Judith McKenzie

Access to education in Africa: responding to the United Nations Convention on the Rights of Persons with Disabilities

Article 24 of the United Nations Convention on the Rights of Persons with Disabilities mandates that disabled people should have full rights to education in inclusive settings. However, to ensure that educational polices and settings are designed to meet this criterion seems challenging to African countries that have ratified this Convention. This article arises from the 2nd African Network of Evidence-to-Action on Disability Symposium. This fluid network was established to address the gap between research and practice in the region. The article reports proceedings and the emerging themes from the Education, Training and Work Commission; one of the six commissions of this Symposium, focusing specifically on the education aspect. It also challenges various stakeholders to move from evidence to action to ensure the educational rights of disabled people in inclusive settings.

Intellectual disability in Africa: implications for research and service development

Abstract Although intellectual disability (ID) is probably the largest impairment grouping on the African continent, few indigenous research and evaluation studies have been undertaken. This article is an initial attempt to relate service delivery issues to an African research agenda. We critically analysed the available literature, drawing on academic publications and those of non-governmental agencies. In this process we identified several key issues for further investigation, namely: understanding ID in African contexts, access to education and health care, the provision of appropriate assistance and support, and income generation. We relate our analysis to the recommendations made in the World Report on Disability but with a specific focus on ID in Africa. The need for mainstreaming and prioritising ID in non-disability related and across impairment programmes is highlighted. We note the importance of families and emphasise the need to draw on informal and traditional forms of care and participation. The need for reliable research evidence to support practice is highlighted. We conclude with a call to action by and on behalf of individuals with ID to be included in the development priorities of the continent. Implications for Rehabilitation Service provision for people with intellectual disabilities in Africa is not always well served by insights obtained from western research agendas. Appropriate and effective rehabilitation requires an understanding of the context and the environment in which the disabled person operates. Indigenous research into the provision of support to families and the inclusion of persons with intellectual disability into mainstream programmes as well as disability specific provision is recommended.

Disabled people in rural South Africa talk about sexuality

Disability is emerging as a human rights issue of public concern, rather than an individual tragedy requiring medical attention. The issue of sexuality remains relatively neglected in this agenda, particularly as regards the exploration of the complexities of sexuality encountered by disabled people themselves. This paper focuses on the experiences of sexuality of disabled people and parents of disabled children in settings of poverty in the Eastern Cape Province of South Africa. Three individual interviews and two focus groups were conducted with disabled adults and parents of disabled children. Thematic analysis of the interviews identified three principal themes (1) sexuality development in the family of origin, (2) sexuality in the community and (3) adult sexuality and creating families. Each of these larger themes encompasses various sub-themes that are discussed in the findings. The paper concludes that while sexuality is a very difficult aspect of life for a disabled person due to myths and discrimination against disabled people, it is also an important arena for affirmation and establishing self-worth. It is therefore critical to consider the development of a healthy sexuality amongst disabled people and the promotion of their sexual rights.

The implementation of inclusive education in South Africa: Reflections arising from a workshop for teachers and therapists to introduce Universal Design for Learning

South Africa has adopted an inclusive education policy in order to address barriers to learning in the education system. However, the implementation of this policy is hampered by the lack of teachers’ skills and knowledge in differentiating the curriculum to address a wide range of learning needs. In this paper we provided a background to inclusive education policy in South Africa and a brief exposition of an instructional design approach, Universal Design for Learning (UDL) that addresses a wide range of learning needs in a single classroom. We reported on a workshop conducted with teachers and therapists in South Africa as a first attempt to introduce UDL in this context. Knowledge of UDL was judged to be appropriate and useful by the course participants in the South African context as a strategy for curriculum differentiation in inclusive classrooms. Furthermore, knowledge of the UDL framework facilitates dialogue between teachers and therapists and provides a relatively simple and comprehensive approach for curriculum differentiation. We therefore conclude that there is potential for this approach that can be expanded through further teacher training.

Models of intellectual disability: towards a perspective of (poss)ability

BACKGROUND The social and medical models of disability configure the relationship between disability and impairment differently. Neither of these models has provided a comprehensive theoretical or practical basis for talking about intellectual disability (ID). Models that emphasise the interactive nature of disability appear to be more promising. This study explores the ways in which models of disability are reflected in disability discourse in an empirical discourse analysis conducted in the Eastern Cape Province of South Africa. METHODS Q methodology was used in this study as a discourse analysis tool. Adults with ID, parents of children with ID and professionals who work with people with ID completed a sorting task where they stated the degree to which they agreed or disagreed with statements that are made about people with ID. This exercise resulted in a pattern of responses for each participant, termed a Q sort and these were used as data in a factor analysis using dedicated Q method software. A second order factor analysis was then performed on the resulting factors. RESULTS Four discourses were identified: the Social Model/Human Rights Discourse, the Medical Model/Professional Religious Discourse, the Community Model/Community Religious Discourse and the Interactive Discourse. Except for the last one, each of these discourses adopts a model of disability with a static view of impairment as fixed. The Interactive Discourse appears to be related to dynamic, environmental conceptions of disability where competence is built through social interaction. CONCLUSIONS A theory of (poss)ability is proposed and some of its concerns are suggested. This perspective views impairment as an interaction between individuals and their environment and postulates that competence is a function of context, rather than a property of the individual.

Rights discourses in relation to education of people with intellectual disability: towards an ethics of care that enables participation

In this paper we argue that human rights approaches for intellectually disabled people have failed to recognise the complexity of rights claims made by and on behalf of this group. Drawing on a research project into discourses of education for intellectually disabled people in the Eastern Cape, South Africa we discern three rights discourses; namely, rights to full participation, rights to special services and rights to protection. These draw off a social model, a medical model and a protective model, respectively. We note that these discourses may be set up in contestation with each other. However, we argue that they can be seen as complementary if viewed within an ethics of care that enables participation. Within this conceptualisation, participation is viewed within relations of care but is subject to a critique that examines the role of context and disciplinary power in constructing dependency.

Caring for Adults with Intellectual Disability: The Perspectives of Family Carers in South Africa

BACKGROUND Internationally adults with intellectual disability are largely cared for by their families, especially in low- to middle-income countries (LAMIC). Compared to high-income countries, little is known about their experiences in LAMIC such as South Africa. METHODS Focus group discussions were carried out with 37 family caregivers (FCGs) in the Cape Town metropole. These were transcribed and analysed thematically. Core categories were identified and validated through member checking. RESULTS Family caregivers showed strong commitment to care despite the heavy responsibility and burden of care that women especially experience. They recognize the limited personal growth opportunities for people with intellectual disability that increases the caregiving burden. FCGs identify supports and resources in the community that assist them with their care responsibilities but often feel let down by services. CONCLUSIONS Improved family supports appropriate to the resources in LAMIC are needed especially when existing carers are no longer able to provide care.

A case for the use of Q-methodology in disability research: lessons learned from a training workshop.

Purpose. Q-methodology was developed to analyse subjective responses to a range of items dealing with specific topics. This article describes the use of Q-methodology and presents the results of a Q-study on perspectives on disability carried out in a training workshop as evidence for its usefulness in disability research. Method. A Q-sort was administered in the context of a training workshop on Q-method. The Q-sort consisted of statements related to the topic of disability. The responses were analysed using specifically developed software to identify factors that represent patterns of responses. Results. Twenty-two of the 23 respondents loaded on four factors. These factors appeared to represent different paradigms relating to the social, medical and disability rights models of disability. The fourth factor appeared to be that of a family perspective. These are all models evident in the disability research literature and provide evidence for the validity of Q-method in disability research. Conclusion. Based on this opportunistic study, it would appear that Q-methodology is a useful tool for identifying different view points related to disability.

Mothers of disabled children: in mourning or on the march?

A traditional psychoanalytic view of parenting a disabled child emphasises responses of shock, grief and depression. Parent activists and social model disability authors dismiss such accounts as destructive and prejudiced, foregrounding structural barriers to accessing services and resources. Further, psychoanalysis is criticised for its anachronistic, ideologically uncritical discourse. Each position brings valuable insights as well as silences. This paper seeks to overcome an assumption of mutual exclusivity by creating a new synthesis, drawing on the work of Winnicott and Kittay. Conclusions are that it is both possible and necessary to allow for ambivalent feelings within parents, while attending to the external, material realities of contextual factors.

Voices from the periphery: A narrative study of the experiences of sexuality of disabled women in Zimbabwe

abstract This article forms part of a larger biographical narrative study in which the experiences of sexuality of 16 Shona women with disability in Zimbabwe were explored. The purpose of this article is to use a single case, that of Tsitsi,to illuminate the intersectional nature of her experiences of sexuality. Her narrative is robust in illuminating the confluence of four themes found to be common across all the narratives of the larger study: 1) disregard and rejection; 2) health consequences of gendered sexual stigma; 3) gendered differences in experiences of disability; and 4) gendered cultural discourses on disability. These themes indicate that Tsitsi is located at the centre of a complex, intersecting web of gender, disability, culture and sexuality. Her experiences of sexuality occur in a context in which her disability interacts with normative gender roles and power relations within heteronormative practices and popular cultural constructions of disability; these contribute to her vulnerability to coercive sexual practices, resulting in her infection with HIV. Despite these challenges her determination and resilience emerge through her strong entrepreneurial effort, strategy and hope.