1. Recognition and the role of family in
belonging, being and becoming in Uganda
Femke Bannink Mbazzi & Geert van Hove
Inclusive Education and Disability Studies, Faculty of Psychology and Educational Sciences,
Ghent University, Ghent, Belgium
Corresponding author:
THEORETICAL FRAMEWORK
The concepts of being, belonging, and becoming have been key elements in childhood disability studies (Brown, 2003; Hall, 2010; Woodill et al, 1994). Central concepts in Childhood Disability Studies in Africa are family, cultural conceptions of disability, poverty, and the notion of ubuntu: “I am because we are” or “humanity to others” (Bannink et al, 2016; Chataika & McKenzie, 2013; Oppenheim, 2010).
BELONGING TO A FAMILY AND CLAN
Belonging to a clan and tribe is the starting point of being. At birth a child is given a clan’s name in the Baganda tribe, the tribe is patrilineal. Without this name one is not recognized as a member of the clan and ‘does not have a family’. Recognition is of life importance in a country where a child solely depends on family members for care; implementation of governmental child protection and child care legislations is lacking.
The single mothers in our study pointed out that their children did not ‘have family’, in other words, they had not been accepted by their father(‘s clan) and did not receive any rights related to his family, such as inheritance and the obligation of the father to financially contribute to the upbringing and schooling of the children. The lack of belonging to a family, and financial support was difficult for mothers to live with.
The families where fathers did accept their child described how belonging was more difficult for children who had visible impairments at birth than those whose disabilities became visible later on. Mothers who remarried often still had the sole responsibility in looking after the child with the disability from an earlier marriage.
METHODS
In this study we interviewed 78 caregivers (parents, older siblings, and other caregivers) of children with neuro-disabilities in central Uganda about belonging. Interview transcripts were analysed using NVIVO.
“My family has no problem, it’s only her [the father’s] family that wants nothing to do with her. Actually the only thing that challenges me is that she no longer has a family [extended family and clan]. When her father saw her he said for them they don’t produce such kids, that she is not their child.”
RECOGNITION
Butler’s concept of recognition as “an act of subjectification, in which the individual subject is pressed towards the norm, even while being recognized in their specificity and difference” (Butler, 1997) applies in the Ugandan setting where one has to take up a social category to be and become. However this recognition does not automatically results into what Butler calls an autonomous, repressed subject, but rather creates a pathway for interactions between the subject and the environment in which being is developed. Being is evolving and is an expression of interaction between social categories, and individual actions of becoming from various actors to acquire recognition.
When children with disabilities are seen as part of the ‘we’ the ubuntu concept enables care, support, and inclusion. When this is absent, family members either choose to accept exclusion from the social category (and the child often dies) or fight for recognition and belonging through showing daily that they individually have recognized their child and would like others to consider to do the same. They do not accept the role of autonomous, repressed subject.
BEING
When choosing words to describe disability and children with disabilities, parents mostly referred to children ‘who cannot manage certain tasks’, ‘children who have missing parts’, and ‘children who are unlike other children’. Parents stressed the importance of participation in daily household tasks, and would show or list the things their child could engage in such as washing clothes, dishes, and cooking.
BECOMING
Children who were able to participate in daily tasks were more likely to be seen as ‘part of the family’, and parents would be more motivated to provide care and support for this child, including sending them to school and taking them to social events. Decisions to do so were influenced by attitudes of relatives and community members, who over time tended to have more positive attitudes when they noticed parents did not treat the child as a ‘curse’ and the child was able to participate in daily activities. A number of parents mentioned how over time community members started approaching them as experts.
Family members in our study felt supported in seeking recognition when meeting with other families in community based rehabilitation networks, and family led community based groups. They re-created a sense of community and belonging within a group of families with children with disabilities, which enabled them to fight for recognition (especially single mothers) for their child to be and enable the child and family members to become.
“Some community members ask me how I managed. Their response changed because they first said I was bewitched, but now they contact me for guidance when there is someone else with a disability in the community.”
CONCLUSION
We argue for more family led initiatives and support and propose a theoretical framework with starts with belonging, followed by being, and becoming. Belonging in this framework is closely tied to recognition, whilst being is about interdependency between the child and family and community members enabling the child to become.
This study was funded by the International Federation for Spina Bifida and Hydrocephalus and implemented in collaboration with Ghent University and Katalemwa Cheshire Home Uganda