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Why me?

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TitleInfo
Title
Why me?
SubTitle
reflexive practices in illness memoirs
Name (type = personal)
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Huang
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Hwa-Yen
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1981-
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Hwa-Yen Huang
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author
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Gerson
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Judith
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Judith Gerson
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chair
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Kempner
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Joanna
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Joanna Kempner
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Williams
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Richard
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Richard Williams
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Eviatar Zerubavel
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Zussman
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Robert
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Robert Zussman
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Advisory Committee
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outside member
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Rutgers University
Role
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degree grantor
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School of Graduate Studies
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school
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Text
Genre (authority = marcgt)
theses
OriginInfo
DateCreated (qualifier = exact)
2018
DateOther (qualifier = exact); (type = degree)
2018-10
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2018
Place
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xx
Language
LanguageTerm (authority = ISO639-2b); (type = code)
eng
Abstract (type = abstract)
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.
Subject (authority = RUETD)
Topic
Sociology
Subject (authority = ETD-LCSH)
Topic
Literature and mental illness
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Rutgers University Electronic Theses and Dissertations
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ETD_9324
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electronic resource
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Extent
1 online resource (215 pages) : illustrations
Note (type = degree)
Ph.D.
Note (type = bibliography)
Includes bibliographical references
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by Hwa-Yen Huang
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School of Graduate Studies Electronic Theses and Dissertations
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rucore10001600001
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Identifier (type = doi)
doi:10.7282/t3-kv49-nm94
Genre (authority = ExL-Esploro)
ETD doctoral
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The author owns the copyright to this work.
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Name
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Huang
GivenName
Hwa-Yen
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RightsEvent
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Permission or license
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2018-10-03 01:27:48
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Hwa-Yen Huang
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Rutgers University. School of Graduate Studies
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Author Agreement License
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I hereby grant to the Rutgers University Libraries and to my school the non-exclusive right to archive, reproduce and distribute my thesis or dissertation, in whole or in part, and/or my abstract, in whole or in part, in and from an electronic format, subject to the release date subsequently stipulated in this submittal form and approved by my school. I represent and stipulate that the thesis or dissertation and its abstract are my original work, that they do not infringe or violate any rights of others, and that I make these grants as the sole owner of the rights to my thesis or dissertation and its abstract. I represent that I have obtained written permissions, when necessary, from the owner(s) of each third party copyrighted matter to be included in my thesis or dissertation and will supply copies of such upon request by my school. I acknowledge that RU ETD and my school will not distribute my thesis or dissertation or its abstract if, in their reasonable judgment, they believe all such rights have not been secured. I acknowledge that I retain ownership rights to the copyright of my work. I also retain the right to use all or part of this thesis or dissertation in future works, such as articles or books.
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2018-10-31
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2020-10-30
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Access to this PDF has been restricted at the author's request. It will be publicly available after October 30th, 2020.
Copyright
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Copyright protected
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Status
Open
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2018-10-03T01:01:06
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