In many parts of the world, citizenship remains a status and an identity to be claimed and struggled over. Such struggles amongst those excluded from citizenship reveal important understandings of what citizenship consists of: adherence to some notion of justice; recognition; self-determination and solidarity (Kabeer 2005). In the UK the emergence of service user and carer movements during the final decades of the 20th century highlighted tensions between strategies based on claims for citizenship and those based around the emerging identity of the ‘welfare consumer’ (e.g. Barnes 1997a, 1999). The power of the consumerist rhetoric is evident in the centrality of ‘choice’ within contemporary health and social care policy and its embodiment in the adoption of individual budgets as the mechanism through which a wide range of users of social care services will access support. Yet as Clarke et al. (2007) show, the identity of the ‘consumer’ remains problematic and the objectives of user and carer movements cannot adequately be understood by reference to consumerist discourse (Barnes 2009).

In this chapter I consider both official discourses relating to carers and carers’ own constructions of their identities by reference to notions of citizenship. I do this by considering the emergence of the carers’ movement in England, by drawing on interviews with carers about their experiences of caregiving, and by analysis of a recent government policy document setting out a strategy for carers (HM Government 2008a). The participation of service users in governance processes and in autonomous collective action has had an important impact on policymaking in England since the late 1980s. However, rather less attention has been given to collective action by those who provide care as family members or friends of disabled or older people than has been given to movements of disabled people, or users/survivors of mental health services.

Indeed, the emergence of collective action amongst different groups and the assertion of rights claims by both carers and disabled people have led to tension between these groups. The concept of ‘care’ has been rejected by some disabled activists (Wood 1991; Shakespeare 2000) and whilst there has recently been a recognition that disabled people and lay carers share interests in campaigning for good quality support services, there remains a reluctance amongst some within the disability movement to accept the language of care as the basis on which such help should be enabled (Beresford 2008).