Browsing by Author "Capri, Charlotte"
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- ItemIntellectual disability rights and inclusive citizenship in South Africa : what can a scoping review tell us?(AOSIS, 2018) Capri, Charlotte; Abrahams, Lameze; McKenzie, Judith; Coetzee, Ockert; Mkabile, Siyabulela; Saptouw, Emanuel; Hooper, Andrew; Smith, Peter; Adnams, Collen; Swartz, LeslieBackground: Intellectual disability (ID) is the most prevalent disability in the world. People with intellectual disability (PWID) frequently experience extreme violations of numerous human rights. Despite greater prevalence in South Africa than in high-income countries, most ID research currently comes from the Global North. This leaves us with few contextually sensitive studies to draw from to advance inclusive citizenship. Objectives: Our scoping review aims to investigate pertinent ID rights issues in South Africa, synthesise quantitative and qualitative studies, and provide a synopsis of available evidence on which to base future work. We aim to clarify key concepts, address gaps in the literature and identify opportunities for further research. Method: We followed strict eligibility criteria. Medical subject heading terms were entered into seven databases. Seven reviewers worked independently, two per paper. Quantitative and qualitative data extraction forms were designed. We followed Preferred Reporting Items for Systematic Review and Meta-Analysis (PRISMA) guidelines and registered a protocol. An inductive approach enabled a thematic analysis of selected studies. Results: By following PRISMA guidelines, 82 studies were assessed for eligibility of which 59 were included. Ten sub-themes were integrated into four main themes: the right not to be discriminated against, the right to psychological and bodily integrity, the right to accommodating services and challenges to rights implementation. Conclusion: People with intellectual disability face compound difficulties when trying to assert their constitutionally entitled rights. This ongoing project requires serious commitment and action. Statutory obligations to nurture every South African’s human rights naturally extend to PWID and their supporters who forge ahead in a disabling environment.
- ItemOn the unethicality of disablism : excluding intellectually impaired individuals from participating in research can be unethical(AOSIS Publishing, 2012-09) Capri, Charlotte; Coetzee, OckertIntroduction: As coconstructors of studies that may affect them directly, adults living with intellectual impairment need not be excluded as coresearchers. Assuming that these adults do not have capacity to consent as participants in research due to impaired cognitive functioning presumes incapacity (Dye, Hendy, Hare, & Burton 2004). Exclusion on the basis of impairment could be seen as discriminating and a contravention of a non-derogable human right (Constitution of the Republic of South Africa [RSA], No. 108 of 1996). This could also be construed as unethical since such omissions may hinder rather than enable developments to improve health and services for intellectually impaired persons. As does any South African, intellectually impaired citizens have the right to benefit from scientific progress, and even more so if they can contribute as experts to such progress (London, Kagee, Moodley, & Swartz 2011). By virtue of their expertise on disability matters, their voice may stand in public and scientific service.
- ItemThe right to be Freepeople : relational voluntary-assisted-advocacy as a psychological and ethical resource for decolonizing intellectual disability(PsychOpen, 2018) Capri, Charlotte; Swartz, LeslieParticipating in social activism implies responsibility for its exchange and creation. We focus on Intellectual Disability (ID) as an advocacy site for individuals who are dependent on assistance with activities of daily life, and attend to the process of taking care during social justice projects. Our paper responds to current South African social justice controversies perpetrated against people who may be unable to independently mobilize against increasingly othering – even deadly – socio-political conditions. Underpinned by relational Ethics of Care, voluntary-assisted-advocacy can be a psychologically relational, intersubjective, and societal project that strives for ID citizenship-making and social justice. This paper draws on numerous interviews and a number of ethnographic observations in exploration of ID care. Empirical material was subjected to thematic content analysis, and participant quotes bring our argument to life. Relationships among people with Intellectual Disability (PWID) and non-ID assistant-advocates are asymmetrical. We can either uphold dominant non-ID voices, or transform socio-political ruling relations that maintain dependence on conditions of power and inequality. Our contributions to the advocacy we co-create today will shape the activism we will depend on in the future. We consider relational voluntary-assisted-advocacy as a psychological and ethical resource for sustainable, mutually satisfying social change
- ItemThinking about intellectual disability care : an intersubjective approach(Stellenbosch : Stellenbosch University, 2016-03) Capri, Charlotte; Swartz, Leslie; Stellenbosch University. Faculty of Arts and Social Sciences. Dept. of PsychologyENGLISH ABSTRACT : Of the many challenges facing persons with intellectual impairment in South Africa, disabling care continues to confront individuals who live and work with intellectual disability. Intellectual impairment care can be conceptualised as more than the performance of tasks involving giving and receiving, but can be understood as intersubjective and relational person-making exchanges that also unfold in broader socio-political spaces. Important voices have been marginalised in discourses on intellectual disability, and, in South Africa, traditional hegemonies of knowledge dominate thinking spaces that are yet to be taken up by the opinions of intellectually impaired individuals and care workers. Since experiences of care have been rarely voiced or validated by intellectually impaired individuals themselves, making and taking care should also refer to our capacity for reflection regarding our participation in many of its practices. This study opens up possibilities for fresh perspectives on psychiatric intellectual disability care by bringing together apparently disparate fields of relational psychoanalysis and intersubjectivity on the one hand, and contemporary models of disability on the other. The research collaboratively tracks the voices of its primary speakers, and touches on problematic aspects of care by foregrounding subjective experiences of living and working with psychiatric intellectual impairment, and by exploring the making of disabled and disabling care. It then becomes possible to see how dynamics of psychiatric intellectual disability care can both complicate and be addressed by a relational and intersubjective conceptualisation of ethical care. It was the task of the researcher, as scribe of this study, to facilitate conditions in which expert voices on intellectual disability care could be raised. In such intersubjective spaces the experience of impairment is no longer simply given or bestowed, but voiced by the real experts – those who live and work with intellectual impairment in a disabling world.
- ItemWhere there is no evidence : implementing family interventions from recommendations in the NICE guideline 11 on challenging behaviour in a South African health service for adults with intellectual disability(2019) Coetzee, Ockert; Swartz, Leslie; Capri, Charlotte; Adnams, ColleenBackground: Low- and middle-income countries often lack the fiscal, infrastructural and human resources to conduct evidence-based research; similar constraints may also hinder the application of good clinical practice guidelines based on research findings from high-income countries. While the context of health organizations is increasingly recognized as an important consideration when such guidelines are implemented, there is a paucity of studies that have considered local contexts of resource-scarcity against recommended clinical guidelines. Methods: This paper sets out to explore the implementation of the NICE Guideline 11 on family interventions when working with persons with intellectual disability and challenging behavior by a group of psychologists employed in a government health facility in Cape Town, South Africa. Results: In the absence of evidence-based South African research, we argue that aspects of the guidelines, in particular those that informed our ethos and conceptual thinking, could be applied by clinical psychologists in a meaningful manner notwithstanding the relative scarcity of resources. Conclusion: We have argued that where guidelines such as the NICE Guidelines do not apply contextually throughout, it remains important to retain the principles behind these guidelines in local contexts. Limitations of this study exist in that the data were drawn only from the clinical experience of authors. Some of the implications for future research in resource-constrained contexts such as ours are discussed. Smaller descriptive, qualitative studies are necessary to explore the contextual limitations and resource strengths that exist in low- and middle-income settings, and these studies should be more systematic than drawing only on the clinical experience of authors, as has been done in this study.