Abstract:
This thesis presents the reported experiences of six parental caregivers raising a child with a communication disorder within the South African city context of Johannesburg. Following an interpretative phenomenological analysis of the interview transcripts, the researcher identified seven main themes: Difficulties in Early Identification; Systemic Parental Disempowerment; Barriers to Access; Disability-Related Emotions and Personal Sacrifice; Social Perceptions of Disability; Special Needs Education System; and “I needed to be a mommy”. The parental caregivers relayed both positive and negative experiences in raising a child with a communication disorder. However, many of the parental caregivers were overwhelmed by negative emotional experiences of loss, frustration, worry and fear of the future. The caregivers reported experiencing many barriers to access including: an overreliance on the private sector, financial barriers, time constraints, limited resources and poor information on available resources. Furthermore, they experienced intervention services as disempowering because of the focus on epidemiology and intervention, leaving them feeling inadequate and impotent in trying to ‘fix ’their children. The research highlights the importance of considering how barriers to care may marginalise and seclude parental caregivers. Over time, the caregivers were able to empower themselves through building their own knowledge and reformulating their narratives by challenging assumptions and retitling the source of disability as a product of the failure of society. The research emphasises that the parental caregivers’ experiences cannot be separated from the social context within which they are produced. Furthermore, the thesis offers a developed understanding of various factors that lead to the structural, economic and cultural exclusion of people with disabilities and how they continue to be perpetuated in the South African city context of Johannesburg
