12.1 Introduction

Fitness trackers, calorie-counters, period trackers, pregnancy apps- Health and wellness apps are immensely popular and accessible to anyone with a smartphone. However, the demographics of health-based app usage reveal social and cultural differences in engagement. Indeed, users in the United States tend to be young (under 45 years of age), white, college-educated, and make more than $50,000 per year (Carroll et al., Reference Carroll, Moorhead, Bond, LeBlanc, Petrella and Fiscella2017). Lifehack.org, a site dedicated to all things self-improvement, summarizes what are arguably the most important goals of these technologies: “Apps can help you take charge of three of the most important aspects of your day-to-day life: your family, your health, and your time” (Bickov, Reference Bickov2016). While every application is different, the desire to optimize human time, health, relationships, and even fertility is perhaps best exemplified by the rise of period trackers, apps where users enter and track information on menstruation status, physical symptoms, emotions, dietary habits, and more. If, as anthropologist David Harvey (Reference Harvey2005) suggests, neoliberalism in its broadest sense is about generating the conditions and technologies best suited for capital accumulation, then the forging of new markets from historically ignored personal health data, or the management of otherwise “healthy” bodies, certainly applies. As we will explore in this chapter, the recent rise of these apps, a form of FemTech (female technology; Folkent, Reference Folkent2019) is not without precedence. Instead, the story of period tracking apps cannot be understood without unpacking longer histories of institutional reproductive management, scientific discoveries about the endocrine system and its role in behavior and physiology, and feminist activism that has resisted the influence of corporate medicalization of human health and bodily function.

Empowering people to control their reproductive (and nonreproductive) lives can transform and resist deeply entrenched societal norms and expectations surrounding the “biological imperatives” of feminized bodies. In addition, do-it-yourself health management tools like period tracking apps may teach menstruators about their bodies in a nonjudgemental, supportive space, promoting body positivity and resisting norms of shame, menstrual taboo, and bodily exploitation that have persisted in medical discourses around reproductive health. As such, period tracking apps have the potential to liberate menstruators and fertility trackers by putting the knowledge and resources to manage reproductive health in the hands of the end user. However, in this chapter, we question whether period tracking apps are truly empowering, asking who is in control and who benefits most from their usage. To answer these questions, we introduce the science of menstruation and menstrual/ovarian/uterine cycles, demonstrating how the reductionist approach to hormones and cycles marketed to individual consumers is at times scientifically inaccurate. Next, we briefly trace the origins of market-driven contemporary reproductive health management, demonstrating the entanglements of early endocrine science, eugenics, and neoliberalism in producing narratives about “correct” menstruation, individual optimization through consumerism, and reproductive management over the last one hundred years. In doing so, we identify the historical roots of contemporary “hormonal determinism,” a form of biological determinism where hormones are thought to reductively control behavior and physiology; this idea prevails in popular narratives and scientific literature alike (Daza, Reference Daza2011). Hormonal determinism, along with the cycle science used in tracking technologies, points to the ways in which ideas about, “gender, ethnicity, class, race can be ‘built into’ technology at the design phase” (Boyer and Boswell-Penc, Reference Boyer, Maia, Layne, Vostral and Boyer2010: 120). Finally, we turn to period tracking apps to analyze how hormonal determinism and its pseudo scientific underpinnings are used to convince menstruators of the need to track, manage, and even “fix” their menstrual cycles via the consumption of personalized apps, aligning with what authors Sarah Fox and Franchesca Spektor pinpoint as manifestations of neoliberal feminism embedded in ideologies of self-care, optimization, and workplace productivity (2021: 5).

We focus our analysis on a popular period tracking app, MyFlo, which claims to help users “balance their hormones” by synchronizing the phases of the menstrual cycle with recommended foods, fitness regimens, social activities, sex lives, and work. As co-authors who are a behavioral endocrinologist and a food and waste specialist, the marketing strategies and dietary centrality of this particular app speak well to our scholarship strengths. Behavioral endocrinology is the study of the interactions between hormones, the brain, and behavior, often conveyed in popular discourse as simple deterministic relationships but in reality representing complex, intersecting social, environmental, and biological relationships. Ultimately, by framing an interdisciplinary analysis of science and scientific ideals as they present within popular culture (and vice versa), we argue that period tracking apps like MyFlo draw upon legacies of hormonal determinism to reinforce and uphold neoliberal ideals and social expectations about self-actualization, optimal health, and individual responsibility as tools for constructing efficient, economically productive citizens. In addition, and equally important, period tracking apps reify the medicalization of menstruation as a site of necessary intervention. Biomedical scholars Cecilia Roberts and Catherine Waldby have suggested such forms of monitoring “[transform] some women’s fertility into a tangible asset, a material resource controlled and managed by the woman herself with the expectation of future value” (2021: 5). We argue that while many apps claim to put the “power” to control fertility and manage menstruation in the hands of the end user, instead they may represent a new iteration of reproductive management that is ultimately controlled by the forces of the market, big data, and corporate interests, rather than by ideals of user-health or education.

Ultimately, we conclude that period tracking apps, while likely beneficial for some users, fundamentally uphold societal expectations that our reproductive lives, including our fertility (or lack thereof), should be carefully tracked, managed, and understood as inseparable from our identities and social lives. To counter these deterministic ideas of gendered bodies as fixed, and to challenge the notion that our main purpose in life is to “optimize” our bodies and minds (and sometimes expressly for purposes of becoming efficient workers), we explore the “radical menstruation” movement, activism that “challenge[s] not only the menstrual status quo, skewering in particular the commercial industry they blame for disease and pollution, but also the dichotomous gender structure at the root of gender-based oppression” (Bobel, Reference Bobel2010: 99–100). We analyze the work of Klau Kinky and the GynePunks, feminist biohackers aiming to empower people with vaginas and uteri by creating resources for do-it-yourself reproductive health management, such as at-home STI tests for those who cannot afford medical visits or who face stigmatization (Bierend, Reference Bierend2015). By flipping the script on traditional bio- and life-hacking narratives around self-optimization and reclaiming biomedical knowledge in the pursuit of justice for historically and contemporarily marginalized menstruators, the GynePunks challenge us to think beyond the shiny veneer of capitalistic self-help apps to consider other ways of flourishing, caring for others, and living meaningful lives.

12.2 The Biological Basis of Menstruation and the Regularity of Irregularity

Period tracking apps commodify the complex biological and social experiences of people who menstruate, making what to some is a confusing and unpredictable process easily legible and manageable. However, this simplification runs the risk of obscuring the complexities and inherent variability of menstruation and fertility. In this section, we introduce the science of the menstrual, ovarian, and uterine cycles, demonstrating how hormones interact with these cycles and outlining the technical parameters used in cycle-predicting apps. We then complicate the use of cycle-predicting algorithms and “personalized” prescriptions for optimal cycle health by turning to the science of cycle irregularity, which points to complex socioenvironmental factors as enmeshed with endogenous biology in regulating cycles.

For those who menstruate, the routine shedding of the endometrial lining of the uterus is the result of an intricate coordination between the brain, ovaries, and uterus, regulated by the interplay of internal hormones and external socioenvironmental factors such as stress, diet, and environmental pollutants. While many users turn to period tracking apps in order to predict menstrual onset dates, menstruation is but one part of the ovarian/uterine cycle, which is typically broken into four phases: the follicular, ovulatory, luteal, and menstrual phases (Owen, Reference Owen1975). As the site of menstrual sloughing, the endometrium responds to fluctuations in estrogen and progesterone, hormones produced by the ovaries in response to hormonal signals generated by the hypothalamus and pituitary gland.

During a typical follicular phase, when a developing ovarian follicle releases estrogen, the endometrium grows, developing a rich blood supply. A surge of luteinizing hormone as the follicle matures prompts ovulation, the release of an egg into the uterine tubes. During the subsequent luteal phase, estrogen and progesterone maintain the uterine lining, creating a space for an embryo (if fertilization occurs) to implant and initiate further development. Finally, if fertilization and implantation do not occur, ovarian hormone levels decline, prompting the sloughing of the lining and its rich blood supply. Sensitive to circulating levels of estrogen and progesterone, the brain detects this drop in ovarian hormones and responds by sending hormonal signals to stimulate the development of a new follicle, returning to the start of the follicular phase.

In the simplest terms, then, menstruation is a sign that an embryo has not embedded in the uterine lining, a prerequisite for pregnancy. However, anovulatory cycles may also occur (menstruation in the absence of ovulation), as well as planned routine endometrial shedding in the absence of ovulation, which occurs with some forms of hormonal contraception. Finally, and crucially, estrogen and progesterone, as well as testosterone (often problematically conceived of as the “male hormone”) are produced by all bodies, regardless of sex, and regulate numerous physiological and behavioral functions outside of reproduction. For this reason, Anne Fausto-Sterling encourages us to resist the urge to reduce estrogen, progesterone, and testosterone to core signifiers of sex and gender, and instead to conceive of all as simply “growth hormones” (Fausto-Sterling, Reference Fausto-Sterling2000: 28).

The cyclical process whereby the brain, ovaries, and uterus participate in ongoing cycles of egg development and uterine growth/sloughing occurs on a roughly 28-day cycle. A variety of techniques have emerged to predict fertile periods corresponding to ovulation (assumed to occur at the midpoint of the cycle) for the purposes of contraception, pregnancy enhancement, self-awareness, and communication with healthcare providers, most relying on a false assumption of cycle regularity (Epstein et al., Reference Epstein, Lee, Kang, Agapie, Schroeder, Pina, Fogarty, Kientz and Munson2017; Levy and Romo-Avilés, Reference Levy and Romo-Avilés2019). The oldest method, still used in contemporary period tracking apps, makes predictions about future cycle onset dates, fertile periods, and cycle duration based on past cycle information. MyFlo takes this a step further by predicting which of the four phases a user is currently in, using “the start and end dates, and average length of your period” to indicate when they are in the follicular, ovulatory, luteal, or menstrual phases (Tracking Ovulation + Fertility, n.d.). However, while menstrual (and uterine/ovarian) cycles are routinely described as strictly cyclical and “regular” (i.e., occurring on a 28-day cycle), in reality, they are immensely variable within and between individuals. Indeed, early investigations into the consistency of cycle lengths demonstrated that 70 percent of menstruating participants experienced irregular cycles, defined as cycle differences greater than eight days (Brayer et al., Reference Brayer, Chiazze and Duffy1969). As noted by physician Eve C. Feinberg, the formulas used to predict future cycle timing, such as those employed in period tracking apps, still rely heavily on assumptions of cycle regularity, despite evidence to the contrary (Feinberg, Reference Feinberg2019). Other measures, such as body temperature and cervical mucus assessments, can add additional information about the timing of ovulation, but are incomplete without assessment of hormones, which period tracking apps cannot currently measure (Feinberg, Reference Feinberg2019).

The reasons for cycle variability among people with ovaries and uteri remain relatively obscure. While some regard variability as a normal process, others have correlated cycle irregularity with elevated risks of early death and disease, particularly heart disease (Solomon et al., Reference Solomon, Hu, Dunaif, Rich-Edwards, Stampfer, Willett, Speizer and Manson2002; Wang et al., Reference Wang, Arvizu, Rich-Edwards, Stuart, Manson, Missmer, Pan and Chavarro2020). Despite a seeming lack of clarity on the difference between “normal” cycle variability and pathological irregularity, a multitude of studies have documented variability induced by environmental factors. For example, a recent meta-analysis of published studies documented a higher incidence of “menstrual irregularity,” cycles that were markedly shorter or longer than 28 days, among workers who rotated between day shifts, night shifts, and evening shifts, perhaps as a result of disturbance to the endogenous daily “clock” as well as alterations in cortisol, a hormone implicated in bodily homeostasis and stress responses (Chang and Chang, Reference Chang and Chang2020). Stress, and its physiological sequelae, are well-known modulators of reproductive function, known in animal models to interact with the hormones of reproduction. Indeed, stress is increasingly implicated in infertility (Lynch et al., Reference Lynch, Sundaram, Maisog, Sweeney and Buck Louis2014; Santa-Cruz & Agudo, Reference Santa-Cruz and Agudo2020). Other factors that appear to influence cycle regularity and the occurrence of anovulatory cycles include smoking (Kato et al., Reference Kato, Toniolo, Koenig, Shore, Zeleniuch-Jacquotte, Akhmedkhanov and Riboli1999; Rowland et al., Reference Rowland, Baird, Long, Wegienka, Harlow, Alavanja and Sandler2002), exercise (Russell et al., Reference Russell, Mitchell, Musey and Collins1984; Sternfeld et al., Reference Sternfeld, Jacobs, Quesenberry, Gold and Sowers2002), diet (Mumford et al., Reference Mumford, Chavarro, Zhang, Perkins, Sjaarda, Pollack, Schliep and Michels2016), age (Chiazze, Reference Chiazze1968; Kato et al., Reference Kato, Toniolo, Koenig, Shore, Zeleniuch-Jacquotte, Akhmedkhanov and Riboli1999), and exposure to endocrine disrupting chemicals (Ouyang, Reference Ouyang2005; Gallo et al., Reference Gallo, Ravenscroft, Carpenter, Frye, Cook and Schell2016; Varnell et al., Reference Varnell, Arnold, Quandt, Talton, Chen, Miles, Daniel, Sandberg, Anderson and Arcury2021). As we will demonstrate below, these external factors, which disproportionately affect people of low socioeconomic status and marginalized groups, can both complicate and reduce the accuracy of period tracking algorithms, but are also largely neglected in apps such as MyFlo that instead urge users to “take control” of their bodies with diet changes, exercise, and vitamin supplements.

12.3 A Brief History of the Science and Politics of Menstruation and Fertility Management

Much of what is known about the biological basis of menstruation and fertility can be traced to the rise of endocrinology in the twentieth century, a field that was both life-saving in many ways and immediately deployed toward reinforcing existing social norms and commodifying bodily processes. As described by Nelly Oudshoorn in Beyond the Natural Body: An Archeology of Sex Hormones (1994), this history not only illuminates the technoscientific developments that enabled the identification of hormones (for example, advancements in organic chemistry that led to the isolation and identification of steroid hormones such as estrogen and testosterone), but also how existing notions of male–female difference influenced scientific inquiry and public responses to the “new” hormonal science.

Hormonal “types” and genderings have existed since the birth of endocrinology in the early 1900s. First coined as “hormones” by physiologist Ernest Starling in 1905, the discovery of blood-borne chemical messengers opened up an entirely new way of thinking about bodily physiology that had for so long focused on the role of the nervous system (Starling, Reference Starling1905; Oudshoorn, Reference Oudshoorn1994: 16). Preexisting notions of the gonads as the site of masculinity or femininity enabled such practices as ovarian removal “for the treatment of menstrual irregularities and neuroses” (Oudshoorn, Reference Oudshoorn1994: 8). These practices were now supplemented with advertisements for various potions and extracts that provided “male” and “female” hormones (e.g., Brown-Sequard’s testicular extracts to promote male vitality [Borell, Reference Borell1976]).

The notion of “hormonal balance,” widely referenced in popular discourse and a key feature of the MyFlo app, can also be traced to this heyday of endocrinology in the early to mid-twentieth century. For example, physician and researcher Louis Berman directly linked behavior, both normal and abnormal, to the secretions of endocrine glands, in contributions such as The Glands Regulating Personality (Berman, Reference Berman1921) and his own research into the endocrine basis of criminality among prisoners (Berman, Reference Berman1931; Epstein, Reference Epstein, Lee, Kang, Agapie, Schroeder, Pina, Fogarty, Kientz and Munson2017). In keeping with contemporary eugenic thought and practice of the time, Berman proclaimed that people could be classified according to innate hormonal “types,” stating that:

This quote underscores the depth of belief, at least among some people, about the fundamental hormone-derived differences between humans, as well the inextricable links between biology and status.

With respect to gonadal hormones, Berman ascribed to the idea that femininity and masculinity were linked to hormonal balance, such that:

Departing from other eugenicists of the time, Berman wanted to use hormones to elevate people of all races and social statuses: “every individual and thereby humanity as a whole would be refined for the good of all” (Nordlund, Reference Nordlund2007: 101). As far back as the early 1900s, therefore, narratives about appropriate hormone balance and innate biological/hormonal differences between sexes and races were common, alongside an emerging desire to “regulate” hormones and thereby improve health. Such themes continue today through the mass marketing of hormones and technoscientific applications that rely on this knowledge, as we demonstrate below.

The logics of “hormonal balance” and hormonal determinism persisted beyond the early 1900s until today, taking the shape of research endeavors and medical interventions aimed at identifying and “correcting” perceived hormonal imbalances. While the scope of this chapter does not permit a full detailing of the many attempts to regulate hormones in the name of fertility management, as well as the roles of activists and health practitioners in shaping the current landscape of hormonal interventions, a few examples will help illuminate the ongoing legacies of this powerful belief (which often coincided with major opportunities for commercial profit at the expense of individual consumers’ health and safety).

Though cultures around the world have long utilized a range of botanical birth control methods and abortofacients, development and introduction of the hormonal birth control pill highlights the conflicts between market forces, gender and racial essentialism, pursuit of bodily autonomy, and institutional control of reproduction and hormonal bodies, often targeted toward women of color. Originally funded and developed by Katherine McCormick, Margaret Sanger, and Gregory Pincus in the 1950s, and since modified to be less potent and reduce dangerous side effects, “the pill” consists of diverse versions of estrogen and/or progesterone taken on a daily basis. While debates about equitable access to and safety of hormonal contraception continue today, the history of the pill illuminates the eugenic aims to which this technical “fix” for managing fertility was employed. For example, early versions were tested on poor Puerto Rican women without clear conveyance of the fact that the drug was still experimental, and thus, carried potential health risks (Marks, Reference Marks2001). In addition, the pill was heavily racialized in its marketing, where:

These strategies, combined with a long history of coercive reproductive racial projects ranging from medical experimentation on slave women to forced sterilizations of black women and other people of color (Roberts, Reference Roberts1997; Washington, Reference Washington2008: Owens Reference Owens2018; Theobald, Reference Theobald2019; Luna, Reference Luna2020), highlight the systematic forces guiding access to and use of the pill, contradicting traditional narratives of bodily autonomy and free choice. In the context of period tracking apps, which are used by some to track and manage fertility, these longer histories of institutional and commercial investment in regulating hormones, fertility, and menstruating bodies thus raise important questions about whether they might function contemporarily as a new opportunity for management couched in the language of personal empowerment.

12.4 The Rise of FemTech

The sloughed uterine linings (and hormonal shifts) that generate the process and experience of menstruation have long been socially complex, even stigmatized at various points in history (Vostral, Reference Vostral2008, Reference Vostral, Linda, Layne, Vostral and Boyer2010; Bobel, Reference Bobel2019; Hasson, Reference Hasson, Bobel, Winkler, Fahs, Hasson, Kissling and Roberts2020). Technologies such as menstrual pads and tampons (so-called FemCare [Bobel, Reference Bobel2010]) have served in the “erasure” and “management” of menstruation in order to hide evidence of a natural process often deemed shameful, as well as to enable the continuation of everyday activities without disruption (Vostral, Reference Vostral2008, Reference Vostral, Linda, Layne, Vostral and Boyer2010). The mass marketing of FemCare by corporate giants such as Proctor and Gamble and Kimberly-Clark also upheld gendered notions of menstruation through stereotypically “feminine” design, often while generating environmentally destructive and unnecessary product waste (Bobel, Reference Bobel2010; Fox and Epstein, Reference Fox, Epstein, Bobel, Winkler, Fahs, Ann Hasson, Arveda Kissling and Ann Roberts2020; Vaughn, Reference Vaughn2020). Despite these critiques, the global market for FemCare is huge, with an estimated $21.6 billion (US dollars) market value in 2020 alone (Feminine Hygiene Products Market Share, Trends & Forecast, 2026, n.d.).

Amid the strength of the FemCare market, biotechnologies such as period tracking apps have likewise come to generate entirely new, extremely lucrative markets for period management. Dubbed femtech in 2016 by menstrual app Clue designer and CEO Ida Tin as the urban legend goes (Folkent, Reference Folkent2019), such technologies – ranging from period underwear to the period tracking apps we analyze in this essay – reflect a turn in market perspective, design initiative, and intended audience. Rather than managing menstrual discard, such tools often deal in the personalized data useful in managing the hormonal, reproductive, food, health, and comfort experiences of their menstruating users. Thus, information itself has become a new site for capital interest and investment. As science and technology scholars show, investment specifically in data reveals much about social beliefs in technology as global savior. Fox and Epstein argue, for instance, “Practitioners and ‘tech evangelists’ alike preach the almost limitless potential of data to tell us things about the world – with enough of it, we can cast away uncertainty and focus the fuzziness associated with forms of risk. [D]ata is seen as the answer to some of the world’s most elusive concerns” (Fox and Epstein, Reference Fox, Epstein, Bobel, Winkler, Fahs, Ann Hasson, Arveda Kissling and Ann Roberts2020: 735). Likewise, sociologists and STS scholars Laura Mamo and Jennifer Ruth Foskett’s analysis of birth control pills marketed for purposes of “regulating and minimizing menstruation” framed the concept of what they dubbed “lifestyle drugs, relatively new pharmaceutical therapies [promising] a refashioning of the material body with transformative, life-enhancing results” intended to streamline bodies for convenience and so-called life enhancement for nonmedical reasons (Mamo and Fosket, Reference Mamo and Fosket2009: 925). Similarly, the app-based forms of technoscientific body management we analyze may offer the comfort and security of increased bodily knowledge or timing control, removing what, for some, proves an inconvenient “hassle” of guesswork and hormonal fluctuation in preparing for menstrual onset. In addition, period tracking apps provide for some users a sense of privacy amid social taboos about menstruation and menstrual knowledge (e.g. Epstein et al., Reference Epstein, Lee, Kang, Agapie, Schroeder, Pina, Fogarty, Kientz and Munson2017; Karlsson, Reference Karlsson2019; Lutz and Sivakumar, Reference Lutz and Sivakumar2020), despite ongoing concerns about app-based data collection and privacy (Fox and Spektor, Reference Fox and Spektor2021). But we prefer to ask: What are the stakes of such technoscientific maneuvers to access and make efficient the interior landscapes of the human body? Who, exactly, is doing the managing and to what ends?

12.5 Managing Periods as Empowerment?

In 2018, Forbes Magazine published an article titled “How Women Can Use Monthly Periods as a Productivity Tool,” expounding on the virtues of taking control in the workplace through self-optimization to “finally shatter that elusive glass ceiling” (Mysoor, Reference Mysoor2018). Using the language of movements for political enfranchisement (but with none of the collective obligations or rights-based goals), femtech companies are redefining women’s health tools and products, as well as capital-intensive DIY biotech. To some, femtech is considered a social movement (Reenita Das qtd. in Health.com, n.p.), one that is perhaps finally putting tech in the hands of a broader range of users, even saving lives through data availability that might push back on the continued realities of exclusionary medical science. For instance, Clue suggests that their menstrual app has anonymized user data, which in turn aids in scientific discovery concerning user health and wellness experiences, especially for women where data is lacking (Tin, Reference Tinn.d.)

To others, such products reflect new capitalizations on erased or entirely ignored markets and users to construct “new” value from biological experiences or “reproductive emissions” (Kroløkke, 2018: 22). More critically, our analysis centers on conundrums of the persistence of the productivity narrative, including questions concerning the politics of data collection (who owns it, who uses it and how/when/to what ends); the stakes of intensified language of body optimization; increased focus on menstrual management; and the technoscientific reification of what we refer to throughout this article as hormonal determinism, i.e., capitalizing on the perception of hormones as predetermined, fixed, or defining of bodily experiences, rather than contextual and ever-respondent to environmental factors across the lifespan.

12.6 Analysis of MyFlo App

We begin our analysis with the popular app MyFlo Period Tracker, developed by functional nutritionist Alisa Vitti (MyFlo App – Functional Medicine Period Tracker and Hormone Balancing App, n.d.). While most period tracking apps, including MyFlo, offer standard data logging capabilities to track month-to-month menstrual cycles and associated bodily experiences, MyFlo also provides personalized suggestions to “sync” the phases of the menstrual cycle with appropriate foods, exercise regimens, romantic endeavors, work, and more. Recent scholarship has documented the ways in which period trackers reproduce stereotypes about femininity, exclude transgender and nonbinary menstruating individuals, reinforce gendered workforce narratives, and reinforce gender norms through design elements such as flowery imagery, exclusion of the ability to log cycle-relevant events such as abortion or taking hormonal replacement therapy, and more (Fox and Epstein Reference Fox, Epstein, Bobel, Winkler, Fahs, Ann Hasson, Arveda Kissling and Ann Roberts2020; Fox and Spektor Reference Fox and Spektor2021). In addition to our interest in these features, we selected MyFlo because it has ranked well as both a dietary and hormonal tracking technology in relation to the stock data about menstrual patterns. This particular app attempts to regulate both the hormonal dynamics of the human menstrual cycle experience, but also other interwoven components like diet and optimal wellness as well as symptom and/or pain management. The application marketing tactics claim statements such as: “reclaim your month [and] run your world”; “revolutionize your time management” through “hormonal clock” control, drawing upon body positive narratives of reclaiming the period from the culturally reviled to “your superpower” all through careful tracking and management.

MyFlo marketing recycles common gendered themes about hormonal determinism, but spins them as simply a matter of proper management to aid one’s “natural cycles” and “working with” one’s body for maximum productivity. Time and productivity are yoked together in hormonally deterministic ways by juxtaposing the presupposed binary ways in which “men’s hormones operate on a 24-hour circuit, [whereas] yours operate on a 28-day cycle,” despite the fact that recent reports document 24-hour rhythms in “female” hormones as well (Rahman et al., Reference Rahman, Grant, Gooley, Rajaratnam, Czeisler and Lockley2019). The broader MyFlo brand was invented by a lifestyle specialist (not a medical practitioner), who has become wildly popular with users looking to “cycle-sync,” or in other words, to optimize their body and health by pairing dietary and lifestyle trends with personalized menstrual management of the four cycle phases, all in the name of tapping into one’s “feminine energy” (Schiffer, Reference Schiffer2019). Much of the optimization narrative generated by the app and its makers and advocates shows a clear definition of health as it is connected to skin (managing acne, for instance), size (weight management, cravings), and diminishing menstrual discomforts (painful periods, bloating, water retention). Yet, as food scholar Julie Guthman outlines concerning “healthism,” ideas and idealizations about health are profoundly revealing of cultural norms and values about size, shape, and neoliberal norms of self-control, tending to emphasize or exaggerate certain bodily experiences while ignoring others (Guthman, Reference Guthman2011: 47).

App users are prompted to learn about the various phases of their menstrual experience by entering basic data from memory, and will receive regular information about “windows” of the menstrual cycle, for example, “Phase Three: 3–5 days.” Users are then provided with dietary recommendations and sex advice complete with links to schedule “fun social nights out,” and exercise suggestions: “You have energy to burn” [in this phase]. Choose high impact workouts.” These messages read almost like daily horoscopes, encouraging users to blend pop culture understandings of hormonal changes with subjective emotional well-being: “connect with your community and enjoy being magnetic!” Dietary advice underscores the link between various hormonal surge or decline phases and the “correct” kinds of foods to consume, generating a lingo that reflects the dietary optimization “now” (though not necessarily accurate), such as consuming “ovulatory foods [for the] well-being of your ovaries”; or foods that help to “remineralize your body with iron and zinc,” or that help to “stave off sugar cravings” and “flush out estrogen [from the] liver and large intestine.” The standard MyFlo app user who pays $2.99 will receive broad dietary suggestions about “bright foods” for energy and “adding nutrients” lost during menstruation. For $297, users can subscribe to a three-month program to “get out of hormonal chaos and back into hormonal FLO. Learn how to use specific foods at specific times of your cycles to put an end to the symptoms that slow you down and start feeling good all month long.” In addition to dietary advice, this subscription provides users with advice on “how to cycle sync your lifestyle – including exercise, work, and relationships” (MyFlo app).

Yet, there is a fine line here embedded in dietary, sexual, and acne advice. One approach represents wellness as multifaceted, a complex environmental dynamic affecting the body emplaced in specific contexts. But, in a context in which the broader cultural script concerning menstruation is increasingly something to manage for working menstruators, and ideas about optimal nutrition abound to perpetuate what feminist scholar Cecilia Hartley labeled a cultural “tyranny of slenderness” (Hartley, Reference Hartley, Evans Braziel and LeBesco2001), what role does this form of app-delivered hormonal determinism play in perpetuating confusing, nutritionally limiting messages about menstruation, food, and health? For instance, the idea that healthy, hormonally balanced periods are “symptom free” applies a troubling yardstick to a widely varying biological experience profoundly influenced by diverse environmental factors from stress, to chemical exposures, to synthetic food additives and preservatives. In fact, the company goes so far as to remind app users in an email, “When you’re living in sync with your cycle, you won’t dread your period every month because you won’t experience acne, bloating, fatigue, irritability, PMS heavy or irregular periods, or severe cramps.” We will return to the idea of syncing momentarily, but here first we must trouble the very conceptualization of optimal periods and nutrition as something universally definable, achievable, and feasibly broken down into digestible advice delivered via an app outside of any specific localized context.

Medical historian Lisa Haushofer has written about the turn toward “optimal nutrition” and “one-size-fits-all commercial nutritional products” as a concept rooted in biologically deterministic notions about fixed social categories: “The rise of modern nutrition science in the late eighteenth and nineteenth centuries was accompanied by a less individualistic thinking about the relationship between food and the body. [F]ood acted on the body through particular chemical constituents, which were believed to act the same in every body, regardless of age, sex, or race” (Haushofer, Reference Haushofer2017). The very idea of a universal definition of “optimal” health and wellness should be questioned as not only subjectively interpreted, but as a questionable avenue for cultural hegemony via food. This concept appears through the MyFlo app not solely in terms of generalized nutritional advice, or so-called empowering reminders that “normal or healthy” periods should be regular, painless, and streamlined. It is likewise perpetuated in founder Alisa Vitti’s own narratives about “becoming a hormone expert” concerning the ways in which hormones affect “our brains” (MyFlo app, “About,” n.p.). Though this is framed within the language of menstruator’s empowerment, gendered solidarity and “natural” remedies for period health, the push toward sync-centric language reiterates problematic ideals of biological determinism in which menstruators can take control of their body, harnessing their natural rhythms for increased work–life productivity. For instance, the app website especially highlights abstract things like “hormone flushing,” “hormone healing,” “alignment,” “synchronicity,” a sense of “community,” “sustainability” of energy, and the need to honor one’s menstrual experiences to better create life balance, all neatly delivered by way of biotechnological streamlining and cycle syncing, and all wellness factors that are supposedly and simply “chosen” by menstruators for bodily balance purposes (Supplement Guide n.p.; Flo 28: The CycleSyncing Membership, n.p.). On the one hand, users are framed as having unique, individual bodily needs, and on the other, these bodily codes are framed as universal to menstruators and able to be cracked, as one user attests in the membership video, through MyFlo optimization techniques. Whereas the experiences of so-called hormonal disalignment are affirmed through personalized testimonies on the app website and in app reviews, there is also a complicated reinforcement of common cultural scripts about menstruation as gross, problematic, or as a burden to be streamlined through diet, MyFlo supplements regimes named for the balance and restorative capacities they claim to deliver (Soothe, Boost, Sustain, Harmonize, Replenish), and cycle syncing.

12.7 An Obsession With Synchrony

The framing of well-being as a product of synchrony between endogenous hormones, diet, exercise, and work/home life carries strong echoes of menstrual synchrony. This idea, that women living and/or working in close contact synchronize their menstrual cycles, can be traced to the work of Martha McClintock, who in Reference McClintock1971 published a an article in Nature describing the “syncing up” of menstrual cycles among female dorm residents at Wellesley College (McClintock, Reference McClintock1971). This single paper spurred a decades-long flurry of attempts to replicate the phenomenon among female college student roommates, mothers and daughters, athletes, lesbian couples, Bedouin women living in multiple-female households, and “working women” (Weller and Weller, Reference Weller and Weller1992, Reference Weller and Weller1993, Reference Weller and Weller1995a, Reference Weller and Weller1995b, Reference Weller and Weller1997a; Weller et al., Reference Weller, Weller, Koresh-Kamin and Ben-Shoshan1999). As metrics to establish the “closeness” of female relationships, authors such as Weller and Weller (Reference Weller and Weller1995b) collected data on how often participants went “shopping together” and “shared clothes,” among other measures, assessments that were deeply gendered and reflected expectations about the nature of female–female social interactions. Throughout, researchers relied upon and were stymied by the requirement for participants to exhibit “regular” cycles in order to establish synchrony, attempting, for instance, to develop statistical methods for coping with said irregularity (Weller and Weller, Reference Weller and Weller1997b).

After approximately three decades of menstrual synchrony research, much of which was contradictory and heavily debated in the scientific community, a general consensus was reached that menstrual synchrony does not exist. However, popular narratives about synchrony persist. Anecdotally, students in our research group several years ago were very familiar with the idea of menstrual synchrony, despite the fact that it had been long since “debunked.” Other scholarship explores some of the reasons that menstrual synchrony retains power and meaning for people who menstruate (e.g., Fahs et al., Reference Fahs, Gonzalez, Coursey and Robinson-Cestaro2014; Fahs, Reference Fahs2016). For our purposes here, we suggest that some of the power of menstrual synchrony lies in the ability of companies and popular figures to mobilize this “ideal” toward new ends, such as MyFlo’s cycle-syncing function. By relying on long-held beliefs about the power of this mythical phenomenon to alter physiology while creating “gendered solidarity” (Fahs et al., Reference Fahs, Gonzalez, Coursey and Robinson-Cestaro2014), prescriptions to sync cycles to our dietary environments, work choices, and even to our partners (e.g., MyFlo’s option to “partner sync,” where your partner receives information about cycle status) reinforce the idea that we are out of balance and in need of optimization.

12.8 Conclusion: Framing Alternative Methods of Empowerment

What might a different way of engaging with menstrual tools and biotechnologies even look like then, and/or how might we “articulate self-care otherwise” (Fox and Spektor, Reference Fox and Spektor2021)? In their analysis of design and aesthetics of menstrual tracking apps, Fox and Epstein argue for other ways of using this technology beyond biologically fixed imaginaries: “Rather than modeling an application on a particular understanding of the menstrual experience or set of attributes, we argue future technology should opt for design defaults which avoid such assumptions by, for instance, offering adaptability in the data presented” (2020: 246). While we certainly agree that design dynamics may perpetuate restrictive ideas about the body and/or build those ideas into the very design, aesthetics, and data outcomes of app technologies, our own analysis takes issue with the ways in which menstrual apps reflect neoliberal ideals of optimal health and intensified bodily adaptation to landscapes of capital worth. Yet ours is certainly not a false idealization of the so-called pure, the natural, or the antitechnological, taking to heart Donna Haraway’s iconic reminder of our constant entanglement with technological and nonhuman worlds (Haraway, Reference Haraway1985, 2015) or Alexis Shotwell’s reminder (vis-á-vis Anna Tsing) that living is never “pure” as we are all part of blasted regimes and disturbance landscapes (Shotwell, Reference Shotwell2016: 9). We do, however, wonder after other imaginaries of DIY and menstrual biohack potential that attempt to sidestep the efficiency model narrative so embedded in MyFlo’s technological veneer.

One alternative example is the work of Klau Klinky and the Spanish collective Gynepunks, which draws upon the long history of feminist DIY initiatives (such as the Women’s Health Movement in the United States) for information sharing and medical health empowerment through the blending of anarchist, punk, and feminist knowledge-building with collectively shared biohacker spaces to explore, learn, share information, and tinker together. The Gynepunks are known for hacking common gynecological tools to give users the means to control their own health, with a focus on detecting cervical cancer, yeast infections, and sexually transmitted infections without the need to engage with the medical establishment. For example, the Gynepunks have pioneered instruction manuals for creating DIY microscopes and centrifuges, as well as 3D-printed speculums, with the aim of providing freely accessible health resources and product assembly instructions to all (Bierend, Reference Bierend2015). As a counterpoint to MyFlo, the work of the GynePunks stands out as an example of the pursuit of bodily autonomy and knowledge for those who have been historically harmed or erased by the medical establishment, including people of color, transgender, and nonbinary folks. Here we do not see any references to enhanced productivity or gendered hormonal balance, but instead the aim to make “safe spaces to practice and share the skills and knowledge of basic gynaecological healthcare, both online and in physical spaces” (Samms, Reference Samms2019). Whereas “the subsumption of reproductive labor” has always historically been embedded in attempts to manage menstruation for capitalist accumulatory ends – from early gynecological experimentation on slave women, to pills, to apps that streamline menstruation – Gynepunk’s goals, in contrast, are decidedly collectively oriented and anticapitalist in scope (Thorburn, Reference Thorburn2017: 164). On this concept of more collective framings, Fox and Spektor suggest that whereas neoliberal feminist subjectivities tend to “lean in” to corporate management goals appealing to middle-class ideals of self-improvement and upward mobility through self-oriented optimization (2021: 5), more inclusive framings might flip the individualized tracking script to advocate for “collective data gathering meant to advocate for fairer working conditions across role or status”; or as a tool for workers to “[hold] companies accountable [for] improved compensation and liveable conditions” (2021: 15). Thus, tech that serves as a tool for repairing harmful medical histories used against marginalized populations; tech used for shared or collective knowledge building, accountability, or more just workplaces may prove distinct from tech that is motivated by data collection, middle-class ideals of self-optimization or capitalist biovalue goals. That said, in the post-overturning of Roe v. Wade America within which we as authors live and work, our hesitations about the data use component of these technologies remains strong. Such personalized menstrual and fertility information may now prove legally incriminating to app users living in states or nations with sanctions against those seeking abortions as basic healthcare. Thus, an exemplary political motivation for such data could include anti-abortion surveillance. Given such misogyny, we caution users to inform themselves of their legal contexts, of the data storage policies of the apps they use, and to carefully consider how, if and in what capacity they wish their menstrual or fertility data to be accessed and utilized beyond self-tracking (Elliott 2022; Torchinsky 2022). Mamo and Fosket have argued for reframing biomedicalization power dynamics, expressly asking “how and under what circumstances women are able to appropriate technologies to reshape their bodies, minds and practices as they see fit” (2009: 941). We might similarly apply this lens to other possibilities of menstrual app technologies that move away from attempts to interiorly fix or manage menstruating bodies, or to transform (ultimately unsick) bodies otherwise deemed hormonally “disturbed,” “unbalanced”, or just plain fat-shamed.

13.1 Introduction

This chapter compares the laws, policies, and culture surrounding childbirth in two countries: the United Kingdom and Sweden. Based on a framework of human rights, it argues that Sweden is superior to the UK in its handling of childbirth in nearly every conceivable respect: pregnancy care, the birthing experience, postnatal care, maternity and parental leave, childcare, and gender equality. I came to think about the comparisons between these two countries’ treatment of childbirth based on various coverage of two crude, but fundamental, statistics about birth: maternal and infant mortality. Why were the UK’s maternal and infant mortality rates higher than they had been in recent memory, while Sweden’s were steadily, and exceptionally, low? From what follows in this chapter, the adherence to austerity and neoliberal policies is the primary culprit of excess mortality among women and infants in the UK, as compared to its Nordic neighbor (Zylbersztejn et al., Reference Zylbersztejn2018: 2016).

At first blush, it’s reasonable to feel that the UK’s and Sweden’s treatment of childbirth are not apt for comparison. Sweden is a much smaller country than the UK, has a more homogenous population, and comes from a distinct Nordic tradition that streamlines gender equality across Swedish law. Nonetheless, there are a few good reasons to pause and consider these two jurisdictions together. There is an outpouring of evidence in the UK that poverty for women and children is on the rise, indicating “a monumental shift” toward “a deteriorating quality of life” in Britain (Goodman, Reference Goodman2018). It didn’t have to be this way. The UK used to have a welfare state, and while it was never of the same magnitude as that in Sweden, it was life-changing for children like Mark Blyth, a Scottish academic, who grew up with it:

Childbirth, “the absolute centrality of human reproduction,” is a fitting window into the effects of one country’s choice to do away with the welfare state, and how another has sustained it (Williams, Reference Williams1979: 146–147). In the 1980s, Prime Minister Margaret Thatcher made austerity – a cross-sector government policy of slashing benefits and public services in order to balance the budget and, theoretically, put more money into the hands of private companies and citizens – the hallmark of her rule. Thatcher’s “trickle-down” economics held that “wealth generated by the giants would benefit the small” (Brown, Reference Brown2015: 213). But in 2010 the government ruled by the Conservative Party took austerity policies a step further, praising budget cuts as a “virtue” and a “shared sacrifice” (Brown, Reference Brown2015: 213; Mueller, Reference Mueller2019). No longer were austerity policies staked exclusively on a supposed scarcity of resources or in the name of efficiency (in the world’s fifth largest economy, no less): austerity was an end unto itself. Nonprofit organizations, charities, and private companies, austerity proponents said, would fill in the gap of a leaner government bureaucracy, ultimately making government and society more efficient and – more importantly – more responsible (Mueller, Reference Mueller2019).

What have austerity policies and values meant for women giving birth in the UK? Maternity care and childcare operate based on market competition through a mix of private and public actors. Pregnant women and new parents are now “consumers” in this market, responsible for bargain hunting for everything from a maternity clinic to a childcare program (one they can’t realistically afford in any event). Like the government services available to them, pregnant women’s and mothers’ legal rights are threadbare due to a lack of enforcement. Workplaces maintain “flexible” leave policies that effectively force women either back to work prematurely or into joblessness. One of the dominant implications in the neoliberal view of childbirth is that women are “natural” caregivers, who should rarely be working outside the home in the first place, and therefore should not be compensated for any subsequent childcare.

By contrast, Sweden supports women’s overall childbirth experience through the twin values of social welfare/humanized care and gender equality. Pregnant women’s and parents’ legal rights to, and the availability of, continuous health care, maternity leave, and parental leave are so engrained in Swedish society that it is much more common for employers to celebrate workers’ pregnancy and parental leave than to shame them for it. Paid parental leave is decidedly inflexible in Sweden – that is, new parents must take a certain minimum amount. And while these government programs are not cheap – Sweden has one of the highest effective marginal tax rates in the world – the benefits to women, children, and families are both concrete and incalculable. Sweden boasts some of the lowest maternal and infant mortality rates, as well as some of the lowest child poverty rates in the world, while the UK is exhibiting the abysmal outcomes (of maternal and infant mortality, and child poverty) usually only seen in one OECD country notorious for its family-unfriendly policies: the United States. This chapter highlights how Sweden has maintained these outcomes for women and newborns, while the UK has all but ignored “the dramatic decline in the fortunes of [its] least well off” (Office of the High Commissioner, 2018: 1).

13.2 A Tale of Two Births

The two stories of childbirth described below exemplify the experiences of low-income working women through: health care during their pregnancy and birth; time off from work during and after the birth of their child; and the support given for their newest family member by their respective governments, such as postnatal care and direct payments.

13.3 A Human Rights Framework for Childbirth

A foundational principle of human rights law is to protect the dignity of both individual and collective persons. The Convention on the Elimination of All Forms of Discrimination Against Women (CEDAW), a gender equality human rights treaty to which nearly every UN member state is a party (including the United Kingdom and Sweden), is based on “the dignity and worth of the human person” (CEDAW, 1981: Preamble). Both CEDAW and the European Convention on Human Rights (ECHR) (of which the UK and Sweden are also state parties) obligate parties to act affirmatively to ensure human rights are respected within their jurisdiction (ECHR, 1950: Art. 1; CEDAW, 1981: Art. 24). This means centering the experiences and needs of women first and foremost in childbirth, and ensuring that the state’s treatment of childbirth does not discriminate against women or against particularly vulnerable groups of women (like immigrant women and women of color) by leaving them worse off than men. States cannot realize women’s full dignity without gender equality with men, and childbirth continues to play a large role in perpetuating such inequalities. As the preamble to CEDAW states, “the role of women in procreation should not be a basis for discrimination” (CEDAW, 1981: Preamble).

The UK’s austerity approach to childbirth is, at best, disinterested in issues of human rights and gender equality, and at worst, actively working against them. By contrast, under a legal and cultural framework that specifically focuses on women’s human rights and children’s well-being, Sweden actively works toward gender equality.

13.4 A Case Study in the Austerity Approach to Childbirth: The United Kingdom

13.5 A Case Study in How We Should Treat Childbirth: Sweden

13.6 Conclusion

One of the curious aspects of the market imperialism described in the Introduction to this book is that many of the methods employed to such an end are antithetical to the goals of neoliberalism itself. In the context of childbirth, a purist (and cynical) neoliberal goal of childbirth is the (re)production of human capital, that is, the need for more and more workers in order to support the economy and care for an increasingly aging population (see Chapter 15, “How Should We Care for the Elderly?”). But many of the neoliberal policies here, like cutting the budgets of health and other services and limiting payments for families with more than two children, have the effect of decreasing human capital – either by increasing mortality rates for women and infants, or by making it more (usually financially) difficult for women to become pregnant and give birth in the first place. These strange bedfellows also belie a truth about Sweden’s childcare policies: it too is not immune from neoliberal thinking in childbirth. Consider, for example, that the entire parental leave and childcare structure is focused on getting both mothers and fathers back to work and keeping them working, as well as ensuring the (re)production of human capital through policies that support more births in general. This isn’t to say that this type of neoliberal thinking about work in Sweden is necessarily bad – it’s to point out that even social democratic/socialist liberalism states like Sweden have a mix of welfare-based and neoliberal-based policies, even for issues as fundamental as childbirth.

Sweden is not immune from the neoliberal default to increase state savings either. In the rural area of Sweden’s Sollefteå, the municipality decided that the only maternity unit would need to be closed down as a “cost-cutting” measure, forcing thousands of women to drive at least 100 km in order to access maternity care (BBC, 2017). The move sparked outrage after at least three women were forced to give birth in transit – in a car, a fire engine, and a taxi – while making their way to the nearest maternity ward (Branford, Reference Branford2017). This may have saved the municipality a lot of money, but the human “costs” – to pregnant and birthing women and infants – were much more upsetting.

Hopefully, this chapter has shown that when it comes to childbirth – which, as a gentle and obvious reminder, is necessary for the continuation of the human race – we should strive for policies that are, on balance, based more on welfare than individual responsibility and competition. A welfare approach to childbirth recognizes fundamental principles of human rights: the respect for women’s equality and dignity, and children’s health and well-being.

14.1 Introduction: Granola Parents, Cheese Puffs, and “Hamburgers with Real Hamburger”

When I first met Barbara, an administrator at an Atlanta, Georgia school that I call “Hometown Charter,” she told me that parents there tended to fall into two distinct groups: they were either “green freaks” and “healthy food freaks” – also known as “granola parents” – or they were the type of parents who brought in cupcakes with blue frosting from a local grocery store chain for children’s birthday celebrations and jugs of inexpensive, highly processed cheese puffs for classroom snacks. With this scheme of categories set out, Barbara made clear that the school’s own nutritional priorities aligned more with those of the “healthy food freaks”; teachers encouraged parents to bring in items such as fruit, cheese, and crackers rather than highly processed or sugary snack foods. The job of school staff, as Barbara saw it, was to help educate people about what was best for their kids without offending them. She noted, too, that differences around food choices were connected with differences in “socioeconomics.” Yet she believed some adults at Hometown who might otherwise object to the sugary and processed foods being brought in by other parents tried to “honor the cheese puffs for the children’s sake” (Patico, Reference Patico2020: 152–153).

When the school later made plans to hire a new chef – someone who would be an employee of the school itself, rather than a contractor similar to the one they currently used for their cafeteria lunches – another administrator explained to me that in her view, the best candidate for the job would be someone who had experience in food service at Whole Foods (a grocery store chain with a focus on organic products and generally considered to be expensive) or a similar establishment, yet also was aware that children preferred simple and familiar foods. In her view, children needed “hamburgers with real hamburger… [When] it’s done in turkey, it looks different and so then the kids are a little skeptical of it.” The foods offered children at school had to be “taster-friendly… Just really making it more like it’s a destination restaurant down at the end of the hall [so that they would say,] ‘Yeah, I’m going to lunch and I’m going to buy lunch today’.” In this way, children might be enticed to choose school lunch rather than bringing lunches and snacks from home, and the school’s lunch program would become more popular and sustainable.

Hometown Charter is part of the Atlanta public school system, but as a charter school, it also stands somewhat apart from that system.The school is free to attend but follows a distinctive, educationally progressive curriculum and has greater independence to make decisions on issues from course offerings to lunch menus, albeit within certain state and federal guidelines. While many public school districts, including Atlanta Public Schools, employ large contractors to provide school lunch service, Hometown was able to hire a separate, smaller contractor – and later its own in-house chef. As an anthropologist conducting immersive ethnographic research at Hometown, I spent countless hours in informal contexts of participant-observation: helping out in the elementary school cafeteria, helping to teach classes in the middle school, attending PTA meetings and parent discussion groups, and in some cases, sharing meals with families in their own homes, as well as conducting in-depth interviews. As I became more deeply familiar with Hometown’s community, I tracked the ways in which adults (as well as children themselves) perceived and enacted social differences through food choices and food talk; and I returned often in my mind to Barbara’s notion of “honoring the cheese puffs for the children’s sake.” What did this statement suggest about the things considered to be at stake in adults’ conflicts around children’s food? And what did deliberations about proper chefs and lunch programs reveal about the practical struggles and ideological assumptions underlying collective and institutional decisions about food for children?

To be sure, these discussions were about food quality: Barbara and like-minded parents considered “natural,” less processed foods to be more wholesome and nutritionally desirable for children than with artificially dyed cupcakes and cheese puffs. Their concerns are best understood against the broader background of an industrial food economy in which many US adults worry about whether the content of foods will be harmful to their children – whether because of hidden toxins or hidden sugars – given a relatively poorly regulated food production system (MacKendrick, Reference MacKendrick2018; Patico, Reference Patico2020). Middle-class parents devote resources of time, money, and knowledge to protecting their children from these potential harms. Those resources are, of course, inequitably available, and Barbara recognized as much by pointing to the role of “socioeconomics” at the school. Moreover, she seemed to suggest that middle-class, nutrition-conscious adults at Hometown often refrained from judging (or at least expressing judgment about) food choices they found suboptimal. These adults were not concerned only about their own children’s well-being, then, and not only about food quality, but also about the maintenance of a larger community fabric and the preservation of positive relationships across social and economic difference.

Such dilemmas are entangled with parents’ and consumers’ experiences of living in a neoliberal economy, and as such are underlaid by specific kinds of assumptions that are interrogated in this volume. In the context of neoliberalism, not only do parents bear the burden of protecting their children from what they understand to be the dangers of a poorly regulated industrial food economy, but they also tend to accept implicitly that managing these burdens is rightly part of the task of parenthood: feeding children well is the responsibility of individual parents who make discerning consumer choices and resource-intensive investments for the benefit of their own families, rather than primarily a shared, societal project. Indeed, in neoliberal settings, individuals are expected “to make choices about lifestyles, their bodies, their education, and their health … It is not simply ‘consumer sovereignty’ but rather a moralization and … a regulated transfer of choice-making responsibility from the state to the individual in the social market” (Peters 2016, 301; see also Ganti 2014, 94–96). Even relatively collective endeavors such as school food programming tend to be guided by ideas about consumer taste and agency – not only adults’, but also children’s – as the story about Hometown’s search for a new school chef illustrated.

This chapter does not offer any simple answers to what children actually should eat. It does interrogate, drawing from my Hometown study, how conversations about children’s food in the US problematize individual parents’ comportment and consumer choices and, in the process, end up sidelining some of the same interlocutors’ ideals of social inclusion and equity. As we shall see, certain values and assumptions are easily smuggled into conversations about food, health, child socialization, and inequality, in ways that often go unnoticed so that even those who care deeply about both their own children’s bodies and efforts toward broader social justice end up pitting one concern against the other. What role do neoliberal assumptions about personal responsibility for individual well-being play here, and how might reflecting on this invite us to think about alternative approaches to the well-being of children and of the social fabric – especially given that people like Hometown parents have priorities for their communities that seem ill-served by the individualist consumer approach to children’s food?

Following discussion of these matters at Hometown, we shall turn to sociologist Janet Poppendieck for case study examples from another US setting (a universal free breakfast program in Rhode Island) as well a social democratic one (Sweden’s free lunch program). Most recently, measures taken in the context of the COVID-19 pandemic in the United States have created new openings for school meal reform, though at this writing, the future of those programs is unclear. Universal school breakfast and lunch programs demonstrate how a state-led approach to children’s food provisioning has been shown particularly, though not exclusively, beneficial to children of lower-income households – even if issues of food equity are far more complex to address than the simple provision of free meals can achieve.

The primary aim of this chapter, however, is not to outline specific policies to be implemented so much as it is to interrogate certain ideas about who is responsible for feeding children properly and why. To do so, we will consider broadly how responsibility for food quality at large – and for children’s food in particular – has been framed differently in settings where neoliberal assumptions about the respective roles of the state and of individual parents are less hegemonic, or where they have been actively challenged. For although neoliberal political economy is powerful around the world, it remains true that such assumptions do not hold in every contemporary cultural and market context equally. Even as we think both critically and empathetically about the situations in which parents and administrators find themselves, recognition of such variability should open the way for thinking about alternative framings.

14.2 Neoliberal Framings of Food Responsibility in a Diverse Urban Community

The school I call Hometown is located close to downtown Atlanta, Georgia, in the United States, in an area once home primarily to lower-income, African Americans but increasingly also to relatively affluent, often white home owners. Hometown is a public charter school serving elementary through middle schoolers (kindergarten through 8th grade, ages approximately 5 to 14) and is free to attend, though admission is governed by a lottery due to high demand for spots. The school is known for its progressive educational approach, with significant attention given to socioemotional development and project-centered learning. Circa 2013 when I was in the thick of my research there, school statistics indicated that the elementary grades were about 57 percent Caucasian (the term used in their official records) and 30 percent African American, while middle schoolers were 50 percent African American and 33 perecnty Caucasian; across the board about 10–11% identified as multi-racial.

As one measure of the economic circumstances of the school’s families, in 2014 about 20 percent of the school’s families qualified for free or reduced lunch (FRL), meaning that the school’s lunch program was supported partly through tax monies (which provided subsidies for meals for students from lower-income households) and partly by per-meal payments by self-paying students (and faculty). Under the Healthy, Hunger-Free Kids Act of 2010, schools where more than 40 percent of students come from households already enrolled in government assistance programs such as SNAP (Supplemental Nutrition Assistance Program) can supply free meals to all students (Blad 1 June 2021); Hometown had fallen significantly below that level at the time of my fieldwork, though just a few years before the FRL rate had been in the 40 percent range. The downward shift seems to reflect overall changes in the demographics of a gentrifying neighborhood as well as comparatively high demand for the spots by white and relatively affluent residents in the area.

Over the course of my research (2011–2015), I interviewed fifty-two adults (forty-two women and ten men), both parents and staff members, of whom thirty-eight self-identified as white, Caucasian, or European-American (including three who also identified as Chicano or Hispanic), nine as Black or African American, and five using other racial or ethnic categories (such as Filipino American or Mexican American). Their household incomes, when known, varied from $12,000 to $340,000 per year, with a median of $104,000. Thus while the interview group overall skewed more white and affluent than the school’s population due to participant self-selection, some of Hometown’s economic and racial diversity was reflected there. As a generalization, I refer to this parent group as “middle class” not only to reflect their median incomes, but also because of their high levels of education, irrespective of income. Most if not all were college-educated, and the group included professionals with graduate degrees (such as lawyers) as well as career teachers, stay-at-home parents, and others.

Many of my interlocutors at Hometown expressed attitudes and assumptions that, over the course of my fieldwork, I came to understand as exemplifying a certain kind of “neoliberal responsibilization.” Often critical of the industrial food complex, they devoted a great deal of attention, information-gathering, and school volunteer hours to the attempt to ensure that what their children consumed was optimal for their ongoing physical health as well as their behavioral modulation. Further, a theme of shared concern among parents and teachers was that children had limited (though hopefully developing) capacities to “self-regulate” their behavior, including their eating: for example, to moderate their desires for sugary or junky snacks in favor of foods understood to be nutritionally beneficial. Though children’s limited capacity for self-regulation (and the desirability of the same) may sound like truisms to many Americans, the concept has been thematized particularly in the fields of child psychology and development and increasingly popularized in the late twentieth and early twenty-first centuries, paralleling calls for workers’ self-management, flexibility, and emotional intelligence in the neoliberal labor economies of the United States and beyond. At Hometown, parents and educators felt responsible for teaching skills of self-management and for regulating children and their consumption in the meantime, often not only through direct interaction with children but also through activities such as participating in school committees or complaining to school authorities about vending machine and cafeteria offerings (Patico, Reference Patico2020). Yet as we shall see, Hometowners’ efforts and the principles and priorities that drove them were sometimes mutually conflictual.

Many of these middle-class parents were indeed highly nutrition-conscious; they talked about favoring “real” and natural foods over highly industrialized and processed ones, and they worried about high levels of sugar and how this could negatively impact their children’s weight, behavior, or mood. Some invested time in tasks such as growing their own vegetables; others preferred to buy such products from grocery stores or from local CSAs (community-supported agricultural enterprises, in which customers pay a set subscription rate to receive weekly or monthly boxes of produce from local farms). During the year of my most intensive fieldwork – and just after my conversation with the administrator about a new chef – the school indeed developed an exceptionally high-quality lunch program that focused on fresh foods, some of it locally acquired. It was orchestrated by a professional restaurant chef who managed to balance federal regulations and budget concerns with his own conceptions of healthful, appealing, and varied menus. Many parents seemed to applaud the new program, but there was still concern among them at times about less than ideal foods being served at classroom snacks, after-school groups, and extracurriculars.

In fact, despite Barbara’s comment about “honoring the cheese puffs,” items such as rice krispie treats being made in an after-school program or brightly colored, sugary breakfast cereal being brought for a school snack sometimes were cause for comment and consternation by parents and teachers. Although adults sometimes talked about training their children’s tastes and how to do so effectively, there also was some general sense that children were naturally disposed toward sugary, mild-tasting, familiar foods and would always gravitate to these if available. It was on adults, then, to provide foods that were more nutritionally adequate and to socialize children into eating these foods habitually and ultimately voluntarily – though it was also accepted that sometimes sweet treats such as birthday cakes were a normal part of childhood and in that sense, to some extent desirable. Thus nutritional ideals and notions about “normal” childhood and necessary indulgences were sometimes in tension with one another, with caregivers seeking to moderate children’s eating without eliminating what were often held to be natural childhood pleasures.

Similar tensions are evident in school lunch programs around the nation, exacerbated by the economic exigencies faced by school administrators. Sociologist Janet Poppendieck (Reference Poppendieck2010) interviewed dozens of US school food service directors, managers, and workers, as well as speaking with legislators, local officials, and food activists, to document the struggles faced by cafeteria managers who are working to meet federal nutritional guidelines on limited school budgets.Footnote ¹ Across the United States, discounted meals are made available to students who qualify based on their household incomes – about half of US students, according to recent statistics – and these programs are supported by tax-funded governmental programs.Footnote ² To make ends meet and establish any kind of economy of scale, schools need students to participate in their lunch programs rather than opting out and bringing packed lunches from home, whether they are self-paying or drawing tax funds to the school by qualifying for FRL – hence the apparent necessity for cafeteria menu planners to appeal to children’s consumer tastes. In some cases, “special” (not necessarily more healthful) items deemed more appealing are offered at an extra charge, in vending machines or in special lines, by lunchrooms to those students who can afford them. School-provided lunches often carry social stigma in the US, particularly when lower-income children who receive free and reduced-price lunches are separated out in lunchrooms from children who bring their lunches from home or opt to buy the more expensive lunch items many cafeterias offer (Poppendieck, Reference Poppendieck2010).

This separation and stigma dynamic was not particularly salient at Hometown, as far as I could tell. Perhaps about half the students took advantage of the school lunch program on any given day, few “extra” food items were available on campus, students of varying income levels participated in the school lunch program, their seating did not depend on what kind of lunch they had, and the charter school was able to use flexible hiring and ingenuity to create a relatively appealing lunch program for both paying and non-paying students. Nonetheless, administrators found themselves performing tenuous balancing acts to provide food that satisfied the requirements of legislators, parents, and students in an economically feasible way. As we have seen, the challenge was to provide what parents and staff thought to be high-quality nutrition and to cater to children’s consumer tastes for the sake of children’s pleasure and their perceived distinct natures – and ultimately in order to support the bottom line of the school lunch program by getting children to want to purchase the meals. The school’s new chef, lauded by some parents for providing thoughtful menus of scratch-made food, emphasized his own mindfulness about students’ consumerist leanings when he remarked that he used xanthum gum to thicken his teriyaki sauce because he knew it was important that it should feel familiar to children – especially those who were particularly skeptical of school lunches. Xanthum gum, he said, gave the same mouth feel as the teriyaki sauce these children might have tried at shopping mall food courts.

Not only did school administrators wish to please children in order to meet a bottom line, but adults at Hometown were more broadly concerned about what constituted adequate control versus over-control when it came to children’s food. This balance had implications for the way people talked (or didn’t talk) about social inequality in the context of children’s food. On one hand, parents gave many examples that reflected the importance they attached to carefully managing their children’s intake of food – as a matter of general health, sometimes for the sake of helping to regulating mood and behavior, and generally as a means of teaching children self-control and self-management. Parents’ narratives often placed implicit emphasis on the importance of caring enough to pay attention to these things and to educate oneself about nutrition. These ideals are connected tightly with fundamental understandings about the importance of individual choice in the US context, where raising children is often considered a

Parents and staff at Hometown also spoke about the high level of parental engagement that was both expected and carried out at the school, with parents not only bringing in snacks for the children’s classes to share but also helping out with tasks during the school day, working to organize fundraisers, and spending money at them. Indeed, people at Hometown tended to feel that “engaged” parenting was an unquestionable good and part of what made Hometown a better school – or at least more desirable to them – than the local non-charter elementary school whose population was, overall, lower-income and less white than Hometown’s. At the same time, somewhat contradictorily but in keeping with the importance attached in the US cultural context to autonomy and self-determination, adults – in their passingly critical comments about “helicopter parents” or their insistence that their efforts with their own children’s nutrition were measured and not excessive or “crazy” – expressed the understanding that to excessively control or restrain another person’s choices, even a child’s, was distasteful, perhaps even morally suspect. The overall message was that one needed to be diligent and “engaged” but not overly controlling: a delicate and elusive balance.

Middle-class parents’ concerns for their own children’s well-being and for the foods that enter their bodies are reasonable in the context of industrial food production and poor regulation (MacKendrick, Reference MacKendrick2018), but looking at these problems through a moralized lens of parental approach – in which one must seemingly strike a perfect balance of careful regulation yet not bear a “controlling” persona; in which one must socialize children into autonomous self-regulation but must not excessively constrain their consumer choices in the meantime; and in which judgments about “care” can obscure the vital role of resources – does not much diminish (even more affluent) parents’ worry and feelings of vulnerability around food and parenting, and it can undermine sincere efforts toward social inclusion. Many, though not all, parents prioritized maintenance of diversity in income levels when they debated updates to the school’s lottery system (which neighborhoods would be given first priority to the school?); and they often expressed sensitivity to the financial and logistical constraints experienced by lower-income households within the school community. All of these implicitly conflicting judgments about food, care, and social equity were folded into their attempts to “honor the cheese puffs.”

Tension between critiques of industrial food production and (sometimes occluded) matters of socioeconomic inequity is not uncommon in popular, even progressive discourse about food in the United States. For example, Julie Guthman (Reference Guthman2007) has pointed out that Michael Pollan’s highly popular book The Omnivore’s Dilemma ultimately champions the making of informed individual choices about food rather than encouraging strategies such as writing to Congress about the harm wrought in the industrial food system by government corn subsidies, or to the FDA about food additives. This stance leads attention away from structural inequality and emphasizes the role of personal knowledge and choice, reinforcing the “highly privileged and apolitical” idea that some people are simply more enlightened than others (for example, those who eat “bad” industrial food or are obese) (2007: 78–79). In the realm of children’s food in particular, this places the onus of responsibility for desirable outcomes primarily on the shoulders of individual parents working for their own children, each with highly variable resources and constraints, as opposed to the pooled resources of civic institutions or collectivities.

What are the alternatives to thinking about children’s food in terms of the individual choice and prerogative to avoid harm to one’s own individual child through great investment of time and resources? At the more socially coordinated level of the school lunch program, are there other options than feeling beholden to children as individual consumer choice-makers in order to make the bottom line of such programs work?

14.3 Other Approaches to Food Responsibility

The answers to these questions may lie in structural reforms as well as philosophical and moral reframings. If many middle-class parents are highly absorbed by the problem of seeking to ensure that the foods and other items their families consume do not contain harmful amounts of toxins, my intent here is not to question the wisdom of that goal but rather to imagine shifting the responsibility for those tasks away from individual parents and toward governmental and corporate bodies. This could take various forms, including greater investment of resources in, and transparency around, mechanisms for the assessment of health risks in food production (MacKendrick, Reference MacKendrick2018: 156–158). In the case of school lunch reform, as Allen and Guthman (Reference Allen and Guthman2006: 412) have put it, “rather than concede the inevitable disparities of devolution, public funding and state support should be used to effect improvement across the board for all children, not just those who happen to be in ‘progressive’ or affluent schools” where privately funded Farm to School programs – or carefully planned menus such as those offered by Hometown’s unusually innovative chef – present localized, partial solutions that are not easily scalable (see also Poppendieck, Reference Poppendieck2010: 243).

Instead, Poppendieck argues that all public school children in the United States should receive free lunches as a matter of course, and that this initiative could and should be funded by the federal tax structure. As noted above, US school cafeteria managers struggle to balance conflicting pressures and may cater to children’s perceived consumer tastes in the interest of balancing their budgets. Poppendieck frames this strategy as an “abdication of adult authority and responsibility” and a failure to make schools “places where democratic ideals and beliefs are built into the fabric of the day,” that is, where fair treatment is given to students regardless of class, race, or other forms of difference (Poppendieck, Reference Poppendieck2010: 264, 271).

To demonstrate what is possible, Poppendieck presents the success story of a dedicated group of activists who worked to bring free universal breakfast to a school in Rhode Island, and eventually to all schools in the state with a 40 percent or higher FRL rate. The Campaign to Eliminate Childhood Poverty in Rhode Island faced significant opposition in this effort, but it began by simply distributing muffins in the school yard with the help of a sympathetic school nurse. Slowly, the activists were able to convince school districts to formalize and expand the universal free breakfast program, as it demonstrated clear success. Participation among students was high, which meant that reports of behavioral problems were down because the students were no longer hungry at school. High participation also meant that the food contractor was happy, as it was making more money.

Strikingly, participation numbers were up not only among families who previously had had to pay for their own meals, but even more so among families who previously had qualified for free or reduced-price meals. In schools with universal free breakfast in Rhode Island, 50 percent more children who qualified for FRL ate breakfast as compared to those at schools that provided free breakfast only for those who qualified by income. In other words, when meals were free for all, lower-income students ate more – a result Poppendieck attributes to the lifting of stigma that came with universalization (Poppendieck, Reference Poppendieck2010: 249). Now FRL and paying students were not separated, spatially or otherwise, in the context of the school meal; and no staff member caused embarrassment by drawing attention to students’ unpaid bills, since no one was charged in the first place (ibid.: 253).

The implication of this is that relatively diverse urban districts stand to make the biggest gains in student participation with universalization, as opposed to either the wealthiest schools (where there is less need) or the ones with the highest rates of FRL (where the stigma attached to poverty may be a less salient factor, and which were granted eligibility for universal free meals by the 2010 legislation mentioned above) (Poppendieck, Reference Poppendieck2010: 254). Hometown is just this kind of urban district.The exclusionary, segregated cafeteria atmosphere Poppendieck describes as common in many public schools did not seem to exist there; yet, as we have seen, even in Hometown’s relatively innovative and socially aware community, inequality manifested and was reinforced in talk about children’s food. Poppendieck’s proposal for universal school food may help to ameliorate child hunger and social tensions in such settings, not to mention in public school settings like those she observed elsewhere in the US, where the organization of lunch programs made for more obvious conflict and social harm.

Poppendieck offers Sweden’s school lunch program, funded for grades 1–9 since at least the 1940s, as further proof of the soundness of universal school lunch (see also Osowski et al., 2015: 556). Sweden’s social democratic system provides universal welfare support, with public services largely distributed equally across the population; by contrast with more liberal democratic systems such as that of the United States (where “a minimal state is accentuated and social policies are directed only at the poor”), in Sweden it is understood that the school is an institution that carries out some “social and health-related political activities” also associated with the family (Osowski et al., 2015: 556–557). When Poppendieck traveled to Sweden and observed a cafeteria lunch in session, she concluded that “the program had no taint of poverty … There was nothing for sale, so differences in purchasing power were not on display. No one was defined by whether or not they could afford to bypass the lunch, and as far as I could see, no one did” (Poppendieck, Reference Poppendieck2010: 264).

In the case of Rhode Island, where universal breakfast service ended up being so successful in its social impacts and its financial outcomes, initial opposition often was more philosophical than financial: critics asked whether ordering beds would be the next step after providing free breakfast, the implication being that the school system was being asked to fund what was properly the domain of the private home (Poppendieck, Reference Poppendieck2010: 245). Indeed, Poppendieck identifies Americans’ deeply held belief that paying for children’s food is a parental and not a societal responsibility as a key obstacle to innovation. To many Americans, inability to provide a child with adequate food is considered a failure, and further, it seems objectionable for taxpayers to pay for the food of affluent children (ibid.). Such attitudes are shaped by assumptions that tend to be prevalent in the United States concerning individual responsibility for personal health and well-being, and about consumerism as the primary path available for the exercise of agency and moral superiority – dynamics that have only intensified in the context of neoliberalism and the retrenchment of social welfare programs (Patico, Reference Patico2020: 8–13).

Change may be underway in the context of the COVID-19 pandemic, as we shall see, and a cross-cultural perspective helps to highlight that such norms indeed are historically and culturally specific and that there indeed are other ways to frame food responsibility (see Patico, Reference Patico2020: 104–108, 191–193). For example, Yuson Jung (Reference Jung, Klein and Watson2016) contrasts individualist thinking about private responsibility in food consumption with belief systems more popular in postsocialist Bulgaria, where citizens interact with capitalist markets against a longer-term background of familiarity with state socialism. In the state socialist economies of the USSR and Eastern Europe, not only were welfare supports provided relatively equitably by the government, but also the entire apparatus of production and distribution was organized by the state – albeit with variable effectiveness, as demonstrated by the well-known consumer shortages experienced in the socialist bloc – rather than by the mechanisms of a free market.

Given this experience, when faced with new questions about food quality in the postsocialist context, Bulgarian citizens were less likely to focus on the seemingly “intrinsic, superior” moral qualities of specific food commodities, as Americans might be more likely to do, but rather addressed concerns about “bad, fraudulent, or fake food” by asking pointed questions about governance and responsibility (Jung, Reference Jung2014: 52–53).

My aim here is not to argue that Bulgaria or other postsocialist states provide the best models for thinking about consumer satisfaction, but rather to point out that many consumers in strongly neoliberal settings conceptualize questions of responsibility, morality, and food safety quite differently from those with alternative experiences of state support and governance. In a state socialist context, for example, the notion of providing food for all children during the school day would seem entirely natural and accustomed. We will do well to take a broad range of experiences into account in order to reimagine the mechanisms that may serve communities and their goals best.

14.4 Working toward New Normativities for Children’s Food

Indeed, it is at the level of the reimagination of responsibilities that we must work to address more adequately contemporary anxieties about the safety, desirability, and accessibility of various foods – and to help ameliorate the social inequalities that inform and sometimes are exacerbated by these very debates. What would such a reimagination involve? Julie Guthman (Reference Guthman2007: 79) has quipped that Pollan’s individualized, consumer-choice model of food responsibility and its social politics are difficult to stomach and even “make me crave some corn-based Cheetos.” Likewise, at Hometown, I wondered whether “honoring the cheese puffs” – thinking about children’s food not just in terms of individualized consumer choices for individual bodies, but about the harmony of a larger social collective – might involve refocusing middle-class parents’ concerns away from their own children’s bodies and toward commensality and risk-sharing in broader communities … perhaps even by quite literally sharing more cheese puffs across households and social divisions (Patico, Reference Patico2020: 195). This is not quite a serious proposal, but in raising it, I really mean to ask: are moralized consumer judgment and individualized conceptions of food purity – the notion that to protect one’s own child’s body from suboptimal foods is paramount – serving any parents’ objectives (or their children’s health) particularly well?

Poppendieck suggests that we might reconceptualize school lunch and meet Americans’ skepticism about universal school meals by acknowledging that US society requires children to attend school each day. Since the school day falls during mealtimes and food is needed to sustain energy and attention for learning, food might simply be considered an integral part of the institution and the services it entails (2010: 266).  Such a reconceptualization indeed could be transformative, but a different set of circumstances has made universal meal provision more imaginable in the United States: during the COVID-19 pandemic, the federal government provided waivers to all public schools that allowed them to offer federally funded, universal free meals – including offsite or “grab and go” meals for students studying remotely – without verification of financial eligibility (Blad April 20, 2021). These waivers were extended through summer 2022, despite the fact that many US schools returned to in-person learning for the 2021–2022 school year. I learned from Hometown’s chef that the school provided universally free meals for both on-campus and remote students in 2020–2021, and that he welcomed the extension of the eligibility waivers into the next school year – as well as the prospect of a more permanent version of the policy.

The future is not yet clear, as President Biden has moved not to universalize school meals indefinitely but to expand the school lunch program by making it easier for elementary schools to qualify for universal meal funding (dropping the required threshold of students from households already enrolled in federal income-based support programs from 40 percent to 25 percent) (Blad June 1, 2021). Pushing further, Vermont Senator Bernie Sanders and Minnesota Senator Ilhan Omar  introduced the Universal School Meals Program Act of 2021, which would allow schools to offer free breakfast, lunch, and dinner to all students on a more permanent basis. Further, the bill moved to prohibit schools “from (1) physically segregating or otherwise discriminating against any child participating in the free breakfast program, or (2) overtly identifying a child participating in the program with a special token or announcement” (Congress.gov). Meanwhile, conservative legislators and groups such as the Heritage Foundation have criticized such plans, as Poppendieck might have predicted, on the premise that it is wasteful to extend meal support to less needy students (Blad June 1, 2021). As of March 31, 2022, the pandemic waivers were still set to expire on June 30 of that year. Funding to extend them had been excluded from a major Congressional spending bill passed earlier in the month; meanwhile, a new bipartisan bill hoped to extend the waivers through September 2023 (Ortiz, Reference Ortiz2022).

While permanent legislation such as Sanders’s and Omar’s could ameliorate social inequality and child hunger, it is important also to recognize that universal provision of food to children in school would not necessarily make children’s food equitable – even in the realm of school cafeteria food. The goal of such a program would need to be not only to put “healthy” (as defined by whom?) foods in the mouths of all schoolchildren, regardless of their socioeconomic status, but also to create a more inclusive and equitable, if not to say uniform, culture of children’s food in these shared, public institutional contexts. Universalizing school lunch may indeed increase the flow of resources into schools, put food into hungry children’s bellies, and reduce the stigma of separate free lunches for poorer children; but for more complex cultural and institutional reasons, consuming the same foods at lunchtime is unlikely on its own to eliminate concerns about classism or racism in school food, or in community discourse around food and social difference.

A Danish case study provides one example of how this can be true. Karrebaek illustrated how institutionally defined, normative definitions of “healthy” food can carry strong associations with nationhood and, concomitantly, can be exclusionary toward children whose families identify with other national or ethnic food traditions. In the Danish case (where universal school lunch is not in place and children bring packed lunches from home), minority families’ relative affinity for traditional Danish culture and their integration into mainstream Danish society is judged in part according to their consumption (or lack thereof) of rye bread, considered a normative Danish food (Karrebaek, Reference Karrebaek2012, Reference Karrebaek, Arnaut, Karrebaek, Spotti and Blommaert2016). Hence when teachers emphasize to their pupils the value of rye bread as a healthy food, they also, in effect, engage in practices of shaming and exclusion of children whose families do not share normative Danish foodways. One can easily imagine similar dynamics playing out across race, ethnicity, and national origin in the US (even if universal school lunch would reduce the possibility of home lunches being brought to school and criticized there), and such inequities certainly must be considered across class as well. As sociologist Annette Lareau and others have highlighted, middle-class and working-class adults often express similar ideas about parenting (and food), but their practices are shaped by divergent life conditions and resources, and middle-class kids benefit from the relative similarity of their home and institutional environments (Bourdieu, Reference Blad1992; Lareau, Reference Lareau2003: 236–238). Nutritional recommendations and policies are embedded and work within social structures and cultural belief systems, even when guided by science that aspires to be objective. In short, having a shared and free menu at school will not guarantee that all children and families are positioned equitably toward the foods served there.

Nor does it guarantee that institutional food suddenly will be deemed as appealing to children as shopping mall foods or homemade foods. In fact, in a recent Swedish study, researchers investigating contemporary adults’ memories of their own school lunches revealed that they thought of the meals as “second-class,” not only in terms of the food itself but also in terms of the environment in which it was served. While research participants did not oppose the idea of free public school meals, they tended to cast school lunches as inferior to home-cooked meals, which were associated with familial love and care. Students in Swedish schools had limited interaction with school lunch staff, which was hypothesized to negatively impact their views of the food itself (Osowski et al., 2015: 563–564; see also Nestle as cited in Poppendieck Reference Poppendieck2010: 274). Further, the researchers suggested that institutional food was seen by Swedes as “eaten out of necessity and … characterized by a lack of choice” (564). This reminds us that in many contemporary settings, ideals of personal consumer responsibility for food quality govern tastes and behavior in ways that contextualize and may constrain school lunch programs and other attempts at more collectivist and state-led solutions.

With all this in mind, how might we think creatively about ways to create shared, equitable access to what (some of us might deem reasonably) “healthier” food for children while also remaining aware of other, persistent and often implicit, practices that reinforce social inequality and could work paternalistically in institutional food programs to devalue some groups’ tastes in comparison to others’? How could we envision some new kind of success in reconfiguring and redistributing responsibility for children’s food? How can we find new ways to provide collectively for the well-being of children while being circumspect about forms of inequality that might flourish even, or perhaps especially, in contexts of “universal” provisioning?

Alexis Shotwell (Reference Shotwell2016) provides a useful concept in a distinct context. Shotwell explains that in queer and feminist theory, normativity is typically discussed as something to be resisted: a harmful kind of discipline and an exclusionary mechanism. Yet she notes that normativity also can be framed as an expression of something good and something to be pursued, in contrast to normalization, which entails the disciplining and shutting down of options. Shotwell thus uses the qualifier “open” to name “normativities that prioritize flourishing and tend toward proliferation, not merely replacing one norm with another” (2016: 155).

Spurred by this conceptualization, I ask: what might an open normativity for children’s food and for school lunch programs entail? It would need to promote certain notions of health, perhaps some loose consensus ideas about basic nutritional priorities, while also not shutting down a broad array of possibilities for how those basic needs could be met. It would be based on a commitment not only to provide equity of access to “good” food, but also to pursue some kind of equity of opportunity to define what constitutes good food, albeit in the context of shared provisioning and collective funding, and with reference to nutritional science as well as diverse, historically and locally produced tastes. Structurally disadvantaged groups, particularly lower-income households with fewer resources to invest in time-consuming provisioning or to searching out nutritional information, would need to have their food concerns, strategies, tastes, and discourses incorporated into the local visioning of such programs so that they could meet the socionutritional needs of a broad spectrum of children (see Reese and Garth, Reference Reese, Garth, Garth and Reese2020).

At Hometown, certain neoliberal understandings of individual and consumerist responsibility are influential and shape middle- and upper-class parents’ strategies, but they do not fully encompass nor do justice to the same subjects’ wishes for a more equitable society. Parents’ anxiety to provide optimal nutrition for their own children, while reasonable under the circumstances in which they find themselves, can also work to reinforce class privilege and division, inasmuch as they depend upon individualist consumer responsibility as the primary lens for approaching the well-being of children. Programs such as universal school breakfast or lunch, on their own, constitute no panacea for ensuring higher quality food for all children – nor for the more complicated task of ensuring that food quality is perceived and defined collaboratively and equitably across socioeconomic groups. Even so, such state-led measures may begin the work of increasing equity and, more broadly, of challenging neoliberal assumptions about where the responsibility for children’s food really lies. Though imperfect or limited on their own, they may present some of the best starting places for new conversations about what a public, civic culture of children’s food could or should be – by shifting the emphasis away from individual adults’ protection of their own children’s bodies and toward a different kind of thinking about food production, regulation, and institutional provisioning as things we do for a more collective, if far from uniform, body.

15.1 Introduction

Do you know someone age 65 or older? Well, they’re a problem. OK, let me explain: For starters, the rapid development of new medical advances along with improved standards of living over the past century means that humans are living longer than ever before. And, in many places around the world, the population subset of “elderly” people (typically defined as age 65 or over) will grow significantly in the coming years – e.g., in Europe, this group will increase “from 90.5 million at the start of 2019 to reach 129.8 million by 2050” (European Commission, 2020). Such a demographic trend – combined with decades of low birth rates across the European Union – means that population ageing is accelerating while population growth is slowing down. If this current trend continues unabated, it is expected to lead to significant changes in the structure of many societies: An increased number of adults age 65+ combined with persistent low fertility rates could lead to a marked reduction in the labor force and transform the age composition of the overall European population. This would consequently alter “the economy, social security and healthcare systems, the labor market, and many other spheres of our lives” (European Commission, 2014: 5; European Commission, 2018). Hmm – yeah, that might be a pretty big problem.

Another problem is that biomedical research has found evidence that people over age 50 have an increased risk of developing chronic diseases related to, for example, obesity, late-onset diabetes, and cardiovascular disease, which are among the most common and the most costly health problems facing older adults. But with access to improved medical treatment (including pharmaceuticals) and technologies, these conditions are no longer an immediate death sentence for most people in high-income Western countries. Instead, many people are simply living more years with several comorbidities; i.e., multiple chronic illnesses (Crimmins and Beltrán-Sánchez, Reference Crimmins and Beltrán-Sánchez2010). Due to the first problem of demographic change plus the second problem of increased longevity rates, which is entangled with a third problem of people living longer with costly chronic illnesses, population ageing has developed into a worldwide matter of concern – one that has been positioned as problematic since the issue of global ageing started to outpace more general worries about a “population bomb” that could destabilise financial and social institutions (Ehrlich, Reference Erlich1968; Johnson et al., Reference Johnson, Conrad and Thomson1989).

What this means, quite simply, is that the person you know who is age 65 or older is a market problem because providing years (perhaps decades) of care for someone who is sick, frail, disabled, and/or slowly dying is expensive. But please don’t jump on the panic bandwagon just yet. This neoliberal economic concern is exactly what I want to address in this chapter. In particular, I want to examine how a certain phenomenon (in this case, providing care to a rapidly growing number of older people) has been positioned as a problem – and as a threat that is potentially devastating not only to economies but also to the basic structures of Western society. And then I’d like to consider how we might address this “problem” through other solutions. Of course, the way in which government officials and health experts provide older people with supportive services and determine what kind of care they might need can vary widely in different settings around the world – and can produce varying results. But in order to illuminate how we should (and should not) care for the elderly, I take a closer look at one particular European welfare society.

In many neoliberal systems, a political economy of healthcare services has developed over the past few decades, which frames the individual citizen (or patient) as a “freely choosing” consumer (Højlund, Reference Højlund2006: 43); this also means that community health workers have become positioned as sellers/providers of care services that should meet the consumer’s demand. In this bureaucratic configuration, both municipal health professionals and citizens are expected to act as rational individuals who should work together to make the “correct” cost–benefit choices. And, as this chapter demonstrates, some older people consider any municipal offer to be yet another service option, wherein they as consumers can freely choose what they prefer.

In what follows, I’ll illustrate two moments of care within the same, neoliberal Danish eldercare system. In the first moment, the state’s investment of resources produces an outcome that benefits the state; while in the second, the investment benefits the person. Despite both moments of care happening within the same system, we can see in their contrast: (1) the bureaucratic limitations of a neoliberal welfare state as the process of rationing care and pushing for a specific type of citizen outcome unfolds; and (2) the potential advantages of putting people before markets when the unpredictability of direct, human-to-human care is allowed to happen. As I discuss, understanding each of these moments has larger societal implications – which is important for all of us to consider as we age and have an increased need for support from healthcare professionals and our local communities. So, without further ado, let’s go to Denmark …

15.2 Visitation: The Case of Sanne and Dyveke

The municipal health professionals who broker the “free choices” in relation to the government’s Free Choice scheme are the authoritative visitation staff. This specially trained group of health professionals conducts in-home evaluations of the living conditions and functional needs of any citizen who wants to receive personal care or practical help from their local municipality. The visitator’s primary function is to uphold laws and policies on behalf of the state, particularly the Social Services Act (Lov om Social Service). This national law (Ministry of Children, Equality, Integration, and Social Affairs, 2014) governs the provision of services related to personal assistance and care, assistance, or support for practical tasks at home, and meal delivery – and the visitator alone has the power to make official, formal decisions (afgørelser) with regard to which care and supportive welfare services a citizen is eligible to receive. In other words, the visitator is the only professional who can refer a citizen to other municipal care and service providers. In fact, with the establishment of visitation as part of the municipal authorities in the 1990s, the political intention was specifically “to shift the assessment of older people’s needs away from the care professions and put it into an administrative context with a broader overview. [This was done partly] to better manage the economy, and partly to ensure that the elderly received consistent help” (Lønstrup, Reference Lønstrup2008: n.p.).

During the 2000s and 2010s, many municipal health and welfare programmes continued to emphasize “free choice” and the citizen’s individual responsibility to be more self-sufficient and not dependent on welfare services. Thus, the visitator’s job became sedimented as a “management tool” that was used to regulate expenditures and control capacity, specifically with regards to “the municipality’s decision on the allocation of specific offers and services to the individual citizen” (Ministry of Finance, 2003: 47). As part of the education to become a visitator, one is expected to be able to “analyse, critically evaluate, and manage transitions between functions, departments, and sectors to ensure consistency in healthcare services; this may involve both an interdisciplinary and an organizational perspective in the analysis of actual collaborative challenges” (University College UC Syddanmark, 2014). In general, the role of the visitator is to follow and enforce laws, policies, and rules; to offer citizens choices and opportunities; and to mobilize the appropriate actors within the framework set forth by national and local policymakers. Specifically, visitators are meant to manage the problems that “the client cannot solve, and only the professional can solve” (Goode, Reference Goode1957: 196), and their work with citizens is regulated and controlled by national legislation, standards, and local policies that emphasize cost-savings and efficiency.

In practice, the work of visitation is activated by an individual citizen who needs assistance – i.e., a person who has been experiencing more difficulty in their everyday life, or who has undergone a sudden change in their health or social condition due to an illness or injury. After receiving a formal request from a citizen, the citizen’s general practitioner (GP), or a close relative, the visitator is then deployed as a “risk assessor,” traveling to the citizen’s home to assess the “damage” that prevents the citizen from being fully self-sufficient; the visitator must then determine what can be done to solve the problem. When a visitator decides that a citizen requires supportive services, that individual is offered two choices under the Free Choice scheme: either municipal services (which are no-cost or subsidized) or private help (paid by the citizen) – and this private help must meet the same level of service quality that the municipality offers (Højlund, Reference Højlund2006). The visitator’s main responsibility is then to coordinate services between specific professional departments and the citizen, and to uphold laws on behalf of the state – particularly anything related to the Social Services Act. But before any services can be offered, the visitator must first assess the citizen’s living conditions (i.e., their home) and physical functionality (i.e., their body).

By way of example, I followed the visitator Sanne to reevaluate Dyveke (age 86), a widow who lives alone; according to the notes in her online medical journal, Dyveke was diagnosed with leukaemia twenty years ago, but has been in remission for many years. More recently, however, she had been diagnosed with depression and is having trouble managing daily tasks around her home. Dyveke had been evaluated by another visitator several months ago, who recommended that she start a programme of “everyday rehabilitation” (i.e., reablement) with the municipality’s new cross-disciplinary training team. However, it appeared that Dyveke had not followed through with this after the first session; instead, she contacted visitation again to once more request help with housekeeping. In my field notes I wrote:

In this example, both Sanne and the training team (indirectly) consider Dyveke to be very “mobile” (i.e., active and functionally able) and thus physically capable of vacuuming her own apartment; as a result, Sanne determined that Dyveke was not eligible to receive help from the municipality, even though Dyveke was feeling exceedingly tired and depressed due to her various illnesses. When Sanne wrote her decision letter after the visit, she noted that Dyveke was able to set daily goals for herself – she walked regularly with her Nordic walking sticks, went out to buy groceries for herself, visited her sons’ families, etc. – thus, Sanne concluded that Dyveke’s functional ability was “not restricted.” In other words, she believed that Dyveke’s body, in the temporal framework of the evaluation, was mobile and capable enough to do the vacuuming herself. Sanne also made a special note in Dyveke’s online medical journal: “The citizen can vacuum but chooses to do the whole apartment at once, rather than breaking it up (as recommended).” Even though Dyveke reported that she felt “heavier than usual” and “very low,” Sanne did not address Dyveke’s psychological or emotional state during the evaluation. To overcome feeling “low,” Sanne instead suggested that Dyveke should join local exercise classes and take more walks outside – and that she should even think of vacuuming as exercise – because she is “not restricted” and thus able to do so.

This case demonstrates that, in contrast to the “golden days” of the Danish welfare state – wherein the provision of care and supportive services was guaranteed and framed as a universal right of citizenship – a neoliberal public sector means that older people can no longer expect to automatically receive long-term support and assistance from their local municipality, despite having contributed to the welfare system for their entire lives. This is because most welfare services in Denmark have been constructed as a commodity that the citizen can choose; specifically, since the early 2000s, help “no longer takes its starting point in everyday life, but instead in meticulous administrative programmes” (Højlund, Reference Højlund2006: 47). The visitators in particular must act as the Free Choice scheme’s “management tools,” which means that these professionals have lost the universal responsibility to ensure that supportive care is available to all who need it (Fine, Reference Fine2007: 4). Instead, the Danish state’s neoliberal policies, laws, and regulations have defined the terms for which services the visitators are able to offer – and which services the citizen may actually choose – and this market is controlled and regulated by the municipal leadership with regard to both service providers and quality standards.

When it comes to older people in particular, the Danish state’s goal is for them to retain and maintain a high quality of life with less need for (expensive) supportive services and hospitalization for as long as possible. Thus, the neoliberal perspective is that the visitator’s main function as a “management tool” is to offer the individual citizen an opportunity to freely make the “correct” choices (Pedersen and Andersen, Reference Pedersen and Andersen2016: 37) – rational choices that should allow them to master their lives and take more responsibility for their own health and welfare, continuing to live productive, not-dependent lives until they die at a ripe old age. In this way, neoliberalism and its inherent market imperialism have moved beyond a certain political agenda – i.e., to support “healthy ageing” and to enable self-help – and have instead become “tacitly identified simply with the art of governing people” (Chapter 2, this volume).

However, as this case suggests, a neoliberal drive for self-sufficiency and not-dependence in order to create a healthy elderly population may be counter-productive if it ends up exhausting and over-exerting older individuals. From Dyveke’s perspective as a freely choosing consumer, Sanne’s suggestion to join local exercise classes and to take more walks outside was not an effective solution to her problem. Dyveke was able to walk outside because it gave her energy and lifted her “very low” mood. But she found it difficult to manage the household chore of vacuuming, and she did not consider it to be an enjoyable form of exercise. The only realistic choice Sanne provided to her, then, was to work with the training team (or hire private cleaning services). This resulted in a negotiation of power between Sanne and Dyveke – wherein “individuals try to conduct, to determine the behaviour of others” (Foucault, Reference Foucault1987: 18) – as Dyveke debated the first visitator’s decision to send the training team and then pointed out to Sanne that she “feels it in [her] back” when she does try to vacuum. Such a negotiation also suggests that Dyveke had an expectation to receive the services to which she believed she was entitled – and that she as a “freely choosing” consumer wanted to receive. As such, this empirical example highlights how the neoliberal citizen-consumer feels they have the freedom to question and choose – and even reject – the services and opportunities they are being offered by the municipal authority (i.e., the visitator).

Like Dyveke, many older people question and resist the biopolitical forces that attempt to make them into a “good,” docile subject of the state (Foucault, Reference Foucault1979). But, at the political level, it can be problematic if an older citizen decides to not participate in the health-promoting/-preserving activities and opportunities that the visitator suggests – the main consequence being that they will be left to fend for themselves, eventually reaching a point of decline where they must receive municipal services, be institutionalized (e.g., enter a long-term care facility), or be hospitalized; all of which would have a negative economic impact on the state. Thus, as the discursive move from providing help to enabling self-help becomes more embedded in municipal eldercare, the visitators are increasingly having to assess the older person’s body in terms of its potential to retain its functionality and remain not dependent for as long as possible. As another visitator, Brynja, explained to me, “[When] the municipality gets the first referral from a citizen regarding assistive devices or something – you already begin to think, ‘Could there be a need for physical activity or training that could maintain or prevent a decrease in function?’” (interview; February 25, 2016).

And this is where the training team comes in. As I mentioned earlier, when a visitator determines that an older citizen needs “helping services,” they have traditionally been presented with two choices: either no-cost/subsidized municipal services or citizen-paid private help. But with the Danish state’s need to manage its looming “elder burden” and to reduce municipal eldercare costs, older people who ask for help are now being given a third choice: a programme of “everyday rehabilitation” (i.e., reablement) services. During the time I spent following the visitators on home visits, I noticed that they were frequently beginning to refer older citizens to the municipality’s new cross-disciplinary training team. This is because, in January 2015, the national government activated §83-A of the Social Services Act; this addendum states all Danish municipalities must offer a short, time-limited reablement programme to any citizen who has been evaluated as having decreased functional abilities but who could benefit from supportive training at home. Brynja told me that she considered the reablement offer to be another “opportunity” for the citizen “to manage as many things as possible at home for the longest possible time” (ibid.). But, as I suggested earlier, the training team’s approach to caring for older people – and the outcome of this form of “help to self-help” – is quite different.

15.3 Reablement: The Case of Sofie and Norah

The concept of “restorative care” emerged in the late 1990s when practitioners in the United States developed a new model for restorative care versus the “usual care” for older adults who were receiving an acute episode of home care (Tinetti et al., Reference Tinetti, Baker, Gallo, Nanda, Charpentier and O”Leary2002). In their evaluation, the researchers suggest that “a primary goal of health care for older, particularly multiply and chronically ill, persons should be to optimize function and comfort rather than solely to treat individual diseases” (ibid.: 2098). This innovative model was based on principles adapted from geriatric medicine, nursing, rehabilitation, and goal attainment, which refers to the belief that people “are more likely to adhere to treatment plans if they are involved in setting goals and in determining the process for meeting these goals” (ibid.: 2100). This foundational model transitioned to being called “reablement” in the late-2000s as interventions with similar service models became more widely implemented in Western countries around the world. These interventions were most often called reablement or re-ablement (United Kingdom) or the active service model or restorative home support (Australia, New Zealand, and USA). In Scandinavia, the Swedish version is known as hemrehabilitering (home rehabilitation), while the term hverdagsrehabilitering (everyday rehabilitation) is used in both Norway and Denmark.

In Scandinavia, reablement programmes started to be offered in the 2000s; the first was piloted in Sweden’s Östersund Municipality in 1999, and positive evaluations of the so-called Östersund model inspired local governments throughout the Nordic region to implement similar programmes. The pilot programme “As long as possible in one’s own life” (Længst muligt i eget liv) was the first in Denmark; it was launched in Fredericia Municipality in 2008. This initiative aimed to focus on the rehabilitative efforts of in-home eldercare and to strengthen older citizens’ ability to “master their own lives” (Kjellberg et al., Reference Kjellberg, Ibsen and Kjellberg2011; Blom Reference Blom, Pedersen and Petersen2014: 45). Based on positive evaluations of the Fredericia model – and a savings of 15 million Danish kroner (over 2 million Euro) in the programme’s first year (Kjellberg et al., Reference Kjellberg, Ibsen and Kjellberg2011) – the Danish government decided to activate §83-A of the Social Services Act in 2015.

Although reablement programmes worldwide have had different characteristics, components, aims, and target groups over the years (Clotworthy et al., Reference Clotworthy, Kusumastuti and Westendorp2021), experts attending the International Federation on Ageing (IFA) Global Think Tank and Copenhagen Summit 2015/2016 defined reablement as “an active process of (re)gaining skills and confidence in maintaining or improving function, or adapting to the consequences of declining function. It also supports the individual to remain socially engaged within the community context in a safe, culturally sensitive and adaptable way” (Mishra and Barratt, Reference Mishra and Barratt2016: 7). More recently, an international Delphi study defined “reablement” in part as “a person-centred, holistic approach that aims to enhance an individual’ s physical and/or other functioning, to increase or maintain their independence in meaningful activities of daily living at their place of residence, and to reduce their need for long-term services” (Metzelthin et al., Reference Metzelthin, Rostgaard, Parsons and Burton2020: 11). In many Western countries, reablement services are offered to anyone who may benefit from this form of time-limited support, regardless of age.

Just prior to the national enactment of §83-A in 2015, Tøftsby established a cross-disciplinary training team consisting of occupational therapists, physical therapists, and SOSU assistants. In general, the aim was for this professional group to improve older citizens’ functional ability, prevent hospital admissions, and reduce (or at least maintain) their need for municipal help. The reablement offer is specialized training that aims to reskill a citizen’s functional ability related to ADLs, which will thereby enable them to remain self-sufficient within their own homes for as long as possible. Part of the text inside the municipality’s promotional pamphlet says, “For [Tøftsby], it is valuable that you have a long and active life with a high quality of life. (…) We see [reablement] as an investment in you. If you become more active, you will preserve and increase your resources, so you can master your life as long as possible and avoid being dependent on others” (municipal pamphlet).

I followed the physical therapist Sofie through a reablement programme with Norah (age 79), a widow who lives by herself in a small apartment. To prepare for their first meeting, Sofie learned that Norah had been in the municipal system since 2009, when she suffered a stroke. In addition, she fell and severely broke her leg in 2001, which has caused her problems ever since; she also has partial sight in her left eye (caused by a work accident) as well as osteoporosis. She had recently been hospitalized for several days – according to the notes in Norah’s online journal, it was because she had had another small stroke (“admitted after a blackout at home – blood clot in the cerebellum”). After a visitator evaluated her situation, the official referral said that Norah chose to participate in reablement so that she could “regain her former skills” and be “freely mobile and self-reliant” again, and it recommended that she receive “training in everyday activities in the home and on the street/stairs” (field notes; October 26, 2015).

During the initial assessment, Sofie asked if Norah had any particular wishes for the training sessions; Sofie emphasized that she takes her point of departure in Norah’s everyday life and what she specifically wants to accomplish. Norah said that, primarily, she would like to be better at walking: “My greatest wish is to be more confident” (ibid.). Sofie and Norah therefore agreed that a training goal would be to walk down to Drikkelund (a pseudonym) – this is a municipal facility located less than one kilometre from Norah’s apartment, and where she had previously attended exercise classes twice a week. Since her latest hospitalization, Norah said she was not “back on my feet yet” (ibid.), and she generally struggled with balance due to her poor eyesight and damaged leg, so they also agreed to train with Norah’s new outdoors rollator. When we arrived for a subsequent training session, Norah was looking out of her first-floor kitchen window, waiting for us to arrive. I wrote in my field notes:

In this example, Norah assumed the identity of a “freely choosing elderly” consumer (Højlund, Reference Højlund2006); i.e., she wanted to choose from among the options presented to her, and then to decide exactly when and how to participate in the reablement training. And, in alignment with the neoliberal political discourse about the citizen’s “free choice,” Sofie acknowledged Norah’s ability to make these choices and decisions for herself – and they walked to the corner store, not to Drikkelund as they had originally planned. However, this case doesn’t simply reflect a last-minute change of plans based on Norah’s whims and demands – umm, I mean, her choices – or Sofie’s need to be flexible as a provider of supportive services. Such changes are actually quite typical: reablement training takes its point of departure in whatever type of activity the citizen decides is important to them – e.g., going up and down stairs or bathing, lifting a laundry basket or vacuuming floors, putting on support stockings, cooking food, etc. – and the therapists then emplot (Mattingly, Reference Mattingly1994) the training programme to build these specific actions.

In Norah’s case, it was the act of walking outside that was more important than the actual destination. Moreover, any kind of physical rehabilitation is a process that must be continually adjusted and modified based on the person’s physical, emotional, and ontological limitations, which are always in flux (ibid.). But a central feature of reablement programmes is also that they frame the older person as “an expert in their own life” (Aspinal et al., Reference Aspinal, Glasby, Rostgaard, Tuntland and Westendorp2016: 2). Based on the older person’s individual values, needs, and priorities, the therapists should then focus on guiding them toward discovering resources and determining activities that are meaningful to them. In many countries, the reablement offer is also framed as a partnership; in Tøftsby, the programme is described as “a health-orientated effort to maintain the citizen’s functional abilities in a partnership between the citizen and [the team member] (…), where the focus is on the citizen’s everyday life and resources” (municipal pamphlet).

This focus on the older person’s goals, limitations, and priorities makes a difference. Specifically, it requires the reablement therapists to acknowledge a vast array of emotional and psychological factors that are necessary for the training to be “successful”; i.e., for the older citizen to attain the personal goals they choose. In an interview, Sofie described her approach:

In this quote, Sofie explained how she tries to relate to the older citizen on a personal level, not merely on an abstract individual level. Specifically, she emphasized that she needs to determine whether or not training certain ADLs could be meaningful and valuable to that particular person. To achieve this with Norah, it was essential that Norah express her “true” self – both positive and negative – so that Sofie could personalize the training programme for her. By acknowledging Norah as a complex person, Sofie was able to locate and transform Norah’s willingness to act in relation to the goals that Norah articulated for herself. This meant that Sofie could make the training meaningful for Norah by basing it on her everyday life and the future-orientated activities that she wanted to accomplish (i.e., being “better at walking,” going to Drikkelund, being more self-reliant). In this way, reablement programmes offer a somewhat subversive internal contrast to the larger neoliberal goals of the Danish competition state, wherein municipal health professionals (like the visitators) are simply expected to find ways for citizens to remain self-helping for as long as possible.

Fundamentally, reablement therapists do much more than simply work with an older person’s corporeal body, training them to maintain their functional ability in order to remain not dependent on welfare services. As I mentioned, reablement programmes are based on a partnership between the therapist and the older person – this partnership requires a form of “shared decision-making” wherein both parties make an investment in the outcome; the citizen because their health is at stake, and the professional because they are concerned for the citizen’s welfare (Charles et al., Reference Charles, Gafni and Whelan1999: 656). This means that, during the training sessions, both the therapist and the older citizen exchange a social acknowledgment (Liveng, Reference Liveng2011), which confirms their identities as professionals and persons. In a long-term perspective, this form of recognition may ultimately lead to an improved quality of life for both parties. But, in the context of reablement, such mutual recognition also generates a form of care. As a concept, “care” is a slippery term that can be defined in many different ways; the meaning of “care” is subjective, always contextual, and thereby nonessentialist (Tronto, Reference Tronto2017: 29, 33). I understand it as a way that others may help us “to maintain, continue, and repair our ‘world’ so that we can live in it as well as possible” (Fisher and Tronto, Reference Fisher, Tronto, Abel and Nelson1990: 40). As this case suggests, an important component of reablement is that the therapists engage in caring action (cf. Åström et al., Reference Åström, Norberg, Hallberg and Jansson.1993); in my conceptualization, this refers to the decisions that the therapists make that reflect their concern for the older person’s welfare, and which consequently help the older person make choices that will “repair” their world.

In an interview after her reablement programme was over, Norah told me: “[Sofie] directed me just so I could get started. That’s what she directed me in – just to get started. (…) What she showed me was common-sense. And she showed me that I could do more than I thought I could” (interview; December 15, 2015). Norah’s assessment points to a simple yet significant result of the reablement training: By directing her just so she “could get started” in a “common-sense” way, Sofie ultimately helped Norah to remain an active and valuable member of the social collective. Thus, the outcome of this form of eldercare is profound and far-reaching. In particular, health programmes like reablement are grounded in a need for social acknowledgment and care – not just of the welfare recipient, but also care for and about others in their shared social environment. The form of social recognition and interaction that occurs during reablement training may also produce a form of “relational citizenship” (Pols, Reference Pols2016: 177); i.e., by creating particular relationships and social spaces together, people become constituted as citizens through their interactions.

15.4 Conclusion

In 2015, then Danish Prime Minister Lars Løkke Rasmussen described the Nordic model as “an expanded welfare state which provides a high level of security to its citizens, but it is also a successful market economy with much freedom [sic] to pursue your dreams and live your life as you wish” (Yglesias, Reference Yglesias2015). This description echoes a central tenet of liberalism: i.e., “there is a fundamental value in the freedom of individuals to choose their own trajectory through life” (Chapter 2 this volume). Having the freedom to make such life choices is considered significant to cultivating well-being in the Nordic states (Martela et al., Reference Martela, Greve, Rothstein and Saari2020). But, as I’ve suggested elsewhere (Clotworthy, Reference Clotworthy and Sokolovsky2020), “freedom” is conceptualized differently in Denmark. The Danish form of freedom of choice – “to pursue your dreams and live your life as you wish,” as former Prime Minister Rasmussen said – contains a number of reciprocal exchanges and obligations between the citizen and the state. Such exchanges are seen as necessary because they are fundamental to preserving Denmark’s wealth and thereby its status as an “exceptional” Nordic welfare society. In this type of market-based system, “individuals exert their ‘free choice’ but are at the same time guided by those who designed the incentives to induce more or less of a certain behavior” (Larsen, Reference Larsen2015; Larsen and Stone, Reference Larsen and Stone2015: 5).

This can be seen in the first case with the authoritative visitator – a job function that was specifically defined and sedimented during the rise of neoliberalism in the 1990s. This municipal health professional’s epistemology and approach reflects one of the hallmarks of capitalist forms of production; e.g., they are often “near-sighted,” focusing on short-term profit first and long-term outcome/impact second. By expecting and encouraging older people to make certain choices – i.e., to “take over,” to “take responsibility … as long as they can,” and to not “get worse and worse,” in the words of the visitators I followed – the neoliberal approach to elderly citizens implies that they are inherently passive, incomplete, and not doing enough. As such, this logic of choice (Mol, Reference Mol2008) frames self-care and individual responsibility not only as a moral obligation to benefit the state, but also assigns blame to citizens who may make the “wrong” choices and fail to “properly” manage themselves in accordance with the municipal guidelines (Otto, Reference Otto2013). Ultimately, a political and economic emphasis on older people achieving better physical functionality so they can continue to take care of themselves for as long as possible may work to marginalize those who cannot achieve the neoliberal goals. Some just can’t – and this should not be seen as a personal failure.

In the second case, the political framework for the reablement programme also contains neoliberalist terms and expectations for what the training team as a professional group should be able to achieve; i.e., their work is meant to contribute to the national and municipal ambition to reduce costs in the public sector, enhance citizens’ productivity, and improve longevity rates. In other words, reablement training in Denmark has been implemented to address the market problem of providing supportive welfare services to an increasing – and increasingly dependent – elderly population. However (however!) in contrast to the authoritative and bureaucratic evaluations conducted by the visitators, reablement programmes are specifically allowed to focus on meaningful goals and activities in order to achieve each older person’s “hopes and dreams” for the future (Guldager, Reference Guldager2011). In fact, the interpersonal work of reablement requires the training team therapists to acknowledge the heterogeneity and “messy subjectivity” of an older person; my conceptualization of this term refers to the complexity of the human agent as a person (Clotworthy, Reference Clotworthy2017: 29). This means that, in order to achieve a “successful” outcome, the therapists must consider not only a person’s “needy” body and limited abilities but also their unique identity and history of lived experience; their intrinsic motivations, personal hopes, dreams, values, and priorities – and especially their irrationalities, paradoxes, and contradictions. In other words, their agency and essential personhood.

As I’ve suggested in this chapter, a neoliberal emphasis on self-governance, wherein a citizen is obligated to take individual responsibility for their own care in order to benefit society (Halse, Reference Halse, Wright and Harwood2009: 51; Mik-Meyer, Reference Mik-Meyer2014) – combined with a focus on retaining the functionality of a citizen’s physical body as a resource to benefit the state – becomes strongly tied to morality (Taussig et al., Reference Taussig, Høyer and Helmreich2013: S6). This means that, instead of being dependent on others for help, the individual citizen is strongly encouraged to make the choices that the “experts” want them to make; specifically, to take control of their own health (Powers, Reference Powers2003: 232), to help themselves, and to remain not dependent. But, I would argue that – “by leaving aside the issue of emotion and preferring that of rational maximization” (Ballet et al., Reference Ballet, Petit and Pouchain2018: 189) – neoliberalism and mainstream economics have missed the point with regards to caring for the elderly. If we consider the work of moral philosophers like Adam Smith (Reference Smith1759), economic behavior has long been entangled with emotional self-interest – but it has also reflected a concern for the welfare of others; in this way, “the excesses of an unregulated market can be curbed by an appeal to our moral sentiments” (ibid. in Terjesen, Reference Terjesen, Hamington and Sander-Staudt2011: 70).

So, if we think about what it means to be moral and to live well together in a society, then perhaps we should stop monetizing the individual citizen’s ability to remain productive and independent. If a citizen is only valued for their individual productivity – i.e., their ability to work and contribute to society as a consumer – then they may lose a sense of their identity as a social being, and may ultimately feel oppressed and experience a lack of personal freedom. And, if we remove the neoliberal drive to capitalize on the capacities and abilities that certain individuals (e.g., elderly people) can contribute to the state and society-at-large, then perhaps we can begin to establish “institutions and social arrangements that not only respect rights, but also provide for meeting adequately the care needs of all citizens” (Lanoix, Reference Lanoix2020).

One initiative that seems to be “doing it right” is a Dutch home-care provider called Buurtzorg (“neighborhood care”). First developed in 2006, this nurse-led form of holistic care has revolutionized community care in the Netherlands and is now expanding into many other countries worldwide (it is currently being piloted in Denmark). The Buurtzorg model is grounded in “the client perspective and then works outward to assemble solutions that bring independence and improved quality of life” (Buurtzorg, 2021); in particular, this direct-care approach focuses on the client’s “living environment, the people around the client, a partner or relative at home, and on into the client’s informal network; their friends, family, neighbors and clubs as well as professionals already known to the client in their formal network” (ibid.). A key element of the model is that employees must have “a sustained focus on the opportunities (in care as well as the local community) that exist to support the citizen’s autonomy and self-help” (Gray et al., Reference Gray, Sarnak and Burgers2015); as such, the Buurtzorg approach is meant to provide the greatest possible continuity in care as well a starting point for an ongoing and holistic approach to the citizen’s need for help (Buch, Reference Buch2020: 20).

Although experiences in other countries have raised questions regarding “the applicability and relevance of the model within different cultural contexts and the potential of the model to produce both local and global impact” (Kreitzer et al., Reference Kreitzer, Monsen, Nandram and de Blok2015: 44), the significance of the Buurtzorg concept may ultimately lie “not just in the wholesale spread of this model but in the recognition of the value of its key components” (Gray et al., Reference Gray, Sarnak and Burgers2015). Specifically, founder Jos de Blok said, Buurtzorg is “a company that is driven by a belief in ‘humanity over bureaucracy,’ and that belief deeply impacts the patients and those who care for them” (Kreitzer et al., Reference Kreitzer, Monsen, Nandram and de Blok2015: 40). As the title of this book suggests, putting markets before people can be problematic. So, similar to the Buurtzorg model, the two cases I’ve presented here demonstrate that most industrialized Western societies would benefit from developing solutions and reinforcing discourses that promote older people’s social value as essential, productive, and still-contributing members of society. That means that government officials and health experts should focus less on trying to improve older people’s functional ability in order to train these individuals to be “free” from the need for health and welfare services, and should instead put more effort into building stronger, more inclusive communities of care. Because each of us has social value – not just as a productive consumer, but as a complex person.

Such an approach is likely the best way to care for all people, not just the elderly.

16.1 Sirens: The Sound of War

The sirens are loud and frequent in Brooklyn, downtown San Francisco, and just north of the University of Chicago campus. The BWEEP bip bip BWEEP of police cars speeding through traffic or the Eee-Aww-Eee-Awws of ambulances rushing to locate an overdosing person might very well be related to drugs; US law enforcement and emergency medical services are very often called out to overdoses, shootings, and drug-related crimes these days. The sirens are the most audible and most obvious incarnation of the ongoing “war on drugs” launched by President Nixon in the United States over fifty years ago at his press conference speech on June 18, 1971 (Vulliamy, Reference Vulliamy2011). Drugs of all kinds – in general substances which physically and psychologically alter the body and mind – have been defined as legal or illegal in different places at different times; condemned here, celebrated there (Goodman, Lovejoy, and Sherratt, 1995; Singer, 2012). But how are the people that consume them treated?

In the 1970s, drug use and its prosecution under the guise of the war on drugs was mostly confined to include illegal substances such as heroin, cocaine and crack, and prescription medication (e.g., Oxycontin). New substances such as fentanyl have since extended the repertoire of people who use drugs. By casting drug use as the “public enemy number one,” the American war on drugs solidified the illegality of drugs, and by direct extension, the criminalization of people who use drugs. Under the 1973 Rockefeller laws, for instance, people can be sentenced to prison for a minimum of fifteen years for possession of small amounts of heroin; similar convictions are still in place for marijuana and crack/cocaine in many states. For the last fifty years, poor communities, mostly of color, have borne the brunt of this criminalized approach in the US – legacies of which have lasted well into the twenty-first century (Hansen and Netherland, 2016; Hart, 2017).

Currently, almost one in six arrests in the US is directly related to drugs with around 85 percent related to possession (Real Reporting Foundation). This results in 47 percent of all inmates in federal prisons being incarcerated for drug-related offenses, versus 5 percent for burglary and just over 10 percent for weapons according to 2018 data (Flores et al., Reference Flores, Lopez, Pemble-Flood, Riegel and Segura2018). On the other hand, over 1.1 million of emergency department visits were generally due to drug-related incidents, according to data collected between 2008 and 2011 (Albert, McCaig, and Uddin, Reference Albert, McCaig and Uddin.2015). Overdose-related visits have gone up dramatically in recent years, increasing the absolute number further – by over 100 percent in Wisconsin and 66 percent in Illinois (Centers for Disease Control and Prevention, 2018). The number of overdose-related deaths has surged during the last decade and over the course of the COVID-19 pandemic. In May 2020, the CDC registered 81.230 drug overdose deaths in the US in the past year, the highest annual rate ever recorded (Centers for Disease Control and Prevention, 2020). Partly, this development is driven by the arrival of new highly potent substances such as fentanyl and its derivatives, but many of these deaths, incarcerations, and the never-ending sirens of ambulances have been a result of the ongoing war on drugs.

The criminalized treatment of people who use drugs is not without its alternatives. While many countries – from the UK to the Philippines – still have an approach that is loosely based on law enforcement and an understanding of people who use drugs as “deviants,” other countries have completely changed their policies. Portugal and Denmark have followed early adopters such as the Netherlands or Vancouver, Canada, and Geneva, Switzerland, in their focus on harm reduction (EMCDDA, 2018). Harm reduction is an approach that acknowledges the inevitable presence of drugs and substances in society. Instead of criminalizing users of drugs, it aims to “reduce adverse health, social and economic consequences of the use of legal and illegal psychoactive drugs without necessarily reducing drug consumption” and recognizes that abstinence is often unrealistic or undesirable (International Harm Reduction Association, 2010). What has kept countries such as the US “stuck” in the war of drugs modus for the last fifty years? How have policies changed and where are we now?

Methadone maintenance treatment came to be the predominant detoxification treatment in the United States starting in the 1970s, particularly in New York City, and the regulatory framework for methadone maintenance was established from 1970 to 1975 (Institute of Medicine, 1995). The approach was pushed by policymakers, drug companies, and doctors as medical treatment for addiction and aimed to wean people who use drugs off of heroin by replacing it with another pharmaceutical with similar (biomedical) effects: methadone. There have been a number of reported benefits of methadone such as the lower risk of death or infection, as well as, for some patients, the sense that they are moving along their recovery journey. Many people, especially communities of color facing the most amount of criminalization that was ongoing with methadone maintenance, pushed back strongly against it. For example, in the South Bronx, the Young Lords and the Black Panther Party – two revolutionary parties which advocated for the self-determination of poor and oppressed peoples – took radical action to protest against systemic medical neglect, discrimination, and healthcare failure to address the heroin epidemic. They took over a local medical facility, the Lincoln Hospital, and implemented their own Lincoln Detox clinic. Methadone was quickly abandoned there even as a treatment option and instead replaced with acupuncture (Melendez, Reference Melendez2003; Reverby, Reference Reverby2020; Meng, Reference Meng2021). Methadone was seen as the replacement of one drug with another and patients were weary of the dangers of methadone, from “brainwave changes” to “crib deaths” (White Lightning, 1974). Patients distrusted highly regulated pills that “white doctors, in white coats, in white hospitals” prescribed. Similar to the war on drugs, methadone was seen by one Lincoln Detox organizer as an attack on the Black community, by means of “chemical warfare,” a government-manufactured way of “controlling the community.” He recalls in an interview:

In contrast, another part of the world was beginning to experiment with a different approach to drugs in the 1970s. In the Netherlands, the first legally staffed safe injection sites (SIS) were being established; in addition to offering a space for people to use drugs, they also offered a needle exchange program as well as provided for basic healthcare, food, and laundry services. Since then, a number of countries have established SISs, including Switzerland, Denmark, France, and Portugal (EMCDDA, 2018), but no legal site has been sanctioned in the United States or in the United Kingdom. While much evidence points toward SIS’s lowering fatal overdoses as well as more general healthcare costs (Boyd, Reference Boyd2013; Kinnard et al., Reference Kinnard, Howe, Kerr, Hass and Marshall2014; Bowers, Reference Bowers2019; Kral et al., Reference Kral, Lambdin, Wenger and Davidson2020), there still remains little consensus on whether or not to pursue SISs for a number of reasons, not least of which is stigma. In this chapter, we are contrasting methadone maintenance with safe injection facilities along a number of dimensions and parameters.

Overall, we are contrasting two different models of how drugs are regulated and treated through these concrete examples; on the one hand people who use drugs are treated as deviants who need to be punished, controlled, disciplined, and regulated. In this model – exemplified by the war on drugs – a responsibility to change lies with the individual, a pressure which is often collectively enforced (e.g., by police). On the other hand, people who use drugs can be treated as autonomous individuals who can choose to engage in “managing the harm” which the substances might have on them. On this approach society is conceived as collectively responsibly for providing support for whomever requires it (e.g., in the form of safe injection facilities) and addiction can be conceptualized as something to be managed both medically and holistically.

While the two cases we present in this chapter map loosely onto the two contrasting models, they are not the most extreme examples; in fact, we deliberately chose specific settings and practices which clarify the nuance that the above schema-of-contrast requires. Focusing on the same parameters as points of comparison – core beneficiaries and actors, form of responsibility, mode of surveillance, discipline, time horizons – will allow us to show the continuum of “treatments” between a criminalized war on drugs to collectivized measures of support for autonomous people who use drugs.

John and Mary are (medical) operators in a typical methadone distribution system as it is employed in many countries, from the US and the UK and to most other European countries. In fact, methadone was one of the first measures applied under the guise of the war on drugs in America that can also be seen as a means of harm reduction (Campbell, 2020). Methadone has been shown to have positive outcomes – from a lowered risk of death and reduction of drug use to increased engagement with recovery services and a sense of improvement (Neale, Reference Neale1998 ; Zanis and Woody, Reference Zanis and Woody1998; Bell and Zador, Reference Bell and Zador2000; Brinkley-Rubinstein et al., Reference Brinkley-Rubinstein, McKenzie, Macmadu, Larney, Zaller, Dauria and Rich2018; Moore et al., Reference Moore, Oberleitner, Smith, Maurer and McKee2018). While we do not want to dispute this positive effect that methadone distribution can have for some, we want to focus here on how the principles of the kind of supervised daily methadone distributionFootnote ² go hand in hand with the principles that have been driving the war on drugs for the last fifty years: both are built on ideas of individual responsibility, (time) discipline, surveillance and control, and distract from who should really benefit from drug treatment: the people who take drugs themselves.Footnote ³

The pharma industry producing the different prescription medications are an important financial benefactor from methadone distribution. The business of methadone has seen huge surges in activity in the past five years, more so than the previous decades combined (Vestal, 2018). Pushed by pharmaceutical companies such as Eli Lilly back in the 1970s in the United States, methadone has also seen an increase in production by rival companies, including Purdue Pharma who have long been dominating the alternative painkiller market. Overall it is a 60-million dollar international market expected to grow by at least 5 percent every year going forward (The Express Wire, 2020).

The people administering the prescriptions play a core role, as we have seen above, with the important role that John and Mary take as gatekeepers, disciplinarians, and operators. Methadone distribution brings addiction into the purview of medical professionals based on a view of addiction as a brain disease to be treated by biomedical means. While the development of the brain disease model of addiction has had some benefits in removing moral failure from the (deviant and criminal) individual as the cause of their substance use (Heather et al., 2018), placing addiction firmly into the hands of medicine has led to a number of unfortunate consequences: it obscures the inextricable social and economic conditions that contribute to and underlay addiction, promotes social injustices, and reduces the notion of “cure” to the Western cultural obsession with the fallible “magic bullet” idea (Mendoza, Rivera-Cabrero, and Hansen, Reference Mendoza, Rivera-Cabrero and Hansen2016; Hart, 2017; Heather, 2017). This model puts power into medical professionals’ hands – in particular to enforce discipline and surveillance. One way of how this can occur is very obvious above: through imposing a schedule and consumption pattern onto the people who use drugs. John – and his counterparts and the institutions behind them – set up a specific schedule, a routined timescape of supervised, daily consumption. While many operators, including John and Mary, are highly conscious that building relationships is key for recovery, their freedom to maneuver is small. The network of permissions and conditions – with the doctor in the headquarter being the only one able to change the prescription (to one of weekly distribution, for instance) – as well as the short amount of time spent together in the van directly makes building trust complicated. While empathy is core for many of the professionals we observed, there is very little room for it in the system of almost mechanical methadone distribution. As a result, many of the people who use drugs and who are involved in this scheme feel what Hatcher, Mendoza, and Hansen (Reference Hatcher, Mendoza and Hansen2018) call clinical abandonment – whereby the singular focus on prescribing medication leads to a lack of attention to the multiple oppressions and survival needs of patients. Receiving a daily dosage, usually at the same time, at the same spot, is a perpetual regime with often no endpoint in sight. This routine in itself creates a disruption to people’s usual (drug) practices, but instead of empowering the individual it inserts an institutionally imposed rhythm. As American anthropologist Phillipe Bourgois has stated for a similar case during his observations in San Francisco: this kind of strict regime can lead to – instead of release and support – “metadeath.”

The political economic constraints limiting one’s life chances (i.e., unemployment, felony record, medical bills, housing market, etc.) are already overwhelming, and methadone’s rigid institutional regulations further curtail one’s options for autonomous change. The ethnographic literature on methadone confirms widespread resentment as well as a passive self-deprecating obedience on the part of structurally vulnerable methadone addicts (cf. Rosenbaum and Murphy, 1984). One study quotes addicts as referring to their relationship with methadone as “a ball and chain” (Johnson and Friedman, 1993: 37); other researchers cite methadone addicts as complaining of “feeling like automatons,” and of “becoming robotic” (Uchtenhagen, 1997; Koester et al., 1999). In Denver street addicts had nicknamed methadone “methadeath” (Koester et al., 1999) (Bourgois, Reference Bourgois2000).

On top of this, paradoxically, the imposed discipline is projected onto the individual’s responsibility. The move toward the biomedical conception of addiction corrected the once well-accepted notion that addiction was purely caused by moral failure, laziness, and lack of will. The shift in ideology and policy was however only really one from broken morals to “broken brains” (Wiers and Verschure, 2020). Responsibility for the management and treatment of addiction remains located within the individual: instead of “getting a grip of themselves,” people who use drugs are now expected to structure their schedules around the methadone distribution. This expectation has been highly criticized for its unrealistic demand on people who use drugs and also for singularizing responsibilization (Heather, 2017). In fact, progress is “measured” (and constantly surveilled, see Mary taking notes above) based on whether people can keep to appointments and how they are moving along their projected “dosage timeline.” The titration of doses is a direct link to the perception of how far along the recovery process people have progressed (Bourgois, Reference Bourgois2000). Oftentimes, if a person misses too many appointments, they are penalized through this instrument: the people might be made to start over their “methadone course,” or regress a few stages (i.e., take a higher dosage again). No change to the rigid treatment course is possible apart from renewed plans following check-ins with doctors – putting the medical professional again in the role of a disciplinary and overseer. Not only does this approach present a false linear conception of recovery, it also puts blame squarely and singularly on the individual. If a person doesn’t progress on the path of their recovery, usually with the ultimate goal of abstinence, then it is their fault. Bourgois notes that this shift created and reinforced the perception that a person who remained addicted to heroin was seen as “self-destructive and irresponsible,” while someone nearly permanently maintained on methadone was praised as a “worthy, well-disciplined citizen/patient who is dutifully on the road to recovery from substance abuse” (Bourgois, Reference Bourgois2000: 169). The social and communal responsibility of stakeholders other than the people who use drugs is not defined as essential; as it is, methadone maintenance is only conceived of as a collective effort insofar as some programs are free as part of public health interventions.

Where does that all leave the people who use drugs? How do they benefit from methadone programs? While we undeniably recognize positive lived experiences with methadone, many people who use drugs either categorically or based on their own experiences with the disciplinary regime (of daily, supervised pickups) laid out above keep away from the programs. A number of interlocutors we have spoken to over time have described the inefficacy of methadone at best, and addiction to methadone and as a result a lowered sense of self at worst. One man in the UK, James, who had struggled with addiction since his teens, explained to us that methadone still felt like the drugs he wanted to get away from:

Naturally, interlocutors also expressed frustration with the medical professionals – doctors, nurses, pharmacists – who worked to facilitate the prescription, administration, and any possible change in scripts. The frustration stemmed not only from the nature of the inevitable entwinement of care and coercion, but also from a lack of empathy. James relayed, “I’ve been offered help by the government before with getting off drugs and it just seemed to be sitting around chatting or getting methadone and I don’t know, people who didn’t have that sort of life experience, I didn’t really see how they could understand or help me.” Many of the current healthcare workers who monitor methadone programs are not people who used to use drugs and as a result, lack the kind of understanding and relatability that many interlocutors mention is important to them. Trust relationships – found to be so crucial for the development of meaningful therapeutic relationships and recovery (Collins et al., Reference Collins, Alla, Nicolaidis, Gregg, Gullickson, Patten and Englander2019; Petterson et al., 2019) – can develop less easily.

We also want to shine a light on a last actor we have so far not mentioned as a crucial participant: law enforcement. As we explained above, methadone is often part of what we describe as a criminalized system of drug treatment where drugs (usually involving the production, possession, consumption, and commercial activity around them) are illegal. Hence, law enforcement plays a crucial role as a further disciplinarian. Continuing Victor’s story briefly will help us further understand law enforcement’s role.

The street right around the corner from where the distribution van parked close to a major underground station was widely known as one of the main trading spots for drugs. One street corner housed mostly the opioid dealers stocked with both prescription and illegal substances, as well as – if need be – the necessary prescriptions to legally carry the former through the city. At the other end of the short street, crack could be purchased at any time of the day. The police knew about the trading – and also about the methadone distribution in the middle of it. Officially, only the trading was the excuse for their almost daily checks; conveniently, the van made it easy for the officers to find but also to identify people who use drugs. The fact that many of the registered methadone users were also taking “on top,” i.e., regularly consumed opioids and other illegal substances, made them an easy target for stop-and-search controls by law enforcement. Chances were that they not only came outside to drink their daily dosage of methadone but also to stock up on other substances at the same time.

Viktor – despite being white – was stopped regularly by the police. He was widely known as a heavy poly-drug user and many of the searches he was subjected to were often successful. “They look through all your belongings – searching for drugs. That’s it.” The likelihood was high that Viktor had some methadone he had bought on the streets with him (that he had bought on the street on top of his free daily ration from the van), or another subscription opioid, or used syringes, or crack left in the glass pipe he always carried with him (and that was also handed out by the methadone van as a means of harm reduction). If Viktor didn’t have the right prescription with him for either the methadone or any other prescription drug, the law enforcement would take him in. The same was true for other obvious paraphernalia, and while the tools themselves wouldn’t be enough for a sentence, they led to a drug test which in turn could lead to a prison sentence.

The methadone distribution, particularly in systems where overall principles of the war on drugs (e.g., the illegality of drugs) are still in place, in fact not only presented a disciplinary regime enforced by the medical professionals; it also created a convenient time and place for police officers to locate and stop persons they suspect of taking part in illegal activity (Lupick, 2018). Worse, the responsibility of law enforcement is framed as justifiably continuing to criminalize drug use – proven to not only disproportionately affect marginalized communities but also making it nearly impossible for people who use drugs to recover, trapping them in endless cycles through the penal system and addiction (Rodgers, Reference Rodgers2020).

Safe injection sites like the one we describe above have only been adopted very slowly over the last twenty years; the first one in North America, Insite, opened in Canada in 2003 (Boyd, Reference Boyd2013; Kerr et al., Reference Kerr, Mitra, Kennedy and McNeil2017). While Canada now has 39 SISs, still none exist in the United States (Government of Canada; Kerr et al., Reference Kerr, Mitra, Kennedy and McNeil2017). Parts of Europe have taken the lead in rolling them out; the Netherlands, Germany, Switzerland, Denmark, Norway, parts of Spain, and most recently France (on a trial basis) have been engaged in this policy. In 2018 ninety official sites were open in Europe in eight countries (including Switzerland) (EMCDDA, 2018). Portugal, Ireland, and Belgium have opened sites, as well. SISs represent a fundamentally different approach to addiction from the “war on drugs” and also from methadone distribution; they not only stand for comprehensive harm reduction instead of criminalization, but also emphasize the importance of collective solidarity and care instead of individualized control and responsibility.

One reason for this different ethos in place in most SISs might be the kind of core actors involved; many of the early SISs sprang out of activist efforts, often driven by people with lived experience of drug use and addiction themselves. They knew from the start what, for instance, the problems with the war on drugs were – from violence and coercion to discipline and control – and what kind of a space was really lacking. As a manager in a Vancouver SIS, whom the journalist Lupick encountered, described:

Unlike methadone programs, SISs are designed to not only provide a “medicine” for people using drugs but also a safe, accessible, and open space; they embody a safety net that does not coerce individual behavior while offering guidance and support whenever desired and chosen by the people who use drugs. Here, the SIS’s staff are more easily structurally filling in the role not of a surveilling enforcer but a supportive hand to catch people in case they overdose, or to push them with a gentle nudge toward seeking help with various specialized services when they are ready (such as a rehab facility). Drugs are not fundamentally seen as deviant and as in need of replacement; individual people’s choices to consume are respected, and support provided to mitigate harm. Lupick reflects with the same sentiment on his observations of the role of staff in Vancouver; he concludes that their “job was to meet the patients where they were at, and then to help them there” and to ask people, “how can we support you?” (Lupick, 2018: 165).

This attitude of staff also shines through very strongly in the treatment of time; while for many people methadone program’s time was a disciplining factor as we describe above, in most SISs it is a buffer. The people who use drugs can form, use, and shape the intervention and space in the way they want both in the short and long term. They were welcome as many different times and in whatever interval they chose (in contrast to the rigid pickup system in the case of a daily-supervised methadone distribution). At the SIS “they can prepare their injection with a clean needle, taking their own time … cutting down on the chance of mistake,” and a nurse is close by – but not hovering – to make sure to mitigate any negative reactions such as an overdose (Patel Shepelavy, Reference Patel Shepelavy2018). This practice of “taking one’s time” is usually correlated with decreased risky behavior (e.g., injecting more calmly, no syringe sharing, disposing of syringes more securely, at times even injecting less frequently) (Boyd, Reference Boyd2013; Kinnard et al., Reference Kinnard, Howe, Kerr, Hass and Marshall2014). On the other hand, in a more long-term timescale, the SIS was not built around the assumption of a linear and enforceable process of recovery (punished for instance by the means of decreasing titration and “throwing you back” on your recovery path as a means of disciplining). Interestingly, as a result, SISs have been shown to be spaces where people who use drugs are “more likely to take steps into sobriety” – but on their own timeline (Lupick, 2018: 344; see also Wood et al., 2016; Drug Policy Alliance; AMA, 2017).

SISs foster the empowerment of one’s own sense of self and time, allowing people who use drugs to set their own timelines, rhythms, and agendas as autonomous individuals. People are more likely to “engage” with services on offer (therapy and rehab for instance) and a radically reduced number of overdose deaths (Bowers, Reference Bowers2019). For example, a legally unsanctioned experiment site opened by a social service agency in the US saw 10,514 injections and thirty-three opioid-involved overdoses over five years; not a single death occurred as all thirty-three overdoses were reversed by naloxone (Kral and Davidson, Reference Kral and Davidson2017; Kral et al., 2020). SISs have also been shown to drastically decrease the number of HIV/AIDS and hepatitis C infections (Highleyman, Reference Highleyman2018). These numbers demonstrate that not only do people who use drugs benefit but so does the healthcare system more broadly. The healthcare system overall, even by the most conservative estimates, saves money and life-years. In Vancouver, a SIS observed more than $18 million in incremental net savings per year and the number of life-years gained amounted to 1175 (Bayoumi and Zaric, Reference Bayoumi and Zaric2008). In Sydney, Australia, the burden on ambulance services on opioid-related deaths decreased drastically in the surrounding vicinity of a SIS (Salmon et al., Reference Salmon, Van Beek, Amin, Kaldor and Maher2010). Tentatively, overall crime rates are going down over time in cities where SISs are operational, reducing the pressure on law enforcement (and the penal system) (Myer and Belisle, 2017).

This benefit was made even more stable and secure when embedded in a reform of the criminal justice system. Let us go back briefly to the situation from our second case below with the continuation of the description:

Stepping outside back into the city, people were able to continue to feel safe; the facility was not installed as an isolated, unreflected push but as part of a much wider rethink of how people who use drugs were supposed to be treated. The two most important accompanying changes were about legislation and law enforcement. On the one hand, a decriminalized zone of about ten blocks was created around the SIS overseen by the police. This did not mean that police stayed away from the SIS or the zone as a whole, but that they fulfilled a fundamentally different task: instead of enforcing rules around illegal possession and consumption of drugs (both of which were legal within the zone, for personal use), police oversaw dealing activities (which remained illegal) and breakouts of violence. For this to happen, the legal structure had to be changed to allow possession of certain (illegal) substances for personal use (Fortson, 2006).

The distinct groups that had previously worked toward fulfilling different goals and different agendas – from people who use drugs, healthcare workers, social workers, law enforcement officers, politicians, and legislators – were united. A shift in attitude, even including the neighbors who had most adamantly opposed SIS, was occurring quickly.

Establishing a zone of decriminalization around the SIS – as happened for instance in Denmark (Kinnock, Reference Kinnock2019) – and ideally changing the drug laws (especially around possession and consumption of drugs) more generally expands the possible impact of the intervention even further. What results is not just healthier pursuits for people who use drugs, but a fundamental shift in how our society thinks and acts on drugs. It more directly signals a rethinking in terms of responsibility: instead of placing the locus of responsibility purely with the individual (as with the methadone distribution), SIS offers people who use drugs a community that ideally extends beyond the simple facility site. The SIS can act as a central point for learning about access and connection with other services and other users, whether it is for basic needs or specific support for addiction. The zone of decriminalization around the site reinforces this sense of trust into the wider geography, thus establishing a space of security and stability so crucial for working toward any eventual recovery and abstinence (Treloar et al., Reference Treloar, Rance, Yates and Mao2016).

16.2 Conclusion

Though it may seem a thing of the past, the war on drugs persists. Several countries including the US, the Philippines, Mexico and to a certain extent the UK still explicitly follow the principles of violence, surveillance, and criminalization in their policies toward addiction. What is holding us back if there are alternatives such as harm reduction approaches out there that are proven to be beneficial on multiple axes? There is no clear answer, but we believe one significant factor is ideology.

One of us was at a panel in late 2019 in the UK to discuss this exact question: what keeps us back from changing? The panel included a person with lived experience of addiction and homelessness, one support worker, the editor of an international medical journal, and the author. We heard a lot about local efforts to support homeless people struggling with addiction, about the role of voluntary organizations, and spoke for almost an hour circling the question of inadequate drug treatment generally. Given that the data points in a clear direction – harm reduction and specifically SISs are more cost-effective, safer, empowering – we concluded that the decision not to shift toward such approaches and away from “war on drug” practices was a political decision influenced by ideology. This ideology is rooted in a kind of artificial morality that has long been used to divide people – one that took hold especially in the lead up to and beginnings of the era of the war on drugs, where policies were enacted to demonize minority populations such as African Americans. This is an ideology of individualized responsibility and a total lack of collective support; an ideology that sees the police and also healthcare providers as a means of surveillance and control rather than helping hands for citizens. Its insidious legacies remain, and we must be critical in examining the consequences of modern policies. Addiction has to move away from being seen as an issue of deviance that requires law enforcement to step in (and put people who take drugs in prison). While the next step is conceptualizing drugs primarily as a public health concern that demands care and solidarity, the underlying shift is an even bigger one. We have to begin seeing people who use drugs – like all people – as autonomous individuals and respect their decisions to determine the extent of which drugs play a role in their lives; we have to see all people as part of our collective society which encourages agency, mutual support, and empathy.

17.1 Introduction

Switzerland and the United States both rely heavily on private health insurance companies to expand access to coverage. Despite this seemingly common starting principle, decisions about how to design and implement healthcare access have resulted in the creation of two vastly different health systems.

The differences between the two systems are the product of a century of policy choices driven by different views on the right of citizens to access care and the role of government in the administration and regulation of the industry. Over the past few decades, the United States and Switzerland have both reached critical junctures motivated by similar challenges – the need to expand access to coverage. Both countries faced similar barriers: rising uninsured rates, rising per capita health expenditures, and insurance companies that were denying high-risk patients’ coverage. The reforms offered in both countries were designed to address these challenges and did so with some degree of success. But critical differences in approach have yielded hugely different outcomes today.

The World Health Organization considers healthcare one of the fundamental rights of every human being. Whether healthcare is a right is a question of morality. But among the wealthiest countries in the world, this appears to be a settled question. The United States is the only country out of the top twenty-five that does not provide universal health coverage, and is a striking outlier given that 54 percent of Americans believe the government has a responsibility to ensure Americans have healthcare coverage (Jones, Reference Jones2019).

Over the last twenty-five years, both countries passed historic reforms with the aim of dramatically expanding access to coverage. Given that both these systems have historically relied on for-profit private insurers, it’s important to understand that health insurance is most profitable when it is providing services to the fewest sick people. If the goal is profit, health insurance for a person who is both healthy and wealthy isn’t hard to manage, but making money selling insurance to a person who is both sick and poor is impossible. Group health insurance solves this problem by pooling the risk of many individuals together, but it’s tricky. Charge too much and healthy people don’t sign-up, leaving you with just expensive sick people. Charge too little and sick people cost more than your revenue. As across-the-board costs increase, the problem gets even more complicated – even middle-income people can’t afford coverage. But for a for-profit company, covering the sick hurts the bottom line, which some might consider a contradiction for an industry whose purpose is to help people when they are sick. For this reason, government regulation and subsidization of this sector has been vital to the expansion of access to care around the world for nearly a century.

An informed consumer that knows their own preferences is also a vital part of a functional market process. Do they know how to obtain insurance? Will it have the benefits they need? Is it optimal for their budget? What does it cost if they break a leg? Develop diabetes? Get Cancer? Or a rare disease? The more choices the consumer faces, the more complex the system, the more hypotheticals they are expected to evaluate, the harder it is for them to assess comparative values of choices and make informed decisions.

In America and Switzerland, both countries that celebrate capitalism, there is an understandable desire to use market processes to drive efficiency and innovation. But recognizing the inherent limitations in the market’s ability to deliver efficiency in this space is vital to the design of an efficient health system. Government regulation and assistance are critical to the goal of universal coverage – the private sector alone cannot be the solution. If the goal is universal coverage, the idea that we just need one more guardrail to keep a bad actor in check or one more incentive to motivate good behavior is like trying to build a Rube Goldberg machine to make breakfast. Even if you could do it, why would you if there was a better way?

We’ll take a look at the history of healthcare access in the United States and Switzerland, how each country approached major health reform initiatives, the result of that reform, and whether there is a better way.

17.2 Unfolding of the Setting

17.3 How the Solution or Action Came to Be

17.4 Explanation of What the Solution Looked Like in Practice: What Were the Anticipated and Unanticipated Consequences?

17.5 Analysis of What Happened

17.6 Conclusion