Human-centred design, disability and bioethics.

Human-centred design methodologies provide a means to align bioethical advocacy with the needs and desires of disabled people. As a method, human-centred design seeks to locate points of friction in an individual's experience of everyday interactions, specifically in relation to technologies, but potentially in relation to processes and institutions. By focusing on disabled persons and their experiences of institutional organisation, human-centred design practices serve to create a foundation for a bioethical practice that addresses idiosyncratic needs and desires while providing support for disabled persons and their families. In considering how a design-focused bioethics might operate in this way, I focus on advanced sleep phase syndrome and delayed sleep phase syndrome as a way to show how the temporal ordering of institutions disable the participation of individuals with atypical sleep needs. I then turn to the education of deaf students through the exclusive use of sound, which puts them at a significant disadvantage relative to their hearing peers; this example shows how normative ableism obscures itself in attempts to aid disabled people, but an attention to the experience of deaf students show how exclusively auditory learning can be redesigned. Advocating for flexible institutional organisation and practices situates bioethical advocacy as a means to engage with social organisations in ways that create novel opportunities for able-bodied and disabled people alike.

Neurological disorders, affective bioethics, and the nervous system: reconsidering the Schiavo case from a materialist perspective.

This article proposes a novel approach to bioethics, referred to as "affective bioethics", which draws on traditions in anthropology, science and technology studies, disability studies, and Spinozist materialism. By focusing on the case of Michael and Terri Schiavo, in which Terri's personhood and subjectivity are challenged by dominant forms of neurological reductivism in the USA, this article suggests that approaching her condition as a set of relations with the people in her life and her socio-technical environment may have helped to develop new ways to conceptualise personhood and subjectivity moving beyond the view of her as a non-person. Drawing on Michael Schiavo's memoir of his legal battles, and Terri's diagnosis and care, this article shows how Terri's connections to the world disrupt American ideas about the isolatable individual as the basis for personhood and subjectivity. Attending to these interpersonal and socio-technical connections focuses bioethical attention on the worlds that individuals inhabit, and how those worlds might be designed to make more kinds of life livable and new forms of personhood and subjectivity possible.

Multibiologism: An anthropological and bioethical framework for moving beyond medicalization.

Recent approaches in the medical and social sciences have begun to lay stress on "plasticity" as a key feature of human physiological experiences. Plasticity helps to account for significant differences within and between populations, particularly in relation to variations in basic physiological processes, such as brain development, and, in the context of this article, daily sleep needs. This article proposes a novel basis for the redevelopment of institutions in accordance with growing awareness of human variation in physiological needs, and articulates a theory of multibiologism. This approach seeks to expand the range of "normal" physiological experiences to respond to human plasticity, but also to move beyond critiques of medical practice that see medicine as simply responding to capitalist demands through the medicalization of "natural" processes. Instead, by focusing on how the institutions of U.S. everyday life-work, family, and school-structure the lives of individuals and produce certain forms of sleep as pathological, this article proposes that minor alterations in institutions could result in less pathologization for individuals and communities. Multibiologism provides a foundation for shared priorities in the social sciences, in bioethics, and in medical practice, and may lay the groundwork for emergent collaborations in institutional reform.

Chronic Subjunctivity, or, How Physicians Use Diabetes and Insomnia to Manage Futures in the United States.

Prognostication has become central to medical practice, offering clinicians and patients views of particular futures enabled by biomedical expertise and technologies. Drawing on research on diabetes care and sleep medicine in the United States, in this article we suggest that subjectivity is increasingly modeled on medical understandings of chronic illness. These chronic conceptions of the self and society instill in individuals an anxiety about future health outcomes that, in turn, motivate practices oriented at self-care to avoid negative health outcomes and particular medical futures. At its most extreme, these anxieties of self-care trouble conceptions of self and social belonging, particularly in the future tense, leading patients and clinicians to consider intergenerational and public health based on the threats that individual patients pose for others.

Normal, Regular, and Standard: Scaling the Body through Fecal Microbial Transplants.

In 2013, the National Institutes of Health (NIH) and the Food and Drug Administration (FDA) held a workshop to determine the risks and benefits associated with the experimental use of fecal microbial transplants to treat Clostridium difficile and other gastroenterological disorders. By focusing on the proceedings of the NIH-FDA workshop on the treatment of the human microbiome, the question of how medicine colonizes human bodies through microbial transplants raises questions about what an individual body is, how determinative of human health the microbiome is, and what the limits of molecular biomedicine are when the microbiome is taken into consideration. In the workshop presentations and discussion of this emerging treatment, experts used ideas about the normal, regular, and standard to move between scales of bodily analysis, from the microbial to the body politic, demonstrating how the individual and society are deeply influenced by the unruly community of microbial symbiotes that humans host.

Therapy, remedy, cure: disorder and the spatiotemporality of medicine and everyday life.

Increasingly, there is a temporal differentiation among kinds of treatments available through medicine. Cures offer one-time resolution of symptoms; that is, with the benefit of a cure, there is no longer a medical problem in need of treatment. Remedies offer temporary, situational relief of symptoms. Therapies offer temporary relief of symptoms, but promise the possibility of nonsituational fixes, offering universal cessation of symptoms but only for a limited time. Therapy has become increasingly integral to the rhythm of everyday life, particularly in the United States, where medical treatment and pharmaceutical consumption have become a means for normalizing oneself to social expectations. I draw on fieldwork with people who experience sleep disorders-narcolepsy, sleep apnea, and delayed and advance sleep phase syndrome-to explicate these models of treatment and consider how these medical spatiotemporalities formulate emergent everyday orders of life.

Extremities: thresholds of human embodiment.

Emergent conditions of life at the end of the first decade of the twenty-first century create new opportunities and challenges for medical anthropology. The articles included in this special issue of Medical Anthropology suggest four areas that call out for more attention: the changing scientific and philosophical status of the human, including definitions of life and biology more broadly; the material consequences of anticipatory fictions; the expanding and intensifying forces invested in the production of bodies; and the emergent and historical conditions shaping expectations and experiences of bodies as they are managed and lived. In elaborating the significance of these issues, we provide an introduction to the articles included in this special issue and point to how the contributions to this collection offer models for approaching emergent forms of life.

Precipitating pharmakologies and capital entrapments: narcolepsy and the strange cases of Provigil and Xyrem.

Since the mid-1990s, Americans have been made more aware of chronic sleep deprivation and sleep disorders exacerbated by dominant temporal regimes of work, school, and family life, primarily through increased medical and media attention. Concomitantly, Americans have turned to medical treatments and pharmaceutical cocktails to achieve normalcy rather than attending to the social and cultural causes of sleep sickness. This turn toward pharmaceuticalization is aided in part by the proliferation of medical disorders and the pharmaceuticals marketed to treat them (e.g., "excessive daytime sleepiness" requires treatment once reserved for narcoleptics). These cocktails have explicit and implicit components: the former consist of pharmaceuticals, the latter of capital dependencies, including ties to medical insurance companies, stable employment, and familial networks. In this article, I examine the proliferation of pharmaceutical cocktails through the concept of the pharmakon-something simultaneously remedy and cause-to illuminate the causes and effects of such pharmaceutical regimens in contemporary American society, specifically those relating to sleepiness. Specific cases of this struggle between chemical dependence and normalcy are offered from my ethnographic work with patients who suffer from sleep disorders.