Welcome to the first of several excerpts from my dissertation draft. The following passage highlights key sections from the dissertation introduction. It explains some of the important aspects of the overarching theoretical framework of the entire dissertation. Citations are at the end for anyone interested. Enjoy!
“No Do-Overs With Food Allergies, Only Tragic Endings” screamed the headline of a September 29, 2015 Huffington Post Parents Blog post by Lianne Mandelbaum. “No Sandwich Is More Important Than a Child’s Life” asserted another from September 23, 2015 by Heather Spohr. On my bookshelf for months, a book called The Peanut Allergy Epidemic by Heather Fraser was hard to ignore, with its disintegrating, blood-red, all-caps spine lettering.
In communities where deadly infectious childhood diseases have largely retreated, food allergies have taken their place as a medico-moral cause célèbre for mothers, medical workers, and medical researchers seeking ensure the safety of innocent children. The fear has some basis in fact in the United States, if public health statistics are to be believed: somewhere between 5% and 8% of US children have a food allergy (as well as 5% of adults), with about 25% of food allergic children are allergic to peanuts   . Even social scientists are not immune to the disease’s allure; they have referred to food allergies as an epidemic, a plague, the quintessential “modern malady,” a disease characteristic of civilization   . Their mysterious etiology – a combination of environmental exposure, heredity, and individual biology – unpredictable development, apparently sudden increase, and potentially deadly effects make them a source of fear for parents worldwide.
This dissertation records my journey into the food allergy world in the United States. It argues that medical care is a deeply moral practice, even when it is carried out under the banner of rational, scientific biomedicine. Questions about what to do to care for someone with food allergies are motivated both by a sense of emergency – an immediate need to act in order to save lives – and aspirational considerations about how one can, or should, live with the condition. Food allergy advocates are engaged in a project of expanding the sphere of responsible caretakers beyond the confines of the nuclear family, enlisting educators, policymakers, and the public to the effort through activism and legislation. Mitigating the risks of food allergies to the allergic individual ought to be a project of communities and societies, in the view of those involved with food allergies, including parents, patients, researchers, and professional advocates. As healthcare in so-called developed countries shifts away from the treatment of infectious disease and toward the management of chronic, “lifestyle” diseases (which are increasingly understood as disorders of the immune system), this style of patient activism and the vision of society it promulgates will become a more prominent fixture in debates about how to care for chronically ill and disabled populations. The goings-on in the food allergy world stand in as a “moral laboratory”  for the broad social changes that accompany the changing practical and epistemological regimes of biomedicine.
Three complementary analytic concerns fall under the umbrella of “the moral” as an underlying motif in biomedicine. Concerns about the moral potency of particular medical technologies have been worked out in the STS and anthropology of medicine literatures. To date, life-preserving and reproductive technologies have dominated discussions about the effects of medical technologies on the moral institutions of society, such as kinship and political economy. For those living with food allergies, “life-preserving technologies” include both sophisticated medical devices, like epinephrine auto-injectors, and quite ordinary domestic and industrial techniques of food production.
A second component of the moral is the politics and rhetoric of the risk posed by food allergies, since measuring and reducing risk accurately and consistently means, potentially, saving lives. Risk is potent in contemporary politics because it seems to rationalize a sense of moral precarity – the sense that at any moment something can go wrong, causing injury to limb and life, friends and kin. In food allergy, what is most often stated to be at risk are the lives of vulnerable children. Reducing the risk of allergic reactions in children is a way to safeguard the next generation; it is a project important for social reproduction. Preventing risky allergic reactions thus becomes a moral project, with domestic sphere activities like food preparation and motherly caretaking becoming the techniques of choice for mitigating potential harms.
The third issue at stake in the moral is that of caring for people with chronic illness and disability. How best to care for people with physical differences or impairments is often framed as a political issue, an economic issue, or an issue of rights to access the resources needed to live “the good life.” This analysis insists on also considering the moral obligation to take care of people with chronic medical conditions – and the characteristics, expectations, and constraints placed on those who are assumed or made into caretakers.
My analytic conception of “the moral” is rooted in concern about the practices and meanings of care work that became evident in the course of my research. The food allergy world is an interesting site for deliberations about an analytic definition of “the moral” because the specific caretaking practices associated with this condition challenge what we ordinarily think of as “taking care” of someone with illness. For people with food allergies, “taking care” of oneself or another allergic individual largely consists of meal planning, grocery shopping, filing forms to ensure accommodations, and being prepared to intervene upon the cared-for person’s body directly directly using epinephrine auto-injectors in moments of crisis. These are activities of the private sphere and of the home – activities that are gendered female in American society.
This is in sharp contrast to the kind of intensive bodily contact that “taking care” entails between lower-level medical workers (such as medical aides) and their patients   in many Western biomedical contexts or between ill and well relatives where Western biomedicine becomes entangled with non-Western traditions of healing and care  . For the middle- to upper-middle-class milieu of the majority of my participants, the circle of caretakers includes not only oneself and one’s close family, but also public servants such as schoolteachers and coaches, paid caretakers and private school staff, and the producers of specialty goods such as processed foods and small luxuries like restaurant meals. These individuals are, one way or another, paid for their services, yet the life-or-death stakes of preventing or responding promptly to an allergic emergency seems to add an extra sense of urgency and obligation to their work.
|Organ transplantation remakes
the meaning of human life and worth.
Discussion about the explicitly moral implications of medical care has been most salient in the now extensive literature on the commodification of human organs brought about by the capacity for biomedical doctors to transplant organs from one person to another     . Carving up the physical body and depositing its pieces into other bodies challenges customary notions about the equivalence of the body with an individual’s identity. If pieces of bodies can be exchanged, what does that mean for the integrity of embodied personhood? The ability to harvest organs from human bodies also destabilizes the appearance and meaning of the moment of death. Technologies like ventilators can now keep bodies alive in order to support very ill individuals as well as to preserve organs for transplantation. Their use raises questions about the moral implications of ending body-preserving treatments and the legal and medical procedure for declaring the “person” dead when the body remains alive  .
As they circulate, the use of medical objects and technologies is rationalized by reference to bioethical frameworks, market demands, and the moral good of saving lives (although only certain (typically whiter and more affluent) lives are deemed worthy of saving, while the rest are worthy of “donating” their “extra” parts). Many of the ethical and legal frameworks governing their use emerge on the fly or retrospectively, illustrating how the material and discursive “lives” of biomedical objects are generative of new configurations of morality and social relations.
I use “moral” to describe those practices and logics that structure relations of care and obligation between actors within and adjacent to food allergy families and communities. What is done to care for others in my limited context is suggestive of the intangible moral ties that exist more generally between people with chronic illness and those who care for them.
Food allergy is a disease that is difficult to understand and manage in the context of modern biomedical science and healthcare delivery systems. Food allergy advocates face an uphill battle gaining recognition for the disease from friends, family, and institutions and the legal protections they deem necessary to live safely with it. Drawing on the moral potency of the power of epinephrine, the hygienic sublime, and the special moral status of children form the foundations of their claims. In making these claims, traditional gender norms and uneasy alliances with pharmaceutical industry actors are created and reinforced. The story of the food allergy world is a story of making a disease real, of making a trend into an epidemic, and of negotiating how care ought to be provided to those in society deemed ill and vulnerable. In all these ways, it is paradigmatic of the issues facing healthcare delivery and illness communities in the United States today.