Discourse of needs versus discourse of rights: family caregivers responding to the sexuality of young South African adults with intellectual disability

Abstract

Although most people with intellectual disability remain under the lifelong care and support of their families, there is a hiatus in research that explores the sexuality of people with intellectual disability within the family setting. Little is known about how the responses of family caregivers align with a human rights approach to the sexuality of people with intellectual disability, particularly in the South African context. This study used a constructivist grounded theory approach to explore how 25 South African family caregivers responded to the sexuality of their young adults with intellectual disability. Findings revealed that family caregivers prioritise what they deem as being the immediate needs of themselves and the young adults, over the young adults’ rights to sexual autonomy. Practitioners, guided by the human rights approach, need to understand the individual and family context so as to better collaborate with family caregivers in supporting people with intellectual disability to realise their sexual rights. We apply two theories of needs to illuminate the conflict between needs-centred ethics and human rights approaches in a context where the family caregivers are the ones determining the sexuality needs of young adults with intellectual disability.