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 

A New Way to be Mad

Illustration by Kamil Vojnar

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?

by Carl Elliott

IN January of this year British newspapers began running articles about Robert Smith, a surgeon at Falkirk and District Royal Infirmary, in Scotland. Smith had amputated the legs of two patients at their request, and he was planning to carry out a third amputation when the trust that runs his hospital stopped him. These patients were not physically sick. Their legs did not need to be amputated for any medical reason. Nor were they incompetent, according to the psychiatrists who examined them. They simply wanted to have their legs cut off. In fact, both the men whose limbs Smith amputated have declared in public interviews how much happier they are, now that they have finally had their legs removed.
Discuss this article in the Science conference of Post & Riposte.

More on politics and society in The Atlantic Monthly and Atlantic Unbound.

From the archives:

"The Biological Basis of Morality," by Edward O. Wilson (April 1998)
Do we invent our moral absolutes in order to make society workable? Or are these enduring principles expressed to us by some transcendent or Godlike authority? The natural sciences are telling us more and more about the choices we make and our reasons for making them.

Elsewhere on the Web
Links to related material on other Web sites.

The Amputee Web Site
"A comprehensive source of information for amputees, doctors, prosthetists, teachers, phys-ed instructors, and physical therapists." Includes articles about apotemnophiles and acrotomophiles "from an amputee's perspective."

Body Dysmorphic Disorder Library
A collection of articles for laypeople about Body Dysmorphic Disorder, its diagnosis, and treatment. Posted at DrKoop.com, a health-information Web site founded by the former Surgeon General, Dr. C. Everett Koop.

"Out on a Limb," by Randy Dotinga (Salon, August 29, 2000)
"A New York psychologist searches for a hospital to allow his healthy right leg to be cut off after a Scottish facility refuses."

Healthy people seeking amputations are nowhere near as rare as one might think. In May of 1998 a seventy-nine-year-old man from New York traveled to Mexico and paid $10,000 for a black-market leg amputation; he died of gangrene in a motel. In October of 1999 a mentally competent man in Milwaukee severed his arm with a homemade guillotine, and then threatened to sever it again if surgeons reattached it. That same month a legal investigator for the California state bar, after being refused a hospital amputation, tied off her legs with tourniquets and began to pack them in ice, hoping that gangrene would set in, necessitating an amputation. She passed out and ultimately gave up. Now she says she will probably have to lie under a train, or shoot her legs off with a shotgun.

For the first time that I am aware of, we are seeing clusters of people seeking voluntary amputations of healthy limbs and performing amputations on themselves. The cases I have identified are merely those that have made the newspapers. On the Internet there are enough people interested in becoming amputees to support a minor industry. One discussion listserv has 1,400 subscribers.

"It was the most satisfying operation I have ever performed," Smith told a news conference in February. "I have no doubt that what I was doing was the correct thing for those patients." Although it took him eighteen months to work up the courage to do the first amputation, Smith eventually decided that there was no humane alternative. Psychotherapy "doesn't make a scrap of difference in these people," the psychiatrist Russell Reid, of Hillingdon Hospital, in London, said in a BBC documentary on the subject, called Complete Obsession, that was broadcast in Britain last winter. "You can talk till the cows come home; it doesn't make any difference. They're still going to want their amputation, and I know that for a fact." Both Smith and Reid pointed out that these people may do themselves unintended harm or even kill themselves trying to amputate their own limbs. As the retired psychiatrist Richard Fox observed in the BBC program, "Let's face it, this is a potentially fatal condition."

Yet the psychiatrists and the surgeon were all baffled by the desire for amputation. Why would anyone want an arm or a leg cut off? Where does this sort of desire come from? Smith has said that the request initially struck him as "absolutely, utterly weird." "It seemed very strange," Reid told the BBC interviewer. "To be honest, I couldn't quite understand it."

The True Self?

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.

From the archives:

"Listening to St. John's Wort" by Edison Miyawaki (May 1998)
Medical science meets the "natural Prozac."

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?

"I Knew I Didn't Want My Leg"

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.

Illustration by Kamil VojnarMany 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 René 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."


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

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; Volume 286, No. 6; page 72-84.