Dissertations / Theses: 'Intellectual disability;disability studies;anthropology'

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Klotz, Jani Frances. "Denying intimacy: the role of reason and institutional order in the lives of people with an intellectual disability." Thesis, The University of Sydney, 2001. http://hdl.handle.net/2123/513.

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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.

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Klotz, Jani Frances. "Denying intimacy: the role of reason and institutional order in the lives of people with an intellectual disability." University of Sydney. Anthropology, 2001. http://hdl.handle.net/2123/513.

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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.

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Pickard, Matthew. "Diagnostic Overshadowing, Essentialism, and Intellectual Disability| Lay Persons' Perceptions." Thesis, University of Central Arkansas, 2018. http://pqdtopen.proquest.com/#viewpdf?dispub=10615749.

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This study examined if diagnostic overshadowing occurred with lay people in regard to individuals with an intellectual disability, as well as investigating how lay people essentialize different categories. It was hypothesized that essentialistic thinking could be offered as a partial explanation for diagnostic overshadowing because certain mental health disorders would be categorized as having a strong, unchangeable biological component to them. Three hundred and thirty undergraduate general psychology students from the University of Central Arkansas completed the Essentialism Belief Scale on nine different concepts, read different case descriptions of an individual with or without an intellectual disorder, and gave their impressions of the individual as experiencing anxiety, depression, and if the person had an intellectual disability. Contrary to expectation, lay people did not demonstrate diagnostic overshadowing. Therefore, the relationship between essentialistic thinking and diagnostic overshadowing could not be confirmed and suggests that diagnostic overshadowing may occur for reasons other than essentialistic thinking. Interestingly, when essentialistic thinking was analyzed using a principal components analysis, a three-factor solution for essentialistic thinking was found, accounting for 72.22% of the variance, with the three factors appearing to demonstrate a biological, non-biological, and mental health grouping.

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Riley, Jude E. L. "'Idiot-brained South' : intellectual disability and eugenics in Southern modernism." Thesis, Northumbria University, 2015. http://nrl.northumbria.ac.uk/27322/.

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This thesis examines the construction and functions of intellectual disability in the modernist literature of the American South from 1925-1940. The period saw a remarkable proliferation of intellectually disabled figures in various guises. These include William Faulkner's Benjy in The Sound and the Fury which has become one of the most analysed 'idiots' in all literature. However, the wider trend of which he is a part has largely lacked critical attention. Furthermore, the connections between this regional literary trend and the prominence of the eugenic movement in the era have been unexplored. This thesis questions why intellectual disability was so important to Southern writers in particular, and why it appears so frequently in their works. The thesis also examines the extent to which Southern writers incorporated eugenic ideas into their representations and how authors reinforced or challenged contemporary ideas regarding intellectual disability. The thesis offers detailed close readings from a selection of southern writers’ works contextualised with primary and secondary historical source material to adequately trace the period’s social, scientific and aesthetic models of intelligence and intellectual disability. The thesis argues that intellectual disability and eugenics were integral to the ways in which southern writers represented their region, not only in negotating regional and national anxiety regarding southern intelligence, but also acting as a crucial vehicle through which these authors examined the South's uneasy and peripheral relationship with modernity. The thesis adds to a growing understanding of the cultural significance of intellectual disability and the eugenic movement and shows how southern modernists' depictions of intellectual disability were linked to and can illuminate understandings of regional and national debates in the period about intelligence, inheritance, disability, family, community, and modernity.

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Simpson, Wendy. "Siblings of people with intellectual disability: Relationships and decision-making across the life span." Thesis, Edith Cowan University, Research Online, Perth, Western Australia, 2021. https://ro.ecu.edu.au/theses/2417.

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A growing amount of research focuses on siblings of children with disabilities. However, limited evidence exists to provide a solid understanding and depth of knowledge of the issues that affect adult sibling relationships when one has intellectual disability. Since sibling relationships are the longest lasting family relationship, they are becoming more important because people with disability are outliving their parents or main caregivers. The increased longevity of people with disability has a societal and economic impact that has been recognised in the context of the recently introduced National Disability Insurance Scheme (NDIS) in Australia. By exploring the experiences of siblings who have a brother or sister with intellectual disability, this study aimed to understand how family characteristics and childhood experiences influence sibling relationships and decision-making across the life span. Utilising a mixed methods approach—predominantly a qualitative study design—a total of 79 adult siblings of a person with intellectual disability from Perth, Western Australia, completed an online survey and/or participated in an interview. Participants ranged in age from 18 to 70+ years of age. Qualitative data were analysed using a thematic analysis process, guided by Braun and Clarke’s (2006) six-phase framework. Four major themes were constructed that captured the experience of growing up with a sibling with intellectual disability: relationships, knowledge and understanding of disability while growing up, siblings as carers and the consequences for family. The findings revealed that the birth or diagnosis of a child in the family with intellectual disability resulted in a change in the family dynamics, a focus on the child with disability and parental differential treatment. Siblings reported a sense of having missed out while growing up and an ascribed or assumed role of carer. The variables that influence the relationship between siblings when one has intellectual disability were found to be broad, including individual, family and disability characteristics. In addition, this study found evidence to support findings from earlier research that correlates growing up with a sibling with disability and a propensity to follow a career path in a helping or service profession. Limited evidence was found in this study of a mutually beneficial close relationship with a sibling with intellectual disability that did not have elements of care, protection or a sense of responsibility attached. Findings also revealed that in adulthood, siblings often felt ‘disconnected’ from their sibling with intellectual disability when formal support services were in place, sometimes leading to discord between service providers and siblings regarding the nature of support for their sibling with intellectual disability. These findings have implications for policy and practice in disability services because they highlight the importance of holistic family inclusion that includes siblings to enhance natural relationships and supported decision-making with siblings with intellectual disability. Recommendations include the recognition of siblings in policy and legislation, particularly in the NDIS; the inclusion by disability support and early intervention services of siblings in family discussions, planning and decision-making; and making readily available augmentative and alternative methods of communication as an imperative means of promoting sibling connectedness when one has intellectual disability. This study adds to the literature on adult sibling-disability research from an Australian perspective.

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Kamperman, Sean Allen. "Intellectual/Developmental Disability, Rhetoric, and Self-Advocacy: A Case Study." The Ohio State University, 2019. http://rave.ohiolink.edu/etdc/view?acc_num=osu1555429687963749.

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Kahonde, Callista Kanganwiro. "A grounded theory study of family caregivers' responses to the sexuality of young adults with intellectual disabilities." Doctoral thesis, University of Cape Town, 2016. http://hdl.handle.net/11427/24508.

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Globally, people with intellectual disabilities are not afforded equal opportunities to express and enjoy their sexuality on par with their peers. Although most of them remain under the lifetime custody of family caregivers for care and support, a knowledge gap exists in understanding the role of the family caregivers in the sexuality issues of people with intellectual disabilities, especially in developing countries like South Africa. The present study is the first of its kind that employed an exploratory, theory generating methodology, the constructivist grounded theory methodology, to seek understanding of how family caregivers in the Western Cape Province of South Africa respond to sexuality of young adults with intellectual disabilities. Data were gathered through in-depth and focus group interviews with 25 family caregivers and further confirmatory interviews with nine service providers of young adults with intellectual disabilities. The study generated a substantive grounded theory, the Theory of Contained Sexuality, to explain the responses of family caregivers to the sexuality of young adults with intellectual disabilities. The study found that the family caregivers' thoughts, emotions, actions and behaviour towards the sexuality of the young adults with intellectual disabilities are influenced by what the family caregivers see as implications of the young adults' sexual expression and behaviour on both of them. The family caregivers do not completely suppress or restrain the sexuality of the young adults with intellectual disabilities but they support with 'containment', that is they try to confine the sexuality within boundaries that they can control and manage within their lifelong caring role. Ultimately, what the findings of this study point towards is the impact of lifelong family care on realisation of sexual rights by people with intellectual disabilities. Hence, the study concluded that, without the appropriate forms of support and probably alternative forms of care, the human rights framework as embodied within the United Nations Convention on the Rights of Persons with Disabilities and local policies informed by it is insufficient as a tool for sexual emancipation of people with intellectual disabilities. Therefore, a relational moral theory - the ethics of care - is proposed as appropriate to complement the human rights framework in both research and practice around sexuality of people with intellectual disabilities living under family care. The study also highlights the imperative for further studies that investigate the impact of lifelong family care on other aspects of the lives of people with intellectual disabilities and promote theorisation of lifelong care within such studies.

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Echeverria, Francia. "Reducing Rapid Eating in Adults with an Intellectual Disability." Scholar Commons, 2011. http://scholarcommons.usf.edu/etd/3084.

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Rapid eating is a frequent problem among individuals with developmental disabilities that can pose a threat to health. The following study sought to reduce the rate of eating behaviors in two adults diagnosed with moderate intellectual disability. Assessment of eating rate took place in the participants' group homes during lunch or dinner meals. Procedures included the use of vibrating pagers with and without verbal prompts to prompt eating and prevent rapid eating behaviors. Results demonstrate a clear reduction in rate of eating when using vibrating pagers and verbal prompts for both participants.

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Wanjagua, Rachael Wachera. "Identifying support needs for people with intellectual disability and their families through a family quality of life survey in Kenya." Master's thesis, University of Cape Town, 2018. http://hdl.handle.net/11427/29849.

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Intellectual disability (ID) is associated with limitations in cognitive, practical and adaptive functions. Individualised supports therefore enhance functioning for people with ID. Families often manage supports for their ID members alone. If not supported, the family quality of life (FQOL) is affected, which also affects the quality of life of the disabled member. FQOL therefore is an outcome measure for support services and strategies. In Kenya, FQOL and supports of families with individuals with ID is not known. This study’s purpose was to understand the FQOL of people with ID and their families and their support needs. The methodology used was a qualitative design, exploring perceptions of 7 people with mild ID and 8 caregivers on FQOL and support needs through interviews and 2 focus group discussions (FGDs). The Beach Centre Family Quality of Life Conversation Guide was used and piloted with 2 people with ID and 2 caregivers. It was adapted by simplifying the questions for people with ID and translated into Swahili. The study had emancipatory approaches with 2 people with ID and 1 caregiver as research assistants. 10 participants were identified through special schools and a village elder from each zone namely Nyahururu, Kinamba, Ol’ngarua and Mailoinya in Laikipia County. 2 participants for each category were selected through random sampling. Informed consent was received from all participants and caregivers of people with ID. Ethical approval was granted by the Human Research Ethics Committee of the University of Cape Town and a research permit granted by the Kenya National Commission of Science, Technology and Innovation. Data was collected and recorded on a mobile device. Identification codes were used to protect anonymity. Verbatim data was transcribed and checked by participants in FGDs. Confirmed data was translated into English and deductive and inductive analysis was done using Dedoose version 7.5.15. Similar data from the 5 domains in the Beach Centre FQOL Conversation Guide was coded together to develop the theme (community supports). FindingsFQOL in Kenya can be described through family interaction, parenting, emotional wellbeing, disability-related supports, physical/material wellbeing and community supports. Poverty, rights of people with ID and cultural constructions of disability can inform disability-related services, government policies and guidelines. Study limitations: The findings are representative of support needs for families of people with mild ID. The study gathered perspectives of people with ID and caregivers, and hence more views could be gathered from other family members. This study was conducted in rural settings and should be interpreted with this in mind.

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Karisa, Amani. "Understanding father involvement in the education of learners with intellectual disabilities in a special school in Kenya: a case study." Doctoral thesis, Faculty of Health Sciences, 2020. http://hdl.handle.net/11427/32273.

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There are known benefits of father involvement in a child's life, such as positively affecting the child's life prospects, academic achievement, physical and emotional health as well as linguistic, literary and cognitive development. In African settings, fathers are traditionally the heads of families and the main decision makers in matters like the education of their children. However, a limited body of scientific knowledge exists on fathers' roles and involvement in the education of their disabled children in the African context. To address this knowledge gap, a qualitative case study to understand the nature of father involvement in the education of learners with intellectual disabilities in a special school in Kenya was conducted. The research question was: what is the nature of father involvement in the education of disabled learners at Sir Ali Special School, Kenya? The study was guided by theoretical perspectives from disability studies in education, masculinity and postcolonial theory. The field of disability studies in education focuses on the application of the social model of disability in an education context. The theories of masculinity look at the social construction of the male identity, and the postcolonial theory explores the colonial legacy of the study context. The data were collected from eight fathers, six mothers, nine teachers and six disabled learners using individual interviews, key informant interviews, draw-and-tell interviews, focus group discussions, document review and field notes. The data were analysed thematically. Three themes emerged from the data analysis: influence of cultural norms and values on father involvement, fathers' concerns in educating disabled children, and impact of understanding disability on father involvement. It was established that the intersection between patriarchy and masculinity affects normative gender roles that influence father involvement in the education of disabled children in a dynamic context. It was also evident that the cost of disability is greater than that of nondisability and this influences how fathers are involved in the education of their disabled children. Additionally, fathers wanted the best for their disabled children but different views about the purpose of the special school affected their involvement in the education of their disabled children. Furthermore, the meaning of disability influenced father involvement in the education of disabled children. It was concluded that father involvement in the education of disabled children in this African setting was complex and presented itself in ways that were different from what formal western education expected. This study provides critical new knowledge on how father involvement in the formal education of disabled children is constructed within the context of a specific school in an African setting. The new knowledge not only adds to the current limited evidence in the literature on father involvement, but also might assist education stakeholders like ministries of education and development workers in advancing best practice regarding implementation of family support structures for disabled children's education in Africa.

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Carrellas, Ann. "Sexual Victimization and Intellectual Disabilities among Adolescents Involved in Child Welfare." Thesis, Wayne State University, 2019. http://pqdtopen.proquest.com/#viewpdf?dispub=10829493.

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Adolescents involved in child welfare systems have a greater risk of sexual victimization than their general population peers as well as a greater prevalence of intellectual disabilities. This study uses complex survey data from the second National Survey of Child and Adolescent Wellbeing to examine risk and protective factors associated with sexual assault and transactional sex among older adolescents involved in the child welfare system. This research examines the potential role of intellectual ability as a risk factor for these forms of victimization and social support and community environment as protective factors. Using a subset of data from older adolescents between ages 18 to 19.5 years, this study focuses on the period when adolescents transition from the child welfare system to become independent adults. Bivariate logistic regression models were used to examine these relationships. Results indicate 2.5% of the adolescents experienced a sexual assault in the past 12 months and 3.9 % had engaged in transactional sex in the past 6 months. The mean intelligence score for this group of adolescents is one standard deviation below average. Being female was associated with experiencing a sexual assault or rape in the past 12 months. Lower intellectual ability scores were associated with greater odds of engagement in paid sexual activity in the last 6 months. This study highlights the vulnerability of adolescents to sexual victimization as they transition from child welfare systems involvement and the need for enhanced supports and community connections as they exit child welfare services.

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McKinney, Victor John. "The challenges facing parents and teachers of learners with intellectual disabilities in the transition from primary to high school in South Africa." Master's thesis, University of Cape Town, 2008. http://hdl.handle.net/11427/8120.

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Includes abstract.
Includes bibliographical references (leaves 87-93).
The purpose of this study was to explore the experiences of teachers and parents of learners with intellectual disabilties as the learners' progress to high school. In so doing, an understanding of how they coped with characteristics unique to inclusive education and adolescence in South Africa was gained.

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Davy, Laura Kathryn. "People with Intellectual Disability and the Relational Self: Redrawing the Moral Boundaries of Personal Autonomy." Thesis, The University of Sydney, 2017. http://hdl.handle.net/2123/17577.

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Accounts of autonomy within liberal theory seek to promote individual self-determination and the dignity of all persons, but have also been used to demarcate the boundaries of personhood and exclude people with intellectual disability. Critically engaging with how theories and policies that promote autonomy position people with intellectual disability can illuminate the shortcomings of individualistic approaches to autonomy and extend the accounts of relational autonomy developed by feminist theorists. Drawing on feminist conceptions of the relational self, I show that the capacity to exercise personal autonomy is dependent upon supportive relationships and enabling environments, for people with intellectual disability and for all persons. While this dependency applies to all persons, the particular challenges faced by people with intellectual disability in exercising autonomy requires us to expand the moral boundaries of our conceptions of personal autonomy. To this end, the thesis critically revises the concepts of self-representation and moral responsibility that are central to standard models of personal autonomy, by 1) exploring ethical modes of speaking with and for marginalised persons and groups, and 2) developing a political conception of care that understands the enablement of autonomy as a collective, social responsibility. It also interrogates current disability advocacy and disability policy, which in emphasising the centrality of the personal autonomy of people with disability, face the task of translating and operationalising a highly contested and emergent concept. Woven between the chapters of this thesis are short pieces of relational narrative that explore my personal positioning and relationship with my younger sister who has intellectual disability. These narratives seek to evoke the ongoing relational negotiation and renegotiation of dependency, interdependency, and individuality through which personal agency and autonomy emerge, a dynamic that needs to be supported by wider social actors and institutions in order to enable people with intellectual disability to flourish as individuals.

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Chaloupka, Evan M. "Cognitive Disability and Narrative." Case Western Reserve University School of Graduate Studies / OhioLINK, 2018. http://rave.ohiolink.edu/etdc/view?acc_num=case1522063781558934.

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Jervis, Sarah Jenny. "Exploring the experiences of the sibling of a child with an intellectual disability." Thesis, Stellenbosch : Stellenbosch University, 2008. http://hdl.handle.net/10019.1/21630.

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Thesis (MEdPsych)--Stellenbosch University, 2008.
ENGLISH ABSTRACT: This study is aimed at gaining insight into the experiences of siblings of an individual with an intellectual and physical disability. Attaining greater insight into their lived reality, their feelings and concerns could make it possible to provide appropriate support. The review of selected literature provides information on many aspects of the these siblings' experience. Although many studies are quantitative in their approach, the literature review provides relevant and useful findings and inferences which were used to support and substantiate findings. During this qualitative study, which is situated within an interpretive phenomenological paradigm, four participants between the ages of eight and sixteen years were interviewed using semi-structured interviews. This format of interview allowed participants to use their own words to express their personal experiences. The results showed that siblings have both positive and negative experiences when another sibling has an intellectual disability. Other common difficulties include embarrassment, guilt, and the experience of differential treatment. Positive experiences and competencies include love and acceptance, personal growth, maturity, pride in siblings accomplishments, and appreciation for one's sibling. Several experiences were congruent with those mentioned in the literature. The insights into the experiences this study provides has implications for the development and provision of sibling support programmes and interventions. At present, state group support programmes for siblings are not provided within the Western Cape area. The interventions and assistance that do exist seem to be provided by the private sector only. Support can prove very costly, which means that it is not accessible to many who require it. Sibling workshop groups could provide a valuable support alternative to a currently "unsupported" group, the siblings.
AFRIKAANSE OPSOMMING: Hierdie studie poog om insig te verkry in die ondervindings van die broers en susters van 'n kind met intellektuele en fisiese gestremdhede. Beter insig in die realiteit van hul leefwyse, hulle gevoelens en bekommernisse kan beter ondersteuning aan hulle moontlik te maak. Die ondersoek van geselekteerde literatuur voorsien inligting rakende vele aspekte van die ondervindings van hierdie kinders. Alhoewel baie van die studies kwantitatief in hul benadering is, het die bestaande literatuur tog relevante en bruikbare bydraes en gevolgtrekkings verskaf wat gebruik kon word om bevindings te bevestig en te staaf. Hierdie kwantitatiewe studie het plaasgevind in 'n verklarende fenomenologiese paradigma en vier semi-gestruktureerde onderhoude is gevoer met deelnemers tussen die ouderomme van 8 jaar en 16 jaar. Hierdie formaat van onderhoudvoering dra by dat deelnemers hulle gevoelens in hul eie woorde uitdruk. Die bevindings het gewys dat broers/susters beide positiewe en negatiewe ondervindings van kinders met 'n intellektuele gestremdheid het. Ander algemene probleme sluit in skaamte, skuldgevoelens en die gevoel van gedifferensieerde behandeling. Positiewe ondervindings en vaardighede van broers en susters sluit liefde en aanvaarding, persoonlike groei, volwassenheid, trots op die broers/suster se bekwaamheid en die waardering van so 'n broer/suster in. Verskeie van die ondervindings het ooreengestem met bevindings wat in die literatuur gevind is. Die insigte in hierdie ondervindings wat deur hierdie studie voorsien word het implikasies vir programme en intervensies wat ondersteuning aan hierdie kinders bied. Tans is daar nie sodanige staatsgefinansierde ondersteuningsprogramme in die Wes-Kaap area nie. Die intervensies en ondersteuning wat wel beskikbaar is word slegs in die privaatsektor aangebied. Ondersteuning kan baie duur wees, wat beteken dat dit vir baie kinders wat dit nodig het, ontoeganklik is. Ondersteuningsgroepwerkswinkels kan 'n waardevolle alternatief bied vir die "nieondersteunde" groep, die kinders.

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Gupta, Shelly. "Inclusion in Recreational Programs| A Case Study of Youth with Intellectual Disabilities Participating in Kids Included Together (KIT) Affiliated Programs." Thesis, California Institute of Integral Studies, 2018. http://pqdtopen.proquest.com/#viewpdf?dispub=10810227.

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The purpose of this qualitative case study was to determine how to make out-of-school programs more inclusive of youth with intellectual disabilities (ID) by analyzing inclusive out-of-school programs affiliated with Kids Included Together (KIT). KIT is an organization that provides training and resources for meaningfully including children with and without disabilities into community-based, out-of-school programs. The study examined the perspective of current and former youth with and without ID, their parents, KIT-affiliated staff members, and KIT’s staff members via interviews. Observations of youth participating in recreational activities were completed. The sample consisted of 27 participants. Participants yielded 9 salient themes with multiple categories that emerged from the data. Each theme served as elements of inclusion toward meaningful inclusion of individuals with ID in out-of-school programs. Participants addressed key elements of inclusion required to create social change in out-of-school programs, educational settings, and community programs. The study also highlighted the barriers associated with inclusion and discussed specific strategies to address these challenges based on findings of this research. The knowledge gained from the study may have relevance for community-based programs that are interested in fostering a supportive and inclusive organizational culture. This study may raise awareness and training on how to support individuals with ID and it may provide opportunities to build resources and additional inclusive programs. The study provides practitioner recommendations on how youth with and without disabilities, their parents, staff members of out-of-school programs, school teachers, staff and administrators can implement inclusive practices in the community, out-of-school programs and educational settings.

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McGinley, Jacqueline Marie. "A Retrospective Study of the Last Year of Life for People with Intellectual Disabilities in Community Residences." Thesis, State University of New York at Buffalo, 2018. http://pqdtopen.proquest.com/#viewpdf?dispub=10823247.

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Death is inevitable for all; however, the nature of that death varies significantly across subsets of the American population with the opportunity to die well often reserved for the privileged and abled. In the last ten years, there has been increasingly more attention paid to issues surrounding serious illness and end-of-life care for adults with intellectual disabilities (IDs). However, care for this population remains fraught with complex challenges and wanting for best practices and standards. Further, research seeking to identify the complexity of issues faced in the provision of end-of-life care for this population, particularly in the United States, is scarce and often biased toward the perspective of caregivers. This multiple-case study sought to explore and describe the illness trajectory and differential end-of-life experiences of adults with IDs within the last year of life in diverse community residences operated by one provider agency in New Jersey. Retrospective data from three sources (records, staff, surrogates) was collected sequentially and triangulated via within and cross-case analyses. This study offers a meaningful contribution to the extant literature by elucidating the last year of life for adults with IDs in community residences. It offers insights into how people with co-occurring IDs and serious illness diagnoses experience their final year, month, week, and moments of life. This study integrated staff and surrogate perspectives with archival data to illustrate the differential experiences that facilitate and impede the ability of people with IDs to die well.

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Rivera, Christopher, Joshua Baker, Ginevra Baker, Pamela J. Mims, and Tracy Spies. "Building a Culturally Responsive Framework for Students with Intellectual Disability to Increase Postsecondary Outcomes." Digital Commons @ East Tennessee State University, 2017. https://dc.etsu.edu/etsu-works/164.

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This session will provide a framework for assisting culturally and linguistically diverse students with moderate-severe intellectual disability. Strategies for general curriculum access, academic instruction, meaningful collaboration with families and educators, as well as suggestions for enhancing postsecondary outcomes will be provided.

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Handsome, Kimberly S. "The Experiences that Promote Success for Students with Intellectual Disability in Postsecondary Education." VCU Scholars Compass, 2018. https://scholarscompass.vcu.edu/etd/5653.

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This in-depth qualitative, phenomenological (Smith & Fowler, 2009) research study attempted to understand the experiences of young adults with intellectual disability who had completed a 2-year, inclusive postsecondary education program. 13 participants (4 former students with ID, 5 parents, and 4 Postsecondary Education staff members) participated in semi-structured interviews. Interviews were coded to provide themes amongst each individual group of participants. A document review was also conducted to better understand the program components and add validity to self-reports from interviews. Results were analyzed and used to provide implications for future research and program development.

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Sanchez, William. "Effect of Mindfulness-Based Stress Reduction on Aggression in Adults with Intellectual Disabilities." ScholarWorks, 2019. https://scholarworks.waldenu.edu/dissertations/6662.

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Individuals with intellectual developmental disabilities occasionally exhibit challenging behaviors through forms of aggression. Interventions, such as cognitive behavioral therapy, and applied behavioral analysis, have all been shown to be effective in reducing symptoms of aggression. This quantitative study used a secondary analysis of clinical records from an agency that provides day treatment services for adults with intellectual disabilities. To assess the effectiveness of a mindfulness-based stress reduction (MBSR) program in reducing aggression in this population, 18 individuals with various levels of intellectual disabilities participated in an 8-week MBSR while an additional 18 participants served as the wait list control group and received the same intervention soon after the study was completed. The study examined whether a mindfulness-based intervention can reduce aggression based on the Modified Overt Aggression Scale (MOAS) and also increase participants' awareness of meditation based on the Child Adolescent Mindfulness Measure (CAMM). A 2x2 ANOVA was used to determine differences between measures, pretest and posttest. Results indicated no differences in aggression before and after the administration of the mindfulness-based intervention for either the experimental or control group. However, CAMM scores indicated that participants came to understand the concept of mindfulness, even though this did not yield measurable changes in their behavioral outcomes. This study will inform clinicians about mindfulness in programs for adults with disabilities and research indicates that MBSR is a program which is beneficial for adults with developmental disabilities and may serve as an additional coping mechanism in dealing with aggression.

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Winges-Yanez, Nick. "A Foucaultian Discourse Analysis of Person-Centered Practice Using a Genealogical Framework of Intellectual Disability." PDXScholar, 2018. https://pdxscholar.library.pdx.edu/open_access_etds/4505.

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A genealogical framework highlights the important role sexuality has played in constructing the current label of intellectual disability (ID). The genealogical framework is meant to replace the social, medical, and/or rights-based model(s) that have dominated social work and social services working in the disability field. With this framework, or perspective, I use a Foucaultian discourse analysis to read through seminal texts regarding person-centered practice. Person-centered practice is the foremost intervention used in social work, and other disciplines, to work with people labeled with intellectual disability. My research questions focus on what is revealed about ID in PCP through a genealogical framework and what implications do these discoveries hold for sexuality education and social services, including social workers? Predetermined concepts taken from the genealogical framework are used in the Foucaultian discourse analysis. These concepts (subject, government, biopower, and normalization) provide insight into how ID has been constructed and maintained through the practice of person-centered processes. Paradoxes emerge throughout the analysis, providing space for productive resistance by professionals working in sexuality education and social services to improve equity for people labeled with intellectual disability, specifically regarding their sexuality and healthy expression of it.

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Vizenor, Katie Virginia. "Binary Lives| Digital Citizenship and Disability Participation in a User Content Created Virtual World." Thesis, State University of New York at Buffalo, 2014. http://pqdtopen.proquest.com/#viewpdf?dispub=3613110.

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Digital Citizenship is a concept typically used in discussions of how technology impacts our relationships with others and our physical world communities. It is also used to describe ways that we can leverage our technology use and skill to make our communities and nations better and stronger. Educators are now teaching "good digital citizenship" as part of a larger civics curriculum.

But, there is a second, emerging concept that I refer to as platform specific digital citizenship. I define this platform specific citizenship as the deep and abiding commitment and sense of responsibility that people develop in relation to a particular technology, such as software or technology brand. It may also refer to the ideas that people express in regard to how technology should ideally be used and what rights and responsibilities it requires of its adherents.

Massively Multiplayer Online Worlds (MMOWs) are one place researchers are finding this deep, platform specific digital citizenship emerging. These are persistent digital universes where people from all over the world develop online personas, leadership structures, discussion forums, and business and non-profit entities. The ability and extent to which this online organization is possible is largely due to the underlying structure, rules and allowances of the world of which people choose to be a part.

One online world, Second Life, has a large, active and vocal disabled population. They have committed to this environment because of the unique opportunities and freedoms that it provides. As a user content created environment, residents, as Second Life participants are referred to, are given an unprecedented amount of freedom to create the kind of experience they want. This may involve developing relationships and projects with other disabled residents. It can also involve exploring other aspects of themselves and their interests that are often neglected in their real lives due to social exclusion, and/or lack of financial and physical access.

Most of the research and popular media examinations of disability in Second Life centers on participation in disability specific communities or the benefits of identity exploration through avatar design. But, the reasons disabled people stay here is much broader and varied than what this limited discussion suggests. Commitment to Second Life is strong precisely because disability community commitment and disability expression are not the only options but exist among a wide range of choices. Moreover, the expression of disability and use of such mediated environments is constantly debated in both word and deed.

This dissertation explores the concept of digital citizenship and why people that identify as disabled in real life are attracted to committed participation in virtual worlds, in particular, Second Life. What opportunities and rights are disabled people afforded here through the technology structure? What are the avenues of entry into the Second Life community, and what does the variety of these entry points and special interest sub-communities tell us about what is important to them? How is commitment debated and deepened through the use of public spaces and forums? And, what can researchers, public health and information professionals learn from these features that can improve their own outreach?

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Höglund, Berit. "Pregnancy, Childbirth and Midwifery Care among Women with Intellectual Disability in Sweden : Epidemiological and Descriptive Studies." Doctoral thesis, Uppsala universitet, Institutionen för kvinnors och barns hälsa, 2012. http://urn.kb.se/resolve?urn=urn:nbn:se:uu:diva-183388.

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The overall aim of this thesis was to investigate pregnancy and childbirth in women with intellectual disability (ID), in Sweden, the health of their newborns and midwifery care for these women. Two register studies and two descriptive studies are included. Pregnancy and birth outcomes as well as data on the newborns’ health were examined by linking data from the National Patient Register and the Medical Birth Register (I-II). The women’s experience of pregnancy and delivery was investigated with repeated interviews (III). Midwives’ knowledge of, experience of and attitudes towards pregnancy and childbirth in women with ID were evaluated with questionnaires (IV). Mothers with ID were more often teenagers, smoked more during pregnancy and had more Caesarean Sections. Their children had a higher proportion of pre-term births, were small-for-gestational-age, stillborn or died in the perinatal period. The women with ID struggled to attain motherhood and feared to lose custody of the child. The pregnancy was seen as a happy event, even though relatives did not always approve. Parent education was considered important, but not adequately adapted to their needs. The birth process was overwhelming and difficult to understand, but the child was welcomed with warm feelings, and breastfeeding was natural. Midwives stated it was different to care for women with ID and requested additional knowledge. The majority of midwives affirmed that women with ID could not manage the mother role satisfactorily, and one-third expressed that women with ID should refrain from having children. A majority of the midwives considered that the children should grow up with the parents with support from family and society, but one out of five stated that the children should grow up in foster care. Conclusion: Women with ID and their children should be considered as risk groups in pregnancy and childbirth. Professionals in maternity services need to elucidate their knowledge and skills for counselling and supporting this particular group of pregnant women in pre-, intra- and post-partum care.

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Martin, Heather M. "An Analysis of Sexual Assault Support Services for Women who have a Developmental Disability." Thesis, Université d'Ottawa / University of Ottawa, 2015. http://hdl.handle.net/10393/32518.

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Guided by feminist social constructionism, intersectionality and the social construction of disability, this thesis investigates the ways that sexual assault support workers and disability support workers in a medium-sized Ontario city construct women survivors of sexual assault who have a developmental disability, and how their service delivery reflects these constructions. The data were collected through semi-structured interviews with sexual assault support workers and disability support workers. Results suggest that these workers construct their service users in multiple, sometimes conflicting, ways, resisting and reproducing several ableist and sexist social constructions. Furthermore, sexual assault support workers and disability support workers often construct their service users in opposing ways. This reveals a divide between the two types of organizations. Bridging this gap may have the potential to improve services for women survivors of sexual assault who have developmental disabilities.

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Eadens, Danielle M. "Police officers' perceptions regarding persons with mental retardation." [Tampa, Fla] : University of South Florida, 2008. http://purl.fcla.edu/usf/dc/et/SFE0002498.

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Coetzee, Jacobus (Ockert). "Caregiving experiences of South African mothers of adults with intellectual disability who display aggression: clinical case studies." Doctoral thesis, University of Cape Town, 2016. http://hdl.handle.net/11427/23048.

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Background: Adults who have an intellectual disability (ID) often continue to live with their parents long after their siblings have left home. While an increasing body of research has described positive parental experiences, research has also found that parents of adults who have ID and behavioural difficulties are more vulnerable to develop parental stress and depression. Aggression is one of the most difficult forms of problem behaviours to manage and could have a negative impact on the parent-child relationship, the child's social inclusivity and the psychological well-being of parents. Method: A case-based psychotherapy design was used to explore maternal experiences among mothers of adults with ID and aggression who access a specialised mental health service in Cape Town. Psychotherapy was used with six participants to attempt to reduce parental stress and other negative psychological states. In an area of research that has received scant attention in South Africa, the study extensively describes the psychotherapy process and the role of contextual factors in the lives of the participating mothers. The study used a mixed methods design which included psychometric measurements that were conducted at various intervals of intervention. Thematic analysis was used in all the case studies and interviews were scheduled before and after completing psychotherapy. External credibility was enhanced through the use of different qualitative strategies that included peer supervision and reflexivity. Findings: Besides elevated parental stress, the majority of participants presented with symptoms of depression and other mental health problems that varied according to their individual profiles. Although parental stress showed a discernible relationship with the child's behavioural difficulties, other significant life stressors contributed to maternal stress and depressive symptoms. Psychotherapy produced only modest improvement of parental stress among some of the participants. However, therapeutic input appeared to be more effective in reducing depressive symptoms among the majority of mothers. Critical reflection and discussion are centred on the clinical implications and meaning of findings on a psychological level.

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Tucker, Joan A. "Local strategies in a global network : disability rights in Jamaica." [Tampa, Fla.] : University of South Florida, 2007. http://purl.fcla.edu/usf/dc/et/SFE0002117.

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Wojcik, Andrew J. "Developing Conceptual Understanding and Procedural Fluency in Algebra for High School Students with Intellectual Disability." Thesis, Virginia Commonwealth University, 2017. http://pqdtopen.proquest.com/#viewpdf?dispub=10681699.

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Teaching students with Intellectual Disability (ID) is a relatively new endeavor. Beginning in 2001 with the passage of the No Child Left Behind Act, the general education curriculum integrated algebra across the K-12 curriculum (Kendall, 2011; National Governors Association Center for Best Practices & Council of Chief State School Officers, 2010), and expansion of the curriculum included five intertwined skills (productive disposition, procedural fluency, strategic competence, adaptive reasoning, and conceptual understanding) (Kilpatrick, Swafford, & Findell, 2001). Researchers are just beginning to explore the potential of students with ID with algebra (Browder, Spooner, Ahlgrim-Delzell, Harris & Wakeman, 2008; Creech-Galloway, Collins, Knight, & Bausch, 2013; Courtade, Spooner, Browder, & Jimenez, 2012; Göransson, Hellblom-Thibblin, & Axdorph, 2016). Most of the research examines the development of procedural fluency (Göransson et al., 2016) and few researchers have explored high school level skills.

Using a single-case multiple-baseline across participants design, the study proposes to teach two algebra skills to six high school students with ID, creating an equation (y = mx + b) from a graph of a line and creating a graph from an equation. The six high school students with ID will be recruited from a school district in central Virginia. The intervention package modeled after Jimenez, Browder, and Courtade (2008), included modeling, templates, time delay prompting, and a task analysis. Results showed that all six individuals improved performance during intervention for the target skills over baseline; results also indicated that in three out of the six cases some generalization to the inverse skill occurred without supplemental intervention. The ability of individuals with ID to generalize the learning without intervention provides some evidence that individuals with ID are developing conceptual understanding while learning procedural fluency.

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Sango, Precious N. "Spirituality and people with intellectual disabilities : comparing the significance of spirituality in faith and non-faith based care services." Thesis, University of Kent, 2016. https://kar.kent.ac.uk/55429/.

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Background and Aim: The spiritual lives of people with ID has been under researched (Swinton, 2002; Turner et al., 2004) and as yet, no research has been carried out comparing faith-based and non-faith-based services for people with ID. This research explores and compares a faith-based care organisation with a non-faith based care organisation with the aim of investigating the significance of spiritual/religious based principles as modes of care to the quality of life of individuals, acknowledging that non-faith based care providers may provide ‘a spiritual/religious environment’, explicitly or non-explicitly. Method: A mixed-method design using both qualitative and quantitative methods was utilised. Six months were spent volunteering within each community in order to engage in participant observation of both care organisations. Quantitative methods included the Quality of Life Questionnaire; Self-esteem Scale and the Social Network Guide in addition to semi-structured interview schedules. Results: People with ID were found to enjoy spiritual/religious based activities, with spirituality being an important aspect of their quality of life. Staff from the non-faith based service provided religious spiritual care mainly through church attendance, whilst staff from the faith-based service provided both religious and non-religious spiritual care. Staff from both care services reported that practical implementation of spiritual/ religious care tended to be overridden by legalistic administrative tasks, communication issues and staff availability. Conclusion: There is a need for ID services to not only acknowledge but also facilitate spirituality in the lives of people with ID.

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Noonan, Michael. "Laughing & disability : comedy, collaborative authorship and Down Under Mystery Tour." Thesis, Queensland University of Technology, 2010. https://eprints.qut.edu.au/48647/1/Michael_Noonan_Thesis.pdf.

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This thesis is an exploration of representation, authorship and creative collaboration in disability comedy, the centre piece of which is a feature-length film starring, co-created and co-written by three intellectually-disabled people. The film, entitled Down Under Mystery Tour, aims to entertain, and be accessible to, a mainstream audience, one that would not normally care about disability or listen to disabled voices. In the past, the failure of these voices to reach audiences has been blamed on poor training, marginal timeslots and indifferent audiences. But this project seeks an alternative approach, building collaboration between disabled and non-disabled people to express voice, conceive, construct and produce a filmed narrative, and engage willing audiences who want to listen.

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Brown-Hall, Earlie Simone. "Social-sexual Autonomy, Person-Centered Planning, and Individuals with Intellectual Disabilities." ScholarWorks, 2018. https://scholarworks.waldenu.edu/dissertations/5988.

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Abstract Sexual autonomy is the right and capacity of each individual to decide and make choices about whom, when, and how they express themselves sexually. Individuals with intellectual disabilities have frequently been marginalized, oppressed, and left out of discussions about sexuality placing them at risk of abuse, unsafe sex practices, and unplanned pregnancies. The purpose of this qualitative study was to examine the usefulness of person-centered planning techniques in the development of an individual service plan that address the social-sexual needs of individuals with intellectual disabilities. Purposeful sampling was used to select 8 participants for this study. Specific participants were selected because they possessed personal perspectives and experiences regarding person-centered planning techniques. Data collection included semi-structured, open-ended questions with face-to-face interviews and document review. Code development began with systematic organization of narrative data that was thematically analyzed using open-coding. Findings showed the person-centered individual service plan is a tool that can empower and promote social-sexual autonomy for individuals with intellectual disabilities if service and support administrators initiate a conversation about social-sexual activity. Implications for social change include increased advocacy for sexual autonomy, greater social acceptance of relationships, inclusive sexuality programming for individuals with intellectual disabilities and professional development training for service and support administrators.

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Umb-Carlsson, Õie. "Living Conditions of People with Intellectual Disabilities : A Study of Health, Housing, Work, Leisure and Social Relations in a Swedish County Population." Doctoral thesis, Uppsala universitet, Psykiatri, Ulleråker, Akademiska sjukhuset, 2005. http://urn.kb.se/resolve?urn=urn:nbn:se:uu:diva-6143.

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The general aim of this thesis is to describe mortality, health and living conditions in an administratively defined county population of people with intellectual disabilities born between 1959 and 1974 (N=213). The living conditions of persons with intellectual disabilities were compared with those of the general population. Moreover, the reports of relatives and staff were compared on the living conditions of people with intellectual disabilities. Information on the living conditions of persons with intellectual disabilities was provided by proxy (relative and staff) questionnaire reports and national welfare statistics conducted by Statistics Sweden (SCB). Medical examination and medical case records were used to obtain data on health and medical services. People with intellectual disabilities lived in the community and took part in numerous common recreational and cultural activities. However, the comparison with the general population indicated clear differences in living conditions, particularly regarding employment and social life. In contrast, surprisingly little variation in living conditions was found in people with intellectual disabilities, despite varying ages and a wide range of level of disabilities. In addition, gender related differences of persons with intellectual disabilities were few when compared with those found in the general population. A wide range of physical and mental health problems were identified in the group with intellectual disabilities. Although a majority of persons with intellectual disabilities had access to a family doctor and attended regular health checks, a number of needs of specialist examinations were identified indicating shortcomings in the quality of health care. Analyses indicated differences in the reports of relatives and staff on living conditions of most domains included in the questionnaire. In general, disagreement was higher on subjective than on objective items. Relative and staff responders contribute dissimilar information that is related to varying viewpoints and different types of information.

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Chanias, Angelos. "The effects of exercise programming on health-related physical fitness of individuals with an intellectual disability : a meta-analysis of studies." Thesis, National Library of Canada = Bibliothèque nationale du Canada, 1997. http://www.collectionscanada.ca/obj/s4/f2/dsk2/ftp03/MQ29535.pdf.

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Wiener, Diane Rochelle. "Narrativity, Emplotment, and Voice in Autobiographical and Cinematic Representations of "Mentally Ill" Women, 1942-2003." Diss., The University of Arizona, 2005. http://hdl.handle.net/10150/195156.

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This dissertation presents an historical overview of the interdependent representations of gender, class, ethnicity, race, nationality, sexuality, and (dis)ability in a selection of films and first-person written autobiographical texts from the 1940s to the early twenty-first century. Cinematic and written autobiographical representations of “mental illness” reflect and shape various models of psychological trauma and wellness. I explore the ways that these two genres of representation underscore, exert influence upon, and interrogate socio-cultural understandings and interpretations of deviance and normalcy, madness and sanity, and pathology and health. Some models of health and illness carry more ideological weight than others, and thus differentially contour public policy formation and the materiality of people’s daily lives. My project is distinct from other kinds of scholarship on the subject of women’s “madness.” Whereas scholarship has been written on “madness” and cinema, and on “madness” and autobiography, this related academic work has not consistently drawn linkages between multiple genres or utilized interdisciplinary methodologies to critically explore texts. Feminist scholars who address the interconnections between autobiographies and cinematic representations often pay only limited attention to psychiatric survivors. I draw parallels and distinctions between these genres, based upon my training in social work, cultural studies, film and autobiography theory, medical and linguistic anthropology, and disability studies. My perspective hinges upon my longstanding involvement with and commitment to the subject of women’s “madness” in both personal and professional arenas.

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Diáz, Dánica M. "Comparing the Effectiveness of Behavioral Contracts That Use Function Based Reinforcers Versus Highly Preferred Items for Attention Maintained Behaviors." Scholar Commons, 2010. https://scholarcommons.usf.edu/etd/1614.

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Behavioral contracts were used to reduce the socially inappropriate and stigmatizing behaviors of adult men diagnosed with an intellectual disability. All three participants were residing in an intensive residential habilitation facility and receiving 24 hour supports due to the intensity of their problem behaviors. A multiple baseline across subjects with a series of reversals within the intervention phase was used to compare and evaluate the effectiveness of two types of behavioral contracts: one based on the function of the behavior and the other based on highly preferred items. Brief functional analyses were conducted to determine the function of the participants' problem behavior and multiple stimulus without replacement preference assessments were conducted to establish a hierarchy of highly preferred items. Based on the results of the brief functional analyses, all three participants' problem behaviors were likely to be maintained by attention. Results showed that the behavioral contracts resulted in a substantial decrease in maladaptive behaviors for all of the participants and, conversely, an increase in the use of functionally equivalent replacement behaviors; one of the participants showed differentiation between the treatment conditions, indicating that a functional approach might be more beneficial for some individuals.

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Stjernholm, Linda. "Som alla andra eller lika ovanlig som alla andra? : Framställning av intellektuell funktionsnedsättning i svenska bilderböcker." Thesis, Högskolan i Halmstad, Akademin för hälsa och välfärd, 2018. http://urn.kb.se/resolve?urn=urn:nbn:se:hh:diva-38629.

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Picturebooks with characters that have an intellectual disability provides an opportunity for children with and without disabilities of their own to identify with the story. The study examines a selection of five contemporary Swedish picturebooks for children that features characters with an intellectual disability. This study explores how ideologies of normalisation and inclusion influence the way these characters are presented and represented in text and imagery. Drawing from critical discourse analysis the aim of this text is to show if power relations in the story can provide different subject positions for the reading child to take. The results of the analysis show authentic and varied portrayals of characters with intellectual disability. There were two different kind of discourses on normality evident in the picture books: A child like everyone else and different like everyone else. The discourse of a child like everyone else means a perspective where the character with an intellectual disability is portrayed without a focus on the disability. This results in a normalization of the presence of a person with an intellectual disability but neglects to portray the specific experiences that character may have when it comes to their disability. The discourse of being different like everyone else gives a perspective on intellectual disability where difference is normal and part of everyday life. This perspective portrays disability and diversity as part of a normality.

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Karam, Simone de Menezes. "Deficiência intelectual em uma coorte de nascimentos : prevalência, etiologia e determinantes." reponame:Biblioteca Digital de Teses e Dissertações da UFRGS, 2014. http://hdl.handle.net/10183/96641.

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Os objetivos deste estudo foram estimar a prevalência da deficiência intelectual aos 7-8 anos de idade em uma coorte de nascimentos, através de investigação genética clínica e laboratorial e, também, investigar a etiologia da mesma e os fatores associados. Os participantes faziam parte de uma coorte acompanhada desde o nascimento e foram incluídos neste estudo por apresentar, em acompanhamentos anteriores, suspeita de atraso no desenvolvimento segundo o Teste de Rastreamento de Battelle, QI abaixo de 70 segundo a escala WPPSI e/ou problemas no comportamento observados durante entrevista. Das 4231 crianças da Coorte de 2004 de Pelotas, 214 foram selecionadas para a avaliação genética que constou de: anamnese, exame físico e dismorfológico e coleta de sangue e urina quando indicado. Criou-se um banco de dados incluindo variáves desta avaliação e dos acompanhamentos anteriores da Coorte, tais como: variáveis da gestação e do nascimento, sociodemográficas e relativas à saúde e estimulação da criança. Os dados foram processados no pacote estatístico Stata 13.0 e foi utilizada análise de variância (ANOVA). Foi considerada como tendo deficiência intelectual a criança que, além de apresentar um QI abaixo de 70, apresentava também problemas no comportamento adaptativo. Cento e setenta crianças das duzentas e quatorze selecionadas no início do estudo foram diagnosticadas com deficiência intelectual e classificadas em cinco grupos etiológicos. A maior parte das crianças (44,4%) foi classificada como tendo deficiência intelectual devida a causas não-biológicas, ou seja, ligada a fatores ambientais. O segundo maior grupo (16,6%) foi o grupo de crianças com deficiência intelectual genética que incluiu crianças com síndrome de Down, microdeleções e patologias autossômicas dominantes e patologias multifatoriais. A seguir, crianças com sequelas neonatais (13,3%) e deficiência intelectual associada a outras doenças (13,3%), como epilepsia e TDAH. O menor grupo foi o idiopático, constituído por crianças que, mesmo após investigação clínica e laboratorial, permaneceram sem diagnóstico definido. A prevalência de deficiência intelectual foi de 4,5% e a prevalência de deficiência intelectual genética de 0,66%. Apesar de algumas limitações como a identificação e seleção dos casos aos 4 anos para uma avaliação aos 7-8 anos, é importante considerar que, por ser um estudo de base populacional, com alta taxa de acompanhamento (92,0%), isto minimiza o viés de seleção. O fato dos dados serem colhidos no momento ou em um curto intervalo de tempo, considerando os diversos acompanhamentos, minimiza o viés de memória. Fora do mundo desenvolvido, são raros os estudos de coorte que avaliaram deficiência intelectual, seus fatores de risco e sua etiologia. Grande parte destes estudos, mesmo os conduzidos em países de renda alta, avaliaram a prevalência, mas não a etiologia. Os dados sugerem que boa parte destes casos poderia ser prevenida, principalmente considerando uma etiologia não-biológica, caso existissem, além do rastreamento de problemas no desenvolvimento, estratégias de intervenção educacional e de saúde.
The aims of this study were to estimate the prevalence and etiology of intellectual disability at 7-8 years of age in a birth cohort through clinical and laboratory investigation and associated factors. Participants were part of a cohort followed from birth and were included in this study due to suspected developmental delay according to the Battelle Screening Test, IQ below 70 according to WPPSI scale and / or behavior problems observed during the interview in previous follow-ups. Of the 4231 children in the 2004 Pelotas birth cohort, 214 were selected for genetic evaluation which included anamnesis, physical and dysmorphological examination and collection of blood and urine when indicated. A dataset including variables from this evaluation and the previous cohort of follow-ups such as variables of pregnancy and birth, social demographic and health-related and stimulation of the child. Data were analyzed using Stata version 13.0. Analysis of variance (ANOVA) was performed. To be considered as having intellectual disability the child that presenting an IQ below 70 and problems in adaptive behavior. One hundred and seventy children from two hundred fourteen selected at baseline were diagnosed with intellectual disability and they were classified into five etiologic groups. Most children (44.4 %) were classified as having intellectual disability due to no biological causes, i.e., linked to environmental factors. The second largest group (16.6%) was the group of children with genetic intellectual disability which included children with Down syndrome, microdeletions and autosomal dominant and multifactorial diseases. Children with neonatal sequelae accounted for 13.3% and intellectual disability associated with other diseases such as epilepsy and ADHD also accounted for 13.3%. The smallest group was idiopathic composed of children who even after clinical and laboratory investigation remained without a definite diagnosis. The prevalence of intellectual disability was 4.5 % and the prevalence of genetic intellectual disability 0.66 %. Despite some limitations such as the identification and selection of cases to four years for an assessment at 7-8 years it is important to consider that it is a population-based study with high follow-up rate (92.0 %) which minimizes selection and information bias. As data were collected in time or in a short period of time considering the several follow-ups minimize recall bias. Outside the developed world few cohort studies assessed intellectual disabilities, their risk factors and etiology. Most of these studies even those conducted in high-income countries assessed the prevalence but not the etiology. The data suggest that part of these cases could be prevented specially considering the non-biological etiology if there were screening of developmental delay and intervention strategies on health and educational bases.

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Mims, Pamela J., Carol Stranger, Julie A. Sears, and Wendee B. White. "Applying Systematic Instruction to Teach ELA Skills Using Fictional Novels in an iPad App: Results from a Study on Students with Significant Disabilities." Digital Commons @ East Tennessee State University, 2018. https://dc.etsu.edu/etsu-works/3227.

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Increasingly, researchers have successfully identified strategies to promote comprehension to students who are nonreaders. Further research is needed to replicate these promising results. In the current study, we used a multiple probe across participants design to evaluate the effectiveness of an iPad app, which incorporates evidence-based practices such as constant time delay and system of least prompts, on the acquisition of targeted vocabulary and comprehension of four middle school students with significant intellectual and developmental disability (SIDD). Findings suggest that the intervention resulted in improved performance across all participants and that some generalization and maintenance of skills was seen. Limitations and implications for practice and future research are discussed.

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Lawson, Michael David. "Children of a One-Eyed God: Impairment in the Myth and Memory of Medieval Scandinavia." Digital Commons @ East Tennessee State University, 2019. https://dc.etsu.edu/etd/3538.

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Using the lives of impaired individuals catalogued in the Íslendingasögur as a narrative framework, this study examines medieval Scandinavian social views regarding impairment from the ninth to the thirteenth century. Beginning with the myths and legends of the eddic poetry and prose of Iceland, it investigates impairment in Norse pre-Christian belief; demonstrating how myth and memory informed medieval conceptualizations of the body. This thesis counters scholarly assumptions that the impaired were universally marginalized across medieval Europe. It argues that bodily difference, in the Norse world, was only viewed as a limitation when it prevented an individual from fulfilling roles that contributed to their community. As Christianity’s influence spread and northern European powers became more focused on state-building aims, Scandinavian societies also slowly began to transform. Less importance was placed on the community in favor of the individual and policies regarding bodily difference likewise changed; becoming less inclusive toward the impaired.

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Stedt, Astrid. "Undervisning i skymundan : En forskningsöversikt över samhällskunskapsundervisningen inom särskoleverksamheten." Thesis, Jönköping University, HLK, Ämnesforskning, 2021. http://urn.kb.se/resolve?urn=urn:nbn:se:hj:diva-52198.

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Särskolan skrevs in i skollagen 1985 och har sedan dess varit en skolform för elever med intellektuella funktionsnedsättningar som inte anses kunna följa den ordinarie undervisningen. Sedan särskolans införande har verksamheten utvecklats till att närma sig den ordinarie skolverksamheten. Syftet med forskningsöversikten är att undersöka hur tidigare forskning beskriver hur samhällskunskapsämnet kommer till uttryck inom särskolan, samt vilka utmaningar lärare inom särskolan ställs inför i det kunskapsutvecklande arbetet. Nationella och internationella vetenskapliga publikationer som behandlar särskoleverksamheten och dess undervisning och utmaningarna med denna har valts ut och analyserats. I studiens resultat framkommer att samhällskunskapsämnet inte har någon egen särställning, utan genomsyrar hela undervisningen inom särskolan. Svårigheter som kan uppstå för lärare inom särskolan är att de saknar redskap för- och kunskap om att tillämpa styrdokumenten i praktiken. Vidare klargörs att lärare anser sig sakna viktig kunskap om och behövliga redskap för att tillämpa den likvärdiga bedömning och betygsättning som förväntas av dem. Resultatet visar också på en oenighet om vilket fokus och uppdrag särskoleverksamheten har och bör ha. Sammanfattningsvis har elevernas kunskapsutveckling fått högre prioritet och är ett kontinuerligt samtalsämne inom särskoleverksamheten. Dock redovisas och diskuteras också en oenighet om i vilken utsträckning kunskaps- eller omsorg och forstansperspektivet ska vara mest framträdande inom verksamheten. Samt frågan om samhällskunskapsämnet bör vara ett tydligt eget ämne eller om det bör genomsyra hela undervisningen inom särskolan.

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Schmitt, Pierre. "Signes d'ouverture : contributions à une anthropologie des pratiques artistiques en langue des signes." Thesis, Paris, EHESS, 2020. http://www.theses.fr/2020EHES0166.

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Ces contributions à une anthropologie des pratiques artistiques en langue des signes s'articulent autour d'une réflexion associant processus de création, œuvres et publics. L'étude des mises en scènes de la langue des signes, au théâtre, au cinéma, à la télévision, ou en ligne, nécessite la construction d'un modèle sémiotique qui ne sépare pas les locuteurs et les langues en amont de l'analyse. Je fournis ainsi un certain nombre de repères concernant les études linguistiques sur les langues des signes et les "gesture studies" afin d'éclairer les renouvellements épistémologiques et méthodologiques dans l'étude de communication humaine. De la langue à la culture, je reviens également sur l'étude des sourds comme groupe culturel et linguistique par les "Deaf studies" dans la mesure où si de nombreux travaux qui en relèvent sont connus en France, rares sont les publications qui interrogent ce champ en tant que tel. L'exposé de leurs relations avec les "disability studies" et de certains positionnements vis-à-vis de la catégorie du « handicap » constituent une autre contribution nécessaire afin de mieux comprendre les cadres contemporains au sein desquels les pratiques artistiques en langue des signes se développent et se diffusent. Les textes théoriques contribuant à une institutionnalisation des pratiques artistiques en langue des signes sont aussi très rares. C'est pourquoi je me suis livré à l'exégèse des « nouvelles directions et définitions » proposées par Dorothy Miles et Louie Fant en 1976, dans le contexte américain de professionnalisation du « théâtre sourd » au sein du National Theatre of the Deaf. Je présente ensuite ce dernier et l'évolution de ses créations afin de rendre compte de son influence sur les débuts de l'International Visual Theatre en France. Et si c'est par le théâtre que les pratiques artistiques en langue des signes ont été professionnalisées et sont entrées dans l'espace public, la popularité actuelle du « chansigne » m'a conduit à m'interroger sur l'identité de ses praticien-ne-s et la diversité de ses formes. L'étude des créations audiovisuelles qui y sont liées offrait une étude de cas pour appliquer une analyse multimodale tenant compte des langues mises en scène, de l'identité et des compétences des artistes, des intentions artistiques et des publics visés. Enfin, au sein d'un monde de l'art signant, l'étude de festivals comme contexte de réception m'a permis de documenter la manière dont l'évolution des inter-actions entre sourds et entendants par le partage de la langue des signes contribuent à l'émergence d'une « communauté signante »
These contributions to an anthropology of artistic practices in sign language associate thoughts on creative processes, works of art and audiences. Studying sign language "mises en scènes", in theater, in movies, on television, or online, requires a semiotic model that does not separate speakers and languages before undertaking analysis. I thus provide some insight on gesture studies and linguistic studies on signs in order to shed light on current epistemological and methodological issues in the study of human communication. From language to culture, I will also address the description of deaf people as a cultural and linguistic group by Deaf studies. Deaf studies are known in France but French works interrogating their very existence as a field are rare. Presenting the relationship between Deaf studies and disability studies will be another necessary step toward understanding the contemporary frameworks within which artistic practices in sign language are developing and spreading. Theoretical texts contributing to the institutionalization of artistic practices in sign language are also rare. This is why I dedicated myself to a thorough investigation of the "new directions and definitions" suggested by Dorothy Miles and Louie Fant in 1976, in the context of professionalization of "deaf theater" within the National Theater of the Deaf. I then present the NTD and the evolution of its creations to highlight its influence on the beginnings of the International Visual Theater in France.While artistic practices in sign language have been professionalized and entered public space through theatre, current popularity of "singing in sign language" has led me to question its practitioners' identities and the diversity of its forms. The study of sign language music videos has offered a case study to apply a multimodal analysis, taking into account staged languages, artists' identities and skills, artistic intentions and targeted audiences. Finally, within a signing art world, the study of festivals as reception context allowed me to document how evolutions of deaf/hearing interactions through the sharing of sign language contribute to the emergence of a "signing community"

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Stedt, Astrid. "Utmaningar i särskolan : En intervjustudie med speciallärare kring deras upplevelse av samhällskunskapsämnet i särskoleverksamheten." Thesis, Jönköping University, HLK, Ämnesforskning, 2021. http://urn.kb.se/resolve?urn=urn:nbn:se:hj:diva-53850.

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Beteckningen särskola etablerades 1955 och har sedan 1985 varit inskriven i Skollagen. Särskoleverksamheten är en skolform vid sidan av den ordinarie skolverksamheten och är avsedd för elever med intellektuella funktionsnedsättningar som inte bedöms klara av att följa den ordinarie undervisningen. Undervisningen i särskoleverksamheten ska i största mån motsvara den som bedrivs inom den ordinarie skolverksamheten. Denna studies syfte är att undersöka verksamma speciallärares subjektiva upplevelser av olika delar av arbetet inom särskolan. Syftet är vidare att besvara de frågeställningar som ligger till grund för arbetet, som berör hur lärare i sitt arbete förhåller sig till styrdokumenten, hur de arbetar kunskapsutvecklande samt hur samhällskunskapsämnet kommer till uttryck inom verksamheten. Studien antar en teoretisk utgångspunkt ur fenomenologisk teori då den undersöker verksamma speciallärares subjektiva upplevelser av olika situationer relaterat till lärande inom särskolan. Metoden som antas för att genomföra undersökningen är en kvalitativ intervjustudie med en induktiv metodansats. Det som framkommer ur intervjuerna är en gemensam positiv inställning till rådande styrdokument och dess kunskapsfokusering. Respondenterna har även uppfattningen att samhällskunskapen är väldigt viktig för eleverna att få möta men att kan vara problematiskt på grund av abstrakt innehåll som ska brytas ner till en lämplig nivå. Vidare framkommer en generell uppfattning att lärarna i stor utsträckning använder styrdokumenten som förankring för sin undervisning. Även detta upplevs stundvis som problematiskt då styrdokumenten och dess bedömningskriterier upplevs diffusa. Det kunskapsutvecklande arbetet upplevs som en stor utmaning, men likväl en viktig del av arbetet. Utmaningar ligger i att motivera enskilda elever, hitta en nivå i undervisningen som är lämplig för eleverna, formulera uppnåbara, bedömningsbara och tidsbegränsade mål. Det är vidare viktigt att få med sig eleverna i utvecklingen genom ständigt kommunikation i form av formativ bedömning, återkoppling och positiv förstärkning vid framsteg i utvecklingen.
The term Special school [särskola] was established in 1955 in Sweden and has been registered in the Education Act since 1985. The special school is a form of education in addition to the regular schools and is intended for students with intellectual disabilities who are not considered to be able to follow the regular teaching. The teaching in the special school shall to the greatest extent correspond to that which is conducted within the regular school. The purpose of this study is to research active special teachers' subjective perceptions and experiences in different parts of their work within the special school. The purpose is also to answer the questions that form the basis of this study, which covers how teachers in their teaching relate to the curriculum, how they work to encourage the students’ knowledge development and how the Social Studies subject [samhällskunskap] is expressed within the special school. The study assumes a theoretical starting point from phenomenological theory as it examines active special teachers' subjective experiences and perceptions of different situations related to learning within the special school. The method adopted for conducting the survey is a qualitative interview study with an inductive methodical approach. What emerges from the interviews is a shared positive attitude towards the prevailing curriculum and its focus on knowledge. The respondents also have the opinion that the social studies subject is very important for the students but that it can be problematic due to abstract content that must be broken down to an appropriate level. Furthermore, there is a general perception that teachers to a large extent use the curriculum as an anchor for their teaching. This is also sometimes perceived as problematic as the curriculum and its evaluation criteria are perceived as diffuse. The knowledge development work is perceived as a great challenge, but still an important part of the work. Challenges lie in motivating individual students, finding a balance in the teaching that is suitable for all students and formulating achievable, assessable and time-limited goals. The teachers also emphasize that it is also important to involve the students in the development through constant communication in the form of formative assessment, feedback and positive reinforcement in the process of their development.

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Morrison, Lianna. "The high school experience of a learner with Down syndrome: a case study." Thesis, Stellenbosch : University of Stellenbosch, 2008. http://hdl.handle.net/10019.1/1705.

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Thesis (MEdPsych (Educational Psychology))--University of Stellenbosch, 2008.
The inclusion policy which is currently being implemented according to White Paper 6 (July 2001) has raised many questions and debates. In South Africa at the moment there is a focus on the implementation of inclusion policies in primary schools. Although many studies have been conducted on Down syndrome, there seems to have been little focus on the adolescent. Specifically their experiences in the high school context appear to have received little attention. This paper focused on the experiences of an adolescent with Down syndrome who has been mainstreamed into a high school. The experiences are discussed within identified indicators of quality of life namely; peer relationships, experiences of academic, general school and extra-mural activities. In addition the effects of Down syndrome on areas such as adolescence, inclusion strategies, behaviour and social skills are also investigated. The findings of this paper were that of adolescents with Down syndrome can be successfully mainstreamed if their individual needs are catered for. These needs include opportunities to spend time with learners with the same abilities as their own. Satisfaction was experienced by the participant and her parents regarding her academic placement and scholastic achievements. A factor that played a role in her successful placement was the supportive environment she was in. Although satisfaction was experienced with regards to the process of inclusion there were parental concerns regarding her future independence.

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Orlando, Rebekah. "Gimp Anthropology: Non-Apparent Disabilities and Navigating the Social." Thesis, 2012. http://hdl.handle.net/1911/64712.

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Individuals with non-apparent, physical disabilities face unique social challenges from those that are encountered by the more visibly disabled. The absence of visible cues indicating physical impairment causes ambiguity in social situations, leaving the sufferer vulnerable to moral judgments and social sanctions when they are unable to embody and perform to cultural norms. This dynamic generates a closeted status that the individual must learn to navigate. Using Eve Sedgwick's "The Epistemology of the Closet," this paper deploys auto-ethnography, traditional ethnographic techniques, and literature reviews to illuminate a third space of functioning between the outwardly 'healthy' and the visibly disabled.

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Schwartz, Karen Debra. "Understanding conceptualizations of students with "significant intellectual disabilities": an analysis using discourse theory." 2011. http://hdl.handle.net/1993/4415.

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Notwithstanding the prominent focus on inclusion in the discourse of special education, students with significant intellectual disabilities in North America continue to receive a part of their education in segregated contexts (G. L. Porter, 2008; Schwartz, Mactavish & Lutfiyya, 2006; P. Smith, 2010). This situation creates an interesting and perplexing anomaly that I attempt to reconcile through an examination of the discursive conceptualizations of these students in Canadian introductory special education textbooks. My study is framed within (a) the academic field of disability studies, which re-imagines disability using new perspectives (Linton, 1998; Oliver, 1996), and (b) new philosophical concepts of “personhood”, which critique traditional definitions of personhood based on intellectual ability (Carlson, 2010; Carlson & Kittay, 2009; Nussbaum, 2006). Situated within social constructionism and discourse theory (Laclau & Mouffe, 2001), this analysis examines how students with significant intellectual disabilities are depicted in these textbooks. The language used in portraying these students suggests a discourse of individual pathology, medicalization and professionalization, distancing students with significant intellectual disabilities from other students because of their perceived lack of abilities, needs and behaviours. This discourse relies heavily on traditional understandings of people with significant intellectual disabilities as lacking in value. There is little discursive evidence to suggest that these students are presented in ways that challenge either historical or modern conceptualizations.

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Gallinger, Katherine R. "INCLUSIVE POST-SECONDARY EDUCATION: STORIES OF SEVEN STUDENTS WITH INTELLECTUAL DISABILITIES ATTENDING COLLEGE IN ONTARIO, CANADA." Thesis, 2013. http://hdl.handle.net/1974/8255.

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Post-secondary education is an aspiration for many students; however, students with intellectual disabilities are provided few opportunities to pursue this dream. Current practices in the Ontario system of education frequently segregate and exclude students with intellectual disabilities from participation in the educational opportunities that are provided to non-disabled students. These educational practices ultimately limit opportunities for students with intellectual disabilities, and as such, fail to provide sufficient credentials to these students so they can participate in post-secondary education or employment. In recent years, alternative routes through post-secondary education across Canada, and in Ontario, have been emerging for students with intellectual disabilities. Yet, these opportunities are not enshrined in government policies or post-secondary practice, and are only provided at the discretion of a handful of post-secondary institutions across Ontario. The purpose of this study is to provide an understanding of the inclusive post-secondary education experience from the perspectives of students who were participating in inclusive college programs in Ontario. Seven participants were recruited from two colleges in Ontario that provide an inclusive post-secondary experience for students with intellectual disabilities. Through a disability studies framework, a qualitative phenomenological methodology was employed in this study to empower the participants to share their stories and hear their voices. Three in-depth individual interviews using photo-elicitation were used to invite participants to offer a rich, detailed, first-person account of their experiences in inclusive post-secondary education. Each participant’s unique story of their college experience is highlighted as a Student Portrait. The main themes that emerged from the participants combined experiences were academic growth and development, interpersonal relationships and social networks, career development and employment potential, and self-determination. Findings from this study provide evidence of the positive outcomes of participation in post-secondary education for students with intellectual disabilities, including an anticipated positive impact that would extend well into the futures of each participant. This study highlights the need for post-secondary education reform to increase such opportunities for students with intellectual disabilities.
Thesis (Ph.D, Education) -- Queen's University, 2013-09-06 10:23:21.317

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Fullston, Tod. "The role of Aristaless related homeobox (ARX) gene mutations in intellectual disability." Thesis, 2012. http://hdl.handle.net/2440/73327.

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Intellectual disability (ID) affects ~1-3% of the population, profoundly impacting the lives of affected individuals and their families. An approximate 30% excess of males with ID implicates X-chromosome genes. The most common inherited form of ID is fragile-X syndrome, affecting ~1/5,000 live male births. Another X-linked gene, the aristaless related homeobox (ARX) gene, is also frequently mutated causing X-linked ID (XLID). At least 50 pathogenic mutations spanning the ARX open reading frame (ORF) have been reported in 110 families. These mutations cause at least 10 clinically distinct pathologies, all of which include ID. These clinical entities range in severity from X-linked lissencephaly with ambiguous genitalia (XLAG) to mild ID with no other consistent clinical features. Of the known ARX mutations 60% occur in the section of the ORF that encodes for the first two tracts of uninterrupted alanine, ie polyalanine (pA) tracts. This is likely due to the extraordinarily high GC content of these regions of the gene (>97%). Two recurrent mutations (c.304ins(GCG)₇ – pA1 and c.429_452dup – pA2) arise from expansion of their respective pA tracts. The c.429_452dup mutation alone accounts for ~40% of all reported ARX mutations. To assess the frequency of ARX mutations among the intellectually disabled, genomic DNA from 613 individuals were screened for the most frequent ARX mutations. Of these, 500/613 samples were screened for mutations in the entire ARX ORF by either SSCP, dHPLC or direct Sanger sequencing. A subset of 94/500 patients were also screened for sequence variations in ultraconserved (uc) elements flanking the ARX gene, which likely act as ARX enhancers. Subsequently, using transient transfection studies we assessed the subcellular localisation of selected mutations and wildtype ARX proteins. Six different ARX mutations were detected in eight individuals (8/613; 1.3%) and potentially pathogenic sequence variations were found in uc elements in three more individuals. A total of five duplication mutations were discovered in pA2, two larger than the recurrent c.429_452dup, confirming exon 2 of ARX as a mutation ‘hot spot’. Increased aggregation was observed as a function of pA1 and pA2 length, aligning with the patient’s phenotypic severity. Three missense mutations were detected. A familial c.81G>C mutation caused a premature termination codon in exon 1, leading to Ohtahara syndrome (OS) and West syndrome (WS) in two male cousins. Although the c.81G>C mutation should truncate the ARX protein, reinitiation of translation at a down-stream methionine codon (c.121_123) likely occurs, ‘rescuing’ these patients from the otherwise severe XLAG phenotype. Two point mutations (c.1074G>T/p.R358S; c.1136G>T/ p.R379L) that alter key residues within the homeodomain were found in two individuals with brain/genital malformations and led to increased ARX protein mislocalisation. These mutations impair vital properties of ARX’s transcription factor function by perturbing its localisation into the nucleus (p.R379L) or DNA binding (p.R358S). This study confirms that ARX mutations contribute significantly to XLID and that the majority of mutations occur within exon 2, specifically within the region of pA2. Moreover, there is a correlation between the subcellular localization of the mutant protein and the clinical severity in the patients.
Thesis (Ph.D.) -- University of Adelaide, School of Paediatrics and Reproductive Health, 2012

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Gerlin, Gerpha. "Autoethnographic reflections on subjectivity and chronic mental illness." Thesis, 2019. https://hdl.handle.net/2144/36525.

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This project emerges from engaging and studying the lives, including mine, of the many who go—and stay—crazy. Here, I explore the kinds of existences that those impaired by severe and persistent mental illness(es), what I refer to henceforth as “chronic mental illness”— have had (or been able) to forge and leverage, as well as some of the resources and structures they have developed/manipulated in order to do so. This thesis explores one way in which chronically mentally ill people exact agency over their own embattled personhood. The term “personhood” draws from existential traditions in philosophy and theology (Strawson 1959; Taylor 1989, 127-142; Rosfort 2018), though I understand and use it here as it is relevant to phenomenological psychopathology. By “personhood”, I mean the normative traits of a society wherein individuals are recognized by seemingly “common” traits of humanity. While there is not, as philosopher Robert Spaemann contends, “a [single] characteristic that can be called ‘being a person’” (Spaemann 1996, 14), to understand human beings (being) is to also grapple with the ethical demands of intentionality, autonomy, experience, and subjectivity. By “subjectivity”, I refer to the innumerable and descriptive components that comprise individual, relational, and intersubjective experience(s). These components, and how they are known and described, emerges from a self-awareness in maneuvering the world and, consequently, developing a particular lifeworld. My interests in personhood and subjectivity emerge from the assumption that “the fragility of human identity is rooted in the various ways in which our biology challenges our experience of being an autonomous self” (Ricoeur 1966; Ricoeur 1970, 472; Rosfort 2018, 5). Part of what complicates personal identity is the impossibility of grounding personhood in either biological otherness or an intrinsic, pre-reflective selfhood. Being a person is “the task of becoming […] concrete […] through the constant encounter with the otherness that is an inescapable part of one’s identity” (Rosfort 2018, 6). Seeing a person, Ricoeur believes, requires the perpetual examination of experiential tensions among identity traits that go beyond biological reductionism and constancy. Illness narratives are useful tools for understanding the extent to which disability incites a fundamental interrogation of the self, as well as a reckoning of practices of self-recognition and phenomenological metamorphosis. This multi-field site investigation engages self-identifying psychiatrically disabled people via participant-observation at three peer support networks within the greater Boston area. Data, by way of stories recounted and collected, is framed by my own lived experience participating in similar structures, both in-person and online. Stories from both occasions, including interview data and media analysis, are relayed as means of triangulation. This project relies on sociologist Noman Denzin’s concept of “cumulative epiphanies” (Denzin 1989), or, moments wherein ill authors/speakers recognize the extent to which their personhood was honed through the medium of the illness itself (Frank 1993, 46). In large part, this project explores ways that people experiencing disabling effects of mental illness learn to take care of themselves. It pays particular attention to how the personal views of people with such illnesses shape the construction and layout of varied peer support networks. Although it considers general psychiatric practice involving prescribing clinicians (e.g., physician or nurse practitioner) and non-prescribing clinicians (e.g., talk therapists), the central objective is to consider the emergence of mutual support, or “self-help” models, as a mode of constructing a new sense of self/advocating for unmet needs within traditional medical practice. More broadly, this project maps the reflexive transformation(s) of person into patient and the varied methods of healing and treatment that the chronically mentally ill utilize in such contexts. It considers the emergence of PSNs as a counter/cultural borderland (Kleinman 1980; Garcia 2016) between the social “psy”ences (Matza 2013; Raikhel & Bemme 2016) and psychiatry. As a theoretical fusion of history of psychiatry, sociology of mental health, and phenomenology, I trouble the parameters within which PSNs and their participants help craft, shape, and directing a particular kind of experience of mental illness, suffering, and/or convalescence.

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Serrano, Samantha Lynn. "Suelen callar : the institutional perceptions and treatments of the sexuality and sexual abuse of people with intellectual and psychological disabilities in Guatemala." Thesis, 2011. http://hdl.handle.net/2152/ETD-UT-2011-08-4313.

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The understandings and treatments of the sexual rights of people with intellectual and psychological disabilities vary in different societies. However, one issue that is common in most societies is that this group of people experiences the highest rates of sexual violence and is regularly a-sexualized. Much attention has been paid to the increasingly visible issues of sexual violence in Latin America in a gendered and racial context, however recent scholarship has neglected to look at sexual violence in the context of people with disabilities. In this text, I aim to uncover how the human rights, and more specifically, sexual rights, are understood and treated for this highly marginalized group of people in Guatemala, a country that has endured heavy amounts of violence and trauma both contemporarily and historically. Through ethnographic fieldwork conducted at institutions for disability services in urban Guatemala, I paint a picture of how the contemporary social and political climate involving violence, nearly complete impunity for crimes, culturally engrained patriarchal norms and neoliberal policies affect this group of people who are often depoliticized through patronizing portrayals in media and the public arena. Using in depth investigations of Guatemalan law and observational work and interviews conducted in public government-funded institutions, NGOs and non-profit organizations and human rights organizations, I seek to reveal the paradigms within the disparate types of institutions for understanding and treating people with disabilities. By questioning the institutional perceptions and treatments of the sexuality and sexual abuse of people with intellectual and psychological disabilities, I seek to examine the different ways cognitive disability has been socially constructed in Guatemala and the different reasons behind this group's social abandonment and high rates of sexual violence towards them. This work problematizes medical and charity models utilized for understanding disability that have been implemented through law, institutional and public policies, and societal misconceptions. This research also challenges Western disability policies and conceptions that have been imposed in developing countries like Guatemala, and questions the possibility to create spaces of local disability rights activism in spite of high risk factors for violence and neoliberal policies that limit political protest.
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Chen, Mei-Ru, and 陳玫如. "Studies on the Leisure Needs, Leisure Participation and Leisure Constraints of the Family-Caregivers for Intellectual Disability Students." Thesis, 2016. http://ndltd.ncl.edu.tw/handle/76282931406558120099.

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碩士
大葉大學
觀光餐旅碩士在職學位學程
104
The purpose for this research is aimed to discuss association and difference of family-caregivers of intellectual disability students between leisure needs, leisure participation and leisure constraints. This research included 315 participants and we classified these data through t test, one-way anylysis of variance, Scheffé's method and Pearson's correlation analysis. Several conclusions were made as follows: Mental needs is most important for family-caregivers of intellectual disability students and accomplishment needs is least important. Family-caregivers of intellectual disability students tended to choose entertainment or social activities, instend of sporty or hobby activities. Family-caregivers of intellectual disability students were most likely to suffer from constitutive constraints and not disturbed by interpersonal relations. Gender and frequency of leisure both played important roles in the leisure needs of family-caregivers of intellectual disability students. Relationship, age, education, marriage, monthly income and frequency of leisure had great impacts in leisure participation of family-caregivers of intellectual disability students. Education, monthly income and frequency of leisure played important roles in leisure constraints for family-caregivers of intellectual disability students. Leisure needs of family-caregivers for intellectual disability students has lower positive correlation with leisure participation. Leisure needs of family-caregivers for intellectual disability students has no specific correlation with leisure constraints. Leisure participation of family-caregivers for intellectual disability students has lower negative correlation with leisure constraints.

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Dissertations / Theses on the topic 'Intellectual disability;disability studies;anthropology'

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