This thesis explores differences in the ways that intellectually disabled people are perceived, interpreted and related to within a Western context. Through a comparison of familial and institutionalised forms of relatedness, it examines the interrelation between these differences and the consequences that they have for either denying or acknowledging severely intellectually disabled people's capacities for sociality. Drawing on Carrithers' (1992) concept of sociality and mutuality, and Wittgenstein's (1953) notion of language games, the thesis analyses the means by which a meaningful and shared existence with intellectually disabled people can be negotiated and developed. Although limited and restricted in their capacities for symbolic expression, such people do have modalities of symbolic life upon which sociality can be built. By analysing the symbolic practices utilised by my three profoundly intellectually disabled siblings, I seek to show how relationships across the difference of intellectual disability are able to be symbolically mediated and negotiated. I argue that it is necessary to engage in relations of mutual interdependence in order to even recognise and perceive these practices as purposeful and meaningful. The mutuality that ensues requires a level of intimacy, empathy and commitment that is not easily sustainable, but which is necessary for the maintenance of intellectually disabled people's existence as social beings. These intimate relations are contrasted with clinical and institutional forms of relatedness, both of which have been informed and shaped by a symbolic scheme of reason and normality. This symbolic scheme associates a capacity for reason with normal humanness, where reason is identified as particular abstract, linguistic, mental practices that are then deemed necessary for sociality. These are what intelligence tests measure, and it is through such assessments that intellectually disabled people are rendered asocial. The pathologising of intellectual disability as an abnormal embodiment, and the clinical tendency to search only for deficits in functioning and ability, has led to a denial or ignorance of intellectually disabled people's abilities to be the independent sustainers and authors of mutuality and sociality. I draw on my family's medical notes, records from the institution where two of my siblings were sent to live, as well as observations made during twelve months of fieldwork with a group of intellectually disabled people attending an activities centre, and either living in community group homes or with their families, to elucidate the ways in which such interpretations of intellectual disability become instituted into daily practice. The instituting of training and management practices within day centres, group homes and institutions for the intellectually disabled are a consequence of the perception that intellectually disabled people have no capacity for sociality as they are. So too are the legal and structural obligations that inform the forms of relatedness that staff have with the intellectually disabled people with whom they work. These relations are based on separation and disengagement rather than mutuality and intimacy. The aim in these institutionalised environments is to instil in such people a range of normative social, domestic and vocational skills as though it is upon these that their capacity as social beings are dependent. As a result, the symbolic practices and dispositional behaviours through which intellectually disabled people express themselves are not recognised as such, nor are they engaged with. This undermines intellectually disabled people's capacity to be joint contributors to social life in a way which incorporates their differences rather than trying to transform them.

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

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

The purpose of this study was to describe the experiences of students with intellectual disability (ID) and their teachers throughout the implementation process of an augmentative and alternative communication (AAC) device. Two students and three teachers at an arts-based school for adults with developmental disabilities were trained by a speech and language pathologist on how to use the device. The students were selected by the teachers because they had limited ability to produce speech, and it was thought that they would benefit from using the device. The three teachers made up the school’s faculty, and the speech and language pathologist was selected based on her expertise working with people with developmental disabilities. Self-determination theory (Deci & Ryan, 1985) framed the study, and, it guided the observations and discussion of this thesis. Student experiences were explained through the lens of this theory, but teacher experiences were more applicable to Guskey’s (1989) model of teacher change. This framework was used to interpret the experiences of the teachers. Data were collected through direct observations and teacher journals throughout the implementation process, and semi-structured interviews, post-implementation. A total of 10, one-hour observations per student were conducted between January 15, 2013 and March 11, 2013; with one additional observation of an unplanned follow-up session that lasted one-and-a-half hours on May 8, 2013. The researcher observed student communication and engagement before, during, and after the device was brought into the class. The implementation steps included: introduction and experimentation with the AAC device in-class; teacher-only training; in-class student coaching and modeling; and withdrawal of SLP support. This study found that that there were practical and logistical challenges with AAC device implementation for both students and teachers. Limited time for in-class training, strategic planning, goal-setting, and financial resources, such as funds to hire supply teachers so that teachers could observe in-class training, were barriers to implementation. One student, more than the other, used the AAC device to communicate throughout the study. Recommendations emerging from the study included more purposeful advance planning, goal-setting, developing teacher pedagogical knowledge prior to implementation, and collectively-planned in-class training sessions for students and teachers. / Thesis (Master, Education) -- Queen's University, 2014-01-30 11:38:38.195

Work may be a potential source of physical activity for adults with ID, and therefore may be beneficial to their health. Using a cross-sectional descriptive research design this study examined the contribution of work to the overall physical activity levels of adults with intellectual disabilities. GT3X Actigraph accelerometers were used to measure the physical activity intensity levels of six employed adults with intellectual disabilities over eight consecutive days. Intensity levels were categorized into sedentary, light, or moderate-to-vigorous physical activity (MVPA). The overall physical activity levels were determined to establish whether participants met the Canadian physical activity guidelines for adults. In addition physical activity levels during work were compared to physical activity during non-work. Five out of the six participants met the Canadian physical activity guidelines of 150 minutes of MVPA per week. There were no significant differences between the amount of sedentary, light or MVPA during participant’s work and non-work. There were, however, medium and large effect sizes for physical activity levels during work versus non-work, showing that work had a substantial impact on physical activity behaviours. / Graduate / 0566

Doctor of Philosophy (PhD) / ABSTRACT This thesis reports on a study which explored the sexual health needs of men and teenage boys with a moderate to profound intellectual disability. Qualitative in design, this study was exploratory in nature as it sought to develop theoretical knowledge in male sexual health as a broad concept as opposed to testing a theory or hypothesis related to sexual health. Literature on sexuality and intellectual disability was reviewed in addition to male-specific literature on intellectual disability. In addition, mainstream literature on sexuality, sexual health, masculinity and men’s health was also reviewed. The literature review highlighted that the intellectual disability specific literature had largely ignored mainstream literature and had failed to acknowledge emerging work in men’s health and masculinities. Moreover, the literature identified a problematised focus toward sexual matters and males with an intellectual disability. The topic of enquiry was explored via an ethnomethodological design. Data consisted of interviews with 17 paid support staff, over 100 hours participant observation in community group homes, and triangulated with relevant artefacts from the field. The constant comparative method was used to analyse the data. Participants described the notion of men and teenage boys with a moderate to profound intellectual disability as being Conditionally Sexual. Conditionally Sexual was framed by three interconnected themes: 1) sexual development, 2) conditionally masculine, and 3) gendered service delivery. Through consideration of the implications to theory, practice, research, and policy, a propositional framework for a masculine health environment has been outlined. This framework is based on a salutogenic notion of male sexual health and the development of a healthy masculinity.

This thesis explores differences in the ways that intellectually disabled people are perceived, interpreted and related to within a Western context. Through a comparison of familial and institutionalised forms of relatedness, it examines the interrelation between these differences and the consequences that they have for either denying or acknowledging severely intellectually disabled people's capacities for sociality. Drawing on Carrithers' (1992) concept of sociality and mutuality, and Wittgenstein's (1953) notion of language games, the thesis analyses the means by which a meaningful and shared existence with intellectually disabled people can be negotiated and developed. Although limited and restricted in their capacities for symbolic expression, such people do have modalities of symbolic life upon which sociality can be built. By analysing the symbolic practices utilised by my three profoundly intellectually disabled siblings, I seek to show how relationships across the difference of intellectual disability are able to be symbolically mediated and negotiated. I argue that it is necessary to engage in relations of mutual interdependence in order to even recognise and perceive these practices as purposeful and meaningful. The mutuality that ensues requires a level of intimacy, empathy and commitment that is not easily sustainable, but which is necessary for the maintenance of intellectually disabled people's existence as social beings. These intimate relations are contrasted with clinical and institutional forms of relatedness, both of which have been informed and shaped by a symbolic scheme of reason and normality. This symbolic scheme associates a capacity for reason with normal humanness, where reason is identified as particular abstract, linguistic, mental practices that are then deemed necessary for sociality. These are what intelligence tests measure, and it is through such assessments that intellectually disabled people are rendered asocial. The pathologising of intellectual disability as an abnormal embodiment, and the clinical tendency to search only for deficits in functioning and ability, has led to a denial or ignorance of intellectually disabled people's abilities to be the independent sustainers and authors of mutuality and sociality. I draw on my family's medical notes, records from the institution where two of my siblings were sent to live, as well as observations made during twelve months of fieldwork with a group of intellectually disabled people attending an activities centre, and either living in community group homes or with their families, to elucidate the ways in which such interpretations of intellectual disability become instituted into daily practice. The instituting of training and management practices within day centres, group homes and institutions for the intellectually disabled are a consequence of the perception that intellectually disabled people have no capacity for sociality as they are. So too are the legal and structural obligations that inform the forms of relatedness that staff have with the intellectually disabled people with whom they work. These relations are based on separation and disengagement rather than mutuality and intimacy. The aim in these institutionalised environments is to instil in such people a range of normative social, domestic and vocational skills as though it is upon these that their capacity as social beings are dependent. As a result, the symbolic practices and dispositional behaviours through which intellectually disabled people express themselves are not recognised as such, nor are they engaged with. This undermines intellectually disabled people's capacity to be joint contributors to social life in a way which incorporates their differences rather than trying to transform them.

Doctor of Philosophy (PhD) / ABSTRACT This thesis reports on a study which explored the sexual health needs of men and teenage boys with a moderate to profound intellectual disability. Qualitative in design, this study was exploratory in nature as it sought to develop theoretical knowledge in male sexual health as a broad concept as opposed to testing a theory or hypothesis related to sexual health. Literature on sexuality and intellectual disability was reviewed in addition to male-specific literature on intellectual disability. In addition, mainstream literature on sexuality, sexual health, masculinity and men’s health was also reviewed. The literature review highlighted that the intellectual disability specific literature had largely ignored mainstream literature and had failed to acknowledge emerging work in men’s health and masculinities. Moreover, the literature identified a problematised focus toward sexual matters and males with an intellectual disability. The topic of enquiry was explored via an ethnomethodological design. Data consisted of interviews with 17 paid support staff, over 100 hours participant observation in community group homes, and triangulated with relevant artefacts from the field. The constant comparative method was used to analyse the data. Participants described the notion of men and teenage boys with a moderate to profound intellectual disability as being Conditionally Sexual. Conditionally Sexual was framed by three interconnected themes: 1) sexual development, 2) conditionally masculine, and 3) gendered service delivery. Through consideration of the implications to theory, practice, research, and policy, a propositional framework for a masculine health environment has been outlined. This framework is based on a salutogenic notion of male sexual health and the development of a healthy masculinity.

Background: Adults with Intellectual Disability (ID) experience health disparities that may be attributable to high sedentary behavior (SB). The levels and patterns of SB among U.S. adults with ID have received little attention. Purpose: To examine levels and patterns of SB in adults with ID. Method: The sample included 52 adults with ID who wore an accelerometer on the hip for 7 days. We determined total sedentary time, percent of wear time spent sedentary, number and duration of sedentary bouts, and breaks in sedentary time. We used t-tests and 2×2 ANOVA to evaluate the effects of sex or age-group and day of the week. Result: Adults with ID spent about 8-8.5 hours per day in SB and they primarily accumulated sedentary time in bouts 1-30 min in duration. Conclusion: Apart from small differences in SB, people with ID appear to have near uniform SB levels and patterns throughout the week.

Background: As a result of the changes in support for adults with Intellectual Disabilities (ID) and the increasing emphasis on independent living within the community, individuals commonly live in their own homes with support provided by voluntary or private services. As a result, support staff play a huge role in the lives of adults with ID and are often the mediators of interventions aimed at reducing distress or the occurrence of challenging behaviour. Issues relating to the well-being of support staff and how they manage behaviours that challenge services are central to the quality of the lives of adults with ID. Method: A systematic review was carried out regarding interventions aimed at reducing stress felt by staff supporting adults with ID, with the aim of informing the clinical practice of psychologists that work with such staff groups. An empirical study employing the qualitative methodology of grounded theory was also conducted to explore the experiences of staff working with clinical psychologists outside of their organisation in the development of support guidelines aimed at reducing challenging behaviour. Results: Findings from the Systematic Review highlighted the lack of high quality intervention studies aimed at reducing stress in staff. Some tentative support was found for interventions based on Acceptance and Commitment Therapy and those taking a more practical problem-solving approach. The empirical study resulted in a tentative model within which the role of expectations was highlighted as key to staff’s experiences of working with professionals. Conclusion: Further research is required in order to identify the most effective ways to reduce stress experienced by staff working with adults with ID. The constructed theoretical model suggests ways in which psychologists can understand the experience of staff and has implications for their practice.