Doctor of Philosophy (Ph.D.)
Degree Granting Department
Sara Green, Ph.D.
Donileen Loseke, Ph.D.
Robert Benford, Ph.D.
Lori Roscoe, Ph.D.
chronic illness, contested illness, culture, episodic disability, narrative, public policy
In the United States alone, disability touches the lives of a tremendous amount of people. An increased prevalence of chronic illness, coupled with an aging population means it is likely and perhaps inevitable that everyone will experience disability in one way or another over the course of their lifetime. However not everyone who is disabled is recognized as such. Culturally, the narrative of “the healthy disabled person,” – or someone who is healthy, permanently, predictably, and visibly disabled renders many people with chronic and episodic pain, fatigue, and illness as unrecognizable as disabled. Even though increasing numbers of disability scholars have begun to acknowledge that the embodied experiences of disability are far more fluid than the theoretically static divisions between healthy or ill, abled or disabled allow for, there has been little research that explores the experiences that exist in between these spaces In this dissertation I use narrative analysis to examine “who counts” as disabled in the United States, and why by exploring the interconnected narratives of disability at the cultural, institutional, and personal levels of society.
In the first of three substantive chapters I examine cultural narratives about contested illness published in The New York Times between 1999 and 2016. I argue that stigmatization of episodic illness and disability occurs when the reality of lived experiences contradict the cultural assumptions and expectations; namely that health and illness, disability, and ability are natural, discrete, and static states of being for physical bodies. In the second chapter I examine institutional narratives of disability as they are told in town hall meetings for the Americans with Disabilities Amendment Act. I argue that these narratives serve to distinguish between morally good people with disabilities who deserve to be protected and accommodated in the workplace, and those who would use disability as an excuse to take advantage of their employers. In the final substantive chapter, I examine how women with chronic and contested illness reconstruct their identities through narrative in an online forum. I argue that these online spaces are an important site from which these women are able to counter the stigmatization and isolation that results from the dominant narrative that portrays them as morally corrupt. In each of these three chapters I find that the shifting and unpredictable reality of bodies that appear normal, healthy, and abled sometimes, and periodically ill, impaired, and disabled others are at best culturally unrecognizable as disabled and at worst, subject to disbelief and hostility regarding their claims as such. I argue that in order to overcome the stigmatization and disbelief of invisible and episodic disability, we need a cultural reorientation towards the story of disability; one that moves away from the belief that it is something that only happens to a small number of people in society, and towards an understanding of disability as an inevitable experience for the majority of the population; and in doing so works towards a more inclusive society that is designed to meet the needs of an ever changing and diversifying population.
Scholar Commons Citation
Welch, Melissa Jane, "Decreased Visibility: A Narrative Analysis of Episodic Disability and Contested Illness" (2018). Graduate Theses and Dissertations.