Race, Racism, and Sickle Cell Disease: Where it Began and Where it Ends
A genetic illness, Sickle Cell Disease (SCD) can affect anyone. It is commonly diagnosed in people of African, Hispanic-American, Middle Eastern, Indian, and Mediterranean descent. While anyone, regardless of race and ethnicity, can have SCD in Canada, the illness and its most life-threatening complications are over-represented among those who identify as Black. This includes recent immigrants from Africa and the Caribbean, second-generation Black Canadians, and multi-generational Black Canadians. Despite living in a country with a high-quality healthcare system, many Black Canadians with SCD suffer negative health outcomes. But, why is this so?
Anti-Black Racism and SCD
The answer is anti-Black racism – policies and practices that reinforce prejudice and discrimination towards Black people. In addition to SCD’s medical impacts, Black people with SCD also face widespread anti-Black racism. Consider:
Collectively, Black patients with SCD feel as if their conditions and needs are not taken seriously by doctors and emergency departments.
Black patients with SCD are often stigmatized, being subject to unfounded and racist assumptions that they are liars and drug seekers
Opioid bans in social services, make Black people with SCD feel like criminals when they are just trying to manage their illness.
Due to anti-Black racism, Black patients with SCD receive poor quality of care and are subject to worsened health outcomes. This is especially the case in wake of the COVID-19 pandemic, where Black Canadians are more exposed but less protected against COVID-19.
The links between race, anti-Black racism, and SCD are not new. The way that we understand SCD has historically been and continues to be tied to race and anti-Black racism.
A Brief History of Race, Anti-Black Racism, and SCD
Between the 18th and 17th centuries, European and American scientists advanced ‘race science’ – a pseudo science that falsely assumes that humans can be separated into unequal racial groups. Scientists used ‘race science’ – also known as scientific racism – to establish the domination of the white race and the oppression of non-white races, including those who they categorized as Black. For example, race scientists falsely linked intelligence with brain size – they used this faulty science to advance the idea that white race is superior to other races because they had larger skulls. Racism, disguised as science, was falsely accepted as truth.
In the same vein, scientists and related professions, including doctors, have used SCD to advance untrue claims about race and disease. For example, in his book, In the Blood: Sickle Cell Anemia and the Politics of Race, Professor Melbourne Tapper describes that, in the 1920s, whenever SCD was reported in white Americans, doctors rejected the diagnosis or concluded that these individuals were not truly white. Many even went as far as attempting to trace and reveal Black ancestry in white people with SCD. This was done because doctors could not accept that SCD effects white people due to pervasive scientific racism.
Professor Tapper also describes how colonial doctors used SCD to rewrite Indigenous African communities’ histories and traditions. In the 1940s, colonial doctors tested African peoples’ blood. These doctors used the appearance of SCD to erase Indigenous traditions and create false divisions that weakened well-established Indigenous histories and governance structures. In doing so, these colonial doctors misused SCD to write false colonial narratives to govern, manage, and ultimately, control Indigenous African communities.
Finally, Professor Tapper writes that, in the 1970s, the American government had great interest in managing SCD. At this time, SCD provided a site for the government to monitor and surveil African Americans and their reproductive behaviours. This initially took the form of mandatory genetic screenings for SCD, which were later institutionalized with America’s 1972’s National Sickle Cell Control Act. Drawing from ‘race science’ ideas that equate SCD with Blackness and inferiority resulted in devastating impacts, with American states engaging in discriminatory practices to deny education, employment, and insurance to people who were identified with SCD and sickle cell trait through genetic screening. Through policies that equated Blackness with SCD, the American government used SCD as a vehicle through which African Americans’ responsibilities – as it concerned their health – were reconfigured to advance the state’s interests as opposed to that of patients.
Confirmation Bias and SCD
These histories show how faulty science is built into the foundations of both medicine as well as social policy. They show how SCD became globally understood or rather, misunderstood. These histories are indicative of confirmation bias – “the tendency to search for or interpret information in a way that confirms one’s preconceptions, leading to statistical errors” – within medicine. In the case of SCD, many doctors and researchers looked for data that supports or confirms racist and unscientific conclusions rooted in scientific racism. These conclusions are based on faulty science that constructs SCD as an inherently Black disease or that Blackness and ‘Black blood’ are inherently inferior to whiteness and ‘white blood.’
Confirmation basis has deadly outcomes. As demonstrated in America, wrongfully equating SCD with Blackness led to government’s heavy surveillance of and discrimination against Black communities. At the same time, there is little attention paid towards SCD in non-Black communities. Both trends have negative implications for the health outcomes of all people with SCD, regardless of race. The implications of confirmation bias in SCD extend into the lives of people with SCD.
For SCD, ‘race science’ means that the illness is inextricably tied to race. Even though SCD is a genetic disorder and race is arbitrary and socially-determined with no biological basis, Blackness continues to characterize the disease.
Scientific racism and anti-Black racism continue to be embedded in SCD and medicine – from diagnosis, treatment, and prevention, to policies and funding for care and research. Black patients are never free from racism throughout their health care journey. As an example, care for patients with chronic kidney disease is based on the racist stereotype that all Black people have increased muscle mass – this faulty and racist assumption marginalizes Black patients in being referred for dialysis and receiving a kidney transplant.
Race and SCD in the 21st Century
Despite the impacts of anti-Black racism, healthcare practices and policies make patients with SCD feel that they contribute to their own ill-health outcomes. Neglected is the historical embeddedness of anti-Black racism in medicine, which contributes to life-threatening health outcomes for Black people with SCD.
We cannot begin to grapple with the experiences of Black people with SCD unless we have reckoned with the historical monstrosities associated with SCD, including how society, including medicine, represents and understands the illness. All health professionals must name and denounce the misuse and abuse of race in medicine and science. In the same way that inherited blood disorder affects health outcomes, racism exacerbates the health of individuals and communities.
SCD is more than just an inherited blood disorder. Throughout history, the social and political understandings and meanings of SCD have direct and serious health and social effects. This is a call for patients, friends, families, doctors, and other health professionals to understand the complex history of race, racism and SCD. It is only then that Black people with SCD can be seen and their condition be understood in its entirety.
Learn More
Curious about learning more about the links between racism, race science, and SCD? Check out the following books:
Professor Melbourne Tapper’s (1999) In the Blood: Sickle Cell Anemia and the Politics of Race
Dr. Keith Wailoo’s (2014) Dying in the City of the Blues: Sickle Cell Anemia and the Politics of Race and Health
Dr. Simon Dyson’s (2019) Sickle Cell and the Social Sciences: Health, Racism and Disablement
About the Author
Vanessa Ferguson is a Master's Student at Queen's University living with Sickle Cell Disease (SCD). Through her research, Vanessa aims to unveil and challenge both new and old barriers to adequate and deserved care that those living with SCD face, especially Black folks.
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