Over time, intellectual disability has been mythologised into folklore, religion and culture resulting in patterns of thought, communication, actions, customs, beliefs and values related to intellectual disability specific to particular societies (Smith, 2002 in Edwardraj, Mumtaj, Prasad, Kuruvilla & Jacob, 2010:736). However, data on the perceptions related to intellectual disabilities in the general population, and specifically in the more rural areas are sparse. The individual with an intellectual disability may have a significant influence on his family members, as he or she may demand specific requirements and obligations of the family members, depending on the severity of the intellectual disability (Moyson & Roeyers, 2012:88). According to Mandleco, Frost Olsen, Dyches and Marshall (2003:365), relatively limited research has explored the relationship between the parents' and non-disabled siblings' functioning when living with an individual with an intellectual disability. The adolescent is in need of healthy support within the family system to help him during his unique process of change. Within families with intellectual disabilities, healthy functioning may be influenced or challenged (Graff, Neely-Barnes & Smith, 2008:240). However, according to Begum and Blacher (2011:1581) research indicates that there seems to be inconsistent findings on the manner in which individuals with intellectual disabilities have an impact on their non-disabled siblings. Therefore, it was the goal of this study to explore the experiences of adolescents living with a sibling with a moderate to severe intellectual disability. The family-systems theory could provide an appropriate theoretical framework to work from in order to explore the experiences of adolescents living with a sibling with a moderate to severe intellectual disability, seeing that the reciprocal influences of different sub-systems was explored. In order to achieve this goal a qualitative research approach was adopted. Applied research was considered the most suitable as the research findings emanating from this study could be used to propose recommendations regarding new problems or strengths identified and potential services that could be of benefit to families with children/siblings with moderate to severe intellectual disabilities. Only the identified non-disabled adolescents participated in this study. Research was conducted in the Carletonville area, Gauteng Province. The intrinsic case study was employed as the research design. The researcher recruited 10 (n=10) participants through two non-probability sampling techniques, namely purposive sampling, followed by snowball sampling. Semi-structured, one-on-one interviews were conducted to gather rich information from the participants. A pilot study was conducted in order to pre-test the interview schedule's effectiveness. Creswell's process for thematic data analysis was used to extrapolate themes and sub-themes. The trustworthiness of the data interpretation was confirmed through reflexivity, peer debriefing and an audit trail. The outcome of the empirical study revealed that the participants were unfamiliar with the term intellectual disability and that they demonstrated a limited ability to define intellectual disability as a phenomenon. As a result, they had a lack of knowledge regarding their siblings' functioning, as well as necessary current and future support needed. It seemed as if the lower the socio-economic background of the participant, the less likely he was to have basic knowledge and insight into his sibling's condition and the implications thereof. It was concluded that the general public seems to have a lack of knowledge regarding intellectual disability as a phenomenon, as participants were of the opinion that the public acted in a discriminative manner towards their siblings and persons with intellectual disabilities. The experiences of adolescents living with a sibling with a moderate to severe intellectual disability was explored in terms of their emotions; their relationships with their sibling and with their parents; as well as the influence of living with their sibling in their lives. Amongst other findings, participants experienced that their siblings received more attention or preferential treatment from their parents. As a result, emotions of sadness and anger were experienced. Participants were concerned about their siblings' care and support. They experienced anxiety, stress and guilt regarding their siblings in terms of care and support; therefore their schoolwork was influenced negatively. The siblings with an intellectual disability influenced the participants' lives positively as their understanding of individuals with intellectual disabilities was enhanced. Lastly, participants were in favour of support and educational groups, professional counselling, as well as guidance in terms of coping mechanisms to support them and their families. The guidelines proposed for practitioners working with families with an individual with moderate to severe intellectual disabilities are the following: Educate parents and family members involved regarding intellectual disability as phenomenon in order to eliminate misconceptions, unrealistic expectations and family conflict; enhance parents' awareness of existing support services in their surrounding communities; implement community awareness projects in cooperation with the existing centres for people with intellectual disabilities in order to empower the community with adequate knowledge regarding intellectual disability. In order to reduce stigma and discrimination associated with intellectual disability, considering the need for support services identified through this research; practitioners should ensure the rendering of therapeutic services, as well as support and educational groups. In rendering these services practitioners can play a role in reinforcing such families' wellbeing, socio-emotional functioning and interpersonal relationships. / Mini Dissertation (MSW)--University of Pretoria, 2016. / Social Work and Criminology / MSW / Unrestricted

Indiana University-Purdue University Indianapolis (IUPUI) / For adults with intellectual disability life as an adult is more constrained, with fewer opportunities; the literature indicates that intellectual disability negatively impacts people across multiple life domains. Despite this adverse influence, it is largely unknown how those with intellectual disability describe their experiences with adulthood. The current study utilizes photo-elicitation interviewing methodology in an attempt to rectify this deficit. Photo-elicitation research methodology uses images, rather than text, to construct queries and prompt responses. This approach is generally undertaken in disability studies to accommodate participants’ verbal and cognitive challenges, to make abstract concepts concrete, to provide opportunity for meaningful participation, and to empower subjects within the research environment. In this study, photo-elicitation interviewing was employed with a sample of 11 young adults with intellectual disability to discover how adulthood might differ in comparison with typical peers. Participants shared their perceptions of adulthood and experiences related to family, learning/education; community/volunteering/spiritual or faith community/employment/vocation; housing/neighborhood; friends/supportive relationships/personal connections; hobbies/fun; personal health. Results replicate participants’ endorsement of the same broad criteria for adulthood attainment as typified by normative peers in the emerging adulthood literature: acceptance of responsibility for oneself; independent decision-making; financial independence. Salient emergent findings specific to the study population indicated that adulthood differs in comparison with typical peers in relation to (1), advocacy efforts to increase awareness and value of the disability experience; (2), the effect of the COVID-19 pandemic; (3), the need for continued access to support services. Access to services can only be achieved through increasing awareness of this need, recognizing the importance of this need, and prioritizing policy change to meet this need. Participants in this study have indicated that they are more than up to the task of increasing awareness through advocacy, yet it falls to social institutions such as education and government to recognize this need for ongoing support and to prioritize this need by implementing service provision policy change. / 2024-05-26

Thesis (M. A. (Clinical Psychology)) --University of Limpopo, 2019 / Students with albinism experience social and academic challenges in society. These challenges are mainly influenced by their disability. Studies indicate that because they look different from most people they are treated differently and socially excluded and marginalised. Albino individual’ are also murdered in South Africa which is motivated by myths, beliefs and misconceptions in traditional African societies. The Social Model of Disability (SMD) underpinned the study as it is used to explore social experiences in different life contexts. The study used a qualitative approach with an exploratory research design. Purposive sampling was used to select the 18 participants. Thematic Content Analysis (TCA) was used to analyse data collected from the three focus groups. The findings of the study revealed that the social experiences of students with albinism are be difficult. They experience discrimination and stigmatisation from their peers and are often called derogatory names. It was also found that students with albinism have academic challenges because of their impaired vision, lecturers’ negative attitudes and insensitivity towards them. It was also found that the lack adequate assistive devices. Social experiences and academic challenges lead to a self-reported negative impact for instance, depression for these students. Ultimately, more awareness initiatives about the condition are required at the institution in order to improve the experiences of students with albinism.

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Kommunikation är en förutsättning för kunskapsutveckling och delaktighet i samhället. Elever med funktionsnedsättning har ofta svårigheter att kommunicera. Syftet med studien är att beskriva hur den kvantitativa empiriska forskningen framställer resultat av kommunikativa strategier hos elever med funktionsnedsättning och vilka faktorer som påverkar dessa möjligheter. En systematisk sökning av EBSCOhost databaser har gjorts som identifierade 10 kvantitativa studier. Resultatet visar olika strategier för att utveckla kommunikationsfärdigheter hos individer med funktionsnedsättning. Tillgången till återkoppling för lärare och elever, användandet av kamratstödjare som kommunikationspartner, elevassistenter som modeller samt alternativ- och kompletterande kommunikation visade sig ge goda effekter och ökade kommunikationsfärdigheterna hos eleverna. Faktorer som påverkade kommunikationsmöjligheterna visade sig vara kamratstödjarnas och elevassistententernas utbildning, direkt- och visuell återkoppling samt implementerade av alternativ- och kompletterande kommunikation hos omgivningen.  Vi drar slutsatsen att det finns flertal olika strategier som fungerar bra och som ökar kommunikationsfärdigheterna hos elever med funktionsnedsättning, samt flertal faktorer påverkar elevens kommunikationsmöjligheter.

Background: People with intellectual disability are more likely than the general population to be prescribed psychotropic agents. The most common indications include treatment of a psychiatric disorder and management of behaviours that challenge. Aim: The study aimed to assess the prescribing patterns of psychotropic medication to outpatients with intellectual disability at a psychiatric hospital. Setting: Alexandra hospital outpatient clinic, Cape Town. Methods: This was a retrospective folder and prescription chart review. Folders of all new patients (103) seen between January 2018 and August 2019 were examined at two points, the initial appointment and again at six months. The information was examined against the World Psychiatric Association (WPA) and the National Institute for Health and Care Excellence (NICE) guidelines for prescribing in people with intellectual disability. Results: psychotropic medication was prescribed to 88% of patients. Antipsychotics accounted for more than 56% of the medication prescribed and was used mainly to manage behaviours that challenge. Clinicians at Alexandra hospital followed prescribing guidelines to some extent; however, more still needs to be done to ensure best practice and care. Conclusion: This review revealed a few shortcomings in meeting prescribing guidelines by clinicians at Alexandra hospital. Measures to address these shortcomings could be the inclusion of medication review schedules and standardised forms for clerking and monitoring of side effects in patient files, the use of behavioural strategies as the primary management of behaviours that challenge, and the performance of regular clinical practice audits.

Despite legal advancements recognizing the rights of individuals with disabilities, societal barriers are still arising from the medical model of disability. These obstacles have resulted in marginalizing and isolating practices, in turn leading to the underrepresentation of individuals with disabilities in the workforce and, by extension, in leadership positions. Grounded in the frameworks of critical pedagogy and critical disability studies, this autoethnographic study examines, using my personal experiences as contextual evidence, the determining factors underlying the struggle for equity and leadership, within the hegemonic society that people with disabilities must navigate. The study further explores the issue of empowerment and raised consciousness among people with disabilities, as afforded by blending the tenets of critical pedagogy with a critical social model of disability. Based on the autoethnographic analysis, the study proposes future research and makes recommendations for inclusion of individuals with disabilities, educators working with people with disabilities, and institutions committed to inclusiveness of leaders with disabilities.

The term ‘disability’ is laden with medical origins and medical meanings, which contribute to exclusion and oppression for persons labeled as ‘disabled’. Moreover, these processes are amplified by constructing disability as an individual burden or personal tragedy. Medicalizing disability keeps it a personal matter, a personal problem that needs to be treated, rather than addressing the social processes that actually restrict or constrict the disabled person’s life. Rehabilitation Science and my lived experience of disability and walking serve as contexts that assist me as I explore how my subjectivity as a disabled woman and clinician helps me understand the theoretical tensions of five key themes: independence, power, client-centred practice, ableism, and the social model of disability in relation to disability and rehabilitation. These themes offer me a way to analyze my experiences, and how I have come to access and engage with Disability Studies literature in order to deepen my understanding of the critiques on disability and rehabilitation. As an insider, my research explores three decades of personal narrative. Through critical reflexivity as part of autoethnography, I work to increase my own awareness and that of my readers on the tension and complexities with respect to disability and rehabilitation. / Dissertation / Doctor of Philosophy (PhD)

Service dogs are becoming an integral part of our society. Consequently, there is a need for research that explores how Canada should proceed with the development and implementation of appropriate laws and policies that will ensure the proper use and equal integration of service dogs. Before this can take place, the terminology used within the field must be clarified, as society continues to move toward a more expanded definition of service dog, and public access challenges continue to impact the lives of persons with disabilities. The goal of this autoethnographical research study was to determine what service dog handlers, particularly ‘owner-trainers,’ feel constitutes a ‘service dog’ in Canada. When researchers conduct investigations on topics related to the lives of persons with disabilities, their research typically takes the form of disabled individuals being studied and not being directly involved within the research. Therefore, this project sought to directly involve persons with disabilities, while also attempting to avoid the possibility of censorship or silence. Through the use of statements from social media, this project captured the lived experiences without worrying about participants changing them to fit within society’s expectations. Society is not structured to be accessible for all, so when ‘accommodations’ are made, it is ‘expected’ that persons with disabilities will show gratitude and not voice their true feelings. Through the use of autoethnography, I shared my experiences, as a service dog raiser, trainer and handler, and provided a glimpse into the lives of other service dog handlers as they participate within their communities. In doing this, I hope the findings of my project will offer an important perspective to the discussion surrounding what constitutes a ‘service dog’ in Canada. / Thesis / Master of Arts (MA)

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