When disability and illness collide: mothering at the margins of care

When disability and terminal illness come together, care is shaped not only by medical systems but also by moral judgements, institutional priorities, and cultural beliefs. Drawing on an autoethnographic account of mothering a child with Spastic Quadriplegic Cerebral Palsy and Acute Myeloid Leukaemia in Sri Lanka, this article explores how my caregiving as a mother took place within fragmented healthcare systems and socially regulated expectations of motherhood. It shows how children with disabilities are often given lower priority, how maternal labour becomes invisible, and how grief is extended and silenced over time. By placing personal experience within scholarship on disability and motherhood, this article argues that maternal narratives from the Global South are important for understanding how care, value, and dignity are unevenly distributed. It calls for more ethically grounded and inclusive healthcare approaches that recognise lived experience as an important source of knowledge.