An Identity Crisis for
Sickle Cell Disease in Brazil
The Assignation of Blackness
The Assignation of Blackness
Sickle cell disease (SCD) is a global public health problem despite its rare disease status. SCD is a genetic blood disorder of hemoglobin that damages and deforms red blood cells. Major complications include infection, anemia, organ damage, and painful crises. It is the most common genetic disorder in Brazil and throughout the world. There is no national prevalence, but it is estimated that approximately 2500 children are born every year with SCD. Regionally, SCD prevalence varies greatly. For instance, one out of 650 people have SCD in Bahia, one in 1200 have it in Rio de Janeiro, and one out of 10,000 in Rio Grande do Sul.
Historically, physicians involved in sickle cell research emphasized the racial specificity of the disease and claimed it as a marker of racial identity. As a result, SCD has been subject to cultural, social, and political patterns that complicate the biologic framing of the disease. SCD is often associated with suffering, distress, neglect, and stigma. For SCD in Brazil, it is not easy to disentangle biology from culture; however, authenticity for the disease aligns with identity markers such as Blackness. Though SCD is expressed in all races, notions of invisibility get introduced to patients who do not physically express “Black” characteristics. The questioning of diagnosis based on race persists today.
In 2006, the National Health Policy for the Black Population (NHPBP) was drafted and then approved in 2009. It was the first piece of legislation from the Ministry of Health that officially recognized Afro-Brazilians as a vulnerable population that warranted separate consideration and addressed certain inequalities in the form of racial health reparations. The committee that developed the NHPBP chose sickle cell disease (SCD) as their “flag to demand health rights” and, despite the biological basis of the disease, constructed SCD to emphasize direct ties to African ancestry and the Afro-Brazilian body. This was a strategy to capitalize on the “right to health” discourse created by the 1988 constitution. The policy addressed a number of specific diseases as well as larger social determinants of health for the Black population.
Arguments used by activists to justify the inclusion of sickle cell disease (SCD) within the NHPBP, draw a direct link between race and genetics. This linkage has long been made in the case of SCD—historically believed to only manifest itself in Africans and those of African descent and later becoming understood as a molecular disease. Many Brazilians link SCD with African inheritance and authentic alignment to African identity, particularly those in the Movimento Negro (Black Movement). Some narrators in my study (often those with darker skin) living with SCD use this linkage to African heritage to assert that certain rights are owed to them as a result of the sickle allele coming to Brazil via forced migration from Africa. Perhaps even more interesting, is the response made by the government to these claims via the NHPBP, which take the form of health reparations for those with SCD.
I define biocultural citizenship as a flexible mode of enacting belonging that varies depending on disease status, skin color, social class, recognition of African lineage, and other identifiers. It is dependent on the idea of biological and cultural difference that is co-produced by the Brazilian government and Afro-Brazilian citizens. Through the lens of SCD in Brazil, we can witness how historical social policies that legitimized cultural difference were translated for the benefit of Afro-Brazilians. This was then coupled with public health policy that recognized biological difference. The combination of both cultural and biological difference (supplied by connection to the African continent) helped to create space for those living with SCD in a dominant reality of normalized and able-bodied whiteness.
The concept of bounded justice explains the futility of the distribution of health-based rights once they were impinged upon by societal forces. There are two sides working in conjunction to produce this notion of bounded justice. On one side is a marginalized population who draw upon both the sickle gene and African heritage to make competing claims upon the State via biocultural citizenship. The other is the State, which helps, distribute programs, education, and pharmaceuticals. This relationship is facilitated by the political processes of a relatively new democracy determined to help give power to the historically powerless. In theory, these health reparations seek “to nurture the group’s self-empowerment, and thus aid in the nation’s social and cultural transformation.” In reality, the unequal and ineffective practices of the government in conjunction with the lack of experience and exposure that Afro-Brazilian citizens have in handling political power contributes to the bounded quality of the justice they are offered.