Tweeting Zebras: Social Networking and Relation in Rare Disease Advocacy
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Abstract
This article applies the lens of genre to the social media advocacy of three patient-activists—self-identified “zebras” whose rarely diagnosed conditions are frequently comorbid—who, through performing consistent genre moves, and using the capabilities of social networking to translate personal experiences into public discourse, amplify visibility, and normalize their voices as collective advocacy.
Ultimately, through networked communication, these patient-activists perform emergent connections between their conditions outside of the traditional legitimization networks of biomedicine with the aim of gaining legitimacy in public and clinical settings.
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References
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