Sickling in an Able-Bodied World: An Autoethnography of the Ontario Sickle Cell Health Quality Standard

Abstract

Sickle Cell Disease has very limited research from a Critical Disability lens. For example, Swanson et al. notes that there is extensive discussion of SCD from a multifactorial lens. “Disability among people with sickle cell disease, which includes physical, psychological, and social dimensions.” (Swanson, et. al p. 390). A strong disability perspective is outlined, noting: “pain is not simply the result of a biological process but is influenced by the social context.” (Swanson, et. al. p. 392). More often than not, attention is paid to the disease from a biomedical and clinical lens. My research aims to look at SCD from an embodied/lived experience perspective. Individuals living with SCD go through pain daily. They have to constantly monitor their body for pain, and to be hyper-aware of their body’s signals. The body ends up being something that a person doesn’t fully trust. Writing from an embodied experience pushes back against seeing the illness only in terms of lab values or genetics; instead, it allows us to focus on what it feels like to live with SCD in this body, in this healthcare system, in this society. To elucidate the inadequacies of the Ontario healthcare system for people living with SCD, I will engage in a critical reading of the Ontario Quality Health Standard (HQS) from the perspective of a Black Woman living with SCD, using a Black Disability Studies lens. The HQS was designed for people living with SCD to receive high-quality care when they enter an emergency room. The purpose of the document is to make recommendations for improving the care of individuals with SCD in hospitals, including “eight quality statements that address areas identified by the Sickle Cell Disease Quality Standard Advisory Committee as having high potential to improve care for people with sickle cell disease in Ontario” (Ontario Health, 2023, p. 7). SCD remains under-recognized in Canadian healthcare, and the current HQS fails to fully reflect the experiences and needs of those living with chronic conditions like SCD, especially Black Canadians who face intersecting systemic inequities, despite growing acknowledgement of the impact of anti-Black racism on healthcare for people with SCD.