A consuming threat: The materialisation and negotiation of 'immigrant tuberculosis' in Sydney, New South Wales

Abstract

Tuberculosis (TB) remains a stigmatised disease that exerts a considerable toll on morbidity and mortality internationally. In Australia, where the burden of disease is borne largely by immigrants, it is indissociable from immigration discourse(s), which suffuse public health policy and practice(s). Although significant attention has been afforded to mapping the incidence of disease amongst the ‘overseas-born’ and examining the antecedents to current approaches to TB control, little attention has been afforded to examining how and why TB is constructed as such. Inadequate consideration has been afforded to exploring how immigrants diagnosed with TB in New South Wales (NSW) negotiate the experience of living with the disease. This thesis seeks to address these lacunae, through adopting a theoretical framework informed by Discourse Theory. This enables us to grasp the ways in which political discourses, policy, legislation and subjects lived experience(s) intersect. It encompasses a mixed methods approach, including an analysis of print media constructions of TB, a genealogy of the border control regime, as well as in-depth interviews with immigrants diagnosed with TB (n=14) and healthcare professionals engaged in their care (n=5). The genealogy charts the evolution of the border control regime and concludes that whilst the importance afforded to border control as a panacea for maintaining low overall rates of TB continues unabated, actual instances of enforcement of migration law serve a mainly symbolic function that continues to foreground the ‘non-citizen’ body as a source of ‘risk’. Print media discourses lend credence to the performativity of the law in this respect, maintaining a pre-occupation with the notion of TB as a disease carried by immigrant bodies. Whilst the association of TB with border control is writ large in the political imaginary, participants’ experiences of TB are more divergent. Whilst many acknowledge the notion of imported disease, through reference to ‘origin narratives’, more general issues with their negotiation of the healthcare system as a population group lacking extensive social support networks are evident. Both initial diagnosis, which is often highly isolating and confronting and the imposition of TB treatment regimens that conflict with the demands of everyday life are identified as sources of concern. These findings highlight the need for a paradigm shift in TB care in NSW, acknowledging the many faces of TB treatment and the social support needs of immigrants. As such, tailoring programs for TB care involves more than a consideration of economic contexts and service delivery capabilities. Instead, it involves sensitising responses to the particular burden of disease, recognising that TB is differentially experienced. This entails more closely examining who is affected, how they are affected and what the optimal approaches to treatment support are in the NSW context.