Purpose and objective: A good life includes opportunities to practice self-determination, to participate in and contribute to society, to have meaningful relationships, and opportunities for self-development as well as physical, emotional, and financial health and security (Verdugo et al., 2012). People labelled with an intellectual disability (PLWID) have had limited opportunities to experience these good things in life and to share their own perspectives about a good life. The purpose of this study was to learn from PLWID who face significant barriers to communication about what they most value as part of a good life. My research was situated within the sociohistorical context of the province of Ontario. My main research questions were: (1) What is a good life from the perspectives of PLWID who use various forms of augmentative and alternative forms of communication (AAC)? (2) What can we learn from past advocacy efforts? (3) What are the possibilities and limitations of participatory audio/visual methods for enabling PLWID to articulate their vision of a good life? Methods: To explore these research questions, I conducted three separate but related studies. The first study consists of six narratives of intellectual disability advocacy that has taken place in Ontario. A focus group session advised me regarding the choice of narratives to be included in the study. To conduct the second study, I adopted various research methods, including participatory audio/visual methods, inclusive research methods and narrative approaches. I facilitated a series of five workshops for five participants labelled as having an intellectual or developmental disability and facing significant barriers to communication and six supporters living in the Ottawa Region. Combining audio/visual and inclusive methods and drawing from augmentative and alternative communication (AAC), supported decision-making (SDM) and Supported Conversation for Adults with Aphasia (SCA™), participants received assistance to think about a good life. A total of 34 video vignettes communicate participants’ perspectives. Finally, to conduct the third study, I used audio/visual methods to document the participatory process of exploring a good life with participants and their supporters. Results: The results reveal that the desire for assistance to practice autonomy and the desire to contribute to shaping supports and services has been at the heart of intellectual disability advocacy efforts. Further, PLWID value participation and relationships as part of a good life. Participation in arts and sports is especially important as are relationships with family and friends. Results demonstrate that using participatory audio/visual methods combined with strategies drawn from SDM, AAC and SCA™ provide practical assistance to PLWID when thinking about and communicating their visions and ideas of the good. Conclusion and implications: The findings of this research indicate the need to continue exploring methodological approaches that facilitate the participation of PLWID and others who face barriers to communication and cognition in research and beyond. The three studies support a radically individual and relational conceptualization of autonomy and decision-making. As such, they suggest the need to rethink accepted ideas about self-determination, including reasoning and decision-making. Finally, the results support the need for individualized assistance that accommodates each person’s cognitive and communication abilities to enable meaningful participation. They also suggest the need for fundamental systemic changes that begin with practicing equality and forms of radically inclusive democracy in all our relations.

La notion d’autonomie personnelle joue un rôle central dans les théories politiques contemporaines et, plus spécifiquement, dans les théories de la justice. Or, dans le paradigme libéral dominant, elle est définie par une compréhension rationaliste de l’agent individuel. La présente étude défend la nécessité de redéfinir ce concept d’autonomie à la lumière des développements philosophiques et psychologiques qui ont complexifié notre compréhension de la subjectivité. L’emploi du concept d’autonomie relationnelle développé par certains auteurs féministes et par certains théoriciens de la reconnaissance semble pour ce faire prometteur. En passant par une critique du libéralisme politique rawlsien, cette étude cherche à montrer qu’une compréhension relationnelle de l’autonomie est nécessaire pour expliquer la motivation à la coopération sociale et pour redéfinir la justice et l’injustice de façon à ce qu’elles correspondent à l’expérience sociale vécue. / The notion of personal autonomy plays a central role in contemporary political theories and especially in theories of justice. Generally speaking, the dominant liberal paradigm defines individual agency in a purely rationalistic manner. Against this tradition, the present study argues for the necessity of rethinking and redefining this rationalistic concept of autonomy in light of psychological and philosophical developments that have complicated our understanding of subjectivity. For this purpose, the concept of relational autonomy, developed by feminist authors and some theorists of recognition, is most promising. This study proceeds via a critique of Rawlsian political liberalism, and aims to show that a relational understanding of autonomy is necessary to explain motivations for social cooperation and to understand justice and injustice in a way that corresponds to lived social experience.

Abstract This narrative research focuses on teachers’ perceptions of autonomy because of its importance to job commitment, efficiency, satisfaction, and motivation. A positive perception of autonomy relates to teachers’ feelings of competency, empowerment and professionalism. The overall importance of and desire for autonomy may be symptomatic of teachers’ reactions to obtain more, or to keep the autonomy they have. Previous studies have often depicted teacher autonomy as individualistic, comprising freedom from control. However, this research challenges the appropriateness of this conceptualisation of teacher autonomy by asking how upper-secondary school mathematics teachers perceive their autonomy in different contexts. To display contextual variations, the interviews with 15 upper-secondary school mathematics teachers from Canada and 12 from Finland were based mainly on open-ended questions. The contents of the teachers’ narratives were analysed in their whole and by comparing categories of narratives from one context to another. The findings suggest that context influences how teachers perceive their autonomy. They also reveal that trust plays a decisive role in whether teachers feel autonomous or not, that trust plays a central to the relationships teachers have at work, and that autonomy inextricably exists in relations. Consequently, this research claims that the spectrum of autonomy for teachers should be expanded beyond its current individuality, to include a broader, more relational understanding of autonomy. A core argument of this research is therefore that teacher autonomy needs to be reconceptualised as relying on contextual sensitivities and relationships. By providing a more comprehensive conceptualisation of teacher autonomy—i.e., one which is more context-sensitive and which focuses on teachers’ concerns—the findings of this research supports more empowering ways for teachers to exert a proactive influence on their own autonomy. Teachers’ perception of their autonomy is of practical and academic importance. Teachers who feel satisfied, supported, empowered and autonomous are more committed and motivated, which in turn advances better, more adaptive, and more adequate teacher education. / Tiivistelmä Tämän narratiivisen tutkimuksen kohteena ovat opettajien käsitykset autonomiasta. Ne ovat tärkeitä työhön sitoutumisen, tehokkuuden, tyytyväisyyden, ja motivaation kannalta. Myönteisellä käsityksellä autonomiasta on merkitystä opettajien tuntemuksiin pätevyydestä, voimaantumisesta ja ammattitaidosta. Autonomian arvostaminen ja tarve autonomiaan voivat kertoa opettajien halusta pitää kiinni autonomiastaan tai lisätä sen määrää. Aiempi kirjallisuus kuvaa opettajan autonomiaa yksilökeskeisenä, vapaana ulkopuolisesta kontrollista. Tämä tutkimus haastaa yksilökeskeisen näkemyksen kysymällä, miten lukion opettajat eri konteksteista kokevat autonomiansa. Kontekstuaalisten vaihtelujen tutkimista varten haastateltiin 15 lukion matematiikan opettajaa Kanadasta ja 12 lukion matematiikan opettajaa Suomesta esittämällä heille enimmäkseen avoimia kysymyksiä. Opettajien narratiivien sisällöt analysoitiin kokonaisuudessaan ja vertaamalla kategorioita kontekstien välillä. Tuloksista voidaan päätellä, että konteksti vaikuttaa merkittävästi siihen, miten opettajat kokevat autonomian. Luottamuksella on keskeinen merkitys sille, tuntevatko opettajat itsensä autonomisiksi toimijoiksi vai eivät. Lisäksi havaittiin, että luottamuksella on suuri merkitys työympäristön ihmissuhteissa, ja että autonomia on erottamaton osa näitä suhteita. Näin ollen tutkimuksen johtopäätöksissä esitetään, että autonomian käsitteen kirjoa tulisi laajentaa nykyisestä yksilökeskeisestä painotuksesta laveampaan määrittelyyn. Tämän tutkimuksen keskeinen väite on, että opettajan autonomiaa käsitteenä tulisi tarkastella uudelleen huomioimalla erilaiset kontekstit ja ihmissuhteet. Painottamalla kokonaisvaltaisempaa näkemystä opettajien autonomiasta, toisin sanoen huomioonottamalla kontekstin ja opettajien omat huolenaiheet, tämän tutkimuksen tulokset viittaavat tarpeeseen opettajien voimaannuttamisesta, jotta he voivat proaktiivisesti vaikuttaa omaan autonomiaansa Opettajien käsityksillä autonomiasta on merkitystä sekä käytännön että teorian kehittämisen näkökulmista. Työssään tyytyväinen, tuettu, voimaantunut ja itsenäinen opettaja on sitoutunut ja motivoitunut. Opettajien autonomiaan liittyvien käsitysten parempi ymmärtäminen edesauttaa opettajankoulutuksen kehittämistä.

La notion d’autonomie personnelle joue un rôle central dans les théories politiques contemporaines et, plus spécifiquement, dans les théories de la justice. Or, dans le paradigme libéral dominant, elle est définie par une compréhension rationaliste de l’agent individuel. La présente étude défend la nécessité de redéfinir ce concept d’autonomie à la lumière des développements philosophiques et psychologiques qui ont complexifié notre compréhension de la subjectivité. L’emploi du concept d’autonomie relationnelle développé par certains auteurs féministes et par certains théoriciens de la reconnaissance semble pour ce faire prometteur. En passant par une critique du libéralisme politique rawlsien, cette étude cherche à montrer qu’une compréhension relationnelle de l’autonomie est nécessaire pour expliquer la motivation à la coopération sociale et pour redéfinir la justice et l’injustice de façon à ce qu’elles correspondent à l’expérience sociale vécue. / The notion of personal autonomy plays a central role in contemporary political theories and especially in theories of justice. Generally speaking, the dominant liberal paradigm defines individual agency in a purely rationalistic manner. Against this tradition, the present study argues for the necessity of rethinking and redefining this rationalistic concept of autonomy in light of psychological and philosophical developments that have complicated our understanding of subjectivity. For this purpose, the concept of relational autonomy, developed by feminist authors and some theorists of recognition, is most promising. This study proceeds via a critique of Rawlsian political liberalism, and aims to show that a relational understanding of autonomy is necessary to explain motivations for social cooperation and to understand justice and injustice in a way that corresponds to lived social experience.

Through this study, I aim to increase understanding of how young moms experience, perceive, make meaning, and conceptualize positive support within the context of service provision (education, residential services, legal services, healthcare etc.). More broadly, I aim to illuminate ways that societal notions of vulnerability and autonomy may be shifted to offer improved quality of support to young mothers and other marginalized communities. Such a shift would counter paternalistic attitudes that have historically influenced how “support” has been imposed on young mothers. Although a full transformation would take time, we may begin to undertake the necessary work of reimagining support, gradually shifting towards the goal of building capabilities toward relational autonomy. 25 moms from diverse socio-economic backgrounds in Ontario, Canada, between the ages of 16-25 years, participated in creating visual art images and/or verbally sharing what support meant to them. I engaged in a relational approach to interaction and dialogue, centering a praxis of reflexivity and ethical treatment of everyone involved in the interview process. Guided by a critical feminist framework that included intersectionality, maternal theory, and vulnerability theory, I engaged in a feminist phenomenological approach to the analysis of transcripts and co-constructed visual analysis of imagery with the moms. Study findings reveal how service provision contexts are shaped by traditional ways of understanding vulnerability and autonomy as a binary and in opposition to one another, with an overvaluation of invulnerability. Yet young moms describe that they understand positive support as a combination of both responses to the effects of exposure to sources of vulnerability and as efforts to build autonomy in relationships with service providers, infrastructure, and broader communities of care. In addition, young moms describe positive qualities of service design and delivery, such as being non-judgemental, reliable, and sensitive, with attuned and caring interactions. The combination of these qualities can facilitate a process of internalization of positive attitudes, culminating in the development of an identity as a confident caregiver. / Dissertation / Doctor of Philosophy (PhD) / Through this critical feminist arts-based study, I aim to increase understanding of how young moms make meaning of the concept of positive support within the context of service provision. 25 moms in Ontario, Canada, between the ages of 16-25 years, participated in creating visual art images and/or verbally sharing what support meant to them. I engaged in a relational approach to interviewing, and a feminist phenomenological approach to the analysis of transcripts and visual analysis of imagery. Study findings reveal how service provision contexts are shaped by traditional ways of understanding the concepts of vulnerability and autonomy as a binary and in opposition to one another. Yet young moms asserted that effective forms of positive support must be designed and delivered as a combination of both a response to the effects of exposure to sources of vulnerability and as efforts made to build autonomy in-connection to others and the world(s) around us.

Thesis (M.A.)--Indiana University, 2009. / Department of Philosophy, Indiana University-Purdue University Indianapolis (IUPUI). Advisor(s): Peg Brand, James Capshew, Richard Gunderman, Jane E. Schultz. Includes vitae. Includes bibliographical references (leaves 117-122).

Introduction: Les incertitudes des pronostics cliniques et les dilemmes moraux associés aux technologies des tests prénataux affectent les expériences et les processus décisionnels des femmes et des couples. D’une part, la validité des normes relatives au ‘consentement autonome’ et au conseil ‘non directif’ est remise en question. D’autre part, les aides à la décision sont prônées pour rehausser la prise de décision éclairée. L’objectif de ce mémoire est de construire un modèle de l’expérience des femmes et des couples qui font face aux tests prénataux afin d’identifier les facteurs qui amélioreraient les expériences, la prise de décision et le rôle des aides à la décision et informeraient le modèle de soin. Méthodologie: La modélisation et l’analyse des expériences des femmes et des couples qui affrontent les tests prénataux reposent sur une méta-ethnographie des études qualitatives et sur une analyse narrative thématique des études quantitatives. La critique d’un outil (PT) en matière de tests prénataux est également effectuée en ayant recours aux critères de qualité de l’International Patient Decision Aid Standards (IPDAS). Résultats: Un cadre conceptuel décrivant les expériences vécues est construit et l’analyse thématique le complète en soulignant que la prise de décision n’est que rarement éclairée. Les normes d’une ‘décision autonome’ et d’un ‘conseil non directif’ sont problématiques pour les femmes. Les aides à la décision amélioraient les scores de connaissances, sans pour autant modifier la perception du risque, ni les niveaux d'anxiété. L’outil PT favorise une prise de décision basée sur les préférences, mais les critères IPDAS sont difficilement applicables et leur rôle dans une décision de qualité est incertain. Discussion et conclusion: Les résultats éclairent les facteurs macro, méso et micro pouvant améliorer les expériences vécues des femmes et des couples et affecter la prise de décision et l’utilisation des aides à la décision. Un changement de paradigme préconisant le concept d’autonomie relationnelle dans le modèle de soins est suggéré. Dans le contexte des avancées en matière de test prénataux, une réévaluation des normes de pratique et de modèles de soin est requise. Le rôle des aides à la décision devra être élucidé. / Introduction: The clinical prognostic uncertainties and moral dilemmas associated with technological advances of prenatal testing impact the experiences and decision-making of women and couples. While the validity of the norms of ‘autonomous consent’ and ‘non-directive’ counseling is being questioned, decision aids are promoted to enhance informed decision-making. The goals of this thesis are to develop a model of the experiences of women and couples in prenatal testing so as to identify factors that may improve experiences, decision-making, the role of decision aids and inform the care model. Methods: A model of the experiences of prenatal testing is developed through a meta-ethnography of qualitative studies and a narrative synthesis of the themes explored in quantitative studies. A prenatal testing (PT) decision tool is critically assessed using the International Patient Decision Aids Standards (IPDAS) quality criteria for decision aids. Results: A conceptual framework of the experiences of women and couples in prenatal diagnosis is constructed and complemented by a narrative thematic analysis showing that decision-making is rarely informed and that the norms of an ‘autonomous decision’ and a ‘non-directive’ counselling are problematic for women. Decision aids improve knowledge scores, but do no modify risk perception or anxiety levels. A PT tool increases preference based informed decision-making, but quality criteria are not always applicable and their role in quality decision-making is unclear. Discussion and conclusion: The results highlight macro, meso and micro-level factors that may improve the experiences of women and couples and inform decision-making processes as well as the use of decision aids. A paradigm shift towards the concept of relational autonomy in the prenatal diagnosis model of care is suggested. Advances in prenatal testing require a re-evaluation of the norms of practice and care model. The role of decision aids requires further elucidation.

Ce projet examine comment la politique et l’amitié sont actualisées dans la fiction spéculative du XXIe siècle à travers différents médias. Cette thèse aborde la manière dont ces relations interpersonnelles affectent la sphère sociale et le statu quo des mondes fictifs à l’étude. Pour orienter la discussion, j’utilise le concept d’autonomie relationnelle qui reconnaît l’interdépendance des individus autonomes et de la communauté en général et l’éthique du care qui environne la moralité comme étant relationnelle et contextualisée. L’utilisation conjointe de ces deux cadres me permet de discuter de la façon dont les amitiés sont propices à la participation politique. Le premier chapitre présente une discussion globale de The Handmaid’s Tale (1985) de Margaret Atwood et notamment de son influence au sein du genre de la fiction spéculative féministe. Ensuite, dans une première section, je me concentre sur les notions d’autonomie par rapport à l’adaptation graphique du roman d’Atwood par Renée Nault (2019), que je compare avec la bande dessinée Bitch Planet de Kelly Sue DeConnick et Valentine de Landro (2013-2017). Dans une seconde section, je me concentre sur l’éthique du care en tant que processus pouvant favoriser des amitiés empreintes d’implications politiques en analysant l’adaptation télévisée de The Handmaid’s Tale, produite par Hulu, et la série Orphan Black, produite par BBC America. La fiction spéculative permet d’expérimenter librement avec différentes idées politiques et de comprendre comment la société pourrait réagir dans des scénarios extrêmes. Ces expériences de pensée reflètent nos propres luttes et lacunes politiques et pourraient ultimement indiquer de meilleures façons de résoudre les problèmes actuels. / This project examines how politics and friendship are actualized in speculative fiction across different media in the twenty-first century. This thesis discusses how these interpersonal relationships affect the social sphere and the status quo of the fictional worlds in question. To guide the discussion, I use the concept of relational autonomy, which recognizes the interconnectedness of both autonomous individuals and the community at large, and ethics of care, which understands morality as relational and contextualized. I use these two frameworks in tandem to discuss how friendships are conducive to political participation. The first chapter presents an overarching discussion of Margaret Atwood's The Handmaid's Tale (1985) in its legacy to the feminist speculative fiction genre. Following, in the first section, I focus on notions of autonomy in relation to Renée Nault's graphic novel adaptation of Atwood’s novel (2019) and contrast it with Kelly Sue DeConnick and Valentine de Landro’s comic Bitch Planet (2013-2017). In the second section, I focus on the ethics of care as a process that can foster friendships with political implications by analyzing Hulu's TV adaptation of The Handmaid's Tale and BBC America's Orphan Black. SF offers the freedom to test different political ideas and to understand how society might react in extreme scenarios. These thought experiments reflect our own political struggles and shortcomings; ultimately, they might point at better ways to solve current problems.

Indiana University-Purdue University Indianapolis (IUPUI) / This project contributes to the improvement of the healing encounter between physician and patient and broadens the scope of medical ethics via application of a methodology that creatively communicates patient experience. Contemporary medical training and socialization can create emotional distance between patients and physicians, which has both positive and negative effects. A physician’s “detached concern” often renders patients’ ways of knowing irrelevant to their care. This has a negative effect on patient autonomy, trust, and the healing encounter in general. Herwaldt (2008) developed a pedagogical tool of distilling patient interviews in narrative form into “found poems,” in which the patient experience is expressed in verse; Herwaldt contends that the resulting poems hold the possibility of cultivating empathy in medical practitioners. My research extends Herwaldt’s work with a new set of ten patients currently in cancer treatment, translating their stories of illness into verse. The resulting poems have the potential to empower patients by legitimizing their narrative or experiential ways of knowing as complementary to physician perspectives and approaches to treatment. Clinical and feminist ethics are similar in their attention to case context, empathy, and legitimacy of narrative. However, there are aspects of feminist ethical theory that are not thoroughly delineated in clinical ethics—specifically, attention to power imbalances in medical structures and variations in ethical perspectives. When the poems are examined using a feminist bioethical framework, patients are empowered by expanding both the idea of justice and the principlist definition of autonomy to include the feminist conception of 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.