Out of Sync? Rare Genetic Disease and the Chronopolitics of Care
Bibliographic Data
| ID | 5659660 |
|---|---|
| Authors | Catherine Coveney (0000-0002-1393-8087, Criminology, Sociology and Social Policy Loughborough University Loughborough UK, corresponding author) |
| Year | 2025 |
| Volume | 47 |
| Issue | 8 |
| Pages | e70106-e70106 |
| Publication date | 2025-11-01 |
| Peer Reviewed | Yes |
| Open Access | Yes |
| Type | ARTICLE |
| Venue | Sociology of Health & Illness (JOURNAL) |
| Journal identifiers | ISSN: 0141-9889 • E-ISSN: 1467-9566 |
| Publisher | Wiley (PUBLISHER • GB) |
| DOI | 10.1111/1467-9566.70106 |
| PMID | 41088793 |
| OpenAlex | W4415215662 |
| Language | EN |
| References cited | 50 |
Drawing on the experiences of parents of children diagnosed with Noonan Syndrome, I examine how living in and between multiple temporalities of care impacts parents' sense of temporal autonomy and social inclusion. Employing the concept of 'crip time', I connect everyday choreographies of care with their temporal politics to analyse the chronopolitics of care in the context of rare genetic disease, crafting theoretical synergies between the sociology of health and illness, critical disabilities studies and the sociology of temporality. I argue that care time is crip time, requiring parents to juggle competing temporal rhythms that deviate from the chrononormative time order. Parents describe good care as making time and giving time to be with their child to meet their embodied care needs. Meanwhile, the inflexible and unpredictable nature of medical time can be experienced as oppressive and disruptive to the family's care rhythms. Temporal conflicts can create a sense of disconnection, leaving family's feeling out of sync, socially and emotionally. I suggest the need for a new focus on the chronopolitics of care within formal and informal care relations, to support parent carers to regain their temporal autonomy and a regain a shared sense of time and community
Мodes of Temporality in the Narratives about the Accessibility of the Urban Environment
Stasis-Maintenance-(Un)productive-Presence
Crip Theory
Feminist, Queer, Crip
Reflecting on reflexive thematic analysis
The challenges of caring for children who require complex medical care at home
‘It would be much easier if we were just quiet and disappeared’
Temporal Belonging
Retirement Rhythms
From carewashing to radical care
Picture this
Happy Anniversary! Time and critique in International Relations theory
Six Ways of Looking at Crip Time
Moral Laboratories
Crip Time and Radical Care in/as Artful Politics
Crip time as time shit
Clinical forecasting
Have you ever talked to any women with Turner syndrome?' Using universal design and photo elicitation interviews in research with women with mild cognitive impairment
Time Harms
After Crip, Crip Afters
The chronopolitics of racial time
Accumulating care
Matters of time in health and illness
Orchestrating rhythms in autism care
The paradox of haemodialysis
The night is for sleeping
Chronopolitics
Unsettled Care
Genetics, emotion and care
Taking time
Like clockwork? (Re)imagining rhythms and routines when living with irritable bowel syndrome (IBS)
Desynchronised times? Chronobiology, (bio)medicalisation and the rhythms of life itself
| Citation velocity | historical |
|---|---|
| Highly cited | No |