Thesis (Ph. D.)--York University, 1999. Graduate Programme in Social Anthropology. / Typescript. Includes bibliographical references (leaves 312-346). Also available on the Internet. MODE OF ACCESS via web browser by entering the following URL: http://wwwlib.umi.com/cr/yorku/fullcit?pNQ43422.

Breast cancer is a leading cause of mortality among women in the United States. Women with chronic disabling conditions such as multiple sclerosis (MS) are less likely to participate in routine mammography screening than women without disabilities due to multiple barriers. Underuse of mammography screening may lead to a diagnosis of a later stage breast cancer and consequently higher breast cancer mortality rate. This study examined the influence of several factors including, severity of MS-related functional limitations, demographic characteristics, family history of breast cancer, beliefs related to mammography screening and breast cancer, and personal resources on usual screening mammography in a sample of women with MS. The conceptual framework guiding this study was synthesized from The Explanatory Model of Health Promotion and Quality of Life in Chronic and Disabling Conditions and the Health Belief Model. Data from an ongoing longitudinal study (R01NR003195) focused on health promotion of persons with MS were combined with primary data for this prospective descriptive correlational study. The nonprobability sample consisted of 274 women ages 39-85 years who were primarily White (92%), married (66.1%), and unemployed (64.1%) with a 22 year average length of diagnosis with MS. Data were collected over two years using a mailed survey. Descriptive statistics and hierarchical logistic regression analyses were used to address the research questions. The annual mammography rate in this sample was 62%. Perceived susceptibility to breast cancer (AOR = 3.0, p < .05), family history (AOR = 2.5, p < .05), economic adequacy (AOR = 1.6, p < .05), and perceived barriers to mammography (AOR = .98, p < .05) significantly predicted mammography use, adjusted for severity of functional limitations. Though severity of limitations was negatively associated with mammography, it was not a significant predictor in the overall model. These findings suggest that for women with chronic disabling conditions, health beliefs, family history, and personal resources influence mammography screening. Clinicians need to continue to eliminate the barriers to mammography screening to improve screening and reduce overall breast cancer mortality rate in this vulnerable population. / text

Purpose: The purpose of this study was to explore the experience of individuals who are aging with a lifelong and/or early-onset physical impairment. Method: A qualitative methodology was utilized consisting of narrative inquiry informed by the Life Course Perspective. The life course perspective is a dynamic approach that encompasses multiple theories including sociology, human development, and aging, highlighting how social, historical, and cultural contexts shape people’s lives. Narratives are storied ways of knowing and communicating that people use to organize events in their lives and make sense out of their experiences. Nine community-dwelling individuals (3 men; 6 women), aged 26-70, with mild to severe Cerebral Palsy were recruited using a combination of purposive and snowball sampling. Multiple (3-4), in-depth interviews were completed with each participant in order to co-construct their life stories. The data analysis was iterative. NVIVO 8 was used to organize the data, supporting a systematic caparison of emerging themes and categories, as well as the central plot that weaves the participants’ experiences together. Findings: “Defying the Odds” emerged as the central narrative that weaved together their experience of growing up and growing older. Their narrative is depicted through the trajectory of the disordered body that manifests itself in peaks and valleys. Their narrative is also weaved together by three central threads: Achieving a Sense of Belonging, Overcoming being Seen but not Heard, and Striving for Self-Reliance. “Normalization” emerged as a key recurring theme in the participants’ life stories. The focus of rehabilitation on "normalizing" movement, particularly walking, during childhood can lead to social psychological challenges as well as problems later in the life course as people encounter increasing fatigue and decreasing functional abilities but no longer have access to rehabilitation services. Implications: Theoretically, the disordered body needs to be reconceptualized in ways that are more positive. Conceptualizing a theory on aging with disability needs to be pursued. Clinically, we need to work towards developing a continuum of care across the life course with a focus on long-term maintenance and prevention of secondary health problems.

A call for the design of programs focused on the development of self-awareness skills permeates the field of research and practice on postsecondary students with learning disabilities (LD). Important components of self-awareness are students' advanced understanding of learning, LD, and the social context (peers, instructors, classmates) of college learning. This study explores students with LD's conceptual understanding of learning and LD by situating it within developmental theoretical frameworks delineating the form and content of adult reasoning. Twelve female and five male college-students with LD participated in two-hour interviews. Students' thinking about others was explored by asking participants to reason about the behaviors, intentions, feelings and traits of the characters in two scenarios depicting typical dilemmas faced by students with LD. Students' conceptual understanding of learning and LD was elicited by means of open-ended questions followed by prompts. Students' responses were scored for level of cognitive complexity and coded for conceptual content. Overall, the students reasoned abstractly about learning and LD at a level of complexity expected from college-age population. They demonstrated well-developed understanding of others' expectations and motivations especially as they relate to the themes of self-identification, seeking accommodations, and understanding of LD. Students' conceptions of learning and LD presented qualitatively different variations on main themes. These variations paralleled the increase in complexity and were associated with experience(number of years of education). The overarching understanding of learning as acquiring knowledge transitioned from understanding learning as an external, given task to learning as an internal, personal-development process. The common understanding of LD as a difference transitioned from a difference related to an external label and an imposed constraint, to meaning of "difference" as a special ability, an asset, and a source of identity. These results indicate a possible progression in the evolution of the concepts of learning and LD throughout the college career of students with LD. The approach to this conceptual content and its description can inform and serve as starting points in the development of programs that foster the conceptual understanding of learning, LD, and the social-context of the educational enterprise, as a way of building these students' self-awareness skills.

A successful transition into kindergarten is of the utmost importance, as it marks the beginning of formal education and paves the way for future academic and social outcomes. The transition into school is considered to be a challenging and anxiety-ridden time for most children and their parents; it is expected therefore, to be particularly difficult for children with an intellectual disability (ID). These children have deficits in cognitive and adaptive functioning that affect their academic and social skills. Despite the apparent difficulty for children with ID and the importance of this time in their lives, the transition into school has been a relatively under-researched topic. Nineteen parents of children with ID participated in three one-hour phone interviews throughout the transition into school. The aims of the study were 1) to describe this group of children with ID and their families as the children entered school, 2) to investigate changes in characteristics of the child, resources, and perceptions of the parent during the transition, and 3) to examine relationships between these variables and the child’s quality of life and school readiness. Although the results are based on a small sample, they do provide some preliminary information about the experiences of children with ID and their families throughout the transition into school. Only adaptive behaviour scores and the number of services accessed changed significantly during the time of transition. Furthermore, it was found that adaptive behaviour was correlated with school readiness skills, as were physiotherapy and speech-language therapy use. The only variable that correlated with the child’s quality of life was parental involvement in parent support groups. Implications and directions for future research are discussed. / Thesis (Master, Psychology) -- Queen's University, 2007-08-28 15:35:10.833

Dewey provides a rich context in which to develop an understanding of education as growth. By developing an understanding of education as growth, educational research can be incorporated into that context so that a more comprehensive model of education may be considered. Education as growth suggests that education is about progress rather than end states. The knowledge and skills of inquiry must be understood as part of an interconnected whole that includes the physical, social, and intellectual growth of the individual and the community. The role of inquiry in the development of concepts and habits that foster the intellectual and cultural growth of the individual and community are discussed. The work of researchers on math learning disabilities is presented and examined in light of Dewey’s concepts of growth and inquiry so that the educational needs of students with math learning disabilities might be included in a model of education. The quality of the educational experiences of students with math learning disabilities has significant implications for the growth and development of all students, parents, teachers, researchers, and the community. / Thesis (Master, Education) -- Queen's University, 2009-04-16 19:58:52.504

This dissertation explores and defends a form of perfectionism, which I call ‘public value perfectionism’. It is an approach that emerges from Sen’s capability critique of Rawls’s doctrine of primary goods and I argue that this form of perfectionism is not only compatible with, but also demanded by, a general defence of liberal neutrality. It is designed to fulfill a demand of justice that is beyond the reach of neutralist tools, yet it belongs within a larger neutralist framework in virtue of being justified by the same types of reasons that support neutralism. One of the main justifications for state neutrality is that it can serve as a means to remove or reduce disadvantage imposed on vulnerable groups. I will argue that in the case of disability limited state perfectionism can serve as a means toward that same goal. The series of arguments that I make to defend public value perfectionism concern issues relevant to debates about neutrality and perfectionism, the metric of advantage, justice and disability, and health resource rationing. These issues each play a role in the argument I develop, which states, simplifying somewhat, that in order for society to make defensible rationing decisions about social spending that aims to reduce disability, we need an approach to advantage—i.e., public value perfectionism—that contains important elements of perfectionism and yet is grounded on neutralist considerations. / Thesis (Ph.D, Philosophy) -- Queen's University, 2009-07-21 10:11:07.921

Background: Stigma can not only affect the stigmatized individual, but also those closely associated with that individual, such as parents. Parents are often in the role of primary caregivers for individuals with intellectual disabilities. However, few studies have looked at the experiences of stigma in parents of adults with intellectual disabilities. Objectives: Three objectives of the current study were to test the internal consistencies of three scales aimed to measure experiences of parents of adults with intellectual disabilities (two stigma scales and one scale looking at positive personal, perspective on life, and relational changes in parents), test the inter-correlation between the scales and describe the parents’ experiences. Methods: A self-administered survey containing the three scales was mailed to parents of adults with intellectual disabilities by agency staff on the investigators’ behalf. The participants were identified through a database of anonymized information about individuals with intellectual disabilities within the six counties of South Eastern Ontario. A total of 97 participants (parents) were eligible for the study. Results: The scale measuring positive changes experienced by parents had significant item non-response. However, all three scales achieved good to excellent internal consistencies when tested in the current sample. The two stigma scales were moderately correlated with one another in a positive direction, while the scale measuring positive changes in parents did not significantly correlate with either of the stigma scales. Mothers and younger parents (less than 65 years) were more likely to report that stigma affected their ability to interact with relatives than fathers and older parents. Parents of adults with dual diagnosis (having both an intellectual disability and mental health problems) were more likely to report that stigma affected their family’s quality of life than parents of adults with an intellectual disability only. Conclusion: Both of the stigma scales are recommended with caution, with recommendations ranging from rewording of items, change in item order within the survey, more conservative item response categories, reconsideration of dichotomizing responses and a mode of survey administration which lowers the potential for non-response. Certain groups of parents of adults with intellectual disabilities experience stigma differently than others. / Thesis (Master, Community Health & Epidemiology) -- Queen's University, 2010-05-19 18:06:55.622

In what follows, I engage in a wide-ranging discussion that captures the components of a metric of egalitarian justice (that is, the nature of the principles that specify what we aim to distribute equally) best designed to promote a minimally just state of affairs for not only, but principally, people with disabilities. First, I examine precisely what it is we mean when we refer to “disability”. I do this to ensure we have adequately deliberated over, and subsequently identified, the particular group of individuals for whom we aim to promote justice. I conclude this section by endorsing the so-called ‘interactional model’ of disability, and denying the accuracy of the ‘social model’. Second, I argue that while a focus on the capabilities approach can help provide us with an answer to the currency question that most closely approximates justice for the disabled, a minimally just state of affairs would nevertheless, fail to materialize should we opt to endorse such a conception of egalitarian justice. I point to the inability of the capabilities approach to: i) accurately identify and calculate degrees of need or injustice; ii) be adequately sensitive to the diverse natural endowments when assessing need; iii) acknowledge the special moral importance of health as well as various other functionings. Finally, I conclude that a focus on first and foremost, condition, rather than opportunity, can better weather the challenges I present against a capabilities framework. More specifically, I suspect that a focus on both material conditions, and substantive freedoms or opportunities, is necessary to provide an adequate minimal conception of justice. I will argue that there are a set of material conditions that are lexically prior to a group of opportunities that must also be afforded within a conception of justice, and that merely providing the opportunities for these conditions is inadequate. In other words, I suggest that there are indeed, some functionings that must be assured within a minimal conception of justice, regardless of the choices exercised surrounding the securing of those functionings. / Thesis (Ph.D, Philosophy) -- Queen's University, 2012-03-14 12:43:02.176

Augmentative communicators are perceived to have difficulty with reading and writing. This research investigates the effect of increased opportunity to communicate via telecommunications on the reading and writing of adult augmentative communicators who are severely disabled. Two case studies were conducted utilizing a single subject, repeated measure design. The subject of each case study participated in on-line interactive Blissymbol telecommunications sessions with a speaking partner for nine hours per week over ten months. Reading and language tests were administered at two month intervals. Written transcripts of on-line conversations were collected and coded according to macro and micro language functions. Following the increased opportunity to communicate via telecommunications, case study two paralleled the results found in case study one displaying increased reading ability as demonstrated by the upward trends on the multiple reading measures utilized. Case study two also corroborated case study one in the written communication as demonstrated by the increased use of complex language functions, initiations, and response to statements. The findings suggest that providing augmentative communicators with meaningful and functional reading, writing, and 'speaking' opportunities, similar to those provided with the telecommunications opportunity in this research, will have a positive effect on reading and writing.