Introduction
One feminist definition of care is ‘a labour of love’ (Graham, 1983: 13). This nicely captures the nature of caring as work that is both infused with and concealed by the emotional bond that exists between those in a care relationship, especially when that care is given to a disabled son or daughter. In this chapter, we shed light on the lived realities of being a parent-carer, in which care is experienced as gratifying yet demanding work, and explore how this work affects parents’ employment careers and lives in Finland and Sweden.
Who performs care work and on what terms are matters of social organisation. Finland and Sweden each have a dual-earner employment and social system in which women and men are expected to have paid work, and extensive public care services have been established to facilitate women's entrance into the labour market (Anttonen and Sipilä, 1996). In recent years, however, public care services have been dominated by a new development in the policy agenda, especially in Finland, which has encouraged and supported unpaid family care (see Chapter Two). This policy agenda has been counterbalanced by ambitious developments in disability policy, particularly in Sweden. The state's support for people with disabilities affects the care responsibilities of parents of disabled children in important ways, and before examining parents’ experiences of reconciling care and paid work, we first review developments in disability policy in Finland and Sweden, indicating how these have shaped the conditions in which parent-carers attempt this.
Current trends in Finnish and Swedish disability policy
Disability policy has undergone similar kinds of ideological change in both Finland and Sweden in recent decades, under the influence of various factors: the principle of ‘normalisation’ (Nirje, 1969); the growth of the independent living movement (DeJong, 1979); and the development of the concept of human rights. These can be summarised as: