The Neurobiology and Ethics of Voluntary Amputation – Mo Costandi

Being a member of an audience of a much higher age group has always interested me when attending talks and debates. These are a group of people who are not afraid to speak out of line, admit when they don’t understand a topic and express their anger when other attendees don’t follow the rules. This makes me think about the behaviour one keeps while attending a talk. As a college student used to lectures, I sit a couple of rows away from the speaker out of the line of sight (a reaction to the avoidance of pop quizzes, I believe).

In the Conway Hall, first opened in 1929 and owned by the South Place Ethical Society, members flooded the front of the lecture hall as the rather enthusiastic curator, Norman Bacrac ushered Mo Costandi to the podium.

Mo Costandi, a molecular and developmental neurobiologist come science writer and blogger for The Guardian, gave his talk on ‘The Neurobiology and Ethics of Voluntary Amputation’ detailing the neurological origins and ethical issues arising from Body Integrity Identity Disorder (BIID). You know it’s a tongue twister when even the speaker can’t say it right.

Costandi began by explaining body awareness. When you close your eyes, how do you know where your feet are? Your hands? Proprioception is the internal sense that tells you where your body parts are without you having to look at them.  This internal body awareness relies on receptors in your joints, muscles, ligaments and connective tissue. They pick up information as muscles bend and stretch as well as when your body is still. Body awareness is dependent on being able to perceive and integrate information coming from all the sense organs.

Like people whose gender identity differs from their assigned sex at birth, this condition is when a person’s idea of how they should look does not match their actual physical form. It’s called Body Integrity Identity Disorder (BIID) and leads to people seeking amputation of their otherwise healthy limb. Also called Apotemnophilia (latin for amputation loving), the brain sees the offending limb as being foreign and not actually a part of the person, thus the desire to have it removed.

Costandi made reference to a case study in Scotland, where Robert Smith (a surgeon, NOT the lead singer of The Cure) had amputated two legs from two healthy patients at their own requests. This report was over shadowed at the time with news of an English doctor, Harold Shipman, who had a recorded history of 218 murders being positively ascribed to him.

The two patients of Dr. Smith claimed that they had very little success from their treatments by psychiatrists and psychologists over the years. In an interview with Dr. Smith, he claimed “The one concern is that many of these individuals will in fact injure themselves. There are quite a lot of anecdotal reports, largely from the States, of people taking the law into their own hands, lying on a railway line or shooting their legs off with a shotgun.” One of the men who had a healthy limb amputated at a Scottish hospital has revealed that he felt like “a complete person” post-amputation. Kevin Wright had his lower left leg removed by surgeon Robert Smith at Falkirk and District Royal Infirmary in September, 1997. The operation brought to an end, 30 years of desperation for Mr Wright, during which he admitted contemplation of suicide, such was the unhappiness caused by his leg.

The Forth Valley Acute Hospitals NHS Trust’s chairman, Ian Mullen put a ban on such surgery as it would damage the reputation of the hospital.

Costandi stated that this disorder had been first recorded in medical text dating back to 1785 by a French Surgeon, John-Joseph Sue.

Richard von Krafft-Ebing’s principal work is Psychopathia Sexualis: eine Klinisch-Forensische Studie (Sexual Psychopathy: A Clinical-Forensic Study), which was first published in 1886, popularized the words sadism and masochism. He made the first claims that bodily defects can become fetishes. To discourage lay readers, Krafft-Ebing had deliberately chosen a scientific term for the title of the book and had written parts of it in Latin for the same purpose… just in case people got any ideas.

A lot of cases around this time gave details of men who were sexually attracted to lame women. Psychiatrists claimed that male amputees felt their stump represented the falis, however, Costandi reminds us that that’s a load of bullshit.

With many sufferers claiming little sexual motive, the name Apotemnophilia was changed to Body Integrity Identity Disorder in 2005. Today, there are over 300 documented cases, most of which are male and seek amputation on the left side of the body. More research needs to be conducted to understand these preferences. Each potential amputee is very specific about where they want to the limb to be amputated and have felt this obsessively burning desire to remove their limb from a very early age, ‘’even from the age of three’’.

Magnetoencephalography experiments support the hypothesis that BIID arises from congenital dysfunction of the right superior parietal lobule (where the brain processes touch). In 2011, Paul McGeoch et al. published the results of an experiment in which they were able to obtain MEG images of the parietal lobes for four research subjects, three of whom desired amputation. McGeoch and his co-researchers concluded that the images suggest that “inadequate activation of the right superior parietal lobe (SPL) leads to the unnatural situation in which the sufferers can feel the limb in question being touched without it actually incorporating into their body image, with a resulting desire for amputation.” So even though they felt the touch sensation, they still didn’t believe that limb belonged to them.”

Costandi concluded his talk by bringing in Phantom Limb Syndrome, a sensation, often painful, making the sufferer believe their amputated or missing limb is still attached to their body and is moving appropriately with other body parts. He claimed that 90% of amputees suffer from this condition, however, only 50% of amputees with BIID experience phantom limb syndrome. This further proves Costandi’s point of BIID being a neurological disorder.

Does Mo Costandi believe that sufferers of BIID should be granted amputation?

His answer is yes. One way or another, sufferers of BIID will find a way of removing their limb, whether it’s through constructing a DIY guillotine to submersing their limb in dry ice. The better option would be to get it done in a clean, sterile environment with a professional. Successful amputees have felt a better standard of living after surgery and unlike sufferers of Body Dismorphic Disorder (BDD) where they are constantly trying to change their body image, one amputation is usually enough.

When questions went to the floor, a surgeon claimed that he would never cut a limb from a healthy patient, a person also claimed to be suffering from a psychological disorder of tooth ache, causing him to remove teeth. Another statement from the floor claimed that if these people were allowed amputate their healthy limbs they would become a strain on the state, seeking disability benefit.

An incredibly interesting topic… I’m looking forward to the book!

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One response to “The Neurobiology and Ethics of Voluntary Amputation – Mo Costandi

  1. Thanks for the nice summary, Tara. Was that you sitting near the front to my left, who had a question about gender identity that someone else asked before you did?

    A couple of minor points about your post:

    The name of the French surgeon was Jean-Joseph Sue. His book was published in 1785, not 1875, but it wasn’t him who performed the amputation at gunpoint. This information comes from Carl Elliott’s book, Better Than Well: American Medicine Meets the American Dream.

    Dry ice is liquid carbon dioxide, not liquid nitrogen.

    I didn’t know that the inferior parietal lobule is smaller in men than in women, but I’m not sure that this explains why BIID seems to affect males more than females. (There have been so few documented cases so far, that it may turn out to affect both sexes equally; we just don’t know.) The body image is encoded in the right *superior* parietal lobule, and this may be related to the fact that it’s almost always a limb on the left side of the body that’s affected, but that’s still not clear.

    Psychopathia sexualis can be downloaded here, and it’s a fascinating read.

    Finally, I think it’s quite an exaggeration to say that “members flooded” to the lecture hall. And my surname is Costandi – you’re not the first person person to spell it as Constandi, and you almost certainly won’t be the last!

    Thanks again for attending my talk and summarizing it here. I’m glad you found it interesting.

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