On the unethicality of disablism : excluding intellectually impaired individuals from participating in research can be unethical

CITATION: Capri, C. & Coetzee, C. On the unethicality of disablism : excluding intellectually impaired individuals from participating in research can be unethical. African Journal of Disability, 1(1): 1-4, doi: 10.4102/ajod.v1i1.23.The original publication is available at: http://www.ajod.orgIntroduction: 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.http://www.ajod.org/index.php/ajod/article/view/23Publisher's versio

Where 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

Background 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

Thinking about intellectual disability care : an intersubjective approach

Thesis (PhD)--Stellenbosch University, 2016ENGLISH 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.AFRIKAANSE OPSOMMING : Te midde van vele uitdagings wat mense met intellektuele gestremdheid in Suid-Afrika in die gesig staar, word individue wat leef en werk met intellektuele gestremdheid voortdurend met bestremmende sorg gekonfronteer. Intellektuele gestremdheidsorg kan gekonseptualiseer word as meer as die blote uitvoering van take wat die gee en neem van sorg behels, maar kan verstaan word as intersubjektiewe en relasionele persoon-skeppende uitruilings wat ook in breër sosio-politieke ruimtes ontvou. Belangrike stemme word gemarginaliseer in intellektuele gestremdheid diskoerse, en, in Suid-Afrika, word dink-ruimtes wat ingeneem moet word deur die menings van intellektueel gestremde individue en sorgwerkers steeds deur tradisionele kennishegemonieë oorheers. Sedert ervaringe van sorg selde uitgespreek of bekragtig word deur intellektueel gestremde individue hulself, hoort sorgskepping en sorgneming ook te verwys na ons kapasiteit vir besinning rakende ons aandeel in menige sorgpraktyke. Hierdie studie stel moontlikhede voor vir vars perspektiewe insake psigiatriese intellektuele gestremdheidsorg deur klaarblyklik uiteenlopende velde van relasionele intersubjektiwiteit aan die een kant, en kontemporêre modelle van gestremdheid aan die ander, te vereenselwig. Deur gesamentlik die stemme van primêre sprekers na te spoor en problematiese aspekte van sorg aan te spreek, bring hierdie navorsing subjektiewe ervaringe van leef en werk met psigiatriese intellektuele gestremdheid tot die voorgrond terwyl die skep van bestremmende sorg verken word. Dit word dan moontlik om te sien hoe die dinamiek van psigiatriese intelektuele gestremdheidsorg ‘n relasionele en intersubjektiewe konseptualisering van etiese sorg kan kompliseer, maar ook kan aanspreek. Dit was die taak van die navorser, as skrywer van die studie, om omstandighede te fasiliteer waarin deskundige intellektuele gestremdheidsorg stemme gelig kon word. In sulke intersubjektiewe ruimtes word die ervaring van gestremdheid nie meer eenvouding gegee of gegun nie, maar deur die werklike kenners uitgespreek – deur diegene wat met intellektuele gestremdheid leef en werk in ‘n bestremmende wêreld

The Right to Be Freepeople: Relational Voluntary-Assisted-Advocacy as a Psychological and Ethical Resource for Decolonizing Intellectual Disability

Participating 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

The right to be Freepeople : relational voluntary-assisted-advocacy as a psychological and ethical resource for decolonizing intellectual disability

CITATION: Capri, C. & Swartz, L. 2018. The right to be Freepeople : relational voluntary-assisted-advocacy as a psychological and ethical resource for decolonizing intellectual disability. Journal of Social and Political Psychology, 6(2):556–574, doi:10.5964/jspp.v6i2.946.The original publication is available at https://jspp.psychopen.euParticipating 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 changehttps://jspp.psychopen.eu/index.php/jspp/article/view/5085Publisher's versio

Child sexual abuse workers emotional experiences of working therapeutically in the Western Cape, South Africa

Please cite as follows:Capri, C., Kruger, L-M. & Tomlinson, M. 2013. Child Sexual Abuse Workers’ Emotional Experiences of Working Therapeutically in the Western Cape, South Africa. Child and Adolescent Social Work Journal , 30(5):365-382, doi:10.1007/s10560-012-0295-8.The original publication is available at http://link.springer.com/article/10.1007/s10560-012-0295-8South African child sexual abuse workers active in low-income communities bear witness to stories of sexual and physical abuse, neglect, pervasive deprivation, and violence. North American, British, and European workers’ emotional experiences have been captured in the literature, and a gap remains to be filled by those of their South African colleagues. This research aims to focus on the emotional experiences of social workers who engage therapeutically with sexually abused children in the Helderberg basin of the Western Cape, and resonate in some way with readers working in situations of poverty and trauma in other parts of the world. This study employed an explorative inductive research method, and followed a critical realist and contextual constructionist approach. Multiple-case study data collection took place by means of semi-structured interviews with social workers who engage therapeutically with sexually abused children. Data were examined by means of thematic analysis, and psychoanalytic theory was employed to analyse defences that surfaced during interviews. There were similarities in emotional experiences between South African participants and their abovementioned counterparts. The research also identified salient features of working with child sexual abuse in South Africa. The emotional experiences of doing such work, coupled with participants’ ways of managing sexually abused children’s material, gave rise to possible vicarious traumatisation symptoms and allowed for a psychoanalytic understanding to be put forward. The research also reports on useful measures that might enable individuals to continue interventions. To enable ongoing effective therapeutic engagement, social workers should have access to opportunities for acknowledging countertransferences and processing dynamic material defended against. The research contributes to knowledge of working in South Africa by exploring the emotional experiences of those who help sexually abused children daily, and by investigating the psychological impact prolonged therapeutic engagement has on workers active in Western Cape low-income communities

Intellectual disability rights and inclusive citizenship in South Africa: What can a scoping review tell us?

Background: 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

Dermatological manifestations in cardiofaciocutaneous syndrome: a prospective multicentric study of 45 mutation‐positive patients

International audienceBACKGROUND:Data on dermatological manifestations of cardiofaciocutaneous syndrome (CFCS) remain heterogeneous and almost without expert dermatological classification.OBJECTIVES:To describe the dermatological manifestations of CFCS; to compare them with the literature findings; to assess those discriminating CFCS from other RASopathies, including Noonan syndrome (NS) and Costello syndrome (CS); and to test for dermatological phenotype-genotype correlations.METHODS:We performed a 4-year, large, prospective, multicentric, collaborative dermatological and genetic study.RESULTS:Forty-five patients were enrolled. Hair abnormalities were ubiquitous, including scarcity or absence of eyebrows and wavy or curly hair in 73% and 69% of patients, respectively. Keratosis pilaris (KP), ulerythema ophryogenes (UO), palmoplantar hyperkeratosis (PPHK) and multiple melanocytic naevi (MMN; over 50 naevi) were noted in 82%, 44%, 27% and 29% of patients, respectively. Scarcity or absence of eyebrows, association of UO and PPHK, diffuse KP and MMN best differentiated CFCS from NS and CS. Oral acitretin may be highly beneficial for therapeutic management of PPHK, whereas treatment of UO by topical sirolimus 1% failed. No significant dermatological phenotype-genotype correlation was determined.CONCLUSIONS:A thorough knowledge of CFCS skin manifestations would help in making a positive diagnosis and differentiating CFCS from CS and NS