Family, disability and (im)mobility : geographies of families with wheelchair-using children with cerebral palsy

Abstract: Mobility is important in shaping people’s lives and experiences through places visited and social interactions with other people. In families with children, mobilities are usually complex and include negotiations between various family members, affecting how they move about in time-space. While children in general often are dependent on parental support in relation to transport, children with disabilities tend to be even more reliant on their parents, not least because they are highly car dependent due to social and environmental barriers associated with other transport modes. This implies that not only disabled children, but also other family members, could be affected by disability related mobility constraints. This thesis focuses especially on mobilities of Swedish families with wheelchair-using children with cerebral palsy. Based on interviews, time-use diaries and a survey, I explore how disabling barriers affect families’ daily and tourism mobilities. I use a time-geographical framework, especially focusing on projects and constraints. My findings show that these families experience many constraints on mobilities and numerous negotiations and adaptations need to be done to enable mobility for all family members. Oftentimes, it is the disabled child’s mobility that is prioritised, which in everyday life often is related to an increased number of trips (e.g. appointments with physiotherapists, doctors and other authorities involved in healthcare) as well as longer distances travelled to reach accessible (pre)schools and leisure activities. Parents are often accompanying their children, which limits the time available for the parents’ own mobilities, impinges on their geographical reach and affect their possibilities on the labour market. A solution to improve opportunities for (independent) daily mobility for all family members is to have personal assistance in combination with special transport services for the disabled child, which are part of the Swedish support system. For tourism mobility, families often travel together and disabling barriers affect how and where they can travel. My findings show that these families have a limited set of tourism destinations that they can travel to. Disabling barriers on tourism mobility can be negotiated by leaving the disabled child at home or going on separate trips. This opens up mobility opportunities for the non-disabled family members, but can put further limitations on the mobility of the disabled child.