Out of Sync? Rare Genetic Disease and the Chronopolitics of Care

TL;DR

This paper explores how caring for children with rare genetic diseases disrupts family time and social inclusion, using the concept of 'crip time'.

Contribution

It introduces the chronopolitics of care as a new theoretical framework linking disability studies and sociology of time.

Findings

Parents of children with Noonan Syndrome experience conflicting temporal rhythms in care.

Medical time is often inflexible and disrupts family care routines.

A focus on chronopolitics can help support caregivers' temporal autonomy.

Abstract

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.