series of workshops designed to enable ‘learning-disabled co-researchers’ to interpret archive material about the life of Antonia Grandoni, a case history in William Ireland’s (1877) Idiocy and Imbecility. Historic metanarratives of people with learning disabilities as ‘vulnerable’(82), ‘barely human’ (83), and ‘requiring control’ (87), are a springboard for discussing where these tropes still operate today; co-researchers describe personal experiences of being denied choice to ‘nap in the afternoon’, what they wear, or ‘romantic relationships’ (89-90). Yet, there is also optimism, generational shifts in parental attitudes towards relationships with younger co-researchers reporting more freedoms and choice (91).

Chapter 7 reiterates how normative arrogance and assumed authority translates as blame for not partaking of a cure, invisibility, and unworthiness in healthcare settings. Loftis examines the origins of metanarratives of autism in three cultural texts paralleled with real-life assumptions of her relationships and capabilities. The author describes becoming ‘accustomed to ableist discrimination […through] attempts to access medical care’ (97); pregnant and age 33, a nurse asks her husband if she should be classified as a child or adult on hospital paperwork (96). She outlines how ‘such attitudes are informed by a metanarrative of autism as an ‘inherently child-like state. Autistic adults are imagined as too immature for romantic relationships’ (101). Chapter 9 refers to similar assumptions, drawing on Bolt’s concept of the ‘forbidden relationship (2019)’. As ‘a woman with dwarfism’, Pritchard scrutinises how ‘the construction of dwarfism as a subhuman figure of fun, which is often infantilised, influences notions of asexuality’ (131). Her analysis exposes a metanarrative bolstered by heightism, by ‘heightist terminology employed by normates’, and media misrepresentation leading to people with dwarfism being ‘ridiculed and mocked’ in real life (124).

The fact that contributions in Part 3 of this book have already been mentioned as consistent with discourse on ‘bodies and minds typically rendered beyond the normative divide’ in Part 2 support Bolt’s assertion that chronic conditions must be considered as aspects of the disability experience (xviii). In Tyrrells’ discussion of past and present metanarratives of HIV and AIDS in chapter 13, it also argued that diverse voices are powerful in critiquing metanarratives of disability and that ‘epistemic privilege’ should not be assumed by individuals or one community (186). Relating her experiences as a bereaved mother to concepts of grief theory and labels including ‘complicated grief’, ‘PTSD’, ‘depression’ and ‘anxiety’, Martin clearly positions her lived experience in the realm of disability; in chapter 12 she shares difficulty accessing services and mental health support, and the personal cost of responding to ‘battle language’, the metanarrative of cancer (169). In chapter 15 Bolt examines how cultural representations of arthritis as an ‘aged, twisted, painful, moaning figure’ (213) inform a metanarrative dominated by age and is the cause for people with arthritis to disassociate with disability (224). Benefits of progressive disability studies that transcend ‘a downplay of pain and suffering’ are further asserted by Leigh in chapter 14 (201). Observing very limited cultural representations of sarcoidosis, this author illustrates how people with ‘invisible conditions, chronic pain, and other “non-traditional” disabilities have been left wondering where and how we fit in society at all’. Barriers to access are acknowledged as reaching ‘far into the identity politics of disability’ (210), with ‘the normate’s or fellow disabled person’s expectations alike’ creating additional disability (200).

This important addition to the Autocritical Disability Studies series represents continual advancement of the field and recognition of its interdisciplinary value. As a reader, I can agree with Healey and Michalko’s comment that ‘There is something exhilarating about two blind authors writing together and reaching up with the imagination of blindness to explore new possibilities’ (14). The work of all these authors demonstrates the benefits of autoethnography as a valid account of the impact of metanarratives of disability on society; first-hand accounts offer a necessary picture of how different strands of the metanarrative of disability play out in real-life. This book privileges work by disabled people in scholarship and responds to what Barden and Waldon assert is the ‘real challenge’, ‘to shift attitudes outside disability circles and networks, further than disability related communities and in culture more broadly’ (91). As non-disabled person, a normate, I risk ‘accrediting myself ‘merely for having heard’ about the conditions in this book (66) and, as Pritchard notes, ‘outsiders can only ever be onlookers’ (125). Still, this book has somehow moved me towards disability, alerting me to my own assumed authority, normative arrogance, ableist attitudes and language. I am grateful to series editor, David Bolt, and the authors for their openness and capacity to educate, not just to extend knowledge or research expertise, but to equip individuals across communities to proactively resist denigrating metanarratives of disability and to do interdependence well. Metanarratives of Disability will benefit academics, students, and practitioners engaging with disability across progressive fields and sectors. Whether self-defining as disabled or not, this volume is a valuable route to extending personal understanding of disability theory, knowledge, critique, and lived experience; it is accessible and relevant across all disciplines.