Activating Illness: Tactics from Patient Activism and the Politics of Thalassaemia in Cyprus

UoM administered thesis: Phd

  • Authors:
  • Theodoros Kyriakides

Abstract

Thalassaemia is a blood disorder prevalent amongst the Cypriot population because of genetic, ecological, and social reasons. Although a successful prevention system has been in place since the early 1980s, approximately 650 thalassaemia patients still live on the island whose births preceded the given system. For my fieldwork I spent a year in Cyprus with the PanCyprian Thalassaemia Association (PTA) - a patients group which acts as the main channel of politicisation for thalassaemia patients in Cyprus. By organising events such as conferences, fundraisers and workshops, the PTA strives to maintain the awareness of thalassaemia in the Cypriot public sphere. The association also maintains an agonistic yet healthy relationship with the Cypriot state. Thalassaemia treatment in Cy-prus is provided by public healthcare and, since its foundation in 1973, the PTA has won several skirmishes against the state on issues such as a more reliable blood supply, better provision of medicines, and more hospital space for patients. In addition, the PTA has forged numerous alliances with national and international organisations, patient associa-tions and scientific research bodies which have a decisive say in how thalassaemia comes to be enacted on a Cypriot and global level. Throughout the thesis I focus on the tactics the PTA uses to politically activate thalassaemia. As I argue, activating illness entails mak-ing discernible political dimensions of illness which previously evaded, or were left unac-counted, by public and governmental perceptions. In addition, through the anthropologi-cal analysis of PTA case studies, I develop tactics of my own by which patient associa-tions can activate illness. Through an ethnography and at the same time conceptual de-velopment of tactics, the thesis aims to fruitfully reconcile the ontology and politics of illness.

Details

Original languageEnglish
Awarding Institution
Supervisors/Advisors
Award date1 Aug 2016