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The experiences of parents of children living with disabilities at Lehlaba Protective Workshop in Sekhukhune district of Limpopo province

TIGERE, Brian
MAKHUBELE, Jabulani C.
September 2019

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Background: Parents of children with disabilities have faced difficulties in looking after their children, be it socially, economically and financially. Parents in rural areas are mainly left with a huge burden, as there is a lack of services and support from both the state and non-governmental organisations. Parents in Sekhukhune district, a rural area in Limpopo province of South Africa, face challenges in raising their disabled children related to lack of resources and lack of services at their disposal.

 

Objectives: This study focuses on the experiences and life circumstances faced by parents of children living with different types of disabilities at Lehlaba Protective Workshop in Sekhukhune district of Limpopo province, South Africa.

 

Method: The study consisted of 14 participants who are parents of children living with disabilities. An interview guide with a set of questions was utilised to gather data. Thematic analysis was used to analyse the data and themes that emerged were grouped together.

 

Results: Themes that emerged from the data showed that most of the participants had varying understandings on the causes of disabilities to their children. The participants also were of the view that a ‘cure’ for disability was available medically, spiritually or through traditional African medicine. The study also brought the notion of absent fathers, as most men do not want to be associated with children who are disabled. Stigmatisation of the parents was also a theme that the study revealed. The parents are subjected to name labelling as they are viewed to be practising witchcraft or to be paying for their sins they committed.

 

Conclusion: Parents of children with disabilities are in their own battle in raising their children. There is a lack of support structures available for parents of children living with disabilities. There is a lack of legislation available for protecting and promoting the rights of children with disabilities. The researchers concluded that raising a child with a disability is expensive, time-consuming and straining.

 

 

African Journal of Disability, Vol 8, 2019

Experiences of primary caregivers of children with cerebral palsy across the trajectory of diagnoses in Ghana

KYEREMATENG, Joana D.A
EDUSEI, Anthony
DOGBE, Joslin A.
OPUKU, Maxwell P.
NKETSIA, William
HAMMOND, Chrales
AFRIYIE, Sally A.
September 2019

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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

Family-based activity settings of children in a low-income African context

BALTON, Sadna
UYS, Kitty
ALANT, Erna
2019

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Background: There has been an overwhelming call to improve the understanding of how children develop within an African context as Euro-American definitions of competence have been uncritically adopted as the norm for children in Africa. The activities that children engage in within the family setting are seen as important to understand how children develop within context. The use of activity settings is closely aligned with a strengths-based perspective of family-centred practice and contributes to improved sustainability of intervention.

 

Objectives: This study that was conducted in Soweto, South Africa, aims to describe activity settings that typically developing young children in low-income African contexts participate in.

 

Method: A descriptive design using structured interviews was utilised to obtain information about activity settings that children aged 3–5 years and 11 months engaged in. Structured interviews with 90 caregivers were conducted.

 

Results: Findings show that children participate in a variety of activities with varied participation levels. The types of activities are dependent on the context and perceptions of caregivers.

 

Conclusion: These findings draw attention to understanding activities that children engage in within the family context.

 

African Journal of Disability, Vol 8, 2019

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

HARRISON, Jane
WATERMEYER, Brian
2019

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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

‘We only got Coca-Cola’: Disability and the paradox of (dis)empowerment in Southeast Nigeria

NWOKORIE, Okechukwu V.
DEVLIEGER, Patrick J.
2019

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Background: Empowerment is the generic name for support services for persons with disability in Nigeria. In it, the elites of the society play leading roles. Special events such as anniversaries, Christmas seasons, wealthy people’s birthdays, investiture of new titles and campaigns before general elections often provide occasions for empowerment programmes.

 

Objectives: This article explores discourses of empowerment of persons with disability in Southeast Nigeria. We concentrate on the relation between local elites and the disability community and how it impacts our understanding of empowerment. Conceptualising empowerment as worldmaking, and disability as something that is ambiguous, we challenge the assumption that the aim of empowerment of disabled people is to improve their (disabled people’s) quality of life.

 

Method: This article relies on research data (collected between January 2014 and January 2017) comprising 72 interviews and participant observations from 27 persons with disability, and 13 social workers and senior government officials.

 

Results: We conclude that discourses of empowerment of disabled people frame disability as loss and tend to conceal the personal stories and survival operations of disabled people.

 

Conclusion: Empowerment discourses ironically provide the platform for local power elites to ‘ride’ to fame on the backs of disabled to extend their influence in society. In the current neoliberal environment of unequal access to opportunities, disabled people must ‘play along’ as a survival strategy. Our qualitative data provide opportunities to reflect on the tensions between the ‘local and the global’, thus indicating how disability issues intersect with other wider questions.

 

 

African Journal of Disability, Vol 8, 2019

Ubuntu considered in light of exclusion of people with disabilities

NGUBANE-MOKIWA, Sindile A.
2018

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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.

Living with disabled children in Malawi: Challenges and rewards

BARLINDHAUG, Grete
UMAR, Eric
WAZAKILI, Margaret
EMAUS, Nina
2016

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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.

Being black in a white skin: Beliefs and stereotypes around albinism at a South African university

PHATOLI, Relebohile
BILA, Nontembeko
ROSS, Eleanor
2015

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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.

Deaf identities in a multicultural setting: The Ugandan context

MUGEERE, Anthony B
ATEKYEREZA, Peter
KIRUMIRA, Edward K
HOJER, Staffan
2015

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Often located far apart from each other, deaf and hearing impaired persons face a multiplicity of challenges that evolve around isolation, neglect and the deprivation of essential social services that affect their welfare and survival. Although it is evident that the number of persons born with or acquire hearing impairments in later stages of their lives is increasing in many developing countries, there is limited research on this population. The main objective of this article is to explore the identities and experiences of living as a person who is deaf in Uganda. Using data from semi-structured interviews with 42 deaf persons (aged 19–41) and three focus group discussions, the study findings show that beneath the more pragmatic identities documented in the United States and European discourses there is a matrix of ambiguous, often competing and manifold forms in Uganda that are not necessarily based on the deaf and deaf constructions. The results further show that the country’s cultural, religious and ethnic diversity is more of a restraint than an enabler to the aspirations of the deaf community. The study concludes that researchers and policy makers need to be cognisant of the unique issues underlying deaf epistemologies whilst implementing policy and programme initiatives that directly affect them. The upper case ‘D’ in the term deaf is a convention that has been used since the early 1970s to connote a ‘socially constructed visual culture’ or a linguistic, social and cultural minority group who use sign language as primary means of communication and identify with the deaf community, whereas the lower case ‘d’ in deaf refers to ‘the audio logical condition of hearing impairment’. However, in this article the lower case has been used consistently.

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