Visual Impairment, Inclusion and Citizenship in South Africa.

People with visual impairment face significant material challenges to access and inclusion in South Africa. These are in large part rooted in and supported by prejudiced assumptions about the needs, nature and capabilities of this group. The cultural and psychological face of oppression needs to be attended to. To this end, this viewpoint brings together the work of three visually impaired scholars in three key areas pertaining to the promotion of the inclusion and citizenship of visually impaired persons in South Africa. These areas are education; rehabilitation; and social inclusion and visibility. This work argues that undoing lifelong exclusion requires examining how disablism is embedded in the very fabric of our societies and operational at various levels: material, administrative, cultural and relational.

Perspectivas sobre a educação de alunos com deficiência na África do Sul: desafiando a cultura do silêncio

A África do Sul estabeleceu um sistema de Educação Inclusiva que mantém escolas especiais para atender estudantes que demandam grandes necessidades de apoio e centros de apoio vizinhos às escolas comuns. Embora haja discussão sobre o que agregam ou não as escolas especiais, existem relativamente poucos estudos que se propõem a compartilhar as perspectivas de estudantes dessas escolas. Este estudo baseia-se em entrevistas com 39 estudantes de seis escolas especiais e dois de centros educacionais de apoio. As entrevistas foram transcritas e submetidas à análise temática de conteúdo, o que revelou que os estudantes se sentem desapontados, pois suas deficiências não são compreendidas pelos professores. Eles expressam a necessidade de maior apoio social e psicológico relativo às suas experiências escolares, à deficiência e aos problemas sociais. Eles também apontam a necessidade de os professores serem mais pacientes e comprometidos. Os estudantes que vivem em instituições de acolhimento destacam as condições precárias de vida e a ausência de apoio dos cuidadores dessas instituições, o que impacta sua possibilidade de aprendizagem. As necessidades que foram identificadas pelos estudantes podem subsidiar professores que se interessam em melhorar a qualidade da educação ofertada.

Disability, relationship, and the negotiation of loss.

Oppressive stereotypes of invalidity and tragedy have positioned loss and grieving as contested issues in the field of disability studies. Ascriptions of 'denial' are rejected by many disabled people, as a reductive medicalisation of their lived reality. For these and other reasons, this paper asserts that disabled people are afforded limited or awkward social spaces for grief, be it to do with social positioning, embodiment, or any other aspect of human experience. This is significant because grieving may have an important relationship with political mobilisation, both personal and collective. The paper presents autoethnographic material from the life of the second author, who has lived with quadriplegia for more than three decades. Using ideas from critical psychoanalysis it traces how political, relational and intrapsychic mechanisms constrain and sanction his expression of feelings of loss, contributing to a relational predicament of melancholic suspension, analogous to that attributed to subordinated racial groups. Here, one is forced to strive for assimilation into an unattainable, ideal social role, while simultaneously being alienated from one's inner experience, with implications for both creativity and personal power. The paper concludes that, paradoxically, stereotypes are countered not by dissociation from grief, but rather the claiming of it.

Transitioning to a life with disability in rural South Africa: A qualitative study.

BACKGROUND: Adjustment to the onset of disability has complex reverberations relating to both socially engendered disadvantage and the realities of functional limitation. Pre-existing ways of understanding disability can meaningfully shape this experience. OBJECTIVE: This study aimed to provide an exploratory understanding of the experience of becoming disabled in a low-income, under-served, rural South African community. In particular, it was interested in how people with disabilities constructed their struggle within the conceptual split between disadvantage caused by 'malfunctioning' bodies (a 'medical model' view) and that caused by social organisation (a 'social model' view). METHODS: Seven people between the ages of 39 and 47 who had acquired a physical disability within the last 4 years were recruited in a rural area of Limpopo province, South Africa. Semi-structured face-to-face interviews were conducted, and the resulting data were thematically analysed. The authors were positioned as both 'insiders' and 'outsiders' to the participants and sought to use this orientation to best understand and stay faithful to participants' views while simultaneously applying participant's experiences to conceptual knowledge in disability studies. RESULTS: Four themes emerged: (1) emotional impact of onset of disability, (2) being introduced to disablist prejudice, (3) being required to take on a 'disabled' identity and (4) socio-economic implications of becoming disabled. The findings reflected a complex set of adverse experiences in the lives of the participants, spanning disadvantages based on embodied, cultural, relational and environmental factors, which were superimposed on existing, generalised poverty in their local communities. Participants made sense of their predicament in multiple, evolving ways. CONCLUSION: This study contributes to the understanding of the complex predicaments, and sense-making, of persons who have acquired a disability in a rural, impoverished Global South environment.

'This place is not for children like her': disability, ambiguous belonging and the claiming of disadvantage in postapartheid South Africa.

This paper presents an exploration of my experiences and unique positioning as a blind, White South African woman. It explores the complex intersections of multiple axes of identity in my own experience to do with disability, race, class and language and, in so doing, presents some ideas about the ways in which disability complicates and disturbs simplistic identity categories. It draws, in particular, on the experience of my first year of formal schooling which took place in 1994 as South Africa held its first democratic election, bringing a politico-legal, if not actual, end to decades of racial segregation. Using this experience, I explore the ways in which, against the sociopolitical backdrop of apartheid's racial segregation, ideas about race and disability, that is, Blackness and blindness, became entangled and how this entanglement impacted my ability to claim a place as either blind or sighted. Through this critical engagement I hope to be able to offer a perspective, not only on how the apartheid system operated, forcing the projection of negative characteristics onto Black people, but also on how this legacy continues to impact those of us who occupy unstable positions, at the intersection of privilege and marginality. Central to the argument is the position that the wholesale binding up of social disadvantage with race in the South African context prohibits and manages the status that persons with disabilities are able, or not able, to claim.

Views from the borderline: Extracts from my life as a coloured child of Deaf adults, growing up in apartheid South Africa.

BACKGROUND: Over 90% of Deaf parents have hearing children, but there are very few, if any, studies that have explored the life worlds of hearing children of Deaf adults (CODAs) in South Africa. This article is an account of part of the life experiences of a female hearing child who was born and raised by her Deaf parents in apartheid South Africa in the 1980s. OBJECTIVES: This study used auto-ethnography to explore the socialisation of a female coloured CODA during the height of South Africa's apartheid era, in order to shed light on intersectional influences on identity and selfhood. The study was intended to contribute to the limited knowledge available on the life circumstances of CODAs in Global South contexts. METHODS: Evocative auto-ethnography under a qualitative research paradigm was used to explore the life world of a now adult female hearing child of Deaf parents. Her thoughts, observations, reflections and involvements are articulated in a first person written narrative that is presented in this article. A thematic analysis approach was used to analyse data, and the themes that emerged are: (1) CODAs as language brokers, (2) being bilingual and trilingual, (3) being bicultural, (4) role reversal and parentification and (5) issues of identity. A discussion of these themes is interwoven with the literature, in an effort to provide a rich and robust analysis that contributes to the body of knowledge. RESULTS: Multiple identity markers that include disability, gender, race, age, nationality, culture and language intersect to frame the life world of a hearing child of Deaf parents who grew up in the apartheid era in South Africa. The result is both positive and negative life experiences, arising from being located simultaneously in both a hearing and Deaf world. CONCLUSION: This study suggests that, in part, the life world of a hearing child of Deaf parents is multi-layered, multidimensional and complex; hence, it cannot be presented with a single description. Recommendations that inform policy and practice are outlined in the concluding section of the article. KEYWORDS: Deaf parents; hearing child; CODA; identity; apartheid; South Africa.

Ties that bind, and double-bind: visual impairment, help, and the shaping of relationships.

Purpose: Scholars agree that effective rehabilitation relies on a bedrock of reciprocity, relational trust, and authenticity. It is therefore essential for practitioners to develop insight into the complex dynamics within helping relationships. This study aims to provide an in-depth understanding of visually impaired students' experience of informal helping relationships. Methods: Ten visually impaired students at a South African university participated in one of two semi-structured focus group interviews (six and four in each group, respectively) wherein we explored their experience of informal helping relationships. Interpretive phenomenological analysis was used to make sense of the data. Results: Help, according to the participants, can militate against visibility and complete acceptance, and has the potential to cause helpers to feel entrapped. By contrast, some students found that help offered benefits to relationships by boosting the helper's self-esteem and affording disabled students the opportunity to make friends. Conclusion: Decisions whether to accept help were mediated more by relationship factors than by the need for help. These findings are important for rehabilitation professionals, as deep relationship can come into being during the course of a rehabilitation process. Although this study was conducted in an informal setting, the relational dynamics that we explore are also applicable to clinical relationships between disabled persons and rehabilitation professionals. Implications for rehabilitation In this paper, we provide an overview of the intricacies involved in care and helping relationships; In order for rehabilitation to be successful, these relationships should ideally be real, trusting, and authentic; Yet, authenticity and spontaneity often get lost in helping relationships, as help-recipients may deny help when they need it, and accept help when perfectly able to cope without it. These decisions are mediated more by relationship factors than by the need for help; In their daily practice, it is essential for health professionals to be mindful of these relational intricacies within care relationships; We recommend that professionals remain motivated to continuously reflect on their own actions and on the emotional investment they might have in their role as a helper; Our last recommendation is for rehabilitation professionals to spend energy on exploring, through open and transparent discussions with their disabled patients, the relational dynamics in their relationship.

A web of gaps: a discussion of research strands concerning Global South families with a disabled child.

BACKGROUND: In low- and middle-income countries (LMICs), limited access to a range of supports means that families often carry primary responsibility for the care of a disabled child. The impact of this responsibility is poorly understood. OBJECTIVE: To present a selective review, critique, and comparison of the prominent areas of research aimed at understanding families with disabled children in the Global South. DESIGN: We compare and critically discuss prominent bodies of literature concerning the family-disability-poverty nexus in LMICs. RESULTS: Three prominent bodies of literature concerned with families with a disabled child in LMICs are reviewed. These were selected based on their relative prevalence in a large review of the literature, and comprise (1) work concerning quality of life (FQOL) of families with a disabled child; (2) interventions aimed at supporting families with a disabled child in LMICs; and (3) the ways in which culture mediates the families' experience of disability. FQOL research points to poverty as a primary source of family distress, and directs our focus towards families' own expertise in coping with their circumstances. Intervention literature from LMICs highlights the family as the unit of analysis and praxis concerning disabled children, and reminds us of the contextual factors which must be considered when working with their families. CONCLUSIONS: Culturally oriented research on poverty, disability, and the family nuances our understanding of the locally-determined priorities of families with a disabled child in LMICs. All three research strands carry benefits, limitations and gaps. The complexity of understanding families with a disabled child in LMICs comes to the fore, directing us away from narrow application of any single theoretical or research framework. Future researchers may draw on insights provided here in creating a more integrated approach.

"I Don't Have Time for an Emotional Life": Marginalization, Dependency and Melancholic Suspension in Disability.

Social scientific analyses of inequality inform interventions ranging from the material and political to the personal and psychological. At the extremes of this continuum, Marxian militants view the exploration of the inner lives of oppressed people as irrelevant to liberation, while psychoanalysts bemoan the naïveté of "depsychologized" conceptions of the social subject. While both approaches have been applied to disability inequality, an historical materialist view has dominated the discipline of disability studies, where attention has only recently turned to psychological aspects of oppression. This article provides a brief introduction to some key aspects of the social and economic marginalization experienced globally by the disability minority. Thereafter, the complex debates around materialist and psychological accounts of, and interventions upon, racism and disablism are explored and compared, with particular reference to the place of grief and loss in disability discourse. The clinical fragment which forms the title of this paper introduces an engagement with Cheng's model of racial melancholia, its conceptual origins and explanatory power. The balance of the paper considers how Cheng's work may help illuminate how it is that disability inequality, like that of race, may remain an obstinate reality notwithstanding material interventions aimed at overturning it.

To be or not to be: Stuttering and the human costs of being "un-disabled".

PURPOSE: The centrality of communicating in human life means that communication difficulties are experienced at a deeply personal level and have significant implications for identity. Intervention methods may interact positively or negatively with these experiences. METHOD: This paper explores this intersection in the case of stuttering, suggesting that some intervention styles may dovetail unhelpfully with the "mainstream" prizing of normalcy. In particular, most "western" societies offer a performance-oriented milieu which prizes efficiency, immediacy and competitiveness, diverting energy from the equally important work of understanding and integrating difference. RESULT: Given that a person who stutters speaks fluently and with a stutter, stuttering can lean toward a complex view of disability identity-being both able and disabled. This split repertoire invites psychologically costly efforts at being "un-disabled". CONCLUSION: Interventions which amplify this tendency can contribute to an alienation from self amid strivings for normalcy.

Freedom to read: A personal account of the 'book famine'.

Even in the digital age, access to literature and other information for people with print impairments remains extremely poor, especially in the developing world. Reading access holds cascading implications for education, economic empowerment, social participation and self-worth. In June 2013 member states of WIPO (the World Intellectual Property Organization) concluded a landmark treaty to reduce copyright impediments to the dissemination of literature to print impaired people. Its effectiveness is not yet clear. Meanwhile, critics hold that disability studies' analyses have too often lacked insight into the personal and psychological ramifications of exclusion. This article provides an account of the 'book famine' from the perspective of a print impaired South African disability researcher, arguing that thorough investigation of the impressions of exclusion is necessary for change. The account highlights the personal, even malignant psychological reverberations of deprivations such as the 'book famine', which may carry traumatic effects which cement the status quo.

Disability and countertransference in group psychotherapy: connecting social oppression with the clinical frame.

Psychoanalysis has paid limited attention to disability, and at times the approach has lacked political awareness. Over recent decades the international disability rights movement has argued that disabled people constitute an oppressed, systemically disadvantaged minority. Lately, a critical psychoanalytic view has connected disablist discrimination to universal unconscious conflicts evoked by impairment. Corresponding evocations emerge in the therapeutic frame, producing countertransference responses to the impaired body. Drawing on psychoanalytically oriented group psychotherapy with severely physically impaired adults, countertransference phenomena were studied in developing discussion on disability-related clinical work. The complex, uncertain role of psychoanalytic practice in combating oppression was also examined. Key issues include challenges to the traditional frame, the crossing of psychic boundaries, anxieties relating to not knowing, and the role of unconscious factors in marginalizing disabled experience.