Sociopolitical Formations + Technology

Technology has opened up new forms of communication that can connect previously isolated people who share a similar experience or situation. Our interest was in understanding the role online support groups play in supporting people diagnosed with rare diseases. The current study employed a sequential mixed methods design to explore how persons with brain Arteriovenous Malformations (AVMs) – a complex and rare vascular abnormality - use online support groups. The first study involved a thematic analysis of content from a public Facebook support group, “AVM (Arteriovenous Malformation) Awareness.” The study highlighted treatment, recovery, and the diagnosis process as key topics of discussion. These findings then informed a structured interview guide for a second study involving interviews with 15 young adults from The Joe Niekro Aneurysm & AVM Foundation. Analysis of these interviews revealed four key themes, emphasizing the importance of community, technological advantages and shortcomings, and the role of caregivers. The findings highlight how online spaces can be effective in providing a sense of belonging and community that would be impossible with traditional forms of communication.

This work highlights how media environments reshape perception and attention.  In particular, this research demonstrates how online spaces impact the perception and navigation of rare diseases.

*Additional Authors:

Dr. Gail Anderson (she/her), Professor, Burnaby Mountain University; Co-Director, Centre for Forensic Research

Dr. Ted Palys (he/him), Professor, SFU School of Criminology; Associate Member, SFU Department of Indigenous Studies; Senior Fellow, Toronto Metropolitan University Centre for Free Expression

This essay suggests that the ongoing genocide in Gaza, and responses to it around the globe, present the clearest available perspective on the colonial logics of dehumanisation and exploitation that are embedded in our technologies. These logics stretch back to our earliest uses of primitive technology and work across three processes: categorisation- the creation of difference; abstraction- the separation of the object and the signifier; and instrumentalisation- the subjection of the human to the logic of the machine. The dimensions across which different categories are defined take place on lines of race and gender that have emerged out of colonial systems. Abstractions work to reduce and dehumanise the Other to facilitate their exploitation. Instrumentalisation is achieved when humans comply frictionlessly according to the expectations and logics of these processes. Exploring and historicising the relationships between these concepts with reference to relevant examples through history helps us contextualise how the processes driven by these logics have progressed at an exponential rate. The introduction of cybernetics outlines how this view has become all-encompassing, and the manifestations of these logics in Gaza hold implications for our shared future. I conclude with possibilities for deviations, alternatives, and means of resistance, highlighting a dialogue between two Palestinians on the transcendental, transformative potentials of beauty and grief.

Once emerging technologies diffuse into society and become everyday artifacts, they often fade into the background of our lives where only inputs and outputs matter and their infrastructure and information flows remain largely invisible (Latour, 1987). For some users, the black box of technology remains open as they continually assign new meanings, uses, and cultural significance to an artifact, even after it reaches relative closure. This engagement with technology can give rise to communities that centre technology’s flexibility and its ability to catalyze societal change. By exploring these complex human-technology relationships, scholars can better understand what users do with technology, and what technologies do to users. For instance, Turkle’s ethnography on MIT’s hacker community shows how users’ relationships with their personal computer can inform conceptions of their relationships, values, philosophies, and themselves. On the other hand, in Turner’s (2006) investigation of the cyberspace community, The New Communalists, users imbued the early internet with “hippie” ideals such as reciprocity, community, and decentralizing, helping to shift the meaning of the personal computer from industry tool to personal communication device. This research advances empirical understandings of the co-production of users and technology through an investigation of the digital currency, bitcoin, and a community of users that call themselves “bitcoiners.” Grounded in communication studies, science and technology studies, and economic sociology, this project follows a community of bitcoiners as they engage with bitcoin not only as a socially constructed technology, but as a cultural artifact that mediates their lifeworld.