Parent-Led Activism and Children with Disabilities in South Africa

Parents and caregivers of children with disabilities often act as representatives, mediators, and advocates for their children, partly out of necessity and partly due to the bias of adult-centered agency. This chapter engages with the literature on parent-led activism in South Africa. It also engages with broader activist campaigns which, due to their nature, sometimes subsume the voices of grassroots actors and the parents who tirelessly advocate for their children. The context of the use of advocacy and activist measures and an overview of the literature on parent and caregiver uptake of these is discussed identifying a critical loss of political voice of persons with disabilities post-democratic attainment as well as the need to build stronger child participation fora. The study finds that while the narrative of the social and human rights model approaches to disability dominates in mission statements and objectives of disabled persons’ organizations (DPOs) and nongovernmental organizations, the services offered by some of these organizations have a definite medical slant. A brief synopsis of selected barriers that children with disabilities face, primarily in accessing their socioeconomic rights, including their right to education, health, and freedom from violence, is provided. Litigation brought by parents of children with disabilities is analyzed showing that professionals and organizations acting as curators ad litem and amicus curia, respectively, will likely continue to play an enhanced role in South Africa. Where parents and caregivers of children with disabilities are backed up by DPOs with traction in society, they are more likely to be successful in achieving their advocacy goals. Furthermore, the role of law clinics well versed in disability in representing these children, their parents, and DPOs is crucial. Recommendations for future law reform and activism is provided.