Medicine

New Books in April

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Curling up on the couch with a great book is an excellent way to practice social distancing this month. All these titles will deliver before our sale ends on May 1, so check our website regularly. You can save 50% on all in-stock titles with coupon SPRING50

Tyler Bickford traces the dramatic rise of the “tween” pop music industry in Tween Pop, showing how it marshaled childishness as a key element in legitimizing children’s participation in public culture.

The contributors to Playing for Keeps examine the ways in which musical improvisation can serve as a way to negotiate violence, trauma, systemic inequality, and the aftermaths of war and colonialism. This volume is edited by Daniel Fischlin and Eric Porter.

John F. Szwed’s Space is the Place is the definitive biography of Sun Ra—composer, keyboardist, bandleader, philosopher, entrepreneur, poet, self-proclaimed extraterrestrial from Saturn, and a founder of Afrofuturism. We are pleased to be bringing this classic back into print with a new preface.

In Vital Decomposition, Kristina M. Lyons presents an ethnography of human-soil relations in which she follows state soil scientists and peasant farmers in Colombia’s Putumayo region, showing how their relationship with soil is key to caring for the forest and growing non-illicit crops in the face of violence, militarism, and environmental destruction.

Micha Rahder explores how multiple ways of knowing the forest of Guatemala’s Maya Biosphere Reserve shape conservation practice, local livelihoods, and landscapes in An Ecology of Knowledges.

In Relations, Marilyn Strathern provides a critical account of anthropology’s key concept of relation and its usage and significance in the English-speaking world, showing how its evolving use over the last three centuries reflects changing thinking about knowledge-making and kin-making.

In Virtual Pedophilia, Gillian Harkins traces the genealogy of the transformation of cultural construction of the pedophile as a social outcast into the image of normative white masculinity from the 1980s to the present, showing how his “normalcy” makes him hard to identify and stop.

In A People’s History of Detroit, Mark Jay and Philip Conklin use a Marxist framework to tell a sweeping story of Detroit from 1913 to the present, outlining the complex socio-political dynamics underlying major events in Detroit’s past, from the rise of Fordism and the formation of labor unions to deindustrialization and the city’s recent bankruptcy.

In Revolution and Disenchantment, Fadi A. Bardawil explores the hopes for and disenchantments with Marxism-Leninism in the writings and actions of revolutionary intellectuals within the 1960s Arab New Left.

In Tehrangeles Dreaming, Farzaneh Hemmasi draws on ethnographic fieldwork in Los Angeles and musical and textual analysis to examine how the pop music, music videos, and television made by Iranian expatriates express modes of Iranianness not possible in Iran.

The Lonely Letters is an epistolary blackqueer critique of the normative world in which Ashon T. Crawley meditates on the interrelation of blackqueer life, sounds of the black church, theology, mysticism, and the potential for platonic and erotic connection in a world that conspires against blackqueer life.

Drawing on Whitman and Adorno, Morton Schoolman proposes aesthetic education through film as a way to redress the political violence inflicted on difference society constructs as its racialized, gendered, Semitic, and sexualized other in A Democratic Enlightenment.

In Kwaito Bodies, Xavier Livermon examines the cultural politics of the youthful black body in South Africa through the performance, representation, and consumption of Kwaito—a style of electronic dance music that emerged following the end of apartheid.

Reflecting on the experience, philosophy, and practice of Latin American indigenous and Afro-descendant activist-intellectuals who mobilize to defend their territories from large-scale extraction, Arturo Escobar shows in Pluriversal Politics how the key to addressing planetary crises is the creation of the pluriverse—a world of many epistemological and ontological worlds.

The contributors to AIDS and the Distribution of Crises outline the myriad ways that the AIDS pandemic exists within a network of varied historical, overlapping, and ongoing crises borne of global capitalism and colonial, racialized, and gendered violence. This collection is edited by Jih-Fei Cheng, Alexandra Juhasz, and Nishant Shahani. It is currently available to read free online as part of our Navigating the Threat of Pandemic syllabus.

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Joshua Neves on the Coronavirus (COVID-19), Anti-Chinese Racism, and the Politics of Underglobalization

Neves, Joshua photoJoshua Neves, author of Underglobalization:
Beijing’s Media Urbanism and the Chimera of Legitimacy
, is Associate Professor and Canada Research Chair, Film Studies at Concordia University and coeditor of Asian Video Cultures, also published by Duke University Press. He wrote this post on February 21, 2020 and updated the statistics today, March 11.

In the 2018-19 flu season, the United States’ Center for Disease Control (CDC) estimated that 16.5 million Americans saw a health care provider for their illness, 490,600 people were hospitalized, and 34,200 people died from influenza. Such data helps us to temper recent panic about the coronavirus, contagion narratives, and the repressive Chinese state. 

To be sure, the strict management of information and party-state bureaucracy have plagued China’s response to the virus. My aim here is not to downplay what are very grave challenges to public health, but rather to turn attention to the ways the viral outbreak has also been swollen by frenzied news and social media around the world. Among the many responses in North America and Europe, for example, is a resurgent anti-Chinese racism. This includes suspicions about exotic animals and racialized ideas about sickness and disease, as well as alarm about surgical mask shortages, government cover ups, and entire cities under quarantine. As a recent US headline puts it, “First the media sold you overblown fears. Now it’s selling false comfort.”

But there is little new in this hysteria over China as a breeding ground for pandemics. From counterfeit medicine to authoritarian capitalism, China plays a complicated role in stories about the world system. On the one hand, it’s laboring population serves as factory to the world and has sustained the global economy through stagnation and crisis. It both produces the world’s best known things and is derided as a menial laborer or copycat—and not, that is, a designer. A major theme in recent news coverage centers on profits lost to factory closures. In many such stories, concerns about the well-being of migrant workers, among others, seems limited to their inability to get to work. On the other hand, even while China co-creates what we have come to know as globalization, its ambition and the challenges it poses to the Washington Consensus have led many to see the country as a global villain. Alongside Russia, Iran, etc., the PRC increasingly fills an imaginary void in post-Cold War geopolitics. It is the “other” that “we” organize our anger or fear around. 

What interests me about the tensions framing the COVID-19 outbreak is that China is at once understood to be inside and outside of the world or proper society of nations. It is both a prime mover and sickly underminer. This contradiction—including mistrust, intolerance, fear—must be tied to a history of anti-Chinese racism in North America and elsewhere. Not surprisingly, the current “yellow peril” is once again linked to the exploitation of Chinese workers, as well as a deep suspicion of these same people’s motives and lifeworlds. It highlights the inequality of global supply chains—a current logic of racialized capitalism—which seek to move things in specific directions and keep everyone in their place. It is this sense of global order that the virus ignores with its potential to spread where it should not. Contagion thus not only refers to the unruliness of new flu strains, but to the new mobilities of Chinese people, products, and technologies. The latter includes US attempts to block the Chinese company, Huawei, from building 5G infrastructure around the world. Officials claim that Chinese built networks will allow Beijing to infiltrate critical telecom infrastructure, making them insecure and threatening. These same reports rely on language that could just as well describe panic about the infectivity of influenza. Per Vice President Mike Pence, “We cannot ensure the defense of the West if our allies grow dependent on the East.”

The point of highlighting such tensions is not to bracket the very real problems posed by the People’s Republic of China or its vision of the future. But it is to refuse sweeping and prejudicial assessments of China and the Chinese, which inform insidious racisms by tethering ideas about counterfeits, censorship, exotic animals, the flu, and much more, to particular bodies. Put simply, these critiques are widespread, confused, epidemic—and demand more nuanced attention from journalists, scholars, and publics. What remains undigested by routine critiques of China, and is once again brought into relief by the recent outbreak of the outbreak narrative, is how smug dismissals buttress troubling ideas about the munificent “West” and the “free world.” This is one of the most menacing and normalized aspects of anti-Chinese racism in the North Atlantic. It locates viral contagion in Asian cities and populations, naming them as external threats, thereby consolidating a violent clash of civilization understanding of the earth. Here is safe; there is toxic.

It is important to add that, contrary to Euro-American assumptions about Chinese repression and citizen compliance, political dissent is endemic and visible across the PRC. For example, in Social Protests and Contentious Authoritarianism in China, political scientist Xi Chen describes both the dramatic rise and routinization of social protest in China and also how, “beneath the surface of noise and anxiety,” China’s political system remains stable. This is a complex political formation and no doubt differs from the imagination of protest in places like the US. But these differences notwithstanding, it is important to understand that protest and dissensus are frequent responses to life in contemporary China—and many Chinese citizens are “more than ready to blame the Communist Party for suppressing public health information and closing ranks against the people.” What is distinct, and marks an increasingly global condition, is that such protests are not made within formal civil society. Instead they are quasi- or il-legal, and suggest new modes of political society. Consider the January 2020 essay, “When Fury Becomes Fear,” from the outspoken former academic and critic, Xu Zhangrun. In searing prose, Xu argues that the current epidemic sounds a “viral alarm” and “has revealed the rotten core of Chinese governance.” See Geremie R. Barmé’s translation of Xu’s essay here, a Wuhan diary here, a typical report about netizen responses here, or the Sinophobia tracker here. What matters about such examples, is that they refuse the self-righteous politics of pity—where, for example, Americans are free and Chinese are controlled—and instead demands that we re-examine the workings of popular politics under globalization, which includes China and the so-called “West.”

Screen Shot 2020-02-21 at 12.42.46 PMAs I write, 4,379 people have died from the coronavirus and nearly 119,108 cases have been confirmed. Currently over 1000 deaths have been reported outside of China, with Wuhan, Hubei Province, still the most affected area. While details vary, reports indicate that lockdowns and curfews affect hundreds of millions Chinese citizens. The strictest rules, per the South China Morning Post, keep 60 million Hubei residents from leaving their homes. Further coverage suggests that the epidemic may now have peaked, as its spread slows in China, though others note that Japan is now a hotbed for the virus, with new cases also confirmed in the Philippines, South Korea, Iran, Egypt, and others. I linger on the current flu epidemic, stories about its (mis)management, and its Asian hosts and itineraries because they bring into relief a range of issues that are critical to what I call underglobalization

978-1-4780-0805-7When writing Underglobalization, I struggled to make sense of the contradictory and often racist understandings of China that co-exist in much official and popular discourse. As above, I was struck by the way that China is both dismissed as a fake, parasite or outlier nation and, at the same time, is critical to both the global economy and institutions, and to the everyday experience of the world. This paradox brings into relief deep structural conflicts over what constitutes political, economic, and social legitimacy in the present and future. Against such antagonisms, Underglobalization charts how a wide range of social actors underperform or refuse to implement the specific procedures and protocols required by globalization at different scales. Put differently, what international law (like the TRIPS Agreement) identifies as illegal must also be understood, in many contexts, to be locally valid. One important ramification of this claim is the recognition that contemporary global dynamics are shaped by increasing tensions between (il)legality and (il)legitimacy. Most simply the book asks: what happens when legal contracts around the world—including rights, civil society and citizenship—fail or become dangerous, and on what ground are political relationships reclaimed and sustained? 

Save 30% on the paperback edition of Joshua Neves’ Underglobalization using the coupon code E20NEVES and download the introduction here.

 

New Books in January

If one of your resolutions for 2020 is to read more books, we’ve got you covered. Ring in the new year with these captivating new releases!

In Beneath the Surface, Lynn M. Thomas constructs a transnational history of skin lighteners in South Africa and beyond, theorizing skin and skin color as a site for antiracist struggle and lighteners as a technology of visibility that both challenges and entrenches racial and gender hierarchies.

Weaving U.S. history into the larger fabric of world history, the contributors to Crossing Empires de-exceptionalize the American empire, placing it in a global transimperial context as a way to grasp the power relations that shape imperial formations. This collection is edited by Kristin L. Hoganson and Jay Sexton.

Engaging contemporary photography by Sally Mann, Lorna Simpson, Carrie Mae Weems, and others, Shawn Michelle Smith traces how historical moments come to be known photographically and the ways in which the past continues to inhabit, punctuate, and transform the present through the photographic medium in Photographic Returns.

Spanning the centuries between pre-contact indigenous Haiti to the aftermath of the 2010 earthquake, the selections in The Haiti Reader introduce readers to Haiti’s dynamic history and culture from the viewpoint of Haitians from all walks of life. This volume is edited by Laurent Dubois, Kaiama L. Glover, Nadève Ménard, Millery Polyné, and Chantalle F. Verna.

The contributors to Futureproof (edited by D. Asher Ghertner, Hudson McFann, and Daniel M. Goldstein) examine the affective and aesthetic dimensions of security infrastructures and technology with studies ranging from Jamaica and Jakarta to Colombia and the US-Mexico border.

Examining abjection in a range of visual and material culture, the contributors to Abjection Incorporated move beyond critiques of abjection as a punitive form of social death to theorizing how it has become a means to acquire political and cultural capital in the twenty-first century. This volume is edited by Maggie Hennefeld and Nicholas Sammond.

Margaret E. Dorsey and Miguel Díaz-Barriga argue that border wall construction along the U.S.–Mexico border manifests transformations in citizenship practices that are aimed not only at keeping migrants out but also enmeshing citizens into a wider politics of exclusion in Fencing in Democracy.

In Politics of Rightful Killing, Sima Shakhsari analyzes the growth of Weblogistan—the online and real-life transnational network of Iranian bloggers in the early 2000s—and the ways in which despite being an effective venue for Iranians to pursue their political agendas, it was the site for surveillance, cooptation, and self-governance.

In Invisibility by Design, Gabriella Lukács traces how young Japanese women’s unpaid labor as bloggers, net idols, “girly” photographers, online traders, and cell phone novelists was central to the development of Japan’s digital economy in the 1990s and 2000s.

Presented in the context of the nonprofit arts collective More Art’s fifteen-year history, and featuring first-person testimony, critical essays, and in-depth documentary materials, More Art in the Public Eye is an essential, experiential guide to the field of socially engaged public art and its increasing relevance. This volume is edited by Micaela Martegani, Jeff Kasper, and Emma Drew, and we are distributing it for More Art.

Shana L. Redmond traces Paul Robeson’s continuing cultural resonances in popular culture and politics in Everything Man, showing how he remains a vital force and presence for all those he inspired.

In The Complete Lives of Camp People, Rudolf Mrázek presents a sweeping study of the material and cultural lives of internees of two twentieth-century concentration camps and the multiple ways in which their experiences speak to and reveal the fundamental logics of modernity.

In Avian Reservoirs, Frédéric Keck traces how the anticipation of bird flu pandemics has changed relations between birds and humans in Hong Kong, Singapore, and Taiwan, showing that humans’ reliance on birds is key to mitigating future pandemics.

Collecting texts from all corners of the world that span antiquity to the present, The Ocean Reader (edited by Eric Paul Roorda) charts humans’ relationship to the ocean, treating it as a dynamic site of history, culture, and politics.

The contributors to Blue Legalities attend to the seas as a legally and politically conflicted space to analyze the conflicts that emerge where systems of governance interact with complex geophysical, ecological, economic, biological, and technological processes. This collection is edited by Irus Braverman and Elizabeth R. Johnson.

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New Books in July

Our Spring 2019 season may be drawing to a close, but we’ve got some exciting new titles this month to help keep your summer reading in full swing. Check out our new releases for July!

HoweBoyerTogetherCymene Howe and Dominic Boyer have written a duograph subtitled “Wind and Power in the Anthropocene.” In Ecologics, Cymene Howe traces the complex relationships between humans, nonhuman beings and objects, and geophysical forces that shaped the Mareña Renovables project in Oaxaca, Mexico, which had it been completed, would have been Latin America’s largest wind power installation. In Energopolitics, Dominic Boyer examines the politics of wind power and how it is shaped by myriad factors—from the legacies of settler colonialism and indigenous resistance to state bureaucracy and corporate investment—while outlining the fundamental impact of energy and fuel on political power. The two books can be read together or separately and are available for purchase as a set at a special price.

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In Blood Work, Janet Carsten traces the multiple meanings of blood as it moves from donors to labs, hospitals, and patients in Penang, Malaysia, showing how those meanings provide a gateway to understanding the social, political, and cultural dynamics of modern life.

Leah Zani considers how the people and landscape of Laos have been shaped and haunted by the physical remains of unexploded ordnance from the CIA’s Secret War in Bomb Children.

Florence Bernault retells the colonial and postcolonial history of present-day Gabon from the late nineteenth century to the present in Colonial Transactions, showing how colonialism shaped French and Gabonese obsessions about fetish, witchcraft, and organ trafficking for ritual murders.

978-1-4780-0467-7_prIn The Uncaring, Intricate Worldedited by Todd Meyers, anthropologist Pamela Reynolds shares her fieldwork diary from her time spent in Zimbabwe’s Zambezi valley during the 1980s, in which she recounts the difficulties, pleasures, and contradictions of studying the daily lives of the Tonga people three decades after their forced displacement.

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New Books in May

Jump-start your summer reading with one of our new titles this May!

In Coral Empire Ann Elias traces the history of two explorers whose photographs and films of tropical reefs in the 1920s cast corals and the sea as an unexplored territory to be exploited in ways that tied the tropics and reefs to colonialism, racism, and the human domination of nature.

The contributors to Remaking New Orleans, edited by Thomas Jessen Adams and Matt Sakakeeny, challenge the uncritical acceptance of New Orleans-as-exceptional narratives, showing how they flatten the diversity, experience, and culture of the city’s residents and obscure other possible understandings.

The ChasersRenato Rosaldo’s new prose poetry collection, The Chasers, shares his experiences and those of his group of twelve Mexican-American Tucson High School friends known as the Chasers as they grew up, graduated, and fell out of touch, conveying the realities of Chicano life on the borderlands from the 1950s to the present.

In Queering Black Atlantic Religions Roberto Strongman examines three Afro-diasporic religions—Hatian Vodou, Cuban Lucumí/Santería, and Brazilian Candomblé—to demonstrate how the commingling of humans and the divine during trance possession produce subjectivities whose genders are unconstrained by biological sex.

Written in 1937, published in Spanish in 1973, and appearing here in English for the first time, Freddy Prestol Castillo’s novel You Can Cross the Massacre on Foot is one of the few accounts of the 1937 massacre of tens of thousands of Haitians living in the Dominican Republic.

Book Reports

In Book Reports, a generous collection of book reviews and literary essays, rock critic Robert Christgau shows readers a different side to his esteemed career with reviews of books ranging from musical autobiographies, criticism, and histories to novels, literary memoirs, and cultural theory.

The contributors to From Russia with Code, edited by Mario Biagioli and Vincent Antonin Lépinay, examine Russian computer scientists, programmers, and hackers in and outside of Russia within the context of new international labor markets and the economic, technological, and political changes in post-Soviet Russia.

In Camp TV Quinlan Miller reframes American television history by tracing a camp aesthetic and the common appearance of trans queer gender characters in both iconic and lesser known sitcoms throughout the 1950s and 1960s.

The coauthors of Decolonizing Ethnography integrate ethnography with activist work in a New Jersey center for undocumented workers, showing how anthropology can function as a vehicle for activism and as a tool for marginalized people to theorize their own experiences.

In Work! Elspeth H. Brown traces modeling’s history from the advent of photographic modeling in the early twentieth century to the rise of the supermodel in the 1980s, showing how it is both the quintessential occupation of a modern consumer economy and a practice that has been shaped by queer sensibilities.

In Figures of Time Toni Pape examines contemporary television that often presents a conflict-laden conclusion first before relaying the events that led up to that inevitable ending, showing how this narrative structure attunes audiences to the fear-based political doctrine of preemption—a logic that justifies preemptive action to nullify a perceived future threat.

In Anti-Japan Leo T. S. Ching traces the complex dynamics that shape persisting negative attitudes toward Japan throughout East Asia, showing how anti-Japanism stems from the failed efforts at decolonization and reconciliation, the U.S. military presence, and shifting geopolitical and economic conditions in the region.

The Cuba Reader

Tracking Cuban history from 1492 to the present, this revised and expanded second edition of The Cuba Reader presents myriad perspectives on Cuba’s history, culture, and politics, including a new section that explores the changes and continuities in Cuba since Fidel Castro stepped down from power in 2006.

The Fernando Coronil Reader, a posthumously published collection of anthropologist Fernando Coronil’s most important work, highlights his deep concern with the global South, Latin American state formation, theories of nature, empire and postcolonialism, and anthrohistory as an intellectual and ethical approach.

The extensively updated and revised third edition of the bestselling Social Medicine Reader (Volume I and Volume II) provides a survey of the challenging issues facing today’s health care providers, patients, and caregivers with writings by scholars in medicine, the social sciences, and the humanities. It will be a great addition to courses in public health, medicine, nursing, and more.

Catherine Waldby traces how the history of the valuing of human oocytes—the reproductive cells specific to women—intersects with the biological and social life of women in her new book The Oocyte Economy.

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Poem of the Week

Comfort Measures OnlyApril is National Poetry Month, so we are offering a poem each Monday for the next four weeks. Today’s poem is from Rafael Campo’s latest book, Comfort Measures Only: New and Selected Poems, 1994-2016. Campo, a physician, writes from his work and life experience with great empathy. Martin Espada says, “The luminous language and the luminous vision offer proof that poetry, too, is a healing art, that storytelling is medicinal. In these times, we need poets of eloquent empathy more than ever, and there is no poet more eloquent or empathetic than Rafael Campo.”

As We Die

My parents gripe about their health. I think
about when I was young, and tried to force
from them an explanation of — what else
could it have been, but death? Back then, the ink

that clotted in my mother’s brush was black
as my ungrateful, doubting soul; my father’s
huge plush armchair, tilted slightly back, offered
what seemed eternal rest. Their talk is bleak,

their diverticulosis like a pit
that swallows them, their heart disease an ache
these old emotions only aggravate.
I guess I look to them as giants yet,

immortals who know secrets I cannot.
My father, hard of hearing now, reclines
a little farther back; her face now lined
with years of pain, my mother jabs at knots

of garish sunflowers, pretending we
might yet avoid the conversations that
have made their marks on us. Not what I thought —
past death, at last, dreams keep us perfectly.

Rafael Campo is the author of six books of poetry with Duke University Press. He is Associate Professor of Medicine at Harvard Medical School.

New article looks at the rise and fall of Medicare’s Independent Payment Advisory Board

ddjhppl_42_3“Technocratic Dreams, Political Realities: The Rise and Demise of Medicare’s Independent Payment Advisory Board,” an article by Jonathan Oberlander and Steven B. Spivack in the Journal of Health Politics, Policy and Law (volume 43, issue 3), offers a groundbreaking, in-depth look at the troubled history of the Independent Payment Advisory Board (IPAB), enacted as part of the 2010 Patient Protection and Affordable Care Act (PPACA) and repealed in February 2018 when President Donald Trump signed the Bipartisan Budget Act of 2018.

This article addresses technocracy and healthcare through IPAB, a board of healthcare experts hailed for its innovation and designed to formulate Medicare policy recommendations based on evidence and reason rather than politics. Authors Oberlander and Spivack explore why Congress initially enacted IPAB, how we understand its broad appeal to the health policy community, and why IPAB failed to live up to its original hype and remained in political purgatory, paralyzed by controversy and partisanship.

Most health policy experts supported IPAB. The board was an ambitious way to combat the influence of interest groups and the health care industry on Medicare policy. It was also seen as an antidote to legislative inertia and Congress’s inability to manage Medicare. Experts, as well as some members of Congress, agreed that lawmakers could not make difficult decisions about Medicare and envisioned the board as an instrument of health services research and congressional self control. After the board’s establishment, industry groups attacked it, while many Republicans and some Democrats criticized IPAB and supported its repeal. Instead of realizing its aspirations, the board was mired in irrelevance. Prior to its repeal, IPAB existed as a shell under a presidential administration opposed to its existence.

“IPAB’s brief, troubled history offers a cautionary tale about the role of evidence, expertise, and independent panels in US health policy making,” Oberlander and Spivack write. “IPAB’s establishment reflected good intentions: to restructure Medicare governance so that program policy making was driven more by evidence and less by interest group pressures; to compel policy makers to consider and ultimately make difficult choices in Medicare reform; to prevent Congress from micromanaging and mismanaging Medicare; to ensure that, if Congress did not act, steps were still taken to restrain Medicare spending; and to create safeguards against excessive spending. Yet the aspirations to rationalize Medicare through IPAB have floundered against political realities.”

For more information regarding the Journal of Health Politics, Policy and Law, please visit dukeupress.edu/jhppl.

Read the full article here.

Read To Respond: Feminism and Women’s Rights


R2R final logoOur “Read to Respond” series addresses the current climate of misinformation by highlighting articles and books that encourage thoughtful, educated debate on today’s most pressing issues. This post focuses on feminism and women’s rights with articles tackling topics from abortion laws, maternity leave, Islamic feminism, and more. Read, reflect, and share these resources in and out of the classroom to keep these important conversations going.

Feminism and Women’s Rights

These articles are freely available until December 15, 2017. Follow along with the series over the next several months and share your thoughts with #ReadtoRespond.

Personhood Is a Weapon by Eli Clare

Today’s post is an excerpt from Brilliant Imperfection: Grappling with Cure by Eli Clare, with an introduction by the author.

In this political moment as hate violence is on the rise, Trump is trying to ban Muslim refugees from the country, and the Attorney General has blamed disabled students for the lack of civility and disciplinbrilliant-imperfection-covere in public schools; so many groups of marginalized peoples are being treated as unworthy and disposable, essentially denied full personhood. The following meditation on personhood is excerpted from my newly released book, Brilliant Imperfection: Grappling with Cure. I wrote it thinking about white disabled woman Terri Schiavo, who died over a decade ago after a well-publicized and protracted legal struggle over ending her life. But I could as easily have been writing about significantly disabled Black lesbian teenager Jerika Bolan, who after expressing a desire to die wasn’t provided counseling and community support. Rather she was allowed to commit medically sanctioned suicide six months ago. Or I could have written about the unnamed Salvadoran asylum seeker, who in mid-February collapsed at a Texas ICE detention center, was taken to a hospital, diagnosed with a brain tumor, and then in the midst of treatment forcibly taken back to the detention center. If Jerika Bolan had been granted full personhood, she’d still be alive; if the Salvadoran asylum seeker had been granted full personhood, she wouldn’t be locked up in a detention center. More than ever, I believe personhood can be used as a weapon.

Some of us are granted personhood as our birthright, but others are required to prove and defend it every day. And when we fail this perverse test, we’re in trouble. Listen. I want us to remember Terri Schiavo. Debates about her raged in the news in 2004 and 2005.

Whatever happens after we die, our body-minds composting back to earth and air, I hope it’s more peaceful than Terri Schiavo’s last few days as she died of dehydration. Everyone — her parents, her husband, her doctors, the media — had an opinion about her and the feeding tube that had just been removed from her stomach.

She was a white woman who collapsed one day, her body-mind changing radically in a matter of minutes as oxygen stopped flowing to her brain and then started again. Some say she lost her ability to communicate, to think, to feel. Or perhaps we lost our capacity to listen. We’ll never know what floated beneath her skin. I want us to mourn for her.

Pundits and reporters, activists and scholars have written about her endlessly. I don’t know why I’m adding to their pile of words, except my memory of her won’t leave me alone.

She was a heterosexual woman whose husband decided she’d rather die than be disabled. Her hands curled, stiffened, joints freezing into contraction. He asserted his patriarchal ownership, refusing to let nurses slide rolled towels into her hands to help loosen her muscles. Nor would he allow them to teach her to swallow again, even though there was every sign that she could. He spent all his court-awarded settlement money on lawyers rather than care, comfort, and assistive technology. What words or fluttering images did she hold in her muscles and bones?

So many people surrounding Terri Schiavo assumed that she knew and felt nothing. Over and over again neurologists, journalists, judges made decisions about her body-mind based on the beliefs that language and self-awareness make us worthy, that death is better than disability, that withdrawing the basic human rights of food and water can be acts of compassion.

I could ponder self-consciousness, spiritual connection, and the divide between human and nonhuman. I could argue with the bioethicists who separate humanness from personhood, declaring pigs and chimpanzees to have more value than infants and significantly disabled people. But really, I’m not interested. I want us to rage for her.

She was a woman living in a hospital bed, referred to as a vegetable more than once. Did she lie in a river of shadow and light, pressure and sound? That too, we will never know. When she died, did we call her name?

Body-minds have value. Certainly I mean our own human selves, but I also mean heron, firefly, weeping willow. I mean dragonfly, birch, barn swallow. I mean goat and bantam rooster, mosquito and wood frog, fox and vulture — the multitude of beings that make home on this planet. I mean all body-minds, regardless of personhood.

She appeared to track the motion of balloons across her hospital room and grinned lopsidedly into the camera. Her life hung between a husband who said one thing and parents who said another, between legal pronouncements and diagnostic judgments. Do we remember her? I don’t mean the editorials, the pro-life versus pro-choice rhetoric, the religious and secular arguments, the political protest and vigil staged outside her hospice, the last-minute drama as Florida’s governor Jeb Bush and the U.S. Congress tried to intervene. I mean: do we remember her?

Too many of us acted as if Terri Schiavo’s body-mind stopped being her own. Depending on who we were and what stake we had in her life or death, we projected our fear, belief, hope, disgust, love, certainty onto her.

I’m trying to say that life and death sometimes hangs on an acknowledgement of personhood. Trying to say that personhood is used all too often as a weapon. Trying to say that while personhood holds tremendous power, its definitions are always arbitrary. Trying to say—I stutter over the gravity of those words.

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Call for Papers: Policy Analysis and the Politics of Health Policy

ddjhppl_41_1How, when, and where does academic policy analysis about the health care system enter the policymaking process?  How have healthcare policymakers seen and used policy analysis in the development, implementation, and perhaps repeal of the Affordable Care Act?  As the US moves from a more technocratic to a more populist administration, how is the role of policy analysis likely to shift? We invite papers for a conference at the Wagner School, New York University in spring 2017 to explore the role of policy analysis in the political process, focusing particularly on the Affordable Care Act. The Journal of Health Politics, Policy and Law will accept five to seven papers from the conference to run in a special issue after undergoing peer review. Sherry Glied, Dean of the NYU Wagner School of Public Service, is Guest Editor of this Special Issue of JHPPL.

Background

The relationship between scholars in health policy and policymakers has long been contested.  Back in 1966, following the passage of Medicare and Medicaid, Odin Anderson, reviewing the relationship between research and policy, reported that he was “pessimistic” and concluded a dispiriting review by asking “what is then the value of social and economic research in the health field?”  In the ensuing 50 years, health policy scholars have continued to publish and policymakers have continued to legislate and implement health policy.  Funders increasingly demand dissemination plans to ensure that the findings of the research they support are influential in the policy process.  A new scholarly field of “knowledge translation” has emerged.  Yet many observers remain pessimistic about the influence of evidence on policymaking.

Many aspects of the Affordable Care Act’s development and implementation offered opportunities for scholarship to influence the process – from the initial decision to focus on health reform, to the design of the exchanges and the Medicaid expansion, to the investment in comparative effectiveness research and delivery system improvements, through the most recent repeal-and-replace debates.  The Law’s path has wound through Congress, the Federal Executive Branch, the Courts, and through State Legislatures and Governor’s Offices.  How, where, and when did policy-related scholarship play a part in these processes?  How, where, and when should it have played such a part?  The purpose of this research conference is to explore these questions both positively and normatively.  While the focus of the conference will be on the Affordable Care Act, we are also open to papers that consider other aspects of health policymaking.

Possible Paper Topics and Target Audience

We seek to cast a broad net and are open to studies by political scientists, economists, sociologists, historians, health services researchers, and others. Papers could examine differences and similarities in how research evidence is used in the various institutions of government (committees, budget agencies, executive branch departments, the judiciary); how evidence plays into lobbying and stakeholder engagement; the uses of evidence in the context of Federal/State relations; the role of the technocracy (expert advisory panels, budget agencies, actuaries, regulatory impact analyses, budget scores); how policymakers address conflicting research findings (for example, in the discussions of job loss); how Congress acts when evidence is sparse (as in the case of the CLASS Act), how partisanship affects the use of evidence; as well as papers that explore more normative issues, such as the relationship between scholarship and accountability.

The target audiences for these papers include academic researchers; funders; and health policy makers at the local, state, and federal levels. Papers should be written so as to be accessible to all of these audiences.

Submission Guidelines

Interested authors should submit a 1-3 page proposal by March 1, 2017 by email to Jennifer Costanza, Managing Editor of JHPPL, at jhppl[at]brown[dot]edu. Please put “Policy Analysis Conference” in the subject line of the message. JHPPL will respond to the proposals by March 15, 2017.  Accepted authors will present completed papers at the conference at NYU on May 2, 2017.  The papers will then undergo peer review for a special issue of the journal.