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The science and ethics of voluntary amputation

Earlier this month I gave a talk about a condition called Body Identity Integrity Disorder, which is characterised by the desire to amputate a healthy limb. I described the possible neurological basis of the condition, and then argued that surgical amputation should be offered to those sufferers who request it. Here’s a summary of the talk.

In January 2000, the mass media ran several stories about Robert Smith, a surgeon at the Falkirk and District Royal Infirmary who had amputated the legs of two patients at their own request and was planning a third amputation. The news stories incorrectly described the patients as suffering from Body Dysmorphic Disorder. They further stated that the director of NHS trust running the hospital at which Smith works described the amputation of healthy limbs as “inappropriate”; since then, no British hospital has performed a voluntary amputation.

The patients were, in fact, suffering from Body Integrity Identity Disorder (BIID), an apparently rare condition characterized by a burning and incessant desire to amputate an otherwise perfectly healthy limb. The first documented case of BIID dates back to a medical textbook published in 1785, by the French surgeon and anatomist Jean-Joseph Sue, who described the case of an Englishman who fell in love with a one-legged woman, and wanted to become an amputee himself so that he could win her heart. He offered a surgeon 100 guineas to amputate his leg and, when the surgeon refused, forced him to perform the operation at gunpoint.

Subsequently, the pioneering neuropsychiatrist Richard von Krafft-Ebing described three cases of what appear to be BIID in his classic 1906 book,Psycopathia Sexualis. “Even bodily defects become fetishes,” wrote von Krafft-Ebing. He describes a 28-year-old factory engineer, who “complained of a peculiar mania, which caused him to doubt his sanity.” He continues:

Since his 17th year he became sexually excited at the sight of physical defects in women, especially lameness and disfigured feet. Normal women had no attraction for him. If a woman, however, was afflicted with lameness or with contorted or disfigured feet, she exercised a powerful sensual influence over him, no matter whether she was otherwise pretty or ugly. In his dreams… the forms of halting women were ever before him. At times he could not resist the temptation to imitate their gait, which caused vehement orgasm with lustful ejaculation… He thought it would cause him intense pleasure to mate with a lame woman. At any rate, he could never marry any other than a lame woman.

This is followed by a second case:

He used to limp about the room on two brooms in lieu of crutches, or when unobserved, go limping about the streets… in his erotic dreams, the idea of the limping girl was always the controlling element. The personality of the halting girl was a matter of indifference, his interest being solely centered in the limping foot. He never had coitus with a girl thus afflicted. His perverse fancies revolved around masturbation against the foot of a halting female. At times he anchored his hope on the thought that he might succeed in winning and marrying a chaste lame girl… His present existence was on of untold misery.

Finally, Krafft-Ebing describes the case of a 30-year-old civil servant:

…since his 7th year he had for a playmate a lame girl of the same age. At the age of 12, puberty set in, and it lies beyond doubt that the first sexual emotions towards the other sex were coincident with the sight of the lame girl. For ever after only halting women excited him sexually. His fetish was a pretty lady who, like the companion of his childhood, limped with the left foot. He sought early relations with the opposite sex but was absolutely impotent with women who were not lame. Virility and gratification were most strongly elicited if the woman limped with the left foot, but he was also successful if the lameness was in the right foot. His sexual anomaly rendered him very unhappy and he was often near committing suicide.

The first modern case studies of BIID were published in the Journal of Sex Research by John Money. Money referred to the condition as apotemnophilia, meaning, literally “amputation love,” and distinguished it from acrotomophila, or a sexual attraction to amputees. The suffix “philia” denotes that BIID is a paraphilia, or what is commonly called a perversion. To this day, few psychiatrists know of the condition; and most of those that do know consider it as a fetish in which the stump of the amputated limb is fetishized because it resembles a phallus.

Most BIID sufferers, however, describe their feelings in terms in terms of identity, instead. “My left foot is not a part of me,” said one of Smith’s patients. “It feels right,” says another sufferer, “the way I should always have been and for some reason in line with what I think my body ought to have been like.” “I didn’t understand why,” says yet another, “but I knew I didn’t want my leg.”

So while there can be a sexual component to the condition, most BIID sufferers do not give sexual motives for wanting an amputation. This led Michael First, a psychiatrist at Columbia University in New York, to remane the condition. He initially considered calling it “amputee identity disorder,” but then settled with BIID.

To date, there have been approximately 300 documented cases of BIID. Most of these are male, almost all of whom desire amputation of a limb on the left side of the body. More often, it is the arm that is affected rather than the leg. All of these so-called “wannabe amputees” know exactly where they want the limb to be cut off, to the millimetre, and almost all of them remember seeing an amputee at a very young age and thinking that they should have been born like that themselves. “When I was 3yrs old, I met a young man who was completely missing all four of his fingers on his right hand,” said one 21-yr-old female BIID sufferer, “and 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.”

Most wannabes also pretend to be an amputee prior to having the limb removed, by tying the limb back, or using a wheelchair or crutches to move around the house. This behaviour could be analogous to cross-dressing in transgender individuals before they undergo sex reassignment surgery. But just as some transgender people are content cross-dressing regularly without going through hormone treatment and surgery, so too are some wannabe amputees are content pretending.

This suggests that BIID occurs with varying severity, with the mild form manifesting itself as an attraction to amputees, and more severe forms manifesting as a desire to amputate. There is overlap between the two, with some wannabes also being attracted to amputees. And if people who are attracted to amputees (or “devotees”) are also considered as suffering from BIID, then the condition may not be so rare.

BIID came into the public eye in the early 1970s, with the publication of a series of readers’ letters in Penthouse. The letters were sent in response to an intiial letter from a one-legged woman describing men who were attracted to her, and became so popular that they led to a regular column called Monopede Mania.

It’s not just limbs that are affected, however. Some BIID sufferers desire having their spinal cord severed; others feel strongly that they should have been born with multiple sclerosis or some other affliction. In Psycopathia Sexualis, Krafft-Ebing notes that the French philosopher Rene Descartes was attracted to cross-eyed women – and may, therefore, have suffered from a mild form of the condition.

BIID can be thought of as a body image disorder. The body image concept dates back about one hundred years, to the work of the neurologist Henry Head, who studied many patients with damage to the parietal lobe of the brain. Head found that these patients had profound disturbances of bodily awareness, and postulated that this region of the brain encodes what he called the body schema, a postural model of the body. Subsequently, the pioneering neuropsychiatrist Paul Schilder built on this and coined the term body image.

We now know that the brain encodes multiple neural representations of the body, some of which are static, and others dynamic. These representations manifest themselves as a mental picture of the body, its form and movements. The brain generates these representations by integrating touch, proprioceptive, and visual information, and this occurs in a region called the right superior parietal lobule.

It is currently thought that BIID occurs because the affected limb is not represented in the body image, so that sufferers have no sense of ownership over it. Early evidence for this idea comes from Vilayanur S. Ramachandran‘s lab at the University of California, San Diego. In a very simple experiment, Ramachandran and his colleagues recruited a small number of BIID sufferers seeking leg amputation, and then prodded the affected limb while recording their brain activity using a technique called magnetoencephalography.

The study showed that the touch elicited a response in the primary somatosensory cortex, where sensory information from the leg is initially processed, but not in the superior parietal lobule, where the information would normally be integrated with the other types of sensory information to generate the body image. These findings suggest that BIID occurs as a result of a discrepancy between the body image and the physical form of the body, which would create cognitive dissonance, or contradictory thoughts and feelings.

The idea of amputating healthy limbs is anathema to most surgeons, but I would argue that in some cases it might be the best possible treatment option. My rationale is simple. Psychotherapy and drugs are completely ineffective in alleviating the condition, and BIID sufferers will go to any length to be rid of the unwanted limb. Some build home-made guillotines, blast their unwanted limbs off with a shotgun, or try lie under a jacked-up car and try to crush it. One particularly popular method is to submerge the limb in dry ice for several hours, in order to damage the limb irreparably and thus force doctors to amputate. In May 1998, a 79-year-old man from New York travelled to Mexico for a black-market leg amputation, and then died of gangrene in a motel about a week later.

Offering a clean surgical amputation to those BIID sufferers who really want it would therefore minimize the harm that they might cause to themselves by taking matters into their own hands.