I argue that women like Sabine challenge the imperative to know and act based on probabilistic knowledge, refusing self-management, and the privatization of risk by continuing with testing and, if need be, terminating the pregnancy. Instead, the uncertainty of her unfolding pregnancy occupies center stage. Certainty herein lies an embodied practice of knowledge. Sabine cannot even speak of testing without referring to her child, who might have been aborted. Women like Sabine have become acutely aware of NIPT as a matter of "testing and avoidance". If the experience of an unburdened pregnancy is at the forefront, NIPT adds the uncertainty of the possible decision to keep or abort a (handicapped) child. There are other narratives of women saying they wanted to know in order to prepare themselves, but the more common view of NIPT as an element in an ecology of testing practices leading to abortion is also based on estimates from experts that nine out of ten fetuses with DS in Germany are indeed aborted (ÄrzteZeitung 2017). In Germany, under certain circumstances, abortion is permitted throughout the pregnancy, and is covered by insurance. Abortion is tolerated in Germany for the sake of the physical and psychological integrity of the pregnant woman, which could be endangered by a disabled child. In other words, disability is used as an indirect justification for abortion.6

Within a logic of caring for the ongoing pregnancy, NIPT introduces uncertainty and burdens pregnancy with negative emotions. The finding that highly educated women did not "understand" the "probabilistic" nature of NIPT could be interpreted as reflecting poor counselling. However, drawing such a conclusion would fall short of my aim to understand NIPT in constructivist terms, i.e., to reject scientific claims and understandings as the only rational and objective "truth", whereas all other discourses are based on false "belief ". If we treat scientific and experiential claims symmetrically, and seek to understand each claim in the specific context of its actual, concrete practices, we could also argue that women are required to "de-script" (Akrich 1992) the meaning of NIPT, untie it from its intended use, and re-inscribe a new meaning.

By answering "you know what you are going to do", but warning that "it is always different" after receiving the test result, women like Sabrina remind us of the very complex nexus of life plans, ideas and ideals of family life, expectations of a healthy child, of what the parents think is desirable, and what is possible for them in society. Pregnancy, these women remind us, cannot be thought of in isolation, abstracted from the real world in which the test is available. Nor can NIPT be considered in isolation from the world in which the child might live. NIPT and its milieu interfere with each other, obliging practitioners to engage in certain other testing or caring practices.

For Sabrina, having a child with DS obliges her to see NIPT as a test that would deprive her existing child of legitimacy, dignity, and the right to live. Testing prac-

6 In Germany, abortions are formally prohibited without medical indication (§218 SGB). However, they are not punishable and are tolerated under the caveat of compulsory counselling, and if they are carried out within the first 12 weeks of pregnancy, which accounts for 96% of the abortions recorded between 2012 and 2022 (DESTATIS 2023). Abortions on medical grounds are covered by health insurance and are permitted throughout pregnancy.

tices, as I have argued, are not just about actions, but also about values and relationships. Because of the commitment to a child that progressively affirms itself, the timing of testing with NIPT is a matter of concern for Sabrina. Early testing would not allow a child to affirm itself.

Expectant parents must position themselves for a possible future that has not yet been mapped out. Choosing uncertainty does not mean that they deliberate less carefully, but that they have different attachments and obligations than in their previous actions. For Dorothee and Sabrina, the attachment is to an already born child and to their existing family. For both women, NIPT, with its probabilistic certainty and clinical non-invasiveness, forms a different element in their respective ecologies of care. The two women profer different responses to the offer of "knowing more" through NIPT and the routinization of testing during pregnancy. However, if we agree with Mol (2008: 75) that what constitutes "good", "worse", or "better" care does not precede practice but is rather an integral part of it, something to be negotiated within the situation or tinkered with as contingencies arise, then both logics are equally valid ways for women to care for the child to be born and the family into which it is to be born.

In some respects, the test for DS might be seen as more than just "seeing what is about to be born" (Löwy 2018). Parents are required to evaluate NIPT in the context of the world into which their child will be born, which are altogether different for Sabine and Dorothee. In this sense, women are more than just "moral pioneers" (Rapp 2000): they are field testing NIPT—with all its implications and obligations—for a society in which technological advances are continuously outpacing ethical and practical considerations.

### **Acknowledgements**

The project *Meanings and Practices of Non-Invasive Prenatal Genetic Diagnostics in Germany and* Israel *(PreGGI)* was funded by the German Research Foundation, DFG, grant RE2951/3-1 for 2017–2020. I would like to thank the project team: The PIs Christina Schües and Christoph Rehmann-Sutter, Anika König, who developed the interview guide and conducted the first half of the interviews, and Hannes Foth, Tamar Nov-Klaiman, Yael Hashiloni-Dolev and Aviad Raz for discussions and comments on ideas and drafts that led to this article. Most importantly, I am grateful to all the women and men who shared their stories with us.

# **References**

netic Responsibility in Germany and Israel. Christina Schües, ed. Pp. 307–352. Bielefeld: transcript.

# **6 "Being a Little Bit Pregnant"** Temporality and the Pragmatics of Uncertainty and Hope in In-Vitro Fertilization

*Bernhard Hadolt*

Auch Hoffnung existiert nicht in einem sozialen und historischen Vakuum, sie hat immer eine Geschichte, und die Tragfähigkeit jeder Hoffnung hat viel mit dem Konsens zu tun, der über diese Geschichte herrscht und im Austausch und Gespräch weiterentwickelt wird.

Hope too does not exist in a social and historical vacuum, it always has a story/history, and the bearing of any hope has a lot to do with the consensus that prevails about this story/history and is advanced in exchange and discussion. *(Kinsky 2023: 34, my translation)*

### **Introduction**

When my colleague Monika Lengauer and I were deeply immersed in ethnographic fieldwork for our study on how users of assistive reproductive technologies (ART) deal with these technologies in Austria (Hadolt and Lengauer 2003; Hadolt 2005), we always felt the urge to tell each other about the things that had just happened. Whether accompanying ourinformants to amedical appointment or talking to them about past events and future plans, we felt this need to share experiences whenever one of us left the field. We met at the hospital's café after saying goodbye to our informants or talked on the phone later in the evening, marvelling about the amount of work, suffering, and money users of In-vitro fertilization (IVF) put in. We were struck by the determination and dedication with which the couples we worked with worked through all required medical procedures over and over again, enduring pain and failure while pursuing their ultimate goal of having a baby and starting a family. They often invested their entire vacation time and all their savings and often risked the breakup of their partnership, all the while knowing all too well that the outcome was uncertain. Through dramatic ups and downs, pondering upon what might be the case medically speaking, pragmatically weighing up the options and imagining the—hoped for or feared—outcome of these options, for better or worse and sometimes against all odds, they maintained hope that all would turn out fine as they underwent another IVF treatment. In the one and a half years in which we followed these couples in their engagement with ART treatment, this hope has been fulfilled for some, but not for others.

Among the well-known ethnographies in medical anthropology that deal with such predicaments of suffering and uncertainty is Susan R. Whyte's (1997) *Questioning Misfortune.* Based on long-term ethnography, Whyte explores the ways how the Nyole people in eastern Uganda make sense and deal with misfortunes, such as sickness, marital problems, and death. Drawing on the work of John Dewey and other proponents of American pragmatism, she contends that Nyole respond to misfortune and the associated uncertainty with a pragmatist stance, prioritizing the actions taken to alleviate misfortune and the consequences of doing so over convictions. "For acting subjects," Whyte concludes more generally, "dealing with misfortune is a process of apprehending uncertainty, questioning experience, considering terms of action,implementing ideas, and looking to the results"; she continues: "You try, consider consequences, doubt, reconsider, revise your purpose perhaps, hope, and try again. In the process, you may never achieve certainty, though you may gain some degree of security" (ibid.: 224)—our informants could have expressed their experience in their quest for a baby in a similar way.

The situatedness and intentionality that define such pragmatics of uncertainty are also recognized in in the above epigraph. In her poetic essay *Gedankenspiele über die Hoffnung* (*musings about hope*) German writer and translator Esther Kinsky (2023) explores hope through five motions. They range, among others, from her father's induced coma after a failed heart surgery, a state "without hope", thirty years ago, to an analysis of Emily Dickinson's poem *Hope is the thing with feathers "*that perches in the soul", to a contemplation of *Hoffnung* (*hope*), the title of a poem by Friedrich Schiller. In the fourth motion—from which the introductory quote is taken—Kinsky examines Homer's Odysseus' hope for returning home when he recounts his odyssey at King Alcinous' banquet. In telling his story, Kinsky argues, Odysseus formulates a past through a retrospective present that engenders a hopeful, if uncertain, future. Significantly, Kinsky uses the German word *Geschichte* which has a double meaning, in the sense of an individual story to be told, but also in the sense of a more general history, perhaps best translated as *narrative*. The bearing of hope, Kinsky asserts,

rests on the bearing of such a double-faced *Geschichte*, which is to be socially shared and advanced as time passes to become real.

In this chapter1 , I set out to explore the stories/narratives, unfolding over time, in which IVF users (and their medical professionals as well as ethnographers) are enmeshed as situated and purposeful actors and participants in social practices related to ART along the lines of the pragmatics of uncertainty and hope. For reasons of space, I focus on the final phases of IVF treatment, embryo transfer and implantation, and leave out how hope and uncertainty play out in earlier IVF phases and outside the clinic in the homes of IVF users, in media reports, on IVF clinics web pages, in self-help groups, in ART medical tourism advertising, and in policy-making.

I start from the assumption that affects and emotions are to be understood as happening relationally between people (and between people, non-human organisms, more-than-human beings, and things) and as an intrinsic part of the social, rather than as private mental or somatic states of feeling (e.g. Ahmed 2004; Collu 2019; Reckwitz 2016; Wetherell 2012). From a praxeological perspective (Schatzki 1996; 2002), I argue that hope, as a feeling and as a power technique that makes things happen, plays a crucial role in holding together and co-ordinating the manifold doings and sayings (and by extension the involved human and non-human participants) that constitute IVF as a social practice.

### **A note on the study and its participants**

The empiricalmaterial discussedin this chapter comes from ethnographic fieldwork that Monika Lengauer and I carried out between spring 2000 and autumn 2002 as part of the above-mentioned research project (Hadolt and Lengauer 2003; Hadolt 2005).The bulk of our data relates to eight case studies of involuntary childless couples whom we followed over a period of 18 months in their quest for a child of their own by using ART. During this time, we accompanied them to their clinical appointments at the IVF outpatient clinic of a university hospital in Vienna and at other private ART clinics and visited them at home for regular interviews. My analysis in this chapter draws heavily on the analysis we conducted in this research project. It is an effort to deal with this material with a fresh look.

The female participants were between 27 and 42 years old, and the men were between 30 and 52. Apart from one couple from Belgium, all participants had Austrian

1 An early version of this chapter was presented at the XI Medical Anthropology at Home (MAAH) Conference, held at the Schüttkasten Geras, Austria, in 2021. I am grateful to the participants and especially to Andrea Stöckl for their insightful comments. The study was funded by the Austrian Federal Ministry of Education, Science and Culture (BMBWK).

citizenship. All couples had been married for at least four years. One woman and one man already had an adult child from a previous marriage; all the other people were childless and, except for one woman, had never been pregnant. The diagnosis of medical infertility varied between couples, but also over the course of ART treatment for the same couple. The informants who—among others—play the main role in this text are as follows (in the order of first appearance):

At the time of our study, *Mrs Marek*2 is 29 years old, *Mr Marek* is 34. Both come from eastern Lower Austria, where they live in a newly built house near Mr Marek's parents' house. Mrs Marek commutes to Vienna for her job in an office. Mr Marek works as a driver for a transport company.They have been married for nine years and have been trying to conceive a child for seven years. Six years ago, Mrs Marek talked to her gynaecologist for the first time about her "Kinderwunsch" ("wish for a child"), as wanting to have a child is called in Austrian discourse. After the couple had undergone four unsuccessful inseminations at a private ART clinic, they switched to the IVF outpatient clinic at the university hospital in the fall of 2000, where they completed an unsuccessful IVF cycle. Due to financial reasons, the couple switched back to the private clinic, where they underwent another two unsuccessful IVF cycles. The couple then decided to take a longer break from treatment. During this time Mrs Marek surprisingly becomes pregnant without medical intervention.

*Mrs Koller* is 33 years old; her husband is 32. Mrs Koller grew up in Vienna, where she also lives and works as a university teacher. Mrs Koller has been married for about six years and had been trying to get pregnant for four years. As her gynaecologist's advice to have "gezielten Geschlechtsverkehr" ("targeted intercourse") did not work, the gynaecologist referred her to the IVF outpatient clinic, where she underwent three unsuccessful IVF cycles before the fourth cycle results in a pregnancy. In contrast to most other couples, Mrs Koller underwent IVF treatment "single-handedly" in that her husband only came to the clinic for those appointments where his presence was absolutely necessary (for the initial consultation and for the sperm donation before the puncture).

*Mrs Salzer* is 36 years old, and *Mr Salzer* is 43. They both graduated from grammar school and work as clerks at various companies in Vienna. The couple lives in a newly built house to the west of Vienna, which they planned and built with a future child in mind.They have been married for thirteen years and have wanted a child for just as long. About seven years ago, during a routine gynaecological examination, Mrs Salzer approached a gynaecologist for the first time concerning her "Kinderwunsch." As Mr Salzer was diagnosed with "severely reduced sperm quality," several doctors recommended IVF treatment. For financial and organizational reasons, the Salzers turned to the IVF outpatient clinic, where they underwent their first IVF cycle in the spring of 2000, which was unsuccessful. The couple had two more unsuc-

2 All names are pseudonyms.

cessful IVF cycles before an ultrasound examination of Mrs Salzer revealed first a polyp and then a fibroid. Because the Salzers found the treatment at the IVF outpatient clinic very unsatisfactory, they switched to a private clinic, where they underwent their fourth IVF cycle at the beginning of 2002. This also failed. Further examinations were carried out at the private clinic, which ultimately led to the conclusion that successful IVF treatment was "very unlikely." The couple then decided not to continue with IVF treatment.

#### **IVF dramaturgy and temporal horizons**

IVF users—women as well as men—often describe their engagement with IVF treatment as something of an emotional rollercoaster that indexes the drama of their stories about having a child. Here are some of the emotional states and feelings that users experience before, during and between IVF treatment cycles: strong desire to have a baby; pressing uncertainty and puzzlement about why the "natural way" of conception (through sexual intercourse) isn't working; joyful confidence when doctors praise the "promising" follicle growth during hormonal stimulation of the ovaries; nagging envy of other people's having children "so easily", given the hard work and suffering they have already gone through; indignant deservingness of having a baby oneself; feelings of not being sufficiently supported or even betrayed by the partner who supposedly does not engage in the treatment process as whole hearted enough; devastating despair and self-doubt after a failed IVF cycle; relieved joy when a pregnancy is diagnosed; deep doubts when having to decide whether to continue ART treatment or not; panic and overwhelming fear of a (another) failure; and, not least and of paramount importance, probing hope that everything will turn out fine when finally holding one's own baby in one's hands.

Usually, both in clinical discourses and media accounts as well as in academic writing, such feelings are dealt with either as a matter of coping with the demands and suffering connected to IVF treatment, or as motivation for undergoing ART treatment, or as psychological factors which may hamper or support becoming pregnant. In any case, such feelings are seen as being external to the techno-medical procedures of IVF itself (e.g., Devonport and Lane 2013; Rockliff et al. 2013). From such perspectives, IVF and feelings are understood as quasi standing *vis-à-vis* each other. However, such conceptualizations fail to recognize the generative role that emotions and feelings have for technologies such as IVF in the first place.

To address this, I draw on Schatzki's work on social practices,in particular, what he calls the "teleoaffective structure." In his view, social practices, defined as "temporally unfolding and spatially dispersed nexus of doings and sayings" (Schatzki 1996: 89), are organized by various aspects. Among others, the doings and sayings of a social practice "hang together" through its teleoaffective structure. This is "[…] a range of normativized and hierarchically ordered ends, projects, and tasks, to varying degrees allied with normativized emotions and even moods"(Schatzki 2002: 80).These are normatively charged complexes of purposes and objectives (referring to the *telos*) and emotions, sentiments, and passions (the affective dimension) that govern which activities are regarded as "right" and/or "acceptable."

The teleoaffective structuring of IVF treatment as a social practice, I content, relies on and at the same time produces hope in important ways: hope aligns the doings and sayings of IVF treatment along its *telos*, having a hoped-for baby and becoming parents by both limiting and employing the multiple uncertainties involved in IVF treatment; hope is also nourished when one after another task necessary in IVF treatment is successfully worked off, enabling to proceed to the next.

At least two fundamental, interrelated characteristics of IVF are of central importance here: Firstly, IVF is a complex and uncertain technology that requires the concerted interplay of activities and capacities involving both technical procedures and (mostly female) bodies, yet—and depending on the individual situation—with more or less uncertain results. Both as a future possibility and as a past and current matter of fact, failure (of producing follicles, embryos, and ultimately pregnancy, to name but a few) is all too real, as IVF users painfully know after their first failed IVF cycle at the latest. When I asked Mrs Riedel (44 years-old, four unsuccessful IVF cycles) after she and her husband had stopped ART treatment, what had her impressed most during ART treatment, she replied:

The first two attempts where the implantation [nidation] didn't work, the day when I got the menstruation, that's the thing that somehow stayed with me most. Because maybe beforehand the hope is pretty high that it [getting pregnant] could work, and then suddenly there is the bleeding. That is, that is a hammer. That was absolutely <Mrs Riedel laughs> a hammer. (Mrs Riedel)

The medico-technical IVF procedures, then, are to be understood as being necessary but not sufficient for pregnancy to occur: it also requires (female and, to a lesser extent, male) bodies to be successful. The biotechnological feasibility of IVF is giving nature a "helping hand" Strathern (1992); it can only enable pregnancy and make it more or less likely, but not directly cause it. The interplay of technology and biology remains unreliable and is often mysterious, which leads to multiple uncertainties. In our study (Hadolt and Lengauer 2003: 285ff) we identified three main types of uncertainty, which we called "uncertainty-of-occurring" ("Unsicherheit des Passierens")—Will there be enough good follicles? Will the retrieved eggs fertilize? Will implantation work? etc.—, "uncertainty-of-the-actual" ("Ungewißheit des Tatsächlichen")—What is really the reason that I cannot conceive a child? What exactly was the reason that the last IVF cycle didn't work? etc.—, and "uncertainty-of-thebest-possible" ("Ungewißheit des Bestmöglichen")—What should I do to make implantation as likely as possible? Should we change the clinic for our next IVF cycle? etc. Hope tackles—and relies on—such uncertainties by maintaining the potentiality of both a positive, albeit hidden reality in the past and present, and a positive outcome in the future. As a form of "embodied meaning-making" (Wetherell 2012: 4), hope does this by embodied feeling rather than cool, detached reasoning. Hope maintains movement towards a desired future in the face of hovering failure. Hope keeps the story/narrative of IVF going.

Secondly, IVF is a cumulative technology. Lasting between four to seven weeks, and IVF cycle consists of a series of phases or steps, including: ovarian hyperstimulation to produce up to 30 eggs capable of fertilisation; the "puncture" of the follicles that have developed in the ovaries to retrieve (or "harvest" as some doctors call it) the eggs; the fertilisation of the eggs with the sperm in the laboratory and the cultivation of the resulting embryos for up to seven days after fertilisation; the embryo transfer, in which one to three of the developed embryos are transferred back into the uterus; and the biological implantation of the embryo in the uterus (nidation), the success of which can only be checked by a pregnancy test after a further two-weeks of "waiting period" at the earliest. Every individual phase must be successfully completed to at least a satisfactory degree to maintain the possibility of becoming pregnant. If one phase fails, the entire IVF cycle has failed.With a highly cumulative trajectory IVF is like a "hurdle race" ("Hürdenlauf "), or "obstacle course" (Franklin 1997), in which all hurdles must be successfully overcome to emerge victorious.

Given this hurdle race structure, IVF treatment is firmly directed toward the future. In addition, after a failed cycle, IVF users are confronted with the decision whether they should try another cycle, and then probably another one. Structured by the interplay of failure and hope, a specific procedural pathway is laid out to be followed, both within and between IVF cycles. Junctures that afford alternative routes only exist at specific points of the process (e.g., when the number and quality of follicle during ovarian hyperstimulation is low), but most importantly in between IVF cycles.

IVF treatment, in its dramaturgy of hope and failure (or success), has at least a threefold temporal configuration: First, a step-by-step configuration that highlights the next task and the next milestone at hand and follows an individual IVF cycle's cumulative trajectory. The temporal horizon for action and hope is the next step/task. Second, the overall configuration of the individual IVF course has the successful IVF cycle as its hoped-for temporal horizon. Particularly in these two temporal configurations, hope is strongly framed by the threat of future failure. One way of dealing with this is to curb hope to a "proper" extent to avoid disappointment when the IVF cycle fails. Mrs Marek said about her hopes for a positive outcome when she started her first IVF cycle:

No, I don't want to set my hopes too high, because otherwise I might be depressed afterwards, or I don't know. I'm the kind of person who can cope with something quickly or something. But I always lower my hopes. And if it does work out, I'm happy, but I don't have high hopes for the first time. (Mrs Marek)

Another reason for not committing oneself too strongly to a particular outcome of an IVF cycle is that failure is not pre-programmed by decrying it. E.g., during the waiting period during their first IVF cycle, 54 years-old Mr Riedel stated that he did not want to "talk about the bear's fur [getting pregnant] until the bear had been killed" ("über den Fell des Bären reden, bevor er erlegt ist"), because that would bring bad luck.

In the third temporal configuration, IVF, as part of the overarching project of having a child and becoming a parent, has its temporal horizon in having a child with or without ART treatment. IVF users emphasise this perspective before an IVF cycle starts or has ended, but much less so within an IVF cycle. Only after the failure of an IVF cycle do opportunities for strategic decisions arise: whether to attempt another IVF, when, in which clinic, under what circumstances, etc. Decisions must also be made during an IVF cycle, but these are largely left to the medical professionals or are based on the requirements of the next IVF step to be accomplished. Our informants experienced their decision-making options as very limited and tended to react to the medical instructions rather than actively acting; they practically never acted against the doctors' advice. In contrast, strategic planning became salient after the end of an IVF cycle, though even then people only cautiously considered plans beyond the next IVF cycle.Their considerations in this regard were not characterised by an if-then, but rather by a casual exploration of possible courses of action; "let's see" ("mal schauen"), as 38 years-old Mr Pichler often put it, when he talked about the future.

IVF users, therefore, tend to plan their quest for a child retrospectively about past events rather than prospectively. Such planning is used to lend a certain coherence to the quest of having a child and to evaluate past actions and events and give them meaning. So, while for IVF users planning that is focussed on the individual IVF cycle is prospectively limited by the possibility of failure, the experience of failure in their planning attitude in a broader sense is a kind of reflective pause to clarify the next steps and an essential element in the ways of how couples structure their stories of having a child and starting a family.

# **Embryo transfer and waiting for pregnancy**

On the biotechnical-assisted path to pregnancy, the embryo transfer, and the hopedfor implantation of the embryo in the uterus, also known as nidation, play a crucial role. Embryo transfer and implantation differ from the previous stages in several respects. Apart from the fact that implantation is the "decisive phase" in which it becomes clear "will it be something or will it be nothing," as Mrs Salzer put it, the result of the implantation phase not just concludes a stage, but the IVF cycle altogether. At the medico-technological level, the embryo transfer is the last medical act; from this point onwards, the conception process is considered as in any "normal" pregnancy, and implantation itself must be left to the "natural" processes of the female body; nothing more can be done to make pregnancy more likely. In addition, while the work and result in the stages of hormone stimulation, puncture, fertilization and, in the narrower sense, embryo transfer are characterized by their temporal proximity to each other, the result of the implantation phase, and by extension, the whole IVF cycle, only becomes apparent after a waiting period, which is about two weeks. Not least because of the high stakes, our informants experienced this waiting period, painfully characterized by inactivity and uncertainty, as particularly stressful and difficult to bear. E.g., Mrs Pichler, 32 years old, commented on the difficulties during this waiting period after her second unsuccessful IVF cycle:

On the one hand, I'm happy, on the other hand I'm afraid. [...] of the result, of the urine test [pregnancy test]. Of that, yes. Otherwise, I don't mind. It's not so bad. But the fourteen days [of the waiting period], that's a disaster. (Mrs Pichler)

One might expect that implantation and, in consequence, pregnancy is a matter of either-or, either pregnant or not pregnant. This is indeed the case, but the temporal point of view from which implantation is evaluated is crucial here. Only from an *a posteriori* perspective, when a definite and unambiguous outcome of an IVF cycle is established, does the outcome take on the binary form of either-pregnant-or-notpregnant. From an *a priori* position, however, before a definite outcome is reached, things often are not so clear; the bodily state of gestation is uncertain, and pregnancy is hopeful.This can lead to a situation in which pregnancy becomes gradable, a matter of more-or-less, and in which IFV users might feel "a little bit pregnant".

All our informants agree that a "real" pregnancy only exists when an embryo has been successfully implanted. However, since this event cannot be known when it takes place biologically, but only afterwards, by means of the pregnancy test, it is both uncertain if "it will happen" (a matter of "uncertainty-of-occurring") and if it perhaps has already happened (a matter of "uncertainty-of-the-actual"). Such uncertainty—which comes into being only through the knowledge about embryo transfer and implantation—opens a space of possibilities for understanding and experiencing pregnancy in novel ways.The embryo transfer is a central facilitator in this: having the embryo in the uterus after the embryo transfer—and being aware of it—creates an as-if pregnancy situation, because our everyday understanding of pregnancy is constituted by the idea of "baby in the womb." The fact that "having

put the embryo into the uterus" is not the same as implantation becomes sublimated via qualitative induction (a method of inference in which one property of a phenomenon is used to infer the phenomenon as a whole): "having the embryo in the uterus" becomes quasi equated "baby in the womb", even though the process leading to a pregnancy is not yet completed.

But not completely so: In particular, during the waiting phase after the embryo transfer, our informants' attitude oscillated between knowing what it takes for a "real" pregnancy and hopeful feelings concerning the potential for pregnancy in the first two weeks after the embryo transfer, being cautious and hopeful at the same time. Many of them resolve the tension by feeling "a little bit pregnant", such as Mr Lang, who told us that his wife had a "feeling of being a little bit pregnant" when she waited for the pregnancy test after her second embryo transfer. Similarly, Mrs Koller, who repeatedly emphasised in our conversations how much she had learned about reproduction from a medical perspective since she started IVF, reflects on the time after the embryo transfer in her first IFV cycle, which was unsuccessful:

Somehow you think, well, I mean that, somehow you think you're pregnant—a little bit. I don't mean that you feel it […] as in stories about pregnancies, first when you feel sick. I mean, you don't really feel the pregnancy, […] that you have a big belly, that you really experience—uh—[...] a physical experience of pregnancy, that's much later. But the thought, yes, this emotional feeling. [...]  (Mrs Koller)

Mrs Marek also reported that she felt "somehow pregnant" during the time between embryo transfer and the onset of menstruation when she underwent her first (unsuccessful) IVF cycle. She said about her behaviour during this time:

Well, when that [the embryo transfer] is over, you just walk like on raw eggs. <Mrs Marek laughs> You think: just don't move quickly! Yes, and then the waiting begins. That, the 14 days, that was somehow.  I think, one also feels somehow pregnant subconsciously, because you're totally careful and I hardly smoked anything. So that's already.  Yes, it's just, after a day: do you feel anything yet? No, you don't feel anything. Yes, and then on the 15th day you take the [pregnancy] test. But I already knew one or two days before [that she was not pregnant], because that's when I started having cramps and light bleeding. (Mrs. Marek)

Mrs Salzer expressed the difference between feeling and knowing even more pointedly than Mrs Koller, quoted above, and said of herself that she had already had the feeling of being pregnant immediately after the embryo transfer, although she did not know this definitively:

I mean, I already know that I'm NOT at that point, so [...] I mean, I already know that it's NOT necessarily [the case that she is pregnant], but from the FEELING? YES. From that moment on, I have the feeling [of being pregnant]. (Mrs Salzer)

Like most other IVF users in our study, Mrs Salzer was careful not to hope too much that she would actually be pregnant to avoid disappointment and despair if treatment proved to be a failure.

#### **Making pregnancy real**

Remarkably, the possibility of being "a little bit pregnant" also exists from a medical point of view. Even after the two-week waiting period following embryo transfer has passed,it is not always possible to say with certainty "if it has worked out" ("ob es etwas geworden ist") or not, to use Mrs Salzer's expression. The onset of menstruation or a positive or negative pregnancy test is not necessarily the criterion by which such a clear result can be determined. If the pregnancy test is positive and no menstruation has occurred, doctors and the women concerned assume that there is a pregnancy. Such a "biochemical pregnancy" is then clinically confirmed a few weeks later by an ultrasound examination, making a pregnancy even more "real".

The situation is different, however, when no menstrual bleeding has occurred, but at the same time no clearly positive pregnancy can be determined due to ambiguous hCG levels on the pregnancy test.3 Such a biochemical condition is sometimes referred to by some doctors in our study as "a little bit pregnant". In the case of the Mrs and Mr Lang, where this occurred during their first IVF cycle, blood was taken from Mrs Lang to determine the corresponding hormone status more precisely that by checking the hormone status in the urine. The couple was told in the clinic that the result should be available the same day in the afternoon. For Mrs and Mr Lang, 33 and 34 years old respectively, this increased their hope for pregnancy, but also prolonged the period of uncertainty.Their anger was correspondingly great when they only found out the result of the blood test the next day after several telephone calls. Mr Lang reported the negative result to us in an e-mail:

Unfortunately, we were unable to find out yesterday whether we were allowed to celebrate or not. At 3 o'clock in the afternoon there was still no result. Today we tried again—8:40 a.m., still nothing, another hour's wait. We are not angry, but here too the procedure is incomprehensible: Ultrasound appointment,—no, but urine test,—but ultrasound—no, wait for urine test, – not clear, – so, blood test – result in the afternoon,—no, but not,—so tomorrow morning,—no, but not so

3 The pregnancy test works by measuring the amount of human chorionic gonadotropin (hCG), a hormone that only develops during pregnancy.

early. Now, just after 10 a.m., finally the certainty. The waiting and hoping has come to an end. But unfortunately, the bad news. Not pregnant. That has to be digested in the first place. There were no tears, we are not upset. It's still too early. It wasn't meant to be yet [to become pregnant in the course of the first IVF cycle]. (Mr Lang)

Evenif the pregnancy testis clearly negative,it can remain uncertain whether a pregnancy is present or not if there is no menstrual bleeding. This was the case for Mr and Mrs Pichler during their second IVF cycle and Mrs and Mr Salzer, also during their second IVF cycle. The following vignette describes the medical appointment to which I accompanied Mrs and Mr Salzer and at which the negative result of the pregnancy test, for which Mrs Salzer had previously given urine, was discussed:

Dr Kramer greets us at the door of the consultation room and asks Mrs Salzer, who was the first to enter: "Are you bleeding?" Mrs Salzer denies this, shaking her head. Dr Kramer turns to Mr Salzer, who had entered immediately afterwards, and jokingly asks him too: "Are you bleeding?" Mr Salzer also, jokingly mocking his wife, says no. We all head to our seats as usual and before Mrs Salzer had even sat down, Dr Kramer announces that the pregnancy test unfortunately is negative: well, this would be just difficult now; if Mrs Salzer had already had her menstruation, it would be straightforward: pregnancy test negative plus menstruation; but it wasn't clear that way; it could just be the case that her menstruation would come later; but it could also mean that implantation had been delayed somewhat and that the hormone levels had therefore not yet built up.

Mrs and Mr Salzer listen quietly with disappointed and annoyed facial expressions. Dr Kramer continues that unfortunately she could now only offer to do another blood test; but she would probably only have the results on Monday, because unfortunately it was already very late for today; in order to get the results today, the couple would have had to come in the morning.

 [At Mr Salzer's suggestion, they had come to the clinic at 11 a.m., as Mr Salzer wanted to go to work for a few hours beforehand]. Mr Salzer defends himself, says it was not his fault. Mrs Salzer replies that it was certainly his fault, he had only wanted to come at 11 and now it was too late for the results of the blood test.

Dr Kramer seem uncertain about what to do, first saying that it wasn't Mr Salzer's fault and then immediately agreeing with Mrs Salzer that it was too late and they should have come earlier.

They then go on and on about whether Mrs Salzer could be pregnant or not and Dr Kramer keeps repeating that she was sorry that she cannot say anything today; everything is very complicated in early pregnancy and normally these steps that we observe go unnoticed.

At one occasion Dr Kramer asks Mrs Salzer if she feels pregnant. Mrs Salzer replies by asking how one feels being pregnant. Dr Kramer smiles and says that she could only tell from what others had told her, but if she simply feels different? Mrs Salzer: no, it is just like before the menstruation. Dr Kramer finally takes a blood sample from Mrs Salzer, whereupon a discussion ensues as to whether it might not still be possible to get a result today, which Dr Kramer again denies.

Dr Kramer leafs through the medical record again and says ponderingly that only three embryos had developed; but these would have been quite nice (she repeats this several times); but she had had a lot of eggs, a "huge pile of eggs" ("riesiger Eierhaufen"), but only three would have been fertilised. Mr Salzer admits: "Yes, that is also my poor [sperm] quality". Again, Dr Kramer says that if Mrs Salzer had got her menstrual bleeding, then one would know, but like this (?); there would just be pregnant or not pregnant. Dr Kramer then adds that there was also "a little bit pregnant", so the hormone levels had to be observed; but the pregnancy test was clearly negative. [...]

Finally, the meeting comes to an end and after arranging another appointment for the next week we say goodbye.

All the way to the exit, Mr Salzer talks to his wife and tries to convince her that they still had a chance for being pregnant. He calls Mrs Salzer (not very convincingly) a "slow breeder" ("langsame Brüterin") and that it could be the case that everything would just take longer. Mrs Salzer keeps repeating that she did not believe it, starting to cry. We stop and Mr Salzer hugs her for a few minutes, striking her head. Eventually we continue walking towards the exit.

 Mrs Salzer says challengingly that she could now smoke again. Mr Salzer replies: no, she couldn't; it could still be that she was pregnant. And he finishes the cigarette on his own.

The following day Mrs Salzer calls me on the phone to tell me that her menstruation started, which unquestionably showed that this IVF cycle was again unsuccessful.

Apart from the social dynamics between Mr and Mrs Salzer and Dr Kramer respectively and the dramatic quality that medical appointments can have, especially at the very end of an IVF cycle when its ultimate result is not yet clear, this vignette also shows how hope and uncertainty are intertwined in the teleoaffectivities of IVF. Uncertainty, spanning what is actually the case now ("a little bit pregnant?") and how this will develop in the near future ("an established pregnancy?"), opens space for hope. Against the background of inconclusive test results, bodily states of feeling and organisational procedures, such hope is negotiated between the involved actors in terms of past events in the hurdle-race IVF, uncertain medical knowledge about reproduction, results of a urine test, ascribed personal qualifications and shared (or not shared) cigarettes. At times, hope is probing, taking on hopeful diagnostic possibilities again and again, then desperate or dwindling untilit crumbles away and ends abruptly with the onset of menstruation—at least as far as this particular IVF cycle with its specific time horizon is concerned. After a break, Mrs and Mr Salzer will build up hope and try again and only stop ART treatment completely after a fourth unsuccessful IVF cycle.

If we look at it as a process, pregnancy may also be gradable rather than binary from a medical point of view. In any case, it needs to be made ever more "real", both physically and in terms of women's feelings, beginning with hormone stimulation and culminating in the pregnancy test. But even if a pregnancy is no longer questionable from a medical perspective because it has been "definitely" established through pregnancy tests and ultrasound scans, the making-real of pregnancy can continue.This takes two forms.The first concerns the feeling of being pregnant.Mrs Koller said in an interview one week after her pregnancy had been confirmed by the positive pregnancy test that she cognitively knew that she was pregnant, but that the corresponding bodily feeling had not yet set in:

On the other hand, of course it was really nice when I heard [during the pregnancy test] that it was OK. And somehow it's also in my head: I mean, it's OK now and I'm now pregnant. But somehow, in terms of feeling it still needs time. [...] At the beginning [of a pregnancy] it's still most uncertain [that a pregnancy will last], or I mean, the danger of something happening is the greatest. (Frau Koller)

Although Mrs Koller already felt "a little bit pregnant" during the phase of implantation, her feeling after the positive pregnancy test was too little to "really" feel pregnant.What she missed in this context, as she explained elsewhere, were such typical signs of pregnancy as morning sickness and especially the baby's movements. As a contribution to making the pregnancy real, she also gave an important place to the ultrasound examination, which was scheduled for the week after the interview and which was intended to confirm the pregnancy clinically, because she hoped that this would make the pregnancy more visible. She said about the pregnancy test: "I mean, what's the big deal? I mean, something just changes colour."

In the above quote,Mrs Koller also refers to the second form of making the pregnancy real: the risk that "something will happen." Certainly, the positive pregnancy test is the first objective, albeit not always clear, sign of pregnancy and once this hurdle has been overcome, women no longer doubt that they *are* pregnant.What they do worry about is whether they will *stay* pregnant. Especially in the first twelve weeks of pregnancy, the threat of a miscarriage is experienced as a real possibility. Such a threat was perceived as even more serious if women and couples had already experienced a miscarriage, as was the case with the Durand couple.

To some extent, such a risk is certainly also perceived in the case of non-medically assisted pregnancies, although here, too, the first twelve weeks of pregnancy may be considered the "dangerous" ones even in this case. This is supported, for example, by the fact that the gynaecologist who cared for Mrs and Mr Durand during their pregnancy did not give Mrs Durand the *Mother and Baby Book* (*Mutter-Kind-Pass*) 4 until after the twelfth week of pregnancy. He explained several times that he would always do so in order to reduce disappointment in case of a miscarriage.However, IVF users seem to experience the risk of pregnancy as much more pronounced than with "normal" pregnancies due to the high stakes involved in ART treatment and the difficulties of getting pregnant in the first place. In addition, the way in which the early stage of pregnancy becomes "visible" in the context of IVF may also play a significant role.

# **Precarious knowledge**

In IVF treatment, precarious knowledge is everywhere—and so is certain knowledge in the very moment. To a certain extent, knowledge produces uncertainty, as this points to the parts that still are not yet known. In contrast to medically unassisted reproduction, where conception only comes conscious "after the fact" at a comparatively late state, medically assisted conception is characterized by its very early, conscious, and detailed perception. This also applies to the aspects that can "go wrong". As far as her theoretical knowledge of human reproduction was concerned, Mrs Koller emphasized that it was precisely the knowledge of the possible difficulties that was new to her:

So to speak, how it works theoretically, uh—the fertilization and a pregnancy and so on, the development from the fertilized egg, that was COMPLETELY CLEAR to me. I mean, with all the stages, the biology of it. But what was, uh, very NEW for me was rather these things, that how REALLY possible it actually is that fertilization occurs. And that, first of all, it's not all that likely. And that if fertilization does occur, that even with NORMAL [pregnancies], as is often the case with one fertilized egg, but it aborts and you don't even NOTICE it and you just have your menstruation. [...] Somehow, I don't know, biologically speaking, OKAY: sperm cell, egg cell: kabong! <Mrs Koller and the interviewer laugh> It implants! But I mean, what kind of complications can there be UNTIL it implants! [...] So then, it's kind of like in the textbook: it works! But I know all the steps, where things may not work. This is what you do not know and this is what you realize then [when undergoing ART treatment]. (Mrs Koller)

4 In Austria, the *Mother and Baby Book* (*Mutter-Kind-Pass*) is a free of charge health prevention program for pregnant women and young children up to the age of five.

Mrs Koller's conviction that new knowledge is gained by going beyond textbook knowledge and by focussing on the potentially flawed parts of reproduction is striking. She focuses on what can "go wrong", which in turn is enabled by the fragmentation of the procreation process by undergoing the "hurdle race" of IVF with its various stages and cumulative outcomes. The complexity of the process turns much of the knowledge that she had known as unproblematic before her engagement with ART, precarious knowledge, knowledge until further notice. As a result, ART treatment also has the potential to make "natural" conception visible in a new way as an equally potentially ineffective endeavour. The need to make a pregnancy "real" after IVF treatment and the heightened awareness of how much can "go wrong" may extend to the post-IVF phases of pregnancy and further add stress to IVF users. In this sense, pregnancy after IVF may be by no means "completely normal", contrary to what medical professionals and the women and men concerned may believe.

# **Concluding remarks**

In this chapter, I have explored the entanglements of temporality, uncertainty, and hope as they become evident in the case of IVF treatment. I have argued that hope, in its relational and intentional mode, is intrinsic to IVF as social practice: as part of the teleoaffective structure of IVF treatment, hope holds together and organizes the doings and sayings of IVF, and by extension the human and non-human participants involved (Schatzki 1996; 2002). Against the backdrop of an often inconclusive past and present and potential failure in the future, hope both relies on and tackles uncertainty and—depending on where IVF users are in the process of IVF treatment and which temporal horizon is salient—maintains concerted movement towards a desired future; hope keeps the story/narrative of IVF going.

I followed IVF users in their dramatic quest for having a baby and becoming parents as they experience and deal with the necessities, predicaments and imponderability of IVF treatment. Focusing on the final phases of IVF treatment, I have shown their pragmatic stance by which they, being specifically situated, work through what needs to be donein the various stages of IVF treatment,make the best possible use of their resources at hand,imagine future possibilities,and try out new(and old) things to achieve pregnancy. In such a pragmatics of uncertainty (Whyte 1997), hope for a partially hidden favourable situation in the past and present and for positive outcomes in the future is carefully modulated, as their story unfolds: In order to make hope "bearing" ("tragfähig", in the words of Kinsky 2023: 34), IVF as social practice is organized in ways so that IVF users (and the doctors treating them) curb their hope to prevent too much disappointment, should an IVF cycle turn out to be unsuccessful, but nourish hope to the extent that necessary IVF work can continue and suffering be endured. In such a "paradox of hope" (Mattingly 2010), hope has intentionality; it is *hope for something*, thus bringing its referents (e.g., many eggs, embryos, and ultimately successful pregnancy and a baby) into play, charging them with embodied meaning and affective purpose, while simultaneously foregrounding potential failure.

Hope dwells in uncertainty about *what is*, *what will happen*, and *how best to deal with*. Knowledge brought into play as a means of dealing with uncertainty can also foster uncertainty, as detailed general medical knowledge about human reproduction makes visible the many aspects of conception that can go wrong, and tentative knowledge about the individual IVF cycle opens the space that makes gradable pregnancy in the form of "being a little bit pregnant" possible, both in the experience of IVF users and in biomedical discourse, and necessitates work to be done to make pregnancy "real."

I want to conclude by drawing attention to three implications that might prove useful for further research on uncertainty and hope beyond the case of IVF.The first concerns the central role that affects/emotions can play in social practices such as IVF. When taken seriously as relationally distributed among the (human and nonhuman) participants of social practices and not merely as momentary private states of feelings, hope can be probed for its function as an intrinsic constituent of social practices, furthering our comprehension of figurations that give rise to phenomena such as "being a little bit pregnant."

The second implication concerns the many forms and shades in which hope manifests itself in the stories of our informants, indicating complex feelings and functions: burgeoning hope, desperate hope, confident hope, reckless hope, comforting hope, etc. Academic literature lacks a sophisticated language of hope that could analytically capture this diversity. We could better grasp the significance of hope as a generative force in social practices by paying more analytical attention to such differences. Examining these across various socio-cultural settings might show that there are many more culturally marked idioms of hope than we can imagine.

Finally, the third implication relates to hope and uncertainty as they are temporally framed. Contrary to the taken for granted assumption that hope and uncertainty are always directed towards the future, our empirical material shows a much more complex situation, in which hope and uncertainty wander to the past and present and span to future events. By looking more closely at this temporality, we could gain a better understanding of how temporal figurations with their distinct temporal horizons are constituted and operate as social practices unfold.

#### **References**

Ahmed, Sara. 2004. The Cultural Politics of Emotion. New York: Routledge.

**Part III: Health Management**

# **7 Solo Living and Cancer in Denmark** Understanding Care Politics as the Architect of Human Vulnerabilities

*Rikke Sand Andersen*

# **Introduction**

What insights can people who suffer from cancer and who live alone provide about relations between vulnerability and care politics? This is the question that underlines the discussions raised in this chapter, as I set out to understand ongoing shifts in care politics as they emerge and transform in the context of welfare.The empirical material is drawn from Denmark and from ethnographic work among people suffering from cancer, but it speaks to much broader changes in the distribution and definition of care, and the rise in solo living that are taking place across Scandinavia and elsewhere (Vaittinen 2015). Also, ethnographic engagements with people who suffer from cancer while sustaining life in the context of solo living, allows me to explore what it means when we say that vulnerability is—at the same time—both fundamental to human existence and political, such as noted by Judith Butler (2020: 20–22).

In Denmark and more broadly in Scandinavia, since the 1960s onwards, the distribution of care resources have been organized around the guiding principles of a care politics that emphasizes state-supported social security and individual independence from the family. Anthropological literature on Scandinavia often names this an egalitarian care politics, emphasizing how Scandinavian welfare politics aim to promote equal distribution of care both within the families and within society, and how this involved a substantial professionalization and institutionalization of care. Ideally, women should no longer rely on kinship or marriage for survival or for living socially acceptable or sustainable lives, and the elderly, disabled or sick should not rely on their families for care and survival(Gullestad and Segalen 1997; Bendixsen et al. 2017).

The aging of the Scandinavian populationsmeans, however, that not onlyis there a dramatic growth in care needs, but also a diminishing professional workforce, and the family and people's private homes are increasingly reconsidered relevant contexts of care (Vaittinen 2015; Mattingly et al. 2011). Since 2006 one in five beds in Danish hospitals have been removed (Skovgaard et al. 2022), and "same-day-treatments" of cancer patients have gone up by 40 percent. Also, home care services are increasingly targeted at the neediest persons. Fewer older people receive municipality services (cleaning, shopping, care) from 18 percent in 2008 to the present 11 percent of persons 65+ in 2019 (Hjelmar and Rostgaard 2020). This mix of capacity reductions and political attempts to move care closer to the home of the patient mean that sick individuals must increasingly navigate treatment and care from a wide range of professionals, kin, and services concurrently (Skovgaard et al. 2022). Anthropologists have described how the transfer of care responsibilities to families may both heighten existing tensions and conflicts and promote experiences of belonging (Sparre and Rytter 2021; Grøn and Meinert 2017; Lamb 2014). But we only have sparse knowledge on how people who live alone experience and manage changing possibilities of care, or how shifts in the distribution of care resources reconfigure intergenerational responsibilities and vulnerabilities for individuals who live alone.

According to Eric Klinenberg, an American sociologist, the prevalence of solo living was minimal in societies worldwide prior to the 1960s (2013: 2–4). However, the number of individuals living alone has now reached nearly 30 percent of all households in the United States. Additionally, several major European cities have witnessed a surpassing of the 50 percent mark in terms of one-person households (Klinenberg 2013). In Denmark, four out of ten adults live alone, with the percentage of one-person households among the elderly exceeding fifty percent(Danmarks Statistik 2023). This chapter makes its initial contribution by highlighting the increasing number of individuals living alone, and I propose that examining how people suffering from cancer sustain life in the context of solo living provide a way to begin to understand and theorize emerging shifts in the distribution of care resources that are taking place in Denmark and across Scandinavia.

Introducing in detail the biographies and lived circumstances of Lise and Michael, two interlocutors that I worked with from April 2020 until August 2021, and drawing on the understanding of humans as embodied and vulnerable (Butler 2020; Guenther 2016) and upon critical feminist writings on care (Fischer and Tronto 1990; Buch 2018), this chapter makes its second contribution by pointing out that access to care is increasingly dependent upon social negotiation, and studying care in the context of solo living is a means of theorizing fundamental dependency and ethical responsibility in the context of welfare. With Elana Buch (2018: 12) I think of care as "the messy, disparate forms of practice through which people work to make life happen", and how these practices continually bring particular kinds of social relations, political economies, or vulnerabilities into being. Such a perspective on care reaches beyond the immediate, intimate context of care as practice, and it helps me acknowledge the polysemantic and shifting qualities of care and being

that emerges when care politics change (cf. Meinert 2021; Fischer and Tronto 1990). I suggest that attending to the productive dimensions of care politics and care practices helps to direct attention to what care produces (Buch 2018: 18)—including new kinds of vulnerabilities that are historically and socio-politically distinct. Before I turn to Lise and Michal let me share some more reflections on what I mean when I talk about vulnerability.

#### **Vulnerability and care politics**

Etymologically speaking, vulnerabilitymeans to be open to hurt. It comes from Latin *vulnerare*, to wound, hurt, injure, or maim. As a verb it specifies an action. That is probably why—in popular thinking and writing—vulnerability is often thought of as a state of being open to hurt from external risks (Vaittinen 2015: 104). A community can be susceptible to war, or a computer can be susceptible to damage. But as living, social organisms humans are also internally and persistently vulnerable to life itself; to the possibility of loss, destruction and to diseases such as cancer. There are no autonomous subjects without needs, "only degrees of embodied vulnerability" (Vaittinen 2015: 104) that elicits different care needs. In a similar fashion, Judith Butler (2020) says that vulnerability should not be understood as a static condition, but as a dynamic and relational process that unfolds in the context of social and historical relations. Humans are social bodies and therefore perpetually vulnerable to the loss of others, and to violence and disease. As humans we are "potentially undone by each-other" (Butler 2020: 23). Vulnerability, in this sense, is not a property of individual subjects, nor an external risk, but a product of social and political structures and processes. Vulnerability, Butler says, names "the porous and interdependent character of our bodily and social lives" (Butler and Yancy 2020: 483) and it invites discussions on how to live, how to face mortality and how best to make sense of the world (Butler and Worms 2023).

It is important to note that vulnerability to Butler, does not only gesture towards an existential condition. Instead, Butler advances vulnerability as an underlying aspect of human interdependence and coexistence, and one from which political principles emerge. Human vulnerability thus constitutes a repertoire of essentials that are subject to manipulation (for example through politics) and practice (such as care) for the purposes of producing what they call livable lives (Butler and Worms 2023: 27–28). Following this line of thought, I suggest that exploring solo living in the context of serious disease, testifies to the way in which care politics proposes itself as the architect of human vulnerabilities. I develop this argument by attending to what I consider to be emerging vulnerabilities in the context of solo living and changing care politics. The first being *relational vulnerabilities*, which refers to the increasing social and moral tensions that arise in negotiating access to care, and the second

being *vulnerabilities to the self*, which I with reference to Lisa Guenther's notion of unhinged (2016), define as the loss of abilities to engage in world-making activities.

# **Encounters with living alone**

In this fieldwork, which I have done with my colleague Sara Marie Hebsgaard Offersen, we have worked with ten key interlocutors, all aged 54–84, who lived alone and suffered from cancer. To understand how people sustain life with cancer, we invited interlocutors who were in long-term care, and who, to some extent, were living with the prospects of "a life with cancer". Cancer is treacherous and unpredictable, though, and four of our interlocutors have passed away as I write.

The basic benefit of ethnographic fieldwork is its open-endedness (Rapp 1999). We conducted fieldwork from 2020–2021 (app. 14 months), but it did not work out as first planned.Our initial goal was to explore the social dynamics of care situations and to work with care workers and family caregivers as well as those in need of care. When the covid-19 pandemic broke out at the turn of the year 2019–20, enforced lockdowns challenged our presence at hospitals and other care institutions. Also, we were not able to visit with our interlocutors when home-care workers were present. We ended up spending many hours in the homes of our interlocutors, mostly being present when others were absent. Instead of witnessing the relational dynamics of care situations, we gained detailed insights into their life-histories, and through their experiences we learned about transformation in family- and gender values, intergenerational relations, and expectations to care; subjects of relevance to our understanding of care politics, and how it manifests in the minutiae of everyday life.

Some visits were structured around life-history interviews, or on mapping and narrating the web of social relations that made up their lives.Other visits were dominated by informal conversations on experiences and notions related to "family", "home" and "care". Sometimes we would go for a walk, act as chauffeurs to the hospital, or go for a drive and visit significant places such as former homes and communities where they had once lived. Also, we talked about experiences with living alone, and we shared quiet moments together. Due to the risk of covid-19, three out of ten interlocutors were only engaged with through online platforms.While the online meetings tended to be shorter, and made "hanging out" difficult, they allowed for regularity (we met often with these informants), and it was possible to both do semi-structured interviews and engage in informal conversations. We also interviewed three family members, one friend and one volunteer. In total we conducted about eighty interviews.

#### **Solo living in Denmark**

Despite the moral dominance of the nuclear family and the detached house [parcelhuset] that developed during the 1960s and 1970s, the most dominant trend in living- and household arrangements in Denmark since the 1960s has been the rise in solo living (Klinenberg 2013). Today, there are 2.7 million homes in Denmark housing a population of 5.8 million people. In 1.3 million homes live only one adult (18+). People end up living alone for a variety of reasons and living alone is experienced and practiced differently.While research on Danish solo dwellers is very sparse Lynn Jamieson and Roona Simpson's research from Ireland (2013), as well as Eric Klinenberg's (2013) research from the US suggests that people who live on their own have different degrees of personal ties to kin, family, and friends. Some maintain relationships across households with partners, children, parents or friends, and others do not.

This diversity was also present in our material. Seven interlocutors lived alone because they had recently divorced, or their spouses had passed away, and three had lived alone most of their adult lives. Two of those had raised children on their own. None of them had actively chosen to live on their own, but that was "how life had turned out", as they would often say.There is thus an aspect of contingency and temporality to living alone. Some of our interlocutors had experienced it—at certain periods in their lives—as a source of freedom, while for others, and in other parts of life, it was associated with social isolation and hardship. None of our interlocutors, however, associated living alone with anything shameful, wrong, or dangerous (cf. Lamb 2022).Most of our interlocutors were middleclass, all lived in urban areas, and three, including Michael whom I will introduce in this chapter, lived lives that were burdened by poor economy and fragile relations.

In Denmark living aloneis life-phase related and compared with other European societies such as France or Italy, inter-generational cohabitation is not very prevalent. Only three percent of all households in Denmark consists of three generations (Rytter et al. 2021). Living alone is considered part of conventional life-stages, and a source of "personal growth". Small children are trained to sleep on their own, to play in their own rooms, and young people are strongly encouraged to move out of their natal home to develop into a full person. Overall independency, which sometimes manifest as distance or self-reliance or living alone is considered a source of growth, and part of becoming a full person in Denmark.

In the 1970s one out of five elderly in Denmark, resided with the family of one of their children (Christoffersen 2004). Lise had, as the only one of the interlocutors that I worked with, lived with, and cared for her mother when her mother was aging. In 1972 Lise was in her mid-twenties, had a newborn daughter, and was going through a difficult divorce. She ended up moving in with her mother, who lived alone in a spacious flat. It was supposed to be a period of transition, but the three generations of women ended up enjoying the mutual care and support of sharing the same household right up until Lise's mother passed away. Lise is now in her seventies, and her daughter has established her own home and nuclear family, while Lise is living on her own in the flat that she used to share with her mother. I asked her if she had ever considered moving in with her daughter now that she has fallen ill. She responded laughingly and said: "I would never ask my daughter to do the same. I am not her responsibility. She has her own family now." Lise always refers to her relationship with her daughter as "very close" [meget tæt]. But establishing the kind of connectivity and relatedness that Lise treasures includes "not asking for too much help", even though she is dependent upon elaborate care and attention from friends and family to sustain a meaningful life with colon cancer.

I will return to Lise later, but for now, suffice it to say that her biography reflects historical shifts in care politics and cohabitation patterns in Denmark. The reflections she shares with me about her relationship with her daughter also reproduce taken-for-granted visions of old age and illness as a time for naturally needing and deserving care from professional care workers. Care politics are contingent in the sense that they have emerged through historical struggle (Tronto 2013), and through (inter)subjective, situated, motivated and creative questioning (Meinert 2021; Buch 2018). Following this I understand care politics in broad terms, as the distribution and definition of care resources and responsibilities; not in a static sense, but as the ongoing consolidation of sense-making, meanings- and practices that is contingently re-established, but which comes to function as a generative matrix for further practice1 . We should, therefore, be careful to talk about care politics as something that axiomatically place care within the state or the family (Thelen and Alber 2018). But building upon Scandinavian care research,it is reasonable to say that care responsibilities within families have diminished due to the professionalization of care fostered within the context of the welfare state, and the structuring effects of an egalitarian care politics (Mikkelsen 2016; Ludvigsen 2017; Bendixsen et al. 2017: 5). As I will discuss further in the below, care,in the context of the family rather emerges into a relational ethics in the sense that it remains open to social and moral negotiation (cf. Andersen and Offersen 2022; Mikkelsen 2016).This perspective emphasizes the inherent vulnerabilities that are intertwined within the consolidating and generative effects of care politics, I suggest. In the following I introduce Michael and Lise, and I show how an increasing reliance on family and friends was—for some—a source of compromise and doubt, as well as of connectivity and relatedness; what I define as relational vulnerability. But for others, such as Michael, their homes were

1 I am inspired by Lisa Guenther's writings of quasi-transcendental structures in my definition of care politics. A full account of this concept and how it might relate to care politics is beyond the scope of this paper, but see Guenter (2021).

transformedinto environments of unpredictability andinstability.Difficultiesin accessing care made Michael more vulnerable, and the enforced mobility between locations (in and out of hospital), imposed upon him a model of care, which he could not commit to and which—perhaps—ultimately contributed to his sense of abandonment and death; what I define as vulnerability of the self. Due to the complexity of Michael's case, I present his life and the conditions around his cancer care in greater length than Lise's.

#### **Relational tensions**

Lise is a former manager in the public sector, and today a highly active pensioner. She has gone through surgery, and she is in chemo to "fight a cancer in her stomach", as she says. I visit her several times from spring 2020 until the early autumn 2021. I came to know her as a very warm and cheerful woman, with an extended and active network of friends and family. When I visit her in her large two-bedroom flat, we sit opposite each other in the large couches in her spacious living room. From where I sit, I can see her desk. It is loaded with papers signifying the mount of activities that Lise is engaged in as a volunteer in various associations [foreninger]. Her phone is always on the coffee-table that divides the space between us when we talk. The phone extends the sociality of the two of us to include her friends and the familymembers that are calling to hear how she is.The text messages or the incoming calls function as invitations to share this and that story of a friend, or as a reminder for Lise to tell me who is acting as a chauffeur to the up-coming chemo-treatment. Lise's daughter, Ruth joins Lise for most hospital appointments, but chemo takes up a full day, and Lise's friend, Karen, whom she has recently met when she was volunteering in a local cancer support group, has "the chemo duty". Often Lise is very tired after chemo, and she cannot drive her own car. "Chemo-duty" therefore not only includes driving back and forth from Lise's home to the hospital, but also in assisting Lise climbing the stairs to the second floor and prepare some food in the kitchen while Lise gets undressed in the bedroom. Karen brings the food into the bedroom when Lise is comfortably placed underneath her blankets and sometimes, she keeps Lise company while Lise eats. Karen leaves when Lise is ready to sleep for a few hours.

Due to chemo-treatments Lise is often tired, and she needs help shopping for groceries and washing her clothes. Sometimes a neighbor stops by with a liter of milk and some bread, and Ruth and her granddaughter helps her bring her clothes down the basement,where the washingmachineis placed.Also, she has had to adopt to a life with an ostomy-bag. Lise is a large woman, and she cannot clean the tubes and the bag herself. Every morning a home care nurse comes by and help Lise clean the tubes and get dressed. Also, every two weeks a care worker come by for 45 minutes and cleans her house. "It is not enough to keep the house clean", Lise says, and

she often hesitantly accepts Ruth's offer to wash the floor in the kitchen when she visits. To withstand the loss of bodily integrity, her sense of control and familiarity with her own body, that cancer has brought onto her life, Lise must—daily—engage in care situations with a wide range of friends, family, and professional caregivers. When friends come over, do the grocery shopping, or drive her to the hospital, Lise is reminded of "all the love that she has in her life", as she says. Care in this sense, structurally supports her sense of self and her embodied capacities to engage in worldmaking activities (Buch 2018).

Shortly before the Christmas holidays, I call Lise to ask if I could come visit before the holidays begin, and she tells me—upset—that she has been through a very difficult period.

Signe [granddaughter] was in here washing my clothes again. I was just so tired, exhausted… you know. I just lied there. I was like a whale in my bed. I couldn't do anything. I was so tired. Ruth was of course busy at work, but we had to call her. And she came as soon as she could.  It was terrible. I did not want Signe to see me like this. And I was so dependent upon them. You know they cocked and took me to the bathroom. Things I had otherwise denied that they should do.

Lise ends up spending two days at the hospital because her lung had collapsed. "But now I'm home again", she says. "It's lovely,andMathilde [the care worker] now comes every morning and keeps an eye on me". Lise actively engages in many different relationships, but it is important to her to reciprocate the generosity of others, and she is most comfortable when she has the strength to co-define the terms of her relationships. After the situation with the collapsed lung, she offers her daughter to go shopping clothes for Signe, and she is planning how to "spoil Karen" with a nice dinner when she has regained her strength.

To Lise, as well as to our other interlocutors, the necessity of asking for help was both a source of relatedness and connectivity, but sometimes it was also uncomfortable fact of life, producing social and moral tensions, or what I call relational vulnerabilities. To the elderly in Denmark, it is considered normal to be cared for by professional care workers, and our interlocutors felt their life balancing precariously at a juncture between "doing for themselves"—which included "getting by" relying on what many of them considered to be sparse professionally provided care and asking for help from family and friends. Statements such as "I always try to even out my needs, so one week I ask my daughter, and the next, maybe a friend", or "I know my family would like to help me, but when? They have their own lives" were prevalent throughout our material. Lise's sense of self is inherently intertwined with her relationships and interactions with others, and care needs—in a sociopolitical context where care is often considered a condition of possibility (Guenter 2021) established by the state—often become a source of relational strains or disturbance. As noted in the above, Lise often felt defined by "the virtue of the address" (Butler 2020: 46), in the sense that her care needs sometimes compromised her sense of self as a capable person, and her notions of what constitutes "a good friend" or "a good grandmother".

In the context of solo living and cancer, embodied vulnerabilities are thus co-constituted by a repertoire of relational and meaning-making issues that must creatively be addressed to sustain life. Similar points have been raised by Buch (2018) and Grøn and Meinert (2017) in their work on care and relatedness, addressing the dark side of "kinship as a counterbalance to the recent illuminating preoccupation with kinship as belonging, relatedness and kinning" (Grøn and Meinert 2017: 583). Care is not only a "do-good-practice". When in need of care, the ties we have with others are delineated (Butler 2020: 22), and relational vulnerabilities emerge as part of a relational ethics that is contingent on the centrality of defining and negotiating care responsibilities. In the following I describe the case of Michael and how a comparable situation involving unresolved care needs unfolds in another combination of solo living, care, and vulnerability.

#### **A broken self**

In early September 2020 Michael had a rectal cancer surgically removed. After a few days at the hospital, he was unwillingly returned to his home to recover. Every morning different home-care nurses visit him. They clean his surgical wounds, and the stoma-bag and tubes that has replaced parts of his intestines. But gradually Michael's wounds become infected, and he suffers from a pain that is brute and limiting, in the sense that he is confined to his bed, and it is difficult for him to move around in his home without assistance.

Michael is in his mid-fifties when I first meet him.We have talked on the phone a couple of times before I visit him one August-afternoon in the small, terraced house that he rents. Michael has worked on and off in casinos and had random chauffeurjobs. For the past 15 years or so he has been "outside of the labour-market" [udenfor arbejdsmarkedet], living of social benefits. Before his life was interrupted by cancer and pains, he spent much time at the local library educating himself. Michael's curiosity and analytic interests in the world around him manifests in the ways in which he narrates and interweaves his own story with references to ongoing political debates on the state of the welfare society, lack of job-opportunities of political will to distribute resources more fairly. Michael is disappointed by the then sitting Sociodemocratic government, and he shares with me theories about the origins of what he calls "the flawed-well-fare-system" where well-educated managers and doctors [djøffere og læger] earn a prosperous living, while people like himself are abandoned to a life in poverty.

When you are not working, you are not a real human-being in this system, and it is the managers and doctors who decide if you can ever become a human being again.

The only family he has left is his sister, Susan. Susan lives in the Northern part of Jutland, which is a two-hour drive from Michael's home. According to Michael it is a troubled relationship, and he has a two-year old niece whom he has never seen. Besides from two male friends, who occasionally drop by for a chat and a beer, Michael spends most of his time on his own in the company of his cat, Muffy. Despite the painful absence of company and intimate relations, Michael's home is organized in ways that reflect traditional values of sociality in Denmark. A large barbeque is standing in the front of his house, and he can pull up extra kitchen chairs to make room for four or five people to share a meal in his kitchen.

Perhaps to establish meaningful, temporal connections between his past and his present, Michael often repeats how his father, who had worked as a manual worker himself, never encouraged him to pursue any kind education. "A society is always in need of strong men, who are willing to work hard", his father had reasoned. This strategy had failed Michael and he blames the difficulties with building long-termrelations on his poor economy and failed social status.

It is expensive to engage in friendships; to attend birthdays and eventually the birthdays of their children, participate in nights out—concerts and… so I guess that I gradually isolated myself.

Michael is eligible for public home care, which in Denmark is free of charge and provided by the municipalities. Every day he is brought a warm meal, and care workers clean his house every two weeks. Occasionally they will help him shower. Public care work is structured around tight work schedules, and care workers enter the homes of the elderly and sick with detailed, and temporally demarcated, task-lists.  Michael thinks "the homers" [hjemmerne] as he calls them—purposefully omitting "care"—are running in and out of his home, not really paying attention to him or his needs.Michael imagines that access to "proper care" [den rigtige hjælp] would repair the damage that cancer has done to his life, and that he, because he is living in a welfare society, is entitled to receive care from "the system" [systemet or det offentlige].

In Early DecemberMichael estimates that he has lost 30 kg,and his skinis "hanging from his bones", as he phrases it. His surgical wounds are very sore, and he suspects that they are infectious. Most days he is too weak to leave his bed. Simple maneuverings such as brushing his teeth or going to the kitchen for a cup of coffee previously neutralized through embodied knowledge and strength are now impossible. Michael feels abandoned, and his capacities and desires to engage in meaningful relations are diminishing. I know from a care worker that visits him, that he has been offered support by the palliative care team at the local hospital, and a male care worker, whom Michael trusts and talks about with kindness, takes charge of the situation. In December and January 2021 Michael is in an out of the hospital a few times.  At the hospital he is constantly worried that they will send him home too soon, and he also worries about transport. He succeeds, however, in persuading a nurse to grant him a flex-taxi. Flex-taxies are paid for by the state and provide a means for people who are not able to drive themselves to get a ride home. "They keep asking if I do not have someone who can pick me up. God dam it, I have told them SO many times, that I live on my own".

From Christmas onwards I only talk to Michael on the phone. He calls me two to three times a week. Sometimes he is joyful and wittingly asks how my manageriallife [djøf-liv] is going. His voice gives away the ambivalence that is so characteristic of the way that he relates to me and the care workers that come to his house. He is both angry and warm. Both dignified and very vocal about the neglect he suffers. He is dependent upon care workers for care, and on me for having someone to talk to. I ask if I can visit him, but he says: "My house is dirty, I am dirty, it would not be a dignified visit". I bring him food a few times, but I am not invited in.

In early spring 2021 Michael learns that his cancer has recurred. He is offered more surgery, mostly to relief him of some of his pains. He refuses and tells me that he does not trust that they [the system] regard him "human enough" [de ser mig ikke som et menneske] to be granted the care that surgery requires. Michael eventually ends up at a hospice close to where his sister lives. He is there for a few weeks before he passes away. Eventually he is buried with his cat Muffy.

In the last months of his life, Michael is in despair, and his unmet care needs filters into a breakdown of himself as well as his domestic space. As his body and his home breaks down, Michael loses his abilities to engage in meaningful relations or other world-making activities (Buch 2018), which again adds to his isolation and maybe even to his death.

#### **Engaging accusations of abandonment**

Michael—more so than any other interlocutor that we worked with—struggled to access the kind of care that was necessary for him to sustain life (Butler and Worms

2023), and in the end—abandoned by the system and his family—he gave up. In such complex stories, with accusations of neglect it is important to consider different and potentially conflicting perspectives (cf. Meinert 2021). I primarily had access to Michael's version, but I also talked to one of Michael's care workers and to his sister, Susan, with whom he eventually re-connected in early spring 2021, just before he came to the hospice. According to Susan, Michael did not find peace at the hospice, but he "was calmer than when he had been at home", and he had shared with her stories of gratitude about some of the latter encounters that he had had with the hospital. A few weeks before Michael ended up at the hospice Susan went to see him several times a week. At first, he had refused to accept her presence and help, but eventually he gave in. Susan tried to negotiate more public home care, cleaned up his home a bit, and sat with him throughout the afternoons when he was tired and in pain; making sure that his most basic needs of water and food were met. Eventually she was on sick leave from her job. She was exhausted and together with a care worker, she made plans for Michael to go to the hospice.

I was constantly in a battle with myself. There was no way I could take care of Michael and my own family at the same time. Four hours in a car every time I went to see him. And feeling guilty, knowing that he was lying there, in pain all by himself when I left. What was I to do? I was glad when the hospice took him in, but also felt a bit guilty.

Michael and Susan's stories may be seen as everyday representations of an egalitarian care politics, as they both expect care responsibilities to primarily lie within the state. But their stories also exhibit the social negotiations and the porous connectivity that is fostered in the tension between Michael's care needs and Susan's insolvable situation, swaying between being able to help Michael, and being cut off, or not having the time and energy to care for him. The inevitability of Michaels care needs testifies to his basic, human vulnerabilities. The pain, his thirst, and immobility invite and demand resolution. Susan knew of this, and it haunted (Grøn and Meinert 2017: 582) her in profound ways. Like Michael she felt that they were let down "by the system", and she suffered from feelings of guilt and anger, because she was not able to support Michael in a way that she considered meaningful to him nor to herself.

I suggest that we see Susan's experiences with Michael as a testimony to the production of what I call vulnerabilities to the self. Lack of care made Michael's life and sense of self fall apart causing a profound unraveling of his life.He became unhinged (Guenther 2016) in the sense that he was unable to respond to any kinds of attention from professional care workers, from his sister and from me. He was increasingly disoriented and disconnected from the world, losing trust in the intentions of his sister and his other caregivers. Unhinged describes, according to Guenther, "what happens when the articulated joints of our embodied interrelational subjectivity are broken apart" (2016: 12). In her work on solitary confinement, Guenther shows how physical punishment, exhaustion and isolation put intense pressure on the capacity of American prisoners to relate to other people and to their selves. Prolonged isolation cuts prisoners off from their network of social, cognitive perceptual and affective support, and "structurally undermine their capacities for meaning making. They become unhinged.They lose their embodied orientation in the world and their sense of self " (2016: 154). I do not mean to indicate that Michael's life is comparable to the life of supermax prisoners, but I suggest that his lack of access to care and the immense pains and what he experiences as a social abandonment result in him falling apart. In this sense lack of care can be seen as a form of violence that erase a subject's connections to others, and reduce them to a bare, isolated self, which can no longer sustain life.

#### **The architect of human vulnerabilities**

We are all given over to others and to life in ways that we cannot control (Butler 2020: 46). Cancer surely testifies to this. As attested by Lise and Michael, many embodied practices previously part of an everyday normal, such as taking a shower, cleaning the kitchen floor, or getting up and down stairs, are compromised, and in their attempts to sustain life they are forced to recognise and make visible to others "the basic vulnerable conditions of their embodiment" (Butler 2020: 26). For some, like Lise, asking for help, was a source of relatedness, but it was also a source of relational vulnerability, in the sense that access to care was contingent on inter-relational negotiations of care responsibilities. For Michael, social abandonment and lack of care transformed into a loss of self. He became unhinged (Guenther 2016) and lost his abilities to engage in meaningful world-making activities, suggesting that care resources may be distributed in ways that sustain or denies or erase certain forms of existence or subjectivity.

When care politics change, so does both the conditions and experiences of living, and more profoundly of living alone. Consequently, solo living may be seen as a way of life made possible by care, and a way of life which is lived and experienced in the tension between relationality and care politics.  Understanding relations between solo living, care politics and vulnerability thus also testifies to another anthropological testimony essential to the solo living research, namely that living alone is not merely a reflection of an inherent, human thrift for autonomy or freedom (cf. Coleman 2014). Vulnerability understood as a generalized fact of life in many ways marks the limits of individualism (Butler 2020; Meinert 2021), emphasizing that solo living is a political and social accomplishment sustained by care. This argument is important since it (once again) shakes the modern delusion of the human as potentially autonomous and independent, and it is consequential for our understanding of the role of care in society (cf. Tronto 2013). Exploring solo living in the context of serious disease, I suggest, testifies to the way in which care politics proposes itself as the architect of our human vulnerabilities, and it reminds us that vulnerability is not inherently individual, but distributed by structures of power, privilege, and oppression (Vaittinen 2015). When I say that care politics proposes itself as the architecture of our human vulnerabilities, I mean to emphasise that the ongoing, creative distribution and definition of care resources is a process that is intrinsically also shaping, designing, and producing human vulnerabilities. In this chapter I show how changing care politics produce both relational vulnerabilities and vulnerabilities to the self. Care is in essence both a treatment and an enabler of human vulnerabilities.

Attention to care as productive to relatedness (Carsten 2007) and social inequality or vulnerability (Buch 2018; Meinert 2021) is not new to anthropology. Recently, Sarah Lamb (2014) and others (Meinert 2021) have described ongoing shifts in care responsibilities between states and families that are taking place around the world. In India, Lamb says, rural-to-urban labour migration intersects with drops in intergenerational cohabitation and negotiations of care responsibilities of the sick and elderly, and a law from 2007 stipulates that children may be fined and jailed if found guilty of neglecting their aged parents (Lamb 2014: 50). This law brings to light the belief that the family, rather than the state, is the proper agent of care and, perhaps, the fear that this obligation will not be honored. It also, however, bears witness to the difficulties and often devastating care-caps that develop due to the speed of social change, and it affirms that creating a society that generates sustainable lives for people of every ability and background means recognizing the ways in which care is deeply entangled with household-structures and changes in co-habitation patterns (Lamb 2022; Klinenberg 2013), as well as notions of intimacy, belonging and relatedness.

Historically the welfare state has played a significant role in enabling the possibility of living alone, and the rise in solo living has been facilitated by those same supportive care infrastructures that are currently undergoing transformation (Klingenberg 2013). The figure of the elderly solo dweller—I believe—in many ways embodies a shared notion of what a successful welfare state looks like. It is important for me to stress that I do not wish to contribute popular or academic narratives that represent solo dwellers as *per se* vulnerable or lonely, or which equals solo living with social disintegration (cf. Grøn 2016; Lamb 2014). I would argue that we see solo living as an emergent sociality (see also Coleman 2009; Klingenberg 2013), partly made possible by an egalitarian care politics. Lise confirms this when she laughingly litters my inquiry about the possibility of her moving in with her daughter.  It is also important for me to emphasise that ongoing changes in the distribution of care, and the invention of private homes as contexts of care manifest in the everyday lives of sick people in a variety of ways (cf. Mikkelsen 2016; Andersen and Offersen 2023). But for all they set up the contours of a care politics in which the self, others and the home are brought into new forms of proximity, which may be a challenge for people who live alone. Solo living is, as noted in the above, regarded a normal way of life in Denmark. But it might in the future become a crucial site of political struggle and contestation, as current, intersecting conditions of care politics and embodied life are making solo living in Demark both possible, yet increasingly difficult.

#### **Acknowledgements**

I would like to thank Lise and Michael, their families and the other interlocutors who worked with Sara Marie Hebsgaard Offersen and I, and who shared intimate details about their lives and relations with us. Without their generosity this chapter would not have been possible to write. I hope that the text reflects—to some extend—their experiences. Also, I would like to thank Maria Louw, Line Dalsgaard, and Sara Marie Hebsgaard Offersen for commenting on earlier drafts of the chapter. Also, thank you to Mette Terp Høybye and Maja Hojer Bruun for inspiring conversations on relations between solo living, health care and welfare. The chapter was presented in an early version at the XI MAAH Conference, 2021 hosted by Bernhard Hadolt and Andrea Stöckl in Austria, and I am grateful for the comments I received then and in their process of editing the book.The study was made possible by a grant from the Danish Cancer Society.

### **References**

# **8 The Uncertain Future of Antibiotics** Navigating Bacterial Presence in Hospitals amidst Antimicrobial Resistance

*Antonia Modelhart*

### **Introduction**

In recent years, antibiotics, one of the key pharmaceuticals of modern biomedicine, are increasingly a scarce good: rising resistances to the common substances and a dry antibiotic pipeline—a stalled development of new antibiotics—configureinfrastructural uncertainties: the massive and far-reaching reliance on antibiotics for the function of not only modern biomedicine and but economies, security and modernity itself shape grim visions of a future without effective antibiotics (Landecker 2016; Chandler 2019).

In my research on antimicrobial resistance (AMR) in hospitals, I follow the uncertainties clinging to antibiotics and ask what this means for hospital staff in their everyday encounters with bacteria, infections, and growing resistances to antibiotics. Particularly, I look at hygiene practices as the old-fashioned and odd companion of the antibiotic era and argue that these practices play a central role in meeting and managing antibiotic uncertainties in times of AMR. Aligned with the volume's inquiry of how "hope and uncertainty take on particular meanings in the policing andmanaging of health,illness and wellbeing" I explore how hygiene practices shape the management of microbial encounters amidst antibiotic uncertainties. As part of AMR, these uncertainties are met with elaborate practices entailed in what is called hygiene management in German hospitals that give substance to microbiopolitics (Paxson 2008; 2012; 2014),where the governance ofmicrobial presenceis a key aspect of caring and managing individual and collective bodies. Approaching AMR through the meaning of uncertainty in the "policing and managing of health" opens a way to explore the multi-faceted nature of AMR: because AMR is a moving subject through scales, spaces and times, uncertainty figures on different layers, each layer telling us something about how we envision acting upon it as a health threat.

On a global scale, the uncertain future of antibiotics as effective substances against infections configures a looming global health issue that is both a present, but an even more pressing issue in bleak anticipations of a future without antibiotics. Relatedly, on a small-scale, health professionals in hospitals and especially hygiene professionals, build the awareness inside hospital walls that enacts this global health threat in daily practices and ways of doing medicine and healthcare. Here, hygienists embody the large-scale uncertainties of AMR put into practice in daily hospital flows, meeting hospital pragmatics infused by historical, political, economic, and material spheres. Further exemplified on a microscopic level, these uncertainties materialize themselves in the openness of bacterial compositions that can mean so many different things and must be managed accordingly to the hospital environment. Here, hygiene figures as the management of uncertain bacterial presence, or to be more precise, the uncertain processuality of bacterial compositions (which very well might be a deadly one for humans) linking back to the large-scale uncertainties clinging to antibiotics as an effective substance to control these presences.

I want to show how the emerging uncertainties because of resistant bacteria and ineffective antibiotics give rise to hygiene regimes where barriers, walls and borders play a crucial role: hygiene is an ongoing negotiation and oscillation between the inside of the hospital and the outside. I am particularly intrigued by how actors construe "the outside", i.e., the social being and living outside of hospital walls as relevant for hygiene matters inside the hospital, and ultimately, for managing AMR. While hygiene is often assumed to follow universal protocols for sterility and cleanliness, hygiene work encompasses intricate processes of considering various aspects and processes of the "outside" and thus configure and work along localized and local microbiologies (Koch 2011; Yates-Doerr 2017). In this regard, a patient's skin and the hospital's walls both present specific barriers that require complex considerations when enacting hygiene measures. The orchestration of hygiene is thus a delicate, nuanced practice for managing human life alongside microbial encounters.

In the first part of this paper I map the relation between the hygienic hospital and antimicrobial resistance. I follow the historical contextualisation of microbial encounters and shifting epistemologies mirrored in the transformations from Pasteurian and post-Pasteurian approaches to trace how hygiene practices historically engender different ways of approaching microbial life in relation to human life. In the second part, I explore how hospital staff and patients make sense of bacterial presence based on my empirical material. The procedure of risk-adapted screening of patients in hospitals serves as a case to analyse the rationale of hygiene. Along screening as one of the key hygienic measures in German hospitals, I question the large-scale, societal implications of such hygiene measures when viewed through a microbiopolitical lens.

The empirical illustration of the governing of microbes in the second part is structured along the process of admission and discharge. Both the situation of entering and exiting the hospital highlight how hygiene practices constitute a mediation between the inside and the outside of hospitals walls. Within the hospital, the mediation continuous as one between humans, microbes, and materials, where hygienic risk is allocated to specific bodies, patients, wards, and to spaces both inside and outside the hospital. Whereas inside the hospital, hygiene practices aim to exercise control and management over bacterial presence and compositions, this scenario changes abruptly once outside the hospital.These are the tensions I intend to follow in this chapter, as they present themselves in my material, being especially remarkable in the experiences of a patient, Nina. Illustrating the situatedness of hygienic risk, I will switch between Nina's perspective, a patient diagnosed with drugresistant bacteria during a hospital stay, and excerpts from interviews conducted with the hygiene management professionals I name Paul, Elli and Carl as well as Dr Andress, a hygiene physician.

# **Theoretical approach**

The chapter's argument builds on recent theoretical approaches in thinking about microbes: a microbiopolitical lens (Paxson 2008, 2012, 2014) allows me to analyse hygiene practices in their relation to and their entanglement with large-scale politics, social practices, and biology while acknowledging the situatedness of bacterial materiality through borrowing from Landecker's (2016) *biology of history* and wider discussions of *local microbiologies* (Koch 2011; Brotherton and Nguyen 2013; Yates-Doerr 2017).

The addition of *micro* to Foucault's concept of *biopolitics* extends the analysis of how populations are governed to how populations are governed by and through their microbial encounters. Hygiene management, therefore, can be viewed as a microbiopolitical approach, following Paxson's understanding of "the creation of categories of microscopic biological agents; the anthropocentric evaluation of such agents; and the elaboration of appropriate human behaviors in relation to microorganisms involved in infection, inoculation, and digestion" (Paxson 2008: 17).

To account for the sociomateriality of resistant bacteria the concepts of *local microbiology* and the *biology of history* has proven fruitful. They both deal, in different registers, with the difficulty of accounting for the ever-changing material (*biology of history*) and the situational (*local microbiology)* nature of biological agents such as bacteria. Landecker's (2016) proposes *biology of history* to capture the enmeshment of bacterial evolution alongside the production of knowledge: As AMR illustrates, producing knowledge about bacteria and their evolution that resulted in the development and use of antibiotics, altered the materiality of bacteria themselves. The altered materiality of bacteria displays in acquired resistance mechanism that give rise to a biology of history, a materialized form of sociohistorical processes.

The concept of *local microbiologies* (Koch 2011; Brotherton and Nguyen 2013), a contribution to the concept of *local biologies* introduced by Lock (1994) in the 1990s, stresses the implicit co-productive processes of social and biological records in human–microbial relationships (Koch 2011: 84). Building on Lock's attempt to denaturalize the universal biological body with attending to *local biologies*, Yates-Doerr (2017: 382f.) further argues to denaturalize the *local* and specifically ask for the performativity of local biologies. In this vein, I look at the microagents of local biologies, bacteria, to explore what the localizing of biology means in the context of managing AMR in hospitals: what version of localities are actualized in bacteria's biology through hygiene staff?

This process of doing the local, I argue, is neither self-evident nor objectively innocent, no matter how geographically formalized the local microbiologies in the hospital are construed with the screening schemes (or in all the geographically distributed AMR-data). The microbiopolitics of hygiene work display the ever-changing ontological status of bacteria in everyday life. Hygiene practices epitomize the essence of locality, through its means and ends, and the way in which hygienists produce the hygienic hospital in a specific (microbiopolitical) way through localizing and historizing biology.

# **Data collection and methods**

At the core of this paper are questions about how living with—and being at odds with—bacteria give rise to practices around hygiene, health, and disease. What is done to act hygienic in view of the presence of bacteria? How is a hygienic hospital in times of AMR envisioned in Germany? These questions centre around a tension very central to my research on AMR in biomedicine: how hygienic risk in humanmicrobial encounters revolve around specific spaces, bodies, and materialities.

I conducted 13 semi-structured interviews in Germany that focused on either professional or personal experiences with diagnosed AMR. I visited four different hospitalsin Hamburg,Germany's second largest city,andinterviewed hygienemanagement teams, as well as physicians and nurses specifically trained in hospital hygiene who were responsible for hygiene issues across the entire hospital. In hospital A, I spoke with two hygiene specialist nurses (Elli and Carl); in hospital B, I interviewed one hygiene specialist nurse (Paul); in hospital C, I met with the hygiene physician (Dr Andress); and in hospital D, I conducted interviews with one infectiologist (Dr Krohn) and one microbiologist/infectiologist physician (Dr Spall), as well as a nurse from the intensive care unit.

In addition to the hygiene management teams, I interviewed professionals working outside the hospital, including a university scientist with a background in chemistry and microbiology who is conducting fundamental antibiotic research;

an expert at the municipal hygiene institute; two representatives of a company specializing in hygiene products; and three representatives of a city-wide network on multi-resistant bacteria, the Multiresistente Erreger (MRE) network. The MRE network essentially gathers participants in the health care sector, funded by the city's health departments, to discuss the issue of drug-resistant bacteria and its relevance to the working groups in hospitals, nursing homes, patient transport, and on an irregular basis, primary care. On the patient side, I interviewed one patient and one caregiver of an individual diagnosed with drug-resistant bacteria and was informally in contact with patients through online Facebook groups about drug-resistant bacteria, in addition to the methicillin-resistant Staphylococcus aureus (MRSA) patient organization in Germany. To guarantee anonymization, I use pseudonyms for the interviewees. There are 68 hospitals alone in Hamburg and I visited four of them. I only use interview excerpts that don't disclose any details about the specific hospital.

I analysed my material by applying *situational analysis* (Clarke et al. 2022) in conversations with constructivist *grounded theory* (Charmaz 2014). The *situational analysis* guided how I approached my data through mapping techniques, such as visualizing positions taken on hygiene, human–microbial relationships in hospitals, or risk-adapted screening. *Constructivist grounded theory* guided the coding of the data I analysed with MAXQDA, in which the core categories of human–bacteria relationships and hygiene management emerged along with the practice-oriented category of risk-adapted screening.

### **The changing nature of infections: Hospitals in the antibiotic era**

Following the widespread introduction of antibiotics in the middle of the 20th century, the hospital came to be seen as a healthy environment (Gradmann 2017): a clean place and the "best place to get better" (Condrau and Kirk 2011: 390). However, with AMR on the horizon the hospital's image changed, being again more a threat to health than a curative place as the German term for resistant bacteria *Krankenhauskeim* (hospital germ) aptly mirrors. Hospitals and AMR became deeply intertwined toward the end to the 20th century, which fundamentally changed the image of the hospital as a potentially dangerous, infectious "hothouse" (Gradmann 2017). Returning to the last century, Gradmann (2018) interrogates the shifting perceptions of hygiene and infectiology from the optimism of mastering microbial encounters to more dystopian visions of the future. The promise for both a cure and disease control, which was influential in the first part of the 20th century, changed the status of hospitals, which were viewed as places that were healthier and more hygienic than those outside the hospital walls (Gradmann 2018; Condrau and Kirk 2011). Despite changing disease dynamics in hospitals, however, including a reduction in cases of pneumonia or tuberculosis, an increase in other infections, particularly those acquired within the hospital setting, the promise of the hospital as a "beacon" of infection control vanished. Already during the 1950s, researchers complicated the promise of antibiotics for the elimination of infectious diseases with observations of how the widespread use of antibiotics drastically changed the nature of infections, including an increase in drug-resistant bacteria (Gradmann 2018: 107).

Landecker coins this changing nature of infections *the biology of history* because the materialization of socio-political processes of antibiotic use displays in the changing biology of bacteria as they develop resistances. Furthermore, the changing status of hospitals from "lighthouses to hothouses of infections" (Gradmann 2017) and inscribed visions of a controllable nature is paralleled by what Paxson (2008) elaborates on with her concept of microbiopolitics: the shift from Pasteurian to post-Pasteurian biopolitical versions of microbial encounters. While the Pasteurian approach to microbial encounters aimed at the elimination and eradication of pathogenic microbes, at controlling and mastering "nature", amid the buried dreams of a world without infectious diseases, a post-Pasteurian approach highlights the collaborative nature of human–microbial encounters and the situatedness of pathogenicity. As she notes, "post-Pasteurianism takes after Pasteurianism" in that it classifies microbes as good and bad, but the focus has shifted to make use of good microbes in dealing with the bad (2011: 118). Her examples of artisanal cheese making or the medical use of faecal microbiota transplantation (Lorimer 2020) illustrate this post-Pasteurian approach, as does the case of hygiene management in hospitals.

# **Post-Pasteurian approaches in German hospitals: The work of hygiene teams**

Today, in Germany, these epistemological shifts display in the ways that matters of infection, of microbial encounters, are enacted in hospitals. My analytic focus of hygienemanagement bringsinto focus the all-encompassing,infrastructural work enabling the curative and therapeutic logic of the hospital. Here, post-Pasteurianism articulates in the hygienic endeavours to weigh in on the uncertainties aligned to the issue of AMR: to manage bacterial compositions and avoid infection. This is the space where hygiene teams operate, between acknowledging bacterial presence and their potential to turn or be pathogenic: microbes are not understood as inherently pathogenic but might turn out as such. Thus, hygiene work revolves around evaluating and managing this post-Pasteurian spectrum of bacterial presence. And all this against a backdrop of complicated and far-reaching uncertainties attached to the use of antibiotics, both theoretically and practically: On a global level, AMR is discursively presented as a threat to global orders, and in daily personal encounters in hospitals, AMR materialises in patients who may already have resistance to substances and subsequently cannot be treated.

Every German hospital is required to have such a hygiene management team: a unit of their own that is concerned with all kinds of microbes and microbial encounters. Patients, materials, and health care professionals come with microbes, and it is the hygiene teams' tasks attend and make sense of them within the hospital setting. It is the hospital walls that give bacterial presence a specific relevance, and so does the entering body become something else: as Brown (2019) writes in reading Mary Douglas' *Purity and Danger* (1966), entering a building points to different entries, where "the bodies and buildings are awkwardly duplicated within one another, both symbolically and materially" (2019: 228). When entering the hospital, the patient's body mingles with the building, its logistics and flows, and its hygienic regime.This regime and its management entail a wide range of tasks and fields of activity. Paul, the hygienist, showed me how different the days might look like for hygiene teams: they document infections and antibiotic use on an Excel spreadsheet, adapt screening protocols or isolation plans, they carry out hygiene visits in different wards, train new staff, and advise colleagues on issues of hygiene, antibiotic use, and infection control.Everymorning, Paulis responsible for scanning the data that the wards send to inform the teams' physician, who subsequently visits the wards and meets with the team there to coordinate and agree on appropriate antibiotic treatment, as well as the necessary hygiene measures. Hours later, Paul might need to monitor the flow and quality of water, the cleaning of technical equipment and the milk for new-born infants or might be called into meetings to discuss the planning and construction of a new ward.

The threads of these various hygiene practices all come together in the hygiene management team, but many other actors are also tasked with the day-to-day maintenance of hospital hygiene. Nurses screen newly admitted patients and perform smear tests. They also wash the patients in cases of unwanted bacteria or infection. Physicians and pharmacists adjust antibiotic therapy; cleaning personnel take care of professional cleaning; and the lab analysis team reports to the hygiene team. The hygiene teams' direct contact with patients is rare, but they typically make rounds through the hospital and are on hand to advise when needed or to observe during rounds.

Hygiene practices aim to understand microbial presence and prevent infection. Hence, in hygiene management workflows from different areas of the hospital, including wards, laboratories, pharmacies, clinical practice, and antibiotic surveillance converge.The screening practices clearly sanction this assemblage of microbiological and pharmacological knowledge with clinical practice and the hospital site. As one hygienist put it, a key task is to comprehend and record what they call the "microorganism clientele", moving through the hospital. This is done through screening, detecting, testing, documenting, quantifying, and reporting bacterial compositions.

In the next section, I will look at the ways of managing the "microorganism clientele" which revolves in a post-Pasteurian fashion primarily around managing bacterial presence to avoid people getting sick of it.

# **"Preventing infection, accepting colonization"**

In hospitals, hygiene is commonly perceived as a peripheral aspect to biomedical care, something that maintains the workings of the hospital, but that also interferes and disrupts the hospital's "real" medical work (Bose 2017: 49). Hygiene teams are often located in secluded areas in the hospital and both physically in their allocated space within hospital walls as well as from their social position within hospital hierarchies, they tend to act from the margins. As to not come off as the unpopular hospital police who just criticises ways of doing (like hand washing), besides the main task of negotiating human-bacteria relations a lot of effort goes into maintaining good relations to their colleagues.

It is often difficult for patients to grasp the processes of hygiene management and how it intertwines with care and therapy, as it is the task of physicians and nurses to consider the effects of biomedical interventions on microbial encounters. Thus,many interviewees working in hygiene shared a feeling for the specific responsibility of emotional labour as well.Thus, hygiene can be seen as a collective endeavour, where the care work encompasses relations to microbes as well as humans as patients and colleagues.

If a patient like Nina is admitted to the hospital, the medical staff must make sense of the patient in several ways. It may be important to know about any underlying medical conditions, the insurance number, or the weight of the patient, and in terms of hygiene, to evaluate the risks at stake: do they carry drug-resistant bacteria, which might lead to an infection? This evaluation is crucial and one of the first steps, because it specifies the flows, spaces, and practices a patient will find themselves in. As with Nina, the reasoning behind screening for drug resistant bacteria is two-fold: to secure the place and the patient.

In both admission and discharge, bacterial presence is crucial but with different implications: upon arrival, potential pathogenic and troublesome bacteria might enter with the patients, endangering the health of the patients and hospital flows. But not every patient's bacterial composition is relevant, and hygienic risk is distributed along specific criteria. These criteria play out in the decisions made about which patients are screened for drug-resistant bacteria and who is regarded as posing hygienic risk. These criteria also mirror a way of managing uncertainties about hygienic risk, of which bodies are risky at the same time (for other patients and the hospital), and are seen as at-risk because of their bacterial compositions.

# **Admission: Situating human–bacteria relationships**

After weeks in a hospital abroad because of deteriorating health, Nina was transported back to Germany on a special flight organized by her insurance company. Her condition wasn't improving, and something had to be done. Admitted to a hospital in Germany with no diagnosis and vague symptoms, Nina was immediately isolated from other patients. Having returned from a non-European country, the reason for isolation stems from the concern that Nina might be carrying a contagious, "tropical" disease. The status of Nina as a patient and the reason for her ill health was yet unknown. Isolation was a means of practicing caution and providing safety not just for Nina, but for others as well, including other patients, the medical staff, and her family. A hospital is a densely populated place; thus, it was better to be "safe than sorry". Nina's isolation bought the physicians time to thoroughly investigate their microbial composition and the presence of possible pathogenic viruses, fungi, bacteria, or parasites without endangering other patients. (Field notes, Hamburg, 19.5.2020)

I analyse risk-adapted screening for drug-resistant bacteria as a standard hygiene procedure in German hospitals, using Nina's case. Screening, primarily done by nurses, serves to evaluate whether a patient should be tested for drug-resistant bacteria. Thus, upon arrival, the screening builds a basis for allocating hygienic risk. Although the screening protocols are provided by the hygiene management team, they are rarely executed by them.This screening process helps identify patients who might harbour resistant bacteria. If such a harbouring status is already known upon admission, if e.g., patient x was once discharged with a status of having resistant bacteria, the patient is immediately separated and isolated as hospital capacity allows. If the patient's bacterial composition is unknown, certain criteria point to the need of further clarification. It is exactly these criteria guideline that builds the risk-adapted screening protocol, which is practiced with a similar protocol across German hospitals. Ultimately, this evaluation aims to minimize two major risks: the ineffective use of antibiotics due to drug-resistant bacteria in patients and the potential risk that a colonized patient poses to other patients. Nurses decide based on a questionnaire defined by the Robert Koch Institute, the central administrative body of public health in Germany. In this process of risk-adapted screening, nurses working on the patient consider aspects of their medical but also non-medical biography and their reason for hospitalization: in some wards, such as the Intensive Care Unit, the screening criteria are broader, like wards with chronically ill or severely ill patients. In other cases, the specific bodily problem and the allocated

ward determine who is screened for which bacteria: certain drug-resistant bacteria primarily pose a problem in gastroenterology wards; therefore, screening for specific drug-resistant bacteria is considered particularly important in these wards. Evaluating the patient's biography for making sense of bacterial compositions may include information from their medical history, traveling activities, geographical locations, or their occupation.

Nina's case was unambiguous: Having been transferred from a hospital outside of Germany, and even Europe, plus her unknown condition put her straight into isolation. Transfers from other hospitals always pose hygienic risks, so patients are automatically tested and, if possible, isolated. This routine serves also as a way for hospitals to demonstrate that the resistant bacteria was not acquired in-house but somewhere else. For Nina, screening for drug-resistant bacteria was just one part of the biomedical care she received and was not something she actively anticipated or was informed about.

This observation resonates with the situation of how hospitals deal with AMR in general and the often-drawn connection made by the interviewees between health status and drug-resistant bacteria. The situation where bacterial presence is regarded as relevant within hospital walls is build up through the patients, their whereabouts, their activities, and their wellbeing:

What is inhaled outside, so to speak, is accumulated and amplified here [in the hospital]. Because this is where all the people come together. The big problem is that multi-resistant bacteria are above all a problem for people who are multimorbid. A healthy young person is usually not affected at all. (Interview Paul, hygiene specialist nurse: 479)

The hygiene specialist in the interview expresses a common argument, where resistant bacteria are problematic for specific bodies.The reasoning behind this framing is to grasp the complexities of the microbial spectrum, where the presence of drugresistant bacteria does not necessarily indicate an infection. In healthy individuals, non-resistant bacteria usually out-compete or out-grow drug-resistant bacteria after a short time and are thus no longer detectable (though they may very well be there). For immunocompromised patients, however, the presence of drug-resistant bacteria might easily lead to an infection. Thus, an infection in such individuals can more quickly become a health threat. For patients, therefore, the hospital is potentially a threatening place, where care, therapy and recovery, the function of the place itself, might be endangered by the presence of drug-resistant bacteria.