Thesis advisor: Juliet B. Schor / Fragrances in consumer products have become a contested topic in daily life. Workplace fragrance policies problematize fragrances, which, for many people, are normal aspects of consumer products. This mixed-method dissertation focuses on employees in a large non-industrial workplace with a fragrance-free policy. It examines employee reactions to a policy that requests behavioral changes based on claims that everyday consumption of fragranced products may be harmful to employee health. In order to develop an understanding of how and to what extent fragrances and indoor air quality are problematized in the workplace, I engage a number of different constructs from environmental and consumer sociology. The dissertation expands upon constructs of contested illness (Brown, Kroll-Smith, & Gunter, 2000; Phillimore, Moffatt, Hudson, & Downey, 2000; Shriver & Webb, 2009); framings of environments in bodies (Kroll-Smith & Kelley, 2008); lay assessments of health impacts (Burton-Jeangros, 2011; Collins, 2010; Heikkinen, Patja, & Jallinoja, 2010; O'Sullivan & Stakelum, 2004; Scammell, Senier, Darrah-Okike, Brown, & Santos, 2009) and understandings of the role of scents in social life (Largey & Watson, 1972; Low, 2006; Synnott, 1991). My findings show that a majority of participants understand fragrance impacts through an individual health frame, as an allergy, that locates the problems associated with fragrance within the bodies of specific individuals who exhibit symptoms due to fragrance exposures. While this orientation has had positive impacts on the implementation of the policy and reducing corresponding impacts on those who are Fragrance Sensitive, the degree to which fragrances have been problematized is limited by understandings of fragrance impacts as allergies. The limiting framework of fragrance sensitivity as allergy has practical efficacy because it helps employees to connect with the idea that fragrances cause health issues for some individuals. However, it also stymies assessments and connections to potential broader environmental health impacts of fragrances in part because allergens such as pollen are generally viewed as benign and only problematic to the anomalous individuals who experience reactions. Limitations of the framework are reinforced by established moral and cultural assessments of good and bad fragrances and the appropriate use of fragrances (Low, 2006; Synnott, 1991). This dissertation examines what happens when people are confronted with information that the industrial traces associated with their consumption practices - in this case wearing and using fragranced products on their bodies and in their work environments - may be contributing to negative health outcomes for their coworkers. This study is the first to analyze the social dimensions of the use of synthetic fragrances in connection to environmental health impacts in the context of everyday life. The findings have relevance for other organizations considering regulation of fragrances as well as for efforts to use health rationales to encourage changes in consumption practices. / Thesis (PhD) — Boston College, 2017. / Submitted to: Boston College. Graduate School of Arts and Sciences. / Discipline: Sociology.

Indiana University-Purdue University Indianapolis (IUPUI) / This research explores the illness experiences of women and men who received a Celiac Disease Diagnosis as an adult in addition to the impact it had on their social interactions and every-day lives. Investigation of illness experiences were conducted through the use of semi-structured interviews which explored diagnosis experiences, gendered experiences, and life style impact. Significant findings of this research indicated that there are gendered diagnosis experiences among women and men who are diagnosed with this disease. More specifically, female participants reported diagnosis experiences similar to that of a contested illness. In contrast, male participants reported diagnosis experiences that reflect a routinely defined illness. Despite these results, additional research is necessary in order to better understand gendered experiences among those who are diagnosed with Celiac Disease as an adult.

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.

Ma thèse doctorale vise à analyser la fibromyalgie en tant qu’entité prise en charge et traitée par des savoirs et des pratiques biomédicales contemporaines et localisées. Tout en prenant en considération une vision biomédicale transnationale du syndrome, mon terrain de recherche est situé dans le contexte italien. La première partie de la thèse est consacrée à l’analyse de la vision médicale de la douleur chronique sans lésion, également entendue comme la « douleur-maladie » ; elle propose aussi une analyse de la manière dont les formes douloureuses chroniques complexes sont encadrées au niveau législatif et politique dans le contexte national italien. La deuxième partie se concentre sur la fibromyalgie en tant que catégorie médicale. Un premier chapitre analyse comment en biomédecine le syndrome est encadré par un savoir scientifique transnational ; un deuxième chapitre se focalise sur les données collectées pendant la recherche ethnographique. La troisième partie de la thèse examine la construction médicale de la fibromyalgie en tant que syndrome féminin. Elle propose également, dans un deuxième chapitre, le témoignage de Marzia, une femme atteinte de fibromyalgie qui à travers son historie, en s’opposant à une interprétation purement biomédicale de la maladie, définit le syndrome en mode contrastif, changeant et imprévisible. / My PhD thesis aims to analyse the fibromyalgia syndrome understood as an entity defined by contemporary and located biomedical knowledge and practices. While a transnational biomedical vision of the syndrome is analysed, the ethnographic research field is located within the Italian context. The first chapter is focussed on biomedical theories which analyse chronic pain without organic lesions, also framed here by the concept of pain as a disease; it ends by analysing how complex chronic painful states are considered at one legislative and political level in the Italian national context. The second chapter analyses fibromyalgia syndrome seen as a biomedical category. A first section examines how the syndrome is framed by transnational biomedical scientific knowledge; the second section focuses on data collected during the ethnographic research. The third chapter is dedicated to an investigation of the medical reasons that outline fibromyalgia as a female syndrome. It also proposes, in its second section, the testimony of Marzia, a woman affected by fibromyalgia; beyond a purely biomedical interpretation of the disease, through Marzia’s story the syndrome emerges in contrastive, opposite and unpredictable ways. / La mia tesi di dottorato analizza la sindrome fibromialgica intesa come entità presa in carico e trattata da saperi e pratiche biomediche contemporanee e localizzate. Pur focalizzandomi sulla visione biomedica transnazionale della sindrome, il mio terreno di ricerca è situato all’interno del contesto nazionale italiano. La prima parte della tesi è centrata sull’analisi della visione biomedica del dolore cronico senza lesione, inquadrato qui anche nei termini di “dolore-malattia”. Essa propone anche una osservazione di come sono inquadrate nella contemporaneità forme dolorose croniche complesse a un livello più propriamente legislativo e politico all’interno del contesto italiano. La seconda parte della tesi si concentra sulla fibromialgia intesa nei termini di categoria medica. Un primo capitolo analizza come attualmente la sindrome è inquadrata attraverso un sapere scientifico transazionale; un secondo capitolo è focalizzato sui dati raccolti durante la ricerca etnografica. La terza parte della tesi esamina la costruzione medica della fibromialgia nei termini di una sindrome femminile. Propone infine la testimonianza di Marzia, una donna colpita da fibromialgia che, attraverso la sua storia e opponendosi a un’interpretazione puramente biomedica della malattia, definisce la sindrome in modo contrastante, mutevole e imprevedibile.