Acessibilidade / Reportar erro

Time, DNA and documents in family reckonings1 1 Aside from the many colleagues (most of whom are cited in this article) who have somehow contributed to this article, I would like to thank my anonymous reviewers for their invaluable provocations.

Abstracts

In this paper, drawing on literature from both STS and the anthropology of kinship, we describe a political movement aimed at legal reparation for human rights violations perpetrated by the Brazilian government against children of the compulsorily institutionalized patients of Hansen's disease. We conduct our investigation by exploring the action of intertwining technologies -- narrated recollections, written documents, and the DNA test -- employed by major actors to "reckon" the family connections at the core of this drama. The notion of technologies helps underline not only the materiality of certain processes, but also the complex temporalities at play. Responding to a challenge proposed by Janet Carsten, our ultimate aim is to show how political events as well as collective institutionalized structures - operating through the mediation of these diverse technologies - produce a particular kind of sociality, interwoven with perceptions of family and community.

kinship; temporality; human rights; DNA; Hansen's disease


Neste artigo, com inspiração tanto nos estudos da ciência quanto na antropologia do parentesco, descrevemos um movimento político que exige do governo brasileiro reparação legal pela violação dos direitos humanos dos filhos de pessoas compulsoriamente internadas por causa da Hanseníase. Realizamos essa investigação através do exame de três tecnologias interconectadas - narrativas orais, documentos escritos e o teste de DNA - usadas pelos atores principais para "calcular" as conexões familiares no cerne desse drama. A noção de tecnologias permite destacar não só a materialidade de certos processos, mas também as temporalidades complexas em jogo. Ao responder a um desafio lançado por Janet Carsten, nosso objetivo último é demostrar como eventos políticos assim como estruturas institucionalizadas coletivas - mediadas por essas diversas tecnologias - produzem um tipo particular de socialidade, enredada em percepções novas de família e comunidade.

parentesco; temporalidade; direitos humanos; DNA; Hanseníase


December, 2012. Around 60 people have made their way in the late afternoon dusk to the neighborhood association of Marituba, a satellite city of Belem de Pará. In this part of Brazil, at the mouth of the Amazon river, the heat is intense. A few women set up a table with refreshments at the back of the room while newcomers mingle, waiting for the meetingto begin. Many people come from nearby, arriving on foot with their children in tow. Others have driven all night to be here, responding to telephone and internet convocations. Their common aim: to hear more about possible reparations for the state's violation of their human rights.

Thanks to tireless political campaigning by the social movement MORHAN (Movimento pela Reintegração de Atingidos de Hanseníase 2 2 Movement for the Reintegration of those affected by Hansen's disease. ), the older members of the audience - those who were forcibly confined in Brazil's last-century lepers' colonies -- have received official apologies from the government as well as financial reparation in the form of a lifetime pension. Since then, efforts have been channeled toward the cause of the patients' sons and daughters - those "orphans of living parents" whose destinies, it is argued, have been permanently stunted by the traumatic experience of forced separation from their mother and/or father. A bill designed to concede financial compensation to this second generation of victims is rumored to be arriving in congress any day now. There is thus an air of anticipation at the meeting, as people seek ammunition to achieve the recognition and benefits they hope the federal government will grant in the very near future.

Today's guest of honor is a geneticist from the Federal University of Rio Grande do Sul. Her supervisor has volunteered the team's services free-of-charge to help prove the genealogical connections necessary for the "separated children" to press their claims. The young woman explains in clear detail the test's basic genetic logic, how the material will be collected (through saliva samples) and who exactly will need it. Those with national ID cardsthat show the proper names of both mother and father can dispense of her services. Their kinship tie has already been legally established. It is others - those who have no ID, or those who were falsely registered as the biological offspring of their adoptive parents -- who will need a test, provided they find a living parent or sibling with whom to match their DNA.

After a few seconds of low murmurs from the audience, a fiftyish gentleman, visibly frustrated, stands up to pose his question: "My father was a patient in the colony for years. My ID shows I'm his son. You mean I won't get a test?" The geneticist explains with great patience that there is no need. His identity has already been legally confirmed: "No one can take that [identity] away from you". The man's consternation appears to mirror that of others in the audience who were also expecting to spit into the plastic vials readied for tests. Spurred on by the intent gaze of those around him, he persists: "My sister and I have driven hours to be here. We know this test is important. How can we be sure that, in a couple of years, documents will be worth anything? I'm thinking that in the future the only valid proof of identification will be the DNA test."

This scene, as others evoked in this article, are based largely on field research conducted between 2012 and 2014, consisting in the perusal of documental archives, brief ethnographic incursions in two ex-colonies, and interviews with ex-internees and their sons and daughters in the states of Pará and Rio Grande do Sul3 3 GlauciaMaricato, a student of postgraduate studies in Anthropology at the Federal University of Rio Grande do Sul (see Maricato 2013, 2014), has been a close collaborator in all phases of this work. . In this initial phase of research, I have worked hand in hand with a team of geneticists from Rio Grande do Sul as well as the social movement, MORHAN, both described in greater detail below.

My original research aim was to explore the "agency" of the DNA test as a prominent actor in a network that links political aims for the reparation of human rights violations with personal subjectivities and family relations. However, inspired byconcerns such as those voiced by the man cited above, I found it necessary to make a few adjustments to my plan. The man's anxiety underlined the fact that things change. Granted, the production of knowledge about the past affects people's present and future. However, what one considers "proof" of past events may well be reframed by new (and future) technologies. Hence, yet another element was introduced into my analysis: temporality.

The link between politics, time, and family relations has been a theme of anthropologists ever since Evans-Pritchard put the highly malleable Nuer genealogies on our map. Yet, althoughour Britannic forefather saw kinship as inseparable from political structures, J. Carsten (2007)____. 2007. Ghosts of memory: essays on remembrance and relatedness. Oxford: Blackwell Pbs. comments how, in recent times, research has tended to follow two divergent paths. Anthropological analysis of kinship, focused largely on the lived experience of relatedness, has consistently sidestepped the political dimension of these processes. On the other hand, analysts interested in political issues may well focus on memory (for example, of the Argentine dictatorship orthe Holocaust), while side-lining the question of kinship and family relations.Searching for a point of convergence between these two approaches, Carsten proposes a sort of analysis that would focus on the way personal and family memoriesinteract with large-scale political events as well as collective institutionalized structures to produce kinship as "a particular kind of sociality in which certain forms of temporality and memory-making, and certain dispositions toward the past, present, and future are made possible"(Ibid 2007: 5). I propose to embrace this approach, however, with one minor reservation.

The notion of memory, notwithstanding its recent comeback among anthropologists is an unwieldy analytical tool. As Berliner (2005: 201)BERLINER, David. 2005. "The abuses of memory: reflections on the memory boom in anthropology". Anthropological Quarterly, 78(1): 197-211. reminds us, many scholarly articles use "memory" to stand in for cultural continuity, society's ability to reproduce itself, a "'past' transmitted and stored (like in a computer without meaning remembering)". I would identify, rather,with another strand of scholarship focused on the phenomenological dynamics of lived recollections involving the eminently intersubjective processes of registering, retaining and revisiting experiences of the past. The inspiring articles in Carsten's Ghosts of Memory (2007)____. 2007. Ghosts of memory: essays on remembrance and relatedness. Oxford: Blackwell Pbs. contribute greatly to the sort of de-objectivation of memory (as well as kinship) that interests us. Yet, although the ethnographies are full of rich descriptionof mnemonic devices (photos, tapestries) as well as institutional presences that encourage or inhibit the transmission of knowledge, remembrance still appears as an "internal" process centered in the subject (whether an individual, a personage or a psychological self).

The question voiced by the man at the meeting urges us to follow a slightly different approach. His concern underlines the fact that personal identity is tied up with institutional forms of recognition: "valid proof" emerges as part of a system of concrete technologies that mediate (measure and calculate) what people know and feel. In this sense, people's recollections, momentarily fixed through photos, letters or oral narratives, are one technological device, alongside others -- written records, legal documents, and the DNA exam -- that co-produce ways of reckoning personal identity and family ties. Here, neither memory nor the subject can be taken as an a-priori given,remembrance is seen as an action that is constantly "overtaken" by variousagencies, de-centeringthe possibility of any one actor (Jasanoff 2004_________. (org.). 2004. States of knowledge: the co-production of science and social order. London and New York: Routledge., Latour 2005LATOUR, Bruno. 2005. Reassembling the social: an introduction to actor-network-theory. Oxford: Oxford University Press.).It is with these concerns in minds that, in this article, I speak of reckoning instead of memory.

"Reckoning", a term found in anthropological analyses on time, ethnic identity, and family belonging, has proven to be highly useful for operationalizing my research concerns. As a gerund, it draws attention to an ongoing, eternally-incomplete process. As a substantive, it is easily pluralized, underlining multiple and heterogeneous modescharacterized by possible power asymmetries (Gingrich, Ochs, and Swedlund 2002GINGRICH, Andre; OCHS, Elinor and SWEDLUND, Alan. 2002. "Repertoires of timekeeping in anthropology". Current Anthropology, 43: S3-S4, supplement August-October.). What makes the term particularly interesting, however, is the way, through multiple and often ambiguous meanings (calculation, accounting, retribution), it combines instrumental with moral connotations.

On the one hand, we learn how calculations are seldom void of political and moral implications. Strong and Van Winkle (1996)STRONG, Pauline Turner and VAN WINKLE, Barrik. 1996. "'Indian blood': reflections on the reckoning and refiguring of native north American identity". Cultural Anthropology, 11(4): 547-576., for example, show how efforts to "reckon"an individual's quantum of Indian bloodin the context of late twentieth century North America involve the tenseinterplay between government policies, tribal bids for collective rights and individual strategies. On the other hand, in scholarly papers on the atrocities of war and dictatorships (Stern 2010STERN, Steve J. 2010. Reckoning with Pinochet: the memory question in democratic Chile, 1989-2006. Durham: Duke University Press., Atencio 2014ATENCIO, Rebecca. 2014. Memory's turn: reckoning with dictatorship in Brazil (Critical Human Rights). Madison: University of Wisconsin Press.), we are reminded how"reckoning" also evokes a sort of collective coming to terms with facts people are not anxious to remember4 4 It is used, for example, to criticize Amnesty Laws that decree what is deemed by many a premature closure to debates on state-perpetrated atrocities. . Diane Nelson (2010)NELSON, Diane. 2010."Reckoning the aftermath of war in Guatemala". Anthropological Theory,10(1-2): 87-95. explores the various facets of "reckoning" in her provocative analysis on the aftermath of war in Guatemala. Her description of how the dead are counted weaves into a depiction of how compensations are calculated, showing the ironies of the diverse forms of reckoning that converge toward the production of a sort of final judgment on the morally ambiguous events of the past. "Reckoning", in this case, is pregnant with the promise of a biblical sort of "Day of Reckoning" -- truth uniting with virtue to guarantee a just retribution for all.

As we shall see in the case of the Brazilians affected by Hansen's disease on whom we focus, it is this combination of rough materiality with subtle morality that makes the term "reckoning" soanalytically rich.

Politics and family in the social studies of science

Curiously, I found in science studiesa divide somewhat similar to that described by Carsten - between the political uses of DNA and the consequences of this technology for personal subjetivities and family relations. On the one hand, there has been no little academic discussion on the use of DNA as a technology of government for the legal identification of individuals in paternity suits (Machado and Silva 2012MACHADO, Helena; SILVA, S. (orgs.). 2012. Testes de paternidade: ciência, ética e sociedade. Lisboa: Edições Húmus., Rothstein et al. 2005ROTHSTEIN, Mark; MURRAY, Thomas; KAEBNICK, Gregory & MAJUMDER, Mary A. (orgs.). 2005. Genetic ties and the family: the impact of paternity testing on parents and children. Baltimore: John Hopkins Press., Fonseca 2014________. 2014. Parentesco, tecnologia e lei na era do DNA. Rio de Janeiro: Editora da UERJ.) or criminal investigations (Machado and Moniz 2014MACHADO, Helena; MONIZ, Helena. 2014. Bases de dados genéticos forenses tecnologias de controlo e ordem social. Coimbra: Coimbra Editora., Fonseca 2012__________. 2012. "Mediações, tipos e configurações: reflexões em torno do uso da tecnologia DNA para identificação criminal". Anuário Antropológico, 2012(1): 9-33.). Furthermore, a modest number of studies exist on the uses of DNA in collective or human rights claims. Hopeful speculation around musteringproof of genetic ancestry to validate various minority rights claims (affirmative action in the areas of education, employment, and territorial rights) may have had, as yet, little relevance in the courts (Kent 2011KENT, Michael. 2011. "A importância de ser uro: movimentos indígenas, políticas de identidade e pesquisa genética nos Andes peruanos". Horizontes Antropológicos, 17(35): 297-324.). [In Brazil, it has servedmore often than not to argue against such claims(Santos and Maio 2005SANTOS, Ricardo Ventura and MAIO, Marcos Chor. 2004. "Race, genomics, identities and politics in contemporary Brazil". Critique of Anthropology, 24: 347-378.)]. Nonetheless, working with the victims of mass killings, forensic anthropologists have gained considerable reputation in the fight for recognition of human rights violations in Chile, Colombia, and Guatemala, among other sites (see Penchaszadeh 2012PENCHASZADEH, Victor. 2012. Genética y derechos humanos: encuentros y desencuentros. Buenos Aires: Paidós.). In these various studies, although the political implications of DNA technologies are made quite clear, there has been little effort to investigate how these technologies may have reconfigured notions of time, personal identity and family relations among the people concerned. (The outstanding exception to this rule -- the use of DNA tests to "restitute the stolen identity" of children kidnapped during the military dictatorship -- will be addressed further on.).

On the other hand, medical anthropologists have done a brilliant job of analyzing the repercussions of genetic medicine for personal and family identity while touching only lightly on political elements. Finkler (2005)FINKLER, Kaja. 2005. "Family, kinship, memory and temporality in the age of the new genetics". Social Science & Medicine, 61: 1059-1071,for example, in her study on North Americansconcerned with a form of hereditary colon cancer in their families, speaks of "the ideology of genetic inheritance". According to this author, the development of information on gene-connected disease has led many people not only to delve more carefully into their genealogical past (asking "where did I get this gene"?), but also to reconfigure their perception of significant others ("who else has it?"). At the same time, the fear of passing on mortal ailments to future generations has made people think hard about screening techniques and procreative choices ("what legacy do I wish to leave?"). Finkler thus argues convincingly that DNA technology implies a sort of time-space compression that may "stand in for the past and forecast the future", serving as "proxy for memory", and leading to new forms of sociability:

Ironically, when confronted by affliction the solitary,independent, and autonomous individual of the 21stcentury is becomingunified with people with whom heor she may only share asocial and amoral DNA. Theindividual can enjoy kinship and family relations, anddevelop new curiosities about past ancestors andunknown relatives with only limited obligation, responsibility or sociability (FInkler 2005: 1069)

Most critical observers in the field of STS would today agree that there are no "amoral" technologies. As S. Jasanoff (2004)_________. (org.). 2004. States of knowledge: the co-production of science and social order. London and New York: Routledge. so aptly insists, scientific and technological artifacts alter our way of looking at the world, producing effects that are at the same time moral, metaphysical, political and symbolic. Sahra Gibbon (2013)____. 2013. "Ancestry, temporality, and potentiality: engaging cancer genetics in Southern Brazil". Current Anthropology, Potentiality and Humanness: Revisiting the Anthropological Object in Contemporary Biomedicine, 54(S7): S107-S117., in her discussion of genetic markers for possible breast cancer in southern Brazil, comments how, in certain scientific publications, the new technology appears to exert a "telescoping effect" on perceptions of past and future. Tuned into a global agenda sensitive to issues of race and genomic studies, researchers present the results of their clinical studies midst speculations on the "European ancestry" and likelihood of "Caucasian haplotypes" among certain present-day populations. Gibbon, however, goes on to demonstrate through interviews with medical researchers and patients that such perceptions are neither linear nor homogeneous. In her analysis, it is the mediating influences of particular regimes of living that help explain what, in practice, prove to be highly "mutable" and "plastic" ways of interpreting the genetic information provided by globalized technologies.

A recent article on "Indigenous DNA" (Kowal et al. 2013KOWAL, Emma; RADIN, Joanna & REARDON, Jenny. 2013. "Indigenous body parts, mutating temporalities, and the half-lives of postcolonial technoscience". Social Studies of Science, 43: 465-483.), discussing the cryopreservation of body tissues -- the freezing and thawing of blood samples used in scientific research-, carries still further the analysis of mediating influences that affect the impact of genetic knowledge. Far from treating DNA as some sort of a temporal entity, the authors argue that the meaning of this "co-produced" artifact mutates over time. In their proposal to demonstrate a "temporalized form of interrogating dynamic negotiations between technical and social orders" (p.471KOWAL, Emma; RADIN, Joanna & REARDON, Jenny. 2013. "Indigenous body parts, mutating temporalities, and the half-lives of postcolonial technoscience". Social Studies of Science, 43: 465-483.), they evoke the various temporalities involved in the biovalue of blood samples held in the scientist's laboratory. Over the decades, the political attitudes of the indigenous groups engaged in guarding or releasing these samples have changed. Furthermore, many of the scientists who established the original accords concerning the gathering and use of blood samples, having grown old,have left or are about to leave the research scene. What happens when a new generation of researchers takes control of the biobanks? Finally, the potential uses of the material have been multiplied by recent technological developments. The "biosocial mutation" implied in the conjugation of these different temporalities, the authors suggest, decries simplified dichotomies of modern/pre (or post)modern, pro-science/anti-science, North/South or us/them.

The reflections of Kowal et al. are, of course, directed toward a purpose different from ours. Theirs is a reflexive effort to bring the ethics of science and scientists under the analytical microscope. Nonetheless, transpositions to our theme are tempting. Evoking the temporality of DNA, the authorssweep aside presumptions of "hardrock" scientific fact. Placing the emphasis on various forms of "scientific sorcery"- ie., the network necessary to assure a blood sample's scientific usefulness --,they jostle DNA off its pedestal, putting it alongside other technologies (in our case, technologies of identification). In the process, they have prodded us to examine the "mutations"involved in these other technologies- for example - written legal documents. Where as Kowal et al., speak of "imperial compulsions" that tend to colonize "subjugated knowledges", we will be targeting legal state bureaucracy that competes with lived memories. In lieu of biologists, given to "technocratic optimism" and the belief in a clearly defined past, we will be thinking of state and legal operators who rely wholeheartedly on written documentation. Instead of cryopreserved DNA, thawed and mined for new purposes, we consider written artifacts from the past -- sometimes lost, often altered -- that are reenacted on the contemporary human rights scene.

Carrying forward this sort of feedback from STS into the analysis of other thematic domains, we reconsider in this article certain of Finkler's assertions on DNA and kinship. To allege that genetics may promote an "asocial" reckoning of kin with time-space compression is to presume that previous technologies (documents? memory?) were eminently "social" and with clear lineal temporalities. When put to the test of a comparative analysis, does such an opposition hold? With heightened awareness of the dynamic and interdependent nature of the various technologies of identification, we hope to raise new ways of looking at the reconfigurations caused by genetic tests geared to verify family belonging.

The timely construction of a human rights cause

The high point of the meeting in Maritubawas to be the announcement of DNA test results that would confirm or deny the sibling relation between two women in the community. Their story -- similar to that of many others undergoing testsin Acre, Amazonia, Minas Gerais, São Paulo, and throughout Brazil - demonstrates the combined effort of a number of important actors: patient activists, politicians, academic researchers and geneticists. To understand the role of each, let us first look more closely at the two women being tested in Marituba.

The younger sister, Iara5 5 I have used pseudonyms in this article in the paragraphs relating to ethnographic observation. , was born in the Colony of Marituba where both parents were in treatment. Not more than a few hours old, she was duly registered by attending nurses in the name of her genitors andsent to live in a preventório - a specialized orphanage where she would grow up with the sons and daughters of other patients interned in the colony6 6 In a 1944 report, Brazilian philanthropist, Eunice Weaver, proudly announces the existence of 22 of these "modern homes" for the healthy children of victims of leprosy, spread through 18 states and housing at the time nearly 2,500 youngsters (Weaver 1943). . Neusa, the older sister, had been born years before Hansen's disease affected her mother's life. Fruit of a brief romance between two adolescents, her birth had taken place in the modest, rural abode of her maternal grandparents and she was "given away" soon afterwards to be raised by her mother's aunt and uncle. Although Neusa had never been legally adopted, all her identity papers, from the birth certificate on, registered this aunt and uncle as her biological parents.

Both sisters had lived intermittently in other towns, and even other states... But, tied in through a similar network of kin, both were once again settled in the close-knit neighborhood of Marituba at the time of the DNA test. Now, as they prepared for the anticipated benefits to be allotted the "separated children", the first-born, hoping to legally prove a biological connection with her mother - long since deceased --, needed her younger sibling's cooperation. Since Iara had documents attesting to her status as daughter of a compulsorily interned patient of Hansen's disease, they reasoned, it would suffice for Neusa to prove, through DNA testing, that she was indeed the younger woman's sibling.

Notwithstanding the homey, almost humdrum, aspect of the scene, the ritual devolution of the DNA test results was fruit of several decades of political activity and the coalescing of several important allies. The key group of people responsible for the scene we witnessed in Marituba consists of activists and volunteers from the social movement, MORHAN. Since its founding in the 80s, MORHAN has shown great ability in the navigation of choppy political seas in direction of the movement's goals. Initiated by ex-patients of Hansen's disease who had spent the better part of their lives in leper colonies, the movement began during the "democratic reopening" of the early 1980s. Its leaders quickly forged affinities with other of the decade's many grass-roots associations, establishing national headquarters in São Bernardo dos Campos - heart of the modern labor union movement -- where they would conquer a life-long ally in the person of Luis Ignácio da Silva (the nation's future president, known as Lula). Weathering a number of challenges - from the death of key figures and change in leadership to a more conservative political climate during the 90s, and, recently, the professionalization of NGOs - the movement has managed to survive and prosper while maintaining its roots solidly in the overwhelmingly working-class population of those whose lives have been "affected" by leprosy.Elected president of Brazil in 2002, Lula put human rights and reparation for past violations high on his administration's agenda. Reflecting a timely international trendof humanitarianism particularly sensitive to images of suffering, the new mood brought diverse sorts of "victims" into the limelight (Fassin 2012FASSIN, Didier. 2012. Humanitarian reason: a moral history of the present. Berkeley: University of California Press., Gatti 2011GATTI, Gabriel. 2011. "De un continente al otro: el desaparecido transnacional, la cultura humanitaria y las víctimas totales en tiempos de guerra global". Política y Sociedad, 48(3): 519- 536.). Here, alongside awide array of categories with a legitimate cause -- quilombolas 7 7 Descendants of Afro-Brazilian slaves. , indigenous groups, people with disabilities, battered women, etc. -- MORHAN quickly found a leading role.

Run almost entirely by unremunerated volunteers, the movement today occupies an important place in national and international forums on health issues, promoting measures to combat the still alarmingly high incidence of Hansen's disease in Brazil8 8 With over 30.000 new cases diagnosed every year, Brazil appears in epidemiological statistics behind only India in number and proportion of cases. . Evidence of the public health campaigns MORHAN wages for the eradication of Hansen's disease and the combat against all forms of discrimination can be found on the movement's internet site and blogs.At the same time, the movement, working through regional and local chapters throughout the country, aims at promoting the quality of life for patients and ex-patients of Hansen's disease. At the moment, efforts are concentrated on the filhos - the "separated children" who were deprived of their parents because of state policies. In periodic meetings held in the neighborhood of former colonies, people summoned through social networks by phone and internet gather to hear reports on the progress of their cause, to fill out preliminary forms, and to performother varied tasksdeemed necessary to lay claim to hoped-for benefits. With powerful allies such as Chief Minister Gilberto Carvalho and President Dilma Roussef who have publicly manifested their support, the filhos' optimism is understandable.

Not least among its allies, MORHAN has inspired or collaborated with a good number of academic scholars such as myself (e.g., Maciel et al. 2003MACIEL, Laurinda Rosa; Oliveira, Maria Leide Wand-del-Rey de; Gallo, Maria Eugênia N. e Damasco, Mariana Santos. 2003. "Memória e história da hanseníase no Brasil através de depoentes (1960-2000)". História, Ciências, Saúde - Manguinhos, 10(supl.1): 308-336., Mendonça 2009MENDONÇA, Ricardo. 2009. Reconhecimento e deliberação: as lutas das pessoas atingidas pela hanseníase em diferentes âmbitos interacionais. Tese de Doutorado em Comunicação Social - UFMG, Belo Horizonte., Monteiro 2003MONTEIRO, Y. N. 2003. "Profilaxia e exclusão: o isolamento compulsório dos hansenianos em São Paulo". História, Ciências, Saúde. Manguinhos, 10 (supl.1): 95-121., Serres 2009SERRES, Juliane. 2009. Memórias do isolamento: trajetórias marcadas pela experiência de vida no Hospital Colônia Itapuã. Tese de Doutorado em Estudos Históricos Latino Americanos - UNISINOS, São Leopoldo.). Together with journalists whohave produced in recent yearsa formidable arrayof videos and articles for mass consumption, these researchers have played an important role in reconfiguring the image of the colonies -- from a model Utopia to a nightmarish Holocaust --, and that of the colonies' interns -- from lucky recipients of the government's humanitarian benevolence to victims of state terrorism9 9 We have been inspired here in the analyses of Alexander (2002) and Gatti (2011) on the reconfiguration of the massacre of Jewish people during World War II - from "war atrocity" to "crime against humanity". .

As the by now well-established narrative goes, it is in these hospital-colonies, built for the most part in isolated rural areas that, starting in the early 1940s and continuing on for nearly half a century, the Brazilian hygienic services confined people diagnosed with leprosy. In the early years, the "sick" of all ages and classes would be brought in whether they wanted such treatment or not. There are many poignant stories about mothers torn from their children by the "sanitary police", about youngsters "abducted" at school and carried off to the colonies (Maranhão 2005MARANHÃO, Carlos. 2005. Maldição e glória. São Paulo: Companhia das Letras. ). As time went on, internment policies became more flexible, but those who remained in the institution - sometimes for decades -- were submitted to draconian restrictions.

On paper, the project was ideal. There was to be a semblance of ordinary life in these little cities. Designed to be self-sufficient, they housed from one to three thousand people. Patients would be put to work on the premises - the women doing laundry, cleaning or working in the kitchen, the men producing rice, beans and other staple products in the surrounding fields, or building and repairing the colony's many pavilions. The more specialized patients might help out at the hospital; others would take on administrative responsibilities or man the community radio. Some might receive a small salary, paid with special coins minted exclusively for institutional life.

In fact, financial and administrative support was never steady. Ex-patients consistently describe periods in which food grew scarce and medical care all but nonexistent, likening their experience to that of prisoners or war confined in a concentration camp. And, although patients eventually conquered the right to establish marital unions, they were denied any possibility of a standard family life. In the name of the child's welfare, infants were taken from their mothers within hours of birth and carried off to the closest preventório. The tearful stories describing these forced separations of mothers from their new-born infants are legion. According to institutional policies, communication between parents and children was kept to a minimum, restricted at best to a monthly visit during which no physical contact would be tolerated.

Not all the filhos grew up in an orphanage. Many, especially those born before their mother or father's internment (as in Neusa's case) were dispersed in the homes of distant relatives or family friends. Some passed only briefly through the orphanage before being given in legal adoption, with or without their parents' consent. Many of the institutionalized youngsters ended up being reintegrated into their original families when their parents - either pronounced cured or abruptly expulsed by a change in health administration policies -- were released from the colony. But the youngsters continued to bear the psychic and physical scars of years of institutionalization in far-from-ideal circumstances.

Compounding an already grievous situation, some youngsters have lost trace of their original identity. Because of fraud, incompetence or sheer bureaucratic indifference, they have no legal proof of what they have lived through. And that is where yet a third group of alliesof fundamental importance for the Marituba meeting comes into the picture: the geneticists who offered the possibility of a DNA test.

The coordinator ofINAGEMP (the National Institute of Scienceand Technology in Medical Population Genetics) at the Federal University of Rio Grande do Sulhas long been a volunteer collaborator of MORHAN's.She played a key role inarticulating aprevious project on the history of leprosy colonies in Brazil (Schüler-Faccini 2004SCHÜLER-FACCINI, Lavinia. 2004. "Projeto global sobre história da hanseníase: Projeto Acervo - MORHAN". Cadernos do MORHAN, 6: 9-13.). In 2011, as the filhos movement gained steam, sheand her team proposed a new sort of partnership with MORHAN through the Project Reencontro (Reencounter). This time, with research funds provided by the Brazilian Ministry of Science and Technology (CNPq), the idea is to use DNA in the service of human rights, validating the identity of those filhos who, because of faulty or missing documentation, have been unable to demonstrate their family links. Organizers estimate that some 1000 of the 30,000 filhos will need this sort of validation.

There can be no doubt that the use of DNA analyses in the Reencounter Project draws inspiration from the experience of the Argentine Abuelas de la Plaza de Mayo (Abuelas 2008ABUELAS de la Plaza de Mayo. 2008. Las abuelas y la genética: el aporte de la ciencia en la búsqueda de los chicos desaparecidos. Buenos Aires: Los Talleres Gráficos Gutten Press/APM., Regueiro 2010REGUEIRO, Sabina A. 2010. "Análisis genético para la identificación de niños apropiados: construcción política y científica de la 'naturaleza' y el parentesco". Revista de Estudos Feministas, 18(1): 11-32. ). Just as DNA was used to restitute the "suppressed identity" of children whose parents were murdered by the military dictatorship, so it is now being used to reaffirm the biological identity of Brazilians whose parents, sufferers of Hansen's disease, were sequestered by the state sanitary police. The link between the two movements is made explicit by the project coordinator in public talks to lay audiences as well as in academic articles (Penchaszadeh and Schüler-Faccini 2014____.; SCHULER-FACCINI, Lavinia. 2014. "Genetics and human rights. Two histories: Restoring genetic identity after forced disappearance and identity suppression in Argentina and after compulsory isolation for leprosy in Brazil". Genetics and Molecular Biology, 37(suppl. 1): 299-304.). Yet, contrary to the Argentine case, the MORHAN project is not geared to press criminal charges against any particular individual. The "accused" here is the state itself, summoned to make reparation for the violence it has perpetrated in the past. All parties being tested have come forth voluntarily. There is no legal injunction obliging them to submit to the process. Here, the test is intended to help people press legal claim as victims of a crime against their basic human rights.

The somewhat blurred "paper trails" that document the past

The use of DNA entered tardily into this movement. Thefirst generation had relied entirely on documentary evidence to qualify for benefits as victims of compulsory segregation. Between the passing of the 2007 law and January of 2014, nearly 12,000 dossiers had arrived in Brasilia where a special Interministerial Commission of specialists (including researchers, medical doctors, state-appointed administrators, and a representative of MORHAN), organized by the Special Secretary of Human Rights (SSHR), would pore over documents to decide which of the candidates was legally entitled to receive the lifetime pension.

Theoretically, the process should have been simple. A candidate had but to prove that he or she had been committed to institutionalizationin a certain place (one of the leprosy colonies), and at a certain time (during the years of compulsory segregation). In fact, it took a lot of work to clarify who had lived through what experience. Policies varied from state to state. In some regions, compulsory internment appears to haveloosened upearly on -- in the fifties -- soon after specialists from the World Leprosy Conferences declared that, as a measure to combat epidemics of leprosy, segregation was useless. In other regions, confinement was considered to have continued into the 1980s, long after the 1976 law decreeing its demise. Also, there was some discussion about the type of leprosy each patient was registered to have had, since not all types had called for compulsory segregation (Maricato 2014_____. 2014. "Direitos humanos, papéis e hanseníase: múltiplos testemunhos na produção de provas da internação compulsória". In: Anais da 29ª Reunião Brasileira de Antropologia, Natal/RN, 2014. Mimeo.).

At any rate, written documents to prove the where and when of experiencesforty years old were not necessarily easy to come by, much less decipher10 10 See Scott et al. (2002), Herzfeld (1992, 2005) and Peirano (2009) for some of the vast discussions about written documentation as part of the technologies of governance. . The federal General Law of Archives, making administrations responsible for the records they keep, is a recent element on the scene - passed in 1991. Most colonies had neither the staff nor the know-how to care for archives. If, by some miracle, the patient's file had survived decades of administrative indifference, the printed forms were often incomplete, and full of ambiguities. In some dossiers, ex-patients were able to produce nothing more than a signed statement from a present-day administrator responsible for the region's out-patient clinic stating that the petitioner had been interned in the local colony at a certain date.

Another sort of problem the Commission had to face concerned the identity of the petitioner - if he or she was indeed the person referred to in the historical information provided by the colony administrators. There exists a national identity card in Brazil, containing a person's thumbprint, photo, and date of birth, as well as the name of both parents. But, the RG, as it is known, is generally established on the basis of a person's birth certificate that includes neither photo nor fingerprints. Especially in the middle decades of the last century, birth certificates were often not established until years after the child's birth, making it nearly impossible for the registrar's office to demand any corroborating evidence aside from the declarant's say-so. Furthermore, the system of nationalID documents issued by the different states lacks federal articulation. Hence, a person may have many different IDs. It is therefore not surprising that, in the screening of demands, experts called in from the office of Federal Social Security were able to pick up a number of apparently deliberate frauds: the same person who, under different identities, had submitted plural demands for financial reparation; people who had assumed the identity of a deceased internee, etc. However, it was much more common to encounter what appeared to be administrative errors - names that were slightly altered from one document to the next; parentage or dates of birth that were different in hospital records from those on the ID card, etc. In such cases, the historians and ex-administrators of the colonies who worked on the Commission were sorely needed to interpret the spotty data provided in the dossiers.

Already challenging for the first generation of activists (the colonies' internees), documental complications are compounded for the generation of filhos. In ideal cases, the parents are still alive and have already gone through procedures proving they were institutionalized for Hansen's disease during the critical period of repression. The children, having been declared at birth as their parents' biological offspring, and able to prove this filiation by showing a correct ID, are told they will have no problem in laying claim to benefits. But in most cases the parents died before the 2007 law was passed, and the children will have to do their own detective work, going after the dusty documents they hope have been kept somewhere in the colony's files. With luck, they may find their parent's admittance form, albeit with possibly disturbing information. Although most theseforms registered the new patientsin reasonable or good mental and physical condition, their "intellectual level" is frequently marked "null" ("knows how to read and write" is yet another item on the form), and the category "indigent?" is more often marked yes than no. Written by hand on the lines for miscellaneous commentaries, there may be a mention of how many children the patient had, but seldom anything else - no mention of age or sex,much less name of the offspring. To prove filiation, the filho separado must therefore show up with a proper birth certificate -a feat easier said than done when referring to the mid-1900s, a time when Brazil was largely rural, most children were born at home and many registered only years later.

Child circulation between the homes of parents, grandparents, godparents, neighbors, and acquaintances- already a common child-rearing practice in Brazil's working class populations (Fonseca 1995FONSECA, Claudia. 1995. Caminhos da adoção. São Paulo: Editora Cortez.) -- was accentuated in the case of filhos. Here, disease only added to a long list of difficulties (poverty, migrations, death and conjugal instability) that urged toward a pooling of resources. Most of the foster parents, if not illiterate, lacked familiarity with the state bureaucracy, and so - when called upon (at a school or hospital) to produce the child's documents -- they would simply follow the most expedient path, taking out the child'sbirth certificate as though they were the genitors.This practice, although technically illegal, was extremely common and, in most cases, appeared satisfactory for all concerned. Nonetheless, as time passed - the child matured or the circumstances changed - the "false" filiation could present problems.

Neusa's is a case in point. The womanadmits that when she was a child circulating among the households of differentrelatives, her faulty birth certificate seemed to be of little importance. Practically allsheknew about her birthmother was that the woman had been confined in a colony because of Hansen's disease. But, with the pending law of reparation for "separated children", suddenly the accuracy of her birth register took on new importance. The problem now was: having been born at home, how was she to prove her "true" identity? Witnesses of her birth, even if she could locatethem, would not carry sufficient weight to alter her legally established birth certificate. A quick DNA test, such as those commonly used today in court services to settle paternity disputes, was excluded since both parents were deceased. Neusa's luck was to have a living sister who had beencorrectly registeredin the name of a mother whose confinement in the colony had been legally demonstrated. Without Iara's proper documentary records, proof of their sisterhood would have been useless. Here, DNA is not a substitute but rather a complement to documentation.

There are instances in which filhos consider they may altogether dispense with worries about identifying their parents. For, example, Edmundo -- leader of one regional chapter of MORHAN -- explains that, although he has both parents' names on his identity card, this fact does not necessarily help him. Since his parents died before the 2007 law, they never put in for benefits and he can't be sure they'd have found the documental proof to qualify. Nonetheless, he has no doubt about legal proof of his rights, "My birth certificate states that I was born in the maternity hospital of the colony during the years of compulsory segregation. And that's enough." Ironically, it is those filhos born in the colony's maternity ward who have the best chance of proving their parental heritage as, in most cases, administrative staff would take care to assure proper birth registration either at the hospital or at the closest office of registry.

Since the preventórios were reserved exclusively for the children of the colonies' internees, a filho might also prove his or her right to reparation by demonstrating residence during some time in childhood at such an orphanage. However, if medical archives from the colonies are far from ideal, written documentation from these orphanages is even more problematic. Many of these institutions changed hands over the years, alternating between different religious orders of the Catholic church. By the early 1980s, with the end of compulsory segregation, the institutions were being channeled toward other populations: the homeless, the elderly, etc. During the following decade, with the anti-manicomial movement going strong11 11 We refer here to the movement that spread from Europe and North America toward other parts of the world during the 60s and 70s, to de-institutionalize mental patients and other patients living in asylums. , and the general condemnation of large-scale orphanages written into the 1990 Children's Code, most buildings that had housed the filhos were demolished. Hence, people trying to chase down the "paper trail" to prove their status commonly report that they have not been able to find any trace of the institution's records, much less an administrator legally responsible for such archives. Some searchers, their suspicions peaked by media reports on scandals relating to Catholic orphanages of the past, and projecting the church's fear of financial liability, will mutter that the "loss" of documents is deliberate: "They say there was a fire, but, as far as I'm concerned, the fire didn't start by accident."

We see then that documents - easily scattered or destroyed -- may be hard to come by, fragile, and even perishable. And when they materialize, they may be subject to suspicion of fraud. In fact, outside the technological network necessary for the standardization, preservation and classification of accessible documents, written registers are of little worth. Nonetheless, once considered "in order" - with certificates properly rubber-stamped - they take on the air of long-lasting legitimacy.The geneticist quoted at the Marituba meeting appears firm in her assurance that once a person's identity (and filiation) has been legally established, "No one can take that identity from you".

And yet, throughout the Western world, DNA technology has recently provoked the "mutation" of a number of legal statuses previously considered irrevocable. Dolgin (2009)DOLGIN, Janet. 2009. "Biological evaluations: blood, genes, and family". Akron Law Review, 41: 347-398., for example, speaks of ways in which, in U.S. courts, genetics have "unhinged tradition" by dethroning the "marital presumption" in paternity cases12 12 See Fonseca (in press) for changes in a similar direction in Brazilian law and jurisprudence. . In France, "irrevocable" adoptions have likewise been reverted in the name of a biological father's right to lay claim to a child given up by its birthmother (Fonseca 2009__________. 2009. "Abandono, adoção e anonimato: questões de moralidade materna suscitadas pelas propostas legais de 'parto anônimo'". Sexualidade, Saúde, Sociedade - Revista Latino-americana (CLAM, on-line), 1: 30-62.). Paraphrasing Kowal et al., we would suggest that these cases provide examples of how the legal order reworks the past and future in non lineal ways in keeping with politically charged presents (2013: 472KOWAL, Emma; RADIN, Joanna & REARDON, Jenny. 2013. "Indigenous body parts, mutating temporalities, and the half-lives of postcolonial technoscience". Social Studies of Science, 43: 465-483.).

There remains, however, the question: Just how much do these changes in identification technology speak of (or mirror) actual social relationships? By drawing closer, in the next item, to the subjects in question, we hope to outline some points that might provide an answer.

Recollections: the importance of support technologies

As 50-year-old Tamara guides me through her neighborhood streets, waving to people on their front stoops, she comments, "We're all family around here". In fact, it would seem that the vast majority of the filhos from any one region know each other well. For example, the meeting described above took place in an area that previously belonged to the "Colônia de Marituba". Nearly all those who live in the surrounding avenues belong to one or another of the extended kin groups descended from the colony's previous patients. Most of them also have relatives still living in the Colônia do Prata, an even older institution, founded in an isolated rural area around 100 Km away. Although some have managed to find jobs in local commerce or working as mechanics or cleaning ladies in Belem, many earn their living by helping out at the single institutional remnant of the old colony - a residential home and out-patient clinic dedicated to people who suffer the sequels of Hansen's disease. In the small, semi-attached apartments inhabited almost entirely by elderly ex-interns, a younger generation is employed to care for their "aunts" and "uncles" - people who carry remembrances of certain genealogical connections.

For people still in the neighborhood, it is narrated recollections - especially those of the community's older members - that are the most reliable sources of information on the past. Through the retelling of their own lived experiences, midwives, hospital employees or simply neighbors and relatives of the older generation are key to filling in the blanks left by faulty birth certificates, unknown paternity or informal adoption. Even those who no longer live in the area may find the recollections of a particular bureaucrat more helpful than official records. Alba, a young woman adopted in infancy by a middle-class family in Belém had never thought to search for her birth family. But, upon checking her birth records in order to replace a lost ID card, she was taken by surprise when the publicclerk, working in a town just outside the colony in which she wasborn,exclaimed, "My! So you're the daughter of X and Y. I'm the one who married your parents." And thus, soon after, Alba's reencounter with her birth family - welcome although not sought after --took place.

Alba's story speaks of one sort of "support technology" that can activate narratives and produce or change feelings of family belonging - tidbits of knowledge provided by eye witnesses. But in many cases, death and geographical distance creates obstacles to the mining of this sort of information. In the following case, we see how it took years - and the proliferation of modern communication technologies (transportation, phones, etc.) for vague memories to actually take effect.

Marília, a young mother-of-three living in Belém, is one of the "separated children" who, despite never having suffered personally from Hansen's, has incorporated the disease as integral part of her family saga. As she tells the story, her mother was only nine years old, living in a rural area of Macapá, when the family was told she had leprosy. At first, they built a separate hut where she was to live well removed from the others, but her big brother - feeling sorry for her - decided to take her to the city where she might hope for treatment. Thus, he placed her in domestic service in the city of Belém, without mentioning to the employers anything about his sister's affliction. Five years later, the disease could no longer be hidden, and when the employers found out, they took the 15-year-old girl straight away to the Colony of Prata. Soon after, the girl's mother, havinglearned of her whereabouts, traveled to the colony totry and take her daughter home, "but the doctors explained that they mustn't live together - because of the contagion". And so, the little girl matured, married, had children, grew old and died - all in the colony -- without ever again seeing anyone from her original family.

Last summer, Marília goes on to say, she had taken her kids to spend a couple of days at her (paternal) uncle's house in the rural village built around the remains of "Prata";

...and, out there in front of the church, I saw this couple I didn't recognize - odd, because everyone around here knows one another. They were taking pictures. I thought it was one of you [reporters and researchers who come through]. The fellow was asking everyone about a Dona Sebastiana, but no one could figure out who he was talking about. Finally someone remembered - "Do you mean Dona Babá? It seems her name was Sebastiana. Maybe you should talk to Marília". So he came over and talked to me. I said, "Yeah. Sebastiana - that was my mother's name". And, still sort of puzzled, I answered his questions: yes, she had family in Amapá and, yes, she had three daughters'. That's when he started to cry. He took out his cell phone and I heard him say, "Ma. I've found them. I've found Auntie's family".

For the narrator of this tale, it is absolutely logical that hercousin's mother had been trying for years to find something out about a beloved little sister sent away decades before.The importance of blood relations has been brought home to Marília by growing up around her paternal relatives - a veritable clan. Fourteen of her father'ssixteen siblings had had "this disease", and most either lived in or were somehow connected to the colony. Some of her uncles were able to hold regular jobs at the city docks, others stayed in the colony, occupying influential slots reserved to interns - such as sheriff. Having spent much of her childhood with a foster mother who lived close byandbrought her on regular visits to see her parents, Marília maintained a strong sense of family. Today, she keeps in touch with this vast web of kin through facebook where, among snapshots of herself and her daughters, she publishes the visual registers of family events crowded with cousins on her paternal side. And yet, as the young womanreminds me, she had always been curious about her mother's relatives. Her opinion that "I don't look like anyone in my father's family" left interrogation marks that would only be voiced (and answered) after she had reunited with her maternal kin.

Marília's mother, interned during the sixties, obviously did not have the benefit of the internet. For that matter, she probably didn't have any of the other material supports of identification. As we said above, many if not most people did not have a birth certificate - principle identity document at the time -- until far into their adult years. Photos were practically non-existent. Occasionally, I would see, hanging on a living-room wall, the faded black-and-white posed portrait of forbearers - for example, a couple on their wedding day, their simple garb and unsmiling faces portraying the solemn esthetic of the time. But even in the unlikely event that Marília's mother had managed to find and keep treasures such as a photo - or even her parents' proper names -- it would probably not have been much help. The woman had no means (money or maps) to travel, phones were practically inexistent, and, in the case of this largely illiterate population, addresses irrelevant.

I heard ofonly one instance in which contact with a long lost relative was reestablished by letter - a contact initiated by therelative who had been legally adopted in Germany. After having tracked down her birth mother through legal records at the court house, the adopteewrote her a long letter,addressed to and duly delivered by the local social services. However, as the adoptee's sister tells me, no one in the family remembers much about that - whether the letter came in German or Portuguese, what the German sister's address was, etc. Their mother has long since died, and the letter appears to have been lost when the family moved house. The failure of the German adoptee to reactivate ties with her Brazilian relatives suggests that a blood relation is not enough to "belong" to a family. It would appear that, here,for "family reckonings"to be of consequence, they must include more than the memory and recognition of biological ties.

Reckoning kinship, narrating the past

Recollections, as we see in Marília's story, help to fill in the dots, placingindividuals within what they perceive as the given structure of their blood kin. They also rekindle notions of "practical" or "performative" kin - i.e., family relations created through shared experience. Here, once again we invoke Carsten's work which -- building on the insights of David Schneider, perspectives in feminist anthropology, and practice theory -- underlines the creativity of non-procreative experiences of relatedness constructed through everyday acts such as co-residence, commensality, cultivating the same fields, etc. Thesepractices of participation, revealed through ethnographic particularities in specific contexts, are innumerable. However, they have in common the idea that relatedness is under constant construction. It is the cumulative result of the hard work involved in making and maintaining relations (Carsten 2000: 26CARSTEN, Janet. 2000. Cultures of relatedness. New approaches to the study of kinship. Cambridge: Cambridge University Press.).

Lambek (2007)LAMBEK, Michael. 2007. "The cares of Alice Alder: recuperating kinship and history in Switzerland." In: J. Carsten (org.),. Ghosts of memory: essays on remembrance and relatedness Oxford: Blackwell Pbs. pp. 218-240., exploring the mutuality of memory and kinship, points to the notion of "care" as a way to understand the "deep temporality" of this hard work: "Caring is the form of remembering generally characteristic of the ethos and practice of kinship everywhere"(p. 220). Indeed, in our ethnographic explorations, caring about and caring for one another proved to be crucial for determining who counted as an intimate relation. However, we insist: acts and experiences of care become relevant through explicit narrative references. Narrations of the past are, in this sense, reckonings of kinship. The feeling of family is nurtured by tales told and retold (Van Vleet 2008VAN VLEET, Krista E. 2008. Performing kinship: narrative, gender, and the intimacies of power in the Andes. Austin: University of Texas Press.).

As I chatted with a group of filhos, seated around a kitchen table in the Colony of Prata, I was amazed at the endless number of stories they could weave collectively together. The sentiment of relatedness seemed to be fueled not only by the shared experience of people from a close-knit community, but also by mutual recognition of how they had suffered under the harsh conditions of institutionalization. Some of the filhos are reputed to bear the mark of the orphanage in their very bodies, in the shape of their "pot-cover" (tampa de panela) heads. (Supposedly, to facilitate care, babies were doped and left sleeping on their bellies for so long that their heads took on the flatness of the bedding.) However, relatedness is most evident in remembrance of specific acts of caring for one another.

Although most of the "separated children" had siblings in the same institution, their recollectionsappear to concern other children - those who were closest in age, worked in the fields together, or suffered at the hands of the same caretakers. During our chats, they would summon one another to confirm their stories: "Remember how mad the nuns got, how they punished us, when we jumped the wall to pick tangerines?", "Remember how I took care of you that time you broke your arm?", etc. Closeness to those of the same age group appears to be heightened by the feeling many filhos share of having been abandoned by their parents.

There were patientsin the colonies who fought hard to maintain contact with their institutionalized offspring - defying restrictions and freighting their own collective transportation in order to visit "every second Sunday of the month". Marília recalls how she managed to "escape" the orphanage when she was five or six years old thanks to this collective effort. "It was the father of another girl who saw what was happening, but when it came visiting day, there, everyone was father and mother." The visiting father reported to Marília's parents that she appeared doped - and that they should get her out before shebecame feeble-minded like so many of the other institutionalized children. And so the six-year-old left the orphanage to live with a friend of her parents.

However, many of the youngsters went years without any contact with their mother or father. Some say that, of the patients interned in the colony, only those without skin lesions were allowed to visit"so as not to frighten the children". Others claim that parents had to "prove negative" - i.e., be pronounced cured -- before they were allowed near the orphanage. One way or the other, the adults were normally forbidden to touch their children - explaining the repeated reference in people's narratives to the low brick wall (or, depending on the colony, glass pane) that kept the two generations physically separate during visits. It is not surprising that, together with sickness and penury, the frustrating circumstances of visiting day caused many parents to desist from the effort.

And so, when years later, children were summarily reintegratedinto their families (either because they had grown to majority or -- as in the case of the younger filhos -- the orphanage had shut down), many parents as well as childrenhad the impression they were being condemned to live with complete strangers. The many bizarre coming-home storiesreflect yet another experience thatthe "separated children" have in common.To illustrate, let us come back to Edmundo. During one of our interviews in his comfortable brick house, I expressed admiration of his home. "Built by my dad", he told me, "but we never lived here together":

Mom gave her first child away. We know nothing about him. Then the three of us (two brothers and a sister) were born while my parents were in the colony. I was sent away from the maternity when I was only hours old -- carried away in a basket with two others. I was eight when the administration decided to de-institutionalize. The orphanage people told my mother that they'd be returning the kids to their families. My father was working in Santarem at the time. When she called to tell him their children would be coming home, his answer was: "What children? The government took them, let the government raise them". And he threatened he would beat her within an inch of her life if she took us back.

We see here how certain experiencesdeactivate what others might consider natural kinship relations. Not only Edmundo's father no longer considered himself tied to his children, Edmundo also finds a way to minimize connections to his father.We saw earlier how he insists he has no need to demonstrate a filial tie with his parents in order to accede to the benefits of a filho separado. (It is enough for him to prove he was born in the colony hospital because, at the time, all patients were internees and all children were sent to the orphanage.)We may deduce that - just as people with a family history of genetic disease have a way of re-interpreting their genealogies in terms of local contingencies - so our interlocutor signifies his documental identity in terms of his own life experience: minimizing the importance of genealogical connections and underlining individualizing information such as place of birth.

There are, on the other hand, experiences that activate unexpected forms of kinship. Edmundo goes on to explain that, upon release from the orphanage, he and his brothers and sister went to live with his sister's "adoptive" parents for about six months. By then their mother had died from complications of Hansen's disease and Edmundo began "rolling" between the houses of different people -- ex-internees of the colony as well as the nuns who assisted the neighborhood.

As mentioned above, this manner of socializing child-raising responsibilities was not uncommon in Brazilian's working-class populations. Many of the filhos have older brothers and sisters who - just as Neusa -- had been placed as infants in another family (usually relatives or neighbors) before their birthparents were sent to the colony. Others, such as Marília, born during their mother's internment, were brought up either in the orphanage or in a foster home of their parents' choosing. Still others, such as Edmundo, extended their network of significant others after they left the orphanage. Some youngsters, given away as infants, may never find out they were adopted. In most cases people grow up well aware of the difference between one set of "parents" and another. Yet, indifferent to distinctions concerning blood relations or legal status, they will continue to name these various foster parents (whether referred to as "mother" and "father", or "aunt" and "uncle") when asked to elaborate on their family history.

There is no firm rule in these situations. This sort of family belonging is not a fact, but rather a process reactivated and deactivated by remembrances as well as by present-day social interactions. Understandably, it is precisely this sort of "performed" kinship that is largely ignored by legal institutions. When summoned to be of service to the formal justice system, DNA's contribution appears to lean in other directions.

In wait of a day of reckoning

Much of the technological rigor used in the case of the filhos is similar to that used in Argentina to locate the children of political prisoners and desaparecidos kidnapped during the military dictatorship. There, a "grandparentage index" was developed in the mid-1980s so that the genetic relationship between alternate generations could be verified, even in the absence of parents. The criteria used today in Project Reencounter to verify siblinghood is a logical extension. Yet, technology has become at the same time more sophisticated and simpler than when the Abuelas began their activities. Today, both projects use the Applied Biosystems test kits involving a high number (in Brazil, 23) short tandem repeats loci. With the analyzed material havingchanged from blood to saliva, samples are gathered with relative ease in different geographic locations and the vials transported in light room-temperature bags to the accredited university lab where analysis takes place. With MORHAN activists preparing the necessary documentation - including a photocopy of the individual's identity card and proof of address --, it takes no more than two technicians to gather up to a hundred samples in a day. As of early 2014, some 196 tests had been run. A sibling relationship was confirmed in 158 cases. In the other tests, with less than 80% coincidence of STRs, results were considered inconclusive, suggesting the relationship of half-brothers or of more distant relations (Penchaszadeh and Schüler-Faccini 2014____.; SCHULER-FACCINI, Lavinia. 2014. "Genetics and human rights. Two histories: Restoring genetic identity after forced disappearance and identity suppression in Argentina and after compulsory isolation for leprosy in Brazil". Genetics and Molecular Biology, 37(suppl. 1): 299-304.). There have been, up to now, only two outright "exclusions" of consanguineal relations.

For the filhos' legal purposes, however, the DNA results are still in the preliminary phase of a "hard legal fact". The law has not yet passed that will require proof of family belonging, and, when it does, it remains to be seen exactly what importance will be given to genetic tests. For the moment the tests, although under rigorous control, from collection of saliva samples to the ultimate signing of the lab report, do not have the official status of a court-ordered test. Only time will tell, if and when the new law is enacted, whether or not the courts will validate these tests or if they will require others.

But the genetic tests seem to exert other important effects, independent of their legal validity. MORHAN's coordinators, referring to DNA's tremendous popular appeal, describe how the test increases coverage in the media as well as guaranteeing a sizable audience at the organization's meetings. It is thus an active ingredient in the collectively constructed version of past events (Fonseca and Maricato 2013_____.; MARICATO, Glaucia. 2013. "Criando comunidade: emoção, reconhecimento e depoimentos de sofrimento." Interseções, 15(2): 252-274.). It serves further as an aggregating force, literally bringing people together. Brothers and sisters who have been estranged for years are put in touch because one of them needs to legally document their family tie. In many situations, the years of separation nurtured resentment against what was perceived as abandonment. For some of my interlocutors, to be "forgotten" by a brother or sister seems almost as reprehensible as to be "abandoned" by a parent. Activists are convinced that an understanding of the exceptional circumstances that caused the family's separation helps heal these wounds, "increase auto-esteem", and promote more congenial relations among kin. As we see, the test appears to be feeding into prevailing genetic mystique (Nelkin and Lindee 1995NELKIN, Dorothy; LINDEE, M. Susan. 1995. The DNA mystique: the gene as a cultural icon. New York: W. H. Freeman e Cia.).

Perhaps the most striking effect brought on by the introduction of DNAdeals with a form of sociability that spans life and death, extending into the future. Having discovered the potential of DNA testing, the Argentine abuelas reacted with enthusiasm donating their genetic samples to the "bank" in the hope that, even long after their demise, victims of suppressed identity might still discover the truth of their origins. So too in the case of the filhos, there now exists a databank composed of the genetic samples taken from living individuals in the hope that some as yet unknown relative will eventually show up.

Hope is all the more poignant in the case of relatives supposed long dead. During the years of internment, it was not uncommon for parents to receive news that their child sent to the orphanage had died. And yet, as people tell me, they were shown no tangible proof of the youngster's death - no death certificate or little graves to visit. My interlocutors have learned through stories in the press how, at the time, orphanages might conduct covert operations,furnishing adopted children in exchange for large sums of money. And they wonder if the orphanage's report of the child's death was not simply a cover-up for this sort of illicit operation.

Just as in the Argentine case, here also, there's a certain urgency in collecting genetic material from the parent generation. Most of the original patients forcibly interned in the leper colonies have died, but some are still living. Since, the team from INAGEMP does not contemplate doing exhumations, the genetic samples from these survivors may prove crucial in the identification of "lost" filhos. Nonetheless, many of the samples connected with the 60 odd entries in the bank were donated bypeople in search of a lost brotheror sister - a strong indicator of the importance of sibling ship in this context.

In fact, the reopening of seemingly settled facts shows to what extent the notion of "family" extrapolates dyadic parent-child relations, affecting a wide array of relatives in successive generations. During the public events organized by MORHAN, one might encounter a cluster of middle-aged adults - all somehow related and some with their own teenage children in tow -- come to investigate the story of their lost brother, cousin or aunt.Before the movement that literally created the filhos as a recognized and self-recognizing collectivity, infant deaths had been all but forgotten, assimilated into vague memories with no clear implications. The DNA banks have, to a certain extent, brought these deceased members of the family back to life. Circumstances of birth, probable age, and other defining elements, gleaned from the recollections of the older generation, suddenly become solid facts in the family's history.And the inexistence of any documentary proof (of the death, and sometimes even life, of the child) only heightens the mystery that the DNA samples, it is hoped, will one day solve.

In this case, the DNA test operates a sort of moral coupling between, on the one hand, recognition of the "facts" of the filhos' connections and, on the other, recognition of the state's violation of their fundamental rights. The culmination of this process is projected into the future -- a sort of day of reckoning -- when the purportedly dead will come back to life, families will be reunited, and the filhos will finally receive their just compensation. It is interesting to observe how, in this expectation of moral retribution, "reckoning"- previously defined as an ever-incomplete process -- narrows to something resembling an absolute truth. Just as DNArevealsthe ineluctable truth of family connections, so the law of reparation will finally bring out into the open the "history that Brazil wanted to ignore". Science and morality unite in ultimate triumph, relegating to backstage the fragile connections that made all this possible: the genetic calculations produced through scrupulously observed laboratory techniques, as well as the hard political investments involving decades of activism.

* * * *

We have described in this paper a political movement aimed at legal reparation for human rights violations perpetrated by the Brazilian government against children of the compulsorily institutionalized patients of Hansen's disease. We have chosen to conduct our investigation by exploring the action of intertwining technologies -- narrated recollections, written documents, and the DNA test -- employed by major actors to "reckon" the family connections at the core of this drama. Resort to the notion of technologies has permitted us to underline not only the materiality of certain processes, but also the complex temporalities at play. Written records are created, falsified and destroyed according to new situations, demanding an organized bureaucratic structure that guarantees preservation, validation, and access before any document can take on legal value. Personal narrations rework facts and relationships in function of possibilities afforded by new social, political and technological circumstances.From the recruitment of test subjects by activists, to the collection and examination of samples by scientists and the (hoped-for) validation of tests by jurists, DNA tests entail a still more elaborate network in order to produce "solid facts". In other words, not one of these modes of reckoning appears intrinsically more consistent or long-lasting than the others. The usefulness of these different technologies depends very much on the various mediations that give them life.

Altogether, the particular way these technologies interact and evolve in the reckoning of family ties depends very much on yet another temporality - that of the political context. In mid-2014, as I finish this paper, the political movement, orchestrated through enthusiastic local chapters of MORHAN, has gathered the filhos, reopening long-forgotten episodes from each individual's past, as well helping to consolidate a feeling of community. It is this political movement that has brought DNA tests into people's lives, established a wide audience for personal narratives, and made legal documentation of the past and present a vital issue.

Harkening back to Carsten's thesis, it appears clear in this instance how political events as well as collective institutionalized structures - operating through the mediation of these diverse technologies - have produceda particular kind of sociality, interwoven with new perceptions of family and community.Political forces have been crucial in bringing about a realignment of the different modes of reckoning that reach into the past and project onto the future elements that constitute the way people situate themselves in the world. In the process, facts are rearranged and relationships are consolidated or, eventually, undone. But throughout all, one finds a steadily growing idea of moral entitlement furnishing the hope of a common goal - a goal that evokes and refashionsnotions offamily belonging as well as ideals of social justice.

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  • 1
    Aside from the many colleagues (most of whom are cited in this article) who have somehow contributed to this article, I would like to thank my anonymous reviewers for their invaluable provocations.
  • 2
    Movement for the Reintegration of those affected by Hansen's disease.
  • 3
    GlauciaMaricato, a student of postgraduate studies in Anthropology at the Federal University of Rio Grande do Sul (see Maricato 2013MARICATO, Glaucia. 2013. "Filhos separados, reparação já: economia moral e a produção de direitos". In: Anais da X Reunião de Antropologia do Mercosul. Córdoba: Editora da Universidade Nacional de Córdoba. Mimeo., 2014_____. 2014. "Direitos humanos, papéis e hanseníase: múltiplos testemunhos na produção de provas da internação compulsória". In: Anais da 29ª Reunião Brasileira de Antropologia, Natal/RN, 2014. Mimeo.), has been a close collaborator in all phases of this work.
  • 4
    It is used, for example, to criticize Amnesty Laws that decree what is deemed by many a premature closure to debates on state-perpetrated atrocities.
  • 5
    I have used pseudonyms in this article in the paragraphs relating to ethnographic observation.
  • 6
    In a 1944 report, Brazilian philanthropist, Eunice Weaver, proudly announces the existence of 22 of these "modern homes" for the healthy children of victims of leprosy, spread through 18 states and housing at the time nearly 2,500 youngsters (Weaver 1943WEAVER, Eunice. 1943. "Social service in the fight against leprosy in Brazil". Leprosy News and Notes, 11: 74-75.).
  • 7
    Descendants of Afro-Brazilian slaves.
  • 8
    With over 30.000 new cases diagnosed every year, Brazil appears in epidemiological statistics behind only India in number and proportion of cases.
  • 9
    We have been inspired here in the analyses of Alexander (2002) ALEXANDER, Jeffrey.2002. "On the social construction of moral universals. The 'Holocaust' from War Crime to Trauma Drama". European Journal of Social Theory, 5(1): 5-85. and Gatti (2011)GATTI, Gabriel. 2011. "De un continente al otro: el desaparecido transnacional, la cultura humanitaria y las víctimas totales en tiempos de guerra global". Política y Sociedad, 48(3): 519- 536. on the reconfiguration of the massacre of Jewish people during World War II - from "war atrocity" to "crime against humanity".
  • 10
    See Scott et al. (2002)SCOTT, James C.; TEHRANIAN, John & MATHIAS, Jeremy. 2002. "The production of legal identities proper to states: the case of the permanent family surname". Comparative Studies in Society and History, 44(1): 4-44., Herzfeld (1992HERZFELD, Michael. 1992. The social production of indifference: exploring the symbolic roots of Western bureaucracy. London: University of Chicago Press., 2005____. 2005. "Political optics and the occlusion of intimate knowledge." American Anthropologist,107(3): 369-376.) and Peirano (2009)PEIRANO, Mariza. 2009. "O paradoxo dos documentos de identidade". Horizontes Antropológicos, 15(32): 53-80. for some of the vast discussions about written documentation as part of the technologies of governance.
  • 11
    We refer here to the movement that spread from Europe and North America toward other parts of the world during the 60s and 70s, to de-institutionalize mental patients and other patients living in asylums.
  • 12
    See Fonseca (in press) for changes in a similar direction in Brazilian law and jurisprudence.

Publication Dates

  • Publication in this collection
    June 2015

History

  • Received
    07 Aug 2014
  • Accepted
    08 Feb 2015
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