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My dissertation analyzes memoirs of chronic illness as cultural sites of reflexive identity construction. Specifically, drawing upon 40 critically acclaimed illness memoirs published between 1980 and 2017, I explore how authors of illness memoirs make sense of their experiences and identities by reflecting upon what Everett Hughes (1945) calls the contradiction of status that they commonly face. Authors tend to embody both the non-normative status of being ill and the normative status of privileged individuals, i.e., mostly white, highly educated, successful, professionals, e.g., professors, doctors, actors, authors, activists, etc. Sociologist Arthur Frank (1995: 119-120)—himself a memoir writer—rightly emphasizes that authors themselves tend to be highly aware of, and often exploit this contradiction of status. Yet, while aware of the privileged status of memoir authors, scholars—including Frank—have yet to explore the momentous cultural implications of authors’ effort to make sense of their dual status.
Through the reflexive work of making sense of the contradiction of the status of being both privileged and ill, authors of illness memoirs become sensitized to two opposite, culturally powerful, and still under-studied assumptions about the relationship between social privilege and illness: “privileged people are immune to illness” and “no one is immune”. I argue that authors tend to be critically reflexive towards both assumptions, which they recognize as one sided or double edged. In order to explore how authors critically reflect upon these two assumptions, I develop two concepts of reflexive practice that respectively deal with a particular assumption: the practice of estrangement that critiques the assumptive association between privilege and immunity, and the practice of normalization that critiques the assumption that no one is immune.
The assumption that “privileged people are (more) immune to chronic illness” often serves to essentialize social inequality through medicalized language: equating privilege with the normative biological status of health, and vice versa. The “privileged people are immune from illness” assumption is not simply a myth that reinforces difference in privilege, however, but is actually supported by two competing discourses of public health. What I call the responsibility theory of health accounts for the association of privilege with health alluding to privileged people's supposed tendency to adhere to the value of responsibility towards one's own health. The resource theory of health, in contrast, seeks to explain the association by emphasizing privileged people’s access to a greater pool of resources, such as money, power, prestige, knowledge, and social connections.
The alternative to the presumptive association between privilege and immunity is the assumption that no one is immune. This assumption is supported by what I call illness identity discourse. Basically, illness identity discourse argues that biology autonomously divides people into two categories, regardless of their social privilege: healthy and ill people. In this view, healthy people are insiders simply because of their biological luck of not yet becoming ill, while ill people are outsiders from the normal world simply because of their illness. In view of this dualism between insider and outsider, I call the process of becoming ill, estrangement. Moreover, illness identity discourse tends to emphasize that, given our inability to control the onset and the development of chronic illness, and the illegitimate social stigma of the ill, the difference between healthy and ill people is regarded as the most fundamental dividing line in society. Or, being ill is the worst.
Even more interestingly, while authors generally find the assumption that no one is immune useful in making sense of their becoming ill “in spite of” of their privileged status, they also come to critique the assumption for making it hard for them to normalize their illness. By this I mean the process of coming to both recognize that healthy and ill people as not wholly distinct, and to recognize that illness per se may actually not be the worst kind of suffering. The assumption that no one is immune to illness can render normalization difficult by overemphasizing the role of biology in the determination of embodied well-being. It may thus easily lead to the wholesale denial of differences in privilege in the shaping of embodied well-being, which is what the responsibility and resource theories of health emphasize. This recognition tends to lead to the reflexive effort to create a middle ground between the contradictory assumptions and the discourses that support them.
In view of the double-edged character of both assumptions, I construct two heuristic conceptions of reflexive practice to explore how authors critically reflect upon a particular assumption about health and illness in their effort to make sense of their own contradiction of status. First, the reflexive practice of estrangement mediates the author’s shift from the insider status of being healthy and privileged to the outsider status of being ill yet privileged. In this shift, authors come to invalidate the commonsense association of privilege with illness, while adopting the counter-assumption that no one is immune from illness. In adopting this counter-assumption, authors give up the commonsense view of society as stratified along differences such as race, class, gender, sexuality, etc. Instead, they come to regard society as fundamentally divided by the uncontrollable power of biology, which allows some to remain healthy while making others ill in a random manner. Illness is seen as the worst because it is both uncontrollable and leads the person to be stigmatized even though she is morally blameless for her illness.
Second, the reflexive practice of normalization mediates the authors’ effort to both blur the boundary between healthy and ill people and to limit their sense of worstness of being ill. In doing so, they critique the one-sided adoption of the assumption that no one is immune, which is supported by illness identity discourse. Rather than adopting the counter-assumption that privileged people are immune to illness, however, the practice of normalization seeks to reassert the role of personal and collective agency underlying the responsibility and resource theories of health in a limited manner. In doing so, authors give up illness identity discourse’s dualistic view of well-being as fundamentally defined by biology. They thus come to adopt a complex and dynamic view of society where biology, personal agency, and collective agency collaborately shape the embodied and symbolic well-being of individuals.

ETD_9324

Ph.D.

Includes bibliographical references

by Hwa-Yen Huang

doi:10.7282/t3-kv49-nm94

ETD doctoral

The author owns the copyright to this work.