Cyberanatomies of Hope
Cyberanatomies of Hope
This chapter explores how the embodied dynamics of illness and chronicity shape online modes of health-seeking by comparing the experiences of people living with spinal cord injuries (SCIs) to those of people suffering from amyotrophic lateral sclerosis (ALS). As diverse biological conditions become increasingly mediated by digital modes of representation, these emergent forms of “biomediation” catalyze new hopes and possibilities for those seeking to challenge orthodox prognoses and bodily limitations. While the chronic nature of SCI enables the formation of robust and stable online communities such as CareCure, the cybersociality cultivated by people living with the immediate threat of ALS is much more contingent and ephemeral. The kinds of social connections forged online in turn shape the forms of mobilization and digital pathways to experimental medicine.
Keywords: amyotrophic lateral sclerosis, ALS, spinal cord injuries, illness, chronicity, biomediation, cybersociality, experimental medicine
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