A New Way to Be Mad

The phenomenon is not as rare as one might think: healthy people deliberately setting out to rid themselves of one or more of their limbs, with or without a surgeon's help. Why do pathologies sometimes arise as if from nowhere? Can the mere description of a condition make it contagious?
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."

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.

Presented by

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).

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