Medical Humanities

Poem of the Week

Welcome back to our weekly poetry feature. For our final April posting, please enjoy the poem “Lost in the Hospital” from What the Body Told  (1996) by physician Rafael Campo. Much of Campo’s early poetry was in response to the AIDS epidemic and readers may find resonance during today’s COVID-19 pandemic.

It’s not that I don’t like the hospital.
Those small bouquets of flowers, pert and brave.
The smell of antiseptic cleaners.
The ill, so wistful in their rooms, so true.
My friend, the one who’s dying, took me out
To where the patients go to smoke, IV’s
And oxygen tanks attached to them–
A tiny patio for skeletons. We shared
A cigarette, which was delicious but
Too brief. I held his hand; it felt
Like someone’s keys. How beautiful it was,
The sunlight pointing down at us, as if
We were important, full of life, unbound.
I wandered for a moment where his ribs
Had made a space for me, and there, beside
The thundering waterfall of his heart,
I rubbed my eyes and thought, “I’m lost.”

Rafael Campo is Associate Professor of Medicine at Harvard Medical School and author of several books, including Comfort Measures Only, Alternative MedicineThe Enemy, and Landscape with Human Figure, all also published by Duke University Press. Campo’s most recent poem, “The Doctor’s Song,” featured in Harvard Magazine, attempts to make sense of the COVID-19 pandemic from the physician’s perspective. His books (and all in-stock titles) are currently available for 50% off with coupon SPRING50 during our sale.

Q&A with Frédéric Keck, Author of Avian Reservoirs

Keck, FredericFrédéric Keck is Senior Researcher at CNRS, director of the Laboratory for Social Anthropology in Paris, coeditor of The Anthropology of Epidemics, and author of several books in French. His newest book is Avian Reservoirs: Virus Hunters and Birdwatchers in Chinese Sentinel Posts, which is freely available until June 1, 2020 in our Navigating the Threat of Pandemic syllabus. The following interview originally ran in French in Philosophie Magazine and was translated by Dan Hicks.

A coronavirus transmitted from a bat to a pangolin at a wet market in Wuhan, and then to humans all over the world: what does this mean to you?

We are living in a changed world, but Europe has only just realized this with COVID-19. China and what I call its “sentinel posts”—Hong Kong, Taiwan and Singapore—have known this for some time. After the SARS outbreak in 2003, which was also caused by a coronavirus, these countries invested massively in virology research and in technologies to detect, screen and monitor populations to prepare for a crisis like this one. Chinese researchers were expecting a virus causing a respiratory disease to be transmitted from bats. After the initial three weeks at the end of December and up to mid-January, the Wuhan authorities controlled the epidemic, and they did what they had to do, according to the WHO report of 28 February. In Europe we simply refused to imagine this could happen to us. Little affected by SARS, Europe just didn’t understand the global shift that it caused—the fact that China has controlled pandemics not only on its own territory but also at the global level, and the fact that the Chinese authorities have influenced the nomination of the head of the World Health Organization after 2006. Europe doesn’t just lack the equipment to deal with the pandemic: we lack the imagination to understand what’s happening to us.

Can you say more about what you mean when you say that Europe lacks the imagination needed to prepare for pandemics ?

Avian ReservoirsIn Europe, public health is based on prevention not preparation. It’s led by nation states within defined territories, as with vaccination against tuberculosis or smallpox. But viral infectious diseases require global preparedness, swift detection, and containment. In the 1990s with avian flu, Chinese societies learned that this is about preparing for a catastrophic outbreak, with “sentinel” chickens in poultry farms, simulations of pandemics in hospitals, and stockpiling masks, vaccines and antivirals by national states and multinational companies. Back then, American strategies for anticipating nuclear attack was one model, but there are others: Japan has the frame of earthquakes; France has that of industrial action—preparing for a strike. The point is that industrial strike, an epidemic outbreak, an earthquake are catastrophic events which halt economic activity—they requires different forms of preparedness.

Can you tell me about the analogies you make between Chinese preparedness and hunter-gatherer societies, andbetween European “prevention” strategies with the world of pastoralism?

We can see virologists as “hunters” of microbes or viruses. That’s why they get along well with ornithologists, who also operate by tracking. The anthropology of hunter-gatherer societies allows us to reassess this figure of the hunter-tracker. The virologist isn’t just someone who observes invisible wild entities under the microscope: more than that, they seek to adopt the point of view of birds, bats, and monkeys. The virus is a warning signal that affects animals; the “hunter” follows its transmission from birds to pigs to humans, or bats to pangolins to humans. This tracking is a kind of “hunting,” and it sees uncertainty in relationships with animals. That which is hunted can also kill.

So, the hunting relationship is reversible. But pastoralism relies on what Foucault called biopolitics. Shepherds control their flocks, decide which animals are cared for, which killed or sacrificed to protect the herd. Biopolitics is the power to ‘make live’ and to let die. Now, this was Boris Johnson’s initial approach in the UK—on which he’s now reneging because it was of course an indefensible plan: to let the virus spread and to have 400,000 deaths among the old, the weak and the poor while city traders survive, with it all costing the smallest possible sum of money! Pastoralism made the modern state possible. That state is based on what I’m calling “prevention.” So today epidemiology and public health is on the side of the pastoralists.

Are we not obliged to use ‘pastoralist’ techniques when the pandemic is here ?

There is a middle ground between hunting and pastoral care, preparation and prevention: which I call “precaution.” Taken to its logical conclusion, pastoral care requires acts of sacrifice. It assumes that people must die since the most important thing is to maintain the health of the population as a whole – the so-called “herd.” But in contrast, Taiwan and Singapore quickly tracked down the virus and confined it, like hunters. Now of course if a “hunting” approach is applied badly or too late it becomes just precaution: it identifies maximum risk and shuts everything down. With “mad cows” and chickens with avian flu, all of a farm’s livestock were slaughtered if one animal was infected. Now we are the ones who are collectively confined.

What does this pandemic reveal about our relationships with animals ?

Since the 1970s, the ecology of infectious diseases, with major thinkers such as René Dubos and Frank Macfarlane Burnet, has been warning us that nature can “strike back.” Virologists have tracked Ebola (in 1976, from bats in Central Africa), AIDS (1981, from monkeys), mad cow disease (1996, cattle), avian flu (1997, chickens/migratory birds), SARS (2003, bats) and Middle East Respiratory Syndrome-CoV in Saudi Arabia (2012, camels). Then there’s what’s in store from the world of insects: Dengue fever, transmitted by mosquitoes, is at the gates of Europe; in 5 years we may have to adopt containment measures against that! Every four or five years a new disease emerges which comes from animals, against which we have no immunity, no vaccine.

So this is a kind of “revenge” of nature ?

Not quite. In my work, I reframe Jared Diamond’s idea of diseases of domestication. In my view, the 1970s witnessed a revolution as profound as the Neolithic revolution: industrial animal husbandry and its corollary, globalization of trade, have produced new diseases  because the relationship between humans and animals has been totally overturned.

But bats and pangolins are wild animals.

The geographies of diseases today no longer just involve places where humans and animals live together, as in the case of domestication, but to the unpredictable movements that come with industrial livestock farming, deforestation, loss of biodiversity and climate change. The “wild” has been dislodged and is forced to find other niches, including in urban areas. We Europeans have been “good shepherds,” and pastoralism has enabled us to deal with the diseases of the Neolithic period. But now we have to become hunter-gatherers again.

What kind of world is emerging out of COVID-19 ?

In the middle of a deeply unpredictable crisis, what’s certain is that China is ahead of Europe. Not because of a dictatorship capable of confining its population authoritatively and without resistance, but because of the experience of health disasters in China and in East Asia more generally. My argument is anthropological. We find it difficult to face our fear of disease-transmitting animals because we believe in a firm divide between nature and culture. Our “naturalist liberalism,” which has already done such a lot of harm to the planet, now needs to learn some humility.

Avian Reservoirs can be read or downloaded for free until June 1, 2020, and you can get a print copy for 50% off through May 1 with coupon SPRING50.

Care in Translation: Care-ful Research in Medical Settings

Especially relevant in these challenging times, “Care in Translation: Care-ful Research in Medical Settings,” the newest issue of East Asian Science, Technology and Society, is available now.

This issue is the latest addition to our Care in Uncertain Times Syllabus, whose content is all free to read online through June 30.

In “Care in Translation,” contributors investigate what care is, becomes, and brings in its wake in health care settings across Asia—and what stories we might tell about this. Essays highlight different styles of care-ful research relevant to STS, anthropology, and feminist studies. The production and the consequences of care are traced through techno-scientific mediations, situated ways of sense-making, political economies, historical trajectories, and public imaginaries of care.

Start reading “Care in Translation” or learn more about the journal, including how to subscribe.

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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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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Mesoamerican Experiences of Illness and Healing

The sixteenth-century encounter between Mesoamericans and Europeans resulted in a tremendous loss of life in indigenous communities and significantly impacted their health and healing strategies. In “Mesoamerican Experiences of Illness and Healing,” new from Ethnohistory, contributors explore archival indigenous and Spanish-language documents to address how indigeneous people experienced bodily health in the wake of the European encounter and uncover transformations of health discourses and experiences of illness.

They also investigate healing practices and medical chants; changing notions of the causes of illnesses; and the language of cleansing ceremonies, bone-setting, midwifery, and maternal medicine.

Browse the issue’s contents and read the first article by editor Rebecca Dufendach, freely available. Be sure to sign up to receive email alerts about new issues of Ethnohistory!

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.

Never miss a new book! Sign up for our e-mail newsletters, and get notifications of new titles in your preferred disciplines as well as discounts and other news.

New Poetry from Rafael Campo

978-1-4780-0021-1After publishing five of Rafael Campo’s previous books, we are delighted to be releasing his first collection this month: Comfort Measures Only: New and Selected Poems, 1994–2016. Gathered from his long career as a poet-physician, these eighty-eight poems—thirty of which have never been previously published in a collection—pull back the curtain in the ER, laying bare our pain and joining us all in spellbinding moments of pathos. Here we share one of his new poems from the collection.

 

Invaders

She says that back in Mexico the map
of the United States that hung above
the teacher’s desk was like a floating island
impossible to reach, impossible

for any girl like her to even dream
might welcome her. She gazes now instead
above my desk, her flattened breasts a map
no more accessible, no more forgiving,

the spreading cancer numinous, one could
say even beautiful, deceptive as
that distant promise. Here just one short year,
she tells me of the landlord calling them

“invaders,” six of them who shared a room,
the only toilet down the hall. She says
she cried alone beneath the Virgin Mary,
the church the only place she knew to go,

the flickering of candles casting shadows
in shapes above her everywhere like maps
to other worlds; she says she prayed for this
to be a better world. The clinic throbs

in pain outside my door, so many dreams
deferred, so many hearts invaded by
resentment or remorse, so many seas traversed
and borders crossed. So many journeys done.

To order a copy of Comfort Measures Only for 30% off, please use coupon code E18CAMPO at checkout.

 

Recent Scholarship on Trans* Surgery

TSQ_5_2_coverThe Surgery Issue,” a special issue of TSQ: Transgender Studies Quarterly edited by Eric Plemons and Chris Straayer, explores the vital and contested place of surgical intervention in the making of trans* bodies, theories, and practices. This issue engages “the surgical” in its many forms. Contributors contemplate a wide scope: physical, technical, and social aspects of the body; trans* and transition-related surgeries broadly construed; local and international endeavors; the conceptual, the theoretical, and the practical; the historical and the speculative.

Trans* surgery has been an object of fantasy, derision, refusal, and triumph. For decades after its establishment in the 1950s, clinicians considered a desire for reconstructive genital surgery to be the linchpin of the transsexual diagnosis. Drawing on earlier legacies of sexology and plastic surgery and the emerging specialties of endocrinology and surgical transplant, early emphasis on genital surgery determined clinical legibility, shaped forms of identification, produced institutional capacities, and became the object of criticism by those for whom a desire for body alterations indicated profound pathologies on the parts of patients and their willing surgeons. Subsequent contestations of the medico-surgical framework troubled the place of surgical intervention and helped mark the emergence of “transgender” as an alternative, more inclusive term for gender nonconforming subjects who were sometimes less concerned with surgical intervention.

Beginning in the 1990s, new histories of trans* clinical practice challenged the institutional claim that transsexuals were uniform in their desire for genital surgery, and trans* authors began to advocate relationships to their surgically altered bodies as sites of power rather than capitulation. Still others refused a focus on surgery-centric conceptualizations of trans* on the grounds that it obscures the conditions of how and for whom surgery is available, values Euro-American histories of transsexualism, and obfuscates the reality that trans* subjectivity might be as much about justice and rights as it is about physical transition.

Read the introduction to the issue, made freely available.

Eric Plemons, coeditor of “The Surgery Issue,” is also author of the recent book The Look of a Woman: Facial Feminization Surgery and the Aims of Trans- Medicine. Developed in the 1980s, facial feminization surgery (FFS) is a set of reconstructive surgical procedures intended to feminize the faces of trans- women. Plemons foregrounds the narratives of FFS patients and their surgeons, showing how the increasing popularity of FFS represents a shift away from genital-based conceptions of trans- selfhood. He demonstrates how FFS is changing the project of surgical sex reassignment by reconfiguring the kind of sex that surgery aims to change.

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.

Copyright Duke University Press, 2017. To order Brilliant Imperfection from us at a 30% discount, enter coupon code E17CLARE at checkout.