“It’s not the end of the world”: living with disability following road traffic accidents in Sarawak, Malaysia

Globally, road traffic injuries (RTIs) are critical public health issues. The Government of Malaysia has implemented initiatives (for example, the mandatory use of helmets and seat belts) to reduce mortality and severe morbidity from RTIs, including the impact on families of deaths and impairments as a result of road traffic accidents (RTAs). However, these issues remain a major problem at household, community and state levels. This dissertation focuses on the lived experience of people who had survived RTAs in Sarawak, Malaysia and the experienced of their carers, during the acute and post-acute stages of injury, including the provision of care to the injured by their carers, self-care, and support provided to households, and the available and accessible at community and state levels. I achieved the research aims (see Chapter 1) through an extensive review of relevant literature and through fieldwork, which encompassed participant observation and in-depth interviews. The results of this research include a number of key findings: the survivors’ severe physical impairments contributed to their exclusion in a range of social, cultural and economic realms, including exclusion from the labour market or employment in low status jobs and stigma linked to discredited identity. Responses and attitudes from members of the community, including community leaders towards survivors were influenced by their understandings about disability. For example, most participants subscribed to the belief that an accident was a personal tragedy and as a result, responsibility for the care of survivors at community level was limited. The majority of carers responsible for the survivors experienced a wide range of challenges, such as lack of financial resources, limited social networks and poor quality of life. In order to cope with daily upheavals, survivors used a variety of resources, including healthcare services, mobility aids, and savings and compensation benefits, but survivors living in poor households were able to access fewer resources compared to those in richer households. The main conclusions drawn from this study are that firstly the burden of care for survivors was significantly placed upon the shoulders of their families and secondly discrepancies between policies and practices exist surrounding the wellbeing of people with disabilities. From a perspective of human rights, it is imperative to address the issue of social exclusion among people with disabilities so that social equality is experienced by everyone. This study projects the ‘genuine’ experience of people living with impairments following RTAs in Sarawak. Due to particular features of geography and public health in the region, their voices are not representative of the experience of all people with a disability in Malaysia, however many common themes can be discerned. In the context of Malaysia, further research should be undertaken in the context of chronic illness and disability, gendered care experiences, and the intersections of identity and disability.