Understanding transableism: Why do some people want to be physically disabled?

The science behind transableism

Writer: John Cordey
Editor: Haoyue Guo


For the majority of people, the idea of losing a limb or being paralysed is a thing of nightmares. But for individuals suffering from a rare condition called Body Integrity Identity Disorder, this is actually their deepest and most intrinsic desire.

Body integrity identity disorder (or BIID for short) is described as a ‘phenomenon in which an individual desires the amputation of one or more healthy limbs, or who desires to be paralysed’.

This peculiar case of transableism was first reported in the mid-18th century. An unknown English man reportedly held a French surgeon up at gunpoint and forced him against his will to amputate the Englishman’s otherwise perfectly healthy and functioning leg. The surgeon later received a large amount of money from the Englishman, along with a letter in which the Englishman thanked the surgeon for “removing a limb which put an invincible obstacle to [his] happiness”. Since then, multiple cases of this peculiar disability have been reported across the world.

So what causes this unique condition? Due to the rarity of this disability, and the stigma that surrounds trans-ableism, this phenomenon was not extensively studied until very recently. Regardless, there are multiple conflicting theories as to the cause of this disability, but this article will focus on the psychological and neurological aspects. In the 1970s, BIID was initially defined as a form of paraphilia. In other words, scientists believed that BIID was a condition characterized by abnormal sexual desires’ towards disabilities. This theory was somewhat supported by the psychiatrist Michael First in 2004, who reported that 87% of a sample of 52 people with BIID felt a sexual attraction to amputees. However, this theory does not actually explain the cause of the condition, rather it just shows its comorbidities.

In 2011, there was a breakthrough in the understanding of this condition by the neuroscientist McGeoch. He devised an experiment involving four individuals suffering from BIID. Each desired the loss of one or both of their legs. The researchers tapped the individuals’ affected leg, the unaffected leg, and the thigh above the ‘line of the desired amputation’. They found that compared to the control group, all four patients had significantly reduced activity in their right superior parietal lobe as a result of tapping the affected leg. Moreover, there was no significant reduction in brain activity due to tapping above the line of the desired amputation.

The results of this experiment supported the hypothesis that BIID may be a direct result of damage to the right superior parietal lobe. This would explain the symptoms, as this brain area is involved in the subconscious awareness of our body configuration, and enables us to incorporate the position and movement of limbs into the subconscious view of our body. But this study used a very small sample size, and is the first of its kind. Therefore, it cannot conclusively prove that BIID is a direct result of damage to the right superior parietal lobe. Regardless, this is a very interesting research development and could potentially be the first step to a greater understanding of BIID and similar conditions.

The bioethics surrounding BIID are embroiled in controversy. In the late 1990s, a Scottish doctor named Robert Smith performed amputations on two individuals suffering from BIID (Dyer, 2000). These surgeries were met with a huge backlash as these individuals were not seen as being able to make rational decisions due to their neurological lesion. Their decision to remove their limbs were thought to be based on obsessive and psychotic desires for self-mutilation. Furthermore, these surgeries were also believed to oppose the principle of nonmaleficence (or in English, ‘do no harm’) since amputations bear other risks besides disability such as infections and necrosis.

As a result, the hospital trust banned surgeries of this nature from taking place in the UK. The head of the trust committee commented. “I don’t believe it’s appropriate for this type of operation to go ahead without consideration being given to the potential implications for the local reputation of the hospital and the concerns that might arise among the local population.” Dr. Smith faced huge criticism from members of the public as well as the medical society as a result of these operations. Despite this, he maintained that ‘‘surgery was the only redress’’ for individuals suffering from BIID, and therefore he felt that he had made the right decision to undertake these surgeries.

Although at present the removal of healthy limbs is banned, the question remains: should individuals suffering from BIID be able to legally undergo these surgeries? Individuals with this condition frequently resort to ‘DIY’ amputations or self-mutilation in an attempt to fulfil their transableist needs. Some individuals have resorted to putting the offending limb in front of oncoming traffic, or packing the body part with dry ice to attempt to remove it. Furthermore, the traditional treatment for psychiatric disorders such as antidepressants and behavioural therapy have been shown to have little effect on the individuals’ compulsions.

People suffering from BIID, and other forms of transableism face a huge amount of underserved criticism regarding their disorder. It is clear that there must be increased public awareness of this debilitating condition in order to reduce the stigma surrounding it. Furthermore, the medical community must re-evaluate the way they treat patients suffering from BIID. Amputations seem to be the only effective treatment for these individuals. Denying these sufferers the one treatment which may cure their dysmorphia will only result in prolonging their discomfort and move many to pursue very drastic measures in order to relieve their suffering.

References

Hilti, L. M., & Brugger, P. (2010). Incarnation and animation: physical versus representational deficits of body integrity. Experimental Brain Research, 204(3), 315-326.

Berger, B. D., Lehrmann, J. A., Larson, G., Alverno, L., & Tsao, C. I. (2005). Nonpsychotic, nonparaphilic self-amputation and the internet. Comprehensive Psychiatry, 46(5), 380-383.

Müller, S. (2009). Body integrity identity disorder (BIID)—is the amputation of healthy limbs ethically justified?. The American Journal of Bioethics, 9(1), 36-43.

Dyer, C. (2000). Surgeon amputated healthy legs. BMJ: British Medical Journal, 320(7231), 332.

BBC news, 31st January 2000, Surgeon defends amputations retrieved from: http://news.bbc.co.uk/1/hi/scotland/625680.stm

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