Living with the spark : recognising ordinariness in the lives of disabled children and their families

Over recent decades, while substantial advancements have been made in the
understanding of living with impairment in a disabling world, the family
experience of disablement has been less widely recognised. This thesis is
primarily a comparative exploration of literature around disabled family
experience, augmented by a small amount of fieldwork to test out a developing
theoretical framework through which to develop support systems enabling
disabled children and their families to live ordinary lives. Data collection involved
18 months of in-depth and serial qualitative interviewing with 6 families.
Disabled children/young people, their non-disabled brothers and sisters and
their parents were engaged in the process through interviews, conversations,
artwork, ‘spending time with’, and ‘going out with’. Visits to a range of family
support services took place and the views of service providers were included
through interviews, networking, meetings, conversations and collaborative
working. Placing the data firmly within the context of a disabling world, it is
evident that all family members suffer from disablement. It is equally evident that
this understanding is not reflected in the theoretical perspectives informing
support services. The thesis identifies key features of a theoretical framework
to underlie the provision of support services that might allow families to lead
ordinary lives. Central to this framework is the position of paradox in the lives of
families living with impairment and disablement; the recognition of the family
experience of disablement; the need for family support services to be based
firmly within an understanding of our interdependent nature; and finally, the
need for support services to prioritise respectful relationships.