Presented by the Social Innovation Research Institute
What are the forms and capacities for collective care in the current digital ecosystem? How is care understood and enacted via automated systems; between social media platforms, apps, and wearable devices; within health service-supported online forums; and across the dark web? This seminar series looks at evidence and answers, as well as research practices and ethics, to understand personal and collective attempts to negotiate, manage, circumvent and otherwise find ways to reinvent cultures of care through digital platforms.
Our March webinar focuses on care and the politics of inclusion in health and policy research.
Exploring Creative and Culturally Safe Research Methods for Digital Community Health
Ruth DeSouza, RMIT
In this presentation I will share methodological learnings from a project which explored how women from migrant and refugee backgrounds used digital health technologies during the perinatal period, and how these learnings might contribute to making healthcare more just. Health professionals have a mandate to provide care, but there is ample evidence of healthcare delivery that is uncaring. Routine activities can reinforce health inequities whether through inattention or increased surveillance of groups always already marginalised in society. Cultural Safety developed by Indigenous nurses offers a way of exposing deeply embedded beliefs, practices, systems and structures that create and maintain disadvantage, and transforming them. This critique highlights how the health system is oriented to the preferences of an imagined user who is typically able bodied, middle class, white, straight and cis.
Self-tracking devices, apps and platforms appear to be critical enablers of new models of participatory healthcare as they disrupt these privileging dynamics of a gatekeeper health professional. In personalising health communication, they seemingly provide opportunities for increased participation for culturally and linguistically diverse (CALD) communities. However, the lack of their inclusion in the development of these digital health innovations risks reinforcing inequities because the wealthy, worried, well and white are centred.
Dr Ruth DeSouza is an RMIT Vice Chancellor's Fellow, based in the School of Art. Her fellowship project aims to engage health professionals in finding new ways to understand, co-design and implement sustainable cultural safety initiatives in a range of health contexts.
The Queer Politics of Disclosure
Daniel Reeders, Australian National University
In a recent piece for QED I describe the dilemmas arising when academic institutions require people with disabilities to disclose their condition in order to be considered for ’reasonable adjustments.’ As a PhD candidate, it is crucial to maintain the narrative of career potential, which is structured in developmental terms: like an infant, you must be seen to be ‘hitting your milestones.’ I draw on José Esteban Muñoz’s queer practice of disidentification to imagine practices of disclosure that resist the demand to tell the whole story — to bind oneself to diagnostic categories that foreclose crucial possibilities. In this presentation I describe practices of fragmentary disclosure that I have adopted in social media spaces as I negotiate living and working as an academic with mental illness. These variegated practices may contribute to what Michael Hurley (2002) theorises as a culture of care for mental health, a queer utopian project (Muñoz again) aimed at making it easier and safer to exist in various degrees of mental health and wellbeing.
Daniel Reeders is a writer, researcher, practitioner, advocate and occasional activist working in queer health, HIV and illicit drugs. He writes the Bad Blood blog about stigma and public health strategy and tweets as @engagedpractx.