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Thesis (M.S.P.H.)--University of South Florida, 2009. / Title from PDF of title page. Document formatted into pages; contains 68 pages. Includes bibliographical references.

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<p>Purpose: The purpose of the present study was to illuminate how individuals living with SHR, experience its impact on accessibility, financial security and social relationships.</p><p>Method: A qualitative approach was used. The participants were recruited by advertising on the website for “The network for people with odor intolerance”. The data was collected by written descritive texts from the participants and analysed with qualitative content analysis.</p><p>Results: The results showed that the informants experienced an extensive lack of accessibility in society. It was difficult to move around in society, to visit public buildings and facilities and it was almost impossible to find a suitable place to live. Regarding financial security they had a reduced income due to difficulties to earn their living in combination with increased expenses because of the disease and they had difficulties to get the support they needed from authorities. This created an insecure financial situation. Further, the findings showed that their social relationships had been affected. Socializing with others had become hard and troublesome, they had become limited in doing social activities and they got support from some but these persons became limited. Six themes permeated the categories in all three content areas: “Being limited”, “Being forced to behave incompatible with your true personality”, “Experiencing a lack of understanding and respect from others”, “Experiencing insecurity”, “Being dependent on others” and “Being forced to choose between the plague and cholera”. <strong></strong></p> / <p>Syfte: Syftet med denna studie var att belysa hur individer som lever med sensorisk hyperreaktivitet (SHR) upplever dess påverkan på tillgänglighet, ekonomisk trygghet och sociala relationer.</p><p>Metod: Kvalitativ metod användes och deltagarna rekryterades via Internet genom annonsering på nätverket för doftöverkänsligas hemsida. Datainsamlingen skedde genom skrivna berättelser från deltagarna och data analyserades sedan med kvalitativ innehållsanalys.</p><p>Resultat: Resultatet visade att informanterna upplevde en omfattande brist på tillgänglighet i samhället. Det var svårt att röra sig i samhället, att besöka offentliga lokaler och inrättningar samt att det var nästan omöjligt att hitta en lämplig bostad. Deras ekonomiska trygghet var påverkad genom att de hade minskad inkomst på grund av svårigheter att försörja sig i kombination med ökade utgifter orsakade av sjukdomen samt att de hade svårigheter att få det stöd de behövde från myndigheter. Detta skapade en otrygg ekonomisk situation. Deras sociala relationer hade blivit påverkade av sjukdomen. Att umgås med andra hade blivit jobbigt och besvärligt, deras sociala aktiviteter hade blivit begränsade och de fick stöd av vissa men dessa personer blev då begränsade. Sex teman genomsyrade kategorierna i alla tre innehållsområdena: "Vara begränsad", "Vara tvungen att bete sig oförenligt med sin rätta personlighet", "Uppleva brist på förståelse och respekt från andra", "Uppleva otrygghet", "Vara beroende av andra" och "Vara tvungen att välja mellan pest eller kolera"</p>

Purpose: The purpose of the present study was to illuminate how individuals living with SHR, experience its impact on accessibility, financial security and social relationships. Method: A qualitative approach was used. The participants were recruited by advertising on the website for “The network for people with odor intolerance”. The data was collected by written descritive texts from the participants and analysed with qualitative content analysis. Results: The results showed that the informants experienced an extensive lack of accessibility in society. It was difficult to move around in society, to visit public buildings and facilities and it was almost impossible to find a suitable place to live. Regarding financial security they had a reduced income due to difficulties to earn their living in combination with increased expenses because of the disease and they had difficulties to get the support they needed from authorities. This created an insecure financial situation. Further, the findings showed that their social relationships had been affected. Socializing with others had become hard and troublesome, they had become limited in doing social activities and they got support from some but these persons became limited. Six themes permeated the categories in all three content areas: “Being limited”, “Being forced to behave incompatible with your true personality”, “Experiencing a lack of understanding and respect from others”, “Experiencing insecurity”, “Being dependent on others” and “Being forced to choose between the plague and cholera”. / Syfte: Syftet med denna studie var att belysa hur individer som lever med sensorisk hyperreaktivitet (SHR) upplever dess påverkan på tillgänglighet, ekonomisk trygghet och sociala relationer. Metod: Kvalitativ metod användes och deltagarna rekryterades via Internet genom annonsering på nätverket för doftöverkänsligas hemsida. Datainsamlingen skedde genom skrivna berättelser från deltagarna och data analyserades sedan med kvalitativ innehållsanalys. Resultat: Resultatet visade att informanterna upplevde en omfattande brist på tillgänglighet i samhället. Det var svårt att röra sig i samhället, att besöka offentliga lokaler och inrättningar samt att det var nästan omöjligt att hitta en lämplig bostad. Deras ekonomiska trygghet var påverkad genom att de hade minskad inkomst på grund av svårigheter att försörja sig i kombination med ökade utgifter orsakade av sjukdomen samt att de hade svårigheter att få det stöd de behövde från myndigheter. Detta skapade en otrygg ekonomisk situation. Deras sociala relationer hade blivit påverkade av sjukdomen. Att umgås med andra hade blivit jobbigt och besvärligt, deras sociala aktiviteter hade blivit begränsade och de fick stöd av vissa men dessa personer blev då begränsade. Sex teman genomsyrade kategorierna i alla tre innehållsområdena: "Vara begränsad", "Vara tvungen att bete sig oförenligt med sin rätta personlighet", "Uppleva brist på förståelse och respekt från andra", "Uppleva otrygghet", "Vara beroende av andra" och "Vara tvungen att välja mellan pest eller kolera"

For people who live with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome, Fibromyalgia and Multiple Chemical Sensitivity syndrome illness is a hidden construct. The body does not display the chronicity of the internal experience. This thesis removes the barrier between what is experienced and what is visible by creating visual means of communicating the body’s hidden experience. The place of the viewer is part of this discussion. Through visual methods digital photographic techniques and the current interest in sensory anthropology the embodied sensory chronic illness experience is explored. The hidden experiences were made visual creating “MeBoxes” and masks which showed both the external and embodied internal experiences of chronic illness. As the process of working with and walking beside the participants developed, I found that the discourse on imaging within the literature was inadequate to show the real lived experiences of those with chronic illness. My interactions with the people of this thesis and the process of honouring their experiences required a model that would encourage the viewer to new and perhaps unrealised depths of participation to understand the participant’s multi-faceted and multi-layered experiences. Part of the discussion is the ability of images to communicate sensory experience as is the case with Munch’s The Scream and Picasso’s Guernica. Through the use of a hypertextual self-scape I show how participants created access to their experiences through their visual representations and through a collaborative approach became composite hypertextual self-scape metaphors.

For people who live with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome, Fibromyalgia and Multiple Chemical Sensitivity syndrome illness is a hidden construct. The body does not display the chronicity of the internal experience. This thesis removes the barrier between what is experienced and what is visible by creating visual means of communicating the body’s hidden experience. The place of the viewer is part of this discussion. Through visual methods digital photographic techniques and the current interest in sensory anthropology the embodied sensory chronic illness experience is explored. The hidden experiences were made visual creating “MeBoxes” and masks which showed both the external and embodied internal experiences of chronic illness. As the process of working with and walking beside the participants developed, I found that the discourse on imaging within the literature was inadequate to show the real lived experiences of those with chronic illness. My interactions with the people of this thesis and the process of honouring their experiences required a model that would encourage the viewer to new and perhaps unrealised depths of participation to understand the participant’s multi-faceted and multi-layered experiences. Part of the discussion is the ability of images to communicate sensory experience as is the case with Munch’s The Scream and Picasso’s Guernica. Through the use of a hypertextual self-scape I show how participants created access to their experiences through their visual representations and through a collaborative approach became composite hypertextual self-scape metaphors.

For people who live with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome, Fibromyalgia and Multiple Chemical Sensitivity syndrome illness is a hidden construct. The body does not display the chronicity of the internal experience. This thesis removes the barrier between what is experienced and what is visible by creating visual means of communicating the body’s hidden experience. The place of the viewer is part of this discussion. Through visual methods digital photographic techniques and the current interest in sensory anthropology the embodied sensory chronic illness experience is explored. The hidden experiences were made visual creating “MeBoxes” and masks which showed both the external and embodied internal experiences of chronic illness. As the process of working with and walking beside the participants developed, I found that the discourse on imaging within the literature was inadequate to show the real lived experiences of those with chronic illness. My interactions with the people of this thesis and the process of honouring their experiences required a model that would encourage the viewer to new and perhaps unrealised depths of participation to understand the participant’s multi-faceted and multi-layered experiences. Part of the discussion is the ability of images to communicate sensory experience as is the case with Munch’s The Scream and Picasso’s Guernica. Through the use of a hypertextual self-scape I show how participants created access to their experiences through their visual representations and through a collaborative approach became composite hypertextual self-scape metaphors.

This is a thesis about anti-paternalism – the liberal doctrine that we may not interfere with a person’s liberty for her own good. Empirical circumstances and moral values may certainly give us reason to avoid benevolent interference. Anti-paternalism as a normative doctrine should, however, be rejected. Essay I concerns the definitions of paternalism and anti-paternalism. It is argued that only a definition of paternalism in terms of compound reason-actions can accommodate its special moral properties. Definitions in terms of actions, common in the literature, cannot. It is argued, furthermore, that in specifying the reason-actions in further detail, the notion of what is self-regarding, as opposed to other-regarding, is irrelevant, contrary to received opinion. Essay II starts out with the definition of paternalism defended in essay I and claims that however this very general definition is specified, anti-paternalism is unreasonable and should be rejected. Anti-paternalism is the position that certain reasons – referring one way or the other to the good of a person, give no valid normative support to certain actions – some kind of interferences with the same person. Since the reasons in question are normally quite legitimate and important reasons for action, a convincing argument for anti-paternalism must explain why they are invalid in cases of interference. A closer look at the reasons and actions in question provides no basis for such an explanation. Essay III considers a concrete case of benevolent interference – the withholding of information concerning uncertain threats to public health in the public’s best interest. Such a policy has been suggested in relation to the European Commission’s proposed new system for the Registration, Evaluation, and Authorisation of Chemicals (REACH). Information about uncertain threats to health from chemicals would allegedly spread anxiety and depression and thus do more harm than good. The avoidance of negative health effects is accepted as a legitimate and good reason for withholding of information, thus respecting the conclusion of essay II, that anti-paternalism should be rejected. Other reasons, however, tip the balance in favour of making the information available. These reasons include the net effects on knowledge, psychological effects, effects on private decisions and effects on political decisions. / QC 20101115

Depuis une décennie se rencontrent de plus en plus nombreux des malades d'un genre particulier. Présentant des symptômes variés et souvent invalidants, ils en attribuent la responsabilité à des facteurs environnementaux très spécifiques : produits de la chimie de synthèse pour les personnes hypersensibles chimiques multiples (MCS), rayonnements électromagnétiques artificiels pour les personnes électro-hypersensibles (EHS). La définition, l'existence même de ces maladies font l'objet de controverses autant politiques que scientifiques, que la littérature sociologique a déjà bien décrites. L'expérience de leurs victimes est en revanche peu connue – ce à quoi cette recherche propose de remédier, en s'interrogeant sur ce que signifie concrètement le fait de souffrir d'une hypersensibilité environnementale.Quatre manières de répondre à cette question seront explorées. La première renvoie à l'expérience de l'hypersensibilité, à ses manifestations symptomatiques ressenties dans l'évidence simultanée de leur corporéité et de leur origine environnementale. La seconde recouvre le raisonnement étiologique grâce auquel cette origine est reconnue et crédibilisée. La troisième a trait aux stratégies que les hypersensibles déploient contre leur mal, qui s'inscrivent dans le double registre du soin et de la mise à distance. Enfin, dernière dimension de leur expérience : la profonde transformation des rapports sociaux qu'entraîne le fait de souffrir d'une maladie controversée. Il s'agira d'étudier comment ces quatre dimensions se nouent, à l'aide d'une démarche ethnographique et inductive. / For about two decades, the number of people claiming to suffer from multiple chemical sensitivity or electromagnetic hypersensitivity has been steadily increasing in France.T hese persons experience various and sometimes quite disabling somatic symptoms, which they attribute to exposure either to chemicals or to anthropogenic electromagnetic fields. The definition, and even the existence of these diseases are controversial. They are not legally recognized and their victims resort to self-diagnosis. However, this is not a cognitively easy task. Its implications are also far-reaching: it results in a radical change in their views of themselves, their environment and their community, as well as significant alterations in their daily lives and behaviour. It is thus an interesting phenomenon to explain for a cognitive sociology concerned with how mental representations evolve and influence conduct. Such is the purpose of this thesis. The analysis relies mostly on ethnographic materials and is conducted in a comprehensive and ecological perspective. It falls into three stages. The first one is devoted to an exploration of the controversies aroused by environmental sensitivities, so as to clarify their lack of legitimacy. The second one deals with the subjective experience and biographical trajectories of environmentally sensitive persons. The last one tries to explain the appearance and persistence of their conviction that they are hypersensitive with a utilitarian model in which emotions play a prominent role. To conclude, a comparison is outlined with other epidemics of medically unexplained symptoms.