The RBCD Hub goes to CanHaem!
The RBCD Hub’s Sinthu Srikanthan and Vanessa Ferguson with the RBCD clinic’s site director, Dr. Kevin Kuo, at CanHaem
On September 20, 2024, the RBCD Hub’s Vanessa Ferguson and Sinthu Srikanthan were invited speakers at the Canadian HemaHemoglobinopathy Association’s (CanHaem) annual conference in Halifax, Nova Scotia. Vanessa and Sinthu spoke to healthcare workers caring for people with red blood cell disorders about the intersections of racism and disability with sickle cell disease and thalassemia.
The Talk: Disability, Racism, and the Red Blood Cell Disorders
The talk explored how red blood cell disorders, which largely impact racialized, Black, and newcomer communities in Canada, are frequently contested in society as disabilities. This is due to the fact that red blood cell disorders are often invisible disabilities. Additionally, racism, anti-Black racism, and xenophobia shape how Black, racialized, and newcomer people may be seen as undeserving of disability-related accommodations and benefits. Ultimately, this means that people with red blood cell disorders do not have access to tools that can improve quality of life in areas such as employment and school.
Persisting Questions
Medicine is often seen as “objective” – however, there are no medical tests for the disabling and hallmark symptoms of pain and fatigue in sickle cell disease and thalassemia.
With these knowledge gaps, how do racialized ideas about deservingness shape how disability is recognized (or not recognized) for people with red blood cell disorders in Canada?
What are the dangers of viewing disability – a human rights matter – exclusively through a medical lens?
How can multi-discipline teams work with people with red blood cell disorders get disability accommodations and benefits – vital tools to shape a better quality of life?
Dr. Madeline Verhovsek, Director of McMaster University’s Adult Hemoglobinopathy Program, with the RBCD Hub’s Vanessa Ferguson and Sinthu Srikanthan
About the Authors
Vanessa Ferguson is a Health Policy & Health Equity Ph.D. candidate at York University. Through her research, Vanessa aims to unveil and challenge both new and old barriers to adequate and deserved care for Black and other racialized people living with SCD.
Sinthu Srikanthan is a social worker in the Red Blood Cell Disorders Clinic at UHN. She is passionate about Anti-Racist/Anti-Oppressive practice.
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