Date of Graduation

5-2025

Document Type

Thesis

Degree Name

Master of Design in Communication or Design (MDES)

Degree Level

Graduate

Department

Art

Advisor/Mentor

Place, Alison

Committee Member

Issa, Nadia

Second Committee Member

Chioffi, David C.

Keywords

Autonomy; Graphic Design; Interactive Narrative; Postural Orthostatic Tachycardia Syndrome; POTS

Abstract

Postural Orthostatic Tachycardia Syndrome (POTS) is an autonomic nervous system disorder with multisystem impacts. Classified as a chronic illness and oftentimes triggered by viral infections, incidents of POTS have become increasingly common following the outbreak of COVID-19. Primarily affecting young women ages 18 to 30, POTS disrupts an individual's health during their transition to adulthood. This issue is further complicated by medical gender bias, latent care, and misdiagnosis, which leave this demographic vulnerable within traditional healthcare systems (Shaw et al., 2019). As traditional healthcare systems primarily address acute rather than chronic conditions, interactions with these systems are intermittent. Consequently, individuals with POTS self-manage their condition to achieve or maintain a stable health status (Dubberly et al., 2010). Constant engagement with and movement through the Continuous Cycle of Health Self-Management requires self-determination and, more specifically, autonomy (Ryan et al., 2000). In the context of chronic illness, autonomy refers to the capacity to make choices and retain control over one's daily life despite physical limitations or increased dependence on others (Koester, 2020; Ringstad, 2016). To support young women navigating the constraints imposed by chronic illness and to create opportunities for stable health outcomes, this thesis explores how the design of interactive narratives can foster autonomy for young women with POTS. This research employs a mixed-methods approach that examines autonomy through a Disability Justice lens. Disability Justice is a framework that goes beyond Disability Rights and inclusion, acknowledging the intersectional experiences of individuals with disabilities while striving for collective liberation. This focus shapes the research conducted and the interventions developed, creating a space for collective knowledge and liberation through interactive narratives.

Interactive narrative, as a tool for intervening in the problem space, is derived from Todorov's Theory of Narrative Equilibrium and the dimensions of Interaction Design. Narrative equilibrium functions similarly to the Continuous Cycle of Health Self-Management in that a user starts at one equilibrium (stable health), experiences a disruption (context change, condition change, or regimen change) that leads them to disequilibrium (unstable health). From here, users move through the process of realizing (reconciling), repairing (habituating), and restoring (understanding) to reach a new equilibrium (stable health) (Todorov et al., 1969). In addition to the parallels between narrative and self-management, narrative creates opportunities for autonomy through what author H. Porter Abbot refers to as narrative gaps (Abbot, 2009). Combining narrative gaps with interaction design, this thesis proposes a projection-mapped experience that immerses participants in the cycle of gaining and losing autonomy over their personal narratives. This intervention is complemented by a speculative exhibition that incorporates three additional narratives to restore participants' autonomy. Ultimately, this thesis seeks to contribute to the fields of disability studies, healthcare design, and interaction design scholarship, creating new possibilities for stable health.

Comments

Complete thesis can be viewed as supplemental file.

Additional Files
DesigningforAutonomy_JGobble.pdf (35586 kB)
Complete thesis.
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