Our body is at the core of our sense of self and our personal identity. However, the neural mechanisms underlying the conscious experience of our own body remain poorly understood. Partial or total anesthesia of the body does not lead to the disappearance of the bodily experience, but to a continued experience of the body’s previous shape and posture, even if the experienced situation does not match the actual situation. This demonstrates that the conscious experience of the body is based on a brain representation of the body shape, the “body image”, rather than depending on immediate sensory stimuli 1. The notion of body image is dramatically demonstrated by the phantom limb phenomenon, in which amputees report vivid experiences of the continued existence of an absent limb. Although the physical limb is gone, it is still present in the core body image, leading to a continued subjective experience of the now absent limb.
Body integrity dysphoria (BID) is a disorder characterized by the desire to have a sensory or physical disability or the discomfort of being a non-disabled person. It is something that usually begins in early adolescence and has detrimental consequences for the affected person. The person with BID insists that an apparently healthy body part does not belong to him or her, and that he or she would feel more complete without it. In many cases, these individuals wish to have the disowned body part surgically amputated, which, in their opinion, would make them feel more complete.
Apotemnophilia is a disorder belonging to the paraphilias, sexual preferences and behaviors that go beyond the limits of the social mainstream to the point of being commonly considered as perversions. Apotemnophiles persistently fantasize about experiencing sex as amputees, and think they would experience sensations they do not have as healthy individuals. Some people include apotemnophilia within BID and some believe that they are different diagnoses because apotemnophiles do not consider that they have a defect in a limb or finger and therefore desire amputation, they are people who wish to have some part of their body removed to conform to the way they see themselves.
In January 2000, a bitter controversy erupted in the United Kingdom when it was made public that a Scottish surgeon named Robert Smith had amputated the limbs of two able-bodied people who had apparently suffered a head injury and were diagnosed with BID 2. Both had requested and consented to the surgery, stated that they had desperately wanted to be amputated for years and that, despite considerable effort, they had been unable to reconcile themselves psychologically with the bodies they had been born with. Both operations were unremarkable and both patients, who had undergone psychological and psychiatric evaluation prior to the operations, reported no regrets afterward. However, other studies have found that, in many cases, surgery does not close the story and many amputees complain about their appearance and request further operations.
This issue brings to mind people who do not feel comfortable with their own bodies, whose mental image of themselves does not match what they see in the mirror, and a society that sometimes tries to protect people from themselves with unequal principles and outcomes. The news of the operation brought public opinion face to face with some of the contradictions we live with. As a result of the wave of public outrage, the hospital where the operations had been performed, Falkirk and District Royal Infirmary, banned any similar surgery in the future. Dennis Canavan, a Scottish MP for the district where the hospital is located, declared that the operation was “obscene” and stated that “the whole thing is disgusting and legislation needs to be passed now to ban it”. The MP’s reaction is understandable, as the desire to be dismembered is based on paradoxes: wholeness is experienced as incompleteness and one’s own is experienced as alien…, but the politician’s response suggests the need to understand what is at stake for the people concerned and society at large. Although many of us see it as mutilation, apotemnophiles paradoxically see themselves with an amputated limb as more capable, more functional, more whole, more complete 3.
Apotemnophilia is a rare disorder, but its effects can be devastating for those who suffer from it. A well-known example is the case of Philip Bondy, an apotemnophile who died of gangrene in a San Diego motel room days after a clandestine amputation in Tijuana. When I worked in San Diego I sometimes went to Tijuana, the two cities are 30 km apart, but they are worlds apart, and what most caught my attention was the profusion of locals with the terse announcement of “Girls, girls”; pharmacies, where I met Americans who traveled thousands of miles to buy medicines in Mexico because they were much cheaper than in their country and “Surgery rooms”, operating rooms, where people who were terminally ill in the U.S. reportedly went to be operated on in a terminal state. Most often they died on the operating table or shortly thereafter, but surely they had paid in advance. A significant percentage arrived at the Tijuana airport in private planes, either for medical needs or economic possibilities. Bondy is illustrative also of the grim determination of the apotemnophiles to get the amputations they desire and the grave harm to which this determination makes them potentially vulnerable.
Whether one thinks elective amputation should be banned as an unacceptable mutilation, as the Scottish MP suggests, or permitted (though not necessarily accepted) as a medically legitimate surgical treatment of a psychiatric condition depends very much on how one views the body (e.g., how one defines terms like “harm” and “bodily integrity”) and how one delimits a person’s boundaries for disposing of his or her body. Can you remove part of your breast for an aesthetic reason? And for fear of getting breast cancer? And can you remove a useful finger for a psychological reason?
The cause of DIC is unclear. However, Saetta and his group 4 analyzed a sample of sixteen people with left leg-related BID who voluntarily underwent MRI and found decreased gray matter density in the superior parietal lobe of the right cerebral hemisphere and in the ventral premotor cortex of the left hemisphere. Thus, this disorder is linked to altered functional connectivity in a distributed neural network that underlies the body image of ourselves. Moreover, the loss of gray matter density was correlated with both their self-reported desire for amputation and the degree to which they pretended to be amputees by using crutches or a wheelchair. In a sense, the body image of one’s own body did not match the brain image of that body and people, who failed to “fix” that distorted mental image, thought of surgery as a way to make peace with their own body.
Oliver Sacks cites several cases of patients, some dating back to the 19th century, who felt that some of their limbs were alien and were found to have lesions or tumors in the parts of the brain that control the consciousness or gnosis of the limbs in question. Apotemnophiles and the physicians who treat them are faced with the dilemma of choosing whether the goal of treatment should be body modification (to make it conform to the apotemnophile’s body image) or body image modification (to make it conform to that of the actual body). A century and a half ago, William James pointed out that although it is natural to speak of the body as belonging to us, our body is not ours, it is us (1). While the desire to amputate a limb may seem to most of us to be a very strange thing, the BID study offers a revealing window into how all of our brains generate our conscious experience of corporeality.
- Longo M (2020) Body Image: Neural basis of ‘negative’ phantom limbs. Current Biol 30 (11): 2191–2195. ↩
- Dyer C (2000) Surgeon Amputated Healthy Legs. Br Med J 320: 332 ↩
- Bridy A (2004) Confounding extremities: Surgery at the medico-ethical limits of Self-Modification. J Law Med Ethics 32: 148-158. ↩
- Saetta G, Hänggi J, Gandola M, Zapparoli L, Salvato G, Berlingeri M, Sberna M, Paulesu E, Bottini G, Brugger P (2020) Neural Correlates of Body Integrity Dysphoria. Curr Biol 30(11): 2191-2195. doi: 10.1016/j.cub.2020.04.001 ↩