Brenna’s story

Abstract

Children with intellectual disabilities spend more time in the health-care system than mainstream children. Parents have to learn how to navigate the system by coordinating appointments, understanding the referral process, knowing what services are available, and advocating for those services. This places an incredible amount of responsibility on families. This article is one mother’s personal story and reflection about her journey through the Canadian health-care system in Nova Scotia, with her daughter who has an intellectual disability. The reflection identifies moments of tension experienced by a mother and how she was expected to be a medical system navigator, doctor–educator, time manager, and care coordinator and the roles that led to feelings of repression, extreme frustration, and fear. A final discussion offers an analysis of her experience, using concepts from feminist post-structuralism.