Contested Disability: Sickle Cell Disease

Aug 28, 2023

health and social work journal cover

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, an article in a recent issue of the journal Health & Social Work 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.

The author writes:

Social workers are one of the few healthcare workers with an explicit social justice mandate…. Along with our person-in-environment perspective, our commitment to social justice can rally human rights for people with SCD to facilitate accommodations and entitlements—essential tools that people with SCD can use to shape their lives while living with a serious and what is often an unpredictable condition…. Until structural change is made, social workers can work in alliance with people with SCD to strategically advance human rights amid disability contestation…. By championing our foundation in human rights, social workers can bring progressive policy documents, such as Ontario Health’s (2023) SCD Quality Standard, to life.

Study Author:

Sinthu Srikanthan, BA, BSW, MSW, RSW, social worker with Red Blood Cell Disorders Clinic, University Health Network, Toronto, ON, and research assistant, Youth Research and Evaluation eXchange, School of Social Work, York University.

NASW journals are co-published by NASW Press and Oxford University Press. The journal Social Work is a benefit of NASW membership. It is available online or, at a member’s request, in print. Children & Schools, Health & Social WorkSocial Work Research are available by subscription at a discounted rate for NASW members, online or in print.

Learn about NASW journals and subscriptions.