An Identity Crisis for
Sickle Cell Disease in Brazil

The Assignation of Blackness

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Overview of Brazil

RACE (Raça) | COLOR (Cor)

Some Brazilians often use color (cor) terms rather than racial ones to describe themselves. Cor includes both physical characteristics (skin color, hair type, nose shape, lip shape) and social position. The term cor captures the importance and hierarchy of physical appearance for some Brazilians, many of whom avoid the term raça (race). Despite this, racial hierarchies often rank highest the physical characteristics that most closely resemble whiteness. The Movimento Negro (Black Movement) created its own racial classification system, consisting of only two terms—branco (white) and negro (black)—as a tool for social organization. This has led to over five million Brazilians reclassifying themselves from non-black to black.

PLACE

This research took place in three major Brazilian cities: Brasília, Rio de Janeiro, and Salvador. Most federal departments are in Brasília, Brazil’s capital, including the Ministry of Health, an agency critical to the development of policies that impact sickle cell disease. Rio de Janeiro is home to many premier institutions and researchers for health sciences in Brazil, including Dr. Joice Aragão de Jesus, the then National Coordinator for the Ministry of Health’s Sickle Cell Program. Salvador, known as the metaphorical capital for Black identity, has the largest Black population and the highest incidence of sickle cell disease in all of Brazil.

HISTORY

With the abolition of slavery 1888, Brazilian elites were faced with the problem of miscegenation, preventing them from identifying as white. Thus began their journey to culturally and biologically “whiten” Brazil to separate themselves from their mixed background. This was accomplished through immigration policies that brought in many European workers.  In the 1930s, the idea of a mestiço (racially and culturally mixed) nation was popularized. In the 1940s the idea of a racial democracy was introduced to describe harmony between Brazil’s racial groups, constructing a false vision that Brazil was free of racism. After the dictatorship of 1964 – 1985 and the gradual re-opening (abertura) of the government, Afro-Brazilians began to claim citizenship through active participation in the formation of the state and demanding their rights to achieve full access to citizenship.

About Sickle cell disease

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.

Overview of policy

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.

BRAZIL-AFRICA | AFRICA-BRAZIL

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.

Belonging

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.

Voices of Community

The voices captured below are snippets of much larger interviews and speak to lived experience with SCD or narratives from within the social movement. Narrators also provided their race/color as indicated below.

Alessandra

Alessandra | Salvador, Bahia

Negra

Meus pais foram e são meu refúgio, minha fortaleza assim. A base solida que eu consegui assim tudo que eu superei de problemas, tanto com a doença, mas na vida em si. Eu sempre tive muito apoio dos dois, sempre tive muito muito mesmo o apoio e é isso que me faz mais forte.

My parents were and are my strength, the solid foundation from which I was able to overcome all the things I went through with the disease and life in general, I always a lot of their support and that’s what makes me stronger.

Altair

Altair | Salvador, Bahia

Negro

E quando a gente cria a ABADFAL—porque até então essas coisas eram no papel, na internet—quando a gente cria ABADFAL essas pessoas começam a visitar a nossa vida, a visitar a nossa casa. É aí a luta ela começa a ser mais real, porque a gente começa a ver o sofrimento, a saber do sofrimento das pessoas.

And when we created ABADFAL—because up until then, those things were on paper or the internet—those people begin to be part of our life and visit our home. From there the struggle grows because we could see the suffering of these people.

Andrea

Andrea | São Paulo, São Paulo

Branca

Mas eu acho que eu sou uma pessoa comum. Sou uma pessoa normal que trabalhou, que estudou, que casou, que teve filho, que separou, que passa por problema. Não é a falciforme que me define. Não é. A minha vida…eu esqueço as vezes que eu tenho… óbvio que não, não é que eu esqueço, mas assim, a minha vida não gira em torno disso, eu não vivo isso.

I think that I am a common person. A normal person that worked, then studied, got married, had kids, separated, has problems. Sickle cell disease doesn’t define me. I forget sometimes that I have it. My life doesn’t revolve around it, I don’t live it.

Barbara

Barbara | Rio de Janeiro - Hemorio

Preta

Claro que eu coloco bem isso, como a população negra que eu estou, que a verdadeira doença da saúde da população negra é a doença falciforme, não é a AIDS como eles colocam, eles colocam muito a AIDS mas não é. A AIDS é uma doença infecto-contagiosa. A nossa doença é hereditária, é diferente, bem diferente. Uma coisa é você contrair, outra coisa é você desender dela.

…this is something I bring up at our [sickle cell] meetings…that the true “black health” related disease is sickle cell disease, not AIDS, as they’ve made it out to be. AIDS is infectious; our disease is hereditary. It’s different. It’s one thing for you to contract [a disease], it’s another thing for you to get the disease from ancestors.

Berenice

Berenice | São Paulo, São Paulo

Preta

Que a criança poderia ser criada numa outra lógica. Que era assim, que ela tem potencial, que ela vai a aprender a superar a dor porque ela vai conviver com isso. Prolongar os periodos de bem estar, quer dizer, ela não tá o tempo inteiro doente. Ela é uma pessoa que adoece mas não é um doente. Por quanto ela tá bem ela não é doente. Ela adoece talvez com mais frequencia do que a outra população que não tem esse gene.

That the child can be raised in a different logic that’s like this: that they have potential, that they will learn to overcome pain because they will live with it. To prolong the periods of well being. In other words they aren’t sick the entire time but rather they are a person that falls ill, but they are not an ill person. Because when they are well they are not ill. They fall ill perhaps with more frequency than the other population that doesn’t have that gene.

Débora

Débora | Salvador, Bahia

Negra

Eu acho que o melhor e o maior tratamento é o cuidado, é a prevenção. Não prevenir contra anemia falciforme, não. Mas prevenir contra as dores, já que você já tem a anemia falciforme. Contra as outras dores, contra as infecções, contra as eventualidades no caso, né? Enfim, eu acho que é isso.

I think that the best and most important treatment is care and prevention. Not preventing sickle cell anemia, but preventing certain pains, infections and incidents. I think that’s it.

Elisângela

Elisângela | Belo Horizonte - Fundação Hemominas

Negra

Eu não tenho muitas lembranças boas não. Eu tive uma adolescência muito difícil porque tinha várias internações e nós não entendíamos o porque, porque eles falavam que era reumatismo no sangue, não sabiam que era anemia falciforme. Então eu não tive como estudar direito, eu vivia mais nos hospitais. E uma crise em cima de outra. Quando foi descobrida já tava 15 anos. A minha infância practicamente eu passei em hospitais.

I don’t have very good memories. I had a very difficult adolescence because I was hospitalized numerous times and we didn’t understand why because they would say it was rheumatism in the blood. They didn’t know it was sickle cell anemia. So I couldn’t go to school consistently, I would come more to the hospitals with one crisis on top of another. When they discovered it I was already 15 years old. My childhood was practically spent in hospitals.

Elvis

Elvis | Brasília, DF

Pardo

Foi muito difícil para falar a verdade. Essa falciforme eu acho que é uma doença que sempre que eu faço as minhas palestras eu falo, “A gente toma consciência da dor muito cedo”. Eu acho que quando a gente toma consciência de que a gente é ser humano, a gente já toma atraves desse dor. E isso acompanha a gente toda uma vida. Quando você pensa que é só a dor, aí vem as outras coisas. Vem as úlceras na região do tornozelo, vem o priapismo, vem a cirurgia de vesícula, vem o preconceito da sociedade em relação ao olho amarelo.

It was very difficult to have the disease. Every time I do lectures I say, “We become aware of pain very early.” I think that when we become aware of our humanity, we realize this through the pain. And that is part of life. When you think that it’s only pain, other things appear like ulcers near the ankles, priapism, vesicle surgery, prejudice from society because of our yellow eyes.

Fernanda

Fernanda | Salvador, Bahia

Parda

Eu tive muita crise. Não podia fazer educação fisíca na escola, tinha muita crise, faltava muito. Tive muita muita infecção quando quando era pequena. E quando foi para adolescência que começou a piorar um pouco a situação. Sindrome torácica. Foram algumas, muitas. Uma delas o médico falou que não tinha o que fazer. Que o pulmão tinha parado de vez. Fiquei muito tempo com o aparelho para respirar por mim. Porque não tinha o que fazer. Parou, e o médico falou, agora ela, eu não temho mais o que fazer. Sinceremente eu não acho que ela volte.

I had a lot of crises. I couldn’t do physical education at school, I missed a lot of class, I had a lot of infections when I was young. When I began my teenage years is when the situation got worse. Acute chest syndromes was one of them, I had it a lot. During one of them the doctor said that there was nothing that could be done, that one of my lungs had stopped functioning, and I had a respirator for a long time. They didn’t have anything they could do, he stopped and said there is nothing else I can do. I honestly think she is not going to make it.

Flavio

Flavio | Salvador, Bahia

Branco

Então meu pai sempre lutou por causas sociais. Bastante as causas sociais. E minha mãe também veio também nessa linha também. E eu acho por causa disso eu aprendi bastante do valor da cidadania, do valor da política, do valor de lutar não só por mim mesmo mas lutar por outros também. E eu sempre fui, no meu caso, sempre fui muito xereta em relação a minha doença. Então pesquisei muito sobre a doença, eu li muito na internet, eu conversava muito com médico, tirava muitas dúvidas. Então hoje eu tenho um conhecimento razoável do meu problema também, por causa disso também.

My father always struggled for social causes. My mom did as well. And I think because of this I learned a lot about the value of citizenship, politics and the value of fighting not just for me but for others as well. In my case, I was always curious in relation to my disease so I would do a lot of research, read a lot on the internet, would meet with doctors regarding questions. Today I have a deep understanding of my problem because of this as well.

Gilberto

Gilberto | Rio de Janeiro - Hemorio

Negro

Uma raça que é muito humilhada, sofrida, prejujicada, e injustiçada, principalmente aqui nesse país. Nesse país que a gente vive, nós negros não temos valor. Nós negros, tudo é mais difícil para a gente. E se não houvesse racismo, a portaria 1391, a portaria da doença falciforme, ela já tinha virado lei.

[Black is] a race that is often humiliated, that suffers, is judged and wronged, principally in this country. In the country where we live, we Blacks don’t have value. We Blacks, everything is more difficult for us. And if there wasn’t racism, ordinance 1391, the ordinance that supports sickle cell disease, would have already become a law.

Hamilton

Hamilton | Rio de Janeiro - Hemorio

Negro

O que não era fácil de você me dar uma falciforme, anemia falciforme, por causa patologia. Tinha ainda o problema de úlcera de perna, né, que apareceu em mim. E eu fazendo tratamento, tentando controlar da melhor maneira possível. E também, as intercorrências, ainda tinha as intercorrências nesse meio. Então ficava difícil administrar. Como você vai administrar uma faculdade presencial, tendo que administrar tudo isso. Vou ser sincero para você, foi complicado, mas eu consegui.

But it wasn’t easy because I was given a disease, sickle-cell disease, because of the pathology. I still had the issue with the leg ulcer, right, that just happened to show up. And I would treat that, trying to take care of it in the best way possible. And also the complications, I still had the complications amidst all this. So it was hard to handle it all. How do you handle an in-person college, having to handle all this. I will be honest with you, it was complicated but I managed to do it.

Henrique

Henrique | Belo Horizonte - Fundação Hemominas

Pardo

Também eu tive minhas professoras que me marcaram bastante. Eu tive três entre a primeira e terceira série. Que pelo fato de eu ficar bastante no hospital eu perdia muitas as aulas. Eu chegava e ficava um mês e meio sem ir na escola. Elas iam no hospital, elas levavam a máteria para mim. E acabaram virando amigas, né, devido a isso então consegui acompanhar bem.

Some of my teachers really made a difference, especially three teachers between the 1st and 3rd grade. Because I was sick in the hospital a lot of the time, I would miss a lot of school. Sometimes I would spend up to one and a half months in the hospital. They would come to visit me and would bring me my homework. They became my friends, because of that and I was able to stay caught up pretty well.

João

João | Salvador, Bahia

Negro

Tem que mudar várias coisas. Atendimento. Porque o atendimento é péssimo. Principalmente quando a gente chega no primeiro atendimento, quem atende são as meninas ali na recepção. Os médicos nem sabem que algumas delas atendem tão mal a gente. Porque nós às vezes é um causo de prioridade, e tem até que botar aquela pulseirinha que a gente é prioridade, mas eles não sabem que a gente é prioridade. Botas aquela pulseirinha branca, você sabe, a gente às vezes até fica lá parado. Tem que mudar muita coisa.

A lot of things need to change. Treatment and [emergency] attendance. They are bad. Especially when you arrive at the first phase of attendance, which are the girls at the reception. Doctors don’t even know that some of them treat us so badly. Sometimes there’s a case of priority, and they tell us we have to go back to the other line because this one is for priority patients but they don’t know we’re priority because we don’t have the small white bracelet so we’re standing around waiting. So we have to change a lot of things.

Joice

Joice | Rio de Janeiro, Rio de Janeiro

Raça = negra, Cor = Parda

Aí é o momento político. Eu trabalhava como lhe disse na secretaria com as políticas públicas, programa saúde da família. Eu trabalhava no departamento de saúde coletiva do departamento do Rio de Janeiro, da secretaria de estado. A onde eu era ministerio, mas eu posso trabalhar alí. Quer dizer, você pode, no SUS, trabalhar no departamento da cidade, no departamento do estado, ou lá, não tem esse problema. Eu trabalhava alí aonde todas as políticas públicas acontecem. E lá, tinha uma moça, a Yuca, que trabalhava com a gente e que tem anemia falciforme. E ela vivia com um bocado de papel, andando pela secretaria, para implantar um programa de doença falciforme.

It was a political moment. I worked in the secretariat with public policy in the family health program. I also worked in the department of collective health in the state secretariat of Rio de Janeiro. I was part of the ministry, but I was able to work here in Rio. In SUS [the governmental public health apparatus], you can work in city or state departments. I worked where all the public policies happen. And there, there was a woman, her name was Yulca, who worked with us and had sickle cell disease. And she would say that a sickle cell disease program should be implemented.

Luana

Luana | Brasília, DF

Negra

Lembro da minha infância, lembro que foi difícil. Porque tinha muitas crises porque ninguém sabia cuidar. Meus pais cuidavam de mim mas os médicos sempre diziam da idade que eu iria atingir. Então assim eu cresci ouvindo que eu ia morrer aos cinco anos. É aí cada vez que eu completava 5 anos, era mais cinco anos. Então com 10 anos, com 15 anos, com 20 anos e assim por diante.

I remember my childhood as being very difficult because I had a lot of crises because no one knew how to take care of me. My parents took care of me but the doctors always told me how old I would be when I would die. I grew up being told I would die in 5 years and every time I completed 5 years, they would add another 5–no at 10, at 15 at 20 and that’s how they kept adding on years.

Marcos

Marcos | Rio de Janeiro - Hemorio

Preto

A sangue é a vida, né? Assim, eu posso dizer até que, eu quando era menor, as transfusões de sangue foram muito importante para mim aqui. Né, porque já tive crises mesmo que eu tive que tomar transfusão de sangue só a transfusão que fez para eu ficar melhor. É muito importante para mim. Sem o sangue…é a vida, né.

Blood is life, you know? I know that when I was younger blood transfusions were really important for me. I remember having crises where I had to receive blood transfusions and they were the only way to get better. It’s so important. Without blood, there is no life.

Maria Aparecida

Maria Aparecida | Salvador, Bahia

Branca

Eu amo a minha filha muito muito muito muito, queria muito que ela fosse curada. Porque, você já viu alguém com dor? Já. Então, imagina ela com uma crise fortíssima. Semana passada ela internou, ficou 24 dias. Mas ela fala “Vó, quero morrer! Quero morrer!”

I love my daughter so so much. I wish she could be cured. Have you ever seen someone in pain? Imagine her in a strong crisis. Last week she was hospitalized and she said “grandma [she calls me grandma], I want to die!”

Maria Cândida

Maria Cândida | Salvador, Bahia

Parda

Então será que agora você entende? Qual é o sentimento de uma mãe, de um pai, de uma criança com doença falciforme que vê sofrendo, vê no hospital, vê com dor. Muitas vezes impotente, sem poder fazer nada, não ser acolher. Cê (você) acha que é pouco sofrimento, será que só quem sente e que tem a doença, será que é isso mesmo?

Do you think that now you understand? The feeling of a mother or a father of a child with sickle cell disease suffering, coming in and out of the hospital, with pain. Most of the time not knowing what to do other than accepting it. Do you think that it is only a little suffering and the only people that feel it are those who have the disease? Do you really think that’s what it is?

Maria Ines

Maria Ines | Salvador, Bahia

Negra

Porque em geral as nossas convivências da forma como o ensino estava estruturado, o pouco acesso da população negra. Nós sempre éramos poucos nos espaços a onde estávamos. Quando eu descubro que existem alguns desses poucos juntos, para mim foi o paraíso, o paraíso. Então é aí a oportunidade de estar com pessoas que estão discutindo, pensando as mesmas coisas, lendo as mesmas coisas, tendo expectativas, né, da mesma forma.

Because, in general, our gatherings, there had always been little access to education for the black population. There were always few of us in those spaces. When I discovered that those few existed in a group together, for me it was paradise. So that was where there was an opportunity to be with people that were discussing and thinking about the same things, reading the same things and having the same kinds of expectations.

Nilcea

Nilcea | São Paulo/Salvador

Negra

Tem hora que eu acho que é uma hipocrasia, não quero trabalhar em cima disso daí que é uma doença de negro. Porque se o que é de negro não é bonito, então nunca vamos ter espaço. Que se é de negro é jogar bola, e ser pagodeiro, ou ser mulata e rebolar no carnival, nós nunca vamos ter espaços. Vocês entenderam? Não. Eu tenho o meu perfil, tenho meu direito, sou Brasileira. As minhas origens são Africanas, mas eu sou uma mulher Brasileira. Sou uma mulher negra Brasileira. Tenho direito como qualquer um.

There’s a time when I think there is hypocrisy, I don’t want to work within the idea that it’s a black disease. Because if what is black isn’t beautiful, then we will never have space. If what is associated as black is playing soccer or to be a pagodeiro or a mulata dancing in carnival, we will never have spaces. Are you understanding? No, I have my profile, I have my rights, I am a Brazilian. My roots are African, but I am a woman that is Brazilian. I am a Black Brazilian woman that has rights like everyone.

 

Paulo

Paulo | Belo Horizonte - Fundação Hemominas

Moreno

Eles já não me chamavam mais, já que eu já tinha uma doença médica. A professora tipo já deixava eu no canto durante na hora da educação física. Isso era normal, eles me davam ponto de presença. Não podia correr, né, então ficava na sala da diretora.

They wouldn’t even call me since they knew my medical condition. The teacher would leave me somewhere during physical exercise classes. They would just give me the points for attendance. I couldn’t run, I just had to stay in the principal’s office.

 

Sando

Sando | Salvador, Bahia

Negro

Para mim, eu acho que me mantém cheio de esperança, entendeu? Para mim se não fosse a fé eu já tinha desistido muitas vezes. Até de viver, de lutar, de buscar uma solução para minha situação. Hoje tenho a fé como um fundamento para a minha vida e tenho hoje a associação que me auxilia também. Eu posso até ter forças com essas duas coisas que me apoiam, que eu creio que seja isso.

I think it keeps me full of hope. If it wasn’t for faith I would have given up on life so many times and on fighting to find a solution to my situation. Today faith is fundamental in my life and I am also a part of the association that saved me too. I can have strength with these two things that support me and sustain me.

Sheila

Sheila | Bela Vista, São Paulo

Negra

A escola foi muito difícil porque eu tinha muitas crises, muitas dores. E faltava muito na escola. Recebi alguns apelidos por causa da doença. Magrela, amarela, olho de coruja porque os olhos eram muito amarelados. Vampiro porque tinha que fazer transfusão. Então era muito complicado na escola. E era, a professora afastava, me deixava sozinha no canto para não atrapalhar.

School was very difficult because I had many crises and much pain, so I would miss school a lot. I got a few nicknames from the illness: skinny girl, yellow girl, owl eyes (because of my yellow eyes). Vampire, because I had to do blood transfusions. So it was really complicated at school. The teacher would leave me alone in a corner so my presence wouldn’t disturb the others.

Thais

Thais | Salvador, Bahia

Branca

Eu não aceito que a pessoa ela coloque um rótulo. Você tem uma doença de negro. Não, eu não tenho doença de negro, tenho uma doença genética. É simples, eu não tenho doença de negro. Não é preconceito. Acho preconceito você falar que você tem uma doença de negro, isso é preconceito. Não é que eu queira negar que é uma doença, porque eu sei de onde ela veio, eu sei as características dela. Mas acho preconceito você até achar como uma doença de negro como se negro fosse o motivo para isso, eu não admito isso. Então eu quero quebrar muito dessas paradigmas disso, e por isso eu comecei a escrever no blog.

I don’t accept that a person puts a label on it. You have a black disease. No I don’t have a black disease, I have a genetic disease. It’s simple. I don’t have a negro disease. It’s not prejudice. Prejudice is saying that you have a black disease. That is prejudice. It’s not that I want to deny that it’s a disease because I know where it comes from. I know its characteristics. But prejudices are when you reduce it to a black disease as if negro is a motive for it. I don’t admit that. So I really want to break those paradigms and that’s why I started writing the blog.

Tharcia

Tharcia | Sede do ABADFAL

Negra

Eu acho realmente que a gente tem que enxergar que nós somos um só. Mas enquanto nem todo mundo consegue enxergar dessa maneira a gente precisa sim de política para fazer pressão para fazer que isso aconteça. Não que eu queira fortalecer essa idéia de raça e nem que se fique um duelo entre ser branco e ser negro. Mas eu acho que ainda é necessário que muitas pessoas tenham em mente que a gente é um só para certificar assim essa questão do opressor e do oprimido.

I really think that we should see each other as one. But since not everyone sees each other like that, we need to have policies and make political pressure so that this happens. Not that I want to fortify the misconception of race, or create a fight between being white or black. It is necessary that people have in mind that we are one yet also understand the concept of oppressed and the oppressor.

Zaira

Zaira | Rio de Janeiro, Rio de Janeiro

Mulata

Ele teve a doença falciforme nos graus piores, nos graus piores. E ele conseguiu atingir, ele tinha essa inteligência dele. Quando ele faleceu, no dia de ele falecer, ele teve uma crise muito forte de dor e ficou todo amarelo. Ele morreu nos meus braços.

He had really terrible SCD. But he was really smart. When he died, he had a really really bad crisis of pain and he turned all yellow. He died in my arms.

The Color Continuum

Narrators with different skin color, from different regions across Brazil, and with different social class status, illustrate the many ways in which claims are being understood for individuals with a sickle allele. The spectrum of color in Brazil correlates with the real and perceived benefits of formal citizenry. Often the exclusion these (typically lighter-skinned) actors may feel from full membership in the SCD community is counteracted by affirmations of inclusion in other aspects of their lives. These affirmations take shape in access to healthcare and education, better employment opportunities, less societal discrimination, and upward mobility. I found the darker skinned you were the more you relied on the health policy to help legitimize you as a citizen,those who were lighter-skinned devalued the policy, not just because they didn’t see themselves in it, but because there was less of a need for it. They had access to privatized healthcare, higher education, and better occupational choices.

This color spectrum represents the respective skin colors that were captured from portrait photos I took of each narrator. To account for variation in location, lighting, and resolution a system was developed averaging the various pixels on a narrator’s face combined with the average blur tool. The final color was used to represent the facial complexion of the narrators in this project. It should be noted that though the shades vary from very dark to very light and no two narrators had the same color. This is different than the questionnaire administered to narrators that asked each their race or skin color. This survey captured only six different answers (negro, branco, preto, pardo, moreno, mulato)*. This limited variation is vastly different than the color classifications famously collected in 1976 in Brazil, which revealed 136 different colors that described the survey’s respondents. ​​The size sample of this project is much smaller, but nearly 40 years later the answers provided by my narrators may reveal the influence that the Black Movement has had on the country in how individuals define themselves racially.

* See Creary 2018 for an explanation of these color categories.

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