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Record W2782995125 · doi:10.1111/1467-9566.12713

Jarman, M.,Monaghan, L.and Harkin, A.Q. (eds) Barriers and Belonging: Personal Narratives of Disability. Philadelphia: Temple University Press. 2017. 286pp £33 (pbk) £78 (hbk) ISBN 978‐1439913871

2018· article· en· W2782995125 on OpenAlexaboutno aff
Erela Portugaly

Bibliographic record

VenueSociology of Health & Illness · 2018
Typearticle
Languageen
FieldSocial Sciences
TopicDisability Rights and Representation
Canadian institutionsnot available
Fundersnot available
KeywordsNarrativeTempleSociologyArtGerontologyMedia studiesHistoryMedicineAncient historyLiterature

Abstract

fetched live from OpenAlex

The collection Barriers and Belonging contains 37 short essays on intimate experiences with disabilities, written by American and Canadian students. This anthology, edited by Jarman, Monaghan, and Harkin, ‘emerged organically’ (p. 6) from their experience teaching disability studies and their desire to see collections which bring together ‘a range of impairments, material experiences and sociopolitical perspectives’ (p. 4). Some of the essays are written by professional activists or academics who are well versed in self-advocacy and critical disability theory, while others are written by contributors who are new to the field. This mix is both the strength and weakness of the book. It provides the reader with a critical analysis of disability alongside raw descriptions of life with disability/as disabled. While some essays use critical disability theory to understand the contributor's relationship with disability, other narratives pay tribute to the social model of disability, but fail to encapsulate its powerful premise of structural, complex, ubiquitous and unceasing disablism and resistance. In the latter, contributors sometimes fall back to narratives of the supercrip – the individual who overcomes his/her disabling condition through perseverance – or narratives of liberation through individual accommodation. Taken together, the anthology highlights contributors’ attempts to align critical disability theory with their own life experiences. In doing so, the book encapsulates the liberating qualities of the social model of disability and its insufficiency in capturing the most intimate experiences of disability. The book is organised into five parts; each brings together essays around ‘similar sociocultural concerns and perspectives’ (p. 14). While useful as an organisation method, the essays that compose each part are hard to distinguish from those of other parts, as essays throughout the book merge and overlap with one another. Each part opens with the editors’ introduction, as well as ‘questions to frame readings and promote discussion’ (p. 14). Relevant terms are boldfaced to guide reading and contextualise it in disability studies’ literature, and a short list of suggested reading is provided. Here, too, the editors’ choices are interesting. Part 3, for example, points the reader’s attention to ‘social misrecognition, hidden labor, gaps in communication’ and ‘silence’, but does not include ‘cure’ as an important concept. This is especially surprising given that questions regarding cure are a central theme in several essays in this and other parts of the book. The choice to organise the book by themes instead of categories of impairment serves the educational goal of de-medicalising disability and advances the editors’ political goal of ‘engaging across differences’ (p. 17). While the differences the editors point to are those of experience, I believe it is the different ways in which the contributors reflect on their disability that makes the book thought-provoking. Consider, for example, accessibility and autonomy. Popular notions of autonomy as an individual quest are brought up throughout the anthology (for other examples, see Phelp (chapter 1.4), Weingardt (chapter 1.5), Salter (chapter 4.5) and Anderson (chapter 4.6)). Writing about achieving independence, for instance, Phelp concludes ‘I have lived with ADHD all my life … my biggest coping mechanism is developing a schedule and asking those I work with to be very flexible with me’ (p. 45). In this account autonomy is achieved through resilience, individual accommodations, and support from a select few. Though exclusionary social practices (disablism) are present in these narratives, they serve as the background against which individual agency prevails. A very different approach to autonomy is seen in Ritvo's account of her experiences in academia (chapter 1.1). Comparing two academic institutions, Ritvo focuses on the social structures of the institutions and the accessibility they cultivate. In the first, perfection and competition for excellence are most valued, making Ritvo feel ‘less valuable’ then her able-bodied peers. It is only when she moves to a campus ‘that takes pride in differences and diversity’ (p. 29) that she is able to embrace her disability and find independence. This narrative echoes critical disability theory's emphasis on the environment in which one operates, rather than on individual characteristics. By placing both narratives side by side, the editors of the anthology force us to examine the interaction between the individual and the social organization of disability, autonomy, and choice. Chemel's essay (chapter 3.4), in which she laments the politics of blind independence, is exemplary. For her desire to see, Chemel is accused of betraying her peers, yet she struggles to accept the requirements of proud blindness. Finally, she argues, being blind but wanting to see is only a contradiction as long as disability is the only lens through which one is judged. Instead, she asks us to embrace a perspective that is ‘curious about each of our realities… [such as] intentions, hopes and other qualities…so that blame could no longer thrive’ (p. 124). In terms of limitations, the promise made in the book to attend to materiality as it shapes disability is arguably not fulfilled. Intersectionality is dealt with in broad strokes. Rarely discussed, race, gender, class, migration status and so on, appear as an addendum to disability rather than intertwined aspects of one's identity or experiences. Likewise, the book's reflections on developmental and intellectual disabilities are slight. This raises questions regarding the ethics of representation and the editors’ obligation to all types of disabilities. Specifically, the singularity of the woman with Down’s syndrome (the only non-academic and non-activist contributing author) reveals a flaw in the methodology of the book. Reaching beyond current and past students to solicit the ‘perspectives of disabled people’ (p. 8) in an accessible manner (including by various modes of communication) would have enriched the book. Nonetheless, the book's value is in the work it demands of its reader. That is, to tie the essays together. Readers must learn to view differing narratives of disability as complementary, not contradictory. As Calton (chapter 6.2) writes, ‘we need to have a nuanced view of the social construction of disability, not only to move forward intellectually as a discipline but also to make people feel welcome, regardless of what, if any, treatment they seek’ (p. 235). This, I believe, is the difficult task that the book lays out for us.

Fetched live from OpenAlex and de-inverted. Abstracts are not stored in this database: the inverted indexes are 8.6 GB of the frame’s 9.3 GB of text, and the host has 13 GB free.

How this classification was reachedexpand

Full frame distilled prediction

Teacher imitation

Not calibrated prevalence, not ground truth. Human validation pending. Learned from the 10,348 direct Codex labels and 10,348 direct Gemma labels. Candidate is the union of thresholded teacher heads; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels or direct frontier model labels.

metaresearch head score (Codex)0.002
metaresearch head score (Gemma)0.000
Version: codex-gemma-dda1882f352aValidation status: machine_predicted_unvalidated
Candidate categoriesScience and technology studies
Consensus categoriesScience and technology studies
DomainCandidate signal: none · Consensus signal: none
Study designCandidate signal: Qualitative · Consensus signal: Qualitative
GenreCandidate signal: Empirical · Consensus signal: Empirical
Teacher disagreement score0.198
Threshold uncertainty score0.999

Codex and Gemma teacher scores by category

CategoryCodexGemma
Metaresearch0.0020.000
Meta-epidemiology (narrow)0.0000.000
Meta-epidemiology (broad)0.0010.000
Bibliometrics0.0000.000
Science and technology studies0.0020.022
Scholarly communication0.0000.000
Open science0.0000.000
Research integrity0.0000.000
Insufficient payload (model declined to judge)0.0000.000

Machine scores (provisional)

The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.

Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.

Opus teacher head0.040
GPT teacher head0.343
Teacher spread0.303 · how far apart the two teachers sit on this one work
Validation statusscore_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from it

Classification

machine, unvalidated

Machine predicted; both teacher heads agree on what is shown here.

Study designQualitative
Domainnot available
GenreEmpirical

How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".

Quick stats

Citations0
Published2018
Admission routes1
Has abstractyes

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