The thesis explores the ethical questions underlying important contemporary debates about how society should respond to autism; whether autism is 'disease', 'disability' or 'difference', and whether it requires 'treatment' or 'acceptance'. Part 1 comprises a historical overview of how knowledge about autism has evolved through the perspective of contrasting stakeholders – clinicians and researchers, parents, professionals, the neuro-diversity movement. It reviews the main areas of academic ethical discussion to date with regard to autism, and proposes a new analytic framework – structured in terms of six 'categories of intervention': from pre-conceptual measures to post-birth interventions targeted towards infants and adults, and from individuals through to wider societal measures. Part 2 then conducts an ethical analysis using this framework. Examples are offered at each stage of intervention, along with a discussion of the ethical questions posed at each one. Part 3 reflects on the questions to which Part 2 has given rise, addressing the way ethical positions on how to respond to autism rely on wider views about quality of life and wellbeing; parental virtues; the impact of local decisions on wider states of affairs (the Big Conundrum); and views on "where autism sits" in comparison with other conditions (the Analogy Challenge). It is argued that to conflate autism and suffering is to fail to do justice to extreme variations among autistic people, and disguises the extent to which external barriers may be the main obstacles to flourishing for autistic people and their families. The real-life conditions in which autistic people and their families struggle for recognition and support are therefore held to be of crucial significance for making both global and localised ethical judgements. It is therefore concluded that cure and/or prevention are not morally defensible as global targets for autism as a whole, but should be clearly distinguished from the ethical importance of supportive and therapeutic interventions to address particular problems that autistic individuals may have. The implications, for research and practice, are spelled out, with particular emphasis on the need for further dialogue among all stakeholders.

Social policy in individual EU countries are different, but at it's core based on the sharing of basic, social and human values. Based on the level of state involvement in social practice to differentate free respectively four ideal types of social policy defined by Esping-Andersen. There are specific indicators such as economic growth, unemployment rate or the level of social expenditure, which can identify different types and distinguish between the level of state particition. The aim of my work is to analyze the European social model and social behavior of states distinguished by thedifferent models they use (Sweden, Germany, Great Britain and Spain). Defined by the European social model, at a certain abstraction of identifying the essential characteristics of social policy in seleted European countries in order to determine which intellectual concept in the typology of social policy is the closest.

The aim of this study is to explore disability issues in the Kuwaiti context through a participatory research project with disabled people. Six disabled people participated in this project as co-researchers, and a further eight informants (disabled and non-disabled) contributed to this research as research participants. The thesis initially provides a critical exploration of the dominant conceptualisations of disability, such as the individual and social models and also includes cultural perspectives. The individual model provides an exploration of disability at the biological level, while the social model analyses disability at the socio-economic level (Bhaskar and Danermark, 2006). Cultural perspectives of disability provide an exploration of disability at the socio-cultural level (Danermark and Gellerstedt, 2004).After this exploration, and in relation to the experiences of the co-researchers, the thesis proposes that each of these singular perspectives can only provide limited conceptual effectiveness. The study then goes on to suggest that, rather than reducing the 'problem' of disability to one limited explanation, it is more productive to take an overarching, and more complex and interactional approach to disability that combines the best aspects of individual and social models as well as cultural and societal perspectives. The findings explore a number of disability issues at different levels. The analysis of the discussions with the co-researchers and interviews with the participants of this study emphasise a number of disability issues related to both the body and society. In relation to the body, both the co-researchers and the participants highlight issues and experiences related to the role of impairment in restricting activity, while at the same time acknowledging the roles of society and culture that play a part in disablement. The findings show the complexity of the understandings of disability and challenge the individual model, the social model and cultural perspectives of disability, and show how 'impairment' and 'disability' interact in the lives of disabled people in Kuwait. The thesis argues that an appropriate model for understanding disability in Kuwait is rooted in a critical realist paradigm that views disability from multiple levels, including biological, medical, psychological, socio-cultural and socio-economic levels. The findings also explore the process of participatory research with the co- researchers. In relation to this, the findings highlight the issues of power relations, skills development and reciprocity, decision making processes, sharing the experiences, and the possibility of this research opening the door for further research and changing people's attitudes on disability.

Submitted by Maria Aparecida (cidazen@gmail.com) on 2017-04-26T14:41:03Z No. of bitstreams: 1 Denisson Gonçalves.pdf: 2137540 bytes, checksum: 6d45b85c224614c1d0ac06f3d7d37728 (MD5) / Made available in DSpace on 2017-04-26T14:41:03Z (GMT). No. of bitstreams: 1 Denisson Gonçalves.pdf: 2137540 bytes, checksum: 6d45b85c224614c1d0ac06f3d7d37728 (MD5) Previous issue date: 2017-02-09 / Nowadays, the deficiency is a multidimensional thematic, approached by the most various areas of the Science, from the spheres of health, like medicine, to Social Sciences, such as Law and Politics. However, this plurivision is something recent, so that until the middle of the 21st century a purely biomedical perspective of the phenomenon of disability prevailed in a hegemonic way, considering it as pathology. The social model of disability emerges as an innovative paradigm, defining disability as the livingness in bodies with impairments in environments with barriers. In these terms, it becomes part of human diversity, not a stigma. In spite of this interpretative revolution, the deficiency is still governed by common standards, by charitable attitudes or even relegated to social invisibility. The Brazilian Law contains a vast number of protective norms for people with disabilities, however, they need enforcement. This misfortune is due in part to the lack of studies on this topic from a legal perspective. Furthermore, even within the sociology of health, the social model is still poorly diffused. Therefore, the objective of this work is to analyze the social model of disability from a Law perspective, showing "if" and "how" the internal legal system is adopting such archetype. The methodology used was the analysis of the content of national and international decisions and legislations, as well as the bibliographic review about the disability. The results found in this study show that the Brazilian State has a mechanism to enforce the rights of people with functional diversity, though, obstacles, such as invisibility, prejudice and socioinstitutional disengagement represent environmental barriers that generate and promote the exclusion of the disabled. / Hodiernamente, a deficiência é uma temática multidimensional, podendo ser abordada pelas mais variadas áreas da Ciência, desde as esferas da saúde, como a medicina, até as Ciências Sociais, como o Direito e Política. Entretanto, esta plurivisão é algo recente, de maneira que até meados do século XXI prevalecia de modo hegemônico uma perspectiva puramente biomédica do fenômeno da deficiência, considerando-a como uma patologia. O modelo social da deficiência surge como um paradigma inovador, definindo deficiência como a vivência em corpos com impedimentos em ambientes com barreiras. Neste sentido, ela se torna parte da diversidade humana e não um estigma. Apesar dessa revolução interpretativa, a deficiência ainda é governada pelos ditames do senso comum, por posturas caritativas ou mesmo relegada à invisibilidade social. O Direito brasileiro contém um amplo rol de normas protetivas das pessoas com deficiência, que contudo, carecem de densificação. Essa mazela deve-se em parte a carência de estudos sobre a temática pela ótica jurídica. Ademais, mesmo no âmbito da sociologia da saúde, o modelo social ainda é pouco difundido. Portanto, o objetivo deste trabalho é analisar o modelo social da deficiência pela perspectiva do Direito, demonstrando “se” e “como” o ordenamento jurídico interno está adotando tal arquétipo. A metodologia utilizada foi a análise de conteúdo de decisões e legislações nacionais e internacionais, bem como a revisão bibliográfica sobre a deficiência. Os resultados encontrados demonstram que o Estado brasileiro dispõe de mecanismo de efetivação dos direitos das pessoas com diversidade funcional, todavia, óbices, como a invisibilidade, preconceito e descomprometimento socioinstitucional representam barreiras ambientais que geram e promovem a exclusão dos deficientes.

<p>The more geneticists discover about which genes cause what traits, the more medical practitioners as well as ethicists will have to deal with questions such as which of the myriad of identifiable conditions could or should be allowed for preimplantation genetic diagnosis (PGD) and subsequent implantation via in vitro fertilization. Not a lot of controversy seems to be raised when it comes to performing PGD for serious genetic conditions such as Tay-Sachs disease or Lesch-Nyhan syndrome, but what about other characteristics, for example, those which we normally would call disabilities? This thesis tackles this question, and in partifular the possibility of implanting embryos with that screen positive for deafness, as deaf parents, especially those coming from the Deaf community who see their condition as a positive part of their identity and cultural belongingness, have expressed interest in ensuring the birth of a deaf child. This thesis thus raises the questions: is deafness a disease, or just an unfortunate condition? Are the deaf justified in purposefully implanting a baby diagnosed to be deaf? The thesis tries to grapple with why deaf parents may want deaf children, and show how these wishes may be justified. Concluding that neither the medical model of disease nor the principle-based approach—which weighs beneficence, nonmaleficence, autonomy and justice—are sufficient in opposing the implantation of deaf babies, it is proposed that a different theory, model or philosophy of health should be espoused if we are still to find the implantation of deaf babies problematic. That is, while the mainstream may ask: “Why ensure the birth of a deaf child?”, we ask, “Why not?” Policymakers and ethicists must be able to tackle this question sufficiently if they would allow to screen for deafness, but only to ensure the birth of hearing children.</p>

<p>This paper has two aims. The first aim is to study and describe the manifest ideology of the EU's social policy. The second aim is to analyse to what extent the manifest ideology might be a part of building a common European identity - by finding common solutions to commonEuropean problems (problems, more or less constructed as common). The research is a critical ideology analysis, made up of a qualitative text analysis of EU social policy documents and National strategy reports (NSR). I ask two questions. Firstly, which are the main features in the manifest ideology of EU social policy as described in the texts? Secondly, what picture of a European identity is visible when reading the EU social policy texts and the National Strategy Reports? I have found five main features of the manifest ideology. These revolve around: how the world and change in the world are described according to the EU; the mutual interaction between the Lisbon objectives and greater social cohesion; the creating of social cohesion; the importance of how policies are constructed and implemented and the EU's self-image. The texts offer either two quite different pictures with regards to the question of a European identity or ones that is partly incoherent. The analysed EU policy texts put across a picture of a uniform Europe, suggest that there is something genuinely European and a common European identity. However, the picture obtained when reading the NSRs and the collected picture of the EU policy texts and the NSRs is much less coherent. The paper argues that the manifest ideology could be a part of building a European identity, but it does not manage to prove that it actually is.</p>

The more geneticists discover about which genes cause what traits, the more medical practitioners as well as ethicists will have to deal with questions such as which of the myriad of identifiable conditions could or should be allowed for preimplantation genetic diagnosis (PGD) and subsequent implantation via in vitro fertilization. Not a lot of controversy seems to be raised when it comes to performing PGD for serious genetic conditions such as Tay-Sachs disease or Lesch-Nyhan syndrome, but what about other characteristics, for example, those which we normally would call disabilities? This thesis tackles this question, and in partifular the possibility of implanting embryos with that screen positive for deafness, as deaf parents, especially those coming from the Deaf community who see their condition as a positive part of their identity and cultural belongingness, have expressed interest in ensuring the birth of a deaf child. This thesis thus raises the questions: is deafness a disease, or just an unfortunate condition? Are the deaf justified in purposefully implanting a baby diagnosed to be deaf? The thesis tries to grapple with why deaf parents may want deaf children, and show how these wishes may be justified. Concluding that neither the medical model of disease nor the principle-based approach—which weighs beneficence, nonmaleficence, autonomy and justice—are sufficient in opposing the implantation of deaf babies, it is proposed that a different theory, model or philosophy of health should be espoused if we are still to find the implantation of deaf babies problematic. That is, while the mainstream may ask: “Why ensure the birth of a deaf child?”, we ask, “Why not?” Policymakers and ethicists must be able to tackle this question sufficiently if they would allow to screen for deafness, but only to ensure the birth of hearing children.

This research examined notions of belonging and sense of community through a set of layered lenses that integrated a social model of aging with phenomenology to gain a better understanding of the lived experiences of individuals residing in a long-term care (LTC) home. Conducted in a for-profit LTC home in Ontario, this study analyzed messaging in marketing materials supplied to potential residents and their families in anticipation of a move to a LTC home and in the staff policies and procedures manuals using document and narrative analysis. Themes emerging from this phase were then compared with the first-hand experiences of living in a LTC home as told by residents through the use of a focus group (n=6) and individual interviews (n=6) and experiences of working in a LTC home as described by interviews with staff (n=6). Analysis of marketing documents revealed the theme of let us be your caring community. As messaged in these documents, the LTC home supported residents by caring, embodying the ideals of home through natural living spaces, and supporting meaningful personal connections. This contrasted with messages found in the staff policy manuals. Divided discourses highlighted the tangible complexities of implementing a person-centered philosophy within a business model by describing the industry of care, prescribed customer service, fabricating normalcy and, to a much lesser extent, promoting the practice of person-centered care. Residents’ phenomenological stories illustrated variable un/belonging within a LTC home. Personal experiences of the institutional erosion of belonging, congregate nature of living in a LTC home, changing nature of personal relationships and the prescriptive living environment routinized day-to-day experiences and provided a stark contrast between belonging in community and un/belonging in a LTC home. Weaving belonging into daily tasks described how staff members laboured daily at working to personalize LTC home living, and how they were helpless to prevent losses in community and belonging. After completing the research and analysis of the promotional materials, policy and procedures manuals, and resident and staff transcripts I conducted a broader level analysis of all four sets of themes in order to get a sense of the whole. I concluded there were five tensions of: constructing home from the outside; person-centered care within a biomedical, business model; promoting individuality in a congregate structure; synthetic connections at the expense of long-standing relationships; and fostering living in a death-indifferent culture which justified society’s need to divide and regulate. Incorporating a range of data including promotional materials, policy and procedures manuals, and the voices of both residents and staff, these tensions are not only implicit in the culture of Manor House but within the overarching structure of LTC homes in general and have deep implications on the standing and status bestowed upon older adults in Canadian culture. My intention was to bring to light the contextualized lived experiences of individuals living at Manor House and highlight the structural and social barriers that continue to produce discrimination by “problematizing” aging and subsequently fostering notions of presumably acceptable dividing practices (Foucault, 1982) within society. By examining meanings and experiences of community in a LTC home, and also recognizing the systemic, structural and cultural factors that may shape those experiences, I sought to gain a more comprehensive understanding of the lifeworlds of individuals living within a LTC home.

The purpose of this thesis was to explore socially constructed discursive barriers to physical activity for people with physical disabilities. This research was informed by a critical disability studies framework. Eight interviews were conducted, split between end-users and stakeholders. The end-user article discusses their perspectives with regard to their own PA participation, their use of PA resources, and their views of how disability is constructed. The stakeholder article deals with their views with regard to Canada’s progress in creating inclusive PA guidelines, the research process as it effects people with physical disabilities, and how disability is constructed. The results showed awareness among both groups of the social model of disability, but that the medical model is still firmly rooted. Work is needed to create inclusive promotional materials and disseminate them effectively. An effective advocacy and lobbying effort was suggested as one avenue towards a possible solution to this issue.

The disability community is one of the largest minority groups vulnerable to social exclusion and marginalization, too often forced into poverty, unemployment and social isolation through dependence on the state. This is the result of systemic discrimination, and is being challenged by the social model of disability which frames disability as a political creation: it proposes that barriers, prejudice, and exclusion created by society (purposely or inadvertently) are the ultimate factors defining disability. The social model empowers people with disabilities to dismantle barriers so they have choice, flexibility, and control to gain the dignity, autonomy, equality, and solidarity associated with human rights and citizenship, and calls for research that takes an emancipatory approach and has a political commitment to confront oppression and exclusion. This interdisciplinary Masters thesis looks at the ways co-operatives can be vehicles for inclusion and empowerment for the disability community. It looks particularly at the multi-stakeholder model of co-operative, which is especially promising for the empowerment of the disability community as it brings together different member categories in an appropriate form of interdependence. My research uses case study methodology to explore how socially constructed barriers are the impairment to development in the disability community and to identify successes where informal multi-stakeholder co-operatives have been used to empower people with disabilities through analysis on four dimensions: how consumer-controlled the co-op is, use of multi-stakeholder alliances, promotion of the social model of disability, and ability to promote economic inclusion and social solidarity. The disability community needs new opportunities for empowerment and community development to overcome disadvantage and marginalization, and this thesis explores the potential of multi-stakeholder co-operatives, vis-à-vis the social model of disability, to do this. This research will help shape policies needed to foster social inclusion to empower people with disabilities and build disability solidarity through co-operative development.