Participation as Inclusion and Exclusion: Policing the Boundaries of “Citizenship” in Roma Health Mediation

Methods

This study is based on an ethnography written after 11 months of fieldwork in Romania (2014–2015). I conducted participant observation in two core case sites (one city and one village) where health mediators worked, living for two months in each. I visited seven other sites for shorter periods (1–6 days), which offered different social, cultural, economic, and political contexts. Through comparison I looked for regularities and exceptions, and refined and amended emerging theory (Charmaz, 2014), one of which was the inclusion and exclusion of subjects through participation, explored in this article. In each site I also conducted in-depth interviews with health mediators, community members, and health professionals.

No form of participant observation could ethically take place without the mediators’ agreement. I spent 6 months scouting for appropriate core fieldsites in Romania. I settled on one village and one city (located in geographically distant parts of Romania), one case where mediation was said to work well, and one where it was said to work less well. In each of the two core field sites I observed mediators at work. In interviews, I aimed to speak to participants who felt well disposed towards the mediator and to those who had more ambivalent feelings. I use in-depth examinations of individual relationships and place them in their context to develop theory around how mediators and community members negotiated processes of Roma health mediation. This paper draws on the cases of Roberta in Colină and Viorica in Dacia City. Roberta’s work in particular exhibited the most poignant examples of what I have termed ‘participation as social exclusion’. Throughout the article, I have also brought in examples from interviews and observations in other fieldsites, to exemplify that although Roberta was an outlier in the extremity of her enacted mediation practices, I found that other mediators applied a similar logic and practice to their work.

I started learning Romanian specifically for the purpose of this study and, by the time I began fieldwork, I was able to conduct conversations, interviews, and focus group discussions without an interpreter. In total, the study included 40 interviews and 3 focus group discussions in 9 locations: 3 focus groups with health mediators (1 with 6, and 2 with 4 mediators), 13 individual interviews with health mediators, 11 with health professionals (7 doctors and 4 nurses), 6 with community members, 6 with key informants (NGO workers, and Roma health mediation programme designers and implementers), and 4 with other participants (2 town hall officials, a school mediator, and a religious leader). I explained my study and the consent process to participants, taking care especially with those who struggled to read, and received verbal and written consent from everybody whom I interviewed.

All interviews were audio-recorded (except one doctor who did not give consent for recording). The interviews followed a topic guide that I tailored to each individual, which covered open-ended questions about participants’ perceptions of the aims and scope of health mediation, the relationships between mediators and communities, as well as relationships between mediators and health professionals. The interviews lasted approximately an hour, sometimes up to two hours. A Romanian researcher (Alina Huzui) transcribed and translated the interviews as I collected them. During the process of open line-by-line coding and continued memo-writing (Charmaz, 2014), I developed a coding framework, which I used to analyse all transcripts. Following ethnographic traditions of writing (Emerson et al., 2011), I then used an iterative analytical framework in combination with my fieldnotes to write up my findings in multiple iterations. Here ‘participation as inclusion and exclusion’ emerged as a theme across sites. Throughout the paper I use pseudonyms for the names of places and individuals. Because of the relatively small number of mediators in Romania, and because most villages, towns, and cities only employ one mediator, I have changed attributes of both people and places where disclosing these might compromise anonymity. The study received ethical approval from the London School of Hygiene and Tropical Medicine, as well as local approval from the Romanian Institute for Research on National Minorities.

Teaching communities how to be good citizens

In Colină, I spoke to Nina, who used to be the mediator before the current mediator, Roberta, took over the position. I asked her why she thought that some people lacked the documents they needed for health insurance. She told me that in her experience, it was only ‘Roma families’ that did not manage to get their papers in order. She said it was because they – ‘the Roma’ – were ‘very sluggish’. With regard to children without papers, she spoke of this as an act of parents ‘destroying’ their child’s rights. With this, Nina made cultural rather than structural arguments about why certain people did not have identity documents. She linked the absence of papers to supposed cultural traits, rather than connecting it to questions of economic and social precarity. In other places too, I saw a connection between the way that citizenship was promoted, enacted, and policed and the ways in which ‘Roma communities’ were spoken about as a cultural group.

Roberta, who had replaced Nina as the local health mediator, and who also self-identified as Roma, reasoned that ‘Roma’ were currently not seen as legitimate members of Romanian society because ‘they’ (by which she meant ‘the Roma’) were not complying with their responsibilities as citizens. Too many of ‘them’, she said, were unemployed, not paying taxes, and not bringing up their children correctly. If people expected public institutions to help them, she said, they had to comply with the law. She argued along homogenising and essentialising lines, emphasising the cultural uniqueness of the Roma. She said:

… they aren’t used to this. They are used to being free. Without laws, they don’t comply with anything. Hence, as mediator you have to teach them, to get to the phase where they all have identity cards, and certificates, to have a job, and access to education.

Roberta not only linked lawlessness with ‘the Roma’, she also suggested that there was a developmental ranking linked to social constructions of racial hierarchies, that ‘the Roma’ had not ‘yet’ reached the phase in which they knew how to be ‘good citizens’. ‘They’ were ‘still’ in the phase of being ‘free’, which in this context had connotations of being primitive. She mapped undesirable attributes onto the very notion of what it meant to be ‘Roma’, and being ‘Roma’ meant needing correction.

In a focus group discussion, a couple of mediators complained about a particularly marginalised community they were working with. ‘They believe they have only rights, never any obligations’ – ‘no obligations’, another mediator chimed in. This narrative was related to the question of what could be reasonably expected from citizenship, and consequently in what capacity they were able to enact it ‘correctly’: no access to rights without first fulfilling obligations. What were these rights and obligations, and what do they say about the kind of citizenship that was being advocated?

My observations and conversations with mediators indicated that they saw their role as mediators encompassing more than health. Roberta addressed the question of how to be a good citizen, underpinned by an idea of individual responsibility. This was echoed by Viorica, the mediator in Dacia city, who charged citizens with the responsibility of earning their rights, which were granted on condition of fulfilling certain obligations. Viorica told me that patients had: ‘the right to life, the right to health, the right to education, the right to protection, the right to anything’. But, she countered, they also had certain responsibilities: ‘towards the family, the authorities […] they must pay taxes […] take the children to school, look after their health and education, right? They have the right to work, but they also have the obligation to work’. This perspective on citizenship seemed to be more closely aligned with state-level concern with activating parts of the population in the name of the economy than with empowering community members to actively take part in political processes. Responsibilities included having valid papers, working, paying taxes, and being ‘good parents’ by sending children to school. She presented teaching communities about their ‘rights and responsibilities’ as one of her main duties. These mediators seemed concerned with promoting a certain type of citizenship, one which fostered individual responsibility, which they implied ‘the Roma’ were falling short of.

One explanation for why this discourse of individual responsibility and blame might be so prominent among mediators may be found in the way that health mediators are trained. When I observed one of the training sessions, I saw how mediators were schooled to think of their task in a highly individualised way, with little attention to structural forces that engendered the kind of scenarios they were wrestling with every day. As part of their training, mediators were confronted with a range of problems (framed as ‘cases’), and they were examined on how they would solve each of these ‘cases’, preferably on their own. As I go on to show below, this atomised approach to community members facilitated their role in governing and regulating people.

Policing the boundaries of citizenship and patienthood

Above I have indicated how mediators embraced an approach to ‘citizenship’ which discursively foregrounded individual responsibility, blame and the need for correction. In what follows, I want to show how this discourse also spilled over into how mediators enacted health mediation. Here I outline how part of a mediator’s role was also to chart the boundaries of citizenship and patienthood by delineating who did and who did not have the right to be a citizen or patient, a benefit that would only be earned upon the fulfilment of individual responsibilities.

One day, a woman came to Viorica’s office in Dacia, in search of advice from her as the local mediator about getting an abortion. The woman who came to see her had 9 children and was 11 weeks pregnant. She had neither health insurance, nor GP registration. Viorica, the local health mediator, had met her before, and knew that she and her whole family were facing a forced eviction from the house in which they were living. Viorica told the woman that she would probably have to go to a private doctor. ‘How are we going to pay for that?’ the woman asked. ‘Does your husband work?’ ‘No, he doesn’t’. ‘Do your children go to school?’ ‘No, they don’t’. ‘That’s against the law’, Viorica remonstrated, ‘they could send you to prison for that. Why aren’t they at school?’ Thus reproaching the woman, she indicated that it was because of the family’s own failings that they were uninsured, that they would have been covered, if the husband had been employed. Viorica gave her the name of a private doctor to call. As the woman left, Viorica explained to me that the main problem was that the woman had not registered with a GP, or else she would have access to free contraception. On the surface, their interaction was about accessing health care. Underlying it, however, was Viorica’s discourse about the responsibilities that a citizen had to fulfil in order to qualify for access to free health care as a patient within the Romanian health care system. Although I knew that she was aware of these factors, Viorica did not seem to take into account the difficulty of finding legal employment in the decaying suburb that the woman had come from, nor the large sum of money that was required for long-term unemployed people to be covered by national health insurance. The interaction had started as one about obtaining access to health care and ended up being about correcting the woman’s and her husband’s behaviour as citizens and as patients. Viorica pointed to ways in which this family did not fulfil their obligations as citizens, and outlined how they could become ‘good citizens’.

I observed a different interaction between Roberta and community members, in which she actively policed their behaviour as citizens. Mediators were often spatially associated with state authorities. Many of the mediators’ offices were physically located in the town hall, which they would sometimes share with social workers. In Colină, Roberta not only shared an office with the village social worker, she also took on tasks associated with social work for the majority of her working day. This was not unusual: I heard reports of this happening elsewhere. Roberta did not volunteer for this role; she had been pressured into it by the mayor, who saw in her a useful additional worker whom he did not have to pay from the municipal budget since her salary was covered by the Ministry of Health. Although mediators were paid centrally, they were hired and fired by the municipality. This made their position extraordinarily precarious, as they were beholden to mayors’ whims. On one occasion, I witnessed the mayor pressure Roberta into fiddling the books so as not to exclude one of the mayor’s friends from receiving benefits. From the health mediation programme’s perspective, Roberta’s role as a social worker was at odds with the health mediation programme’s policy, which explicitly denounced mayoral uses of mediators to their own ends (Wamsiedel, 2013).

Roberta did not seem to observe the discrepancy between her supposed role as a health mediator and her actual role as a social worker and ‘workfare enforcer’. She appeared to embrace the two, and – at least in my interactions with her – she maintained that they were compatible with each other. As a social worker, she assisted with benefit claims. She checked that people had no undeclared income, that they had filled in the right form at the right time, evaluated them, and calculated their benefits. In this sense, she was enabling people’s access to their ‘rights’ as documented citizens within the weak net of Romanian social security. But her job exceeded this, inasmuch as she was also involved in delineating the boundaries of this citizenship by making sure that people in fact were ‘deserving’ of the benefits they received. Calculating benefits also involved calculating the number of workfare hours that their benefits would translate into. In addition to this, Roberta was occasionally charged with ‘monitoring’ people during workfare. In Colină, workfare took the shape of clearing ditches with scythes, cutting grass in communal areas, or clearing litter. If people were found not to be working, they would lose access to their benefits. If somebody failed to meet the conditions of ‘citizenship’ set out by the town hall, they were seen as undeserving of their ‘citizen’s rights’.

Whenever I questioned Roberta on this aspect of her work, she defended it – sometimes, I felt, with pride. Roberta justified her monitoring of the community, saying it gave her the opportunity to do health mediation. I asked to join Roberta on one of these workfare days. It was a scorching hot day, and the people who turned up were mostly teenagers who were performing the required workfare labour in place of older relatives. This, Roberta allowed. They arrived with their own scythes, and one man had brought his horse and cart to pull the hay down the road as they proceeded. They worked from 10 till 3, at a consistent but leisurely pace, chattering and joking while swinging their scythes from side to side, clearing the ditches to make way for a new concrete gutter, sweat dripping from their brows. Roberta’s role in monitoring people during workfare was to give instructions as to which sections of the road needed clearing, and to check whether everybody on her list had been physically present until the end of the day. If nobody monitored them throughout the day, she explained to me, people would just sign the register in the morning and in the evening without having done any work in the meantime. If people did not turn up, she said that ‘unfortunately’ she had to register them as absent, even if that meant that they would not receive their social allowance for the month: ‘That’s the law’.

Roberta’s role was ambiguous. Because she spent her days at the town hall, the cost of this spatial conflation was that community members such as Adela, whom I introduced at the outset, identified her with the state authorities: someone just sat in the municipal office ‘like a bear’, occasionally announcing workfare hours. She appeared to see her as somebody who was not there to help, but to enforce the rules of the state. A citizen’s right to social assistance was conditional on the fulfilment of certain responsibilities (such as workfare), whose enactment was policed not just discursively, but physically by Roberta, even though she was appointed specifically to be a mediator between authorities and the community. Roberta’s role in Colină was simultaneously to serve the community’s interest, to embody the law, and to act as an ‘informant’ for state authorities. The two roles could not convincingly be contained within the same body. The role of social worker/ ‘workfare enforcer’ carried greater weight with the mayor, such that it prevailed over that of health mediator. Due to her subordinate rank within local bureaucratic institutions, Roberta had an interest in embracing her role as enforcer of state authority. In a different location, I caught a glimpse of counter-conduct that hinted at the fact that mediators may at times also be tinkering with the rules for the benefit of the communities they work with. One mediator, for example, remarked about the sporadic necessity to act in defiance of the law, explaining to me how she had signed up a dead man to social benefits.

Discussion

At the beginning of this article, I quoted Adela talking about Roberta in unflattering terms. During the course of my fieldwork, I came to understand not only her hostile tone, but also the compromised position that Roberta found herself in. Even though Roberta’s role – as per programme design – was to build trust, Adela herself did not appear to trust Roberta, most likely because their main interaction was limited to Roberta announcing the workfare hours that Adela had to perform in exchange for social benefits. With little formal education, seven children, and a living earned through seasonal work, Adela struggled to qualify as a ‘citizen’ in the way that Roberta outlined. One of the unintended consequences of mediation for town halls and mayors, was the way in which mediation appeared to strengthen the powers of the municipality, as Roberta’s role within the workfare programme illustrates. Roma health mediators were useful to town halls in that they helped to keep an eye on – or police – communities. Depending on local arrangements, the level of mediators’ involvement varied. Viorica, for example, did not operate in such close proximity with town hall bureaucracy. Because of their precarious position within the political structure of local authorities and in the health system, mediators such as Roberta who worked closely with the mayor did not seem to have much choice in the kind of work they were tasked with, and so cooperated with the mayor. Here it should be noted that over recent years Romanian town halls have themselves been forced into pursuing a programme of austerity, which has included decentralisation and cuts to benefits (Zentai, 2014). Economic austerity is therefore the broader context against which health mediation must be understood. Considering all the ways in which Roberta’s work was discursively and ideologically affiliated with the municipality, it made sense that Adela did not consider Roberta her ally. In what follows, I want to argue that this institutional and ideological alignment between mediators and state authorities can be read as an attempt at governing communities, which – as I outline below – can produce both social inclusion and exclusion.

Mediators as conduits for neoliberal attempts at governance

The above material describes how mediators’ work extended beyond health, how they became involved in the arbitration of ‘citizenship’. In this way, they delineated how to comply with the rights and duties that came with formal state membership, rather than the rules of accessing formal state membership itself. I want to argue that they promoted the ideal of a neoliberal subject citizen, which disregarded the notion of the citizens as political actors who might agitate or collectively mobilise for their rights (Isin, 2017). The particular technical and culturally grounded solution which the Roma health mediation programme offers is that instead of digging at the roots of social exclusion, it employs individual mediators to teach individual community members how to be ‘good citizens’ in a way that foregrounds exclusion as a depoliticised individual, and culturally situated problem. This links back to neoliberalism as a form of governance, which casts citizens as individual economic units who can either win or lose their right to be recognised and integrated by the state (Brown, 2016; Ong, 2006).

I have shown how Roberta and Viorica communicated to community members how to enact certain normative forms of citizenship, officially documented and assimilated to the demands of a workfare state. In consonance with neoliberal discourses of citizenship, they did not challenge, and on occasion even promoted, access to health care – and ultimately poverty – as an individual and cultural concern. Roberta and Viorica tended approached exclusion from health insurance as a personal rather than an institutional failing. They reframed access to health care not as a right that people already have, but as a benefit that must be individually ‘earned’ (Van Houdt et al., 2011) through the fulfilment of certain conditions attached to neoliberal forms of citizenship, which were set in opposition to ‘being Roma’.

In my reading, health mediation is an example of an intervention through which a large structural problem – here the problem of ‘Roma integration’ – is being sent down the pipeline: to be solved by the unit of the mediator, who was not equipped to deal with problems that arose from higher level structural problems such as economic stagnation, institutional racism, lack of educational opportunity, etc. The result is that mediators are left with little room for manoeuvre, explaining at least in part why they tended to extend municipal authority by following small-scale orders by the town hall.

Both Viorica’s conversation over access to abortion services, as well as Roberta’s role as an enforcer of workfare point to the ways mediators were involved in making people into particular neoliberal citizens and assessing their ability and willingness to conform to these forms of citizenship, thereby participating in discursive and enacted attempts to police its boundaries. As I witnessed it, the end point of health mediation as a social process was the endorsement of the conditionalities that were attached to citizenship, the sorting of the ‘winners’ who were deserving of citizenship and its concomitant rights, from the ‘losers’, who were further excluded. Mediators are thereby part of a whole structure of devolved authority which, disguised as ‘participation’, facilitates the governing of ‘Roma communities’, replacing law, regulation, and top-down authority with community-level actors (including not only Roma health mediators, but also Roma school mediators, Roma legal mediators, etc.). Far from only concerning themselves with access to health care, these community efforts figure in a range of strategies, technologies, and rationalities for the governing of ‘Roma communities’.

Here, citizenship was constructed and enacted to emphasise the mobilisation of human and social capital, and the transformation of welfare-dependent subjects into responsible individuals. This resonates with previous examinations of EU- and World Bank-supported employment or ‘activation’ schemes for ‘the Roma’ of East Central Europe. One study in particular, has shown how in the case of employment, ‘Roma inclusion’ is being pursued via neoliberal mode of governance (Van Baar, 2011). Roma health mediation is a formidable example of how similar logics have been applied to health. Alongside other programmes aiming at the integration of ‘Roma communities’, I suggest that mediation can be understood as a form of ‘ethnicity-based neoliberal governmentality’ (Van Baar, 2011: 202).

Participation as inclusion and exclusion

As I found, health mediation made a very direct contribution to improved access to health care for the community members it worked with. It did so mainly by supporting people trying to gain access to documents and health insurance, the absence of which I observed as one of the most salient obstacles to receiving care. Mediation thereby helped to ‘integrate’ these individuals into the Romanian social care system, as well as enabling them to attain the ‘rights’ they were entitled to. However, my observations of health mediation in practice suggest that, with the occasional exception of counter-conduct, mediators attempted to change people to fit the bureaucratic system. The programme also made a positive contribution to the lives of mediators, who, even amid the precarity of their working conditions, had jobs that provided them with a regular salary and access to health insurance, both of which were scarce resources.

One of the consequences of health mediation was the reinforcement of conceptual overlaps between ‘being Roma’ and being socially undesirable. In popular discourse, the social category of ‘Roma’ is constructed not only as inferior, but also as bad and undeserving (Vincze, 2015b). Conceptually, by positioning ‘Roma’ as a group in need of mediation/governing, the Roma health mediation programme is underpinned by constructions of ‘the Roma’ as a category of socially excluded people. This stabilises, perpetuates, and entrenches the position of ‘Roma communities’ at the margins of Romanian society. As exemplified in the way Nina and Roberta spoke about ‘Roma’ lax attitudes to documents, mediators tended not to challenge, but instead to promote the idea of ‘the Roma’ as a natural and given category of people who constituted a problem for Romanian society because they were ‘bad citizens’. Mediators communicated that marginalised groups would remain marginalised until they changed their behaviour. They reminded people that having access to citizenship also involves being ‘disciplined’.

Constructions of ‘Roma’ as deviant acted as a mechanism that shifted the blame for social exclusion on excluded community members. Seeing ‘the Roma’ as defective and as inferior justifies the need for ‘correcting’ them. It legitimises the ways in which mediators tried to shape community members, by communicating, enacting, and performing state interests to ‘Roma communities’. These attempts at transforming people can be seen as part of the ‘civilising mission’ of community members described in the critical literature on ‘Roma inclusion’ (Trehan and Kóczé, 2009). Mediators appear to be inadvertently contributing to the reproduction, promotion, and the enforcement of a morality in which ‘being Roma’ is conflated with the inability to conform to neoliberal forms of citizenship and in which ‘the Roma’ continue to be constructed as dependent on welfare, lacking autonomy and responsibility. Attempts at correcting and assimilating community members are reminiscent of participatory development projects across the globe which do not adequately recognise the role of structural environments and how they limit individual agency (Cooke and Kothari, 2001).

Health mediation thereby produces both inclusion and exclusion. The discourse and enacted practice of individual rights and responsibilities plays into the hands of those who are willing and able to display the behaviours deserving of the rights attached to citizenship. To a certain extent, health mediation contributes to the proposition that it is possible to address structural causes of inequality through participatory and culturally positioned interventions such as this. But framing the roots of exclusion in the cultural rather than the socio-economic domain only strengthens already dominant imaginations of ‘Roma’ as an immutable and deviant category. This may inadvertently entrench the exclusion of those who are seen as irredeemable, unable to be turned from ‘bad’ to ‘good’ citizen, usually those who already find themselves in a socially precarious situation. Health mediation as participation may thereby inadvertently act as a vehicle of social exclusion.

Mediation in context

A community health intervention such as the Roma health mediation programme is technically, politically and financially unable to tackle the underlying structural causes of social exclusion, such as economic deprivation and institutional racism. The neoliberal modes of health mediation that I observed have to be understood as part of their wider political context. After all, the health mediation programme itself is entangled by the bureaucratic structures, especially since the economic crisis and the resulting decentralised management. By participating in workfare instruction, and by equating the right to citizenship with the fulfilment of responsibilities such as working and paying for insurance, mediators appear to be acting as the messengers of an austerity-focused state apparatus. Such actions need to be placed within the context of a fiscal crisis that has led to increased conflict over redistributive politics and the allocation of infrastructure projects, public contracts, social benefits, and so on, alongside ever stricter and more individualised conceptualisations of citizenship. The discourse that I observed health mediators promote is part of a wider atmosphere in which patients are seen as having to earn their access to health care. The fact that mediators embraced and enacted these neoliberal discourses must also be set against the backdrop of their working environment, the way in which the programme was designed and is currently managed, as well as broader national and international discourses about the kind of position that is desired for ‘the Roma’ in particular and ethnic minorities more broadly (Vincze, 2015b).

The enactments of Roma health mediation that I witnessed were marked by many of the characteristics for which other participatory programmes have been criticised; namely that they do not transmit community demands ‘up’ to those in power (Kovats, 2003; Marston et al., 2013), and that they do not empower community members themselves to make their voice heard. It has been said that ‘participation by ethnic minorities in research, policy making, and the development of services might be one safeguard’ against dangerous and racialised practices in health (Bhopal, 1997: 1754). Closer examination of Roma health mediation suggests that for the purpose of empowerment and social inclusion, it may not be enough to ensure participation of marginalised groups: the way in which participation is organised and enacted, but also the wider context of participation is crucial to its capacity to transform practices and power relations (Campbell and Cornish, 2012). As Uma Kothari (2001) puts it, ‘programmes designed to bring the excluded in often result in forms of control that are more difficult to challenge, as they reduce spaces of conflict and are relatively benign and liberal’ (p. 143). As I have outlined, participation of this kind may even be less benign than state neglect; it may ultimately and paradoxically even promote further precarisation and exclusion.