This dissertation critically explores the governance of disability, social marginalization, and spatial exclusion in highland Ecuador. Since the 1990s, disabled Ecuadorians have moved from a state of social neglect and physical isolation to wider societal participation, fueled in part by national campaigns aimed at promoting disability rights. Many have joined grassroots organizations through biosocial networks based on the collective identity of shared impairment. However, their incorporation into the labor market, educational systems, and public sphere has been uneven and impeded by underlying spatial and cultural barriers. Based on twelve months of ethnographic research I conducted among people with physical and visual disabilities in the city of Cuenca, this research analyzes narratives of disablement within the local disabled community. I focus on the consequences of living with embodied differences considered to be anomalous within environments designed for nondisabled citizens. The study extends current scholarship on the social context of disability to a Latin American country with significant ethnic and economic hierarchies, exploring disability as an important dimension of social stratification that is both produced and remedied by the state. In Ecuador, the social category of people with disabilities has emerged through historical processes and campaigns that emphasize the prevention of impairment and chronic disease, promotion of equal rights, and inclusive labor markets - all of which are part of a broader aspiration toward modernity. I argue that disability is often an overlooked but important, cross-cutting form of bodily and behavioral difference that creates multiple marginalities. Emphasizing social practices and structural dimensions of disability shifts the attention away from approaches that foreground individual, psychological, or medical aspects of disablement and instead contributes to wider anthropological understandings of disability as socially produced, constructed, managed and enacted. In analyzing disability as a cross-cutting category, this research reframes disability as contingent on local constructions of normativity, highlighting how bodies come to be recognized as "abled" or "disabled" within particular productions of space and systems of un/marked subjects.

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Abstract The purpose of this study is to provide a descriptive account of the experiences of two teachers with disabilities in order to report how disability influences them both personally and professionally. My research questions were as follows. Firstly, how do participants understand themselves as adults, adults with disabilities, and as adults with disabilities who are teachers? Secondly, how does disability contribute to their pedagogy and how do their experiences as educators contribute to their understanding of disability? Thirdly, for these teachers with disabilities, what is the nature of their relationships in both educational and workplace contexts? Fourthly, what is their perspective on accommodations? Finally, what is their advice to aspiring teachers who have disabilities, including myself? I conducted interviews that addressed these research concerns with two participants, both experienced teachers with self-identified disabilities. For data analysis, I used the method of constant comparison to create codes and find themes within the data collected from the interview, based on disability identity and self-advocacy theories. It is discussed that individuals with disabilities face unique identity-related challenges aside from the physical and mental aspects of having a disability. A key finding is that participants were shaped by prior experiences in childhood and in the education system that were related to their disability which now influence their teaching. Other findings include: their independence, resilience and ability to strategize led to their creation of their own accommodations: they found an environment that honoured their own strengths. Both teachers found that disclosing their own disability helped their students to better relate to them. However, at the same time, they were not as aware of accommodations for themselves as they were for their students. Teachers with disabilities serve an important role in schools as they are not only representatives of what inclusive societies can achieve: they also have unique experiences and skills that are an asset to their students. Recommendations to expand upon Gill’s (1997) disability integration model as well as to create more inclusive environments for teachers with disabilities are also discussed. / Thesis (Master, Education) -- Queen's University, 2013-08-28 00:52:34.69

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Informed consent for pharmacogenomic testing in people with a learning disability Background Advances in genomic healthcare will enable medication to be tailored to each individual’s needs, based on subtle genetic variations. This will result in individuals being asked to consent to genetic testing for this purpose. The recent political agenda for social change has emphasised the right of people with learning disabilities to have more autonomy and make their own decisions. There have also been significant changes in the way healthcare practitioners relate to their patients, with a shift away from paternalism towards shared decision-making. Research Aim The aims of the study were (1) to explore the information needs of people with mild to moderate learning disabilities with respect to pharmacogenomic tests and (2) to identify ways of facilitating informed consent. Methods An integrative literature review was conducted to identify research on informed consent to healthcare interventions in people with learning disabilities (Phase 1). Subsequent phases (Phases 2-4) of the study were conducted using an ethnographic approach. Phase 2 involved observation of six participants with learning disabilities undergoing a routine blood test consultation in general practice. This was followed by Phase 3, in which semi-structured interviews with 14 participants with learning disabilities were conducted. In Phase 4, three different methods were used: focus groups with carers (four paid carers, five family carers), an on-line bulletin board for healthcare professionals (five participants) and interviews with six key informants from the field of learning disability. Findings The data showed consent procedures were often inadequate and there was inconsistent knowledge of mental capacity law amongst health professionals. Provision of information to patients prior to a blood test was variable, but interviews with people with learning disabilities revealed the fact that this information may not be wanted by them. People with learning disabilities viewed pharmacogenomic tests as similar to other blood tests and would want access to them. The attitudes of paid carers and family carers differed in terms of decision-making opportunities for people with learning disabilities. Conclusions Healthcare practitioners, carers and people with learning disability need to be familiar with the principles of the Mental Capacity Act to facilitate valid consent in the healthcare context. Healthcare practitioners also need to be made aware of developments in pharmacogenomics if it is to become part of routine health care. Finally, this study demonstrated the value of qualitative research in exploring the knowledge and attitudes of people with learning disability.