Une femme à risque d’un accouchement prématuré vit un enjeu de santé très éprouvant et stressant ; elle sera souvent hospitalisée pour recevoir des traitements médicaux visant à prolonger la grossesse et améliorer le pronostic du bébé. Dans ce contexte, une consultation avec un néonatalogiste est demandée. Plusieurs associations professionnelles médicales ont émis des lignes directrices sur cette consultation, insistant sur le besoin d’informer les parents au sujet des complications potentielles de la prématurité pour leur enfant. Ces recommandations s’inspirent du point de vue médical, et très peu d’études ont examiné la perspective, les attentes et les besoins des parents à risque d’un accouchement prématuré. Ce projet de thèse a pour objectif de proposer un modèle de relation médecin-patient informé de la perspective maternelle de la consultation anténatale, pour développer une approche clinique répondant à leurs besoins. Afin d’examiner cette problématique de façon complète, un travail constant de va-et-vient a été effectué entre la recension de données empiriques et une réflexion normative bioéthique féministe. Un projet de recherche empirique a d’abord permis d’explorer les attentes et le vécu de ces femmes. Les participantes espéraient recevoir plus que de l’information sur les complications de la prématurité. Elles souhaitaient que le néonatologiste soit attentif à leur situation particulière et qu’il développe une relation de confiance avec elles, leur permettant d’explorer leurs futurs rôles de mères et les encourageant à formuler leurs propres questions. Le cadre théorique féministe d’autonomie relationnelle a ensuite permis de proposer une approche de soin qui sache répondre aux besoins identifiés par les patientes, tout en adressant des enjeux de pouvoir intrinsèques à la clinique, qui influencent la santé et l’autonomie de ces femmes. Cette approche insiste sur l’importance de la relation de soin en clinique, contrastant avec un modèle encourageant une vision réductrice de l’autonomie, dans laquelle un simple transfert de données scientifiques serait équivalent au respect de la norme médicolégale du consentement éclairé. Ce modèle relationnel propose des actions concrètes et pratiques, encourageant les cliniciens à entrer en relation avec chaque patiente et à considérer l’influence qu’ils exercent sur l’autonomie relationnelle de leurs patientes. / Women at risk of preterm labour experience a highly stressful situation for which they are often hospitalised to receive the medical care required to delay their baby’s birth or to improve his outcome. Professional medical associations have published guidelines encouraging consultations with a neonatologist in these contexts. These emphasize informing parents about prematurity’s potential complications and outcomes. However, they are based on expert medical opinions, and little is known about parents’ perspectives of the antenatal consultation for preterm labour. This thesis proposes to elaborate a clinical model of a physician-patient relationship, grounded in mothers’ experiences and expectations from the antenatal consultation for preterm labour. In order to offer a comprehensive analysis of this clinical and ethical issue, both empirical data and a normative feminist bioethical framework were used. An empirical quantitative research project was first conducted to explore women’s experiences and their expectations regarding the antenatal consultation. Participants hoped to receive more than information from the antenatal consultation for preterm labour. Indeed, they hoped the neonatologist would strive to understand their unique and distinctive situations. They wanted the physician to develop trusting relationships, in which they would be enabled to ask questions important to them and in which many topics could be discussed – such as their roles as mothers of a premature baby. A feminist theory of relational autonomy was then used to examine this data. An approach to care responsive to women’s experiences is suggested, which considers not only their individual needs, but which is also critical of the many power imbalances inherent to the clinical setting that influence patients’ health and autonomy. This approach emphasizes the importance of relationships in the physician-patient encounter; it offers a striking contrast to consultation models that endorse a minimal conception of patient autonomy, in which the simple transfer of medical knowledge and data is believed to uphold the legal doctrine of informed consent. This relational model suggests practical and tangible means for physicians to engage in relationships with their patients and to consider the influence they have on their patients’ relational autonomy.

Cette recherche s’intéresse au soutien à domicile des personnes âgées dites « en perte d’autonomie » dans un contexte où, d’une part, les inégalités socioéconomiques parmi ce groupe sont marquées et, d’autre part, les services à domicile tendent vers une standardisation et une marchandisation. L’autonomie a été mobilisée comme concept pour mieux appréhender les conditions de vie et les rapports sociaux qui nuisent ou contribuent au bien-être des aînés à domicile, de leur propre point de vue et de celui des auxiliaires familiaux et sociaux qui interviennent auprès d’eux. Ce groupe d’acteurs est généralement évoqué dans la littérature comme ayant une vision sociale et globale des personnes qu’ils visitent, de par leur proximité et intrusion dans l’espace de vie de ces dernières. Le discours dominant par rapport au bien-être des personnes âgées (bien-vieillir ou, en anglais, successful aging) dans la littérature en gérontologie ou dans les documents institutionnels s’articule autour d’une conception fonctionnelle de l’autonomie, au détriment des dimensions plus sociales et relationnelles. Cette recherche a ainsi cherché à investir une perspective sociorelationnelle de l’autonomie, qui se retrouve en sciences sociales chez des auteurs tels que Druhle, Sen, McAll, Honneth, Guillemard et Castoriadis. Ce cadre conceptuel au cœur duquel se trouvent notamment les notions de reconnaissance et de rapports sociaux inégalitaires a servi de porte d’entrée pour analyser 10 entrevues semi-dirigées avec des auxiliaires familiaux et sociaux (qui ont évoqué, chacun, la situation des trois dernières personnes visitées, pour un total de 30 exemples de cas) et 14 entrevues semi-dirigées avec des personnes âgées recevant des services à domicile. Au croisement de ces regards, les résultats de cette recherche suggèrent que les conditions de vie matérielles et relationnelles ont un impact déterminant sur la possibilité pour les aînés de « se sentir vivants » et que pour les personnes les plus défavorisées et/ou isolées, le soutien à domicile se traduit le plus souvent en une situation de « confinement », de « maintien » à domicile. Par rapport à la relation avec les auxiliaires, il apparaît que l’amélioration du bien-être des aînés recevant de l’aide à domicile passe, entre autres, par la création d’un espace relationnel autonome dans lequel la personne existe non seulement comme « corps », mais également comme « esprit ». Par-delà des services offerts, c’est ce type d’interaction (attentif et respectueux des habitudes, intentions et projets qui ont rempli la vie des personnes aidées) qui retient le plus leur attention et mobilise l’essentiel de leur discours sur le soutien à domicile. Il semble également que ce soit parfois en se faisant marginal dans la vie des gens et en créant simplement des espaces favorables à une autonomie collective que le réseau de services peut avoir les impacts les plus positifs sur les personnes, de leur propre point de vue. / This study aims to explore the elder’s home support, more narrowly the experience of people characterized as « in loss of autonomy » in a context where, on one hand, socioeconomic inequalities in this group are important, and, on the other hand, home support services tend toward a standardization and a commoditization. The concept of autonomy has been used to better apprehend the living conditions and the social relations that positively or negatively affect the wellbeing of elders at home, from their own perspective or from those of the visiting caregivers who work with them. The latter are generally mentioned in the literature has having a social and global perspective on the people they visit, as they are closely tied to them and intrude in their own living space. In the gerontology literature and in institutional documents, the dominant discourse related to wellbeing of the elderly (« successful aging » or, in French, « bien-vieillir ») is articulated around a functional conception of autonomy, depriving it of its more social and relational dimensions. This research has developed a social perspective on autonomy grounded in social sciences and based on authors such as Druhle, Sen, McAll, Honneth, Guillemard and Castoriadis. This conceptual framework relies on notions of recognition and social inequality and was used in analyzing our 10 semistructured interviews with caregivers and 14 more with elders receiving homecare. Each of the 10 caregivers were asked to relate their last three visits, adding up to a total of 30 case studies. At the crossroads of these narratives, the results of this research suggest that material and relational living conditions do have a decisive impact on elders’ possibility to « feel alive ». For those most disadvantaged and/or isolated, home support most often translates in situations of containment, of retention at home. With regards to relationships with caregivers, it appears that improvement of elders’ wellbeing receiving home support is related, among other things, to the creation of autonomous relational space where the person exists not only as a « body » with needs, but also as a « spirit ». Beyond the provided services, it is the kind of interaction (careful, mindful, respectful of habits, intentions and projects that fulfill the life of the assisted individuals), that occupies most of their narrative on home care services. According to the elders, from time to time, it seems that the health care system can have more significant positive impact by creating spaces propitious to collective autonomy and with marginal intervention.

Living Disability: Ways Forward from Decontextual Models of Disability consists of six articles that provide both theoretical and pragmatic commentaries on decontextual approaches to vulnerability and disability. In What Contemporary Models of Disability Miss: The Case for a Phenomenological Hermeneutic Analysis I argue many commonly accepted models for understanding disability use a vertical method in which disability is defined as a category into which people are slotted based on whether or not they fit its definitional criteria. This method inevitably homogenizes the experiences of disabled people. A hermeneutic investigation of commonly accepted models for understanding disability will provide an epistemological tool to critique and to augment contemporary models of disability. In A Phenomenological Hermeneutic Resolution to the Principlist- Narrative Bioethics Debate Narrative, I note narrative approaches to bioethics and principlist approaches to bioethics have often been presented in fundamental opposition to each other. I argue that a phenomenological hermeneutic approach to the debate finds a compromise between both positions that maintains what is valuable in each of them. Justifying an Adequate Response to the Vulnerable Other examines the possibility of endorsing the position that I, as a moral agent, ought to do my best to respond adequately to the other’s vulnerability. I contend that, insofar as I value my personal identity, it is consistent to work toward responding adequately to the vulnerability of the other both ontologically and ethically. Who Can Make a Yes?: Disability, Gender, Sexual Consent and ‘Yes Means Yes’ examines the ‘yes means yes’ model of sexual consent, and the political and ethical commitments that underpin this model, noting three fundamental Ph.D. Thesis – C. Kavanagh; McMaster University - Philosophy v disadvantages. This position unfairly polices the sexual expression of participants, particularly vulnerable participants such as disabled people, it demands an unreasonably high standard for defining sexual interaction as consensual, and allows perpetrators of sexual violence to define consent. In Craving Sameness, Accepting Difference: The Possibility of Solidarity and Social Justice I note realist accounts typically define solidarity on the basis of a static feature of human nature. We stand in solidarity with some other person, or group of people, because we share important features in common. In opposition to such realist accounts, Richard Rorty defines solidarity as a practical tool, within which there is always an ‘us’, with whom we stand in solidarity, and a ‘them’, with whom we are contrasted. I argue that by understanding Rorty’s pragmatic solidarity in terms of the relational view of solidarity offered by Alexis Shotwell, it is possible to conceptualise solidarity in a manner that allows for extending the boundaries of the community with whom we stand in solidarity. In Translating Non-Human Actors I examine Bruno Latour’s position that nonhuman things can be made to leave interpretable statements, and have a place in democracy. With the right types of mediators, the scientist can translate for non-humans, and those voices will allow for nonhuman political representation. I wish to suggest that, like scientists, people with disabilities are particularly capable of building networks that facilitate translation between humans and non-humans. / Thesis / Doctor of Philosophy (PhD) / Living Disability: Ways Forward from Decontextual Models of Disability consists of six separate articles that provide both theoretical and pragmatic commentaries on decontextual approaches to vulnerability and disability. The first three articles examine contemporary approaches to understanding vulnerability and disability, and explore what a contextual theoretical approach, one that puts the experiences of people with disabilities at the centre, might look like. The second three articles provide a bioethical examination of practical ethical questions associated with the treatment of people with disabilities when it comes to social and political positions on disability and sexuality, solidarity with people with disabilities, and the relationship between people with disabilities and objects.