Do-It-Yourself Technologies for Type 1 Diabetes Self-Care and the Transformation of Defined Social Roles

• In Event: The Grey Zones of Illegality and Informality: Creativity, Cunning and Innovation

Abstract

Do-it-yourself (DIY) modifications of diabetes technologies have gained momentum in recent years. People with Type 1 Diabetes (T1D) are hacking their glucose-sensors in order to get real time access to glucose data, or programming artificial pancreas systems. Even though those developments are set outside of institutionalised infrastructures, they disrupt the traditional healthcare system and its hierarchical structures. Drawing on empirical findings of a situational analysis, the objective of this paper is to explore the dynamics and complexities of these DIY practices and their influence on the defined social roles of actors in the healthcare context. The empirical material, both conducted interview-based and ethnographically, shows that patients take on the work of IT-support for other patients, physicians themselves are ‘hacking’ diabetes technologies with the help of their patients, or programmers are acquiring legal knowledge to circumvent legislative regulations. New forms of empowerment, solidarity and patient-centered expertise can emerge, but at the same time questions on liability, risks and inequality for people with digital illiteracy are evolving.

Author

• Bianca Jansky, Ludwig-Maximilians-Universität Munich