m_topn picture
Atlantic Monthly Sidebar

Go to this issue's Table of Contents.

D E C E M B E R  2 0 0 0 

(The online version of this article appears in three parts. Click here to go to part one or part two.)

So, at any rate, suggests the philosopher and historian of science Ian Hacking, who in a series of strikingly innovative books and articles has attempted to explain just how "transient mental illnesses" such as the fugue state and multiple-personality disorder arise. A transient mental illness is by no means an imaginary mental illness, though in what ways it is real (or "real," as the social constructionists would have it) is a matter for philosophical debate. A transient mental illness is a mental illness that is limited to a certain time and place. It finds an ecological niche, as Hacking puts it -- an idea that helps to explain how it thrives. In the same way that the idea of an ecological niche helps to explain why the polar bear is adapted to the Arctic ecosystem, or the chigger to the South Carolina woods, Hacking's ecological niches help to explain the conditions that made it possible for multiple-personality disorder to flourish in late-twentieth-century America and the fugue state to flourish in nineteenth-century Bordeaux. If the niche disappears, the mental illness disappears along with it.

Illustration by Kamil VojnarHacking does not intend to rule out other kinds of causal mechanisms, such as traumatic events in childhood and neurobiological processes. His point is that a single causal mechanism isn't sufficient to explain psychiatric disorders, especially those contained within the boundaries of particular cultural contexts or historical periods. Even schizophrenia, which looks very much like a brain disease, has changed its form, outlines, and presentation from one culture or historical period to the next. The concept of a niche is a way to make sense of these changes. Hacking asks, What makes it possible, in a particular time and place, for this to be a way to be mad?

From the archives:

"Phony Science Wars," by Richard Rorty (November 1999)
A review of Ian Hacking's The Social Construction of What?

Hacking's books Rewriting the Soul (1995) and Mad Travelers (1998) are about "dissociative" disorders, or what used to be called hysteria. He has argued, I think very persuasively, that psychiatrists and other clinicians helped to create the epidemics of fugue in nineteenth-century Europe and multiple-personality disorder in late-twentieth-century America simply by the way they viewed the disorders -- by the kinds of questions they asked patients, the treatments they used, the diagnostic categories available to them at the time, and the way these patients fit within those categories. He points out, for example, that the multiple-personality-disorder epidemic rode on the shoulders of a perceived epidemic of child abuse, which began to emerge in the 1960s and which was thought to be part of the cause of multiple-personality disorder. Multiple personalities were a result of childhood trauma; child abuse is a form of trauma; it seemed to make sense that if there were an epidemic of child abuse, we would see more and more multiples.

Crucial to the way this worked is what Hacking calls the "looping effect," by which he means how a classification affects the thing being classified. Unlike objects, people are conscious of the way they are classified, and they alter their behavior and self-conceptions in response to their classification. Look at the concept of "genius," Hacking says, and the way it affected the behavior of people in the Romantic period who thought of themselves as geniuses. Look also at the way in which their behavior in turn affected the concept of genius. This is a looping effect. In the 1970s, he argues, therapists started asking patients they thought might be multiples if they had been abused as children, and patients in therapy began remembering episodes of abuse (some of which may not have actually occurred). These memories reinforced the diagnosis of multiple-personality disorder, and once they were categorized as multiples, some patients began behaving as multiples are expected to behave. Not intentionally, of course, but the category "multiple-personality disorder" gave them a new way to be mad.

Contagious Desire

I AM simplifying a very complex and subtle argument, but the basic idea should be clear. By regarding a phenomenon as a psychiatric diagnosis -- treating it, reifying it in psychiatric diagnostic manuals, developing instruments to measure it, inventing scales to rate its severity, establishing ways to reimburse the costs of its treatment, encouraging pharmaceutical companies to search for effective drugs, directing patients to support groups, writing about possible causes in journals -- psychiatrists may be unwittingly colluding with broader cultural forces to contribute to the spread of a mental disorder.

Suppose doctors started amputating the limbs of apotemnophiles. Would that contribute to the spread of the desire? Could we be faced with an epidemic of people wanting their limbs cut off? Most people would say, Clearly not. Most people do not want their limbs cut off. It is a horrible thought. The fact that others are getting their limbs cut off is no more likely to make these people want to lose their own than state executions are to make people want to be executed. And if by some strange chance more people did ask to have their limbs amputated, that would be simply because more people with the desire were encouraged to "come out" rather than suffer in silence.

I'm not so sure. Clinicians and patients alike often suggest that apotemnophilia is like gender-identity disorder, and that amputation is like sex-reassignment surgery. Let us suppose they are right. Fifty years ago the suggestion that tens of thousands of people would someday want their genitals surgically altered so that they could change their sex would have been ludicrous. But it has happened. The question is why. One answer would have it that this is an ancient condition, that there have always been people who fall outside the traditional sex classifications, but that only during the past forty years or so have we developed the surgical and endocrinological tools to fix the problem.

But it is possible to imagine another story: that our cultural and historical conditions have not just revealed transsexuals but created them. That is, once "transsexual" and "gender-identity disorder" and "sex-reassignment surgery" became common linguistic currency, more people began conceptualizing and interpreting their experience in these terms. They began to make sense of their lives in a way that hadn't been available to them before, and to some degree they actually became the kinds of people described by these terms.

I don't want to take a stand on whether either of these accounts is right. It may be that neither is. It may be that there are elements of truth in both. But let us suppose that there is some truth to the idea that sex-reassignment surgery and diagnoses of gender-identity disorder have helped to create the growing number of cases we are seeing. Would this mean that there is no biological basis for gender-identity disorder? No. Would it mean that the term is a sham? Again, no. Would it mean that these people are faking their dissatisfaction with their sex? No. What it would mean is that certain social and structural conditions -- diagnostic categories, medical clinics, reimbursement schedules, a common language to describe the experience, and, recently, a large body of academic work and transgender activism -- have made this way of interpreting an experience not only possible but more likely.

Whether apotemnophilia (or, for that matter, gender-identity disorder) might be subject to the same kind of molding and shaping that Hacking describes is not clear. One therapist I spoke with, an amputee wannabe, believes that the desire for amputation, like multiple-personality disorder, is often related to childhood trauma. This is only one person's hypothesis, of course, and it may be wrong. But it is clear that sexual desire is malleable. It doesn't seem far-fetched to imagine that amputated limbs could come to be more widely seen as erotic, or that given the right set of social conditions, the desire for amputation could spread. For a thousand years Chinese mothers broke the bones in their daughters' feet and wrapped them in bandages, making the feet grow twisted and disfigured. To a modern Western eye, these feet look grotesquely deformed. But for centuries Chinese men found them erotic.

Ian Hacking uses the term "semantic contagion" to describe the way in which publicly identifying and describing a condition creates the means by which that condition spreads. He says it is always possible for people to reinterpret their past in light of a new conceptual category. And it is also possible for them to contemplate actions that they may not have contemplated before. When I was living in New Zealand, ten years ago, I had a conversation with Paul Mullen, who was then the chair of psychological medicine at the University of Otago, and who had told me that he was a member of a government committee whose job it was to decide whether pornographic materials should be allowed into the country. I bristled at the idea of censorship, and asked him how he could justify being a part of something like that. He just laughed and said that if I could see what his committee was banning, I would change my mind. His position was that some sexual acts would never even occur to a person in an entire lifetime of thinking about sex if not for seeing them pictured in these books. He went on to describe to me various alarming acts that, it was true, had never occurred to me. Mullen was of the opinion that people were better off never having conceptualized such acts, and in retrospect, I think he may have been right.

This is part of what Hacking is getting at, I think, when he talks about semantic contagion. The idea of having one's legs amputated might never even enter the minds of some people until it is suggested to them. Yet once it is suggested, and not just suggested but paired with imagery that a person's past may have primed him or her to appreciate, that act becomes possible. Give the wish for it a name and a treatment, link it to a set of related disorders, give it a medical explanation rooted in childhood memory, and you are on the way to setting up just the kind of conceptual category that makes it a treatable psychiatric disorder. An act has been redescribed to make it thinkable in a way it was not thinkable before. Elective amputation was once self-mutilation; now it is a treatment for a mental disorder. Toss this mixture into the vast fan of the Internet and it will be dispersed at speeds unimagined even a decade ago.

Michael First, the editor of the Diagnostic and Statistical Manual, is quite aware of this worry. When I asked him how the DSM task force decides what to include in the manual, he told me there were three criteria. One, a diagnosis must have "clinical relevance" -- enough people must be suffering from the condition to warrant its inclusion. Thus more data must be gathered on apotemnophilia before a decision is made to include it in the next edition. Two, a new diagnostic category must not be covered by existing categories. This may turn out to be the catch for apotemnophilia, because if the data suggest that it is a paraphilia, it will be subsumed into that category. "People have paraphilias for all kinds of things," First says, "but we do not have separate categories for all of them."

From the archives:

"Homosexuality and Biology," by Chandler Burr (March 1993)
An introduction to a muddled and sometimes contentious world of scientific research -- one whose findings, now as tentative as they are suggestive, may someday shed light on the sexual orientation of everyone.

Three, a new diagnostic category must be a legitimate "mental disorder." What counts as a disorder is hard to define and, in fact, varies from one age and society to the next. (Consider, for example, that homosexuality was defined as a mental disorder in the DSM until the 1970s.) One way DSM-IV marks off disorders from ordinary human variation is by saying that a condition is not a disorder unless it causes a person some sort of distress or disability.

However, the fuzziness around the borders of most mental disorders, along with the absence of certainty about their pathophysiological mechanisms, makes them notoriously likely to expand. A look at the history of psychiatry over the past forty years reveals startlingly rapid growth rates for a wide array of disorders -- clinical depression, social phobia, obsessive-compulsive disorder, panic disorder, attention-deficit hyperactivity disorder, and body dysmorphic disorder, to mention only a few. In trying to pinpoint the causes for this expansion one could, depending on ideological bent, point to the marketing efforts of the pharmaceutical industry (more mental disorder equals more profits), the greater diagnostic skills of today's psychiatrists, a growing population of mentally disordered Americans, or a cultural tendency to look to psychiatry for explanations of what used to be called weakness, sin, unhappiness, perversity, crime, or deviance. But the fact is that none of these disorders could have expanded as they have unless they looked a lot like ordinary human variation at their edges. Mild social phobia looks a lot like extreme shyness, attention-deficit disorder can look a lot like garden-variety distractibility, and a lot of obsessive-compulsive behavior, as Peter Kramer told me, "verges on the normal." The lines between mental dysfunction and ordinary life are not as sharp as some psychiatrists like to pretend.

Which makes me wonder how sharply the lines around apotemnophilia can be drawn. The borders between pretenders, wannabes, and devotees do not look very solid. Many wannabes are also devotees or pretenders. A study published in 1983, which surveyed 195 customers of an agency selling pictures and stories about amputees, found that more than half had pretended to be amputees and more than 70 percent had fantasized about being amputees. Nor do the lines look very clear between "true" apotemnophiles (say, those for whom the desire is a fixed, long-term part of their identities) and those whose desire has other roots, such as an interest in extreme body modification. We also need to remember that even if a core group of people with true apotemnophilia could be identified, their diagnosis could come only from what they report to their psychiatrists. There is no objective test for apotemnophilia. People seeking amputation for other reasons -- sexual gratification, for example, or a desire for extreme body modification -- could easily learn what they need to say to doctors in order to get the surgery they want. Specialists working in gender-identity clinics were complaining of something similar with their patients as early as the mid-1970s. Intelligent, highly motivated patients were learning the symptoms of gender dysphoria and repeating them to clinicians in order to become candidates for sex-reassignment surgery.

The Elusiveness of "Help"

I WILL confess that my opinions about amputation as a treatment have shifted since I began writing this piece. My initial thoughts were not unlike those of a magazine editor I approached about writing it, who replied, "Thanks. This is definitely the most revolting query I've seen for quite some time." Yet there is a simple, relentless logic to these people's requests for amputation. "I am suffering," they tell me. "I have nowhere else to turn." They realize that life as an amputee will not be easy. They understand the problems they will have with mobility, with work, with their social lives; they realize they will have to make countless adjustments just to get through the day. They are willing to pay their own way. Their bodies belong to them, they tell me. The choice should be theirs. What is worse: to live without a leg or to live with an obsession that controls your life? For at least some of them, the choice is clear -- which is why they are talking about chain saws and shotguns and railroad tracks.

And to be honest, haven't surgeons made the human body fair game? You can pay a surgeon to suck fat from your thighs, lengthen your penis, augment your breasts, redesign your labia, even (if you are a performance artist) implant silicone horns in your forehead or split your tongue like a lizard's. Why not amputate a limb? At least Robert Smith's motivation was to relieve his patients' suffering.

It is exactly this history, however, that makes me worry about a surgical "cure" for apotemnophilia. Psychiatry and surgery have had an extraordinary and very often destructive collaboration over the past seventy-five years or so: clitoridectomy for excessive masturbation, cosmetic surgery as a treatment for an "inferiority complex," intersex surgery for infants born with ambiguous genitalia, and -- most notorious -- the frontal lobotomy. It is a collaboration with few unequivocal successes. Yet surgery continues to avoid the kind of ethical and regulatory oversight that has become routine for most areas of medicine. If the proposed cure for apotemnophilia were a new drug, it would have to go through a rigorous process of regulatory oversight. Investigators would be required to design controlled clinical trials, develop strict eligibility criteria, recruit subjects, get the trials approved by the Institutional Review Board, collect vast amounts of data showing that the drug was safe and effective, and then submit their findings to the U.S. Food and Drug Administration. But this kind of oversight is not required for new, unorthodox surgical procedures. (Nor, for that matter, is it required for new psychotherapies.) New surgical procedures are treated not like experimental procedures but like "innovative therapies," for which ethical oversight is much less uniform.

The fact is that nobody really understands apotemnophilia. Nobody understands the pathophysiology; nobody knows whether there is an alternative to surgery; and nobody has any reliable data on how well surgery might work. Many people seeking amputations are desperate and vulnerable to exploitation. "I am in a constant state of inner rage," one wannabe wrote to me. "I am willing to take that risk of death to achieve the needed amputation. My life inside is just too hard to continue as is." These people need help, but when the therapy in question is irreversible and disabling, it is not at all clear what that help should be. Many wannabes are convinced that amputation is the only possible solution to their problems, yet they have never seen a psychiatrist or a psychologist, have never tried medication, have never read a scientific paper about their problems. More than a few of them have never even spoken face to face with another human being about their desires. All they have is the Internet, and their own troubled lives, and the place where those two things intersect. "I used to pretend as a child that my body was 'normal' which, to me, meant short, rounded thighs," one wannabe wrote to me in an e-mail. "As a Psychology major, I have analyzed and reanalyzed, and re-reanalyzed just why I want this. I have no clear idea."

(The online version of this article appears in three parts. Click here to go to part one or part two.)

Carl Elliott teaches at the Center for Bioethics at the University of Minnesota. He is the author of A Philosophical Disease (1998) and a co-editor of The Last Physician: Walker Percy and the Moral Life of Medicine (1999).

Illustrations by Kamil Vojnar.

Copyright © 2000 by The Atlantic Monthly Company. All rights reserved.
The Atlantic Monthly; December 2000; A New Way to Be Mad - 00.12 (Part Three); Volume 286, No. 6; page 72-84.