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Literary Hypertext as Illness Narrative for Women and Nonbinary Individuals with Hyperandrogenism

  • Author / Creator
    Perram, Megan
  • Illness narratives, or autobiographical accounts of the lived experience of pathology or disability, have been established as an effective therapeutic intervention for responding to emotional well-being related to illness (Couser, 1999, 2004, 2005, 2009; Frank; Hartman; Hawkins; Irvine & Charon; Kleinman; Mintz; Sontag). The scholarly field related to illness narratives is currently grappling with the genre’s expansion from the traditional book to digital-born narratives, however, there is limited research analyzing illness narratives built through literary hypertext. Literary hypertext is a form of digital story writing that calls on the reader to participate in the narrative’s unfolding by selecting hyperlink options which branch the narrative into nonlinear directions. There has been a revival of scholarly and public interest in literary hypertext in the past decade, owing to the genre’s culture of free production and distribution. This culture has contributed to a steep rise in the popularity of literary hypertext tools, such as Twinery.org, amongst minority designers who are often excluded from male-dominated and white spaces of game development (Anthropy 90; Harvey 96). Turning towards the intersection of medical/health humanities, gender studies and digital humanities, this project questions how women and nonbinary individuals with the illness hyperandrogenism can use hypertext technology to write illness narratives that construct positive relationships between their identities and the world. Hyperandrogenism is a complex condition characterized by high levels of androgens in the female body. Ten participants with hyperandrogenism completed a two-hour pedagogical Twine module on hypertext illness narratives. Participants concluded the study by submitting a personal literary hypertext illness narrative and participating in a Closing Interview to detail their experience with the technology. The corpus of this research was analyzed through a feminist new materialist theoretical framework and a novel methodology called Critical
    Discourse Analysis for Digital-Born Narratives developed for this project. The findings of this research suggest that literary hypertext technology was used by participants to visually map and manually chart experiences through the practice of hyperlinking in order to create a structure perceived as best suited for therapeutic reflection. Ultimately, participants argue that writing a single illness narrative, in any format, cannot produce a transformative, encompassing therapeutic result. The value in engaging in writing a literary hypertext illness narrative was found through the unique process of reflection on past experiences and knowledge dissemination to the wider community, in line with a narrative medicine framework. Participants believe that for literary hypertext illness narratives to cultivate true therapeutic value, they must be tools, not only for the author to reflect on illness, but for the wider social and medical community to read and learn about the experience of hyperandrogenism.

  • Subjects / Keywords
  • Graduation date
    Fall 2023
  • Type of Item
    Thesis
  • Degree
    Doctor of Philosophy
  • DOI
    https://doi.org/10.7939/r3-bf6b-gd62
  • License
    This thesis is made available by the University of Alberta Libraries with permission of the copyright owner solely for non-commercial purposes. This thesis, or any portion thereof, may not otherwise be copied or reproduced without the written consent of the copyright owner, except to the extent permitted by Canadian copyright law.