On Biomedicine and its Limits: An Interview with Joseph E. Davis

—Joseph E. Davis

[This piece originally appeared on Social Trends Institute.]

Q: The title of your book is To Fix or to Heal: Patient Care, Public Health, and the Limits of Biomedicine. What choice is implied by the phrase “fix or heal”?

A: In our book “fix” alludes to a reductionistic medical framework, “heal” to a more holistic one. We use this reductionism/holism distinction to frame a broad continuum of concerns, from patient care to global health disparities. Neither term has a univocal meaning, but “reductionism” means generally those features of the biomedical model against which “holism” aligns itself. These features include a mechanistic and narrowly somatic understanding of disease, a preoccupation with cure to the neglect of prevention, diminishing medical care to a marketplace commodity, and restricting the definition of the human good to naturalistic terms.

Q: The term “holistic” often refers to “alternative” medical approaches, such as homeopathy or ayurveda. Is that what you have in mind by “holism?”

A: Not really. “Holism” in that sense opposes conventional medicine and wants to replace it. We have in mind a different holism: a set of interlinked ideas articulated within the mainstream of medicine and social science. “Holism” as we use it includes a broad range of systemic, integrative concerns: the patient as person, the experiential aspects of suffering, the environmental determinants of health, and more. The shared feature of all these concerns is a contextual understanding of disease causation, intervention, or prac­tice.

Q: The title seems to frame the issue as an either/or choice: to fix or to heal. Is it possible to do both?

A: The or is not meant to indicate an absolute distinction. Reductionistic and holistic approaches are not polar opposites, but ways of thinking that are often negotiated in practice. The elements of the “fix” orientation have their proper place; what we stand against is the belief that they are entirely sufficient. Our argument is that the contemporary practice of medicine is based on both prodigious knowledge and very real limitations. We need a balance between “fix” and “heal” orientations.

Q: What are the “limits of biomedicine” mentioned in the subtitle?

A: The book is divided into three sections, each of which tries to suggest some challenges to the prevailing “fix” orientation. Part 1 focuses on the cultural context of reductionist medicine, and the limitations that context imposes. Biomedicine is powerful, but it is powerful in part because it echoes key features of the broader social order. To some extent, biomedicine depends on this cultural context for its power, and is captive to it. It is increasingly clear that this dependency presents certain challenges to medicine. For instance, biomedicine is deeply individualistic, but the very logic of individualism makes it hard for medicine to resist the encroachments of consumerism, and defend its own goals as an ethical profession.

Part 2 focuses on the practical limits of reductionist medicine in the face of the shifting disease burden. The biomedical model came of age in a era when infectious diseases dominated, and a specific disease/specific cure orientation was well suited to such diseases. But the chronic illnesses which now kill most Westerners resist explanation in deterministic, monocausal terms. Moreover, developments in the larger world cast doubt on biomedicine’s apparent success. From the rising cost of health care to the unexpected resurgence of infectious disease, we are confronted with the need for holistic approaches like never before. In light of a globalized world, one-dimensional and reductionist approaches seem anachronistic.

Part 3 addresses the limits of current ethical discourse about biomedicine. Health and illness are public as well as private matters, and ethical questions are ineradicable from medicine. The great cultural appeal of the reductionist biomedical approach was partly that the messy business of moral questions could largely be avoided—or so it seemed. In fact, the biomedical model smuggled in a great many moral convictions without ever examining them. “Health” language can become a kind of repressive ideology, and health has become nearly synonymous with the good life. An important work of ethics here is to draw out the background assumptions of biomedicine, making them transparent and open to discussion. The naturalistic language of conventional bioethics may not be equal to this task.

Joseph E. Davis is Research Associate Professor of Sociology and Director of Research at the Institute for Advanced Studies in Culture at the University of Virginia. He is one of the editors of To Fix or To Heal: Patient Care, Public Health, and the Limits of Biomedicine (NYU Press, 2016), the Publisher of The Hedgehog Review, and is the author or editor of three other books, including Accounts of Innocence: Sexual Abuse, Trauma, and the Self.

What Sarah Palin’s Endorsement of Donald Trump May Say about Tea Party Women

—Melissa Deckman

[This piece originally appeared on Presidential Gender Watch 2016 on January 26, 2016.]

Sarah Palin’s high-profile endorsement of Donald Trump’s presidential campaign in Iowa last week continues to dominate the news cycle. Many view Palin’s motives for endorsing Trump as sheer opportunism, while some conservatives, even Palin’s own Facebook followers, feel betrayed by her decision to back Trump given his uneven (at best) record on many conservative issues. Taken at face value, however, Palin’s decision to endorse Trump may best be viewed as an utter rejection of the GOP establishment.

As she indicates in her—ahem—colorful endorsement speech, Palin believes that Trump is a political force that exposes the “complicity” of both sides of the political aisle in enabling a “fundamental transformation of America.” She argues that Trump has been able to “tear the veil off” the political system:

The permanent political class has been doing the bidding of their campaign donor class, and that’s why you see that the borders are kept open. For them, for their cheap labor that they want to come in [sic]. That’s why they’ve been bloating budgets. It’s for crony capitalists to be able to suck off of them…We need someone new, who has the power, and is in the position to bust up that establishment to make things great again.

Palin is not alone among conservatives, particularly those who sympathize with the Tea Party, in their view that the Republican Party is weak-kneed and ineffectual, despite lots of evidence that the GOP has taken a far right turn thanks in no small measure to the Tea Party movement. In my forthcoming book Tea Party Women: Mama Grizzlies, Grassroots Activists, and the Changing Face of the American Right, I interview dozens of women active in the Tea Party and they, too, uniformly express downright derision toward the Republican Party. These Tea Party women believe that the current crop of GOP leaders will do little to shrink the size and scope of government. That belief, in fact, helped to propel their activism in the Tea Party.

However, I was surprised to find that some of the animosity toward the Republican Party among Tea Party women is linked, in part, to their gender. Several activists I interviewed recounted attempts to influence their local or state Republican parties in a more conservative direction, only to encounter a hostile, good ‘ole boys network. For example, Katrina Pierson, who co-founded the Garland Tea Party in Dallas, Texas in 2009, hails the Tea Party movement for allowing women to find their voices as a new generation of conservative leaders, telling me, “It used to be that men in the GOP or male leaders could take a woman’s idea as their own—I have had this experience—but with social media women can be attributed, they can define their own brand, and define yourself and have your ideas heard. You don’t have to go through the good old boys’ club any longer and that has been huge for women.” Women such as Pierson describe the Tea Party as a more appealing form of political activism for authentically conservative women than the GOP. Social media platforms, in particular, not only allow Tea Party women a chance to promote their political views, but also serve as launching pads for their own political careers. For instance, although Katrina Pierson failed in her challenge to Representative Pete Sessions in the 2014 GOP congressional primary in her home district in Texas, her high-profile involvement in the Tea Party led to her being hired as the national spokeswoman for the Trump presidential campaign. She maintains that Trump’s nontraditional campaign appeals to her and other Tea Party types: “He’s sort of not politically correct. He sort of calls it like he sees it. I’m kind of that way, too.”

To be sure, the past several election cycles have brought some very conservative women to prominence within the Republican Party; examples include Senator Joni Ernst (IA) and Representative Mia Love (UT), both elected to Congress in 2014 (and both endorsed by Sarah Palin). Yet their success is the exception and not the rule. Ironically, the challenges that many right-wing Tea Party women face making inroads with the Republican Party are similar to those experienced by women representing the ideologically moderate flank of the party. As the Republican Party has become more conservative ideologically in the past few decades, work by political scientist Danielle Thomsen shows that GOP women state legislators, who have historically been more moderate than their male counterparts, have been reluctant to seek their party’s nomination for Congress, given that primary voters are far more conservative than voters in the general election. Likewise, experimental research by David King and Richard Matland finds that Republican voters may punish female candidates within the GOP, believing that such women are less conservative than their male counterparts; thus, the perception of women being less ideologically conservative may hurt women’s chances to emerge both as candidates and as party leaders within the Republican Party.

These perceptions about Republican women, then, may have spillover effects for women in the Tea Party, despite their very conservative orientation: if Republican party leaders, most of whom are men, believe that women within the party are less conservative than men, Tea Party women may be hindered in their ability to wield influence within the GOP itself, making involvement in the Tea Party a more appealing alternative.

Turning back to the Republican presidential race, however, what role will Tea Party women play in choosing the eventual nominee? Will Sarah Palin’s endorsement of Donald Trump mean that the “mama grizzlies” she has previously called to arms will follow suit? Possibly. But it won’t likely be because of Sarah Palin’s endorsement alone. Right-wing icon Phyllis Schlafly, whose conservative bona fides are far less open to question than Sarah Palin’s and who has a strong following among socially conservative women at the grassroots level of politics, has also endorsed Trump, declaring him the “last hope for America.” Time will tell if Tea Party women will back Trump or perhaps will find a more “authentic” Tea Party candidate such as Ted Cruz appealing. He, too, was a popular figure with many of the Tea Party women I interviewed, and his anti-establishment rhetoric, as shrill and pronounced as Donald Trump’s, is also likely to find favor with many Tea Party women.

If the latest polls are any indication, however, Palin and Schlafly’s endorsements appear consistent with the sentiment of Tea Party women in battleground states. According to CBS/YouGov, Trump bests Cruz among Republican women and Tea Party voters in Iowa, New Hampshire, and South Carolina who seem to agree with Palin that, “[Trump] is perfectly positioned to … make America great again.” She added, “Are you ready for that, Iowa?” Come next week, we’ll know.

Melissa Deckman is the Louis L. Goldstein Professor of Public Affairs at Washington College, where she also chairs the Political Science Department. An expert on gender, religion, and American politics, she is the author or co-author of four books, including Tea Party Women and School Board Battles: The Christian Right in Local Politics, winner of the 2007 Hubert Morken Award for the best book on Religion & Politics from the American Political Science Association. She chairs the board of the Public Religion Research Institute and her political commentary has appeared in The Washington PostHuffington Post, and the Brookings Institution’s FixGov blog. Her latest book, Tea Party Women: Mama Grizzlies, Grassroots Activists, and the Changing Face of the American Right, will be published by NYU Press in May 2016.

What Makes a Story

The Secret Life of Stories: From Don Quixote to Harry Potter, How Understanding Intellectual Disability Transforms the Way We Read by Michael Bérubé is out today! This excerpt appeared in The Chronicle of Higher Education.

Pat Kinsella for The Chronicle Review

—Michael Bérubé

My kids are no longer kids. One is in his late 20s, one in his early 20s; Nick, the firstborn, was a “gifted” child, capable of copying drawings of medieval European hill cities at the age of 5; Jamie, his brother, has Down syndrome. Jamie also has an encyclopedic knowledge of sharks and the music of the Beatles, and an astonishing memory. Both of them are natural narrative theorists — though because of the differences in their capacities for abstraction, I wound up testing their narrative theories in different ways.

I learned almost as soon as Nick could talk that he loved my stories; he even gave them numbers, though I never did learn his classification system. Nick liked stories with drama — the story of how the hockey-camp bus left Tallinn without me in 1972; the story of how the camp counselor threw me out of the pool; the story of my first day in first grade, when the teacher corrected me for saying I was 6 when I was still only 5 (a situation that got worse in the following years, after that teacher decided to skip me into the second grade because of my reading skills). But as you might imagine, sometimes Nick’s appetite for stories became wearisome. I read to him every night, and I told him stories about people in my life, and I even made up some stuff. But one day when he was about 3 and a half, on a long car trip in the Midwest, he asked for story after story. And finally I decided to conduct a little experiment.

“All right,” I sighed. “I have a new story for you. It goes like this: Red. Yellow. Orange. Blue. Violet. Green. Black. Brown. White. … ”

“Daddy!” Nick interjected, annoyed. “That is not a story.”

“No?”

“No! It is just a bunch of colors.”

“And a bunch of colors is not a story?”

“No! A story has to have things in it.”

“Ah,” I replied, Phase 1 of the experiment complete. “A story has to have things in it. You are right. OK. Tree. Cloud. Sunshine. Water. … ”

“No, no, no,” Nick insisted, more annoyed. “Things happen in a story.”

“Fair enough,” I acknowledged. “The tree blocked the cloud. The sunshine reflected off the water. The flowers grew. … ”

“Dad!!” Nick interrupted, even more annoyed. “That is not a story either.”

“But things happen in it,” I pointed out.

“But you are not telling why they happen.”

Eureka. We were very close, at this point, to E.M. Forster’s famous dictum, “‘The king died, and then the queen died’ is a story. ‘The king died, and then the queen died of grief’ is a plot.” In a story, things have to happen for a reason.

Jamie learned his alphabet before he started kindergarten at age 6; he learned to read at a first-grade level by the time he was 8. Along the way, he somehow taught himself the American Sign Language alphabet and a few simple ASL words by imitating the pictures he saw in a Sesame Street book devoted to the subject. But even though Jamie had developed a profound love of sharks, barn animals, and the movie Babe (just like any number of children his age), he didn’t really understand stories as stories. He had an amazing recall of individual scenes, particularly scenes that involved pratfalls, and he was able to repeat most of the dialogue from the exchange in which Ferdinand the Duck tells Babe the Pig why he wants Babe to go into Farmer Hoggett’s house and steal the Hoggetts’ alarm clock from the side of the bed. But he didn’t understand how much of the movie’s plot is predicated on that scene (the issue is whether animals can avoid being eaten by humans if they demonstrate that they are “indispensable,” and Ferdinand has decided that he will crow like a rooster each morning in order to stay alive), nor did he understand what it might mean for a plot to be “predicated on a scene” in the first place. Until he was 10, Jamie enjoyed narratives almost as if they were a series of entertaining vignettes.

Then, in 2001, we took him to see Harry Potter and the Sorcerer’s Stone. We feared that the film might be a bit too much for him to take in — from the opening scenes of Harry the Abject Orphan to the climactic sequence in which Voldemort’s baleful spirit speaks from the back of Professor Quirrell’s head, with all the plot miscues and misdirections along the way (most of which point to Snape rather than Quirrell as the malevolent force in Harry’s world). But we were most pleasantly surprised to find that he got it — and not because he himself had glasses just like Harry’s, not because he dreamed of going to Hogwarts himself. He roundly dismissed all comparisons between himself and Harry. Rather, he got it because he loved the story — and he loved talking about it for weeks, even after he’d seen the film three or four times. Impressed, I asked him if he’d like to read the book on which the film was based, and he responded with hand-rubbing glee.

Thus began his — and my — adventures with J.K. Rowling’s plots, and Jamie’s fascination with the intricacies of plotting. A critical index of Jamie’s increasing sophistication as a reader was that he became increasingly capable of (and delighted by) making thematic connections that enriched his understanding of his other favorite narratives. In the course of our reading of Half-Blood Prince, we came upon an extended flashback/exposition in which the young Professor Dumbledore visits an 11-year-old Tom Riddle in the orphanage in order to inform him that he is a wizard and extend him an invitation to Hogwarts. Jamie gasped at Tom’s arrogant reaction to Dumbledore’s invitation, and, despite his fatigue, stayed awake for another couple of pages.

But before we got to that point, I read the following passage: “The orphans, Harry saw, were all wearing the same kind of grayish tunic. They looked reasonably well-cared for, but there was no denying that this was a grim place in which to grow up”. I decided to say a few words about the orphanage, and about Harry’s odd, complex moment of sympathy for the friendless boy who grows up to become Voldemort. “Did Harry have a happy childhood when he was growing up?” I asked. Jamie shook his head no. “He had the Dursleys,” he said. I pointed out that Harry and Voldemort are similar in that they grow up without parents, and that the kids in the orphanages are there because they have no parents either. I added that Jamie might remember the orphanage in the filmLike Mike, which was in the “heavy rotation” section of Jamie’s DVD collection for a while.

“Or Free Willy,” Jamie suggested. “Yes, that’s right,” I said with some surprise. “Free Willy is also about a kid who is growing up without parents, and who has stepparents, and he has trouble getting used to his new home.”

“Or Rookie of the Year,” Jamie said. “Not exactly,” I replied. “In Rookie of the Year, Henry has his mother, but his mother’s boyfriend is a creep, and we don’t know where his father went before he was born.”

Star Wars too. There’s Luke,” Jamie said. “Good one! Great example!” I cried. Perfect, in fact. Star Wars is like a class reunion of the West’s major mythological motifs.

Mrs. Doubtfire,” Jamie offered. “Nope, that’s about parents who are divorced and live in different houses,” I said, “but still, in Mrs. Doubtfire the father misses his kids and wants to see them, so dresses up as a nanny.”

“What about Babe?” Jamie asked.

“Oh yes, that’s a very good example,” I told him. “Babe has no parents, and that’s why he is so happy when Fly agrees to be like his mother.”

“And Rex is like his father,” Jamie added. “And Ferdinand the duck is like his brother.”

Why, yes, Ferdinand is like his brother. This had never occurred to me before. But who knew that Jamie was thinking, all this time, about the family configurations in these movies? And who knew that Jamie knew that so many unhappy families, human and pig, are alike?

But my children, adept narrative theorists though they be, are not my only inspiration. I’m also informed by years of conversations with colleagues in disability studies, including two wholly unexpected encounters that subtly but decisively widened the parameters of how I could think about how an understanding of intellectual disability can transform the way we read.

The first encounter happened at the 2011 Modern Language Association convention in Los Angeles, and in retrospect is merely amusing — though at the time, it seemed like the stuff of professors’ anxiety dreams. I was on a panel titled “Narrative and Intellectual Disability,” chaired by Rachel Adams, a professor of English and comparative literature at Columbia University. I was trying to get at the question of how narrative irony works when it involves a character with an intellectual disability, a character who is rendered explicitly as someone who is incapable of understanding the story he or she inhabits. Steinbeck marks Lennie in this way from Of Mice and Men’s opening scene:

Lennie looked timidly over to him. “George?”
“Yeah, what ya want?”
“Where we goin’, George?”
The little man jerked down the brim of his hat and scowled over at Lennie. “So you forgot that awready, did you? I gotta tell you again, do I? Jesus Christ, you’re a crazy bastard.”
“I forgot,” Lennie said softly. “I tried not to forget. Honest to God I did, George.”

And just as Lennie does not understand where he is going or why, so too will he not understand what is going to happen to him in the book’s final pages; in that sense, his intellectual disability provides the structure for the narrative irony, and the narrative irony defines the novel. Lennie knows not what he does, and we know he knows not what he does. But I mentioned Of Mice and Men only in passing, opening instead with Benjy Compson of The Sound and the Fury and proceeding to a comparison between Elizabeth Moon’s The Speed of Dark and Mark Haddon’s The Curious Incident of the Dog in the Night-Time,because Haddon provides an ingenious (and quite moving) solution to the problem of writing a novel in the voice of a character who (initially) does not understand the narrative he is in, whereas Moon has to skirt that problem by giving us a second level of narrative focalized through characters who do not have autism and who can explain what is at stake in the unfolding of the narrative told by the character who does have autism.

At the last minute, one of my fellow panelists had to pull out of the convention, and Rachel Adams informed us that Rob Spirko, a senior lecturer in English at the University of Tennessee at Knoxville, would substitute instead, with a paper titled “The Human Spectrum: Human Fiction and Autism.” Rob preceded me on the program — and proceeded to deliver a paper about The Speed of Dark and The Curious Incident of the Dog in the Night-Time,making many of the points and citing many of the passages I had hoped to highlight in my paper. As I listened to Rob, I toyed with the idea of taking the podium and saying simply, “My paper is what Rob said,” but just then, he made an offhand reference to the “Rashomon-like” narrative sequence in Philip K. Dick’s Martian Time-Slip. I snapped to attention: This seemed to me to be something worth discussing. I had not written anything about Martian Time-Slip in my paper, but I had recently read it and was still trying to figure out what to make of its extraordinary strangeness. And I was thrilled to be able to discuss it at a conference with Rob Spirko, who has worked on disability and science fiction for some time.

I did wind up delivering most of my original paper; Rob’s arguments and mine did not overlap completely. But I threw in some extemporaneous remarks about how the narrative sequences in Chapters 10 and 11 of Martian Time-Slip are not, in fact, Rashomon-like. If they were, they would involve four characters telling the same story from drastically different perspectives, narrating significantly different sequences of events, such that the very idea of “the same story” becomes untenable. But they don’t. Instead, they open by telling the same story almost word for word, and then proceed into disturbing fantasias that cannot be attributed to any one character — even though each character, the following day, feels the aftereffects of the sequence as a whole. The sequence is not merely “about” the perspective of a character with an intellectual disability; it represents an attempt to render intellectual disability in the form of a disabled textuality that cannot be attributed simply to any one character’s mental operations.

And when I realized that, thanks to the offhand remark of a last-minute-replacement speaker giving a 15-minute paper at the MLA convention, I realized that I had a critical piece of my argument — a way of talking about intellectual disability and narrative that did not begin and end with the discussion of whether X character has Y disability.

As for the second encounter: To say that it was “wholly unexpected,” as I have done, is actually an understatement. It was pretty much the last thing in the world I might have imagined. It involved a whimsical decision to join Facebook (after years of steadfast, principled resistance) and, relatedly, to go to the 40th-anniversary reunion of my sixth-grade class (not a happy place for me when I was 10, but I thought that the details of tween angst of 1972 were not worth recalling in 2012).

Within a few days of joining Facebook, I was hailed by one Phyllis Anderson, nee Phyllis Eisenson — someone I had not thought about in almost 40 years. And in the course of striking up a conversation with this person 40 years after graduation from PS 32 Queens, I happened to mention Madeleine L’Engle’s A Wrinkle in Time, about which I had just been reading; 2012 was the 50th anniversary of the book’s publication, and in 1972 at least half of our cohort had read it. And Phyllis was of course (or so I imagined) Meg Murry, the very smart girl with the long hair and prominent glasses. This rudimentary identification was complicated a bit by the fact that I identified more with Meg than with any male character in the book — with her sense of isolation, helplessness, and vulnerability above all — and by the fact that I did not stop to think that I might be inadvertently saying to my former classmate, “I remember you — you were the girl with glasses and what’s more, everybody thought you were a weirdo.”

But in the course of that brief Facebook conversation, as we caught up on partners and kids and professions (literature professor, clinical psychologist), I mentioned that I was sitting at a table across from Jamie, who had just handed me a list of 25 kinds of sharks. To which Phyllis replied, “I am sure you did not know that my brother is autistic.” Well, I could have plotzed. Needless to say, I did not know that; I did not know anything about this person, starting with the fact that she had a brother. And a brother with autism, in the 1960s (Andy Eisenson was born in 1957).

Oh my goodness, I thought at once, what that must have meant for her mother — to have a child with autism at the precise historical moment when autism was being attributed to “refrigerator mothers.” How difficult that must have been. Followed almost immediately by, oh goodness, and then along comes this very smart girl, the younger sister. I can’t even begin to imagine the family dynamics, except that no, wait, yes I can. And the story quickly went still deeper: Sylvia Eisenson, Phyllis’s mother, was in fact a psychologist in the New York City school system. She was A.B.D. from the University of Illinois at Urbana-Champaign, where I taught for 12 years. She knew very well what Bruno Bettelheim was doing with Leo Kanner’s refrigerator-mothers theory, and had actually written to Bettelheim to tell him that his work was destructive to loving parents. She received a reply from an underling, telling her to get therapy.

All this I learned in the course of one Facebook chat, which somehow went from “oh yes, I remember you” to serious familial and emotional matters in the course of a few minutes. Life in the disability community can be like that; I remember a conference at which someone introduced herself as the parent of a child with Down syndrome and we wound up talking about our then-teenaged sons’ desires for friends, especially girlfriends, within 10 minutes. Because there is so much shared terrain, casual conversations can suddenly turn into serious discussions of special-needs trusts and the ethics of getting your child or sibling to sign over his power of attorney. And then, a few days later, after Phyllis had gone back to look at her copy of A Wrinkle in Time, she wrote:

just read the first chapter of “Wrinkle”, and Meg is described with her glasses and braces and general awkwardness. And I thought — that is at least partly why I liked this book so much — there I am, though without the spunk to duke it out with the kid who said something mean about my brother.

When I read that note I had yet another “oy, what did I say” moment: Oh yes, I remember you with your glasses and braces and general awkwardness? (It turns out the braces came later. I did not remember any braces.) But it was the last clause that grabbed me. No doubt young Phyllis Eisenson, or anyone with a sibling with an intellectual disability, would read Wrinkle with that inflection, with a sense of protectiveness for the more vulnerable family member: Wasn’t this one of the lessons we learned in Reader-Response Criticism 101?

From one angle it is a rudimentary point, a truism: Of course we all bring to every text the welter of experiences, associations, encounters, and intertextual relations we have accumulated over the years. Reader-response criticism made much of this rudimentary point for much of the 1970s, with earnest Critical Inquiry forums on whether readers or texts make meaning, whether meaning is determinate or indeterminate, and whether the hypothetical “Eskimo reading” of Faulkner’s “A Rose for Emily” can be ruled out of court.

But from another angle, this exchange seemed (and seems) to me to open onto a principle of considerable breadth, one that has not yet been considered by literary criticism influenced by disability studies. It is the complement to the Rob Spirko-induced insight that disability in literary texts need not be located in, or tied to, a specific character with an identifiable disability: It is the Phyllis Eisenson-induced insight that disability in the relation between text and reader need not involve any character with disabilities at all. It can involve ideas about disability, and ideas about the stigma associated with disability, regardless of whether any specific character can be pegged with a specific diagnosis. This opens the field of criticism considerably; and I am going to insist that this is a good thing, not least because I am determined to cure disability studies of its habit of diagnosing fictional characters.

My argument is that even as disability studies has established itself in the humanities in a way that was unthinkable 20 years ago, it has still limited itself to too narrow a range of options when it comes to literary criticism; and though I am (obviously) being facetious about the idea of “curing” disability studies of anything, I am quite serious about the conviction that disability studies limits itself unnecessarily, as a new branch of criticism and theory, whenever it confines itself to determining the disability status of individual characters. Disability studies need not and should not predicate its existence as a practice of criticism by reading a literary text in one hand and the DSM-5 in the other — even when a text explicitly announces that one or more of its characters is (for example) on the autism spectrum. It is not that a character’s condition is irrelevant to how we read him or her; rather, I want to argue that we should avoid the temptation to think that a diagnosis “solves” the text somehow, in the manner of those “psychological” interpretations of yesteryear that explain Hamlet by surmising that the prince is, unbeknownst to himself, gay.

In opening the question of the potential relations between disabled and nondisabled characters (and readers’ potential relations to those relations) so that it includes characters who are merely presumed to be intellectually disabled by their fellow characters (such as Coetzee’s Michael K and Friday, from his novel Foe), we come to recognize intellectual disability not merely as the expression of somatic/neurological symptoms but as a trope, a critical and underacknowledged thread in the social fabric, a device for exploring the phenomenon of human sociality as such.

This is not merely a matter of remarking that the idiot and the holy fool offer strategic insight into human hierarchies and the contingency of systems of value, though it is partly that; it is also a matter of gauging how literary works depict systems of sociality in part by including characters who either are, or who are presumed by their fellow characters to be, constitutively incapable of understanding or abiding by the social systems by which their worlds operate. When you think about it that way, and you should, you realize that we have only just begun to explore the implications of disability for our understanding of the narratives we read and the narratives we live by.

Michael Bérubé is the Edwin Erle Sparks professor of literature and director of the Institute for the Arts and Humanities at Pennsylvania State University. He is the author of The Secret Life of Stories: From Don Quixote to Harry Potter, How Understanding Intellectual Disability Transforms the Way We Read (NYU Press, 2016).

Flint’s Sorry Legacy of Environmental Racism

—Carl Zimring

“I am sorry, and I will fix it.”

Michigan Governor Rick Snyder devoted his State of the State speech to the public health catastrophe in Flint that has poisoned its residents with high levels of lead in its water supply.

This failure has many parents, including Snyder. His administration placed an emergency manager in control of Flint’s finances, a manager who who was not elected by its citizens to do the will of the people of the city. Saving money by switching the water supply ignored the well-being of Flint residents, as was the state’s initially dismissive response to health complaints.

Snyder bears responsibility and blame, but he is not alone. The seeds for this catastrophe were sown decades before the 2011 managerial takeover. Deindustrialization and residential segregation shaped a city with low revenue, high unemployment, and the apathy and scorn of white Michiganders. That history allowed the past two years of lead poisoning.

Environmental racism is the systemic placing of toxic burdens upon people of color. It is an example of structural racism – not necessarily the conscious acts of individuals, but ways in which society is structured that creates patterns of unequal burdens.

The health catastrophe in Flint involves reliance on decaying infrastructure due to disinvestment in the region. Why these conditions led to the poisoning of black children involves structural patterns in residential real estate practices, as well as recent political decisions. Environmental Justice movements have fought for safer, healthier communities for decades, including African American residents opposing waste siting in Houston (1978) and Warren County (1982), and Latino residents of Chicago protesting dirty coal-burning power plants in their neighborhoods in this century.

Yet inequalities persist. They are rooted deeply in land-use patterns, employment patterns, and in cultural stereotypes that privilege whites to have clean, safe communities at the expense of people of color. Noxious stereotypes that nonwhite people were somehow less clean than whites emerged in the nineteenth century, stereotypes that have informed who handles waste and where waste is located. Sociologists observed national patterns of inequities by the late twentieth century. Thirty years ago, the report Toxic Wastes and Race in the United States concluded exposure to toxic pollution was determined by race above all other variables, including class, region, and urban/rural density. Ten years ago, a followup report revealed more continuities than change. Flint is further continuity.

The eyes of the nation are on Flint in 2016, but they could easily be on lead-contaminated communities in East New York or Gary, Indiana. Flint is the most conspicuous example of environmental racism in the United States. There are so many examples, however, that a bimonthly journal (Environmental Justice) has filled eight volumes of articles chronicling environmental inequalities. Governor Snyder’s promise that he will fix the present crisis flies in the face of his past actions, the history of Flint, and majority-minority communities across the United States. Recognizing this history is crucial to fixing what ails Flint.

Carl A. Zimring is Associate Professor of Sustainability Studies in the Department of Social Science and Cultural Studies at the Pratt Institute. He is the author of Clean and White: A History of Environmental Racism in the United States (NYU Press, 2016).

Dissent and the 2016 Election

—Ralph Young

There have been many times of crisis throughout American history when some citizens completely lose faith in the political process. Invariably such times lead to a rise of uncompromising radicals on the fringes of the body politic who eschew compromise in favor of a fundamental overhaul of what they see as a defunct system. One thinks of the Know-Nothings in the 1850s desperately fighting to stem the tide of Irish immigration which they feared would destroy the Protestant fabric of this nation, or the Populist Party of the 1890s who believed neither of the major parties were willing to address their grievances, or the rise of radical demagogues on both right and left during the Great Depression when it seemed to many that capitalism itself had failed, or was at best on the ropes, who denounced everything from the New Deal to Wall Street, from big business to communism. Some hated Franklin Delano Roosevelt; some hated the “economic royalists.”

What we are experiencing in the second decade of the twenty-first century is a replay of this historical phenomenon. As we approach the 2016 election there are those on the right who deplore what they see as creeping European style socialism on the part of a government that has abandoned laissez faire capitalism in favor of regulatory control over business and finance, a government that has abandoned the rugged individualism that they believe (falsely) made this country great. And on the left we see progressives who are highly distraught that the Democratic Party has turned its back on democracy and dances to the tune of business interests just as much as the Republicans. Thus we have outsiders challenging the establishment, on both right and left, who, believing that bipartisanship and compromise is weakness, are tapping into a vein of deep-seated discontent. Many Americans are obsessed by a nagging fear that the United States is in decline and will soon lose its special place in the world. And this helps explain the unexpected popularity in the primary season of Donald Trump and Ben Carson on the right and Bernie Sanders on the left.

Registered Republicans want anyone, even candidates as unqualified as Trump and Carson, who will oppose the Washington establishment, they want an outsider, a novitiate in politics, precisely because they are not politicians, in fact are completely ignorant of how politics works. And large numbers of Democrats, fed up with the coziness of Democratic politicians with Wall Street and believing that the United States is no longer a democracy, but an oligarchy, are turning to socialist Bernie Sanders as the only hope to return the United States to its democratic roots. “Isn’t it strange,” Sanders’ forerunner and hero Eugene V. Debs said during his trial for sedition in 1918, “that we Socialists stand almost alone today in upholding and defending the Constitution of the United States?” Sanders is taking up Debs’s message and it resonates deeply with his supporters. Whether they are outsiders, or demagogues, or opponents of business as usual, hardnosed individuals from Huey Long to George Wallace, Father Coughlin to Donald Trump, all appeal to the populist impulse. And all are as American as Apple Pie.

Ralph Young is Professor of History at Temple University. He is the author of Dissent in America: The Voices That Shaped a Nation, a compilation of primary documents of 400 years of American dissenters, and Dissent: The History of an American Idea (NYU Press, 2015).

A Response to Amber Scorah: Learning from Parents and Child Care Providers to Create Better Policies

Palley_Shdaimah—Elizabeth Palley & Corey Shdaimah

Amber Scorah’s loss of her son Karl is tragic. Leaving a young child in daycare can be hard for any parent. Scorah’s story illustrates why this decision is so much harder in the United States for two reasons. First, unlike in most other countries, many US parents who prefer to care for their own infants do not have the financial and societal support to do so. Second, we do not treat early child care and education or the people who provide it as the valuable service that it is.

Despite hardships, most parents and providers work hard to find and deliver the best care for young children. What happened to Karl is rare. Most children survive and those in high quality care thrive. That does not make the decisions that parents of young children face any easier.

Some criticized Scorah for returning to work and questioned how she could blame larger societal pressures on her own “poor” choice. The factors that shaped Scorah’s decision, however, were not only individual but also societal. The very real pressures that she and her family experienced, including a need for health insurance and salary, compelled her to leave Karl in care. As Scorah noted, we live in a society that values paid employment over caring responsibilities and often leaves little space for parents to stay with their children when they are the most vulnerable. Though parents should have choices to stay with their children until they are less vulnerable, our workplaces and our government have not provided such choices for most Americans. We are anomalous in the economically developed world, where most countries have some policy that protect parents’ employment and even provide some form of salary or insurance that allows parents to care for their own children or assists them in securing affordable, quality care.

While Scorah indicated that she does not necessarily hold the provider responsible, she does implicate child care providers as overburdened, insufficiently trained, and callous to the needs of their charges. In our discussions with child care providers across New York State, we have met many center based directors and family providers who view the children in their care (often for the majority of their waking hours) as a sacred charge. Their interests mirror those of the parents whose children they care for. They want more training, better pay to allow them to hire and retain a stable and sufficient workforce, and the best equipment and curriculums. Karl seemed to be in distress and though a child care worker noticed and expressed concern, no one followed up. Karl was also left on his stomach. These are both issues where better training might have prevented Karl’s death, and they raise the possibility of regulatory policy responses. In our research, however, we have found that regulation in response to rare tragedies often makes for bad policy that burdens providers without always resulting in substantive improvements. In any contemplated policy change, policymakers and advocates must consider the voices of parents and providers, whose input will lead to better policy.

This blog post was contributed by Elizabeth Palley and Corey Shdaimah, the authors of In Our Hands: The Struggle for U.S. Child Care Policy (NYU Press, 2014).

Hollywood Gossip Columnist Hedda Hopper Returns to the Screen in Trumbo

Famed Hollywood gossip columnist Hedda Hopper, played by actress Helen Mirren, is starring in the new movie Trumbo. Directed by Jay Roach and starring Bryan Cranston, the film is about screenwriter Dalton Trumbo and the blacklist in Hollywood during the Cold War. Hopper is featured in the film as Trumbo’s political nemesis, as indeed she was. Rather than dismissing the conservative, anticommunist Hopper as “a crank” who engaged in “pinko purges”—as did earlier portrayals—the film takes her formidable role in mid-20th century American popular and political culture seriously.

Whether known as the “duchess of dish” or a “gargoyle of gossip,” Hedda Hopper was a powerhouse of Hollywood’s golden age. For 27 years, beginning in 1938, she wrote her movie gossip column. Her mass media gossip—or as she put it “snooping and scooping”—drew over 30 million readers to her column at its height in the 1950s. As a gossip, she publicized information about private lives. She focused mostly on the big stars, their movies and marriages, their secrets and scandals. But what made Hopper most stand out from the crowd of celebrity journalists—apart from her famous, flamboyant hats—was her political coverage and political conservatism.

Hopper excelled at a style and practice of journalism that blurred public and private, politics and entertainment and set the context for our current era. By combining and wielding gossip about the worlds of both entertainment and politics, Hopper inserted celebrity into her coverage of politics and politics into her coverage of celebrities. Her insertions took the form of today’s sound bites—simple morsels for immediate consumption. But making information entertaining simplifies the political debate and obscures the political issues. Hopper would have been very comfortable with our historical moment where politicians and celebrities are interchangeable, and personal attacks and character assassinations are a regular part of political discourse.

Hopper used her journalistic platform to promote her conservative politics and traditional values. She attacked members of the film industry who departed from her political views and moral standards, and mobilized her readers into letter-writing campaigns and movie boycotts. Always a proud member of the Republican Party, she sought to build opposition to the New Deal, the Civil Rights Movement, and modern manners and morals. Her highest priority, however, was fighting against Communism at home and abroad. For decades, Hopper busied herself with “exposing Reds in the name of patriotism.” By publicizing the Communist beliefs of members of the film industry, she violated their civil liberties and the right to keep their political affiliations private. But private information was her currency in the gossip trade.

One of her most prominent targets was Dalton Trumbo. She could not understand why a successful screenwriter like Trumbo, one of the highest paid screenwriters in Hollywood, “could be a Commie.” Once the blacklist was established in late 1947, with Trumbo on it, Hopper felt it was not enough and demanded further blacklisting. In 1950, Hopper accused MGM of continuing to employ Trumbo under a pseudonym, a warning to other studios to maintain the blacklist. Hopper continued to monitor Trumbo’s career and put pressure on those protecting him. When Trumbo received screen credit for Spartacus (1960), effectively breaking the blacklist, Hopper strongly objected. “The script was written by a Commie,” she wrote, “so don’t go to see it.”

The establishment of the Hollywood blacklist in late 1947 signaled the stifling of social criticism and political dissent in Cold War America. As the new movie Trumbo makes clear, Hedda Hopper helped make this so.

Jennifer Frost is Associate Professor of History at the University of Auckland, New Zealand. She is the author of Hedda Hopper’s Holywood: Celebrity Gossip and American Conservatism (NYU Press, 2011) and An Interracial Movement of the Poor Community Organizing and the New Left in the 1960s (NYU Press, 2005).

3nder and the Threesome Imaginary

—Mimi Schippers

unnamedThere is a new app for hooking up, and it is marketed as a tool for finding “…kinky, curious and openminded singles and couples around you.” It’s called 3nder (pronounced thrinder), and according to a recent New York Post article, it is “built for threesomes.”

Riffing on of the wildly successful Grindr and Tinder, CEO Dimo Trifonov said that he came up with the idea because his girlfriend “confessed an attraction to women.” Here is how the app is described in a press release:

Our perception of love is evolving beyond social norms. 3nder helps singles and couples open up to their sexualities, elevated away from social pressure. It is a place where humans do not have to abide by the artificial rules of an ageing morality. It gives curious couples and singles a beautiful space to show their true selves, explore their sexualities, and discover like-minded humans.

It is true that in a mononormative world—one in which the monogamous couple is the only legitimate way to do emotional and sexual intimacy, sex is supposed to involve a twosome, not a threesome—that is two and only two people. Three in the bed (or on the floor or in the park) is outside of mainstream ideas of “normal” sex. In this way, threesomes do push against social norms.

However, if we look closer at what I call “the threesome imaginary,” or the fantasy of threesomes presented to us through on-line discussions of 3nder, those pesky social norms and social pressures are not so easily expunged.

For instance, reports about 3nder provide a consistent picture of what we mean by threesomes. According to Gabe Stutman, the app is perfect for “those seeking out novel sexual experiences.” As described on the iTunes website, 3nder is “about feeling comfortable with your curiosity about sexuality.”

Presented as a “novel experience,” or a “curiosity,” threesomes are constructed as a temporary suspension of normalcy.

What is this implied “normal?”

The Couple. Rather than challenge our perception of love as promised in the press release, threesomes are presented as something couples do to take a temporary walk on the wild side together. Couples, and the singles they invite in, are what define a threesome.

Moreover, according to representations of 3nder threesomes, the couple is heterosexual and the person invited into their bed is a woman. Trifonov, remember, came up with the idea for the app because his girlfriend wanted to have sex with a woman. The photo accompanying the New York Post article depicts a young, conventionally attractive man flanked on both sides by two young women. An article about the app on Salon.com includes a photo of a man and two women as does the one on Cosmopolitan’s website.

An article posted on Vice Channel’s Motherboard begins with an anecdote about two 27-year old women who used the app to search for a single guy with whom they could have a threesome. The photo features–you guessed it–a man between two women. The only article about 3nder that I could find that did not include an image of two women and a man is on the Huffington Post website. That image shows three men.

Where are the threesomes that include two men and one woman? If the couple using 3nder is heterosexual, according to media representations of threesomes, inviting another man into the mix is not a part of 3nder’s new world of love “beyond social norms.”

The reasons for this omission are many and, as I argue in Beyond Monogamy, most of them revolve around protecting hetero-masculinity from any queer threats that might come from the poly margins. There is no scenario in the mainstream threesome imaginary where a woman in a heterosexual couple gets to watch some boy-on-boy action between her husband or boyfriend and another guy, and there certainly is no room in hetero-masculinity for getting it on with another man while a wife or girlfriend watches. In other words, the implicit message conveyed by these articles (but not by 3nder) is that 3nder is there to fulfill every straight guy’s fantasy—a threesome with two women.

Also missing are black or brown people, for only images of white bodies accompany discussions of 3nder. According to these representations, there are no black or brown, let alone interracial 3nder threesomes. In other words, not only does the threesome imaginary preserve the couple and hetero-masculinity, it also conflates whiteness with sexiness, sexual subjectivity, and erotic adventure as harmless fun.

Despite the implicit messages about gender and race conveyed through internet reporting about 3nder, I’m enthusiastic about the potentialities of 3nder. I think there is potential for threesomes and other forms of poly sex and relationships to shake up social norms about love and relationships. My enthusiasm, however, is cautious. Unless we re-write our narratives about what a threesome looks like, we’re bound to follow the same race and gender “rules of an old morality” that 3nder promises to help us all overcome.

Mimi Schippers is Associate Professor of Sociology and Gender and Sexuality Studies at Tulane University. She is author of Beyond Monogamy: Polyamory and the Future of Polyqueer Sexualities (NYU Press, forthcoming 2016) and Rockin’ Out of the Box: Gender Maneuvering in Alternative Hard Rock.