Spring 2013

Tufts University

Emory University

With annotations by Richard Noll, Margaret Price, and an interview with Emily Martin.



The Editors

From the character of Carrie Mathieson in Homeland to studies of historical figures such as Abraham Lincoln, there has recently been a series of popular and scholarly representations of the presence—and even benefits—of mental illness in individuals in leadership positions. In this video dialogue, Nassir Ghaemi—a clinical psychiatrist and author of the book A First-Rate Madness—discusses the relationship between leadership and mental illness with historian of medicine Howard I. Kushner.

The dialogue begins by examining the pitfalls and possibilities of using contemporary psychiatric diagnoses to understand past historical figures. It then branches out into an extensive discussion of how mental illness has influenced the decisions of past historical leaders, as well as the potential benefits of mental illness and mental disability for professionals today. Ghaemi and Kushner conclude by considering how biological and humanistic approaches to mental illness can be combined to design better approaches to mental health.






Richard Noll

TRIBAL EPISTEMOLOGIES | Who is a “legitimate” or “professional” historian? What is to be regarded as legitimate historical research? Can those of us who do not have graduate degrees in history or academic appointments in history departments ever be regarded as “legitimate” historians?

As I have learned, these are questions that “professional” historians cannot easily answer. Similarly, as I have learned from sad experience, a state license to practice psychiatry or clinical psychology (my original profession) also does not guarantee the clinical competence of such a credentialed individual. Anyone who identifies themselves as working within a particular academic discipline or profession is aware of the diversity of competencies of their colleagues within their field, and, as part of our professional initiation process, we are all conditioned in our youth to assume that there are behavioral norms and jurisdictional boundaries that must be policed. The tensions between “professional” historians and transgressors stem from one source: the inevitable cognitive dissonance created by differing tribal epistemologies and their resultant moral economies. What intellectual behavior is “allowed” and what is not? Where are the lines between “us” and “them?”

For those of us with credentials from the medical/mental health/public health professions, there is an acute sensitivity to the fact that we may be transgressing some sort of boundary when we conduct, and publish, historical research. We have not been properly “disciplined” by the mentors and machinery of a doctoral program in history. We sometimes wonder if our manners are perceived as proper, if our style of writing history is “acceptable,” if our selection of topic or interpretive framework is “in fashion” or not — hoping all the while that our scholarship will be acknowledged by “professional” historians who, we all acknowledge, have the advantage of extensive schooling in the historical arts.

I have often found myself admitting to my professional historian colleagues that I am “practicing history without a license” as a polite bow to their extensive training and expertise. However—and I wonder if Dr. Ghaemi secretly shares this conviction—I firmly believe that the source of whatever creativity I may exhibit as a historian of medicine and psychiatry emerges precisely from my perspective as an outsider to the historical profession. I do not have a chorus of internalized history professors who threaten intrapsychic punishment for my immature shibboleths. And, unlike many “professional” historians, I write in order to be read—not simply to be cited—and by the widest population of readers that I can reach.

William Cronon, the President of the American Historical Association, recently issued a warning to his colleagues about the moral economy of “professional boredom” accepted and promoted by the members of his tribe. In the March 2012 issue of Perspectives in History, he made the point that some of the most widely read historians had no doctoral degrees or academic appointments in the profession (individuals such as the documentarian Ken Burns and writer Barbara Tuchman were cited as examples). As remedies for the “boring” and self-referential products of professional historians he suggested “welcoming into our community anyone and everyone who shares our passion for the past and who cherishes good history,” writing in an “interesting, even intriguing” style, communicating “clearly” and “engagingly,” and “by telling good stories.”

In 2005 Steven Shapin published a similar cry of alarm in an article published in Isis entitled “Hyperprofessionalism and the Crisis of Readership in the History of Science.” The “cause” of this crisis of readership was “a pathological form of the professionalism which we so greatly value,” he wrote. Shapin’s use of a medical metaphor to get his point across about the moral economy of historians is very revealing indeed.

As both Howard Kushner and Nassir Ghaemi have abundantly demonstrated in their many publications over the years, one way to revivify historical scholarship is to infuse it with psychiatric, neurological, and psychological perspectives. There is no shortage of good stories to tell if we do this. And such medical subjects often spark an immediate, intimate connection with reader. For, after all, these are points of tangency with our everyday experience of health and illness, and they affect us all.

Dr. Ghaemi remarked that academic history is “antipsychiatrically reductionistic,” and acknowledged that one quite valid reason for this was the lack of psychiatric expertise among historians. With no formal medical, psychiatric, or clinical psychological training, and no clinical experience with patients, they naturally side-step such perspectives and choose those that are congruent with their areas of knowledge. But there is another reason for this, and it derives from the norms of the moral economy of the historical profession that distinguishes “good history” from everything else.

In a follow-up essay in the April 2012 issue of Perspectives in History, Cronon argued that there are “two fundamentally competing orientations for approaching history.” One involves “imagining that people in the past existed only to become us.” Historians regard this as the familiar sin of “presentism.” Without explicitly saying so, Cronon identifies this as “bad history.” The other, which is of course “good history,” is meeting the past on its own terms as a “foreign country” where people “do things differently there.” In other words, striving to write history within the cognitive categories of actors acting within cognitive categories of the past.

If we use Cronon’s dichotomy as a revelation of how professional historians set up jurisdictional limits for their discipline and police perceived boundary violations, we immediately see the source of their criticisms. Any application to historical evidence of 21st century psychiatric cognitive categories derived from DSM-IV—such as the bipolar disorders, the melancholic type of major depressive disorder, or schizophrenia—would be a boundary violation indicating “bad history.” From the perspective of scientific medicine, these three mental disorders are indeed the closest things to natural biological disease processes that contemporary psychiatry can offer, and hence the understandable argument that they exist “in nature” and must have existed “in nature” in the past just as tuberculosis, syphilis, and typhus did. Therefore, the argument would follow, the application of such concepts to historical evidence is legitimate and “good history.” Dr. Ghaemi especially makes such historical claims regarding the mood disorders—the true “heartland” of psychiatry—because of textual evidence dating back to Hippocrates, and wisely knows that any such claims about our era’s schizophrenia would be a historically weak argument.

Additionally, for many professional historians, even the biography as a literary form is a stylistic boundary violation of tribal norms. Adding a psychiatric or psychological interpretive framework to biographical historical evidence thus becomes a doubly dubious practice.

So, do those of us who “practice history without a license” publish “good history”? Professional historians would prefer that we employ the language of the past—madness, insanity, mania, melancholia, frenzy, dementia praecox and so on—and not attempt to deconstruct the meanings of these variable and complex concepts through the prism of DSM mental disorders. This is a rational norm and we should respect the wisdom of professional historians who hold to it and, in my opinion, strive to do the same.

But is this fair to us? After all, historians write stories about the past for the purposes of the present. Objectivity is an elusive ideal, a noble dream, and no historian is completely immune from the taint of presentism. Communicating with their readers, who live in the present, would be impossible otherwise.

Where do we draw the line? Let the negotiations continue….



Margaret Price

Editors’ Note: Dr. Price delivered her response in video form. The video and a full transcript of her response follows.

Mental disability is a term that was coined, in the way that I use it, by Cynthia Lewiecki-Wilson, who argues that using the term mental disability as opposed to mental illness indicates a number of different things that are useful in terms of understanding this sort of disability. First, that it is a disability, something that, from a disability-studies perspective, is influenced—some would even say “constructed”—through social context, rather than being something that inheres in an individual body.

I should also mention, though, that I’m pretty flexible about language, and so as I go through this response, I’ll be periodically using terms such as mental illness, labeled with mental illnesses, diagnosed. I think that these are all terms that do specific different kinds of cultural work in specific contexts. And as a rhetorician, I’m less interested in trying to find some mythical “right term,” and I’m certainly not interested in trying to mandate what terms other people use—with the exception of hate speech, I guess. Rather, I’m interested in thinking about, as Tanya Titchkosky has said, what our articulations of disability are saying in the here and now. So, what cultural work are specific terms doing, and for what reasons?

So that’s sort of a précis of why I use mental disability. And I explain that at more length at my book, which is titled Mad at School: Rhetorics of Mental Disability and Academic Life.

Now, as I read this dialogue—I first read the transcript, and I then viewed the dialogue on my computer—I was struck by a lot of different things. I think it’s a fascinating treatment of what it means to attempt to talk about psychiatric disabilities in history, and what it means to question notions like “normal.” I think that some very rich points come up in the course of this.

I also think that the dialogue as a whole tends to, tends to set up two different camps, in a sense. One camp is people who are not diagnosed mentally ill, and in the other camp are people who are diagnosed in that way. And these camps are demarcated, I believe, through the use of pronouns. I was very struck when I was first reading the dialogue, and then listening to it, by the way that the pronouns operated here.

So, for example, early in the dialogue—I’m reading from the transcript now—Dr. Kushner said, “It’s this odd thing that we can’t talk about the best examples of what it is we see on a current basis.” And Dr. Ghaemi responds, agreeing, saying, “Right. We can’t talk about our current patients.” And they go on to discuss this point. The issue that they’re discussing at that time is the need to maintain confidentiality in case histories, and they’re talking about the fact that psychiatric case histories are rarely published anymore. What we mostly see are large statistical studies, because confidentiality is all but impossible to maintain in a truly detailed case history. And that’s true; I agree with them on that point. I’m very struck by the fact that here, and pretty much throughout this dialogue, the two interlocutors are “we,” which presumably are doctors, and not mentally disabled people. And the “they” is the patients, who are mentally disabled.

So one thing I’m hoping to do in this response is to suggest that this perspective might benefit from the joining to it of the perspectives of those who do have lived experience of mental disability, such as myself. I’ve received a number of mental-illness diagnoses over the years. Most people with diagnoses have this sort of array [laughs] of different diagnoses that have come to us. And my diagnoses range from the relatively mundane (depression, anxiety) to the more unusual and, to some, sort of dramatic (such as borderline personality disorder).

And I mention this because I think it would be easy, in listening to this commentary, to assume that I too am one of the “we” who is not mentally disabled unless I specifically mark myself as a mentally disabled person—which I do do in professional contexts, but which is also a very difficult decision, obviously, and a decision that is very complicated in its effects.

Now, that issue, the one of disclosure, is one that’s of great interest to me as a rhetorician, and in fact my next book project is focused on the rhetorical event, if you will, or the rhetorical situation, of disclosure of mental disability. What does it mean to disclose such ability [shakes head]—such disability? What happens when such disclosures are made inadvertently and nonverbally? For example, if one has a panic attack in front of one’s colleagues, we could say that something has been disclosed, although not intentionally. In what ways do different audiences take up disclosures of mental disability? And what are the contexts—cultural, political, medical, scholarly—that circulate around these disclosures?

With Mark Salzer of Temple University, a psychologist, and Stephanie Kerschbaum, a rhetorician at the University of Delaware, I am working on a mixed-methods study, both a quantitative and qualitative study, that aims to gather more information about disclosures of this kind.

Now, I would suggest, to Professor Ghaemi and Professor Kushner, some of the issues they run into in their dialogue might benefit from a disability perspective, that is, the perspective of people with mental disability. For example, later in the dialogue, Dr. Ghaemi is talking about the problem of stigma, and the issue that mental illnesses are heavily, heavily stigmatized. And he argues that his work, A First-Rate Madness, posits that mental illnesses may have beneficial effects that enable one to be a better leader in times of crisis, for example—he argues that this might reduce stigma.

Now, again, as a person with lived experience, but also as a disability-studies scholar, I would encourage Dr. Ghaemi to complicate that question more. I think that holding up persons with mental illness as exemplars of leadership, as sort of super-people in times of crisis, might not have the stigma-reducing effects that he intends—that he hopes. Specifically, because to posit that a person with a disability is sort of “super,” quote-unquote, because of that disability, is in some ways only the converse of saying that that person is “sub” because of the disability. In disability studies this would be referred to as the “supercrip myth,” the notion that a person with a disability must be, or may be, wonderful in other areas specifically because of that disability, that they may have these savant-like capabilities.

So that’s a question that I would pose to Dr. Ghaemi and Dr. Kushner both.

Overall, I’m really very, very appreciative that this book was written. I’m really excited about all the different approaches to mental disability that have emerged in psychiatry and postpsychiatry, particularly in the last decade. I think that the work is becoming very interesting, very complex. And I also think that the disciplines of psychiatry, and humanities-based disciplines, and then also social science disciplines, are starting to work together in really interesting, rich ways.

But there is a trend that concerns me, which is that still, people diagnosed with mental illness, so often in these rich collaborations, seem not to be a part of it—seem still to be part of the “them” instead of the “us.” And so in composing this response, I am hoping to broaden who that might be, and to say I think everyone can have a productive part in this dialogue, and it will make the dialogue better overall.



Emily Martin

BIOPOLITICS: In Bipolar Expeditions you write of your own experience as a successful professional with bipolar disorder. How do you feel about recent literature and popular representations (such as, among others, the television show Homeland) that claim that mental illness can provide professional benefits for those in leadership positions?

EMILY MARTIN: It’s a good question. It’s one I address in [Bipolar Expeditions] in some detail. I think it’s not inaccurate to depict Carrie in Homeland as having creativity connected with being quite manic. It doesn’t seem totally misleading to depict a manic burst of energy that seems fairly consistent with what some people do experience. And I understand—not from any research, but just on the anecdotal circuit—that the writer, producer, or somebody involved in the show has a relative or somebody close to her or him who has this diagnosis, so that depiction does seem more well-rounded than many.

Most of the time, the assertions about Ted Turner, about Jim Carey, et cetera, having their success flow from their bipolar disorder strike me as a very double-edged sword, because it’s such a partial picture. It assumes that, whatever leads to such a diagnosis, you could take that condition and make it just the way you wanted it—optimize it, by means of drugs, or therapy, or just luck. You could make it perfect so you could be a fount of energy, creativity, humor, great acting, or great leadership. And, wow, who wouldn’t want that?

But that isn’t how it usually is, so it’s a double-edged sword. There’s never or rarely— Homeland is an exception—a depiction of the depressed side, the other pole of the mood spectrum, because that’s associated with inertia, lack of energy, stasis, failure, unproductivity, and all the rest—the bad things that we don’t like to think about. So, it’s very partial.

It’s also partial in that it’s a myth, one promoted actively by the pharmaceutical industry, that the medications we have are effective for everybody. Some people do well on them, and some people do very badly on them, or don’t find much help on them, or have to keep trying to change dose and combinations in an effort to wrestle their life into some kind of shape. So these depictions are more like reflections of the zeitgeist or mythologies or fantasies than they’re related to anything that’s a true, accurate portrait of living with this diagnosis.

I would also say that I asked a lot of my interlocutors who are frequenters of support groups for bipolar disorder what they thought of these media depictions. And almost universally people said, “Oh, it’s great because it’s destigmatizing.” So if Ted Turner or Robin Williams, comes out and says “I have bipolar disorder”—they don’t usually do that, but if they did— it helps us feel less like an outcast, less dehumanized, or stigmatized because the name of the condition can be said, it can be uttered. And I don’t discount that. I think that if people feel that, experience that, then that’s another thing on the plus side.

BP: There has been a recent series of historical writings attempting to apply contemporary psychiatric diagnoses to historical figures, such as Abraham Lincoln, Adolf Hitler, or John F. Kennedy. From a scholarly perspective, what do you see as the advantages and limitations of using current psychiatric categories to better understand historical figures?

EM: It’s a really common thing. It’s happening all over the place, from psychiatrists to psychologists, you come across it all the time and there are countless websites listing all the people who are said to have had bipolar disorder or manic depression.

I think that there are problems with it. There’s an incoherence to it. It’s only a coherent claim if you think it’s believable that bipolar disorder or manic-depression is simply a brain disease. If that’s what you think—you believe that there’s a reasonable case to be made that it’s only a brain disease, only a physical disease like perhaps high blood pressure or arthritis or something like that—then I guess you could look back and say that, [Abraham Lincoln’s] knuckles are kind of enlarged and he writes in his diary about feeling stiff so, he probably had arthritis. And there’s some coherence to that. It’s coherent because theoretically you could do an autopsy if we had his body and you could look and see whether the physical signs of arthritis are there. So the claim may be true or false, but at least it’s coherent.

And for any problem of the mind or problem of the psyche, like a mood disorder, or any of the other psychiatric conditions, if you think these things only are lived in particular cultural contexts and only have sense in certain historical contexts, then it becomes incoherent because—pick your person, Lincoln, Kennedy, any of the usual suspects—they lived at a time when either there was no such diagnosis or it meant something different than it does today. So, at the time Emil Kraepelin pulled together a lot of his case studies and came up with the nosology [for manic depression] that’s still very influential today, there wasn’t a strong sense of cycling. There was much more of a sense of a progressive one-way direction as the disease moved through a person’s lifetime. But, rather than cycle, he thought it involved large periods of time when the person was basically fine he or she could go home, could be in a prolonged lucid [state]. I was just in France, and there’s a historian there who’s gone into this in great detail and who’s [determined that], for Kraepelin, it was about six weeks per year that the person was hampered. So, rather than a cycle, it was more like a month and a half of difficulty per year. So if you had the diagnosis at that time, and this is what you were told, and how people understood it, it wouldn’t have the same meaning as it does today. People wouldn’t react to you the same way they do today, where it’s monitored by daily mood charts and controlled by a large pharmakon. Because of the very detailed micromanagement that people give their moods, they’re aware all the time that they are bipolar. Dip into depression or break into mania—the experience of having this condition is completely different.

One big caveat: I myself might not want to say that Lincoln had Bipolar disorder, but I would definitely say that he did not live under the description of Bipolar disorder. I have a lot of doubts about both of these moves. The disadvantages are that it is another way of valorizing certain kinds of figures, successful leaders—Teddy Roosevelt is another real favorite. What I would want to do is step back from that valorizing and ask why that particular set of traits is attracting so much interest and is given such value today. I have my own thoughts about that but I think it is a historically and culturally specific question. Asking what is happening today to make us want to see bipolarity in important people, living or dead, [is a] more productive and salient question than simply identifying people from the past to add to the bipolar pantheon.

BP: In light of the recent shooting at Sandy Hook Elementary School, mental illness has emerged at the forefront of media discussions about gun violence. If you could direct the public conversation, what would be a good starting point for a national dialogue about mental illness in America today?

EM: It’s a really great question. Like many others, I have been thinking about this a lot lately. You didn’t ask what was realistic. You gave me a blank slate, meaning I get to direct the public conversation. So I’m not saying this is realistic, but I would start by thinking of an automobile, which many people need to conduct their daily lives, to get to work, to do the shopping and so on. And it’s a piece of technology that has the potential for killing other people. It has the potential for deadly force. And, we regulate it. At first, it wasn’t regulated at all—when the Model T was invented, if you could afford it, you could drive it. But over time we learned to regulate it for the common good—a certain age limit, drinking limit, eyesight limit and so on. And we do that because, basically, it’s a public health issue, to keep highway fatalities lower. So I would use that as a model.
And forget about the Second Amendment. I really think that should be tabled. All the Second Amendment says is that we have the right to bear arms; it doesn’t say we can’t regulate who bears arms. And it doesn’t raise the question of who needs a gun. There would be cases to be made, lots of cases, where people need guns: for subsistence, for defense, and so on. But I think that the burden of proof should go on the person who wants a gun: If you want a gun, what’s the case to be made for you to have a gun? And that would shift the dynamic away from these sort of primitive rights discussions of the Second Amendment to a discussion of how we live in society, who needs a gun, and when are the risks of gun ownership outweighed by peoples’ needs.

So, in relation to mental illness, it’s very distressing to me to see the response on the part of many, many people [who say] “well, here’s how we’ll avoid another Newtown, we’ll make sure guns don’t get into the hands of mentally ill people.” Where do you even begin? Such a statement adds to the apparently sharp line between the mentally healthy and the mentally ill, a line that I think is spurious. And so it doesn’t actually contribute to public health and public safety necessarily. It allows us to ignore conditions that usually don’t end up with a diagnosis of mental illness—like alcoholism, social drinking, sociopathologies, psychopathologies. There are many people who have tendencies that would not make you want them to have a gun. They don’t usually fetch up in a psychiatrist’s office for reasons I’m sure you’re very aware of. So, people who are extremely emotionally labile, get angry easily, and on and on and on, [are on] the list of people I wouldn’t want to have a gun handy. It does not coincide with a diagnosis of mental illness. I would just want to question again whether that line, between those that live under the description of a diagnosis and those who don’t, is an appropriate one for these issues.



NASSIR GHAEMI, MD, MPH, is an academic psychiatrist specializing in mood illnesses, especially bipolar disorder. He is Professor of Psychiatry and Pharmacology at Tufts Medical Center in Boston, where he directs the Mood Disorders Program. He is also a Clinical Lecturer at Harvard Medical School, and teaches at the Cambridge Health Alliance. His clinical work and research has focused on depression and manic-depressive illness. In this work, he has published over 100 scientific articles, over 30 scientific book chapters, and he has written or edited a number of books. His most recent book is A First-Rate Madness: Uncovering the Links between Leadership and Mental Illness (Penguin, 2012).

HOWARD KUSHNER is the Robertson Professor of Science and Society at Emory University, where he holds joint appointments in the School of Public Health, Institute of Liberal Arts, and Program in Neuroscience and Behavioral Biology. He has published histories of American suicide, Tourette’s syndrome, and Kawasaski disease. His current book project is a global history of left-handedness and deviance from the early 20th century through the present.

RICHARD NOLL, Ph.D., a clinical psychologist, is Associate Professor of Psychology at DeSales University in Center Valley, PA. His most recent book, American Madness: The Rise and Fall of Dementia Praecox (Harvard University Press, 2011) was the winner of the 2012 Cheiron Book Prize and a 2012 BMA Medical Book Award – Highly Commended in Psychiatry, from the British Medical Association.

MARGARET PRICE’s research interests within rhetoric and composition include disability studies, discourse analysis, and digital composition. Her book Mad at School: Rhetorics of Mental Disability and Academic Life (University of Michigan Press, 2011) won the Outstanding Book Award from College Composition and Communication. Price’s work has appeared in venues including the Journal of Literary and Cultural Disability Studies, Profession, Disability Studies Quarterly, and Bitch: Feminist Response to Pop Culture.

EMILY MARTIN is a Professor of Anthropology at New York University. She is the author of many articles and books on medical anthropology and feminist studies of science and technology. Her most recent book is Bipolar Expeditions: Mania and Depression in American Culture (Princeton University Press, 2009) is currently at work on a new project on the history of the human subject in experimental psychiatry.



Patrick Brackin and Philip Thomas, “Postpsychiatry: A New Direction for Mental Health.” British Medical Journal 322 (2001): 724-727.

William Cronon, “Professional Boredom.” Perspectives on History (March 2012)

_______. “Loving History.” Perspectives on History (April 2012)

Michael Fellman, Citizen Sherman: A Life of William Tecumseh Sherman (Lawrence: University of Kansas Press, 1997).

John Lewis Gaddis, George F. Kennan: An American Life (New York: Penguin, 2012).

Nassir Ghaemi, A First-Rate Madness: Uncovering the Links Between Mental Illness and Leadership (New York: Penguin, 2012).

Richard Noll, American Madness: The Rise and Fall of Dementia Praecox (Harvard University Press, 2011)

Howard I. Kushner, “Medical Historians and the History of Medicine.” The Lancet 372 (2008), 710-711.

_______. A Cursing Brain: The Histories of Tourette’s Syndrome (Cambridge: Harvard University Press, 2000).

Cynthia Lewiecki-Wilson, “Rethinking Rhetoric through Mental Disabilities.” Rhetoric Review 22.2 (2003), 156-167.

Emily Martin, Bipolar Expeditions: Mania and Depression in American Culture (Princeton University Press, 2009)

Margaret Price, Mad at School: Rhetorics of Mental Disability and Academic Life (University of Michigan Press, 2011)

Steven Shapin, “Hyperprofessionalism and the Crisis of Readership in the History of Science.” Isis 96.2 (2005): 238-243.

Tanya Titchkosky, “Disability: A Rose by Any Other Name? ‘People-First’ Language in Canadian Society.” Canadian Review of Sociology and Anthropology 38.2 (2001): 125-140.



Spring 2012

University of Pennsylvania

Emory University

With annotations by Rachel Adams, Paul Lombardo, Marisa Miranda and Gustavo Vallejo, and an interview with Nikolas Rose.



The Editors

One of the most hotly debated concepts in contemporary bioethics, eugenics is often reduced to an evil of Nazism that should have been discarded long ago. In this video dialogue, two leading scholars of eugenics—Ruth Schwartz Cowan and Rosemarie Garland-Thomson—contextualize and complicate the current discussion of eugenic practices.

Beginning with a discussion of the definition of eugenics, the dialogue then examines how the history of eugenics can help us understand contemporary reproductive practice practices that are often labeled as “eugenist,” including prenatal screening and the selective abortion of fetuses with disabilities. It then examines the relationship between disability discrimination and reproductive freedom, and concludes by addressing the extent to which the association between eugenics and Nazism is useful to understanding contemporary medical practices.






Rachel Adams

Families of children with Down syndrome “suffer terribly,” Ruth Schwartz Cowan says, looking confidently into the camera. She repeats herself at least twice, adding that, as a result of Down syndrome in the family, “marriages break up, fathers disappear, siblings are ignored, siblings resent being ignored, siblings worry about who is going to take care of that individual after the parents die.” As the parent of a child with Down syndrome, I listened to these statements with incredulity. The writing of parents like Michael Berube, Martha Beck, and Jennifer Graf Gronenberg tells a very different story about the rewards of raising a child with Down syndrome. And when it comes to siblings, it would be hard to say that Dr. Brian Skotko of the Children’s Hospital in Massachusetts, Tiger Mother Amy Chua, or Olympic snowboarder Kevin Pearce were damaged by having a brother or a sister with Down syndrome. I know hundreds of more ordinary families who would probably describe themselves as experiencing degrees of suffering similar to those of the rest of the population. Very few would attribute that suffering to Down syndrome. And, as Rosemarie Garland-Thomson rightly points out, when we do experience suffering, its causes are structural. We suffer when we hear “retard” jokes in Hollywood films and coming from the White House, when teachers think our children can’t learn, or when they are excluded from the opportunities that others enjoy. These problems aren’t caused by Down syndrome, but by ignorance and social prejudice.

As someone who has devoted much of my career to the study of disability, my response to Cowan’s remarks is somewhat more nuanced. With Garland-Thomson, I object to the implication that disability comes hand-in-hand with suffering. We live in at a moment where medicine promises to eliminate pain. People with disabilities inspire fear and disgust in the able-bodied because they seem to suggest the limits to this promise. But research shows a dramatic difference between non-disabled people’s perception of the quality of life of people with disabilities and the way people with disabilities describe themselves. When asked, they claim levels satisfaction commensurate with those of the general population. My experience tells me the same is true of their families. This anecdotal evidence is supported by studies showing that the families of disabled children are no more likely to be broken or dysfunctional than the families of typical children.

Ruth Schwartz Cowan is a good historian, and she makes sure to tell us where her evidence comes from. Her sources are doctors who have worked with the families of children with Down syndrome. But any person with a disability will tell you that doctors are questionable authorities on the quality of life of their patients. For one thing, a doctor’s job is to treat pain and suffering. This means that doctors tend to see cases in which disability is linked to illness and impairment. This doesn’t make them experts on an entire population. The more self-reflective doctors I’ve talked to admit to knowing relatively little about healthy people with Down syndrome because they lack opportunities to study them (research on Down syndrome is woefully underfunded by the NIH, compared to rarer conditions like cystic fibrosis and muscular dystrophy). Ignorance is part of a bigger problem, which is that doctors have trouble accepting the healthy disabled. In my experience, it’s hard for doctors to believe that a person with a disability can thrive without need of cure, correction, or other medical intervention.

Cowan asserts that Garland-Thomson and other advocates of disability rights are barking up the wrong tree when they criticize current protocols for prenatal testing. Let me explain where she is wrong. I strongly believe in the right to reproductive freedom, as do many advocates of disability rights. I also have no objection to prenatal testing. But I object to the context in which decisions about genetic testing and selective abortion are made. I object to the way that pregnancy advice manuals, medical pamphlets, OBs, and genetic counselors (many of whom admit to never having met a person living with a genetic disability) conflate conditions like Down or Kleinfelter’s syndrome with universally fatal conditions like Trisomies 13 and 18. I object to the association of such conditions with a catalogue of every scary medical symptom that might befall a child between birth and adulthood. I object to the suggestion that genes tell us something definitive about the child a fetus will become, or what it would be like to be the parent of that child. Providing women with such biased and inaccurate information curtails their reproductive freedom and shapes their perception of living people with disabilities.

Ruth Schwartz Cowan has devoted much of her career to understanding social prejudice and inequality. Surely she can see that to equate healthy forms of disability with suffering, or to imply that that suffering can be avoided through terminating a wanted pregnancy is wrong and inaccurate.



Paul A. Lombardo

The conversation between Ruth Schwartz Cowan and Rosemarie Garland-Thomson highlights the difficulty of reaching consensus on what a term like “eugenics” means, and how it might be used accurately in contemporary discourse. Professor Cowan’s approach emphasizes locating the term in the concrete context of the first half of the 20th Century. During that era eugenics was used to describe a social and political movement that emphasized the importance of measures designed to ensure “well born” children. In the last generation, the most coercive governmental application of one variety of eugenic thinking has been linked in popular discourse with the Nazi agenda that culminated in the Holocaust. Today many people use “eugenics” interchangeably with “Nazi,” to signal coercive sterilization, exclusionary racial policies, euthanasia, and genocide. Because equating eugenics exclusively with the Nazis reduces a complex, several decades long international phenomenon only to its most horrific expression, Professor Cowan would prefer that the word be used cautiously, and certainly not applied to medical practices such as prenatal genetic diagnosis (PGD). She suggests that the legal mandates that some groups urge against using PGD implicates just the kind of reproductive coercion that characterized the worst features of eugenics.

Rosemarie Garland-Thomson prefers to use the term, particularly in its formulation as “eugenic selection,” to designate practices that are hostile to anyone who might be identified as “disabled.” (I intentionally surround the term with quotation marks to indicate that it too marks contested ground.) She focuses on cultural pressures to “select” children who conform to norms that exclude the disabled and notes that negative attitudes toward disability embedded in the Nazi brand of eugenics still surface regularly in common discourse. Though “eugenic” has become a conversation-stopping epithet used regularly by those who wish to limit all measure of reproductive interventions—from birth control, to artificial reproductive technologies, to prenatal diagnosis and abortion—Professor Garland-Thomson asserts that one who continues to use the language of eugenics to describe technologies like PGD need not also embrace changes in public policy and law that would limit reproductive choice. This conversation demonstrates the difficulty of wielding historically complex and expansive terms like eugenics to debate the most divisive topics of our time—including abortion, a subject that leads everyone’s list of controversial issues. To complicate the matter even further, as a society we have hardly reached consensus on what we mean by disability, and our cramped understanding and limited perspective leaves us struggling to identify the circumstances and conditions that should qualify for that description. Scholarship and activism by the disability rights community has shed new light on the corrosive features of our social policies and laws that touch people with disabilities, and analysis has also been focused on the language within which such policies and law are clothed. That light has just begun to penetrate the consciousness of many who face the task of crafting a morally robust social response to disability.

I agree with Professor Cowan that invoking images of the Nazi death camps by using “eugenics” as the descriptor of choice in debates about reproductive technologies is a troubling strategy. The casual and rhetorically indiscriminate repetition of “eugenics” threatens to distort that term, particularly when it is used as a catchphrase that signals only its most grotesque historical expression, the Holocaust. It also ignores the hopes for future generations of healthier babies that made eugenics popular in this and other countries. If we ignore how positive, uncontroversial ideas of health fed the aura that surrounded the term for decades, we squander the opportunity to have any insight into why the “eugenics movement” captivated so many, as well as why it took its darkest turns. We also deny how popular those ideas of health were among many physicians who spoke vigorously against sterilization, abortion and abusive treatment of people with disabilities whom they attempted to serve. Simply put, identifying everything about the history of eugenics as equivalent to German National Socialism is simply ahistorical. Perhaps most importantly, it seems to endorse the use of the term “eugenics” as it is often used today—as the demagogue’s weapon of choice in the ongoing culture wars over privacy, reproduction and the role of the state.

The worst expressions of eugenics in this country were embodied in laws that restricted marriage among people who were ill, disabled, or of different races, mandated sterilizing operations for people of suspect heredity, separated people by race, and excluded millions of others from those same disfavored groups from immigrating to this country. Those laws were the concrete expression of the sometimes patent but often unspoken bigotry against a variety of groups, including people with disabilities. It is possible that prenatal genetic diagnosis will be employed in the service of attitudes that both Rosemarie Garland-Thomson and Ruth Schwartz Cowan abhor. It is also possible that people may use PGD to carry out motives that both of them could applaud. But the changes in attitudes, policies and laws that both favor are more likely to occur if descriptions of past ills are addressed with specificity and language used with precision both to label historic abuses and to expose contemporary biases that endure.



Marisa Miranda & Gustavo Vallejo

Prior to reflecting the state of eugenics today, it is necessary to examine the history of eugenics. A historical consideration makes it possible to notice a basic distinction running through the differing varieties of eugenics highlighted by Ruth Schwartz Cowan and Rosemarie Garland-Thomson. In effect, the categories of eugenics that they identify all involve direct interventions either on bodies (sterilization, euthanasia, genocide, etc.) or on the environment (education, health, etc.). This difference regarding the object of intervention is the criterion for distinguishing between “negative eugenics” (the first group) and “positive eugenics” (the second group). However, these categories deserve to be rethought based on the experiences of Anglo-Saxon countries as well as those of the Latin world. Unlike what occurred in Anglo-Saxon nations, in cultural universes strongly influenced by the Catholic Church, eugenics could only prosper on the condition of abandoning direct interventions on bodies. As a result, eugenics became primarily concerned with controlling chance via modifications to the environment. These modifications involved the moralizing reaffirmation of customs designed to prevent “detours” in conduct that would necessarily bring about “dysgenic” descendence.

By supporting this form of intervention on the environment—and interfering with direct interventions on bodies—authoritarian governments generated a model for the military control of civil society that became implemented in Latin America through successive state coups. The form of eugenics employed in these interventions cannot be easily identified as “positive.” It was a eugenics that—with the blessing of the Catholic Church—charged itself with exterminating any form of otherness, even as it extracted all offspring capable of being “recuperated” through education in an “atmosphere supersaturated with morality” capable of modifying their “unworthy” genetic stock. For example, in Argentina, the actions of the Grandmothers of the Plaza de Mayo have made it possible, in recent years, to recover the identifies of more than a hundred children who, during the last military dictatorship (1976-1983) were the object of a systematic plan to remove the children of “subversive” mothers and give them to “well constituted” families. In Spain, analogous procedures are currently
awaiting the outcome of political decisions necessary to make judicial intervention possible.

Thus, this version of eugenics—which we could call “Latin”—though seemingly distanced from sterilization, shared a coercive root (the symbolic or physical elimination of otherness) in common with the negative eugenics of Anglo-Saxon countries. Based on this commonality, it is worth rethinking the oppositions between “negative” and “positive” or “genetic” and “environmental” eugenics in favor of an understanding of eugenic logic as being based on the exaltation of hypothetical differences between the “worthy” and “unworthy,” between those who deserve to reproduce and those who do not. At base, the point of commonality for all these actions inherent to eugenics is a will to exercise the power—which is never innocent—of identifying, classifying, hierarchizing, and finally excluding the “disagreeable.” Of these four instances, the mechanisms of exclusion are ultimately what distinguish the forms by which eugenics was carried out in Latin American and Anglo-Saxon countries.

From this perspective, if experiences not so distant in time and surrounded by a halo of “beneficial environmentalism” had the tragic consequences we have sketched out here, it is worth remembering the risks contained in the central idea of all eugenics: the preconceived idea of human inequality.

Translated by Harold Braswell



Nikolas Rose

BIOPOLITICS: What do you see right now as the promise and perils of so-called “new” eugenist technologies and practices?

NIKOLAS ROSE: Ok, well I suppose I have to go back to the question of whether or not it makes sense to call what’s going on today “eugenics” or “new eugenics” or “flexible eugenics” or “consumerized eugenics” or whatever…. I have to say that I’m quite skeptical about whether or not it is useful to redeploy the term “eugenics” in the contemporary context. There is one basic reason for that, which has to do with historical accuracy at one level, but it’s also about trying to characterize what eugenics was as it took shape from the late 19th [century] to the 1950s. Essentially the focus of eugenics was on the population – in particular the quality of the population. Eugenic politics took shape in the context of a concern with the biopolitics of population— if I can put it like that—in many Western countries and indeed in other regions as well. So eugenics was about managing the quality of the population. And within that problem of management of the population, many different strategies could be employed. The ones that usually come to mind are strategies of curtailing reproduction and of restriction and of elimination and so on. But those were by no means the only strategies that one saw.

If you just take my own current institution, London School of Economics, the first director, William Beveridge, was interested in eugenics. As was his successor Alexander Carr-Saunders, who spent several years as president of the Eugenics Society. He received the Galton prize – Galton was of course the founder of eugenics – in 1946, presented by no less a person than John Maynard Keynes, who described eugenics as “the most important, significant and, I would add, genuine branch of sociology which exists.” Note the date—this was in full knowledge of the horrors of Nazism. So these people—Beveridge, Carr-Saunders, Keynes, Richard Titmuss, who is most famous for the kind of “gift” relationship argument against the commercialization of blood donation and so on—these people weren’t eugenicists in the sense of the elimination of “bad stock” and so on and so forth. They were eugenicists in the sense that they thought it was an obligation of governments to try to improve the quality of populations by whatever means necessary. And many of those means were social and environmental.

So this is why I think that to do eugenics justice, both critically and historically, it’s necessary to kind of understand the style of thought that it was associated with and also… the problem space in which those people who called themselves eugenicists were working, as well as focusing on just the technologies. The attempt to argue that what is going on today is flexible, consumerized, neoliberal eugenics focuses on the technologies, but it ignores or forgets that more general concern with population that was actually the key to eugenics. It’s not that I think what’s going on today, with pre-implantation genetic diagnosis, or selective abortion and so forth is unproblematic, should not be criticized, etcetera. I just think that it makes more sense to try and figure out what our contemporary problem space is and then try to think about how those strategies and technologies operate today.

BP: Where would you look to analyze how these strategies operate in the contemporary context?

NR: I think it’s interesting to see where one would look for the clues… for the ways in here. And one way in is through the current discussion of the quality of life. Now this is slightly difficult to evaluate because, as I’m sure you know, some of the earliest debates in Germany at the beginning of the 20th century about termination of the lives of those people who were severely handicapped —Hoche, Binding, and so on—those all used such phrases as “lives not worth living”…. They didn’t actually use the term “quality” in German, I think, but they said that these were lives that were “not worthy of life.” So one needs to analyze the difference between that argument and the contemporary debates, which would say, well, if you’re in a family with a long history of Tay-Sachs Disease or some other severe and fatal hereditary condition, it’s best to use pre-implantation genetic diagnosis to avoid having a second or a third or a fourth child that’s going to suffer and die. And often that argument is made in terms of the fact that not only is the child going to suffer and die but also that the child-to-be will not have a good quality of life. The term “a life not worth living” or “a life not worthy of life” is not used – so is it the same to frame this in terms of a poor “quality of life”?

So I think one needs to think about the places where this notion of a quality of life appears, making the most out of one’s “quality of life.” Whether people with severe disabilities or who are going to be destined to have short lives are going to be destined to have a worthwhile quality of life — and the ways in which this links to that other key notion today the “value of life.” There are some interesting, heartbreaking legal cases where parents sue medical practitioners, or even children who have been born with severe disabilities sue their parents, for not having had pre-implantation genetic diagnosis that would have enabled the choice to terminate the pregnancy, to prevent a child having a life not worth living. In the case of kids suing their parents, that perhaps it would have been better for them not to have been born at all. Now they’re heartbreaking cases. Mainly the reason why they’re done is to use this technique to get money from insurance companies to support the lives of these children and their families. Nonetheless there there is something to investigate, it seems to me, in the emergence of these ideas of “quality of life” at an individual level and at the population level.

BP: Is there anything else you want to add?

NR: I would just say this: I absolutely understand what the people, those commentators and analysts are concerned about when they talk about “flexible eugenics” and “neoliberal eugenics,” etcetera. It’s not that I want to say that their worries are misplaced or that their concerns are misplaced. It is rather that I think that in order to understand the situation that they’re criticizing, the constant reapplication of the term “eugenics” is actually a hindrance rather than a help to understanding the problems that we face today in the twenty-first century, and the best ways in which we can analyze and therefore intervene in them.



RUTH SCHWARTZ COWAN is the Janice and Julian Bers Professor of the History and Sociology of Science at the University of Pennsylvania. She has written, lectured, and consulted about topics as diverse as the impact of washing machines on the daily lives of housewives, the impact of genetic testing on the reproductive plans of young couples, and the ironic anti-feminism of women engineers. Her latest book is Heredity and Hope: The Case for Genetic Screening (2008).

ROSEMARIE GARLAND-THOMSON is a professor of Women, Gender, and Sexuality Studies at Emory University and author of Staring: How We Look (2009) and Extraordinary Bodies: Figuring Physical Disability in American Literature and Culture (1996). Her work develops the field of disability studies in the humanities and women’s and gender studies. Her current book-in-progress concerns the logic, space, and design of euthanasia in the Holocaust and American culture.

RACHEL ADAMS is the director of the “Future of Disability Studies” at the The Center for the Critical Analysis of Social Difference at Columbia University, where she is also Professor of English and American Studies. She specializes in 19th- and 20th-century literatures of the United States and the Americas, media studies, theories of race, gender, and sexuality, medical humanities and disability studies. She is currently writing a memoir about raising a child with Down syndrome called Aiming High Enough, which will be published by Yale University Press. She is also the author of Sideshow U.S.A.: Freaks and the American Cultural Imagination (2001). Her articles have appeared in journals such as American Literature, American Literary History, American Quarterly, Minnesota Review, Camera Obscura, GLQ, Signs, Yale Journal of Criticism, and Twentieth-Century Literature. She has also published widely in the popular press, most recently with “Breaking Down Barriers—Seen and Unseen” in the Chronicle of Higher Education.

PAUL A. LOMBARDO, Ph.D., J.D., is the Bobby Lee Cook Professor of Law at Georgia State University. Professor Lombardo is currently a Senior Advisor to the Presidential Commission for the Study of Bioethical Issues, in Washington, D.C. He served on the faculty of the University of Virginia Schools of Law and Medicine from 1990 until 2006. His most recent books are Three Generations, No Imbeciles: Eugenics, the Supreme Court and Buck v. Bell (2008) and A Century of Eugenics in America: From the Indiana Experiment to the Human Genome Era (2010).

GUSTAVO VALLEJO is a Doctor of History. He is a Researcher at the National Council of Scientific and Technical Investigation (CONICET-Argentina) and Professor at the National Universities in La Plata and San Martin. In 2003, a sabbatical granted by the Spanish Ministry of Science allowed him to hold a position in the Department of History of Science of the Spanish National Research Council. He is the author of Escenarios de la cultura científica argentina. Ciudad y Universidad. 1882-1955 (2007) and Utopías Cisplatinas (2009). With Marisa Miranda, he has edited the following volumes: Darwinismo social y eugenesia en el mundo latino (2005), Políticas del cuerpo (2008), Derivas de Darwin (2010), and Una historia de la eugenesia argentina y las redes biopolíticas internacionales (in press.) He has received several awards, most recently from the National Academy of History in 2010. He is co-director (with Marisa Miranda) of the Investigation Group on the Human Sciences at the Institute of Biotechnological Research (IIB-INTECH/CONICET-UNSAM).

MARISA ADRIANA MIRANDA is a Doctor of Legal Sciences. She is a Researcher at CONICET and Professor at the National Universities in La Plata and San Martín. In 2003, she held a position in the Spanish National Research Council (CSIC) as a result of a MAE-AECI grant from the Spanish government. In 2010, she was a Visiting Professor at the University of Chile. In addition to editing, with Gustavo Vallejo, the collections mentioned above, she has also edited, with Álvaro Girón Sierra, the collection Cuerpo, biopolítica y control social (2009). She has recently published the Controlar lo incontrolable. Una historia de la sexualidad en Argentina (2011). She is co-director (with Gustavo Vallejo) of the Investigation Group on the Human Sciences at the Institute of Biotechnological Research (IIB-INTECH/CONICET-UNSAM).

NIKOLAS ROSE is James Martin White Professor of Sociology, Convenor of the Department of Sociology and Director of the BIOS Centre for the Study of Bioscience, Biomedicine, Biotechnology and Society at the London School of Economics and Political Science. He has published widely on the social and political history of the human sciences, on the genealogy of subjectivity, on the history of empirical thought in sociology, and on changing rationalities and techniques of political power, and he has also published in law and criminology. His current research concerns biological and genetic psychiatry and behavioural neuroscience, and its social, ethical, cultural and legal implications, notably how these change ways of thinking about, and governing, normality and abnormality, His publications include Governing the Soul (Second Edition, Free Association Press, 1999) and The Politics of Life Itself (Princeton University Press, 2006).



Rachel Adams, Sideshow USA: Freaks and the American Cultural Imagination (University of Chicago, 2001).

_____. “Breaking Down the Barriers: Seen and Unseen.” Chronicle of Higher Education, February 6, 2011.

Rosemarie Garland-Thomson, Staring: How We Look (Oxford University Press, 2009).

_____. “The Cultural Logic of Euthanasia: ‘Sad Fancyings in Herman Melville’s Bartelby.” American Literature 76 (December 2004): 777-806.

Ruth Hubbard, “Abortion and Disability: Who Should and Should Not Inhabit the World?” reprinted in The Disability Studies Reader, ed. Lennard Davis (Routledge, 2010).

Paul Lombardo, Three Generations, No Imbeciles: Eugenics, the Supreme Court and Buck v. Bell (Johns Hopkins University Press, 2010).

_____. A Century of Eugenics in America: From the Indiana Experiment to the Human Genome Era (Indiana University Press, 2011).

Marisa Miranda & Gustavo Vallejo, Darwinismo Social y Eugenesia En El Mundo Latino (Spanish Edition) (Siglo XXI Ediciones, 2005).

Nikolas Rose, The Politics of Life Itself: Biomedicine, Power, and Subjectivity in the Twenty-First Century (Princeton University Press, 2006).

Ruth Schwartz-Cowan, Heredity and Hope: The Case for Genetic Screening (Harvard University Press, 2008).