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Background: Cerebral palsy (CP) is a non-progressive disorder of posture or movement caused by a lesion to the developing brain that results in functional limitations. The diagnosis of CP can vary from one child to another, causing family stress because of vague and unknown outcomes of the disorder. Although there are negative attitudes in Ghanaian societies towards primary caregivers and children with disabilities, fewer attempts have been made to understand their experiences.

Objectives: The main aim of this study was to explore the experiences of primary caregivers across the trajectory of the diagnosis (before, during and after) of CP in the setting of a tertiary hospital.

Method: Using Social Capital Theory as framework, 40 primary caregivers of children with CP, who were receiving treatment at a major referral hospital in Ghana, were interviewed about their experiences before, during and after diagnosis.

Results: The results that emerged from the thematic analysis were discussed as follows: experiences before diagnosis, experiences during the diagnosis and experiences after the diagnosis. Particularly, participants discussed their inability to access essential services such as education for their children with CP.

Conclusion: In light of systemic challenges faced by participants and their children with CP, the need for health policymakers to prioritise the public education about CP, promoting the well-being of caregivers and other implications of the study have been discussed.

African Journal of Disability, Vol 8, 2019

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.

African Journal of Disability, Vol 8, 2019

Objectives: Although an extensive amount of research has been devoted to models defining cultural competence of healthcare professionals in short-term care, there is unclarity about the cultural competencies that professionals providing lifelong care and support should have. The current study aimed to explore which cultural competencies are used by these healthcare professionals, and whether these competencies enabled them to make cultural adaptations to their regular care practices.

Design: To investigate cultural competencies and cultural adaptations, semi-structured in-depth interviews were conducted with eight professionals who provide lifelong care and support to individuals with intellectual disabilities. Five cultural competencies were explored: awareness, knowledge, skills, motivation, and encounters.

Results: A thematic analysis of the interviews revealed that professionals providing lifelong care and support used all cultural competencies in their care practices. Moreover, our analysis suggested that these competencies could be categorized as either practical or analytical cultural competencies. Although these competencies were conditional in order to make cultural adaptations to care practices, the presence of cultural competencies did not automatically lead to these cultural adaptations. Conclusions: All five cultural competencies were used by professionals in lifelong care and support. Our analysis revealed that both practical and analytical cultural competencies were essential in providing culturally sensitive lifelong care and support. We additionally suggest that the cultural competence of professionals is necessary, but not sufficient, for making cultural adaptations to lifelong care and support for individuals with intellectual disabilities. In many cases, other factors also played a role in a professional’s final decision to adapt their care practices.

Conclusions: All five cultural competencies were used by professionals in lifelong care and support. Our analysis revealed that both practical and analytical cultural competencies were essential in providing culturally sensitive lifelong care and support. We additionally suggest that the cultural competence of professionals is necessary, but not sufficient, for making cultural adaptations to lifelong care and support for individuals with intellectual disabilities. In many cases, other factors also played a role in a professional’s final decision to adapt their care practices.

Background: This article emanates from a study funded by the KwaZulu-Natal chapter of South Africa’s National Research Foundation on the ‘Archaeology of Ubuntu’. It explores the notion of ubuntu and disability in a group of Zulu people from four communities within KwaZulu-Natal. The study is based on the notion that ubuntu is humaneness. Being human is linked to notions of care, respect and compassion.

Objectives: The article explores the treatment of people with disabilities from the elders’ perspectives in this community.

Method: This article is based on qualitative data resulting from structured interviews conducted in the KwaZulu-Natal Province between February and March 2015.

Results: The results reveal that society considered the birth of a disabled child as a curse from God and punishment from the ancestors. The results also indicate that people with disabilities were excluded from community activities; marrying a disabled person was unthinkable because they were stigmatised and dehumanised. The work of Hannah Arendt is used to interrogate people’s perceptions of others with disabilities in their communities.

Conclusion: The article posits that treatment of people with disabilities is not cast in stone but can be renegotiated and restructured through community engagement to represent genuine inclusion.

This study aimed to provide better understanding of intimacy and marriage, pregnancy, birth, and motherhood experiences of women with disability in Ethiopia. Qualitative, in-depth, and semi-structured interviews along with personal observations were used to explore the full experiences of participants, as told in their own words. The result of the interviews indicated that relationships and motherhood proved a very rewarding option for women with disabilities. They also expressed their need for intimacy regardless of society’s denial. Challenges identified include negative societal attitudes toward women with disabilities regarding relationship, pregnancy, and child-rearing. Accessibility of health centers in addition to the ignorance and negative attitudes of the physicians are also reported to be major challenges for the interviewees. This study highlights how rewarding the experience of motherhood was for the interviewees and also shows that women with disabilities face challenges at every step of their experiences, because of society’s prejudices toward disability.

Drawing from my first-hand observations and embodied experiences of having collaborated with HORA over the course of several years, this paper discusses an under-investigated area within the field of disability and performance: pioneering work by directors and with learning or cognitive disabilities, an area which has not yet been addressed in the expanding field of disability and performance studies.

Background: Rehabilitation personnel need to be sensitive to the cultural aspects that constitute the environment of a disabled child’s family life.

Objectives: The aim of this study was to gain insight on how families experience parenting of disabled children and how the families experience the support provided by the rehabilitation system in Malawi.

Method: An anthropological field study combining interviews and observations was conducted in a rural district of Malawi in 2011. Permission was granted to follow four families, and this study presents the stories of two families, whose children have severe disabilities. We used phenomenological and narrative analyses to make sense of the stories.

Results: The findings indicate that families with disabled children invest time and emphasise care for their disabled children. They feel enriched by their experience despite challenging situations with little support from the rehabilitation services. High standards of care demonstrating positive and moral attitudes have earned these families respect in their communities. Storytelling has created an opportunity for the families to understand and interpret their challenging situation with inherent contextual meaning.

Conclusion: This study shows that families with disabled children draw on cultural and structural strengths that rehabilitation professionals should be aware of in their support to mothers and other caregivers of children with disabilities.

Purpose: The concepts of disability were explored from a Samoan cultural frame. The impact of disability conceptualisations on identity development and cultural inclusion were assessed through the Samoan language. The study also evaluated the extent of endorsement of global policy initiatives at a local level.

Methods: Through facilitating a Talanoa approach, which is a rich cultural tradition of sharing knowledge, space emerged for dialogue around the lived experiences of members of the disability community in Samoa.

Results: Incongruous conceptualisations of disability were identified as a contributing factor in the persistence of stigmatising attitudes and beliefs. Borrowing concepts and terms from moral, medical, and social disability models, this disparity of conceptualisation is reflected in Samoan disability terminology. It was also found that while global policy initiatives are generally politically embraced, they engage more effectively with the community when they areunderpinned by Samoan cultural ontologies.

Conclusion: The findings suggest that multiple ideologies regarding rights, capabilities and experiences, challenge the development of identity, self-worth, and inclusion. There is significant value in merging cultural concepts with a social disability model framework. It is important to future development that people with disability can express a sense of cultural identity without risking the right to inclusion and equality.

Background: Partly because of the legacy of apartheid, and despite being a constitutional democracy, South Africa continues to be a deeply divided society, particularly along racial lines. In this context many people with albinism do not fit neatly into black and white categories and are likely to experience social discrimination and marginalisation.

Objectives: The study endeavoured to explore the beliefs and practices regarding albinism within a South African university, and the availability of support services.

Method: The research was located within an interpretive qualitative paradigm and was framed within the theories of stigma, discrimination and ‘othering’. Interviews were conducted with five students with albinism and 10 students without albinism.

Results: Findings confirmed the existence of myths and stereotypes regarding albinism. Students with albinism tended to exclude themselves from the rest of the student community to avoid discrimination and stereotypes around their condition.

Conclusion: People with albinism can teach us about social constructions of race, colour and relations between minority groups and the majority culture. Results have implications for schools, disability units at universities, and albinism societies in terms of opening up channels of communication between people with albinism and the general public and fostering knowledge and awareness thereof.