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?
"I Knew I Didn't Want My Leg"

Illustration by Kamil Vojnar

The question to be answered is not only why people who want to be amputees use the language of identity to describe what they feel but also what exactly they are using it to describe. One point of contention among clinicians is whether apotemnophilia is, as John Money thought, really a paraphilia. "I think that John Money confused the apotemnophiles and the acrotomophiles," Robert Smith wrote to me from Scotland. "The devotees I think are paraphilic, but not the apotemnophiles." The point here is whether we should view apotemnophilia as a problem of sexual desire—a variety of the same condition that includes pedophilia, voyeurism, and exhibitionism. Smith, in agreement with many of the wannabes I have spoken with, believes that apotemnophilia is closer to gender-identity disorder, the diagnosis given to people who wish to live as the opposite sex. Like these people, who are uncomfortable with their identities and want to change sex, apotemnophiles are uncomfortable with their identities and want to be amputees.

But just what counts as apotemnophilia is part of the problem in explaining it. Some wannabes are also devotees. Others who identify themselves as wannabes are drawn to extreme body modification. There seems to be some overlap between people who want finger and toe amputations and those who seek piercing, scarring, branding, genital mutilation, and such. Some wannabes, Robert Smith suggests, want amputation as a way to gain sympathy from others. And finally, there are "true" apotemnophiles, whose desire for amputation is less about sex than about identity. "My left foot was not part of me," says one amputee, who had wished for amputation since the age of eight. "I didn't understand why, but I knew I didn't want my leg." A woman in her early forties wrote to me, "I will never feel truly whole with legs." Her view of herself has always been as a double amputee, with stumps of five or six inches.

Many devotees and wannabes describe what Lee Nattress, an adjunct professor of social work at Loma Linda University, in California, calls a "life-changing" experience with an amputee as a child. "When I was three years old, I met a young man who was completely missing all four of his fingers on his right hand," writes a twenty-one-year-old woman who says she is planning to have both her arms amputated. "Ever since that time, I have been fascinated by all amputees, especially women amputees who were missing parts of their arms and wore hook prostheses." Hers is not an unusual story. Most wannabes trace their desire to become amputees back to before the age of six or seven, and some will say that they cannot remember a time when they didn't have the desire. Nattress, who surveyed fifty people with acrotomophilia (he prefers the term "amelotasis") for a 1996 doctoral dissertation, says that much the same is true for devotees. Three quarters of the devotees he surveyed were aware of their attraction by the age of fifteen, and about a quarter wanted to become amputees themselves.

Many of the news reports about the case at the Falkirk and District Royal Infirmary identified Smith's patients as having extreme cases of body dysmorphic disorder. Like people with anorexia nervosa, who believe themselves to be overweight even as they become emaciated, people with body dysmorphic disorder are preoccupied with what they see as a physical defect: thinning hair, nose shape, facial asymmetry, the size of their breasts or buttocks. They are often anxious and obsessive, constantly checking themselves in mirrors and shop windows, or trying to disguise or hide the defect. They are often convinced that others find them ugly. Sometimes they seek out cosmetic surgery, but frequently they are unhappy with the results and ask for more surgery. Sometimes they redirect their obsession to another part of the body. But none of this really describes most of the people who are looking for amputations—who, typically, are not convinced they are ugly, do not imagine that other people see them as defective, and are usually focused exclusively on amputation (rather than on, say, a receding hairline or bad skin). Amputee wannabes more often see their limbs as normal, but as a kind of surplus. Their desires frequently come with chillingly precise specifications: for instance, an above-the-knee amputation of the right leg.

By calling apotemnophilia a paraphilia, John Money placed it in a long and distinguished lineage of psychosexual disorders. The grand old man of psychosexual pathology, Richard von Krafft-Ebing, catalogued an astonishing range of paraphilias in his Psychopathia Sexualis (1886), from necrophilia and bestiality to fetishes for aprons, handkerchiefs, and kid gloves. Some of his cases involve an attraction to what he called "bodily defects." One was a twenty-eight-year-old engineer who had been excited by the sight of women's disfigured feet since the age of seventeen. Another had pretended to be lame since early childhood, limping around on two brooms instead of crutches. The philosopher Renè Descartes, Krafft-Ebing noted, was partial to cross-eyed women.

Yet the term "sexual fetish" could be a misleading way to describe the fantasies of wannabes and devotees, if what is on the Web is any indication (and, of course, it might well not be). Many of these fantasies seem almost presexual. I don't want to be misunderstood: there is plenty of amputee pornography on the Internet. Penthouse has published in its letters section many of what it terms "monopede mania" letters, purportedly from devotees, and Hustler has published an article on amputee fetishism. But many other amputee Web sites have an air of thoroughly wholesome middle-American hero worship, and perhaps for precisely that reason they are especially disconcerting, like a funeral parlor in a shopping mall. Some show disabled men and women attempting nearly impossible feats—running marathons, climbing mountains, creating art with prostheses. It is as if the fantasy of being an amputee is inseparable from the idea of achievement—or, as one of my correspondents put it, from an "attraction to amputees as role models." "I've summed it up this way," John Money said, a little cruelly, in a 1975 interview. "Look, Ma, no hands, no feet, and I still can do it." One woman, then a forty-two-year-old student and housewife whose history Money presented in a 1990 research paper, said one of the appeals of being an amputee was "coping heroically." A man told Money that his fantasy was that of "compensating or overcompensating, achieving, going out and doing things that one would say is unexpectable." One of my amputee correspondents wrote that what attracted him to being an amputee was not heroic achievement so much as "finding new ways of doing old tasks, finding new challenges in working things out and perhaps a bit of being able to do things that are not always expected of amputees."

I am on the phone with Max Price, a graphic designer in Santa Fe, who has offered to talk to me about apotemnophilia. (He has asked me to change his name and the details of his life and history if I write about him, and I have.) Price is a charming man, articulate and well-read, and despite my initial uneasiness about calling him, I am enjoying our conversation. I had corresponded by e-mail with a number of wannabes, but had not managed to talk to any of them until now. The conversation has taken on an easy intellectual tone, more like a discussion between colleagues than an interview. Price is telling me about his efforts to get doctors to adopt some guidelines for deciding when a person with apotemnophilia should have surgery. I am tossing out ideas, trying out some of my thoughts, and I wonder aloud about a relationship between apotemnophilia and obsessive-compulsive disorder. I ask Price whether he feels that his desire is more like an obsession, a fantasy, or a wish. He says, "Well, it was definitely like an obsession. Until I cut my leg off, of course."

That brings me up short. I had been unaware that he had actually gone ahead with an amputation. "Ah," I say. I pause. Should I ask? I decide I should. "May I ask how you did it?" Price laughs. "It was kind of messy," he says. "I did it with a log splitter." He then explains, in a thoughtful, dispassionate manner, the details of his "accident" ten years ago—the research he had done on anesthesia and wound control, how he had driven himself to the emergency room after partially amputating his limb, the efforts of the hospital surgeons to reattach it. He lived with the reattached leg for six months, he said, until medical complications finally helped him persuade another surgeon to amputate it.

I met Price through an Internet discussion listserv called "amputee-by-choice," one of the larger lists. At first I had simply prowled through the archives and listened to the ongoing conversation. I found many of the archived messages very creepy. Here were people exchanging photographs of hands with missing fingers; speculating about black-market amputations in Russia; debating the merits of industrial accidents, gunshot wounds, self-inflicted gangrene, chain-saw slips, dry ice, and cigar cutters as means of getting rid of their limbs and digits. When I introduced myself to the active electronic group, however, the discussion abruptly stopped, like the conversation in a village pub when a stranger walks in. For several days only a handful of new messages were posted. But I had invited wannabes to get in touch with me individually, telling them that I was a university professor working on apotemnophilia, and over the next few days a dozen or so people responded. Some, like Price, were insightful and articulate. Some had become mental-health professionals, in part as a way of trying to understand their desires. The few who had managed an amputation seemed (somewhat to my surprise) to have made peace with their desires. But others obviously needed help: they were obsessive, driven, consumed. Many seemed to have other psychiatric problems: clinical depression, obsessive-compulsive disorder, eating disorders, transvestism of a type that sounded anything but playful or transgressive. They did not trust psychiatrists. They did not want medication. They wanted to know if I could find them a surgeon. I felt like an ethnographer in a remote country, unfamiliar with the local customs, who the natives believe can help them. I began to understand how Robert Smith must have felt. I also began to wonder at the strength of a desire that would take people to such lengths.

By all accounts, the Internet has been revolutionary for wannabes. I can see why. It took me months to track down even a handful of scientific articles on the desire for amputation. It took about ten seconds to find dozens of Web sites devoted to the topic. Every one of the wannabes and devotees I have talked with about the Internet says that it has changed everything for them. "My palms were actually sweating the first time I typed 'amputee' into a search engine," one wannabe wrote to me. But the results were gratifying. "It was an epiphany," she wrote. When Krafft-Ebing was writing Psychopathia Sexualis, people with unusual desires could live their entire lives without knowing that there was anyone else in the world like them. Today all it takes is a computer terminal. On the Internet you can find a community to which you can listen or reveal yourself, and instant validation for your condition, whatever it may be. This same wannabe told me that she has never spoken about her desire for amputation with a friend, a family member, or a mental-health professional, and that she never will. Yet she is a frequent anonymous participant on the wannabe discussion listserv.

"The Internet was, for me, a validation experience," writes a wannabe who is also a transsexual. She says she found herself thinking less about amputation after logging on, because her desire was no longer such a dark secret. "When one is afraid of discovery, I think one thinks rather more about the secret in order to guard against accidental revelation." She also points out that the Internet helped her get information on how to lose her legs. Another wannabe, a therapist, says that discovering the Internet was a mixed blessing. "There was a huge hole to be filled," she told me, and the Internet began to fill it. To discover that she was not alone was wonderful—but it also meant that a desire she had managed to push to the back of her mind now shoved its way to the front again. It occupied her conscious thoughts in a way that was uncomfortable. She says she knows wannabes who subscribe to as many as a dozen wannabe and devotee online mailing lists and spend hours every day wading through electronic messages.

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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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