Abstract

In the final chapter of Caring Democracy, Joan Tronto poses the question “how do we go from a society that is primarily concerned with economic production to one that also emphasises care?” (2013, 169). As illustrated in the contributions to this collection, participation in political processes and in decision-making about responsibilities for care are understood as crucial in answering this question (see Heier, Bougault, and White this volume). Who is excluded from political participation, and how to challenge the power of those who operate from a position of ‘privileged irresponsibility’ in the allocation of care, are key areas of concern for making democracy more caring and caring more democratic. However, there is a further question concerning participation in how knowledge about care is produced? The ‘epistemological dimension’ of care is recognised in care ethics through the concept of ‘responsiveness’ in which attention to the care-receiver’s experience informs the care process at the micro level. But what counts as ‘knowledge’ about care in political processes and policy decisions at the macro level is also highly significant. Yet, the inclusion of care-receivers at the level of ‘knowledge production’ is less developed in care scholarship. Within the academic and practice worlds another dimension of participation operates, whereby most knowledge about care is produced without the inclusion of care-receivers and with little regard to their lived experiences of care. This chapter explores this using the example of empirical research that was co-produced with older people about lived experiences of care within the English social care system. We argue that building knowledge based on the lived experiences of care with those who have direct experience is necessary for the democratisation of care. Knowledge produced from lived experience can make sense of theoretical concepts and consider their relevance to ‘everyday life’. But crucially, within the current neoliberal context where only certain types of knowledge are admissible, the actual experiences of care under neoliberalism directly challenge the assumptions that underpin the consumer choice rationale that supports the marketisation of care.