THERE WAS NEVER REALLY ANY CHOICE - THE EXPERIENCE OF MOTHERS OF DISABLED-CHILDREN IN THE UNITED-KINGDOM

This article focuses on two main themes. First, it examines the impact that caring for severely disabled children has on the lives of their mothers: the exacting work they undertake, the restrictions they encounter and the choices they have to make. Second, it suggests that those very services which it is assumed will be helpful and relief-giving, are not only fragmented and thin on the ground, but are also often experienced as a mixed blessing, adding to the work load and inducing further stress in a number of ways. Some of the parents whose opinions have contributed to this article, are those who took part in a small-scale research project on the relationships between parents of disabled children and professionals. Others include those who participated, often in the role of teachers, in a series of open studies courses for service providers and consumers at Warwick University between 1980 and 1985.