Social (In)Visibility and Disease Performativity: Qualitative Insights From Two US Case Studies

This thesis centres on questions of (in)visibility in the lives of US “patients” with one of two chronic diseases (alkaptonuria and vitiligo). Specifically, it explores the role that social (in)visibility plays in the everyday lives of “patients” from both disease groups who experience their disease in relation to other social identities that they simultaneously occupy (including race, class and gender. In this thesis I conceptualise (in)visibility with respect to a wide range of issues related to the ways in which respondents exhibited and/ or failed to exhibit themselves and their diseases. Using grounded theory as a methodological framework, I collected data using a number of qualitative methods, including: semi-structured in-depth interviews, two ethnographies that took place at patient workshops in the US and the UK, and participant observation. This thesis consists of 4 empirical chapters that centre on issues pertaining to stigma, passing, pain and personal responsibility. Each of these issues is deeply embedded within narratives of how participants conceptualised their experiences of being “seen” and “unseen” in relation to their diseases, and speak to how those feelings are, in turn, informed by their disease’s relative (in)visibility. The first chapter, “Experiencing Stigma: Narratives of Precarity, Vulnerability and Loss,” details the ways in which participants are routinely stigmatised because of their disease, and how their anticipation of stigma affects them on an everyday basis. The second chapter outlines the ways in which participants seek to conceal their disease from the public by masking their symptoms and/ or drawing attention away from them through the use of external objects. The third chapter considers pain as a non-visual signifier of “illness,” and explores the ways in which experiences of being “seen” and/ or “unseen” in relation to their condition influences the participant’s understandings of pain. My final empirical chapter considers how contemporary assumptions about the individual’s ability to take responsibility for their health overlooks the financial, social and political restrictions that render many incapable of doing so. As a result, I argue that the individual is “invisibilised” within a system that stresses a need for personal responsibility whilst overlooking the individual’s (in)capacity to assume it.

Name dc:type.qualificationname

Doctor of Philosophy (PhD)

Level dc:type.qualificationlevel

Doctoral

Grantor dc:publisher.institution

University of Cambridge

Year dc:date.issued

2019

Author dc:creator

• Spratt, Tanisha Jemma Rose

Advisor dc:contributor.advisor

• Weinberg, Darin

• invisibility
• performativity
• health

Licence

• https://apollo8-f-pro.lib.cam.ac.uk/bitstreams/9a58bd22-d14d-4157-be61-31762e009e38/download
• https://www.rioxx.net/licenses/all-rights-reserved/

Language dc:language

en

DOI dc:identifier.doi

https://doi.org/10.17863/CAM.46077

OAI identifier oai:identifier

oai:www.repository.cam.ac.uk:1810/299017