Developments in Neuroethics and Bioethics - Chapter 5: Disrupted life narratives of children in care with neurodevelopmental disabilities: Whose story is it?

Elsevier, Developments in Neuroethics and Bioethics Volume 6, 2023, Pages 121-144
Christina Tortorelli, Peter Choate, Dorothy Badry

Children with neurodevelopmental disabilities are over represented in child welfare and related systems such as mental health, justice, special education and other social services. They are often faced with a narrative of incapacity, stigma and limitation which compounds stigmas. In addition, the systems that are meant to support them, often do so in fragmented delivery operations making navigating and receiving needed services complicated and frustrating. Criteria to access services is typically inconsistent between providers using language and criteria that diminishes capacity. Racialized children also face further systemic barriers based on their social location while also representing the majority of children in care. Systems meant to support children with disabilities are systems versus client oriented which disrespect the uniqueness of the child. Often lacking is a place for the child to have voice but then must struggle to meet approval criteria which leads to the systems and those in authority modifying the story for the child. In this chapter we explore the intersections between diagnosis, stigma and labeling along with the silencing of the child's voice. We ask the question, ‘whose story is it’?