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:

• • Normalisation – The core statement of the normalisation principle is that disabled people should have access to living conditions and lifestyles that are common in their societies. It includes the idea that people with disabilities should have the same opportunity to experience life-course transitions as others: living with their parents in childhood and moving away from home and starting a life of their own in adulthood.