Contested Disability: Sickle Cell Disease

Abstract

Abstract The world’s first “molecular disease,” sickle cell disease (SCD) has captivated the medical community’s attention as a multisystem blood disorder linked to abnormalities in one molecule: hemoglobin. While the molecular model of SCD has led to advances in medical management, its reductionism obfuscates the sociopolitical dimensions of the condition, affording little attention to the racialized, gendered, classed, and disabling disparities faced by people with SCD. Consequently, SCD is frequently contested as a disability—opportunities to support people with SCD in everyday challenges escape many healthcare providers. These trends speak to the legacy of anti-Black racism in the Global North, which deeply entwines disability with racialized boundaries of citizenship and broader debates about “deservingness” of welfare. To address these gaps, this article delineates the medical and social models of disability as well as anti-Black racism to explore how social workers can embed human rights for people with SCD in everyday practice. This article is contextualized in Ontario, Canada, a province that recently launched a quality standard, Sickle Cell Disease: Care for People of All Ages.