Mixed Race Studies

Race, Policy, and Culture: An Identity Crisis for Sickle Cell Disease in Brazil

Melissa S. Creary, MPH, Doctoral Candidate
Graduate Institute of Liberal Arts
Emory University

Professor Howard Kushner, Chair
Professor Jeffrey Lesser, Co-Chair

Abstract of Dissertation Prospectus

In 2001, Cândida and Altair, a married couple, started a national organization to increase the rights of sickle cell patients, and thereby gave birth to the sickle cell disease (SCD) movement in Salvador, Bahia, Brazil. Cândida, the wife, who carries sickle cell trait, now heads the municipal SCD unit for Salvador. She, with light skin and wavy brown hair, might be considered white in the United States, but when I asked her why she had created the organization she responded: “Eu sou negra!” (I am black). Her darker-skinned husband, who considers himself a black activist, coordinates the national SCD association and helped craft policy for SCD. As a family, Cândida and Altair shift between multiple roles: genetic carrier, parent, government official, and SCD advocate. Together these two activists have helped shape the racial discourse on SCD by associating the disease with “blackness” on the individual, organizational, and national level.

Sickle cell disease is the most common hereditary hematologic disorder in Brazil and throughout the world. In Brazil, the estimated prevalence is between 2% and 8% of the population. My research explores how patients, non-governmental organizations, and the Brazilian government, at state and federal levels, have contributed to the discourse of SCD as a “black” disease, despite a prevailing cultural ideology of racial mixture. Specifically, this project analyzes how the Brazilian state, advocacy, and patient communities within the nation have, at times, branded SCD an Afro-Brazilian disease. At the state level, I’ll describe the reigning racial ideology and how the development of racialized health policy contests their own viewpoint. On the organizational level, I’ll investigate the alignment of the SCD movement with the black movement of Brazil and the decisions made by some of these organizations to influence health policy using anti-racist motives. Lastly, I will explore the actual embodiment of SCD in the patient population and the “identity crisis” many may experience upon being diagnosed with a “black” disease.

With this framework in mind, I aim to answer the question—How are different actors (re)defining race and health through culture, biology, policy and politics in contemporary Brazil? This multi-level identity crisis is in constant contestation of competing racial frameworks at the micro, meso, and macro level. I will manage these complexities with a flexible notion of biological citizenship that considers frameworks of biology, social determinants, and policy in ways that is uniquely responsive to the cultural and historical specifics of how race, identity, health, and legitimacy operate in Brazil.

To do this, I will spend ten months in Brasília, Salvador, and Rio de Janeiro investigating the construction of sickle cell disease on three different levels: advocacy organization around patient rights, individual patient and family experience, and governmental policy development and implementation. To assess the social, geographical, and political context of my subjects, I will use a series of historical and qualitative methodologies.

My work will deepen and re-think narratives of Brazil’s racial history through the lens of SCD. It also stands to generate a better understanding of the historical genealogy as it informs the current implementation of SCD policy. This analysis can provide lessons to both Brazil and the US on how future policy can be designed. Specifically, whether policy developed around populations (or sub-set of populations) can be measured against and be as effective as policy developed around disease.

Also by Mail

Edition Assemblage: Begleiterscheinungen emanzipatorischer Theorie und Praxis
2013-02-20
96 pages
Paperback, 142×205 mm
ISBN 978-3-942885-38-6
Series: Witnessed Edition 2

Olumide Popoola

Also by Mail is a modern family comedy-drama that follows the experiences of Nigerian German siblings Funke and Wale who fly to Nigeria to bury their suddenly deceased father. Their upbringing clashes with their uncle’s expectations and initial misunderstandings soon come to an éclat. When Wale returns to Germany, frustrated, he is bitterly reminded of how little his father acknowledged and prepared them for racist encounters there.

Loss and racism, sibling rivalry and cross-cultural etiquette, the play incorporates and subverses it’s urban, neo-African elements of story-telling to give a contemporary picture of a family that struggles not only with the legacy of its patriarch but with being racialized within the German context as well. Where does each stand in a circle of relations and needs? Where does each want to end up? And who is willing to help? It takes an inside-outside job to lighten the mood and the surprise startles them all.

Researching ethnicity, identity and ‘mixed-race’

Social Science Research: Discussing Methods and Resources
The British Library
2012-11-19

This post discusses our latest Myths and Realities event on ethnicity, identity and ‘mixed-race’ and points readers in the direction of some relevant British Library collections.

On the evening of 13 November we hosted our latest Myths and Realities event (in partnership with the Academy of Social Science) on ‘Our ethnicity and identity – what does it all mean?’ Speakers Professor Miri Song and Professor Ann Phoenix spoke about how we think about our ethnic identity, and how the meanings we attach to this identity can change across time, space and social context. The event was chaired by Rania Hafez of Muslim Women in Education.

Ann Phoenix’s talk entitled ‘Why are ‘race’ and ethnicity crucial to identities and social lives, but not central?’ explored how debates about multiculturalism have produced contradictory ways of thinking about ‘race’, ethnicity and identities. Miri Song’s title was ‘Does the growth of ‘mixed race’ people signal the declining significance of ‘race’?’. Here she examined what is signalled by the growth in interracial partnerships and of ‘mixed’ people…

Read the entire article here.

Engendering Racial Perceptions: An Intersectional Analysis of How Social Status Shapes Race

Gender & Society
Published online before print: 2013-04-12
DOI: 10.1177/0891243213480262

Andrew M. Penner, Associate Professor of Sociology
University of California, Irvine

Aliya Saperstein, Assistant Professor of Sociology
Stanford University

Intersectionality emphasizes that race, class, and gender distinctions are inextricably intertwined, but fully interrogating the co-constitution of these axes of stratification has proven difficult to implement in large-scale quantitative analyses. We address this gap by exploring gender differences in how social status shapes race in the United States. Building on previous research showing that changes in the racial classifications of others are influenced by social status, we use longitudinal data to examine how differences in social class position might affect racial classification differently for women and men. In doing so, we provide further support for the claim that race, class, and gender are not independent axes of stratification; rather they intersect, creating dynamic feedback loops that maintain the complex structure of social inequality in the United States.

Read or purchase the article here.

Dimensions Variable: Multiracial Identity

RUSH Arts Gallery
526 West 26th St, #311
New York, New York
Phone: 212-691-9552
2013-04-04 through 2013-05-10

Opening Reception: Thursday, 2013-04-04, 18:00-20:00 EDT (Local Time)
Artist Talk: Saturday, 2013-05-04, 16:00-18:00 EDT (Local Time)

Firelei Báez, Yael Ben-Zion, Cecile Chong, Dennis Redmoon Darkeem, Nicky Enright, Lorra Jackson, Sara Jimenez, and Saya Woolfalk

Curated by Gabriel de Guzman

The 2010 census shows a 32 percent increase since 2000 of Americans who identify themselves as belonging to a multiracial background. They represent the growing multiracial diversity that has become more evident in our country and in our communities during the Obama era. Dimensions Variable: Multiracial Identity features artists whose work expresses various aspects of their diverse, yet highly individual backgrounds. The exhibition attempts to move beyond the polarized discussions of race and identity politics of the 1980s and 90s and past the limitations imposed by political correctness. It also contests the idea of a “post-racial” society presented by political commentators after the election of Barack Obama. In the four years since the biracial president’s first inauguration, race has remained a critical and contentious topic in national politics. Challenging a monolithic view of race, this exhibition examines contemporary issues of identity, hybridism, and racial ambiguity. At times the artists in the show directly tackle issues that relate to race and cultural awareness. At other times, the artists deal with these issues subtly by acknowledging the spread of multiculturalism in our global society and the ways in which race and ethnicity are fluid and dependent upon perception and context…

Read the entire announcement here.

‘Improving’ the Māori: Counting the Ideology of Intermarriage

New Zealand Journal of History
Volume 34, Number 1 (2000)
pages 80-97

Kate Riddell
Waitangi Tribunal, Wellington

IN 1996 THE CENSUS gave a total of 3,681,546 New Zealanders, of whom 524,031 were self-described as Māori or of Māori descent — thus, around 14%. The 1896 census gave 743,214 New Zealanders, and of that figure only 39,854 were described by the enumerators as Māori — around 5%. The closest thing to the category ‘of Māori descent’ in that census was the 5,762 ‘half-castes‘ described either as living as Pākehā or Māori. The New Zealand population in 1769 has been estimated as perhaps 100,000, and was 100% Māori.

These figures expose vast changes in the Māori population in size and compilation, from 100% of the population to a nadir of 5%, and back to an increasingly significant percentage of the overall New Zealand population at the close of the twentieth century. But the figures alone tell a small part of the revival of a supposedly ‘dying race’. This article explores the ideology of the censuses and the enumerators who contributed to them. At the core of this investigation is a belief that the prevalence of intermarriage between Māori and Pākehā directly affected popular views of whether or not the Māori population would survive the experiment of contact.

In 1896, with the Māori population at around 5% of the total population (and thought to be dropping), many did not believe that Māori would survive. That belief, however, flew directly in the face of much contemporary evidence to the contrary. Perhaps in one aspect, however, it was not so very wrong. Even some of the most ardent ‘fatal impact’ protagonists allowed that intermarriage with Pākehā would slow the extinction of the Māori. Others, perhaps best characterized as ‘assimilationists’, promoted intermarriage as the tool to save the Māori from themselves. To such people, the ‘half-caste’ product of intermarriage would improve the Māori ‘race’, both in terms of their statistical significance and as a people — rather like European husbandry would improve the land.

‘Half-caste’ is a problematic term. In New Zealand it has been used to describe both cultural and physical forms of the fruits of intermarriage. But it has almost never been used in a strictly biological sense. Once contact between Māori and Pākehā became widespread, ‘half-caste’ was never either a legal definition or a precise term for measuring blood-mixture. This is in direct contrast with strict legal and biological definitions in other New World colonies. In the censuses, the term came to be closely linked with the idea of ‘improving’ the Māori, like the land, by degrees. Intermarriage and the production of half-castes became synonymous with clearing away the native and planting the introduced…

…The Māori censuses to 1921 will be explored through three related myths. The myths are not easily separated, but each has some distinctive features. The first is an ambiguous one: the idea that Māori were better off either in close contact with or in isolation from Europeans. This myth expressed the belief that Māori were dying whether in close contact with Europeans or not, but that some factors could temporarily ameliorate or limit the effects of that contact. The second myth was that Māori were not worthy possessors of their own land. If they did not use it as Pākehā believed land was ordained to be used, then Māori would lose it. In this view, ‘improving’ the land and ‘improving’ the Māori went hand in hand. The third myth was that ‘half-castes’, the physical product of Māori and Pākehā intermarriage, were the only possible future for Māori (if Māori were to have a future at all). This explanation will be followed by a discussion of how the myths remained intact, despite the numerical evidence of the censuses to the contrary, and despite Māori opposition to the ideology of assimilation through intermarriage…

Read the entire article here.

Family and Community History of the Winton Triangle

Research at the National Archives & Beyond
BlogTalk Radio
2013-04-22, 21:00-22:00 EDT (2013-04-23, 01:00-02:00Z)

Bernice Bennett, Host

Marvin T. Jones, Executive Director
Chowan Discovery Group

From Family History to Community History—the Chowan Discovery Group Story with Marvin T. Jones, Executive Director of the Chowan Discovery Group (CDG).

The mission of the Chowan Discovery Group  is to research, document, preserve and present the 400+ year-old history of the landowning tri-racial people of color of the Winton Triangle, an area centered in Hertford County, North Carolina.

Founded in 2007, the Chowan Discovery Group (http://www.chowandiscovery.org/)  co-produced in 2009 its first major presentation, a stage production, scripted by Jones, called The Winton Triangle.  The book, Carolina Genesis: Beyond the Color Line, features Jones’ summary of the Triangle’s history.

In addition to writing articles, Jones has made numerous presentations about the Winton Triangle’s history on national and regional radio, at colleges and universities, museums and to civic groups. The North Carolina Office of Archives and History accepted four of his nominations for highway historical markers.

A native of Cofield, a village in the Winton Triangle, Marvin Jones began this project a decade ago by scanning the photograph collection of relatives and neighbors.  The Winton Triangle digital collection now has over 7,000 files of photographs, documents, maps, audio and video recordings.

Jones is the owner of Marvin T. Jones & Associates, a professional photography company in Washington, DC.  He has  published in well-known magazines and has worked in South America, the Caribbean and Africa.  Howard University and Roanoke-Chowan Community College hosted Jones’ exhibit on Somalia.

For more information, click here.

This, That, Both, Neither: The Badging Of Biracial Identity In Young Adult Realism

The Journal of Research on Libraries and Young Adults
The official research journal of the Young Adult Library Services Association
2013-04-22

Sarah Hannah Gómez, Graduate Student
School of Library and Information Science
Simmons College, Boston, Massachusetts

Editor’s Note: “This, That, Both, Neither” was accepted for the peer reviewed paper session at YALSA’s third annual Young Adult Literature Symposium held November 2-4, 2012 in St. Louis. The theme of the conference was “Hit me with the next big thing.”

Only in the lifetime of the Millennial generation has it become legally acceptable to mark more than one race on a federal form. In the 2010 Census, 2.9 percent of respondents indicated that they were two or more races, with even more assigning themselves other designations that speak to the many types of multiracial identities common today. As this population grows in real life, it also flourishes in young adult literature, where ever more protagonists identify with more than one racial or ethnic group and must decide how to assert themselves and what to call themselves. This paper explores some of these novels and tracks each character’s progress towards creating a “badge” of identity.

Introduction

Every year when I was a student, my school district held awards ceremonies to honor distinguished students of color from all grade levels. There was an African American ceremony, a Hispanic ceremony, and presumably an Asian American and Native American one as well. High-achieving students were invited to their respective ceremonies as well as any students of color, although I’m not entirely sure. I didn’t even know the awards existed until seventh grade, when two girls in my homeroom asked me why I hadn’t been at the African American ceremony the evening before.

I hadn’t been invited.

“Oh.” It hit me. “The district has me down as white.”

If you’d been looking at me when I said that, you would be confused. I don’t exactly look like a character in a Nella Larsen novel. But it wasn’t a lie. I am white. I’m also black. And I’m adopted, so I also share a second mixed identity with my sister, one in which we are ethnically Jewish and Latina.

My mother knew that her children were mixed, and she wanted us to have the advantage of going to a diverse magnet elementary school, so when we started kindergarten, she checked the box marked “white.” This was the late 1980s and early 1990s, when you were only allowed to be one race. And so, without having to lie, my mother helped me and my sister pass as white—at least on paper…

…I share this story not because I’m writing my autobiography, but because this is an experience shared by other mixed-race individuals, an increasingly larger part of the young American population. These teens, I believe, are the future of young adult (YA) literature. For fifteen years now, Americans have been able to officially identify as mixed. As people who identify as mixed-race begin to publish novels that tell their stories, it seems natural that their fictional worlds will represent the worlds they see around them. As Michele Elam notes, “the census box represents the new nonviolent resistance, a finger in the eye of the racial status quo,”  and we all know YA literature to be about testing boundaries and making bold statements…

Read the entire article here.

Becoming Mexipino: A Book Event with Rudy Guevarra Jr.

California State University, Fullerton
Langsdorf Hall 402 (Map)
Thursday, 2013-04-25, 16:00-17:30 PDT (Local Time)

Rudy Guevarra, Jr., Assistant Professor, Asian Pacific American Studies, School of Social Transformation, College of Liberal Arts and Sciences
Arizona State University, Tempe

Becoming Mexipino is a social-historical interpretation of two ethnic groups, one Mexican, the other Filipino, whose paths led both groups to San Diego, California from 1900-1965. Rudy Guevarra Jr. traces their earliest interactions under Spanish colonialism, when they did not strongly identify as Mexican or Filipino, to illustrate how these historical ties and cultural bonds laid the foundation for what would become close interethnic relationships and communities in twentieth-century San Diego as well as in other locales throughout California and the Pacific West Coast.

This event is sponsored by the Department of African American Studies and Humanities & Social Sciences. For more information, please contact Dr. Edward Robinson.

Issue Brief – Race and Ethnicity Matters: Concepts and Challenges of Racial and Ethnic Classifications in Public Health

The Connecticut Health Disparities Project
Connecticut Department of Public Health
Hartford, Connecticut
Fall 2007

Alison Stratton, PhD

Ava Nepaul, MA

Margaret Hynes, PhD, MPH

Race, Ethnicity and Health Disparities: An Introduction

Extraordinary improvements in the health of all Americans have been made since the early 20th century. However, not everyone benefits equally from these advances in the public’s health. Nor is every group equally burdened by the leading causes of death, which in the United States today are no longer infectious diseases, but rather chronic diseases such as heart disease, cancer, stroke, and diabetes.

“Health disparities”—those avoidable differences in health among specific population groups that result from cumulative social disadvantages (Stratton, Hynes, and Nepaul 2007)—exist for many minority populations in the United States. As used here, “minorities” are those populations in a society that are in a position of cultural and political non-dominance and disadvantage. As a result, they may experience reduced healthcare quality and access, and increased rates of disease, disability, and death compared to the overall U.S. population. For example, U.S. minority populations might include racial and ethnic minorities, limited English proficiency populations, people living in poverty, and homeless persons.

The Connecticut Health Disparities Project at the Department of Public Health (DPH), in conjunction with other agencies and programs, is taking a new look at health disparities and the collection of “race” and “ethnicity” data. Differential treatment of people based on the ideas of race and ethnicity is a social reality for all Americans (Nepaul, Hynes and Stratton 2007) and has a large impact on Americans’ health and general well-being. In order to track the health impact of these ideas of race and ethnicity, health departments at all levels need to collect consistent and comprehensive health information using racial and ethnic classification tools.

However, race and ethnicity data alone are not sufficient to accurately depict health disparities (Nepaul, Hynes and Stratton 2007). In fact, social structural factors (such as poverty, [low income environments, socioeconomic status and social supports) are equally if not more important as fundamental causes of health disparities (Link and Phelan 1995).

In this Issue Brief, then, we seek to address these questions: How have people defined and used the concepts of “race,” and “ethnicity?” How useful or consistent is our current collection of racial and ethnic data in the effort to reduce and eliminate health disparities? What other factors have an impact on people’s health? Below we: 1) introduce the history, theoretical foundations, and uses of the ideas of “race” and ethnicity” in public health data collection; 2) discuss why they are difficult, yet necessary, concepts to use in studying health in the United States; and 3) stress the need for inclusion of socio-economic and other demographic factors in the collection and analysis of health data to more fully illuminate health disparities…

…Race and ethnicity are neither scientifically reliable nor valid categories, and assignments to racial or ethnic categories are often based on observer biases, changing situational identities, and historical-political vagaries (Lee 1993; Kaplan and Bennett 2003; Williams 2007). In real life, people do not have only one fixed racial or ethnic identity which remains the same over time and space and that can be accurately measured. A further complication inherent in categorization is that people embrace biracial, multiracial, and multi-ethnic identities, which makes the categories even more difficult to sustain, compare, and enumerate. Current racial and ethnic categories for federal data collection are not sensitive to the complex intra-group heterogeneity that exists in the nation (Kaplan and Bennett 2003; Office of Management and Budget 1997).

Despite such inconsistencies in use and logic, the ideology of race is deeply ingrained in American culture. People acting on these beliefs and practices create a social reality for themselves and others based in part on these perceived racial or ethnic differences between people. This reality includes the structures, beliefs and practices of health care, medicine and economics that contribute to health disparities for minority populations (Williams, Lavizzo-Mourey and Warren 1994)…

Read the entire report here.