Nikolas Rose describes “late liberalism” as a shift in state responsibility from a role that grants and guarantees rights to one that ensures that the market operates through law and order. Describing this shift, he states, “The relation of the state and the people was to take a different form: the former would maintain the infrastructure of law and order; the latter would promote individual and national well-being by their responsibility and enterprise.” See Nikolas Rose, Powers of Freedom: Reframing Political Thought (Cambridge: Cambridge University Press, 1999), 139. This era entails the shrinkage of the government’s social functions under the auspices of “freeing” the economy and a new set of government rationalities and practices—commonly referred to as “neoliberal”—that aim to produce subjects that are self-enterprising, productive, autonomous individuals. These neoliberal rationalities do not so much roll back the state as they create widespread institutional/policy, cultural, and legal conditions that optimize the economy through the entrepreneurship of individuals, families, firms, and so on. According to Wendy Brown, neoliberalism is “a governing rationality through which everything is ‘economized’ and in a very specific way: human beings become market actors and nothing but, every field of activity is seen as a market, and every entity (whether public or private, whether person, business, or state) is governed as a firm. . . . Neoliberalism construes even non–wealth generating spheres—such as learning, dating, or exercising—in market terms, submits them to market metrics, and governs them with market techniques and practices. Above all, it casts people as human capital who must constantly tend to their own present and future value.” Refer to Wendy Brown, interviewed by Timothy Shenk, “Booked #3: What Exactly Is Neoliberalism?,” April 2, 2015, https://www.dissentmagazine.org/blog/booked-3-what-exactly-is-neoliberalism-wendy-brown-undoing-the-demos (accessed March 26, 2018).
Nikolas Rose, The Politics of Life Itself: Biomedicine, Power, and Subjectivity in the Twenty-First Century (Princeton, N.J.: Princeton University Press, 2007), 25. Rose continues, “From official discourses of health promotion through narratives of the experience of disease and suffering in the mass media, to popular discourses on dieting and exercise, we see an increasing stress on personal reconstruction through acting on the body in the name of a fitness that is simultaneously corporeal and psychological” (26).
Biomedicialization temporally follows an earlier period of medicalization—which marks social transformation of the last half of the twentieth century wherein aspects of life (previously considered outside the domain of medicine) became folded into an expanding arena of medicine and construed as “medical problems.” Refer to Adele E. Clarke, Laura Mamo, Jennifer R. Fishman, Janet K. Shim, and Jennifer Ruth Fosket, “Biomedicalization: Technoscientific Transformations of Health, Illness, and U.S. Biomedicine,” American Sociological Review 68 (2003): 161.
Clarke et al., 162. Also see Adele E. Clarke, Laura Mamo, Jennifer Ruth Fosket, Jennifer R. Fishman, and Janet K. Shim, eds., Biomedicalization: Technoscience, Health, and Illness in the U.S. (Durham, N.C.: Duke University Press, 2010).
We argue that affirmation is central to biopolitics and is regulatory and normative. As we explain later in this introduction, this approach is different than that of “affirmative biopolitics,” which positions itself as a critique of the “negative” side of biopolitics; affirmation by this account refers to the reclaiming of life from governmental apparatuses. See, for example, Roberto Esposito’s trilogy Bios: Biopolitics and Philosophy (Minneapolis: University of Minnesota Press, 2008), Communitas: The Origin and Destiny of Community (Stanford, Calif.: Stanford University Press, 2009), and Immunitas: The Protection and Negation of Life (Cambridge, Mass.: Polity, 2011).
Thomas Lemke, Foucault, Governmentality, and Critique (New York: Routledge, 2016), 13.
Michel Foucault, The History of Sexuality: Vol. 1. An Introduction, trans. Robert Hurley (New York: Vintage Books, 1990), 136. Biopower is distinct from an earlier form of power that Foucault calls sovereign power. “Sovereignty took life and let live.” It was a form of power that was negating, legislative, prohibitive, censoring, and homogenous. See Michel Foucault, Society Must Be Defended: Lectures at the Collège de France 1975–1976, trans. David Macey (New York: Picador, 2003), 247. Thus, where sovereign power operated in a repressive sense, modern biopower is normalizing and productive. This is not to say that forms of sovereign power are not still exercised. It recedes, however, because “life more than law became the issue of political struggles.” Foucault, History of Sexuality, 144.
Éric Darier, “Foucault and the Environment: An Introduction,” in Discourses of the Environment, ed. Eric Darier (Oxford: Blackwell, 1999), 22.
Thomas Lemke, Biopolitics: An Advanced Introduction (New York: New York University Press, 2011), 37.
Foucault, Society Must Be Defended, 241.
Note that, according to Foucault, discipline emerged prior to biopolitics. Disciplinary power, as Foucault tells us, began to take hold in the late seventeenth and early eighteenth centuries (whereas bioplitics emerged in the second half of the eighteenth century): he links discipline to the rise of industrialization and capitalism. Per Deborah Cook, “Foucault describes the relation between power—the disciplinary colonization of the body—and the economy as both reciprocal and complex.” See Cook, “‘Is Power Always Secondary to the Economy?’ Foucault and Adorno on Power and Exchange,” Foucault Studies, no. 20 (2015): 186.
Michel Foucault, Discipline and Punish: The Birth of the Prison, trans. Alan Sheridan (New York: Vintage Books, 1995), 170.
In contradistinction to the sovereign and juridical model of power as repressive (i.e., taking life) and an “oppressive” understanding of subjection—such as seizure or punishment—this model of power targets the body to produce certain kinds of subjectivity that are obedient to normalizing technologies. These normalizing technologies enlist norms that are gendered, racialized, corporealized, medicalized, militarized, and so forth—that call forth/interpellate subjects as such. Note that discipline does not equate to “passivity” but, rather, the process of subjection that involves, in Judith Butler’s words, “the principle of regulation according to which a subject is formulated or produced.” Refer to Foucault, Discipline and Punish, 29; Judith Butler, The Psychic Life of Power: Theories in Subjection (Stanford, Calif.: Stanford University Press, 1997), 84.
Foucault, Society Must Be Defended, 242.
Foucault, 242–43. Also see Cook, “Is Power Always Secondary to the Economy?,” 187. As Thomas Lemke has noted, “They [discipline and biopolitics] are not independent entities but define each other. Accordingly, discipline is not a form of individualization that is applied to already existing individuals, but rather it presupposes a multiplicity. Similarly, population constitutes the combination and aggregation of individualized patterns of existence to a new political form. It follows that ‘individual’ and ‘mass’ are not extremes but rather . . . simultaneously aims at the control of the human as individual body and at the human as species.” Lemke, Biopolitics, 37–38, emphasis added.
In our reading of Foucault, it is biopolitical power that is more thoroughly focused on “life”—and that marks “power’s hold over life.” Foucault, Society Must Be Defended, 239. Indeed, Foucault distinguishes between “the regulatory technology of life [biopolitics] and the disciplinary technology of the body” (249). Biopolitics, he tells us, “is centered not upon the body but upon life” (249). This is not to say that disciplinary power does not come to concern itself with life-making: as we note, precisely because biopolitics embeds itself within discipline, disciplinary operations often work in line with biopolitical operations to “make live.” Both discipline and biopolitics, however, ultimately compose the power over life that Foucault names biopower. See Lemke, Biopolitics, 36.
Foucault explains how the population becomes the subject and object of power focused on “improving life.” Processes of “regularization” work to foster certain kinds of life, regularize those lives, and massify individual bodies and selves for governing in order to then foster and extract the capacities of that collective “life” or body of the population. Refer to Foucault, Society Must Be Defended, 248.
Pasquale Pasquino, “Theatrum Politicum: The Genealogy of Capital—Police and the State of Prosperity,” in The Foucault Effect: Studies in Governmentality, ed. Graham Burchell, Colin Gordon, and Peter Miller (Chicago: University of Chicago Press, 1991), 113.
Foucault, Society Must Be Defended, 241.
Stuart J. Murray, “Thanatopolitics: On the Use of Death for Mobilizing Political Life,” Polygraph: An International Journal of Politics and Culture 18 (2006): 197.
Stuart J. Murray, “Care of the Self: Biotechnology, Reproduction, and the Good Life,” Philosophy, Ethics, and Humanities in Medicine 2, no. 6 (2007), http://www.peh-med.com/content/2/1/6 (accessed November 28, 2014).
For more on “social death,” see Orlando Patterson, Slavery and Social Death: A Comparative Study (Cambridge, Mass.: Harvard University Press, 1982); for a discussion of “premature death,” see Ruth Wilson Gilmore, Golden Gulag: Prisons, Surplus, Crisis, and Opposition in Globalizing California (Berkeley: University of California Press, 2007); and for more on “slow death,” see Lauren Berlant, “Slow Death (Sovereignty, Obesity, Lateral Agency),” Critical Inquiry 33, no. 4 (2007): 754–80.
Also see below, where we further refine how we address death within a life-making power—delineating our approach from other accounts of operations of death in the politics of life.
Foucault, Society Must Be Defended, 256.
Melinda Cooper, Life as Surplus: Biotechnology and Capitalism in the Neoliberal Era (Seattle: University of Washington Press, 2008), 8–11.
While our analysis remains primarily tethered to the national scale, U.S. biocultures are transnational and necessitate further examination from postcolonial perspectives and geographies. This ranges from the outsourcing of clinical trials to the Global South, where bodies bear collateral damage in support of U.S. life-making efforts, to the U.S. reliance on immigrant labor to maintain key areas of the national health care system and various health industries and infrastructure, such as care for the elderly. For examples of scholarship on the former, see Adriana Petryna, When Experiments Travel: Clinical Trials and the Global Search for Human Subjects (Princeton, N.J.: Princeton University Press, 2009); Susan Craddock, “Drug Partnerships and Global Practices,” Journal of Health and Place 18, no. 3 (2012): 481–89; and Kaushik Sunder Rajan, ed., Lively Capital:Biotechnologies, Ethics, and Governance in Global Markets (Durham, N.C.: Duke University Press, 2012).
Note that our methodology predominantly relies on discursive analysis, including that of practices; the book is not an ethnographic account of practitioners.
Throughout this book, we use the terms white and black to denote broad racial oppositions constructed in Western (post)-Enlightenment logic systems rather than distinct categories. Where we do capitalize certain racial or ethnic categories, it is to mark those groups that are differentiated through biomedical and state-based practices (such as the census). And while such categories remain important—in order for groups to make demands on the state/social sphere—they obfuscate the diversity within groups and are also necessarily constructed in historically and geographically specific ways.
Nikolas Rose and Carlos Novas, “Biological Citizenship,” in Global Assemblages: Technology, Politics, and Ethics as Anthropological Problems, ed. Aihwa Ong and Stephen J. Collier (Malden, Mass.: Blackwell, 2005), 439–63. Adriana Petryna first used this term in Life Exposed: Biological Citizens after Chernobyl (Princeton, N.J.: Princeton University Press, 2002).
Paul Rabinow, “Artificiality and Enlightenment: From Sociobiology to Biosociality,” in Essays on the Anthropology of Reason, 91–111 (Princeton, N.J.: Princeton University Press, 1996).
Catherine Waldby, “Stem Cells, Tissue Cultures, and the Production of Biovalue,” Health 6, no. 3 (2002): 310.
Rose, Politics of Life Itself, 32. Also see Carlos Novas and Nikolas Rose, “Genetic Risk and the Birth of the Somatic Individual,” Economy and Society 29, no. 4 (2000): 485–513.
Kaushik Sunder Rajan, Biocapital: The Constitution of Postgenomic Life (Durham, N.C.: Duke University Press, 2006); Melinda Cooper, Life as Surplus. Also see Catherine Waldby and Robert Mitchell, Tissue Economies: Blood, Organs, and Cell Lines in Late Capitalism (Durham, N.C.: Duke University Press, 2006), and Clarke et al., Biomedicalization.
Our biocultural approach draws on the insights and earlier institutional efforts of Lennard J. Davis, who advocated for biocultural literacy across publics to address complex questions of life and death. Bringing together the disciplines of science, technology, medicine, and the humanities, Davis and Project Biocultures at the University of Illinois–Chicago innovatively created a “biocultural studies” platform for issues concerning the body, identity, bio/technology, history, and culture. See Davis, “Life, Death, and Biocultural Literacy,” The Chronicle Review 52, no. 18 (2006), http://www.lennarddavis.com/downloads/lifedeathandbioculture.pdf (accessed May 23, 2019). Notably, Rajshree Chandra also uses the term biocultures in her work on the politics of genetic resources and new biotic properties and rights, The Cunning of Rights: Law, Life, Biocultures (New Delhi: Oxford University Press, 2016). Samantha Frost deploys the term to denote how humans become cultured within the particularities of their material, social, and symbolic worlds in Biocultural Creatures: Toward a New Theory of the Human (Durham, N.C.: Duke University Press, 2016). As noted earlier in this introduction, we use the term to describe the various ways biomedical logics and rationalities extend into broader society (escape biomedical confines) and become incorporated into social practices and individual self-formation and governance. We also utilize biocultures as a methodology.
See, e.g., Esposito, Bios: Biopolitics and Philosophy.
Refer to Giorgio Agamben, Homo Sacer: Sovereign Power and Bare Life (Stanford, Calif.: Stanford University Press, 1998). On death and biopolitics in “societies of control,” see Michael Hardt and Antonio Negri, Empire (Cambridge, Mass.: Harvard University Press, 2000), and Michael Hardt and Antonio Negri, Commonwealth (Cambridge, Mass.: Harvard University Press, 2009).
Achille Mbembe, “Necropolitics,” Public Culture 15, no. 1 (2003): 14. For a wide-ranging investigation of “queer necropolitics” in “everyday death worlds”—an approach that overlaps with that of this volume—refer to the anthology by Jin Haritaworn, Adi Kuntsman, and Silvia Posocco, eds., Queer Necropolitics (New York: Routledge, 2014).
Foucault, History of Sexuality, 136. Stuart Murray has argued that within this form of power, “life must be avowed; death disavowed. Life must be made; death is neither made nor unmade.” Murray, “Thanatopolitics,” 197. This is a relative passivity then. As Berlant has noted, Foucault shifts from a focus on “scenes of control over individual life and death under sovereign regimes and refocuses on the dispersed management of the biological threat posed by certain populations to the reproduction of the normatively framed general good life of a society.” Berlant, “Slow Death,” 756.
Anne Pollock, Medicating Race: Heart Disease and Durable Preoccupations with Difference (Durham, N.C.: Duke University Press, 2012).
Grace Kyungwon Hong, Death Beyond Disavowal: The Impossible Politics of Difference (Minneapolis: University of Minnesota Press, 2015).
Patterson, Slavery and Social Death.
Lisa Marie Cacho, Social Death: Racialized Rightlessness and the Criminalization of the Unprotected (New York: New York University Press, 2012), quote in book summary blurb.
Berlant, “Slow Death,” 764.
Henry A. Giroux, “Reading Hurricane Katrina: Race, Class, and the Biopolitics of Disposability,” College Literature 33, no. 3 (2006): 171–96; Matthew Sparke, “Austerity and the Embodiment of Neoliberalism as Ill-Health: Towards a Theory of Biological Sub-citizenship,” Social Science and Medicine 187 (2017): 287–95; Gilmore, Golden Gulag, 28.
As Chih-Chen Trista Lin, Claudio Minca, and Meghann Ormond have argued, “affirmative biopolitics is broadly understood . . . as a way to theorize how new/different ways of living and forms of life have the potential to transform or resist modes of dominance over, or negation of, life. Thinking in terms of affirmative biopolitics means considering the generative ‘force’ in the so-called ‘politics of life,’ whereby the power of life may be reclaimed from governmental apparatuses.” See Lin et al., “Affirmative Biopolitics: Social and Vocational Education for Quechua Girls in the Postcolonial ‘Affectsphere’ of Cusco, Peru,” Environment and Planning D: Society and Space 36, no. 5 (2018), https://doi.org/10.1177/0263775817753843 (accessed March 26, 2018). For variations on affirmative biopolitics, see Esposito’s work, whose main point of reference for an affirmative biopolitics is bodies that oppose the external domination of life processes, and Rosi Braidotti, The Posthuman (Cambridge: Polity Press, 2013).
For an overview of new materialisms, refer to Diana Coole and Samantha Frost, “Introducing the New Materialisms,” in New Materialisms: Ontology, Agency, and Politics, ed. Diana Coole and Samantha Frost, 1–43 (Durham, N.C.: Duke University Press, 2010). Also refer to Stacy Alaimo’s reflexive contributions to new materialist scholarship, such as her article “Sustainable This, Sustainable That: New Materialisms, Posthumanism, and Unknown Futures,” PMLA 127, no. 3 (2012): 558–64. Also see Eugene Thacker, After Life (Chicago: University of Chicago Press, 2010).
Lee Edelman, No Future: Queer Theory and the Death Drive (Durham, N.C.: Duke University Press, 2004).
Alastair Hunt and Stephanie Youngblood, eds., Against Life (Evanston, Ill.: Northwestern University Press, 2016).
See, e.g., Mary Zournazi, Hope: New Philosophies for Change (Annandale, Australia: Pluto Press, 2002).
See the Convoy of Hope website at http://www.convoyofhope.org/ (accessed November 28, 2014).
Thus we focus here on the governing logics of hope rather than on forms of resistance to such governing. Our interest is to explore how hope is deployed to invite individuals to think about themselves in particular ways and respond to biomedical facts and treatments according to dominant biomedical discourses. This is not to say that there are not myriad ways in which individuals and collectives challenge or reject such forms of governing.
Our use of the term militarized refers to the general process by which hope has been imbued with martial qualities and practiced across a range of scales for the purposes of security, namely, the organization of life—of institutions, knowledge, and social relations—according to the imperatives of national defense or individual survival, including everyday, banal neoliberal processes that naturalize social inequities and seek to contain social conflict by bounding spaces and bodies.
For an instructive overview of the affective turn, refer to Ruth Leys, “The Turn to Affect: A Critique,” Critical Inquiry 37, no. 3 (2011): 434–72. Within contemporary theory, affect is understood in a range of ways: as immanent to the subject, the prediscursive or biologized substrate; as that which escapes reason, rationality, and intention; as nonsignifying, formless intensity or vital energy in excess of the human and the social. For example, Eric Shouse, referring to Brian Massumi’s theory of affect, states that “an affect is a nonconscious experience of intensity; it is a moment of unformed and unstructured potential.” Shouse, “Feeling, Emotion, Affect,” M/C Journal: A Journal of Media and Culture 8, no. 6 (2005), http://journal.media-culture.org.au/0512/03-shouse.php (accessed November 28, 2014). Affect is understood to occur below the threshold of consciousness and cognition, independent of signification and meaning. It is also seen as “proceeding directly from the body—and indeed between bodies—without the interference or limitations of consciousness, or representation: For this reason, its force is, strictly speaking, pre-personal.” Constantina Papoulias and Felicity Callard, “Biology’s Gift: Interrogating the Turn to Affect,” Body and Society 16, no. 1 (2010): 35. Such a prepersonal possibility between bodies (or material intensities) is considered to be the space from which a dynamic politics can emerge: “an essentially dynamic, self-organizing biology/nature is presented as the guarantor for an emancipatory and creative politics” (Papoulias and Callard, 49). In contradistinction to the emphasis on affect’s immanence in much contemporary scholarship, our approach emphasizes the nonimmanent dynamics of affect—its social–relational–material functions.
Clare Hemmings, “Invoking Affect,” Cultural Studies 19, no. 5 (2005): 565, emphasis added.
Mary J. Del Vecchio Good, B. J. Good, C. Schaffer, and S. E. Lind, “American Oncology and the Discourse of Hope,” Culture, Medicine, and Psychiatry 14, no. 1 (1990): 59–79; Sarah Franklin, Embodied Progress: A Cultural Account of Assisted Conception (Abingdon, U.K.: Routledge, 1997); Tiago Moreira and Paolo Palladino, “Between Truth and Hope: On Parkinson’s Disease, Neurotransplantation and the Production of the ‘Self,’” History of the Human Sciences 18, no. 3 (2005): 55–82; Carlos Novas, “The Political Economy of Hope: Patients’ Organizations, Science and Biovalue,” BioSocieties 1, no. 3 (2006): 289–305. On Nik Brown’s work, see “Ordering Hope: Representations of Xenotransplantation—An Actant/Actor Network Theory Account” (PhD diss., Lancaster University, 1998); “Hope against Hype: Accountability in Biopasts, Presents and Futures,” Science Studies 16, no. 2 (2003): 3–21; “Shifting Tenses: Reconnecting Regimes of Truth and Hope,” Configurations 13, no. 3 (2005): 331–55; and “Shifting Tenses—From ‘Regimes of Truth’ to ‘Regimes of Hope,’” SATSU Working Paper 30 (2006), http://www.york.ac.uk/media/satsu/documents-papers/Brown-2006-shifting.pdf. See also Cheryl Mattingly’s work on hope as a narrative phenomenology of practice for families with critically ill children in The Paradox of Hope: Journeys through a Clinical Borderland (Berkeley: University of California Press, 2010).
We use the term truth here in the Foucauldian sense, to refer to a regime comprising types of discourse that an individual society “accepts and makes function as true.” See Michel Foucault, “Truth and Power,” in Power/Knowledge: Selected Interviews and Other Writings, 1972–1977, ed. Colin Gordon, trans. Colin Gordon, Leo Marshall, John Mepham, and Kate Soper, 109–33 (New York: Pantheon Books, 1980), esp. 131.
Nikolas Rose, The Politics of Life Itself: Biomedicine, Power, and Subjectivity in the Twenty-First Century (Princeton, N.J.: Princeton University Press, 2007); Adele E. Clarke, Laura Mamo, Jennifer Ruth Fosket, Jennifer R. Fishman, and Janet K. Shim, eds., Biomedicalization: Technoscience, Health, and Illness in the U.S. (Durham, N.C.: Duke University Press, 2010).
Susan Sontag, Illness as Metaphor and AIDS and Its Metaphors (New York: Picador, 1989).
Robert N. Proctor, Cancer Wars: How Politics Shapes What We Know and Don’t Know about Cancer (New York: Basic Books, 1996).
The beginnings of the modern era of cancer chemotherapy can be directly traced to the development and application of chemical warfare during World War I. For more on the linkages between the military–industrial complex and cancer control and treatment, refer to Bruce A. Chabner and Thomas G. Roberts, “Chemotherapy and the War on Cancer,” Nature Reviews Cancer 5 (January 2005): 65–72; Sarah Hazell, “Mustard Gas—From the Great War to Frontline Chemotherapy,” Cancer Research UK “Science” (blog), August 27, 2014, http://scienceblog.cancerresearchuk.org/2014/08/27/mustard-gas-from-the-great-war-to-frontline-chemotherapy/ (accessed July 21, 2016); John E. Fenn and Robert Udelsman, “First Use of Intravenous Chemotherapy Cancer Treatment: Rectifying the Record,” Journal of the American College of Surgeons 212, no. 3 (2011): 413–17, http://www.journalacs.org/article/S1072-7515(10)01211-1/ (accessed July 21, 2016); “War Gases Tried in Cancer Therapy: Army Branch Joins Research Groups in Study of Using Nitrogen Blister Chemicals,” New York Times, October 6, 1946, https://www.nytimes.com/1946/10/06/archives/war-gases-tried-in-cancer-therapy-army-branch-joins-research-groups.html (accessed July 21, 2016); Novogen, “The Future of Cancer Therapy,” January 2015, http://www.novogen.com/pdf/cytotoxiChemotherapy.pdf (accessed July 21, 2016).
For Nikolas Rose, biocitizenship marks “all those citizenship projects that have linked their conceptions of citizens to beliefs about the biological existence of human beings, as individuals, as men and women, as families and lineages, as communities, as populations and race, and as species.” Rose, Politics of Life Itself, 132. What we go on to show, however, is that biocitizenship does not always take nationalized form. Indeed, as Rose has argued, in the contemporary era, it involves medical knowledge of one’s “condition,” a sense of belonging with others who share that condition, and a heightened sense of responsibility for one’s own health, enabled through advancements in the biomedical sphere and technoscience.
Barron H. Lerner, The Breast Cancer Wars: Hope, Fear, and the Pursuit of a Cure in Twentieth-Century America (New York: Oxford University Press, 2003).
An array of pins and buttons depicting the sword were utilized by the WFA and supporters to mark their membership and commitment to the cause. See Lerner, 43–44.
Quoted in Lerner, 43.
Many of these posters highlight how the ACS addressed the personal, specifically the family, as the realm where cancer awareness and vigilance needed to be cultivated. Through personal responsibility, cancer could be detected and attacked. Cancer is framed here as that which could be met with retaliatory action.
Under neoliberal biopolitics, we have witnessed a declining welfare imperative and the increasing absence of the idea of society or of a collective social good, a heightened individualizing of the administration and management of life, and a reworking of life beyond its perceived limits. See Melinda Cooper, Life as Surplus: Biotechnology and Capitalism in the Neoliberal Era (Seattle: University of Washington Press, 2008), 8. Neoliberal biopolitics, as we outline in the introduction to this volume, refers to a range of social, political, and economic rationalities, programs, directives, and policies that work across multiple scales—local, regional, national, global.
For a comprehensive account of breast cancer activism and politics, see Nadine Ehlers and Shiloh Krupar, eds., “The Body in Breast Cancer,” special issue of Social Semiotics 22, no. 1 (2012); Nadine Ehlers, “Risking Safety: Breast Cancer, Prognosis, and the Strategic Enterprise of Life,” Journal of Medical Humanities 37, no. 1 (2016): 81–94; and Barbara Ehrenreich, “Welcome to Cancerland: A Mammogram Leads to a Cult of Pink Kitsch,” Harper’s, November 2001, 43–53.
Ehrenreich, “Welcome to Cancerland.” David Cantor states that “a new ‘biomedical complex’ emerged around cancer, characterized by new relationships between the biological sciences, clinical medicine, the pharmaceutical industry, and the federal government as a major supporter of research, as well as by a vast increase in the scale of investment, the numbers of research institutions, and the size of the scientific and medical communities, and all increasingly entangled in emergent Cold War Politics.” Refer to Cantor, “Introduction: Cancer Control and Prevention in the Twentieth Century,” Bulletin of the History of Medicine 81 (2007): 14–15.
See, e.g., Samantha King, Pink Ribbons Inc.: Breast Cancer and the Politics of Philanthropy (Minneapolis: University of Minnesota Press, 2008). Also refer to Maren Klawiter, The Biopolitics of Breast Cancer: Changing Cultures of Disease and Activism (Minneapolis: University of Minnesota Press, 2008), 135–46.
This information was available at “Open Letter Concerning the Susan G. Komen Foundation,” http://www.discountgunsales.com/SGKF.pdf (accessed November 28, 2014). All reference to the gun has since been removed from the Discount Gun Sales website; however, an archived version of the letter is at http://big.assets.huffingtonpost.com/SGKF.pdf (accessed November 28, 2014).
The figure of the pink warrior most often incites white heterosexual women to do this work, because of the technologies/conventions of white heterosexual femininity on which it draws. See Shiloh R. Krupar, “The Biopsic Adventures of Mammary Glam: Breast Cancer Detection and the Promise of Cancer Glamor,” Social Semiotics 21, no. 5 (2012): 47–82.
Krupar, 65; also see Nadine Ehlers and Shiloh Krupar, “Introduction: The Body in Breast Cancer,” Social Semiotics 21, no. 5 (2012): 1–11.
See Clarke et al., Biomedicalization.
F. M. Hodges, J. S. Svoboda, and R. S. Van Howe, “Prophylactic Interventions on Children: Balancing Human Rights with Public Health,” Journal of Medical Ethics 28, no. 1 (2002): 10–16, esp. 11.
Michel Foucault, “Two Lectures,” in Power/Knowledge: Selected Interviews and Other Writings, 1972–1977, ed. Colin Gordon, trans. Colin Gordon, Leo Marshall, John Mepham, and Kate Soper (New York: Pantheon Books, 1980), 98.
In this operation, groups of individuals are claiming “belonging” to a particular disease or biological classification, representing what Paul Rabinow has called “biosociality”; see Rabinow, “Artificiality and Enlightenment: From Sociobiology to Biosociality,” in Incorporations, ed. Jonathan Crary and Sanford Kwinter, 234–52 (New York: Zone Books, 1992).
See the Hope Band Online Store website, http://cancerhopebands.com/store/index.php?main_page=down_for_maintenance&zenid=7f232407048ee6d67b299217d97be96c (accessed June 28, 2012).
See the SeedBallz “Seeds of Hope” product, https://seedballz.com/products/seeds-of-hope-1 (accessed April 28, 2019).
Give Hope is an initiative of The Swedish Childhood Cancer Foundation that raises funds to fight against childhood cancer. See http://swedesres.typepad.com/blog/2008/11/give-hope.html (accessed June 28, 2012).
Refer to the Miles of Hope Breast Cancer Foundation’s website, https://milesofhope.org/hoops-for-hope-march-16-register-now/ (accessed April 28, 2019).
See the Athletes for Cancer website, http://tenacitygames.com/art/ (accessed June 28, 2012).
Refer to the Think Before You Pink website, http://thinkbeforeyoupink.org/ (accessed June 28, 2012).
See https://hyundaihopeonwheels.org/ (accessed April 28, 2019).
See the Susan G. Komen website, http://apps.komen.org/raceforthecure/ (accessed June 28, 2012).
Ehrenreich, “Welcome to Cancerland,” 51.
Amy Lubitow and Mia Davis, “Pastel Injustice: The Corporate Use of Pinkwashing for Profit,” Environmental Justice 4, no. 2 (2011): 142.
See Peggy Orenstein, “Our Feelgood War on Breast Cancer,” New York Times, April 25, 2013, http://www.nytimes.com/2013/04/28/magazine/our-feel-good-war-on-breast-cancer.html. On the deadly effects of chemotherapy, see the recent study results published in The Lancet: Michael Wallington, Emma B. Saxon, Martine Bomb, Rebecca Smittenaar, Matthew Wickenden, Sean McPhail, Jem Rashbass, David Chao, John Dewar, Denis Talbot, Michael Peake, Timothy Perren, Charles Wilson, and David Dodwell, “30-day Mortality after Systemic Anticancer Treatment for Breast and Lung Cancer in England: A Population-Based, Observational Study,” Lancet Oncology 17 (2016): 1203–16, http://www.thelancet.com/pdfs/journals/lanonc/PIIS1470-2045(16)30383-7.pdf. For earlier U.S.-based findings, see “Chemotherapy Contributes to a Quarter of Cancer Deaths: Study,” http://www.abc.net.au/news/2008-11-13/chemotherapy-contributes-to-a-quarter-of-cancer/204358 (accessed February 26, 2018).
See the Avon Walk website, https://www.avon.com/category/causes/avon-walk (accessed June 28, 2012).
Ehrenreich, “Welcome to Cancerland,” 52.
Dorothy Broom, “Reading Breast Cancer: Reflections on a Dangerous Intersection,” Health 5, no. 2 (2001): 254.
Quoted in Pamela Grossman, “Metastatic Women Are Stranded in a Sea of Pink,” Women’s E-news, November 27, 2012, http://womensenews.org/story/health/121126/metastatic-women-are-stranded-in-the-sea-pink#.UfslyY4kfgR (accessed August 1, 2013).
Lauren Berlant, Cruel Optimism (Durham, N.C.: Duke University Press, 2011).
See the Mission Hope Cancer Center website, http://www.missionhopecancercenter.com/index.html (accessed November 28, 2014).
“UAMS Expands Cancer Treatment and Research Facilities,” http://www.magnoliareporter.com/news_and_business/regional_news/article_d58c680a-9c30-11df-8230-001cc4c03286.html (accessed November 28, 2014).
See the UAMS Winthrop P. Rockefeller Cancer Institute website, http://www.seed-of-hope.com/ (accessed November 28, 2014).
UAMS Winthrop P. Rockefeller Cancer Institute, “About the Seed of Hope,” https://cancer.uams.edu/patient-stories/about-the-seeds-of-hope/ (accessed April 28, 2019).
Refer to http://www.seed-of-hope.com/about-the-seeds-of-hope/ (accessed November 28, 2014).
See the ACS’s Hope Lodge website, https://www.cancer.org/treatment/support-programs-and-services/patient-lodging/hope-lodge.html (accessed April 28, 2019).
“American Cancer Society Raises $22 Million for Hope Lodge Boston Construction,” http://www.cancer.org/myacs/NewEngland/AreaHighlights/american-cancer-society-raises-22-million-for-hope-lodge-boston-construction (accessed November 28, 2014). There is also an AstraZeneca Hope Lodge of the American Cancer Society located in the Philadelphia region.
On “greenwashing,” see Cindi Katz, “Whose Nature, Whose Culture? Private Productions of Space and the ‘Preservation’ of Nature,” in Remaking Reality: Nature at the Millennium, ed. Bruce Braun and Noel Castree, 45–62 (London: Routledge, 1998), and Shiloh R. Krupar, Hot Spotter’s Report: Military Fables of Toxic Waste (Minneapolis: University of Minnesota Press, 2013).
Other scholars refer to this as the “U.S. Biomedical TechnoService Complex Inc.”; see Clarke et al., Biomedicalization.
Del Vecchio Good et al., “American Oncology and the Discourse of Hope.”
Eric Kadish and Stephen G. Post, “Oncology and Hope,” Journal of Clinical Oncology 13, no. 7 (1995): 1817.
Brown, “Shifting Tenses: Reconnecting Regimes of Truth and Hope,” 338; see also Kadish and Post, “Oncology and Hope,” 1818.
Del Vecchio Good et al., “American Oncology and the Discourse of Hope,” 75.
Del Vecchio Good et al.
Brown, “Shifting Tenses–From ‘Regimes of Truth’ to ‘Regimes of Hope,’” 12.
R. Tate, J. Haritatos, and S. Cole, “HopeLab’s Approach to Re-Mission,” International Journal of Learning and Media 1, no. 1 (2009): 29. See also HopeLab’s website, http://www.hopelab.org/ (accessed February 26, 2018).
The game’s advertising declares that “an epic battle rages deep in the realms of the human body. Colonies of microscopic cancer cells are replicating, attacking, and damaging healthy organs of young people from all across the United States. Enter Roxxi, your courageous and fully-armed nanobot and medicine’s mightiest warrior.” See http://www.hopelab.org/innovative-solutions/re-missionTM/ (accessed November 28, 2014).
“Re-Mission 2 Video Game Now in Development,” http://www.nanopaprika.eu/profiles/blogs/remission-2-video-game-now-in (accessed November 28, 2014).
Kate Metropolis, “Steve Cole,” Health Games Research, http://www.healthgamesresearch.org/our-publications/featured-colleagues/steve-cole (accessed November 28, 2014).
See Onoyemi Benedict, “Medicine’s Neglected Spirit: The Positive Therapeutic Effect of Spirituality,” on the CTCA’s Our Journey of Hope website, https://www.ourjourneyofhope.com/general-resources?res=35106 (accessed April 28, 2019).
The phrase “mother standard of care” seems to imply the ultimate standard of care that, rather than being simply custodial, is representative of love.
See, e.g., Robert L. Dupont, “The Healing Power of Faith: Science Explores Medicine’s Last Great Frontier,” on the CTCA’s Our Journey of Hope website, http://www.ourjourneyofhope.com/resources/articles (accessed November 28, 2014). DuPont’s review of Harold G. Koenig’s book The Healing Power of Faith: Science Explores Medicine’s Last Great Frontier (New York: Simon and Schuster, 1999) originally appears in The American Journal of Psychiatry, August 1, 2001, https://ajp.psychiatryonline.org/doi/full/10.1176/appi.ajp.158.8.1347.
The CTCA’s Our Journey of Hope website, “Don’t Waste Your Cancer,” February 15, 2006, http://ojoh.hopenavigators.com/resources/articles/don-t-waste-your-cancer (accessed November 28, 2014). Excerpts were originally written by John Piper and can now be found in his book Don’t Waste Your Cancer (Wheaton, Ill.: Crossway, 2011).
The CTCA’s Our Journey of Hope website, “Atheist Doctors More Likely to Hasten Death: Survey Finds Religious Beliefs Could Affect Care of Terminally Ill Patients,” http://www.ourjourneyofhope.com/resources/articles/atheist-doctors-more-likely-to-hasten-death (accessed November 28, 2014). The original article is by Maria Cheng, “Atheist Doctors More Likely to Hasten Death,” NBCNews.com, August 26, 2010, http://www.nbcnews.com/id/38866495/ns/health-health_care/t/atheist-doctors-more-likely-hasten-death/.
See, e.g., Elizabeth Ward, Ahmedin Jemal, Vilma Cokkinides, Gopal K. Singh, Cheryll Cardinez, Asma Ghafoor, and Michael Thun, “Cancer Disparities by Race/Ethnicity and Socioeconomic Status,” CA: A Cancer Journal for Clinicians 54, no. 2 (2004): 78–93; Nadine Ehlers, “Breast Cancer,” in Gender: Matter, ed. Stacy Alaimo, 281–95 (Farmington Hills, Mich.: Macmillan Reference, 2017).
National Institutes of Health, National Cancer Institute, “Cancer Health Disparities,” http://www.cancer.gov/about-nci/organization/crchd/cancer-health-disparities-fact-sheet (accessed July 20, 2016).
National Institutes of Health.
National Institutes of Health.
Designed to increase access to health insurance and high-quality care for U.S. residents, the ACA’s implementation was expected to result in a decrease of 26 million uninsured by 2017. ACA proponents envisioned that greater access to care and insurance would increase the availability and utilization of preventive and treatment services, with the goal of improving health outcomes and reducing health disparities that disproportionately impact minority populations. Refer to Eileen B. O’Keefe, Jeremy P. Meltzer, and Traci N. Bethea, “Health Disparities and Cancer: Racial Disparities in Cancer Mortality in the United States, 2000–2010,” Frontiers in Public Health 3, no. 51 (2015), http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4398881 (accessed July 20, 2016). At the time of our writing this chapter (2018), the ACA remains under attack by the Trump administration, and it’s unclear what effects the ACA will have on cancer outcomes and disparities.
African Americans incur substantial medical debt compared with whites, due to health status, income, and insurance disparities. Refer to Nadine Ehlers and Leslie R. Hinkson, eds., Subprime Health: Debt, Race, and U.S. Medicine (Minneapolis: University of Minnesota Press, 2017); Jacqueline C. Wiltshire, Keith Elder, Catarina Kiefe, and Jeroan J. Allison, “Medical Debt and Related Financial Consequences among Older African American Adults,” American Journal of Public Health 106, no. 6 (2016): 1086–91, http://www.ncbi.nlm.nih.gov/pubmed/27077346 (accessed July 20, 2016). Moreover, “women are more likely than men to forgo, delay, and ration medical care because of medical debt”; see Jacqueline C. Wiltshire, Tyra Dark, R. L. Brown, and Sharina D. Person, “Gender Differences in Financial Hardships of Medical Debt,” Journal of Health Care for the Poor and Underserved 22, no. 1 (2011): 371, http://www.ncbi.nlm.nih.gov/pubmed/21317529 (accessed July 20, 2016). For a study of medical debt in relation to poverty, health disparities, and the racial divide in homeownership, refer to Bronwen Lichtenstein and Joe Weber, “Losing Ground: Racial Disparities in Medical Debt and Home Foreclosure in the Deep South,” Family and Community Health 39, no. 3 (2016): 178–87, http://journals.lww.com/familyandcommunityhealth/Abstract/2016/07000/Losing_Ground__Racial_Disparities_in_Medical_Debt.6.aspx (accessed July 20, 2016).
S. Lochlann Jain, “Survival Odds: Mortality in Corporate Time,” Current Anthropology 52, no. 3 (2011): 46. Also refer to Jain’s extensive cultural analysis and criticism of cancer biocultures in S. Lochlann Jain, Malignant: How Cancer Becomes Us (Berkeley: University of California Press, 2013).
“The Beautiful and Bald Movement: Decorating Domes with Love and Happiness,” http://www.beautifulandbald.com/ (accessed November 28, 2014).
See “Bald Barbie Campaign Convinces Mattel to Produce New Doll,” https://www.redorbit.com/news/health/1112505299/bald-barbie-campaign-convinces-mattel-to-produce-new-doll/ (accessed April 28, 2019). Also see the “Bald and Beautiful Barbie” Facebook page (last accessed July 11, 2016).
Mattel produced a one-off version of the “Hope” Barbie for four-year-old cancer patient Genesis Reyes in early 2011. The company later announced that it would create a bald friend of the Barbie doll for hospital-only circulation. See “Mattel to Make ‘Bald Friend of Barbie,’” http://abcnews.go.com/blogs/health/2012/03/29/mattel-to-produce-bald-friend-of-barbie/ (accessed November 28, 2014). “Ella,” friend of Barbie, was introduced by Mattel in late 2012 with very limited distribution. A second line was created in 2014. Ella, however, does not reflect the glam possibilities of bald Barbie, and, with her two optional wigs, does more to conform to dominant norms of femininity. See “Mattel Agrees to Produce More Bald Barbie ‘Ella’ Dolls for Little Kids with Cancer,” http://www.huffingtonpost.com.au/entry/mattel-to-continue-bald-ella-doll_n_5548672 (accessed July 11, 2016). On “makeover culture” in relation to cancer, see Shelley Cobb and Susan Starr, “Breast Cancer, Breast Surgery, and the Makeover Metaphor,” Social Semiotics 22, no. 1 (2012): 83–101; on “glam” as a response to cancer makeover culture, see Krupar, “Biopsic Adventures of Mammary Glam.”
The original blog post, “Bald Barbie Is an Over-Reach,” has been removed from the ACS website. However, a copy of the Becker post is available at the Jack Morton Foundation website, http://thejackmortonfoundation.org/tuesday-january-17-2012/ (accessed November 28, 2014). Becker later apologized for his post in “Bald Barbie Demand Is an Over-Reach–UPDATED,” http://acspressroom.wordpress.com/2012/01/13/bald-barbie-demand-is-an-over-reach/ (accessed November 28, 2014).
See HCM’s website, http://www.hopecancer.org/ (accessed November 28, 2014).
Jain, “Survival Odds,” 46.
See “About The Tutu Project,” http://www.thetutuproject.com/about/#.UBXnDI5rr6E (accessed November 28, 2014).
Krupar, Hot Spotter’s Report, 251–69.
Michel Foucault, “Questions of Method,” in The Foucault Effect: Studies in Governmentality, ed. Graham Burchell, Colin Gordon, and Peter Miller (Chicago: University of Chicago Press, 1991), 84. Foucault also states that “I would therefore propose, as a very first definition of critique, this general characterization: the art of not being governed quite so much.” See Foucault, “What Is Critique?,” in The Politics of Truth, ed. Sylvère Lotringer, trans. Lysa Hochroth and Catherine Porter (Los Angeles, Calif.: Semiotext(e), 1997), 45.
Foucault, “What Is Critique?,” 45.
W. E. B. Du Bois, The Philadelphia Negro: A Social Study (New York: Lippincott, 1899), http://media.pfeiffer.edu/lridener/dss/DuBois/pntoc.html (accessed June 10, 2013).
On biological citizenship, see Nikolas Rose, The Politics of Life: Biomedicine, Power, and Subjectivity in the Twenty-First Century (Princeton, N.J.: Princeton University Press, 2007), 24–25.
Michel Foucault, Society Must Be Defended: Lectures at the Collège de France 1975–1976, ed. Mauro Bertani and Alessandro Fontana, trans. David Macey (New York: Picador, 2003), 255; Rose, Politics of Life, 24–25. According to Foucault, the fostering of life is fragmented by race or, we could say, racism has been used as a functional mechanism to control the population en masse.
Michael Dillon and Andrew W. Neal, Foucault on Politics, Security and War (Hampshire, U.K.: Palgrave Macmillan, 2008), 168.
This is a modality of governing that administers (in this case) black life via attention to health. Such administration, as Du Bois makes clear and as we go on to show, is not necessarily affirmative.
This form of governing began almost immediately after the formal end of slavery. For instance, the Freedman’s Bureau and early postslavery law are familiar examples of how black “freedom” was built on constraint. As Katherine Franke has argued, “the containment of African-American liberty within a ‘space of regulated freedom’ became one of the principal techniques used by the U.S. government to create particularly governable subjects.” See Franke, “Not Quite White,” http://www.law.columbia.edu/faculty/faculty_writing/facpubs/franke (accessed May 26, 2013). Such governing continues in multiple ways, from the relentless incarceration of black bodies to the racialization of space to the focus of this chapter—inequitable and endangering forms of biomedical administration.
Du Bois, The Philadelphia Negro,http://media.pfeiffer.edu/lridener/dss/DuBois/pntoc.html. Du Bois explicitly names these social problems as “poverty, ignorance, crime and labor.”
The irony, here, is that race consciousness within the medical arena is taking place in the very same moment that we see a concerted move toward so-called color-blindness in the broader social sphere. See, e.g., the move away from affirmative action evidenced in the 2007 U.S. Supreme Court case Parents Involved in Community Schools v. Seattle School District No. 1, where the Court ruled that it was unconstitutional for school districts to use individualized racial classifications to achieve diversity and/or avoid racial isolation through student assignment.
This view is at odds with Rose, who argues that racialized biomedicine is organized around the fostering of life. Refer to Rose, Politics of Life, 167.
Such knowledge (and practice) is often referred to as anti-blackness. Anti-blackness does not “simply name various forms of violence experienced by Blacks, but the violence that positions sentient beings outside the realm of the Human.” James Bliss, “Hope against Hope: Queer Negativity, Black Feminist Theorizing, and Reproduction without Futurity,” Mosaic: A Journal for the Interdisciplinary Study of Literature 48 (2015): 89. Frank B. Wilderson specifically considers “the meaning of Blackness not—in the first instance—as a variously and unconsciously interpellated identity or as a conscious social actor [animated by legible political interests], but as a structural position of non-communicability in the face of all other positions.” Wilderson, Red, White and Black: Cinema and the Structure of U.S. Antagonisms (Durham, N.C.: Duke University Press, 2010), 58, emphasis added.
Lindon Barrett, Racial Blackness and the Discontinuity of Western Modernity, ed. Justin A. Joyce, Dwight A. McBride, and John Carlos Rowe (Urbana: University of Illinois Press, 2014).
Alexander G. Weheliye, Habeas Viscus: Racializing Assemblages, Biopolitics, and Black Feminist Theories of the Human (Durham, N.C.: Duke University Press, 2014), 19.
Within the violent dehumanizing system of U.S. chattel slavery, the black body was medically cared for only as nonhuman property. One example of this can be seen in the experiments of J. Marion Sims, known as the “father of gynecology,” who sought to repair the vaginal fistulas of slave women, largely so that their bodies would still be profitable for white owners—in terms of reproductive and other forms of labor. During slavery and beyond, the black body was not only excluded but also called on to service whiteness, that is, to help foster white life. For instance, the practice of grave robbing supported medical experimentation to improve white health—not to support black lives. In fact, through this operation, the bodies of slaves and free blacks were often viewed as worth more dead than alive. Postslavery, the medical arena has been a site in which black subjects have been repeatedly harmed rather than healed. We see this most clearly with the Tuskegee Syphilis Experiments (spanning from 1932 to 1972), which studied the progression of untreated syphilis in African American men who thought they were receiving free health care from the U.S. government; in the appropriation of the Henrietta Lacks cell line (HeLa) to study cancer in the 1950s; and in the disproportionate number of black men diagnosed with schizophrenia in the 1960s due in large part to their connection with civil rights protest activities. De jure and de facto segregation of hospitals, limited access to preventative health care and health insurance, and higher disease burden borne by blacks, among many other examples, show that the biomedical sphere has failed to attend to African American life. Beyond the realm of medicine, black citizens have been subjected to dispossession and abandonment through the dismantling of the social wage (via the destruction of social welfare), through the increasing incarceration of black individuals, and through various practices (such as attacks on public education and affirmative action) that lead or contribute to patterns of cumulative disadvantage. They have also been subjected to various forms of environmental racism—literally existing in what Rinaldo Walcott has called “zones of black death”—in that minority neighborhoods are besieged by hazardous waste sites, industrial pollution, and lead exposure, which in turn creates exponential health risks for poor black populations. See Walcott, “Zones of Black Death: Institutions, Knowledges, and States of Being,” 2014 Antipode AAG Lecture, http://antipodefoundation.org/2014/04/02/the-2014-antipode-aag-lecture/ (accessed August 12, 2014); Harriet A. Washington, Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present (New York: Anchor, 2008). Also see Troy Duster, Backdoor to Eugenics (New York: Routledge, 2003); Alondra Nelson, Body and Soul: The Black Panther Party and the Fight against Medical Discrimination (Minneapolis: University of Minnesota Press, 2011); Dorothy Roberts, Fatal Invention: How Science, Politics, and Big Business Re-create Race in the Twenty-First Century (New York: New Press, 2012); and Michelle van Ryn and Steven S. Fu, “Paved with Good Intentions: Do Public Health and Human Service Providers Contribute to Racial/Ethnic Disparities in Health?,” American Journal of Public Health 93, no. 2 (2003): 248–55. For reports on racial health disparities, refer to Institute of Medicine Report, Unequal Treatment: Confronting Racial and Ethnic Disparities in Healthcare, 2002, http://www.iom.edu/Reports/2002/Unequal-Treatment-Confronting-Racial-and-Ethnic-Disparities-in-Health-Care.aspx (accessed May 20, 2012), and the American Medical Association’s report Health Disparities,http://www.ama-assn.org/resources/doc/mss/ph_disparities_pres.pdf (accessed May 20, 2012).
Du Bois, The Philadelphia Negro. Henry A. Giroux refers to this as the “biopolitics of disposability,” wherein entire populations are marginalized by race and are socially and environmentally excluded from the attainment of health. Refer to Henry A. Giroux, “Reading Hurricane Katrina: Race, Class, and the Biopolitics of Disposability,” College Literature 33, no. 3 (2006): 171.
Ruth Wilson Gilmore, “Fatal Couplings of Power and Difference: Notes on Racism and Geography,” Professional Geographer 54, no. 1 (2002): 15–24.
See José Esteban Muñoz, “Feeling Brown: Ethnicity and Affect in Ricardo Bracho’s The Sweetest Hangover (and Other STDs),” Theatre Journal 52, no. 1 (2000): 67–79. Here Muñoz argues that we occupy an anti-black and anti-brown normative world and stresses that multiple processes “[block] the Latina/o citizen-subject’s trajectory to ‘official’ citizen-subject political ontology” (68). Unequal access to health is clearly one of these processes, as are the various other forms of medical apartheid to which Latinx are subject. Also see Muñoz, “‘Chico, What Does It Feel Like to Be a Problem?’: The Transmission of Brownness,” in A Companion to Latino Studies, ed. Juan Flores and Renato Rosaldo, 441–451 (Oxford: Blackwell, 2007).
David Theo Goldberg, “Racisms without Racism,” PMLA 123, no. 5 (2008): 1712–16.
See Adele E. Clarke, Janet K. Shim, Laura Mamo, Jennifer Ruth Fosket, and Jennifer R. Fishman, “Biomedicalization: Technoscientific Transformations of Health, Illness, and U.S. Biomedicine,” American Sociological Review 68, no. 2 (2003): 181–82.
Edward J. O’Boyle, “Delivering Health Care in a Financially Broken System,” Personally Speaking, no. 32 (2007), http://www.mayoresearch.org/files/FINANCIALIZATION32.pdf (accessed May 25, 2013).
Stephanie Saul, “FDA Approves a Heart Drug for African-Americans,” New York Times, June 24, 2005, http://www.nytimes.com/2005/06/24/health/24drugs.html (accessed May 26, 2013).
It is important to note here that BiDil is not a pharmacogenomic drug. While both the application for the drug’s patent and subsequent marketing stressed biological causes for the drug’s effectiveness in African Americans, the various clinical studies never tested genes. Instead, as the FDA advisory committee chair Steven E. Nissen stated, “we’re using self-identified race as a surrogate for genetic markers.” Cited in Roberts, Fatal Invention, 178. Race, then, was used as a proxy for (supposed) genetic difference.
See the Nitromed BiDil homepage, http://www.nitromed.com/pnt/about_bidil.php (accessed May 26, 2013).
Jonathon Kahn, “How a Drug Becomes ‘Ethnic’: Law, Commerce, and the Production of Racial Categories in Medicine,” Yale Journal of Health Policy, Law, and Ethics 4, no. 1 (2004): Article 1, 11, http://digitalcommons.law.yale.edu/yjhple/vol4/iss1/1 (accessed May 26, 2013).
The A-HeFT trial ended early because of the strengths of its results: morbidity was decreased by 43 percent using BiDil, and hospitalization was decreased by 39 percent. It is important to stress here that the trial only enrolled black patients (a total of 1,050 self-identified black patients with class III or IV heart failure). See H. A. Taylor Jr., J. G. Wilson, D. W. Jones, D. F. Sarpong, A. Srinivasan, R. J. Garrison, C. Nelson, and S. B. Wyatt, “Toward Resolution of Cardiovascular Health Disparities in African Americans: Design and Methods of the Jackson Heart Study,” Ethnicity and Disease 15, no. S6 (2005): 4–17. Also see the BiDil packaging label (of 2005), http://www.accessdata.fda.gov/drugsatfda_docs/label/2005/020727lbl.pdf (accessed May 26, 2013).
Jonathon Kahn, Race in a Bottle: The Story of BiDil and Racialized Medicine in a Post-genomic Age (New York: Columbia University Press, 2012).
George T. H. Ellison, Jay S. Kaufman, Rosemary F. Head, Paul A. Martin, and Jonathon D. Kahn, “Flaws in the U.S. Food and Drug Administration’s Rationale for Supporting the Development and Approval of BiDil as a Treatment for Heart Failure Only in Black Patients,” Journal of Law, Medicine, and Ethics 36, no. 3 (2008): 449.
Jonathon Kahn, “Patenting Race in a Genomic Age,” in Revisiting Race in a Genomic Age, ed. Barbara A. Koenig, Sandra Soo-Jin Lee, and Sarah S. Richardson (New Brunswick, N.J.: Rutgers University Press, 2008), 135.
Roberts argues that “by approving BiDil, only for use in black patients, the FDA emphasized the supposedly distinct—and, it is implied, substandard—quality of black bodies.” Roberts, Fatal Invention, 176.
See, e.g., Susan M. Reverby, “‘Special Treatment’: BiDil, Tuskegee, and the Logic of Race,” Journal of Law, Ethics, and Medicine 36, no. 3 (2008): 478–84. She argues, “The evidence appeared to make congestive heart failure seem almost a ‘different disease’ in ‘self-identified’ African Americans at the level of population, as ‘self-identified’ race became the surrogate marker for some other interactive but unknown, biological and environmental process” (480).
The FDA approval did link BiDil to genes by highlighting pharmacogenomic information regarding the biomarkers NAT1 and NAT2 for the clinical pharmacology of BiDil, and a substudy of AHeFT—called the Genetic Risk Assessment in Heart Failure (GRAHF) study—also tested the incidence of genotypes related to heart failure. U.S. Department of Health and Human Services, “Isosorbide and Hydralazine,” http://www.fda.gov/Drugs/ScienceResearch/ResearchAreas/Pharmacogenetics/ucm236797.htm. As such, there were attempts to link the supposed racial efficacy of BiDil to genetics. Refer to Jonathan Xavier Inda, Racial Prescriptions: Pharmaceuticals, Difference, and the Politics of Life (Surrey, U.K.: Ashgate, 2014), 62–63. Importantly, however, the latest drug label available for BiDil (2005) does not specifically mention genetic or biomarker testing. http://www.accessdata.fda.gov/drugsatfda_docs/label/2005/020727lbl.pdf.
It is widely accepted that there are no racial genes, no clear genomic divide between any of society’s socially constructed racial categories, and no stable cluster of biomedically relevant genes that is essentially linked with ancestry or skin color.
Troy Duster, “Medicine and People of Color: Unlikely Mix—Race, Biology, and Drugs,” San Francisco Chronicle, March 17, 2003, B7.
Pamela Sankar and Jonathon Kahn, “BiDil: Race Medicine or Race Marketing,” Health Affairs 24 (2005): 457.
Inda, Racial Prescriptions, 77.
For example, in 2004, the fifth annual Multicultural Pharmaceutical Marketing and PR Conference noted, “Major U.S. drug manufacturers are making it a high priority to cultivate relationships with ethnic consumers, physician groups, community networks and other key stakeholder groups to uncover new market growth. . . . Disproportionately high incidence rates of diabetes, obesity, heart disease, cancer, HIV/AIDS, asthma and other health conditions among these segments require many strategic and tactical moves in pharmaceutical marketing and PR.” Quoted in Kahn, “How a Drug Becomes ‘Ethnic,’” 25, emphasis added.
Saul, “FDA Approves a Heart Drug for African-Americans.” According to the 2009 Securities and Exchange Commission 10K report filed by NitroMed, the company’s sales from BiDil were considerably lower than expected: “$12.1, $15.3, and $14.9 million in 2006, 2007, and 2008, respectively.” See Sheldon Krimsky, “The Art of Medicine: The Short Life of a Race Drug,” The Lancet 379 (2012): 114–15, http://www.councilforresponsiblegenetics.org/pageDocuments/GRKZJNMMRR.pdf.
Kahn, Race in a Bottle, 166.
Saul, “F.D.A. Approves a Heart Drug for African-Americans.”
Rose, Politics of Life, 25.
Inda argues that genetic researchers take a nonreductive approach to race and genetics, in that they account for the fact that social factors play a role in disease. Social factors, however, are seen simply to trigger “underlying molecular changes in an individual’s body.” We argue that, in a circular operation, this is reductionist, as it locates disease ultimately in the (racial) body. Inda, Racial Prescriptions, 107.
Roberts, Fatal Invention, 185–87.
See Inda, Racial Prescriptions, 106, who references our earlier work on this idea.
Anne Pollock, Medicating Race: Heart Disease and Durable Preoccupations with Difference (Durham, N.C.: Duke University Press, 2012), 165–69; Roberts, Fatal Invention, 185–89.
Inda, Racial Prescriptions; Jonathan Xavier Inda, “Materializing Hope: Racial Pharmaceuticals, Suffering Bodies, and Biological Citizenship,” in Corpus: An Interdisciplinary Reader on Bodies and Knowledge, ed. Monica J. Casper and Paisley Currah, 61–80 (New York: Palgrave Macmillan, 2011).
Pollock, Medicating Race, 169.
Dylan Ratigan, “Hot-Spotting: It’s How, Not How Much,” Huffington Post, November 28, 2011, http://www.huffingtonpost.com/dylan-ratigan/hotspotting-its-how-not-h_b_1116765.html (accessed November 28, 2011); also J. Hu, F. Wang, J. Sun, R. Sorrentino, and S. Ebadollahi, “A Healthcare Utilization Analysis Framework for Hot Spotting and Contextual Anomaly Detection,” in American Medical Informatics Association Annual Symposium Proceedings, 2012, 360–69, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3540544/ (accessed April 29, 2019).
The bottom line of U.S. health care reform is cost reduction—the underlying rationale for targeting the costliest 1 percent and coordinating cost-saving interventions. A 2012 report released by the Agency for Healthcare Research and Quality found that 1 percent of patients accounted for approximately one-fifth of health care spending in the United States in 2009. According to the U.S. Department of Health and Human Services, almost half of total health care spending can be attributed to 5 percent of the population, and the 15 percent most expensive health conditions account for 44 percent of total health care costs. Refer to Bush, “Health Care’s Costliest 1%.”
Planning and zoning laws, development schemes, and rental and mortgage structures were explicitly used to racialize the demographic layout of Camden City in relation to the county. In the 1960s, nearby suburbs and townships used financial and zoning powers to exclusively attract middle- to upper-class white families away from Camden; at the same time, eminent domain was used to remove poor and black residents from those areas. Refer to Howard Gillette Jr., Camden after the Fall: Decline and Renewal in a Post-industrial City (Philadelphia: University of Pennsylvania Press, 2006).
U.S. Census Bureau, “QuickFacts Beta,” http://www.census.gov/quickfacts/table/PST045214/3410000,00.
Kareem Fahim, “Rethinking Revitalization; in Crumbling Camden, New Challenges for a Recovery Plan,” New York Times, November 5, 2006, https://www.nytimes.com/2006/11/05/nyregion/05camden.html (accessed July 13, 2016); Poverty Research Institute, “Poverty in the City of Camden,” April 2007, http://poverty.lsnj.org/Pages/PovertyCityOfCamden041107.pdf (accessed April 29, 2019).
U.S. Census Bureau, “QuickFacts Beta.” These figures have since shifted. According to 2012–16 estimates, black and “Hispanic or Latino” populations of Camden are roughly equal in number, the medium household income is now $26,214, and individuals living below the poverty line are at 38.4 percent. See https://factfinder.census.gov/faces/nav/jsf/pages/community_facts.xhtml (accessed March 28, 2018).
CamConnect, “Camden Facts,” 2008, http://www.camconnect.org/datalogue/Camden_Facts_08_3-20-08_health.pdf (accessed July 13, 2016).
The practice is first attributed to Dr. Jeffrey Brenner. For a popular account of the development of medical hot-spotting, see, e.g., Atul Gawande, “The Hot Spotters,” New Yorker, January 24, 2011, http://www.newyorker.com/reporting/2011/01/24/110124fa_fact_gawande (accessed November 30, 2012).
Bryce Williams, “Medical Hotspotting: When Treating Patients Like Criminals Makes Sense,” Co-Exist (blog), November 23, 2011, http://www.fastcoexist.com/1678856/medical-hotspotting-when-treating-patients-like-criminals-makes-sense (accessed May 30, 2013).
Peter Bronski, “The Doctor on a Medical Mission,” Vassar: The Alumnae/i Quarterly,http://vq.vassar.edu/issues/2012/02/pushing-boundaries/the-doctor-on-a-medical-mission.html (accessed May 30, 2013). Note that the celebratory narrative that has coalesced around Dr. Brenner and the origins of medical hot-spotting in Camden does not address the way that medical data were first gathered in Camden. Nor is it yet clear how medical intelligence is gathered in the expansion of the hot-spotting model elsewhere. Poor residents who reside in medical hot spots may experience the attenuation of their right to privacy in the service of targeted health intervention. The recent project Camden ARISE—“administrative records integrated for service excellence”—raises additional concerns about privacy rights, by integrating data across social services and institutions, including hospitals, jails, and schools. The goal is to locate cross-sector super users and preemptively intervene to contain the costs of not only emergency room visits but also truancy and criminal justice system recidivism.
Bush, “Health Care’s Costliest 1%.”
Bronski, “Doctor on a Medical Mission.”
Aetna Foundation press release, “Aetna Foundation Awards $325,000 in Grants to Train Doctors for 21st-Century Health Care,” March 5, 2013, http://news.aetnafoundation.org/ (accessed May 30, 2013).
John Blair, “Universal Hot Spotting: The Future of American Medicine in the Face of a Novel Healthcare Delivery Approach,” Triple Helix (blog), http://asutriplehelix.org/node/185 (accessed May 30, 2013); also see the Frontline video Doctor Hotspot,http://video.pbs.org/video/2070853636/ (accessed June 13, 2013).
See Atul Gawande, “Seeing Spots,” New Yorker, January 27, 2011, https://www.newyorker.com/news/news-desk/seeing-spots (accessed May 30, 2013); Gawande, “Hot Spotters.” While we have specifically mentioned medical hot-spotting in Camden, New Jersey, there are numerous other pilot programs of patient-focused accountable care occurring across the country, such as the Special Care Program in Seattle for Boeing workers; CareOregon’s geomapping of high-cost users as part of its nonprofit health plan that serves Medicare and Medicaid patients; Southcentral Foundation’s health care system in Anchorage, Alaska, which targets Alaska Natives to coordinate care and cut costs; and the 2011 launch of the Center for Integrative Medicine, part of the Spectrum Health Medical Group in Grand Rapids, Michigan, which actively seeks out high-frequency patients for treatment of social and medical issues. Basically, the medical hot-spotting program developed in Camden has become a national movement and model (indeed, international). This is evident in the founding of the National Center for Complex Health and Social Needs—spearheaded by the Camden Coalition of Healthcare Providers—to unite groups working on care delivery that targets vulnerable communities in the United States in ways that cost less and improve clinical outcomes. The center was awarded a $1.3 million grant from the Aetna Foundation in 2016. Refer to Lilo H. Stainton, “Camden’s Targeting of Medical ‘Hot Spots’ Becomes Model for Other Poor Areas,” NJSpotlight, December 9, 2016, http://www.njspotlight.com/stories/16/12/08/camden-s-targeting-of-medical-hot-spots-becomes-model-for-other-poor-areas/ (accessed July 17, 2018).
Michael Omi and Howard Winant, Racial Formation in the United States (New York: Routledge, 2015).
The institutional racism of medicine includes lack of economic access to health care in relation to racial stratification of the economy; barriers to hospitals and health care institutions due to the closure, relocation, or privatization of hospitals that primarily serve minority populations; inequities in preventive care and treatment based on medical or biological differences, income, and so on; lack of culturally competent care and/or language accessibility; racial disparities in the provision of treatments and inclusion in research; unequal access to emergency care and excessive wait times; deposit requirements as a prerequisite to care; and the refusal of Medicaid patients. For an extended review, refer to Vernellia Randall, “Institutional Racism in U.S. Health Care,” Institute on Race, Health Care, and the Law, https://academic.udayton.edu/health/07humanrights/racial01c.htm (accessed April 29, 2019). Another practice of medical redlining that took public notice in California was the requiring of physician “economic credentials” (in addition to professional credentials) to qualify to perform surgeries in a hospital; doctors who serve costly patients could be rejected on the grounds of being “high risk” for financial loss. Robert Weinman, “Medical Red-Lining: ‘Economic Credentials’ for Physicians,” Clinical Electroencephalography 27, no. 4 (1996): 6–7. In general, the corporate dominance in U.S. health care has supported increasingly inequitable distribution of health care resources and thus the declining public health conditions of poor and minority urban communities. See David G. Whiteis, “Unhealthy Cities: Corporate Medicine, Community Economic Underdevelopment, and Public Health,” International Journal of Health Services 27, no. 2 (1997): 227–42, esp. 227.
Williams, “Medical Hotspotting.” Also see Lisa Duggan, The Twilight of Equality? Neoliberalism, Cultural Politics, and the Attack on Democracy (Boston: Beacon Press, 2003); David J. Roberts and Minelle Mahtani, “Neoliberalizing Race, Racing Neoliberalism: Placing ‘Race’ in Neoliberal Discourses,” Antipode 42, no. 2 (2010): 248–57; Michael Omi, “‘Slippin’ into Darkness’: The (Re)Biologization of Race,” Journal of Asian American Studies 13, no. 3 (2010): 343–58.
George Lipsitz incisively observes, “Competition for scarce resources in the North American context generates new racial enmities and antagonisms, which in turn promotes new variants of racism.” Lipsitz, American Studies in a Moment of Danger (Minneapolis: University of Minnesota Press, 2001), 12.
In the late 1990s, David G. Whiteis sounded an early warning: “The current emphasis on ‘managing’ medical care for cost containment disregards the social and environmental genesis of many health problems.” Whiteis, “Unhealthy Cities,” 229.
The first quotation is by Doug Eby, MD, vice president of medical services for Southcentral Foundation health care system, Anchorage, Alaska, quoted in Bush, “Health Care’s Costliest 1%.” The second is by Ed Sealover, “‘Hot Spotting’ May Be Way to Cool Cost of Health Care,” Denver Business Journal, July 27, 2012, http://www.bizjournals.com/denver/print-edition/2012/07/27/hot-spotting-may-be-way-to-cool-cost.html (accessed June 13, 2013).
April Michelle Herndon, “Collateral Damage from Friendly Fire? Race, Nation, Class and the ‘War against Obesity,’” Social Semiotics 15, no. 2 (2005): 132.
Raj Bhopal, “Spectre of Racism in Health and Health Care: Lessons from History and the United States,” BMJ 316, no. 7149 (1998): 1970–73, http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1113412/ (accessed May 30, 2013).
Whiteis, “Unhealthy Cities,” 229.
William A. Vega, Michael A. Rodriguez, and Elisabeth Gruskin, “Health Disparities in the Latino Population,” Epidemiologic Reviews 31, no.1 (2009): 99–112.
See Michelle Sarche and Paul Spicer, “Poverty and Health Disparities for American Indian and Alaska Native Children: Current Knowledge and Future Prospects,” Annals of the New York Academy of Sciences 1136 (2008): 126–36.
Moon S. Chen, “Cancer Health Disparities among Asian Americans,” Cancer 104, no. S12 (2005): 2895–2902.
See Chandak Ghosh, “Healthy People 2010 and Asian Americans/Pacific Islanders: Defining a Baseline of Information,” American Journal of Public Health 93, no. 12 (2003): 2093–98; Marguerite J. McNeely and Edward J. Boyko, “Type 2 Diabetes Prevalence in Asian Americans: Results of a National Health Survey,” Diabetes Care 27, no. 1 (2004): 66–69.
Roberts and Mahtani, “Neoliberalizing Race, Racing Neoliberalism,” 249, paraphrasing the arguments of David Wilson, Cities and Race: America’s New Black Ghettos (New York: Routledge, 2006).
Neoliberal self-care entails a shift to biological citizenship, from one who possesses rights to services to a manager of individual health risks in a context of enhanced social control and consumer access. Self-care disciplines individuals—targeting individual behaviors—in line with normative models of health, despite any structural issues that might preclude good health. Agency is privatized, as social values are redefined in the terms of market-based interests. Refer to Torin Monahan and Tyler Wall, “Somatic Surveillance: Corporeal Control through Information Networks,” Surveillance and Society 4, no. 3 (2007): 164; Susanne Bauer, “Societal and Ethical Issues in Human Biomonitoring—A View from Science Studies,” Environmental Health 7, Suppl. 1 (2008): 1, 8; Henry A. Giroux, “Spectacles of Race and Pedagogies of Denial: Anti-Black Racist Pedagogy under the Reign of Neoliberalism,” Communication Education 52, no. 3/4 (2003): 209.
Dana-Ain Davis, “Narrating the Mute: Racializing and Racism in a Neoliberal Moment,” Souls 9, no. 4 (2007): 349; Duggan, The Twilight of Equality? Our point here is not that all self-care is neoliberal: communities of color and socially/economically disadvantaged groups engage in self-care practices that are not solely determined by neoliberal logics (e.g., radical self-help, undercommons).
The neoliberal assertion of race-transcendent agency eclipses the ongoing impacts of structural racism, such as socioeconomic disinvestment in minority neighborhoods and the political neglect of people of color.
Bush, “Health Care’s Costliest 1%,” 32.
Frontline, Doctor Hotspot.
Monahan and Wall, “Somatic Surveillance,” 163; Herndon, “Collateral Damage from Friendly Fire?,” 132.
Loïc Wacquant, “Crafting the Neoliberal State: Workfare, Prisonfare, and Social Insecurity,” Sociological Forum 25, no. 2 (2010): 218.
George L. Kelling and William J. Bratton, “Declining Crime Rates: Insiders’ Views of the New York City Story,” Journal of Criminal Law and Criminology 88, no. 4 (1998): 1217–31; Amy Propen, “Critical GPS: Toward a New Politics of Location,” ACME 4, no. 1 (2006): 135, https://www.acme-journal.org/index.php/acme/article/view/731.
Williams, “Medical Hotspotting.”
Whether for biosecurity or marketing purposes, spatial profiling sets up the possibility of expectations that can be linked to spaces and populations through the act of targeting. Targeting territorializes such expectations and involves place-particularizing metaphors, masculinist ideas about penetrating and mastering space, and a network logic (i.e., targets are under the purview of a larger, more encompassing gaze and database). Targeting in terms of “seeing-as-destroying” is beyond the scope of this chapter; refer to Derek Gregory, “‘In Another Time-Zone, the Bombs Fall Unsafely. . . .’: Targets, Civilians and Late Modern War,” http://geographicalimaginations.files.wordpress.com/2012/07/gregory-in-another-time-zone_illustrated.pdf (accessed May 30, 2013); Rey Chow, The Age of the World Target: Self-Referentiality in War, Theory, and Comparative Work (Durham, N.C.: Duke University Press, 2006); Caren Kaplan, “Precision Targets: GPS and the Militarization of U.S. Consumer Identity,” American Quarterly 58, no. 3 (2006): 693–713.
Jeremy W. Crampton, “The Biopolitical Justification for Geosurveillance,” Geographical Review 97, no. 3 (2007): 390. Also see Chow, Age of the World Target, 40; Kaplan, “Precision Targets,” 694–95; and Samuel Weber, Targets of Opportunity: On the Militarization of Thinking (New York: Fordham University Press, 2005).
Kaplan, “Precision Targets,” 697. Medical hot-spotting is dependent on mining for data and the geographical processing of medical metadata—that is, the mass collecting, geographical networking, and commercial deployment of medical data. Set within the historical context of racialized dispossession and biopiracy in Western medicine, data mining and the metadata-processing industry have the potential to reproduce and amplify racial domination, in terms of both political economy and epistemological politics. In the most general sense, metadata aggregates scale up and interrelate different data sets, providing more material to enhance our understanding of the larger social and environmental genesis of health problems. Yet with medical hot-spotting, the imperative to find high utilizers of the health care system entails a self-fulfilling process of data analysis: the sick and disenfranchised are always the population, never the control group, and those who are healthy among the population are statistically illegible, making the population always appear sicker than it might be (note that this part of the critique is directed toward statistical analysis; by no means do we wish to assert that the medically vulnerable and ill are not really very sick). Medical hot-spotting could also be perceived as an auditing practice within a self-fulfilling political economy. Just as postindustrial development of infotechnology and “big data” was historically enabled by subverting capital from inner cities and people of color, medical hot-spotting risks contributing to this disinvestment. Medical intelligence and metadata analysis—at the core of medical hot-spotting—essentially represent a new division of labor of the management of the poor and industrial remains; the industry audits the effects and casualties of the process that gave rise to it.
Propen, “Critical GPS,” 136.
Jenna M. Loyd, Health Rights Are Civil Rights: Peace and Justice Activism in Los Angeles, 1963–1978 (Minneapolis: University of Minnesota Press, 2014), 30; Loïc Wacquant, “From Slavery to Mass Incarceration: Rethinking the ‘Race Question’ in the US,” New Left Review 13 (2002): 41–60; Wacquant, “Crafting the Neoliberal State,” 197–220.
While we are unable to explore this here, medical hot-spotting has been extended into poor white communities. We might see this as part of a broader metaphorical racializing (as nonwhite) those “failed” white citizens who do not live up to ideals of whiteness. See, e.g., Tiffany Willoughby-Herard, Waste of a White Skin: The Carnegie Corporation and the Racial Logic of White Vulnerability (Berkeley: University of California Press, 2015).
Stephen Graham, Cities under Siege: The New Military Urbanism (London: Verso, 2011), 99.
Katharyne Mitchell, “Pre-black Futures,” Antipode 41, no. 1 (2009): 254. Part of the legacy of militarized visual culture, the targeting operations of medical hot-spotting dramatically translate military dreams of high-tech omniscience and rationality into the governance of urban civil society, extending the military–industrial complex into everyday life. See Crampton, “Biopolitical Justification for Geosurveillance”; Graham, Cities under Siege, xi; Matthew Sparke, “From Global Dispossession to Local Repossession: Towards a Worldly Cultural Geography of Occupy Activism,” in The New Companion to Cultural Geography, ed. Huala Johnson, Richard Schein, and Jamie Winders, 387–408 (Oxford: Wiley-Blackwell, 2013), also available at http://faculty.washington.edu/sparke/ (accessed June 13, 2013).
Through the lens of an epistemology of racial Otherness, black subjects could be understood as posing a threat to the health of the population as a whole, in that their ill health (which, as we argue, is produced through past and present social factors) introduces disequilibrium into the population. Rather than addressing the social causes of ill health, however, blacks are in turn blamed as the cause of disequilibrium.
Michel Foucault, The History of Sexuality: Vol 1. An Introduction, trans. Robert Hurley (Harmondsworth, U.K.: Penguin, 1978), 137.
Race may not be biological, but racism, structural disadvantage, and the historical accumulation of suffering undeniably have biological effects that sediment in the black body. In this way, as Anne Pollock notes, race is “fixed enough for action,” and simultaneously, as Giroux reminds us, “the color line in America is neither fixed nor static.” Pollock, Medicating Race, 179; Giroux, “Spectacles of Race,” 209.
Bliss, “Hope against Hope,” 93.
See H. Jack Geiger, “The Origins of Community Health Centers,” United Health Foundation, n.d., http://optumday.com/UHF/foh_microsite/pdfs/geiger.pdf (accessed April 29, 2019).
Nelson, Body and Soul; Mary T. Bassett, “Beyond Berets: The Black Panthers as Health Activists,” American Journal of Public Health 106, no. 10 (2016): 1741–43.
Black Panther Party Research Project, “Black Panther Party Platform and Program,” http://web.stanford.edu/group/blackpanthers/history.shtml (accessed March 3, 2018).
The politics of refusal could also be explored through the important place of health in historical struggles for social change and historical social movements against anti-black violence; see, e.g., Loyd, Health Rights Are Civil Rights. On the persistence of the white–black health divide, refer to Nadine Ehlers and Leslie R. Hinkson, eds., Subprime Health: Debt and Race in U.S. Medicine (Minneapolis: University of Minnesota Press, 2017).
For further examination of the concept of “not yet realized,” refer to Judith Butler, interviewed by George Yancy, “What’s Wrong with ‘All Lives Matter’?,” Opinionator (blog), January 12, 2015, http://opinionator.blogs.nytimes.com/2015/01/12/whats-wrong-with-all-lives-matter/ (accessed July 13, 2016).
National White Coat Die-In demonstrations were held on December 10, 2014.
Giroux, “Reading Hurricane Katrina.”
Renee Lewis, “Medical Students Stage Nationwide Die-In over Racial Bias in Health Care,” Aljazeera America, December 10, 2014, http://america.aljazeera.com/articles/2014/12/10/medical-studentsferguson.html (accessed July 13, 2016).
“Medical Students to Hold Nationwide ‘Die-Ins’ and Protests Wednesday Because #BlackLivesMatter,” Physicians for a National Health Program, December, 9, 2014, http://www.pnhp.org/news/2014/december/medical-students-to-hold-nationwide-‘die-ins’-and-protests-wednesday-because-blac (accessed July 14, 2016).
For example, WhiteCoats4BlackLives is a medical student–run organization that emerged from the National White Coat Die-In demonstrations. To safeguard the lives and well-being of patients through eliminating racism, members pursue such goals as raising awareness of racism as a public health concern, ending racial discrimination in medical care, and preparing future physicians to be advocates for racial justice. The latter involves not only recruiting, hiring, and retaining minority medical students and physicians but also developing “national medical school curricular standards that include information about the history of racism in medicine, unconscious racial bias in medical decision-making, and strategies for dismantling structural racism.” Refer to the organization’s website, http://www.whitecoats4blacklives.org/about (accessed July 13, 2016).
Rachel Colls, “Materialising Bodily Matter: Intra-action and the Embodiment of ‘Fat,’” Geoforum 38 (2007): 358.
Le’a Kent, “Fighting Abjection: Representing Fat Women,” in Bodies out of Bounds: Fatness and Transgression, ed. Jana Evans Braziel and Kathleen LeBesco (Berkeley: University of California Press, 2000), 132.
The World Health Organization has established the categories of overweight as having a BMI between 25.0 and 29.9 kilograms per square meter and obesity as having a BMI greater than 30.0 kilograms per square meter. Importantly, obesity scientists and clinicians are presumed to know the “truth” of obesity and to have the moral and intellectual authority to label it a disease and to prescribe treatment. We could describe such power using Foucault’s concept of the clinical gaze—a panoptic kind of “expert seeing” that determines what will appear. This gaze shapes the realm of the possible and works to develop hegemonic norms through which individuals are administered. See World Health Organization, “Obesity,” http://www.who.int/topics/obesity/en/ (accessed October 15, 2013).
Susan Bordo, Unbearable Weight: Feminism, Western Culture, and the Body (Berkeley: University of California Press, 1995), 190.
Cartesian logic refers to the philosophical and scientific system developed by René Descartes in the seventeenth century. Descartes viewed the mind as being wholly separate from (and superior to) the (ideally subservient) corporeal body. This logic structured Enlightenment thought, which continues to undergird Western knowledge systems.
Failure to thrive (FTT) is a biomedical term used generally in the field of pediatrics. It is defined as “decelerated or arrested physical growth (height and weight measurements fall below the third or fifth percentile, or a downward change in growth across two major growth percentiles) and is associated with abnormal growth and development.” See http://www.hopkinsmedicine.org/healthlibrary/conditions/pediatrics/failure_to_thrive_90,P02297/ (accessed December 11, 2016). Within pediatrics, a shift is occurring whereby obesity is variously beginning to be identified as either (1) the “new failure to thrive” or (2) overthriving that must be prevented. On the new failure to thrive, see, e.g., N.S. Harper, “Neglect: Failure to Thrive and Obesity,” Pediatric Clinics of North America 61, no. 5 (2014): 937–57, http://www.child-encyclopedia.com/child-obesity/according-experts/obesity-prevention-during-infancy-change-focus (accessed April 30, 2019). On overthriving, see http://www.child-encyclopedia.com/child-obesity/according-experts/obesity-prevention-during-infancy-change-focus. In this chapter, we do not address obesity as “overthriving,” precisely due to the deadly conditions that produce obesity and the death effects (at times) of obesity itself. This could hardly, in our view, be seen as overthriving. Instead, we take the narrow “obesity as FTT” designation and apply it to individuals and populations more generally. Our central claim is that fat people are seen as failing to thrive and that the counteraffirmation to thrive (through governing interventions that labor to reduce or eradicate weight) works against itself to actually curtail or truncate life.
Kent, “Fighting Abjection,” 371.
Indeed, this is the main motto of one of the key U.S. health care providers/insurers, Kaiser Permanente. As it says on its primary website, “Nothing matters more than your health. That’s why your whole care team is connected—to you, and to each other—to make it faster and easier to get the care you need. From doctors sharing information to improve your care, to digital tools that make it easy to manage your health, everything works together to help you thrive—and fit your life. That’s the power of teamwork.” See https://thrive.kaiserpermanente.org/ (accessed January 20, 2017).
Catherine Waldby, “Stem Cells, Tissue Cultures and the Production of Biovalue,” Health 6, no. 3 (2002): 310.
Nikolas Rose, The Politics of Life Itself: Biomedicine, Power, and Subjectivity in the Twenty-First Century (Princeton, N.J.: Princeton University Press, 2007), 32.
Exploring this delineation is beyond the scope of this chapter. It is, however, a necessary area for further investigation.
World Health Organization Fact Sheet, “Obesity and Overweight,” http://www.who.int/en/news-room/fact-sheets/detail/obesity-and-overweight (accessed May 2, 2019).
For adult obesity rates, see Centers for Disease Control and Prevention, “Adult Obesity Facts,” https://www.cdc.gov/obesity/data/adult.html (accessed May 1, 2019). For child obesity rates, see Centers for Disease Control and Prevention, “Childhood Obesity Facts,” https://www.cdc.gov/obesity/data/childhood.html (accessed May 1, 2019).
See U.S. Department of Health and Human Services, “Overweight and Obese Statistics,” https://www.niddk.nih.gov/health-information/health-statistics/Pages/overweight-obesity-statistics.aspx (accessed January 7, 2016).
U.S. Department of Health and Human Services.
For a discussion and problematization of the concept of “excess deaths” related to obesity, see Julie Guthman, “Fatuous Measures: The Artificial Construction of the Obesity Epidemic,” Critical Public Health 23, no. 3 (2013): 263–73.
Fitness, here, signified whether one was a worthy American or not, a point we return to later.
Associated Press, “Obesity Bigger Threat Than Terrorism?,” March 1, 2006. For more about bioterrorism, “fatwa(r)” rhetoric, and an analysis of the “war against obesity,” refer to April Michelle Herndon, “Collateral Damage from Friendly Fire? Race, Nation, Class and the ‘War against Obesity,’” Social Semiotics 15, no. 2 (2005): 128–41. Also see Charlotte Biltekoff, “The Terror Within: Obesity in Post 9/11 U.S. Life,” American Studies 48, no. 3 (2007): 29–48.
American Medical Association, “AMA Adopts New Policies on Second Day of Voting at Annual Meeting,” 2013, https://ama-assn.org/ (accessed June 25, 2013), emphasis added. Also see http://www.theatlantic.com/health/archive/2015/03/how-obesity-became-a-disease/388300/.
Shiriki Kumanyika and Ross Brownson, Handbook of Obesity Prevention: A Resource for Health Professionals (New York: Springer, 2007). Also see Trust for America’s Health and Robert Wood Johnson Foundation, “State of Obesity,” fact sheet, http://stateofobesity.org/healthcare-costs-obesity/ (accessed January 11, 2017).
Kathryn Pauly Morgan, “Foucault, Ugly Ducklings, and Technoswans: Analyzing Fat Hatred, Weight-loss Surgery, and Compulsory Biomedicalized Aesthetics in America,” International Journal of Feminist Approaches to Bioethics 4, no. 1 (2011): 204.
“Governing Obese Bodies in a Control Society,” Junctures: The Journal for Thematic Dialogue 11 (2008), http://www.junctures.org/index.php/junctures/article/view/35/372.
Morgan, “Foucault, Ugly Ducklings, and Technoswans,” 197.
On the critique of BMI scales, see, e.g., Bethan Evans and Rachel Colls, “Measuring Fatness, Governing Bodies: The Spatialities of the Body Mass Index (BMI) in Anti-obesity Politics,” Antipode 41 (2009): 1051–83.
See U.S. Department of Health and Human Services, NIH, “Overweight and Obese Statistics,” https://www.niddk.nih.gov/health-information/health-statistics/Pages/overweight-obesity-statistics.aspx (accessed December 11, 2016), emphasis added. They do conclude with the following: “Many factors can lead to energy imbalance and weight gain. They include genes, eating habits, how and where people live, attitudes and emotions, life habits, and income.” However, personal eating habits—“calories in”—are clearly presented as the primary cause of obesity, as the emphasized portion of the quote demonstrates.
Nicole L. Novak and Kelly David Brownell, “Obesity: A Public Health Approach,” Psychiatry Clinics of North America 34, no. 4 (2011): 895–909.
For discussion of the Alexander Draper case, see Shauneen M. Garrahan and Andrew W. Eichner, “Tipping the Scale: A Place for Childhood Obesity in the Evolving Legal Framework of Child Abuse and Neglect,” Yale Journal of Health Policy, Law, and Ethics 12, no. 2 (2012): 336–70. For discussion of the Anamarie Regino case, see Herndon, “Collateral Damage from Friendly Fire?”
The U.S. Weight Loss and Diet Control Market, 15th ed. (Marketdata LLC, 2019), https://www.giiresearch.com/report/md191871-us-weight-loss-diet-control-market-11th-edition.html (accessed May 2, 2019).
Lauren Berlant, “Risky Bigness: On Obesity, Eating, and the Ambiguity of ‘Health,’” in Against Health: How Health Became the New Morality, ed. Jonathan M. Metzl and Anna Kirkland (New York: New York University Press, 2010), 31.
Michel Foucault, Society Must Be Defended: Lectures at the Collège de France 1975–1976, trans. David Macey (New York: Picador, 2003), 139.
See https://www.rxlist.com/alli-side-effects-drug-center.htm (accessed April 30, 2019).
Tetsuji Takayama, Shinichi Katsuki, Yasuo Takahashi, Motoh Ohi, Shuichi Nojiri, Sumio Sakamaki, Junji Kato, Katsuhisa Kogawa, Hirotsugu Miyake, and Yoshiro Niitsu, “Aberrant Crypt Foci of the Colon as Precursors of Adenoma and Cancer,” New England Journal of Medicine 339, no. 18 (1998): 1277–84.
Morgan, “Foucault, Ugly Ducklings, and Technoswans,” 194.
Walter J. Pories, “Bariatric Surgery: Risks and Rewards,” Journal of Clinical Endocrinology and Metabolism 93, no. 11 (2008): S89–96, http://press.endocrine.org/doi/full/10.1210/jc.2008-1641#sthash.6ishn6PU.dpuf. See also Su Hsin Chang, Carolyn R. T. Stoll, Jihyun Song, J. Esteban Varela, Christopher J. Eagon, and Graham A. Colditz, “Bariatric Surgery: An Updated Systematic Review and Meta-analysis, 2003–2012,” JAMA Surgery, 149, no. 3 (2014): 275–87.
See the Centers for Disease Control and Prevention website, http://www.cdc.gov/ncbddd/disabilityandhealth/obesity.html (accessed January 20, 2017).
See Morgan Downey and Christopher D. Still, “The Affordable Care Act’s Impact on Persons with Obesity,” http://www.downeyobesityreport.com/wp-content/uploads/The-Affordable-Care-Act2.pdf (accessed December 1, 2016). See also http://www.reuters.com/article/us-obesity-idUSBRE83T0C820120430.
White House Task Force on Childhood Obesity, Solving the Problem of Childhood Obesity within a Generation (Washington, D.C.: Executive Office of the President of the United States, 2010).
White House, 23, emphasis added. Importantly, pillar 3, “Providing Healthy Food in Schools,” and pillar 4, “Access to Healthy, Affordable Food,” do address wider societal factors outside individual behavior. In relation to pillar 4, the report specifically recommends the following: “increase physical access to healthy food by eliminating food deserts (primarily through the Healthy Food Financing Initiative); increase the production of fruits, vegetables and whole grains; evaluate the effect of subsidies and sales taxes; encourage the food and restaurant industry to develop healthy foods for young people; and address links of hunger and obesity by increasing participation rates in USDA nutrition assistance programs (such as school lunches and SNAP—commonly known as food stamps).” These recommendations reflect the changes many antiracist, antipoverty, and antihunger activists have long been advocating for. Of note, however, is that they follow recommendations that give priority to individual action, and their implementation is a long way in coming. For further analysis of the report, particularly its racial and gendered dimensions, see Jeanne Firth, “Healthy Choices and Heavy Burdens: Race, Citizenship and Gender in the ‘Obesity Epidemic,’” Journal of International Women’s Studies 13, no. 2 (2012): 33–50. These efforts are under review in the Trump administration.
Julie Guthman and Melanie DuPuis, “Embodying Neoliberalism: Economy, Culture, and the Politics of Fat,” Environment and Planning D: Society and Space 24 (2006): 427–48, esp. 229.
Guthman and DuPuis, 443.
See https://www.niddk.nih.gov/health-information/health-statistics/Pages/overweight-obesity-statistics.aspx (accessed January 20, 2017).
Researchers measure food deserts in various ways. However, when they label an area a “food desert,” they tend to mean that those individuals (and the community as a whole) living within the area lack easy access to healthy food.
Refer to “Unshared Bounty: How Structural Racism Contributes to the Creation and Persistence of Food Deserts,” http://www.racialjusticeproject.com/wp-content/uploads/sites/30/2012/06/NYLS-Food-Deserts-Report.pdf, quote on 6. Note that the USDA’s Economic Research Service found that “in all but very dense urban areas, the higher the percentage of minority population, the more likely the area is to be a food desert.” See Paula Dutko, Michele Ver Ploeg, and Tracey Farrigan, “Characteristics and Influential Factors of Food Deserts,” https://www.ers.usda.gov/webdocs/publications/45014/30940_err140.pdf (accessed April 30, 2019).
As many food and antipoverty activists have noted, there is a correlation between hunger and fatness. According to the Center on Hunger and Poverty, lack of resources can lead to weight gain because (1) individuals might maximize caloric intake with inexpensive high-calorie food, (2) individuals might choose food quantity—to abate hunger—over food quality, (3) individuals might overeat when food is available, to ward against times when it will be scarce, and (4) the body might adapt physiologically to store fat to compensate for times when food is scarce. See “The Paradox of Hunger and Obesity in America,” http://www.agnt.org/humane/hungerandobesity.pdf (accessed January 11, 2017).
Julie Guthman, “Doing Justice to Bodies? Reflections on Food Justice, Race, and Biology,” Antipode 46, no. 4 (2014): 1153–71, esp. 1165.
Didier Fassin, “Another Politics of Life Is Possible,” Theory, Culture, and Society 26, no. 5 (2009): 44–60. On subcitizenship, see Matthew Sparke, “Austerity and the Embodiment of Neoliberalism as Ill-Health: Towards a Theory of Biological Sub-citizenship,” Social Science and Medicine 187 (2017): 287–95. He argues, “The ‘sub’ in sub-citizenship is used . . . to elucidate power relations and processes of subordination that simple binary accounts of citizenship and its others tend to foreclose. Instead, attention to the power relations and processes producing sub-citizenship opens up questions about differential degrees and dynamics of health rights disenfranchisement, their various incarnations in adverse incorporation as well as exclusion, and their uneven impacts on actual health outcomes.”
Lauren Berlant, Cruel Optimism (Durham, N.C.: Duke University Press, 2011).
See Julie Guthman, “Binging and Purging: Agrofood Capitalism and the Body as Socioecological Fix,” Environment and Planning A 47 (2015): 2531.
Natalie Boero, “Bypassing Blame: Bariatric Surgery and the Case of Biomedical Failure,” in Biomedicalization: Technoscience, Health, and Illness in the U.S., ed. Adele. E. Clarke, Laura Mamo, Jennifer Ruth Fosket, Jennifer R. Fishman, and Janet K. Shim (Durham, N.C.: Duke University Press, 2010), 315.
Foucault, Society Must Be Defended, 258.
Catherine Waldby and Robert Mitchell, Tissue Economies: Blood, Organs, and Cell Lines in Late Capitalism (Durham, N.C.: Duke University Press, 2006), 115.
Daniel Del Vecchio and Hetal Fichadia, “Autologous Fat Transplantation—A Paradigm Shift in Breast Reconstruction,” in Breast Reconstruction: Current Techniques, ed. Marzia Salgarello (IntechOpen, 2012), http://www.intechopen.com/books/breast-reconstruction-current-techniques (accessed March 11, 2012).
See Sharon Begley, “All Natural: Why Breasts Are the Key to the Future of Regenerative Medicine,” Wired, November 2010, https://www.wired.com/2010/10/ff-futureofbreasts/; P. Zuk, “Adipose-Derived Stem Cells in Tissue Regeneration: A Review,” ISRN Stem Cells (2013): 1–35.
Begley, “All Natural.”
Cited in Scott Terranella, “Fat: Source of Stem Cells: Researchers Report Turning Fat Cells into Muscle,” ABC News, April 10, [no year], http://abcnews.go.com/Health/story?id=117521 (accessed March 11, 2014).
Bruce Carlson, Principles of Regenerative Biology (Burlington, Mass.: Academic Press, 2007), 244.
NIH, U.S. National Library of Medicine, https://clinicaltrials.gov/ct2/results?cond=&term=adipose+stem+cells&cntry=&state=&city=&dist. This figure is current as of April 2019.
Jeffery M. Gimble, Adam J. Katz, and Bruce A. Bunnell, “Adipose-Derived Stem Cells for Regenerative Medicine,” Circulation Research: Journal of the American Heart Association 100 (2007): 1249.
See Zuk, “Adipose-Derived Stem Cells in Tissue Regeneration.” The clinical potential of human ADSCs is still unclear and requires deeper investigation. See Michelle Locke, Vaughan Feisst, and P. Rod Dunbar, “Concise Review: Human Adipose-Derived Stem Cells: Separating Promise from Clinical Need,” Stem Cells 29, no. 3 (2011): 404–11.
Begley, “All Natural.”
In saying this, we are suggesting that breasts are not necessary for the subject to stay alive. Undeniably, however, breasts play a large role in reproductive labor (that is, in terms of breast-feeding) and thus in the survival of children.
See “New Breast Reconstruction Procedure Demonstrates Long Term Success in European Trial; Data Reported from Cytori’s RESTORE-2 Study of the Celution(R) System,” http://ir.cytori.com/files/doc_news/CYTX_News_2011_3_2_General.pdf. Two clinical trials have been conducted using RESTORE, and it has been approved for use (and is being used) in Australia. http://ir.cytori.com/investor-relations/News/news-details/2013/Cytoris-Celution-System-Approved-in-Australia-for-Processing-and-Delivering-Adipose-Derived-Regenerative-Cells/default.aspx.
Ramon Pérez-Cano, J. J. Vranckx, J. M. Lasso, C. Calabrese, B. Merck, A. M. Milstein, E. Sassoon, E. Delay, and E. M. Weiler-Mithoff, “Prospective Trial of Adipose-Derived Regenerative Cell (ADRC)-Enriched Fat Grafting for Partial Mastectomy Defects: The RESTORE-2 Trial,” European Journal of Surgical Oncology 38, no. 5 (2012): 382–89.
See the Neopec homepage, http://www.neopec.com.au/.
The clinical trial for the Neopec technology was completed in late 2012, and proof of principle was established. See “Neopec Clinical Trial Completed,” http://www.neopec.com.au/index.php/recent-news/89-2012/132-neopec-clinical-trial-completed (accessed January 20, 2017).
See “Stem Cell Therapy: How American CryoStem Is Leading the Way in Preparing Individuals for Personalized Regenerative Medicine,” https://www.prnewschannel.com/2016/07/14/stem-cell-therapy-how-american-cryostem-is-leading-the-way-in-preparing-individuals-for-personalized-regenerative-medicine/ (accessed January 11, 2017).
Melinda Cooper, Life as Surplus: Biotechnology and Capitalism in the Neoliberal Era (Seattle: University of Washington Press, 2008), 125.
Morikuni Tobita, “Adipose-Derived Stem Cells: Current Findings and Future Perspectives,” Discovery Medicine 11, no. 57 (2011): 160–70. Tobita argues, however, that the effect of ADSCs is a controversial topic: other studies have reported that ADSCs inhibited breast cancer metastasis. Regardless, as he notes, the effects of adipose tissue on tumor cells should be carefully examined before future applications of stem cells therapies.
Waldy and Mitchell, Tissue Economies, 56.
Rose, Politics of Life Itself, 25.
See http://fattransfernewyork.com/cryopreservation-adult-stem-cells/ (accessed January 6, 2016).
Waldby and Mitchell, Tissue Economies, 83.
BioLife Cell Bank is now closed. Their “Banking Packages” website had previously been available at: http://www.biolifecellbank.com/for-patients/service-packages/.
Refer to “Stem Cell ‘Cowboy Culture’ Emerging in Texas—and Australia” in the Stem Cell Foundation of Australia e-newsletter, April 2013, http://www.stemcellfoundation.net.au/news/newsletters/april-2013. Also see Sophie Scoot and Alison Branley, “Stem Cell Warning: Experts Fear Experimental Treatments Will Lead to Serious Injury,” ABC News, December 13, 2013, http://www.abc.net.au/news/2013-12-18/stem-cell-warning3a-experts-fear-experimental-treatments-will-/5164636.
For instance, see Gina Kolata, “A Cautionary Tale of ‘Stem Cell Tourism,’” New York Times, June 22, 2016, https://www.nytimes.com/2016/06/23/health/a-cautionary-tale-of-stem-cell-tourism.html (accessed June 20, 2016).
American Cancer Society, “Cancer Facts and Figures, 2017–2018,” https://www.cancer.org/content/dam/cancer-org/research/cancer-facts-and-statistics/breast-cancer-facts-and-figures/breast-cancer-facts-and-figures-2017-2018.pdf. (accessed July 23, 2018). “Crude 10-year survival rates are 80% for white women, 78% for Hispanic American women, 66% for black women, and 82% for Asian women.” See Javaid Iqbal, Ophira Ginsburg, and Paula A. Rochon, “Differences in Breast Cancer Stage at Diagnosis and Cancer-Specific Survival by Race and Ethnicity in the United States,” JAMA 313, no. 2 (2015): 166.
American Cancer Society, “Cancer Facts and Figures for African Americans, 2016–2018,” http://www.cancer.org/acs/groups/content/@editorial/documents/document/acspc-047403.pdf (accessed July 24, 2018).
Joseph H. Shin, “Socioeconomic Disparities in Immediate Breast Reconstruction: Public vs. Private Insurance,” American Association of Plastic Surgeons Annual Conference, 2013, http://meeting.aaps1921.org/abstracts/2013/19.cgi.
Just over a decade ago, the average cost of TRAM flap reconstructions was at $19,607 (range, $11,948–$49,402), compared with $15,497 for prosthetic reconstructions (range, $6,422–$40,015). See Scott Spear, Samir Mardini, and Jason C. Ganz, “Resource Cost Comparison of Implant-Based Breast Reconstruction versus TRAM Flap Breast Reconstruction,” Plastic and Reconstructive Surgery 112, no. 1 (2003): 101–5. According to US News, the cost of breast reconstruction has more than tripled in the last decade. Refer to Kathleen Doheny, “Few Women Get Breast Reconstruction after Mastectomy,” US News, December 8, 2011, http://health.usnews.com/health-news/family-health/cancer/articles/2011/12/08/few-women-get-breast-reconstruction-after-mastectomy-study.
As Rose has remarked, individuals are increasingly expected to partake of the ethic of active citizenship: “This is an ethic in which the maximization of lifestyle, potential, health, and quality of life has become almost obligatory, and where negative judgments are directed toward those who will not [or cannot], for whatever reason, adopt an active, informed, positive, and prudent relation to the future.” Rose, Politics of Life Itself, 25.
Kathleen LeBesco, “Neoliberalism, Public Health, and the Moral Perils of Fatness,” Critical Public Health 21, no. 2 (2011): 161.
This campaign has not been without its critics. In an open letter, the organization NoLose critiqued the I STAND images as being an example of white fat activism that failed to address the socioeconomic and race-based specificities of fat politics or represent the voices of people of color and poor communities. See http://nolose.org/about/policy/fat-white-activism-poc/ (accessed July 24, 2018).
Berlant, Cruel Optimism, 115.
Emily Yates-Doerr and Megan A. Carney, “Demedicalizing Health: The Kitchen as a Site of Care,” Medical Anthropology 35, no. 4 (2016): 313.
Gimble et al., “Adipose-Derived Stem Cells for Regenerative Medicine,” 1249. In this incantation, fat banking is ostensibly imagined—albeit perhaps problematically—as a solution to the obesity epidemic. This has the potential to rework existing discourses of obesity, though the reality of such practices is still a long way off, and the ethics is questionable.
Mark Mather, Linda A. Jacobsen, and Kelvin M. Pollard, “Aging in the United States,” Population Bulletin 70, no. 2 (2015), http://www.prb.org/pdf16/aging-us-population-bulletin.pdf (accessed March 5, 2018).
Michel Foucault, Society Must Be Defended: Lectures at the Collège de France 1975–1976, trans. David Macey (New York: Picador, 2003), 244.
Melinda Cooper, “Resuscitations: Stem Cells and the Crisis of Old Age,” Body and Society 12, no. 1 (2006): 2.
Recall, as we outline in the introduction to this volume, that biopolitics is generally a politics of security—securing the population against anything from endemic diseases to criminal conduct, particularly through the biologized apparatuses of health and medicine.
Biocultures of aging refers to various cultural spheres where biomedical attitudes toward age pervade how we think about age and the process of aging.
Peter Laslett, A Fresh Map of Life: The Emergence of the Third Age (London: Weidenfeld and Nicolson, 1989).
For a range of definitions of successful aging, see Ann Bowling, “Aspirations for Older Age in the 21st Century: What Is Successful Aging?,” International Journal of Aging and Human Development 64, no. 3 (2007): 263–97.
Julia Rozanova, “Discourse of Successful Aging in The Globe & Mail: Insights from Critical Gerontology,” Journal of Aging Studies 24, no. 4 (2010): 215.
Paul Higgs, Miranda Leontowitsch, Fiona Stevenson, and Ian Rees Jones, “Not Just Old and Sick: The ‘Will to Health’ in Later Life,” Aging and Society 29 (2009): 690.
Cooper, “Resuscitations,” 5.
Brett Neilson, “Anti-ageing Cultures, Biopolitics and Globalisation,” Cultural Studies Review 12, no. 2 (2006): 149–64.
Some topics not covered here include annuities, pensions, and life insurance to anti-aging products to Medicare policy.
This is particularly the case in the American context, where individualism continues to be highly prized.
Neena L. Chappell, Ellen Gee, Lynn McDonald, and Michael Stones, Aging in Contemporary Canada (Toronto: Prentice-Hall, 2002), 12; Stephen Katz and Barbara L. Marshall, “Is the Functional ‘Normal’? Aging, Sexuality and the Bio-marking of Successful Living,” History of the Human Sciences 17, no. 1 (2004): 63.
Sharon R. Kaufman, “Making Longevity in an Aging Society: Linking Ethical Sensibility and Medicare Spending,” Medical Anthropology 28, no. 4 (2009): 317.
Stephen Katz and Barbara Marshall, “New Sex for Old: Lifestyle, Consumerism, and the Ethics of Aging Well,” Journal of Aging Studies 17 (2003): 12.
Courtney Everts Mykytyn, “Anti-aging Is Not Necessarily Anti-death: Bioethics and the Front Lines of Practice,” Medicine Studies 1 (2009): 214.
“Resources for Encore Seekers,” http://encore.org/resources/encore-seekers/ (accessed January 23, 2018).
John Wallis Rowe and Robert L. Kahn, Successful Aging (New York: Random House, 1998).
Stephen Katz, “Busy Bodies: Activity, Aging, and the Management of Everyday Life,” Journal of Aging Studies 14, no. 2 (2000): 142.
The geographies of seniors and eldercare entail various forms of migration, medical tourism, and segmented landscapes of retirement communities. Refer to Stephen Katz, “Old Age as Lifestyle in an Active Society,” Doreen B. Townsend Center Occasional Paper 19 (1999); Kevin McHugh, “The ‘Ageless Self’? Emplacement of Identities in Sun Belt Retirement Communities,” Journal of Aging Studies 14, no. 1 (2000): 103–15.
The Milken Institute—the think tank behind the ranking—cites AARP (formerly the American Association of Retired Persons) and National Aging in Place Council research that up to 90 percent of older people want to age in place and at home to maintain their independence. Refer to Milken Institute, “Best Cities of Successful Aging,” 2014, http://successfulaging.milkeninstitute.org/2014/best-cities-for-successful-aging-report-2014.pdf (accessed January 23, 2018); National Aging in Place Council, “Act III: Your Plan for Aging in Place,” http://www.ageinplace.org/ (accessed January 23, 2018).
Isabel Dyck, Pia Kontos, Jan Angus, and Patricia McKeever, “The Home as a Site for Long-Term Care: Meanings and Management of Bodies and Spaces,” Health and Place 11 (2005): 173–85; Qin Ni, Ana Belén García Hernando, and Paul de la Cruz, “The Elderly’s Independent Living in Smart Homes: A Characterization of Activities and Sensing Infrastructure Survey to Facilitate Services Development,” Sensors 15 (2015): 11312–62; Maggie Mort, Celia Roberts, and Blanca Callén, “Ageing with Telecare: Care or Coercion in Austerity?,” Sociology of Health and Illness 35, no. 6 (2013): 799–812; N. M. Barnes, N. H. Edwards, D. A. D. Rose, and P. Garner, “Lifestyle Monitoring—Technology for Supported Independence,” Computing and Control Engineering Journal, August 1998, 169–74.
Ilkka Korhonen, Juha Pärkkä, and Mark Van Gils, “Health Monitoring in the Home of the Future,” IEEE Engineering in Biology and Medicine Magazine, May/June 2003, 66–73.
Kimberly Leonard and Josh Israel, “Telehealth Bill Aims to Expand Health IT Access for Home Care Providers,” Center for Public Integrity, March 22, 2011, https://www.publicintegrity.org/2011/03/22/3688/telehealth-bill-aims-expand-health-it-access-home-care-providers (accessed January 23, 2018).
Stealth Health, http://stealthhealth.co/ (accessed January 23, 2018).
Reminder Rosie, http://www.reminder-rosie.com/ (accessed January 23, 2018).
The Pill Pets are brightly colored, cuddly toys made of silicon with computerized screens that display instructions on taking medication. For the Pill Pets to thrive, their reminders to take medication must be followed; if they are not paid attention, the Pill Pets will become ill and eventually die. Refer to AgeLab, “Pharm Animals and Pill Pets,” http://agelab.mit.edu/pharm-animals-pill-pets (accessed January 23, 2018).
Refer to http://www.gerijoy.com/ (accessed March 19, 2018).
Neilson, “Anti-ageing Cultures, Biopolitics and Globalisation,” 12.
Carolyn Cartier, “From Home to Hospital and Back Again: Economic Restructuring, End of Life, and the Gendered Problems of Place-Switching Health Services,” Social Science and Medicine 56 (2003): 2289–2301; Joan Liaschenko, “The Moral Geography of Home Care,” Advances in Nursing Science 17, no. 2 (1994): 16–26; Lauren Penney, “The Uncertain Bodies and Spaces of Aging in Place,” Anthropology and Aging Quarterly 34, no. 3 (2013): 113–25.
Katz and Marshall, “New Sex for Old,” 12. See also Martha Albertson Fineman, “‘Elderly’ as Vulnerable: Rethinking the Nature of Individual and Societal Responsibility,” Emory Legal Studies Research Paper No. 12-224, June 20, 2012, http://dx.doi.org/10.2139/ssrn.2088159 (accessed January 23, 2018).
Martha B. Holstein and Meredith Minkler, “Self, Society, and the ‘New Gerontology,’” Gerontologist 43, no. 6 (2003): 788; Katz and Marshall, “Is the Functional ‘Normal’?”
David J. Ekerdt, “The Busy Ethic: Moral Continuity between Work and Retirement,” Gerontologist 26, no. 3 (1986): 239–44.
Mykytyn, “Anti-aging Is Not Necessarily Anti-death,” 218–19.
Katz and Marshall, “Is the Functional ‘Normal’?,” 63.
Katz and Marshall, 68–69.
Katz and Marshall, 63.
Katz and Marshall, 58.
Holstein and Minkler, “Self, Society, and the ‘New Gerontology,’” 792, citing Sarah Harper, “Constructing Later Life/Constructing the Body: Some Thoughts from Feminist Theory,” in Critical Approaches to Ageing and Later Life, ed. Anne Jamieson, Sarah Harper, and Christina R. Victor (Buckingham, U.K.: Open University Press, 1997), 167.
Holstein and Minkler, “Self, Society, and the ‘New Gerontology,’” 787.
Courtney Everts Mykytyn, “A History of the Future: Emergence of Contemporary Anti-ageing Medicine,” Sociology of Health and Illness 23, no. 2 (2010): 185.
Nicholas Rose, The Politics of Life Itself, Biomedicine, Power, and Subjectivity in the Twenty-First Century (Princeton, N.J.: Princeton University Press, 2007), 10.
Human Longevity Inc., “Take Control of Your Health with Health Nucleus,” http://www.humanlongevity.com/ (accessed January 23, 2018).
Human Longevity Inc.
Holstein and Minkler, “Self, Society, and the ‘New Gerontology,’” 790, citing Meredith Minkler, “Personal Responsibility for Health? A Review of the Arguments and the Evidence at Century’s End,” Health Education and Behavior 26, no. 1 (1999): 121–40.
Katz and Marshall, “Is the Functional ‘Normal’?,” 64–65.
Brett Neilson, “Globalization and the Biopolitics of Aging,” CR: The New Centennial Review 3, no. 2 (2003): 175.
Holstein and Minkler, “Self, Society, and the ‘New Gerontology,’” 793. Importantly, the discourse of productive aging and third age intersects with and supports an anti-aging industry and relies on ageist insecurities that marginalize old people in gendered ways—e.g., older bodies that are antifeminine or antimasculine are ostracized and subject to social and medical adjustment.
Holstein and Minkler, 793.
Holstein and Minkler, 793.
Holstein and Minkler, 794.
Mykytyn, “Anti-aging Is Not Necessarily Anti-death,” 219.
Céline Lafontaine, “The Postmortal Condition: From the Biomedical Deconstruction of Death to the Extension of Longevity,” Science as Culture 18, no. 3 (2009): 309.
Neilson, “Globalization and the Biopolitics of Aging,” 175.
Biofinancialization here refers to the metrics used to determine economic policies around health and aging.
Emma Whyte Laurie, “Who Lives, Who Dies, Who Cares? Valuing Life through the Disability-Adjusted Life Year Measurement,” Transactions of the Institute of British Geographers 40, no. 1 (2015): 85.
Kaufman, “Making Longevity,” 317.
Ayo Wahlberg and Nikolas Rose, “The Governmentalization of Living,” Economy and Society 44, no. 1 (2015): 60–90.
Wahlberg and Rose.
Katherine E. Kenny, “The Biopolitics of Global Health: Life and Death in Neoliberal Time,” Journal of Sociology 51, no. 1 (2015): 11.
Laurie, “Who Lives, Who Dies, Who Cares?,” 82, citing Sudhir Anand and Kara Hanson, “Disability-Adjusted Life Years: A Critical Review,” Journal of Health Economics 16, no. 6 (1997): 688.
Christopher J. L. Murray, Theo Vos, Rafael Lozano, Mohsen Naghavi, Abraham D. Flaxman, Catherine Michaud, Majid Ezzati et al., “Disability-Adjusted Life Years (DALYs) for 291 Diseases and Injuries in 21 Regions, 1990–2010: A Systematic Analysis for the Global Burden of Disease Study 2010,” Lancet 380, no. 9859 (2012): 2197–2223.
Emma Whyte Laurie importantly notes, “They [DALYs] are ostensibly employed to legitimize intervention rather than justify abandonment”; however, “various aspects of the DALY measurement are highly problematic and deeply rooted within a capitalist thinking that considers health in relation to economic productivity.” See Laurie, “Who Lives, Who Dies, Who Cares?,” 80.
Kenny, “Biopolitics of Global Health,” 9.
Laurie, “Who Lives, Who Dies, Who Cares?,” 76.
David C. Thomasma, “Moving the Aged into the House of the Dead: A Critique of Ageist Social Policy,” Journal of the American Geriatrics Society 37, no. 2 (1989): 170, cited in Kevin Morgan, Gerontology: Responding to an Ageing Society (London: Jessica Kingsley/British Society of Gerontology, 1992), 132.
See, e.g., Morgan, Gerontology.
Henry A. Giroux, “Reading Hurricane Katrina: Race, Class, and the Biopolitics of Disposability,” College Literature 33, no. 3 (2006): 171–96; Giroux, “Violence, Katrina, and the Biopolitics of Disposability,” Theory, Culture, and Society 24, no. 7–8 (2007): 305–9.
Harris, “QALYfying the Value of Human Life,” 108.
S. Lochlann Jain, “The Mortality Effect: Counting the Dead in the Cancer Trial,” Public Culture 22, no. 1 (2010): 89–117.
Kelly Fritsch, “Cripping Neoliberal Futurity: Marking the Elsewhere and Elsewhen of Desiring Otherwise,” Feral Feminisms, no. 5 (2016): 11–26.
Sharon R. Kaufman and Lakshmi Fjord, “Medicare, Ethics, and Reflexive Longevity: Governing Time and Treatment in an Aging Society,” Medical Anthropology Quarterly 25, no. 2 (2011): 1–2.
Sharon R. Kaufman, Janet K. Shim, and Ann J. Russ, “Revisiting the Biomedicalization of Aging: Clinical Trends and Ethical Challenges,” Gerontologist 44, no. 6 (2004): 731.
Janet K. Shim, Ann J. Russ, and Sharon R. Kaufman, “Risk, Life Extension and the Pursuit of Medical Possibility,” Sociology of Health and Illness 28, no. 4 (2006): 485. See also Kaufman and Fjord, “Medicare, Ethics, and Reflexive Longevity”; Sharon R. Kaufman, “Time, Clinic Technologies, and the Making of Reflexive Longevity: The Cultural Work of Time Left in an Ageing Society,” Sociology of Health and Illness 32, no. 2 (2010): 225–37; and Akse Juul Lassen and Michael Anderson, “What Enhancement Techniques Suggest about the Good Death,” Culture Unbound 8 (2016): 104–21.
Shim et al., “Risk, Life Extension,” 486, emphasis added.
Kaufman and Fjord, “Medicare, Ethics, and Reflexive Longevity,” 2.
Kaufman and Fjord, 5.
Shim et al., “Risk, Life Extension,” 497.
On risk discourse, see the late sociologist Ulrich Beck’s work, such as Risk Society: Towards a New Modernity (London: Sage, 1992). Also François Ewald, “Insurance and Risk,” in The Foucault Effect: Studies in Governmentality, ed. Graham Burchell, Colin Gordon, and Peter Miller. 197–210 (Chicago: University of Chicago Press, 1991); Rose, Politics of Life Itself, 70–73; Deborah Lupton, Risk (London: Routledge, 1999); and Ian Hacking, The Taming of Chance (Cambridge: Cambridge University Press, 1990).
“An ICD is a battery-powered device placed under the skin that keeps track of your heart rate. . . . If an abnormal heart rhythm is detected the device will deliver an electric shock to restore a normal heartbeat if your heart is beating chaotically and much too fast.” See the American Heart Association, “Implantable Cardioverter Defibrillator (ICD),” http://www.heart.org/HEARTORG/Conditions/Arrhythmia/PreventionTreatmentofArrhythmia/Implantable-Cardioverter-Defibrillator-ICD_UCM_448478_Article.jsp# (accessed December 19, 2017).
Shim et al., “Risk, Life Extension”; Steve Phurrough, JoAnna Farrell, and Joseph Chin, “Decision Memorandum for Implantable Cardioverter Defibrillators (ICDs),” CAG-00157N, https://www.cms.gov/medicare-coverage-database/details/nca-decision-memo.aspx?NCAId=39&fromdb=true (accessed December 18, 2017); Richard I. Fogel, Andrew E. Epstein, N. A. Mark Estes III, Bruce D. Lindsay, John P. DiMarco, Mark S. Kremers, Suraj Kapa, Ralph G. Brindis, and Andrea M. Russo, “The Disconnect between the Guidelines, the Appropriate Use Criteria, and Reimbursement Coverage Decisions: The Ultimate Dilemma,” Journal of the American College of Cardiology 63, no. 1 (2014): 12–14.
Medtronic, “Hospital and Physician Reimbursement Guide for ICD Implants,” July 2014, http://www.medtronic.com/content/dam/medtronic-com-m/mdt/crdm/documents/july2014-reimburse-guide-icd.pdf (accessed December 18, 2017).
Shim et al., “Risk, Life Extension,” 490–91.
Lassen and Anderson, “What Enhancement Techniques Suggest about the Good Death,” 110.
Harry Moody, cited in Lassen and Anderson, 110–11; Sara Manning Peskin, “The Symptoms of Protracted Dying,” New York Times, October 24, 2017, https://www.nytimes.com/2017/10/24/well/live/the-symptoms-of-protracted-dying.html (accessed December 1, 2017).
Aimee Swartz, “James Fries: Healthy Aging Pioneer,” American Journal of Public Health 98, no. 7 (2008): 1163.
American Psychological Association, “End-of-Life Care Fact Sheet,” http://www.apa.org/pi/aging/programs/eol/end-of-life-factsheet.pdf (accessed December 20, 2017).
By 2008, the system was up to its twenty-fifth version, and there were 999 categories (ending with “ungroupable”). See the Centers for Medicare and Medicaid Services (CMS) listing at https://www.cms.gov/Research-Statistics-Data-and-Systems/Statistics-Trends-and-Reports/MedicareFeeforSvcPartsAB/downloads/DRGdesc08.pdf (accessed December 20, 2017). For the latest DRG categorizations, refer to CMS, “LTC-DRG Files,” https://www.cms.gov/Medicare/Medicare-Fee-for-Service-Payment/LongTermCareHospitalPPS/ltcdrg.html (accessed March 8, 2018).
Alistair M. Preston, “The Birth of Clinical Accounting: A Study of the Emergence and Transformations of Discourses on Costs and Practices of Accounting in U.S. Hospitals,” Accounting, Organizations, and Society 17, no. 1 (1992): 92.
U.S. House of Representatives, Select Committee on Aging, “Sustaining Quality Health Care under Cost Containment,” House Committee Publication 99-499 (Washington, D.C.: Government Printing Office, 1985).
Preston also notes that these changes since 1983 have led to “DRG gaming,” where hospitals protect their financial interests against the government (vying only for the lucrative DRGs); the heightened economic rationality that is restricting care challenges one of the basic tenets of medicine: to act in the best interest of the patient. Hospitals and doctors now need to juggle this ethic against economic cost control. Preston, “Birth of Clinical Accounting,” 95.
Bradford H. Gray, ed., For-Profit Enterprise in Health Care (Washington, D.C.: National Academies Press, 1986), https://www.ncbi.nlm.nih.gov/books/NBK217906/ (accessed March 8, 2018). For an overview of various dimensions of hospital types, accommodations, and occupancy, see Centers for Disease Control and Prevention (CDC), “Hospitals, Beds, and Occupancy Rates, by Type of Ownership and Size of Hospital: United States, Selected Years 1975–2013,” https://www.cdc.gov/nchs/data/hus/2015/089.pdf (accessed March 8, 2018).
Audrey J. Weiss and Anne Elixhauser, “Overview of Hospital Stays in the United States, 2012,” Healthcare Cost and Utilization Project Statistical Brief 180, October 2014, https://www.hcup-us.ahrq.gov/reports/statbriefs/sb180-Hospitalizations-United-States-2012.pdf (accessed December 17, 2017). For 2016 figures, see Becker’s Hospital Review, “60 Things to Know about the Hospital Industry, 2016,” January 14, 2016, https://www.beckershospitalreview.com/lists/50-things-to-know-about-the-hospital-industry-2016.html (accessed March 8, 2018).
It is also important to note that many hospitals are closing and reopening as ambulatory care centers. This is due to high deductibles, better technology, more case management, and shrinking reimbursement from Medicare and Medicaid. See Melanie Evans, “Hospitals Face Closures as ‘a New Day in Healthcare’ Dawns,” Modern Healthcare, February 21, 2015, http://www.modernhealthcare.com/article/20150221/MAGAZINE/302219988 (accessed December 20, 2017). At the same time, many hospitals are expanding into after-hospital care (nursing homes, home care, etc.). In doing so, “hospitals can discharge patients as soon as is medically reasonable, thus minimizing the cost incurred under the hospital DRG, while the patient continues to be revenue-producing in the home care or nursing home setting.” Gray, For-Profit Enterprise in Health Care, 40.
Amal N. Trivedi, Husein Moloo, and Vincent Mor, “Increased Ambulatory Care Copayments and Hospitalizations among the Elderly,” New England Journal of Medicine 362 (2010): 320–28.
This is due to the decline in safety-net hospitals—a category of hospitals that provide a disproportionate level of charity care compared to other facilities. The Patient Protection and Affordable Care Act stipulates that such payments will be reduced over a period of several years. See Becker’s Hospital Review, “50 Things to Know about the Hospital Industry.”
On “social death,” refer to Orlando Patterson, Slavery and Social Death: A Comparative Study (Cambridge, Mass.: Harvard University Press, 1982).
Nancy Ettlinger, “A Relational Approach to an Analytics of Resistance: Towards a Humanity of Care for the Infirm Elderly,” Foucault Studies 23 (2017): 110.
Ettlinger, 116. Also see CDC, “Nursing Home Care,” https://www.cdc.gov/nchs/fastats/nursing-home-care.htm (accessed March 8, 2018).
Phillip C. Aka, Lucinda M. Deason, and Augustine Hammond, “Political Factors and the Enforcement of the Nursing Home Regulatory Regime,” Journal of Law and Health 24, no. 1 (2011): 32.
Aka et al., 31.
Ettlinger, “A Relational Approach to an Analytics of Resistance,” 116.
Katie Thomas, “In Race for Medicare Dollars, Nursing Home Care May Lag,” New York Times, April 14, 2015, https://www.nytimes.com/2015/04/15/business/as-nursing-homes-chase-lucrative-patients-quality-of-care-is-said-to-lag.html (accessed March 8, 2018).
U.S. Department of Justice, “Nursing Home Operator to Pay $48 Million to Resolve Allegations That Six California Facilities Billed for Unnecessary Therapy,” https://www.justice.gov/opa/pr/nursing-home-operator-pay-48-million-resolve-allegations-six-california-facilities-billed (accessed March 8, 2018).
Medford Multicare Center, http://www.medfordmulticare.org/ (accessed December 20, 2017).
Thomas, “In Race for Medicare Dollars.”
Aka et al., “Political Factors,” 15. See also Charles Duhigg, “At Many Homes, More Profit and Less Nursing,” New York Times, September 23, 2007, http://www.nytimes.com/2007/09/23/business/23nursing.html (accessed March 8, 2018).
For more on “post-hospital syndrome,” see Harlan M. Krumholz, “Post-hospital Syndrome—An Acquired, Transient Condition of Generalized Risk,” New England Journal of Medicine 368 (2013): 100–102, http://www.nejm.org/doi/full/10.1056/nejmp1212324 (accessed March 8, 2018).
Ettlinger, “A Relational Approach to an Analytics of Resistance,” 124.
On Obama-era health care reforms related to nursing homes, see Aka et al., “Political Factors,” 28. On the Trump administration’s rolling back of these initiatives, refer to Jordan Rau, “Trump Administration Eases Nursing Home Fines in Victory for Industry,” New York Times, December 24, 2017, https://www.nytimes.com/2017/12/24/business/trump-administration-nursing-home-penalties.html (accessed March 8, 2018).
U.S. Government Accountability Office, “Nursing Homes: Federal Monitoring Surveys Demonstrate Continued Understatement of Serious Care Problems and CMS Oversight Weakness,” GAO-08-517, May 2008, https://www.gao.gov/new.items/d08517.pdf (accessed March 8, 2018).
See “Nursing Home Quality: CMS Should Continue to Improve Data and Oversight,” October 30, 2015, https://www.gao.gov/products/GAO-16-33 (accessed January 20, 2017).
National Hospice and Palliative Care Organization, “Facts and Figures: Hospice Care in America,” 2017, https://www.nhpco.org/sites/default/files/public/Statistics_Research/2017_Facts_Figures.pdf (accessed April 30, 2019).
Norma Jean Dawson, “Need Satisfaction in Terminal Care Settings,” Social Science and Medicine 32, no. 1 (1991): 83–87; Laura Hanson, Marion Danis, and Joanne Garrett, “What Is Wrong with End-of-Life Care? Opinions of Bereaved Family Members,” Journal of the American Geriatrics Society 45, no. 11 (1997): 1339–44; Joan M. Teno, B. R. Clarridge, V. Casey, L. C. Welch, T. Wetle, R. Shield, and V. Mor, “Family Perspectives on End-of-Life Care at the Last Place of Care,” Journal of the American Medical Association 291, no. 1 (2004): 88–93.
David J. Casarett and Timothy E. Quill, “‘I’m Not Ready for Hospice’: Strategies for Timely and Effective Hospice Discussions,” Annals of Internal Medicine 146, no. 6 (2007): 443–49.
Stephen R. Connor, Bruce Pyenson, Kathryn Fitch, Carol Spence, and Kosuke Iwasaki, “Comparing Hospice and Nonhospice Patient Survival among Patients Who Die within a Three-Year Window,” Journal of Pain and Symptom Management 33, no. 3 (2007): 238–46.
Julia Lawton, “Contemporary Hospice Care: The Sequestration of the Unbounded Body and ‘Dirty Dying,’” Sociology of Health and Illness 20, no. 2 (1998): 123.
Mark Betancourt, “The Devastating Process of Dying in America without Insurance: What Do People Do When They Can’t Afford End-of-Life Care?,” Nation, June 20, 2016, https://www.thenation.com/article/the-devastating-process-of-dying-in-america-without-insurance/ (accessed March 8, 2018). On racial and ethnic disparities in hospice usage, see Lilian Liou Cohen, “Racial/Ethnic Disparities in Hospice Care: A Systematic Review,” Journal of Palliative Medicine 11, no. 5 (2008): 763–68.
Betancourt, “Devastating Process of Dying in America.” This growth can be in part attributed to the rollout of the Medicare Hospice Benefit in 1982, which continued the momentum of hospice care expansion.
Refer to the CDC National Center for Health Statistics on hospice care agencies: https://www.cdc.gov/nchs/fastats/hospice-care.htm (accessed March 8, 2018); Joshua E. Perry and Robert C. Stone, “In the Business of Dying: Questioning the Commercialization of Hospice,” Journal of Law, Medicine, and Ethics 39, no. 2 (2011): 224–34.
U.S. Department of Justice, “Chemed Corp. and Vitas Hospice Services Agree to Pay $75 Million to Resolve False Claims Act Allegations,” October 30, 2017, https://www.justice.gov/opa/pr/chemed-corp-and-vitas-hospice-services-agree-pay-75-million-resolve-false-claims-act (accessed March 8, 2018).
Perry and Stone, “In the Business of Dying,” 228.
Mykytyn, “Anti-aging Is Not Necessarily Anti-death,” 218.
Neilson, “Globalization and the Biopolitics of Aging,” 179; Matthew Sparke, “Austerity and the Embodiment of Neoliberalism as Ill-Health: Towards a Theory of Biological Sub-citizenship,” Social Science and Medicine 187 (2017): 287–95.
Mykytyn, “Anti-aging Is Not Necessarily Anti-death,” 222.
John A. Vincent, “Science and Imagery in the ‘War on Old Age,’” Aging and Society 27, no. 6 (2007): 941–61.
Neilson, “Anti-ageing, Cultures, Biopolitics and Globalisation,” 160.
Kaufman et al., “Revisiting the Biomedicalization of Aging,” 731.
Cooper, “Resuscitations,” 3.
AgeLab, http://agelab.mit.edu/agnes-age-gain-now-empathy-system (accessed January 13, 2018).
Independent Lens, http://www.pbs.org/independentlens/maggiegrowls/panthers.html (January 13, 2018).
Gray Panthers, http://www.graypanthersnyc.org/ (accessed January 13, 2018).
The Diverse Elders Coalition (DEC) is supported by five national organizations representing millions of older people throughout the United States: the National Asian Pacific Center on Aging, National Hispanic Council on Aging, National Indian Council on Aging, Sage | Advocacy and Services for LGBT Elders, and Southeast Asia Resource Action Center.
Diverse Elders Coalition, https://www.diverseelders.org/ (accessed February 9, 2018).
“Diverse Elders Coalition Supports Inclusive Immigration Reform,” https://www.diverseelders.org/what-to-know/immigration-reform/ (February 9, 2018).
Ann Brenoff, “Why Communes May Be the New Retirement Home,” Huffington Post, September 10, 2015, https://www.huffingtonpost.com/entry/communes-may-be-the-new-retirement-home_us_55e47693e4b0b7a963399447 (accessed February 9, 2018).
Teresa Mears, “How Baby Boomers Are Creating Their Own Retirement Communities,” U.S. News, April 20, 2015, https://money.usnews.com/money/retirement/articles/2015/04/20/how-baby-boomers-are-creating-their-own-retirement-communities (accessed February 9, 2018). Cohousing spread in part due to the book by Kathryn M. Mccamant, Charles Durrett, Ellen Hertzman, and Charles W. Moore, Cohousing: A Contemporary Approach to Housing Ourselves (1988; repr., Berkeley, Calif.: Ten Speed Press, 1994).
Anna Spinner, “Peace, Love, and Social Security: Baby Boomers Retire to the Commune,” Atlantic, November 21, 2011, https://www.theatlantic.com/national/archive/2011/11/peace-love-and-social-security-baby-boomers-retire-to-the-commune/248583/ (accessed February 9, 2018).
Linda Abbit, “Urban Cohousing the Babayaga Way,” Senior Planet, March 6, 2016, https://seniorplanet.org/senior-housing-alternatives-urban-cohousing-the-babayaga-way/ (accessed February 10, 2018).
Kimberley Fowler, “Shared Housing for Seniors,” Senior Living (blog), February 27, 2017, https://www.aplaceformom.com/blog/2-27-17-shared-housing-for-seniors/ (accessed February 10, 2018).
Ellen Ryan, “20 Questions and Answers about Cohousing,” AARP, January 2016, https://www.aarp.org/livable-communities/housing/info-2016/questions-answers-about-cohousing.html (accessed February 9, 2018); Cohousing Association of the United States, “Aging in Cohousing,” http://www.cohousing.org/aging (accessed February 10, 2018).
Golden Girls Network, https://goldengirlsnetwork.com/ (accessed February 10, 2018).
Abbit, “Urban Cohousing the Babayaga Way.”
“Baba Yaga Place—Toronto,” http://www.babayagaplace.ca/ (accessed February 10, 2018).
Abbit, “Urban Cohousing the Babayaga Way”; “Baba Yaga Place—Toronto.”
“The Fellowship Community: An Inter-generational Care Community,” http://www.fellowshipcommunity.org/ (accessed February 10, 2018).