“My baby is going to be born soon, and I am afraid,” Mira1 told me. This was her second pregnancy, and after a traumatic first birth, she was afraid that the medical staff would not pay attention to her concerns. Mira was twenty years old when she gave birth to her first child. She recalled how one of the midwives said to her that young Roma women like her give birth quickly and that she should not feel much pain. “She told me that I acted like a spoiled child, but I knew that something was wrong. Later, when the baby was not doing well, I was rushed in for a caesarean section.” Mira explained. Her second pregnancy was unexpected, and the news coincided with a COVID-19 wave that swept across Bulgaria in early 2021.
Mira spent the next few months of 2021 anxiously awaiting the birth of her baby. At age twenty-eight, she knew that the prejudice toward the Roma community had been amplified during the COVID-19 pandemic. Her fears were not unfounded. Numerous NGO reports and academic papers point out that Roma, known as the largest ethnic minority in Europe, experience health disparities and structural discrimination. The historical and repetitive representations of Roma as a collective “Gypsy menace” resurfaced during the pandemic. In Romani Chronicles of COVID-19, Paloma Gay y Blasco and Martin Fotta analyze how with the onset of the pandemic news, social media and state authorities referred to Roma as a people with a culture and lifestyle of disregard for rules. This was recognised as a “strategy with an ancient pedigree” and as what human rights organizations and academia have termed “anti-Gypsyism,” a form of dehumanization and institutional racism, that continues to perpetuate distrust towards Roma people, often manifesting in political discourse and everyday life.
Mira and I grew up in the same Bulgarian Roma neighbourhood. During my childhood, I was intimately aware of the stereotypes projected onto Roma “culture,” often perceived as fixed, unchanging and static by state and non-state actors and characterised by a pathological and generational propensity to reproduce so-called backwardness. Childbirth, as the reproduction of persons belonging to Roma culture, is central to the perpetuation of stigma towards Roma communities. Childbirth is both biological and sociocultural; that is, it enables the reproduction of physical persons with supposedly different cultural value systems that threaten national identity. Importantly, Roma reproduction does not only mean childbirth in biomedical and sociocultural terms. It is also about conceiving and reproducing the state and its citizens. Historically, post-communist states in Central and Eastern Europe with the most sizable Roma populations have viewed regulating Roma reproductive health as fundamental to assimilation and inclusion policies. Beneath state interventions such as taking Roma children into state care, forced sterilization and segregating Roma women in “Gypsy rooms” within maternity units, lay entanglements of inter-ethnic distrust and heuristics of deservingness of care. As state and Roma relations cohere over the bodies of pregnant Roma women, trust and distrust emerge as complex, layered, contradicting, and simultaneous social intersubjectivities permeating reproductive healthcare provision.
Trust as Social Capital: Collective Distrust and Individual Deservingness
It was a hot summer day, and the air in the corridor of the prenatal care unit was stifling. The place was overflowing with pregnant women waiting for their appointments. I was there with Mira, who had asked me to join her for a pregnancy scan. Mira hoped that her gynecologist would remember me from my time as a nurse trainee in the same hospital. I recognized Dr. Minev, a gynecology specialist in his late fifties, as he stepped outside his office, in a hurry for a quick break. On his return, he also recognized me amongst the women in the waiting room and asked why I was there. I explained that I was with Mira, and, once it was her turn to be seen, I joined her inside the doctor’s office. The doctor appeared anxious, and when I asked how the pandemic had been for him, he quickly uttered: “Covid-19 is ripping through the nation, but the tsigani (Gypsies) are still multiplying. The whole unit is full of them. No virus or anything else can stop them from procreating. Never mind the pandemic, they not only spread the virus but are also overtaking us by their vast numbers.” He continued with Mira’s examination as if what he said was a “reasonable” justification for his anxiety. Although Dr. Minev’s sentiments were not novel to me, I was deeply saddened. When he saw the shock on my face, he laughed. “You, of course, are different, as is Mira. This is her second pregnancy. She is not like her other Roma counterparts who give birth every year.” Mira looked at me and said under her breath “Do not say anything!” I did not. However, Mira’s story continues to perplex me.
Reproduction, as Faye Ginsburg and Rayna Rapp write, is a “slippery” concept, often referring to ideologies and intellectual traditions concerning social systems and capital. Individually, in Pierre Bourdieu’s terms, Mira and I possessed some form of social capital. Both of us were deemed as somewhat trustworthy by the doctor. I use “somewhat” here to point to a degree of uncertainty and trust as a preference, because Roma women as a group, to which both of us belong, were not considered as deserving of equal care. What differentiated Mira as a deserving or trustworthy patient from the collective of Roma women was the number of children she produced as compared with other Roma women, who produced ‘vast numbers’ of children and were therefore fearsome in the eyes of Dr. Minev.
Dr Minev’s distrust towards Roma collectives and hence Roma women’s deservingness must be placed within the social, political and national context at the time of the encounter. Across Europe, nationalism in a time of the COVID-19 crisis was framed as a source of unity between “us,” and division from “the other.” This division was rooted in fear of viral and moral contagion. Nationalism, Catherine Frost argues, is a moral claim underpinned by fear of the lack of national representation. As a public health representative, Dr Minev’s words reverberated state perceptions of Roma women as the bearers of a collective culture, the biological reproducers of citizens who were not representative of the nation. His distrust of Roma, as people living in duplicity and antagonism against the sustainable reproduction of the Bulgarian nation, echoed high-level narratives of ethno-nationalist movements preoccupied with Roma fertility behaviour. Indeed, Roma reproduction was the subject of numerous political speeches in pre-pandemic times. In these speeches, Roma women were accused of having multiple children to benefit from the state. In contrast, the Bulgarian Constitution, the highest legislative provision of the state, stipulates the right to health, including the equal treatment of all, regardless of ethnicity, gender and personal or social status. There is thus a large practical and existential chasm between legislation, social policy and what happens on the ground. As chronicled by activists and academics, Roma experienced the devastating impact of the pandemic with sometimes fatal consequences.
How was Mira to trust a health system that was both in crisis and historically predisposed to distrust her community? Mira distrusted the medical practitioners based on her previous negative encounters, but she was not a person without agency. She utilised all forms of capital – social, economic and human (including by involving me) – to gain the trust of healthcare professionals and access to equal healthcare. For Mira, the hospital was an institution within which she would survive only if she remained compliant, contacted people who knew the medical staff, gave gifts, and built relationality. She had to find ways of navigating a social order that places a burden on Roma women to continually overcome stereotypes. Challenging stereotypes, however, can be a daily struggle, and it can have multiple and tangible repercussions. In ‘Contesting Moralities’, I elaborate on the strategies that Roma women employ to confront stigma, including by internalising or not confronting stereotypes in order to necessitate socio-economic or biomedical survival.
A week after her scan, Mira gave birth to a baby boy. She had labor complications after the caesarean section. Due to COVID-19 restrictions, Mira’s husband was not allowed to be with her during the birth. He asked the doctors whether he could hold his son on his chest, a skin-to-skin practice to reduce stress in preterm infants, but the pediatrician replied, “I don’t trust you to be COVID-19 negative. What is important for you to know is that the baby is white.” Such bodily and symbolic imaginings commence from the very moment Roma children are born within healthcare settings. Whiteness as a biological and bodily trait is a symbolic indicator for proximity in the racial hierarchies; in other words, whiteness is a desirable characteristic for inclusion and in this case is interpreted as a form of social capital and potentiality. The regrettable inference from the pediatrician’s expression is that the lighter the skin color of Mira’s baby, the more trusted and accepted he would be. This longstanding pattern of “knowing” Roma according to their skin color is also the basis of far-right groups’ eugenic actions against the so-called Gypsyisation of the nation in a racial competition for supremacy over the nation’s genealogy.
The Necropolitics of Distrust: Fertilities against Nations in Crisis
Unfortunately, Mira’s story is not unique. A 2020 human rights report on discrimination against Roma women in Bulgarian maternity wards revealed that Roma women experienced higher levels of mistreatment, including poor communication and physical and verbal abuse, than women from other ethnic groups. Roma women’s experiences of mistreatment in maternity care during the pandemic resonated with worldwide reports of racialised health provision, with marginal women often being particularly affected. For example, Caroline Bazambanza has recorded strikingly similar experiences of Black women in the United Kingdom and the need for reproductive justice in response to public health policies facilitating hierarchical social orders and racialization. The historical economic and health disparities amongst pregnant minority women in the United States predisposed them to disproportionately high COVID-19 maternal morbidity and mortality rates.
Social injustices deepened across Europe through state securitisation under exceptional forms of pandemic governance. In research that Elizabeth Storer and I conducted for the Ethnographies of Disengagement project on COVID-19 vaccine uptake among disenfranchised communities in Italy, we found that distrust towards state vaccine initiatives among Roma was due to the historical and ongoing experiences of structural discrimination. The enforced containments and policing of the so-called nomad camps due to COVID-19 restrictions left many Roma unable to meet their basic needs. In Italy, I was told about the case of a Roma woman from Naples who gave birth in a local hospital and was discharged home. Regrettably, her condition deteriorated, and she needed emergency care. Like other Roma villages across Italy, her settlement was heavily securitized under COVID-19 restrictions, and she was not allowed to go back to the hospital. She died a week after giving birth.
The birth of “the other,” or the act of reproducing ethnic, racial, and physical boundaries, presents itself as an opportunity for the state to select, control, protect, and punish – that is, to limit the existence of “the other.” This resonates with Achille Mbembe’s concept of necropolitics, in which the expression of sovereignty has become the ultimate capacity to decide who deserves to be born and who does not. The root of such necropolitics is in structures of power shaped by cultural meanings of race and nation-states whereby the dangerous fertilities and racialized citizenship of “other” women are narrated and acted upon in nationalist, but also moral terms as positing threat to the future and existence of the nation-state. This distrust of the other in times of crisis, as illustrated in Mira’s story, can be reproduced by state agents, including healthcare professionals who are entrusted within the state apparatus to deliver the future citizens of the nation. As Ginsburg and Rapp write, the maternity unit is a state site where “some reproductive futures are valued while others are despised”’.
Trust is often taken for granted in healthcare policy. Nevertheless, the technologies of trust in healthcare are intertwined with the subjective everyday lived realities of relationships within medical practice. Trust and distrust can exist simultaneously, as exemplified in Dr. Minev’s sentiments. Hence, underneath the various meanings of trust, and the attempts to understand them, lay undiscovered, fragmented and elusive social intersubjectivities. For example, during the pandemic, Roma communities were commonly referred to as “mistrusting”’ state interventions, including vaccine rollouts. Delving deeper ethnographically, our research in Italy found that Roma mistrust in government and health authorities was due to historical discrimination which merged with present interventions . Additionally, Roma agency and efforts to belong and to be included were also part of the narratives encountered within my research. Roma who had an established relationship with a general practitioner were more likely to be vaccinated and to trust health professionals. For Mira to gain the trust of the professionals in the maternity unit represented an achievement, a commodity, a social capital to which she aspired but was ultimately denied, despite her best efforts. Crucially, this is a story of life lived, reproduced and hoped for to be considered in efforts for equitable dialogue and building trust at the heart of medical care.
NOTES
1 Throughout this piece, the names of interlocutors have been changed to maintain confidentiality.
About the Author
Iliana Sarafian is a postdoctoral researcher at the Centre for Public Authority and International Development at FLIA, London School of Economics and Political Science. Iliana is the author of Contesting Moralities: Roma Identities, State and Kinship (Berghahn, 2023). Her research projects focus on minority and migrant health and well-being in Bulgaria, Italy, Poland, and the United Kingdom.