The Digital Domain of Hope: New Zealanders and Australians Aging With Parkinson's Disease on Facebook

Abstract

Parkinson’s Disease is one of the most common neurodegenerative diseases in older populations, second only to Alzheimer’s. There is no cure, but treatment, by medication, and physical and speech therapy, can help manage some symptoms. Nonetheless, it is generally characterized by uncertainty; uncertainty in symptoms, as they appear piecemeal; in the efficacy of emergent clinical treatments; and in scientific research on the future for Parkinson’s Disease. This thesis about a group of older people (65 and over) with Parkinson’s Disease in New Zealand and Australia, and how they deal with this uncertainty in their communications online. Drawing on semi-structured Zoom interviews with 15 people with Parkinson’s and two carers, all of whom are active in online Parkinson’s discussion groups, and textual analysis of 5 interviewees’ posts, I investigate how this group make sense of and act towards their futures. I suggest that for people with Parkinson’s on New Zealand and Australia Facebook groups, hope is often embodied through the stance of “Being Proactive.” “Being Proactive” is a culturally and historically situated mode of knowing and acting in and on one’s body, between embodied, scientific and clinical knowledges, that draws on neoliberal ideas of individual responsibility, local notions of good humour, and an emphasis on sharing and sharedness. The values encapsulated in “Being Proactive,” I argue, are constitutive of membership in the Facebook groups for people with Parkinson’s in New Zealand and Australia, defining the ways in which one acts and is recognized as a member in the groups. It is through defining, sharing, redefining, and embodying these ideals that people with Parkinson’s construct hope on the Facebook groups in the active sense, as something one does, rather than hope as something intangible that one imagines. Despite providing a model for hope and meaningful personhood in the face of neurodegenerative illness, however, the emphasis on “Being Proactive” is exclusive; to view “Being Proactive” as constitutive of membership also highlights its boundary-making implications. Indeed, in the same way that many people in New Zealand and Australia do not have reliable access to digital technologies or the internet, hope, in the way it is defined in these groups, is not equally accessible.