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...