Practices of belonging: claiming elderly care through deaf citizenship

ABSTRACT

This article explores relationships between deafness and citizenship claims, with a focus on deaf elderly and care. We concentrate on a care home for deaf elderly in the heart of the Netherlands, De Gelderhorst, as a site of deaf citizenship. Yet the claims to citizenship made through De Gelderhorst are far from singular. Rather, the center balances citizenship claims to the state as well as to the particular community that it constitutes. In this article, we explore the relationship between these multiple forms of citizenship that variably contradict and sustain one another. These multiple forms of citizenship, despite their contradictions, co-create a right to claim care and inclusion based on deafness. But which deafness? We explore how different deaf subjectivities by individuals and institutions alike are enacted. It is this multiplicity that allows for the claims to belonging, resources, or care that are embedded in deaf citizenship.

KEYWORDS:

• Deafness
• elderly care
• belonging
• cultural citizenship
• biological citizenship

Introduction

This article explores relationships between deafness and citizenship claims. Deafness refers to the experience of being deaf¹ as well as the labels used to categorize people on the basis of their hearing. To do so, and to understand how deaf subjectivities are articulated and related to citizenship and belonging, we focus on elderly deaf people and their preferences for care. Care is particularly suited to study these processes, as it ‘generates membership in numerous social formations, across scales’ (Thelen and Coe 2017, 1). Furthermore, by understanding citizenship as the right to claim rights (Isin 2012), we can see deaf citizenship as entailing the right to make claims on collective provisions such as care as well as inclusion in different realms of belonging on the basis of bodily characteristics.

In our analysis, we focus on an elderly center in the Netherlands, De Gelderhorst, which caters specifically to deaf elderly. Entering De Gelderhorst is like stepping into another world: all residents are deaf and so are many of the staff. Sign Language of the Netherlands (NGT) is the in-house language used by all, and the building’s central atrium and open balconies on all floors are designed to allow visual communication across distances. De Gelderhorst aims to provide a deaf-friendly environment in which deaf elderly can lead their lives without the barriers and misunderstandings that often shaped their experiences in the hearing world. This is not to say that deaf people or deaf elderly are a homogenous group. On the contrary, Deaf Studies scholars have increasingly emphasized the variety of ways in which one can be deaf and the multiple experiences of deafness (Monaghan et al. 2003), exemplified at De Gelderhorst. Strikingly, the center flourishes at a time when budget cuts in long-term care and changes in care organization have virtually done away with elderly homes in the Netherlands (Hiddinga 2018). The center’s success in this context depends to a large extent on strategically balancing multiple articulations of what it is to be deaf, and on choosing when to foreground certain deaf subjectivities over others.

In trying to understand how such strategic arranging takes place, we use the notion of subjectivity both to describe the experience of being a deaf subject and to analyze the ways in which subject positions – always in a process of becoming – are shaped by historically contingent settings (cf. Blackman et al. 2008). By exploring the enactment of various deaf subjectivities at De Gelderhorst, we show how they allow access to different avenues of citizenship and corresponding rights claims, and how this multiplicity is used strategically by management and residents. In this way, we see De Gelderhorst as constituting a site of deaf citizenship (Isin 2009) where multiple deaf subjectivities are enacted. Practices of belonging inform negotiations over citizenship: for certain deaf subjectivities a space of belonging is created, while others may be included in discourse but excluded in practice. Varied narratives of deafness are thus formed, contested and negotiated in practices of caring and interacting as elderly and deaf.

With our study based on interviews with residents² and center staff, we respond to the noted paucity of empirical studies of ‘the everyday world of citizenship’ (Desforges et al. 2005 cited in Lister 2007, 58). In doing so, we follow Isin (2009) in shifting from asking ‘who is the citizen’ to ‘what makes the citizen’. By exploring how deaf subjectivities are enacted, we show that subjectivity is not uniform and fixed, but rather should be understood as contingent and influenced, in part, by claims to multiple forms of citizenship and the benefits they might offer. It is in this vein that we conceive of citizenship, implying that it is a process in time with the intention of a particular outcome: the right to claim rights (cf. Isin 2012). The positioning of deaf people as distinct social groups claiming rights has evolved over the last century or so. We first briefly discuss this to better understand what is involved in claiming citizenship on the basis of deaf subjectivities at De Gelderhorst.

Deafness and citizenship

International and national organizations of and for deaf people have been active since at least the mid-twentieth century.³ Membership of the deaf community, concurrent rights and obligations following from this membership, and equal access to national provisions are key elements of their programs. In the Netherlands, the central body, Dovenschap, ‘strives towards a society in which deaf people are seen as confident and involved citizens who should have the same responsibilities, opportunities and quality of life as others.’⁴ The use of the words such as ‘strive’ or ‘should’ suggests unequal social status between deaf and non-deaf people. This organization thus asserts the right of the deaf to claim equal citizenship on the basis of deaf subjectivity.

How then does this deaf citizenship take shape in laws and regulations, through institutions and related practices in, for example, education and care, and, importantly, how do deaf people relate to these different notions of citizenship?

Belonging through difference

The physical body is recognized as an important marker for belonging to a social group in critical citizenship studies (e.g. Petryna 2003). Disability is one of the identity markers that has been brought forward as neglected and rarely incorporated in the analyses of citizenship theorists, despite being an important social category for the formation of new claims to inclusion and belonging (Isin and Turner 2002). This is relevant to deaf citizenship in that deafness is often taken to refer to a physical disability: the inability to hear.⁵ In the field of disability studies however, scholars have resisted the identification of disability with bodily defects and have shown its inherently social nature (e.g. Oliver 1996). This conceptualization of disability as a social category has been instrumental in transforming disability from a physical issue into a rights issue. Furthermore, the cultural framing of disability has given rise to claims for recognition of people with disabilities in terms of cultural citizenship (e.g. Longmore 1995), similar to those based on, for example, ethnicity or sexuality. (Turner 2006; Lister 2007) Such claims are concurrent with the idea that ‘citizenship is not just a legal status, but also a dynamic field of cultural engagement and contest’ (Mills 2012, 87).

This is especially so in relation to deafness, where hearing status currently plays a small role in the rights claims advanced by deaf interest groups (Lane 2005). Many deaf people do not consider themselves disabled but rather members of a linguistic minority in which communication in sign language is the ultimate marker of cultural status (see e.g. Davis 2002). According to Emery (2009) however, citizenship to the state is generally associated with the use of spoken language – and thus based on the presumption of a hearing individual as the norm. The author criticizes that social policies resulting from this conception of citizenship disregard sign language and exclude deaf people. It is no surprise then, that the recognition by states of sign languages as official languages is seen as an important condition for the acceptance of deaf people as equal citizens and has been high on the agendas of deaf interest groups worldwide (De Meulder 2015). This is certainly the case in the Netherlands where such recognition by the Dutch government is slow to be realized. As a board member of the Dutch Deaf organization Dovenschap recently stated in the press: ‘Recognition of our language for us means full citizenship […]. Then we would also belong.’⁶

In their struggle to be seen and taken into account, deaf activists fight for accessibility, for the right to be different but equal citizens. In that sense deafness, like disability, ‘represents an important terrain for the theoretical challenge of addressing the tension between citizenship’s universalist promise and the recognition of difference’ (Lister 2007, 54). How processes of in- and exclusion take place, and which difference and sameness counts for whom, when, and where, highlights tensions in the way in which citizenship takes shape. If citizenship is not understood simply in terms of the formal relationship to the state, but ‘as a more total relationship, inflected by identity, social positioning, cultural assumptions, institutional practices and a sense of belonging’ (Werbner and Yuval-Davis 1999, 4), how then, does one become a citizen? We will explore these questions in relation to the deaf who provide a particularly interesting example of social group formation, where claims to specific social as well as cultural status for deaf people are at stake.

Belonging through the body

As stated above, for many people deafness primarily evokes a sensory disability, a physical defect associated with medical practices of diagnosis, treatment and care. In countries like the Netherlands where care is highly organized and institutionalized, deafness is usually first identified in medical practices of neo-natal and youth screening. The deafness label thus acquired gives access to treatment (e.g. cochlear implantation), care (e.g. rehabilitation programs, consultation for parents), social provisions like education (e.g. deaf schools, speech therapy), technology (e.g. alarm systems, hearing aids), special services (e.g. sign language interpreters, deaf mental health care, social work for the deaf), state financial support, etc. Here we see that bodily definitions of deafness give access to the care and provisions that to varying degrees enable inclusion in state citizenship. Access to all that citizenship to the state entails, is maintained through this particular deaf subjectivity, grounded in the physical body.

This can be seen as another example of how the physical body has become the place displaying the particular kind of truth required to prove eligibility for certain social rights (Fassin and d’Halluin 2005). However, although the physical body is central in such professional practices, and (para-)medical knowledge and technology are seen as universally valid, the deaf subjectivity enacted here is one of many. We view bodies as sites where inner worlds (e.g. mental processes and emotions) and outer worlds (e.g. bodily appearances and body techniques) meet in habitual practices, be they personal, institutional or socio-cultural. Subjectivities always presume bodies (at least in our cosmology) and are enacted through the multiple practices related to them.

Yet despite the dominance of medical classifications to claiming citizenship and its related rights in welfare states such as the Netherlands, medical practices and categories are often not what deaf people refer to when articulating deaf subjectivity. Other deaf subjectivities are articulated and enacted through practices that consciously depart from a foregrounding of physicality. For a better understanding of different kinds of narratives of deafness, some historical background of the rise of deaf consciousness is needed.

deaf/Deaf belonging

It is impossible here to do justice to the complexities of deaf history, but two specific domains are central to the rise of an international deaf consciousness and of deaf citizenship. One of these is education. In line with the emphasis on the importance of schools in citizenship formation (Marshall 1950), deaf scholars have indicated the primary role of deaf education for the history and development of deaf people as a socio-cultural group (Rietveld-Van Wingerden and Tijsseling 2010; De Meulder 2015). The other domain is that of linguistic research on sign languages (Lane 1989).

In the Netherlands and beyond, sign language was rejected as a proper means of communication for the deaf for much of the twentieth century. It was usually banned from deaf schools while children were forced to learn to speak and lip-read spoken Dutch. The schools were mainly residential and the children made infrequent visits home where signing was also problematic since almost all deaf children are born into hearing families. It is no surprise then that the communication policies of these institutions, and the ideas and regimes behind them, have greatly impacted the experience of deafness for these children.

Most elderly deaf people now living in the Netherlands were educated in such institutions and ideologies. For them, the pervasive importance of school experiences as part of their subjectivity is striking from the first question they usually ask one another: ‘SCHOOL WHERE?’⁷ (Tijsseling 2014) Consequentially, shared experiences of patronization, social exclusion and stigmatization figure prominently in the narratives of elderly deaf articulating deaf subjectivity.

Linguistic research of sign languages that showed them to be full, natural languages (Stokoe 1960) has also been important in deaf people’s positioning as a distinct socio-cultural group and corresponding claims to citizenship. This work gave impetus to a more cultural conceptualization of deafness as opposed to the dominant medical view (cf. Tijsseling 2014), informing how deaf organizations and individuals positioned themselves (e.g. Padden and Humphries 1988).

In the UN Convention on the Rights of Persons with Disabilities, the rights of deaf people were eventually formulated separately in terms of linguistic rights (De Meulder 2014). Sign language⁸ had come to be seen as a ‘prerequisite for [their] enjoyment of many human rights’ (Haualand and Allen 2009, 9) and central in deaf people’s claims for equality (Murray 2015; De Meulder 2014).

What constitutes the central markers of deaf subjectivity is a matter of ongoing discussion among scholars in the field of Deaf Studies (De Clerck 2010). Common in their contributions, however, is a thorough rejection of a medical model of deafness. Moreover, trying to resist the negativity of a physical hearing loss, Deaf Studies scholars proclaim a ‘Deaf gain’ (cf. Bauman and Murray 2010).

Trying to theorize the essence of Deafness, deaf scholars engage in discourses of sameness and of difference in which an ‘ideal’ deaf subjectivity seems to emerge as distinct from non-deaf subjectivities in ways other than hearing status. However, with reference to ‘initial feelings of unease about the failure of boundary work around these [d/Deafness] categories’, Friedner (2010) calls attention to power processes at play in the intertwinement of the d/D categories of Deafness. At the same time, deaf scholars have increasingly criticized references to the deaf community as a uniform category (Monaghan et al. 2003).

While juxtaposing ‘deaf’ as a medical category and ‘Deaf’ as a socio-cultural category may be of scholarly relevance, such demarcations dissolve in daily life practice, where people and institutions draw on multiple meanings of deafness and the possibilities they enable. Lane describes the conundrum in which deaf people must effectively subscribe to the medically deaf subject position to gain their rights in ‘access to information, education, and other areas’ (2005, 297). Understanding this through the prism of citizenship studies, deaf people must perform a deaf subjectivity that is based in physical attributes in order to claim and utilize rights of citizenship. Nonetheless, this does not necessarily undermine other possibilities of deaf subjectivity. Rather, it shows how deaf subjectivity can involve intersections between various notions of deafness in which medical categorizations (in terms of decibel hearing loss), body techniques (of speaking or signing for example, cf. Mauss [1936] 1973) or ways of being and behaving (e.g. touching to draw attention, facial expression) come together in daily practices, enacting multiple deaf subjectivities.

At De Gelderhorst these different and multiple articulations of what it is to be deaf constitute a source on which the institute relies, both at an individual level and at the level of the institution, to claim and provide physical and social care for its residents.

Care at De Gelderhorst

In its 60 years of existence, De Gelderhorst has come to provide a variety of care arrangements for a broad clientele of elderly deaf. At present, some 175 residents, a sizeable proportion of the deaf elderly in the Netherlands, live there. This center for housing and care is located in the small town of Ede, reverently referred to by center publications as the ‘Deaf capital of the Netherlands,’ attracting deaf people from all over the country. It offers 81 two-room apartments for independent living, 60 care units (assisted living), 13 places for nursing care and two places for temporary (palliative) care, with plans to expand.

The way in which De Gelderhorst skillfully manages different articulations of deafness and the different claims to citizenship that they afford is key to its flourishing. In the context of diminishing institutional elderly care in the Netherlands, its financial viability depends largely on the successful articulation of a deaf subject enacted through medical practices. This fits into bureaucracies of care where deafness is classified as a disability, situated in the body, yet the resultant resources are integral to establishing space for more cultural expressions of deafness.

The body as an object of governance and policy (Petryna 2003; Rose and Novas 2005) is exemplified in the rearrangement of long-term care provision in the Netherlands. Patients have become consumers who manage their own budgets (Kremer 2006) or care packages, determined by a central government agency (CIZ). They assess bodies and classify them into different categories of needs, based on medical advice and standard classification schemes. People with disabilities of the senses, where deafness is categorized, are among those awarded the most well-funded ‘packages’. If a deaf elderly person suffers from a chronic illness requiring residential care, they are placed in the highest care category and entitled to a larger allowance than a hearing elderly person with the same chronic condition. The extra finances of the ‘auditory package’ are granted due to the enactment of hearing impairment through medical practices. Here we see how a medical enactment of deafness comes to dominate when its articulation is integral to accessing care. De Gelderhorst is able to maintain itself by claiming these most profitable categorizations for its residents. Staff members sometimes have to negotiate with the CIZ for a new resident’s re-indication from, for example, a ‘regular intensive care’ category to ‘intensive care with an auditory package’. In such negotiations, deafness is explicitly presented as a disabling, physical condition, making care in a regular nursing home impossible. Social workers of De Gelderhorst argue that only their specialized care permits deaf elderly to enjoy the same quality of life as hearing peers. Equal enjoyment of the right to elderly care to which Dutch citizens are entitled depends on this enactment of deaf subjectivity based in the body. In order to claim resources for such specialized care, a deaf body classified according to medical categories is thus enacted in bureaucratic practices.

Yet this deaf subject is strikingly different from the kind of deaf subject that De Gelderhorst aims to attract. In its mission statement, the institute refers to its target group as Deaf people (capital D) as an emancipating group with its own language and culture.⁹ According to staff, the most important qualities for inclusion in the Gelderhorst community are ‘deafness’ and communication in sign language. This idea of a model deaf resident echoes Deaf activism’s emphasis on sign language as central to the struggle for social equality. As mentioned above, sign Language of the Netherlands is the center’s in-house language and all staff members are required to sign at a certain proficiency. The transparent building, with its glass front and elevators and its corridors with long lines of vision, is especially designed for deaf residents. Visual communication technologies are installed in communal areas as well as apartments. De Gelderhorst thus aims to cultivate a Deaf space (Gulliver 2009; Kusters 2011), a place as well as a practice, in which deaf people are equals among themselves and citizens of the institution. They are offered specialized care in a deaf-friendly and understanding environment and setting. But care here stretches further and explicitly includes positioning the residents and De Gelderhorst itself in the international Deaf community.¹⁰ Special events are organized in the center, sometimes with deaf presenters and performers, sometimes with hearing guests and interpreters (e.g. a debate between candidates for the municipal elections, or a discussion about homosexuality and old age). At the same time, the ‘outside world’ is made as accessible and deaf-friendly as possible: an interpreter service is available to all while sign language classes are attended by nearby shopkeepers and local medical professionals. Furthermore, De Gelderhorst links up with important Deaf cultural events, from demonstrations to festivities. They even organize presentations by the residents at international congresses of the World Federation of the Deaf and an informative and cultural program of the National Deaf Elderly Day, typically attended by approximately 80 per cent of deaf elderly in the Netherlands.

De Gelderhorst thus evokes deaf subjectivities enacted through both medical as well as cultural practices in a context of care. In this way, it brings together distinct forms of citizenship based both on the body and on culture. The center is thus involved in the interpellation of different kinds of deaf subjectivities which can, but do not necessarily, intersect. These subjectivities are articulated to attain different citizenships and the different goals, benefits and rights that they offer, as the following stories show.

Practices of in- and exclusion

Mrs. Z.: deafness and daily life practices

Mrs. Z. is a woman in her late 80s who had lived in the independent housing of De Gelderhorst for some eight years when we first spoke to her. She has been profoundly deaf since birth, went to a deaf school in her early youth, married a deaf man, and they made a good living as farmers. When the farm was taken over by one of her four hearing sons, Mrs. Z. – her husband had passed away in the meantime – moved to a bungalow in the nearby village. She gradually became more and more dependent on help. ‘I couldn’t do the back garden anymore, nor the front,’ she tells us referring to her daily practices, ‘I felt I should go to a care home.’¹¹ Her reference to not being able to keep up with the practices she considers part and parcel of living one’s life and belonging to the country village community echoes the reasons other informants mentioned for moving to De Gelderhorst. For Mrs. Z. as for them, it is old age rather than deafness as such that catalyzes their move to the care offered by the center.

Almost all the people we talked to have been deaf all of their lives and do not experience deafness as a rupture. Rather, it is their age that has diminished access to certain daily life practices and forms of social citizenship around them. Declining participation in work, sports or village life, for example, effects the availability of particular forms of subjectivity. While these practices fall away, deafness remains a significant identifier. Indeed, we can see how Mrs. Z.’s articulation of deafness intersects with other narratives in her explanation of the dilemma faced in choosing a care home: ‘Where to go? To the care home in the village … ? I had lots of contacts with hearing people there, friends, I still have them … no problems whatsoever. […] But when you grow older, and they also grow older, they start to mumble and you can’t understand them anymore. So then I thought: I don’t want to go to a hearing home.’ Mrs. Z.’s reference to her deafness thus relates to life cycle practices of old age (mumbling). In that sense, it is not unlike that of other informants, who – often in more negative terms of being ‘fed up’ – expressed feeling tired of having had to adapt to hearing people all their lives. What is particular to Mrs. Z. though, is that she hardly knows any sign language. In her youth, her parents discouraged contact with other deaf people and in her adult life, living in a village amidst hearing people, she always communicated by speech and lip reading, even at home with her equally profoundly deaf husband.¹² Precisely this made her move to De Gelderhorst problematic, as she lacked an important practice of belonging to the center’s community. When she spoke up in our residents’ focus group, she had been living in the center for several years already. Composed, but with emotion, she referred to her move as painful. ‘Sometimes I don’t like living here … I’m always pestered for not signing enough, it makes me sad.’ Indeed, one of the other deaf elderly in the group remembers: ‘When you just came here, my husband said to me: ‘Don’t go talk with her, she can’t sign. Why is she living here? She should go to a hearing home.’ Other participants in the focus group filled in with reprimands: ‘with deaf people one signs, with hearing people you use your voice!’ So while Mrs. Z. had been admitted to De Gelderhorst, her fellow residents were doubting whether it was the right place for her: she is deaf, but not deaf enough. Or rather not deaf in ways that are important to the specific cultural deaf citizenship of De Gelderhorst.

Yet, while they excluded her on the basis of a normative deaf subjectivity, there still seemed scope for inclusion: ‘Why didn’t you say you couldn’t sign?’ one of the other focus group participants remarked, ‘that is really sad, I feel bad now.’ When Mrs. Z. then told them how she was forced to grow up as-if-hearing, pushing herself to the limits, the others recognized what many of them had experienced themselves or knew from friends and sympathized: ‘How terrible!’ Moreover, a more desirable deafness seemed imminent since Mrs. Z. expressed a willingness to learn better signing despite her arthritic hands making it painful. While the cruel comments of her fellow residents seemed to suggest otherwise, they were prepared to take her in because ‘we deaf people have to help one another.’ In other words, they recognized the similarities in one another’s experiences of deafness, which, with some negotiation, was enough to ensure citizenship of De Gelderhorst, though perhaps not complete social inclusion.

These similarities include the shared bodily identification of non-hearing, while at the same time cultural narratives of deaf subjectivity – such as shared memories of oppressive schooling – are also important in enacting the deaf subjectivities which are considered appropriate to residents of the center. These different deafnesses come together in deaf citizenship at De Gelderhorst. Moreover, we can see here how citizenship is not stable, but an evolving process. Many of our informants referred to a learning process when talking about their own or other residents’ attempts to satisfy expectations of how to belong at De Gelderhorst. This sometimes was related to deaf practices such as adapting to variations in the signs used, to exclusive networks organized by school background, to the fact that the signed conversations are visible and can be ‘overheard’ in the open public spaces of the center. Gossip, a characteristic of all small communities where people know one another, was often mentioned as a specific phenomenon of deaf sociality and something one would have to adapt to and learn to live with, especially in a small-scale, all deaf setting like De Gelderhorst.

Learning to be an accepted member of De Gelderhorst and to profit from its provisions also correlates with more general practices of care homes, like living in a community of elderly of whom many have chronic conditions. Obviously, not everybody will be happy in De Gelderhorst. However, thanks to institutional policies and a sociality of deaf people, it represents a ‘Deaf space’ (Gulliver 2009; Kusters 2011) in which people are willing to inform one another and to learn how best to live a good deaf life away from the hearing world.

Mrs. Z. exemplifies formative aspects of deaf citizenship, where developing certain practices of deafness facilitates belonging. One year after first meeting her at the focus group discussion, we spoke again in a personal interview. In that past year, Mrs. Z. had joined residents’ protests following a managerial crisis at De Gelderhorst¹³ and she told us that things were much better now. She had more contacts with fellow residents and had learned to sign better. By demanding certain rights through this protest, Mrs. Z. felt a greater sense of belonging to De Gelderhorst community. Engaging in deaf practices, doing deafness and learning to be deaf in the right way for De Gelderhorst had brought about a changed sense of subjectivity.

Mrs. G.: deafness and cultural practices

Mrs. G. had been a resident of De Gelderhorst for some ten years when we visited her. She told us about her traditional married life – ‘As a wife you have to be obedient’ –, moving from one town to another with her husband, bringing up their two hearing children. Her husband is also deaf and it is his physical condition that brought them to De Gelderhorst. Mrs. G. herself, at the time only in her 50s, was hesitant: ‘My son said: “why, mama? You’re still young!” […] I didn’t really want to go, but my husband had a different view […] Moving to De Gelderhorst turned out to be a nice solution. […] It’s a good place and easy to make friends.’ The fact that Mrs. G. started to feel at home at the institution can be attributed to the form of deaf citizenship fostered by De Gelderhorst. The deaf subjectivity and expected practices propagated by the center in its expectations of citizenship appealed to Mrs. G., particularly the communication in sign language: ‘My language! Everybody who works here is obliged to learn it and if they don’t, they have to leave.’ Mrs. G. became deaf at the age of seven and had already learned to speak and read Dutch, managing well in the spoken language. However, she was ‘fed up with hovering between “the hearing and the deaf world”, all the time asking: “what did you say? What are they talking about?” […] When I grew older, I didn’t want that anymore and so I am in the deaf world, here I feel at home. […] In the deaf world, everyone can sign and that ensures equality. […] I can relax there, lean back. […] That’s why I made that choice. […] In sign language, I can develop myself. I understand everything … that’s the difference.’ Mrs. G.’s mention of equality is significant. It is through differentiation and separation from the wider society based on a deaf subjectivity, that Mrs. G. experiences herself as an equal citizen. This feeling is neither unique nor new. As a resident of De Gelderhorst stated to a local newspaper in 1993 already: ‘Finally my deafness is not a handicap anymore’ (Van Veen 2013, 72).

Mrs. G., in her narrative of equality and personal development, articulates a deaf subjectivity that correlates to the sort of cultural citizenship that De Gelderhorst promotes for its residents. She has strong opinions about deaf people’s possibilities in the hearing world: ‘It is always us having to make the effort, never the other [hearing] side. […] Integration doesn’t work, because the hearing are stronger than we are. And they are the majority. The deaf will always be behind as a group, they are not assertive enough to achieve something.’ To her, De Gelderhorst provides possibilities for growth: ‘At first, people have to get used to things, but then … I’ve seen people flourish here. […] Many deaf don’t realize how much they would be bystanders in a hearing home.’ Mrs. G. herself is not a bystander; she has become an active member of the client counsel of De Gelderhorst and played an important role in the aforementioned conflict between the management and the Board of Governors of De Gelderhorst. The future of the center as a home especially for deaf elderly had been at stake and was ultimately ensured, not least due to the protest actions of residents: ‘You have to show yourself because otherwise the hearing will be the ones deciding again … We will be patronized again, and then I get rebellious, really angry.’

Referring to past memories of suppressive ‘hearing’ regimes, a source of deaf subjectivity, Mrs. G. refers to a Deaf identity, but explains that she had to discover it first: ‘Deaf is my identity, but I wasn’t conscious of it … hadn’t learned it. You weren’t aware you had a language. That only came later.’ Referring to her participation in deaf activities, social work, and sign language classes, Mrs. G.’s explanation shows that it was not simply giving up one kind of citizenship (in the hearing world) and taking up another. Rather, her deaf subjectivity evolved in relation to and parallel with practices of deafness and, in particular, of rising Dutch Deaf activism. Once embraced, it provided possibilities for growth, similar to what she now describes in fellow residents. It brought her sources for articulating a different subjectivity. Her role as a prominent deaf spokesperson in De Gelderhorst, for example, contrasts starkly with her docility as a housewife. Practices of Deaf activism in the institution have been central to Mrs. G.’s enactment of a certain deaf subjectivity and thus citizenship. The case of Mrs. G shows how De Gelderhorst can be seen as ‘a site of citizenship’ (Isin 2009, 370) where practices of deafness enact citizenship at both the individual and political level. Her engagement with these cultural and political practices can be understood as part of a process of becoming and recognizing herself as a Deaf citizen.

Mrs. G.: deafness and medical practices

Mrs. W. is distinct from the majority of our informants in that she considers herself a deaf subject, insisting that her deafness makes her eligible for membership of the Gelderhorst community, to the disagreement of others. On the waiting list of the center, she is struggling to argue her qualification for residency with the social workers who first assess candidates. Mrs. W.’s deaf subjectivity is centered on the physical body and enacted primarily through the medical practices and classifications that De Gelderhorst uses to claim resources. She too uses this articulation of deafness in her claim to care and the provisions it affords. However, unlike the rest of our informants, Mrs. W. has not been deaf from an early age, but, as she tells us, ‘will become fully deaf in just five years’. Unlike most at De Gelderhorst, impending deafness, rather than old age catalyzed her interest in moving. She uses a medical, bodily narrative to describe imminent deafness, which coincides with the medically deaf subjectivity that De Gelderhorst and many deaf people rely on to access care resources and facilitate citizenship to the state. She experiences deafness as a loss (‘you can’t hear birds whistle anymore’) and talks about it in terms of a disability, a rupture with the life she was used to, requiring major rearrangements: ‘For blind people you have blind things, for deaf people you have deaf things, like De Gelderhorst. […] I’m going deaf, so I decided to go and live there.’ She is extremely anxious about ‘becoming deaf’: ‘Sometimes I feel frightened, because I wouldn’t be able to hear things, like a break-in. […] I worry about the future … going around as a deaf woman.’ She describes deafness as something traumatic, telling us ‘if you’re deaf, then everything stops … I think it is very difficult’. When she says that being deaf means that ‘you miss a piece,’ it is almost as if we are hearing the sentiments Deaf activists and scholars have fought against in promoting the ‘Deaf gain’ (Bauman and Murray 2010) of language, community and culture. De Gelderhorst uses these articulations of deaf subjectivity to attract a particular clientele and to create a unique space of belonging and social care; a space where they feel Mrs. W., with only her deafness enacted through medical practices, does not fit. The social workers responsible for the admission of new residents have tried to dissuade her from entering De Gelderhorst, asking skeptically: ‘Don’t you think it would be difficult for you here? To us it doesn’t seem like the best idea for you to live here.’ Mrs. W., however, finds that there is ‘a place for you … among people who are just like you.’ She is not apprehensive about differences with people whose practices of deafness are very different to hers, attributing potential difficulties to deaf people’s unwillingness to accommodate her: ‘Making contact is difficult for them, so that’s their fault, not mine.’ Through some experience with residents of De Gelderhorst, Mrs. W. feels excluded, telling us ‘the deaf don’t invest in the hard of hearing … They’re not so friendly at all, they live in their own world.’

Mrs. W.’s complaints that deaf people do not slow their signing or write on paper suggest that she does not know the history of oralism that left many elderly deaf people embarrassed about their unruly writing. Moreover, she is unaware that sign language is not universal and while referring to her own anticipated exclusion, she finds it hard to imagine the stigmatization deaf people have had to cope with all their lives. Mrs. W.’s experience of deafness is thus lacking in the shared history, the everyday life practices and the tacit knowledge (cf. Polanyi 2009 [1966]) that go with such lives. While her narratives of non-hearing intersect with a biological deaf subjectivity common to all of the residents of De Gelderhorst, it falls far from other aspects of deaf subjectivity they share. She may be losing her hearing, but that is not enough to become the right kind of deaf subject for De Gelderhorst. The practice of placing herself on its waiting list is nonetheless a decisive claim to citizenship. Yet, Mrs. W. is not unaware of other articulations of deafness that do not intersect with hers and may result in her exclusion. She introduces the term ‘worlds’ herself, saying, ‘I think there is a world of difference between the hearing world and the deaf world. And the hard of hearing. And I am there in the middle, between the two … Here, between the two, you have nothing.’ Her claim to belonging is partly based on her insistence that she can no longer belong anywhere else: ‘If I can’t go there, then where can I go?’, she asks plaintively, affirming literature that suggests that not-belonging is often integral to establishing boundaries of belonging (Wright 2015). She is less and less able to join in the shared practices of the elderly in her community, less able to hear the bingo numbers in her local elderly center, as well as conversations with friends and neighbors. Here we can see that Mrs. W., while ageing, does not easily fit into regular care arrangements for elderly people because of her diminished hearing. And so she is doing what she can to fit into one world, learning the practices that she thinks will qualify her to claim citizenship of De Gelderhost and thus access its care and social inclusion. She takes sign language courses and goes to dinners with new friends at De Gelderhorst restaurant and tells us she has learnt, for example, that you should not tap a deaf person on the shoulder unless they have seen you, otherwise you will give them an enormous shock. Mrs. W., aware that she is not the right kind of deaf for De Gelderhorst, is learning the practices that she hopes will allow her to belong as a citizen of De Gelderhorst, affirming the literature that speaks of belonging as a basic need that people actively try to fulfil (Yuval-Davis 2006; White 2015).

Mrs. W., like the other two examples we discussed here, shows us how wanting to belong can be an effort, a painful desire, the other side of exclusion. Her efforts to become the kind of deaf subject who can claim elderly care and belonging at De Gelderhorst reminds us that subjectivity is something that becomes rather than a static pre-given. In order to become a deaf subject in the ways required to access certain rights through citizenship of De Gelderhorst, physical deafness is not enough. It requires learning of language, of culture, and of the small practices that those who have grown up within deaf culture may take for granted.

Conclusion

In analyzing multiple versions of deaf subjectivity as enacted through practices situated at De Gelderhorst, it can be tempting to simplify by imagining two poles of ‘deafness.’ On the one end we might have the biological (little d) deaf, which gives access to rights via the medical practices authorized to categorize bodies and determine their needs. At the other end of the spectrum we might have the culturally (capital D) Deaf person, interpolated by De Gelderhorst mission statement and practices of in- and exclusion by De Gelderhorst residents and staff. Yet such ‘paralyzing oscillation between medical and social definitions, inhibit[s] concentration on the constitutive dimension of what it is, in fact, to be in these conditions’ (Hennion 2017, 113): that is, of the various experiences of deafness. Instead of forcing our three cases into a continuum, we can consider how these different experiences of deafness do not oppose one another but rather form the conditions for different forms of d/Deaf citizenship.

The care, both social and medical, that De Gelderhorst is able to offer relies on the coming together of different deaf subjectivities, enacted variously in an intersection of medical, cultural and daily life practices. Considering the sources and practices that lead to different deaf subjectivities and how they are, or are not, included, moves us from asking what a d/Deaf citizen is, to asking how citizenship is maintained through De Gelderhorst. The center thus facilitates citizenship claims addressed to the state – through specialized state financed care packages – as well as citizenship claims to the community through practices of inclusion and exclusion. These two avenues of citizenship are crucial to the success of the institution and are involved in the enactment of multiple deaf subjectivities.

Mrs. Z. shows us how old age diminished her access to certain practices – that were sources of activity and identity – leading her to exchange her place in the hearing world for De Gelderhorst. She learns, however, through power processes at play in practices of in- and exclusion among residents, that communication in sign language is integral to becoming the kind of deaf citizen who is included at De Gelderhorst. In her desire to belong, she is willing to endure the pain of her arthritic hands to learn to sign, showing her commitment to enacting a particular form of deaf subjectivity. Her ability to strive towards inclusion, however, resides in her expression of other forms of deaf subjectivity. Like everybody at De Gelderhorst, she experiences biological deafness, and like many of its residents, she shares a history of repressive schooling. These conditions lead other residents to accept that she is one of them, albeit one who still needs to learn. Mrs. G. too, decisively chose the Deaf world over the hearing one, finding that it is only in this separation that she experiences equality. Her relief in the practice of signing, of communicating in the same way as everyone else and her energetic engagement in deaf activism have all contributed to enacting Mrs. G. as a deaf citizen, or, as she describes it, have made her conscious of her Deaf identity. Her emergence as an activist Deaf citizen calls into question the givenness of that body politic and opens its boundaries wide (Isin 2009). Through practices of activism, both Mrs. G and Mrs. Z. are not only defending deaf citizenship but also engaging in a personal process of becoming deaf citizens, while shaping deaf citizenship at a political level. Mrs. W.’s deaf citizenship, however, is contested, at least by those at De Gelderhorst. She sees her imminent loss of hearing as reason to be accepted at De Gelderhorst. Yet this citizenship defined in medical practices is not all that is required at the center. While she is aware that she is ‘not the right kind of deaf’ to belong, she also demonstrates how different versions of deafness co-constitute one another. In De Gelderhorst, while bodily deafness is not enough to belong, it is a necessary condition for other aspects of deaf subjectivity and citizenship, in part because it is crucial to securing financial provisions. Similarly, practices of cultural citizenship, such as signing, are not enough to claim deaf citizenship at De Gelderhorst. Rather, it is through the interaction of different forms of deaf subjectivities and the shifting practices that underlie them that one becomes a deaf citizen. Like Mrs. Z., Mrs. W. is also engaged in learning practices of deafness including signing and deaf etiquette, though her acceptance at De Gelderhorst remains in doubt.

All three cases show citizenship as a process of becoming, evolving in daily practices and shared experiences that enact multiple deaf subjectivities. The deaf citizen expresses (or embodies) different versions of deafness that sometimes clash but more often co-constitute one another. Like Kusters and De Meulder. (2013, 432), we would like to suggest Deafhood (cf. Ladd 2003) as a process of becoming. Our three cases illuminate how De Gelderhorst, by creating a space, conditions of belonging and a particular form of care, also molds the subjectivities of its residents and their claims to citizenship. In the context of De Gelderhorst, processes of becoming a citizen are driven by the needs for care, a space of safety and relative autonomy, and often by a longing for social inclusion. It is a space to be different yet equal. Care, resources and social inclusion rely on the enactment of different types of d/Deaf subjectivity which can be done differently, at different moments, for different goals.

Acknowledgments

We thank the editors of this special issue, anonymous reviewers and Stuart Blume for valuable comments on versions of this paper.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Notes on contributors

Anja Hiddinga

Anja Hiddinga is a senior researcher at the Department of Anthropology of the University of Amsterdam, The Netherlands.

Maja De Langen

Maja de Langen Farrell is a PhD candidate at the Department of Anthropology, University of Amsterdam,  The Netherlands.

Notes

1. We are aware of the (politicized) discussions regarding deaf/Deaf distinctions. We have tried to reserve the capital D to refer to deaf people, organizations, or activities that self-consciously identify as part of a cultural group.

2. All interviews were done by the first author in Sign Language of the Netherlands, spoken Dutch or a mixture of both, depending on the respondents.

3. The World Federation of the Deaf, founded in 1951, aims to ‘ensure equal rights for 70 million (deaf) people around the globe.’ https://wfdeaf.org/who-we-are/(accessed March 5 2019). The European Union of the Deaf was founded in 1985 with the aim ‘to represent and promote the interests of Deaf Europeans at European Union level […] to ensure they can become full citizens in their own right.’ https://www.eud.eu/statutes-internal-rules/(accessed March 5 2019).

4. https://www.dovenschap.nl/missie/(translation by the authors; accessed March 5 2019).

5. This is the first meaning of deafness in the main dictionary of the Dutch language. Van Dale Groot Woordenboek der Nederlandse Taal. 15^th ed. Winschoten: VBK Media (2015).

6. https://www.nemokennislink.nl/publicaties/erkenning-van-onze-taal-betekent-voor-ons-volledig-burgerschap (translation by the authors; accessed 22 February 2019).

7. ‘Where did you go to school?’ In sign linguistics, it is conventional to capitalize signed utterances in writing.

8. Sign language is not universal. Currently the Ethnologue lists 137 sign languages worldwide.

9. De Gelderhorst Jaarrapporten [Annual Reports], e.g. 2015, page 4.

10. ‘Our knowledge center inspires the Deaf world … ’ https://www.gelderhorst.nl/over-ons/missie-visie-doelstelling (accessed 24 February 2019).

11. Quotes are translated as directly as possible from Dutch by the authors.

12. Speaking should be taken as: producing sounds using breath, lips, tongue, vocal chords etc. Usually it takes time for a hearing person to learn to hear what is being said by a deaf person. In our interviews with Mrs. Z, her spoken language was almost impossible to follow.

13. We have described and analyzed this conflict in some detail elsewhere (Hiddinga Forthcoming).