Limb amputation and other disability desires as a medical condition

Abstract

Some people have a profound dissatisfaction with what is considered an able-bodied state by most others. These individuals desire to be disabled, by conventional standards. In this Review, we integrate research findings about the desire for a major limb amputation or paralysis (xenomelia). Neuropsychological and neuroimaging explorations of xenomelia show functional and structural abnormalities in predominantly right hemisphere cortical circuits of higher-order bodily representation, including affective and sexual aspects of corporeal awareness. These neural underpinnings of xenomelia do not necessarily imply a neurological cause, and a full understanding of the condition requires consideration of the interface between neural and social contributions to the bodily self and the concept of disability. Irrespective of cause, disability desires are accompanied by a disabling bodily dysphoria, in many respects similar to gender dysphoria, and we suggest that they should be considered a mental disorder. SummaryThere are persons who suffer from a profound dissatisfaction with what is considered an ablebodied state by most others. They desire to be "dis-abled" by conventional standards. We integrate recent research findings on the desire for a major limb amputation or paralysis ("xenomelia"). Neuropsychological and neuroimaging explorations of xenomelia revealed functional and structural abnormalities in predominantly right hemisphere cortical circuits of higher-order bodily representation, including affective and sexual aspects of corporeal awareness. These neural underpinnings of xenomelia do not necessarily imply a neurological etiology, and a full understanding of the condition requires consideration of the interface between neural and social contributions to the bodily self and the concept of (dis)ability. Irrespective of etiology, disability desires are accompanied by a disabling bodily dysphoria, in many respects similar to gender dysphoria, and deserve to be considered a mental disorder.3 IntroductionThis review integrates recent research findings concerning a condition that is not yet recognized as a mental disorder, which is still in search of a generally accepted medical label and whose conceptual basis is still "under construction". The condition involves a person's dissatisfaction with an able-bodied state. It is referred to as "body integrity identity disorder" (BIID) in the psychiatric literature, "xenomelia" in neurologically oriented studies, and "transability" ("transableism") in approaches to disability from a primarily sociological perspective (table 1, appendix and figure 1, appendix, for the terminology). In this review we use the term "disability desires" to remain descriptive and avoid controversial concepts of identity and too narrow notions of focal brain damage. Although deafness, blindness or the status of a eunuch can be the target of disability desires, the focus of our review is on the desire for limb amputation or paraplegia. These forms of profound bodily modification are the...

Mental rotation of feet in individuals with Body Integrity Identity Disorder, lower-limb amputees, and normally-limbed controls

“…While research is scant on this subject, it has been growing in recent years [3][4][5][6][7]. The condition manifests before adolescence, usually affects males, and the desire to amputate/paralyze is usually directed towards the lower limbs [2,8]. BIID is not yet included in the most recent version of the Diagnostic and Statistical Manual of Mental Disorders (DSM-V); however, it is set to be included in the next version of the International Classification of Diseases (ICD-11) as Body Integrity Dysphoria [9] (under the category 'disorders of bodily distress and bodily experience').…”

Sex differences in perceptual hand maps: A meta-analysis

“…Within neurology, examples include phantom experiences of amputated limbs (Henderson & Smyth, 1948;Melzack, 1990;Ramachandran & Hirstein, 1998); anosognosia, in which patients deny serious motor impairments (Berti et al, 2005;Fotopoulou et al, 2008;Moro et al, 2016); somatoparaphrenia, in which patients insist that one of their limbs belongs to somebody else (Fotopoulou et al, 2011;Romano, Gandola, Bottini, & Maravita, 2014;Vallar & Ronchi, 2009), or even becomes evil (Critchley, 1974); asomatagnosia, in which patients claim that the left side of their body has vanished (Critchley, 1953); and autoscopic illusions and out-of-body experiences, in which the experienced and actual locations of the body become dissociated (Blanke, Landis, Spinelli, & Seeck, 2004;Blanke & Metzinger, 2009;Brugger, Regard, & Landis, 1997). Within psychiatry, examples include the strange body image disturbances seen in eating disorders in which emaciated patients insist that they are fat (Bruch, 1978;Gaudio & Quattrocchi, 2012;Smolek & Thompson, 2009); body dysmorphic disorder, in which patients become fixated on the idea that some part of their body is horribly ugly (Phillips, 2005;Phillips, Didie, Feusner, & Wilhelm, 2008;Veale & Bewley, 2015); and body integrity identity disorder, in which physically intact individuals wish to amputate an apparently healthy part of their body (Brugger, Lenggenhager, & Giummarra, 2013;Brugger, Christen, Jellestad, & Hänggi, 2016;First, 2005;McGeoch et al, 2011). This is an incredible list, and it is extremely difficult to identify with or imagine these conditions must be like.…”

An Investigation of Lower Limb Representations Underlying Vision, Touch, and Proprioception in Body Integrity Identity Disorder

“…One of our paralysis-variant participants was indeed female, but we had another who was biologically male but desired to be female in addition to desiring paraplegia. The parallels between Gender Dysphoria and BIID have been discussed elsewhere (14,96). Whether the desire to paralyze the legs is intertwined with the desire to modify the gender could probably only be confirmed after surgical intervention addressing one of the two conditions.…”

“…People with this variant of BIID (who will be the focus of the current report) presumably experience a mismatch between their internal mental image of the body and the external physical and functional boundaries of the body itself (4,13). The condition is not a product of any apparent brain damage, most often manifests before adolescence, is more prevalent in males than females, and is reported more often for the lower limbs than for the upper limbs [see (14)(15)(16)(17) for reviews]. While these individuals have normal sensory feedback (like vision, touch, and proprioception) from and about the affected limb (5,11), they feel overcomplete with that limb, and that it is redundant in the bodily experience.…”