As a population typically characterised by reference to their 'broken bodies' or 'damaged minds', western societies continue to systematically devalue and exclude disabled people from the good things in life. Influenced by social model thinking, there now exists an extensive literature on societal discrimination against people with disabilities when it comes to accessing material goods such as employment. education and housing. However, instead of adding to this burgeoning treasure chest of scholarly insights, this thesis changes tack in both subject matter and theoretical affinities, to examine a different, all too often ignored, material deprivation blighting the everyday lives of disabled people. Namely the fact that many disabled people are unwillingly leading celibate lives. Society's failure to grant recognition to the sexual needs of disabled people is nowhere more evident when it comes to the needs of intellectually disabled adults. In contemporary western society, to be intellectually disabled is to be infantilised and to be infantilised is to be desexualised. Amongst all the populations subsumed under the umbrella term of intellectual disability, one of the most common to be ascribed the 'Peter Pan' subject position by third parties are adults with Down syndrome. The prevalence of this 'Peter Pan' meme has bestowed adults with Down syndrome with an essentialist identity which positions them as disembodied, desexualised legal subjects. To highlight the most salient conceptual issues that constitute the dangerous discourse surrounding the debate on the rights of intellectually disabled adults to lead a non-celibate life, this thesis focuses specifically on barriers inhibiting adults with Down syndrome living in the parental home from expressing their sexuality via the medium of a sexual relationship.

Part 1 is a literature review of South Asian perspectives on intellectual disability. Thirty-one papers are reviewed according to seven geographical locations. South Asian needs, beliefs and knowledge about intellectual disability are highlighted. The limitations of the review are discussed as well as clinical implications and implications for future research. Part 2 reports an empirical study looking at public awareness, attitudes and beliefs about the causes of intellectual disability amongst the UK Sikh community. The association between socio-demographic factors and these variables are examined and comparisons are made with a matched white British sample, through the use of a two-group comparison design. The results are discussed highlighting on the whole similarities between the groups. Part 3 is a critical appraisal which focuses on the process of carrying out research with the UK Sikh community. Reflections on the literature review are discussed with reference to the scope of the review, the quality of the studies included and reasons for omitting potentially relevant articles. Key dilemmas and difficulties experienced whilst setting up the study are explored which focus on promoting the study and recruiting participants. Finally issues concerning data interpretation are discussed.

Part one of this thesis reviews the literature on the interrogative suggestibility of individuals with intellectual disability. The first section describes the historical background of interrogative suggestibility and the development of the Gudjonsson Suggestibility Scales. This is followed by a critical review of the methodology and findings of studies investigating the differences in suggestibility of people with and without ID and the implications for clinical practice. Part two is an empirical study investigating the differences between adults with and without mild intellectual disability (mild ID) on an ecologically valid measure of fitness to plead and stand trial (FTP) based on realistic court proceedings. As expected, the adults with mild ID performed more poorly on all aspects of the FTP task matched to the five Pritchard criteria indicating that they found it significantly harder to understand various aspects of the trial process and proceedings. There were also significant positive correlations between most of the measures of intellectual and memory functioning and performance on the FTP task. The limitations of the study, recommendations and clinical and legal implications of the findings are discussed. Part three is a critical appraisal that focuses on two key issues related to the empirical study. Firstly, the current method of assessing IQ and the diagnostic criteria of ID is discussed and particularly in relation to the nature of definitions of ID for research and clinical practice. The review then considers the use of entirely novel measures in research with particular reference to the use of a novel measure of FTP as described in this paper.

Background: People with intellectual disability (ID) are more likely to be overweight or obese compared to their peers, which fuels the need for effective healthy weight management programmes targeted at this population. In order to inform such programmes, more evidence is needed relating to how people with ID perceive their bodies. Method: This study uses qualitative and quantitative methodology to explore body perception and body dissatisfaction in 40 young adults with ID compared to 48 individuals without ID. The Stunkard Figure Rating Scale was used to assess how participants perceived themselves, how they would like to look, and how they conceptualised underweight, healthy-weight and overweight. This rating scale was shown to be a valid and reliable measure when used with this population. Results: Results show that young adults with ID tend to hold positive beliefs about their bodies. Females with ID are likely to perceive their bodies to be smaller than they are and neither males nor females report a desire for an altered body size. The results also suggest that individuals with ID understand what is meant by 'overweight', 'healthy-weight' and 'underweight' although these concepts are qualitatively different compared to those held by people without ID. Furthermore, individuals with ID are unable to apply these body size categories to themselves. Conclusion: It is vital to consider these findings when designing healthy weight management programmes for people with ID. These individuals will need to be supported to understand how concepts of body size apply to themselves before they can move on to make positive choices about their weight management.

This thesis is about parents who manage direct payments for their adult children with severe learning disabilities and complex support needs. The twelve parents in this research, in different areas of England, instigated this role in line with government policy in the UK, in an effort to bring about a better quality of life for their children. They have since theoretically been assigned the role of 'suitable person' under the Mental Capacity Act 2005 and the Health and Social Care Act 2008. The research aimed to gain an understanding of their experiences of carrying out this role. An (auto) ethnographic methodology was adopted, since I share with the participants the experience of managing direct payments for my own son. A key part in the reflective element was the mutuality and differences of the participants' and my own experiences of carrying out this role. This thesis unpicked the different roles played by the participants: parents, managers, and 'suitable person'. It highlighted the safeguarding roles parents performed, which were closely linked with a personalised understanding of their child, ultimately enabling them to implement tailored solutions for their care and support. But it also highlights that the 'informality' of their formal roles proved to be a distinct disadvantage for them. This thesis has exposed stereotyping that still underpins social services' responses to people with learning disabilities, and the unequal balance of power experienced by parents when they came into contact with care professionals. The key concepts of choice, control and partnership are questioned in the thesis, and the negative effects on the lives of parents are set against the positive outcomes they can see for their sons and daughters. The thesis also highlights a general lack of understanding of how capacity is assessed under the Mental Capacity Act and the roles of professionals and parents within 'best interests' decision-making. This thesis therefore considers the gulf between lived reality and policy rhetoric.

This thesis argues that existing academic approaches to studying music in everyday life underplay various contextual factors and neglect momentary musical activities that are enacted amidst the demands of domestic life. The connection of music to everyday life is often taken for granted. For example, the musical activities that often accompany domestic routines, such as singing, dancing or humming to songs heard on the radio or television may be quickly forgotten. Yet, as this thesis will demonstrate, these relatively mundane activities an become highly significant on a number of levels.

Background: The significant health problems associated with people with ID are widely documented and acknowledged. Despite the recognised high level of unmet health needs, many of the frontline staff who work with this population receive little health promotion training. A review of the literature found no validated tools/instruments to assess staffs' knowledge and attitudes with regard to promoting the health of people with ID. Aim: The aim of this study was to develop and test a questionnaire which will assess the knowledge, attitudes and practices of care staff in promoting the health of people with ID. Method: This is a four phase multi-method study: Phase 1 involved 13, one-to-one telephone interviews with international experts from the field of I D and health promotion focusing on the enablers and barriers of health promotion for this population. During phase 2, seven focus groups were undertaken with frontline staff, family carers and adults with ID to explore their knowledge, attitudes and practices regarding health promotion. The findings from these two phases coupled with the insights from a literature review were utilised in the development and testing of a questionnaire in phase 3. This questionnaire was first piloted with experts and a sample of ID staff. During phase 4 the finalised questionnaire was then tested with a sample of (N=248) staff on two separate occasions to examine its validity and reliability. Initially an exploratory factor analysis was carried out on the Time 1 data. This factor structure was then tested using confirmatory factor analysis on the Time 2 data. Findings: Six core themes were identified from phases 1 and 2 (staff knowledge, attitudes, work environment, education/training needs, roles and responsibilities and barriers to health promotion). The questionnaire was piloted and tested and found to be broadly reliable and valid. The questionnaire confirmed that staff generally had limited knowledge about the health and health promotional needs of this population. Many staff held negative attitudes. Staffs' roles and responsibilities were not clear, and their employing organisations did not have a strong health promotion ethos. Results also highlighted a lack of health promotion policy. Discussion: This new questionnaire offers researchers, educators and service providers a tool to identifying shortcomings in staffs' knowledge, attitudes and practices. Having a baseline indication, will enable appropriate health education, health promotion initiatives and training programmes to be developed and evaluated

This study explored the effect of a health check on the quality of life of patients with intellectual disabilities, perceived health of patients and careers and career stress. Quality of life indicators included abilities, challenging behaviour, mental health, community participation and involvement in activity. A primary care identified population of 190 people with intellectual disabilities and their carers was divided into two groups. Quality of life data were collected at baseline, once for the experimental group and twice for the control group, after a six-month period to control for extraneous variables. Health checks were conducted for all subjects by primary care teams and post-intervention data were collected four months later. Data were also examined to investigate whether residence type, subject characteristics or health needs being identified influenced any intervention effect. Little impact was evident on any of the variables measured, although family home subjects and carers of subjects without challenging behaviour reported a reduction in levels of strain at post intervention. Despite the limited intervention impact on quality of life, the health checks identified a range of health needs ranging from impacted earwax to breast cancer. In the light of these findings, the use of standardised quality of life scales to measure effects of changes in individuals' health status is discussed. The health needs identified at the health check highlighted the importance of conducting health promotion with this population, and recommendations are given for strategic use of health checks as one component of the health promotion measures used within primary care.

Part 1 is a literature review investigating South Asian parents' perceptions of their child's intellectual disability, its effects on family life and views on service use. Search strategies used to identify relevant literature are specified and the results are presented in three parts. Firstly, experiences of parents regarding the process of diagnosis and provision of support are discussed. Secondly, their perceptions of the causes, symptoms and prognosis of their child’s intellectual disability are presented. Lastly, the effects of having a child with an intellectual disability on parenting and family life are outlined. The findings are then summarised and implications considered. Part 2 is a qualitative study designed to address gaps identified in the literature review, focusing on the attitudes and beliefs of the Pakistani community in the UK regarding intellectual disabilities. The results highlight the importance of taking the views of this community in account in implementing current UK policy centred on choice, independence and social inclusion for people with intellectual disabilities within a multicultural society. The results are followed by a discussion of the findings, where the study’s strengths and limitations, implications for policy and service provision are also considered. Finally, a direction for future researchers is suggested. Part 3 is a critical appraisal detailing personal reflections and considering methodological issues which arose during the study.

This thesis presents a critical literature review and reports on the findings of three empirical studies, examining the relationship between life events and psychological problems in people with intellectual disabilities. An introduction is provided in Chapter 1. The critical review (Chapter 2) describes the current evidence base in relation to a critical framework that aims to establish life event exposure as a causal risk factor for psychological problems. Chapter 3 presents the results of a longitudinal study, using data from proxy informants, and begins to address the need for further longitudinal data in establishing life events as a risk factor. Chapter 4 presents the results of a self-report study of life events, psychological problems and social support, intended to establish whether valid data on life events could be obtained using self-report interviews with people with intellectual disabilities. The putative role of social support as a moderator in the relationship between life events and psychological problems is also examined. Chapter 5 presents the results of a longitudinal study of life events in children with intellectual disabilities, which begins to address the need for further studies of life events in children with intellectual disabilities, and in particular, the need for longitudinal evidence.