Social media and online forums provide spaces where people can gather beyond restrictions of geographic proximity. For some individuals with mental illness, these spaces are vital; providing outlets and communities where a multitude of experiences are accepted and understood, rather than judged against normative, often ableist standards. For nearly three years I’ve studied how people with mental illness use and navigate online spaces, including Instagram, Reddit, and Tumblr. The work I’ve conducted through digital ethnography represents hundreds of hours of online observation, online participation, and interviews. Through this ethnography I draw deeply from the perspectives of people with mental illness; aiming to center their experiences, needs, and concerns. In contrast to prior work, which frequently extracts posts explicitly related to mental illness from online accounts, I illustrate the diverse and complex representations of mental illness online, including how experiences may be implied and better understood when contextualized within everyday life and online practices. Through my empirical work I describe the ways in which people with mental illness participate and respond to various forms of online sociotechnical control, including those involving human and algorithmic actors, such as commenting and content moderation. I demonstrate how online processes of control have consequences, sometimes severe. These processes, through largely operating within online spaces, are not removed from scholarship examining mental illness online and generating design recommendations for social media platforms and other spaces. Following my empirical work, I end by discussing how interventions and recommendations for approaching content related to mental illness online, though motivated from a place of care, can inadvertently result in harmful and oppressive practices and technical features. Rather than caring for people with mental illness, as these approaches often do, I introduce an alternative way forward that involves caring together: anti-oppressive care. This approach to research and design involves working with and alongside people with mental illness to develop online spaces that support a multiplicity of experiences with mental illness and address the problems and concerns of the people with mental illness who use them.

Creator

• Feuston, Jessica

DOI

• https://doi.org/10.21985/n2-gvmh-qx07

Subject

• Information science
• Computer science
• Communication

Language

• en

Alternate Identifier

• etdadmin_upload_768803
• http://dissertations.umi.com/northwestern:15315

Keyword

• Social Computing
• Human-Computer Interaction
• Digital Ethnography
• Mental Illness
• Eating Disorders
• Anti-Oppressive Care

Date created

• 2020-01-01

Resource type

• Dissertation

Rights statement

• In Copyright