Chronic illness and the ideology of the individual: towards a critique of the concept of agency

Diasio, Nicoletta

doi:10.3280/ses2019-003004

Cited by 5 publications

(2 citation statements)

References 7 publications

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“…Firstly, it reinforces the effects of the naturalization of age and the difficulty of thinking this dimension as a social category with its effects on the people being categorized (Hacking, 1999 ). The government of time and of the body's instability is a central dimension of a biopolitical order, but it is a “soft” biopolitics (Diasio, 2019a ), all the more efficient because it is so obvious. Secondly, the concern with defining more and more precisely what is “age-appropriate” opens up areas of uncertainty (Kelle, 2010 ).…”

Section: The Normative Power Of Physical Developmentmentioning

confidence: 99%

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Illegitimate bodies? Turner syndrome and the silent interplay of age, gender, and generational positions

Diasio

2023

Front. Sociol.

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This paper focuses on the strength of social norms that define the right development of the body in time. It also analyzes how the social positions of age, gender and generation intertwine in the definition of such a legitimate body. The starting point is anthropological research carried out in France between 2018 and 2020 among girls and women affected by Turner syndrome, a rare genetic condition causing small stature, ovarian insufficiency, a delay or absence of puberty, and infertility. We first explore how measuring the body has become central in the social construction of the concept of age-appropriateness. We then present four women' narratives, which express various forms of desynchronization: the gap between physical appearance, chronological age and age status; the cleft between the physical development induced by hormone therapy and being in a particular stage in life; the difference between chronological and reproductive age; and lastly, the trouble in a generational position related to infertility. For women suffering from this genetic condition, the gap between bodies, time and social statuses associated with age, gender and generation, may engender a feeling of “being out of place.” The alignment of body and time is then one of the bastions of essentialization and naturalization. Finally, we stress the complex interplay of bodily and social markers of age and gender, and their role in social relations as both a resource and a constraint. Thus, while the syndrome may cause distress and sometimes a lack of legitimacy, it also leads to a critical re-examination of hegemonic models of womanhood and their intersection with age positions.

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Section: The Normative Power Of Physical Developmentmentioning

confidence: 99%

“… 11 However, we feel it is important not to idealize this combative stance, which we found in other experiences of chronic illness. The ideal of reflexivity and self-improvement may trap the patient in a model that he or she cannot achieve and bring new forms of determinism and disempowerment (Diasio, 2019a ). …”

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Illegitimate bodies? Turner syndrome and the silent interplay of age, gender, and generational positions

Diasio

2023

Front. Sociol.

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Les sœurs et frères de jeunes malades chroniques : supports rapprochés, supports par effacement et rivalités

Vinel¹

2023

Agora Débats/Jeunesses

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La place des frères et sœurs dans les soins prodigués à des adolescent·e·s ou des jeunes adultes malades chroniques reste peu connue. À partir d’une enquête qualitative auprès de 91 jeunes âgés de 11 à 22 ans, atteints de diabète de type 1 ou d’asthme, l’article met au jour trois modalités de relations entre frères et sœurs en mobilisant la notion de « support ». Des sœurs peuvent être des supports rapprochés, alors que des germain·e·s, surtout des cadet·te·s, peuvent être disqualifié·e·s en tant que soutiens. En définitive, la majorité des frères et sœurs sont peu visibles, mais ils se révèlent être des supports par effacement. Ces variations sont analysées du point de vue du genre, du rang dans la fratrie et des normes contradictoires qui gouvernent les relations adelphiques contemporaines.

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Enfants acteurs, enfants agis

Vinel¹,

Zaltron²

2020

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Chronic illness and the ideology of the individual: towards a critique of the concept of agency

Cited by 5 publications

References 7 publications

Illegitimate bodies? Turner syndrome and the silent interplay of age, gender, and generational positions

Illegitimate bodies? Turner syndrome and the silent interplay of age, gender, and generational positions

Les sœurs et frères de jeunes malades chroniques : supports rapprochés, supports par effacement et rivalités

Enfants acteurs, enfants agis

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