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?
The True Self

Illustration by Kamil Vojnar

In 1977 the Johns Hopkins psychologist John Money published the first modern case history of what he termed "apotemnophilia"—an attraction to the idea of being an amputee. He distinguished apotemnophilia from "acrotomophilia"—a sexual attraction to amputees. The suffix -philia is important here. It places these conditions in the group of psychosexual disorders called paraphilias, often referred to outside medicine as perversions. Fetishes are a fairly common sort of paraphilia. In the same way that some people are turned on by, say, shoes or animals, others are turned on by amputees. Not by blood or mutilation—pain is not usually what they are looking for. The apotemnophile's desire is to be an amputee, whereas the acrotomophile's desire is turned toward those who happen to be amputees.

I found John Money's papers on amputee attraction at the University of Otago, in Dunedin, New Zealand, shortly after the Falkirk story made the news. Money is an expatriate New Zealander, and he has deposited his collected manuscripts in the Otago medical library. I had come to Dunedin to write a book at the university's Bioethics Centre, where I'd worked in the early 1990s. I have a medical degree, teach university courses in philosophy, and write a fair bit about the philosophy of psychiatry, and I was interested in the way that previously little-known psychiatric disorders spread, sometimes even reaching epidemic proportions, for reasons that nobody seems fully to understand. But I had never heard of apotemnophilia or acrotomophilia before the Falkirk story broke. I wondered: Was this a legitimate psychiatric disorder? Was there any chance that it might spread? Like Josephine Johnston, a lawyer in Dunedin who is writing a graduate thesis on the legality of these amputations (and who first brought the Falkirk case to my attention), I also wondered about the ethical and legal status of surgery as a solution. Should amputation be treated like cosmetic surgery, or like invasive psychiatric treatment, or like a risky research procedure?

Reviewing the medical literature, one might conclude that apotemnophilia and acrotomophilia are extremely rare. Fewer than half a dozen articles have been published on apotemnophilia, most of them in arcane journals. Most psychiatrists and psychologists I have spoken with—even those who specialize in paraphilias—have never heard of apotemnophilia. On the Internet, however, it is an entirely different story. Acrotomophiles are known on the Web as "devotees," and apotemnophiles are known as "wannabes." "Pretenders" are people who are not disabled but use crutches, wheelchairs, or braces, often in public, in order to feel disabled. Various Web sites sell photographs and videos of amputees; display stories and memoirs; recommend books and movies; and provide chat rooms, meeting points, and electronic bulletin boards. Much of this material caters to devotees, who seem to be far greater in number than wannabes. It is unclear just how many people out there actually want to become amputees, but there exist numerous wannabe and devotee listservs and Web sites.

Like Robert Smith, I have been struck by the way wannabes use the language of identity and selfhood in describing their desire to lose a limb. "I have always felt I should be an amputee." "I felt, this is who I was." "It is a desire to see myself, be myself, as I 'know' or 'feel' myself to be." This kind of language has persuaded many clinicians that apotemnophilia has been misnamed—that it is not a problem of sexual desire, as the -philia suggests, but a problem of body image. What true apotemnophiles share, Smith said in the BBC documentary, is the feeling "that their body is incomplete with their normal complement of four limbs." Smith has elsewhere speculated that apotemnophilia is not a psychiatric disorder but a neuropsychological one, with biological roots. Perhaps it has less to do with desire than with being stuck in the wrong body.

Yet what exactly does it mean to be stuck in the wrong body? For the past several years I have been working with a research group interested in problems surrounding the use of medical interventions for personal enhancement. One of the issues we have struggled with is how to understand people who use the language of self and identity to explain why they want these interventions: a man who says he is "not himself" unless he is on Prozac; a woman who gets breast-reduction surgery because she is "not the large-breasted type"; a bodybuilder who says he took anabolic steroids because he wants to look on the outside the way he feels on the inside; and—perhaps most common—transsexuals whose experience is described as "being trapped in the wrong body." The image is striking, and more than a little odd. In each case the true self is the one produced by medical science.

At first I was inclined to think of this language as a literal description. Maybe some people really did feel as if they had found their true selves on Prozac. Maybe they really did feel incomplete without cosmetic surgery. Later on, however, I came to think of the descriptions less as literal than as expressions of an ambivalent moral ideal—a struggle between the impulse toward self-improvement and the impulse to be true to oneself. Not that I can see no difference between a middle-aged man rubbing Rogaine on his head every morning and a man whose discomfort in his own body is so all-consuming that he begins to think of suicide. But we shouldn't be surprised when any of these people, healthy or sick, use phrases like "becoming myself" and "I was incomplete" and "the way I really am" to describe what they feel, because the language of identity and selfhood surrounds us. It is built into our morality, our literature, our political philosophy, our therapeutic sensibility, even our popular culture. This is the way we talk now. This is the way we think. This is even the way we sell cars and tennis shoes. We talk of self-discovery, self-realization, self-expression, self-actualization, self-invention, self-knowledge, self-betrayal, and self-absorption. It should be no great revelation that the vocabulary of the self feels like a natural way to describe our longings, our obsessions, and our psychopathologies.

This leads to larger questions about the nature of identity. What prompts people to conceptualize themselves as amputees? And at a time when identity seems so malleable, when so many people profess uncertainty about who they really are, is it possible that the desire for this particular identity might spread?

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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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