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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.

Ethical and methodological issues in research with Sami experiencing disability

MELBØE, Line
HANSEN, Ketil Lenert
JOHNSEN, Bjørn-Eirik
FEDREHEIM, Gunn Elin
DINESEN, Tone
Minde, Gunn-Tove
RUSTAD, Marit
2016

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Background. A study of disability among the indigenous Sami people in Norway presented a number of ethical and methodological challenges rarely addressed in the literature.

 

Objectives. The main study was designed to examine and understand the everyday life, transitions between life stages and democratic participation of Norwegian Sami people experiencing disability. Hence, the purpose of this article is to increase the understanding of possible ethical and methodological issues in research within this field. The article describes and discusses ethical and methodological issues that arose when conducting our study and identifies some strategies for addressing issues like these.

 

Methods. The ethical and methodological issues addressed in the article are based on a qualitative study among indigenous Norwegian Sami people experiencing disability. The data in this study were collected through 31 semi-structured in-depth interviews with altogether 24 Sami people experiencing disability and 13 next of kin of Sami people experiencing disability (8 mothers, 2 fathers, 2 sister and 1 guardian). Findings and discussion. The researchers identified 4 main areas of ethical and methodological issues. We present these issues chronologically as they emerged in the research process: 1) concept of knowledge when designing the study, 2) gaining access, 3) data collection and 4) analysis and accountability.

 

Conclusion. The knowledge generated from this study has the potential to benefit future health research, specifically of Norwegian Sami people experiencing disability, as well as health research concerning indigenous people in general, providing scientific-based insight into important ethical and methodological issues in research with indigenous people experiencing disability.

Exploring Conceptualisations of Disability: A Talanoa approach to Understanding Cultural Frameworks of Disability in Samoa

Picton, Catherine
Horsley, Mike
Knight, Bruce Allen
2016

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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.

Including alternative stories in the mainstream. How transcultural young people in Norway perform creative cultural resistance in and outside of school

DEWILDE, Joke
SKREFSRUD, Thor-André
2016

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The development of an inclusive pedagogy takes on new urgency in Norwegian schools as the student body has become increasingly culturally and linguistically diverse. Traditionally, the Norwegian school has been dominated by homogenising and assimilating discourses, whereas alternative voices have been situated at the margins. In response to this tendency, we present two transcultural students’ autoethnographic stories produced in alternative spaces to the Norwegian mainstream, that is, in a transition class for newly arrived students and on Facebook. Both spaces are perceived as contact zones in the sense that they are culturally and linguistically complex. This article illustrates how the students perform cultural and linguistic resistance towards dominant homogenising discourses as the transition class and Facebook seem to offer opportunities for constructing alternative stories. Moreover, we contend that these alternative stories offer important knowledge for conventional education contexts since they represent stories of competence in contrast to the assumed limitations of these students.

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