The Racialization of Disease
Sickle Cell Disease is not just a medical phenomenon. Within the general public, and even among some medical professionals, it is often characterized as a "black disease." Many assume that black people are somehow more prone to get the disease, or even that it is possible only for black people to get it. In addition to being medically inaccurate, such stereotypes draw upon and perpetuate the myth of biological race in humans – and thereby continue our history of racial oppression.
The therapies and treatments that are available to those with Sickle Cell Disease are influenced by the racial history of the disease, including pain management. One of the most unfortunate consequences of living with sickle cell disease is frequent, often-unpredictable, and debilitating bouts of pain. And yet many physicians have been hesitant to prescribe pain medication to these patients. Why? Patients are often poor and black, and there is a harmful stereotype that they are therefore likely to become addicted to drugs. This results in much needless suffering – and suffering that might not be as prevalent had sickle cell disease not developed a reputation as a "black disease." A lack of research has led to few effective therapies, and one of the most lauded – bone marrow transplantation – carries an enormously high fatality rate. All of these problems are then further compounded by unequal access to healthcare; in the United States, black people tend to have worse health outcomes along a number of dimensions.
Perpetuation of the Ideology of Race
The racialization of Sickle Cell Disease fits into a broader societal narrative about the biological essentiality of race. It is often presumed that humans can be naturally subdivided into different races based on geographic ancestry, and that these races differ meaningfully in their susceptibility to certain diseases (as well as many other qualities). But this is, in fact, false; the notion of biological race in humans is simply not true. Although differences certainly do exist among people and populations, these differences do not rise to the level required to make racial categorizations.
In the United States (and many other places), the doctrine of biological race has long been accompanied by and used to justify an ideology of racial superiority. The neutral fact that humans are different from one another has become laden with normativity, such that "different" is often equated with "inferior."
So, we are raising awareness about Sickle Cell Disease to find more effective treatments to relieve the suffering of those affected. And in doing so, we also hope to play a part, however small, in the dismantling of the illusion of biological race.
Further Reading
For more information about the racial history of Sickle Cell Disease: Wailoo, K and Pemberton, J (2006). The troubled dream of genetic medicine: Ethnicity and Innovation in Cystic Fibrosis, Tay-Sachs and Sickle Cell Disease. Johns Hopkins University Press. pp 116-160.
For more information on the biology of human variation and its relation to the concept of race: Graves, J. L. (2015). Why the Nonexistence of Biological Races Does Not Mean the Nonexistence of Racism. American Behavioral Scientist, 0002764215588810.
For more information on the ideology of race: Nash, M. (1962). Race and the Ideology of Race. Current Anthropology, 3(3). 285-288.
Sickle Cell Disease is not just a medical phenomenon. Within the general public, and even among some medical professionals, it is often characterized as a "black disease." Many assume that black people are somehow more prone to get the disease, or even that it is possible only for black people to get it. In addition to being medically inaccurate, such stereotypes draw upon and perpetuate the myth of biological race in humans – and thereby continue our history of racial oppression.
The therapies and treatments that are available to those with Sickle Cell Disease are influenced by the racial history of the disease, including pain management. One of the most unfortunate consequences of living with sickle cell disease is frequent, often-unpredictable, and debilitating bouts of pain. And yet many physicians have been hesitant to prescribe pain medication to these patients. Why? Patients are often poor and black, and there is a harmful stereotype that they are therefore likely to become addicted to drugs. This results in much needless suffering – and suffering that might not be as prevalent had sickle cell disease not developed a reputation as a "black disease." A lack of research has led to few effective therapies, and one of the most lauded – bone marrow transplantation – carries an enormously high fatality rate. All of these problems are then further compounded by unequal access to healthcare; in the United States, black people tend to have worse health outcomes along a number of dimensions.
Perpetuation of the Ideology of Race
The racialization of Sickle Cell Disease fits into a broader societal narrative about the biological essentiality of race. It is often presumed that humans can be naturally subdivided into different races based on geographic ancestry, and that these races differ meaningfully in their susceptibility to certain diseases (as well as many other qualities). But this is, in fact, false; the notion of biological race in humans is simply not true. Although differences certainly do exist among people and populations, these differences do not rise to the level required to make racial categorizations.
In the United States (and many other places), the doctrine of biological race has long been accompanied by and used to justify an ideology of racial superiority. The neutral fact that humans are different from one another has become laden with normativity, such that "different" is often equated with "inferior."
So, we are raising awareness about Sickle Cell Disease to find more effective treatments to relieve the suffering of those affected. And in doing so, we also hope to play a part, however small, in the dismantling of the illusion of biological race.
Further Reading
For more information about the racial history of Sickle Cell Disease: Wailoo, K and Pemberton, J (2006). The troubled dream of genetic medicine: Ethnicity and Innovation in Cystic Fibrosis, Tay-Sachs and Sickle Cell Disease. Johns Hopkins University Press. pp 116-160.
For more information on the biology of human variation and its relation to the concept of race: Graves, J. L. (2015). Why the Nonexistence of Biological Races Does Not Mean the Nonexistence of Racism. American Behavioral Scientist, 0002764215588810.
For more information on the ideology of race: Nash, M. (1962). Race and the Ideology of Race. Current Anthropology, 3(3). 285-288.